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Niki, I have felt exactly the way you felt on many occasions. Especially when I would watch TV. All of a sudden I would feel breathless and anxiety would slam me. Then I would feel hyper and almost manic. I swear I thought I was going nuts. It doesn't happen anymore. As soon as I hit the 6 month mark of this dreaded virus, I started to turn a corner to healing. I now have so few "moments". Gloria, have you had a chance to google cervical vertigo? It really sounds like you may have something in your neck, like a disc that could be pressing on nerves, causing some of your symptoms. Like the headaches and the stiffness and soreness in your neck and shoulders. Really push for an MRI and then push for physical therapy. It changed my life. Good luck to all! Have a nice weekend. Keep the faith. This too shall pass!! Melissa |
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I need some reasurance that this is going to get better.... how is everyone feeling? I feel like crap right now! these past few days have been horrible, im way more off balance and i feel like im floating away. When did these symptoms get better for you guys? when i walk i feel like everything moves up and down. when i stand i feel like the floor is sinking. when im in bed i feel like im floating. i thought it was getting better but these past 3 days have been worse. Everyone plz tell me if you had or have these symptoms and in what month did it get more tolerable. Im in month 3.5 and am scared to death! |
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Claudia, I PROMISE you that you will start to feel better, BUT you need to do something about it. I found that within a month of vestibular rehab therapy, I had 2 days normal. Then the second month of vestibular rehab therapy I had 6 days symptom free. I am on my 6th month of this dreaded virus. I now am in VRT once a week and my symptoms, if any, are always minor and I can live right through them. YES, I felt exactly as you did. When I would sit, I felt like I was on a rocking boat. When I would stand I felt like I was falling backwards. When I walked it felt like the ground was moving under me. All very scary stuff. You will get better, but you do need to start tricking your brain to compensate. Look into vestibular rehab therapy. Keep your chin up and really believe you will get better. Melissa |
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Claudia - everyone is different and i think everyone feels slightly different with the symptoms they get with labs. I totally sympathise with you, I have moments of hope where I think I am improving then it gets worse. It is such a long process, you have to start looking at the overall picture and now I am at 7.5 months and although I am not right, I have seen overall improvement with many many set backs along the way. This illness is so different because you don't keep improving, there are times when you get worse and honestly I have literally been so scared sometimes I have just cried out in despair. I have lain in bed wishing I was dead and at times I have seriously thought about ending it all. All you can do is just keep surviving through each day and keep putting one foot in front of the other. Just keep strong and remember that if you do have labs, then everyone on all these forums who has had it sees improvement, many recover fully and those that dont reach a point of acceptance and learn to live with the symptoms they have which are a lot milder. 3.5 months is not that long in the course of labs, I know it seems a long time compared to other illnesses but if you look on sites like wikipedia it says that dizziness and disequilibrium can last for months or years after labs. What things can you do? do you work at all? go for walks or socialise? Test yourself and see what you can and cant manage. Social situations and busy places are a nightmare for me although I am coping with other things a lot better. I do often feel very off balance sitting upright on a chair and I hate that. Have you had any vestibular testing? if not why not ask your ENT for that. I am sure you will see improvement. Take care xx |
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Thanks for the responses everyone. It's super comforting because I always associated anxiety with feeling "down" so those "upper" anxiety moments were unexpected and even MORE scary. And we know that fear only makes those moments 10x worse, and make them last longer. I think about that you all have posted when I'm in those moments, and remind myself that it's fine, people get through it, and that I'm alright! Thank you! |
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Hi Jemma, I am so proud of you!!! Your post to Claudia is spot on and everything you are saying is so true. Don't like the bit where you mention ending it all but can fully sympathise with that - that scares me to think that you did think like that. But, when you first arrived on this site you yourself were a wreck and look at you now - you are giving sound advise to others and know loads about your condition. At first you were asking the same questions over and over and I could tell by your posts that you were so scared of what was happening and here you are now saying that overall things are getting better for you and you are looking at things more positively - good on you! X Factor - Joe walked it again I'm afraid, can't wait for tonight to see who's being kicked out - got a feeling it might be Olly but will be sad to see anyone go. Gloria - how are things going for you? Sandie xx |
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Hi, The past 4 weeks I haven't had any dizziness or brain fog! There is one symptom that hasn't gone away, and that is the middle/inner ear full/puffiness feeling. Several weeks ago it went from mild to this throbbing, aching feeling.It feels like it is around the eustachian tube. Have any of your doctors given any clues as to what causes inner ear irritation? Is it indeed a virus, bacteria or maybe fungus?. It just seems like 12+ weeks is a long time to have a virus infection. Overall I would say I am 90-95% operational. Stay strong! Andy |
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Sandie - thanks for your post. Yes you are right in the last month or so I have been trying to be more positive. In July/August I thought I might be improving and then in September and October things went worse and I got all these middle ear symptoms which made my dizziness worse and I felt like I was going backwards. Coupled with not getting a diagnosis from the doctors it really scared me and I still am scared about the future but if I can believe this is labs and not something else and that I will improve with time and not get worse then i can deal with it. I still want the doctors to confirm this is an inner ear problem. From my own research and symptoms and coming on here I cannot see what else it can be, believe me I have spent 7.5 months racking my brains to work it out. I can only think it is labs and if that is the case then I dont have a choice but to come to terms with it and hope it improves. I honestly did think about ending it but I did not have the guts. I never want to sink that low again but this thing has taught me that you never know what life will throw at you. Gloria - how did your weekend party go? I want Joe to win on x factor now too, think he will. Not sure about strictly but i am starting to think chris and olla might do it! Jemma x |
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Im finally seeing the light at the end of the tunnel, I had my first 2 days being virtually symptom free in 12 months, I even went out to my works christmas party and had one to many and although I was hungover my balance felt good. I know Im still not 100% in the clear but it feels so good to finally realize that I will be normal again, all I can say is keep moving, do as much as you can as often as you can, this is what has got me through this mess.. DC |
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Hi everyone, Again - have just written tons & touched the mouse & it has all disappeared!!! So, start again. Thanks Jemma/Sandie for asking after my week-end. I managed it - enjoyed it but yesterday & today feel horrendous! Saturday, our neighbours asked us in for a drink & mince pie for Christmas. After and hour and half, we had to leave to get ready for the party. This was all OK. Despite the odd feelings in my head, I think I did OK - especially at the noisy restaurant. So today feel as if I have gone back a few weeks again & feel horrendous, but it has to be worth it - no alcohol though. Just couldn't face it. Great DC you enjoyed your Christmas party & have seen a bit of light after so long. Melissa - great to put a face to a name - lovely photo. I did google cervical vertigo. I had an MRI done on my neck back in August & the consultant did not think there was anything there to cause dizziness. There is a bit of wear & tear, but nothing sinnister. It was my physio the other week who said that my C2 had a bit of movement in it. So when I go back to the neurologist next week, I'll ask his opinion. It really is chicken & egg stuff. My neck has got stiff, I think as a result of doing the VRT - so what do you do?! Jemma - can so empathise with you and about you have felt at times. It really gets you down this thing. For me, this week marks 6 months exactly with labs!! Should I celebrate?!!!! You are right though - even though I feel rough - I couldn't do what I have done over the last couple of weeks at the beginning of all this. So, it must be some sort of progress I suppose. Sandie - think you are right about Joe. He has to win X factor. I am glad Olly got through even though I admit his singing over the last couple of weeks have not been so hot. Strictly, Jemma - I agree - think Chris & Ola could do well. Anyway, tomorrow I have to go and do some more Christmas shopping, but my heart is not really in it. I have asked Santa for a new head!!!!! Lovely to read all your posts. Love & hugs, Gloria xx |
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Gloria, Thank you for the compliment. I too just passed my 6 month mark with this BS. Had a rough weekend. I haven't felt that dizzy in some time. It was that "time" of the month though. It also snowed here and was very wet. I think the barometric pressure is brutal for Labs. My orthopedist said the same thing about my neck not causing me any symptoms of dizziness. I for one can tell you that since the physical therapist started working on my neck I have actually had normal days and many in a row. Go figure... Push for physical therapy. Try it, it may just work! Melissa |
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Hi folks, I'm in for balance testing tomorrow. Will be getting the ENG, caloric test, tympanogram and a normal hearing test done. For those who have had it done before, is there anything I should look out for or ask? Thanks. Gary. |
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Has anyone out there gotten a cold and had all their symptoms come back? I am fighting a cold. Sneezing, runny nose. Then all of a sudden all the dizzy off balance and generally ill feelings came back. Just wondering if anyone has had this experience too? Thanks Melissa |
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Hi all Gloria - hope its not another £650 for your neurology apt! Glad you enjoyed your weekend meal and got through it. I find it really hard sitting and talking to people as I feel so off balance, do you feel the same? I try to avoid it which means I dont interact with people like i want to. DC - glad you have had some symptom free days. Have you had any balance tests and been diagnosed with labs? Gary - I dont think there is any advice for the tests really, just go along and dont worry they arent too bad and you should get the results straight away. Are you going private? Melissa - luckily I havent had a cold yet since getting this but I do believe from reading other peoples posts and that Labs website that a cold can make the dizziness worse for some people so hopefully it will improve for you when the cold goes. I am exhausted today and was ysterday too. I think that trying to work through this is really tiring me out. I need a few weeks(years!) off! Is anyone else working or planning to return to work in the new year. I am still doing 6 hours a day and just cant face increasing that at the moment. Keep posting everyone x |
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Hi Jemma, Thanks for that, yes going private, €350 and no waiting around. It's either that or give a useless ENT €300 and wait 4-6 weeks so it's a no brainer really. Melissa, Jemma is right, colds and illness make the symptoms worse but you should go back to how you were before the cold when it clears up. Gloria, Sandie, how are you keeping? Gary. |
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Jemma, I never had any balance tests done, 2 different doctors both diagnosed me with Labyrinthitis, I was advised from the start that it would take some time to get to 100% again, but gradually I have made improvements to the point where I feel Im nearly there.. |
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Hi, I was looking up ear throbbing on Google and came across this forum http://www.healthboards.com/boards/archive/index.php/t-106402.html. The posters are discussing TMJ and how it affects them. Seems TMJ sufferers can have symptoms that are very similar to LABS/VN. Just something else to consider. The swelling/puffy/full feeling in my ears has went into overdrive the past couple days. So more internet searching before I see another doctor. Best of health, Andy |
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Hi all, Gary - good to hear from you. You must let us know how you got on with your tests. Have you been fairly stable recently or any major setbacks. Also, how did your evening out go. When I was sitting in the noisy restaurant last Saturday, I did think of you & want to know how you faired. Went to my physio (normal not vestibular) yesterday. She says my C2 vertebrae is much more stable after doing some exercises & my neck & shoulders much improved - which they are thank goodness. I did ask her if she felt my neck was the problem & she said no, although tight muscles don't help. I feel a bit more relieved knowing that these are more secondary issues than the real cause. She also said that the movement in the C2 was minimal anyway. Why she didn't say that at first I'll never know! Andy - my ears are still popping & cracking 6 months down the line & after the ENT consultant said the pressure had equalised. Mine also, like yours is better some days than others. I went down the TMJ route. Went to see my dentist who felt my jaw etc. but said I didn't have TMJ. However, he gave me a soft rubber denture thing to wear at night on my lower teeth to help with some minor grinding that I did have. I must admit not to having worn it recently, but wore it for a few weeks. Helped with the grinding but not any of the other labs symptoms, but worth trying. Poor Melissa - hope you feel a bit better today. I really hope I don't get a cold. Not sure how I would cope with another thing! Having gone into town a couple of times through necessity to do some Christmas shopping - how do you avoid these things. If I hear someone cough or sneeze I do walk away from that area quickly. How mad?!!! Jemma - did you get your Christmas tree last week-end? Like you, I am not symptom free yet. The mornings when I get up are the worst for me. Typing this I am so swimmy headed. I seem to feel a bit better in the early evening for a couple of hours then just before I go to bed I feel woozy again. Whether watching the tv stabilizes you a bit, I don't know. Whilst I felt rotten after the week-end for a couple of days, I am thinking the brain needs to get used to all these types of situations again. You are right, trying to turn my head and converse with people is so difficult. I made sure, at the restaurant I sat between my hubby and my cousin who understand if I sit back and am quiet. So with gritted teeth (not so gritted to cause more teeth grinding!!!) onwards & upwards. Today is my husband Andy's actual birthday. We are going over to his mum's for dinner with his sister & family. Won't be as noisy as the week-end though!! Keep fighting this thing & Melissa your mantra - this too will pass! hugs, Gloria xx |
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Hi Melissa It is normal for your symptoms to return every time you catch a cold/flu, virus etc. However, I did have a cold one time and didn't get any symptoms at all! I suffer from post nasal drip and have allergies and of course everything is connected to the ears so that is why I think I am not getting a full recovery from this condition. Jemma, please keep interacting with people even if you feel c***. This is what happened with me and I started to avoid everyone and it's amazing how many people just don't bother with you after a while. I think they take it personally! I still have a lots of good friends and family but I have lost a good few as well. Gary, I'm ok, a lot better than I was a few months ago. Just waiting fo the next relapse - lol. At the minute though I am not really hindered too much. Went shopping in town yesterday and was basically ok. Had to take my son to the opticians and was waiting while he had his tests done and then when I went to stand up when he came out I felt real bad. I went to lean on one of the mirrors and it passed quite quickly so all in all it went well. How did your tests go? Andy, those healthboards are really good I was a regular on there but don't visit so much now! Gloria - yes you do get a bit like that - walking away from people if they so much as sniffle! As you know I did work until recently and it used to drive me mad when my colleagues came to work dying on their feet - it is so not good for people like us! And, customers coughing all over you! Happy birthday to your hubby! Lasy year on my birthday (just before christmas) I was feeling really good and still working etc. We went to a chinese restaurant and I lasted all of 10 minutes. I felt so ill and it came from nowhere - so it was back home for me. Went to work next morning as right as rain and continued until mid - Jan when I had my last major relapse. Well, my tree is beautiful, I got a black one this year, pre lit, gorgeous. I've never really fancied a real one (too much like hard work!). Take care everyone Sandie xx |
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Thank you all for your comments. They mean so much to me. I just hate that you can never let your guard down with this. Just when I went a few weeks free of symptoms or symptoms that would pass fast, I get slammed again! I hate that I can't just get on with my life. I am constantly checking how I feel in all situations. Does anyone ever forget that they have this, for even one minute? Six months and I don't even know what normal is anymore. Sorry if I sound down, but this is getting to me! My normal is to feel off balance all the time. When will this pass? Why don't these doctors have answers? God I am really mad now. I too avoid all people who are sick. Unfortunately, I have two small kids at home that are germ carriers! LOL Thanks for listening to me rant. This too shall pass...God I really pray. Melissa |
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Hi everyone Andy - did think about TMJ as my teeth hurt a bit at one point but not really now so i feel labs is more likely for me. Gloria - i did get my tree (real one, boyfriend did the work) on saturday which wasnt a bad day overall, i went to the cinema too. I know what you mean about gritted teeth and sitting quietly when with people. Although I am trying to take Sandie's advice and keep talking to people if i can otherwise i wont know even if i do feel better. It is so hard sometimes though and avoidance is the easy option. Melissa - i am just the same, my best is off balance all the time and my worst is dizzy and totally exhaused. And just like you I cant forget this and am always checking myself and so conscious of how i feel ALL the time. Sometimes you just need a break dont you - its like i want a holiday in someone else's body please!!! I have had the odd few seconds when i have totally forgotten it and it is heaven but very quickly reality all comes flooding back. I cant imagine my life without it now. Last xmas i had flu and couldnt do anything but i promised myself i would make up for it this year. So much for that! Another new quote for everyone from one of my favourite movies, The Sound of Music: "When the Lord closes a door, somewhere he opens a window". Not that I am religious really but god there has to be some reason for our suffering and hopefully in the end something positive to come out of it. Keep believing xx |
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I am still amazed at how some of you are able to work with having labs. I'm just happy being able to keep up dinner and laundry. It feels like such a big accomplishment attending a Christmas function and being able to enjoy it. I really need to watch my limit not overdo it. The only way I've measured my progress is to compare with how I felt a month ago. I must say that my vertigo has improved, my ears hurt less, feel full or pop. So that leaves me with fatigue, acheyness, nausea, and some vertigo. My eyes also get so tired focusing in big settings. I still would prefer to stay home from social gatherings but feel I must show my face and not be a hermit. I hate having to be treated like fragile china. I keep reading in some posts how some of you push yourself to go for walks and exercise. I find that just makes my symptoms worse. My healing happens with lots and lots of rest, although I try doing some yoga stretches whenever I can. By the way, my eight month mark is coming around soon. Thanks for listening to my thoughts. |
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Another bad day....have to get this off my chest, before I read back and respond to everyone else..so I may double post. I'm crying as I write this. This board has been my only comfort for the past few weeks...first lurking, then reading. Aside from it I am trapped in my confounding mind...wrecked with anxiety, depression and madness. My labs is still undiagnosed though. What do you all think? This started with the flu, and coughing up crap out of my lungs...then weeks later I had a panic attack. Then I developed a stiff neck, vertigo, mild nausea, lightheadedness and lingering anxiety (all over the course of about a month). Sometimes I have feelings of pinching and aching in my arm, neck, and shoulder (mostly on the left side). Strangely, I also have a chronic thumping in my ear I can ONLY hear when I have a headphone playing music in the opposite ear! O_o I'm scared that this isn't labs but something worse (brain tumor?)I'm scared that if this is labs that it will last for years. I'm scared this will last forever. I doubt my ability to make it through the week! Sorry to rant and dump this on everyone. I literally have no other sympathetic ear. I've been called needy so many times. My sister scoffed the other day what I'd do if I was ever homeless or "really suffering." Even as a young woman I'd rather be homeless and in the right mind, then warm, safe, and THIS. In a lot of mental anguish. Maybe because it's due to rain tomorrow. Everyone has agreed this is worse when it rains right? |
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Hi all, Niki - I am so sorry you are feeling so rubbish at the moment. This labs thing is the MOST scariest thing I think I have ever heard of let alone suffered from. All the stages that it presents are most strange & weird to the point that you think it has to be something else and it is so so scary. Mine, like yours started with the nasiest chest infection & stomach sickness I have ever had. My chest was awful. I don't & have never smoked, but it sounded as if I had been on 100 cigarettes a day! With this of course came all the symptoms we have discussed. Off balance, dizzy, nausea like no tomorrow, stiffness in neck shoulders, back, blurred but not blurred (if that makes sense) vision to the point where I had to get new glasses. Everything seemed to 'move' or shudder. Couldn't watch television or bear bright lights, couldn't read and felt panicky as if I had an electric impulse shoot through me all the time. My head feels as if it weighs 100lb and like there is a tight band around it. Headaches - too many I've lost count. Then there was the tingling in my arms & hands and feet and horrendous noises in my ears as well as fullness and ear-ache in my ears all the time. I could go on... DC who has posted on here said they could write at least a couple of pages of symptoms with this. Not everyone has all of these - it is such an individual thing but they all bear the same hallmark of labs. Niki - you may have said in a previous post - but have you seen a doctor or had any tests done to confirm labs? Also, whilst it is horrible but don't feel ashamed or afraid to cry your heart out. We've all done it on here so many times. Even now that I know what I've got - I still cry buckets. It's the not feeling normal, can't do all the things I used to, hating waking up to the same dizzy, odd feelings every day and not knowing how long I am going to feel like this. I am so not the person I used to be and even though I get up and function basically each day - I want to be and do so much more WITHOUT having to think about it or feel so odd. The progress of this is slow, slow slow, but if I look back over the last few weeks & months there is an improvement. I suppose when we are ill normally , we feel horrible for a few days or even weeks, then feel better and regain strength, but with this every day there is some sort of symptom to deal with which will gradually fade and the feeling good starts to outweigh the feeling bad. As the old old saying goes: Time is a healer. Anyway, Niki, I don't know where you are based, but I send a huge big hug to you. Big hugs (to everyone of course) but also to Melissa. You sound down as well. I was feeling really down and depressed with this last week. Crying loads and just found it difficult to cope. Bit better this week, maybe because I have had to be as it was my hubby's birthday (thanks Sandie for your good wishes) and I really try and put on a brave face in front of him. It also must be tough when you have 2 young children to cope with - are they pre-school? Susanne - great to hear from you. So glad some of your symptoms are improving. Like you I have never felt so achey in all my muscles - especially my neck, back & shoulders just like when you have flu except it is there all the time. The tiredness - I only have to go to the shops & I feel I could sleep for a week afterwards. I've had quite a few social events this week & coming up to Christmas - this will be such a test. I am going to do my best though as I've said before, I think the brain needs different situations to keep challenging it in order to heal. Susanne - I did ask before & hope you don't mind me asking, but do you live near Vancouver? I know you said West Canada. Sandie - a black Christmas tree?!! Now that is new!! Something I have been meaning to ask you - as a veteran of this now - how has this year compared to last year Sandie? I remember you managed to go and Christmas shop for quite a few hours last year but with taking Stugeron. Have you coped without that recently? Jemma - have you managed all your Christmas presents yet? I did a couple of hours on Tuesday, but that was enough. Will have to go back into town again next week to finish off. My presents aren't my usual I'm afraid as I cannot browse for any length of time. So it is a small token present and gift vouchers. A bit of a cop out, but know people understand. Anyway, enough of me - loads of love to you all. Keep posting - wild rants or otherwise. This site has kept me from going completely loopy. Gloriaxx |
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Susanne - you are at the same point as me, approaching 8 months! Feels like a lifetime doesnt it! I dont have too much aching with this but the fatigue is awful, it does go away but when it hits it's like the worst kind of tiredness and drowsiness where you just want to lie down and rest for ages. I did think ME/Chronic fatigue at one point but with that the tiredness is pretty much all the time and you need to sleep a lot too (which I dont, its just resting really). Also with that you dont feel off balance like with labs. Did you have your balance tests? I feel like when I do a few things I then need to sit still and stabilise my head and let my brain adjust, so weird! Also like you I understand the vision thing. Its so hard to describe isnt it but it is a lot easier to focus on one thing close to you rather than look out at lots of things. When you tell doctors this they dont understand because its not like there is anything wrong with your eyesight as such. It is such a bizarre condition. Gloria - yes got my presents sorted. All bought online I might add. I order lots online and it is the best way to avoid the shops and also spend time with my laptop on the sofa in the evening choosing things. Shopping/browsing with labs is a nightmare. Niki - you sound really scared. I have been there and I understand totally. It is sooo awful this thing and not knowing if or when it will ever end. If you feel off balance a lot of the time then I cant see what else it can be but labs because all your symptoms seem to fit. I have been through the same thing and no doctors will diagnose me but I know 100% there is something wrong with me and from all my reasearch I just do not see what else it can be but labs/inner ear disorder. Just keep trying to get through each day and dont have any expectations of how you will feel, take each day as it comes and each new symptom as part of the process to getting better. I always tried to tell myself that a change is a sign that this is not just going to stay the same forever and therefore it can go away. Take care xx |
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Hi melissa Yes, you do actually forget that you have this condition but it happens as time goes on. Since I stopped working I am definitely in a better place with this and I am now thinking that the constant effort of going into work and the stress of it all made me that much worse. I am not saying I am recovered, because I am not but I do get good times now! And, I do actually forget now and again that I have it! Last christmas for me was a bit of an effort. My sister and her family were home for christmas (they live down south) and my niece was 5 years old then and very excitable. She had a toy guitar thing and the noise off that and her incessant chatter sent me reeling and I had to take time out for a while and sit upstairs and eventually had to go home (we were all at my Dad's house). That really upset me because I absolutely adore her and don't see them too often. But, the thing is I still keep trying to get on with things and that is basically all you can do. Susanne it is better and the recovery period is supposedly shorter (not for me though!) if you do challenge this thing. I swear by loads of walking (always with someone when I am real bad) and it is not just the challenge to the brain it is the feeling of accomplishing something afterwards that helps a lot. Nikki, most of us don't get much joy when trying to get a definite diagnosis for this. Try not to worry about this too much. Your symptoms sound typical of Labs - we have all had the worry of brain tumours etc and that is an awful thing to go through but here I am - nearly 5 years for me - no brain tumour! I used to get a thumping in my ears which mainly affected me when trying to sleep and I don't know how many times I would jump out of bed and go into my son's/daughter's rooms to tell them to turn their bloody music off to find them sleeping quietly!! That used to really bug me but it is quite rare that it happens now. Nikki, that is so awful what your sister said to you, but try not to be too hard on her, this is a very hard condition for people to understand because you probably look ok. Try not to blame yourself because none of this is your fault - you are not a nervous wreck because of anything you have done or experienced, it is actually controlled by your inner ear and when you start getting less symptoms and your brain starts to readjust then the anxiety and depression will fade away. It is basically just a waiting game and things will get better for you. And by the way, your Labs started after you had flu which is very typical. Gloria - I only take the stugeron when I need to be in busy places like the city centre and have to cope with the bigger, busier shops and I swear it does work for me. I never take it any other time and when I do my weekly shop in Asda I don't bother with it. I do have 'moments' in there when I wish I wasn't in there but I tend to perservere with it as I know I'm only in there for an hour or so! A little tip for those of you who just can't manage shopping or anything just yet, when I started to feel better in the early days my husband would let me go into the supermarket on my own and just wait in the car for me then as soon as I couldn't cope any more I would ring him, hang onto the trolley, and he would come and rescue me! Also, I know it sounds cruel, but when we used to go for walks he would make me walk on my own instead of leaning on him, and this did help me gain my confidence outside again as I had terrible problems with my balance. Gloria - making a comparison between this year and last year - pretty much the same. This year my relapse came in January and lasted over 6 months before I started to feel much better. But, my first encounters with this were definitely the worst, that was the time when I suffered anxiety, lost a lot of weight and thought I was about to die. I am a lot more forthcoming with my condition and do tell people outright if I am somewhere and I am not feeling good and I think that it helps a lot. Anyway, got a million christmas cards to start writing today ( I do my Dad's as well) so better get started on that. That's enough to send anyone dizzy! Take care everyone Sandie xx
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Niki, Gloria and Sandie said it all! Also, Gloria thank you for your kind words and encouragement. It gets me mad now that I can feel fine for weeks and then bam! I get slammed with symptoms again. Niki, I felt EXACTLY the way you described how you feel. I cried all the time, I made promises to God if he would only heal me. I convinced myself that it was a brain tumor. After all, how could anything make me feel so bad?! After a CAT scan and an MRI I know it is not a brain tumor. The anxiety wrecked me. I had to take Zoloft and Xanax for the panic attacks that took over my life. I never, ever had a panic attack before this. Most of the people in my life had no idea how to help me. It WAS awful! After much determination and time I now feel much better. No more anxiety or panic. I can function. I go to the gym everyday for an hour. I work three hours a day. I have two kids, ten and seven years old. I find now that dinner time is my hardest. So hard to cook and clean up and help my kids with homework when I feel so tired and off balance. Gloria, my head feels like it weighs 100 pounds too sometimes. Thank God for this blog! I have been able to do all my Christmas shopping in the stores! I think sometimes I have to concentrate on the positives that have come out of this. It is easy to sit around and feel sorry for myself. I just hope that 2010 brings us all peace from this monster. Melissa |
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Hi everyone: Gosh, some of you are really getting this full blast. Nikki, I went through exactly the same as you 2 years ago. Depressed, panic attacks, so awful, I couldn't figure out what was wrong with me. Cried all the time. Try to be optimistic. It will get better. I have to say that for me the first year was hell. Up and down like a yo=yo, but the second year was better, and I am now into my third year, and have been feeling normal since September. But I feel for you, I know exactly what you are going through. You are not alone. Remember, you are not really sick. You just have a balance disorder. It will improve. you will have your life back, just be patient. Claudia, this illness is very hard, because it just won't go away, and when it does it usually comes back. The first episode, and the first six months was just plain awful. If your ear or nerve is damaged it will take a long time,but you will see improvements bit by bit. There are lots of ups and downs with this disorder. Sandie, a black Xmas tree? How interesting! Does everyone get cheered up when they come to your house? Sounds like you have been more or less stable. Gary, don't know if you have had your tests yet, but if you haven't, really pay attention to how dizzy you get during the caloric tests. Because if you don't get dizzy, or less dizzy in one ear than the other, it means there is a problem. I know people who have felt a difference, and the doc said the test showed no difference. If you fall within the normal range, you could still have a problem. One of my best friends went to work the other day, felt totally fine, and all of a sudden started feeling the room spinning and collapsed. They took her to Emergency, where they kept her for 12 hours, did all the tests, and the docs said it was Labs. She had no flu, no cold, nothing. Has anyone had such a violent onset? She said she couldn't even open her eyes, because it would cause so much spinning. Also, she couldn't lift up her head from the stretcher, it made her feel so dizzy. But her family doc is sending her for MRI and to a Neurologist. He is not sure it is Labs, because she didn't have a virus before and felt fine. Scary! Gloria, Melissa, Cathy, nice to hear from all of you. Jemma, you sound so much better. I really admire you, because I know how awful this disorder is and how very frustrating. Everyone, there is light at the end of the tunnel. The tunnel is just very very long. Love, Maria xxx |
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Nikki, I'm no doctor, but it sure does sound like you have labs. Have you gone to your doctor yet? My heart goes out to you with the anxiety you are experiencing. It's the worst thing ever! At the beginning my anxiety was much worse too. Please don't feel bad about being sick. You are sick!!! You are not a weak person. We are strong being able to deal with this. Gloria, I do live near Vancouver. It is so beautiful out here on the coast even though we get our fair share of rain. We are expecting a little snow out here this weekend. Regarding my tiredness, I was getting my hair done today and just sitting in the chair for an hour and a half made me so tired and made my muscles ache. People ask me if I've done Christmas baking, well it's not really a priority is it? Although I might attempt some with my daughter. Jemma, my ENT was supposed to book my balance? test at the hospital, but I still haven't heard from them. I think I'll give then a call tomorrow and see what the hold up is. One way that I've noticed that my vertigo is better is when cleaning out the dishwasher and bending over doesn't make me as lightheaded. Take care all! |
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Hi Susanne, Your symptoms and mine are very similar. I, too, feel not so lightheaded after I have bent down to pick things up or go to get something from a low cupboard - so strange. Just going over to my in-laws for a meal the other evening (I didn't even have to cook or help with anything), made me feel as if I had walked a marathon. As soon as we got in the car to come home - I fell asleep, totally shattered. This is one of the most frustrating things for me because normally, particularly this time of year, I am so active organising everything. I love the part of the world you live in Susanne. I did write in an earlier post, we visited Vancouver and Vancouver Island about 3 years ago. My husband has relatives who live there. One in Vancouver & one on Quadra island just off V. Island. We had a miracle holiday there & Tofino on the West coast of V.Island is the most tranquil, beautiful place I have been to. Would so love to be there now! Is the area busy because of the Winter Olympics? Maria - great to hear from you and so glad you are having much better times. I do hope your friend is OK. If it is labs, at least she has someone close who can guide her through all the mysterious twists and turns of this thing! Sandie - must tell you! Went to one of our local garden centres & there in the foyer was this huge black Christmas tree. It was dressed with silver and black decorations & looked very contemporary and stylish! Obviously this is a new fashion! My hubby is such a traditionalist (we have got a real tree) - goodness knows who is going to pick up the needles after Christmas?!!! Maybe that should be my task given what I've said to Susanne about bending down improving my dizziness lol!!!! Melissa - hope today is a little brighter for you. Love to all & praying for us all to have good times very very soon. Gloria xx |
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Nice to hear from you Maria. Yes, you are right I am not too bad at the moment. Yesterday was a bit dizzy but today not bad at all. Hey, my black christmas tree is so beautiful, they have been out for a few years now and are very popular. I am starting a bit of a trend because everyone loves it. My 12 year old thnks it is the best tree she has ever seen and my step son has ordered one for his home. So there!!!! Maria, most people do have a violent onset with Labs but lots don't. I was a typical case, i.e. after an chest infection, but for some it comes from nowhere. Mine came on gradually and lasted for a few months with mild dizziness and then it knocked me for six and I could not move my head for three days. The doctor told me to take three stemetil at once and then I was able to get out of bed (just). Things went really downhill after that. Ha, you see Gloria black trees do exist! Have you seen the new upside down trees, now they are crazy! Sandie xx |
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Just as I have been having symptom free days I have been hit with some sort of a stomach virus, now Im feeling weak and achy, good thing is it hasn't affected my balance.. Man this year has been one thing after another... |
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DC - yes I think its the time of year for bugs. I had a sickness one a few weeks ago but it only lasted a few days and didnt affect my dizziness thank god. Maria - thanks for your comments. I am trying to be more positive because as I said earlier if this is labs and is going to get better and not worse then i can deal with it. The fact that the doctors keep telling me it isnt an ear thing really scared me and also made me feel that I must have some really weird undetectable condition. Basically the doctors have made me feel a whole lot worse about all this than better. I noticed your comments to Gary about the balance tests and I thought that was interesting. I definitely felt less dizzy when they put water in my left ear compared to my right and even the test guy noticed a difference in the way I sounded (you have to count up in 3s as they put the water in) but he said the results were normal and symmetrical and therefore concluded this wasnt an ear problem. He suggested the problem may be coming from my feet being a balance thing! I could have walked out there and then !!!! But i definitely think the fact that i was less dizzy on the left signifies a difference in my ears whatever the test said. The left is the side i feel is affected on an everyday basis. Gary - did you get your test results? Gloria/Sandie - are you x-factoring? I think Joe will win but you never know.... By the way, I feel the same as you Gloria and Susanne about bending forward to do jobs, the dizzines doesnt seem as bad. So weird, perhaps the same parts of our ears have been affected because i am sure some people find bending forward makes them worse. Also some people find travel in a car is bad but we have always found that to be good for our balance. So strange isnt it... Niki - how are you doing? Jemma xx |
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Hi all. Gloria, the night out didn't happen that time, the DJ we were going to see postponed the gig, and it's been rescheduled for the end of January. It suited because my friend who's birthday it was arrived back from holidays in Morocco (well for some :)the same night, so would've missed the gig had it gone ahead. I was relieved tbh, don't feel quite up to heading out yet, am just worried about a bad patch hitting while out and so far from home. This thing sucks. I used to love going out. Jemma, I had the balance tests the other day, the girl who carried them out was really nice, explained everything well, but nothing major showed up, so am still none the wiser. She's to post out the results to me and if she sees anything when she reviews them in a bit more detail she's to refer me to a different ENT (I told her I didn't want to go back to my original one as he was useless) so will have to see what happens there. She did give me the name of a person who does physio/VRT so that's the next step. Maria, I did notice that during the caloric test, that after she blew the warm air into my left ear that my eyes didn't flicker as much as compared to the other ear, but the girl didn't seem overly concerned about that. My left ear is the one with the constant tinnitus/buzzing and always seems to have fluid in it. I am having a bad patch at the minute, due to lifting a heavy box the other day, anything strenuous like that always makes it worse. It's like one step forward and two back, frustrating doesn't even come close to explaining this thing. On a more positive note, my brother is home from China on Tuesday after being away for 6 months so it will be good to catch up with him. Take care all, hope Santa brings us all new heads for Christmas :) Gary. |
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Hi everyone: nice to hear from everyone. Sandie, I thought of you this morning when I went shopping and saw a pink tree (hot pink), and a baby blue one. I always thought that trees were green except of course where Sandie lives, where they could be any old colour!!!! Just kidding. Gary and Jemma, that is really interesting about the caloric test. If you google caloric test you will find that unless the problem is fairly significant, the test just doesn't pick it up. Apparently it is not that sensitive. My doc told me that it has to be 40% or more of loss of function as he calls it for the test to really show it. But heck, just because you fell in the normal range (even 20% is considered in the normal range he told me) it doesn't mean you don't have a problem, especially if you noticed. These docs are frustrating, because if they did their homework, they would know that. But if the results are normal, they just send you home. Gary, in my caloric test, they poured warm and then cold water in my ers. I went Xmas shopping for over three hours this morning (very unsuccesful) but wasn't dizzy at all. That wouldn't have happened a year agao, even six months ago. So everyone, it does improve. (I know I sound like a broken record). But I'm almost at the point, where I no longer think about whether I am going to be dizzy. Having said that, this illness if full of surprises and it may still may not be over. Jemma, I totally agree with you that you have an ear problem. If it is alwys the same side bothering you, what else can it be! I knew my left ear was a problem, way before the test because I would get slight stabbing pains, and (Sandie I know you had those too) a kind of fluttering in the ear. Also I felt I was pulled to the left side. So Jemma, if you have symptoms in your left ear and noticed the difference on that side in the test, how can it have anything to do with your feet? Have you seen a vestibular physio Jemma? Very often they are more helpful than the doc, who is just looking at test results. Do you have hearing loss Jemma? Because if you don't it is probably the nerve and not the inner ear itself. Melissa and Nikki, are yu having better days at all? Gloria, correct me if I am wrong, but if you are having problems when you move too quickly etc. isn't that a Benign Positional Vertigo problem? I felt crappy no matter what I did. Thanks for asking about my friend, she is feeling better, no longer dizzy, but very tired and not very strong. A bit worried about the doc sending her to a Neurologist. I am there to listen to her, but my symptoms were totally different, nothing that violent, just felt awful and dizzy every single day. Sounds like her problem may not be Labs. Everyone, if you get dizzy shopping, just get someone else to do it. Because with these Xmas crowds, it's bloody awful if you are down with this. Take care, Maria xxx |
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Hi Gary Glad you got through the tests. But as for you, me and Jemma and nearly everyone else - we get normal results! Maria, is correct - they are not that good and hardly ever pick anything up so really I don't know why they bother! Glad you mentioned that lifting a heavy box made you worse because the same is true for me and still is. I used to be so strong before all this (worked in a garden centre lifting heavy compost and pots all day) but now, and ever since I came down with this condition, it sends me so dizzy. Same goes for carrying bags that are really not too heavy, if the bags are different weights it really affects me!. Maria, yes, there are loads of different coloured trees where I live, we have green (of course), black, white, gold, hot pink, purple, you name it! My daughter has a small one in her bedroom made of black feathers. So, this year I have been able to manage all of my christmas shopping (with minor blips) but last year it was horrendous, so that's a good thing. Maria, well done with yours even it it was unsucessful - it gets worse every year trying to think of something to buy! Maria, yes, I did have slight pain and that fluttering going on inside my ears - that was weird and I also got pulled to the left. Funny you should mention that because it hadn't happened for ages until yesterday! This time though I was feeling a bit dizzy and was being pulled to the right. I wasn't aware of it but my daughter kept complaining that she was going to end up in someone's garden if I didn't stop it! Gloria - were those two huge BLACK trees I saw on X Factor last night? - I'm sure they were - lol! Poor Stacey gone - I did love her but still hoping that Joe's going to win. And, it's not because he's from the north east (LOL)! Take care everyone Sandie x |
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Maria, I have been better than last week. I caught a cold and it was that time of the month. So I have been having better days. I am so tired by the end of the night. I have been able to go into the city (NYC) and see a show and have dinner out. I felt a slight bit off. It is raining today. Why does the rain affect this so much? Gary and Sandie, you mentioned that lifting heavy objects makes you dizzy. I think it is because there is a nerve called the greater occiputal nerve that runs up your neck and branches out behind your ears. The end of this nerve is your vestibular nerve. So when you lift something heavy, the muscles put pressure on the greater occiputal nerve and that causes dizziness. Just guessing...LOL I remember when I first went to my ENT in July she said that the labyrinthitis would last 6-8 weeks and then I would be fine. Maybe, at Christmas I would have a "moment". HA HaHaHaHa I have had a "moment" now for 6 months!! I swear these dr.s have no clue about these vestibular disorders. I would love for just one of them to experience what we experience day to day. Today is my 39th birthday. All I want is a new head!! Melissa |
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Hi folks. Melissa - happy birthday! Hope you are getting a bit of time off from all this rubbish. I think you may be right with what you said about that nerve, I did a bit of a search on it and it seems to tie in with what you've said. Convinces me that it's labs and nothing worse. Sandie, it was a bit predictable about the results of the tests alright, but it's another thing to tick off the list of what could be wrong. Going to give that VRT specialist a call tomorrow and arrange a meeting hopefully before Christmas. Like you I used to be active - loved going to the gym often and do a bit of weight training. After the chest infection early last Jan, I went back to the gym twice or 3 times and then it hit at the end of the month - so again what Melissa said makes sense. Maria, glad to hear you got out for the shopping without any dizziness. I'd imagine queues and all the commotion will be hard to deal with, but it'll have to be done soon :) Next year is a big year - two weddings, two, possibly 3 stag do's, a friends' 30th birthday, so quite a bit going on. Getting Christmas out of the way first is the main thing - I'll be heading to the airport in Belfast on Tuesday night to collect my brother, will insist my mother comes along in case a bad patch hits while driving. Ok, that's my lot, am glad I read your posts about the lifting heavy stuff as it's reassured me a bit that it's just inner ear crap and not the tumour flaring up. Thanks all, Gary. |
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Gary, Thanks for the birthday wishes and I am glad that I could help. My labs started two weeks after I pulled a muscle in my neck at the gym. I have never been the same. I never had a cold or upper respiratory infection before the labs onset. So I know it was from the pulled muscle. I also had an MRI and it showed that I have three bulging discs in the C2, C3, C4 position. Exactly where the greater occiputal nerve runs through your neck. Try to ice your neck, it really helps. So does VRT! Melissa |
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Hi Melissa, Happy birthday! Gosh going into the city, then a show then dinner. That is truly amazing! I am now after two years feeling comfortable about going on the subway and not freaking out, and going to dinner. But I still haven't tried a movie. You do sound like you are gettig better. That's great. Sandie, like you I haven't experienced the ear stabbing pain and the flutteing for a long time, over six months at least. But the first year it was on and off the entire time. Isn't shopping a pain. I don't even enjoy it. Everything goes on sale anyway in January. Too big a deal. But at least I don't have that awful dizziness I had last year (and this summer) so I am grateful for that. Nikki, any improvement? We are all thinking about you. Maria xxx |
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Hi all, Another week-end out of the way! Haven't felt too bad - just felt off-balance rather than dizzy. Did a bit more shopping but have been sooo exhausted come the evening. Melissa - belated Happy birthday! Glad you got to go into NY - that is a sure test for any person with labs lol!!! Sandie - yes I did see the trees on Xfactor!! Just because you're the trendy one!! Anyway, many congratulations to you & your fellow countrymen up in Geordie land on Joe winning Xfactor - he did do fantastically well. Gary - I had a chest infection with my labs - so maybe we caught the same type of virus. Anyway, are you having anymore symptom free days yet or are they days of milder symptoms like me? It will be wonderful to feel free of this thing. Jemma - how have you been? Speak soon. Love, Gloria x |
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Hi everyone I've been coping ok these last few weeks, the weekend was ok. Managed to go out for a meal and the usual food shopping. My left ear is still not right and has been making snapping sounds more these last few days. I get that twingey stabbing and fluttering and its like there is fluid in there like Maria and Sandie describe. Maria - I agree with you about the caloric test, it hardly seems worth doing because unless you have really serious damage then the doctors just use it as a reason to say there is nothing wrong with you. I feel an internal swaying off balance feeling most of the time but that isnt as bad as the dizziness. I still wake in the night feeling dizzy and get the interimittent tingling feelings. I just try to talk myself into not worrying and reassuring myself it will pass. I am prepared mentally that full recovery will be a long haul but as long as it keeps improving I can bear it. I just dread getting setbacks and there are so many with this thing. I am definitely finding things easier than I did a few months ago but I cant relax until I know this will defnitely go for good. Happy birthday for yesterday Melissa - hope it was enjoyable despite the labs. Has anyone read 'A Dizzy Spell' by Gillian Gabreille Barnet. Its about £5 from Amazon, quite useful for labs sufferers. Take care all x |
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Thank you everyone again for the birthday wishes! Jemma, you couldn't have said it better. I hate the setbacks from this. I wake up everyday wondering how I feel. You can have two weeks with nothing and them BAM get all the symptoms back again. I just want to go about my life without thinking about this all the time. I am going to check out that book you suggested. Thanks Melissa Niki I hope you are doing well. |
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Hi all, Talk about setbacks! I was on the phone to a friend of mine this evening when I came over hot, dizzy, panicky and shaky just like I did a few months back. I haven't been that bad for ages. Just as I was talking about feeling better over the week-end in my earlier post!!! AAAAAARRRRRgh!!! Melissa, you are so so right. Just when you think you have this thing licked then wham back to square one. I am so so fed up now. I only wanted to feel a bit better for Christmas, so I really hope this isn't going to be weeks before I get back to how I was this week-end. Jemma - good to hear that you are having a good few weeks & hope it continues for you too, but it is so tiring not only having to deal with this but the anxiety of wondering when it will ever go and stay gone! On that note I am now going back under my duvet - and I haven't said that in a while. Hugs to all, Fed-up Gloria x |
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Gloria - I completely agree and sympathise. This labs thing is just the pits and so unlike any other illness. I knew as soon as it started it was just not a normal thing and was not going to go away quickly. I even have the emails i sent to my boyfriend from work when this started saying how strange i felt and he told me to go home and I said if I do I dont know when i will be coming back. It was like i knew even then this was a real life changer. Anyway I have learnt that because this is so unpredictable you just cant plan your recovery. Its tempting when you have a better few days to think you will keep improving in a linear way but you dont. You literally cannot plan ahead and have to accept everything it throws at you and try not to get too disheartened. The anxiety is the worst though and i never want to get that again but you just dont know. I am sure it is just a blip Gloria and overall you are improving but you do worry you are going backwards dont you, its such a nightmare. It is like someone has cast a spell on you and you cant shake it off. Keep the faith, we have to keep believing we will recover one day. x |
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Maria, The sales in england start before christmas! I do my shopping in November and early December and it is soooo annoying that everything you have bought is down to half price BEFORE christmas. It is so unfair! Gloria - I went through the stage you are going through now - sometimes just dizzy, sometimes off balance, sometimes both together. It is so mad this thing, you never know what's next! Yes, my boy Joe won the X Factor. Have you seen the daily mail today - saying that he is going to be a one hit wonder and is just a karaoke singer. Why can't they leave people alone? I personally think he has a fantastic voice. Why do they make such a fuss about it being karaoke - they have to sing known songs otherwise no-one would tune in!! Sorry to hear that you are not feeling so good today - it's always like this, one step forward, two steps back. Jemma - I'm different to you in that the off balance feelings are the ones I can't cope with! If I had to choose between the two I would pick the dizziness as I just couldn't function when I was all over the place. The 'whooshing' feelings were the worst, when I would feel as if the world had moved from under me and I would be grabbing on to the nearest thing to me. Melissa, happy birthday to you - a December birthday like me! Hope everyone is feeling better today. Sandie xx |
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Hi Jemma, Thank you so much for your reply. I know that this is what labs does and you try and talk sense into yourself, but each blip disguises itself in so many different ways, especially when you haven't had a particular symptom for such a while - for me I really thought the anxiety thing had passed. As always when I'm like this, I didn't have a good night, so today have felt really tired. This evening is a bit better, but as you say it is so unpredictable and you are right because when I look back and compare my symptoms to that of a couple of months ago, I have progressed - but symptom free would be good or is that being too greedy?!!!!! Tomorrow I have to go into town again and try and do a bit more Christmas shopping, so hope I feel ok. I have done some on the internet which has helped, but need to buy some gift vouchers - a cop out but less stressful. My boss has also been on the phone again - left a message, so I have to call back. I am dreading that because they have been really kind to hold my job open, but there is no way I feel I can cope, so I am going to have to tell them I won't be back. I do so admire you Jemma in the fact that you have kept on working through this - you are amazing. Anyway, thanks for your kind words Jemma and you are right, we have to keep the faith and as Melissa says, this too will pass although mine is crawling along and is taking it's time to pass!!! Hugs, Gloria xx |
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Gloria, I think you and I have both hit a bad spot again. Like you, today I feel weak and shaky with sore muscles and very down. Do you ever get the chills with this as well? Sometimes I also get a bit of cramping and diarhea. Oh bother!! This past Sunday we hosted an engagement party for our son and his fiance. I paced myself and started preparing for the party days in advance, doing just a little each day. I actually dusted my house. I hate dusting, but it had to be done. The day before the party I cracked the whip and had my family help clean the house. I bought some appetizers and made a few dips and the party was on. I'm so thankful that God gave me the strength that day and I enjoyed it. It's so discouraging to feel so rotten after having some days where you feel so much better. I'm so tired of this!! You were asking about the upcoming Olympics. Yes there is much happening in Vancouver and Whistler, but we don't notice too much since we live an hour out of the city. Jemma, believe it or not, I called the ENT about the delay in my tests and they said it'll take about 4 months for me to get in. That is how busy they are. Unbelievable! I probably won't even need the test by then. Stupid. Thank-you for listening to me. |
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Thank you for your nice words Gloria. That is why this site is so important because only we can truly understand the horror of this thing. I just dont think others can get how this can go on so long and the mental anguish we go through trying to deal with it. I am scared I am going to have a set back because my left ear has gone more snappy and noisy again and I think there is fluid in it. Last time that meant the dizziness went a lot worse and I just dont want it to happen again but am bracing myself. I keep trying to tell myself I have improved but it is so hard when you dont feel right. I dont blame you about not going back to work Gloria - it will only put you under unnecessary stress and I can say from personal experience that the first few months back were sheer hell. I just felt like crying all the time. I am more used to it now and am coping a bit better but it isnt easy and there is so much i feel i could not do. Just focus on your recovery and doing your own VRT. How are those tablets the neuro gave you - have they done anything to help? Susanne - I had the chills, cramps and diarrhoea a bit in the first few months but that seems to have improved. Do you get any tingling in your limbs? I can believe the delay with ENT - they are awful arent they, even in your part of the world it seems the same. I paid privately for my balance tests. It was £245 but I would have had to wait months on the NHS and I was desperate for answers. Chances are you will be like most of us on here and nothing significant will show up but it is nice to know. How is everyone else? xx |
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Hi Everyone! Just have to ask if the weather affects anyone else? It has been rainy and cloudy all week. I feel the worst on those days. Today it is sunny and cold and I know that I will feel much better. I have been doing fine during the day, but wow at night I get slammed! Around dinner time (of course) I am just so tired and feel just off. There is no other way to describe it. I think what is so frustrating is how hard we all work to heal and sometimes it just is not enough! Keep the faith and this too shall pass. Melissa |
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Hi again. Well... my VRT experience has not been that positive. I live in a small town and we only have one PT center. I went there and saw the so called "vertigo expert". She decided based on who knows what that I must have BPPV. I told her that the ENT tested for BPPV and it was negative but he felt it might be viral. That did not sway her. She has since given me all these variations on the epley and brandt daroff exercises in the book. Needless to say I have not felt better. I have started my own exercises based on what I've seen on-line but I haven't seen any improvement yet. I go back to see the ENT at the end of the month and if I don't get any answers then I think I'll look for a neurotologist. Jemma, are you still in the same boat with the "no concrete diagnosis" thing? I cannot stand not knowing for sure what this is. The fact that I don't have any "ear" symptoms (hearing loss, ear pain or fullness) really makes me wonder if this is even it. Not being able to have an MRI is really making me suspect the worst. People talk about seeing improvement over the course of months... well I'm in my 6th month now and I don't feel any different than my 2nd month :( I'm just so frustrated. Before my heart problems started about a year and a half ago I was such a healthy person and now I feel like such an invalid. The labs (or whatever) came on so soon after my heart diagnosis I know people must think I've turned into a hypochondriac. I've quit telling people how I feel... in fact I pretty much just avoid most social situations. It's no way to live but I don't know what else to do. I don't think my husband (or anyone else for that matter) really gets that I feel miserable 24/7. Sorry to vent.... but I think you all are the only people who might understand. |
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Hi everyone, Susanne - again, our symptoms seem mirrored. The bad patch that hit me the other night was exactly as you describe. Shaky, achey, upset stomach followed by the shivers and of course feel so much more off-balance. Congratulations on your son's engagement and the fact that you coped remarkably well. It is all about having to plan so much more and cut corners whereas previously you wouldn't even think about these things. Good for you for though Susanne. Well, I am back to see the neurologist again this afternoon. I get the results of those ridiculously expensive blood tests. The tablets he gave me may have helped a bit but don't know whether I would have improved a little by now or if it is the tablets - who knows. Amanda VRT - again, this is something I have been doing for a while now. Whilst it helps when I do get very woozy, I am not sure if it has made me better more quickly. Given that I am at 6 months now, I may have got to the same stage without it - again - who knows. For me I think it hasn't helped with the stiffness in my neck. As part of VRT is to turn your head side to side and up and down quite quickly, I think it has strained my neck muscles more. What I have noticed is the set-back I had the other night I have got over more quickly than previously - so, I suppose that is another sign of progression. Anyway, it clearly is a very slow progression with digression - a lot!!!! Speak soon, Take care all Hugs Gloria xx |
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Hi Amanda Yes im in the same boat as you, no diagnosis or help from the doctors at all. I am due to see a neurologist in jan but not holding my breath. I am basically gonna have to talk them into diagnosing labs as they are clueless about it and would rather just dismiss every symptom as nothing to worry about. I understand about social situations, I too avoid them at all costs. I force myself to work, do you work at all? My parents have invited me out for a meal with them on xmas eve. I have agreed with trepidation as i know it will be such a test for me, im scared already! Gloria - you got through your meal out didnt you. I just hope I can too. Any plans at all for xmas? Amanda - do you feel dizzy or off balance all the time. I do! If you do then i dont think the VRT is right if she is saying it is BPPV as i understand that comes in episodes of spinning and is not present all the time. I dont think you have to have ear symptoms for it to be labs. Mine didnt really develop until a few months in and some people dont have them at all. Gloria - how did you go on with the neurologist? any joy? God, im fed up with this thing. I just want to look forward to the new year without this hanging over me. Please please let us all improve soon xx |
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Amanda-Don't worry about it being a brain tumor. It is most definitely labs. The physical therapist probably only deals with BPPV and so that is what she thinks "vertigo" is. Try to find a new physical therapist that specializes in vestibular issues. Today I was out to lunch with my best friend. I was feeling great this morning, then bam, at lunch I felt god awful. Just swirling in my head and a bit nausous. I am so SICK of being sick!!!!! I went to an allergist today too. The ENT told me I had an allergic looking nose. He suggested that I see an allergist. The allergist said I did not have an allergic nose and my tests all came out negative. NO allergies! What the hell do these doctors learn in medical school? Dear Santa, I want a new head for Christmas! PLEASE!!! Melissa |
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Jemma, I do work. I'm a high school teacher. Gah! On the plus side I do have the next two weels of for holiday. I do feel constantly dizzy.... or fuzzy. The only time I feel somewhat normal is when I am laying down and still. Also I have not had any spinning since the first month (and even then I never had much). The worst I feel though is when I move my head. Okay... I have this theory that makes me feel like labs is probably what I have. I know this is just me speculating and I have no real idea what I'm talking about but it does make me feel a little bit better. And why am I putting this here? Because no one else cares :) So the same week my dizziness started I developed a large floater in my left eye. I have never had a noticeable floater before and I went to the eye doctor who was able to see it but said my retina was fine and it was normal to develop these as you age. This is typically not thought of as a symptom of labs BUT consider this - floaters are sometimes caused by inflammation. They are groups of white blood cells that have gotten into the vitreous fluid around the eye. Maybe then the same inflammation that caused the floaters also caused the labs? I only think this theory has some merit because I have seen other people on-line (even on this page) talk about developing floaters at the same time as these symptoms. I think I think about this way too much :) But it would give me so much comfort to have a diagnosis, so coming up with these explanations does make me feel better. |
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Amanda- I too developed floaters after getting labs. It's funny because a friend of mine this summer was complaining about them. I had never heard of floaters. Then a few months into labs, I developed them. Melissa |
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Hi all, Amanda - I have developed loads of floaters swimming about in front of my eyes all the time. Although I have had a few in the past (an age thing) they have increased since developing labs. Had an eye test done a couple of months ago as my vision had also been affected with this. I wear varifocal glasses and my brain could not cope with the dizziness and trying to focus through different range lens. Anyway, nothing showed up in my eye test as abnormal. So I have put it down to age although they have increased lately. Jemma - the neuro on Thursday - well he confirmed (as we all thought of course!) that nothing showed up in those expensive blood tests (felt like asking for a refund!!!). He said that the cycle needed to be broken between the brain and all the nerve impulses that control movement i.e. eyes, balance and muscles. So he just increased my amitriptyline to 20mg and I go back in another 6 weeks. He said that obviously my symptoms had gone on longer than most (?!!!!)- do they really know? He said it can come back, not so severely and I would recognise the symptoms and therefore wouldn't get so anxious. So was there anything he was going to tell me that i didn't already know!! Answer - NO! He told me to keep up with my VRT and do Pilates and go to the gym to do more robust balancing exercises - simple really!!! So it will be interesting to see what your neuro says when you go to your appointment in Jan Jemma. Go for your meal out with your parents Jemma - you might suffer the following day more so, but you do feel a sense of achievement. Because of necessity, I have gone into our local shopping centre quite a few times of late and it is much easier to cope with now than it was a few weeks ago. I have felt a little better the last 2 days after my ghastly attack the other night, but as i sit here typing this my head is all swirly. Still not sure what we are doing over Christmas. I have not committed to anything. So on the day we will either be on our own with perhaps our neighbours popping in for a drink and mince pie or if I feel reasonable, we may drive down to Devon to visit my relatives - just for the day though. It will be a round trip of about 300 miles, but I can't face staying in someone else's home just yet when I don't know how I'll be when I wake up - especially. It's just that I so want to be with my family and friends in one sense but if I feel bad, then I just like to be on my own. This is such a nightmare time isn't it? I have never been in such a situation like this before and I hate it so so much - I'm sure you will all agree. Melissa - put me on your Santa list for a new head too!! Love to you all - speak soon. Gloria xx |
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Gloria- Ah they went the antidepressant route with you too! I myself was prescribed Lexapro by three different doctors. It did not agree with me, as they jumped me on at the highest dose. All during my worst time with Labs. I was up for four straight days!!!! Zoloft I tried next. It worked, but...I have always been very thin and have a fast metabolism. I run 4 miles everyday and am gaining weight!!! Ah the joys of labs. I was symptom free today! Yippee! If only I could count on it lasting. I know that I will be wolloped again, just don't ever know when. I just want to be symptom free on Christmas. Santa please give us new heads. PS where is Niki and the rest of the crew on here? It seems like it is just Jemma, you and me. Melissa |
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hi all It is very quiet here, is everyone hibernating from the snow. it is really heavy here in the north west. Amanda - you sound very similar to me - no diagnosis, constant dizzy/fuzzy head and trying to carry on working. I dont know how you do it as a teacher though, that must be really hard. I recall you saying you thought your symptoms may have been caused by medication and i also think mine might have been too. I havent had floaters but lots of othr people have, although I do suffer with this intermittent eye problem since getting this. It is like my right eye feels strange and stiff and tingly. It happens for a month then goes away again then returns, it is so weird but like you say I am sure this is all to do with nerve inflammation so probably all related. It would be good to have a proper diagnosis wouldnt it but it seems we are asking for too much there!! Gloria - what a surprise the tests did not show anything ! I dont know what your neuro means about breaking the cycle, sometimes you wonder if they know what they're talking about at all dont you! I wish the doctors would be honest with us and tell us that labs can last for ages instead of making us feel abnormal that this is going on so long. It even says on websites like wikipedia that the dizziness and disequiliburium from labs can last months and years. Melissa - at least you are getting some symptom free days although its so unpredictable isnt it! I want a new head too! or new ears at least! Speak soon xx |
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Melissa Strange you should say about you gaining weight with Labs and you are naturally a thin person. When I first got Labs I lost over two stone. I am not saying I am naturally thin (maybe 20 years ago!), but once I started getting back into everyday life I started to put the weight back on. It probably stayed off for about a year from the onset of Labs. Since then I have totally changed my diet and eat only healthy food, fruit and veg. Yes, I do eat chocolate and the odd bag of crisps but I have put all that weight back on and more and am now the heaviest I have ever been. I am more active than I have ever been, walking up to 20 miles a week most weeks especially during the summer and still the weight gain! The amount of sweeties I do eat should not make me gain any weight! I have a friend who has suffered with Labs for nearly the same amount of time as me (nearly 5 years) and she too has had a lot of weight gain and cannot shift it. She too is now more active than she ever was! By the way they also tried the anti depressant route with me and I told them what I thought of that! They always do that - try to make out that you are suffering from anxiety/depression in the normal sense not from a Labs related sense i.e that it will go away. melissa - my last post went missing - so I did post and I am still here lurking about - lol! Amanda - a teacher - and all those horrible high school kids - lol - I don't envy you your job! It must drive you mad at times all the noise that they make - that has always been one of my main triggers, noisy kids. I have always loved kids, especially the little ones but I have found on many occassions that their incessant chatter brings on my symptoms. Gloria - your consultant, when he says breaking the cycle sounds like he is talking about anxiety/depression. Like I said before they always try and put it down to that when you know that it is not that. The Labs controls the anxiety levels can't they get that through their stupid little heads? Jemma, it says in loads of places on the internet that Labs and its symptoms can last for years, you would think that they would just do a little bit of research these doctors wouldnt you? I have had a couple of bad days this week but not too bad on the grand scale of things. It's my birthday tomorrow so I hope I get a good day. My niece is taking me out for lunch (aah, sweet) so I pray I am good for that. Take care everyone Sandie xx
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I have read alot about Labs and Anti-Depressants were never really part of the rehabilitation process, it may help but then you have the problem of trying to get off them which is very hard due to the withdrawals.. Im still convinced it just slowly goes away as you body and brain compensates for the damage done to the vestibular system, VRT seems to be the most recommend rehab for Labs but I believe that you can do this yourself through exercising and staying active, that in itself challenges your balance system which helps your brain compensate. Even though Im not 100% I have found that for the last 12 months I have slowly got to where I am today and month to month I notice small changes in the way I feel, I believe we will all beat this, we just gotta keep that positive mental attitude. |
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Sandie- I lost 10 pounds this past summer from labs. I meant that the Zoloft has made me gain weight. I too have never been more active and eaten healthier. I run 4 miles a day. I do sit ups everyday. I am at the damn gym for an hour and half each and every day!! I eat fruits, veggies, drink tons of water and green tea. I gave up coffee and wine and soda altogether. AHHHH!!!! Today I was symptom free again! Again I am not counting on it lasting. Went to my in laws Christmas party and was FINE!! I just hope to god that on Christmas I am fine. I fully agree with all of you who refused the anti depressents. But...my anxiety from the labs was so bad that I could not cope! I literally was on the ground in a panic for a good week. I go to an excellent phsyciatrist, who will wean me off in 6 months. I know that if you titrate off them, there are no withdrawals. I am glad that I began to take them, Zoloft has literally saved me. I was way to anxious to deal with the labs. Now when I get wailed with symptoms, I don't get nervous at all. Keep the faith all!! Melissa |
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Hi all, Sandie - Happy Birthday to you, happy birthday to you, happy birthday dear Sandie - Happy birthday to you!!! Glad you can't hear me singing that!!! Hope you have a fab day and feel 120%! Apparently, the reason the neuro put me on Amitriptyline was not for anxiety/depression, but it is also used as a pain block. What he wants to do is try to de-sensitise the nerve endings which seem to be putting all my neck & head muscles into spasm. This in turn is delaying my vestibular system from compensating properly. I suppose he should know what he is talking about?!!!!! Anyway, the increased dose seems to be making me more dizzy - so I really don't know. If I continue to feel like this & see no improvement then I will go back down to the lower dose & ask to come off them when I see him in a few weeks time. I absolutely hate taking meds like this as I always consider myself to be a positive & pragmatic person - although - this has tested me to the limit. And, yes, I have noticed that I am eating more and a few pounds have gone on - oh no!!! But considering I was not eating hardly anything at the beginning of all this, of course you would lose weight. So I must watch my eating. It is all the chocolates etc at this time of year. I did get the nausea feeling back yesterday, though which I haven't had for a while. Well, another few days to Christmas - is everyone ready? Melissa - my mum-in-law flys out to New York tomorrow - is the snow really bad? She is staying with her son, my brother-in-law and his family in East village in Manhattan. They then, on Christmas Eve drive up to Boston where she will stay for the duration. Are the roads OK? I am a bit concerned as she is 83 - although much fitter than me, especially at present. Speak soon - again have a lovely day Sandie. Love & hugs, Gloria xx |
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HAPPY BIRTHDAY SANDIE! Hope you have a dizzy free day xx |
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Gloria- The roads are all clear. We are supposed to get another small snow storm Christmas Eve. The department of public works for each town and the state really clear the roads all night long. We drove out to my in laws yesterday and there was no problem. Sandie-Happy Birthday!! I hope it is a good one for you. Again, I have felt fine so far all day. I went to my daughter's concert at school, then her class party. I am off to my son's concert at school and then back to my daughter's class party. Melissa |
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Happy birthday Sandie! Hoping you have a better day today. And merry Christmas and new year to everyone, won't be online for the next week or so wishing all of you all the best. I'm determined to make next year a better one than this one was (wouldn't be hard lol) Gloria - am just back from the physio less than half an hour - she said the same - I have problems with my lower neck on the left side causing muscle spasms and stiff vertebrae so she gave me exercises to do over the next while to try and relax the neck muscles. Also check your posture - she said mine was awful - slouching forward puts more pressure on the neck and the joints which doesn't help. Feeling better again this last while, hope it continues. Happy holidays all, Gary. |
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Hi everyone: Sandie, happy birthday! I have been posting on this site for almost 2 years, and you are one of the few of the "old-timers". (I don't mean your age.) But do you remember Katie from Scotland, she used to post all the time. And Skye? Anywat I hope you had a nice celebration with your not-too noisy family. I agree with you regarding kids. My kids are now in their twenties, and I have less patience with children. Can't stand all the chatter. And some of them are such brats!!! Gloria, sorry to hear you had a setback. This illness is the pitts. Unfortunately it can go on for a long time. And when you go through it, you feel like it's never going to go away. I had a few off days last week, but that may have been weather-related. Did manage to do all my Xmas shopping, ran around malls for hours at a time, which would never have happened last year, even less the year before. Amanda, I had the same symptoms, not dizzy when I was lying down, but dizzy when I was up and especially when I moved my head. You are brave to tackle high school kids with this disorder. Melissa you are doing great with going to all those activities for your kids. I still haven't attempterd a movie, Over two years now. Jemma, I know you are having ups and downs but you really do sound much more optimistic. This site is a godsend, because you realize you are not alone. So thank you ,thank you, thank you Rich for maintaining this site. I know all of us are very grateful. When you get to the perly gates and they ask you what you have done to inherit the kingdom of heaven, tell them you ran a support group for dizzies for years, and I'm sure they will let you in. A few of you mentioned the lack of social life when you are going through this. I din't go anywhere for so long, just read books and went for short walks. It's really hard to enjoy it when you feel you are goig to keel over any minute, and I always had the sick/nauseous feeling that accompanied it. People thought I was a hypochondriac, I just stopped caring, because being home with a book was easier than being out and feeling terrible. What can you do? You have to cope the best way you can. it sure is a long road. Maria xxx |
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Hi everyone, Just thought I'd sign in to wish everyone a happy Christmas and give you a quick update on what's been happening with me. After having a particularly bad couple of weeks recently I thought I would try hypnotherapy to see if that might help with my anxiety - maybe to see if my brain might react better to the bad signals it gets from the inner ear! It was about a week ago and its hard to tell what sort of effect it's had as I am now staying with family for Christmas in Adelaide and I usually only have problems when I'm on my own or just with my kids. Anyway, I arrived to stay with my parents and my Dad had bought me a "power balance bracelet" which is some sort of new technology that is supposed to help with your core strength, flexibility, balance and general well-being. Check it out on the internet if you are interested. So I've been wearing that for a few days as well! Then today I went to see a doctor who performs cold laser therapy on people with tinnitus, migraines and other conditions. He told me my ongoing tinnitus and dizziness is all related to my neck as a virus such as labyrinthitis can't last for more than a few days! I almost laughed in his office - as we have all stated it is almost funny how few people have any understanding of these things! I was interested in your comments Gary about posture, as this doctor also told me my posture is terrible, and that if I improve it and put wheat packs on my neck it will improve. I won't So as you can see I am having a bet every which way - not that I am too bad but its just an ongoing thing that bothers me. Hope that you are all able to enjoy Christmas with your families, take care everyone Cathy |
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Hey Everyone! It's been nearly two weeks since I posted last! I'm overwhelmed by everyone's support and so thankful. I definitely had a huge freak out moment. It's strange how going through this can change so much in our lives. I've become very introverted, and been spending a lot of time reading. Slowly....oh so slowly the fear is going away. This is a blessing because that was the worst part! Everyone's comments have comforted me so much. I honestly would not know what I would do if I didn't have someone I could talk to about this. Happy to report I'm feeling MUCH better. Still get nervous sometimes though. I haven't gotten an official diagnosis. My doctor keeps looking in my ear and telling me they "look fine" even with the tinnitus. But I'm resolved to stay strong. I keep telling myself I'll be fine in a few months. I just gotta hang in there and one day this will be a bizzare memory. Thanks everyone again for the advice, concern, comments and understanding! Just wanted to update everyone very quickly! Now I need to go back and read up on everyone else! :-D |
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Hi everyone Thanks so much for your birthday wishes - I did have a lovely day. My niece and her boyfriend (first time I've met him) took me for lunch and my son and daughter tagged along too. I was fine in the pub apart from when you wait in line for the carvery when I felt pretty bad. It was so damn hot there beside all those hot plates and the chef disappeared to get another turkey which meant we had to wait quite a while - no good. However on returning to my seat I felt fine and we did have a really nice time. My daughter came home from uni late afternoon so I now have all my family home. Maria, I do remember Katie and Skye (senility hasn't set in yet!). Katie was like a breath of fresh air - absolutely mad that one! They must be ok though so that's good! Cathy - let us know if your bracelet works. I am like you at the minute - life is not so bad but it still does bother me! My kids are off ice skating now - could you imagine us doing that with out dodgy balance!! Take care everyone Sandie |
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Cathy: I LoL'ed at the comment your doctor made. A couple days! haha! But on a more thoughtful note, in my obsessive research I have come across one or two bits of info here and there that tie neck issues to feelings of lightheadedness (because the muscles connect to the brain?) It seems that days when I wake up with a stiff neck, which I chalk up to a bad sleep position, the fog seems worse. Wonder if there's a connection. Hmm. Melisa, Sandy and Gloria: I too have had nausea/diet issues with labs, and have lost about 7-8 lbs since this ordeal started (so about 4 lbs a month). The smell of food makes me lose my appetite, and what's worse is I'm hungry up until the food is prepared and I start to take in the smell and sight of it. Then suddenly the idea of actually eating is rather off putting! Yikes. I'm somewhat chubby though, so people have been complimenting me on the weight loss (even when I explain the cost)! I know they mean well, but I'd like to kick them all the same. LoL This should make christmas dinner very interesting! :-) Thanks for the hug too Gloria, and very kind words from you and everyone! Hugs to everyone for Christmas as well, and the holidays! Oh and mini update: My blood work showed a severe Vit D deficiency. Bah....I still believe I have labs, but I guess some of the symptoms overlap (anxiety, weakness, brain fog). I don't know where one condition ends and another begins, but the vit d supplements have "taken the edge off" and I don't feel as depressed. :-) Good christmas gift! HAPPY HOLIDAYS (again) to everyone! |
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Hi all It's not been a good day for me dizzy wise. Honestly will this ever end? Was off work yesterday due to snow so had to try and catch up today but felt so woozy all day. I finish for xmas now but have to go in for cover one day in between now and new year. Nice to hear from you Maria and its reassuring to hear that even though you arent 100% you can see improvement over the last 2 xmas times. I havent managed any shopping really, just online stuff. I have been for a few quick quiet meals with my boyfriend but anxious about the meal with my parents on xmas eve - 3 courses in a busy restaurant HELP! Glad you feel a bit better Niki - it sounds like you and also Cathy have some lingering anxiety problems which must be horrible. I really hope I am over that but for me my balance is still really off and it is such a horrible feeling. I hate it so much! Melissa - you sound as though you are getting better but as you said before it is so up and down you can never relax and forget about this. How are you Gloria - did you ever speak to your employers? Are you still seeing the therapist for VRT? Not much on TV over xmas either is there! I will have to get out the DVDs I think. Speak soon xx |
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Hi everyone, Well, just seen my mum-in-law off to New York. Heathrow airport was heaving - goodness knows what it would have been like if there had been a strike. Felt really sad as we could have been going too if I had been well. Don't know if I'll be brave enough to fly again after this. Have felt really odd this last couple of days. Apart from feeling really swimmy headed, but have had a migraine from hell plus an odd sensation at the base of my skull. Feels really sore and painful. The thing is, you think it may be something else after all, but, to be honest I've got past caring. Whoever is responsible for all of this they can throw at me what they like. Really pleased you are feeling brighter Niki and lovely to hear from you Cathy. It seems for some that the base of the skull and the neck suffer. As the inner ear is positioned somewhere behind the head, I wonder, as things are getting 'better' it is the nerve impulses to the inner ear spluttering to life (one hopes) and causes more localised problems. I think so much sometimes what can cause all these different symptoms, you end up sounding like a crazy woman!!! Anyway, Jemma, I'm still seeing my VRT therapist. She gave my whole body a good going over last time as I too have all sorts of tight muscles, bits that don't move, bits that move too much and bits in places they shouldn't be!!!!! So I have stretching exercises to do for my posture, back and neck. As it has been suggested I do Pilates, I have invested in a big round pilates ball to help with my core muscles which are non-existent! Trying to balance on this flat on my belly not only has caused much hysteria as it is impossible, but must be giving my vestibular problems a run for their money. I sent a small gift and note to my employers saying that I couldn't see myself returning but appreciated their support. Today I received a Christmas card, gift token and a note to say they understood, but still hoped I may return sometime next year. How kind. So we will have to see. Quite a few months at least from being anywhere near confident or feeling OK to start work. Jemma, you will be fine at the meal with your parents. Go for it! At least you will know how you can cope with such situations. Do let us know how it goes. We must try and not let this thing beat us - remember, this too will pass! Thanks for the update on weather conditions Melissa and glad you are having better times at the moment. Trying to cheer myself up - as never been like this at this time of year. Have just done my Christmas cake - a bit late in the day, but I thought I must try. Also, have got a CD playing Christmas tunes in the kitchen to try and make me feel more Christmassy! Gary - great to hear from you. You sound like your neck is at the stage of mine and maybe is another set of symptoms. Anyway, Merry Christmas to you - hope your brother got back OK. Have a symptom free and truly enjoyable time - but do keep in touch when you can. Maria - great to hear from you to and hope you have much much better and healthier times. I'll post just before Christmas to wish everyone happiness. Love and hugs Gloria xx |
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Hi all- Feeling like my old self today. I am going to enjoy it while it lasts. I pray to god that I feel this good on Christmas. Gloria- I know what you mean about always thinking about where did this come from. What is making it linger? When will it go away for good? I am 100% convinced that my neck is the route to all of this evil. I pulled the muscle in my neck and have never been same. My physical therapist works on my neck. She always relieves all my symptoms. Keep with VRT. Love, Melissa |
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Gloria, I too also have the strange pressure at the base of the skull at the point where the spine meets the skull, if you look at an anatomy chart that is exactly where the inner ear is located within the skull. I found regular full body massage helps with these strange head and neck sensations. Here's a bit of an update with what's been happening in my world, the last two weeks I have had a stomach flu which has left me feeling very weak and achy, Im just starting to feel better in the last few days, good thing is it didn't affect my balance whatsoever, spoke to my GP he thinks my Im still off balance due to my sinuses so Im taking a sudafed everyday to see if it helps. All in all I feel I am conquering this thing and next year I will overcome it, stay positive everyone.... DC |
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DC - interesting - I have said a few times that I think my ongoing problems are due to my sinuses and the post nasal drip I suffer from. Maybe if I got rid of that I would recover completely. Oh well! Funny enough I had my last big relapse after stopping my anti histamines and it took months to get over that one. Needless to say I was back on the anti histamines quite quickly! I take them every day (benadryl) and use beconase nasal spray daily too along with a saline sinus wash spray but I still suffer from post nasal drip as the GP can still see it. Well I have done my big shop this morning - 2 hours in Asda - no problems. Only problem was at the till when I spilled a whole bottle of washing up liquid, covered the checkout along with me and some groceries. Yuk! No staff to help and no tissue or cloths to clean up. Great - you gotta laugh! Here's wishing you all a very merry christmas and I really sincerely hope that you all have a good dizzy free day. Love Sandie xx
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Hi all, DC - thanks for that reassuring piece of information. Whilst I am not pleased, but am pleased - if you know what I mean - that someone else recognises the same symptoms. I'm sorry that you have been so poorly with the flu - ghastly - as if you don't have enough to cope with! Is the back of the head neck thing fairly recent or have you had that all the time. You said that the flu hasn't caused you to feel dizzy. Have you been symptom free for a while now? Sandie - I feel for you with the washing up thing - I too, have done similar but with a large pot of single cream!! You don't forget those instances in a hurry. I was in Tesco & the look on the girls face as if I had done it on purpose. Anyway, hope you are feeling OK at the moment & it lasts - especially over Christmas - what are you doing? Are you doing all the running around and cooking? Normally, I would be doing all that - in the past there would be 15 of us. I'd moan like hell at the time & in the run-up to Christmas, but I love it really. Anyway, have fun! Melissa - are you up to date with your Christmas arrangements? Your kids must be so excited - I assume they still believe in Santa? Anyway, quick question - what VRT exercises do you do Melissa. It would be good to compare them to mine, although my therapist tends to change them every time I see her. I also have a balance pad which I have to stand on & close my eyes - soooo weird!! Sometimes I just manage it but mostly I fall over to my left which is my affected side. Good luck for your Xmas Eve dinner Jemma - I really do hope you feel OK enough to enjoy it. Just in case I get embroiled in all the Christmas festivities - I want to send the biggest of hugs to you all - Sandie, Jemma, Melissa, Maria, Gary, Cathy, Susanne, DC, Amanda, Niki and everyone else who has posted on pages 11 & 12 whilst I have been around. I pray & wish you all nothing but the merriest of Christmases and the best and happiest 2010. Thank you each and everyone of you for your wonderful support. Of course not forgetting Rich who set up this site and without which we would not be able to correspond - many thanks Rich & Happy Christmas to you & yours. Christmassy hugs Gloria xxx |
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Gloria, Im not completely symptom free, still have some minor balance issues, but no dizziness anymore, I have been gradually getting better since day 1 and Im now at my 12th month. The pressure at the base of my skull has been on and off, its not always noticeable. My only form of VRT is my very strict exercise regime, which is lots of hard calisthenics done daily as well as my Jiu Jitsu training, which involves lots of jumping and rolling around wrestling, it really tests my balance.. I started taking another 3000mgs of gingko daily again after taking two months off it to see how my body reacts, it generally takes a while to kick in, so I'll update everyone on that in the weeks to come.. Everyone have have a Merry Christmas and a Happy New Year... DC |
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Hi all- I am on my 7th day symptom free! I just am so nervous that this will all come back. I pray every day that this is it! I hope you all have a Merry Christmas and Happy New Year! Melissa |
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Hi everyone: just wanted to wish everyone a very merry and healthy Xmas. Let's hope the dizzies stay away until at least after New Year's! Melissa, hope the good days continue. Have a nice holiday everyone. Maria xxx |
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Hope everyone is having a nice xmas, I can't say mine has been great. I got through the meal out on xmas eve but it was a struggle and i could not stay longer than an hour and a half. I was really tired afterwards. I got up feeling exhausted on Xmas Day and just wanted to lie down. My boyfriend made the dinner which i managed to eat ok but then had to visit both sets of parents. It was really hard, felt really woozy and my ear was hurting inside for some reason. I am sure there is more fluid trapped in there. I could not really do much and was desperate to get home and lie down. I seem to have been more off balance and woozy this last week and it is very diheartening. I even had a cry on xmas day because i just wanted to feel ok and i felt worse than ever. Sorry to be so depressing. Hope everyone got through it better than me. I just hope that next year is better xx |
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Jemma, I am so sorry that you felt bad on Xmas of all days! I hate this thing! I hope that the new year brings us all better days. It is raining very hard here today. Whenever is rains I get off again. I will say that the off feeling is way less than it ever has been. I just get a swirly feeling in my head. Hard to describe. I'm sure you all get it though. Yesterday I was able with no problem to get up early with my kids, drive into NYC for a NY Knicks game (basketball team) and then come home and make a dinner for my whole family. I even had a small glass of wine! I was tired at the end of the day. I hope that this is gone altogether soon though. Happy New Year! Melissa |
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Hi all, Hope Christmas Day was enjoyable for you. Jemma I am so sorry you felt rotten - you do hope that we might have got some respite at Christmas - such a special time. Well, for me we did do such a mad thing & drive down to my family in Devon & back the same day (300 mile round trip - total of 6 hours in the car). I was glad to do it especially to see my very old uncle of 90 who isn't in good health at all. I just felt if I didn't see him, then I don't think I'll get another chance. So arrived at my cousin's house which was full of people. Her kitchen is a little smaller than mine & what with all the noise, people chattering and trying to help serve dinner - I went into a complete spin & really felt sick. I couldn't believe it - not on Christmas Day I thought, but labs has no respect for anyone or anything it seems! Didn't really enjoy dinner and afterwards people played a board game which was even more difficult. Anyway, got through the day, slept going home in the car & today have felt so rough. Really bad head sways and headache. So, with you on this one Jemma - just have to believe that we will improve by next Christmas, because this one has been the pits! Melissa - glad that you faired better and were able to enjoy a glass of wine. My neighbour on Christmas Eve offered me a glass of wine - I had a sip as I really felt it would be nice to enjoy just a small glass at this special time of year. Wham - one tiny sip went straight to my head and made me feel instantly more dizzy, so couldn't enjoy that either. Well, nothing doing tomorrow, so will have a complete rest - next event to try and get to will be New Years Eve with some friends. Oh I do hope to feel a bit brighter by then, but have been saying that for weeks now. Anyway, take care. Keep posting. Gloria xx |
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Melissa, Just seen your thumbnail picture of your lovely children. Taken yesterday I presume? Fabulous! Gloria |
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Melissa - so glad you are feeling good and hope it lasts forever! Jemma - so sorry for you but you must be proud of yourself for the fact that your actually made the effort to see your family! You did really well. It is very hard for people like us at this time of year when everyone is happy and you so want to join in but you can't. You must try and keep positive Jemma, it's half the battle if you can see that there is a light at the end of this very long tunnel and you will get there one day. Gloria, your story about your uncle strikes similarities with me when I first got this thing. My old Nanna who was 93 got really ill and had to go into a care home. I was in the first throes of this illness and could barely stand up and I couldn't go and see her at first. As I started getting better I used to force myself to go into the care home to see my beloved Nanna. I was very close to her whilst growing up and loved her dearly and all I wanted to do was be with her. I only managed it a few times and then she was taken to hospital where she died a couple of days after admission. I didn't get to see her in hospital and that affected me badly. At times you feel like it takes everything away from you but I still have my memories and I should be grateful for that. As for the wine - believe me - that gets better too - lol! I was like you at first - no alcohol crossed my lips - but now I can have a little drink and enjoy it! For me, this year, christmas has been really good. I got my monthlies on christmas eve (nice timing) and that knocked me a bit and I have been really soooooo tired but the dizzies have been minor and my balance has been ok. I did all the dinner by myself and then did a spread (for a lot of people) at tea time and coped wonderfully! Probably downed a bottle of wine as well with no after effects - yippee. Back on track for now but that's what it's like for me. Just waiting for my next relapse but fingers crossed it might never come. How did everyone else's christmas go? Sandie x |
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Hi everyone My xmas isn't getting much better. My ear was bleeding slightly yesterday which made me panic a bit. There is defnitely some fluid and stuff in there causing more problems. I never had any problem with my ears before all this! Glad you had a nice xams Sandie and even managed wine, good on you! Gloria I think you're in the same boat as me - we just aren't up to enjoying social events yet. I have been so tired as well. Maybe being at home all day makes me more more woozy than going to work...although i cant say i am looking forward to returning to work. At least the snow is melting. Balance problems and snow dont mix very well do they!! Has anyone tried using a Wii fit for VRT purposes? Thought about getting one but they are quite expensive. I read something about bilateral vestibular damage. That is where both sides are somewhat damaged so it is harder to compensate because both sides have been affected. I wondered if that is what i have because it is going on so long and you can get really bad fatigue with it. Has anyone else heard of this? Anyone, hope everyone else is ok, any plans for new years eve? xx |
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Merry (late) Christmas everyone! My holidays were decent.... didn't feel great but didn't feel terrible. I bet most of you have already seen this video (I found it on another dizzy message board), but if you haven't it's definitely worth a look. Not only does it make you feel like you're not crazy, it also illustrates someone doing VRT... and for someone like me who has limited access to VRT this was a good resource. http://www.nhs.uk/video/pages/medialibrary.aspx?Page=1&Filter=&Id=%7b7D156056-D344-496B-A773-7A459FD3B869%7d&Tag=Eyes%2c+ears%2c+nose%2c+teeth&Title=NHS+VIDEOS+%7c+Labyrinthitis%3a+Rebecca's+story&Uri=video%2f2009%2fAugust%2fPages%2fLabyrinthitis.aspx If that doesn't work go to http://www.nhs.uk/video/Pages/medialibrary.aspx?Tag=Eyes%2c+ears%2c+nose%2c+teeth scorll down and click on the labs video. |
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Gloria, Thank you for the compliments on my children. It is so nice to enjoy Christmas through their eyes! I have to say that I have now been symptom free for 9 days! I realized today that I started a new nasal spray 9 days ago. Coincidence? Not sure, but if it works, I will keep using it. It is called Veramyst. Not sure if they have it in the UK. It is a prescription. We are going away for a few days to an indoor waterpark. I sure hope I still am feeling well for this trip. I gave up coffee when this all happened to me. Now when I try to drink it, I get dizzy. Does anyone else have this problem with caffeine? Melissa |
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Hello to everyone. I used to post here a bit and have been reading again recently. I've had balance/dizzy problems since July 04, which has bad and better patches though never goes away completely. Took 3 years to get tested as a 40% defecit in balance function on the left side. Anyway, why I'm posting just now is to respond to Jemma's query about the Wii fit. I had a really bad patch this summer,was tripping up more than ever and very unbalanced, following a bad migraine. Spoke to a guy at my balance clinic, and he said the Wii balance board was being tested in London for balance patients. My lovely hubby bought one right away-we hadn't been sure if it was a good thing -and I have to say it's been terrific help for me. At first I did five minutes,then five minutes twice a day, and gradually built up to 30-40 minutes a day. I really enjoy it, and feel a massive benefit. Within about ten days I was walking much better, and have been less dizzy recently. My lads have PS2s and Xboxes which I could never watch let alone play. Having persevered with the Wii, which is very cartoon like rather than realistic, things have really improved. Some of the games really threw me at first but now, as long as I keep practicing, they're fine. From what I've heard not everyone finds it helpful, but honestly it's been the biggest step forward I've had in a long time. Sorry for the monster paragraph, I'm out of pracice at posting ! Very best wishes to everyone for the New Year, and thanks to Rich for keeping these posts going. Good man ! |
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I had Labyrinthitis starting in January of 08. Its almost January of 2010. I still have pretty bad brain fog, and VERY SLIGHT feelings of floating/vertigo. Not "room spinning" at all, just the floating sensation. The problem, for me, is that I still have no sense of direction, still have the same headache I had 2 years ago (stiff eyes, clogged sinuses, strong pressure behind my nose/forehead, band-like feeling around my head), still have cognitive problems, and still have some bad anxiety/depression. I'm taking as much time off as I need to combat this thing. I'm wondering... where should I start? I'm thinking of targeting the headache first, but I want your opinions of what I should do.. Thanks, John |
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John, Have you tried vestibular rehab therapy? It works great to get your brain to compensate. Also, make sure that nothing is wrong with your neck. Your posture is key to how you see the world. Have you been to an allergist? You may have allergies and need some kind of allergy medicine to help unclog your your nose. As I stated earlier, I started a nasal spray (VeraMyst) and have found it to relieve 100% of my symptoms. Keeping your nasal passages clear will keep your ears clear. Not everyone on here agrees with me, but I had a very hard time dealing with the anxiety and panic that this brought on. I decided, with much consideration, to start taking Zoloft (an SSRI). It has helped tremendously with the anxiety. Now if I have moments of fuzzy head, I do not panic. You have to be your own advocate in this battle. Keep pushing your doctors. If one doesn't listen or help you, switch doctors! I went through 3 GPs before I found the right match for me. Keep the faith! Melissa |
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Hi Jemma, You must get that ear seen to by your doctor, sounds like you have an infection going on there which of course makes you feel worse as regards the dizziness etc. The bilateral thing you are talking about is, I believe, quie rare and I'm sure you would not be able to walk at all if you had this. Jemma, the tiredness comes because your brain is working so much harder than a normal person's does just to keep you balanced. I do hope you feel better soon. I did use a Wii a couple of years back and yes I would say it is good for your balance as you can do lots of balance exercises, it's a load of fun too! I had to stop because my daughter kept kicking me out of her bedroom! I read an article once about them being used in hospitals for other things (can't remember what). Melissa - hope everything goes ok with the holiday break and that you still feel good. Hi Kim, welcome back, it's coming up to 5 years for me next March and I seem to be like you - real bad patches, which get better and better but never completely goes away. I have a relapse every six months or so which takes me a few months to get out of but at the moment I am not so bad. Hi John, maybe you should try and get your sinuses sorted out first as I swear that this is why I still have problems with dizziness and balance as I cannot get these sorted out! I take an antihistamine every single day of the year and I use a beconase nasal spray along with a saline nasal spray to clear out my sinuses. I don't suffer headaches as such but I do get horrible feelings in my head which usually seem to radiate from my nose/cheekbones. Apart from that I wish I could help but as I'm still floating about with this awful thing and hitting nearly 5 years I don't suppose I'm much use - LOL! I think the best advise might be plenty of walking and keep yourself healthy i.e. good food and don't overdo it. Take care Sandie x |
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Hi everyone and thanks for the replies about the Wii fit, definitely worth looking into by the sounds of it. Sandie - I am taking some antibiotics now in case my ear is infected. I have definitely had a set back over xmas and wonder if i have a cold or other virus or if this is just another part of this terrible labs journey. Did you ever come across anyone with bilateral damage Sandie? From what I have read you are probably right and I dont have this as my balance would be worse and it seems to say you get oscillopsia, ie bouncing vision with this. You just wonder about everything though don't you. Kim - sorry to hear you have been suffering so long, hope you have had some good periods in those 5 years. 40% loss sounds pretty bad. Did you have a diagnosis of labs and is that was caused the loss to be so severe? How do you cope with your life? Can you do normal things and work etc?? Maria - hope you had a nice xmas. I recall you said your caloric test showed a weakness in one ear, do you know what percentage loss you had? Also, did you hear of anyone having bilateral loss? John - another long sufferer - were you diagnosed with labs and have all the tests etc? Do you feel you have improved over time? It is hard to know what to do for the best isnt it but i think Sandie is right, keep exercising and doing what you can and consider VRT. Amanda - I have watched that labs VRT clip, it is interesting because you never see much about this at all. Glad your xmas was ok, did you go out anywhere? I ready an article on that Labs website in the Links section about the psychological impact of Vestibular Disorders, I cried as I read it because I identified with so much of what was said, here is the link... http://www.theblackriver.net/wobbler/wobblerpyschological.html Keep posting x |
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Hi all, Sandie, really pleased that you have had a good Christmas & felt OK - it is about time things started to properly settle down for you. Hi John - interested to read that you still have a problem with headache, tight band around the head feeling. I've had this for just over 6 months and get those symptoms too. I've always had the tight feeling and pressure in my head since this started. I am also a migraine sufferer & have been for many years, but these are not the same symptoms at all. Currently, I have been to see a neurologist who has put me on Amitriptyline. Whilst they are known to be an anti-depressant, he put me on them to try and break the cycle of the messages the brain receives from imbalance & all the nerve ending and muscles reacting too strongly. Sounds all a bit weird. I've been on 10mg for about a month now. May have helped a bit but still have tight band around head and headachey most days - although not as severe. The neuro wants me to up the dosage to 20mg. I did try just before Christmas but felt very dopey and I am sure more dizzy, so I went back down to 10mg. I am due to see him again at the beginning of Feb so we will see what next. Melissa is right too, to get your neck checked. Whilst it is not THE cause, but my neck muscles tighten and make everything worse. So I see a physio for that most weeks. I do VRT exercises which also help, except they can also make my neck worse because of the quick head turning you have to do. Chicken & egg situation - you're damned if you do & damned if you don't! For me the realisation is that clearly my balance mechanism has been badly affected. It is going to take time and the knock on effect is that it causes secondary issues like muscle, neck problems that actually hamper progress . So you have to treat those as well. Jemma - Sandie is right - sounds like an ear infection you have. Have you been to the doctors yet? Kim - the WII sounds a good idea and someone else suggested this on this site earlier. I have bought a special balance pad from my VRT physio. Certainly not as much fun as the WII but a good challenge and makes a good party piece to get all your friends to test their balance. Most cannot do the exercises which makes me think most people have poor balance. Melissa have a good break. John let us know what you decide to do and how you get on. Love, Gloria x |
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Hi everyone I did post yesterday but it seems to have gone astray so i will try and remember what i said. I have got some antibiotics for my ear in case of infection. It keeps collecting with fluid which i think is due to eustacian tube problems even if the ENTs dont agree. They still crack and make noises. How are your ears now Gloria? Sandie - i think you are right about bilateral damage. Have you come across anyone with it? I think you get oscillopsia, ie bouncing vision with this too. Maria - did your caloric test tell you what percentage loss you have? I recall you saying one ear was weaker than the other... Kim - thanks for the comments re Wii Fit, worth looking at then. 40% loss sounds bad, how do you cope? Have you improved over the years and do you work or do social things? Susanne - how was your xmas? Did you get your balance tests sorted? John - I think Sandie is right, the only thing to do is keep active and eat well. Have you had all the balance tests and is the diagnosis definitely labs? Amanda - glad you had a good xmas. Any improvement for you? Watched that clip, it is quite interesting to see the VRT being done. Keep posting everyone xx |
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Hi everyone, Well we all made it through Christmas with some better than others. My Christmas was actually pretty good considering all the family get togethers we had. I did have my moments of light headedness and fatigue but pushed through it. I think we have all become good actors pretending all is well. A few days before the holidays I felt tired and more lightheaded and was on the verge of tears much of the time. Whoever said that this messes with your head is absolutely right! The last few days I felt better and was motivated to be more physically active. Well yesterday I overdid it and am paying dearly for it. My muscles are sore and I'm so tired. I don't want to do a thing. When I get this way it feels like I have a bit of the flu. It's not just a sore muscle thing but a whole body thing. It's hard to explain. So today is a resting day and hopefully tomorrow will be better. Jemma, my balance tests might take a long time since they said a 4 month waiting list. Ridiculous! Take care everyone. |
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Susanne good to hear you faired quite well through the festivities. You are so right about being good actors - I try to put a brave face on all the time. Not that I want to be reminding myself and others all the time how I really do feel, but my husband thinks I am actually over it now because I do a good job of appearing to be OK - and of course my reply, when asked by him how I am, is that 'oh I'm fine'!!!!! I had to reply to your post though, because once again you and I seem to react very similarly. I have been socialising, going to friends and rushing around doing this and that over the Christmas, not just because I wanted to of course, but because I felt I must try and be normal and work through this thing rather than give in to it as well as for my husbands sake. We had a very late night (early hours of the morning) with friends yesterday, and today I feel horrible and so so achey all over, especially my shoulders and back. It is just like aching when you have flu, I agree. So, one night out too many. Next up is New Years Eve - so tomorrow day of rest. Take care Love Gloria x |
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Hi Jemma, no I don't think I have ever come across anyone with bilateral damage. It is not very common for both sides to be affected . If you do have a virus, which you most likely do, you will usually have an increase in your dizziness/balance problems. However, I have a cold at the moment and my throat is really sore but I haven't had any worsening of symptoms this time as it doesn't always happen that way, sometimes it actually leaves you alone - yeah! Gloria - you have hit the nail on the head with your balance board thing, even 'normal' people cannot do the balance exercises - so why do they bother making you walk heel-to-toe etc at the hospital when most people can't do them anyway?? Makes me laugh! Was in town shopping yesterday, queueing for refunds at M & S, a meal then cinema (again). St Trinian's this time, one VERY noisy film, but I did OK. I have been back into town again today after a hospital visit with my mum. Back in again at the weekend to see Avatar for my youngest daughter's birthday treat. Busy, busy week and coping well. You know you have to thank god for small mercies in that really although we have a life limiting condition, we do not have a life threatening condition. My niece who is only 21 had a stroke three days before christmas. She had taken me out for my birthday lunch the day before and was absolutely fine, it happened the next day. She is ok apart from her arm is still a bit numb but what a worry. Anyway, take care everyone. Sandie xx |
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Sandie, how terrible for your very young niece. I do hope she is doing well and nothing terrible is wrong. How did you fair in Avatar? Someone told me they heard it causes motion sickness in some people. Just wondering because my kids want to go see it and it is 3 hours long. Don't want to feel sick in there for 3 hrs! I made it for 3 days at the waterpark not one symptom. I was tired by the end of the day, but that is all! YEAH!! I have now been 14 days symptom free. I want so badly to believe this is it for me, but I know that this labs is an ugly monster that rears it's ugly head at any time. Jemma, did the antibiotic help at all? Have you taken any antihistamines? Yes, the labs is the labs, but because of the labs we all hold our heads and necks very rigid as not to bring on dizziness. Therefore, we all have tight necks and tight neck muscles, that is awful for your vestibular system. Gloria, keep icing your neck when it feels sore and when you have headaches. It works great! Happy New Year everyone! I do hope that 2010 brings us all peace and no more symptoms!!!!! Melissa |
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Hi everyone, Sandie really glad you are busy busy and still feeling ok. Let this be the end of all this dizzy nonsense for you. I am so sorry to hear about your niece. Do you think there is anything genetic that could cause this at her age? Hopefully, as it is quite unusual, the doctors will pursue it and find a cause. How worrying for you all. You are so right Sandie, it is when you hear things like that, it makes you feel quite humble to think we do not have these life threatening conditions. Nonetheless, as you well know, this does make you feel so so unwell. The last couple of days have been fairly reasonable for me. Less dizzy, but still feel not right in the head - if you know what I mean!! Jemma - how are you doing? I have thought about you over the Christmas period as you have sounded so so down and not surprising. My ear is still giving me symptoms, although not as bad. I still get the fullness, ear ache and popping. Overall, I have faired better than I thought I would over Christmas, but there is now a sense of anti-climax knowing the festivities are over bar the shouting and back to normality and the realisation that labs is still with me. I will give a big cheer at midnight tonight and hope and pray 2010 will be the best year ever for all of us and that we see an end to all this head stuff! (Melissa - another lovely pic - who is it?) I wish you all a very Happy, HEALTHY, and prosperous New Year. Love, Gloria xx |
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Hi everyone I am still not feeling great. My ear is a bit better but still not right - I wonder if I have a bit of flu or a virus or something because I have been so so tired. I personally wouldn't take antihistamines ever again Melissa because I think that is what may have caused or contributed to me getting labs in the first place. I think I had an adverse reaction to medication, which it does say on wiki can cause labs. Gloria - glad you had a good xmas and I like the picture, was that taken at your meal out the other week? I have a funny feeling in my head, like a fuzzy horrible feeling and my brain feels confused sometimes, so weird. Anyway I hope everyone has a nice new years eve and I wish everyone a healthy and labs free new year in 2010! love Jemma x |
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Hi Melissa I haven't actually been to see Avatar yet. I'm going this weekend. Mmmm, I'm taking my daughter and son and they want to watch the 3D version, so don't really know how I am going to fair with that, but I'll give it a go. I might just have to sit with my eyes shut all the way through!! Fingers crossed for you Melissa that this is the end of your journey with Labs! Gloria - I have been wondering about the genetic thing. They are saying it was caused by her using the pill. She is my brother's daughter and I also have had problems with the pill and can't use it. My problems were with my legs and I ended up with a varicose vein because of it. I only actually took it for a year and then tried the mini pill after my son was born and had the same problems. Anyway, hopefully she will be ok though she still has numbness in her arm and hand. Today, I have been slightly off. My throat is so sore and I have slight ear pain. My balance has been going a bit but just for a second or two. But, I have been shopping at a few of the out of town retail parks today buying a lap top for our daughter. She saw one in Comet, it was out of stock (apart from the display model), and it was like 'I neeeeeeeed that one', you know the story! But, we did manage to get it for her eventually! So, the end of another year - wishing you all a very Happy New Year - I'll probably be in bed snoring my head off but for those of you who are doing anything nice I sincerely hope you feel good. Sandie xx |
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Gloria-ha ha ha, that is me and my best friend Tricia on our prom day. May 1989! Yes almost 21 years ago. I am the one is blue. I found it and scanned it into my computer. Thought it would be funny to use as a profile pic on Facebook. Today I am a wee bit off. Just a little bit swirly in the head. I am due for my period any day now, labs seems to rear it's ugly head around that time of the month for me. Hopefully, it won't be as bad as it has been in the past. Jemma, right before I got labs, literally two weeks, I had pulled a muscle in my neck. My doctor prescribed 1000mgs of naproxen (prescription strength Aleve) twice a day and Flexirill (muscle relaxant). It does say on Wiki that medications, especially aspirin products, can cause labyrinthitis. I often have wondered it that contributed to my demise. I am not too sure that an antihistamine would cause it though. Have you done any research on it? They may really benefit you. Maybe even just a nasal spray. Sandie, I do hope that your neice fairs well after stopping the pill. I took the pill in my twenties with no problems. Then in my thirties, I could not tolerate it. Made me so sick and cranky. I hope that this cold does not knock you down. Have a Happy New Year everyone! Thanks for listening to my ranting on here. It is a Godsend! Melissa |
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Just to reply to your comment Melissa, I do think some drugs may cause labs. I have read erythromycin antibiotics can cause vestibular disorders and i have had a few courses of that in the last year. Also I had a two or three antihistamines over the weeks leading up to this in march and april and felt weird but didnt think much of it as each time it seemed to pass. Over the easter weekend i felt off like a cold or something and my hayfever was quite bad so on the tuesday after Easter i took another antihistamine and then the next day felt really off balance and tired. I tried to carry on working etc but things got worse and worse over that week until i was suffering extreme anxiety symptoms and had to stop work. I was really off balance and have never been right since. My mouth at the time was suddenly so dry and my tongue was coated white. This took about 3 months to resolve and i read that the side effects of antihistamines can be anxiety, dry mouth etc etc so was convinced i had a bad reaction. Also since then i have never had any symptoms of hayfever all summer which is very odd as i normally suffer all summer with hayfever and had been this year up to the point this all happened! I agree that it seems unlikely that antihistamines could cause labs but i will never take one again, it isnt worth the risk for me. I have noticed that other people on here have mentioned their symptoms started after taking medications so i think that could be a possibility. Doctors will never admit it though! HAPPY NEW YEAR EVERYONE X |
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Happy New Years everyone! I am definitely hoping to leave the worst of this behind in 2010. For all you Brits - I'm a Yank who has somehow become a Dr. Who nut... I am super excited to see the New Years Day special when I can get it over here. Something I discovered today - I have been taking Ginko regularly for the last 2 months. Since I have been on break the last 2 weeks my schedule is messed up and I haven't taken my vitamins regularly. The other day I got a terrible headache and couldn't figure out why. Today I got another one and realized the common denominator was that I didn't take my ginko both days. I guess it really does affect the blood flow in the head. Melissa, you mentioned icing your neck. I have been doing this because it stays stiff and sore all the time. Does anyone else notice that the dizziness is terrible after icing your neck? I was thinking this is probably because compensation requires your muscular system to take over more in the balance process.... and so numbing those muscles makes things even harder. Anyone else notice that? |
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Jemma, If I were you, I would never take another antihistamine either. I myself, will never take Aleve or Naproxen or Flexirill again! I will never lift a weight or anything over my head again! Amanda-For some reason ice really helps to stop any dizziness and headaches I get from this. I tried a heating pad and it made me so dizzy! By the way, what is Dr. Who? Melissa [You know what "Star Trek" is? Well, "Doctor Who" has an equivalent place in modern British culture. It's currently one of the most popular British tv shows, and it's been running on and off since 1963. It's about an alien "Time Lord", known only as "the Doctor", who travels through time and space righting wrongs, usually with a mixture of fierce intelligence, humour, and a fair bit of bumbling. Every few years he's mortally injured by a particularly horrible foe and "regenerates" into a new incarnation played by a new actor. Tonight the Ten Doctor regenerates into the Eleventh Doctor - Rich] |
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Hehe... very nice explanation Rich. I'm not sure how I feel about the new doctor being younger than me (even if it is only by a year), but I'm willing to give him a chance. Can't wait to see who knocks four times! |
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Rich Thanks for the explanation. I have never heard of the show. They should have Dr. Who save all with Labyrinthitis! Gloria- Talk about lovely profile pics. You look great in yours! Funny how on the outside we all look like the picture of health...but on the inside we feel quite the opposite. Yesterday I had a headache and a little bit of a swirly head. Today I feel fine. No symptoms at all! Please God in Heaven, make this the end. Amen Melissa |
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Well, 2010 finally here - again, a very Happy New Year to everyone. I don't know what I was expecting. A miracle to occur on the 31st Dec as if a line would be drawn under the terrible year of 2009 and that I would wake up on 1st Jan 2010 and would be back to normal . Ha Ha Ha! Celebrated the New Year with friends and felt reasonable then yesterday have got a wretched sore throat feel really off, dizzy and sick. So, no respite just yet! Thank you for your comments on the piccy! It was taken at my hubby's birthday party just before Christmas. So many comment on how well you look, don't they? Melissa - I did think that was you in the blue!! I had a similar dress for a party I went to at that time as well! Where did those years go?!! Jemma - how are you doing? Are you feeling better? If you had a cold/virus too, then I now understand how it sets you back. Anyway, I'm back to bed I think. Take care. Love Gloria xx |
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Gloria - sorry you are feeling bad again. I have been so so tired all xmas and here it is over and back to work tomorrow, which i am dreading. Especially with all the ice to contend with! I keep getting hit with this awful drowsy fatigue and I can hardly get up in the morning, I dont know how I am gonna cope next week. I dont know if I have had a bug or if this is just part of labs. My ear has been very clicky and snappy but this seems to be a permanent thing now. I have managed a few busier restaurants with my boyfriend this week without feeling like I'm going to collapse so I am trying to see that as progress but it is day by day with this. I, like you Gloria, did hope to wake up on 1st Jan 2010 and not to feel dizzy anymore. I have to say I did not feel too terrible new years day and was grateful for that! This is such a long haul, even people with terrible things seem to get over them much quicker. We just have to keep hoping it will get better this year. I have my neurology apt this week so will be interesting to see what happens although I am not holding my breath for any answers. Hope you feel better soon Gloria xx |
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Hello Everyone Thought I'd just call in and say Hi. Sandie and Maria! Yip I'm ok. Still in one bit I'm pleased to say. I hope you had a fab Xmas and New year? Mine was fairly uneventful ( No squabbling with women in Asda this year :) Well I guess as far as labs is concerned I'm more or less off the hook. I have been left with myokymia but it's very slight and I hardly notice it. No dizzy stuff, headaches, anxiety etc etc etc... So I feel pretty damn lucky. Don't give up everyone. I promise you can still get rid of this bl**dy awful thing no matter how long you've had it. Anyway I'm supposed to be making dinner but I've been up here sciving with a glass of vino. Sandie and Maria let me know how you girls are doing! Lots of love KatieXxx |
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Hello again. Hope everyone is doing okay, though it sounds like some people are having a rough patch. Boo hiss. Jemma, Yes I have a job, clerical/reception in a busy hospital unit, four mornings. I'm pretty wiped out at the end of a shift, but the people there are really good to work with. I've had a few long spells of sick leave over the years unfortunately, but am doing okay at present. My dizzy/balance problems are very up and down and unpredictable, which is hard, as you will know. One spell in particular with constant dizziness was really depressing and I had to work hard to get back from that. I couldn't think straight and had trouble following a conversation, but persisted in going into shops and going for walks and the like. Some books from the library helped, like " Feel the Fear and do it Anyway," by Susan Jeffers. Took a long time to read with rubbish concentration. Things picked up after a while. I'm not wildly sociable and don't like noisy, busy places, but enjoy being outdoors, and going for meals, which I know some people find hard. Sometimes over the years I've had really good spells, and have flown to Canada and Australia with few problems. Then something will set me way back, maybe a bug or migraine, and wham ! down the slippery slope again. Snakes and ladders. Pretty gutting, though the last couple of times I've managed to be more philosophical and think things have improved before so they will again. Really wish I had more stamina. Sandie, hope you enjoyed Avatar. We saw a 3D version last week which was terrific. It was the first visit to the cinema in ages, really enjoyable. Katie, thanks for writing that things are good for you now. That's really nice to know. Best wishes to all. |
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Hi all, Great to hear from you Katie and Kim. When I first started on this site, I did go back to read your posts. I am so so pleased that you are both doing great and continue to give people like me and others hope with this. Especially, today as I really feel unwell. I am quite sure I have a virus. The sore throat has died down a bit, but feel so weak and dizzy. I think I will get that book Kim. Sounds like an adage I read years ago which was if you confront a fear or something you are uncomfortable with every day, you will feel like you can deal with anything - and I assume that is the theory of this book. Also interesting to hear that you have also flown. Not that I have any plans like that yet, but do wonder if flying affects you once you have/had labs. Jemma - thank you for your wishes and hope you get on OK with the neurologist. It will be interesting to see what they have to say. Here's hoping for better days. Love, Gloria xx |
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Hi everyone, Happy New Year to you all. Jemma, sorry that you still feel so bad but you have made a small improvement so that's good - small steps forward! Katie - hello to you! So glad you are over all this c*** and lovely of you to drop in and let us know how you are! How did hogmanay go for you. My daughter went back up to Edinburgh the day before NYE as she didn't fancy spending it with us (nowt going on!). I spoke to her on NYE but haven't heard from her since - wondering if she's over it yet -lol! Anyway, hope things stay good for you - lucky thing you! Kim - I seem to be the same as you - good for a while (but never 100%), then back down that slippery slope again. Haven't been to see Avatar yet, the weather has kept us in. We have quite a lot of snow in the north east of england and the roads have not been gritted at all. Our car got stuck on the main road a few days ago and the entrance to our estate is a bit of a slope. Jeez, we have a brand new Volvo with all this anti skid stuff and does it work - NO! So anyway we have been kind of sticking about the house and not going out unless necessary. I haven't been too well anyway, this cold and sore throat is still hanging on and I think I have had a touch of flu as I have had aches and pains even though I had the flu jab! We were supposed to be going yesterday but I cancelled that because I didn't feel up to it. It's my daughter's birthday tomorrow so I said I would take her after school but the temperatures are dropping so much I don't really want to risk it - with no grit the roads are lethal. My husband and my son have both fallen down and really hurt themselves. My daughter's school is closed today so if it is still closed tomorrow I might take her through the day before the big night freeze sets in. Oh, and I won't be seeing the 3D version as Melissa said it causes motion sickness and I have heard other people say it too so I'll just stick to 2D, thank you - lol! Good news, I suppose, this virus I have, which has been quite a heavy one - my throat has been so sore and my nose will not stop running - has not increased my symptoms too much. I am having slight imbalance but it is bearable. Gloria, that is a nice photo of you and your hubby. You do look well but don't we all? Take care Sandie x |
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Hi all- Feeling a slight bit off today. It is that time of the month though. I'm trying to look at it as just another symptom of PMS now. LOL It is so hard to have even the slightest amount of symptoms, because right away I think, oh my God, please don't let this return. I'm sure that I will get back to where I was, as soon as my time of the month is over. Gloria-I hope you are feeling better. I live in dread of getting a cold. I wash my hands so many times a day now. Jemma-I hope your appointment with the neurologist goes well. I was on the fence about whether or not I should go see a neurologist. Let me know what he/she says. Keep the Faith! Melissa |
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Hi all, Melissa - thanks for your wishes. I still have a sore throat and very achey but no cold. I think the glands in my neck are up too as all the muscles in the base of my head & neck are so painful again. Hope that you are feeling a little brighter today. You are so right - I wash my hands all the time, disinfect everything daily, but maybe I've been a bit too precious about keeping things too clean because here I am having picked up something! My husband has gone to buy me a belated Christmas present - a Wii Fit with the balance board. We are having to buy the console as well as we didn't even have that. A bit costly, but I think even he is prepared to go to any lengths to make sure I get rid of this thing! I said he can use it too - to help get rid of a little Christmas excess!!! As this calculates your BMI, weight etc - I think he is a bit scared, having convinced everyone he is fit just as he was 20 or so years ago LOL!!!! The male ego!! Anyway, on Kim's report, I'll see how it goes. It looks fun anyway. Jemma - have you been able to return to work - the weather in your area seems awful & you too Sandie? Let us know how you are. Keeping the faith - this too shall pass! Love & hugs, Gloria xx |
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Hi everyone kim you sound similar to me in that you are working part time but so tired afterwards. I just have to lie down for the evening once I get home from work. I do hope I will get some good patches where I feel like travelling. My boyfriend has hinted he wants a holiday this year but I have said I cannot commit to anything right now. Gloria - sorry you are feeling rough. I am still tired but dizziness is no worse. My boyfriend has a bad sore throat so I am just waiting to catch that now, great!! Let me know how the wii fit goes, I am toying with the idea of investing in one. We are two feet deep in snow here in the north west. I went to work yesterday and coped but haven't made it to work today as we can hardly move our cars and it is too dangerous to drive. I am also concerned my neurology apt tomorrow will be cancelled due to the weather although I think it is starting to head south soon. Hope everyone else is ok xx |
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Of course I ended up with a small stomach bug last night. Right away the swirly head, rubbery legs and walking on a funhouse floor feelings all came back. Not as bad as before, but still they make me anxious, as they remind of a rotten time not so long ago. Today I woke up and it was all I could do to get the kids off to school. I went right back to bed. I am trying to have some tea and a light breakfast. Think I am going to go back to bed. That always reminds me of this summer when I was so sick with Labs. I just have to remind myself that the worst is behind me. (I pray) I can't believe that this damn labs could keep rearing it's ugly head! It is hell!!! Jemma I hope you can get to your appt tomorrow. Where in the North West are you? I live in the North East of the US. Gloria, let us know how wii fit is. We have a wii, maybe investing in a wii fit would help us all. Melissa |
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Melissa - you poor thing - I am so sorry. Isn't this thing the pits! I couldn't believe it last Saturday when I woke up with a sore throat and the worst dizzies since a few months ago. The last couple of days have been like you - return of the old symptoms. I don't know if it is because we recognise them and therefore think they aren't so bad and panic less or whether, indeed, they are less severe. Whatever, I HATE IT! Even though we all know it can come back (if indeed it ever went away), if having a few good days or longish symptom free spells, it is such a wicked thing to know it really hasn't gone away. How many times do you have to have these relapses before it really does get better? Now that seems to be the million dollar question!! Anyway, wish you speedy recovery back to better times. Jemma - this weather is horrendous. You are right - we here in the south of England are in for it tonight. I do hope you will be able to get to your appointment with the neuro. Is it far from you? I understand about not being able to commit to thinking about holidays just yet. Me, too. I do so want a break - maybe we will have a short break in March/April but just down to Cornwall which is lovely even if the weather isn't so good. Cannot even think about going abroad - flying scares the hell out of me to think it may make me worse. At this moment, Andy my hubby is sitting amidst instruction booklets, cables and boxes of equipment!!! Think he will be there in the morning. Good job he is working from home tomorrow because of the weather - he will need the time to sort out how to work this thing LOL!!!! Hope we all feel a bit better tomorrow. Love, Gloria xx |
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Hi everyone, I was diagnosed with Labs last Jan and its quite interesting to read other peoples stories about this condition, it was the scariest thing I ever experienced, the symptoms lasted a couple of weeks and gradually eased off but reoccured again 6 weeks later. I discribed the symptoms to my doctor as a feeling of drunkiness without the alcohol - like walking on marshmallows and my eyes spinning around in my head like a slot machine which I no control over. I remember opening my eyes in the middle of the night and feeling very dizzy but when I got up the next morning I fell into the wardrobe its quite funny now looking back - don't have any idea how I managed with my 3 children because I couldn't drive and had to feel my way along walls and radiators. In the last few days I have begun to feel dizzy again and am dreading what's coming next, I am sitting in work just now feeling very nauseous, I have made an appointment to see my GP on Friday afternoon. I like everyone else am really glad I am not alone with these symptoms, I have had ear promlems from childhood but never felt any kind of dizziness before, Im just wondering now if this is going to be an ongoing thing for me !! Can anyone tell me what the down is with car insurance?? will they cover for this type of thing - do I declare this in advance etc .. Thanks a mil, Sandra D |
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Hi Gloria, I was lucky, two teenage lads in the house to set up my Wii, otherwise I'd probably still be working it out ! Do hope you'll enjoy it and find it of benefit. Tell Andy my husband loves the Mario carting on Wii and has a wireless link to play with workmates. Lots of swearing when they race ! Sorry to hear you and Mellissa feel bad again, that's so horrible. Hopefully things will improve soon. |
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Hi all Well I saw the neurologist and it was a lot more helpful than the useless ENTs. He basically said what we all know - the tests are not accurate. The caloric test only tests 20% of the balance mechanism and he said you have to go off the symptoms. He said in my case the symptoms all suggest a vestibular problem from the ears and not anything neurological. He basically said he is fed up with ENTs not doing their job properly and sending everyone to neurologists for inner ear problems! He spent over half an hour with me and I cam away feeling happy that someone has finally confirmed what I have been thinking and not just sent me away saying it is nothing! He is going to ask my GP to refer me to VRT but he is not sure how quickly or how local this will be. Melissa - I live in Cheshire about 30 mins drive from Manchester (which is where my apt today was). He basically said I probably had a virus and it may have affected both ears in my case. He said he thinks I will get back to normal but it will take time and he said people who damage their balance mechanisms when they injure their head can take 12 to 18 months to recover so it is likely to be a similar time for this although obviously nobody knows for sure. I still have a lot of snapping and crunching in my left ear which nobody seems able to explain properly and it does feel horrible. All in all the neurologist was a lot better than the ENTs but as we all know there is no quick fix for this disorder. Another thing I forgot to ask him about was visual migraines. For the last 7 years or so I have had roughly one a year but since this happened I have had three. I dont think it is the cause of the ear problem but it is weird. Out of the blue your vision goes all shimmery and everything is very bright and jagged and you get a blind spot in your vision so you cant see properly. It usually lasts about half an hour and leaves you tired with a mild headache afterwards. Has anyone else had anything like this? Take care all x |
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Jemma-Finally good news!! I feel so happy for you! It also gives me some relief to know that it takes 12-18 months to get over the labs from a head injury. I hope that this has given you some peace of mind. It feels great to finally be validated. The ENTs really should get to know labs a bit better, don't you think? Get yourself into VRT ASAP! It has helped me tremendously. Been slightly off last three days. Got my period and ate something bad, which gave me food poisoning. So I went to bed at 9 and slept until 7 this morning. I feel better, not as swirly headed, but I know by this evening it could hit again. Sandie D - I know that Labs can recur if you are sick. It shouldn't be as bad as last time. We will get through this! We will get through this! |
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Hi Gemma, the Migraine you are describing is called a Classical Visionary Migraine and I have suffered from these for the last 20 years, I'm sorry to say they are still with me andits very difficult to explain them to anyone else. Th first time it happened to me I ran out of my office in a panic because I though I was going blind, Some say they are hormone related but again they tell you that anyway - the headaches after the vision is restored are just awful. I've never actually spoken to anyone else suffering from this type of Migraine, hopefully your's won't last as long as mine have. Poor you. Sandra D x |
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Hi all, Jemma - am SO SO pleased that you managed to get to your appointment. The weather is really bad - we have had horrendous snow last night and all today. This is quite unusual because although we live just outside London, it doesn't really get that much snow like in the north of the country or the south west and of course where you live. Anyway, doesn't it make you feel better to have what I call proper answers. OK - it might go on for a long while, but at least you have some guidance and benchmarks. As for your migraine symptoms. Well, I have had migraines all my life starting from the age of about 6 or 7 when they were stomach migraine (stomach sickness). Progressed to bad, one-sided headaches - really painful just before and after my periods. This was pretty much the pattern until I reached my late 40's - then I started to get this what they call 'aura' just as you describe. Blind spot, jagged edged blurry light which lasted for about 10-12 minutes. This was then shortly followed by my migraines head pain. I have special tablets from my doctor especially for migraines. They are called Zomig and are one of the triptan family which is special migraine medication. This was because over the counter pain medication didn't do anything for the pain any more. The jagged edge thing lasted on and off for a couple of years but haven't had that so much lately - only the migraines. Although, they haven't been so much since having this labs thing. My migraines can last up to 3 days and I get about one every 2 weeks. Isn't life just wonderful!!!!!!!! We have got the Wii up and running. Probably because it is new - it is addictive and really good fun. The balance games - like slalom skiing, wake-boarding are brilliant. The only thing is I think I have overdone it and feel really bad today - and of course, have developed a migraine!!! Andy has got hooked on the golf games. He is really good at it - quite unlike his games in real life - but I haven't told him that LOL!!!! So thanks for the encouragement to get one Kim - you should be on commission!! Sandra - good to hear from you and Melissa - glad you are feeling a little better, but I know what you mean - you don't get your hopes up too high do you?!! But what can we do - sink or swim and as hard as it is sometimes - we have no option but to swim. Plus thank goodness we have each other on this site - you are all my saviours. Jemma - let us know about your VRT - I still do mine although sometimes I wonder if it has made any difference. I know it does help, but it is something you have to continue and not give up. The brain can take a while to learn to re-adjust and compensate - I think we all realise that!!! Melissa - you're right - we will get through this we will, we will, we will AMEN! Love and hugs, Gloria xx
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I am so dizzy tonight, I had to take antivert! I haven't taken it since late July. I went to my son's basketball game tonight and I felt sick. I had three wonderful weeks without symptoms. It just proves that this awful labs is not linear. Just when you think you are in the clear, BAM! I just hope the recovery is better. Melissa |
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Sorry your feeling rotten again Melissa. This thing just never seems to resolve does it! I have been really dizzy today too. It is scary because you always fear you're going to get worse and you can never switch off from it... You are right about feeling validated when someone finally agrees with you and tells you what is wrong, even though there is no magic cure, it is a relief because i felt like they thought i was exaggerating or something. Gloria - your Wii Fit sounds fun. Hope it helps. Are you still having your VRT? The migraine thing is interesting. The first time I had one I was working in catering doing a summer job between uni years and I did not know what it was but I carried on without saying anything to anyone even though I could hardly see the customers. I never went to my doctors about it because I did not think it was too serious and i hate going to doctors anyway. I am not the kind of person who goes to the doctors with everything which is why this whole things with doctors has so annoyed me because they just haven't taken me seriously enough and to me this is the worst thing i have ever experienced in my life. I just hope they don't become too regular. Feeling tired now - back at work but isnt this weather crazy! It was -17 where i live last night! How is everyone else doing? Jemma x |
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Gloria - Your post from a few days ago describes this disease exactly when you said how many more times do we have relapses till this thing is finally gone. I'm always cautiously optimistic when feeling better since you never know when the next setback will come. I must say I've been feeling quite a lot better the last week or so. Although I had a short set back on Sunday when lifting some light weights. I felt weak and nauseous and wiped. Last week when we were taking down the Christmas decorations my husband was winding his way around the tree taking the lights off the tree. He said he was getting dizzy and nauseous when I told him that is what lab feels like. He admitted it didn't feel good. Jemma - So glad the neurologist gave you some valid information that you can understand and work with. Wow, he actually spent half an hour with you. My daughter has a wii sport. Will that help at all with the balance. Wii sport doesn't use a balance board but we can play tennis, bowling, golf, boxing, baseball. Talk to you all soon. |
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Susanne - good to hear from you and really pleased that you have had a good few days. Oh boy does this thing test your patience. Like Melissa, have really had a bad setback. Went out today - despite the weather - I somehow feel better in open spaces than indoors. Really bad dizziness and overwhelming nausea. Haven't felt that bad for 3 months or so. Not that you would wish this on anyone else, but my husband felt dizzy and sick when he was playing one of the balance games on our Wii - so like your hubby, they realise how we actually feel - like that most of the time not just an instant. Although the balance board games are good on Wii and great fun - I think any of the games you play where you are concentrating but having to keep balance is good - especially the fast ones like tennis and baseball. Cannot believe the temperature where you are Jemma! -17, I thought we were bad at -5 last night. Maybe the cold weather has something to do with feeling more 'off'? I also wondered if the brightness of all the snow was causing my symptoms to be worse. To add to our woes - my hubby has just had a phone call to say his 83 year old mum has just been taken to hospital as she slipped on the ice & has either broken or dislocated some bones. Has to have an operation tonight to re-set them. We told her not to venture out in this weather - she may be 83 but oh boy so stubborn! Melissa - hope you are feeling brighter too! Love Gloria x |
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Gloria - sorry to hear about your mum in law, hope she is ok. This weather really is hard going, especially for us dizzies and the elderley who in some ways probably have lost some of their vestibular balance functions too. All my good wishes to her. It is -13 already tonight! Electric blanket on! Susanne - glad you have felt a bit better. You deserve it! Today and yesterday i have been using a balance board and it really does make me feel bad, maybe why i felt more dizzy today. It is a simple thing just to balance on but when i get off my eyes feel blurry and i feel really dizzy and a bit queasy and my muscles are a bit trembly. I wondered if this is good VRT and is helping me or if I should stop because it makes me feel worse. What does everyone think? xx |
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Hello there. Jemma, my rehab chappie said the vestibular system needs "stretching" daily to improve. This means doing things that make you a bit uncomfortable, but not overdoing it so that you feel more ill. It's a hard one to judge, I find, as I'm never sure if the extra exercises are making me feel worse or if it's just a bad day/ couple of hours. Sometimes I can tell by a certain feeling in my head that I need to stop doing something. Glad to hear your neurologist knew what he was talking about. It makes such a difference. Before I got tested, a couple of consultants said to me, " It's probably nothing. " Err, hello ? I wouldn't be asking for help if I didn't have a problem. It's not how I get my kicks ! Gloria, sorry to hear about your mother in law. We ask our elderly neighbour if she needs any shopping. She'll say she's got everything, then you see her wading through the snow with shopping bags. An independant streak a mile wide. Glad you like the Wii. It sounds like Andy overdid it a bit ! I find if I go on the tilt table more than once it makes the floor move for a while after, which is a shame,as I really like it. Will keep working on that. My working week ended today, which is a good thing, I could really do with sleeping until Monday. ( Won't really, it'll only make me dizzy.) It's been very busy as some people couldn't make it in because of snow. We live near a main road so once we got on that it was reasonable. All the nest to everyone. |
