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I'm so glad to have found this site. I won't bore you all with symptoms; we're all intimately familiar with those. Mine started in late July and I went for a week thinking I was dying before I finally went to my GP. My blood pressure was sky high--big surprise there, right?--and she put me on meds for that and chalked up my symptoms to that, too. I gotta tell ya, that wasn't encouraging at all. I have a strong family history of heart disease and I was sure I was on my way 'home'. I went to another local Dr. for the ordered blood tests a few days later, repeated my complaints, and she had them test for thyroid as well, and told me to see my dentist. This started after I ignored a toothache, so I really thought that might be the problem. As it turned out, my dentist was the most sympathetic and helpful of all of them. After the x rays and exam showed nothing, he said he knew someone who had Meniere's and what I had sounded kind of like that. I was still so dizzy when I went to see him that I didn't know if I'd be able to drive myself to his office, even though it was only about a mile away. I came home from his office in tears. I was thinking he was my last hope, and I sat down at the computer for lack of anything else to do, googled my symptoms, and BAM! The only, and I mean only, things that came up were sites for labs. Not stroke, not brain tumors, not mastoiditis, nothing but inner ear stuff. You guys have saved my life. I was so so scared, so discouraged, and I came here and found all of you, echoing the exact same bizarro symptoms, and offering sites with exercises and ways to cope, and just lots of hope. I surely do thank you all and I add you all into my daily prayers for healing and comfort and peace. I've been lurking for about three months now, and I seem to be in the middle of a small relapse after a fairly steady improvement. I'm also having weird tingling in my hands and feet that feel like they're asleep. I hate that! I also find that, while I try to get through the day and at least pretend to be normal, I still have no "want to". I'm still feeling that detachment that I had earlier. So uncomfortable, so disconcerting. I think the last post on here is a couple months old, but I'm still going to come back for encouragement when I start second guessing and feeling down and scared. Next to Jesus, you guys have gotten me this far and I hope I can be a blessing and encouragement to others. Thanks! |
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Rant on, Shirley! We're in the same boat this weekend. My husband and brother in law went camping in a spot so remote there's not even cell service, and my youngest son is at a school function out of town until late. I've been sleeping on the couch since this started almost three months ago because I was tossing all night and kind of rocking myself to sleep to override the uncomfortable sensations, and I didn't want to disturb my husband's sleep. I also haven't been lying flat even now. It's not as 'spinny' as in the beginning, it's just not quite comfortable yet. I'm going all hot too, and my fingers and legs feel weird; asleep and twitchy. My head and ear and down my neck aches and burns. One good thing, though, is I'm actually sort of hungry. I'm going to make myself a lovely piece of fish in the micro, heat up some veg, make a cup of herbal tea--this from a coffee fiend!-- and find a quiet, lack of action movie to watch. Another wasted day, but this will pass! Take care of yourself this evening, relax and don't worry. I'm here on the couch, too, all hot and woozy right along with ya. |
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Shirley, I am so sorry! Those backsliding episodes are soooo depressing! I have had many of them over the past two years. Your symptoms do sound like migraine though. A migraine affecting the part of your head that connects to the inner ear can cause those symptoms, including ear pain. So it should pass really soon. Take care of yourself and hopefully you have things that have worked for you in the past to relax you when you are going through a difficult period. Tina |
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Ellen I think what we have all learned on here is that the ENT docs and your GPs know absolutely zilch where labs is concerned. I was dismissed by my ENT doc as all my tests came back clear and he made me feel like I was making everything up. I guess on the outside I do look healthy but see me walk and I look like I've been on the vodka (oh I wish lol). Thank you so much for your kind words on facebook last night - they were much appreciated. I've woke up this morning feeling exactly the same but with the headache from hell. So today is going to be a day of rest, rest and more rest. Hope you are feeling much better this morning. Tina - you might be right about the migraine. I haven't really suffered myself but it does run in my family as my mum was a major sufferer. Hugs Shirley x |
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Shirley, I think that labs is a fairly stable condition and there will be some days you will feel better and days that you will feel a little worse, but it is kind of within the same range. If you get sudden attacks out of the blue that are not precipitated by movement, well then there is a good chance that a migraine component is also going on. I think you can have both, or even just migraine as it can mimic the symptoms of labyrinthitis. Most people still think of a migraine as just a bad headache, but it can have many different symptoms such as visual disturbance and dizziness. You may be able to control it with diet or you may need to add migraine-preventative meds. So I would go back to a doctor, but not an ENT, a neurologist who is familiar with migraines or better yet, a neurotologist, a balance disorder specialist. |
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Hi everyone, Well I surviced my hen weekend & Alton Towers!!! I managed 2 rides...........the monorail shuttle & cable car. I was the official bag holder for the day but was glas I managed to keep up with everyone traipsing miles to each ride. We hired a lovely house in Staffs. 7 girlies all mucking in and cooking etc really nice even decided to drink!!! after the first woozy glass the affects didnt get any worse so had 3 more!!! champagne too. Feel off today but had only a few hrs sleep & a 3 1/2 hour journey. Took Stugeron Which really helped on the journey. To be honest felt so bad lately that I decided the alcohol couldnt make me much worse & it didnt. Really glad I went as last week I was suffering so much I thought about cancelling. The good thing is as i just want to fit in with everyone else I almost feel normal until I sit quietly then the swirlies start. Shirley so sorry you have had such a bad weekend. The weather cant be helping much. i know that ambulance 'panic' feeling its horrible especially when you are alone. I had a strange turn in the dentists chair on Thurs. was only a consult & as the dentist was talking to me I came over all hot dizzy, sick & strange almost like a panic attack & all I kept thinking was 'its okay I am in a medical environment they will know what to do if I collapse'. Crazy the way it makes us feel. Just rest Shirley & take it easy. The only thing you can do. Rant all you like at least we all know exactly what you are talking about unlike the whole medical profession! Ellen, glad you found us hope it all helps you with your recovery :) Love to everyone else Claire |
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Poor you Shirley, like someone else said, at least we all can appreciate how bad you feel, as we've all been there and it's only when you start to feel better, that you realise how awful you've been feeling. I think you might be suffering migraine, it would be worth checking out. Claire, glad your weekend turned out well, you have given us all some hope - rides and alcohol! I have been given the name of my prescribed drugs - I get them tomorrow from the doctor, they are called Verapamil, not sure about them, have been reading into the side effects and am now quite worried, but I really want and need to feel well, so feel torn between taking the drugs and hopefully feel better, or not taking them and continue to feel awful! Love to you all Sue xx |
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Hi Everyone:) I've been reading this message board and reading all your stories for 3 months now. It certainly does make me feel a lot better that I'm not the only person out there going through this - although I'm sorry any of us are. I've been given a diagnosis of a variation of Meniere's disease by my neurologist, although I am on this site because I really don't relate to the symptoms of the people on the Meniere's sites. I'm sure the neurologist is probably right, but because my symptoms are labs symptoms (I haven't ever had acute spinning vertigo episodes or hearing loss) I feel a lot more in common with the people here. This all started for me just over 4 months ago. I'm an Aussie but I had been living in Galway, Ireland for the last 4 years. I decided to move back to Australia this year, and on the night of my farewell in Galway, after I got home and was sitting in bed, my ears started ringing really loudly. I had been strangely over anxious for about two weeks leading up to it, and I had been having brief moments of slight dizzy spells for about six months before, but a doc had told me sometimes crystals come loose in your ear, and I put the anxiety down to the massive change in my life that was coming up. I was a bit anxious about the ear ringing but figured it was just from the loud pub, and went to sleep. The next day it was still going, and hasn't stopped since. It freaked me out, I had severe anxiety to the point my mother had to come to Ireland and help me pack and come back to Oz. After about 5 weeks, I was back in Australia and I was feeling a lot calmer and had gotten used to the ringing, though I just didn't feel right. Then one night, BANG, I had a terrible headache at the back of my head and down my neck, everything went weird like I was tripping, my ears were hurting and really blocked, I had tingling down my arms to my fingers, I was dizzy, and the ground was moving like I was on a boat. I went to the hospital and they just told me I was having a panic attack. I WAS NOT having a panic attack, but they wouldn't believe me. All those symptoms have stayed for the last 3 months, and even got worse for a while. My eyes also went blurry after a few weeks and now for the first time, I have to wear glasses!! I went to see a psychiatrist (who had treated me 10 years earlier with anxiety). The psychiatrist said it was NOT anxiety, and sent me to a neurologist. The neurologist examined me, could find nothing wrong, and said it was anxiety. He called the psychiatrist in front of me, and my psychiatrist insisted he send me for tests. That day he sent me for a CT scan, and within a few more days I had an MRI, blood tests, hearing tests, and an ENG and caloric tests. I was so lucky I was back in Australia because it was all free, including the doctors fees. I know I would have had to wait forever in Ireland and probably pay through the nose for it, so at least that was a blessing. The ENG/caloric tests showed a slight problem with my left inner ear, even though I have stabbing pains in both ears, ringing in both ears, and they both feel very blocked. I then went to an ENT specialist, who said there was nothing wrong with me! My hearing is perfect, and he said the ENG variation is too slight to mean anything!! I was SOOO upset I started crying in his office.! He told me there was nothing he could do for me and sent me out the door.BASTARD. I then received a phone call from the neurologist who had sent me for the tests, and he apologised and said he now believed there was something wrong with me! He said it was slight, but he believed, based on my symptoms, it was a problem. Thank God! He put me on Serc, but after a month it did nothing. Still dizzy, still in pain, still weird and disconnected. Then he put me on an anti migraine drug called Sibelium. It isn't registered in Australia and he had to get special government permission to give it to me. I have absolutely no side effects so far, and I finally think I'm starting to get better. The dizziness isn't as bad as it was the first month, and the permanent headache is gone. Things are still a bit weird, like looking through a camera instead of it being real, but not as much, and not all the time. I actually thought the dizziness was gone two weeks ago, but since then I've had a setback and I'm back bobbing on that dizzy ocean. For those of you who haven't tried this drug for fear of the side effects, I just want to let you know, I generally feel EVERYTHING. I'm only 46kg and drugs effect me really strongly, but this one has been fine.I don't know if it's really working, or if Im just naturally healing myself, but the setback happened when I hadn't taken it for 4 days, so I actually think it is helping. I don't suffer from migraines normally, so I'm not sure why this drug is working, but the neuro said that it was good for people who had a variation of Meniere's (which is what he thinks this might be, although he said it can't really be known unless once I get better, it comes back again). Anyway, sorry for boring you with my story, I just thought maybe people could ask their doctors about Sibelium if they wanted. (I know it is registered and widely used in Europe and Asia). @Shirley, I understand how you feel. I've never been more scared, panicked, and miserable about my life and my future ever. I find it difficult just getting through each hour sometimes. I'm single, and unemployed and back at home trying to start a new life, and now I feel like my life is over and I'll be stuck dizzy and spaced out alone in my parents house for the rest of my life! Don't worry, you're not alone!!:) Ish x |
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By the way, I've been thinking of something that would be of use to everyone with any dizziness, no matter what the cause. If we now have cochlear implants for deafness, why can't we have vestibular implants for dizziness? I'm sure it would be technologically possible to create a chip that senses motion and spatial location and can transmit that information like a cochlear implant does (not that I know how a cochlear implant works). But it surely can't be harder than any other recent technological feats?! And there would be a hell of a lot of people willing to get one! @Richard, judging from your bio on the home page, you seem like you would be entirely capable of such a feat!! Go on Richard, invent a cure for us!;) I'd do it myself but I'm a writer, not a physicist/engineer/computer wizz... Ish [Unfortunately, I’m useless with electronics and biology, two things that seem like they might be quite important to the project… — Rich] |
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Hi everyone Just a couple of questions that I'm sure you'll be able to help me out with: a) How long should you take Stemetil for? b) Can the heavy/ burning ears syndrome be treated? My ears have been out of sorts since I came down with labs almost 7 weeks ago and I really don't know what to do (or take) to make the heaviness go away.....it's also accompanied at times with a numbness in my face, particularly around the nose area. Hope you're all feeling much better and thinking and empathising with you all! Love, Bridie xx |
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Ish, Welcome to the site I was like you & read lots of posts before I actually felt brave enough to add my bit. Your story is very interesting & you seem to have had a sympathetic neurologist (eventually). I think every single one of us has been fobbed off at some time with 'anxiety' it is part of the condition but hardly surprising considering we are literally banging our dizzy heads against a brick wall. I really hope you are on the mend & feel like you can get your life back on track. Being able to lead a normal life as possible is very important in the coping & getting over this horrible condition its very hard sometimes to stay positive but we really musnt let it beat us!!! Bridie I was told that if I could stay off the serc/stemetil then it would help the brain to compensate as the use of too much anti dizzy can slow down the healing process. i took beta histine for about a month then just stopped taking anything except travel sickness tablets for car journeys. I have wierd feelings in my head & face including tightness heaviness in the bridge of my nose. Its all part of how it affects us & I wish I knew something to tell you that would help but I've had this almost 9 months & I'm still searching! Claire |
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A good description of Migraine Associated Vertigo in this online technical textbook. Important to show to the disbelieving doctors http://books.google.com/books?id=sGhzMnst1j8C&printsec=frontcover&dq=ballenger's+otorhinolaryngology+head+and+neck+surgery&source=bl&ots=hAEUjUrpj6&sig=zsIg8WOhNqWkcrUU1WY1DeU-cbY&hl=en&ei=3IaqTL2dAor0swPZ3PzDAw&sa=X&oi=book_result&ct=result&resnum=4&ved=0CCkQ6AEwAw#v=onepage&q&f=false
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There are also good descriptions of Meniere's, BPPV, and VN. The MAV one is on page 318. |
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Hi all, Back after a most wonderful weeks holiday! We were really lucky with the weather, the cottage we stayed in was fab and had views to die for. The thumbnail attached shows the view from our bedroom which had a lovely balcony. Getting up in the morning and sitting out on the balcony with a cup of tea first thing was the best tonic ever. I just didn't want to come back. I felt not too bad - I'm am quite sure the change of scenery and the fact you have other things to think of, do take your mind off how you feel. That said, of course my time was not symptom free - will that day ever arrive. Can I say hi and welcome to all the new folk - I absolutely can empathise with you all. Sue - will be glad to hear how you get on with the Verapamil (and you too Ish with the Sibelium). I'm to go back and see the neuro in November who will no doubt want to try another migraine med. I'm still not totally convinced about the migraine stuff. Yes, I am a migraine sufferer, but there is no way that what I have been through since last June is totally migraine. Sure, it doesn't help. Also, since I have been taking the magnesium supplements, that has helped a little and my head doesn't feel so tight. But, here I am back from holiday and have had the migraine from hell since yesterday. Glad it didn't occur whilst on holiday though - even had a glass of bubbly to celebrate our wedding anniversary! We also did tons of hill walking so the exercise thing is also key. Anyway, sorry Shirley/Claire to hear you are feeling yuk. It is so unfair, just when you get a little glimmer of hope. Claire - I'm with you on to hell with it all and just go ahead and enjoy - you feel rubbish anyway! Glad you had a good week-end. Whilst, I'm still lightheaded, I am not nearly as dizzy, but it is just the ear stuff, tightness in the head, headaches. For those suffering sweats and nausea - I had that big time - after 15 months it is loads better and now I get a little sweat, usually in the night - so hold on in there. Bridie - I have tried everything for the same symptoms you describe. Thinking I have had the worst of ear infections, but the ENT person I saw the other week said it was all down to nerve damage in the ear. Hopefully, nerve damage eventually repairs itself. Try not to take Stemetil unless you really have to. It stops any compensation of balance. Keep strong. Can't believe we're on Page 13 - oh well - could be lucky for all of us - you never know!! Lovely to hear from you all. Love & hugs, Gloria xx |
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This little poem I found on holiday and want to send it's sentiments to everyone. When things go wrong as they sometimes will, When the road you're trudging seems all up hill, When the funds are low and the debts are high, You want to smile but have to sigh, When things are pressing you down a bit, Rest, if you must, but DON'T you quit. Life is strange with its twists and turns, As everyone of us sometimes learns, And many a failure turns about when he might have won had he stuck it out. Don't give up though the pace seems slow, You may succeed with another blow. Success is failure turned inside out, The silver tint of the clouds of doubt. You can never tell how close you are, It may be near when it seems so far, So stick to the fight when you're hardest hit, It's when things seem worse that you must NOT QUIT. Love, Gloria xx |
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Hi folks Thanks Claire and Gloria for your advice - I kind of thought the ears thing was nerve damage as my GP checked my ears a few days ago and didnt find any infection. It's so reassuring to have this site and to know that others are going through the same and feel your pain! Gloria, thanks for posting the poem - I think it epitomizes what we're all going through! I'm glad you had a lovely holiday. Dear Ish, I really feel for you, at one point a few months ago, I felt exactly the same way! Now I can actually go into a supermarket without feeling like I'm about to keel over and I even managed a concert last weekend!I'm thinking of you. Will sign off here and best wishes to all. Bridie xx |
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Yeah, today after doing way too much yesterday I feel yuck again. I keep thinking back to the total disability of the first couple of weeks, though, and see how very far from that I remain. Keep thinking that, all; we're not where we will be, but we're not where we were! Gloria, I've made a list to go with your poem. It's called " All the Things I Like About Inner Ear Disorders"... ...Um, yeah. All done. :D |
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Hi everyone Welcome to all the newbies! I too can really empathise with all you are going through and the struggle with the doctors. I did not realise at the time that this is pretty standard to experience next to no help from the medical profession with this condition. I thought it was just me and I came away from nearly every appointment in tears convinced I would be dizzy forever and never have any answers. Getting some kind of diagnosis from a neurologist after 9 months and finding this site are the main things that have kept me going and reassured me that things improve. Ish I really understand what you are feeling. I felt like my life was over for a long time but now due to the healing of time, acceptance of my condition, a semi-diagnosis and improvement (albeit slow) in my condition has given me hope. I have been lucky enough to be able to stop work and take some time to recover and I now find that whilst still suffering symtpoms I can live my life day to day and largely I am happy. I do get frustrated at times and scared occasionally and I am limited to things I can do, things I can do with a struggle and things I still would not attempt. Hang in there, one thing this has taught me is that life goes on, things change and you will not stay the same forever... Gloria so glad you had a good holiday. Did you say your god daughters wedding is coming up soon. Are you feeling confident about it? Thanks for the poem, it brought a tear to my eye! I have been reasonable this week, I seem to go through a week or two of feeling a bit better then another few weeks of feeling worse again. It's like a cycle but I dont know what influences it. My neck is starting to hurt again after a week of relief, why i still dont really know. Tina thanks for posting all the medical info, you know more than the doctors? Did you say you have had this 2 years? Have you improved and how do you manage your day? Are you ever symptom free? Everyone else Claire, Shirely, Ellen, Bridie hope you are seeing better days? Take care Jemma xx |
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Jemma, I think that we as patients have an advantage over the doctors in that we have the time and the motivation to focus and search out info on our particular ailment. They have to be current on many different fields and so may not be reading up specifically on balance disorders. Unfortunately, rather than admitting that they haven't looked at a medical book describing balance disorders since the 1980s, they blame our symptoms on anxiety! LOL The link I sent was of a very recent textbook that probably most practicing doctors have not read. I have had this condition for two years; it began intermittently with what looked like BPPV and then became a full blown attack in January 2009. It has slowly improved since that attack, but I am still very far from normal. The only time I feel normal is when I am sitting and haven't moved very much. Though I can also get really bad false motion while sitting. It depends on what I have done already that day. I think what hinders my compensation is that I have a migraine overlay. While I have the constant off feeling, I can suddenly get worse due to rapid air pressure changes or today I got worse because I was reading aloud for about 45 minutes to students. (I work at a high school) The tracking increased my blurred vision, dizziness, slightly headachey, heavy headedness and feeling of motion sickness that just stayed with me for the rest of the day. It's kind of the same feeling I would get pre-labs, if I were a passenger on a long trip with windy roads. But worse. How I manage my day, is to go to work and try to ignore it as best I can. Distraction seems to be the key, but some days I just come home and sob, because I am so tired of feeling like this. I am lucky that my job is very close to my house, only 9 blocks away. When I am more dizzy, my neck gets very uncomfortable, because of trying to hold my head still. It's also from tension, being angry that I have this condition and maybe some of it is also from the migraine phenomenon going on in my head. |
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Hi all, Too boring to say how I'm feeling, same old same old. Just a quick one today has anyone tried or thought about trying power balance bands (google it) just wondered if i should waste �29.95 on a possible (but unlikely) cure?? Neurologist on Wednesday next week, not holding out too much hope! Claire [That’s not even an unlikely cure, just a way to extract money from desperate or gullible people — Rich] |
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Jemma, Sandie and others: I keep noticing you all talking about the "waxing and waning" of your symptoms which include dizziness, spaciness, brain fog, SORE NECK, ear fullness, etc, etc, etc. OK..broken record I know...but these are classic LYME symptoms. Lyme can cause Labyrinthitis (latest research from John Hopkins University.) Please please consider finding an LLMD (Lyme Literate MD) in your area to get a PROPER lyme test or at least to rule it out and tell me to buzz off! ;) I have now helped 5 people get properly diagnosed when they were told (some for years) that they had Labyrinthitis, Meniere's, Fibromyalgia, and / or Chronic Fatigue. Lyme is in all 50 states and throughout Europe. Most lyme patients really have lyme plus 1-3 other "co-infections" (usually Bartonella and Babesia). I have lyme and "Bart" but also suspect "Babs". Symptoms for all 3 are below. Check off how many you have. If it is more than 10, then strongly suspect lyme & co is at the ROOT of your Labs / other problems. 3 weeks of antibiotics won't cure this. You need agressive, long term treatment. I'm in my 5th month and am almost 100%. I've met others who had to treat for 1-2 years, but they beat it! I had more than 50 symptoms at my worst (around the time I posted here for the first time.) Today I have 3-4! See how many you have!! Watch the trailer for "Under our Skin" at www.underourskin.com or on youtube (more trailers there.) It explains the Lyme epidemic / controversy in the USA and EU. Symptoms are: 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 39. Symptoms wax / wane / flare in approximate 4 week cycles Bartonella Symptoms: ___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 Babesia 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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Thanks Rich I think you are definitely right I will save the 29.95 & treat myself to something nice instead that will make me feel much better!!! :) |
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Hi all Claire good luck at the neurologist. I got a few answers when I saw one so fingers crossed you will too! Just wanted to respond to Brad and the Lyme disease theory and btw glad you are improving Brad. I am not sure if we have any LLMDs in the UK - has anyone uk based on here had the tests? I don't think it is as prevalent here as it is in the USA however I do know it exists as I remember someone I vaguely knew having it a while ago. I have looked into it again and whilst I do fit some of the symptoms on the list, there are so many on there it could relate to many conditions. Also I dont have enough of the possible symptoms to make me think it is Lyme. The main symptoms I had/have are: - initial severe anxiety as the dizziness started - anxiety turned into depression and weepiness which subsided within the first year - constant off balance feelings - fatigue - more recently episodes of a painful, achey neck - crunching sounds in ears, mainly the left and occasional fullness, noises and fluid feelings Whilst these do appear to the list for Lyme they are also all symptoms of vestibular disorder. The other thing is that I have had two blood tests at the GP and was told there was no sign of infections, no abnormality in the blood count/cells/antibodies and no sign of inflammation or arthritis which according to wikipedia is one of the main things the doctors would look for to diagnose Lyme. I also never had a rash which is another key thing they look for and I am not really an outdoorsy person although I accept that may not matter. The final thing I wonder is that if I did have Lyme and it had remained untreated all this time (nearly 18 months now) would I not be getting worse? Overall I would say I have slowly improved so would this not go against it being Lyme which I thought is progressive unless treated with antibiotics... Brad please don't think I am dismissing all you say because I am not. I just wanted to put my queries out there. If the testing was freely available in the UK I would have it to rule out Lyme because with this you never feel 100% sure what is wrong so thanks for opening our minds to the possibilities. Take care everyone. Jemma xxx |
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Hi Jemma: Thanks for the note. Here is what I have learned. -Some people have lyme in their system for years and have no symptoms. It "comes out" during a time of stress or when the body is worn down. -Just because you've been like this for 18 months and haven't gotten worse doesn't mean anything. Some people plateau with lyme. Your body could be keeping what you have at bay. -Re symptoms..yes, they are very non-specific and could be related to many things. That is the difficulty with properly diagnosing lyme & co as the diagnostic tests miss 70% of the lyme cases (only 30% sensitivity) and therefore people are told they have stress, it is 'in their head', or else they have labs, meneires, etc. -The fact that you have dizziness, anxiety, fatiue, ACHY NECK (the big clue) and also ear noises confirm that. I never had joint pain, bells palsy or a big rash as the textbooks say you have to have. You are correct...you may not have it. But what if you do? Wouldn't you want to at least rule it out? 18 months of uncompensated labs IS NOT NORMAL. Here is what I recommend if you want to rule it out. -Find an LLMD (Lyme Literate MD) in your area, ideally one trained by ILADS. There are a few in the UK as lyme is prevalent there (contrary to what many think.) You can find an LLMD by contacting www.ilads.org, www.lymediseaseassocation.org, or www.lymenet.org (flash discussions - seeking a doctor.) -Have this LLMD give you an IGENEX Western Blot for lyme. Also get tested for co-infections (Bart, Babs). Only the Igenex test is accurate enough. It is 70% sensitive (but still can miss 30%.) DO NOT get the "standard" lyme test offered by the UK Health system..they are totally worthless. -Get a Brain Spect scan and CD-57 test (from Labcorp). These two tests can help confirm lyme. Spects are usually abnormal with disseminated lyme (mine was.) CD-57's are usually low. This test measures the level of "Natural Killer Cells" in your blood stream / immune system. Normal is >200. Bad lyme is -DO NOT DO STERIODS or else you will go down hill. They suppress the immune system and let the bugs take over. -If you don't test positive, or don't want to do tests, why not try a trial (2-3 months) of strong antibiotics? Problem is you need an LLMD to prescribe the right combination (to attack all 3 forms of lyme) and the right dosage (most regular doctors give too low a dose.) I was on 400mg of Doxycycline and 1000mg of Flagyl at the beginning. If you do all this and you still are unwell, then you probably don't have it. I know..it sounds like a lot. Perhaps just start with the Igenex test. (www.igenex.com) They can send you a free test kit and you can ship them a sample for testing. You just need to get your blood drawn and spun. If you don't have it, at least you will be sure and you can focus on labs. If you do have it, then you can focus on killing the beast. Or you can just ignore me. I don't think you are being insensitive :) I just am trying to spread the word as I have met folks who have been miserable...some for 5, 10, or even 20 YEARS!!! because they were told it was stress, or given some bogus diagnosis like "Fibromyalgia" or "Chronic Fatigue Syndrome" when lyme was really at the root of it. Again...I feel I had labs too. Bue the root / cause of my Labs was lyme. I'm always eager to answer any questions. |
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I was on a site called Donna's Garden for an entirely different reason and I got to browsing, Look what I found as uses for St. John's Wort: "Depression, mild to moderate, or melancholia (moodiness). St. John's Wort is a nerve food; for nerve pain from peripheral neuropathies or secondary to trauma, spinal or head injuries. It regenerates nerves. Profoundly antiviral. Externally, it is a wound herb, especially good for burns." I happen to have some in my cabinet. I can't see any harm, so I'm gonna try it. Anybody else used this? |
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hi all, Brad - so pleased you are coming out of this and found the reason why you were unwell. For me, I think I said some months back, when I went to see a private neurologist, the first thing he did was a very comprehensive, and expensive blood test for a whole bunch of things ( 2 pages of lists of various tests) including Lyme - all negative. In a way, I wish something more positive did come out of it that could be identified precisely and there were tablets like antibiotics to cure it. With this it is a waiting game whilst it goes through a whole raft of symptoms. As Jemma said, looking back from the start I can see progression, but it is progression with horrible symptoms all along the way - not much respite. You think you are over one stage and then something else takes its place. So frustrating. Jemma - thank you for your response - my god-daughter's wedding is in 3 Saturdays time! Like you I have had a reasonable week or so. Back from holiday this week and feel not good again. So as you say, time to slide down the old snake again! Migraine from hell - been 3 days now! So, really hope this clears in time for all the madness of the wedding week-end including the wedding and party afterwards - can I face all that disco music?!! I used to be the first up on the dance floor for a bit of a boogie! Claire - wish you well with the neurologist. Will be very interested to hear what advice you are given or medication to take. Do you get many headaches or odd head pains with yours? I'm sure my neurologist will put me back on Amitriptyline. Whilst i feel I could do with something to dampen all this down - I think I have come this far without, should I succumb now? Tina - I admire you greatly for carrying on with this and working. Teaching is stressful at the best of times. Are you not tempted to try any medication at all or are you just hoping it will give up the ghost one day? Have you always been a migraine sufferer anyway and what pain medication do you take when it is bad? Shirley - how are you? Hope you are coming out of your relapse. Send hugs oxox. Sue/Ish - how is the medication going? As you may gather I think I may have to relent and try something. Hope your days are brighter. S - if you are back from your holiday - I hope it did you good and you feel a little better - maybe not so swirly headed. To everyone else and my other regular pals Sandie and Gary - hope you are doing OK. Love, Gloria xx |
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Hi Gloria, No, I am not yet ready to take any migraine meds, though some days I am tempted. I just diagnosed myself with MAV and the neurologist agreed, so I am just guessing that I have VN and migraine as an addition. I never had classic migraines before, and never needed to take a pain med. Even now I don't. With this condition I have now, I get head pressure and headaches, but the headaches are very mild and I barely notice them. They were somewhat worse earlier on in my labs journey, but maybe it's my diet and magnesium that helps with that. My only tip-off to the possibility of a migraine gene was that my two daughters had menstrual migraines once and noticing that I had a tendency towards motion sickness and I had gotten BPPV twice before. BPPV and motion sickness are more common in people with migraine tendencies. And I also read recently that people can develop migraines from the stress of having labs! |
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As for Brad's post, I am also glad that you found something that is working for you. I too believe that a lot of disorders like CFS etc. with their unpleasant symptoms might actually be your body fighting off a fungus or bacteria that conventional western medicine does not yet have the capability to test for. |
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Hello Everyone, Gloria nice to have you back glad you had a good holiday & managed to make the most of it (its all we can do). Sorry you are thinking of going back to amitriptyline, you must be suffering so if its what you think you need then its worth a try maybe set yourself a time goal & if you havent improved by that time then you really have nothing to lose. I am going to fight my neurologist if he even suggests this for me as I didnt get on well with them but everyone is different. i just think I am super sensitive to any meds & always seem to get all the side affects!! Good luck with your wedding. i have one in 2 saturdays timelooking forward to it but have already worked out it is near my 'time of the month'- positive thinking!!! :) Jemma I will let you know how it goes with the neurosurgeon although I have already decided it may be pointless. Hope you are okay :) Met an old friend at the gym the other day who has been suffering with Meneieres for 2 years. lots of similarities in our condition & was nice to speak to someone in person about our symptoms. Even saw her again today & had a conversation together on the treadmil before I knew it i had burned 150 calories- result!!! I have decided to get back my positive attituds as its been hard the last few months. I will be doing my VRT 2x a day every day & continue with my exercising. I will be beat this thing & I will feel 100% again..........Please feel free to remind me of that again the next time I am having a moan on here. Hope all the other posters on here (so many to mention now) are seeing some improvements. I, like Gloria & Jemma said am slowly better than when this all started 9+ months ago & have to remind myself of that on a daily basis Keep smiling :) Claire xx |
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Hi Claire I just wanted to ask you, are you seeing an NHS or private neurologist and did you ask to be referred by your GP. I recall you saying a while ago that your caloric test showed up a problem with one of your ears? Did they diagnose VN? Jemma xx |
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Hi Jemma, Its NHS I had the caloric tests etc privately & he just said thet there was 18% damage to my right ear? Is that VN? My GP referred me without me asking because I mentioned the shaky legs I'd been getting mainly on the left side. I think he wanted to make sure there was nothing else going on. Claire x |
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Dear all, I thought I'd reply to some of your posts. I'm 3 days into my new tablets "verapamil". It's a bit early to tell yet whether they're working or not, although I had the worst headache yesterday. It worries me when I look too much into what they are actually supposed to be used for and all the side effects -well there are quite a few including dizziness - just what I need! I do agree with you, Claire, exercise does help, but sometimes it's the last thing you want to do. I'm still trying to get the doctor to refer me for VRT, but she wasn't sure if she needed to refer me or whether I could just turn up at physio or she did mention a handout which I didn't manage to get! - oh doctors, they really are something else. I looked at the Lymes info but decided that I probably haven't got that, as I have had months symptom free, just going on for longer this time - unfortunately! Shirley, I hope you are feeling better, you are like me - very up and down and like every one else it's so upsetting and depressing when we have a set back, but isn't it great when you actually stop and think "I haven't felt dizzy today". I am still having my Bowen Technique and today had a Hoppi candle - very relaxing and also feel really good so far, whether its going to work on a long term basis, who knows, but I've felt good so far today! Best wishes to you all, Sue xxx |
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Claire, yeh I thought I remembered you saying about the caloric showing something but you read so many peoples' stories you get mixed up. It's interesting your left side has been affected because I have always felt that my right side has been more affected, leg, eye etc but I am sure the problem is with my left ear. I reckon that is because I recall reading that the ear passages its messages to the opposite side of the brain. This would kind of explain it. Perhaps the neurologist will do an MRI brain scan or some blood tests if you push them just to rule out anything else... This last week my ears have been really crackly again. Sort of like fluid behind the eardrum. They were like this last year. I dont know whether it is the time of year or some sort of mild infection. I dont know but of course you worry it could be going worse again. Fingers crossed it isnt! xx |
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Hi all, Just got our computer back up again. It crashed totally. Thank goodness we had everything backed up. Anyway, my hubby who clearly understands these things a lot lot more than I do has got it to work again. Phew! After the migraine from hell at the beginning of the week, felt a bit better on Friday and the week-end, although we had friends over for dinner on Saturday (7) I was rushing around like a headless chicken cooking etc. Not the thing to do really. Anyway, this week have really got to chill and keep calm - wedding week next week! So will not want to make anything erupt big time! My neck and shoulder muscles are really tight and sore though - Jemma you experiencing the same? My ear was playing up too for the last few weeks as well! I read the same about the opposite side receives the messages from the brain which is usually opposite to the affected side (does that make sense?). It is my left ear but I had all the tingling and stuff in my right leg. Jemma - how are you coping with your days now? Are you bored at home yet? I am, but just don't know what to commit myself to as I don't think I could take on the responsibility of agreeing to work even a few hours a week still! I''m still so up and down. I have been doing some power walking everyday and yesterday was beautiful here so we drove and did some rambling hill walks - both of us can't walk today, (such sore muscles) but exercise does seem to help this condition. Sue - do keep on letting us know how those tablets are helping or not and any any effects you have with them - I'd be really grateful for some info, but glad you are feeling brighter - long may it last. Claire - go girl! I have to do the same and lecture myself to be more proactive and positive! It is soooooo difficult at times especially during a bad blip. What new VRT have you got to do or are they same as you posted before? I am totally bored with mine and not sure if they have an impact any more. Is your wedding you are going to this Saturday? You enjoyed your Alton Towers week-end - take the old Stugeron or anything to help you enjoy your day. I shall be doing that for sure. Good luck Wednesday and of course let us know how things go. xx Gary - if you're looking in - how is college going and are you managing OK? Hope everyone is on an upward trend. Take care, Love, Gloria xx
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Hi guys It's good to see that you are all trying to stay positive. I really up and down at the minute. I find myself crying most days; I just can't help it! Am I ever going to feel normal and well again? :-( Anyway 2 weeks ago I went to see my new consultant and I'm glad I did. He seemed more knowledgeable then any of the others I have seen. He actually said that VN is just a symptom. It means nerve damage but what has caused that needs to be resolved. He ordered another MRI and a hearing test. I get the results on Saturday when I see him again. He was actually disgusted that I have paid to see several other consultants and not one has ordered an hearing test!! He also carried out a test that instantly ruled out bbpv, which is what the neurologist diagnosed, and laughed when I said the other neuro diagnosed MAV and perscribed topamax! He was saying that we have these sacs behind our ears and if they are damaged fluid gets inti them and causes dizziness, vertigo etc. He said this is why women have more problems around the time of the month because we retain more fluid in our bodies. He said a hormone imbalance can also cause this. Anyway he is experimenting and as taken me off birth control. I don't like to temp fate but I think he may be onto something!! The other thing he wants to rule out is meneires. I thought this only happened in episodes though? Not 24/7? I'm going to discuss this more with him on Saturday. It may lead to another dead end but I'm trying to be hopeful :-) one thing I have been experiencing lately is a numb feeling down my right side when my balance is off. Does anyone else get this? Love to you all Ash xx |
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I think I might have labrynthitis. My symptoms started about six weeks ago. Started with dizziness and headaches. I sometimes feel pressure in my ear (usually the right one). My dizziness is more one the right side of my head and I experience dizziness over right eye and eye strain. Is it normal to experience eye strain (I do not have the rapid eye movement that some people have talked about - just dizziness and strain). I have almost fainted twice. Had a CT scan done of head and it was normal. Will be having and ENG done soon. These are very scarey symptoms and sometimes I cannot even function. It's all I want to do is lay down. Can anyone out there let me know if they have similar symptoms (especially the eye strain symptom which I find weird). Thanks in advance. |
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Hi All Thought I'd continue with the positive as I know it really helps to read good as well as bad. I have been feeling much improved in the last week. Almost how I was back in the summer when I thought it was all getting better. I have definitely had a bad 3 months so really have noticed the improvement more because of the blip. I have upped the anti on the VRT & Exercise. Managing 2-3 miles on the treadmill now plus other gym stuff. I am doing my VRT 2x aday & have for a week now. As I am writing this I feel the old swirly feeling but I am only really getting it now later in the evening. Which means I am more or less symptom free for most of the day. I realise I could be setting myself up for a fall by sharing this with you but I know we all need to hear about the positive stuff too!! Fingers crossed I may be climbing up a ladder again :) Gloria, The wedding is Sat 23rd so really hope I can enjoy that day (all day). Well done with the walking, must be working as you look lovely on your profile photo. i read the other day that regular exercise can add ten years to your life so I am in it for the long haul. Jemma hope your okay I also get thet wierd full feeling in the ears its horrible & makes me feel worse & headachey. Hope you are improving a little :) Ash I am so glad you have seen someone with a little more knowledge. Its good to get all the tests to at least rule things out. I often wonder about menieres but I dont get the drop attacks of vertigo that goes with it & my hearing test was okay. I have had wierd feelings of numbnes, pins & needles always on my left side thats why my doctor has now referred me to the neurologist but I just think its all part of this horrible condition, try not to worry & mention it to the consultant. I also suffer more before & during my period. The funny thing is my doctor suggested I go on the pill (I'm 40!!) & yours is taking you off!!! I'll let you know how my neurology appt goes. Anonymous Sorry you have had to go in search but glad you found us :) It sounds to me very much like Labs symptoms. One of my main symptoms at the start (10 months ago) was eye strain & it lasted a while sometimes was really hard to focus properly. It was all very scary at the beginning & like everyone here I struggled for the first few months, didnt go out,lost weight huge anxiety but once you know what it is its just a case of coping as well as you can & trying to keep active as it really helps even though you dont feel like it. I had MRI, caloric & ENG tests just showed up damage to the right side (although my left feels wierder)& was given VRT which I think helps although dificult to know for sure. Anyway try to stay positive & you have come to the right place for answers Tina, Shirley,Gary, Sue, Ellen Bridie & everyone else hope you are all okay Claire xx |
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Tina, Shirley, Gary, Sue, Ellen, Thanks so much for responding. It's nice to hear from people who understand. I think my husband thinks I'm just making it all up. I wish that were true. My symptoms get better at night which makes me want to stay up all night and enjoy feeling normal for a while. Will keep you posted on the outcome. Thanks so much!! |
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Hi everyone Claire so glad you are improving it must be such a relief! Ash i was interested in what your consultant said about the fluid sacs behind the ears. I have always felt there has been some sort of fluid thing with me because my ears feel like there is fluid behind the drum and crackle. Also my MRI scan showed fluid traces in the mastoid air cells. Keep us posted on your results. Gloria in answer to your questions, my neck seems to flare up for a few weeks, then it settles a bit then goes worse again for no apparent reason. I seem to have phases of headaches then they go away for a while. I cope with my days and I am relieved not to have to go to work because like you i just cannot cope with the demands of work day after day. I find that I need to take regular rest to maintain some energy levels otherwise i just crash. When i was working I had to lie down all evening to recover and by the next morning i was still exhausted. Then it started all over again. Is fatigue a big part of this for you Gloria? Ellen, Ish, Shirley and everyone else, hope you are ok? Sandie if you are there, are you feeling prepared for your son's wedding? Take care xxx |
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Hello Thought I'd just update you all on my trip to the neurologist today. Very nice chap first of all which helped, quite understanding too. Anyway he thinks it is MAV (migraine induced vertigo). Alot of my symptoms are worse when i am close to my period. He suggested this to be quite common with my age group & as i have always been a headachey kind of person who suffered full on debilitating migraines as a 'hormonal' teenager. It seems the only medication available is amitriptyline, anti epilepsy, beta blockers & lots of other scary side effect drugs! Think I would rather cope with the dizzy/headaches :(. Makes me wonder where the inner ear connection is too, its all a bit confusing. ENT says one thing Neuro says another. Anyway he is going to access my MRI which was done privately so will let me know if anything shows up or if he thinks I may need another scan. So there you go another confusing slightly frustrating day in the life of a Labs/MAV/BPPV???? sufferer. Claire x
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Lovely to hear from you all again, this site has proved much more useful in the months that I've been looking in on it, than the last 4 1/2 years of health care professionals. I'm still waiting to hear if and when I can start VRT; everything seems to take so long to organise here in cornwall. Gloria, you asked if the new tablets were going well - sorry to say no miracles yet, still have bad days, but did feel worse last week as I had 2 days tablet-free, due to change over of drugs. Ash, I too get very full crackly ears so was really interested to hear what you were told recently by the neurologist, it sounds very logical and I will be interested to hear the outcome, you never know it might be the hope of a cure we've all been waiting for. Anonymous, I can quite sympathise with you. I also think people think I'm making this up sometimes, or they glibbly say "oh yes I had dizziness once - it lasted for about a week"! Jenna, I too get an achy neck and shoulder, and have been told in the past it's the way I hold myself when I'm off-balance. I've thought for a long time there's a connection between the off-balance and the neck pain. Claire, you sound like you had a very bewildering time at your latest appointment. I sometimes come away from these appointments wondering what I've been told and what it all actually means, then I feel cross with myself as I don't think I've asked the right questions or got any answers. That said, we should be experts soon! Well that's my rant over, looking forward to a "dizzy"-free time, for all of us. Sue x |
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Hi all, Without our main computer now - it has totally given up the ghost so hubby and I are fighting over this lap-top!! Not feeling good - was so dizzy the other couple of nights. Well, explanation is I have a horrible kidney/urine infection - really feel yuk. At least I know why I feel worse again. Thankfully, it is this week an not next. My god-daughter's wedding os on the 23rd like your wedding you are going to Claire. I'm getting myself a bit worked up just hoping and praying I will be OK. Claire - I knew that is what you would be told. Unless people have something that is glaringly different, the process of a diagnosis seems to go along the same lines for all of us. Not got over labs within a certain time frame, and you have been, as you say, headachy - then it is MAV with medication as the only solution! If we didn't have labs we would all be carrying on as we were, suffering the odd headaches or migraine but otherwise felt normal. I don't understand at all. I have a follow up appointment up at Prof Luxon's old clinic in November - it will be try another medication I know! Claire - do you just take pain killers for your headaches? Are you doing any different VRT exercises or are they the same as before? Jemma - I tried to fight the tiredness and that is what I have been told makes my headaches worse. So I have to build in a rest period each day. There is no way I could cope with work though. It is enough to get through each day even though I don't do that much. I do worry about everything though which I know doesn't help. I just want a glimpse of a longer, normal period. Really fed up with not being able to make future plans and look forward to them without wondering if I am going to be OK or not. AAARRRGH! Sorry to off -load but feeling miserable today. Sue - are you having any noticeable side effects with your tablets? I know the previous meds I have been put on like Topamax, Cymbalta (anti-epilepsy) I took just 1 tablet and felt terrible so stopped them. Hope the meds work and you feel really good soon. Hope everyone else is coping or even having easier times. Sandie - good luck for your son's wedding - thinking of you. Let us know how it all goes. Back under the duvet for me today! Lots of love, Gloria xx |
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Hi Sue, you described my appt exactlty - bewildering!! I did come away & within a few hours of soaking up the information I thought why didnt I mention 'this', or I should have said 'that' I think we are the experts you are so right. Gloria, my VRT is more or less the same as before nothing new really. The neurologist also said that if VRT hadnt helped within a month then he thought it probably wouldnt!! Sorry for those still waiting for a referral. I am going to persevere with it though I have a VRT appt next Thurs so will see what they say. Probably not what I wanted to hear but what does he know anyway?? Topamax was one of the drugs he mentioned, my face must have been a give away because as he mentioned all the drug possibilities he looked at me & said " you're not keen on the idea of taking medication are you?" err no in a word. I have managed more or less the last 10 months without & as I am making very small progress I dont want to interfere with anything. Or am I just being a woossy who doesnt want to risk side affects? The only things I take are Nurofen but I try & wait til it is really bad before giving in to them. Yem my friends wedding is the 23rd October so really hoping to feel okay on the day (& night) we are staying over at the hotel where the reception is so at least I can slope off if I need to. Went to the gym toady was hard work as I also booked myself an appt with the beauty therapist there & had my eyelashes tinted first, didnt think about the fact that I would have to lay down flat on my back with my eyes closed for 15 mins. Not easy for a Labs/MAV/BPPV sufferer!!!! So a bit swirly on the treadmill :) Anyway bye for now Hope you enjoy your day under the duvet Gloria x Claire x |
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Claire, you neurologist visit does sound confusing. I am not sure how he decided you have MAV as I thought that happened more in episodes of vertigo and not constant off balance. Also if you showed up a vestibular weakness on the caloric test doesn't this suggest labs/VN rather than MAV - unless MAV causes damage to the vestibular nerve, im not sure????... Also his comments about VRT seem misleading. My neurolgist suggested I do VRT after 9 months. The Emma/Ilia labs website says the following about VRT... "Now, before we go into how VRT works, we feel it important to mention that VRT is not popular with all health professionals. Emma experienced a situation at her 6 month mark, where she asked her GP for referral to VRT, only to get the reply “We will only refer you if you cannot function at all. Anyway, the exercises don’t help”. This was obviously upsetting and is bad practice. In reality, you have a right to demand VRT if you are at or beyond the 2 month mark. The longer you leave it, the longer VRT actually takes to work. It was about 1 and a half years before Emma got to VRT and about 3 years for Ilia. Getting there earlier could have quickened both of our recoveries. The fact is VRT does work (we will give you some figures later) for most so stick to your guns and if you feel you need VRT – then demand it." Sue - the neck thing is all part of this I am sure. All the muscles and nerves are connected and as the brain and inner ear are so close to the neck and it is so important to balance, it is really affected when something goes wrong. Gloria - sorry you are having a rough patch. I am plodding along much the same. Don't see any clear signs of improvement at the moment and it is frustrating. I just need that to keep the hope alive. Tina forgot to mention you last time. Hope you are ok? All those going to weddings in the next week or so, good luck and hope you feel better than you expect. Take care all xxx |
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Jemma, Claire and everyone, MIgraine Associated Vertigo, can be chronic 24/7 or come in attacks. It can appear with having had labs or just by itself or with BPPV. It will interfere with compensation if you are recovering from an injury to your inner ear. So the MAV may have to be treated before the VRT can work. The VRT can only work if the brain has a fairly steady baseline to work from. If there are a lot of fluctuations due to a migraine process, then VRT will not do much of anything. Once the fluctuations have been resolved the VRT can work, even years later! |
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Jemma The more i think about my appt yesterday the more confused I am :( I chose to ignore his comments about VRT as for the last 2 weeks I have been religously doing it 2x a day & I am feelin a little better. I always thought the visit would be a waste of time & I now think I may have been right. Oh well back to the plodding on doing it my way. I am going to continue with the VRT as its better than taking tablets I dont want. I have come to a conclusion. I think we all find a way of coping with this, we have our own theories on what does & doesnt work for us & it may take us a while to get there but we get there in the end. The lovely thing is we can all help each other along the way an awful lot more than any appt with any 'specialist'. So to all you fellow plodders, thanks for being there & lots of love & luck Claire |
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Hi to Everyone. It's been a while since I posted. I returned to work full time since 9/7/2010. With this illness, a fulltime job, an active 3 year-old, and a 3 month-old, it gets frustrating and depressing at times. I'm trying to do as much normal as possible. When I'm working, I feel as if I might be on the road to recovery...but when I'm home, I feel all sorts of odd symptoms. I guess it's because at home I don't have much to concentrate on like at work..who knows. As for my ear infection, I'm starting to feel heart palpitations again. It's been over two months since I have all these dizziness, headaches. I'm starting to wonder if I'll ever be able to travel far from home, to live life like I used to. For those of you that have had better days, keep on having more of those days and hope you guys are on your roads to recovery. kia |
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Claire I'm beginning to think all neurologists put our symptoms down to migraine. I don't think they know what else to say! I'm holding onto the hope that this new ENT consultant I have who specialises in Neurotology will be able to help me. Up until last night I have almost been dizzy free since coming off the pill two weeks ago. Dpn't get me wrong my balance is still a little off when I walk but I am hoping this will correct itself with time. Then last night the swirly head returned but I am trying to stay positive. I can't expect it to correct itself in 2 weeks. What I did notice was that I experienced horrific ear pain last night and today so maybe the sacs behind me ears have filled with fluid again. I see my consultant again tomorrow so hopefully he will be able to provide me with a few more answers. One thing I wanted to ask you all was if any of you went through a period of experiencing hot flushes? Every so often my back feels on fire but it isn't to touch and it makes me feel really yucky. It could be hormone related as he has totally messed up my cycle taking me off the pill and I didn't have it before then. Anyway I will let you all know any information I find out tomorrow. Take care all Ash xx |
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Hi All, Still living in a wibbly wobbly world, this relapse has taken me way way back but Claire you are giving me hope that it will pass just like yours has done hopefully. I have been to my doc and he says I need to see the neuro physio as I am suffering terrible neck and ear pain. It's the same as when this all started although I think this time around I am coping better and I am not suffering from the anxiety that I had before. I did manage to get out on Wednesday and went into town with my daughter but the lighting in the stores was just too much for me and I ended up coming home. It made me feel a bit of a failure so ended up in tears when I got home. I seem to manage ok in the home but outside is a different matter. I also had to stop going to the gym as I am just too unbalanced and the car journey there would do me no favours at all. I have been reading and keeping up with everyone. I know some of us are not doing too good. It's so hard to do but I guess we must try and stay positive that this will pass one day. Love to all Shirley xx |
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Shirley, Sorry its all gone horribly wrong for you lately I know my 3 month relapse knocked me a bit & I still dont know if its gone completely still having swirly moments but I am definitely better than I was & I am pre menstrual so usually a bad time for me. I find that I am not too bad in the day & only really swirly in the evenings now which I can cope with. I am at the gym almost every day now so hope to keep it up, mind you all the weight I lost before has crept back up but oh well you cant have everything!! I really hope this is just 'another' blip for you & you will come out of it again soon. Kia I always feel worse when i am at home & when I finally sit down at the end of the day is when it hits me. My anxiety has subsided now but was awful for the first 4 months or so. Once I realised exactly what was going on & got used to all the wierd symptoms I learned to ignore it all & have stopped timing my heart (which became an obsession for a while) I really hope that like me after a few months you will learn to cope with it all & find a way of getting through each day & hopefully your symptoms may ease off a little, I know how hard it is with children to look after too, I am lucky mine are 10 & 12 so a little more self sufficient than your two little ones, good luck thinking of you x Ash I got hot flushes right at the start of all this puit it down to the infection or virus that caused it all. Yours could be hormone linked though. I hope you have a bit more luck with your 'specialist' & look forward to hearing what he/she has to say. Love to everyone else Claire x |
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Hi Everyone, I just wanted to say Hi, and let you know that I'm feeling a lot better. I've been back on my anti migraine medication 2 and a half weeks now (after a 4 day break in which all my symptoms crept back) and I feel a LOT less dizzy. Besides the blocked ears, and the ringing, and the fatigue, and occasional ear pain, I almost feel normal! There is still slight movement, and I feel it when I'm in bed at night more, but it is gradually but noticeably less each day I'm on the tablets. I'm now starting to really fear coming off them ever, in case everything comes back.For the whole nearly four months now, I have been on a strict no salt diet, haven't had any caffeine or alcohol, have been eating loads of fruit and vegies, taking multivitamins, drinking lots of water, and trying to walk at least 2 to 3 km every day or second day, so maaaybe that is also starting to make a difference, Who knows? The drug I'm on is Sibelium (generic name Flunarizine). It is an anti migraine, calcium channel blocker, and I have absolutely no side effects. I heard Topomax ect has strong side effects, but this is a different type of drug. I was scared before I took it because I have to be really pushed to even take Nurofen, and I have strong anxiety just on antihistamines. But it honestly has been fine, and the strongest common side effects it is known to have is drowsiness or increase in appetite, which I thought I could handle. I haven't been diagnosed as MAV but the neurologist said he has been prescribing this for 20 years when people have 24/7 dizziness/vertigo and it works really well. So if anyone is game, they should look into it. David - I was really worried about Lyme disease for quite a while, but no one in Australia knows anything about it because we don't have it here. Unfortunately there is a chance I could have picked it up in Europe. (I have been living there for the last 4 years) There are no LLMDs in Australia, but I am going to book an appointment with a pathologist I read about who specialises in tick borne diseases, just so I can rule it out. Thanks for your information on it, it has been very helpful to me. I hope everyone is starting to feel better soon, relapses really suck and I still really fear them. It's been nearly 4 months for me now, and it's so hard to imagine a normal life again sometimes, so I really feel for all of you and remember you in my prayers. We'll all get through this eventually and it will just be something to look back on and be thankful we're not there anymore. Ish x |
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Hi everyone, Great to hear updates from Ash, Kia and Ish. I'm very grateful to those taking medication and letting us know how they are reacting. Ish - I am going to speak to my doctor about Sibelium, because as Tina has indicated, if there is a MAV element to labs, you have to have meds to treat the migraines. I have been stubborn and not want to go on medication, because as you say, what happens when you stop?! But my VRT therapist did say that medication is the only way forward with MAV. I've got so far down the line now, and totally fed up with it al, I will try anything. Ash - whilst your hot flushes may be to do with you coming off the pill, it is also a side effect of this monster. I used to be drenched in sweat. That has eased off quite a bit and only feel flushed occasionally now, which usually indicates to me that I'm going to have not such a good day! Claire - you are so right. I think there is a point of realising that all the professionals we see have the same script! You end up working out what helps you and hoping the light at the end of the tunnel is forever nearer. It will be interesting to see how your time of the month affects you this time and whether it was as bad as the last. If it's OK, then maybe an indication you are on the up! So hope so. Shirley - so great to hear from you too. I had been thinking of you especially as last time you posted you were not at all good. I suppose if there are any redeeming features of this thing and that is when you relapse, you don't panic quite so much because you have experienced it all before! But isn't it the relapses that knock your confidence big time, because you just think it is never going to get better. Hold on in there girl, you got through before and there are better days ahead. As Claire said, thank goodness we all have each other on here for support. I was thinking the other day of the Euromillions of £113 million pounds still not claimed and dreamt what I could do with just a fraction of that! Alas, still don't think having that sort of money would find a cure! Might make my surroundings a bit more comfortable though and having the problem of how to spend it may help take my mind off how I feel LOL!!!! Jemma/Tina/Sue and all - love to you and thinking of you. Take care and pray you all have better week-ends. Love, Gloria xx
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Hi again, Sorry @Brad my comment was directed at you! I have no idea why I called you David, only I'm getting confused over all the posts from way back. LOL! @Gloria - I'll be really interested to hear what your doc says about the Sibelium and how it goes for you. Cheers, Ish |
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Gloria, you might want to try the migraine preventative diet to start. Caffeine, for example is a huge trigger, so cutting out coffee, chocolate, and tea are VERY important. But besides that, thanks for your sweet message. I am sorry I don't thoroughly read everyone's comments, because the scrolling up and down is just too much and I am on the computer a lot at work. But I too wish everyone on here and all the dizzies of the world relief from this affliction. I feel part of my mission to that end, is to inform people that labyrinthitis may be only partly responsible for one's continuing symptoms and that a process that presents with dizziness and visual disturbances, even if it is 24/7 may also be a migraine as well. While migraines tend to run in families, I think anyone is capable of developing migraines particularly after a head injury, the stress of an inner ear injury, or hormonal fluctuations especially as women reach their late 30s and early 40s and their progesterone levels begin to go down in comparison with their estrogen levels. So I would also recommend, if you are a woman, getting your hormone levels checked. It could be an inflammatory condition causing the migraines arising from eating foods that one is allergic to , so that should probably be checked out as well. Anyway, I feel like we need to keep looking and researching because our doctors don't have the time. |
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I hope everybody is doing well this weekend. I've been doing lots better, but it has been really gradual, and I still feel only about 85% all the time. I have been outside walking a bit which seems to be a good form of VRT. I am trying to cut back on coffee, not much change otherwise in diet because I already feel I eat pretty well. The big issue for me lately has been the tingly limbs. I went for a week with my arms and hands, legs and feet feeling as though they were asleep all the time! It drove me crazy! Couple that with the lingering lack of desire to do anything-not lack of energy, but just not caring, no creative urge. Everything seemed like way too much effort. Finally the tingling has been gradually lessening to where it's now just in the background along with the swirlies. I drove myself to town yesterday for the first time since all this started, about 30 miles, and went to have lunch with a friend, did some small shopping, stuff like that. By the time I started home, I was kinda woozy. I told my husband it was like driving drunk! Each day, though, I've felt pretty yuck right at waking up, then better through the day. I am definitely recovering, and you guys will, too. I keep all of you in my prayers daily; hang on! Ellen |
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Anyone got any ideas on how I can get to sleep and stay asleep. Everytime I lay down, even with 3 pillows, I get that spinny, passing out feeling. Quite scary. Also, this time round my eyes are just so sensitive, both to light and movement. Just want to keep them closed all the time. I feel like they are constantly streaming. I walked up to the postbox this morning with sunglasses on even though the sun wasn't out .. must have looked a right sight lol. Ellen I am really trying to hang on !! |
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Shirley Can't believe how much you seem to be suffering at the moment and there was a time not that long back that it looked like you might be turning a corner! That lying down dizzy I had at the start. Thank goodness don't get it that bad now at night. I just remember sleeping on 3 pillows too I dont know what else to suggest apart from sleepng in a reclining chair until the 'blip' passes. Poor you I really feel for you. When will all this crap end for us all?? Sounds like it could be migraine related too?? Ellen Glad you seem to be slightly improved for now. I have had all sorts of wierd tingles & sensations since this all started, every now & then it creeps up on me again just to remind me of it! It's funny you feel yuk in the mornings I am at my best in the mornings so thats my Gym time. I haven't had caffeine since this all started not sure it helps but too scared to reintroduce it til it all goes away. I had a spa day today at Center Parcs with some friends. After about 2 hours started to get a really bad headache (also time of month). It's been with me all day now can't get rid & really swirly headed shaky legs AAAARRRRGGGHHH Just when I thought things might be improving!! :( One funny thing though I went to some friends on Sat night with Hubby & the girls, got home at 2am after drinking almost a whole bottle of wine & danced to some old 80's tunes, I actually felt the best I had for ages the alcohol made me 'not' dizzy. What's that all about?? Unfortunately felt 'dizzy' in the morning but had a good night & forgot everything so hoping for much the same this Saturday for my friends' wedding. i am not saying go out & get drunk but what's the harm in trying?? :) Claire |
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Just read all that back & realised I think my space bar may be faulty!!! Hope it hasnt made you dizzy reading it :() [I edited your comment to put the missing spaces in — Rich] |
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Dear all, After having a good few days, I've had the worst headache today. Although, diagnosed with MAV, I don't usually get the full blown headache it's more like a hangover usually. After getting quite excited about my VRT, it seems that the doctor at the surgery had never heard of VRT, so 5 days later and this time another trip to see another doctor - a locum and I'm being refered back to ENT. Is it me or does everyone have this pillar to post situation? Claire you seem to be feeling better, I hope it continues. Wine as a cure, now that is a remedy I would try, I'm afraid no alcohol for me it's not recomended with Verapamil! I hope you continue to feel better. Thanks Tina for all your usefull advice, I will try to cut my caffeine intake. Gloria have you started any new medication yet? You sound like me in that you would try anything just to feel better, we must be due a "normal" time soon. Ellen I know what you mean by feeling woozy and drunk, I too feel worse in the morning, but usually get better as the day goes by. Shirley do you get BPPV only that gives you the spinning sensation? I sometimes describe it like I have those joke glasses on that bounce in and out. It's so hard to focus that every day tasks like reading, writing are so difficult. I hope that you feel better soon. To everyone else suffering at the moment I hope you find something to ease your symptoms and if you find a cure post it on here ! Love Sue x |
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Hi everyone, Just 3 days to go before my god-daughter's wedding. Having battled through a yuk week with urine infection which gave me more headaches, I just sobbed my heart out yesterday and pleaded with someone to give me a break for the next few days at least. I just want to remember how much I enjoyed my god-daughter's wedding, not how much I couldn't enjoy it because I felt so rotten. Anyway, feel a bit better today - so who knows maybe someone answered my prayers. Got a copy of the letter the NHS ENT guy sent to my GP. I saw him just before we went to Cornwall. He states that it appears I have had Vestibular Neuritis, and although surprised (!!!!) I haven't recovered by now, wants me to go for more comprehensive vestibular testing at another hospital and have intensive VRT!!!!!!!!!!! This is because I only had the Caloric and ENG testing done before. Claire - I so hope you have a lovely day on Saturday and if I was more brave would take a leaf out of your book and go for the bottle of wine!! Sounds like you had fun and much deserved I say. Tina - am pretty much doing the migraine diet. Don't have caffeine, don't drink alcohol (can't!) and no chocolate, cheese or citrus fruit with me. Eat fresh, good quality food in the main and try not to eat a lot of wheat based foods - hardly any in fact. So dull!! I forgot to ask you Tina - do you still get dizzy, swimmy headed still? Shirley - you really are going through it again. What I think is so unfair, is that after a brief good patch and you have a relapse, the relapse takes weeks and weeks to improve. Why can't it be the other way around. Few days bad and weeks and weeks of good! I have had terrible sleep issues since this thing. I bought the Boots version (cheaper and exactly same ingredients) of Nytol. Take 2 a bit before you go to bed - for me it has worked a treat and I do feel a lot more relaxed when I wake up and without that drugged feeling. Try them. I also have what they call photosensitivity. Can't take bright light. Eyes really hurt. As I wear glasses anyway - I bought a pair of those 'overglasses' sunglasses. They are quite big, but at least big sunglasses are the fashion at the moment - so I don't look that odd!!! I have to wear them even when the sun isn't shining but it is quite bright. Because they are closed at the top and sides, they really do prevent the bright light affecting you. I don't care what I look like because they have helped. You will come out of this Shirley. It has happened before and it will again. Love and hugs to you oxox. Ellen - so glad you are feeling a lot better - I hope it lasts and lasts. Ish - I have to go and see my GP about Sibelium. Apparently it is not licensed or marketed here in the UK, but I think some headaches specialists seem to have it. I may have to pay. Anyway, will keep you updated. Sue who posted on here earlier. She takes Verapamil which is a calcium channel blocker and in the same group as Sibelium, but it appears to have different side effects. That is the nearest equivalent in the UK. Sue - how is it going? Well, may not be able to post til after the wedding party have left next Monday. Fingers crossed!! Take care everyone. Hugs, Gloria xx |
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Hey everybody welcome to Page 13, I’m at 11 months still swaying like hell 24/7 yet I find this funny im not dizzy at all I don’t feel swirly headed as i did for months at the start of this thing my head is actually very clear and feels as I did before this beast affected me. I’m still not quite sure what I’m suffering from whether its MDDS( I haven’t been on a cruise ship in years or boat) or damage caused by my true spinning attack I had 11 months ago which precipitated all the horrible symptoms i have experienced, of which most have resolved themselves. I’m always questioning can LABS cause MDDS cause I worry as I’ve heard horror stories about that condition and swaying lasting for years, I’m assuming it’s not but i still wonder when these horrible movement sensations will evaporate. Anyways Going to see one of the top specialists in the world in two months Dr. Halymagyi hopefully he will be some help because I’ve had some terrible problems with the medical community and this condition constantly telling me its anxiety related, I’m not going to listen to some psychologist sit there and tell me I’m not swaying if they could just feel how I feel for a day and sit there and tell me it’s all a product of their mind, sigh. I’m an extremely driven person and don’t tend to malinger around these problems I work 4 days a week, 4 days of intense weight lifting and 3 days of University but this condition has taken a toll over my life, it just shows how debilitating vertigo can be. This has been the worst year f my life and if this condition can greatly improve and my health can return back to normal ill be so grateful i think that I’ll be happy for the rest of my life despite what happens to me. I might actually give in during my uni holidays in 3 weeks and start taking Klonapin I’ve head it can help eliminate the swaying a low dosage but I’ll talk to my new specialist about whether it will help as I’ve heard on dizzy boards it can help in certain people. Currently im taking 7500 mg of gingko , st,johns wort and claratyne a decongestant which I’m trailing that apparently can help people with inner ear problems by reducing the excess fluid in your ear. Anyways that’s enough of my rant I hope everyone out there continues to improve, i look foward to the day im still again i havent felt still since November 16th 2009 |
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Hi everyone Well today was my birthday and I was worried I was not going to enjoy it at all because I have been so tired this last week ( I wonder if I have some kind of mild virus) however today was actually not bad. I remembered my birthday last year and I am kind of hopeful that i have improved and am not as dizzy as i was then and at least i did not cry like last year. I managed to go out for lunch and my sister visited me so overall it has been quite good. I still feel 'off' in my head, my neck started to get tight after a while and i am a bit tired now but i am not going to complain too much. As I said I have felt so tired and its hard to know what to do. Just keep going i guess. Sounds like everyone is a bit rough at the moment. Gloria I will be thinking about you on saturday and do hope you manage to cope ok and even enjoy it. I am interested in these comprehensive ENG tests you mention. None of my ENTs or doctors wanted to see me again so i wouldnt know where to go if i was to go back. I have just been left to get on with it! I wonder if the further tests would show anything because i reckon we have both damaged the same part of our ear/s. Claire I am sure you are improving because you said you often just feel dizzy later in the day and I remember Melissa on this site saying the same thing and then she recovered fully not that long after. Shirley so sorry to hear of your relapse. The spinning must be awful. Keep remembering that you have been there before and you will get through it again. S keep pushing the doctors. I don't know you but I am certain from what you say that you do not have this feeling due to anxiety. You know yourself how you feel and if you believe it is inner ear then it is very likely to be that. I dont think anxiety would cause that kind of permanent swaying feeling. Anxiety comes and goes, surges and then eases a bit, changes in different situations. The doctors need to understand that and not fob you off. Everyone else, hope you doing ok?.... Love Jemma xxx |
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Hello everyone, Thanks Rich for editing my previous post definitely a faulty space bar!! Also while I'm in thanking mode, thanks for keeping this thread going for so long bet you never imagined it to go for this long when you charted your own symptoms at the beginning!!! Just a little update from me. Went to see the VRT therapist today & feel like its the first time someone has been totally honest & understanding. I'm afraid after 3 days with a severe headache & getting to the end of my teather I cried in her office!!! She has decided that although VRT is helpful & can take months to start working she feels that due to the intensity of it & the fact I was charting it 2x a day & recording how I was feeling it maybe hasnt been helpful to me. So new strategy, less intense VRT, no recording it so as not to focus on the negative & try to walk a little each day. As I am always so much worse as soon as I stop & sit down in the evening she has encouraged me to take time out in the day to listen to my relaxation CD use relaxing techniques and not keep going at 100 miles an hour, wgich is basically what I do to take my mind off it & ignore it. She was basically honest & said it will be a long haul. Due to the fact I was told at the beginning it should only last a few weeks that has been in the back of my mind. She said to take each moment as it comes not focus on the future & to believe that it will go in the end. This was much more like a good counselling session for me & I hope that I can take it all on board.She said she sees many people with the same problem & there is no quick fix for long term sufferers but it 'wiil' go. In a strange way although I am still nursing the headache from hell (with swirly head) I feel a little more hopeful today :) Anyway I have a wedding this weekend & am really looking forward to it & I will not even think about how I will feel on Saturday I will just go with the flow. Off to Cardiff with the family for 4 nights next week so really looking forward to that Love to you all & enjoy your wedding too Gloria. Happy Birthday Jemma xx Claire xx |
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Hi everyone So I went back to my consultant last Saturday and the 2nd MRI was clear. The sacs that fill with fluid were clear and my hearing test was normal so he doesn't think I have typical meneires disease. He still thinks it may be hormone related so I am having my hormone levels checked. If these come back clear then he was honest and said he is not sure what it is. He said sometimes things happen to the brain/ inner ear and no cause is ever found. After all that I'm a thousand pound worse off and nowhere closer to finding a cause/ cure!! I was glad that he ruled out a few of the 4 different diagnoses I have had though!! He said I don't have bbpv and mav was highly unlikely. Apparently if you have dizziness 24/7 that is migraine related then the blood vessel activity would show up on the MRI scan. I think my first ent was right when he diagnosed vn. All my symptoms relate to it and my blood work at the time showed that my body was fighting a virus. Anyway he has referred me for vrt therapy. He didn't seem confident that it would work but he thought it would help me with my confidence. I must say I'm not sure if I should do it or not. I do notice improvements and would vrt knock me back? My consultant said that I should try and ease back into work and driving but I don't know how I'm going to cope! I can barely cope with a day of walking and doing a bit of shopping. I'm an auditor so I work long hours and have to travel all over the country. What am I going to do?! Claire do you find that you also get queasy when driving and not only as a passenger? The doc said he thinks this symptom is in my head cos I felt bad at the start of the illness. Also does anyone get a headache in the ear area and behind the eye? It is just a dull ache sometimes but I think it maybe to do with my neck because this really hurts at the moment. The headache doesn't get worse with movement and it comes and goes. My scalp also sometimes hurts to touch; has anyone else experienced this? Gloria/ Claire - I hope you enjoy the wedding this weekend and get through the day symptom free To everyone else - hope you are all well Ashley xx |
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Ashley, Your weird head pains and the sore spots on your scalp are signs of migraine. I get them too. You could have had VN which kicked in the migraine stuff. Happy Birthday Jemma! Gloria-- You asked me about my symptoms. I am still swimmy headed and dizzy. On really bad days I have a sense of false motion that makes me feel like my insides from head to toe are going 60 miles an hour, then it is really hard to focus. I also wanted to say that my daughter got married a few months ago and I was even able to dance a bit at her wedding. Somehow the adrenaline rush helps our vestibular systems cope better, so you should do just fine! |
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I just commented, but I didn't realize I was signed out, so it will come up anonymous, but it is me! |
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Hi tina my consultant didn't seem to think it was migraine. I have no history of it and don't get the other symptoms. He said migraine pain is so severe that you can't move and I can go about my normal day with it. As a mentioned on my previous post he said mav is basically saying you have a 24/7 type of migraine and this would show on an MRI. Don't get me wrong I'm not totally dismissing what you say. I really hope I haven't developed a migraine as friends have them and I know what bad times they go through. I've had a rough enough ride already, I don't want to be a migraine sufferer too! Lol! Ashley xx |
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Hi Ashley, I can understand your feelings. If you are satisfied with your progress and treatment, then forget about Migraine Associated Vertigo. But if you feel dissatisfied at some point, then that might be something else to explore. There's more and more good info on the web about the condition. Timothy Hain's Dizziness and Balance website is a good start. Also it's nice to know that 40% of people with dizziness from migraines can improve with diet alone. |
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Hi All, I've had a really bad day today. I've been a bit dizzier (or swirly headed as u all seem to call it:), but instead of soldiering through it's really knocked me today. I'm just so sick and tired of feeling like this and really do despair over whether life is ever gonna be worth living again. The dizziness isn't as bad as it was a month ago or anything, but my tolerance has just hit bottom I think. Especially when the meds seemed to be working and improving things, and then the improvement stopped and I've just stayed with this general slight swirly headed floaty thing that won't stop. AAARGH! I'm going to go back to the neuro and see about upping the dose, which he did suggest was possible. I'm on a low dose anyway so I'll see how it goes. I know I shouldn't complain because most of you have been suffering this a lot longer than me. The four month mark is just really trying me for some reason. S - I was following your posts from way back because I had the same type of swaying/rocking sensation the whole time. It died down after 2 months but I still have it slightly, especially when I lie down at night. It is never totally gone. I really feel for you. Believe me, it is NOT anxiety. I was fobbed off with that a lot too. For me, it's the swirly head that I really really hate. Are you in Sydney? I'm interested also in seeing Dr Halmagyi. Gloria - Sibelium is not registered here in Australia either. My neuro obtained special permission from Canberra for me to take it, so I have to pay for it too. It's only about $20 though so it's worth it for me. It is registered in mainland Europe and Middle East and Asia. Don't know why not here too. Hope you find something that works for you anyway. Tina - thanks for the info on MAV, mine really sounds it could be that, or related in some way. I think there are a number of possible causes for what we are all going through and the symptoms are all so similar it really seems hit and miss if we ever get the correct diagnosis. I just hope medical science catches up really soon and helps us all. Cheers, Ish |
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Hi to Everyone For those of you that are long time sufferers, do you sometime feel as if you're energetic then the next day, you're all down, tired, and feel sick to your stomach? Sometimes I would feel good for 3-4 days and able to eat, then the nest day or two, I would have extreme loss of appetite and feel crappy. Some nights I can sleep then other nights I wake up every 1-2 hours with a fast heart beat. It's been almost 3 months for me now. I hope my better days are stretching longer. For everyone of you, please please have more better days!!! Kia |
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I remember in the earlier months having trouble sleeping and waking up with a rapid heartbeat. Also the ebbs and flows in terms of nausea, appetite and energy levels are familiar. It's all part of the process of your body adapting to having a vestibular disorder, but it does get better. |
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Hi all, Well, I survived!!! Although I am now SO exhausted I could sleep for a month, the wedding went off without a hitch and was lovely. I was OK. I wouldn't say too great, but took Stugeron, ibuprofen and got through it. I was fine on the Thursday before and thought if this feeling lasts then everything will be great. Then the day before, Friday, migraine and headaches abound, dizzy and so off. You just have to accept it - I took Stugeron and painkillers - didn't care at this point, normally over the last 15 months I have tried not to take anything if I can help it, but when you must you must. The ceremony was beautiful and I danced the night away. I found concentrating on making conversation with people testing and had to disappear for a few minutes to gather myself. Had a few sips of champagne but stayed off alcohol. Had a good time nonetheless. Also, whilst not feeling at all brilliant, I haven't reacted to the chaos of the last week at all badly, which I honestly thought I would do - other than the tiredness. (Maybe it is waiting for me in the wings!!) Jemma - I am so sorry I forgot your birthday. I cannot believe we were commiserating a year ago at the same time. Heartfelt wishes go to you and glad you had a good day. As you say, we can compare how we were last year at this time and know we have improved. It is slow, but at least we can see progress. This time next year Jemma, you never know, we could be celebrating feeling NORMAL !!! Claire - I read your post about your visit to the VRT therapist which mirrored my last visit exactly - the relaxation cd's, less intense VRT, but at least she was very honest with you and even though you know it is the long haul, you know it will go. I think we all accept it being slow slow slow, but just want to know normal life will happen again. Have a fab time in Cardiff. Ash - VRT helps. I personally don't think it cures, but if you are having a spell of bad dizziness, then doing some VRT does help. Doing repeated head movements as in VRT gets the brain back on track and helps to stabilise you. When beginning, you may feel it is making you worse, but it will help and after a few days you should notice some difference. As for the ear pain and pain behind the ear and eye and sore head - have had all that as well as the neck pain. It is part and parcel for some. Interestingly, it seems to be a symptom for those who experience bad headaches/migraines with this. That doesn't necessarily mean you have MAV. As a migraine sufferer they have labelled me with that, although the last ENT consultant I saw said it was VN and I'm convinced it is that too. As you have read, progress is slow, but you do improve and all these niggling side effects do get less. As for work, well I cannot and could not cope with work. However, now, after 15 months of this, if I had too I suppose I would consider something part time, but as an auditor that is a hectic job - are you self-employed or do you work for a company? I would not make any hasty decision just yet Ash. In my experience I think you need at least a year, but for some they have no option than to return to work. If you can, leave it for a bit. Doctors encourage normality so you do not dwell on what is going to take a bit of a while to go, but whilst I get bored, at least I don't have the pressure of knowing I must go into work. Anyway, keep strong. Ish - sorry you are having a rougher patch. Alas, 4 months is an early stage for some of us. I think we pin our hopes on medicines or supplements thinking they maybe a cure. Having bought and tried every alternative remedy and medication, I think it is a false hope. However, what you may find because you are taking Sibelium for instance which should be lessening your headaches and therefore should give the brain more chance to recover, but I think you still experience the 'blips' that happen along the way. Have you progressed with trying to get to see this doctor you have in Australia and will you have to pay. Do you know how good he is? Anyway, fill us in when you find out more. Have better days Ish. Kia - hi - all of what you write is and has been the norm for many of us on here. I spoke to someone the other day who has menieres. Whilst not pleasant, she just gets now and again some dizziness, but it only lasts for seconds. She couldn't understand when I told her of the other millions of symptoms that I and most of us on here suffer as well other than just a bit swirly headed. I would be grateful for just that I think! You will have better times. S - good to hear from you. This Dr. Halmagyi - sounds good? How did you get a referral to see him? Can't wait until your appointment to see if he can shed any useful info to help us poor souls here in the UK! Many of us have spent pounds to see top specialists but seem to have come away with not very much really. If nothing S, your determination will get you through. Keep strong too. Well, if I write any more I will have used up all of page 13!!!! Love and hugs to everyone. Gloria xx |
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Hi everyone Gloria so glad you made it through the wedding ok, I was thinking of you. Did you find when you try to talk to people you feel 'off' in your head and start to feel swirly and are constantly checking yourself mentally as to how you feel? That is how I am in those situations. I also often find my eyes glazing over and I find it hard to focus and I tire so quickly. I have finished my Chronic fatigue course now. I do have another acupuncture apt at the end of November but I guess unless I go back to the doctors then that is it as far as medical help is concerned. I have thought about paying for private VRT - is it worth it?? Ash feel for you and the work situation. Your job sounds hard. I found I could not continue with my desk job although I think the fatigue has hit me harder than most. As for the rapid heartbeat thing, I had that really badly at first and still get it now sometimes. Today I had a horrible feeling when I was stationary in my car at the petrol station. I really felt like suddenly the car was rolling backwards, I pressed hard on the footbrake and then pulled the handbrake and it wouldn't stop. I was really scared and shaking and then I realised I hadn't been moving and the car behind me was no closer than it had been. It must have been a false sense of motion, horrible! I do have pain in my right ear at the moment, also a bit down my throat so am thinking maybe it is a mild viral thing. There are a lot of colds about right now... Claire, Ish, Kia, Tina, S hope you are all ok too and Sandie hope your son's wedding went well! Take care all xxx |
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First of all, I need to correct my time frame, because I realized I said three months in earlier posts, but I miscounted. It just seems like it's been that long, but this began for me at the end of July, so that's ten weeks now. Anyway... Ish--I'm having the same thing as you right now. I was feeling much better last week and then I got a cold or something; runny nose and irritated throat, and now the swirlies are worse along with pain in my affected ear and--oh, goody, something new!--tightness around my head. I've been weepy the last couple of days too because, as you said, while I am so much improved from when this started, I am so stinkin' sick of the whole thing and discouraged at the setback! I sure hope you're feeling better. Kia-- Yeah, I have the same 2 or 3 days pretty good, sometimes even nearly normal, then back down again with the lack of appetite, fatigue, heart palpitations, can't sleep normally and wake up every two hours. Do you also find that sleep just feels different? I don't fall asleep or wake the same as before this, if that makes sense. Gloria--I was thinking of you and praying for you last weekend in relation to the wedding; so glad you did well and had a lovely time! It almost seems like we have to retrain our brains to cope with every single possible circumstance that we might ever come across, stupid brain, so I'm very glad you did well. Yay for fun! Shirley--How you doing? I'm back to sleeping on the couch, too. Something about sleeping flat makes me really foggy the next day, and there's no way to prop comfortably on my bed. I used to like my couch. S-- I see you're taking St. John's Wort. I think it's helping; do you notice anything yet? To everyone, thanks for being here, thanks for sharing and keep doing whatever it takes to take your life back! Hugs and a nice cup of tea, Ellen |
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Hi all, Jemma - I am so with you on the talking to people thing. I can feel my head tightening and tightening if I concentrate on just one person's conversation. Equally, if I am having to chat to two or three people and my head is turning back and forth - like you, I get swirly headed. That is why I had to get my hubby to take me into the gardens (freezing I might add!!) just to calm my head down a bit. With regard to the private VRT, I'm not sure Jemma. I've seen a few VRT therapists now and they all give the same exercises and relaxation things to do. I'm still waiting for yet another referral to another VRT therapist who is supposedly going to do all these other tests - I haven't heard anything yet! When I get there and they shed new light on different exercises I will gladly pass them on. I just do usually once a day my usual head side to side, up and down stuff, walking heel to toe eyes closed moving head up and down and side to side. The other is to look diagonally up and down whilst walking, then I do the same but walking around in a circle around the kitchen table. That can make me a bit dizzy, but I do think it keeps me relatively stable. The feeling of going back in the car has happened to me a couple of times and was so scary. Recently, I have also had when just sitting watching the television and then just moved my head to speak to my hubby, split second extreme dizziness. The pain in your ear and down your throat I also get Jemma and have thought, here we go, sore throat, cold etc! Mine is my left ear though. Again it has lasted a couple of days and has gone, so I put it down to all the oddities of this thing. Anyway, take lots of care and everyone else too. Love, Gloria xx |
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Hi Gloria Thanks for your reply. By the way you look fab in your wedding outfit, it is really nice and bright, the colours are lovely! It is such a relief to know that all these things aren't just me. The way you have described it is just the same. My neck starts tightening when i have conversations and I need time out to let it relax! The pain in my ear is a bit less today, fingers crossed it will go completely because I really cant face a trip to the doctors and more blank faces when they tell me my ears are fine! I would really appreciate knowing if you get any new VRT and the outcome of the extra tests to see if its worth me having, I am sure we have very similar vestibular damage. My mum said to me a while back, 'there are so many different symptoms you have' and I felt she thought they couldn't possibly all be related. Thing is at least by coming on here I know they are. One things eases off, another thing appears. There are so many effects from this thing. Still hoping for normality one day!!! xxx |
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Hi folks: Hope all is well. Kia...what state / country are you located in? I had a lot of your same symptoms. Dizziness, nausea, fast heart beat when sleeping and at other times. Have you ever considered lyme disease? That was at the root of my labyrinthitis / dizziness. I was originally tested in March by my ENT and it was negative. Since then I have learned those tests are crap and miss 70% of the cases. I had to seek out an LLMD (Lyme Literate MD) who did a better, more sensitive test from the best lyme lab in the country. I came back highly positive. I have no idea when I got it as I had no rash nor do I remember a bite. less than 50% of people do. I've been in treatment for 6 months and am almost 100%!!!! If I hadn't gotten the proper diagnosis I shudder to think where I would be today. Probably waiting for my "labs" to clear. Again..not saying all people with labyrinthitis have lyme. But I strongly suggest everyone get a Western Blot from IGENEX (www.igenex.com) from an ILADS (www.ilads.org) trained LLMD just to be sure. Why not rule it out before you waste months and months of feeling unwell? If it is lyme..treating sooner than later can mean the difference between curing it and having permanent damage. Best of luck. I posted symptoms way above on this page. |
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Jemma I am just the same with the fatigue, I'm really suffering from it at the moment just like I did the first time round with this. In fact at the moment it's my main symptom. I just can't shake it off. I've even looked up ME symptoms and I have had every single one of them and am now starting to wonder if I have that aswell and this thing. I am turning into such a hypochondriac (not sure that's spelt right LOL) Gloria - you looks absolutely lovely in your wedding outfit. I am so glad you managed to enjoy the day - pacing yourself is the key to managing this I think. Claire - I think I will be taking the advise of your VRT therapist - this time around I am going to take it slow and not try to rush things. In actual fact I can't rush anything at the moment as I am so fatigued. I had a good day one day this week and decided to go mad and have a bit of a sort out and clean cupboards out etc. By the evening I was soooo tired and the next day, well woke up with the headache from hell and totally fatigued. So from now on even when I am feeling better I will be taking things slower and pace myself. It's so good to hear that it WILL go one day .. I do have doubts sometimes although I try to get them out of my head as soon as possible. Jemma I get pain in my ear but it seems to relate to the large gland (or muscle?) at the side of the neck that goes up to the back of the ear. Sometimes it protrudes at lot, or at least feels like it does, but when I spoke to my doctor about it he just looked in my ears and said they were clear. I also get the blank looks. Hope everyone is ok and has a great weekend. Hugs Shirley xx |
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Hi all, Shirley - lovely to hear from you. Isn't it strange how we all feel so so tired at the moment - me as well. In fact last week I felt I could have stayed in bed all day. I put mine down to the fact of having the wedding etc, but am sure it has brought back a lot of early symptoms that largely had faded to some extent. Like you said Jemma, I think I also had/have a bit of a viral something or the other as I have a cough, no cold but just a bit chesty. Shirley the pain behind the ear and at the side of the neck - again is something i have. There are 2 big muscles at the side of the neck the scalenes and the sternomastoid something or the others!! Not good with medical terms! These are the ones that will try and hold the head in place and even though we don't think so, are involuntarily doing that job and getting overworked. I'm sure they radiate to the nerves of the damaged ear and cause all these horrible pains. My theory anyway. I also feel as if I have become something of a hypochondriac! You get so many odd things and feelings and I always think I now have something else going on. That is why doctors and medics get people to return to work or do something active because you just focus on how you are all the time. For me, I don't feel I can commit to work and don't know what to do. I know for me I do dwell too much on all of this and have got to get a distraction. Christmas is around the corner and I do know I need to organise all of that and pace myself. Again like you Shirley I rush around because i feel a bit brighter to only undo all the good work. It is really difficult when you are used to being busy though. Brad - good to hear from you again and promoting the cause - for you anyway. Glad you are near 100%. I suppose if anyone is at all unsure bout why they have this then it is good to chat with their doctor about the possibility of lyme. Ellen - good to hear from you too. I can't believe I'm 16 months with this. For me I haven't had any better days as such, mine has been a constant but with improving, less symptoms over time. Tightness around the head - so part of this thing for many including myself. Horrible, horrible. I do appreciate you including me in your prayers and thinking of me Ellen last weekend - it obviously worked, because all in all I had a good time - suffering a bit now though, but at least I enjoyed an important day for me. So thank you. I'm joining Ellen with her cup of tea now - onwards and upwards and as Melissa used to say keeping the faith that one day we will all be rid! Love and hugs, Gloria xx |
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I believe that I might have this condition. Does anyone get "hot" feeling in their ears. I know it sounds strange but I sometimes get this feeling. Also, my worst symptom seems to be my eyes. Especially the right. They sometimes seem "stiff". It's hard to describe. My dizziness is gone most of the time. If only my eyes would get back to normal. Does anyone else experience this? Will I ever feel normal again? This has been going on for 8 weeks now. |
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Hi all, Jemma - just to let you know I have my next round of balance tests on Friday 12th November. I doubt that i will get the results or get to see the VRT therapist - but at least I have an appointment! Ish - also to let you know I have just been able to get a prescription for Sibelium! My GP was brilliant and although not registered here as in Australia, he has got it for me on our NHS system, which means I pay only a small amount. So here goes! Will keep you posted with, hopefully, progress. Anon- have you been diagnosed from a doctor that you may have or had labyrinthitis? 'Stiff' eyes have been reported by some on here and I have had sore, achey eyes and trouble with my vision. Even though the dizziness for me is not quite as constant as it was, I still get all the other symptoms alas! Claire - hope you had a good time in Cardiff and feel a lot better or certainly having a good phase - along one!! Love to all, Gloria xx |
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Gloria, I have not been diagnosed. Was having alot of dizziness and went to the hospital. Had head scan done and was negative. That was a relief. Went to an ENT and he put me on meds for dizziness but didn't help. Only made me more tired. About 25 years ago I suffered with dizziness for a long while and it eventually just went away. Doctors could never find what was wrong. I think they thought I was crazy. I'm wondering if this is the same thing as back then, although I have more symptoms. The last three days have been better. The symptoms aren't as "strong." Most of the dizziness is gone but I can't seem to shake the eye "stiffness" off completely. Equalibreum off a bit but better than it was before so I am thankful. Hopefully this is a sign of good things to come. |
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Hello Everyone, Gloria lovely profile pic :) Glad you enjoyed your wedding shame you didnt feel 100% but you were prepared for that I suppose? Good luck with all your new tests & appts hope they can come up with a new strategy (its about time) Shirley sorry you have had a horrible blip. know its hard for us women to give in but if your body is tired then just rest. Do you still listen to the relaxation cds? I do & my therapist said it would help to do this just to calm everything down each day. I dont suppose you are managing much with the exercise at the moment either. I havent been for 2 weeks & my youngest is now off school ill so havent been this week I hope to go tomorrow if shes back to school.Managed a walk with a friend on Mon 3 miles -1 hour. Therapist said even if I manage to have a walk each day this will help with everything. Jemma, How are you? Didnt you have VRT before? I think maybe it does help but now I am only doing 3 exercises a day only once & not recording it as the therapist felt that I was focusing too much on how dizzy I was feeling which does make sense. I have had that momentary feeling of movement before but not for a while I remember it being quite freaky & unpleasant. Good luck with accupuncture I am all for the natural remedies. Kia I totallyempathise with you I was exactly the same as you in the first few months. on good days really felt that I was getting better then kicked back down again for a few days.I lost 20 llbs at the start but have to say most of that has now gone back on (sadly!!) Mine has been ongoing for 10 months now but I have seen some real improvement in the lastweek or so.I dont like to jinx it so wont say too much for now. I have noticed that mainly throughout the day Iam okay & my symptoms only really appear in the evening & have had a few days/eves when I have pretty much been symptom free. Although my daughter is home ill with a nasty cold sorethroat so hoping I dont get that a it could knock me back again. My hormones play a part in mine too so have been taking vit B6 & evening primrose oil to see if that helps? Anon I have had the stiff eyes feeling too, also pressure feeling in front of head & bridge of nose its all part of the imbalance in the ear canals. Anyway hope to report again in a week or so & hope its positive. My therapist did say one thing to me & thats that 100 people may get Labrynthitis& 80 will recover within a few weeks but 20 will take longer or much longer,so to us 20% lots of love & positive thoughts Claire x |
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Hi everyone Well the last couple of weeks have been quite good for me (fingers crossed!). Still the off balance etc but I find I do have times, usually when I am busy doing something, where I forget about it for a bit. I am hoping those phases will gradually get longer and one day I never have to think about it because at the beginning you literally never stop thinking about it and are so conscious of every movement you make and how you feel. Gloria good luck with the balance tests, really looking forward to hearing the outcome. What is the sibelium you are taking actually for? Hope it works.... Shirley yeh I think some people get really tired with this and we must be the unlucky ones there. Anonymous - I have experienced the stiff eyes feeling but it has improved. For many months I even avoided moving my eyes and head as it made me dizzy but now I can do that a lot better. Ellen I am so with you on feeling that your brain needs to adjust to every situation again. I have certain places I go to regularly which I feel quite well adjusted to but if I go to new places I can feel more off balance again. Even when we got a new kitchen floor the other week the change made me feel strange for a bit until I got used to it. Claire I am so hopeful you have nearly beaten this because it sounds as those you are getting regular good phases. Fingers crossed you are almost out of the woods! your therapist seems to have lots of good info. I like hearing that it is reassuring. take care everyone xx |
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Hi all, Claire - fab news. Let's hope you are on the up and out of this hell! What 3 exercises are you doing? I'm only doing something once a day too. Not sure if it is having any effect as you read that VRT is supposed to induce dizziness. Mine isn't! Sometimes a bit unsteady. Jemma - hurrah for you too! Bet you never thought you'd hear the day when you said you actually had a good couple of weeks! This Sibelium is what Ish has been taking for migraines. It is also recommended for vertigo too unlike other calcium channel blockers which it is and I don't know what that means!! Anyway, given that I have been told because I suffer from migraines and that is hampering my recovery (not convinced) can only but try. Sue - if you are looking in - how are you on your Verapamil? And Ish - progress? Have felt horribly tired and weak this last few days. All the muscle aches back again. Probably after effects of the wedding and I had my flu jab last week too. You just get to the stage where you put everything down to labs - which I'm not sure is a good thing. Anyway, went to the doctors and got a blood test just to check everything out. Anyway, take care all and long may your good times continue Claire and Jemma. Hugs, Gloria xx |
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Soory been so busy lately guys, uni is wrapping up with exams To be honest i think im afflicted by two sets of symptoms, im affected by what i believe to be severe depression which is causing symptoms but this problem is caused by the 24/7 Rocking vertigo which also produces symptoms Ish- im 100% sure its not anxiety, problem is i have a history of general anxiety disorder before this problem afflicted me literally over night :/ and i know my body better then anyone else, and they are just reading off my history its unfortunate they can do that Gloria- i had a great holiday, only 3 weeks till i see the best doctor in Australia. Ellen- i do think the St.John worts is helping to some extent I still would give anything to recover, i try to pray alot cause apart from time it is the only thing you do i guess :9 |
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Hi S, Good to hear from you. So glad you had a great holiday - it does help to forget a bit whilst you are in different surroundings. You say you have been busy with your exams etc. Easier said than done, but try to give yourself some chill out time each day if poss. My VRT therapist explained very well when she said that because our brain and balance aren't working well; for the brain to deal with an overload of other stuff just sends it into more of a spin. Which is why she gave me these relaxation tapes. Now, I find it VERY difficult to unwind. Listening to these tapes, my mind is racing with all the things I could be doing instead of lying down doing nothing!!! However, when I was strict with myself and did this for a week - it did work - well, helped a lot anyway. As anxiety is a big thing with this condition (involuntary too), if you have had a predisposing ailment, then doctors as you, say home straight in on that right away. Mine has been because I have migraines so they have pin-pointed that as the cause. Anyway, take it easy and do let us know how your appointment goes. Know what you mean about the praying a lot - after you've exhausted all other channels! Take care and everyone else too. Hugs, Gloria xx |
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Hi Everyone, Just thought I'd let you know that I'm feeling much better. I got really down there for a week or so but I've had some real improvement since then. The swirly head is gradually getting less and less, and yesterday and today I noticed it's really almost completely gone. I'm still floating around on the bed slightly when I close my eyes at night, but much less than before. I'm still taking the tablets, I really think they've been a lifesaver for me. I think they have anyway, you can never really know if you would have improved without them, but my headaches and ear pain stopped immediately after I started taking them so they've been good for that reason if nothing else. S - sorry to hear you're dealing with depression as well. I've got a history of anxiety and depression too, so I've been consciously fighting falling into it this whole time. The doctors always put everything down to that when u have a history. It's BS. But at least you're going to see Dr Halmagyi soon and hopefully you'll get some answers. Do let us know how you go.PS - I pray a lot too, and I'll remember to include you and everyone else on here in my prayers:) Jemma- I'm so glad to hear you're feeling better and having good moments. It's been so long for you, maybe this is the light at the end of your tunnel. I hope so. So glad to hear some of you are having better days, it's such a rollercoaster isn't it? Take care, Ish |
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Hi folks: So..I'm here bugging you all again about lyme. I thought I would include a post from a friend a thedizzylounge.com There is a thread there to "Please Consider Lyme Disease" Here is a message from a long time dizzy sufferer who was given diagnoses of MAV, Labs, VN, etc, etc, etc. Guess what...she just tested postive on an IGENEX Western Blot for lyme (not on the regular western blot or ELISA as they are not sensitive enough.) Lyme is in Europe and Australia. There is a woman in New South Wales who is currently suing the Australian government because her husband was ill and they refused to treat him for lyme citing it didn't exist in Australia. When he finally passed, they did the autopsy and guess what...he was riddled with it. Again..regular tests won't do. IGENEX and an Lyme Literate MD (LLMD) is what you need. If you continue to have a cyclical illness (Relapsing / remitting) and have been dizzy for a long time, consider lyme to get well. I'm 95% and am in 6 months of treatment. My dizziness is gone. I only have some mild tinnitus left and some mild twitching of my calfs. My anxiety, sweating, flushing, hot flashes, mental fog, depersonalization, etc, is gone. Here is the message from the other Labs sufferer from "The Dizzy Lounge." Please get yourself tested by IGENEX...they will send you a free test kit. No other test is sensitive enough. If you come back negative, you can at least be assured you don't have it (although some lymies never test positive as it attacks their immune system and they therefore don't produce antibodies. Be well..Brad ____________ Message below...from JCTinNC on thedizzylounge.com Havent been here in quite a loooong time! Want to thank all of those that helped me in the early days dealing with my vertigo and anxiety symptoms. I have been through a boat load of tests this summer including the evil lumbar punch, 9 days of laying flat!!! I have had several diagnosis this year, VN, Labs, Anxiety, neuro virus, MS, youre just crazy, to I dont know but u'd be a good candidate for a learning school... I finally took my health into my own hands, got copies of all labs done over the last year and decided I need to pursue a Lyme Diagnosis (check out my symptoms in my sig). After FINALLY getting the proper test done, Western Blot serum IgM/IgG with bands, several were activated that were Lyme specific. I see an LLMD (Lyme Literate Medical Doctor) in 1 week! I am appalled at the medical community's lack of knowledge in this area, and all ID (Infectious Doctors) which are backed by the IDSA are taught to ignore chronic Lyme...The ID I saw told me Lyme is not here in NC...The truth is Lyme is all over the entire world, as far as I know, ticks/birds/deer dont know what a border is... MY opinion, if you have been dealing with these type symptoms, you really need to seriously think about Lyme. And you dont have to have all or most of them. Check out Under our Skin on Youtube. OR visit Lymenet.org. __________________ Vertigo spins 12-9-09, unbalanced feeling ever since, ENT diagnosed me w/ VN/Labs 2-18-10. BUT Other symptoms began to follow, internal vibrations, hi BP, low b12/iron/mag, cracky neck/spine, muscle twitching, buzzing in brain, lesions on brain per MRI, nystagmus, headache/pressure, numbness on arms/legs, ear pain/fullness, OCD, pain in hands/feet, all kinds of tinnitus, TMJD, air hunger, 'lead suit' syndrome, Insomnia, mood swings/rage, extreme visual disturbances, muscle pain in arms/chest/legs, heart PVCs, tachycardia, myoclonic jerking, painful lymphnodes (esp around cycle), smell sensitivities, severe cognitive probs... ALL of these symptoms changing or moving around on a wk to wk or monthly basis...FINALLY diagnosed with Lyme Disease Sept 2010 with a Western Blot test. |
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Hi Guys, I have been reading most of the posts from the start to the latest on this excellent site and find it a great help and comfort. I have many of the symptoms and experiences of the contributors. My battle with labyrinthitis started about 8 weeks ago. Initially I seemed to pick up a virus that gave me a slight head cold and a stiff neck for about 3 days, nothing really significant. As the days went by I noticed I was becoming more unsteady on my feet and started to experience the 'foggy feeling' that so many have described. other early symptoms included: One particularly bad day when I felt I was suffering with the flu and just collapsed on the sofa, a vice like pressure on my head, an aversion to bright lights, strangely I felt uncomfortable with some patterns (it's autumn and the fallen yellow leaves seem to upset me, weird in know). I went to my GP and he diagnosed labs and predicted it should clear up in a couple of weeks, I wish. Currently have another visit scheduled with him next week. My disorientation has slightly improved but now I suffer strange head pains/aches some at the back of my head others to the front and side. Some are fleeting others more longer lasting and some are just a sensation of pressure or movement on the skin. Does any of this seem familiar? Would be good to make friends with anyone who's going through something similar. Graham from Oxford UK |
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Hi to everyone. It's been a while since I checked in here. We have a few newcomers..welcome. Some of you have been feeling better while others are going through bad times again, like me. Brad- I'm from a small town about 60 miles north of Milwaukee, Wisconsin in the United States. I thought about getting tested for Lymes too because I now have the internal vibrations in my chest area and muscle pains in my chest area. I see my Physician's Assisatant Dec 9, I'll ask for it. Thanks Ellen, Gloria and Tina for responding. I feel as if it's going to take me a while to get better or maybe be like this for the rest of my life. I haven't have time to enjoy my baby girl at all because I'm concentrating on getting better. I feel as if I did everything in the dark just to make it through each day. Take Care all, Kia