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Yes, that should have read, all the best to everyone. Well spotted ! |
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Gloria- So sorry about your Mother-in-Law. I do hope the operation and recovery go well for her. My Mother-in-Law nearly blew away the other day. She lives in an apartment between the bay and the ocean. So it is always very cold and windy. She had to flag a car down for a ride back to her apt. She is 81 years old! Well, I have come to a new low. Today I actually cried at physical therapy. When describing my dizziness and how I had to take anti vert again, I broke down into tears! God this thing just plain SUCKS!!!! She thinks it could be hormonal, because it seems to be hitting at that time of the month. She suggested I go see my gyno. Ha, I called the gyno's office and guess what? She no longer is with the practice. I actually hung up and cried again. Did I say this thing SUCKS yet? I contacted a nutritionist. Thinking maybe my diet is making this worse around that time. You know how they say salt intake can make you retain water even in your ears? Well she had nothing to say. Had no idea why the labs would resurface as she put it during my period. Dah! I wish to god someone out there would just specialize in this disorder. By the way, there is such a thing as migraine associated vertigo. It is a type of vertigo that is really a headache. Only you don't have pain, just vertigo. You migraine sufferers may want to look into it. Google has become my best friend. My husband even jokes and says I got my medical degree off the internet! He calls it IU like Internet University. At least I have learned more about this that most of the Dr.s I have seen with a real medical degree. Okay, enough of my ranting. Pity party is over! Tomorrow is a new day and I will be damned if I let this get the best of me! I'm keeping the faith. Melissa |
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Melissa - am so with you on this. I am going through a bad patch again. My physio who I saw today said it does take a long time for the brain to compensate. If we get a mild or severe virus, pull a muscle or have hormone fluctuations apparently all affect this condition because the balance, eyes and muscles are not working in tandem - not until the brain totally compensates. Back to the patience and time thing again. Melissa, I am so sorry you feel so down to the point where you can't stop crying. It does get to you like that. You try and be strong all the time and it just doesn't work. We are all only human and can only take so much. How you cope with having a young family as well - I do so admire you. It would be nice just to see real progression all the time with this and not for a while for it to revert again - so unfair. Already discussed the migraine vertigo thing with the neuro. My symptoms do not go with that despite the fact I am a migraine sufferer. My friend sent me a lovely set of photos with 45 lessons of life. I'm not into a lot of slushy sentiment, but I do have to say a few of the adages were quite pertinent - so I'll list them and hope they may give some comfort. 1) Whatever doesn't kill you really makes you stronger. 2) Frame every so called disaster with these words - in 5 years time will this matter? 3) Time heals almost everything - give time, time. 4) However bad a situation is - it will change. 5) Believe in miracles. 6) If we threw our problems in a pile and saw everyone elses - we'd grab ours back. 7) No matter how you feel - get up, dress up, and show up. 8) The best is yet to come! So - we will get over this, this too shall pass and we will become stronger - it may take a little while but we will get there! Thank you for your concerns over my mum-in-law. Not long back from the hospital. She had to have a couple of pins put into her ankle to hold the bones together and has her leg in plaster to her knee. This will be a long haul as broken bones are for anyone of her age. So will be in hospital for a good couple of weeks - at least she can't get up to any more mischief! Love to everyone Gloria xx
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Gloria-Thank you so much for the words of encouragement. I enjoyed all the adahes you shared. I may have to print them up and put them on my fridge. Today I was much better. Only proving that the hormone fluctuation is my number one enemy. Now I have to figure out how to solve it. What can I do to help eleviate some of the symptoms that I get during my monthlies, as you Brits call it. LOL Does anyone out there have suggestions? I was not at all weepy today. I guess because I can see that I am feeling better and this last bout of dizzies wasn't as bad as last time. Gloria, you mentioned that is was snowing by you. I have a hard time when it rains or snows. Something to do with the barometric pressure I think. Maybe that is why you feel bad. Hope everyone has a great weekend. Thank you, thank you, thank you from the bottom of my heart. I can't believe that some of the only support I get comes from across the ocean. I would love to meet you all someday. Keeping the faith! Melissa |
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So... I am hesitant to say this because I don't want to jinx anything, but I think since embarking on my own brand of VRT I have started feeling slightly better. It is definitely no drastic improvement, but things seem a little less fuzzy. My biggest complaints remain a feeling of pressure/tingling at the bass of my neck and sometimes up the back of my head and just an overall fuzziness and heaviness in my head... especially on movement. I may have said this before but let me reiterate - you all are stars for getting through this. From personal experience, heart disease is nothing compared to labs. We face all of this pretty much alone and no one wears ribbons or does walks for us. My family was so supportive of everything to do with my heart problem.... but they just don't get labs. We look fine and it won't kill us so why should we complain? Unforunately no one understands how much an impaired quality of life will effect them until they experience it. |
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Hi everyone Amanda I couldn't have said it better myself. Vestibular disorders are just not known about and even the doctors don't seem to know much about them let alone the general public. I really would like to raise awareness for this and maybe we should try to when we feel better. That Ilia and Emma website is a such a godsend as is this forum. I read an article about the psychological impact of vestibular disorders and the expert who wrote it said in his experience (and he has dealt with cancer sufferers and serious injuries) vestibular disorders are the most overwhelming because the symptoms are so scary and so never ending for the sufferer. Anyhow I am glad you are feeling a bit better. Are you making up your own VRT then? I am trying to sort something out via my GP but i guess I might have to wait on the NHS. Gloria - love those adages and they are so true! I do hope in 5 years this won't matter and we can live a normal life. Unless you have been through it nobody would understand the burden we carry waking up each day and fearing how dizzy we will feel and if we will be any worse or if any new symptoms will appear. Melissa - despite your set backs I am convinced you will recover because you have had lot of symptom free periods. I know when you feel worse it is so easy to get depressed, god knows I do and it is almost like someone turns on a tap and you can't stop crying but you sound strong and I am sure you will get through this. I have been less tired this week but my ear is bugging me so much, so snappy and crunchy and it twinges inside. I am trying to keep pushing myself and getting through some things ok but it is like this little voice in my brain is constantly saying, 'you feel off balance' and I need to get to a point where my brain stops registering this and i can forget about the dizzy feeling. Keep fighting everyone x |
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Amanda, So true! I couldn't have said it better. This is by far the most taxing thing I have ever been faced with. I have given birth twice and would gladly take on morning sickness, and labor. Jemma, thank you for encouragement. It means so much to me. I think I will get better. I just know it is going to take a lot of time. I also agree, we should start some sort of awareness program. I was in yoga today and overheard a woman tell her friend that she is dizzy most of the time. She said she was dizzy mostly in the winter. Interesting? I couldn't talk to her about it because the class was about to begin. I just wish people understood how awful it makes you feel. How taxing it is to push through the feelings. I went to my Dr. yesterday and she said (get a load of this) "I think you think too much about how you feel. You are just too aware of your body." Ha Ha Ha Ha!!!!!!! OF COURSE I AM TOO AWARE OF MY BODY!!!! You spend the better part of 7 months dizzy and then get back to me. Keep the faith!! Melissa |
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All, I just found this board tonite, and what a relief to find so many people who understand what I have been going through. Six years ago, I had a classic onset of labs. Went through the complete battery of tests at Mayo clinic, and as dianosed with VN, and prescribed VRT therapy. Took 9 months to get back to 100%, but always had a couple of occasions where I could feel it had not quite left me. Well, 2 months ago, I got hit with it major league again. Same morning onset, major dizziness, nausea, et al. I aplied what I learned from the last attack, and for me, getting my head vertical is the best way to alleviate the attacks. Any head movement, or god forbid lay with my head down flat, and it just gets worse. My symptoms seem to be the complete set of what everyone has here: - positional vertigo (worst position is head horizontal, with right ear towards ground) - nausea, with and without dizziness - tinnitus in both ears - nystagmus (I can feel my eyes darting around even when my eyelids are closed) - no hearing loss - neck pain - headaches (sometimes front of head, other times back and sides) - brain fog - depression with having to deal with this - overall horrible feeling when attacks occur Activities that I engage in that make this worse: - anything involving significant head movement - loud noises - visual over-stimulation (flashing lights, walking through the aisles of a supermarket) - computer usage The last 2 months have been a series of attacks where I get some or all of the symptoms. I get progressively better, then relapse, then start to get better again. What a horrible cycle. I have found that taking advil and a antihistamine seems to help me get back to about 90% on most days. I'm curious if anyone is close to these types of symptoms, particularly the headache. I dont remember having headaches teh first bout 6 years ago. Am concerned that the headaches could mean migraine (MAV) or something more sinister. Also, like many of you, I believe this is a virus that will never leave us. It's been 6 years for me already. Something has to trigger or reactiviate the virus - anyone with thoughts on triggers? I am heading back to Mayo on Tuesday to ask all of these questions to the medical team that diagnosed me before. If I learn anything interesting, I'll pass it along. Thanks for contributing to this board. It and the UK womens's labs site are the best source of comfort I've found yet in dealing with this. Best, JB |
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Hi Jeff, Welcome to this site and am sorry to hear you have had a major relapse after 6 years. I know that is what I and I'm sure the rest of us on here dread - that it won't go away. This is my first time with labs. As most people have never heard of it, let alone have had it, it is the MOST scariest thing I have ever known. For me, with all the other symptoms you describe, for me headaches and strange head pains have been pretty much a constant through what is now 7 months. In the first couple of months they were so bad, it frightened me to death and ended up in A & E/ ER to only be told labs doesn't last that long and it is a tension headache!!! As a migraines sufferer, I, too, thought of the MAV thing, but my neurologist dismissed this as my symptoms, in varying degrees were pretty much constant and not intermittent. It is the weird pains at the base of the skull and on the left and right hand sides of the skull. Also, I feel I have a very tight band around my head all the time - which again varies in strength depending on how dizzy or spinney headed I feel. Have been doing VRT which does make me feel better although I don't think it has shortened the time of this thing. When I do VRT, I can feel those 2 sides at the back of my head tightening up. So as this is where the inner ear and balance mechanism is sited, I assume it is to do with this. You are right, and will be interested to hear what the clinic has to say about why this thing doesn't go away. I thought viruses were limited in the time they exist so why does it resurface? Melissa - what are doctors like? Their awareness of the numerous symptoms of labs is so dismal and then when they come out with such crass statements like yours did - it is horrendously unbelievable. Amanda - again, I suffer those odd back of head symptoms you describe. What are you doing for your own VRT? I get so bored with mine which is why we bought the Wii ( finding that helps) whether it is because my brain is being newly challenged, I don't know, but would be interested to know what you do. Am feeling less dizzy today and a bit better - but guess what Jemma - my ear is all bunged up again!!!!!!! AAAAARRRRGH! Jeff - hope things settle down quicker for you this time - keep us posted. Keeping the faith, this too will pass, miracles do happen and time is a good healer! Gloria x |
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Hi everybody! How's everyone enjoying this snow in the UK? It's starting to melt a bit today - hooray! As I have had a lot of balance problems in the past it still comes back to haunt me at times and walking on a different surface always sets me off again. I am still full of cold but the sore throat/aches and pains have gone now. I have gotten off lightly because I have not had a major return of symptoms but the last couple of days have been a bit testing. Not a massive return of symptoms but now and again the world moves and I don't - or is the other way around - lol! Anyway, both my kids are back at Uni and hopefully the youngest will get back to school tomorrow - maybe I will have a little time to myself again! Jemma - that doctor is so right - while you do get used to the minor symptoms of Labs (if indeed you do suffer for a long time) - you never get rid of the fear - it is overwhelming. When I have a serious relapse I go straight back to being terrified of it again - you just can't help it and it truly does control your life. Even on my good days, if I am going somewhere (i.e. a restaurant), I worry beforehand and it brings a return of symptoms. Jemma - have you ever thought of having grommets fitted to drain the fluid from your ears? You have mentioned the crackling many times so maybe this could be halting your complete recovery. Hey Melissa, I have given birth three times and would gladly take all the pain together for a week, no a month, than have to suffer this!!! And, I did it all naturally! I have said many times I would rather have physical pain than this. And I can't believe your GP said that to you - oh, wait a minute - yes I can! They are sush idiots - jack of all trades - master of none! Hello to you Jeff and welcome. You are the opposite to me - it would be very rare that I would have a dizzy attack lying down - I used to love bedtime! I have never had headaches as such but have had a lot of weird feelings in my head along with pressure which used to make me think I had a tumour. I also take antihistamines every day along with a steroid nasal spray to try and keep my allergies etc dampened down as I am sure that they are what is making mine go on and on and on. I am coming up to five years but I have had good times and my worst relapses have always been when I get another virus. My last one (which lasted about 7 months of the more serious symptoms) could have been down to the fact that I stopped taking my antihistamines and nasal spray because I thought I should get off them and the one before that was due to catching the Mumps (yes at 48 years old). Please keep us all informed of what is said at the Mayo clinic - I look forward to that. Gloria, I used to get a very strong pain just above my left ear and that scared the hell out of me. It would come on out of the blue and it would leave me feeling really ill - I don't know if it was the fear that did that or what but it was not at all pleasant. But, happily that hasn't happened for a good while so try not to worry so much about them as it does seem like it is one of the symptoms. If you think about it viruses do stay dormant in the body for many years. Is it the chicken pox virus that can stay dormant and resurface many years later as shingles. Also the herpes virus stays in the body. That is a very interesting question though. Gloria - I know that time is a good healer - but how long - LOL!! I am sick of waiting! By the way I did get to see Avatar and it is quite a 'dizzy' film. Just watched the 2D version but there are lots of camera shots which make you feel yukky. Mind you, I nearly fell asleep half way through - it was OK - but a little boring for me! Take care everyone Sandie xx Amanda, I used to get that tingling feeling in my head for the first couple of years. Sometimes the head pressure would be very strong and I would think I was on my way out at times. However, I did start to write down when I would have these feelings in my head and it definitely would come at the same time each month i.e. about 10 days before my period so I eventually put it down to hormones! Obviously not caused solely by the hormones but because of the Labs and us being so sensitive to everything. |
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Hi Sandie - nice to hear from you. Glad your cold did not set you back too badly. I did think about asking for grommets back in the summer but every time i have seen an ENT they look in my ears and tell me they are fine because they cant see anything wrong with them when they look in the outer ear canal and the ear drum looks healthy. Also my hearing is fine so they just dismiss the crackling sounds as my jaw. I know this is wrong because the noise comes from inside my ears, mainly rhe left and it changes all the time. I can feel fluid in there, and they twinge and flutter and are sensitive to sounds etc etc. I also get wetness in there in the mornings and I had that bleeding at xmas. When I had the pressure test, the right ear had some negative pressure but the left was fine, strangely. The ENT said it could be eustacian tube disfunction but basically played it down and made out it was nothing and would just go if I popped my ears a few times to equalise pressure. I also got a steroid nasal spray after asking my GP for this but it did not seem to do a lot. I know the ENTs would not give me grommets. The last guy I saw in November almost laughed when I said I had blocked eustacian tube and said 'YOU DO NOT HAVE THAT. YOUR EARS ARE FINE AND YOUR HEARING IS EXCELLENT, IF YOU HAD ETD YOU WOULD HAVE MUFFLED HEARING'. He said my hearing was probably so good I could just hear my jaw cracking. All in all it was like you said Melissa, the doctors just making out it was nothing and i was being too sensitve to my own body etc. Easy for them to say when they have no concept of what is like living with this day in day out! Gloria - is your ear infected? you said it is blocked again, does it crack and crunch and feel uncomfortable? I just want to get an idea if this is all part of the labs thing.... I did mention it to the neurologist and he suggested it could be the muscles in the back of the head crunching or he did say something about the ear fluid levels being affected. Nobody has given me a satisfactory explanation anyway and I just want to know it will go because as you say Sandie I kind of feel I am never going to recover if there are still problems inside my ear with fluid etc. Looking forward to hearing from everyone xx |
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Hi all, Was able to manage a rodeo at Madison Square Garden in NYC today. Just very tired and a slight bit off right now. It sounds as if all of our doctors just don't know much about vestibular disorders. Hi Jeff and welcome. Are you in the US? I read somewhere that VN is due to a herpes virus that has laid dormant and attacks the vestibular nerve. Jemma-you will recover! I think it is going to take time and much hard work. You may want to reconsider taking some sort of antihistimine. Other than that, I don't know what can help clear up your ears. Hopefully this new week will bring all of us symptom free days! Melissa |
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Hi Jemma It is so frustrating when they tell you your ears are fine isn't it, but the truth of the matter is that no-one can actually see inside the inner ear even with MRI or CT scans. The only way they could tell anything is after you are dead and they do a biopsy!! This is the reason why they always go by symptoms alone as most of the tests are inacurrate anyway. I suppose I have just learnt to accept my condition and don't even look for a cure now as I know it doesn't exist! Saying that, there are lots of things that obviously do help but at the back of my mind I am always waiting for my next relapse. Melissa - good on you - you went to the Rodeo, that must have been very testing for you as I guess they are pretty noisy! I read that too about the herpes virus being linked to VN. My actual diagnosis is VN because of my balance problems and my balance therapist (from years ago), said that I had probably had the damage done to nerves just outside my inner ear and not inside like Labs sufferers. Do I believe what he said - I don't think so, because I don't beleive any of them and have never met anyone yet who talks much sense (medical people I mean). I have never ever had a cold sore or anything like that so can you have this herpes virus without having any of the obvious symptoms? Not too bad a day for me, just a couple of 'blips' but I have been really busy. Now that my son and daughter have gone back to Uni I have been spring cleaning their rooms. They don't half hoard some rubbish! Anyway, take care everyone Sandie x |
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Small update about my situation, had a virus that started around 4 weeks ago, I have got over the stomach problems but I am still fatigued. This fatigue is just like the fatigue that I had last year when I came down with Labs, weak muscles and achy joints. On a positive note I am basically symptom free now with my balance issues, just have to get through this fatigue and Im back to my old self again, fingers crossed.. DC |
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DC- How long did it take you to be completely symptom free? Meaning no relaspes. Sandie-I agree 100% about not believing a word that the medical community says regarding labs/VN. Not one person has made a hill of sense when it comes to my symptoms. They all think that the dizziness we feel is spinning. NOT, so very not spinning. Just a off balance, swirly head, exhausted, floor floating feeling, pretty much 24-7. Mine actually, hits me around 6pm now every night. I am fine all day, especially in the morning. Does anyone else have this? I guess as the day wears on my brain is just tired of compensating. I hope that this goes away soon. I feel a cold coming on. Something I live in fear of! I am drinking green tea like it is going out of style. Keep the faith. Melissa |
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Hi everyone, Sandie! How lovely to hear all your news - have missed you. It sounds that on the whole you have had a fairly symptom free time. Bet your house seems quiet now. I hate this period just after Christmas when the weather is just awful and nothing but bills come through the door and everything is just a drudge! I did laugh at your comment to Jeff about how you just loved bedtime as this gave some respite from your symptoms. Me too!! Bedtime and being able to rest & lie down makes me feel much better. Although a couple of times I have felt woozy in bed. For me, getting up in the morning is the worst - having to readjust my body to accept I am now upright! Melissa - my symptoms were worse when my sore throat & cold were starting just over a week ago. It is only yesterday & today (fingers crossed) that I am getting back to where I was just before Christmas - not so dizzy but alas not totally symptom free yet! I told my neurologist that for me mostly it is as you describe swirly headed, off balance etc. He said ANY of those descriptions, they still call dizziness or vertigo in the medical world! I feel my best about lunchtime, early afternoon. Watching TV in the evening also stabilises me a bit, then when I get up to go to bed I feel off again. DC - good to hear from you. Although my cold virus is better than it was (colds, catarrh always linger for ages don't they?) but I feel really whacked. I also think the weather does have an influence on this thing. The cold, snowy weather we have in the UK right now has also affected me. Equally, they let my mum-in-law home yesterday. Although very active normally - here she is with her leg in plaster & unable to do very much. So Andy & I were running around getting her flat orgainised and me cooking meals to put in the freezer. We will have to visit daily to make sure she is OK - whilst that is no problem for me - but the extra running around is making me so exhausted. Jemma - my ear is aching, but I think it is the catarrh from my cold. All the noises you describe I think are because all the muscles in the head are tight because of trying to balance the head all the time. Mine is the same. I get so much cracking and crunching going on plus loud ringing in the ears - which of course is all part of this! It is quite hilarious that doing the Body Test on Wii at the moment is telling me my Fit age is 65 years old LOL!!!!!!!! Roll on good weather, NORMAL, healthy times!! Love to all, Gloria xx |
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Caught a cold. I hate that. I took Sudafed today. I hope it helps keep my ears clear. Has anyone taken Sudafed and has it worked? I haven't taken it in years. Long before I had labs. I have a PTA (Parent Teacher Assc.) mtg tonight at 7:30pm. I am dreading it, as this is the time of day I feel worst. I am the 2nd VP of the PTA, so I have to sit up in front of everyone. Ah how I hate this labs! Melissa |
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Hi everybody: Happy New year to you all. I know some of you aren't off to a great start, but things will improve. Katie, great to hear from you. You haven't lost your zany sense of humour. Great to hear that you have been symptom-free. That's great news! A couple of you mentioned having fluid in the ears. I had it too, but have been symptom-free for three months. It started after the doc put me on diuretics (just for a month). Since then it's been fine, but who knows? I'm grateful for every good day. Maybe a diuretic is worth a try? Sandie and others, I know what you mean about fear. Mine has still not completely left me, although for most things it's okay. A friend of mine wanted me to go to Cuba with her for a week, but I declined, because right now I feel I can't do it. I'd be afraid I'd get a relapse, and couldn't handle airports at all. My symptoms seem to recur in the heat and humidity (it was pretty bad all last summer) so I'm going to see how I am this summer, and if I'm okay then I can assume I'm over it. So I am stuck in the freezing Canadian winter, but to make myself feel better I bought a full-length down-filled coat on sale for 70% off. Keeps me nice and warm when I go for walks. Of course a bathing suite would be nice and I am insanely jealous of some of my friends who are flying off here and there. Still I am way better than last year and way way better than the year before, which was just plain awful. Keep the faith guys, I'm living proof that this thing does get a lot better. Didn't feel normal for 2 years, now it's ok, but we will see... There is light at the end of the tunnel. But O what a long tunnel! Maria xxx |
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Hi everyone Well today has been a good day for me in the scheme of things. Not symptom free by any means but less dizzy than normal and not too tired. It could be coincidence but my ear is also less crunchy today! I know that tomorrow or anytime I can go worse again, I know now that a good day does not necessarily mean you will be better soon but at least it gives you a bit of hope that this can improve. Melissa - know what you mean about the spinning thing. Only once or twice have I felt that. Mostly its just off balance, swirly head feelings but the doctors only seem to expect spinning vertigo and if it isnt that then they make out its nothing or not ear related. I dont think many people experience constant spinning vertigo for months and years 24/7. You would literally not be able to do anything if you had that except lie in bed gripping the sides! I think only a handful of doctors really know much about vestibular disorders. I did try sudafed by the way but it didnt do much except make me feel jittery. I am trying some ginger root supplements which are meant to reduce inflammation in the body. Maria - really good to hear from you and glad you are feeling much better. You are right it is a long road but if there's light theres hope at the end of the tunnel! I do hope you dont have any more set backs. I would love to start thinking about holidays and planning things but you just dont want to tempt fate with this as you know as soon as you book anything you will probably start feeling worse again so I am just taking each day as it comes. I still find socialising and talking to people really difficult and I do need to try to do this more and get used to it. The diuretic thing may be worth a try for the middle ear symptoms. DC - glad you are feeling better and hope it continues. You seem to keep a positive attitude to all this which is good. Anyway, hope everyone else is ok and keep posting xx |
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Melissa, Its taken me 12 months to get where I am now, it was a very gradual recovery process with only a few minor setbacks when I got a cold or had sinus issues. What really helped me was regular acupuncture and massage, Gingko and more recently flushing my sinuses with a salt water solution. It really seems to be a slow process that just gets better with time, I also think another important thing is to keep your immune system as strong as possible so that our bodies have every chance to recover as well as not getting any more cold's and flu's which could lead to more relapses. Im taking a chinese herb called Cordyceps at the moment to improve my immune system, its a little bit expensive but I think its worth it if it keeps me healthy.. Hang in there Melissa you will get better with time. DC |
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Hi everyone, I'm back to doing battle with this stupid disease. It's discouraging after having had such a good run. I think I was buzzing around too much trying to get on with life. Boy does this ever mess with your head. I need to remember it's two steps forward one step back. I noticed it return after I was going up and down the stairs carrying a few loads, nothing really heavy mind you, just armfulls of my sons clothes. It makes me feel weak as a kitten. So my symptoms this time round are a little more disabling. The obviously lightheadedness, swooshing in my ears, weak, somewhat shakey and unsettled bowels. Hope the rebound this time will be real quick. My son is moving out this weekend to experience life on his own before getting married in June. Meanwhile me daughter is itching for him to move so she can have his big room downstairs. So lots of changes in my life. We raise our kids to eventually let them go, but a mother's heart always finds this so difficult. Take care everyone |
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Hi All, Well I have decided to seek the help of a certified nutritionist. Why not? I've already exhausted the medical communities help. LOL They specialize in healing your body through diet, exercise and vitamins. I think it is worth it at this point. I have an appointment next week. I had physical therapy today. I just feel a bit nauseous and week right now. Suzanne, I know what you mean by wobbly legs and off. My head is a bit swirly. I just keep dreaming of those 3 beautiful weeks I had without symptoms.... Gloria, Jemma, how are you both? Melissa |
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Hi all, Susanne - sounds like you have a busy year what with your son's wedding and everything. We, too, have a busy year ahead. My hubby's relatives from Vancouver are coming over to stay in July on the way back from a trip to India. Both their kids are about to go onto university/college and so they wanted a big family holiday before they finally grow up and want to be independant! Then in October I have my god-daughter's wedding. Her family are in the south-west of England (Devon) and so will all be staying here as a base. It does frighten me a little, because I just hope and pray I will be enjoying a long period of respite from this or even be totally well!! Again, I started to have a good couple of days this week, but today really feel swimmy headed and very tired - no energy. Its strange how this thing affects your stomach - mine is exactly the same. Melissa - how are you doing? Is the ginger working? I used to drink ginger tea every morning when I had such bad nausea with this. Guess what I'm on at the moment?! Cider apple vinegar, manuka honey and crushed garlic!!! Although known to help people with arthritis, it is also a good anti everythng else. Tastes REVOLTING, but I have to say has cleared the catarrh from my head. I wizz up in the liquidiser 1tbsp vinegar, 1tbsp honey, 3 garlic cloves and then mix a little of this mixture with enough water make an 8oz drink to have 3/4 times a day. The only thing is my hubby has banished me to about 3 feet away from him LOL!!! The things we do! Jemma - are you still having quite a reasonable few days. We've been struck with snow again down south - are you still able to get into work? By the way, back on the tv again with Celebrity Big Brother (for those in America included in the celebrities are Heidi Fleiss, Stephen Baldwin, Ivana Trump and a British actress Stephanie Beacham and Vinnie Jones - both British but resident in Hollywood now). It really is a load of trash, but will watch anything to keepme occupied! Tonight I'll be watching American Idol - how about you Jemma?! Anyway, keep as well as possible everyone. Love, Gloria xx |
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Hi Everyone I just wanted to say if your suffering with labs that it will get better! I had my first attack in August, started spinning and passed out then ended up in A&E, was so scary I thought I was dying at one point. I had a few more really bad episodes over the first few months, but was dizzy and generally felt terrible. It did start to get better then every time I'd think is was getting better I'd get ill again which was very annoying. My GP kept telling me it was a virus that would go away then put me on Prochloroperazine for 2 months which made me feel capable of leaving the house but not much else! The ENT doctor dignosed Labs and took me off the dizzyness tablets which made me worse to begin with but then it did start to get better. I started taking vitiman C and zinc supplements to boost my immune system as I was getting every cold that was going around which made me get dizzy again. I saw a balance specialist today and my balance organs have regained equalibrium! I kind of had a moment yesterday at the football match where in a massive crowd I didn't feel scared and things didn't seem overwelming which made me realise how far things had come on since last summer when the thought of doing that was unbearable! Sorry for rambling a bit but if you're feeling bad just try to stay positive because it will get better and you will be your old self again!! |
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Hi all, I tried to comment yesterday, to no avail, I don't see it here today. I have been doing well during the day, but at night I get slammed with a very swirly head and just exhausted. I made an appointment to go see a nutritionist/holistic to discuss my diet and vitamins. I have exhausted every other doctor, why not try a natural approach. Gloria, I may soon be banished from the room too. God that sounds terrible, but I would drink or eat anything if it worked! LOL I have the same stomach and wobbly legs that everyone else describes on here. Terrible. Yesterday a friend stopped by and I nearly fell over I was so weak. I am sick and tired of this by the way!!!! Keep the faith Melissa |
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Hi all Gloria - not doing too bad but very tired today and so achey. I need a good back, shoulder, neck and leg massage. Don't think I'll be getting it though! I have been managing to get to work as my boyfiend has been able to give me lifts which is a big help in this weather. As I write this I just really want a hot bath and a lie down. Like you am adicted to Celeb BB - sorry this will be the last one apart from the normal one in summer. Also will be watching American Idol when I can. Still using my balance board and I have to say that it doesn't make me feel quite as weird in the head as it did at first. i guess that shows the brain can adapt! Susanne, sounds like you are keeping busy. The social events are the worst for me with labs and I have to confess that I have been avoiding them. I keep wanting to plan a trip or a holiday but don't dare. Going to see my GP next week to find out when I can start VRT. She may have to refer me back to the ENTs I guess - oh joy! Can't wait to get home and have a rest tonight...so tired. Take care everyone xx |
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I was diagnosed with severe labrynthitis in August 09. The 'acute' stage - when I could not sit or walk lasted about 3 days. Then several weeks of pretty severe dizziness, but not vertigo. Now it's January '10. I am still having random loss of balance - for only a second or two at a time. And occasionally my vision is doing strange things. These symptoms I can deal with. My "problem" is that I cannot relax or feel settled. I feel like I'm under extreme stress almost all the time. I'm on edge and exhausted. I find myself worrying about EVERYTHING under the sun. Are these "emotional?" problems related to the labrynthitis? |
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Melissa, you are on the right path. Try exercising or atleast sweating when you feel bad, you need to get the toxins (these are the same toxins that make you drunk & hungover)out of your body. Liver cleanse and a diet change will help, ( I don't know your diet) but watch the sugar and carb intake. Also look into systematic candida and all the symptoms, it is exactly what we go through, it has worked for me. Give it a shot I still have days with hangover like headaches but atleast the vertigo, fogginess and all the other things are pretty much gone. Making it a much easier day. Look into it. Michael |
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Stuart, I was diagnosed with Labs in June. So I have been dealing with this hell for 7 months. Did you mean you were diagnosed in Aug of 2008? Anoymous, I too felt anxious all the time the second month of this dreaded labs. I could not feel settled and I was on edge all the time. Couldn't sleep and basically always felt nervous. My doctor prescribed Zoloft. It took a good two months for it to start working, but it has taken the edgy feeling away. Micheal, I do exercise everyday. I run on the treadmill 4 miles a day. I agree with you that you have to sweat out the toxins. What is systematic candida? Melissa |
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Hi all, Having a pretty YUK week. Not so much with dizziness - although that is there as always but now intermittent. Horrendous migraine from HELL causing once again all my neck muscles to spasm and be painful. I NEVER had all this before labs started. Except my migraines but even they didn't cause lme all this stiff neck and aching body stuff. Despite this, I have tried to move and do some exercise. My god-daughter brought over an exercise DVD called Pump It Up!!! As the name suggests it probably is for a much younger generation! However, as I do not consider myself to be geriatric just yet - I've been giving that a go!! The only thing is I haven't got the bright lycra tops, and skimpy shorts - I'm still Jane Fonda attire (not too disimilar I feel) LOL!!!! It really makes you sweat (so I'm pushing out my toxins Michael and you'll be pleased to know I've started on the Candex again). How is everyone else doing? Don't know about those of you outside the UK, but here at the moment the weather is dull, grey , damp and very miserable - need some sunshine in our lives. Jemma - have you been to see about your VRT yet? Hope to hear from you soon. Hugs, Gloria x |
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Hi Gloria - sorry you had a bad weekend but it's good news that the dizziness is only intermittent now. That shows a real improvement! Do you need to see the neurologist again about the migraines? I am really tired today and quite woozy headed. I haven't been too bad overall but it's just a waiting game with this I suppose. I went to my GP yesterday and she had just received the letter from the neurologist. He basically confirmed he believes the problems are vestibular and not neurological and said it is a common error to rely on the vestibular tests and tell people it isn't that because the tests are normal even though they only test about one fifth of the vestibular system. He did suggest a VRT referral via the ENT so my doctor is going to write to the ENT so see if it can be arranged on the NHS. She did not have any idea how long it might take. She just kept going on about meunieres and BPPV and then said labyrinthitis can take a while to fully resolve. Previously when I saw her a few months ago, she said if couldn't be labyrinthitis as it would have well and truly gone by now!! They say one thing then another and just haven't a clue what they're talking about! I won't go back there unless I really have to. Just got to see how long the VRT will take now... hopefully they will understand this condition a bit better! How is everyone else? xx |
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Jemma, Don't these doctors drive you nuts?! Why can't one of them specialize in vestibular issues? So many people have problems with this and we can't get any answers. Is it so frustrating! Gloria, I know I am repeating myself; ice, ice and more ice for your neck. It does work. I have been very tired by the afternoon. Not sure if it is because it is winter and cold and dreary. My head is swirly and I am exhausted by seven each evening. I had a cold this past week. |
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I have had a few symptom free days, I am just getting my strength back after being struck down with a stomach flu over the holidays. In regards to tests for the vestibular system my acupuncturist told me it is impossible to do any test for a damaged vestibular nerve, no scan or test can show damage in that area. With Labs/VN the only thing that seems to work is VRT and time, I've never done any formal VRT just kept busy with exercise and activities that challenged my balance system. I still believe Gingko helps too and still take a tablet every day. DC |
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Hi Jemma, Like many of us, I too saw an ENT and neurologist as well as two different GPs and none of them had any idea. It was only my VRT therapist who only works with inner ear patients who had a good knowledge of inner ear problems. So hopefully once you get that organised you will have someone with some understanding! What you have written is so familiar - ie doctors saying that labyrinthitis can't take that long to resolve, suggesting menieres etc. I live in Melbourne, Australia, and Alicia Molik is an Australian tennis player who retired a few years ago due to an inner ear infection and losing her balance etc. She made a comeback last night at the Australian Open and the commentators were talking about how ill she had been. It was quite nice to hear them showing some understanding about how long her recovery had been etc! Gloria - it is the peak of summer here - we have had a few of what they call "catastrophic fire danger days" here! Just to add some contrast to your wintry weather. We have just got home after 4 weeks in South Australia staying with family and having a great holiday, doing lots of swimming in the surf. I have been feeling really good so am hoping that this year I might be able to put this behind me!! Am wondering if the hypnotherapy did the trick with regards to the anxiety - its hard to know really! Anyway, take care everyone Cathy |
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Well I had just finished my university exams and was looking forward to my holiday when a day later i got struck with this horrible condition. It began with me waking up with true vertigo, i.e. the room was spinning violently I thought at first I had got out of bed wrong or too fast but the vertigo did not subside for about four hours. I don’t believe my initial attack was severe as I’ve read of stories on this blog of people having true vertigo for days or weeks; mine only lasted a few hours. I was also able to resume work the next day (physical cashier job) and have so to the day although its been extremely trying, I was also able to continue my gym schedule 3 times a week. I went to an ENT a week after the attack who diagnosed me with Labrinthitis and tested my ears for hearing damage and then told me I was lucky to have no hearing damage and that I would recover soon. However For the past 9 weeks (to this day) ive struggled with constant 24/7 dizziness, problems with balance in the dark and probably most disturbingly for me the feeling that I’m always moving or swaying even when I’m still. My left ear (affected ear) feels quite different to my right ear with my left ear sensitive to sound and my hearing feels muffled with a prominent sensation of fullness. I’ve started taking 7500mg of Gingko bilboa as I’ve heard it helps and have witnessed a very slow improvement in my symptoms although the constant feeling of "movement" still remains i am hopeful that this feeling will disappear with time and I will return to normality. I’m still not sure if the virus is still affecting me as I get a slight popping sound when I yawn or am using my jaw i.e. eating and a feeling of fullness in my left ear, although in the past 2 weeks this feeling of fullness has disappeared and my left ear ( affected ear) feels identical to the my right ear. Lately I’ve been trying to retrain my balance by standing on my right or left leg with my eyes closed and timing how long I can balance myself, I’ve been able to balance myself for up to 20 seconds without falling over which I couldn’t do at the onset of this condition so I think this is also positive and shows that I’m improving. |
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Hi everyone Jemma - that is so like a GP - tell you it'll take a few weeks to resolve and then changing their minds! Like I always say Jack of all trades - master of none! So glad though that you and Gloria are reporting some relief from the constant dizziness that is so typical of this. Cathy, I have heard of Alicia Molik though only because she went down with Labs after me (5 years ago for me). I think I remember her trying a come back a couple of years ago? Also, Celine Dionne went down with it a few years back but she seems to have recovered now. Just shows though with all the fitness (or money) in the world it can still really affect your life. Cathy, so glad you had a lovely holiday and I too hope this is the end for you with all this stuff! S - where are you from - you got a very fast referral to the ENT so it can't be the UK - LOL! You certainly seem to have all the symptoms of Labs and if you are improving already hopefully you are going to be one of the 'lucky' ones. I hope so. I'm having a few 'spells' at the moment but mostly not bad at all. Since I gave up my job things have improved for me. I think I was just stuck in a vicious circle, I only worked three days a week but it would really set me back. Now that I don't have to worry about working it has taken a huge pressure off me. My family is still battling with colds and flu at the moment, but even battling with it myself hasn't caused a major return of symptoms (touch wood) - roll on summer! Gary - where are you? Would be nice to hear how you are doing. Take care Sandie x |
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Hi all, S this is a great place for you to get information and share your story, welcome. I have been doing much better. I have a few "moments" of a swirly head in the evening. I have begun taking yoga classes at night, they seem to really help the swirly feeling. I also feel it when I am hungry. Not sure why. Sandie, you mentioned Celine Dionne had labs and the tennis star. Well they have a ton of money and doctors at their disposal to help them. I had a cold last week. I used a neti pot to get the phlegm out. It really worked! Jemma you may want to purchase one. It is a bit disgusting, but you don't have to use antihistamines. Keep the faith! Melissa |
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Sandie- im from Australia, we have a pretty efficient medical system here, i was able to see a GP the day it happened and got a referral to an ENT |
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Hi Melissa - I just love the name 'neti pot'! I have seen them advertised but have never used one. I do however use a saline nasal spray which is very good for shifting all the gunge as well. Melissa I also get quite woozy when I am hungry. Before I had this I never really used to eat much until late afternoon but now I feel as if I must have something otherwise I might pass out! Maybe a problem with my blood sugars dipping I don't know but it's another thing that has reared it's ugly head since I started with Labs/VN.Or maybe it's my age!! I have just started using the Nasonex nasal spray so I'll see how that goes. I suspect I might have nasal polyps as well so hopefully this will shrink those. S - Australia! Lucky you having nice summer weather at the moment while we freeze in the UK! Cathy who posts on here is from Australia too. In the UK we wait about 3 months before we get seen at the ENT. And, then it takes weeks of tests etc before you are given any VRT. Maybe if we got it much earlier we would recover a lot quicker so hopefully you will get over this and get your life back sooner. Did they give you any VRT? If not you can gets lots of stuff on the internet, please ask if you need any assistance. Sandie x |
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Great to hear from everyone. Not posted for a couple of days only my uncle who is 90 and living in the south west of the country (Devon) has been taken seriously ill - so what with having to look after my mum-in-law and organise to go and see him later this week - life has been quite testing! Cathy - so great to hear you are doing so well - and having what sounds to be a brilliant and HOT (weatherwise!) time. Oh for some warm, decent weather. That in itself I'm sure would make us all feel a bit better. Melissa - I'm ice-packing my neck & you're right it does help, but have just been for my monthly visit to the VRT therapist and because of my recent cold, this has set everything back. My balance is really off which is why I have my stiff neck. She says this is quite typical and although won't take as long to get to where I was just before Christmas, I have to go back to my full programme of VRT exercises again. Also, really cheered me up when she said it can take from months to years (!!) for the nerves to repair themselves. We know this of course, but hate it when people remind you becuase I always put myself in the worst case scenario bracket!! She thought the Wii was brilliant and fully endorsed its use for vestibular issues. So, whilst I am not awful, awful, I'm not brilliant either and feel I'm stuck in this phase of not going forward which is so tiring. Good to hear from you S - welcome. I now have this feeling like I'm moving in my head but everything around me is stable, whereas before everything moved. So again it is a progression in symptoms - a myriad of symptoms! The ear thing is also what many of us here experience or have experienced and, strangely, with many it is the left ear. My left ear was affected too and stil is on and off with feeling blocked or raging tinniitus. Jemma - cannot believe or rather yes, I do believe your doctor's comment!! They chop and change their opinions like the wind. I now have accepted that I know what this is and, regretfully know how long this can possibly take to get better and just hope and pray each day that it is gradually fading - with blips en route! Anyway, may not be able to post for a few days if we have to go to Devon - take care, Love, Gloria x |
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Melissa, Gloria, Sandie - yes the doctors comment is rather pathetic isn't it. You would think if they have a patient coming to see them regularly about a certain problem they might actually read a book on it or do some research online so they aren't telling you totally wrong and different information each time! Gloria I have that dizzy feeling in my head. I can hold my balance ok and when the doctors do these balance tests like close your eyes and walk on the spot etc etc I seem ok. Thing is I can hold my balance but the feeling in my head is dizzy. I said to the neurologist it feels like what my eyes are seeing is out of sync with what my ears are telling my brain about my balance and he said that is exactly what happens with this. So there is nothing wrong with my eyes or eyesight as such it is just that what I see isn't matching up correctly with what my ears are telling my brain hence the dizziness. The brain is tricked into a feeling of false motion. I am really achey at the moment, my neck, back shoulders even legs are bad. I guess this thing affects all the muscles in our bodies as we try to compensate. So tiring and draining! My ears are slightly less clicky right now but like you gloria this is up and down. I down quite know what is up with them but it is annoying having these crunching sounds. It is my left ear which is affected most too! Hope your uncle is ok and you manage to get to devon to see him. hoping we all have more energy and better times ahead! xx |
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YES!! To finally and not the first on this blog, hear that you (Jemma and Gloria) both have the EXACT feeling in your head's that I do!! Jemma, you described it perfectly! So it must be a symptom of labs! Why don't the stupid doctors know this? I CANNOT believe that it takes you three months to get a referral to a ENT! What good is that. I only waited two days! Got right in. Now when I call my ENT, she sees me that day! Gloria, you only go to VRT once a month?! Really?! I go twice a week! What is that all about? Do you pay anything for these visits? I just pay a co pay of $30.00 for specialists and $15.00 for my GP. Jemma, I had the same clicking in my ear last week when I was sick. I thought of you. Sandie, don't you just love the name neti? It is too funny. It works great, without putting any pressure on your ears. I too use a nasal spray everyday. It works well. I went to a homeopath/nutritionist today. Quite costly and very interesting. She said I showed viral. Not sure what it all means. She wants me to not eat any SUGAR! I love sugar! She wants me to cleanse my system to get balanced. Of course I got sold a bag of vitamins and herbs all meant to help with dizziness, swelling and hormone imbalance. Why not? What have I got to lose at this point? Gloria, I do hope your Uncle fairs well. Keeping the faith, Melissa |
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Hi all, Just a quick postt before we go off to Devon tomorrow. My uncle got admitted tohospital last night. We think his kidneys are failing apart from the fact he has dementia and doesn't know where the hell he is - he pulled out his catheter - ouch! And his language to all the nurses is very embarrassing apparently! He has never sworn like that before in his life. Another example of how it effects you when the brain goes wrong. I am awful today - I think I am so stressed with worry. My uncle's daughter - my cousin - she & I are like sisters. Neither of us have siblings, but we are very close. She was, naturally, so upset yesterday, I just need to be with her. -My head is splitting, am so dizzy but like we described before - in my head dizzy. - and feel really sick today. Doesn't it just bring back nasty memories when we all started to have this and the symptoms were just too horrendous? Jemma - isn't it weird how you feel so achey with this - like you, neck and shoulders and legs. (Am still icing neck Melissa - honest!!!!) Melissa - another great photo. You put me to shame, because I should upload other photos but haven't got round to it. I read about the neti pot at the beginning of this when everything seemed stuffed-up. I was quite afraid to sniff up water into my nasal passages - does it feel weird or hurt? Although I go once a month to see my VRT therapist - I have exercises (loads!) to do several times each day. The cost to her every visit is £85 per hour (about $60-70?). So expensive to get private treatment over here in the UK. Interesting about the homeopath. I think there is something to it - but like you I do have a sweet tooth. I have to be quite controlled about it, but when I feel fed-up, it is so difficult. What are the herbs & vitamins? Do let us know how you get on. Sandie - hope you're feeling better & not suffering too much. Is it still snowy in the north? Anyway - will post next week & thank you all for your kind words of comfort. Lots of love, Gloria xx |
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Melissa - glad you recognise the same feeling in your head as I do, it is so hard to describe to people who dont have this. You really have to go through this to understand it! AHHH wish we didnt! I have had a bad day, in fact a bad week. All the aching, my neck and shoulders are killing me. I sit at a desk all day at work and it doesnt help anyway but with this on top of everything it is just torture! The aching goes right into my head and I have a horrible headache which wont go away and painkillers dont work on it. I have bought a massage roller thing from the Body Shop and using a TENS machine on my neck. I am so drained and exhausted, need to sleep for a year! My job requires a lot of concentration and it really does tire me out. Melissa we have the National Health Service in the UK (NHS), we get free medical apts which are paid for by high taxes on our wages but we have to wait ages to see consultants and have tests etc. If you want to get in quicker you have to pay privately and it costs about £150 ($300) to see an ENT privately!! It is a frustrating system because you basically have to pay extortionate rates to see the same consultants quicker. Gloria - good luck with the Devon trip and hope your uncle is ok. Anything which causes stress or anxiety makes the symptoms so much worse doesnt it. As well as making the dizziness worse it is just so hard to cope with much having such low stamina. I just have to rest after doing things all the time because of the fatigue this brings. Hope everyone has a reasonable weekend xx |
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Gloria, Take it very easy when you are away this weekend. Try to take a few moments for yourself to relax and unwind. Even if it is fifteen minutes. Jemma, I have dinner plans tonight. Eleven of my friends are taking me out for my birthday (which was in Dec). I am feeling a bit swirly headed today and almost dread it. I just hope to god by 8 this evening I am still okay. Here is a list of the herbs/vitamins I reluctantly bought for a fortune. It is such a complicated schedule too. She wants me to not eat ANY sugar (including those in carbs) for two weeks! I really don't know if I can manage that. Not even bananas. Fungi and yeast 3tsp a day (split the doses up) Boneset 3 full droppers in water (split doses up) E & E -B 2 full droppers in water split up Silver shield 3 tbs a day split up Super Supplemental 3 a day 2 in am and 1 afternoon B-complex 3 a day 2 am 1 afternoon Mineral Chi-tonic 3 tbls a day enzyme #12 3 pills with each meal bifidophilus 8 a day Dong Quai 3 a day Pro-G Yam cream Okay this is ridiculous! But there it is! Not really 100% sure if I am going to follow this. Any thoguhts from some naturalists? Melissa |
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Jemma - agreed - it is so hard to describe this feeling in your head, it is so weird. I still have loads of different kinds of symptoms and different kinds of dizziness, if that makes sense. Is the TENS machine working for you? I read an article last week saying that they don't actually work! However, I hope it does some good for you. All the heavy concentration you have to do at work cannot be helping you recover Jemma. But, there's nothing you can do about that as you need to work. By the way Melissa - we are heavily taxed in this country especially if you are a high earner and all we get is a few minutes with a consultant after waiting three months or longer. Gloria - I sincerely hope your uncle is Ok - and that you are too. Any type of stress like this brings on a a massive increase in symptoms. Take it easy girl! The cost for your VRT therapist actually works out at 137 american dollars, so that would be expensive compared to what you are paying Melissa. For things like this I do wish we had a better system in the UK - it is ridiculous the amount of time you have to wait to see someone and then you have to wait again once you are seen,for VRT etc. Nightmare! We pay a lot in taxes, council taxes etc and what do we get - three month waiting list or longer to see a specialist, the police won't come out when you are in trouble and you get fined if you leave your dustbin lid slightly open! Don't get me started - lol! Anyway, I haven't been too bad of late - the asthma is playing up more lately. Had a visit from a young guy who wanted me to sign up for the Red Cross - he was about eighteen - and he asked if he could sit down because he was feeling dizzy. I said to him " don't talk to me about dizzies" and he asked if I had inner ear problems. I was gobsmacked that someone so youngwould know about this stuff but when I probed further it turns out that his mother has this too. He said she has had it for years and years and years. No good news there then! But, it just goes to show - there's another one suffering. Take care everyone Sandie x |
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Melissa, Systematic candida is an internal yeast infection that can settle anywhere in the body prefering warm moist areas, like the nasal passages, ears, throat as well as the common oral thrush, vaginal and also the digestive tract and your organs like your liver. There is alot too this, there are really not any medical tests or medicines that cure it(thats why Dr's dont really pay attention to it) it is amazing that it affects so many people that we do not know more about it.The problem comes from the yeast living in the body go out of control do to over use of Antibiotics causing an imbalance in your digestive tract, then they overgrow and can spread througgh the blood. The symptoms are well drunk and hungover in plain terms. The yeast eat sugar in the intestines and blood and turn the sugar into alcohol as well as 75 or so different toxins (when making beer, wine or spirits these toxins and the other dangerous alcohol are filtered or distilled out before bottling only leaving the one alcohol that is drinkable, forgot the name)so there is the vertigo, lethargy, constipation/diarrhea, moodiness, weight gain, headaches/migraines and the build up of toxins in the system that the liver has to battle. The liver now gets backed up and the toxins circulate through the body and get stored in the liver, fat and joints in the body making you feel achy and flu like. Look into it, it is an uphill battle but like I said on a good day I feel about 95% and a bad day I have a headache, but I am learning with liver cleansing that I am having fewer bad days and they are less painful. I would be happy to help you in anyway. Michael |
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Gloria, I do hope that your Uncle is fairing well. I posted a list of all the herbs/vitamins the homeopath suggested I take. Then when I checked my post was not on here. Don't you hate that? I have been feeling well. It took me 8 hours to clean my son's bedroom and his three closets today. I only felt a slight bit of swirly head towards the end. Not bad for being up and down and lifting heavy (16) garbage bags full of old toys and junk. Sandie, some people here in the US want a health system like that in Europe. I don't want it! I pay $1700.00 a month in medical insurance. I get a free (ha ha) physical and gyn appt each year. My kids get a free physical each year. I pay $15.00 copay each visit and $30.00 for specialist. We pay $100.00 for E.R. visits. I learned that this summer when I was in there twice. LOL Michael, I was given some anti yeast tonic to take all day it seems. Not sure I buy into the whole thing, but if it works for you, great! I tried an epsom salt bath tonight. It did work great. Try it all of you with stiff neck muscles. Melissa |
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Hi Melissa, when you say you are not to eat ANY sugar at all and you say not even the sugar found in carbs, do you actually know what the difference is? My husband and me have been having this discussion this week. As a rule we try and eat everything organic and with no added sugar. Organic orange juice says on the label 'carbohydrates 10.4g of which sugars 10.4g' We can't however decide whether this is sugar that is in the fruit already and is good for you or sugar that is bad for you!! Drives me mad all this labelling on food, why can't it be simple! That 'diet' of herbs etc she has you on is so weird, don't think I could stick to that! Melissa your post is there along with your list. I nearly missed it because I have a habit of going back to my last post. Hey, I have been cleaning my kid's bedrooms too, must be something in the air. They don't half hoard some rubbish don't they - but I didn't have 16 bags full - lol! Blooming heck Melissa - 1,700 dollars per month - we don't even earn that in the UK!! I think I'll stick with what we have got - and you having to pay again on top of that each time you use a doctor, no thanks! When you mentioned it before I didn't realise you were paying monthly as well! Michael, what you say does make sense. I have a sweet tooth but I am trying to cut down. I don't eat cakes and biscuits, stuff like that, but I do like a bit of fudge and I bet that's full of sugar. Take care everyone. Melissa how did your night out go? Sandie x |
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Hi all I am feeling quite rough at the moment. The off balance swirly head is much the same but I am sooooooo tired and achey and I can feel what seems to be my lymph nodes at the back of my head (occipital) are a bit tender and sore. My neck is killing me. I bought a book about the Perrin Technique which is for people with CFS/ME which was very interesting. Whilst I dont think I have full blown CFS/ME I definitely think vestibular disorders mimic some of the symptoms and I really feel like I have a lot of toxins in me at the moment which is making my lymph glands sore and my neck ache so badly. Apparently when toxins drain out of the brain they go into the tissues of the head and neck before they eventually get processed by the liver. I really feel like I need a trip to a health farm and a year off work. I have bought some vitamin b and c supplements and some echinacea to boost the immune system. Give that a try now! Melissa your list of supplements is huge and very costly! Hope they work! The prices for healthcare in the USA sounds astranomincal. Starting to think the NHS isnt so bad after all... How did you cope with the meal out? Gloria - how are you. Are you home from Devon? Hope your uncle is ok and you coped with the trip. Speak soon xx |
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Sandie, I agree 100% with you about the herbs/vitamins. I am NOT taking them. First of all there is no proof it will do anything and second of all there is no government monitoring of them. I tried, unsuccessfully, to cut sugar out. I agree Sandie, everything has sugar in it. She didn't want me to even eat a banana! Too much sugar. I eat healthy, mostly organic and I exercise daily. I am not overweight and I think everything in moderation. Sandie, my night out was so much fun. I even had a Guinness! I felt a bit off until I ate. We didn't go until 8pm and that is late for me to wait to eat dinner. Talk to you soon. Melissa |
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Melissa, your homeopathic Doctor has you on stuff for Yeast as well as Probiotics and other stuff to clean out your body. I am guessing your in the U.K.? You can get stuff alot cheaper in the states. Alot of the organic / health food companies do the right thing as far as ingredients. The yeast and toxin cleansing your Dr. has you on is good but it will not happen over night, it is a battle, to remember the pills as well as your diet. The fact that you stay very active and eat well to begin with is probably why you are dealing with this better than most. Keep it up you will see a difference. Michael |
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Hey its me again still dizzy :( just a question how long is this 24/7 feeling that im moving while still (diziness or vertigo) going to last its 10 weeks now and i feel as if its my worst symptom and would feel at 95% if it was gone as for the past two weeks my affected left ear feels very good as the fullness has gone but this horrible feeling still remains |
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Michael, Actually I live in the U.S. in New Jersey, just 15 minutes from NYC. I found them to be expensive as a whole, not each individual one. I think I am going to stick to what I am doing. Trying hard to avoid salt. I feel that bloats me and then makes me dizzy. Thanks for your advice. Melissa |
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Melissa, I live in Monmouth county (exit 100 for us Jersey people). We are almost neighbors. Good luck with everything. The vitamin Shoppe is where I go for all that stuff. It can be a little pricey, but you rotate through certain things so you can space it out. You should stick with what the doctor gave you, do some research on your own and ask alot of questions at health food stores like DEAN'S if you have one by you. It has taken me since a relapse in October to get better but I feel much healthier overall because I have learned so much about how the body functions, and how to improve my diet with supplements and vitamins, I am 41 so everything starts to help at this point. Keep it up. Michael |
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OK guys, I've been observing this website since my diagnosis yesterday afternoon and subsequent web surfing, between the really bad bouts of dizziness. It's always there, but sometimes seems worse than others. First off, I guess I should mention that I am 28 weeks pregnant and diagnosed with viral labyrinthitis just yesterday. As I'm sure you have all guessed, this is not a winning combination. My symptoms started on the afternoon of January 17th, and like I'm reading is very common, they came out of nowhere. By the 18th, I could not get out of bed without assistance, and when I did, I was instantly and violently ill. So my husband took me to the hospital, on the advise of my OB. We were told to go to the Labor and Delivery ward (standard procedure considering how far along I am, I guess). While there, my basic vitals were not checked. I was asked about ear pain, but since I had/have no pain, that must have been overlooked somehow. They released me from the hospital with a battery of prescriptions for vertigo and nausea. Nothing has helped the vertigo to this day, though they have me on meclizine and some sort of motion sickness patch. Anyway, I spent the majority of last week in bed, useless and unable to take care of myself or my family. I could not be trusted to be left alone because of the risk of falling, nor be trusted with the care of my 5 year old daughter. Every time I called my OB, I left messages and at one point, it took two days for him to return my phone call, and then when he did, he told me to call an ENT. (My OB will be dealt with as soon as I am back on my feet, I am NOT happy with him.) Great idea, right? Not if you're pregnant! I can't begin to tell you how many ENT's I spoke to last week. No one will touch me without a referral from him. So by Friday I was in agony, not to mention, frustrated and severely depressed, when I called my OB again. Finally, he agreed to see me and get a referral. While in his office, still not knowing what was wrong with me, he prescribed antibiotics and finally wrote me a referral, with which I was able to get an appointment yesterday. I saw the ENT and told her that the antibiotics have done nothing to assist me and she ran me through a battery of tests and came up with this diagnosis. Honestly, I don't know if it's the correct one, but after reading the personal stories that I have, as well as all the medical jargon, I am just a bit nervous, especially since no one would listen to me when I first started having problems....not that they could really do anything about it if they had known. So far, I've been told to stay as immobile as possible, because of the fact that I am now a fall risk and that I can hurt the baby I am carrying. But then I read that keeping as active as possible is the way to go. And of course I can find nothing that combines Labs and pregnancy and what to do when you've got both going on. I don't really understand this disease at all, there seems to be so much conflicting information on it. Can anyone please point me in some sort of direction that might actually help me get through this? Thankfully, at least it does seem to be receding a bit, I can at least sit up for a little while now. Any information, thoughts, direction etc etc any of you might have is sincerely appreciated. |
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Dawn, welcome to Sharp Blue. As I was reading your post, I really got tears in my eyes. I feel so bad that you have to deal with labs at all, not to forget pregnant! I think that right now you are in the worst of it. So I would stay in bed or on the couch for another week or so. Then get as active each day as you can handle it. Start Vestibular Rehab Therapy (VRT) exercises as soon as you can. You can google Hawthorne Cawley and all the exercises are on there. Remember that this can take a long time to go away. It is not necessarily linear. The doctors really do not have much info and are VERY quick to dub you hysterical. With that in mind, keep pushing them. Keep asking questions of your ENT. I assume you are in the U.S. by how fast you got a referral to an ENT. I too live in the US in New Jersey. If you start to feel a tremendous amount of anxiety, it is completely normal. Labs and anxiety go hand in hand. Your vestibular system is messed up right now and your brain has no idea what is going on. So it panics. I never had a panic attack in my life until I got labs this past summer. Always feel free to post on here whatever you want to. Questions, feelings etc.. Keep the faith that this will go away with active participation on your part. Nice to talk to you, feel better soon. Melissa |
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Im feeling like crap at the moment, I came down with a virus over Christmas which has left me fatigued, the same sort of fatigue I felt when I first came down with Labs. The weird thing about this is my balance has not been affected, its actually as good as its been since this all started, I just have this heavy arms and legs feeling with muscle fatigue again.... Im trying to stay positive but this really gets to me... |
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Hi everyone, Returned last night. My uncle - still going - is in the best place - hospital. There is nothing they can do - it is his kidneys and at his age it is just a matter of time and keeping him comfortable. Good to read all your posts. Melissa - how are you doing on all that strange herbal stuff? I do think if you cut out all the nasties from your diet then it can only help, but it is having the strength and determination to follow such a strict regime weeks on end. DC - so sorry to hear you are not feeling too great, but I suppose some comfort in that it hasn't affected your balance/dizziness. Whilst my dizziness or rather sinking feeling remains intermittent, it is the tight vice my head feels it is in, the painful neck/shoulder and headaches. Whether this is the sort of aftermath of the thing, I don't know. Am seeing the neurologist next Thursday , so will see what he says. Dawn - my heart goes out to you. To be pregnant and have labs -just the worst. As Melissa said, you are at the beginning of this and the symptoms are most severe. It gets better although gradually and for quite a few it really seems to go altogether after a short while. However, it does get to the point that you are able to function but with the feeling of wooziness, which you actually get sort of used to. What is most frustrating - as most of us here have experienced - is the fact doctors do not know too much about this thing. Although fairly common, it is not as common as other illnesses like flu and because there are a myriad of symptoms that you can get, not everyone gets the same. So, they may have experience of people with the most common of the symptoms and don't recognise others. As headaches and head pressure have been a big part of my symptoms, the doctors said it is just a tension headache!!! I WISH! Do keep posting and let us know how you are doing. This site has been a god-send for us all. S - sorry to hear you are also still suffering. The feeling you describe does get better and change to being more intermittent and hopefully fade away. Unfortunately, it does take a little while. Although, you say your ear has felt a little better. At 10 weeks I was still having major symptoms, so hopefully for you it will be a shorter process. Jemma - you sound just like me - buying anything and everything to see if it will help. Labs does make you feel as though you need a huge injection of strong energy boosting things. I also think the weather we have had in the UK hasn't helped and I'm sure I get affected by lack of sunshine - what do they call it Seasonal Affected Disorder? I'm now trying vit D not only to build up vit D because of lack of sunshine, but it apparently repairs the nerve ending covering and not making it so receptive to pain etc - like stiff painful muscles. We'll see! Let us know how you are. Any news on the VRT therapy yet? Sandie - hope you are still doing OK? Your talk of having a good clear out - I'm doing the same. Going through the house and bagging up anything that has been in a cupboard and not seen the light of day for a good few months. Old clothes, loads of old ornaments that were only collecting dust, and clothes from my hubby's wardrobe!!! Last time I did this, he actually went down to the charity shop where I had taken everything and bought back his old comfortable jeans!!!!!!!!! MEN! Keeping the faith we will all soon feel better. Hugs, Gloria x |
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Sounds like everyone is having a rough time at the moment. DC - I too have been so fatigued since xmas. Don't know if I have some kind of virus but probably not. Although as I said in my last post, my lymph nodes are tender and my neck is really aching. I am going to try some osteopathy to see if that helps, got my first session this Friday. Dawn - you sound really worried. It is such a horrible illness and what a cruel time to get it when you're pregnant! I have heard a few people having labs when pregnant, one of them is Ilia on the labyrinthitis.org website. If you read her story you will see and it may be worth sending her an email to ask how she coped. Chances are you will be lucky and it wont stay around too long. Good luck though!! Melissa - this thing sure is a pain isnt it! Like you I never had panic attacks until labs but I am hoping they dont resurface because that was truly scary. Here's hoping for better days xx |
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Gloria, So good to hear from you again. I spent $270.00 on all that crap and I am not even taking it. I am going to take the vitamins. I just can't take all those herbs all day long. I think I am a healty person. Exercising everyday and eating well. I tried to cut salt out of my diet this month. I just hope it works at that time of the month. Been feeling fine. Not one symptom now for 5 days. But...you know what is coming up to throw me out of whack again. I too have been on a cleaning spree. Many many garbage bags full of crap! Jemma, I haven't had the anxiety or panic since early October, thank God! That was the worst of this. I hope you are feeling better soon. Like I told Gloria, try to ice your neck when you can during the day. It really helps with the tightness and headaches. DC, have you tried to take a bath with Epsom Salts? It works great to ease muscle tension and aches in your body. Keep the faith all, Melissa |
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Wow, this is a busy message board today! Melissa, so glad you enjoyed your night out. I too feel really bad if I don't eat and then can feel so much better after I have eaten. This never used to happen to me before I got this Labs/VN stuff. I have two slices of toast for breakfast but always feel bad at about 11am so have to have a cracker or something and then I feel ok! Don't think I could drink Guinness, strong stuff, puts hairs on your chest!! My son loves it and its full of iron so it is good for you. S - the off balance feelings differ with everyone. Mine didn't come on until I had been suffering with extreme 24/7 dizziness for about three months and then the balance problems kicked in for the next three months. The symptoms then got a lot milder and I would feel off balance for a few hours a day but this went on for a long time. Over the last five years I relapse at least once a year and it takes me six months or so to get back to 'normal' or what is normal for me! Please don't let that scare you because for most people it doesn't last so long. Today, my balance is a bit off and my head is not good but I do have days where it doesn't affect me much at all. As I said, it just depends on the person, there are no hard and fast rules with this - it is a waiting game! For me, the balance stuff has always been the symptom I just cannot cope with at times - it sucks. Dawn, hi and welcome. I feel so sorry for you being pregnant and having to cope with this. Melissa is right - take it easy for now. Most of us who have Labs cannot move around for a good week or so when we do get it - I was unable to move at all for three days. You will be terrified at this point as to what is happening to you as we all have been but try and be positive Dawn. This is an awful condition to have but a positive attitude helps a great deal. Dawn, this is NOT going to affect your baby so please don't worry about that. (Obviously I mean through your normal bodily functions not the falling over part). Also be reassured that I don't think many people have actually fallen over with this, you will feel like you are going to fall and that the world is moving and you are not but I have had this for five years and never fallen. If you are feeling unsteady, hang onto the wall and use the handrail to get up the stairs. Don't be afraid of this - it is a monster but you will win! Have a look at the UK website www.labyrinthitis.org.uk it really is full of information for new sufferers. To back up what Jemma says, Ilea and Emma who run the site do actually reply to emails sent to them - they really are wonderful people. DC - sorry to hear you are feeling rubbish again. It's the same for me - I'm forever on that roller coaster and I just can't get off. Gloria - you have got to be joking - your hubby went back and bought back his jeans - that is so funny!! Also, I too wish we could have a little bit of warmth. It's quite bright in the north east today but a bit windy. Why is it always windy nowadays? Take care everyone and keep smiling Sandie x |
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Dawn - My goodness, being pregnant and having labs? That is awful. I feel so bad for you. Please just rest and rest and take it easy. The most important thing is to take care of you and the baby. DC - I have dealt with weak muscles and fatigue the whole time with labs. I am getting stronger, but have days where I'm set back again. I really need to watch what I do physically or else I pay for it the next day. My recovery times are getting shorter though. Gloria - It's stressful having to deal with an ill family member especially when you aren't feeling great yourself. You want to help more, but you need to know your limits. What a laugh about your husband buying his jeans back. This must be global clean out your closet week because we have been doing the same thing that past few weeks. We've taken stuff to the goodwill store for the last 3 or 4 Saturdays and I have another pile started. Melissa and Jemma - Of all the symptoms I'd say anxiety is the worst. It is so scary and you feel like you're going crazy. Really, this website has been such a comfort and reassurance to me just knowing I'm not alone and that others share this crazy illness. Sandie - You described it very accurately. This is a waiting game and I'm tired of waiting too. I have been doing not too bad lately although today and the last few days I've felt more lightheaded and tired, but I can still function with lots of rest. I need to go out and do some errands today, so I'll have to make it work. My favourite time of the day also is evening and bedtime since I can just relax and watch tv. Keep looking ahead everyone. |
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Hi all, Well tomorrow will be a true test of how far I have come. My son is a cub scout and has to race a sled and compete in 7 events called the Klondike Derby. I have to go with him because I am one of his den leaders. The Klondike Derby is held at Ramapo Mountain here in New Jersey. We have to leave at 6:30 am and it lasts until 3pm. It is outside ALL day. It is going to be 19 degrees farenheit tomorrow! God please be on my side tomorrow!!! How is everyone else doing? Melissa |
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Hi all, Melissa - you are one brave woman - but when you have someone who depends on you, there is no choice right? Sounds amazing - I'm sure you will be fine. Like me, if there is something to take my mind off how I feel does help. Its when you relax afterwards that it sometimes hits. Good luck & let us know how you do. Susanne good to hear from you. Isn't it funny how bedtime becomes our sanctuary with this. I just feel I can lie down, relax, not feel guilty and feel so much better. But as you say I am SO tired of waiting to feel remotely normal. Jemma - how is your neck & was the osteopath any good? Whilst I have been going to an osteo and physio - it is great for a while then it all seems to come back for me anyway. Hopefully you will have better results. For me at the moment it is the tightness around my head and funny feelings on the sides of my neck up to the back of my skull. I am sure it is all to do with balance as when I do my VRT, my head feels like it is trying to move but can't because it is in a tight sheath. It creaks so much and feels like `i need to oil it!!! I think there is some truth in what my neurologist told me last time I saw him and that is you have to really make your brain and balance challenge more. It is no good just walking around and moving head side to side but to start running, jumping quickly turning -gym stuff or aerobics/pilates. As the weather has been so awful I haven't got out to do any of that. Still use our Wii most days and it is great fun but you can't move around too much - we don't have the room! Also, I have to admit I am not really a gym type person. I do like session keep fit, but pounding a treadmill (Melissa - good on you for doing this daily) and cross-trainer I find boring. Can I think of any more excuses?!!!!!!!! So when I see him later this week he will probably have a go at me. Have good week-ends everyone. Love, Gloria xx |
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Hi all melissa - good luck with your trip, sounds adventurous and challenging, hope all goes well. It will certainly be a test. Susanne - did you ever go for those balance test? I wondered if you have done any VRT or physio since you got this. I went to the osteopath yesterday as my neck and base of my head are aching so badly. I have had aching in my neck for years since carrying a school bag on my left shoulder and I think it damaged the muscles there but recently it has been so bad and the aching at work sitting at a desk is terrible. I think holding my neck stiffly due to the dizzines has been the final straw. The osteo told my I have scoliosis which is a curved spine and it affects about 2% of people which is why I might suffer from this aching neck more. Apparently you are just born with it so there is nothing I can do about it. I am going for a few sessions with her to see if she can help with it. She was not familiar with my vestibular issues particularly but she did sympathise and she said she wont get me doing loads of quick head movements as she doesnt want me to feel worse! I am still very tired. I have tried some echinacea supplements but I feel quite woozy but may not take any more, i dont want to make myself worse. Gloria - gosh you must be spending a fortune on all these therapists! sometimes you wonder if its worth it but we have to keep trying things dont we! Anyway I am just about ready to collapse in front of the telly now and rest. Take care everyone xx |
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Gloria, I think your Neurologist was spot on, I think the best VRT is actual activities that have you moving around and really challenging your balance, simple eye and head movements are not enough.. DC |
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Hi all. I agree with DC. Which is why I'm starting a class of aikido (Japanese martial art) on Tuesday night. In aikido you use a person's momentum against them rather than hitting them, so it should be good as we will be stretching, learning to fall without hurting yourself, rolling on the floor etc, I can't think of much better VRT than that! It'll probably be tough for the first few classes and I expect to be really dizzy but no pain, no gain as they say. http://www.doctorhoffman.com/sxdizzy.htm I have also applied to go back to college full time in September, hence the need for pushing the VRT to a tougher level. Overall it's been a pretty rotten month since Christmas, last few days have been ok, this time last year I was just going through the very beginnings of this, just never thought it would last this long. Take care folks, I wish better times ahead for all. Gary. |
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Hi Gary So nice to hear from you. Hope the aikido classes go well for you and it's great that you have applied to go back to college. Gives you something to work towards. Sorry to hear though that you haven't been too good since Christmas. It's the same for me. The last few days have not been good and I wonder if I'm heading for another relapse. My last major relapse was at this time last year - I really don't know why it should happen again. Strange thing is that last year I blamed it on trying to stop using the Beconase nasal spray and this year I have stopped again but I am using Nasonex instead. I really can't bear to go through all this stuff AGAIN - I get so sick of it. Anyway, I hope you are all feeling a bit better. Take care Sandie x |
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Hi All, I didnt realise i had been off this site for so long, I have had computer problems but back now..I have just been reading through all your postings alot of you are still struggling and i sympathise so much with you all. I have been great for 2 months now but last ween i knew theb dreaded feeling of THE RETURN!!I just didnt feel right my head was muzzy and i was off balance my concentration down and my memory...well!!!!That is when i panic and it makes me worse and i also have to agree with alot of you stress definatly dosent help...anyway after last week my ears are blocked and i am bunged up and the muzzy head still there.I recommend a glass of red wine and a bar of frys chocolate cream and dancing on ice and wild at heart tonight for anyone else who feels like me today.I have 2 children so keep jolly for thema and i work full time so i tend to just carry on but sometimes i could just fall asleep..i do panic when i get forgetfull does anyone else have that??? i have missed talking to you all and take care. Penny |
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Hi Sandie, Sorry to hear you've not been well. This thing sucks doesn't it? I've been keeping track of all the posts since the new year, just haven't had anything really to add, but it seems most of us are having a rough time of it. Am beginning to think this is going to be long term - the aikido has to work - otherwise there'll be no college or anything like that. Penny, I hear you - the forgetfulness is the worst part of this for me. The dizziness and brain fog I can mostly deal with, but my concentration and memory are total mush all of the time. Just another of the many symptoms though. How's everyone else been over the weekend? Gary. |
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Hi everyone, Gary - great to hear from you! Had been thinking about how you were doing. It seems a lot of us are having yet more troublesome times - not that I've had any great ones yet!!! I think over the last couple of months I seem to have got used to feeling like this - not that I accept it. I just want to feel normal. My patience a lot of the time is now at the thin end of the wedge, but then I think what can I do but be patient because there is nothing on this earth that will make any difference - except time. This last couple of days have been very off again. Very dizzy and nauseous. Not quite as bad as at the beginning, but nonetheless horrible. I was reasonable a few days ago except the headaches neck stiffness and did too much and am now paying for it I think. Fantastic you are going to do Aikido - do let us know how you get on and how it affects you. I am finding doing more rigorous exercise is making me feel worse but that is what you have to do to get the brain to compensate - mine is for sure a slow learner!! Also Gary are you still taking the Serc. I remember some time ago you said your doctor put you back on a lower dosage. I haven't taken mine for a couple of months now. Haven't felt any different without it - so don't think it did too much for me. Good luck with going back to college. Is it a full time course? Hopefully by September you will feel loads better and much more able to cope. Keep positive. DC - are you feeling a bit stronger now? Again, because I am going through a rough patch I feel so tired - feel like I've run a marathon - I wish!! Am doing aerobics most days though - at home to a DVD. Sandie - it must be the weather - we are all feeling like this and you were doing do well. I could be very unlady like and write a string of bad words which will tell you exactly how I feel - but I'll keep my composure - not so composed within the four walls of my home at times though ha ha!!!! Penny - how lovely to hear from you again too. Just when you think you are on the up - wham - back down that ladder again! Glad you have had a good 2 months though. Hopefully, you will get over this bout more quickly. Right on with the treats and telly though!! LOL! Well, off under the duvet - always signifies I feel crap! Better days all. Love Gloria xx |
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Hi all, I survived the freezing cold! Yeah!!! It was 11 degree F when we got up the mountain at 7:30 am. When we left it rose to 19 degrees! I was not dizzy or off feeling at all. Maybe God answered my prayers. I am slightly off now. It is the end of the day and I did a lot this weekend. Gary, great idea to start aikido. I think that anything that will force your brain to see the world differently is a good thing. I have been taking a lot of yoga and pilates lately. It really forces you to use your balance. Gloria, I wish you felt better. Is the weather bad there. I always do worse on rainy or snowy days. Would love it if one of the doctors did some research on labs. Maybe give us some answers to why we are affected to so many minor changes. I hope your upcoming week is better. Sleep tight. Melissa |
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Gloria, my strength and energy seems to be gradually getting better, but if I do a workout i feel a lot more fatigue the next day. Gary, doing Aikido will definately help, I resumed my jiu jitsu training last year and I really started feeling better, all that rolling around makes you dizzy but eventually you will adapt to it and start to feel more balanced. DC |
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Hi all Sounds like everyone is a bit rough at the moment and I am no exception. Got a proper cold, the first I have had sinceg getting labs. It hasn't really made me more dizzy yet, but my head is woozy and I am so tired, achy and sneezing, sniffling the works! The worst part is trying to keep working through it AGHHHHH! DC - glad you are improving albeit slowly. I hope you dont have any set backs. Gloria - you sound like me, so tired and fatigued with it all. I just want to feel healthy...please! Melissa - good job getting through the derby day. It sounds like it went well overall which must make you feel more positive. Sandie - i do hope you dont have a relapse. After all this time, you just want to get rid of this for good dont you. I keep using my saline nasal spray but not sure if it is doing much. I still have not heard anything about my VRT. Got some more osteo treatment this week but I really need to get rid of this cold which just makes me feel even worse. Take care everyone xx |
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Is anyone here a musician and has anyone found playing a wind instrument makes this worse? Especially when playing higher notes? |
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Hi all, Been at work all day head feeling muzzy all day.I am so fed up with this normally I just put up with is but this bout the more I think about it the more i feel there is no end to it.My first bout was april 2006 mr mri clear in july 2006 and since then bouts of it although not as bad as the first.I get so scared as sometimes my words come out wrong too especially when i havent slept well i feel today as though i am losing my mind...do you all feel like this and has anyone else had labs for this long back and fore? Gloria..its always a joy to read your postings you cover everything and are always there..so helpful. Gary...sorry your brain is mush like mine I am focused normally but think i am going mad sometimes how old are you? this affects all ages and i can certainly understand why people get so down with it.. Penny xxxx |
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Jemma, what is osteo treatment? Penny, when I read your posts I get a bit scared. Sometimes just when I think I have beaten this labs, it does come roaring back. Of course, not as bad as the first bout of it. I hope in 4 years I am not still posting on here. Not that I don't enjoy all of you, just that I don't want labs symptoms still. I have my "monthlies" and yes I hate to tell all of you this on here, as it is a bit embarrassing. I have been doing really well this month around. Not much in the way of fuzzy head, dizzy or very tired. I tried to not eat excess salt this month and it seemed to have worked. I am a bit off now, but it is the end of a long day. Hopefully, if I am vigilant in not eating salty foods, I will have another good month. Again I am grasping at straws here. Anything to use as an excuse that this won't hit me. I have an orthopedist appt tonight regarding my hip. I have managed to pull my hip flexor muscle and it is not getting better after a month now. The guy is going to think I'm a Kook! Gloria, I do hope you start to have some more good days. You are such a lovely person and really deserve them! Keep the faith! Melissa |
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Hi melissa An osteopath basically massages and manipulates bones and muscles, a bit like physiotherapy to relieve pain and eliminate toxins. I am hoping they can help relieve the pain in my neck which I have had for a while now but has been made worse recently by holding my head stiffly due to dizziness. Jemma x |
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Jemma, thanks for explaining. My physical therapist does exactly that. It has worked great to relieve stress on my neck from holding it in one position. Melissa |
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Hi Melissa,lease dont let me scare you, I hope too you wont still be the same years down the line.We are all different but with the same symptoms..so please dont get worried...i would hate to cause you that...and as i've said my good months are bril and now outdo the bad feelings.You will be fine. I am feeling abit better today nose more blocked but head not as muzzy and light.Ears cracking too so going to steam now..then homework with the kids. Melissa dont worry...i do rant alot when i am stressed...xxxx Pennyx |
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Penny, Really I do understand what you mean. You can't take this for granted and my worrying about it is long gone. Not much I can do, but ride it out. So please feel free to rant all you want!! LOL Melissa |
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Week 11- No improvement over last week, still feel extremely dizzy 24/7 i.e still swaying or moving while still, it feels like this will never end and im starting to get very depressed :( Although my concentration feels fine and only have mild sensitivity to light and my balance only feels slightly off ,this persistent feeling of movement is getting me down as when i was young i used to get quite sea sick and absolutely hated the feeling that you are rocking side to side. At least ive been lucky over the past 11 weeks to be well enough to resume my prior schedule i.e Gym and my Job, although I am still unable to go out drinking with friends which before labrinthitis was a favourite activity D: |
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Hi all, Feeling a bit better last couple of days - not so swimmy headed. More family probs though! My cousin (daughter of my old sick uncle) not only has had to deal with her dad being so unwell, but she had her car stolen by joy-riders and wrecked a few weeks back. As it was an old car she only got a couple of hundred pounds for it. She is on her own having lost her husband a couple of years ago and so money is very tight for her. So I gave her some money to buy another car - not new- but about 7/8 years old. Couple of nights ago I get a phone call from her to say she has had an accident and crashed that car which is non-repairable! As I think I have said before, we are close and she is like my sister so I can't abandon her. So we've had to scrape together some more money out of what little savings we have left after all these expert labs consultants (!!!LOL) to give her to get yet another car. What can you do? My uncle is not eating or drinking very much so it won't be long before his demise I fear - one damn thing after another - no wonder my head spins! Anyway, have my neurologist appointment tomorrow - see what he comes up with next. If he has no more idea then I think we will call it a day as, personally, like we all know, it will take however long it takes and no-one can change that. I am just fed up with it all. You get one or two days where you think it has improved, then as Melissa said, back it goes again. Sorry S that you are still not too good, but at 11 weeks it is great you are doing your job and going to the gym. At 7 months and I think I have had half a glass of wine! Unlike me!!!! So I know how you feel on that score! Penny/Jemma/Melissa - hope you are having more ups than downs! Jemma - it seems you are at the neck hurting stage. Mine is still stiff but a bit easier over the last couple of days. Mine is certainly to do with my balance. I feel it stiffen more when my balance is way off. Melissa - what have you done to your hip? Bad enough with the top half out of sync let alone the bottom half LOL!! Are you still taking your herbs and vitamins? Anyway, onwards and upwards - I think I have stalled lately, but here's hoping. Love & hugs, Gloria xx |
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S, sorry you are feeling so rocky all day. I think that feeling lasted for me about 3 months, then I felt like I was falling to one side or backwards when I would sit down. That too has gone away. I didn't so much feel depressed as anxious. Very scared all the time that it would not go away. It did thank god!!! It is good that you can work and go to the gym. Keep up your regular activities. Gloria, you are a saint! Your cousin is very lucky to have you in her life. I pulled my hip flexor muscle jogging up hills. I usually run 3-4 miles a day on a treadmill. I did it about a month ago. I just ignored the pain and kept on running. I went to the orthopedist and he told me nothing for two weeks! It has to heal. On a more positive note I have now been symptom free again for a week. Every once in a while I get that swirly head feeling, not bad though. My daughter and I went communion dress shopping today. We bought a beautiful dress and headpiece with a veil. I felt like I was shopping for a bridal gown! LOL We had fun though and I felt just like my old self! I cut salt out of my diet this month. It really has helped. I am not taking the herbs or the vitamins that she suggested. I just take a multi vitamin and some b vitamins. Melissa |
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Gloria - gosh you are kind! all that money for a two cars. Your cousin is lucky to have you. Glad you are doing ok at the moment. Unfotunately I am not. I have a terrible cold/flu thing which I think has been building for weeks and the reason why my neck has been so achey. I now have a full on cold which is making me feel awful and I have had to have today off work. I just so want to feel healthy but it feels like it will never happen. Melissa - i have the swirly head feeling most of the time and the feeling off balance sitting on a chair etc, its very scary and horrible. You sound as though you are well on the way to full recovery though. My neck is feeling a bit odd since the osteo treated me yesterday and i do hope she hasnt done any damage. I just worry about everything now. I am so scared of going worse or doing anything that might harm me even more. It really does feel sometimes like i will never be healthy again. All this snow and cold weather doesnt help. I am starting to think i cant keep on working feeling like this as i am getting so run down but i cant just give up as much as i want and need to. Take care everyone x |
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Gloria you are a lovely and caring person and good luck for tomorrow with the neurologist.i am still feeling like i am getting cold with ears still bunged hence dosent help my off balance feeling. Jemma.my neck feels big but isnt!!! do you think physio would help the labs, it also creaks alot.. Melissa.. the shopping with you daughter will have done you good and i am glad you are feeling better. Penny x |
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Hi everyone. Mine name is Jessica. I'm 29 and life in New York. When I was a baby I was in an accident and lost the hearing in my right ear, so imagine my horror when I woke up with labyrinthitis on October 26th, 2009. It took me 6 weeks to "nearly" recover from the initial episode and then just before Christmas I was hit again. By January 16th I was feeling pretty good again, and by the end of January I was feeling really great. I would say 99% like my old self. Then boom: I woke up February 2nd and I literally feel like I'm drunk except instead of feeling happy I feel depressed and my anxiety is through the roof. Had to take my valium last night I was so anxious. I just don't know how you can go from feeling so good to so bad overnight. I was trying to be cautiously optimistic; I just feel so depressed now. Why does this happen? I am seeing one of the top ENTs in New York and he basically staked his professional reputation on telling me that I will be fine and I just need to be patient. He said that he would not tell me something that might embarrass him in the future, but I just don't believe it anymore. There seems to be no rhyme or reason to recovery. I've got to get this anxiety under control though. One thing I have noticed and wanted to get opinions about is that most people who are on "labs" chat sites and who have documented their stories seem to be based in the UK. Has anyone else noticed that? Even on places like Facebook, the labs page there is mostly British people. I lived in Scotland for 5 years and I'm wondering if I could have somehow contracted it in Scotland and it just lay dormant for a few years? |
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Hi Jessica...welcome to you..sorry to hear you are suffering too.I live in Wales and you are right most cases do seem to be in the uk.It must be in the air here.I too get depressed but havent gone doen the line of any tablets atall with this just perservering and getting very worried and fed up.You are not alone and everyone on this site are lovely and all going through the same thing.I only found the site last year and it has been great to talk to others. Gloria..How did your neurology appointment go today? Penny x |
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hi everyone my name is angie ive been dizzy for a few weeks nothing that i couldnt cope with, but on friday i walked up to school to get the kids,and could nt see a thing i felt so drunk, began to panic, my hub had to come get me from school by the time we got home i was on the floor could not lift my head, my body in complete panic i thought i was having a stroke or heart attack felt so so bad he called paramedics, got taken to hos, they just did heart test and said i was fine maybe just a virus but need to see a nearologist to sort out this buzzing in my head!! really wasnt happy as i knew some thing was wrong. Any way my doc referred me to a neurologist and i managed to pay to see private one on tuesday he says def acute labinthitis but need to have mri scan just to be sure, so got to wait for a date, but how do you cope with this dizzyness and look after babies and kids!!! supposed to rest but impossible!!! can see why this can turn into depression, this is so hard, hope it goes away soon. thanks for listening everyone!! |
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Penny: thanks for the welcome. My ENT described the valium for the anxiety associated with this. I take it sparingly, and it helps. It's so just so frustrating that it waxes and wanes like it does. Hi Angie: sounds like you are in the very early days of this. Did your doctor put you on prednisone? That may help with the buzzing in the head. It did for me. I had the MRI too and I was fine. I have a one-year-old baby and a full-time job. It's so hard but I keep going because I know my baby needs me to. Hopefully you recover quickly :) |
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Welcome Jessica, I live in New Jersey 15 minutes outside of NYC. I agree that most of the people on here and the blogs are from the UK or Australia. The anxiety you are experiencing is all normal for labs. I had it so bad I didn't sleep for 4 days. Finally something had to give. My doctor prescribed xanax and Zoloft. I resisted taking these meds for numerous reasons. In the end, I had to give in. I too have two children and work part time. I could not function. The reason that you feel the anxiety is that your vestibular system is not working correctly right now. Your brain cannot process the info that you are taking in. So it panics. You have no control over it. It will go away. Valium and xanax do help a lot. Get into vestibular rehab therapy asap! I mean it. It saved me. I got hit with labs in late May. I started VRT at a Kessler Rehab Center in Westwood, NJ. You need to make sure you are seeing a specialist in vestibular issues, not just a regular physical therapist. I am 98% better now. I have some bad days, but they are not the bad from 9 months ago. Usually around the time of my period I get a swirly head feeling now. Try to be calm, it will pass, it may be a long road. Keep pushing your doctors. Many don't know much about this. You have to be your own advocate in this. Google as much info as you can about labs and read the blogs. All very helpful. As we like to say on here Keep the Faith! Melissa |
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Hi Melissa, thanks for the welcome. I guess that my three main fears are really that 1) I'll never recover and this is what life will be like forever (impaired thinking and anxiety included), 2) that I might get another attack as bad as the first and end up deaf next time, 3) the fact that I'm already deaf in one ear will make it impossible for me to ever compensate. As I said before, I am seeing one of the very best ENTs in NYC and he keeps telling me I'm going to be fine, but he has also discouraged me from doing VRT. Says it's just "for people who require a hands-on approach to recovery". I just don't know what to believe anymore. I'm thinking about finding a cognitive behavioral therapist to help me control the anxiety problem. |
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Jessica, I know and have been exactly where you are now. I too was told by my ENT that I would make a full recovery in 6-8 weeks. She did not even offer me VRT. Even after 4 months of symptoms. I just told my GP to write me the prescription for VRT and that I was going. I made the appt. and it has worked! Get into VRT ASAP!!! If you have a car, you could even go to the one I go to. Westwood is only about 20 minutes from NYC. Kessler Rehab Center Old Hood Rd, Westwood, NJ ask for Jen. To answer some of your fears: 1) you will feel better. It may take 6 weeks or 6 months. There is no way to tell. My head is swirly today b/c it is going to snow. You may notice that you will become sensitive to the weather and during that time of the month. The recovery fromt this is not linear and therefore you won't feel better each day. One day you may be better the next not so great. 2) you won't suffer permanent hearing loss in the ear that is affected. If your ENT has done hearing tests and you haven't lost hearing in that ear by now, you will be fine. Be sure to take an antihistamine like Sudafed or Allavert. I also use a nasal spray Veramyst. 3) the anxiety from this is by far the worst part of it. I went to a cognitive therapist. He did me NO good! This is not about behavioral anxiety. There is nothing that you can tell yourself to stop feeling the anxiety. Your brain right now is not able to process how you are seeing the world right now. Therapy may help in that you can tell someone how you are feeling. I don't think it can stop the anxiety. It will go away. Either with medicines or without. I choose to take the meds. Made my life a whole lot better by the way. Many people on here choose not to. If you want to email personally it is thelttleman@msn.com. As we are so close to each other, if I can help at all please feel free to contact me personally. Try hard not to worry, you will make it through this! Have a good weekend! Melissa |
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Hi everyone, Again - I say again, because I have just written my usual book length post and the page just disappeared on me - so I start again! Maybe it is telling me not to talk so much!! Thank you all for your lovely supporting comments at what is an emotionally difficult time at present with all my family probs. You all are really lovely. Welcome to Jessica and Angie. Really know what you are going through and Melissa's description is very good. Angie, I was just like you at the beginning. Had a stomach upset, couple of days felt swimmy headed which lasted over the forthcoming few weeks and then wham. That was last June. You do get better, symptoms improve. It is slow, but you do adapt. It is also the scariest thing to deal with because it changes so frequently and is up and down over the recovery period. You will be fine. It is also true about doing VRT, whilst it doesn't make it go away overnight, it does help with the dizziness and help you feel better more quickly. Do find out about it. I went to my neuro yesterday. He has changed my pills to a newer version of Prozac (like Zoloft in the US I think?). For me it is not depression, but to help with the nerves in the head and neck to stop reacting so much to the imbalance and dizziness which gives me all this head tightness and headaches. The tablet is called duloxetine and apart from helping with anxiety and depression, it helps with neuropathic pain. So we will see. He said I will get better and he could already see that I have improved. I said to my hubby, just because I put on my best frock and a bit of make-up, he thinks I am making a good recovery. I feel that it is a sad thing that these days I only get dressed up to go and see the doctor LOL!!! He gave me a lecture on trying to be more positive, try to forget my daily symptoms as we all have our crosses to bear in life and this is mine. It will go away eventually and I have to be patient!!! I paid him £150 to say that!!!! Dear God, please give me strength not to punch people like that. LET HIM GET THIS AND BE POSITIVE EVERY DAY!!!!!! Sorry for my rant - but doesn't it make you mad? Jemma - so sorry to hear you are feeling really down at the moment with your cold. Can't you take time off work? You must look after yourself, I am not really sure that they thank you for all your commitment. When I was working, I put work first every time, to the detriment of my health I am sure. Now, I shouldn't think they even remember who I am! Melissa - really glad that you feel good and long may it last and improve even more. When is your daughter's communion? You must post a photo. Pray and hope you maintain your days of feeling great. Penny - how are you doing? I am sure it will help when we start to get brighter and warmer weather over here in the UK, don't you think? Are you still snowy in Wales or like here is it just grey and damp and depressing! Take care all and have good week-ends - if everything is quiet in Devon, then my hubby and I are painting our bedroom. Oh joy! Very good VRT though!!!! Love and hugs, Gloria xx |
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Hi all, Well I was doing ok but cant seem to shift these blocked ears and lightheaded feeling.my ears feel like they are so full of water and my head especially at the top of my nose feels so muzzy.I am now getting depressed with at as it normally stays afew days then clears but this time its over 9 days and i feel I am very snappy with people due to this.Doed any one else get snappy for no reason with this? I have made an appointment monday to go and see my doctor, i dont know why as i will get in there if and if i still feel like this i will start crying as i am worried again..it annoys me as i am so happy go lucky but this damn thing is taking me so low. I HATE IT.. Peny |
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Gloria, many a doctor has told me that this is my cross to bare and that it could be worse, like cancer. Don't they just get you so angry!? They have no idea how difficult it is to live with the ups and downs of this. I never can make plans because I never know how I will feel on any given day!!! Meaghan's communion is May 2, 2010. I hope to God that I am all better by then. May will mark my one year of labs! Good luck painting your bedroom. What color did you pick? I was just thinking that my bathroom needed a paint job. I may just take that on. Very good VRT I would say! Melissa |
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I am feeling really down at the moment. The flu thing is really taking it out of me and I don't seem to be shaking it off. I am now coughing and so weak and tired. My head is woozy and I feel a bit nauseous, its hard to know where labs ends and flu begins. I do sometimes wish I could take a pill and never wake up again, I am so worn down with dealing with this every second of the day! Gloria - your neurologist obviously never has felt dizzy 24/7. They can be very patronising and assume just because you look ok then you feel ok. I feel like I could do with some anti-depressants at the moment though, for depression in my case! I agree with you totally about work gloria but am scared that if I can more time off I will lose my job. Its really hard because at my age everyone expects you to work full time and I just keep making myself do it because I need the money even if its killing me. I just sometimes feel that I will never lead the life I hoped and I won't be able to do all the things a normal person can do. It really does get to me. Sorry to be so negative, I am feeling really low at the moment but I hope everyone else is feeling better and seeing improvements. xx |
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Dear Jemma, When I had my cold at the beginning of January, I felt horrible and it made everything else so much worse - just when I was seeing a little glimpse of light at the end of the tunnel. Clearly, you are are feeling the same. I understand about your work and probably would have thought like you when I was your age, but if you have a doctors certificate, there is nothing they can do about it - otherwise they would be on a hiding to nothing in an Employment Tribunal. Why don't you ask your doctor for some anti-anxiety medication. I absolutely hate any medication, but am at the stage now where if it is going to help get through this nightmare, then so be it. I did have a few months on Prozac when my mum died a few years back. Never have considered myself a weakling where emotion is concerned and thought I would never need to take such stuff. It certainly helped me get over a raw time back then - so am hopeful that this new medication will have similar effects. It does work. Think about asking for some Jemma -ask about what I've been given - duloxetine - as it may help you with your sore neck muscles as well. Flu is really debilitating and that is enough to cope with in it self. You WILL get over the flu and labs - you will, you will, you will. I am feeling reasonable-ish. Not quite so dizzy, but still have the tight-headband and neck thing going on. Anyway, have just helped paint the bedroom which hasn't helped I have to say, but at least I feel I have done something and not felt totally useless. My neck is so sore now. Jemma - really send you big hugs and hope you start to feel a bit brighter soon, but do go to see your doctor - as well as getting your boyfriend to give you extra TLC (which I'm sure he does) and loads of nice treats! Lots of love, Gloria xx |
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Hi Jemma..i am so sorry uou feel like you do snuggle up and keep warm..where do you live? I really do hope you feel better tomorrow. Today i am having a real down scared day, my head is still mushy and i am so forgetfull it is unreal.I still have alot of stress going on and my ears feel full of water and the top of my nose is where my headiness is...I do get scared on these days... Gloria did you get your painting done? and i may sound daft but i am going to see dr on monday adn i want to know what VRT is then i could mention it to her... Just booked to go and see Status quo for the 35th time in July so thats something to focus on and my 40th in April thats something not to focus on!!! I really do wish we could all wave a wand and get rid of this damn thing!! Does anyone get snappy for no reason with this too? is it because i am worried and all sorts of thoughs going through my head.The kids keep me going though.. Penny Penny |
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Thanks for your message gloria - it really means a lot because I just feel so alone with this thing. It is such a cruel condition and really scares me so much. I am scared to go on anti-depressants and worried I might get really spaced out or some other side effects which might make me worse but like you say sometimes its worth it because right now I feel so low. I am pleased you are feeling ok ish because you certainly deserve to see better times. I am so grateful for this forum because sometimes I dont feel I can carry on like this and it reminds me I am not totally alone xx |
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Jemma, You are certainly not alone. As we can all testify, that this site has been our absolute saviour. We all feel each others pain and know precisely how we all feel - at our worst, and, when we feel a little better plus the fear that comes with that knowing it could all return with a vengeance as it does so many times. I was scared of trying strange medications that I had never heard of before! I've really only ever taken paracetamol or ibuprofen and my migraine meds. When you read the notes inside these tablet packs and they list all the side effects, you think OMG. Anyway, I can testify that you won't get spaced out. It is only when you are given muscle relaxants like valium/diazepam that make you feel like that. The neuro said he would never prescribe medication like that if for no other reason than it impedes compensation whereas the amitriptyline that I was on and now this duloxetine does not interfere with compensation. At least consider talking it over with your doctor Jemma. When I read this back, I sound like I am a drug pusher!! Not at all - I'm all for natural alternatives as you may recall with all the herbal stuff I have in my kitchen here! However, I think there are times when we do need something stronger than natural products. My neuro said that he didn't think I would need to take these more than 3 months and would want to see me medication free by late spring/summer. You are so right when you say how cruel this is. Whilst I am feeling a bit less dizzy and think I'm turning a corner - it scares the life out of me that tomorrow it could all come back with full force - it's the not knowing that is so stressful. Jemma - I'll post tomorrow to see how you are. Sleep well and hope tomorrow is brighter. Love, Gloria x |
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Jemma and Gloria, Let me say how proud I am of both of you. Gloria, taking the antidepressant is a huge step towards getting better. I have never once felt zoned out or spacey. I really feel like myself, except I never feel anxiety or panic. My doctor wants me on Zoloft for a year. Gloria, make sure that when you fill your prescription, you throw the side effects bulletin away! Don't read it! Way too scary!!! I have now been on Zoloft for 8 months. I was told that it would help heal the nerve that was damaged by labs. Also it would help my panic and anxiety. Which it absolutely has done. I am actually having a nice glass of wine right now. To feel like a human again, even if brief, is so wonderful. I cherish these moments even more now. I may pay tomorrow, but it is only one glass. Love and hugs (as Gloria always says) Melissa |
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Jemma ..how are you feeling this morning, better i hope.I am not so muzzy headed this morning so a little bit better in myself. Tke care and have a nice day Penny xx |
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Thank you everyone for your concern and support. It really is so nice of you and I am so grateful. I agree with you both Melissa and Gloria and if I keep feeling so down I will go to my doctors about the anti-depressants. I am hoping that it just a blip because of the flu because I have been lower than this, last June I was crying every day and really thought about ending my life. I am not that bad yet so if I can get through it then I hope I can get through it now. I think I am just really worried about getting through the next week at work with such low energy levels. I have only just got up (10.15am) and I am already exhausted. I just want to rest,rest rest. Thank you all so much for caring xx |
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HI all me again!! When i woke this morning i seemrd ok just the tingling fingers..slept funny...but as the day has gone on i am so tearful and ears bunged again.I am thinking all sorts whats wrong with me and feel so stressed..god i want this to go... Do any of you find yourselves talking to yourself ha i caught myself a couple of times and laugheed...think i going mad... Penny |
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Penny - interested you say about tingling fingers. I get tingling in my hands and legs quite often with this especially at night? Do you think it is part of labs? Jemma x |
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Hi everyone, Jemma - the tingling thing I'm sure is part of labs. I had that a short while ago. Although it has passed I had it in my hands legs and arms. Again, more proof that this is a more complicated illness than people think. Not surprising when you think the mere fact of living is controlled by our brains and if that is not receiving correct signals just from one part of our body it puts everything else out of sync. I'm having a hard time trying to get people to understand (especially the doctors!!!) about this horrible tight feeling at the back of my head and down my neck and across my shoulders. I know it is to do with my balance because when I do my VRT exercises which are quite vigorous, I feel the balance systems at the rear of my head tightening and across the back of my eyes. Sigh sigh! Penny, hope your day is progressing into better things. This labs makes you feel so so low, I've never had anything that has made me so depressed in my life which again is why I'm grateful for the anti-depressants. Trying to live every day, make an effort in front of everyone else is such a struggle. Good on you Melissa - go girl and have another glass of wine - you deserve it! Saw the report on all the snow you are having again in the US. Has it reached you as bad as in Washington? Waiting for a call from my brother-in-law in NY to see if they have been affected. Today am continuing with the decorating, but I have to say not without symptoms. Clearly the exertion of yesterday has made my head worse today, but I am trying to battle on remembering what the neuro said - trying to carry on as normal - HA HA! I used to be able to do this sort of thing and not think twice. A creaky bone here and there to be expected in middle-age was all I would experience. This is something else altogether. Come on girls - group hug! We WILL get rid of this and have wonderful times again - remember my saying of a little while ago - will all this matter in 5 years time and what doesn't kill us makes us stronger. Keeping the faith! Love & hugs, Gloria xx |
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Gloria - your posts do cheer me up! I am sure the tingling is parts of labs as you say and I am sure the tightness you have in your head is too. Like you said, anything which affects the brain like this must have quite an impact on the rest of our bodies! I am still very woozy headed, hoping I wake with more energy tomorrow to face the week at work. I totally agree that nothing makes you feel so drained on a daily basis as living with this. Sometimes you find some energy to do something then as soon as you stop the fatigue hits you like a sledgehammer and you have to rest for ages. I hope you're right Gloria and none of this will matter in 5 years time. That would be such a nice relief from the endless worrying that this illness brings. I'm going to collapse in front of Dancing on Ice soon. No wine for me - I am tee total nowadays but maybe some chocolate ice cream. xx |
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Gloria..i am at dr in morning do you thhink i should ask about anti depressants..never taken tablet except antibiotics n pill before so i very wary..i am very very stressed at home though and i know it is making me worse..at work i am fine but do tend to hide it alot.. Penny |
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Gloria, Thanks for the hugs and encouragement. I live in the northern part of NJ. We did not get even a flurry. My mom lives in the southern part of NJ, just 80 miles south of me. They got about 20 inches! It is very cold here today. I'm hosting a Super Bowl party tonight. Of course, I feel a bit swirly headed. I hope it is just from not eating much lunch. I just made a yogurt and fruit shake, in the hopes that it boosts my sugar levels. Penny, I take Zoloft for the anxiety this caused me. It was a very hard decision to make. I got three prescriptions before I even filled it! I went to a very good psychiatrist, she had me start on the lowest dose and break that in half. I took that (12.5 mgs) for 10 days. Then I went to 25 mgs for ten days. Then I took 37.5 mgs for 10 days and so on until I got to 100mgs. That took about two months or so. I never felt a single side effect. Because I slowly titrated onto Zoloft. I can't speak for you. You need to decide if your anxiety/depression is that bad. Mine was so bad that I had a hard time functioning. I never had those feelings before labs. Talk it over with your doctor. Love and hugs, Melissa |
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Hi everyone, I had the tingling and also numbness in my arm/hand/leg for quite a while and it made me so worried that I had MS or something! It eventually passed. I have read lots of people complaining about this on the different websites, not that the doctors would make any connection! Melissa - 'that time of the month' has definitely been a trigger for my symptoms as well - I guess the change in hormone levels or something causes it ... Gloria - sorry to hear all the hassles you have been having! But you do sound like you are recovering slowly which is great I have been feeling really good for about the last 2 months. I think that 2 sessions of hypnotherapy have been really helpful for my anxiety, so much so that I'm gradually taking myself off the amitriptyline that I've been on for several months. Am feeling really positive that I'm ready to shut the door on this 15 months or so! Anyway, just wanting to send lots of sympathy and understanding and encouragement to all of you who are struggling with this! I found a facebook site on labyrinthitis the other day that I hadn't seen before and there was a guy who had recovered from labs and had some 'secret' on how to cure it and was charging $30 for the answer! How annoying - when there are so many people on the internet just trying to offer support and help each other and this person is trying to make money from it! Made me really angry. I do wonder what the secret was though... Take care everyone Cathy |
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Im feeling OK I guess, balance isn't too bad still slight rocking sensation, only thing is the fatigue is still lingering. Taking a green super nutrient drink to see if it helps with my energy and strength, that virus I had over the new years really has me feeling run down, but at the same time I probably haven't given my body enough rest by continuing to work long hours. Im Taking two weeks off in a couple of weeks, so hopefully some rest will do me the world of good. DC |
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Hi all, What a day yesterday. I felt so unwell again, just like 5 months or so ago. I did too much decorating over the week-end. I could feel my head tightening and feeling more dizzy, but tried to ignore it and carry on. So had major spinney-head, sickness, sweats and felt horrible. Feel a bit better today, but still feel sick, dizzy-headed and bad headache. Why oh why is it impossible to do normal stuff without any come back? Good to hear from you Cathy - really hope & pray for you that you continue to be well and even better than that! Don't people who try to make a quick buck out of other peoples' suffering the lowest of the low. The thing is that when people are so desperate for answers they succumb to these people. Let us know how you go coming off the amitriptyline. DC - I take a gloopy super nutrient drink - dark green, tastes not too good! As well as vits etc it has stuff like spirulina and chlorella in it. I think it helps gives me more energy - although today I feel I could drink the whole bottle! Its from a company called Source of Life. Good on you to take a proper break though. Melissa - hope your Super Bowl party went well. My hubby stayed up to watch probably the same game. It was on here about midnight. Anyway, I heard him come upstairs an hour or so later, so I think he was too tired to stay the course! Jemma - hope you are feeling brighter and taking it a little easy at work. Are you taking vitamins - especially a good B complex. It may help with your energy levels. My cousin always says I should open a pharmacy with all the products I buy and knowledge I've gleaned over time!!! Still didn't stop me getting labs though did it LOL!!!!! Going to take it easy today & hope this sickness passes. Speak soon. Hugs, Gloria xx |
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Hi everyone DC - I too feel the rocking sensation and it is particularly bad at the moment because I have had a flu thing which has totally zapped all my energy. I am going to bed at 9.30 every night I am so so tired. Gloria - its true isn't it that it seems impossible to do normal things with this or when you try you feel so bad it isnt worth it! I am over the worst of the cold/flu I think but so tired and just want to sleep. My head is so woozy and feel a bit nauseous most of the time. It's the pitts isnt it! I have tried vitamin B but I have not noticed much difference really. Keep tryng different things but there is no magic cure that we all long for, maybe one day... Keep fighting everyone xx |
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Hi All,, Gloria... how are you feeling? it is awful one step forward and 2 back all the time. I went to dr yesterday and she gave me a number for stress counciling which she said is very good and much better than medication...so i will give it a whirl...Just got home after a long day..work at 8.30am and then straight to school govenors meeting at 5.00.Head been abit muzzy today and an odd off balance feeling occasionally, but what is scaring me now is pins and needles on a morning in my hand which i know alot of you have.Icomes and goes comes and goes..is it labs doing it? Kids off to bed in abit , hubby watching leeds utd so i am going to finish reading my fern britton autobiography and start collen nolans...sad i am!!!! Hope you are all ok and cathy great to hear from you again. Penny x |
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Hi all, Still not feeling too good. Really swimmy headed and migraine from hell. AAAARRRRRGH!!!!!!! As we have been decorating the bedroom, we have been sleeping in the spare room. The mattress on that bed is more springy. Last night ended up on the sofa. My hubby who can be a restless sleeper - every time he rolled over or turned, the bed felt like we were on the sea or a water bed! It made me feel so ill. Penny - it will be interesting to see what you make of stress counseling. It certainly is a different approach and if it works, yes of course it is better than being on medication. I do admire you Penny, another person who also works with this condition. Like Jemma, you are very brave. I was only thinking yesterday, with such a set back, I couldn't have coped with work. As for your tingling - I am absolutely sure it is what some of us have experienced due to labs. Try not to worry too much. It will go away. You just feel that with all these odd symptoms how on earth they can be related to labs. The weirdest illness I think I've ever known and want it long gone! Jemma - how are you feeling being at work - any better? Angie R and Jessica who posted earlier on this page - hope you are both doing better and improving. Do let us know. Love to everyone - keep up the fight! Gloria xx |
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Hi Gloria - These setbacks come all too often for my liking, in fact most of the time I think I am having a setback with a few odd glimmers of hope thrown in occasionally for good measure. I still have the sniffles and the cough so I don't think I have properly shaken off the cold yet. I don't think my body has the energy to fight all these things because the tiredness is just horrendous. I am getting through each day at work - only just. I have to lie down all evening when I get home because of the exhaustion. I really don't feel it is doing me much good at the moment as I think my body needs total rest. I have spoken to my boyfriend and he thinks I should take more sick leave but I am afraid to keep doing this. I also have a few loans that are due to be paid off this year for my car and also my legal education fees which I have been paying off for years now. Also the credit card is not too healthy because my earnings have been hit by going part time and all the private medical bills. I am hoping that if I can force myself to get through work and pay off these debts this year I can take some time off because I dont see this going away any time soon. Penny - well done coping with full time work. Didn't you say your were a nurse - that must be very tough feeling like this! I am sure the tingling is part of labs because I get the same thing intermittently and never had it before and other people also get it. God knows why though. I haven't even mentioned that to the doctors because they can't even explain the basics let alone the more weird symptoms. Anyway we live to fight another day. Take care all xx |
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Hi all, I too have the tingling in my fingers and hands. I woke up the other day and only three fingers had pins and needles (fallen asleep). I was told by my physical therapist that it is nerves in your neck that are pinched and therefore you feel the tingling feeling in your hands. Nothing to worry too much about. We are in blizzard conditions here. The plows have not even come to plow the snow yet. My husband is home too. I am going to attempt to paint my bathroom. Should be interesting, the room is quite small and all that up and down motion. Good VRT. Gloria, how is the redecorating of your room going? Think how nice it will be to sleep in a brand new room! Now if only you had a brand new head to go with it! LOL I have been feeling great. I don't want to wammy myself. I really feel like I should knock on wood right now. Every once in a while I get a swirly feeling in my head. Usually when I am hungry or tired. It is easily remedied by eating or resting. I am going crazy because I can't exercise. I pulled my hip flexor muscle and my orthopedist ordered me to rest it for two weeks! I feel like I have so much energy and can't do anything about it! Melissa |
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Hi Jemma, Know where you are coming from - it just seems like one big setback and only blips of feeling better. I do understand about your work situation and oh boy do I understand about having to pay off credit cards etc - especially ludicrous private doctors' fees!!! Not prying Jemma, but don't you get paid sick leave or have you had time off already and are afraid what your company will say? It is just awful to feel under that type of pressure when you don't feel well. Today, has just been another hard slog. Feeling unsteady and bad headache but trying to push myself because I feel I cannot give in to this. Jemma - do you still get your migraines with the blurry vision? Melissa - so, the weather has reached you! Sounds horrific. Pretty to look at, but it can go on just a bit too long. We put back all the furniture into our bedroom and bathroom tonight. Really pleased it does look great. As the decorating made me feel worse - my hubby has had to finish it off but looks fab. Again, because of how I've felt, we did consider to get someone in to decorate, but the costs were just ridiculous. Not being in the millionaire bracket (BIG LOL!!!) I've always decorated, wall-papered even tiled bathrooms in the places we have lived before. Have always wondered what it must be like to just get people in to do all the work you ever need doing to a place - and then have someone to peel the grapes!!!!!!!! Delirium is setting in now - is this another side effect! Anyway, Melissa really pleased you are feeling so good. Penny - hope you don't feel so muzzy-headed. I do know what you mean about hiding how you are feeling in front of others like you said you do at work. I think women are generally very good at this and to their detriment sometimes. Don't know about you, but my husband - as lovely as he is - if he is unwell - we all know about it! With labs, as many of us have said before, mostly we all look ok from the outside which bellies the angst going on within. Do look after yourself Penny. I was glad to read in your last post that you were off to bed with a good book. I feel bed-time is my haven at the moment. I can relax and feel better in bed knowing I shouldn't be rushing around, doing the washing, ironing shopping, cooking etc. and having to put on the brave face that I think we all do. Tomorrow is another day as they say. Goodnight all, Hugs, Gloria xx |
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Started feeling a bit more energetic the last couple of days, I've also commenced meditating again which I cannot recommend enough for stress reduction as well as healing the body. My acupuncturist told me when meditating our nervous system and metabolism slows right down which puts our bodies into a deep state of relaxation in which the body begins to heal itself. Im making a lot of lifestyle changes to try to get my health right, Im meditating and exercising regularly, Im following a vegetarian diet and have chosen to limit my alcohol intake to 1 or 2 drinks when I do drink which is not very often. Hopefully the steps along with PMA (Positive Mental Attitude) can get me back to 100%.. Keep that PMA everyone.. DC |
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Hi all Gloria - Just to answer your questions.... I did get about 3 weeks of full pay when I was off sick at the beginning of this but was told i would then be on SSP which is about £60 per week. I cannot pay off anything with that so I had to force myself to return. It was awful but what can you do. I got those visual migraines pre-labs but only about once a year. I have not had one since December but have had plenty of headaches and neck aches. Like you Gloria I believe this is all due to the muscles tensing as we hold our heads differently and try to compensate. I feel very muzzy today, being tired makes it worse. I can almost feel the left side being off and woozy and every movement is off. Please go away labs and never return!! Jemma x |
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Hi all, Well my daughter woke up today with a mystery rash. She already had the chicken pox, so I am not sure what this could be from. She had a fever and cough two weeks ago that lasted a week. The pediatrician put her on an antibiotic. I have to take her to the dr. today. Just a bit worried that is why I am telling you all. I successfully painted my bathroom. I am a bit sore in my shoulders. Not at all dizzy though. Again, I don't take the days I feel well for granted. I never know when I will get hit again. We got 14 inches of snow. It is pretty for today, tomorrow is another story. Remember to ice your necks ladies. It makes a world of difference, especially for headaches. My headaches now are all in the back of my head. Like a tight band around the back. Keep the faith! Melissa |
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Hey its me again, at the crucial milestone of 3 months another week same symptoms :( I was wondering if anyone could either describe me some VRT exercises or provide a link for them. Anyways Ive been trying to keep as active as possible and doing my full routine in the hope that one day ill wake up and this nightmare is over because it feels like its going to last an eternity at the moment. Also Id love some reassurance from someone whose 24/7 dizziness eventually disappeared to find out how long this horrible symptom lasts :( |
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Hi all, S - good to hear from you but sorry you are still suffering. As I'm sure you realise this is a slow progressing thing. My neurologist said it is well known in the medical profession that the recovery process is not a line that starts at the bottom (the worst period) and then rises to the point of optimum wellness which is how most illnesses work. With labs it zig zags - peaks and troughs all away along the recovery period which differs from person to person. Oh joy! The dizziness also starts to become intermittent although at 3 months mine was quite constant like you. VRT exercises have helped me - I'm not sure it speeds the recovery period, but doing them does make dizziness less severe. Google the well-known VRT exercises Cawthorne-Cooksey. They sound daunting to do, and maybe initially you may think you feel a little worse but then find you start to feel less dizzy. I go to see a special physio for my VRT. She tailors them to suit me. I see her about once a month. She tracks my progress and then ups the exercises to make them more challenging. Now I am at 8 months I have to start jumping and running around - aerobic exercise, tennis stuff like that. Having said that we haven't had the weather for me to come out of hibernation yet LOL!! Anyway, good luck and let us know how you do. Melissa - how worrying for you. Maybe it could be measles? It isn't a reaction to the antibiotics? Children pick up things so easily and you feel so helpless as what to do sometimes. Just what you need with the weather so bad your way. Hope all is OK - let us know. Give your daughter a big hug from me - she must feel rotten bless her. I'm really interested to hear what you have said about the headaches at the back of your head like a tight band - that is exactly what I have been experiencing as I have said before. The doctors all dismiss it as a tension headache because I'm so stressed out!! To be honest it is them that are causing a lot of my stress! I'm convinced it is all to do with our balance being off. What do you think? Anyway, glad you did your bathroom - are you pleased? Do you tend to do most of the decorating in your house Melissa. It is only since I've had this that my hubby has been helping - he can't stand any DIY at all. Jemma - if I win the lottery this week - you'll be my first port of call and then you can give up work and concentrate on getting better. Wouldn't that be grand?! DC - glad that you are feeling stronger. Can you say that you are back to feeling normal now? You are quite right about the PMA - I try very hard. I also do deep breathing most days. My neighbour taught me and I must say it does help me relax. Wish I could indulge in the odd glass of vino though - now that does help me relax. I never have drunk what I call a lot because of being a migraine sufferer, but a glass now and then does do wonders. Anyway, am feeling a lot better although this morning was very dizzy, but just a bit light headed this afternoon but not without that tight band as you described Melissa. Love and hugs, Gloria xx |
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Thanks gloria - I dont play the lottery but maybe I should. I think that we deserve some good luck having had the cruellest trick of labs cast on us! I have just phoned the doctors to chase up my VRT to be told that I need to ask the consultant as they cannot help me, so I emailed his secretary and she said they never had the letter from my GP - back to sqaure one! it really is hopeless and so much to bear when you feel bad. They just dont give two hoots about people suffering. Gloria - I meant to ask, do your ears still crackle? Mine are up and down but still not right and I still feel crunching in the left one. Also you know you said the dizziness is now intermittent for you does that mean you feel normal for parts of the day? I wish I did. I sometimes question if I have improved at all. S - sorry you are still not well. I remember the 3 month milestone all too well. Praying for improvement, feeling very scared and having my first (useless) ent apt. Have you seen any specialists yet? I am not really the person to reassure you as I have been having 24/7 dizziness for nearly 10 months now but I do know that it is quite rare to be like that so I am just unlucky I guess, you will probably improve quicker like a lot of others. Melissa, hope your daughter is ok, the last thing you need now is another health scare. Have a nice evening all xx |
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Gloria, I couldn't say Im 100% normal in regards to the labs/vn, but all I can say is Im getting closer all the time, still have a slight rocking sway in certain situations like busy food courts and places with bright lights, another problem I still have is a slightly fuzzy/snowy vision, its really hard to describe, its more noticeable on bright white backgrounds or when reading text. My main battle now is to get my strength back to what it was before Christmas, I honestly believe that going out and getting wasted prior to Christmas caused me to get run down and then come down with a virus again leaving me totally fatigued again, so thats my main reason to not drink anymore, its just very hard on your body and with what we have been through its just not worth the relapses.. DC |
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Hi everyone, Jemma - hope today finds you feeling better than you did this time last week. My ears - they are better although I wouldn't say totally. My problem ear - the left - still feels a little full but what I get now is a lot of tinnitus and sudden onset of imbalance of hearing in either ear. It almost feels as if I have gone deaf in one ear. It doesn't last too long, but is very disconcerting when it happens. Still get quite a bit of crunchy sounds though. As for my dizziness - perhaps it is not a fair description to say it is intermittent and the rest of the time I'm fine - oh I wish! Whilst the severeness of the dizziness has subsided and at times to a fairly unnoticeable level. The rest of my head with the tightness, pressure pains at the base of the skull and back of the head are always there. I'm sure if those muscles relaxed, then I would be more dizzy. Certainly don't feel normal at all and I cannot say I have had a period without any of these symptoms at all. I know what you mean when you say you wonder if you have improved at all. I said the very same to my physio I went to today. I said the pace of improvement is so glacial that I don't know if I am getting better or not - but then thinking back a few months to how I couldn't even cope with my day and was just lying around, crying all the time - then there is improvement as I'm out and about, driving the car albeit feeling odd all the time. Thankful for small mercies I suppose. DC - This thing is quite incredible isn't it? If someone told you that you would be struggling with an illness for a year you would call them crazy. But here we all are doing just that! It's the pits though when you think to go out on a special occasion - like you did before Christmas - really have a good time and then have to pay for it by regressing ten steps back! DC before all this happened, were you conscious of your health and fitness only you are very active and sound like you look after yourself diet wise etc or is this a step you've taken since having labs? Melissa - hope all is well with you and your family & that your daughter is OK. Send hugs & love. More woozy headed today - very tight head and neck - lots of ice and heat pad. I keep alternating so hope will improve. Have good week-ends. Love, Gloria xx |
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Hi all Gloria - I am feeling more positive than this time last week. Thank you so much for your caring and interested messages. I have shaken off the worst of that cold which has helped a bit as not as fatigued. The tiredness does make this seem even less bearable because at least if you have energy you can cope more with the dizzies. In many ways what you say I completely feel myself. When things are bad it feels like there is no improvement and I get despairing but like you said 6 months ago I was crying all the time and not just every few weeks and I could not cope with as many things as I do now. I suppose when I try to think back there must be improvement but I have never know anything so slow. Sometimes you wonder if a lifetime is enough time to recover from this!! I do get some moments - fleeting moments - of almost normality and it is heaven. Reminds me what I used to take for granted all the time. I still like being in a car, I feel almost completely normal when its moving providing I havent got some other ailment. The osteo is still treating my stiff neck. I think I need to try and do more exercise to build up all my body muscles to deal with this. Like you say Gloria I may have to try more vigorous exercises like tennis or aerobics as we move towards summer (wishful thinking methinks!) I might buy a heat pad for my neck this weekend. Take care everyone xx |
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I am feeling so alone, so down, so negative at the moment. My story: I lost my lovely husband 18 months ago, it was sudden, a brain aneurism, there was nothing I could do to save him, I so wanted to. I had support, my family, but being me I tried to be strong, showed everyone I was coping when actually I wasn�t. Then 4 days before this illness, my ex-husband, my children�s father, died suddenly of a heart attack in his sleep. I�m not sure whether his is relative but I have been told that stress can bring labs on and I was under a lot of stress. After my husband�s death I threw myself into my work, anything to blot the sadness out. For 10 weeks before this illness I was on a strict diet, the Cambridge diet, where I would only consume just over 400 calories a day. The morning it happened was Monday 2nd November 2009. My alarm went off and I opened my eyes and got up and the vertigo hit. I struggled with it and it passed. I�d never had that feeling and put it down to my diet and went downstairs and had drinks and something to eat. I didn�t feel too bad and started getting ready for work. I bent my head over the bath to wash my hair and WHAM the world span and I collapsed on the floor. I took what seemed forever to pass, but was probably only a couple of minutes. Dazed I phoned my boss and was crying over the phone, he told me to phone the doctor straight away, which I did, but couldn�t get an appointment until the afternoon. I also phoned my daughter to come over as I didn�t trust that it wouldn�t happen again. When I got to the doctors, he took my blood sugar and it showed that my blood sugar was really low, he said he was surprised I was able to get there. He gave me a chocolate bar and said eat that and go home to rest. That was it. However when I got home that was not it. The dizziness got worse and my son, who lives at home, got so worried he called an ambulance. They came, took my blood pressure which was very high, but heart monitor and everything else, including blood sugar was fine. However they decided to take me into A & E where I got examined and they decided to keep me in as my blood pressure was high when laying and low when standing. The next day the doctor came and told me I had a UTI and that can make you dizzy, gave me penicillin and sent me home. The next day I had sickness, etc. and four days later ended up back in hospital and stayed 4 days to get rid of this UTI which they said caused the dizziness. On the day I was discharged I was all over the place with dizziness but they still sent me home. In the days that followed I went back and forth to A&E with the same dizziness. In the end they gave me a heart scan, CAT scan and everything, including blood has all come back normal. The only thing they have found is that I was low in vitamins and was told to take a multi vitamin. At the moment I feel so alone, I don�t have anyone I can talk to about this, I think as it has gone on so long people as so surprised I am still in this state. I feel I should get out, and I do attempt to walk up and down the street, but there are times when I feel I can do it and other times when I panic when I�m out because I feel I am going to faint. I am better now than the early days, I know I have improved, but I still have the pressure in my ears and also a burning sensation in my left ear as though I have an infection but the doc says its clear. Also my neck on the left side is painful, it feels like my gland is up, and around my left ear also. I suffer with headaches, something I have never suffered with and also my shoulder and arm ache. I find I can cope in my own home but the moment I go out, I find it hard. The movement around me makes me dizzy. I wish my darling husband was here, he was so kind and would have helped me no end. Also I cant work but need to. The bill wont get paid on the SSP I am getting paid at the moment and I keep having to dip into my savings which wont last forever. There are days I just want to end it all, I don�t want to be like this forever, I cant see it ever getting better. Reading your posts has really frightened me, I need to get back to work. I have always been an independent person, now I am a person that relies on people to do things for me, in fact apart from my children, I don�t have anybody. I feel so alone in this. I still haven�t seen an ENT. Nobody seems to care. I don�t want to be here. This is no life. |
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Hi all, Dear Shirley - welcome to this site and if you have been reading our posts you know it is our saviour. I am so so sorry to learn of everything that has happened to you. Life can be so cruel. I and all of us here totally understand how you feel because labs is such a horrible and strange illness, doctors find it difficult to diagnose - even so called specialists. Mine was preceded by a virus, but, like you I had had a few years of extreme stress too. It is alarming when you read that we have all had this for a number of months - but it does become easier to handle and does get better. It peaks and troughs and you think it isn't going away, but each 'trough' isn't as bad as the previous and they slowly reduce in severity. Anxiety, ear pressure, headaches, painful neck, shoulder/arm aches is all very typical and I can relate to all of that. Shirley - please don't feel alone - you are not. We are all here for you. Use this site to rant and rave because we all know and understand what every stage is like. Do get to see an ENT if nothing else but to confirm your symptoms and get into VRT (Vestibular Rehabilitation Therapy). These are head movement exercises to help re-train the balance mechanism. Help relieve the dizziness and do make you feel a little better. I, unfortunately came on here today to say I will be away for about 3/4 days only my uncle who I have recently mentioned finally passed away yesterday. So I am going down to Devon to comfort my cousin and help with funeral arrangements. Take care everyone. Speak soon and Shirley - Melissa on our site has us say the mantra - Keep the faith - this too will pass! Love & hugs, Gloria xx |