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Hi Graham, Welcome to this site, but sorry you have needed to do so! I'm one of the more long-termers on here, but please don't let that discourage you. I did have a very bad viral attack (chest infection) which ran concurrently with my dizziness at the end of June last year (09). The chest infection alone took me a good couple of months to get over. So I am not surprised that I have not been one of the many that do get over this within a few weeks or months at the most. As my doctor said, this is one of the most unnerving and debilitating illnesses, because people wonder what on earth is happening to them. All that you describe is typical labs symptoms. As this illness impacts on the other nervous systems in the body - people can experience so many other side effects that you would not associate with an ear disorder. Typically, apart from dizziness or swimmy headed, blurry vision, aversion to lights or fabric patterns, head tightness, foggy headed, ear pain, ear fullness, numbness anywhere, tingling sensations, stiff neck muscles or shoulder or anywhere for that matter. Zappy head pains on your head, headaches or head pains pretty much all the time. Sore head, especially at the back. Feeling on edge or anxious, anxiety, shaky, nausea (big time with me). I'm sure I may have missed a few Graham!! This site has been a saviour for us all I would say. Because symptoms are numerous and individual, not many GPs understand if you go and tell them how you feel. Many put it down to anxiety issues, or, as in my case, because I am a migraine sufferer (questionable). At the beginning because the head pains were so bad and like nothing I had experienced before, I went to the hospital. They sent me away with a tension headache diagnosis!!! I wish! Much of what i have learnt if from others on here who have imparted there own feelings and symptoms. Many of the aches and pains and odd feeling I have had, I would have thought would be down to something else had not someone on here said they, too have had the same. You do sometimes feel that you have so many illnesses going on. That or, as with me, I feel I have become a total hypochondriac!! Spent so much money on alternative therapies, supplements, snake oil LOL!! None of it has done any good. So just in case you may be tempted! Get into some VRT (Vestibular Rehabilitation Therapy). Speak with your GP. They will probably refer you to an ENT consultant who will refer you on for therapy. These as you may or may not have heard of are a set of very specific head exercises to retrain the brain to compensate your balance. Many of us here have had MRI scans to rule out nasties - all part of the procedure to diagnose people with a vestibular disorder. Many people recover within a few months at the most. It may linger for a little longer of for a few of us longer than that. All of that said is we do function daily, although I did give up my job. I do most things, know how to cope with the times and days when I feel not too good. You must be positive, you will recover but do remember unlike bad flu, the recovery is not linear. You peak and trough all the way through. My analogy is a game of snakes and ladders. I go up a snake, a big snake sometimes (!!)l, but then can come crashing down a long ladder LOL!! Try and keep moving and doing normal activities as this will compensate the brain more quickly. The down bits aren't good, but never as bad as when it all came on. So, again, keep heart. Anyway, hope not to have gone on too much Graham, but do vent how you feel on here - everyone so understands. I'm off this Friday to Guildford Hospital for some very comprehensive balance tests. I had something called the Caloric and ENG, but they are going to do some others at Guildford. Better take the sick bag I feel!! Good to hear form you again Graham. Let us know how you get on. Hope everyone else is progressing in the right direction. Love and thoughts, Gloria xx |
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Hi everyone, Just thought I's pop on today to see how everyone is doing. Looks like some of the recent blips are slightly improving (fingers crossed) Graham Looks like you have classic labs symptoms its funny when someone new posts on her we all report the same symptoms & can all relate to most of each others 'ailments'. It really is a horrible condition, Gloria knows that more than most but as she says we all find a way of coping & when we look back to how we were there have been some definite improvements but it really is 2 steps forward 2 steps back or Snakes & Ladders!!! Push for a referral to ENT then hopefull they will carry out necessary tests & maybe refer you for VRT this will help to retrain the brain to compensate for the damage caused to the vestibular (balance) system. Gloria is right if you can keep active & at least walk every day this will all help. Mine has been 10 months now but it is improving & has been real peaks & troughs. yours could still repair itself quicker my VRT therapist told me that 100 people will get Labs, 80 wil recover within several weeks but 20 will take much longer so lets hope you are in the 80!!! Just keep positive & know that it will go eventualy :) Well have had a funny week still think I'm improving but am having a normal 'monthly build up' blip although not as bad as some months. Getting the headaches again now after 2 weeks of not having any but still positive it has been worse than this before. Sometimes getting the spinning in bed & woozy feeling when getting up from sitting but again not as bad as it has been, so taking that as a positive & thinking I'm just slipping slightly down a short ladder. Hope everyone is doing okay. Shirley how are you? Jemma hope you are still improving. S & Ish nice to hear from you. Positive thoughts to everyone Claire x |
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Hi Gloria and Claire, thank you for your kind words of encouragement. It's so reassuring to hear that my symptoms are not unique and that you guys more than any others understand exactly what this disorder feels like. I will keep in touch. Best Wishes to you both, Graham x |
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Hi all Graham welcome to this site, I see gloria has given you loads of great info which I can only echo. It really does help psychologically to find other people with the same symptoms. Hopefully you won't be one of the unlucky long sufferers! Well I have slipped down a snake since my last post (is it down snakes, up ladders??). After a few good weeks I seem to have stepped back a bit but it's only to be expected i guess. After all this time I know the score and just got to hang on for some better days. I am not terrible but balance not great, swirly head, tired etc. Still doing bits and pieces but nothing too exciting or strenuous. Tomorrow I am going to a Relaxation and Exercise Group which the hospital put me in touch with at the local leisure centre. I am hoping the rehab trainer might have some knowledge of vestibular disorders, but maybe that is wishful thinking considering that most Consultants barely seem to know anything about them :-) Claire keep plugging on, you will get there. Gloria good luck with the balance tests, I hope they give you more insight. Ish, Ellen, Tina, Kia, S and everyone else - hope you are all ok? Has anyone started thinking about Christmas preparations/plans? Love Jemma x |
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Hey everyone hope you are all still steadily improving without too many blips along the way! I'm feeling extremely low today. I feel like I'm never going to beat this horrid illness. A few weeks ago I had a great 3 weeks, my balance was a lot better and I only had a slight swirly head. I really thought it was the start of my recovery. Well how wrong was I!! The last 2 weeks have been bad again; swirly head, bad balance, headaches, neck pain. It all started when the docs started messing with my hormone levels. First they took me off the pill for a few weeks which upset my cycle then just when my body started to get used to it they put me back on it! I don't think this has helped with the dizziness at all. I was also suffering with my neck so I went to an osteopath and I think he also made things worse. I'm not going bk! I have been doing a lot of walking on uneven surfaces and in the dark as I read this would help my brain retrain but it seems that everytime I do this I wake up the next day really dizzy. Is it just my brain learning or am I having a major relapse? I don't know about you guys but the change in weather seems to have brought back the pressure in my head and the bridge of my noise. Should I really be getting this 6 months into this? When my dizziness was really bad in the first few months I could physically feel something shifting in my head. Almost like a spin dryer. Anyone experienced this? Well I have had that a little over the past few days and I'm so scared that I'm facing a major relapse! My gp thinks I need to go on a mild anti anxiety tablet because he thinks I'm a nervous wreck! Lol! He is right, I am! I have been so reluctant to try these tablets but the way I feel right now I think I may give them a go. Graham - this site is wonderful! I have had so many symptoms that have scared me to death but I have come on here and realised that I'm not alone. Try and stay as active as possible. I stayed with my parents during the first few months and did very little, I was too scared to leave the house. I really think this is why I am suffering 6 months down the line. I wasn't active enough at the start. Keep strong! Claire, Gloria, jemma and everyone else - hope you are all well. Love to you all Ashley xx |
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Hi all, Jemma - sorry you've slipped a little. Got me thinking - is it up or down snakes or up or down ladders?!!!!! (Such along time since I played the game!) Anyway, we know what we mean LOL! At present I have the cold from hell. Sore throat, cough and to top it all have put my back out. I think it was to do with those ridiculous shoes I wore at the wedding, as lovely as they were. I should have reminded myself I'm no Cheryl Cole or whatever she calls herself now!! Last week when I was so achey and really swirly headed should have been my alarm bell that a virus was afoot. Strangely though, now the cold has come out, my head has eased off a little. Good luck with the relaxation class Jemma. Let us know if you felt that it helped any. As for Christmas, I know we have a house full and I have loads to do, but have no enthusiasm to get started yet. Maybe visiting your website Jemma and do a bit of on-line shopping. How is that going by the way? Also, don't know if you have looked at a new range from Holland called PIP Studio - it's very Cath Kidston which I like. Fab stuff. Whole ranges of things from porcelain to bed linen, stationery and handbags. If you go onto their website it is for trade only. You can send off for a sample pack. Really popular down here. It is in John Lewis and Bentalls, another big retail store as well as a couple of internet sites. Maybe a good addition to your site? Let us know what you think. Graham - hope you are on an even keel or even better, really progressing. Sandie - if you're looking in - how are you these days? I'd love to hear 100%!! Claire/Shirley and those Jemma has mentioned (I'll have to go back to my name of the Sharp Blue Crew again I think!!) Hugs, Gloria xx |
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Hi all, I think I'm on some sort of plateau at the moment, no real improvement or deterioration. The zappy head pains are still there with vengeance (one woke me up during the night and then it was gone), the vague dizziness comes and goes throughout the day and I'm always tired particularly as the day draws on. So I'm hoping for a ladder to appear sometime soon, please, I don't mind if it only has a few rungs Sorry you found a snake Jemma :-(. Hope you feel better soon. Gloria I couldn't imagine another virus on top of this. You long termers have my admiration. Take Care Graham x |
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Sorry I think I started the Snakes/Ladders debate I mentioned slipping down a ladder, should have been a snake. Good thing is all that thinking about it we did, took our minds off the dizziness for a little while :). Managed 1 1/2 hours at the gym today yippee!! will probably pay for that tomorrow when I try to crawl out of bed. Not a bad day so far usually starts kicking in about now. I know what you mean about that Graham almost impossible to imagine going out in the evenings!! I am out though on Sat night to Delia Smiths restaraunt at the Norwich City ground. Maybe she'll be there! my girls were lucky enough to meet her once at the football & she was lovely. Love to you all (The sharp blue crew) much easier Gloria Claire x |
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OMG who mentioned Christmas – every time I hear that my stomach lurches lol. I am just not prepared. Graham - nice to meet you and sorry to hear you have this dreaded condition. Your symptoms do sound like classic labs and I can only echo what everyone else has said on here. Hopefully you will be one of the lucky ones and your recovery will be quick. I realised today that I have now had this for a year. My one year aniversary was on the 2nd November and if I had remembered I would have gone out and celebrated .. NOT !!!! Jemma - so sorry to hear you have found that nasty slippery snake. I really hope it is short lived and you will be feeling better soon. It does amaze me how we learn to carry on when our head is all over the place. Gloria – I am well impressed with you wearing ridiculous shoes at the wedding. For me anything with any kind of heal makes me feel off balance so I am stuck with wearing flat shoes for the time being and being short I hate it. Oh how I would love to wear my heels again lol. So sorry you have caught a cold – that's something I am dreading. I went to my granddaughters nursery today and the lady next to me kept coughing and sneezing – I couldn't get away from her quick enough – might take a Lemsip tonight just to make sure lol. The funny thing is before I got this I could go a couple of years without catching anything. Claire – I do still listen to the relaxation tapes, I am still to get to the end of them as I always fall asleep – see they work lol. The gym has gone out of the window for the time being but I will definitely get back to it when I get a bit more energy back. You are so good for walking 3 miles in 1 hour – I really wish I had your stamina lol. I have started using my Wii Fit again – something I have not used since I got this. I used the balance board and did some of the games on it and also some yoga. At the end my balance score was 96 per cent and believe it or not, higher than when I had previous done it dizzy free !!! All in all I have improved a bit. I am still suffering the tiredness, woozy head and visual problems and like you Claire the laying down spinning. But I am seeing an improvement and fingers crossed this blip is starting to pass. Hope I haven’t jinked myself !! Love and hugs to everyone Shirley xx |
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Well like you Gloria I have caught a nasty cold, looks like I spoke to quick yesterday - always seem to jinx myself lol. So far so good though - no real change so hoping it will last. |
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Hi All, I seem to have reached a plateau that I don't seem to improve on. At least it hasn't been backward in the last week or two. I have more ear pain the last few days (both ears) and moments out of the blue where I have a strong dizzy spell, but in general it is about the same. Still vaguely, slightly dizzy 24/7, and floating bobbing up and down on the bed, eye floaters n stuff. But it's ok. @Graham, welcome to the page, sorry to hear someone else is suffering with this. It's funny, until this happened to me I'd never even heard of this. I have had all the symptoms you described and more. I'm about 4.5 months in and don't have the pain as much any more but still have the dizzy, and visual symptoms, as well as a general feeling like I'm a bit out of it or drunk or something. Don't worry it looks like these are all labs symptoms. @Brad, I'm looking into being tested for Lyme. Up until recently I was living in Germany and then Ireland for the past 4 years, and I did a lot of hiking and outdoors stuff, so it doesn't matter if they say it's not in Australia bc if I picked it up it would have been in Europe. Unfortunately there are no LLMDs in Australia and all the doctors I've mentioned it to don't know anything about Lyme and just try and talk me out of worrying about it. My neurologist said that even if I did have it I probably got it 2 yrs ago now (when I was hospitalized with a very bad unknown virus, which was the actual first time I ever had a dizzy spell and was having very minor, very brief moments of dizziness since then until this happened) and so it is too late for treatment anyway! I'm sure I heard that people in the US are treated after having it for years and they recover. So I'm really not sure how to get it checked from here, and then treated. I looked up a pathologist here who specializes in tick borne illnesses, so I'm going to get a referral to see him. All this difficulty and I probably don't have it, but I will feel a lot more relaxed if I could just cross it off the list. Thanks for your info. @Shirley @Gloria @Jemma Sorry to hear you're not doing so well. I can relate to the snakes and ladders feeling. The step backs are SO disheartening. For those of you with colds, lots of hot toddies should do the trick:) @Ash, sorry to hear you've had a relapse. I've been off the pill this whole time and I really think I need to go back on it because my hormones are all over the place. Do you think being on the pill has made you worse? You said you are worse because they took you off then on it again. Did you get worse when you went off it, or back on it? Cheers, Ish |
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Nice to meet you to Shirley and thank you for your message. I'm hoping that I might be a lucky one, strange to say that when I feel so low. Oh and not so happy anniversary to you. Things felt a little better this morning, no head pains during the night and the balance was promising and then just after lunch it all went wrong as I went for a walk during my lunch break, a snake appeared (sorry to continue the analogy but it does seem so appropriate). Anyway I thought I might try Ginkgo Biloba, you know desperate times and all that. I won't be holding my breath for an improvement though. Finally, I fell asleep at 7.30pm on the sofa last night and I used to be such a night bird! Take care fellow sufferers. Graham X |
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Hi all, Shirley - so lovely to hear from you. It really stinks when you think you are seeing a brighter phase and then go down hill with a vengeance and to take ages and ages to come back up again. The cold isn't going to help either alas! I've got a hacking dry cough which is splitting my head and really making it more dizzy. YUK YUK! Ish - and you sounded like you were doing so well. With regards to the Lyme stuff, to be honest I'd never heard of it until when I first went to see a private neurologist, the first thing he did was this huge blood test - cost a fortune - for about 9 different things including lyme. All came back negative. If my neurologist could request such a comprehensive blood test, you should be able to get the same Ish? Ash - unfortunately, what you are experiencing is quite normal. As I said to Graham this thing peaks and troughs throughout whatever period it is going to take to get better. It is the worst thing to feel you've turned a corner and for it to regress again. Take heart, it will get better. As I've said before on this page, a neighbour's friend had this and it didn't just go, it faded gradually for her over a couple or so years, the better phases getting longer and longer in between the bad bits. I did the anti-anxiety tablets for a few months and they did help. Just me not liking that sort of medication and came off of it. That said, lately I feel I could go back on it again - it dampened everything down. Graham - you sound as if you are working through this? Brave, brave man! How do you cope? Some of us on here have done the Gingko route. You need to try personally to see if it helps with any of your symptoms. As I said, I have a whole health shop of products in my kitchen. The ones I do still take are the vitamins - good vit B 50, vit C, vit E. If you can take magnesium, that is an excellent muscle relaxant and helps with headaches. Mag citrate 200mg twice a day, but for me it gives me an upset stomach. So have had to stop that for a while. Know what you mean about the night-bird thing. Comfy slippers and the telly for me these days - can't even drink wine anymore. Had a few sips but the after effects are not worth it. Graham do you have a family at home as well? Whilst my family have been huge support but sometimes it is difficult for even them to think you are still not OK, because we all look fab from the outside! Claire - you sound as if you are going 'up the rungs' at last - a bit more than a few weeks back! Friends have already given us dates for a couple of pre-Christmas parties! OMG hope to be OK - cannot believe I am writing this a year later at the same time of year. At least I know I have progressed loads even though still not perfect. Maybe next year?!! Going back under the duvet with hot water bottle, tissues and cough mixture!! Such an exciting life!! Love to all, Gloria xx |
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Hi all Gloria - thank you for your kind words. I feel so down again at the moment. The weather here is awful and I feel this really makes a difference to my dizziness. Are you effected by weather changes? I find that when it is cold, wet and windy, the pressure builds up more in my head and my ears hurt. It is awful! I am just trying a nasal spray to see if that helps. You know what its like; try anything to ease this hell!! So sorry that you have a cold right now. I'm stocking up on the vit c!! You mentioned that you tried anti anxiety meds. Can you remember what they were called? My doc has prescribed me a low dose of citalopram. Stupidly i have read the side effects and am now petrified of trying them!! I know I should because I've got it into my head again that if I go out I am going to experience a severe dizzy attack and so I daren't leave the house without someone with me! My work have been wonderful and have said that they don't want me to think about coming back until the new year but at this rate I don't think I will even be ready by then. I am so scared to do anything in case it makes my head worse. I had a dizzy spell the other evening then refused to go out for a walk with my boyfriend because I was so afraid it would make it worse. Ish - when i originally came off the pill mid cycle I had a good few weeks so I thought it helped but now I think it was just because I am always at my best mid cycle on the pill or not. When it came to my period I had the monthly from hell! The dizziness was bad and the PMT symptoms were awful. It was like been a teenager again! Lol! I have just started my pill again and the doc said that if I have a good couple of weeks again mid cycle then I know the pill does not affevt my condition. I will keep you posted. Jemma - How are you finding the weather changes up here in the North? They really seem to effect me. I have started my Xmas shopping but to be honest I am not looking forward to Xmas. This will be my first Xmas with this awful condition and I know it is going to spoil it. I am already turning down party invites. It depresses me so much because I love Xmas :-( Hope everyone else is hanging in there. Hugs Ashley xx |
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Hi all, Gloria, I don't consider myself as brave at all, my condition doesn't appear to be as severe as many on this site, all those guys have all my sympathy. But it does start wear you down as the days and weeks go by. I've just got everything crossed that I might be a short term patient, but time is starting to go by. I do have a family at home and like your situation they are supportive, but it must be difficult to understand the condition unless you have experienced it first hand. That's where this site really comes into it's own, we are all in the same boat (perhaps a boat analogy is not really appropriate, I feel queasy even thinking about boats). Thanks lsh and Ash for your supportive comments. Bye for now and take care Graham x |
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I forgot to ask, How many of you suffered from or still suffer from the short lived head aches/pains? They range from split seconds to a maybe 20 seconds and then they are gone and I get them predominately at the back and side of the head and around or over the eyes. Any idea what they are? Are these the zappy pains that sufferers describe. Sometimes I'm not sure I actually had one it's so quick, did I imagine it? Thanks Graham x |
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Hi everyone Sounds like everyone has the winter blues. Ash I can relate to you facing your first christmas with labs. This will be my second one and I hope it will be better than last year which was really depressing. I still wont be going to any parties or drinking alcohol but i hope it will compare favourably to last year then at least i can believe there is improvement. When did you start with labs/VN Ash? Ash the weather here is so windy at the moment, last night I got next to no sleep because our tv aerial was hanging off and banging on the window and our fence was blowing over. I tried to sleep on the sofa in the end. Needless to say i feel grotty today and much more tired which makes the lightheadedness worse. YUK! I too can relate to the hormone thing. I seem to feel better mid-cycle then go worse again the week of my period. I definitely feel more tired at that time which makes the swirly head worse. Gloria hope your balance tests are going ok. The online shop has started slowly. Only a handful of orders but we are still trying to advertise it more. I looked at PIP studios, thanks for letting me know i had not heard of it and it looks lovely! I have sent them an email but i think they may only sell to shops and not online businesses, it's worth asking though. I wanted to add that like Shirley and Gloria i dont like wearing high heels anymore. I used to wear at least 3 inch heels all the time but this year i have bought 3 pairs of flat shoes because it just makes balance harder wearing high heels. Graham I cannot say I personally have experienced the zappy pains but i have read loads of other people have and it seems to be all part of this. You might want to try pushing your GP/ENT for balance testing and an MRI scan just to rule out anything else now you have had this a few months. Love to all Jemma xx |
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Graham - just popped on to quickly say that I have had the zappy head pains especially at the beginning of this. I did get them again after this recent setback but they have gone now. For myself I feel the pain relates to my neck, it seems that whenever I get the neck and ear pressure I get the head pains. I am sure they wont last long. Good advice from Jemma re getting an MRI scan - if nothing else it will put your mind at rest. Gloria - Hope your feeling better. I have been really lucky that my cold hasn't affected my ears and so far so good. Well I am off to fight the shops - going to try and get some christmas presents .. oh joy lol. |
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Hi all, Nice to see you all on here although not nice that you are having to come on here (if that makes sense) I had my teeth whitened at the dentists yesterday, what was i thinking?? over an hour laying back in a chair unable to move!! Oh well I made it had to sit more upright at one point, I bet they thought I was mad when i said I felt too dizzy to lie back!! all in the name of vanity but looks nice!! One for the girls- As some of you may know & know yourselves the whole dizzy stuff is very much lead by the our monthly cycles, i worked out a long time ago that mid cycle was my best time. i am now on the horrible week but good news!! This time has been so much better than any other month for ages. I am for some reason having a 3 week cycle-not fun but usually I am much worse the week before my period & this time was a hughe improvement. I dont want to jinx anything but maybe jusr maybe this affliction is saying a slow goodbye after 10 months. i really hope so & it means that there is some light at the end of this long dark tunnel fingers crossed. Graham at the start of my condition I had all the wierd head pains & in my eyes & forehead. Sometimes stabbing & sudden. This was when I was convinced I had a brain tumour. Feel silly saying that now but at the time its all I could think about!!! I had an MRi which ruled that out & helped my peace of mind, thank goodness. Although I went to see an ENT specialist privately as the NHS had a 3 month waiting list!!! As I had insurance I think the specialist thought we may as well use it just to put my mind at rest. Shirley/Gloria bloody colds we really dont need them in our condition it really puts everything back. i find myself literally stepping back when people say they have a cold & if someone sneezes near me in the supermarket then I make a quick about turn in the other direction. Dont even care if anyone notices. i take berrocca every day & have done since the beginning of this year. Have only had 1 cold so far this year so maybe it helps? Anyway off out tonight & will be wearing high boots (Gloria,Jemma) so hope I dont topple over!!! Really hope you all see some improvements & i agree with whay some of you said about the weather the cold?wet weather makes the dizziness much worse this is caused by the barometric pressure & have read tha this can cause symptoms to be worse maybe thats why we have the winter blues. Roll on Summer Love to you all Claire x |
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Hi all, Well, I'll start from the beginning. My wife and I just had our first son late last year. Everything was going so perfectly with me working and coming home to spend time with my family. Then my life started to change. In mid-June of this year, I was struck with a random 10-15 second episode of vertigo. I was carrying the baby diaper pail and fluffing out a new garbage bag to put in it, and I got really dizzy and sat/fell on the couch. It scared the heck out of me and really brought me into panic as I had no idea what vertigo even was. All I remember was sitting on the couch with the room spinning begging my wife to help me and to please make it stop. It ended as suddenly as it came. When I calmed down from this, we headed to the Urgent Care Clinic to see what was wrong with me. The Nurse Practitioner there checked my ears and stated that she saw some fluid in my left ear and diagnosed me with Labyrinthitis. Now I had no idea what Labyrinthitis was, but she told me that it can take up to 6 weeks to go away and to go see an ENT or neuro if it persisted. For the next 2 weeks or so, I felt pretty off balance and dizzy, but was able to make through work and my daily chores. After that, I was pretty much perfect for the next 2 months. Around labor day weekend, I started to feel really funny... almost like I was in a brain-cloud. I went to my GP, and he was worried, so he set me up an appointment with a Neurologist. That appointment wasn't until another few weeks, so I tried to relax in the meantime. After a few days, the brain-fog slowly descended into that uncompensated dizzy/balance feeling from my immediate post-"labyrinthitis" vertigo. Since I had some time before the neurologist appt, I went to go see an ENT that day. The ENT did a hearing test and a few basic balance tests (walking in-place w/ eyes closed, dix-hallpike, etc.). My hearing test was perfect, and my balance tests showed me being a bit off. He told me to wait for the MRI from the neuro before he would proceed with any kind of diagnosis. A few weeks came and went with no change, then I had my neuro appointment. He could find absolutely nothing wrong with me through all the odd neurologist tests, but he still sent me in for an MRI just in case. The MRI was a brain-focused MRI primarly looking for MS or brain tumors, and the results were all negative (thank goodness). I went back to my ENT and reported the results to him. He could still sense something was off with my balance and claimed to see some slight amount of fluid in my left ear. He then suggested it was some type of "atypical menieres". He was very unsure of this diagnosis because I didn't really have any symptoms that would lead to it other than dizziness. Anyway, he told me to give it weeks and come back if there were any problems. The very next night, my left ear suddenly developed a really high pitched tinnitus. Not extremely loud, but just like a squeal sound. This tinnitus has since not gone away and is present with me 24/7. The following morning we were scheduled to go on a family vacation to Arizona for a week. The timing could not possibly have been any worse. My crappy off-balance/dizziness feeling hit its peak then and I was miserable for the first few days there with ear-fullness and the tinnitus. I made it through the week having as much fun as I possibly could, but at the same time I started reading other dizziness forums who suggested seeing a neurotologist. I made an appointment while I was on vacation to get on the waiting list so I could see him when I got back home. I got back okay and have slowly been feeling a little bit better week by week. I even tried to do some homegrown VRT exercises just to see if that helped me. I think it did, but I felt like I had hit a wall at some point and was not 100%... more like %85. Recently I had my appointment with my neurotologist, and he did some basic tests and asked me several questions. He signed me up for all the official balance tests on Dec. 1 along with another MRI which will focus on the brain stem. His initial guess at a diagnosis was either "early menieres" or lingering vestibular neuronitis because I have no discernible hearing loss. After telling me this, he lastly did a dix-hallpike test on me and noticed some Nystagmus on my left side. Not too sure what this meant for him, but it was after seeing this is when he decided on the MRI and all the testing. He didn't seem to think my sole small vertigo attack was related at all to labyrinthtis as it usually causes vertigo that lasts for hours or days before getting better. The initial labyrinthitis diagnosis seems to fit my current symptoms. I refuse to believe the "early menieres" mentioning as I have experienced none of its symptoms, really. In a nutshell, my symptoms consist of: 24/7 high pitched tinnitus for the past 2 months (some days are louder than others), ear fullness every now and then, and pretty much slight constant imbalance/dizzniess. The dizziness is much worse at night when I am tired and in the morning after sleeping. I've noticed that I have to sleep with two or three pillows and keep my head looking up at the ceiling. I get really dizzy (but not vertiginous) if I turn my head to either side. The dizziness feels much better around the afternoon, but I know when I get home it slowly turns to crap until I fall asleep. Over the last few weeks, I have learned to say screw it and stop being depressed and just concentrate on getting better. I am living my life as I normally would (almost). I think back to the peak of this thing back in Arizona, and I am feeling MUCH better since then. It's just been a long, slow ride. I'm still not sure if the very brief stint of vertigo I had back in June is even related to this, as I seemed to get over it extremely quickly. If you take that out, then I have had these lingering symptoms for just barely over 2 months which I gather isn't too long for most people. Anyway, sorry for the long rant. It just feels good to get my story out. I very much appreciate your time and thoughts!! Thanks, Chuck |
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Hi Chuck, Sorry to hear you've been suffering, but I just thought I'd let you know that your symptoms sounds very similar to mine, and I have been diagnosed with atypical early Meniere's also. I had been very occasionally having the slightest dizzy spells lasting only a few seconds, every few weeks, for about a year before all this started for me. It was so slight I thought it was anxiety, or a blood sugar thing. Then I got the tinnitus, as you describe a high pitched squeeling sound, and ear fullness, and about a month after that my constant 24/7 vertigo started. It has been 4.5 months for me and it has improved a great deal, but is not quite gone yet. I also still have perfect hearing, and so they told me after I had all the tests done that they think it is early and very atypical Meniere's, more like a labrynthitis episode, but may recur in bouts. I'm still hoping they've got it wrong and once I'm completely healed it never comes back, but you never know. I do have an old friend who contacted me when she heard about what had happened to me and told me she also was diagnosed with atypical Meniere's. Her vertigo progressed much the same way as mine and how you describe yours, with the tinnitus and ear fullness, but she says now, after 4 years, she very rarely feels any vertigo, but when she does, the vertigo, brain cloud, and nausea (I don't have nausea) come and go for much shorter periods and are much much milder. The only symptoms she always has are the tinnitus and ear fullness, and you get used to that. She says she is much better now than when it first happened and the vertigo does go away. I was very depressed when they first said it was Meniere's but she made me feel much better about it, and gave me hope that if it ever does return after this clears, it will be mild and for a much shorter duration. I also read someone else on this message board from years back that said they had a diagnosis of atypical Meniere's, and had labyrnthitis like episodes, but each time they had an episode it was for a much shorter period each time. All this gives me a little hope that it's not so bad, it will clear up, and it will hopefully be milder if it ever does return. I just thought you might find this information helpful, although you seem to be handling it all very well anyway. I wish you the best of luck with it. Please keep us all updated as to how you progress. Cheers, Ish |
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Hi Chuck, I just want to note that when I say 24/7 vertigo, I mean imbalance/dizziness, not rotational spinning vertigo. I have never experienced that. At it's worst my vertigo has been more like the ground was moving or rocking, and also a sense of dizziness or swirly head as they call it on this message board:). |
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Ish, Thanks for your input! Meniere's is an idiopathic disease meaning that doctor's have no idea what causes it. It can only be identified by the symptoms. You and I have not had any symptoms at all related to what could be Meniere's. The symptoms that it causes are episodic in nature and quite debilitating. Ours are not episodic at all. Heck even the tinnitus associated with it is supposed to be a low pitch roar which gets worse with your dizziness. "Atypical Meniere's" is even more of a laugher diagnosis that really implies how little inner ear conditions are understood by most doctor's today. I have no idea what this is, but I refuse to scare the hell out of myself thinking it's Meniere's . The symptoms that I (and you, apparently) have can be caused by many other inner ear illnesses as well. Many labyrinthitis and VN sufferers report the same or even worse symptoms, and many of them have improved and gotten 100% better over time. In all honesty, I don't really care what the heck I have as long as it goes away soon and goes away permanently. Sorry if this sounds like an attack on what you were saying. Believe me, that's not what I mean it to be. Thinking worst case scenario for me when there is no reason for it just drives me crazy. I truly believe that staying positive and being healthy in general will aid our bodies to get over this illness sooner rather than later. At least that's what seems to be helping me! ;) |
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Hi Chuck, I know what you mean. Of course I don't take it personally, I would much prefer that they had my diagnosis wrong as well. My symptoms are a far cry from classic Menieres, so I have had all the same doubts. My neurologist said to me that everyone is different and even people with classic Menieres suffer it very differently from each other and that my bouts of vertigo instead of being for minutes or hours, go for months. Many many people with classic Menieres have tinnitus all the time however. I know someone with classic Meniere's who has tinnitus all the time, but his vertigo is very different to mine. I think there is so much about the inner ear that they don't know that they have to lump everyone into the same baskets even when it seems very different. I did a LOT of research when I was first diagnosed and it seems Meniere's is bandied around a lot and is sometimes used for the classic symptoms and sometimes just to encompass a whole inner ear syndrome that is non viral. I certainly hope it is NOT a strange variation of Meniere's and does not come back. My neurologist did say the only way the diagnosis can really be certain is if it comes back, and if it doesn't it was labs, so I've just been hoping and assuming it won't. If it does I'll deal with it then. For now I'm emotionally treating it like it is a form of labs, so I understand completely where you're coming from. Cheers, Ish |
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Hi everyone Well I have definitely slid down a snake recently. My balance is really off and keep getting lots of feeling of false motion which is horrible. Of course that causes my neck to tense up and ache. Oh its so fristrating. How can it go worse again!!! Welcome Chuck, sounds like you have a handle on this and have researched it a lot. Hope you keep inproving and it does not prove to be such a long haul for you. Claire I wanted to ask you about the tooth whitening. I hav been thinking about this for a while now. What is it like? Did you have the laser whitening? Does it hurt? How much does it cost and does it work? Sorry just really interested to know. Gloria, hope you are ok? How did your balance tests go? Everyone else, hope you are feeling better... Jemma xxx |
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Does anyone else or has anyone else ever had problems while trying to sleep? I have to sleep directly on my back with on 3 pillows at night. I'm normally a side sleeper, so this sucks badly. I don't have vertigo while turning on my sides, but I do feel like I'm getting really dizzy. The odd thing is that I fall to sleep just fine. It's just that I can't ever stay asleep. I wake up at least 2-3 times, and it really disrupts a good night's rest. My PCP gave me some amitriptyline (10mg) which worked, but that stuff knocked me out for like 2 days!! Not to mention the awful headache and other side effects that I got from it. Tonight I am planning on trying some Benadryl instead. |
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Hi everyone, Just thought I'd update. Trying not to jinx anything but I really have seen some huge improvements over the last month :) Even my off days are not as off as before. The progress is so slow twith this thing that I think its easier to gage it month by month rather than day by day or week etc etc. I am keeping my fingers firmly crossed and will only feel confident it is gone when I have had a whole month of no symptoms. I know it so frustrating to be on a blip and just wanted to share some positive with you. I am now in my 11 month with this & am desperately hoping for a better Xmas this year!! Jemma so sorry you have gone down again, just remember the only way is back up though. I think the weather doesnt help & my off days have always been on raint dull days. My tooth whitening was Zoom whitening done in the Dentists chair I wouldnt reccommend any other than with a qualified dentist. a lot of places do it now but having been a dental nurse myself in my younger days I wouldnt trust anyone else to fiddle with my teeth!! It was bleasch on my teeth then light cured 3x 15 min bursts of it. I also have bleach & moulds to keep it up at home. My dentist charged 450 but my friends Hubby is the owner of the practice so I got it for 400. Its funny that not many people notice it unless i ask them & then they just say that they never noticed they werent white before!! Maybe its just me who notices peoples teeth perhaps because I was 'in the trade' once. Anyway i am pleased & I really think that we deserve a little pick me up. Chuck, Sorry you are suffering who knows if the specialists really know what the heck an inner ear condition is & maybe its just easier to give it a name? I often wondered if mine was Menieres but apparently as my hearing test was normal it ruled it out. All I know is I still get a horrible roaring noise in my left ear when its quiet. Drives me nuts but if thats all i am left with from all the other awful symptoms i've been through then I can live with that!! Anyway love to everyone else & Gloria/Shirley thinking of you both x Claire x |
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Hi all, Well have just got out of my sick bed. Really bad cold that went onto my chest. Anyway, just really bunged up with catarrh now, but feeling better. It hasn't done my head any good either, but I'm so used to that feeling now ( how awful to say that!) it almost feels secondary. Welcome, Chuck. I admire your positive and strong attitude. You are quite right in saying how this causes such anxiety because none of us know what we really have got and how long it will last. We all live on each others anecdotal input. I'm afraid having seen tons of specialists etc, I have never really been given a proper diagnosis. So, in my experience it seems it is a time bound thing which can vary for everyone. Symptoms seem to vary across the divide making it appear to be perhaps BPPV, Menieres, or just labs or VN. It is the MOST debilitating and frustrating condition ever. My input with Menieres is that a couple of people I've known with that now have very infrequent attacks - from months and months to years. Also, don't know if it is just the people I know, but they are a little older and women. Me - well, I'm at 17 months, am much improved although I still know it hasn't gone. Like you, try and carry on my day as much near normal as I can. Haven't felt too good lately but that is because of my cold. Certainly not as bad as at the beginning. By the way, re your sleeping position. I had to have loads of pillows for a few months, but am down to 2 now and sleeping fairly flat - not that I've ever slept flat anyway. I've taken Amitriptyline and in fact have just gone back on it to help sleep as I couldn't sleep either. Sorry you had side effects from it. Good luck and keep strong. Jemma - so sorry to hear you've slipped down again. I'm sure it is the time of year, change of weather and all that. I've been really wobbly and 'off' of late. Just hope I get back on track before Christmas. What are you doing? I didn't get to the Balance tests appointment as I was so poorly, but have a new appointment on Nov 30th. Claire - brillo!!! Keep going girl - one of us has to get to the 'winners' spot on our snakes and ladders board LOL!!! Hope that everyone else is fairing well or better - Graham, Ish, Ash, Shirley and all the other SB Crew! Love, Gloria xx
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Hi all Well I can firmly say that I'm positioned back at the start of the snakes and ladders board! Arghhh! I can't take much more. The head pressure is back and the feeling of being back on a boat. What has happened to me? I was getting better. I've been racking my brains thinking about what I've done different. I slipped and jolted my head back and I've stepped up the walking but apart from that I have no idea. Things have been that bad that I've taken one antivert most days for the past week just to try and calm things down a bit. Am I never going to recover? Six months and no relief, I'm so down. Anyway I'm not being positive so Im going to go. Love to you all xx Ashley |
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Just another quick question!... Did anyone ever find anything that worked in relieving the head pressure? I am trying a sudafed nasal spray that I used before but I don't think it really works. I can't believe the pressure and heavy head is back. This isn't normal or a good sign at 6 months is it? Ash x |
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Thanks to everyone. I really appreciate the support! It does help to have a place where people can lean on each other for positive feedback and advice. Some of the other forums out there are such downers. I'm planning on keeping my status posted at least on a weekly basis in the hopes that I will be a success story that other people who come down with this horror can cheer themselves up with. Hopefully we all will! Gloria - I agree that it seems like no one really knows much about these conditions. My problem with the Menieres thing is that it does not cause constant imbalance, most certainly requires at least one or two horrible, horrible bouts of vertigo lasting hours, and like you said it comes with a hearing loss and a roaring low-pitch tinnitus. Probably the only "hearing loss" I have is way above the tested range at around 12khz (the frequency of my squealing tinnitus). I passed the normal hearing tests with flying colors. Gloria - Whatever we all have is frustrating and debilitating. We can only concentrate on getting better and taking it one day/week at a time. The thought of me feeling perfect one day like I used to and playing with my son is what keeps me positive. I know deep down that this will happen. This illness sure has taught me patience, that's for sure!! It's good to know about the sleeping getting better, BTW. Thanks! |
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Hello all. It's been a long time, seems to be a lot of new folk, I hope your stay on here is a short one. As for myself, I'm still recovering slowly, college is going well, but I find it difficult at times. I can control the dizziness using a sleeping tablet called Dalmane, which are basically Flurazepam, it's not ideal and I'm not saying you should take them, but they have always helped me, I take one the night before a busy day and 99% of the time I'll be ok the next day. Stugeron work quite well too, but for a shorter period of time. One of the things I've noticed recently is a numbness on the right side of my hand from time to time, am just wondering has anyone else had this as one of their symptoms? It's kind of worrying with the brain thing, but my most recent MRI showed no change in the lesion, so am hoping its just another symptom of this cursed illness. Gloria, Jemma, Claire, Shirley (and Sandie if you are still on here), I hope you are feeling better than when we "spoke" last, it's such a gradual recovery that it can go unnoticed until you look back at how it was before. I'll be at the 2 year mark in Jan, but 12 months ago if someone told me I'd be sitting down to do exams in University in a few weeks, I'd have laughed at them and then probably fallen over or something :) Take care all, Gary. |
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Ash - sorry to hear you've slipped especially after you were doing so well. It is something that seems to happen to all of us long termers and as everyone has said this condition is not linier. I've noticed with myself it all relates to how my neck is. One of my first relapses was when I towel dried my hair after a shower, the second was when I jerked my neck when I got attacked by a wasp. This last relapse seemed to happen when I strained my neck to look back at someone. Back was the head pressure, headaches, the imbalance, the 24/7 dizzy woozy feelings and also the visual stuff. I am wondering Ash if it has to do with you jolting your head back. I might be wrong but if this is the case it will wear off. Mine did take some time this time round, but I now feel that this last session has passed. It's taken about 6 weeks and this week I have only had one bad day which was Wednesday but yesterday I had hardly any symptoms and felt on top of the world. Today is not too bad either, just a bit of ear pressure, but I have a lot to do so hopefully wont overdo it and pay for it tomorrow. Stick in there Ash and do what you body says. If you feel tired, rest. If you feel you are able to go for that walk, then do so. Just take baby steps until you are back to how you were before this blip. You will get back there. Gloria – So glad you're starting to recover from your nasty cold – I do feel for you. I know I got away with it lightly as it didn't seem to affect me that much, just a pain keep having to blow my nose all the time. Just rest up until you feel better – sending you lots of virtual hugs xx Claire – woo hoo. My fingers, eyes, toes, EVERYTHING is crossed that this is it for you. Like Gloria said we need one of us to get to the winners spot and I certainly hope it's your turn to get there. Throw that lucky dice for us so that we can follow you and get of this 'board'. LOL xx Chuck – welcome, although it's not the best place to be but you will find that everyone on here is very knowledgeable, not through what we get told by our doctors, but from what we have learned from one another and trailing the internet for answers. My GP and ENT docs are absolutely useless and I have had no help whatsoever from any of them. I have also not had a definitive diagnosis. Labs was mentioned at the beginning and my symptoms certainly do seem to be the same as other people with it so I am sticking to that diagnosis. After a year of having this I am actually getting VRT from the NHS, but I have had to push and push for it. It's from a neuro PT so I am wondering how much they know about dizzy people so I am not expecting much. Good luck with your recovery. As said above I have got an appointment with the neuro PT on the 1st December. I know I should be looking forward to it but I just don't have a good feeling about it but am hoping to be proven wrong. Hope everyone else is ok (too many to mention these days) Love and hugs to everyone Shirley xx |
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Ash When I was at 6/7 months I started to notice real improvement in my symptoms then suddenly out of the blue I had a real relapse that lasted for most of the summer & beyond!!! i can honestly say that from about 10 months I have seen improvements & have even had a few days symtom free!! I have improved when I look back a month I can see the change but like I said before I can se it on a monthly basis rather than weekly as it is so slow. Just remember even if you have slid down you WILL get back up again its hard to focus on that wehn you feel so rubbish but its true,honest :) Gary nice to hear from you glad your studies are going well hope you are on the way up & out of this now its been a long time for you. Gloria glad you have managed to get out of your sick bed what a shame it had to happen when you had your appt but at least you have another one fairly soon. I am still avoiding people coughing & sneezing any where near me!! Shirley I really hope you are coming out of your blip too x I still cant help having thoughts about it going then coming back again like it has before but I know I have to be positive. Really hard but at least I have been enjoying life a little more lately even my friends have noticed a change in me (not just the putting on weight again!!) Have been working hard at the gym this week & even managed 2 classes without worrying if I laid down I might get dizzy, which I didnt. Claire xx
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I stumbled onto your page today and I feel so much better that I'm not weird and alone! I've been a dizzy person sporadically for 7 months - the first bout with labs was furious and scary and lasted about 10 days, but the doctor said it's not uncommon and it'll just go away. However, every once in a while it reappears, each time less intense. This past week has been without vertigo, but I'm very dizzy when I lie down and I can't sleep very well and I wake up with huge starts grasping my head and bolting upright...and I'm convinced my tiredness just propagates even more symptoms. When I'm up and about, I'm close to normal, although too much computer time and occasionally TV woozes me out (I never want to see a theatre movie again!). And I've learned to not pop my head up, especially while I'm working in the garden or lifting things. I find I'm hungry a lot more during my bad days and light grazing seems to help keep the daytime wooziness at bay. I find I am very sensitive to weather changes and I think I can attribute all my bad days to weather events. I'm a little worried to fly at Christmas since my ears plug easily now even when I drive down a hill. Any good advice for unplugging ears? I've had mild tinitus for several years, hardly noticeable, but since the first labs incident, it's 24/7 noisy in my left ear now and I'm terrified of getting it in my right ear. Thanks all for for your honesty and sharing your stories! E. |
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Hi everyone, Welcome E - sorry you are suffering too. Having had labs for quite a few months and had the support of everyone on this site; I've learnt so much. There are so many odd symptoms with a balance disorder. Perhaps for you if your blood sugar is low which is causing you to feel hungry and then more off balance. Weather changes affects nearly everyone who has been on here, me included. If it is really overcast and cloudy, that makes my head worse. I'm afraid I can't help with advice re flying because I have been too afraid to even think about going on a plane. A lady called Melissa who was on here a while back flew and used swimmers ear wax in both ears. She said it worked really well. Are you going somewhere nice for Christmas? Anyway, good luck and let us know how you do. Gary - great to here from you. I am now of the opinion you take whatever gets you through this! As you say, you may have to take an odd pill from time to time, but if it helps - great. You are right to say that if anyone had suggested you would be back studying this time last year, at the time nothing could have seemed further from the truth. Absolutely thrilled for you. Even though I am also a lot lot better as well, I still get odd symptoms that I have had before, even if my head is nowhere near as bad as it used to be. So I suspect the numbness is part of it still. I am to go to yet another hospital for balance testing ( I feel it is all a bit too late now). Anyway, the questionnaire I have had to fill out about my symptoms asks about any numbness. So it must be a recognised factor. Onwards and upwards Gary and good luck with your exams. Ash - you poor girl - it is so wretched when you have felt good and think you have beaten this thing when down the old snake you go again. It has unfortunately happened to us all, but each time it happens it is not so bad as the time before. You will get back up there again soon - try not to be so disheartened. I, also, kept thinking what had I done to bring it all back on again. It is just how it is and I don't think there is any explanation. Although for me I always put it down to the fact that when I felt better I would rush around and do too much thinking I was back to my old self again - then wham, back I would go again. So, try to keep an even pace and do rest. It is frustrating especially if you have been an active person. The heavy headedness does get less and less but takes a little time I'm afraid Ash - but it will go. Sending hugs. Shirley - good luck with your appointment - I'm with you, I have all these appointments, but know nothing new is going to come out of it that I haven't already been told or know! Keep improving! I'm still blocked with my cold which isn't helping my head, but am better than I was this time last year - so something to be grateful for! Keep strong and positive everyone - it takes time but we will all get there. Love and hugs, Gloria xx |
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Ugh... this sucks. I had such a 90% weekend last week where I felt pretty much great. It seems that pretty much this whole week I have fallen back down the ladder a bit. Other than the ever-present tinnitus, the crappiest thing this week has been just the spinny/light-headed feeling. Last weekend that stuff was minimal! What comes with this crap is the difficulty in stores (e.g. Target) which I think everyone here is familiar with. So depressing!!! The good news is my tinnitus has actually varied in volume over the past few weeks. It eventually falls back to it's "normal" annoyingly noticeable volume, but the small changes do give me hope that it won't last forever. Also my ear fullness seems to be going away. I used to get it pretty much daily, but now it only occurs weekly at the most. I'm approaching week 12 of this mess, and I just want it to go away soon. I hate my life right now. :( |
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Thought I'd post again, I know it's been a while. I did go through a good few weeks and I really thought I was improving - but then the hangover- like headaches started again along with the swirly off-balance sensations, tiredness, ear fullness and a feeling like I was coming down with something, even had chills and achy tooth. Woke up on Monday with the spinning room and was able to have the Epley manouvere done on wednesday. I'm still feeling off colour but hopefully improving. This really is a case of snakes and ladders. I'm being referred back to ENT in Dec. My balance is really affected by looking up and back and also by tilting my head to one side, also bright lights in shops can start it off, as does the computer - hence the lack participation lately. Gloria - thanks for asking after me. The Verapamil is helping some of the balance issues, I now need to sort the other ones and like everyone else just want to be normal long term. Welcome to all the new followers on the site and of course to the regulars, this site is a great support. Thanks to you all. Sue xx |
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so yeah I'm still left with the dreaded 24/7 vertigo, i hope this will go as all my other symptoms are gone i don't feel lightheaded one bit very clear mind etc i just don't understand these false movement sensations. Ive found the best coping strategy is to ignore this thing, its debilitating yeah but if you pay more attention to it you give it more power and I found I can cope better by pretending its not there. Ive Read many posts from early on this site and the great thing to be gained is those who had the 24/7 Vertigo eventually recovered, a guy called Chris for example i read had it for 2 years before it went so i guess it just takes time for the body to heal itself. Its now a year for me and one week. Anyways I'm looking forward to my vacation in December Traveling to Thailand :) |
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Hi again......I was reading a few more comments on the site and noticed that some of you also suffer with sinus pain/stuffiness/headaches with all your other labs troubles. For many years before my labs started I considered myself "weather sensitive" and would be so stuffed up whenever the weather changed that I couldn't sleep, lying down was unthinkable, and had horrible headaches. 3 years ago my doctor finally found me a great med that rid me of 95% of my headaches and much of the stuffiness......I couldn't imagine going off of it with how supersensitive I now am with barometric pressure changes. It is a tablet called Singulair (in Canada) and is normally prescribed for asthma use, but has anti-sinus properties. It changed my life. I don't have headaches with my dizzies (although I get strange scalp tingles) and I think they might be suppressed with the Singulair. Maybe this info can help someone else out there. Anyhow, I need to stop looking at the computer screen! Reading on monitors and on paper is pretty tough sometimes. Take care! E. |
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hello all of you LAB comrads i'm 18 years old on week 5 like everyone els it comes and goes. i have found like alot of you that just keeping the mind of the fact helps. like being around friends, and family. my parents are flying away for thanksgiving i was going to go, and had the plane ticket in hand then i decided i'm staying home and will have thanksgiving with my friends lol i'm worried about high elevation which i'v noticed myself can make it get more intence. my first week was the worst with virtigo, and not knowing what was happening lol IT WAS SCARY then i found out it was LAB which helped now i'm just having days where my head is all dizzy, hard to think, sometimes i get the EEEEEEEEEE in my ears, and i mostly have symptoms when i wake up, and stare at the computer all day. STAY AWAY FROM THING THAT FLASH. but all in all it does seem to be getting better but i'm not going to keep my hopes up just for the fact i want to be prepared for it if it hits me hard "hope for the best expect the worse is how i see it also Xanax help ALOT!!! i have to get it off other people but i have read cases where it helps even though i dont like the high feeling it take the dizziness away AND I'M NOT A DRUG USER!i try to not take them and let my body fight this itself but its nice to get away from it every now and then. also drink Gatorade, and LOTS OF WATER it helps restore Electro lights and make you feel better. the only good thing i get out of lab is the crazy dreams which i kinda like other than that IT SUCKS!!! but hell i'm just happy this is all i have. and this page really does help cope with it. just to know other people are going through the same thing. I'll keep this page updated on how i do!!! PEACE, AND MAY THE FORCE BE WITH YOU ALL!!! |
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Hi all, Welcome Sean - Sorry you are suffering this rubbish at such a young age. Some consolation maybe that my ENT specialist said if you are young, you will get over it very quickly. Small children can have this, but he said they don't really notice it and is usually put down to a bad cold or ear infection. Also, I'm very impressed with your positive attitude - the best thing to have. Keep the Xanax to a minimum because that type of meds doesn't allow the brain to compensate balance wise. However, when you feel rough and as you say need a break - then do whatever it takes! Chuck - so sorry you have gone back down a snake as we say! Unfortunately, this is such a typical pattern for this nightmare of an illness. Progress can be slow and you really think you are not getting anywhere, but trust me you are recovering. The stores thing also gets better. I found, for me, that going into stores was Ok after about 5-6 months. Don't let that put you off - my recovery has been slower than others. The fact that you say your tinnitus and ear fullness seem to be diminishing sounds like good progress to me. Mine was with me 24/7 until about a couple of months ago. It is very depressing and does get you down, but try and keep a positive mind and say to yourself you are not going to let this beat you. You said in your earlier post about dong some VRT exercises. There has been much debate on here as to whether they help or not. Yesterday I had a follow-up appointment with my Neuro-otologist who said you have to religiously do the exercises for 5-10mins twice a day. They will take many months to get the brain re-programmed for those that haven't recovered after a few months because of the damage done to the vestibular nerve. Obviously, what quickens the recovery is to also be quite active with a normal day to day routine and some exercise whether physical or just going for a brisk walk every day. She said some people get better to a certain level and feel they can live like that, enduring the odd dizzy spell. But their recovery will take much longer as a result. Whilst I have been doing some of the Cawthorne-Cooksey exercises every day, but only once and haven't done them some days. I do think they help, but am still out on whether they are the b-all and end all to a recovery from this, but in the early stages of labs, I do think they are worth doing. Google the above exercises, or look back on this or the last page of this site as someone posted a very comprehensive list of the exercises to do. Better days soon for you Chuck. Keep strong. Sue - good to hear from you too. Sorry you are on a downer. Are you doing VRT by the way. The way the consultant explained it to me yesterday, did make sense as to why we need to do it. Basically, the message was that the nerve damage can take a long time to recover and is quicker to re-train the brain. It still is all a nightmare though isn't it? Hope you see brighter days soon. Also interesting for me yesterday, was the fact that whilst she agreed it was important for my migraines to be controlled, but wasn't the main reason for not recovering. She said it really is a time issue and the more we do to help our recovery the quicker and better. That was me told!!! S - glad you are having some of your symptoms go. As I've just said - time, time, time! Have a great great holiday. I did ask this consultant about flying and she said that flying only affects the middle ear because of the pressure and has nothing do with the inner ear. So if you have a blocked middle ear, with catarrh or fluid then flying can have an effect, but that is overcome with taking a decongestant. So that was good news for me. E- my husband takes Singulair for his asthma - just might pinch some!!! Hope you see improvement soon. Claire/Jemma/Shirley - hope you are all on the up and busy with Christmas plans or am I too early LOL!! Love and hugs to all Sharp Blue Crew, Gloria xx |
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Gloria - Thanks for the encouragement! It really helps to have some "pick-me-up" words. How long have you been stuck with this? Have you improved at all steadily since the beginning? I am having a decent day today. Tinnitus is down along with ear fullness. Spaciness/visual symptoms not too bad. I have often wondered if it would help to take the edge off anxiety during recovery with some sort of SSRI (LexaPro, Zoloft, etc.). I have never taken one before, but I read that it certainly takes your mind off of things. The lower the anxiety, the speedier the recovery supposedly. I am waiting on this until my balance tests next Wednesday, but something tells me they probably won't find anything wrong. It's not like my balance is screwed up or anything. I could certainly pass a sobriety test now (not a few months ago, though). It's just more of a light-headed/spacey feeling. I often wonder if MAV might be my issue, but I have never really had migraines before. I have been doing the migraine diet now for around a month or so and haven't noticed anything dramatic other than the fact that I have lost 20 lbs. Yay! Honestly, though, I'd rather be a little overweight and happy than be stuck with this. Is anyone else working still with this thing? I have hardly had any days off, as I am the sole breadwinner for my family. I am definitely looking forward to the holidays just to get some time off to relax. Oh well, I hope everyone has a wonderful Thanksgiving! That should help in taking our minds off this thing for a while. |
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Hi all Well I am pretty much sorted for Christmas shopping wise. I did most of it online. I can manage the shops ok but I dont tend to spend too long in there as I start going woozy headed. Gloria is the neurotologist you are seeing private or NHS? I am not really under anyone's care anymore but I still do VRT twice a day. I have just started trying to do a bit of keep-fit to a DVD but it has shown me just how unfit I am. Muscles are aching and I can't keep up. Claire the tooth whitening is something I want to have. I have looked into it and I might have to brave a trip to Manchester which would be on the train. I cannot afford £400 but I have found some cheaper places. I guess if I make it to Manchester on the train I can see that as progress although I will be a bit scared!!! EB I can relate to your symptoms although mine are there to varying degrees all the time and don't go away completely. Tiredness definitely makes the lightheaded feeling worse as does being hungry. Shirley hope your appt goes ok. I saw a neuro physio at my local NHS hospital for VRT. She didnt know much about labs/VN and basically just gave me the cawthorne cooksey exercises to do at home which I still do. Let us know what yours says it will be interesting to compare notes... Gary glad you are coping with college and it is nice to know you must be improving. I hope your next scan goes well. Ash I can identify with you. At 5 months I thought I was improving and I had a terrible setback where I was convinced I was going worse. All the crunching sounds in my ears started and I felt really dizzy. I have no explanation why it went worse but after about two months it improved a bit. Ever since it has been up and down all the way but overall improvement I guess. Keep going...are you doing VRT? Everyone else, hope you are ok... Love Jemma xx |
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hello to everyone AGAIN haha so i have a question, what drugs can i take that help the most with little side affects? i dont like being high, or DROWSY ehh. prolly crazy to see a 18 year old say that LMAO a clear head is good enough for me haha or any exercises would be good to know. This LAB is crazy though but i'm not going to let it get me down, and i am glad that i graduated last year otherwise it would be HELL LOL! although at times when i feel really dizzy i just tell myself it will pass and it mostly passes leaving behind the ghostly reminence of dizziness with slight anaxity. from what i'v read who doesnt have anaxity lol but yeah if anyone has any info i would be more than happy to aquire this knowledge, and couldnt be more thankfull PEACE! |
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Hi all Wanted some advice...I have read that damage to the inner ear saccules and inferior vestibular nerve (as opposed to the superior vestibular nerve) does not show on the caloric test but can show on a VEMP test. Has anyone had the VEMP test where they put electrodes on your neck and play sound into your ear? I wondered if anyone could tell me where I can get this done and if you think it is worth having the full ENG testing done as I have only had the caloric so far. Gloria are you having your further balance tests done on the NHS and where are you having them if you dont mind me asking? Jemma x |
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Hi Everyone, Welcome to the new people on the board, sorry to hear there are more people suffering with this. Just thought I'd drop a line to say I'm doing MUCH MUCH better. I thought I'd plateaud a little bit back in my last post, but the pace of healing must have just been slower than before. I am now at the point where I have felt pretty much completely dizzy free for the past two weeks. The only symptoms I still have are the tinnitus (which is much lower) and very slightly blocked ears. Everything else is gone! I'm a little worried I'm posting this too soon, and I'll turn around and have a big setback..but hopefully not. It's been 5 months for me now, which I know is not long for a lot of people on this site. I do believe that the medication I am taking has made a big difference. I noticed an immediate drop off in my headache, head pressure, sinus pressure, and ear ache symptoms as soon as I started taking it and a few weeks later my vertigo started getting less and less. The only relapse I had was when I stopped taking it for a few days, and then it took me two weeks to get back to where I was. I started taking the medication 3 months ago, and the only symptom (besides the tinnitus) I had the entire time up until two weeks ago was the swirly head, but now that is gone as well. If any of you new people want to ask your doctors about it, it is called Sibelium, generic name Flunarizine, and is a calcium channel blocker which is known to specifically target 24/7 dizziness/vertigo. I'll keep posting to update you of my progress even if I don't have a setback. Good luck to all you:) PS - How do you log in with your facebook profile?? Cheers, Iseult [You have to use the “sign in” link just below “Leave a comment” — Rich] |
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Hi everyone, Chuck - I was very opposed to taking anything - I react to a lot of medications and for me I think they just mask symptoms. I certainly held off of taking any antivert type meds because they stop the brain from recompensating the balance mechanism. However, having gleaned so much info with this condition and have now had it for 18 months, I have given in to my ideals regards meds. I now take 10mg Amitriptyline. This is a tiny tiny dose, but just takes the edge of everything and helps you to cope. I cannot take SSRIs because as a migraine sufferer, I do have a special tablet to take for the pain, but it cannot be mixed with SSRIs. So go for it. Many people on here have said how it has been hugely beneficial. I do admire you for working and having to cope with this as well. Be careful though Chuck and ensure you don't overdo it or get overly tired. Easier said than done when you are the breadwinner. My VRT physio said that because with this our brains are having to work extra hard because of getting bad signals from the inner ear, it is imperative to take breaks and rest, otherwise, the brain will become overworked and makes any dizziness worse. With regards to the migraine issue - if you haven't been a migraine sufferer, then it is unlikely to be MAV. Although it seems some doctors like to label a person with that if they have a lot of headaches with this. MAV usually is when you get dizzy with a headache, but then you are OK between attacks. When I look back to the end of June 09 when this all started for me and even though it has been a long haul, but I am much much better. I still get swirly headed, but it is more intermittent now. You do learn to get on with your life with this and after the first couple of months or so, carry on pretty much as normal. There are the dips but do not last as long as at the beginning. A friend of a friend who had this when she was only in her twenties, said it lasted for a couple of years but everything gradually faded until she didn't notice anything. Hopefully, you will see that happening to you in the next couple of months or even sooner Chuck. Happy thanksgiving to you and your family. Sean - go to your doctor and get some anti-depressant meds like SSRI's that Chuck spoke of. They don't hamper you compensation process, but do help with keeping you sane through all this! The anxiety stuff that most on here have experienced is a horrible feeling. I've never been a person to suffer anxiety before. Apparently it is totally involuntary. It is because the brain is panicking our bodies because it cannot read the right signals from our balance mechanisms. Speak to your doc re SSRI's. Let us know how you get on. Jemma - you sound brighter - are you over your little blip? So ridiculous, but I am now under two different hospitals (NHS). The Prof. Luxon clinic in London and my local hospital. That came about because the London clinic disbanded for a while as Prof Luxon retired and I didn't think I would see them again. A new person has taken over so I got my follow up appointment this week. I'm also due to go to my local hospital next Tuesday for balance tests and are going to be a repeat of what they did in London. I'll be such an authority after all this LOL!!! The reason why I'm doing both is because the London clinic has a waiting list for nearly a year!!! My next appointment with the woman I saw won't be until next Spring at the earliest. My hubby said if I do my local hospital they will be quicker with any follow-up. When I went this week they did the Vemp test and the one where you stand in a cubicle which has a moving floor and 'scenery' that revolves around you - weird! You wear a harness to stop you falling. I didn't do at all well on that! She has now booked me in to have the 'Rotational Chair' - as this tests some other p[art of the balance mechanism. She did give it a name, but I can't remember - it was a bit technical! The chair sounds quite medieval and torturous! If you are spun round then I think I will be quite unwell. When I do my VRT, I have tried to turn around 2 or 3 times, but makes me really dizzy. So I suspect that is the part of my inner ear that doesn't work too well. The balance testing in the cubicle gave poor results for me, but the Vemp and hearing test were OK. What is supposed to happen is after the chair thing, I will have had all the tests. That then gives them an idea as to which are the correct exercises for me to do. As this won't be happening in the short term, then I am stuck with the C-C exercises until someone tells me differently. I'll let you know how my balance test go next week and which ones they do. At the end of the day, Jemma, I think it is just more exercises that we do already to be honest, but if I do get some different ones that adress my deficiency, then I might see some quicker progress. If you want to pursue it, speak to your doctor for a referral back to your ENT who will forward you onto your local Balance testing unit within the NHS. Off to do some more Christmas shopping. Feeling a bit more dizzy over the last couple of days. Don't think my body has recovered totally from my cold yet. Must carry on though - onwards and upwards!! Love and hugs to everyone, Gloria xx |
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Hi gloria Thank for that info! it is really interesting to hear about all the tests. If your VEMP test was ok then I guess mine would be too as I think we may have similar damage. I dont think I would cope too well with being spun round on a chair! Like you say though I guess even if they do find exactly what is wrong it is just more VRT so maybe it isnt worth me going all the way to London for that. I would be interested to hear what they say to you though and if there is any new vrt to try. I think I am still having the blip to be honest. I have been a bit worse for the last couple of weeks, noises and fluttering in my ear, more swirly headed and some days of bad fatigue. Like you say though, we know the score and have to hope for onwards and upwards! Good luck with your xmas shopping! xxx |
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Hi All Well I couldnt avoid it any longer I have come down with a cold!! Wierdly i am actually relieved because at the weekend i really started to feel the dizzy stuff coming on again & went xmas shopping with my hubby on Mon & felt totally wiped out after. i even fell asleep in the chair 2 nights running then yesterday the cold symptoms really came out & I have to say it was a relief. now I just have symptoms of a cold like 'normal' people. Still a little woozy headed but nothing terrible. if in a week or twos time I have recovered from the cold & the dizziness is no worse then i will feel very positive that I may be coming through the other side of the tunnel. God I really hope so. Hows everyone else? Gloria all those tests sound very strange best of luck with them i really hope they might come out with some more answers & maybe a cure?? Jemma go for it with the whitening you deserve a little pick me up I'm pleased with mine & also have a follow up kit to carry out at home as & when. i'm not coffee/tea/red wine drinker or smoker so hopefully it will last quite well. Chuck & Sean sorry you are both going through all this too but a positive mind really helps & at the beginning of this I was so negative but after I realised that it WILL go even if it takes a year I WILL feel better eventually & hopefully enjoy my life a little more than I ever did before I had this. Good luck to you both & everyome else on here. Happy Thanksgiving to everyone 'across the pond' Claire xx :) |
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Hey, does anyone know why labyrinthitis can be caused on a flight? I don't understand why i got quite extreme pain in one ear when the plane took off (Is it just that I had a bit of a mild cold when I went on the plane? I had been using in ear earphones before the flight too. I'm never using them again) and over the next week i lost my balance and all the symptoms and it it got worse and worse and was really scary. The first day it started with occasionally suddenly feeling like i was on a lift the floor pushing up and making me almost fall over and have to grab the wall. The next day I was swaying, i was scared i would fall in the road. i was staying in a hotel on a really high floor and every time i took the lift it was like it took the labyrinthitis a step worse. I also went on boats and trains and they were horrible and i felt like i was still on them for ages afterwards. By the end of the holiday the moving and dizziness was constant. I think it made me a bit mental, I was talking rubbish. And anxious for most of it. Also everything looked surreal, i felt like i wasn't really there and i had no control over myself, like a dream. Also I would get like a sleeping attack, is this related to labyrinthitis? If i sat down i wouldn't be able to keep my head up it head felt very heavy, and i would switch off and be like asleep but i could still hear people around me talking, sometimes trying to wake me up but i was trying to open my eyes but i couldn't move for ages. It was like i had no control over my body. I never want to go on a plane again unless i can find a way of making sure it doesn't happen. Luckily the labyrinthitis disappeared by itself, i feel for people with chronic labyrinthitis i know how bad it is and remember thinking if this doesn't go away soon i'll go mental. Labyrinthitis pretty much ruined my holiday, but it didn't ruin my life, so i'm thankful it disappeared by itself. Hardly anyone has heard of it and no one can see there's anything wrong with you so that makes it worse! I have a newfound appreciation of my balance! I also now understand why people get scared of heights, i got vertigo up tall buildings. If I ever do get it again, I think to deal with it next time, instead of staring at things and panicking thinking 'that floor shouldn't be moving' 'everything is still', i should have just gone with it positively and been like 'yeah everything's meant to be moving it's all fine', i think i just confused my brain even more. Wow this turned out to be long, I don't even have any reason to be moaning, sorry, I never really got to tell anyone what it was really like. And there's nothing much on the internet so you are all probably the most knowledgable about it. I just want to know if all the things I got were normal, especially the sleeping and saying crazy things, and if anyone knows how I can avoid getting it again on a plane. I hope everyone gets better xx |
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So Ish the Sibellium helped tremendously with your 24/7 rocking vertigo ?, i now have no other symptoms but that feeling of swaying / slight light sensitivity 24/7 maybe i should try this drug. Was it hard to find a doctor willing to get permission from Canberra as im in Australia too? If this drug is a miracle cure ill be so happy, but hell if its not it can only get better for me! |
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Hi everyone Well I don't know what happened to me yesterday but it was one of the scariest moments throughout this illness. I've been feeling a little groggy all week so think I might have had a little virus but by Saturday was feeling better so had some friends over. We had a really nice evening and I felt almost normal throughout it, very little dizziness. Anyway my friends left around midnight and I went straight to bed. I woke at 4am and knew instantly there was something seriously wrong. My head felt like a lead weight and when I tried to move it up or down it felt like it was falling off my shoulders. I was petrified, the dreaded vertigo I had at the very start was back! I was hysterical because I was so frightened, I couldn't walk properly, not even go to the toilet on my own. I have had serious problems with my neck for the past couple of weeks. It uncontrollably spasms and that's the only thing I could think that could have caused it. I also fell asleep with my head tilted to one side whilst sat up and my consultant told me not to do this. Anyway my mum came and called the emergency doctor as it was so strange. If I sat still I had no dizziness; if I moved my head side to side I was fine but up or down and the vertigo kicked in. The doctor came and prescribed diazepam for the spasms. Within an hour of taking it the spasms started to ease and I could move my head more easily without the vertigo being so severe. As anyone else heard of diazepam being good for vertigo or was my oesteopath right and all my problem is my neck? The trouble is my blood work showed for around 10 weeks that I was fighting a viral infection. I don't know what to believe anymore! Lol! What I do know is that this set back as scared the living daylights out of me and made me realise that I'm not on the road to recovery like I thought! I'm scared to leave the house again! Hope everyone else is having a better time than me! Love to you all Ash xx |
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Ish, That's awesome that your nearing 100% of this mess. Gives me hope at least! ;) Flunarizine is a calcium channel blocker. I know those types of drugs are used with MAV (Migraine Associated Vertigo) with good success. You really think that this is what cured you? Did you ever consider migraines as a possiblity? You said it took 3 months for it to take effect? That seems like a long time... I wonder if it was either time or the drugs that healed you. Maybe both? I'm curious if I should try something similar. The anti-virals have done nothing for me pretty much. I currently just have the "off" vague dizziness 24/7 and the slight tinnitus going on right now. I can definitely feel myself improving ever so slightly, but it's like you said earlier, it definitely seems to go so slowly that it feels like plateauing. I am getting my balance testing on Wednesday, so we'll see how that goes. I hope everyone is feeling better today! |
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Why have people in general not heard of labyrinthitis and does it count as anything like a disability, it affects life hugely :S |
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Gloria - Sorry, but I didn't see your post from earlier until just now. Thanks for all the information. 18 months? Wow, you sure are a trooper. I can only hope mine doesn't last anywhere near that long. Yeah, I am with you on the drugs. I don't like taking anything that will change my attitude and normally wouldn't even consider it, but this illness is so long and draining. If I do take an SSRI, then it would just be until I got better... kinda just to numb myself from the symptoms for awhile. I'm still apprehensive, though, but I can see myself caving more and more. The MAV issue is certainly an interesting one. I hope to heck that I don't have it at all, and I think it's way too early into it to really worry myself about it. I have never even experienced a migraine headache and rarely even get headaches now, although I have had a couple of minor ones since this whole mess started. I started the diet as a "just in case" measure and also to attack this stupid thing from all sides and see if anything worked. I cheated pretty badly last week for Thanksgiving and felt absolutely no different. I'm starting to believe what everyone else on here has said in that it just takes time. I'll continue to eat healthy, however, just because it's good for my body and it certainly needs it right now. I'll let everyone know how my balance tests turn out on Wednesday evening. It's basically scheduled as an all day thing. I'll be getting the ENG, Rotational Chair, VEMP, ECoG, and an MRI of my brain stem. I already had an MRI of my brain, but my neurotologist wants one of my "brain stem" as a just in case measure. |
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Hi All, Well I'm still feeling pretty good, so no major setbacks so far. I did feel suddenly a bit dizzy two days ago, and it lasted a couple of hours, but it was only slight, nothing major. I don't have the swirly head anymore, but I am still ever so slightly moving when I am lying down in bed. That's all. S- The rocking vertigo stopped for me only two weeks after I started taking the Sibelium. I think it was the drug that worked because I went off the Sibelium for 4 days and the rocking vertigo came back on the 3rd day I was off it. I went back on the drug, and the rocking stopped after a couple of days. The only vertigo that stayed was the swirly head, but that got less and less over time. Only a neurologist or specialist can get the Sibelium for you, they apply to Canberra and send reports of your progress. If you are in Sydney maybe you could get a referral to see my neurologist, Dr Keith Lethlean in Randwick. Otherwise ask your specialist about it. The generic name is Flunarizine. Chuck - I can never be completely sure if it was the drug that helped, all I know is that many symptoms I had at the time stopped as soon as I started taking it - the head pressure, head ache, ear ache, buzzing feeling in my head. I have wondered about it being MAV, many symptoms fit, but my neurologist thinks not. I don't know if he is right or wrong. He says the drug works for people with 24/7 vertigo even when they don't have MAV. Like i said before, I think there is so much about the inner ear and inner ear condition they don't know, doctors are just making educated guesses. He said the Serc works for some, and for the others Sibelium works most of the time. Serc didn't do anything for me, I tried it for two months. He said it may take some weeks for the Sibelium to work, and the drug pamphlet states that when prescribed for vertigo, it generally takes 2 months to work. I had noticeable improvement after 2 months, and for the last 3 weeks or so it has just been ever so slightly improving. Like I explained to S, I think the drug did work because of the setback I had when I had a break from it early on, and the fact that I started improving generally from the day I started taking it. My neuro says he has been prescribing it for 20 years now, with good results, and it has minimal side effects. I haven't had any. It isn't registered here in Australia or the UK, but is used in Canada, Europe, the Middle East and Asia. Don't get me wrong, I don't want to be a drug pusher here, I'm just suggesting something that I think has helped me. I also think the natural healing of time played a big part, if not more than is apparent to me right now. There is really no definite way for me to know that. I just thought I'd suggest it in case it helped someone else as well. |
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Sorry, just to say that's me, Ish, above. My full name is Iseult:) Cheers, Ish |
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Ish thanks so much, wow Sibelium sounds like a miracle drug ive had this frustrating 24/7 vertigo for a year since November (started over night on 16th November, 2009 ) after labrinthitis maybe theres hope for me :p thanks ive been looking for a medication i can try for so long. |
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Hi S, I want to warn you, there is no miracle drug for this condition. It seems to have helped me, but that doesn't mean it will definitely work for everyone. And I have been on it for 3 months now, so it is not an overnight fix. The rocking stopped for me early on, but even now I do feel some movement when I am completely still lying down in bed. Not much, but some. I haven't had any side effects, but that doesn't guarantee you won't. I definitely think you should give it a try if you can find a specialist who will prescribe it for you, but I think it is best to go into these things cautiously optimistic:) All the best of luck with it. Let us know how it goes. Cheers, Ish |
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Well i'm feeling a bit better. i still have my dizziness but its not as often/intence. instead of a scary feeling its turned more into a akward head feeling if that makes sence. i would say i'm about 35% better 6weeks in, and i'm SO HAPPY for it even though at times i'm just like WTFreak! i still cant watch t.v. on a big screen though otherwise i will get dizzy antwhere for 15min to 12 hours. but OHH WELL, at least i can hang out with my friends and girlfriend now without being all like WOOOOOOOO EHHHHHHH NOOOOOOOO thanks to everyone who has tried, and have helped people. there needs to be more people like you all in this world :) i will keep up on the updates PEACE |
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Hi all, Not been on here for a few days. We've been visiting an elderly relative down in the south-west of England and the weather here is pretty awful with snow and ice. Anyway, back home now and the prospects of Christmas looming fast are scaring the hell out of me! Have been reasonable, although still picking myself up from the cold I had a few weeks ago. Weird thing is how I completely reacted to different surroundings in my uncle's house. The car journey was over 3 hours. When we stopped, it was like my head was still travelling. Then inside his house, because the layout and room sizes are so different - sent my head into a bit of a spin again. Chuck - glad you enjoyed Thanksgiving. You have to just go with the flow - enjoy and probably suffer a few consequences afterwards, but, life is for living. I pretty much put my life on hold, but now I enjoy and if it makes me a bit worse for a few days, to heck with it! Will be interested to hear about how your balance tests went. Ish and S. I have managed to get Sibelium from my doctor here. He said that he couldn't be responsible if anything went wrong because it is not licensed here. I've not started it just yet as I went back on Amitriptyline as I needed to calm down a bit (the anxiety issues raised their ugly head again) and need to find out if I can take the two together. S - you should be able to get it from your doctor. Here, in the UK they are very strict with prescription meds and so, if my doctor prescribed it, there cannot be too much against it. It is so strange. It is not licensed here, but is available on their medication lists and some specialist migraine doctors prescribe it anyway. So confusing! Claire/Jemma/Shirley - and all - hope you are keeping on the better side of good rather than bad!! Love and hugs, Gloria xx |
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Hello everyone, Well unfortunately, I'm back! Haven't posted on here for many months and I must say I can't believe how many of you are still here which means you are still suffering! I think I might be having a relapse, and only you guys could know how upsetting that thought is - it took me a good year to get over labs and the anxiety that it brought on - and I think it's back. I might be overreacting but have just had a week of nausea and vomiting and that strange feeling of unsteadiness, stiff, sore neck etc. I think I have always had a small degree of dizziness since last time but it seems worse at the moment. Needless to say my anxiety is skyrocketing which has brought me back to the internet! And just the knowledge that if the labs has come back, there's nothing any doctors can do that will help. Anyway I thought I'd post on here because I know you will all understand. This site was such a lifeline to me for many months. Hopefully it is all just an over reaction! Gloria, Jemma, Shirley, so sorry that this hasn't left you yet! Speak soon Cathy |
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So after five months of waiting I saw Dr. Halmagyi today, Wow , brilliant possibly the best doctor I’ve ever seen and the best in Australia for inner ear issues, (recommend it to other Aussies on here.) Finally a doctor who says this isn’t caused by anxiety, psychological shit like all the other doctors told me. I feel psychologically better now that one of the top specialists in the world has told me I will recover rather than telling me I’m f***en crazy and it’s all in my head. I asked about klonapin, and other SSRI’s and he said they are BS for inner ear issues, he said they are great for depression but are useless with inner ear problems etc as they hinder compensation. He even discussed with me the terrible anxiety produced by these symptoms is natural due to the fact you know you’re still yet you have feeling of false motion, and this can be extremely unsettling( as I know) He’s unsure why this phenomenon of swaying / rocking occurs in some people, but has seen many people with this thing, unfortunately it takes time to cure itself but he has recommended I swim and gave me a prescription of sturgeon for 3 months which I’m going to try as i haven’t been prescribed it before. We talked about my history and i realised even as a child I had motion sensitivity problems etc severe sea sickness, so it’s likely a vestibular event like labyrinthitis has knocked off my inner ear and i just need to exercise eat properly / time to get better. |
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Whew. I went through the gauntlet of tests on Wednesday. The MRI was a typical MRI experience, but they always seem to miss my vein for the contrast injection. Next I went to the neurotology office for my balance tests. First I did the rotary chair. That was probably the worst test. Rotating slowly in the pitch black dark makes you feel really woozy. Next up was the ENG, and that actually wasn't as bad as people made it sound. The vertigo they induced with the air in the ears was actually tolerable and nowhere near as bad as when I had it before. That or it was the fact that it was a controlled environment. The last two tests, the VEMP and the ECOG, were by far the easiest. As for my results, the VEMP and the ECOG were both normal. The rotary chair and the ENG both were within "normal" range, but there appeared to be a slight discrepancy with my left ear which indicated some minor damage there. The MRI was all clear again, so there's absolutely nothing wrong with my brain. The doctor called me today and basically explained that he couldn't really give me a distinct diagnosis. He couldn't say Menieres as I don't have all the symptoms required for it and the ECOG didn't show anything, but he didn't rule it out as a possibility. He said that time will ultimately tell if that's the issue. He said it's possible that it could be Labs or VN, and we can hope that that's all it is. He told me to keep active and at it for some self-induced VRT. If I don't feel like I am getting any better, then to call him back for some physical therapy VRT. Of course while I was talking to him, my ears began to feel full again. He said it was unusual to have fullness in both ears like that for Menieres, and that it should go away with time. I brought up the issue of migraines to him and he said that that's a possibility as well. He said that most people with migraines typically are very motion sick prone and get even more dizzy with VRT. I don't really have motion sickness, and my VRT tends to help me quite a bit. He also said that people with migraines tend to get dizzy with attacks similar to Menieres. I haven't had attacks at all, so he wasn't ready to diagnose me with that. Basically, the gist of the conversation was that diagnosis will depend on time. If I get over this, then it's Labs/VN. If not, then it's migraines or Menieres. He said that he knows that the worrying can be frustrating, but to try and keep positive and active. He said that I can take the SSRIs if I am feeling too anxious or depressed. Man, this crap really scares the hell out of me. I can explain the dizziness and the tinnitus with labs/VN, but I cannot explain the fullness. Why in the heck do my ears feel full every now and then? Can someone explain why this happens if it's not Menieres? Has anyone ever had the fullness and had labs and been cured over time? Does it ever stop? It's not that the fullness is bad... really it's not too terrible. It doesn't affect my hearing at all and my ear doesn't feel blocked. Sometimes it feels like something is just in my ears. It's just that this symptom is really difficult for me to explain away other than for dreaded Menieres. |
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Chuck: I had fullness big time. It was a symptom of lyme disease and bartonella (lyme co-infection). Been in treatment for 7 months and the fullness is now gone. I had originally tested negative for lyme, but found an LLMD (lyme literate Doctor) who did a much better test. Check out this link for the symptom list on page 9. HOw many do you have? I know many lymies where dizziness, fullness, and tinnitus where their #1 symptoms along with vision wierdness. http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf Also checkout Flash Discussions at flash.lymenet.org Be well. |
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Brad, Talk about freakish timing. On a hunch based on your posts on this site, I went to my GP who helped me get an IGeneX IgM/IgG test. I live in Texas, so I figured that there was no way it would be positive. I got the results today, and holy crap! My IgM test is both CDC and IGeneX positive. I have no clue what to do about it, though, as there are no LLMDs in Texas at all. I posted more of the story on the LymeNet boards (under grimmrimmer) if you want to take a look at my exact results. Brad - Do you have an e-mail address that I could talk through you with? Or are you on Facebook? I could really use some help and support right now. All - Well I guess more people should be lyme tested if you suffer from similar symptoms (which most of us here do). I'm sure that only a few of us on here actually have it, but I never in a million years EVER expected to have this. Especially living in a non-endemic region like Texas. I don't really know what to say except that I hope and pray that I can get through this and get fully recovered. I'll stick around here and keep you updated with any progress. I gotta find a doctor to go to first. :( Thanks, Chuck |
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hello fellow Labies Does Lab sometimes give you double vision in one eye? i wear contacts but iv never had this untill i came down with the it THANKS!! |
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Hi all, Cathy - I am so sorry you are back on here again! You know I don't mean that in a horrible way! I just can't think of going back to that really bad phase as at the beginning. If it is a relapse, then they do say that it shouldn't be as bad as at the beginning and doesn't last as long. I hope and pray for you that this is just a short blip. Just before Christmas too. Maybe you have caught a virus of some sort - although you are in the middle of your summer now? Well, I'm much improved but still not without symptoms I have to say and like you had a resurgence of the anxiety thing which made me go back on Amitriptyline. Did you manage to come off of it? Keep in touch Cathy and I send you big hugs. Chuck - my goodness you have had loads done - I'm having all that on Tuesday. I know it was a shock to get your Lyme test come back as positive, but as with Brad - find someone who can give you the right meds - you will be on a winner and soon feeling better. I wish there was a miracle drug for us all with this nightmare. On the ear fullness - I had that constantly at the beginning. It does go. Then it came back with the old ear-aches, but then has been gone over the last few months. My ENT consultant said that many people experience that and is because the pressure in the inner ear changes with this condition. It will get better. S- sounds like a good meeting with Dr. Halmagyi. It is reassuring when you do get response from someone who is the 'oracle' on this stuff. But, as I think we have all concluded - it is time, time, time and as poor Cathy has shown - it can rear it's ugly head along the way just when you think it's gone. Just think positive and go enjoy your holiday - have fun in Thailand. Sean- great news that you are coming out of this. You will be able to cope with the TV screen soon. Try to keep looking at it for a little bit at a time - as much as you can manage - it will help train your brain to cope with it. Try not to shy away from doing stuff that is uncomfortable. Little by little and before you know it you will be able to cope with most things. Keep going from strength to strength and have fun. To all my other pals - Jemma/Claire/Shirley - are you all snowed in at the moment? Cannot believe how cold it is here in the UK at the moment. Very 'heady' at the moment - tight and swirly. Out tonight for my first Christmas party with some friends - we are at an hotel, disco and everything. Dreading it a bit - not sure about all the noise etc. We have to live though don't we? Love and hugs to everyone. Gloria xx |
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Hi all Glad to hear people are making some progress. Chuck at least you now have some answers and as Gloria says you can get treated for Lyme. Brad has seen a lot of improvement and I am sure you will too. I didnt think you had Meunieres based on your description because I have read that occurs in drop attacks and causes hearing loss. I have had an ok couple of weeks. Usual swirliness and fatigue but overall I am coping ok and doing things as best I can. Gloria good luck with your xmas party! scary!!! I dont really have anythhing like that planned, it will just be another quiet xmas for me I think. It is really cold and snowy here in the north west which means I havent ventured out much. I have been doing some keep-fit exercises inside and I do think they might help a bit although gosh they tire me out! I am so unfit! S- so glad you finally got some reassurance. It really can help you mentally to be told something sensible by the medics and I am sure if you keep going you will improve. Cathy sorry you are back on here. I am sure it is just a blip because I have read that even when you have fully compensated for labs/VN that a virus, fatigue, stress etc can cause decompensation but the good news is you should recover much much quicker. Ash I hope you are feeling better after your horrible turn. Many times this illness has tricked me that I am improving then something horrible happens and you feel awful again and you think you will never get better. You do find that it is part of the ups and downs and you are not going worse overall. It will be quicker for you to get back to where you were. Let us know how you are doing... Gloria I can relate to that feeling when you go somewhere new and your brain is trying to process it. Normally I think this all happens subconcsiously but with us it is a lot harder and we are aware of our brains struggling to process all the new information! Let us know how your balance tests go and good luck for tonight. Claire, Shirley and everyone else hope you are ok. Take care Jemma xx |
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hello everyone just catching up on everyones posts so many to look through!!! Cathy I really hope this is a minor blip for you stay positive I'm sure in a week or two it will all be gone again. Gloria I'm with you on the travelling thing & new environments in fact my VRT thereapist told me on Thursday about the compensation process & how the brain has to get used to all new environments so when you experience a new sensation or environment it sends all the signal haywire=dizziness!!. Jemma glad you are feeling a little better lets not jinx it!! x I have been mostly up again even after that horrid cold not too bad (fingers crossed) I am not 100% dizzy free yet but I reckon I am nearing 90% with it oly really being bad in the evenings. Will see how my next 'monthly cycle' goes then i will know I am on the up (hopefully).Have booked a holiday to portugal in May mentioned the flying to my VRT lady & she has handed me a leaflet & recommended the ear plugs for take off & landing although she put,y mind at rest about it causing any problems with the inner ears the air pressure only affects the middle ear (used a model to explain) this helped my flying anxiety Anyway everything is busy busy here not too much snow Gloria,the children havent missed any school (1 had an afternoon off) so they are a little disappointed as I have a friend in Sheffield who hasnt been able to leave her house all week. Love to you all keep warm (UK's) Claire x |
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Chuck: GOOD FOR YOU! I'm not happy you have lyme...I'm happy you finally got a good test and found the ROOT of your labs. You can now focus on beating the best. Just another case / example of how I believe everyone with uncompensated labs should get an IGENEX test. If you do have lyme...waiting is a dangerous game. |
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Hey everyone, just came on here to say a quick hello and to see how everyone is doing. Update on me: I seem to be back to doing well - I am keeping my fingers crossed that it remains that way. I would say I am near on 85/90 per cent there but have some remaining visual dizzy stuff. I saw the neuro PT on Wednesday and she gave me a list of exercises to do. She also checked my neck and gave me a neck massage which I have to say was really painful as my neck is so stiff. I have to go back on Monday for her to do it again. She told me to concentrate on the exercises which I feel will make me dizzy the most, i.e. laying down and rolling from side to side (scary) as they will be more beneficial to me. She also said that most people do recover fully but there are some that dont. But she did give me hope and when I feel like this I AM hopeful. Glad that everyone seems to be doing better - sorry this is short but I am thinking of you all. Hugs Shirley xx |
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Hi All, I am still feeling better, although I do still feel an underlying slight dizziness sometimes and my tinnitus and ear fullness is still there. Chuck - when I read your post about what your ECog, VEMP ect tests results were, mine were exactly the same, and the doctors said pretty much the same things to me, so now that I hear you have tested positive to Lyme, I am back thinking I really should search out some way to get tested. I was living in Ireland when this all started, so it is a possibility. Unfortunately, because there is so much debate as to whether it exists in Australia it seems impossible to find a doctor who has even heard of it, let alone test me. I really don't know what to do at this point, because I have been worried about Lyme in the back of my mind all along. I know I'm feeling much better, but that could possibly be the tablets I'm on masking it, not fixing the root cause which is what I need. Thank you for letting us know, I am going to start my battle to get tested this week. Cheers, Iseult |
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Chuck man that no good i hope you feel better! how do you get Lyme in the first place!?!? makes me wonder if i have it now lol |
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Sean, I have no idea how I got it. I can only guess that it was a recent infection based on the fact that I did not have any kind of symptoms until 5-6 months ago. I have seen ticks in my house (found one in my bedroom!) which were brought in by by my dog. I also go for walks in the local park very often with my family. It could have been from either of those. Regardless of what the state of Texas thinks, Lyme does happen here. There are several cases here each year, and many people like myself have to go out of state for treatment. If you have similar symptoms (tinnitus, dizziness, occasional ear fullness/stuffiness), it wouldn't hurt to get checked out. The stupid thing is that the only accurate test is the IGeneX test that Brad has been advocating on here. You can get the IgM test for just $100 if you want to make sure. You'll just have to find a doctor willing to get it for you. If you live in the northeast, apparently that's easy to do. My GP was really cool and open to ideas, so he helped me get my blood drawn and order the tests. I have to find someone to help me treat it now which will cost me a good bit of cash to fly out of state and pay doctors which are not on my insurance, but I have a well paying job and you honestly can't put a price on your own health. Ish - I really feel for you living in whole other country that's non-endemic. I don't know if it's common in Ireland, but I'm sure that Brad could tell you more about that. I thought I was in bad shape living in a state that didn't acknowledge it, but at least I can drive or fly somewhere "locally" to get taken care of. You will have to be a trailblazer in Australia and see what you can do. Try and find any other people who have been through it if at all possible. I'm not sure if flying to a different country for a while like Ireland is a possibility for you. Don't give up at all and keep pushing for a solution. The sooner you get tested, the more likely it will be positive if you indeed have it. If it wasn't for Brad, I would have never been tested at all and probably would have ended up one of these chronic cases for years and years. I am hoping I caught mine in time to get healed 100%. I'll keep you posted on my treatment progress. |
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WOW, well its a good thing you have found the source! I live in Missouri "tick central!! but i do not think i have just for the fact that it happend to me durring Fall and it seems to be progressively getting better week by week. But i will get checked up if it have a relaps in the next month. Thanks for the info and get better! same goes to everyone els!!! |
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hello i'm new to this page. can i take asprin because when i take it it makes me dizzy... is that normal? |
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Hi folks: Just a friendly reminder to all to go out and get your IGENEX tests. I recommend both the IgM and IgG. Both Chuch and I had "labs" but lyme was at the root of it. I suspect many more on here have it. Lyme is on every continent. It is rampant in the EU and North America particularly. Iseult: lyme is in Australia. There was a recent case of a man in NSW who recently died. Before he died, his wife tried to get him treated for lyme. But the Aussie medical system refused stating lyme didn't exist in Australia. He never traveled anyplace else. After he died, he had an autopsy which showed his body was riddled with the disease. She is now suing the government. If people have dizziness / tinnitus and if it's accompanied by anxiety, stiff / sore neck, sweats, vision issues, chills, etc, you may have it. Lyme can and typically does "wax and wane" usually in 4 week cycles. ALthough it is not uncommon for people to have a flare and then for it to receed for a few months. Please know I"m not trying to hijack this board. I do know this is where people come for support from Labs. That's why I came here too. But...I'm trying to share what I found was the root of my labs...lyme disease. It can cause it as proven by John Hopkins University. If you have been dizzy with uncompensated labs for months..strongly suggest lyme. Uncompensation is NOT NORMAL. Here is a list of the more than 75 symptoms. If you have more than 15 of these, syspect lyme. I had more than 60 at one point (never all at once..symptoms would appear then disappear) http://www.canlyme.com/patsymptoms.html Be well! I'm 95%+ today after 7 months of agressive lyme treatment. Be sure to watch the trailers / clips of "Under our Skin" (oscar nominated lyme documentary) on Youtube. B |
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So I'm almost approaching 13 months and unfortunately still have 24/7 severe rocking vertigo that ive had since November 2009, i know it takes time to go away and i pray this is the year i recover :( ill easily forgot 2010 but managed to achieve many things this year at least ;) |
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Hi all Just a quick post to see how everyone is doing? It's been pretty quiet on here recently. Everyone trying to get sorted for Xmas? I've still not finished my shopping! Well after my horrible attack a couple of weeks ago I felt like I was improving again. I even had a couple of days with no dizziness at all ( god it feels so good when that happens doesn't it!!) Anyway a couple of days ago I started to feel a little bit spaced out and lightheaded, no swirliness just a bit unsteady on my feet. Well today I woke up with a horrid sore throat so I think I have caught my boyfriends cold. I'm hoping this explains the lightheadedness and I'm not relapsing again. Has anyone else felt more woozy when hit with another virus? Hope you are all well and looking forward to Christmas. Take care all Ashley xx |
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Hey Ashley i do belive colds make it much worse, aswell as allergies. i have read a couple stories where people get sick and have that spacey/vertigo feeling you were describing. Good thing is that you will feel much better when your cold is gone. IMO this will help you cope with LAB even though it sucks. you will never really get as bad as you are when you have a cold. i know when i have bad allergy days my head is just like AHHHHHHHHHHHHHHHHH IT WILL NEVER STOP!!!!!!!! Then afterwards its just like i'm glad i had that moment, so now i can cope with the all day spacey feeling where ever i go! But as my condition goes i dont even know if i'm getting better LOL I'm just glad to be alive, and i know when this sickness is gone i'm going to see life through a WHOLE NEW PICTURE :D Another tip is to stay away from fast food, or foods with high sodium they tend to make things much worse. anything that has 40% daily sodium or above per serving i would stay away from. also drink Gatorade, and water they really help with the dizzy feeling!!!!! But as far as me and my girlfriend it sucks because i just dont feel as happy as i once was. She can tell that but she also knows i'm sick and is staying by my side every moment of it I just take this sickness and think of it as another test in life. so we can appriciate the things that didnt mean as much to us. but now they do. at least to me. like a clear headed day is ALMOST the best thing us labies could ask for other than being cured. If you have any Qs i will be glad to share whatever i know :) PEACE, AND MAY THE FORCE OF GETTING BETTER BE WITH YOU ALL!!! |
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Hi all Well it is so quiet on here. How is everyone? Ready for xmas? My sister had her baby yesterday, a little boy called Henry James. I have seen a photo and he is so cute! I am having this horrible breathing/chest problem at the moment where it feels like I cant get a full deep breath and I keep yawning trying to get air in. I dont have a cold or anything like that. Also above my heart into my shoulder area is this sort of burning feeling. I have had it for a few days now and it is starting to scare me. I am trying not to panic because that only makes it worse. I have been trying to do some exercise recently and wondered if that hasnt helped. I really dont know and wanted to see if anyone else had experienced anything similar? Gloria did you get the results of your balance tests in the end? How did your xmas party go? Ashley hope your cold has gone, how are you doing? Everyone else hope you are all faring well. Love Jemma xx |
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Jemma, I have that burny thing too off and on, in the same place. I have had costochondritis before (inflammation of the cartilage between the ribs, basically) and it feels like the last remnants of that. Or, more specifically, a leftover tender spot from that. I've had it previous to all the labs stuff, but it can be brought on by stress or being run down and your immune system overtaxed. I have tried to post here a few times recently and my posts get lost for various reasons before I can get them up. Sigh. I saw that Chuck had a positive Lyme test recently; because his symptoms are so like mine, even to the time of initial onset and he lives in Texas, AND I actually did have a tick bite earlier in the summer, I'm going to see if my doc will test me after Christmas. No gloating, Brad! ha I hope everyone else is coping well and improving very day. I've had some weird new stuff lately, like constant tingling all over which has now spread from my limbs to include my tongue! Yay! Let's include everybody in the joy! Still constant wooziness, too. Less than dizziness, really, but it's there all the dang time. I just try to ignore it all and go on with life, but by the end of the day it has worn me out. I'm having the not sleeping well and not staying asleep more than 2 or 3 hours at a time thing again, too. Most of this had seemed to be improving and some of it had gone away entirely, now it's all back. The depression, too, not surprisingly. I hate it!! At least the Christmas decorations are done-pared down and it took me a week, but they're up--and I'm doing most of my shopping online. Merry Christmas, all! |
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Jemma: What you are describing is called "air hunger" and is a common with a Babesia infection...a common co-infection of lyme disease. Most people with lyme have lyme, Babesia, and Bartonella. Here is a symptom list (notice the dizziness): Babesiosis 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) Bartonellosis symptoms from fuzzyslippers 2.21.09 *********************** 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 |
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Hi everyone, Not been on for a while - Christmas organising has taken over everything. I've got 12 people on the day and 5 staying for 4 days. AAARRRGH!!!! Have been rushing around like a mad woman possessed. Thing is of course, I have now had a relapse again. Woken up with the ear pain, fullness, swirly head and mega headache!! Don't need this now. My own fault because I have got so stressed out about making sure I have everything done etc etc!! Jemma - congratulations on becoming an auntie! Hope your sister is OK too. What your experiencing sounds like a bit of stress to me, plus you have probably over-stretched some muscles. I have that prob. Not being active over the last year, I started to do exercising and all my back muscles have spasmed. Try to do some deep breathing and relaxation techniques Jemma. Did they do that with you in the classes you went to recently? Or if you have some relaxation music, take some time out and listen to that. It seems to me that the slightest bit of over exertion, stress or worry sends my body into panic mode, even though i think I'm OK. This lets me know I'm still with the consequences of labs and it hasn't really left. I have had a few quite good weeks (up and down), but more normal than I have had for ages. Yet, wham, back down I go this morning. Just hope it doesn't last too long. Also, last week went for all the balance test. Caloric again except with hot/cold air. Vemp where you wear big goggles and the harnessed, moving scenery visual contraption. She had to keep re-doing the caloric one as she wasn't happy with some of the results. So that makes me think. Won't find out the results until end of December when I go for my follow up. Weird how when I had similar tests done up at Prof Luxon's clinic they said my results were in normal range. Now I'm wondering. The Xmas party was OK - didn't do too much dancing and no drinking, so felt a bit uninvolved really, if you know what I mean. Everyone was getting merry around me. We left about 11.00pm - so not a late night. It was fun,but I didn't really enjoy as I would have done - but better than last year I suppose. Like Ellen, our tree and decorations are up - everything looking very sparkly. Seems I have bought 2 tons of presents for everyone!! My hubby said he thought I had said I was cutting back this year!!!!! I love Christmas and just want it to be better than last year. Love and hugs to everyone, Gloria xx Ash, Ish, Chuck, Sean, Ellen, and S - hold on in there, brighter days will be ahead. There will be blips, but there is progression. Claire/Shirley and everyone recently on here - hope you are all coping well and feeling better. Christmas wishes to everyone. Cathy - if you are looking in - hope your relapse was just a blip too. Let us know how things are doing. Sandie/Gary - you've not been on here for a while - good! But hope you are doing really well. Love to you both. Jemma - what are you doing for Christmas Day? |
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Hi gloria Glad you have been a bit better recently but sorry to hear you have slipped down a bit. My balance has been ok these last few weeks but this heart/chest thing is starting to worry me now. You start thinking all sorts, heart attack etc... I dont really want to go to the doctors if I can help it because of my past experiences with them I dont have any faith in them anymore but I am really hoping it is just over exertion like you said. I have until the last few days been doing some exercise on a daily basis and maybe that has triggered everything to spasm. Perhaps the muscles are now spasming lower down my body as I compensate. Who knows, but it is scary! Christmas day will just be a quiet one at home and visiting my parents at their house. I really hope I can breathe properly then. Claire I had that teeth whitening done last week. It went ok and they are a bit whiter but nobody else can see much difference! Love to everyone xx |
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Hi everyone Jemma - congrats on becoming an auntie! I'm not good at all; my cold turned into an ear, throat and chest infection! The dizziness and pressure in the head is back with a vengeance. I'm a bit worried because others on here have mentioned that a cold has not affected there dizziness too much but mine has. Does this mean my nerve has been damaged again? I hope I feel better by the weekend, it's my birthday on Sunday . I would just love to feel relatively normal. In regards to your breathing problem I have had this on and off throughout this illness. My doc always says it is anxiety related but I'm not convinced! I find I get mine if I do more so it could be related to that. Hope you feel better soon! Because I am so unwell I wasnt able to attend my appointment to assess me for vrt so god knows how long I will have to wait again. Everything is going wrong and I was just starting to get into the festive spirit before I got ill. Now I'm dreading it :-( Hope everyone else is fairings better and looking forward to the festive season. Take care all Ashley xx |
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Hi Everyone Just checking in to see how everyone is!! Jemma firstly congratulations!! what a lovely Christmas pressie for everyone :) I think you are having a little anxiety attack I know exactly what you mean about the breathing & yawning its because you are shallow breathing (anxiety related) & you kind of have to teach your body to relax & breathe properly again, if you were going to have a heart attack it would have happened by now, I really feel for you because i went through exactly the same last year my VRT lady gave me lots of relaxation techniques & i have a good relaxation recording i listen to on my ipod I really think thats all it is but its a vicious cirlce with anxiety. Glad you had your whitening no one noticed mine either but I do & thats all that matters :) Just enjoy some cuddles with your new born nephew thats enough to relax anyone xx Gloria, sit down, breathe and relax before the invasion. I am exactly the same, loads of entertaining this year, doing so much in the house to clean,tidy & decorate then theres all that shopping!!! I have had a bad week this week after seeing so much improvement its kind of hit me again but the good news is I think I am a little under the weather & def overdoing it so hopefully when things calm down I will improve again!! (Positive thinking) Ash, If you have a bad cold it will affect everything I am having another off week after a lot of improvement recently, I was told by the 'specialists' that being ill, hormonal changes & general tiredness will affect your symptoms so try not to worry & hopefully when you start to improve so will your symptoms. Oh well lots to do busy, busy out Sat night & next Wed so really hope to see some improvents & desperately trying to avoid all the nasty bugs going around. Hope eveyone else is 'not' on here because they are having a better time of it. Claire x |
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So 13months is behind me and Ive been rocking non stop 24/7 since November 2009 , i barely hold onto my sanity and am motivated by the fact that ill hopefully recover from this horrific vertigo this year, but i unfortunately always find stories of people who have this for 20 years which makes me horribly depressed , some days it feels like my life is over before it has even started BTW im only 20 years old, was 19 when this started, This condition consumes me i spend every waking minute of the day worrying if i will ever recover i tell myself i will but then when i think negative thoughts they seem to be confirmed by the fact that i haven't recovered yet after a significant period of time , i keep telling myself "hey this vertigo will stop' but it has barely died down in 13 months, however i can take comfort at least that all my other symptoms have abated. |
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Tina You might be on to something I have been through the ringer with all the tests in every direction only to be 100% healthy, except for the headaches, dizziness, fogginess well you guys you the symptoms. Finally my neurologist and my ENT came up with migraines associated Vertigo or Vestibular Migraines basically the same thing. I was given Topirimate (topomax) to take at night and meclizine for the vertigo. WOW!!! After a few days to get used to the topirimate because it knocks you out, the migraines slowed in duration, severity and occurance. Now the thinking is that with the clean up of the migraine problem the vertigo should be lessened and it has. Both meds do make you tired but I find that caffeine helps me as it also constricts the blood vessels the opposite of the dialation that occurs during an attack. I now feel about 90% and i can feel an attack coming on and deal with it accordingly rather than being beaten down constantly never having a chance to feel good or see what bothers me. I am still dialing in the meds/ casffeine/ excedrin/ meclizine combos but there is a world of difference in the last month. It has been almost 2 years and the last month has been a blessing, other people take for granted a day without a headache or feeling like you are walking on a rope suspension bridge. I hope this helps. Mike |
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how do you know when you are getting better? it feels like i'm getting better but i also feel more depressed, prolly because its takeing so long and my body is pretty much running on empty lol any advice would be awesome THANKS! |
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Glad you got a diagnosis and a medication that is working for you, Mike. I am guessing here, but what I think happens is that either migraine or the aftermath of a viral inner ear bug can lead to a brain that remains in a hyper excitable state probably in the area that is connected to the vestibular system. As a result, the person becomes highly motion-sensitive and sensitive to just about any sensory input. This volatile and fluctuating state won't allow your brain to compensate from labs which needs a nonfluctuating baseline, and that's why the dizzies go on for so long. Drugs like topomax which is an anti-seizure drug can dampen some of the over responsiveness of the brain, and then the dizziness can die down. |
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Tina Preach on sister you are pretty much right on, viral inner ear that morphed into a migraine and all this. The meds seem to work for now and i am developing a system to deal with it. But one thing I have learned is how the brain and the nervous system/vascular system works, it's amazing. mike |
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How the hell I found this page I will never know. All I know is there are more of me in this world. Nice to know I'm not on my own. I've only been suffering for 10 weeks now and nearly at my wits end. Thank you all for sharing and don't feel so alone now. Merry Xmas |
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Hi all, Well, been rushing around like a thing possessed to get everything ready for Christmas. Claire - am with you on how overdoing it seems to set us back! Have got the heavy headed, hangover feeling and the good old headaches are back. My neck has stiffened up again - joy oh joy!! Anyway, am carrying on as there is no alternative especially with 12 guests to entertain. I must have been MAD to suggest I would do all this this year. I suppose, in contrast to last year, I just wanted to feel 'normal' again and do all the stuff I used to without even thinking about it! Ash - so sorry you are having a real bad time lately. It is so hard to think you will ever feel better - but you do. Like Claire, Jemma and myself - some of the long termers on here - we have had good spells and the relapses, whilst not good aren't as bad as at first and they become an annoyance because you think this thing has gone. Also, when you slide down the snake you find you carry on more as normal each time as it isn't so bad, but just takes a while to get there. You will as it gradually fades. You are young and I'm sure you will see a quicker recovery. Keep heart. Jemma - hope you are continuing to do well despite the breathing probs - hope they have improved. Can't believe it is the 2nd Christmas we are celebrating with this labs thing. Whether it is because I'm used to it, but whilst not feeling too great at the moment, I'm carrying on as normal. Only hope I don't overdo it and have a major relapse after Christmas. Got a copy letter from the clinic in London where I went to have all the tests done. My left ear is 'off', my postural testing on the computer (can't remember what that was) is very poor and balance rubbish - to find out what all that means I have to wait until my follow up appointment in March next year!! Glad it is not life-threatening!!!!! I proved positive to a test called Utbergers or something. So basically, as I have gathered all along, is that my left ear has been damaged and whether it will fully recover - who knows. They recommend carrying on with the VRT - again, no appointment until at least 3 months in next year. So, what do you do. I'm carrying on with some of the CAwthorne-Cooksy exercises, but only because I have no others. So time, time time!! Anyway, my love and best wishes to all my fellow sufferers on here and pray for total recovery for us all next year. I will try to come on again just before the big day, but wish everyone a very Merry and Happy Christmas. Love and hugs, Gloria xx |
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Hi all, Its been a while since I have posted thought Id pop in and give an update about where Im at, basically I have recovered from my Labyrinthitis (took 18 months), I very rarely have any symptoms but have now developed some sort of CFS/ME type condition where I get easily fatigued if I do too much or get sick. Im convinced that what ever triggered the Labs also is responsible for the CFS/ME. Im gradually getting better but just had another relapse 2 weeks ago but I seem to be recovering quicker then previously, Im also battling depression due to all this stress I have been put through in the last 2 years. All I can do is continue to fight this and I know I will recover, to all those who have Labs try to stay positive, I know its hard but it will get better. Have a Merry Christmas everybody and a happy new year DC |
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Hi all Well I am still struggling with my breathing and discomfort around my heart. I am starting to think that I may have sustained a strain internally with the exercises I have been doing recently. Needless to say I have stopped completely now and am taking full rest to see if it improves. I must be so weak and unfit if 15 mins a day of fairly gentle exercise can cause this!!! I have seen the GP and they are doing a blood test and an ECG on xmas eve to rule out any heart problems. Oh fun.... there is always something with this illness! DC nice to hear from you. I can relate to the CFS/ME symptoms. I think that compensating from labs really takes it out of us and leaves us so tired and our bodies and brains overworked. I just hope in time ALL the symptoms resolve and we can live normally again. Gloria at least you have confirmation about which ear is affected. That is reassuring I guess - I think we all have a gut feeling about what is wrong with us but it is nice when it is medically validated! Well done for trying to entertain all those people for xmas, I dont know how you do it! As I have said, I do think the exercising and doing things helps with our balance but now I have to put it on hold as I think I have overdone it which is so frustrating. Wouldn't it be great to get on and do things without having to pay the price for it! Ash and Claire hope you are both feeling better and everyone else I wish you all a very happy Christmas and a healthy (ier) New Year in 2011!!! Lots of Love Jemma xxx |
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Hi everyone. I haven't been here in over a year. We have since moved (Canada to California!) to be near family. Last time I was on here I was literally crying every night for hours about myoclonic jerks which started and got progressively larger just as all my vertigo from the labs (which lasted 4 weeks) cleared up (early Sept. '09) that prevented me from getting any real sleep. They stopped altogether last December and I went six months with no symptoms whatsoever. Then in June the myoclonic jerks and all the twitches and vibratings came back with a vengeance. I spent months self-medicating (Nyquil and Melatonin together was all that worked) because I could not convince my new dr. for a while that this was most def. not sleep apnea and that I really needed to see a neuro.. I finally got into a neuro. and after a 20 minute interview and exam I was diagnosed with nocturnal myoclonus of sleep onset. Unfortunately at this point I am dependant on a low dose of anticonvulsants to get any sleep. I sometimes still wonder if I actually had Lyme disease and not merely labyrinthitis. At this point I am just praying that I will one day once again sleep on my own, without drugs and without the horrible jerks/spasms and twitches and tremors. Anyway. Just wanted to update from last year. |
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Hi all, DC - how great to hear from you and really pleased that you have made a good recovery despite the ME thing. I think we can all relate to that. The stress and worry that this thing causes is unparalleled. Just try to take things easy - put yourself first and don't overdo it - you will totally recover. Mind you, there is me telling you to do exactly what I'm not doing at the moment! Probably will have a meltdown after Christmas is over! Thanks for keeping us updated and every good wish for 2011. Jemma - let us hope that 2011 will be our year to feel really well. I'm doing OK - just not wonderful. Totally stressed about getting everything organised at the moment. Seem to be cooking for 5,000! I can;t even take a glass of alcohol to keep me calm because of the effect it has on me at present! Have a good and relaxing Christmas. Expect you will be a doting auntie?! Good at changing nappies?! Love and hugs to you too. Nan - good to hear an update from you too. I really hope the medication gives you some respite. I thin there are times in all our lives when things seem to go horribly wrong and there seems no let-up. Keep positive, because even if it is a bit of a long haul, we will all get there in the end and hopefully will be rewarded with total health and happiness. That is my Christmas thought for everyone. I hope your move has proved successful and enjoy your new home. Very best wishes to you too for 2011. To everyone else - Claire/Shirley/Sandie/Gary/S/Brad/Chuck/Sean/Ash/Ish/Tina/Cathy and the rest of the Sharp Blue Crew - Happy happy Christmas and love and hugs for a wonderful 2011. Gloria xxx |
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WIshing all us, the seekers of reassurance, information, a cure, answers about these vestibular disorders a joyous holiday season, however you celebrate. Let's hope that 2011 will bring all of us all over the world a peaceful healthy, happy, and dizzy-free new year! |
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To all the people here who come for encouragement and who have encouraged me, I wish for all of us a very Merry Christmas and a happy, healthy New Year! |
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Hi all, I'm just a newy at all of this. Only on week 8 at present. Drs have diagnosed Labs. Been in hospital and all the test CT and MRI. At present they have me on stemitel(seem to do nothing) to my 24/7 rocking and bobbing. My main question is, I'm suppose to be going to Vanuatu in 6 weeks and am a little fearful how am I going to feel on a 4 hour flight .....seeing I got this after a flight from Egypt with a slight cold. Is it going to make it worse?...or will it make no difference? Any insights would be great. Sorry if I don't make sense. But I know you all understand how hard it is to put any sentence together when you feel like this. Love to all Donna PS I hope you all know this site helps me just manage to keep my head in the right space |
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To Donna Walker: I know just what you mean. Doctors didn't diagnose me, but helped me by process of elimination, you know? I found this website and it has been a real lifesaver. Every single weird symptom I was having I found others here who had the same thing. I mean really, who would even think to tell a doctor "Sleep feels different and I wake up every two hours"?? Or "I have these odd muscle thumps all over and I feel like I'm looking at things through a camera lens." Classic symptoms, though. This is such a bizarre condition. I've been in this for about 4 months now and currently am having a fairly normal patch after a very rough week. I hope you can find some smoother going soon. Ellen |
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Hi Everyone, I just wanted to wish you all a very Happy Christmas and much healthier and happier 2011 for you all. This year has been really difficult for all of us, so let's hope you all get the break you deserve. I'm still doing much better, no dizziness for me for more than a month now. I'm still on the meds (Sibelium) but will be going off them in a few weeks, so we'll see how that goes. I finally found a Lyme disease specialist here in Australia. I sent him an email with all my symptoms and illnesses of the last two years and he asked to see me. I had to travel 5 hours up the north coast and stay in a motel for the night but it was worth it. He was very thorough and took some blood, but I don't have the results yet. He seemed very knowledgable and explained all my options for blood tests. He thinks the American IGENEX tests aren't right for me because my strain of Lyme (if I have it) would be a European strain and IGENEX covers the American strains. My best option is a test done in Germany that is as successful and thorough as IGENEX is for Americans. But I have to have some tests done here first. He thinks it is likely that I have Lyme but I have to wait and see what the bloods show. Anyway, if it's not I'll be very glad to rule it out because it's been on my mind for a while now. I'll keep you updated as to how it goes. Anyway, take care, and happy holidays xx |
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Hello everyone, long time no hear from me but I have been checking in on everyone, but I guess I've been too fed up to post anything. Although the Verapamil has helped a little I'm still suffering the other symptoms, especially since getting a cold, the pressure in my ear along with the acute pain and the vertigo have all come back with a vengeance and has made me feel particularly lousy, especially when the dizziness made me fall over! My GP tried doing the Epley, but it wasn't successful and he put it down to Labyrinthitis. I went back to ENT in early Dec, but apart from being told to get a part-time job, go to bed for up to 2 weeks when ill and when I asked about VRT, was told it doesn't work. I came away feeling very despondant, the feeling that I'd waited for months for this appointment and was full of hope only to feel like we'd wasted each others time. I don't know what to expect next, hopefully like everyone else I would love a quiet time and ultimately a cure - here's praying to that. Love to you all Sue x |
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Well i'v been doing good untill today when i took a 2 1/2 hour nap and woke up feeling dizzy ugh. this time the dizziness feels like its behind my eyes. its kind of a tired feeling. but all and all i'v had this for about 4 months now and i think it is getting better with fewer days of dizziness and more days with a clear head... hopfully its will stay like that but i only know not to keep my hopes up lol also the flu season is coming around so i and everyone els should be EXTRA carful and carry hand sanitizer with you if you go out since i'v heard that colds can set you back. but if my condition stays where it is then i would say that i'm at about 40% recovery :D :D i cant wait to go joging when i get better it will be AWESOME!!!! U can find me on facebook aswell SeanE.Sullivan@yahoo.com add me Labies i would love to have friends on there i can talk to about this HOPE EVERYONE HAD A JOLLY CHRISTMAS!!!!! |
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Hi all, Hope everyone enjoyed the Christmas festivities. We had a good time with all our family, but it was non-stop for me, preparing food, drinks etc etc. So, of course, today have stayed in bed as felt a bit rough when I woke up this morning. I knew yesterday, felt heavy-headed, tightness around my head and off balance, muscles aches, tight neck muscles etc. This morning felt wobbly and a bit nauseous. Classic symptoms for me. But, knew this would happen considering I have been charging around at the speed of light for so many weeks now. Donna - welcome to this site and really feel for you having to be here at all. Although I haven't flown with this, but have been told by my specialist that flying only affects the middle ear which controls pressure etc. and not the inner ear and therefore should not be a problem. She said if I was a person who suffered from travel sickness when travelling, then it would be no different. So do you normally suffer with travel sickness previously? Her advice was as a precaution, to take a couple of travel sickness pills to stabilise the balance mechanism and to use ear plugs during take off and landing. Keep positive and do as much normal stuff as you can - although it is difficult when you feel so rotten sometimes. Sue - great to hear from you again. Sorry you are still feeling so down. Have you tried Serc? For me it helps with the pressure in the inner ear which then takes the pressure off the middle ear. It doesn't help me much with the dizziness, but to have some relief is better than nothing. If you haven't tried it ask you GP, but get the proper brand Serc and not the generic betahistine hydrochloride which is what the NHS dish out. Even though they say it is the same, I found Serc is better. Ish - have you made the decision to come off Sibelium? How long in total have you been on it now? Was it to help with your headaches originally? Good luck with you Lyme test results, do let us know what the outcome is. Glad you are doing better anyway. Sean - there is no rhyme or reason when this thing strikes and is worse than other times. The nature of this beast - up and down but you are getting better all the time. You should try jogging now if you can. All the doctors I've spoken to recommend getting back to sport, running, gym stuff as soon as possible. Start slowly and do a little. You may feel it has set you back a bit, but it is just the brain getting used to a new thing. Go for it - it may be just the thing to speed up your recovery. Hope all in all you had a good time at Christmas too. Jemma/Claire - hope you had good times and haven't had any blips. Hope mine is just a short one. Will take it easy for the next couple of days. Haven't got anything major planned for New Years Eve but are having friends over on Sunday. After that - the kitchen and hotel are CLOSED LOL!!!!!!!!!! Love to you all, Gloria xx |
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Hi everyone Glad you all survived the xmas period! This was my second xmas with labs. Overall it was better than last year although I am not working this time round which helps with my energy levels. I even managed a thimble full of Baileys on xmas day, made me a bit woozy headed but not as bad as it could have been! What an achievement! My breathing is still a bit tight. I had the all clear with my heart on the ECG so I am starting to think that it may be that the compensation process with the muscles is working its way lower down my body and is now affecting my chest/back/diaphragm. Gloria you have the muscle thing going on, do you think it's possible that the tightness works its way down our bodies affecting different muscles groups as we compensate? My mum thinks I can't link every symptom I have to this illness but we all know how strange it is!!! There is a flu virus going round my family and I have started with a sore throat and feeling extra tired today so looks like I have it :-( My mum has been suffering really bad tinnitus 24/7 for the last 2 weeks, no dizziness for her though. The doctor has syringed her ears but to no effect so she is worried about whether it will go away by itself. Sue - sorry your docs have been so useless, I don't think it is very encouraging to be told to get a job and that VRT doesn't work!!! How long have you been suffering now? Ish - glad you are feeling better and no dizziness. Will be interested to hear about the Lyme tests... do let us know your results... Gloria glad you managed all your guests over xmas, well done you!! Have a well deserved rest, we all know how much this takes it out of you. I do think that exercise helps with the dizziness because I saw an improvement in my balance when I was doing the aerobics stuff a few weeks ago however it seemed to cause my muscles to spasm in my chest/back. I have stopped exercising now but would like to start again in the new year if I feel up to it by then! Hopefully 2011 will be our year of reovery! Fingers crossed....... xxx |
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Hi Jemma, Way to go girl - Bailey's!!!!!! The first rung on the ladder to normality! Hope you enjoyed yourself much better than last year. Overall I have to say I was much better and only myself to blame for my, hopefully, little blip! So strange how you think your chest back diaphragm muscles is to do with compensating. ME TOO!!!! I have had tight, spasmed muscles in my side, around my waist. My lower back and leg muscles are all out of sync too. Isn't that strange! With me I can't say it is to do with over-exercising. I have never had muscles spasm in these places before - so maybe there is something to it. I thought about going to my doctor's again, but by now they must think I am a hypochondriac! All these odd things do get you down though don't they? I just want to go about and feel well, and normal, even though I am tons better than last year, but want rid of every little niggling side effect too! So sorry for your mum with her tinnitus - maybe part of a viral infection. Apparently, Serc is supposed to be good for tinnitus. Like you too Jemma, I want to really get on with a healthy regime in the new year and start a good exercise programme. I've already signed up for a Pilates class near me. Never done it before, but my physio said it would be good for my posture and back toning. So will see how that goes. Also, want to start swimming! I do like swimming, but how lazy is this - can't be bothered because of having to do my hair afterwards and everything - such a chore!!! See - with an attitude like that no wonder I'm not fit LOL!!! Keep well, and hope you don;t suffer too much with your cold/flu. Speak soon, Love and hugs, Gloria xx |
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Hi all Merry Christmas to you all (sorry it's a bit late, I had a tough week b4 Xmas!) my infection really brought back all of the horrid symptoms but I still managed to have a small party for my birthday and I really enjoyed it even though I wasn't symptom free. I nearly cancelled in the afternoon because I felt so bad so I was glad I fought on through it. Gloria I'm so pleased you got through your Xmas and enjoyed it. I don't know how you did it! I wasn't good on Xmas day. The morning was ok but by the afternoon I felt awful and couldn't even sit through all 3 courses with my family. It was my own fault I over did it on Xmas eve because I was feeling quite good. I'm hoping I do better on new years eve! I saw that you mentioned to Donna about what your consultant said about travel sickness. Did your consultant mention if this condition can leave you with travel sickness if you didn't have it b4? This is something that is really concerning me. I need to travel all over with collegues as part of my job and at the minute I am finding some journeys make me feel really queasy! I never suffered b4 and I'm worried I'm going to be left with it as travel sickness is to do with the inner ear. I really don't want to have to give up my job as a result of this awful illness! Jemma- I had an ECG and bloods b4 Xmas as I have been experiencing palpitations every day. I have suffered with them in the past but never as frequent as I am experiencing now. My heart rate was a bit fast but they just keep saying it's anxiety. Well I don't see how standing washing the pots can send the body into a panic attack but there you go! Lol! I think mine may be due to lack of activity. I used to lead such a hectic life but now it can be days b4 I leave the house. Claire/ Shirley and the rest of the crew - hope you all had a lovely Xmas? One thing I have noticed lately is that the swirling in my head has changed. Before I could physically feel like something was moving around and around in my head but now the feeling is a lot lighter but maybe a bit faster when I close my eyes. Does that make sense or do I sound ridiculous?! I sound ridiculous, I know! I analyse it far too much. Anyway anyone got any plans for new years eve? I can't wait to see the back of this year! Although I am scared that 2011 will see no change. But no I've decided, 2011 is about being positive and getting my life back. Love to u all xx Ashley |
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Hi Ash, Well done you for getting through Christmas, even though there were rough patches. That was pretty much how I was last Christmas (my first with labs). Ash I think if you have started to feel a bit queasy when travelling and never did previously, this is because the nerve damage to the inner ear is quite new and fresh. Whilst I am no doctor, although have learnt SO much over the last 18 months, this will get better as you recover and the nerve heals. The more things you do to re-train the brain, even if they make you feel rotten, you need to do. I would - only when you need to make a journey - is to take travel sickness pills and if flying, use ear plugs too. Most people on here have reported no probs with travelling after a few months of this thing. So don't get too down beat. The palpitations thing and all the head stuff is really typical of labs. I would fill a whole book of symptoms that I have experienced over the course of this thing, and because I have never had anything like them before, has made me think I've got all sorts of awful diseases. This does make you turn into a bit of a hypochondriac!! Keep positive Ash - we will all win over this nightmare. Having a quiet New Years Eve - learnt my lesson from overdoing it last week-end at Christmas! Might sip a little Baileys (will raise a glass to you Jemma - hope you will try the same again LOL!!!) and watch Jools Holland. We then have friends over for a meal on the Sunday to celebrate. After that it is the part I hate after all the festivities which is january and Feb - so dull and dismal. Still, onwards and upwards positive thinking for what will be a positive year for us all. Love and hugs, Gloria xx |
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Merry Christmas & Happy New Year to everyone!!! I am still here, have been checking on everyone on here the last few weeks when I've had time but havent posted as wasnt feeling too positive!!! Feeling better now so thought I'd catch up with you all. Jemma really glad your ECG was okay I know what you mean about linking everything to this condition but its hard not to. Hope your Mum gets better & you havent got the flu. So many people seem to have it & I know of several (incl my sister) who have ended up on steroids anti biotics & inhalers as its got so bad & affected the chest. I now dose myself up with so many vitamins & echinacea as I really dont weant to get anything to 'set things off again' I think my bad patch before xmas was that my body is fighting off the bugs & affected the 'dizzies'. Spent all of xmas entertaining & still 2 lots of bed changes to come!!! roll on Wed 5th kids back at school, me back at gym & my house back to myself. Gloria my hotel will be closing down then too!!! :) I am going to Portugal in May so really hope the flying doesnt mess anything up! I was given some leaflets from my therapist about flying with inner ear conditions so must dig them out, she has assured me it will be okay!!! Anyway a positive 2011 to everyone on here I am reaching my 1 year Labs Birthday in Jan. Never imagined then it would be so long. Anyway I have been enjoying a few tipples this xmas & to be honest I feel hungover most mornings anyway so may as well have a reason for it and when I relax with a few glases I forget all my troubles anyway, so maybe go on be a devil let yourselves go for New Year & raise a glass to a positive dizzy free year ahead!!!! Happy New Year Claire xx |
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Have been reading this site for the past 3 months now. Like many of you have been suffering this thing since november 09 so this was my second xmas too. An improvement on last year as was not even going out the house much but the symptoms are most deff there. Like many of you have a few good days then straight back down to earth with a bang - swirly head, swaying, stiff neck, could go on an on and on!!!! is anyone else really sensitive to noise. When out shopping etc just want to turn the volume down on everyone and everthing. Even the beeping at the supermarket checkout seems so loud, something i would have never have noticed before. My family have been so understanding about labs, but get the feeling friends etc feel i should be better now and i cant even be bothered to explain what it feels like this far on as unless experienced it cant expect anyone to understand. Anyway glad had the courage to write in as can be a very isolating illness. Hoping 2011 will be less dizzy for everyone on here, can only hope! Wendy x |
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Hi everyone, Claire - lovely to hear from you. Isn't it rubbish when you don't feel great but have to carry on because of big occasions like Christmas. I kept myself going, but knew once I stopped I would be in for it! Still, we did it - well done us I say! Wendy - welcome and sorry you are at your second Christmas too. Whilst this is the worst thing ever, it is reassuring when you read of others experiencing the same or similar symptoms and know you are not totally barking mad! Noise and light for me are 2 of the many things. That has got better recently, but noticed how it was worse the other day which goes with my blip I'm having at present. I also understand about not bothering to keep on having to tell friends how you are as they all think it is impossible not to be better by now and it must be something else. Do you do any VRT exercises. I stopped, but then wonder if that is why I've gone down the snake on what we call a game of snakes and ladders!! This is such a good analogy for this monster. So, have started to do them again. Where are you based Wendy? Anyway, vent as much as you like on here - it does help. Hope you had a good Christmas and wish you and all of us, the most best 2011 with nothing but healthiness and happiness. Keep in touch. Claire - you maybe right about a couple of tipples! My constitution isn't as strong as yours, but go for it and enjoy. I will try to bring in the New Year in style! Love and hugs, Gloria xx |
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Thankyou for your welcome Gloria. I do a short amount of VRT daily, only which i have found on the internet. Have found GP and ENT pretty useless. As soon as i had the hearing test and had only lost a small amount of hearing in my right ear (affected side) found there really wasnt much they could offer me and that was back in March. Been trying to cope with doing research ie diet, not too much salt, plenty of water etc. Dont think it is a subject that GPs know much about. It is such a debilitating illness that is not recognised which makes it so much harder. Tried to go shopping with my teenage daughter in the sales today, had to come home as felt swayey! Mind you she can shop til she drops! Dont know about you but feel have lost a year out of my life. I gave up my job and are just about coping on my husbands salary, but not working does little for your self esteem but find i am so tiered just coping with each day, pathetic i know. Mine started after having a lumbar puncture for severe headaches i had been getting. First of all it began with vertigo and then developed into labs. Still get so much fullness and ringing in my right ear, just wish there was a magic cure for all of us. Happy New Year to you, hopefully can make it til midnight!!!! Since having this 10 o'clock seems to be my limit. Wendy. x |
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Hi guys Im new on here but not new to dizziness. Ive had this 'thing' 15 months and it was also my 2nd Xmas dizzy! Thing is I was doing quite well I still had daily symptoms but quite mild about 10 days ago I got a throat infection quite bad . I was ok on the first day and then a few days later all my really bad symptoms from sept 09 came back I couldnt function on Xmas day at all and since then Im not much better although my dizzness has changed and now when I lie in bed I feel a kind of rocking motion back and forth its horrible and waking me up. Im seeing a specialist in Leicester at the moment and am up there again Weds . Im also suffereing migraines and yesterday the whole bridge of my nose went numb . Im also tilting my head to one side all the time and cant stop doing it no matter what I do when I put my head normal I feel worse ! So what Im asking is has anyone had a bad relapse and then gone back ti where they were? Its really scaring me as its happened before but was over a lot quicker and ive never had sleep probs with this but the dizziness is keeping me awake . Has anyone got MAV on here that is what they think I have now on top of VN ? Thankyou and hope everyone has a better 2011 |
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Happy 2011 to everyone on here! Really hope we all see good improvement and final release from all this rubbish we suffer. Wendy - You sound like me and a good many of us on here. Been to countless specialists, doctors etc and really the conclusion is - yes you have a vestibular disorder, do VRT because that is all we can give you and time, time, time! I gave up my job as well, but do feel the pressure financially as my hubby is the breadwinner. I want to be a bit more positive this year and look to seeing if I can get to doing something. A friend of mine owns a hairdressers and she has said I can go and help out whenever I want (won't get paid) but just to build up my self-confidence and see how a 'working' type of routine affects me. This has knocked my confidence for six as you just don't know how you are one day to the next. You are right Wendy, self-esteem goes right out of the window and I hate feeling that I don't contribute to the financial coffers! Have they diagnosed your headaches as migraine? I have been a migraine sufferer all my life. They did think mine was MAV, but have dismissed that. Have tried all sorts of awful medications to restrict my bouts of headaches, but I cannot take them. This is why they think I am taking a long time to compensate. At the end of the day I don't think anyone knows and it is a time thing. The fullness and ringing have diminished for me over time (I'm at 18 months now). The ringing in my ears came back this week, but that was the relapse after Christmas. So I do my VRT once a day, sometimes twice if I'm feeling positive!! Have been doing them all along, maybe they have helped - I don't know. To help with my flagging energy levels, I take a Berroca vitamin tablet every day. Managed to see in New Year - very quiet, and am having a lazy day today. Really hope 2011 will be a good one. Sweetness - Happy New year to you. How wretched that you have relapsed so badly. They say, that relapses don't last as long or are as bad as when this first hits. I know others on here have said they too have experienced different types of 'dizziness' through out this long haul of suffering. When you see your specialist, you do need to ask for them to do the tests that will diagnose you as specifically having MAV. MAV, from what I have been told is a separate issue from labs/VN. They should give you medication to control the migraines and that then should help with the brain recompensating much quicker. All sounds easy when you write it down - in reality it isn't as straightforward. I'm still trying to find a medication that I can take and doesn't have horrible side-effects, but then I don't specifically have MAV. Have you tried VRT? I've said before, I don't think it is a cure all, but it does help. Let us know how you get on with the specialist next week and wish you a very much improved 2011. |
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Gloria, getting back slowly to the work place sounds like a good idea. Sometimes i feel ready, but on bad days couldnt contemplate it. They never found out what my headaches were as mri and ct scans came out clear. I hurt my neck a while before the headaches started whether that caused them. They were not what i call a traditional headache more of a wet feeling in the head as if i had water in my head, or sometimes would feel a draft in my head as if someone had opened a window. Sounds mad. Even the neurologist looked at me like i was talking in a foreign language. I wish i had just the headache to cope with now and not labs. God do i hate it as everyone on this site must. Do you feel VRT does anything. I find the excercises so boring. I suppose anything is worth trying. I think with labs you could cope better if you were given a date where it would go, ie, 1, 2 or 3 years etc, just so you would have something to aim for. At the moment our lives are in limbo. I suppose we are all searching for an answer that cant be given. Like you must stay positive, mostly do. Some days i find the frustration of not doing everything that i used to is the worst thing as have always been such an independant person, still am, hate asking for help. Find i am much less sociable than i used to be, but where i feel so drained from this i actually dont care which is awful. Its so good to rattle on to people who understand, hope not boring anyone, let me know if i am!! Still have relatively good sense of humour, think we all need it. All the best for 2011. Wendyx |
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Happy New Year!!!!!!!!!!!!!! Hello everyone Hi to Wendy & sweetness you all sound so familiar relapses & better episodes I have been assured that it will go & the better periods will finally outweigh the relapses til it goes completely!! I was told that mine could be MAV by the neurologist but ENT said labs so who knows I do VRT occasionally but it has def improved just extremely slowly I just keep thinking that at least by next Xmas it will be gone! Wendy I also feel i have lost a year of my life it seems that 2010 is all a blur its also the year I turned 40 so waiting for life to begin... Well I did have a few tipples last night Gloria & only a few hours sleep so okay at the moment all tidied up ready for the next lot of visitors on Sunday then the B&B will be closed til Feb half term!! :) Claire x |
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Hi Wendy, You most certainly are not boring anyone. When I found this site, it was like a tonic in itself. I really thought I was going crazy, but the comfort I got from hearing about others with the same or similar symptoms gave me a lot of reassurance - even though I still felt awful! For me at the beginning as well as all the head swirly stuff, I was badly nauseous and my neck, head and shoulder muscles so sore and tight. They are now. It seems this blip for me has given me the tight head and all the muscle probs and not so much head swirlies. I do think VRT does help me. Coincidence or not, but when I stop after a few days I feel worse. So, maybe there is something in it. They are SO boring though. Mostly, I do them for about 5-10mins once a day. Have you seen a VRT physio? They do understand all what you are going through - more than the doctors. Do ask about getting a referral. I am looking forward to this year, hoping that there will be further improvement on last year - which I could cope with a bit more. Like you though, the frustration of not just going about your day as we all did before is awful. We will get there though Wendy. You mentioned about your daughter - is she at home with you? At home is just me and my hubby - he can't wait to get back to work! I have found him too many jobs to do around the house! He is not Mr. DIY! Are you thinking of taking a holiday this year? We may go down to Devon or Cornwall soon for a long week-end just to get away from the same four walls is a tonic! Anyway, keep positive Wendy! Claire - sounds like you had a very good time and haven't suffered too much from it - excellent news! Speak soon, Love to all, Gloria xx |
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Hi again Gloria, i have two teenage daughters at home one who is 17 at sixth form studying for her A levels the other is 14. Sometimes too many hormones for my husband to deal with! He also is not mr DIY, more into his computers and a collector of vinyl records, drives me mad cluttering up the house with them. At the moment no hols planned but may change later on. Sometimes worry about planning too far ahead. Devon and Cornwall are a good place to relax, we are in the southeast, kent, so busy everywhere. I havent been referred for VRT. Too be honest i havent been back to the doctors since about April with this. Didnt find them very helpful at the begining so have almost given up on them. to Claire, welcome to the 40 club. I found life did start to begin at 40 with a new found confidence. Was good for a couple of yrs then wham bam was hit with this thing at 43! Hopefully you wont have to put up with this much longer and life will really begin for you, maybe just a couple of years later than expected! When i am fully over this thing im sure will appreciate life so much more as when i am having a good day i get so much pleasure out of the most simplist of things. I feel so sorry for some of the younger people who get this, must be so hard for people in their early twenties etc, when all you want to do is to be out with their friends etc. As new year decided to try and start to de-clutter the house, Will wait for the girls to go back to school and rummage in their bedrooms, they dont notice that way. Tidy house, tidy mind and all that. Take care, Wendy. x |
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Happy New Year everyone! Well it hasn't started too well for me. Full of a cold as is almost everyone I know. My sister and her new baby seem to have it and now they are in hospital as the baby is ill. We are all hoping he is ok and will shake it off and it is just a cold/flu. No exercise for me at the moment. I am just looking forward to normal dizzy stuff minus the cold, flu and breathing diffiulties etc etc that the last month brought. Gloria really interesting about your chest, side and back tightness and that feeling in your legs. I wonder if mine will eventually move into my legs as they compensate! Maybe this time next year I will be complaining about leg muscle spasms!!! Welcome Wendy and Sweetness. Both of you sound just like all of us long timers on here. Wendy like you I have kind of given up with doctors and have to accept this is a time thing and now for me to try and heal myself. I really hope we all get there soon! Ash I am with you on the anxiety thing. I don't think the anxiety we experience is psychological, it is more our brains responding to the weird messages so it is triggered by doing physical things and there is nothing we can do about it except take it as it comes and try to ignore it. Did you say you had returned to work? If so, how are you coping? Claire glad you had a nice new year's eve. You seem to have a handle on this thing and I am sure you will recover in 2011. Fingers crossed... I really must try to go on a small holiday this year. I know that when you do something and it isn't too bad you feel a great sense of achievement! Love Jemma xxx |
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Hi Wendy You should go back to the doctors though and ask to see a specialist. Im 24 life is tough with this Im like Im 84 not 24 and I cant see me getting better again . Im still in a relapse woke up to room spinning etc dont know what to make of it or what it is and when is it gonna go ! I could scream somedays I just want a life again x |
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Hi Donna, my heart really goes out to you. Its so cruel to be only 24 and get this. Work and social life must be hard for you. Can just about remember when i was 24 just wanted to be out and about all the time. The spinning is awful, hopefully that should go soon, im lucky i dont get that any more. Tough for you, but just be strong, it will pass! Sooner the better for you and everyone. Sounds like you are also having a tough time Jemma. Having any sort of cold/flu really triggers feeling awful with this. Hope you and your sister and baby soon recover. I think anxiety plays a massive part in this illness. Even on a goody day when out and about, there is always the thought that you could feel funny at any time. Its funny how everyone seems to mention a stiff neck. It must have something to do with it. Mine is stiff and cracks and creeks sometimes, maybe old age!!! Just taken the xmas decs down, know its early but couldnt wait to tidy round. Weird how simple tasks like that can make you feel swayey must be all the bending down etc. Take care, Wendy xx |
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Sweetness I have been diagnosed with MAV or VM Vestibular Migraines pretty much the same thing, after almost 2 years of labs/VN . TOPOMAX has been an incredible help as well as meclizine. Meclizine I take if I need it once and a while during the day if I feel a little off(dizzy/vert). Its been 2 months on this diagnosis and it has been a huge positive change in my life, the migraines are managable the vertigo feelings are minimal and both are easily handled with meclizine or even Excedrin Migraine if needed, as well as a little caffeine. Let me know, and good luck. Mike |
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Hi Donna, My heart goes out to you as well. Have they checked you out for Benign Paroxysmal Positional Vertigo (BPPV) which can follow labyrinthitis and treated with a positional maneuver or Migraine Associated Vertigo which can be a migraine process that appears with or without headache ,but can cause spinning, disequilibrium, rocking sensations, and even tinnitus. That is treated with diet and migraine preventative medications. |
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Hi again today has been a bit better but ive had enough of it in general . Trying to be strong and not think that this is it forever hard though. Tina Ive been checked for BBPV numerous times and never show positive for it although I think I have it but maybe crystals are in another part of the ear or something and not causing nystagmas? I have been diagnosed at the national hospital london with MAV and maybe VN too. I was supposed to have numereous treatment CBT , VRT , Medication. My Gp refuted the diagnosis and did not refer me for any of their recommendations! I managed to see a locum who took pity on me and reffered me to Leicester Royal infirmary at my request and now Im under the fantastic Mr Rea . They havent diagnosed anything yet but Im back there Weds so am hoping they have a treatment plan for me fingers crossed! I worry so much I have menieres and this is the start or something? Its such a cruel illness which takes away your well being and sense of contentment really . I find it very hard to relax now whereas I never used too. I miss going out for a drink with my friends and working etc xxx |
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Hi all, just popped on to wish everyone a Happy New Year. Donna - I agree with Tina, it sounds to me like you have BPPV along with your labs. I suffered for months without actually knowing that I had BPPV, I just thought it was lab symptoms. The ENT doc at the hospital performed the Epley and although it didnt work straight away, after about 6/8 weeks the rotationary vertigo was gone. I am still left with the woozy dizziness but thank goodness that has almost left me now (she says with fingers crossed). Something I discovered the other day .. I can lie flat again .. woohoo !!! Probably not much for some but I haven't laid flat for over a year !! Well as you can probably guess I have remained quite good. I hate tempting fate by saying that and especially as I am suffering from a sore throat today and hoping that I haven't caught the bug that the kids got over christmas. The wierd thing is I have again started to suffer from anxiety and Claire I am once again listening to your tapes to help me get over it. I do feel that I can do more but my confidence is at an all time low. Very strange I know !! It might be the winter blues. Gloria/Claire/Jemma/Ashley and all the new people - hope 2011 is a year of recovery for all of us .. we certainly deserve it. Take care Shirley xx |
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Hello everyone, I thought I'd respond to some of you. This really is a horrid illness, mine started almost 5 years ago and has been particularly awful in the last year. I'm just recovering from an ear and sinus infection and although the pain is subsiding I still feel bad most mornings and my balance has been badly affected, even drying my hair can make me feel dizzy. Like a lot of you my ear is very sensitive to noise and I'm getting more ear hissing now and a lot of pressure, also at my last ENT appointment I was told I had more hearing loss. I was also told my MRI and all other tests were clear. I do have migraine related vertigo and BPPV. I am due to go back to ENT in Feb, but I'm not holding my breath for any great news. I will try to be more positive this year and I do make myself go out every day with my dog even though it is sometimes a great effort. I'm very lucky that I live in a beautifull part of the country - Cornwall, but when you suffer this dreaded disorder it really doesn't matter where you live, you still feel ill. As for work I gave up my job 2 years ago and although I'd love a job I don't feel consistantly well enough, unfortunately this illness is a great confidence yapper. Thankyou Gloria and Jemma for your personal interest it really does help to know there are people who can really understand how you feel. Hope all of the rest of the sufferers are getting some relief best wishes for the new year to everyone. Sue xx |
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Hi everyone.. i've been meaning to do this for some time now.. I left comments on here a while ago. (page 9) I had the damn dizzies/labyrinthitis for ages and i just wanted to post back when i was all better! i've been absolutely fine for ages now.. and i remember feeling like there was no hope. Crying myself to sleep and thinking that there was something more wrong with me. Well, it took me about a year and a half to get to 100% again, but it can be done! so please don't despair. You will get better :) i hope this helps.... i know how all of you feel xxx marita x |
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Hi guys Has anyone else found that their dizziness has changed? Since my relapse it has changed in that I feel a constant head pressure and the dizziness is different (I preffered the old dizziness) I had the mother of all migraines yesterday my head went numb and today have the most intense pressure in my head and just feel permantley dizzy all the time with exrta dizzy spells on top but its not the same dizziness I used to get its weird . My head is still tingling this morning and going numb on/off I just wanna know whats wrong with me Im finding it so hard to think straight through this fog. I was meant to start a new job today but had to phone the manager last night and explain my situation and that Ive had a relapse and I cant do the job shes wasnt happy and dont think she believed me. My world is a very scary place for me right now :'( x |
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Hi Donna, wanted to speak to you first sounds like its all a real struggle for you at the moment. Evertything you are describing is very familiar, I'm not sure how long you've had this (without trawling through all the posts)I started end of Jan 10. The dizzines & fuzziness has changed so much over that time sometimes unbearable & other times manageable (as it is mostly now). I had MRI scans & lots of tests to rule out anything sinister as i was convinced it was something terrible. Once I had got my head round it all & read up on it alot I was able to cope so much better. I do feel I have a handle on it now but it has taken a long time to get like that and even now on bad days i still have those dark thoughts that maybe it is something more serious! when that happens I just sit quietly & remind myself of all the things I know of it & think of the times that I felt much worse to remind myself I am getting better very very slowly. I really feel for you being so young, not that I am old at 40!! Just try really hard to stay positive & keep it under control. I am lucky that I dont have to work like a few others on here working would have been very difficult over the last year. One more thing dont know if its the same for you but my dizziness is very hormone lead, in that 1 week before my period my symptoms get much worse & the migraine type headaches begin usually lasts about 10 days or so. Anyway try not to be scared & we all do understand exactly what you are going through :) Wendy, 40 has sucked for me so far!!!! I know that when I feel 'normal' again life is going to get so much better. I took my xmas decs down yesterday too just looked at all the dust left behind!! My girls are 12 (13 in March) & 11 so hormones have started kicking in for them now!! They have been very good over the last year with me not being myself I have also tried so hard to hide as much as poss from them as I experienced the awfullness of growung up with a very ill Mum (MS) & dont want them to experience any of what I went through which is good in a way as it makes me act normal & not mope around too much feeling sorry for myself! I have always been a very busy sociable person but this thing has changed me, without a doubt although the last few months more of the old me is creeping back much to my friends relief I think they were all quite worried at one point, its hard not to get very down isnt it?? Anyway onwards & upwards I am more positive & I KNOW it WILL go soon. Gloria yep I got through it all, so much for a quiet Xmas I am quite exhausted now but it has been fun. Will be resting for a feww weeks as much as poss now though!! Hope you are okay Jemma I realy hope your little nephew & sister are okay, I cant believe how many people I know who have been so ill with this flu, so far so good for myself & my family although my sister had it really bad before Xmas & ended up on steroids. Love to you & them x Shirley hope you are okay too Ashley hope you are getting less anxiety/palpitations it all comes with the condition mine is under control now & I've stopped checking my pulse constantly (like I was 6 months ago!!) I stil get the odd wierd heartbeats/palpitations but I just try & ignore them Then they dont get worse I do find it worse when i am feeling dizzier it is all connected to the whole 'fight or flight' theory of anxiety so when you get dizzy the body goes into panic mode as its not 'the norm' try relaxation cd's or even hypnosis it helped for me :) To everyone else lets hope 2011 is a better year & there arent too many other members of 'The Sharp Blue Crew' Claire x |
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P.S Thanks for posting Marita. I hope I can be one like you soon too & say I am 100% better. We all need positive posts too :) |
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Thanks Claire Ive had this since sept 09 but my symptoms did get better only to come back with a vengeance Xmas eve its very scary when that happens esp when the dizziness changes too . You get used to the way u usually feel and when it changes again its frightening as I wonder if Im getting worse? Im due on my period this week so that could be why im not improving much . Im off to Leicester tommorrow cant wait to see what they say im so ready to kick this thing now 2011 here I come (she hopes ) lol x |
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Hi donna, good luck with your appointment tomorrow. Lets hope you get some help and good advice. Let us know how you get on, any magic cures they may give you, pass them on!!!! If only. Claire, totally understand what you mean about trying not to show how awful you feel sometimes in front of the children. I think they sense when you are feeling bad, i try not to let on, but if im quiet they just say is it your labs?? Bless them. They have been so good and understanding, mine are slightly older so prob easier for me. I hate the fact i cant do some of the things like going to the cinema with them, they went to Oxford Street the other day, just knew i couldnt cope with that. Glad you are nearly getting back to your oldself. Think we will all be better people from this because we will appreciate the most simplest of things without the wobbly feeling! Hope everyone else is doing ok, or as ok as you can be. I seem to have the hissing in my ears back now, not had that for a while, its weird how quick the symptoms change from day to day. Gone back to sleeping with 3 pillows had got down to two but found that the hissing was worse last night when lying flatter. Woke up with stiff neck!!! You really couldnt make all these symptoms up if you tried. Weirdest illness ever. The positive thing is that we all WILL make a full recovery (PLEASE). Well done Marita, wow you must feel fantastic to be free of this. Cannot wait for the day when i can say that, think will put it on the local news, no make that the national news! Any way take care everyone, Wendy x
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Happy new year everyone!! I hope to god that all of us can leave messages like marita by the end of the year. Claire - I'm sure you are on your way to a full recovery; you seem to be coping really well at the moment. I've got everything crossed for you! My anxiety is quite bad again at the minute. When I'm left alone I start to feel really panicky and I get scared to move in case it sets of the swirlies. Totally ridiculous I know! Are you ok travelling as a passenger now? It still can make me feel a little queasy and dizzy. I'm hoping it will go because I travel so much with my job. Jemma - so sorry to hear about your nephew. I hope he is getting better. I haven't gone back to work yet but I going to start working part time from home first of all to break into it slowly. My work have been really good and have paid me my full salary for 6 months but that has come to an end and now I have to try and claim from works insurance company. I just want to get back to work though because I am so bored but I know I wouldn't cope with it at the minute. Donna - I am 24 also and feel exactly the same as yourself. Many times I've cried over the fact that my life appears to be ruined but I promise with time you learn to cope with it better. Dont get me wrong i still get down beat about it, but i have glimmers of hope now. I hope your appointment goes welltomorrow. Gloria, Shirley and Wendy - hope you are all well and starting 2011 on a positive note! Love to you all Ashley xx |
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Happy new year all! It's been awhile since my last update, and I just wanted to let everyone know that I haven't abandoned you! It seems like all is pretty much well from what I read. I hope that all of you continue to improve. Where do I stand? Well, as you may or may not have read, I had a CDC positive test for Lyme Disease. I am in the middle of treatment from my GP until I see my LLMD at the end of the month. My treatment is very similar to what Brad started with for his LD treatment: Doxycycline with a Flagyl pulse. The medications are pretty brutal on the stomach at first, but I have gotten used to them. As for my progress, the drugs haven't gotten me quite so well as fast as they did for Brad, but I do definitely see some progress. Pretty much within the first few days of taking the antibiotics I noticed my ear fullness go away. It's been pretty much gone ever since and when it does come back it's very, very minor and doesn't last very long at all. The "swirliness" on the other hand has been more stubborn. There is some slow progress here, but it is taking awhile. The good news is that I can now sleep on a single pillow (i.e. not upright) like a normal person! Also I actually have moments almost daily now where I feel nearly completely lucid and normal. The bad news is that stores are still a problem for me. If I am in Target for more the 5-10 minutes, I get all woozy. I do feel a little bit better there, but I think that will be my measuring stick for my progress in this area. Finally the tinnitus pretty much remains unchanged. There are moments when it seems to fade, but it always seems to bounce back up to its normal volume. I am hoping one of these days it will permanently fade, but I think that it will be the last thing to go. I'll keep everyone posted on my progress in case anyone actually cares. :) Hoping everyone is well, Chuck |
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Hi there Little Donna(24) My heart goes out to you sweetheart. Just remember what everyone on here tells us IT WILL END ONE DAY. You must know in your heart it to be the truth. I'm into colour therapy. I find wearing as much pink(uncondtional love) and green( healing) makes me feel a little better. I know I sound like and old hippie but it can't hurt. You also need to laugh at yourself as much as you can. Just try and be happy ,love! Are you able to go to work with all you dizzies? Keeping busy also helps. Love to you all Aussie Donna xoxox |
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So its 13months ive been rocking 24/7 since the day i woke up with the room spinning im still waiting for the day ill feel the ground is still or this problem becomes temporary (a sign im recovering), i would donate all my money to charity if it meant curing me off this horrible disorder but when your sick like this you realise not even money can help you and appreciate how important your health in comparison to material items , ill do anything to get back to normal and pray every day i will return to the state i was before this horrid condition, i swear ill feel reborn everything will be great, the simplest chores such as cleaning the house will seem a pleasure. My Dr has put me on Sturgeron 3x a day for 3 months in an attempt to eliminate the vertigo/ reduce while he recommends i excercise im told its quite effective at treating peripheral vertigo im still yet to see results but have only been pursueing this treatment for 3 weeks, the next route of course is Klonapin which is also effective at treating rocking vertigo in the meantime im trying to keep busy, but this condition seems to consume me. Its a bummer to feel sometimes like your life is over, im probably the youngest person on here to contract this problem was 19 when it started but i guess god has a reason for everything. |
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Hi all, My goodness so many people on here. Great to hear from everyone, although sad that some are still feeling really bad. Hold on in there - you will get better, Although I know I'm still not right, I am a whole lot better than I was a year ago. The progress is so so slow you don't notice it until you reflect back quite a few months. Jemma - so sorry to hear about your little nephew and sister - and you too who have all been suffering with this wretched flu bug. I sincerely hope things are much improved and he is out of hospital. Has this set back your labs symptoms? Love to you xx. Claire - so very pleased to hear you are coping really well and apart from that time of month, you seem to have got a handle on this whole nightmare. Do you think you are near that 'winners' square on the snakes and ladders board yet LOL?!!! Bet you can't wait until your holiday in May? We are just having a long week-end away in Devon at the end of the month - not sure about what to do later in the year. Not sure we can afford anything much this year - especially after Christmas!! Keep doing well xx. Shirley - how lovely to hear from you again too - have often thought about you. Good progress for you too. I know what you mean about the anxiety issues. That and all my muscle spasms (especially neck and shoulders) seem to be my bug-bear at the moment - some swirliness, but not horrendous. Although as you say you are afraid to tempt fate! Very happy 2011 to you xx Sue - sorry to hear you are feeling so down at present. It is the most wretched thing. If we all knew a time frame, then that would help us all enormously. Are you still taking the Verapamil? Did it do any good? I also gave up work and really feel a bit useless, but know I can't commit myself to anything permanent just yet. I am very envious of you living in Cornwall. We spent 2 lovely holidays there last year- first just outside St. Ives and then last Autumn we were in seventh heaven in St Just-in-Roseland. I want to move there. Are you north or south? As you say though, it doesn't matter where you are, when you feel rough, you feel rough. Do try and keep positive - this year, apparently, I have been told, is going to be a very positive one for everybody. I'm hanging onto that. Send you hugs and all good wishes for 2011. Ash - know about the panicky feeling. I've never had such a thing before and always been 'normal', calm and controlled. Symptoms ebb and flow- each time though they are less severe, even though still not nice. I went to a health shop like Holland and Barrett and bought some Valerian capsules. I found they did help. You can also buy it in a tea-bag formula. Tastes like weeds, but it does help! Don't go back to work until you feel you can cope. Even when you think you will be ok, the slightest amount of pressure will put up your stress levels. Maybe,start gradually doing part-time at first. It sounds like you work for an understanding company. Just don't be pressurised into returning too quickly. Sending you big hugs for 2011 too. Wendy - lovely to hear from you. The pillow thing for me has been quite hilarious when I think about it - although haven't felt like laughing. For years I have always had 2 pillows. When this thing first hit I had about 6!! Took me some months to get down to 3, then 2, then back up to 3/4 again with all the 'blips'!! I had to keep them under my bed as it was no use putting them away, as the number I needed to use changed constantly! Should have taken shares out in the pillow company, I bought so many! You are right - you couldn't make up some these odd, strange symptoms. Keep positive xx Donna - hope you get some good and practical news from your appointment today. Because this thing doesn't recover like any other illness, and the symptoms constantly change, you have no idea what is happening or whether you have something else altogether. As you are aware, you are not alone and we are all here to support you. Be positive - it takes time, but things will improve, even when you have blips along the way. My neighbour's friend had this when she was your age. She is now 35. It took her about a couple of years to get out of it, but it diminished and just disappeared. She has been fit healthy, now married with 2 children and hasn't had any relapses. You will get better. Marita - THANK YOU for your inspirational message. Good health to you forever. Chuck - great to hear from you too. It seems even when you have been diagnosed with Lyme, it still takes a while to recover. At least you have proper medication and can see changes, albeit slowly. They will happen. Very Happy New Year to you and your family. Finally to Aussie Donna - old hippie or otherwise - good on you. I bet you look very colourful and that certainly cheers everyone up. Donna - are you near the flood area in Aus? Such an awful disaster. You sound like you can instil positiveness in us all. Do keep in touch. Don't know how long you have been suffering, but any helpful hints or tips - we could all use them. Love and hugs to all, Gloria xx |
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Thankyou everyone! Gloria thankyou that makes me feel better so much Im scared Ihave Menieres which worries me . Well I might aswell have sat and spoke to a wall ! ENT was a bit of a joke tbh dont know why I bother . Hes saying its BBPV although I have no eye movement which I was told wasnt possible in London?? He's unsure on the migraine asking me if my diet is helping it Ive been on the diet a month now and no its not helping. I ask him what to do Im going through hell please help me ! He doesnt seem very clued up on MAV at all maybe Leicester dont believe in MAV im not sure he siad it MIGHT be causing my symptoms. In the end he had to go and speak to Mr Rea and ask what to do with me while Im sat waiting taking an hour to get there and I get 5 minutes of his time . He then concludes I have to go through the torturing tests again to see if I have any damage. Im so confused they wont rule anything out or in Ive had this 16 months now and Im so angry I want it to go away and I dont wanna do them tests again GRRRRRRRRRRRRRRRRrr |
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Anonymous Did you see a Neurologist, (I am unfamiliar with Englands Medical set up) or can you. That's where I received most of my help as far as MAV and medication, its been a complete turn around and it is somewhat of a new diagnosis so that might be why he is not buying it. Good Luck and keep pressing forward. PS. I did all the tests twice as well before they diagnosed MAV. Mike |
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Hi Donna, I've had 3 lots of tests done. When all this started I went to see a private specialist as I was so scared and worried. Tests normal, although headaches (I get migraines) not helping for things to improve. (So I'm told). Second lot of tests done up in the main hospital in London - outcome - normal and within range (whatever all that means) definitely migraines, they said. Saw another specialist - NHS, near where I live - no not migraine related vertigo, but not helping recompensation. By now I am so so confused. Just had the outcome from the latest round of tests - right ear a bit dodgy - always was told left! Am now awaiting the Rotational Chair test (how medieval does that sound!). Saw someone who told me all the diet stuff, give up caffeine etc. I have given up caffeine and I do think that has helped to be fair. Basically, one person says one thing, then another contradicts it all. Out of all this and all the people I have seen, it is a time thing, do VRT, get as much normal activity and exercise and sit it out. Donna, the most help I have had is from the VRT physio therapist. I'm waiting to see another now, but the waiting lists are so long, it will be another 3 months!! Also, am being referred back to a neurologist to try more meds to control my migraines. Ish - who posts on here took something called Sibelium which helped. I have the meds, but need to talk to the neuro first before I go ahead and take it. Donna - it is the most awful thing - you must believe you will get better. Certainly get to see a proper VRT therapist - who will confirm your BPPV and do the necessary manoeuvre to correct it. It might take a couple of goes, but that does work if you have BPPV. She/he will definately tell you. Out of all my appointments, the only thing the specialists seem to confirm is that I have or have had a vestibular disorder and VRT is the only route. Ask the ENT to refer you to a physio. Keep heart. S - did you get to your holiday in Thailand over Christmas? You do sound down at the moment. Having just told Donna about Sibelium - did you pursue that with your doc? Also have you tried Serc (betahisteine hydrochloride)? Take whatever it takes to make you feel better and more upbeat. Think you have been brilliant to cope as you have. 2011 has to be the year for you to see real improvement and recovery. Keep us posted. Love and hugs, Gloria xx |
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To everyone on this site,and especially Gloria- you have been so kind. I'm feeling better after my ear infection but still find it difficult to do certain head movements eg looking up and back, or twisting my head as if to look underneath a chair. I am feeling better and really hope that this feeling will last. Although I have suffered with this for nearly 5 years, I have had times when it has gone, so there is some chance that any time soon I should get reprieve. I really feel sorry for the younger sufferers, I can only imagine how my own children would cope, as they are a similar age. I have been looking back at some diaries recently and realise that although the main symptoms of off-balance, neck and shoulder pain etc etc are still there it does change and new symptoms emerge as old ones go, maybe thats all part of this mystery illness. Gloria - in answer to your question does the Verapamil work, yes I think it helps, as when I've forgotten to take it I wake up feeling like I've drunk a whole bottle of wine! I am feeling more positive on the whole and yes sometimes being busy does help, as does the company of others, although sometimes all of those things seem to make it worse. Sometimes you just feel too poorly to be social or busy and yes it is hard on your family, you do get fed up with saying you feel dizzy, and I'm sure they must get fed up hearing it. Well I can only hope we all get relief from this soon or failing that a more accurate diagnosis and health care professionals who are helpful and interested. Gloria, Cornwall is lovely; we live in Helston. I hope every one else is starting to feel better or at least know that we all understand what you are going through. Best of wishes to you all Sue xxx |
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Hi all Well I am recovering from a nasty cold/flu. It has of course set me back with the fatigue and off balance feelings but I am hoping as it goes I will improve. My sister and little nephew are out of hospital and recovering so fingers crossed they are ok. So many bugs about this time of year. I am glad I dont have to go out much as I am sure I would get another. My mum has had three lots of it and still has 24.7 tinnitus. I had the results of my ECG and blood test which were normal so can only assume that the heart/chest pain was due to either the exercises I was doing or another part of compensating from this. It has improved this week but I have done very little activity since I got flu anyway. Donna so sorry you are having such a bad time lately. I had a bad setback with a change in the type of dizzines after about 5 months of this. It really scared me as I thought I was going worse too. The only thing I could think that was positive is that if it can change (even for the worse) it is at least capable of changing and that means for it can change for the better too. Echo what Mike said about seeing a neurologist or a neurotologist rather than an ENT. I have seen 4 ENTs and they were all useless with this disorder, totally clueless about it and how it affects you in every way. I have got the number of a VRT specialist which was recommended to me by my osteopath last year. I did speak to her on the phone but as I then got treatment on the NHS I did not go to see her. She is based at the Cross Clinic in Lymm, Cheshire and sees people privately for about £50 per session. I have thought about making an appointment to see her because she sounded like she knew her stuff. Apparently she trains other therapists in vestibular disorders and she told me that anyone with the migraine gene will take longer to compensate because they finder it harder to reprocess the balance information. If anyone wants her number I can give it to them. Gloria like you I felt it was my left ear that was the problem but the only very minor things they have found have been with the right ear. How strange! Like you say it is just a time thing I think. I am really hoping you are right about 2011 and it is a positive year for all of us. Ash I hope you manage ok with your job, remember dont overdo it as it can be tough. I really can empathise. Everyone else hope you are all ok xxx
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Yeh Gloria i had a great holiday, it really hits you when you get back and realise another year of terrible swaying that's probably why i feel down sometimes. My doctor prescribed me with Stugeron( cinnarazine) sibellium is a stronger form of cinnarzine called flunarazine so if stugeron is positive in helping me then the doc might try sibellium. ive tried serc but it had little effect at the start of this condition. |
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so i'm moving to Colorado this spring and if i still have lab by then does anyone thinks/or knows Medical Marijuana will help? I'v never really smoked it but if it were to help i would get a prescription. |
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Hi everyone, hope all ok. Gloria, how did you ever sleep with 6 pillows! You must have been tipping forward at night. I had max of 4 to begin with, but so uncomfy. Only slept with 2 last nite, as ear hissing and popping slightly better, but enough to be constantly aware of. Very sensitive to noise at the moment, my husband has a cough and really hurts my ear, not his fault but want to say cant you keep the noise of your cough down! Noticed the kettle, tv just seems so much louder. Hope you are coping, am really sticking to my VRT, have done it twice for 2 days. Found one on You Tube, to walk up and down the room but walking in a figure of eight. Have not tried that one before. Would try anything at moment. Claire, are you enjoying the peace now the girls are back to school. Mine have struggled getting up in the mornings as they tended to lay in over xmas hols. Back to the school run and packed lunches etc. hope you are still making good progress. Donna, sorry your appt wasnt great. I think we all expect answers that the doctors dont seem to have. It really is a weird illness with no set pattern to it. I think you have been coping well, and make the most of any good days you have, im sure in time there will be many more to come. Ashley, must be hard for you to being only 24. How did yours first start, was it after a cold? Can understand you wanting to go back to work, dont feel any pressure until you are ready though as this thing is really draining. Hope you have a good circle of friends that support you. Do you manage to go out with them. Bars and clubs must be so noisy for you. You sound like you deal with this illness really well. Being positive does help. Jemma, Hope things are improving with you after your cold/flu and hope you sister and baby doing ok. Does your mum take anything for her tintus. I read Vitamin B and ginkgo biloba are supposed to help with that. Sue, sorry to hear you have been suffering for a long time. Like you am having trouble with coping with noise and hissing in ear, its worse than its ever been. I would love to go back to work, really miss the routine of it and the social side of it too. I would just find it too much at the moment. You are so lucky to be in Cornwall, but like you say when you dont feel great, doesnt make much difference. Oh well, better go and face the supermarket for the weekly shop, at least can hang onto the trolley if feel swayey. The joys of being a housewife! Love and good health to all Wendy xx |
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Hi all Just a quick question today... Has anyone experienced feeling their pulse in the back of their head when lying down? I've been experiencing it more often at the minute and it is starting to worry me a little! Thanks Ashley xx |
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my firend just got told she wont ever fully recover just get used to the symptoms from VN but she wont go back to her normal self! She only has 20% damage in one ear OMG thts so depressing is this true? x |
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Hi all, Have just written loads and the thing crashed on me. So start again! Jemma - really glad you are feeling better and that your sister and nephew are out of hospital. You didn't need all that worry on top of everything else. I'm sure you'll get back to how you were, but for me, it is not the off balance so much as all the odd muscle spasm stuff. I've still got a tight head, my neck muscles are awful and the muscle underneath my diaphragm have just tightened. Don't know why - not as if I have done anything strenuous - even though I should LOL!! As you say,maybe it is all part and parcel of this thing 'progressing'??? Sue - thank you for your lovely words. Thank goodness we have each other on here who so understand what we all go through. I was interested to read that you feel dizzy when you turn your head or look down as if to look underneath a chair. My VRT therapist gave me a different set of exercises a couple of months ago to address these same issues. You may want to try them It is boring - you are so right because they are really repetitive. I do them once a day for about 5-10mins. They said I should do them twice a day. If I'm being really really good (not often) then I may do them twice. Anyway - one is to stand near a wall ( about 2 feet away) with anything on it - pictures patterns etc. First - look up to the top of the wall and focus on a spot, then straight ahead at something else, then at floor level. Look up, middle and floor, focusing on each thing - do this for a good minute. Then do the same thing, but this time look up to the left, then middle but to the right and then floor back to the left. (Zig-zag). Again for a minute - more if you can or maybe do it a bit faster. Then I hold onto the end of the kitchen table, bend down to look underneath it, turning my head to the left. Straighten up and then bend down and look under again. I do this for about 8/10 times (you may only want to do 2/3 at first). Then after each set, stand up and look ahead and focus until any dizziness has subsided. Do the same but on the other side i.e. bending down and looking to the right. Then I have to stand on the spot and turn 360°, slowly focusing on four corners of the room. Then speed up a bit. Then do the same turning around the other way. At first, because it makes you feel a bit worse, you have a tendency not to do them Do only enough to the point of feeling dizzy. This may mean only doing 1 or 2. Progress slowly. It has helped me and I do notice when I don't do them - which I didn't over Christmas and felt dizzy again - so maybe there is something in it. Anyway, positive is the right attitude Sue - and now I'm really jealous - Helston. How beautiful. Can't wait to get back down that way again. I just love all the rugged coastline. I feel I can escape. We do want to move this year, but still can't come down your way just yet as my hubby still is working (has to) to support me! Our intention is to eventually though - and get a lovely dog too. Keep in touch Sue xx. Ash - I had/have get all sorts of weird pains, tingling and sensations on the back of my head and could also hear my heart beat, but that was when my ears seemed quite full and blocked. It does go. Love and hugs to all, Gloria xx |
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Gloria Does sandie still post here ? I saw some of her posts from previous pages and saw shes had this 5 years! I hope shes doing better. You sound like your doing well with your VRT therapy gloria x |
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Ashley- i belive that is high blood pressure from Anxiety which is normal. i get it aswell. |
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Hi YALL! I just found this website THANK GOD! anyways i have had this wierd Labyrinthitis for about 3 - 4 months now and my Doc said the vertigo would go away after a week and it did but she also told me that the dizziness would go away after six weeks, and it hasnt gotten any better. i'm just wondering if this is normal to have dizziness for so darn long like this. Thanks yall Steven |
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Dear all, Hope you are all feeling a little better after the weekend. Gloria thankyou for the exercises, I did go a little mad and tried them all, only to regret it, still, I'm not going to give up and did just the first few - will keep you posted! Steven, sorry to hear you're suffering, have you been back to the Doctor had tests etc etc? I really hope the rest of the "Dizzy Folk" on here are feeling better. Love Sue xx |
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Hello everyone, Well I try not to post anything negative on here these days but have slipped so badly down 'the snake' that I need some reassurance myself for once instead of giving it out!! Dont know if I'm coming down with something (almost hope I am) or if I've done too much lately? I have had the dizzy/swirly/heavy head back again with severe headaches. Last night I had to go to bed at 6pm for a couple of hours (not done that for about 8 months)my head was so swirly & painful & full of pressure my ears feel full & sometimes painful. Oh dear doesnt sound good does it I just hope its not a full relapse & just a blip!!! At the end of this month it will be my 1 yr anniversary with this thing. All the shaky/vibrating feelings have come back too in my head & legs most wierd it like its all started all over again. I know I have to be positive & just think of it as a blip & in a week or so I will see more improvement!!! Anyway enough about me how is everyone else. Jemma glad all your ECG results were okay & hope you are all recovering from flu, did your ears/head play up more when you had it? Does anyone else get the ear stuff going on before they come down with something? Gloria We overdid it didnt we? I though I was fine with all the rushing around over Xmas I ddint need to sit down & rest of course I can fit 2 more in for dinner etc etc Maybe this is my punishment for having a lovely Christmas, how dare I assume I could have a nice time without suffering the consequences. Hope your neck muscles are loosening!! One thiings for sure WHEN I finally feel 100% I am really going to go out & make up for so much lost time!!!! Steven welcome to the site dont take too much notice of my ranting I will be okay again next week back to positive thinking. Hopefully you will be one of the lucky ones who recovers within a few months not everyone suffers for as long as some of us on here. My vertigo was only momentary then the continual dizziness/head fog/pressure comes & goes in waves & cycles after a few months so you get better days & weeks than others. That seems to be the nature of the beast until it finally disappears. well bye for now hope everyone else is okay :) Claire x |
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hi everyone Claire just wanted to reply to your post. I think I am over the cold/flu thing now and YES it definitely affected my labs symptoms. Makes you more woozy, off balance and very tired. As the flu got better, the other stuff improves. Sorry to hear you have had a relapse/blip. If you are coming down with something then that is probably why and even if you're not I am sure it is just a blip and you will improve in the next few days or weeks back to where you were. It is so true that this does not clear up in the normal way. Good days, worse days, relapses, strange symptoms but hopefully overall improvement (very slow). Steven it is normal for anyone with a vestibular disorder to suffer dizziness for a long time as we have all found out. Just hang on there, do what you can and you will start to see some improvements. Wendy I will let my mum know about the suggestions for tinnitus. It is a strange and horrible condition. She is going back to the docs today. hope you are doing ok? Donna - Emma from the Ilia/Emma Labs website tol me that it took her 3 years to turn a corner with this and even now she is still not 'normal' but she is a lot better and leads a normal life and can live with the condition. When I heard this I freaked out but as time has gone on I have tried to come to some acceptance that this might never go totally for everyone but it should improve and hopefully for most of the time we will reach a point when we can forget about it. I do hope you are feeling better and more postive this week. Gloria how are you? Strange about the diaphragm tightening isnt it! Mine has improved since I stopped exercising. Now got to decide if I start again and risk it going worse...not sure.... take care all Love Jemma xx |
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Hi all, Welcome Steven - like others have said - the dizziness is part of the aftermath of labs and does take a little time to settle. Longer for some than others. You have to be positive, try to carry on with your normal day to day stuff and know it will diminish over time. Claire - OMG - you see - how mad are we. Think we are feeling better -go about our day as we used to and not think we will suffer for it. So, the moral of the story is we HAVE to fit in some R&R. V. difficult when it is not in your nature to be like that and I'm not. Anyway, started Pilates this morning. All about core muscle stuff, breathing etc. I can see the point of it and the benefits, but it is a bit slow for me. I love a bit of energetic music to exercise to. So we'll see. Muscles and head still off, but better than I was a week ago. Just so want to be rid though eh?! Donna - haven't had any posts from Sandie for ages. She was having much longer and better periods and did think that she was really coming out of it. So I can only assume - all is well. You read of people having this for ages and ages and it scares the hell out of you. Donna you are young and everyone is so different. If you take all the people who have posted on here, particularly earlier - and haven't reappeared means most people get over this really quickly. Keep on in there. Sue - don't go to mad. It is so easy to do, as you think if you do loads then you will get better more quickly!! You will feel a bit off for a few days, especially if you haven't been doing anything previously. It is quite amazing how quickly the brain adapts, but you do need to do them every day. I have to change the location of what I'm looking at as apparently not only does that help the brain but also helps my boredom threshold! Good luck and onwards and upwards as they say. S - glad you had a good holiday. I didn't know that about Stugeron being related to Sibelium - very interesting. Any good signs yet? Wendy - the figure of eight VRT I have done. Claire on here gave me the exercise. It is good. As you keep walking around and around it does make the brain a bit swirly. I've progressed onto the turning around on one spot for 360 degrees now. I think if they said stand on your head and do somersaults - I would try in the hope LOL!!! Keep doing well. Jemma - I just accept all weird symptoms as related to this now which I'm not sure is a good or bad thing. Take your exercise gently - as I said it is so easy to be too robust and do more harm than good. At least we are moving around a bit more this year than we were last year. I have had a wager with a friend of mine. When I was younger I used to waterski a lot! We are both going to do it again this summer - in June. This has given me a good goal to reach in terms of getting fitter. I have something to aim for. I feel quite good about it - we'll see as time goes on and whether I stick to my routine or not. It was 10 years ago since I last waterskied!!!! See - the madness has returned. I wish I could say that I made this bet on the back of a few too many glasses of wine. Not the case though LOL!!!! Love and hugs to all, Gloria xx |
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Hello to everyone, Claire you are always the positive one, but seems you now need some looking after, hopefully you won't be down too long, you may well have caught a virus which has attacked your weakest point. Give in to it as much as you can, difficult with a family to look after. Gloria I have been going to pilates for a while now and although I find some of the moves difficult when the dizziness is bad, I just adapt them to suit myself. Love to all of the other members, this really is an exclusive club that nobody wants to join Love to all Sue xxx |
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Hi everyone, Thanks for your kind comments a few weeks ago. I have been meaning to post again but of course it's been the silly season! So I had a few bad weeks - went and saw my vestibular physiotherapist as she had been the only one who knew what she was talking about and just said that unfortunately people do go backwards with their compensation. She did all her tests and said that everything was still consistent with vestibular problems. So I was relieved at that as my biggest fear was that it was something worse. Then I got better for a few weeks and we had my husband's family come and stay for Christmas - which of course was really busy so went downhill for a few days after that again! Things are pretty much back to normal again but I am always so conscious of every little thing going on in my body and worry about worst case scenarios! Anyway I know that I just have to try and keep busy and stay off the internet! to not think about it. All the best to everyone Cathy |
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Hi all Jemma that is reassuring I do know that Emma still has symptoms I have spoken to her before and couldnt believe it I was under the imprseeion everyone gets better but I really hope shes doing ok . Just wanted to ask does anyone take anti-depressents for this? Im considering it at the moment as i have been crying a lot. I go to bed most nights hoping its gone and it never is of course. I wake up start the day and am like I have a mountain to climb today and am happy when I just get through the day and then I wake up and it all starts again after 16 months of this Im still anixous and panicky about what my head will be like today . This condition is very frightening and isolating isnt it . Thanks everyone for answering my questions x |
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Hi everyone, hope everyone coping ok. I still have continual hissing and fullness in my right ear. Its begining to make me feel so irritable as you can hear that 24/7 plus everyday noise around you, feel like screaming with it. May even have to have a trip to the doctors, will do anything not to though. Claire, i think what you said in an earlier post hormones deff play a part in the balance issue. I know a few days before my head gets very fuzzy and deff feel more unbalanced. Im sorry to hear you are having a bad blip. It prob is just the after affects of christmas as you were doing so well before. Also i find when my routine changes such as the xmas hols, it affects me for the worse so fingers crossed after a few days of taking it easy (not easy i know), you start to see an improvement. I have got parents evening at the school this evening, dreading it as i know this is my worse time of the day. I am much better earlier in the day. Oh well deep breath and all that. Gloria, thanks for all the VTR tips you post on here for everyone, you are quite an expert, perhaps when you have recovered could be your new career. being a VRT specialist, (you would have plenty of experience) The water skiing sounds like a good goal for you to focus on. You have a few months to fully recover! Steven, welcome to this brilliant site. I have only just started posting on here although have been suffering with this for just over a year. My vertigo went after about a month, and like many people am left with the feeling of being unbalanced. Its seems like everyone, you start to make a recovery and then wham seems to come back just as bad. the only good thing we know we will all fully recover one day. To Jemma, Donna, Ashley Sue and the rest of the gang hoping things all ok with you all. Love to everyone, Wendy. X |
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Hey all Well what a couple of days I have had! I had a massive leak in my apartment!! ARGH! I got out of the shower to find water pouring through my bedroom, hallway and master bathroom ceiling. I live in a duplex apartment and basically my pipes had blocked causing the washer to leak all over. The boyfriend was out so I was so stressed trying to sort everything out. By the evening i had such a bad tension headache and neck pain which of course caused me to feel more dizzy. Yesterday I didnt feel too bad and thought I had got away with it effecting me too much but today I feel really off. I had a dream that my dad was doing 360 degree spins in his car and I was trappe din it screaming to get out because i felt so dizzy. I immediately woke up at this point but i wasnt dizzy at all so was my head really spinning or was it just a dream? It did make me feel really anxious and from that point on I have felt unwell all day. I was only thinking the other day that I have not had the bad tingling in my head and body for a long time and today guess what has come back?!! This symptom really makes me feel awful because I get really bad hot flushes with it. Anyone else experienced this? I hope I am not having a relapse :-( Wendy - thankyou for your kind words but i don't think i do deal with it that well. I cope in certain situations and avoid all others which is probably not the best thing to do. I got this horrible illness after a water infection! unbelievable eh? Jemma - glad you are feeling a bit better. Am I right in thinking you gave up your job due to this illness. Is that because it made you have a major relapse? I have my work coming out to visit tomorrow to discuss returning part time but I don't know if I can cope with it. Have to pay the bills somehow though!! Claire - so sorry you are feeling rough again. I have had some old symptoms return these past couple of days. I think it is just the result of us doing too much and getting ourselves a little stressed out. Lets hope we improve again quickly. Everytime I get this tingling and hot flushes I can't help but think I have something more serious. It really freaks me out. The doctors have told me I don't have MS but at the same time they have never been able to tell me what causes it. Gloria/shirley and everyone else - hope you are all well. love to you all Ashley xx |
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does anyone know if driving to colorado, from a elevation of missouri will affect my Lab? me and my frinds are going house hunting for a week, and we were going to visit the rockies aswell. any info would be AWESOME!!!! |
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Hi I just wanted to reply to Ashley about my work situation. Yes to give some background for you I did give up due to this illness. I was a Solicitor and worked full time 9 - 5.30pm every day for 5 years until this struck. After a month off, I returned to work doing 4 hours per day from 9 - 1pm each day. I was terrified about returning and was nowhere near ready for it. At that stage I still did not know what was wrong with me and was having serious anxiety and panic attacks and very bad off balance feelings, severe fatigue etc. Because I did not have a diagnosis I felt I had to go back because I was having to go to the doctors every week begging for a sick note and work were nagging me about when I was coming back. Anyway I just about dragged myself through each day. For the first few months I was crying several times a day because I felt so bad (trying not to let anyone see). I lost 2 stone in weight down to 7 stone and although colleagues were sympathetic it was so hard because I could not even tell them medically what was wrong with me. After about 4 months I increased my hours from 9am - 3pm each day. I could do the work but it was a battle getting through each day and I had no energy at all just had to lie down from when I got home until bedtime. I could not interact with people at work because I just had to focus on keeping balanced and did not want to move my head or eyes from my computer screen. Donna you are right this is a frightening and isolating condition and none more so that when it is at its worst and you are with people who dont really have a clue what it's like. After suffering through last winter with endless colds, flus etc and all the symptoms of this thing, I was getting really run down. My neck had started hurting as I was compensating for the dizziness, my lymph nodes were swelling and I felt so run down. On top of that my work load was growing and I was getting more and more cases to handle each week. It would have been hard even if I had not had labs but to deal with the stress and cope with all this work was becoming impossible. I was expected to handle more and more cases depsite working 10 hours a week less (and being paid less) and feeling so bad. By May I had reached breaking point. Whilst the dizziness was slightly better, the neck pain and fatigue were getting unbearable. I went to the doctor and after 2 weeks off they said I had to return to work part time. I knew I couldn't go on at that point and agreed with my boyfriend that I would leave. Thank god for him, I think he saved my life because I dont know what I would have done if I had to continue as things were. I spent several weeks in bed totally exausted after leaving in May then slowly built my energy levels up by taking it easy. Now I can cope with my days at home doing bits and pieces and taking regular rest. I try to avoid stress as much as possible as I feel my nervous system has taken such a battering. Sorry if this is too much detail but I guess what I would say to you Ashley or anyone returning to work from what I have learned is this: 1. Dont return unless you have to and feel ready to. 2. Make sure your employers know what is wrong, the kind of symptoms you have and set boundaries for them on what you can and can't do. 3. Dont even attempt to go back full time straight away! 4. Make sure your employers and colleagues know this is something with no definite end date so you cant say when you will be able to increase your hours or return full time etc. (I always felt guilty leaving early even though I wasnt being paid for it). 5. Be mentally prepared to feel bad especially at first. You will feel a sense of achievement when you get through it BUT be careful not to push yourself too hard as it will make you worse. In hindsight I am glad I went back to work for a year even though it was the hardest year of my life because otherwise I would have been wondering all this time if I could have done it and how I would cope. Now I know the answer to this and I can say for sure that I gave it my best shot but in the end I had to take time out for my own mental and physical wellbeing. Hope this helps a bit. Love Jemma xxx |
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Jemma you really are a trooper for carrying on working with this honestly! I read oyur posts and sometimes it just makes me wanna cry when I see what people have to give up and go through because of this condition and it isnt fair all you want to do is get on in life! I dont blame you for taking a break What do you have ? and how long has it been for you? Ashley I have dizzy dreams sometimes and also dream Im drunk I find this particuarly distressing as its my only escape . I hope it doesnt happen again to you. I have two small children they are aged 2 and 4 I also used to work as a carer and I want back Sept I lasted 2 weeks as i came home every night spinning so badly in my head and was so worrying about work and looking after the kids I just went into meltdown and handed in my notice . I did feel like a failure but being a mum is hard enough without working and having a disorder isnt it. I was such a full on mom before playing with my kids etc and its hard now Im grateful on the good days when I can play with them . Over Xmas I dont know what happened but symptoms got so bad my hubby had to have the week off as I couldnt care for the kids I felt so guilty. Im glad now my relapse lasted 10-12 days and im back to my 'normal' dizzys at the mo but worry about that happening again hubby cant lose his job too! sorry Im rambling everyone lol ! |
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Wow Thank you for your replys!! :) I really have had a blip but hopefully will come through it again, no sign of cold or flu as I was expecting but strangely my husband has experienced dizzines & full headed feeling the last couple of days he said when he laid down in bed it felt like he was on a fairground ride, I said welcome to my world for the past year!! I really think its just a wierd virus maybe again & that he is feeling a touch of it too. At least now he may understand why I have been a little 'miserable' for the past year!!! Gloria, Pilates good idea i used to do it regularly then syarted classes again last Jan just as all this began so had to give up as was too scared of spinning out in the middle of class. It will hopefully help you alot & cant do you any harm. As for the water skiing!! Go you what an aim for you you never know could be the best VRT yet!! Sue think you are right on the virus thing so back to positive thinking that it WILL get better Cathy nice to hear from you again, your post sounds very familiar we really must learn to know our limits! Donna sorry to hear you feel so low its really hard not to, it is isolating but at least we all know exactly what you are going through x Wendy, Parents evening!! Aaggh I think I have sat through at least 4 of those since this all started & I am the same as you in the evenings shame it couldnt be parents mornings. The hormonal thing has def kicked in although my cycle has finished now so fingers crossed for improvement (well for 3 weeks anyway) Ashley Your pipe problems sound like a nightmare not good for a dizzy head, try not to worry too much about the tingling/flushing my hot flushes were so bad at the beginning of this I thought I was reaching menopause! I havent though. The tingling drove me mad too it is all part of it there is no real explanation I dont think & the docs are so useless they know absolutely nothing about it. I dont get the tingling anymore that subsided more when my anxiety did but strangely went for a cup of (caffeine free) tea with a friend today & when I got in my car looked in my rearview mirror & my neck & face was completely red & blotchy god knows what my friend must have thought, she didnt say anything :). Jemma Just read your post I didnt realise you were a solicitor how stressful for you no wonder you couldnt work with this thing sometimes its hard just posting a bit on this website without all that brain work going on in a full days work! Hopefully when you recover you too will have a new zest for life & your career can take off again. Hows your website going? Anyway that was a long one sorry, hope it hasnt given any of you a swirly head :) Claire xx |
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Jemma, thankyou for your latest post. Yes it does help hearing about your return to work. Although I didn't have anywhere near the responsibility or high profile that you had in your job, the guilt and the worry about not being able to do the job to the best of my ability was awful. I definitely understand - I regularly feel really guilty for not working and contributing towards the family household. I also think because this illness has peaks and troughs, you often don't know how you are going to feel from hour to hour, let alone how you feel day to day. I think that it is very difficult to explain to other people how you feel, as you often look perfectly normal. Wendy - I understand about the hissing mine is worse in the evening, but I've lost the fullness - for now! Does anyone else feel worse after car trips? I think I get a form of travel sickness, which then sets off the vertigo. Love to you all Sue xx |
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Hi Ashley, I had the tingling and hot flushes as well. I also thought I must have MS or something. It was really worrying and none of my doctors took me seriously saying it must just be anxiety but I was never convinced. I did read somewhere at the time that a really bad virus can cause the tingling - I think it's like nerve damage. Anyway, it did eventually go away. Claire I also went and had my hormones tested thinking it could be menopause! I am sure that the dizziness got worse at different times in my cycle as well. Take care everyone Cathy |
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Hi All. Seems such a bad time for everyone. Its awful. I really didnt cope well with parents evening. We had been there for about an hour and had seen 5 teachers and the last apt was late, by this time the strip lighting in the school had made me so dizzy had to miss the last apt. I was so frustrated when i got in i must admit had a few secret tears as just felt absolutely useless. Felt even worse as one of the mums had just finished her chemotherapy and she managed to stick it out. The thing with our illness it is invisible to everyone, and on the outside i think i have looked the healthiest i have ever looked due to not working and stress that comes with that. Feeling really frustrated today with it. Jemma, you were a star coping with your job for that amount of time. Dont know how you done it. Enjoy your rest! Claire, my husband had flu over the xmas hols. He did not move out of bed for 2 days and was ill for a week and getting frustrated by the end of it. I was mean and said to him i would love to be ill for a week, try being ill for a year. He has been so good about it though, although sometimes when i go on about the different and weird symptoms we all get, he does seem to drift of a bit! Think he is getting bored and just wants me to be better. Hope you get over your bad blip soon. Donna,you are doing brilliantly having to cope with young children as they are so demanding. Im glad mine are older, although especially now im not working i do run round after them more than i should, think to compensate for me not working it is a guilt thing. Ashley, hope your pipe thing sorted out, Since having this things like that are even more hassle to sort out. I too get hot flushes, i put it down to this alien illness that has to try and come out of bodies anyway it can. I dont get tingling but lose circulation in my fingers to the point where i have yellow fingers and lose feeling for a while. Great isnt it. Take the advice of Jemma about going back to work. dont over do it. Sue, i agree wth exactly what you said abount not knowing how you are going to feel from one day to another. I really feel the guilt of not working. I think that is why i compensate by doing everything for everyone at home. Gloria. have you been practising for your water skiing in this heavy rain we have been having. Hope you are relaxing more after busy time at xmas. To all the rest, look after yourselves. Much love, Wendyxx |
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Jemma – thank you for your advice on returning to work – I spoke to my employer back in September about having a phased return to work, as requested by my doctor, but he didn’t seem too keen, in fact he said he didn't have enough work to give me even for the 15 hours I requested. I have contacted ACAS for advice and they have said that as I am still employed with him I can return to my old position and he has to accept that. Apparently if he sends me home due to no work then he still has to pay me. The big problem is I know I would not be able to work a 40 hour week. In fact the week after I asked him for part time work I relapsed and have only recovered from that. On a good day I know I can do the work, and if there was a guarantee that I would not go back down that slippery snake I would do it but with this condition there is just no guarantee. Claire – what on earth is going on, you were doing so well and I had such high hopes that this was it for you. You know this is just a blip and it will pass just as they always do. Those flipping hormones, it's just the same for me, but as I am 50 this year (eek hate saying that) I am wondering if I might be going through the change as I am now starting the hot flushing malarkey. The joys of being a woman – HA. Glad that in your last post you sounded more positive. We will beat this thing Claire – we just have to keep going and believe it !! Gloria – I love reading your posts, I don't know if anyone has ever said this to you but you have such a good energy, I can feel it coming from your posts and it gives me such a boost. Thank you so much for that x You go for it with the water skiing – we all need a goal and what a fantastic goal to aim for. Ashley – you said something in your last post that really surprised me – you said that you got this after you had a water infection. Well so did I but I never put them both together. All the symptoms you have described I have had. I also used to get a lot of facial tingling as well as numbing in my nose and lips. As time goes on it does seem to disappear but every now and again my bottom lip does still go numb but I'm passed the point of worrying about it now. Well a quick update on me. On the whole I am still going up that ladder although I have still not reached the top. I now have a lovely PT who says she is positive that she will get me to 100 per cent. She thinks the reason I have not compensated fully is because of my neck and also that I might have some remaining crystals as when the ENT doc did the eply he did not put me into the last position when sitting and she thinks some remaining crystals may have gone over into another part of the ear canal. So the plan now is to keep up with the neck massage, do VRT for a couple of months and if I still experience the dizziness on my left side then perform the eply again. Now doesn't that sound so simple – LOL. Also does anyone else have trouble with driving ? Weirdly I am ok as a passenger but not as the driver. I find the movement of oncoming traffic and roundabouts difficult and also when I stop I get the wooooooer feeling- you know the getting off a fairground ride feeling. I really want to conker this so any ideas would be greatly appreciated. Donna, Sue, Wendy and anyone else on this site, hope your all ok. Love and hugs Shirley x |
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so people GREAT NEWS today is the best day i have had since this lab started!!!! I FEEL SO AWESOME!!!! it might not be gone, BUT LORD OL MIGHTY DO I FEEL LIKE A MILLION BUCKS!!!! its been 4 months, and i started out with a bad week THEN BAM i have no symptoms beside the blurred vision!! :D even if i have another bad day this day has totally gave me new hope!!!! FYI i have not taken any meds at all besides when i took xanax, and mezicline for about a month then when that didnt work i fegurd i would let my body heal on its owen even through the worst. yesterday i woke up at 4 in the afternoon and i havent slept since i think its because i feel so good, and all the energy i have gaind that was stored away from so much sleep has hit me IN THE FACE!!! i will deff update on how i am, if it comes back or not!
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Hi all, Great to hear from so many of you. Cathy - I didn't expect to read posts from you again. So sorry to hear of your relapse. The nature of this beast as I think most of us on here now realise - until it really decides to go for good. Wishful thinking?!! Claire - your poor husband. Although a bit of you must think now you know what I'm going through!! Is it a bit like 'manflu' - maybe there's 'manlabs'!! If this wasn't such an awful condition that could be quite funny, but nothing about this thing is funny. Hope he is OK and you are up that ladder again. Have you resorted to taking any meds. I have taken some Stugeron. Helps a bit but doesn't get rid of the fuzzy head and headaches though. Have also gone back to ding my VRT 2 a day. Maybe the answer is to do them ALL the time?!!! Me - well am having a really horrible 'blip'. Been like this since after Christmas now. As you say Claire, the headaches/heavy head dizzy spells. Nightmare. Really thought I might have seen the back of those. Have had blips, but not like this - back to how I was some months ago. Only hope I'm going to come out quicker this time. That said, I'm determined to not to let this rule my life. That in itself could be the wrong attitude. I wish I could not be like a whirling dervish and have to do everything at a fast pace. I feel like I'm wasting time to sit and rest. Not good, must try harder as my VRT physio would no doubt say!! Shirley - thank you for your lovely comments. I have always been an upbeat person, but this has tried me to the very end - like us all. I'm sorry you are having problems with your employer. People are so uncaring sometimes. You are right about the uncertainty of this condition. When I have felt OK, I've thought about getting a few hours work of some sort, but this last couple of weeks or so have proved to me that I cannot commit to it yet. I, like you Wendy and Sue, do feel uncomfortable about not contributing to the finances. My hubby does contract work and lost one of his contracts just before Christmas which means belt- tightening and more guilt on my part. Thankfully, he is very understanding and doesn't expect it of me to go to work, although he wishes I could find something else to do rather than notice all the odd jobs around the house (as I'm at home so much) and nag him about doing them!!! Jemma/Donna/Ash/Wendy/Sue - thinking of you. I'm hoping that when brighter better weather comes along will help us all feel much much improved. Going for a rest now to try and calm my head down. Love and hugs Gloria xx |
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Hello fellow sufferers!! Whats going on why are we all relapsing is there a Labs epidemic?? My husband is really suffering with dizziness/nausea he drove home at lunchtime & said he felt like he had travel sickness (which he does suffer from). Gloria I am afraid I did say to him "welcome to my world" poor chap dont think he'll get a lot of sympathy from me :( Wendy, listening to your post is like listening to myself, quite comforting in a way. My husband & girls have also been very supportive & hubby has listened to my woes & symptoms & I too think he must be getting bored with it now in fact I think everyone must be getting bored with thats why I dont say too much these days (except on here). I also look 'well' these days so people think you are better & when you say you still aren't right they all seem surprised I often wonder if people think I am putting it on. Shirley, I feel the pressure in my head when driving but the concentration seems to take my mind off it however I'm not brilliant as a passenger, dont like night driving too much either too many lights that distract the vision. Anyway getting swirley now better go & rest Claire x |
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Hi all, Sean - BRILLIANT! That is fab news - really hope for you that this is your turning point. You are young and, for most at your age get over this monster very quickly. Get out there and start living as you should! You said you were going to Colorado - house hunting? What a place to go house hunting in - sounds great. Go and enjoy yourself. Take it easy though and chill out at times so as not to overstress your body into a relapse. Keep us posted with how you're doing. Good luck. Claire - know what you mean about not really mentioning this to anyone anymore. As you say, too, we do look well. It is so difficult to convince people that you feel so rubbish and look fine. This morning I feel like I have had a night out on the tiles and drank for England. Are you coping with it all or are you taking anything to help? I'm trying not to take anything, and, don't know if anything really helps anyway to be honest. Swirly head or not, the supermarket beckons as the cupboards are bare! Take care all, Speak soon, Love Gloria xx |
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Gloria, I havent taken anything 'yet', was considering taking a travel sick tablet before tonight as its my husbands 'xmas' works do- bowling!! I missed it last year as that was when this all started so determined to go this year, who'd have thought back then that I would be feeling exactly the same a year later :( . I hate that hungover feeling every morning when the dizziness is bad also getting all the wierd vibration/shaky feeling in my left leg. Not looking forward to tonight for one the menu is everything & chips!! (january diet) & secondly the noise, the bright lights, trying to focus on the scores on the tv screens AAArrggghhh!! I'm sure it will be fine. been to the gym for second time this week also had a power walk yesterday & started a Pilates DVD I used to always use, was okay with it didnt feel too spinny on the lying down ones!! I know i prob shouldnt be doing all of that but I think it's kill or cure the exercise helped me so much last year. Will rest up as much as poss this weekend after tonight there are no pressing engagements so will keep it that way!! Hello to everyone else xx |
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Hey everyone I can't believe how many of us are suffering at the moment! What have we all done to ourselves?! I think mine is the result of a very stressful week; but then sometimes I think maybe I try and find an explanation for these relapses when really there isn't always one. Jemma - thankyou so much for telling me about your job. I really don't want to give up my career but I'm not sure how I am going to cope. Like yourself, my job is extremely demanding. Starting at 6am and finishing at 8ish can be quite the norm. I have a meeting on Monday with my employers to discuss a phased program back to work. The trouble is I also want to complete the last stage of my ACA qualification. I should have finished it last year but this illness totally ruined that. The exams are so demanding even for someone who is 100%, but I can't give up hope yet. It is so important to me to achieve this; I have worked so hard for it. Do you hope to return to the Law profession one day? Claire - your poor husband! I would not wish these symptoms on anyone. My boyfriend went dizy briefly the other day ans I couldn't help saying "welcome to my world" LOL! I hope you enjoy your evening bowling. I don't do anything like that anymore. I wish i had the confidence to. When you say you are not good as a passenger do you feel more dizzy and sick? Have you always suffered from travel sickness or is this purely the result of this illness. My specialist said that when I am over this I should no longer feel dizzy as a passenger; I hope he is right! Shirley - Yep a water infection was the cause of this beast! I had an infection and then it went after taking some antibiotics. A few days later it came back and then I was hit by a sudden attack of vertigo and the rest is history as they say! The docs said it must have been viral all along and because I was run down my body could not fight it and it spread to my ear. In relation to driving, I have had major problems in the past. I totally know what you mean about the coming off a ride feeling. I also felt like my eyes could not keep up with everything that was happening. Back in July I had a bad dizzy spell on the motorway and my brother had to come and get me from the service station. It frightened the life out of me and I just stopped driving. Nothing moved visually to me but my head felt so woozy inside and when I stopped the car I felt like I had just finished on the big dipper! Anyway recently I decided to start to try and overcome it as the docs said I should start getting my confidence back with it and the more I did it the easier it would become. I started driving with someone accompanying me on short journeys and now I can do short journeys on my own and I have now done the motorway with my boyfriend with me. I still feel more woozy when i stop but try and sit for 5 mins when you stop and it should pass. The jelly legs when getting out of the vehicle does star to become less frequent; and if it does happen then try and stay calm and your balance should return within a few mins of walking around. Wendy, Gloria, Donna, Cathy and everyone else - thinking of you all. Ashley xx |
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SO its still been good since i last post, things do seem to be getting WAYYY better now i can listen to loud music without going CRaZy!! xD i can shake my head un, down, left, and right without getting the dizzy effects from lab. it also seems like i felt fluid drained out of my ear. hopefully its the infection leaving my body. i still have blurred vision which idk about since its not my head all out of WaCk! hope everyone is doing good, and taking it easy :] i'll keep up on the updates to show if i still get better, or worse. THANKS FOR ALL THE SUPPORT!!!! |
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Sean(Comment Jan 7th) Darling you have just made my night, I'm sitting at my computer and it's nearly midnight I have to work tomorrow and I have 5 teenagers laughing and playing their oh so enjoyable(not)music and my head is bouncing around 24/7. And most of the east coast of Australia is under water. And you my sweet one has made me laugh for the first time in days. Sweetie, Sweetie please promise me you will not touch the Marijuana all it will do is play with you head. I promise you. You think you can't think straight now , wait until your stoned on that rubbbish. Believe me I know what I'm talking about I'm an old hippy from years ago. I'm sure everybody on this site who has had a puff in the past will agree with me. Just remember the secret to this Labs is try and stay as H A P P Y you don't need drugs. Go and do something stupid with you friends, play a prank on someone anything that makes you laugh. Keep lots of yellow(for happyness) and purple(for knowledge) colours around you. Love Aussie Donna |
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Good day to all! I'm feeling tremendously better since I first wrote in December. I was still despairing at that point how this crazy dizzy thing could reappear after months of really nothing at all.....and then just stick around the way it did. I was getting really worried, especially when sometimes when I stopped driving, that I got dizzy (once with vertigo at a red light OMG! Freaked me out.). I was fine moving in a car, but the stopping was unpleasant. I had to be careful to never look to the side until I got moving again, even just inching forward helped a lot. But things have cleared up considerably since I flew out to my parents' place before Christmas. I was worried about my ears since I'd been having them "full" so much and having difficulties popping them, but just as a major weather/pressure event caused all this to come back, I swear the big ear pops on the plane helped to even me out again! I had no issues whatsoever on the flight home! The vrt nodding exercises might have helped too :) I'm back to having sluggish-popping ears again, and the tinnitus is 24/7 permanent I lament, but most nights I barely have any dizziness at all now and can fully sleep on my right side again (that side I called my vertigo side!). How my left shoulder feels relief now! I only feel a bit woozy now during major weather changes (like upcoming snowstorms and chinooks) and if I'm tired or too hungry or concentrating too hard. I even started reading a novel, something I had to avoid for a few months. I'm not ready to paint the walls yet as I had planned for a project this winter, but maybe I'll put that off until summer. I'm not so secure that I can do that much up & down for a while yet. I've picked out a fab smokey-grey-purple for my bedroom that I just have to see on my walls! So I am optimistic and hope that I am leaving the worst behind me now. I live alone and felt a tad isolated by the experience. Only the constant buzzing in my ears now to drive me batty (although i am surprised at how I've adapted to ignore the noise). Anyone ever get over tinnitus induced by labyrinthitis? Take care everyone! E.