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Shirley - Sorry to read what a distressing time you have had and now you have this to contend with. From the symptoms you described it sure sounds like an inner ear problem but I wondered if the doctors have suggested labyrinthitis or have you just had to work it out yourself? I completely empathise when you said nobody seems to care as the doctors are hopeless with this and have no understanding of how debilitating and strange it makes you feel. Perhaps you could ask to see an ENT and be referred for vestbular function testing. This will show whether you have any significant vestibular damage. Even if you don't (like me) then it is still very likely you could be suffering from labyrinthitis anyway because the tests are not accurate and only test one fifth of the balance mechanism. However if a problem does show up then you will know definitely what it is. Once you know what you are dealing with then you can come to terms with it and start trying to do something about it although you will have read on here that for some of us the recovery process is long and arduous with many ups and downs along the way. If you havent already done so read the www.labyrinthitis.org website and the guestbook on there too for more info. I have read that stress can cause labs and I also strongly believe certain medications can. It may be worth considering if you do take any medications whether they could be damaging your vestibular system. I really feel for you especially not having your husband to support you. It is some comfort to be able to rely on those closest to you when you have such a scary and debilitating illness. Please try to keep the faith. I still have lots of down days 10 months on but there is every chance you will recover quicker than this. Gloria - so sorry to hear about your uncle. I am thinking of you and all my best wishes for your journey to Devon and getting through the next few days. I just wanted to say that in reference to your earlier post about the tinnitus and momentary deafness you get, it does mention these things in the symptoms section of that labyrinthitis website. Take care and let us know how you are xx |
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Shirley, I am so sorry that you are feeling so lousy and have to deal with this all by yourself. This blog has helped all of us. Please don't be scared when you read what we post on here. I think it is cathartic to vent and get it out. After a while the people in your everyday life, although they are there for us, don't necessarily understand how we feel. This is not a linear recovery. It can takes weeks, months or years to get back to 100%. I am on month 9 and now have mostly normal days. I get hit with a swirly head now only if I am tired or hungry or sick. It has been a long road to recovery. I have to say that even though the experience was awful, it has really changed me in a positive way. I don't take anything or anyone for granted now. My body is my temple now. We have been given one life and one body and now I treasure it. So this weekend has been trying to say the least. I have felt fine. My poor poor daughter has been so sick. She broke out in an awful itchy rash on Thursday. I took her immediately to the pediatrician. He told me they were hives. So since my kids have all sorts of allergies, I decided to take her right over to our family allergist. He said not hives...get a load of this... he said bed bug bites! Can you imagine my disgust and surprise. Well I wasn't buying that diagnoses. We haven't traveled and she has been sleeping my bed now for two weeks. I don't have single bite mark or rash. Also, as the day progressed she got more and more spots. Finally after a very itchy night and me up with her. I took her to the dermatologist. One look at her and she said erythema multiforme. Yes a new one for the books. This is two diseases now that I had never heard of and have had to deal with. So I called her pediatrician and he said her strep test came back positive. She has strep throat. The strep throat is what is causing the erythema multiforme. Basically her little body was trying to fight the strep and broke out into a rash. Ah the joys of new rashes, ear infections etc... Talk about worrying. So now she is on three medications. One of which she has to take 5 times a day! She is only 7 years old. Thanks for letting me rant. Hope everyone is doing well. Gloria, I am so sorry for your loss. You must be very sad at this point. I do hope you feel well for the funeral. Keep the faith! Melissa |
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Melissa, I agree our body is a temple, if we start treating it like one we will heal from this, it may take time but we will heal, I have made some big changes in my life since getting this thing and the only way to stay positive is to look at this like wake up call and to start taking care of my body and mind. No more junk food, exercise as often as possible, meditate every day, no alcohol and keep a positive mental attitude.. DC |
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Hi Gloria, Sorry to hear about your uncle, it really puts everything else into perspective when you hear news like that. Hope you are doing ok. Take care, Gary. |
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Hi everyone. Really need to vent today, so I am sorry if this is a bit on the long side, but I just came from my regular ENT check-up and things did not go well. It's only been 3.5 months since I contracted labyrinthitis and I've been seeing the same ENT since the first week it struck. I chose him because he is one of the best ENTs in New York City and has been listed among the top doctors in the United States many times for his contributions to the profession. He has been very encouraging all along, and as many of you know here, labs can be a long road with lots of ups and downs, as well as tons of anxiety and depression. Today I went to see him after a month since my last visit and I told him how I am in a good phase right now, but that I had another bad period at the start of February. He asked me what happened and I said that I just woke up Febraury 2nd and felt like I was drunk. I've been battling brain fog, unsteadiness, and anxiety every day since. He then proceeded to tell me that I've made a great recovery, there is nothing more sinister underlying the illness, and that "we all have days where we don't feel so great" and that my anxiety issues are probably the real problem and that he can refer me to a psychologist. My jaw nearly hit the floor! Anyone here can tell you what I described to him today is par for the course with this illness. I then said that I get the feeling that he doesn't seem to believe in uncompensated labyrinthitis and he got visibly irritated and told me not to put those words in his mouth. I asked him why he doesn't believe me when I say that I'm not experiencing a linear recovery, and he said "who says recovery from illness is linear?" Then I said "well, don't most illnesses get steadily better over time?" and he said something about how we all pick up new viruses all the time and they can make us feel bad or something like that. Then he suggested that I start seeing a new doctor that specializes in the ear only. Basically, he decided to part ways with me! Since I could see that things had deteriorated between us, I decided to request VRT and Vestibular Psychology services at the RUSK Institute here in New York. He told me that he doesn't generally make a referral unless someone can barely function, but he agreed to do it anyway. He thinks the Vestibular Psychology service will be of most benefit to me and admitted he hadn't thought of that himself. He filled out the referral and that was that. I will go see this new doctor he recommended for me, but I feel so crushed today. He was my only support system. The one person I thought could understand because he's an expert. It makes me feel like a nutcase to be told that "we all have good days and bad days". I mean, I'm sitting here with the monitor bouncing at me and a head that feels so sluggish it's like a have a weight pulling down on my brain! I feel angry. |
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Hi jessica I completely empathise with your frustration. The way many doctors treat people with this condition is quite frankly disgusting in my opinion. I have heard so many people feel frustrated and upset when they have visited a doctor or ENT because of the lack of understanding they encounter. They either act like there is nothing wrong with you or treat you as if you are a hypochondriac that just needs to stop worrying. If they had to spend a day feeling this way maybe they would understand how weird we have to feel all the time for months and years on end! I am still 10 months into this waiting for VRT and keep having to chase it up because i dont seem to be getting anywhere. I had a panic attack on sat night which was awful. Whilst my dizziness has been not too bad these last few days I have been coughing and really short of breath. My heart keeps racing and my muscles are trembly. I dont know whether this is due to labs but i have a feeling it might be a reaction to the bromeelain supplements i have bee taking. I have stopped taking them now. How is everyone else? Gloria, hope you're ok? Sandie not heard from you for a while and Maria? Also Susanne are you doing alright? Take care all xxx |
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Thanks, Jemma. Do you take any medication for anxiety or depression? I'm thinking about starting a trial of it. I read on several website (including Wikipedia) that SSRIs can help speed labyrinthitis recovery in some patients because it helps stimulate new neural growth ... plus I really want to stop feeling like I'd rather die than live like this forever. I know that my inner ear is causing me this anxiety and the anxiety fuels the dizziness, so I want to combat the anxiety too. I feel lucky that I can start VRT whenever I want with my healthcare plan, but I needed to have a referral. They should call me within a week to set-up an appointment. So anxious to get the ball rolling with people who understand! |
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Thank you Gloria, Jemma and Melissa for your replies, its so nice to know that I am not alone and there are people out there that understand this horrible illness. I have not yet managed to see an ENT yet. I'm not looking forward to it as after reading all your post it really does seem a waste of time. My GP is absolutely useless, just tells me it will get better with time. I am not on any medication as nothing seemed to work for me. In the early days the only thing that seemed to work was stugeron but I only used to take it when I really needed to. I am not one for taking tablets but at the moment if they could give me a drug to alleviate this then I would take it like a shot. I had some more bad news today, I had put in for some benefits and today got told I didnt qualify for any. I am a widow living on my own and only get SSP which you probably know is 79 pounds at week. How on earth am I supposed to live on that. So more stress. Hope everyone is OK today, one day I will write on here that I am feeling near normal. Cant wait for that day to arrive. Gloria - I am so sorry to hear about your uncle, and thank you for taking the time to write to me before going off to your family. Shirley x |
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Jessica, I am so angry! These doctors are ALL the same! They don't have any understanding of labs at all! I went to two GP's before the one I go to now would listen to me. They all said that I was anxious. That woman my age (39) experience a lot of anxiety due to changing hormones etc.. HA HA Ha !!! Hormones I wish! My ENT was very patient with me and she told me that it will take a year for the nerve in my ear to fully heal. That I should expect "moments" where I will feel the symptoms. I had constant brain fog and rocking sensations for 4 months straight. When the fog lifted and the rocking stopped, I started to feel like I was walking on a funhouse floor. Like the floor was moving with me. The anxiety was AWFUL! Three different dr.s prescribed Lexapro. I didn't want to take it. I fought it hard. In the end, I did seek the counsel of a psychiatrist that prescribed Zoloft and Xanax. It has helped tremendously. I can honestly say that I feel 100% better most of the time. Now if I feel dizzy I don't panic. It took a good 2 months for the Zoloft to take affect. Jessica, you will come across many doctors that just don't understand this. Getting into VRT as soon as possible is your best bet. The physical therapists are the ones that will really support you through this. They deal with people all the time with vestibular issues. Rely on your instincts and know that you are not crazy and do not need that kind of help. You just need someone to listen to you and understand that this is not going away as quickly as you hoped it would. Shirley, I hope that you have seen better days. Try to see and ENT as soon as possible. Jemma, how have you been feeling lately? Sorry about the panic attack. I HATE that feeling. Panic attacks were the first sign that I had labs. One night I woke up and had a huge panic attack. I had no idea what was wrong! My daughter is much better thank god. That was a bit scary! My kids are off for winter break. It is snowing here again. Gloria, I hope all is well! Melissa |
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I remember when I came down with this labs I had anxiety and panic for no reason at all, at the time I was feeling the best I had in years mentally and physically, the Doctor says to me "around this time of the year (holidays) people experience a lot of anxiety and worry", I was blown away, this guy was totally missing the point that the reason for the anxiety was the dizziness and imbalance. He ran blood tests, throat swabs and urine tests which all came back clear, but they did shown signs of infection but he didn't know what sort of infection, so he sent me home with antibiotics. On the next visit he says it may be your thyroid and we should run tests next time I see him, I never went back to him. So then I went to my regular GP who says its Labyrinthitis and Sinusitis and it will take time to heal, that was 14 months ago and Im pretty much functioning normal most of the time, but I do believe that the virus responsible for Labyrinthitis has lasting effects on our body physically and this would explain the fatigue and weakness which lingers for months and even years following the initial infection, some sort of Post Viral Fatigue Syndrome seems to accompany Labs and VN.. This is just my theory anyways, stay positive everyone.. DC |
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Hey again its me , I hope everyone out there is improving. Well its Week 13 for me and im getting better slowly i believe, the 24/7 diziness is still there but i feel like i can cope with it for the moment. I visited my ENT for the 2nd time after 3 months and he has begun to do the typical send around to a neurologist because hes not sure now if its Labrinthitis, im 100% sure it is and had to have a MRI which i knew would be normal and was 100%. Anyways Ive had alot of suffering in the past 13 weeks so i hope this horrible thing disappears, its been particularly tough considering pre-labs Ive suffered with a general anxiety disorder my entire life which has only been exemplified by this horrible condition and has made me deeply depressed :( |
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Hi everyone Just popping in to say hello and have been reading Shirley' story. It is so sad. Shirley I feel so sorry for you and wish I could help but as we all know it is only time that will make you better (so your doctor is right in that respect). How much time is the question. For me, I have had it for five years. Albeit, it is on and off for me. Never 100% recovered but able to live a 'normal' life for some of the time. I agree with you about the stress aspect bringing on Labs. I had had very mild dizziness just after a terrible throat infection/cold and this lasted for about 5 months, it didn't overly affect my life. Then my Dad went into hospital for a heart operation. My Dad is a big guy, weighing in at 21 stone though he is 6' tall. I convinced myself that because of his weight he was going to die on the operating table and one week after he had the operation (which went really well) the Labs hit. I was unable to function at all for about 5 months. I also take stugeron as and when I need it - for shopping in town, going for a meal etc. I swear by it but wouldn't take it everyday though I do know it is prescribed for people with menieres disease. Where are you from Shirley? I am sure it is the UK as you mention the 79 pounds p.w. SSP. This is what I got when I was on the sick from work. I ask because I am from the N.E. of England and I have a friend who was fighting for benefits as she was told she was not eligible. She went to a place called Disability North as they said they would help her fight her case. I don't know what the outcome was but maybe there is some group where you are that can help you. NOBODY can live on that small amount of money. Are you eligble for housing benefit and council tax benefit? This is an illness that totally controls your life and it is so unfair that it is not recognised. Hello to everyone else and Gloria I am thinking of you, take care. Sandie xx |
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Hi everyone, I'm back for a few days before we go back again for my uncle's funeral at the end of next week. You have all been so kind with your words of concern. THANK YOU xx. It was lovely of you too Gary to especially write on here. I do hope you are continuing to improve & life is better than this time last year. I am completely stressed - it is not easy having to sort other people's problems out and dealing with yourself when you are not 100%. We are a small close knit family and really, now it is just my cousin & I left - so we have to support each other. Although she looked after her dad, he supported her financially as well. Now that is gone, she is in a state of panic as what she will do. We have gone through everything and have made a plan of action (sounds like when I was at work!!). She will have to increase her hours at work and her son who lives with her will have to start contributing more. I know I don't have kids - but what is it with some of them that think at the age of 27 - as he is - he doesn't have to pay his way because he lives with his mum?!! I have been so unbalanced and swirly headed whilst away. My cousin's house is smaller - smaller room sizes and isn't it weird how that effects my head - but in a way it has been a good test, because I know I have had to just grin & bear it and carry on. But, I just am so fed up with not feeling right. When you need all your energies and need to feel normal - it is such a strain when you don't at times like this. Shirley - I do hope you are a little better or at least feel you are coping a bit better. People say money isn't everything but it is. Sorting out my cousin who is in a similar situation. Everything you do each day depends on money in some way or another. We have to keep strong & positive though. S -my ENT consultant sent me to a neurologist. I think it is their way of saying well there is nothing sinister going on because of negative MRIs, and there is nothing more they can do. It is a waiting game. So not to make us feel abandoned, they refer to a neuro who will probably prescribe some sort of anti-depressant - which is what happened to me. Melissa - so glad your daughter is better. Hope you are still doing great? Jessica - your post about your visit to your ENT resonates so well. Initially I went to hospital because everything was so scary. They told me I had a tension headache and for me to get my hubby to massage my head!!!!! Then recently, the neuro said I was looking so much better and clearly progressing - that's the thing with this - you look OK from the outside which belies what is going on in the inside - right?! Jemma - hope you have felt better having stopped the bromelain tablets. I think you have had a little relapse of your labs symptoms. Post flu/cold that you had? I did last week - probably stress-related. I had blurry vision, objects jumping around and huge sweats plus more dizziness than of late. So, as we have said before it peaks and troughs all the way through. So you don't get any idea really that this is getting better or going away. Sandie - how lovely to hear from you. Thanks for your concern too. We all keep trudging on don't we? Good days, better days awful days all intermingle. It does become a way of life. I am hoping for better weather very soon. I'm sure more warmth & sunshine makes us all feel more energetic and brighter. What are you up to - apart from recent events - we have been decorating the inside of our house. Still got the front door to do this year though!!!!!!!!! Anyway to all the Sharp Blue Crew (that's my name for us all now LOL!!!) - my love and hugs. Gloria xx |
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Hi everyone, I'm back for a few days before we go back again for my uncle's funeral at the end of next week. You have all been so kind with your words of concern. THANK YOU xx. It was lovely of you too Gary to especially write on here. I do hope you are continuing to improve & life is better than this time last year. I am completely stressed - it is not easy having to sort other people's problems out and dealing with yourself when you are not 100%. We are a small close knit family and really, now it is just my cousin & I left - so we have to support each other. Although she looked after her dad, he supported her financially as well. Now that is gone, she is in a state of panic as what she will do. We have gone through everything and have made a plan of action (sounds like when I was at work!!). She will have to increase her hours at work and her son who lives with her will have to start contributing more. I know I don't have kids - but what is it with some of them that think at the age of 27 - as he is - he doesn't have to pay his way because he lives with his mum?!! I have been so unbalanced and swirly headed whilst away. My cousin's house is smaller - smaller room sizes and isn't it weird how that effects my head - but in a way it has been a good test, because I know I have had to just grin & bear it and carry on. But, I just am so fed up with not feeling right. When you need all your energies and need to feel normal - it is such a strain when you don't at times like this. Shirley - I do hope you are a little better or at least feel you are coping a bit better. People say money isn't everything but it is. Sorting out my cousin who is in a similar situation. Everything you do each day depends on money in some way or another. We have to keep strong & positive though. S -my ENT consultant sent me to a neurologist. I think it is their way of saying well there is nothing sinister going on because of negative MRIs, and there is nothing more they can do. It is a waiting game. So not to make us feel abandoned, they refer to a neuro who will probably prescribe some sort of anti-depressant - which is what happened to me. Melissa - so glad your daughter is better. Hope you are still doing great? Jessica - your post about your visit to your ENT resonates so well. Initially I went to hospital because everything was so scary. They told me I had a tension headache and for me to get my hubby to massage my head!!!!! Then recently, the neuro said I was looking so much better and clearly progressing - that's the thing with this - you look OK from the outside which belies what is going on in the inside - right?! Jemma - hope you have felt better having stopped the bromelain tablets. I think you have had a little relapse of your labs symptoms. Post flu/cold that you had? I did last week - probably stress-related. I had blurry vision, objects jumping around and huge sweats plus more dizziness than of late. So, as we have said before it peaks and troughs all the way through. So you don't get any idea really that this is getting better or going away. Sandie - how lovely to hear from you. Thanks for your concern too. We all keep trudging on don't we? Good days, better days awful days all intermingle. It does become a way of life. I am hoping for better weather very soon. I'm sure more warmth & sunshine makes us all feel more energetic and brighter. What are you up to - apart from recent events - we have been decorating the inside of our house. Still got the front door to do this year though!!!!!!!!! Anyway to all the Sharp Blue Crew (that's my name for us all now LOL!!!) - my love and hugs. Gloria xx |
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Sorry folks - after my first submission - it didn't accept and went into error page. So I re-submitted. Sorry for the double entry! |
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Hi Gloria Sharp Blue Crew - love it! I'm hoping for some warmth soon too, it certainly does make a difference. I have had quite a busy week as my daughter is on her half term holiday from school. Have been to the cinema twice and have been shopping in town and have been for a coupe of walks with her. The main challenge though was taking her to the Chinese New Year celebrations in the city centre. I did take some stugeron but it was still quite scary at times. There were thousands of people there and we were right in the middle of it all. I had visions of getting crushed in the crowd and my balance did go a bit but I managed to get through it and did quite enjoy it. We were there for 5 hours so I did really well. As for the decorating - I have had the paint and new bits and pieces for the kitchen and the en suite for months but haven't got round to it!! I think the front door put me off big time! But I must say the front door does look good. If you want to know the paint I used so you don't have to go through the same nightmare then I will pop into the shed and get that for you. It was definitely using the wrong type that caused all my problems. Take care Sandie xx |
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Gloria - nice to hear from you and glad you are coping ok with all the arrangements albeit with a swirly head. I know exactly what you mean about smaller room sizes etc it happens to me as well. I haven't been too bad dizzy wise this week but my heart rate feels too fast and a bit like its pounding sometimes and I feel a bit nauseous too. I dont know if it's the after effects of the bromelain or just labs again. I hope not to repeat the panic attack on sat night but you just dont know what's round the corner with this. Jessica to answer your question I dont take any anti-depressants although at times I have been sorely tempted to ask my GP for some just to try to help get through this. So far I have resisted because I hate taking things but we will see. Some people avoid them but some find them very helpful so I am not sure.... DC totally agree with you about that post-viral fatigue. When you have this it is as though your body just cannot cope with anything else, so if you get even a minor cold or something it just makes you feel so bad and exhausted. Sandie - nice to hear from you and glad you are feeling ok right now, long may it last. Did you ever have any formal VRT Sandie? I am still chasing up about mine. The ENT I saw privately does not seem to know if they offer VRT at my local hospital, in fact nobody seems to know. At this point I feel like they barely know what VRT is. They thought I meant balance tests when I first mentioned it! I cannot believe people who are supposedly highly qualified in these areas are so clueless. I may have to travel to Manchester anyway which will be a bit of a hassle especially trying to fit in around work. The wait goes on.... Speak soon Jemma xx |
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Gloria, Sharp Blue Crew!! I love it! Sorry that you have been so stressed. May I ask, if your uncle left any money for your cousin? You said that he supported her, he must have a will that he left her some money to live on. I know it is not my business, but I know that you are trying to help her. As for the 27 year son, my husband's nephew is 30 years old and lives on his Grandmother's (my husband's mother) futon in her one bedroom apartment!!!! With NO job!!! What is with these kids today? At 30 I worked and had a child and house and husband! Gloria, I too feel a bit swirly headed in small homes. One of my very dear friends has a small home and striped wallpaper and ceiling fans. That room really gets me!!! LOL Well I have been 100% better for a good 98% of each day. I usually feel a bit swirly in the head before I am due to eat a meal. I also feel it a bit before I go to sleep at night. I'm a bit troubled by the fact that each morning I wake up with fluid in my right ear. Anyone else have this? I wonder what it could be from. Any thoughts? Keep the faith Sharp Blue Crew!! Melissa |
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I find it comforting that the majority of people that post here eventually drop off. I take it as a sign that they got better and didn't feel the need to vent any longer! I wish we could get status updates on how those people are doing today. Still I have read some scary stuff that makes me not want to read the older posts. One person said that they read an article about labs that says if you still suffer after a year, you will always suffer. Is that a fair assessment? Melissa: I am considering taking Zoloft or Lexapro or maybe Wellbutrin? I've heard good things about these particular 3 medications. I am worried about the side effects, but have to weight it against the terrible anxiety I feel right now. Do you think you will be doing as well if you weaned off of them? |
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Jessica, I think that at this point in labs I would be fine if I weaned off Zoloft. My plan and my dr.'s plan is to wean me off in October 2010. She wanted me to go on it for 12-18 months. It has helped me greatly to not panic over the symptoms that lingered for so long. I really feel that I am almost 100% better. It took me 9 months to say that. I will say that I never take it for granted. I could wake up tomorrow and get slammed with symptoms, but I would not panic over it. That is how the Zoloft has helped me. As for healing the nerve in my ear, I have no idea. I would like to say that yes it sped up my recovery. There is no way for me to know that though. As for the side effects of Zoloft, NONE! Really and truly, none. It is important to seek the counsel of a psychiatrist when taking these meds. I found that my GP had no clue what she was talking about with the SSRI's. Always get the real (brand name) Zoloft, not generic. The generic has additives that make you sick. Something that I learned first hand. Real Zoloft or Lexapro starting at half of the recommended starting dose. DO NOT jump onto them at the full dose! Make sure that you half the smallest dose. So if you take Zoloft that would be 12.5mgs for ten days. If you start Lexapro that would be .5 mgs for ten days. Then you gradually go up each ten days. I found that 100mgs of Zoloft worked best for me. I can't even believe that I know so much about this crap!!! It really did help me though. I am not one to take medications, but I really had no choice. Good luck. My advice is to not read back about what everyone wrote. You will drive yourself insane. Your symptoms and length of illness may be much shorter than theirs. Try hard to not get nervous. Fight really hard to get back to you! You can do it!! Melissa |
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Hi All, thank you for all your replies. I've managed to get another cold which has made me feel off but I did manage to go into town to get myself some reading glasses as I've noticed since having this thing that I do feel worse when I cant focus properly. I thought I would be quite bad with all the lights in the shop and with the actual eye test but I was surprisingly fine. I even managed to go into a couple of other shops and would through the shopping centre and even though on occassions I felt a bit panicky, I really was ok. Coming home on the bus I even said to my daughter that I can feel I have made an improvement. However the following days I have definately felt imbalanced but I am hoping this is all down to the cold they I've got. I'm also thinking of going back to work if I can get a lift in and a lift home. I'm working on that bit. I do have my own office at work and my work in generally computer bound which again is the reason I bought the reading glasses. I'm wondering what anyone thinks and if those who have returned to work think it has made them feel better or worse. I'm only asking this as I dont want to return to work and make this thing worse. However I am thinking that maybe it will make me feel better and be a kind of VRT as at the moment I still havent got an appointment even to see an ENT. I keep phoning but still no appointment. Any views on this would be greatly appreciated. Hope your all fine, Gloria I think you are being so strong with dealing with everything you have going on in your life. Take care Shirley |
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Shirley, I have been at work since day one and Im now at month 14 and nearly recovered, I think staying busy is important with the recovery process. DC |
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Hi all, Shirley - I'm so pleased to hear how positive you are being - well done you. My eyes have been weird with this thing too. I wear varifocals, but at the onset of this my brain could not cope with varifocals and dizziness. I spent a fortune to get, what was recommended, and that is 2 pairs of glasses. One normal distance and one for reading. It is a pain because I have to keep swopping, but still find I can't wear my varifocals for any length. As for your cold - anything like this seems to make labs symptoms a little worse, but you soon recover back to where you were before the cold. Although you maybe can't see it, but you are progressing. Keep onwards and upwards Shirley! I think if you can manage to get back to work - even part-time or shorter hours until you see how you fair - is a very good idea. DC is right - if you can keep your mind pre-occupied it does help you not think so much about your condition. Do you have an understanding employer? Jemma - guess what - the ear thing has returned. It feels so full and really hurts. Also have started to get daily nose bleeds. Went to the GP she said the nose bleeds are as a result of all the steroid nose drops the ENT gave me and have weakened the membranes in my nose - I need it quarterised!!!!!! Felt really off and shaky today - am convinced I am having a small relapse. That anxious feeling creeping up all over you - it is so horrible, but am carrying on with all the things I have to do today - you have to don't you! Hope my SBC friends have a good week-end! Hugs Gloria xx |
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Hi everyone Shirley you sound much more upbeat and I am pleased you are seeing progress. Hope it continues. I went back to work after a month due to finances. I dont know if it has helped as regard VRT but psychologically it has not helped me because I dont feel normal and I am constantly aware of it. it is a strain trying to keep going especially when you feel really bad and many times I come home feeling very tired and upset. That said, I suppose sitting at home all day would have made me feel down anyway. its the devil or the deep blue sea really! Gloria - oh no about your ear, mine have been ok this week but I have suffered a relapse of the anxiety which i had hoped had gone for good. Even though I am not consciously anxious about anything my chest is so tight, I cant get enough breath, i am shaky and my heart is racing. It gets worse as the day goes on and has been like this since sat. I hate it and dont know why it is happening. I wondered if it is to do with compensating and the brain adjusting again because dizzy wise I have not been too terrible this week. I do hate the anxiety though and if it doesnt improve soon i may be forced against my will to take something for it. This illness is a nightmare! xx |
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Hi Jemma, so sorry that you are not having a good time - when is it going to get better for you? I am not too bad at the moment but not brilliant either - oh I wish I could get those times back again when I felt good before all this - you do take a lot for granted when you have your health! Today I have been out for lunch with a friend. I was dreading it this morning as I didn't sleep at all last night (couple of hours at most) and I am always so much worse when I am tired. I met up with my friend at 12 noon and was still feeling very wobbly. I did take some stugeron. However, once I was in there I was absolutely fine. The place was heaving, for one it was half term and for another they had a flipping discount deal on with coupons, which we didn't have! And it was sooooo hot. Anyway, as I said I was great and stayed for three and a half hours! I do wonder if I just get myself worked up about things, even though I am not consious of doing that because I am usually OK once I get there. I did get VRT from the hospital but by the time I actually got my appointment with the balance guy I was only having minor problems, I was actually back at work. It took about 9 months before I saw him. The VRT you do get is no different to what you see on the internet but if you like I can post it for you. As you can tell by the amount of time I waited I went through the NHS and I saw a consultant who is supposedly a top specialist. He did nothing for me. My friend paid to go private and she got the same guy!! He did nothing for her either! Melissa,I agree with you about Gloria's cousins's son. He should be paying his way. I was working at the time I met my husband and took on his child full time and another part time and I was only 23. Then we had three kids together! Kids these days don't know they are born. We pamper them too much! Glad to hear you are feeling so much better, good for you. Jessica I'm at five years with this now but don't worry too much - you may recover much sooner than that. I have seen reports on the internet that most people are done with it by two years if the symptoms last more than the usual 6 weeks but I also read one report a few months back saying that five years could see a recovery too. I'm at five years in March so I'm keeping my fingers crossed. I must say though that I am feeling better than I have done for a long time though not reovered, I still have awful days, but maybe I feel better because I am not working now. Gloria - you make me laugh - you are having your nose quarterised - do you not mean cauterized. You don't want four noses do you!!! Seriously though it sounds awful. What drops do you use and how much. I use Beconase nasal spray which is a steroid and often notice small amounts of blood but have never had a proper nose bleed. If this is happening to you I might just ease off a bit on it. Gloria how long have you had Labs now? I used to get that anxiety feeling and it does 'creep' over you. Mine used to start in my upper arms and then it would affect the upper part of my body - that's what would start the anxiety for me every time. But, you are right - you just have to get on with it and take each day as it comes. Take care everyone Sandie xx
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Hi all, Shirey ..welcome to the site..it has been my saviour these wonderful people all going through the same unfortunatly, but you can atlease know that is is labs and you are not the only one. So sorry to hear about your husband and ex husband, i am 40 and have lost both my parents and believe me although you will never get over it it will get better...I believe stress contributes so much to labs so maybe as you are down it hit you then..where do you work? take care xx I am feeling alot better again probably for a short while though until i feel..oh no here comes that feeling again!!!and panic..i had a crown fit today but my dentist is great even my children skip and sing on the way to see him and for 9 year olds that is great that they dont mind the dentist.. Jessica..totally agree with you..i would love to see how the people who have dropped off the site are...shall we all decide now to stay in touch when we are back to full health.That would be great as you have all been so good at advise, feelings, and putting me at ease....and listening to my rants.. Glora...how are you doing? Like i mentioned earlier it is so hard to lose someone close to you,aswell as my parents i lost an auntie 2 years ago she was like my gran and it is very hard. Sandie..5 years i thought i was bad april 2006 my first dizzy spell and from then on labsssssssssssss!!! do you think we will get better . Does anyone feel this thing coming on when you have had a good few weeks.I feel odd like spaced out to start with and then thats it its stared..i hate it but i do try and keep busy, and as i love my job work does help. Jemmajessica, melissa ..how are you all? Take care everyone Penny xx |
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Im achy again, I have been hit with a virus on the eve of my 2 week holiday, doctor said its going around, Im of the belief that the stress of labs over the last 12 months has completely run my immunity down. Anyone else seem to be more prone to colds and flus since getting this.. DC |
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Sandie - my wonderful friend and spellchecker!!!!!! Do you know, my hubby wanted to look up on the NHS site to see how long I will have to wait for an appointment - no wonder we couldn't find anything - so that's how you spell CAUTERIZED!!! I try so hard to give this image that I'm so intelligent LOL!!!!! Well, Sandie to answer your question, I am now 8 months with this. Yes, I am tons better than I was, but not normal. For me it is the weird head pressure, tightness thing that is a constant and then throw in the swirly head throughout the day. Still, 8 months is nothing. I realise that this is going to be with me for as long as it decides to be with me and I have to accept that. My symptoms don't scare me any more, but it just gets frustrating and worrying because progression is so glacial. By the way, as an aside, what front door paint did you end up using Sandie? Penny - good to hear from you and so pleased you are feeling better. Sounds like you have had a busy week - dentist and half-term! I'm OK - thank you for asking. As you know too well, it is up and down. My recovery is quicker than it was on the down moments, so I suppose that is progression! You are so right - I was very close to my uncle. We all lived together in the same house for years - he, his wife (my auntie) and of course my cousin (their daughter). He still lived with us when Andy & I moved back home to look after my mum after my dad died. Although he was more able then, but he was in his 80s and still needed a certain level of care (meals etc). After my mum died and we had to sell the house, was when he had to go down to Devon and live with his daughter. So, although it is her dad, he was like a second dad to me in many ways. So the stress of all what is going on at the moment is not helping the old labs thing! You are right about making sure we all keep in touch just to say if we have conquered this thing. Will give us all hope maybe!! Jemma - I'm taking a Vogels tincture called Plantago. It is supposed to be really good for middle ear and lymph gland clearance. Many people apparently take it for recurrent ear infections. Google it and see what you think. I'll let you know how I get on. I don't feel so anxious today, but it is only the morning - I hope not, but considering I'm on an anti-depressant - makes you wonder if that is working. Think I might wean myself of of it just to see. DC - you poor thing. What a run of bad luck you are having. I'm quite sure you are so right about having weakened immunity, but, like you I'm taking so much vits etc I don't know what more to do - other than a relaxing holiday somewhere hot! Are you intending to go away for your holiday or stay at home. We've booked a week at the end of March. Only to the south-west of England in Cornwall. We have rented a small cottage by the sea. I know for us here there is no guarantee over the weather at that time of year, but it's peaceful and tranquil. The cottage is on a cliff overlooking the sea and has a huge picture window. So to sit and gaze out to sea even if the weather is no good, will be lovely! I hope you feel better to enjoy your 2 weeks. I don't know if you are a person to take holidays, but just a change of scenery and to totally relax - no phones, email etc - just make you unwind a bit more and regain some positivity. Take care. Well, another day - doing more clearing out of cupboards and loft space today - getting rid of more junk. That for me is quite therapeutic - just getting rid of stuff and having more space in the house (probably to fill up with more useless things as I'm sure my hubby will say)!!!!! Take care all. Speak soon |
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Sandie - sorry forgot to answer your question about the drops. I used Betnesol for 6 weeks and then went on to a nasal spray (can't remember name, but similar to Beconase) for another 6 weeks. I finished this medication last November. Then I had intermittent nose bleeds. Why I think it was related to the drops, is because when I went back to using them or the spray if my nose felt blocked only a few hours later I would have a nose bleed. Because I had my nose cauterized (!) about 20 years ago, I'm sure the lining of my nose is quite thin and susceptible to meds like steroids which is known for its skin thinning properties. Hey ho - just another little thing!! Gloria x |
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I forgot to say, my dentist appointment was at 12 yesterday so i had a small pastie befeore going.Last night i fancied a glass of wine this i did but oh dear...as i had not eaten it went straight to my head i lay on the bed feeling so rough and today i am still not to clever...This feeling is almost asbad as labs as i never get drunk and i am mortified i did after one glass!!! I steamed this morning and my nose is blocked again, heady and headache which i dont normally get, so i think i got abit of everything going on. Wether here lovely penny xx |
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Hi everyone Can you believe we have snow again in the North East of England? Not much but it makes it hard to walk and I still have problems with my balance if I am not on normal ground. Gloria, 8 months in now for you. If you still had your job do you think you would have been able to go back at this stage? For me from the day of my first massive dizzy spell it took me about five months to start feeling better, the anxiety kicked in at about three months in and was over by then, and the balance problems started at about three months in as well. I went back to work six months in but I was nowhere near recovered. I forced myself to go back and I remember feeling so bad at work,all I ever did was go to work from 9 til 5 and have tea and go to bed. I only worked three days a week but it was awful. I thought it had all gone about nine months in as I felt really good and this continued for about three months til it all came back again. And that's the way it's been for me ever since. Good days, bad days, good weeks, bad weeks and so on and so on. Anyway, Gloria, I can just imagine you googling 'quarterise' and coming up with nothing, that is so funny! As for the nasal spray - I've been using Beconase and now Nasonex for about a year now with no problems. I would like to stop using it but I do feel it helps to keep everything clear and my asthma has been better since I started using the Nasonex (I have post nasal drip and it was making my asthma worse). I have used a Vicks Sinex spray for years and years every night so that's probably why I have sinus trouble now! I'm going to have a look at this Plantago stuff - how do you come across all these things? As for our immune systems - I take a very high dose of Vitamin C as it helps to absorb iron better (on a large dose of that every day), and I still catch colds and viruses! Makes you wonder why you bother doesn't it - lol! My door is a lovely cream colour which I would say is more of a pale yellow - it is so nice - I love it. I will put another coat on when the weather is a bit warmer but my husband says I should leave it alone in case I have a repeat of last year! Penny, I don't know if I will ever recover completely from this - but you know it could be a lot worse. You just kind of accept what has happened and it does get more bearable. When I relapse now I know I am going to get better again whether it takes two weeks or six months. Even between relapses (I have at least two every year) I still suffer but my symptoms are milder but I am still able to do things (with the help of my Stugeron!!). DC - poor you, suffering again, I for one have suffered more with colds, viruses, allergies etc since I got Labs. For god's sakes I got the mumps last year at 48 years old and I had it when I was young - beat that - lol! Even my GP thought it was hilarious! Anybody watch Eastenders last night - the live episode? Most excitement in our house for a long time - lol! Take care Sandie xx |
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Hi Penny, So understand how you are feeling. I did similar the other week. Feeling so stressed with everything, I thought blow it I'm going to have a small glass of wine. Can't be done can it?! A couple of sips and makes me feel as if I'm in the first days of labs. Awful! Maybe we need to 'break ourselves in' a couple of sips daily? Weather here just outside London is great today but very cold. Have just finished clearing out the loft. Hubby & I have been clearing for about 4 hours now and my head is started to get all swirly. Up and down stairs, bending, lifting - all good VRT I suppose. Anyway, rest time now. Hope you feel brighter tomorrow. Love Gloria xx |
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Hi all, Just checking in. I use a nasal spray everyday too. Veramyst is the name of it. It really helps, but I hope I don't have the same problems as you did Gloria! LOL I have been feeling wonderful lately. I hate to say it, as I don't want to jinks myself! I get a bit swirly in the head if I am hungry or tired. Both easily remedied. I just hope not to relapse. You know how easily it can hit. Have a great weekend! Melissa |
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Hi everybody, this site does wonders for me, it's so nice to know that I am not imagining my symptons, but not nice that you are all suffering the same. Sandie - I was so interested in your post about returning to work as this is something I am hoping to do in the near future. What kind of work do you do and do any of you drive to get to work. If so how do you feel after doing a day's work, are you able to drive home ok? This is one of my worries that I will be able to get there but after working will be unable to drive home. Gloria - whereabouts do you live as I live just outside London in Essex. Penny - thank you so much for the welcome. DC - what kind of work do you do and do you work full time? I am enjoying, probably not the right word, reading your posts, you all sound so positive. I guess for me the thought of having this for years makes me feel frightened and depressed, I really dont know how any of you has coped for that long. I got an appointment today to see the ENT and its on the 19th April. That will bring the time I would have had this thing to 7 months. Has anyone found their GP to be supportive. As I've said before my GPs are absolutely useless and I feel that they think I am a hypocondriac (spelt that wrong I'm sure Sandie)but if they go back through my records they would see that in my entire life, I have been lucky enough not to need treatment for anything. Today I went out for the first time since Wednesday, my brother came over and took me to Homebase because I wanted to get a new toilet seat. I don't know if anyone else feels the same but as soon as the front door opened and I step outside it's like, WOOOOOO ... the outside just hit me. I'm sure it's the difference in the closeness of everything inside and the vastness of the outside. I noticed that once your out for a while things do seem to settle down. Same with Homebase, once I was inside for a while I just seemed to get used to it. I wish I could just take this anxiety away. Take care everyone. Love Shirley x |
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Hi Shirley, I used to work in a Garden Centre mostly on the tills. I really loved working there and it was such a nice place to work but I found it very tough. I was on my feet all day and if we had a lot of customers and I was on a till it was an absolute nightmare. I would have to keep coming off and take a break. (That didn't really make much difference because standing or sitting I feel the same). If I was having a really bad day I would always be 'hiding' somewhere, not skiving but doing something that didn't make me so dizzy and would dread being called over to go on a till. I'm one of these people who doesn't say how they are feeling (apart from on here!) and I would always go on and on until I nearly keeled over. Then I would be sent home in a terrible state and then would be off for up to six months recovering. The business was family run and I really did feel that I was letting the side down as they really couldn't afford to have an employee like me on the books. I felt sorry for them! So, after my last relapse I made the decision that if I was ever going to have a chance to get over this I would have to give up my job for my sake and for theirs. They were really good and said that if I do ever get better my job would be open for me! Regarding driving, I have not driven a car for about 12 years which was long before I got this condition but lots of people do drive. I don't think I ever could though as I would, like you, feel too scared. Oh, and my sister has lived in Essex for a good few years now. We are from the North East (and I'm still here!). She has just moved to a brand new house on West Mersea - do you know it? She's only been there since just before christmas but it looks so nice. And, no Shirley, GPs really don't know much about this condtion. My GP at present is really nice and I can talk to her easily but I don't think she knows much about it! Like you, I was very rarely at the doctors before all this and indeed after the first year or so when you realise that you don't get any help at all, I have only ever visited for sick notes. Also, the feelings you are having when you go outside are completely normal with this condition. When I used to go out in the early days it seemed like the ground was actually moving for me. It was so awful. If I looked over the fields they would 'bounce' even when I was standing still. It does make you want to stay where you feel better but you must get out as much as you can. Even if it's a walk to the post box and back. This is what I do now - when I have a relapse I get myself out, just for five minutes at first and gradually build it up. You will feel rubbish and if you can have someone to help you all the better, but challenge yourelf to do it and you will feel so proud of yourself. Do you have problems in the shower? - that was the worst place for me - I would make my daughter sit in the bathroom with me in case I fell over! Shirley a lot of these horrible feelings you have are ruled by fear. I used to be terrified that I would fall over because my balance was all over the place and I would be hanging onto the walls as I walked around the house but I have NEVER fallen over. Don't get me wrong it still all terrifies me when I get a relapse but you do get less afraid of it. Oh and by the way it's hypochondriac - LOL!! Gloria - have had a quick look at the Vogels Plantago - would be very interested to see if it actually works - keep us posted! Take care Sandie xx |
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Hello sandie - thank you for taking the time to talk with me. I don't think I am going to have any choice in the matter of returning to work, I will have to go back for financial reasons, I guess I am just stressing over the fact that I might not be good when I'm there and then have to return home. I don't know whether to wait a month of two and let my money run out or just bite the bullet and return. My boss has been understanding but I think there is only so much understanding he will give me. You are right with it being fear that is stopping me doing things. I'm just so frightened of going out on my own and I know the longer I am leaving in the more anxious I am about it. I am having a really bad day today, not with the imbalance but with anxiety and depression. I have had a crying day today, and just feel that I don't want to be here. I just feel that everything is getting on top of me and there is no one, apart from on here, that I can talk to about it. My family just get upset and say the odd "oh dear", my kids - well I just don't want to put this on them as they have their own problems to worry about. Sometimes I just can't cope with everything. I miss my husband terribly, he was always someone I could talk to and was always understanding and supportive. I just feel so alone. My son, bless him, bought me some flowers as he left me crying outside in the garden as I just couldn't stand being in the house, or anywhere in fact. He asked me if I wanted to go with him to Tesco but I just couldn't muster the energy. And also didnt look too good with all the crying - didn't want to ruin my image LOL!! Sorry for the moan, I'm crying now typing this, lucky I can touch type as can't see the keyboard - or the monitor. God I used to have such a great sense of fun and humour - where has it gone !!! Keep well my friends x |
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Shirley I can really identify with how you feel. I have had so many tearful days wishing i was not hear and thinking life isnt worth living. I try to think that i will get through it and i have laughed and had good times despite this. It is always hanging over me and stopping me doing everything i want to at the moment but so many people on this forum and other forums say it does get better and if it is labs the doctors say it does get better so we just need to hang onto that. I know it must be so so tough for you without your husband. I sometimes feel that the only people who really care about me are my boyfriend and my mum and i dont know what i would do without them. I have other family, friends and work colleagues who show some interest in my condition but only my boyfriend and my mum REALLY care about me. This site is so helpful because it is so reassuring to talk to other sufferers so you dont feel like you are going mad. When i have thought about ending my life i have always thought that i cannot do that to the people who care about me and for all the other people out there who suffer worse than us, also i think about my grandparents who are no longer alive but who were always so proud of me when i was younger and i just think how it would have broken their hearts if they thought of me doing that. My granny lived with parkinsons disease for the last 28 years of her life and she never complained once and gosh how she must have suffered. Sorry to go on, but i hope tomorrow is better for you and please hang on and keep fighting, WE WILL GET THROUGH THIS!!! WE WILL!!! xxx |
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Shirley you poor thing, i can too relate to your tearfullness.Many days i feel like that and sometimes for no apparant reason, i think it is to do with being scared aswell.Lke Sandie i tend not to show peolpe how i am feeling and just try and get on with it.Thats when my tearful moments start when no one is around and i think oh my god what if i have got this and what if i have got that...stupid isnt it?? Today has been an odd day for me up and down and again foggy head, drifting off and pressure top of my nose and side of my face and ear still bunged up!!Its the foggy/muzzy head i cant stand and thinking about how long this is going to last. Work tomorrow aagh..i dont mind i love my job and it seems to take my mind off things, twins are back at school after half term. Hope we all have better postings tomorrow!! I have still not heard from the stress councilling people i called last week after i had seen the dr, i will let you know if it works when i start going. Sandie..i stopped having a shower as it seemed everytime i was having a shower i was having a worse relapse and i thought it could have been water getting in my ears..not sure though. Take care all Penny xx |
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Shirley, you have got to believe me that this does get better. I have been where you are now and I have cried many tears - tears of fear, tears of frustration and tears of happiness when you do have a good day! Shirley, you have had this for appx 4 months now and if you read my recent post you will see that I had the same symptoms as you are having at around the same stage. The anxiety was awful and I felt the same - I would be just sitting not particularly doing anything when that awful feeling would start creeping over me and I would know that the anxiety was starting. I would want to be anywhere but where I was at that moment and that is so hard to understand as you are already in your 'safe' place. I suffered for a few months with that and Shirley it did go away and has never returned even though I have had many relapses with dizziness/balance since. It must be so hard for you not having someone who you can talk to. How old are your kids? My daughter was 8 years old when I started with this - she was and still is my rock. I have two older kids at Uni too and they are brilliant with me too. Your son, bless him, how sweet was that? You really do need to talk to one of them - open up to them and you might be surprised at how much they really do care! This will not be a burden to them - they love you and will want to help even if it is just to listen. The trouble with this thing Shirley is that you will probably look normal to everyone else and it is hard for them to understand what you are actually going through. Get them to have a look on this website and the website www.labyrinthitis.org.uk - it is full of information for you and for them. Jemma you are right, it is only the ones that are very close who really do care - they are the ones who know that you are suffering. And of course, your true friends but other people do just make the 'ah, poor you' sounds and get on with their lives!! As for going back to work, you do not seem ready for that, I would take as much time as necessary to get back to a point where you really do feel better. Jemma, Shirley, you actually have me in tears when I read your stories. Please - no more talk about ending your lives. I have been there and I know exactly how you feel but please believe me - you will both get better. You see and read what I get up to now so you know there is light at the end of the tunnel! I have suffered with this and I have had to give up work because of it but I take pleasure in the simple things of life now and I thank god for what I do have. Ok, so it is quite bad at times but I remind myself that it will and does get better. At the moment I am more concerned about who is going to give me my asthma meds when I am old and grey - now that does concern me - lol! Today I'm not too bad apart from the odd 'falling over' sensation that keeps hitting me. It only lasts a second or so though! My sinuses are a bit blocked and my right ear (always the right) is so itchy today I want to poke it out of my head. Penny, I have that pressure at the side of my nose/face too. And spots!! Three huge spots - don't know that is happening to me but my daughter thinks they are hilarious and is taking great pleasure in pointing them out every five minutes! She too, has gone back to school today - aaah - peace! Penny, you will laugh, but when I first used to go in the shower with this I used to bung my ears up with cotton wool and vaseline to try and keep the water out. Take care everyone and keep smiling - life is tough but you gotta be tougher!! Sandie xx |
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Hi everyone, Sandie without you explaining everything we would all have lost hope by now I think! Shirley - please try not to get so downbeat - I know it is easier to say than do. Especially for you as you are on your own, but even if people do have close family and friends, they don't understand fully what it is you go through with labs. It is not just a matter of feeling dizzy, but there are so many associated symptoms like anxiety, depression, aches and pains etc. which when we all look fine on the outside, makes it harder for others to think you are not well. I have a lovely GP, but she hasn't had the experience of enough people with labs to know what all the additional symptoms are and, therefore, cannot relate to all my moans and groans about muscle pains, head pains and fatigue. So I give up now. I drive, Shirley and have driven for most of the time I have had labs (except for the first couple of months when I felt so unwell). Like Jemma on here, driving actually makes me feel better. We can't understand why. My ENT consultant said it is because you are concentrating more - I'm not sure if that is why, but I enjoy going out in the car. I live on the other side of London in Middlesex near Hampton Court. Many many years ago I lived in Bishops Stortford for a while and had friends in Saffron Walden. Loved all the little villages around Essex -and the country pubs! I, too am feeling really off again. I think it was all the bending up and down to clear our loft on Saturday. Like Sandie, I too have given up work. I was only part time as I've semi-retired, but before all this happened was very young at heart and active. Although I do feel tons better, but still not 100%, I seem to have lost the spontaneity I used to have - maybe one day it'll return! You must keep positive Shirley - for some of us it does seem to take a little longer to get rid, but that doesn't mean to say it will not go and you start to have, soon I'm sure, periods when your symptoms become a little less and then for a few days - it is slow and gradual, but you will get there. Even though it is 8 months for me and not without symptoms of some sort, but I have been functioning every day doing pretty near normal things for quite some months now. Anyway, send you a big big hug. Penny/Jemma - hope you are battling well?! I can't believe my ear and muzziness has re-appeared the last couple of days. Maybe it was the glass of wine I succumbed to on Saturday night (like you Penny - needed a tipple)!! Love to all - let us keep the faith now!! Onwards and upwards! Gloria xx |
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Shirley, please, please, please don't think about ending it all! I know how you feel. At the 3 month mark my anxiety kicked in so bad. I was awake for 3 straight days!! I could not sleep! I cried everyday! I have a wonderful husband and a supportive family and friends, they still didn't understand what I was going through. I looked normal after all. I am at my 9 month mark now. I have fought and clawed my way back to health. I have gone to countless doctors, had an MRI, CAT scan, blood tests. Shirley, start fighting! Get good and mad at this labs and fight as hard as you can to get back to "normal". I took up running everyday just to get the anxiety out of me. Eat healthy, avoid caffeine and alcohol (for now at least). Try yoga or pilates. Take control of this thing! DO NOT allow it to take control of you. You will suffer with it. God I hate it! I will say that I feel 100% normal most of the time now. It was a LONG road to recovery. It is still so painful for me to think back to how I felt this past summer. I don't even allow myself to go there with my thoughts. You can and will get better. It is not a linear recovery process. You will have many ups and downs in your battle. I still don't know when and if I will be hit again with symptoms. I NEVER take my health for granted anymore. Please try to hold on for a little longer. I did have to start taking Zoloft (anti depressant) I could not have done it without it. I am so proud of all of you on here that battled the anxiety/depression without the help of an SSRI. You are amazing!! Gloria, I had not one, but TWO glasses of wine the other night!!! Whoo hooo!! That is a big feat as you can well imagine. I felt fine too!! YEAH!! I have to enjoy the times I feel good. You know what is lurking around the corner. That time of the month kills me!! Everyone, please keep the faith! Please fight hard to get through it all! You are all amazing, strong and healthy!!!! Go Sharp Blue Crew! (my small attempt at boosting your spirits) Melissa |
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Hi all, Head been very whoosy again today, ears still blocked and top of nose seen to have headache too.I am now going to steam ( which does nothing fo my natrally curly hair that my friend straightens every week!!!)Kept waking up in the night just dreaming of rubbish.anyone else like that.Must be so much on my mind i cant relax. My car was due to go to the garage tonight as it wasnt registering any petrol, but it broke down lunch time...my work collegue bless him drove me to get petrol to see if it was that then bump started it and followed me to the garage.the car is only 2 years old..i too love driving so i am lost without my car. I am going to watch the new drama tonight married single other which looks good, anyone else fancy it.Hope it takes my mind of this headiness. I think the headace ( as normally i dont get one only at the time of the month) could be my new crown, i find i am clenching my teeth alot with it. Shirley..please no more talk of ending it, come on here anytime we all listen, i know its not the same as face to face but i feel i could type and go on forever..so shirley be strong and take carexx Off now to get my head under a towel in the bowl and dream of how my porche is doing in the garage without me....ha only joking i mean proton!!! Love penny xx |
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Hi everyone. Just popping on to say that I had a call from the VRT clinic today. Someone is supposed to ring me tomorrow to set-up an initial consultation and assessment. Bad news is they told me that vestibular psychology services are "out of network", which in American healthcare speak means "it's expensive and your health insurance won't cover it." So the one thing that could probably benefit me most is probably not within my grasp! Between that and reading an article online about vestibular disorders causing permanent cognitive impairment, I am feeling super depressed now. Thank God it's the end of the day and I can go home from work. Keep well, everybody! |
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Jessica, My plan doesn't allow me to go out of network either. I ended up paying a fortune for therapy. How about vestibular rehab therapy? Does it cover that? Not sure what vestibular psychology is. Can you explain? Melissa |
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Hey Everybody its me again Week 14 - So its Week 14 and they have thrown every test in the book at me MRI, caloric tests ENG im still waiting on the results of the latter two but the MRI was 100% fine. IM seeing my ENT in a day and im hoping he will get me onto VRT asap to cure this horrible ailment. Anyways i have something very interesting to describe; i find it peculiar that despite this terrible rocking sensation i am still able to balance on one leg with my eyes closed for 1min on my left and right legs, so i don't think it has affected my balance at all its just the rocking sensation that gets me the most down :(. Although at the start of Labs if I put my legs together and closed my eyes i would start to fall over almost and now i don't even sway so its definitely improving :D If this rocking sensation or pendulum whatever you want to call it disappears i will be 95% as i feel like the brain fog and lightheadedness has disappeared that i had at the start of Labs and i am able to concentrate very well. For the moment im trying to keep as active as possible in my physical cashier job and going to gym to excercise in the hope that it will improve my condition. |
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S - I was always able to balance on one leg without falling over too. It's weird isn't it that you actually get these feelings that you are about to fall over or that the world has moved from under you but you can actually balance on one leg! I did have a test at the ENT where you walk in a line, heel to toe, and I failed that but when I asked if I could do it again because I felt that I could actually do it, my consultant wouldn't let me. I found that very strange too! For me, I would love to just feel the dizziness etc because I could cope with that - but I will NEVER get used to the 'falling over' sensations - they still scare the life out of me! I also get that swaying feeling especially if I had to queue somewhere - I did actually sway because whoever I was with would sense it. That only happens now and again now. Take care Sandie xx |
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Melissa: my insurance covers VRT, but I have a $40 copay each visit. I'm prepared to pay for that. However, they also offer Vestibular psychology and group therapy sessions, I suppose to address the unique anxiety and depression issues associated with vestibular dysfunction. Basically a psychologist who knows exactly why and what we're experiencing on a psychological level with this. Isn't that great! I want to go so badly, but I'm sure it's about $150 a session out of pocket. I don't know if group therapy has a fee, but I might attend that. It's a group of vestibular rehab patients meeting with a vestibular psychologist to talk. Also, they offer a question and answer session with former vestibular patients. RUSK Institute at NYU Medical. I'm dying to get started! |
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S and Sandie, I too had great balance and never fell over doing my VRT exercises. I HATED the rocking sensation, but I HATED the falling over feeling more! Sandie, that feeling scared me too. Every once in while I will sit down somewhere and feel it every so often, like I'm falling backwards. Then the feeling that the floor was moving under my feet came. HATED that too! Now I am better. Bitter sweet news today, my physical therapist decided that I'm done with VRT. I have to agree with her, as I have been feeling fine for 6 weeks now. I'm still a bit scared to actually let go of her. I guess it's a security thing. We all know that this labs can kick in at anytime! Wish me luck! S, good for you working out through this. You sound very positive about all this. Keep it up. Keep the faith! Melissa |
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Hi all, Melissa - sounds all good to me! No more VRT whoopee!! I am due to go to mine in two weeks. Whilst I still have symptoms, I don't think I need more VRT. I don't know what more exercises they can give me. Basically, I have all the routines possible for this plus the fact they have advised me to up my physical activity which means I am at the end of the road with them. So I can't see the point of paying out more money just to be told to carry on as I am!! For me at the moment it is the heaviness of my head and the pressure and tightness across my eyes and back of my head. Anyway, way to go girl! Jessica - although you have to pay for the group therapy sessions, I am sure that would help. Being able to meet others in the same situation and a chance to discuss how you feel, must be very good. Only wish we had similar here in the UK. It would be like having us all here on this site in the same room, sharing our experiences, but then have the advantage of having someone who is qualified to tell you why things happen and how to tackle them. Go for it and let us know how you get on. Penny - how are you today? Like you I'm not that great at the moment. But have been here with same symptoms before, so more of the same basically! What did you think of Married, Single, Other? We watched it - like Cold Feet and the like. Quite good, although I find Lucy Davies a bit annoying! S - good to hear from you. You sound more positive and more active - hope this is a turning point for you! Shirley/Jemma - how are you both feeling today. Our weather down south is YUK! Soooooo need some warmer, sunnier weather to cheer us all up I think! The upwards bit of the onwards and upwards has got stuck at one speed with me at the moment. I'm onwards, but not really going upwards. Please God let that change soon for us all! Love & hugs, Gloria xx |
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Hi everyone Melissa you sound like you are pretty much recovered now which is brilliant! I do hope it lasts forever. I was very down yesterday with life in general. I have been off work today so not as bad and less tired but still dizzy of course. Have been chasing round after my VRT. I had just phoned someone about private sessions and she sounded good but then a letter has come in saying I can start on the NHS on 16th March so now I may as well wait for that before I start paying anyone privately. The woman I spoke to today did say that because of my age she would expect me to get back to 100% and she also asked if I get migraines because apparently she said people with the migraine gene find it harder to compensate which is why she thinks some people suffer for longer with this. I did not think I was a migraine sufferer until recently when I looked up about those weird little visual attacks I get occasionally and found out they are visual occular migraines (think I mentioned this before) so I guess I am disposed to migraines and Gloria I know you are too! I personally have a theory that many people who seem to take longer to recover with this have left sided ear damage. I feel mine is left sided and I know both Ilia and Emma of the labs website also were left sided. I have the falling sensation and swaying feeling as well as swirly head and trancy feeling at times. Horrible! My anxiety is still in the background, not quite as bad as last week but I do find my heart is racing and I go all shakey for no reason. It just seems to happen suddenly often without me consciously feeling worried. Quite often moving about can set it off but sometimes when I am sitting watching tv or lying in bed it happens and obviously any other stresses in life can make it worse. Can't believe all these people finishing their VRT and I haven't even started mine yet. I do hope it brings some relief anyway. Take care everyone xx |
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Hello everyone..another head swimming day for me with top of nose pressure and ear pressure...god when will it go.Sort of headache too but not too bad.My left eye also has a nerve than annoyingly is flickering intermitantly which is so annoying. You all keep talking about VRT and i am not sure what it is, can you tell me. I should have asked before. Gloria..married single other..hmm not sure bit boring i thought, mayne next week will improve. I too tried beconase nasal spray but got nose bleeds with it so i havent tried anymore.How long did you say you have had labs gloria, and how did it start with you? Shirley...hope you are ok. Good luck Melissa!! Penny x |
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Well they just called to schedule my first VRT appointment for Monday, 1 March. I should be delighted, but that also happens to be my 30th birthday! Never would have imagined that one day I'd spend such a milestone b-day in vestibular rehabilitation, LOL. |
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Hi all, I was just wondering if any of you get hiccups after eating, drinking or just moving, not lengthy episodes just 1 or 2 hiccups |
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Hi Do any of you suffer from hiccups when just eating drinking or moving...not lengthy bouts just a couple of hiccups |
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Hi all, Well of course last night I had a bit of a swirly head. It didn't last long, but a bit longer than I liked. Again, you know what is right around the corner for me. That is a trigger. I made it through last month without anything. Maybe I can make it through this month too. Cross your fingers! Jessica, Happy Birthday!!! Good luck with VRT. I researched a VRT support group here in NJ and came up with nothing. Holy Name Hospital in Teaneck used to have a program, but it has since closed. Tell us how it is. Shirley, Sandie, Penny, I too get eye twitches in my right eye. My right ear was the one that had labs. As a matter of a fact, my eye was twitching so bad for a whole day, a few days before the onset of all of my symptoms back in May. I was scared about it too. Who knew what it would bring! I guess it has something to do with nerves. Keep up the faith everyone on Sharp Blue Crew! Melissa |
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Jemma - that awful feeling you get even when you are sitting or lying down was true of Labs for me too. I used to feel like I was falling over even if I was sitting on a chair or lying in bed. You can be as still as anything and actually feel like your balance has gone. I think it is probably because your ears are sending thousands of messages per second (or maybe it's hundreds) to your brain and the brain can't make any sense of these messages from the damaged ear. These messages are being sent constantly so that's probably why we never get a break! The racing heart and the shakiness are all part of anxiety. Anxiety is controlled by something (a nerve?), which is very close to the inner ear and it makes sense that these anxiety attacks are random and even occur when you are not worried about anything because of all the chaos that is going on with your ears and your brain. Penny, VRT is a programme of exercises designed to get the brain to compensate. They can actually make you dizzier but this is good as it gets the brain used to the dodgy signals it is receiving from your inner ear. You will be given them by the ENT (eventually) but there are exercises you can get from the internet. With or without VRT you should recover but they reckon with VRT you should recover quicker. You usually have to do them a couple of times a day. Have a look at www.healthboards.com and go to the inner ear disorders board. Hope it's ok to post this Rich? There is loads of stuff on there and if you look in the 'sticky' which is the first post on the board titled 'information archive' you will find loads of information and some VRT for you to try. Jessica, happy birthday for Monday! Take care Sandie xx |
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Hi everyone and thank you Penny, Sandie, Melissa, jemma and Gloria for your response to my last message. I am sorry if I have worried anyone. Melissa thank you so much for the kick up the bum, I really needed that. I am so jealous that you and Gloria have had glasses of wine .. oh how I miss that. I have taken it upon myself to book up some private VRT. The lady I spoke to seemed really knowledgeable and said she works for Whips Cross hospital with another consultant and also does talks on the subject. She said she will examine me and work out which exercises I should do and she spoke about the Cawthorne Cooksey exercises. She said that there are about 30 of these to do but only 2 might relate to me and that some people who do all 30 will end up dizzier as the others will not work for them. Seemed to make sense. She said that once my brain gets use to the exercises she gives me she will then give me ones that are more difficult. It does worry me that these can make me dizzier until my brain gets used to them but I am having a dizzier time at the moment since my Sunday episode. Seems like I have gone back a bit so hope it doesn't last. Jemma - you have worried me about the left sided ear damage taking longer to recover, mine is on the left side .. oh dear !! Take care everyone
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Oh sorry Shirley I dont want to scare anyone! It was just a thought about the left side, in fact the neurologist said it is possible i had a bit of damage to both. I feel its the left though. I have noticed that more people seem to have left sided damage but i could well be totally wrong. Please dont worry and i do hope the VRT helps. At least you are getting it early, I am at 10 months and not had any yet. Hope everyone else is ok? Jemma x |
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Today i feel very very off balance, worse than i have in along time.i sit and my ears seem to be filling up pressure at the top of my nose and i feel asthough i am moving..thats the only way i can describe it..maybe you are right Gloria my eye nerve may have been the start...again.. I asked my dr about the mri i had 4 years ago as i was so scared this was something else again the way i was feeling today..i said would anything have changed since i had it..and again for probably the 4th time now she said to me..no and you havent got a tumour!!!! she seems to know what i am going to ask and that was on the phone. Mine to is the left ear, left eye and left side of face cheek bone too which i get the funny feeling in. I have got lots going on at the moment with my hubby and i am very very stressed with it all although i do try and stay calm and dont think i am stressed i am obviously very stressed which is not helping my labs. Very fed up tonight sorry all, swometimes i think i am loosing my marbles with this bthing i hate the feeling. and my nose is running too.Maybe i got abit of cold... VRT who refers you for it? Love to all from a 39 yaer old who feels 79 with this labs today!!! Penny x |
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Jemma I should have said that I am paying for in privately as I havent been offered it on the NHS and I am not seeing the ENT until the 19th April. I just cant wait that long. Penny so sorry to hear about your symptons .. I've had a cold too and that's what I am putting my returning symptoms down to, hopefully it will go soon for the both of us. I truely sympathise with you over the anxiety, its so hard to stop once it starts. Try to stay strong xx |
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Penny, I'm 39 too and feel like an old lady when this s... hits! Today I felt swirly headed when shopping at the mall. Does anyone ever feel like your head are soooo heavy? Almost hard to hold up at times? Am I the only one with right ear damage? I know it is my right ear, as I felt small tinges in that ear and have had fluid in it every morning now since this hit me. I wonder where the fluid is coming from? Any ideas? My ENT said it was just sweat. Well why wouldn't both my ears sweat? How come I never had that before labs? I'm not buying the sweat theory. Anyone have this too? Shirley, you sound much better! It's okay to get down about this sh.t! Just don't ever give up the fight! It is going to be a huge battle. One day up, the next down. Awful really! Just perservere through it all, it will get better. Melissa |
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Thanks for all the nice pre-birthday wishes, everyone! My VRT institute just called to say they've had a cancellation tomorrow, so now I don't have to go on my birthday. Hooray! Melissa: now your VRT is over do you have to keep up the exercises at home? Jemma: I have left-sided labyrinthitis too! Then again, I'm deaf in my right ear anyway, so I wouldn't know if that one had been affected too. Just a couple of thoughts I wanted to share today that I hope make people feel better about recovery: The first is that when I had an accident as a baby and lost my hearing in my right ear, I suffered permanent nerve damage. I was already walking, but I couldn't hold my head up or walk. My eyes just rolled in my head. I don't remember it, but I assume I couldn't tell which way was up or down. The doctors told my parents they didn't know how long it would take me to learn to hold my head up and walk again, but I did it. The nerve is still permanently damaged, but I made a full recovery. We are all experiencing this same type of damage from the labyrinthitis (not even as severe), so I know we will all recover in time. The second thing is that Emma and Illia's website is so fantastically full of information to discover when you're first diagnosed with this condition, but it's also intimidating because they were both extreme and long-term sufferers. Their cases are so very, very lengthy. Your chances of suffering like that are statistically unlikely. Think of it like this: if you read product reviews of something before you buy it, and 25 people have left negative reviews, that's not accounting for the possibly hundreds or thousands of others who had no problems and therefore felt no need to complain about it. I believe we're all going to be fine in time and that we should do whatever it takes to get there: VRT, meds, psychologists, support groups. We'll get there! x |
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I haven't posted in a long time, but I wanted to give some of you hope. I think I am fully recovered. My labs started after the flu March 2009, and was never that severe. I had bad head symptoms for 5 weeks, then those lifted. I had wobbly legs and moving ground for months. I developed bad anxiety at about two months into it and that led to some psychiatric problems. I know that at 7 months I felt 95% recovered but would still occasionally feel wobbly and off balance. I was on some drugs that made me a little spaced out and dizzy so I never knew if I was getting better or not. I am almost off the drugs and my balance seems fine....so 7 to 11 months for a relatively mild case. I never think about the labs now, except sometimes I feel my peripheral vision does not track moving objects very well. Hopefully that will improve too. I want everyone on this site to get well. This is an invisible illness, partly because it is relatively rare and partly because it is hard to describe the symptoms to other people. Oh, and I still have some tinnitus, but it rarely bothers me, it is not that loud anymore. Don't give up. I recovered, you will too. I can run and grocery shop and go for car rides just like I used to. :) |
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So i saw my ENT today and got the results of my caloric and ENG back, apparently there is nothing wrong with my labyrinth or my inner ear / ear or so says the ENT that diagnosed labrinthitis 3 months ago ... What the f*** honestly now hes retracted his diagnosis and is convinced that it is nothing to do with the ears and must see a neurologist :(. He said that if i had labrinthitis it would of completely wiped out my left sided labyrinth but as it is still working i didn't suffer labrinthtis, this doesn't make sense. I know its inner ear because i still get pain in my left ear and all the typical labs symptoms i.e terrible rocking/ swaying while still ;(yet he doesent want to listen to me and i even asked if he could explain if its not my inner ear why did i wake up with terrible true vertigo that first morning of suffering in November ;( |
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Hi all, Melissa - hope you are going back up to feeling better. Just when you think you are on the upwards road to full health - wham! Hopefully, it is just that time of month and will only be for a couple of days. Jessica - Happy Birthday for Monday. Hope you feel much brighter and have a good time on your special day. Good luck with your VRT. Penny - so sorry to read you are feeling so low. It certainly doesn't help if you have other worries on your mind as well as coping with labs. I can't think too much into the future at the moment and take each day as it comes. I am so fed up with not feeling 100% and trying to cope each day as if everything was normal - it is EXHAUSTING. My labs is all to do with my left side and I too get that eye-twitching thing on my left eye. It is so annoying - I think look like that mad French police inspector in The Pink Panther whose eye kept twitching when he was in a rage LOL!! Shirley - pleased you are going to start VRT. Don't be alarmed - you really do cope with it fine. It is quite amazing how the brain quickly adapts to what you are doing. Jemma - hope you are feeling a bit better. I, too have felt so down again this last few days. Maybe, because I had another bit of a relapse and like Melissa have this heavy headed feeling which is causing my muscle strain to my neck like nothing else. How is your neck these days? Interesting, too to read about those with migraines - aren't we the lucky ones Jemma?!!!!!!! Anyway, just to say again I won't be around for a few days. Going down to Devon for my uncle's funeral tomorrow and staying with my cousin over the week-end. I do hope it stops raining and will be a bit brighter. These occasions are gloomy enough without the addition of gloomy weather. Anyway, take care my Sharp Blue Crew! Love & hugs, Gloria xx |
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Hi Melissa, I have never had a diagnosis as to what ear is affected for me but I think it is my right ear. I always get pain, flutterings, pressure etc in that ear. Today it is bugging me again and I feel a bit woozy headed. Strange thing, last year (Aug) I stopped using the beconase nasal spray because of the steroid link and started on Rhinoplast but within a day I felt weird, yesterday I used the Rhinolast again and today I feel weird. I think I'm going to be on these steroid nasal sprays for life. Anyway about the ears, I am always poking my finger inside my right ear and my GP says my eardrums are quite scarred! Jessica your childhood accident sounds awful - I am so glad you recovered from that. When I was about 5 years old I had my adenoids removed as they were affecting my hearing and also throughout my childhood I never went on swings, roundabouts etc as they always made me feel so ill. It makes me wonder if I have always had something wrong with my ears/balance. I am also one of these people who can't stand heights or standing at cliff tops that sort of thing. KC - lovely to hear from you and hope you never have to suffer again - long may it last xx S - don't worry too much about your diagnosis at the ENT - they are numpty's!! Almost everyone who has Labs has normal test results. They cannot tell 100% if you have Labs until they do an autopsy after your death - the inner ear cannot be seen on MRI and the tests are often unclear - they can only go on symptoms. Don't know why they bother with all the tests in the first place! My diagnosis was Vestibular Neuronitis and all my test results came back 'normal'. They said it was VN (which has the same symptoms as Labs so most doctors call it Labs anyway), and this was because I had continuing balance problems and they said it was probably because the virus had damaged my balance nerves just outside the inner ear. It does make you so mad doesn't it - you know what is wrong with you and there is so much information out there but do these doctors actually look into any of it - I don't think so! Gloria - thinking of you xx Take care everyone x |
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Jessica, I do hope that you are able to get to your VRT appt today. It is snowing pretty hard now. You sound very positive. Good for you!!! I think it is a matter of taking your your health into your own hands and standing up to fight this monster. I am so sorry about the accident you had as a child. What a way to start out! At least you don't remember feeling dizzy. I have read that accidents, even from years before, can cause vertigo. Google cervical vertigo and you will some info on it. I wonder if maybe yours is just a flair up from when you had the original accident. Gloria, I feel fine and only had a brief moment yesterday when I was on here typing. Today I am okay. It is snowing here and the barometric pressure gets me a little. All in all, I really do feel fine. Keep the faith! We are all fighting hard! Melissa |
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Hi Melissa. I am off to my VRT appointment now. The snow couldn't stop me! I've been waiting for this day too long. :) As for my vertigo, it's definitely labyrinthitis in my "good" ear, not a flair-up in my deaf ear. I know because this all started with a cold. I woke up one morning with a sound like a motor running in my "good" ear. Between that and my deaf ear, I could hardly hear myself speak. The temporary deafness was from inflammation in the inner ear. Been dizzy ever since. Wish me luck! |
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Jessica, good for you getting there! How did it go? By the way, to answer your question regarding doing VRT on my own. I started VRT in October. So that is 4 months of VRT. She didn't mention to do it at home. However, I haven't even been doing them at home! LOL If I feel dizzy, I know what to do. Good luck Melissa |
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VRT went well yesterday, although I had to hike across Manhattan in blinding snow and was soaking wet when I arrived. My first thought was I was amazed by the variety of people there with vestibular problems. From young, healthy-looking men to old, frail-looking women. My therapist was really nice and explained all about the inner ear to me before having me perform a series of tests. I did very well at some and quite poorly at others. She told me that 90% of physical therapy success will be practicing these exercises at home. She gave me thing to put on the walls in my house and balance exercises too. Wants to see me twice a week, but no way I can afford that at $40 per session. That would be $320 month for the next several months. Plus the costs of my monthly ENT check-ups? No way. I would go every day if I could, but once a week will have to do. The good news is she told me "recovery can take a while, but you won't be dizzy for life." Yay! Have a good weekend everyone! :) |
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Jemma- Funnily enough my Left ear is my labs ear as well so maybe your theory is right about people with left sided labs taking longer to recover :*( |
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Hi everyone, Am back after a fairly exhausting week-end, but successful - if you can call a funeral that! The weather, which had been awful - so much rain - finally ceased and on Friday, the sun shone and was truly spring like. This made the whole thing so much better to handle. It was a great celebration of his 90 years rather than a gloomy, sad occasion. I have been troubled the whole time with such horrible neck, head muscle spasms it is driving me mad. I had bad imbalance and dizziness last week, but this week am left with very tight muscles. For me I think this is part of the aftermath and the brain still not connecting to everything. I'm having a physio massage this afternoon. She is a person I was introduced to and she does home visits which are half the price of my physio that I usually see - so we'll see how that goes. Anyway how are you all doing. Jessica - you sound really positive. The thing you pin on the wall? What do you do with that? Penny/Jemma/Melissa/Sandie - hope things are good with you too. Take care Hugs, Gloria xx |
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Hi Gloria Glad things went well for you. I'm ok, still slightly dizzy at times and ears are playing up but not too bad. The things Jessica pins on the wall are probably just cards with shapes or something on that you look at - nothing spectacular! Take care Sandie xx |
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Hi Gloria. My VR therapist gave me a letter "B" (not sure why) that's about an inch tall, black on a white background, that I pin to the wall at eye level. Then, keeping my eyes fixed on the "B", I shake my head as if to say no for 60 seconds. I can only shake my head at a pace that will keep the letter steady and not bounce, jump or blur. Then I take a small break and repeat the exercise, but nodding my head as if to say yes for 60 seconds. I do this twice a day now along with some balance exercise where I have to shut my eyes and require my inner ear to help me balance. I Keep the "B" on the wall in my kitchen so that every time I'm in there it reminds me to practice. I am feeling really positive, Gloria. I've been having "good days" for the past 4 or 5 days, and my head just feels different this time than it has over the past few months when I've had good days. I'm being cautiously optimistic that I may have turned a corner here. Only time will tell! P.S. Had a lovely 30th birthday yesterday, so that also helped with the positivity :) |
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Gloria, I'm glad that your uncle's funeral was a positive, happy time for you and your family. That is the best way to celebrate someone's life. Jessica, you sound great! Try to add the following to your head turning no: Walk backwards and forwards shaking your head no for 3 minutes. Stand tandem, shaking your head no for 3 minutes, stand on a pillow or piece of foam and shake your head no for 3 minutes, stand tandem on the foam and shake your head no for 3 minutes and finally close your eyes for three minutes, while standing tandem! Those are the exercises I had to do in VRT. Good clean fun! LOL I have been surprisingly well! YEAH!!! I really feel like my brain has compensated, but I am also so scared to write that down! You all know what I mean... I really just a get a wee bit swirly headed in the evening right before dinner. As soon as I eat, I feel fine again. Has anyone flown with this condition? We are flying to Florida in April and I am so scared that it will trigger something. Keep the faith, Melissa |
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Hi all, Jessica - so glad you had a really great birthday. I didn't have a letter to pin on the wall, but with me, I hold a word on a piece of paper and do the head shaking stuff. Then I had to hold the paper and move it from left to right but look at in from the opposite direction (that sounds weird - difficult to describe). In other words when the word was to my right I was looking at with my head turned slightly to the left, but still keeping the word in focus. This I then have to do whilst walking in a straight line (ha!) toe to heel. Depends on how imbalanced and dizzy I feel. I have days when I can do this no problem then others where its like back to square one. Anyway, sounds like you're doing great - keep up the good work! Melissa - sounds like you are definately well on your road to full recovery and are at the winning line - maybe just over it! Has your daughter had her Communion yet? I remember you spoke of getting her dress. For me, I still don't think I have fully compensated yet. Whilst I feel better than I did last year, my head still doesn't feel right. So, have to keep on hoping and praying for my 'release'! I, too, would love to know if flying can put us back to square one (God forbid). We have no plans this year to go abroad, but that is only because I don't feel confident enough to take a risk. I want to feel really well - so maybe next year. But would love to hear from anyone who has flown. I remember Cathy who posts on this site, saying she had flown 3 times whilst suffering with labs, but don't know if that was at the beginning or at the end of her 'time'. Keeping the faith (although so difficult at times - like now - when my patience seems to have run out). Love, Gloria xx |
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Hi everyone Not posted for a few days as been very stressed at work. We seem to be getting busier and the workload is growing and of course people dont seem to take any account of the fact I am not 100%. I think a lot of people probably think I am skiving because I finish early each day but dont realise how hard it is to keep working through this illness every day. I do feel the dizziness has improved a bit and the swirly head feeling has times when it is improved but of course times like today when it is worse again. I have a really stiff neck despite the osteo treatment which I am certain is part of the compensation process. I am still tired a lot and have had a bad headache these last few days - but that may be due to stress at work. Gloria - so glad you coped with the funeral ok. Getting through events like that are hard at the best of times but with this it's so much harder to be social. I start VRT on the NHS at my local hospital on 16th March. Can you believe that many of the doctors and ENTs did not even know if their own hospital offered VRT and actually told me I would have to travel 15 miles to Manchester for it. I then received a letter from the Neuro Physio Dept at my local hospital saying they do offer VRT. How crap are these ENTS!!! Melissa I have heard many people say they coped fine with flying and labs although I think there are a few exceptions (see Emma's Story on the labs website). You sounds really good at the moment though and as Gloria says I am sure you are almost at total recovery so just go for it and have a great holiday! Glad you had a good birthday Jessica - My birthday was in October and it was a bad day. I know what you mean when you said you do not ever think you will be spending such a large part of time and even important occasions with this condition which most of us had never even heard of until it happened to us! I am not planning to go abroad this year Gloria but I think you mentioned renting a cottage in England sometime and that is a really good idea and something I would like to do. It would be nice just to have some quiet walks and a change of scenery but without the hassle or airports and the worry of flying and being stuck abroad if your symptoms get worse. I wonder if you have to declare with your travel insurer that you have this condition - probably the premium would shoot up if so - any excuse to rip us off!! Anyway I will get back to work now. Still praying to get to full recovery one day! Wondered how some previous posters are - Susanne, Amanda, Niki, Gary, Shirley? Jemma x |
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Hmmm, well my husband is Irish and we're going to visit his family in Ireland at the end of this month or start of April. I'm not worried about it. I can do everything else while dizzy, so I may as well have a dizzy holiday too, if the worst should happen, LOL. I think that the unless you have that mal de debarquement syndrome you should be fine flying. I intend to take a valium before I board the plane! :) Melissa, I totally know what you're saying about not wanting to write it down incase you jinx it. I have had the best three days in a row now. I would say 99% myself. Previously I've only been about 95% on good days, so I am keeping my fingers crossed. For you too! For everyone here! |
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Jemma - great to hear from you. I was wondering if you are ok. I still don't know how you cope with working - amazing, but you just know there are things you just have to get on with if there is no alternative. I know if I was younger then I would be in the same boat as you and would have had to work. Do try and get a short break in the country sorted - as you say a change of scenery can be very refreshing. Well today I went to see my VRT therapist. Because I now get so much head and neck stiffness which has really messed up my muscles, she says its back to the old neck thing causing problems. She did quite a bit of work on my neck and shoulders and has suggested I now go back to my doctor for a referral (again) to see the orthopaedic consultant and get a pectoralis minor syndrome and thoracic outlet syndrome test done??!!!!!!!!!!! WHAT!!!!!!!! She is saying that I have residual dizziness from labs but the neck shoulder thing is now the more predominant problem. Whilst she would love to help, it is now more general physio I need. So what to do!! I still told her that my head doesn't feel right and I know it is balanced related. Afterall, I never felt like this before labs. Aren't you at the mercy of so many people just because we do not understand and like to think that they do - but clearly I don't think they do. As you say Jemma - you would think that they should know who and who doesn't have VRT facilities! Interesting that you still have the stiff neck thing. You see, I am sure it is related to having labs. Afterall, if you have been dizzy for so long of course muscles are going to get exhausted, but I wish there was someone who would say that and tell you what to do! AAAAARRRGH!!!! So here I am not knowing what is what except I don't feel normal and am so so fed up with the lot of it. Anyway, glad you have finally got a date for your VRT - do let us know what exercises you have to do. It will be interesting to compare notes. Jessica - glad you are feeling a lot better and continue that way like Melissa. You must be excited about your holiday to Ireland - it is beautiful and you should arrive just in time for some better weather. Have you still got snow in the US? Echo Jemma's remark about previous folks - how are you all doing. Some total recoveries perhaps? Hugs Gloria xx |
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Gloria, yes we still have snow here and it is very dirty now! LOL Meaghan's communion is May 2nd. We have her dress, shoes and the invitations all mailed out! Gloria, I had the same problem with my neck. The muscles are tight and then they spasm and push on the greater occiputal nerve and other nerves that control your balance. What really helped me was to strengthen my neck and shoulder muscles. I was given a theraband (red, flat, stretchy) and I had to and still do, 30 reps hold band in your two hands with your arms straight out in front of you. Pull the band open and closed 30 times. Remember to not bend your arms. Then do 30 reps with your arms at an angle. Like a cheerleader. Hard to explain. Also, I had to roll a piece of foam like a pool noodle up and down the wall 30 times. Each time I went up, I had to extend my right then left arm backwards. I had a million of these exercises. Now I just take yoga and pilates and do very light weights. Then my physio would do a deep tissue massage. I will miss that the most!! Jessica, I'm not concerned about being dizzy from flying. More afraid that it will hurt my ears or throw me off again. It is so nice to actually feel like myself again! My husband is Irish too. Both sets of his grandparents came here from Ireland. County Roscommon. Where is your husband's family from? Keep the faith!! :) Melissa |
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Thanks Melissa for that. I do have a red thera band - can't remember what for now - think it was years ago and therabands were all the rage for strengthening exercises. Since then it has been collecting dust!! I spoke to my physio this morning and she understands the problem - this is a secondary condition from labs. So I need to see my GP to get a referral otherwise I have to pay yet more money. I have been given some stretches to do, but will definately try yours too. I am so pleased you feel normal Melissa - you give people like me encouragement that normality is there! Hopefully by May your weather should also be much improved. Like us in the UK you have had a bad stretch of weather. I bet Meaghan will look absolutely fabulous. I remember mine only too well. I think I was about 9 years old and wouldn't take my dress off even to go to bed! Anyway, will start therabanding and of course keeping the faith! Love & hugs, Gloria xx |
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Hi Gloria - I think you are hitting the old problem of one expert cant really do much more so they try and fob you off to another one. Whatever they say I am sure your symptoms all stem from the balance problems because so many of us on here have stiff necks etc it cant be coincidence! Melissa - those massages are great aren't they. I have stopped my osteopathy now due to money shortages and I will miss that part a lot. I have been so busy at work it really is sending my head into a spin. It is so hard trying to keep up with everything whilst feeling woozy and off balance. I just collapse as soon as I get home. My ear has been so clicky these last few days. I wonder if that is the muscles inside the ear or fluid building up again. How are your ears Gloria? I really wish I had more time to do exercises and sort this out but with work I am just too tired to do anything when I get home. Take care all xxx |
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Hi Melissa. Have you been over to Ireland? I lived there for years. My husband is from County Kerry. His entire immediate family live there. They've not seen our son since he was a newborn and he's about to turn 2 next month! We're very excited to visit them. I especially need a vacation after all the stress I've been under. VRT went amazingly well yesterday. My physio was having a tough time finding any exercise to make me dizzy. But the thing is, I've been here before. Feeling amazing only to slide back again. I hope she doesn't get the wrong impression and think I don't need the VRT. It's a horrible way to live, always worrying when the other shoe is going to drop. Cautiously optimistic is the key! |
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Hello all, it's been a while since I posted but have been keeping track of what's been going on, and glad to hear some of ye are feeling better. Thanks Jemma and Gloria for asking about us. Gloria, first of all, I'm glad you managed to get through the funeral ok, it's always a rough time, only recently I was at the funeral of a 30 year old, a friend of one of my best friends, he had a heart attack. It really makes you think when you hear news like that, we were only out with him the weekend before he died. You asked me a couple of things before that I never replied to. I'm 35, and I'm no longer taking the SERC, waste of time tbh, might as well have been eating smarties, at least they taste better :) Full of Irish and those of Irish descent on here isn't it, maybe we should change it to the Sharp Blue Paddy Crew, only messing ;) As for myself, this last week to 10 days has been rotten, a total throwback to this time last year. I've had another chest infection that took ages to go away, had 3 courses of anti-biotics and a course of steroids, and now have a constant dull ache in my left lung and it's tender to touch that area of my back where the lung is. Had a chest x-ray last Tuesday week, and am still waiting on the results of that. The dizziness has flared right back up as a result. Part of it is probably self inflicted though, I managed to get to 4 aikido classes before I had to stop due to my chest. Aikido is brilliant folks, it really puts you through your paces, lots of rolling and falling, better than any VRT I've done before, DC was right, and I'd recommend it to anyone. That or Tai Chi. You get that buzz like when you finish a workout in the gym, and I can't wait to go back. Hopefully the chest thing turns out to be nothing major. Interesting to read what your VRT therapist said Gloria, I went for physio before Christmas, and didn't go back due to the bad weather but had problems with the 4th and 5th vertebrae in my neck, it was quite sore when she pressed down on it, maybe that's not helping. Posture is a major thing when it comes to the neck and upper back, and mine is terrible apparently :) Or so she said. Jessica, it's a shame you're not in Ireland today, it's really nice atm, it feels like Spring, the sun is shining and it's not too cold, hopefully you'll get the same when you come over. Kerry is a beautiful part of the country, will be heading that direction (well almost, Cork) for a wedding in May. Melissa, Sandie, how are things? Take care all, Gary. |
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Gary - hi! how great to hear from you - have been wondering about you. Sorry to hear you have been so poorly. Chest infections are not the greatest and do take ages to shift - although are you sure you haven't had a touch of pneumonia? Sounds a little like it with a tender back area. Anyway, wish you well and a very speedy, total recovery - at 35 you are just a wee nipper (!) you'll be bounding along soon! Good for you that you got into doing the Aikido - has to be the best VRT. I am sick and tired of doing VRT, exercising and the like. My head and neck is a total mess at the moment. I cannot get anyone to say why I have this vice-like band around my head all the time. When my VRT physio felt my neck and shoulders, gasped, and took off her jacket as if to say - this is going to be a tough challenge - I didn't hold out too much hope! My posture isn't what it should be either, but whose is? So, tomorrow back to the doctors to request a vestibular and muscular-skeletal physio. Apparently, if you have other physical issues as well as vestibular, they are the people you need to see. Fortunately, my neighbour next door works in the physio department of a hospital a few miles away and has told me to be referred to her. So here we go again. Will this thing ever end. Expect you are asking the same Gary? Thanks for your concern about my uncle and I'm so sorry to hear of your friend's death - so so young. You do have to put life into perspective when you hear of shocking things like that for sure. You mention the Irish contingency on here, well I also had the Irish contingency from Castlebar at the funeral. They certainly made my uncle's wake more cheerful!!! Gary have your dizzy spells been better before you got your chest infection or has it been a constant up and down? Anyway, lovely to hear from you - wish you well. Do keep in touch. Jemma - you seem a bit stressed again. Any improvement at all? My ear has subsided again compared to what it was a few weeks ago, but still feels a bit 'full'. Onwards & upwards I suppose - what else to do eh? So love and hugs to the Sharp Blue PADDY Crew!!!! Gloria xx |
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First I want to say hi to Gary who I've never spoken with before. I've seen your posts but figured you lived in Glasgow with your Hoops strip on! Hope you feel better soon. Do you live in Dublin? I just came across something I wanted to share with some of the ladies on here complaining of neck pain and ear fullness, etc. Are you familiar with TMJD? This is something I've had for a few years. I caused it by clenching my jaw at night when I sleep due to stress. I have a mouth guard I'm supposed to wear, but I always forget to. In the past few days I have been having pain in jaw and a clicking sound in my ear after I talk. I also have this feeling of fullness in my ears that I assumed was leftover labs symptoms. Then I remembered my TMJD and started googling symptoms. I never knew that it's predominantly a women's disease affecting women 30-50 years-of-age. That the symptoms generally include, headaches, ear pains and fullness, tinnitus, clicking in ears, *dizziness*, neck pain and back pain, etc. This is because the TMJ muscles put pressure on the inner ear and cause all sort of trouble. Look at this: "Another muscle adjacent to the inner ear is the sternocleidomastoid muscle which attaches just below the ear. This neck muscle is almost always involve in patients with TMJ disorder. The sternocleidomastoid can refer pain into the ear and also can cause significant dizziness since this large muscle helps the head balance and orient itself." I'm just putting it out there as something to consider, especially with the stress we've all been under. You might be causing yourself TMJD. I'm sure that's why mine's flared up, and who knows, maybe it's a contributing factor to my dizziness too. |
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Can I post a link here? This link explains a bit about unresolved ear problems/symptoms and TMJ: http://www.migrainedentistry.com/symptoms/earsymptoms.html |
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Hi all, Jessica, i too did look at TMJ but never mentioned it to dr as took labs as my diagnosis.I too hace a mouth guard which i have never worn as i always clench my teeth when stressed.My jaw cracks just below my ear and sounds really loud to me!!! Gloria.glad you got through the funeral ok. I "touch wood" havent been so bad the past week, i have had afew odd moments but not as bad as i have been, and i find now i have no blocked nose and ears seem ok....i know now when the dodgy feeling comes of blocked nose and ears i on the road to another bout. Gary. sorry you are not feeling to good, and sorry to hear about your friens friend, so young too. Shirley, i hope you are feeling ok. Jessica..Happy belated birthday, did you do anything special? Love to all Penny x |
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Gary, Good to hear from you again. I have been 100% fine now for over a month. Every once in a while my head is a slightly bit swirly. Usually only when I am tired or hungry. Hopefully this is it, but as Jessica said you never know when the other shoe is going to drop. This weekend will be a true test of my wits. I am going to Cornerstone at my church. Basically I have to be there for 24 hours! Sleep there too! I have to go. Talk to you later. Melissa |
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Well, cannot believe I have relapsed so bad. Awful today - so dizzy, that lovely nausea back, shivery and shaky, upset stomach plus the on edge anxiety feeling. The whole works! I suppose this is the result of quite a hectic last few weeks. Before all this, I would have coped with that and more. Jessica - did see my dentist about TMJ and even though he gave me a mouth guard (anything for a sale!!) he said I didn't have TMJ. I have worn the guard a few times - didn't notice much difference and as you say, keep forgetting to put it in! Anyway, back under the duvet time for me and pray so much for this to go. Have good week-ends everyone. Hugs, Gloria xx |
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Hi everyone Gary glad to hear from you and sorry about your friend. I hope you get rid of the chest thing. I had a flu a few weeks ago which really made me feel bad and for several weeks after I was coughing and my chest was really tight. I was so short of breath I started to think i was getting asthma. This seemed to then set off the anxiety again and Gloria like you I had a relapse of the anxiety symptoms, racing heart, shaking, a panic attack in the night, horrible. It has improved this last week but you just never know what is coming!! I never had much nausea at the beginning of this but I do find that sometimes i feel nauseous now but it isnt so bad i lose my appetite. It seems to tie in with the woozy head feeling. I managed to see Alice in Wonderland at the cinema today and felt ok. My eyes felt strange when i came out and i had the usual odd feeling in my head but overall i seem to be coping better. Stress of work does not help and of course new symptoms can appear at any time. Hope you feel better tomorrow Gloria and Melissa good luck the the sleep over thing, that will be a real test. Take care all Jemma xx |
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Gloria, Hope you start feeling better soon, I had another flu 2 weeks ago when I finally got my holidays, it really got me depressed but I have pretty much overcome it and my balance is good only slightly out, this is a rollercoaster ride but we will get to where we once were... DC |
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Hi all, Well I made it with NO symptoms at all!!!!!! I have a cold and I have my monthlies. Just love how you call it that. I have had no problems. I am very tired and had a wonderful experience at Cornerstone this weekend. Without sounding like a holy roller, it was very cathartic. Especially after all that I went through this year. I am going to pray for all you. I am not in any way a "Holy Roller" nor am I that religious. I just think we could all use a little extra help with this crap. Gloria, I am so sorry you are feeling ill. Could you have eaten something or caught a bug of some sort that has made you feel sick? Jemma, Sandie, DC, Jessica, Gary, Penny and anyone I forgot...How are you? Keep the Faith! Melissa |
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Hi All, Just a quick update: I am finally over my cold although I still feel a bit sniffy (if that's the word)that's 2 colds now in the 4 months I've had this thing and before this it was about 3 years. I guess I am just more susceptible to getting them now. I have seen the phsysiotherapist for my VRT. I've been doing them now for about 4 days. They are quite easy ones so I guess she will give me harder ones as time goes on. I need to see her again in 2 weeks where she will assess me. It has been so nice to talk to someone who understands this problem. She gave me tests to do and said that I had come on well considering how bad I was at the beginning. She has given me hope that one day this will go. I asked her what the percentage was for this to return and she said around 10 to 20 per cent so the odds are in my favour. She tested my balance and I was ok with eyes open but once closed no good. She is also going to try and help me lie flat when sleeping. I used to prop myself up with 5 pillows but now 4 and later on in the week I will try 3. I think its more anxiety than anything else that makes me think I cant lie flat .. just don't want that spinning feeling to return on waking I guess. I think a lot of mine is anxiety related. She said she will try to work with me on this. It's a lovely day and my car needs a clean. There is a hand wash just down the road and I am sure I can drive that far but the axiety asks me "what will you do if you get dizzy whilst out" it does it to me all the time and I am beginning to become a prisoner in my own home. If someone is with me I can cope, but on my own not so good. Mellissa: fingers crossed this is it with you. It does make me feel there is hope when I read stories like yours. Penny: Hope your ok Gloria: Sorry to hear your cold has pulled your down again, hopefully will pass soon and you will be back to how you were or better. Jemma: Was Alice in Wonderland good: If I can get over this anxiety I would love to go and see it. Jessica: Another story that brings me hope. Keep the faith. Take care Shirley |
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Hi all. Gloria, sorry you've relapsed. This thing is the absolute pits isn't it? You think you have a handle on it and then it kicks back in. My dizzy spells have been a constant up and down - good as in almost symptom free for weeks then bad for weeks, this last one was a particularly bad one with the infection, but I'm expecting to go back to how it was before getting ill. A good guide for me is the tinnitus in the left ear - the louder it is when I wake in the morning, the worse the day will be. It's probably a permanent thing now, but it's not normally too bad. You mentioned pneumonia - I had it as a kid - but my doctor didn't seem to think it was that, will hopefully get the chest x-ray results tomorrow, but it's not as bad as it was. Am hoping even to be able to go back to aikido on Tuesday night. Hope you feel better soon. Jessica, I'm from Monaghan, on the border with Northern Ireland originally, spend half my time up there and the other half in Maynooth in Kildare. Hoping to go back to college in Maynooth in September, great little town. Penny and Jemma, thanks for the concern, hope things are well with you. Melissa, fingers crossed for you from me too, it's always good to hear recovery stories, gives the rest of us a lift so with a bit of luck you're there :) DC - was it jiu-jitsu you said you were doing? You still at that? There's a class doing BJJ who train alongside us on a Tuesday night, it looks brilliant and I'd love to give it a go sometime. It seems all martial arts around where I live happen on at the same time every Tuesday and Thursday night which is unfortunate, but I'm just happy enough to be able to go to one of them - 6 months ago there wouldn't have been a chance. So that's improvement in itself. Anyway, that's my lot for now, Good luck all, Gary. |
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Gary, Yeah I was doing BJJ, its and awesome style all based on the ground grappling, I only go casually at the moment but I am looking to get back into regular training in the near future. Just trying to get through this fatigue I have been battling, if its not one thing its another... Daniel (DC) |
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Good morning, everyone. It's just past 9:00 a.m. here in NYC. Everyone watch the Oscars lat night? Was probably on too late for UK and Ireland, so I won't spoil anything for you by talking about it now :) I have been doing really well lately. Hovering between 95% and 100% for the past week. I feel 100% in familiar settings like my home and office, but new places can throw me a bit. Went to get my hair cut on Saturday and the salon was making me feel a bit unfocused. Went to Home Depot too (big DIY shop) and the aisles were getting to me. Still, I must say that even my bad moments are nothing compared to where I was just 8 weeks ago. The only thing really bugging me is I have this fullness in my ears, occasional ear pains, and the clicking sounds after I talk. This is all new (about a week ago it started), that is why I am thinking TMJ rather than labs. I see my new otologist today, so I am going to ask him his what he thinks. I am looking forward to a fresh perspective. Have a good day! |
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Hi all, Gary/DC/Shirley/Melissa and Jemma - thank you so much for your words of comfort. Feeling a bit better today than over the week-end, but still worse than I have felt of late. This is the time when you really do need to have max strength, because you think if I have relapsed this further back symptoms-wise, then is it going to take a good while to be as I was a few weeks ago? The nausea for me is part and parcel of my worst symptoms. Haven't had that for about 4 months or so. Am seeing my neurologist on Thursday - I can't wait to see what he has up his sleeve for me this time, especially if his advice last time was we all have our crosses to bear and this is yours I'm afraid!!! So constructive. Tonight, I am going to make myself go the the local aerobics class. It seems I need the more vigorous exercise now to compensate my brain. Gary/DC would you both agree that being alot more physical in your activities has helped? I don't feel like going but I can't stand feeling like this - so whatever it takes! Shirley - glad you are ok with your VRT. Like you I am OK with eyes open, but closed am everywhere. Keep doing them - it does take a while and as you can see, will have to up them eventually to doing stuff which is a lot more active. For me this is hard. I am not and have never been someone who relishes going to the gym loads or running round the streets. But as exercise is good for you, maybe this is the kick up the proverbial I need to get a bit more in shape!!! Gary - hope your x-ray results are fine - you sound as if your chest is better & get back tomorrow to all that throwing around! I'm sorry, but am a bit naive about martial arts and the difference between each one. DC - sorry to hear your 2 week break was not a brilliant one. Hope your fatigue is improving. When you feel so exhausted it is difficult to get motivated. Don't know where you are situated, but for us in this part of the hemisphere, can't wait for warmer, brighter days. Our winter has been so long. I, also think I suffer from a bit of what they call SAD - a deficit of bright daylight and sunshine! Take care all, Hugs, Gloria xx |
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I haven't followed in a couple years. Just wanted to say I'm doing fine although I still don't feel normal. I got VN in June of 2006. I had it in both ears with the left being the worst. I had terrifying symptoms like many of you all. One thing I do know is that the only way VN can go from one vestibular nerve to the other is through the brainstem. And even if one ear is involved, the brainstem on the affected side can be damaged from the infection or whatever. That will NOT show up on an MRI or CT scan. The brainstem is responsible for all the things we don't have to think about like heart rate, breathing, balance, anti-gravity postures, etc. Thus during the initial illness I had abnormal heart rhythms and difficulty breathing plus so many odd symptoms that the dumb doctors couldn't figure out. If you think about it, it makes sense. Anyway, I have learned to live with the damage and I am so much better than I was almost 4 years ago. I have compensated and still am. I started back to yoga recently. I was terrified to go back as I knew I would feel bad in all these weird positions. Well I was right. I felt horrible after yoga and for a day or 2 afterward but now I can do some of the positions without getting dizzy. I am posting this now because I am finally not scared anymore. I know I won't die. I remember the horrible anxiety and hated lying down. Anyway, keep hanging in there all of you. The brain is amazing that to some extent it can heal because of neuroplasticity. Hope I didn't sound like a smartass. Just trying to give comfort. Megan |
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Gloria, Exercise has helped me compensate. I run usually 4-5 days a week and I do yoga and pilates. It has helped with my balance too. Good luck tonight. I have a bad cold, but no symptoms other than normal cold symptoms. I pray that this is it! Jessica, a lot of us on here with labs had crackling, clicking noises and ear pain/fullness too. I have had tinnitus and ear pain. Megan, glad to hear that you are doing well. The anxiety is much more manageable because we know what to expect from the symptoms. Keep the faith! Melissa |
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Gloria, I can't really say it's helped yet, as I got ill again after taking up aikido and havent' been back since, but it definitely tests you. I felt great after each session bar the 2nd one, but that's because there was no ventilation in the gym, the heat was on and there was no water to drink and I felt rotten with a headache after that. Am still brainfogged up at the minute, it's been 2 weeks now, but nothing out of the ordinary and I'll go back tomorrow night even if I still feel like this tomorrow. The fitness side of it is great. Just made sure to keep hydrated if you go the aerobics, and if you feel too dizzy, explain to your instructor beforehand about labs, and they will understand if you need to stop. My aikido instructor I was shocked to find out has had a vestibular disorder for years, and she's in her 50's, but is a 3rd dan black belt (very good) so there's hope for us all :) Good luck with it anyway, and let us know how you get on. |
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Thanks Gary/Melissa for your replies. I am really pleased I went last night. I explained to the instructor of my condition, ( she hadn't heard of it but like you say Gary, did say to stop if I needed to) but I was amazed I got through the session. Having done aerobics in the past I was fairly familiar with the moves and it was constant. Mid-way I did feel a bit woozy and thought I would have to stop, but just slowed the pace and drank my water. Anyway, this morning my head does feel loads better than it has of late. Still have the tightness and feel as if my muscles are trying to keep everything stable, but feel inspired that maybe this is what I need to do. Maybe like you Gary it feels good after each exercise session, but time will tell if I go backwards a little after a couple of days. Melissa - so really glad you are better - I'm sure you are out of this now. I do think the amount of physical exercise you do has obviously helped enormously. However, I don't think I am in your fitness league LOL!!! Whilst I will increase my number of sessions - (instructor said try to do 2 classes next week) in the interim I am going to do very brisk walks some little trots ( I can't run for any length to save my life!!). Hope your cold gives over soon. You must be looking forward to your holiday in April?! Good to hear from you too Megan - thanks for your encouragement. After last nights exercise session, I can see how you need to quite vigorously challenge the brain the further on in this illness that you are. I have stopped doing the other VRT exercises - except balance ones as I am sure they aren't doing my neck any good and they aren't challenging me anymore anyway. Well I hope this sounds like a more positive post than of recent days. My body will probably be a quivering wreck tomorrow as a backlash from exercise of which it hasn't known the like lately LOL!!!! So I may not feel so positive then. Anyway - thank you all - as usual - for your tremendous help and support by caring. It really does mean loads to me. Love & hugs, Gloria xx |
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Hi all I am pleased you coped with your aerobics Gloria -doesn't it make you feel so much more positive when you achieve something you couldn't do before. It really is such a comfort thinking you may be on the road to recovery. I have been quite good since Sunday. The dizziness has improved and whilst I am still a bit tired and daze-like at times I do feel I am coping quite well. You never know when things will go worse again, I dont think I'm out of the woods yet but for the first time I am starting to have hope that a full recovery may be possible. Ear (left) is still annoyingly clicky though! Gary and DC and Melissa - gosh well done with all the exercise. Now that the weather is improving I really want to do some more walks. Like you Gloria I dont have the stamina to run anywhere. That would kill me even when I was well! I just dont seem to have much time or energy after work to do much exercise which is annoying. Shirley - Alice in Wonderland is worth seeing for the impressive sets and costumes etc but it does not really follow the book and some of the characters are missing so in that respect a bit disappointing. Anyway as Gloria says, onwards and upwards (I hope!) Jemma xx |
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Hey Sharp Blue its me again i wish i had more positive news , but yesterday was the 4month mark and my swaying/ movement 24/7 is as violent as it was the first day of Suffering November 17th , my ear in general feels better with the feeling of fullness gone but my worst symptom persists :( i can can take comfort that my balance is slowly improving however and my light sensitivity is easing. Gloria- perhaps Exercise can help relieve our symptoms at least temporarily it seems to help me at times not with the swaying but definitely relieves me of the stress and worry associated with this condition :) |
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S, I found that exercising everyday has helped me tremendously. Try to do something everyday. Walking, yoga, pilates. I am very slightly swirly headed today. I am just getting over a cold and didn't want to take anymore cold medicine. I guess that I have some fluid in my ears. Not sure, when I bent over before my right ear (the one that was affected) hurt. I am going to take antivert tonight before bed. That usually works to clear up my ears. All in all I really feel 100% better. Considering I have a cold, I thought I would be way worse! Melissa |
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Hi all, Went to the neurologist yesterday. Instead of my usual 'putting- on -a-happy-face' - I was very tearful and told him that this was all getting too much. I have found the tight, painful muscle thing worse, can you believe, than the swirly head. So in his usual matter of fact way said we can try other medication, I can do physiotherapy (been doing that for the last zillion months) or a good old fashioned holiday somewhere hot! Would he be paying for me to go then??!!! Anyway, he told me that because of the imbalance of messages from muscles to brain with labs - my muscles are now in a non-stop spin so to speak and I need something to stop that cycle. So here I am now on an anti-epileptic drug also used for neuropathic pain. Apparently, among the side-effects are in the very common category - viral infection (?!!), drowsiness, DIZZINESS (oh joy!) and anger towards others - have warned my hubby!!!!!!!!!! He has told me that this isn't a life sentence and I will be better but admitted it could be between months or a couple of years. Maybe the vodka bottle will be a more pleasant answer (Joking)! However, I am going to continue with my exercise (if I don't drop off to sleep in the middle of it). Good to hear from you all - S - you are doing OK. Although maybe slow, but improvement is there. Do exercise as much as you can - I only wish I had started earlier in all this. Melissa - you are still doing great albeit with a little blip. Your cold I'm sure to blame. Jemma - I am so thrilled for you that you seem to be coming out of what I call a stagnant phase when you are just caught in a whirlpool of symptoms. I feel like that just now. Great you managed the cinema. Keep going girl - upwards and onwards!! Friday again and nearly the end of what has not been a good week for me - but hopefull next will be better. Two weeks away from our break down to Cornwall - can't wait. It might not be the holiday abroad the neuro talked of - clearly for him money is no object. For me it is a huge object. That said, I am going to invest in a bicycle this week-end as that is also good for balance. My last bike was stolen (and my hubby's) from our garden shed a year back. I will be intrigued to see if I can get on a bike again and cycle without falling off! Anyway, have good times this week-end. Hugs, Gloria xx |
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Hi everyone, I've been lurking here for a few weeks now, but have finally decided to say hi after seeing S's latest post - I'm in almost exactly the same boat as him, having been struck down with a dizzy spell out of the blue in early November, and now four months later I'm still having a lot of feelings of swaying and swirling in my head, and my vision is also still really messed up when I'm reading or using computers (which is basically all the time, as those two things are both my job and my hobby!). During Christmas and over much of January I suffered big-time from anxiety, but although I'm still worrying all the time about how I feel and what's wrong with me thankfully almost all of that anxiety has subsided now. I do feel better than I did during the first 6-8 weeks of all this (when I couldn't even look at a TV screen for more than a couple of minutes!), but this last week in particular has been really bad and I'm feeling very down that four months later I still feel so rough. I'm still working full-time, but it doesn't seem to be getting easier (I always feel at my worst at work), and the only time I seem to feel more like myself is when I'm out walking (which I try to do for 45 minutes or so every day). My doctor has told me that my problem certainly sounds like an inner ear issue, and after a hearing test which showed a bit of hearing loss on one side (where I also have tinnitus and an occasional feeling of slight fullness) I've been referred to the ENT department, so I'm currently waiting for an appointment. In the meantime though, every day seems to be more difficult, and aside from maybe one or two days where I've felt close to normal over recent weeks I can't even see much light at the end of the tunnel. |
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Hi Andy, Welcome - so glad you felt able to post your situation and how you are currently feeling. This site, as all of us have said has been our saviour. We can all vent how we feel and how it affects our lives because we all totally understand. Certainly you seem to have an inner ear disorder. Labs can come on just like that. Although for me and some others it followed a very nasty viral infection, in my case a chest infection. Did you have anything like that before the symptoms came on? However, that said a lot of us, me included, had a hugely stressful period in our lives that could have been the reason why our immune systems were so low. You WILL get better - it just takes time. Longer for some than others. Already you are saying you notice a difference in how you feel compared to the beginning. The fact that recovery, unlike other illnesses, isn't linear. This peaks and troughs all the way through until it finally leaves you. For me I am at nine months. Have had some good periods, then have felt a bit rough again. This you have to accept. Key things - try to be positive. Keep active every day. Brisk walking, exercising, whatever you like to do. Ask your GP about VRT vestibular rehabilitation therapy. These are a series of daily exercises to help retrain your brain to re compensate. All of what you describe I have had as have the others here, but now I can watch telly, and am doing everything normally. I still know my head isn't right and doesn't feel normal, but you get used to it. It is slowly getting better. As you may have read, my neurologist has said this isn't a life sentence. It will get better. For me at present the way my imbalance has made all my head and neck muscles stiffen has been horrible, but I try to keep positive and active. My only annoyance is I still can't tolerate an odd glass of wine. Am loving red grape juice though LOL!!!!! Andy - we know just how you are feeling. If you feel it helps then keep posting your thoughts and feelings. If you have odd symptoms tell us because this thing gives so many odd feelings and symptoms that you think they cannot be possibly related. They all are and one of us will have had them I'm sure!! Good to hear from you. Take care and hope your week-end is better than last. Our mantras - keep the faith and onwards and upwards! Hope everyone else is fairing OK. My new drugs are OK at the moment and seem to be helping - early days though!! Love & hugs, Gloria xx |
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Hi everyone Andy sorry to hear you are feeling low, this thing really is horrible and at times makes you feel like life is not worth living. As Gloria says though, despite the downs there are some ups and it slowly improves albeit with some very odd symptoms along the way. I am still feeling ok dizzy wise. I have got a tight chest again though, feels like asthma sometimes although i never had this before. I also feel my throat is tight and i keep swallowing. Really weird. I dont know if that has anything to do with my clicky ear. gloria - you really do have to show these doctors your bad side to get anywhere dont you. My natural response is to try and be positive to other people but if you do that the doctors dont take you seriously and send you away. good luck with the new medication, it sounds a bit scary but hopefully you will see some good improvements in your symptoms. How is everyone else? xx |
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Hi all, Damn Labs!!!! Just when I was in the clear for almost two whole months, BAM!!! It rears it's ugly head again! I had a cold this week and apart from feeling tired and rundown from the cold, I felt fine. No dizziness or swirly head. Wouldn't you know it, yesterday I started to feel that funhouse floor feeling again. You all know the feeling I am talking about. My head feels tight and swirly and when I walk it feels like the floor is moving under me. I HATE that feeling the most. I think it is because of the cold I had and it is raining so hard here for the past two days and it is not going to let up for another two days. Maybe being stuffed up and the barometric pressure change is affecting me? Anyone thinks so? I am not anxious about it, just mad! When will this go away for good? When can I trust feeling better means I will stay better. Gloria, you said it, this is not linear! Andy, welcome. You have found a wonderful place to seek advice and vent all your feelings. We all feel and felt exactly how you feel and felt! LOL You will get better. You WILL have days where you feel nothing. Again, this is not linear. You will have ups and downs. Just ride them out and have faith. Stop looking at the time frame of how long you have had this. For me it's 10 months! I have been fine the past two months. Just have faith and look at how far you have come. Gloria, good luck with the new medication. Do they want you to stop the other medication or take it together? Is that medicine really going to help or do you need more physio? I hate these doctors and their presciption pads. PUT DOWN the pads doctors. Just put down the blue pads.... Keep the faith! Melissa |
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Welcome Andy.... Melissa poor you, and you were doing so well. I have been ok for 3 weeks now!!! I havent had a glass of wine since i had that very bad experience with 1 glas 3 weeks ago on an empty stomach.I wonder if that has anything to do with it.My nose isnt as bunged or my ears.My head still slightly muzzy but not half as much. I am awaiting its return!!!! this is too good to be true....but you never know. Gloria...Hope you are back on the raod to recovery and that the tablets work for you.. Does anyone have a problem with heat with labs..I find my hand are freezing cold but the rest of me warm, then my hands are warm, its very odd. Jemma, Shirley, Gary and the rest of you hope you are all coping ok. I havent seen alice in wonderland yet, the kids (and me!!) are waiting for the 26th for nanny mcphee the new one.I loved the first one. Going to the races next week my friends are treating me for my 40th so i am focusing on that this week, i find if u try not to be anxious and stressed which i am trying not to be and look forward to something it helps take your mind of labs. But it is always there and i am thinking when will it return...i really hope it dosent...as 3 weeks sympton free is so lovely!! Love Penny xx |
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Hi Everyone, I'm so glad that I found this website! It has been the best thing to happen to me since I started feeling strange (for lack of a better word). I have had a rough time the last couple weeks and its nice to know I'm not alone. My ordeal started at the beginning of February when I had the flu to end all flus. I was sicker than I had been in a very long time and was so relieved that I felt better in time to go to Jamaica. However, when I was in Jamaica, I noticed that my vision was impaired and that I felt dizzy all the time. Not too dizzy but enough that I felt slightly nauseated all the time. My vision continued to deteriorate and I was experiencing pain in my face, mostly in my sinuses. I was also feeling anxious (but this could have been because I thought I was going blind). When I got home, I immediately made an appointment with my optometrist who sent me immediately to an emergency appointment with a eye specialist who diagnosed me with uveitis, inflammation of the eye's vitrious (eye jelly). I mentioned that I was experiencing sinus pain but was assured that it wasn't related. I was put on a very aggressive course of steroid and anti-inflammatory drops. Because this condition is very rare in people without auto-immune disease, I was sent for a battery of tests (blood and xray) to see if I was arthritis, IBD, or MS. This obviously scared me quite a bit. For a few days, my eyes seemed to be improving. My vision improved and the light sensitivity I was experiencing also diminished. My anxiety levels were still pretty high but they were manageable, especially after my tests came back normal. I thought I was on the mend... Then, about a week ago, I was in the car talking with my boyfriend when out of nowhere I had this strange feeling that started in my head around my ears and radiated down my body. I felt lightheaded like I was going to pass out and the world looked totally surreal. My heart rate shot up and I was feeling very anxious. When I got out of the car, I felt like the earth was moving under my feet and I had a hard time getting into the house. My boyfriend's father is a doctor so I told him how I was feeling an he took my pulse and blood pressure (which were both high). He got me to lay down to see if it would help but I kept panicking (thinking that it was MS or something). I jkept feeling the jolts down my spine and the feeling that I was being pulled backwards. My head also felt heavy. I managed to sleep that night but not very well. The next day the spinning got worse and I vomited. My anxiety was so bad that I got my mom to take me to the emergency room. I got in right away because my blood pressure was 156/103. Since I'm only 24 they were concerned and tested my heart (which is fine). The ER doc was great and diagnosed me with VL pretty quickly. I'm on Serc for the dizziness and have taken ativan when my anxiety levels have been particularly high. Since then, I've had weakness in my right arm as well as tingling and numbness in the right side of my face. Although I do see some improvement, I've found the anxiety and depression the most difficult to handle. I'm unemployed and it a great deal of debt so that stress is adding to the situation. I'm just glad that I've found other people who have experienced my symptoms so I can stop worrying that its something worse. Has anyone here had problems with their eyes (iritis, vitritis, uveitis, etc). Or just eye pain/pressure? I'm trying to figure out what else can get inflamed next so I can be prepared haha. Anyways, I thought I would post my experiences (catharsis) but also because it might help someone else is freaking out like I was. |
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Thanks for the welcome everyone! Finally got my ENT appointment on Friday, but it isn't for another six weeks!! Very depressing knowing I'll have to wait that long to even see someone. Funnily enough, I don't have any problems drinking wine these days - A couple of sips would make me feel drunk back when this first started, but now I can have a couple of glasses and not really feel any different to how I'd tolerate it before this began. I started yesterday feeling really low but cheered up a fair bit after an entire shopping trip without feeling too bad at all, and I actually had a good, relaxing afternoon and evening afterwards. If every day was like that I wouldn't mind so much! The trouble is, it's always going back to work that I dread, as I know that means a day of aching back and neck muscles and feeling way more tired and "spinny" for most of it. I am trying to do some "home-made" VRT a couple of times a day, which I think is maybe helping a little, although I'm not sure whether I'm doing it right or focusing on the right exercises for my problems! |
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Hi all, Welcome Laura when you have never had or even heard of this illness before (like me & most of us) it totally freaks you out. I spent so many days in A & E (UK equivalent of ER) because I thought I was having a stroke or had a brain tumour. My vision was badly affected - I had to change my varifocal glasses to single vision because my brain couldn't cope with the varifocal lenses. Watching TV in the early days was impossible - everything was so bright, loud I couldn't take it. Sickness, tingling and numbness, racing heart, first hot then shivering cold, electric impulses shooting through my head, heavy head feeling and such tightness around my head like someone was blowing a balloon I thought it would burst. Pain behind my eyes - just so many symptoms. Try to keep calm Laura - you probably have read all our posts of late perhaps to get an idea of how we all suffer. You are young and will fight this off quicker I'm sure. It does get better but as you can see from Melissa's post isn't a straight line to recovery. A lot of people do recover by 3-4 months, but others like a few of us it seems to take a little longer. Probably like us all, I am so so impatient - just want it all to end. One thing this does teach you though is how to be strong and oh so patient!!!! After the initial few weeks you do get to a point of where you are coping with day to day stuff albeit feeling a little odd. As I said to Andy who posted a couple of days ago - if it helps to write about how you are feeling - just to vent - we are all here to help. MELISSA - what the heck?!!! You poor thing - it must be the worst to have such a long period of being fine and then back to square 1. What will be interesting is to make a note of when it came back, how long the bad symptoms lasted for and if you got back to feeling fine again as you have been doing, then note how long you have had a good spell. Maybe it will show that your good phases are getting longer and longer and the relapses shorter and shorter. Penny - good to hear from you. Glad you are on the up as they say! Funny, since this I too get freezing cold hands to the point I think my fingers are going to drop off, but the rest of me is OK. Obviously has to do with circulation which also seems to be affected. Let me know what the new Nanny McPhee film is like - I loved the last one. I am just a big kid at heart LOL!! Jemma - good to hear the dizzies are OK - yay! Whilst you appear to be having a tight chest, for me as you've read has or rather still is tight tight head and neck muscles. So maybe again it is a muscle thing but with you it is your chest? What do you think? Andy - hope your week-end has been a little better. Laura/Andy - keep us updated on your progress. Love & Hugs to all, Gloria xx |
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Thanks for the welcome everyone! Finally got my ENT appointment on Friday, but it isn't for another six weeks!! Very depressing knowing I'll have to wait that long to even see someone. Funnily enough, I don't have any problems drinking wine these days - A couple of sips would make me feel drunk back when this first started, but now I can have a couple of glasses and not really feel any different to how I'd tolerate it before this began. I started yesterday feeling really low but cheered up a fair bit after an entire shopping trip without feeling too bad at all, and I actually had a good, relaxing afternoon and evening afterwards. If every day was like that I wouldn't mind so much! The trouble is, it's always going back to work that I dread, as I know that means a day of aching back and neck muscles and feeling way more tired and "spinny" for most of it. I am trying to do some "home-made" VRT a couple of times a day, which I think is maybe helping a little, although I'm not sure whether I'm doing it right or focusing on the right exercises for my problems! |
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Hi everyone Laura i have had some problems with my eye linked to this although nowhere near as serious as yours sound. For me it is an intermittent stiff discomfort in my right eye, very weird. Gloria - i think i now know why i had a tight chest... i have developed a really sore throat today, my mouth and throat are dry and sandpaper sore. I have just got over one flu, i cant belive im getting another so soon ARGHHHHHH!!! my immune system must be dreadful!! Melissa sorry you have had a bit of a relapse, so frustrating. i am hoping this wont make my dizziness worse but this thing never seems to fully leave you does it. I havent drunk a drop of alcohol since getting this and i dont know if i will ever dare again. The thought of giving myself some of the symptoms of labs,ie dizzy, headache etc just fills me with dread. I just want a clear head for the rest of my days!! Happy mothers day for all the mums on here, hope you have a non-dizzy day xxx |
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Andy - glad to hear back from you. Glad that your Saturday ended out better than it started. Most of my days start out this way, but after a deep intake of breath, I have to take the bull by the horns so to speak and try to do the best I can with my day. It is exhausting battling with this, but it will all go and we will all have a lot of catching up with life to do! What are your home-made VRT exercises? Good for you for doing something. You are right though - you need to get a VRT referral when you see your ENT consultant as they will assess you individually and give you exercises appropriate to you. On this site, Page 11 September 23rd last year, a lovely lady on here called Sandie, who has kept us all very buoyant with her pearls of wisdom - listed 2 posts of VRT exercises - maybe helpful. Where are you based Andy? Six weeks for an ENT appointment is good. I had to wait 3 months! I decided the wait was too much and went privately. Don't think I got any better advice or treatment - it was just quicker! Melissa - hope your relapse is subsiding and Jemma - another cold! You need (we all do) what my neuro suggested - a holiday somewhere hot and relaxing! Shall we go and send him the bill LOL!!!! Take care all. Speak soon. Hugs, Gloria xx |
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Gloria - Mainly I'm just doing head movements (up and down and side to side with eyes open and then closed), and then some gaze stabilisation stuff, looking at a letter on a piece of paper while I move my head or the paper. I only spend around 5-10 minutes on them each day, and I have no idea if it's helping, but at least I feel as though I'm doing something. I also walk a couple of kilometres each day, which I find always makes me feel a bit better after some long hours in front of the computer. I'm based in Poole down on the south coast of the UK - I'm trying to look into a private consultation at the moment, but I keep getting passed from department to department with broken promises to phone me back all round! I know it won't give me a miracle cure or anything getting a quicker consultation, but at least some official answers rather than my self-diagnosis might make me feel a little more confident in what's going on. |
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Hi everyone, Melissa, so sorry that you are having a bit of a relapse - this is so normal with inner ear stuff. Hopefully your symptoms will improve for you soon. Gloria - aaah, thanks for calling me a 'lovely lady' - how are you and what are these pills you are taking? I wish I had some pearls of wisdom today but I actually feel quite bad. Over the last couple of weeks my symptoms have got worse and today seem to have peaked. My head is spinning and my balance has gone again. Hence the revisit to this board! This happened last month with my 'monthlies' - I was a couple of weeks late last month (menopausal!!) and this month the same. So I think it's definitely the hormones controlling everything at the moment along with the blocked ears. I know that if I can't blow my nose properly in the morning then I'm in trouble! So, I'm stuck back in the house as I wouldn't dare to go out alone when I feel like this. It's so scary. Sitting on the computer now I keep lurching forwards as the balance thing still affects me even though I am sitting down. It's five years for me this month - should I celebrate - no bloody way!! But, I do know that I'll maybe feel better tomorrow - ups and downs - that's the way it goes. Take care everyone. Sandie xx
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First, just want to say that this comments thread, along with several message boards I've seen on the topic of labyrinthitis have been very eye-opening for me, and I mean that in a good way. I have a few specific questions, so I'll give a brief recap of my situation. About a year ago, the day after getting a blood test, I woke up feeling unsteady (not really dizzy, not vertigo, but the feeling you get after coming ashore after a boat trip.) These symptoms were soon matched with fatigue, a general head fog and eye aches (which were solved when an ophthalmologist noticed that my eyes were drying out and that I should apply fake tears.) The symptoms would come in "spells" which could last, in differing degrees, for weeks. This went on for months, I saw several doctors and neurologist, none of them really had an explanation -- the last possibility they raised was migraines. About six months into it, I generally started getting better, and eight or nine months into it I was somewhat back to normal, though occasionally the spells would hit me. One event I recall occurred after I got through the initial hump: I was at a movie theater and I was upfront sitting in a chair that leaned back kind of funny, so for two hours I was seated in this rather abnormal position. And after the movie, I felt semi-nauseous and generally unsteady. Then, about three weeks ago, I was leaning down to check to see if my car was leaking --- in a sort of strange position where my head was lower than the truck of my body and turned --- and instantly I got the unsteadiness and head fog, and was hit with fatigue later that night. It took me about a week to get back to normal. Then, around a week ago, I found myself in the same position rifling through some newspapers to be thrown out. I didn't instantly get the feeling, but it did show up within an hour. My general sense, from everything I've read, is that this is labyrinthitis (or similar inner ear issue.) And what I seemed to notice is that putting my head in this awkward position would bring it on. I'm curious if anyone else has experienced a similar "trigger?" If so, why? (I've read about calcium deposits moving around in your ear etc.) Thanks for any insight, and I can't express what a relief it is to see people talking about symptoms identical to mine after receiving blank stares from the medical community. Wil |