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Hi Guys I am over the worst relapse Ive had in a long time but symptoms do not seem as settled as they were. Has anyone had any success with MAV preventatives? Its quite annoying having this everyday although I can function through symptoms again its very hard on the soul feeling like your on a boat 24/7 . Does anybody know of ANYONE who gets better its been 16 months and does VRT really work Ive heard mixed reviews as Im told I have MAV and maybe an upset right ear which I have T in constantly and sometimes it pops etc . Today it feels like Im being pulled to one side a lot . Ive heard the two year mark is a turning point for most sometimes three but my life is on hold waiting for symptoms to die down or maybe one day go :( Hope everyone is doing ok xxx |
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Hi all, E - so pleased to hear your good news. The fact, also, that your flight didn't affect you has given me hope about flying off to somewhere nice! Warm, sunny climes would be fab right now - the UK at the moment is SO depressing with horrible weather. It really is a good feeling to do things that you haven't been able to do for a while - try the painting - it could be good VRT LOL!! The tinnitus, I find, does fade, although returns if I'm having a bit of a blip (like now). Keep us updated with your great progress and good luck E. Aussie Donna - good to hear from you again. Just reading your post made me laugh out loud too! You sound like you have had this for a while? How have you coped - especially with 5 (noisy?!!) teenagers AND working? I admire you already! Well, I'm back down that slippery old snake big time. My head, neck and shoulders feel like they are in a vice at the moment. Strange thing is that I don't have too much swirlyness, just feel unbalanced and all the muscle probs. Thought I was doing quite well too - HA HA HA!!! Ash - how are you now? No more leaks I hope?!! This is a monster thing to have - just when you think you have got over a symptom for a while - back it comes again. AAARRRGH!! The sweating thing is weird too. I get this. It was a nightmare earlier on, then went away and now comes back when I'm not too good. Whilst not pleasant, I was glad to hear you experience that too - I thought for me it was an age related thing!! Any progress on your work situation? A guy called Gary who posted on this site earlier, had this for a good 18months-2 years, but at about 2 years of having labs he was feeling well enough to go back to uni and study. So, take your work situation slowly, but you will get there Ash Claire/Wendy/Jemma/Sue/Shirley/Donna and all - hope thing are on the up and up. S and Ish - if you are looking in - how are things? S - any progress with Stugeron? And Ish - did you get the results of your lyme test? Love and hugs, Gloria xx |
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New to the site, Have read all the comments. It is truly re-assuring to know that you are not on your own. I am 7 weeks down the labs road and have all the typical symptoms (the lot). Doc has just refered me to ENT (at my request) as I am sick of being messed about and fobbed off. Doc says he is pretty sure it's labs though - as it has been accompanied by some sweating etc (unless that's linked to the anxiety element - which it may be). I will come back to this page again - and give you the story of my journey thus far. It will shock and ammuse in equal measure. My tips so far - they may not suit everyone - we are all different and respond differently. Take em or leave em - it's upto you. They helped me. 1. Get on the vitamins etc straight away - C, B12 - Ginko. Give the old immune system a kick and a fighting chance. 2. Take some of the meds on offer to make life easier and get you through the worst days with some level of normality. A low dose valium (diazapan) when needed and some of the balance meds can work wonders. You can slowly decrease the balance meds over time to allow for any compensation. 3 Get out and walk when you can - if possible take someone with you. Do not talk about labs. Talk about anything else that takes your mind off it - most of all laugh if you can. For some people the walking is easier in the day - for others its at night as it's quieter on the eye and ears. 4. Push the docs when you think it's necessary. Don't be affraid to make a nuisence of yourself. Take your partner of friend / relative with you. Let them provide support and let the doc know what you are going through. They are useful in letting the doc know what you were like before the illness - which was important for me. My wife was a godsend in this respect. 5. If you want to watch TV to help with some of the boredom - i found that a small screen (portable) TV at about 12 feet away in the bedroom was OK. Seemed to cause less of a prob with the eyes and hence the dizzies etc. In the begining I started watching lying on my side with one eye covered - then as things got easier was able to use both eyes (still lying on my side). Now can confortably sit up and watch a full length film no prob. I also have a small light on elsewhere within the room - do not watch the TV in a darkened bedroom. 6. Be wary of the panic / anxiety aftershock. Know it's coming and get support with it. Try to avoid the meds if you can. For some this may be worse than the labs - don't let it beat you. After a few weeks I could feel it taking me down and I am still fighting it. 7. Try to eat well. That's it for now - I will report back any stuff I found useful and further info at a later date. Had a little drive in the car today - couldn't have done it 2 days ago. Brought a tear to my eye !! First time behind the wheel in 7 weeks. Keep fighting - you will win in time. Best Wishes to you all. Binx 1965 |
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Hi all I had a couple of reasonable weeks but seem to have slipped a bit, as last few days been more swirly headed and ear has been clicky. Ugh! Donna glad you are over the worst of your relapse. I do think relapses are part of this and not necessarily a sign things are going worse overall. Virtually everyone on here has setbacks every few weeks and as long as your condition is a stable one, ie not bppv or meunieres then you should improve. I am not sure about MAV, are you taking anything for that? I have read that the experts consider a recovery in 2 to 5 years as quite normal for vestibular damage. Some people may go on getting symptoms for the rest of their lives but things should improve even in the worst cases. E and Sean so glad you are improving. Welcome to Binx, you seem to very positive and at least you are seeing improvements which is reassuring at 7 weeks! aussie Donna have you recovered from labs? You sound very accepting of it and positive about life. Ashley did you have that meeting with your employers about returning to work? Hope it went well. Gloria I can empathise about the slippery snake. I did some improvement in my balance in December but had that chest pain. I stopped exercising the chest pain has pretty much gone but my balance has worsened again! Its hard to know what to do for the best isnt it. Everyone else hope you're all ok. Jemma xx |
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Hello all, Think I pushed the boat out too much yesterday. Felt particularly well - eyes good / tinnitus abaiting / balance good / no neck pain / little or no ear pressure or desire to keep poking at them to clear them etc. Had a little drive in the car - with no problem. Had people from work come visit. Went in (and out) a few small shops for confidence. Lighting in the big places still gives me the swirl and shakes instantly - feel I am going to collapse and have to hang onto stuff. Also went for a 20 min walk in the evening. I did more yesterday than in the previous 7 weeks put together. Guess what !! Currently lying in bed completely drained and wiped out. Although luckily no worsening of the major labs / head symptoms. Although I did have a bad tension headache last night - it was gone this morning - thank god. As far as the meds go - I am currently on a reducing dose of Prochlorperazine Malate. I seem to have benefited from this and will now stick it out. Think it also helps with some (just some) of the obsesive thinking / anxiety as a side product. Even if i continue to make steady improvement - i will be keeping the ENT appointment. Got to see this through. I predict my worst issue moving forward will be the panic / anxiety side of things. I tried to carry on as normal when this first started - not knowing what it was. Tried to drive and do everything (i mean everything) else - big mistake !! Think I have subsequently generated a few phobias / anxiety / panic triggers. I should have taken it easy and visited my doc when i first had the problem / symptoms. Not waited a week till I thought i was collapsing / having a stroke / heart attack etc. BANG - too late - panic attack !!! Thankyou very much !!!! The biggest battle (i fear) will now take place in my head as I try to subdue the post viral anxiety demons. I do seem to believe that your body will overcome the initial inner ear virus in 3 - 4 weeks - and what some of us are battling with is the post viral fall out of this horrible (and i do mean horrible) illness. This could go on for months or even years. I have asked my doc to run another general panel of bloods next week - to look for indicators of any viral loading etc. I might ask him to throw in Lyme (if possible) for good measure. Take care of yourselves - and each other !! Keep fighting every day !!! In the next few days I will post my story. Regards, Binx 1965 |
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Hi all, Jemma - lovely to hear from you. So sorry you have joined me on that snake again!!! Should have shut up about not being so swirly headed. Today has been like 10 months ago!! What the heck is this thing doing to us?!!!! Feel really groggy even though had to cope with an aged auntie of mine coming over for lunch. Didn't say too much - thankfully she can talk for England - so just had to nod in the right places (bit of extra VRT LOL!!!). Joking aside though, have felt a bit rotten again. Oh normality where are you?! We're hopefully going off to Devon for a long week-end. Just hope the weather stays dry. Don't mind the cold as long as it is bright and dry. Some long coastal walks to clear these labs cobwebs from my head. Today made me realise that any thoughts of returning to some sort of work are out of the question. Even though feeling bad, but at least am at home and can deal with myself. Any plans this year Jemma or, sensibly, taking things slowly? Binx - hi and welcome. Sorry you have had to join our band! This is such a scary thing when you first develop all these symptoms. Even worse is not knowing how long it will be with you. You give good advice, although I do try and keep off of meds as much as poss, but do take them when I have to. Certainly take all the vits though. I have resorted to taking valerian tablets to help with anxiety which are good too. I think everyone has to find out what suits them. Great to hear you also managed to drive your car - way to go!! You keep strong too and keep in touch. Donna - keep on in there. Relapses are a nightmare. You have a little false hope and feel better, then back down again! I'm there at the moment! Hugs to you - ooo. Well, I think it is early bed for me tonight and I'm afraid a Stemetil! Not had one of those for ages! My positiveness is a bit wobbly, but hanging on in there! Love and hugs, Gloria xx |
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Hello everyone, Well I have been feeling a bit better these last few days, but don't know why or what I've done to make me feel better. If I did I'd be posting it on here. I'm taking 400mg of magnesium a day as well as my prescribed Verapamil and 10mg Amitriptaline at night. Ash and Gloria: I too get very hot at night and am undecided whether it's age related or dizzy head related! Have had blood test done, so all will be revealed! Hello to Binx, it's such a horrible invisible illness and unfortunately there is no normal track for this, sometimes it goes quite quickly and then it can just run and run - unfortunately I'm the latter type! Back to my positive New Year Resolution, I went back to Pilates and apart from being careful getting up and down and tilting to my bad ear side, I felt very good. Has anyone had any success with the WII FIT? Jemma - I really hope the 2-5 yr recovery is right as I unfortunately hit 5yrs in April. I do think that stress has a lot to do with this illness, I had a particularly stressful year last year, and although it's not the cause of it, stress certainly doesn't help the recovery time, it gets to be a real vicious circle. Heres hoping we all get a reprieve from this dreadfull illness. Love to you all Sue xx |
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Hi Sue, I'm thrilled that you, at last, are feeling better and hopefully will carry on doing well. I took 400g magnesium for my heads last year, but it had an awful effect on my stomach - made me dash too much to the loo!!! I have got this Sibelium from my doctor that Ish on here talked of. It is another calcium channel blocker but linked to the Stugeron family and is known for it's properties in helping vertigo related issues as well as migraine. I want to wait and talk to my neurologist though before I start to take it, because it isn't licensed over here although specialists do prescribe it - so I just want to make sure. That appointment won't be until goodness knows when though - NHS and all that! Also, last year my hubby bought me a Wii Fit. It is a lot of fun and I think the balance exercises helped. I stopped doing it for a few weeks before Christmas and I think that, plus I wasn't as conscientious about doing VRT (too much else to organise) is an added part of why I am having this relapse. Don't know for sure. If you can get one, there is loads of things you can do and other cd's to buy to go with it. I recommend it. Anyway, Sue, keep on doing whatever it is you don't know you're doing - LOL!! You deserve to be rid of this after your lengthy penance with labs. Lots of love, Gloria xx |
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Hi everyone, havent posted for a few days, dont know where this week has gone. Had lots to sort out early on in the week, normal sort of stuff, but feeling the effects today. Heavy head, realy stiff neck. My bad ear still playing up, and just feel so tired. Gloria, made me laugh about lunch with your aunt, i have a friend the same, just have to nod in right places as these days am happy for her to do all the talking. Hope you feeling bit better soon. It really is draining, as it just keeps going on and on and on. I am thinking of getting the WII fit, as the girls already have the WII, may start with yoga etc, have got so unfit. Been for long walk this morning, with woolly hat to cover ear! Honestly feel like an old woman. Enjoy your weekend in Devon, will clear the head. Sue. glad to hear your doing better, let us know what you have done to get that! I too sleep hot now with this, not sure if age, but im sure it is to do with labs. 5 years is a long time for you to have been suffering, hope you get lots of support. Binx, hope you make good progress, really have to be patient with this. The anxiety was really bad for me around the 3 month mark. Somebody taught me to breath in for 4 seconds and then out for 3 seconds, when i felt an attack coming on. Did and still does seem to help as you focus on your breathing and not the anxiety. i really think we would all try anything that would help or cure us. Jemma, sorry to hear you slipped back down again. I am really going to aim for the two year mark to be rid of this, thought maybe the one year mark it would go, (we hope), cant imagine years of this. To everyone else, lots of love Wendy x |
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Donna lol i was just wondering if it could help but i will take your word for it :) So today is a bit of a downer i woke up with my body feeling wierd, and feeling like there is a earthquake inside of me. but the dizziness has seemed to go but still my body feel CRazY. plus like all of you i feel a bit insaine but that is nothing unusual with this stuff HA lol So i think i fegurd out why we have some good and bad days. i was feeling really good all week untill i woke up and there was snow EVERYWHERE :O not only snow but there was a high pressure system moving in. this has happend to me a couple of times when i feel really wierd due to the extream weather with high pressure systems. so everyone that is interested in this theory should watch the weather wait for a high pressure system and see what happens, and write back!! there is a tylenol pressure relife pill that i have been taking when this happens it seems to help ALOT!!!! THANKS FOR ALL THE SUPPORT!!!! :D |
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i posted the anonymous above Alright so i am going to list all my current symptoms stiff upper neck, always tired, head not so dizzy anymore but it feels spacy, sometimes i get a upset stomach, blurred vision, hot flashes every now and then, ringing in ears,ear pain, fluttering ear drum, earthquake feelings, vivid dreams, and its sometime hard to read out of a book :/ but all this stuff comes and goes in differnt waves. i'm going to go get lyme teasted really soon.... but i do have periods where i feel really good but today was just. |
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Hi all, Well off to Devon for a few days. Weather brighter - cold and crisp but dry and bright - so good for walking. Like you Wendy - will have to have the old woolly hat to cover up my ear! Great to hear from you Wendy. We do just have to plod on with this thing don't we. I suppose, even though I don't feel good, I am getting around and doing stuff which I didn't the first few months of this. Progress???!!!!!! I do love the Wii - thing is I get carried away and end up the next day with more aches and pains than before because I've overdone it!! On the news the other night was a piece about how doctors and physios have been really busy through people getting a Wii for Christmas and putting their backs out etc! Wii Fit is brill! I was out doing my daily walk and just sighing with how I so want to be normal and not feel odd or have stiff muscles etc. etc. With you on settling for the 2 year mark (I'm this June) - so it had better get moving LOL! Hi Sean (I think it is you that signed in Anon?) Yep - change of weather does effect nearly everyone on here - the feeling insane maybe a full moon??!!!! I've also wondered about all the other stuff that I experience - odd twitches, pains in muscles I never knew I had, jittery feelings etc. How or why, I have no clue, but never had anything like this pre-labs. We don't have Tylenol over here - sounds good - what else is in it? Anyway, am sure you'll be back up there again soon. Take care. Love and hugs to everyone, Will report back in a few days. Gloria xx |
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HI folks...just giving an update. Month 9 of lyme treatment. Overall, still progressing well..in the 90%'s. Binx and newcomers..I suggest you read my posts above and on previous page regaridng getting an IGENEX test for lyme disease. It is all over the USA and EU. I was originally diagnosed with Labs back in April by my ENT after testing negative on a "standard" lyme test. But, I wasn't making progress with my labs healing, so I kept looking for answers. I found my lyme literate MD (LLMD) who gave me the IGENEX (www.igenex.com) and I came back CDC positive for lyme. once I started treatment, I made rapid recovery. I know a few others on here also have since found out lyme was at the root of their labs. So..if you are new..check it out. Tests are terrible. If you test negative, this doens't mean anything. you can still have it. If you have labs symptoms with sweating, neck pain, eye floaters, ear fullness, muscle aches/twitching, think lyme. check out clips of the 2009 documentary "Under our Skin" on youtube and join the discussions at flash.lymenet.org Cheers, Brad |
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Hi everyone I will need to learn everyones names Wendy , Gloria , Jemma , Binx , sue I know theres more will try and keep up x Great for the person who has gotten better after 4months really happy for you :D Sue great your feeling better Im back on amitriptyline it was helping me more than I thought it was as I wasnt get too many relapses whilst on it so here goes nothing ! And its fab for sleep isnt it? Ive had a good two days and whe you felt rock bottom with this thing its such a relief to feel more human again isnt it not normal but minimal symptoms again which I can cope with its four weeks tommorrow since that terrible 10 days so Im really hoping it isnt hormonal or it may happen again ! Gloria Sorry your still suffering its a horrid illness with many ups and downs the downs are hard though but your doing the right thing I hope you wake up one day in June and its gone! :D Jemma sorry your feeling bad again I honestly felt like death the other week and feeling better again now try to remember a better day when you feel rubbish it helps but I find it hard to think it will get better again although I know it will! and yours will too! Sorry if I miss people out hard to keep up but will try my best :) x |
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Hello all, Think I was speaking too soon, the wonky head headache and extreme tiredness is back. I'm just going to take it easy over the weekend, thanks for the encouraging posts. Hope Devon is relaxing for you Gloria. Wendy I hope you get rid of all the very familiar symptoms. I just wish my ENT specialist would read the comments on this site, It might help him to understand that this is a very real complaint. Love to you all have a good weekend everyone. Love Sue xxx |
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Hi everyone, Havent posted for over a week & it seems there are still alot of new & old sufferers out there :( . Hope you all see some improvements very soon (seem to have been saying that for sometime now) My own relapse is subsiding getting some better days again, thank goodness. How will we know when this finally goes will we need at least a couple of months of no symptoms whatsoever?? I thought the other day if I only feel 25% better than this time last year then will it take 4 x the amount of time to be 100% better (4 years from start??) Hope not! That was on a very negative day. Now I am feeling about 75% better than at the beginning, but goodness knows if that will change next week. Hey Ho onwards & upwards. To all the regulars & newbies Have a good weekend :) Claire xx |
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Hello eveyone, As i'm new its always good to read your comments. Went to the docs yesterday and asked for more bloods to be drawn to check for everything and anything - including lyme. I think i am still clutching at straws not fully believing its labs - possibly because of the wide ranging and sometimes mad symptoms. Doc says waste of time pulling more bloods - is convinced 1000% it's labs - and to go home and continue riding it out ! I will now be starting my 8th week of this next week. I had been making good progress, with even a little driving towards the end of the week - some improvement most days. I then went to the chiropractor last night for some neck work following the pain caused by trying to keep my bowling ball (head) in line. Chiro did some great stuff - and neck feels fine - but my balance has been scuttled again. My head is straight and everything else is now out of sync. Damn. Also woke up feeling reallllllly rough. Wife drove me to watch kids play footy this morning. Watching the 22 players run around didn't do much for me either - neither did the flickering flourecent light in the toilets. Felt fried afterwards - needed to get home asap and lie down for a while, gather myself and dry off my very very sweaty anxious hands. Panic attack avoided - just. I am hoping that this is just a little slip and i can start to push forward again. I had been going so well. From reading all the posts on here i ought to have been aware of the slippery snake waiting to pull me back down. Wonder if my chiro was the snake on this occassion - by levelling me up the rest has gone askew. Anyway - ENT appointment next Friday - lets see what they have to say. Feeling this bad is no good - my sweaty hands and feet tell me so. Take care everyone - will check in again soon !! Binx 1965 |
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Gloria - it one that you have to sign for over the pharmacy pseudophedrine is its active ingredient... its actully called advil sinus not tylenol MY BAD... but it works wonders when pressure systems come in :) you must live in England, right? |
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hey i was also wondering how am i supposed to get a job with this stuff.... i hate having to depend on my parents but yet i cant get a job, because i know i will get fired sooner or later from having to miss work due to day when i feel really bad. should i start out with a part time job? |
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Hi all, Jemma - you asked am I over my Labs, no just quiet and tired. Doctors have taken me off all medication. All seems 20 times worse. But the sun still comes up and the sky is blue and I live were you don't need a row boat at the moment. Somebody mentioned air pressure and the effect it has on us. Believe me it is true! In Victoria at the moment it is very humid and Labs is terrible. Some of you say you can't work with this. Maybe I'm pushing myself to much, I am still working a 38hr week. That's what the doctors here say "Keep working and do as much as you possible can". I'm still a little worried about flying to Vanuatu next week, hope the plane doesn't make things any worse. Does anybody else out there have a house full of 18-22 year old. Their music just kills my head. Enough for today I have happy (NOT) caravan customers to go and try and sell to. Love to all Aussie Donna |
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http://www.youtube.com/watch?v=V6cMkhhqn6k This reggae song helps me relax when i'm having a bad day :) |
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Does anybody get called lazy with this? people tell me I should be working( I have two young children aswell) and I would love to work again but its to to much! Im tired of people saying I should be doing this or that wish they could have this just for one day ! |
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Hello all, Been going in reverse for the last couple of days. Will wait and see what the ENT has to say on Friday. Thought i was on my way out of it - but have been pulled back in. Someone on these pages said 'don't push labs - it bites back'. I consider myself to have been well and truly mauled. From 95% back to 40% and feeling drained of all energy and wobbly. Thanks labs - i owe you one !! Anybody looking for some extra reading - have a look at this forum; http://ehealthforum.com/health/topic36950.html My guess is that most of the 'long timers' will have been there already. But for any newbies (like myself) it made further interesting reading. Week 8 and i am ready for this to go away - soon !!! Take care of yourselves - one and all. Regards, Binx1965 (Nottingham - UK) |
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hi all Donna who says you're lazy! Is it people close to you or people who don't know what this condition is? The only people who have made me feel like I should be working through this are the doctors, everyone else has been pretty understanding and sympathetic. I am lucky that the two closest people to me, my boyfriend and my mum are spportive and would not say something like that to me. I dont really know what other people think privately but I would be very upset and angry if anyone called me lazy! As for you, it is hard enough with two young children let alone having this. Loads of women with children stop working anyway let alone being ill as well. I dont have any children and I stopped working. It is not for anyone else to judge you. Unless it's someone really close to you who says these things I would just totally ignore them. How is everyone else? Gloria, how was your trip? For me it is same old same old but overall I cant complain as this week hasnt been too bad. Love Jemma xxx
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Hi everyone, Donna 24, anyone who calls you lazy, tell them to spin round in an office chair 20 times, drink couple of bottles of vodka, put a whistling kettle on (noise effect of tinitus) and see if they can function after that, because that is what us labbies have to cope with majority of time. I said this to a so called friend who found it difficult to believe what i was and am going through. This illness really shows who are true friends and who perhaps are not, thank goodness two have stuck by me 100% the others can honestly say have not been there for me only at the beginning but then drifted of. With two small children you are coping really well, its tough so dont you worry you are doing fine. Jemma glad your week hasnt been too bad, just have to keep plodding on. Gloria, hope trip to Devon was nice, probably shattered when you got back with all that lovely fresh air. Binx, sorry to hear you have gone backwards, really tests your patience. Somedays i feel abount 80% better others it goes back to about 60% after a year so it can be slow progress. Good luck with ENT on Friday. Claire, Ashley, Sue, hope things well with you all. Love Wendy x |
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Hello all, Went out for a 5 min walk tonight just to keep the legs working. Strangest feeling - its a very cold night (must be close to 0 degs c) and i could feel the chill directly on both ear drums - like they were hyper sensitive to the chilly temp. Must remember to put my floppy hat (with the ear flaps) on next time. Don't know if this is linked to the condition - or i have now become mega concious where my ears are concerned. 2 steps forward - 1 step backwards, 2 steps forward - 2 steps backwards, 3 steps forward - 1 step backwards, 3 steps forward .............. Everybody crosses the finish line in the end. Take care, Binx 1965 |
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Hello Donna, the 'lazy' comment really got to me. Anybody who thinks that this is easy or just some psychosomatic illness - needs to think again. Aa an example - I have taken no time off work in many years - in fact the only time i had off was for a gall stone problem 7 years back. Other than that i am virtually totally unblemished in nearly 30 years of working service. Some people would consider me to be a big hard bear of a man - confident - high level manager - 6ft 3in tall - 16st 7lb in weight - very physically fit and a part time football coach outside of my normal day job. When labs struck - it turned me into a piece of paper blowing in the wind. constant balance problems - could hardly walk - couldn't drive - couldn't work - chronic neck pain - constant fatigue - no appetite / lost weight / constant head pressure / headaches - absolutely riddled with anxiety / panic attacks / phobias. Depression - plus a host of other mentally crushing symptoms - made worse with perscriptiom meds - i could go on and on. I have even shed a night-time tear or 2 along the way - no that's not true - ive wept. Some of this is still ONGOING. ABSOLUTE QUIVERING MESS OF A MAN !! IN JUST A FEW SHORT WEEKS. ALMOST UN-RECOGNISEABLE (physically or mentally) TO MY OWN WIFE. But slowwwwwwwwwwwly it is getting better ! It couldn't get any worse. For some this improvement will take a while - little steps - that is clear from nearly every post on these pages. Anyone thinking someone with labs is lazy - tell em to read these pages / this post or give me a call. Stay positive - this won't beat YOU - as it won't beat ME !! BE STRONG Sorry to everyone else reading this - but those 'lazy' comments really fired me up. Take care, Binx1965 |
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Dear all, I'm having an up and down sort of week, one minute I think I'm on the upward slope, then I feel those old familiar symptoms - swirly head, weariness, ear pain, hissing etc etc; still I've got to stay positive, because there have been some good parts to my days this week - too early to celebrate just yet! Donna, I really feel for you, I think we all think other people don't understand how awful we feel, maybe we don't give into it enough I sometimes think I haven't been enough trouble to the NHS and perhaps I haven't asked enough questions,I hope you feel better soon, it must be tough going with young children. You must not let people allow you to feel so bad, this illness is bad enough without having unhelpful comments from unfeeling people. I am going back to see my ENT specialist next week and have written a letter to him in preparation for my visit as I often come away feeling I havn't got the answers to my questions - so here's hoping, maybe he'll post it in the next edition of the Lancet!(or maybe as my husband suggested - Ears Monthly!) Binx I hope you got some good news and advice from ENT, keep us posted. Hope all the rest of the crew are doing well, best wishes to you all Sue xx |
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Sorry didn't want to upset anyone with the lazy thing . My sister and brother who I do love camearound the other day and i was having an extra dizzy day and they wanted a drink and I was sitting down as I kept getting spells so I said your going to have to make it yourself and they were like 'Oh Donna your so lazy' and it really peed me off and my dad said it too once he was like 'Donna wont work again , shes too lazy and fragile to work' I just wanted to scream I try my best I wish they could try looking after two children aged two and four with this 'thing' ! Its hard work for a normal healthy person raising children but when you have this its so much harder and I do feel useless and guilty without people pointing out Im lazy or 'dont want to work' I worked since I left school until I had my second child so I have worked before. I know other people probably think Im lazy and my own doctor told me it was all in my head infront of my mom so wonder how much they believe sometimes . No one would make this crap up my imagination isn't that vivid for a start. Just thankful to have a supportive hubby I know he gets annoyed with this illness but hes there for me . Sorry about the rant LOL XX |
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yeah my birthday is on the 1st and my parents are telling me i need to do something and i feel really bad but i dont know what i can do. beside sit and talk to people... FUN-not i dont really exercise any more since i have came down with lab. i dont drive anymore because i'm worried i might die, or kill someone if i have a really bad moment on the road. it is getting better though but still its very slow progress even though i do have symptom free days now which is nice. i'm just glad i graduated last year or els i'm sure i would have dropped out with this stuff. but i am happy to be alive and thats all that counts :) |
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Hello all, Donna anyone who thinks you are lazy obviously has no empathy for other people, maybe they could help by looking after your little ones for an afternoon!!!! I have 2 girls 12 & 11 so not as hard as if they were small, not sure how I would have coped with this thing then!!! Just ignore the negative comments, at least you have a supportive hubby (luckily I do too) Like you say he gets annoyed with the illness & not you which is very important. xx Binx, seems like you are suffering, I know what you mean about the 1 step forward 2 back etc I have had this now for 1 year this weekend!!! & although I know I have improved since back then I do still have relapses which are sometimes as bad but mostly on an even keel & suffer more in the evenings so can at least put on my normal face for everyday life. This thing also changed me completely as a person all those things you described we can al relate too, basically its all a bit crap (sorry). Wendy loved your comment about the spinning chair & vodka in fact I remember (in my younger days) playing that game where you drink vodka then spin round with your head on a pole & run back although obviosly you cant run in a straight line & usually end up in a bush!! seemed like fun at the time, never knew i would actually feel like that without the vodka. Jemma, Sue, Gloria & everyone else hope you are having less dizzy days!! I am stiil much the same although the nasty relapse from a few weeks ago has subsided slightly just same old same old now & back to using 3 pillows at night!! have that dreaded week coming up so hoping it will be better than last month. On the plus side must be feeling better than last year as i have been going a bit mad & booking all sorts of hols/wkend breaks/camping trips to get me through the year & give me a positive focus. Taking 4 girlies to the cinema today to see 'Tangled' didnt book 3d viewing though, not ready for that yet :) Love to all Claire xx |
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So been away for a while, unfortunately im still in a state of permanent 24/7 rocking disequiibrium 14 months later,, starting a new job next week hopefully it will go well. Anyways i think ive had enough of living with this thing naturally and am seriously considering a SSRI such as Klonapin or zoloft as ive read some research by Dr. Hain that can be tremendously helpful to people with rocking vertigo. |
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Hello everyone, Real glad to see some of you pushing forward. Saw the ENT on Friday. Asked me the usual questions - did some basic tests on hearing / ear pressure / hearing test / dix hailpike manouver / tuning fork thing on my knees and elswhere / walking balance / etc etc etc. Also a physical examination. Typical first appointment i'm guessing. During the physical examination - he said i looked post viral - think from looking in my throat and feeling my neck glands etc. All the other tests appeared to be in the acceptable range. So possibility of post viral infection affecting the inner ear mechanisms - not ruled out. Said - he would do an MRI just to confirm that there's nothing that's been missed (again i think fairly typical for a cautious ENT consultant). Wanted to look at my neck as well as the inner ear workings etc. I had a whiplash injury in 2005 - that had an effect on my neck at the time - but cleared up after a couple of weeks. He doesn't know whether it's the ear prob or some 'kick back' from the whiplash that's causing my neck probs but said he would rule it out (or in)with the scan. Thanks doc - i like someone who is hands and gets things done (hands on) - unlike my GP(s) who have never physically examined me once - 'ride it out' indeed - viral infection indeed. I can't knock em - they may be right ! that's confidence for you !! If they are right i will salute their professionalism (hopefully) when all this is over - or at least over enough for me to operate as a productive human being again. Just for interest (particularly to those with labs related neck probs) this is what he is looking at with the neck - common and can become a chronic degeneration following heavy whiplash injuries. It's the symptoms you may wish to cast your eye over; Cervico-encephalic syndrome: Sharp headaches, tinnitus, buzzing in the ears, oversensitisation (e.g. to loud noises / light / flicker), vertigo, blurred vision, balance problems, difficulty concentrating and thinking, nausea and vomiting. When i saw the ENT i was having a reasonable day - as i am today. Hopefully - this is because i am 'picking up' following a few bad days previously. I pushed my doc for the ENT appointment because i wanted to be certain and didn't want to delay any diagnosis or med treatment that could make me better sooner. My GP is still confident that this is labs linked to a viral infection and should just 'ride it out' for 8 -12 weeks (which they seem to think is the norm). I don't like the 'ride it out' bit at all. Most of you will be aware - i am only currently on week 8 ish - but as you will see i am pushing the docs and NHS where possible. On a final note. Whilst cleaning my teeth this morning - i had a little cough. The coughing started a whistling / squeeking sound in my head somewhere - like pressure was being released. Eustascian tuble opening / clearing maybe. Never heard it before - lasted about 5 secs then stopped. Haven't felt bad at all today. The anxiety will need some work - i have gone from no anxiety prior to this - to max anxiety during. I had to pop a valium (diazapam) prior to my hospital trip. The reason for the valium was to get me through my time in the busy / noisy waiting room. I am now on no other meds at all. Will update again soon. Take care of yourselves - and each other !! Binx1965 (Nottingham UK)
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S, Gloria, Jemma, Sandie, Shirley, Claire and anyone else I may have missed, How are you all?! I can see from some of your above posts that you are having some good and bad days. S I take Zoloft. Started on it 1 1/2 years ago when labs struck. I believe it helped with my recovery. The nerve that gets damaged (vestibular) is the one that takes in serotonin. Zoloft makes your brain produce more serotonin. Therefore more would help heal the nerve that was affected by labs. I have been great! The only time I feel a bit off is when it is going to rain or snow. I get a bit lightheaded. I miss you all hope you are having a Happy New Year!! |
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Hi folks: Binx...your story sounds identical to mine. Your symptoms are identical, the test results are identical, etc. I, too, went to an ENT and had all of the "usual" tests. I, too, was told I looked viral, that it was likely "labs" and it will take time. I, too, was given a standard lyme test from my ENT and was NEGATIVE. This means nothing. Little did I know that those tests miss 65% of the lyme cases. They are very insensitive. As yourself...do you have any of the following symptoms?: -Tinnitus? -Ear Fullness? -Neck Pain? -Anxiety? -Back Pain? -Sweating? -Flushing / Chills? -muscle twitching? -GI issues? -dizziness, off balance, drunk feeling? -Visual floaters? -visual disturbances? -Fatigue? And about 60 other potential symptoms. There are only 3 tests that are remotely sensitive to detect lyme. The first is a WESTERN BLOT test from a lab called IGENEX in California. (www.igenex.com) Regular lyme western blots from commercial labs are not sensitive enought. There are LLMD's (Lyme Literate MD's) in the UK who use Igenex, or maybe you can find a doctor who can order a test. I've done that for my wife. I was negative on standard tests for lyme, but highly positive on IGENEX. It is the only accurate blood test, and even it can miss 25% of the cases. The second test is a CD-57 test from LabCorp. This measures the level of Natural Killer Cells in your blood. Lyme patients typically have a low CD-57. Normal is 200 or greater. If it's low, lyme is the cause. My CD-57 was 84. The third test is a Brain SPECT scan. This is an older test where the inject you with radioactive dye and look at how your brain is functioning. MRI's give us information on brain structure, but not function. Spects measure function and are usually abnormal with lyme sufferers. Usually there is inflammation and poor blood flow in certain areas. My first SPECT was highly abnormal. After 9 months of antibiotics it is much improved. So...if you have labs and get a SPECT scan and it is abnormal, think lyme. Lyme is in the UK and EU. Most doctors don't know it, don't know how to diagnose it, and rely too much on tests which can't detect it. The CDC in the USA reports 30,000 cases per year in the US, but estimate more than 10x are un-repported. That is 300,000 cases / year. more than HIV. I'm sorry, but I believe most people on here probably have it. You are all describing it's symptoms to a T. If you've gone uncompensated for months / years, that is just not normal for labs. Don't you want to at least entertain something else may be causing your condition? If it is lyme...you MUST get treatment otherwise the longer you wait the more difficult you will be. If you see the 2009 Oscar-nominated film "Under Our Skin" (clips on youtube) you will understand why most doctors can't diagnose it. So...I know some on here are getting tired of my preaching. But I'm trying to help..and if I can just help one person on here it is worth it. Actually..I already have helped one person. Chuck (who posted above in Nov / Dec) lives in Texas where lyme supposedly doesn't exist. He was told he had labs. He tested negative. But then he went and got an IGENEX test and was positive. He has started lyme treatment and has started to have flares, which means there is die off. He has lyme..he is getting treatment. He will get better. Others on "the Dizzy lounge" are now finding out the same. They've been told for years it is labs, VN, or MAV. It is really lyme for many (not all.) Please please consider lyme. Everyone on here is describing symptoms. I don't doubt you have labs. But what is the root of that labs? Lyme and related tick co-infections (Bartonella and Babesia) can cause labs. And remember...a negative standard test means nothing. If you want further proof, get the IGENEX western blot. You can order the test kit on their website. It's free. Get a CD-57 test from Lab Corp. Get a Brain SPECT from a Neurologist. Check out flash discussions at flash.lymenet.org Go to medical questions and post your story. Get feedback on your symptoms. You'll be surprised what you'll learn. |
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Hello everyone, Please read this in conjunction with my previous post on 30th Jan. You will know that whilst at my recent ENT appointment to explore potential labs and ear probs - the consultant bacame very interested in the fact that i had been in a road traffic accident - rear end shunt approx 5 years ago. He put some emphasis on this after i complained of the neck stiffness / ache probs - suspected as arising from my lack of (labs related) balance. It was he who actually asked if i had been in a past RTA - with no prompting from myself. You will know from my previous post - that an MRI has been commissioned to look at my head and neck. After getting home i did the usual internet thing to try and find out what he might be looking for with the neck (cervical spine) - and whether or not some of my (suspected labs) symptoms aligned. This consultant was a pretty sharp cookie - not the sort that just wanted you out of the door on a friday afternoon!! Hey presto - there's all sorts on line: Please check the following link - particularly if you have ongoing neck probs - or been diagnosed with labs but have had continually clear test results; http://www.erinelster.com/CaseStudies.aspx?ConditionID=9 You may need to paste the link into your browser. This link is to a cervical chiro site - with some case studies. I have chosen this because it makes for easier reading. Once you have had a look - if you feel it is / or may be relevant - you can then research / search the technical stuff online. It's some of the symptoms of the cervical spine problems which got me - so close to labs (in some cases) it's unreal. Please read down the case studies as labs is referenced on a number of occassions. The long timers may have already looked at this - but i hope it helps someone - with a side condition that docs may be pinning on long term labs / viruses etc. I now await my scan and results to see what's thrown up. I have also arranged to speak to my chiro on friday regarding cervical spine issues etc - but won't be letting him touch me (significantly) until i know the results from the MRI. Take care everyone - keep pushing forward in the search for answers and better health !!!! Binx1965
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Hi all, Back after my few days away on hols. Had a lovely break although weather not brilliant, but just nice to be in different surroundings. Came straight back to major entertaining again - am a glutton for punishment. It was a relative's birthday and we invited over some other people we haven't seen for a while - so it was a whole week-end of Hotel Gloria again!!!!! Why I do it - just want to carry on as I used to I suppose. That said - like Claire - am still suffering from my post Christmas relapse, although not as bad. As Claire said, I have still carried on throughout it all. Sunday when I was in the kitchen doing lunch and turning around from oven to sink to work-surface was giving me major swirlies - just like months ago. But, carried on. Put up and shut up. Good to hear from everyone and sorry Binx you are having a bad time, but it will get better. Whilst symptoms lurk for a while, you do notice that you are doing more and it just become a bl**dy nuisance. I had all the neck scans done to see if it was my neck, but apart from a little degeneration of the discs - very minor - it is all related to the mis-match of signals between the brain, eyes and balance mechanisms, making the muscles in the body act out of sync. Some people experience this more than others (probably my age has something to do with it as well - lady of middle years!!!). Have got ANOTHER VRT physio tomorrow. This time she is actually making a home visit to re-assess me?!! Whether she will give me the same old exercises waits to be seen, but at least at home I am on my own turf and will maximise her visit. Waiting for an appointment with a neurologist to talk about my migraines (I'll approach him about the lyme thing Brad - even though I have had a test, but considering you say most negative results can be wrong, see what he says). Jemma - glad you are having a stable time - a long phase I hope. Sean - HAPPY BIRTHDAY! Try and enjoy your day. Hope you are having a better time to do so. Donna - my heart goes out to you. It is awful when people who are close to us don't understand how we feel. Everyone at my home this week-end thought I looked great and because I was cooking lunch for us all, they had no clue that my head was dizzy and near to bursting. I was a fool to myself. With this nightmare condition, I think you have to accept that you have to be quiet and calm and not put your body under too much stress to recover. That is sense, not laziness. From now on, certainly over the next few weeks, I must practice more relaxation to help me get over my post-Christmas stress, which caused my relapse. At least the person closest to you understands - like me - my hubby has been great. Claire - I think your idea of booking some things to look forward to is an excellent idea. Your hols in May will be soon approaching. I'm still a bit scared of the flying thing. Suppose the only way to find out is to actually do it!! Keep well and strong everyone, Love and hugs, Gloria xx |
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Gloria...good for you. Why don't ask to get blood drawn to send to IGENEX? Go to their website and print out an order form. You can pay by credit card and follow the instructions to get your sample sent. Your doctor will need to sign the order. Keep in mind that your doctor doesn't know squat about lyme, so is no better at diagnosing it than your cat is. He knows what the guidelines say..that lyme is a big rash, sore knees, and bells palsy. WRONG!!! |
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Gloria..one more thing...if you don't want to take my word for it, I suggest the following: -Go to youtube and search for Under Our Skin. Watch the Trailer and then watch an excerpt called "Patients Ignored"..you will see patient after patient that tell how they were misdiagnosed by doctor after doctor with VN, Labs, Fibromyalgia, Chronic Fatigue, Chrones, etc. The reason being, it proves that regular doctors don't know squat about lyme. Many went years of being told it was something else (like labs) or that it was "all in their head" when it was really lyme. -Go to lymenet.org (flash discussions, medical questions) and tell your story to see what other's feel. If there is a chance, don't you at least want to rule it out? Imagine if you finally get a proper diagnosis and start to recover., BTW...sore neck is a very common symptom of lyme. When I get a flare (very rare now a days), my neck and lower back really start to hurt. The reason being, lyme causes inflammation which MRI's don't pick up. These are all symptoms I had when I was originally diagnosed. Here is a symptom list again. Check off how many you currently have or have had in the past year: 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 everyone, Just a quick question. Has anyone had their ear syringed to remove build up of wax since having labs. My right ear (which is my bad ear) has a build up of wax and have been using olive oil for 2 weeks. Dont know whether to leave it and put up with it feeling blocked or to have it syringed as I dont know if it will make the dizzies worse. Would be grateful for any feedback. Gloria, glad your weekend went ok, more entertaining when you got back, you must be feeling shattered. Did they give you and more VRT to try when they came round to you? Claire, how did your trip to the cinema go, did you manage to cope with the noise of the cinema, i havent been since having labs, really miss it. If you coped maybe i should try it. A year or so ago before this, never would i think i would be asking someone if they managed to cope with the cinema! What this has done to us i dont know. Have just read Dizzy Spell by Gillian Barnett dont know if this helped or not. Think i feel worse after reading it as it makes you feel very self absorbed in your illness. Good you have lots of outings planned, something to work to. Binx, hope recovery is quick for you, sounds like you have had fairly good advice. Felt sad when i read one of your posts how much it had changed you. For a working man it must be tough. At least i could give up work as couldnt cope with that. To everyone else, hope labs is treating you all well. Love Wendy XX |
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Good to read all of your posts. Looks like it's getting a little lively on here. Some interesting stuff bouncing around. Brad - Lyme is very much on my radar. It's still early days for me - only being 8 to 9ish weeks in and all. Gonna let em slew through the basic tests - which should be completed in the next 4 weeks - including the MRI etc. By this time - i will be up at week 12/13 of labs - that is if i have not made a recovery (please god) by then. I have to say the last few days have seen an up-turn. By week 12/13 - should i not feel 90% or above consistently - Lyme is my next "full on" target. I will do whatever needs to be done to get the tests sorted - including calls to the HPA (Health Protection Agency) who are at the front end of lyme in the uk. They should be able to steer me towards the best route for testing and those local medics / experts in the know. The HPA have offices in my county. I concur that my symptoms seem to align - as do many of the other contributors (past and present) on here. As such lyme should be an option worth exploring - certainly as soon as you pass the 3 month mark with suspected ongoing labs symptoms (or similar). There is nothing to loose and everything to gain. Many thanks though - for the nudge .... Wendy - yes I had both ears syringed at 4 weeks in to the labs - both blocked with a sticky wax (not dry / hard). Felt almost completely deaf - but syringing sorted it in a few mins. It was quite a pleasant experience - not what i expected. They have some sort of machine now that very gently pulsates luke warm water. Both ears were done at same time - and felt no ill effects (dizzy / swirly) during or after. Was very happy to have my hearing restored to the best it could be. Had been trying with the drops for a couple of weeks - it was a waste of time - and made me feel even more concious and uncomfortable that my ears / hearing etc was a problem. As mentioned ealier i have started to see an upturn in the last couple of days - although still feeling quite fatigued in the mornings. Still some tinnitus - but lessens as the day goes on - or maybe my mind just bacomes distracted from it and it's not so apparent. Either way it seems to get less. Done some driving again this week - although just locally and not at busy times. I seem good for about 15 - 20 mins before i start to feel my neck ache - from the bobbling around. Have not driven above 30 mph or in any sort of traffic - this is more a confidence thing now - the more my neck hurts the more anxious i get when driving. When i am driving though - my wife says that the quality of control is good and i seem completely unaffected - which is good to know. In the first 6 weeks of labs i thought i would never drive again - it was bad enough just being a passenger - trying to keep my head down and avoid looking out of the vindow. Weather forcast of current symptoms / condition - NOT GOOD FIRST THING - GETTING BETTER THROUGHOUT THE DAY - SOME INTERMITTANT DAILY ANXIETY ISSUES - NOTICEABLE EAR PROBS AND FULLNESS REDUCING - SOME VERTIGO TYPE SYMPTOMS STILL FLOATING AROUND - OVERALL A GENERAL INPROVEMENT: SELF RATING MORNINGS = 55% EVENINGS = 70 - 75%. Meds wise - still popping the odd valium when necessary. Not taking much though - a quarter of a 2mg tab seems to suffice - this is an extreamly low dose. Ibroprufen (just started trying this) seems to help with the neck - just one in the morning. Both these meds do agree with me - no nasty side effects. Just 2 weeks into the labs doc tried me on prozac - not for the anti=depressant effects - but i think for the increased serotonin benefits. This drug nearly finshed me off - i had a really bad reaction to it. The side effects were horrendous - tremors / sweating / mentally non functional / hightened anxiety (1000 times worse) / no appetite / intense nightmares / nausea / shooting head pains / intense wosening of my balance problems / bouncy castle vertigo / speech problems / panic type disorder. I only took it for 2 weeks - but still also had some degree of withdrawal to look forward to - a sort of fond farewell. Wouldn't recommend Prozac to anyone - not even my worst enemy. Although i do uunderstand it works for some - just not me - having found out the hard way. Will stick to the low dose valium (as and when) from now on - at least the dreams are better and it clears the foggy head. Just 9 weeks ago - before all this started - i couldn't have imagined myself writting the above paragraph - the most i ever consumed drugs wise was the odd asprin and paracetomol for a mild headaches - now i sound like a full blown addict. Thanks labs or whatever ? Best wishes to you all - will check in again soon. Binx1965. |
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still kinda dizzy when i wake up, more of a tired feeling now but it gets better through the day.... all in all i'm still improving with more, and more days of no symptoms. today, including lastnight me, and my friends built an igloo LOT HARDER THAN WE THOUGH about half way done. now all we need is the roof which my be obsolete lol. midwest was hammerd with snow, tonight was the coldest night in ten years and we still managed to go snowboarding being pulled behind a car VERY FUN but with side affects of face plants xD i'll keep up on the 411 |
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Hi everyone Gloria glad you had a nice break, you deserve it. I can't believe how much entertaining you do but you are certainly very brave for trying! I can just about cope with one or two family members at a time and that's on a good day. However there has been improvement so I am grateful for that and I don't think about how I feel every second of every day like I used to, although still a lot more than I should. Binx your posts are interesting and entertaining. It is so good you have retained a sense of humour about this. I think at 13 weeks I was still a blubbering mess! For me I adapted quickly to driving again and being in a moving car actually masks the off balance feelings for me. However I do remember in the first few weeks I felt weird in a car and did not want to look out of the windows and kept looking down like you describe. Good news is this gets better and I bet you will be driving properly again soon. Like Wendy says I do feel really sorry for all you guys out there with this who are the breadwinner. I was so lucky that I was able to give up work thanks to my partner - I honestly don't know what I would have done after trying to keep going for a year with this even part time was too much. Wendy I have read that book you mentioned. I thought it was quite interesting but somehow not that helpful. It isn't very long is it and kind of feels unfinished because I dont know if the author actually made a full recovery after 2 years? With regard to the cinema I have been many times with this. For me, I haven't had too many problems with the dark so I have coped with it ok. At first I did feel more wobbly and sat really still but it has improved and I feel pretty much normal sitting at the movies now with the occasional blip. Binx the neck tightness is all part of this. It may be good that you have been experiencing it so early on because I think that is a sign you are compensating and the muscles are adapting and working harder to keep you balanced. For me the neck pain didn't even kick in until about month 9. Now I am at 21 and a half month and the neck pain has improved a bit but can flare up. Sometimes it feels like the aches are working their way down by body because I have this really strange aching feeling around my heart and chest/diaphragm which I can only attribute to the same thing. With regard to the anxiety part of this well that is just plain awful and scary. It is basically the brain releasing various chemicals and adrenaline to react to the weird dizzy signals it is getting. Your brain is confused, your body is flooded with adrenaline and this triggers a panic attack and for some (like me for the first few weeks) constant anxiety symptoms. Like you, I tried to keep going for the first week of getting this and in the end the anxiety got so bad I could not do anything. I was shaking all over and movement just made it worse. I thought I was going mad but now I have read so much about this I have rarely heard of anyone with this who hasnt had anxiety and majority of those have never had it before in their lives. I found it gradually subsides, for me over the first few months. It can flare up a bit sometimes but never like it was before. Usually just my heart feels a bit quicker and more pounding than it should but it passes away and I try to ignore it. Claire, Donna, S and everyone else hope you are doing ok. Love Jemma xx |
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Hi everyone Gloria glad you had a nice break, you deserve it. I can't believe how much entertaining you do but you are certainly very brave for trying! I can just about cope with one or two family members at a time and that's on a good day. However there has been improvement so I am grateful for that and I don't think about how I feel every second of every day like I used to, although still a lot more than I should. Binx your posts are interesting and entertaining. It is so good you have retained a sense of humour about this. I think at 13 weeks I was still a blubbering mess! For me I adapted quickly to driving again and being in a moving car actually masks the off balance feelings for me. However I do remember in the first few weeks I felt weird in a car and did not want to look out of the windows and kept looking down like you describe. Good news is this gets better and I bet you will be driving properly again soon. Like Wendy says I do feel really sorry for all you guys out there with this who are the breadwinner. I was so lucky that I was able to give up work thanks to my partner - I honestly don't know what I would have done after trying to keep going for a year with this even part time was too much. Wendy I have read that book you mentioned. I thought it was quite interesting but somehow not that helpful. It isn't very long is it and kind of feels unfinished because I dont know if the author actually made a full recovery after 2 years? With regard to the cinema I have been many times with this. For me, I haven't had too many problems with the dark so I have coped with it ok. At first I did feel more wobbly and sat really still but it has improved and I feel pretty much normal sitting at the movies now with the occasional blip. Binx the neck tightness is all part of this. It may be good that you have been experiencing it so early on because I think that is a sign you are compensating and the muscles are adapting and working harder to keep you balanced. For me the neck pain didn't even kick in until about month 9. Now I am at 21 and a half month and the neck pain has improved a bit but can flare up. Sometimes it feels like the aches are working their way down by body because I have this really strange aching feeling around my heart and chest/diaphragm which I can only attribute to the same thing. With regard to the anxiety part of this well that is just plain awful and scary. It is basically the brain releasing various chemicals and adrenaline to react to the weird dizzy signals it is getting. Your brain is confused, your body is flooded with adrenaline and this triggers a panic attack and for some (like me for the first few weeks) constant anxiety symptoms. Like you, I tried to keep going for the first week of getting this and in the end the anxiety got so bad I could not do anything. I was shaking all over and movement just made it worse. I thought I was going mad but now I have read so much about this I have rarely heard of anyone with this who hasnt had anxiety and majority of those have never had it before in their lives. I found it gradually subsides, for me over the first few months. It can flare up a bit sometimes but never like it was before. Usually just my heart feels a bit quicker and more pounding than it should but it passes away and I try to ignore it. Claire, Donna, S and everyone else hope you are doing ok. Love Jemma xx |
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Hello fellow 'Labbers' Well what a pants week!!!! Full on vertigo on Sunday morning exactly 1 year on from the very first swirly attack (last Sunday in Jan 2010) AAArrgghh!!! Almost like the little blighter is just reminding me 'Its still here' Also today started with symptoms of a cold which was a wierd relief in a way as at least I think it explains the sudden vertigo. Wendy the cinema was fine I am always unsteady in the dark with this but then always have been really. i think you should set yourself a little target, just to get back at the labs. There must be a film you would particularly like to see at the moment. lots to choose from, go on try it whats the worse that can happen?? Let us know how it goes :) Gloria glad you had a nice little break shame about the visitors straight after though! I have some more coming for half term, but then I am going away to stay with my oldest girlfriend who lives near Brighton so really want to feel okay for that. Jemma how are you at the moment is it on an even keel? I am hoping once my cold has gone that maybe I will feel extra better (maybe wishful thinking) Binx your weather forecast is exactly the same as in my part of the world!!! Anyway heres hoping for a quick recovery & back to some kind of normal P.S lovely to hear from Melissa a success story at last!!! Claire x |
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Binx...I'm happy to nudge and glad to know you are seriously considering it. I had the stiff neck, wicked anxiety (never had it before), dizziness, etc, etc. All of that is now GONE with 9 months of lyme treatment (and counting.) It is physically a side effect produced by lyme and bartonella, and sometimes babesia. Oh yeah...and for what it's worth both Chuch and I were on upswings from labs (as you are know) when we tested positive. If you wait long enough, you will go down again. Lyme is famous for a waxing / waning / migration of symptoms..usually every 4 weeks when it replicates. One thing I just noticed which concerns me is from ISH. ISH...back in November, you mentioned how your MD in Aussie said if you really had lyme for 2 years 'its too late'. Absolutely untrue!!! While the longer you've had it, the harder it is to get rid of, I've met many who were misdiagnosed for 5-10 years who are now 100% well. (and others who still struggle.) But you can get well even with long term infection. |
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Hello everyone, Thanks for the messages. Yes it's still well and truly on the radar Brad - I will give the docs / consultant the benefit of the doubt until the end of the month - when all the basics are completed. Next visit with my consultant - i will be pushing it - particularly if they give me the inconclusive / ride it out / virus story. I will then be asking for the lyme tests etc. Has anyone else on here - been down the lyme route since being given a labs associated diagnosis ?? particularly any of the long timers ?? what was said when you mentioned it to your doc / consultant ?? Did you go through with it ?? Many thanks, Binx1965 |
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Hi all, Afraid this will be brief as am having to use a friend's laptop - our wretched computer has crashed AGAIN! Now, my hubby thinks he knows exactly whats wrong and needs doing - he said this last time!!!! Anyway, Jemma, you really sound like you are doing so well - at last! Although, like me, my muscles are tight in odd places too. About time you had a turn around for the better. Are you able to do more in your day now? Have you started to do more aerobics/exercise? Claire - my heart goes out to you. My blip - relapse more like - post Christmas is dragging it's heels too. Even though I am functioning day to day - you still know this little 'b' is around. Certainly your cold sounds like the instigator. I just want to know when we can get colds etc without this thing impacting! Patience is truly a virtue - never has mine been so tested. Hope you feel better very soon - big hugs oxox. Wendy - lovely to hear from you too. I have had my ears syringed - for many years my left ear which is my affected side - would always get blocked and had it done. Even last year - no probs. The warm water is quite comforting. Probably made me very slightly lightheaded than before but nothing major. The VRT physio came to the house on Tuesday. As I haven't seen her before, I had to go through the whole story AGAIN!! How many times that is now I've lost count. She is coming back next week as we ran out of time. However, she thinks my migraines are definitely hampering recovery for me. (I've got a neuro appt coming up). However, she said the exercises I do to continue for the moment and she will evaluate next time, but said the side to side, and up and down head thing was a must, as was standing with my eyes closed, then on one leg (alternate) for at least a minute. Then walking around in a large circle focusing on something in all corners - one minute one way then turn around and do the same. She says that many people get so bored (as I have) with doing them, they don't fully compensate as they stop. She said this can take a long time, but they must be done daily without fail for at least 5-10mins. Apparently if you don't then the brain doesn't fully compensate and to wait for it to happen naturally is a bit of a lottery - oh joy!! One person says one thing and someone else differently. So head shaking continues!! Perhaps I should become a heavy metal rocker and rock and shake my head back to normality LOL!!!! Binx - you sound such a philosophical person with all this. Good for you. At the beginning of all this for me, I went to see a private ENT and neurologist. Couldn't wait for the NHS - it was all too scary. Basically, the neuro first of all got me to have a whole bunch of blood tests as there are quite a few things that can cause these symptoms, not just Lyme. This test cost me £1,000!!!!!! The lyme came back negative. On the back of what Brad says, I went to see my doctor again the other day and talked to her about it. She is quite an experienced doctor. Anyway, again along with a raft of other blood tests, she has got me to have a lyme test which has been sent away. Now, I know Brad says most test results cannot be relied upon and I did broach this with her, but she says they are very comprehensive. At least this time it is on the NHS - have no more money in the kitty to pay privately again!! Love and hugs to all, Gloria xx (may not be able to post for a few days - see how hubby gets on!!) |
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ps - Binx - what I forgot to add is my Doctor thinks it is very unlikely to be Lyme and more my body being under stress causing all the other things I get like the sweats (not at all major now), upset stomach (again not major now at all), anxiety etc. These are all very associated with labs as the sympathetic nervous systems in the body are reacting to basically what is mis-programmed information to the brain between the eyes, balance and muscles and body co-ordination. At least it ticks another box though I suppose. Gloria x |
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Hello everyone, Just thought i would give you my history with this thing; Mid - End Nov 2010 - Had the flu for a week. End Nov / Early Dec 2010 - Had what appeared to be a chest infection with barking cough - this lasted nearly 3 weeks. Didn't bother with the docs - rode it out and eventually seemed to go away. Early - Mid Dec - Had a week feeling relatively OK Mid Dec - Started to feel fatigued in the morning when getting up for work. Mentioned to wife that i thought i'd picked up something up again. During this time the bugs were circulating like crazy at work in a large open plan office. Lots of people going off sick with this that and the other. At the same time my neck also started playing up - particularly when my head was bobbing around - driving. I was constantly trying to massage the knots out - but it just seemed to be getting worse. Like my head was twisting and there was a weight pulling it down at the back. There was also a feeling of being unsteady on my feet - we also had a lot of snow down at the time and i put some of the blame on this. Kept going to work - although i felt i was really struggling and felt quite fatigued. Both of my ears were becoming blocked with mushy wax and there was also some mild tinnitus in my left ear. (This all seemed to happen over the period of one week). Mid Dec - Went to work one day feeling dreadful. Had a meeting first thing in the morning for one hour which i just managed to scrape through. I had a mild headache, stiff neck, balance seemed off and my vision was not 100% - more around the focussing end. Went back into the large office area - florecent lighting - lots of noise - people moving around etc. After 10 mins staring at the PC a colleague came up to the side of my desk - as i turned the swirlies started and everything started shifting around. My body must then have automatically engaged a panic mode as i felt my BP rise and my chest start to tighten up. It's a heart attack i thought - yet i was in no particular pain. Hypervent also kicked in. My body had gone into panic mode all on it's own. It was scary. I just about managed to make it (stagger) to the first aid room - 50 yards away - and get on the couch - it took about an hour for me to make it through the worst of it. A colleague then drove me home. On arrival home my wife called the local GP. He came out within the hour. I was lying on the bed dazed. He did some basic checks - said i wasn't having a heart attack or stroke - and to call in and see him in a few days - after resting up. In the meantime had ECG / blood tests arranged - results - normal. Had a few more episodes of the swirlies - one woke me - my body agsin triggering it's fight or flight reaction. After a couple of days at home - mostly in bed i made it down to my GP's surgery. I went through the story above and also added that i now seemed to be racked with anxiety type feelings. Even though i had given him the full story he seemed to concentrate on the anxiety and panic type elements. Also told me to go get a massage on my neck if it was bothering me. I told the doc that i didn't do anxiety and panic - never had - never will - it's not in my character. He said it happens to the best off us. Prescription PROZAC. Said it would help me relax. Had another attack of swirlies and panic type symptoms. Hospital visit - another ECG - normal. Took the prozac for 2 weeks - it nearly put me in the grave. Scroll back a few posts where i have covered this in more detail. Absolutely - shocking experience. Stopped taking it - before it took me !! Early - Mid Jan 2011 Went back to the GP now with my wife in tow. She would sort this out !! I needed her in there to prove to him that i was neither a depressed, anxious or panic ridden individual - not prior to the prozac anyway. He told me to go home and rest. Gave me a script for vallium - to use as necessay whilst the prozac amplified anxiety drained from my system. It takes a while to leave your body even after 2 weeks consumption - so the side effects hang around a while - prozac has a long half life. A week later i went to see a different doc. Who announced within 5 mins i had viral labs. Looking at the symptoms, history and via examination she was 1000% certain. My blood tests were good for all the basic checks etc and that i needed to ride it out. Gave me a script for some anti vertigo drugs and told me to go home and wash the car - and basically ride it through. Said she had seen 8 cases within the last couple of months. When i mentioned the prozac story it caused some hillarity. She said it doesn't agree with everyone - particularly if you are not suffering with depression etc etc etc. I could have wept - in fact i think i did - i was not going mad after all. Had 5 or 6 GP visits since with the labs symptoms. Been told 8 - 12 weeks of 'ridding out' should see me through the worst. I asked for a referal to an ENT specialist at week 6. I saw him over a week ago at the end of week 8. Usual tests on first visit also MRI booked. Told to keep riding it !! Meds now - the odd valium and ibroprufen for the neck. Some early improvement was set back during the (missing) prozac haze. Feel to be improving again now - although mornings are worse. Chiro seems to benefit my neck probs - but not every time. My previous posts above cover the recent events and developments. Just though you should know the front end !!!! What a ride it has turned out to be !!!! All of your comments I have taken on board and will use them moving forward - for this i thank you all !! This forum and it's history of posts has been absolutely invaluable. Gloria - many thanks for your recent feedback. p.s. Brad - ive not forgotten about the lyme !! Take care, BINX1965
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Hello everyone, Just a quick update to give you my current labs weather forcast; Mornings: Some mild T on waking - now sleeping with one pillow to ease the neck - which has caused a slight increase in the morning T. Feeling of moderate fatigue still hovering around - can take a while to get going. Eyes and focus reasonably good to very good. Some mild instability on first rising - but disappears quickly having moved around a little. Neck pain currently mild to moderate. Head pressure / ache currently very mild. Ear drums feel sensitive - but not exactly painfull. Having said all of that i would rate myself over the last 2 days - mornings 65% of normal. Daytime: Improving from morning - as energy level increases. T starts to reduce and is absent for long periods. Short driving expeditions being accomplished (10 - 15 mins - non busy times). Some anxiety / anxiety type symptoms hovering around - feel these are becoming moderately restrictive to certain areas of progress. Rest breaks being taken e.g. half hour here and there on bed. Shops - forced myself into 3 big stores (fluorecent lighting / very busy - the lot) with the wife yesterday - first store felt a bit swirly and i wanted out after 2 mins - but decided to hang around and see what happened to my symptoms - wasn't bothered if i collapsed into the clothing rails / displays etc - i needed to see. The vertigo / swirly symptoms rose and then hit a plateau level - which they didn't pass. Once i got used to it i started to look around and move around slowly - no problem - managed to ignore the symptoms (ha ha labs i got you now !). Next 2 stores were the same - just plateaued out with the swirl - and rode it. Whether it's needed or not - looks like i just started my own CBT and VRT crash course. A few weeks ago my symptoms (coupled with anxiety) would have pushed straight through the roof - no plateau - i tried it ! TV watching is easier - although not on a big screen - still sicking with the small one in the bedroom. Day time headache / pressure will reflect day time activity, rest periods and loading on the senses. The same goes for the neck pain. Some very mild sweating - mainly palms - almost like i'm anxious - but in reality i'm not - brain chemicals / signals are still obviously slewing all around (Gloria - thanks for tipping me off on this one - i thought the male menopause was kicking in !). Some odd very very mild ear pain - maybe it's not pain - but a feeling that somethings going on indide there. I would rate myself over the last 2 days Daytime: 75% of normal. Evenings: Depending on daytime activities - i start to slide down with some tiredness an fatigue. Depending how i'm feeling may go out for a short 30 min walk. Last night went to a friends (just round the corner) to help him fill some forms. Sitting in close proximity with someone talking away whilst i looked through the docs really started to get to me after a while. Couldn't concentrate - he also had a 20000000 inch plasma TV screen banging away close by. Got through it for 2 hours - but wanted to go home and lie down - head banging. Evening rating 60% of normal. On a lighter note: I went to the local hospital for the MRI the other day. I've had a couple of MRI's previously (ankle / back) so knew exactly what to expect. To ease any (labs related ?) anxiety i popped half a valium tab about 20 mins before going in there. They went through the pre-questionaire and bungged me on the table. My pre-selected MRI head-phone music being Led Zeppelin's greatest hits. As i entered the tube to the strains of a Jimmy Page guitar solo - a feeling of euphoria washed over me - ahhhhhhhh the valium !! As the machine started buzzing and banging - i kept bursting into fits of laughter - each time it buzzed i laughed and giggled even more - it was sureal. They had to start again - twice - i couldn't hold still for laughing. The guy who was overseeing the test must have wondered what was happening - only a few mins earlier i had been telling him how seriously bad i had been feeling for the last 7/8 weeks (suspected labs) and this being the reason for a perusal of the inner head workings etc !! I would've loved to have been a fly on the wall in the control room - i don't think they found it as funny as i did for some reson !! As i have mentioned earlier valium does agree with me - no drowsy stuff and zero anxiety when taken. Scan rating: 150% (superb) Note to self: Need to either - see doc for more valium - or get rid of it ASAP. Currently on week 9 - 10 Will check back soon. BINX1965 x |
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Binx and all: Thanks for the update. To answer your question, Binx, I believe just Chuck and I are the only people on this board who were originally given a Labs diagnosis and it was really Lyme & co. (Babesia and Bartonella too.) But, I have since met others on the lyme boards and other dizzy boards. There is a thread on "The Dizzy Lounge" where more and more people are confirming lyme. As far as resources, I would read / study Dr. Burrascano's guidelines located here: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf This is considered "the Bible" of lyme. Dr. B's protocols have cured thousands who were sick for sometimes years. It explains symptoms, why tests are so bad, what tests to do, and how lyme is ultimately a clinical diagnosis. It also discusses treatment For labs, I believe this is typically lyme with Babesia and perhaps bartonella. The sweats, spaciness, etc is babesia. Anxiety is lyme and Bart. I have all 3. Regarding testing...please realize your regular doctors don't know anything about this complex disease. There are a few LLMD's in Germany and the UK who do know, but that is about it. I will see if I get names. Here is a great study which describes why testing is so poor. Basically, the standard tests don't look at enough bands consistently. And..lyme attacks your immune system, like HIV, so it is often not producing antibodies which the tests are looking for. http://www.springerlink.com/content/w64170894v08654g/ |
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Hi everyone Sounds like its snakes and ladders for everyone. Claire hope you are pulling out of your blip. I have slipped down slightly these last couple of days. No apparent reason for it but just a bit more swirly headed than I was. Still we know the score now. Gloria hope you are still doing ok. To answer your question, to be honest I am not really doing much more in my day nor am I exercising except the usual VRT twice a day. Everytime I have tried to exercise even slightly I get discomfort in my left diaphragm and round my back. Dont know why! Binx your posts make me smile. Like Gloria you write in a lot of detail and I can relate to lots of what you say about the symptoms. Basically as someone who is well into 21 months of labs/VN my advice to you would be as follows. This is based on what I have learned in my own experience:- 1. Getting a diagnosis is key because then you know what you're dealing with. I didn't get mine until 9 months in and my state of mind until that point was desperate, anxious, depressed and crying. If someone could have said to me from the beginning what was wrong, how to deal with it and what to expect it would have been so much easier. 2. Take comfort from this site and others like it because I did not find this site straight away and it really helps psychologically to read other peoples' experiences. 3. Unless you are in a very lucky minority don't expect to find an ENT who knows much if anything about this condition or to diagnose you. Push to see a neurotologist or a neurologist. Do all the vestibular tests and get referred for VRT. You are still in the early stages and maybe you will be lucky and get over it quickly, well quicker than some us on here!!! I kind of had a gut feeling mine was not going anywhere quickly and unfortunately I was right. However even if you don't see fast improvement, take heart that you will improve. I have found that what was once a 'good day' is now a 'bad day'. It's slow going and so many times I have wondered if I will ever be 'me' again but I still have to keep hoping. There are millions more things I have forgotten or could say but I won't go on for too long as much of it I have said in earlier posts. Hope it helps a bit. Ashley, how are you at the moment? Did you sort out anything with your work? Everyone else take care Jemma xxx |
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Hi all Well for the past couple of weeks I have been totally up and down the old snakes and ladders board. One minute I think I am doing really well and the next I'm back on the good old rocking boat!! I think my neck definitely plays a big part in my bad days and I have most certainly felt worse with the terrible winds we have been having here in West Yorkshire. Why does the wind effect dizziness so much?? I actually need some advice from you guys. My private consultant told me in October to start VRT therapy but suggested I did it on the NHS as I had already paid a lot of money in hospital fees and had no medical insurance. Anyway my GP referred me to my local hospital and after an initial consultation I am STILL waiting for an appointment. I am now thinking of paying for the treatment privately but I want to make sure that it will definitely be worth it. So do you guys really think that I will benefit from VRT therapy after 9 months of this illness? Jemma - I went to see my doctor a few weeks back about a phased return to work but he did not think I was strong enough. Anyway I see him again in a couple of weeks to discuss doing a few hours at work a few times a week and then gradually build it up. Am I ready for work? Do I think I will cope? Truthfully... NO!! LOL!! I have to try though otherwise I will regret it. How are you doing now? Do you hope to return to work at some point? BINX - I can relate to so much of what you say. When I read your posts I think that was me! Keep strong, lets hope you are one of the lucky ones that recovers quickly. What I have been experiencing lately again is the hot flushes and tingling that brings along a wave of nausea. I am not dizzy when this occurs so I don't understand what is causing it. It does worry me because I feel awful when I get these hot flushes. My mum joked the other day that I could be going through early menepause!! I'm only 24 years old!! My body temp is always also generally high lately. In bed I am always so warm. I could understand these symptoms at the start because I was fighting the infection but what could be causing them now? Is it possibly a bit of post viral syndrome? That could also explain the horrible fatigue I sometimes experience. Gloria/Wendy/Claire/Shirley and the rest of the crew - hope you are all well. Take care all Ashley xx |
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Hi there! I have been reading your comments for the last 3 months and was afraid to comment myself. I have been suffering with weird vertigo type episodes for that long and felt alone in my world. It started months ago with just a few scattered dizzy spells that I chalked up to blood sugar and then in late Oct got dizzy more and more until November when it went into full swing. I don't feel the room spinning rather I feel like I just got off a merry-go-round. Lately it has changed to a fog that creeps in my head and I feel like my head is being pushed down and sometimes to the side. My vision gets strained when it happens. I take a sedative and it usual feels much better for the rest of the day, but some days are worse then others and it lasts all day. The symptoms aggrivate my mild anxiety into severe anxiety! I was first diagnosed with Labs, but today the ENT said he is no longer thinking it is inner ear and is sending me for a brain scan. I think that scares me a bit more. I have been unalbe to work more then a few hours a month and am a single mom. I'm tired and stressed out and don't have much of a support system. I'm sorry to go on and on, but it feels kinda nice. Any feed back would be great. Like all of you probably feel, I just want to be me again! Thank you so much for listening. B |
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I tried to post before and it did not. I'm trying a small post again to see if it works. Thanks for the patience! |
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okay so i do feel like i'm getting SO MUCH better... but does anyone wake up at night feeling relly wierd like tired but wide awake and you want to sleep but cant? |
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Hi folks: Here are some EU resources for lyme that I have found. http://health.groups.yahoo.com/group/EuroLyme/ http://www.lymeinfo.net/international.html United Kingdom: Lyme Disease Action Website: http://www.lymediseaseaction.org.uk/index.htm I have the name of a new MD's in the UK who do treat it, but the reviews aren't as positive as I'd like. Apparently they are not agressive enough. Apparently most go to Germany / Switzerland for proper treatment. |
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Hello everyone, Bored - so fanncied posting something - and posing a few questions ? PLEASE do not feel obliged to answer all or indeed any of the questions. If you just want to reply to one question area that would be of help / interest. The questions relate to recovery times from what is being called / diagnosed as labyrinthitis. Official medical type pages on the internet talk of a recovery time from labyrinthitis of 3 - 4 weeks. Seemingly non official medical type pages on the internet talk of recovery times for labyrinthitis of between 8 - 12 weeks. Discussion forums on the internet covering labyrinthitis and inner ear disorders seem to talk about recovery times of 3 months and upwards. Question(s): why the big discrepancy ? is it that no one really knows what's going on and labs is just a catch all for some inner ear prob ? Is it that everyone is different and just recovers within their own time - given nature of damage and individual immune system strength ? Does the virus get knocked out within a given time scale - and it's just the damage (uncompensated signals / chemicals imbalances / post viral symptoms etc) that we are living / coping with afterwards that carries on ? If you have had this long term - is there still a viral element hanging around - or just the inner ear damage etc) ? If the virus is gone - why do people still complain of tiredness / fatigue ?? Why are some docs (general practitioners - not specialists) confident to give a diagnosis of labs straight away - without referring to a specialist and undergoing loads of tests ? Why are some ENT specialists still clueless - when this seems so common - is it because it does not fit exactly into a box like some other inner ear conditions ? How is labs brought on by stress as seems to be suggested on some of the official sites - i can imagine it being made worse by stress - but not brought on by it - it's viral or bacterial isn't it ? Anyway - that's my brain emptied for the afternoon. Apologies in advance for the questions - especially the ones where i think i already know the answer - but would like an alternative spin. Killing some time with a few VRT exercises (pulled from the net) this afternoon - what's the harm !! Felt up at 85% today !! Could be i'm an 8 - 12 week type ? Here's hoping !! Standing on one leg with my eyes closed is still a laugh though !!!!!!!!!!! Take care of yourselves, Binx1965 |
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Hey everyone Well I wrote a long post yesterday but it doesnt seem to have been posted so I will start again but it's just going to be a short one today as im feeling rather rotten! I've been up and down for the last couple of weeks; I would say I have had more good then bad which is a bonus but I have been constantly bad now for 4 days since the gales began here in yorkshire. The winds have died down today but for some reason my head hasn't :-( I've had the swirlies really bad. Why does the wind effect our dizziness? I can understand it causing pressure in the ears but not dizziness. Or is it just me looking for an excuse again? Anyway I need some advice. Does vrt work when you start it late on in the illness? I ask because I'm thinking of paying private again. I've now being waiting 5 months on the nhs for an appointment!! Jemma - I went to my GP a month ago to ask if I could do a phased return to work and he did not think I was strong enough. He was right! Anyway he has agreed to consider letting mr back for a couple of hours a day in a couple of weeks time if I'm ok. Do I think I can cope?.. Honestly no! Especially not the way I feel today, I can barely move around. But I know I have to try because there is only so long I can cope with no money and I desperately want to finish my qualification. How are you anyway? Do you hope to return eventually on a part time basis? Everyone else - I hope you are feeling better than me! Lol! Take care all Ashley x |
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Hi all, Still on a loan laptop - no sign of the main computer being functional at present! Daren't ask hubby for an 'E.T.A.' on when it will be working!!!! Binx - viral labs sounds spot on. More or less like me - upset stomach for a couple of days, then a few weeks later major headache, sickness and a chest infection from hell. I have never smoked, but sounded like I had been on 50 a day!!! After a few visits to doctors did one say she thought it was something called labyrinthitis - never heard of it. Basically, all the people and specialists I have seen through all of this do not know and have never been able to say what a huge raft of odd symptoms people can experience. As Jemma said, if someone could tell you right at the beginning what to expect like the sweats,odd head pains and feelings, neck stiffness and muscle aches etc etc - it would have been a lot easier to deal with. One small piece of advice from me Binx would be to ease off the valium if and when you can, as this can interfere, if taken a lot, with the compensation process of your balance. I have had horrendous reactions to meds given to me including Prozac. I have taken with some success and no real side effects, is Amitriptyline 10mg. It was given to help with my migraines. It hasn't worked for that, but helped hugely with the anxiety issues, gives you good sleep. I should take it ongoing, but take it for 2-3 months to get me back on an even keel then reduce off of it. I hate taking meds to be honest. The other thing with this is that it doesn't interfere with the compensation process. So maybe try that rather than valium. What I take also is just a herbal valerian which I buy from Holland & Barrett. It's called Valeria for day-time stress and made by a company called Pharbio (?). It stinks but a couple of tablets twice a day helps. Just suggestions though. Love the story of your MRI - priceless. Know how you have to be absolutely rigid - so can imagine the technicians didn't appreciate your euphoria!! Ash - sorry you are still having such a bad time. Do keep hope it will get better. As Jemma says, what we considered good days a few months ago are now what we think are bad. It is just so snail like in getting better with the rotten big dips along the way. VRT will help at whatever stage you start it - you just have to be relentless in doing it EVERY day!! Jemma - I should have kept quiet, but hopefully a small blip. Weather so impacts on this. My latest VRT lady said the main things that impact on how good or bad you feel apart from over tiredness and stress, is the weather and hormones!! Anyway, me - been to the gym, power walked 2 miles today (!!!!) - don't know how long this will last, but need to get fitter and not slump into a world of not doing anything until I'm 'better'!! Positive thinking in vast amounts required! Onwards and upwards. Take care all. Love & hugs, Gloria xx |
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Would like to post, but am having trouble. |
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Hello everyone, A few of my posts seem to have dropped down a hole somewhere. Big thanks to everyone on here for their info / advice / encouragement / experiences. Gloria - you seem to have been through it all at one time or another. A veritable mine (or is that minefield) of inspirational knowledge / info now to hand. Ashley - you mention VRT. I am early on with this labs thing - but i started doing some self VRT commencing 2 days ago - figured what harm can it do. Can't wait around for the NHS to tell me anything. Loads of examples on you-tube and the net. Feel better already - and will carry on unless someone tells me to stop. I feel my eyesight and coordination and balance sharpening - even after 2 days. Spending 1 hour late morning and 1 hour in the evening - combining the various exercises - not just the eye / head stuff - but also the various walking (head turning) combos. The tight figure of 8 was interesting the first time i did it ! I am pushing each one until slightly dizzy / vertigo-ish then resting for a while. After completing each session i end with standing on one leg (eyes open) for one min - then on one leg with eyes closed for as long as possible (be careful where you do this because of the falling risk) - taking turns with each leg. With the eyes closed - i guess you are then just reliant mainly on the ear balance mechanisms - i am using the eyes closed bit to measure my progress - it may not be a good way of doing it - but it's something more than nothing. Hopefully - my brain is learning something new and re-programming accordingly. My ENT seems to figure that your balance is acceptable if you can walk without falling over - with no regard to any dizzy / vertigo-ish feelings swimming around in your head. Just take your time and don't push yourself too much. Getting down the gym (as Gloria suggests) must also provide some self VRT and other benefits. Just the environment, general atmosphere and some of the exercises must not only help with overall balance, coordination and stamina - but also with draining out some of the anxiety related rubbish. Try to eat well if possible - although i am aware from various posts on here - some people struggle with poor intake - indeed wasting away. If you are struggling to consume - then make sure you are popping a good multi vit. As you live in Yorkie (God's Country no less) - Get yourself along to Bridlington and Scarborough promanade(s) at the weekends. The walks and the fish n chips will do you the world of good. Just remember that hat with ear flaps if the winds blowing. Only kidding about Brid and Scar - but something similar (walking wise) may be beneficial. Like you - i just wish i could wake up tommorrow and it all be gone !! I am sure one day it will be - but with a bit of pushing i am hoping that day will be sooner rather than later. Gloria - on a final note. The chronic neck pain i was experiencing from the start has almost completely abated over the last 4 days. All i am getting now is a slight sensation of the thin muscle layer pulling / flexing under may scalp. Maybe it's all re-configuring as my head balance starts to sort itself or it's the 'out of balance' signals have changed from my ears /brain. Eyesight is sharpest it has been in months 100% of normal - maybe my self VRT is helping with that. Headaches if any are very mild. Still some T hanging around - but not the constant companion it once was. I also concur with others on here that weather conditions do have an effect - it can vary my general feeling of wellbeing / health by at least + or - 10% on any given day. Some very mild pressure / pain feelins in my ears - now and then - but so mild hardly noticeable. My ear drums still feel sensitive to cold / wind etc. Still feel somewhat fatigued in the mornings - even after a good nights sleep - but by mid-day this has completely passed and doesn't return until late evening. As for the valium (ahhh the valium) i now only take a little nibble now and then - not every day. When i do it's usually a quarter of a 2mg tab - so 0.5mg - and only when i think anxiety will get the better of me. I need to knock the stuff on the head completely ASAP - but at present need to keep it close by - just in case. Ahh well enough of me banging on. Up the ladders !!!!!!!!!!!!!!! BINX1965 |
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Hello all, Just a quick update> Went for VRT today went in thinking what a waste of time I'll make this my last appt, came out thinking right lets hit this thing so will be doing my VRT everyday til my next appt in 6 weeks!!! Had a good chat with the therapist & she really thinks the blips are more frequent as my brain needs to compensate & it isnt on its own, if the 6 weeks doesnt work then I will give up but if I see a real improvement then I will keep goiing til its gone completely. Something has to work!! Still swirly etc the weather is a big factor, Ashley & my therapist confirmed this for me today, along with health (colds etc) & hormones!! I would try for VRT if I were you I am happy to send you a copy of my exercises if you inbox me your address. Also have some neck & shoulder relaxation exercises to help with the tightness in my neck, so a little more positive today :) Jemma & Gloria sorry your both in a blip too at the moment i blame the weather, gloria well done on your exercise thats brilliant & it cant hurt can it? I am still going to the gym regularly it def helps me even though i still need to lose a stone!! This time last year I was on my way to losing 1.5 stone how quickly that all went back on!! Oh well at least I dont feel as terrible as this time last year :) Hope everyone else is okay Claire xx |
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Hello, Reading all of your experiences is a huge relief. I have such varied symptoms and the ENT has me feeling like Labs is black and white with specific symptoms and lasts NO LONGER THEN THREE MONTHS! I think he may be very mistaken after reading all of your stories. I cannot imagine having this for years. I'm so sorry that some of you have. I hoped so badly I would be recovered and back on my feet in a few weeks, but it has not been so. I had a "relapse" in January after a bout with a very unpleasant stomach flu. I don't sleep at night, sometimes my ears feel as though they may explode, I have developed this congestion in the evenings that last until morning and my muscles are stiff and sore. I feel rather like I've been beaten, in an all around sense. Knowing that it is normal to have these relapses and odd feelings make me feel less "crazy". Thank you for your stories and any feedback you can give. I try to be as active as possible, but am nowhere near where I'd like to be. I hike when I can and I am able to keep up on the house work. I feel like I should be doing so much better at 13 weeks. I wish I could go back to work as the stress is at a very high level and somedays seems to make it all a bit worse. My teenage daughter is so patient and suppotive of me, but she is a hard time with the length of all of this. Thank you for listening! B |
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hello everyone! I was diagnosed with labs in June 2008...Ive had it ever since!! Im a guy, I am now 25 years old..so its almost been 3 years!! The dizziness does improve and will eventually go away..but youve got to stay active. But with me after the first 6 months something happened to my legs...they gave way and there was just comprehensive weakness in my legs. I dont know what it was...some kind of muscle disease which was triggered by labs..who knows...but it has pretty much ruined my life. My legs have been recovering ever since..but never been the same...I fear they will start to deteriorate once again. All the scans have come back fine...my neuro says its nothing...erm I can barely walk! This experience has taken almost everything away from me...it is a blessing! |
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Hello everyone, B and KAM if you are new stick with these pages - there is a wealth of knowledge and experience dipping in and out of here - which will be of great benefit and comfort. You are not going nuts !! A good starting point is to read all the posts (pages 1 -13) if you have not done so already ! B - there looks to be nothing unusual with what you are experiencing - you will read about the 'snakes and ladders' effect of labs in detail on these pages. In addition - it seems like any sort of illness during the recovery period causes a setback - and a slide down a snake. But you will bounce back up. I have done some 'up and down' recently myself. KAM - I am only at week 9/10 with this thing so not sure if the leg probs are associated. I do know people who after long illnesses that have suffered from CFS and this has affected their mobility etc - but i would only be guessing. Someone else on here may be able to offer a better insight / support - if what you are experiencing is labs related or not. I have a quick question about driving if anyone can help ? You will note from some of my previous posts that i have started to do a bit of driving - 10 to 15 mins in the evenings - nothing too heavy just around the local area - not too much traffic to contend with etc. This has been OK. Last night thought i would push it a bit more. At the 20+ min mark i got a head swim and feeling of lightheadedness - and had to pull over - when the head swim started (i could feel it starting) the anxiety and panic reared itself - although not to anything like a full blown attack. After getting out of the car and sucking on a 'silk cut' for a few mins to allow the anxiety to subside - i got back in and continued home (5 mins). Upto this point my driving had been excellent. A feeling of unsteadyness (vertigo-ish) then stayed with me the rest of the evening - but by morning was completely gone - and i feel reasonably good again. I had felt confident and relaxed upto the point of the 'swim' and not at all anxious - it just came on ! As i am sticking to the local area i had been cornering a lot - and also lots of stop / starts / junctions / head turning etc. In addition - by sticking to the suburbs / local area i can stop safely almost anywhere if there's a problem of any kind - so certainly no dangerous stuff - or worries about having an accident etc. I have never suffered from any sort of driving anxiety - so this is directly linked to the labs stuff and associated sensory / chemical triggers. Can anyone out there who re-started driving after the chronic / initial phase of labs - give me an insight into how it went for them ? Any tips would be useful. Did anxiety / panic cause a problem - or was this only triggered if the swimmy stuff started whilst behind the wheel ?? Anything would be useful ? How did you get fully driving again ? Jemma - i think you and 1 or 2 others have been through the driving stuff and come out the other end. Many thanks, BINX1965 |
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Hi all, Welcome B and Kam. Myself and others on here can only share your plight and know exactly how you feel. B - you are so right about the lack of wide experience ENTs have. When I paid to see a private guy right at the beginning he said it would be over in a few weeks especially if I saw the VRT physio and did the exercises every hour, I would see the back of it after 3-4 months!! Ha ha ha!!!! That was a ploy to make even more money out of me by seeing a private VRT physio (£85 per hour every week)! I'm not downing VRT because it certainly helps, but to push you into seeing someone more regularly than you need to just to get money! I also empathise with the muscle soreness thing - as you say - just like you've been beaten up! This thing is just more than dizziness. I saw my VRT physio today and she said that to pursue with VRt exercises, normal day to day living and fitting in a half hour of listening to a relaxation tape or relaxing music and completely relax. She advocates this strongly. She said that when we are fighting or rather our brain is fighting to compensate and keep balance - it exhausts our bodies and therefore, is a must to help it unwind in order to cope. Difficult for those with family responsibilities. B you will start to feel better. as you probably have read, it all takes a blooming long time. 13 weeks is I'm afraid to say a relatively short time. It may sound scary to hear of those of us that have had this nearing 2 years now, but we have been living too - just a bit more effort required and to have the patience of a saint!! Your phases and symptoms do get better. Keep in touch on here - it has helped us all. Kam - your leg weakness sounds so unpleasant. Can you do any leg or muscle strengthening exercises or is that difficult for you? I think I would like to have a second opinion if I were you and fight to get one. This is a nightmare with all sorts of other issues rearing their ugly heads. I told my doctor that all these other things I have only appeared after labs came on the scene. See another doctor and try to keep positive and that you will get better. Claire - know where you are with what is best to do or not. Drives you nuts trying to think what works or doesn't. Seems we are damned if we do and damned if we don't. I'm back doing my VRT religiously. As i said before, it certainly helps, but not sure about getting rid of it - that I think is a time thing. As Binx said - up those ladders for us all!!!! Have you got any new exercises? Would be interested to know. As regards the weight thing - absolutely with you on that too!! My 2 stone I lost has gone right back on! Joined Weightwatchers last Monday!! Deprivation of all the things I like to eat (wish I could say drink!!) and labs - oh the joy of this life!! Hugs to you Claire. Binx - you clever strong guy! You really are a positive inspiration. Well done you on getting your own VRT on the go. Am sure that is why you have started to see a difference. Onwards and upwards on those ladders eh?!! My head and muscles are not good today - maybe because I was feeling a bit better yesterday and started dancing around the room to my fave music on the radio whilst I was ironing!! Obviously it doesn't like me having any fun! Take care all. Love, Gloria xx |
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Hi everyone Gloria, SNAP We have had computer problems in the last week. My daughter is doing A Level Photography and was researching a "risque" photographer when was hit with a virus. We have AVG protection to stop this but like anything not 100%. Took to the local computer shop to be fixed and have another protection with it. Did your hubby fix yours? Thanks for all the VRT tips i have always followed yours even last summer when i was just reading the posts very helpful thankyou. Like you am carrying out them religiously as determined to kick this labs away! The dizzies have been to a level i can cope with in the last week but like you and others have been getting muscle aches, neck stiffness and like a tight feeling in my head, also wobbly legs at times. So hard to imagine all these symptoms related to an inner ear disorder. Thanks for your advice about ear syringing, have got an apt in couple of weeks Claire, not attempted cinema yet as still so sensitive to noise, once my ear settles down will deff try to go. Did manage 5 hours shopping and just walking around Canterbury the other day! Obviously a few coffee breaks in between (should i say decaff green tea breaks these days as coffee forbidden). Felt fine afterwards, although new handbag had something to do with that! Even washed car and felt okish after that, yet today not done so much as feel like steam roller paid me a visit in the night. Hope your girls doing ok at least half term coming up. Ashley, know what you mean about the wind affecting the dizzies, bet you have had it quite bad up there, still you northerners are tougher than us southerners!!! Have you decided if you are going back to work yet. Think hard as you dont want to knock yourself backwards. Jemma, i felt at the end of the book it was awful as she left it that you didnt know if she had recovered or not, bit of a let down as it is the one thing we are all wanting the answer to, will our labs ever go!! You must miss your job, after all the training you must have done must be so frustrating to have it all put on hold. Binx, well your posts are something else. Very entertaining. I find when i am doing VRT and standing on one leg thing, my affected side (which is the right ear) my right leg is more steady than my left, and yet i feel it should be the other way round, none of this labs thing makes any sense. Have you done more driving yet, i feel ok, apart from when you stop, it feels like i need a couple of minutes to come to before falling, no getting out of the car!! To everyone else positive thinking and all that!! Am going out to lunch next week with a group of 12 girls from where i used to work, am so looking forward to seeing them but feel apprehensive at the same time as feel so detached from the work place, you know office politics etc. Lots of love Wendy xx |
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Hi all: KAM. Welcome. As an FYI..."Severe Muscle Weakness" is a very common symptom of Lyme Disease (yes, I'm a broken record.) I know many who have had it and who have recovered with proper treatment. For those of you in the UK, here is an article about an Essex woman who is claiming the NHS failed to diagnose / treat her lyme. Her symptoms are different. SHe has no labs symptoms and has more of the "typical" pain / fatigue. (I never had that.) Interesting article http://www.thisistotalessex.co.uk/news/Mum-left-virtually-bed-bound-NHS-fails-identify-illness/article-3196302-detail/article.html Here is a link to John Hopkins University's article on Labyrinthitis, which they have shown can be caused by lyme: http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/vestibular/conditions/labyrinthitis.html Excerpt: Causes (of Labs): Bacterial or other infectious organisms, for example the organism that causes lyme disease |
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Hi B & Kam, sorry you had to find this site but glad you did its been my survival guide over the last year!!! B my ENT (private) told me the same as yours it will go soon, do VRT & goodbye! luckily I got my VRT on NHS & they have been really good its almost like a counselling session for me as they are the only people who understand & explain this thing. She told me yesterday that the way this thing goes is that you will have blips where you have bad days/weeks then it will subside & so on it seems that the blips will get fewer & further between until it eventually goes! Wish we had a crystal ball to know exactly when that will actually happen. I am now going to do my VRT religously evetry day to try & blitz it I also go to the gym & walk whenever I can its also important, as Gloria said to rest & relax in the day too. Funny how Glorias therapist said exactly the same as mine, so at least we know they know what they are talking about (unlike Docs/ENT's) When I think back to this time last year & the first 4 months with this I am better its just very slow going. Just remember the things that make you dizzy are the things you actually need to do to help the brain compensate for the damage caused to the balance system so in a way dizzy is good!! I have 2 daughters 13 & 11 they have been so good throughout all this but they would love their 'old mum' back :) Kam you have had this for so long sounds awful for you & you are so young too. It seems that nasty viruses are the cause of this whole condition & sounds like you had one which maybe affected your muscles too. I suppose like you say you just have to stay active as much as possible & hope that you improve before the 3 year mark. Gloria we are on all the same levels at the moment I am doing WW online so counting my pro points daily :) Not eating my extra allowance all week but taking hubby out for a Bday carvery on Sunday so going to blow some then. VRT is the way for me I'm going to be really good & do it every day for the next 6 weeks. All the ones she has given me are related to head turning (my biggest dizzy provoker) with my eyes closed & standing on foam/cushion I'd be happy to send you a copy & my neck relaxation ones too, my therapist also said the same as yours & that we must take time out in the day to relax so I've started treating myself to watchig the re runs of ER on the new sky channel, well thats relaxing isnt it?? Good luck with WW & VRT :) Claire x |
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Hello all you wonderful people!! Thank you for your wonderful feedback and support. Support is something I have lacked, with the exception of my fabulous daughter. My family just want me to ignore the symptoms and get back to work. I wish I could. I don't have spinning as I said earlier, but more of a foggy brain and the feeling of being pushed down. It is every morning/afternoon and the sedative helps me get past that. I have swirly unsteady feelings often after that, but work hard to make that pill the only one I take in a day. The anxiety is so very hard and as soon as the symptoms set in the anxiety follows. I have been anxious for the better part of my life, but only mildly. I have to say the brain fog is one of my least favorite symptoms. It makes me downright "special". After I ask my daughter the same question 3 times in an hour she just pats my head and says "poor mommy". I can laugh about that. I have to say the symptoms are better then they were in the begining, but it all still SUCKS!! You all are so very brave and I can't help but hope what Brad saying is true, as there is a cure for lyme! I live in Montana and my ENT has never once said VRT to me. He tells me to just call on the phone. I looked it up on the net and picked up on a couple exersizes. I don't do them as often as I did, but I do get up and move around a lot. I wish more. Kam-I don't know what to say except that I am so very sorry you have to suffer this along with everything else. Does your Doc recommend PT? I would think that could only help. You are so very young and I hope it resolves very soon for you. Binx-You are refreshingly upbeat. I don't know how you do it. I have never had a hard time driving, weird I know, it has rather been relieving for me. I did have trouble driving at high speeds on the interstate, but made myself focus on the road in front of me and tried not to whip my head around to much. I would say the labs in the culprit, not so much the anxiety. Although anxiety is aweful and I think plays a huge roll in this, for lack of better words, Nightmare!! Gloria & Claire- Do you find a healthier diet helpful? I was on this great diet and hiking everyday right before this happened and have not been good since. I have a hard time putting a lot of effort into dinners and always seem to pick the easy fixens, which are always bad. Do you have any recommendations? Thank you again so much for being here. I hope to be supportive to you all in return someday. Have a wonderful weekend. Best Wishes All, B |
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I forgot to ask, has anyone taken a diretic for the labs? My ENT said he would only treat me for one more month to see if the diretic worked. He has me scared. Anyway, I am allergic to an ingrediant in the pill and have not taken it yet. I fear new meds. Silly, I know. I was wondering if any of you had taken one and had results. I'm off to my brain scan today and am very nervous. :| B |
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Hi all, Thanks Claire for the offer of a copy of your VRT etc - I'll send you my address. To be honest, I'm still out on the VRT thing even though I will do it - but if it has helped, then my goodness it doesn't get the award for the most fast-acting therapy LOL!!! Like you not eating my points allowance - I still think 29 points of food is too much for me to lose weight - but I do expect to lose a stone in a day!!!! Have a lovely day on Sunday. Wendy - great to hear from you too. Good on you for a bit of retail therapy - I treated myself to a new bag last week as well. Had to secretly stash it away in the cupboard as my hubby will say why do I need yet ANOTHER bag!! They have no clue do they!! Talking of which - no he hasn't fixed the computer yet! Still on a friend's laptop. I have a feeling he will say we need another computer - can't afford that so keeping tactfully quiet!!! Glad you are in a fairly stable phase and are coping, but it seems if the head is a bit easier then all the muscles take their turn to be horrendous. Enjoy your lunch next week. Know what you mean about being detached from the work place and all the gossip that goes on. I miss my job and just wish i could feel that much better to be inclined to look for something again. I've worked all my life and had a reasonable career - until this. Your confidence gets knocked right back doesn't it? Keep doing well and the VRT of course!! B - Montana from what I've seen of it (films and picture only) looks magical. We've visited relatives in British Columbia and toured around which was just heaven. Doesn't matter where you live if you have this labs thing though! You're right - this sucks big time! Like you B, I never had room-spinning vertigo, but the fuzzy, heavy headed brain fog and swirlyness accompanied by muscle aches especially in my neck and shoulders. I would certainly ask about VRT - you can gather from our recent conversations it is worth doing. Or like Binx, get some exercises off the internet. Look under Cawthorne-Cooksey. As for diet - well, I have stopped caffeine and drink only decaff tea and coffee. That was recommended to me for my migraines which is still an issue with this whole thing . That said I have found it has helped. As regards other food. Well, I like my food, healthy or otherwise. I try to pretty much eat as much fresh stuff, but do go down the ready prepared stuff too. I'm not too sure it makes a huge difference as long as you exercise regularly and are pretty healthy otherwise. The diuretic - I take a low dose for blood pressure - it hasn't done anything for my labs. I think if your dizziness has been diagnosed as menieres - then that is related to fluid build up in the middle ear and water tablets then help. Anyway B, good luck with your scan - it is scary, but it is just to cross off the nasties box. Let us know how you get on. Have upbeat week-ends all. Love, Gloria xx |
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Hi Wendy, didnt see your post on here yesterday when I posted mine! Well done on the shopping trip & getting a new bag, a girl can never have enough bags or shoes/boots!! I also have had the wobbly legs & tightness in head i describe the leg thing as 'dizzy' legs as they coincide with my dizzy head all very wierd, but thats Labs!! Im hoping my blip will subside soon had the vertigo the other week lasted about a week but I tto now just have the brain fog, hard to describe that one isnt it also get a real rush of pain to my head when I get up from a chair or out of a car like a 'head rush' feeling, horrible!! Yep half term is loomimg I have my cousin & 2 children coming for a few days but on the Friday I am off to sussex for a few days to visit my oldest friend (known since we were 5) so cant wait & whatever happens Labs will not be stopping me!!!! Long bus journey so hope I can cope with that. I am doing my VRT religously (2 days in!!) so will make sure I keep up with it to see if it helps. Anyway enjoy your lunch out & have a good gossip catch up. B sorry you are in the depths of this horror, the anxiety goes hand in hand unfortunately & I too had a little pill help at the start but found that 6 months in I could cope alot better & managed to control the anxiety by myself I now dont take any medication at all. The reason you feel the anxiety is because the dizziness sends your body into panic mode & you get the whole 'fight or flight' effect where your body prepares to battle or run away, the adrenaline kicks in, the heart races & everthing kicks off!! Try relaxation tecniques they really can help. A healthier diet does help i find too much sugar/salt caffeine/ alcohol just aggravates everything & its important to keep well hydrated keep fluid levels normal. Exercise for me had been vital mentally & physically & even just walking every day can help the brain to compensate especially on bumpy uneven ground or with someone else so you are turning your head more whilst talking instead of focusing on one spot on the ground. These are all the advice of my VRT therapists & they are the only ones who seem to know anything about this. i really hope your scan went okay i had one in March last year & it was all fine its good peace of mind. Gloria, will sort all that out for you, no problem have inboxed you too. Take Care Claire xx |
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Was thinking about this group today and just wanted to pop on to say hello briefly. I haven't been on here in probably a year. I know how much of a help it has been to so many people that this thread exists, if only so that you don't feel so alone with the dizziness. Nobody can understand unless they've experienced it, and it's amazing how many people have been affected by some prolonged episodes in their lives. My dizziness started in October 2009, so that was more than a year ago. I thought I'd never be better and spent all my time surfing the net for answers that my doctors couldn't provide. I came to this thread a lot to vent, but eventually had to stop as it was depressing me. I just kind of let go and let God, as they say. I believe my doctors now that I have vestibular migraine. I am 95-99% back to normal all of the time and I have gotten better and better and better as the months go by. Only recently did I think, hey I'm not feeling too disoriented in the grocery store! Stores always made me feel lightheaded or sort of drunk-headed, but not so much anymore. My doctors want me to take a low dose of topamax everyday to keep migraines at bay, but so far I have restrained myself as my husband and I want to have more children and you can't take that medicine while pregnant or trying. Eventually I will when I'm ready, but I've learned to relax with my condition. I've learned that life goes on and I can still enjoy it even when I'm dizzy. I have good days and bad days with it, but mostly I'm fine. Your brain will slowly, slowly compensate and you will get much better. It might take a year or more until you're feeling more like your old self, and it will be up and down the whole way. I just wanted to send some encouragement to anyone who's scared right now that this will ruin their life. It won't! Do the VRT, See a neurologist-- not just an ENT-- for testing, try different medicines if you like, keep pushing through! You'll get there! best, Jess |
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Hello everyone, Good to see a few bits of positive stuff in the mix !! On the subject of VRT - you will see i have been doing some stuff off my own back. Got on pretty well with most of it - no major probs at all. Added a new one into the mix tonight - the 'head roll'. Standing up - rolling the head and neck - very similar to a physio exercise for someone getting over a neck problem. As i had been getting on so well with the other exercises - i just crashed straight into it. Did it for 10 seconds then stopped dead. On stopping i found myself in a ten vodka spin - although this subsided (sobered up) relatively quickly (10 - 15 seconds). Tried again in the other direction - same effect. Did not proceed to doing it with my eyes closed for obvious reasons. Looks like i've found my main VRT nemesis - and i prepare to do battle over the coming days !! Once concoured - it's then straight onto the kids trampoline for more punishment. I'm thinking of starting my own classes. Anybody up for it ? There will pain, serious suffering and discomfort - but you will never have laughed so much in your life !!! Hope everyone has (or has had - depending on when you read this) a good weekend. I am removing all the snakes from the labs 'snakes and ladders' board in order to immediately facilitate an upturn !! Next week will be week 9/10 for me. Take care, BINX1965 P.S. I was only jesting about the trampoline and VRT classes. |
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Well, my scan came back clear. I am happy about that, but frustrated that there is, yet again, no answer. I know you have all gone through this and I just need to accept there is no answer. I fear I will never be good again. It has been a very swirly day. I stay low on these days. Makes me grumpy! I hope everyone else is having a great day and feeling on the up and up. Gloria, Montana is very beautiful and I love it here!! I live in the mountains in a place called Missoula and am so in love with the city. It has terrible inversion, that create some yucky allergies, due to the mountains and you really have to get used to that. But, I am an outdoors gal and LOVE to hike, so this is the place for me. I have never been to Canada, but I hear it is just as beautiful! I've never really been too far from home. Claire, I feel like I will never be able to not take the pill, but I may be wrong!!! I will take your advice and get out there hiking again!! I know you all know what you are talking about so I better listen!!=) What is NHS? I did look up a couple VRT exersizes and did them for a bit, but will start up again. Couldn't hurt right? Thanks again! Stay well all B |
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Hi all, Jess - thank you so much for taking the time to send an update. It helps so much to hear of people who are progressing and positive. Gives us all hope. Long may you feel well. Binx - funny you should mention the trampoline!! My VRT therapist only said the other day that those who are able to get a mini trampoline find it hugely beneficial and has suggested that to me. This is because I said to her that after a quick boogey to some music my head was throbbing and tight and horrible. She said that's what I need to do more of and suggested the trampoline!! I have swing-ball, I have skipping ropes, I have an exercise ball - maybe we should join forces and open a VRT gym!!!! It is amazing how quickly the brain becomes used to things. Once you have found the exercises that are suitable for you - keep doing them but increasing the time. In other words if you can do an exercise and it doesn't have much of an effect after your normal time frame, then increase until it brings on your symptoms again. Apparently, if you can do a movement for 2 minutes, then you can consider stopping it - VRT info not mine. Good luck Binx. B - good news about your scan. It is a relief, but then you think why hasn't anything shown up! That is why this site was my saviour. I found that so many other people had the same symptoms as me and that I wasn't crazy - but the doctors never mentioned any of it. Where you live sounds a beautiful part of the world to go hiking in - and the more you can do of that, the more it will help you. I love to walk and the UK has some beautiful places too - just on a much smaller scale! My hubby and I love the coastal walks of the South-west of England, but then Scotland and Wales are quite mountainous and beautiful too - just our weather is a bit unreliable to say the least! B, the NHS stand for the National Health Service which is our medical service in the UK. Everyone who works and pays tax, pay an amount throughout their working life, deducted from their monthly salary, to contribute to their medical costs and welfare for their lives which is why we don't pay for our medical care directly like you do in the States. Our system I have found to be excellent all things considered and we are lucky not to have to pay. Having gone privately at the beginning of this labs horror (privately is quicker than waiting for an NHS appointment) showed me just how expensive health care is if you have to pay. My blood tests, as I said recently cost me £1,000 (not sure in dollars, but a lot). As regards your anxiety thing B - look back a few posts, I told Binx about a natural herb called valerian, which I find helps me. It is calming, but has no side effects like chemical medicines do. Maybe if you can get that it could help? Anyway, move, hike, do VRt, scream, but know that we all support you. Take care and feel better soon. Good week-ends all!! Love and hugs, Gloria xx |
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Hello everyone, Hi B, can really sympathise with the way you feel, it is so hard to cope with. I found doctors and ENT not very helpful to say the least. I have gained so much from reading other peoples posts on this site, ie, VRT tips from Gloria etc. Unless you have suffered from this illness it is very hard to explain to anyone else and can be isolating. Glad your teenage daughter is understanding with you, i have two teenagers and they have both been really good, glad they are not any younger, hard work! Good to hear your scan was clear, but also doesnt help how you are feeling now, as you are more or less dismissed from the doctors after that. Hopefully things will start to get easier for you soon, it is of some comfort we are all in the same boat. Gloria, shame we dont all live closer, we have a cross trainer for fitness, would be great to open a gym with everyone. Am impressed with you and Claire with your new found fitness and healthy eating. I havent really got back into the fitness thing yet, keep using labs as an excuse, do enjoy walking. Sometimes i borrow my sisters little dog just to go for a nice long stroll! He loves it. the girls have a trampoline in the garden, i used to go on it before all this, not a pretty sight i can assure you, just couldnt imagine my head coping with it now. Does your therapist more or less advise you to do things that really bring the dizzies on. Know what you mean about some VRT movements not making me dizzy anymore. Anything that used to involve my head looking upwards used to send me dizzy, now i can manage this easier. At least i can see the cobwebs on the ceiling now! When i was unable to look up, cobwebbing was not done until my daughter wondered what seemed to be a washing line in her bedroom and was in fact a very large cobweb that i hadnt noticed! The shame of it!!! Good job Kim and Aggie not been round. Hoping your migraines are under control, not a nice thing to have with this. I too have a stash of handbags hidden away from hubby. After giving up work i sold about 10 of my work type handbags on e bay, and felt had some room under the bed, slowly new bags seem to have crept back under!! I am an absolute handbag addict! Claire, the feeling of what you describe as head rush is familiar, it is a weird sensation, glad your vertigo has gone, i had that in my first month, the scariest thing ever, that is my ultimate dread for that to return. Sounds like you are going to have a good half term. So nice to catch up with old friends, the sort of friend you havent seen for a while but when you do see them there is no awkwardness and that you just feel relaxed with. Have a lovely lunch out on Sunday with hubby and dont worry about those WW points!! To Binx, Jemma, Ashley and all lab sufferers, enjoy the rest of the weekend and hope it is symptom free for you all, if only!! Love Wendy XXX |
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Today is a good day, although I have been to tired to do much!!! I work only eight hours a month right now and worked today. It is good exersize and my daughter helps me. I couldn't imagine working more then a couple hours here and there. I hope that will remedy soon!! Don't feel as yucky today and that is wonderful. I have good days and I need to really focus on those. I get really caught up on the bad days while I'm living them. I'm working on positive!! I have applied to grad school and am really hoping they choose me!!! It has kept me busy for a good month! It's good to be busy. Gloria, I have tried valerian for sleep and have found in that respect it is not effective. I have not tried it for anxiety. I don't have side effects with my med I take now and that is a huge relief!!! I just don't want to have to take it every single day anymore. I'd like to put it away for the bad anxiety days like before. I have used the med for 12 years. I take a low dose and it just happens to help the vertigo-like symptoms. I have always wanted to travel to England. My daughter and I have a plan to after she graduates from college(a good six years from now). It would be lovely. I don't mind the rain. I live in Montana and the saying is, "Don't like the weather? Wait five minutes". It is an accurate saying! Binx,I have trouble with whole body rotation and maybe the trampoline would be just the thing for me!! Some flips and spins. Good ol' gymnastics from my youth! I really hope you get it beat. I am ending week 13 right now, I hope you're done by then!! Some people really are. 13 weeks is nothing compared to most on this site. I now understand the Dr's pushing and guidelines are very unrealistic and patience it key with this. It fits no mold and and cannot be mapped out. One day at a time. Lovely weekend to all, B =) |
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Jessica i'm glad to see that you are better it helps alot :) update- yesterday was good i was dizzy for about 4 hours but other than that i had a good time with my friends. today i feel kinda off, its the weather i belive. i have been doing good but i know that there is still going to be those day when everything is off. progress update first 3 months- 6 to 7 days of the week dizzy 4 months 5-6 days dizzy out of the week 5 months 4-5 days out of the week 6 months 3-4 days out of the week dizzy some weeks better than others but i'm doing pretty darn good on improvement. It still will mess with my body such as head pains, jitteryness, blurred vision, insomnia, feeling of going crazy, body pains, and ECT. i just got over a cold so that kinda set me back with the sore muscels, and a couple of swollen lymph nodes. i'm kinda paying the price for trying to push a ford bronco out of a ditch last week with a cold but it gave the body a good workout lol:p i'll keep up on the 411 have a awesome last couple months of winter, i hope everyone is improving, and feeling good!!! :D you can add me on facebook SeanE.Sullivan@yahoo.com |
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Hello All, just had a big catch up of all your posts, nice to hear all of your positive attitudes, especially you binx, bring that positivity this way because I feel I am in need of it at the minute. Well after being so good for quite a few weeks that blooming snake has caught me. I had a vertigo spin last Sunday and since then have been quite off balance and woozy headed. Worst day was Thursday, fell over twice in Tesco, not right over, got caught the first time and the second managed to grab the trolley. My head was just all over the place. I have decided to get back to the gym. It seemed to help me no end before so I am hoping it will be beneficial again. I am also going to restart the VRT tomorrow. My thinking is that because I was doing so well I stopped everything and that is why I have had the decline. So onwards and upwards .. Gloria - Claire and everyone else here's hoping its and upward week for all of us. Take care Love to all Shirley xx |
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Hello everyone, Just a link to a few videos i found on youtube. For those that have suffered worry, anxiety and panic as a nasty by-product of their time with labs give them a check. They are not too heavy and there's around 20ish vids in series - all of which can be accessed for free. As indicated earlier they cover a range of subjects which any labs (or similar) sufferer may find useful / beneficial. Just follow this link to the first one - then select the tab above the vid screen to show all other vids by the same user. http://www.youtube.com/watchv=cJGEoE_omrY&featurerelated You will need to copy / paste the above link into your tool bar and enter. If you close your eyes and just listen the persons voice it's so relaxing - i nearly nodded off !! Although quite basic they are delivering a mild form of CBT - which anyone with labs (or some other vestibule type disorders) may find extreamly useful / beneficial. I find the anxiety i have suffered with labs - just amplified the head / swirl symptoms even more. The anxiety and panic just loves layering itself over the top of a mushy head = it just loves it !! So be gone !!! After giving them all a run through - i now find there's only a couple i keep coming back to. Just like the VRT is doing some brain re-training - so is this. My little bit of self CBT. Shirley: Give them a run through - sit back and relax (un-disturbed) and listen to the info / persons voice. Guaranteed to help get you through that next trip to TESCO. If they don't - i will come and do the shopping for you next week myself. Although not directly aimed at labs sufferers the techniques can be applied in exactly the same way to help you ignore / alieviate some of your symptoms. Do you think your symptom trigger in the supermarket is the general environment ?? - or is it the fluorecent lighting ?? My worst trigger - is the lighting. The fluo lighting still makes me feel like my heads twisting off, vision goes all jittery / wavy and also feel i'm being pushed to the floor (i feel heavy in the legs / head). Even in a small newsagents with 1 fluo light my head can start to go - due to sensitivity to the flicker - which normally (if everything was working properly) you wouldn't detect. Just glad i ain't got any fluo's in my kitchen at home - they would need to come out - or stay off for the duration. Take care everyone. I am now going to relax to a re-run of one of the vids outlined above. Eyes closed BINX - listen to the voice - listen to the voice .............. BINX1965 |
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Hey guys Just a quick one today. Well as I mentioned in my earlier post, I started to feel really rotten after doing quite well since the new year. It turns out I have caught another viral infection that has infected my ears and throat! To be honest I was kind of relieved as I was worried I was having another relapse! I know it will set me back again as it did when I had a cold in December but I'm hoping I can get back to were I was within a few weeks. I'm supposed to start my vrt therapy on Thursday so I hope I'm well enough for that. I was also supposed to start my phased return to work in a couple of weeks but work don't think I am strong enough and to be honest they are probably right. I just want my old life back! I want to work 12 hour days again, have a stressful work load, study, go on holiday, socialise with friends!! When will I be able to do all of these things normally again? Or will it never happen? Sorry for the negativity, I'm just sick of praying for normality and I don't want to see another year pass me by and I've achieved nothing in it. Take care everyone Ashley xx |