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Hi all, Boy have I had a rough couple of days. We had a terrible rain storm with really strong winds. The winds were so strong that 100s of trees were blown down and took down power lines and landed on people's homes. I was without power, water, phone for 2 1/2 days. Brrr it was cold! It rained here for 3 straight days. I really think that the barometric pressure and the fact that I had just gotten over a cold and had residual phlegm made my symptoms come back. I have to say that I had to take a Xanax just to get my head to stop swirling. I wasn't nervous thank god! I just have to have faith that I will go back to the way I was feeling., Gloria, great idea to mark down how I felt and why and how long it lasted! Thanks Welcome all new people! You have found a wonderful bunch of people to vent to. Melissa |
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Hi all, Andy - those exercises sound fine. Also try doing them walking with heel to toe. Really test balance and co-ordination. To start I was rubbish - all over the place. Doing these exercises do help, but whether it makes this go away more quickly - I'm not sure. My VRT physio told me to do the exercises 3/4 times everyday for about the same time you are doing now. Walking is the best thing. Like you - to go for a walk just helps me to relax a bit and take my mind off how I am feeling. The private consultation, which I did only because I was so anxious as to what was wrong with me. I had an MRI done which was clear. They check for nasties but can't really tell what damage is done to the inner ear. Then I was referred to the VRT physio and now a neurologist to help with my muscle spasms in my head and neck and shoulders. This all has worked out horribly expensive and our life savings have dwindled. The only plus is that all the treatment I've had has taken place more quickly than waiting for the NHS and as you say getting an official confirmation of your diagnosis does help. My GP gave me a referral letter to the private ENT consultant and got an appointment within a week. Has your GP given you a name of a private consultant? Keep us posted on how you get on Andy and keep positive. Sandie - how lovely to hear from you, but sorry that you are having a bad time again. I do think yours will be affected by being menopausal - my friend experienced similar dizzy spells whilst going through that phase, but only because of that and hadn't had any vestibular probs. Bad enough but to have to deal with both problems. What did we do in our previous lives Sandie to deserve all this rubbish?!!!! As for me - the dizziness is now less - not non-existent though, but as you've probably read am having so much trouble with my head, neck and shoulder muscles trapping all the nerves. I can hardly turn my head. I had a relapse just a few weeks ago and unlike when this came on last year - the dizziness just spasmed all my muscles. So the tablets are to stop me feeling the muscle pain and trying to relax everything because the vestibular system apparently cannot improve until the muscles are more relaxed. Sandie, how have you coped with this for so long? Mind you, I would just love to have a clear, totally symptom free period. Now 9 months and it's getting me down big time. As you've seen, the neurologist told me it is not a life sentence and he hasn't known anyone with it for more than 2 years at the most - shall I introduce you to him LOL?!!!! We're off to Cornwall in 2 weeks - can't wait. Don't care if I feel rubbish. We have rented a little cottage over-looking the sea. The long range forecast looks good - so maybe that will help. Have you got any time away booked Sandie? Anyway let us know how you're fairing and I hope feeling better today than yesterday. By the way, still haven't got around to the front door - first on the list as soon as the weather gets better - what was the paint you used? Speak soon Love to all Gloria xx |
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Hi Gloria It's the pits, this menopause thing. I have had dodgy periods for a while now and even went about three months without one last year. I soooo wish I was through it all and then hopefully once everything has settled down I might get rid of all this junk! Trouble is, it goes on for years and years! You can be in peri-menopause for about ten years and then another five years for menopause itself! Bummer! Your neck sounds so painful - it can take a long time to recover from all this muscular stuff - I do hope the pills work for you. I have suffered from a 'dead' shoulder for months now but it only bothered me in bed when I slept on that side. However, my lovely little daughter and I had an arm wrestle contest two weeks ago using that side and she nearly killed me. Super strong my daughter is! But, since then I am experiencing terrible pain right down to my elbow and I unwittingly turn over in my sleep and wake up crippled with pain. It's not fun. Also, talking about the neck, I have never experienced pain like you but I do get this weird crackling and crunching from time to time. I also hear a noise like when you rub dry onion skins and that used to scare me but it has been happening for years and I have put it down to wear and tear of the ligaments (or whatever is in there!!). I also get a weird sensation in my head where I can hear this sound like bubbling going through a vein and - this will scare you - it happened the other morning when my daughter was in bed with me for a cuddle and she heard it. That has freaked me out a bit and she said that she often hears it when she is close to me - what the hell can that be? Haha, I like what your neurologist says about the two year thing. He is right some people do get over it in two years but I read somewhere a couple of months back that they were now saying five years. A lady who used to post on here a couple of years back called Anna - she had had it for about 30 years! But don't let that frighten you Gloria because as you know I do have a lot of good days and even weeks and it doesn't control my life all the time. Good on you for booking your trip to Cornwall. You have the right attitude and you might as well be dizzy there as at home. Fight this monster and you will win! My son has an internship up at Aberdeen starting at the end of June, so we'll be popping up there and we have our main holiday booked for Scotland this year (again, but we love it). Something to look forward too. Gawd, I just got my first lot of bedding plants delivered today and it's still so cold!! Don't know what I am going to do with them, it's too cold in my cold frame for them! Gloria, the paint I used was Dulux Weathershield exterior satin for wood and metal. It's quick drying so you can shut your door at night, self undercoating and weatherproof and it's guaranteed for 6 years. It's stood up to this awful winter we've just had and I only put one coat on. Really nice. Take care Sandie xx
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Well I started VRT today. I woke up with a migraine and I already have a cold so I wasnt feeling my best. The therapist was really nice and said she had treated a few dizzy people recently. I didnt get the feeling she was an expert in vestibular disorders because she is a general neuro physio but she did explain the balance system to me and showed more compassion than the ents! I have been given a few pages of exercises to do, pretty standard ones everyone on here is doing anyway. She stressed that I need to spend 30 mins a day on them and to do them fairly slowly to allow the brain to process the information and therefore recalibrate. I see her again in a week. Gloria - i sympathise with the neck pain although yours does sound dreadful. I was told that the neck muscles are all affected by this and she could feel mine were tight. Complete normality within 2 years like your neuro said would be great but its hard to have faith in all they say as you said Sandie has had symptoms for five years and likewise for Ilia and Emma and loads of others in fact. The thing we can all take comfort in though is that it should improve rather than get worse with time like many illnesses. Sandie and Melissa sorry to hear you are having mini relapses. Hope they are short lived and you start picking up again soon. Andy - hope you see some improvement soon. Take care everyone xx |
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Hi all, The sun finally came out today and it was a lovely 70 degrees F. I am a bit swirly headed still. Mostly when I sit still. I have good friends coming to stay with me tonight and until they get power back on. So I have been so busy grocery shopping, cooking, cleaning and baking St. Patty's Day cupcakes for my daughter's class party tomorrow. I'm trying to be optimistic about this relaspe. Wouldn't you know it, it had to happen when I am no longer in physical therapy! Just my luck! I feel better than yesterday. I just hope I can go back to how I was. I literally had two straight months with nothing. I'm working on keeping my faith! Jemma glad that you finally got into VRT. Gloria ice ice baby! Remember to ice your neck and try to take advil everyday. It does help. Not for a long time though. Just a few weeks. Keep the faith Melissa |
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Well, I've now had my ENT appointment switched to a private one, which means I get seen next Wednesday! A big improvement in itself. Having felt slightly better Monday and Tuesday, today I feel like I've taken another step back, everything just feels more weird all round, not helped by the fact that I woke up at about 4am this morning and couldn't get back to sleep! Has anyone else found their sleeping patterns get really disrupted by this? I can get off to sleep at night just fine, but once I wake up that's it, no more sleep for me no matter what! Gloria, what exercises do you do heel-to-toe? To be honest my balance feels pretty decent these days (and I suspect it was never great even before all this!), it's my vision and the various weird feelings of motion or just general oddness in my head that really get to me and grind me down. |
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Hi Everyone. Happy Paddy's Day! I just wanted to check-in and say hello. Things seem a bit different on here lately. Some of the people who were quite bad off in early February seem to be feeling better, and then there's poor Melissa with her relapse. Melissa: It's the nature of the beast. You've done so well for 2 months; I'm confident that it's really going to stick soon for you. Call your VR therapist this week if you need another session. I've been doing really well since 26 February. I hate to put that in writing, but I've been feeling great. I can't complain. I would say I'm about 98% most days. Some days 100%. Even the ringing in my ear has subsided and I have been sleeping without my white noise machine at night. I've been doing my VRT exercises at home religiously, so I give that a lot of the credit. The brain fog has lifted and I've been able to work and stare at my computer monitor all day long without the swaying and bouncing and slow-head feeling. Another positive sign is that I have a bad head cold right now and it has not had any effect on my dizziness. I wake up every morning and brace myself for the dizziness to start, but it hasn't. My ears are so congested that I can't even "pop" them and equalize the pressure (which is driving me nuts), but it's not bringing on any symptoms. Nevertheless, I was sent for a CT scan last week and I have an ENG and an ECoG test tomorrow. My new ENT is doing a good job looking for answers and my VRT is working, so I am feeling very grateful right now. Hoping it sticks :) Jess |
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PS Andy H: of every labs story on here, your description resonates the most with my own experience. My labs started in late October 2009. I too work full time and feel my worst at work. I feel best when I'm out walking or--funnily enough--riding the subway. It's when I'm still in front of my computer I felt the worst. As for sleeping problems: you sounds like you have anxiety (understandably). I can fall asleep no problem too, but stress and anxiety wake me frequently. Sometimes I take a valium at bedtime to help me sleep better. It's not the labs disrupting your sleep; it's your subconscious feeling anxious. Do you exercise? Maybe try jogging after work too. |
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Happy St. Patrick's Day to all concerned too!! Don't think I'll be imbibing any alcohol to celebrate though!! Just got back from VRT physio. Like the neurologist said, for me now it is the imbalance causing the small muscles in the back of the head and neck to spasm. The nerve that runs from the inner ear to the brain stem is like a healing wound and for me that is why it is so sore at the back of my head. She thinks I have probably had viral neuritis - ??? The medication I am on she says is a good thing to release the pain signals from the muscles which will help everything settle down. Do you know, I wish I understood all this 'brain/neuro' speak. All I know is my head and neck hurt, I still get swirly headed and just want it to stop. Simple!!! Andy - brilliant that you've got your private appointment and even better that you have had a couple of good days. I never know whether it is good to have good spells because it makes you more depressed when you revert back again - but that is the nature of this beast. The heel to toe stuff is walk in straight line, looking ahead doing h-t, then do the same but walk h-t turning your head from left to right and then up and down. Then, if OK then do the same but with your eyes closed - that's when it gets interesting, well it was difficult for me. My eyes apparently were compensating for my balance which is why the physio got me to do the exercises with eyes shut. The trick is that when you feel unbalanced or dizzy, open your eyes immediately and just straight gaze for a minute to stabilize you balance. Let us know how you manage and keep us updated when you have had your appointment with the ENT. Your sleep pattern is very normal with this. I certainly found I couldn't sleep more than a few hours. If it gets too bad then maybe ask you GP for something. I never thought I would have to resort to taking the medications that I have recently taken (amitriptyline - great to help with sleep but no good for me in helping with the stress/anxiety issues). The Gabapentin I'm taking for the muscle pain thing seems to be OK in the fact I haven't reacted to it, which I do with most medications. I'm still titrating up to the full dose though -so we will see. I do hate taking medication but when needs must and I'd advise the same Andy. As this thing does drag it's heels, some of us have needed extra help to get through - no shame in that. Jess/Melissa - great to hear from you both. Jess - sounds you are on a roll girl. Hope and pray it continues that way indefinitely for you. Melissa - Cannot believe how warm it is where you are after such awful winter snow etc. We are having a couple of really nice days - not as warm, but can leave the coat off. Sounds like you have also recovered to a better stage than before when it would be awful for days on end? We do keep going through all this don't we? Shopping/cooking/entertaining/ looking after everyone - you just have to get on with it although sometimes lately I have felt the effort has been too great. Just got my new bicycle today. Had a go in our car park outside the house - felt really wobbly afterwards, so maybe good VRT again? My physio also suggested skipping or jumping up and down on a small trampoline - this is all getting quite ridiculous but I will do it because I think if I don't, then I'll be burdened longer with this. Sandie - how are you today? Have been thinking about you and hoping things are on the up and your relapse isn't lasting as long as before. You see - you will have to go get a skipping rope?!!!!!! Take care all, Love, Gloria xx |
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Jessica: I haven't been on any other forms of transport of late, but I certainly feel fine in the car (driving or as a passenger), it's better than sitting here in the office that's for sure! It's good to hear you're doing well though... I wish I could say the same considering I've had this problem the same length of time as you! Out of interest, how slowly do you do your VRT exercises? (A weird question I know!) I sometimes wonder if I'm rushing mine and doing them too quickly. |
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Andy: my VR therapist says to do the head exercises as fast as you can, but without the letter/word you're staring at jumping or blurring. It has to remain steady in your vision. If it's jumping around, slow your pace down. Also, I'm only supposed to do it twice a day for 90 seconds at a time. Take breaks between your exercises to get back to your baseline. I do the head shaking, balance exercises, and walking while head turning exercises 2x a day. |
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For those of you who stopped swaying/ moving when still 24/7, how did it stop? was it sudden or gradual, Did you wake up one morning and it was gone? |
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Hi all, Happy St. Patty's Day!!!! I went to see my GP today. She said that I have fluid in my ears (no duh) and slightly ruptured membranes in my right ear. That is the ear I had labs in. She asked if I was coughing last week. I said that I was and she feels that is how they got ruptured. She also said I have a sinus infection. She gave me a script for antibiotics and hydroclorathizide. It is a diuretic. She thinks that these medicines should help clear up the fluid in my ears. Cross your fingers please. I knew that was why I was feeling that funhouse feeling. I especially feel it when I bend down or turn my head to the side. Oh she also asked if I had popping or cracking in my ear last week. I did. I know that some of you have mentioned that you have had that before. So it is fluid in your ears. Jessica, I'm so glad that you are feeling better. Andy, when I was at my worst, the only place that I felt better was in a moving car. So strange. S, the swaying and rocking for me went away about 3 months into labs. It was very gradual. Then I had the feeling I was walking on a funhouse floor. Almost like the ground was moving under my feet. That lasted 3 months. I am at the 10 month mark now. I just had two months symptom free. I caught a cold and now I have the funhouse feeling. If you read above, you will see why. Melissa |
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Hi Everyone: Haven't posted in quite a while because I have been completely symptom-free (yeah!) for 5 months. But as many of you know, I had this thing for exactly two years. Those of you who are suffering from this, it will get better, but there are lots of ups and downs with it. The thing I did notice that the good periods got longer, the bad periods shorter and not as severe. But I will never forget that first year. And with every good patch, you will get a little more confident, although I know just how dreadful the bad patches are. Keep the faith everyone. Maria |
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S: It's hard to say for definite because of the way it comes and goes, but I'd say my swaying/moving sensations are going away very gradually - Certainly, I don't have it 24/7 (or at least I don't notice it), although I still have it a lot of the time. Maria, thanks for coming back with an update! It's great to hear a positive story, even though it took you so long to recover. |
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Maria - so good to hear from you. Do you feel completely over it now? It is so reassuring to hear a success story. Did you have any VRT Maria? I am coming up to a year now and I feel I have improved but like you say so many ups and downs and my ears are still clicking and blocked etc. How is everyone else today? Jemma xx |
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Maria, Thank you for your post! It was so nice to hear from someone who recovered from this disaster. Thank God for modern medicine! I feel so much better after just two days of the antibiotic and the water pill! Yeah!! Now I know what to do after I have a cold. I have so many things to do today. Have a great day all! Melissa |
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Hi Gloria - viral neuritis, just means that your problems were casued by a virus which is what Labs is. Neuritis/neuronitis or vesitbular neuronitis is the same stuff. Labs usually has hearing loss and the damage is done inside the inner ear. I don't know how correct this is because I don't have much faith in the ENT but I was diagnosed with Vestibular Neuronitis/VN after numerous visits to the ENT. They said that I probably had damaged nerves just outside the inner ear. They came to this decision because I was still suffering with balance problems about nine months after the initial attack. However, VN and Labs are much the same and give off very similar symptoms which is why most dcotors do not distinguish between them. Oh, and I didn't have any hearing loss at all which might be another pointer. Did you? Gloria, today I feel really good. I got my 'monthlies' today and it seems to release everything and I feel nearly normal again! During my time with this condition I have always been worse at this time of the month but over the last 6/9 months my symptoms have gotten terrifying a few days before. But, that's ok - I can cope as long as I know I am going to feel better soon! I have been for a long walk today and although it is a tad windy, it is so warm. Coat off weather as you say! Even had my flip flops on as I'm so sick of wearing trainers. Haha, I can just imagine you on that trampoline! My daughter had one three years ago in our old house but there is no way you would get me on there. And a skipping rope - forget it - do you want me to kill myself - lol! S - the swaying feeling for me comes and goes. I have had this for five years and for the first couple of years it was with me constantly apart from when I was in bed. I get months where I don't have this feeling and then I relapse again but don't worry about it - it is something that you eventually get used to. I have had it all, dizziness, vertigo, marshmallow feet, swaying, walking to one side, and feelings like the earth has moved etc. Such fun - NOT! Hey Maria, so good to hear that you are feeling well. I've haven't been too bad so far this year, mostly, as you've probably read, just at 'that' time of the month which is getting further and further between times (aagh I'm so old!). Anyway, nice to hear from you and I hope you continue to feel good. Take care Sandie xx |
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Hi all, Maria - so lovely to hear from you. Fantastic news that you have had 5 months feeling normal. I echo Jemma's comments about whether you feel you have got over this completely? Hard to tell I suppose, but in the last 5 months do you feel 'different' than you did over the last 2 years, which, maybe gives an indication of recovery? Isn't it weird how we all have related to feeling better in a car - maybe I could go and live in one that moves constantly to make me feel better LOL!! For me I just do not feel normal. Dizziness/ wooziness is better but the ton weight on the head feeling is horrible. The tablets I'm taking seem to help a little - so some result I suppose. Jemma you are a little ahead of me in the time frame and it sounds like we are coming out of it, but still with symptoms of some sort or another. Do you feel 'normal' yet? Andy/Melissa Sandie and all - hope you are having a good day. Andy - tried the heel to toe stuff eyes closed yet? Went out on my new bike last evening just around the block. Corners were a bit of a problem, but did seem to help for a little while after - so Tour de France here I come!! Onwards & upwards, Love Gloria xx |
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Hi Gloria I wouldnt say I feel normal yet. I am probably closer to normal than I was at the beginning but I still feel off most of the time, by that I mean off balance to varying degrees, drowsy or a bit spacey and still have clicking in my ears, an achey neck and sometime trembly muscles. Also i have the intermittent heart racing/anxiety thing. I do get occasional moments of complete normality - very rare. It is sooo nice having a steady focused head for those moments, it makes you remember how you used to feel. Melissa - i think i have fluid in my ears after my cold. They are so noisey, its like having a creature living in there, i am trying sudafed decongestent to see if helps. Take care everyone, ownwards and upwards xx |
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Gloria, I was much better today, thank the lord! Jemma, as crazy as this sounds, I googled fluid in ears and they suggested to put hot compresses behind your ears. I tried it last night and it did help drain the fluid out of my ears. You can actually feel the fluid drain down your throat. Kind of gross, but I just want it out of my ears!! I also took a prescription called hydrochlorthizide. It is a water pill and very benign. I feel no side effects. It really has helped to drain my ears. Check with your doctor and maybe you can try it. It is a beautiful spring day here. I'm outside watching my daughter ride her bike. How very far I have come in this ordeal. She learned to ride a two wheeler last summer when I was so sick with labs. I couldn't even enjoy watching her. It is so nice to sit here and watch her ride around our dead end street!!!! It's little milestones like this that remind us how far we all have come. Gloria, we have a trampoline in our backyard. I may just go out and jump on it! I'm afraid I might throw up though. Everyone just remember how hard you have all fought to get better. Never give up your fight! Just think back to 6 months ago. How bad were you compared to today? Keep asking yourself that and you will realize that you have healed. Maybe not to where we all want to be, but certainly where we are living and moving and going everyday!!! Okay that's it for my pep talk. Keep the faith! Melissa |
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Jemma, I definitely know what you mean - I get occasional moments (or sometimes even an hour or so) where I feel almost entirely normal, or just a bit tired but nothing else - It's certainly a bit of a boost, although I always then seem to slowly slide back into feeling weird again which is equally as depressing. Overall, this week so far has been one of my better ones, but I still feel so far off being "well" that is seems almost perverse to call it a "good" week! Gloria, I have been trying a bit of heel to toe walking - Funnily enough, this morning was the first time I managed it easily even with my eyes open! With my eyes closed, I still lurch around like a drunk though. |
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So, I had my ENG yesterday. Did anyone else find it a complete waste of time (and money)? The woman who conducted the testing was really rough and did not explain anything to me. At the conclusion of the test she says to me "you have a vestibular dysfunction in your right ear and that is whey you are dizzy." I said, "In my right ear? The ear I've been deaf in for 30 years?" "Yes. You'll have to ask your doctor what he wants to do about." So I said, "You're telling me there's nothing wrong in my left ear, the ear that had the motor running in it and now has tinnitus and fullness?" She tells me no, there's nothing wrong there! That's when I decided that that test was a waste of time. Unless having a vestibular problem in my right ear is somehow more significant than being deaf in my right ear, then I think she's pretty clueless. I just hope my doctor doesn't buy it. Any thoughts on this "revelation" anybody? LOL |
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Jessica my vestibular tests showed no problem with either ear. I was told I was 'perfectly' normal in that regard and the guy concluded i did not have an ear problem at all!! Despite having clicking, fullness, noises in there and feeling dizzy and off balance all the time. It was only when I saw the neurologist that he said the tests only actually test about one fifth of the balance system so you cannot rule out an ear problem based on these tests, you have to go by symptoms as well. It sounds like what may have happened with you is that you have had a longstanding problem with your right ear but which you were used to and had compensated for but then if something (even something very small) has happened to your left ear then this could throw your vestibular system out again. I have seen loads of ENTS who just tell me my ears look fine but fail to explain why i hear them clicking and crunching all the time when previously they were perfect and before all this never gave me a moments trouble in my life! Very frustrating! Jemma xx |
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Jessica, This is sounding quite familiar. The first ENT I went to didn't do those tests on me. She just gave me a hearing test and some other easy things to do. Then I decided to seek another opinion. What a waste of time and money! He told me that everything looked fine. If I was still having "vertigo" then I must have menieres disease. LOL I told him that I don't have spinning vertigo, that my "vertigo" was just like the symptoms of labyrinthitis. He had no idea what I was talking about. He told me to come back in 4 weeks to do a bunch of dumb, waste of time tests. I didn't go. Really what can they tell us that we don't know already? As far as why it showed in your right ear, maybe it did just because you already have damage to that ear. Most of the people on here have had those tests and had nothing show up. So I bet nothing showed up in your left ear and the ear that was already deaf showed damage. That is my theory. I HATE some of these doctors, medicines and tests!!! I have been sooooo much better today!! Each day since I started taking the antibiotic and the water pill, I have felt better and better. I even had myself a glass of wine last night. Whoo Hooo!!! Andy H, I still check myself each and everyday, all day! I think to myself "Hey, I don't feel anything right now." Or "Hey, I just made it through the grocery store with no symptoms." Or, "Hey, shit I feel a bit swirly." I don't know if I will ever be able to just go about my business without checking how I feel! Have a good weekend everyone. It was a sunny 74 degrees here today! Melissa |
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Hi everyone, You all echo my experiences last year of what I was told by the ENT and doctors. My MRI showed nothing except a few brain signal changes relevant to Labs ( what the report said). Nothing showing in my left ear (the problem ear) but there was some fluid in the right ear (not a problem ear). So like you Jessica - it leaves you wondering if it is you that is going mad. Melissa - your little lecture is so bang on. If I look back to last year - horror of horrors. OK, so now still don't feel 'right' but I couldn't be doing what I do now last year. Certainly I feel now my brain is still trying to compensate. Rather than feel dizzy now I am woozy, slightly swaying and for me of course as you know my head muscles are badly affected trying to keep my head straight. I just have to patient and try to think that one day this will all be a memory - not a good one though! Andy - even a slightly better week than previous weeks is still an encouragement. Know what you mean when you describe a week as being good but in reality it isn't! In the realms of having labs, we are all just grateful for little glimmers of normality! You are getting there Andy - honest! Good luck with your ENT appointment on Wednesday - do let us know what happens. Jemma - I remember my ENT consultant saying that all the crunchy sounds etc in the ear are because when the ear has a vestibular disorder i.e. labs - the pressures are all off in the inner ear which causes pressure against all the little bones of the ear - hence the fullness feeling and the noises. Just a quiet week-end for me - looking forward to Cornwall week after next. Anyone else got plans for holidays? By the way, asked my VRT physio about flying - she said at this stage in labs (9 months plus) should be no problem at all, maybe a bit more pressure in the ear but the old sucking a sweet or swallowing hard would do the trick. Still can't afford to go anywhere abroad - so I shan't find out if it is trueLOL!!! Good week-ends all. Love & hugs, Gloria xx |
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Gloria, Thanks for asking her about flying. We leave for Captiva Island on April 10th. I'm going to take an antivert and a valium! LOL I just don't want to take a chance with my ears. I hope it doesn't hurt them literally. Been fine today. Went to a friends last night to celebrate my birthday, which was in December. I got home around 1am. This morning I ran 4.5 miles and took an hour yoga class. I'm just tired now and a bit swirly. Not bad though. Again, thank God for modern medicine! Melissa |
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Hi everyone: thank you for all your posts. I have missed you all, of course It's my own damn fault for not posting. Just want to get back to a few of you. Jemma, yes I had VRT with a very good lady who only worked with vestibular patients. She was great. But of course, buy the time I went, I was starting to get over it anyway. Gloria, I do feel I'm completely over it, although who really knows with this thing? But I do know that for two years, I never felt completely normal. Always a bit off on good days, and just plain awful on bad days. But never normal. Now I feel completely normal, (never thought I would ever again), but last summer and the summer before were really bad (the humidity maybe) so if I can get through the summer without any problems, then I know I have kicked it. If not, well at least I was fine for a very long time. I'm wondering if my short time on the diuretic did it, because it seemed to go away after that. The doc said it was a longshot, sometimes there is fluid buildup following an illness likes labs, and so he was willing to try it. Jemma, I can't believe you are already up to a year, I remember when you just started, and you were having such an awful time in the beginning. You do sound a lot better, and great to hear that you have been so much better. Gloria, this thing is endless, at least it seems like it, but it will go, you will see. Sandie, good to hear you have been okay most of this year. You don't want to stop your monthlies too soon, you will start to shrivel up and start having bone loss and stuff like that. I finished with the Menopause, but I notice I have more wrinkles. So I am plastering all kinds of night cream. anti-wrinkle cream, serum, moisterizer, never used to. Oil of Olay, Age Defying, that's it. Remember that when you get even older. I don't miss my monthlies but at least it kept me young. Everyone, keep up the faith. You are not alone. Remember this illness is not life-threatening, evn though it controls your life ocmpletely. I feel like I lost two years of my life, it was so hard to plan things. It's a long hard road, but you will get there. Hugs, Maria |
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Well after thinking I was improving a bit I now seem to be having a relaspe. I am still full of a cold and my ears do seem to be very clicky but i feel so spaced out, dazed and woozy, it is really scary. I just dont know what to think anymore. Maria so glad you feel like you are totally over it. You must be so relieved. I thought I was seeing some light but now i feel like im back to square one. How is everyone else xx |
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Hi Maria Haha, I can just imagine you with all your anti wrinkle cream!! I'm only 49 but my mother was well into menopause by now. I still get periods but they are getting farther and farther between. I didn't actually get one last week it was a false alarm so I am well overdue now! Luckily I do look a lot younger than I am (or so THEY say!), so I won't be using anti ageing stuff. In fact I don't think I ever will - I have a friend who was 50 when she started to use the Olay anti ageing cream and she looked absolutely fine at the start - had lovely skin and looked younger than she was but now at 52 she looks every bit her age and more! Her skin is awful - so was it the cream or natural ageing - lol! Anyway, I am so glad you are feeling good and hope you don't have any symptoms over the summer months - ooh roll on summer - it is so cold. My son is back from Oxford and he says it is freezing up here in the N.E. compared to down there. Take care everyone. Sandie xx |
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OMG! Have just had to make a shopping trip shorter. Never happened to me before, but as I turned around everything went topsy turvy - very very quickly - and if it wasn't for a pillar by me I would have gone onto the floor. That has so scared me. I've only ever felt swirly headed and/or dizzy but in control of my balance. Sandie - just know how you feel now. I felt off yesterday and today my head is just plain strange. Now have got that wobbly, shaky feeling. So - not over this yet then?!!!! Maria - thanks so much for your encouragement. Especially today I need to read your post to keep me strong. I am not going to let this ruin my holiday next week. Even though I feel rubbish, I am carrying on regardless - wasn't that one of those comedy 'Carry on' films?!! Not that I feel in a comedy mood today I can assure you. Hope everyone had good week-ends. I am so trying to keep the faith and tell myself this will go. SCRRRRRRRREEEEEEAAAAAMMM! Hugs, Gloria xx |
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Hi gloria i know just how you feel, i posted earlier but not sure if it got through. I too have had a relapse. dont know if its the cold I am still fighting - this is second time i have had it now! but my ears are so clicky and my head is so woozy I feel drunk and dazed again like the beginning. god this is so scary. Just when we thought there was some improvement too. it is too much to bear at times! xx |
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Hi All. Not posted for a while as i have been fairly busy with things at work and at home.Went to the races last Saturday with work 28 of us to celebrate my pending 40th, and i managed 1 glass of wine....and i was ok, but yesterday i was abit swirly headed so i do think that has something to do with it. I cant complain though as this is the longest run of feeling ok ( 6 weeks) now since i started with labs april 2006.Not so muzzy head not so forgetful not so bunged ears and nose and not so lightheaded..so fingers crossed... Gloria..i feel so sorry for you just as you start on the up you are knocked back down again, keep smiling, are you still taking the tablets? Jemma and you honey..what a shame you were doing so well, thats what i hate the odd head feeling as if i cant focus on anything. i see from your post you had glass of wine too do you think that may not help as i am putting my relapses down to when i have red wine...i know it sounds daft... Shirley, Gary, Andy, Jessica hope you are all keeping ok...hope you are ok. Take care all keep the stress levels low and we will all plod on together.. Penny x |
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Hi Jemma, Sorry to hear you are not good again. You have described perfectly how I feel as well - woozy, drunk & dazed. Like you too describe Penny - that not being able to focus properly and feeling lightheaded. All this and not a glass of wine in sight! So glad you are having a good run Penny. Where did you go to the races - was it Cheltenham - and, more importantly did you win?!!! How pending is your 40th?! Sandie - you are sounding more up-beat. Are you feeling a bit better now after your blip? Can't believe your kids are back home again. It only seemed like they returned after Christmas (is it 1 or 2 at Uni?) Well, it is under the duvet time for me and hope tomorrow will see me on the 'up' AGAIN. I feel like one of those church fund- raising thermometer boards - never seem to get to the top LOL!!!! Maybe one day normality will reign again! Love & hugs, Gloria xx |
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Hi, Well cross your fingers, I have now been symptom free for 4 days! Yeah! I think the antibiotic and diuretic worked. The only thing I feel tonight is a bit of my heart racing. Not sure why. It is raining here in New Jersey. We've had beautiful weather for the last few days, so I can't complain. I absolutely love all your British sayings! Just for fun I'm going to translate to American slang: Duvet = covers University = college plod = move slowly daft = dumb rubbish = junk holiday = vacation monthlies = period No wonder you all sound so nice when you speak!! You are using all the proper words to describe stuff. I love it! Maybe this had made some of you laugh. Even a minute of smiling may cheer you all up. By the way, check with your doctors about a diuretic. It may just help. Melissa |
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Hi everyone. melissa glad you are on the mend, didnt know you were in New Jersey we have friends living there. love the translations!!! Gloria we went to our new local race course Ffos Las and i won bu not enough to cover my bets...so really i didnt win but we enjoyed.April 1st my 40th yea ok dont laugh!! I am still ok nose a little blocked but i can cope with that. take care all Penny xx |
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Hi All, It seems wierd that some of us are not feeling the best after feeling better. I have also taken a step back for the last couple of weeks. I've had 2 good days during those weeks, both strangely enough on a Sunday, no idea why. I've had some new VRT exercises from my physio so I'm wondering if its this. She also gave me some neck exercises as like you Gloria I suffer from neck pain but she reckons it's part and parcel of labs. I did these for one day and on the same day felt the old dizziness come back and it hasn't left and I'm back to having it 24/7. Therefore I haven't left the house and I'm back to having no confidence that this thing is ever going to go. Lovely to hear on here that its got better for some, Melissa, Penny, Maria. I so hope I will be able to write the same thing one day on here. Today I had a visitor that decided to stay and chat to me all day. Now I know this is lovely and I do like the company but I found it so tiring. Sounds silly but I'm not sure if it was all the concentrating on what he was saying that did it and also trying to sound inteligent (hard job these days ha ha) and not stupid like I'm feeling now. I'm having so much trouble concentrating these days. Also tomorrow (wish me luck)I have got a telephone interview for some telephone work. Years ago when I was on my own with 2 small children I worked on a psychic line and as I am now in desperate need to earn some money I thought I would go back to it. Now I haven't done this for a number of years and haven't even touched my tarot cards for at least a year. I was going to get the cards out today and brush up on them but what with my visitor I have been unable to do so. This means I will have to get up extra early tomorrow and brush up on them. But the way I am feeling at the moment with the lack of concentration I really don't think I will be able to get through the interview and I desperately need to get this job. Fingers crossed for me everyone. Melissa - I loved your american slang. I have some good friends who live in Arkansas and I visited them last year. They got a big kick out of my accent but also took the P out of the way I said things ha ha. We were visiting New Orleans LINING up to go into the Sea World centre there when I said I would join the QUEUE .. they had no idea what I was talking about and said it's not a word they use as they would say LINING up. Doesn't sound so funny writing it but it did give us a laugh at the time. Keep the faith everyone .. I really am trying hard to, hard though it is. Shirley |
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Hi all, Shirley - great to hear from you! Doing different VRT exercises will make you a little worse because the brain is being challenged further and isn't used to the new exercises.. Also, if you do any muscle stretching exercises, this alters the tension in the muscles which again challenges the brain and our balance. I, like you, felt worse after my physio and my VRT and my VRT physio explained the reasons. It is quite incredible to think how the eye, muscle, balance and brain co-ordination has to be so finely tuned to work properly and anything that upsets that balance when the inner ear has been damaged is amazing really. Again, like you at the beginning of my labs, I had friends call and it was such hard work. As you say, to concentrate, look interested, whilst your head is going into overdrive was all too much. You do sound much more positive Shirley than a few weeks back which is great. Some days are easier to cope with than others, especially when you have other 'life' stuff to deal with as well. I wish you well with you interview - psychic reading sounds very interesting. Years and years ago when I was in my early twenties, a girl I worked with did Tarot cards. The one thing I do remember that she said was that I would have to work all my life - well that has been pretty much true. And there was me thinking that I would marry a rich man, not have to work, have 2.5 kids, lovely house and a dog LOL!!!!!! You clearly have a talent Shirley and I am sure you will do well - be positive and have confidence in yourself - you have done it before and you can do it again. Let us know how you get on. Melissa - glad to hear you are doing fine - way to go girl just hope you have more than a couple of months freedom! My one expression I get confused hearing in the States is the way you say 'route'. I think 'what is a 'rowt'! Penny - glad to hear you are dong ok too. I did venture and have a glass of wine last night - suffering today like I drunk 10 bottles!! Jemma/Sandie/Gary and Andy - hope you are all on the 'up' as they say. Take care all and good luck again, Shirley. Hugs, Gloria xx |
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Hi everyone I still don't feel great to be honest. I think this second cold has really set me back and made me woozy and exhausted which just makes everything feel like its going backwards. My neck is killing Gloria, I don't think sitting at a desk for 6 hours a day helps but as we know now labs affects all the neck muscles and seems to send them into spasm. My VRT therapist said balance is controlled by the feet, lower back, neck, ears and eyes so all need to be working in sync and like you said if one is slightly out it is incredible how bad it can make you feel!! i certainly never realised this. Shirley your tarot reading job sounds interesting. Good luck with your interview I do hope you succeed. I would like to know what my reading would be. Hopefully it would show a labs free future ahead. Penny - glad you made it to the races, you must be feeling reasonable so good for you! I havent had any wine since this started, dont intend to either as I cannot face feeling more woozy headed than i do already. Like everyone says I too find it really tiring and feel dreadful sitting talking to people and where possible I tend to avoid it. It is frustrating and I do feel alone sometimes but it makes me feel so bad I am almost scared to do it anymore. Melissa the diuretic idea sounds promising. Both you and Maria have mentioned this as a possible help for labs. I am not sure how I would get it from my doctor though. Is it a known thing they give for labs and does it have side effects? I do feel there is fluid in my ears so maybe this could help me... xx |
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Oh Gloria, welcome to my world!! It's not so nice is it? I must say that for my first six months with this I was just (just, ha), dizzy, feeling a little wobbly, anxious etc. I went back to work with the same feelings but much reduced after that first six months. But, the real horrible intense problems with my balance started much later. That feeling you just described is what I suffer an awful lot. At the beginning of what I call my 'relapses' I will get these feelings every five minutes or so and that is soooo bad. It takes me months to get back to what is now 'normal' for me. Gloria, I do so hope that you don't take my road -have you felt ok since that little episode? I have been a lot better lately. I went into town yesterday and we stayed for a meal at a chinese buffet and it was heaving and so hot. Not good. But I was absolutely fine (no stugeron). Today I was at the cemetary with my cousin, my aunt and my son and we were standing talking for a good while on a slight incline (I don't do ramps), and all of a sudden 'whoosh', I was nearly over. It passed after ten minutes, but that fear that you felt Gloria, it never goes away - it always terrifies me when it starts. Melissa, love the American words - you would die if you ever came to the North East of England! Good old Geordieland - you would never understand us. Shirley - talking to your friend and finding it difficult to concentrate is normal with Labs. I used to have great problems with people who had loud voices - aaagh! Good luck with the interview! Jemma - keep fighting girl - you will get there in the end. Take care everyone Sandie xx |
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Hi Jemma, Sorry to hear you are still not feeling great. No wonder we are all so exhausted - if you put all our stories together from the last few months and realise what horrendous sh*t we have had to cope with, it is a wonder we are sane at all. The neck thing is a nightmare. I said to my physio I don't know which is worse the dizzy head or the pain from the stiff muscles. Interesting that yours have started to be bothersome. I know you are a couple of months ahead of me, but maybe it it just another stage?! I am SO fed up with all these 'stages' or phases of this condition. The diuretic thing maybe worth a try if you have still got the fluid in your ear. I take a mild diuretic for my blood pressure and I haven't noticed a difference for labs, but then I have never had the fluid in my ears - just blocked, feeling full and tinnitus but no swooshy feelings. Off to watch American Idol tonight - are you in for this as well Jemma? Have also been following Married Single Other. So sad. The series started off a bit slow, but is really good. Anyone else been following? Anything planned for Easter Jemma? Try and do something different. That is why I can't wait for my holiday. Just to have a change of scenery hopefully will cheer me up. Take care, Love, Gloria xx |
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Hi Gloria Yes i do think the neck thing is definitely another stage of this thing. It didnt bother me like this at first and seems to be getting worse. I think it ties in with the VRT and trying to do more and all the muscles compensating. That said, i did have neck pain intermittently prior to labs because i have mild scoliosis and my posture sitting at a desk all day but the pain now is worse than ever!! When i think back to the start apart from the dizziness and off balance oh and the fatigue, my symptoms have changed. I used to have a really dry mouth and a funny stiff eye, then there was the tingling, waking in the night feeling dizzy, a couple of times feeling spinning at night, now I have a constricted feeling in my throat at times and the clicking in my ears which started in september. The neck pain is now getting worse, it certainly comes in stages and one thing morphes into something else. Bizarre!!! I have a week off work booked for the end of April and I am hoping to do something like you say gloria just for a change of scenery. I do hope your holiday is nice. After what we have been through this last year we all deserve a medal! and a few decent days holiday would be gratefully received... Jemma xx |
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hey everyone i havent posted here in awhile but i got some news from a new ent and i need some help bc i dont understand everything...well i guess i have tons of fluid in my ear and also have a thing called cholesteatoma which is like a cyst in my ear putting pressure to everythign and im having surgery to remove it on tuesday but idk if that will get rid of my dizzyness or not has anyone heard of this? ive been dizzy constant for 7 months and recently broke my ankle last week bc of it and im only 20 lol any help thank you |
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Gloria I so wish I was able to go away somewhere nice but it's not possible with A) got no one to go with and doubt very much I would be able to cope on my own, let alone get there, and B) can't afford it. Good news though: I got through my interview and now will be working, after discussing hours with them, for 33p per minute ha ha. The maximum I will earn per call will be �6.60 as they last a maximum of 20 minutes. Well its better than nothing :). To be honest I am thrilled to bits. I didnt think I would be able to get through the interview because of the lack of concentration labs is giving me at the moment. However I didn't even use my cards and just used my psychic abilities and picked up loads so just goes to show that labs does not affect this ability. It's made me wonder whether to go to a psychic healer. I'm wondering if anyone has tried this. I did get my friend, who is a Reiki master, to perform Reiki on me at the beginning of all this and to be honest I did feel better the next day, albiet short lived. He did offer more sessions but because he was doing me a favour I didn't ask him again, stupid I know. Anyhow still dizzy, but did manage a walk to the post box YEY !! I am going to book an appointment to see my useless GP and ask him about diuretics as I do suffer with the fluid in the ears and I do notice when it is bad like it is now my dizziness is 24/7. Take care all Shirley x |
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Brett- I have been reading the posts on this site for about a month but have never posted until now. just last night I came across the word cholesteatoma in my medical dictionary and was wondering if that is what I could possibly have, in the hope it could be fixed. The text reads as follows: An epithelial pocket or cystlike sac filled with keratin debris. It can occur in the meniges, central nervous system, and skull bones, but is most common in the middle ear and mastoid area. The cyst, which is filled with a combination of epithelial cells and cholesterol, most commonly enlarges to occlude the middle ear. Enzymes formed within the sac cause erosion of adjacent bones, including the ossicles, and destroy them. cholesteatomas are classified as congenital, primary acquired, and secondary acquired. Not too much help, but I,m sure by now you have done a search for information. Have you lost any haering? Please tell me how your doctor found this? Had you seen any doctors before this one? I hope your surgery goes well and you are cured. Good luck. jt |
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hey jt thanks for the input i have found info on this but not any info on if the surgery will get this dizzy stuff to go away which im praying it will...well i went to a neurologist my GP sent me to her and had some CAT scan done and they found a massive amount of fluid iin the mastoid area of the ear which is common but i had a massssiive amount which wwas not normal so she sent me to a ENT who found a cyst in my ear yesterday and told me about the surgery i asked if it would cure the dizzyness but he said he has operater tons of ppl on this but none of them had dizzy problems only hearing and yes i love 40% of my hearing i also had some ENG done awhile back idk my surgery is tuesday and all im hopiong for is that the dizzy can go away!! lol but i keep hoping for the best bc with the cholesteatomAS thing i heard u can actually become paralyzed fi untreTED SO i would recommend a cat scan! will keep updated thank you ! |
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Hi all, Good to hear from both JT and Brett. Now there's another thing I haven't heard of. Brett - I assume you had an MRI or CT scan to confirm your diagnosis? Has your ENT doctor said the cause of your dizziness is because of the cyst? I don't know for sure, but you probably may be referred to VRT afterwards if the dizziness continues in order to re-train your brain. It does work, but as you may have read on here it certainly helps, but you have to be quite resolute in doing the exercises every day. It isn't a quick fix and does take some months , but the brain is good at re-training itself. You should talk all this over with your ENT. Good luck with your operation. Shirley - CONGRATULATIONS! You did it! Clearly you are very good at what you do. You have an obvious strong connection in psychic ability and, therefore, psychic healing may help you. At the end of the day, a lot of us have tried all sorts, especially me. I've done all sorts of therapies (not Reiki though), Chinese medicine and acupuncture, aromatherapy, reflexology. All have given varying responses and lengths of time in some relief, but none have made this go away. I think we have labs for as long is will take which is a very individual thing. What is documented and I can see why and that is to be up-beat and positive. So very hard at times, don't we all know. But when I have felt more positive, my symptoms haven't dominated me so much. For me at the moment, I have a great lady who visits my house once a week and gives me a brilliant physio massage on my back,neck and head. Feels great - doesn't take my symptoms away, in fact at times makes me more woozy, but helps relax my muscles for a time. I also find my back physio great. She stretches out all my muscles that have literally become tight tight balls of string. So I will just carry on with this until I hope one day I feel normal - ha ha!!!!!!!!!! You see, already I'm not being positive!!!!! Jemma - you are so right - when I think back to how I was. My symptoms have completely changed - not good, but have changed which makes me think this thing is a 'phases' type illness. Onwards and upwards and forwards! Hugs, Gloria xx |
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Hi everyone. I just wanted to check in and to say that as of tomorrow I will have be at one solid month of feeling good! Most of these days I have been at about 95% my old self, but some days I've been 100%. I still have moments, particularly in low-lighting conditions, or the other day when I went to my GP and was sitting facing horizontal shelves of medical files. That got me feeling dizzy, but my head sorted it out after a few minutes. I also went to a card shop the other day to look for a card and the aisles of cards made me feel unfocused. But I will take moments like that over 24/7 dizziness anytime! At VRT yesterday they had me stand in a little room with moving walls and floor and the computer analyzed how my body responded to the motion. Anyone else try this? I came out below average (compared to people my age) for vestibular function and well below average for visiual function. Apparently that means I'm relying heavily on my eyes to balance me and it's not working. They also did some test where I read an eye chart as best I could from top to bottom, and then made me do it again while they shook my head 120 times a minute. I couldn't do nearly as well and my therapist said that there should only be a 5 line maximum difference between what I can read while still versus while moving. I guess I still have a lot of recovery to do, but I feel I'm finally moving in the right direction! Jessica :) |
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Hi Gloria - I did get back to you about that awful episode you had while out shopping but seems it has gone missing. What happened to you there is what happens to me all the time. For the first 6 months of suffering with Labs/VN I didn't have these feelings - just the usual dizziness, slightly off balance and anxiety etc. These feelings for me, came much later and this is the reason why I don't work now. They are so, so scary and I have never gotten used to them. When I am having a relapse I get those feelings every five minutes or so and I really cannot walk unaided and this is why it takes me months to get over them resulting in too much time off work. At the moment they are not happening too often but I did have an episode yesterday for about ten minutes. I do hope that you are not going to go down the same road as me, you don't deserve that - no-one does. However, guess what? I went to town on Monday with no stugeron!!!!! My daughter had her singing exam and then we went shopping for a while. After that we went for a chinese buffet and the place was heaving and red hot - not good for me - but I was absolutely fine! Shirley - well done with the interview and good luck with that - do you get a lot of calls? Take care Sandie xx |
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Just to update everyone, I had my ENT appointment yesterday, and it pretty much went as expected - He tested my hearing, balance, eye movement and focus, and after hearing my story of the last five months basically told me what I'd diagnosed myself. He didn't mention the "L" word, but said it sounded as though damage to the inner ear had thrown me out of whack and that time and keeping busy will slowly allow me to adapt to the new situation. He told me to Google some VRT exercises, and said he'd refer me for an MRI scan if I wanted, but he admitted that it was only for my own reassurance and that he was almost certain (he actually said "certain", then corrected himself) that it will show nothing. All in all, he was a really nice guy who felt knowledgeable about all things inner ear related from the questions he asked and was as thorough as I could have asked for, and if nothing else it's confirmed what I already pretty much knew, that none of my symptoms are abnormal for what I've experienced, and neither is the time it's taking to recover particularly. To be honest, this week has been a reasonably good one, and following on from a similarly okay time the week before this is probably the "best" period I've had so far. I'm sure there are plenty more twists and turns ahead but right now I feel more confident that I'm actually headed in the right direction. |
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Brett - great to hear from you. I have thought of you often because I know you were suffering badly last summer but then you disappeared and i thought you must have recovered! at least you have an idea what is wrong now but it sounds a bit scary having surgery. I do hope it all goes well and you get cured. Andy glad you are seeing an improvement. Sounds like you had a positive ENT experience which must be rare but it is reassuring to see someone who knows what they're talking about i guess. Gloria I know you have mentioned you get tinnitus and i wondered if you ever had this pre labs or did it start with this? Also what kind of noises is it? I have mentioned before that i have lots of clicking sounds but i also get this pulsing feeling in my left ear usually when i talk on the phone and i have done a bit of research and i am sure it is something called tensor tympani syndrome which is where the muscles in the middle ear contract against the ear drum which causes the thumping pulsing sounds. It is linked to something called hyperacusis which is basically an intolerance to certain sounds and noises. I have read that occasionally this can be caused by a vestibular disorder whereby the brain is processing sounds incorrectly as movement. It does sound like what i have... wondered if anyone else has this type of thing? My neck is really aching right now and getting some tingling in my left arm and hand which i think is all due to the muscles and nerves in my neck. Hope everyone else is doing ok? xx |
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Hi all, It's been a couple of days since I posted. My kids are running me ragged with their sports schedules. My daughter plays lacrosse, softball and travel soccer and my son plays travel lacrosse. Oh the joys of spring and motherhood! I have another one tablets = pills LOL Gloria, I say route like root, but depending where in the states you live, some say rowt. Funny huh? Just like in England there are many different accents for the same language. I have been feeling better. A little bit swirly headed at times. I have noticed that it hits me when I bend down to pick something up or to put away the dishes in the dishwasher or when I am folding laundry. I think the up and down of the motion just tweaks it a bit and I feel that swirly feeling. Also when it rains. The neck is a central problem for this condition. That is how my labs began. I pulled a muscle in my neck and have never been the same. God it is almost one year ago! Jemma, the diuretic has no side effects, except you pee more! LOL Gotta go and put my daughter to bed. Welcome newbies! Melissa |
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Brett, good luck with the surgery. It's great that you found some competent doctors. What area of the country do you live in? It would also be great if you woke-up from the surgery feeling perfect, but I would not get my hopes up for that - remember-they are operating in there, causing some trauma. You have to heal from the surgery and your body has to adjust. Make sure your family and friends understand this. I re-read your past posts and see this was a problem before. Make them read a few pages of this site if they still don't get it. You are so young to have to deal with all of this, but hopefully that youth will get you a speedy recovery after the surgery. Be patient, though. Do they intend to do anything about that massive amount of fluid? Don't let that be forgotten about! I would think that could be causing pressure on your inner ear as well. Maybe that will also clear up with the surgery. Be sure they re-check that. Also did they say if your hearing might improve? Seems maybe it could once the middle ear isn,t blocked by the evil thing any more. I felt so bad for you the first time I read your posts-about a month ago-and wondered what was happening with you. Now I feel so happy for you because you are on your way to recovery! Please do not disappear again. Let everyone know how you are doing. That means as soon as possible after the surgery, too! Get better soon! Jodi(jt) |
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Hi Jessica - so glad to hear that you are feeling good most of the time. That feeling you got when you were in the card shop is typical of people with vestibular problems. It's just because your brain can't make sense of all the different colours, shapes etc. I still have problems now with this - not all the time - it just hits when it fancies!! That test you had, I have read about that but was never offered it. I did have a couple of basic tests but rotary table and that were not given even though I know the ENT I visit has these facilities. You would think with me having ongoing problems I would have had all of the tests wouldn't you? The other test you hadsounds crazy and I have never come across that - could a normal person do that I ask myself - lol! Hey Andy - how lazy is that? Google your own VRT - amazing! Wouldn't you think they would have standard exercises you could do already there to give out? Oh well, at least he did reassure you and he is right in that this basically has to run it's course. Brett - good luck with the surgery. Even if it doesn't get rid of the dizziness for you, you can start to address the problem of the fluid in your mastoid area. Jemma I suffered terribly from thumping noises in my ears for a long time. It used to hit especially at night and was so bad I would go and tell my son to turn his stereo down but he would be sound asleep in bed! I also have tinnitis but it doesn't bother me at all. It can be terrible for some people. Mine is like a low level high pitched sound. Every now and again it does get loud for a minute or so and that is not nice. In the early stages of this condition I was VERY noise sensitive and loud noises would knock me for six - even someone with a loud voice would make me dizzier and knock my whole body off. Even now, sometimes I can have music blaring and others I cannot stand it! Melissa - if you ever came to where I live you would not understand us. I am from the North East of England and we are known as Geordies, e.g. ganning doon the toon - going into town aadivvenwannee - I don't want to nowt - nothing stottinheed - headache snottysneck - common cold wi aye - yes hoose -house palatick - drunk Cheryl Cole - do you know her - she's a Geordie lass, but she's posh - lol! Anyway, everyone keep fighting! Sandie xx |
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hey everyone thank you for the responds and for the people that remember me lol jt i live near buffalo ny....i think the reason i stopped posting here was bc i wanted to not ever hear this lab word again and just wanted to push on with my life and do what a kid does and not lay around and complain just tryed to suck it up and live my life but it hasnt worked out as well lol bc im still always dizzy and all the werid non sence but im still confused if this surgery will help or not but im doing it bc i feel like it could help and if theres a cyst pressing on nerves i deff wanna get it out obv..haha butother than that i just try to have fun and ignore this disease for the most part and just try to live like everyone else i was in pity for along time but after 7 months i know i wont be like this forever and things can be worse being without a ankle and not being able to walk at all is pretty damn rough lol but everyone should just keep there heads up and deff remember that this is terrible but some people have way worse than us i think i just took life for granted but i have learned alot glad to see everyone ill keep in touch after surgery kinda nervous about anthesia they give u or w/e it is they put u to sleep with ahh never had a real surgery but will let everyone know if my problems get better!! |
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Hi All, It's been a while since I last posted. Mainly because my computer was broken but also because I was feeling much better! The anxiety died down, as well as the dizziness. Since felt like I was looking through a weird lens, like the world wasn't real as well as depressed. Unfortunately, last night, the strong feeling came back out of nowhere. The pulling feeling, numbness and extreme anxiety. I also felt pretty disconnected and woozy today especially in the car (when I'm driving I always feel like its a videogame or something). I'm exhausted, probably because I slept so poorly (I kept dreaming I was on a small boat on stormy seas (: ) It's been only a month or so since I first started having problems so I'm trying to stay positive, knowing that it could be quite a while longer before I'm feeling normal. I'm having a hard time with the disconnected feeling as it feels like I'm not even living my own life. Since no one elae seems to be having problems with uveitis, its probably unrelated. This has been my primary worry since I've lost some vision and the presure in my eye has increased because of the steroids. Heopfully, that will clear up with time. Like I said, I'm trying to stay positive. Hope everyone else is feeling better! |
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Hi All. Well Sandie that brought back memories i used to live in Alnmouth and although i moved when my dad died i was 10 ( 30 years ago) afew of those words still creep in..especislly nowt and wi aye!!! I am still feeling ok..although my nose is still blocked and i am finding my tongue coated now...never stops does it!!! ears clicking too. i too have tinnitus but dont notice it much unless i am stressed its like a shell to my ear and i can hear the sea. Hope everyone has good weekend i will post longer tomorrow.. Penny |
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Hi Penny, Alnmouth? It is one of my favourite places - it is so pretty there. I'm from Newcastle and we often end up on the beach at Alnmouth! Where are you located now? What do you mean by your tongue being coated? Sandie x |
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Hi everyone, Just to say won't be around for a week - finally off for a weeks holiday (vacation!) to what sounds like a wet and cold Cornwall. Still having major head and neck stiffness and sore sensitivity at the base of my head and brain stem and extremely floaty is all I can describe my dizziness - horrible. Feels so weird. Still as Brett says - it all could be a lot worse, but being totally selfish - would love to be going away and feel 100% and totally normal. Good to read all your posts and lovely to hear from people who posted before. Brett - I remember Buffalo well - on a visit to my brother-in-law and family in Manhattan - decided to go to Niagara for a day trip. Flew to Buffalo and had to hang a round for a while to pick up the bus for the onwards journey to Niagara. Didn't expect Niagara to be so built up - thought it was out in the countryside. - again it was cold, wet and windy (that sort of weather seems to follow me aroundLOL!!). It was a great but exhausting day. Anyway - hope all goes well for your operation - will think of you. Love to all my other Sharp Blue Crew friends. Will catch up when we get back after Easter - Happy Easter to you all. Love & Hugs, Gloria xxx |
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Gloria - hope you have a lovely break, you sure do deserve it. Hope you get some sunshine! Sandie xx |
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Hi all, This is the first time I've had a moment to actually sit down and catch up. It's 11:51pm here! Gloria, have a wonderful trip!!! Enjoy everything about it, even if you are dizzy! Sandie, I am laughing so hard right now. Thanks for the chuckle. I couldn't even pronounce most of those words. Too funny! Oh and who is Cheryl Cole? Brett, I think that once you have the surgery you will feel much better. I don't know if it will be an instant relief or not. Just have faith. I have been feeling quite well. Just a few swirly head moments, but they come and go very fast. We took the kids to the Metropolitan Museum of Art today in NYC. I loved it! My daughter is 7 and didn't enjoy walking all over. My son really liked it though. In the museum I had a feeling like a lot of pressure in my head and a headache with swirlies. It was brief and hit in certain areas of the museum. Sometimes I just want to be me. The old me. The one who never had to check herself everywhere I go. Do I feel it? Don't I feel it? You all know what I mean. Ok going to sleep now. 13 more days until I fly to sunny Captiva Island!! Melissa XXOOXXOO :) |
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Hi all Hope you have a wonderful holiday Gloria. I know exactly what you mean now about the stiff neck. Mine is just agony. So stiff and sore and aching like crazy! I have tried massaging the occipital part at the back of the skull and I can feel how tight it is because after it feels a lot freer but I feel a bit more woozy in the head. It is obviously all to do with compensating that we get this neck pain. I am very drowsy today and just want to rest. Has anyone been to the balance centre in Queens Sqaure in London. I have heard it is meant to be the best in the county and there is someone called Dr Pavlou who gives great VRT programmes there... Take care all Jemma xx |
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Hi Melissa Cheryl Cole is our country's 'sweetheart' and she is from an area a few miles from me. She is married to one of our top footballers but he's been playing around and they are separated at the moment! She's very beautiful and has a lovely Geordie lilt but she doesn't use the words I have quoted - lol! She is supposedly about to break into America - she has been a judge on our X Factor and is in talks to be a judge on the American version. I know exactly what you mean about checking yourself all the time and I understand the feelings you had in the museum but glad that you enjoyed it. Kids are funny aren't they - they hate walking places! I have to prise my daughter out of her room to go for a walk sometimes - she's 13! Anyway, I have this area in my kitchen where I have two wall cupboards joining at a corner and I have my bread bin and toaster under there on the bench and I ALWAYS feel weird when I am messing about there. I think it may be the 'closing in' feeling. Take care Sandie xx |
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Brett- I live in niagara falls! What city/town are you in? You sound so much better-your mood- which is great for going into surgery. Don't worry about the surgery- I've had five, worried each time. and woke-up again. What hospital is it being done at? Who are your doctors? Iam seeing Dr. Gonzales-Doldan. See him tomorrow and see what he says about tests I did. Think he's going to blame my sinuses, which it isn't. Again, good luck tomorrow. -Jodi |
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I thought I'd better write this time so I don't forget it further down the line, but today I've had easily my best day so far, I've felt almost 98%-99% normal since around 10:30 this morning! My eyesight isn't quite "right" but a lot better, but I haven't felt off-balance or had any weird feelings of motion at all really. I think I'm actually more anxious than I have been in a while today because I'm not used to feeling like this! It doesn't help that I have a sore throat and there are a lot of bugs going around, which makes me paranoid that I'll feel a whole lot worse if I've picked something up. Oh well, it's been a strangely normal day at work for the first time in ages! |
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hey jt i live in arcade ny about 30 mins to downtown b lo thats pretty cool we live around eachother how are you doing with your labs? |
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If Jessica were on here, she would be excited to see some more Americans with labs and or vestibular issues. Jodi, JT, Andi, I live in Northern NJ. Melissa |
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Hi Melissa. I'm still here. I wrote a few days ago when I hit 30 days in a row of feeling good! My last post was 25 March. I am very surprised that all the Americans with it seem to live in the tri-state area! |
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Hi all Andy good to hear you are seeing improvement, long may it continue. I tend to find I have one reasonable week in many then it goes worse or another symptom develops. At the moment it is my neck. Gloria I now know exactly what you mean about the neck pain being almost worse than the dizziness. For me it is just agony, I can hardly bear to sit at my desk because it is just making it more painful. It is like a deep tingling burning aching feeling all over my neck and top of my shoulders and it goes up into my skull. My VRT therapist was surprised yesterday that it was so bad and she did a bit of massage on it but i dont know if that is helping. She said if it is a burning feeling then it indicates something to do with the nerves. Painkillers dont even touch it, it is agony!!! Has anyone else had such bad neck problems with this. I did have intermittent pain due to my posture at work but this is something else in the pain scale! Melissa and Sandie - yes I check myself constantly too, always thinking how do i feel, is it worse than before etc etc. It does dominate your life this thing. Brett and Jessica hope you're doing ok and also some of the other folks DC, Gary, Susanne, Amanda? Gloria, hope you're enjoying your hol even if the weather is great. Take care xx |
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Jessica, Yeah!!! 30 days is great!!! I too have been symptom free now for a couple of weeks. After my cold I had that weird feeling of walking on a fun house floor. After I took the antibiotic and diuretic I felt fine. I think I now understand (crossing my fingers) how to deal with the symptoms if they come. I wonder are they forever or for now? Not sure. Like when someone has a bad knee and it flares up in the rain. You're right about the labs people, we are all in the tri-state area! Melissa |
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Thanks, Melissa. I would not go so far as to say symptom-free. I know I'm not 100% myself yet, but I'm 98% most days. The brain fog lifted and work has been so much easier as I don't feel permanently drunk anymore! My anxiety is very low too. I feel optimistic that I'm going to be fine. I too wonder about the chance of it flaring up occasionally or even coming back again some day full-force, but I think anyone who has suffered a long term, debilitating illness would feel the same way. All we can do is live each 'good' day in the present and not worry about possible future illness as best we can. That being said, I still wake up every day and the first thing I do is check for symptoms :) |
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Hi all, I haven't commented it ages. It's been quite up and down with me. When I say down it is not nearly as bad as the first half of the year. This labs thing is coming up to a year now and I was having a bit of a pity party. I don't think any of us would of thought how long it lasts. I finally got my ENG balance test done this week! It only took four months to get in!!! The guy doing my tests was very good in explaining every procedure before doing it. When he blew the warm and then cold air in my ears I sure started spinning. I also had these fancy goggles on that were connected to a computer that measured my eye movements. Now he needs to assess all the information and send to the specialist. If they tell me there is nothing wrong I'm going to flip. I believe the thing I struggle most with is fatigue, muscle weakness and lightheadedness and occasional nausea. I so badly want to do so many more things and my flowerbeds are crying out for attention. When I do try and tackle them, I pay for it later and need to spend more time laying down. I'm still doing yoga mild yoga stretches which really feel good especially for my back and neck. I've been trying to rate my days so today would be about a 60% and my good days are about 70% and the occasional 80%. So one day at a time. Susanne |
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Susanne, Good to hear from you again. Keep doing everything you love to do. Just try to do a little gardening each day. You still need to feel normal and do the things you enjoy the most. Even if later in the day you have to rest. How long have you had labs? I'm going on one year the last week in May. I really feel 100% normal most of the time. I now know what triggers a flare up and I try hard to avoid salty foods and colds! LOL Jessica, you may experience a symptom here or there if you get sick. It won't last long and you will bounce back fast. I'm in the process of taking down a wallpaper border in my bedroom. Talk about vestibular rehab! I'm on a ladder and scrapping away all day. I feel fine though. Not at all dizzy or swirly! We leave for Captiva Island in 10 days. I pray to God that the plane ride doesn't throw me off again. I now notice that just driving up a mountain and my ears feel the pressure right away. Keep the faith! Melissa |
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Hi Susanne You better get ready to flip - because sure as hell they will tell you that there is nothing wrong!! I had the goggle test and a few other tests and they were all fine. Trouble is that all of the tests for inner ear are inconclusive and the doctors basically go by symptoms. Laughing about your flower beds - I don't know where you are but here in the north east of england it's freezing cold and I have just been out into the garden and potted up 84 little bedding plants. Brrr! I now have over 100 little pots on my dining room table because I am scared to put them in my cold frame in case I loose them all to this cold weather! Melissa - do your ears pop when you go up that mountain? One of the problems I have had over the last five years is that my ears very rarely pop. Even in the highlands of Scotland when everyone is moaning that their ears have popped, mine don't. I do that thing where you hold your nose and force air into your ears every morning and even though they don't pop I can tell when they are totally blocked and know then whether I am in for a bad day with the dizzies/balance. Jemma I am so sorry that you have so much trouble with your neck. I must say that I have never had trouble with my neck but for the last year or so have had trouble with my right shoulder and it is actually a lot worse at the moment but I don't think it's connected to my other problems. So, here's wishing you all a happy easter weekend - have just looked at the weather forecast and it is absolute rubbish - oh well, my sister and her family are home for a week!! Take care Sandie xx Well, everyone |
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Well, all in all this week has been a pretty decent one for me - Today I've again felt about 95% most of the time, and yesterday was good apart from a couple of worse spells, while Tuesday was the worst day of the week for me. I'm actually somewhat looking forward to the Easter break now!! The only fly in the ointment is that after very much getting the impression that an MRI scan was "just for my reassurance" at my appointment last week, this afternoon his secretary phoned about booking me in for it, and told me the specialist asked her to call to talk to me as it's really important that I get it done on account of my one-sided hearing loss. To be honest I don't want the stress or hassle of any more tests or doctors right now, but this whole thing has got me thinking "what if it's something terrible?" again, which I could have done without. I'm really not sure what to do about having this scan or not now... |
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Hi all, I have been reading through all your posts and found it so interesting and reassuring. I have had ongoing dizziness for 3 months now, It started immediately after the birth of my daughter in January. I had a very traumatic birth as I haemorraged after and lost 2 litres of blood, then waited three hours for a transfusion. Throughout this time I was completely petrified thinking I was going to die and watching medics faces incessantly for clues. At one point they brought my daughter in to see me ( as I was in theatre being sewn up after a third degree tear ) and told me my Mum and Dad had turned up, then I thought I was definintly a gonna, like they were coming to say goodbye. Anyway, after this I was extremely anaemic and was put onto iron tablets. I had noticed this awful dizziness and had a panic attack at home thinking I was dying, we called an ambulance and was taken to hospital, where they tested my blood and said my iron levels were fine. So why was I still dizzy. I visited my GP many times coming out with different travel sickness remedies that seemed to do nothing other than make me drowsy. He said he thought my balance organs had been shocked after the delivery. I would go back many times and come away with different blood tests that showed nothing, ecg that came back normal and still no answers. I then had 5 days of normality, bliss! then it came back exactly as it was? the 5 days just so happened to be my first period sinced the birth. I went back to gp and finally got a referal to ENT. The ENT Consultant was basically appauling, after a hearing test and some random balance exercises he laughed off my symptoms saying "don't move your head then" when I explained certain head movements send the dizziness worse. He sent us away saying its just probably anaemia even though I tiold him when I was last tested my irons were up to 14! Back to the Doctors we went the next day who said he would refer me to a Neurologist urgently. Well waited 2 weeks still with no appointment then my Husband said enough is enough and has booked me to see a private neourologist at a cost of £250 at BMI. We have a two year old and a 3 month old to look after and I am finding it so difficult. I have had a three panic attacks as I am so worried there is something sinister happening. I have now been prescribed tranlquilisers which I have not taken yet. I have the dizziness, and incredibily tight neck muscles from behind my ears down to my shoulders. I have had some cracking and feelings of pressure in both ears for around a month now. I so want to be given the scans to check its nothing sinister, as I never had a cold preceeding this illness to bring it on? Its been very comforting reading your posts, I am really glad to have found this website after months of scouring the net for answers. |
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Hi Andy, I would recommend that you get this scan done as you are now obviously worried as to why it has been recommended by your consultant. Try not to worry too much about it though - loss of hearing is typical with Labyrinthitis, but they often do an MRI just to rule out any other thing that might be wrong. Have you heard of an acoustic neuroma? This is a tumour (usually benign) that does affect the hearing and I would think they will be looking for that also. Overall your symptoms point to Labs Andy so get the scan done and then put it behind you and get on with getting better!! Hello to you Karen and sorry to hear your story. It must be so awful for you with two little ones to look after. Labs doesn't always start after a cold or upper respiratory tract infection. Mine did, but many people report that they haven't had anything like that. I have had problems for five years with balance/dizziness etc and mine has gone on much longer than most. I also have an underlying problem with iron. My iron levels are perfect but it is my ferritin that is at fault. Have you heard of that or had a test done? If you do a little research you will find that normal levels of ferritin are 12/150 for a woman. There is a lot of contradiction about the huge range between these numbers and some doctors are calling for higher levels to be 'normal'. Below 79 (I think it is) ladies start to suffer from hair loss as the hair lost is not renewed so surely the lower 'normal' level should be higher than 79? Anyway there are lots of symptoms as the body basically is not functioning properly. Mine was at 10. It has taken me nearly two years to get up to 54 and I am taking 420mg ferrous fumerate per day (that's a lot). Have a look at www.healthboards.com and look at the anaemia board. Because of your blood loss after the birth of your baby it can't do any harm to get your ferritin back to normal if it is too low. Hope that helps. Take care Sandie xx
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Susanne great to hear from you. You have been suffering with this for a similar time to me I think. My mine problem is still the balance and dizziness feelings but the fatigue is also quite bad at times. I have been doing the VRT exercises religiously these last few weeks and my neck has been very painful, it does seem to have had some effect on the crunching sounds in my ears which maybe suggests that the noises are the muscles inside my ears. Andy I would get the scan done just to put your mind at rest otherwise you will always be wondering what it may have shown. Great you are feeling more normal again though!! Karen I would second what Sandie says, she always gives great advice. I wondered if you were taking any medications just prior to getting dizzy. I am convinced that certain meds can cause labs or vestibular damage. If you have ear symptoms which you never had before and also feel dizzy then i dont see what else it can be but an inner ear problem. I had all the tests and they really show anything so in the end the neurologist diagnosed a vestibular disorder by process of elimitation. Also if your symptoms are not actually going worse then again it is likely it is an ear thing. Keep pushing for the inner ear tests and ask to be referred for VRT. Take care everyone and HAPPY EASTER!!! Jemma xx |
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Hi all, Sandie, Thankyou for your advice and suggestion. This is not something that had occured to me at all so I will mention it to my Doctor and ask to be tested. I am taking supplements, floradix and spatone regularly so hopefully my iron stores are coming up if they are low. I was on ferrous sulphate for a week after delivery but they said my irons rose so quick I should come off them. Jemma, thankyou for youe advice, I am scared that some of the anti biotics they gave me may have damaged my inner ear, but I looked them up and they are not said to be in the group that damages them, so unsure? I am thinking it must be an inner ear thing now, I am hoping the neurologist will have some answers, meanwhile I am doing some daily excercises at home to try to start compensation. They make me more dizzy but I think that is the idea? I just look back on everything as a before and after, for example if someone reminds me of an event I will think that was before I was dizzy, wow that must have been great, why wasn't I jumping for joy? its so true you take things for granted. Will never do that again if this ever goes away!!!! Thank you so much for your replies.x |
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Karen - the VRT is designed to make you feel more dizzy so keep going with them. Don't dwell too much on how your life is now - you will get better. I am still controlled by it to a large degree but can do most things now. Positive thinking is the way to go! It's like a waiting game! HAPPY EASTER everyone - still a bit cold in the north east but it was forecast rain all weekend and that hasn't happened! Sandie xx |
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Karen, welcome to the site. When I had my first child almost 11 years ago, I had a similiar thing happen to me with the dizziness and iron levels. During my pregnancy, the doctors discovered that I was anemic and put me on an iron supplement. After I gave birth to my son, I was so dizzy for about 7 months. I even went to the doctor for bloodwork. Everything was fine. During these six months I still was taking the iron supplements. As soon as I stopped taking them, the lightheaded, dizzy feelings went away. I also think that hormones can cause a great deal of dizziness. Since you just had a baby, it is very likely that your hormone levels are not back to normal yet. You may want to talk to your gynocologist about it. Andy, get the MRI done! It will make you feel so much better to know that nothing is terribly wrong with you. Try not to be nervous about it either. Sandie, Jemma, Gloria (hope you're having fun on your holiday) I hope that you are feeling well this weekend. Have a Happy Easter everyone!!!! :) :) :) :) Melissa |
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Hey all havent posted in a few weeks well im at 4 months,3 weeks. Ive been quite frustrated with this thing lately i honestly feel great with the exception of the 'movement sensations' while still 24/7. Ive been working as hard as i did before the first day of this illness and making good progress at gym. Honestly though if the swaying goes ill be 100% cause i no longer experience full ear sensations, muffled hearing or brain fog that's all gone my mind feels crystal clear so does my affected ear funnily enough i just wish this pendulum / swaying sensation would disappear that has been with me since day one as it affects my balance and my happiness. I'm just praying ill wake up one day and the swaying sensation is gone :) Anyways I'm seeing the top specialist Balance Neurologist in Sydney, NSW next week after waiting 3 months so im looking forward to getting some closure from the medical community as to what happened to me as they subjected me to every test in the book sigh |
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Hi all, Back from our holiday in what I can only describe as a wet, wind-tunnel!! The place we stayed was lovely - I'll try & post a thumbnail of the apartment we had. The view out of the large picture window was wonderful straight over the bay and lovely sandy beach. However, despite the weather, we had a good time. It was good to relax and spend time with my hubby. As he is self-employed, he usually works across 7 days - so time together is good. For me, it was great that I was in a different surroundings which took my mind of this whole nightmare that we are all experiencing. Jemma/Karen (by the way, welcome Karen and sorry to hear of your situation). Whilst not the thing to say, but it has comforted me to know that there are others who have the same tight, painful neck and shoulder thing going on. Karen - when you describe the tight muscles from behind your ears down to your shoulders is EXACTLY what I have. Jemma - like me, my physio was surprised at how badly my neck/shoulder muscles were. She also did some massage etc. It helped, but was short lived. Basically, my neurologist has said that it is the effect of the damaged nerve on the responses between nerve and muscle reaction. Hence why he has put me on all sorts of different medication to 'break the cycle' of the brain getting the wrong signals from the nerves and muscles. All very complicated - I just wished it would all resolve itself. The latest meds he has given me haven't really worked. I still feel the tightness and pain and stiffness. So, when I see him in a weeks time I am going to ask him for some Prozac (Zoloft) meds as I so need my mood lifting - I am so down and depressed with this now. I know it is an easy way out, but I've tried the strong-willed, fight this myself attitude. Suzanne - how lovely to hear from you. Have thought of you a lot as you experience problems with your muscles too. The dizzy, light headiness is bad enough without any 'extras'! How are the preparations going for you son's (?) wedding? It is this year isn't it? I have my god-daughters in October. I remember her saying last year when all of this was really bad - she said that she hoped everything will be OK for her wedding this year! Well, I certainly hope by then I can feel normal. Andy - good to hear that you are having good spells - great. Do get the MRI done. The reason it seems weird that you are contacted so quickly to arrange things is because you are paying privately for treatment. This was the same experience I had. My MRI was organised in a matter of days. We are so used to having to wait on the NHS for appointments. Just goes to show the power of money?!! Not that I have millions stashed away (oh, that would be nice), but when you are so scared by what is happening to you, any savings you have has to be used. My savings are just about nearing the end after all the treatment I have paid for - still, at least I have peace of mind if not resolution. Melissa - you must be so excited about your hols (vacation). Captiva Island - are you captive LOL!!!? Sounds hot and sunny - just what we would love here in the UK. Have the best time and let us know how you get on with flying. Hope not too many chocolate eggs have been eaten!!! Jemma/Karen - let me know how your necks are doing - am intrigued we all have this and any magical cures! Again Easter wishes to you all. Love, Gloria xx |
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Gloria, welcome back!! I do hope that you at least rested a bit. Thanks for the well wishes for my vacation (holiday)! This time next week I will be on the beach with a pina colada!! LOL I have been symptom free now for weeks. I feel great. Every once in a while, like in a store or the movie theater I get a slight off feeling. It comes and goes very quickly. Almost like my brain is adjusting to it's surroundings. Gloria, I take 100mgs of Zoloft everyday. Without it, I'm sure that this beast of a condition would have killed me. At least emotionally killed me! Make sure that you do not take the generic for whatever medicine you decide to take. Get the real stuff. The generics have side effects. I have had no side effects at all. Now when I have symptoms, I just don't panic about it. Good luck!! Melissa |
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Hi Gloria great to have you back and hope your holiday was a nice a break. It sounds as though you are feeling a bit down though, is that because of your ongoing symptoms do you think? I know just how you feel although i have had a reasonable Easter taking all things into account. Been out for a few local meals with my boyfriend and coped ok. The usual off balance feelings but nothing too horrendous. My neck is still painful, not as bad as last week because i have not been at work over easter. Gloria my VRT therapist used that exact phrase about 'breaking the cycle' that your neurologist used. I think its in reference to the muscles being affected by the nerve damage and then you dont compensate properly because you stop moving like you used to. I have ordered a wobble board to help with VRT as i really want to challenge myself. Gloria are you seeing a private neurologist or are you under any NHS doctors? Melissa hope you have a wonderful holiday. S - i hope you get on ok with the balance specialist and they give you an answer. Jemma xx |
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Well, after last week went so well, I've been hit pretty hard by symptoms over the past few days which put paid to my idea of a relaxing bank holiday weekend. I've now completed my fifth month of this "sentence", and after hoping I'd turned the corner last week I'm now feeling really fed-up again. I feel far more off-balance, my ear feels full almost all the time, and my tinnitus is worse... Talk about frustrating! As for my MRI, I'll be having it on the NHS rather than privately so I guess it'll be a long way off - What bugged me was the way my consultant's secretary made it clear that she'd been told by him how urgent it was considering my symptoms, when the impression I'd got from him was anything but! |
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Jemma/Melissa - great to hear from you. Even though I had a good time - because I still got the swirly head and everything else with my neck & muscles etc - I missed not being able to vent here and know everyone understands. I felt I had to say nothing - keep smiling - stiff upper lip and all that (what we Brits are supposed to be good at!!) because I didn't want to spoil my hubby's holiday as well with my incessant ranting about this thing!! So pleased you have had a good break Jemma. I've meant to ask - what VRT exercises are you doing and have you decided to get a wobble board of your own back or was it something the VRT therapist advised you to do? Also, where have you ordered yours from? Maybe something else I can add to my collection of VRT equipment!! I am still seeing a private neurologist - breaking the bank like you wouldn't believe! I only see him every 4-6 weeks, so its not like it is weekly. I am seeing my VRT therapist though next week and think I have to stop because I can see there is no more she can do really. I think, now, that it is down to challenging exercise etc and time. I cannot see the point of spending £85 to see her every time and come away with not much anymore. The neurologist i will keep with for a bit as although he comes across as very 'high and mighty', (so intimidates me) he does know his stuff - so I see him next week as well. Sandie - thinking of you too. How are you now? Have you recovered back from your blip recently? The weather has improved down here (of course, since I returned from holiday - typical) - so the front door is about to be painted - way hey!! Karen/ Andy and all - how are you doing? Speak soon. Love, Gloria xx |
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Hi Gloria Glad you had a nice break even if you still feel yukky - at least you did it! I'm not too bad at the moment. Definitely having these 'blips' at that time of the month even though I am not getting an actual period. Isn't it so sad that all you ever wish for is not to have periods and then when you don't have them you are wishing they were there just to relieve these horrible symptoms? My sister has been visiting over the easter (from Mersea Island), and the first day I saw her I was fine. The next time I saw her I was really quite dizzy and off balance so I took two stugeron (what the hell!) and I was fine by the time we met! I'm seeing her later this afternoon (she is staying with her husband's family in Durham), and then she is off back down south tomorrow. The weather has been so horrible while she has been here. I now have two hundred little bedding plants potted up on my dining room table - it's too cold to put them in the cold frame just yet! Still wishing for some warmth!! Take care Sandie xx |
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Hey all, havent written for some time as I have had a good spell and didn't want to jink it by writing it down. However since Sunday I have been having the old dizzies back again. Andy H - we are at the same stage, I am 5 months with this and starting my 6th month. It's strange that you were seeing good weeks the same time I was and now we are both back to the dizzies. I hate this thing, you just don't know where you stand with it and can't make plans. I drove on Friday, did about 8 miles I think to the supermarket. I'm still not good at doing this, after a while I get quite dizzy. I reversed into a parking space and that was my lot, had to sit there for a couple of minutes to recover. I was not too bad in the supermarket, I do feel my visual is getting better, definately not so much jumping about. I find I am ok at the local shops, but the business of a supermarket can still make me disorientated. I really wish I was like most of you on here and can drive, I am alright as a passenger, I think it's the concentrating that is doing it. It's the same as when I had my cousin around and I was trying to concentrate on him, same dizzy feeling. It's a lovely day here, managed to get my washing out, all the VRT bending down picking up the washing and then stretching to get it on the line must be good, surely LOL. Have a good day everyone Shirley x |
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Shirley, I agree, not being able to make plans is the worst thing for me right now - I've been invited to a number of events in London over the next couple of months, but right now I can't commit to any of them as I really don't know how I'll feel, let alone whether I'd be able to cope with a packed capital city! I suppose I haven't felt so terrible today aside from being more off-balance than usual (and tired and headache-y as a result, no doubt), but it's hard to get a real grip on where you are with your recovery when things change so frequently and so rapidly! That normal day last week when I enjoyed everything in my life for the first time in months seems so far away already... |
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Hi everyone Gloria - gosh you must be spending a fortune on your medical bills. Could you get referred for VRT on the NHS so you dont have to keep paying privately? That said, my therapist said the dizzy people she has treated usually see improvement after 3 or 4 sessions so I am wondering if she is going to discharge me after a couple more sessions. I still believe that even with all the VRT in the world this thing will still takes its own time. I think you are right, there are only so many exercises they can give you. Mine are basically the Cawthorne Cooksey exercises with a few other head turns and basic bending, stretching which I am sure you have done many times over. I am hoping she will give me some new ones next time I see her on 20th April. The wobble board was my idea. I have been using my boyfriend's old surf board balancing on his boxing pads as a makeshift balance board since xmas and at first it made me feel really woozy but now im used to it so I want to get a more difficult proper balance board to test myself. The one I have ordered is from an online site called Sport 1912.com and it was about £26 with postage. It can be adjusted to make it more difficult so I will let you know how it is when it arrives. Shirley sorry you are having problems with driving. For me that it is one of the best things. That seems to puzzle the doctors but I have heard so many people say the same thing. There are those however who find it hard to drive with this, maybe it depends which part of the ear is damaged. Like you I find it really hard to concentrate on people and find I am really tired and drowsy if I have to speak to someone for any length of time. How is your tarot reading job going? Andy that is one of the frustrating things about this condition, it twists and turns and you never know what is coming next. There are so many weird symptoms and you can change so quickly and like you said you just dont want to commit to anything because you just dont know how you will feel. I range from mildly off balance and coping to really feeling dire within a short space of time. Sandie great to hear from you. Glad you havent had any more setbacks - onwards and upwards!! xx |
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Well did a stupid thing today, came in from the garden and had a wasp on my head, screamed, put my head down to brush it off and wham, dizzy dizzy dizzy. Now cant look up or down without being overcome. Phoned up my physio as part of my VRT exercises are looking up and down and told her it makes me feel spinny, she said leave them for a couple of days and just concentrate on the shaking the head ones. Just when you think it couldn't get any worse !!!! Andy H - the tiredness fatigue is something I struggle with everyday, but last Thursday, woke up with so much energy I spring cleaned the house, felt like my old self it was great. Come Friday, the fatigue was back with a vengence as was the dizzies, oh well I guess I still haven't learnt my limits with this thing. |
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Hi all, Thankyou all for your comments and advice, it has all been really helpful. I have not been too good recently, the dizziness has not changed, its just been getting on top of me, the prospect of what it might be or how long it might last is very scary at the moment. I am finding it difficult to function with looking after the children etc and my darling Husband is doing everything, I feel terribly guilty about this. Melissa, thanks for your advice, it was very interesting. I am not currently on the ferrous sulphate so not sure, but its definitly something to consider with the hormones. I asked my doctor if these could be symtoms of recovery from a traumatic birth and he said they are unusual symtoms. My sister said she suffered with a kind of dizziness for around a year after traumatic birth, and she is fine now. She said its to do with the anaesthetic from the spinal, but I said about my ear symptoms and she said she had this too, feelings of pressure etc, and the blurred vision. The dizziness does get worse when I am stressed or have been crying but I suppose anything would? I am going to Neurologist on friday so hopefully he will be able to give a diagnosis. Thanks again for your input, and I hope you are all having good days. xxx |
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Shirley, I suppose you have to look on the bright side that you're supposed to do exercises that encourage the dizziness, and it sounds like the wasp incident certainly did that! Luckily these days I find that when I do things that make me feel weird, it doesn't last too long - Normal head movements (including VRT exercises) only make me feel "dizzy" for a split second, and more involved stuff makes me feel weird for maybe an hour or so at most before it settles down. That said, I have to confess that I simply broke down and cried before work this morning - At the end of next week my Mum goes in for hand surgery, and after that point she'll have a couple of months of not being able to use that hand so she'll need me and my Dad to help out as much as possible, and I'm just not sure how much I'll be able to do during that time. It makes me feel really useless and low, and it just really got to me today on top of everything else. |
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I was just wondering if any of you out there had all this start after a visit to the dentist? If so please share. Thanks! |
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Gloria - I'm glad you were able to get away for a short vacation. Even though you didn't feel great, you must feel that you've accomplished something that you wouldn't have been able to do months ago. That is how I often measure my progress. I'm also with you on "putting a smile on my face". Our outside can be a perfect veneer of what's going on inside our bodies. I have been doing the VRT exercises you mentioned a while ago - the heel to toe ones, for about 2 weeks. Not sure if it's making a difference, but it is a challenge and I think it only can help. Now I'm waiting to hear back from the ENT for the results of my test. Funny thing though, ever since my test my ears have been bugging me more with pressure and aching. I guess the air pressure used during the test disturbed it. Jemma - Yes the twist and turns of this labs always catches me off guard. I'll have a half day or so of feeling almost normal which causes me to be more active and then I'll regret it the next day feeling worse. Andy - Crying is definitely allowed. My family has never seen me cry as much as in the past year. Sometimes it is just too overwhelming. On a happier note, my sons wedding plans are going great. The invitations should be going out shortly and I bought my dress. That is a load off my mind. Now I get the fun of accessorizing the outfit. My daughter will love helping me with this. |
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Hi all, Well. what follows a short holiday - an awful sore throat and cold of course! What does that do - make you feel dizzy and yuk again!! Oh for normality. Andy - so so sorry to hear you have felt so low - this thing sure gets to you that way. Like Susanne said - there is no shame in having a good cry - in fact it is probably good to let your emotions go. Me likewise - have cried and cried buckets - still do. I cared for my mum for years (she was quite elderly and infirm though) - although I didn't have labs - but it is a stress even when you feel OK. Even though your mum will not be able to do much for a while - she, and your Dad totally understand your situation I'm sure. I had to give up work and even though feel tons better, I couldn't cope with the change in how I feel every day and work. I feel useless because of this and the fact I am not contributing to all the bills and things. The fact that you go out to work with all this makes you totally amazing and not at all useless. I wish your mum well Andy - hope all goes well. Susanne - good to hear your son's wedding plans are going well. I just hope I feel more 'normal' for my god-daughter's wedding in October. This thing certainly 'pulls the rug from under your feet' and what were a given now makes day to day things uncertain if you know what I mean. Do you get muscle ache all over or do you have this neck and shoulder thing as well Susanne? With me it is that and the head pressure that drives me mad. Well back to my day - let's see what delights today brings! Speak soon, Love, Gloria x |
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Susanne, you sound as though you are improving albeit at the snail's pace we are all going at. The thing is that my biggest fear was that i would never recover and would be stuck the same forever. That scared me so much especially before i had a diagnosis. I always said at least if i feel i am improving even if it is slowly, i can bear it. I hope you get some resolution from the balance tests you had. Let us know what they say wont you... Gloria - oh no a cold!! As you know I had two recently and they made me feel dreadful and then of course you think you are going worse or that more damage will be done to your ears. Hopefully yours won't last too long. The one I had went on for ages and then just as I got rid of it and thought i was feeling better i came down with it again. I am waiting for my hayfever to kick in but the weird thing is that so far it hasnt really botherered me but this time last year when i got labs i was suffering with hayfever and i thought at first that my symptoms were a bad reaction to a hayfever tablet. The night before all this started i took an antihistamine and I have never needed to take one since. All summer i didnt have hayfever and i am interested to see if the same happens this year. How weird is that!!! My neck hasnt been too bad this week which i think is due to my posture. Instead of slumping and slouching at my desk at work I am really trying to sit back on my chair with a straight back, it seems to have helped with the neck pain. Fingers crossed anyway. Gloria do you think that tingling we get in our hands and feet sometimes is actually coming for the nerves in our neck. I know that it is quite common for neck problems or injuries to cause tingling in the limbs. Andy no shame at all in crying. When this started I was crying every day. I am not someone who would normally cry but this illness made me cry at any little thing. I would even break down in public places. I can assure you i would never have done this before. Recently i havent been crying anywhere near as much but this illness does things to you. The vestibular system is very complex barometer of the body's sense of wellbeing. When things go wrong with it your brain gets confused and your body starts pumping out adrenalin, glucose, hormones etc to deal with the problem which leads to anxiety, panic, depression and a whole host of weird symptoms. Then you feel so tired as your brain constantly battles with the confused/asymmetrical signals it is getting from the ears trying to make sense of everything. I think that is why when lots of us try to do things we pay for it afterwards because we have had to use so much extra energy both from the brain and body to do normal things. Has anyone on here heard of Dr Pavlou at Queens Square in London. She is meant to be a really good balance specialist and gives excellent VRT programmes i understand. Gloria this might be more in your neck of the woods being down south. Anyway take care everyone xx |
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Hi Jemma, I had a similar problems you have mentioned. Tingling numbing feeling on hands, neck pain headache, ear problems (tinnitus and tensor tympani syndrome), vertigo, digestion problem etc. But luckily I connected that with a neck injury that I had many years ago, and it turns out that my upper vertebra is out of alignment. After much research I found the Upper Cervical Care who specializes in fixing the C1, C2 issue, I found a doctor here in California USA, his website actually explains this a lot better than I do - http://www.uppercervspine.com/id2.html I strongly urge you and others who have these type of issue, to have your neck checked out by an Upper Cervical Doc. The recovery is slow but I can feel that my body is getting stronger. it's always good to find the root of the problem instead of trying to mask it with things. I hope you can find some answers too.. and also remember God is always in control and He knows exactly what's wrong with the body even when the doctors. Austin |
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Hi all. Just want to echo what Gloria said about those of you who continue to work with this dreadful condition - fair play, it takes some doing and I'm not able for it myself. Gloria, you mentioned an upcoming wedding, I was at my friends wedding last Saturday week, it wasn't too bad - dinner time when everyone moved into the one room which had low ceilings and was poorly lit was the most difficult time. 150 voices in a small room is a lot to process, but it got easier after a while. It's been an eventful few weeks and will be for the next few. I've got another wedding in the middle of May, and a stag do on Saturday night. I've been quite bad this last 6 weeks or more; it seems to get worse during the afternoon and early evening and then ease around this time, although today is bad all day as I started VRT again as my recovery has totally stalled. Over 14 months now, it's hard to keep positive when it keeps dragging on, but persevere we must. I had a college interview Wednesday of last week, some of you might remember that I said I was going to try and go back full time in September. They offered me the position on the course I wanted the very next day. I was delighted with myself, being dizzy at the interview didn't seem to hinder me. Whether or not I'll be able to go in September is another matter, but getting a foot in the door is the main thing. The course can be deferred for a year if necessary, at the minute feeling like this, it's not going to happen. Got my 6 month follow-up MRI scan coming up on Monday, not overly concerned about it, still no headaches, and they are the telltale sign of something worse. That's all from me for now, welcome to the new folks, |
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Hi all, Just uploaded a thumbnail picture of the view from our holiday apartment window - on one of the more sunnier days! It was lovely just to sit, have a cup of coffee and stare out across the bay. The little town opposite us was St. Ives - very pretty. For those not resident here - it is on the tip of the south west of this country in Cornwall. When the weather was not so good and the sea rough - it was just as pleasurable to sit and watch the massive waves come up and crash against the rocks. Gary - how great to hear from you again. You too not having a good time. Maybe it is because you have been busy doing lots and putting yourself in different places and situations? I am maybe thinking this. I know a holiday is supposed to be good, but again, different scenery, doing a lot of walking around every day. I come back home and because the weather is better, have been doing the gardening, post holiday washing and ironing etc etc. Today, maybe it is my cold, but I feel really light headed, nauseous, bad muscle aches and just plain rotten to be honest. You said about starting your VRT again - I've not been doing mine as I felt that with all my activity the basic stuff wouldn't be so necessary. Perhaps I need to go back on it again. What are your symptoms at present Gary and do they change daily? Well done you, for getting accepted into college. You will do it - be positive. I am sure they will be sympathetic to your situation and help you accordingly if you need it come September. I have to be positive, as my god-daughter's wedding is in October. I really can't be feeling like this by then! What is it that you will be studying? Not to become an ENT consultant LOL!!!!! Jemma - haven't heard of her, but Queen Street is near Harley Street - so expensive if seeing her privately!!! I got a phone call today from an NHS hospital in a neighbouring area. My neighbour who is a physio for stroke victims gave me the name of this person she works with. She has knowledge of not only muscular problems but vestibular as well. So I got my doctor to refer me to her - although it wasn't sure it the referral would be accepted as it was out of area. If that was the case then I would have to pay - what's new!!! Anyway, it has been accepted and I see her next Wednesday. So I can't wait to hear what she has to say about this whole muscle/balance thing. Anyway take care all. Gary - good luck for Monday. You won't get the results then will you? Let us know how it all goes - and enjoy your weddings and stag do's!!. The Irish side to my faimily always seem to be at weddings - you get all the fun over there!! Hugs, Gloria xx |
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Just to moan about how rubbish I feel - again! Went into town - feeling really really swirly headed and fell over on the main road. Thankfully, the lights had turned red. It was at that point I just thought I've had enough. My head just doesn't feel as if it belongs to my body at the moment - feel so spaced out. Have started to do my balance VRT and toe to heel thing again to see if I need to go back down that route again. Gary - you mentioned about going back to do your VRT - what exercises do you do and are you still doing your Aikido? Does anything work with this - maybe I need to put up and shut up!! Am supposed to be going to the cinema tonight with a girlfriend of mine and then for a meal. Am making myself do it - it is also the first time I have been to the cinema with labs!!! Going to see Sandra Bullock's film - is it called The Blind Side? Anyone seen it. Hopefully not too noisy! Hope you are all having better days. Hugs, Gloria x |
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Hi everyone. I just wanted to say that I got a diagnosis yesterday, after nearly 5.5 months, and it was not one that I was expecting: vestibular migraine. I'm still trying to process the fact that you can have migraines without headache, but with inner ear symptoms. Apparently you can have chronic dizziness, ear fullness, tinnitus, and all the other symptoms we've been suffering, but from migraines. Apparently migraine runs in families, is predominantly a women's affliction, can flare up during your menstrual cycle, and a host of other things. My otologist and VRT therapist want me to see a headache specialist and begin a course of medication. The options aren't pretty: blood pressure medication, anti-depressants, or anti-seizure meds! I guess, if I have a choice, I'll start with the blood pressure meds and see if that helps. I must admit that I do get frequent low-grade headaches, but nothing I ever considered a migraine. I'm just having a hard time processing that this all might be from a migraine I can't even feel. Anybody else have this diagnosis, or have it proposed to them by their doctor? Jessica |
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Hi Gloria, sorry to hear you're not well. Falling down sounds horrible, I hope you're ok. I've never fallen or come close to it with this, my main symptoms are brain fog and tiredness all the time, permanent tinnitus in my left ear and occasional nausea. Also my memory is shot to bits, it's quite worrying as I've always had a good memory before all this. I'm just doing basic Cawthorne Cooksey stuff, moving my head from side to side and up and down focusing on a point. Not sure it works, but will keep it going for a while. I stopped the aikido because of that problem with my chest that time, but that's cleared up so I might go back to it after getting the results of the MRI scan and having a chat with the neurologist. Going to ask him are there any tests they can do on the brain to see is there anything else causing this, like I said before I'm worried about my memory and ability to comprehend stuff. Kinda need that for college! Going to be studying physics with astrophysics - so it's quite a difficult course. Sure we'll see how things are in August. Hope everyone has a better weekend. Take care, Gary. |
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Gloria - You fell down? Seriously? How scary for you. I think I would have burst into tears. You are one brave woman. The movie "The Blind Side" is a wonderful family feel good movie I think you'll enjoy. You asked about my muscle aches, well I don't have the sore neck thing. Maybe it's because I do stretches and neck and back exercises almost daily. My achiness is just general all over aches, but the worst is in my buttocks. I know, funny huh? I wonder if it is because it is a major muscle group. Oh I don't know! Hope your nasty cold is short lived Gloria. It's just another thing to deal with , right? Jemma - I really like how you described the vestibular system in your previous post. It makes sense. I will also let you know when my results come in from my balance test. Gosh you'd think they'd be able to email the results lickety split in this computer age and contact me for an app't. Well yesterday I had quite a good day with more energy and hardly any vertigo. Then in the evening the symptoms returned along with a few sharp ear pains. Today finds me fatigued and lightheaded again. Will do my heel to toe exercises now. |
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Hi guys, I really do STRONGLY recommend you guys to check out Upper Cervical Care I didn't believe it at first but it does wonder to me and people I know. Just think about if you ever had any trauma or injury to your head or neck area. Even the slightest deviation can wreck havok to your nervous system and produce all these weird symtomps. It doesn't hurt and cannot make it worse for you guys. And medical doctors can never diagnose this, I am sure if you take my advice and try this it might very well change your life. Make sure you find a qualified UC doc. The one I am seeing from the Blair school. Check out this website and this advocate for UC you will find tons of information about it - http://www.upcspine.com/greg3.htm Austin |
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Hi all, I haven't posted in a while. I've so busy painting my bedroom and then throwing my back out. LOL Well, I fly to Florida today. Wish me luck! Crazy, but my car service is here! Melissa |
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Hi Melissa Best of luck with your flight and enjoy your stay in Florida, lovely part of the world, was there 8 years ago for the Winter Music Conference in March. Winter they say, but it was 80 degrees! Will definitely go back someday. Take care Gary. |
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Hi all Gloria sorry about your fall, that must have been awful. Did you hurt yourself? Was it because of the dizziness being so bad? I have heard Dr Pavlou charges £175 for the first session and £125 thereafter which i thought was pretty standard as private fees go (rip off really of course) but i have heard people say she is worth every penny. I think you can get referred to Queens Square on the NHS if you push your GP but obviously it would take a lot longer. I haven't been too bad this last week. I still find shops, busy places, talking to people etc really hard because i feel weird and it increases the off balance feelings. I have found moments at home where i feel more normal and can switch off from it a but but of course i am always aware it is there. Does anyone else find that in shops looking round makes you feel really weird like your brain cant process all the information. I can't spend too long at the shops. Austin i think that website is really interesting and i am sure all the neck and muscle thing feeds into this. I do think i have some alignment problens with my neck but i dont think it was at the route of the inner ear problem. It can't hurt to try different things though. I am not sure we have any centres quite like that one in the UK but i have seen an osteopath for my neck pain. Melissa have a great holiday! Gloria how did you cope with the cinema, I have been a few times with this and found it ok. Some people have terrible problems in the dark with this but i have not found it too bad. Have a nice weekend everyone? Is anyone watching 'Over the Rainbow'? xx
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Hi all, Gary - my memory is just the same. I can't remember a damn thing. Example: today going to the garden centre, five minutes down the road I'm asking myself where am I going. Twice that happened. At home go upstairs for something and forget what it is. When I'm talking I forget the names of things. Never have I been like this. Felt a bit better today although have a bad headache and swirly headed still. Another question, Gary - you say you have brain fog, tinnitus etc, but do you still get swirly headed or dizzy anymore? Physics and astrophysics! Gary - maybe you could be the next Prof Brian Cox. Have you had the TV series Wonders of the Solar System on BBC? Amazing. I would love to be that intelligent to understand all that stuff. Tried to find out the difference between quantum physics and particle physics which this guy seems to understand both!! Was I confused. Take my hat off to you Gary for understanding such incredible things! Totally understand about your memory worries. However, keep positive and you will get there. Susanne - The Blind Side was one beautiful film. What a lovely story and I didn't know it was based on a true story. I have to go and see it again or get the DVD. So inspirational. Hope you are having a better day but for me it is one day at a time and a week at a time. Can't really plan ahead and cannot think too far into the future which upsets me so much. How my and our lives have changed. Pray to God we get relief soon. Jessica - how did they come to diagnosing you with Migraine Associated Vertigo (MAV)? I thought about this but my ENT consultant and Neurologist have said no it isn't even though I do suffer from migraines for many years! My neuro has given me anti-epilepsy drugs because they are also used to dull neuropathic pain which my muscles have been causing. Have had no side effects - have titrated the dose up slowly, but for my condition they haven't stopped the pain. I'm upping the dose again , but am afraid it will give me more dizziness - a major side effect!! If that happens then I stop taking them. Couldn't cope with that. Years ago my GP gave me a beta- blocker for my migraines called Propranolol - made me feel so tired and 'heavy' I could hardly move - so don't try that. Let us know how you get on. Austin - thanks for your post. For me i have been down that route - had MRI scans but all clear. I haven't had any neck injury. My labs came on in one of the usual ways - severe viral infection of my chest then ear infection and wham - labs. Because labs effects all the muscles of the head and neck it can be a close call, but my MRI showed brain signals typical for labs. Onwards and upwards folks!! Take lots of care. Hugs, Gloria xx |
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Hi folks. Gloria, that all sounds familiar, looks like it's just another of the many symptoms of labs, short term memory loss and cognitive difficulties. When I started posting here first back in August, one of the people who used to post (Scottish Katie iirc) said that her memory was the same but it's a temporary thing and it does come back. It's quite embarrassing when you forget what you're talking about mid sentence though! I find I daydream a lot, and can't concentrate on stuff for any more than a few seconds before my mind rambles again. Actually I find driving one of the best things cause it forces you to concentrate on the road ahead. Unless it comes back by September I see no point going back to college as it would make an already difficult course more difficult. Rich, I think I remember you saying once before you did something in astrophysics before, and it's part of the reason you started this board? Is that right? I have been watching that series on BBC Gloria, yes it was very good and Prof. Cox is a great presenter, he explains things very well and got to travel all around the world with his job. Talk about job satisfaction! I know most of the stuff he talked about, but he's much better at explaining things than I am. His enthusiasm for his work is what grips most people, he just gets so into it. Readong on other forums, a lot of people who normally wouldn't watch stuff like this have and the feedback to the show has been good in general. There's going to be a follow up show as well, starting recording in May. He looks so young as well - hard to believe he's 42! Anyway, better do something today - the sun is shining, it's going to be warm, have to drive back down south this afternoon. We got a new dog in the house where I'm renting - a staffordshire bull terrier - she's 3 months old and very active, it's good exercise bringing her out for walks, it'll be the other way round in a few more weeks, she'll be dragging me along :) Enjoy the rest of the weekend, Gary. |
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Oops forgot to answer your question Gloria with all my rambling, yes I do get swirly headed and that fainting feeling that lasts a split second has come back again lately but I've never once fainted or even vomited with this even with the nausea. What I call swirly headed or dizziness is just bad brain fog really, it affects your eyesight when it's really bad and as someone said it's like looking through a goldfish bowl or through someone else's glasses, the world just looks surreal. Most of the time it's manageable. It's hard to believe all this can be caused by a small part of the inner ear. |
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Well, I started Sharp Blue to write about my dad's cancer treatment, but I've mostly written about physics and history. I was a physicist in Cambridge for almost ten years, and I was working on my PhD when my dad became ill and I gave up to be closer to him. In Cambridge, I was working on geometric approaches to the solution of systems of partial differential equations using mathematical structures called "jet bundles". The ultimate aim was to use those approaches to solve the equations of gauge theory gravity, which is locally equivalent to general relativity (or rather to the extension of general relativity with spin-torsion coupling). I'm more interested in fundamental physics than in applied areas like astrophysics though. The articles on physics here at Sharp Blue start with "Maps of Physics". Can it really be more than six years ago that I wrote that? |
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Hi All, Gloria - love your new photo, you look so healthy and alive in it, bet you weren't feeling that way when it was taken :-). Goes to show why people mistakenly think we are ok when we look the picture of health. Swirly headed - I have been feeling like this for the first time this past week. I never really knew what you meant when you said this but now I think I do. I was walking through IKEA (yes never thought I would ever be able to do that again) and I didn't feel the usual dizziness but more swirly headed(a kind of light headed dizziness) which is a definate imporvement from the head movement dizziness. I have really been pushing myself this past week and cut down on the VRT because of it. I shopped on Thursday at the local shops and had dificulty with the narrow isles, and the different shapes and sizes and I also noticed that walking from the outside sunshine into the relatively dull interior of the shop also brought on the dizziness or is it anxiety, I am not sure. Anyone else get this? Friday cleaned the house from top to bottom then had a few family members round and played with the kids in the garden. Even did a bit of running - HA. Yesterday mowed the grass which I found surprisingly ok but when it came to sweeping up, thats when I started to get dizzy. My son took me to put a bet on the Grand National and for the first time ever, I walked out of the shop moving my head as you do from side to side and for a slip second or 2 no dizziness, could hardly believe it YEY - didn't last more than a couple of seconds but its got to be a step in the right direction. Today around IKEA started off feeling a bit overwhelmed but then I think my brain got a bit used to it and as I walked around it did start to get easier. I now have the headache from hell but do feel so happy that I have managed these hurdles the last few days. Onwards and upwards - feeling so positive :-) Hope everyone feels the same. Shirley - or am I now swirly shirley - HA Andy - I completely understand what you mean about crying, I did the same when my son started getting chest pains and we ended up at the hospital. I was only about 10 weeks into this and I just cried and cried because I didn't know how I was going to look after him if something was wrong. Since then I have cried loads of times - I don't think it's anything to be ashamed of - this is just so overwhelming, I don't think it would be normal for any of us not to get emotional. |
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Hi all, Gary - I am in total awe if you understand what Rich has just posted!!! As an aside - Prof Brian Cox was in the band D:ream back in the nineties with a number one hit 'Things can only get better'! Use that as your mantra LOL!! Swirly Shirley - Hi! Thank you for your comments about the photo - you are so right about how we look and feel are two completely different things. I am fed up really with people saying how well I look. I know they are being kind, but lately have felt b****y awful! You sound as if you have come on leaps and bounds Shirley? So so pleased to hear you are feeling so much more positive. The change in surroundings like being in a supermarket or shop to going outside or back in the home all have an effect on me too and I know others have experienced the same. If I am inside at home and start to feel really swirly (lightheaded) or dizzy, then I get outside for a walk as soon as possible. Larger, wider open spaces relax my brain because it is not having to deal with so much in a smaller area. The same with shops (although now that is not a big problem). Weird, too, coming back from our recent week away from the apartment we were in to my house again had an effect. So you're not alone with this. Shirley - how's the job going? Is it working out for you? Jemma - are you OK? DC haven't heard from you in a while - hope things are much improved for you too. Andy H - how are things and was it last week you mum had her operation? Hope all is well. Love & hugs, Gloria xx |
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Hi Gloria, Hope your doing well, yes Im feeling better, have just started to get rid of this lingering fatigue and body aches I was dealing with. Im meditating every morning, Im doing qigong daily and Im eating a vegetarian diet, so far so good, no ore big nights out drinking for me, to heal we have to change our lifestyle long term. In regards to my balance its better then its every been, still get a slight swaying feeling here and there but Im better then I was last year and thats what counts. Everybody keep that positive mental attitude (PMA) DC |
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Hi everyone Gloria - I did post on Saturday and it came on here the next day just above your post. You will see I said just the same thing about the shops, like your brain cant process all the information properly so it makes you feel more weird. Glad I am not the only one who notices that as it confirms it is all part of this thing! I have been feeling a bit more drowsy and woozy these last few days think it might be because it is hayfever season. Just to say with regard to that solar system programme, it is not really my thing as I am hopeless at science but my boyfriend was so inspired by it he went out and bought a telescope! Take care everyone xx |
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In general I'm feeling a bit better now than I did a week ago - On Saturday I went out shopping, and actually didn't really suffer at all while I was doing so, and yesterday I managed to knuckle down and get some things done rather than just sitting there and feeling sorry for myself. I have been feeling less swirly-headed in general too, which has helped with my concentration a little. Apart from that though, it's the other symptoms that have been getting to me the most I think; the world looks as weird (if not weirder) than ever, my neck aches and feels sore or stiff at times, my ear feels full on and off and I've even started noticing tinnitus in my "good" ear from time to time - All stuff which leaves me frustrated on the one hand and downright scared on the other about what's happening to me and if I'll ever get back to normal again. My Mum goes in for surgery this Friday - At the moment I feel calm about it all although how I'll cope as the week progresses I have no idea! Gloria, I'd be interested to hear about your cinema experience too - I've got a chance to go and see a couple of movies back-to-back up in London next month, which would be a huge challenge for me but one I might consider if I think I can make it through the whole thing. |
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Gloria: thanks for replying to my post. To be honest, I'm not sure how my otologist came to that diagnosis of vestibular migraine except that he said that my symptoms are similar to meniere's and that vestibular migraine and meniere's have such similar symptoms they can misdiagnose it. However, I don't have hearing loss or vestibular damage in the affected ear, but I do have frequent headaches. I guess that is what he based his diagnosis on. I am going to get a second opinion about the migraines from a headache specialist (neurologist) before I seek medication. Who knows. To be honest I'm exhausted trying to find the answer. So sick of seeing all these doctors. Like my Mom said to me the other day, at some point you have to trust them, so maybe it's time I just trust them that it's vestibular migraine... Jess |
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Hi Andy, Glad you are feeling a bit better, but like you it is the other symptoms now that make me more fed up. If it was just the swirly, light-headedness, I think I could cope better. 'Wobbly' eye-sight, if that makes sense, (nothing seems to stand still), the neck aches and muscles stiffness and again, like you, fullness in the ear and tinnitus. Also for me, I have horrible pressure on top of my head which makes my head feel as if it weighs 100lbs. So whilst not pleasant Andy, it is the joys of labs and will take its time. It really is glacial pace healing. I totally understand about will we ever feel normal again - well, the neurologist I am seeing, says we will as it is not a life sentence. I have to hang on to that. As for the cinema - I actually did enjoy myself. Was a bit fearful for the noise etc, but was fine. I think because I haven't been to the cinema in quite a long time, I wasn't used to it, but it gave me no problems at all. So go for it! Even had the ice-cream as well! Good luck to your mum, Andy - she will be fine and so will you. These situations are all testing especially when you have labs, you will find strong resolve to deal with it. Hope all went well with your MRI Gary? Hugs, Gloria x |
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The MRI went fine Gloria, thanks for asking :) I had a look at today films and compared them to the ones from 6 months back and the tumour looks the same size and shape, I'm no expert on these things but it looked ok. Have booked an appointment with the same neurologist as last year in two weeks, so will go in armed with loads of questions! He may be right, it might have been there all along. I'll ask about the auditory nerve and stuff and is there ways to test has it been damaged, try and narrow this down a bit more, because I still haven't got a proper diagnosis. Doctors don't want to commit to an answer when they hear about the tumour. Oh, and I'm afraid I don't understand the stuff that Rich was talking about, I'll be starting from scratch and that's pretty advanced stuff! My cousin is Professor of physics in Nottingham University so will hopefully help out if needed. Weather still nice here - hopefully it continues! |
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Hi All, Andy - Glad you feeling better mate, I do feel keeping busy is the answer to this thing, for one it stops you dwelling on things and another, I don't know if its the same for you, but after I have done anything that involves stretching myself and making myself a bit dizzy, I do actually feel less dizzy later, strange I know. Also for me the added bonus of actually being able to do something that I was sure I wouldn't have been able to do say a week or a month ago. I do think a lot of my problems now is anxiety. I have local shops about a 5 minute drive away, I am sure I can drive that far without any effects on the dizziness but yesterday I was trying to psych (probably not spelt right) myself up to go but in the end didn't. In a way I just can't ever see myself being the carefree person I once was. The reason for saying that is the fact that you are able to go the the cinema with friends and for me the anxiety of such a task would be too much and I know I wouldn't go. Hat's off to you for being so brave. Gloria - It's so nice to hear that I am not alone in this and not going mad, sometimes I feel I am. I had friends over last night who all said how well I look. I can even walk in a straight line now and not hold on to anything so even moving around my house I look just fine. Being my friends I know they all believed my symptoms and were sympathetic but I couldn't blame anyone of them for not seeing how bad I actually feel. The job is going fine thanks - I do now have my brain back, most of the time - HA. It's not something I am going to make mega bucks at but hopefully it will pay the food bill at the end of the month. I am just wondering if you still have the turning the head dizziness - I am still suffering with this, it's not as bad as it used to be but it is still there, so annoying!! I have my first ENT appointment on the 19th so hopefully this may bring some answers and I will actually get a diagnosis that this is labs. It's only took 5 and a half months to get there but fingers crossed it wont be a waste of time. Hope everyone enjoys the day Shirley x |
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Hi everyone I did post the other day but it went astray. I have been feeling quite woozy these last few days and very drowsy which i think might be hayfever. It doesnt normally make me feel so drowsy but I think anything on top of labs makes the symptoms so much worse. Shirley good luck with your ent apt although dont hold your breath for answers. You do sound as though you are making progress and I completely empathise with what you said about not daring to do things with this because it too much of a challenge, you just avoid it rather than put yourself through it. Gary and Gloria I did mention in my post that went missing that my boyfriend was so inspired by the solar system series he has bought a telescope! By the way both of you have mentione memory problems and I found an article below which might be of interest http://www.backgroundfacts.com/menieres/COGDIS.htm Anyway got to do some VRT now despite my wooziness. Does anyone know any really challenging ones to do that aren't just cawthorne cooksey or heel to toe. My wobble board has still not arrived. Take care Jemma x |
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Gloria: It's actually a relief somehow to read your symptoms and how they match mine, especially the "wobbly" eyesight which is what gets to me most a lot of the time, particularly because I spend half my life in front of a computer! This afternoon in particular I'm feeling alright really - When I went out for my lunchtime walk I came across a discarded tennis ball, so used some of my walk as a bit of extra VRT catching and bouncing the ball while following it with my eyes. Doing that while walking along didn't really mess with my balance at all, which I guess has to be a good thing! The worst thing about sitting here saying I feel okay is knowing that in thirty minutes or an hour I might not again - If only I could bottle these good moments! Still, I've booked tickets for the two films I want to see up in London at the end of May - One in particular is something I've wanted to see for a long time, so I'm hoping I'll be able to make it to London *and* enjoy the movie!! Maybe the challenge will do me good. |
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Something funny going on here. I keep posting and it's not showing up! |
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Hi all, Just got back from seeing a new VRT physiotherapist. This one is NHS and not private. Can't afford to carry on with that. Isn't it amazing how all these professionals in the same field have different levels of knowledge and expertise. This lady queried why I hadn't had any ear/balance tests done. I told her that the ENT consultant that I saw - privately (loads of money!) said it wasn't necessary in the light of the use of MRIs these days. Clearly she thinks differently. She doesn't know why I am having so much problem with my head neck muscles - mentioned that old tension headache thing again - which if someone else says that I think I will swing for them! Anyway, nuts and bolts are - I must go back to doing my old VRT exercises. It is no use just doing more robust stuff, like the gym, aerobics cycling but to do them AS WELL. VRT exercises must be done 2/3 times a day at least for at least 5-10 mins. She said a lot of people stagnate and don't move forward with this is because they don't persevere with VRT ongoing. Jemma - she did mention that if no improvement in 3 months then get my GP to refer me to a neurological/balance centres of which there are 3 in this country: Medway, Kent, Leicester and Queens St where you mentioned in London. I might just do that anyway with my GP. She's due to go on Mat leave and can you imagine what it will be like trying to explain all this to a new GP?!!!! I have to see her again in a month. She offered no hope of immediate return to full recovery, but then said what the neuro said which was 2 years. I suppose they cannot commit themselves for fear of people suing etc. So, off to do some head shaking and toe to heel etc. Hugs, Gloria x |
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Jessica, if you have a facebook account, you can log in through that, and your comments should pop up here on the site straight away. I think Rich has to verify everyone's posts before they are allowed through here so it's whenever he gets a chance to do it. With facebook, he doesn't have to do that. [Also, my gmail account has decided to sometimes classify the "New Comment Posted" emails as spam so sometimes I miss them until I think to check the spam folder. I've been a bit lax over the last few days as I'm feeling a bit ill with a chest infection - Rich] Jemma, thanks for that link, I'll have a look at that now. Good to hear that your boyfriend has gotten a telescope, hopefully he keep an interest in it, and if he can handle the cold, winter is the best time for observing. I bought one at Christmas, it got a bit of use around then alright, but with the brighter evenings now, I don't bother so much with it anymore. Today has been a dizzy day - I took our new dog out for a walk earlier, it's actually a good way to meet people. Usually people just ignore you when you walk past, but other dog owners can't help themselves as our dog is a cute little thing, she's only 3 months old and they come up for a chat about her. Also it's good exercise for both of us! Gary. |
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Hi Gary Try not to worry too much about having a dodgy memory. I can smile about it now it's over and my best mate still laughs at me for it. Cheeky git. I talk nonsense at the best of times. Imagine poor him having to listen to me tell him the same rubbish 4 or 5 times over. I couldn't remember things people told me, things I was supposed to do, couldn't take in any new information, I would read a sentence and then have absolutely no idea what it was about. Mental! As for going back to College/Uni. I'd go for it. Sitting around waiting to be well doesn't happen. You just grow weaker, less motivated and more aggravated. Your brain will cope if you keep pushing and in turn your memory will improve faster. Maria. Great news from you! Keep it up! :) Sandie and Gloria. Hope you girls are doing ok and there hasn't been any more pavement diving :) Lots of love Katiexx |
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Hi everyone My last few posts have just appeared on here, I thought everyone would have thought i had disappeared! Anyway Gloria interesting about the new VRT therapist. My NHS therapist is not that expert in dizzy people. I did speak to someone on the phone who could see my privately but she is based quite a distance from me so I just stuck with the local NHS one for now. She said the same thing, do the exercises 2 or 3 times per day for at least 30 mins total and dont do them too quickly as the brain needs time to process the correct balance information and also the muscles are made of a gloopy substance that needs to stretch out slowly rather than quick sharp movements. i am sticking with it but they are so boring and repetitive you do wonder how much they are helping. I don't know if i said before Gloria that everyone on that Labs website goes on about Dr Pavlou being really good. Also Prof Linda Luxon. I think they charge about £175 for first session and £125 thereafter. If I were you I would want to have the balance tests, caloric etc just to check the extent of any vestibualar damage but of course its quite likely nothing significant would show up but if it does then you know exactly what you're dealing with. I would be delighted if someone said to me I will feel normal in one more year, ie two years in total. I do hope they're right!! But we all know doctors can get it so wrong. Lets keep the faith for now anyway. Gary, your new dog sounds cute. It should keep to active. We have 5 hens at our house and they keep us busy as they always want feeding. Andy hope your films go well. Like Gloria I have found the cinema to be ok so hope you do too! Jemma x |
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Hi all, I'm back from paradise :( I have to say that the flight was fine. A friend of mine told me to use the wax that swimmers put in their ears so water doesn't get into them. I used the wax in my ears on take off and landing. It worked! I didn't feel any pressure change at all! I have been feeling fine. I have very short moments when I have a bit of a swirly head. It lasts maybe one minute. then my brain seems to adjust and the feeling goes away. Weird huh? We went on two boat trips. I was scared of that for multiple reasons. One I tend to get sea sick easily, two I didn't want to ever feel like I was rocking on a boat again after labs!! LOL I was fine though. I took half an antivert before boarding. I even swam under the water to dive for shells. I was fine. I haven't submerged my head in a year. I'm not exactly going to make a practice of it though. Gloria, love your new profile picture! Jessica, aren't all these opinions so confusing? In the end I think you have to just decide who is right. Base it on what your gut feeling is. For all you Brits, there were many families from Great Britain on Captiva Island. Love to listen to your accents! Hope all is well with everyone. Tomorrow is my baby girl's 8th birthday!!! I have to get ready for her party. Melissa |
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Hi all, Just typed a long post and put wrong e mail address in and lost it aaagh.40 now cant cope!!! Hope all is well with you all.I have been okish now for 3 months, oiccasions when i get the funny head feeling and i thing oh no hear it comes again but so far so good.I have developed again when i am stressed a breathing thing that i used to get..i feel like i have to take a deep breath of deep yawn adnd sometimes cant.When i do its such a relief and it feels like it comes from way down in my stomach..dr diagnosed stress and i remember the first time i went to gp with it was 1998!! I also have post the feeling i need to swallow all the time over the past few weeks now the weather is better??? thought it may be the labs post nasal drip i developed but could it be hayfever which i suffer from occasionally.. Melissa..happy birtghday to your daughter, they grow up so quick out twins are 10 this year..Where are you having the party and rae you glad to be home? Gloria..you look really well on your new photo, hope you are ok I can symphathise with everyone with memory loss i thought i has early alzheimers i was scared.Now the labs isnt as bad my memory is alot better but still not 100% Must go as off to work. Love to all Penny x |
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Hi I have been reading all the posts here and am comforted that I am not alone with this cruel illness. I have had Vestibular Neuritis for 5 months now and have been routinely doing VRT which although I think is helping it is certainly not an overnight cure! I am going back to my GP this week to see if I can get a referral to Queens Square in London as I have never had any of the tests like caloric etc, so never really a formal diagnosis. I have heard that Prof Luxon or Dr Pavlou are the ones that really know their stuff. You are just always searching for answers I suppose. Every day I have this residual dizziness that never leaves me and it is heightened by tiredness and anxiety. This most certainly curtails your life and all I want is to get back to the way I was, but sometimes I feel I will never get there. I am trying to be positive but it is hard and sometimes depressing. Hope all you fellow sufferers are having a better day. This is a great site for sharing experiences. Thank you Donna |
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Donna, You are not alone! You will feel better. This rotten disorder takes a very long time to heal. It takes months and sometimes years. Keep doing your exercises and eat healthy. Try to avoid caffeine and salty foods too. My one year of labs is the end of May. I started to feel a recovery about two months ago. I still have moments of a swirly head. I also sometimes walk into a room and I feel it and then my brain adjusts and the feelings go away. It is the worst thing ever to go through, but you will come out a stronger person!! Penny, my daughter is having a few of her friends sleepover the house this Friday. I may need some wine to help me through this party. LOL Melissa |
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Hi everyone, I actually had a pretty good weekend... My mum came home safe and sound from her hand surgery Friday evening, and she's doing pretty well aside from the whole thing being rather painful and annoying (she'll have her hand in plaster for as long as 10 weeks!), but I also had a pretty good weekend in terms of feeling like a normal human being! I had odd moments of "swirly-headedness" here and there, but overall it was a couple of definitely good days. Things haven't been quite so good at work today, but then again they haven't been bad either so I can't complain - Hopefully things are on the up again! Donna, I've had this thing for a little over five months just like you, so I know exactly how you feel! |
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Hi everyone: I don't post very often as most of the oldies already know. Had six very good months, but the last week has been up and down, like the old days, except a milder version. Feel like I'm being pulled down to one side when I'm walking, dizzy but not terrible, and stomach's a bit unsettled (which always bothered me when I was suffering before.) But one day is bad and the next day is fine. Anyway guys, what I'm trying to say is that it will get better, but there will be relapses, each one milder and further apart from the last one. Sorry some of you are still suffering, but try and appreciate the periods in-between when you are okay. This illness sure gives you an appreciation of the importance of good health. Gloria, sorry to hear about your fall, but your picture looks nice, nice beach in the background. Hope things improve for you, and Jemma, it's been a long time for you too. Sandie, sorry to hear you had another blip,but you cope well with it, and have a very good attitude. Katie great to hear from you. You will need all your memory to pursue university studies. Good for you! I guess if the nerve has been damaged, there will always be relapses, because there is more sensitivity in that area. Keep the faith eveyone! love, Maria |
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Hi everyone, Just back from another short trip down to the west country to see my family - ANOTHER uncle was 90 years old. Hope that means longevity runs in the family!!!! Not good on the dizzy swirly head though. Still can't seem to shake off this bad run. Like you Maria, when it is a bad turn, my stomach churns and is so upset having to run to the loo etc! This week-end didn't help at all really, because of the celebrations I have had to be chatting, making conversation with people you don't really know and generally be sociable plus having to repeat everything to my uncle because he is so deaf!! Melissa - I am absolutely thrilled for you that your trip went really well. I bet you feel tons better for getting away, doing stuff without too much labs rubbish! Happy belated birthday wishes to your daughter. Donna - good to hear from you too. I am at 10 months and am thinking of asking my doctor for a referral to Queens Square. Have seen a private ENT who just had such a casual air that it was labs and I will be over it in a few months. Referred me on to a neurologist because of all the head, neck muscle pain and stiffness. He has just said it is part and parcel of the whole thing, take some brain numbing pills and be patient!!! This is not the help I intended or need. I want something a lot more definate from people who you have confidence in, that actually know the minutest details of all the symptoms you can have with this and can suggest what to do or not to do. I have never had any caloric or other tests done, so have no clue about how badly I have been affected. I will be interested to hear how you get on with your referral Donna. Lovely to hear from you all - Penny and Maria good to catch up with you both. Have good days - taking it easy today, unpacking my stuff and not going to talk to anyone!!! I've had socialising for a bit! Love & hugs, Gloria xx |