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Hey guys Just a quick one today. Well as I mentioned in my earlier post, I started to feel really rotten after doing quite well since the new year. It turns out I have caught another viral infection that has infected my ears and throat! To be honest I was kind of relieved as I was worried I was having another relapse! I know it will set me back again as it did when I had a cold in December but I'm hoping I can get back to were I was within a few weeks. I'm supposed to start my vrt therapy on Thursday so I hope I'm well enough for that. I was also supposed to start my phased return to work in a couple of weeks but work don't think I am strong enough and to be honest they are probably right. I just want my old life back! I want to work 12 hour days again, have a stressful work load, study, go on holiday, socialise with friends!! When will I be able to do all of these things normally again? Or will it never happen? Sorry for the negativity, I'm just sick of praying for normality and I don't want to see another year pass me by and I've achieved nothing in it. Take care everyone Ashley xx |
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Hi everyone, just a quick response to Ashley, Hi Ashley, You have such a right to feel negative at the moment, to be struck down by another viral infection is cruel. I reckon this labs thing must weaken our immune system. I really feel your frustration for you. At 24 you should be having the time of your life. I agree with your comment you would love a stressful day at work etc. I really wish for that, to just come home and moan about work no matter how bad or tired you were, is so much better than what we have, yet others must think and have said to me how lucky i am to be at home, even though you are not well. If only they knew our 24/7 misery. You have achieved alot in a year, you must be doing more than you used to, and i pray for you in a years time, this will be gone for you, you keep strong and positive. I think i struggle with the frustration of this illness more than the symptoms itself as it is so unpredictable. Im sure after this is over we will be better people for it. Hope you are well enough for your VRT on Thurs. Really think hard about going back to work at the moment, try and build yourself back up after this relapse. Love and hugs to you and all the gang! WendyX |
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Hi, all. I haven't posted in a while, just been lurking again. I had a couple really bad weeks at the end of Jan, mostly head pressure and background dizzies, then boom, almost totally normal! For about a week. The last couple of days I've had low grade dizzies back, but I have been really over doing it on bathroom repair and minor remodelling. I'm fixing wall problems and minor things like that, and I've been going up and down literal ladder and wearing myself out. Ironically, it doesn't necessarily help me sleep. The odd thing I've noticed, is the anxiety is really totally gone, so I really do believe it has a physical root in the nerve damage and is certainly not just in our heads! I became for a while, inexplicably uneasy about even going out to the mailbox. I knew rationally how ridiculous and without cause that was and I went anyway, but there it was. I just knew I couldn't give in to that and I didn't. I'm sure no longer waking up in the morning, assessing how I feel, and going " Oh, not again??" I know my faith has gotten me through. I have been hanging onto God's promises of healing and of comfort, and I love the one where He says that He has plans for our future, to prosper and not to harm. The hot flashes, too are better. I'm still not sure if that was part of this or part of "that other thing", but the herbs I've been taking do help. I can tell if I slack off of them. St. John's Wort , Black Cohosh and cinnamon, a B complex and a multivitamin. All in all, I am definitely (knock on wood) nearly rid of this thing, I think, after 6 and a half months. I never would have believed I'd start my 50th year under the shadow of something like this! They (whoever they are) say not to take your health for granted and I know what is meant by that, but honestly, you have to get to the point where you don't just dwell on how you're feeling all the time, and how it affects what you do. Ashley, I know what you mean. You should be able to just go and do and not have to worry about how you're gonna feel the next day or week. You will get there! Look back on how you were even 3 months ago; I know I was still holding on to the walls walking around in my house. I'll tell you something else I've realized for myself, at least. I have to just relax about the stuff I'm not getting done that I planned and couldn't do because this stupid disease stole 6 months from me. You can't think that way because it will stress you out. You will get the things done you wanted to do, you will achieve whatever you go for. Just maybe not today. And probably not from a trampoline. Sean: the sleep thing. Oh, yeah. I had that bad in the beginning; I'd go to sleep and it felt different, then I'd just kind of phase into wakefulness two hours later. It felt like coming out of anesthesia, not waking from sleep. Now it's not as intense, but I wake still tired but not sleepy. I just get up and read or watch TV a bit, or sometimes I sleep on the couch so I don't disturb my husband with my tossing. Poor guy. He has been great through this. B: yeah,I've had the "poor mommy" thing. Oh, man I hate the brain not functioning! My family will tell me it never functioned that well before, har de har har. Anyway, to all- keep your heads up (literally, it helps with compensation XD)and remember, this thing isn't like a cold or flu where you wake up one morning and say, gee, I feel great, but you will have more mornings where that happens until it becomes every morning. So there. |
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Hello everyone, For some reason I just had a day somewhere between 90 - 95%. What's that all about then ?? Come back labs - I miss you like an old friend !!!! - you're still lurking somewhere ready to 'jump out' and suprise me - perhaps tomorrow eh !!! Until then i'll live the dream. I have ejected all prescription pills and now replaced them with this horrible mess of a bedtime drink for the last 2 nights. 1 pint of gatorade (for energy boost)- into which I insert the following; - 2ml of liquid st john's wart (for residual anxiety) - 1 giant disolvable max strength vit c tablet (for immunity boost) - 2 crushed 30mg ginkgo biloba tabs (for better blood flow brain / head / ears). Helping to wash down the 2 max strength garlic capsules (for circulation boost / anti inflamatory / anti bacterial) taken separately - as you dont really want to break these open. May cut back on the gatorade by a third as the week goes on and replace this with some cranberry juice (for anti bacterial / beneficial for the plumbing) The overall flavour is orange / fruity - so nothing nasty - and certainly ALOT better on the brain / body than some of the legal NHS 'crack house' meds i have consumed over the previous 8 weeks. Will let you know how i get on with the magic potion. It hasn't messed with my constitution as yet - so i'm going to give it a week or so at full throttle. Gloria: the valium can stay over in the corner 'smiling' at me - for the time being at least. Still working at the self VRT / CBT. I posted some links and stuff on this - but they seem to have fallen into a black hole somewhere. Saw my GP this morning - clueless - can't fully relate to the symptoms associated with inner ear disorders - keeps focussing on everything separately (ear pain / headaches / panic / anxiety / blurry eyes / neck pain / fatigue / vertigo / the swirls / sweating / night sweats / flushing / swollen glands / cognitive issues / feeling like you are dying etc etc etc etc. He just looks totally confused by it all and the mixture. I wouldn't have been surprised if he had given me a script for viagra - he's that far off the pace / subject / issues and how to provide any beneficial help / support. Still awaiting my next ENT app etc. Hoping your week gets better and better, BINX1965 |
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Hi, I'm a terrible sleeper and have been for years. When I first got sick I slept solid through the night. It was wierd. About three weeks in I started to go back to not sleeping much. I found that this nasty thief doesn't like to be unrested and rears it ugly head. I have had to spend weeks getting used to not sleeping while sick. It is better now, but when I barely sleep at all I have a less then fabulous day. I cannot identify how it has effected my sleep. I do have hot flashes since I have been sick. I am only 34, so it has to be the illness. If I get hot I almost can't stand it and feel sick to my stomach. That has improved, but it is still very unenjoyable. In the begining I couldn't take bubble baths due to the movement of the water and the heat. Those are wierd things. Now I look back and see that things have improved in important ways, but I still feel so handicapped. I can't imagine having this for a year or more. Ashley, you have every right to be negative from time to time. You have been suffering a very long time and are too young to be laid up like this. I hope you are well very soon and back to 12 hours days!! Ellen, it is exciting that you are on the mend!! You give good hope! Wendy, how long have you been suffering? You have a good grasp of the ups and downs. Shirley, so sorry you feel down two times!! The relapses feel like the end of the world because it feels like we've gone backwards and are starting over. I was pretty good before Christmas, but relapsed after and don't feel quite as well as I did then. I fear feeling worse. Every morning I hope to be done! I know we all do. Does it really happen that way? It is very difficult to stay positive. It is a nasty thief in that it has stolen our normal selves and hold them hostage. I wish I could just pay the ransom!!! Enough from me. Have a great day. B |
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Hello Brad .......... are you out there ? Quick question you might know the answer to. Could you contract Lymes disease from a blood transfusion - on recieving blood donated from an infected person ? I don't know if blood is treated in any way (to remove bacteria) to stop this happening. I guess it's not - is it ? or does the bacteria die when the blood is refrigirated at a low temp ? Let me have your thoughts ? I am looking to force my doc into some lyme tests soon - and need some ammo. Also - I have been told that if you have a heavy bacterial load in your body - you can test this by taking a high dose of ginseng. Ginseng amongst it's other properties triggers the bodies killer t-cells to fight alien bacteria. If you are ill (sickness / diarrhea) within 12 hours of consuming a good dose of ginseng this could indicate towards a heavy bacterial loading in the body. The illness being triggered via the t-cells attacking the bacteria and causing a die off scenario. This being similar to a herxheimer reaction (but not as bad in duration / symptoms) - seen when taking antibiotics for an chronic infection - with heavy bacterial loading - the 'die off' effect. What was described to me though was (a short duration) violent sickness / diarrhea as the toxins / poisons from a mini 'die off' (triggered by the ginseng dose) are expelled from the body. This being self limiting if only confined to a single high dose of ginseng. Garlic is obviously anti-bacterial - but not as instantly potent as the ginseng - so no dramatic effects are observed. Then again - it could just be a bad reaction to the ginseng i guess. Who knows ? Any help / thoughts always greatly appreciated. BINX1965 |
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Hi all, Well, my hubby has given up on our computer. He and it were off early today to the Apple store! Just hope they can repair it - cannot afford a new one! Anyway, great to hear good news from Ellen - long may your improvement continue. Ash - one thing on top of another. I'm so sorry for you. I felt a bit like that last year - each bit of my body seemed to develop something wrong with it. My doctor, I'm sure just thinks I'm a hypochondriac now. Thing is, it is just enough to cope with labs and all it's added extras without having to deal with other health probs. Try to stay positive - all of this will pass and you will get better. Hugs to you oxox. B - my relapse after Christmas is still dragging it's feet. You do think it is all going backwards again and not forwards. I haven't felt 'normal' since the beginning of all this, but of course know I have improved. Difficult to tell though in between all the little blips and big blips!! You just have to look at the whole picture from the beginning to see what you do now and to what you could do then - for me there is quite a difference. Sleep, too, has been a big issue with me as well as the sweats etc - although they have calmed down a lot lately. It is all a very slow process, but we will all get there. I have to be positive otherwise I would panic myself into a real mess to think I am stuck like this for the rest of my life. It's trying to find the patience to deal with everything for such a long drawn out illness. As I've said previously on here a friend of my neighbour's had this some years ago. It diminished - symptoms getting less and less severe over a course of about 2-3 years for her. She was chronic for about a year and half then the balance of her feeling not good to feeling fine changed. She felt good most of the time with background symptoms which faded. She's great now. Binx - I got all my blood tests back - testing for inflammation of the body (ME ), lyme, thyroid etc - all clear! I think I have reached the stage where all the nasties have been ruled out and I have double checked on a lot of things to make sure. To me now it is a case of have patience, deal with the issues as I have been - VRT etc - take my vitamins and minerals (B vits especially) exercise and relax daily. I have followed up on all leads - including candida fungus etc - have taken tablets for all those things. No difference really. So it is good old labs with all its added features!! It is only natural to want to find a specific reason for all the oddities this thing throws at us - and I think it is good to check - just in case. BTW your feeling normal, I think is a great sign - a quick recovery for you Binx let's hope. Keep your positive spirit going - keeps us going too! Shirley - I was only thinking of you the other day. I'm sorry to hear you have slipped back. Know what you mean about how you stop doing everything when you feel better! But that is how life should be - carrying on without having to think you have got to walk, exercise, do vrt etc! So, like you Shirley I'm on a new fitness regime, vrt religiously until I feel brighter again, then no doubt I'll stop!! It is all SO exhausting. I hope for warmer sunnier weather too - that made such a difference to me last year. Keep strong Shirley - we will boot this thing totally out of our lives - for good! Wendy/Jemma/Claire (relaxation tape worked - fell asleep and woke myself up snoring!!). Hope you are all having good times. Love and hugs, Gloria xx |
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Hello everyone, Gloria: You'll like this one - particularly as over time you have learned to appreciate the snakes and ladders etc. Monday: I reported a day of 90 - 95% normality. As such - i threw myself about a bit - lots of walking (must have covered 6 miles over the day) popped in and saw a few friends - did some VRT stuff etc. Apart from some mild vertigo in a busy shopping area - nothing else reared it's head. Felt good all day. Would have done a little driving if I could have fitted it in. Tuesday: Bang - back down to 55% felt drained upon waking - tinnitus - neck hurt - felt wobbly - bad headache. Complete opposite of previous day. Spent most of day lying on bed - bit of TV etc. Trawled internet searching for alternative diagnosis - as everyone does - and hence my lyme post to Brad. Wednesday (today): Opened eyes - felt good. Not as good as monday - but up at 80% ish. All in all - what a horrible ailment !!! I do know from numerous posts on here - that it is very usual for a bad day to follow a very good day. I have obviously pushed the brain - beyond it's current processing capabilities and it's suffering with overload fatigue. Take care everyone, BINX1965
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Hi all Well as usual it is up and down for everyone by the sounds of it. I am the same. Still stuck in a blip, not quite as tired as last week but it was that time of the month. Still woozy/swirly headed but trying to fight on through and keep doing what I can. It is so odd how one day you can think 'yes I have definitely improved' then another day you feel like you did a few months into this and you question if you have really improved much at all. B - all that endless qestioning you go through internally is so normal with this and I know I have thought so many times, will I ever be normal again. Guess we just have to keep believing we will. Ellen so good you feel you are nearly done with this. Reminds me of Melissa who used to post on here. She started to see big improvements after 6 months and was totally over it within a year. Unfortunately some of us are a bit slower going than that :-( hope for you it is nearly over! Wendy and Gloria - hope you both see some brighter days very soon. With you on the handbag front. I too am addicted. Love Lulu Guinness handbags - got about 5 of those! Not cheap though. I really must cut down on my spending especially now I'm not working. The credit card bill is very ugly! Ash - not sure if I will go back to work. This thing has taught me not to jump ahead too much with plans for my life. Kind of take each day as it comes if possible. If I could plan for this then I would have been over it a long time ago, unfortunately I think that only leads to disappointment because this thing does not play by the normal rules of illness. My job as a solicitor did not really lend itself to working part time as I found I had to do a full time workload on part time hours and pay. The stress levels ramp up and so do the symptoms and the debilitating fatigue. I am sure if someone saw me they would think 'what's wrong with her, she can work' but they dont know how much any exertion or stress affects you with this. Even at home, I have to take regular rests lying down throughout the day. Shirley nice to hear from you, hope you are soon feeling on the up. Claire, how are you at the moment, over your post xmas blip? Is it half term soon? I keep wanting to plan a short break away this spring but with all the setbacks I just dont want to commit to anything. It would be nice to be able to know if and when a better phase might appear so I can avoid wasting at a time when I feel rotten. Anyway take care everyone, onwards and upwards!! Jemma xxx
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Hello everyone, Just a quick update, been doing VRT full on for a week now have seen some improvements in my blip although not saying VRT has helped but it certainly hasnt hindered!! Maybe my blip is fading slightly the cold has gone so thats a help kets just see how the 'hormones' affect things this month. So on the whole a little more positive. Had 'a moment' on Sunday in a restaraunt for hubbys Bday meal (v dizzy day) thought I was going to have a panic attack but managed to control it & was really pleased with my self as for once i felt in control of this thing which gives me more confidence to conquer new territories! Gloria hope you are enjoying the relaxation cd I havent used it for ages but thats a good thing as it means I havent neede it. This time last year I was at Euro Disney when 'the virus' was full on I cant believe its a year on from then but at least there has been a lot more improvement so maybe another 6 months & this thing will be completely gone!! Jemma hope you are coping with your blip :( funny (actually not funny at all!!) how we have all slipped down the snake since Christmas I think the weather doesnt help we need some nice bright spring days to lift things. I have booked lots of things up for the coming year mainly becausr last year was such a right off. I am of the attitude now that I will do everything I want to & if I feel a little off then i will deal with it luckily understanding friends & family help with that. So half term next week my cousin & children coming for a few days then i am off to Sussex to stay with my oldest friend who I hardly saw last year so lots of catching up to do!! Binx you have discovered the game of 'Snakes & Ladders' it'n actually not a very good game & I'm looking forward to the Finish!!! Always 1 step forward & 2 back so it just takes us all a little longer than anyone else to get to our destination of good health, but we WILL get there eventually. Shirley/Wendy/Ash & everyone else hope you are all okay Claire xx |
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Hello everyone out there. Thank you, thank you,thank you all sooooo much, at last I have found someone who understands what this weird and crazy illness feels like, you are my saviours as even my GP doesnt really seem to understand the full impact that this has had upon my life. I went to bed as 'me' one night and woke at 4am basically disabled by this illness. Its been almost 3 months now and I have no idea when I will be able to return to my job and my normal life. I am despairing, does anybody ever fully recover? Never in my life time have I taken so much sick leave from work,I am never off normally. It is reassuring to find this website. |
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Hi everyone,Thank you, thank you, thank you soooo much, at last I have found someone who understands this weird,horrid and very debilitating illness, I have a feeling that my GP certainly doesnt. I went to bed one evening 3 months ago as 'me' and awoke at 4am the next day as, basically, a disabled person. I never took this long off work even when I gave birth!!! In fact I rarely take any time off work at all. I am despairing as everyone I speak to has never heard of Labs. This website has been so reassuring!! Thank you so much every one and I am so sorry that you are all suffering too. Sharon (uk) |
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Hello Sharon, (and welcome) You sound like you are (indeed) in the right place. I sense some relief ! I too found this site to be a saviour in many respects - you are certainly not alone. There are many regular visitors to these pages - of whom you will be able to ask questions and get advice. I am only 9 weeks into this thing myself - so am pretty much limited in overall knowledge - but the many veterans who visit will certainly be able to help with any questions you might have about this malody. Certainly from my experience there's a lot more combined knowledge on here - than can be found within most GP's consulting rooms. Post any questions you might have - you will always get a response. Take care, BINX1965 (Nottingham UK) |
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Hello BINX1965, Thank you for responding to my message,interestingly I am also from Nottingham. Its fab to know there are people out there who really know what this is like. My family, friends,neighbours,work colleagues and boss have all been wonderful, very patient but non of them have ever heard of Labs and they are all in disbelief that I havent recovered yet and I can't help sensing that they all share my utter frustration and want to say 'pull yourself together and get over it!' When I first got poorly the docs said 'it'll take a couple of weeks before you get better', a couple of weeks went by and I was still bed ridden, unable to move without my eyes zooming from side to side,the room spinning and then being sick, it was terrifying,not only were the symptoms terrifying, the fact that I had gone from being very independant,working full time in a demanding and high stress job to suddenly being disabled and dependant upon my family for my most basic needs, even toilet duties, was equally terrifying!!! Although I do have a certain amount of independence back I am still along way from normal and have spent many days despairing in a panic that maybe I will never get back, completly, to normal. I feel safe at home, going out is pretty daunting because of my wobbley dizzies, I havent driven since the end of November and the thought of it petrifies me as I am so disorientated and off balance all the time. How are you doing, what sort of symptoms do you still have now you're 9 weeks into Labs? |
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Hello Sharon, Sorry you had to search for this site, but Binx is right it is a real 'life saver' I had that wake up diferent feeling 1 year ago (but dont focus on that!!) I found very little help from GP's & even the 'specialists' are slightly baffled by it the one person who has really helped & understood me is my VRT therapist, VRT is Vestibular Rehabilitation Therapy (google it) basically your inner ear/balance system has been damaged by a poss virus/illness etc & your brain has to be retrained to compensate for the imbalance. I was told that if 100 people get this then 80 will recover within a few weeks/months & 20 will have it more long term 1 yr +. I had an MRI scan & loads of testing at the beginning, went privately too! All came bck clear but tests showed 18% damage in my right balance organ. Maybe push a little more with your GP for a ENT referral & maybe that could lead you to VRT. I hope you are lucky & feel better before the appointment. Stay calm & try to remember you will get better it just takes a while as the balance system is a very delicate organ. any questions you have just post on here there will always be someone who has an answer for you. Take Care Claire x |
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Thank you so much Claire for your advise, at my last Docs appt I asked to be refered to a specialist who might help me recover to a point whereby I can at least return to work and get a little independence back (do my own shopping etc), my Docs response was that its early days yet! So I continue to struggle on. I've looked on the internet at some VRT stuff and defo think it would help, personally if someone told me that jumping off the roof of my house would cure me I'd have the ladders out right now, I really am prepared to try anything!!! It has been so reassuring to know there are others out there like me and I'm not going bonkers. I do worry alot about what others may be thinking regarding the length of this illness,there really is a guilt attached especially when you're normally the person who looks after everyone else and generally soldiers on. It's horrid to not be normal any more and to lose social life,work life,every part of life really and to not know when this thing will go away. Hope this doesn't sound selfish but I,m glad I,m no longer alone!! |
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Hi, Sharon, I'm sorry you have had to find this site too! I'm also new on here and just 14 in a half weekes into this illness. This is one scary experience!! It is tricky with no clear path. My ENT told me "no less then two weeks and not longer then three months". I believe he just made that up. As Claire said, no doctor seems to really know. They pass you around until they don't know what else to do with you. I have come across two people that have recovered in just six weeks, so there is definately hope that it doesn't have to be years. The folks on this site are just wonderful. They know how unpredictable this can be and have all experienced it to one degree or another. The best part for me is to discover that there is no one symptom for labs. It is both weird and unpleasant. I hope you find some comfort in the experiences of others here, as I know I have. Best of luck, B (Montana, US) |
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Hi all, Welcome Sharon - you are amongst friends here who all can totally know what you are going through. I've had it now for about 20 months, but, very quickly before you panic - not all of that is like you are at the beginning. You have seen our analogy of a game of snakes and ladders - up a ladder doing well, then back down a snake to feeling yuk. Although you can't see it at the time as each blip is still a rotten thing to experience, you do improve and improve. At the beginning I was so ill with a viral chest infection as well as the dizziness I thought I would never get out of my bed - that took me a couple of months alone, but now I'm up and around living my life pretty much. Not at the full speed that I used to I have to say and I did give up my part time job. That said, in a couple of weeks I am resuming 2 afternoons a week at my friends hairdressing salon as a receptionist. I need to get back into a routine of something. It is not a job I am used to or have done before, but it is a start. Keep in touch here as everyone supports each other - and for me that has been my total saviour. Binx - so sorry you went back down that old snake - hopefully going up a ladder now though! We all do it - you feel better and then go out and do a load of stuff, then suffer for it the next day. Are you still making your 'brew' and has it helped? That would have me in the bathroom for a week!!! Jemma - we are stuck in our blips aren't we? Although yesterday and today have been a bit brighter and I don't feel so fuzzy headed - but that could be short lived. Like you, am on a spending diet - especially after Christmas. That's what makes this time of year so dull. Weather yuk and no retail therapy to help me along LOL!!!!! How's your nephew doing and are you doing lots of auntie baby-sitting?? My god-daughter is pregnant and all is fine this time. Due in October. She has asked me if I would be interested in looking after the little one when she returns to work. NO! NO! NO! I love kids, but I think that would send my head right back to the beginning and the exhaustion of looking after a young baby everyday is a non-starter. Is that harsh of me? Claire - glad you are feeling a bit brighter. That attack when you were out with your hubby sounds horrible. I had that a few weeks back when my old auntie was here for lunch. My eyes must have glazed over as I was so trying to concentrate on her and not collapse into a heap. It did gradually pass and I do feel quite proud that I managed it. That would not have been the case a year ago. So improvement. Your CD is great! I have listened to it three days in a row now and within minutes I'm asleep and can hear myself snoring! Not pretty! The exercises are a challenge as well and did make me feel worse too. So here's hoping. As you say though, they help, but I don't think they cure. Have a lovely time with your family and when you go visiting - hope you feel great. (Love your new picture of you and hubby!!) B- hope you are seeing brighter days. How's the weather in Montana and do you find it affects you? UK weather, presently, is really dull and overcast, which does affect my head although there has been some bright sunny spring-like spells - so here's hoping we are coming out of our winter which I always hate! Ash - thinking of you and hoping you are improving. Am writing this post on our newly-repaired computer - well total new hard drive apparently. So hoping this will last now! Well going to do some VRT - and hoping have entered a better phase which I was in before Christmas. Am going to make this ladder snake-proof this time LOL!!!! Love and hugs to all, Gloria xx |
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Hi all, I haven't posted in some time now. I just read up on a few posts. Binx thanks for making everyone laugh. You have a great attitude in how you face this demon. Keeping it light will help you greatly. I am recovered at this point. I hate even writing that down because I am superstitious and afraid to even say it! I do get the occasional woozy light head now and again. Usually when it is going to rain or snow. I'm like a Native American. I feel it the minute the storm systems rolls in. I also feel it sometimes right before my monthlies (love that term ). All in all I am back to normal living. Like all of you on here, I recovered very slowly. It was an up and down (snakes and ladders) recovery. I would have 7 great days and then 7 really bad ones. This lasted a good year. This May it will be two years ago that I got labs. Binx my labs onset came after I pulled a muscle in my neck. I went to a chiropractor and after he adjusted my neck, I was never the same. That night the vertigo hit full on. So you have something when you are exploring your neck problems and linking it to your labs. As for Lyme, not sure how I stand on that one. You sound like you have classic labs. The car accident that you had may have been the start of it. Some people have previous neck injuries and then years later get labs. Jemma, Shirley, Claire, Gloria!!!! How are all you stong and wonderful ladies? I miss you!!! Keep the faith everyone!!! Keep the faith! :) Melissa |
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Hello Sharon, sorry to hear you have been suffering with this illness, as you can see there are a few of us. I have had this for just over a year now, but like a few others on here does not mean to say this is your destiny. The first few months are deff the the worst so hopefully in time you will see a gradual recovery, can be slow so patience is everything with this illnes. A year on i still have wobbly days, a feeling of unbalance, ear pain, tinitus and neck ache but do have some good days so just waiting for the day when am 100% better like all of us on here. It took me a while to get back to the driving. Dont rush it, you know when you are ready. They say that when you can walk without feeling too unbalanced then you are ready to drive. Just do short journeys around the block to begin with with someone next to you if you can. Such basic things we have done for our adult lives and we are having to learn to do them all again! Like you i feel that others just cant belief that i am still suffering with this, there is so little knowledge of labs about. Gloria, good to hear computer has been fixed. Good news about the receptionist job, a nice way of gently easing you back to work and hopefully a free hairdo to! Claire, hope your half term has got of to a good start. Enjoy time with your old friend, nothing like a good natter. Hope you are heading upwards and not down the ladder. Jemma, i agree with your last post. Some days i feel so confident that i am getting a grip of this illness and a couple of days later feel like have gone backwards again the frustration is the worst part sometimes. I am jealous of your Lulu Guinness handbag collection. Do you buy yours from QVC or do you go into the store? They are lovely bags, so classic in design and expensive! Hope you soon move out of your blip. Ashley, how are you doing since your last post, know it was getting you down, hope things have improved for you. B, nice to hear from you, like you i found that the doctors have little understanding of this illness. It is mainly through this site and through my own reserch that i have found out more about the illness. Hope you are getting plenty of support you said your daughter had been good. Binx, has the VRT been helping you do you think. Are you back to work yet, so hard to cope with this and working. I survived my meal with my old work friends on Friday, and coped really well with it. At times it was really loud but we sat there for 3 hours just nattering and catching up it was lovely. When i got home felt quite flat and low because i realised what i am missing out on all the office politics etc. Oh well i aim to be rid of this by the 2 year mark and to be able to go back to work, thats the plan anyway!! Hope you all enjoy the rest of the weekend, halfterm with the girls, feet wont touch the ground this week, but at least dont have to do the school run in the mornings. Love from Wendy XXX |
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Hello everyone, I see a flurry of activity on here. Melissa: I too have become a natural barometer to the weather. Even before the curtains are open - I can now instantly predict what conditions are like outside - rain / shine / overcast / etc. My wife says I should now view this as a special gift. Thanks ! On the subject of the neck. My ENT has made a note of my neck issues and this is on the list for further investigation. Gloria: Yes a little slip down the snake - but now going back up. My youngster presented me with the gift of a cold he picked up from school - and I think I had that for a couple of days. My immune system that's been ploughed with a variety of suppliments shook it off in a couple of days - he still has it !! I am also off the night-time concoction - feel that a one week boost was enough - couldn't really tell if the effect was good or bad - but it didn't do any harm. You might be surprised to hear that 2 aspirin's at bedtime seems to work better than 'the brew' in alieviating residual symptoms - including light tension headaches / neckpain / tinnitus. Still not touched the valium - but it's always on standby - just in case ! Wendy: Yes still doing some VRT. Trying to walk a lot as well. I try to get out in the evenings when no one's around to watch me doing some of the VRT head movements - otherwise they might call the police reporting a mad-man on the loose. Not back at work yet - maybe in a couple of weeks. Will need to tolerence test the environment - as I am in a large open plan office building awash with fluorescent lighting. I guess once I can tolerate fully tesco's without any swirly head symptoms being triggered - I will be ok at work. Sharon: As we live so close - perhaps the same winter virus has knobbled us both ? I had my acute symptoms start in middle of Dec 10 (just as the snow was melting) - you can read the story several posts back. My guess is that I was going down hill the week prior to the acute bit as I was starting to feel severely fatigued and was having problems with neck pain - i guess because my balance mechanisms were starting to lose the battle to cope - also some ear symptoms. I live in Hucknall - just outside Nottingham and am a Senior Manager with one of the large Local Authorities. I have been off work since I was struck down in mid Dec 10. What are the major symptoms you are currently struggling with ??? My current outstanding (MAIN) symptoms are: The neck - the neck - the neck !! Tinnitus - comes and goes - worse in the morning. In fact - what I should say - is that lying down exacerbates it. Doesn't mind which ear or both - and likes to vary pitch now and then - so I don't get bored. General Balance - can feel off balance for a short period after getting out of bed in the morning - this subsides quickly - within a few mins of being upright. Possibly as the brain gets into gear and realises it needs to get my darn neck to do the basic compensating. Vertigo (the swirlies) - only brought on by certain triggers now - some fluorescent lighting arrangements in stores - busy places - anything that's very busy on the eyes - cross conversations with multiple persons for extended periods - lengthy telephone conversations - big screen TV for more than 20 mins and a few others. The typical stuff that sticks the brain into a sensory overload. Anxiety - some residual stuff still floating around. Feelings of being anxious KICK IN for no apparent reason as the sympathetic nervous system does it's own thing. I loathe this stuff - as I have no control over it. For someone who has never been anxious - this was / is a real bummer !! Fatigue - not major now - but still some morning stuff. Depends on how far I push the boat the previous day. Todays Rating 75% of normal. Currently awaiting next ENT appointment. Have a good (or better) week everyone, BINX1965 |
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Hey Sharp Blue Crew! It seems I have been following many of your postings for months now. In some of my worst moments, many of you have brought me a few rays of sunshine. There is something to be said about the relief you feel when you find out you are not alone in your illness. So Gloria, Claire, Jemma...and others of course...I really identify with each of you. I sorta get the giggles when I type this, because I feel a bit stalker-ish...reading for all these past months, yet not writing in. My hubby finally convinced me to do so, saying I might just be able to help someone like you guys have done for me. I am just over 1.5 years with vestibular neuritis. I would say I was really bad for the first 5-6 months. I finally started to notice improvement after the 6 months, but it has been and continues to be slow. As with most of you, I am loads better now than I was. I mean, there really is no comparison. I am pretty much functioning like a human again. But I too play the snakes and ladders game. So frustrating...just when you think you are finally kicking this thing, it rears its ugly head again. And, for me anyways, there is no consistency. No connecting of the dots. But I try my best to keep on...VRT, running, normal everyday things. I too had to quit my job sometime back. I was so heartbroken at the time...but looking back, I know it was the right decision. I worked in a high-stress environment, and feel that it was absolutely hindering my recovery. Thankfully, hubs has a decent job that allows for this. I do feel for those that struggle with this illness, plus have to keep working. Just cannot imagine that. I certainly get a good laugh from these posts though. We should have a contest to see whose medical specialist was the dumbest. Honest to pete, if there was anything to leave me speechless, it would be some of the doctors I have seen. And like you folks in the UK, we here in Canada too can go private. Lots of $$$ for nothing. All I got was the pleasure of meeting more dim-wits. Yay for me! Anyways...onwards and upwards eh? I am still getting over my latest blip. Here is to hoping my next good stretch is longer than the last. Hugs and thoughts to all you guys! Lucy xo |
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I think I'd rather have two broken legs. At least you know there is an end. Sometimes it really gets the best of me and I have a hard time getting pepped up. When I found this site three months ago I didn't post because I was horrified at the length you all have been sick. I though for sure that that wasn't going to be me, no way!! Well, I'm now at 14 weeks and starting to feel like it will not be gone soon. Who knows. YAY for Melissa!!! That is another happy ending!! Thank you so much for sharing!! Gloria, you are a trooper!! Sorry your computer has been giving you trouble, that too is disabling!! The weather usually effects me, but this latest batch of rain, snow, rain, snow :| has not been too bad on me. Maybe that is a good sign!! Maybe I too will look into a relaxation cd for sleep. I hope you are getting back to good. Sharon, don't worry what others are thinking, only worry about you and yours. I have found that worrying about others perception of my illness just causes more stress which in turn causes more symptoms. I hope you kick this soon. Not being able to work is the second most stressful part about this, at least it is for me. I have been lucky enough to always be able to drive. My poor daughter would be walking in the below zero weather and elements to and from school!!! It is weird how the effects of labs can differ so much! Wendy, is half term the break between the semesters of school? Or Like spring break? Are the girls your kids or friends? Will you be doing anything for the break? Claire, what was the test your dr gave you that showed the damage to your balance system? I hope you have a wonderful time with your friend. Laughter is great medicine!! My dr is "special" and would just like me out of his hair!! I don't know how drs in the UK behave, but in the US they are often full of themselves and spend little to no time with each patient. Should I stop with the ENT or get a referal to a Neuro? Has anyone had luck with a Neuro? UH OH, I seem to be a tad negative so I'd better be off!! Sorry all!! Have a great weekend and I hope someone else reports in healed!! B |
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Hi all my natural barometers, Back from Vanuatu. Still bouncing 24/7 but all is good. The plane trip was really bumping because of the cyclone in Queensland but I thought it was great, couldn't feel a thing just seemed normal to me. The locals thought I had been drinking karva because of the way I walk with the labs. Did notice one thing the more I walked on uneven surfaces (eg. beach and their poor excuse for roads) the better I felt, until the end of the day I feel in a heap. Just remember there a people out there who pay a fortune on booze or drugs to feel like we do. Just keep doing all your exercises and stay positive and all WELL BE GOOD. Love to all Aussie Donna PS Just had a negative. I have to go back to work tomorrow. Oh well xoxoxox |
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Hi all you fellow sufferers! Gloria I can completely relate to the snakes and ladders analogy you refer to, so very accurate! Think your new job of two afternoons a week is a brilliant idea, 'dip your toe in the water',try not to be tempted to do too much though, this thing has a habit of turning around and biting you on the bum just when you're thinking how much better you feel-snakes and ladders again! Mellisa I know what you mean about being superstitious, I have decided to stop saying things like 'I feel ok at the mo,' because two minutes later I'll fall over! Wendy So nice to read that you went out with your work mates and coped enough to actually have a good time.There's hope for us all yet then? It's horrid being away from work I can relate to how you feel in that respect, this thing is soooooo isolating. Thanks for the reassurance re- driving, I will defo take your advice about only doing small journeys first. B Thank you so much for your kind comments, 20th Feb,I know that what you're saying makes sense. Binx Such a pity you can't be a barometer for something abit more useful like next weeks winning lottery numbers, but hey ho at least you know when it's safe to hang out a line of washing! Like you I was at my worst mid Dec- the 10th to be precise, I had already been off work for two weeks with viral conjunctivitus (another illness I've never heard of and certainly never experienced before)- was so bad I ended up at QMC eye department-couldn't even open left eye, so swollen looked like I'd been beaten up by a gang of baseball bat wielding muggers! Neither QMC or my GP could help apart from give lubricating eye drops. I literally laid for two weeks with ice packs on my face-the pain was awful, my cheeks and nose were swollen too. When the Labs hit it was so sudden,so violent and so debilatating I thought it was a stroke. I have been so poorly with it there's no way I could currently return to my job, I too work for the LA as a manager in a special school and,like you, am rarely off. Fortunatly I am still being paid, but that won't last forever and somehow I have to try and get back- just the thought of it petrifies me to the point that I am crying now just typing this, how pathetic is that? I worry that functioning at work, when simple routine tasks like showering and hairwashing, are so difficult, will be impossible. I don't sleep well as I have to be propped up on my right side and any movement activates my severe room spin button and around it all goes leaving me feeling so ill I then can't sleep at all. I worry that I'll go back to work and either have an accident or have to go off sick again because the slightest thing exhausts me. My legs and feet ache constantly from trying to maintain adequate balance in order to keep me upright, does anyone else out there have this? Oh god Binx I am going on abit aren't I, so sorry!! I am very stressed about my career. I have to drive alot in my job to attend multi agency meetings and I haven't even sat in the driving seat of my car since November- PETRIFIED!!! So sorry you have constant tinitus, I only get occasional rushing sounds and loads of popping and crackling (abit like bonfire night but without the pyrotechnic display or hot dogs), do not envy you having to cope with 24/7 unwanted noise! Total nightmare! The fatigue, balance issues, anxiety and vertigo I can very much relate to, I am also 'down' alot,sort of despairing and worrying that I will never drive, shop for myself, walk properly or return to work again,very scarey! This website is a chuffing life saver! I feel so much more reassured. I can't understand why the Docs don't seem to have much insight into this illness, quite clearly there is a significant number of people who do not fit the pattern described by my GP, recover six weeks max, keep taking the betahystamine and you'll be fine. As 'B' said- two broken legs is preferable, at least you have a rough idea when you'll be well! I'm going to try the Ginko next and see how that goes, got to keep searching and maybe one day POW - cured! |
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Hello Sharon, Your symptoms seem a lot more dramatic than mine - although what i can say for sure is - that once anxiety / panic is in the mix (either real or triggered via the sympathetic nervous systems response to a miss-match of signals due to labs) things can feel a hell of a lot worse (symptom wise). It's a vicious circle - you don't know what's labs and what's anxiety related - there is certainly some cross over. The docs can't distinguish between the two either and the lines become blurred. They also become blurred for you as the sufferer ! My experience with the GP's has been good and bad since this all started - and i've seen them a lot ! As far as the labs goes - looks like we share a similar timeline - although if you look back at my entries i've had days now where i have felt 95% good - along with some slides down the snake to boot - usually following a very good day. I was real bad for the first 4 weeks. The best info / help / advice about labs (and the related conditions) i found via the threads / entries on this site - and for that i am eternally grateful to every user - past and present. So stick with it. We have certainly shared an employer at some stage - that's if we don't currently ? Either way - the employment issues are the same for us both - from a terms and conditions / sickness abs perspective. My LA's HQ is near T Bridge. If you feel like you want to talk - certainly around some of the employment stuff - drop me an e-mail to: fiskerton@yahoo.com - i will let you have my contact details. Hope you are feeling ALOT better very soon. BINX1965 |
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Hello Everyone, I was just thinking (as I reflect on my current health status) how medicine has moved on !! A BRIEF HISTORY OF MEDICINE I have an inner ear infection - 2000 BC - Here, eat this root. 1000 AD - That root is heathen, say this prayer. 1850 AD - That prayer is superstition, drink this potion. 1940 AD - That potion is snake oil, swallow this pill. 1980 AD - That pill has nasty side effects, take this antibiotic. 2011 AD - That antibiotic is ineffective. Here, try this root. Sound familiar?!!! Just give me the darn roots then !!!!!!!!!!!!! BINX1965
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I'm going for the POW cured thing!!!! I wish some Dr would get a grant and do some research on this. On another UK support site there is a reporter asking people with labs to contact her for an article. I think that is a definate step in the right direction!! Stay out of the flourescents everyone!! =) B |
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Hi all, Well today not as good as yesterday, but that's the way of our world eh?!! Lucy - great to read your post. Welcome. What part of lovely Canada are you from? Seems the medical profession are about the same though LOL!!! May I ask how you know yours is Vestibular Neuritis and not labs? I have a feeling mine is VN as my symptoms have abated but never really gone to make me feel almost normal like some report with labs. Would be interested to hear your story. Binx - love your post!! SO SO correct - what goes around comes around as they say! I'd take it all to feel totally free from labs! Binx, lovely of you to offer Sharon some help with her work situation. I used to work for the public sector too and they cannot dispense with you because you have been long term sick at the drop of a hat. Thankfully, I am at the stage in my life where I took voluntary redundancy in 06 and just had part-time work thereafter, which I did have to give up. For those with full-time jobs ,like yourself and others which the majority of us rely on it for financial stability, it is a huge pressure. DON'T be pressurised - your health is the key important thing in life. Sharon - you WILL get better and quite possibly be one of the ones who gets better much more quickly. If any consolation my muscles have ached all over my body and at present, like you, my legs and feet kill me as well as my neck and shoulders. My physio who I go to regularly to help undo some of this muscle spasm stuff, said in her opinion it is all compensatory. Certainly it is not due to over exertion like I am a cross country runner or anything like that!!!!!! This does get you down - big time - it is not shameful to request something like Amitriptyline from your doctor to help. This is one of the ones that doesn't interfere with your brain recompensating. Just 10mg a day helps enormously. I am not on it at present but have used it over the last year. On the driving side - strangely I found that driving was quite a relief as I felt so much better whilst driving. Just try it around side roads just to see how you get on and have someone with you. Aussie Donna - find some more uneven surfaces - sounds like your VRT exercise!!! I presume Vanuatu was a vacation? Sounded like you had a good time. Not sure I could have coped with that bumpy flight. Great to hear from you and your always cheerful positive vibe. B - you sound a bit down at the moment too (understandable of course). It does get you that way because every day it is one symptom or another and so relentless. Not sure about what to advise with going to a neuro. I have found that the only positive thing out of seeing consultants is to have the scans etc to rule out nasties. For me I have seen a neuro and am due to see another because my added problem of being a migraine sufferer. Although it is not Migraine Associated Vertigo, but it is hampering my recompensation. So from that point of view it may be good to rule out other things. Do you suffer with headaches? Also make sure it is a neurotologist who deals with all the inner ear stuff. Have you had any tests done to check you balance? Some of us on here have gone to have things like Caloric tests which is hot and cold water poured into each ear for a minute and they record the responses. This can show up any damage. I have had another where you stand on a moving wobble board type thing with moving scenery around you. You have to stand with eyes closed and open - again this tests your reactions. I had all this done and nothing of any significance showed up other than a possible bit of damage to the left ear (my affected side). I am waiting to have something called the Rotational Chair - sounds quite medieval and torturous!! To test my peripheral balance?! Unless you have this done right at the beginning, I think it is very difficult to pinpoint exactly what and the amount of nerve damage has been done. Still, at least I know there is nothing majorly wrong - although that doesn't stop me feeling rubbish and know I am still with the labs virus or whatever!! For all that I have read and researched - the same answer - it is a time thing, do VRT and keep as active as possible. We will all overcome this and not let it beat us! As Melissa says - keep the faith. Love and hugs to all, Gloria xx |
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Wow look at all the posts on here!!! Melissa thankyou for keeping us all positive, I know what you mean about not jinxing it, the amount of times I've told people I'm feeling much better then next time I see them......:( they must just think I'm putting it on. I have always had the sensitive head when there is bad weather or a storm coming so maybe I have always had some kind of inner ear thing going on?? Looking forward to the time that, that is the only time I feel off!!! B I had the caloric & ENG testing involving hot/cold water & funny goggles on with cameras to track the eyes, strange experience!! I saw a neuro after all that too was a waste of time really but good to rule things out I also had an MRI scan at the beginning too all of which is peace of mind & helps with the anxiety issues. Wierdly i met up with 2 old school friends last night to go to a Night with Sally Morgan (psychic). I was telling one of them about what I'd had over the last year & guess what she has had it since October. She has been sent to Neuro but may have to go to ENT too. Her worry (like mine) was that her sister has MS (like my mum did) so they want to rule that out. Good news is that she has felt a little better in the past few weeks so hopefully she is a success case. Bad news is Sally didnt read out my card I put in asking if I would get better soon!! :) Gloria hope you are still enjoying your cd, how are the VRT exercises going? I find the hardest one is the diagnol head turn when I'm standing on a cushion, I always fall off!! Lucy I was a lurker just like you to start with took me a while to pluck up the courage to join The Sharp Blue Crew. Glad you have seen some improvement you sound like most of us on here with the blips hopefully lasting less time & coming along less. Anyway I am looking forward to a few visitors then sneaking off to see my best buddie for a very long weekend I know laughter is the best cure & am sure there will be plenty of that. Jemma/Shilrey/Wendy/Binx & anyone else I've missed lots of love & wishes for a blip free time Claire xx |
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Hi everyone, Thanks for welcoming me with open arms. Looking forward to venting to people that actually understand! B (Montana) Lots of the docs here are pretty into themselves too. Takes forever to see them, and then when you do, it is useless. I had one ENT ask me what I expected him to do for me. Ummmm, what? Had no idea how to respond to that. I pretty much signalled to my husband that we should mosey. No sense wasting my time with arrogance like that. I have also seen a neuro and she was sorta helpful, but not at all realistic with timeframes. She did not understand why, at 3 and 4 months, I was still suffering. I have never been to Montana, but it sure does look gorgeous. I live in Manitoba, and us folk here like to venture to North Dakota and Minnesota. Probably seems a bit drab to most Americans, but we get pretty excited about it. Shopping is so much fun there! Nothing like an outing to Target and JC Penny to put a smile on your face! Hubby is a HUGE NFL fan and is already planning where to go for a game this season (even though he mentioned they may strike this year?). Aussie Donna Nice to meet you. Is Vanuatu the place where they filmed the American Survivor show one year? I recently watched the Oprah show when she was filming from Australia. Beautiful! Hope to get there someday. BINX I too have found these community websites much more knowledgeable than any GP. Such a saving grace for me! I have to say, this experience has severely reduced my trust in the medical profession. I feel horrible saying that and I know it is the frustration talking. I swear if I was 10 years younger I would go to medical school myself and make inner ear disorders my focus! Gloria I live in Manitoba! We are pretty much smack dab in the middle of Canada. I believe I recall you mentioning that you have family in British Columbia? So do I! In terms of Labs versus VN, I guess it depends who you talk to. Some of the docs I have seen use both terms interchangeably. However, an ENT that I saw in BC said that the major difference between the 2 is that with Labs, there is hearing loss. But with VN, no hearing loss is present. I believe he mentioned some other minor differences, but the hearing loss differential is the primary one. And I have had 2 hearing tests, both of which they said my hearing was above average (hubby does not believe it...LOL...I tell him I may have selective hearing when he talks). I too suffer from horrendous headaches, which I firmly believe have affected my recovery. I sometimes think I may have developed MAV but who knows. I recently started acupuncture in an attempt to control the severity of the headaches. Although not a huge fan of needles, and the fact that I feel like a human pincushion, so far so good. Will keep you posted! Claire I also had the caloric testing and ENG. I remember that day like it was yesterday. Not sure if they did this with you, but after they poured the water into my ears they asked me to recite things like animal types and city names in the order of the alphabet. She said they do this to see how your brain is functioning with usually normal tasks during the testing. I guess people tend to flounder after a while. After going through the alphabet a few times I got a tad confused and frustrated, and actually managed to blurt out some pretty decent language! In all fairness, I have been known to have the mouth of an otherwise cranky trucker on occasion...but can you imagine? I am crying because I am petrified of this water in my ears, everything is black cause of the mask you have to wear, and I decide to recite swear words to this poor technician. So classy of me! Anyhoo, gotta go get some groceries. It is soooooo cold here still. Spring cannot come soon enough! Xo Lucy |
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Hi! I guess I have been down. Sick of not being myself. I know you all are too! Sorry about that. I want to go sledding, skiing, and have 5 cocktails just for fun. I want to go to my horribly stressful job that I hate just because I NEED to. I feel terrible that my daughter has to see me like this. It is just the two of us and our family lives 400 miles away. I find that distance keeps the love in the family!! =) Tho it would be nice to have them now. I worry too much and I let the stress take over. I feel like I didn't respect my body and health enough before this happened and I intend to be much better after this. Nothing like being knocked down indefinately to get a better perspective!!! I think I was effected by the swine flu in late 2009. The small dizzy spells began after that. I need to stop trying to figure it out!! I am glad to hear that Donna flew with no bad effects!! That is something I worry about, not that I ever fly anyway, but still would like to have the option!!! Lucy, I never have gone to the Dakotas or Minnesota! I have never really been east. I always go west to the coast. You're husband should come to Missoula and catch a Griz game here at the college, not NFL, better. We are famous for it!! There is a huge rivalship (if that's even a word) between two Montana college towns. It's fun, tho I don't usually like football I get bored. I worry for the safety of other team fans when they come here!! :) I once tried to go to Canada, but was turned back!! It was rather embarrassing. It was the company I was keeping at the time, I was young!! Someday I'd like to try to go back! My sister ran a marathon in Vancouver BC a couple years ago and my folks went to cheer her on. They thought it was lovely! I would think that maybe I have the VN also. I have no hearing loss and only occational tennitis. I have read that there is a distinction between the two also! I'm glad you are here and hope you find an end!! Gloria, I'm sorry you're not great right now. It is so weird how that works and I obviously don't handle it well. You seem amazing. I find that in many of the wonderful folks on here! I was swinging my head all around the other day like an idiot and found the effects unpleasant. I don't know what I was doing. I do some head movement up and down and side to side and sometimes they make me feel swirlly and sometimes not. I try to always move my head as I walk. I find sometimes, on bad days, walking and looking to my right is hard. I've not been offered much more testing by my ENT only that he said he would be dumping me after a few weeks since there is not "proof" is is inner ear. I don't think anyone can truly help. YOu are right, time time time. Claire, I have to tell you that I love your pic!! You both look very happy!! Binx, I love your posts. I giggle at your break down of things and your daily ratings. How awesome you have 95% days. I'm gonna have those too!! Has anyone had a rapid heart beat with this? I have read it can cause some palipitations (sp), but was wondering if anyone has experienced it!! On a truly happy note, my sister is having a baby in July!!! We are excited! Something to look forward to! Talk at you all soon. Take excellent care everyone. Thank you, very much. B |
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HEY EVERYBODY!!! well the past few days have been AWESOME!!!! i helped my friends move to there new house, had a nice time with one of meh lady friends it was a swell :) i have been clear headed for three days now. i feel a bit drowsy, and broke down from all the moving/lack of sleep but OH WELL a good nights rest in me owen bed can change most of that problem!! :D I'm going to be flying out to Oregon to see one of my good ol friends whos dad is dying from brain cancer.... its not my cup of tea nor it is for anyone but friends help frinds out and thats what i'm going to do. but all and all everything is going good the dizzy moments/days still come but there SOOOO MUCH BETTER THANKS YOU SWEET JESUS!!!!! i have noticed though that i have had a couple swollen lymph nodes on the right side of my neck for the past couple weeks, going from the middle neck up behing my jaw... but i'm pretty sure its from the ear infection or something. if anyone has info on that i would be happy to read it!!! may the force be with you all!!! |
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Hi all, B - Worrying too much, letting stress take over, will I be normal again? All the things you are not alone in feeling. I promise you there are better and brighter days on the horizon. Sure, they get mixed in with the not so good ones, but knowing this is, in the main, a slow, time thing - then we have to have some faith and know we will be fine. It is hard though and not so easy to control those down feelings. I go up and down feeling positive, then negative, back to positive and I suppose having researched to find a 'cure' and really found nothing - I have to accept my fate. (Must have done something really wicked in my last life LOL!!!) I don't have hearing loss either, although the tinnitus has been not brilliant - so I don't know VN or labs? Doesn't matter though - still *!@**! awful (put whatever swear word you feel appropriate)!!!! I think you need to do a proper set of VRT exercises every day? Are you doing any that you repeat daily? I and a couple of others have posted a list of them on here - either back on this page or the previous page. If you can't find them - let me know and I'll re-post. They do help. BTW - get the rapid heart beat too B - all part and parcel! Congrats on your good news about your sister - auntie B! I'm sending you a big hug - oxox. Lucy - know what you mean about the selective hearing (very useful)!!!! Presumably you have seen an improvement since the beginning for you? Have you been given any indication about how long VN is likely to last or are you one of our merry band - been neglected by the medical profession and given no idea at all about what is really wrong and how we are to deal with it and what the outlook is?? You do sound positive Lucy - way to go girl! Claire - still doing ok with the cd and exercises - I too fall off just as if I was drunk - if only!!!! Really enjoy your visitors and week-end. Love and hugs to everyone - this week - only positive feelings will do - onwards and upwards! Gloria xx |
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Hi all Sorry I haven't posted for a while but I haven't been feeling very positive so didn't want to spread my negativity! B- I am feeling very much like you at the moment, jut praying for my life to return to normal. Everyone keeps telling me I have to be patient. PATIENT, I've had it for 10 months now; I have had ENOUGH. How long have you had this illness for now? Don't get me wrong I have better days now but I still have some bloody awful ones too. Get VRT as soon as possible. I think the docs have left it too late for me. I am only just starting it now. As for the rapid heartbeat - I get it a lot. I have been hooked up to ECGs and everything because it worried me so much but nothing was ever found. I think it just part of the anxiety that comes with this condition. Keep strong x Claire - sorry I didn't reply on facebook. I haven't really been on it in a while. Hope you have a lovely half term. I totally admire how much you do with this illness. I am still scared to go out socialising but I am slowly getting a little better. Would you mind emailing me the exercises you do. I have a new therapist (private again!) and I am not convinced she is any good! She mentioned the Cawthorne exercises but my ENT said those exercies are a waste of time for this condition and more for BBPV. I'm thinking maybe I should ask for a refund as I had to pay for 6 sessions up front. Lucy & Sharon - welcome! Rant a much as you like on here. You will get lot of support on this site. Jemma - Hope you are well! Do you know a good therapist in the Manchester area? I would be willing to travel to find someone who is good at VRT. Well my viral infection is still not totally gone. My ears still feel full sometimes and they keep clicking. I also am still having days were my sinuses feel really blocked. As I mentioned above I saw my new therapist on Friday. She didn't do any VRT therapy with me. She was more concerned about my neck. She worked for an hour on my neck and since then I have been in agony and extra dizzy! She said my neck muscles are really tight and my neck is out of line which will not be helping with the dizziness. I would rather hane neck pain then be dizzy!! I wanted her to give me loads of VRT but she just gave me exercises for my neck and said she would see me again this week. I wonder if I am wasting my money? With the bad weather, the therapist working on my neck and my viral infection I have been feeling quite off. The pressure in my head as been insane. I have not had it this bad for months. What causes the pressure? And has anyone ever found anything that relieves it? The pressure has been the main problem recently. Yesterday I had to make a 2 hour trip to Newcastle and decorate an investment property my boyfriend has bought. I knew I needed to have a good day to get through it so I thought sod it I am going to take a stemitil. It worked! I got through the day and it felt good to spend a full day doing something totally different for a change. To be honest I still prob take around 5 tablet a month but my consultant didn't seem too concerned by that as he said you can take 3 a day and that i when they cause problems. My GP also made me take them as an when needed during my ear infection last week to keep things at bay. I thought this was sensible and took one per day for 3 days. It may slow down my recovery a little but sometimes I just need a bit of relief when I have to get through things. To everyone else - thinking of you all. Take care, speak soon Ashley xx |
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Ashley, Try a couple of aspirin at bedtime - then 2 more in the morning if you can tolerate them. For some reason they worked well for me in knocking back the HEAD symptoms you describe in your post. Depending on which pain you want rid of - I have found the following; Head Pain / Pressure: Aspirin The neck / the neck / the darn neck: Ibruprofen My chiro won't work heavily on my neck now since I described to probs I have. Says it could mess up recovery. What he will do is try to release some of the muscle tension - but gently !! Think he is worried that some of my symptoms may be due to an underlying neck problem - and until that's investigated doesn't want to put himself at risk of causing further damage or being sued. I can understand that. It seems to be the weather pulling some of us down at the mo. My periods of 95% recovered coincide with the good weather - and then i slump back to 55% or so when it's bad ! Looks like any inner ear prob makes you a natural barometer. So snap !!! Good weather = Ladder / Poor weather = Snake. Roll on the good weather !! BINX1965 |
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Hi everyone Well I'm afraid I am still on my snake. It has been a rough few weeks for me with fatigue as much as anything which has a knock on effect with the woozy head. I am trying to figure out if I have caught a viral infection or if it is just part of the fatigue I get with this but it seems to be quite bad at the moment. Sometimes I think I have M.E. as well! I have been resting a lot these last few days. I really hoped to see a good improvement this year and I am praying it isn't going to keep on and on the same. Ash sorry you aren't too great either. I didn't start vrt proper until 11 months in so I don't think you are too late. No time is too late to try and comepensate. Ash did you ever have the caloric test? I forget where everyone is up to with so many newbies! I don't see anyone professional now. No doctors have kept up with me and I dont have any physio or vrt anymore. I only had NHS VRT anyway which was just cawthorne cooksey however I do have the details of a VRT specialist I was recommended called Nova Mullins at the The Cross Clinic in Lymm, Cheshire (telephone no: 01925 759655). I spoke to her on the phone but didnt end up going for vrt - she did sound as though she knew what she was talking about if you wanted to try it Ash. I am not sure where you live and if it would be feasible for you to get there? Gloria happy for your god-daughter and her expecting a baby. I don't think you are being selfish at all not wanting to commit to looking after a baby. She may find she doesn't want to go back to work when he/she arrives. My sister is so committed to her little one. He is so cute and I did babysit him for an hour when she went shopping last week. He is demanding but so so cute. Sometimes wonder if I will ever have children. I did want one but nowadays it is hard enough just looking after myself. good luck with the new job as well Gloria - very brave of you and I hope you enjoy it! Lucy and Sharon welcome to the site. So much of what you say I can relate to. Being a long sufferer I know just how frustrating this condition is and anything you want to know just ask and we will all try to help. Claire shame you didn't get an answer at your psychic night. I have thought how interesting it would be to see someone like that now I have pretty much given up on the medics to find me a cure! Reckon they might give me a better idea of when or if I might recover than the doctors. Anyway that's all for now. Sorry to anyone I missed. Lots of Love Jemma xxx |
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Hi all, B I hear what you are saying. I too want to be carefree like I used to. Have 3 too many drinks, not worry about how I will feel if I do this or that. I feel guilty for not working. My life is so drastically different than it was a year and a half ago. It is almost like I am living someone elses. But we have to believe that over time, things will improve. After 1.5 years with this thing, I have gotten so much better. But it is still hard having setbacks; I get really depressed. It is just so so hard. Keep steady with the VRT! Oh, and I too used to have rapid heartbeats on occasion. I attributed it to stress though. Not sure if that is right? Gloria Love the profile pic! You look very happy! I remember when I was at my worst, I refused to have any pictures taken of me cause I did not want to remember how bad I felt. Weird hey? But yes I have seen improvement, but not without setbacks. And they are still hard, almost more so now because the better days are so good. It is hard to see them taken away. But we definitely must keep the faith that they will eventually dwindle until they disappear! Ashley You look so young! I am 30 and I remember the docs telling me, oh you are young and will bounce back so quickly. Not so apparently. Started with this crappy illness at 28. Definitely hate that so much time has been taken from me. Keep strong my friend. And I hope you are on the mend soon from your viral infection. Jemma For me, I always know that I am about to slide down the snake, because the fatigue is the first to hit. Then the off and unbalanced waves. I could be sitting there doing absolutely nothing, and it hits. Hate it. Let us all hope for better days, and a better year! Xo Lucy |
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Hello everyone, Just a quick post with some info: Anyone suffering for a while might want to have a look at the following link regarding Perilymph Fistula. http://www.dizziness-and-balance.com/disorders/unilat/fistula.html You probably need to paste the above into your browser. It's another inner ear condition often mis-diagnosed as labs or meneire's. There are discussion boards around picking this up with some people going undiagnosed / mis-diagnosed (after all the usual tests) for upto 10 years. Once they have had the fix they are cured in most cases. Untreated the symptoms rumble on and it becomes chronic. The symptoms of perilymph fistula may include dizziness, vertigo, imbalance, nausea, and vomiting. Usually however, patients report an unsteadiness which increases with activity and which is relieved by rest. Some people experience ringing or fullness in the ears, and many notice a hearing loss. Some people with fistulas find that their symptoms get worse with coughing, sneezing, or blowing their noses, as well as with exertion and activity. Also can be accompanied by pain at the base of the skull, neck pain and neuro symptoms (inc anxiety and panic etc etc etc). Chronic fatigue is also reported by sufferers on the forums - some saying that they thought they had ME. What may interest some - is that the condition worsens with changes in atmospheric pressure - known as barotrauma. I just knew the 'human barometer' would come into it somewhere. It indicates that it is a rare condition - but it's not that rare as it's being covered on discussion boards just like this one. It is also covered in the GP's handbook here in the UK as another option after labs, VN and meniere's. Anyway have a look and see what you think. It may be worth throwing into discussions with your ENT or neuro - if you match the symptom profile ? For those that have already been down this road - apologies for the repeat. My own head ratings today: Morning 65% (weather outside - dull / rain) Mid Day 70% (weather outside - dull / overcast) Evening 90% (weather outside - clear / stars) Stay safe, BINX1065 |
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Hello just a quickie mainly for Ashley, if you are happy to inbox me your address I can send you some copies of 2 lots of VRT the ones I had to start & the ones I have now, dont want to jinx anything!!! but I am feeling as though i have climbed a few more rungs of the ladder in the last week & i have been doing the VRT religously. Dont know if you've ever been on the NHS website about labs but there is a video of a lady called Rachel(??) who started the VRT after almost 2 years of uncompensated Labs & she saw huge improvements with it so its worth a try!! Lucy yep I also had to do all that alphabet stuff I think I may have slipped out the odd *@*@ word too! very strange. B thanks for your comment on my photo that was taken on a good day :) Funny isnt it how we all look so well on the outside!! Dont worry about the heart racing etc Its all part of the condition the body goes into panic mode when its dizzy due to the abnormal happenings in the balance system. I still get the heart stopping/starting/racing feelings now but have managed to talk myself out of worrying about them as I'm still here after 1 year :) no heart attack yet! Jemma sorry its still so bleak for you at the moment. I can understand the feelings about having ME but my VRTherapist said to me that the body is so much more worn out than any 'normal' body because it has to work so much harder to maintain balance etc to just carry out normal tasks so fatigue goes hand in hand thats why the relaxation part of the recovery is so important as the body needs extra TLC!! Gloria glad ur 'enjoying' the VRT exercises I think thet could be helping at the moment but who knows maybe I'm just heading back up the ladder anyway. Guests go home today then I am off to my friends on the train on Friday determined to feel okay (even though its the dreaded TOTM coming up) am going to take my walking boots with me too so that will be good VRT!! Anyway love to all Claire x |
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Hello to all those living in labs land! Have just been reading up on all the recent posts, wow there are soooo many people on this site. I haven't been on for afew days as I've had a bit of a relapse in that i've been really spinney and off balance felt exhausted. Was determined today to take my grandson out, it's the school holidays this week. We went to a place called Wollaton Hall,a large historical stately home,open to the public with lots to see and do both inside and outside in the vast parkland that surrounds it. Since getting the labs I've struggled to go out but managed fairly well until it was time to decend a very high, sweeping staircase and the walls started to spin,I couldn't get down at all. The other option was to use the lift, another thing I've got a phobia about since the labs! Well what a complete plonker I felt, sat on a chair clinging onto the wall and sweating. Fortunatly my amazing mum and dad, both 75 but very spritely, eventually managed between them to get me and their great grandson down the staircase. We did laugh about it later. We wonder how many people thought I was drunk!! Think I might get a T shirt printed with the following caption....'legless with Labs NOT lager! If anyone out there has a good idea for a T shirt caption, let me know cos I'm certain I must look very peculiar to members of the public as I stagger about occasionally waving my arms in the air to balance myself! B I too have had the crazy heart beat issues, also long spells of palpatations, apparently it is all part of the illness and isn't connected to a heart problem ( I'm not a medical person, I hasten to add, but am just going on the info I've found on this illness). I totally admire the fact that you are coping with your daughter single handedly with your family 400 miles away. You must be an incredibly brave person! It doesn't surprise me that you get a little down and worried,personally I'm not sure I would have your inner strength. This illness is utterly terrifying, the symptoms are unlike anything I've ever known or heard of and so weird sometimes that I have occasionally thought I'm going abit bonkers,theres also the sudden panic that the Docs have got my diagnosis wrong and I'm really about to 'pop my clogs' and snuff it. I'm sure I'm not on my own with those sensations and worries and thats why this website is such a brilliant thing! Claire You always sound so positive and you seem to do so much and try not to let the Labs effect you, I think thats really brave. I can't imagine socializing, the dizzys are just so terrifying! Binx Thank you so much for the email address, that's really kind and I will use it! I LOL at your History of Medicine- brilliant and so accurate too. My school is on half term hols this week and I so wish I could be well enough to return next monday with all my lovely colleagues who I miss. Right now I cannot envisage returning any time soon, the thought of it terrifies me. The nature of my work requires me to be at peak fitness,colleagues need to know that they can trust and rely on you in what can, very often, be a physically volatile and dangerous environment. We are a very close team due to the emotionally demanding nature of our work and I could not forgive myself if a colleague or young person was hurt because of my inability to function at 100%. Have you any idea when you're likely to be able to return to work? Ashley I have no idea how those of you who are still so young are coping with this hideous debilatating illness, at your age I was out partying every night and having a generally wild time, my daughter is 26 and I would utterly hate for her to be struck down with this. Let's hope you recover soon. Couldn't believe you managed to travel 2 hours and arrive without a spinney head in Newcastle- not sure I am that brave! Also don't worry about spreading you negativity, we've already all got it on the bad days, that's just a part of this rotten thing! Jemma You mentioned in your post about ME, an equally horrid illness to this, but I really think you are worrying needlessly. I am usually active, cheerful,busy,full time working in very demanding job, mum, grandmum and rarely poorly but this thing has wiped the floor with me big time. I have zero stamina, legs hurt, no strength in muscles, headaches, neck ache, always crying, would stay in bed every day if I didn't force myself to get up. Jemma, like every one else on here, I too am a shadow of my former self and I see no end in sight. Please please try not to worry that it could be something else, tell your Doc what your thinking and I'm sure he can reassure you. This illness is just soooo frightening but eventually we will all get better and a new bunch of sufferers will be airing their fears on here. Sean So brilliant to read your post and how you had a great time helping your friends move house. Do you think your swollen lymph nodes are a sign you might have pushed yourself abit. That's the trouble with this thing it takes it's toll and drags us down and our immune systems with it! Look after yourself! Gloria I love reading your posts, you are so lovely and caring to everyone. When I am slipping down the snake I remind myself of what you posted to me 'sharon, you WILL get better'. Very reassuring and I say it to myself now. To all of you who have been forced to endure the test involving cold and then hot water being poured into your ears, firstly, how on earth did you survive what can only be described as medievel torture,secondly,how did you restrain yourselves from doing the torturer some serious physical damage and thirdly, did it actually have any positive results for you?? I do not, under any circumstances, want to endure this unless it IS going to help!! speak soon sharon. |
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Hi everyone so sorry i havent posted dizzys quite the same as usual tbh. No better but no worse at this moment in time lol Quick qestion really as have to have shower boys are in bed finally! I have gotten a new job and its two days a week in an office one day I will be totally on my own running the place no body there. The other day I will be with someone else. I have to deal with customers aswell but its quite a quiet office . I hope Im up to this job as Ive had to leave a couple I have had due to symptoms but they were a lot more physical. Please give me some hope and also ANY tips like should I carry stem with me or sturgeon and was also thinking of getting my glasses tinted a bit as it has fluorescent lighting aswell . Sorry will repley to everyone later this week but any input on anyone who works with this . Thankyou Guys! So glad these boards are here think normal people think Im a loony xx |
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Donna - Re: Fluorecent Lighting just read your post about going back to work. Good on ya - it may take a bit of adjusting but I am sure at you'll get there. Just a bit about fluo lighting. This type of lighting can cause probs for many people who are photo sensitive - but can be particularly troublesome for someone with an inner ear prob. Your extra visual sensitivity combined with the miss match of signals (however small) from the ear apparatus can cause confussion in the brain's processing plant. Thus bringing on vertigo type symptoms or a swimmy head. What you don't realise (because it is undetectable to the human eye) is that the fluo lighting flickers at high speed - almost like a high speed strobe - on and off at over 50 times per second (this is known as the frequency) - of cause we see the light as on all the time - but it's this invisible flicker that can trigger your symptoms. Although you don't see them going on and off at high speed - your brain does. A few posts back you will see i did some self testing in fluo lighting environments to see what happened to me when the symptoms came on - have a read it will be reasuring. I think the more you can expose yourself - the brain will learn that it's not a problem and eventually will not over react to the stimuli. Tips usually given to people with photo sensitivity to fluo lighting include; 1. Make sure as much natural light as possible enters the work area - this cuts flicker and evens out the light source. If there's lots of natural light don't turn the fluo's on. 2. If the light fittings have 2 fluo tubes fitted - ask if one of the tubes can be removed from each fitting. 3. If you have a desk - get a desk lamp. Incandesant lamps have no flicker. This will again smooth the lighting directly in the area you work again cutting out the effect of flicker and any secondary flicker bouncing up from your work surface. 4. If you use a computer - make sure the monitor is one of the new type (LCD) - if it's an old one get an anti glare screen fitted to it. 5. Get some tinted glasses - but they need to be close fitting and wrap around if possible - otherwise the flicker creeps in at the sides. 6. Have a bottle of water handy. This always calms an attack of the swirlies. 7. Try to keep the temp in the room as low as you can bare - being hot with a swirly head is not a good idea. 8. Ensure work surfaces are non reflective where possible. If they are reflective see if you can cover as much of the area as possible. Dark colours absorb the light - light colours reflect. 9. Toilet cubicles with fluo lighting can be troublesome - i think the flicker in a small confined space particularly bouncing off white walls - causes probs. If you find it's a prob for you - either turn off the light (if there is natural lighting) or it's time for the glasses. 10. When dealing with someone face to face - keep looking around the room. Don't just concentrate on their face. Under fluo lighting (for those that are sensitive) this can bring on what's called 'de-realisation' - again triggering vertigo type feelings and the swirlies. Ideally - if you can - remain seated - but don't just focus on someones face during a conversation - keep changing your visual perspective. 11. Let your boss know that because you have had inner ear probs the fluo lighting may have some effect on you - but this will pass once you become acclimatised to it - this is usual. Most bosses are sympathetic - and will even help to make any adjustments to make your transittion easier. Anyway - that's enough from me ! Good luck with the job !!! BINX1965 |
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Hello everyone, Labs Update Report Last 7 days - seen 4 good days of between 70 - 90% with very little or no swirl. Just feeling very fatigued at times. Ear Symptoms. Still waking with T in the mornings - but disipates to next to nothing once moving around. I still feel some mild irritation / mild pain behind the ear drum from time to time - the ear drums are also very sensitive - can feel them twang (with mild pain) when i pull on my earlobe. Other Symptoms Started to get a bit jittery (ahhhh the anxiety) at night time in bed - when my mind fixates on what I have been through and what lies ahead. Yes - the heart will pound and I think it may develop into a panic like attack - but i seem to just about 'head it off at the pass' before the point of no return. Sometimes the anxiety and panic type feelings still wash over me for no apparent reason - and i feel my paws start to get a little sweaty. As i stated in one of my earlier posts - once the labs is all but concoured - i feel there is still a battle to be waged with this demon. This illness goes on for so long the deep scars of anxiety / panic / phobia may still need to be overcome. The Neck The Neck |
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Binx Have to say that was amazing information! As Im ony my own one day a week that day the lights will be off in my office. But thankyou so much thats brilliant! x |
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Hey everybody So i dont think my swaying / rocking/ diziness or whatever you want to call it is improving at all, which begs me to question if after all this time i have inner ear damage or whether its MAV, i mean ive been rocking 24/7 for 15 F***en months, I only get relief from movement and its not Mal De Barquement as i didnt get it after a cruise / plane flight. Lucy, i too feel like Ive been living a different life since this happened to me, i feel like i died 15 months ago at the age of 19 and have been living a different life ever since :( Who knows why these things happen, i always get struck by these random illnesses (this is my 3rd experience with an extremely debillitating illness) luckily i recovered from the other two, i guess its gods way of balancing all the incredible things he has given me through luck and hard work. Anyways I thought id get the depressing stuff out of the way first, the great news is I'm still managing to enjoy myself some days and my new job is very enjoyable and a huge pay rise over my previous line of work. I wish everyone a swift recovery. |
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Wrote a big ol post this morning and my computer failed. That just makes me grumpy!! I had a yucky seven days that ended with a wicked sinus headache yesterday. I got excited to feel better and was playing while I ran away from my daughter and crashed. Although I am very bruised, I laughed and laughed. I required some ice! I couldn't replicate the incident if I tried!! All good fun. Labs and running, not so much. I hope I will have a few good days now. Sometimes I just can't tell. I hope everyone is feeling up today! B |
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Hello everyone, Some of you may have read my previous post to Donna regarding fluo lighting. One other point of interest you might like relates to the relatively new (certainly in the UK) introduction of the compact fluorecent light bulb (ecconomy bulb). This type of bulb replaced the old un-ecconomical incandessant bulbs / lamps we use in the home / domestic situations. You will note that these new 'bulbs' look like small fluorecent tubes - and indeed they are - with the control unit built into the base - thats the bulky bit at the end where it connects into your bulb / lamp holder. Do they flicker one may ask ? Could they bring on an attack of vertigo or the swirly head ? - just like the big fluorecent lights do for some people. The answer is potentially YES. Please note I only say potentially ! Although there's an undetectable (with the human eye) flicker like a fluorecent - the flicker frequency is at a higher rate than a typical fluorecent light so the brain / eye may not detect it. Though some evidence suggests there is still a portion of the population that is sensitive to this frequency of flicker and will potentially experience migraines, seizures etc. (source: Scientific American) Could this also cause a problem for someone with an inner ear issue - because of the eye / ear / brain link ? No one really knows as its not been scientifically PROVEN - but - if they can cause probs for people who suffer with migraines and epilepsy (this is proven) then i would say potentially YES. The brain must be able to detect this higher rate of flicker - even though the manufacturers say it can't. All i'd say is don't be too concerned about this issue. Although - if you have swirly episodes in certain rooms at you house - when the lights are on at night - it just might be worth looking into. You might be one of the sensitive ones !! As i indicated in my previous post - it's the big fluo lights in stores and offices that are the main culprit for those with inner ear issues. Mainly due to the slow flicker rate which 'is' detected by the brain and helps jumble the faulty signals even more. Hello swirlies and the sense of de-realisation !!!!!!!! On a final note - a quick one to inspire your recovery - especially if you are feeling down, anxious, panicked or going in reverse at the moment: A Cherokee grandfather teaching Tribal ways and philosophies on life to his grandson, spoke: "A fight is going on inside me. It is a terrible fight between two wolves. One wolf is evil. He is illness, anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority and ego. The other wolf is good. He is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith." Looking straight into his grandson's eyes, the old man continues: "This same fight is going on inside you, me and every other person in the world." His grandson, thinking about this phenomenon for a moment, asks his wise old grandfather: "Which one will win"? The Cherokee grandfather replies: "The one you feed"! I thought this was a good story to share. Don't feed the negative wolf inside of you, feed only the good wolf! Sue - Hope you are picking up - with a few good days !! Stay safe, BINX1965 |
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so in recovery do you start to feel like reall tired from all the stress? i have gone 6 days without symptoms besides when i wake up. but now i get tired real easily. and i have some swollen lymph nodes on the right side of my neck :o other than that everything is peachy :) |
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Sean, wow!! How wonderful that you have been symptom free for six days!! Have you been stressed out? I get swollen lymph nodes on the back of my head in times of great stress or when I am fighting an illness. I would say to pop into the Dr to have them checked. Maybe you need a good anti-biotic. I hope you are done with this forever! B |
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Hi all Just a quick one today, I need some help/advice. I have been experiencing this sensation every so often where my stomach starts to flip and my heart flutters then I get all hot and flustered. Horrible sensation!! It has happened at home a few times, especially through the night but it also happens when I am a passenger (and occassionally as a driver)in a car. I have never suffered from motion sickness in my life so I don't know if it is that or anxiety? The best way to describe the feeling in my tummy is like when you ride a rollercoaster as a child and your stomach flips with nerves/excitement but you don't really feel sick its just the nerves of your stomach. I hope i'm making sense and not sounding totally insane! LOL! I don't particularly feel dizzy when this feeling occurs so I can't really relate it to that. I just ask because my GP keeps asking me if I think this feeling is motion sickness or anxiety so he can treat it and I don't really know because I don't know what motion sickness feels like! Anyone suffer from motion sickness and can relate to this? I really hope I'm not suffering from it as travelling is a big part of my job. But surely if it was motion sickness I would feel it everytime I travel?? Any help would be greatly appreciated. Have a good weekend all! Ashley xx |
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Ashley, I get motion sickness when I ride in the back of a car and that is not what it feels like. If I had to guess, I guess anxiety. I get anxiety and that sounds the closest. Your body is in stress mode with this wickedness and I think it reacts. It gives me terrible, overwhelming anxiety. I'm sorry you are experiencing yet another symptom. Motion sickness, for me, feels like I spun on a merry-go-round and got off. I get sick to my stomach and generally feel ill. OR how you feel after you spin in a circle. It may be different for everyone. I hope you get it fixed soon. B |
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Hello ASH Snap - I also get your symptoms and have done since the start. Every so often the pounding heart stuff jumps up - almost palpitation like. The hot and flustered bit which comes at the same time for me - is my hands get all hot and sweaty. This almost seems to happen for no reason. I was told by the GP that this happens when you expose yourself to a swirly 'trigger' for too long e.g. too long on the computer - too much big screen TV - too much visual disturbance / ditraction - sometimes noises or face to face conversations. Brain is in overload (cos it's still tied up with thinking about balance) and body pumps andrenalin as a reaction. I think Gloria also mentioned it a few posts back - your symathetic nervous system is just reacting to the info it has available and doing what it thinks is right. I find if i don't shut myself down properly before getting in bed i can have an episode in the night - the brain is still racing from your last activity - so i make sure i avoid anything heavy on the senses at least an hour prior. A quick adrenalin burst is also what gives you the butterflies in the car - even though you don't get the swirlies your senses are responding to a trigger - which they are more tuned into now. I had it bad recently when i was in a car that went over a fly-over at speed - we all feel a 'butterflies' stomach sensation to some degree - but this was more dramatic following since my inner ear probs - my insides really jumped and spun. Cornering at speed also seems to bring the rush. It may feel like anxiety - but your body is just reacting to a sensory cue. I have a friend who had a similar issue when driving - they had had an inner ear prob - but also suffered from long term anxiety - so a double whammy. They were prescribed beta blockers which did sort it out. My own driving confidence is not good yet. Just my thoughts. Take care, BINX1965 |
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Hi everyone Ashley, i know the feeling you are describing, its hard to describe isnt it. I get it when i am a passenger sometimes, i had it the other day just watching tv. The only way i got rid of it was walking round the garden in the fresh air. Hope the neighbours werent looking out the window!! It must be a reaction to what is happening in our ears/heads as i have never had it before. I agree with B and Binx there must be symptoms of anxiety there, even if we are not aware at the time, i also get the sweaty palms like Binx. I reckon at the moment if my big toe was hurting i would blame it on labs as it seems to affect so many differnt parts of the body. Hope you get a break from your symptoms soon as have said before it is a cruel illness especially for you youngsters. At last my right ear (affected side) has settled down, touch wood, not so much fullness or tinitus which is good. Had the swirlies bad yesterday whilst out, think with the girls being off school have had a busier week and i guess it catches up with you. B, you asked what half term was in an earlier post, it is a week off school between the xmas and easter school holidays. Sorry to hear about your crash with your daughter the other day, that will teach you for trying to run whilst being drunk on labs!!! Hope you have been having fun together, its tough when you are a long way from family. Im lucky i have my sister fairly close for support, she has been a godsend. Sending love to you accross all those miles. Binx, what you said about flo lighting, very informative, (where do you get all your info form). Where i used to work was and open plan office which had it in, it drove me mad before if got labs, could never go back to it as shops with it really send me off balance now. I find i am so sensitive to some tv shows, ie, when X Factor was on, things like Dancing on Ice, as there seems to be so much flashing in the background cant watch too much of it anymore. Even some adverts are too flashy. They dont consider us labbies. Still most tv is pretty much rubbish these days. To all the other labbies on here, wishing you all a dizzy and swirly free weekend. Lots of love WendyXX |
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Hello everyone, Interesting bit of info i came across on one of the other sites; One of the labbers knew a ward sister that contracted labs. As she worked at a hospital she was visited (at home) by various consultants and ENT specialists. She was suffering with the labs side effects of anxiety and panic - as well as all the other rubbish. They told her that to recover quickly the anxiety and panic must be squashed as this stiffles recovery. As such she was asked to take a single mild anti depressant at bedtime. She was someone who didn't like pills - but did it on their say so. The other advice was to avoid any meds that delayed compensation, to walk at least 1 mile per day - however difficult and to maximise rest periods (12 hours bed). Recovered in just over 3 months. May have been one of the lucky ones. Wendy: Think it's my background that makes me spew forth some of the occupational / work related info; Electrical Engineering / Control Systems Specialist / Environmental Health / Health & Safety / Occupational Health / Social Services / Education and Schools / Human Resources / Management. In past lives - managed to work in some of the highest risk environments on the planet - and my doc thought i had developed a panic disorder (cos i felt like collapsing when i went in a supermarket under the fluo's). What a joker !!!!! Didn't like it when i told him i had forgotten more about the subject of panic disorder - than he'll ever know. Been on the PC too long - my paws are sweating now. Wishing everyone up the next ladder !!!! Stay safe, BINX1965
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Wendy, you are wonderfully kind. My daughter and I have fun when we can. I guess we should limit the fun to just walking!! I wish the bad days were predictable and less handicapping! Good to hear your ear is giving you less trouble. Now to just recover! How old are your girls? I'm so glad you have your sister. My sister lives 500 miles in the other direction then my folks and my brother 500 miles past my folks. We are all over. Sometimes I wish I had some help, especially on the bad days. We muddle through! My folks tend to stress me out so the distance is good. I love them nonetheless!! I hate those darn flourescents!! They ruin a perfectly good outing and they are everywhere! Sending loves in return. Binx, interesting story. I think it is different for everyone. I read a story about a young man who took meds and recovered in six weeks. SIX WEEKS! Imagine that! The nurse at the ENT I see had it and also recovered in six weeks. Some are so very lucky. What would you say are the drugs that hinder compensation? I have heard in smaller doses some are not a hinderance. You have some much knowledge, thank you for sharing! Sharon, how old is your grandson? I couldn't imagine how that felt on those stairs!!! Thank goodness you had you folks to help. Thank you for your kind words. You are tough too! This illness makes me feel crazy and frighened. I hate those days. I hope you are on the up and up! My ENT wants me to have an ENG. He now is thinking it is inner ear after all, as Meclezine reduced my symptoms. He knew that already, but he must have forgotten. They forget you the minute you walk out the door. Please tell me what this test can do for me? If I take it can anything different be done to help me? It is an expense and it seperates me from my low dose anxiety meds for three days. I have to function to get my daughter taken care of each day, so I don't want to be a more miserable mess then I already am if the test cannot help me. Thinking of everyone and wishing the very best. Wonderful weekend to all!!! B |
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Hello everyone, For some excellent free info on anxiety and panic please check out the following: http://www.anxietycoach.com/anxietytrick.html It might be useful in helping you cope till you get out the other end. Some good stuff on there - including some tips on anxiety and driving. B - From my previous post. I guess when they talked about drugs that hindered / delayed compensation they were referring to stuff like Prochlorperazine Malate (Stemitil) and Valium (Diazapam) etc etc - which have a smoothing effect on the faulty signals - thus fooling the brain. As i say i can only hazard this guess. My current update: Not far off Sean's post. Fatigue is an issue - feel exhausted from doing nothing. Any wobbly balance / heads issues subside an hour after rising. Some T on waking but eases to nothing during day. Anxiety still hanging round - but no where near as bad as six / seven weeks ago. Can now get out and about no problem. Still have to be cautious of some swirly triggers - but have no probs exposing myself to them. Odd headache - think it's my neck stiffness / ache that causes them. Aspirin for headache. The neck - sometimes it's good - sometimes bad. Life Barriers: Need to start driving properly again. Not yet back at work / Social life has been almost completely on hold. Meds: Aspirin / Valium on standby. Stay Safe ! BINX1965 |
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Dear all, it's been about a month now since I posted. I didn't want to tempt fate as I've been there so many times, when I've felt better and thought the hellish symptoms were over, only to return again. At long last I seem to be pretty much "normal". It's lovely to feel good, although I do need to pace myself and watch out not to over do it. Somebody on here posted ages ago that this illness seemed to go after a certain time scale, well, I missed the first few and am hopefull that as my 5 year anniversary with this thing is coming up maybe I'll be clear now! fingers crossed.If I knew what it was that helped I'd tell you all, I know only too well how awful this is and how we are all longing for a cure. Fingers crossed for you all I'll keep you posted especially after it seems like months since any specialists seem to have taken me seriously, and now I have a series of balance tests due in 2 weeks time - and now I don't have any symptoms -dilemma now do I bother with the tests? Love to all Sue x |
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Okay so i have been having a GREAT week, today i feel a little off with some drowsyness nothing new. my last week was about 80 to 90% symptom free!!!!!! :D tomorrow i;m going to my first concert since i came down with this insanity illness hopefully all goes well :) BINX i feel you man i pretty much have all of your symptoms, i tske sinus pressur meds for my ears and thats about it :/ great to see that your helping people out on this web page!!! I also cant wait to start collage after this illness goes away, i should have started last year when i graduated but i'm glad i didnt lol to everyone els eat healthy, sleep well, exercise with whatever you can do, and keep your mind ocupied :) peace, and love |
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Hello everyone in Labs land. Well I'm now on week 12 of this weird and crazy illness and although massively improved from the totally bedridden and throwing up patient I was in the beginning I am still experiencing so many horrid symptoms, in particular the awful spinning which often just happens for no reason at all,I am unable to fathom what has triggered it which kind of makes it even more stressful as it's so unpredictable. Am still not brave enough to get into my car and drive, the thought terrifies me to be honest. Am back at the Docs next week as my sick paper for work expires then. Will push my Doc to refer me to the hospital and not keep fobbing me off. Everything crossed for that!!! B My Grandson is only 3, he is the light of my life I am totally besotted. I have never heard of the test you refered to in your post earlier, 'ENG', but I've not had any experience with the specialists so far so my knowledge is quite limited really,perhaps one of the other postees might know what it entails or you could try Googling it and see what you get. I'm sure like all of us on here you will give it a go whatever it involves and however gruesome it may be if it could result in you feeling better. Good luck anyway!! Binx Loved the cherokee story, very true! Thought your post re-flo lighting was really informative, everywhere seems to have them, worrying when they can trigger a spinney. I read with interest your occasional postings about your progress with driving, you certainly seem a little braver than I am where that's concerned. I drive so much in my job I have no idea how on earth I am going to regain my confidence, I'm so worried about having a spinney whilst driving and causing an accident then my insurance refusing to pay out because of this illness. Doctor just says ' it's about when you feel your confidence has returned'! But I wouldn't have a problem with my drivng confidence if I were no longer experiencing the dizzies, that is all that knocks my confidence!!! Today I was just sitting on the sofa talking and suddenly that hideous sensation of everything moving accurred and the next thing- I was spinning, all I could do was wait for it to pass but then there's the after effect symptoms,shaky,sicky etc and the heaviest legs in the world. How is it safe to drive with all that going on? My worry is that I will just always have these symptoms now, I feel as though I have got to a certain point in my recovery and stuck there, as though I've plateaued! I despair some days. I have now given my Labs a name, Bob! When I am unable to do things I explain it by blaming Bob, eg- 'can't go out for a walk today because Bob is being really awkward this morning, he's had me awake half the night again'. Probably sounds really weird but it helps seperate the illness from me as a person! Many years ago when I was a social worker for young people it was a stratagy I used alot in counselling sessions, had this lad who would open up to me for hours through his hamster,his hamster had been abused by it's father who was an alcoholic etc, it was safe to relay his life experiences through the hamster as it emotionally distanced him from it enough to feel safe. So this is an additional strategy I will adopt to aid my recovery, it has made it more humourous if nothing else! Would be interested to hear what treatments you are currently undergoing as we are on almost identical timelines with this thing and live in the same city. Ashley Re your posting 25th Feb and the horrid tummy symptoms etc you have described, it defo does not sound travel sickness related. It seems to fit the symptoms assosiated with anxiety and stress. I have a daughter who has recently experienced quite a serious nervous breakdown- bad enough to hospitalize her for a while last year. She is now much better, has returned to work, went abroad on holiday in the summer,is able to socialize again and is basically back to normal although is undergoing counselling and is on medication. She occasionally suffers with panic attacks still and she describes some very similar physical sensations as the ones you have refered to. I expect it is anxiety from this hideous illness that is the cause of your horrid symptoms, it has turned us all into mere trembling shadows of our former selfs that's for sure.I don't know what medication you already take but maybe the Doc could advice you on something that would help. My lovely friend told me yoga might help my Labs stress and awful anxiety attacks and proceeded to demonstrate some of the moves she does at her classes. Believe me Ashley they would be carting us Labbies off in an ambulance if we attempted some of those moves....I can't lie down for a start and there was alot of laying on the floor involved, crikey is she trying to kill me?!! Think I'll defo be giving the yoga a miss at the mo. So sorry you're worrying about your weird symptoms, what a bunch of medical anomolies we all are! Best of luck to all the wobbly heads out there. Sharon. |
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Hi all, Not been on here for a week. Have had headaches from hell, neck stiffness and shoulders from the same place and feel a bit down to say the least! Not helped by the fact that my hubby and I have decided to sell our house!! What do they say one of the most stressful things in life are - death, divorce and moving home!!!!! We have a nice home, but it is a bit too big for us now and there really is no point in having space which needs cleaning all the time! However, the stress of having to keep it super clean and tidy all the time is just far too exhausting - we are only one week in to all this. To make things worse, because we want to stay in the area we live, we have seen something we like. So now there is the pressure to sell ours fast which to be honest isn't happening these days in this depressed market. Why do I do this to myself?! Also went to hospital to have something called nerve block injections on my neck and back muscles to see if that will help alleviate the tightness and pain. Don't know at present, because it is all so sore. Had about 12. Some feel better, but still know the tightness is there and can feel it is all controlled by my head and balance. Such weird stuff. For me, I think my head would be better if my migraines were more controlled, but cannot get an appointment with the neurologist until May 9th?? No wonder this wretched thing carries on for so long when you have to eliminate each thing with a different specialist until you are left with one or two that you hope are the reasons for not completely recovering, but still can't get to see someone for over 2 months! SCREAM!!! B - ENG is one of the tests that they do to see if there is involuntary eye movement called nystagmus which indicates a vestibular disorder. It is not painful - you are in a darkened room and follow a series of red dots wearing a set of googles that record your eye movement. If you had a vestibular Rehab Therapist in your area they could test this for you without all the need for the machines etc. My VRT physio checked me out by holding my head in her hand and jerking it slightly form left to right and vice versa. They also do the movement to check you don't have Benign Postural Vertigo - lay down and sit up - they then quickly take you down to lying flat and turn your head to the side. Your response indicates if you have this or not - although from what you have said on here I think that is unlikely. Your ENT guy should have sent you for a whole bunch of tests by now including the ENG - or is it because you have to pay individually for each one? Even though I have paid privately for some of my treatment - I cannot think what it would be like to pay for each and everything you have to have done. A cheaper option maybe to get a referral to a VRT physio if there is one in Missoula. This thing is such a nightmare and puts people in the most impossible situations whereby, as I said earlier, having to do your own research and follow everything up at your own expense to find some sort of solution. B- hope you get something sorted. Binx/Wendy you both sound better - long may it continue up that ladder to the "Finish" square!! Ash - haven't had if for a few months, but got that fluttery/jittery stomach and then had to dash to the loo! Also felt panicky. As Binx repeated - it is all to do with the sympathetic nervous system in our bodies which is reacting to all our strange 'off' signals it is receiving. My take on all these effects, is that each part of the body is going through it's own recompensation process and has to work out what is right and wrong again. Another reason why I think for some all our muscles get attacked. Just another theory - full of them - any right though?!!!! Let's all keep united and battle the cause of which we can only win in the end! Love and hugs, Gloria xx |
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Gloria, I'm so very sorry you have been going through so much pain! What a nightmare. Was the nerve block procedure painful too? I really really hope it helps. You don't deserve to have this too. Do you they think you have MAV? I wish I could help you. I just get terrible sinus headaches. I used to have migraines for years, but have not in a few. I hated the aura. Felt like have a stroke. I'd rather skip that and just go straight to the headache. Are you having aura? Would be an additonal lovely touch with all you are going through. I hope you get some relief. When I had them bad I drank a lot of orange juice. I read somewhere that it helps. Who knows. Wouldn't be nice to just go to sleep until its over? I'm thinking positive thoughts for you. My doc just didn't send me for the tests. 16 weeks and I've only had one. Oh well. We'll see how it goes. You take care of you and beat this ugly thing. It's your turn to report in well! Best wishes, B |
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Hi everyone, Gloria, Sorry to hear you have been feeling so bad. It really gets to you after a while, its not often that you sound so down. Your migraines reall y dont help things, really hope you get some relief from it soon. Very stressful moving home, dont envy you. Keeping the house tidy for viewings etc. Good luck with that. Can you believe we used to move about every two years, think i was addicted to it. My friends and family had so many crossings out of our address in their address books. At last we have settled into a house we love. Have been in this one for 5 years now, a record for us! Have you started your job yet. Really wishing you get back on that ladder soon, it will happen, just taking its time, lots of hugs XX B, my girls are 14 and 17, all grown up now, but still demanding in their own way. How old is your daughter? They do keep you going though. Somedays i think i would have not got out of bed if it had not been for them. You sound like you are coping really well without the help of your family. Be proud of yourself. Like i said i have my sister fairly close, the thing is we were brought up to be so independant that i would never ask her for help unless i was desperate, silly really. Hoping better days for you soon. XX Binx, the confidence with driving will come. Its just overcoming that fear. I dont drive as far as i used to, more because of the fear. I find at some junctions when you really have to turn right and strain your neck are the worst. Weird isnt it the things we used to just take for granted. I still get neck stiffness, plays such a big part in labs, if my neck is stiff i know i am going to be slightly off balance, today again have had wobbly legs with it. Great fun. Ashley, hope you are better than last time, especially as you soon want to return to work. Claire, how was your half term, hope you had fun with your friend. Back to the pack lunches and school run this week! Jemma, how are you doing? Have you brought any Lulu Guiness bags recently? I have been good, think may put a few more in e bay before i buy any others to ease the guilt! Take care everyone Wendy xx |
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Hey everyone, Must be contagious! I have been feeling so rough the last few days. Not too sure what triggered it, but do not remember feeling this crappy in awhile. Full ears, light headedness, headache, marshmallow feet. And you know? No matter how many times I fall down the snake, I still cannot get used to these horrid symptoms. Grrrr! Gloria I had a massage last week with a new therapist, and she was so much rougher than my last therapist. Felt sore the day after...thinking now it may have been too much for my body to handle? She worked the back of my neck really hard - kept telling me how tight it was. No kidding!! Anyways, I hope for better days...for all of us! Lucy xo |
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Hello everyone. I swear that if i win the lottery - someone can have every penny for research into this horror. Let me tell you - too much time on the PC sets you back - i am going to limit myself. My legs are made of jelly after a long session - and my eyes don't re-calibrate for ages. 15 mins a day max (evenings) from now on. I can then sleep off the effects. Sharon (uk): I got an ENT referral at 5 weeks into this rubbish. Asked GP - he gave me a form - made the booking (online choose and book system) and was seen by the specialist at Kings Mill 1 week later. Had some basic tests - hearing / dix hallpike / ear pressures etc - took history and gave me a thorough examination. Appointment then made for MRI of inner ear / head - which took place nearly 4 weeks ago. Due to go back shortly for 2nd visit. I have to say - although I have my moments - I am much improved since the first visit - I was ghastly back then - having to prop myself up on valium for the car journey and to get through the noisy hospital waiting room. Wife said i was as 'white as a sheet' when i came out - i said i was 'white as a sheet' before i went in !! What are we on now - week 11/12. Another 4 - 5 weeks should see us clear then ? (LOL) Regarding the driving: most (on this and other forums) indicate that when the worst of the symptoms subside - then you'll probably feel ready to get back behind the wheel. For me it's more of a confidence thing. When labs hit - it took me down in a wave of full blown panic attacks and constant anxiety. Thankfully the panic attacks subsided as the condition levelled out - but some of the anxiety feeling is still hanging around - as my sweaty palms will testify. I have done some driving in the local area when it's quiet - just 10 - 15 mins. One time i went longer (at night) and had the swirlies pop up - this put me off for a couple of days. When the symptoms come - the anxiety follows close behind. Have a look at my post from Feb 27. There's an anxiety website link. Unlike some of the other websites this one has lots of info you don't need to pay for. In fact the guy who operates it - DR Carbonell - got straight back to me when i e-mailed him the other day. On the site there's a booklet section on 'driving anxiety' that you can access / download for free. The techniques he describes can either be used for anxiety or related over to 'what to do if i get the swirlies' whilst driving. I am using the technique he describes to get me behind the wheel again. I fear both the swirlies and the anxiety. Last time out in the car though my pulse never went above 80 b.p.m - that's got to be a good sign. I got myself one of those watches (that runners etc use) from the sports shop to find out how pumped up i was getting when driving - and whether i needed to get a 'quacks' script for some beta blockers etc. Have a look at some of his other info (and vids) on the site - it's worth a look. Labbers from some of the other forums are recommending his approach - that's how i found it. He seems a nice fella and talks a lot of common sense. If i was in the States i might just pay him a visit - or invite him over for supper. Sean: I'm trying to get to that finsh line with you. Neck and neck - all the way in. Gloria: There's a ladder waiting round the next corner - just for you !!!! I certainly know what you mean about that darn neck though !! Stay safe everyone ! BINX1965 |
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Hi all Wendy I meant to respond to you earlier about my bags. I got them from various places, the Lulu Guinness website, Selfridges, ASOS and Handbags & Gladrags online shop. They are addictive aren't they! I did sell one on ebay recently, to ease the guilt as you say. I have bought quite a lot of clothes recently so must rein it in!! We have just emptied our loft and I have thrown 5 bags of old clothes on the tip. Seems a shame but I never wear them and have so much stuff. Needless to say my boyfriend did most of the lifting but even just a bit of sorting etc really tires me out. This thing just takes up so much of our body's energy doesn't it. I have been up and down. Had a few bad weeks with fatigue. This week has been a bit better. Balance is variable, sometimes reasonable other times more swirly. Even though I am not usually really dizzy, I often have this funny feeling in my head/brain as if the left side in particular is not connecting properly. Its hard to describe but I'm sure others on here can relate. Gloria sorry you are feeling rough and just when you were going to start work as well. I always find that if I plan to do something requiring more energy or more testing than normal then my symptoms will ramp up - its so frustrating isnt it. Overall my neck and muscles have been a bit better over the last couple of months. I did look at nerve block treatment when it was really bad. How did you get it? Was it from your GP? Do let us know how it works out... Good luck also with selling your house. As you say the market is so dead at the moment. We would love to move to something a bit bigger but it is impossible to get a mortgage so we will proabably have to wait a few years. We did get two new hens though - Mabel and Henny Penny!!! Sue so glad you feel you are pretty much over this. After 5 years you do deserve a full recovery I think! I do hope it continues and you don't have any more relapse. Keep us posted xx Sharon I was really interested in your post. Can so relate to all your symptoms and when you said about the visit to the stately home. I visited one about a month into labs when I was desperately trying to get myself ready to return to work. It was awful. My head was so off balance, the rooms were crooked so you can imagine how it felt. Even though I didn't have vertigo spinning I really felt so bad. I did visit another stately home a year later and it was a lot better although still not 'normal'. I hope one day it will be and for you too! B as Gloria says this thing does put people in such an awful position because not only have you got the hardships of a chronic illness and everyhting that brings with it but you don't get any help from the professionals until you have a diagnosis and that is a lot easier said than done. Don't be scared of the tests though, none of them are that bad and are well worth the peace of mind of knowing more about what is wrong. Binx keep us all going with your amusing posts. Hope you keep improving and you too Sean! Donna have you started your job yet? Let us know how you go on. Claire and Ashley - hope you are both on the up? Love to all Jemma xxx |
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Hi all Well apart from the neck pain I have been doing a bit better; well I was until last night anyway! Yesterday I travelled as a passenger on a two hour journey to Newcastle, carried out some viewings on one of my boyfriends properties then I drove all the way back. Came home and did all house chores etc. I sat down at 10pm and thought how proud I was of getting through a hectic day, then all over a sudden my head went really tight and felt really strange and dizzy for about 10 seconds. Instantly I went into panic; my stomach flipped and flipped and I started burning up. I just don't understand were this brief episode came from. Haven't really experienced it before. Have any of you guys? Now I'm back to my panicky self today not wanting to move much incase it happens again, but I know I should just carry on. Binx - I avoided driving for around 5 months after having a bad experience on the motorway but my consultant said I had to push myself to do it. I started driving locally just b4 Xmas but only at quiet times then I built it up. I have to spend hours on the motorway with my job so I started pushing myself to go on the motorway when I am accompanied by someone. Just stay with it, your confidence does return. A few months ago I would never have done a 2 hour drive to Newcastle with no break. Jemma- I see Nova tomorrow. I will let you know how it goes. I spoke to her on the phone for about 30 minutes and she really filled me with hope. She is that informative about VRT that the hospital she works for are now sending patients straight to her instead of an ent consultant because she has such a good success rate! She has just cured an 80 year old with balance problems! It is 50 pounds a session but if she makes me better then I don't care, it will be money well spent! Lol! She said she gets so frustrated when young people have not been cured of it within 6 months. She said as long as you do not have a history of anxiety, depression, head injury or migraines then there is no reason why you should not see significant improvement ( or even be cured) within 3 months of vrt as long as you do it properly and stick with it. I'm keeping everything crossed! Some tips that she gave over the phone were: - everyone you are on the toilet or waiting for the kettle to boil, do 5 head movements. - walk, walk and walk some more! Everytime you pass a lamp post stop and look left then right. - talk to people with your head turned to the side which has been effected by the virus. So if it's the right get them to sit or stand to your right. - don't sit facing the tv. Watch it with your head turned to your effected |
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Hi all Well apart from the neck pain I have been doing a bit better; well I was until last night anyway! Yesterday I travelled as a passenger on a two hour journey to Newcastle, carried out some viewings on one of my boyfriends properties then I drove all the way back. Came home and did all house chores etc. I sat down at 10pm and thought how proud I was of getting through a hectic day, then all over a sudden my head went really tight and felt really strange and dizzy for about 10 seconds. Instantly I went into panic; my stomach flipped and flipped and I started burning up. I just don't understand were this brief episode came from. Haven't really experienced it before. Have any of you guys? Now I'm back to my panicky self today not wanting to move much incase it happens again, but I know I should just carry on. Binx - I avoided driving for around 5 months after having a bad experience on the motorway but my consultant said I had to push myself to do it. I started driving locally just b4 Xmas but only at quiet times then I built it up. I have to spend hours on the motorway with my job so I started pushing myself to go on the motorway when I am accompanied by someone. Just stay with it, your confidence does return. A few months ago I would never have done a 2 hour drive to Newcastle with no break. Jemma- I see Nova tomorrow. I will let you know how it goes. I spoke to her on the phone for about 30 minutes and she really filled me with hope. She is that informative about VRT that the hospital she works for are now sending patients straight to her instead of an ent consultant because she has such a good success rate! She has just cured an 80 year old with balance problems! It is 50 pounds a session but if she makes me better then I don't care, it will be money well spent! Lol! She said she gets so frustrated when young people have not been cured of it within 6 months. She said as long as you do not have a history of anxiety, depression, head injury or migraines then there is no reason why you should not see significant improvement ( or even be cured) within 3 months of vrt as long as you do it properly and stick with it. I'm keeping everything crossed! Some tips that she gave over the phone were: - everyone you are on the toilet or waiting for the kettle to boil, do 5 head movements. - walk, walk and walk some more! Everytime you pass a lamp post stop and look left then right. - talk to people with your head turned to the side which has been effected by the virus. So if it's the right get them to sit or stand to your right. - don't sit facing the tv. Watch it with your head turned to your effected |
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Sorry I pressed post by mistake, I am using my iPhone! Obviously my sentence was supposed to end effected side! I will post any other info she gives me tomorrow. Take care all xx Ash xx |
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Gloria: Just to let you know i am going to give the Kalms pills a whirl. The active ingredient is valerian (which i know you take) so hopefully this will 'knock down' some of the anxiety related baggage i still have hanging around. I really DO think it's the latent anxiety that's holding me back. In any case - it's got to be better than reaching for the valium when things get bad ! Valerian was the natural valium of it's day - that will do for me. At least no nasty side effects and withdrawals to look forward to. Hope you have got a foot on the ladder again. Ashley: The symptoms you describe in your last post are similar to others i have read on here. Think Shirley at the top of page 13. Hope it was just a blip. If anyone wants a laugh - on the doctors Q&A page in todays Daily Mirror (newspaper) someone asked a question about labyrinthitis. He responded by saying it clears up in 3-4 days. What a joker !!!! He needs to experience it first hand !!! Always remember - don't feed the bad wolf ! Stay safe, BINX1965
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Hello, I found out about this website from Emma and Islas guestbook. It is comforting to know that other people are going through the same thing and I can only sympathise with many of you especially those who have been suffering with this from a number of years. I am a 25 year female I work in London but since being dizzy have moved back to my parents house in Newcastle. The dizziness started in mid-December - at first I just brushed it off as having a bad head cold and I was determined to enjoy the festive period and having some time off work. But it quickly became obvious that it wasnt something I could ignore. I am now on week 11 of being dizzy and mainly have the following symptoms: - No problems sleeping - I feel ok when I first wake up, but then after 30minutes or so the dizziness kicks in and I remain dizzy for the rest of the day - The dizziness gets worse as the day goes on and is particularly bad late at night when I get tired - Jelly legs I feel like I am floating when I walk anywhere especially outside - Symptoms worsen is busy/crowded environment (going to a supermarket is not an option at the minute) - Problems focussing especially looking at text on a computer screen - Eyes hurt when looking at bright light, or even going outside. - Occasional ringing in the ear/temporarily blocked ear - Muscle spasms especially in my legs - Muscular aches and pains including my jaw - Ticking noise in my head when walking quickly or walking down stairs (I am not sure if this noise is coming from my head or inner ear?!) - Generally exhausted - Loss of confidence and currently a non existence social life due to my inability to get out an about - The only time I feel semi-normal is when I travel as a passenger in a car Apologies for sharing all of that and I know I have been very lucky as I have not had any nausea or sickness. I have also had a couple of days break from the dizziness and I even managed to returned to return to work but unfortunately I picked up a cold virus and the dizziness returned with it. I am seeing an ENT specialist on 15th March and I really hoping for some answers I am also hoping that he will be able to put my mind at rest that there nothing sinister is going on. (Lab is sinister enough!) I have read that doing some head/eye exercises can help and I was just wondering I anyone could recommend a website that demonstrates these exercises? If my trip to the ENT doctor proves unsuccessful, I was also wondering if anyone could recommend a good specialist in the UK? And finally has anyone got any good coping mechanisms? Has physiotherapy or balance classes helped anyone? I am really trying to remain positive and willing to try different things to improve my current symptoms. Any advice or help would be much appreciated. And if I find any answers, I will be more than happy to share Thanks in advance, Janette xx |
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Hi all, Have just written loads and then it all disappeared - AAARRRRGH!!!!! Thank you all for your kind words of comfort and support. That is why this site is so wonderful. Well, the injections have eased the back (slightly) but have made my neck so sore and as for my head - it has gone into overdrive - tight and odd. I recall being told by a VRT physio that if anything changes muscle tension - the balance mechanism will react. Maybe why you didn't feel too good after your massage Lucy. Sue - absolutely thrilled to hear you are feeling tons better. May it last forever. xx B - It is only when I reached that dreaded middle age that I started to get aura - not all the time. When it happened at first I thought I had lost my sight. Just hoping the neuro guy in may maybe able to shed some light to help this nightmare. Thank you for your good wishes too. Binx - am suffering the old anxiety thing again with this blip. Wobbly legs, upset tummy etc for me. I will look at that website. Thanks for posting the link. Ash - will be interested to hear what your VRT physio suggests. At the beginning I went to see a private person - she was great, but at £85 and hour every week - I couldn't afford to carry on. We have a cycle path near where we live through some parkland. it is quite quiet, so now and then I go for a walk and practise my VRT with my eyes closed. I veer right off into the scrubland. The other day, when I opened my eyes a lady came over and asked if I was OK - swear she thought I was a drunk!! Do let us know how you get on - good luck. BTW, your brief episode of dizziness I suspect was a reaction to a long car journey and then doing a bit too much when you got home. I have had that - tells me I am doing too much. Sharon - hope 'Bob' is behaving himself! I have tried to think of a nickname for mine but always come up with something quite unprintable!! Jemma - your hens sound lovely - great names! How did you get into keeping hens? Well, like you I am also having to sort our loft out if we are to move fairly clutter free!! Why do we keep so much stuff? Looking at all my lot of stuff - I did think if I hadn't bought it how rich I'd be now LOL!!!! Up the ladder for you soon Jemma - no more blips. Wendy/Lucy - thinking of you and hope any blips will be short lived for you too. Claire - if you are looking in - hope your visits to friends was great fun and you felt OK - did think of you. Keeping the faith!! Love and hugs, Gloria xx |
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Gloria, i am looking in, just havent felt like posting!! :( I had a really lovely weekend Thank you it went really well I felt mostly okay & I drank rather alot of wine (maybe that was why!!) Then the day I travelled back it started now I am on a slippery snake & feel a little low. Try so hard to be positive but not easy is it? when you just cant see a way out. Sounds like you too are having a tough time at the moment, so not fair!! x I am still doing the VRT even when I was away I too have walked with my eyes closed & like Ashley was told I also close my eyes & turn my head at random times, I always brush my teeth with my eyes closed too (another of my therpaists tips) so why isnt it damn well working!!!! Thats why I havent posted dont like to be negative especially for the sake of the 'newbies' Hey Ho will try to be positive again. My Eldest daughter is 13 next week That makes me feel strangely sad. On the upside i am off for a very lovely day out next Friday to The Ritz for afternoon tea & 1st class train travel with a friend. I WILL have a lovely day & WILL NOT let this 'thing' get in my way. Wendy I am back to the normal chaos of school runs packed lunches etc!! roll on Easter hols :)x Jemma nice to hear from you on here love your bag addiction :) hope you are okay x so many other suffering hope you are all coping. Ash I still have these print outs for you but sounds like you are getting sorted, lots of luck x Love to you all Claire x |
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Dear all, won't write I feel better again,as since saying that, the swirly head has come back and had the worst migraine today. Saying that I do feel generally better, I still think it might be my age. I am hoping to return to work soon, I'm not sure it's Quite the right time, but I could be waiting forever to feel 100%.I read everyones posts with interest and also real frustration, we all seem to be on a go slow as far as this illness is concerned, and as we know research or interest into this seems to be very limited, I agree I'd certainly fund some research if I won the lottery. Binx, just about to look at the anxiety link you posted, anything is worth trying, good look with your driving. Gloria, sorry to hear you're not well, moving house is so stressful. Ashley, goodluck with the VRT, fingers crossed for a cure. Claire, Jemma,Sharon,Wendy,Lucy and everyone else, wishing you all a better dizzy free time. Love Sue xx |