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Hi All, The good news: I've been good now for over a week, the turn your head dizziness has definately improved and I have driven the car a few times without too much problem so absolutely thrilled and hoping it will last. My main problems are now visual, going to the hospital yesterday had problems walking into the waiting room and came straight out and waited in the corridor. Again once I got used to the lighting things improved. Also anxiety is such a major problem these days. Bad news: Had my first appointment with an ENT and guess what: Yes it didn't go well. I've waited since Christmas to see this man and I got his registrar. The man looked at me just the once, asked me questions on how this all started, told him the story of the spinning vertigo which I got only twice at the beginning, told him about the 24/7 dizziness from then on, etc. etc. He didn't want to know how I was feeling now, how I had improved lots, he also insisted that I had BPPV and not labs. Now I have read my stuff and read most pages on here and I don't think I have this and I told him this. He said that if I had dizziness when turning my head then it was BPPV. He didn't want to know about the visual dizziness or the anxiety. As you can tell I was not happy. So to cut a long story short, I complained to the audioligist and he told me to go the PALS which is an organisation that deals with complaints. By the time I got home I had a telephone call from the consultants secretary telling me to come along on Friday, after surgery and see the actual consultant I was meant to see. YEY. Now I'm nervous - HA. Hope this man is better. I had a hearing test which came out fine and they checked my ear pressure and that came out fine (which is strange because I do feel pressure in my bad ear). I have to go back for the caloric test in a couple of weeks - has anyone had this done? I am so nervous as I really don't want to have the vertigo again, but they have insisted I have it done so they can assess the damage. They also told me it will take about an hour and a half. That seems an awful long time. Hey ho .. Hope everyone is enjoying this lovely sunshine. Shirley x |
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Hi everyone Maria lovely to hear from you although not so lovely for you that you're going through a rough patch. I really hope it is short lived and you get back to how you were a few weeks ago when you felt you were totally over labs. Melissa great to hear your holiday was a success. I bet you are so happy that you are all but over this now and can hopefully just get on with your life. Gloria glad you are ok, I thought you had disappeared! I definitely think the ENTs should have done some vestibular testing on you. Can't believe they haven't (well I can!). If you can get to Queens Square I have heard they are really good so it may be well worth it. I haven't been too bad lately. The dizziness seems to have improved although I still feel odd quite a lot and have problems talking to people for any length of time or going in shops and busy places etc. I have felt a bit drowsy at times which can make the woozy feelings worse but overall I cant complain as these last few weeks have definitely been better than I have been with this. I am at the one year point now. I told my boyfriend and he said 'do I need to buy you a gift?' - one year labs anniversary. God I do hope by this time next year I will be over this!! Shirley I am afraid your ENT story is all too familiar. I was diagnosed with BPPV at my first NHS apt and saw the registrar not the consultant. I have never seen the NHS consultant yet, that's why I went private. I paid privately for the caloric test and was told there was nothing wrong with my ears. It is worth having it done so you know what you are dealing with but even if it doesnt show anything dont let them tell you it isnt your ears because my neurologist told me the test is not completely accurate, it only tests one fifth of the balance mechanism and therefore I think it only shows anything for people with worse damage. Donna - do you post on the Emma Ilia website? I really empathise with what you say and like you my symptoms are worsened by tiredness, stress and basically any change in my routine etc. I really does try your patience and your resilience but keep fighting! Take care all xx |
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Hi not having a good day at all. Still have this residual dizzy feeling 24/7 Melissa - Thanks for your kind words of encouragement. It is great just being able to make contact with fellow sufferers. I just wish people would educate themselves a bit more about what this illness is about. I have received a few prejudiced remarks but usually from those who cant be bothered to learn more. I think because you look fairly normal, people just think you must be. There doesnt seem to be a linear recovery from this as I have had so many up and down days. Good to hear that you are making inroads. I will keep going with the vrt and hope . Donna x Gloria - Thanks to you too. I am going to see my gp on Friday so I will let you know how I get on with a referral. I was speaking with a friend this afternoon and was asking her how she thought I should approach the whole referral thing and she said I should just tell him it is what I want. Wish I could take her with me ,but shes away up in Aberdeenshire! Hope you are having a better day Donna x |
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Hi Shirley, Sorry you had so much trouble with that dumb doctor. I guess it's not life-threatening so they just aren't interested. Don't worry about the caloric test. It's not bad at all. Mine only took half an hour. It's good to get answers, and if there is a problem it will show up on that test, although the test isn't that accurate. You will feel nauseous and dizzy, but it doesn't last that long, and that is a sign of a healthy verstibular system. I had no after effects. Hope you do better with your other specialist. keep us posted. Gloria, I still can't understand why we get unselttled tummies when this happens. Almost like a type of flu.Do you get a low-grade temperature too? I can get that, but then it goes away. Good for you for doing that trip. Aren't you brave? Take care everyone, we are all in this together. Maria
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Hi feel bad because forgot to say to Jemma that yes I do indeed post on Emma and Ilia's website. Its great too. Hope you are feeling a bit better today. Donna x Andy have you got vestibular neuritis and if so did you have a caloric test everyone speaks about? Sorry you have had it so long too, you just want to wake up tomorrow and for it to be away. Think in the long run this thing will make us all stronger human beings though! Take care Donnax |
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Hi all, So many of us feeling well, then bad again, then well....its so depressing...i am still ok though. I feel that there is an end to all these horrible feelings so hang in there everyone we will get each other through it. Try to focus on something to look forward to that seems to help me alot.. Penny x |
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Donna, I haven't had any exact diagnosis apart from being told that it's almost certainly "an inner ear thing" - I've had hearing tests (I have some hearing loss on one side), some very basic balance tests (basically whether I can stand up straight with my eyes closed) and that's it. I'm due an MRI at some point on the NHS, but I've heard nothing more about it since that was supposed to be arranged just before Easter. Shirley, I feel that the "visual dizziness" as you describe it is my biggest problem too... I feel like the way I see the world is what makes me feel odd more than anything else, although I suppose it's hard to tell really. What visual symptoms do you have, out of interest? |
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Hi Andy I'm the same as you - it's the visual thing that makes me feel the worst. It's what I call brain fog - it's like looking at the world through a goldfish bowl, or through someone else's glasses. It's weird - it's not that stuff is out of focus, as I've had my eyes tested and they're fine - but things just don't look right. I also have hearing loss, in my left ear and constant tinnitus, which gets louder when the dizziness is at its worst. For those of you going for caloric tests, I had a 15.2% "left sided canal paresis" which is just a weakness in the left ear. The threshold is 15%, so it was just marginally over, but I did notice when they blew warm air into my left ear that I wasn't as dizzy as when the cold air test happened or on the right ear. It's worth getting done, but don't be surprised if nothing shows up. I was able to drive home after the tests, they're not too bad. Everything else was fine, but we all know that something is not right with us, despite what the "experts" say. Katie, good to hear from you and thanks for the advice about going back to college. Thats the plan at the minute anyway, but if September comes around and I'm not much better I'll push it out till next year as I'd lose out on the free fees by dropping out - that's worth €7,500 per year over the 4 years, it's a lot of money. Gloria, thanks for the post on Facebook, I'm seldom on there but I'll put up a picture of our dog when I get back to Maynooth over the weekend. Gary. |
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Hi Andy - My visual dizziness is a bit like Gary's but I mainly have problems inside, like when I shop in the supermarket, or going from outside to inside. I'm sure it has something to do with the lighting. At the hospital the other day I could not go into the waiting room as when I walked in it was buzzing with people and the lighting was quite low down (ceiling was low). I had to wait outside in the corridor. But after the hospital we went for lunch in a local pub and I was perfectly fine in there. Today I woke up with pressure in my ears. I slept last night with one less pillow as my neck has been giving me grief. I woke up this morning with the pressure so am now wondering if I have a problem with my sinuses as I also had the feeling of pressure just above the bridge of my nose. I have gone from someone who nevers suffers with anything to someone that constantly talks about the symptoms she's getting. Feel sorry for the people that have to listen to me - HA. Shirley
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Hi all, I don't know if pollen is an issue over in Europe now, but it sure is here in the US!! My ears are so full right now. They are crackling and when I blow my nose, I feel so dizzy. I have been fine with the dizziness otherwise. Every once in a blue moon, in a store usually, I get that feeling that the floor is moving under me. Then I think my brain adjusts and it does abate. Gloria, yes, it sounds like longetivy runs in your family. 90 is amazing!! I have never had the caloric testing. I really felt it was a waste of time and money. Everyone seems to have the same result. Nothing is wrong according to the test. That is a bunch of B.S. I wish we could start some kind of vestibular awareness program. All we need is one movie star to get struck with this crap and it would be all over the news. LOL I have so much to do and no time to do it in. Keep the faith, Melissa |
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Shirley, I know what you mean - I'd literally not been to see a doctor in over a decade before this started! I used to really struggle going into shops because it made me feel so weird, but now I normally feel okay although occasionally it suddenly hits me, and there's one particular store near me that always makes me feel as if the whole place is tilting at a weird angle! I've been tempted to try using sunglasses when I'm out to see if it reduces the visual side of things at all.. not sure if anyone else has tried this? Going outside to inside does feel weird too, but it's more the general feeling things aren't "stable" that bothers me, especially using the computer or reading. When I have days when I feel better that disappears almost entirely, but it's very noticeable when I don't feel so good. |
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Hi all my Sharp Blue Crew pals! Having such a rubbish time lately - it really makes me wonder if I am with this for ever. I know what everyone says, but I feel so low at the moment it is hard to be positive. Sorry to be such a glum. Gary - like you, I too, don't go on Facebook that much but would love to see a pic of your puppy. Do you find it helps to take your mind off things by having her as a distraction? I thought I might like to get a puppy - had a retriever years ago -he was our best mate! Have so much brain fuzziness on the top of my head and pressure behind my eyes like I have bunged up sinuses - just as you have described Gary/Shirley. Really feeling sick and, Maria the same as you with the upset tummy, wobbly legs, and feel as if i am going down with something. Oh, and not forgetting the funny vision thing - now what else!! Andy - again going from outside to inside makes me more unstable for a while. If I related all this to anyone else they would certify me as a hypochondriac for sure! Melissa - you have hit the nail on the head when you say that if someone famous got this the whole world would know! Do you think it is hayfever/pollen that has made you dizzy again or do you think it might be catch-up from your recent trip? I am sure i feel so bad because i have done so much lately, ignoring how I feel and carrying on as normal. Just can't be done and i think that has made me depressed as well. Donna - you say you have vestibular neuritis - what is the difference between that and labs - do you know? I'm sure mine is more like that because of all the horrible 'tenderness and soreness I have at the back of my skull just as if the nerves are all raw and sensitive. Jemma - at least you are having better days. Let's hope & pray you are on the up at last. Long time coming eh? Thank you all for listening to my ramblings. Keeping the faith - just! Hugs, Gloria xx |
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Hi all, Happy anniversary to me, Happy aniversary to me.... (sarcasm). Well today is my 26th wedding anniversary and my 1 year anniversary of having labs. I'd rather celebrate one without the other. Oh how I remember a year ago how awful I felt and how terrified I was not knowing what was wrong with me. And on top of that, my husband was surprising me with a trip to New York to celebrate our 25th. Of course we had to cancel (fortunately got our money refunded). I felt so guilty and so sick!!! Well we have rebooked our trip to NY for the end of May. We are really looking forward to it although I'm a little apprehensive about how I'll feel. I really have been doing soooo much better the past few weeks. Stronger physically, less lightheaded and less achey. It is so encouraging. I still need to remember that I can't do stuff everyone else does and stop comparing myself to them. Please hang in there everyone even if it's just by your fingernails. |
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Gloria Keep the faith I am sure you will get better. I have just started to see some improvement in the dizziness since doing the VRT every day. Is it coincidence? I dont know but I am still climbing Mount Everest. I am still really off balance and weird in shops and busy places. Still dont dare to do any social events or book a holiday because i know i will feel off balance and still incredibly tired. However i am seeing some light at the end of the tunnel so praying it continues. Susanne Happy anniversary! My boyfriend and i celebrated 10 years together in January except we didnt do anything to celebrate due to labs! Lets hope next year is different and we can celebrate. I do hope your holiday goes well. I have a week off work next week thank god I need it!! The stresses of work certainly dont help with recovery from this thing. Catching up on the work when i go back is not something i am looking forward to though. Andy I think I know what you mean with the vision thing. For me it is as though my vision isnt quite matching with the vestibular information my brain is getting from my ears. At the beginning i found lights too bright and was wearing sunglasses a lot. I still feel the same but a lot more mild now than at the beginning. Hope everyone else is seeing better days! x |
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Hi All! Spent considerable amount of time reading everyone's experience with Labyrinthitis. I was diagnosed 3 weeks ago, following a bout with Bronchitis that wasn't easily going away, and, explaining routine dizziness, vertigo "spins", imbalance, questionable vision, and difficulty focusing on work & conversation. Meclizine helped, but not 100%, then had bloodwork, MRI w/ contrast - turned up fine (no tumor, etc). Now I'm going to Vestibular Therapy twice per week, "re-training" my eyes & brain to recognize & accept head movements, depth perception, 3D images, balance, etc. Noticed this week that my ears feel slightly "clogged", however, I can hear fine (accept when I'm in a crowded room...). I have not had vomiting as many of you have experienced, but I struggle with mood swings having to deal with this whole experience (I used to be very active, coaching both my daughter's travel soccer teams). My hope is that the VRT will help, as I so want to return to some level of normalcy - I wish everyone all the best as well. |
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Hi and welcome Todd. Sorry to hear that you have just become a new 'recruit' to this wretched thing. VRT does help and if you can still do your soccer training, I think that will help you along much more rapidly. I wished I could have been more active at the start rather than further down the line. Susanne - a very Happy Anniversary - wedding not labs! I am thrilled for you that at last you have felt quite an improvement. I am yet to discover that feeling. Finally succumbed to going to the neurologist who has now put me on an anti-depressant (Escitalopram). Whilst I didn't have anxiety and panic attacks that bad at the beginning, but with this relapse they haven't been too good. I think that and here I am at 10 months it has all been a bit too much to bear. I'm getting the morning nausea as soon as I wake up with sweats again which I had 6 months ago - NO I'm not pregnant! Jemma - hope you have a lovely week off and a good rest. I was going to ask you the same question - do you think you feel better because of the VRT. What exercises do you do every day and how often a day do you do them? Melissa - how are you doing and Shirley & Andy. By the way, Andy, hope your mum is doing OK after her operation & you are coping. Onwards & upwards - still !!!! Hugs, Gloria xx |
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Gloria - My Mum is coping really well, even though she finds only having one hand really frustrating at the moment; she's managing to do a lot of things she thought she wouldn't be able to! Hopefully the heavy plaster is coming off today to be replaced with something more lightweight, which should make life a little easier still. As for me, this is probably my best week yet - Not perfect by any stretch, but in generally I've been feeling a whole lot better, particularly over the last couple of days. The worst thing is not knowing if this good spell is going to continue, but for now I'm making the most of feeling a little more normal. |
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Gloria, it sounds like the nausea and sweats could just be side effects of the anti depressant you just started taking. You may want to discuss that with your doctor. If that is the case and it persists, you can always switch anti depressants. Just a thought...I do think that my dizzies (which are so benign now) are from allergies. I woke up today and I had goop (sorry gross)in my eye. My ears are full and crackling and I am blowing my nose constantly! I'm taking Allavert and a nasal spray. The pollen here is awful. I have to say that I really don't feel that off. It just hits me quickly and then goes away. Susanne, Happy Anniversary only for you and your husband, not your labs anniversary. My one year anniversary with this is May 25th! By the way, I live 15 minutes outside of NY. You'll be in my neighborhood. LOL When you fly, make sure to put the wax that swimmers use to plug up their ears, in your ears upon take off and landing. It regulates the pressure. Jemma, I'm so glad that you are feeling better. Keep doing your VRT exercises. I always slacked on doing them. Welcome Todd. I do hope that your bout with labs is short lived. This is a great blog to just get out all your feelings. I now have to paint the trim in my bedroom, clean my entire house and decorate for my daughters sleepover party tonight! There are not enough hours in a day. Melissa |
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Hi folks: 35 Year Old Newbie here. Thought I would post about my last 10 weeks of misery with what I believe to be Labs. Buckle your seat belts. 2/8/10 - started feeling woozy at work. Not vertigo. More like a dizzy like I'm "on something" or like I had a few drinks feeling. This persisted off an on for a few weeks an would come and go. At times I felt I was fine. I thought it was GI related, so made an appointment with a GI docutor. 2/24/10: Met with GI doctor. Feeling the same. It would come and go. I would sometimes sweat, get the chills, etc, and noticed weird vision at times like difficulty looking at striped patterns. He suggested evaluating gallbladder and upper endoscopy since I have GERD (reflux). 2/26/10: Found a great website. www.anxietycentre.com The founder personally struggled with dizziness, ear, vision issues all related to anxiety. So, I thought Chiropractic could help me. Visited my first Chiropractor on this day. Cracked my lower back, upper back, neck, and jaw. I had injured my jaw 16 years earlier in college. It wasn't bothering me (rarely did) but knew it was still out. 2/27/10: Felt great for the first time in 3 weeks, other than having a head cold. Sinus opened up and I had a lot of sneezing. But dizziness, feeling "weird" sensation was gone at last! Yeah! Jaw very sore. 3/2/10: Second chiropractic adjustment. Again, adjusted my lower, upper back, neck, and jaw. Jaw really hurt. Left the Chiro feeling dizzy...weird vision. It was a constant dizziness unlike the more "periodic" from before. Started to panic. Called Chiro who said it could happen and should pass. 3/3/10: Woke the next day with the same feelings. Feeling heavy headed, heavy feet, etc. Googled "dizzy after chiropractor" and the first thing that comes up is "stroke" so I went to the ER. They found nothing wrong, but didn't do any scans and thought it was stress. Had some nausea. 3/5/10: Went to my primary who felt it was inner ear related. Right eustacian tube was not opening well. Left would clear okay. I asked about jaw..he said he didn't think it could be, but maybe. Gave me flonase and claritin and said it would clear. More nausea. 3/8/10: No nausea. Flew to west coast (from New England) for a business meeting. Took afrin on the plane. Ears popped like normal during flight. 3/9/10: Flew home...same as flight out except without the Afrin. Noticed left ear felt very stuffy on the way out. 3/10/10: Both ears felt very full after the flight. I noticed at times one ear or the other (usually the left) would go quiet and ring very loudly for 20 seconds or so a couple times during the day. Left moreso than Right. Jaw still sore from Chiro visit. Had gallbladder ultrasound in the am. Gallbladder is normal. 3/11/10: Same feelings. Had upper endoscopy and was but under anesthesia (propofol.) Procedure went fine. Diagnosed with mild gastritis. Everything else clear. 3/13/10: I got dizzy in a store today for the first time. This didn't happen before. Also, this is the first time I got or noticed constant tinnitus. I noticed my ears no longer did the quiet, loud tinnitus thing like the prior days. But I they just rang constantly. It is fairly faint / mild and high. I can usually ignore...but it is there. By this time I have been freaking myself out reading about miserable people with Menieres disease and fear I"m going to be like this forever, have to quit my job, financial ruin, and be a terrible husband and father. Panic. 3/18/10: Visited Tufts Craniofacial Center in Boston because my jaw still hurt and TMJ issues can cause dizziness, vision, ear stuffiness, and tinnitus. They felt it is TMJ related. I have difficulty watching TV or Youtube because I get dizzy. I feel very heavy and weird at times. Vision feels like I’m looking through someone else’s glasses. I see bright patches in my vision at times (not spots...more like burn in.) I also notice a lot of floaters and my eyes seem to see wiggles or things moving if I"m looking at busy patterns. 3/19/10: First visit to ENT. All hearing / ear drum tests normal. Verified right Eustachian tube dysfunction. But otherwise normal. ENT doctor felt it was perhaps Nerual Labyrinthitis. Ears looked normal otherwise. 3/20/10: Started 10mg Prozac at the insistence of my family. 3/24/10: Visited Therapist because I was cracking. Crying daily. My wife was due with our second child any day and I was freaking about how I felt and thinking I wouldn’t be able to make it through he birth. 3/25/10: Visited new chiropractor who showed me how screwed up my musculoskeletal system is. Also visited neurologist who did initial exam and didn't find anything. Said to come back after the baby if I was still unwell and he would do an MRI. This is the first day I felt more normal...the Chiropractor had me convinced it was jaw and that it would heal over time. I have hope and confidentially feel better, not 100%, but better. I watch TV and try to enjoy life for the first time in 2-3 weeks. 3/27/10: My wife and I welcomed our second daughter to the world. She is wonderful. I still feels off and am stressed and mad the Labs (if this is what I have) “tainted” the birth of my daughter. 3/29/10: Off from work on paternity leave. Feeling off, but managing. Mom and baby are great. I got a new pair of glasses which seem to be helping the vision. The eye doctor said all else with the eyes is normal. Feel very dizzy at times, particularly when shopping. Went to Target this week and thought I would fall over. 4/5/10: Back to work. Feeling about the same. Fatigued. Dizziness / balance is better, but vision is still weird. Ears are still full and ringing. 4/7/10: ENT Visit for ABR, ECoG, and ENG. All “normal” except for 17% weakness in left ear. Doctor doesn’t think it is Meniere’s and is standing by his Labs diagnosis given the tinnitus and aural fullness. 4/9/10: Notice vision is a bit better. I hesitate to think I’m getting better, but it appears I’m at least better than mid-March. Week of 4/12/10: More of the same. No worse…maybe better. Some days more so than others. I notice that on days that I am more stressed I feel worse. Coincidence? I received my splints this week for my jaw to help with TMJ pain. Had Brain MRI w/ Contrast on 4/16. 4/20/10: Had the best weekend so far. Went shopping. Vision was “bothersome” but not nearly as bad. Sometimes it takes me a while to find stuff on the shelf. But definitely better than before. Gives me hope. I also found a great website, www.upcspine.com that makes me think I have a C1/C2 upper neck issue given some of this got worse after initial Chiropractor visits. There are a lot of great testimonials here. Found a local Atlas Orthogonal (NUCCA) chiro in my area and made a visit. 4/21/10: Neurologist called and said my brain MRI was normal, but they found a “minor suggestion of bilateral cortical atrophy of the parietal lobes.” Great. This is basically a type of dementia and now they want to do more tests to rule this out. I doubt I have this as I’m only 35. Of course, feel worse today than before…due to stress. So…that is my drama. I have to admit, I’ve been through the ringer here. I’m still not convinced I actually have Lab’s as I never really had the “violent vertigo” that others have had. Still…I guess I did have a period of 1-2 weeks where I was more dizzy and couldn’t watch TV without getting nauseous. But this was about a month after I started feeling crappy in general. I can now watch TV and stores are better, but still bothersome. My balance is okay. I've done Yoga in the last week and can stand on 1 leg with head facing up. My biggest complaints today are aural fullness and tinnitus in both ears (left more than right), and “drunk vision” like I’m looking through a fish bowl, and sore jaw / neck. I have to fly next week for work and am a bit nervous, because last time I flew on 3/8 all hell broke loose 5 days later. I still wonder if this could really be labs, MAV, or TMJ, or just anxiety. The founder of www.anxietycentre.com had dizziness and tinnitus as his primary symptoms and he beat it and it was all stress / anxiety. I definitely think anxiety is a part, if not the root, of all of this. The one thing that gives me hope is I have noticed on this page that eventually people stop posting. Back around page 8-10 there was many different people on this board. They are now mostly all gone. This means (I'd like to think) they are better and moving on. I pray I get better soon so I can put full energy back into my family, being a good dad and husband, as well as my job. I have 2 wonderful daughters and feel I've been half a parent (or less) these last 10 weeks. Thanks! Brad |
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Melissa - if only they were the cause! I haven't started taking them yet!! I think I may have another cold virus - oh big joy. Have had a nasty cough and tickle last couple of days. Really pleased your dizziness is more allergy related and not severe. By the way, just love the picture of you and your hubby. Happy painting and cleaning - thing is, you'll be doing all the cleaning AGAIN after the party!! Have fun. Even though I feel YUK, am still struggling on preparing dinner for 4 friends tomorrow night. The sight of the food is not doing much for my nausea - at least I'm not tempted to nibble & helping to budge a few pounds of weight off! Have good time tonight. Love, Gloria xx |
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Hi Brad - welcome, My goodness, you have had a lot on your plate recently! Firstly, congratulations to you and your wife on the birth of your baby daughter. How awful for you to be going through what sounds like labs. As you have probably read from previous posts, we have all had various tests - all negative and the doctors unanimous opinions is labs. As I have been told, stress and anxiety and pressured situations certainly don't help. You are amazing to have coped with having a new addition to the family, worked and flown! I couldn't have done any of that certainly six months ago and I'm not sure how much I can cope with now to be honest. All of what you describe is pretty much what everyone on here has experienced. The fact that you are already seeing good patches, hopefully means it will be short lived for you. Again, a lot of us have gone through the chiropractic route, TMJ etc etc. It is because we all want an absolute definitive. Again, don't be surprised if it ebbs and flows which I think you have already seen. This is not a linear recovery - peaks and troughs until you are rid! I'm having a nasty patch again at the moment, but it isn't as bad as last year and I cope with all - or most - of my day to day stuff. Our mantra - keep the faith - this too shall pass!! Let us know how you are doing Brad. Gloria x |
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Thanks Gloria: Yes...I still have a TMJ / Chiro suspicion. Only because my jaw STILL hurts and it is now 6 weeks after I let my original Chiropractor adjust it. Big mistake. Bite seems off. Splints from Tufts are helping a bit. I have a question for people who are recovered...does the aural fullness and tinnitus go away too? Or will I have these forever? [I recovered fully with no lingering symptoms at all - Rich] I guess if I had to choose, I would choose clear vision, no dizziness and live with ear fullness / ringing. But I would like all to go away. Does anyone else get hot / cold / sweaty at times? I think this may be the stress of the whole thing. |
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Brad - I checked for the TMJ thing - my dentist said there was a bit of tightness but nothing extra-ordinary. However, he still managed to sell me a gum shield to wear at night! I forget to put the thing in but didn't notice much difference when I was religious about wearing it every night it must be said. Apparently, all the symptoms for most people do go away - I am yet to wait for that moment, but things are much less severe than last year. As for the sweats, hot and cold, bit shivery like you have a chill - even upset stomach - all part and parcel. I can also vouch for those!! My VRT physio explained that when your inner ear mechanism is off and your balance goes, it affects all the other auto-systems in the body, like temperature control, stomach function i.e. nausea/digestion and just about everything else it seems. Amazing eh?!! Like you though Brad - would just love it ALL to go away. Quick question - are you still taking Prozac and do /did you find it helps? Take care, Gloria x |
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Thanks Gloria. Yes...still on Prozac. Week #5...it is at least helping my mood and helps reduce the "free floating" worry / anxiety with this. Re TMJ...my problem is..I injured my jaw 16 years ago playing a game of hockey. It hurt for about 6 weeks and I had headaches. But then was fine more or less. About my 3rd week into this I went to a Chiro for stress relief. I asked him to check my jaw as I knew it was out from that injury all those years before, but it rarely if ever bothered me. Maybe 1-2 days / year max. That was 7 weeks ago and my jaw still hurts and my bite seems off. And consequently 12 days after the adjustment is when I had the Labs the worst, my ears started feeling full, and the ringing started in my ears. I have a mouth splint from the Tufts Craniofacial guys ($$$$$) and it makes it feel better when I wear it. But it still feels bad when I take the mouth splint. So for a while I though it was all TMJ. But after reading everyone's story, plus the UK Lab website, vast vast majority of my symptoms sound so similar to Labs. My only problem is, I really didn't have room spinning vertigo at the onset. I had dizziness / disequalibrium at first. It it's worse in early / mid march, I was nauseous and couldn't watch TV / Youtube. I also felt very heavy and dizzy at times. I have to recognize that today I"m much better than that. TV / web is not a problem. Balance is good. Heaviness is better. My biggest complaints now..."drunk" vision in certain environments (grocery store, etc.) It is better, but still there. I also get weird "floaters" in my vision, particularly if I"m looking at a weird pattern. For example, I have some gravel in my driveway (lots of very small rocks.) If I stare at them, I see things shaking / shimmering in the periphery. Also ear fullness and ear ringing are problems. I also get weird head pain (top of head like someone is pushing down) from time to time, so I think it is TMJ. This is where I get nervous as they did find a "suggestion" of atrophy in my parietal lobe in my brain MRI. Great. It's probably nothing, but now I need more tests. Just want to me "me" again. I feel like I'm going to be like this forever. |
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Hi Brad, I didn't have room spinning vertigo either. Mine was extreme heavy headed pressure, disequalibrium/dizziness. The drunk vision and eye floaters, ear fullness and tinnitus all on the check list! The floaters are now less, ear fullness less and maybe the tinnitus. That's only very bad if I get a bad 'off' period. You mention weird head pain - guess what - get that too. I have been a migraine sufferer all my life. (Not MAV though) and have never experienced such strange head pains, aches in my life before. If you have just got the head pain at the same time as all the dizziness etc, then I expect it is to do with labs rather than the TMJ. I am not a doctor or expert, far from it, but I don't think you would experience all these weird symptoms - floaters, drunk vision, spatial problems i.e. problem going into stores etc with TMJ. Really does sound like labs. Other people have had MRIs where they have found 'other' things going on, but have probably been there all along and would never have known if it wasn't for the labs check - so it is good to have these things checked out and with the knowledge that these days there is incredible medical intervention to cure all sorts - EXCEPT THIS DAMN LABS AAARRRGGGHHH!!!!!!! Time seems to be the only cure for that - you will be fine I'm sure Brad. Talking of MRIs - Gary - have you had the results of your MRI you had done the other week? Well - seems like everyone else (UK based) is out enjoying the sunny, warm week-end weather rather than being on here. Hope everyone is having better times. Hugs, Gloria xx |
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Hi Gloria Early start for you! Heading to the neurologist on Tuesday afternoon to discuss the MRI films I got the other week so will know more then. You asked about our dog - yeah, she helps take your mind off things a bit, she needs walked sometimes twice a day, so it's good exercise and forces you outside when you'd rather just sit there and feel sorry for yourself. When things are really bad she can be a pain though - hyper puppies running around are not so good when the dizzies are at their worst. Welcome Brad, congratulations on the new addition to your family. Mine and Gloria's symptoms are very similar, I have never had spinning vertigo either, have had fullness in the ears, tinnitus, eye floaters, sensitivity to atmospheric pressure changes, sometimes your head weighs really heavy, sometimes light, nausea, derealisation - this was a scary one, marshmallow feet - I thought this one was cool, despite it not being right. All those along with some others, but the main ones now are just tinnitus and brain fog, along with memory loss which I intend to ask the neurologist about on Tuesday. My recovery has stalled now though and I'm having a rough week, but you just have to keep going. No word from Sandie lately? Hope you are ok. How's everyone else? Have a good weekend all. Gary. |
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To be honest, I don't even know where to begin. I suffer from vertigo type dizziness and have done since February 2009. I don't know why, I don't know what caused it and I don't recall having a viral infection or anything. The only thing that I do know is that I was going through a stressful time and had people tell me "oh it's just stress" but I didn't think it was. My ex-husband and I had decided to call it quits, I was having a tough time at work and looking at moving out of our home although the vertigo actually started before we made our decision to separate. My first visit was to a walk-in clinic so stated I had vertigo, if it didn't go away in 2 weeks then to go and see ENT. It went away so I didn't. Then it came back about four weeks later so I went to see my ENT. He ordered an MRI which I did and that came back normal. He wanted to rule out MS etc. He didn't have an answer for my vertigo and firstly suggested I take some PT to see if it was BPPV. I did that but the PT said that my symptoms did not relate to BPPV so PT was pretty pointless. Next stop was neurology. They did some tests in the office and then ordered an MRI of the cervical spine (to see if it was cervical vertigo) and an MRA of the neck and head to rule out any injury where I might have a nerve that was being agitated. They both came back normal. In the meantime, the pressure had been building up in my head, especially around the front and I was getting more sensitivity to noises and light so I had gone back to ENT and they had ordered a CT scan. This came back stating that I had sinusitis of the maxiallary sinsues, but my ENT doctor felt it wasn't severe enough to be causing the vertigo. All other tests such as hearing tests etc. all came back normal. Unfortunately, and this is around September 2009 I got sick with bronchitis followed by strep and was on antibiotics so long I got a yeast infection. At this time my vertigo was at its worse. On a personal note, I had moved out of my home into an apartment, was now a single mum (mom) to a 2 yr old and 4 yr old but was happy to be there. I also had started a new relationship which I am still in now to a truly wonderful man. He has been very patient and understanding, although he recognizes that he doesn't truly understand how I feel. However, because of this relationship, I had traveled a lot in 2009 on planes and when I was coming back to Chicago in September from Baltimore and I had my bronchitis, the pain I felt in my head and my ears was totally unbearable. My ears took a long time to clear from that flight. Along with my vertigo issues, I also suffered from aches and pains including some severe back issues at the beginning of 2010. I have since then been diagnosed with Fibromyalgia for which I take some medication at night and it has been very helpful. Ironically, while this took heights between December and January, my vertigo almost completely subsided in November 2009. I had a couple of spells but I stopped waking up in the morning feeling OK for about 30 minutes before suffering with vertigo for the rest of the day to only having a couple of spells between November 2009 and March 2010. Just three weeks ago, the constant vertigo symptoms have returned and today I feel the worse. For the first time the other night, I went to bed with nausea, and had a restless night sleeping feeling dizzy all night and thinking about it to the point that I woke up this morning with the nausea still. I still went to work, and the nausea subsided but returned in the afternoon and the vertigo was still with me at full force effect all day. As my vertigo symptoms started up again, and upon talking to my Rheumotologist, I discovered (unbeknown to me) that my ENT had suggested if my vertigo symptoms continue to go and visit a particular doctor who is a neurotologist. I have an appointment with him on May 6 and am hoping that he might find the root cause of my vertigo. Upon reading another site I can pretty much say that I have 90% of the symptoms that were listed and am wondering if labyrinthitis is the cause of my issues. I guess I will find out when I have my visit on May 6. What really confuses me is that my daily vertigo disappeared in November and then made a comeback three weeks ago. While I can accept I am stressed, I do not accept that as a diagnosis. I have been more stressed before in my life and this has never happened before. Have thought about allergies but nothing is working on that level either. I worry about people thinking I am going crazy and mad given I look perfectly fine to others, but inside I am a mess. I cannot play enough with my two little boys before I start to feel icky again and that is very upsetting too. I also worry that if this gets progressively worse instead of better, my work life will be affected, something, just like most people, I cannot afford to have happen. If anyone has any similar stories, I would love to hear all about them. Thanks for reading my lengthy explanation. |
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Hi folks: Happy Sunday. Just thought I would give an update. I'm just starting week 11 of what I now believe (and my ENT diagnosed me with) is Labs. Yesterday, my wife and I took our 2 year old and infant daughter into Boston to meet some friends at the children's museum. I was a bit nervous as in the previous weeks, my "problem" environments are ones where there is a lot going on. People, cars, crowds, etc, and also ones where you are inside and have to look at lots of things. So I was a bit anxious. I have to say that I was absolutely fine. Not 100%, but probably 95%. My biggest complaints today are my vision (i.e. fishbowl) and feeling heavy at times. I had no issues yesterday except for maybe a few seconds. We even went out to a very loud, busy restaurant for lunch and I had a beer. It was great. I had a blast with the family and it gave me hope that I am indeed recovering. Now if my ears would stop feeling so full and if the tinnitus would only go away. Of course, today I'm not doing as well. Things are very fishbowly and I'm tired. I refused to originally think I had labs because mine arrived over the course of 4 weeks and I didn't really ever have the bad vertigo. Most of my problems after hitting "rock bottom" of dizziness and imbalance for 1-2 weeks were primarily visual and the doc said it couldn't be the Labs. So I was wondering how many of you long time sufferers also have the following: - Vision: See "light patches" in vision at times, like you've just stared at a light bulb (but much fainter) -Vision: LIght flashes when closing you eyes -Vision: Floaters -Vision: "Shimmering" vision when looking at things like the landscape -Vision: Shimmering when looking at certain patters. For example, if I stare at the gravel in my back yard (thousands of small rocks) I notice my periphery squiggles a bit. -Vision: Difficulty with some mirrors. I noticed this when I got my haircut. They have mirrors facing each other and it was bothersome. -Vision: Diffuculty looking through glass (i.e. through windows.) -Body temp: I often get very chilly in the morning and have to crank the heat in my car / office. - Sweating: Sometimes I sweat profusely in the morning I have to recognize I have gotten better. A month ago I was much worse and pretty much had to sit down constantly. Now I can be up, moving around without problems. Balance is better, but I still get the fishbowl vision at times and feel heavy at times. Ears still ring and are full. Tried claritin D for the first time today. Have to fly to SFO on Tuesday...it will be my first flight since early March. I"m a bit concerned as I hit rock bottom 3 days after the last flight I had...but I have to remember I was really dizzy going into that flight, whereas now I am not. I have to say, there are some great posts on Youtube from Labs suffers. There is a Canadian guy whose story is similar to mine, who fully recovered after 4 months. And his biggest issue 2 months in was vision, like mine. So there is hope. Keep on keeping on. Brad |
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Ugh, today is horrible, feel like I've totally relapsed. Nausea, sensitivity to sounds, tiredness, weakness, all back with a bang to go along with the intense brain fog. When will this ever end? :( Wednesday and the trip to see the neurologist can't come quick enough. |
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Hi All, So many of you has relapses.I did think yesterday while sat watching the kids on the beach that my ears were blocking and i felt like i was beginning to sway but nothing to report as yet!!! 3 months claerish and counting...this is the longest i have felt good since this labs started in april 2006 so please have hope all of you that there is light at the end of the tunnell.Althoughi know it could hit me agin at anytime but i hope it dosent. Avoid stress if you can and focus on something, i find it helps alot ans tsress definatly contributes i think. Natalie..hope the above comment helps you and hope you are feeling better. Gary..hope you are feeling better tonight. Gloria..you ok? Brad.. welcome and congratulations on your new arrival.. To all you new posters...this site has been wonderful for me to talk about my labs and symptoms so welcome to you all and hope it helps you all get through the hard times like it has me. Many time i thought i was just going mad but we all have the same symptoms and my mind was eased hope you all feel the same . Love Penny xx |
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on April 25, 2010 10:34 PM
Today has not been so bad except for the front of my head. Dizziness still very much there, but calmer. I ended up going to doctors a few days ago complaining of the pressure around my forehead and they gave me antibiotics for sinus infection, which is not uncommon with me although I am not suffering from the classic symptoms. The one thing that is bothering me the most is the pressure at the front of my head, across the top of my eyes, down my nose and occasionally under my eyes, which are all classic symptoms of sinus problems. This also may account why my vertigo/dizziness felt so bad mid-end of last week because of the sinus infection, even though it has been quite present for more than three weeks. I have never had the nausea before last week, so that might be why. Who knows! Just guessing and until my neurotologist appointment in just over a week, I am not going to know any better. Thanks for the comments and hope everyone is feeling better. Got to run, so to speak, to stop my 2 and 4 year old from doing some damage to each other. :-) |
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Brad, Welcome and congratulations on the birth of your baby. Oh my God! As I was reading your original post, all I could think was, that is exactly what I went through at the onset of my labs. Last May I severly pulled a muscle in my neck at the gym. I was in so much pain daily from it. I decided to go to the chiro. BIG BIG HUGE mistake!!!!! He adjusted me and that night the bed was spinning when I went to sleep. From that moment on I have not been the same. Apart from the initial bed spinning, I have never had true vertigo. I went to the ER twice, I am on Zoloft, I too sought council from a therapist, I cried and cried to my husband, I too went into Target and almost threw up on the floor. Your post struck a cord with me. I did a lot of research on upper cervical vertigo. I believe truly that the chiro adjustments that I had threw something out of wack and therefore threw my vestibular system off. I do have good news for you. I feel 100% normal 98% of the time. I have recovered. I went to vestibular rehab therapy over the fall and winter. Get in VRT ASAP!!!! It was my saving grace. You will recover and it will be a battle. Don't fight it, just go with the flow of it all. There are ups and downs with labs. It is awful. You can feel great and fine for days and then bam! You get hit again with symptoms. As for flying. We just flew to Florida. My ENT suggested that I put the wax that swimmers use to plug up their ears into my ears upon take off and landing. It prevented my eustation tubes from feeling and pressure. It worked! I felt nothing and was fine. I actually kept them in the whole flight because I was scared. Keep the faith Brad, you will get through this. Gloria, the party went well. The girls went to sleep at midnight and woke up at six am! On to the next event. Meaghan's first communion is Sunday. I'm having 50 people at my house! AHHH!!! I am now going to read the rest of everyone's posts and comment tomorrow. |
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Brad, After reading your later posts, yes to all of the above eye issues. I have floaters now, never had them in my life before this. I do have the weird light sometimes when I look at things. Patterns made me ill back when this all hit me. They don't bother me as much. Some lighting in big dept stores bother me. In the beginning I took to wearing a baseball hat and sunglasses just to go shopping. It did help. Now when I go into a store, I have a bit of an off feeling and then my brain seems to adjust and I am fine. Remember don't over do it. I know I have a tendency to over do things when I am feeling better. If you have a busy day, take the next day to try to rest a bit. Natlie, welcome to the site. The Sharp Blue Crew is amazing. It is so nice to have people that understand fully what you are going through. Gloria I hope you are feeling better. Thx about pic, I love yours too. I guess a vaca will relax you enough to take a great photo. Melissa Melissa Melissa |
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Hi all, Welcome Natalie - you too have had a tough time. This site is a huge comfort and you are with friends who are suffering the same issues and understand. Hope you have success with your neurotologist appointment coming up. Gary - you and I must have caught the same virus!!!!! Weird how my relapse is very similar. The nausea, brain pressure, fog, odd vision etc etc - like 6 months ago! This has really got me down - how are you coping with it all Gary? Brad - your vision symptoms you describe again like mine. The light patches as if you have been staring at a bulb I have noticed are quite prominent again - mine are light blue strips that appear momentarily when I stare at something/ floaters and spots. Things 'shake' when I look at them. You will find that after a hectic day, the next is nearly always not so good. Melissa/Penny - you are both right about not trying to get too stressed or tired, but when you feel a bit better it is natural to want to do more. I, to my detriment have found that out lately. Am sure this relapse is because I was determined not to let this thing beat me and carry on as normal, doing way too much, dashing here and there. Yesterday, visited friends - don't know how I managed as I felt so sick. Did it though, but was so upset because just can't enjoy things as you should, normally. The small glass of wine I had back a few weeks ago was a distant memory - couldn't face that at the moment. One day maybe. Melissa and Penny - great to hear from you. You give us hope that things will improve. Take care all Hugs, Gloria x |
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Thanks Melissa: How do I get a VRT therapist? My ENT was pretty dismissive and told me I could expect a "full recovery" and sent me on my way. He couldn't have cared less. Melissa: When you say you are 98%-100% do you still have visual symptoms? what about ear symptoms? I have fullness and ringing. I hate it, but could deal with it if the vision / balance clears up. Saturday was amazing but I pushed it. Vision is now worse than it has been for 3 weeks. Arrgh. Go to my Chiro today for upper cervial alignment using Axis Orthogonal. |
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Hi everyone I am off work this week but dont feel brilliant today. I have headache and very tired. I think the hayfever season is making me feel worse. I have a bit of toothache too so off to the dentist later. I havent been for a year due to labs so I hope I dont need to have lots of work done! Brad and Natalie welcome to the site. Good luck with your appts and hope you get some answers. brad all ents seem to have this dismissive attitude it seems to go with the territory. Once you have had the balance tests you could ask to be referred for VRT but I have heard that some doctors only do this after a certain amount of time has passed because they just assume you will get better yourself at first. Melissa sounds as though you are managing lots of things and I am pleased you are pretty much over this now. Gloria and Gary sorry to hear you havent been too good recently. You were very brave cooking for friends gloria - I couldnt face that. I did visit my family yesterday, it wasnt too bad but I did feel quite off at times and pretty tired. oh to be normal again! Anyway onwards an upwards, we hope! Take care xx |
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One more comment....I wonder how many of us have had this entire thing kick off with Chiropractic manipulation or some sort of neck / jaw issue? Melissa, you stated yours did. I had some symptoms pre Chiro, but then it was a whole new world with 24/7 symptoms afterwards. Is there a link? I also went to youtube and searched for Labyrinthitis and found a 10 min or so video from a canadian guy who also had a pinched cranial nerve. Guess what...his whole ordeal also started after a Chiropractic visit. Coincidence? I think this same guy posted on page 8 of this website as Neil. His primary symtpoms are visual as well. The good news is, he recovered fully after 4 months (he has an updated video link.) Today is bad. Bad bad bad...worst I've felt in 3 weeks. I"m supposed to fly to the west coast tomorrow buy may have to cancel. Don't want to be out there and have it get worse. I'm so worried this will have a negative impact on my job. I do like my job, but it requires travel about 50% of the time and I just am not up to that right now. Praying it is just the weather or perhaps the Claritin D I took yesterday. I won't try that again. B |
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Brad, I live in NJ and we have Kessler Rehab Centers all over. I called the main number and asked for a Vestibular Rehab specialist in my area. They put me through to a local branch and viola...I had the most amazing VRT therapist. She worked on deep tissue massage on my neck and gave me a bunch of VRT exercises to do. Also, she helped me strengthen my neck muscles. Google Vestibular Rehab in the Boston area and you should be able to find someone. I need a referal, so I called my GP and she wrote it right away. I basically cut my ENT right out of the picture. I haven't been back to her since the onset of this mess. I'm 100% better 98% or the time, I mean that every once in a while I will experience symptoms. I notice that if I fatigue myself, if I'm getting sick, I will feel some symptoms. It is not bad and never as bad as a year ago. I also know what to do to eliminate the symptoms. After I got over the first 4 months of hell, I was left with a feeling that I was walking on a funhouse floor. Like when you get out of the funhouse or off a ride and you still feel like you are on or in it. My GP explained that fluid retains in my ears and that leaves me feeling a little off. So if I feel that feeling, I always take an antihistamine and I take hydroclorathizide for about 10 days. It is a diuretic and it just helps to flush the fluid from my ears. I would never go to a chiro to treat this. I truly believe that they make it way worse. If you feel that the chiro is helping, then that is great. I just think they can mess around with nerves in the greater occiputal area of your neck and you don't want anything to mess with that area. I had an MRI of my neck and it showed I had three bulging discs in my neck. They were pushing on the nerves that control balance. It took 5 months of PT to help get that back under control. Good luck with everything. You can email me directly if you want thelttleman@msn.com (no i in little). Melissa |
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Hi everyone Just popping in to say hello! Sorry to see most of you are still here. Gary, sorry to see also that you are having a relapse. This is the way I go - relapse - takes months to feeling better - relapse again!! Nightmare. How's your little dog? Just flitted through the postings but how are you all? And, all you new posters - you've come to the right place - this website was a great comfort to me when I first got VN - when I thought I was dying! Well it's hayfever season in the UK - yeah, what fun. I'm not to bad with it at the moment but my son is suffering already! Bad news for us though as it all affects our ears - all connected. I have been quite good lately with the balance and dizziness - can't really complain too much though it is still with me. It's been 8/9 months since I packed my job in and I can honestly say it has helped and I do feel a lot better not having to go into work - it's a vicious circle. I notice Katie popped in - so if you are reading this Katie - I hope you are well and still feeling good! Anyway, hope you all have better days. Sandie xx |
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Hi guys: Boy I'm having an ugly day. Ears are very full and ringing, jaw hurts, and dizzy with fishbowl. I was doing so well. I keep waivering back and forth as to whether htis is really Labs or TMJ. I certainly have all /most of the symptoms you all describe. The vision, ear fullness, ear ringing in both ears. But then again, my ENG, ECoG, and ABR came back normal. My hearing was normal. My ENT did say he thought it was labs. But...my jaw is still sore and bite seems off after the Chiro manipulation that helped kick this whole thing off. I'm getting it treated at Tufts in Boston but it is still sore. And my ears always feel more full after eating. (when I'm chewing.) Concidence? I just want to get to the root of the problem so I can fix it as quickly as possible. I'm checking into VRT. Thanks again (especially Melissa for the emails) Brad |
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Hi all, Sandie -great to hear from you! Glad all is well at your end. As you can see I'm still around and am yet to get some light at the end of my tunnel! Well, it has only been 10 months after all - aaarrrgghhh!!!!!! You are right about not having to go into work helps. Thank goodness I gave up my job. No way could I cope with that as well. I have huge admiration for those that do. Carry on keeping near symptom free - but do keep letting us know how you are. Can't not have 'our' Sandie around! Brad - sorry to hear you have gone back down the ladder. This is really like a game of snakes and ladders. Up one minute and down the next. Jemma - like you am having such tiredness and fatigue today. Could drop down and sleep on the spot. Hope you have a good week and feel better tomorrow. Gary - good luck with your neurologist tomorrow. Hope you get some answers. If he sheds any new light on this - do let us know! How many more relapses do we have to go before some degree of normality sets in?? That question is more complex than the Big Bang Theory LOL!!!!!!! Take care all Love & hugs, Gloria xx |
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Jemma, yes I have been so busy lately!! I just had my daughter's 8th birthday party. She had a sleepover with 8 girls!! This Sunday is her First Holy Communion. I am having 50 people at my house!! So I am running around like a chicken with my head cut off!! Gloria, hi!! How are you? I really think you need to get your neck worked on. You really need a deep tissue massage. I know, I know it isn't reality, but hey maybe... Brad, no problem! Melissa |
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I think my last message got lost somewhere along the line, but anyway... The last week for me has been the best yet - Not perfect, and still some "wobbly" moments, and my vision is still off most of the time, but it was the longest period I've had of feeling close to normality yet. Unfortunately today isn't looking quite so good thus far, but I'm just trying to stay relaxed and let it pass while I carry on as normal. Still, this feels like progress all things considered!! |
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Hi folks: Just thought I'd post an update. Having a "blah" day. I'm not terrible, but not well either. Is it hte weather (cold, rainy, and grey.) I had to cancel my trip to the west coast. I hope I didn't make a "CLM" as we say in the states (Career Limiting Move.) I've had to let my boss, and the big buys / HR know that I"m going trough something, most likely Labs, and that it will take time. I am a long time 10 year employee with a good track record so I pray they have patience with me. I'm the primary breadwinner for my family so the though to losing a job I like and need is a bit concerning. I have to travel 50+% of the time with my job (a lot international) and the idea of doing that while I"m feeling like this is really not somethink I want to do. I got really bad after my last flight in early March. I have noticed that I seem to feel better in the evenings (around 6-9 PM) but worse in the mornings. In the mornings, my ears feel clearer and ring less, but I notice I am hot, sweaty, and have the chills a lot. This usually coincides with a BM (sorry if TMI.) By mid-morning I"m usually better. Does anyone else have this? Chills / sweaty in the am? I also notice that if I "wiggle my ears" (I can do this) by ear drums feel weird and crackle a lot. THanks for the continued support through this. |
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Brad - I admire you for trying to keep going with your job while dealing with labs. I would never be able to do that. It does put a lot of stress on you being the primary breadwinner. I used to also always feel worse in the mornings, but would perk up a few hours later. Even now with me feeling a lot better, mornings are still a bit more of a struggle. As for the chills and sweats I also had those quite bad for the first 2 months and later they would gradually subside. And definitely with a bm I'd have them along with cramping (also sorry for tmi). Since I didn't have the full blown dizziness, I really wondered if this was labs or not. Gloria and Jemma - I can relate to you with the tiredness and fatigue. It's amazing how we still always carry on and move forward. This weekend we went to our cottage in the Gulf Islands which requires a 1 1/2 hour ferry ride. The seas were calm, but any little movement really set my balance off. I was fine after we got off. And while boating on our little 12 ft. boat, I was fine. I never would have been able to do this 6 months ago. Since I was more active this weekend and doing a lot of lifting, I'm definitely more fatigued. I can't complain though, my symptoms are so much less severe. Gloria what are the other VRT exercises you do with your head. You mentioned something about focusing on an object and shaking your head. I've been doing the heel to toe ones twice daily and I think they help with the vertigo. Have a good day everyone. |
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Hi All, Just an update: Went back to the hospital to see the Consultant I should have seen. This man actually looked at me and seemed interested in my symptoms. When I said I still had some head shaking dizziness he said, like the other one did, that it sounded like BPPV. I again told him I did not think it was as I didn't get spinning vertigo. He took me in another room and said he was going to try to make me dizzy, did the laying down, head turning manoeuvre and guess what .. didn't get dizzy but had a big head rush when sitting back up. He is now going to send me for a MRI - I do feel this is all too late as I am improving and I am having mostly good days lately, in fact, apart from today, I have been good for the past couple of weeks, with just the occassional off moment. I told the doc about the visual dizziness and he seemed completely confused like he hadn't heard of it before. I think when we get over this we should make the country more aware of this condition - maybe we should all run the London Marathon next year - HA HA Brad - I have suffered the sweats too, especially in the early days. I am also still suffering with the ear fullness and ear pain. Suprisingly when I had the pressure test on my ears last week they said it was normal - hard to believe when you feel your head is literally being swashed. Susanne - I cant believe you went on a boat - good on you. I found that the VRT has made me come on leaps and bounds. My head shaking and turning symptoms have definately improved and I notice that I can now bend down and pick things up which I couldnt do before and even leaning over the bathroom sink when cleaning my teeth is now something I can do without even thinking it will make me dizzy. It will get better. Gloria - so sorry you are back with the dizzies, I feel for you and hope it passes real soon. Sandie and Melissa - so happy to hear you are both doing great, you give me so much hope that I will be symptom free one day. Jemma - hope you got on ok at the dentist. Gary - Hope your visit with the neurologist goes ok. Be interested to know the outcome. Andy - We seem to mirror each other, I have been good for a good couple of weeks but today woke up not feeling so good. I'm wondering if its hayfever, something I've never suffered with before but my ears feel so full today. Hope you feel better tomorrow. Take care everyone Shirley |
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Hi folks: So...I just checked out thedizzylounge.com I'm not sure if I'm a fan of that site. Everyone on it is chronically dizzy. I have not found a single case where people have had 100% recovery. I never thought I would say this..but I actually HOPE what I have is Labs as at least there is then a CHANCE of a full recovery. Everyone on dizzylounge has MAV, Menieres, etc and is pretty much stuck with it. The only thing that is keeping me going right now is the hope this WILL pass even though it may take a while. People like Melissa and others I have found ahve very simlar stories with dizziness starting after a Chiro visit and ALL have made a complete recovery. Again..the only doubt I have is I had a "slow decline" into this rather than the acute, violent vertigo one day. I can drive, run, do yoga, etc. My balance is actually okay. It is my FISHBOWL VISION, ringing, and fullness that drives me NUTS! Have any of you ever checked out www.thedizzylounge.com? It makes me too stressed out. I need to hear success stories to get me through. Cheers, Brad |
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BTW...here is the link to the youtube video on Lab's that describes me a lot. This guy recovered 100% in 4 months. http://www.youtube.com/watch?v=3SFCemH_LGg |
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Shirley, you will get better someday and I'm glad to be here to support everyone through this crap! I found this website 4 months into my labs and it was wonderful to have a place where everyone felt the same as me. Brad, from 4 weeks after I was diagnosed with labs, I was jogging everyday and swimming. I had no problem exercising, but then I would sit still and feel like crap!! I also felt like I was rocking on a boat for a good 3 months. At month 4 it felt like I was taking off in an airplane or leaning backwards. Very weird and very scary! That all subsided thank GOD!! Stop looking at all the scary websites. Stick to this and the Emma Ilia website. Much more positive. You'll drive yourself crazy reading that stuff. I could drive, run and do yoga. I too have two children under the age of 10. They run me ragged. My best friend had to take care of them for me during the day for 3 months and my husband took over all the domestic duties at night. That was for 4 months. By the 4th month I really started to see a small turn around. Not without it's bumps though. One day great, the next horrible, but one day is better than no days. Oh and rainy days were the worst for me! Also, when it was hot and humid, really bad. Still today if it is raining, I get a slight bit swirly headed. Gloria, Jemma how are you ladies? Today I was a bit swirly headed. It has rained her now for 3 days and I am running around like a chicken with my head cut off. So maybe I need to take a breather and relax. LOL Hope you are all having better days. Melissa:)
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Hey - for the girl who had uveitis and then Labyrinthitis. I had essentially the same thing - was diagnosed with uveitis in my right eye and then after a few months the Labyrinthitis thing came up. I don't know if they are related but I had all the same tests as you with no auto-immune issues coming up! I can't help feeling it's all related somehow. |
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Brad - my mornings have always been the worst for me. Takes me to midday to get it together, reasonable in the afternoon and early evening but back to being rough by bedtime. As for reading other web-sites, it does make you think OMG this will be forever. Whilst not the quickest of things to get over, you do find you manage to live your life, perhaps sometimes not quite at the 100% we all come to expect and then have rough patches where you lose all faith. My neurologist told me it is not a life sentence and by 2 years it will have gone. Now, I know you think 2 YEARS, but that is worst case scenario. Already you are making progress and you are only at 2-3 months? I couldn't really even get out of bed at that stage! Try to be positive Brad - when you don't feel so positive - then vent your frustrations out on here - we give each other our support. Shirley - lovely to hear from you. Glad that you have had a better time recently, although just when you think you have it cracked - back down the ladder. Hopefully, not as bad though? Andy - hope your week has picked up after a little blip? Have you booked your cinema trips yet? Melissa - doing great - think you have this in the bag now? Thinking of you and all your preparations for your daughter's communion this week-end. Remember - don't overdo it. I'm the same though. Everything has to be just right especially for a special occasion. Want to see a pic of her in her dress - bet she will look fabulous. Susanne - bet you didn't think you would be doing sailing and all a couple of months or so ago? My VRT exercises other than heel to toe are putting a piece of blue-tack (don't know if that's what you call it in Canada) or a sticky paper with a cross on it. Place it at eye level and walk back from it by about 9-12ft and then keep walking up to it, in focus all the time and then backwards, focusing all the time but shaking head side to side for a minute or 2 if you can manage it. 1 minute is more than enough for me. Then the same but shaking head up and down. Afterwards, stand and gaze in the distance, focusing on an object, feet one in front of the other and stand gaze for a minute then eyes closed for as long as you can. Me - a bit better than I have been, but I get peculiar zingy pains in my head when I get a rough patch. Keep telling myself patience is a virtue!! Take care all, Hugs, Gloria xx |
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Hello all Just back from the neurologist and it's mixed news. He thinks the ear and brain things are separate, but he also thinks it's the tumour that could be causing my memory loss. It hasn't grown any since the last scan, but he thinks it could be pressing down on an area called the fornix, and he's to discuss with the other surgeons in a few weeks whether it's worth the risk to operate and remove it. Now I know from reading your posts on here that other people have complained of memory loss so I'm really confused; is it the inner ear damage or the other thing that's causing it? He's also referred me to a different ENT than the one I saw first of all, hopefully that guy will have some answers but I won't hold my breath. All I know is something has to be done, this last week has been a throw back to the start of it all last year and I'm sick of it. Sorry for the rant. Gary. |
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Hi folks: Just thought I would post my update. Thansk for all of the comments and feedback! Gary...sorry to hear of your news. They found something on my brain MRI as well. It was a "suggestion of bilateral cortical atrophy of my parietal lobes." This could be basically a type of fatal dimentia or alzheimers, yet I'm only 35. I think I"m probably okay, but I have to have an EEG on Friday an Brain Spect on Monday to rule it out. I am supposed to only sleep for 4 hours the night before the EEG. Joy for me. Today I'm still "blah." I guess a little better than yesterday. I still struggle as to whether or not this is Labs. I think it is. But I still have doubts. I never had the bad vertigo thing. In fact, compared to most people my issues were pretty mild. I started with mild "drunk" feelings that would come and go. Then I thought I couldn't see things out of my right eye too well...it was like it wasn't working even though it was. Then I noticed I was dizzy putting on safety glasses and walking around the factory. Then I went to the Chiro and had 5 good days, went back and came out worse like this. Tinnitus, ear fullness, started 10 days later. I did have a brief head cold for 5 days in the middle of this. It didn't kick if off though. Here is why I think it could be labs: -I had some vision / dizziness before the Chiro (although not as bad) -I definitely had periods of rocking early on (post Chiro)...about the week of March 3. -I got new glasses with a stonger prescription on 3/31. Boy did that make my world look worse. I remember making Pizza with my daughter that night. Looking down at the counter putting the cheese on it was as if the entire counter was slanting down and to the right. This has been the only time I've felt "sideways" and attributed it mainly to the new Rx for glasses. I dilligently have worn the glasses since then and they are now much better. -I had "normal" ABR, ECoG, and ENG with a 17% weakness in left ear and right ear eustacian tube disfuction. However, I distinctly remember NOT getting dizzy during the caloric test in my left ear, whereas I DID get dizzy in the right ear. Even though both of my ears ring and feel full, the left ear tends to ring more loudly and has caused me more problems through this. -Sometimes when pushing a stroller or shopping cart it seems like I'm going to go to 1 side. -My problem motion appears to be when I look down at the ground when doing some activity. Example: Raking the yard. I tried this about 4 weeks ago and it was really weird. Everything looked off like a fishbowl. I'm starting week 11. I hope to have a recovery in a few weeks, (tomorrow is fine:)) I have to say in the last week, being in a store is not as bad. I pushed the shopping cart last weekend and it was fine. Not great, but not terrible. I tried raking at it was okay. Not great, but not as bad as before. What gives me hope for a complete recovery: -I didn't have this as badly in the beginning as some of you. Sorry...not trying to be insensitive. I have no idea how some of you managed with 24-7 bedspins or being laid up for months. I have always been able to drive and walk, although unsteady at times even when this got really bad. -5-6 weeks in I did notice an improvement and things are better, although not yet great. (Although Saturday was GREAT.) What concerns me still: -Tinnitus won't go away, although it seems (fingers crossed) quieter the last few days -Heavy feet / mashmallow feet, particularly in parking garages. -Fishbowl vision where the periperhy can shimmer when looking at busy patterns. -When I turn my head to the left, I notice my tinnitus in my left ear gets louder when I"m at the extreme end of my turn. -When I turn my head back and forth ("no" motion) I can feel them pulling on my ear drums. -Ear drums are sensitive. Pulling on my ear lobes is uncomfortable. -When staring at an object on a wall and making a "no" motion, I notice I get bright patches in my right eye at certain head positions. These are not flashes, but are more like faint blotches as if staring at a bulb (but fainter.) Again...I have to keep telling myself I have made improvements. I can now watch TV and no longer need to sit down every 5 mintues. But I still feel as if I've been "robbed" of me and am very worried about losing the job I like and need for my family. I am on week 6 of Prozac and have just learned it can cause tinnitus and may be ototoxic. Great! I also notice I am less "fishbowly" without my new glasses. But when I don't wear them then I notice more "Bright patches." Damned if I do or don't, it seems. Thanks for the continued support. I again visited the dizzylounge and don't like to hear stories of people who continue to relapse and never recover. I love to go back to page 2-8 of this website and notice how even the worst people, like Anna, are no longer here (meaning they are better.) Gives me hope!! THanks! Cheers, Brad |
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Brad mate don't keep doing it to yourself by visiting the dizzylounge if it is going to make you worry more. Personally I haven't been on there and really don't want to. I need people around me to be supportive and positive that I will get over this thing and I know I will but it will take time. I have had this for nearly 6 months now, when I first got it I spent 8 weeks on the sofa unable to move. I couldn't stand even long enough to make myself a cup of tea and going to the loo and taking a shower were so scary that I took my mobile phone everywhere just in case I collapsed and couldn't get up again. Even laying on the sofa was difficult as I could not get my head in a position whereby I was not dizzy. I slept propped up with a pillow wedged at the side of my head so that it wouldn't move, otherwise I would wake up too dizzy to get back to sleep. I remember those days as being the scariest I have ever had. And going with the memory thing, I can't even remember much about christmas, its all so much of a blur. I suffered so much with anxiety, did so much crying, just look back at earlier posts, I even wanted to end my life. Now I am so much better, I have started driving again, am dizzy free most days, can cook, clean and even mow and weed my garden. All I need now is to sort out the vision thing and I will be there. Keep the faith and stop looking at anything that will cause you anxiety because since I have been more positive, my condition has definately improved. Wow: A few months ago I definately wouldn't have thought I would be saying any of that. Take care everyone Shirley |
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Gary - sorry to hear that you have not got a definitive answer. When you say 'memory loss' - what do you mean? Is it that you totally forget things or you have memory lapses? Certainly, I can relate to memory lapses. Going into another room for something only 3 steps away and forgetting what I had gone in there for as an example. This happens to me loads of times throughout the day - or if I am mid-sentence I forget what I was going to say. This has only happened since labs. Did the neurologist say that all of your brain fog, labs symptoms, nausea etc. would be caused by the tumour? Our symptoms sound similar and I, too over the last couple of weeks have gone back to how I felt at the beginning of all this and my MRI scan was normal - so, for me Gary I still think you have had labs and maybe the tumour has exacerbated your symptoms. Pretty much what my neurologist said that being a migraine sufferer gave me additional symptoms and would take longer to clear as I had 2 things going on! It is exhausting having to trawl for a clear answer from someone. I would love to hear from all these professional people that I have been paying money to over the last few months, to give me a more concise answer as to why we get these odd symptoms as it is difficult to believe that an inner ear virus causes so much odd, weird stuff. Try to keep strong Gary and rant away if it helps a little. Big hug x. Brad - ALL of what you describe and have described in your posts is everything that we have all experienced/experience, myself included. Tinnitus does diminish, but likewise it 'changes' frequency, if that makes sense, when I turn my head! All the visual stuff, as I said in my last post I still have. Again,that changes over time. You need to remember that this is not a linear recovery - you have symptoms that fade, you have a good patch, you have symptoms return that you thought had gone away, but they are not so bad as before. You then go down hill again, maybe new symptoms appear - for me it was muscle spasms in my head, neck and shoulders. You come back up again, quicker than before. So, what happens is you peak and trough until it fades and goes away. Also, I spent a fortune on changing my glasses. Before, I had what we call varifocal glasses - both long and near-sighted lenses in one. I now have to have two separate glasses. One for distance and one for reading because my brain could not cope with the varifocals. To wear them caused me to be more dizzy and off balance. Brad - cope with the 'now', take each day as it comes. My friend sent me an email with 45 lessons of life (I listed these before in a much earlier post). I'm not into a lot of slushy sentiment, but I do have to say a few of the sayings were quite pertinent - so I'll list them and hope they may give some comfort. 1) Whatever doesn't kill you really makes you stronger. 2) Frame every so called disaster with these words - in 5 years time will this matter? 3) Time heals almost everything - give time, time. 4) However bad a situation is - it will change. 5) Believe in miracles. 6) If we threw our problems in a pile and saw everyone elses - we'd grab ours back. 7) No matter how you feel - get up, dress up, and show up. 8) The best is yet to come! So - we will get over this, this too shall pass and we will become stronger - it may take a little while but we will get there! Good-night all Love & hugs, Gloria x |
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Kudos to you Gloria!!! I love those sayings, so true! I think all of us "old timers" on here, would agree that we have all improved over time. Well said Shirley! You are so much better and coping with this. By the way, I saw your friend request on FB and deleted by accident. All these people send me farmville requests and I hate them! I thought that is what your friend request was. LOL Brad, you are much better and I do think you have labs. Most likely from the chiro. You had exactly what happened to me happen after the chiro. Keep the faith Melissa |
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Hi all Melissa and Brad - I was reading an article about cervical vertigo and chiro and they tend to agree with what you say, stay away, it can lead to bad things such as artery damage, have a read for yourselves. Physical therapy seems to be the way to go, it's less brutal and forceful. http://www.dizziness-and-balance.com/disorders/central/cervical/cervical.html Having spoken to my family and some friends, and had a sleep on things, I'll probably not bother with surgery unless all else fails. They are no neurotologists in this country, so maybe a trip to London to see Dr. Luxon or the other person that was mentioned on here is on the cards. I just want a definite diagnosis. Why is that so difficult to get? Gloria, I'm the same as you - it is memory lapses mostly that I have. Yesterday for example, before going to see the doctor I went upstairs to turn off the immersion. When i got to the top of the stairs I walked into the bathroom, washed my hands, and walked back downstairs, totally forgetting about the immersion :) It's absent mindedness alright and everyone gets this from time to time, but like you it wasn't there before all this. Other stuff like concentrating and remembering detail and stuff takes so much effort. That article that Jemma posted before is very good. It leads me to think that it is the ear that is causing it rather than the brain. http://www.backgroundfacts.com/menieres/COGDIS.htm Oh, and the Dr. did say he thinks the ear and lesion are not connected, so VRT should work, if I could keep at it consistently! Today my head around the scalp area feels really light and tingly, this has been the case the last couple of days, but the fog isn't too bad so that's a positive. Anyway thanks all for reading my moans and groans, this site is really a godsend and big thanks to Rich for keeping it running. Gary. |
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Hi all Gary and gloria - about the memory lapses you have. I do get this but it is fairly mild although I have to say that for me it was the very first sign of labs coming on. For a few weeks before all this started last March and April I kept getting these odd little memory blips. It was really weird I remember saying to my mum that my memory kept going momentarily. I would sometimes be mid sentence and forget what I was going to say or it would take me longer to mentally process something that someone said to me. I definitely noticed it and I remember looking up about the brain on the internet then next thing I knew I woke feeling dizzy and all the other stuff started and the rest is history. Gary I think Im with you on not having the surgery unless you really need it. I would be scared of making things worse because brain surgery is such a complex thing. I agree that the best thing to do would probably be to see a balance specialist for their opinion and then keep doing VRT for now. I went to a country house yesterday for the first time since this started. Walking round outside was ok, except my hayfever is really bad but inside in all those dark rooms, up and downstairs crooked corridors, my god I felt bad. Really off balance and weird visuals etc. I couldnt get out quick enough. Then again you have to keep testing yourself dont you. Brad I have been where you are, scouring every site for answers. Going over the symptoms again and again trying to find answers. I have kind of come to accept that I might not get a definitive answer to this now. I am convinced it is a vestibular problem, labs/VN I dont know exactly what but definitely inner ear related. I am now just focusing on each day, not expecting to see improvement each day but doing what I can and kind of accepting I have a sort of disability but hoping it improves with time. Also I would say that I did not have spinning vertigo and lots of people dont. This seems to make the doctors dismiss you and say it isnt labs but I dont think that is the case. I am sure, as with all illnesses, there are different variants and symptoms for different people and what you describe sounds like a vestibular disorder. Shirley you sound way more positive and so glad you are seeing dramatic improvement. It sounds as though you were really bad at first so I guess when you have been there any improvement is gratefully received. By the way for those who have tinnitus ie Gloria, Gary, Brad - is it like high pitched noises in your ear or is it more like the crunching sounds when you move your jaw? Take care everyone xx |
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Gary, What is an immersion? I'm so forgetful since this all happened to me. I am constantly running up and down the stairs and then completely forgetting what I went there for. I have to back track and then try hard to think about what I wanted in the first place. It's driving me nuts! I also keep forgetting important things. Like yesterday I had an appt at the dermotologist and completely forgot until late in the afternoon! I have my phone alert me now, or else forget it. Melissa |
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An immersion is what we use to heat the water in the tank for showers and baths or whatever, it saves on using oil or gas to do it. It's just a water heater really. |
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Hi folks: Thanks for the kind words of encouragement. I just get frustrated at times and bummed out that I'm 11 weeks in and still not "well." (although I am better.) Here is some news...I've been "thinking" that my tinnitus seems to be getting quieter and higher in pitch. Well, last night I woke up around 3 am to use the bathroom. Got back in bed...suddenly I realized everything was SILENT! At least I thought it was. I was thrilled! Of course, I then spent the next hour trying to "find" my tinnitus. I eventually did, but it was very very faint. I also noticed my pulse was way down...my pulse has been higher than normal since this started. That gave me hope. So..not sure if the tinnitus was truely gone or whether I was just ignoring it. But it made me feel better at least. Of course, when I awoke at 6 am (alarm set for 6:15) I could hear my tinnitus more and my pulse was faster. Probably because my body knew I had to get up and go to work rather than just sleep. Some anxiety there I guess. Today I'm feeling okay. Better than sunday / monday. My tinnitus is there a bit, but seems better than weeks ago. My vision is still fishbowly and I have heavy feet at times. But looking back at how I was mid-March, I am loads better. Tomorrow I go in for my EEG to check my brain for bad things (based on my MRI.) Not worried about the EEG as it is an easy, painless test. However...I am worried about only getting 4 hours of sleep tonite (required before the test.) That is going to kill me. Thanks, again, for all the support. Brad p.s. I found a guy "Cop" on page 4 back in 2005 who is pretty inspiring. He made a full recovery in 6 months. Good to know. |
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The last couple of days have been a bit odd for me, in that I haven't really had any feelings of vertigo or movement at all most of the time, but my visual symptoms have seemed worse than ever. On top of all that I just feel really, really tired, particularly today - I thought I'd slept okay but feel like I haven't slept at all. I think the increase in visual symptoms (even reading this page is tough, it's shimmering all over the place!) has ramped up my anxiety to be honest, even though I can see the positive side of the past couple of days I can't really feel it, and sat here at work this afternoon I actually feel a bit low. I'm pretty much at the six month mark now, and I really thought it would have been all over by now, but at times I'm still as scared and fed up as ever... Out of interest, have those of you who went onto anti-anxiety medication found that it helps you to stop thinking about your condition? I don't really have any physical anxiety symptoms any more, but I just can't seem to stop thinking about it a lot of the time. |
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I'm exactly the same with being forgetful. Like you Melissa I go to do something and then think "what have I come in here for". Also when I'm talking I sometimes can't remember what things are called, I know it at the start of the conversation but when I go to say it, it's just gone. |
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Hi Andy: I went on Prozac about 6 weeks ago. 20mg a day (started at 10 for first month). It definitely helps with the free floating anxiety / worry. I know Melissa is on something as well. My Dad actually was the one who pushed for the prozac as unbeknownst to me he has been on for 20 years. Not for depression, but because it helps mellow the spinning worry / anxiety / stress from his job. I recommend it. It has helped me. I wonder if the small improvements I have noticed since March 17 (when I started Prozac) are really me recovering...or are they the Prozac? I don't care, really. Good luck. |
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Well...I've done it again. What started as a good / great day has turned blah. I freaked myself out again looking at other sites and people who are unwell for 5 years. I've even branched off into the area of Thyroid. Could this be? I dunno. Most likely not. It is just the helplessness feeling kicking in and me trying to find the cause. Before this I always believed there was a definitive cause for everything. And now I am frustrated with medicine. Yes..I have most of the Labs symptoms. Yes..I am am better and am thankful for that. No...I have generally not gotten worse. Maybe down the rung a bit, but not worse and no new symptoms since my "rock bottom" March 8-25. Just so down...all I want to do is go home and hug my wife. I have been robbed of "me" and really miss "me." Went for a walk today at lunch. Felt pretty good. Vision pretty clear other than black floaters. Shimmering is not that bad. I see my regular DOC tomorrow after my ENG and will ask for an Rx to VRT. Sorry I'm so mental now. I was so "with it" before this and feel I have "lost it." |
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Don't worry about losing it Brad - we've all been there. I'm 15 months in at this stage and still have moments where it freaks me out. But the bad patches always ease and it will get better for you. Gary. |
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Andy H, I take 100mgs of Zoloft and YES it completely stopped the round about thinking pattern I was having. I couldn't stop obsessing over why or how I got labs. It worried me so much all the time. Now I don't give it a thought. Also, if a symptom pops up, I don't stress about it. I know that it will be okay. I also know that if I wasn't on the Zoloft, I would freak out at any tiny symptom that would pop up! LOL I really mean it. |
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Has anyone ever tried Cranial Osteopathy for Labyrinthitis? Google it...some interesting stuff. |
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Went to Lakeside yesterday (shopping mall) with my cousins and did ok. I thought I would have a lot of trouble with the lighting but I was surprisingly ok. I really hope this is now starting to pass. The only thing was I had a tremendous headache afterwards which did go once I took some painkillers. Does anyone else get this? |
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Hi Everyone: Shirley, headaches is actually something I DON't get :) Fortunately (knock on wood.) Does anyone here get ear pain? I know some have tinnitus and fullness. I have this too. But I also have ear pain occasionally. My eardrums sometimes hurt..not bad. But it's like I can feel them and when I pull on my ear lobes or rub my ear I get "clicks" in the ear, particularly the right one. I also notice that sometimes my ears feel "more full" after I eat / chew. Anyone else get this? This is why I start to waiver on is this TMJ or Labs? I know I do have TMJ issues and am getting them treated. I now wear a MORA splint from Tufts. Supposedly this keeps the joint stable and centered relieving pressure and muscle strain. So many of my symptoms are Labs-like. But I know ear pain isn't a typical labs symptom. And I have this from time to time so it gives me doubt. I guess it's good that I'm getting it treated. But I then get discouraged as it is a difficult thing to treat in general and I've read some reports that say MORA splints are not as good as others because you remove them to eat and then eating without it moves the jaw back to the bad position. And some TMJ people claim to have "brain fog" and "fishbowl vision." ARRRGGGHHH!!! I drive myself crazy with too much information. Okay..I do feel better than weeks ago. Even better than last week (more energy.) I hope it just isn't the Prozac. Very tired today. Only got 3 hours sleep prepping for my EEG today. It really magnifies your symptoms. Hoping / praying for continued recovery as I just want to be normal again. Thanks, everyone, for your support and comments. They make me feel better. |
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Also..one last thing. Does anyone's tinnitus change when you open your jaw wide? mine gets a lot louder and higher. Thanks. |
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Hi all, Well it was my turn to really freak out this morning. Was so light headed and floaty - I have had it. Cried buckets and buckets. Went to see my physio who thinks it is my neck again. She did some massaging (Brad - no manipulation). Like you Brad, when you may have other stuff going on - like your jaw - it mixes up with the labs thing as well. I have no doubt that I have labs - the way my symptoms came on after horrible chest infection and stomach bug and all the weird things you get are labs. But, I obviously have a neck thing going on which isn't helping. She was a bit more positive when she said she can do something about it in 3/4 sessions. Have come home, but still feel so off, I'm not so convinced about my neck. The last time I saw her was about 6 weeks ago - can't keep going , it costs too much. Why did she not pick it up then?! It's just you get pulled from pillar to post with different opinions all the time that leaves you in a complete confusion. Really want to find a hole and crawl in and stay there for a few years. Can't though - got my family coming over this week-end from Ireland (Castlebar, Gary) - so I have to pick myself up, dust myself off and get on with it. By the way Brad, I had horrible ear pain - that has worn off over time as has the fullness, but still have tinnitus although not so bad. Also have had Cranial Osteopathy over the years for my migraines. Worked for them, but not for this - for me it just aggravated the condition. Wish you all happy May Bank Holidays - thinking of you this week-end Melissa for your daughter's communion. Shirley - you ARE doing well! Go girl!! Andy - tiredness is such a big factor with this. I think it is because the brain is having to work extra hard plus the worry and anxiety we all suffer with this. The Citalopram the doctor gave me this week just made me feel very unwell after just 1 dose. So, I think I will ask to go back on the Amitriptyline - it helped calm me down although the symptoms were still there, but helped me cope. I came off of it because i was also given it to help with all the muscle spasm. It didn't do anything for that. So at least if it keeps me calm. Can't feel like I did this morning any more. Hugs, Gloria xx |
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Hi All, Lightheadedness and forgetfullness are the 2 things that really freak me out about labs. I have been good now for coming up 3 months with only a couple of hswaying moments went to thought here we go!!! Tonight though my noe is blocked and my face feels fat and as if all bunged up.I have had a very stressful day at work so maybe thats it. Brad.. i do tend to start with ear pain on the side of my face next to my ear and then the labs starts..so i do think there is a connection..hope you are feeling ok. Gloria..have a lovely weekend and try not to think about being ill i know its hard but focus on something.I find if i panic when my lightheaded feeling comes on i feel so much worse..palpitations sweating and generally a feeling of oh my god its coming back and i really stress myself out. Going to Porthcawl this weekend on a henparty for 2 nights..26 of us from work going , the kids want to come too as we went to this place for a weekend with them but noooooooooooo!!! So i hope my blocked nose comes to nothing. Does anyone else get a feeling that their cheeks are swollen and blocked but they dont look any different, around the sinus i thik.. Hope you all have a great bak hol Penny xx |
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Gloria sorry to hear you are having a terrible time at the moment but remember this too shall pass. Better days will come your way. Hope your weekend is good and you get through it ok with family round. Those situations scare me most because when I have to talk to a few people and stay alert and focused I feel really swirly headed and yuk. Take care and just keep going. Do you feel the VRT has helped you at all with the dizziness? Brad I get interimittent ear pain and fluid inside my ears. Also lots of crunching sounds when i move my jaw. The neurologist seemed to think these things were quite common with a vestibular disorder because all the little muscles in the ears and head are affected. Penny good luck on the henparty, you are brave! that is something I could not do! Shirley well done at the shopping mall. for me it is up and down in shops. Sometimes it is ok and others quite bad. the longer I stay at the shops the more tired and off balance I get so I guess I need to keep trying to build up my tolerance to them. have nice weekends all xx |
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Hi folks: Well, I"m having a pretty good day today all things considered. Not 100%, but in the 90's I'd say. Of course, ears are still fully, stuffy and ringing a bit. But dizziness isn't bad and vision is pretty clear. This is when I realize I have made progress. Out in the yard today things were not shimmering as badly. I went to CVS and I remember a month ago how the asphalt in the parking lot "looked" very weird. Almost like a photo negative. Now it is pretty normal. Has anyone else had times where things sometimes look like a photonegative? Or have you been photophobic? That is what I was like 5-6 weeks ago. Much better now. Survived my EEG on Friday and am preparing for my Brain Spect on Monday to rule out something wrong with my brain. I doubt I have anything. I saw my primary doc yesterday, who said he felt it was Labs and that it would take time, but he has seen every case recover 100%. THe only one's who haven't were one's who had permanent damage from ototoxic drugs. He want's to see me in 4 months. I PLAN on being fully healed by then :) !! So there's hope as you all have been saying. of course, the jaw is still a bit off. I wear my splints and things feel fine and better than 3 weeks ago. No muscle soreness. But the bite is off ever since the Chiro manipulation on 3/2 and I notice it when I eat. It's like the right side is pushed forward a bit. My new Chiro says the joint is in the right place with the splints...so that is good. If anything, it was out for 16 years and is now getting back to where it should have been all along. Of course, while I did aggrivate my TMJ on 3/2, I actually hope this is Labs versus TMJ as TMJ can be VERY tricky to fix. I'm just trying to get mine stable now and figure it will take 3-4 months of wearing the splints. THen hopefully I'll be fine and can go on without them. I wish I didn't have the jaw thing to deal with as it causes doubts. THere are tons of TMJ people out there who have ear pain, fullness, ringing, dizziness, and vision issues. But Labs seems much more like me. The "Fishbowl" vision is pretty typical of Labs and less typical of TMJ. Fortunately for me I don't grind my teeth, so its not like I have to worry about continuously aggravating the joint. I just had "trauma" to the joint which has thrown it off. Going to settle down and watch the Kentucky Derby in an hour or so...may even have a BEER! Cheers, Brad |
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Hi all, Well the parties are over!! My daughter looked beautiful and we had a wonderful party. I drank 4 glasses of wine today. Over the course of the whole day. As you know, I couldn't even handle one glass when I was really bad. I'm a slight bit swirly headed today. It is that time of the month though and I am very fatigued. I don't know why we clean our houses before a party. We should do it AFTER the party. Brad, you sound a lot more positive. I'm glad for that. You have such a lovely family. I checked out your pics on FB. Such beautiful girls in your life. Keep fighting this monster. I think that you have labs triggered not by a virus. I obsessed over whether or not I had labs too. I was on the internet all the time. I just decided to fight it and try everything I could to get better. Gloria, crap! Sorry to curse, but haven't you had a enough of this CRAP? I really think you need to get the issue with your neck resolved. The greater occiputal nerve runs up your neck and branches behind your ears to form your vestibular system. You may have a bulging disc in your neck that is pushing on that nerve. Have you had an MRI of your neck? Not your brain, your neck only? Jemma, how are you? Shirley, glad that you are having some good days. You sound much better. Melissa |
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Hi Everyone: Well, here is the beginning of week 12 (but whose counting?) I should say it is week 12 since my first period of feeling off / lightheaded. Although it is 9 weeks since my Chiro visit where I came out worse, and 7 weeks since my "rock bottom" the week of March 15th. That begs a good question...how long should I consider that I"ve had this. 12, 9, or 7 weeks? Hmmm. Good news is I have only gotten better since the week of 3/15. No new symptoms and only improvement. Bad news is..I'm still not 100%. Overall, I had a good weekend. Saturday was great (again). Sunday started a bit off / swirly. I got swirly going shopping at BJ's Wholesale Club. But I was great in the afternoon. Funny...when this first got bad back in March I noticed my vision was different. So I went to my eye doctors and got an updated prescription. I've been pretty much wearing my new glasses all the time (previously only when reading or at work) and it seemed to help clear up the vision clarity / wierdness. But...I definitely feel more "fishbowly" with my glasses on. Yesterday I took them off for the afternoon and for the first time my vision was clear without them. So hey, that is something. This AM I was able to get up for work without problems. Although I still seem to sweat a lot in the AM for some reason. I am a bit swirly here at work, sadly. Maybe it's the glasses contributing as I haven't worn them in 20 hours. So, yes. Feeling a bit more positive and upbeat like I"m going to beat this. Yesterday's vision clarity and lack of swirlyness in the afternoon was great. Of course, my ears started ringing very loudly in the afternoon and they were full, but are pretty much better now. Still full, ringing, but not as badly. Melissa, glad to hear the events went well. Hope your swirlyness clears. Yes, my family is wonderful and are my inspiration to get better. Have any of you considered MAV (Migraine Associated Vertigo)? That is one thing I'm worried about as I know it is difficult to treat. I have noticed some on other boards are big into considering MAV. I hope I don't have this and don't think I do as I seem to be improving. With MAV I think it would be more constant. Please keep posting to let us know how you all are doing. Cheers, Brad |
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Hi all, Melissa - sounds like you had a fantastic week-end - 4 glasses of wine! Brad - glad you are on the up. Me - well am afraid, the worst week-end since all this started back last June. Have woken with sweats, nausea/sickness you wouldn't believe and horrible dizziness. So, tomorrow going to request a referral to Queen's Square (neurological Hospital) Prof Linda Luxon who is the neurotologist. Even though I have had an MRI of my neck where is it proclaimed nothing sinister, I am going to request another one. If I can't get it on the NHS, then my dear mum-in-law said she would foot the bill. Can't go on like this. If I were a weaker person, I think I would have done something more drastic by now as life is becoming so unbearable. Thank God for my lovely hubby who is my strength through all this and I feel it is so unfair on him. I really must stop feeling sorry for myself! Anyone got any good jokes to cheer me up?!!! So glad that you all seem to making good progress. I suppose I have drawn the short straw and think this will take me quite a lot longer to come out of. Pray to God that be the case. Thinking of you all. Love & Hugs, Gloria xx |
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Gloria I really feel for you. I cant believe you have had the worst weekend since this started for you. I wonder if any of the medication you are on is making things worse? It does seem odd that if it is just labs it would get worse. I know there are ups and downs with this and today I feel quite swirly headed and yuk but I have had a few 'good' days this week. Back at work tomorrow though and dreading the increased fatigue and off balance etc. I definitely think the Queens sqaure referral is the right way to go Gloria because then you will know if you have any significant vestibular damage and if it is one or both sides affected. I have heard Prof Luxon is good and deals with dizzy people all the time so she should be the one to see. I do hope things improve soon for you. You dont deserve this. Melissa - glad your weekend well went. I cant believe you had 4 glasses of wine. I couldnt have managed that even before labs. Thanks for asking about me. I would say I am seeing improvements but some days are better/worse than others. Overall I am doing more and coping better but still not really close to 100%. Take care everyone xx |
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Gloria...so sorry to hear that. I do hope you get answers and relief soon. Jemma, glad you are seeing improvements. I go back and read older pages from time to time. I find they are very helpful, particularly when someone (like Melissa) proclaims they are basically well and then they stop posting after time (Cop on page 4, etc.) But I have noticed some linger for quite a long time. There was a guy on page 4-6, Chad, who posted a lot then he disappeared (I thought he was better), only to reappear on page 8 and 10 with updates that he was still bad off / miserable but had simply moved on. Those stories always make me stressed as I don't want to be like that. Gloria..I hope you get the answers you need. I'm always amazed that we can transplant a heart, but don't understand the vestibular system very well. That got me thinking of who is the longest time current poster? SHirley? Jemma? Have you guys ever considered MAV? I have read some people have good luck on anti-migraine meds. Cheers, Brad |
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Sandie has been posting since mid 2006, Brad, afaik. I don't recognise any of the other names from around that time. Which I take as a positive, those people don't need to post anymore so hopefully they've all recovered. |
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Ok folks...another post. (Sorry) I have 2 quick questions for the group. 1) Have any of you ever had one ear or the other suddenly go "quiet" and then ring really loudly for a few seconds (5-10)? It seems my "rock bottom" time was precipitated by periods of both ears (primarily left) doing this. Good news is, they haven't really done it recently and I'm hoping that is a good sign. 2) Have any of you heard of SCM Syndrome? The SCM is in your neck and supposedly it can cause the brain fog, fishbowl vision, etc. Not sure about the ear pain though. I ask because I've found some people who had SCM issues and whose symptoms were similar to ours. Thanks. |
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Okay...another update. So I visited an alternative doctor a few weeks ago who is Lyme Literate. I had already been tested for Lyme disease by my doctor but it came up negative, but then 50% of the time they do. So this alternative doctor ordered some highly specific tests for Lyme. The Doc called today to say I have tested positive for 4 bands of IgM (2 current / active, 1 long term), but negative for IgG. So she thinks this means it all could be Lyme...and probably something I've had for a while. Bummed :( If it is Lyme, treatment at this stage is difficult. B |
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Gloria, When I read your post, I cried. I know how you feel and God it sucks!!!! I wish I could just heal you and give you some better days. You are such a sweet, positive, caring person. You WILL get through this. I know it! I'm praying hard for your recovery. Jemma has a point. Do you think it could be the medicine you are currently taking? I know that around the time of day when I am supposed to take the Zoloft, I feel a slight bit off. Within a half hour of taking it, I feel fine again. Food for thought. I am a proponent of taking an antidepressant during this illness, but maybe you need to ask for a different one. Lexapro is supposed to be good and I've no trouble on the real Zoloft (not generic brand). I'm sending you hugs and kisses!! XXOO Jemma, I'm so glad that you are feeling and dealing with this much better. You are well on your way to being 100%. I know, before I had labs, I couldn't handle 4 glasses of wine too. Actually it was a light white wine and I drank them over the course of seven hours. Brad, when you say alternative doctor, what do you mean? I went to see an osteopath that was a kook!! She said she thought I had a thyroid issue. She based it on a test, where I had to place my palm on some machine and it read me. I still have no clue how it did that!! LOL That was when I knew I hit rock bottom chasing around doctors and diagnoses. Also, how would the alternative doctor treat you? I know the osteopath wanted me to purchase over two hundred dollars worth of vitamins and minerals. She wanted me to take fifty different things over the course of one day. I just stuck to the regular multi vit and b complex I take everyday. Oh yeah, my GP did find that my iron levels were way high. I remember when I was pregnant with my son 11 years ago (ahhh) I was anemic and the ob/gyn prescribed extra iron supplements. I continued to take them after he was born and I was so dizzy and lightheaded all the time. I decided to stop taking the iron and viola, no more dizzy, lightheadedness. Of course I made the connection and stopped taking the multi vit with iron. It has really helped me. Now I mean. So tired from this past weekend. The swirly head is gone. It seems like it comes very briefly for me now and then it resolves. I'll take that anyday over what it was like. Keep the faith, Melissa |
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Hi everyone: Melissa...by alternative doctor, I meant she specializes in chronic conditions. As she puts it, people come to her after all of the other doctors haven't been able to help them. She is well versed in Lyme (and is known as a Lyme Literate MD (LLMD)). the first thing that my ENT did back in March was due a Lyme test. But it was the regular ELISA test done by Labcorp and I guess there is at least a 50% false negative on this. THis new doctor did the Igenex Western Blot test for IgM and IgG Lyme Antibodies. I guess my IgM came back "quite positive" with 6 "bands" showing positive, (4 indicating active infection, 2 indicating long term (>1 year)). My IgG was negative. So...that is where I am. Ug. Feeling so down. So I'm not sure if Lyme is at the root of my Labs or my sweating / GI issues. Probably. What's frustrating is there is so much controversy on how to treat Lyme. Some docs just do the 2 month antibiotic and claim you are cured while LLMD's tend to know this doesn't usually work and want to do a more thorough treatment. Treatments can be pretty harsh. Very nervous about what this could mean. On one hand, it would be great if I got treated and got better and then all of my problems went away. On the other, it would suck if this is Lyme that doesn't go away and turns chronic, meaning this could be just the beginning of misery for me. |
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Brad, Why don't you try the least of the two evils first? Try the two month antibiotic course of treatment and then take it from there. If it doesn't work, then try the harsher treatments. By the way, what are the harsher treatments exactly? Does your insurance cover this doctor and her treatments? Have you discussed the results of her test with your regular GP? Melissa |
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Hi Melissa: I spoke to a guy earlier today who runs the Massachusetts Lyme Disease support organization. I tried to get names of good "LLMD's" (Lyme Literate MD's) to treat this. They are few and far between in Mass and most don't take insurance. He gave me a good name of a doc in NYC who is the best in his opinion, but it will cost like $1000. He also recommends "agressive treatment" to knock it out / back hard rather than casual. The fact that my eyes / ears are affected indicates, in his mind, that I may need IV antibiotics. Getting so so stressed. I liked it better when I thought I had plain old Labs, rather than Lyme related Labs. B |
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Brad, I think that you need to back track a little bit. First calm down about all of this. Second, I really think that spending $1000.00, not to mention the cost of travel to NYC, is a bit much. I do know how you feel and you are in a place now where you would cut your arm off if it meant you could go back to feeling normal. I'm looking at it from the outside now. You will heal. Try the Vestibular Rehab Therapy. Try the neck deep tissue massage. Try a shorter course of antibiotics. If they don't work, and you still feel like crap, then explore the more expensive and different options. You have to give this labs time to heal. It takes a year for any nerve to fully heal. I'm not trying to be mean and am sorry if I am coming off that way. I'm just speaking from experience. Please don't take anything personally. I know exactly how desperate you are to feel better. Melissa |
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Hello, I was hit be labs in December and I'm trying to work my way through it. I've been to the ENT, had an ENG and an MRI. I wasn't prescribed VRT, as my symptoms seemed to be improving. Now though, I feel like I've plateaued, and I'm not happy about it. I found some balance exercises on the web (turning in a circle, head up and down, head to ear and head side to side, all with my eyes closed), but I'm wondering if anyone has any other suggestions. I'm going back to my ENT on Friday, but thought I'd ask here too. Aside from this, I'm generally pretty healthy. I don't have any other illnesses, and I'm fairly young and active. jen |
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Hi folks: Thanks Melissa. I know...trying to calm down. If this is Lyme's though I need to treat it quickly rather than letting it get worse. I also have to be treated for co-infections as that could be what is causing the sweating, etc. I am doing VRT today. BTW..I found this on the John Hopkins website re Labyrinthitis...look at the last sentence on Causes (I added the caps.) Labyrinthitis Labyrinthitis usually refers to an infection of the inner ear. Other names for this condition are vestibular neuritis, vestibular neuronitis and neurolabyrinthitis. Hearing may be affected, and when it is, the term labyrinthitis is used. Causes Inner ear virus Flu-like respiratory illness Stomach virus with gastrointestinal symptoms Epidemics of labyrinthitis can occur so that many people in the same town can be affected with an attack of vertigo. Occasionally, a herpes virus, which also causes cold sores, shingles or the chicken pox Bacterial or other infectious organisms, for example the organism that causes LYME DISEASE |
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Hi All, Gloria..i feel so upset for you, you have gone through so much and to be back the way you were you do not deserve, you have helped me alot on here and i feel for you..chin up you will come through it..and your hubby sounds like a star!! Melisssa..4 glasses of wine well done, i am on the hen party this weekend in sunny Porthcawl, wales so i will be having a glass or 2.Hope i stay ok as i have been good now for a while. Still got the occasional neck creaking and off balance but all in all i am ok. Brad...i know its hard but try and stay calm, did you enjoy the Kentucky Derby? Jen..hope you are feeling ok and you will come through it.Unlike alot on here i havent done any balance excersises i went to ent in 2006 had an mri which was clear and told by ent i had allergic rhinitus...kep having the awful symptoms and back and for to dr when labrinthitus was diagnosed....to was so off balance i was to sared to do exercises and wasnt ofered any.. I dont know if anyone else agrees but you really have to push dr etc to get any help with labs they seem to taboo it..maybe not much is known about it..i am alot better hpe you all feel better.. Penny xx |
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Hi Folks: I'm not trying to hijack this and make it a Lyme thread. Just trying to share some info. See symptoms list below from http://www.canlyme.com/patsymptoms.html I have well over 20 and am positive for Lyme. It can cause Labs. PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup ) Symptoms of Lyme Disease The Tick Bite (fewer than 50% recall a tick bite or get/see the rash) Rash at site of bite Rashes on other parts of your body Rash basically circular, oval and spreading out (more generalized) Raised rash, disappearing and recurring Head, Face, Neck Unexplained hair loss Headache, mild or severe, Seizures Pressure in head, white matter lesions in brain (MRI) Twitching of facial or other muscles Facial paralysis (Bell's Palsy, Horner's syndrome) Tingling of nose, (tip of) tongue, cheek or facial flushing Stiff or painful neck Jaw pain or stiffness Dental problems (unexplained) Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose Eyes/Vision Double or blurry vision Increased floating spots Pain in eyes, or swelling around eyes Oversensitivity to light Flashing lights/Peripheral waves/phantom images in corner of eyes Ears/Hearing Decreased hearing in one or both ears, plugged ears Buzzing in ears Pain in ears, oversensitivity to sounds Ringing in one or both ears Digestive and Excretory Systems Diarrhea Constipation Irritable bladder (trouble starting, stopping) or Interstitial cystitis Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease) Musculoskeletal System Bone pain, joint pain or swelling, carpal tunnel syndrome Stiffness of joints, back, neck, tennis elbow Muscle pain or cramps, (Fibromyalgia) Respiratory and Circulatory Systems Shortness of breath, can't get full/satisfying breath, cough Chest pain or rib soreness Night sweats or unexplained chills Heart palpitations or extra beats Endocarditis, Heart blockage Neurologic System Tremors or unexplained shaking Burning or stabbing sensations in the body Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis Pressure in the head Numbness in body, tingling, pinpricks Poor balance, dizziness, difficulty walking Increased motion sickness Lightheadedness, wooziness Psychological well-being Mood swings, irritability, bi-polar disorder Unusual depression Disorientation (getting or feeling lost) Feeling as if you are losing your mind Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Narcolepsy, sleep apnea Panic attacks, anxiety Mental Capability Memory loss (short or long term) Confusion, difficulty in thinking Difficulty with concentration or reading Going to the wrong place Speech difficulty (slurred or slow) Stammering speech Forgetting how to perform simple tasks Reproduction and Sexuality Loss of sex drive Sexual dysfunction Unexplained menstral pain, irregularity Unexplained breast pain, discharge Testicular or pelvic pain General Well-being Phantom smells Unexplained weight gain, loss Extreme fatigue Swollen glands/lymph nodes Unexplained fevers (high or low grade) Continual infections (sinus, kidney, eye, etc.) Symptoms seem to change, come and go Pain migrates (moves) to different body parts Early on, experienced a "flu-like" illness, after which you have not since felt well. Low body temperature Allergies/Chemical sensitivities Increased effect from alcohol and possible worse hangover |
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Hi all, Thank you SO much for your kind words of comfort. Still not feeling too great, but I suppose because I recognise the symptoms, have made myself get on with it as much as I can. The mornings are the worst. As soon as my brain realises its daylight and I start to stir, then I get horrible sweats and nausea. Brad - in my local newspaper yesterday a woman had written about motion sickness - similar sensations to labs. The doctor replied that when the brain cannot make sense of the signals it is receiving about your movement from your eyes and inner ear (even marginally) - this can cause an awful set of symptoms including nausea, dizziness, sweats, vomiting and stomach upsets. I went to my doctor yesterday about the referral to the neurotologist. She will try but isn't sure if they will accept her referral and may end up having to go private again! So will see. The fact of the matter is that I am coming up to 11 months with this and am still breathing - so another few weeks wait won't hurt. I am off all the other meds but have gone back onto the Amitriptyline which is a different type of anti-depressant than the Prozac type which I can't seem to take. So hope it kicks in soon. Also went back to the physio again yesterday who said my neck is still aligned after her slight adjustment and cannot see anything else that would present a problem, but I will still pursue the nerve/neck thing. Penny - Thank you for your support. Did you have a good hen-party? Any effects? I did think of you. Melissa - no after effects from your hectic week-end is a very good sign! Thank you so much for your hugs & kisses & kind thoughts. It helped a lot. Jemma - hope you are OK now you are back to work? Again, so sweet of you to show your concerns. I do remember the ENT consultant and the neurologist say that it can come back again in addition to peaks and troughs. Although, they said not so bad. So, maybe that is what has happened to me. Typical! All of you keep getting better and better. Love, Gloria xx Again, huge thanks for your |
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Brad, You are a good sleuth!! How did you find such a informative sight? I have to say that here in my town, I know of about 5 people that were hit by labs at the same time I was. We all thought it was weird, but now this explains it! Get your Lyme resolved asap. See if it helps. Get into VRT too. It will help. Melissa Gloria, you are always in my thoughts and prayers. You are way too nice of a person to be struggling for so long with this SHIT!!! XxOO |
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Hi folks: Thanks for the support and kind words. Melissa..Google is my best friend! I did want to pass along the following site. It lists all of the symtpoms of Lyme disease (there are numerous.) Supposedly if you have 20 of them or more than you are likely a Lyme sufferer. So many of them are Lab's like. You don't need to have joint pain (I don't), nor do you ahve to recall getting bitten or having a rash (I don't.) ALso...the standard Lyme tests are are notiorius for false negatives. Check out below. (BTW...not trying to hijack this into a Lyme board. I do think I have Labs, but think Lyme is the reason.) http://www.canlyme.com/patsymptoms.html |
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Hi all Well I am back at work and feeling very tired and more off balance. I am under a lot of pressure with a huge workload and it would make my head spin anyway let alone with labs! I just cannot see myself being able to do full working days anytime soon. 6 hours a day is too much! that said I am probably coping better than i would a few months ago under this much pressure however I would love to feel normal in my head again. Gloria we are all here for you and hoping you see better days. I am convinced that in Sept/October something happened to my ears again because my dizziness went worse. At that point I had been ill for 5 months so to get hit again is just so distressing. If something else has happened to your ears or the other ear I believe it is possible but god is it scary and depressing. You think you are improving a bit then it goes worse and it just makes you lose hope but dont because things will pick up again. Brad the whole Lyme theory is interesting and it is something i considered at the beginning when i was frantically trying to find out what had happened to me and how my life could have changed overnight! My blood tests did not show anything wrong with me at all even though i wanted them to just for some answers but if at least if you know what is wrong you can come to terms with it and hopefully deal with it. In a way the hardest thing about this is the lack of proper diagnosis and the strange symptoms which mean you start questioning everything searching for answers. You will work it out in the end. Melissa thanks for giving us all positivity and hope for recovery. Shirley, Susanne, DC how are you doing? Take care xx |
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Thanks everyone. I actually did okay today. Not great, mind you. But not bad. My anxiety was pretty low. I think now that I am Lyme positive I am somehow "at peace" with the diagnosis. I have met other "Lymies" who have full, ringing ears, jaw pain, and "Labs Like" symptoms, so it makes sense, particularly with my sweating, chills, and GI issues Now I can just focus on treatment. I started VRT yesterday. My problem movement is when I have to stare at a letter and shake my head back and forth. Jemma...there are numerous people with Lyme to test negative on every test...yet they have it. I'm not sure if that is you or not. Obviously, not everyone with Labs has Lyme. But...check out the link with the symptoms list and see how many you have. If you have more than 20 a LLMD may classify you as Lyme regardless of your test results. I am actually quite thankful I have tested positive and that I pushed for the new doctor. I shudder to think if I had lyme and didn't know it...I would only get worse with time...and the longer you wait, the more difficult it is for you to get cured. Keep the faith and thanks for the support. |
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Well, I hit six months of this nightmare today, and for all the positives I can pick out about things that don't bother me now that did even a month or six weeks ago, I can't escape the fact that overall I still feel pretty awful almost every day, particularly at the moment. This past week my vision has been bothering me a lot, and today I'm more "swirly" than I've been in a few weeks. I really thought that by six months I would have turned a corner, but for all of my good moments I just don't know how much longer I can fight on - I want to stop just existing and start living again! In other news I have my MRI appointment through for towards the end of the month - I'm not looking forward to it one bit, but perhaps it'll give me some reassurance as the ENT said. |
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Andy, I know how you feel! At six months I still felt crappy, but that was when I seemed to turn a corner to better and better days. Now I'm recovered from labs. My ENT told me that it takes one year for the nerve in your ear to fully heal and regenerate. Try to keep that in mind as you are healing. You are definetly in the home stretch of this wretched disease. As for your MRI, I'm sure that they will find nothing. Keep the faith. Brad, what did the results of your MRI say? Have you got them back yet? Gloria, Jemma, Sandie, anyone out there? LOL Melissa |
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Hi all, Andy - just know how you feel - as we all do. I remember when this thing first came. I had never heard of such a condition let alone the myriad of horrors it produces. A friend told me of a friend of a friend and she had it for 8 weeks. I was horrified at that! Then someone else said they knew someone who had it for 3 months so on and so forth. I, too, thought that mine would probably be 3 months or so if I was unlucky! HA!! As you have probably read, at 11 months I have experienced a real step backwards. Something that I was told this can do, but you never want to believe it will happen to you. Lately, I hit rock bottom wondering just how much more I can take. In reality we do go on - WE MUST. Out of this horrible relapse I have analysed that whilst the symptoms are a mirror image of when this started, they are awful but not as bad. Whether it is because I know what it is, I am not so scared and am fighting every day. For instance, today I have started to paint the spare room. Feel so sick and dizzy, but I couldn't have done that last year - I was still in bed. I paint a bit and then have a break to let my head settle. Not that it ever really settles. Presently, it feels like a completely mis-programmed robot with all sorts of feelings, weird sensations and zingy, zappy charges going through my head. What I have noticed however is that my visual symptoms have improved. So I think it is snail's pace with each little thing slowly getting better. Like you Andy, we want to live and not exist. Hold on in there - I have no idea how long my recovery is going to take. At the moment and with how I presently feel - I think I have a good few more months yet, but I just hope and pray that overall the symptoms will start to diminish and become easier to handle. Hugs to you all, Gloria xx |
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Looks like I spoke too soon about my MRI on the NHS, it's been cancelled already! They aren't sure when it'll be rearranged for at the moment. Gloria, funnily enough this week I swear the more dizzy I feel the less problematic my visual symptoms seem to be. I'm not sure if that's actually the case or whether one symptom just causes me to notice the other less. |
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How typical is that Andy?! Keep ringing them to ask for another date asap. My god-daughter, who has recently undergone a gall bladder operation, despite being in so much pain and assured she was being treated as urgent and would be admitted within 2 weeks, finally got admission after 6 weeks. That was because she kept e-mailing the consultant's secretary and making a nuisance of herself. Also, like you when I am more dizzy, spinny headed, with me I notice the muscles over my head and neck - which are more or less in permanent spasm - don't seem so tight. Or, I just think now I over analyse every little symptom. Hard not to do otherwise though isn't it? By the way Andy how is your mum doing? Well, the forecast for the UK is not too brilliant this week-end. They say barometric pressure affects labs, so I don't hold out for much of an improvement this week-end!! We live in hope and perhaps may believe in a miracle or two! Gloria x |
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Gloria - Gosh, how disappointing about this setback. So very discouraging for you. As we all know, you will get back to where you were! Believe it! In the mean time, hang in there and roll the with punches. I can't believe you're painting - doesn't it just make you nauseous? Don't overdo it. I continue to slowly get better with a few blips throughout the day, much definitely more good than bad days. Sometimes I'll sit back and think, wow, this is really what it's like to feel normal. That has been a foreign feeling for the past year. Although I still need to watch my limitations and not over exert myself. This labs thing really affects me physically by draining my strength along with fatigue. I do notice small improvements weekly and am able to finally do a little gardening and able to make a meal without being exhausted. My ears occasionally still ache and make cracking noises. The lightheadedness has gotten a lot better too. So here's hoping it continues. |
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Hi All, Gloria - I am so sorry that you are having a return of those horrible symptoms, I really feel for you. You don't deserve it, you have always been so kind to me when I have been at my lowest, with lovely words of encouragement that have kept me going. Feel better soon x Melissa - 4 glasses of wine!!! I am so jealous - HA. I saw your photos on facebook, what a lovely family you have, you must be so proud. Penny - how did the hen party go ?? An update on me: well been good for the last 3 weeks or so, I did have a couple of wiggy days over the last weekend but apart from that its been quite good, I would say I have been about 95 per cent. To me it seemed that when I hit the 6 month mark things started to change for me although I don't want to get complacent as I am so frightened that the symptoms will return. My visual symptoms seem to come and go, one day I can just breeze through the shops, the next the lighting will get me off balance and swirly headed. However, what I have noticed is that the longer I am there the better my brain seems to adapt. My main symptom now is anxiety. I really have to push myself to go into the supermarket, drive, walk down the road, etc. I am hoping the longer I am feeling ok, the easier it will get. I am still due to have the caloric test on the 17th of this month and an MRI at the end of the month but am now wondering if its worth having these done as I am feeling better. What do you think I should do? I am still having some pressure in my ear but I am wondering if this is anxiety as when I think about it the pressure seems to feel worse. I have never suffered with anxiety before so this is all new to me. Take care Shirley x |
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Shirley, anxiety and labs are like peanut butter and jelly. They go together so well! LOL I never had a panic attack until last summer when labs first hit me. It was so scary. As for the testing, I myself bailed out of the caloric tests. I did have a CAT scan and an MRI. Of course, they were fine. The MRI showed three bulging discs in my neck. You have to ask yourself if having the tests will help ease some of your anxiety. If so, then get them done. If it doesn't matter, then don't have them. Gloria, Gloria, Gloria this is not fair that you feel so terrible! You are so kind and don't deserve this. Did you catch a cold? Are you getting enough sleep, exercise etc...? I wish you could fly here and do VRT with my old physical therapist. She was so great at getting the kinks out of my neck. Feel better and keep painting, very good vestibular exercise! Have a great weekend everyone. Shirley, thanks for the compliments on my pictures. They are good kids and I have a great husband too. Melissa |
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Hi folks: Just an update. So I met with my neurologist yesterday to review the EEG and brain Spect. I had these ordered after my brain MRI showed some potential atrophy of the parietal lobes. Good news is EEG was normal. Bad news is Spect was not. They didn't have a diagnosis...other than it wasn't alzheimers / dimentia (good.) I told him I was just diagnosed with Lyme and this was probably the reason. He wants to do a spinal tap. NO WAY. They are hugely unreliable for Lyme and too painful. I start my treatment Monday. Wish I had started earlier as I'm now noticing odd muscle cramps. Funny...back when this whole thing started in February, I remember my right thigh hurt for several days. I thought it was odd as I hadn't done any sort of exercise. Then a few days later my right calf felt cramped. Looking back..it was Lyme and my Spect confirms it, although my neurologist yet believe. I'm glad I found amore Lyme Literate MD (LLMD). I'm definitely feeling the tug of war between mainstream and Lyme doctors. My primary tried to tell me its a recent infection, but it isn't true as 2 of the bands I tested positive on only show up if you've had it for a year. I think I'm called "early disseminated" Lyme, which means I'll probably need 4-6 months or so of anitibiotics, maybe more. I also most likely have some other tick borne co-infections like babesia or bartonella. That could have caused the gastritis I was diagnosed with in March. It is all coming together like a giant puzzle. My primary concern now is hoping / praying I've caught it early enough to kick it completely forever. I'm a little frustrated i've had to wait a week before starting treatment. monday can't come soon enough. Keep pushing! Hope you all feel better and thanks for the support. |
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Hi Have just found this site after searching for some time for answers!! Feel very woozy after reading some of the comments. I am 39from the UK & have been suffering from this condition since beginning of Feb. Now about 13 weeks. Have seen an ENT consultant privately & had MRI a full blood tests, all ok. Have been told it is Viral Labrynthitis & waiting to start VRT. Last week I actually started to feel worse. Dizzines worse when lying down also pressure in head. Have lost weight as i cant always sit & eat a proper meal. Evenings are my worst time & usually i break down when my husband gets home & I cant take anymore. I have 2 children aged 12 & 10 & feel like I am not living but just existing. I know it must be very hard for people to understand this condition if they havent experienced it. So is nice to find other sufferers although I cant believe it can go on for so long for some people especially when i was told it would only last up to 8 weeks!!! Has kicked off huge anxiety too so struggling with that but determined to stay off medication. Please someone tell me that they are getting better as i need reassurance I even think the docs may have it wrong & maybe there is something else wrong with me ( I know that isnt logical thinking but very hard to stay positive) |
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Claire, Welcome to Sharp Blue. It is an amazing blog, with lots of great, supportive people. I can tell you that I am healed. It took 6 months before I started to turn the corner to being symptom free. Now I am 100% symptom free. I got labs last May and it was awful!!! My ENT told me 3 months and I would be all better. Yeah, right! It took me 9 months to feel symptom free most days and 10 to be completely recovered. You will heal, it just takes time. Good luck. Brad, What is a brain spect? Why do they want you to do a spinal tap? Melissa |
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Hi Claire, I'm not one that normally comes on here to answer questions or give advice, I normally leave it up to the other sufferers on here as they have much more knowledge, but just had to write and say hang on in there, it will get better. I have had this thing for just over 6 months now, which might seem a long time to you but I know others on here have suffered a lot longer. Although not completely symptom free I am back to around 95 per cent. Just because I have had it this long and others longer, does not mean that you will also suffer for so long, there is simply no time limit to this. My advice would be to get into the VRT as quickly as possible and try to keep yourself moving. If you feel tired then rest. Just go with what your body tells you. This is not a quick recovery illness, it takes time for your brain to adjust to the damaged nerve. Take it one step at a time. I also am having huge anxiety issues and at the beginning suffered terribly too. Apparently its all part and parcel of having this thing. Keep strong Claire, you will get there as we all will. Someone on here wrote "Keep the faith" and that's what we are all striving to do. Hope everyone is ok .. Gloria not heard from you for a while, let me know you are ok. Shirley x |
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Well after thinking I was seeing some improvements I am having another relapse. I think the stressful week at work has taken its toll on me. I have been waking in the night dizzy. Last night woke up with a numb leg and started sweating and panicking. My head is so woozy and lightheaded and my neck feels a bit out of joint. God how i hate this thing. Gloria you are not alone! Brad sounds like the Lyme thing is looking likely for you then. Hope you get the treatment you need soon. I dont know that much about Lyme but from what what you said it sounds like it can be resolved or become a chronic thing? is this right? do you know anyone who has or has had it? Claire welcome to the site. This illness is awful but people like Melissa give us hope it will go away. So glad you are now 100% Melissa, its great to hear a positive outcome. Love Jemma xx |
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Hi Melissa & Shirley Thank you for replying to me. Its good to know that there is an end to it I will try & not focus too much on how long it took you both to recover!!! I really want a Lab free summer as I am 40 in July. Thought I wanted a big party & stuff now I cant even think about whats happening tomorrow. I know I have to be positive or else it will just take over my whole life & I dont want that to happen for the sake of my poor family. Gloria I read your comments & sorry you have had a relapse I understand what you are saying about the brain zapping feelings I also have these symptoms very scary & usually increases the anxiety which i know doesnt help either. Nice to know there are others out there in the same situation but in a way wish there wasnt, so none of us were suffering Claire |
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Hi folks: Jemma...I may be able to be completely cured provided I find the right doc for Lyme. I have "early disseminated" lyme with mostly neurological symptoms effecting my eyes, ears, and brain. I also suspect I have at least 2 other tick borne diseases, bartonella and babsiosis. So I probalby need to kick all 3 and it can take up to a year to do. But life is supposedly good after that. It will most likely cost a pretty penny, but people do it. If I get an inexperienced doctor, the chances aren't as good. Claire..welcome. Hang in there, it will get better. I do have to say my Labs (which I believe I have due to Lyme) is much better this week. I think my mind is just much more settled knowing Lyme is the cause. Yes...that is scary, but it is almost giving me something different to obsess about, so I"m not constantly focusing on "how is my vision, balance, etc." Went shopping today. No problems. Ears are still ringing..but that is the Lyme. Keep the faith. B |
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Hi everyone, Welcome Claire - sorry you too are suffering. Shirley/Melissa & Jemma - thank you again for your wonderful support and concern. Do you know - I really do not know what I would do without you all. Claire - you are so right. Unless you have or had this no-one knows how wretched you feel because from the outside we all look great! Claire at your stage I too lost loads of weight because I couldn't sit and eat - my head would be really swirly and the sickness and nausea for me have been horrendous. For me progress is there but it has been slow. I think because i had such a bad viral infection (chest/stomach) which coincided with all this, I was laid low for weeks and weeks. The infections alone took ages to go, so I am not surprised I am taking longer with this. You do get better at handling all this and there are much better days and not so good days. Apparently, the idea is that the good patches start to outweigh the bad, but as you may have read this peaks and troughs all the way through. I am better than I was last week-end, but still feel at the worst end of my better phases if that makes sense. Still - have decorated the spare room which I am glad I achieved but each day is still ' take a deep breath and battle to get through'. Jemma - like you, I have been finding that I wake up in the night and feel really off, something I haven't experienced before. I am so sorry for you - you have been doing so well. My hubby thinks it is because we think when we feel a bit more able, we do too much and forget we can't do as much as perhaps we all used to. No doubt returning to work hasn't helped Jemma. Claire - keep in touch with us here. It helps to off-load especially if, like we all have, is feel like crying your eyes out because of feeling so desperate. You will soon start to see a difference. Susanne - how great to hear from you and so glad you can see improvements - at last! Have been thinking about you as we are having our family over from Vancouver to stay with us in July for a while. Haven't told them about all this and just hope I am having a good patch to see me through their stay. I was so envious reading about your trip to the Gulf Islands - it is truly a magical part of the world! Keep in touch to let us know of your progression Susanne. Onwards and upwards - let's see what this week brings! Love & hugs, Gloria xx |
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Happy Mothers Day! Do you celebrate Mothers Day in Europe? Well of course, I opened my big mouth and said I was 100% better and guess what? You guessed it, I'm a bit swirly headed today. The only connection I can make is that I did have a lot of salty foods over the weekend. Whenever I do, I retain water and then my ears fill with fluid and you all know the rest. It isn't awful, just annoying. Gloria, what color did you redo your guest bedroom in? I just painted my bedroom Buxton Blue by Benjamin Moore Paints. I'm going to watch some TV and then off to bed. Keep the Faith!! Melissa |
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Hey everyone--my name is Bonnie and I am new to this blog and to VL. I'm actually an RN at a major trauma center--last week I was at a patient bedside when out of the blue, I turned my head and was so dizzy I essentially fell over. Everyone thought I had passed out, but I hadn't really suffered a loss of consciousness. They ran me through my own hospital's ED (which was incredibly embarrassing since I knew everyone that was assessing me) and then I followed up with my primary care provider. After the event I felt mild dizziness that was somewhat intermittent. It became progressively worse and since last night I have had constant dizziness that makes it difficult to move. Despite the beautiful weather, all I want to do is lie down and not move. I haven't really had nausea per se, but I do have ringing in my right ear and the sensation of pressure in both ears. I haven't noticed hearing loss. I've had to call in sick the last few days and have already used up all my sick time since I work 12 hour shifts. I plan on going to my doctor tomorrow to see if I can at least get a medication to relieve the dizziness so that I can go back to work. Right now I'm terrified--I can barely make it through the day right now, how will I be able to make it through a 12 hour shift of running around on my feet with almost no break? My primary care provider says she thinks its VL, or possibly an acute incident of Meniere's, although that is unlikely as the only other time I felt this way was when I was 16 and had a severe middle ear infection. She says it will pass in 1-2 weeks and didn't prescribe anything. Does anyone have recommendations on a medication to ask for? Or ways that you have managed to make it your job? My other fear is that as I've been reading your entries, it seems that for many people this has been a chronic illness. Thanks so much for posting and helping to explain what's going on. I wish you all the best. Bonnie |
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Bonnie, Welcome to Sharp Blue. In telling my story to people, I found that the majority of the people who told me they had had labs, were health care workers. My children's pediatrician had labs twice! Yikes!! You're in the worst of this right now. I get anxiety just thinking about that time in my life. Labs and anxiety go hand in hand. So try to relax. You need to rest as much as you can now. Is there any way that you can take some time off from work. I think 12 hour shifts at this point in your illness may put you over the edge. As for medicine, well this is a long topic. LOL When I was at my worst I took Antivert. It worked, but made me very tired. I also found that Xanax worked to help slow my vestibular system down and ease the anxiety. Give up caffiene for now, drink a ton of water, eat well (eliminate salt). As for the 1-2 weeks, no one knows. Maybe you will be done with this then. Most people do recover within 3 months. Just try to be calm and you will be fine. Melissa |
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Hi Bonnie Welcome to the site, it sounds like you might have BPPV. If you experience severe vertigo on moving your head then that can be BPPV however it would be best to get the doctor or ENT to do the checks for this and maybe try the epely manoeuvre. For me I think I have Labs/VN (vestibular neuritis)and it has become a chronic problem which I have had 24/7 for 13 months now but it isnt this long lasting for everyone. I am still struggling with work and have reduced my hours although with this recent setback I really feel like I need to give up altogether. My job is desk based but there is no way I could do your job which sounds really physically demanding. It may be worth trying and seeing how you feel but if you cant do it then you will need to take time off. I have been pushing myself to work for the last year and it is really tough. Gloria, Sandie, Gary and those who have given up work due to this, I wondered if you claim any benefits etc and do you have to keep getting sick notes from your doctor? I think the stress of keep going to the doctor every week for sick notes would be awful, can you give me any advice my friends? Melissa sorry you have a swirly head again but im sure it will be short lived for you. Take care all Jemma x |
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Hello all Glad I found this site have realised now i am not going mad & its okay to feel miserable sometimes as it is a really miserable condition. Had a bad weekend lots of dizzy spells,headaches etc. Went to bed in a foul mood last night couldnt even talk to my poor husband after the children went to bed. Had to put my happy face back on this morning for the school run. Managed to force myself to the gym today for a touch of normality. Hard work. I also have a horrible feeling of weakness/shakiness in my left leg & sometimes right I thought going to the gym might help to strengthen them. Does anyone else experience this strange feeling? sometimes feels like my legs are dizzy too!!!!! Melissa do you sometimes feel like you are scared to say you r feeling better because as soon as you do it comes back again? Thats happened to me a few times now. My friends seem almost too scared to ask me now how I'm feeling because I know that all they want to hear is good news but almost feel bad that I have to tell them I'm no better. Anyway got my appt thru for VRT on 25th May its private so now have to find out if my insurance will cover it. If not I will find the money as I am so desperate for some help. Just realised I sound so miserable!!! Will try to not post on here too often when I'm feeling like that would be good to put something positive on next time. Thanks for listening Claire |
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Hi all, Melissa - you as well as Jemma - isn't this the craziest ever, ever thing. I am sure for you, because you have been so great, it will be a 1/2 day blip. Again, because you have been dashing around, so busy, it does seem that it takes it's toll. Maybe we should all retire to a chaise longe (is that how you spell it?!) and have someone peel grapes for us!! We sort of finished the spare room. Ours we have done in a light apple green and cream and cream carpet. You can tell we don't have kids!!!! But, today, because I did too much again, I think, I feel really UGH today. Not as bad as last week though. You get grateful even for that! Happy Mother's Day by the way - we have ours in March - so done and dusted over here in the UK! Hope you had a good time and were treated to lots of nice things! Bonnie - hi. From the way you have spoken I guess you too are based in the States? Labs can strike at any time, so I believe, and you don't have to have had a viral infection prior. There are anti sickness meds like Anti-vert (Melissa can advise you on what to get where you are). If it is definitely labs, then unless you really have to, try not to take them as this hinders the brain recompensating the balance mechanism. Menieres is different and usually only lasts for a brief time, then you go back to feeling OK again, but you do need to get it verified by an ENT person so you know for sure what you are dealing with. As you have probably read, some of us have had labs for a while, (which is unfortunately quite normal, but people get over it at different lengths of time) but amazingly we do cope even though it tests the very last drop of patience sometimes. Keep strong, you will be Ok and let us know how you get on. Jemma - hope you have picked up. Are you still doing your VRT? I go back to see the new VRT therapist this Wednesday. I really don't know. I have been doing them most days, but have they made a difference - I really can't say. To be honest I am not sure. What do you think? Gary - are you having better days or are you still not having a good time also? Andy - hope things are better with you too. Keep in touch - nice to know you are all there. Hugs, Gloria xx |
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Thanks for getting back to me, Penny. I went back to my ENT and after a frustrating appointment, I'm shopping for a new doctor. I managed to get three possible diagnosis in less than 15 minutes. He didn't seem to know what VRT was either, and gave me BPPV exercises to do instead. I'm curious what people here were told when they were diagnosed. What ruled out other illnesses like Meniere's? jen |
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Hi Everyone: I hope everyone is going better. Jen...Meniere's was ruled out for me because my ECoG, ABR, and ENG were "normal." The ECoG would normally show liquid in the ears if you had menieres. Also, menieres is usually in one ear or the other. It is not as common in both ears. For me..I was told I had Labyrinthitis by my ENT. It turns out he is correct...except the root cause of my Labs is Lyme Disease. I tested negative on the original blood test from my ENT, but positive on a more sensitive test from an alternative doctor. Some people never test negative, yet they have it. I started my Lyme treatment last night. Heavy Doxycycline and supplements and then a Flagyl purge for 3 days every 2 weeks. Not looking forward to Flagyl. Praying it will work. Doc says I may need treatment from 6-18 months. Ug. Keep pushing. |
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Gloria, I am feeling much better. It passed quickly. Strange as this might sound, I got really swirly headed yesterday when I was drinking what I thought was decaf coffee. Maybe it had caffeine in it? Caffeine seems to make me very dizzy and lightheaded. The feeling went away after I rested for about an hour. Just a thought. Jen, one ENT I saw thought maybe I had menieres. I will tell you the difference. With menieres you get extreme spinning vertigo episodes that can last an hour to many hours and then go away and you will feel fine. With VN or Labs, it is a progression of symptoms that stick around all day! Here are some of them: a feeling of extreme lightheadedness, panic attacks, anxiety, heart racing, a sensation of rocking on a boat (all day), feeling like the floor is moving under your feet when you walk, head pressure, ringing, crackling, fullness in your ears, nausea, vomiting, unable to watch TV or go on the computer without feeling like throwing up, sensitivity to lights, anyone else what to add to the list? LOL Antivert worked for me, but it did make me tired. I am telling you all that Xanax worked way better for so many reasons. It eliminated my anxiety and it eased the awful symptoms. Keep the faith!! Melissa |
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Thanks Brad and Melissa, I'm entering my 5th month of near constant symptoms, so I'm hoping the VRT can help. It's distracting trying to use a computer all day when I have rocking sensation. I haven't had issues with lights or TV, but everything else sounds about right. The VRT guy is thinking Labs, maybe with BPPV based on my symptoms and history. Maybe a diagnosis is in my near future! jen |
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Hi all Well I am still having my relapse. Been so totally fatigued, woozy and have had aching pain in what seems to be the glands of my head and neck although they dont seem to be swollen. I am now off work because I think if I keep going in like this it will just get worse. I went to see my VRT therapist yesterday who says balance wise there is not a lot more she can do as it is just the same exercises for me to keep doing but on hearing my current symptoms and how badly fatigued I get every day she has mentioned Chronic Fatigue. She is going to refer me to her colleague who treats people with CFS to see if she can help me. Whilst I still firmly believe I have a vestibular disorder I am sure it overlaps with the symptoms of Chronic fatigue and I have been pushing myself for so long to go to work each day it is such a battle. I literally get home from work and have to lie on the sofa all night because I am so woozy and exhausted. Do other people feel like this or those of you who don't work, if you did, do you think it would make you feel like this? I worry so much about taking time off work and also getting sick notes from the doctor, losing money which I need to pay the bills etc. How does everyone else manage? Brad sounds like your treatment for Lyme is quite intensive? are you able to keep working or will you need time off? Hope it all goes ok... How is everyone else xx |
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Hi, Well it is raining here in the North East and I feel a bit swirly headed. I should NEVER have written that I was 100% better. I think I put the whammy on myself! LOL I'm trying to just ride this one out and not panic. I've been so good now for months. I'm wondering if maybe I'm over doing it at the gym?! I have been taking a class where we use weights. I never lift anything over 5lbs over my head. Maybe my muscles are spasming and pushing on the bulging discs in my neck. Just theories. How is everyone else? Melissa |