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Hi everyone, So I am still feeling the effects of this latest blip. Trying desperately to think of what I may have done, if anything, to aggravate my progress. Honestly, this illness really is the pits. The anxiety has kicked in too. Just thinking that in January I seemed to be on such a positive road. Does anyone get super sensitive hearing when in their blips? Especially when I am going to bed. Any sudden noise puts me in such a state! And I am back to three pillows...laying flat is not feeling too hot these days. Binx I laughed reading your post about the Q & A in the paper. 3 to 4 days?? Unbelievable! It never ceases to amaze me just how little is known about the inner ear. These docs should be ashamed of themselves! Oh, and in terms of driving, it took me a good few months before I felt confident enough. I started out taking little drives up and down the street. Neighbours must have wondered what the heck I was up to! Then progressed to longer drives when I knew the roads would not be too busy. I sometimes do not feel comfortable driving now when my blips hit...and I am not crazy about night driving yet either. Thinking it may be an anxiety thing, but there is so much glare and shimmer...a bit of a sensory overload. Ashley I really enjoyed your tips from the therapist. I think I will try doing more things just on the spot like that...when I wash dishes, brushing my teeth. Anything to try and push this darn thing away! I do a lot of walking and running, but because it is so cold out, I am on the treadmill. Did your therapist say this is ok too? Gloria Your poor neck! Glad to hear that it is a bit better after the injections. Oh yes, I know what you mean about the tight head feeling. I get that a lot with my headaches. Weird stuff, and so hard to explain. I sometimes take an Advil just to see if the pressure subsides...and sometimes it does. I have been known to wrap ice in a towel and place it on my head to kinda numb the pressure. Not for too long though...I imagine it is not very good to have something that cold on your skull. Claire Nice to hear from you! You enjoy your lovely tea day!! I heard myself screaming that same line in my head as I was on the treadmill this morning. I will NOT let this thing bring me down!! I just hope my toughness lasts! Lucy xo |
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Hello to all fellow dizzies, Sharon - you are mirroring some of my symptoms at the beginning of all this. I couldn't even get off the couch for around 8 weeks as I was getting the spinning and swirly head, even sitting still I would suddenly get hit by the rotationary vertigo. I never left the house for about 3 months because as soon as I opened the front door the outside world would literally smack me in the face and my anxiety was sky high. For me I argued with the ENT doc that said I had BPPV as well as labs but I know now that they were right. They performed the eply on me back in the summer but didn't do it properly, according to my lovely new physio, this is the reason I have still not fully compensated and need to have it done again. But even though it wasn't performed properly it did kind of stop most of the spinning. I have been doing the Brandt Dorrof exercises and they have definately been beneficial. If you want to look them up there are plenty of videos on youtube showing how its done. You might want to give them a try - if you experience the rotational vertigo on laying down on your bad side then it is possible that you do have BPPV. By the way - love the fact you have named your labs Bob, like Gloria I can think of a few names to call mine but all of which are definately unprintable - ha. Claire - So pleased that you had a great time with your friend. I have a girly weekend booked at the end of July to Brighton - bit scared of going but then again don't want to let this thing stop me. After a few drinks probably wont notice it anyway - ha. Ash - so interested in what you were told by your physio. I am going to start tomorrow with the head turning when boiling the kettle, etc. Please let us know what other exercises she gives you as need to beat this thing now - had it far too long. Gloria - that blooming snake needs to be stamped on !! Hoping you start to feel better soon xx Binx - thanks for posting the info on driving - I still suffer from the visual stuff which makes it hard for me to drive long distances. I can manage a shortish distance, but go any further and I experience the woozy headed feeling - I know this is not anxiety as I dont feel anxious anymore. I know that if I do get dizzy I can just pull over and wait it out, which I have had to do on a couple of occassions - the physio explained to me that my balance system is relying too heavily on my eyes and to do more VRT with my eyes closed. Well been doing them but no change - ha !! Sue - thank you so much for posting your success story - it gives me such hope. I really hope this is it for you now. Jemma/Wendy and everyone else hope you're all ok. Quick update on me: Had a couple of days last week where I was 100% - never hit that mark before, but as usual (sorry to say) I slipped back downwards again. I am going back to the physio on Wednesday and hopefully she will perform the eply again on me and get rid of the remaining loose chrystals. Hopefully then onwards and upwards with the VRT and get this damn stupid brain of mine to start compensating!! Love and hugs to all Shirley x |
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okay so today i just started driving again, i drove around for about thirty min came home, and i noticed that it did make me a little dizzy/drowsy. but i will keep taking small steps at a time untill my head gets use to it!! other than that i'm still improving... but i do have my feeling off days. my best friend right now is a good night sleep lol jk but seriously sleep is AMAZING!!! i'm glad to see everyone posting, and keeping up with how they feel!!! good luck, and god power to all peace, and love Sean |
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Hello everyone, Big laugh coming your way ! Just got back from second ENT appointment. A reminder of the test i've had done. ECG - OK Blood Tests (Thyroid / Diabetes / General Stuff) - OK General Hearing Test - OK Ear Pressure Test - OK Dix Hallpike - OK Brain / Vestibular (MRI) - No tumours in there - in fact no brain in there ! Conclusion It's back to your GP as we can find nothing seriously wrong with you. It could be migraine related or whatever. There's no virus as inner ear virus symptoms only last a week or so. What ? My current symptom review: Tinittus (both ears) - Really bad in the morning - eases during day. Pain in both ears (moderate) Ear drums seem sensitive to cold Regular sore throats Vertigo - bad when triggered via typical swirly triggers Head - goes between feeling heavy / light Neck - constant pain Leg - one leg seems longer than other Headaches - moderate / severe Cannot tolerate noise Eyes - words jump around on page when reading. Prolonged (more than 20 mins) PC use brings on swirly feeling. Generally though eyes are good now Can't drive - as swirly trigger + anxiety Raging fatigue General anxiety type rubbish Thought you might like that. There will be an interesting conversation in my docs office on Monday morning - can't wait !!! All i am glad of is that my symptoms are now considerably reduced from 6 weeks ago. Bsck to work asap. Stay safe, BINX1965
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Hi All, I too seem to be getting headaches at the moment with this, have always suffered with sinus but just feels like a tightness around my head. Went for long walk this morn and lucky were not too many people around and closed my eyes whilst walking! Was walking along the river walk, which is nice and straight, but did take my arm bands just in case fell in!! Ashley, thanks for the tips on the head turning etc. Have been good and fitted them into times when waiting for the kettle to boil etc. Hope your session went well today. Well done on the driving though, bet you wouldnt have considered that a few months ago. Claire, nice that you had a good time with your friend, sorry to hear you have had a bad spell since, do you think its punishment for actually to trying to live a "normal" live once in a while. Hope you enjoyed your tea at the Ritz. Jemma, congratulations on the two new additions to your family, Mabel and Henny Penny. Must be lovely to keep hens. I suffer with fatigue with this as well. Mine tends to really come on around 4PM like a big wave of tiredness, acheyness and just a feeling of wanting to curl up. I suppose we wear our bodies out just trying to stay balanced. Gloria, hope things are a bit better with you, did the injections help with anything. Have you had any viewings on your house. So hard to keep everything tidy for them. Have you started your job at the salon yet. Sue, it was good to hear that are seeing an improvement, although when you say that it does seem to tempt fate and it all comes back again. You have suffered for such a long time with this i really hope you are near the finishing line with it. Good luck in going back to work. Like you say is there a day when we can ever say i am 100%. Fingers crossed for you. Shirley, its great that you had a couple of days that you felt 100%. What a lovely feeling that must have been. Its sounds like you are also seeing the back of this thing. I had the vertigo at the start of this, i think it is one of the scariest things you could ever experience. Hope the eply manoevere does the trick. Lucy, i also get very sensitive hearing with this. Some noises, not even loud ones, i just have to put my hands over my ears. I am just weaning of my third pillow and trying the two again, as i found i had such a stiff neck with three, would love to lay flat again. Someone i knew had this and it took her 6 years before she could lay flat!! Only another 4 and 3/4 to go. To B, Binx and Sharon, hoping things are good with you. I like your name Bob, i just call mine "the thing" when i talk about it, sometimes i call it an alien in my head, coz of all the weird stuff it does to us. Hoping everyone has a good weekend. Love Wendy XX
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Hi Guys, I havent posted in a long time, and I am doing alot better.. I am actually nervous writing this, because I never try to jinx it... I think this is a lifetime thing... I run alot... and I think this is doing me the most benefit. Sorry if this is vague.. I hate to say anything about how I am doing.. I never want to go back to that hell, so even if it is silly, I will do it hehehe... Anyway, I heard about this thing called zyvestra on the radio.. I looked it up.. Just wondering if anyone has tried it or looking at it... And if you havent, I wonder if it works.. If it does, It would be amazing.. |
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Hello Janette........So sorry you have had to look this site up because you are poorly with Labs. There are so many young people on this site suffering with this hideous thing. Awful- when you should be out there socialising and having fun. Like you I also had to move back in with my parents for the first 4 weeks of this illness, despite having a wonderful partner at home and being 48 years old!!!! (abit old to still need looking after by my mum). My partner was unable to take the time off from work. I literally couldn't even do my 'toilet duties' without assistance so needed someone around all the time. Believe me Janette everyone on this site can relate to what you are saying and you are most certainly not alone. Alot of the people on this site were initially 'knocked off their feet' by this illness and all are continuing to battle with many of the frustrating, debilitating and very frightening symptoms,many which, from reading your post, you are experiencing yourself. You started with your Labs at the same time as Binx and I-mid December. When you read Binx post's you will see he has received some treatments, I intend to push my GP on weds to refer me for some specialist help as so far I have had no treatments.You will see that many of the others Labbies on here talk about VRT. That is vestibular rehabilitation therapy ( I hope I spelt that correctly). I only know about it from the guys on here, Gloria explained it to me when I first posted. If you do an internet search re-Labs there are some videos out there you'll come across of people demonstrating some of the VRT excersizes,the theory is that the VRT helps to retrain the brain to compensate for the damage sustained by the inner ear and improve your ability to balance. You do have to stick at them and recovery does not,sadly, happen overnight. You will get lots of advice and support on here and people will always respond to posts. Try not to despair, it can be such a terrifying illness and it is not helpful or indeed reassuring when everyone you talk to about your illness has never even heard of it. You will find that others on here are really informative and supportive so keep on posting. Also, if you suffer any new symptom you are concerned about put a post on here and someone is bound to respond with some reassuring info. Best wishes to you! sharon |
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Gloria......was just reading your last post, so sorry to hear how your injections have had such a horrid affect on your head and neck, hoping it calms down soon!! I checked out the anxiety website Binx mentioned, found it to be really informative, some good stuff on there about panic attacks and a video demonstrating 'Belly Breathing',(not as straight forward as it sounds and takes abit of getting used to). I had to smile when I read in your post about your public wobble and your concern that the lady who asked if you were ok may have thought you were drunk, think we all definately need to get those T-shirts printed "Legless with Labs not Lager"! 'Bob' is being very disruptive today, wish I could send him to the naughty step, or spare room even, for a while- no chance of that though. He sent me on a spinney when I looked down to get some shopping out of the boot of my dads car, everything started to spin and I fell face first into the boot with dad grappling to catch my arm to steady me - horrid, but sounds hilarious!! Poor dad! Felt rotten afterwards and then went deaf in my right ear ( worryingly my unaffected side)- weird. As always with this illness it occasionally hits us with strange symptoms out of the blue! Hope your neck and head feel better soon. Sue.....Great to read that you are managing to go back to work,you give me hope that maybe I will eventually go back too, not sure what sort of environment you work in but you might want to check out a recent post Binx put on here about fluorescent lighting - some really good advice there. Hope all goes well with your job and keep us posted how you get on. Lucy.....It's weird these 'blips', much like the illness itself, there doesn't seem to be an explaination or reason for why we got hit with it in the first place or what on earth it is that we do which causes the sudden 'blips'- mostly we have done nothing!!! When I say to the Doc that I can be fine for a while and then 'BANG' for no reason I have a horrid day of giddiness and symptoms, the Doc puts his hands in the air and says 'it's all just part of the illness, you've just got to wait for it to go off!' Not very reassuring I must say! I'm sorry your struggling with it and hope you start climbing back up the ladder soon. |
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Hello Janette, Must have been something floating around the UK in mid Dec 10. You will gather from the previous posts that's about the time myself and Sharon (uk) were knobbled by this mystery illness. Since falling foul - I have spent many a happy 15 mins trawling the net in search of answers - my doc and the ENT specialist don't have any. lol. Apart from the fact (now confirmed) that i don't have a brain tumor or anything serious. lol. Back to my GP on monday for a referral to the neuro. I know it's a long shot and you may well have labs or something similar - but the 'jaw pain' and 'clicking / ticking' you mention draws me to ask a quick question. Have you had any dental work done recently ?? If the answer is YES - please seach the internet for 'TMJ problems'. Jaw and bite alignment problems can cause symptoms similar to labs - this can often get missed early on as people tend to focus on the worst symptoms (like i can't stand up / or the world keeps spinning) when seeing the doctor. If you feel the dental stuff is not an issue - then stick with this site - you're in the right place for some help, advice and support. Everyone here has experienced your symptoms in one form or another and knows exactly what you're going through. Sharon (uk): I sense you are slightly on the up ? Stay safe, BINX1965 |
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Binx.... oh no!!!! What a complete waste of time that ENT appointment was then! I think you have just demonstrated in absolute detail how utterly uninformed the so called professionals are about this illness. Thank heavens though that they didn't find anything gruesome but it's so utterly frustrating that there is a total lack of knowledge out there about Labs, why won't anyone listen properly to us, this website proves this illness exsists and has a huge impact on the lives of it's sufferers, there are too many of us experiencing this for it to be a figment of our imaginations!!! As for an inner ear virus clearing up within a week-- don't even get me started on that one!! ARRGGGHHHHH!!!! Best of luck for your GP appointment Monday, let us know how it goes. |
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Hey everyone! Did you all read Sams post from earlier today re- ZYVESTRA. Do a Google search, it's really interesting, think I'm defo going to be ordering some of that. Check it out!! |
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Have had a decent couple of days. I hope not to jinx it!!!! We did a lot of running around today and it was hard on me at times, but I finished all that needed to be done. We even went out to eat, twice!! We were gone all day long. It was impressive for me!! I've been sitting against the shiatsu massager chair to limber up the horribly tight muscles and I find that doing that enough keeps the dizzies low!! This could be just a coincidence!!! Those muscles get so dang tight and it seems like it brings everything crashing down. I use tiger balm, ice, and heating pads too! Maybe it works, maybe it doesn't. That is the tale I'm telling today!! Janette, sorry. This is a great resource and I hope you find some comforts here. I wish you a very speedy recovery, they are not unheard of!! Gloria, I hope your headaches are at bay. A headache makes this all so much worse. I'm thinking the good thoughts for you!! Have you started your job yet? Let us know how it goes! Binx, I'd rather have a GP I think. My ENT has lacked compassion and knowledge through this whole thing. This is outside their speciality I guess. Lucy, I have sloshy ears in the morning (feels like there is liquid in them) and noise seems to bounce off of it and makes it louder and crackle at the same time. I can't do noise or lights in the morning. I think your massage may really have had an effect on your relapse. I think your masseuse needs to take it slow on your neck. I hope you are feeling better. Claire, I am inspired that you are able to drink a little. I miss the good ol occational cocktail!! I'm still scared, but now have hope! I miss lunch with the girls where we have too many cocktails and laugh way too much. I cannot imagine doing that right now. I hope your ickies didn't last too long. Glad you had fun! Wendy, don't fall in the river!! Headaches are awful. We will win. I always recommend orange juice. It works a little for me. I take IBU like crazy. So glad that was invented. Take care. Ashley, after a long day I get woozy and feel very out of it. It is unpleasant and I have to fight the panic reflex. I usually turn the lights off and lay down. It helps some. I think it was great what you got done and how well it went. I also hope the feeling didn't last long. I hope you have many more good days. Jemma, Sharon, and whoever I missed, it is very late and I must get to bed. I am thinking of you all and wishing the best of health. Lets all have good days!! Thank you for being here to listen! B |
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Just a quick one to welcome Janette, i am sorry i missed your post earlier. So sorry you are also suffering with this horrible illness. I sympathise with you being so young, there are also a couple of other girls around your age on here, i think it must be tough on you with work and socialising etc, not that i am passed it at 45, but a bit easier for me. I dont blame you for not working at the moment. I used to work in the City of London, very hectic what with the commute and the general fast pace of work there. There is no way i could have coped with labs and that. You take as much time of as you need. How did your virus start, was it after a cold? I hope you get some joy from your appointment with ENT. Trying not to be negative, but because my hearing test seemed to be fine, and i could walk in a fairly straight line, i was more or less dismissed. I have had this for just over a year now, but each persons recovery is different. You will find that you will see and improvement, but sometimes it feels slow and frustrating I really hope that your symptoms start to improve, i think walking really helps. Some shop lighting still really affects me and sends me off balance. The one good thing is we know we have to recover one day fully from this illness, an answer as to when would be good. Some of the others like Gloria give good tips for VRT, think they are worth trying, you can find them on some of her earlier posts. Anyway you look after yourself, and anytime you feel frustrated just rant on here because we are all in the same boat! Love from Wendy XX |
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Happy New Year Everyone! It's been a while since I stopped in here. I noticed a couple of newcomers...unfortunately new sufferers. I just want to update everyone on my recovery.. not any better. It seems as if I'm better with one symptom then I develop a new one. I started having extreme tiredness and tingling/numbness of my arms and legs. Does anyone have this experience? I was having tremors on my hands for 3 days. I don't notice them now but the numbness in arms and legs are still there... Every provider I see links it to anxiety, which I still deny because I'm already on sertraline. I finally decided to take the anxiety pill 3 months ago because I was desperate for a relief and still have the dizziness, short of breath, ear ache, ear fullness...you name it. And now the tingling and numbness in arms and legs. I recently saw a provider about 3 days ago and mentioned that I'm concern about the possiblity of MS.... She thought that since my Vitamin D level was still low, I should just take a supplement of 4000IU daily for a few weeks and see if that helps.. My physical exam done by her does not warrant any worriness towards MS. She said my ears looked fine.. To me, it's almost as if they ignore my symptoms because they don't know what it is. I've made the 7-month mark a few days ago. My baby is now 8 months and doing the army crawl now...I'm just so pooped that somedays, I'll just take catnaps and leave my kids playing by themselves. I feel so bad by doing that. I hope everyone else is not developing new symptoms and that all of you are continuing to recovery..quickly. Please take care everyone. kia |
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Hello, Many thanks for getting back to me I really appreciate it. Sharon and Binx I am sorry to hear that you have been suffering from this since mid-december too. My GP told me that he has a few dizzy patients at the moment so it is possible that there might have been something going around and that we were just the unlucky ones. Sharon I am sorry to hear that you have not yet had any treatment or been referred I am beginning to think you really have to push some doctors to get the attention and treatment you require. Good luck with it! Have your symptoms improved at all in the past 3 months? Binx It must be so frustrating that your ENT doctor was far from helpful, what are the next steps that you will have to take? I hope your GP can offer some solutions. Thanks for telling me about TMJ problems I have not had any dental work done but I did go through a period of time when my jaw clicked quite a bit so I am willing to consider or look into anything that will help alleviate the dizziness. The doctor did some blood tests and picked up that I have high levels of thyroid stimulating hormone and low levels of FSH and LH so I have also been referred to an endocrine specialist. My doctor still thinks I have labs and that these hormone imbalances are secondary.. Im 25 and feel like Im falling apart! Fingers crossed we all get some answers soon xx |
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Hi all Just a quick one to welcome Janette to the site. Not that anyone wants to have to be here if it means having this condition but it is such a psychological help to speak to people with the same symptoms. Janette i am 29 and have had this 23 months, I have improved but not 100% and have better and worse days. I get clicking sounds which I thought could be my jaw but it is acutally the SCM muscle i think, which is the large muscle running up the neck and adjoining the ears. It means that when i move my jaw i hear crunching in my ears. It started about 4 months into this. Kia and Sam remember your posts from a while back. Sam glad you are oing much better, how long have you had this now? Kia you are doing well coping with children and I am sure you will improve. For some people 7 months is not that long but I am sure you will see big improvements eventually. Sharon let us know if you try the Zyvestra and what it does... Claire, wow the Ritz. It has been a secret ambition of mine to go there and stay a night (dont think i can afford it!) hope you enjoy your afternoon tea!! Gloria - I got into hen keeping because my boyfriend loves hens and wanted to get some. We have 6 hens altogether now but one of them has been realy ill this week and we are very worried she wont make it. She is in a box in the house and we are nursing her but concerned she seems so tired and weak. They are like our little babies! Ash - so glad you found that contact useful and have spoken to Nova Mullins. She seemed really knowledgeable when i spoke to her but it was quite far for me to travel to see her and i dont do motorways. How far away from her are you? Please let us know any info and exercises she suggests, it would be really useful. Hope you are feeling ok and the appt went well? Love to all Jemma xxx |
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Gloria, You've had this for so long and they only just figured out it was your neck!! Damn doctors! As for some of you on here know me and my story, I won't repeat. Gloria, my neck was what put me into the rotten world of labs! You need to see a physical therapist asap. Get your neck and trap muscles strengthened and aligned (not a chiro). As Jemma said in an earlier post that her head felt odd. The only residual symptom that I have is a bit of a swirly head when it is going to rain or snow or it is that time of the month. I feel lightheaded and I can't seem to focus. Sort of like brain fuzz. One day it was so bad that I did have a moment of panic. Then as I was reaching for the Xanax, I calmed myself down by remembering that I am 2 years into this or on a positive note 2 years out of this now!! It will pass and I will be fine. You all WILL recover. However, it will be an up and down battle for many of you. I'm sorry I can't remember who, but they mentioned above that they did a lot in a day and went home so proud and then had a moment of dizzies. Totally normal!! Your vestibular system sat down for the first time that day and said "Hey, wait one minute!" "I'm not ready to sit down yet!" Basically your vestibular system has to catch up with your mind and how you feel. So if you sit and it is used to moving, you will feel off and dizzy until you can rest for a while. Remember that it takes an entire year for a nerve to fully heal. This will take time and patience! Enjoy every moment you have that is a good one and remember to stay as positive as you can during the rough times. This too shall pass! Ok I'm going to leave all of you with my mantra: KEEP THE FAITH!!!!!!!!!! Melissa |
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Wendny and Jemma - thanks for your warm welcome. Its true that London is not the best place to be when you are feeling unwell - I have not been on a tube since the dizziness started (which is pretty impressive for me.) I am actually heading back to the capital tomorrow - as I have an interview on Tuesday. My job (like many other public sector workers) is coming to an end on 31st March and I torn between getting better and thinking about my future. The dizziness really came out of nowhere.. I remember feeling really tired and light-headed and it took a while to put my finger on it being 'dizzy.' I thought I was coming down with a head cold but it never materialised. The dizziness cleared up about 8 weeks but then I picked up a horrible cold/flu virus and it came back with a vengeance! Jemma - sorry to hear that you have had this for so long. Is there anything that you think has helped your symptoms improve or is it just the passing of time? Could doctors do anything for your SCM muscle? The ticking I have seems to be coming from my forehead.. I only hear it when I walk quickly or walk downstairs.. sounds like something is moving around in my hard! Very strange and a bit scary Wendy - it must have been really frustrating that the ENT doctor could not help you. Have you been to see any other specialists or get any further forward with your diagnoses? I will keep my fingers crossed that every day brings improvement for us all xx |
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Would love to join this site, had labs 5years ago which got to a manageable level, just returned prior to Christmas, still in not nice stage! but not as bad as the first time round 5 years ago |
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Hi All, I haven't posted since around Christmas and I'm sorry to see a lot of the same old faces ( Jemma, Gloria, Claire, Kia ect) are still suffering. I really hope you all recover fully really soon, my thoughts are with you. To all the newcomers, it sucks you have this condition, it's truly such a horrible way to feel but this site is fantastic for the support it can give -so, welcome. I first came down with tinnitus and ear pain last May, and then the vertigo started one month later. In all, I was dizzy for about 5 months, (not long I know for most on this message board) but I started having very dramatic improvement about 3 months in when I started taking flunarizine ( a relative drug of cinnarizine). I believe it is what helped me get better so relatively quickly. I was worried the whole time about Lyme disease because I had been having very odd symptoms for a long time and at one point two years earlier fell very ill to an "unknown virus" which is when all my health troubles really started. Thanks to Brad and Chuck who posted on this board about Lyme, I searched and eventually found a Lyme disease specialist here in New South Wales - one of the only ones. When I visited him, he thought it sounded very likely that I did have Lyme and contracted it in Ireland, where I had been living for four years up until last June. He knew all about the IGENEX testing in America but said the absolute best place to be tested for Lyme contracted in Europe was Germany. He said Germany was the centre for Lyme treatment for Europeans and the German test would pick up every European strain. All the best and most current research and literature is unfortunately for most, all in German. (So if any of you British are thinking of being tested, make your doctor send it to Germany for testing, it will be more accurate than IGENEX for Europeans). Anyway, to cut a long story short, I am doing very well and have not had any dizziness at all for three months now. I'm off the tablets and I didn't relapse when I went off them - I was SO relieved. I still have the tinnitus and a bit of ear fullness, but I can live with that. I do have the odd moment where I suddenly feel dizzy, but it's fleeting and only lasts a second, so I would say I'm at 100% as far as vertigo is concerned. I got the Lyme results back and it turns out I don't have Lyme after all! It was all clear and the specialist was positive about it, so it felt really good to could cross it off my list. It turns out, however, in a strange twist of fate, that one of the tests DID show that I had something else called lupus! Lupus can cause vertigo and inner ear problems as one of its many varied manifestations. In fact, Lupus was also probably the cause of my severe "unknown " illness in 2008. So in my hunt to cross Lyme off my list, I actually found the true cause of my illness anyway. I now have to follow up about the lupus with my GP, because it's an incurable auto immune disease, so I need to have monitoring ect. But I feel fine and well at the moment and at least now I know what's going on with my body, instead of just being left with bizarre inner ear symptoms with no idea why or how. I would strongly suggest anyone who has had strange and changing symptoms over a long course of time to dig further and further into it and be persistent, because there is always a cause for everything, there is an answer out there, nothing happens in our bodies for no reason whatsoever and knowing is so much better and healthier than not knowing. If you find a cause, you may also find a cure, or at least a treatment. I agree with some who have warned on here before, such as Brad, that many months and years of uncompensated labs is not normal and that other causes should be looked into. Anyway, I promised I'd check back and give updates, so that is where I'm at so far. I wish you all the best of luck, I know how absolutely awful being dizzy all the time is. It was the worst time of my whole life and I pray to God I never go back there again. But I want to thank all of you for the support you gave, it helped a lot. I will continue to check in and see how you're doing. I wish you all the best of health and happiness as soon as possible. Ish xx |
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I love love love the success stories!! Thank you so very much for sharing them. There is hope, even with it seems distant. I'm so happy that someday we get to wake up well and look back and think wow, what a journey! |
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Hi all, Welcome Janette and Gill. If it wasn't for this site, I would have not found answers to my many questions that I certainly had, especially at the beginning of the labs journey! Doctors and specialists do not seem to have a clue about all the side effects and secondary problems labs causes. For many people it can be quite a short lived thing of a few months. A friend of a friend recovered in 3 months Someone else I heard of got rid of in 6 months and others a year or longer. So never give up hope or heart - you will improve. Gill - you seem to be one of those that recover then relapse after a while. How horrible for you. I hope and pray that it is short lived and that this is your last relapse. 5 years is enough punishment! Ish - I was only thinking about you the other week, wondering how your Lyme results were. Pleased it's not that, but glad you found what is wrong, although a problem I'm sure you could have done without. I'm still waiting to see a neuro re: the Sibelium. I have it with me but am a bit nervous about taking it without speaking to a specialist first. My Doctor that I requested it from, didn't know that much about it! Did you find any side effects with it Ish? Anyway, good luck in whatever you do and hope and pray too that you do not have any set-backs. xx Well, my injections haven't really done anything at all. As my physio said - it is all secondary problems due to the compensatory mechanism in the brain. So, how do I get my brain to tell my muscles to relax and not tighten - I'm in control?!!!!! Melissa - I wish all my problems were due to my neck alone, but not the case I'm afraid. I do feel a bit better today - maybe just the lovely bright spring sunshine which we haven't seen for ages! I noticed the posts about the homeopathic tablets called Zyvestra - very interesting. They sound very similar to the homeopathic stuff called Vertigoheel that, on page 12, a guy called Gary from Ireland hunted down. He found they didn't do anything for him. His posts are in the second half of page 12. If you Google that and check out the ingredients, they are similar but not the same. When he first mentioned Vertigoheel - I thought it was a device you put in your shoe to help with balance (SO dumb)!!!!! Anyway, I cannot find any distribution of Zyvestra here in the UK - anyone got more info? I would try it - anything. I've tried everything else. I would even try some Witch Doctor's brew if I knew it would help! Well, I could resort to my hubby's cooking as an alternative LOL!!!!!! Love to all the Sharp Blue Crew. Keeping the faith. Love and hugs, Gloria xx PS - Wendy - you are so right about how much of a pain keeping the house clean and tidy is when you are trying to sell. Just don't open any cupboards or drawers is all I can say to anyone visiting my house LOL!!! |
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Forgot to say to Sharon - just love your slogan for a T-shirt "Legless with labs not lager"! Great for those that do our VRT in the open and stagger around a lot!! Any more ideas from those who have a creative side? Brightened my day with a laugh Sharon! Gx |
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Hello everyone, You will like this one. Last couple of days i have felt reasonably good. Maybe 95%. I am in week 12-13 of this thing. Neck good Eyes Good No fatigue No vertigo or feelings of imbalance / nothing Everything reasonably good Best i have felt since the start Like something has changed / a curtain has been lifted. Decided to go out for a walk - first in a few days. After a short while (5 mins) started to feel my heart beating strongly and my BP coming up - almost like panic attack type palpitations - but i wasn't having a panic attack or anything like that - there was no chest tightness / no breathlessness / no pain / numbness / dizzyness / tingling / hyper-ventillating etc and i wasn't anxious or anything like that - it was a nice sunny day. Just my heart starting to pump hard and race on its own. My brain has obviously initiated this re-action because it thought something was not right. Either that or - it's not been right for so long - that now it is right it thinks the good signals are duff. Ive had all the heart / blood tests etc - so nothing wrong with the ticker - or so they say. I do know the vestibular system does influence adrenal release, heart rate and BP that's why so many people get palpitations and panic symptoms etc when things are off or when exposed to a dizzy trigger. Anyway, something stoked my system in the belief things were not right. Once i rested and stayed still for a while - everything returned to normal. Will try to repeat the above under controlled conditions later - Obviously i will be looking to avoid a heart attack of any sort. Some beta blockers might get me to 100% and give my brain time to sort itself out. This is just great - if it's not one thing - it's another !!! Stay safe, BINX1965 |
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Hi Binx, I feel for you. How many times have I done exactly what you have. Felt good - decided to do something a bit more strenuous only to find another oddity raise it's ugly head. It seems that all the bits of our bodies have to be re-programmed. I think your balance/brain was not used to you walking continuously and at pace. Will be interesting to see if you get such a strong reaction next time round. Maybe good VRT? 'They' do say that walking is a very good form of VRT and the more you do the better. I'm very good at preaching rather than practising!!!!! Recently, I have had all sorts of internal examinations and investigations thinking all my other odd symptoms could be down to more serious stuff - all normal. With all the tests, examinations I have had done over the last year, there isn't one part of me that hasn't been checked. Everything is all ok EXCEPT the damn head!! Hey ho - onwards and upwards eh? Keep positive Binx, Love to all, Gloria xx |
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Hi all, Well I'm off the Labs list and on the Meniere's List now. After tests all day Friday they gave me the bad new. Results all positive. The light has been taken from the end of the tunnell. Well now it's all up to the rest of you to get well and over this shocking vertigo. Love to you all Aussie Donna |
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Aussie Donna, I'm very sorry to hear the news. What do they say can be done? What sorts of txt to keep it at bay? I hope they can give you some relief. Damn this stuff! Will be thinking of you Stay in touch. B |
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Hi all Donna - I am so sorry about the meniere's diagnosis but please don't give up hope; there are more and more treatment options coming out for people with this illness. I have a friend who has it and the doctors are now thinking of operating on her. If you are not confident about the diagnosis then get another opinion. I paid over a thousand pounds for a consultant that tested me for meniere's and all along I was pretty sure I didn't have it. Take care and try and stay positive. Binx this may be of interest to you. I read one of your earlier posts where you said that a doctor mentioned a migraine element. This happened to me a few months back and I dismissed it but after seeing my balance specialist on Friday she explained it so clearly. I wish I could post the diagram she drew but I will try and explain it the best I can!! Basically imagine four circles, two at the front and two at the back that all slightly overlap. One is the balance centre in the brain, one is the migraine centre, one is the nausea centre and one is the anxiety. VN or labs have caused our balance centre to be excited, hence why we are dizzy. This centre is firing off signals which it would not normally do ( she said think of it like fireworks!) These sparks are hitting the other centres and causing us to have symtoms related to migraines and anxiety that we would not normally have. It is not MAV so don't get it confused, what we have can be cured but we have to calm everything down. She said all the other symtoms we have cannot be caused solely be the balance system. The fatigue we experience is definitely from the migraine centre and she said when therapists often say our neck is just tension from holding ourselves stiff, this is rubbish, it is also a symptom from the migraine centre. I have never been a headache sufferer but she said you don;t have to have been because it is not a proper migraine we are having, just elements of it triggered by the balance centre. So what can we do???... Well she has given me a six week program which actually involves very few VRT exercises. This is what I have to do: - No caffiene, fizzy drinks, energy drinks or chocolate at all. - Drink three litres of fluid a day - Eat regularly to keep blood sugars consistent because this aggrivates our swirlies. - Do 30mins cardio every day - Walk every day - Practice some yoga - Get 8-9 hours of sleep. Ideally bed by 10/11 up by 7/8. - No napping through the day or lounging around (one hour is ok if necessary but no sleeping) - No painkillers or meds. Even paracetomol messes with the chemicals in the brain. Just ride through the pain and use heat packs on the head and neck. - 5 head movements when waiting for the kettle to boil or when sat on the loo!! - She also gave me a couple of VRT exercises but I'm sure you all have plenty of them! I'm not hoping for a miracle but she has had many patients recover on this program. She said there was one girl my age who sat on sobbed in her office because she had been suffering for so long. She put her on this program and booked to see her in six weeks time. The girl called back after four weeks and said she was better and back at work. She never heard from her again!! Fingers crossed!! Jemma - I know you have mentioned ME quite a few times. Nova said so many patients are wrongly diagnosed with ME and when they come to her and folow this program they realise they never had ME. I really think she is worth a visit. I had to travel 70 miles but it was totally worth it. I would recommend Nova to anyone. People fly into manchester from the Isle of Mann because she has such a good rep. One guy was hospitalised after been on a boat in Venice for 20 minutes. He thought his life was over. He came to see Nova and she got him better. She still phones him now every so often to make sure he is ok and he is absolutely fine. No set backs. I know I should not get my hopes up but she was the first positive person I have seen. She said ENT consultants are a waste of time. Their speciality may be the nose so they have very little knowledge about the balance system but they still send us to see them! Hope I haven't babbled for too long!! Take care all Ashley xx |
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I have been suffering from this awful condition for about 12 days now..12 days of vertigo and passing out. It is absolutely dreadful and difficult to explain to people as you can appear well from the outside. I am quite an active person i am 25 years old, and im usually constantly on my feet, i'm pretty healthy. As soon as i was diagnosed with this i began finding natural remedies that wont just temporariliy help but will help to make me well in as little time as possible. Firstly i am very lucky because i have a very caring family who are always there for me, so i was never left alone, make sure someone stays with you to comfort and talk to you, make them research for you so that they understand this condition better. I found that i had extreme fatigue, absolutely no energy at all, recently been told i am aneamic too, so i started to change my diet. I would force myself to have a heavy breakfast 2 eggs with buttered toast, and a glass of cranberry juice full of antioxidants. Cut down on caffiene intake as it will only dehydrate you and also you need all the sleep you can get. secondly i found that laying down flat on the carpet helped too, and just try and concentrate on getting better, believe in it that you will. Be thankful to God that you still have your senses. Being Muslim, my faith is strong to me, i was unable to pray, so i just began praying in my mind, believeing that god was putting me through a small test. always be grateful- some people are parylised they cannot move at all. Also another thing i did was use something called "black seed oil" this superoil is mentioned in our holy book as the cure for everything apart from death, i told my mother to put a small amount of this into my ears and after a few minutes after use i felt much better and abit more at ease. One last thing i would like to mention is a natural remedy for vertigo: in 1 glass of water, add a pinch of salt, pepper and squeeze fresh lemon juice, this worked for me too as it made me feel much better. Just try to stay positive and do things that make you feel relaxed- get someone to read a book to you, watch tv,listen to radio, dont lay around waiting for it to get better just believe that it will :-) Hope this helps.. |
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Hi everyone, I wanted to post for a couple of days, but have felt really awful. I am starting to feel like things are on the upswing, but who knows. You never know with this thing. What I find the most upsetting, is that even after a year of progress, I was still able to have such an intense blip. No actual spinning vertigo, but light-headedness, legs all wobbly, marshmallow feet, foggy head. And of course the anxiety. I have upped the VRT to twice a day again. Hopefully things will improve. And yes, perhaps my massage (which I will never do with that therapist again) brought all this on. In the midst of a crying session the other day, my husband explained to me that although things were crappy at the moment, it took so long for the intense symptoms to come back. He said I should be more positive that it took so darn long for the bad blip to resurface. And I guess he is right...maybe my body and brain are stronger?? Melissa I love seeing your positive messages! Keep em coming, and I am so happy to hear that things are well with you. B So nice to hear you have had some good days! I love that free feeling, like you can do everything and all is normal. I hope you are still in the good days!! Yay! Janette Hi there! Sorry that you had to search this out, but everyone is so helpful here. It is nice to speak with others who know what you are talking about. Wishing you a quick recovery! Ashley Very interesting diet. Worth a try I suppose. I would have trouble not taking Advil though, especially for those awful headaches I get. Keep us posted on how you are doing! Gloria I too have been probed and prodded this past 1.5 years...much more than I would have liked. I have made an appointment with my GP (new one) to get another referral for a neurotologist. I see there are only a couple in my province (that I could find anyway). Tons in the USA...wondering if it is worth the trip and $$ to pay to see someone down there?? Wishing everyone better days!! Lucy xo |
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Gill Whittal....... Welcome to the site,how horrid that you have already endured this hideous illness 5 years ago only to be struck down again. There does seem to be quite afew people who, having recovered fairly well for a while, get hit with Labs again usually when they are at a low ebb for some reason ie- a bad cold. So sorry to hear you have been suffering again since xmas time. This site is a godsend, the other guys on here are full of info and advice and it's a real comfort to know there are others out there who know exactly how you feel and how awfully frightening the symptoms can be. Do you know what made your Labs return, were you poorly?? You say in your post that you managed to get your Labs to a manageable level, what help did you get?? Did it just improve on its own?? And how long did it take before you could begin to lead a normal life again. Goodness me, you probably came on the site for some support and all I've done is bombard you with questions!!! Anyway Gill don't despair... if you've recovered once you can do it again, you will get lots of support on this site so just join in and keep posting! Binx...... what a scarey thing to happen when you were only out for a walk, Ashley's post is really interesting though, certainly makes you wonder. You posted afew days ago that maybe you would be able to get back to work soon- are you sure it isn't too soon bearing in mind the symptoms you just experienced, you are still healing, might it knock you backwards if you went back this soon? (it seems like we've both been away from work for so long but in the world of Labs we really are still in the healing stages). Hope your 'repeat under controlled conditions' goes well, let us know. I've been having some excruciating ear pains on my bad side, they come on really suddenly and then go after literally afew seconds but they are so painfull they make me grab my ear and hold my breath, my heart is racing when the pain has subsided- weird because ear pain is not a symptom I have experienced, had terrible neck pains that seemed to go into my head in the early days of this damn thing but no ear pain. My ears still rumble,gurgle and crack alot but are pain free usually. Yet another anomaly to discuss with the Doc tomorrow! Keep going up the ladder everyone in Labs land! Sharon. X |
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Ash thanks for letting us know about your apt it was really interesting. I am so glad you have found the recommendation helpful. I have to say when I spoke to Nova on the phone she did sound very knowledgeable. Looking at the programme she has given you, I am already doing many of the things she suggests. All I need to do is stop the chocolate (that will be hard!!) and do more exercise. I did try but it gave me chest pain but maybe I should try again. I intend to do more walking now the nicer weather is coming!! Let us know how you go Ash and whether you see improvements! Take care all Jemma xxx |
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Bia Ahmed...... Hello there and welcome to the site. There are afew other young folks around your age on here. So good that you have a lovely supportive family to help you recover, I don't know what I would have done without mine over the last few months. Bia, you certainly have the right approach to beating this awful thing, you have a very positive attitude and you are soooo right about remembering how many others are so much worse off than ourselves. I have never heard of black seed oil, I will have to google that one. Some of the people on this site have been poorly for along time, seen many specialists and tried alsorts of treatments so it's great to share different remedies etc that have worked (and some that haven't). Interesting that you mention cutting out caffine, alot of other sufferers have said that has helped them too. Anaemia is an awful thing to have and can make you very weak, dizzy and faint, not what you need on top of Labrynthitus!!! You will find lots of advice and support on this site but in the mean time I hope you continue recovering and are soon well enough to be able to pray again. Bye for now! Sharon. |
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Hello everyone, Just a quick post. Generally feelling better - but getting a little depressed about the length of time this is taking. Ashley - thanks for the info - will def make use of it. Sharon (uk) - think i am getting better and perhaps not a million miles of getting some sort of normality back. Mentioned the palpitations and blood pressure bit to the doc this morning - was told not to worry about it and try to ignore it if possible. She said it couuld be a mix of the labs and anxiety. I believe this is true. This is holding me back from jumping what could be the next to last hurdle. I always knew it would somehow. Over the last 10 days the fatigue has lifted and my appetite has returned fully - i could litterally eat a horse at times. Still some tone changing tinnitus and neck probs. Vertigo only brought on by certain triggers. Although some of the other symptoms are still hanging around i think they have faded significantly enough not to be too burdonsome. I want to go back to work and a few beta blockers may have seen me there - but as i'm asthmatic - there's no chance that my doc will give them a go - shame that !!! It may have got me out of this hole a lot faster. I was told to give the valium a shot - but don't like the idea of getting hooked on benzo's - as the road only leads to oblivion. Told me to pop 2 mg in the mornings and see what happens. I will decide before the weekend if that's now a risk worth taking. Hello to everybody old and new. Chin's up ! Just keep fighting on up those ladders. Stay safe, BINX1965 |
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Hi Guys, Just to respond to few comments. Sharon, If your going to try it, let me know how it works out for you.. I really want it to be something that works, incase my issue comes back... I wont be the guinea pig though :) Jemma, Yes, its me from way way back.. maybe page 2,3 or something... Not sure. Have had this thing for a long time I think total 10 years.. It comes back again and again, although I think definately not as severe as the time before. I dont want to scare anyone. I am doing a whole lot better, pretty normal 98% of the time... When I get a cold, I will probably be dizzy for a week or 2, when it rains, I know it beforehand :). I just think that my inner ear is now very sensitive and reacts to every change, large or small. I run about 2-3 miles, 4 times a week and have been doing so for the last 9 months. I think overall, since the beginning, this has helped me tremendously..... Its the only thing I do when I get dizzy.. get back outside and run, even If I feel lousy. If you havent started an exercise program yet, preferably running, I would recommend you do so, I believe it will shorten the duration of your labs. I also believe it will make your inner ear stronger and help against relapse. When you start running, you will feel a little worse, but it does get better.. And you do not have to run 2-3 miles.... start with 1/4 or 1/2, but keep it consistent |
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Day two with no pill. I don't feel too bad. I don't know how long I will make it, but it is progress. Don't want to jinx it. Week 17. Binx, you are a responsible, knowledgeable person and I don't think addiction will be an issue for you. It is not a high dose and Benzos are very useful and magnificent. You're awareness of potential risks will keep you smart and safe. You will be fine. I've been studying to become a licensed addiction counselor for the last couple years and am close to being done so I kinda know a thing or two. Ashley, what you say is very interesting. I will give it a go. The caffine and sleep are an issue for me! I hope you are feeling better! Gloria, thinking of you and hoping your headaches are at bay. Jemma, my daughter is in love with bags of all kinds and would buy every one she sees if given the chance. I,myself, am a shoe lover!! Lucy, I hope you are coming out of your icky spot! I fear those days and hope to leave them far behind sooner then later. Wendy, Sharon, Janette, Claire, and all else, keep thinking the good thoughts and I wish us all dizzy free days ahead. B=) |
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binx, yeah i'm pretty much fully recoverd now :) its been about 2 weeks since i have had any symptoms beside quick moments where i get dizzy for about 3 seconds, and a little drowsyness from time to time, but i think that is just my body recovering. i can now eat pretty much any high sodium food without getting dizzy unlike befor. things seem to be going pretty gosh darn good. i just remember the day i woke up with LAB and i was a FREAKING OUT!!!! i woke up my mom real early in the morning and said i think iv got a brain tumor and she reponded by saying "DONT SAY S#!% LIKE THAT MISTER!! lol i feel bad now for feaking her out haha to everyone els there is hope even though it can get a little depressing at times, you will recover!!!!! :D
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Hello everyone, Again just a quick post. B: Thanks for the info on the benzo's. I am going to mull this over the weekend and decide whether to go for it or not. I have read too much bad stuff on the net about them - although i have taken valium for back problems in the past with no problem. Relaxing the muscles may be an answer - as the doc says the only reason you feel the palpitations is that your chest muscles tighten up (possibly due to being anxious) - otherwise you would be non the wiser. She said that it's not my blood pressure as there are people walking around with very high BP and don't even feel / know it - some as high as 210/140. It's the muscles tightening making you feel the heart - then making you feel more anxious. Sharon (uk): hope you are feeling better - what's things like for you at present ? Everyone else: Please take a look at the following link regarding magnesium deficiency and the symptoms. Reading the article i saw some of our maladies in there. Apparently - it's more common than you think. I initially thought the whole thing was 'quackery' but it doesn't appear to be ! When you have had a look at the article - you can then do a search on the net for things like 'magnesium deficiency symptoms', 'magnesium and anxiety' and 'magnesium deficiency vertigo' - you will be surprised what's out there. http://www.mbschachter.com/importance_of_magnesium_to_human.htm Anyway - see what you think. There may be something in it for someone. Maybe worth a try for the price of a few suppliments. Hope some of you are up the ladders. Stay safe, BINX1965 |
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Hi everyone I developed tingling, numbness and muscle twitching in my legs, arms, uppper chest and shoulders so went to see a new doctor at a new facility for a second opinion. I now may have more than Labs... my new doc is thinking I may have had an "occipital stroke" after my prenancy... which is rare but does happen he says. I'm getting an MRI this morning to see what it shows. By the way, I also have severe dizziness now.. I can't even move my eye balls. The room does not spin around me but I feel as if the inside of my head does not stop spinning for about 5 seconds every time I move my eyes (look up, down, or around). I will keep you all posted after I get my MRI result. Please take good care of yourselves!!! kia |
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Hi all, Just been to see another VRTphysio. The previous women I was seeing changed areas. So have gone through the whole story AGAIN! Think I'll record it for them to play at leisure. Anyway, she was quite a knowledgeable woman - better than the other person I saw who said just carry on doing Cawthorne Cooksey. Basically, she said that the part of the inner ear nerve that gets damaged does not recover. Most people, without even realising, has automatic central recompensation, but then it is the peripheral stuff that gets left. So, people like me are up and around doing pretty much normal day to day stuff but still get swirly headed and don't feel 'normal'. This is why you need to be re-assessed as time goes on. The 'Rotational Chair' that I'm having done at the end of this month will test my peripheral responses. She, like everyone else also thinks my migraines have to be addressed. Just a shame I'm not seeing the neuro until May. She said that with the correct medication I may even see quite a quick recovery as this has been the thing hampering my recovery. She also said that the brain has millions of neurons that lay around not doing very much and it is these that are 'trained' by VRT into taking over the damaged part of the brain and do so quite efficiently which is why people feel better. However, if a minimal amount of VRT exercises are not done daily to keep reminding these neurons that they have another job to do, then we relapse back to swirlyville again! So it seems VRT forever!!! She said nothing major just a minute or two of gentle side to side head movements and up and down to keep the neurons in check. Also, it is better to do a minute or two of an exercise 3-4 times a day rather than one big effort. Also as others have mentioned some form of daily more vigourous exercise - whatever suits - walking, running, swimming. More of the same really, but interesting. Binx - you have done so well to get to where you are - good on you. Just maybe keep doing a bit of VRT daily to keep your neurons in check !!!!!!! This woman also said that the vestibular system is notorious for being slow to recover unlike other parts of the body so not to give up hope because we will get there. B- way to go girl - hope you carry on doing well without the meds. You say you have been training to become a counsellor - is that what you currently do? Very worthwhile. Bia - welcome and sorry to hear you have this. Well done on your positive attitude and hope you see improvement soon. Sam - great to have your update. Good for you being so active. I need to do that. I'm not the athletic type - my hubby and friends would SO agree with that!!! But, am trying to be more active. I'm not a runner - and most other things - cycling etc I'm afraid am a fairweather person. What a cop out is that. So must try harder!! Now - what to do next - VRT? Aerobics? Swimming? Cup of tea and a biscuit (or 3) - now that sounds more like it!!!! Love to you all - Wendy/Sharon/Jemma/Claire/Ash/Lucy - thinking of you all. Love and hugs, Gloria xxx |
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Gloria amazing physio you have there! Very interesting read. If you see her again could you ask about SSRIs and compensation Im considering them as been soooooooooooo depressed . Just saying a quick Hi to everyone Im sorry I dont come on much but I do take a look see how people are doing. I just had a nasty tummy bug and back in head washing machinge today ;( Ah well X |
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Hi, everyone! Made it four hours shy of four days without a pill. My daughter is ill and had to spend the day at the hospital today for a CAT scan. She has had abdominal pain for two weeks and we need to figure out what it is. A stressful day I'd say. I hope everyone is well and on the up and up. Tomorrow is a new day. B |
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Hi everyone Hope all you fellow lab sufferers are keeping well. Hate to be negative but have had a bad week this week. ie, keep waking up in the night with hot sweats, wobbly legs, the swirlies, headaches, general feeling of being drained. Could go on and on! Have had quite a testing couple of weeks family wise ie; teenage daughters! Does anyone else find when stressed the swirlies seem to be much worse. Like everyone on here, just want this thing to go away soon, just feel dragged down by it now. Oh well thats my moan for the day. Gloria and Ashley, thanks for giving us the info on your recent sessions. Both sound pretty useful. Have been following the head movement thing a few times a day instead of one big session. Makes it easier trying to fit them into the day. I particularly like Glorias VRT - the cup of tea and biscuit one! Deffinately going to keep practising that form of VRT, right up my street!! In some earlier posts some of you mentioned people that had recovered in a short space of time. I was speaking to a practice nurse at our surgery and she said she had labs and recovered in one week!!! She said how awful it was, I couldnt help thinking yes must have been dreadful putting up with it for a whole week!! Dont think she believed me when i said i was still suffering. Just wish there was more known about this illness, so you didnt feel like you were going mad with it when you say a year on am still recovering and people look at you and think you look ok! Hope i havent made you all feel fed up reading this, but want my old life back, and to stop just living half a life. Hope everyone has a lovely weekend, sorry to hear from the new sufferers, hope you are all managing. It really is a test of strength and patience but one day we will all get there, (soon i hope). Lots of love Wendyxx |
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Hi all, B - so sorry to hear about your daughter. Such a worry for you. Four days without meds is an accomplishment - you'll do it again and for even longer. With a stressful situation like this and to try and go without your pills will be too much. You don't want a bad relapse of labs. Thinking of you B and hope all resolves itself. Keep us posted on how things are doing. xx Donna - good to hear from you. Labs is bad enough without getting other bugs and things! I'll ask about SSRI's - won't see her for a few weeks though. I think SSRI's are OK - it is the valium type stuff that's not too good. What are you taking? Got our first viewing for our house today - must go and scrub and dust and throw everything back into cupboards and drawers!! Wouldn't it be great if the first people like it and want to buy- I must dream on. BTW - have started to do a new VRT exercise (for me anyway). Sitting on a chair bending head over to get up, look up and turn around 360°, sit down again, get up, turn around, sit down. Five times one way and then five times another. Clearer head today after a couple of days. Maybe coincidence?! Better weekends for all. Love and hugs, Gloria xx |
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Just a quick note to B, i had posted before your new post arrived on here. Sorry to hear your daughter has been poorly. Wishing you our love from the UK to her and to you. Hoping all is well for her. Well done you for coping without the pills. Keep Strong.XX Gloria. good luck with the viewing. We have a beautiful sunny day in Kent, hoping you do as well as it makes such a difference when people are looking round. Fingers crossed. XX Bye again to everyone else Wendy XX |
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Thanks everyone for you welcome! dizzyness is better but I am so anxious this time, didn't seem to have this the first time round, I hate answering the telephone, i go all jittery and I hate being at home on my own, my husband has just gone to a farm sale and for the first hour I felt awful, my legs just went like jelly! I struggled to walk round the garden to try and take my mind off it, have now settled to some office work to try and focus on something, I have never been like this in my life! I am still working but anything out of my comfort zone I am not good, recently had a meeting a work and for the first half hour just thought i would have to go out, also trip to the hairdressers was not good, Will I ever get back to being me again! sorry to winge, I am usually soooooo postitive, love to you all, we will get through this wont we, by the way I have tried Amitriptyline this week, only 5mg, down to 2.5 one day feel so tired, week and sick, dont seem to tolerate medication at all, anyone else been on this, I have a lower back problem from previous surgery and the doc thought Ami would help dizzyness and lower back! I would rather have the pain, at least you can still function! love to all Gill xx |
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Hi All, Seems like we are all going up and down that flipping board - me, well I am having another relapse. I looked at the top of this page and realised my last one was back in October so maybe they are getting further apart, not sure. Mine started on Tuesday, walking home from the local shops the pavement just started to look like it was at an angle and I must admit I did start to panic and by the time I managed to get through my front door the world was rocking. It didn't help that Wednesday I had the epley done again (twice!!) and this has also put me out as I have had to sleep upright for the past couple of nights and my neck is now just so painful. Not sure whether the epley is worth it as it always seems to make me bad afterwards. Oh well sorry to just come and here and moan. Hugs Shirley xx |
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Shirley and all who need encouragement today! Just to say that I have had two epleys since Christmas and I seemed to be worse for about 10days after, I am much better but I am trying to deal with the awful anxiety that the dizzyness creates, I am not an anxious person at all but this has left me so jittery and my legs feel like jelly! We will get there, I had my first episode of this about 5 years ago,I did improve so much but I think that this last episode was triggered by helping on the farm to clean and grade apples on a conveyer belt system,...just too much going on and constant droning of a generator, think it caused me to decompensate, anyway enough of my wingeing! I felt for you Shirley on your way home, you just want to be at home when you feel so rough....just to be in a safe place...i just cannot believe how this thing makes me so panicky!!! Are you doing vrt, i do struggle to do this but i'm sure my physio is right when she says we must try and do them daily Take care everyone Gillx |
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@Gloria - I have to say, I'm very very sensitive when it comes to drugs, I feel everything, I'm even scared of taking natural rememdies because of side effects, but I had absolutely no side effects from the flunarizine whatsoever. I understand you feeling cautious or worried, I HATE taking new drugs I haven't tried before. I HATED the Serc, I felt a little weird on it, but I really didn't feel anything on the flunarizine at all. It was such a relief. All I felt over time was less dizzy until it was gradually completely gone. It took about 2 or 3 weeks for me to really notice a big difference. If you feel safer waiting for a specialist before you take them, I understand, but I certainly know it's not any less safe a drug than any of the other drugs you want to try or what has been mentioned. It is known to have very mild side effects and is commonly used on the continent. Cheers, Iseult |
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Here's a quote for you ! "The symptoms and the illness are not the same thing. The illness existed before the symptoms become aparent. Rather than being the illness, the symptoms are the beginning of the cure. The fact that they are unwanted makes them a phenomenon - a message from the unconscious to initiate self-examination and repair." BINX1965 Sean: Glad you are 99.9% clear. Enjoy ! |
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Dear everyone,I havn't posted for a while, but I thought I'd let you know that I'm still feeling pretty good overall, I still have days when I'm not 100% but basically I'm feeling better. My visit to the ENT last week, explained a lot about my condition and although my problems stem from repeated attacks of Labs, which has caused damage to balance organ, my worst ear being my right, along with that I have migraine related vertigo, for which I take Verapamil. It was explained that because of the Labs it has left me with a weakness that will almost definitely return, when I'm ill, tired, stressed or with migraines and I really must not overdo things even when I'm feeling well- no more doing it all, as I'll regret it the next day! Although it's a bit depressing to think that I will never be cured of the dizzies long term at least I know what I'm dealing with and I can only accept the diagnosis and deal with things when they occur, I was told to do some eye-tracking exercises to improve my balance. On a lighter note I'm using my WII games console and really think along with daily walking that I'm improving. Love Sue xx |
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Sue Great news you can still live with the dizz ! At least you know whats wrong too. Hope you continue to improve how long have you had this? Gill I take Ami its ok once you get used to it Im on 15 mg now and am never tired anymore it takes a month to go though but it helps my state of mind and the dizzies a little . They want me to up it but I wouldnt b able to go the 50mg they want as it is sedative but honestly give it a longer try. Does anyone get head numbness Im seeing a neuro about this in April? Im scared it keeps happening . Ive already had an MRI which was normal in october 2009 when this started. My 18 month anniversary coming up this month but Im back at work which is good just wish it would go though but I really dont think it will anymore. Night everyone :D xx |
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Dear Donna,thanks for your interest,I have had the dizzies for almost 5 years, so for me it is a case of learning to live with it, and no it isn't easy and it does impact alot on my life and what I can and can't do. I gave up my job about 2 years ago, I just couldn't cope with the array of symptoms this tends to bring with it, but I am hoping to return to work soon and hope that I can manage to keep it up! Gloria I was reading your recent post and feel we are at the same point with this illness, seems you have a good VRT physio, something we don't have here!Although the lady I saw last week at the ENT was the best I've seen so far! I was rather hoping that they would say we have a miracle cure, tablet even operation but no such luck, just a big piece of realisation and hard facts that, like it or not I'm stuck with this forever. Wendy stress definitely makes the dizziness worse, and yes teenagers certainly mean stress,I have 4 children ranging from 23 to 16, need I say more, never a dull moment! Gill,is this your first relapse in 5years? Shirley, hope you soon feel better, I think it depends who does the epley as to how good you feel afterwards,if they are used to doing them, they work but if it's a GP who isn't doing them often they don't work as well. To everyone else take it easy and don't overdo things, especially when you start to feel well again Love to you all Sue xx |
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Gill - thank you so much for your words of support. I've never spoken to a person who has had the epley done so it is a relief for you to say that it takes you about 10 days to get over it. I am now starting to get a bit better - still have the fairground ride feeling but better than I was a couple of days ago. My physio told me to keep my head as still as possible for a week - no looking up and down etc. which is impossible to do but I am trying to remember not to. I've aso been told not to do any VRT until I see her again at the end of March. Donna I think you are right about the outcome depending on who does the epley for you. I had it done by an ENT doc back in the summer and I was just so dizzy afterward - he made me 10 x worse and it took about 6 weeks to get over it. When I told the physio it seems he didnt put me in the correct position at the end so even ENT docs who you think you can trust get it wrong. Take care everyone Hugs Shirley x |
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Hello everyone, Glad to see a few LADDER CLIMBERS on the board. I will add my own. Today at 95% (although this could be weather related) Still some very minor positional vertigo issues. Doc says this could now be from post viral debris in the inner ear - but it's not too bad - i could live with it ! Apparently - this can be common after a bout of labs - if my docs right ? Currently tackling the labs anxiety demons and driving stuff. Been out with the wife in the car today - it's def anxiety. Feel myself tensing up expecting the dizzies / swirlies but they didn't come - but my body (and mind) is just so tense almost conditioned into expecting the worst. More practice required to gain some confidence again me thinks ! Also need to get some exposure to other triggers - just to gauge if current progress is real. Valium will be on standby as i now push to the max ! I would also like to have a drink again - but won't risk it until i know i am at 99.9% or fully recovered. I only used to drink 2 lagers on a Saturday night - aint really missed it - but would like to know i could do it again if i wanted to. Been no social life since this started. Keeping an eye out for snakes !!!!!!!!!!! Stay safe everyone. BINX1965 |
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Hi, Everyone, Wendy, I'm sorry you've been feeling down. I totally understand the feeling of "WTH happened to my life?" It have been way too long for you and it is time to stop. I think stress plays a huge part in this mess and I try to keep calm. I found a couple weeks ago that a big stressor brought me down for a couple weeks. I try to pay good attention to that and try to redirect. Somtimes it works, sometimes not so much. Kids are so stressful sometimes. I try not to think about how horrible I was to my mother. My daughter is a whole different story then I was!!! Try to breath and stay calm. Easier said then done, I know. I'm think the good thought for you and for everyone. Gloria, I hope you can keep those headaches at bay. They are simply awful. I too like your idea of tea and biscuits for VRT. I have not been doing many, but when I am moving about I move my head from side to side constantly and make my eyes follow. I have tried to keep moving lately, but have been very tired. I hope your head stays clear for many days to come. Binx, I hope you are fairing well with the driving. This is scary stuff and has altered all our lives in a wicked way. I find myself being hypersensitive to every feeling in my body and sometimes it triggers the stupid anxiety. It can all just be too much. I hope you are up and stay that way FOREVER!! I too wish for a nice cocktail just cause. In time. This too shall pass. Good luck. I was watching House the other night and a guy came in dizzy and the dr asked if he thought he had labyrinthitis and then he layed him down on the table and did the Eply and POOF! gone. Wouldn't that be so very nice? Was interesting to see it be mentioned on tv tho. Have been feeling ok with swirly days here and there. I had to work this weekend so I took my pill. I'll keep trying to go without when I can. My daugher is still down and we are still waiting for the results of the CT. Take your time drs. Geez. Thinking of everyone and wishing good health. B Ps. I didn't proof read. Sorry. :| |
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Hello everyone, Many thanks for your comments and support. Dropped down to 90% today - guess it's the weather. But i will take the 90% - cheers ! Focussing on driving still. 2 trips out today. One daylight - one night. Took my trusty co-pilot (the wife) along for the ride(s). Managed 20 mins day and 30 mins night. Just kept going till the anxious feelings subsided - i eventually started to relax and the tense muscles released. No swirlies or feelings of vertigo whilst driving at all - just the left over anxiety stuff. That said, I can feel my head pulling a little bit - almost like my brain is moving / shifting inside - kinda amusing when you get used to it. When i emerge from the car I still feel some slight motion - almost like you get after hopping off a fun fair ride - but this soon passes once ive found my sea (sorry, land) legs again. Need to face some proper traffic soon - that should be fun ! Next up - the supermarket trips and some full on exposure to the dreaded flourescent lighting. It's punishment all the way to the finish line. Started to increase the walking and even managed some running / jogging. Current symptoms: Tinittus - variable Neck - sometimes pain free - but started aching again as i pushed my activity levels up. Sleep - ive gone from being heavily fatigued to can't sleep (perhaps my thyroid needs checking again ?) Vertigo - Nil most of the time - only certain triggers now activate my moon walking legs and swirly head. Headaches - intermittant - starting to think these might be linked to my neck. When the neck is bad - so is the head - or could it be the other way round ? This may also be linked to the VRT i have been doing. Thanks to everyone who has posted some valuable VRT info over the last couple of weeks - i am making use of it. Anxiety - manifesting in various guises - but i will defeat you - either by myself or with my trusty friend Miss Val ium. Sharon(uk): push your doc for a referral. Non referral after 12/13 weeks smacks of someone protecting budgets (all GP's / practices now manage their own) as each referral costs. If you are not feeling absolutely loads (and i mean loads) better - insist. Point to the NHS website and say that you should have recovered from labs in 6 - 8 weeks - so what's happening. Play the old reverse psychology on her / him. You can always cancel the appointment if you recover. The wait at QMC was about 7 weeks when i looked. Kings Mill is shorter - but the reason for that is they are useless - only thing they did for me was rule out a brain / ear tumor. If you want to short-cut the NHS - you can see Prof O'Donahue privately at the Park Hospital - near Burntstump Park, Notts. He's the top ENT guy in the Midlands and a balance specialist. Cost is about £150 for the consultation. Look it up on the net if you fancy the option. Keep on the lookout for snakes !!!!!!!!1 Stay safe everyone, BINX1965 |
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so today and yesterday have been kinda down because of the weather changes causing drowsyness, a tid bit of dizziness, and some ringing in the ears when i go to bed. besides that i have to fly out to Oregon for a funeral on friday and i'm not quite sure how it will affect me, has anyone been on a air plane with LAB if so how did it affect you? THANKS its good to see everyone is keeping up on how they feel god bless you all!!! |
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Hi all, Binx - really glad to read that you are doing so much better - love your quote you posted on March 12th! Where did you find that - it's quite reassuring. Gill - I never had anxiety issues before all this. Now when I'm in a bad patch (more often than not) like you - feel shaky, wobbly and insecure - horrible feeling. I have taken Amitriptyline. 10mg. I was OK and it did dampen down the anxiety, but I hated the way I felt, so sluggish, put on a bit of weight which I can ill afford to do. So after 3 months came off of it. Sleep is a big problem for me so if I need to, I just take half a tablet now and again to help me sleep. Sue - also pleased to hear from you and that you continue to do well. You are right - it is a case of having to accept this is the way of the world for us from now on in. I think it is because we also have migraines that doesn't help us. Am about to take the bull by the horns and start that medication that Ish has been talking about and which I managed to get from my doctor although it isn't licensed over here. It is similar to Verapamil. Thought if I take it about a month before I see the neuro so I can report if it has done anything for me or not and see what he says. Kill or cure!!! Shirley - what are you doing back on here?! SO so sorry to hear of your relapse, but glad it is improving. Let's hope this Epley will do the trick for good! I think we all need a good dose of warm sunny spring weather to make us all feel better and more able to cope with this wretch. Continue to be on the upward ladder xx. B - cannot believe you still haven't had the results of your daughters tests! Let's hope no news is a sign it is not too serious. Would be nice to know though! Thinking of you both xx. I'm with you on the yearn for a nice couple of cocktails to numb the pain - the consequences though for me would be too awful still I'm afraid. One day!! Wendy - hope you are feeling brighter after your rotten week last week. I suppose, if there are any good things about this and that is when I feel horrible with all the symptoms we talk of - at least I don't panic because I know what it is. Still doesn't make it feel any better though!! Had the house viewing - no response so probably not for them. Not expecting anything to happen quickly though as the house market is rubbish. At least hubby and I can relax a bit and not worry if the house is a little messy or not if we don't have too many viewings. Such a pain living in neat and tidy all the time!!!!! Not that I'm a slob you understand - do like things quite clean and tidy but not perfect if you know what I mean!!! A house has to be a home! Well, not feeling too great this morning. Started my little job last Monday afternoon at my friend's hairdressers. It is only voluntary (she's dong my hair for free as payment). I'm doing Monday and Thursday. The appointment system is computerised. I', OK with all that except you don't realise how your brain turns to mush after having something like this. Yesterday and today I feel drained - plus the headache from hell, the wobblies, shaky sweaty stuff!! So, we'll see. I think I've got to be sensible but at the same time try and stretch my limitations. At least it is not paid employment so I don't feel I have to do it. Donna - numbness is a thing many people on here have had with labs. So try not to worry too much. another weird aspect of labs - the little b*****!!! Claire - hope you are feeling better - haven't heard from you in a little while - so hope all is well. xxx Sean - brillo! Nearly there - fantastic. Now go on and enjoy your life as you should be at your age. xx Well, let's see what this week brings! More of the same I expect but trying to keep the faith and be positive. Love and hugs, Gloria xx |
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Good Morning everyone....You are such a help, I am so concerned as to the anxious way I feel most of the time, not too bad when I have company, can't go anywhere on my own at the moment....will this improve, I work 3 days a week in a surgery and once I am there I am not too bad, I am on hols this week and seem to be worse, maybe too much time thinking about it all, does anyone else feel like this, should I have couselling to help with this or should I just press on and try and do a little more each day, I am driving down our lane once a day but struggle with the main road, but I am fine is someone is with me.....just need you advice please....love to you all |
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Hi there all Gloria well done starting your job. I know what you mean about feeling more drained the next day. Remember when I was working and I was nearly at the point of collapse because I had to keep going in day after day? I think you are doing well to start slowly and have a day or two off in between to recover. It's like we have to live life at a much slower pace with this monster! I have booked a two day break in Ross on Wye, Herefordshire next month. Really hoping it will coincide with a few better days rather than being in a bad phase. You just can't predict can you! If I cope with it ok then I am sure I will feel a sense of achievement as I haven't been on a holiday since before this started in 2009! Ash how are you doing with the vrt/diet regimen Nova gave you? Any improvements? I keep meaning to do some more exercise. I have just decided to give the Candex supplements another go. I remember someone on this site a while back recommended them and I spent £50 on a pot then only took a few. Now I am not taking anything else I might see if they help at all with the fatigue/foggy head and recurrent athletes foot I seem to get. I also have a twitching eyelid at the moment which is very annoying. has anyone else had this? any rememdies? I think it is linked to the crunching muscles in my left ear. Apparently the main facial nerve passes through the ear. Another strange little symptom. Glad people are seeing improvements in general. keep on up the ladder!! Jemma xxx |
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Hi all: Binx...thought I'd comment again and encourage you to get a lyme test. Let me clarify that...get an ACCURATE lyme test...the best is a Western Blot from a USA lab called IGENEX. The symptoms you are describing..the dizziness, mashmallow feet, headache, sore neck, anxiety, etc, etc, are all very common symptoms of lyme & co-infections. Jemma...you too. Twitching muscles (eyelids.) Donna...numbness. Very common with lyme. As many of you may remember, I was originally diagnosed with labyrinthitis back in March of 2010 after having identical symptoms to all of you. It seemed to fit the bill in terms of descriptions. But other things didn't sit right...I was having intermittent flushing, chills, sweating which would come and go. I had a very painful neck and occasional back. I had an increase in eye floaters. I had some myalgias in my legs and muscle twitching. I and anxiety. Never had it before. I had a lyme test from my ENT. Negative. Found an alternative doctor who I went to for a second opionion. I didn't go to her for lyme as I had dismissed the idea. But she diagnosed me and gave me the IGENEX test which was highly positive. Afterwards, I had a brain SPECT scan which showed massive areas of inflammation and of low blood flow (common with lyme.) I also had a CD-57 blood test to measure the level of natural killer cells in my blood..and they were low. 84 and normal is 200. Also common with lyme. So I had my root cause. John Hopkins University states lyme can cause labs. I have no idea when I was bitten. I never had the rash and never saw a bite. (less than 50% do.) Since I have been in treatment over the past 10 months, the vast majority of my symptoms are gone. Dizzines is gone. Anxiety..gone. Sweating, chills, flusing..gone. Neck pain...gone. Tinnitus is much improved. I still have a few mild symptoms so I'm continuing to treat. THey are mainly..twitching calf muscles (mild), tinnitus (mild) and intermittent foot pain (particularly bottoms of feet.) I also still have mild night sweats about once / week. I realize a lot of you are in the UK and are dismissing lyme as a possiblity. But it is in the UK. It is documented. But sadly, most of the doctors in the NHS don't know how to properly diagnose it. The tests are terribly insensitive. Ultimately it is a clinical diagnosis. It is also controversial in the USA. It took 9 doctors to get a proper diagnosis for me and now I'm getting better. I realize I post here occasionally and many of you are polite and say thank you or ignore my posts and believe there is no way. Many of you were here before I came..and you are still struggling with idential symptoms which wax and wane and come in a roughly 4 week cycle. That is a classic lyme flare cycle. Please please please consider an alternative diagnosis if you have been diagnosed with labs and have been uncompensated for months. Particularly if your dizziness symptoms are accompanied by anxiety, stiff neck, numbness / tingling, twitching muscles, vision issues, floaters, sore bottom of feet, sweating, chills, flushing, or any other symptom that may come and go in a cycle. Most "lymies" also have a few other tick-borne co-infections too which can cause other symptoms. I have bartonella, which was a big contributor to the anxiety. Lyme is a worldwide epidemic that is being ignored. The best way to see the issues and understand the situation is to watch the 2009 Oscar-nominated documentary called "Under Our Skin". You can rent it on iTunes. It is also currently available in the USA on-demand from most cable providers. Check out www.underourskin.com and watch clips on youtube. See how many people were misdiagnosed. Some for YEARS! Please consider an alternative. Labs shouldn't be causing muscle twitching, tinging, stiff neck, etc. Yes..I realize that is what your Neurotologists are saying. But they are not familiar with lyme. I have helped one other person from this site get a proper diagnosis and he is now improving. I have also helped about a dozen other labbies on The Dizzy Lounge. If you don't want to take my word for it, why not post your story over on lymenet. GO ot www.lymenet.org and post in Medical Questions in the Flash Discussions section. Give details on timeline, current and past symptoms, etc. I think you would be surprised the answers you get. I'm not saying everyone here has lyme. But I can almost guarantee several of you do. DOn't mean to pester...just trying to help educate. At a minimum...post your story at Lymenet. (I'm bcb1200 by the way.) |
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Jemma, Weird that you say that about the eye!! I had that badly in the very begining days when it was just a few dizzy spells here and there. It eventually went away and I don't miss it. I have a crunchy ear, especiall in the am. When I roll around in bed it sounds like there is liquid in there. When I frist get up noise seems to bounce off it and almost make a crunchy echo. All weird. I hope you have a wonderful mini vacation with NO SYMPTOMS!! You deserve some fun. I have been doing a sinus rinse everyday and tho unpleasent I find it is somewhat helpful. Still having decent days, yesterday was iffy, but was ok overall. I am fuzzy brained and so very tired, but that is how I feel sometimes when I am normal. My daughters test came back clear, which is good, but she is not any better. She was white as a ghost yesterday and actually threw up. It got me a but worked up. All she does is lay on the sofa with the heating pad on her abdominal cavity. I'm glad the scans are clear, but I would like to know why she has been this way for three weeks. I may be losing my faith in Drs completely. She needs to get back to school and soon. Gloria, I'm sorry about the selling the house process. My sister just purchased one and is dealing with the one they live in now. They are just going to rent it, but have to show it all the time and people call at unreasonalbe times. I hope you can get it done and over with soon enough. The moving process is just awful. Have you chosen a new home yet? Do any meds help the headache? My ENT often wants to talk about my past migraines and wants to say they are linked to this crap. Who really know? I hope you are enjoying your job! Good luck with it. Binx, I think tense neck muscles cause intense headaches. I find ice, advil, and the shiatsu(sp?) massager very helpful. There seems to be a lot of aches with labs. Great job with the driving!! Glad you are feeling so much better. Shirley, I hope you are feeling much better now. Gill, I'm sorry you are back in this place and hope you have a speedy recovery. How long were you sick last time? Hope everyone stays on the up and up!! B |
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Hi All Am feeling bit better in myself this week. I just find i get so frustrated with this as the length of time for recovery just seems to go on and on. B, thanks for your words. You are quite right i should try to control the stress. I do try the breathing in for 4 seconds and out for 3 seconds is very good to get the oxygen going back round. I think where labs wears you out and makes you feel extra tiered, sometimes everyday things seem like a mountain to climb. How is your daughter now, have you heard anything from the doctor about her results. Realy hoping everything is ok with you both. You are coping well with working as well, must really take it out of you. Best wishes. xx Gloria, hope the job goes well for you. It is natural for it to drain you for a while, just try to take it easer on your days of. Must be nice to have that adult company again. Did you get any feedback from the estate agent from your viewing. I really think for the fee they charge they could do a bit more. My cupboards used to be full when viewings took place to hide the clutter. I would not cook anything that may make the house smell horrible, ie: sausages etc. Told the girls of for splashing the taps in the bathroom, oh the stress of it. Good luck with that, the right person will come along at some point. x Sue, how are you coping. Your house must be buzzing all the time with with 4 children. Do they all still live at home. You have had this for such a long time now, really hoping you recover completely one day soon. After coping with this dont you feel once it goes you could cope with most things better. Do you feel ready to return to work? x Shirley, hope the epley worked for you this time. For some lucky people it works first time. It just seems with labs there are so many ups and downs. x Jemma, good to hear you have booked a short holiday. Fingers crossed you are feeling goodish then. When i had a twitchy or felt like a flickering eyelid, the doctor said when you are tiered this is a natural reflex for your eyelid! Wonder if they make things up sometimes, but i felt i was winking at people! To everyone else on here, better go as the computer is needed for homework! Take care and lots of love, Wendy XX |
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Hello Brad, thanks for your ongoing prompt - I have certainly not been idle in my pursuit of the Lyme issue - even though I continue to make some solid progress with this illness - whatever it is. It's just taken some time to source quality info at this end. Any long term UK sufferers please note below - it may be of benefit. Just got the info through on Lyme testing yesterday. It's hard to find a lab that's recommended here in the UK - but finally sorted it using one of the Lyme blogs. I e-mailed the lab and they got back to me straight away. You will see when you go to the website it's not just a lab - that's just part of the operation - it's a registered clinic and forms part of the Breakspear Hospital Trust (private). The best place for proper testing in the UK seems to be the following; Breakspear Medical Group Ltd (type this in) Hertfordshire House Wood Lane Hemel Hempstead Hertfordshire HP2 4FD United Kingdom Anyone in the UK thinking of being tested should google the above and go the the home page. When on the homepage click on 'treatments' (top of page) and select Lyme. You will see details of all the tests they carry out inc western blot test etc. With an inital consultation (and follow up) including the full range of tests available for lyme and co-infections costs will be in the region of �1500 if you go private. If anyone wants a copy of the e-mail they sent me outlining the basic details and how to proceed let me know. Brad please check out the above and let me have your thoughts ? I have not included a direct link - as my posts fall down a hole somewhere when i put links in. Anybody know of anywhere better ?? before I take / organise the plunge !!! Brad: Thanks for your persiverence / concern - it is appreciated. Sharon(uk): You may want to back track through some of Brad's previous e-mails and gen yourself up on the lyme issue. A large number of the symptoms cross match to labs - as such you should keep it on the radar - particularly if you pass the 14/16 week mark without full resolution of your symptoms. If you mention it to your GP they are likely to dismiss the idea - as they are not well informed on Lyme. Also the standard NHS blood test for lyme is notoriously un-reliable and only detects in a very small percentage of cases. For UK sufferers wanting to check they are clear (or not) of lyme - perhaps we should arrange to go to the clinic en-mass. Stay safe everyone, BINX1965 |
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Hi all, Anon - I presume you have been diagnosed with labs? The anxiety and insecure feelings you get with this are all normal when you have this illness. You are right when you say you feel better when you are doing something else to take your mind off things. This is why I am trying to do a few hours a week working in my friend's salon. At home on my own I just think how I feel all the time. Some of the advice on various websites do mention about Cognitive Behavioural Therapy if you have this condition which helps you adapt to situations whilst you have this condition and how to cope when feeling not good etc. Your doctor should be able to help refer you to someone. Equally a mild dose of anti-depressant such as Amitriptyline or a Prozac type med - if you can take them - may also help. Many people take these to help them through. It is also good to challenge your limits - a little! Don't overdo it otherwise , as we all know, relapse down the 'slippery snake' on our snakes and ladders game that is labs!! Keep heart and positive that things will get better. How long have you been suffering? Jemma - HOORAH! A holiday - fantastic! Albeit a short break, you will feel so much better for a change of surroundings and environment, even if you are having a bad patch, you still feel better! Hope you have a fab time. As for the twitching eyelid, I had that every day a few months back. It has since quietened down, but get it when I feel really swirly - so must be part and parcel I presume! B - good the scans are clear, but sorry your daughter isn't still right. Could it be Irritable Bowel? I would have thought that would have showed up. I had that some years ago, even though all my tests were normal that's what they concluded given that I had been through a stressful period of my life! Equally, it may be just a virus. Hope she feels brighter soon. The migraine issue is a thing they all latch on to. Proof of the pudding will be when I start this other medication - but want to talk to the neuro first. If it controls my migraines, but I still feel rubbish with this, then their theory collapses! As for the house - well - we have seen something we like, but until we get a firm offer on our property, then there is no point in trying to negotiate a deal. Even then it can all fall through if part of the 'chain' breaks if someone can't get a mortgage or whatever. Stressful business. I don't know how house buying and selling works in the States? Once you have made an offer on a property, are you then legally bound to go through with the purchase. Not the same over here - it is only legally binding once the sale transfer documents have been signed. Anyone can pull out before then. So we may find a house, they accept our offer, someone offers on our house and we all go down the line thinking everything is fine. Then just before signing, someone could pull out and we would be left high and dry! Nightmare! Anyway, second day at 'work' - early days, but it is making me so tired. Better days for all. Love and hugs, Gloria xx |
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I am 25 years old, perfect blood work, but have been stressed out for the last 6 months due to my endometriosis and possibility of not being able to have any more children. I have a daughter who is 3. I was told by my doctor that I have Labs. I was fine until about 2 weeks ago I awoke with a migraine in the middle of the night. I began to throw up and continued to have the migraine until I stopped throwing up and took Excedrin PM and went to sleep that next night. Then, I woke up at 3am with another migraine and took more Excedrin. Woke up the next day all foggy and drowsy....at 2pm began to have aura with blurriness, swirls of bright lights and by 5pm had a migraine again! This time I just went to bed because I couldn't see and I was scared. The migraine lasted all night until about 3am...when I finally was able to go to sleep. I woke up that next morning dizzy and drowsy. Figured it was the migraines and medicine cause they were PM and I took a lot the night before. Well, right about 2 days later, still dizzy, I began to be worried and went to the doctor. There was no change in dizziness with turning my head, laying down, just feels like everything is swirling slightly clockwise constantly and when I look at something up close its like I can't keep my eyes on it, but you can't tell if my eyes are moving. When I walk I don't feel that dizzy, its when I stop and look at something or turn my head after walking that makes me feel dizzier. Sitting still is worse than walking cause I still feel like I'm moving. My doctor gave me meclizine, but it just makes me sleepy. I have had instances at night before bed where I feel like the dizziness has stopped for about an hour or so before I lay down then I wake up with the dizziness again. I have felt some weird feelings in my left ear and right ear from time to time like you do on an airplane. The doctor told me to wait it out for a while, if I don't feel better in 4-6 weeks I need to come back to him. My question is, since I had the migraines before the dizziness started, how does my doctor know I didn't have a stroke without an MRI of my head? |
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Binx and all: Good for you! Glad you did your research. I have not heard of Breakspear hospital, but at first glance it seems to be the type of place that would treat chronic lyme. Typically, patients have too look into things like heavy metal toxicities, allergies, etc, when treating lyme and they do that. I even found a few sites that claims they are a bunch of unorthodox wacko's...which is typically what the mainstream medical community thinks about doctors who treat lyme. So that fits (this is a compliment for Breakspear, BTW.) Most lyme doctors will treat using a whole body approach and often supplement western medicine with aternative / homeopathic treatments. But..it works! I will continue to check and get back to you. Sorry to hear it will cost so much. But..isn't your health worth it? Here ist the symptom list again for lyme and co-infections (Babesia, Bartonella, and Erlichia..these require separate tests.) If you have or have had 20 or more of these at any time while you have had labs, strongly consider lyme & co. Symptoms of Lyme Disease, Babesia, Bartonella, and Erlichia: 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 Dena, sorry you have to feel this way. It does sound very labby and it is awful. It is scary and hard to deal with. With any luck you will be back on your feet in a couple months. There are some folks on here that have migraines along with the vertigo. If you feel like you need an MRI then tell your Dr that. He works for you, after all. On a happier note, there are people that recover after six weeks and are back to themselves. I very much hope you are one of those people. It is hard not to worry that something is seriously wrong with these varied symptoms that labs presents, especially in the begining. I felt as though it was kind of like aura when it first began, as things didn't look quite right, lights really bothered me, and, of course, the swirly dizzy feeling. I was a mess for a long time and still am from time to time with this. You get good at it after awhile, but never feel normal. I haven't had a migraine for some years now, but know the feeling of aura. My ENT mentions that I have a history of migraines a lot. I don't feel that they are related, but I am not a Dr. I'm sorry about your endometriosis and the stress it has caused you. Stress is hard on labs. I sometimes think it was stress that blew the labs up in the first place, but no one really know the inner-workings of the illness so we are always guessing. You need to have the testing that will put you at some sort of ease. It will not be helpful for you to sit and worry, as it will just make things worse. Get all the tests if you feel you need to. They tell you to wait because there is a very good chance it will clear up in the prescribed time. We on here can only tell you our own experiences and hope it helps you to better understand your own. I have had a lot of help from the great people on here and have felt a lot of comfort. I wish you the speediest recovery and hope you can feel some level of comfort. |
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Hello everyone, Update on re-starting driving. Been out for short trips every day this week with my co-pilot. No swirlies to report. Anxiety is creeping in. Sweaty hands on the wheel and that feeling in your stomach. Also when driving - i feel the cornering motion in my head and behind my eyes. Almost like my brain is being pulled around. Obviously the motion is playing it's part - although it doesn't feel as bad as when i am a passenger. Still feel some motion when i get out - but it's not too bad and quickly wears off. The concentration can give me a headache after a while - maybe tension type. Feel the anxiety is the main symptom when driving - once overcome - i will be OK. Labs symptoms update Tinnitis still hovering (comes and goes) Anxiety - bits and bobs - obviously worse when driving. Headaches (have had some classic migraine symptoms with these). Some fatigue Some positional type vertigo - made worse if lying in bed too long in the morning. But overall this is bearable. Last 5 days - 3 have been at 95 percent. Weather seems to play a part with this. Walking to shops every morning to get a newspaper. Extra walking during afternoons and evenings. Seeing doc later - may ask to try a low dose AD. Perhaps Amitriptyline - mainly due to it's anti migraine and anxiety /panic effects. Could get me over the final hump - if it doesn't put me back in bed that is. Don't want an SSRI as they wipe me out completely - so no thanks to that. Brad: I am now fully loaded with my ammo on lyme. Will pull the trigger at the appropriate moment - should improvement stall or go backwards. My driver and the fee is on constant standbye. I have spoken to Breakspear they have indicated that they get calls from lots of labs / syndrome type patients who can't find resolution with their ongoing symptoms. UK Government: Direct quote from Houses of Parliment June 2009 where Lyme disease was discussed (taken straight from minutes of the sitting): Ann Keen MP: The National Expert Panel for New and Emerging Infections (NEPNEI) concluded, in November 2004, that Lyme disease was the most significant public health vector-borne disease in the United Kingdom which often goes undiagnosed. On a final note: Hope everyone has a great weekend. Stay safe, BINX1965 |
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Hi guys, Sorry it has been awhile. This last relapse has been terrible. Have not really felt this bad for about a year. Needless to say I have been pretty depressed. This illness is so hard to understand. I just did not think I would be back at this place. This all started at the beginning of February when I had 2 straight weeks of bad headaches. After that the VN symptoms started again. Then just this past week, the headaches intensified to an awful level. I saw my new GP this week. I found out that years ago, he too suffered from VN. He said it was awful and that there are so many variants that can affect it, make it worse, etc. He also mentioned that, if there is damage (which for all us long termies there most likely is), it does not really heal itself. You start to feel better because your brain compensates for the damage. And of course as we go on with our lives, certain things will aggravate our progress...colds, flu, turning your head too quickly, walking in the dark, headaches. Tons of things. For the time being, he is taking steps to tackle my migraine problem, in the hopes that this will improve my VN symptoms. I have been prescribed Propranolol which is a beta blocker. Started it yesterday, and will go see him in a couple weeks to see if any progress. He said there are other options (Topomax, Tricyclic Antidepressants, etc.), but we will see how this goes first. Fingers crossed!! Jemma and B I too occasionally have the twitchy eye thing. I always go to the mirror and watch it. So weird! B I sure hope your daughter feels better soon. I hate the waiting game for medical tests. So frustrating! At least she has you taking care of her! Gloria So proud of you for doing some part time work! I understand how tiring it can be. A few months back I started volunteering. I do love it but sometimes it makes me so exhausted! The house selling process over there is crazy! Here, if you make an offer and it is accepted, it is pretty much legally binding. There are conditions in the offer (home inspection and financing), but these conditions must be satisfied within a shorter time period (48 � 72 hours). To all the newbies, sorry you are here. But this group is great! So many sets of ears to listen! Xoxo Lucy |
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Damn it, Lucy!! Have you had headaches with this before? Is this new? I was wondering what happened to you lately and even said it to my daugher. I wish you didn't have to still suffer, enough is enough. I hope you are starting to feel better. When I was younger I took wellbutrin for the supression of migraines. I don't know if it worked, but I took it for years and had only about 1 migraine a year. So maybe. I had a shot contraption in my purse for them too, imitrex. It only shortened the headache, but still had all the symptoms. I hate the aura. I'm thinking of you. Gloria, I have no idea how purchasing a house really works. I do believe you get a time frame to back out. I hope it goes fast and you get it done so you don't have the stress anymore. Have you had the headaches the whole time? Binx, I'm sorry you are having headaches too! Have you had them the whole time? Great job with the driving!! Wendy, I try to walk with my eyes closed sometimes and it works out ok. I fall a lot. I just fell yesterday and got bruised up again. I don't close them too often for that reason, although I usually fall with my eyes open!!! HOpe your great and feeling better. My girl is still ill and we are waiting to see another dr. I wish I could make her feel better. I am trying not to get too worked up about it. It's hard to see them be in pain. I have been ok. Made it 2 1/2 days without a pill again, but when I start feeling too bad a take on to be on top of things and be able to care for my girl and work. It is a juggle for sure. Hope everyone's families are doing ok!! Thinking of everyone!!! Good thoughts!! B;) |
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Hi All, Dena, It has been two years since I came down with labs. I would say that I am 99.9% recovered. It was a long, tough battle. When it all happened two years ago, I felt for sure that I had a brain tumor. I had a CAT scan, MRI, blood work...nothing! Labs is awful at playing on your nerves. The panic attacks were awful, the swirly head, the nausea, the exhaustion, the floor moving under your feet, the lights in the grocery store, the rocking feeling all day, the feeling like you are being tilted backwards in a chair, the eye twitching, the headaches, the tight neck and more. I felt all of the above for about a year. All of your fears are real and all of your feelings are real! Labs is a terrible sickness because most doctors don't know much about it and they all feel it will pass in a few weeks. As all of us on Sharp Blue can tell you, it doesn't always work that way. Labs is an up and down recovery process. It is NOT linear. You will slowly get better and you will also feel bad just when you think you are better! Today I walked into a store and bam! I felt the floor move under me. Like I was walking on marshmallows. For me now (2yrs later) my brain must compensate because it was a blip and then it was over once I moved around the store. I have found that I get a swirly head feeling right before and during my period. I still get it! Not sure if it will be always, but I am no longer living in fear of it. I know what it is and I know how to deal with it. That said, I feel normal 99.9% of the time now. My recovery consisted of Vestibular Rehab Therapy. I took Zoloft for the anxiety. Zoloft also helps produce serotonin, which can help heal your vestibular nerve quicker. I also began a vigorous exercise program. I ran everyday. I still run. I try hard to think of all the positive things that have come out of my having had labs: I can now run 12 miles no problem, I work out 6 days a week, I am much calmer, I don't panic over small illnesses anymore, I never take my life for granted, I feel complete compassion for anyone who is terminally ill or that has had a long illness, I have met all of these wonderful, supportive people on Sharp Blue. With out their support, I would have lost my mind! Labs happens for a reason and you may not know what it is yet, but you will all discover the positive side of labs! Keep the faith!! I miss you Gloria, Claire, Jemma, Shirley and if I forgot anyone I'm sorry! Melissa |
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Dena, I didn't mean you never ever will feel normal!!! Just while you are dealing with this. It is a process and has to run it's course. B Melissa, I think your way of thinking about labs is excellent. I feel that I need to pay better attention to my health and my body and intend to when I am back on my feet. I'm so glad you are so much better and I admire your ability to run all the time. I'm not a runner, but I am a hiker. I can't wait to do it everyday again! I hope you are 100% soon!! Thank you for the reassurances! |
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Just to say everyone it does get better, I actually went to have my hair cut today, the last time i had it done 6 weeks ago felt awful...really panicky, like jelly and dizzy, just wanted to get out! Today my husband took me there, I felt a bit iffy on the way and did some deep breathing exercises, went in and coped so much better today, I could even talk to my hairdresser, last time i felt too sick to do this.....what I am saying is that I feel I am getting better again after this flare up which started early December....and what I would like to say to you all from experience you will get better! ....I feel that when we do improve and do a little more it all helps to boost our confidence, I even went into a shop today on my own to get some coffee, I even chatted to the guy on the till, in the past I hated to see a queue and would not have been able to hold a converstion! .....I don't just want to talk about me but it is really to encourage you all...its only those who have had this that really know what a life changing experiance this is, love to you all and especially those who are having a tough day, please be encouraged! love to you all Gill x |
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Just popping in to say 'hi' to you all. I've just passed the 6 year mark with all this c*** and sorry to see that there are still so many people on this board. Gloria, Jemma, you two have been here a long time now. How are you both? Nice to see you are starting a new job Gloria, are you actually feeling better or just coping better? It's the same old story with me but looking back over the last six years, last year was definitely my best! Am I ever going to fully reecover? I can't really see that I am, it's part of my life now though I do keep fighting it with plenty of walking and never giving in to it! It's not really stopping me from doing things now (yes Gloria I still take the stugeron when needed!) I've had a stinker of a head cold for the last week with no increase in dizziness or balance problems so thats a good sign. Brad, can I just ask about this Lyme Disease - if you did have symptoms of that would they be ongoing i.e. 24/7? I obviously do have some of the symptoms of Lyme's but my symptoms can disappear for a couple of months and then come back again or they can be very mild OR totally debilitating. Take care Sandie
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God bless this forum. Thank you everybody for sharing about their bouts with labs. I'm 28, perfectly healthy, and then came down with the symptoms a little over a week ago. Felt like I was going to die! The worst (and this seems to be a common theme in lots of your stories) was when I went to urgent care to check it out. They told me it was just anxiety/stress! When I brought up labs, they told me not to WebMD myself... just frickin' wrote it off as paranoia. I feel like I'm on the upswing and, based on many of the stories on the site, I feel fortunate to have a somewhat mild case of this. |
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Hi Everyone, Sorry I feel like a stranger just tried to catch up with all the posts, so many to read so many sufferers!! B I really hope you have some answers as to what is wrong with your daughter, you dont really need the stress of that when you have your own problems, being a Mum myself I know that you will be focusing everything on her so maybe that would be a good thing in the long run as you may be able to 'ignore' your labs! I really hope she is okay x Gloria well done with working again another huge hurdle you've jumped over cant be easy but hope its helping you focus on something else (well at least for a few hours a day) I hope you dont have loads of visitors looming as the easter break approaches I know what we are like for entertaining!! x Jemma Hope your okay x Hows the VRT going are you still doing it? Wendy hope you are coping with everything Easter hols looming! x Shirley hope you are recovering from your epley, time you had a break from this x I am still up & down the 'gameboard' doing my VRT daily. Exercising every day now running 3 miles or going to the Gym, it really helps physicaly & mentaly. Keeping up a healthy diet etc, Its been almost 14 months now I do have better days than before so focusing on the positives!!! Melissa lovely to hear from you, you are an inspiration to us all & give us hope, your running is amazing I aim to up my miles soon but dont think I can quite get to your level. x Ash hope your okay & keeping up the good work x Everyone else thinking of you all Claire xx |
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Hi everyone Melissa so nice to hear from you and you are still doing well! Like Claire said your fitness level is amazing. I am starting to think the key to recovery is fitness and exercise but I could not even run 1/4 mile let alone 12 miles!!! That isnt due to labs, I am just not physically fit at all. Must start doing more walking now the lighter evenings are approaching in spring. Sandie great to hear from you! I wondered what had become of you. I know how long you have had this now and I do have a feeling I could end up being like you in that regard. But wanted to know if you go for periods of being totally symptom free? What are the symptoms you have now and do you feel you are still improving slowly? B and Lucy thanks for your info on the twitchy eye thing. Mine seems a bit better this last couple of days since my ear stopped being quite so crunchy. No doubt it will pop up again in the future! Gloria how is the job? do you find it tiring? That was a big issue for me when working, the fatigue. How does your balance feel when dealing with people, talking, on the phone etc? Based on everything I have read I still think my problem is a vestibular one, probably Vestibular Neuritis but of course I would love to have the Lyme Disease testing but could not afford £1500 to rule it out. Whilst I do have some of the symptoms listed for Lyme disease (there are so many above) I really do feel that my problems stem from my ear and a balance disorder which has a knock-on effect on other parts of my body. From what I have read about people suffering with Lyme disease I haven't come across a description where the main problem is dizziness/off balance feelings. I know that can be a symptom but often not the main one for Lyme. It is so confusing though and worth checking for but for us in the UK it seems an extrememly difficult and expensive route to get proper testing done. I guess if my condition started going worse then I would try to raise the funds somehow (re-mortgage the house?!!) but at present I feel there is slow improvement in my condition. I know it is not normal to suffer from uncompensated labs/VN but if there is actual vestibular damage that is permanent, and experts say that compensation can often take 2 to 5 years. For serious damage or total loss of vestibular nerve function the symptoms are permanent so it is a pretty serious condition for the unlucky few. For those who can afford the Lyme testing I really hope it brings some answers for you or at least peace of mind. Ash how you getting on? Any success with the new VRT programme? Gill thanks for the positive message, glad you are on the up. Kimball hang in there, you seem pretty positive for one week into this so I am sure you will recover quickly! Take care all xxx |
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Hi Jemma, Yes, over the last year I have been symptom free for a couple of weeks at a time. I mostly have problems the week before my period and during it. In fact I would say that this is the worst time for me now and the two weeks in between are good.But I haven't had a serious relapse in over a year now so that's good news. Saying that, I still couldn't manage to work because nobody would take me on two weeks working, two weeks off! I have been a lot better since packing my job in and often wonder whetherI should have maybe taken a year or so off in the first place and I would have been ok now instead of being on that never ending rollercoaster. The symptoms I have now are mostly dizziness, the balance problems are not nearly as bad as they were and quite infrequent now. Also, still suffer from that 'cabbaged' head feeling. Jeez I didn't realise it cost so much to have that Lyme test done! No way I could be affording that either! I was diagnosed with Vestibular Neuritis Jemma and those are my main symptoms, dizziness, fullness of ears, weird head feelings and balance problems. Can I ask where you got the information that it can take between two to five years for recovery for some? I am at year 6 now but have had improvement over the last year. Also I have always said that it should depend on how much damage is done to the nerves as to how people recover after the virus has attacked - i.e. greater damage = longer recovery - makes sense to me. No-one has actually said that to me (medical people) and I have never seen it written down so would be nice to have it confirmed. Whilst things are better for me I still live in hope that it will go conpletely and I will get my life back. I'm off to see Enrique tonight and I'm not feeling too good so I hope that goes ok but this time a couple of years ago I wouldn't even have attempted that so there's progress for you! Take care Sandie x |
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Hi folks: Sandie: To answer your question...lyme is classic for occurring in a waxing / waning or relapsing / remitting pattern. For many, it isn't 24/7 but may come in cycles / flares. Cycles are often 4-5 weeks and for women can surge near their "monthlies." I have met many people who believe they have been ill for 20+ years. They had not idea it was lyme and were able to control it with diet, supplements, and rest initially. But over time, they got worse and worse and finally they didn't have any more fingers left to put in the dam. Some crashed after getting re-bitten, etc. Even me...I was on an "upswing" from labs even before I was diagnosed. Since then, I have continued to improve but still have flares from time to time. Jemma: I don't have a scientific report..but I can tell you that in my local support group south of Boston 50% of the people said dizziness / vestibular problems were their #1 problems. Not all...but many. It is not a "classic" lyme symptom. Some have pain, others, like me, don't. Some are dizzy..others arent. I believe you do have a vestibular / balance issue. The question is..what is the ROOT CAUSE of that issue? For me, and many chronically dizzy people, it was lyme and a co-infection called Babesia. There are likely other doctors around who may be willing to give you the IGENEX test which costs $200 US. Cheers! |
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Hi Sandie Wow I think I am very similar to you, I too tend to have the same slightly better two weeks and then worse two weeks (approx) each month. This has become more apparent as time has gone by. Did this pattern always happen for you or has it developed more recently? Also despite other fluctuating symptoms which come and go such as neck pain, racing heart, fatigue etc, my main issue and the one underpinning it all is the balance/swirly head thing you describe. I have read the 2 - 5 year period for compensating on several websites and in a book I bought on this issue and from various posters on message boards. Here is a link to one of these for your info... http://www.healthboards.com/boards/showthread.php?t=578129 I still live in hope it will go and at least you have seen a big improvement in the last year even if you are not symptom free which gives me hope for the future. Enjoy Enrique Sandie and got my fingers crossed you get completely better one day, sooner rather than later xxx |
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Hello everyone, Not wanting to complicate the mix any further. For those with recuring / worsening problems especially around the time of the month. Underlying (boarderline) thyroid issues stimulated by hormonal changes can produce some labs type symptoms including anxiety / panicky feelings / tinnitus / palpitations / racing heart / hearing distrbances / visual disturbances / fatigue / balance issues / dizzyness / stiff neck etc. You can speak to your doc and get a straight forward blood test for thyroid activity. But remember to go for the test when your symptoms are at their worst. It's just a thought ! and maybe one to cross of the list if you need to. My update - still battling the anxiety left-overs and learning to drive all over again ! Bit of whistling in the left ear. Been having lots of excellent days (at 95%) over the last week or so - which (of cause) now makes any slight dip feel ten times worse. Headaches have eased off - the worsening of these may be linked to re-starting driving. Not sleeping too well - waking a couple of times during night now - usually after some whacky dream. Drug free at present. My thoughts and prayers are with you all. BINX |
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Hi Sandie/Jemma I too have the whole 2 weeks on 2 weeks off going on whenever I mentioned this to any experts they seem to glaze over!! my doc did suggest I go on the pill!! didnt fancy that as I am now 40 & prob having hormonal changes anyway! I have had my thyroid checked since this all started (interesting Binx) but may go back & check again not that I want to take anything pill wise at the moment. Have had an okay week or so but now approaching 'that week' so will see how it goes,had another run today will prob go everyday this week it really does help Jemma, just a brisk walk would be good & work your way up, you dont ever have to run but walking everyday will help, do you have a dog or a friend with one? Hope your okay & everyone else, off to see my Therapist tomorrow have been doing my VRT every day for the last 6 weeks so am expecting a gold star from her Claire x |
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Hello everyone, 14 WEEK UPDATE Just about to jinx myself !! Physically at 99% today - only symptom some slight T in left ear. Took a couple of ginko last night and these may have given me the extra few percent - also the weather must be helping. Feeling good. Mentally at 30% but going upwards - still battling the labs induced anxiety feelings - but these are slowly subsiding. Now need to push this up to the 90% plus mark. Got to get my 'life confidence' back after taking this whack. Driving again - but with sweaty paws. Hope to have mastered this fully by the end of the week as i'm out in the car every day now. Still some slight motion on getting out - but this subsides quickly. My world is suddenly getting bigger again. On the lookout for a snake !! Stay safe, BINX |
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Hi Brad, thanks for the information. Once diagnosed with Lyme what is the treatment? I am at the stage now where I think I manage my symptoms pretty well.I haven't visited my ENT for years as I am of the opinion now that there is nothing that they can do. But,I could be in the risk group for this Lyme disease as I have always been a walker and spend hours walking around Scotland during my holidays and that's one place where there must be loads of the little blighters - plenty of heather! Jemma,before I gave up my job, i.e. for the first four years with this condition I had symptoms 24/7. I would have a horrific relapse every six months or so where I suffered massive dizzy spells/vertigo and had terrible balance problems which would last for months during which I was unable to work or even very much take part in life! I would get better, go back to work, then relapse again. In the four years that I was employed, I had nearly two years off sick. However, since I left work my symptoms have been less viscious and are definitely more linked to my 'monthlies'. This has happened for the last two years. As I am at that certain age (lol) i.e. menopausal, I was 50 in December :-(, I sometimes miss a period but strangely still have more dizziness. About your palpitations, have you ever had a ferritin test? My ferritin was very low and I have been on iron supplements for over two years to get my levels up. I suffered from palpitations a lot and now I only suffer from them very rarely and I think it might be because my ferritin is normal now. It's worth checking out as it can also cause dizziness if you are too low. BINX1965 - the thyroid theory is a good one but I have also been tested for that! Thing is, apart from this ear problem, I'm pretty healthy! Glad you are doing well and one of the best things to do with this condition is to have a positive attitude and get on with things! Claire - yes, I notice a lot how doctors always move on when you mention something to them - very frustrating! Claire, I don't run and never have but I can walk, walk, walk and this is the best thing that anyone with this condition could do. It gets the brain stimulated and it makes you feel good. Can't emphasise that enough. Enrique was brilliant but I was very dizzy as it is that time of the month! We were in the balcony and as you will all know you have those little bucket seats and a 'ledge' to stand on. If we could have stayed seated that would have been ok but everyone stood up so I had to and I felt like I was standing on a tightrope about to fall off, I was very wobbly and have the bruise on my leg to prove it where I was pressed into my seat(standing up), scared to move! But I still enjoyed it. Just goes to show how this thing pleases itself as last year I was at the Green Day concert, right at the front of 56,000+ people, giving it my all and not a single dizzy spell. Take care everyone Sandie xx |
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Hi! I've been having some good days still. The thing that makes me crazy is the foggy feeling I often have. That caused me anxiety. I don't know why, but it does. My muscles are tight and making me very uncomfortable. The stress of my daughter being ill and missing so much school is likely the culprit. She is unchanged and in a considerable amount of pain. It is very frustrating. I can't do anything for her and that is the hardest part. My mom is making things hard too. I have decided not to call her for a few days. She means well, but sometimes she is not good at it. I keep trying to go without the meds, but only make it a few days a week so far. So...still one day at a time. Binx, you sound like you are on the mend. I really hope so. Do you find that Ginko helps the symptoms? Best of luck for the driving. Sandie, This has been a very long journey for you. Maybe you are coming to the end. I think you are brave to go concerts. I don't know if I could. At least it is dark! Sorry it has been so long. Claire, you sound like you are doing fairly well. I think it is great you run!! I couldn't with my "front load". I do love being outside and hiking and walking. With my daughter ill I have only been out a few times the last couple weeks. I hope your kids are great and taking good care of you! I benefit greatly from the pill, thought I'd share. I take it constantly and don't have my "time of the months". I'm glad of that, especially during this horrible stuff! Jemma, Lucy, Gloria, Gill, and all else, I hope you are doing great and on the up!! B |
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Hi All, Me too! I feel swirly headed a couple of days before my period! I too have had a thyroid test and all was fine. My GP thinks perhaps because during my period, I retain fluid. We retain fluid in our ears too. Who knew? lol So once my period comes I feel better. As we all know on here, retaining fluid in our ears equals dizziness!!! Keep the Faith! Thanks everyone for your warm compliments! Melissa |
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Hi B, Thanks for your kind comments, I don't know how long you have suffered with this but believe me I didn't go to concerts at all for the first four years with this! Indeed, even though I went to work three days a week for the first four years I very rarely went out apart from working. I suppose I was ok at work because everyone there knew what I had and would help me but it's different when you are anywhere else. This condition has controlled my life for all this time but over the last year things have been a lot better for me. It is always there lurking and certain things do make me worse but hey at least I can do more stuff now! Melissa, I carry an awful lot of fluid before and during my period and can put on about 5lbs in weight! You are definitely right about the fluid in the inner ear being affected during this time. I can't wait to get through menopause and see if it makes much difference - long wait there though, it takes flipping years lol! Take care Sandie x |
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Hi all, My goodness - a few days away from this site and so many people. Sandie - how wonderful to hear from you. Have often had you in my thoughts and hoped that you really are over this mess! Well, maybe, after 6 years now it might just have had enough of your body and will go away!! It can leave mine at any time NOW!! 20 months for me now and although better, still have some sort of symptom every day. Mostly with me now it is the headaches, muscles aches, tight neck which seems to have a mind of it's own despite physio and everything else I throw at it. I seem to have the foggy/fuzzy brain with the intermittent unsteady, swirly feeling. Compared to you though am still an infant LOL!!! Glad you enjoyed the concert - we are off to see Kylie next month. I missed Take That at Wembley in 09 when all this hit me and haven't had the guts to go to another one - so fingers crossed. Like you I've adopted the Stugeron when I need to. If my wretched brain hasn't compensated after all this time despite all the VRT I'm doing - then pills it will have to be!! Do keep in touch now and again Sandie - so lovely to hear from you. Hope all the family are well. Holiday plans this year? Take care xx Melissa - you on here too! I'm thrilled for you that you seem to have minor stuff that you can cope with. Great to hear from you. I admire your running 12 miles - athletic or what! I'm doing more sedate stuff - Pilates, power walking, cycling and a bit (tiny!) of jogging. Am no runner really but this is for my bet to have a go at water-skiing in June after 10 years or so!! Mad women that I am!! Need to be a lot stronger than at present. Hope all your family are good too. Take care and continued good days - no - excellent days!! xoxo Claire - did wonder about you too. Good to hear from you. Like you, have been doing the VRT stuff. After all this, I think it helps as my physio said - we need to keep reminding the bits of the brain that have taken over to keep doing the job! I'm not getting up tight about though it if I have a day or so where I cannot or forget to do it. I don't think it cures. Possibly helps, but doesn't prevent the relapses. What is your view? What are your plans for Easter? I'm not intending to have any major 'Gloria's B&B' guests except for the Royal Wedding week-end. Am slowly learning that it is not worth overdoing it to the extent , as at Christmas, when since I have really not come back up to the level I was before. I might offend a few people - but tough! Anyway, hope you continue to do well - let us know if you get your Gold star from your physio!! xx Jemma - Like you, I feel mine is VN - if there is a difference. I have so many horrible heady things going on and don't feel normal at all since the beginning of all this and have never got to 100% really. What can we do though - I think it is just having a load of patience and seeing what time does for us. I've exhausted every medical, alternative therapy route - including the Lyme thing. Had 2 tests just in case one was incorrect. BTW, i got the second one done on the NHS by my own doctor. I explained that I had it on good authority that the symptoms I have are similar and that I had been to North Wales a couple of months prior ( a known area for ticks - Snowdonia). I mentioned the Igenex thing and she reassured me that they too have a specialist unit where they send the samples. It is genuine as she said if they got it wrong they would be on a hiding to nothing with copious amounts of litigation to deal with. Suppose she may be right. How are you at the moment Jemma? Hope you are on a ladder on our gameboard!!xx Binx - you sound like you are doing fantastically well. Know what you mean about jinxing yourself by having positive thoughts that you may be conqueroring this thing at last. Maybe you have the power to do just that!! Keep doing great xx B - glad you are having good days. Know how you feel with the foggy/fuzzy brain stuff and all the muscle stuff going on. I have a regular lady who does my neck massage and she can't believe that so many of my muscles in odd places - like the sides of my back are so tight and sore, when I've done nothing to cause it! So sorry to hear your daughter is still not right B. Have the results come back yet? This is not helping you at all, but try and keep positive. Closest relatives can be more of a hindrance than a help sometimes with their good meaning intentions. They think they are helping with suggestions, but can just make situations worse. Thinking of you both B xoxo Lucy - glad you got some meds for your migraines. Let us know how you get on. I tried Propanolol a few years ago. It didn't do anything for me, but I've heard it has helped a lot of others. Good in one way that your doctor had VN himself - a medical person who really knows what this is all about!! Encouraging too, that he talked of it in the past tense - so hope that it does go! Keep well xx Well, my head is like it's been slashed with a hundred razor blades it is so sore. Odd, odd odd!! really tight and fuzzy. Went to 'work' Monday afternoon, not feeling great but thought I had to go. Got there to find a carpenter installing new cupboards and constantly drilling into the wall. I made my apologies and went back home. OMG could not have taken that! It was as if he was drilling my head. Still can't take loud noises yet - God help me at Kylie Concert next month!! Having done 2 afternoons last week and upped my exercise, my hubby has said no wonder I feel bad again. My theory is that if you don't stretch and test yourself with this thing, I'll stagnate at the level I'm at. Anyway, will see how it goes again this week. If head not good then I may suggest going down to do one afternoon for a few weeks and increase from there. It's not as if it is even a whole day. I feel so useless that I can't even do a few hours voluntary work looking after a reception in a hairdressers. Not so challenging is it?!! I HATE this labs - it's doing my head in in more ways than one!! Anyway, trying to stay positive, keeping the faith and all that. BTW, hello to Gill and thank you for your positive post. Hope you get over your blip and for it never to return. Welcome to Kimball and Dena too. Love and hugs to you all. Gloria xx |
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Hello All, Well I didnt make my VRT appt today, my youngest has been off ill with nasty cold since Monday so had to cancel. Cant get another one til May 5th now so obviously still a lot of people out there needing VRT appts!! Anyway will continue with my current exercises til then. Think I may be coming down with that cold now too & with that horrid week too (early again) prob not the most positive time to see her!! Having said that I do feel better than previous weeks/months (sshh dont jinx it Claire);) Sandie, Enrique!! MMmm very nice too, better than Green Day! :) B I expect you are feeling very stressed at the moment and that would explain the extra symptoms. Stress will always aggravate mine too to horrible extremes sometimes. I really hope your daughters pain subsides soon along with your stress! x Gloria, think your hubby is right when we overdo things it def holds back our recovery! I do feel I am out of my post Xmas blip finally maybe I am just getting better!! God I hope so!! Im going to see Take That in July yipee!! cant wait. Not long til my hol to Portugal too (just dont mention the flying part)!! Sorry things arent great for you at the moment, just keep doing what you are doing with gentle exercise its got to be good for us!! I will continue my VRT still not sure if its a cure but it must help. x Anyway love to everyone else Claire xx |
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Hi folks: Binx and others....I have heard from the excutive director of ILADS (www.ilads.org) This is the group of doctors who believes lyme is far more common, easy to acquire, difficult to test for, and difficult to eradicate versus the mainstream view. They said Breakspear Medical is a good group in the UK for lyme. So...nice work on that. Regarding the adrenal issues...this could be a cause..but again, what is the ROOT? Why would your adrenals be malfunctioning? Here is an excerpt from Dr. Richard Horowitz (one of the leading lyme literate MD's in the USA.) -"Dr. Richard Horowitz mentioned...40% of his (lyme) patients have adrenal disfunction." Here is the source: http://www.betterhealthguy.com/joomla/blog/216-ilads-2010-conference-takeaways B: Noticed you said you have "brain fog"...another common lyme symptom. Brain fog + dizziness + anxiety + etc....sounds very family to what I had. All common for lyme, babesia and bartonella. Keep pushing for ROOT CAUSE. WHY are your adrenals malfunctioning...WHY are you having vestibular issues? Most lyme doctors believe it is all related to an ongoing infection. Hope everyone is doing well. |
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Hello everyone, Still holding at 99% - with a few mild background symptoms - just as a reminder. B: Ginko. I did try this stuff in the early stages but noticed little / no difference and stopped after a week. Over the weekend i noticed the pill bottle at the side of the bed and just took 2 for the hell of it one night. Within 20 mins i noticed a strange sensation in my ears - most pronounced on the left side - which i think is the bad one. I could hear / feel a pulsing / flowing and vibrating / buzzing sensation inside the ear. At first i thought the sensation was in time with my pulse - although - when i checked my pulse the sensation was at least twice as fast. It was not unpleasant and i lay an observed it for 10 mins then fell asleep. When i woke next morning the sensations had gone and i felt noticably better. I know Ginko is supposed to support increased blood flow around the head / brain / ears etc and i certainly felt something happening - which was very noticeable at the time. It's also the only instance where i have taken 2 of the 30mg pills at the same time. I have now carried on taking 1 pill morning, noon and night (total 3 per day) with food. I may even try another double dose over the weekend. Still driving and still battling the left over anxiety. Anyone really struggling with bad anxiety as a result of what they've been or are going through should have a look at Charles Linden's - Linden Method website - i would highly recommend it. This guy went to hell and back with anxiety and panic disorder and completely / fully recovered. At one stage he was taking over 40 mg of valium combined with high doses of anti depresant / anti psychotic medication every single day. I purchased the Linden Method package from here and it was worth every penny - superb instant results !! Doc offered me a prescription for a mild dose of amitriptyline today - said i would think about it. Apart from my dabble with the ginko I am currently drug free - primarily in an attempt to avoid rebound headaches and give my brain a rest from the chemicals. As always my thoughts and prayers are with you all. Stay safe, BINX1965 |
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Hi all, Still recovering from this nasty setback. A little better every day, but so slow. I have to say that this latest blip has really brought my spirits down. So much progress and then bam! Very cruel. I see the posts on everyones cycles. I have not really noticed any specific patterns...if anything, I tend to get headaches after my period. I will have to start tracking that. B I have always suffered from headaches, but they have significantly worsened since I came off the pill a few years back. Almost like my natural hormones were super excited to get moving again (and punish me for suppressing them for so long). And yes, I too experience the foggy head often. More so when I know my brain is working hard to get back up to snuff. I absolutely hate the brain fog. One of the worst symptoms of this for sure. I am so glad to hear that you are having good days, although saddened that your daughter is still ill. Poor thing...I really hope she gets better soon. Stress makes this darn illness so much worse, but you seem to be taking it as best you can. My thoughts are with you two! Claire Congrats on your VRT and fitness regime! I hope to get back on that train too. This blip has made me cease for the time being. You are so right...exercise helps boost so many things mentally and physically! Hope that cold bypasses you!! BINX Glad to hear of all your progress! Keep sending some good vibes to us!! Gloria Oh the loud noises! I would have smacked that carpenter upside the head! I understand what you are saying about your job. I always ask myself why sometimes it is so hard to do only a couple of hours of seemingly easy work! I used to work 50+ hours per week, early days and late nights...with no issues! How things have changed...and I know that I must respect what my body is saying...although I do challenge it every now and then. Sometimes it works out, and sometimes it does not! Here is to better days, Lucy xoxo |
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Hello Gloria!! Hey, thanks for thinking of me! Yes, you would think this condition would get sick of me and move on but no such luck for me! I think it loves me too much! It still bothers me in a sense that I worry if I have something big coming up and I won't be able to attend but I still use the stugeron and that works about 90% of the time which is good enough for me. When do you see Kylie? I do hope you are ok for that. Do you remember when I went to see Green Day the first time in Oct 2009? I had taken about five stugeron during the day and it did not work. I was so very dizzy and my balance was all over the place. At 7pm I was lying on the hotel bed and the concert started at 7.30pm. I was in a really bad way. But, my youngest daughter was desperate to see them and I dragged myself down to the arena (hotel was attached) clinging onto her for dear life. Then, as soon as I sat my bum on the seat it all passed and I had a brilliant night. That's the trouble with this condition, it hits when it fancies, and disappears just as quick. As for the family, my two oldest finish Uni this summer, so they will be sailing off into the sunset, leaving mammy behind - lol! And, holidays? Swore I wasn't going back to Scotland this year as the weather was dreadful last year but guess where we are going - Scotland. This time we have a lovely log cabin on the riverside so if it rains non stop again we can look at the river. Last year it was a caravan with no view! Water skiing Gloria, has this condition sent you mad as well! Still won't risk flying with this condition. Gloria Labs and VN are considered to be much the same thing by the medical world but my balance consultant who I saw in the first year with this said he considered that I had VN because I had balance problems and that my balance nerves were probably damaged. For what that is worth, you know how I have no time for these medical people now! Ooh, Gloria a little tip about the Kylie concert, take some earplugs with you. I got some off the internet which are brilliant. In my first few years with this loud music was one of my triggers as was any loud noise and still sometimes can be. These earplugs stay put not like other ones that keep popping out and you can still hear brilliantly they just take away the 'loudness'. You can get them here: http://www.snorestore.co.uk/acatalog/insta_putty_earplugs.html#a582 Gloria, don't you dare beat yourself up about not being able to do this little part time job. You are doing very well even attempting to do this and you should praise yourself for that. I seriously believe that trying to hold down my part time job made my condition so much worse. I managed to keep at it for four years but looking back it maybe wasn't such a good idea. My social life was non existent because I would be in my bed an hour after arriving home from work! Anyway, try it by all means but if you can't do it, don't push it, your brain is working very hard trying to cope with what is going on in your body so don't overtax it! Claire - how very dare you! Billie Joe is far sexier than Enrique! Mmmm well I wouldn't refuse either of them lol! You'll never guess what I did, what a numpty, had my wonderful Galaxy S smartphone - took loads of footage - got home and tried to view - nothing there. Aagh had forgotten to press the save button. I couldn't believe it. Sorry to hear your daughter's not well. My youngest has had that too and she was off school for 8 days. It's a very nasty virus that one. She passed it to me but it only lasted three days for me - good news was it didn't trigger an attack of the dizzies. Hope you don't get it too. My sister is coming all the way back to the North East to see Take That because she couldn't get tickets for London (she lives in Colchester). Guessing she likes them! Brad, on the UK news this week, a European tick has now got a grip on the UK, mostly in the south for now - great! Take care everyone Sandie x |
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Brad, I am interested in being tested as I know for a fact I have been bitten by a tick on at least two occations. I am outdoors all the time. Next time I go in I will ask. Don't really have anything to lose except a smidge of blood! I have always wondered since I had the the weird symptoms for a year before I got it full blown. It's all weird. Lyme or not. Thanks tho!! B |
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Hello everyone, UPDATE END OF WEEK 14 Been driving every day - even drove to work today - went in and had a cup of tea with colleagues. Good stuff ! They said I looked like i'd lost some weight - i'm not surprised - the fires of hell were burning hot during my recent visit on the labs express !! I am a governor at a local school - visited them this morning - thought watching loads of kids running around would help my brain get used to rapid movement. A few more visits next week me thinks. It was also good for the soul. Symptoms Some triggers still make me feel off balance - this happens mainly in the morning. My head then must become adjusted. Some carpet patterns are also shockers. Not really had much recent exposure to the fluo's so can't comment. Intermittant tinnitus - comes and goes. Most nights now i don't have to fall asleep to the chorus of hissing and whistling. The rotten anxiety stuff - still hanging around. Keeping busy pushes it down. My anxiety levels have obviously adjusted to a new norm - the labs norm ! and now need to be re-set. The more i do the more the anxiety receeds. At it's height I didn't want to leave the house - so it may take a while to sort. I am using some of the anti anxiety techniques from Charles Linden's - the Linden Method and they do work. For a non anxious person this rubbish hit me the hardest and i always knew it would be the biggest hurdle to full recovery. It will be defeated. My doc seems to think that it takes at least 6 months for residual symptoms to burn out - although they may not go completly - you may still get the occassional reminder of your labs experience. Meds Now firing the ginko after giving it a second chance and noticing improvement. Ratings Physical 99% and holding (god bless the good weather) Mental 50% but edging up a little more each day. Brad: My lyme gun is still loaded - any slippage with this thing and i will pull the trigger without hesitation - no problem. We don't get many years on this planet. My thoughts and prayers are with you all - as always. Stay safe, BINX1965 |
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Hi Everyone on this lovely sunny day, Sandie please could you tell which ear plugs you found effective, I struggle with loud noise, I went to the site which is great but not sure which ones to choose Love to everyone Gillx |
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Hi all, I know it's been a while since I have written anything, but I promised I would post progress as I went along. I don't want to recap all of my previous posts, but basically I was diagnosed with Lyme after getting an IGENEX test (thanks to Brad) after suffering from spaciness/tinnitus since last September. I have been on antibiotics for almost 4 months now and am currently on IV antibiotics while my insurance will cover it. Honestly while there has been some improvement, it's been at a snail's pace. At first, I could definitely tell the antibiotics were working as I had a few definitive herx reactions (i.e. the bacteria releasing toxins as it dies off). This basically led to a few more symptoms and feeling much worse but only temporary. I'm pretty sure I am winning the battle against this crap, because I haven't had any herxes at all lately. I've just been slowly recovering. In fact, I can do many of the more hardcore antibiotics without feeling much at all. The labs effects, which are what I was hoping to rid myself of, are still present but to a much lesser degree than at first. I can now sleep normally on one pillow and stores aren't as much of an issue. But some of the spaciness still remains and the tinnitus seems like it will never go away. I'm not sure how much longer to take the drugs, but I know that I am relatively early in treatment compared to most people. I will keep going at it for as long as it takes. If it is still Lyme and co., then I figure the drugs will kill it over time. If it's not, then the labs should get better over time. In other words, if care is taken, then it really shouldn't hurt me to continue taking the antibiotics. For those of you who are sick and have not been tested, I would recommend you at least do so. Believe me, I thought I could never have this nor did I even believe in it really. I mean I don't remember getting bit by a tick at all. It all makes sense looking back, though. I always thought a week of antibiotics would kill any bad bacteria in you body, but Lyme is totally different. It doesn't reproduce like mad like other bacteria. It's very, very slow growing thus the reason it takes so long to get rid of it. It may or may not help rid me of the Labs any faster by treating it, but it will certainly prevent future problems if I just left it alone. Is there a magic cure for Lyme or Labs in general? Unfortunately the answer is no. It takes ridiculous strength and resolve to get through something like this as I am sure all of you know or are finding out. I went through many, many bouts of depression and fits of tears. Why me? Why now? I was never really sick at all before this, at least comparatively. It's a nightmare that is difficult to wake from. Finally I realized that I am getting better, and I see the hint of light at the end of the tunnel. This is a life-changing illness for me and many of us. When (yes, "when" not "if") I get my second chance at a normal life, I am not going to take it for granted. The plus side is that my blood pressure is back to better than normal levels (I was always barely hyper-tensive before) and my weight is back to normal (lost 40 lbs). A bunch of this is due to diet change which is recommended by my doctor. I figure why not? I am chiseling a new me out of all the pile of crap that's happened. I hope that everyone else here gets better and does the same. We WILL get through this. Keep on keepin' on, Chuck |
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Dear all, havn't posted for a while again, but guess what the swirly head is back again! and I feel that my chances of being well enough to manage a job are slim. I did apply for a job recently and was quite relieved not to get it as just thinking about 18- 20hrs a week started to bring on the old familiar dizzy head. Gloria, we do sound very similar, when we feel well we think we are on the mend, then wham it hits you hard again and knocks you off your feet and you feel so disapointed. Sandie it is good to hear from you again, you are like me a old hand at this thing, its 5yrs for me, but it still doesn't get any easier, there have been so many ups and downs. I just received my new ENT appointment, it's June - and thats supposed to be to get the results of my recent balance tests, I really don't think they take this condition seriously at all. Wendy in answer to your question, do all my children live at home,yes they do, although my daughter is at university and is on her placement year, so we are taking her back again tomorrow. To everyone else on here I hope you all have a lovely weekend. Sue xx |
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Hi Gill The earplugs I have are made from insta-putty (silicone). I can't remember what mine looked like when I first got them as I have had them a long time. Snorestore recommend 5 uses per set but I've used mine way more than that! You just kind of roll them into a ball and push them into your ear. They are really easy to use and stay put for as long as you want. They block out the 'loudness' but you can still hear perfectly well. Go back to www.snorestore.co.uk and type in the search box 'insta-putty earplugs'. The ones I have are just a single pair in the blue box at a price of 4.25. Well worth it and very comfortable. Read the reviews! I often use them at the cinema too as the adverts are usually so loud. Hello Sue, I agree with you, these consultants don't seem to take it all seriously do they? I'd love for them to live for just a week with what we have to suffer! That would make them sit up and take notice. I have experienced the same as you with this over the years - the rollercoaster of being fine for a little while and then 'wham' it's back again to haunt you. I've just passed the six year mark and I can say that this last year has been a bit easier for me. I am not rid of it by any means but I have been able to live my life a little more! It still does control me at times especially at 'that time of the month' so I get a couple of good weeks and then two bad weeks but at least I know it is going to pass. Do you still have a lot of problems with your balance? Take care Sandie x |
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This may sound crazy, but I've found something that actually works to draw the fluid out of your body and ears. EPSOM SALTS!!! It was quite by accident that I discovered this. I take epsom salt bathes often because it helps with my sore muscles after I run or work out. I've been retaining fluid in my ears for the past few days. I feel only a slight bit of swirlies. Nothing bad really. I have however felt pressure in my ears and a bit of a headache at the back of my head. I took an epsom salt bath yesterday and my ears popped and fluid came out of them. Nothing alarming and nothing hurt. It all felt normal. Actually it felt great. We went to dinner last night and it was very salty. When I woke of this morning I felt bloated a bit and had the same fluid feeling in my ears. Took the bath today and viola, pop and now my ears feel so much better. Epsom salts supposedly draw out impurities. Not sure how. Be sure to take a bath with two cups of the salts and sit in the bath for at least 20 minutes. Let me know if it helps anyone! Keep the faith!! Melissa |
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INTERESTING! My ears just so happen to be driving me nuts. One more plugged then the other and that feeling of fullness. I hate it as I feel when I blow one will plug so bad I will get really dizzy. My ears do that normally, but now it would make me feel freaked out. I had to stop the sinus rinse cause it has been hurting my ears and making them feel plugged. I'll have to get the salts. I think it would be heaven for fluid to run out of my ear. It happened 4 months ago and I loved it!! It's the little things now.. Thanks Melissa. Good day all!!! B |
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Hello everyone, 18 holes of golf this morning. Drove myself there solo! Sunburnt head. Trip to the bar (soft drinks only).5 hours after arriving at the course drove home. Result. BINX1965 |
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UPDATE, doing good i still have my days, with high pitch ringing when i go to bed and sometimes randomly through the day, and now my allergies are affecting me aswell uhh when will it END BUT its nothing to cry OVER unless its SPILT MILK :o today i went fishing it was veddy NICE :D now i'm just waiting for spring weather, and the bakinies YUMMY!!!! :D HOPE EVERYONE IS HAVING AS MUCH FUN AS THEY CAN LIVE LONG, AND STRONG!!!!! |
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Hello everyone, At 99% at the moment with the labs junk. Left over anxiety - almost cured myself in 1 week using Charles Linden's - Linden Method. This is superb and i would highly recommend to anyone suffering badly with anxiety during or post labs etc. Just type the Linden Method into google if you need to have a look - it's the best money i ever spent. In one week i went from 40% to 95% cured of my left over anxiety. Symptoms remaining: Same a Sean - some high pitched wistling tinnitus at times mostly at night. I can almost touch the light at the end of the tunnel. Stay safe everyone, BINX1965 |
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My first post on here... I'm on week 10 of my labs. Its same as it was on week one but without the vommiting or nausea (I found my sea legs very quickly lol!). I've been reading through the comments and one thing I've noticed, different to my symptoms, is that everyone seems to have suffered either some form of painful discomfort, or tinitus, or had evidence of fluid in the ear. I've had none of this at all, I just have the room spinning visually whenever I move my head! The doctors have ALL said the same thing, "ah it'll pass". For now I just try and get on with life best I can, I still drive (although probably shouldn't) but I have to work so there's no alternative. I have 2 kids with one on the way so there's no such thing as me "slowing down" and taking it easy as I just can't! Should I be pushing the doctors more for some form of test? And is 10 weeks with no recovery at all normal? I thought it lasted 3-8 weeks according to wikipedia? |
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Hi, Paul. I am at week 20 and there are folks on here with years under their belt. I don't think it is unusual for you. I have read in reality that it takes 6mo to 1 1/2yr for full recovery and sometims longer. If you feel like you need tests then you should have them to put your mind at ease. I'm sorry you are suffering and I hope you are fast to recover. I find the labs changes over time and can pick up new varied symptoms. It is slightly different for everyone. I had one great day were I woke up fine and didn't even think about a pill all day. That is the first time it was so easy. It was only one day so far, but it seems big to me. Daughter is still ill and it is thought to be ovaries. We hope she is better soon!! Hope everyone is great and on the up and up. Binx how wonderful you are doing so well. You too Sean!! Good thoughts!! B |
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Paul yeah man i thought it was going to be about 3 to 8 weeks aswell. But iv had it since october, i would say if your like me it will start to improve around the 4th month and be alot better on the 6th, if it so happens to sticks around. but i still have symptoms all the time like drowsiness, nausea about once every two weeks, and i just started having tinitus. the best thing to do is stay active, take allergy meds zyrtec, or off brand which is cheeper, GATORADE, and stay away from foods with high amounts of sodium, and perservatives. motion sickness pills to me are no good its best just to let your body fight it naturally IMO. i found that games like xbox, ps3 or whatever help with the dizziness for some reason probably because it take you mind off the crazy feeling, i never played games really untill i got this wierd sickness. HOPE THIS HELPS to everyone LIVE STRONG, act young, AND DIE OLD!!! |
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Hi all, Really pleased for you Binx and Sean that you have much much improved. That is how it should be - not this ongoing, dragging it's feet nonsense that I and a few others on here have! Well, went on Tuesday to the Royal Ear Nose and Throat hospital in London for my 6 monthly check up and the dreaded Rotational chair test (ENG). It wasn't the greatest thing I've experienced but it wasn't awful either - so for those that may end up having this - don't be scared. One that 'amused' me was - you are in this darkened room with one wall like a big cinema screen, you on the chair in the middle of the room. They put wall sized images of what I'm sure was the skyline view of New York from the Chrysler or Empire State building. The chair moves side to side and the image rolls across the wall at a different speed. You have to count as many tall buildings as you can!!!!! It wasn't April Fools Day, but I thought how the heck can you count the tall buildings of New York at such a pace!! I think it was the fact that they can detect your eye movements and how your brain reacts and NOT whether you guess the number of buildings or not!! Phew! Anyway, after this and a repeat of all the other tests they do, balance, hearing etc, I see the consultant's side-kick. Different person than before, so have to relate ALL the story over again. Why do you never get to see the same person, even better, how do you get to see the head honcho himself. So they tell me the results of the tests are pretty much the same as before - so no improvement. Clear indication that there is an imbalance between both sides of my ears. (Yes, know that). She tells me definately it appears migraine related ( yes, know that too - waiting until May to see the neuro). Also she tells me that my symptoms are a little typical of Menieres but are 'A-typical' whatever that means. So she gave me a low salt diet to follow! Packed me off with - we'll see you in another 6 months, keep doing VRT and hope that the neuro will give me something to address my migraines which may just help clear everything!! Oh - and Sandie, if you are looking in - said to take Stugeron if I have a bad day as now and again that wouldn't do any harm. Recognition at last for the Stugeron!!!!! For me, don't think it is Meniere's as she said I don't have hearing loss or bouts of room spinning vertigo which are more typical! As others on here have said, they have to try and find names to put to things they actually don't know the answer to. So not very encouraging. anyway, 6 minutes plus of spinning in that wretched chair have done my head and migraines no good since - felt a bit yuk the last couple of days, but carrying on regardless as we all do. Binx - get out there again and improve that handicap!! Paul - welcome - I would ask for a referral to a specialist ENT to get you on the ladder of diagnosis and the crucial VRT - controversial but it does help. Hopefully your encounter with our labs friend will be short and sweet. Love to all - hope things are either improving or at least on an even keel. Love and hugs, Gloria xx PS - Happy Mother's Day to all mums on here! |
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Hello Paul, The format of the beast is different for us all. Whilst there may be some 'typical' standard symptoms - the rest are a pick 'n' mix affair. Some people may get high blood pressure or bursts of high blood pressure as the brain (due to the faulty mixed up signals it's recieving) gives an instruction to the body to pump adrenaline because it thinks somethings wrong. This can manifest itself as anxiety, panic attack type symptoms or palpitations. I've had a go at the lot myself. Just hang in there ! Don't read to much into the timecales given on official medical pages regarding recovery. From what I have read on the various blogs - most people start to turn a corner at about 3 months - with any left over residual symptoms having faded at the 6 month mark. A few will go beyond this - usually when there is damage requiring a period of chronic compensation or where conditions such as migraine / silent migraine are active contributors to the symptoms. Mild forms of BPPV (where chrystals are floating loose in the inner ear) also tend to resolve over time as the chrystals disolve or move to an area where they don't cause a problem - you can also have something called the epley manouver to provide almost instant relief (in the vast majority of cases) from more pronounced BPPV. As my doc said 'ride it out' - although you may want to push for a referral if you need peace of mind - or it drags beyond 12 weeks. A word of cautiion though ! Most ENT specialists are useless when it comes to labs - all they will do is rule out any nasties. Then it's either back to your doc and some more 'riding out' or the next step a up the ladder to a neurologist or better still a nerotologist. Stick with the forum. If you have any questions ask away. There will usually be someone who has been where you are who can respond with info / advice. 14 weeks ago I knew nothing about this junk myself. Good luck - hope you turn the corner soon. BINX1965 (Nottingham UK) |
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Hi Gloria Yes, I am looking in - at last some recognition for Stugeron from a professional!! I swear by it now - it has given me my life back. Six years in and whilst I cope most days, social occassions still send me spinning or even a day shopping in town. Stugeron makes these occassions bearable and enjoyable for me. Of course, as I always stress, I wouldn't take it regularly. I wouldn't have put you in the 'Menieres' group either Gloria as that does involve deafness and other defined symptoms. A-typical means 'not conforming to the type' so guessing they don't know where to put you - lol! Ooh and Stugeron is actually prescribed for people with Menieres. I tend to say I have uncompensated Labs/VN as it's a lot easier! Anyway, my wonderful 21 year old bruiser of a son decided to lift up my bed when I was sitting on the edge yesterday and I really suffered from dizziness and nausea after that. What a numpty, people just don't think do they. I feel a lot better today, thank god! Take care Sandie xx |
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Hi All, Well it is day 3 of full, fluid, crackling ears. YES I have a swirly head and even had to reach for the anti-vert (meclizine) 2 nights ago. I think I have a slight cold, but haven't felt that dizzy in a long time! Oh the joys of labs and all it's residual crap! I can't believe that it has almost been TWO years since I got labs. Leaving for Disney World in 15 days. I sure hope the fluid in my ears is gone. Does anyone out there have any other tricks besides my epsom salt trick to get the fluid out? Melissa |
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I cant beleive so many suffer with this problem thank god for the internet!,i came home from the hairdressers two weeks ago feeling so tired i lay on the bed and fell asleep, on waking the next morning the sheer terror of the spinning room and the frightening feeling of no control sent me screaming into my family lounge like a woman possesed they sat shocked and tried to calm me down phoned the doctor and got me in straight away,i must admit i thought i was on my way out with a brain tumour and was so tired i couldnt help myself i dressed and was took to the docs i staggered down the corridor from side to side feeling sick and tired out and was told i have labyrinthitis given anti sickness pills and told six to eight weeks and i will be better just rest and it will go as fast as it came. i know now this is not so. ive had a chest infection and im so tired i cant function on a daily basis when does it stop? do you have to force yourself to do more or will it do more harm? help im going mad |
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Maria, hello to you and welcome. In answer to your question 'when does it stop' - well for me it's been a long time! But, luckily, most people do recover after six weeks. Hopefully you will be one of these lucky people! I must say that you are very lucky in finding this board after only two weeks, it took me months to find it and for all that time I thought I was on my last legs. We all go down the 'brain tumour' route and I thought I had one for a long time! It is an awful condition to suffer from and you will have many different symptoms. Try not to worry too much about it all, positive thinking helps a great deal and accept that this is going to take time to recover from. It will leave you when it is good and ready or it will stay with you but you will learn to cope with it. That is what has happened with me - it's flaming well stayed but hey, I still have a good life! One of the best things you can do at the moment Maria is to try and get out for a walk, escorted if necessary, as it makes you feel so much better about things and it really does help with the recompensation of your brain. Don't overdo it though because wearing yourself out at this stage doesn't help at all. Don't beat yourself up - people won't understand what is happening to you and that's their problem. What pills have you been given? Maria, please do not hesitate to ask any questions you may have. Someone on here will always help you. This can be a very lonely condition to have but coming on here will help you a great deal. Take care for now Sandie x |
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Hello everyone in Labs land, haven't posted for a while due to horrid throat infection and feeling very down with the old Labs, am on week 16 now and am slowly improving but ohhh sooo slow!!! Gloria......goodness me just reading your account of the spinning chair made me break out in a sweat and feel distinctly dizzy, how did you manage to not throw up?? What a hideous ordeal that must have been just to be told what you already knew!! Paul H..... welcome to the site, believe us all when we say '10 weeks with no recovery is normal' don't worry on that score, you will find the info on this site much more accurate and useful than anything on offer from wikipedia, medical feedback tends to follow a fairly rigid format of symptoms and recovery timescale of which the majority of real sufferers would dispute. There are such a huge variety of symptoms experienced by the guys posting on here, many who have suffered a very long time with this awful illness and you will find a wealth of info, advice and support from them. Your attitude of trying to get on with life as best you can throughout this illness is a strategy that will aid your recovery as remaining active will encourage the brain to compensate, resting is good but too much laying around can slow recovery, however if you feel totally awful then sometimes you have no option but to rest up. Above all try not to despair,this can be an incredibly frightening illness but you will gradually notice improvements and you will recover. Be careful with the driving, my Doc told me that should I be involved in an accident my insurance would not cover me as I had been diagnosed with Labs and therefore I was not safe to drive- might be worth checking with your GP on that one. Keep us posted on your progress. Maria..... Oh you poor thing, everyone on this site can relate to what you're feeling, you sound very frightened, this is such a horrid and scarey illness to experience and you sound very typical to how alot of us started with Labs, the way this thing just hits you from out of the blue, no warning, just bang and your spinning. The exhaution you are feeling is also very common with this illness, particularly if your Labs has been caused by a virus but also after a spinning attack you will feel exhausted and will need to rest. I imagine your Doc didn't give you a great deal of info either,I'm not sure they really understand this illness in any detail, the impact it has on people and how terrifying it can be. Interesting that you have a chest infection, my Doc said Labs often accurs following respiritory tract infection, I hadn't had a chest infection but had had viral conjunctivitus - so maybe your poorly chest is linked to the Labs. In answer to your question of whether you should push on and do more, perhaps if you are suffering with a virus you ought to get plenty of rest rather than push yourself, so try and be careful. You are most definitely not going mad. There are loads of really supportive and knowledgeble people who post on this site and you will get lots of help and advice so try not to despair and keep posting. If you have any questions or get abit worried about your symptoms just check in here and there's bound to be someone who can help. Also don't panic if you aren't following the timeline described by your Doc for a recovery in 6 to 8 weeks, that is the exact reason everyone joined this site- because non of us on here followed the expected patterns for symptoms or recovery timelines. I hope your Doc reassured you that you don't have a brain tumour or anything particularly dangerous, just Labs, but if you are really needing reassurance or are unhappy with your diagnosis then push your Doc to refer you to a specialist so that you can put your mind at rest, worrying needlessly is not a good thing to be doing on top of coping with Labs. You are not on your own, believe me everyone on here knows what you are going through and recovery can be slow and frustating, it is impossible to function on a daily basis when the illness is in it's early stages and doing it's worst but eventually you will start to see an improvement, you are not going mad, you are poorly and you need time to get better from this very debilitating and horrid illness. Look after yourself and keep posting, don't despair!! B..... so worrying about your daughter still being poorly, you and she must be at your wits end with it all, let's hope the speculation about an ovary issue isn't a wild goose chase and they get her sorted very soon, it seems to have gone on such a long time. To All....... Keep your spinning chins up and your wobbly feet on solid ground everyone out there, best wishes to you all. Sharon. xx |
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Sandie, BRAVO!!! Clap, clap clap! You said it exactly like it is! Perfect description and very reassuring!! Thank you, Melissa |
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Hi Melissa, Thanks for all your info on the epsom salts. If you want to try something else, I have been known to use castor oil. I rub it around my ear, particularly from where my hairline meets the tops of my ears, down to where my earlobes meet my jawline (the lady at the health store said I could actually put it inside my ears. Um, no thank you!). But I do find it sort of soothing...and it is supposed to increase circulation and fluidity. I use it when my ears feel blocked. Hope it helps a bit! Lucy xo |
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I had all the symptoms of labs. Went to the first ENT twice and was told to just hang on, it would go away. Asked my primary care physician if I could see a different ENT. Went to see him and he felt I had had a bad case of vertigo but that something else was going on. He sent me to a neurologist. We had a nice long talk and bingo, he diagnosed anxiety and depression both of which can mimic labs in their symptoms. I started on Lexapro and am completely well. I'm not saying that's what everybody has but it might be another route to try. After a year and a half I'm back to normal. |
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Thanks Melissa - kind of used to it all now ;-) Sandie xx |
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I also had all of the symptoms of labs. I also went to a Neurologist who told me it was anxiety and depression and told me to go on Prozac. For me, it was really undiagnosed lyme disease. I'm better today after treatment for 11 months (and counting.) My labs is gone! |
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Hi everyone havent posted for a while & so many posts on here I dont think I can catch up on them all without feeling dizzy!!! Melissa I cant believe you are having symptoms again! :( You were our inspiration I am sure its just a very small blip and just another horrid little reminder from the world of Labs. Wow Disneyworld, love it, hope you can feel better so you can enjoy the rides etc. Will you be flying too? Im gonna try your tip about epsom salts its supposed to be good for fluid retention & weight loss too!! Hope your running is still going well I am now running every day (3 miles) Im sure it has helped my recovery a little & will continue to do it. Gloria, havent caught up on your posts but hope you are okay. Have just had a lovely weekend at Center parcs off to Ragdale Hall (health spa) with a friend soon I know I will feel better than I did when I went last year (4 months in to this dizzy hell) Well my update is up & down but feeling a little better than usual at the moment although started sneezing earlier & a little off/dizzy but not too bad so on the whole an improvement on previous posts. Everyone else hope your okay :)x Only about 7 weeks til my holiday to Portugal (flying!!!!!) Anyway love to all Claire x |
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Hi guys, it has been a while since I wrote in, I was taking topomax for the Migraine Associated Vertigo and it was working. As the meds settled in I had to up the amounts and they started losing its effects. I started realizing with massive amounts of research. It occurred to me that the migraines/headaches never went away, I tried all the food triggers you name it and nothing worked. I would cut everything out except for my vitamins and supplements that I took every morning without fail. This seemed to be my problem since I eat a very well rounded diet of fruits veggies, lean meats and I exercise 5-6 days a week. I noticed I felt better after a workout. I kept telling myself as well as my wife that I take too many vitamins and supplements, so I woke up on a friday morning and didn't take anything just a good breakfast. Well I did not get a migraine/headache that day and 1 since then and its been almost 2 months. The unsteadiness, confusion, the wet blanket, drunk or hungover feeling went away. I did research on this I found out that VITAMIN A if taken in large amounts gets stored in the liver and since it is a fat soluble vitamin is not easily flushed from the body, it gets stored up. I won't get into the details but I was getting enough just eating veggies, then with Vit/supp it was too much. The detox was a little rough since everything was backed up. At times it was the same exact feeling that we all go through, but it got less frequent and the intensity was nothing. This lasted about a week and I was also weening off the topomax that was some of the krap hungover/drunk feeling as well. It's been almost 2 months and every day gets better. I hope this helps. Mike |
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Hi guys, it has been a while since I wrote in, I was taking topomax for the Migraine Associated Vertigo and it was working. As the meds settled in I had to up the amounts and they started losing its effects. I started realizing with massive amounts of research. It occurred to me that the migraines/headaches never went away, I tried all the food triggers you name it and nothing worked. I would cut everything out except for my vitamins and supplements that I took every morning without fail. This seemed to be my problem since I eat a very well rounded diet of fruits veggies, lean meats and I exercise 5-6 days a week. I noticed I felt better after a workout. I kept telling myself as well as my wife that I take too many vitamins and supplements, so I woke up on a friday morning and didn't take anything just a good breakfast. Well I did not get a migraine/headache that day and 1 since then and its been almost 2 months. The unsteadiness, confusion, the wet blanket, drunk or hungover feeling went away. I did research on this I found out that VITAMIN A if taken in large amounts gets stored in the liver and since it is a fat soluble vitamin is not easily flushed from the body, it gets stored up. I won't get into the details but I was getting enough just eating veggies, then with Vit/supp it was too much. The detox was a little rough since everything was backed up. At times it was the same exact feeling that we all go through, but it got less frequent and the intensity was nothing. This lasted about a week and I was also weening off the topomax that was some of the krap hungover/drunk feeling as well. It's been almost 2 months and every day gets better. I hope this helps. Mike |
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Hi all, Melissa - hope you really are having a very very short blip. I almost fear a really long period of wellness - only because I will get so down when the old 'snake' comes along. Bet you can't wait til your vacation - sounds amazing. Let us know how you get on with flying again. Will you do as you did before and take some antivert and plug your ears? Am still scared about trying to fly. Next year we may do a short trip somewhere. Hopefully, I will be in year 3 and will feel a bit more adventurous!!! Hugs to you xoxox Sandie thank you for your explanation of 'A-typical'. 'Not conforming to type - sounds just like me LOL!!!!!!! Claire - just take it easy now! Seven weeks until your hols - you don't want to rock the boat - literally!!!! What do you plan to do to make flying more comfortable or are you just going to go with the flow and see how you are? Mike - I'm intrigued about your experience of Topamax. I tried one pill and that was enough for me. The tingling in my hands and feet and odd feeling in my head was enough. Maybe you are coming out of your labs/MAV thing anyway. Hope you continue to be well. Well, had another busy week-end last week-end with Mother's Day and all. Had all the family over to us here - Hotel Gloria seems to be open for business again!! Next visitors are due in 3 weeks and then the following week I'm hosting some friends' relatives for a family wedding. They are over from South Africa. Have had some odd dizzy spells this last week - different from before. I can be normally talking and then very suddenly it is as if the room tilts from side to side then is gone. Not had that before. Nothing surprises me with this thing though. Seems as if the symptoms change all the time. I think you said Sandie, that you experienced different types of dizziness through your past years with this? Could all still be a backlash from that spinning chair thing though! Weather really warm and sunny here - at last. That's making me feel better at least. Love to all and hope improvements are imminent and ongoing! Gloria xx |
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Hello everyone, Good to see some general 'ups' going on. Myself: Still holding at 99% Some minor tinnitus coming in and out - plus some minor positional stuff. Anxirty issues all but overcome. Stay Safe, BINX1965 |
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Hello everyone, I've been trying to catch up with all the posts of late and there seems to be lots of new people on here, hello to you all and hope your stay is short! I'm still suffering with BPPV and trying desparately to get get an "Epley" performed, unfortunately there is only one doctor here that can perform it and he's away on holiday, so it will be three weeks of waiting in total, also apparently it takes a double appointment,I'm afraid it's another case of vertigo not being taken seriously. I'm contemplating writing a letter to the manager of our surgery to complain. Gloria, like you my symptoms have changed over the time and I too have had odd dizzy attacks whilst in conversation, it almost sounds silly to say talking makes you feel dizzy but thats exactly how it feels. Claire I hope your holiday goes well and good luck with the flying. Sandie you are very wise on all things "dizzy" and you are right walking is really good for you. I walk every day with my dog, although some days are a real big effort! Best wishes to everyone Love Sue xx |
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Hi, everyone! I have been running around the Pacific Northwest for the last week!! I drove to a rally at the capital of Montana for union and public worker s rally and then home and spent the weekend with my folks. Then, bright and early Sunday, we got up and went to Seattle to help my sister move. We just got back last night. It was a lot of going. I did mostly good. Had to take extra pills after the long car rides and the day after, but went pretty good. I was tired a lot and my muscles are super sore, but that goes hand and hand with moving!!! I'm sure the labs plays its ugly parts. Last night was very unpleasant, but this morning I am ok. I'm glad to know I have some abilities. I still have to work this weekend so we will see!!! I want to get past this to get back to work full time!! My daughter is somewhat better and was a trooper out there this week! I hope everyone is doing great and that someone is healed!!! Have a gret weekend!! B |
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Hi all, Well I waited 10 days and the fullness was still in my ears. Little bouts of swirly head, nothing outrageous. So today I went to my GP and she said that my right ear (labs ear) had ruptured blood vessels (huh?) and my left ear was full of fluid. Makes sense since my left ear feels full of fluid and my right ear hurts. I had to literally beg her for an antibiotic. This has happened twice before since I had labs two years ago. The antibiotic always clears the fluid out. Claire, thank you so much for calling me an inspiration. This is just a small blip on the radar for me. If I get a cold, it goes right to my ears. Actually, as I said above, I really am not terrible with the dizzies. Thank God!!! Yes I run twice a week. Usually 6.5 miles and every other weekend 12 miles. I also take a boot camp 2 days a week and body sculpt 1 day a week. It too helped heal me faster. Keep on running Claire, it will do nothing but good for you! Gloria, yes I will take the antivert and plug up my ears with swimmers wax. Works like a charm! How are you? Jo, I too was prescribed Lexapro. I decided to take Zoloft instead. It absolutely, 100% helped me get thru my labs quicker and easier than when I wasn't on it. I recommend it to everyone on here, but most are against that sort of medication. All it does is helps your brain release more serotonin to help decrease anxiety. I have NO side affects and I won't go off anytime soon. An increase of serotonin also helps heal your vestibular nerve faster. Binx, you are coming along beautifully in your recovery. Keep fighting! Keep the faith everyone!! Melissa |
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Hi Gloria, in answer to your question - yes, I have experienced many different types of dizziness, from spinning vertigo to mild dizziness to just weird feelings in my head. Have had a sensation today which I've had a few times over the last few years - it's like that popping candy stuff you put on your tongue and it feels really weird only it's at the back of my head - strange! Also have had dizzies which lasts for hours and hours and more fleeting dizzies that last a couple of seconds. So many different symptoms with this condition. I can even get dizziness when I blow my nose, obviously the pressure on my ears sends everything haywire and if I'm not feeling great I can get dizzy just by coughing or laughing! That's not nice. Yes, the weather is beautiful up in the north east too but I have a bit of a chesty thing going on and my eyes are stinging real bad, roll on hayfever! Sue, I also have been dizzy many times just talking to people so don't worry about that one too much! The 'loudness' of people's voices used to really get my symptoms going in the early days and I can still be very noise sensitive.Keep walking with your dog, it really is one of the best things you can do even if it is just to keep yourself from going mad! |
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Well hi all. Just got back from my 2 day break in Herefordshire. It was lovely and picked a really good weekend weather wise. With regard to my symptoms, I was pleasantly surprised with how I did. A bit of swirlyness at times and some fatigue but did have bursts of time where I kind of forgot my symptoms and they kept at bay a lot of the time. Now I am back and my neck is aching after the car journey. Just had a rest after unpacking. So, whilst not symptom free, definitely feel there has been improvement over the 2 years!!! (it is my VN 2 year anniversary next Friday!) The weather is so nice at the moment and definitely encourages you to go outside and do a bit more activity which we all know does help this condition. Melissa so sorry you have got more ear problems and I am hoping they resolve quickly for you. I am sure there will be no relapses as far as the labs are concerned as I think you are over that, at least I have my fingers crossed you are!! Someone asked me earlier about blood tests and thyroid function. I did have all those things checked, two or three times, over the last two years but all are completely normal or so I am told. Cholesterol a tiny bit high but that is all the chocolate I eat!! Well just thought I would post to say how I got on and I hope anyone else planning a trip away soon has a lovely time. Hope everyone who is still working or trying to work through this is coping ok...I know how hard that is. Take care all Love Jemma xxx |
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Hi all, Jemma - fantastic news - your first few days away after getting labs and it sounds as if you had a good time. Didn't you do well with the weather. Cannot believe it is so warm in this country for this time of year! Not to last though - still hopefully it should return soon as we are heading for summer LOL!!!!!! Your neck is probably sore Jemma because your muscles have been working overtime to stabilise your head/balance. Even though we think we are OK, we just cannot know what signals the brain is receiving all the time for our muscles to react as they do. Anyway, make sure you book another break before not too long if you can. So pleased for you Jemma. Will think of you on your 'anniversary' next Friday!! Sue - have you had BPPV all along or have your symptoms changed into BPPV? You were doing quite well a few weeks back. Do you think the Verapamil has done anything at all? Although you live in a lovely part of the world, I can imagine there isn't a huge choice of specialist people who deal with vestibular function in your neck of the woods. Have you had any contact with a Vestibular Physio throughout all this - because they can do Epley's usually. What is your local hospital and do they have an ENT specialist department? It's terrible that you have to wait that long to get to see someone. You do sound a bit down and I can understand why. The challenges this monster gives us and we all seem to deal with them. God knows how sometimes. Keep strong Sue - sending hugs and hope you will be up a very long 'ladder' soon - xoxo. Melissa - thank you for asking after me. I'm 'progressing'. When I think of how I was a year ago I've definately improved. Because we get all these odd changing and reoccurring symptoms - it is easy to think we are not getting better but just stagnating! I'm doing pretty much all my usual stuff - although the socialising side of my life is a bit quieter than I'm used to - that said here I am with a house full in a couple of weeks again!! I've started doing some voluntary work a couple of days a week - receptionist at my friend's hairdressers which is very local. Simple enough job, but has been a challenge for me. My brain feels exhausted when I get back home and makes me feel more swirly, but I'm trying to persevere and train my brain back to full capacity again. Don't know if it will work. Sorry to hear your ears are causing you bother - mine have too. Feeling full and some ear pain. When I saw my ENT consultant last week, she is also referring me to a Rhinologist! She thinks my Eustachian tube isn't working properly which is why my ears feel full and have had a drippy nose and nose bleeds too. Couldn't be bothered to say that all this has only come on when all this labs started. They never seem to understand that some of these things just may be connected to labs and how the brain and nerves function all in the same area. For me it is all on my left side which is my affected side. They are also doing a MRI scan of that ear again. MORE flipping tests. All that aside, - as you do- have got used to all this now, but would love to feel normal some day! Have a great time on your vacation Melissa - take it easy xoxox B - my goodness you have been SO busy. You do sound more up beat and appear to be on a good run at the moment. Let's hope it lasts and you continue to feel good (with minor blips - but I think we all accept those by now!) Glad to hear your daughter is feeling better too. That must be a load off your mind. Careful you don't overdo it though and get a bad relapse. Know what you mean though when you need to test your abilities. I've hated not being able to charge around and not think twice about what I've been doing. Maybe the odd bit of tiredness in the evening, but not feeling totally shattered and ache all over because we've tested every muscle in our body too! This wretched thing will have to learn that I'm in control of it and not the other way around LOL!!!! Sandie - I've got some of those combinations to look forward to LOL!!!! A lot of odd symptoms appear to be in the back area of my head too. Probably due to the faulty nerve that has been affected - or our faulty 'wiring'!!! I'm off to Kylie Minogue's concert at the O2 tomorrow. Ear wax and Stugeron at the ready!!! Binx - you are just about out of it now and thank goodness for a success story. Just keep it that way! Are you going back to work soon? If you are - just be careful and take it easy - no slippery snakes required! Apart from my 'odd' not normal feeling head - I'm doing OK (famous last words)! I expect blips/relapses - so it will be pleasant not to have one and be entirely rid for good. Any fairy god-mother listening in with a magic wand?!!!!!! Lovely to hear from everyone. All keep progressing in the right direction. Love and hugs, Gloria xxx |
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I must report that after all of the busy-ness of the last week and work this weekend, I am pooped. I have zero energy at all. I don't feel too bad, sorta swirly off and on, but have been struggling with full ears for a couple weeks now. Took double allergy pills the last couple days and it seems to help a bit. We are going to Billings this weekend for my daughters birthday and it is about 363 miles. Sorry, I don't know kilometers. It's about 4.5 hours. I find the long drive to be taxing at least the 7 hour drive to Seattle was. We'll see. I'll be taking it easy this week until we go. Gloria, you sound better. I hope the headaches are not causing you pain as much. How is the house sale going? How is your new job. Jemma, you sound good!! I'm so happy your trip was a success. Hope you stay well. Your chocolate statement made me laugh! Good for you. Binx, I hope you are completing this journey for good! Melissa, have the antibiotics been helpful? Sorry you have had such trouble lately. I'm terrified of getting sick. Hope you are better. I wish everyone I've missed the best. I'm tired. Best of days to everyone. B |
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Hi all, Melissa hope you get all that 'ear stuff' sorted before your fab holiday! I will be trying your ear tips for flying soon actually my vrt therapist also told me to use 'ear planes' which are like waxy ear plugs so I will buy them is the anti vert you take like an over the counter travel sick med? (stugeron) in the UK. Have an amazing time & try out some rides & let us know how they go, I always loved the rides before 'this' all started. Gloria, more tests!?! maybe they will find a simple but miracle cure for you (fingers firmly crossed) Enjoy Kylie she is going to put on a good show!! I am also much more sensitive to noise these days so a concert is a real test for us! Jemma, Well done on your weekend away sometimes one i enough to restore your confidence & realise that you can work around the 'dizzies' & not let them rule you! The weather has been so lovely its got to be good for us all. I have a rotten cold now full on sneezing blocked up etc. Good news is the dizzy stuff is no worse than I would expect it to be with a normal cold. So thats a bonus!! My big girlie is in Barcelona on a school trip so thinking about her takes my mind off everything else. Sue,B,Binx,Sandie,Shirley,Wendy and everyone else who's checking in hope you are seeing lots of ups & less downs. easter hols for us now so lots of stuff with the girls and little time for rest so I'll keep on going & hope it will be good for me!! claire x |
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Dear all,I am doing quite well, I am enjoying the lovely weather even had a trip to St Michaels Mount today - I didn't go by boat we were lucky the tide was out, so we were able to walk over and back. Gloria in answer to you, yes I've had BPPV ever since this started, but it does go and at the moment it is only really troubling me when I tilt my head to the right(my affected ear)or when I get into or out of bed and overall I don't feel too bad unless I over do things or get too stressed.We are lucky to live in Cornwall but the facilities are a bit limited and no I've never seen any vestibular physios- I wonder if they exsist here? I will ask in June when I see the ENT again. I do get fed up with the many symptoms but rarely give into it totally. I think people get fed up with hearing about it. Someone even said to my daughter the other day that her mum was a bit dizzy (she had it for a few days) but she was dealing with it! the temptation to ring her up and say yes and so am I but it's 5 years of dealing with it not just a few days! that does upset me, but hey I am dealing with it and very well - most of the time. The verapamil does help with the migraine/ vertigo but I have noticed that I'm tending to get more actual migraines lately, I think it's my age or so the docs will tell you, everything else is, after all! I'm hoping the rest of the Easter break is so good weather wise,although I havn't got alot planned, there's always the garden and dog walking to do, both of which I love now that my children are quite independant.Well most of the time! Love to you all keep positive Sue xx |
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Claire, the Anti Vert aka Meclizine aka Dramamine, Bonine all the same drug. AntiVert is a prescription it stops motion sickness and vertigo. So I make sure to take it before I fly. Dramamine, Bonine both can be bought over the counter here in the US. The US doesn't have Stergeron. B, YES the antibiotic has worked! I knew it would and that is why I pushed for it. I feel 100% better. Gloria, you are living a normal happy life now. I believe you are healed from the labs and now have to live with whats left. Same here . I just live with these blips. Miss you all! Keep the Faith Melissa |
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Gloria, all of my allergies, post nasal drip and perennial rhinitis have started since I got labs too. I didn't have any of this before. Indeed, for me, I think it is what keeps the Labs/VN going on and on.I am totally convinced that if i could get rid of all these allergies I would be rid of Labs also. My eyes have been terrible these last couple of weeks and my throat sore and prickly. Never had that before Labs. I also have the odd nose bleed too but think it's because of the nasal spray I use. What fun! Hope you have a wonderful time tonight at the concert! Jemma, so glad you had a good break, well done! As Claire says you will get more and more confident if you can work around your dizzies. You were very lucky with the weather too. I'm off to Scotland for a week over Easter, expecting snow lol! B - lack of energy is part and parcel of this condition, your brain is working so hard to cope with everything it simply gets worn out! You are doing really well. Claire, it's good that your cold hasn't caused a relapse for you. Why does everybody get a cold at this time of year? The sun comes out and we all start coughing and sneezing! Sue - it's so frustrating isn't it when people just DO NOT realise what you actually are dealing with. There are many times I have wished that I could welcome them into my world for a few weeks and see how they cope with it all. I had one particular friend who put my condition down to panic attacks - that was very annoying as I have never ever had a panic attack. Thing is even though you explain it to them it falls on deaf ears. I have lost quite a few friends over the last few years but then you have to ask yourself the question as to whether they were real friends anyway. Who cares, stuff them and let them live in their own little ignorant world. And, you can put all the GPs in that little ignorant world too because they are just as bad! Melissa, so pleased your antibiotics have worked for you! Take care everyone Sandie xx |
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Hi all, Kylie concert was amazing. She is so professional and the staging was incredible. Her new album and tour of the same name is Aphrodite - so the set was as if set in the Parthenon in Athens Greece - Grecian gods and goddesses abound glittering with their Dolce and Gabbana outfits. There were fountains just like at Las Vegas (can't remember the hotel name where they have the 'dancing' fountains) - a swimming pool on stage and flying 'winged' horses around the arena. The London O2 arena is a good venue, but the volume of sound on the support act was awful. Kylie's sound system though was much better and although loud, not so intrusive on the ears. I did use those wax ear plugs which were amazing because you just mould them to your ear shape and press to get as much sound reduction as you want. Well suggested Sandie! Our seats though were up in the 'gods' and SO steep I didn't know if I was going to handle sitting there because it was so sheer in front of me. I gripped for dear life onto my hubby. It was OK when the lights went out and I just focused on the stage. So I feel quite good that I have managed to get to a large noisy concert and not feel too bad. Before we went into the arena I did feel quite swirly and thought, typical just my luck but I think it was anxiety of what to expect. Totally exhausted though yesterday and today with a slight headache (no wonder)! Didn't think a year ago that I would be doing this - so a good measure of progression! B - enjoy your trip to Billings and have fun. With regards to the house selling - zero, zilch, nada! We've reduced our price down by £30,000 (about $55,000). This is our rock bottom price - if no interest now then we take it off the market. Nothing is selling outside London. People are just so unsettled about our economy and can't get mortgages anyway. So it's stalemate. What will be will be! Love and hugs to everyone. Gloria xxx |
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Gloria, Interesting to know it's the economy in other coutries too! I'm sorry no interest, but maybe it is meant to be another time. Best of luck either way. Moving is SO HARD!! Good Health to all!!! B |
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Hey Gloria, well done to you! Glad you enjoyed the concert. A few weeks back at the Enrique concert I too was on the raised seating area. I mean flaming heck, you don't get much space do you even for people who don't have problems like us! I'm assuming you stayed seated for the duration? I had to stand throughout as everyone stood up straight away! But at least I managed it and enjoyed it. My son stood behind me just in case! I know what you mean about support groups, the sound quality is usually not good and they don't get much 'stage space'. Last year when I saw Green Day they had Joan Jet and the Blackhearts and Frank Turner and they were actually first class, so real value for money there. Regarding your house sale, it's a nightmare time isn't it. I have noticed a lot of 'to let' signs up here in the north east and not many 'sold' signs. Ooh, just remembered, my sister took my seven year old niece to see JLS at the 02 and they were way up high too, and my niece was terrified and burst into tears, so you have done really well there! Take care Sandie x |
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Gloria, Not that it is any of my business, but did you mean $55,000.00 US dollars? Because I have never even seen a house sell for such a low amount here int he USA! I may need to move to England ASAP!!!! LOL Down by $55,000, not down to $55,000 — Rich |
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Haha melissa, you are funny. Might get a luxury dog kennel for that in the UK!! |
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HAHA If Gloria's house was only $55,000 then we'd all be putting in our offers :) Not long til your vacation now Melissa! Hope your ears have settled down now. I am now 1 week in to a full on cold yuk!! has sent my head haywire very woozy/shaky/spacey today but at least i know why & know it will go as soon as my cold goes (it had better anyway) Only 2 more sleeps til my eldest returns form her week in Barcelona cant wait to see her!! Hello everyone, hope your all okay Claire xx |
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Hi everyone, I got a bad episode of fuzzyness and nausea one morning about a month and a half ago that lasted for about 3 hours, and every since I've had bad off-balancedness. The doctor did lots of tests (agiltity, reflex, balance etc) and said I was ok, but referred me for blood tests. The thing is I was getting much better, but probably overdoing it, (I like walking and keep fit by this) when I got very wet over a weekend and another day in the rain and got a sore throat, and cold. The offbalanced feeling came back with a vengeance and Im now sitting in bed, reading your posts because I just know I have to rest and recuperate. Im taking Serc, which worked well at first, but now Im dont think it's working very well. I've started taking echinacea, and eating porridge every day to get some strength back. I now feel Im going into panic mode with feelings of vertigo, especially out on the street and the usual-in shopping centres, terrified I'll fall and people are watching! Am also very sensitive to noise of cars and the sight of railings (!) I also have trouble turning my head. I have a stiff neck at times and suffer from migraine. The doctor said in passing I have labybrinthitis, but not much good at sorting it out. I've ordered some Vertigo Heal (a herbal rememdy fro Jan De Vries) so hope that sorts it out. It's very frightening, although I dont have spinning or get sick. The ironic thing is that I think I got the 'labs' from a very congested head cold, sore throat originally and cut back on loads of activities (including leaving a college course) to lessen my stress and then, it got worse! |
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Hi Mary, just noticed your post :( poor you it all sounds so familiar to many of us on here definitely sounds like a case of Labrythitis which usually starts off with a virus (mine did) or very bad cold/flu. Sounds like you are doing all the right things keep your strength up KEEP ACTIVE & try any herbal remedy you can I have had this for.......a while!! But I have seen improvement lately I have avoided most meds for most of the time & also take herbals & lots of exercise!! Have heard of vertigo heal some people on here have mentioned it before good luck with everything & try not to panic (easier said than done) Shopping for me at the start was awful always felt like i was going to drop to the floor, never actually did I have been having VRT (google it) its just exercices to help retrain the brain to compensate for the damage caused by the virus to your balance system. You've found the right place for answers most people on here could rewrite the medical journals info about Labrynthitis!! Take care Claire xx |
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Hello everyone, Still dropping in and reading all of your posts. Glad to see most are still having fun - despite some ongoing issues. I'm still holding at 95 - 99% or there abouts. Still some minor tinittus and bits of residual anxiety hanging on - but nothing too nasty. I can even tolerate the dreaded fluo lights and supermarkets now !!! 12 weeks ago I felt I was dying for sure ! Being ill with the beast has changed me. I have now applied to take voluntary redundancy at work and will be looking for a new path to tread. I have done 30 years hard slog and long hours and only just realised I need to pull back from the edge - it's just not worth it anymore. Before Labs I had only taken 18 days off work sick in 30 years - ten days of that was with the dreaded swine flu. If my redundancy request is accepted I intend to hunt for a quirky 'odd ball' type job to keep me occupied. I fancy something wierd - but insignificant !! Best wishes to you all. BINX1965 X |
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Hi Mary This is definitely Labs you are suffering from. Everything you mention I have suffered from at some point and the very fact that you feel worse since you caught another virus is typical of Labs.I note that you mention railings making you feel worse. I always found these really hard to cope with in the past and sometimes still do but I find if I turn my head and look the other way it is much better. Same with walking through trees in the countryside and the sunlight coming through - that used to double my symptoms! Mary, I've had this for six years and it is absolutely terrifying at first but I can assure you that whilst I have had terrible off balance feelings over the years (I once grabbed a gentleman in a shop much to his amusement), I have NEVER fallen over. I think the key to this is not being too afraid of what is happening. The more confident you are, the quicker you will either recover or get used to it! Eat well, walk loads (with an escort if necessary), and rest lots. Don't be hard on yourself and ignore other people and what they may say to you because you will look normal to them and they just don't understand. Serc doesn't work for most people but do try and keep away from any other medications as they actually numb the brain and don't really help with recompensation.Your brain needs to experience all these dodgy signals it is getting from your inner ear in order that it can readapt itself and learn to ignore them. Anxiety is also typical of Labs. Like Claire, mine started off with a virus. Ask any questions on here if you have any! Take care Sandie x |
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Hi Claire and Sandi, Thanks for your replies. I had to go to the emergency doctor today, because along with labs, I had a cold all week (as I wrote) and I had a feeling it was a kidney infection. I never felt so sick in my life, especially just no energy and hardly able to walk properly, feeling very weak. Anyway, I was given anti-biotics and the dr said it was typical that the vertigo get worse with an infection. I was ok out and felt stronger, tho had to be driven there and to chemists and back. As I seem to have a mild version of labs, hopefully with the anti-biotics and serc, also prescribed a decongestant, it will clear up. My mother actually suffers from Menieres Diesase, but I dont remember her being that bad. Incidentally I cant figure out which ear I have it in. I thought it was the left, but the right ear and neck was more painful last night, although generally my left side is weaker. I'm definitely not going to take any other chemical meds for it. Bought Anti-Stress Vitamin B, because it was starting to make me over-anxious. Again, thanks for your replies! |
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Dear Mary, poor you, the people on this site are great and offer lots of useful help and support, I too have suffered a lot of symptoms over my time with this and I think you have to learn to be patient and try not to over do things,(that is easier said than done). I hope you feel better soon. Binx - hope you are successful in your new job choice, maybe work on a cure for all us dizzies! Love to everyone else. Sue xx |
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howdy yall i'm still doing good with a bit of drowsiness and tinittus. but i feel awesome now that the warm weather has arrived. i just got a job for Yellowstone national park ill be starting on the 2nd of june!!! hopfully i dont feel sick when i get there lol anyways just dropping a line hope everyone is doing good best of luck to you all!!! |
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Hi Mary Your doc is right - this all gets worse with any kind of virus you pick up, not always but most times. As for which ear might have been affected, I don't think you can really tell. I read somewhere once that all this stuff could only be medically proven once you are dead and have had a biopsy! The problem being that the inner ear is so deep inside the head. I don't think we want to go that far! Mostly it is diagnosed by symptoms and tests at the hospital, but even the tests you have can be misleading. You can pass every test and still have Labs or VN. You say your mother has Menieres - remember when I said that people don't really understand this condition because you look OK? Maybe your mum suffers more than you realise! To many people I look absolutely normal - I go about my normal life and sometimes I can feel really bad, but I don't say anything to anyone - that's the way you get if you have it a long time, you kinda just get on with things! Good on you for keeping away from the meds, I know it's hard but they don't really help much in the long run.I do hope you feel better soon. Sean, glad you are feeling good and congrats on your new job. That's a great job to have if you suffer from this condition as you will be outdoors - I always feel better outside! Take care Sandie x |
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Hi,Everyone!! Just got back from our 3rd trip this month and I have survived!!!! It was all ok, but yesterday I had terrible anxiety. I can't tell if it is same ol from always or if it was labs related! I have a hard time telling things apart since labs like low blood sugar, reg anxiety, or anything. It all gets me worked up!!! Anyway, it was a good trip. My daughter turned 17 yesterday and we had a great weekend. She got a crusier bike and it is SOOOOO cool!! Mary, I'm so sorry you are in this place. You will recover!! Rest when your body tells you too and do as much when you can when you can!! I'll be sending you the good vibes. I send them to everyone as we deserve to recover and never ever look back. These folks are wonderful and I am so grateful to have found them all!!! It is nice to know I am not a crazy person!! GOod luck! Everyone, I hope spring is upon us all and now things will get easier with the decreased barametric pressure!! Glad Sean and Binx are almost 100%!! Sean, I have always wanted to do that for a summer!! Have so much fun and watch out for those hidden gysers!! Binx, you should become a labs counselor. There needs to be someone out there to get people through!!! Best to all! B=) |
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Binx, Good luck with the job hunt, must say that I too did not have a single sick day before Labs and had rarely visited my GP. Labs put an end to all that lol! Sandie |
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Hello Everyone, Came across this site while looking frantically for help for my 16 yr. old daughter. Her ENT said she might have Labyrinthitis and Vestibular Neuritis. He said there is no real test for it. It is his best guess. Put her on lmg valium twice a day for balance. Has a MRI scheduled for today. All the symtoms match what I've been reading here. Started with feeling dehydrated, then her eyes felt funny and had an attack of stomach virus. Eyes were checked-healthy. Started on March 12, the worst for her is the anxiety and feelings of depersonalization. Don't know who to trust, none of the Dr's seem to know anything or even agree. Is anyone on here in southern california? I've searched everywhere for some kind of group support and nothing. So scary going through this when you can't get concrete answers. She is also on zoloft for the anxiety. I didn't read through all the posts as there are so many, but if anyone knows of things that help, I would much appreciate hearing from you. Thanks, Kathy |
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Kathy, I'm so sorry for you and your daughter. You should have her read the above posts for herself so she can get some assurance. It is a horrible illness and only time will heal it. No Drs truely understand this and that is a shame. There are good endings and she has not been sick long so there is still lots of hope!! Most cases clear up in just a few months! We will all hope for her and her quick recovery!! B |
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I had a really bad attack of labyrinthitis back in December - room spinning, couldn't move head one inch without vomiting, went to the emergency room on a stretcher, couldn't move for a week, etc. I was just getting over a bad cold with a sinus infection when it hit. I still have residual symptoms every day (It's going on four months). I did a VNG test (similar to the ENG test) which included a caloric test where they blew hot and cold air into my ears, and the results showed a 70% weakness in my left ear. Or, as the doctor put it, "two-thirds of the vestibular function of your left ear is GONE." I asked, "Is that coming back?" He shook his head emphatically, "no!" He thought I have Meniere's, although the first time I saw him he thought I had labs (I myself think it's labs). I have researched extensively on this by now, and I'll share some of the knowledge I've gained. This forum has helped me a lot to feel I am not alone. I hope my experience helps someone out there too. This is what I've learned: labyrinthitis usually damages your inner ear permanently. That's because, once damaged, the inner ear has little ability to repair itself. But the brain compensates for the bad signals, learns to work around them and ignore them, and to get by with the new asymmetrical ear situation. For the brain to learn to do this, you MUST MOVE. The more you move your head and eyes in all the ways that make you sick, the more quickly the brain learns to compensate. I read an article that compared this compensation as a baby's first attempts to walk. It takes a baby some months or years to learn how to crawl, walk and balance, but it tries again and again until it masters it. Thats what vestibular patients must do. This new learning is stored in the upper parts of the brain that are reserved for learning new tasks. This new learning is much less stable than the lower part of your brain where your old balance and orientation were stored, and your brain can decompensate if you're not careful, just as you can forget a language you've just learned, whereas you're not likely to forget your native tongue (your old balance mechanism). But as with learning anything, the more work you put in, the faster you will learn and the more automatic it will be. The only remedy that I've read about that seems to work 100% of the time (after reading hundreds of posts on forums about this illness) is exercise, both vestibular and regular exercise. I saw an amazing video on YouTube where a girl with uncompensated labyrinthitis healed herself almost completely with VRT (she would feel vertigo as many of us do by being in shopping malls, looking at colorful patterns, hearing loud noises, seeing anything busy or stimulating). So I decided to try it. I first started doing some exercises I found on the web (the Cawthorne-Cookseys), but they didn't seem to work so well. Then I went to a therapist and she assigned me exercises that seemed much easier, but that were actually much harder because of their duration. A valuable thing she told me was that the brain takes at least a minute to start compensating. She told me to start with a minute and try to work up to two minutes. I went home and did the exercises, and after about a minute of each exercise I thought I was starting to go insane. I think it was the speed and the duration that made it so hard. It was as if I could actually FEEL by brain rewiring. It was so disturbing it brought on a flood of tears. In fact, that night I had a major anxiety attack. I became fearful that I would feel like this forever, and I didn't want to live. The next day, I decided I needed a major attitude change or I would never make it through this illness. (Anxiety actually interferes with compensation, as does stress, migraines, sedatives, and Meniere's. This is because all of those things change the signals your brain is getting, so it can't learn the new system. So it's VERY important to stay calm, although the anxiety sometimes feels involuntary, which no one understands)! So I changed my attitude, kept doing the exercises, and after about the third day they weren't so hard. After a week I had built up to two minutes and I felt less upset after doing them, and after two weeks they weren't so bad at all. Apparently they not only help fine-tune your brain, they also desensitize you to certain head movements. This was great, as almost right away head movements would feel less traumatic in real life activities. I had to do them 5 times a day (I built up to 12 minutes for each session, for a total of one hour), and I also had to walk out of doors at least 30 minutes a day. Walking used to be so hard, but since the exercises were so much worse, walking felt easy in comparison. And I think walking improves the circulation in my ear and increases my general sense of well being. Anyway, I did feel much better moving about than lying around, which I never would have thought, because moving around in general has felt so awful. I went back to the therapist, and she did some tests and noted an enormous improvement in my nystagmus, vision, and balance, and gave me some harder exercises to do. She was quite impressed with my improvement. "That's how it's supposed to work," she said. "A lot of people don't really practice because they don't take the time or they don't believe they'll work, or they stop because it makes them sick. But I can see you really practiced!" She also gave me a tip, which is to look at something with my eyes before turning my head. She said to always do this with head turns, to make it a habit. It definitely helps with the vertigo. I could really feel the improvement. I had been unable to see a movie in a theater before without having to leave because of extreme nausea, but after a week of VRT I sat through a whole movie and didn't get sick. The migraine-like headaches started to go away. I now wonder whether they were actually migraines, or just tension headaches from keeping my head and neck very tense and not moving my head normally. Moving my neck doing the exercises helped with this, and now I move my head more naturally in general. But the headaches really did feel like migraines. What's strange is that the doctor I went to insisted that headaches are not part of labyrinthitis, although everyone seems to complain about them! I'm now only in the third week of the VRT and I still have bad days, but not as bad as before, and there are more good moments. Now I force myself to walk and do the therapy no matter how awful I'm feeling. I've also noticed that I don't do as well with the therapy if I'm tired or distracted, which proves that it's an upper-brain thing (like forgetting the lines to a poem you've just memorized when you're tired). At these times, I can't keep the letter in focus, and I get more nauseous. But concentrating really hard seems to help. Besides the exercises and walking what's helped me is fresh ginger tea, hot herbal baths, massages, self-pampering, vitamins, lots of water, cutting down on sugar and salt, eating more fruits and vegetables, trying to work as much as I can, and a positive attitude! |
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MSK, Hello I have had labs for 8 months now came down with it when I was 18. From what I know thats helped me is she should drink gatorade, avoid high sodium foods, no caffeine or energy drinks, have a good sleep pattern, stay away from loud noises, go on walks helps compensate for the dizziness, be with friends that understand, have a strong healthy mind even though its hard to do when times get rough but it helps, know its going to get better, AND STAY OCCUPIDE WITH ANYTHING! when i was really sick and on meds which IMO made it worse in the long run since my body couldnt heal naturally on its owen. if she gets depressed have her go out in the sun and get some of that good ol vitimin D. This is pretty much every thing that i thought helped me so she could give it a try. hope all goes well. i know this can be rough at a young age with the social life but it gets better over time. HOPE ALL GOES WELL! to everyone enjoy the warm WEATHER, AND GREENESS OF SPRING!!! :D :D :D :D :D |
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Hi all, Just got back from a lovely weekend in the country (Devon) to celebrate my uncle's 91st birthday! He has a lovely little house on a hill that overlooks the sea. Magical. Strange though that I felt a little swirly headed because my environment had changed. Coped OK and din't need any meds, thank goodness. Welcome Mary and Kathy. I cannot believe your daughter of only 16 has this horrible thing. Both what you and Mary describe is exactly how many of us on here had ours start. Once you understand that it is labs, then it is a waiting game for it to fade away. Along the way symptoms fade but can then worsen again, gradually decreasing. So don't be alarmed if a blip comes on after a good patch - labs recovery is not linear. I would suggest that as your daughter is so young it will be a relatively short lasting thing for her - a few weeks to a couple of months or so, but she will get better. The key is to try and go about your/her normal day to day routine as much as possible. The best thing being for her to keep active and exercise. Although not a medical doctor, most of us on here would suggest she tries to drop the valium - it stops the brain from recompensating it's balance. Anxiety is a horrible involuntary side effect of this too - the brain's reaction to being confused about what is going on balance-wise. She is quite young to be on Zoloft, but as soon as she feels able to come off it - again suggestion would be to do so. The best thing for labs recovery is to take little medication as possible - although at the beginning stages when it is at its worst - we all needed something! Doctors and specialists don't seem to be aware of the multitude of side effects this can cause and it's only this site that has been my saviour to hear of others suffering similar things to me. No doctor ever told me that things like profuse sweating, muscle aches and pains, lots of headaches are all as a result of this. Again, many of us on here have done balance exercises called Vestibular Rehab therapy (VRT). These are given by a physiotherapist that specialises in Vestibular problems (inner ear) and if you can find a Neurophysio or Vestibular physio - then they should be able to give your daughter some head and balance exercises to do. Some say it helps cure - I'm one of the few long- term sufferers (that said I think mine has been VN and now at nearly 2 years feel like I'm on the right side to normality at last). VRT has helped at the blips but I think it has been a time issue to recovery rather than that alone. The MRI scan is a good thing to have done as it eliminates any other things going on in the brain - and like most of us on here will be clear I'm sure. Mary - as a migraine sufferer too - it helped me to have tests done to eliminate that it was Migraine associated vertigo. It wasn't but they have said that having migraines doesn't help with this. If you don't already - try and see a specialist to give you something for dealing with your migraine attacks. I'm late down the line with this. I have an appointment with a neuro who specialises in migraines at the beginning of May. If this had been sorted out earlier in this madness, then I think I would have seen a quicker recovery! Binx - wish you all the luck in the world with your plans. I took voluntary redundancy from my job in 2006. That was a good decision as didn't know I would be so pulled down by this labs experience! One of my better decisions in life!! BTW - thanks Rich for clearing up the pricing issue on my house!! If it was that price - I'm sure it would have been snapped up way before now!! Even though that massive price drop - still no response - so think we will sit tight for another year or so and see what happens to the market! Keep strong and positive Love and hugs, Gloria xx |
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Thank you B, Anna, Sean, and Gloria for your thoughts and information, much appreciated. I know the medication is not the best idea, and hopefully it will be short term, but she was sooo scared and so was I that it seemed the best thing to do at the time.She had her MR yest and will take a couple of days to get the results back. I am going to talk to her ENT about the therapy. I didn't know that the nerve was permanately damaged.The ENT Dr. told me the low dose valium was to help with getting her back in balance, that there had been a study done and this was the best result of that study. I never thought we would be going through something like this so out of the blue. Car rides at night seem to calm her down, I find that the mornings and nights are worse for her. Does anyone find that to be their case? It really is sad I found out that if you get something out of the ordinary how much dr's don't know, we really still are in the fred flintstone time of medical science.Thank you again everyone and will keep checking back. I wish everyone well. Kathy |
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Kathy, I still take meds. I try to to get through days without them, but only make it here and there. I can move my head as much as I want and can now walk in the dark (was a mess in the dark before), I can ride my bike, and do much more. I have that sense, as you put it, of depersonalization and foggy brain. I am tired a lot. I have never slept well and that doesn't help. I have some serious issues with concentrating and thought process. Not everyday, but some days. I have always had anxiety and the labs makes it so much worse for me and everyone who didn't have it before. I am at 23 weeks. I've never had the spinning room, but rather a feeling of being pushed down and like I got off the merry-go-round. I have always been able to drive, but I still cannot work full-time. It has not been fun and it is just horrible your daughter has it. I think what Gloria said is right, she is young and she'll recover faster. These people on here have been just great and when a new symptom arises I just ask and someone always knows. I think it's good you're on here too as you are going through this too!! You need some comfort as well. Tell her we're here and she's not alone. Best wishes eveyone!! B |
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I forgot to ask if this thing can affect vision badly? When she got this along with the stomach upset, the extreme dizziness and anxiety she started seeing stars, shadows and had vision static. We were out today and she was drawing on white paper with pastels in the car, when she looked up she saw blurry spots that were pulsating. Anyone else have these symtoms? Thanks again, Kathy |
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MSK yeah it really messes with vision. i had pretty much all the same symptoms. dont worry. just wait for the MRI and chances are highly in your favor that its just a ear infection :) |
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Hi Kathy, Just to reassure you that all the visual stuff you mention is normal with this. My vision was blurry and 'off'. I wear glasses and had Varifocals which allowed me to read and see in the distance. I had to stop wearing those and go to single vision glasses because my brain couldn't cope with the varifocals. The stars, spots, and photosensitivity (that's what they call shadowing apparently - learnt so many new words since this LOL!!), have all been part and parcel. They wear off as time goes by and aren't as prevalent and even disappear. Mine return when I'm having a little 'blip'. Also, as with me, my husband used to drive me out in the car to make me feel better. Sooo weird! And again, my brain's reaction to this was also having upset stomachs - just like I'd eaten something off. At this stage, Kathy it all seems an impossible situation - but it will all get better. Hugs to you and your daughter xoxox Gloria |
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Thanks B and Gloria for your words of encouragment. I check back all the time now. I'm so glad I found this site. It is very hard to see my daughter suffering with this, I would rather it be me. Feel so lost and alone and scared, I've run around so much this month to try to get help I'm exhausted and running out of ideas. Is everyone in England? We're in Southern California. Very gray southern ca. today. I notice a long delay when posting here. If anyone wants to facebook me my name is Kathleen Rejniak I think I'm the only one in the world with my name. It is so frustrating that dr's appointments are always so far down the line. It's like "well I don't feel good now, why do I want an appointment 3 weeks away"? My daughter's name is Sydney, very sweet girl. Played funny video's for her when she woke up today, seemed to help a little because she always feels so bad when she wakes up. Does anyone else find this also? There are so many people on here, has anyone ever mentioned having a convention, or are there ever any going on anywhere? Take care, Kathy
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Hello Kathy, Just picked up on your posts. To help re-assure you - everything your daughter has symptom wise - I have had myself - including the bad anxiety stuff. I got clobbered with Labs in mid Dec 2010 and most days now am 95 - 99 % good. Some days I even feel 100%. Unfortunately recovery for most is over a time period which ranges from a few weeks to several months - but things get better as time passes. The first 12 weeks were the worst for me - then things improved rapidly. My only advice: Read the back posts on this blog - it will give you a better understanding of what your daughter is dealing with. Every symptom and sensation caused by the various inner ear probs has been discussed here by the people who have experienced them. You will also pick up on the terminology used by the medics - this will be invaluable moving forward. Avoid the meds where possible - although I know this can be difficult in the early stages. The meds can hinder recovery and compensation. The sooner the brain re-compensates the sooner it learns to be non anxious and the anxiety will subside alongside the other labs symptoms. Hold tight - your daughter will get through this. Ask your questions here - most all have been where your daughter is now. Stay safe, BINX1965 |
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Kathy, I HATE the mornings and they were super crappie in the very begining!! They are still tough! I live in Missoula Montana!! I find the weather can sometimes effect how I feel. Something to pay attention to. I would be a mess if my 17 year old had this. I'm thinking of you both. Sydney will recover! I'm SO much better now then I was in the begining! She will notice a difference soon!! B |
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Hi Kathy So sorry that your daughter is suffering all this at such a young age - she must be terrrified. But it's great that you are there for her and this is what she most needs at the momen -, someone to lean on. All the symptoms you have mentioned are typical of labs. In answer to your question about feeling worse in the morning - yes, I used to feel like this. I would feel worse in the morning for the first few hours after rising just like your daughter and this is probably because she has been lying down all night and her brain is working overtime trying to make sense of everything when she gets up. The increase in symtpoms at night time is because her brain has been working hard all day and is tired out! Tiredness increases symptoms. Kathy, as BINX says - try and steer clear of the meds - they definitely hinder recovery as they 'numb' the brain so it will be harder to compensate. I know it's hard but it's worth it. Get her out for lots of walks and start her on VRT. Be there for her through all the tears because if they haven't come yet, they will! It's a very tough condition to deal with. I do hope she feels better soon. I'm off to Scotland tomorrow for a week. Cant' wait. Yippee! Hope everyone has a good Easter weekend - don't eat too many eggs! Sandie xx |
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Hi all, Just looking in to say a very Happy Easter to one and all. Despite a horrid migraine ( which now is the main thing that makes me feel more dizzy), I'm not feeling at all bad. Coming up to 2 years now - so will be pleased to see the balance of feeling odd and not 100% most days to feeling loads better most days and the odd off day. Hopefully that is where I am at now. Have also got my hubby to pay for me to join a local leisure/health club. So have started to do Pilates twice a week, some gym stuff and swimming. Muscles ache, but in a good way. We'll see how long the enthusiasm lasts LOL!!! Hope all my old buddies - Claire/Jemma/Sue/Sandie/Binx/Sean/B et al - are keeping up there near the 'winning' square on our game of snakes and ladders! Sean - your job in Yellowstone sounds amazing - have fun! Kathy - as another aside - my mornings have always been the worst for me. At the beginning few months I'd wake up nauseous, sweaty anxious and horrible stomach upsets as well as swirly headed. That has gone now except if I have had a bad day, but just feel like I've got a bad hangover now (sadly not had the enjoyment of getting it though!). Sydney will get better and before long will start to see the difference from when all this nightmare started. A lot of people on here are from the UK, but equally quite a few from the States and Australia - labs has no boundaries! Also, Kathy if you are on Facebook you can log on through that - it's much quicker. When you click above to sign in - click on the Facebook link that comes up. Enjoy Easter - not too many chocolate eggs though!! Hugs and love,, Gloria xx |
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Hi to you all and a very "Happy Easter"....need a bit of encouragement please! Really struggling to go out on my own...feel like jelly in a shop...thought I was going to pass out waiting at the meat counter yesterday, then my legs just go to jelly for quite some time...didn't know how i was going to get back to the car (My husband was with me and driving!) What should I do, i have waned a little on the vrt, not great dizzies now but so anxious..just not me, i wake in the morning dreading the day and feel so sick and shakey. Would I benefit from counselling, the doctor says I have bppv which has triggered the anxiety...any ideas please, just need some help, would I benefit from ie; citalpram or something to break this cycle, sorry to winge on..just not a good day for me! Love to you all Gill xx |
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Gill, I'm sorry you are having such a hard time. I think an anti-anxiety med for a short time would be benefical!! I know what is said, but I don't think a small dose would hurt you at all or your compensation. You can't live your days like that, filled with dread. You deserve some peace and calm. I hope hope hope you feel better soon. Damn this stuff. B |
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Happy Easter to all on here. Havent posted for a while a life has been quite hectic and stressful but not in a good way. Both my parents are undergoing treatment for cancer and not living close makes it harder. Also my oldest daughter was studying for her A levels but decided school wasnt for her and was also struggling with an eating disorder due to the stress of studying and has been lucky enough to find herself a job as a trainee dental nurse, but does involve travelling around to 3 different dental practices in Kent. Has been hard after having a daughter as a school girl and then straight into work where she now does 12 hour days including her travelling! Stress levels were really high to begin with if she was 10 minutes late, thank goodness have calmed down a bit now. Have also noticed her eating has improved a little as was really worried as she got really tiny but like this illness it is slow progress to getting better. Am having better days now with the balance a few blips now and then. Familiar symptoms of jelly legs, neck ache, feeling of unbalanced, headaches tiredness, ear pain and noise sensitivity. Find i am coping with it better now and it is unfortunately a way of life for many of us. Shop lighting is still a killer but think becaused we have had this illness so long its like we are in charge of it now not the illness in charge of us. Have been reading everyones posts. Glad some are going up the ladders, it is a long hard slog, and patience is the key to coping with this. So sorry Kathy that your daughter is having to deal with this cruel and unknown illness to many. I have a 14 and 17 year old and would be so sad if they had to deal with this debilitating illness. It sounds like you are a wonderful support right now to her, which she will need. Her age is on her side and i am sure her recovery will be quicker than many on here. This website is a life saver for many as there is so little understanding of this illness. Tell her to be patient and to try and be active when she is up to it without over doing it. The begining of the illness is the hardest, and it may seem hard but each day or week hopefully she will see a little improvement at a time. Hope everyone enjoys the Easter break, what gorgeous weather we are having in the UK. Trying not to eat too much chocolate but it is Easter after all. Love to everyone on here, may we all carry on upwards, think we all deserve a break from the dizzies. Lots of Love Wendy XXX |
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Thank you sean, binx, b, gloria, sandie and wendie, Again I'm so glad I found this sight I find it helps when I'm reassuring her during the day that I can say "yeah they felt the same way" This morning she got up and felt so bad and I told her Gloria said mornings were bad for her to, and she said "she did"? and just that little thing seemed to help alot. She also feels real shaky in the morning. Has anyone tried sleeping sorta reclined in a chair at night instead of lying down flat? If so, did it help? Also, the monthly curse makes things worse I think,which we've been dealing with this week. I tried to look for where you can sign in and hook up to facebook but didn't have any luck. Happy Easter to everyone! Kathy |
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just went to the doc today for a sore throat and coughing up nasty stuff. turns out i have a upper respiratory infection :p they gave me a bunch of allergy medication which seems to help alot. she also said i have fluid in my ears but this infection doesnt seem to mess with my equilibrium thank god. i'm staring to drive again YAY! still on the same level as BINX. all and all i feel good. i still have off mornings like almost everyone but they dont really bother me anymore since i have been dealing with this for about 7 - 8 now. my allergies bother me more than my ear problems which mean i'm doing REALLY GOOD. i cant wait to start getting hay fever :D MSK, if you have any on the spot questions you can find me on facebook SeanE.Sullivan@yahoo.com i'll get the message as soon as you send it. even though i'm not a doc i still might now something you need. i also live in the USA and you should try giving your daughter allergy medication like zyrtec, or clairton they can help alot sometimes with the drowsyness. its worth giving it a try :) HOPE EVERYONE HAS A HAPPY EASTER! |
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Hi all, Hope Easter is being kind to everyone. Gill - so sorry to hear you are not having a good time. For a short while when I felt really bad with anxiety, I went on Amitriptyline 10mg (I can't take Citalopram or Prosac because of my migraines). I didn't like being on it although I felt OK and it did the job. Slept like a baby too which was great as sleeping with this has been an issue for me as well. I stayed on it for 3 months - only because I really don't want to stay on them. Went back on for a couple of months a little while back, but am now off of it - and keeping fingers crossed, seem to be fine. So whilst you feel so awful Gill, B is right, take something to help. Also, whilst I don't think VRT is the b all and end all, I think it helps. My VRT physio said we all should really do a little VRT every day to keep our brains compensated. For me, it is like exercise, I don't really enjoy doing it and have spurts of enthusiasm. VRT I do it for a while then lapse, especially if you feel better. Worth a try though. Keep positive Gill xoxo. Wendy - great to hear from you - had been wondering how you were doing. Am so so sorry to hear of your situation with your parents and family. You just don't deserve all of that worry on top of all this as well. Have been there myself with ill parents and all of that which goes with the territory. Take just a few minutes out for yourself if you can and relax a little - nigh on impossible I know, but it won't help the old labs if you get overstressed. Keep venting on here Wendy if it helps. Hope things become a bit more stable for you very soon. Lots of love xx Kathy - at first I had about 6 pillows in bed as I couldn't bear to lie down too flat as well as sleeping in our reclining chair. Gradually got down to 3 pillows and now have 2 which is my norm. I still felt yuk in the mornings, but that too fades from awful to not brilliant to OK and now mostly fine. I didn't want to take meds to help with the nausea, so I drank ginger tea. It was a good brand from a health store and not a cheap version that some supermarkets sell that don't have a high ginger content. I found that helped too. I dropped 28lbs in weight then - that was the only good thing about labs LOL! - I could afford to lose that - alas, most has gone back on now!! I also bought valerian capsules from the health store to help with the anxiety - again a non-chemical, non-addictive supplement. That helped when I was off the Amitriptyline. Monthlies for us girls doesn't help either. If Sydney can get out into the fresh air and have a good brisk walk, run every day - whatever - even if she feels bad - it will help enormously. Kathy when you come onto this site and where it says 'sign in'. Click on that then a page comes up with Facebook at the bottom of a list of about 3 things you can connect to on the top right hand side. Click on Facebook link and wait a second or two, it will then ask for your Facebook login, then it brings you back onto this page. You write your comments, then submit. It doesn't have to wait for Rich, who set up this site (bless him!) to approve your comments. Anyway hugs to Sydney xoxo and you of course. I'm not too bad, the old head has been a bit troublesome these last few days, but as you say Wendy, you get used to it somewhat and like we all do, carry on as we all have to. Keeping the faith, keeping positive, onwards and upwards and all that! Hugs, Gloria xx |
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Happy Easter everyone! I have been doing ok these last few weeks then hayfever hit me a few days ago and now I feel wozzy, groggy and drowsy and altogether not too good. So frustrating as it makes all the symptoms come back tenfold. I do hope it settles down a bit. It seems such a shame that the nice weather brings on hayfever which is not good for anyone with labs. Glad others seem to be improving and picking up a bit. Gloria you sound a lot better lately. How is your job going? Gill thinking of you and hoping you feel better soon. Kathy really feel for your daughter. I started with this 2 years ago at this time of year and it really was awful. Things have improved but unfortunately not gone away. It is different for everyone though and I am sure your daughter will start to feel better soon. Hang on there! Wendy hope you and your daughter feel a bit better. So sorry to hear about your parents, that kind of stress is not helpful with this condition and it must be so hard for you. Everyone else hope you are having a great Easter Take care Jemma xxx |
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Hi everyone, hoping Easter was ok for all. Kathy, hope Sydney is doing ok. Like Gloria said, sleeping with 6 pillows to begin with does help, i mostly had 4 as found woke each morning with a stiff neck! Also when waking i just used to sit on the edge of the bed and focus on one thing before rising, in fact i still do this, it just gives all the nerves or wires in the head time to adjust. I did use to be worse in the mornings, but now ive noticed about 6 in the evening is my worse time, the symptoms with this really do change from day to day. Also to help with the nausea feeling i used to and still drink peppermint tea, quite refreshing. The monthly curse does play a part in labs. I find just before my symptoms are much worse. This is all normal for her, not nice at all. Tell her to keep strong and she is lucky to have such a caring mum. XX Gloria, thankyou for your words. Like you say infirm parents are part of our age group. It is our time to take care of them and give something back. They really struggle to understand my illness, and dont like to burden them with what its really like. Its like you put on a brave face and do all their chores, and get home feel like collapsing!! Sorry to hear of the slowness in the house sale. Such a bad time isnt it. My friends husband is a mortgage broker and he said in the last month things have really picked up so fingers crossed. It will happen when its meant to for you, but is frustrating for you at the same time. But we are quite used to being patient what with this illness. When are you going water skiing? You sound like you are on the up apart from your headaches, hope it stays this way. Its so unpredictable thats the worst thing. The other day i was walking back from the shops and my balance just went out of the blue and just felt i was leaning to the left. Couldnt wait to get home as felt like i was going to fall over! Im sure we must look drunk half of the time. Hope your job is going ok. XXX When you sign in Facebook is it just for this sight or is it the general facebook? Probably a silly question but im not a member of facebook. Anyway love to everyone, can hear a bit of easter egg calling me from the fridge to eat it! Take care, Love Wendy XXXXX |
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I see the sign in now. Geez, I never noticed. Happy Easter all! We had some friends over and I am now pooped and having some trouble. I get icky when I do so much. I am super tired lately as the sleep has been seriously lacking. I get so frustrated with the neverending BS of this illness. Hope you are all ok today and enjoying your families. Wendy, sorry about your folks and all the stress, damn the stress. Kathy and Sydney, hope each day get a bit better. Sydney, there is hope and I know you feel so alone and so trapped. Please keep your head up! I believe you will get better fast. You have a great mom to support you through this. Best of days to both of you! Gill, I hope you are feeling better. I live with anxiety and I HATE IT!! Talk to your doctor. Gloria, you are sounding a bit better. Stupid headaches!! Still no luck with the house? Sean and Binx, I'm glad you are better. I am sorry you are sicky Sean. Jemma, Lucy, and everyone else. Think of you all! Heres to great health! B |
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Hi all, Well, having jinxed myself by saying I'm quite good lately - today - very giddy, nausea, shaky, all the stuff. Not as horrendous as at the beginning, but enough to make me lie down for a bit! Kathy - tell Sydney I was raising a cup of ginger tea to her this morning saying snap! Like you B - have been rushing around lately, working, joined the gym and swimming - so only to be expected. It could be because I've upped my activity levels. Need to carry on though and get this damned brain of mine used to it! My hubby and I have also been looking at doing a mega holiday/vacation next year (I'll be at 3 years with labs - so hope can manage a trip by then) visiting our relatives in Vancouver again, but doing the Rockies/Alberta/Vancouver Island and the trip up the inlets to Alaska!! Probably I frightened my labs brain to death with all of that LOL!!! Hope we can arrange it though. So, back to doing my VRT (see - lapsed for a bit and this is what happens! Jemma - good to hear from you. Am really enjoying my little job. It's not too strenuous, no real responsibility or pressure, but just gives me enough to do. Wendy - yes - my water-skiing expedition is 'supposed' to be on June 19th!!!!! Do I feel I can do it - at the moment no! Thankfully it is only a group of friends and is nothing serious, so if I don't get to do it, doesn't matter although after all this labs stuff, it would be great to feel a sense of achievement in something! Well, back to taking it easy today. Hope feel a bit better tomorrow and back on the up! Love and hugs, Gloria xx |
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Hello and Happy Easter to everyone, Havent been on for a while so just spent some time triying to catch up on all the posts (before it makes me too dizzy!!!!) nice but a shame to see some 'oldies' on here and sad to see some 'newbies' too, looks like some are really suffering especially Sydney, Kathys daughter, so young :( Kathy I really hope you get some reassurance & answers on here it realy helped me especially at the start of this early last year. Everything you have explained about your daughters symptoms sound very similar to my own and so many others on here and nothing you've said has sounded alarming, if that gives any comfort! The most important thing is when she feels ready to try & be active to give the brain the chance to recompensate for the damage caused to the balance system just gentle walking and with someone else too, one, for moral support but two to make her walk & talk & move her head not just focus on one point on the ground (valuable info from my VRT therapist) I am now able to run 3 miles several times a week (took a while to build up to this) I am feeling so much better than this time last year, not 100% by any means but better. My worst times are also 'time of the month' this is due to the fluid retention in the body which also affects the inner ears, if I get a cold/virus/stomach upset, my ears will always know it first! Last year in the early weeks/months I had so many scary moments when I had that '999(911)' emergency feeling luckily I never made that call! My anxiety was dreadful & I was on a low dose of amitryptyline but came off as soon as I could. I now take herbal/vitamins only, exercise and relax when I can & I am making a slow but definite recovery. Lots of love to you both and I really hope things improve slowly but surely Jemma I think I may have hayfever (1st time, I'm only 40) I started with a cold which affected my sinuses felt dreadful went to the docs last Monday (must have been bad!) & he gave me anti biotics just finished them & not sure they worked still stuffed up sneezy & dizzy in the evenings......but I do honestly think I am improving dizzy wise, I'm keeping up with the running & now like running with a friend or my hubby as it is good VRT with the head moving while talking!! Hope you are slowly improving too although hayfever is rubbish! Gloria glad you had a nice weekend away does that mean Gloria's Hotel was closed over easter :) Claire's Hotel was!! Shame about your migraines but I really hope your improving a little too, we really need to finish that damn game of Snakes & Ladders. Wendy, you are having a really hard time of it all those worries and with your own too, must be really hard for you. Hope your daughter enjoys her new job I was a dental nurse went straight into it after school worked for 2 years at a local practice. That was in the days before you had to be registered/qualified I did love it though and all these years later I could still chart a check up!! Good luck with everything lots of love to you I am off for a wonderful few days to Ragdale Hall health Spa next Monday, I went last May, when I was at my worst, so hoping to enjoy it more this year and who knows if I go next year I could be symptom free!!!! $ weeks til Portugal and 'the flight' :/ Love to eveyone else on here Claire xx |
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Hi again, Claire, nice to hear from you. You are doing great with the running. Think the fitness does help, just stick to my walking for a while! I'm sure you will enjoy the Spa better this year with your symptoms slightly better a year on. A bit of pampering time never hurt anyone. How are your girls, did your oldest enjoy her school trip in Spain. My daughter is enjoying her job. was so weird not having her here in the Easter Hols. It seems there is quite alot of training involved, but at least she is less stressed than at school. Hope your hayfever or sinus trouble clears up, as that makes a normal person feel dizzy! Me and my sister have booked a weekend away in London in 2 weeks time, will be great to have time to ourselves for a couple of days. I just wish we could book our 'Labs' away for the weekend too so you can be guaranteed dizzy free time! Jemma, hoping your hayfever not troubling you too much. The symptoms are just like having a cold all summer long. Its no fun especially with labs on top of it. We desperatley need rain here in the south and everything is so dry and dusty which doesnt help. How are your hens. Gloria, sorry in your last post you had another blip. It does make you wonder when we dare say we have had some improvement, wham bam back it all comes. Your holiday sounds fantastic, what a way to celebrate the end of labs (fingers and toes crossed). Hope you are in training for your water ski, i suppose you could hang onto the back of your husbands car while he drives through a puddle! What good VRT this would be if you incorporate some head movements with this. B, sounds like you have been overdoing things, you try and rest up when you can. Before this i never had to think about doing anything, just took it all for granted and got on with it. Now i have to plan my days so im not overdoing it because when you finally sit down in the evening, feels like your head is inside a washing machine. I also find sleeping with this hard, have no problems in getting of to sleep but seem to wake in the early hours and the cannot get back off. Hope your daughter is doing ok now. Sean, good to hear you are starting to drive again, its good to get the independance back. Keep on the up! Love to everyone else on here, im not too bad today just a funny head and a bit wobbly, sounds weird to a normal person, got to be good for the next two days, as hospital trips for both parents both at different hospitals! Oh well will be in the right place if im having a wobbly day and fall over! Take care all, Love Wendy XXX |
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Hi, I posted a little while back, about getting this in December and starting VRT. I'm now in the fourth week of VRT and it seems to have really helped. The last couple of days I didn't do as much, and today I really feel it. I feel all sorts of things moving and changing in my head while I do the VRT. Congestion seems to clear up a little, and things crack and creak and click way inside my head and behind my ear, as if there are things loose and moving around. I probably always have had a screw loose, but now I feel like a Frankenstein monster! My doctor thinks I have Meniere's which terrifies me, so I've looked up stuff about Meniere's and started taking a few things that have helped others with Meniere's. One thing is lemon bioflavanoids (you can take them in pill form but they come from lemon peel, so I just eat the slice of lemon in my tea), which seems to help with the congestion and fluid in my head. The other is Beta 1,3 Glucan, a Vitamin D-based immune booster. It's only been a week and I think I am already noticing improvements from taking these two things, but I don't know if it's coincidence or not. The Beta Glucan is apparently used also to fight cancer and shrink tumors as it's such a powerful immune booster, and for me I'm hoping it will make me stronger so I won't keep getting colds which make my symptoms so much worse. If anyone's tried any of this, let me know! And I'd especially love to know how VRT works/ doesn't work for others who have stayed on it. I know people write that they are going to buckle down and do more VRT, but I haven't seen too many followups. I wonder if it's something I'll have to do for the rest of my life, to keep the signals right? Thanks, Anna |
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Hi, Everyone! I damaged my shoulder moving my sister and it is just getting worse. Has anyone taken pain meds or muscle relaxers with labs? I'm nervous, but am so miserable!! Any ideas? I think I am taking way too much advil!! Anna, I hope you dont hae menieres. I'm glad you have had some luck with VRT! I will try the lemon peel for the allergy congestion I constantly have. Jemma and claire, I have rotten allergies and feel for you both. I hate them. I take claritin and usually use steroid nose spray, though I am not now. Best of luck! If you come up with anything let me know! Wendy, how are your parents? Your daughter? My daughter is much better and we think we have a good answer. The gastro doc said it is like a growing pain in the stomach/bowel area. He gave her a ani-spasm med. It is a relief. I hope everything gets better for you. GLoria, I'm sorry you are still having headaches. I have had some wicked sinus headaches lately. They are aweful. I feel for you. I'm glad your job is going well. I so wish I could go back to working full time. Times like this I wish I had a husband. =( Kathy & Sydney, hope you are feeling better! All else I missed, good health!! May we beat this monster to the ground!! B =) |
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Hi guys Ive been reading about you all and Gloria hope you are out of your blip , you too Melissa! Sandie you are a trooper and ignore the people who dont believe they couldnt begin to imagine what inside 'our ' world is like ignorant people!! Grrrrrrrrrr Well Ive had a bad blip Im on 18 months of this now and i need some advice my head has it up and down days to say the least but on better days Im getting panic attacks (Ive always suffered with these in the past) they went away for a while but have come back. I hear all about you guys walking distances and running etc and Im so jealous I wish I could do more but fear of my dizziness makes me so anxious and scared :/ I go to work and go shopping etc but yday I took the kids to the farm but felt so panicky and just wanted to go home and the more anxious I get the more wobbly I feel and I dont want to be like that anymore. Im on a small dose of amitriptyline should i ask for something else? I want to go on holiday again and take the boys out and i know I might get dizzy but I dont want to be scared anymore. I went to my GP as I had got the wrong date for my neuro appoinment (they didnt send a letter out and I got the wrong day) well anyway he was so rude to me and having a go at me saying 'DO YOU WANT TO GET WELL?' and I came out just crying dont think he realises how shitty I feel mentally and physically most of the time. I hate going the doctors now they treat me like a mental patient. Should I ask for some more Anti-Ds? I want to walk my son to school instead of driving but last time I walked I had a massive panic attack in the street , Dont think I will ever be a normal person again. I also get so dizzy in bed and am very dizzy when I get up in the morning has this ever gone or got better for the long timers as I feel its never going to go for me xx |
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Hello Donna 24 I have been where you are with the chronic anxiety and panic rubbish. Email me at: fiskerton@yahoo.com and I will send you some info that may help pull you out of that hole. Please do not trawl the net looking at anxiety and panic info / cures - this will just make things worse. Stay safe, BINX1965 |
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Hi Everyone, My computer has been down so haven't been able to check in this week. At my sister's so just a quick note. Sydney had her first good day in 2 months on Sunday,but then woke up Monday with a bad cold, so that kinda made her anxiety worse, we get her results tomorrow from the neurologist, kind a nervous... Binx I would also like to email you for that anxiety info you have if thats ok.I miss getting on here when I need to , hope my computer comes back soon. Take care everyone. Kathy |
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Hi everyone Just to add to your notes about allergies - I too never had a single allergy before labs - now I have quite a few. Hayfever every summer and dust allergies, asthma worse, post nasal drip. I do suspect that they all keep the symptoms of dizziness/balance etc going and when I am bunged up I know I am going to have a bad day. To keep this under control I use Benadryl antihistamine pills, a steroid nasal spray (Beconase) and a saline nasal spray. Without these I know I would be a lot worse! Donna - Please don't take any other meds on top of the amitriptyline - you shouldn't really use any drugs regularly because they do not help with your compensation process. All they do is numb the brain and the aim is really to let your brain get used to the dodgy signals it is now receiving from your inner ear. Try not to get too worked up about the anxiety as this will pass. I suffered for a good few months with this in my first year with it but it has more or less gone now though I still have anxious feelings if I start to feel ill when I am out somewhere. I have never actually suffered a panic attack but I really feel for you as I know they must be awful. Your doctor is an idiot. In my experience they know nothing about this at GP level. Even the so called 'experts' are unhelpful. They all seem to think that it lasts the standard few weeks/few months and anything after that just doesn't happen. Well as we all know here it does happen. I am at 6 years now and I know people who have suffered for 20 years or more. Donna I know I have suffered this condition for a long time but rest assured that it will get better for you as it has for me. No, I don't think I could actually go back to work but I do have a life and I am not so afraid when stuff starts to happen. In the first couple of years fear played a huge part for me but then I used to think 'right I am going to go shopping today and if I fall over someone will bloody well have to pick me up!'. Donna, I have NEVER fallen over and as long as I have my mobile with me (to get someone to pick me up) I can do most things. Life is still worth living! As for your dizziness in bed and on rising in the morning - it has gone for me. Also the 'night blindness' where I used to stott off the walls or fall over the bed when I would get up through the night has gone - thank god! Kathleen I am so glad your daughter has had one good day! Soon it will be two good days, fingers crossed for her! Little memory today when I was out - I started to drift to the left (across the path of my hubby). This was a huge problem for me for a couple of years, I just couldn't walk in a straight line - always veered over to the left! Mmmm I think I have suffered just about every symptom with this condition lol! Take care everyone Sandie xx |
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Hello, I just wanted to share I went and got the blood test for Lyme disease today. I almost hope it's positive. I want to get back to life!! And if that is it, it can be fixed. I hope everyone is off having spring fun! Kathy, that is good news for Sydney! I'm am very sorry she is sick. I am afraid to get sick. I hope she is well soon. My daughter takes eccinachia(sp??) with C and Zinc and it works great. I take it too if I am exposed to sickness. I get it at target, it is a gummy vitamin for immune protection. Worth a try! B=) |
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Hi again, Wanted to let you know what happened at the neurologist today and get your opinions. First Sydney went to school today and didn't wear her glasses,it was hot here today and in the sun didn't wear her sunglasses and then she had a root beer, after that she had a terrible optical migraine, where she lost her side vision and she freaked out it was terrible. but worse we went to the neurologist she wouldn't even hear that i was telling her that sydney was feeling better until she got her cold. Anyway she said that people with labs get better in 2 or 3 days. I said no,it goes on for weeks or months. so next she's telling me she wants to do a spinal tap in her office! Has anyone dealt with this craziness. She scared sydney so bad. Can anyone tell me again if anyone has had the optical migraines with this,and the vision snow? Remember anyone can go to my facebook if its easier. ttys, kathy |
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Hello everyone in Labs land, I haven't posted for a while,am concentrating on my return to work program which involves numerous appointments and meetings to prove I am well enough to do the job I've done for 20 years. After 6 months of this hideous illness I think I am nearly recovered. There was a time when I did not believe I would ever recover so to anyone out there who is convinced they may never see the light at the end of the tunnel I am living proof that you can get there eventually. I am still not totally symptom free but I hope and pray that one day I will be. Kathleen...... you mention in your post about the effects of Labs on the eyes. A common symptom is something called 'eye stiffness', which literally is what it says and causes problems with vision such as difficulty focussing, fuzziness and blurring also a sensation that your eye muscles won't move your eyes in the direction or at the speed you want them to go. Mornings tend to be worse when you are still a little sleepy, at night when you're tired and if you are doing an activity which may put stress on the eyes eg-reading, using the computer. At the beginning of my Labs my family did many internet searches on my behalf, my eyes were terrible at that stage including many incidents of Nystagmus due to my inability to balance (this is where the eyes move rapidly from side to side as they attempt to orientate a body which the inner ear has told the brain is spinning rapidly). There was quite alot of info including a young guy in the States who virtually lost the eye sight in one eye during the illness, caused purely by the Labs, it did recover as he overcame the illness. If you read back through the old posts on here you will see that many sufferers had and have awful migrain type headaches, it does seem to be a symptom commom to Labs plus other weird eye issues. I did take maximum doses of parcetamol and nurofen for the first 2 weeks of the illness, on my doctor's advice, and didn't notice any awful side effects, they helped alot with the general eye, head, neck achey feelings. The general swelling in and around the inner ear area with Labs seems to impact on other close organs causing worrying symptoms. Though it does sound like this is what has caused your daughter's awful migrain perhaps an optition check up would reassure her that it's nothing serious??? This illness and it's strange symptoms can be totally terrifying and it isn't difficult to understand why she is so freaked out, believe me when I say that everyone on this site has felt the fear!!! It does not help any of us when medical practitioners insist that Labs is something very mild that you usually get over quickly- that has not been the case for your daughter or anyone posting on here and probably hundreds more too who haven't been lucky enough to find this site. I am so sorry your daughter has to suffer this terrible, debillitating illness. You will get lots of support on here though. Best wishes. Donna 24...........Re- Amitriptyline, I have taken varying doses of this drug for the last 25 years and am currently on 25mg at bedtime. Since the Labs has started improving, and my plan is to return to work, I have become concerned about the poor quality of my sleep, (this is caused by having to sleep in one position all night as turning onto my back or left side sends me spinning). The Doctors advice was to increase the Ami dose up to 50mg per night as this would help me sleep. I have decided not to do this though because he also warned me that this could worsen my Labs symptoms during the day as it would numb the brain a little making the brain have to struggle more to concentrate on the balancing process. When I return to work I might try just doubling my dose at weekends only and see if I can catch up on some sleep like that. I was initially put on the Ami for severe panic attacks following a breakdown I suffered and I can most definitely say that this drug has been my utter life saver, particularly in the early days, I have never not taken it in all those years and am not aware it has ever caused problems for me,but higher doses do make the brain feel abit foggy which is not helpful when you need to be alert to cope with and heal the Labs. Panic attacks and anxiety are terrifying to experience and do seem to be made worse by the Labs. If it wasn't for my friends and family I would never have stepped outside the house again due to the Labs, the dizziness and disorientation were awful and reading the posts on here it is certainly a problem for alot of the Labbies,never feel you are alone. Check into the link from Binx, it's very informative re- anxiety disorders and could offer you the help you need. Something I try hard to remember when my 'funnies',-as I call them, get bad is 'always remember that anxiety / panic attacks make you feel like you are going to die but infact they are harmless and have never killed a soul. I think it's terrible that your Doctor made you feel so upset, why, why, oh why do they not understand the impact this illness is having on people, they just don't seem to have any insight into it at all, if you can't rely on your Doctor to support you and reassure you, it's not surprising your struggling with anxiety, so frustrating!! Maybe they should all read the posts on this site, now that would give them an education!! Keep strong and I hope you are feeling much better soon. To everyone else in the land of the Labbies,..... keep going up those ladders and don't forget to wear your T-shirts with the slogan on ' Legless with Labs not Lager'!-(Just in case you fall into a hedge or the chest freezer at Asda). I've currently got everything from my legs to my eyes crossed for my impending return to work so it is highly likely that I WILL be found at some point in the hedge, freezer, gutter, dustbin...I'll look out for a fellow Labbie in which ever place I arrive upside down! Sharon XX
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Kathy, I firmly believe you need a new Dr. No optical migraines, just blurry vision and trouble focusing. This presents in a hundred different ways. I hope you hear from others soon to get some more feedback. Tell Sydney I'm thinking of her and just pissed in her honor. Good luck ladies. B |
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Hi to everyone, old and new. I can only reiterate what Sandie says, and that is that I have suffered most of the symptoms that a lot of fellow sufferers have had or are complaining of. I too used to and still do feel worse first thing in the morning and sometimes it is a real effort to get going in the morning. Although I feel unable to commit to a job at the moment I am able to do most things and as long as I don't over do things have a good happy life. At the moment I feel quite well, although I do have this odd fluttering sensation in my bad ear. I also suffer with eye sight problems when my dizziness is bad and find mornings are worst as I can't focu s properly,for me this has been diagnosed as vertiginous migraine which I take Verapamil for. I hope this post is helpful and shows that although I've had this problem for a long time , I am learning to live with it. Love to you all Sue xx |
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Sharon (uk) Your post did make me giggle at the last paragraph. I am hoping to wear the t-shirt 'legless with lager - not labs' in the near future. It appears that labs and lager both have the same end result i.e. I am likely to be found upside down (at some point) in a hedge bottom, freezer, gutter or dustbin. Bring it on !!! Stay safe everyone ! BINX1965 |
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Kathleen...have you ever considered Lyme for your daugther? Your story is very familiar to mine and others who were finally diagnosed with lyme (after being misdiagnosed and testing negative for months). Something to consider. Your neurologist comment sounds very similar to mine. THere was actually an article in the Boston Globe about my story today. http://www.boston.com/ae/movies/articles/2011/05/05/documentary_shining_a_spotlight_on_lyme_disease/ I left off the part of being diagnosed by my ENT with Labs when it was really lyme. B...good for you! Do you know what test or lab is doing your lyme test? Just be ware that the standard tests can miss 50+% of the cases. IGENEX is the best lab. Be sure to get a copy of your test result to see if you have any bands positive. A lyme doctor will take positive bands as meaning proof of exposure even if the test doesn't meet the conservative CDC standards. B |
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Brad, I'll do my best to get that. I have no idea what kind of test they do here as Lyme is not often prevalent in Montana. I will just have to wait and see. I had no idea there are Lyme Drs out there! We'll see. I almost wish it would be positive so this can start to be done already! How are you in the treatments? I am better, a lot better, but still suffer a listing, foggy brain, vision issues, and mental retardation everyday. Enough we all say!!! Spent the the morning in the ER with my daughter. She was better, but it is back. Got her on pain meds and antacid meds. Quite the day so far and that is not including the other family medical crisis's we have had this week. GEEZ! Hope you all are doing better and making headway. Good heath! B |
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Brad........... Re- Lymes, my next door neighbour has just told me that her daughter in law's Doctor has told her he wants to get her tested for Lymes, my neighbour asked if i had ever heard of this illness, thanks to you I had. For the last year or so her daughter in law has suffered with constant fluey symptoms, ear problems -(noises, deafness, blocked feelings), achey and blocked sinuses, neck pains, head aches and sore throats, all very serious for her as she is a professional singer, she has gone backwards and forwards to the Doctors with these recurrent symptoms. She lives in Scotland UK and spends alot of time walking in the hills, countryside and mountains and therefore could quite easily have been exposed to Lymes. Having read some of the posts on here it seems there is little support out there from the medical profession in relation to the subject of this illness, hopefully people like yourself are helping to change that. I have given my neighbour the web address for this site and told her to encourage her daughter in law to check it out and look for your posts in particular as they relate to Lymes issues. I do think it's interesting though that her Doctor seems to have an awareness of this condition, as clearly many of them don't and that he is sending her for testing. I will let you know what the outcome is and, if she tests positive, what the treatments she is offered are. In the meantime hopefully she will check out this site and your posts. Sharon.