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I'm glad you did that list Melissa and included panic attacks and axiety as I am suffering big time with this at the moment. My other symptoms have improved immensely but the anxiety is getting worse. I'm thinking of going to the doctor for some help with it even though I really really don't want to take medication but I'm starting to think there isnt any other way out of this. |
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Hi all, I posted and don't see it here. So here it goes again. I just spent the last two days actually quite dizzy! I put the whammy on myself when I said that I was 100% better. LOL It was raining and a bit muggy and cold here over the last two days. Does anyone else feel off and swirly headed when it rains? It is strange because I've been fine on other rainy days. Again who the hell knows what triggers this!! As long as I am better today now that the sun is out. I'm crossing my fingers. I don't see anyone else's posts on here either. So I can't comment. Melissa |
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Hey Sharp blue i haven’t posted in a few months but ill give you an update on my condition. I saw one of the Top neurologists in Australia with more degrees to his name then anything ive ever seen and he diagnosed me with psychological swaying :( i was disappointed to say the least because unfortunately I’ve got a history of severe anxiety before i even got this terrible VL. My first ENT diagnosed me with VL 2 days after the attack, So i have been seeing a psychologist who keeps saying the swaying is all in my head that makes me feel crazy, yet i sway 24/7 when relaxed when happy when depressed when worried when not worried lol, it never gets any worse but slowly gets better. Im still convinced its VL and I’m doing my own balance exercises (VRT) and exercising 4x a week at gym I admit I’ve had some up and downs lately very depressive thoughts almost suicidal ;/ because theres no way out of this condition except time when you feel so horrible but slowly i believe im getting better I’m at 5 months 3 weeks now. Ive worked and done University since the VL first day so it hasnt been debilitating enough that i cant do my normal routine but it has made things extremely miserable ive been living life, not enjoying it and my social life has suffered. In regards to my symptoms -tinnitus / fullness muffled hearing – GONE Sensitivity to light- Slight Lightheadedness and general weird head feeling- Gone Swaying- Still with me( the symptom I hate) Balance- Constantly improving Im at 85-95% if the swaying was gone i hope it will stop soon :( |
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Hi everyone, Well, had appointments with the VRT therapist and the neurologist this week. VRT physio said that my neck seemed fine, what she is sensing is that a lot of my symptoms are stress related!! The cause for all my muscle spasm and head tightness is not because I am a nervy person per se, but it is an involuntary reaction to the body not working properly. All very well I said, and can understand that, but how the hell do I deal with all this to get rid of it!! Relaxation techniques, medication and to keep with the VRT exercises plus she thinks to see a councillor or Cognitive Behavioural Therapist. Do you know, I, before all this was a normal, happy go lucky person living a normal life without a second thought. Never have I been over duly stressed to this point and have always considered myself strong in times of adversity. Where the hell have I got to to put myself in all this mess. Am I really that unstable to need CBT or counseling?!!! Anyway, saw the neurologist, discussed the Prof Linda Luxon clinic. He said he will support me to go there to what he called 'the Oracle" if i felt I needed more definite answers. He thinks with the right medication (has changed my anti stress meds AGAIN) it is a matter of common sense, not doing too much, relaxing, dealing with each day as it comes and patience! So, feeling a bit better than last week, but still woozy headed, headaches, stiff neck etc etc. and hunting out where in my body I have reserves of 'patience' left to deal with all this. Hope you are all doing better and not stuck in a whirlpool of sameness as I am at present! Love & hugs, Gloria xx |
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Melissa, Just seen the picture of Meaghan - she looks so beautiful in her Communion dress. What a lovely daughter you have Melissa, you must be so proud. Hope you are continuing to do well? Hugs, Gloria xx |
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hi all Well i posted a few days ago but it hasnt made it on here yet. I am not doing well at all. I have reached the point of total physical collapse and am now off work. i am absolutely exhausted and have just had to lie down and take total rest. My vrt therapist has mentioned Chronic fatigue so now whilst I am still convinced I have a vestibular disorder due to the dizziness and ear symptoms, I am wondering about that. Gloria I am sure our symptoms are physical and not psychological but the danger is when the doctors cant explain the symptoms they start to put it down to our minds. I am seriously worried about my ability to keep working because at the moment I cant do anything. I wondered if any of you who dont work are able to claim any benefits and do you get sick notes from the doctor etc? I did not think 13 months in I would still be suffering so badly but maybe I have pushed myself too hard and now I am paying the price! Jemma xx |
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Hi All Gloria I know what you mean about how this thing has changed you, i too was a happy go lucky energetic busy Mum minding my own business & getting on with life. I just want to be normal again!!! Have been to the Gym 3 times this week just to feel 'normal' again. I am better in the mornings with this 'thing' so do all I have to do then usually crash by evening. Have my VRT appt on May 25th so hoping this may help alot. You must be at the end of your tether after having this for so long I am struggling after 3 1/2 months!!! Am attempting a day trip to London to celebrate my best friends 40th Birthday on Sunday. Another attempt at just being 'normal'. My 30th in July & I am desperate to be free of this 'thing' by then. Gloria good luck with everything & really hope you start to see some changes soon. Claire x |
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sorry me again Does anyone else have shakey legs or like loads of muscle twitches going on in them. Reaso I went back to the gym was to strengthen my legs to see if it stops this annoyance. Almost like my legs are dizzy too!!! Claire |
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Gloria, I wouldn't see the need for CBT as a sign of your being "unstable" by any means - Illness of any kind is about the biggest cause of stress you can get. I'm very much in the same boat here.. I've always been a bit of a worrier, but my current situation has sent my stress and worry levels and anxiety through the roof, to the point where I'm also suspecting that I'm actually hampering my own recovery to some degree. Funnily enough, along those exact lines I had an appointment with my GP today - He's prescribed me a low dose of amitriptyline to see if I can get back into a stable sleeping pattern and also to take the edge off my stress and worry. First dose is tonight so I suppose I'll have to see how it goes! |
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Gloria, Thanks for the compliment on my daughter. I am very proud of both my kids. As for the stress and anxiety causing neck issues. Well duh!!! I'd love to see some of these doctors and PT's deal with this day in and day out and not show some signs of stress. Why does your doc keep changing your medicine? Doesn't the meds he gave you first help to keep the anxiety at bay? Thank god for modern medicine. I would be a basket case if I weren't on Zoloft right now. I like you was happy go lucky without a care in the world. Then labs hit! So I have been swirly headed and fun house floor feeling now for three days. Ever since I gave myself the whammy on here and said I was 100% better. I can't explain why after months of being symptom free, I am now being hit by this crap again. Needless to say it is trying at the least. I can't seem to pinpoint what is causing it, so I can't really do anything to solve it either. Usually it's a cold or congestion that causes me to feel off. I don't have a cold or congestion nor have I had a cold in over two months. Weird! Just plain weird! I just pray it doesn't last a long time. Keeping the faith, Melissa |
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Hi Gloria - my last post went astray but I was saying exactly the same thing. How on earth have I got myself in this mess of stress and anxiety. Just like you I was a strong person, and was always the helper and sorter-outer of all situations, always had a solution to everything. Now I am a wreck, even though my symptoms are so much better I am left with extreme anxiety and can't see a way out. I am waiting to see a councellor but you know what the NHS is like and I am having to wait 8-10 weeks before I can see someone. They reckon it will be the middle of June. I did go to see my doctor and I sat in her office cryng and she ended up giving me anti-depressant tablets but on coming home and reading reviews about them I decided not to take them. Instead I have purchased a book from Amazon on how to beat anxiety and am going to read that instead. I don't feel I am depressed just anxious. I fear the feeling of fear. My rational mind says "pull yourself together" but its like I have the devil on my shoulder saying "be afraid, be very afraid". I know this is another part of this thing. Ho hum. Kisses Shirley x |
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Where is everyone? Well, had an off day, BUT, this evening had 5, or thereabouts, whole minutes of feeling sort of normal?!!!!!!!! The first time I have felt like that in 11 months. So I suppose I must be grateful for that. So hope I have another 5 minutes tomorrow - don't want to be greedy now do I!!!!!! Melissa/Jemma - how are you both doing? Hope your blips are mini ones. Hope to hear how you are all doing soon. Take care Love, Gloria xx |
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Gloria, I've posted several times and they aren't showing up. I'm much better today. I think it was weather related. Just slightly swirly, but nothing like the last few days. |
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Hi all I have just joined Facebook as I think some of my posts went astray and I believe on Facebook they come through instantly. I am having a really bad time at the moment. Since last week when I got unduly stressed and tried to do too much at work I seem to have had a massive relapse. It isn't so much that the dizzines has gone worse apart from a few brief episodes in the night and on waking but I am totally exhausted. I have not been to work since last weds and I have been in bed most of the time and not left the house. I saw my VRT therapist last tues and she mentioned Chronic Fatigue because I am so tired all the time. She said there is not a lot more she can do so she is referring me to a colleague who helps people with Chronic Fatigue. Whilst I still am certain I have a vestibular disorder due to the dizziness and ear symptoms, I am now worried I have given myself Chronic Fatigue by pushing myself to keep working all this time. My head and neck (lymph glands) are hurting and I feel woozy. I dont have any flu symptoms so I must be just totally exhausted. Tiredness has always been a part of this disorder though so I am not sure. Gloria I do not believe your symptoms are due to nerves and anxiety because they are similar to mine in many respects and I know mine are not psychological, they are very real. I think when doctors cant explain something they like to make out it is in our minds and we are making it worse by worrying etc. I was fine like you until this sudenly came upon me and then I have never been right since. It is 13 months now and it is hard to keep up the hope! Jemma x |
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I’m sorry that some comments have been delayed. I’m supposed to get an automatic email notification of new comments but I’ve just discovered that I haven’t been receiving them over the past three or four days. I’ve just published all pending comments and I’ll go back to manually checking a few times each day. |
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Jemma, Amen to you! We are not all nervous basket cases. We have labs and that had directly affected our vestibular nerve. Which by the way, controls your serotonin levels. So if the nerve that controls our serotonin levels goes on the fritz, guess what we are going to have major ANXIETY! Why don't these dumb ass doctors get it?! Shirley, I had three GP's prescribe antidepressants last summer. I have to say that I fought it big time. In the end the anxiety from labs just took over my life. So I gave in and began Zoloft. It saved my life! It eliminated all the anxiety that labs was causing. I just had a three day bout of symptoms and if I wasn't on Zoloft I would have freaked out!!! I was calm and just told myself to ride it out. Also the antidepressant can heal the nerve damage by getting the serotonin levels back to normal. Serotonin itself can help heal the nerve that was damaged. Try not to look at the websites that tell you all sorts of scary things about them. I swear to you that I have absolutely NO side effects!! Thank God for modern medicine is my mantra. LOL Gloria, yeah 5 minutes!!! Now maybe you will get 5 minutes a day. This means that you are getting better! You know with labs that you have to take anything positive as a sign of healing. As for me, well yesterday was way better than the last few days. The weather has improved and the humidity is gone. I am screwed if this is weather related. It is hot and humid here all summer. I too get so exhausted when the symptoms come. I had to lay down and just take a quick nap for the three days this hit me. Keep the faith!! Melissa |
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Hi all, Great to hear from everyone, but sorry to hear of all this nightmare anxiety we seem to have. Jemma - I am sending you a big hug because you sound more miserable and down than I do. Replied to your Facebook request - didn't realise it was you, but it is quicker to get stuff on here. It is so difficult, words cannot describe just how much energy we need with this monster. When you tell people what you have 1) they don't believe you can have something that lasts so long 2) don't believe you because we all look fairly well 3) that it has to be something else, because tiredness, especially, means maybe you are anaemic or have another horrible gremlin blah blah blah!! I don't tell people what I have now - unless they are close friends and already know. Jemma - try to get signed off work for a couple of weeks - you do get sick pay. If you are on a full-time PAYE contract you get paid automatically. Go and get some good vitamins. I take Berocca (for me I have the soluble tablets) with a vit B100 capsule from Solgar vitamins. I stopped taking it for a while and I'm wondering if that is why I have gone back and also feel really energy-less. Also, do talk to your doctor about getting some anti-anxiety tablets. Just to help you through. Andy - are you on 10mg Amitriptyline? My neurologist has just changed me to Nortriptyline which is the same but not so sedating. I found Amitriptyline slowed everything down too much including my digestion - felt really sluggish. So far this seems OK - not taken enough yet to help with the anxiety issues though. Melissa - well my 5 minutes of pure heaven yesterday was short lived - back to our 'normal' today! Glad you are getting over your blip. Let's hope you get back to 100% in no time. Shirley - do you still get dizzy or swirly-headed? I think I could cope a bit better if my head wasn't so 'off' all the time. Then if it wasn't I probably wouldn't have the anxiety stuff. Oh, I don't know anything anymore with this. I just seem to go over and over all my symptoms time and again analysing and re-analysing. Claire - hope you have had a good day in London today? How did you manage. The shaky legs thing is all part of how our muscles react to a wrongly tuned inner ear mechanism. That goes hand in hand with the eyes and muscles - so all connected! Anyway, I shall plod on and wait to see if I get anywhere with my doctor's referral to the specialist clinic in London as they will do all the other ear tests (probably too late by now) but will also help sort out my CBT - if I still need it! More like someone coming in a little white coat to take me away I think LOL!!!!! Love and big hugs, Gloria xx |
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Hi I have missed everyones' comments these last few days but I think Rich had a problem with the system approving messages. Gloria thanks for your message. I can honestly say I have never been so tired in my life. I literally do one thing and have to lie down for ages and I just want to sleep forever, its like my brain has totally given up. I have had tiredness all through this but never to this degree and of course like you say other than close family nobody can understand, they think its down to diet and exercise etc and dont understand what this disorder does to you. I am off work at the moment and have pretty much decided that I cannot go on like this anymore so I am considering the possibility of leaving. My mum and my partner can see how ill I am and agree that I need time out. I may have to try and do something from home when I feel up to it because i have a feeling this is going to be a long term thing. When I have my make up on I don't look too bad but without I can see how pale and drained I am plus the weight loss means I look terrible and feel it too. Thankfully I havent been as anxious and depressed as I was when this started, I just feel totslly shattered and want to rest but I have almost reached a resigned acceptance of the illness now. Is anyone watching Over the Rainbow? xx |
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Hi Jemma, I, too missed everyone. This site is my 'security blanket'. I know what you mean about having a resigned acceptance of this. I realise that this is not going to leave me within a few days or weeks. Whilst the neurologist said 2 years at the most, but having felt so rough again lately, I even doubt that. I dread waking up in the morning, knowing that I feel no different. The mornings are always the worst for me. I get a bit better in the afternoon and then feel really off again just before bed-time. These days that is between 9-10pm. I don't know how it works where you are, but can't you ask them for a period of 1,2,3 months, whatever, unpaid leave rather than resigning? Speak to your doctor, but you maybe able to get Incapacity benefit as you are not fit for work. At the moment, for me, I still have swirly headiness, but it is the anxiety thing that I didn't have that bad at the beginning, but has gradually built up. Do you still feel giddy? Yes, watching Over the Rainbow - who do you want to win? I like Rachel (red-haired girl?) ,but think she needs to be more extrovert if you know what I mean. Also been following American Idol and Britain's Got Talent - very educational stuff!!! That is really my height of entertainment at the moment. Can't wait for the weather to be a bit hotter as can get out into our garden. Do you have a garden Jemma? Warmer weather just might make us feel a bit better. Let us know how you are getting on. Love & hugs, Gloria x |
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Gloria - Yep, just 10mg, although the doctor has said I can up it to 20mg if I feel the need. So far I haven't had any issues with feeling sluggish - I take it an hour before bed so its sedative effects just help me sleep somewhat and seem to have pretty much worn off by the morning. |
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hi Gloria I like the red haired girl too, I think it's sophie not rachel. She has such a lovely face and seems to fit the part really well although like you say a bit shy sometimes. I do have a small garden gloria and we have 5 hens. They are so cute but always hungry! Luckily my anxiety touch wood has been ok recently but as I say just so tired and woozy headed. i have pains in my head , round the back and down my neck and I seem to be waking every day with headache. Do you still get tinnitus? As for work - do you get incapacity benefit gloria or did you just leave and that's it. I am going to the doctors this week to get signed off but I am more and more thinking about lifestyle changes to adapt to my health problems and working from home would be a better solution for me if I can sort it out. How is everyone else? xx |
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Hi all Gloria I did make it to london for the day not easy being on a 2 hour journey (twice) I am not good at travelling far as i feel so dizzy & woozy for so long after each journey. Stuck to water all day (very boring) managed 2 sips of champagne & it went straight to my head.i was on Amitriptyline just before all this started for another health worry I actually thought it caused all this so weaned myself off it & am determined to try & be pill free, not easy though especially when docs try so hard to get you to take it, only takes a moment of desperation to give in. I have been tempted!!! Jemma have read your comments sorry you feel so bad I have had all those feelings too am so glad that i dont work at the moment as i know i couldnt. I have been forcing myself to the gym just to use some energy & thought that the movement & focus might help the dizziness. Am whacked out after though. I find late afternoon & eves my worst time so do all I can in the morning. Melissa you have had this for so long I am trying not to think about how long as i imagined mine gone in after 4 months (2 weeks to go) i really hope its just a blip & will start to subside Still glad your all out there as i think we all need the support!! Claire x |
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Hi all, Andy - lucky you can take 10mg without any side effects. Even half a tablet would zonk me out at first. Anyway don't feel so bad on the Nortriptyline but if they haven't helped the anxiety bit after a week or two, then I might ask to go back on Amitriptyline. Hope you get good effect from them Andy. How are you at the moment? Jemma - the pains in the back of the head and neck are what I have had for some time now and the daily headache - varying degrees of intensity have also been there. And yes, still have the old tinnitus, although the ear fullness has calmed down a lot. I just think that there are a myriad of stages with this thing and whilst different for some people, there does seem to be a pattern of symptoms a lot of us share. Try and upload a pic of your chickens Jemma - they sound wonderful. Do you get lots of fresh eggs? I don't get benefit as a couple of years prior I took voluntary redundancy from my job because that was when my mum was very frail and not long after died, so I had tons on my plate and felt that would be a good option to take. Jemma I would get signed off first to think about your options before you make any final decisions. It might just mean a few weeks/month or two sabbatical is what you need. As you say, you have been working full on and trying to cope with this is just way too much. I find just getting out of bed, washing, dressing and doing a few chores is enough for me. I hate that though. I have always been a person to dash around and not think twice. Claire - glad you had a good week-end. Brave you. The thing with labs is that if possible to try and do things as normally as possible. That said, and what I have just told Jemma is true. A few weeks ago I was determined to try and live normally, visiting friends/relatives, entertaining etc and then WHAM, back down the ladder again. So, do a little of what you fancy as they say and then REST!! Lovely to hear from you all. Love, Gloria xx |
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Hey all, Jemma - I have been off work for over six months now and only get statutory sick pay, which is just under 80 pounds a week. Very hard to live on as I am on my own with a small mortgage but luckily I did have savings which have helped me through but of course they will not last forever so I really need to get back to work. As I have now been off work 28 weeks the SSP stops and I now have to apply for benefits. I did apply for the disability but got turned down twice and can now appeal. Not sure if I am going to bother as it does seem a waste of time. I think if you can afford to, or even if you cant, you best to rest as much as you can with this. I would find it really hard at the moment to get up early and go to work as the mornings are my worst time and the fatigue is at its worst. I did not take the anti-depresants that the doctor prescribed and to be honest, the anxiety has not been so bad these last couple of days, and I even drove to my local tesco on Friday and did a small shop. I just kept telling myself that if it got too much then I would just leave, even if I had a basket of shopping, and go back to my car where I feel safe and drive home. I'm just going to take it one day and a time and see how I go. Today I went to the hospital for the caloric test, which was not as bad as I thought it would be. I think a lot of my anxiety last week was worrying about the test. However, I ended up having the hot and cold water in my right ear 5 times as the first set didnt cause vertigo. They found that I had some loose skin covering the opening and I then had to have that sucked out and the test re-done. My poor ear is really sore now but hey ho, at least thats over and done with. I think if anyone is worried about having it done, don't be, I have experienced much worse vertigo in the early days of this thing. The test went well and the nurse said it showed my balance was normal, even though I did feel the vertigo stronger in my right ear than the left, but who knows. Gloria - yes I still get a bit swirly headed but really and truely I am much better. I did get a bit off balance on Sunday when I had the family round for dinner but this was because when I was in the kitchen I kept turning round for something. I also had a spin on Saturday when I was at a childrens birthday party, I was holding a 3 month old baby at the time and bent my head down to look at her and wham, dizzy and spinning. Luckily my daughter was sitting next to me and took the baby from me. I am now thinking the diagnosis that the doctor gave me of BPPV might be correct. I feel I have had labs but I now have a residual positional thing. Hopefully when I can get that sorted out I will be back to normal, fingers crossed. My visual dizziness seems to have sorted itself out as well. Shops don't seem to bother me now and I can drive .. YEAY :) Hope everyone is ok. Kisses Shirley |
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Claire, Well done braving London for a trip out with friends. I know I couldn't do that but glad you coped with it. Have you had all the balance tests etc? Good luck with your VRT. Gloria these head and neck pains are horrible. They built up in the week before i had to stop working and it hurts to turn my head and my neck feels stiff. There is a lingering headache too which subsides a bit then goes worse again. I also had some numbness in my right leg and terrible twitching in my right eye. I have looked it up and I think the pains sound like occipital neuralgia. Again i assume this is all linked to the vestibular nerve. I noticed that the treatments for occipital neuralgia are some of the medications you have mentioned above like Nortriptyline. Is this what the neurologist has said you may have? I just feel drained of all energy which as you say is probably down to trying to do too much (which in the normal scheme of things isnt much really) and stress of work. My body or rather head is telling me to take total rest so that is what i will have to do and try not feel guilty for it xx |
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Hi all, Well I have been fine for the past couple of days. Tonight I'm a slight bit swirly headed, but rain and humidity are on the horizon for tomorrow. If the rain and humidity are going to cause me such problems, I'm in for a hell of a bad summer. LOL Gloria and Jemma, I am always at my best in the morning and early afternoon. Somewhere around 4pm till evening is when I get slammed with symptoms. Hopefully tomorrow will be a better day. Melissa |
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Jemma - your head pains and neck stiffness are just identical. Also you are right about the occipital neuralgia. As the vestibular nerve is damaged and linked to all the other nerves and muscles the neurologist said that everything is a bit over-worked and tired hence why they react so violently. He first put me on an anti-epileptic drug called gabapentin which apparently is more commonly used now for neuropathic pain rather than epilepsy - according to the pharmacist. It was OK and did help but for me one of the side effects is that it makes you lightheaded and dizzy which is what I experienced. The amitriptyline/nortriptyline meds do have a good success rate. I decided to go back on amitriptyline as it did calm me down and helped me cope, but because I am so sensitive to drugs, I found it a bit too sedating and therefore, couldn't get up to the 20mg dose the neuro wanted me to. Not that I felt totally zonked out all day, but for me my digestion got all sluggish and I found it difficult to go to the loo (sorry, TMI!) Nortriptyline is less anticholigenic and not sedating, in fact I do find it a bit difficult to get to sleep, but will persevere as I so want to get something that is going to help me get through all this. Jemma - ask your doctor to try them. They take a couple of weeks to start getting into your system, but don't have anything too severe like the Prozac type meds (SSRIs) which I couldn't take at all. With this type of reaction, as the vestibular physio said, relax, relax, relax! Well such an easy word to say eh?! Melissa - glad you are feeling fine again. I remember someone telling me of a friend who had this and reacted just the same as you. The dizzy/woozy spells (after the first original onset gets better) just get less and less over time until you don't notice, and without the setbacks like you have just experienced, but it does take some months - as you and we all know only too well. Hang on in there. Sounds you are going along the right track! Shirley - you are going great guns! You have come along so fantastically well. I am very pleased for you. I am waiting, as I said previously to get my referral to get all the ear tests done - although probably they won't show anything now, but just need to get mine confirmed for a bit more for peace of mind (is that ever going to be possible after all this?!) Went to play a bit of knock about tennis last night with my hubby. OMG - I thought my head would burst, but have been told to try and build some very active stuff into my week. So will try again this week but I don't want it to set me back. Felt very swimmy headed after about 15 minutes and we gave up. We'll see what happens next time and if after a couple of weeks it has done some good. I am getting very fed up with the VRT stuff at home and am not sure if it is helping. Jemma are you still doing anything - did your wobble-board arrive? Hugs, Gloria xx |
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Hi Everyone: Sounds like it has been a bad week. Melissa..so sorry to hear of your bad few days. I hope you get better soon. You are nearly or are at your 1 year mark! Think of how far you have come! Jemma...very sad to hear of your relapse. I know I probably sound like a broken record, but whenever I hear of people saying "Chronic Fatigue" or Fibromyalgia I always think of Lyme disease. I have been spending more time on the Lyme boards than the Labs boards these last few weeks. I actually prefer this board, as the Lymies can be very depressing. But...I have met numerous people from the US and UK / EU who have Lyme and who were misdiagnosed for YEARS as having Chronic Fatigue, Menieres, STRESS / ANXIETY, psychosomatic disorder, etc, etc. If you have chronic fatigue, sweating, and other symptoms in addition to your vestibular, I strongly encourage you to find a LLMD (Lyme Literate MD) in your area and get an IGENEX western blot test. No other test for Lyme is as accurate. As for me...I've actually had a pretty good week all things considered. We went to my brother's college graduation way upstate in NY. 3 nights in a hotel with a 2 year old an 6 week old. 3 weeks ago I would not have thought I could have done this. But I was fine. Don't get me wrong...I still have symptoms. My ears still ring and feel very full. I also have random muscle aches in my back, legs, and jaw. But the vision / balance / labs symptoms are MUCH IMPROVED. I don't know if this is because I've been focusing more on Lyme and treatment than on Labs, or the fact that maybe treatment is working. All I know is, supermarkets are pretty normal. I can now look at the picket fence in my yard without it being bothersome. Busy environments are "normal" and not bothersome. Walking is "normal", not bouncy. The Lyme treatment is pretty intense. I just started a 3 day "pulse" of Flagyl, which is strong antibiotics. This is in addition to the 400mg of Doxycycline that I do every day. I have to stay out of the sun with the Doxy otherwise I can burn almost instantly. I've had to completely change my diet to eliminate sugar and most carbs as you have a risk of growing yeast when on long term antibiotics. No alcohol or caffiene either. So...again, not saying everyone here has Lyme. But if you do your research, you will see that the vast majority of chronic lyme patients were misdiagnosed with CFS, Fibromyalgia, MS, stress / anxiety for years / decades before getting proper treatment. May as well get it checked out to rule it out, but keep in mind the standard tests have a 50% false negative rate. I tested negative at first. Hope everyone has a good week. |
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hi all Gloria thanks for all the info and yes I am sure the pains we are getting in our heads are very similar. It is all nerve related isnt it. I am really reluctant to take medication because I too am so sensitive to any little thing. I am quite slight in my build so have always reacted to things quite quickly, half a glass of wine and I am drunk (not that I would be having that nowadays!) I would take something if I could be sure it would help and I have heard lots of people take amitripyline but it does not seem to be a quick fix cure. Interesting your physio said to relax because I am sure that doing too much and stress is what has caused this relapse for me. So I am just going to have to rest and hope it improves. I still do the same set of vrt exercises but not quite as intensively at the moment because i feel so bad. My wobble board never came so I bought a Cassall one from John Lewis which i do stand on for a bit each day. My mum had a go on it and she was falling off it, she thought i was amazing on it and my balance was brilliant - so weird isnt it!! I have not tried tennis - ahhh scary! but i do want to try doing some walks again once my energy levels increase. I haven't been out of the house for a week now. Shirley - glad you are so much better. As usual your tests were normal but we all know that doesnt mean anything. Hope you keep on the up. Melissa - you keep getting this swirly head dont you but at least it only lasts a short time then goes. i am sure you are in the home straight now! Speak soon xx |
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Gloria, you have a wonderful husband. He seems so supportive and helpful during all this. It's raining here and I feel fine so far. Of course I usually feel fine in the am. I'm just hopeful it stays at bay. Melissa |
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Well spoke too soon, feeling really off today. My sinuses seem inflamed and I feel like I have a cold, although my nose is not running. I am wondering if its the caloric test that I had done yesterday, they did put the water in one of my ears 5 times and that ear is very painful today. Fingers crossed this wont last. Hope everyone else is ok. Shirley x |
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Hi all Thanks Gloria for explaining how to do this via Facebook. Well done for the tennis at least you tried it!! Jemma I did manage to have quite a nice day out on Sunday wasnt easy as having lots of conversations & lots of head turning - you all know how that feels! Glad i went as it was my oldest friends 40th & we have been friends since we were 5 so quite an emotional day- just dizzy. Have started getting dreadful pains in left ear & down the jaw line also hurts my jaw when i yawn not sure if it is yet another sympton (1 of so many)of maybe an ear infection will see how it goes. Still dizzy & buzzy. Has anyone tried hypnotherapy for the anxiety i have had one session & listen to a cd too. Plan to have another one soon will let you know how it goes Anyway hope you are all doing as okay as is possible Claire x |
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Well i went to the doctors and as usual what a waste of time. They basically asked me a few questions and what I wanted them to do for me given that I had been told I have a vestibular disorder. I explained how tired I was and about the head pains. Was told i may have a minor viral infection as my temperature was slightly high. she signed me off for 1 week and that was it. I have already been off a week and am no better and I know if I go back to work I will just collapse. I dont know how people get signed off for longer because it is like every time I have been to the doctors you have to practically beg to be signed off for one week and that means going back every week to beg again. It is so stressful in itself. Is anyone else in this position? xx |
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Shirley, no doubt the water they put in your ears threw you off. I remember last year when I was about 4 month into this crap, I went in the ocean. I got water in my ears and I was in a bad way for a while after that. The ENT told me not to get water in my ears and to use wax if I swim. LOL I haven't allowed one drop of water into my ears since. Maybe that is gross...LOL Claire, it is a bit easier to post when you go through Facebook. Good for you getting out and seeing friends. That always made me feel so much better emotionally, not physically. I tried the hypnotherapy and cognitive behavioral therapy. It didn't work. I think that it didn't work because the reality of the anxiety I had was that it was caused by nerve damage and not because of a problem in my life. It was impossible for me to just relax about it. The nerve in my ear wouldn't allow it! LOL I had to take an SSRI. It was the only thing that worked for me. Jemma, as for sick leave, in the US we can take six months sick leave. We would only get paid 25% of our salary though. You do need a doctors note. However, the doctors would not give a hard time signing anyone out for a vestibular issue. Gloria, hi I hope you have a good day today. Or shall I say, hope you had a great day today, as I believe you are six hours ahead of me. Melissa |
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Jemma - unless you look a physical wreck or have something doctors actually know about - it is a struggle. I found the same with my doctor when I went to ask for a referral to Prof Luxon. I am sure because I looked OK, she thought I was being a hypochondriac and panicking over nothing. Oh - not that I would wish this on my worst enemy, but just sometimes you would like them to have a little shot at this nightmare. Can you approach your employer direct to ask for time out, or, I would ring and make a longer appointment with your doctor and take your boyfriend or your mum to say you want to discuss your situation in more depth and ask for a second opinion. I would also have the affront to ask them if they do understand that fatigue and anxiety are some of the main symptoms of having a vestibular disorder. I so feel for you Jemma, as you say it is enough having this thing let alone having to deal with non-understanding GPs! Don't give in. Claire - hope you are coping ok. The number of pains and aches I have had with this are incredible - in odd places that you just don't think are connected. My tennis has given me a headache from hell and think that may have been too enthusiastic. My head/balance clearly wondered what the hell was going on. So gentle bike ride tonight. Melissa - have been having a couple more brief normal glimpses. Generally in the evening - but still too short lived to get really excited. Are you back to a good patch now? (Love the photo again!!) Shirley - hope you too hare settling down. Mind you, like Melissa has said, yesterday it was bright and sunny here and I felt a little better. Today it is cloudy and stormy and I don't feel so good. So change of weather pressure does have an effect I'm sure. Take care all Love & hugs, Gloria xx |
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Hi Everyone Thanks for the facebook 'friend' adds dont worry i wont post anything on anyones walls about this horrible condition as i am sure you all like to keep some parts of life 'lab free' like i do. I am stuck at home with my 10 year old today she has a rotten cold & I am so worried I may fall prey to it as well, last time i had a cold it set everything off ten fold!!! I have been trawling through old posts on this site (makes me a little woozy). Makes me realise how awful it has been for all of you & how long you have had it. I have been thinking this week that I may have improved (very) slightly. I have managed the supermarket a couple of times without feeling I need to desert my trolley & head back to the car. Have had a stiff neck & neck pain which spread to my jaw but that now seems to be subsiding. Still getting the strange shaky feeling mostly in my left leg but sometimes my whole body feels like it's zapping. Another major breakthrough has been going back to only one pillow in bed!!! I dont want to speak too soon but I am feeling more positive after 4 months. Looking forward to VRT next week hoping they may be more understanding than the Docs & ENT people. Have learned one thing from this site & that's the fact that everyone on here has more knowledge to offer than any medical assesment I've recieved so far! Decided yesterday to start making plans for my 40th in July, something I couldnt even consider a couple of months ago. I hope that everyone is having a better day & the sun is shining here hope you all have a bit of sunshine too Claire x |
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Well my cold symptoms have turned into a fall blown cold and I have been feeling rough these past couple of days. It is strange how the sore throat and sinus pain came on just after having the caloric test .. I am wondering if they are related ?? Anyhow the good news is I don't feel anymore dizzy than usual, in fact I just feel the normal unwell feeling that colds and flu normally feel like. I have been blowing my nose like crazy today and feel really bunged up .. this will be the 3rd cold I have had since having this thing .. before this I hadn't had a cold in 3 years. Claire I am wondering how your hypnotherapy went, I am visiting one tomorrow for a consultation to see whether she can help me with my anxiety. I have to drive for about half and hour to get to her, which will be the furthest I have driven on my own since getting this thing. I am hoping I will be able to get there before the anxiety hits. Gloria - Thank you for asking about me .. I really hope you start getting some longer times of feeling normal .. you certainly don't deserve to feel like you do x Take care everyone, they say its going to be a hot weekend, hopefully this will make us all feel better xx |
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Gloria Hope your headache is better I get horrendous headaches at the end of a day if I've done too much or have been in a car alot & extra dizzy. Maybe a gentle bike ride is a better idea. Shirley Good luck with the hypno you have nothing to lose. My sister has also been to see a hypnotherapist for anxiety issues & have helped her no end. As i have only been once I dont feel i can say that its the answer but it certainly helped me although I actually went before all the dizzines started so have been waiting for it to subside before i go again!!!!! Jemma I think Glorias advice is good about getting someone to come with you to a docs appt. My husband came with me just to back me up as whenever I went I felt that I was just being fobbed off as a neurotic woman! Melissa Hi hope you are feeling a little better. It definately helps to go out & do normal things from time to time emotionally shame it doesnt help physically too though! :) Anyway enjoy the weather everyone Claire x |
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Hi all, YES, I am feeling 100% better!! Not sure what threw me last week, but if it is short lived I can deal with it. Thank you all so much for asking! You are all such an amazing support system. We may need to fly to a destination to have a Sharp Blue conference! LOL Gloria, YEAH!! Even just a few mins of peace means you are on your way to healing. I'm so glad for you. Gotta run Melissa |
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Hi all Well I am still really tired and keep getting these horrible pains in my head. i tried a valium yesterday and it seemed to help relax the muscles a bit but I know you can't take these regularly. I may have to go back to the docs again next week and as you all say try and make them take me more seriously. Its a tough job though as we all know. Has anyone on here actually had the caloric/vestibular tests and it showed there was something wrong? Gloria how are you? A bike ride is brave, hope it went ok. I think like you say anything which requires a lot of concentration or activity can just set us backwards again, so frustrating, but we have to keep trying dont we. Claire have you started your VRT yet? is it on the NHS? Melissa hope you are well. Sandie, Susanne, DC, Andy, Gary - how are you? Take care xx |
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Hi everyone, Well, my few glimpses of wellness have definitely ceased. Today feel so swirly headed and like you Jemma have the strangest pains again on top of my head. Clearly I am sure it is all to do with nerve damage and it seems like you and I probably have got quite a bit! I've gone back to taking a herbal product that I mentioned on here way back. It is called Valerina Day time stress relief. Basically, it is the herbal valerian plus lemon balm. It is made by a company called Pharbio. Boots do them or any large health shop. I find that helps a bit and is better than Valium because as you say it is not a good idea to take them ongoing although after all this time Jemma will it make a huge difference? I will call my doctors surgery next week to see if they have had any luck with my referral to Prof Linda Luxon's clinic on the NHS. Bet they haven't and lit looks like I am going to have to call on the goodwill of my mum-in-law to finance it for me. I need to get some answers. Do you still feel woozy headed and have you had a day where you haven't had any symptoms at all? I haven't, which scares me. Jemma - I booked a double appointment with my doctor and took my hubby with me. I think that made her realise I wanted something sorted out. Melissa - so glad you are back to your 100%. Love the idea about a Sharp Blue conference, but not sure about the flying just yet! Take care, Gloria xx |
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Hi again, Jemma - I continue to be doing quite well. I definitely need to know my limits though. This past weekend I was at 2 bridal showers for my future daughter in law, and all that social interaction made me much more dizzy than usual. Also, I have done a little more gardening, but I keep it down to under half an hour as too much exertion causes weakness, tiredness and emotionally drained. I know, sounds silly, doesn't it? We're off to New York City this weekend. I am looking forward to it and hope my stamina keeps up. |
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hi susanne glad you are still improving and able to do more. hope you have a nice time in new york and feel well! Gloria - i still have this chronic headache/pain. It is usually one one side at the back of my head mainly the left and i just wake up with it and it doesnt go away. It seems to fit the description of a tension headache but I am not certain. Painkillers dont touch it. The only thing that helps is valium but it does make you feel drowsy and spaced out so its a catch 22. Do you find that the amitriptyline and similar meds help to relieve your head pain? Also, can you only get prescribed this by a neurologist or can the gp help? I am trying to enjoy the hot weather but not able to do a lot. How is everyone? xx |
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Went to see my GP on Friday to get another sick certificate, she asked me about the anti-depressants that I had been prescribed and wanted to assess me so she asked a number of questions and said I had scored 7 out of 27 which meant that I was only slightly depressed and she put this down to the illness (no sh*t Sherlock!!). I told her that I had not taken any so far and that I was waiting to go to CBT. She said that the ones that I had been given were very mild and a lot of people had benefited from them, and if I needed them later on to take them. Anyhow she signed me off for another 6 weeks and fingers crossed I will be able to get back to work before then. How have I been? Well if I had wrote this yesterday I would have said that I have been really good, considering I have a really bad cold and it being TOTM (sorry if TMI)but today I woke up feeling really off balance, not necessarily dizzy but off balance with a painful ear and tight band headache. Also feeling really fatigued. I am wondering if the cold has gone to my ears as they do feel quite painful. I really hope this doesn't last as I had been hoping to get back to work next month. I am not sure if this weather is helping either, although I was ok with it yesterday ?? Hope everyone else is enjoying this lovely weather. |
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Jemma, Try taking Xanax. It has a quicker time in and out and doesn't make you feel doped up. Everytime I feel really off, I take a .25 of Xanax. It is a muscle relaxant and it absolutely stops the dizzies. Gloria, I'm sorry that you are feeling so crappy. I do hope that you see some better days. I think you just have to keep digging for some sort of an answer as to why you aren't recovering quicker. Keep the faith Gloria.. Love, Melissa |
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Hi all, Well all things considered I have had a better week-end. Not so dizzy, but that may be because the weather over here was so beautiful, my hubby and I spent most of the week-end in the countryside - watching his favourite cricket, but although I find the game so s-l-o-w, it is quintessentially English and to relax with a picnic and chill was lovely. Interestingly, I spoke with a young woman (35/36). She was at my neighbour's little boy's birthday party. About 9 years ago she had labs - prolonged like most of us. She was so passionate about me meeting her for a chat because she so knew what all this rubbish feels like and trying to convince the doctors that there is something wrong and you are not going mad when still suffering after the usual few weeks that most doctors say you have labs for. She did say that it did take her nearly 2 years before she said she was better! However, between the first and second year she said she did feel more normal and able to cope than the first. She didn't wake up and it was all gone - it faded over time. Although she is absolutely fine now, she did say that at certain times she still does get a little return to how she felt, but nowhere near as bad and even talking to me about it again said she could easily bring on the anxiety feelings again etc. So, we'll see. Whilst it did give me some comfort - I also was a bit taken aback about how it seems, to some degree, be with you almost forever, albeit very very mild. Jemma - the head pain I am sure is part of the fact the nerve is damaged and healing - bit like post neuropathic pain people get after shingles etc. Mine is at the back of the head and at the base adjoining the brainstem, but then as Shirley mentioned I also get the tight band headache, which doctors all say is a tension headache. Again, that is may be, but has to be brought on by the mixed messages the brain is receiving from the muscles. Ibuprofen helped a bit and the valium herbal thing I mentioned last. Amitriptyline did help not only make me feel more able to cope but did help with the pain - not so that it went, but reduced it. Your doctor can prescribe it for you Jemma - ask when you go and have your chat. How is it that Shirley's doctor signed her off for 6 weeks at a time - I would mention that to your GP! Less dizzy, but have full ear again (AAAARRRRGH!) think it may be a bit of an infection but also really raging high pitched tinnitus which is driving me mad. Will there ever be a time again where I feel completely well without SOMETHING!!!! Anyway, grateful for a bit more sort of normality over the week-end. Just would love it all to go away - for all of us - AMEN! Love & hugs to everyone, Gloria xx |
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It's been a busy time for me in recent days - On Thursday I finally had my MRI, which wasn't as horrible as I thought it might have been. Just waiting on the results of that now. Then on Friday and Saturday I was up in London, which was great! I felt brilliant on the train, walking around London was fine and the movies were fantastic - I barely felt any moments of dizziness at all apart from a little bit back at my hotel room on Friday night. I actually think the whole thing has done me a lot of good, it's given me renewed confidence that I'm capable of doing stuff without having to worry about my symptoms, and right now I'm not feeling too shabby at all. A good job too, as this Saturday I'm off to London again! This time around it's a big trade show kind of thing which will be packed out with people, noise and TV screens! It's going to be another big test for me, but right now I feel confident I handle it no problems. |
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hi everyone Gloria, must have felt good to be able to talk to someone who knows what you are going through & who has come out the other side. Shame it took her so long though it really seems like something you just cant shake off, got to be one of the worst conditions with regards to the fact there is no magic pill to help you along. What is it with all the different daily symptoms? Why are no two days ever the same? Hope your ears are settling today. I had an amazing day yesterday spent in the garden weeding/relaxing & 'BBQing'. i didnt feel dizzy all day I couldnt believe it. So then why in the evening after such a good day did i have the most awful anxiety symptoms? My heart was racing & then kept fluttering with an abnormal rythmn made me feel so unwell. Still wasnt dizzy though which was wierd! Have got my appt tomorrow with a clinical scientist to sort out my VRT. Jemma you asked if its NHS but i had a private referral originally for ENT so carried on thru the system although I can only have so much as my policy only allows £1,000 including consultants fees!! Luckily MRI wasnt included in that. Shirley how did the hypno go? I know what you mean about TOTM I am always so much worse for about a week before & during. Anyway love to you all. Claire |
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Well my headaches seem to be here to say. I woke up at 5am with a dreadful migraine which actually made me be sick. It was throbbing so badly, just awful. Today i feel drained again and whilst the migraine is gone the chronic head pains are still lurking there. I have booked another doctors apt for tomorrow to see if they can give me anything for the headaches. I did not have these at first so I dont know why I am getting them now. Claire you are so right every day is different, new symptoms, changes in symptoms it is so frustrating. Gloria thanks for sharing about the lady's story, it is nice to hear about someone recovering from this. My dizziness has not been too terrible recently but the head pain and fatigue makes you feel so woozy anyway. I found a really useful website www.balancesolutions.co.uk - it has a self assessment questionnaire which I did and was told I had vestibular neuritis. It then gave a really detailed description of the causes and symptoms etc. It did say chronic dizziness can last for days, months, years or even a lifetime so that was a bit worrying. Shirley how does your doctor sign you off for 6 weeks at a time. Mine will barely do one week. Is it because you are on meds for depression. I really must look into getting something as it may help the headaches. Take care all xx |
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sorry I meant www.balancesolutions.com it is a usa website |
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Hi All: Just an update. I'm 2 weeks into my Lyme treatment. I'm on 400mg of Doxycycline and 1000mg's of Flagyl to burst the cyst form of the disease. My Lyme doctor did say I had Labyrinthitis...but it was caused by Lyme. So...I have a reason to be here...LOL! Overall, my Labs is a lot better than in previous weeks. The vision is a lot better as is the balance / heavy feeling. I still have a TON of eye floaters and my ears still feel very full and ring. But these are both classic Lyme symptoms. So I hope they will resolve with treatment. Jemma...the headache worries me. Again..classic Lyme symptom along with all of the others you have. Not saying you have it. But why not get checked to be sure. Just make sure you go to an LLMD and get an IGENEX test. |
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Hi all Just thought Id let you know I saw the balance specialist today. 3 hours later after all the balance/caloric tests turns out my right ear is 18% off balance with my right which has probably been caused by the labrynthitis also thinks I had bbpv at the start too. very interesting did make me feel dizzy but in a good way i suppose. Feeling much more positive that this thing is going to go & he has referred me for VRT but given me some excercises to start me off as the VRT is on NHS it may take 6 weeks for appt!!Also helped me with the anxiety by explaining it all & why we get it so dont feel so crazy now. Jemma you sound so down I really feel for you as I think you have had this for a really long time. Thanks for that website link was very interesting. Hope you are having a better day today :) Claire xx |
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Hi everyone, Claire - so glad you got your tests done. Although no cure, I can fully understand how finding out a positive makes you feel calmer and better. Still waiting to hear from my doctor. What makes me angry is the fact at the beginning of all this we paid a fortune to go and see a private ENT consultant who very matter of factly said you will soon get over this - another 3 months or so. That was back in September last year. When I asked about the caloric/ENG tests, he said no need as the MRI was clear which gave them very good indications if these tests are needed. Well, here we are just about a year down the line. So I do feel a bit cheated really. Not that this would have gone away any quicker, but at least I would have felt more positive than I currently do. That said, the last few days have certainly been better dizzy wise. Now it is my head and all these strange pains just like Jemma is experiencing. Also, the last couple of days I have had very loud ringing in my ears. Again, all part of the nerve damage/recovery? It would be so nice to know some of the answers to these things. As you said Claire, why after having a good day at the week-end did you come over with such bad anxiety in the evening - but hopefully the explanation today made you understand why. Jemma - how are you today? Have you seen your doctor yet or are you just trying to relax a bit at home and see how things pan out. As you and I have been going with this for a while now, I think - well what will tomorrows or next weeks symptoms be as they change but seem to be varying degrees of the same. Keep us updated on how you are doing Jemma - always here for you.xx Brad - good to hear that you seem to be getting to grips with your Lyme. When I started to see my neurologist, he gave me a very lengthy (and hugely expensive!) blood test which included Lyme. Thankfully all clear. It is not a common thing over here in the UK, although interestingly enough, there was an article in the paper about it the other day. It was about someone who looked after and bred horses. You have to be so unlucky to get it, because even if you get bitten by a tick, it has to be one that is infected with the particular bacteria that causes Lyme. I suppose farmers or those that live more rurally over here. How do you think you got bitten - any ideas? Andy - fantastic news that you feel so much better and have done things that you were so worried that you may not be able to do a while back. Sounds like you too are on the right track to recovery. Good for you and enjoy the coming week-end. All for now, Love, Gloria xx |
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Hi all, Just to say have at long last received my referral letter to Prof Linda Luxon's Clinic in London - and on the NHS!! It is at 9am (will have to get up at the crack of dawn to get there) on Monday June 7th. I asked for a later appointment time, but they said for a first appointment they are always at 9am - looks like I'll be in for a lengthy session!! Let's hope I get some answers at long last! Love & hugs, Gloria xx |
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Gloria Good news about your appt. Sorry to hear you had such bad kuck with your Ent, if he had sent you for those tests in the first place it may have speeded up your recovery. I was obviously very lucky with mine will thank him tomorrow as i am seeing him again probably be the last visit with him. Started doing my vrt at home this morning so determined it will work!! been to the gym this morning but feel quite dizzy today maybe to do with that very long appt yesterday & all those tests. Why dont you book yourself into a nice hotel on the Sun eve before your appt? might be less stressful than travelling there on the day & a good excuse to treat yourself Claire x |
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Hi all Gloria good news about your apt, that isn't too long off is it! Good idea from Claire to book into a local hotel because 9am is early and you dont want the stress of rushing round to find the place. Claire at least you got some answers about your right ear and now you can hope to get on the road to recovery. Well i saw the doctor again yesterday and guess what she gave me some meds for head pain, it is a muscle relaxant called baclofen, however she would not sign me off any longer. They now have a fit note (not a sick note) and she put on there I could return to work doing 4 hours a day!!! As I dont feel able to return then it looks like I will have to leave. The doctors only want to make targets for getting people back to work because the government wants to save money on benefits so they force people to work whatever it seems. I had a visual migraine only last night and feel a bit nauseous today. Brad good luck with your Lyme treatment, hope it goes well. Are you able to keep working? Andy great news, glad you are seeing improvement! take care everyone xx |
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Good suggestion girls! Don't know what there is around the Kings Cross area - it is known as a bit of a dodgy area (!!!!) don't want to book into the wrong type of establishment! Seriously though, I think that is very practical. Jemma - what is it with some doctors - what don't they understand about suffering. You don't have to go around looking dreadful to feel unwell. They of all people should understand that. Will really be interested in how the baclofen goes. You see, again, why hasn't my 'top' neurologist come up with that?!!! With regards your work situation - do you think you could do some work from home and would your company let you do that? Don't give in just yet Jemma. Maybe there could be some benefit of getting another appointment with a private ENT who would be more sympathetic about signing you off. I remember when I hurt my back some years ago. The doctors signed me off for a week with painkillers. My osteo at the time said I had seriously inflamed my back and signed me off for 2 months. To me, it sounds as if your doctor hasn't even bothered to explore the reasons more fully - i.e. comprehensive blood tests - referral to a neurologist etc etc. My tinnitus, headaches and head muscle spasms are driving me mad too Jemma. I just hope at Royal ENT hospital they can give me some answers why all this is happening. Claire what VRT exercises have they given you to do? How are you coping with them? Dull weather down in London today - makes you feel more depressed when its like this. Must try to be more positive though. Melissa/Shirley - hope you are both continuing to be ok? Hugs, Gloria xx |
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Gloria look at the Guestbook section of that labyritnthitis website (ilia and emma) - loads of people on there have been to see Linda Luxon and have put down timings, what trains they got etc. It may help with your arrangements... I agree with you about the doctors, it really is not right. Surely they know I have been trying to keep working for a year it isnt like i have just given up and not tried but now the fatigue and head pains are so bad i cannot cope with work but of course they just want to force you back so you arent claiming any benefits. I have tried one baclofen and whilst it may have helped a bit with the head pain, it made me feel so drugged and woozy i dont think I could take another one. the tablets are 10mg and the diazepam were only 2mg so i guess that is why they might be affecting me a lot more. I cant stand that drunk woozy feeling it scares me, so you are probably best with what your neuro gave you! Weather is a bit dull here too at the moment. Some sunshine might encourage me to try a walk at least. how is everyone else xx |
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Hi All: Gloria...I have no idea how I got it. I do live in a hyper-endemic area (the North East USA) in a woodsy town with deer. We have ticks all over the place. My wife already has found 2 on her this year (not attached) and we found 1 (attached) on my daughter. Very nervous for my precious 2 year old. I think I got it sometime in 2009 or 2008, but I honestly have no idea. Contrary to what the mainstream docs say, not everyone gets a rash..and the blood tests are wildly innacurate. I am feeling a bit better, so am confident of a full recovery, although it will take time. My balance / labs symptoms continue to improve. I'm not 100% yet, but stores, etc, don't bother me any more. My ears ring and still feel full, but it is better. |
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Hello All, Brad: Amy Tan had bouts with vertigo due to Lyme Disease from a deer tick bite. Once she finally was treated, it all cleared up although she may be having residual effects. Don't know if that relates but just passing story along. I've been reading up a storm about dizziness, vertigo and assorted / resultant problems... thanks to all the postings. So valuable. |
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AAAAAaaaaaaaaaaaaaaargh!!!!!!!!! Sorry if that loud scream made anyone dizzy but I had to do it. Last 48 hours have been a nightmare of Dizziness/anxiety not sure if the anxiety caused the dizziness or dizziness caused the anxiety. Why after such a good day on Sunday & glimpses of hope has this happened? I am spinning too everytime I lay down or even lay my head back on the sofa. Maybe its the aftermath of all the testing on Tuesday or the result of a few vrt excercises i am doing. Has anyone else experienced this after either? Gloria I am just doing a couple of excercises standing with eyes shut feet togetether for 2 mins then progress to heel to toe balance, also focusing on business card & turning head side to side for up to a minute. Each one I do twice 3x a day. Anyway rant over. We have a nice long weekend here in UK then its childrens half term next week so hoping I can muster up some energy to take my girls out. We have to brave some summer clothes shopping. Listen out for another loud scream!!!! Hope you are all ok & Melissa & Shirley hope you continue to recover it gives us all hope!! Hit the 4 month mark this weekend. Never thought I would feel ill for so long :( Claire x |
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Claire - I am so so sorry you have gone down the ladder in what I call this a giant game of snakes and ladders! Regretfully, what you are experiencing, I am afraid is quite normal and exacerbated by the fact you have started VRT and have had those tests as well. What I have found is that each time you go down a 'ladder' it is horrible but not so bad as when this all started and the duration, although again seems forever, but isn't as long. When I played that game of tennis the other week, it was such an intense amount of activity my brain hasn't seen the like of for a very long time, just sent me in a downward spiral. However, got back up and although have had headaches and muscle aches from hell - the dizziness has subsided somewhat. I suppose I have to call that progress. You will feel a lot better in a day or so and I hope you enjoy your time with your girls next week. What part of the country are you based in Claire? I am in Middlesex, near Hampton Court. Ellieanne - have you posted on here before? If not, welcome and hope you are maintaining strength and courage with all this. Jemma - those tablets sounded dreadful. Like me, you have hope that you have been given something that will help only to find you react appallingly to them. Hope you are feeling a little stronger too. Well, hubby and I managed to go out for a meal last night. Had a very small glass of wine - out of determination rather than anything else, but of course suffering this morning. Did my head no good at all, but it was nice at the time! Have good week-ends everyone. Love & hugs, Gloria xx |
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Gloria Well done on your night out & a glass of wine too!!! glad you enjoyed it 'at the time'. You are so right this thing is just like snakes & ladders & I havent been playing the game as long as most of you & would quite like to reach the end very soon. What I need to remember is that when I am having a bad patch I will recover from it & I probably still dont feel as bad as I did right at the start. I live in Norfolk about 20 miles from Norwich. Nice part of the world been here since I was 5. Hampton Court is nice too, my sister was born in Middx I was born in Surrey then lived in Hampshire. Jemma, I went on Emma & Ilias site this morning couldnt get into the guestbook but had a good read about their own stories. Helped alot especially as one of them had VRT & at the start actually became worse with symptoms so I have to persevere. Anyway will continue with my weekend love to all x |
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Hi Everyone!! I just want to share with you all that I am now a one year survivor of labs! It was one year ago today that I was struck with labs. I MADE it!!!! I am so happy that I got through the worst year of my life and I'm such a stronger, happier person now. Gloria, YEAH!! I know that you are turning a corner to healing with this!! Brad, I was bit by a deer tick the other day!! The sucker (no pun intended) is still stuck in me. The doctor put me on antibiotics for three weeks to prevent Lyme. I have to go get the tick removed today. They wanted to suffocate the thing by putting globs of Vaseline on it. Then they want to remove it. YUCK!!! I hope you are feeling well. I have to now go back and read everyone's posts. I was just so excited to say I made it through this crap!!! Melissa |
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Hi Melissa So glad you are over this, it must feel so good to have your life back! Claire sorry you have taken a step back, it seems to happen like this, a step forward then a few backwards, it is just so frustrating. I wanted to ask you if have any clicking and crunching sounds in your bad ear and also whether you suffer from fatigue? I recall someone saying they had episodes of spinning when they tried to do too much, they were checked many times for BPPV but did not have that so it was all part of the labs/VN and was caused by overdoing it. I too have experienced that, it's awful. did the doctors give your condition a name, labs, vestibular neuritis? did it start with vertigo? Gloria good luck with your apt, I can't wait to hear what the 'oracle' tells you about all this. my head is hurting more today, oh what a hideous merry go round this is! take care everyone xx |
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Jemma, Didnt give it a title I dont think! It did start with vertigo & he said I may have had BPPV to start with but still get that vertigo spinning from time to time but not whenever they have tested me with that manouvre. Dont get clicking crunching but do when i turn my head sounds like its coming from my neck??? I was very fatigued for the first 3 months but have found this improving as I do more & still get hit by the odd tired day. I think the anxiety has made all those symtoms worse for me so as that improved so did the fatigue. He did mention the head pain to me as I had that a lot as well at the start although not so much now its caused by the muscles either side of the head leading to the top all connected with the neck muscles apparently so a muscle relaxant would I suppose be the best med for that condition. Do you feel a lot of anxiety? All goes hand in hand with the condition apparently, hardly surprising is it with so many horrible symptoms. Hope you start to see some improvement soon Jemma. Where are you at with the docs & referrals etc? Claire xx |
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Hi all, Claire - can't believe you live in part of the world where I spent most of my childhood holidays! My mum and her family originally came from East Dereham, but when I was young, relatives had moved to Beccles where we stayed. Funnily, now that we have Goggle Street view etc - I looked up my auntie's old address in Beccles. It was like going back in time. There was her house - which I haven't seen for years and years and it took me back to my childhood. Lovely memories. Melissa - yippee! You did it! I take it from your post that you got over your blip and feel 100% again? And now you go and get bitten by a tick! Obviously we have them over here, but maybe because we don't get such continued hot weather they don't seem to be a problem? Anyway, onwards and upwards with your life now. Hope you enjoy nothing but the best of everything from now on in. Yesterday, we went for a lovely walk out near Henley 0n Thames. Ended up walking 5 miles - return journey by the river. Too much - by the end of it my head had 'locked' all those muscles completely spasmed and I felt really off. That is just walking. I've been checked for BPPV a couple of times now and both have proved negative. If I have been out of the house, when I return and am in the kitchen turning around from cooker to table to cupboards etc, I get very spinny headed. I suppose it is the brain trying to cope with the change in surroundings. I have to say the Amitriptyline has helped with the anxiety feeling that I had a couple of weeks ago. I know you don't want to take anything Claire - but would try it. I take 10mg (that is a really low dosage) it does help. So now when I feel rough (most of the time in varying degrees) my body doesn't go in to panic mode. I suppose if I am to describe how I am now, it is still a bit off dizzy wise - especially after overdoing it yesterday - but now I feel heavy headed with a feeling like I've drunk bottles of wine and have a horrible hangover!! That has been my feeling most days lately with the odd head pains going on. Jemma - the fullness in my left ear came back last week-end and really sore - because of that I can hear as if I'm inside my head (you know when your ears are blocked you can hear your own heart beat etc). So have got the clicking sounds, but like you too Claire when I turn my head I can also hear crunching from the top of my neck at the base of the skull - the brainstem area. I suppose it is all the little muscles in that area are so tight trying to stabilise the head subconsciously. Anyway a week today and hopefully will find out more. Not looking forward to the caloric test because now the doctor has given me ear drops in case of an infection in my ear. When I put that in, my head swims around a lot. Oh joy! Can't wait for the day to be able to write a post like Melissa has just done! We will, we will! Love, Gloria xx |
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Hi Claire I havent been given a name for mine either, the neurologist just said the problem appears to be the peripheral vestibular system or something like that. I think it is VN because mine did not start with extreme vertigo and I haven't had any hearing loss. I did have extreme anxiety at the beginning and a few episodes since but that part has improved. The balance problems and fatigue are the worst thing for me. I do get crunching sounds which started about 4 months in - at first I thought it was a middle ear thing or blocked eustacian tubes but now I am thinking it is most likely all the muscles in the head and ears which get affected by this. As regards doctors, I have pretty much given up with them. The ents did not do anything, the neurologist did not arrange to see me again and my NHS VRT therapist said after 5 sessions that she has done all she can now and would refer me to someone who deals with chronic fatigue, that was three weeks ago and I haven't heard anything from them. Gloria so hope you get somewhere with your appointment next week. It would be great to get some definite answers. is your hubby going along with you? Dont worry about the caloric test, it isnt that bad and if it makes you dizzy at least you know your vestibular system is working. speak soon xxx |
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Hi All. Sorry not posted for a while had mega stress and anxiety going on which alas seems to have brought on a new onset of labs..only slightly compared to what it has been. Just been reading all your posts since my last one mid may lots of ups and downs for you all. I wont go into detail and bore you but my son 9 had a fall in school hit his head and ct showed it caused a bleed, transfered to neuro hospital in cardiff and thankfully they didn operate. that was 2 weeks ago today so as you can imagine the stress has been unbearable. I have been lying in bed at night my head swirly , feeling tingly ear pain when pressing side of face near my ear, soooo tired and ratty, words occasionally coming out wrong and low consentration...ha classic labs and anxiety...i thought it had gone after 4 years...maybe a sress blip!!! I have been very tearful aswell and kept thinking there is something else wrong with me.To you all wainting or uming and aring about having mri i recommend you do it.It will put your mind at rest and i keep looking back when i had mine in 2006 and the dr tells me if there was anything else wrong it would have shown up, and i calm down abit then.I work in that dept too and can assure you the machine is noisy but close yours eyes use ear plugs and youll be fine. Wecome to all the new sufferers it is so scary this labs and this site is a great help to me even now. I was signed off work by my dr last week after my sons accident with stress, i feel guilty as am never off work and love my job.I will be back this week. Has anyone had swallowing problems with this eg dry throat and feel they have to chew food well before swallowing? Shirley..thanks for asking the hen party was brill. Gloria, Melissa, jemma, Andy, Brad and everyone else.....chin up keep smiling. Love Penny xx |
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so im at 6 1/2 months, and still swaying 24/7 when will it stop ? :( its unbearable but theres nothing i can do till it goes i mean ive been excercising and taking ginkgo bilboa for 6 months now :( |
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Hi all Gloria I know E Dereham very well am only about 10 miles from there. My nearerst town is Watton dont know if you heard of that? I have had amitrypyline, last year just before all this started I thought that was causing the symptoms at the time but I didnt get on with it I found it made my heart race & got lots of tingling fingers etc so weaned myself off. I have been told that Labs can be brought on by stress in the first place & was diagnosed with that at the time as I had a diferent health scare & got myself worked up about it. That was the first time I have ever felt that way & quite scary too previous to that I was a very healthy 30 something who had only ever been in hospital to give birth!! Melissa, Cant believe you got a tick bite, how unfortunate & quite topical as the Lyme disease link that has been mentioned on here by Brad. Hope you recover okay from it :) Jemma hope you are feeling a little brighter, i can see from your last post that you are really 'fed up' with it all now I hope you can focus on getting better. I know what you mean about the doctors it is almost like they leave you on your own with this one. Makes you understand why Van Gogh cut off his ear!!! He had Menieres & severe tinnitus & he didnt have a Labs forum to talk to other people on. Penny, nice to 'meet' you on here I am not surprised you have been so stressed, poor you I really hope your son has made a full recovery poor little boy & such a worry for you too. Well still the same old same old for me still dizzy/woozy cant lie down at night without spinning again. Have had a friend round today for a catch up & children got together for a play. Was really nice & I even survived all the noise & mayhem. Shopping with my girls tomorrow wish me luck Love to you all Claire x |
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Hi All, Claire: I cant lay down flat either, not been able to since this this thing started. I have got the pillows down to 3 now though which is an improvement from 6 - HA. The consultant at the hospital said I had BPPV but I am not so sure. I think my problem might be fluid as I hear a wooshing noise when I bend my head forward. Good for you to go shopping with your girls, I still find I get anxious about it but do try to make myself do it. In fact since pushing myself I have improved dizzy wise and the VRT has also helped a lot although I don't tend to do them these days. Keep with it Claire you will soon see a big improvement I'm sure. Gloria: I cant believe you got your appointment so quick - it took 3 months for me even to see an ENT at the local hospital. Good luck with it, I am sure you are now on the right road. I have been corresponding with a girl that has had this for 4 years and paid to go private to see Professor Linda Luxon and after all the tests was diagnosed with migrainous vertigo. She was put on beta blockers and given VRT and she says she is much better and on the road to recovery. Hopefully the same will happen to you .. not hopefully I am absolutely positive it WILL happen for you Gloria. I am keeping my fingers, eyes and everything crossed for you. As for me I had my MRI done on saturday so just need to wait and see if anything shows. I very much doubt it. I have had a wonderful day today, hardly any symptoms at all. I even took my car for an MOT yesterday and shopping in Tesco. Felt like my old self. I cheekily asked in the garage if they were taking anyone on as it is only a 5 minute drive from my home. They said they might be and to send in my CV. Doubt the money will be any good but so nice that it would be local. Even if a bit |
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Didnt finish last message .. it went before I could grab it - HA Any how just to say that I am feeling better although not 100% but at least I am starting to live my life a bit more normally. Penny: sorry to hear you are having a bit of a set back, just goes to show how stress plays a big part in this thing. Hope everything goes OK for you. Jemma: So so sorry to hear you are feeling so poorly, I really hope it all passes soon as you were doing so well. I cant believe your doctor doesnt sign you off for longer. Next time go in holding onto the walls or something to show how unbalanced you are feeling - anything to show that useless doctor how unwell you are. I am sending you healing xx Take care everyone Kisses Shirley |
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Hi everyone, Penny - am so sorry to hear of your son. I cannot imagine what you must have gone through. I trust he is ok now? It is quite incredible what affects labs. Don't ever feel guilty about taking time off work Penny - our health is key to everything, especially when you have kids. You couldn't have a more genuine reason. Hopefully, the weather is fantastic as it is here in London? I have spent yesterday in the garden, weeding, cutting back and planting summer bedding etc. Had to stop after a couple of hours as my head didn't know which way it was turning. Felt so much better for being outside though. Claire, I do remember Watton - although I am sure it has changed since my last visit to the area. My parents had relatives/friends at Cressingham nearby. I went through the spinny lying down phase. Thankfully, that has worn off now. This seems to go through phases of different symptoms. Has anyone else noticed that? My head feels like a tight, rusty bucket that creaks every time I turn which causes muscle tightness and headachey pain. Strangely though, when I am really swirly and dizzy, the head tightness isn't as bad. Give up trying to analyse each and every thing now - just want it all to go and be normal! Coming up at the end of June for my year 'anniversary'!! Shirley - great you are doing so much more and feel tons better. Wish you well with a possible job - so much better if it is nearby. Getting really nervous about Monday and Prof. Luxon's appointment. I was shocked about how quickly I got my appointment through. I think my doctor understood when I went to see her last with my hubby. She could see how distressed I was with this whole thing. Claire - you're right - no wonder Van Gogh chopped his ear off! Jemma - hope you are feeling better and enjoying the good weather. Will catch up soon. Love, Gloria xx |
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hi all Thanks for asking about me everyone, yes I am feeling a bit better thanks. I think the time off work has helped a lot with the headache and fatigue and whilst I still feel quite swirly headed my energy levels have improved so I can do things. I saw something about Van gogh too, apparently his self portrait is done on that blue swirly background to represent the swirly headed feeling from his inner ear problem, how I can empathise with that! He was told he had anxiety or was going mad but I bet he was suffering what we have all been through, poor guy. Penny sorry about your son, hope things are starting to look up for you now. Claire I too have had the spinning thing but thankfully only occasionally and not every time I lay down. It is so scary isnt it but it should pass. Like Gloria said there are a lot of stages with this and things can change all the time. S - I too have the constant off balance, swaying feeling worse in busy places or when I try to do several things. It seems to be the mainstay of this condition. By the way I read that there is a exterior and and an interior vestibular nerve neuron and if only the interior nerve has been affected then it does not show up on the caloric test which is probably the case with me. Shirley you seem to be doing really well, I hope it keeps on for you. Gloria don't worry about your apt, it will be fine. I really will be interested to hear what they say. I hope you get to see Prof Luxon herself and get to ask lots of questions. Take care xx |
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Hi all Yes I managed a shopping trip with my girls & lunch too!!!!! Felt quite okay obviously not dizzy free but coped really well, patted myself on the back when I got home.......then collapsed. Have also arranged to take them out with a friend each to the forest park today. Have to make sure life is normal for them now as i worry that they have seen me ill for too long now! Think that stems from the fact that my own Mum was diagnoses with MS when I was 8 so saw a lot of illness from a young age. Sadly she died when i was 26, I already know a lot of my anxiety is to do with that but trying to deal with it now. Anyway on a lighter note I am glad that you are feeling so much better Shirley :) & Jemma looks like you had another blip & hopefully coming through it again. The sun is shining so always a help. Gloria I expect you are looking forward to next week (in a strange way) hope you get lots of answers & pass them all on to us!! You are right about the change in symptoms all the time Love to all Claire xx |
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Just thought I'd drop by to say I'm doing really well at the moment... Last Saturday in London was great, and barely a symptom in sight despite walking around an arena full of people with loud music, drumming, turning this way and that looking at stuff and so on. All this week has also been pretty good for me too... I'm currently finding that I feel find most of the time with only the odd little moment here and there, rather than the other way around. Even my vision is a lot better, albeit still not perfect. I have a week off work after today, which hopefully I'll actually be able to enjoy if I carry on feeling good, while a chance to relax will hopefully help my recovery a little more. At last, I feel like I'm actually on the verge of beating this thing... long may it continue!! |
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Is anyone out there still swaying 24/7 i feel like im going F**king crazy, im doing one of the hardest business degrees in Australia, work 20 hours a week and struggling thanks to this debilitating disorder :( i look back on last year before this occured to me on November 17th with Nostalgia i was so happy until this happened to me sigh :( this has been the worst 6 months of my life so far, it seems like this disorder is going to be with me forever |
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Hi all, Andy - BRILLIANT! For you let's hope this has been a mere blip in your life. Sounds like you had a fun time last week-end. If you can cope with all what you did - then I do think you on the right track. May it last forever and you continue to come back to being 'normal'. S - I was swaying and swirly for most of the last year. My labs came on at the end of June. It is only the last couple of weeks or so that i have noticed the swirly head is more intermittent than continuous. This has to be one of the most wretched things to have to suffer and you are right it drives you demented. Of course, for you having to cope with studies and working doesn't help at all. Whilst I appreciate you do not have a choice, but do try and pace yourself and build in some rest time in your day if you can. It will get better, but as you have probably read from all of us on here it is a stubborn little so and so and will go of it's own accord. Hold on in there S. Headaches and hangover, feelings are daily for me now with some off balance stuff thrown in for good measure. Will tell you what happens after going to see Prof. Luxon Monday. Enjoy the sunshine all. Love & hugs, Gloria xx |
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Hi Everyone!!! Wow, I didn't even realize it's been a week and I haven't read any posts or posted anything. So yes I am 100% fine and better. Gloria, how are you? I really think you need to see a massage therapist that deals with physical therapy. Not just someone who gives massages, but a physical therapist massage specialist. Your neck muscles need to be released!! As for the tick bite, I am on a heavy antibiotic so that I don't get Lyme. The antibiotic is awful! The worst side effects. Upset stomach, nausea, I feel hot from inside all over and I have pins and needles in my hands. BUT I will take the side effects of the drug anyday over labs or Lyme! Jemma, Sandie, Shirley, Claire, how are you all? Melissa |
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Melissa: thank you for asking after me, I am still doing good, keeping my fingers crossed that I am beating this thing. Sorry to hear you have suffered a tick bite - has it actually fallen off yet ? Glad you are still 100% it gives me hope. Andy: Whoop whoop :) Gloria: Best of luck for tomorrow x Well this time round for me its been a week of almost no symptoms, I am just hoping that I am coming to the end of this thing but we all know how unstable this thing is. I think I should be able to return to work soon but my anxiety is stopping me. Has anyone got any tips on overcoming anxiety. I was going to try hypnotherepy but couldn't muster the courage of driving all the way there and in the end I cancelled. It's so silly because I know that I can drive there with very little problem but as soon as I think of doing it the anxiety hits. I've driven since I was 17 and driven all over the country with little thought, now I struggle to drive even 5 miles without anxiety hitting me. Any tips would be greatly received :) Hope everyone is ok Kisses Shirley x |
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Hello everyone, I just wanted to share my story, although I have only been suffereing for 4 weeks and 2 days so far. On May 7th I woke up during the night with strong vertigo. I have not experienced tinitus or hearing loss. I went to my Doctor during the first week and she said it was Labyrinthitis, and said its related to the large amounts of stress I've had in my life lately. Week 1: Several strong vertigo spells lasting 20-30 minutes, brain fog, and dizzyness between dizzy spells. I couldnt go to stores of busy places because I would get so dizzy. Week 2: Vertigo spells went away, no more brain fog, but I had a constant feeling of imballence and got dizzy when I move around a lot. Week 3: I caught a cold, so my vertigo episodes returned, although none of the other symptoms returned. I was able to go into stores and busy places as long as I didnt turn my head quickly. Week 4: Only 3 dizzy spells the whole week, I felt about 90% better most of the time, except I still felt dizzy when moving around a lot. Does this sound like Labyrinthitis? |
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I meant to mention that the 3 dizzy spells in week 4 seemed to be on the 3 days that I spent a lot of time riding in the car, so I think that there is some correlation between these events. I am now approaching week 5, and since I still have never had hearing loss or tinitus as a symptom, it seems to me that there is likely no permanent dammage. Judging from this information, how much longer do you think this will last? |
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Hi All: It's been a while since my update. I hope everyone is doing well. Glad to hear Andy and Melissa are still doing well. I'm doing okay. I'm in day 28 of treatment for my Lyme which was the root of my Labs. I can't believe Melissa got bit a few weeks ago and at least think it is great you are on doxycycline as a precaution. I'm on 400mg / day and have gotten quite used to it. It doesn't bother my stomach anymore. I take a TON of probiotics with it. I also do a 1000mg pulse of Flagyl for 3 days every 2 weeks. Just started one today. Flagyl is not fun. I'm taking about 30 different pills a day, it seems. Mostly supplements for liver and other bodily support and to help detox. Overall...I feel pretty good. There were times last week I felt almost 100% normal. While I do have some symptoms, I should say the majority of my labs symptoms are GONE or at least MUCH IMPROVED! I do still have some ear stuffyness (both ears) and ringing...but both are also better. Now if only I could kick Lyme. I'm encouraged by my progress in only 1 month and hope it is a good sign. I know the people who are the worst off ususally get significantly worse before they get better. Darren...welcome to the group. It does sound rather labs like. Good luck! |
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Hi all Firstly Hello Darren, sounds to me like it probably is Labrynthitis, I never had any hearing loss & have had tinnitus for some time before anyway. I also find I am worse when driving or passenger in a car & am very dizzy after journeys although has shown some improvement lately. How much longer will it last???? How long is a piece of string, doctors say weeks but if you ask everyone here it is a different story mine has only been 4 months but some have been a year!!! Hope you see some improvement soon though you may be one of the luckier ones. Hi everyone how are you all?? I have had a good week last week & felt some improvement managed several days out with mt girls & had a day at the beach with the family. Still had enough by about 8pm dizzier on the days when been in the car, but definately better than I have been, fingers crossed. Tried to have a glass of wine on Sat night at a BBQ but just cant manage it without feeling so woozy for the rest of the evening. Have decided to give up trying it until symptoms are gone completely. Hope you got on well today Gloria looking forward to hearing all about it. Shirley, you mentioned your anxiety I wondered if you would like a copy of my hypno session on a cd I also have one my sister gave me of when she went its like a relaxation session it may be helpful before you actually see a therepist yourself. If you want I can put them both on a cd for you & pop them in the post. You can inbox me your address on Facebook if you like. Hope you are still doing ok Melissa & Jemma & Thank you Andy for putting something positive on here nice to see there is light at the end of that long dizzy tunnel Love to all Claire x |
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Hi all and welcome Darren, Darren - sorry you have had to post on this site. This is such a scary thing especially when you haven't had a virus that you can connect it to as the cause. However, it does seem that all of us on here can relate this back to a stressful time in our lives. For me I had had a hugely stressful time for a number of years, but then did have a terrible chest infection at the same time as labs occurred. At the start, friends told me of people they knew who had labs and recovery was short ( in labs terms) from about 8 weeks to 3/4 months. However, as Claire said for some of us it has been many months ( me I'm at a year now, but was quite bad for 2/3 months before I could even go out of the house - out of bed even! From your description it does sound like you will be short lived with this - fingers and toes crossed for you. Thanks Jemma/Shirley/Claire for your good luck wishes for today. Have just got back - seems I have been up for hours and hours. The journey into London and then the waiting around and then the tests have been EXHAUSTING!! Needless to say - everything normal and all clear!! The Caloric test was horrible though. I did react quite a bit dizzy wise to that - really made me feel quite 'off' afterwards - so was amazed she said the result was normal!. Anyway, the pains in the head and neck, all the anxiety stuff we suffer is totally related and involuntary. In other words it is the bodies reaction to the inner ear imbalance that makes us feel the weird way we do sometimes and all the muscle stiffness and pains in the head and neck are basically out of our control until the brain fully compensates. She tested me for BPPV (have had this done 3 times now) and of course the question about me being a migraine sufferer. I don't have MAV because that is episodic and you feel ok in between attacks, but because I have migraines and am a 'headachy' person, that is interfering with my recovery rate. She didn't give it the name labs or vestibular neuritis although confirmed it started out as labs. She says you can't tell about the nerve damage, but because everything else is ruled out - it is a vestibular disorder as a result of a viral infection, but as I am progressing (glacial pace) I will recover. However, I do have to get the incidences of my migraines under control - so more strange medication! This new one has an appetite suppressant effect rather than a weight gain which a lot of these drugs have - hurrah, but probably will experience tingling in the hands and feet. If that fails, then there is another medication but my local doctor can't prescribe it only through a hospital specialist consultant - so what the hell is that made of!!!! Also she has referred me to a VRT therapist that has knowledge of exercises to prescribe to someone with additional problems (story of my life that is!) So basic VRT exercises are OK to continue with until I see this other person. It will be interesting to see what different VRT stuff she will give me. Anyway, seems I am with this - she didn't speculate a time frame - so will have to see. I suppose I feel better in the knowledge that it isn't MAV or BPPV or anything else, but it does get me down to think that because of my headaches it won't get better quickly. Even though I am not symptom free, I do know I have progressed from what I was like - so grateful for that. We went out to Kew Gardens yesterday with a group of 8 friends. It was lovely, but my head went into freeze mode. Couldn't take all the head-turning when chatting with everyone - seems I still can't deal with being in situations where there are large numbers of people. So there we have it. Just a waiting game, there is nowhere else to go, I know all the information, just need a mountain load of patience to help me through. Hope everyone is having progressively longer, good and better times. Love, Gloria xx |
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Hello Claire and Gloria, thank you both for your responses and encouragement. I have been reading this forum for a few weeks and I finally decided to post. As you both said, it seems to me that I am a "textbook" case of labyrinthitis, and will probably be 95-100% better within the 6-8 week period that most medical sources indicate. If I am indeed a normal case, then I at least want to document my case here on the internet for others to see. The reason being is because I have only found 2-3 other personal accounts of a "textbook" case of labyrinthitis, which is somewhat discouraging. Having this illness has given me much respect for people who have sufffered from this for long periods of time! I hope you are all doing well, and thank you all for sharing your stories. |
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Hi all I have been without internet for nearly a week, its driving me mad. Just popped on at my parent's house to read everyone's posts. Darren welcome to the site. Gloria, I did send you an email but not sure if you got it. I am almost surprised your tests were normal because you suffer such a lot but it seems to be the case that the tests are so often normal. I have bought a book on vestibular disorders edited by Prof Luxon and it really goes into details explaining things, it is too scientific for me in parts but i did pick up some really useful info which I will post on here when I have the internet at home next week. Claire it's strange you feel off in a car because that is when i feel most normal. it is like the movement of the car masks my own balance problems. I have pain in my left ear today, it's not severe enough to be an ear infection but its like a twingey pain deep in my ear. Has anyone else had this? Anyway speak soon xx |
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Hi everyone, Just thought I'd pop in and say hello. I have been going really well for about the last 6 months and have not been bothered by dizziness at all. Hopefully that gives some consolation to some of you who have been suffering with this for months! I think it took me about 15 months to finally feel good again. I also haven't been troubled by anxiety for ages either - and am off the amitriptyline. I notice that Sandie hasn't been around for a while, but Sandie if you are there I wanted to let you know that I had my ferritin levels tested for something else and they are really low! I just wonder if that explains some of the dizziness and feeling unwell that happened last year as well. So it's onto the iron supplements for me.. Hi Gloria - glad to hear that you have progressed but sorry that you are still not feeling great! Shirley - I highly recommend the hypnotherapy - it really made a big difference for me. If you can get yourself there I'm sure it would help. Sending lots of sympathy to all of you who are suffering! Cathy |
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Hello everyone Gloria hope your appointment gave you some peace of mind although you still didnt get that magic wand waved over you that we all need!!!! Your photo is lovely you look really well (dont you hate it when people say that),I think I make more effort to look well at the moment to hide how i really feel. Good luck with the headache meds I too am a headachey person always have been & they told me at my appt this can affect the recovery & symptoms. Jemma I keep getting pain in my left ear have no idea why & no sign of infection maybe its the healing process!! Hope you get your internet sorted soon. Would love to get some info from you from your new 'bible'. Darren hope you are improving & still showing signs of a text book case. Cathy, nice to hear of a success story....but 15 months crikey hope after 5 months I see that sort of progress. I am off for a sneaky afternoon with a good friend shopping, lunching & then seeing sex & the city 2. Hope I can manage the cinema okay decided it was time to try it out. I am having a worse week this week than last I think its to do with the low pressure does anyone else feel like this?? Hi Melissa & Shirley hope your recovery is continuing :) Take care everyone Claire x |
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Hi I have been suffering with labyrinthitis since last October I had to take a month off work as I had terrible diziness, the world was rotating over and over and I was physically sick as well. It slowly improved till I just had severe vertigo when bending down, moving too fast, looking upwards etc. But I was left with a hangover type feeling even though I had not drunk anything, bad coordination and an unbalanced feeling, tinnitis and a full feeling in my ears. By Christmas I felt 85 per cent better. Then February it started up again whilst driving to work I had terrible motion sickness had to stop and be sick. The cars moving towards me the hedges whizzing past, the white lines moving gave me a terrible dizzy feeling I made it to work but had to go straight to the loo to throw up again.I felt terribly ill at work but struggled along. I work alone as a school cook in a little village school I love my job but I have now been unable to work for 6 weeks as my dizziness is too bad and it is too dangerous as I am unable to safely handle hot pans etc. Since then I have been unable to drive, I find I can travel as a passenger as I don't have to keep looking at the road. My doctor arranged an ent appointment it took 4 weeks for my appointment to come through. The verdict is uncompensated labyrinthitis possibly in my left ear as tests show hearing loss on that side. I failed all of the balance tests and the Doctor has given me an exercise sheet to follow these are Cawthorne-Cooksey exersizes. I did them straight away and I feel terrible today sick, dizzy, headachey, very off balance. The Doctor said no pain, no gain so I have to ignore these feelings and carry on has any one else tried these exercises? I feel as if I am only living half a life at the moment as I can't even go out alone for a walk, as I am so unsteady. I am getting depressed help/ Shirley |
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Shirley, I'm sorry to hear that you are still suffering. Judging by the tinitus and hearing loss, it sounds like you have damage to the ear, so your brain needs to compensate for the wrong signals it is getting from your damaged left ear. Since most of your vertigo symptoms dissapeared around December, it seems that decompensation may be the cause of your relapse of vertigo. In this case, you need vestibular rehabilitation, which your primary doctor has already started. I am obviously not an ENT, but this sounds like a logical prospect to me. If you start reading several pages of this forum you will see that this illness often takes a long time to cure, but it does go away. |
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So i saw my neurologist again and he still says i have psychological swaying i was aggressively argueing with him for 1 hour about how the swaying resolves when im in a car or train and he cant explain the initial attack of spinning vertigo i had 6 months ago when my swaying started,he says ive never had labrinthitis but i explained how my ENT diagnosed labrinthitis at the start, then backed off his diagonisis after it didnt resolve after 2 months, he says i have no physical inner problems due to the caloric test, i swear im going F**ken crazy due to doctors refusal to help me with this thing, its really not helpful to my condition. The one positive thing i got was anti depressants, i think im at a point where i cant cope anymore and need some "medicational" help , ive been having alot of extremely depressive thoughts :/, he also reinforced how over 25 years he has seen at least 1000 cases of vertigo swaying, and he said labrinthitis cant cause swaying, its always caused by psychological reasons, this is all from a guy who has 5 degrees. |
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Hi all, Shirley ( I think you are another Shirley - we have another on this site who glad to say is recovering quite well). Shirley - keep strong and hold on in there. Do the exercises - they do help even if you get bored with them and of course they will make you feel worse at the start, but it is quite amazing how the brain quickly adapts and after a couple of days the after effects aren't as bad. Cathy - how lovely to hear from you and glad you are now doing well. I am seeing improvements, but still know I'm not at 100%. I keep going every day though - you have to don't you! Hope life for you is nothing but wonderful - you deserve it as anyone does after having this dreadful thing. Jemma - did get your email - sorry didn't reply but by the time I got round to it you were changing providers. Thank you so much for your wishes and of course since Monday have felt quite off but am ok. Let me know when you are 'back on'. The Prof Luxon book sounds interesting. We did see her, but didn't get to see her one to one. I think that was only if you are a severe or more interesting case!! Darren - hope you are progressing well. Assume you are from the US? Are you having hot weather there yet and do you find that affects how you feel? Claire - you do seem to be coping brilliantly with all this, but of course when you have a young family, you have to carry on. Even though I don't have a young family, but have tried to keep going as normally as possible. God, how difficult has that been! This thing certainly proves that in adversity we are all given extra strength to cope even though we don't think so at the time. Low weather pressure does seem to affect me too Claire - weird? S - in the year that I have had this, I have had ENT consultants tell me it will be over in a couple of months, VRT physios telling me it is not labs, but muscle spasms in my neck, hospitals telling me that the headaches and pains in my head are tension headaches and to go and get my husband to give me a head massage!!!! Thank God for this site, because I have been able to compare many of my symptoms with others who are suffering this and know it isn't me going completely mad! Can you, independently, try and find a VRT physio who can give you some exercises to do. They are laborious, but do help. Keep as positive as you can. Anyway, regaining my strength after Monday - feeling more 'hungover' and headachy with a bit of swirlyness so hopefully that too will diminish. Am really trying not to think about i t too much, because the consultant said that anxiety also hampers recovery. Difficult that one!!!! How on earth we can keep calm and unaffected with this monster, but will try!! Speak soon, Take care, Love & hugs, Gloria xx |
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Hi all Gloria, thanks for the encouragement I may seem to be coping well but certainly have my moments!! I have got my head round the fact now that I will get better it will take time & I will have good & bad days I think once I realised this it has helped me cope a little better. I also felt very 'off' after my caloric/balance tests I didnt feel good the whole week after was really woozy & off balance & headachy but then the week after i had a good week so hope its the same for you. Shirley I know exactly how you feel sometimes you think you just cant go on anymore but you do! everyday is a new day with new challenges but as you can see from this site there is an end its hard to focus on it sometimes but you have to I now try to think back to diferent times/dates when I know I felt much worse then I can see the very small progress but it does help you to realise that it will go eventually. Has to be one of the worst conditions I have heard of, please hang in there & pop on here sometimes to compare notes it really helps :) Went out with my friend yesterday shopped, lunched then saw sex & the city 2, a great escape from all my problems worth the dizziness when I got home last night!!!! Take care everyone Claire x |
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Hi everyone Just popping in to say hello! Lots of newbies (again) on here. Will it ever end! Jemma, just to say about the 'in car' feeling when you say most people feel ok in a car. I am NOT one of those people. I can be ok a lot of the time now but in the early days it was really bad for me. I am talking about being a passenger as I have not driven for many years. Also, this week our car went into the garage for repairs and we were given a courtesy car for a couple of days. We have a Volvo V70 but this was an upgraded model and boy was it different. The suspension was totally different and I felt like I was rocking on a boat - it made me so sick and off balance. My hubby even felt it and he's OK! Jemma, are you still working? And, how are you nowadays, I know you have suffered real bad. That pain you mention is the same as I get. I don't get ear infections or anything like that but I do suffer from a deep stabbing pain which will last for a couple of minutes and then disappear. Cathy, so good to hear that you have been doing so well! I too, have had a really good year (compared to last), probably since I gave up my job. I'm not at 100% and probably never will be but I do have a good quality of life now and can go for days without any symptoms. As regards the ferritin, how low are you? I was down to 10 two years ago. I definitely think it contributes to how you feel once you have got Labs, possibly making it worse? Back then I would sleep every day in the afternoon and I just felt so bad all the time. Now I do not sleep at all through the day. My daughter who is 13, started to have dizzy spells and I got her ferritin tested too and she was at 13. She has been on iron pills for a good year and while she is still only at 39, she hasn't complained of dizziness for a while. Mine is now at 64 (after 2 years of heavy iron supplements) but I do feel a lot better. Have a look at this http://www.cradamsmd.com/prod032.htm and note the symptoms. Again, GPs etc do not think it is bad that ferritin is so low, the normal adult range is 12.1/15.1 but there is growing concern that these figures should be reviewed. Jeez, you start to lose hair (thinning) below 79 and other bodily functions don't work so well so why such low 'normal' figures? It's mad. Gloria, you look so well in that photo! It really is so nice of you to give others so much advice on this site. Thank god there are people like you! Regarding your caloric test - don't worry about your 'normal' results, I really don't know why they bother putting people through these tests because none of them are conclusive. Mind you , you were braver than me as I was too chicken to have that one - lol! So, here it is, one week to go to the Green Day concert at Manchester. How the heck am I going to cope with that? Open air and thousands of people, that is going to be a real test! Take care everyone, Sandie x |
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Hi All, You all seem to be coming on so well now unlike me!!! I was great for couple of months but now the past 4 weeks with all my stress and anxiety i am worse than ever, so much so going to bed and thinking i wont wake up. I am not as dizzy as i was but i feel as though i am shaking and in a world of my own.my left ear is painful on the side of my face. i am so stressed i cant get my words out and i am so tearful.my head if just foggy and i am swaying abit. last night i was convinced i didnt and never did have labs but i have a tumour...but again i pulled myself together and remembered what my dr said...mri was clear you have labs...that was 2006 and i am still going..like you Gloria!! I am normally so laid back but the past 4 weeks i feel i am losing it completly with my sons accident, stress at home, and last night our hamster died!! I am very tearful typing this and if i dont go now the keyboard will blow up with my tears, does anyone else have days like this...i cant stand it. Also does anyone have post nasal trip with this and feel their throat is clogged all the time, i am very scared with this bout and i want it to go.. Take care all Penny p.s Claire.. i wouldnt mind a copy of the cd if you have one ,i could put my address on here if Richard agrees.. |
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Hi All, Hope your all doing well. Rich - I hope I've done it right - thank you :) Cathy - thank you for your advice - I do feel that seeing a hypnotherapist is the way to go for me but its just getting there. My anxiety is just too great for the drive there. Claire (thank you) sent me a copy of her hypnotherapy session and I did manage to listen to it this afternoon but never got to the end of it as I fell asleep - HA. But it is very relaxing and I will put it on again later and hopefully stay awake this time. Gloria - The caloric test had the same affect on me, I felt very off and swirly for several days after and I also had a really bad cold which lasted nearly 2 weeks after. I am sure the cold was brought on or made worse by it. Mine of course also came back normal which wasn't a surprise although I swear I had more spinning in my right ear that my left but they said they were both the same - they said 140 in each ear, whatever that means. Do you feel better for going ? Love your new photo :) Claire - Thank you for the tape - as said above I put it on this afternoon and never got to hear the end of it as I fell asleep. Its wonderful and relaxing though. Glad to hear you managed ok at the cinema, was the film good ? I'm wanting to see that one myself. It's so nice when you go out with friends - makes you feel normal, although I guess we don't actually "feel" normal but you know what I mean. Shirley - Welcome, you will find this site so supportive. You sound so much like I sounded when I first came on here. Like you mine started in October but I have not been able to work since. I feel I am now starting to recover and am now trying to overcome my anxiety and get back to work. The VRT exercises worked for me, they will make you feel worse to start with but apparently they are supposed to. The more you do them the more your brain will adapt to the different positions. I actually went private to a physio specialising in vestibular problems and she gave me ones to suit me. Just keep with them - you will soon feel a difference. I had a really funny feeling yesterday whilst out at the local shops - a kind of visual movement dizziness with head pressure and feeling faint. I got really worried - but carried on and after an hour or so it passed. Just another stage of this thing I guess. Luckily I was with my daughter and we nipped into the cafe to have something to eat - I think if I wasnt with her I would have really panicked. It didn't do my anxiety any good - HA. Take care Kisses Shirley |
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Gloria, I live in San Diego California and the weather has been warm ever since I came down with Labyrinthitis, so I really don't know how weather effects my symptoms. I guess that is probably a good thing, because it seems that pressure changes are never a good thing for a person with Labyrinthitis. I have had this for 5 weeks now, and I can pretty much function normally. I only get dizzy when I move my head quickly. From what I have read, this sounds like the last symptom of Labyrinthitis, and will last at least several weeks. I am very happy to be feeling better because I will loading a 26 foot moving truck and move 1200 miles away at the end of this month, and that would be impossible with acute level symptoms. |
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Hi again Sandie, My ferritin level is 4. I read that link that you posted and it all makes so much sense. I can't believe that my iron levels didn't get tested in all that time I was having trouble! I think as you say that I did have labs but the iron deficiency didn't help with the recovery. The cause of the low iron is due to bleeding really heavily each month due to fibroids - sorry everyone I know this isn't related to labs but just giving an update - so now I have been told I should have a hysterectomy! Which just seems like such a hassle. It's a bit annoying really, after getting over the labs and now this! Anyway... Wishing everyone a dizzy-free weekend, Cathy |
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Hi Cathy, That's really low, and you are so close to anaemia now. There is a good forum on www.healthboards.com, go to the 'anemia' forum and there are lots of people on there with low ferritin levels. Are you ok with taking iron and how much are you taking? I can only take ferrous fumerate as it is the only one that agrees with me, and I take 420mg per day. I am supposed to take 630mg but I always forget to take the third pill! I was on a much lower does at first but the GP bumped it up as it wasn't making any difference to my levels. Like you, mine is period related as is my daughter's. How old are you Cathy? I was offered a hysterectomy years ago because of my heavy periods but didn't go for it. It really is a major operation, I'd rather just suffer with my heavy periods. I don't know if it contributed to the Labs symptoms by making them worse or not but it can't harm to get your body functioning properly again. Take care Sandie x |
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Hi all, Well it's been a while since I last posted. Sorry I haven't had a minute to even read everyone's posts. I am doing fine. I am recovered!! Thank god! I am now titrating off the Zoloft. Gloria, Jemma, everyone how are you all? Melissa |
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Hi all, I was up late last night writing a long post - and then it disappeared. AAAARRRGH! So - feeling brighter and fresher this morning, I will try again! Penny - I was so upset to hear how down you feel and clearly with a nasty relapse. I am sure it is because of all the stress you are enduring at the moment. Sending big big hugs. You will get through this - you have done it before. You are strong (although I know it just seems all too much to bear, but as I said before we are given a strength to deal with all this stuff. With a family it must be difficult, but you must try and build in a little bit of 'you' time in your day where you can go off and chill for a few minutes/half hour and make yourself relax. Not easy when you are feeling so wretched. For some it does seem that labs effects keep on returning - can you go back and see an ENT specialist again just to go over things - are you taking any anti-anxiety meds like Amitriptyline? It does help. Your MRI was clear and would have shown up anything that was bad. My VRT physio had to keep telling me that all these odd feelings and weird pains and muscle spasms in places I didn't know I had muscles, were the fact that our balance mechanism isn't quite right and isn't in sync with everything else in our bodies. The throat thing is an example of this. Plus, I too have developed post nasal drip - coincidentally on my left side which is the side that has been affected by all this. Keep on in there Penny. xxx Sandie - how wonderful to hear from you. I have assumed that you were having a good phase and so so pleased for you. The Green Day concert has come around again! At least this time it is in the open and let's hope for good summer weather! Enjoy! Are you going to be brave and get a holiday this year? Don't know whether I will ever be able to contemplate going on an aeroplane again after this. We'll see next year. All the private ENT/neurology consultants have had my money so can't afford to go anyway LOL!!! Cathy - one thing after another! Briefly, I had fibroids but they just took them out. They wanted to do a hysterectomy but I didn't want that. They try it on because it is easier for them. I had what they call (excuse the spelling) a myomectomy. Everything went just fine and solved the problem. Darren - sounds like you are doing really really well. So convinced this will be short lived for you. It's all that lovely San Diego sunshine! Keep doing great and good luck with your move. Claire - hope the after effects of your night out are diminishing and you are seeing better days. Melissa - so good to hear you are out of this now, thank goodness! How are you doing with your Lyme meds? Jemma - missing you on here. Hope you are continuing to improve every day. I assume you are not 'hooked up' to your new internet provider just yet. They do take ages. Thinking of you. Shirley - sounds like you are doing fine if with a blip now and then. Any news about the Tesco job? I'm getting stronger after all those tests on Monday. Swirlyness much less, although did come back with a vengeance on Wed night. All my head pains/muscles spasms are also much less, but maybe am just going through a better phase. It is so difficult to become positive with this and think you are out of it at last, because it does seem to then bite back!! Being sociable and doing lots of conversation in crowds is still difficult and makes my head reel, but persevere. Lovely to hear from everyone and send lots of love - hope everyone has good week-ends. Catch up soon. Gloria xx |
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Hi all Just popped on quickly at my parent's house again. I can't believe our internet is not sorted yet. They promised it would be done by 8pm last night but of course it still isn't working!! I am desperate to get back online again, this site is my lifeline! Sandie - great to hear from you and so glad you feel better at the moment. Hope it continues and you enjoy the concert. In answer to your question, I have given up my job because it was all too much. Luckily my boyfriend has been really supportive because I just felt so ill every day at work. I am starting to feel less tired and a bit stronger now I have been resting but of course the dizziness and off balance is still there as ever!! Just wish it would go. Gloria I am just the same about being conversational and social, it makes my head reel so I avoid it. I just hate the feeling. If you look on the Vestibular Disorders Association website they have put some new info on there and one section is about the psychological effects of vestibular disorders. It even says how people with this may have problems sitting in meetings at work and how even conversing with friends in a relaxed atmosphere is hard due to the fatigue of the frequent head turns etc. At last validation we aren't going mad and this is part of it!! Anyway best go but will post again as soon as I am back online! Take care all xxx |
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Just trawled through a survey of vestibular disorders on the VEDA facebook page (thanks to Shirley for finding that one) very interesting lots of answers that apply to all of us http://www.conciliocreative.com/dizzy/results.html having a really bad few days so dizzy just like at the beginning so not feeling positive enough to post anything. Hope I come back up the ladder again Claire x |
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Hi everyone, Not having a good couple of days at all - snap Claire! Don't know if it is still the after effects of last monday. Anyway, not so much dizzy as really bad headache pains - not a headache as such and those really tight head muscles again. YUK! Plus feeling shaky and anxious. I think it is also because I am coming off the Amitriptyline to go on this other medication the consultant gave me. So not one thing it is another! Jemma - good to hear from you. I am not surprised about your provider - ours promised a quick connection and was then ages. Still, glad to hear you are feeling more rested. It does help not to have that pressure of work everyday. Melissa - how are you feeling coming off the Zoloft? Penny - hope your days are improving - as well as yours Claire. Certainly don't feel up to much today - could go back to bed, but mustn't as that is letting this thing beat me. Speak soon. Love, Gloria xx |
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Jemma - sorry you had to give up your job - are you actually on sick leave or have you given up all together? I know exactly how you feel - I worked for four years and felt like I was on a merry go round - never ever feeling good. Dizziness, vertigo, balance problems and all the other stuff - on and on and on. Since I left work, I have only got better and I am sure this will happen for you. I'm not saying I'm recovered - I don't think I ever will be but since leaving work I have a better quality of life. Your balance will improve - mine was really bad for a long time and then I would be ok for a couple of months and then it would go again. But it definitely gets better. Green Day tomorrow - weather's good so that's a bonus as it's open air but how will I cope? I've been ok and it's not 'that time of the month', so finger's crossed. Gloria - just Scotland for me again this year. We were going to go to Amsterdam via eurostar this year as I was fine going to Paris last year, but have decided against it. Aeroplanes - no way - I would hate to start something off! Take care Sandie x |
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Hello everyone, Wow its so quiet on here where is everyone? Are we all having a bad time at the moment or maybe everyone is so well that they dont feel the need to log on?? I am definately having a bad time! Started last weekend had to go to bed on Sat & Sun afternoon to rest from the dizziness. Tried so hard this week to keep on going & not let this 'thing' get the better of me been to the gym met friends had lunch did all my housework then spent most of the evenings flaked out & spinning around. Gloria I really hope you are doing okay maybe we are suffering with the low pressure we need some sunshine. I also have been on & come off Amitriptyline & it wasnt easy so hope your symptoms are caused by this because at least that passes. Can take up to 2 weeks to leave your system although the packet says a few days! I have finally got my appt thru for VRT at the balance clinic for 15th July just 3 days before my 40th birthday!!! cant come soon enough though & have been doing some exercises twice daily too. Jemma are you back online yet? Hope you are doing better too. Sandie, How was Green Day? I am taking my daughter to an outdoor concert in a few weeks desperately hoping I will be okay for then. I know what you mean about flying, the way I feel at the moment I dont care if I never fly again & I am someone who loves holidays & booking things spontaniously but this 'thing' has changed all that. Oh well hope do be feeling mors positive soon Thoughts with all of you Claire |
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Hi Claire Yes it is very quiet on here but it often happens, you get a few days where nobody posts and then there'll be a flood! Green Day was brilliant. I took my 13 year old daughter and we were right at the front. It was so hot and the gates opened at 4pm. We left our hotel at 3pm after travelling for 3 hours on the train and getting lost in the middle of Manchester. Green Day weren't on until nearly 8pm so that was 4 hours in the sweltering heat before they even appeared and then a three hour set from them. People were being carted off left, right and centre for medical assistance but not me! I only had one slight dizzy spell for a couple of seconds and that was it. I have worried for months about whether I would be able to manage it. And, I didn't go to the toilet for 9 hours until we got back to the hotel, that was another great worry! Who are you going to see? Claire, I have had this for 5 years gone March but I have never been as bad as I was for the first 6 months with it. I tend to have relapses where it is really bad and I don't recover for 5/6 months but I think I am a bit of a rare case with this as most people get over it long before then! It has ruled my life for all of that time and ended in me giving up my job, but hey life goes on and it's not so bad! I do cheat a little bit and I did take 3 Stugeron yesterday which really do help me a lot as they control or dampen the messages from the inner ear to the brain. But if it lets me live a better life then I will continue to take it. I have only used about 40 tablets over the space of more than a year so I don't think I'm overdoing it! Take care Sandie x |
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Hey Claire, hey Sandie, hey everyone. Well I have been the same as you Claire, been really swirly and off balance. It came on on Sunday and hasnt left. I ears are really painful and full and it seems when this happens the dizziness gets worse. I have had such a good run of being ok that this has brought on the anxiety again and the feeling that this will never pass. Like you Claire I have been trying to get out everyday and keep up with everything. I went out shopping today and looked up at something on the shelves and wham felt dizzy and nearly fell backwards. If it wasnt for my daughter standing next to me I think I would have fell to the floor. I really need to get this BPPV sorted out. I have an appointment with the consultant at the hospital next week regarding my MRI and caloric test, although I doubt it will show much, but hopefully he can do something for this BPPV. Take care Shirley x |
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Gloria, I feel fine coming off the Zoloft. I don't want to jinx myself, but I am really 100% symptom free. I even had a bad cold last week and other than cold symptoms I was fine. I hope you are doing well. I haven't posted in sometime because I am so busy with the kids. School gets out for the summer in a week and I will be at the pool with them all day. It does feel great to know that I can enjoy this summer. Last summer was awful!! Thanks for asking after me. Melissa |
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Hi all, Sandie - so pleased you enjoyed your concert. As you say you have to do whatever it takes to help give you a normal life and some enjoyment - Stugeron or not!! Glad the weather was good. Claire/Shirley - sorry you are feeling rough again. Shirley - they should do a manoeuvre to check for BPPV and then it is very simply rectified. When I went to the clinic last week, she did try for me, but I don't have that. I am progressing slowly - haven't quite landed on the square with the long ladder to the top of the board near the winning point - if you know what I mean!! Feel better than I did last week though. Saw the VRT physio that I had been previously seeing, yesterday. Explained all about my trip to Prof. Luxon's clinic. Basically, there is no more she can do. She said the key for me was to try the meds to stop my migraines (haven't done so yet - dreading them) and she says I have to relax. Like you all, I feel I must be normal and rush around to do the things I have done in the past. She said the brain at present cannot deal with that level so I have to calm down! There is a point to carry on and do things, but then stop, sit down and relax! I can do that, but all very well for those with families - Claire/Penny - I think of you. So to ensure I do the VRT exercises consistently (the key word) every day - and time to allow everything to settle and heal I suppose. Melissa - so so very pleased you are recovered from this - having a cold and no symptoms was the real test! So for you go and enjoy the summer with your girls and have a fab fab time. I'm doing ok. Dizziness is much much improved and perhaps as you've read, I don't have MAV, but my migraines are hampering my recovery. So onwards and upwards hoping one day I'll be totally rid. Have got my hubby's relatives coming over from Vancouver to stay with us for a week. Am dreading that as I've got to take them sightseeing and host. Told my hubby he will have to pitch in as I don't think I will be able to do all that on my own! So at present as well as dealing with me, I'm cleaning, scrubbing, painting/decorating - all the things we do because we have to impress! My house is not a tip and perfectly presentable, but why do I feel it is and make all this work for myself?!!!!! Is it me or is anyone else like that?! Anyway to Penny - do hope you are feeling better than a few days ago. Let us know how you are. Thinking of you. Jemma - you too. Hope you are progressing. To Gary in Ireland. Haven't heard from you in ages. Just to say, hope you are feeling somewhat better and enjoying a good or at least reasonable period. Do think of you and wish you well. Hope you all have good week-ends - VRT-ing and RELAXING!!! Love & hugs, Gloria xx |
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Hi again, Sunday morning and have woken up feeling so horrible again. Why is it that after all this time, and, after a day out to visit relatives ( about 100 miles) feeling fairly OK - as most my days are now - then this morning feel shaky, sick, am in bed but feel like I'm sinking. Got up, feel not so swimmy headed, but still rubbish. Just feels like it is impossible to organise a day out and then suffer hugely the next day. It maybe because I had to ride in the back of our car as my mum-in-law was in the front. So maybe the brain found that more weird as I normally sit in the front?! Drive yourself mad trying to find answers to all this weirdness! Or it could be the result of my hubby's rant about the football on Friday evening!!!!!!!!!! (or lack of it!) Hope you are all fairing OK. Love, Gloria xx |
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Hi all, Just thought Id check in and tell everyone where Im at, Im at month 18 and mostly recovered pretty much function normally but occasionally feel slight imbalance and dizzy but nothing major. But I have been battling some other issues recently. I have had some sort of post viral fatigue/chronic fatigue and have been dealing with depression which I have dealt with on and off throughout my life. Its a constant battle but I will prevail through all of this, I have been going through some bad stuff but I believe I will get through this and Im trying to stay positive and focused on getting to where I was before all of this... DC |
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Hi everyone, I haven't disappeared, still not got internet, it's over two weeks now. We have been doing a lot of nagging and shouting at them to try and sort it out as it is so frustrating when you rely so much on the internet. Anyway have read everyone's posts and I am in the same boat. Whilst not too tired or ill feeling because I have been able to rest I am still really off balance etc. I dont think hayfever helps. Sandie, yes I have left my job and feel better for it. They did say I could go back if I want to but I don't feel like I will be able to keep going with it. It was making me feel so bad just like you described every day. I am praying this won't last forever but somtimes you can't help thinking it will. Like you say at least you can have a better quality of life when you dont have to drag yourself to work every day and collapse afterwards. Gloria, Claire thanks for asking after me. I am dying to share with you those things from that book I mentioned. It is not anything world changing but it did answer a few of my questions and I really identified with some of things it said. I am so hoping this week I will get back online from home then can post. Anyway, bye for now xx |
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Hi all, Another week begins! DC - so good to hear from you. Glad to hear the labs thing has pretty much gone, but sorry you are having to deal with other issues. The fatigue thing I am sure is a result of all this. I have never suffered from tiredness or indeed anxiety since the onset of this. I'm just grateful I do not have to work - could not cope with that. A friend of mine at the beginning of all this last year told me to be careful, look after myself because of it causing chronic fatigue etc. How right she was! It seems as you come out of this, it leaves you with a number of odd things. Mine is headaches, muscle spasms of the head and neck, sore back of the head and if I am having a really rough patch, for me now I wake up feeling really sick and groggy. I drink some herbal ginger tea which helps and by an hour or two I'm ok. Keep going onwards and upwards DC - you will get there in the end. Also, do let us know from time to time how you're doing. Always nice to keep in touch. Jemma! - so glad to hear from you too! Isn't getting connected to a new provider just the pits!! We waited ages and ages after so many false promises. Really glad you are feeling more relaxed - it does help with this for sure. My blips seem to be short lived and feel reasonable in between. Still not perfect or normal I hasten to add. So, like you just try to be positive that this will gradually fade away! Looking forward to hearing about Prof Luxon's comments in her book. For me, I feel better than I did yesterday although this morning was still a bit yuk, but when I think back to months ago, when these feelings lasted days and weeks! However, you might be interested to know that I don't think cutting off the tip of my finger with some scissors whilst cutting some stems off flowers has helped!!!!!!!!!! Spent several hours in A & E as my finger would not stop bleeding. Had to go back this morning to get the dressing changed. SO SORE!!! I was like a baby, it hurt so much when she gently pulled off the old dressing!!! How dumb can you get. That little incident certainly brought back a very dizzy feeling! Hubby is grateful we have a dishwasher - otherwise he could see himself having to do the dishes for a few weeks!! One thing after another!! Claire - hope you are feeling brighter? Hugs, Gloria xx |
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Hi everyone again Well thank god I am back online, what a relief! Gloria ouch that finger injury sounds awful. I think I would have fainted if I did that! Hope you are ok. Like you I am muddling along feeling really off balance today, I just want my head to be normal! DC great to hear from you. So sorry about the depression which I too experienced for at least the first 6 months of this. Hope you come through it ok. I have been suffering the fatigue and have been referred to a chronic fatigue therapist on the NHS. I am sure mine is caused by this rather than being M.E. Here are the long awaited points from Prof Luxon's book, things which stood out for me anyway, hope they help everyone understand a few things we have all been asking:- 1. The caloric test only assesses the horizontal semicircular canal function at low frequencies, therefore any damage to the vertical canals, otolith organs or horizontal semicircular canals at high frequency will remain undetected despite extensive investigation. 2. Saccadic accuracy (ie following a dot with your eyes as per the ENG testing)is not altered in peripheral vestibular disorder. (So the fact that you may have a normal result is to be expected, usually error in saccades is caused by central nervous system disorder.) 3. The vestibular syndromes/symptoms vary depending on the severity, extent and involvement of the 5 different vestibular receptor organs and symptoms can vary from acute vertigo and nausea to a more insidious presentation, ie goldfish bowl vision or the brain slopping round the skull. 4. Failure to compensate usually takes one of the following three forms:- a) recurrent episodes of vertigo with no interval symtpoms often triggered by stress or other illness. b) failure of recovery from initial event whereby the acute vertigo lessens but they are prevented from resuming all normal activities due to continuing disability albeit with milder symptoms. c) persistent fluctuation of symptoms after the initial episode which consists of improvement and then relapses, one step forward three steps backwards. 5. Failure to compensate is associated with the primary symptoms of dizziness and/or vertigo and secondary symptoms of anxiety, depression, phobic symptoms, malaise, fatigue and cervical pain due to tension in the neck muscles. 6. Dynamic rather than static exercises should be done as most patients with vestibular dysfunction do not complain of symptoms when stationary, eg standing one one leg but their symptoms are visually induced or motion induced when trying to live normally eg shopping, cleaning or travelling around. 7. The book also stresses the close link between psychiatry and neurology hence all the anxiety symtpoms due to this condition. The answer appears to be VRT done gently and consistently over time. There are no time scales for recovery as everyone is different. Hope this is interesting anyway. Claire an Shirley hope you are ok? Jemma xx
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I was reading one of my workout books the otherday and the author stated exercises that have you upside down like handstands and head stands strengthen the vestibular system more then any other form of exercises. The theory is that when upside down the vestibular and nervous system are in a heightened state to keep the body balanced whilst upside down. I might start doing headstands and see if I feel better. DC |
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Hi Everyone, feel like my positive self has come back so thought I'd pop on here again. Gloria you poor thing hope you are healing well. Thanks for asking after me & Jemma too, nice to see you back online :) I had a terrible week all last week so swirly & high anxiety. Really felt that I had taken about 6 steps back. This week has been improved but still getting the dizzines lots of ear popping too think so much has to do with the weather in my case so I am really hoping that summer is here now. I have been out on my bike the last couple of days & still going to the gym anything to help with the compensation. at least its got me off my backside. Jemma I was really lethargic & fatigued at the start of all this but luckily only hits me now in the evening. i feel for you as it is so horrible when you feel like that. Hope things are working out okay for you now you have given up work. Not an easy decision but probably the right one! Interesting reports by Prof Luxon. Whats the book called I may invest. DC I think I may try a handstand now if it helps then I will try anything :) Melissa so glad you have improved so much lets hope it is for good now. Shirley hope you are okay how is the cd working? Good luck everyone & lets hope we can all see some improvements coming Claire x |
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Hi all, Lovely to have you back Jemma! Interesting stuff if a bit scary - how do we control the other symptoms when they just seem to appear from nowhere? I have had an ok couple of days - not brilliant, quite swirly yesterday and headachey. Haven't started those other tablets yet. Going to get them today - a bit scared, but as my hubby says, if they don't suit me then I have to stop, but must try! Claire - so glad you are having a brighter week. Good that you are keeping exercising. Are you still doing the other VRT? Jemma - what VRT are you doing now. The book says to be dynamic, but I don't know whether all the head turning and toe to heel stuff is dynamic - the VRT physio said it was if it induces my symptoms, but that doesn't do it for me now really. What about you? My neck physio said my back and neck felt much better than of late - maybe because I was concentrating so much on my finger (good point) - I said maybe just a good old fashioned bit of blood letting did the trick!!!! Bring on the leeches LOL!!!!! Keep onwards and upwards. Love, Gloria xx |
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hi all Claire, that book is called Handbook of Vestibular Rehabilitation. I got in secondhand from Amazon as it is quite expensive. A lot of it is quite scientific as it is designed for medical students I think so it may not be a great deal of use to you to buy it however I do think it should be compulsory reading for all GPs, ENTs and neurologists and then maybe they wouldn't treat us all like we were making this up! Gloria I am doing the same vrt twice a day. The thing with me is that doing the VRT makes me feel a bit more off balance but it never made me feel horrendous and the way it makes me feel has not changed really all the time I have been doing it. Therefore does that mean it isn't helping me much? I don't know. I feel like I have hit a brick wall as I still feel off balance all the time and I don't know what to do to make it better. What vrt are you doing, did you say you were being referred somewhere for new exercises? I have been more woozy this last week which I am putting down to hayfever. Rather that than think I am going worse balance wise! I just don't know what to think really but it feels like I am never going to feel normal again. Sorry to be so depressing but I am stuck in a rut and can't see my way out. S - if you are still out there I remember you saying that you felt a constant swaying or rocking sensation and your doctor was not taking it seriously. In this book I have it says that vestibular disorders can cause a constant disorientation such as a floating or rocking sensation, it also says that for a doctor new to this field of work such symptoms may prompt an unnecessary psychiatric referral rather than a vestibular assessment! Hope everyone is ok? xx |
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Jemma, thanks for posting that stuff from your book, didn't tell me anything I didn't know already apart from one thing - 'the brain slopping around the skull'. I suffered from this a lot in the early days with this and indeed still do at times and NOBODY understood this. I told my GP at one point that it felt like my brain was moving around inside my head to which she replied 'well it can't be because it is fixed inside your skull'. Well,t hanks very much I think I knew that already. But Jemma I will be getting this book for myself as I think it will be a good tool to have beside me! Take care Sandie x |
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I everyone: It's been a while since I have provided an update. I just thought I would chime in. I'm in week 6 of my Lyme treatment and have made good progress. For the past 6 weeks I've been on 400mg of Doxycycline every day. I also pulse flagyl for 3 days every 2 weeks. I take about 40 pills a day. Majority are supplements and probiotics. Overall, I'm feeling the best I have felt in the past 3 months. I'd say I"m usually 90% +/- 10% most days....yes, I've had near 100% at times. Here is an update of my symptoms: -Anxiety, depression, brain fog, derealization. GONE -GI issues (IBS, etc) that I"ve had for 8 years. GONE -Random muscle aches and twitches in my legs. Almost gone -Jaw pain. Almost gone. I haven't worn my daytime TMJ splint in 3 days. -Balance / dizziness. Gone most days. -Eyes: Still have floaters and weird vision from time to time. -Ears: Still feel full and ring, but it is better. Some days they have not felt full at all. I just met with my LLMD on Monday who is VERY encouraged by my progress. Most of the "lymies" I have met on lymenet.org take months before they are better. The worst part for me is the diet. I can't have sugar, flour, starches, caffiene, or alcohol. All of my favs. Only protien, veggies, and dairy along with very few low glycemic carbs. This is because when you are on antibiotics for months at a time you have no "good bacteria" in your GI track to keep away the yeast/fungus. Eating carbs / sugars will allow fungus to grow. I have just asked my doc to switch meds. The Doxy was working well, but you have to avoid the sun like a vampire otherwise you can get bad, blistering burns. So, she switched me to Biaxin and Amantadine for the summer. Day 2 of the new meds and I feel okay. The best part about this is my anxiety is gone. Stores are fine. I no longer worry what the hell is wrong with me. I have root cause and am focused on beating lyme. It is nasty. The only concern I have now is how long will I have to be in treatment, what will the treatment do to me long term, and will I relapse after stopping? I do believe I had Labs...from Lyme. And am glad those symptoms are subsiding. Now I need to get the others to go away. I hope everyone is doing well. Hang in there! |
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Brad, I got some nasty burns when I was on the Doxy! I couldn't even walk outside without getting burned!! Thanks for posting! Glad you are feeling better. Gloria, Jemma, Sandie, Shirley etc.. how are you all doing? I do hope better as some of you are past your year mark. I am well. Gloria, coming off Zoloft isn't as easy as I thought. I got to the lowest dose and actually started to have that marshmallow feet feeling again. It was just the medicine making it's way out of my system, but it was awful. So I am staying at 25mgs for now. Other than that, I feel great! Working out 6 days a week. No dizziness, no full head feeling, no nothing!! Thank God. One year ago today, I was on my coach in a world of hurt! Keep the faith everyone! Melissa |
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Hello all, I hope you are all doing well! I think I now have Benign Positional Peroxismal Vertigo and I have an appointment with the ENT in 6 days. It has been 7 weeks now, and I am still having extreme attacks of vertigo which last under 1 minute, these often cause nausea. My vertigo attacks only happen when I move my head certain ways. In addition to vertigo attacks, I am often off balence and slightly dizzy when I walk. It is strange because I can feel 95% better 1 minute, and then get a horrendous vertigo attack, just from head movement. My syptoms now seem a little different than they did several weeks ago. I actually think that I had Vestibular Neuritis origionally, and this trauma caused a canalith particle to come loose and lodge in a canal, most likely the posterior canal. I will let you know what the ENT says, I am hoping he will perform the Epley and fix this for good! |
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Darren, It sounds like menieres disease or BPPV. It's not labs. Labyrinthitis doesn't come in waves of vertigo, it just sticks around 24 hours a day for months! If it is BPPV then you need to find a good vestibular rehab therapist that can perform an epleys maneuver to get the crystal back in place in your inner ear. If it is menieres disease, ask the ENT for a diuretic to help control the fluid in your ears. Good luck! Melissa |
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Hey all, hope your all ok Well I had the results of my MRI and surprise, surprise ALL CLEAR. I saw a different ENT doc this time, apparently you get a different one each time you visit, and he again asked my symptoms and said he wasnt convinced it was BPPV as I also get visual and off balance symptoms .. so he took me to another room and performed the Dix-Hallpike maneuver to check for nystagmus. I'm not sure if this did happen or not but I do know that I got vertigo in the first position. He then performed the epley maneuver. Now this was not pleasant at all, in fact it was horrible (sorry Darren). I didnt feel that bad until the last position, which was when i had to move on my side whilst they held my head and then moved my head facing downwards - the spinning was so fast and horrendous I actually cried out. Afterwards I felt really dizzy and off balance but I think that is normal. They made me sit still for 30 minutes before they let me leave. I have been instructed to keep my head as still as possible and to try not to move my head from side to side and to sleep sitting up for the next 4 days. However I had prebooked with my family an afternoon at the pub for lunch as its my birthday on monday. I did sit at the top of the table so not to have to move my head when chatting but my granddaughter who was sitting near me decided to fall off her chair and I leant out to catch her, so now hoping I havent ruined anything as I really dont want to have it done again. The doc said that in 20 per cent of cases it does come back .. oh joy!! My feeling is that I have either got labs or VN and it has caused the BPPV. But who knows .... Claire / Gloria - glad your both feeling a bit better. Claire - the CD is great, I'm not sure if its that but my anxiety is better. I am now seeing a councellor, I had my first session on wednesday and am going back one day a week for the next 6 weeks. I'll let you know how it goes. Mellisa - love your new photos on facebook. Take care Shirley x |
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Hi all, Thought I'd just post and let you know how I'm doing. My husband and I flew to New York City for a 5 day vacation at the end of May. Before we left I felt all right, probably about as good as I have felt in a year. Mind you I didn't have tons of energy, but still in comparison to a year ago it was so much better. The first couple of days we were going from morning till night sightseeing and going to shows in the evening. What a great time! Then the last 2 days my stamina really dimished but I kept pushing on. I think the flight home really set me back a few steps. After we got home I was so fatigued and felt kind of sick and my body felt sore. So back to taking it easy. So frustrating!! It really is 1 step forward then 2 steps back. So the next big milestone was my sons wedding. My big concern was not feeling too fatigued, having energy to visit with all our guests, and wearing heels which can make me feel lightheaded. So leading up to the wedding I was somewhat anxious which didn't help my symptoms and I didn't know if it would be an emotional day for me. Plus being mother of the groom, all eyes are on you. I don't like being the centre of attention. On top of that the bride and groom had chosen an outdoor venue for the ceremony and we get a lot of rain out here on the west coast. So with all these things on my mind it was a little stressful. Well turns out it was a wonderful day. The weather cooperated and we had a lovely ceremony. The previous days had been rainy so all the ladies heels sunk into the saturated grass. Memories that we can laugh at now. I was so thankful that I felt fine that day and really enjoyed myself. My husband reminded me to pace myself and not try and do too much. So I wasn't much help decorating. It was a joyous occasion and the bride and groom were just beaming with joy. I managed with my heels and took them off as soon as I could. I managed a first dance with my son with my heels on and shortly after danced barefoot. It was a casual outdoor setting under a tent so I could get away with it. The only time I felt light headed was dancing with my husband so I sat down often. Gloria, you said your godson? was getting married in fall? My advice to you is rest before the wedding, don't offer too much help in decorating or setting and cleaning up and just enjoy the day. You don't need to be a social butterfly and sit down when necessary. Jemma - the points you made from that book you're reading make a lot of sense. Thanks for posting them. On another note, I've been seeing a traditional chinese medicine doctor since January. The diagnostic tool that he uses is called Live Blood Analysis. Apparently this method is more common in Europe than here in Canada/US. He takes a drop of blood from my finger and analyses it under a microscope which shows up on a computer screen. You can see all the blood cells floating around and by this he can see what is going on. It was a relief to know that he can see that I have a virus. He described this virus as belonging to the same family as mono. So that explains the fatigue! I believe that this virus caused my labs. I have improved in the time I have seen him and taken his supplements to build up my body and immune system. Even though it is a slow improvement. I also have had to alter my diet avoiding dairy sugar and wheat. Of course I can't follow the diet 100%, but I try and do my best. I know there are many skeptics out there who frown on alternative or natural medicine, but I have benefited from it and will continue. So lets all keep hanging in there. |
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God, 7 months of swaying and movement sensations 24/7 please someone reassure me that i wont feel like this forever :( im trying everything i can ive exercised 4 days a week since day 1,taken 7500mg's of ginkgo daily ,worked, and kept very busy while trying to ignore this condition yet its still with me. |
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Hi all, Lovely to catch up with so many of you. Susanne - great to hear from you - I have been thinking how you are what with your trip and your son's wedding. It sounds like a magical occasion and you dealt with everything just fine. It is my god-daughter's wedding in October, but more imminent is the arrival of my husband's relatives from Vancouver. As you say, it is the apprehension of wondering how you will deal with all this that makes me so anxious. I've started to plan food, trips out etc. There'll be between 6 and 8 of us for 5 days!!!! Mostly with me hosting as my husband will be working. So I'm really scared about coping with all this. When this was planned some months ago, I thought I would be well and truly recovered by now (as have a lot of us)! I have had some social events just recently and was thinking to myself that I have got through them but not without feeling that they have all been a challenge and would just love to not to have to think or feel like how we do. I was so fed up I had a glass of Pimm's with my neighbours Friday evening (mostly lemonade, not very strong alcohol wise) but made me feel awful yesterday. One glass!! Jemma - I am still doing my VRT 2/3 times a day. Head looking up and down to the floor, diagonally, then up to the right then to the left and then down to the right and then left, sort of in a slow circular movement whilst doing heel to toe. Heel to toe eyes closed, then same looking right to left and then up and down. I then bend down and look under the kitchen table to the left (!!!!) and same to the right. Whether it is helping, because yesterday felt so bad again (by the way, my year up was on Friday!) I have no idea. The thing is you are loathe to stop just in case it maybe helping. I've started those new anti-migraine tablets - feel strange, so don't know how long I will suffer them. Just so fed up with battling with this and taking all this strange medication, because I have to rely on what the doctors tell me that it is my migraines hindering my recovery. So of course I want to do something that will help. That said I am taking some herbal and vitamin supplements which have a good record of helping migraines, but take a few months to kick in. They are Butterbur and Co-enzyme Q10. Prefer natural stuff to chemical. Just think I'll turn into a green-headed monster after all this!! Darren - good to hear from you. Melissa is right sounds like BPPV. How did your move go? Did you manage? Shirley, sorry you had such a rotten time with the Epley thingy! It does work though and once you're there, you'll be fine. Sooner you get tis done Darren, the better for you. Shirley let us know how you fair over the next few days and if you manage to keep still!!! Melissa - lovely to hear from you. Another person I spoke to who had this, said she recovered but then had a little problem coming off the anti-depressants, but she did it and is fine now. You just have to do it really slowly over a long period of time. All in all I am better than I was with blips. Still know i have this day to day, but in the main get around and do my normal stuff - just as I said earlier though - I do have to think about every occasion and pace myself. Boiling hot here in the UK - everyone is glued to their television sets for the football match between England and Germany this afternoon. Don't hold out much hope though. We're not the team we used to be I'm afraid!! Anyway, lovely to hear from you all. Claire - hope you are OK? Love, Gloria xx |
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Hi again, Had an afterthought - You see, my brain just isn't working properly. Forget so much these days. Susanne - forgot to ask - you used to suffer with nausea and sickness as well as muscle ache. Do you still get any of those symptoms or is it just lightheadedness and tiredness now? Reading back to Darren's post about how he gets nausea and how I sympathise so much. Nausea has also been a big part of my symptoms. Not so much now but did feel a bit off and sickly again the other day, but it did pass unlike before when it would last for days. Speak soon. Gloria x |
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Melissa, thank you for your input, my vertigo is certainly not 47/7 because I will feel completely normal after sitting still for a few minutes. So as you said, it is highly unlikely that these symptoms are from Labyrinthitis. Luckily, I am confident that I do not have Meneires because I do not have tinnitus, hearing loss or pressure in my ears, so that is reassuring! Shirley, thank you for sharing your experience with the Epley maneuver. In a wierd way, I actually hope that the Epley makes me have a vertigo spell because that means the crystals are moving, and will end up where they dont cause problems! I also think that Labys or VN was the cause of my initial vertigo, and this would have caused the trauma in the inner ear that would knock a otoconia crystal loose, and it found its way into my posterior canal while I was sleeping. Hello Gloria! Coincidentally, my family has put off moving for 30 more days, which is a great relief to me! I will see the ENT on Thursday, I cannot wait because lately I have had to rely on Meclizine just to make it through the day, and I cannot sleep unless I am taking meclizine because laying down really agrivates my vertigo. |
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Hi All, Not been feeling too good since having the epley done, is this normal do you think? I seem to have gone back many steps, almost like the early days, really light headed and off balance and DIZZY !!! Hate this, its my birthday and I am supposed to be going out to lunch with my daughter, but really dont think I will be able to walk the distance to get there, anxiety has really kicked in, another thing I was getting over that is back. Oh joy !!! |
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Gloria - Yes I occasionally still get nausea, but is usually shortlived. My muscle aches are much more on the mild side and feel more like sore muscles than achy muscles. Today I'm dealing with weakness and fatigue. My ears feel full and ache just a bit and my head feels like I'm in a bit of a fog. Better days ahead, right? |
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Hi everyone Glad people are finding the comments from that book useful. It is nice to get some scientific validation for our symptoms I think. Sandie thanks for posting, I have to say I have never felt the brain sloshing around thing thank goodness but it just goes to show how many weird sensations this thing can cause! I have however been having this stabbing pain in my ear intermittently like you and I can only guess that is the nerve or muscles inside the ear. Hayfever season is in full swing so maybe that has something to do with it. Gloria good luck with the new meds. I get headaches and head pains every few days or so. They haven't been anywhere near as bad now I am not working but I do find that if I push myself to do things, ie conversations, shopping etc I can feel the muscles at the back of my head and neck tighten and the pains start. Also I can get the pulsing in my ear which I think is the muscles contracting. I am still swirly headed most of the time and never feel fully normal but like you am trying to do what I can within reason. I admire you for having all those relatives round and hope you cope with it all well. Susanne, great to hear from you and so glad you got through the wedding so well. I dont think i could have done that but it shows you are making real progress and that must lift your spirits! Shirley I dont know a lot about the epley. I remember my GP telling my that the ENT would do this to me a year ago and it would probably cure me! I knew for me that nothing like that would work but it is worth a try. I do hope it has not made you worse, I am sure it hasn't but with this labs things can go worse at the drop of a hat for no apparent reason. You will improve!! Well England are out of the World Cup - you were right Gloria! Andy Murray is still in Wimbledon so here's hoping he does well. I remember watching Wimbledon on telly last year and trying to figure if I have improved much since then! Really hoped I would have been over this now but not so. Anyway as my mum would say, Hope Springs Eternal! Don't give up!!!! xxx |
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Hello everyone, Shirley I really hope you managed to have a good birthday. I had a bad week 2 weeks ago when I felt like I was right at the beginning then this week has been really good only feeling woozy in the evenings & i am working for my husband this week in the office as his secretary is on holiday. I still have no idea why we feel so different from week to week its so frustrating. i imagine you must be feeling the after effects of the epley, hang in there & just rest as much as you can :( Gloria I feel for you with the entertaining relatives problem. I hope you can manage to get through the week okay & then just collapse at the end when they've gone!!! You must be rattling with all your tablets. I hope they are working out okay I know what you mean about having to trust the doctors. I still worry that I may have something they havent noticed & maybe they were wrong all along, have to kick myself when my thoughts start wandering like that as it does no good for the anxiety!!! Nice to have you back Jemma hope things are ok for you. Must be a relief for you to not be working at the moment, hope you are enjoying some time to yourself :) Everyone else on here its nice to read about other peoples situations & symptoms it really helps us to feel like we are not alone. Hope my working week goes ok & doesnt set me back!! Love to all Claire xx |
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Shirley- I have heard some cases of people feeling dizzy and off ballence after the Epley maneuver. It is possible that you would benefit from having the procedure performed once or twice more, because sometimes it doesnt work the first time. If it were me, I would perform it by myself, but if you are apprehensive, I would encourage you to see your doctor once again. |
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Hi Darren - you may be right in that I might need another procedure done - doing it myself is not an option as I am so frightened of the vertigo and do everything possible to avoid it. I do feel better today and am wondering if its my brain having to compensate all over again. I'll let you know how I get on over the next few days. Claire - thank you for the birthday wishes on facebook, I did manage to have a good time in the end, although I did feel exhausted by the end of the day - we went to a thai restaurant which wasn't too crowded so I managed it ok. Glad to hear you are feeling better - its so wierd how we can feel good one week and bad the next and visa versa - you just never know where you are with this thing. Take care Shirley x |
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Hi all, Shirley - a belated Happy Birthday! Am really glad you were able to go out and enjoy yourself. Mine was a couple of weeks ago - to coincide with my year of labs! Certainly didn't think I would be celebrating (if that's the word) a year of having this nightmare! Anyway, many happy returns and nothing but happiness and good health for you from now on! Darren - good luck with your ENT appointment (coming up soon?). Do let us know what happens. Jemma isn't it weird about the head pains and stuff. The muscles behind my ears and at the base of my head are like tight elastic bands. I took one of those migraine tablets and am afraid they are now in the rubbish bin! I know the doctors are going to throw their hands up in the air at me, but will not be taking any more meds. I just can't carry on having to deal with labs and all the weird side effects of these tablets. So, am on 2 natural supplements which the consultant did say I could try as they have had a good press. One is Butterbur and the other is Co-enzyme Q10. The only thing with that is that you have to take them religiously for at least 3 months to know if they are doing any good. Rather try that first than all this wretched other stuff. So,it's going to take me longer to recover because of my headaches - well, after having all this for a year, and still here to tell the tale as they say, I think I can accept that fact!! Went out with a girlfriend last night. Just the 2 of us for a meal and catch up on life. I didn't have any alcohol after my last glass of Pimm's the few days before had such disastrous effects. Well, even having to concentrate and just chat for about 3 hours sent me completely off again this morning. So even to go out for a quiet chat seems impossible!! God or someone give me STRENGTH!!! Claire - you're a brave person to work a full week, plus looking after the kids and having this. I do hope it doesn't effect you - don't be having a glass of wine when you get back after a day in the office!!!!LOL! Take care all, Love & hugs, Gloria xx |
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Gloria - I still occasionally suffer from nausea, but it is shortlived. I had forgotten about my constant muscle aches. Now they are more of a sore than achy feeling. |
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I have an interesting theory, Ive been looking at the symptoms of Mal De Barquement Syndrome, my symptoms are identical to that condition( My swaying stops when im in a car, train, plane) yet my rocking/ swaying didnt start after a cruise it started after my room spinning true vertigo attack. Is it possible that the spinning attack triggered MDDS? Perhaps someone could clarify. |
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Hello all, I hope you are all doing well! As for me, Tuesday night my vertigo was unbearable, I could not move at all without triggering it, and I was conviced that I had BPPV so I decided to treat myself with the Epley instead of waiting for my ENT appointment. The Epley did successfully aleviate all of the vertigo symptoms after the first try. However I was left with some lightheadedness and dizzyness when I moved my head around. I have since performed the Epley 3 more times and I have gotten a little better every time. I saw my ENT doctor today and he confirmed that I do have BPPV, and he was impressed that I diagnosed and treated myself. He referred me to a physical therapist who will perform the Epley in order to ensure that all of the otolith crystals are gone. I have felt great ever since performing the Epley, and it was scary the first time, and it is against all intuitions, but it is so worth it! |
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Shirley, I hope I can encourage you to try the Epley a few more times with your doctor. My ENT said that it is expected for patients to require the procedure between 1-3 times for maximum results. If your problem is indeed BPPV, I hope my experience can serve as an inspiration to you. Gloria, I totally understand why you are apprehensive about medication. I have needed Meclizine almost every day for the last 2 weeks before performing the Epley, and I can say that I do not like being on medication! It is good to hear that you were able to get out, but I hope you recover from this overexertion quickly! Activities like this may even be just what you brain needs to compensate. I hope those natural supplements work well for you, keep us updated. |
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Darren you are so brave, I dont think I will be able to perform the manouver on my own as the vertigo was so strong, I felt like I was falling into some kind of vortex. I find it really scary. I, like you, am experiencing lightheadedness and dizziness when moving my head so I think you are right in that I need to have the manouver done again. Reading your story has given me hope so thank you so much for posting it. I am still sleeping on several pillows and I am still getting dizzy when lying down and I am also experiencing the old fatigue again. Hopefully this will all pass. Hope everyone is ok Shirley x |
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Shirley, before I performed the Epley I could not lay down without agrivating horrendous vertigo, I often could not get to sleep till sunrise since I even had problems laying at a 35% incline. |
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Hi all I just thought I would pop on to reply to S who mentioned Mal de Debarquement Syndrome. It is a coincidence because only a couple of days ago I read an article in the Daily Mail online about a woman who went on a cruise and has been suffering from MdDS ever since. It is now 9 years on and she is still suffering. I don't want to scare you S but it may be worth reading. The symptoms sounds a lot like labs but it is not caused by damage to the inner ear but rather that the brain has tricked itself into a feeling of constant motion. For most people it resolves itself but there are no set timescales. S - did you go on a cruise or a flight or something just before this started? If not then it probably isn't MdDS because mine isn't I'm sure but like you I feel better when I am moving ie in a car which seems to mask the off balance feelings until I come to a stop then I can feel it again. Gloria - I am just the same. 3 hours talking to someone would be really tough and set me back a lot, in fact I don't know if I could do it. I have had a few 'good' days but I know now that it won't last so I am expecting to regress again very soon as always happens. At least it gives you a bit of hope though. Shirley and Darren let's hope the epley is just what you need to get you both back on track! Claire how are you doing? Take care xxx |
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Happy 4th of July!! I know in Europe you of course do not celebrate the 4th! Here in America it is a huge holiday. Last year on the 4th of July, I couldn't talk and I felt terrible! I MADE it!!! It's been a very long road! Gloria, I can't believe that you are still suffering with this crap! I really think you need to keep fighting to find a physical therapist that can relieve your neck muscles. Those muscles are are 100% responsible for your problems right now. Shirley thank you for the compliment. The photo was taken in Captiva Island, Florida. Keep the faith everyone!!! Melissa |
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Hi everyone, Well I survived my week in the office, hard work working for a living!!! Wasnt too bad although struggled a bit with using a pc for so long as that usually make me very dizzy at home. Gloria I didnt turn to the bottle but did actually treat myself to a little glass last night :) was ok with it too. Shirley sounds like your BPPV is a real nightmare I still wonder if I might have it even though I had the manouvre to test for it twice & was negative. I cant even lie on a garden chair without spinning & if i turn quickly in bed then I too almost fall down that vortex you mention. Other than that my dizziness is not too bad although I also think I have learnt to live with it better now so feels almost normal to be dizzy!!! Off to an open air concert in the forest on Thurs with my 12 year old although I may stay away from the speakers. Its 'Scouting for Girls' if you've heard of them? Jemma nice to hear from you, as you can see I am doing 'ok'. I start my 40th Birthday celebrations next weekend (bday 18th) I am going to the spa at Centre Parcs for the day with 9 friends then back to mine for a BBQ luckily we live near Elvedon in Suffolk so a lovely place to go for a spa day. I intend to have a few glasses of something nice & fully expect to pay for it the next day :) Anyway wishing you all a lovely sunny weekend Claire x |
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Hi all, Melissa - how fab to hear from you & really pleased you are at the winning post!!! Happy 4th July to you. I am doing much better and my neck muscles are easing off. Jemma - I read that article too - scary! Even though I have never felt so ill in my life - I am 'glad' that I had really bad viruses (stomach and chest) when all this came on rather than it appear and didn't know what caused it. Like you, have had some 'good' days - which have given hope. That said yesterday and today I had symptoms reminiscent of when all this started but much less. I personally think that the virus that causes this, actually, for some of us, it remains in the body and keeps rearing it's ugly head but gets weaker all the time. It is similar to when I had Glandular Fever in my teens. Although I got better from the initial illness, it remained in my body causing tiredness and flu like symptoms for nearly 2 years. Just another theory!! Thing is I was feeling really YUK yesterday, and quite dizzy, but today feel quite a bit better. It all seemed to start again on Thursday night with the ear fullness and ear ache thing. Clicking in the ears and then more dizzy. My neighbour's friend who had this 10 years ago, is visiting my neighbour next week so I am going to have a chat with her. Apparently it took her a good 2 years for it to fade away. So will try and glean some more info - we must all be past saturation point with info LOL!!! Darren - sorry to hear that your BPPV has really made you feel rubbish and hope that your next visit to the physio will put an end to all this nightmare for you. You were very brave to perform the Epley on yourself! Shirley - sorry too to hear you feel not great again. Get that Epley done! Its horrible when you have a good patch and then back down that old ladder again to square one. Drives you nuts doesn't it?! Claire - try and have a bit of rest this week so you enjoy your celebrations. If nothing else, I have started to learn that I need to take it easy for a good few days before I do any socialising. Anyway, that said, I am back off to finish all the painting in our guest room for when my relatives come week after next! Just hope I don't have any more little relapses again. I need to feel improved at least until the 19th July - too much to ask?! Take care all. Love, Gloria xx |
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Hi All, Claire: How did the concert go? Gloria: Good luck with the painting - do you want to come over and do some of mine - HA ? Darren - I am so struggling at the moment with this vertigo. I tried to sleep on one less pillow and everything started spinning and I felt terrible after. Now back on 6 pillows so almost sitting up when sleeping. I have no idea why I have gone backwards. Before I got the pillows down to 3 without the spinning starting but couldn't go lower than that. I am wondering if some other crystals came lose when the doc did the manouvre and they are now causing me grief. Can you now lie down flat without the vertigo starting? For me this would be a dream come true as I haven't been able to lie down properly for 10 months now and oh how I miss it. Update: I phoned my ENT dept as I hadn't received a follow up appointment and was told that the next appointment would be in September. The secretary said that if I cant wait that long I can go into A&E and get them to do the eply for me. I think its ridiculous the length of time you have to wait between appointments - the doc said come back in four weeks - well it will be more like nine before I get back to see someone. At this rate this could go on for years !!! Oh well enough of my rant. Hope everyone is ok Shirley x |
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Hi everyone, Lovely weather :) Shirley, I survived my concert amazingly as has been a bad week for me dizzy wise. Was a good night & my daughter loved it so was fun seeing her having fun. Hope you are coping ok with your BPPV The ENT dept at all hospitals seems to be so busy, I supppose you could always try & badger them for a cancellation ring every day maybe. You never know. Does anyone else find themselves looking at other 'normal' people & wishing they could feel the same. I do this all the time knowing that they have no idea how I am feeling as I look so 'normal' Gloria I have taken your advice & tried to rest as much as possible this week. looking forward to my spa session today with my buddies hope it will distract me from my symptoms. Was starting to think I was improving a few weeks ago but now not so sure. Maybe next week I will have a batter week & start to feel more confident again. Have my VRT appt on Thurs so probably feel worse after that anyway. will let you all know how it goes. Hi jemma hope you are ok & Melissa so glad you have (hopefully) beat this now enjoy your summer Bye for now Claire xx |
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Hi all, Good to hear from you Shirley and Claire. Seems quiet on here at the moment - everyone enjoying the weather here in the UK or not having particularly good patches? Have had an up and down week - not too bad all things considered. Have been painting like mad - ignoring how I feel and probably have overdone it! This coming week is when I have my relatives over from Canada. Looking forward to it, but dreading it at the same time. I know you all will understand exactly what I mean. They don't know what has been going on with me the past year and I don't want to go on about it because you do feel like a broken record and very boring for others! Shirley - am so sorry you are having a rough time with your vertigo. I would go to A & E. September is a ridiculously long time to wait. If you don't mind waiting in A &E for a few hours (don't know what it's like where you are) but it is a 3-4 hour wait in my neck of the woods. The pillow thing for me was similar - it was months before I could lower my pillows and because every now and then I wake in the night feeling woozy, I have to prop myself back up again. Claire - so glad you enjoyed the concert. So know what you mean about looking at others and thinking "I was like you once"! Your spa session sounds wonderful. I treat myself every week to having a friend's friend who does beauty therapy come round to give my upper back, neck and shoulders a massage. She also does other stuff like waxing my legs. It's great to have someone come to me whereas before I used to have to go into town. My neighbours come in to my place to have the same. I'm sure I see my neighbours across the road curtain twitching when they see all these ladies trot into mine in their dressing gowns!! I'm just hoping I feel reasonable this week and don't slip backwards - as we all know that's what happens - only I just need to cope. I hate not being in control and cannot understand why you feel OKish and then next day - Wham - back down that old ladder again. My hubby is working and so won't be around much to help out either - so everything crossed. Jemma - hope you are seeing better, longer periods than recently and being at home has helped you progress. Darren - hope your Epley went OK and has been the answer for you. Claire - when do your girls break up for the summer - any plans for hols etc? Take care everyone. Speak soon. Will try and briefly report in to let you know how I'm bearing up with my visitors! Love & hugs, Gloria xx |
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Hi Gloria I know you understand exactly what I mean as you all do on here. Very hard to explain to the other people in our lives, probably why we feel like we do about boring others with it & tend to just keep quiet unless someone remembers to ask!! Anyway I had an amazing day yesterday I have some lovely friends & my Hubby & girls made it all much more special. I actually felt very good all day & drank a few glasses of bubbly too. Felt no different today than normal so maybe I am turning the corner (shhh!!) Looking forward to more celebrations next weekend when I actually reach That dreaded number. VRT on Thurs too so lots going on. My girls have 2 more weeks of school then 6 blissful weeks of no school run, no rushing around a camping trip & weekend at Centre Parcs. So lots of positive things to look forward too. Onwards & Upwards xx Claire |
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Sorry Gloria, want to wish you luck for next week. It is going to be a major effort for you & hope that maybe when your Hubby gets home from work you can quietly slop off & get a bit of rest.Hope it goes okay for you Lots of love & positive thoughts!! Claire x |
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Not so Smiley these days... Day 3 of this vertigo hell. Diagnosed with Labyrinthitis (maybe), but my ears checked out fine. I have to go do some blood work to rule out other things It all started as being nauseated. All food grossed me out so to speak. Next thing ya know, I wake up and I'm staggering around like I'm half in the bag....Nothing but dizziness. No ringing in my ears, popping, fluid, painm inflammation or anything else. I wasn't sick. in fact, I haven't been sick in a long long time... I have done some research. Advised to see an ENT, Otologist or a Neurotologist to make certain this is indeed VL or Vestibular Neuritis and not something else. Apparently there are a number of tests you can do, one being a VEMP test? I have been told that "Goldenseal" (anti-bacterial/anti-viral agent in the herbal arsenal) + a de-congestant known as "Plantago" work well for fighting this dizzy disease off! Also, "Gingko Biloba" works well too. I have to buy me one or all tomorrow as it is Sunday and everything is closed now. I am hoping I can beat this as it has already done a number on me in such a short period of time... ismiley@live.ca |
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Hi all, Claire - thank you for your good wishes. Just waiting for everyone to arrive now. But would you believe it - today feel really swirly headed and tight head muscles again. Quite convinced because have done too much over the last few days and not resting. Just can't be done. So am taking a quick few minutes out. Thing is, have been feeling not too bad over the last week or so and because of that, you think you are back to normal and then go back to rushing around like a whirling dervish. Had an ear infection and the old blocked ear feeling last week - should have recognised that signal! Anyway, what can you do, but go with the flow! Claire so glad you had a great day (love the piccy!). Enjoy your week - mine is bit of a distant memory now!! Smiley - sorry you feel so rubbish. I tried all the herbal stuff. At the end of the day if you have labs - it is a stubborn little thing and will go of its own accord. No harm in trying though - at least it will help your immune system and keep any other bugs at bay. Good to get things checked out though to make sure you have the right diagnosis. Claire thanks again for your lovely wishes of support. Catch up soon. Love, Gloria x |
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Hi all Hope everyone is doing ok. I have had a good few weeks. Still not normal but been doing things around the house and feeling ok. I definitely think stopping work and resting has helped with the headaches and fatigue. I find I can cope with things in short bursts without feeling worse but I cant spend too long doing things, eg going to the shops, speaking to people etc. I do know that it is so up and down you cant rely on anything though! Gloria - good luck with your visitors, hope you cope with it all. I will be thinking of you. Do let us know how you go on. By the way, where are you up to with treatment at the moment? I am due to see the Chronic fatigue therapist on Thursday so that will be interesting. Claire, glad you have had some good times. I remember what you said about that vortex feeling and I have started having this thing where when I am about to fall asleep at night I feel like I am falling or spinning and jump with a start and wake up and then it can happen a few times before I fall asleep, horrible. I have also got about 25 what appear to be small red insect bites. The itching is driving me crazy and I don't know what caused it. I am wondering if it is hives or some sort of allergy but I don't know. Just another annoyance to deal with. Take care all xx |
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Hi Jemma, So lovely to hear from you - I have been wondering how you are getting along. I can't believe how yesterday all the old symptoms came back with a vengeance and here I am today feeling quite unwell again. Like a few of us on here, I get the upset stomach and shaky - just like flu. It's not, but then have got really swirly headed again. As I said in my last post, I am sure it is because I have been doing too much and apprehensive about dealing with people we don't often see. You want to make them feel welcome and be entertaining. It is the nausea for me too which makes me feel really YUK. Anyway, will just have to take things in my stride. As far as treatment, Jemma - I'm not on any medication - that said last night I felt so bad I had to take a Stemetil. I decided all that weird medication was only masking symptoms. So I take vitamins and am going with the flow as they say. I try to do a bit of VRT everyday - again I think maybe I have had a relapse because that has gone by the wayside the last couple of weeks because of being so busy. I just don't understand what causes it to come back so to speak. For me I have has this now for 13 months - maybe 13 - unlucky LOL!! Good luck with your therapist on Thursday - will be interesting to see if they come up with anything positive other than well, you've given up work - you should see an improvement. Unfortunately, you can't help but get cynical with the medical profession after what we have all experienced! Your rash maybe Prickly Heat rash - I used to get that and would always appear when it had been hot and humid. Anyway, great to hear from you Jemma - keep in touch. Love & hugs, Gloria xx |
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Hi everyone, Jemma nice to hear from you. I know exactly what you mean about that falling asleep feeling I have had it a few times & especially right at the beginning. I hope your appt with the therapist went okay today & was helpful to you. I think giving up work has probably been the best thing for you I know I couldnt hold down a full time job at the moment (except for that mum job) I had my VRT appt today was quite positive told them that I am going to the Gym regularly & walking, they said this is the best thing I could do as it all helps the brain retrain itself. They also said that I was very steady when I did the VRT & have made good progress, I suppose I have when I think back but still feel like its such a slow progress & see it being like this for several more months. Only 1 week left of school now so have the long 6 weeks to cope with, lucky my girls are that much older now & more self sufficient. Gloria I really hope you are coping with your visitors I am sure the prospect of it all has made you feel much worse. I am like that its almost like you are preparing yourself for the worst & hopefully its not as bad as you thought!!! Love to all Big '4-0' on Sunday so hope to be thoroughly spoilt Claire x |
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Just a quick update. It is 1 week later and 99% of my dizziness is gone, so I stopped taking the Serc (16MG). The only time I see the dizzy effects return is when I am doing something very physical. I do feel hazy and foggy at times, but hopefully that will disappear altogether as well. What a nightmare this has been. I mean, this happened to me and the research I did online presented me with nothing more than a morbid, grim picture. We need some positive stories here to counter the negativity; a ray of light to help us "worry warts" cope and realize that there is light at the end of the tunnel. I truly believe that there aren't as many "happy endings" because when people get better, they tend to forget as it no longer applies to them. This really gave me the scare of my life, so I wanted to make sure that I didn't end up a statistic (negative of positive) when it was all said and done. To those of you that are confused and/or suffering, think positive and just focus on getting better. Remain positive; you CAN beat this. |
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Hi everyone! Just thought I'd pop back in and say hello after a while away from this place. Last week I had to have a couple of days off work after feeling really rough and dizzy for a few days, but that aside the last month has been pretty good overall - I'm still not perfect, but I'm not all that far off most of the time and I can live with the symptoms, so I guess I'd say that I'm 95% recovered if not more after eight months. Most importantly of all, I can enjoy the simple things in life again like eating a good meal or going out shopping without worries. Anyway, I guess I just wanted to give a little lift to anyone here who is still suffering - Things *do* get better, no matter how long it takes, but make sure you keep active, read up on VRT and give it a try (and stick to it whether you think it helps or not!), and learn not to be afraid of those dizzy days or moments, they're all part of the learning and healing process. Finally, don't be afraid to tackle the anxiety that comes with this kind of illness... I'm sure I would have recovered far, far quicker if I'd found help in getting over this sooner, as once the anxiety faded so I found myself having virtually symptom free spells for weeks at a time rather than days. Good luck to you all, and keep fighting! |
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It has been 3 weeks since I performed the Epley and I am doing about 98 percent better from PBBV symptoms. After the Epley, I still felt lightheaded and imbalenced quite a bit, but these symptoms have tapered off to almost nothing over the past 3 weeks. I notice the lightheaded feeling sometimes when I dont get good sleep. Shirley, sorry to hear that you are suffering so much! It sounds like your BPPV has recurred after laying down, which is not something to be worried about. This actually happened to me after my first Epley, after a few days I tried laying down on 2 pillows and the symptoms came back, but I was able to get rid of them by performing the Epley again. From what I have read, after the Epley is performed, the otoconia are returned to the utricle, where they will hopefully be reabsorbed by membranes or they are disolved by the fluid. If these otoconia do not get absorbed quickly, then it is possible that they will find their way back into the balence canals. From my experience, I think this took about a week for me. I saw the physical rehabilitation doctor and she said since I cured my BPPV, that I just need to perform 2 Epley maneuvers a day until my remaining symptoms of lightheadedness and imbalence subside. |
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Hi all, Firstly - HAPPY BIRTHDAY CLAIRE! Hope you are having a wonderful day and feeling OK. Am thinking of you! How great to hear from you too Andy H. It really is good to get an update from those who have not been on the site for a while - unlike me - this site is my security blanket!! You are very kind to send such positive wishes. I remember you had the ear-ache, blocked ear thing going on as well. Exactly like me, and having had a relapse (again similar to your situation) these last few days, the ear-ache, popping and fullness are all back. Did yours ever clear up? Anyway, glad you are feeling loads better. I have to say the last few weeks - apart from the last few days - I have seen a much better improvement generally, but as you say not completely 100%. One day I'm sure! Also, you talk of VRT - are you doing exercises consistently every day? I do mine most days, but to say I am so bored with them and the fact I still get dizzy - does make you wonder if they are working and whether we would recover anyway! Darren - you must be feeling quite relieved that you can see so much improvement. So how do you perform the Epley by yourself? Is it where you sit on the edge of a bed and throw yourself side to side? Anyway, onwards and upwards - will the move now take place? Good luck with everything. Smiley - glad you have improved so quickly. To have had this for just over a week and to be at such a good stage of recovery is amazing. Hope it lasts for you. Sandie - if you are looking in - still think of you and hope all is well your end. Jemma - hope you are still experiencing better times. Claire - let us know how your big birthday day went! Love to all, Gloria xx |
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Just as an 'add-on' - at last our visitors have left. Although lovely to see them again, it was EXHAUSTING! Probably not helped because of the little relapse just before they arrived - so really had to battle through. Feel quite proud that I managed to cook, entertain and take them sightseeing. Feel v.v. tired now! It would have been lovely to have done all that, enjoyed it and have been 'normal'. Instead of having to treat each day as a huge mountain to climb up. They've invited us back to Canada year after next. I just so hope I won't be having these mountains to climb by then. My ear is so blocked and clicky again - had antibiotics and ear drops again. Still the same full feeling so it must be related to this relapse again. Mad mad mad! Hugs, Gloria xx |
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Hi everyone Gloria so glad you managed with all your visitors, well done. I couldn't have done all that! I feel tired just spending an hour at my parent's house. Isn't it weird about the ear thing, it must all be part of this. I still get the crunching sounds but not been too bad at the moment. I keep going, seem to have a few reasonable weeks then go a bit worse again but overall I feel better than I was and less tired after stopping work. Claire hope you had a great birthday and did something really nice for the day (and got loads of pressies!) Well I went to my CFS/ME appointment last week. I was there 45 mins. The therapist did not have my notes to hand which didn't help but she seemed to know about techniques for helping with ME although in my case I don't think I have that. She told me to divide my days into blocks of 10 minutes, do something mental for 10 mins, then rest totally, then something physical for 10 mins, then rest totally etc all day. It really isn't practical because it would mean I can't go anywhere or even speak to my mum on the phone for more than 10 mins at a time. I do kind of use this technique anyway throughout my day just not every 10 mins. She did say she would see me again in September and I could go on these group sessions for CFS/ME and they teach you relaxation techniques. Anyway onwards and upwards. A bit tired and swirly today but coping ok. It's hot here in the north west of england. How is everyone else? Jemma xxx |
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Hi Gloria Yes, I do still look in now and again, mainly to see if you and Jemma are still here and it does sadden me to see that you still are. As you know, I am in my fifth year with this. I relapsed last year in Jan 2009 and by August had to give up my job. I was indeed much better in August than I had been in January (my relapses take months to get back to what is 'normal' for me), but I could see no end in sight for this awful condition. However, since I have given up work I have gotten a lot better. My worst symptoms coincide with the 'time of the month', but I do get some really good days now. Better than I have ever had. I read somewhere that this can last for five years and this seems to be the case for me though I am by no means completely recovered! You and Jemma seem to follow the same course - feeling better and then feeling worse - one step forward, two steps back, but that is what it was like for me (and still can be). Think positive, and keep fighting - I know you already do! Take care Sandie xx |
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Hi all Thank you I dis have a lovely birthday & yes Jemma I was thoroughly spoilt!!! Wish I could be 40 every year from now on. The good news is I managed to have 'several' drinks & didnt suffer too much afterwards. The last week for me has been very progressive I have my new VRT excersises & am trying really hard to stick with them 2x a day. I obviously like most of you dont like to say this too loudly as, as soon as we see progress we are knocked back down again, but I am feeling a lot more positive. I have kept up all the excersise too gym,walking & cycling I think all this has helped although sometimes is a real struggle to get through. So fingers crossed I may be turning that long awaited corner. Lets see what that horrible week in the month does to me as that is a sure sign I may be recovering if I get through that ok. Jemma, Gloria hope you are both feeling ok & well done for getting through your week Gloria. Nice to see updates from others on here too Andy seems to be doing well so good to hear good news. Anyway love to you all Claire x |
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Hi all. Long time no talk to, as Sandie says, sorry to see that most of the regulars are still here. Happy birthday to Claire, hope you had a good day, sounds like you did! Smiley - the Serc doesn't really work that well for a lot of people and you are supposed to stay on it for weeks or months to get the full effect of it. I get the same as you - anything strenuous brings on the symptoms, lifting weights is out of the question now and it kills me cause I used to love going to the gym. It sounds like you are well on the road to recovery though, so best of luck with that. As for myself, I've been so see another physio a couple of weeks ago and she's very good, I got a VRT program specific to myself made up. The volume of VRT is quite high, she reckons that she has seen people with 60% damage make great progress in 3 months (I had 15.2% on the caloric test) so am going to stick with it. Still get dizzy from time to time, but only lasting hours now rather than days and weeks. Sometimes it's hard to see progress from day to day, but when you look back to how things were 6 months or a year ago, there's definite improvement there. It's slow but it's happening. 18 months in now. I'm in college at the minute, doing a maths refresher course ahead of going back to university in September, the people in the disability office are very accommodating, so I'm going to give it a go and see. It's tough - my memory and concentration are still quite bad, one of the many symptoms of this thing. No posts from Melissa or DC lately, hope you are both ok. Anyway, just thought I'd pop in and say hello to all. Take care, Gary. |
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Hi Gary, yeah Im doing Ok, most of my balance issues have subsided still some minor imbalance from time to time. Im going through a bout of depression at the moment and its a real struggle, I feel I have made some improvement but hopefully it will lift soon, I have dealt with it throughout my life and it normally lifts eventually, I may have to look at medication again down the track if I cannot overcome it naturally.. Stay positive everyone, this imbalance is only temporary it will get better.. DC |
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Hi Gary, Nice to hear from you. Glad that you are at least having good days and your dizziness is not lasting as long as before. Get stuck into that VRT! YOu are so lucky to get someone who can help you and give you specialised exercises - I was just handed a standard sheet at my ENT. Hope everything goes ok with the University course. My son has just completed his third year at Oxford and got a first for the exams he has just done! So proud of him! It means that his final year will be a lot easier as it all counts towards his final marks! He is doing Science Engineering - involves a lot of maths! Take care SANDIE X |
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Hi,I am new here. I have been suffering with labrynthtitis for over 3.5 months now. At first I thought I was having a heart problem, I ended up in the ER they told me my white blood count was high they said I had a virus, did an EKG it was a little off they wanted me to go in for a stress test,I did not have a fever but I felt very weird. I asked for my test results and told them I had an appointment with my Dr. in a few days. The next morning I woke up I was spinning, I was so nauseated I thought I was going to die. It felt as though I was going down the biggest part of the roller coaster over and over and over. Went to The Dr. the next morning she told me I had labrynthitis, it will make you panicky and pukey. She put me on prednisone, meclizine, and gave me a shot of phenergan. I had no idea what this was or that 3.5 months later I would still be trying to get over this horrible event. After two months of little recovery I got a second opinion the Dr. told me Labrynthitis does not last for 2 months. I then saw a neurologist I had and MRI, MRA, EEG. All came back fine. So my sons school teacher told me about a hearing and balance center and how they can help with dizziness. I signed my self up and so glad I did. They did the rotating chair, caloric testing and hearing test. The caloric testing show I could be having silent migraines and the rotation chair showed blood not flowing correctly to the left ear. The audiologist wanted me to come back in two weeks because she felt that I was on the tail end of what was cuasing this. I went back and the test had all improved but during that time the biggest part of the dizziness had left. I am now doing VRT my therapist Jocelyn is awesome. She told me that my brain has compensated a lot but I am over balancing with my eyes. She said when people are over compensating with their eyes they have a hard time going into big stores like walmart because their is too much going on too many people to many isles that are stacked too high. It overwhelms the brain because you are trying to balance with your eyes so you start to panick or feel anxious. It's not that you are going crazy, also you will have a hard time with movie theatres, some with driving. She said so much more but this post is already too long. She also told me that their is a psychological component to the dizziness and it was very normal.I am so thankful for this sight and your stories it has helped me to cope with this nightmare. Stacy |
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Hi Everyone: Just thought I would post an update. I'm in week 10 of my lyme treatment. The lyme turned out to be the root of my labyrinthitis (it can cause Labs.) Overall, I'm much better. I'd say 90% most days give or take. My dizziness is pretty much gone 95% of the time. Stores are no longer a problem. I have flown regularly for work. Fatigue is gone as are sweating, chills, hot flashes, anxiety and depression. I still have eye floaters, ear fullness, and some mild tinnitus along with some mild muscle twitches. But these are all common lyme symptoms and are improved. I'm not trying to hijack this board, but I do encourage everyone who may have eye floaters, tinnitus, sweating, chills, flushing, etc, to get a lyme test from IGENEX. (Don't do the regular tests as they are wrong more than 50% of the time) That goes for you folks in Europe as well. I have met many lymies from the UK and Germany. Check out www.lymenet.org Flash Discussions There are several folks there who were originally diagnosed with Labs or Menieres. THere is hope! Keep the faith! |
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Boy time flies when you don't have to think about labs all damn day long!! I made it!! I am 100% symptom free now! I feel just like my old self! No swirly head, no off balance feelings, no nothing!!! Ok So I have had a small moment to read some of your posts. Gloria, God how much more and how many more months can this go on? I hope that having company was a bit of a distraction for you. How has your summer been? We are going to the beach Saturday for a week. I can't wait, as I love the beach and need a vacation. My son turned 11 yesterday. Where does the time go? Jemma, glad to hear you are feeling a bit better. It does help to not work. Now that it is warm out have you all tried swimming? It seems like a terrific vestibular exercise. Stacy, welcome to the site. I have to say that your symptoms sound like classic labs. Labs DOES last for months and sometimes longer! We are all proof of that. I had labs for over 10 months. It was awful. I take it you are in the states too? I can tell because you got in to the doctors right away. You have done exactly what I would have told you to do. Get to VRT asap and keep working hard. You will have ups and downs but will recover. Keep the faith everyone!! Melissa |
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Hi Stacey, Thanks for posting, your therapist sounds amazing and knows what she is talking about. Having researched this loads myself, everything you say is correct. Whereabouts are you located? You are so lucky to have this kind of help this early on, it makes such a difference to the individual. I thought I was dying for months, thought I had a brain tumour. Most of us think that way as we have no clue as to what is happening and the GPs always say it will only last a couople of weeks. That is the case for most people but MANY people go on for years with the same old stuff. Never as bad as the first time but nonetheless life changing. Glad you are feeling much better though and continue with the VRT, and I hope that for you it disappears soon! Brad I did hear that the tests they do for lymes in the UK are not conclusive and we send to the USA for a definite test. Glad you are feeling so much better now. Melissa, so happy for you xx Take care everyone Sandie xx |
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Melissa, Thank you! I am in Utah, this has been horrific for me. I am scared to death to go anywhere by myself, I feel like a two year old child who cries when their mother leaves the room, although the better I get the more confident I am in myself. I enjoyed reading your posts because it has helped me to cope. I am very happy for you and your recovery that gives me much hope! I definitely will keep up with VRT. Are you still taking zoloft? I am considering that just to take the edge off, my poor brain feels like it has been put through the ringer it needs a break and so does my body. When did you finally feel you had a grip on this? Brad, I am glad you found a cure for your lymes my stepmother text me she thought I could have had that. I never did check into it I never had a fever it was strange and my body was not tired it was in hyper mode. Glad you are doing better. Best Wishes everyone, Stacy |
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Hi Sandie, Thanks, I am from Utah, I do feel lucky that I was able to get help for this right away. I had a severe case. I am scared because our insurance will soon be government regulated and it just sounds like it takes you guys who have that already an awful long time to get to a GP let alone a specialist. I am sorry that you have had this for so long you would have to be tough as nails to endure this for 5 years. I am going to send good thoughts your way always, and pray you can have a full recovery you deserve that. I also wanted to mention anyone having trouble on the computer my therapist told me to ground my self. This is how, you put both feet on the ground touching the ground, you lean back and feel the back of your chair or you could lean forward and put both arms on the desk this will help you to ground yourself so your eyes are not doing all of the balancing work. This does help. Also any one having a hard time in big stores like walmart. You need a cart this will help to ground you, feel your feet be aware of your feet this will help to train your mind to balance with the feet instead of the eyes over time you won't be so overwhelmed because you have trained your brain to balance with the feet instead of so much with the eyes. Also if you do get overwhelmed just leave and go back later if you need to. In the begining take it slow and don't look around just stay focused on one isle and do not look at everything on that isle it will train the brain to not balance with the eyes. Also when you feel dizzy do not close your eyes it will make it worse you put your feet apart and lean against a wall this will help to ground you. Take Care Everyone, Stacy |
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WOW! Great to hear from so many people. Welcome Stacy. So sorry you have been suffering this nightmare. I have had this for just over a year now. It peaks and troughs, the symptoms improve a little then come back with vengeance. I have slowly improved - I go about and do most things as normal day to day. Like last week though I had loads of relatives visiting and the stress brought back the old feelings again. Very swirly headed, for me nausea, upset stomach, blocked ears and ear-ache etc etc!! I have improved a lot quicker this time than when all this stated last year - so hopefully it wears itself out. Gary- so great to hear from you. Have thought about how you are doing many times. You sound like you have come a long way from a few months back when you sounded so down. You give me hope for when i get to 18 months of this thing. I have little hope of waking up one day to find myself 'normal'! As you have read, have had a bit of a bad relapse which was horrible because I had had a few reasonable weeks. As you say, it is hard to see day to day progress, but have to look back long term. So thrilled to hear you have gone back to studying. I'm sure you will do just great in September. My friend's daughter is deaf and has to rely on the assistance from her uni's disability officer. They are really supportive and I'm sure will be of you as well. Wish you every, and well deserved success. Do just keep us updated Gary. I need the hope! DC - sorry to hear you are not too great just at the moment - have you tried St. John' Wort. It is worth a try before any medication stuff. I took it a few years ago after my mum's death - it helped really well. Apparently, they prescribe this in Europe quite a lot as it has a good success rate and better than chemical stuff. Brad - sounds like you are forever improving. Really pleased to hear someone has flown and not suffered. That is my nightmare. We have just had relatives from Canada and New York - both of whom have invited us over next year. Bit scared of the reaction of flying. Sandie - congratulations on your son doing so well. Amazing results! Are you having a good spell at the moment? I am loads better than I was but would just like to see some totally symptom free days. Have to say, that all this entertaining of relatives this last week whilst lovely has taken its toll. Major R &R next week for me LOL!!! Melissa - such wonderful news to hear you are normal again! Yippeee!! Haven't forgotten if we come to NY next year will be looking you up! Have fun at the beach. Claire - lovely pics of your special day. What a lovely family. Can I ask what your new VRT exercises are? I have got a new appointment with Prof. Luxon's VRT therapist at Queens Square in London next week. I am hoping she will give me new things to do. I, like Sandie has said, was given the usual Cawthorn Cooksey stuff which I am sure I have quite got used to but need someone to tell me what other things to do. Stacy, like you my balance has been compensated by my vision. Jemma - is your good phase still continuing? Lovely to hear from you all. If you can - keep us updated - as I said before, so need the hope I will feel free of this one day. Love & hugs, Gloria xx |
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Hi everyone, A busy forum at the moment with lots of mixed stories!!! I have got a cold!! but good news is although I am slightly dizzier than I was I'm not as bad as I was a few months ago when I got a cold. Still recovering from my birthday weekend thanks Gloria I am lucky to have a lovely family, dont know what I would have done without my husbands support through all this 'crap' sorry not very lady like bit its the only way to describe it. All I can say to all of you on here is that we have to be positive that it will go even if its going on forever we musnt let it beat us. My anxiety has improved by almost 100% once I realised that nothing really bad was actually going to happen to me I managed to control the anxiety attacks that crippled me sometimes. The VRT is going well, i think, am doing 6 exercises a day as well as walking, cycling & gym. Have never been so fit!! The exercises are 1. stand on a sofa cushion (i use a couple of pillows) close your eyes & stand still for up to 2 mins repeat 2x 2. place a busy sheet of wrapping paper on the wall use a playing card hold arm out at 12" in front of your eyes, then follow the card up & down 15-20 times with the paper in the background 3. Stand feet wide apart, find three targets on the wall in front ceiling in front & floor level. move your head up & down stopping at each target then repeat moving head without stopping 10-15x 4. Stand feet width apart use an object (ball) place on floor infront band to pick up then return to upright keep your eyes onthe ball rpt 10x 5. use 2 objects on the floor 1-2 metres apart walk at a normal pace arond them in a figure 8 whilst looking straight ahead 2x for 2 mins each 6. sit on middle of bed close your eyes lay down flat on back then roll whole body to left then back & repeat to the right do this 5 times & speed up when less dizzy. Phew I'm dizzy now. Hope these help if you havent tried VRT yet of course they are tailored to each person but I am sure they will work for everyone. Love to you all Jemma how are you? Claire |
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Claire - thanks so much for posting those exercises. They sound really good. Whilst similar in idea, they are very different in how to do them. Will try those as I think the new challenges will be good to test my balance further. I am sure the brain gets used to doing the same old thing day after day. Have a good week-end. Love, Gloria x |
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Hi Gloria, Thanks for your welcome. I am also sorry to hear that you have had this for so long. I never knew that something like this existed, even when they told me I had it, I had no clue what I was in for. I thought I was losing my mind, so I tried to act normal, my family wanted to go and watch shrek the fourth in 3d and I did. I remember thinking to myself, okay, if I pass out who will carry me to the car, if I freak out that would be embarrassing, so the whole time it took everything I had inside me to hide those feelings, I was so sick the whole time, I had a garbage bag in my purse just in case I threw up. When I went to my VRT therapist and told her the story she said she was surprised that I didn't run out screaming. She Also said, never ever watch 3D movies they are terrible for your vision and can cause vision and balance problems and they expect there services to pick up business from them, who knew! I can also share some of my exercises with you, it sounds like we have both overcompensated with the eyes. This was my first session. 1. Standing, put your feet slightly apart look at the wall ahead and count to 20 2. Standing, put your feet together look at the wall straight ahead and count to 20. 3. Standing, with feet together put right foot slightly up by your big left toe joint look at the wall straight ahead and count to 20. 4. Standing, with feet together put right foot slightly further ahead by big left toe second joint look at the wall straight ahead and count to 20. 5. Standing, with feet together put right foot directly in front of the left toe so your right heel is touching the tip of your left big toe, both feet touching the ground. look straight ahead at wall count to 20. Repeat all of these exercises above with your eyes closed and count to 20, that is the real challenge. 6. Standing pick up one leg look straight at the wall and count to 20. Then close your eyes and count to 20. 7. Standing, put one foot in front of the other so the heel of one foot is touching the tip toe of the other, look straight ahead, then turn your head to the right, back to center, left back to center. repeat 5 times. Keep feet in the same position and look up back to center, down back to center. repeat 5 times. With the above exercises, she told me to really focus on my feet and feel my feet, that will help you balance better and train your brain to use those feet instead of the eyes so much. In a hallway 1. Start walking down the hall and turn your head to the right,center,left,center, same as you did above, repeat until you reach the end of the hall. 2. Start walking, look up to the ceiling, look ahead center, down to the ground, back to center repeat until you reach the end of the hall. 3. walk backwards about 5 steps stop and forward 5 steps. stop. repeat 5 times 4. Walk backwards turn head to the right, then center, then left, back to center, until you reach the end of the hall. 5. Walk backwards look up at ceiling, back to center, look down at floor, back to center, until you reach the end of the hall. 6. Walk 4 steps eyes open then 4 steps eyes closed until you reach the end of the hall turn and repeat 2-6 times. 7 Walk heel to toe down the hall, go slow with this that is the key do it until you reach the end of the hall. 8. Walk stop stand on one leg, resume, stop stand on one leg do it until you reach the end of the hall. 9. Slow March, pick up one leg then count to three and then pick up the other leg count to three as though you are slowly marching down your hall. That was my first session I did this for 4 weeks. I am on my second session now and if you would like I will post that later. If I didn't explain them well enough let me know. Claire- I am glad your anxiety has gone that stuff is ,well, Hell! Happy belated Birthday, it sounds as though you had a great day! Today has been good for me so I can't complain one bit, I will take it. Take Care Everyone, Stacy |
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Hi Stacy Wow must have taken you ages to type all that out!!! Sounds like you got in early on the VRT I think this is the best thing for sufferers of this horrible condition. I have had it officially for 6 months now but startred to feel 'wierd' at Christmas with lots of symptoms I couldnt put my finger on at the time but now think it was the start of all this. Doctor told me it was anxiety & put me on Amitryptiline which made all my anxiety much worse & was hard to get off of. Now not taking anything only natural remedies & exercise. Make the most of the good days & hopefully gradually the good days will become frequent & you have to remember that when you have another bad day (or several) it willl get better again & its not going to get worse, i think once I had worked this out (took a while) thats when the anxiety got better. I was told al the samr things as you about the anxiety being pasrt of it. I have also had all the visual problems & driving/supermarkets all making it worse. I now cant go shopping without a trolley (english for cart) & have to have something to hold onto. My Birthday was like a massive turning point for me I felyt likeit is going to be a new beginning beacuse as they say 'Life begins at 40' Nice to 'meet' you on here it has been my salvation & dont know what I would have done without all the suport from lovely, understanding 'dizzy' people Claire |
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Hi Stacy, Bless you for taking the time to write all those exercises out. This has been so useful. I have so many new types of exercises to do - if that doesn't do the trick I don't know what will! So pleased you are having a better day - hope it continues. It is concerning about the new 3D films/DVDs and now of course TVs - my hubby thinks that would be good to get. I don't think so!!! Many thanks again - I'll let you know how I get on. Hugs, Gloria xx |
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Gloria just to say hope those work for you, I feel like they may be starting to help me already. You are right about the brain getting used to things & then more challenges make you dizzy. Another thing she said was try to walk around on uneven ground, my garden is perfect for this & as you walk, look around you up down side to side take in the surroundings you may look a little silly but it does help the brain to compensate more. Also apologies for my typing errors in the last post trying to type as I speak. So much to say isnt there? Have a lovely weekend Gloria Claire |
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Hi evereyone Stacy thanks for posting all your exercises. It sounds as though your VRT therapist really knows what they are talking about. I haven't tried watching any 3D stuff but I can imagine it wouldn't be good. I am pretty sensitive to any motion stuff anyway even before this struck. Gloria and Claire thanks for asking about me. I haven't felt brilliant these last few days. Quite swirly and headachy. As we all know it seems to be a few good days or even weeks then a few bad ones. You are right Claire it takes a while to even realise this because for the first year I always just assumed I was going worse full stop which terrified me, now I understand it is up and down all the way. Melissa so glad you are totally over it all now and Gary good luck with college. I really hope it goes well. Anyway I hope everyone has a reasonable week and let's us for a bit of sunshine, it seems summer has disappeared. take care xxx |
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Hi Stacey Thanks for your kind words. Think I am stuck with this forever now though! Your tips that you give are all things I have used myself over the years and they really do help. Back then, my therapist told me just to touch something with my finger if I was feeling dizzy or off balance and this gives a sense of stability too. Also, if you are walking and feeling off balance, to walk faster and this definitely works! Trouble is everyone always thinks I am in so much of a hurry! Gloria, I have been a bit off this week and feeling a bit dizzy. My ears are really full and terribly itchy! But overall, I have been a lot better! I do have completely sympton free days which at the moment outnumber the bad days, so that can't be a bad thing! Gloria DO NOT get one of those 3d tvs - they do come with a health warning. If you view the Samsung website you will see it there - keep well clear! Jemma - it is normal with this stuff to feel better and then feel worse. I went for years with this rollercoaster effect, even having different symptoms at different times! It is a nightmare but hang onto the fact that even if you never recover 100%, you will reach a point where it will be so much easier to cope with. Take care everyone Sandie x |
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Hi everyone, Well, Sandie how right are you! Thought I had a relapse the other week - wrong - that was a blip - yesterday was a relapse!! Didn't feel too good yesterday, but OK, went out with hubby to watch cricket in the afternoon. Cooked dinner and didn't feel too good, then by bedtime - wham! Everything spinny. A thing I never had before was feeling more unstable in the dark. Upset stomach, couldn't stop going to the loo (sorry!), so sick and really bad ear pain and fullness. We were supposed to visit friends on the coast today. I've already cancelled twice - I really feel I have let them down. So not alone Jemma - although I hope you are not as bad. Still, I suppose the bench mark is that although I feel complete rubbish, last year I had to stay in bed. At least I have got up and washed and dressed and writing this post. Don't worry Sandie - there will be NO 3D television in this house!! Claire/Stacey hope you are improving. Jemma - I am sure yours is a little blip. Keep strong. Girl power and all that!! Lots of love, Gloria xx |
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Hello everyone, Gloria feel so bad for you I really hope this 'relapse' just turns into a 'blip' think you've had this long enough now!!! You havent let your friends down you are not well & I am sure they must understand even though I know that it is hard to explain this to any other 'normal' person. Sending you a virtual hug as I am sure you could do with one! Sandie how long have you had this condition? sounds like a very long time. I have had a rotten couple of days, serves me right for bragging how well I felt! Just a cold but has set off the dizziness although not as bad as in the past so trying to stay positive, also have a bad lower back with a slight trapped nerve so had some pins & needles going on in my feet & a really annoying muscle twitch in my left leg which I am not sure is related to labs as have had it a lot especially when I am really off also sets off the shaky leg feeling. Also T.O.M next week so have the usual pre build up!!!! Anyway apart from that I am confident will have a better week next week. Taking the girls & friends to the forest in a little while so will practice my walking & looking around on uneven ground exercises. Get better soon Gloria & love to everyone else Claire x |
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Hi Gloria Sorry to hear that you are feeling so bad again. It's a flaming nightmare isn't it? I have shed many tears of frustration over the years believe me. I've also had the 'unstable in the dark' feeling. As I said you get different symptoms at different times (I did anyway). That one lasted quite a while for me but I'm ok in the dark now. Oh, did I tell you I broke my toe three weeks ago? It is still so painful and I haven't been able to do my long walks. I'm off on holiday on Saturday to Scotland and we do loads of walks in the countryside there but not this year! This is another thing I blame on the Labs, I have broken my toes three times since I had this because I keep walking into things. I am so much clumsier than I was. This time it was the bed leg, the last two times it was door frames. This time I have broken the one next to my little toe and it is taking so much longer to heal. It's like a little fat sausage stuck on my foot and my whole foot is still blue. I don't know what it is but since all this stuff started I just can't seem to manage to get through a door in one piece! I'm always stotting my shoulder as well. My friend who has this thing is always doing it too. Claire, it is five and a half years for me now. I have had to give up my job because of it and do feel better as a consequence of that but I have never been at 100% in all that time. At the moment I have more good days than bad but it is still there to smack me in the face when it fancies. I feel quite bad around period time and also think that it is my allergies (which I never had before) which are keeping it going as the ears, nose and throat are connected. Claire, although I have never suffered from twitchy or shakey legs myself, I do hear it mentioned quite often. Take care Sandie xx |
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Hi Claire, Thank you for your 'hug' - so need those don't we when having a few rough days. Sorry you have slipped down that 'ladder' a bit. Whilst I felt so horrible yesterday, and today it gave me the migraine from hell, I am up and shopping etc etc as you have to! I certainly wasn't like that a year ago. So glacial pace but progress none the less!! You mention about your lower back problems - don't know but I have never had so many muscle problems - neck, back, lower back, leg shoulder - in fact everywhere!! -twitches et al. I am sure it could all be related because of the simple fact that eyes, balance, and muscles all normally work in tandem - ours clearly don't. So maybe a connection? Anyway sending hugs to you and hope you climb back up that ladder and enjoy your trip with your girls. Any plans for a holiday away? I think you mentioned Central Parcs? We're looking at a week in Cornwall at the end of September. Next year may think about flying abroad somewhere, but not confident about that one yet. Love and hugs, Gloria xx |
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Sandie you are so right about walking fast. I do that too, it seems to mask the off balance, swaying feeling that becomes more apparent when you are still. I think that is also why I feel better in a moving car. I know you have had this ages but at least you give us hope that it does improve and we will learn to live with it. I still really hope you (and all of us) are symptom free one day! Gloria and Claire, sounds like we are all having a blip. I am not too bad but not brilliant either, just the usual off balance, tired etc. Claire my muscles do funny things they never used to do and like Gloria said I am sure it is all related to this. Today my neck hurts and my right eye is twitching. I was thinking about a holiday but I can't face flying and all the hassle that goes with it. Maybe next year, we will see...wishful thinking? Anyway take care everyone and hope we all feel a bit better in the next few days. xx |
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Hi Everyone, Claire, thanks for your welcome and insight. I was just wondering what natural remedies you have tried for your anxiety. I loved your statement about turning 40, I will have much to look forward to. Thanks for your encouragement it does help. I feel better with a shopping cart or trolley ( I love that). I only wished they had those in the mall, it looks like I will have to purchaes an oversized stoller for my 11 yr. old baby so I will have something to hold on to. I am sorry about your back, I hope you can get that feeling better soon. Have a great day with your girls, that sounds like a lot of fun. Gloria, How are you? you are welcome for the exercises I hope they are useful. I am sorry to read about your set back but can see that you are doing better even with the splitting headache. I am sorry you feel bad for your friends, they should feel bad for you and come to your house instead. You do a lot of things you should be proud of yourself. My therapist was suprised at all of the things that I had been doing and trust me I did not feel well doing them, so you are very tough for doing what you do. You have some great advice and are right about this thing coming and going. Jemma, you are welcome for the exercises, I will post my next session soon. I think I read a ways back that your tests came back normal. I had the tests done twice the first time it showed the blood not flowing correctly to my left ear and pointed to silent migraines. I went in two weeks later and had the same testing done and it showed everything was normal. If I had waited two weeks later I would have had a normal reading so just because there wasn't proof doesn't mean you didn't have it. They just didn't pick up on it. I hope you get better soon these are miserable things to experiecne. Nice to meet you, take care. Sandie, I am sorry you are not well, I know you have had this for so long and need your advice. I have anxiety with this and it is the strangest thing. My therapist told me this is normal I believe her but when you are going through it well it is hard. I looked at the 3d warning on the samsung website that is amazing, I just never knew it could cause those things. I hope you feel well soon. I am doing just okay, I was feeling great for 3 days straight in a row but now am not doing well. Our neighbor has a huge log in his backyard and everyday he sets it on fire. I am allergic to the smoke so you guessed it stuffy head, ears,nose, red eyes, tight chest and dizzy. Everybody needs a break and we all need to get better. Hange in there everyone, it will soon pass and hopefully never return! StacyXX |
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Ive got another theory about my condition if someone more knowledgeable could assist. I'm beginning to think its possible my labs attack caused BPPV and that is causing my constant 24/7 rocking and swaying. On the first day of illness the room didn't spin till i got out of bed and stood upright , and then when i lay down at the doctors in the afternoon when i was getting a blood test, i would like my doctor to perform one of the crystal repositioning exercises i.e Epley Maneuver Is their any risk in doing this movement? perhaps it could improve my symptoms even if i don't have BPPV, if it cures it and i had BPPV all along, ill no doubt write an extremely nasty letter to all the GP's / ENTs that f***ed me over throughout this ordeal. |
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Sandie! Broken toe - you poor thing. Don't know about you, but sometimes I feel so jinxed. Apart from the labs thing going on am STILL having my nose cauterised (see - got it right!!LOL). There is a large blood vessel in the left nostril that won't heal. I think it is connected because my left ear is the affected side. So keep getting nosebleeds. Chopped the top off my little finger the other week cutting stems off flowers. What next eh?! Know what you mean about feeling clumsy. I bump into things because I misjudge where I am in relation to things. Sandie I really do hope you have a good break despite your injury. Whereabouts in Scotland? You know the Queen is cruising around the Isles - maybe try and bump into her to hitch a ride!!! Thinking of you and have a lovely time (dizzy free). Stacy - good to hear from you. Sorry you are not feeling great. This thing certainly trys your patience. Why does your neighbour set fire to the log everyday? Is it because it is so big and he is trying to burn it down or what? We have a neighbour who has regular BBQs and uses the most foul smelling lighter fuel to set it alight. Really makes me feel sick. So have some sympathy. You mention about silent migraines - do you suffer from headaches and has labs made you have more headaches than normal. It has with me, and like Jemma, I get the horrible tight neck and head muscles. Weird. Anyway, love to you all. Keep on in there strong and positive. As Melissa used to say on here - keep the faith! Hugs, Gloria xx |
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Yes Stacey, the anxiety is definitely part of Labs. I had it too. It was in the early days with this when I first fell ill. I was told it is part of Labs because the nerves that controls your anxiety levels are very close to the inner ear. It makes sense to me. Don't worry about it too much because as you start to feel better the anxiety will lessen. Indeed, after that first initial horrific time with Labs I have never suffered again with anxiety, just a slight feeling now and again but it never comes to anything. I was even sent to a counsellor (against my wishes as I know it was illness related) by my GP. I went just to prove that she was wrong and I was not suffering anxiety that would respond to this type of counselling. The counsellor dismissed me after 15 minutes saying that I should have never been sent and she could see that it was because of my inner ear problems. You might guess that I have no faith in GPs! As you mention the silent migraine connection have you researched MAV? There was a website set up by a guy I used to talk to for suffers of this. I will try and find the link if you want? Jeez I could write a book about all this stuff - lol! Hey Gloria, one things for certain - there's nothing wrong with your memory - lol! Now are you sure it's cauterised! I'm off to Aviemore which is our usual base for all the kids' activities. Just the youngest at home now but the two oldest will be joining us for four days mid way! Jeez I'm getting old! Weather forecast is miserable for my hols - well it is Scotland I suppose! Take care Sandie xx |
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Hi Gloria, How are you doing? I hope your nose cauterization works (Gloria needs a break) leave Gloria alone. My neighbor, is trying to burn down that log and so he sets it on fire a little at a time everyday, just long enough to smoke everyone out but not long enough to really get it burned down. I have had headaches off and on for a long time nothing bad though, I always have had a stiff neck, during my labs event I felt like I couldn't walk and had horrible, horrible, tight neck,head and shoulder muscles. I had sensitivity to light and sound and when anybody would talk to me I felt like throwing up. The audiologist told me that those are symptoms of silent migraines, they do want to start me on a migraine medicine but I hate taking medicine. I know you mentioned that you tried some and ended up tossing it. My vision is also affected my eyes will get sore and when I look at something, the computer screen for example, for a split second, the whole screen will shift very fast back and forth or sometimes I just can't quite focus. So, definately, labs made it worse, or even sparked it. I have to share a story with you, my relatives mother had migraines for years and they were very debilitating for her. Her doctor told her there is a possibility she could have a hole in her heart and that the debri from the blood would cause the migraines. So he did a bubble test on her and sure enough she had a hole. They did a simple surgery on her, outpatient surgergy, it cured her migraines! Her daughter started to have migraines she is in her tweenties, same scenario,she went to a cardiologist he laughed her out of his office told her she was fine, the mother insisted she get a second opinion. She got a second opinion the doctor did the bubble test to check for the hole, yes, she had a hole, had surgery to correct it and now is migraine free. nice to hear from you Gloria:) Stacy Xx |
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Hi everyone, Stacy - thank you for your kind thoughts. I, too have read about the hole in the heart stuff with regards migraines. Something that may be worth pursuing, especially the longer this all goes on. Your head, neck and shoulder symptoms plus the eye sensitivity reflects mine, although I have had no real problem with the computer. I'm taking a herbal supplement that the consultant recommended to try if I couldn't get on with the migraine meds (which I couldn't). You do have to take it daily for at least 3 months to see if it has any impact (I'm now at 2 and some difference I have to say). You must get the right quality product otherwise you could just take a sweet (candy). It is called Butterbur Petasin (Petasin being the active ingredient). The make I take is the one they did all the controlled trials on and it is Petadolex. The other thing to try is the water/fat soluble Co-enzyme Q10. It must be water/fat soluble because Co Q10 is very difficult to enter the bloodstream and you need to take very high dosage if you take the ordinary powder capsule. Again, very good reports on it's effect on migraines. You need to take the 2 separately to see which works the best. However, you may get on just fine with the meds the doctor gives you - it's just the side effects I hate. Nice to read your post Stacy and hope you are feeling brighter. Sandie - have a great holiday - maybe forget the bikini eh LOL!!! Jemma/Claire - thoughts are still with you. Hope you are OK. My next set of visitors are arriving tonight. Not so tiring as they are close family and we know each other well so don't have to put on a show! My god-daughter is coming (her wedding gets more imminent in October). So wedding talk this week-end about outfits etc! My hubby is just going to love that one. I expect he will say he has to go and see to all the household chores that have been waiting for him for ages and he MUST get on and do them!! Hmmm!! Certainly hope next week sees a better week for us all. I feel I've slid right down again. Will I ever get to the top?! Love & hugs, Gloria xx |
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Hi Everyone, Oops spoke too soon!!! Having a major 'blip' think its a combo of pmt/cold/weather. major dizziness & fuzzy head/ears yesterday the girls had 2 friends to sleepover so had to be happy mummy, not easy. Didnt want to cancel as i am determined to not let this affect my life but very hard. Having a quiet day at home today & already getting that horrible fuzzy heavy feeling. I think I am coming out in sympathy with you Gloria!! Hope Jemma is ok havent heard from her on here in a while hope thats a good thing! Also love to Shirley thought of you this week when I saw your facebook update & really hope you are not also having to deal with all this Labs/BPPV rubbish as well!! Anyway have a night out with friends planned for tomorrow so hope I can summon up some energy or enthusiasm to enjoy myself. Feeling pretty fed up as I really thought this was well on its way out. Have a camping trip in 2 weeks then a trip to my Cousin in Tring followed by Centre Parcs at the end of the hols so I had better be feeling OK for all of that. Also thinking about Portugal next May but so worried this is still going to be hanging around (must stay positive) |
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Hi everyone Claire thanks for asking after me. I posted the other day but it may have been delayed getting on, not sure. Sorry you're not great and hope you find the energy to do the things you have planned. I am up and down really. Had a terrible headache yesterday but not as bad today. Just taking each day as it comes. Planning to visit my sister next week. Not that she lives too far from me but she moved house at xmas and I haven't even visited her there yet. That's what labs does to you, makes you a social recluse!! Gloria I don't know how you do it with all these visitors. I couldn't do all that even before I got this. I guess I am a bit of a hermit especially nowadays. I do make myself pop out to the shops etc but then I start spending money I don't have when I get tempted to buy things. I echo what gloria and sandie said about banging into things. I am covered in bruises which I think is because I misjudge things and walk into things all the time since this started. Still doing the same vrt but dont now if its doing much anymore. We plod on I guess hoping it will go one day! Shirley, Stacy and other past posters, hope you are doing ok? Jemma xx
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Jemma You sound fed up :( I hope you make it to your sisters I know what you mean about being a recluse but once I force myself out I usually enjoy myself & find it takes my mind of all this 'crap' (sorry for that word). How long have you had this now, do you see any improvement from the beginning of it all? I really feel for you & make sure you go to see your sister 'a change is as good as a rest' Hi to Sandie & Stacy too hope you are doing ok Lotsa love & positive thoughts to everyone Claire |
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Hi Everyone! Sandie- Thank You for your reassurance about the anxiety I value your opinion! I am certain now that it will go away, I am just going to ignore it even further. Please do post the link for MAV, I think that may be hindering my progess and would love to know more about that. Gloria- You have a whole host of wisdom in your experience, THANK YOU for the butterbur and co-enzyme Q10 tip, that information is worth it's weight in gold! Gloria, I would love to come to your house for dinner that sounds like fun, you are always entertaining. Jemma- I hope you start to feel better, I know what you mean about not doing as much as you did, it is so hard. Do you have migraines along with your labs or was it VN. I just hope the best for you. Claire- I posted you earlier on, just wanted to say thanks again for the nice welcome to the sight. I hope you had fun with your daughters. Sorry your not feeling to well. I hope you feel better too, is your back doing better? S- my therapist thought I may have mdds because I too felt the rocking back and forth sensation or moving while your not after her full work up she clearly knew I did not, I do not have those sensations at all anymore. Also, if you feel that you have BPPV my therapist said she gets people who have all of the symptoms of that but they test for it and they do not have rocks but sometimes they have a sinus infection that produce the same symptoms of BPPV infections and after treating it with antibiotics it will go away. Just a suggestion. Everyone Stay the course, nothing lasts forever! (Easy to say when your not going through it!) Stacy XX |
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Hi Jemma/Claire, Claire -this thing is really the pits - or other words that cannot be used on here!! I so feel for you. I thought I was on the up, but even though I certainly haven't felt my best and like you say you push yourself because you want to be as normal as possible, I am coping. I don't want to just cope though. It would be nice to feel I can be busy and enjoy everything. Really enjoy your night out. Now I think, well, I know I will feel c**p, so might as well make the most of it. Jemma - I am so exhausted and whilst it has been great having everyone here, as I've just said, I haven't enjoyed it as much as I would have liked because of having to deal with all the horrible effects this brings about when you overdo it. Also am doing the VRT but am half-hearted about it. They cancelled my appointment with Prof. Luxon's VRT therapist last week as she was sick. So don't know how long I will have to wait for a new appointment. I just feel I'm going around in circles. Feeling better one minute then down the next, up again then back down again. I want to be up and up and up and it goes away!! AAAAARRRRRGGGGHHHH!!!!! Like you also say - have no real enthusiasm to think about future occasions as you have no idea how you will be. Stacy - hope you are having a few good days. You have been lovely and posted your VRT exercises - do you think you could post your latest ones? Maybe something on there that's different. Claire - more e-hugs on the way! And to Jemma and everyone having 'blips'! Love, Gloria xx |
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Hi Gloria, Sorry to hear about your VRT appointment. Here is the second session for my VRT. I hope it will be helpful. do these in a hallway 1.Walk down the hall turn your head side to side do not stop in the middle and do it slowly so you will probably move side to side about three or four times. do that on all of the rest of these exercises. 2. Walk down the hall look up and then down do not stop in the middle 3. walk shake your head yes, up and down in little motion as if you are saying yes with your head. 4. walk shake your head no back and forth in little motion as if you are saying no with your head. 5. narrow walk, put one foot directly in front of the other almost heel to toe position only you are not touching your feet together, they are far apart like you are walking. repeat all of the head motions in order as above. 6. Backward walk, repeat all of the head motions as above only you are walking backwards doing them. 7. Heel toe walk, do these slowly and repeat all of the head motions as above only you are walking heel to toe make sure you are touching the heel and toe. Okay the next exercises you are fully grounded. Put your back to the wall touching the wall with your back, spread your feet apart touch the wall with your arms and palms of your hand as well, so your whole body is touching and leaning back into the wall. Once in that position then do all of the exercises listed below. 1. have someone move there fingers really fast in front of your eyes. Have them open there hands and move the fingers around quickly. 2. get a checked board picnic cloth or paper and have someone move that in front of you really fast, back and forth up and down. 3. get a checked board piece of paper and put numbers in the white part of the checks. Put that piece of paper on the wall in front of you and have someone call out the number and look for the number until you find it. 4. In a dark room get a flashlight have someone flash the light in front of you on a wall and follow the light. remember do all of those while you are in the grounded position on the wall. last one ground yourself on the couch or chair you can recline just make sure your back is touching the back of the chair and play a video game for about 5 or 10 minutes, xbox, wii, nintendo, or even cellphone game. I hope you are doing good Gloria, I hate how this thing comes and goes also. I am dizzy today I was feeling pretty darn good but today, oh brother, today is a different story. take care everyone, I am off to do my VRT I think I will do it twice today maybe even three times just to teach it a lesson. Stacy xx
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I've had this thing for 2 and a half years. I'm wondering how many people still have the same 'tension headache' they had from the very first day of their symptoms. I have had the same headache every day for 2.5 years. I did a TON of different types of therapies, and not much hit it. I'm wondering how many people have tension on the roof of their mouth, behind their eyes, around their head, around their jaw, and back of their head since day 1. I'm starting to believe my problem is 100% headache. I'm getting off all the medications I believe are only make the headache worse. I feel like with all the therapies I've done, something should've improved. One of the medications on I'm on, I feel, is holding back my improvement completely. I am going to beat this thing. I am 22, and my life is horrible with the constant tension. Gloria, I feel like I can relate with you the most, so I'd like to get in touch with you. Sincerely, The man who will beat this |
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Hi all, Thanks so much Stacy for taking time to post those exercises and sorry to hear you are also having a bad off day. I have to admit - and this is where I know I need to improve - is when I feel a bit brighter, I tend to not do the VRT exercises as much in the day. Maybe once. Yet, when I get a bad patch, I do the exercises more thinking it will make it all go away. Answer - to ensure I do them regularly EVERY day! Are you good at doing them? Welcome to this site 'the man who will beat this'! I so relate to what you are saying. Since june 26th 2009, I have had the same tight band, tension headache you describe. Have you been diagnosed as having labyrinthitis and are you a headache sufferer anyway? I remember at the beginning when I also experienced the most odd, zapping pains in my head, like electrical impulses, I ended up going to A & E ( your ER?) as it was so scary. They said everything I said indicated it was a tension headache and that labs didn't last as long as I said I had it. Sorry, even doctors do not understand the complications of this thing. What meds are you now on? I don't take anything. I have regular physio on my back and neck and head. Tried acupuncture but that didn't work for me. I am also trying to get into doing some more vigorous aerobic type exercise which I must admit to not being good at. If only because I've been quite busy with visitors lately. I also have to try and be positive that this will get better one day. Nothing can last forever or be as bad as at the beginning. It will take time. Where are you based? You are so young to have all this rubbish - but being young means your body will definately mend itself much quicker. Have the faith. It will come. This site is everyone's god-send. If you feel you are able to write how you feel - it is good therapy. We all totally understand on here. Claire - hope you had a good night out. Thought of you. Went down to the coast to Portsmouth - an hours drive for us so not too bad. Lovely weather, but couldn't cope with the crowds too much. Put on a brave face as we all do. Take care all - speak soon. Love & hugs, Gloria xx |
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Gloria, I have been diagnosed with Labyrinthitis, although none of the tests I've had prove inner ear damage. It all started when I was going through extreme stress, leaving the country for 4 months, and by the time I stepped foot overseas, I had no idea where I was/couldn't tell directions/felt like I was floating. This has literally ruined my life. I have migraines in general, as well as anxiety and depression, and this multiplies it by 10. All of my hopes and dreams have been crushed, put way out of reach, because it's like I have no brain anymore. My cognitive abilities are all a fog. The first instances where I noticed this coming on, were when I was asleep, and all of a sudden I would wake up to these tense shooting pains going to the front of my head. It was these incredibly tense pains that I could feel tensing up my head and face. I would just randomly wake up in the middle of the night to these, as well as feeling imbalance/tingling in my feet while I was sleeping, and by the time I woke up, the ground felt like it was being lifted and dropped, as well as me floating. By 3 PM everyday I was pretty much done for the day. Also, I'm in California now. Let me know if you can associate with any of this. Have a good day all. Man who will beat this |
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Hi all, I've been on vacation and just got back. Stacy, yes the Zoloft works to take the edge of the anxiety that the Labs gave me. I am still on it as it also takes away any other anxiety! LOL As for when I got a grip on it, I would say when it started to disappear. It took me from May of 2009 until I would say about the beginning of May 2010. I live in NJ and in October I started VRT. That is what really helped me. Now the only time I get slightly off is the day I get my period. I feel lightheaded now. Once I get my period, the feeling goes away. Another drug that really helped with the symptoms was Xanax. .25mgs just slows your vestibular system down a little. It helped me cope with the awful feelings that labs left me with. You will get better, but it is a huge battle! Keep the faith! Gloria, Jemma, Sandie, Claire, how are you all? I miss you guys. I haven't posted much lately and it is so hard to go back and read everyone's posts. Oh and Brad! Everyone you will heal and you will get better!! Melissa |
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Melissa, Thanks so much for your reply you give me hope! I am happy for your recovery, I too had the anxiety and panic, but now am left with anxiety. Your information is so helpful to me, look at you, you are on vacations and enjoying life again. There is life after labs. Yay!!!!! Gloria, You are welcome for the exercises. I know that they aren't much different than the first but for me they do help. My therapist told me to do these faithfully everyday and I will get better but she said it does take time to see improvements, If you don't do them everyday then you will start to go backwards. She also said once a day is plenty and not to overdo it. Also, do not get too dizzy while doing them if you do you are doing too much. I like your new picture I am assuming that is your husband. You look great together and happy. The man who can beat this, yes you will! just hang in there you will beat this. Sandie, Claire, Jemma I hope you are well. WE WILL GET BETTER!!!(I still have much hope for you sandie) Stacy xx |
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Hi all, Melissa - so lovely to hear from you and that you continue to do well. I think for me this will gradually fade rather than up and go. But hugely better than previously - it is just so slow. Hope you had a great vacation with your family - the pics look cool! Man who will beat this - I'm going to call you California Guy! Just to say all my tests and scans have proved negative, but then so many peoples' do. The first few months for me were similar to as you describe. The head pains, head pressure, eye pressure, headaches (not migraines) pretty much daily. The tingling I had in my hands and arms and walking was as if on marshmallow. Weird vision and brain turned to mush. Couldn't remember a thing - mid-sentence would forget what I was to say. The tiredness and exhaustion were paramount. For me too I have intense sweating, stomach upsets and huge nausea. The anxiety is a very common side of labs - even for those who have never suffered with it before - like me. I was on Amitriptyline for a while (Elavil?) Many people on here have and have had exactly as you describe. A guy called Gary from Ireland - he has suffered a lot with his cognitive ability, Jemma from severe tiredness and headaches. We are all similar. However, not many associate the head tightness and pressure. So for me it is quite refreshing to know I am not alone in that. I have been to see numerous doctors and consultants. All relate my lack of speedy recovery with my migraines. Whilst many of the symptoms have eased and I get relapses after being very stressed, but my head tells me I am not normal. I do Vestibular Therapy exercises. Have you been given these to do? Also, do you have dizziness/imbalance? The acceptance from me now is that I have this - it will fade as time goes on - most people do get over it although it may take a few years. Have you been to see an ENT consultant or VRT therapist. The exercises you have to do everyday, 2/3 times a day. They get boring and you sometimes wonder if they are doing any good at all. The point is to keep strong and know this will all pass. However, like Melissa who posted before this - maybe getting the right meds may help. DON'T GIVE UP! Keep in there with us all California Guy! California sounds a great place to be. Also, keep active - if you do gym stuff or as all of our therapists have told us - just get out and walk briskly for an hour or so every day. Stacy/Claire - hope your blips are blipped-out! When you get a relapse - doesn't it seem forever to get back up to where you were before? Onwards and upwards. Hugs, Gloria xx
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Hello Everyone, Welcome to the site California Guy!! Sorry you are suffering too its a horrible condition. Mine started in January with first signs of dizziness/tightness then in February got a virus which kicked it all off big time!! Full on vertigo/headache/tightness/pressure/brain fog you get the picture. Thought I had a brain tumour doctors didnt take me seriously after 5 visits of being fobbed off with anti- biotics & Amitriptyline an out of hours Doctor diagnosed me with BPPV or Labs & got referrd to ENT had an MRI scan (no brain tumour) then went on to have Caloric/eng tests found 18% damage in the right side even though its my left that 'doesnt feel right' So thats me, still the same doing VRT 2x a day exercising regularly still suffering from blips & occasional good days/weeks. Really hope it just fades away one day very soon. Gloria Thanks I had a nice evening on Saturday, not feeling my best at the moment but like you say you go out knowing you wont feel good & just make the most of it. Need the sunshine back!! Going camping in North Norfolk next Friday so would like at least for it not to rain. Melissa lovely to hear from you. You have now become a success story we need to have on here. I am always really bad around my period too (sorry boys) Its wierd how it affects it so bad have thought about going to the doctors 7 mentioning it to see if maybe some water retention tablets might help? Not too confident about going to the docs anymore though, since all this started hve lost my faith a little!! Anyway love to everyone else on here hope you are all coping okay Claire xx |
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Hi all Gloria I totally echo everything you say. Feel as though I am at the same stage as you. Still not right, head still not normal but feel better than I was with hope that it may go eventually but definitely on a fading basis and not overnight. California guy, you will beat this and I admire your determination. I think many people on here myself included have experienced some of the symptoms you have described to varying degrees. You sound as though you have some horribly neurological symptoms going on but this can be the way with a vestibular disorder. For some it is worse than others. I started with horrendous anxiety. It has subsided now but I still get a racing heart feeling and slight breathlessness at times caused I am sure by the physical effects of the balance disorder and mixed messages to my brain. Any kind of stress, worry, fatigue, other illness, tiredness etc makes the symptoms a lot worse. I just feel I have to take things really easy and quite slow and then I can cope. If I push myself even a bit I start to feel worse. Visited my sister yesterday. She is having a baby due early December. I didn't feel too bad at her house considering. I managed to keep talking etc for 1 and a half which is good for me! I find it helps to focus on other things like when she showed me round her house and we went on her laptop. Just sitting focusing on someone and talking makes me feel off balance and weird but then again I can do too much physical activity. At least I didn't feel too bad which gives me hope. Melissa like Claire said, you are our success story and our hope this will go for us all. Just might take a bit longer for some of us. Claire I too don't bother with doctors anymore. I went about 10 times in the beginning and they were hopeless. I thought for a while I would spend the rest of my life going to them begging for help/answers with this. I really don't want to see them again! Hope you are ok Stacy. Take care everyone xx |
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How lovely to hear from you Jemma - or 'auntie' Jemma! So glad you had a good time at your sisters and didn't feel too bad. Bet you feel it was a good accomplishment? Claire - with you on the sunshine front! I'm sure it made me feel better. Well, just been doing the ironing and listening to my ipod. Although heard it loads before, but if you get the chance to listen to this song - it is SO appropriate (well, the chorus anyway) and you sing along and it does empower you a bit. It is Gabriella Cilimi's hit 'On a mission'! The lyrics to the chorus: I am a woman on a mission, Nothing can stop me, I'm stronger than ever, I wanna see this through, I am a woman on a mission, whatever it takes, I will do what I gotta do..... For the guys change woman to man - works just as well. I'll drive everyone nuts singing this from now on LOL!!! Loads of love, Gloria xx |
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Hey All, sorry I've not written for what seems ages but I have been reading and keeping up with everyone. Stacey and Claire thanks for posting the VRT exercises, must have taken ages to list and type all that but much appreciated and I have been doing some of them. Well for me - I don't like to post this incase I put a jinx on it .. but I've been really good. I've joined a gym and now do an hour in the gym and an hour swimming. Started off being quite dizzy in the gym but now I think my brain is getting quite used to it. What does surprise me is swimming, I wasn't sure how my balance would cope as you are just floating. I started off doing a stupid kind of swim as didn't want to get my ears wet, must have looked great - ha ha but now swim normally. Has anybody else noticed that they are better in the water. Claire I know you go to the gym, how have you been finding it. I'm not sure if this has helped me but I certainly feel better and hopefully will start to get my old energy back. I hate this fatigue and I know we all suffer from it. I have kept up with everybody, Stacey a lot of your symptoms are similar to how mine were. You are in the early stages and seem to be doing really great, much beter than I was at that stage. Here in the UK it takes absolutely ages to get seen by an ENT doc and our GPs are absolutely useless, which is why most of us from the UK takes ages to go through the stages. I still havent had any VRT on the NHS but have had some done privately and they certainly moved me forward. Claire thanks for asking after me, yes I did have a bad week with the labs that week, probably brought on by all the crying I did, but I think it's made me stronger and I certainly have gained a determination to beat this thing. I want to have a normal life and I'm going to have one (determined face and a growl lol) Gloria - that song is brilliant and so apt, I've put it on my facebook. Hugs to you as I know you haven't been feeling too brilliant. I love your new photo by the way :) Jemma - woo hoo to you for having a great time at your sisters - it's times like that that keep us all going. I think we should all sing Gloria's song over and over - it certainly is catchy lol. So lets all say WE WILL BEAT THIS THING, WE ARE WOMEN ON A MISSION, AND WE WILL DO WHATEVER IT TAKES. Love to all Shirley xx |
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Hi all Shirley thanks for posting that song on Facebook it is a very appropriate song for all of us!!! I have been going to the Gym regularly 3 x a week if i can although in the hols not so easy so have been out running (or fast walking) instead. It has definately helped me alot, some days i dont feel like going might wake up dizzy but make myself go & always feel better for it. One things for sure this labs have given me a lot more determination & discipline with all the VRT & Exercise so that cant be a bad thing I definately feel like I am ' on a mission '. Fingers crossed for you Shirley wont say anymore than that as with the jinx thing I know that feeling. Gloria great song Thanks!! Hope you are seeing a little sigh of improvement :) Jemma, yay you made it to your sisters well done. Lets hope by the time you become an Auntie all this stuff is a distant memory!! Anyway off to hit the streets of Norwich now on a 'uniform' mission. Doing my VRT first Bye all Claire xx |
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Hi Everyone, for some reason my posts don't seem to be getting through but I am doing well. I haven't been dizzy for about 4 days and feel quite good, the only complaint is nightmares that I am falling down stairs and sweating in the night, my poor brain is still trying to cope. I really believe my VRT has helped a lot I do them everyday sometimes twice a day (even though my therapist said not to). Has anyone else experienced this nightmare thing and sweating sometimes I feel as though I am falling off my pillow but of course I am not, I will also ask my therapist why this is happening. Gloria(Woman On A Mission) I youtubed that song and love it. I will think of you now everyday when I sing that in my mind. You look great in your new picture. Yes is does seem to take a while when you have a set back, I hate those, you think you have kicked this thing and wham, there it is. You seem to be doing well:) Jemma Thanks for asking about me. I am so glad that you got to go to your sisters house. I hope that you can kick this thing soon. It is so hard to have to deal with this and try to live a nomral life. I don't blame you for not trusting any more doctors they all seem to have a different explanation and can't really give a cure anyway. You will get better. I just hope your recovery speeds up for you. Take Care:) Shirley It is nice to hear from you. I am so happy for you. You have come a long way. You sound really good. If our symptoms are the same I am hopefull that I will continue to improve. I am sorry it takes you all from the UK so long to get into a dr. I feel I was lucky to get in as soon as I did my VRT therapist said if I would have gotten in even sooner obviously I would be getting better quicker. A lot of dr's don't even now about VRT My son's school teacher told be about the hearing and balance center so I signed my self up. I just thought I had a virus and it would go away after 2 to 3 weeks that is what the dr's said. I had no idea I would have to do therapy and that it would take months to recover. Take Care:) Claire I like your new picture. You sound like you are doing good and able to get around well. Keep up the good work and it will pay off! Take Care:) Every one Sounds good! Sandie, man who will beat this, brad and Gary. Hope you are all ok. Stacy xx |
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Claire - hope your 'uniform mission' went ok, I remember when I had to do that with my kids and it was a nightmare then when I was dizzy free, goodness knows how it will be with the dizzies. Stacy - I used to get terrible nightmares, my brain would just not stop going even when asleeping, I would often wake up in a cold sweat and try to think what the nightmares meant. I even used to have spinning dreams - obviously getting vertigo whilst sleeping. I don't have them now but I think that's because I have less anxiety now. I'm sure yours will pass once you get over the anxiety stage. I forgot to tell you in my last post that I went to see a psychic surgeon last week and I am not sure whether it was seeing him that has made me feel stronger or whether its the extra activity that I am doing - it was a very interesting experience anyhow. Take care everyone Shirley xx |
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Hi Stacy I too had that wierd falling off pillow feeling didnt know what it was for ages think it was a mix of vertigo spinning & anxiety but woke up sweating with heart pounding several times. Like Shirley mine was at the beginning of all this & now my anxiety has improved so have alot of other symptoms (except the dizziness:() Shirley I managed the uniform shop pretty well was quite pleased with how it went didnt feel too bad, not sure I could have done it last week when I was much dizzier! Went to the Gym today had a good hour session no one else in there was lovely! also go swimming every Friday with the family as we rent a private pool just up the road so no one else there except us good job as i also hate getting my ears under water so have to keep my head bobbing up! What is a psychic surgeon? Would love to hear a little about it. Anyway not bad day today generally better than last week. Need some sunshine for next weekend-camping! Hope everyone is well Claire x |
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Hi all, Will try again - everything has just disappeared!! Great to hear from you all. Shirley - lovely to hear how you are doing. So glad you are coming on so well. Do you think your Epley manouvers have worked? Do you still get any dizziness? You are putting me to shame with all your activity. I must get back to the gym myself. I do power walking and some cycling, but that has made the muscles in my shoulders and back so sore. For me, when i get dizzy it affects all the muscles in my head neck and shoulders making them all tight and I'm sure this doesn't help when over using them like in cycling. My excuse anyway!! Psychic surgeon? What is that Shirley? Is it like spiritual healing? My take is do whatever it takes to get free of this thing. Stacy - am thrilled you are having better days. So with you on the sweating and nightmare front. Have never had so much sweats in all my life. I wake up drenched. Although it has improved over time, I know when I am going through a bad patch, because it all starts up again. I don't have nightmares but very vivid dreams of which I can always recall. Something I have never done before. Claire - glad your week is better than last. You have so much resolve and I'm sure it is because you have to get on for the sake of your family. I had a busy week-end again - lovely, but yesterday evening felt not so good again. The head muscle tightness and pain kicked in again big time with the old swirly head etc. Also, I think if I do too much head-turning etc with VRT that can effect my muscles. So maybe have to do more gentler exercises for a few days. I feel I'm damned if I do and damned if I don't! We always seem to get payback after doing anything enjoyable and remotely 'normal'! The weather this week-end is on the up and will get much warmer. So good for your camping. Is it just the week-end or are you staying longer? Hope you have fun. I used to love camping but prefer my home comforts a bit too much these days! Sandie - don't know if you are still on holiday in Scotland? Hope you are having a fun time and feel good. Jemma - hope your head is behaving! Taking a leaf out of Shirley and Claire's book and will go and play a bit of tennis. Kill or cure! Love, Gloria xx |
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Hi Everyone, I am so thankful for your input. It has helped me so much. This is such a strange illness, I will be so glad when it is gone for good. I am doing better. I called my VRT therapist and explained to her the falling off my pillow sensation she said that could be bppv so she wanted me to come in that day, I could not make it. She told me to sit on my bed with my feet danling off of the side turn my head to the left look at the wall and fall over on my right shoulder, keeping your head still but now you will be looking at the ceiling, she said to repeat that on the other side and try to do it several times a day if possible. When you fall to the side and are looking at the ceiling start at one spot until the dizziness goes away. I did this 2 days in a row and I have not had the dizziness or falling off of my pillow sensation since. Shirley- I am certain that the anxiety has something to do with it too. I googled psychic surgeon, that is interesting. I am glad it helped you. Do you have only one appointment or do you need to keep returning? Thanks for sharing your information with me it really does help. Claire- Thanks claire, I think that the spinning in my sleep creates the anxiety and then it just spirals downward from there, until you wake up or for me, right before I reach the bottom of the stairs LOL! I am glad there is an explanantion for all of this craziness. Thanks again for your info at least I know that for this illness that is normal. Gloria- Haha! I agree I have never sweated so much in my life either. That is a nice thing that you don't have nightmares, I usually always dream vividly so maybe that is why mine are nightmares. I read somewhere that tennis is really good rehabilitation, let us know if that is true. My neck muscles are really tight also, everytime I do my therapy it just makes me realise how stiff my neck is. Have you tried therapuetic message? I just don't want to make things worse. Thanks for sharing your info too, It does make me feel better. Take Care Everyone! Jemma and Sandie are you okay? Stacy xx Claire |
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Hi all Stacy thanks for asking about me. I am the same as usual really, not bad, but not brilliant either. Just plodding along but grateful I am not having to work. I can relate to the vivid dreams and falling feeling in your sleep. Something which happens quite regularly for me and never did before labs. It does come and go a bit but happens quite often that I am almost asleep then wake with a start feeling like i am falling. For me I don't think it is BPPV but I did think it might be at one stage but I have heard so many people have this with vestibular problems. Someone who has had VN for a few years told me that they experienced spinning vertigo but it wasn't BPPV, their therapist said it was just when they had overdone it and their brain was overloaded. I still get a racing heart quite a bit, especially in the evening but I try my best to ignore it and not think about it if i can. Gloria my neck has been quite tight and just like you if I overdo it at all, which includes sitting for a period of time talking to someone, then i can feel it tightening and getting more painful. It usually eases up if I rest for a bit. Take care everyone xx |
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Hi all, Jemma - great to hear from you. I'm not too brilliant again at the moment. I think it is the overcast, cloudy weather we are having at the moment. Seems to make my head more swirly and heavy feeling. Carrying on as much as I can though. I'm also with you on the racing heart thing. I've just started to notice that. It scares me that I might actually get something quite dreadful one day and think it is all down to labs! The person you mentioned that has VN - have they still got it? How long does this go on for - I've got quite down again lately. I'm so fed up having to deal with all this every single day - you must feel the same. My neck too is horrible and tight. It did ease off for a bit but that has now come back. Stacy - I have had all sorts of therapy including acupuncture - but it helps temporarily and then all comes back. Until the brain sorts itself out and works in tandem with all our other bits and pieces again, I feel that will always happen. Going to have a bit of a rest now - see if that helps calm everything down! Take care, Love Gloria xx |
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Gloria - so sorry your not feeling too good at the moment - I know the feeling of thinking how long is this going to go on for, we must hold on to the thought that this is not a lifetime illness and we will get back to normal one day, hopefully for all of us that wont be too far off. You asked about the eply manouvre, well I had such terrible spinning after having it done that it took me about 6 weeks to get over it. On the advice of my physio I am now doing the brandt Daroff exercises, the ones that Stacey was told to do and so far so good. Not had so much of the spinning but have stopped doing them since going to the gym but really need to get back to doing them and the other VRT as I feel I am going backwards a bit. Stacey the psychic surgeon's name is Stephen Turoff and apparently there are only 2 in the UK, one is Wales and one in Chelmsford, which is not far from where I live. I don't know if you have them in America. He is also a healer. To be honest, even though I am clairvoyant and of course I believe in the afterlife, etc. I was still sceptical as you never know if these people are frauds and just want to take your money. But I have to say it was a quite an experience. I met him before I went in and spoke to him for about 20 minutes before going into the room to have my "surgery". He had pictures all over the walls of him with beams of light coming from him when he performs his "surgery". He definately believes in what he is saying. My son, who took me, hates anything like that, but even he was drawn in. Anyhow for those who wish to know what he did: I was told by his receptionist to lay on the couch. I told him I couldn't as I had vertigo and he said just to sit on it, which I did. Stephen came into the room and asked me what my problem was and I told him it was labs. He stood behind me and put his hands over my ears and said that I had suffered a shock, which actually took me by surprise as I do believe this is what has brought on this illness. I felt heat from his hands, that the healing coming through, and he kept them there for a couple of minutes then put his hands on my shoulders for a couple of minutes. He said he didn't have to perform "surgery" as it was not needed but that he had opened the energies up so that I could now be healed. I left the room feeling quite dizzy and then my son drove me home. The strange thing is that later in the middle of the night, I was woken with a terrible itchy feeling right in my ear, you know the type of one you get that you just cant itch. The next morning I actually felt quite good dizzy wise and have felt better since. Now is this him or is it the increased exercise I am now doing, who knows but it was an good experience and I will definately go again. Claire - hope your doing ok. Keep the faith everyone - ask your spiritual guides for help - we must all believe that this will pass one day and become a distant memory. Love to all Shirley x |
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Hi Shirley, Thank you for your comforting words. I wish I knew how to find my spiritual guide - I think mine have all but given up on me. Your experience with the psychic surgeon sounds amazing. My mum's younger brother took an interest in that sort of thing - and went to meetings and thought that he had healing powers. I was quite young at the time, so didn't really know what was what. I have an open mind, but most of my family thought it was rubbish. I always think other people's life interpretations are interesting and am sure they have some basis for their belief. If you are gaining strength and healing from this Shirley - go for it. Well, felt so horrible last night. With me it is like I have been struck down with a virus or bug. As well as the dizzy, tight, full head, I get shaky, anxious, sweaty and nauseous. It's just awful. I'm sure it is because I do too much and my brain clearly cannot take it. As Jemma said, it becomes overloaded. Wednesday, I was charging around the West End of London with my god-daughter looking for bits and pieces for her wedding in October. Oxford Street is a nightmare. No wonder I feel off! I do my VRT, but don't think it is the cure all to be honest. I think it helps, but it is just a time factor. Who knows how long that is going to be. Claire - thinking of you for your camping trip. Hope you'll be OK and the weather will be kind. Shirley thanks again - perhaps you could have a word with those little spirits and point them in my direction! Take care, Love & Hugs, Gloria xx |
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Got no brain, forgot to say what I came on here to say. I went back to see the ENT doc, a different one again. He said he didn't feel that I had labs and that he felt my dizziness could be to do with something else. He went through how your balance system works and because I have problems visually and feel off balance and light headed and have neck problems he said it didn't sound like labs and it could be to do with some other part of the body which is causing my brain not to compensate. He gave me a small list of exercises, said they don't do VRT at the hospital and signed me off. Yey to not going back but now I am alone with this thing and still no answers. I know through reading up on labs that it is a vestibular problem. These docs just don't get it. Oh and by the way he said he wasn't a vestibular expert !!!!!! |
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Gloria - we posted at the same time so missed your last post. Just wanted to say - You WILL get better, now say that to yourself over and over again and BELIEVE it. An affirmation to say on waking and sleeping - repeat it several times: Every cell in my body vibrates with energy and health - my body heals quickly and easily. |
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Hi Shirley, Know how you feel. The VRT therapist I have been seeing on the NHS has virtually said the same. She thinks all my symptoms are anxiety related. Well, I have never had anxiety before all this came on and it wasn't anxiety that brought it on in the first place! I think because we are a few who do not recover in the text book style or time frame - then they don't know what to do or say. The doctors are the same. The neurologist guy signed me off last week with pretty much the same words. Other than you know where I am if you still need me!! The Royal Ear Nose and Throat hospital that I went to in June has been chaos. I wanted to see the doctor there again - was told the clinic is moving location and has been temporarily disbanded!! The referral for the VRT person there was made then cancelled because she was sick and I am yet to hear when I am to go again. I have telephoned several times - she now is on holiday!! Exasperation!! So Shirley - you are right we are left to get on with it and not really know what to do for the best! Personally, I think this will go under its own time frame. As someone I know who had this said it faded over time. I think unless you have BPPV - straight - then VRT helps but isn't the cure-all as I said the other day. I only thank god for this site and all of you on here who have become such friends so we can support each other through good and bad, knowing how we all REALLY do feel. I promise I will say your mantra. Thanks Shirley - big hug and kiss to you. Hope you and everyone has good, better week-end (wet for us in London area though)! It is our local fete and regatta today with fire-works this evening which we are going to with some friends. A wet and chilly one - not sure about all that looking up at the fireworks though! Speak soon, Love, Gloria xx |
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Hi Everyone, Jemma- Hi,Thanks for your post. I am sorry your not great but glad you aren't bad either. It's nice to know I am not the only one with the falling off the pillow sentation at night. I think your right about doing too much. I always think if a little is good then a lot is better. I am going to not do so much and see if that helps. Shirley- Wow,you are clairvoyant! Your whole experience was interesting I loved reading it. I thought it was interesting that he was able to open up your energies and that night you had itching in your ear. I wish I could have my energies opened up. Thanks Shirlely your post was great. Gloria- What happened? I am sorry you had a setback, you sound very upset. I feel so sorry for you. The money that I have spent trying to get some relief from this is ridiculous. It just seems that everyone does the same thing, we have a set back, go to the dr. to make sure there isn't something else wrong, spend a ton of money just to find out that there is nothing wrong or even if there is, there is no cure, time is our cure. Gloria you WILL get better! You do so well especially considering all of your set backs. Hang in there (you always do). Take Care, Stacy xx |
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hi everyone Gloria sorry you feel rotten, you sound fed up. I dont blame you, I am too. I just wish it would disappear for good! My neck is killing at the moment. Not sure why. I read that the SCM muscle can be affected which is the long muscle across the front of the neck and going up into the mastoid area behind the ears. Maybe that is responsible for a lot of the tightness in our necks and shoulders. How did the regatta go? Shirley I agree with Stacy that psychic healing thing is fascinating. I always wanted to have a reading done. I do believe in astrology signs because I find most people fit their characteristics really well. The healing thing sounds so interesting. Do let us know if you go there again. Anyway take care and hope everyone feels better next week xx |
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Hello all...I recently just found your blog page...and I was so grateful...I am in Atlanta, GA and back in May started experiencing some weird off balance issues. Prior to that I had a bout with vertigo almost three years ago, but recovered pretty quickly. However, I went to a ENT who said I had fluid in my ear which was causing the off-balance issues and wanted to put in tubes. I got a 2nd opinion and he said I did not have fluid and do not need tubes, but he could not tell me what was wrong. I have gone to every doctor, but was told everything is fine...of course they now say it's anxiety, but I never had a problem with anxiety before, just trying to find answers as to why I am off balance. I am now going to a balance center and I started VRT back in June and have had about 3 visits which has helped at times. I plan to see the doctor soon b/c my ears are still bothering me. Sometimes I feel somewhat okay and then there are days that I feel like my head is going to explode. I also suffer with migraines, but cannot take the meds prescribe and still function. Again, I was just happy to find your blog and see everyone remain so positive and supportive on here...that is what you need to beat this. I am also a very spiritual person and I truly believe that God heals...healing is a process. Take Care and healing for everyone:-) Nicole |
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Hi Nicole, Welcome to the site! Sorry you are not well. Being dizzy and off balance is awful. You mention you had fluid and do have migraines. My VRT therapist told me that you can experience dizziness from the migraines but I am not sure about the fluid, at one point I had fluid in my right ear but that is now gone. I know that can make you feel off balance. I never had anxiety before my labyrinhtitis eaither but apparently that just comes with inner ear problems. I think there was a lady on here named Anna her doctor prescribed her a diuretic for the fluid in her ear and it made all of the difference for her. Gloria has an alternative for migraine medicine she posted it to me a few posts back here is her quote "I'm taking a herbal supplement that the consultant recommended to try if I couldn't get on with the migraine meds (which I couldn't). You do have to take it daily for at least 3 months to see if it has any impact (I'm now at 2 and some difference I have to say). You must get the right quality product otherwise you could just take a sweet (candy). It is called Butterbur Petasin (Petasin being the active ingredient). The make I take is the one they did all the controlled trials on and it is Petadolex. The other thing to try is the water/fat soluble Co-enzyme Q10. It must be water/fat soluble because Co Q10 is very difficult to enter the bloodstream and you need to take very high dosage if you take the ordinary powder capsule. Again, very good reports on it's effect on migraines. You need to take the 2 separately to see which works the best. However, you may get on just fine with the meds the doctor gives you - it's just the side effects I hate" that was Gloria's post. Hang in there Nicole. You have the right attitude and yes I agree God does heal. You will beat this Stacy xx |
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Hi all, Welcome Nicola - your story resonates so well with practically all of us on here. Vestibular problems cause anxiety and not the other way around. Why don't doctors know that?!! I have had some stressful situations in my life, like most of us I guess, but have never experienced stress or anxiety before or dizziness or anything remotely like this as a result. It is just very bad luck that we pick up the labs virus and have to deal with all that goes with it. I, too am a migraine sufferer and like you, too, cannot take the special meds they have given me. So as well as all the dizzy stuff, I get horrible headaches and pains as well. How about you? Am so with you on the head feeling as if it is going to explode. It does scare you, but that is why it is great to vent how you are on this site, because there are those that know exactly what you are experiencing which is a comfort to know you are not going completely mad! Jemma - You are right about the SCM muscles. Every week I go to a physio who works to release the neck muscles. I have spent a fortune. It does help, but then like recently because of a bad relapse, not even that works. It will go when this thing goes I suppose. Have had a bad day again, but that is my own fault to some extent. Went to the regatta - went on the river in our friend's boat - watched great fireworks. We didn't get home until 2.30am - way too late for me. Woke this morning and felt dreadful. Really bad anxiety and edgy feeling too. Everyone there was having a few glasses of wine - i just had my fizzy grape juice. This morning I felt like the one that had drunk all the wine. So so unfair. I think the combination of being on a rocky boat on the river, looking up at the fireworks was just too much. I did feel a bit weird on the boat. So won't be trying that again in a hurry! Like you Jemma - on a real downer at the moment. Just don't know what to do next. What are you up to at home? Are progressing with your internet idea? I need to do something before I go completely stir crazy. But what? How can I commit to work or anything when each day you just don't know how good or bad you are going to feel. Stacy - Thank you so much for your concern. I dread to think of how much money I have spent over the last year on doctors, specialists, alternative therapies etc. As you say, that is what you do in pursuit of a cure! We have to keep strong and not let this beast get the better of us. Keeping the faith and praying for better days. Love & hugs to everyone. Gloria xx |
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Hello Everyone I'm back from camping (more of that later) Welcome Nicole, sorry you have had to search for some answers but you have come to a good place with people who have a heck of alot more knowledge of this condition than the so called specialists! Hope it helps you the way it has helped all of us, believe me before all of this I never imagined I would feel so connected to so many strangers (now friends) Gloria, I feel so bad for you dont really know what else to say as I know it wont make you better but just to say you must remember it is another blip & it will improve again. hugs to you xx Jemma, Hope you are on an even keel at the moment. Are you getting out & about a little more now? This thing affects the confidence so much you have to fight that side of it dont you. I def feel more confident than I did about doing things which was a huge & important step for me. i am the same as you with anxiety every now & then it starts to rear its ugly head & I purposefully have to ignore it to make it go away!! Stacy hope your ok & starting to improve :) Shirley Well I am back from 3 nights camping!!! had lots of fun & activities a few drinks a few walks even a big game of rounders on the beach (got 6!!) Everything okay considering not a lot of sleep esp last night as we almost got blown off the cliff!!! slept for 1 hour then spent the very early morning dismantling 3 tents in the gale force wind (not brilliant for labs sufferers)Not too bad today considering all those circumstances so lets see what the next few days bring!! Love to you all Claire xx |
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Hi Claire, Welcome back! Was it just windy or did you get rain as well? Nearly blown off the cliff - OMG!! Scary! Fantastic that you coped with all of what you did - and drank - probably being out in the fresh air and being active has helped. Although, I can never find any rhyme or reason why things are better some times and not others. Any more hols booked? Thank you for your concern too. Really had a bad week or so - especially with the old anxiety thing this time too. Just when I thought I was starting to feel better, but as I've said before - it is my own fault to some degree because I just carry on as if all is well and overdo things when I feel a bit brighter! Went for a 5 mile cycle ride today with hubby. We live fairly near Windsor and Eton. There is a huge rowing lake - owned by Eton school and is going to be used for the rowing events in 2012 Olympics. It is a beautiful spot - quite rural. You can enter the complex for walking, picnics, running or cycling as there is a path all around the lake and plenty of parkland. Today was quite sunny in London, so it was a lovely afternoon. The cycling has made me feel a bit better this evening. So hopefully am rising out of this blip. Fingers crossed. Stacy/Nicola/Jemma/Shirley - hope you are all fairing OK? Claire - hope you don't have any 'blips' now you've returned. Take care all, Love, Gloria x |
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Hello all...thank you all for responding and providing advice...I will be asking my PT regarding some of the supplements you named. I am just leary of taking any med (besides a vitamin) I am afraid of the side effects. I had a very bad experience with Clarinex D and some other meds they tried to give me. Anyway, I am trying to take it one day at a time...did I also mentioned that I went on a 7-day cruise during my off-balance time and now I am also experience Mal-de Debarquement according to my PT; so we are fighting two demons...I actually went to the gym today...did not stay long b/c I felt like I was going to fall over, but I plan to go again tomorrow...you all are right...this thing takes your confidence, but I plan to get mine back...I am single and live alone; so I don't have a choice. My job has been great with allowing me to telework some days...but believe it or not I miss going into the office. Thanks again...I really enjoy hearing about your positive steps toward regaining your lives back. Take Care, Nicole |
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Hi Everyone, With all of the testing I have been through I have been able to find just a few more things wrong with me. My MRI came back stating that I have Superiror Oblique Myokymia, which is spontaneous twitching of your eyeball, I guess it can eventually turn into the whole eyeball just going any witch way it wants or it can just have little twitches for the rest of it's life. I am curious if this is causing some of my eye symptoms or contributing to any of the dizziness. If anyone knows about this could you please comment, it is caused by the 4th cranial nerve being pinched. Other than that I am improving each day so I cannot complain. Claire- your trip sounded like a lot of fun and scary with all of the wind. Hope you are doing well. I am thankful you did not get blown off of the cliff. dismantling 3 tents in the wind, close by a cliff sounds like great VRT therapy, did you feel any better after doing that? Gloria- you do a lot, going on a boat,fireworks and the rocking back and forth no wonder you did not feel well. 5 mile bike rides! Isn't it worth it though, I get so tired of avoiding things. Nicole- whenever I would sit down I felt like I was rocking back and forth, when I would walk and stop it felt as though I was still walking, when I would bendover I felt like I was still going forwar. It was awfu, it one day just left and those feelings have not returned. Hang in there it will improve. Anyway, I hope the rest of you are fine. Hang in there, Stacy OO |
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Hi all Gosh I havent been having a good week. My neck is so stiff and painful again and I can't seem to get rid of it. It really is bugging me. My balance hasn't been great either. Just have to keep going and hope it passes as a blip but it is so annoying, I just want it to go. It is 16 months for me now!! Nicole sorry to hear you are suffering with this. You have found a great site though which if anything it makes you realise you aren't alone. Claire well done on the camping trip. I am not a camping girl, i like my make up, hair straighteners and hot baths too much but you must feel so pleased you did it and coped well. Gloria I am with you on the downer thing, been so fed up of it this last week or so. I think I see progress then it is snatched away again and i go backwards. I have, with much help from my partner, managed to set up the online shop. You can check it out at www.flamingoboutique.co.uk Stacy, Shirley hope you are ok? Take care Jemma xxx |
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well its 9 months and i wish i could be more positive but the 24/7 swaying feelings or motion whatever you want to call them i don't beleive they are getting better, im really struggling some days to live, the entire 9 months has been so depressing its almost surreal :( |
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Hi all, Jemma - what a brilliant site! I feel my Christmas shopping maybe coming your way. If you have been doing all that - you should feel very proud. Some really lovely things - right up my street! Whilst my neck has been a bit easier - for me it has been the swirly head and headaches - nightmare! Am now seeing an acupuncturist. I've got those tiny 'seed' as she called it in my ear lobe to help ease stress. Don't know if it is psychological - but did feel a bit better last night?! Anyway, saw my usual VRT therapist who declares she definately thinks it is more migraine related - even though I shared her logic, but said the consultant has said because it is a constant rather than intermittent, it is not solely MAV. Anyway, she depressed me further by saying that MAV has to have medication to improve and a patient of hers has had it for 5 years. She did quickly add - probably to make me feel better - that she did have periods of feeling 100% in between. Oh joy!! Would like to get to the 100% better periods first! Stacy - don't know about what your MRI showed, but whilst good - I do think some things show up that you wouldn't have been any the wiser about. What does your doctor say? How are you otherwise - you say that the dizzy motion has stopped? Nicole - know how you feel having to deal with 2 things going on. With me it is my migraines and the labs thing. Good for you to be so proactive and going to the gym. I think you are wise to carry on with your job. For some of us we were glad to give up, but if you are on your won you need to have something to take your mind off of it otherwise you do go stir crazy. I just don't feel I could commit myself to work again at the moment - 1 day better, 1 day awful. That said, i so need to have something to get my mind of of this. Thinking about doing an evening class or part time college course in September. Claire/Shirley and Sandie (good holiday?) - hope you are all on the up as they say. Jemma - we have to hang in there - surely this cannot go on at the intensity it has forever - can it?! Do you still get swirly or dizzy headed? Take care, Love, Gloria xx |
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Jemma, Your site is very nice and you have some great items on there. I had a stiff neck long before labs and I did do physical therapy, it did help but I did not see it through and when I stopped doing the exercises all the stiffness returned. I did ask my physical therapist if the stiff neck could really go away with physical therapy, she said yes,once you get the muscles all stretched out it would go away. I never completed it so I really don't know. I hope you get better soon, you should be proud of your site, you did a great job. Gloria - you are right, I did call my opthamologist and unless my eye is bothering me, double vision or pain, I should not worry about it but I do have funny things happen with my eye sight, although brief, it does seem to hinder my recovery. I am not sure if that is contributing to some of the off balance or the dizziness I have experienced (although that has really cleared up).My dizzy motion has stopped(for now). I don't get the rocking back and forth sensation or the still moving sensation when I am not. sometimes I do still feel as though I am falling off of my pillow not as much as it was. Every now and again I still feel a little off balance not bad though. I really have improved a lot. I hope you are feeling better Gloria. I know you cannot tolerate migraine medicine, what did your therapist ask you to do? Is the medicine the only way? Take Care Everyone, Stacy oo |
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Hi Gloria Glad you liked the site, I did chose all the items because I liked them myself. My partner did all the computer stuff though which was the hard work. It is just getting people to know about it really now. Just to say a big YES I do still feel swirly headed/dizzy all the time unless lying down. It is there to varying degrees all day every day and worse in busy social situations or anything challenging etc etc you know the score. I have maybe a few days or even a week or so where it can be less prominent and then it goes worse again but I have not come close to having one day where it isn't there or I am symptom free. That said, I don't think it is as severe as it was at the beginning and I do have a bit more confidence to do things than I did last year but it is still there all the time and I wish to god it would just go but I know I am in for a long haul. I am grateful for the things I can do and I am really glad that the anxiety and depression have improved hugely since last year however the balance thing and the neck pain is still there very much and I am praying one day it will go and I can have a normal head again! I hope you're right Gloria, surely this can't stick around forever... Onwards and upwards I guess xxxx |
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Hi Everyone Jemma- love your new venture well done have my eye on the heart ring I love a bit of costume jewellery & a girl can never have enough bags!!! Shame your not feeling brilliant 16 months is such a long time I desperately hope you see an end very soon. Gloria, sorry its so bad for you as well at the moment you have also suffered sor so long must be very hard to be positive, but you must!! Stacy & Nicole hows it going? Hope you are both doing okay. Stacy Mal de Debarquement I have heard of that before must make the usual dizziness horrendous. Nicole thanx for asking my camping trip was really good I was luckily having a good week & have been not too bad since I got back certainly didnt need ant VRT for a few days. Braved some more school uniform shopping today then a trip to see 'Marmaduke' at the cinema. Feeling a little dizzy now, to be expected but okay. This week will be my tester as its the week befor 'that week' & wether its hormones or fluid retention it always makes me feel very off for about 10days. I can almost gage my symptoms around my 'cycle' now which is odd but interesting. Anyway love to you all & have a great weekend Claire xx |
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Hi all, Jemma - you and I must have caught the same little monstrous bug!! Really wants to challenge us eh?!!! So know what you mean about not having experienced any symptom free days yet, but like you, do get better periods (hours I have to say only). Did think of us both last night when I started to watch X Factor again. I remember us 2 consoling each other last year about the only things we could do at the time was to settle down in front of the TV and watch X Factor, hoping this all would be a dream by this time this year!! HA! HA! HA! But as you say Jemma, whilst not pleasant, we are a lot more forward than then. Claire - glad you haven't back-tracked. Will be thinking of you in your neck of the woods tomorrow - horrendous rain apparently. Good job you are not camping this week-end! Really hope you are seeing the back of this thing at long last. S - just caught your last post on 20th August. Hang on in there. As you may have read in our posts - Jemma and I are at 14/16 months. Have you had any help from a VRT therapist? Whilst it isn't a cure, for some it is, it does help. Stacy just recently has posted a whole list of exercises - try to do them a couple of times a day, and to do gym/tennis type activity. You have to be consistent with them though. Also have you approached your doctor to try some anti-depressant meds. They do help. We are all in this together - keep positive. Stacy/Nicole/Shirley/Sandie - thinking of you all and sending big hugs. Love, Gloria xx |
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Hi Everyone, I am very excited, I did a lot of things this weekend, went to the movies, shopping, and dinner. I did not get a knot in my stomach, usually if I am out for too long I get pressure in my head get a little quesy, anxious and overstimulated. I did not get that while out at all. What does this mean? I felt like my old self, I forgot what that was like. Is this a good sign, please,please,please let this be the beggining of more days like this ahead. S- I can understand your frustration please do what Gloria said. Do the exercises I had posted and be consistent with them. I had those feelings you described but mine just one day left and I haven't had them since. If anything it will help you to compensate quicker. Try an anti-depressant it just may break the cycle of your rocking sensations. Jemma- I think we posted at the same time but your site is great. You should be very proud. I am sorry you have not been well. I hope you get feeling better soon:) Gloria- I hope you are feeling better soon too:) Claire- you sound good. I read a book about vestibular disorders and that fluctuation in hormones can make things worse. That fits right in with your dizziness worsening around your cycles. Shirley are you okay? Sandie are you still on vacation? Nicole I hope you are doing good:) Hang in there everyone! Stacy 00 |
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Hey all, Jemma - I just love love love your new website. I've already picked out some christmas prezzies so have saved your site on my favourites list. Sorry you are still not feeling the best. It's just so hard to keep thinking positive but we really must try to. I read somewhere that if we think positive then positive things will happen to us .. worth a go don't you think? Gloria - can't believe you went on a boat!!! Not sure if I am up for that yet but well done you for doing it and enjoying it. Hope you start to feel a bit better too. I know what you mean about not having a symptom free day - I have not had a sympton free day yet but I am getting longer and longer periods of time where I am symptom free. I think going to the gym has really helped and believe it or not when swimming I have no symptoms at all. Unbelievable !! Stacey - thanks for asking after me, yes I am ok thank you and glad to hear that you are getting on ok too. I wonder if a lot of our symptoms are to do with anxiety - keeping busy like you did at the weekend stops us from watching out for the symptoms. I have been noticing this quite a lot with myself lately. Claire - yay you with the camping trip, so glad you enjoyed it and are not experiencing any worsening symptoms. Your poor brain probably didn't know what was going on ha ha. I also have the same problem with that time of the month - more fatigue and light headed. The added joy of being a woman with labs ha ha. Nicole - I hope you are doing better. Take care everyone Kisses Shirley x |
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Hi all Well i predicted it well. So swirly headed almost as bad as at the start. I am so convinced now about 'the hormone effect' I have ordered myslef 2 books from amazon about dizzy/vestibular disorders I want to research it a bit more & visit my Doctor armed with some possible evidence. I now realise i have 2 good weeks followed bt 2 bad. It all makes sense around a 28 day cycle. Look out Doctors you have been warned!!! Maybe there is a magic tablet to stabilise my hormones or maybe I should try a more homeopathic route. I just need some answers!!!! Anyway rant over. Was so dizzy last night I actually couldnt sleep as lying down made it so much worse ended up taking 2 Nytol at 2am then struggled to wake up this morning. Now have that sort of hungover heavy head feeling :( Shirley nice to hear from you glad the gym could be working for you. As its the holidays I have gone from going 3 times a week to about 3 times in 6 weeks! At least when the children are back at school I can get into it again. I definitely think it has helped me immensely & highly recommend it to anyone else. Stacy/Nicole/Gloria/Jemma looks like everyone is having a pretty challenging time at the moment. Thinking of you all x Claire |
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Hi Shirley, Thanks for commenting, I agree I have a lot of anxiety from this. I think our symptoms sound a lot alike as well. I couldn't drive for the longest time. Ever since I came down with this it just seems as though I am hyper aware of everything. In the beggining I could hear my heart beating and my body was shaking I was very aware of my breathing, it was awful,now that has gone but I am still quite shaken up by all of it. I am improving so that is nice. Have you been back to your psychic surgeon? Jemma,Gloria, Claire,Nicole and Sandie I hope you are improving:) Stacy 00 |
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Hi all, Claire - I'm so sorry you have regressed, but there does seem a pattern with the hormonal thing. Although I am glad, that being a lady of a certain age, I am just over all that, but for me it has made my headaches/migraines worse. Having suffered with them all my life and as they were hormonal - I had thought that I would see the back of them. No such luck. And clearly for me, it is those headaches which are now the bain of all this. It clearly seems that I get so much more dizzy with my headaches, but the fact that labs for me has meant practically daily headaches anyway - is not good. Am so trying not to go back on the Amitriptyline - which did help a bit - because it made me put on so much weight. I don't need that before my god-daughter's wedding in 8 weeks, especially as I won't get in the outfit!! I was at the gym too this week plus an aerobics class. I pushed myself on the treadmill and made me feel quite unsteady when I got off. So whether for me I did too much again, but it has made me feel rotten the last couple of days. Claire, I would ask your doctor for a light diuretic. I had that which did help each month. Also, have you tried acupuncture. Am doing that at the moment. She did say things will get worse before they get better. So am trying to hold on in there. Are you still doing the VRT every day. I am seeing another therapist next week. Apparently, she knows about migraine related dizziness as well. I think I need a different set of exercises so as not to aggravate my headaches. But don't you just get so fed up having to second guess stuff all the time as to what may or may not cause the symptoms to be worse. As Jemma said recently, I, like us all, want it all to go away - am finding it difficult to summon up the daily patience. with all this. Professor Luxon - who is the oracle on all things vestibular and whose clinic I finally got to go to in June up in London - has retired. I now have to wait for a follow up appt not until November. I did ring to say I am desperate for something earlier - but again because it is NHS - no such chance. Also, have been referred to the new team. So will have to repeat all the information again!!! And after the last year cannot really afford any more private doctors. So will have to wait. Claire - big hugs ooo - let us know what your doc says when you get to go and hope this month's blip will be short lived. Compare with last month to see if there is any difference. Anyway, Stacy/Shirley - glad things are on a reasonably even keel for you both. Long may it continue. Love & Hugs, Gloria xxx |
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Hi everyone Thanks for all the positive feedback on my website. i am pleased with it, just need to find ways to market it so people know about it. I have been feeling pretty rotten generally these last couple of weeks. Had a few better moments but overall not great. Just like you Gloria I have been getting daily headaches and neck pain and nothing seems to make it go. It must be related to labs but it did not happen at the beginning for me. I think it is linked to the compensation phase. I dont know how to get rid of the head and neck pain but like you the headaches make my dizziness worse. Yesterday was really bad, today a bit better. I am surprised about Prof Luxon, I didn't realise she was at retirement stage. What a pain having to wait so long again!! The NHS therapist has referred me for a course of chronic fatigue group therapy sessions, for 1.5hours each starting on 8th september. Should be interesting. They mentioned relaxtation and acupuncture - does it hurt? Hope everyone manages to do something nice this bank holiday weekend... xxx |
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Hi folks: It's been a while since I've posted. All I can say is it is true...when you start feeling better you just "move on" with your life. I hope all of you are doing well with your battles. Keep the faith..you can beat this! As for me..I'm still in Lyme treatment. I just started my 15th. Overall I am MUCH IMPROVED! My anxiety, depression, sweating, GI issues and dizziness are GONE. I'm 95+% most days..some even 99%. THe few remaning symptoms that I have are most likely related to a tick-borne co-infection called Bartonella. My main symptoms now are more of a nuisance than anything else. Mild tinnitus. Mild ear stuffyness. Mild eye floaters. Mild calf muscle twitching. So..just wanted to pass along words of encourangement. YOU CAN AND WILL GET BETTER WITH PROPER TREATMENT. For me..that meant I had to keep pushing until I had true root cause. I had doctor after doctor tell me it was either stress, in my head, or viral labs. But they were WRONG! I do believe I did have labs...but lyme was at the root of my labs. Keep pushing for answers and I encourage everyone to get an Igenex western blot test (www.igenex.com they will send you a test kit), particularly anyone who has sweating, chills, GI issues, headaches, muscle pain, etc. Here is some info on Lyme, Bartonella and Babesia: Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol Bartonellosis symptoms *********************** Common symptoms of bartonellosis include: ___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion) ___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus" ___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature ___Headaches, especially frontal (often confused with sinus) or on top of head ___Eye symptoms including episodes of blurred vision, red eyes, dry eyes ___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis) ___Sore throats (recurring) ___Swollen glands, especially neck and under arms ___Anxiety and worry attacks; others perceive as "very anxious" ___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature ___Poor sleep (especially difficulty falling asleep); poor sleep quality ___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations) ___Muscle pains especially the calves; may be twitching and cramping also ___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis) ___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc. ___Tremors and/or muscle twitching ___Heart palpitations and strange chest pains ___Episodes of breathlessness ___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins ___Gastrointestinal symptoms, abdominal pain and acid reflux ___Shin bone pain and tenderness Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms. Babesiosis symptoms: **************************** As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis: ___Chills ___Fatigue and often excessive sleepiness ___High fever at onset of illness ___Night sweats that are often drenching and profuse ___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.) ___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud" ___Depression ___Episodes of breathlessness, "air hunger", and/or cough ___Decreased appetite and/or nausea ___Spleen and/or liver enlargement ___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate) ___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas) ___Joint pain (more common with Lyme and Bartonella) ___anxiety/panic (more common with Bartonella) ___Lymph gland swelling (more common with Bartonella and Lyme) |
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Claire - I'm wondering how I am going to be too with the dreaded monthlies - I'm late too so wondering if I am now starting to go through the change - I do feel very hormonal at the moment, didn't help last night when I got stuck in the changing room at the gym when the lock on the door broke - can only happen to me ha ha. To be honest it wasn't funny, my anxiety went through the roof and I could feel a panic attack coming and the old dizziness, swirly head came back. Just shows how anxiety and the dizzies go hand in hand. Luckily my daughter came looking for me and raised the alarm otherwise I would still be there. :( Stacy - Yes we do sound similar although you are so much further on than I was at your stage. I do still get swirly but there are moments when I feel normal but I am nearly 10 months into this. I am keeping my fingers crossed that by month 12 I will be over this. I feel I am almost there now. I have not had a second visit to the psychic surgeon but do wonder if it was him that has help me move forward with this. Who knows ?? Gloria - I also feel off balance when I get off the treadmill but my son says he feels just the same so it might not be just because we have this. I just go through the 3 minute cool down and then stand there for a couple more minutes just to get my balance adjusted. I have started going on the cross trainer as you need to use your balance on that but can't do too much as it just tires me out really quick. I find as long as I don't overdo it I am ok. Maybe try swimming - it's a good way of exercising and I am sure it is good VRT. Another thing I have discovered which is good VRT - going to a bootsale - uneven surface, looking right and left and if you have a 3 year old with you - lots of spinning round. Jemma - I suffered terribly from neck and headaches up until a couple of months ago and my physio said my headaches were related to my neck. She gave me some neck exercises to do, which I couldn't do as they made me too dizzy. However, since I have been swimming my neck has been so much better - I guess I am exercising it without knowing it. All in all I feel my symptoms are now passing - very slowly. I do seem to wake up the same now most mornings, its only when I feel really tired that I get off balance and my headaches seem to be (hopefully) a thing of the past. I still have trouble with the lying down thing so need to get on with the brandt daroff exercises. I am visiting my dad tomorrow in Nottingham and am staying with him over the bank holiday weekend. Just hoping the weather will be ok. Take care everyone. Hugs. Shirley xx |
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Hi all, Jemma - big hugs to you too - oxoxo -is there ever a stage when we can say - hurrah, no more symptoms! I hope you are right about the headaches being part of the compensation phase. I did think to myself, even feeling as rubbish, especially yesterday, that this is like the old migraines I used to have before all this. So I wonder if everything is fading out?! Would be too good to be true I feel. I have to say nothing I've tried has really got rid of anything. It seems to go around in circles. Try acupuncture - tiny little pin pricks, but for some it is like magic. So worth a go. Jemma - re your new web site. If you design a leaflet and email to me so I can print it out. It would give me something to do. I could then combine my exercise walk and do a leaflet drop around where I live. I have certainly told my friends, but am happy to do that if you feel that is what you would like to do. Where I live and surrounding areas is quite residential. Maybe worth a try - what do you think? Brad - my goodness! Is there nothing that those diseases don't attack? I'm pleased for you that you are much much improved. As you say your life moves on when you feel better. Good for you. Every best wish to you and your family - how is your new baby doing? Shirley - hopefully, 'the change' won't affect you so much. You sound like you are coming out of this. For some it is only a few months or a year, but for some of us it is an unknown quantity - alas. Onwards and upwards though - I can't call you swirly Shirley now! Have a lovely time in Nottingham. Got my cousin and god-daughter over again this week-end for more wedding discussions (8 weeks) OMG!! Just hope I am in a good phase by then! Claire - how are you today? More hugs xo. Lots of love, Gloria xx |
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Thanks for responding Gloria, was feeling pretty down that day, im working with a VRT physio doing exercises trying everything i can to get back to health, found a caring doctor and seeing one of the top guys in Australia DR.Halmagyi, world renowned specialist on Balance disorders etc in a few months. I really don't want to take anti depressants though because of all the side effects that come along with them, i will also feel down if i have to take them cause it means this illness has defeated me i refuse to let this thing destroy me. |
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Hi all, S - just know how desperate you feel. It is wonderful to hear when people are coming out of this thing or even know they have recovered in a relatively short space of time, but when it just seems to go around in circles and not really improve - it gets you doesn't it. For some of us it clearly is going to be a long haul. You are under what sounds like the best of people - this is very much a time based condition and requires the patience of 100 saints put together! I also understand about the anti-depressant thing. I'm with you on that, but the last couple of weeks have been such a challenge again - it is tempting. As I said before S - we're all here for each other. Come and rant and rave about how you are - you are with friends. Do you work S? Double pressure if you are in that situation. Although, now, I wish I could do something as I said before, I'm driving myself mad because I don't have anything to do., but because each day changes, cannot commit. In the lap of the gods as they say - maybe they may look down on us all favourably one day! Weather wet and gloomy here in the UK, makes me feel worse - send over some sunshine Australian sunshine S! Onwards and upwards - we will beat this thing. Hugs, Gloria x |
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Hi all, Oh dear, I have spiralled right down that snakes & ladders board!!!! Ever feel like you wish you were someone else, somewhere else. Dont think the weather is helping at the moment (with you on that one Gloria). So swirly headed for 4 days now really dreadful like at the start :( Not sleeping well as it is worse when i lay down & if i have too many pillows I get a stiff nick which then makes it all worse AAAAAAAAAAAAAAAARRRRRRRRRRGGGGGGGGHHHHHHHHH!!!!! S, Sorry you are suffering too I have had Amitriptyline (bad spelling) for anxiety & it made me worse but I can understand how it makes us take these things as it really is a constant struggle. I have had this for almost 8 months now trouble is no one asks if I am okay anymore as i look okay on the outside. Its not that I want sympathy just understanding. People think as you look ok then you must feel okay but they have no idea that inside you are swirling around!!!! Shirley have a lovely time with your dad hope you manage the journey ok. Jemma why dont you try sharing your site on Facebook then we can all 'like' it & then our friends will look on it then thier friends.....& so on. Gloria thanx for the advice on the hormone stuff have made an appt with the doc on Sept 13th (soonest I could get) & am going to ask him about the fluid retention I will try anyhting after this littl bad spell. Cant believe how I've gone down after seeing so much improvement. I am doing the VRT every day not always managing 2x. Back to see the therapists on 14th Sept. Not really sure if it helps after 6 weeks of doing it & actually feeling worse at the moment!! Looks like you too are really suffering at the moment maybe its a bad time of year for Labs?? Anyway sorry to be a negative post today but I know I dont have to put on my smiley face with all of you!! Claire |
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Hi Claire, We need a group hug don't we. Last night I woke up in the middle of the night feeling so swirly and sick - not had that before. Today feel really badly off. I know you say yours is hormone related but whilst I don't know much about these things, but do you think atmospheric pressure is the culprit here at the moment? It is just it has been so dull, wet and oppressive. I'm going to ask the VRT therapist on Wednesday (as long as she doesn't cancel again!) about different exercises. This does make you feel so helpless because there doesn't seem to be anything or anyone that can give a definitive. Also know what you mean about looking OK. People are SO surprised when you say you are still feeling rubbish - 'but you look so well'. I WISH! Claire - as I keep saying to myself - I have felt better, if not perfect - so will aim for that AGAIN! Hold on in there. Love & big hugs, Gloria xx |
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Hi everyone I am new to this site but have been going through this misery since the end of April. I was at a clients working on my laptop when all of a sudden the whole room started to spin and i couldnt walk properly for around 20 minutes. I felt an extreme sense of panic and nausea but somehow managed to make the 45minute car journey home. For the next couple of weeks i just felt a bit woozy on and off and just put it down to the fact that I was stressed because I was waiting for exam results! A couple of weeks later I started with a constant rocking sensation in bed. It just felt like I was on a boat. I went to my GP in the morning and he diagnosed labs and perscribed prochlorperizine to be taken only when feeling extremely bad. Well I class that day as the start of this hell. Since that day I feel like I have gotton worse each month. Internal head spinning, rocking and floating sensations, extreme anxiety, difficulty using a computer, driving or going into stores. Not to mention the constant nauseous feeling which I think is one of the worst symptoms ever! I have been to see a neurologist that diagnosed BBPV and labs, then an ENT consultant who said the neurologist was incorrect and diagnosed VN. I recently had my follow up and the ENT now says he is not sure what it is and wants a second opinion from another neurologist!! (My MRI and blood work were clear btw) I am just getting so down about the situation. It is ruining my life. I feel like I only exist at the moment. 4 months down the line and still no solid diagnosis. I am sick of people telling me that at the age of 24 I should have recovered within 8-10 weeks. Is this correct? Some weeks I feel a little better, then I go back to square one! I had to defer my final set of exams in July because off this and I was certain that I would be ok to sit thyem in November but now I have had to defer them again. I can't work because my job involves lots of travelling which I find too difficult at the moment. Does anyone else struggle with driving or being a passenger? I have never suffered from motion sickness in my life, but now i feel really queasy on a journey. Does this sound like VN to you guys? Also if it was VN would I have actually experienced a lot of sickness with the vertigo? (Knocking on wood!) I have only experienced extreme nausea for the full 4 months. Maybe this is because i am someone who does everything in their power not to be sick lol! Any suggestions would be greatly appreciated. I just want my life back! Ash x |
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Well ill give everybody an update on my condition,i dont feel swirly dizzy anymore although my mind feels clear my concentration is quite bad / memory, i have a constant feeling of motion / swaying 24/7 still and sensitivity to fluorescent light (car lights hurt my eyes when im driving) no more ear popping or crackling in my affected ear, no more ear pain or tinnitus (haven't had those symptoms in 4 months. I might also add i feel like im walking on a swaying bridge, my balance is quite bad still at night although its improving, the movement sensation stops when im running / walking fast, in a train, car etc at least i get a break during those times albeit a very small one. I would consider myself 100% recovered if the swaying sensation stops because its causes me the most discomfort, i can deal with the poor balance at night, but this feeling frustrates me the most. |
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Cant believe I just spent ages typing & it all dissapeared!!!!!! Hello everyone Ash, Sorry you are suffering & had to search for some answers but I think you came to a good place, its been my salvation since April. Everyting you have said is all too familiar to me & all the others on here. No it doesnt go in 8 weeks we are all proof of that. We were all told the same i think the medical profession ought to look at some of these sights!! Mine started in January had all the tests like you & all clear told after caloric/eng tests that I had viral labs which knocked out my balance system & thats is the cause of months of turmoil. The anxiety goes hand in hand with the condition apparently when the brain senses the dizziness it sends the body into panic mode (fight or flight syndrome) this is why you get all the symptoms of anxiety which make everything else so hard to cope with. I am now doing VRT & not sure if its working?? 2 months ago I thought I was seeing some light but have had a bad month so who knows?? S, sorry you are still suffering I hope that things are on the turn for you> Gloria my blip is now more of a relapse :( felt so bad this last couple of weeks & seems to be getting worse again!! now so swirly dizzy jumping vision again. worse when i stop & sit down. i am trying so hard to carry on as normal but maybe trying too hard. I dont know what to do for the best anymore. CenterParcs this weeken & really need to feel more normal as lots of activities planned for the children. Jemma hope your okay :) Shirley love the pics of you & your Dad hope you had a good time & managed to stay dizzy free!! Keep up the gym I have lapsed lately because of the school hols & wonder if that might have added to my worsening symptoms?? Love to all Claire [Copy the text to your clipboard before submitting. Then you have a copy if it goes wrong — Rich] |
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Hi all, Well after a couple of really horrible weeks, the week-end was a bit better. Still no where near 100%, but grateful for any small amount of respite. Just get so exhausted trying to cope with social situations and be cheerful!! Claire - that was how I was a few weeks ago. I just thought this is like the beginning. In reality if I analysed it, it was better than in the beginning. I really couldn't get out of bed then. The mornings, as soon as I woke I was so nauseous and being sick - the mornings were a complete write-off. Now my mornings are still not the best, but am not sick even if I feel nauseous sometimes and get up and carry on with my day. Sometimes that is really hard. Progress is SO SO SLOW and the person who had this years ago that I spoke to was right. The symptoms peak and trough and GRADUALLY lessen over time. I found my symptoms were worse when I stopped and exhausted myself by just carrying on doing stuff without a break. My VRT therapist said not to do that and to take regular breaks to let your brain settle. I'm with you on VRT (I'm up in London to see the new VRT therapist today - will let you know). I want to ask why, when the ENT guy advocated VRT and that would be the answer to all my problems, that I'd be out of this within weeks rather than months if I didn't do it - hhhmmm!!!!! Not convinced, but you do it because you think if you don't we'll be cursed with this forever. Like me back in July - you've done a lot over the school hols - try, if you can to take some time out in the day to lie down and rest for 10mins or so. S- sounds like you are gradually coming out of it. As I've said to Claire - the same symptoms come and go but gradually lessen. Hopefully, until they've ALL gone. My eyes hurt with bright lights and I still have probs with my ears. My balance is better, but get more headaches and now feel more dizzy in evenings and at night which is a reverse of how it was. Ash - for this to happen to someone so young is awful, BUT, being young will help you recover much more quickly. You must try to keep as active as possible without over doing it. Am with you on the nausea - that has been with me all along in varying degrees. Some don't get the nausea. If you have read our posts, everyone has different symptoms, some the same and some on different severity. Everything you describe is normal for labs/VN. It is very difficult to distinguish between the 2 or I was told VN doesn't cause tinnitus, which I've had all along. Don't be scared by this, it will go, but you have to accept it takes a long time for some. That said, whilst I know I haven't felt 'normal' since I've had this - I have had led a pretty full and normal life over the last few months. You must accept and deal with the times you feel rough and embrace when you feel good. NOT EASY - we all know that. Get a good VRT therapist - which I think helps at the beginning and when you feel really swirly/off balance/dizzy. As for car journeys - I have always felt better (mostly) in a car (not in the back though). You may find this changes over time and you actually feel better in a car. I have no problem when I'm driving or as a front passenger. Do keep positive - post on here how you feel - as Claire said - this is our life line knowing exactly all the symptoms that are endured and can empathise. I'm not sure doctors do understand all the symptoms, just only the text book stuff. This I think is because it isn't like the common cold, not a huge number of people get it and their experiences are limited. Hold on in there. Shirley - hope you had a good week-end and you too Jemma. Claire - do feel for you - big hugs oxox. Let's hope this is an easier week. Love & hugs all around Gloria xx |
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welcome Ash, Are you from the united states? Your symptoms are a lot like mine. Get into a hearing and balance center. They have trained specialist in Vestibular rehabilitation therapy and it DOES work. Anxiety just comes with this, it is just from the mixed signals that are coming from the inner ear, as you do your therapy it will go away. Don't get discouraged you WILL get better. As for your driving, I was the same way. My husband would drive me to therapy and I would sit with a throw-up bag, driving made me so sick but now I can drive and go into stores without getting sick. Hang in there,Ash:) Claire- I hope you get better and your doctors can figure out what is going on. I can't believe you had a relapse! Maybe you are having silent migraines from hormone fluctuations. My therapist told me that happens a lot with women and it can cause dizziness and eye problems all sorts of problems and I am sure you already know. Get better Claire. Gloria- You have gone backwards too! what is happening here, that scares me. I am afraid for winter to come. Does winter affect you? I am glad you had a good weekend. Sorry you haven't felt well for a while. I hope your therapist can give you some good info today, something that can really help:) Gloria, you must get better for the wedding that is coming up! S- You never know, one day your rocking sensations just might spontaneously go away I have heard of that happening a lot. For your sake I hope that happens real soon:) Shirley- Nice pictures. I can't believe the lock broke in your changing room, that would have been awful anybody that has anxiety knows how awful that is. I am so excited that you are improving, that gives me hope! I have been really busy getting my kids in school and trying to adjust to our new school schedule. I have been symptom free for about a week now. I go see my therapist on the 13th of september and will post my new session. Hang in there everyone we WILL beat this! Stacy OO |
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Hi I have had labyrinthitis for nearly 1 year now. Had lots of time off work as I am a cook in a single person unit and unsafe to work alone with vertigo and unsteadiness. I have not left the house alone since April only when accompanied by by husband or a friend when I cling on to them and follow their every move. Had exersizes from hospital which have helped vertigo and unsteadiness but not my cognitive problems. Does anyone else suffer from this as no one seems to mention this symtom. Sometimes I think I am going mad. I can no longer do things automatically. If I meet am obstruction in the street I march on the spot as I can't work out how to walk around it. Trying to help my husband do diy he says pass the screwdriver. I have to think screwdriver thats the long metal thing with a plastic handle I then have to say it to myself then picture it then the lenghthy process of trying to find it. Driving is another problem I have only driven once since April it was frightening and it was on a good day. I couldn't work out how to control the speed watch the road change the gears and everything all at the same time. Even dressing in the morning I think knickers, picture them, work out where they are before working out which way round they go. I would really appreciate communication from others who are experiencing this. I was hoping to be back at work by now. I am seeing my GP today so I am going to mention this problem. Shirley |
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Hi everyone Thanks for the words of encouragement!! I was on Serc for a couple of months and I suffered terrible side affects that basically made it difficult for me to get out of bed; therefore I don't think my brain did very much compensating during this period. Now I am feeling much better on no meds. I take a proclorperizine if I am having a really bad day. Usually around the time of the month! Stacy - I actually live in the UK. My docs seem reluctant to put me on VRT, they seem to think I am recovering on my own. I see another Neurologist o Wednesday so I will see what he has to say. I struggle more tham anything with my eyes. It's like they don't like me concentrating on the computer or driving and I get irritsble snd feel nauseous. Does this sound familiar to you? Does anyone else also suffer from vibrations in their head that cause tingling all over the body? I have started with this and it is a very scary symptom. Thanks Ash x |
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Hi all, Stacy - how lovely to hear from you and really thrilled to hear you have been symptom free. Must say this week so far has been better for me. I have been here before though - a few days and you think you are on the up as they say then back down to the bottom again! Am so angry! This amazing VRT specialist whom I haven't met yet - let me down again yesterday. After me chasing her for an appointment for months, then she cancelled at the last minute because she was sick, then on holiday. Finally we made this appt for yesterday. Waited nearly 2 hours. No-one knew where she was, no mobile (cell phone) number. Absolute chaos and really unprofessional in my view. However, she rang this afternoon, full of apologies and am now seeing her next Wednesday. Her door plate gives her status as Vestibular Scientist!? If she doesn't know what is what, then there is no hope! Ash - hope you are fairing better today as with everyone else. Let us see how long this 'good' phase lasts for!! Fo old posters - had a message from Melissa. She is doing just great. Fully recovered apart from the odd very minor 'monthly' blip. She said she gets on with her life now and doesn't think about labs. So - hope for us all yet. Onwards and upwards. Love, Gloria xx |
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Hi all, Just wondering has anyone ever tried Vertigoheel? I was in a health shop yesterday and the woman said her brother had tried it before, and swears by it. Now she doesn't have any reason to lie to me cause her shop is in the Republic of Ireland and they're not allowed to sell it down here. So I'm going to go up to the North tomorrow and buy some. It's a homeopathic remedy originating in the U.S., and it's cheap so going to give it a try. Any opinions are greatly appreciated. I'm not too bad lately, the odd really bad day but most days are spent in a muzzy sort of a state, it's manageable but with college less than 3 weeks away, I'll try anything at this stage to get it to clear up. Hope everyone has better days. Gary. |
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Hi Guys, hope you are all having a good day. I am feeling very down today. My boyfriend left for work this morning and I sat on the bed and sobbed :-( Today is the day that I should have been receiving the results from my final exams so I think that has hit me hard. Also I have been invited to a party tomorrow night and a christening on Sunday which I am dreading! I have not been to a busy social event since this started. I really don't want to go to either but I know my boyfriend wants me there. Anyway I tried on my dress and shoes and I felt so unbalanced in my heels. I love dressing up and shoes are my favourite! LOL! so I just ended up in floods of tears again. This damn illness is ruining my life. I can't do my job that I love, I can't go places without being anxious and just wanting to run home. It's just never ending! I was thinking of dosing up on prochlorperizine tomorrow as I thought it might help with the anxiety and dizziness. I know my brain won't be compensating that day but at least it may give me a chance to enjoy my day. Do you guys think this is a bad idea? Best wishes to you all Ash x |
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Aww Ash - I really feel for you darling, I have been there and so have many others on here. I used to cry and cry and the anxiety was so bad I never ventured out and when I did I couldn't wait to get back. I think the anxiety is one of the worst symptoms of this horrible thing we have. You will learn to cope, it doesn't seem that you ever will, but you will believe me. I still cant wear heels and like you I loved my heels as I am so short. I struggle enough as it is to keep my balance, let alone with heels too - ha ha. I can't give you any advice on the prochlorperizine as I never took it - I'm sure someone else will give you advice on it. Claire - I am so sorry to hear you have had a relapse and I hope you are well enough to enjoy your weekend at CentreParks. Stacey - I am so glad to hear you have been sympton free and long may in continue for you x Gloria - Cant blame you for feeling angry, I would be fuming too. Vestibular scientist sounds interesting, at least when you actually get to see her she should know her stuff. I will be interested to know what kind of exercises she gives you. Well update on me: since my weekend away I've not been feeling all that good. I don't know if I did something to my neck on the drive up there but its been really painful and I've been suffering the old headaches again and the feelings of offbalance. I went to the doctor today and she gave me some anti-inflamatory gel to put on my neck but I really doubt it will do any good. The only good thing that came out of going to the doctor today was that she is going to refer me for VRT at my local hospital - the same hospital that told me they didnt do it. Apparently its in the neurology dept and not the ENT dept - but you would still think the ENT doc would know whether they did it or not !! I am going to try and get back to work in the next couple of weeks just so long as I can drive there of course. I need to phone my boss and ask if I can go back part time as I really dont think I could manage a whole day. Ash - I forgot to say that I also struggle with my eyes and have done since I came down with this thing. How to discribe it would be that I am over focusing on things. I still struggle with driving and cant drive long distances but short journies are ok. My councellor thinks this is to do with anxiety and she may be right. Jemma - hope your ok. Hope everyone has a great weekend Hugs Shirley x |
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Hi all, Gary - great to hear from you. Glad you are improving - so slow though isn't it?! I know I am much better than I was, but my day is still ruled by how good or bad my symptoms are - hope that one day I will go about my life thinking of all the things I love to do and not what I feel I can manage because of being overruled by my horrible, odd head. Those Vertigoheels sound really interesting - are they like an inner sole? Would appreciate any follow up you have on them Gary. You were in a health shop - is this trying to find another cure - you sound like me. I've got bottles of vits/potions and lotions all over the place! Am taking high strength B12 at the moment. Apparently, good to repair nerve endings plus good for migraines which of course is my added penance. Also Gary, what VRT exercises are you doing? Last time you mentioned you had quite a vigorous regime and do you think they have helped? Anyway, good luck with college in a few weeks. Get all your college support in place - and don't tire yourself out. Ash - having had this now for over a year (don't be alarmed - progressing) - I take some meds that I think will just help settle everything down in order to enjoy myself. My ENT consultant told me that to take medication like prochlorperazine will not hurt occasionally. For me, that zonks me out, try taking just an over the counter anti-seasickness tablet like Quells or Stugeron. Hope you have fun. It is difficult, we all know that on here, but try to have a reasonably normal life whilst you are recovering. The eye, nausea, tingling thing - I've had it, so have many others on here. What you may find is that different symptoms come and go. It is all because normally the brain, eyes, muscles, and balance systems work in tandem - when one bit of it doesn't work - it is like a mis-programmed computer! This then impacts on all the other sensory and sympathetic systems in the body. I've had awful muscle aches and pains, the tingling you mention, profuse sweating and countless other things. My vision was quite blurry at the beginning, now I can't take bright light. I get odd flashing strips of light and that thing like when you have been staring into light, look away and you see the image of what you were looking at. Anyway, have fun this week-end and let us know how you get on. S - if you are popping in on here - can I ask you about your ear. Mine has been giving me hell for the last couple of weeks. It feels like a boulder stuck down it, feels full and hot with little stabbing pains. My doctor said there is nothing there. What did yours feel like? I've only ever had this since labs started. Welcome to 'new' Shirley - sorry to hear you are having a rough time. I certainly have had cognitive problems - mostly forgetfulness. I can go out of the house and wonder what I came out for! That has got better, but I know it is a side effect of vestibular problems - more-so for some than others, but as you may read we all have different, sometimes similar symptoms so try not to be too alarmed. I do think you need to see a VRT specialist though to give you exercises. For me, also I did loads of puzzles. I bought a puzzle book and worked my way through it. My VRT therapist at the time told me to exercise your brain with problem solving exercises. I was going to say hi 'old' Shirley, but that sounds awful!! Sorry, Shirley - as we have 2 Shirleys on here we will have to nickname you. I don't want to go back to Swirly Shirley so as not to jinx you!! Anyway, sorry to hear you've dropped down a rung or so on the old snakes and ladders of recovery. That makes you feel so depressed doesn't it? I have had a few quite good days, but today I feel a bit rough again. Not so bad that I can't handle it, but as I said to Gary, it would be nice to go about life and not think of this thing. It probably is the result of your long car journey up to your Dad's. That can do it for me. You're brave about venturing back to work Shirley. I still couldn't cope. Anyway, hang on in there my lovely. Thinking of you this week-end Claire - hope you have improved? Jemma/Stacy - hugs to you both. Love to all, Gloria xx |
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Gary Just Goggled Vertigoheel. Feel such an idiot now!! Not an insole for your shoe ( thought it might be some stabiliser thing) but tablets!! Says you need a prescription (Amercian rules)? Anyway - please do let us know if it helps. Take care, Gloria x |
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Hi Gloria, Haha, I laughed when I read your 2nd post, funny how a word spelled differently can make you think of something completely different! Yeah they are tablets, and very small ones at that, you're supposed to take 3 X 3 times a day or 1 every 15 mins when having a bad patch. I picked them up today in a health shop in Armagh, a bottle of 50 tablets for £8.60, no prescription needed and will be sure to let you know how if they're good. My VRT is basic enough stuff mostly gaze stabilisation stuff as I've never had the problems with balance, I've stopped it now though, I really can't tell you if it worked or not. they didn't do any harm anyway and can always be started again. Just reading Shirley's post from above about the cognitive function problems, that was the worst thing about all this for me as well, Shirley. Gloria will remember as well from my previous posts that it was a big problem for me, my memory was poor, couldn't follow instructions or conversations but I feel I've recovered enough to return to education, so hang in there, it will get better. Time is the healer, I know everyone says that, and it probably doesn't really help you right now, but I'm almost 20 months in at this stage and feel so much better than this time last year. So hopefully the same will happen for you. Ok then all, have a good weekend, Gary. |
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hi all I have been up and down like most people on here. Some days like today are quite good, not too off balance or tired and feel close to ok at times but other days are awful and I have to say my neck is really playing up at the moment. It is just so sore and achey/burny feeling and really tight. I dont know how to get rid of that feeling. still struggling in busy social settings so I avoid them. I did email Emma of the labs website and she said she turned a corner after about 3 years so I am still holding onto hope of gradual improvement and maybe one day normality. I did want to say if anyone has not looked at the vestibular disorders VEDA website it is worth doing because it has these purple links which bring up information sheets on different aspects of the disorder. Particularly useful were the sections on the cognitive and psychological impacts of vestibular disorders. Shirley I had exactly the same thing with the ENT not knowing about VRT and not knowing if their own hospital offered it. I was referred to a neuro-physio who gave me the cawthorne cooksey exercises or a variant of them which i do twice a day. After about 4 sessions she referred me to a chronic fatigue therapist who i have seen once and I am due to start a 5 session course next wednesday for CFS/ME and chronic pain so we will see how that goes. Gloria sorry to hear about your appt cancellation again. It is so frustrating isnt it. Why cant these ENTS and specialists get their act together! Gary good to hear from you. Claire/Stacy hope you are ok. Love Jemma xx |
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Hi Everyone, Shirely(the cook)- I have not experienced the symptoms that you have described but I have had feelings as though I could not walk ( even though I could) I felt that if I walked too far from my house I would not be able to make it back. I hope your GP can help you figure this out. Please keep us posted I am curious to see what he thinks. Good luck take care:) Ash- I have had the vibrating symptoms, mine were early on but my whole body on the inside felt like it was vibrating or humming. Some times the top of my brain felt as though it was having a spasm and I would get tingling in my arms. I also had a hard time with my eyes they would do weird things if I was looking at the computer the whole screen, very quickly, would zig zag back and forth, when I would do my hair the mirror would do the same thing. When I went to my first session of VRT she told me I was over compensating with my eyes that is why when I would go into a store I would get panicky she explained that when you overcompensate with your eyes you are trying to balance too much with your eyes so when I walk into a store my brain gets overwhelmed because there is too much going on. The same with driving, there is too much going on that is why you get irritated. I was a mess, I would get in my car I would get motion sick right off the bat I could not quite focus with my eyes and then I would get irritated I would start to sweat and go home and that was only maybe a mile from my house. Your symptoms are so close to mine I think you would benefit from the exercises my therapist gave me. I posted all of my sessions, so far, back at the end of July. They helped me a lot I can drive now, use my computer without a problem I can even go into a big store like walmart and not have a problem. You WILL get better don't get to discourged or mad at yourself you have a physical reason why these things are happening and they do improve. Hopefully your outings will go well for you take care:) Gloria- I am sorry about your session. I hope she doesn't mess up next week. Thanks for posting about Melissa I am so glad she is doing good that gives us all hope! If you get better before I do you have to promise me you will continue to keep posting, I love hearing from you. I hope you are feeling better and do keep us posted about your session on wednesday. Hope you are doing good and had a nice weekend take care:) Shirley- I am so proud of you that you are returning to work that is a huge milestone! I am glad you had a nice weekend with your dad. Your driving will improve. I have the same thing I still can't travel the freeway I get to overstimulated but I will get there one day. What is up with our necks everybody here including me has a neck problem with labs it is awful! Shirley try the exercises I posted that are really helpful with your eyes, they have worked really well for me I posted them back at the end of July and will be posting my next session on the 13th. they work. I hope your neck gets feeling better soon take care:) Gary- I have hear good things about vertigoheel let us know how it works for you. Good luck with your schooling. I hope the vertigoheel helps you, let us know! Take care:) Jemma- I did not realize that you were so sick still. No wonder you have chronic fatigue I would to if I had to deal with the non stop symptoms you have had. I hope your sessions work. I am gald you have felt better though. You will get better and it is nice to see that Emma did have a full recovery after so long. Thanks for the cool websites that you post I looked up the balancesolution one you had posted a long time ago and that was helpful and fun to take the test they had. I hope your website is doing well for you. Let us know how your sessions go. Take Care:) Well I went to a miniutre amusement park this weekend it was my youngest sons birthday. It had a fast track and a slick track for race cars and laser tag and a little boat ride and miniature golf that sort of thing. I thought the race tracks would improve my driving skills so I was glad to go on those I did not get sick at all. We played laser tag and not once but twice I ran right into a wall and fell over, I obviously have a long ways till recovery, the wall was right in front of me both times. Then the boat ride was a nightmare the little boats would stop and spin you around. I started to get a little panicky but was okay. When we came home my neck was killing me I had to take 5 ibuprofen talblets and laid like a slug on my couch the rest of the night! My son had a great birthday and yes for hime I would do it again. What happend to Sandie? Sandie I hope you are well! Claire hope you are feeling better:) Hang in there everyone! Stacy OO |
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Hi Everyone, Thank you for asking after me & my weekend. it was lovely, tiring not swirly/dizzy free but something to take my mind off it all!!! Lots of cycling,walking & even swimming in the rapids (so scared of going under) luckily I stayed above water. thoroughly recommend Center Parcs the nice thing for me is it is so close to home that my hubby ttok the girls to school this morning then came back & we had a lovely long forest bike ride together. Which was good for the head but not for the bum/butt!! Who needs VRT when you have all that, I even managed a 2.5 mile run without walking yey!! I am still much the same although maybe a little improved (shh!!) I have just looked back on my first posting on here back in May when I had had it for almost 4 months & I sound so fed up so I suppose I must have improved since then as I am more upbeat, would still like it to go away now though. Doctors & VRT next week so will keep you informed. Gloria hope your small improvement is growing. Shirley glad you had a nice time away but sorry you are suffering now maybe like Gloria says the journey may have. Ash I hope you are getting more info on here than the medical profession can give. I have had a lot of eye problems more so at the beginning like my eyes were over focusing (if that makes sense) it makes the front of your head & my bridge of my nose feel wire pressure like feeling- hard to explain but i know what I mean :) Looking back I have improved in the last few months its just very slow with a few relapses along the way. New Shirley you sound lke you are really suffering :( feel for you. Jemma lovely to hear from you hope you r feeling slightly improved & the website is going well. Gary, Good luck with the vertigoheel(heal?) Keep us posted. Just looking at booking a short break for half term using my Tesco vouchers for a marriot hotel, have chosen Cardiff because I've never been there. I must be feeling better as before I would never have booked anything in advance as i dont know how I will be feeling!! Love to everyone & keep positive Claire |
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Gloria, You mentioned in your last post that Ash should maybe try Stugeron or Quells. Have you tried either of these yourself? As you know I have been using the Stugeron for about a year now and swear by it! Can knock me a bit sleepy at times but better that than a ruined outing! You also know I only take them now and again when I am going into town or for a meal. Just curious to know what you think? One of the pharmacists at the chemist told me a few months back that a lot of people buy them for dizziness not just for travel sickness. Take care. Sandie xx |
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Hi all, Sandie - how are you - lovely to hear from you! Well, yes I do take Stugeron (after you mentioned taking it) not all the time of course, but when we are going on a special outing or something when I want to be sure I can cope. As you realise this can go on for a long time, you have to resort to something - alcohol is out of the question. As you know, said I felt a bit brighter, went and had a thimble of red wine and here I am back with headaches and migraines like nothing. So can't even enjoy a tipple! Anyway, finally got to see this Vestibular Scientist - now I know why it has taken so long to get to see her - she was SO dis-orgainised. Not being unkind, but she looked disheveled and a bit of a female mad scientist type! Still she was 10 minutes late, couldn't find any paperwork under reams of goodness knows what on her desk. BUT, did she know her stuff. Blinded me with science a bit. Basically, anyone that has migraines whether MAV or not should not be doing the normal exercises. When I have a headache I mustn't do the exercises at all. What she said briefly was that the reason it takes someone with a migraine/headaches history and do the head shaking stuff puts further strain on the brain to compensate when it is already trying to deal with other ' faulty' signals that induce headaches. I have similar exercises to do, but sitting down, do them very slowly, not quickly and once a day. Also, the extra activity thing is also questionable. To do too much vigorous activity when the brain is trying to recompensate can actually have an adverse effect. I have an Autogenic relaxation tape to listen to - a tape that describes a relaxing situation that you imagine yourself in. I must do that twice a day. There is also a great deal of relevance between proper breathing and shallow breathing. She confirmed that after a viral illness or huge stress, the body will carry on mimicking the illnesses symptoms. So have breathing exercises to do every day. She also insisted I give up caffeine - gradually withdrawing over the next 2 weeks. You may want to look on the internet for self relaxation techniques and look at something called HVS Hyperventilation Syndrome. Whilst you may not be aware you have this - particularly if you don't hyperventilate, but your breathing can actually be too shallow. So worth a try. The other stuff about relation of migraines and vestibular stuff is by Dr. Susan Herdman (not sure of spelling) who has written extensively on the subject. So, on with my chill out regime - and I see her in a month. I do anticipate me contacting her as a reminder though!! Claire - glad you had a good week-end. You may just find that now the girls are back at school, you may settle down and see a quicker improvement. This woman yesterday really made me see that me thinking that I can rush around and do loads of normal stuff won't work. It has to be gradual or a period of relaxation if you have been over busy. That's my hubby doing the cooking and house-work from now on in LOL!!! Jemma - with you on the neck thing - my head isn't great either. So - 3 years to turn a corner. We were thinking only a few months last year!! Did you go away for the bank holiday week-end by the way and if so did you enjoy? I am trying to keep upbeat - you do sound resigned to all this Jemma - how do you cope with your day? Stacy - I am in awe - a fairground and you went on the rides. Well done you. Bet it made you feel better knowing that you could actually enjoy participating for your son's birthday. So glad you had a good time. Stacy have you been given any different exercises to do yet by your VRT person? Also - Claire - let us know what your therapist says when you go. Am really intrigued now about all this stuff. It's quite early morning - and going to do some chill out tape. I'll be so relaxed by the time my hubby comes home I'll fall over LOL! Keep you updated on whether any of this works! Love and hugs, Gloria xx |
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Hi Gloria I'm just the same, still suffer more at 'that time of the month' and have episodes any time it fancies! Regarding your wee drop of red wine - this is the first year since I got this (5 and a half years now), that I have actually been able to have a wee glass of wine or lager with no after effects. So in 4 years time Gloria - lol! Funny thing, I went to Scotland for two weeks in August - I was good - weather was terrible, and we went for a walk to a waterfall where the salmon were leaping. There is a small suspension bridge there. I had broken my toe just before the holiday and it was really sore - third time since I got this condition as I am always walking into stuff. This time it was the bed leg, (as if I couldn't see the bed - lol!) Anyway, I hobbled down the rocks beside the bridge and stopped there as there is no way I would go on anything that moves as that would send my dizziness haywire and my balance too. There was a gentleman about 60 years old standing there with his wife and I laughed and told him there was no way I was going on the bridge. He said "me too" and went on to tell me all about his ear problems etc. I had a good dsicussion with him and everything he said was the same as what I suffer. The bad news? He has been like that for over 20 years. Doesn't look good! Good luck with the exercises and I sincerely hope they work for you Gloria. Take care Sandie xx |
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hi all Thought I would let you know how I got on at my Chronic fatigue session yesterday. It went quite well. I was in a group of about 7 people none of whom have what I have but it was still interesting to learn about the causes of chronic pain and fatigue. I have definitely developed chronic neck pain with all this. We were taught about posture and some useful exercises to do each day. Also she recommended getting a Dynair senso ball cushion which helps with posture and balance. I did sit on one briefly and felt a bit woozy so I am going to get one to try at home. you can order them online at www.physiomedhomecare.com There are 4 more sessions (every Wednesday) and next time we will be doing hand wax (which i think is more for people with pain in their joints) and also relaxation techniques. She also offered to sign people up to acupuncture which I am defninitely going to try. She said that when people have chronic pain their nerve endings become hypersensitive and the body gets more and more efficient at transferring pain signals to the brain so the cycle contines. The plan is to work to break the pain cycle and close the pain gateways from the nerves. Gloria interesting to hear about your appt. we get so much different information from these 'experts' don't we. My vrt therapist told me not to do the exercises quickly as the brain needs time to absorb them. On the other hand some people tell you to do as much as possible in order to compensate?? when I do too much I feel all the neck muscles spasming and tightening and I then develop headache. That is why I had to stop working because the pain was getting so bad I could hardly turn my head, and I had a constant headache. When I relax these things are manageable so I do get through most days at home ok. Some are worse than others though but overall if I take it easy I can do all the basic stuff without too much trouble but my head usually feels 'off'. I didn't end up going anywhere on the bank holiday because my boyfriend was ill with flu so I had to look after him for a change. I am going to see 'Evita' at the Lowry this weekend though so hopefully I will feel ok for that. Claire, Stacy, Sandie hope you are all ok too. Jemma xx |
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Hi Sandie, Thanks for that!! I'll start organising my celebratory drink now so in 2014 I can look forward to 2 thimble fulls?LOL!!!! Not sure I feel encouraged by the chap who has had dizziness for 20 years- still, he IS still alive to tell the tale!! Glad you felt OK on holiday Sandie even though the weather was rubbish. I have a feeling that we will experience the same when we go to Cornwall in 2 weeks. It's always fine until we go away. Anyway big hugs to you and take care. Jemma - your CFS sound interesting. I wonder if they will get you to do the same relaxation stuff as me. I have to do something called Paced Breathing for five minutes twice a day and then listen to an Autogenic CD at least once a day but twice if I can manage it. I did it yesterday - you really do relax, but it takes an hour. I was lying there thinking of all the stuff I should try to be doing - maybe that is why I need it! So sorry about your boyfriend not being well Jemma - hope he is OK now and that you have a good time going to the theatre this week-end. Let us know how you get on with the sound levels and everything. Just going to get my neck massaged and manipulated now to see if it releases any of this tightness - AGAIN! Hope everyone is OK. Love, Gloria xx |
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Hi everyone Hope you are all feeling well! I made it through last weekend. I even managed to wear my heels to the party and have a glass of wine! LOL! I took a tablet to help me through but at least I managed to enjoy myself for the first time in ages. I see the neurologist on the 20th of this month and I am hoping he sends me for VRT therapy as everyone else appears to be reluctant to do it. Don't get me wrong my balance is not as bad as some peoples on here. I can do the standing on one leg etc pretty well on my own but I still get jelly legs a lot of the time and I am really struggling with my eyes. My GP mentioned that he thinks I sometimes feel queasy in the car because I am anxious. He thinks because I have felt like this in the past now I always expect it to happen and get it into my head that I feel sick again. I don't know if he is right; maybe he is a little. I know I am always nervous when I step out of the house nowadays. Stacy - You did so well to go out for the day with your son. I can't imagine ever going on anything again that spins me around! LOL! I have printed off your exercises and am going to start doing them each day. Claire - so glad you enjoyed yor holiday. My boyfriend wants us to drive to the South of France at the end of October. We went last year and it was beautiful, but I don't think I would cope with all the travelling. Gloria - I might try Stugeron. Do you think it may help with my nausea when I travel? Do you take 1 or 2 tablets? Hope you all have a lovely weekend. It is that time of the month for me so the dizziness and headaches always kick in a lot worse. Mind you I cannot complain because I wasn't as bad the week before like i usually am so I should be grateful I suppose! Take care all Ash xx |
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Hi Everyone, Nice to hear from Sandie & Jemma. Sandie I only just realised how long you have been suffering with this, you officially win the award for the longest sufferer on here at the moment, not really an award you want I'm sure!!! Dont like the sound of the 20 yr sufferer you bumped into, poor chap. Jemma, your CFS does sound interesting I definitely agree with the whole relaxation being a help with this condition good luck with accupuncture I am quite interested in this. Interesting what Gloria said too about the breathing & over breathing I was told this by my therapists too & was given relaxation techniques plus I listen to a hypno CD although havent had too lately. Ash, your symptoms sound very similar to mine I also am solid as a rock when given balancing exercises but get the jelly legs alot I call it dizzy legs! Try sturgeron on a long journey, we travelled to Paris in Feb when my symptoms were at their worst & it helped me travelling in the car & euro tunnel. I am off to Staffordshire for a hen weekend in 3 weeks so will be taking some then & we are going to Alton Towers!!! so may need them that day too. As for the alcohol I have hed the odd glass on good days & as long as I dont have too many then I can handle it & feel ok the next day. One thing about this condition is it has made me healthier, Gym, running, cycling less alcohol no caffeine more water so at least there is a plus point. Going to see the Docs on Monday to talk about my 'time of the month' pattern with symptoms to see if I can have something to help with the fluid retention. Then VRT on Tuesday and I am working for 2 weeks solid too so wonder how its all going to end up!!! Hi to Stacy, Gary, Shirley hope you are all doing okay :) Anyway love to everyone else Claire |
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Hi Jemma, Sorry to hear about your neck problems - I learnt very early on to relax my neck - trouble is that you stiffen it to try and keep your balance and dizziness under control. I did anyway. Also, the back of my legs were so sore because I was always trying to hold my balance. As regards your exercising Jemma, I wouldn't overdo it. I have never been one for doing VRT as I was told that you would get there in the end whether you did it or not. For people who have had it so long i.e. me and you I don't think anything actually works. I often wonder if it is because the virus which caused all this actually did more damage with us. It a long road if you don't recover within the normal time scale but hope is still there! Do you go for long walks? This is the main thing that helped me in my worst times and I still keep that up. Enjoy the show! Gloria, yes that guy was still alive to tell the tale and this is one thing you have to hold onto - keep telling yourself that it's good that you don't have some awful life threatening disease! We can wobble on for years and years! Ash, must say, my balance was all over the place and I couldn't walk unaided a lot of the time but I could still manage to stand on one leg. Very strange isn't it? As for stugeron, I find it really helps but wouldn't advise that you take it too often. It does get me through a lot of things and I can actually do more normal things now. Claire, thanks so much for that award - lol! I actually keep in touch with a lady on one of the labs websites who lives very close to me and suffers symptoms very similar to mine and she has had it for 6 years. A personal friend of mine who I have known since we were young has had it about 8 years and a lady who used to post on here when I first started posting had had it for about 30 years. In my experience with it there are a lot of people who suffer for years and years. I do however, have good times, it never completely leaves me and I have bad relapses which take me months to get over but hey, I'm still getting on with stuff! I am hoping that when I get through menopause (I'm 49) things will be better because that time of the month really affects me, but lots of woman are older than me with this and it hasn't changed. I also worry about when I am much older - how will I cope? Anyway, hoipe you are all ok, take care. Sandie x |
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There is a God! He has put me in the direction of this forum!! Firstly, I cannot tell you how relieved I am to read others' experiences of labs as I too thought I was well and truly going off my rocker with this. This is now my fifth week of missing work and at this present time, I seriously am concerned of ever being able to go back (I'm a teacher). Like many others I've read about today, I've been a prisoner in my own home for the past month and feel that I've become a completely different person. From once being sociable and friendly I now can't be bothered with anyone or anything and feel like a terrible mother to my only daughter. I can't concentrate, am cranky and uptight, as well as being hugely irritable.I have lived in joggy bottoms and a hoodie for a month (Make-up...what's that?!!) My symptoms are like all the others that have been described on here - fullness in the ears, constant headaches, feeling like I'm about to pass out, etc,etc. I can't tell you how reassuring it is to hear from you all that things can only get better!! My question is - this all began when I took the medication Metronidazole for helicobacter. The very next day I came down with this. I had had au upper respiratory infection during the summer and the doctors are blaming it on that. As I say, I was completely fine before I took the Metronadizole and have since read that certain drugs can provoke labs. Was just wondering if any of you guys has heard the same? Much love Bridie xxx |
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Hi Bridie and welcome! Yes, you are right that certain drugs can cause the onset of labs but I would go with your doctor's theory that this is due to the upper respiratory tract infection. That is the most likely cause. (Not that I have any faith in GPs with my experience - lol) The same happened with me although it did take a while to hit me real bad. I had the upper respiratory tract infection and it was the first time I had ever lost my voice completely. Straight after that I started to feel dizzy, though quite mild dizziness on the grand scale of things, and I just didn't feel right,. But I soldiered on like this for about 6 months taking the odd Stemetil given to me by the doc. Til one morning, bang, it all went crazy! I couldn't even lift my head off the pillow for three days and lived in that bed for the next few months thinking I was on the verge of death! I didn't go back to work until the seventh month and I was by no means recovered, though much better. I've been very unlucky with this and still suffer after five years. Never as bad as the first time but I relapse every few months and it can take me months to get back to what is now 'normal' for me. I sincerely hope you are one of the lucky ones, some people are only affected for two weeks then make a complete recovery, some people six weeks, six months or even two years. I still live in hope - lol! While I know you are feeling awful, take one day at a time, don't beat yourself up about it, just do the best you can. You will find that lots of people don't understand and will put it down to you being neurotic and anxiety ridden - ignore them! Accept you have an illness and you will get better. Even if you don't (like me) you will find what you can and can't do and you will still have a good life. How old is your daughter? My youngest was only 8 when this happened to me and she has been my rock. Keep her well informed and she will help you. My daughter is 13 now and she knows exactly when I am feeling unwell just by looking at my face even when I am trying to cover it with a smile! She just knows! Anything you need to ask, feel free, everyone is lovely on here! Take care Sandie x |
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I am a long time (over a year) labs sufferer and I have a question. I am recovering somewhat and I feel a lot better than I did at the beginning. Awhile back I booked a cruise thinking I would be feeling all better by the time it came around, now the cruise is a month away and I am not all better. It is only 3 days, and I would hate to miss it. I am scared that I will feel terrible on the boat or worst case scenario I will go back to square one with my imbalance when I get off the cruise. Has anyone had any experience on a boat or ship while they've had labs? |
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Hi to all Welcome to the site Bridie. It took me 3 months to find this site since i first got ill and what a godsend it was. You are only at 5 weeks which seems ages I know compared to other illnesses but is not a lot with this. However you may be lucky and recover within the 3 to 4 month standard time scale given by the doctors. I just wanted to say that I do believe labs/VN can be caused by medications. The jury is still out on whether mine was but I think it may have been or maybe i just got a virus, I'm not sure. I have heard quite a lot of people like teachers who work with children get labs maybe because they are in contact with lots of viruses. Good luck and hope you see improvement soon x As for me, well Sandie yes I think you are right. No magic cure and not even sure if VRT works or not. My balance has improved since the beginning but as it has done so my neck has got more painful. Its almost as though my neck is absorbing the dizziness or something like that which causes it to be so tight and painful. At the moment there is this burning aching feeling which is like the nerves are all sensitised. Gloria, how is your neck these days? Well i went to my NHS physio today and she offered to do the acupuncture there and then which I agreed to. She put about four needles in my legs and one in each hand then i started fainting. She took all the needles out straight away and I had to lie on the bed with my legs raised trying to stay conscious. I am home now but got a headache and feel pretty yuk. I am quite squeamish but did not imagine that happening to me. So it looks like that is another treatment that won't work for me, how annoying!!! I enjoyed the show on Saturday. The noise levels were fine. Felt a bit woozy at times sitting on the vertical slope looking down at the stage in the dark but overall I coped pretty well and it was just the pain in my neck which was bothering me most. How is everyone else? xxx |
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Hi everyone, Bridie I know how you feel I felt exactly the same when I found this site 'almost' made me feel better!!! Like you I was the same at the start of all this. Not sure what meds you are on.Back in Jan I had been prescribed Amitriptyline for anxiety but looking back I was suffering all the symptoms of labs then I got a really nasty virus in Feb & it all kicked off. I went to the Docs 5 times before I was referred to ENT Long story short was told it was Labrynthitis had several tests including MRI scan & given VRT exercises, these are to retrain the brain to compensate for the damage caused to your balance (vestibular) system. Been doing those for 8 weeks now, not sure if they are working? At the start I couldnt go out didnt want to see or speak to anyone couldnt work,drive,shop or barely hold a conversation. I have two girls aged 12 & 10who are old enough to be independant, I couldnt have coped with little children. Gradually I saw slight improvements & this helped my confidence. I started walking then going back to the gym & have continued to stay active ever since. Gave up alcohol & caffeine as they do make it worse although have very occasionally enjoyed a small glass of wine recently. I have good & bad weeks & mine is all very much centered around my menstrual cycle & aggravated with a cold. I do still believe it will go & some people recover quicker than others, but if you can just get out a little even for a short walk it all helps the brain to compensate for any damage. Also see your doc for referral to ENT & maybe have some VRT I think if you start sooner then the recovery should be quicker. You've come to the right place!! :) Sandie How scary that you know so many people who have suffered for so long Cant be good for the confidence. I think I understand now that this thing does come in 'peaks & troughs' or as Gloria says its like a game of Snakes & Ladders!! I too am really bad around my period. Latest news for me is saw the Doc today who suggested I might want to try the contraceptive pill (I'm 40) but as there are so many other side affects of that not sure if I want to try it. Anyway he is now referring me to a neurologist got appt for Oct although not sure if its worth it as I'm sure they cant do anything but its all peace of mind!! I am not convinced by VRT at the moment have an appt tomorrow so see what they have to say but I am worse at the moment than when I started it. Anyway Bye for now Hope everyone is doing okay Claire |
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Hi everyone! I'm so glad to have found this site.. and thank you to all of you who are willing to share your illness experiences. I'm a 28 year old female who was diagnosed with a 'viral ear infection' on August 16, 2010. Two weeks prior to that I haven't been myself since. I get headaches on/off, waving-senation dizziness, foggy feeling in the head, extreme loss of appetie, inability to fall asleep, night sweats, anxiety, depression, fast heart beat, chest pain and occaional short of breath. It's been 7 weeks now and I just don't feel like I'll ever get back to normal. Like some of you had mentioned, my primary doctor thinks it's all in my head and prescribed me citalopram. He said it would help with the head aches and chest pain which I don't believe it will. It might help calm me down but it probably won't do anything else. I have a 3 year old and a 2 1/2 month old... with this thing going on, my life is just a mess right now. I'm seeing an ENT doctor on Sept. 15. Hopefully he can give me a solid diagnosis. Thank you all for reading. kia |
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Hi all, Welcome to Bridie and Molly. Not been on for a few days - chaos here at the moment. My god-daughter who is getting married in 5 weeks - is in the middle of having an ectopic pregnancy! She is 31 and I know they are anxious to start a family because she feels she is not getting any younger! She didn't think she would fall so quickly - well, if we all had a crystal ball. As her mum is in Devon, I'm her London based mum, so you can imagine treks to hospital and endless worry. Too late for lectures now though. As you can imagine this has set me right back. My head feels it is in a vice and every muscle and nerve ending in my head are so sore, it is driving me nuts. Anyway, enough of my sagas. Bridie and Molly - sorry to hear you are fellow sufferers. Bridie, mine all started with the worst chest infection I have ever had in my life. Here I am 14 months later. This is the most bizarre thing I have had. Whilst I am 'better' than I was last year, but go through so many odd, horrible feelings I wonder if I am getting better. Like you too - couldn't have cared less about how I looked or anything. Now, still have odd horrible feelings, anxiety, swimmy headiness, but do go about my day and make some sort of effort with how I look. It is a huge struggle sometimes and I did have to give up work albeit part-time, but I do miss it. You do get used to feeling odd and knowing it may take a little while before you fully recover can be a shock, but once you accept that and know you are doing more over time. A huge number of people get over this much more quickly than some of us on here - so be positive and remember that. Molly - we thought of orgainsing holidays at this time, thinking I would be well recovered by now. The only advice I could give you is to go but take some sea-sickness meds. Not ideal, but you need to keep your brain from going overload with motion. What does your GP advise? I would so love a holiday abroad, but couldn't think of coping with flying and being too far from home and my comfort zone. Anyway, Molly, Bridie - this is the place to vent anger and frustration. It has been my saviour. Jemma - thrilled you enjoyed the concert. Good for you. Like you Jemma, I am not so much dizzy these days, but have huge problems with headaches, pains in my head, my muscles in my head feeling tight and reacting to my balance rather than being dizzy if that makes sense. Again the nerve sensitivity is horrible - perhaps it is part of the recompensation process. The thing is you mention these thing to the doctors and no-one knows. Why is it that so many of us suffer these symptoms but the doctors are never aware of them. AAARRRGH!! I've given up on the acupuncture too. Gave me worse headaches. She said it has to get worse to get better, but do you know what - not interested in putting up with more rubbish! Claire - so sorry to hear you are not good at present. I've had a few rotten weeks. I thought - like you - I was on the up but knocked back down that snake again! It totally knocks your confidence when you go back down again. The last week i have nearly felt like crawling into bed and totally giving up - but that is defeatist and I'm not going to let this monster win! Like you have given up the caffeine and no alcohol apart from my thimble the other day (not a good idea), doing these wacky relaxation tapes and paced breathing, still doing some VRT - but like you - not convinced. I think for some it works, others it may help but it certainly doesn't cure. TIME, TIME, but given I am so impatient - that is not helping! I was referred to a neurologist - he just wanted me to go on all sorts of anti-epileptic meds and anti-depressants! I think that is all they can give. Will be interested to hear what they have to say though Claire. You do sound down my lovely, it is so wretched this thing, but let us all think we have had good spells and I am sure they will get longer and longer and the bad less and less. Big hugs. Sandie - you are definately our shining light on here. Whilst you have been unfortunate to have had this far too long, but you do put perspective on it and calm us down - well, you do me. I have to believe it will get better than this. Now, I will just be happy for the time to come when I feel markedly better and go about my day more normally, and the bad feelings are less. Ash - so glad you had a good time the other week-end. Taking meds just to have a reasonable time, I think is worth it. I have only taken 1 Stugeron, probably should take 2, but don't want to be too drowsy. Gary - if you are checking in - how is the Vertigoheel doing? Shirley (1 and 2)/Stacy - thinking of you - hope you are doing well. Catch up soon, Love & hugs, Gloria xx
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Hi all, The vertigoheel doesn't work. It's like SERC I guess, works for some, not for others. Frustrating, cause I read great reports of it. Am considering giving the Stugeron a shot to try to take the edge off the visual crap I have going on to see will that work. Do they make you really drowsy? No point being in class if I'm falling asleep. Got a cold last week which has set things right back, but just registered in college today, so going to give it a shot. My tinnitus is really loud atm, and the brainfog is quite intense. Worst case, the course can be pushed out another year. We have a few new folks here, welcome, I'm sure you'd rather not be here but hopefully it won't be for too long. Take care everyone, Gary. |
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Hi Jemma, Just to say about your neck and that burning, tingling feeling you get - I actually get that in my face, even now. It does feel like the nerve endings. I think we definitely suffer nerve damage with this virus, not just in our ears. Flaming heck Jemma, you started fainting with the acupuncture, what did the lady who was doing it say about that, was this a normal reaction, I guess not? The show that you went to has just brought back an awful memory for me. A few years ago we went to the pantomime and I thought I had booked for the royal circle which is just one level up but I had actually booked for the one that was right at the top of the building. I nearly died of shock when we opened the door and the feeling of unsteadiness was awful. I told the usherette about my problem with my ears and she very kindly relocated us at the back of the Royal Circle. I did actually try to get to the seat I had purchased but I practically crawled down the stairs (how stupid I felt) and knew I wouldn't be able to stay there for the show. It was awful! Claire, mostly for me now these balance problems and dizziness are worst at period time too. I've never been able to use the pill due to problems I have had with that so that would terrify me! I've never actually seen a neurologist but there again I haven't asked to be referred. I think my feelings have been for a long time that it is all a waste of time! I know Gloria has spent an awful lot of money looking for a cure and really she is not greatly improved. Hi Kia, I so feel for you having your little ones and having to deal with all this. All of your symptoms are typical of Labyrinthitis. The dizziness, foggy head, headaches, loss of appetite are all normal. The chest pain and fast heart beat will be linked to the anxiety and depression that you feel. This is also normal with Labs and VN. Your anxiety levels are controlled by a nerve which is very close to your inner ear and just about everyone gets it especially in the early days. Let us know what the ENT say today, and any questions you have for us don't be shy to ask! Gloria, I can't believe it's actually 14 months for you! I do hope that your god-daughter is ok. I too have a wedding on 20 October. My step son is getting married so I'm looking forward to that. They will be trying for a baby straight away so I might be a granny in about 9 months!! Noooo I'm too young - lol! Molly - I don't want to be a killjoy but my consultant told me that I should never get on a boat and I have stuck to this. He said flying should be ok but I personally wouldn't risk that either though lots of people on this board have flown and been ok. I don't remember anyone saying that they have been on a boat? I don't know if you know about mal de embarquement - this is a very similar thing to what you have but is caused by being on a boat. As Gloria says, if you do decide to go, take some travel pills. Yes Gloria, I wonder about these doctors too, isn't it funny that when you talk to them you are ALWAYS the first one to mention feeling like that. As you know, I have a friend who suffers like me and we both see the same doctor. When they say that I feel like telling them that actually I'm not the only one as my friend sees you also, but I bite my tongue. Thanks a lot for your kind words and pleased that I can help! As for the Stugeron, I usually take one at a time too unless I am feeling extra dizzy then I will take another one about an hour or so later. The most I took was four (over the space of about 10 hours) when I went to see Green Day last October. I didn't take that many when I went to see them in June this year as I did feel a lot better then. Jeez, looking back to June I don't know how I managed it. Taking my daughter by train to Manchester all by myself and going to a gig with nearly 50,000 people! This is why I always say that the illness controls you because one day you can do something like this and the next day it would be impossible. Gary, as I have just said, I took four stugeron over appx 10 hours when I went to a concert and I was full of life. If I need to do something like go to town shopping or for a meal etc I will take one and then another an hour or two later. This doesn't make me feel particularly drowsy. I do yawn a bit but I do that anyway - lol! Last time I bought some the lady at the chemist told me that loads of people use them for the same reason as I do. Hope the studying goes ok for you! Take care everyone Sandie x |
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Hi Sandie I do agree with everything you say. I kind of instinctively knew very quickly with this illness that it was not like anything else and it would not resolve quickly or in the way that most illnesses do, that is why it freaked me out so much. I agree with you that there is no quick fix or cure, we just have to ride it out and hope it improves in time. Yeh the acupuncture thing was weird! I am squeamish and I have nearly fainted a few times at the sight of blood on TV or reading about injuries or blood etc but this hasnt happened for ages, like since school days. I never thought i would faint at the acupuncture because whilst i dont like injections i have never fainted at one. I am trying to figure out if it was needle phobia which caused the faint or whether it was a reaction to the acupuncture. Apparently the needles are meant to stay in for 30 mins, mine were in about 10 seconds!!! The lady was probably a bit shocked but perfectly nice about it. She said it is up to me if i want to try it again. I probably wouldnt but since Monday my energy has improved a bit and so i am tempted to try it again. I was sitting up last time so maybe i should ask to lie down. Kia and Molly welcome to the site. Hope you get some good info here. Molly I can only echo what Sandie says about the boat. I personally would not go on a boat. I am terribly seasick anyway but with this I would be terrified of triggering Mal de debarquement or something. It is up to you of course but may be worth considering cancelling or at least postponing... Gloria so sorry to hear about your god daughter. I really hope she is ok. I can totally empathise with how you are feeling symptom wise. If anything causes me anxiety or i have to do a lot or rush to do things my neck tightens, all the nerves tense up and my balance goes worse. It's horrible isnt it but what can you do? Sometimes things have to be done dont they. Do let us know how things go. Claire hope you are ok and coping better. Hope everyone else is seeing better days. Jemma x |
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Hi all, Just popped in to say welcome to Kia. All your symptoms resonate with me totally - and for me extreme nausea. This is an alarming thing to have and what probably scares all of us is no one knows how long we will have it for. There are a few of us on here that consider ourselves 'veterans' (Sandie being the longest). That said we have all reflected that we are loads better now than when it all started. OK - our symptoms still take some dealing with, but we are up and around and coping, albeit wanting to scream out loud with frustration at times. My sympathy is with you in the fact you have to cope with 2 young children. Many many people get over this within a short period of time and I'm sure, with a little positive thinking and some patience, you will see a difference very soon. You have to accept this is not like a cold and improvement takes a few weeks rather than days. You will get there Kia. Gary - thanks for the info. I know the feeling - read about some 'miracle', buy it, try it and - nothing!! You must go ahead with your studies. Deal with what you can when you can. They know about your condition, so should be thoroughly supportive. I am thinking about doing something in the adult educational field. I need to get some semblance of normality back into my life rather than feel a complete outcast because of how I feel. Stugeron i don't find makes me drowsy if I take one - just takes the edge of things, but I do try not to take it regularly. Sometimes I take a couple the night before a day out and then one on the day if I really need to make sure I'm OK, but that is rare I will do that. Anyway, all the very best Gary - do keep in touch and let us know how you are doing. Jemma - I had 2 goes with acupuncture - I am loathe to try again. It gave me a day or two of feeling OK, but then the headaches hit big time. If you go again, let us know how you felt second time around. For me, I don't know, but I think the paced breathing and relaxation tape thing may have something to it. It is early days, but the last day or two whilst not fantastic has been a bit better. Yesterday as I was busy didn't do either and today feel so much more heady and dizzy! So will make sure I do them over the next few days and let you know if it does make a difference. Sandie - yes, 14 months and I'm with you on the nerve damage, the nerves at the base of my skull and behind my affected ear are so sore and sensitive. Also, just to let you know i actually did finish painting our front door and looks good even if I say so myself. We may think of moving next year (into a luckier house LOL!!) so have a few tidying up paint jobs to do, but we are already talking of Christmas in this family - can you believe it!! Bridie/Molly/Kia - hope you are holding on in there. Keep in touch. Claire/Shirley - love to you both. Hugs, Gloria xx |
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Hi everyone I have had a pretty bad week. It as been that time of the month and I always feel so much worse. Hoping it will settle down by the end of the week. I see the 2nd neurologist tomorrow. I'm hoping for a miracle but i know that I am not going to get one! LOL! Anyway I will let you kmow what he has to say. Claire - I am on the pill and I still suffer around the time of the month so I am not sure if it would definitely help you. Jemma - I see you have previously mentioned that you get migraines. Did you always suffer from these or are they a result of this dreadful condition? I have been getting headaches recently but I'm not sure if it is just all of the muscles tightening in my neck and head. To everyone else - hope you are all holding up ok. Ash xx |
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Hi Jemma, I shouldn't laugh really but I can just imagine you with the acupuncturist! I'm the same with needles, don't like them at all but have never passed out yet! My brother-in-law had an injection a few months back, he is 38 years old and he passed out, what a silly boy, haha. Anyway Jemma, I must say that you seem to be coping with all this very well, you have accepted what has happened. You were so distraught when you first started posting (just like me). Gloria, as I said I still get these tingly feelings in the face, and I'm convinced they are nerve endings going mad. Also, I just realised the other day that I used to get weird feelings in the back of my head just above the neck and I haven't had them for ages. It was a noise I used to hear/feel which was like crinkly onion skins. Now, that was a scary feeling. I also used to get this pain above my left ear which used to come from nowhere and make me feel terrible. I used to think I was going to keel over and die when I got those sensations, but I haven't had that for a while either. Lots of strange things happen with this condition. Glad you got your door painted! I was going to do mine again this year (same colour just another coat) but I never got round to it. I did do the en suite, kitchen, utility room and downstairs toilet and I'd had enough when I finished that lot! Where are you thinking of moving - same area or somewhere else? I moved into my present house nearly four years ago when I was over a year into Labs and it was tough but I managed it. I was also still working at the time! Take care Sandie xx |
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I have just come across this site and feel great relief at finding other people who are suffering the same symptoms as me - you tend to think you are on your own. My syptoms started in April 96, with what I was told was Viral Labyrinthitis, a conndition which i was also told would last up to a week.I didn't know then that it would return several times a year and each episode would last anything from 6 weeks to my latest nearly 10 months. My symptoms are very much like everyone else's- off balance, nausea, headaches, tiredness,eye sight problems ear problems etc etc.I think one of the worst thing is the unpredictability of this illness and the way it eats away at your confidence.I am now having more good days than bad and feel there is a normal phase looming. Unfortunately I have been diagnosed with BPPV and Vertigo related Migraine and find it difficult to find advice ,and consistant treatments, although would be willing to try anything to get relief -like all of the people who post on here ! |
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Hi Everyone, I have been perusing this thread for quite a while and slowly getting to know the regulars over time. I have had what looks like labs/vn since Jan. 2009. Anyway, some recent postings have prompted me to put my two cents in because I believe a lot of us do not suffer from "uncompensated labyrinthitis" but actually have developed migraine associated vertigo. Perhaps the lack of compensation may have to do with the secondary migraine process or another likely scenario is that there was never any inner ear damage and what we are experiencing is just a migraine, or a neurological screw up rather than an inner ear screw up! While migraines generally come in the form of attacks, it is possible to have a continuous 24/7 dizziness as a result of the migraine centering in the portion of the brain that also connects with the vestibular system. And you don't even need the headache to be diagnosed with Migraine Associated Vertigo. The tingling, for example, is classic migraine. Dizziness is the second most common symptom of migraines! The treatment is the migraine preventative diet and if that isn't enough, they will also prescribe migraine preventative meds. I personally have not tried the preventative meds--I am too much of a health nut, but have been doing the diet and it does help a little bit. I also take magnesium citrate which has cut down on headaches. Wishing us all relief from this dizzy madness! |
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Hi Sue and Tina, welcome to you both. Sue you sound a bit like me. I have good phases and bad phases and really bad phases. My longest really bad phase has been about ten months (during this phase I had to give up my job, this was last year). This 'phase' was my longest but not as bad as my first phase which lasted about 6 months, that was horrific. Hey, guess what, I was also told it would last a couple of weeks - hahaha! Mine also returns several times a years and sometimes can be a two weeks episode. I'm never totally free of it but these relapses are really bad. Tina, interesting stuff, while I know that you do not have to have actual headaches to suffer from MAV does it also affect your balance? I still suffer balance problems. I only have the occasional headache and most of my 'heady' symptoms have gone but I still suffer dizziness and definitely can link it to my ears and times of the month when my body is full of fluid. Also, when my ears feel full and pressurised I feel more dizzy. I am convinced that my problems have been kept going by the fact that I suffer post nasal drip and have allergies which I cannot control. Sandie x |
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Hi Sandie,yes we do sound similar. I have been following everyone's ups and downs for a while. Like you I also gave up work and on my good days think that I ought to start looking for a job; I've even got as far as getting through the interview and being offered the job, only to have a relapse and then have to tell the potential employer I'm unable to accept their offer. Long term this plays havoc with your confidence and self esteem, let alone your mental state of mind. As I said, I do feel like I'm coming out of this phase - I just wish I knew what I did to feel this well because I would have done it months ago ,then I'd tell everyone else! As for pressure in the ears I also get that and was told to chew gum. The migraine diagnosis has slightly confused me as, although I know that you don't have to have the headache, does that mean that for the last 10 months I've had 1 long migraine albeit varying in intensity each day? Sue x |
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Thanks for the welcome. Yes, Sandie, the migraine centering in the brain stem's vestibular neurons could cause ear pain, fullness, tinnitus, disequilibrium, rocking, swaying, vertigo as it probably affects the nerve endings that run to the inner ear. One of the triggers for migraine is hormonal fluctuations and that's why they are more common in women. My understanding is that there can be a continuous hyper-excitability in the brainstem that causes these symptoms perhaps due to neurotransmitter imbalance, low serotonin perhaps, who knows. However that being said, it is also possible to have both inner ear damage and migraines. Migraines can appear after a head injury, so why not after an inner ear injury. |
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Hi Sue You are the same as me, I found out the chewing gum remedy years ago - never without my orbit now! When I was still working I even used to chew at work 'on medical grounds' - lol! It really does help and when I have to go out I chew! So sorry you had to refuse the job. I haven't worked for over a year now, I relapsed last Jan 09, then had to give up my job in August as I still wasn't recovered. I felt great pressure to get back to work and it wasn't doing any good for my symptoms. I might add that I didn't really get much pressure from my work but over the space of five years with them I had had over two years in sick leave. For me, I would be terrified to get another job because I know I would relapse again. I still have a lot of symptoms but they are not bothering me 24/7, but that would change with the added pressure of holding a job down. I live a very quiet life now and it kind of keeps the symptoms under control. Tina, everything you say sounds very sensible. But, it just frustrates me so much that I have never had any help with any of this. The GPs are clueless and the ENT is the same. I was diagnosed with vestibular neuronitis by the ENT. None of them have mentioned MAV. I just feel that for the amount of people who suffer all this stuff there is so little help/research being done. Indeed I went back to my GP for my asthma last week and decided to mention that I was still suffering with all this stuff and it was like 'oh', and nothing else! Have you actually had a diagnosis of MAV and by whom? Do you think you will ever take the meds if you continue to suffe? This scares me too as they are probably quite complicated drugs, and would have to be taken regularly. Would you like to share your migraine preventative diet? Take care Sandie x |
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Thanks ladies, for welcoming me. Just wanted to update everyone on my condition. I saw the ENT on 9/15/2010. After listenning to my symptoms for about 2 minutes, he quickly interrupted me, shook both my husband's and my hands and said my symptoms were'nt ear related at all..that he'll type up a good report and send it to my primary physician so he can move on to other things. And that was that. My original appointment with the Neuro wasn't until 10/5/2010 but someone cancelled and I was able to get in yesterday, the 17th. The Doc wasn't the greatest to talk to but after listenning to my symptoms and spending a lot of time checking my eyes and doing a physical, he wrote me a prescription for Valium. I asked him what I have and he said "Vestibular Neuritis." That was a relief for me. For the last 7 weeks, I thought I was doing crazy...feeling as if I was not here 100%. I knew there has to be a solid name for the ear infection but just have not met the right doctor. Now I know what to tell my family and friends so they can understand if I ever lack behind or miss family get-togethers. It's also great to know that I have friends in here who will understand me..maybe even better than my family and friends because we are all in the same boat. kia |
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AAARRRRRRGGGGGGHHHHHHH!!!!! Sorry guys but I am so mad and angry. I went to see another neurologist yesterday that contradicted everything the ENT and previous neurologist had said. He does not think I have VN because in his opinion it never lasts more than a few weeks so he defo ruled oit that. That isn't what my ENT said. My ENT consultant said it could last upto a year! Anyway he thinks I have MAV. I don't get any pounding or thumping headaches, just a tightness at the bottom of my head and at the top, along with lots of pressure. I also always feel like my right eye and cheek is swollen even when it isn't. Anyone else get that? He said tingling, vertigo, dizziness, sensitivity to certain lights and nausea are classic migraine symptoms. Thery are also classic VN symptoms i wanted to scream!! He prescribed the drug Topamax. Anyone tried it? It is used as an anti-convulsant and in the prevention of migraine. Anyway he totally scared me when he told me the side effects. He said I would lose concentration, be depressed, have pins and needles in my body and lose weight. I weigh less tham 8 stone now! My family don't think I should try it until I speak to my GP who knows me a lot better. I just don't know where to turn to next. 3 consultants, 3 different opinions! There is a neurotologist in Cheshire and I am wondering if he is my last hope. Anyone suggested MAV to any of you guys? Love to you all Ash xx |
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Hello to all of you from me, Lory! I just found this site and haven't yet read a whole lot of it yet. Right now it is 9 am and I slept only intermittently all night, as usual, unless I take sleeping pills, which I do not like to take. I have had vertigo for over 8 and 1/2 years. They call it labyrinthitis. It is chronic and always the same: unlike many of you, my vertigo does not come and go or get better and worse. It is always there 24/7 and I have just adapted somewhat to it, though I hate it, especially the BOREDOM. It trashed my previously energetic, busy, happy, non-insomniac country life. I had an intractable middle ear infection (or so my MD thought) in January, 2001, for about 3 weeks. I have a history of these since I was a child. After the third week I suddenly, in the course of one afternoon, became so dizzy I couldn't get out of bed, was nauseous and vomiting, and wanted to die. I live in a very rural area in a college town, so I went to a local not so specialist ENT who finally gave me Meclizine, after a month of torture, which helped the nausea, but not much more. I have traveled far to various large cities to see specialists of all kinds and all they seem to do is shrug their shoulders after tons of testing. PT exercises slowly began to help me adapt, and over the years I have kept track of symptom improvement such as how long I can function before I must rest my head, my tolerance for loud noises or loud music, my tolerance of unfamiliar environments with lots of visual input such as stores or restaurants, and how often I fall down (I haven't fallen yet this year!). I seem to have reached a plateau about 3 or 4 years ago and not much has changed for the better since. I feel like I live underwater all the time, or on another planet with a strange atmosphere. I feel cut off from other people; I can't remember faces very well, have trouble with eye contact, and find talking to more than one other person at a time just too exhausting to be enjoyable. So needless to say, I am very isolated. I tried to work (I am a family therapist) part time for 10 or 12 hours a week and it was hell. I was exhausted by just 3 afternoons a week every other day so I could rest up in between work days, and I know my work was not up to my previous standards. So I quit my career altogether and am now on disability because I also have several other unrelated health problems as well. Since June I have been seeing an acupuncturist for chronic pain and I love it so much!! I went into it as a non-believer, but that doesn't affect the process one little bit. Don't think of what they use as needles; the tips of the pins are narrower than baby hair and you can't feel them at all while they are in there. It has amazed me how well it works. When my pain from several sources is under control we are going to work on the vertigo. He has had successes in the past, but not in all cases. But I plan to keep an open mind about it because no one else has been able to help me at all. Besides, acupuncture has been such a therapeutic experience from start to finish, I look forward to my sessions. My healer listens carefully and thoughtfully to what I say, and provides an environment of beauty, peace, and optimism. It is so much better than seeing ordinary yucky doctors. The only problem is that my insurance won't pay for it. They are happy to pay for lower back surgery, but not for acupuncture which works as well, is safe, non-invasive, and has no risk for anesthesia or for making my back problem possibly worse as an outcome. I just wondered if anyone else has had success with acupuncture. I also wanted to find out if there is anyone else like me with a constant steady case of vertigo, and what you have done that has helped. I will be happy to let you know how the acupuncture affects me once we get started on it. Meanwhile, I live in this strange murky world which has lasted so long I have forgotten what it is like to have energy and be "normal". But I know I'll love it when I feel it!!! Lory |
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hey its me again been without internet for a few weeks, problems with my modem , Gloria you asked me how my ear is feeling to be honest it feels exceptional i have none of that fullness, tinnitus or muffled hearing in my affected left ear for about 6 months of course my main issue that remains is my 24/7 swaying / light sensitivity and poor balance at night although im not sure if my terrible balance is caused by the swaying sensation itself if that makes sense, im wondering if anyone could answer what causes this 24/7 swaying why did my body start to feel these false motion sensations after my initial spinning room attack 10 months ago? i really hope that this feeling will go its incredibly debilitating to feel like this for 10 months and i want to live my life again. |
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Hi everyone, not having a brilliant day,I think the shopping with my daughter has set off the "off balance" swirly head thing.It took me just over a year to get to see a ENT specialist was given a handout with exercises to do.At first I thought that there really was an answer to this awful illness,I had lots of tests and was diagnosed with BPPV after that I was given Amitriptyline and told they didn't need to see me again.The symptoms have come and gone and I've seen several GP's and yes i have to agree, they are on the whole underquallified, disinterested or just plain rude.During my recent bad spell I was feeling so ill that I had to see an out of hours doctor, who inspired me to go back and demand to see another specialist, preferably ENT. This I did, but was told I would be better with a Neurologist.I got the appointment just over a week ago and was given the same diagnosis as the GP had given me - migraine, for which i have been taking Atenolol.The neurologist has changed it but I have to wait for the GP to receive the report, and then I will get my new prescription.I'm not sure how long it will take to write and receive this report, but like everything to do with this illness seems to take time!I've tryed other things as well as conventional medicine - Pilates, Reiki healing, herbal remedies and just recently The Bowen Technique - will keep you posted! Best wishes to you all Sue x |
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Hi all Wow lots of new people coming to the site! Lory sorry to hear you have been suffering for 8.5 years! that's even longer than Sandie. I have had the constant off balance, no energy feelings for 17 months now so I can empathise. I am just beginning acupuncture treatment. You may have read in my last post that i fainted at my first treatment but i do want to give it another go because my energy has improved a bit although my balance has not been good these last few days. Sandie I am just the same as you. If i take it easy and live a quiet life i can just manage but i know i just cannot do the things i used to. With regard to the migraines, I do suffer these occasionally and I did get visual migraines every now and then prior to this. I do get headaches but i am not sure if they are related to labs or if i would get them anyway, they do make my balance worse but any little thing can do that, a cold, flu, tiredness, etc etc. Ash I saw you mentioned Cheshire which is where I am from. Do you live locally? Did you say whether you have family/a job etc? I can empathise with the different things you are being told by the doctors. I have been through the same thing but they are wrong about VN only lasting a few weeks. The virus itself might but anyone who has symptoms longer has probably got vestibular damage which is permanent and the brain has to learn to compensate. This can happen quickly for a lucky few but for many people it takes as long time and for some it may take a lifetime. I agree with Sandie, there needs to be a lot more research, consistent advice and support for us sufferers. I would not want to go back to my GP about this because i know i would get the same "Uh oh" response. Gloria hope you are ok and your god daughter too... S sorry you are still suffering. I can the swaying feeling is still the residual off balance feeling we are left with after this. Hopefully it will fade in time. Claire how are you? xxx |
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Hi All, Lory, sorry to hear you have been suffering for so long. Hope the acupuncture will relieve some of your discomfort if not all of it. Sandie, I basically told my neurologist that I thought I had MAV, he mumbled something like: " Oh that was in the back of my mind as well!" I told him what med to prescribe for me based on what I had read in the book "Heal Your Headache" by David Buchholz. However, after a lot of thought, I decided not to take it; it was a tricyclic anti-depressant. The other meds are calcium channel blockers, beta blockers, and anti-seizure meds. With all my discomfort, I am still not ready to go down that route. I am able to work and do the bare minimum, buy and make food and drive myself short distances. So while that sucks, I fear the side effects long term from the meds would be worse. That's just my opinion and it may not be so for someone else. So I am still on the search for what is really wrong with me. I have a sense that migraine is really a symptom and not just an entity on to itself and that its presence denotes that there is an imbalance somewhere in the system. I am on the search to find out what is really gone haywire in my system. That imbalance may originate in the digestive system, for example. OR it could be that our fight or flight system has been overused due to stress, and so our adrenal glands are depleted. (Jemma, the adrenals may be your issue.) The adrenals have an affect on our hormones and many other systems in our bodies. Anyway, so I have been trying to keep my adrenal gland as content as possible, by keeping my blood sugar levels as stablel as possible, eating small frequent meals, no sugar of any kind. And slow diaphragmatic breathing when I remember to. And lots of walking. And I never watch the news! The "MAV" diet is: No caffeine, no chocolate, no avocados, no bananas, no aged cheeses, preserved meats, no citrus, no fresh baked bread, no fermented foods, nothing with MSG in it, like Chinese food and many packaged foods that say "natural flavor" in the ingredients, Basically to avoid problems just prepare everything yourself. I personally have also stopped eating dairy, except for butter and wheat. So I only eat gluten free bread and pasta. It is a boring diet, but it did help me a little bit. The magnesium is also a big help. I am still on the look out for a "cure" I am pretty sure I have nerve damage somewhere in the vestibular system, but I also know that this migraine process is getting in the way of my brain compensating as it causes a fluctuating condition. The brain needs a stable baseline from which to relearn how to move in space. That's why I think those who have migraine in their background should do what they can to bring those "attacks" under control, so their brains can more quickly compensate. Here's to a cure or at least more research into this field. MAV was once called: "Floating Women's Syndrome" I think any ailment that predominately affects women is going to be last on the list for research and funding--unfortunately. |
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Hi Kia Ha, welcome to the wonderful world of GPs and ENT consultants! I have been loads of time to the ENT and always less than five minute consultations! Guess why I don't go back - lol! My final diagnosis with the ENT was VN which is very similar to labs and most doctors don't distinguish between them. I was told that I had been diagnosed with this because I had trouble with my balance and my balance nerves had been affected. Kia, print something off from the internet so you can show your family and friends what you are suffering. You also have to understand that most people do not 'see' any physical signs of your illness and you can look pretty normal. They have no idea how it feels - they just think you are avoiding them! Ash - hold that scream in! The more you see doctors and consultants the more angry you will get. GPs are the worst - they haven't got a flipping clue. You can tell them everything and then next time you see them it's back to square one. Many, many, people have had this for years so it beggars belief when they say that it lasts for two weeks! I would be very wary of taking any drugs for this condition as they do interfere with your brain and the main problem with Labs/VN if you go over the normal two week period is that your brain is not compensating for the damage done to the inner ear. Maybe you should research this MAV condition a bit more before making a final decision as to whether to take the pills. It might be a good idea to see the neurotologist as I think they have more expertise in this area, not that I have ever seen one! Oh Lory, you have taken my crown from me - I was only awarded it a couple of weeks ago by Claire for being the longest suffering at the moment on this site! Eight and a half years! It's five and a half for me! So sorry to hear your story and you seem to have an awful time with this condition. I have suffered all of your symptoms over the last five years. I still do have an aversion to loud noises, though some days I can turn the music up full blast! It's the same with busy places, sometimes I can cope with it sometimes I can't. It is a very strange world for me too. I live an extrememly quiet life now but I am better since I gave up my job - I can cope with it better than being on a seemingly never ending roller coaster of having to work. I only used to work three days a week but it was very tough. I also still suffer from extreme tiredness. I am glad that you get some relief from your other painful conditions with your acupuncturist and it will be interesting to see how that goes for you. I must say Lory, I don't think I will ever get back to life before I had this condition, when I was here, there and everywhere and loved life. But I still live in hope! S - not sure how long you have had this condition but will advise you that for me the swaying 24/7 sensation didn't kick in until I was about 4 months in with Labs. This first experience with it was awful and it was with me all the time - I couldn't walk outside without assistance and would always have one hand on the wall indoors. This stage lasted for a couple of months and then started to lessen a little bit. I used to feel like I was walking on a moving floor and my legs were terribly weak, like I had feet made of marshmallows. If I was standing still (in a queue) I would feel like I was swaying and if I was hanging on to someone at the time they would feel it too. Anyway, in all, this lasted for about 6 months and then it completely went away. Unfortunately, it was only for a while and over the last five years it has come back regularly to haunt me. Sometimes it is just a mild senation but when I have one of my relapses it is horrific. I feel like my brain suddenly moves in my head and I have to grab on to something/someone to stop me from completely falling over. Funny thing is I have NEVER fallen over. I even grabbed onto a gentleman when I was out shopping on my own once as it comes over me so suddenly - that was embarrassing! Sue - totally agree with you about doctors - seems that we all have this problem - they are just not interested. I had one GP say to me "so, what are YOU going to do about it". Jeez, I had tried everything and been so positive about everything that was happening to me - I told him in no uncertain terms that HE was the one supposed to be helping me! Jemma - keep hold of the fact that you will get better my dear. I know I'm not recovered and can't do the things I used to do and I would so love to get back to work but you know it's not so bad. Things could be a lot worse! Agree with you Jemma - it does make you very reluctant to revisit your GP when you always get the same reaction - we all just tend to suffer in silence. It really makes me wonder if any of these GPs actually do any research at all into medical condtions - most of them only seem qualified to dish out anti depressents and paracetamol. Tina, I am with you on the issue of taking drugs you don't need into your body. In my early days with this condition I was offered anti depresents but refused - no way! I do acknowledge the fact however, that they do help some people. As for your anti migraine diet - I just about have that already! I eat mostly organic - no chemicals for me, don't take caffeine (hate coffee!), small amount of dairy, and don't care for cheese, avocados, bananas. I researched MSG years ago and make sure it is not in foods I eat now. I've never suffered migraine anyway but agree with you that there is definitely something out of synch with my brain. As Jemma says, the virus leaves your body after a couple of weeks, it is the damage left behind that the brain can't cope with. Hoping everyone has a good day. Sandie xx |
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Wow so many new posts & sufferers welcome everyone!! So many people with the same symptoms & so much knowledge about the condition, shame the Neurologists, GP's, ENT specialists dont look on here!!!!! I am due to see Neurologist in October & I already have a heavy heart about it & think it will be a waste of time. I will not be pumping myself with any pills they try & hand out especially if they try & fob me off with anxiety/depression. I have managed now pill free for 6 months out of 8 & hope to stay that way. My VRT therapist I saw on Tues did mention migraines & she thinks the Neuro will investigate this. As for VRT I have been given some new exercises but feel reluctant to do them as I have lost faith. Also very very dizzy/head pressure/swirly at the moment its 'that' time of the month again & for some reason just to make things worse my body has decided to give me a 3 1/2 week cycle instead of 4!!! Bring on the menopause :( Reading all the stories its horrible to see so many people suffering & some for so long. Sorry Sandie but Lory has beat you now!!! Gloria how are things & how is your Goddaughter? such a worry & that wont help your symptoms. Keep going with the relaxation stuff I def think it helps a little. Shirley/Sandie/Jemma/Stacy & all the newbies hope you are doing okay :) Hugs everyone Claire x |
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Hello everyone Thank you Sandie, Gloria, Jemma and Claire for your very kind words of encouragement, you have no idea how much you lifted my spirits. A warm welcome to Lory, Sue and Tina, hope you're all feeling much better! I just thought i'd let you know that I'm feeling much better and hope to be returning soon to work, God willing. I had been having the "snakes and ladders" scenario for the past wee while but for the past week or so I feel as though I'm getting stronger and have more good days than bad days. I'm going to share something with you all. Last Thursday night i attended a faith-healing service and was prayed with by two Christian ladies. I explained to them that I had labrynthitis and told them of the pains in my head and ears. I also explained the dizziness etc and the horrible feelings of extreme anxiety. After the ladies prayed with me, I felt better and have noticed a gradual improvement since Thursday. I managed to get to church today (first time in weeks) and have managed to go shopping this weekend without feeling like I was about to pass out. I am feeling much more positive and am beginning to see myself return to work - something that I had thought virtually impossible. I have no doubt in my mind that Jesus is responsible for my feeling better and I would like to encourage others to put their faith in Him if you haven't already done so. Thanking you Richard for this forum and warm wishes to you all. Bridie xx |
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You are very fortunate, Bridie that you have your faith. I think that faith can play a major role in one's ability to heal. Take heart, Claire. Sandie, and all the other suffering souls on here, (It's too hard on my dizzies to scroll up and down and find all the names!) Maybe with our collective voices, minds, and information, something will shift and the medical establishment will start to pay more attention to this ailment, rather than just throw an anti-depressant at us. Or perhaps, over time like good detectives, we can uncover the mystery of these symptoms and then figure out how to treat it. I still think a lot of us may have migraine even though we have never had bad migraine headaches ever. One of the telltale signs is a tendency towards motion sickness as a child or a family member with migraines. So a vestibular insult like an inner ear infection could possibly kick in this latent tendency. Of course, the reason for the dizzies may not be the same for everyone. For some it may be MAV stemming from hormone imbalance as these dizzies seem to appear at the age when women's progesterone levels start going down. For others it might be from a subacute viral or fungal infection-- Epstein -Barr Virus, Herpes, or Candida that causes a continuous inflammatory process in our nervous system. Who knows, but I hope we can figure it out and free ourselves, so that we can go back and have a life once again!
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Hi everyone, Welcome to all newcomers - so interesting reading about everyones' situations, but sad we are all having to use this site at all! Tina - I have been particularly intrigued with all you have had to say. Whilst I started off and know mine has been labyrinthitis, but it is all the other symptoms it causes along the way. As a life-long migraine sufferer, it didn't take the specialists too long to seize on that fact and say that is why I'm still with all this rubbish after 15 months as my migraines are hampering my recovery. Ash - like you, and Claire, you too, it is the head pressure thing and constant head pains and sort of headaches (not migraines) that are such a challenge to deal with. I was described Topamax - read all the side effects (horrendous), but took 1 tablet to try - no more for me! I am trying to deal with this naturally. i.e. not take anything other than an ibuprofen as and when. Anyway, after my god-daughter's wedding at the end of October I might just have to consider taking Amitriptyline again. It did dampen everything down a bit even though it made me put on weight. I just need a bit of respite. Jemma/Sandie/Claire -Thankfully, my god-daughter seems to be out of danger. I just fear that this will impact a little later after the wedding when things settle down. She has been through such an emotional whirlwind. Well, I see another ENT consultant on Friday - with particular regard to my ear and how it feels like I have a pretty constant ear infection. I will also be interested to hear his views on my condition. I am so far down the line now I am sure he will say it is not labs or the result of!! As everyone else can testify - doctors responses at best are vague and worse totally dismissive. We are off to Cornwall for a weeks break on Friday - can't wait. At least I can feel horrible in a nice part of this country away from all the noise and commotion of London! Take lots of care everyone. Gloria xx |
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Claire, Bad news for you - you might be starting the menopause if your cycle has shortened - lol! Mine shortened a few years ago but I am older than you at 49! Thing is with menopause it goes on for flaming years doesn't it. Good attitude about the pills Claire - they in themselves bring a host of problems. Bridie, so happy that you have your faith and a positive attitude does help you so much with this condition. Keep fighting! Tina,I have mentioned this before in my postings, and you speak a lot of sense. Over the years, before this condition, I have suffered from travel sickness but not to a great extent. However, when I was a child I never ever went on swings or slides or a roundabout because they used to make me so ill. Same as an adult, I'm the one always standing watching! Has there always been something there, I ask myself. Gloria, so glad your goddaughter is feeling better, poor thing. What date is the wedding? My stepson's is 20 October, not long now. Dreading it a bit - I know I'll be fine at the actual wedding itself and the reception probably but the night time disco - just have to take that as it comes. It's so awful when you can't even be sure that you will be well for your son's wedding isn't it? Take care Sandie x |
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OMG everyone I am so scared!!! I went out shopping yesterday and did really well, almost dizzy free. Then around 8 last night the vertigo kicked in and it does not want to go away. I have the severe pressure feeling behind my eyes that I had at the very beginning and I am worrying that I am suffering a relapse :-( The only other thing that I can think of is that I had my eyes tested yesterday and maybe all the straining on my eyes and moving them into different positions has started it off again. I'm praying this is not a relapse. Even stugeron is not taking it off. All you guys refer to dizziness but do you also still suffer from any vertigo? I still get the feeling that something is shifting in the back of my head and the room shudders a little. Jemma - I am from the Leeds/ WAkefield area. I am going to see the Neurotologist at the Spire hospital in Cheshire on Saturday. Have you seen him? Gloria - I am glad your God-daughter is on the mend. I have not touched the Topamax, I daren't. Don't know why I even bothered to pay for the prescription LOL! Claire - you have done so well to get through this almose pill free. How do you cope with the nausea? I think this feeling is just as bad as the dizziness. Sometimes I just want to take a stemitil to help relieve the nauseaous feeling rather than the dizziness! I have just hit the 5 month mark and I feel like I am back to square one. Will I ever be able to finish my studies and return to work? I am at the point now where if someone said take this and you will be dizzy free but your brain will be uncompensated then I don't think I would care. I think I would take the pills. I have totally had enough of it all. Hope everyone else is having a better time of it!! Love to you all Ash xx |
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Hi all: haven't posted in a long time, although I have kept up reading your posts. Sorry so many of you are having such a tough time. It does get better but it takes forever. And I am not sure, once you have it, if you are ever completely cured. I have been better, but the thing comes back from time to time. It came back at the beginning of the summer, then I had to put my dear dog down because of Cancer, and it's been acting up on and off ever since. There are so many odd symptoms I find, but I find it almost always hits my stomach, like the beginning of the flu, Haven't been well in a about a week, although I have to admit the symptoms are not nearly as dire as they were for the first year or two. I'm going on three years, but the periods in between episodes are longer, and the episodes themselves shorter. I don't understand that it brings on flu-like symptoms, although my doc told me it was a virus like a coldsore and would flare up from time to time. Like most of you I am frustrated when it flares up, because I thought I was over it. But those of you who are still in the early stages, take heart, It gets better. But I wonder if we have to accept the fact that this may be a permanent condition. And that we will always have flare-ups. Sorry to be so down. What a pain this illness is. Love to you all Maria xxx |
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Maria, it may be that yours originated with a herpes virus. You might check with a doctor, but lysine, a supplement and vitamin C have helped some people with the herpes virus. Ash-I sometimes get a brief vertigo spin when I turn over in bed, but mostly I feel rocking, swaying, false motion, and heavy head. I think that there will be blips along the way. The recovery for this thing is not linear, but the fact that you felt dizzy-free at 5 months is wonderful! You are in better shape than me. I haven't had a dizzy free moment since this began almost two years ago. Gloria-Have fun in Cornwall! Don't be surprised if the ENT can't enlighten you. The weird thing is that migraine can cause ear symptoms: Fullness, tinnitus, ear pain. It's just that the placement of the migraine that changes the symptoms from headache to ear symptoms. So it is hard to know what is actually from a virus that hit your inner ear and what is from a migraine. it could be both at the same time. Or even more weird, there is no inner ear involvement at all! But rather it is a neurological disorder from the migraine. But there's really no way of knowing for sure since the ENG can only test a portion of the vestibular system. Probably the only way to know is if you were to take the migraine preventative and slowly raising the doses and found that your symptoms disappeared over a couple of months. Amitriptyline is one of the meds they give for migraine., by the way. Sandie-Yes, I think sensitivity to motion is a genetic predisposition that may cause this condition to linger longer for us. Maybe having labs oversensitized our brains so now it interprets every movement as a merry-go-round ride! Like you, I used to be the one to get carsick as a kid and never really enjoyed carnival rides. As an adult, I would get nauseous and headachey on winding mountain roads, if I wasn't driving. But never had the migraine headache where I had to lie in a darkened room and was nauseous etc. I just had the occasional headache like everyone else. . For those of you who want to try, there have been studies on a gluten free diet helping people with headaches and dizziness. I have been doing it; it hasn't helped me, but it might help one of you lovely people. |
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Hi all, Maria - I was only thinking of you the other day and wondered how things were considering last time you were elated saying you thought you were out of this at last. I am so sorry about your poor little dog - no wonder you have had a relapse. For me, our animals have always been part of the family and devastating when something happens to them. I am with you on the stomach/flu thing. When really bad, I get horrible upset stomach and of course the sickness and bad sweats. Presently, for me, the dizziness is quite a bit better, it has left me with virtually constant headaches/migraines of one sort or another! 15 months now and I feel emotionally and physically wrecked. You clearly have been on top of this and loads better and I'm sure that will soon return - keep us posted on how you are doing and take care Maria - hugs to you - oxox. Ash - so frustrating to feel better then back you go - down that old snake on this board of snakes and ladders! I would love to know if anyone has ever reached the top of 'the board' and won LOL!!! I had/have the nausea badly with this. It was horrendous for the first few months, but let me say, it does wear off. I now feel more nauseous only when its really bad but am not physically sick like I used to. Rather than take stemetil, I took to drinking a good quality ginger tea from a health shop. It really does help and better for you. Sue - You were diagnosed with this a long time ago. In between attacks, do you feel quite OK? I agree with what you said about has this been one long migraine for 10 months and if you were diagnosed with MAV, why wasn't it the same before? At the onset of this for me I had a terrible chest infection and clearly was labs. Although had horrible, odd head pains, I didn't have my normal migraine for quite a few months. It was as if it stopped it. Then as my dizziness is getting better, and, hopefully, me as well, the migraines have kicked in big time as if they are making up for lost time!! So confused with all these nightmare symptoms I don't know what is what any more! Tina - Thank you for your wishes. I am sure you are right about the outcome on Friday - I'm not holding out much hope I have to say. It will be interesting if I go back on Amitriptyline whether it will have an effect. We'll see. I am loathe to try it again - I so want to try without all these meds. Bridie - I am so pleased you have received comfort from your faith and feel better for it. Tina is right - that to have faith does help our ability to heal. Sandie - have you bought your outfit yet? Like you I am dreading it a bit as not knowing how I'll be. Especially as I have them all staying here!! My god-daughter will be going from our house here. (It's on the 23rd) So on the day there will be all of us, her and 3 grown up bridesmaids and 3 small bridesmaids aged between 4-6 and a pageboy of 4 years old plus mums to help them get ready! I think my hubby is going to move down to the garden shed!! I, by then will probably have taken a packet of Stugeron and anything else to handLOL!! Anyway, our old mantra - keeping the faith we will be rid one day of this monster. Love and hugs to everyone, Gloria xx |
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Hi everyone Maria it's nice to hear from you. I was thinking of you as a success story so sorry to hear your symptoms are still flaring up. I do hope things keep improving for you though. Keep letting us know...xxx Tina I didn't realise you had this so long. You have obviously had plenty of time to research this. I agree with you on the adrenal fatigue theory for me. I still think I have vestibular damage but it may be that this has worn out my adrenals because I do fit a lot of the symptoms for that with the fatigue, needing to eat sweet food to keep up my energy levels, having energy crashes, etc. That was one of the possible things I found at the beginning of all this when I didnt even know it was ear related! As for the migraines, I looked at 'floating woman syndrome'. Apparently Janet Jackson has/had this a couple of years ago. It is like MAV. I am someone who suffers badly from travel sickness and have the migraine gene in my family, however I thought MAV was more like attacks of vertigo rather than the constant off balance feelings. A VRT expert told me over the phone that those with the migraine gene find it harder to compensate for vestibular loss because it is more difficult for their brains to re-process the balance imformation. Gloria like you I did not really have any headaches at the start then it seemed to me that as I started to compensate the head and neck pain really ramped up a lot and now that is a major symptom along with the off balance feeling (which has improved at snail's pace). Ash I visited an ENT at the Spire Regency in Macclesfield and also another one at the BUPA Alexandra Hospital in Cheadle. Neither were any use to me. They did refer me for caloric testing and an MRI scan however they seemed to know nothing about vestibular disorders especially as mine did not show anything on the tests. The only person who talked any sense and referred me for VRT was the NHS neurologist. The VRT sessions have now led me onto a Chronic Fatigue course and sessions of acupuncture because I don't think there is much more they can do for the dizziness so they are just targeting the fatigue and neck pain now. Sandie your son's wedding is on the same day as my birthday. I hope it goes well. I had to back out of a few weddings last year due to this, not family ones though. My sister is having a baby soon so I am almost hoping she is not planning to get married anytime soon because I don't know how I could cope with that. Gloria I hope you have a lovely holiday in cornwall. I still haven't braved a holiday yet. I just don't feel like spending the money if I might not enjoy it but I do hope you have a good time despite this monster. Glad your god daughter is ok too and hope the wedding goes smoothly from now on. Claire and Stacy - hope you are both ok... Take care xxx |
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Hi all, Tina - forgot to ask in my last post. You mentioned that taking magnesium citrate has helped your heads. I have got it but am useless at taking tablets regularly - I do forget, but if it is worth taking then I make the effort. Similarly, I was told a few months back that a herbal thing called Butterbur Petasin had good reports on minimising migraines. V. expensive but I did persevere for 3 months but alas, nothing. Anyway, what dosage of magnesium do you take Tina and when (night or morning)? Jemma - lovely to hear from you and thank you for your good wishes. It does seem that our symptoms are very similar and running similar courses. My neck and headaches seem to be my main bugbear right now. I would love to go abroad for a holiday Jemma, but I think well, Cornwall is in this country, even if I feel rubbish at least it is in different scenery and if I really am bad, well we can come home. Not quite the idea of a holiday, but at this stage I'm grateful for anything. Lots of love, Gloria xx |
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Hi everyone: Gloria thank you for your good wishes. You are right, having to put my darling sheltie down really upset me. I am still upset. Probably brought back the Labs,whch is the last thing I needed. And you are right, pets are members of the family, and when they go, it's heartwrenching. Tina you are 100% right about the Labs being originally a herpes virus. That's what the Doc wrote in his report. Vitamin C can upset my tummy, that's the problem. Sandie, sorry to hear you are still battling this thing after all those years. It's so tough because you are never entirely sure if it's that or something else. love to you all xxx Maria |
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Ash, you have to realise that the feelings you are having now are absolutely NORMAL with this condition. You are very lucky to be able to go shopping all day! Even when I went back to work I still wasn't able to actually go into the town all day it - would be just a quick dash to get essentials! You must remember that your brain is working very hard to try and compensate and every now and again it will forget what it has learnt and you will get the symptoms back again. With each relapse I have had my dizzies and symptoms have been different and I have definitely suffered from vertigo. During my worst times with this I feel like my brain is actually moving about in my head, it's so bad. Try and keep positive Ash, I know it's hard but keep going! Maria, hey girl, nice to hear from you. Yes, I'm still here but must say this is the best year I have had with this condition, mainly because I had to give up my job. It definitely helps not to be constantly on that merry go round. I had a massive relapse last year which lasted about 9 months so something had to give! So sorry about your dog - that must have been heartbreaking for you and as you know Maria stress is a trigger with this condition. I do hope you feel better soon. Gloria, you are so brave having all the action at your house on the wedding day. Luckily, it's my son that's getting married so all the action will be at the bride's mother's house! My own two daughters are bridesmaids and my other son is an usher so it'll be a nice quiet house for me! Yes I have my outfit. Dress from Next and Jacket from M & S, not going for a hat as I just don't suit them! Are you all sorted? Jemma, I too have crashing fatigue with this and have had it all along. I first put it down to my ferritin levels being low but I have managed to get that up (after 2 years on heavy doses of iron), and it hasn't made any difference. So, I think now that it is all part and parcel of this condition. Maybe because the brain is working so hard and gets tired more quickly. Did you realise that your birthday is on 20.10.2010, this is the reason they chose to get married on that day! Mad, or what! Isn't it awful how you wish that people didn't have celebrations because you know that you will not be able to take part and can't plan anything? I have missed three paid for holidays with my parents because of this condition, only in Scarborough, but nevertheless not able to go. I missed my niece's engagement party a couple of months ago because I was so ill. You feel so guilty because you can't go but there is nothing you can do. I was talking to a young lady today whose mother's boyfriend has this condition. He is 56 and has had it for twelve years. He was a policeman but had to give up his job. She then went on to tell me everything he suffered - exactly the same as me. Whilst it is awful for this person it is also nice when you hear of someone else suffering the same as you, because you still worry even after all this time that it is something more serious - is that a wicked thought! Take care everyone Sandie x |
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Gloria, I take 400 mg. in the morning and at night before bed. |
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It's been awhile since I posted, but I felt like I might actually have something of use to say :) Ash - VN can cause BPPV, so it's possible you have VN and you are currently suffering a bout of BPPV. That is the case with me. For 15 months I've suffered from VN and its accompanying constant off balance/spacey feeling, but a few times during that period I have had spinning room vertigo. I do the epley maneuver at home and it clears up the spinning. If your spinning keeps up just google epley maneuver and see if it's something you want to try. |
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Hi all, Well it has been a stressful summer for me, but not because of labs. My symptoms of labs are all but gone. The only time I feel a bit swirly headed is two days before my period is due. It is so managable. I usually take a water pill a few days before and a nasal spray. Gloria, I am mad that you are still on here! Not at you, at the labs! You should be off this site and onto better things. Hve you any other info on why it is still lingering? Gemma, Brad, Sandie, Shirley, Gary how are you all? KEEP THE FAITH!! You will get better! Melissa |
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Gloria- whoops I made a mistake. It is 200mg in the morning and 200mg at night that I have been taking. It was confusing on the label because serving size is 2 pills. But I have heard of people taking higher doses. The only side effect is possible loose stools. |
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Greetings all, I'm 34 and have gotten hit with labs twice. The first time (about four years ago), the problems resolved in about a month, and I returned to normal. The second time (3 years to the month after the first incident), I'm still having issues after eight months. My odessey began at the end of January this year when I awoke in a Montreal hotel room really hot. When I rolled from my side and sat up, it felt like I was on a ship in the high seas. The room went 45 degrees on me. I stumbled my way to the bathroom, where I threw-up and then started getting the chills. Having had labs before, I knew what it was and knew I had to avoid moving my head from side to side or looking down. Let me tell you, it was a long, slow, nerve-wracking drive home. Anyway, I suffered with positional vertigo for several weeks and even awoke several times with the room completely spinning 360 degrees. The vertigo eventually stopped (thank goodness), but then I started experiencing other issues, such as labored breathing and chest pains (perhaps vertigo induced panic attacks). These issues eventually passed too. The one thing that has not passed, though, is virtually chronic head discomfort. Several weeks into this journey, I began experiencing pressure and radiating sensations in my head and face and fullness in my ears. I most commonly get it at the back of my head, but I also periodically get constricting feelings in the forehead, nasal area, and upper gums. I used to get it at the top of my head too, but that part of my brain seems to have repulsed the attacks for good. On a scale of 1-10, the discomfort is typically about a 3, sometimes higher (when sitting for long periods or at the beginning of the day) and sometimes lower (often when I'm physically active, sleeping, in the shower, or toward the end of the day). At times it feels like someone has played soccer with my brain, while other times it feels like someone rubbed Vicks vapor rub on it. No matter what I'm doing, I'm always thinking about how awful my brain feels. Whenever it's worse than normal, I tell people I'm having "a spell". I'm constantly up and down in terms of how I feel. I've had good days that have tricked me into thinking that maybe this hell was over, only for the discomfort to come back again. So, what has the medical community done to help me? Nothing. I had a brain MRI (normal). I then insisted on a spinal MRI (normal as far as possible causes of headaches are concerned). I then insisted on blood tests (after a positive lyme titer, two confirmatory tests were negative). I sought a second opinion, and that doctor thought I could have a sinus infection, so he put me on an antibiotic for that. I then went to an ENT, who told me that my problem was not sinus related and suggested that maybe I have intracranial hypertension. He told me to see a neurologist. I went to a neurologist, and after tickling my feet (no joke), he told me that I'm neurologically normal and that I'm probably just having muscle tension headaches caused by an unknown virus. He advised that if they didn't go away eventually, I could try infectious disease. Well, the headaches didn't go away, so I tried ID. The ID doctor tested me for all sorts of specific diseases and cultured my blood and couldn't find anything wrong. Then she sent me for a spinal tap (which gave me the worst, debilitating headache of my life for 10 days - DON'T EVER GET A SPINAL TAP!), and that came back normal. The ID doctor suggested that I go back to a neurologist. Oh, and did I forget to mention that in my desperation, I went to a chiropractor (DON'T EVER GO TO A CHIROPRACTOR!) thinking spinal misalignment might be causing the head pains? He reaggravated a healed back injury, causing a herniation to my L5S1, which put me out of work for a month. All totalled, I have used 8 weeks of sick time this year. Just ridiculous! And to top everything off, as a result of the spinal MRI, the radiologist who evaluated the images found suspected cysts on my kidneys, which a subsequent ultrasound confirmed. That got me diverted to a nephrologist who determined that my kideny function, despite the cysts, is currently normal. So, the doctors, in essence, managed to find what's going to kill me in 20 years, but failed to find-out what's killing me now! At this point, I pretty much have diagnostic fatigue. I have no confidence that anyone will definitively diagnose the problem or fix it. I would have been happy if they had found a terminal disease because at least I could rest assured that I would not have to go another 20 years being "healthy" on paper but feeling like shit all of the time. This problem has affected my mood and lifestyle in so many ways. The only thing that keeps me going is the realization that I am probably incrementally getting better VERY slowly. As much of a nuisance as the head discomfort is, I currently feel much better than I did this past winter and spring. But one thing is for certain: 2010 is a total loss for me. It's amazing how you can go from healthy to a basket case in about 4.5 seconds. And it all started with labs! |
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Hi all, Tina - well, I did as you said and took 400mg in the morning and last night!! Wondered why my tummy feels a bit 'off' this morning LOL!!! That said, my head does feel easier! Anyway, will try to do 200 x 3 to make it easier to digest and see if my stomach is better - it isn't horrendous anyway. I'm also taking 1000mcg of B12 - another possible for migraines. Have you heard of that one? Not taken it long though, so will wait another month to see. Thanks for replying Tina - hugs to you ooo. Melissa - sorry to hear that one stress has been replaced by another - hope things are better for you. You KNOW you mustn't have stress in your life if you have had this monster. Yes, you're right - I'm mad too that I'm still on here. Not because of everyone here - as you know I feel so comforted by having made so many lovely friends of whom have helped me as far as this without totally losing the plot - you included. I'm not so dizzy any more - off balance at night, but it is all the headaches rubbish I'm dealing with now. Whether that is another phase of hopeful progression - I just don't know. Anyway, a weeks holiday looming on Saturday - weather will be rubbish in this country, but fresh air, sea and an escape - perfect. Lovely to hear from you. oxoxox. Sandie - yes, I'm suited and booted as they say. Will post a picture on this site as my thumbnail after the wedding! It will make a huge change to see me dressed up for once. After this last year or so, dressing up and doing my hair and make-up have not been my priority and frankly couldn't have cared less. Maria - look at lysine instead as a way to deal with viruses - especially the herpes thing. Tina mentioned it before. A neighbour of mine had shingles a few months back and he takes lysine which he feels has helped. It will be interesting to hear from you about how long it takes you to get back to where you were. Hopefully, it should be shorter lived and less arduous - although even less symptoms are still awful aren't they?! Love to all, Gloria xx |
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Hey Melissa, So nice to hear from you and hoping that your stresses have been nice ones! I have always loved the school holidays but you can be so busy doing allsorts with the kids, you do get a bit exhausted and stressed! Great that you are so much better and only suffer once a month! I am good too but it still comes back to haunt me and period time is not good for me, but at least I am better than I was five years ago! Just waiting for the next relapse - hopefully it will never come - lol! For me, I think it's all the allergies I have that make it linger - or maybe it's not - basically I just don't know! Gloria - I hope you have a wonderful break in Cornwall, and I'll pray for some good weather for you! Lots of nice walks and relaxing for you my girl! Take care Sandie x |
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Hi folks: Long time. Hope all are well and recovering. I'm in my 5th month of lyme treatment. I just switched meds last week to go after Bartonella, a common co-infection with lyme. Overall I"m about 95+ %. I have a few, mild remaining symptoms. But all of the dizziness, anxiety, creaking / shore neck, chills, sweats, etc are gone. Those were all lyme and co-infections for me. I have met 4 other "labs" sufferers who really had lyme in the past month. None of them realized this until they went and got proper testing at my insistence. Guess what..they were positive and are making progress. One was from the UK. So..if you guys are still uncompensated and noticed a cyclical nature of your symptoms, particularly for women around that time of the month, then you should strongly consider a lyme test. Not saying all have it...but if you are uncompensated, have chills, sweats, a sore neck, anxiety, etc, there is a strong chance...even if you are in the UK or EU. You can get well once getting the infection under control. Cheers! B |
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Hi to all my wonderful Sharp Blue friends, Just to say am signing off until Monday week - we're off on holiday tomorrow. Weather looks mixed, but don't care, just need a break. My thoughts of course, will be with you all just hoping that I will return to some good news stories, but knowing only too well the pace of this thing and it's nature - I'm sure there will be ups and downs as has been the norm! Wishing you all nothing but happier and better days. Lots of love and hugs, Gloria xxx |
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Have a wonderful time Gloria, hope the weather improves for you and you see some improvement in your symptoms! Brad glad you are getting better. Greg your post was very interesting. I can identify with the way you feel about all this, I have been through and going through much the same. I haven't had all the head pressure and spinning vertigo attacks like you but I do have a constantly fuzzy off balance lightheaded feeling and phases of headaches along with fatigue and chronic neck pain. You beat it once so hopefully this time you will too! I too felt that my life changed overnight. It was a big shock to go from normal to this and I have pretty much been through the classic 7 stages of grief, ie shock, guilt, anger, depression, adjusting, reconstructing, acceptance/hope. Now I am just trying to focus on getting through each day and hoping for better things in the future. Today I have a headache so feel more lightheaded. Sometimes it seems that when the neck pain is worse the off balance feeling is a bit better and vice versa. Headaches however do make me feel more woozy. Melissa great to hear from you and so glad you are over labs! Amanda also lovely to hear from you. I have thought about you because if I remember we are a similar age and had similar symptoms. Did you get a proper diagnosis in the end? How are you coping with your job? have you improved at all... Everyone else, hope you are faring better xxx |
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Well im off on holiday tomorrow like Gloria hopefully have a good time im going to the beach, anyways that's the good news, the bad news is im beginning to lose hope that ill ever recover im at 10 1/2 months and Ive still got this devastating rocking vertigo feeling 24/7 and the problem is i don't feel like it is actually less then it was in November of last year when it first started so im worrying quite a bit, i wish more people would continue to post on here that they recovered 100% so i could be reassured that i wont feel like this forever |
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Hello Everyone, Happy Holiday Gloria hope you can enjoy it without too much interuption from our mutual 'friend' Mr Dizzy!! Firstly so many stories again all saying the same thing so why are we made to feel so useless when we visit anyone from the medical profession. Greg everything you have said sounds like me I have had this since late Jan started off moving my head in bed then wham hit with this horrible vertigo!! ahich turned into a head pressure, ear pressure, face pressure headachey dizzy hell!! 2010 has also been a right off for me. i was 40 in July & had all these plans last year of things to do & they are all on hold until I feel 'better'. feel for you, just remember your not alone it does help a little to know that. Jemma sorry your still feeling so bad. Its nice to hear from Melissa I hope some other 'success' stories post on here to give us all hope. I've been really off now for about 2 months seems worse at the moment than right at the start. I really thought things were improving in July :( Worked in a busy offive covering annual leave for the last 2 weeks. Very hard also juggling the children & home life too. Need to get back to the gym as that really helped me before the summer hols & work got in the way. Need to go in the morning as that is the only time I feel relatively 'normal' Anyway doom & gloom from me, dont like to dwell too much. Love to everyone else (too many to mention these days) Claire x |
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Hi All, welcome to all the new people on here and so sorry that you are all suffering from this horrible nightmare of an illness. Claire - I completely agree with you about the gym. For one reason or another I have not been going as often and only been going swimming when I get there too. I have noticed a big downturn in my symptoms and I am guessing its because of the inactivity. I have been doing my usual daily stuff but not the gym and am paying for it. So as from next week I am going to force myself to go. This shows me that exercise is the key to fix this thing we have. The turn your head dizziness is back - I went to the local co-op picked up a bottle of lemonaide, turned round and completely lost my balance. Luckily the isles are quite narrow so I didnt fall down but it scared the life out of me. On the whole I have had some good days, I find it really wierd that one moment you can be fine and then the next you get slammed or visa virsa. But I do think we learn to cope and just get on with things the best we can. Wierdly I went to the dentist in the week and had felt really off balance all morning and on walking there but after having the injection and a filling came out not dizzy .. strange. I would have thought it would have been the opposite. Jemma - sorry your not feeling the best at the moment, it is so hard to "keep the faith" with this thing being so up and down all the time. Glora - hope your having a lovely time, fingers crossed for good weather x Sandie/Stacy and everyone else - hope your all ok. Hugs Shirley xx |
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Hi Shirley, I def think I need to get back into the exercise I know thats what has made me improve before it all makes sense now. Even though I have been so busy last couple of weeks working & running around with the children, its not the same as the exercise. How wierd my head turning vertigo reared its ugly head about 10 days ago it seems to be subsiding a bit now always the same cycle of dizziness its really wierd. I also think the weather plays a big role in all this when its rainy low cloud I really feel the symptoms worse. Along with the 'hormones' its not a good time for us dizzies. I am off on a hen weekend on Friday going to Alton Towers (theme park)!!!! Goodness knows how I'm going to get on?? can only make the gym for 1 session this week as so many other things I need to do so the following week I intened to go every day! Hope everyone else has had a good weekend Love to all Claire x |
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Hi Shirley, I have been quite good the last week or so, not bad at all. I usually get a couple of good weeks every month and then it starts again with my cycle! That little turn you had in the shop is typical of this, it just comes from nowhere, I still have this happen to me even after all this time. You never get used to it and it scares the hell out of you every time. Funny that you should not be dizzy at your dental appointment - maybe you should get your teeth filled every day! Claire, are you mad, Alton Towers - wishing you loads of luck with that! Take care Sandie x |
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Hi all, I have been reading many of your comments and I now have hope that my labyrinthitis should evenually be gone, or at least gone enough that I can restart my life. My story is probably boringly familiar, but here it is. I was hit with severe dizziness and an overwhelming urge to be sick suddenly on 21st Dec 2009 whilst at my desk in work. The room was spinning and I was almost too afraid to move. By Christmas day I was in hospital hooked up to an ECG and my brain was telling me I was minutes from the pearly gates, but the doctor told me I was 'only' having a panic attack probably because of an inner ear infection. Due to the holidays I couldnt see my doctor for a few days and he diagnosed an outer ear bacterial infection that had probably migrated to the inner ear. For two months solid I had dizziness, sickness, although luckily I was never actually sick, pressure and stabbing pains in my left ear and sometimes a line of pain from my ear down my neck, over my collar bone and down into my chest, along with occasional tingly (like when a dead leg or arm is waking up) fingers, arm, or left side. For a 40 year old (now ex) smoker this part of it was a source of many bad 'attacks' to come. All if a sudden after a 3 day bout of severe ear pain in February all symptoms were gone, luckily for me a couple of days before going to New York, but after a trip up the Empire State Building and a walk to Times Square all symptoms were back worse than ever. Cue 2 days of thinking my time was up. On my return I got referred for an MRI and all was clear with my ear and neck. Fast forward and I am now into my 9th month. The constant dizziness stopped about 3 weeks ago and now I only get the occasional 30 second spell if I move too quickly or I am on my feet too long. I usually only feel sick if I move my head into certain positions. I feel better to the point where I have started to get back onto my feet again and force myself to walk about. I have managed to reach an hour walking about and only felt sick and a sort of 'something slightly wrong with reality' dizzy for about 20 minutes after it. I am reminding myself that stiff muscles are normal after 9 months of inactivity and that its not something else. A new symptom along with the now almost constant stabbing in my ear and back of my head is hearing my heart beat in my ear that usually happens when I climb stairs or move too quickly for too long. Its obviously comforting that my heart is still beating away, but its also disturbing to hear it along with the dizzy 'buzz' that sometimes accompanies each beat. I am hoping that this is only a transitional phase as the nerve tries to repair the damage. Along with the pain is the almost numb feeling down the side of my face that is sometimes only round my ear but sometimes all the side of my face to the point where I feel it in my back teeth and tongue. I also have some high frequency hearing loss and constant tinnitus, which was actually the confirmation the specialist used along with the MRI that it was labs. Boredom being stuck in the house most of the time is no fun, to the point where I am actually looking forward to the day I am able to go back to work. Keeping positive that it will eventually go away helps to keep the depression feelings away, as does keeping the mind active with hobbies. I find that keeping my mind active distracts me from some of the symptoms for a while and stops me thinking that this will never go - which I dont believe for a second. I WILL be well again..! I agree with the comments about caffeine making it worse. I have only recently been able to have the occasional coffee, with occasional being a couple of days between each one. Anyway, enough about me. I know my symptoms are not as bad as some I have read here, but I hope that my current improvement can give some hope to fellow sufferers that there is a light at the end of the tunnel. Regards Bob |
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Bob, welcome. Your symptoms mirror mine apart from the tinnitus, which is something I have not had. I do get the pulsing in my ear but I feel this is something to do with my neck as I only get it when the neck muscle at the side is painful. I have had this since 2 November 2009 and never, ever expected it to last this long. However, you do seem to get good days along with the bad days and I guess you just learn to cope. At the moment I am having bad days, it seems to stem from straining my neck by looking over my shoulder at something on my "bad ear" side. All of a sudden I came over dizzy and its just not gone. I really feel my neck is a major problem for me not compensating. You mentioned the numbness in your limbs and face - I have had that also. This can be very scary at times and its nice to hear how positive you are. Where do you come from Bob, are you in the UK or US? Claire - OMG Alton Towers !!! Sandie - I am struggling like you and Claire with my monthly cycle. I did read that it effects the fluid balance in your ears so maybe an over the counter water retention tablet might help. I'm going to go to boots tomorrow to get some. Its worth a try. Hugs Shirley x Hope everyones OK |
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Hello all I can't believe there are so many people out there suffering with Labyrinthitis!! I was first diagnosed in November 2006. I had a stiff neck and my head felt really spaced out, I feared I had a brain tumour! I have had it on and off since then. This Sunday just gone I walked my dog and when we got home after the walk I had a headache in the back of my head. It's now Thursday and whilst I don't have the headache at this moment I am totally spaced out, have sensitivity to light and noise, and I just have an "awareness" of the back of my head, which also sometimes feels hot at the back of my head throughout the day. It's been a bit stormy here over the last few days, I wonder if that could be bringing it on? It's really affecting my life as I love to go to the gym and walk my dog but I haven't dared do either these last four days as I feel my headache is waiting in the shadows and will return as soon as I exert myself even the slightest. Sigh. Anyway thanks for listening to my vent! Does anyone else get the headache on and off when they have a bout of labyrinthitis? Trying to rule out brain tumour again! ;] |
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Hello all I can't believe there are so many people out there suffering with Labyrinthitis!! I was first diagnosed in November 2006. I had a stiff neck and my head felt really spaced out, I feared I had a brain tumour! I have had it on and off since then. This Sunday just gone I walked my dog and when we got home after the walk I had a headache in the back of my head. It's now Thursday and whilst I don't have the headache at this moment I am totally spaced out, have sensitivity to light and noise, and I just have an "awareness" of the back of my head, which also sometimes feels hot at the back of my head throughout the day. It's been a bit stormy here over the last few days, I wonder if that could be bringing it on? It's really affecting my life as I love to go to the gym and walk my dog but I haven't dared do either these last four days as I feel my headache is waiting in the shadows and will return as soon as I exert myself even the slightest. Sigh. Anyway thanks for listening to my vent! Does anyone else get the headache on and off when they have a bout of labyrinthitis? Trying to rule out brain tumour again! ;] |
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Hello all Welcome Bob and Michelle, Bob all your symptoms are like listening to myself & many others on here. I have that heart beat noise too its freaky sometimes along with the dizzy buzzing!! I also get tingly pins & needles feeling only on my left side> M y Doctor has now referred me to see a Neurologist although I have had MRI already I suppose another opinion would be helpful> I am now 9 months into this too & am finding it hard to see the light at the end of the long dizzy tunnell. Michelle sorry you are suffering too have you actually had the symptoms since 2006 or does it come & go? The weather definitely affects me with low pressure days meaning dizzy headachey days. I had the whole brain tumour worry at the beginning too it really messed me up mentally I was very anxious but that has all gone now. i can reccommend you walk whenever possible as this will help your brain to compensate. I have been rubbish last few days maybe the weather cant blame the hormones at the moment. I am trying to do my VRT twice a day & going back to the gym. went shopping today & am so dizzy tonight also have a dreadful headache. I JUST WANT TO FEEL NORMAL AGAIN!!!!!! Sorry bad week. Shirley/Sandie lovely to hear from you I know I am mad going to Alton Towers but I am going as the official bag holder!!! Will take my sturgeron tomorrow as its a 3 + hour journey :( staying in a nice house for the weekend though with a hot tub! There are 8 of us girls going so hopefully should enjoy it even though I will be the sober one. Shirley I bought some Aqua Ban then i realised they have caffeine in so didnt take them (now in bin) I asked the doc about the fluid retention affecting my inner ear but he said the water tablets would just make me pee alot!!! & may make me dehydrated so wouldnt give me any. We will try anything though wont we maybe a spin on a rollercoaster might sort me out!! Love to all Claire x |
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Hey people! It is really good to finally find a site where people who are currently suffering with Labrynthitis are able to share their thoughts and worries! I was first diagnosed with it towards the end of May. After going to London on a flight, and returning the next day.. I stupidly flew down despite having a bad head cold! On my return I felt so rough and when in a meeting I took a weird dizzy spell whilst sitting down, I knew it wasn't a normal feeling! Went to my 'ever so understanding doctor'!!! Who mis-diagnosed 'hunger, low blood sugar, stress'... so I obidiently walked away, head hung low, told off.... to my bed for 2 days rest...! Come the weekend I could barely move my head without falling back down! Went to the out of hours docs who diagnosed lab... (I was super relieved to find out what it was!) I too worry about the brain tumour thing, but I dont suffer from head-aches or blurred vision etc. I do have some of the visual symptoms described a few pages back (when looking at patterns they wiggle! etc).. and these are usually worse when I feel more 'labrynthy'.. if you know what I mean! I first had it for 3 weeks officially! But went back to work too soon, so it re-occurred and I am only just back at work after another 3 weeks off. Feeling like it is always in the background..... lingring.. and I HATE IT! I have the 'fuzzy head' feeling a lot, especially after having a cold (last week!) and especialy if I havent had a lot of sleep. Anyway.. just wanted to say that I am sorry to hear some of you are really suffering. It is good to know we have somewhere to come to share our experiences, it is also good to know that we realy DO have somehting and we are not going mad! Lots of love and healthy wishes to you all. Nina xx |
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Hello everyone. I've been following all the old and new posts on this site, and can't help but agree with most of the symptoms that everyone has, it's so refreshing, but a bit disconcerting to find so many sufferers. I'm now just over 10 months into this latest attack, and although I do have good periods during the day, I'm still suffering every day with periods of off balance, swirly head, sometimes headache, exhaustion, nausea, ear pressure etc. I, like all of you, am looking for a cure and find everyone's tips helpful and have just started taking magnesium for the headaches, I'm also armed with a few questions for my doctor next week, and maybe after almost a month of waiting since seeing the neurologist I will be given the new drug for the migraine related vertigo. Claire, if the rollercoaster works we'll all be booking up, have fun anyway! Hope all those that are on holiday are having a good time and managing to be free from all the dizzy symptoms. Love to you all, take care Sue xx |
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Hey Niki
I don't think you're going crazy. Whilst I haven't experienced exactly what you describe, I have had a few bouts of hysteria with this. Uncontrollable laughter even though I'm not finding anything funny. I have also experienced extreme anxiety symptoms and depression with uncontrobllable crying. The shaking, heart racing, palpitations and feeling like you want to die - it is the worst feeling ever and for me I could do nothing to stop it. I just had to let this fear course through my body!
I think that because labs is linked to the vestibular system it can cause all these weird reactions. They are kind of like neurological symptoms and so scary. They seem to come and go with no rhyme or reason and freak you out. This is the reason I can never relax with this thing because you never know what is coming next.
I dont know if I will ever fully recover from this. On a psychological level it has totally messed up my head and on a physical level the dizziness is awful and very disconcerting to live with. I do believe and keep reminding myself that it will improve with time though and I keep trying to take each day as it comes.
Take care xx