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Thankyou for your support everyone it means so much to little me lol I have bad tinnitus in my bad ear and a bit in my good I just keep thinking its menieres now I hope it isnt but in one way at least I would have options I suppose. Ive been to work and have 5 days off now yay! I wish i didnt have to work but in one way it gets me out and helps me stay in control more and funny thing I rarely get anixous at work even though I feel dizzy pretty much 24/7/. I feel bad coming on here to moan as you guys are so supportive but sometimes I dont feel strong enough to help anyone else when I feel bad but on better days I hope I can contribute. Your all so caring Thankyou ((hugs)) xxxxx |
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brad, glad to know the word is getting out there about lyme, i'm starting to think i might have it since i have had this "labs" for about 8 months lol i'm going to the doc sometime this week to get tested. how are you feeling now? |
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HAPPY MOTHERS DAY all you labbie Mommys!! Hope your day is wonderful and dizzy-free! B=) |
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Hi folks: So glad you are all taking lyme as a serious possibility for the root of your dizziness / labyrinthitis symptoms. Here is what I can tell you. The standard tests that doctors give for lyme and related co-infections (Babesia, Bartonella, Erlichia, Mycoplasma, etc) are TERRIBLE. In the USA we have a "2 tiered" testing system. The first test is an ELISA test which looks for antibodies in the blood. If you test positive, you are then given a more specific Western Blot test to confirm. Problem is..both of thse tests are poor. I originally tested negative on my ELISA test, so I never had the Western Blot. My ENT therefore told me my dizziness was viral Labyrinthitis. Looking at the symptoms, it seemed to fit the bill for the most part. The "standard" Western Blots are not much better as they only report a handful of the actual bands specific for lyme. So sometimes people test positive on the ELISA and NEgative on the western blot and are told they don't have it. The tests are garbage. My ENT was wrong. I ended up finding a lyme literate physician who gave me a better Western Blot Test from a lab in California called IGENEX. (www.igenex.com) They can send you a free Test kit, but a doctor must sign. You need to pay out of pocket for the tests. The best ones are test #188 and #189 (Lyme WEstern Blot IgM and IgG) I've been in treatment for almost a year and I am almost back to 100%. The best news is..my dizziness and labyrinthitis symptoms are completely gone, other that some faint, mild tinnitus. But I have "normal" balance. My brain fog is gone, stiff neck is gone, head aches are gone, chills / sweats are gone. All that is left is the tinnitus, some mild muscle twitching in my legs, and some mild night sweats. If you are in the USA, you can find a LLMD (Lyme Literate MD) by contacting www.ilads.org, the Lyme Disease Association www.lymediseaseassociation.org and the "seeking a doctor" section in flash.lymenet.org In the UK...www.breakspearmedical.com is one of the best places to go for testing / treatment. Keep in mind there is a huge controvery in the medical community over lyme. It is clearly documented in the 2009 Documentary Film "Under Our Skin" (www.underourskin.com) availabe now on iTunes, Netflix, and On-Demand from most cable systems. Clips are also on Youtube. Sharon...glad your neighbor's doctor is taking it seriously. Just be sure they know the tests are crap. Push them to do an IGENEX test and be sure to get a copy of the report to see if any bands are positive. Those symptoms ceratinly sound like lyme and potentially Bartonella. Sean: It is not normal for Labs to go uncompensated for that long. I would consider looking for the root cause of your labs (lyme was mine.) I believe I did have labs, but the root of it was the baterial infection. B...there are a few folks on flash.lymenet.org from Montana who are being treated and have a doctor in the region (some travel is needed I believe.) Also..what is wrong with your daughter? Glad so many are at least considering getting a test to rule it out. Keep me posted. You may want to look at a list of symptoms in Dr. B's treatment guidelines here. How many do you have?? (or have you had...they often can come and go / wax and wane.http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf |
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Hi all, Not been on for a little while. What with Easter and then our 'Royal Wedding' week-end, friends over from South Africa for a wedding to stay - have had 'Hotel Gloria' open again!!! Head been here and there - a lot 'there'!!! Battled through though. Well, went for my long awaited appointment with the neuro with regards to my migraines and this labs nightmare. As with many consultants he was so far up his own backside (sorry - but angry!) he was so rude and arrogant. I wanted to discuss this medication that Ish, who posted on here earlier took. It is called flunarizine and is good for migraines especially related to vestibular disorders. I didn't even get time to discuss my reasoning when he dismissed me with a simple 'it doesn't work'. Not to perhaps say - in my experience it doesn't work, but if you want to try etc. etc.! SO he wants me to go back and try this stuff called Topamax which I did take one tablet before and gave me odd feelings. He wants to start on a miniscule dose. So, will give it a try - again - and if no good then I will just ask my doctor to try the flunarizine regardless whether they agree or not. Anyway, good to read all your posts. Kathy glad Sydney has had a couple of good days - it will get better and better. Sue - lovely to hear you are feeling good at the moment. I did also mention about Verapamil to this guy as well - he really dismissed that too saying the only things that work for migraines is this Topamax and another drug called piztofen or something. Heard of that but you put on masses of weight - certainly don't need that!! B - let us know your Lyme results. Know what you mean to have a positive diagnosis for something because then you can get a treatment programme. Hope your daughter if feeling better - did she get a diagnosis? Sandie - I can't do the 'straight line' either. I drift from one side to the other!! Need Sharon's legless with labs - not lager t-shirt!! Sharon - loads of luck for your back to work programme. How is it going? I'm glad that I do a couple of afternoons a week. It is very easy going and no stress. Gets me out of the house!!! Anyway, will let you know if I turn into a green eyed monster when I start this new migraine meds and if it has any effect on my dizzies! Anon - keep positive and strong. Love and hugs to all, Gloria xx |
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Brad, I will keep you posted. I have no idea when it will come back! I will ask around about a Lyme Dr. My daughter has some gastro issues that have been really awful for her and she has had a lot of sickness and pain. She is doing much better on some new meds right now and so far so good! You have good info and I will follow up. I'm so glad you are good. Gloria, I worked in a home and some of the residents there took Topamax and didn't seem to suffer too many consequences, it seems to have multiple uses. I do know a side effect does happen to be weight gain. Damn that Dr. I am so sick of drs and their arrogant BS! They work for us! I'm sorry had to be that way. I hope the med works for you. You've been one busy lady. Hope it hasn't been too much. It's good to be busy, don't ya think? I like it as I have less time to obsess. =) I did a shift today without my daughter and did it! It was pretty good all in all. Things have been pretty good all in all. I have gone back on my steroid nose spray for my dang allergies. I was leery too, but don't know why. It didn't cause this stuff as I have been taking it off and on for 15 years! I get so silly sometimes about meds! I want to breath at night. I know some others have been suffering with allergies too! I have always had them, but they get worse as I get older. Well, enough from me! I hope everyone has a great day!! As usual best of health to everyone!!! B |
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hi all Not been on for a while as been a busy few weeks with Easter and Royal weddings bank hols. I haven't done loads but just plodding on. Not lots to report symptom wise. Still same old funny feeling in my head, intermittent aches in neck and drowsiness. Overall coping ok but still not normal (yet!) Donna I saw your earlier post and really feel for you. What with a job and 2 children to look after you are probably pushing yourself to the limit. If there is anyway you can cut back and do less I think this may help relieve your symptoms a bit. I know if I do more than the basics I feel more tired, more dizzy and the anxiety feelings can re-surface so I think it is about keeping active but not doing too much. Hope you feel a bit better soon. B you always sound positive even though you seem to have a lot on your plate. Hoping you and your daughter are seeing improvements. Gloria shame your appt didn't go particularly well. I have given up now with doctors, unless I go worse (fingers crossed I wont). Like sandie, I am going it alone now and hoping that time will be my healer. Glad you are enjoying your job though that is definitely a sign of improvement! Everyone else Claire, Wendy, Sharon and all the other unfortunate labbies, hope you are keeping your chins up and feeling a bit better now summer is approaching xxx |
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Hi all, I'm new here,and I'm feeling quite terrified. To make this brief I was diagnosed with an inner ear issue at the age of 19 and I'm not sure what it was. I was dizzy and getting sick. They put me on meclizine and said it would pass, and it did. Now I'm 43, and in the past year I've began to have problems again that is stealing my life :( I have constant ringing in my ears, pressure, pops, fullness, and sometimes, sharp stabbing like pains that are like lightening bolts. Kind of electrical type pains. I wake up and when I stand up, I'm very light headed, and the room dims, then I feel like the world is falling away from me and I'm dying. Sometimes I feel a spinning sensation inside my ears, then my heart jumps. The back of my neck hurts every day. It's tense, and constantly there. Sometimes, the pain lightly runs from back of my neck into behind my ears. When I swallow, my ears pop or crackle sometimes. My neck got so bad last year, and that was actually one of the first symptoms of this, along with ear ringing. I went to the dr who said I had "spasmodic torticollis". But, I don't think I have that because the symptoms of this do not match what is going on with me over time. I just have a stiff and painful neck. But now this thing seems to be developing into pain that reaches around my ribs and goes into my chest area when I move around. The other day I thought I was having a heart attack, cause I was hit with sharp chest pains that would not go away. My husband took me to the ER and they ran a bunch of tests and found nothing wrong with me. The doctor pushed around on my chest wall, and the pain was so great I cried. She said I had "costochondritis". I also have anxiety attacks with this, sometimes for days at a time, all day long. I can't really take meclizine, because it can make my anxiety worse. It depends. I feel my life slipping away. I don't drive anymore. I can't really go shopping for too long, because I feel I'm going to fall over, and then I can't breathe. Then terror sets in. I keep going and trying to push myself to keep up and do things, but the things I used to do are getting less and less. I don't even go for walks much the way I used to in the woods because I get panicked, and I can't breathe. I hyperventilate, and I feel so dizzy. This has been going on for two years for me, but the past six months seems to have been the worst ever. I just needed a place to talk about this. My husband totally understands, but no one else in his family does. I stopped going to some family get togethers because when I get on a highway in a car, panic sets in and I feel every movement. When cars go by me, I feel they are going to slam into us. A long time ago, I used to be on xanax for panic attacks, but then my doctor forced me to go off it. I asked her if I could go back on it, because I think it would help me and she said no. I don't want to go on an antidepressant because in the past, I was tried on many different ones for anxiety and they made me worse. Thank you for hearing me. I just feel like I'm never going to be me again. |
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Stephanie, First of all, I'm sorry you are suffering so much. No one should have to feel such terror. Secondly, get a new dr. You should be able to have some sort of relief and it sounds like your drs are not trying to achieve that for you. Drs are not well educated in this area. You should not live your life in a panic every minute of everyday. You must be exhausted. I'm very glad your husband is supportive. Lastly, I'm glad you found this site. These are some of the best people you will ever know. They can help you in different ways as they have all experienced this to varying degrees. I wish you well and I encourage you to come back often. B |
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Stephanie..........Hello and welcome to the site, you will get lots of support on here. You sound absolutely terrified by your symptoms and the effect they are having on your life. Like the majority of us on this site you have met with little support or understanding from Doctors. When I read through your post it reminded me very much of my daughter just over a year ago. She had symptoms like yours to the point that she was admitted to hospital as she became unable to walk unaided, drive, care for her son, do her job or cope with any aspect of her life and she had a range of persistant and slowly worsening symptoms. We had been backwards and forwards to the Doctors who always gave a different diagnosis but were never able to cure the awful,terrifying symptoms. My daughter transformed from a capable, confident, happy working mum to a frightened, poorly shadow of her former self with many of the symptoms you describe. She became too frightened to even go shopping because she was constantly dizzy, had awful chest pains etc. She would phone me and yell down the phone 'mum I,m going to die because I feel so ill and the Doctors can't find out what's wrong'. At the point she was admitted to hospital she was convinced she had a brain tumour as the pain in her neck, ears, head were so bad and she couldn't walk at all by this point, her vision was blurry, she was constantly dizzy and had a range of seriously scarey symptoms. The whole experience was terrifying for all concerned. In desparation I did an internet search of her symptoms and it took me through to an American site called 'anxietycentre.com' and there before me were all of my daughter's symptoms, I couldn't believe what I was reading, I printed off the pages and took them to my daughter. We then sat and wrote a list of issues that had accurred recently in her life which could have given rise to this stress. We then told the medical staff what we thought and they instantly put my daughter on medication and signed her off work long term. My daughter remained unconvinced, at this point, that her symptoms were not an indication of a serious medical illness and it took some months on medication, having counselling and rest for the symptoms to begin to fade. I now have my old daughter back, she is so much better but still being monitored and on meds. Stephanie, I am not a Doctor, but your symptoms are remarkably like my daughters were and I would urge you to have a look at 'anxietycentre.com' and read the info. Although some of your symptoms may well be what the Docs have diagnosed, I wonder to what extent a level of anxiety has gripped you because of this. Also if you had Labs when you were 19 the memory of it and panic that it may have returned would be enough to raise anyones anxiety levels. There isn't one person on this site who hasn't suffered with major fear and anxiety because of the Labs, it is a terrifying illness. Please, please look at the anxiety site, I know for my daughter it was hard to see how her serious and life altering symptoms could be put down to anything other than a terminal illness but she was wrong, she is actually a very healthy and fit 26 year old. I hope I haven't sounded unsympathetic or bullying but your symptoms are just the same and I would never want anyone to go through the hell my daughter did when there is a solution. Best wishes to you and keep posting, you will get lots of support on here. Sharon (uk)
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Hi Stephanie: Welcome. Sorry to hear you are well. This is a good site. Where are you from? I do suggest you seriously consider Lyme Disease given your symptoms of dizziness, fullness, anxiety, and neck issues. I had all of those and was told it was Labyrinthitis(I think I had it.) But the root of my Labs was lyme disease. FYI..Lyme is controversial and most doctors / tests can't properly diagnose it. YOu have to get special lyme doctors who know better tests. You can get help by going to flash.lymenet.org and posting your story in Medical questions. Also checkout ILADS.org and find an ILADS trained doctor. May as well rule out lyme. If an ILADS LLMD (Lyme Literate MD) says it's not lyme you can then have piece of mind and go on to focus on getting better from a true inner ear condition. FYI...you may want to check out a 2009 Documentary FIlm on Lyme Disease called "Under Our Skin" (www.underourskin.com) now available on Demand and via Netflix. FYI...after a year of treatment, all of the symptoms you describe are gone for me, except for some very mild tinnitus. But the neck pain, anxiety, dizziness, are all gone. |
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One word of comment about anxietycentre.com Been there..done that. Before my lyme diagnosis, I was told the horrible anxiety I was experiencing along with my labs symptoms was the root of my problems. i.e. that my anxiety was causing the physical symptoms I was experiencing. When I finally tested positive for lyme (after originally having a negative test) I learned that anxiety is a common SYMPTOM of the infection of lyme and bartonella (a common co-infection.) My brain MRI was relatively unremarkable, but my brain SPECT scan, which shows function (MRI shows stucture) was abnormal with massive areas of inflammation and low blood flow due to the infection. So..further proof. Anyway...after getting proper treatment from an LLMD all of those awful symptoms are one. I went to the forms on anxietycentre.com and pleaded with the folks to please consider a lyme infection as the root of their anxiety / symptoms and was run out of town on a rail. People got very angry and said "how dare you suggest I'm have an infetion...I have anxiety." Sigh..you can lead a horse to water. Yes..I realize not everything is lyme. But when you learn about the disease you will see it mimicks many other illnesses. In my mind, you should always rule out lyme & co in any chronic illness. |
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Brad, My Lyme test was negative. They sent me a tiny card in the mail stating so. I must admit, I am sad. I wanted to be better. Oh well. B |
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Thank you so much for your helpful responses. I sure do appreciate them. It is very possible that this is anxiety related, but it is hard to believe that all of these symptoms could be just that. I wonder at times, if my inner ears are creating the problems. Could anxiety cause inner ear problems, rather than inner ears causing the problems? I am almost 100 % certain this is not Lymes. I have never gone camping, and I'm not an outdoorsy type. I guess anything is possible... I could have been bitten on my way to the car but I just don't know. Right now I have no insurance, and it's impossible to get doctors to agree to do anything for me. At the moment I'm stuck. I live in a remote area where I have access to this one clinic and so that imposes a problem, as I have not enough money to travel elsewhere. When my husband graduates with his bachelor's we will be moving back to civilization where I should have more options. One thing that I forgot to add is, my grandmother had inner ear problems. At times she was confined to bed with vertigo and vomiting. She had to take valium, and many other times she had to be hospitalized. She had this condition in the later part of her life that seemed to become progressively worse for her as she aged. Is it possible to inherit an inner ear condition? Thank you again for your help and comments. |
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Hey Brad........Totally agree with you on the Lyme thing, personally I think it's worth considering anything when you are really poorly and the Docs just keep insisting they can't find anything wrong. 25 Years ago I was very ill with what was eventually descovered to be an overactive and toxic thyroid, after being so ill,hospitalized etc I went on the 'thyroid campaign' just like you are now on the 'Lymes campaign'. At that time, in the UK, screening for thyroid was not routinely done (just like the Lyme situation isn't done now) and you really had to fight to get the test. Things, as far as Thyroid, have come a long way since then and believe me when I say to you Brad, I can totally understand why you are so passsionate about the Lyme testing. I'm glad the response you got from anxiety website hasn't detered you from your quest because even if you only help one person then it has been worth it. I believe that eventually Lymes screening will become as popular as thyroid screening now is. Fight the good fight Brad. Sharon |
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Hello Stephanie, I have been where you are with this rubbish and so have many of the others on this site. All I can say is the following; 1. Try and push your doc to check out any ear symptoms you are having. Inner ear problems are definately linked to inappropriate feelings of anxiety and panic. I had free floating anxiety for some time with Labs. Don't get brushed off with an anxiety / panic disorder diagnosis - it's the underlying problem / cause that needs to be identified and sorted. Get referred (by your Doc) to the specialists as soon as possible it's the only way to 'rule in' and 'rule out' what's wrong - and then access the appropriate treatment. This can be a lengthy and frustrating process - but the sooner you start the sooner (hopefully) you will find the answers and relief you are seeking. My neck / back / shoulders also ached terribly as my body tried to re-balance / compensate itself with labs - it still does at times. 2. Anxiety and panic (as bad as it feels) never killed anyone - it just feels horrible. I have had every symptom and sensation possible during my time with labs. To get me through this I used the Linden Method and it was a life saver for me and quickly got me on an even keel with that rubbish. Please check out the Linden Method website or a new anxiety site that's just started at www.anxietykeep.org where there's a link to download the Linden Method for free (under the tab 'free stuff'). Just don't keep researching anxiety and panic cures on the net - this just makes things worse - trust me on that !. If you e-mail me at fiskerton@yahoo.com I will send you some info to hopefully nip those panic attacks in the bud right here and now. 3. You will have seen Brad's e-mails regarding Lyme disease. Brad is right - Lyme can throw up all of the symptoms you mention and more. When you next visit your Doc throw this in the mix and see what he/she says. Push for testing if you have even an ounce of doubt about what's causing your symptoms. Always keep this on the radar. 4. Spend some time reading the back posts on this site - it will clue you up and possibly re-assure you at the same time. Hold On and Stay Strong - it will get better !!! Big HELLO to everyone else on sharp blue - hope the generally improving weather has you on the 'up' Stay Safe (as always) BINX1965 |
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Jemma - yes I pretty much do get on with it and 'go it alone'. Doctors are only there to frustrate you in my opinion lol! Just to prove it, I have a friend who I have known since I was young who has the same stuff as us but has been affected for nine long years. She has been back and forth to doctors etc etc. I stopped seeing my consultant (top man - supposed expert), about two years ago as I decided I was getting absolutely nowhere with him. He offered me grommits and injections in my ears to try and halt the dizziness. I already knew about this procedure and refused as I had read that it could make your symptoms worse or you could loose your hearing. Anyway, after all this time my friend (who sees the same consultant) had grommits inserted in Jan this year with a view to starting the injections in March. So she went to see him in March expecting to get injections but he wouldn't do it. Why? She does not know. I think maybe they were not working with others and they have stopped doing it, maybe not but it all seems very strange. So she is no further forward! Oh well! Stephanie - welcome to you. I have had those 'lightning bolt' feelings in my head too - jeez, they make you feel like you are dying, they are so terrifying. Stephanie all your symptoms are typical of labs and anxiety is also a SYMPTOM of labs. My grandmother (on my dad's side) had inner ear problems too and was always losing her balance. I also had one aunt, and two cousins on my dad's side who have had the same problems, the two cousins are actually sisters. Labs started for me after I had an upper respiratory tract infection which is typical of the condition but I do believe that for me it could have been always there. I had my adenoids removed as a child and certain things point to balance problems - I could never go on a swing, roundabout or slide as I would feel so ill. I have never ridden a bike and I am not good with heights. Makes me wonder! I have always been funny with balance and then I got this! Stephanie I am so sorry that you are suffering again but you must get out for those walks and fight this monster. Take care Sandie xx |
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I thought I was getting totally better, but nope. Been having a slow relapse all week. It isn't as bad as before, but it intensifies my anxiety and steals away my hope. I really just want to sit and cry. I felt like I would fall at Costco. We road our bikes to the market and back all fine, but I was not fully right. I'm pissed off!! I need so desperately to get back to work and my life and I feel like it will NEVER happen. I know I've only been at this for seven months(longer if you count the year of dizzy spells before) and that is nothing compared to some of you. This is one of the only times I wish I had a husband. Someone to pick up the slack and help. It is hard to do everything from changing the oil in the car to cooking dinner every night. Especially when you feel so wrong and borderline miserable. Some relief would be nice. Some research Doctor needs to take notice and figure this horrible illness out, NOW!! I'm sorry to be so negative. Thank you for letting me vent. Like you have a choice! =) It may be the stress of all the crazy things happening in our whole family that finally caught up with me. Who knows. Could be these stupid allergies that are slowly taking over my life more and more each year. I don't know. Anyway, enough from me. I am not being positive at all. I hope everyone else is well and sorry once again! Good health to all! B |
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Just wanted to say something about the lighting bolt pain, not sure if it is the same. I get it in my jaw very close to my ear and was told by my dentist that it is a nerve in the jaw. He said some people have the pain so bad and frequently they have to sever the nerve to get some relief. I have them very infrequently, but when they happen, even though it is like 2 seconds, the pain is so intense it almost drops me and I'm afraid for a few minutes. There is a soreness where it happened for awhile. I find massaging the jaw muscle is helpful. I have had up to 3 at one time and man oh man it is awful. I have had them as long as I can remember. Just thought I'd share. B |
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Hi Everyone I just dont think this relapse is ever going to end Im so much worse than I was I keep crying and feel like throwing myself under a bus to make it go away! I cant cope with feeling like this nad its so unfair and no one understands. WHY did I have to get this and is it going to get worse the older I get I cant cope with that thought its too much for me. What Can I do to make it go away!! I dont believe in its MAV VN etc as It keeps coming back and getting worse and I dont know what to do wish someone could tell me what to do :'( |
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Hi Everyone, Well it has been TWO years since the first symptoms of Labs hit me. I made it! I MADE IT!!!!!!!!!!!!!!! Two years of the hardest battle of my life to date! Stephanie, welcome to this wonderful blog where you will be heard, understood and calmed. The fear you are feeling right now is completely normal. I too had a neck injury. After much research and physical therapy, I learned that there is a nerve called the greater occiputal nerve. It runs from the bottom of your spine, up into your neck and branches out on either side of your head, behind your ears. Your vestibular nerve is in this branching. If anything is pushing on these nerves, you will for sure feel it. Anxiety, dizziness, moving sensations. Where do you live? If in the US get into physical therapy with a Vestibular Rehab Therapist. AKA VRT physical therapist asap! Insist on it from your GP or orthopedic doctor. Take your health into your own hands now. The doctors will not understand and they are all too happy to write prescriptions. That said, the xanax will do wonders for you. It slows your vestibular system down and if you have a good psychiatrist prescribe it, you will have no problems tapering off it when need be. I started on Zoloft two years ago and 2 mgs of Xanax every six hours during the worst of my labs. I am not on Xanax anymore and it was no problem coming off it. The Zoloft also helped greatly with the anxiety I felt. It also helps heal and restore your nerve damage, by allowing serotonin to flow back to normal amounts. Thus helping the nerve heal. I was told by my ENT it takes one year for a nerve to fully heal from any damage. Try hard to battle this. You will be ok. I am fully recovered. I have the occasional day when I have a swirly head and I feel exhausted. I am prone to ear infections now. I do get crackling and full ears. I know now to go asap to my GP and insist on an antibiotic. The ear fullness subsides and then I'm fine. I usually have a day or two each month around the time of my period. Stephanie, you are in the worst of it now. It will get better and you will get control of it. Keep the faith!!! Gloria, how are you? Jemma, Brad, Sandie, Claire! We are all hanging in here! Summer is fast approaching and I am so looking forward to the beach. Keep the faith everyone!! Melissa |
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Hi to all sufferers on here. Stephanie, Melissa is so right. At the moment it seems like you will never recover, this is the hardest part right now and you will get through it. I am now a year and a half into this awful illness. It does get easier. I still suffer like many long termers on here with ear fullness, weird sensations in my head, neck stiffness, unbalance and jelly legs and extreme tierdness. having said that i am now coping better, whether because we are used to the symptoms and not so scared of them now or whether they are improving month by month or a combination of them both. The anxiety you are feeling now is very much a part of it at the begining, it is so scary for you, but that will gradually ease if you try not to be scared of the symptoms and to cope with them, and think hey i'm not gona die from this thing! Hard i know but you will get there. My anxiety with this is much less now, sometimes new situations will bring it on, but deep breaths and all that do help. If you can manage a daily walk this really does help. I hope you get support from your family and friends, this sure does test friendship levels. There are many on here who all give really good advice and completely understand everything you are going through. x Melissa, good to hear you are better. It does give us hope. I am praying that when i get to the 2 yr mark i will be 100% as alot of people seem to say 2 years (fingers crossed). Interesting you saying you had a neck injury. About 3 months before i developed labs i hurt my neck, developed really bad headaches (something i never suffered with), then had a lumbar puncture done at the hospital a week later the vertigo started and then was diagnosed with labs. It seems everyone started with a different trigger. Weird. Keep on the up! x B, so sorry you are down at the moment. You have alot to deal with. Your daughter has been poorly and you have had other family stuff to deal with all on your own. You be proud of yourself girl. many would have crumbled by now, but i know from your blogs you are strong. I must admit last week was a downer for me, (monthly time). I really do feel like you that i have lost my old life and so want it back. I miss that feeling of being busy and feeling tired from working rather than tiered from all the symptoms of labs. We will get there, we just gotta hang on in there. You say miss not having a husband, my husband seems to have lost interest in anything i say about labs now, not as much support as i would want, my oldest daughter really tries to understand and that helps. Hope your daughter is improving. Wishing you a big hug accross the sea to you, keep smiling B. X To everyone else, Binx and Sharon glad to hear you two are improving. All my love and best wishes to old timers on here, Gloria, Claire, Jemma, Sue, Shirley, Ashley and any other labbies on here best of health. Lots of Love Wendy XXX |
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Hi everyone.....do hope that your day is fairly ok and if not....take heed things will improve, i have just seen a councellor about deep breathing, i was so axious that i was hyperventilating, i have not driven on my own for months....my friend has just brought me home from work and I made myself go out in the car, put a cd on very loud and drove about 2 miles up the road and back! great achievment for me! When I started to feel a bit shakey i instantly started the deep breathing in for 3 and out for 11 and i also started to sing along to the cd.......and I made it home, i will hopefully do the same again tomorrow...just thought this might be of encouragement as I really was beginning to wonder if I would drive on my own ever again! We will get there! xxlove to you all Gill |
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Donna, please don't feel so bad. We all cry over this crap and it does make you feel so bad but try and be positive. How long have you had this Donna and how old are you? You say it keeps coming back - are you sure it is worse? I have had this for six years and I keep relapsing but whilst my relapses are really bad they are never as bad as that first time I was struck with it. I have to keep reminding myself that although it keeps coming back it is not as bad even though it is still very hard to deal with. Donna any worries you have please post them here and we will all do our best to help you. You are right that no-one understands - it's because they have never been there so they haven't got a clue what it's like. Oh yes they can feel dizzy when they come off a roller coaster for a few minutes but try living with that 24/7 and all the other symptoms that this condition brings! Ignore them - it's you that matters. Take care Sandie x |
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Hi Everyone... Back again :( I had suffered from labs back in 2005 and had it after a very bad bout with a Viral upper respiratory. The labs hit about 4 weeks after the viral infection passed. The labs lasted about 6 months and then things went back to normal. I do not have labs as of now, but just getting over another upper respiratory and sooooo fearful the labs will return after 6 years of being labs free. For 6 years I was pretty healthy, so never worried, but now that I've been sick I'm scared. Is it common for the labs to return everytime after a cold of viral infection? Any input would be greatly appreciated Laurie |
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Sandie, your comments are interesting about always having problems with your inner ears, and that it runs in your family. I know that I myself have always had balance problems, and I also can't ride a bike or a rollercoaster, and get terribly sick with heights and with any kind of travel. I can't even watch many contemporary movies because of the camera movement. I keep wondering why my doctor thought I have Meniere's even though I only had one bad attack (5 months ago), but perhaps he feels that people who don't get over it right away and keep having the fullness in the ear and the dizziness for months on end probably have Meniere's. I know Meniere's is supposed to run in families, so maybe some of us are hit with this because have already have a weakness in that area? |
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Laurie, I have heard that it is more rare to have it return though it does on occasion. Don't stress yourself out more by worrying as it can make it worse. Just think positive. Good luck! Wendy, I only want a husband to do the heavy work and help pay the bills!! I am feeling better and so is my daughter. It is a relief. I know there is more to come, but I always hope I am done. How are things for you? Still stressful? I'm sorry. Thank you for your kind words. Means a lot. Have a great week everyone!! B |
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Hi Sandie what I meant was its like I get hit in 10 weeks cycles where it feels loads worse.It has never gone away but I get relapses if you like. It also hasnt ever been as bad as that first month and for that im grateful but I get bad bad days though! Its weird i keep waking in the night with my right ear muffled and a big pugged and the T gets quite loud . I keep thinking it must be menieres but I dont get the knock out vertigo attacks what do you think about that? I dont know what to think part of me hopes it menieres . Someone told me to go on antidepressents as Ive been crying a lot lately is that a good Idea? Ive had this 19months and Im 24 Sorry about the last post I was a bit hysterical that day lol symptoms were pretty bad and I cried all day xx |
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Hi Anna, I don't really know why your doctor would say you had Menieres. I thought that Menieres would give loss of hearing as well,which gets worse over time - do you have any deafness? Whilst I fit into the part of Menieres with the severe vertigo attacks which is totally disabling, I don't have any deafness apart from now and again I get this 'muffled' feeling but I can still hear. I think this is why I was diagnosed with Vestibular Neuritis because I never had any hearing problems and have also had a lot of balance problems over the years Like you I can also still have problems with watching all these fast camera movements - no 3D for me either! My son has a game called 'doodle jump' on his ipod and I have been having a go on that. It is a platform game and the little man shoots up the platforms at certain points - even that sends me dizzy. What a life - lol! Take care Sandie x |
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Hi all, Just popped in to say I'm still around!! Approaching my 2 years in about 4 weeks. Like Jemma I feel OK, get on with my life and do pretty much everything (still haven't thought about flying yet though!). My head still feels odd, muscles ache (that could be an age thing though!) and get very tired still. However, not surprising when I dash around entertaining all my family and friends as I have of late - so my own fault!! Waiting to hear from my doctor if she has received the directions for this new medication that my arrogant neurologist suggested. Lovely to hear from all my Sharp Blue pals (Wendy, Sandie, Jemma, B, Binx, Melissa, Sharon, Donna) and welcome to all newbies. DO have faith that this is a nightmare to deal with, but does get better and you do lead a normal life. To be honest I think when you have something that drags on you sort of get used to it - dare I say - and build the blips into your life. The balance of having awful days and nights does eventually turn tide to having reasonable and then good days compared to bad. Whatever, you must never never give in, even though that feels the easiest thing to do sometimes. Equally, always be positive that your experience of labs may never be as long as some of us on here. My heart goes out to you all. I'm still doing my 2 days a week at the hairdressers and I love it. It's not difficult, but that is all I can cope with. It is great to be social and have other things to think about and do with the knowledge that everyone understands if I have an off day, I go home no questions asked. That is great as no pressure. I also get my hair done for free - (hubby v. pleased!!!) Binx - any news on the job front for you? Claire - if you are looking in - how was the holiday and how did you get on with the flying? Take care all, Love and hugs, Gloria xx |
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Donna, I am so sorry that you are so young and have to be dealing with all this crap. I have a daughter who is 23 and would hate for her to suffer with this condition for a single day. I also get the cycles that you describe - for me it has never gone away either but I can go for a while with lesser symptoms and then it hits me again. Saying that, the last year has been a lot better for me and whilst I am not free of it by a long chalk I haven't had a prolonged disabling attack like I used to get. Donna, you have gone past the normal 6 week mark with this, (in any case that's what the docs say is normal - we know otherwise), but I have heard a lot of people recovering after the two year mark (Gloria seems a lot better now). I'll keep my fingers crossed that you are one of these people! Keep hold of the fact that it has never been as bad as that first time and start to think positively about what you can do, not what you can't do. Do you work? As for the muffled ears you are experiencing, I get that too and I get Tinnitis but not loudly and it is sporadic. Sometimes it will increase but only for a minute or so. As for a diagnosis of Menieres do you have any of the other symptoms of that? I have always thought Menieres was attacks of vertigo which lasted at most a couple of days. For me, my dizziness is always there with the disabling attacks where everything gets really bad i.e. vertigo, dizziness, balance, they can last for nine months (longest). Please try and keep away from the anti depressents - I know lots of people have been helped with them but if you can manage without them so much the better. The brain is supposed to be left to try and compensate for the damage done to the ears and it can't do this if it is being numbed by pills! Of course, having said that, I have never taken them and my brain still hasn't recovered! Donna, this is awful for you but you've got this far and things will get better. Keep telling yourself that you will beat this monster, don't be afraid of it and challenge it every day - get out for walks and give yourself a pat on the back when you accomplish things. This is what I have always done and it really does help. Take care Sandie xx |
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Thankyou Sandie I got this just after my 23rd Bday its hard my life feels like it just went *STOP* you know what I mean. I ffel old before my time and the 'boring' one . Saying that I know someone who got it at 19 which must be even worse I think. I do work part time and also look after my two boys aged 4 & 2 which I think is probably harder than work . Work can be a break sometimes its a quiet Job I have my own office and just get on with it and its only 2 days a week but I have to do it I need the money aswell. I know I cope probably better than a lot of other people with this as I work etc but I still suffer I just look so 'normal' lol I dont know about the Menieres disease its one of them wont know unless my hearing goes so I should know in time. I hope I do recover one day or maybe have longer good spells I could defo cope with that. Gloria it sounds like your doing great how long have you been on the dizzy journey now? THanks Sandie youve been a great help these boards get me through the bad days xx |
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Hi Sandie, No, I don't have hearing loss, although I did lose hearing in one ear for the first week or two, but then it came back. I think what i have is vestibular neuritis, and that's what my VRT therapist thinks too. Meantime, they've just called to tell me my MRI showed some abnormalities (although they said it wasn't a brain tumor) and the VRT therapist looked at the chart and said there were changes that were not normal for my age, but that since I was symptom-free there's nothing to worry about (yet). Now I'm worried I may have some early form of MS, although she did admit that she was not a neurologist, so didn't fully understand what she was looking at. Anyway, I'm sure they found nerve damage of some sort. But I'll post again after I meet with the neurologist and find out what it all means. Take care, Anna |
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Hello Gloria, No news on the job front yet. I don't officially finish for another 2 weeks, then following my end date I am not allowed to look for work for another 4 weeks - something to do with them clawing back my redundancy payment if I get or am offered another job so soon after leaving. That said, I have started looking round and putting a few ideas together. Symptom wise (5 months on) - the dizzies have gone. I have some tinni - mainly on waking which eases to nothing once I am up and around. I guess if i didn't go to bed i could avoid it completely. I am driving now with no problems - it was tough to get back into it but just pushed on through. For some strange reason i now feel more comfortable driving than walking. The worst symptom i have left is some mild free floating anxiety - which is worse on waking but (like the tinni) disappears during the day to nothing - like i said earlier, going to bed is the problem ! I just ignore any stupid symptoms and they go away - it's low level stuff and nothing i need medicating for although someone did say they had tried 5 HTP from the health shop and it worked wonderous miracles for mild anxiety. Has anyone tried it ? Glad to see some general up's on the board. For anyome new 'hold on' it does get better - although it can take time. Stick with the board - most here have been where you are now. Stay safe, BINX |
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Anna: If you had issues with your MRI, dizziness, tinnitus, balance issues, etc...I strongly encourage you to consider lyme disease. I had the same symptoms as you (couldn't watch movies, dizzy, tinnitus, etc), was told it could be Meniere's, and had an abnormal brain MRI. They then did a brain SPECT which showed massive inflammation in my brain and areas of low blood flow due to the infection. For many..the MRI is normal, but hte SPECT is still abnormal. You can check my links above for more info. Just remember that regular doctors and tests are terrible at diagnosing lyme. You need to find an LLMD. GO to the "Seeking a Doctor" section at flash.lymenet.org All of the symptoms you describe are gone with treatment. |
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UGH!!!!! Here we goooooo!!! After 6 years of Labs free its creeping back. I just got over a bad cold Virus which I havent been sick in over 6 years, and now not even a week over the cold and I'm dealing with the off balance feeling,spacey feeling, very anxious and my ears are still a little plugged from the cold. I'm sitting here in tears because I dont want to go through the pure torture of Labs again!!! This morning I was fine, yet this afternoon I'm not!!! I just dont understand.... My Doctor gave me Xanax and said it would help. Anyone know if this is true???? Is it the norm for labs to return after a viral cold and I mean after 6 years of being Labs free.....HELP!!!!! |
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Laurie, Xanax will help you very very much. Not only with the dizzy off balance feeling, but with the anxiety. Take it. It is the only thing that has really helped me. I know what people say about meds, but I don't know how much I agree. I have improved tremendously and have taken low dose meds the whole time. Try to stay calm. It could just be the cold hasn't passed yet and you are getting yourself worked up. Colds take forever and are very taxing!! Rest, take the meds and see what happens! I'll be thinking of you and wishing you the best!!! B |
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Hi Binx, I'm thrilled that you are feeling so much better! A friend of a friend that had this about 3 years ago, got over hers in about 6 months. When I was at the beginning of all this (just a few weeks in) I thought - 6 MONTHS!! I hope and pray that you just continue to do well. I've heard from my friend and she says her friend is doing great and has had no relapses. An order Binx - you are to do the same! As regard 5 HTP, I've heard it is very good. I wanted to try it, but can't because of my migraines and the migraine meds that I take. I have a couple of books by a guy called Earl Mindell (American). He is a brilliant authority on all supplements and herbs which is where I got my info on 5 HTP. It just might be the thing to help you kick the residue anxiety. Anyway, Binx - all the best and do keep us updated now and again with your lovely reports. Laurie - huge sympathies to you. That is what I'm afraid of now, that whilst I think I'm nearly out of this mess - will it relapse big time again. I do know that they say because it is a weak area, if you are run down and get a virus, then it can return but never as bad as the first time around. I don't know if that is any consolation at all. I know of others on here who take or have taken Xanax and it does help with the anxiety. Try and only take it though for as short a possible time as you can. Hopefully as soon as your cold is fully gone, so will all the horrible labs symptoms. Keep strong and positive - you will recover much quicker than before I'm sure. Donna - I've had this for 2 years now. You will find that symptoms peak and trough but do gradually fade. Someone else I've met who had this when she was 28 had it for about 3 years although she said she was loads better even at year 2 and fully recovered by mid year 3. It is now 10 years on - she is married with a family and doing great. Hold that thought! Keep the faith all - you will beat this! Love and hugs, Gloria xx |
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Donna You really are doing rather well you know! You are managing to work two days and you are looking after two small children. You should be proud of yourself. I know it's tough but at least you are not giving in! I was also the 'boring' one and have lost a few 'friends' over the years. You do tend to avoid situations - pubs/restaurants were an absolute nightmare for me, definitely no go and can still b e a problem at times. I worked for five years with this condtion and it was very tough, I never socialised with my colleagues after work it was always straight home and into bed to recover from my day. I had long periods of sick time as I just couldn't manage to work - my balance was terrible and I was so very dizzy. After my last relapse I decided I couldn't do it anymore and I have felt much better since I left work. Keep telling yourself that you are really doing well and I hope you feel better soon. Anna, keep us posted on your MRI findings, it will be very interesting to know what it is all about. You are very brave having the MRI done as there is no way you'd get me inside one of those things! I refused to have mine! Labyrinthitis and Vestibular Neuritis are very similar and most doctors don't distinguish between the two. I was diagnosed with VN too but have never had hearing loss. Brad - I do believe that most doctors are terrible at diagnosing anything these days lol! Take care everybody and Gloria I am so glad that you are feeling so much better these days. Sandie x PS off to see Pirates of the Caribbean tonight - that's something I could not do a couple of years ago! |
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Hi, I have been reading your posts, and this is honestly the BEST website for VL. Mine hit when I was four weeks post partum. Try taking care of a baby with VL. Not easy. We have had to have 24/7 care around the house to help me and the baby. Mine hit in the middle of the night. I had to go to the bathroom with the help of my husband because I couldn't walk and I vomited. I then laid on the ground in fetal position and could not move. The EMT's had to come pick me up off the ground and take me to the hospital. I spent 3 days there, 2 of which my eyes were shut the entire time because I couldn't look at anything or I thought I would vomit. I have never felt so bad in all of my life and couldn't even take care of my baby. I am now 8 weeks into this and I am still dizzy. I felt like I was slowly getting better at a rate of 10% then 20% then 30% and so on. Now I feel like it's at a 90.00000000001 and then 90.00000000002. It just stays the same and doesn't get better. I finally started driving again but with serious caution. I am able to change diapers and feed her, but is this ever REALLY going to go away?? Will I be able to run around a tennis court and play like I used to? Will I be able to ride a bicycle with my daughter one day? Will I be able to run around in the yard with her?? Or is daddy going to have to tell her, sorry honey mommy has the dizzie's still and can't do that or that, or that. It's extremely frustrating, depressing, and maddening. Has anyone on here fully recovered? running marathons? swimming without dizzies? playing tennis. HELP. I can't stand it anymore. I told my husband to just get an apartment down the road put me in it- make sure there is a room for the baby for when she can visit and he can go remarry someone else. That's how awful this thing is. I know many of you know how awful it is, but how do you keep your spirits up?? How do you look to the future? Do you see an end in sight?? Thanks for letting me vent. I am going to a neurotologist this week that specializes in inner ear/balance issues. I hope he can help me, b/c the ENT didn't. thanks again Megan |
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Hi Brad, That's interesting what you say about Lyme disease. I've looked up your earlier posts, and read more about it. I really hope that's not what I have, as it would be very expensive and difficult to look into (my insurance won't cover it), not to mention that the treatment could be very taxing. Although my MRI was abnormal, I have not really experienced any neurological problems, except for slight blurry thinking and some problems with speech. But I will see what the neurologist has to say when I meet with her. I also have not had tinnitus very much, except right after getting the labs (sudden onset labs, very severe). I do however have a terribly stiff neck and headaches at the back of my head. Other than that, my symptoms are classic labyrinthitis or vestibular neuritis. Although lyme ticks are not common in my part of the world, I live near a park where there is a lot of wildlife and go hiking often. I did notice a bite that looked like a tick bite with a rash that had spread out from it a few months ago, and was worried and tried to figure out what it could be, nut never considered that it might be a tick bite. (And of course, it may have been a spider bite, which I get sometimes around here). Before getting your post, I assumed that the only reason I could have an abnormal MRI would be scars from adult chicken pox. About a year after contracting chicken pox, I had chronic high fevers and what felt like brain swelling, and I still get those symptoms when I'm working or thinking too hard. Some speculate that labs is caused by a herpes virus (which chicken pox of course is), so I thought maybe the herpes/chicken pox had flared up and caused the labs. I also remember that I had a cold sore a couple of days before the labs hit. It was very disturbing what my VRT therapist said when she was hinting about my MRI: "There are changes that are not normal for your age...it's okay for now because you're not showing symptoms...you may have some problems later...you may have to be closely monitored...your neurologist will explain it all to you..." etc. It all sounded very much as if she thought I had MS. I looked it up, and brain sclerosis can definitely be caused be chicken pox. I would not rule out Lyme, but I'm not sure I have the classic symptoms as you did. The problem with going to a specialist is that from what I've read they often diagnose based on a history of symptoms, and they can always be wrong. Taking months of antibiotics would be awful if Lyme is not what I have. Then again, it would be very worth it if it is what I have. But Lyme doctors can make mistakes too. You're very lucky that you figured out what was making you sick, and were able to take care of it. |
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B and Gloria, Thank you soooo much for taking the time to comfort me. It truly helped like you wouldnt believe. I too read that it never comes back as bad as the first time, but I have to tell you with reading others posts I'm not sold on that thought. The first time I had Labs back in 2005 is when my Doctor put me on xanax after months of suffering. I felt soooo much better, but wasnt sure if it was the xanax or the labs finally calming down. My Dr did give me a script for the Xanax and I soooooo hope it helps : ( Thanks Again, Laurie |
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Laurie, Are you feeling better? I'm thinking about you. I'm terrified to get sick and have become good friends with Zicam. I have terrible allergies that keep me congested, but maybe a cold would be worse. I'm rooting for no labs for you!!!! Megan, I ride bikes with my daughter and have been for a month now. I am seven months in and doing pretty well. You sound like you have been hit way harder then I, but you will get better!!! It must be so stressful to have this and a new baby!! I suggest some ways to help your stress levels as I have found that stress makes it worse. Melissa, on here, has recovered and does happen to be a runner!! Binx is mostly recovered and did so pretty quickly. I do pretty good most days too!! You will get better! There is hope! I'm going to give tennis another try next weekend! My daughter and I used to play on Sundays so I'm going to do it again.. I sometimes feel like I will never get better, but I have and will continue to. You will too! Gloria, I'm glad you are doing better!! I wish I could find a job like that where people understand and I could work a couple hours each day. I'm so glad you have that. How is the house sale going? Are your headaches improving? I hope you are done. I will miss you on here if you are, but you deserve to never look back!!! Melissa, How cool you can say you are done!! Hooray! Best of luck to you! Wendy, Jemma, Claire, Binx, and everyone else: hope things are going wonderful and recovery is close. Good health to all! -B |
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Donna, If I hadn't taken an antidepressant to get thru labs, I'd surely be in the looney bin right now! So YES it does work. It DOES NOT get in the way of your brain compensation!!! An antidepressant is a medicine that ups your serotonin levels in your brain. Serotonin levels can be low in some people. When you have labyrinthitis, your vestibular nerve is affected. When you take an antidepressant, the serotonin increases. An increase in serotonin is beneficial for your vestibular nerve. I had NO side effects. You must get the prescription from a psychiatrist and NOT your GP! If you choose this route to help aide you in your recovery, try to titrate very slowly onto the medicine. Meaning do not take the maximum dose right away. Take the lowest dose possible and go up to a dose that eases the anxiety. These medicines are very beneficial and are NOT bad. As my doctor said, "If you were diabetic, would you not take insulin?" Same same! If you are anxious, why are you suffering? Laurie, yes, yes take the Xanax! Ok now I sound like a nutty pill pusher! LOL No really, Xanax slows your vestibular system. If you take it, you will feel less dizzy and certainly less anxious. It is very important to understand any medications you take for this. Make sure that you have a very good doctor. One that understands fully these medications. It is easy to titrate on and off of all antidepressants and anti anxiety meds. Ok I am not a doctor and don't claim to be one. I am two years a survivor of labs and I made it!!!! If I hadn't medicated myself, I would not have healed like I have. I ran 5 miles today in 40 minutes!!! Yeah!!! 2 years ago, I sat on this very couch and cried and was petrified. I MADE IT!!!! Keep on fighting, keep the faith, keep moving, never ever stop fighting to get healthy!!!! Melissa |
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Hi Anna: Good job doing research. Yes...you are correct that the LLMD is key to getting a poper diagnosis. A good LLMD will look at clinical tests, such as an IGENEX western blot which reports more lyme specific bands than a traditional western blot. They will use this data, along with other test data (your MRI), and symptoms and perhaps bite to diagnose lyme. So..if you have lyme specific bands present on the Western Blot (for example..Band 83/93..lyme DNA), and an abnormal MRI or SPECT, and symptoms..then you ahve it. There is a lot of misinformation out there about lyme and most docs don't know squat. So be careful. For me, as scary as lyme sounds, it was a good thing I got diagnosed properly as I'm nearing 100%. Had I hot been diagnosed, I'd likely still be very dizzy and likely disabled and unemployed. I second Melissa on the anti-depressants. I did Prozac for a few months when I really needed it..and it helped. Personally..I am not a fan of Benzo's (Valiam,Klonopin, etc.) I have met too many lymies who have had long term damage by them. Still..for others, like Melissa, they were ok. If you've had memory of a bite and rash, with dizziness and an abnormal MRI, stiff neck, etc,..I'd strongly think lyme. Tinnitus isn't a given. If you have doubts..post your story / ask advice at flash.lymenet.org |
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Melissa do you feel the anti -ds helped your dizziness? so glad you feel better x |
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Melissa and all others who recommended Xanax.... Thank You, Thank you and Thank you!!!! I am not one for pills, but I will say this..What a difference in 3 days!!! WOW I feel sooooo much better. Not 100% but certainly calmer and a lot less dizzier!!! Wish I had done this the first time around and to those who are really suffering, you really may want to consider the Xanax. They really make things alot easier in dealing with this terrible terrible illness!!! @ Melissa, LOL to the pill pushing comment :) Guess I am too because I would STRONGLY recommend the xanax as well!!! As my doctor said she would rather give me the pill than see me suffer needlessly. I'm a single Mom of 2 boys and just cant be down and sick. She said Yes it does slow things down, however doesnt stop the healing process, so would you rather be comfortable and slowly heal or really suffer and possibly heal quicker. I take the slower and comfortable hands down. Wooooohooooo to running 5 miles Melissa, Thats AWESOME!!!! I'm going to start out with long walks and work my way up to running again :) Thanks again :) Laurie |
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Hello everyone, Glad to see a few up's on the board again - whether 'on or off' the meds ! Superb. Here's one for you to go figure - or offer up your thoughts - as I am intrigued ! Anyone who has followed my posts will know that after 5 months I am just about clear of this thing. No dizzies, wobblies, unbalance, visual symptoms or anything similar - all gone. I can now drive unrestricted, go out anywhere and do all the usual stuff I did before labs. Cheers. All I am left with is the following: Tinnitus on waking - go to bed OK and wake with the left ear screeching and screaming away. It's obviously the lying down that kick starts it. This then dies down over the day to nothing - then I go to bed and 'hey presto' it's back when the sun rises next morning. Linked to the above - I am certain - is some minor free floating anxiety. The feelings are there on waking then disipate during the day at what seems to be the same rate as the tinnitus. By mid afternoon it's completely gone and I am 100% good. Strange or what ! Then I go to bed and the cycle starts again. It's not at a level to warrant medication - I killed the bad anxiety and post labs fears using the Linden Method - it's just annoying at best. Here's the twist. Take 2 aspirin and both the tinnitus and minor anxiety feelings disappear completely within half an hour. Mad or what ! Could the aspirin be thinning my blood - boosting the supply to the inner ear control gear or could it be an anti inflamatory effect doing something special. Who knows ! I guess the only solution now is to either take the aspirin or strap myself to the bedroom door (or a wall) and sleep in a fully upright position - that way I can be sure to avoid the onset of these undesireables and be certain of a complete and absolute recovery. I now forsee an interesting conversation with my 'quack' coming up - unless anyone has any thoughts (or educated guesses) in the meantime ! Stay safe everyone - thinking of you all !! BINX1965 P.S. Anyone know of a local bondage dungeon that's selling off old equipment cheap. I could now do with some of those wall hanging chains etc. I always knew that last 1% would be the most difficult - but rest assured I will try anything to achieve a full recovery ! |
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lol i took xanax for the first three months of having labs and they helped alot. just try not to take them everytime you feel bad because your body still needs to know whats going on, and you have a chance of becoming dependent on them. which is no bueno. also i start working in yellowstone on june 2nd, and leave for Oregon on the 29th to drive out there and work with my friends. hopefully the elevation doesnt mess with my ears, or head. hope everyone is doing good. ill keep up on the 411. have a happy SUMMER!!! :D |
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Hi, It's Megan again, I posted the other day, and I went to the Otology / Neurotology doctor and they had a machine there called the Epley Omniax. It's an odd thing that you climb into and get strapped in and it twists you upside down and around a few times with goggles on so that the physical therapist can see your eyeball and how it responds to different movement. They suspected that I had BPPV after my Labyrinthitis so being put into this machine was going to correct the problem. Well, I definitely feel a bit better. The dizzy's aren't fully gone, but it definitely helped out a ton. They said to give it a full week, and that 97% of cases recover from doing this machine. I don't know if any of you have a doctor near you that has a machine like this, or if any of you are suffering from the BPPV but it's worth a shot if you do. Just thought I would share with you in hopes to helping any of you out because I know how dreadful it is to feel like this. Hope you all are feeling better very soon. |
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Hi, Everybody, I am reporting that I officially HATE my ENT. They never remember who I am, they say things that are completely stupid and are kinda mean. I yelled at them. So He's fired. I am seeing a different doc and I know it's likely that nothing can be done, but at least maybe they can remember me or at least pretend to. So frustrating! |
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Hi all, I'm really smiling about all of the comments on here. I love to read your posts and it is so nice to see all of you that were stricken with this fight so hard to stay afloat! Donna, did I see a difference in my dizziness? Hmmm...I would say that I saw a difference in my attitude towards my dizziness. Does that make sense? I was not afraid of it anymore, I didn't have that circular thinking. I would lay on the couch and seriously believe that it HAD to be a tumor. How could I feel this bad and it was only an inner ear issue? I would think I was going to go on FOREVER with the dizziness and weird symptoms. Once I began on Zoloft and it took a month to kick in, I started to FIGHT labs. I stopped thinking negatively or anxiously and started to do something about it all. I too "fired" many a doctor. I found a great therapist, I got into VRT asap! I began running every night. I would walk and run two miles. Come home, drink chamomile tea and eat crackers. It sounds crazy, but keeping to a routine at that time helped. Go back and read my posts from the fall of 2009. I was desperate to find out how this happened and how to get rid of it. I now take boot camp twice a week, I run about 15 miles a week and I take a body sculpt once a week. My resting pulse is 50! It was 90 when I had labs! Labs changed my life for the good. Look at it as a pivital moment in your life. Laurie, Xanax was the only drug that helped me with the dizziness and anxiety that comes with dizziness. I agonized over taking it. I feared I would get addicted. I am not addicted and it was the best thing I took. Without it I couldn't have parented my two children. Your single and doing this. I'm married, it still was so hard!!! Good for you! Stay strong and you will be fine. B, ENT's are hard to find! As are GP's. They don't understand at all how you feel. Keep looking until you find one that listens to you. Keep the faith!!! Melissa |
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Melissa, You're so cool and I am so inspired by you. I have always stayed as active as possible, but some days, whoa. I love your comments! I love that you are so much better and there is hope. It is hard for me to think I may be sick for a year more, but I guess we do what we have to do and I have to see the improvements I've made already. It is there everyday and I still cannot work full-time, that is very hard for me, but I have made big steps forward. I am going to keep on keeping on. Without Xanax I wouldn't be ok. It has helped me so so much and just a low dose too. It is a great drug. I hate the hype that is given to meds. It all lies in the person using them as the person has all the power! I can't wait to be where you are! Thank you for your hope and encouragement. Made me tear up! There IS HOPE!!! B |
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B, Thank you so very much! I knew that when I healed I wanted to help others that feel so awful during labs. I'm so happy that I have helped you to feel better. Just keep fighting. Remember that it is not forever. You will heal. Take it into your own hands and you will feel so much better. :) Melissa |
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Hi Brad, Thanks again for your advice on Lyme. I think I will go get that IGENEX test done, just to be safe. And I'll see if the MRI test shows with anything that could be Lyme. I'll let you know what happens. I found this article on alternative treatments for Lyme which I thought you might find interesting: http://cassia.org/ One thing that struck me was that this person said that oxygen kills the Lyme, so that exercising a lot can actually kill the bacteria! Do you think that can be true? And good luck to everyone else who is struggling on this board. It's really saved my life to read all of your posts!! I had an especially bad head last night and thought I would go insane, but took valium and cuddled the warm purring cat and was able to finally calm down and drop off to sleep.It's so good to know that one is NOT insane, and that other people are brave and dealing with it, and are getting over it. People around you start to think you have a mental disorder when you don't get better over such a long period of time. Take care, Anna |
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Hello Everyone, I finally got my computer up again. Sydney is feeling better, knock on wood,but she is left with the eye symtoms, vision static, shadows, auras. I changed her doctor and saw a new neurologist. He was of course baffled as to why she has the vision things 24/7 which I expected. He is going to see if it settles down on its own before putting her on something for migraine. The reason for that is because she had 2 occular migraines in one week. I had someone suggest that I check out a book called Heal Your Headache by David Buchholz, that she may have migraine associated vertigo, and it really all matches. The book also says that a lot of people are misdiagnosed with labs, but I'm wondering if you can have both. Labs and mav? Has anyone checked this out. The problem with the migraine sites is the confusion, it's mainly diet but one site will say don't touch milk and another will say milk is ok. The more I try to find out the more confused I get. Sad to read some are having such an awful time right now, but at least they have found this site to keep in touch with others who have been through it and can find some comfort and keep in touch with some really caring and nice people, I know it helped me! The doctors-not so much. One thing is I learned that if you get the feeling on the first visit that the dr. isn't doing whats best for you...run, change right away! That one dr. that wanted to do a spinal tap on Sydney in her office,boy am I glad I didn't listen to her! Take care, Kathy |
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As to whether you can have labs and MAV, yes, you can. You could have gotten labs and the stress on your system could have kicked in a latent migraine tendency. So now your neurotransmitters are all off kilter, and your neurons are over-firing. Or you could have had a migraine that caused damage and inflammation somewhere in your vestibular system. But it could also be that it is just a migraine, especially if it is less chronic and more coming in attacks. With labs, it is there all the time, to more or less the same degree. As far as the diet is concerned, it is trial and error, and it is individual. Some people can deal with dairy with no problem, others cannot. In some people, tomatoes can cause migraines or eggs. You could try putting her on an elimination diet to see if there is any change for the better. But there are the universal forbidden foods in the migraine prevention that you definitely want to avoid like hard cheeses or anything that is high in tyramine. Buchholz has a good list. |
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Has anyone ever tried tubes? |
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Hi all, Great to read all your posts. Well, seems my good spell has run its course! Whilst not swirlyheaded as such but vision off, head heavy and feel not-grounded - if that makes sense. Neck aches and muscles aches back again - so am feeling a bit of an old crock this week. That said I am plodding on as usual but just don't feel too great. Saw my doctor who gave me the Topamax that the migraine specialist wanted me to try again. The side effects list is soooo scary! So I've made a decision to try the other tablets I have which I got a few months back from an other doctor which Ish, who was on here, took. They are called Sibelium/flunarizine. They are for migraine but also vestibular problems. I took the first one last night - slept really well and woke this morning feeling a bit tired. That could have been down to my 'rebellious' hike I did yesterday though! Not wanting to give in to feeling bad, I thought a good hike and loads of fresh air would do me good. So hubby and I went out into the country, walked a few hills. So could be the cause! Otherwise haven't had any side effects yet - no two heads this morning. That might have been good though - at least I could chop this old troublesome one off though LOL!!!! Good to hear from you all - Melissa - you are our success story - Kathy - so glad Sydney is feeling better. B - know what you mean about ENTs. Every time I see a new person. Don't think I've ever got to see the same person twice and then have to relate all my story over again!!!! Binx - interesting theory!!!!!!!! Tower of London still has such chains!!!!! Joking aside though - my mornings are my most challenging and get better throughout the day. whilst it's good to get to bed and rest, the thought of waking up and feeling so groggy is not so good. You've cheered me up again though - such a vision will be with me from now on! Sean - way to go - have fun. I'm sure you'll be fine and Laurie so pleased you are feeling better too. Keeping Melissa's faith - onwards and upwards. Love and hugs, Gloria xx |
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Hi all, Thank you Tina for that information, I got the book and am reading it now. B, what are tubes? I am afraid to even give Sydney a new vitamin for fear it might cause a symptom. Gloria, sorry to hear your not feeling well this week. Sydney did the same thing, went on a bike ride through some hilly area this week, actually walked her bike up and down some hills and the next day she didn't feel good at all.Although she is feeling better slowly but surely, knock on wood, she still has the vision thing everyday, which scares me, and the anxiety comes in waves. Everyday I still have the intense fear of her telling me she doesn't feel good, cause right away when I hear those words, I start feeling sick and panicky. I think its because I know I'm on my own as the doctors have been so disappointing. Take care, Kathy |
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Hi everyone, This is my first time on here. I have had many of the same symptoms as all of you, for the last 3mos. Dizzy, off balance ringing in my right ear 24/7. I just started VRT last week and was very dizzy after my first session and got very depressed. But, after reading many of your blogs I feel like there might be hope. I can't believe how many people have this problem. It's very depressing because I can't work and do a lot of the things I use to do. I go back tomorrow for another VRT session, hopefully, this one goes better. I hope we all find the help we need soon.
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Kathy, I think drs are horrible because they have no idea what they are doing when it comes to this. My Ent was impatient, never ever remembered me or anything about me, and wouldn't even pretend. I hope that Sydney bounces out of this very soon. I'm so glad she is improving. I over do it a lot, but I find if I lay around too much I don't feel very good either. She deserves to be completely healthy. I know this is hard for you too. Tubes are drains they put in your ears to run off fluid. Kids get them a lot. I have read they can help this and my mom's boss just got them and it has relieved her dizziness significantly. I think I want them as I always have crackly sloshy fluid in my ear. I'm thinking of your girl and hoping she'll wake up well. I imagine it is scary for her to have to have those vision symptoms. May your week be great! Candie, Sorry you are here, but you are in the right place! It won't heal you, but it will settle your nerves! I hope your next appt goes great and you get on the mend soon! Keep us posted! Gloria, dang these ups and downs!! I felt not right(more then normal) for a couple days with a really disconnected feeling. How are the meds working? Do they have a period where they have to build up or do they work straight away? I hope your bad spell is short lived! I hope you enjoyed your country hike! We go out in the mountains often and I just love it! Laurie, I hope you are still doing ok and that things have improved! Sean, be careful and have a great time in Yellowstone! Don't go walking around in the dark! Binx, good to hear you are holing strong in the 90%s area! Hope it is 100% in no time. Megan, I hope you are feeling better and making progress. New dr today. We'll see how it goes. Probably nowhere, but I'm gonna try! Thinking of everyone and hoping the best!! B |
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LOVE MY NEW DOCTOR! He looked in my ears and said the light is muffled and doesn't reflect back in the cone shape that it should, therefore, I have a eustation(sp?) tube disorder! I started crying at the end of the appt as no one has taken that kind of time with me. He acted like he cared and he address a couple other issues and said we will start with one thing and move to another to fix the issues. I am now using a medicated nose rinse called Wilson's Solution. It is saline with an anti-biotic! I don't know if this is the cure all, but it is a step in some direction. Funny how the ENT didn't notice this!! He was a wasted of my time and money! I so hope it works, but it is nice to be heard and not dismissed. Thought I'd share! There really are a few caring, decent Drs out there!! B=) B |
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B, So glad to hear you found a dr. who might be able to help you. Sounds like you might be on the right track. My 2nd. therapy session went better. My therapist took it a lot easier on me this time. Hopefully, soon I will be getting some good results. Good luck with your new doctor and keep us posted how things go. |
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Hi all, Thanks Kathy and B for your good wishes. It does get you down after what is now a long time with this mess. Even though I have had not too bad periods where I've been on an even keel although not 100%, but then back down that slippery snake to start all over is a drain the old patience levels! Drugs not doing anything so I think I'll stop the lot and go for 'au naturel'!!!! I have gone back to doing my VRT exercises and dare I say it seem to help. So maybe being all cocky and thinking I don't need to do them was bad thinking. So, will continue as before - until I get bored and fed up doing them again - then am OK - then, like now, relapse and back to doing them again. Oh isn't life fun - NOT!! B- am thrilled you have found a sympathetic and proactive doctor. My doctor is very sweet, but she can't seem to make any decision for herself and always has to refer to a specialist which by the time the appointment comes, takes weeks and weeks. I would love to go to a doctor who can actually deal with the issues themselves. Candie - welcome. This is a challenge to deal with, but you will get through it and this site is everyones' saviour. We all have experienced same or similar symptoms and its great we all understand each other and can vent off (like I've just done). This site in itself is great therapy. Hope everyone else is having better times. Love and hugs, Gloria xx |
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Hi, Gloria it is nice to have a site to vent on as everyone on here can understand. I know it's hard for a lot of people to understand if they have not experienced this themselves. I am very fortunate that my husband and children are very understanding and sympathetic. My therapist said today she thinks alot of my vertigo is caused by a pinched nerve in my neck. She started therapy on my neck today and said she is going to concentrate on that for awhile. Gloria, I'm sorry to hear you had a setback. That can be very frustrating. Hopefully, your VRT exercises help you feel better soon. Thinking of everyone and hoping they are having a good day. |
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Hello All Well I made it!!!!!! I flew to Portugal (2hrs 40mins) I was absolutely fine, even though leading up to it I had had a little relapse & was rather worried. I wore ear plugs and used stugeron going out but no pills coming back.In fact the flight home was better than the flight out! I now feel I can do anything and this condition wont stop me doing a thing. It still liingers around & pops up when Im least expecting it like on holiday 2 days before leaving, the vertigo/room spinning on head turning resurfaced, havent had that for at least 6 months! Im still not sure this will ever actually go (17 months now) but I have learnt how to cope with it & get on with each day & on the rare days/weeks I feel 90% good I will make the most of. So to all of you fellow long term sufferers (Gloria, Jemma Shirley) and any others just do it all, Gloria get on a plane try it just a short flight try it out go on be a devil :) Anyway just wanted to update you all on that & give you some hope of living a 'normal' life again. Im not 'over it' by any means but just 'getting on with it' Love to you all Claire xx |
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Hi Everyone, Has anyone tried peppermint? I read about it- supposed to be good for a lot of things including naseau, headaches, asthma, it even mentioned dizziness. Got Sydney some peppermint tea, so am going to try it and see. Oh and it mentioned anxiety on one of the sites. It's a plus cause she likes the taste, she usually doesn't like tea. We'll see.... Hope everyone is having a good day. Take care, Kathy |
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Well done Claire good on you ! x |
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Dear All, Hello to everyone old and new on the site. I havn't posted for a while but have been looking in all the same. My dizziness is still with me but I'm coping with it at the moment. I'm not sure if anyone else experiences any ear fluttering sensations, this has been happening to me now for the last 2 months or so and in the last few days preseeding the fluttering I now get a humming noise. Although it doesn't last long it does come back many times during the day and is quite annoying. After yet another visit to see the ENT specialist, I think he's come to the conclusion there really isn't anything he can do for me, injections and operations aren't going to help as by fixing one type of Dizziness it would make the other types worse. All he could come up with were VRT exercises. Apparently we don't have a VRT therapist in Cornwall so it's down to finding some tracking exercises on line! Although my Dizziness is never far away I try not to give into it and remain quite active, I still dont feel well enough consistently enough to return to work and some days that really gets me down as I just want to be like everyone else and lead a normal life and not feel like I'm making excuses why I don't work just because I look well. Best wishes to all Sue xx |
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Hi Everyone, I posted something about peppermint tea on here a couple days ago and it never showed up. I know I hit post. Well let me see if this one shows...testing...testing |
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Hey all, Glad to here that everyone is doing alright. I'm slowly getting better just like everyone else. I'm starting to wonder if Lyme and Co. are the issue with me, though, right now. I've taken antibiotics for over 6 months now and haven't really noticed a difference in taking them and not taking them. I was always improving even w/o them, albeit very slowly. I've had no other symptoms other than the occasional stomach pain that comes along with taking all of the antibiotics. I've also not had any other symptoms that Brad and other people with Lyme seem to get. It just seems highly unusual that Lyme, Babesia, or Bartonella are only causing issues to my inner ear for the past 8 months. I've never had anything else go wrong, and part of me is worried that I will just screw myself up even worse by taking the antibiotics. Some of these have some pretty potentially brutal side effects. That's the most frustrating thing about all of this Lyme stuff for me. It's almost like randomly throwing darts at a dart board. There really isn't a whole lot of confidence on what this stuff is and how to fix it. The only approach currently is just to take gallons of all kinds of antibiotics and cross your fingers. I don't doubt that this works for some people, as I have seen examples of its success. Unfortunately, those of us who have it need more research on how to cure it, but the current doctors are doing the best they can. I am currently tending to believe that I have vestibular neuronitis/layrinthitis like the rest of us on here, and I just have to deal with the long recovery. Lately I have just been learning to accept my slightly off state. The worst part about it is probably my tinnitus right now, and I don't know if that will ever go away. What keeps me going is the hope that I will continue to get better... even if it is at a slow pace. It just sucks having your life altered for such a long time. The one thing I think we can all benefit from is just trying to be extra healthy. Eating, exercising, and possibly some supplements. I see some talk here on SSRIs. I guess they have been working for some people? I don't really have much anxiety, but something to help me forget about the tinnitus and my remaining slight dizziness would be helpful maybe. I would be willing to give it a shot. I tried some Lexapro, but I think that stuff was just waayyy to much for a guy like me. It made me feel kinda crazy and wired. If I was going to take one, I would just get one that had a mild effect. I guess I will talk to my doctor and see the difference. For those that don't have 24/7 tinnitus, be thankful. It's got to be the most annoying symptom around. Even when you are feeling good otherwise, it's always there to remind you you are not normal. Mine is so high pitched that I really can't drown it out with noise. I measured it and it appears to be in the 12Khz or greater range. Grrrr... Melissa, did you have to deal with this at all??? Are you still dealing with tinnitus too, Gloria? How's everyone else doing? |
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my stuff is not posting on here! why? testing, testing again.... [Because I was on holiday with only intermittent and very slow internet access for a few days — Rich] |
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Well hi all It's been a while since I posted but I guess as time goes on there is not a lot to report that i haven't said before. I am still suffering with the swirly head feelings and some ear crunching and fatigue but like claire said just learning to carry on and do things and TRY to forget about it if I can (easier said than done). BTW Claire so glad you had a good hol. Gives us all hope! Went for my first three course posh restaurant meal since labs hit. It was for my partner's birthday at the weekend. It went ok overall. I was so tired afterwards though, the long drive there and all the sitting and talking just tires me so much. Cut down my vrt but still try to do a bit each day. Still seem to have week or so of quite good then a few more weeks of not good intermingled with some horrible little moments and resurfacing of a few of the worse symptoms. Just enough to remind me of the early days but thankfully things seem to subside and improve quicker back to the standard 'off' feeling. Glad there are some improvements on here albeit some like me have stagnated a bit and waiting for another tide of improvement to hit (fingers crossed!) Hope to hear from some of the old timers Sandie, Gloria, Ashley, Gary and everyone else keep posting and keep improving! xxx |
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Hi everyone, Hope everyone is having a good day. I was diagnosed with occipital neurolgia. My VRT therapist thinks that the pinched nerve may have something to do with my vertigo so, now she is working on my neck instead. I was just wondering if anyone else is having a problem with a pinched nerve and if physical therapy has helped their vertigo. Hoping everone has better days ahead. |
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I see it now, thank you Rich. |
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Hi everyone, Thought I'd say hi to all of you. I last wrote back around christmas. I had my last labs dizziness back in the first week of February. I think it is gone for good (fingers crossed). Unfortunately, when I had my last episode, it was when I was in the hospital for a heart attack, so that's bad news on a different scale. I think the stress of the situation brought it on and I'm hoping that my body just decided that it's now got a bigger fight to deal with. I'm only 45 with a healthy lifestyle, female,but with a family history of heart disease; they said that by the severity of the damage in my heart the attack was not preventable, was totally due to genetics. It's an ominous battle, but I am normal a lot more now, except for the angina I experience everyday still (heart disease really sucks). The hardest part has been dealing with all this alone because I am single. But a note to all gals out there: heart attack affects 1 in 3 of us and the symptoms can be vague. I only experienced intermittent indigestion as a symptom and I am VERY lucky to be alive today. Regardless of the issues we are having with our bodies, we need to learn to trust our instincts and slow down and listen. Anyhow, I still experience dizziness, but of a different sort from all the heart meds. But at least I know the 'why' of this new dizziness. I'm glad support groups like this exist for all who need it. It certainly felt good to share my story as well. Good luck to all and always believe there is an end to all those dizzies! Be strong. E. |
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Hi all, So lovely to hear from you. Especially Claire, Jemma, and Sue who have been on here for as long as I have. Claire - I'm so thrilled for you. You have really inspired me to not be afraid of flying! Just have to raise a bit of cash for a holiday - need to work on hubby a bit!! You are right about having to get on with life and deal with how you feel on a daily basis. When you feel good - go for it - and relax a bit when not so good. We've all been on this roller coaster for so long now we have to live life to have a life! Jemma - glad you enjoyed you 'posh' lunch/dinner. Any alcohol??!! This last week has seen me have the grand total of 3 glasses of wine - whoopee!!! That is a complete first in 2years. Won't overdo it though as it will be tempting fate! I think you are right to do a little VRT still. I've gone back to doing that myself. Recalling what a physio told me about having to do it every day ongoing. Any thoughts about going back to work or are you moving on to do something different? There was an article in the Daily Mail 2 days ago about a woman who had this for nearly 5 years. Oh dear - let's hope we may be spared in a shorter while!!! Sue - good to hear from you too. Sorry you are still battling. Know what you mean about coping most of the time, but sometimes you just want to scream as patience wears out with having to deal with all the oddities of this rubbish. So felt like that last week. Yes, I get all the odd clicking ear-fluttering noises too. Seems to be something to deal with every day let alone the dizzy stuff. I do think some VRT will help. When I wasn't too good a few days ago, I started the old VRT again and it has helped. There are a lot of exercises posted by Sandie and a couple of others on here back on pages 11/12 - you'll need to go back and scroll through. They are a list so easy to spot. Quite explanatory but if you aren't sure Sue just say. Chuck - so pleased to read your update. It is very difficult to try and assess what is causing what especially when you were positive for Lyme. You are between a brick and a hard place as taking long-term antibiotics are not without side effects and could well be dizziness. My tinnitus is easier but still there. I did buy some herbal stuff off of the following website which also gave some good info. I also bought the white noise CDs. If you are happy to give it a go it is purely natural. The website is www.tinnitusremedies.co.uk but do ship internationally. I did find the remedy helpful and lessened my tinnitus. 2 years down the line, my conclusion is that for some of us recovery is SLOW, but are getting there and will get there. You too, will succeed along with the rest of us. Until we get to the end of all of this we will support each other along the way and shore up our waning patience and thinning hope. My love and hugs to oldies and newbies. Onwards and upwards. Gloria xx |
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Candie, Yes I too have 3 pinched nerves in my neck and I know it was a major cause of my labs/dizziness. Yes VRT and physical therapy worked for me. My therapist gave me exercises to strengthen my neck muscles and she would gently massage my neck. It helped greatly. I was in PT for 6 months. In the beginning I went twice a week. Then the last 2 months once a week. Good luck! So hi all, I have been having fluid retention in my ears. I do not have dizziness from it though. They just feel like there is a lot of pressure in my ears, almost like they may explode. It hurts and is annoying. It is worse at night. So I decided to take the hydroclorathizide (water pill) the ENT prescribed me 2 years ago. It helped get the fluid out, only it made me weak and light headed!! Cant win! Keep the faith, Melissa |
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Melissa, I'm glad to hear that physical therapy & VRT helped. This is only my 3rd week in physical therapy. I am going 3times a week right now. I'm hoping that the dizziness will subside soon. At least now I know I'm on the right track. I feel better after hearing that it helped you. Hope your ears are feeling better. Take care. |
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Hi Everyone, Wanted to check in as I thought Sydney was feeling better, but she says she's not and she says she's feeling better than at first but she doesn't feel good everyday and she's asking if she's lost her mind? Does anybody ever feel like this? If you get a "glich" does it make you feel like you never felt better? I'm so disheartened to have her say this. What to do? She is still on the zoloft and valium (small dose) for the balance. Her ENT office wouldn't see her the other day cause I didn't have the 30.00 co-payment. Thanks for listening,or rather reading. Take care, Kathy |
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Kathy, Sydney is moving forward and it is a slow process. There were days over the last eight months that I felt I lost my mind and there was no hope. She is trudging down the long road that many on here have followed. Feel good, relapse, feel great, relapse, it can be so devastating when you relapse. I'm sorry that drs are so heartless when it comes to money. They take that oath and then only follow it when it benefits them financially. I fired my ENT. He was so nonchalant about this and NEVER remembered me or even pretended too. I am disgusted by them. Sydney is a kid and should never be turned away. She is going to get better and it is hard to believe that, but she will. I cannot imagine how hard this is for you to watch. I'm so glad she has you. How did school go for her? Was she able to attend? Did they let her work from home? I hope she turns the corner soon. Tell her she hasn't lost her mind it is only rewiring and repairing. There it hope and she will find it. I'm thinking of you both and hoping the very best. B |
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B, Thank you so much for your words of encouragement. It really helps. Her school let her do home-hospital for the last month, but it didn't really help because they still wanted her to turn in a full load. I try to get her to take a break every half hour because it's causing her a lot of stress as she likes to do perfect work. Right before she got sick she got an application to join the honor society for her school, hopefully next year. With all the doctors we've been seeing at 30.00 a co-pay plus 64.00 a month to keep it I just didn't have it that time, but they don't consider the monies they've all ready gotten from the insurance, it really is a shame that they put they're money first,no matter how rich they already are. I really am so disappointed in the doctors here, so much more so since this happened. Not only are they greedy but they don't know too much about anything really unless it's to tell you you have a virus. Where is Dr House when you need him?? I mentioned before how we are still in the Fred Flinstone era of medicine,Fred Flintstone is a popular cartoon here and the main charaters are cavemen. I really appreciate that Richard Baker made this site available, I have gotten on other sites, anxiety sites for instance and some of the people there are just nasty,to put it midly. This has been the best place to get information and encouragement from some really nice people. Thank you again B. Take care, Kathy |
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Hi all, Kathy - Sydney is following the path that is unfortunately so normal for labs - as B has said. You are up and down like a yo-yo. It really is the most horrible of things to have simply because you don't just carry on getting better like most other non-life threatening illnesses. My concern would be the fact that she is trying to carry on with all her school work. I understand the reason for her wanting to do it all, but not sure if the work load is helping at this time. Would it be possible to speak to the school Kathy and see if they can lighten her load given the circumstances or stretch out the timescales so she is not having to do so much in such a short space of time? A daughter of a friend of mine was at University a few years back and although quite a complicated situation, basically because of her profound deafness, she suffered terrible depression which affected her ability to work. It was her finals year. They did give her six months to defer her project she had to do. Anyway give a big hug to Sydney and tell her the groggy days do get less and less. Hugs to you too. Me, well I'm having to see a neurophysio because all the muscles in my body have tightened and spasmed. Apparently, because the link between muscles and brain hasn't been working properly, my muscles have been over-compensating. The fact that I have also gone off like a woman possessed to get fitter hasn't been the right thing to do at all!!!! SO another thing to deal with, but am feeling a bit better although over the week-end was not as brilliant. Melissa - I take those water tablets but I'm on a really low dose 2.5 over 25. Have a look at your dosage. If it is 5 over 50 then that is quite strong and probably would have made you feel lightheaded. Mine is for keeping my blood pressure in check rather than fluid in my ears but it may have helped - that said here I am at 2 years so maybe no theory in that LOL!!! B - hope you are having a good spell at the moment and that your daughter is having better days too. Was there a final diagnosis for her? Anyway, housework, grocery shopping and ironing all beckon today - such an exciting life! Love and hugs to all - keeping the faith and we WILL win this tedious battle. Gloria xx |
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Hello all, I know I havent been on here much but I still pop in every now and then just to see how everyone is doing. Just a quick update on me: well I am doing really good - fingers and toes crossed just in case I jinx myself. I've continued having the epley manouevre done, I've probably had it done about 4 times now but each time I have it done I do seem to move a bit further forward. My lab symptoms are now very mild and most days not there at all and I am back to driving - yey! I still have bppv which for some reason just doesn't seem to want to go away. It is tons better though so cant complain too much. I'm also still a little bit light sensitive but the physio puts this down the bppv and is positive that this will completely go once the chrystals all go back. Its taken 19 months to get where I am now and if anyone remembers me I've had quite a ride just like most of you on here. I am now job hunting - which is a task in itself as there doesn't seem to be much out there at the moment so some positive thoughts this way wouldn't go amiss lol. I will let you know how I get on when it happens. Love to everyone, especially the old crowd who helped me so much when I was so low with this - Gloria, Jemma, Claire, Melissa, Sandie, Ashley Hugs Shirley x |
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Hello everyone After spending the last few days reading about your struggles, and victories, against Labs, I am finally brave enough to write my own!! I have had this now for only five weeks, but I have to say that it feels like a lifetime already. I feel as if some of you are like my oldest friends, Gloria, Claire, Sandie, Shirley, to name but a few and thank you all for sharing your experiences. I went to my Doctor after a few days and was told 'this can be quite debilitating' and given a prescription of Stemetil, which I haven't taken as after reading here it seems they will only halt the recovery progress. I am feeling slight improvements, but for every couple of good days get the setbacks for another few! Very demoralising. I have got the ringing and fullness in the ears, problems with the supermarket, reading and with the computer, and as I read / work on a computer all day this is very troublesome. Although the dizzies are fading a bit I still feel very off balance too. A few pages back it was suggested that alcohol triggered attacks and I have actually found that a day after a couple of glasses of wine are the worst, so am now steering well clear to see what happens! Groan... it is hard work as I love a glass of wine to unwind (no pun intended lol) at the end of the day! Also, trying Benadryl in case my hayfever is causing more problems! Fingers crossed. I have quite a stressful office job and although I have managed to work all through this so far some days I could just lay my head on the desk and cry! I'm trying hard to combat the anxiety and it has really helped me to get some perspective reading others' stories. So, thank you all. Wishing you all the best Jane x |
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Gloria, In the states my dose is the lowest they can give me. It is 12.5 mgs half of the lowest dose usually prescribed for blood pressure. It worked it's magic. I took it for 3 days and the fluid went away via my urine lol. Melissa |
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Hello Everyone, Thank you Gloria, yes her school work was causing alot of stress but thankfully tomorrow is the last of it for awhile. It always helps to hear that things will get better. So this also affects the muscles too? I notice at night or even when Sydney is asleep in the morning that she has a lot of muscle movement like jerking and jumping. Hope you are feeling better today Gloria. The weather is getting hot here, yuck! Does hot weather affect this labs in any way? It seems everything does. Wish I could meet you all in person..anyone ever vacation in southern california? Big hugs back to you Gloria from me an Sydney! Take care-Kathy |
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Hey all! I hope everyone is doing great. I have a quick question that maybe some of you can answer. Does VRT really work? I mean, I have been improving ever since I got this mess, and I actually am not really that dizzy anymore. If I had to describe it, it would be more like spacey. Of course sometimes it's worse than others, but it's becoming more and more manageable. Would VRT with a PT benefit this type of spaciness? Should I even bother with it? I have been working out and walking several times a day... basically I am trying to keep active as much as possible. I figure that counts as VRT itself, or does it not? What magical things do they do that supposedly works? I have done some of the Cawthorne-Cooksey stuff, but I have never really stuck with it. Is it much different from that? |
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Jane, We've all been through the same crap. You are still early into it, so maybe you'll be one of the lucky ones who get 100% quickly. Yeah, I was just as bad regarding the supermarkets, but I am much better with this now. I'm sure you've also had some trouble sleeping too, and this too will improve. It's funny because I had the problems with computers way early on into this mess, but that problem went away pretty quickly... probably because my job involves looking at a computer screen all day and my brain has adjusted to it. I still get the fullness but rarely. The tinnitus just started for me one day early into this whole mess and hasn't left. It's mild, but annoying since it's always there. I believe we will all get better, but I can sympathize with the tears and depression. It's no fun having your life adversely affected for such a long time. I always promise myself that I won't take my health for granted anymore, and I am really a changed person for the better in many ways. Hold on to hope and live each day to its fullest. As they say, "this too shall pass". |
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Hi Chuck, I was just going to write about the VRT when I saw your comment. My experience is that I didn't start to see any real improvements until I started doing VRT, about 4 months into the illness (I'm now at 6 1/2 months). I started to dramatically see improvements within 3 days of doing VRT, much bigger changes than with taking a walk or challenging my vestibulars in general. Also, the Cawthorne Cookseys didn't really work for me. My VRT therapist explained that you have to do each exercise at least 1 1/2 minutes before the brain starts rewiring, and the CC exercises aren't long enough for that. But what I wanted to say is that I had been feeling so much better last week, after staying vigilant with the exercises and also the walking, but I slacked off on both and within 3 days my head went back to being as crackly as ever. I feel as if that's the time frame - 3 days of doing them and I start to feel almost normal, and 3 days not doing them so much, and I totally decompensate. That's just my own experience - with others it may be different. Yesterday I thought I would do some heavy shopping and errands instead of a nature walk and VRT, and I felt horrible with a screaming head at the end of the day. A few weeks ago, same thing: I was on vacation and took long steep hikes instead of VRT, and got a screaming head. So for me VRT seems key - that and walking, but not for too long or it reverses. And walking in nature is much better than walking through crowds, which still makes me ill. It's so hard to keep on track, but it's not worth it to skip. I was feeling best when I was doing them 45 mins. to an hour a day. I felt a huge dip in stability when I dropped to 15 to 30 mins. a day, which is pretty much what I'm doing now and I don't feel so hot, so I'm going to up it again and make sure to walk every day. I hope this helps! |
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Chuck, Thanks, You're right I have had lots of trouble getting to sleep, waking up at ridiculous times too. I am still not confident enough to walk to work again - its about 2 miles and previously I would walk it and really enjoyed it - as I still feel as if I'm leaning on a wall as I walk along .. lol.. not a good look! I'm in front of a screen all day long too but it is still one of my big problems. I don't know if anyone else gets this, but for the first time since this started I met a friend in a bar (though I was only on the fizzy water!) and I found it really hard to cope. The lights weren't particularly bright, but the voices all around seemed to affect me, and I found it really hard to get the meaning of what my friend was saying to me... I could hear her, but couldn't process it with all the other noise around me... does that sound familiar to anyone? After a while I could tune them out, but it was not a good feeling. Hope you've had good days today, I'm supposed to go the theatre tomorrow night and am a bit worried about how I will cope with it... I'm okay when travelling, just not sure how I'll feel stuck in a seat for three hours surrounded by noise. Time will tell, and coping tips much appreciated. Jx |
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Hi, Guys! I hope everyone is doing ok! I am improved, but not where I want to be. I woke up today with the wicked swollen eye and fluid in my ear. It subsides when I start moving around and it no longer makes anything worse, but it used to be just awful to wake that way. I am starting to believe that this all started with allergies and stress. I don't feel like it will ever totally resolve, but if I'm being realistic and it continues on the path it's been on for all this time then it will. I think back to the beginning and how horrifying it was then so it now seems easy. I still am puzzled why I had the intermittent dizzy spell for almost a year before this became permanent. I may never know. I don't suffer all day, but it comes on with the head filling with water feeling and I get unable to think, unsteady, and feel really really out of it. That feeling won't go away once it starts. I wish it would just move on already. I so badly want to go back to work full-time. I'm so tired all the time, especially after work and chores and such. We have to trudge on, but some days are harder then others. I very much like my Dr. but don't know if he can change anything. I am going to see a Neuro next month. I know it's a time thing, but nothing wrong with trying!! My daughter is much much better!! She was so miserable for so long, but we found the right diagnosis and meds! She is 100%! Thanks for asking! To all the newcomers, I'm very sorry you're here, but it is a great place to find resources and comfort! There is hope. Good health to all! B |
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Hi Jemma, yes I am still here. I still like to have a look in to see who's posting. Glad that you are a bit better but sorry that it's still hanging around for you. Same here, I'm off and on dizzy. Dizzy at the moment because of allergies and the high pollen count and I keep getting a strange sensation of falling backwards. I have suffered from that in the past but it's back again. Oh well, that's just life for me! Jane - too late for this tip as you will probably be at the theatre now but I always used earplugs whilst in the cinema/theatre as it helps block out the loud noises and you can still hear perfectly well. The silicone putty ones are the best as you can mould them to fit your ear perfectly and they stay in. Shirley, so glad you are doing so well. And, you are doing well! Looking for a job, that's amazing and I wish you luck with that. I'm not ready for working yet as I still have a lot of off/on symptoms and don't want to risk a relapse but my life is so busy now as I have to give a lot more time to helping my parents so that fills my days! Everyone else - hi to you all and welcome to the newcomers. Take care Sandie xx |
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Hello again Just wanted to post this link to a website where you can download a leaflet about ear problems. I find it to be really good. http://www.brainandspine.org.uk/information/neurological_conditions/dizziness_and_balance_problems/index.html Let me know what you think! Sandie x |
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Sandie, I'm sorry you're not having a good time of it at the moment... I have followed your 'story' for so long now.. and have taken on many of your tips already! I went to see Pygmalion - the journey was fine as I thought it would be, but when we actually sat down in our seats I had the strangest sensation - there were a lot of voices all around and each time I moved my head around or tried to look at the programme I felt like I was sort of going to fall through the floor... only lasted a second, but it was horrible! Didn't feel sick or anything though. Once the show started I had to really concentrate and found my eyes were a bit strained - although we were near to the front and could see them as clearly as anything! I also felt like my head was a bit wobbly - this probably sounds weird!!! but I felt better when I supported my head on my hand and rested on the armrest! By the second half I must have got used to it as I felt better. Don't know if anyone else has that? I thought maybe it was a brain overload or something, too many voices? I will definitely get some of those earplugs though, for the next time I go out anywhere. I have to say that it does put me off going out that real disorientation feeling! I will go and have a look at the link now, Sandie, and thanks. Hope you feel a bit better soon Jane x |
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Hi Jane I didn't attend the cinema (same kind of thing) for a long time when I was first struck with VN, in fact I didn't do much. Any kind of noise caused a massive increase in my symptoms even someone talking too loud. I so love the cinema and eventually forced myself to go and felt exactly how you describe - like I was falling off my seat! I also know what you mean by the wobbly head but I used to describe it as my brain moving about. I said this to my GP once and she said to me with such a serious face "well your brain actually can't move about" DUH! Keep doing stuff like this Jane and your brain will get used to being in noisy situations. The ear plugs were a must for me for the first few years but I can manage without them now even though noise can still be a trigger for me. Yes, my story has been a very long one but the thing is that I am now in a place where I know exactly how to deal with it and it doesn't freak me out as much. Oh, and by the way resting your head on your hand is a classic sign of someone with the dizzies. I do it all the time and it does make you feel so much better. I read it somewhere once! Take care Sandie x |
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Hi everyone Just wanted to pick up on what Sandie said to Jane in her last post. The thing about resting your head in your hands is classic labs/VN. I know because I did it all the time at the beginning and still do it now if I am in a busy noisy situation. Often when I see my mum and we are talking I find myself resting my head back against the sofa. I believe it is because our brains are sub-conconsciously telling us to get our bearings all the time as they are confused by the faulty messages from the vestibular system. The brain picks up all the little messages it gets from the muscles about our spacial positioning so by touching things and resting against things we are giving our brains the increased perception of where we are. This also links to the theory of VRT and the retraining of muscles to pass on sensory perceptions to the brain in the absence of normal signals from the ear and why so many of us have tight necks and muscles. Many of the balance receptors are found in the neck area which is why we often have a sore neck with this. Jane I also have trouble concentrating when I'm in busier environments, it's like your brain isn't processing everything properly. Again I think this is typical of VN because our brains are using up extra space with balance now we cannot take in everything we used to do without thinking about it. B so glad your daughter is better. that is at least one worry off the list for you. I can completely identify with the tiredness you describe especially for you having to work and take care of your daughter. It must be tough but hang in there. Gloria you sound like you are improving now you are at the 2 year mark. I am glad you are enjoying your job. I am at the stage where I am a little bored sometimes at home but don't feel able to commit to a job and all the sresses that involves. I still often have to rest after doing things because I get tired so I am scared to push myself too hard. I seem to be in a pattern of a couple of ok weeks and a couple of worse weeks but there can be random good and bad days too. By the way gloria, did you sell your house in the end? Shirley really glad you are feeling so much better and good luck with the job hunting. Everyone else hope you are all seeing improvements! Love Jemma xxx |
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Jemma, thanks for reiterating what I said. When I was going through my ENT visits in the early days with this I was told by my balance therapist to touch something solid if I was feeling bad. This definitely works for milder dizzy days but not for the more intense ones! I also learnt another very good tip which was to do plenty of walking as it really helps your head settle down. I know I'm not the best person to post these hints because they obviously haven't worked for me LOL. But, he did say that if you are out and about and feeling bad then to walk faster - this definitely works. Jeez, my kids have had problems keeping up with me over the last few years!! My mother has dementia and is unable to walk normally. She walks at a snails pace and I find it very difficult to escort her as the slower I walk the dizzier I feel. Jemma like you I have a couple of good weeks and then a couple of bad. The bad are focused around that ''time of the month' - the week before and during are my worst. Then I can feel pretty good for a couple of weeks and then it's back again! Oh well at least I do get some relief! Take care Sandie xx |
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Dear Sandie and Jemma Thanks so much for your posts. I'm so relieved to hear that I'm not losing my marbles and that my 'wobbly head' is just another lovely symptom! It really was the strangest feeling. Also holding onto my head is something I have been doing a lot of too lately so thanks for the tips on that too. I am going to try and walk to work again next week and see how it goes... I don't feel as wobbly when I'm walking around at the moment although I have had to give up wearing my FitFlop boots as they literally make me bounce up and down! I have found that wearing shoes with a harder sole much easier to walk around in. I'll let you know how I get on! xx |
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Jane I've had the shoe problem too! I wore the same old shoes for years because I could not wear anything that had a different sole or a heel as it would make me so dizzy! Going back a couple of years to when I was working at the Garden Centre (on my feet all day) I had left my work shoes outside overnight and they were damp so I couldn't wear them to work. I had to wear a different pair to work and they were just a pair of slip on mules with barely any heel which I had had for a while. They made me feel so off balance I had to phone my hubby and tell him to bring a different very flat pair to work for me. Quite funny really but not at the time for me! I have seen me go out of the house feeling great and not even get to the bus stop 5 mins away when I have to come back and change my shoes because they have a heel on and I start to flail all over the place. You would think I was talking about 6" heels but I'm talking about nothing more than 2". I have brand new shoes all over the place which I just can't wear (even now). Same applies to uneven ground. If I am standing talking to someone and the ground I am standing on is not flat then I have to move away because I get dizzy. Phew what a life but you can work round it thank god! Take care Sandie x |
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Hello everyone, Just thought I would check in to say a very big hello to you all. 6 MONTHS into this rubbish. Where am I now. Odd bad day but mostly at 99%. Some high pitched tinnitus left ear only - fades during the day. Stonking periodic headaches - about one a week - same with some mild neck pain. Also appear sensitive to pressure changes. Some free floating anxiety that comes and goes. Meds wise - nothing for 3 months apart from the odd aspirin. Best wishes to you all and thankyou for you support during the worst of times. I am still checking your posts and following everyones progress in overcoming the beast. Stay Safe, BINX1965 |
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Hi Everyone, Havnt posted for a while but have been reading all the posts. Seems like a few on here are making good progress. Good for you Binx to nearly kick this thing into shape. Sandie i also find when walking if i notice i am umbalanced if i walk quicker this really helps, you would think it woul be the opposite! Also i have a reasonably good two weeks (for labs that is) then at the monthly time get the heady/dizzy, feeling slightly nauseous when turning my head, and wham all the symptoms back again. Unless you have suffered with this there is know way you can explaing all the silent symptoms to a 'non-labbie'. I am at just over the 18 month mark and cope with it so much better than i did. Shop lighting, fast moving tv programmes and certain noises are still bad triggers for me. Also if i am talking to someone for a long time, find it hard to focus and feel like the background is moving. Fullness of the ears comes and goes now, the tinitus is there daily but can cope with that. Neck pain is still there, but just seems to be part of daily life now. One good thing is i havent had wobbly or jelly legs for a while, hope this is a good sign. I just keep hanging on for that 2 year mark when alot of people seem to recover, probably expecting a miracle, but we have got to have goals to aim for, otherwise labs would drive you bonkers. Think it has made me much more sympathetic to people with long term or chronic illnesses so something good has to come out of what i feel has been a year where i only half existed. Anyway to Jane and any newbies on here at least this site makes you feel that you are not alone and so much good advice is given on here, as most have found doctors etc not very understanding unless you are one of the lucky ones. To everyone else wishing you good health and dizzy free days and hope we can all be free of this soon! Love Wendy X |
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Hi BINX Glad to hear that you are feeling so good at this point in time. When I first got this condition it was at the 6 month mark that I started to think of going back to work. I was still having symptoms but they were a lot milder. Of course, it was just the start of the rollercoaster journey for me and six years later I still suffer. I sincerely hope that you move on from this and never ever have a relapse. Good luck to you! Take care Sandie x |
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Hi folks: Just thought I would chime in again with more lyme and Babesia info. For most lymies, Babesia (a common co-infection) can cause the labs symptoms. It is related to malaria and is very difficult to detect, often only affecting 1% of red blood cells. Here is an interesting thread you may want to read. Notice the similarity to Labs symptoms. http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/108403 And this one for symptoms http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/105141? |
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Hi Wendy Everything you have written is very typical of Labs/VN. I have tinnitus too but it is very mild (thank god) and has never really bothered me. I used to suffer that off an on before all this started. I have never had neck pain but I do think that comes with been scared to move your head and 'stiffening' your neck because you know it brings on symptoms if you move! Lots of people suffer from neck pain with this. All of your triggers that you have at the moment are ones I have also had but you will find that as you go on with this (if you do) they do not affect you EVERY time. Sometimes I can go shopping and be perfectly fine, other times not. My balance has been good for a good while now. Mine used to be very bad and then it would go away and come back again time after time - but it has been a lot better for the last year or so. As for the two year mark - I do hope that it's all over for you by then. Didn't happen for me but then I read somewhere that five years was also a benchmark for people with this condition and that has been so for me. I have not recovered by any means but I don't suffer as badly as I used to and have not had a major relapse for over a year. Whether that's because I gave up my job or not I don't know - life is so much easier with Labs when you don't have the stresses of a job! It does make you more caring to other people too as you never know what they are suffering from. I look so normal to others but I feel so damn ill at times! Take care Sandie x |
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Hello, to you all, I havn't posted for a while as a bit like Sandie,although things are not always brilliant and the "Dizzies" come and go, things are generally better. I'm hoping the 5 year mark is going to be good for me. Like most people on here, I think I have had quite alot of symptons, and it's only when someone on here reports the same ones that you have, that you realise you are not alone and you're not going mad. So thanks to you all.I know exactly what Jane and Sandie means about certain shoes that are too bouncy, I have a lovely pair of boots that make me feel really wonky! Thanks for all the usefull tips and advise Love to you all Sue xx |
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Hi Sue This year being a bit better for me I decided to buy a new pair of boots. My one and only pair are now 25 years old. They were very expensive and still look brilliant and are a very classic style so they have stood the test of time! Anyway, I got a gorgeous pair via mail order but they had a bit of a heel (only a couple of inches) and after a few minutes of wearing them around the house they had to go back. So back to my good old trustworthy boots with a very low heel! Could you imagine us teetering around on these really high heels they have nowadays heehee. Anyway, it's that dreaded time of the month for me so not feeling brilliant but managed a couple of hours in town yesterday. Sue, I think I have had every symptom under the sun with this condition, not all at once but plenty of them. I am so glad it is better for you now although I know it is still a tough journey at times. Keep smiling :-) Sandie xx |
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Hi Everyone, I know I am repeating myself sorta but its about the jumping and twitching. Does anyone have it when your up during the day? I know I asked about it when your asleep but Sydney notices it when she is up during the day also. I am now in the process of trying to get an appointment with an otoneurologist. I heard about a Dr in Chicago by the name of Tim Hain. He is supposed to be excellent for dizziness and migraine type disorders. So because I am far from his office I checked with them for someone in L.A. to see, but of course I have to jump through hoops to get in. Will keep you posted on this. Hope everyone is having a good day. Kathy |
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Kathy, Hello. What do you mean jumping and twitching? I only have a twitchy eye lid or muscle in my knee and thumb, but just slight. I worry for you guys. This is so much on the shoulders of a teenage girl. I hope you can somehow see this Dr. I know he is far away and the cost would be insane,but maybe there is a cheap plane ticket out there! How long has she been suffering now? Too long. I keep hoping she is going to wake up well. How are her other symptoms? Is she able to get out and about to be a kid? I wish we could find a fix for this miserable, misunderstood, life-altering illness. How are YOU doing, Kathy? I hope this otoneruologist can help. What is that exactly? I hope things improve for your girl. Keep us posted. Take care. B |
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Kathy: Jumping and Twitching along with dizziness, etc. You should strongly suspect LYME. Difficult to diagnose..you must find an ILADS trainded LLMD. Here are symptoms of Lyme Disease with Bartonella and Babesia. 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, Lovely to catch up with all your posts. Well, I had an appointment with my ENT consultant this week who was ready for me with a prepared discharge notice in his hand. He asked me how I was and my resigned reply of 'OK but not normal and coping as best as possible, plus this maybe it is as good as it gets' was greeted with his affirming nod. He said that no-one can say if or when I will feel 100% and because I'm complicated (my hubby would agree with that statement LOL!!) because of my migraines, it makes it more difficult. I should try and persevere with the migraine meds to see if they will allay the headaches to allow the brain to fully compensate. I haven't touched the meds yet - the side effects list is the scariest ever - will try though just to see if it does any good. He then wished me luck and told me to go away and enjoy my life!!!!!!!!!! So, now I feel strangely alone. I know I'm not, but I suppose throughout this long process, you still hope for an 'expert' to say everything will be fine in a another 3/4 months or whatever. Anyway, great to hear from you Sandie, Binx, Jemma, Sue, Wendy, B and Kathy and everyone else. As I was coming out of the hospital I thought throughout this whole nightmare you have all been the people who have really helped me the most by just being here and understanding. My love and thanks to you all. I don't think I will ever not need this site as it is and has been a great comfort and support. Well, Jemma you asked about my house - no, it is still not sold. We have had a few viewings, but the house market is so dead. We have been advised to drop our price again, but that puts us in negative equity and we can't afford to do that. So we will wait until September, then take it off the market and try again next year. I'm doing reasonably well, can't say 100% brilliant - every day is a bit of a challenge with some symptom or the other, but I do carry on. Still at my little job twice a week as hairdressers' receptionist. It cannot be said to be challenging, but do I feel tired when I get home. If it wasn't for a friend and I was in a more formal place of work - then I don't think I could manage at all. No plans for a holiday this year. What about anyone else - does anyone feel brave enough to go away with labs? Anyway, love and hugs to all my lovely buddies - old and new. (Don't mean age-wise LOL!!!) Gloria xx |
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Hi all Hope you enjoying the weekend, just watched the ladies tennis final at Wimbledon earlier, but looking forward to the mens tomorrow, especially with Nadal playing!! Say no more, hope hubbie doesnt see that, dont want him getting an inferior complex! Im much the same, its monthly time so have had the nasty headaches and wobbly legs back today and general feeling of unbalance. Drives you mad some days, but I know there are the good days as well but cant help but panick sometimes thinking its all back again. Must get it into perspective. Has anyone noticed that their circulation has got worse since having labs. Mine has always been bad, but worse lately. Had some bloods done and they came back normal. Im sure people think i am just making it all up! Gloria, your latest appointment must have been so dissapointing for you. Even if there is nothing else that can be done, a little empathy from the doctor wouldnt have gone amiss! They have obviously never suffered from anything like this. I can inagine how low you must have felt when you came out. If trained medical staff cannot understand or sympathise with us, then we dont stand a chance with the general public! I hope you are feeling better now, thank goodness for this site. Good to hear you are enjoying your job. At least it is a start for you. I havent quite got to that stage yet but some days long for it and then i think how tiered i get now! Will hold on for a while. Not that there seems to be many jobs to back to now. Sue and Sandie, you are both past the 5 year mark now. It must feel like a lifetime, glad you are both coping so well, as we have said before it is just a way of life, good days and bad days. Hope you both get some sort of closure with labs soon, long overdue! Hope everyone else on here is doing well, Jemma, Claire, and B hope your are doing good accross the miles! Hope your daughters health has picked up. My daughter since leaving school is doing really well, her eating is more or less back to normal, a bit controlled at times but better than it was. Anyway please take care everyone, and good health. Love From Wendy XXX |
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Hello All, I googled can labyrinthintitis cause jumping and twitching and I found the answer was yes, quite a few people have this with labs. I notice it quite a bit when Sydney is sleeping. Thanks for your good wishes B, she does get out but most days are still difficult. The otoneurologist we are going to try to see is here in L.A. which isn't too far, the one in Chicago is the one too far and I can't afford to go there. Sydney's family doctor has taken over a week just to fax the referral over...such a waiting game. I'm not exactly sure what an otoneurologist is but the one in Chicago is known as the Dizzy Dr. His name is Timothy Hain if anyone wants to check him out and can afford to go see him. I've read where he is really good, so I emailed him to suggest someone in Southern California as there are only a handful of them. By the way, Sydney had a UTI last week and the dr. prescribed CIPRO, do not take this, after a few days of taking this antibiotic she kept feeling like she was feeling like in the being and I stopped it and googled "can Cipro make you feel like s#%&@? Oh yeah, everything she's been fighting the cipro brings on. EEEhhhhh!!!! Brad I will bring up Lyme when we get our appointment, I don't know where we would of come across ticks though, we don't live in very grassy area. Gloria, I know exactly that feeling of feeling strangely alone, I have felt that sooo much this year and when you go to the Dr. and they know less about this than you, ugh, it's such a desolate feeling! Can't believe he said to go away and enjoy your life. So frustrating! That's like when Sydney's Dr. was passing us in the hall and we told him his associate found fluid in Sydney's ear a week after he told us she just has a stomach virus and he said "Oh well it could be worse" I wanted to punch him in the nose. I would like to see him dizzy for 2 1/2 weeks straight. Gloria you've been one of the people that has given me comfort on this site and I think of you often and wondering how your doing. Well we have a nice heatwave going on here, one fun thing after another! Take care everyone! Kathy |
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Kathy, So weird about the cipro!! I was just prescribed it for this wicked sinus infection I have. I read it and was too afraid to take it!!!! Does Sydney have an ear infection? Poor gal. I requested my usual Augmentin. It is the best for my sinus/ear issues. I don't have side effects with it! I have had a swollen eye and full ear for a week or more and it has made me kinda relapse. Kathy, I think your both are so brave and I hope Sydney gets some much deserved help. When I said I worry for you guys I just meant that I'd be a mess if it were my daughter that had this. I think you are one great mama! I think doctors are so arrogant and horrible and I hope this new fella will be the one!!! Fix this kid up! Gloria, I'd be so pissed off if I were you!! I fired my stupid incompetent ENT for being a total jerk like that. I want for you to wake up well tomorrow!!! You are a wonderful patient person. The housing market is bad. My folks are trying to sell a house and it is very tricky right now. It will come around when the time is right and you'll get it sold!! BInx, You sound like you are doing really great and I am so very happy for you! Everyone I forgot get great soon!! B |
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Hi Gloria, Seems like you are finally at the same point as I got to with ENT - you finally realise that there is nothing they can actually do for you!! As you know, I have no hope in these so called specialists - I know you have also spent a lot of money trying to find a cure and seeing various people. However, saying all that, you do, like me, seem to be doing quite well. You are lucky in that you are working for someone who knows you and understands your condition and whilst your job is not challenging at least you are getting out of the house and feel like you are doing something. The demands of a 'normal' job where you are expected to meet certain standards doesn't really work for someone with our condtion. Whilst I do get on with my life I would dread the thought of having to work with this. Keep up with your positive attitude and you will be OK. This site will always be here for you like it has been for me. Kathleen - how right you are - we do know more than these so called doctors - most people come away very frustrated. They don't even realise how difficult it is for us to actually visit them. I so feel for your daughter, she is way too young for all this, she should be enjoying herself at this stage in her life. At least I and most people who do get this condition are over 40! She is so lucky to have a caring mum like you to help her through. Take care Sandie xx |
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Hi All, Thanks B, Yeah I wished I would have read about Cipro before I gave it to her. She was on it for a urinary track infection. Geez I thought I had found a good family Dr. Back to the drawing board. Yeah I hope this guy in L.A. will be good, I cant call til tomorrow to see when we can get in as it is the 4th of July here. Damn holidays. I'm due to go back to work in less than 2 weeks and I'm really nervous about leaving her alone.What to do? What to do? I want to know why if dumb me can look up a medicine on the internet and see that it is no good (a little late though) how come a damn dr. can't do the same before he prescribes something???? Yeah B I am pissed off all the time, at the stupid dr.s and the damn drug companies and the greedy insurance co's and it goes on and on. Seriously though I could put on a white coat and be in a Dr's office and do as good as them! Grrrr! Well I better quit before I really get on a roll. Take care All, Kathy |
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Hello to you all , Well I seemed to have slipped back again and am feeling a bit yucky,a bit off balance, wobbly legs and have a very panicky feeling- almost nervous like sensation! sound familiar? Wendy, yes in general I feel okay, but then some strange symptom comes back and you feel nervous as you don't know how bad it is going to get. I hope you have reprieve soon. Gloria you sound like me I think the next time I see the ENT specialist, I will be signed off, I'm also complicated and have too many types of vertigo, I gained another one last time I went! I think he's just humouring me by seeing me in October. The stress of house selling probably isn't helping, are you planning to move far? Take care. Sandie lovely to hear from you, I know what you mean about work, when I feel well I get very excited about the prospect about returning and then I start to feel unwell and feel all the disappointment again. Love to everyone else and yes stay positive and as busy as you can with this, I find that walking is the best for me even though it sometimes feels like a huge effort, my dog still needs to go out. Love to you all Sue xxx |
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Relapses are STUPID!! |
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Hello All! :) Still checking in on here to see how everyone is, always sorry to see all your posts as that generally means things arent so good Seems like a few relapses going on and most of you just resigned to it and trying to get on with as much normality as possible. I'm ticking along overcoming hurdles and anxieties first the flying then Go Ape, Take That concert tomorrow!! then just a rollercoaster and I'm done with that hurdles race!! I have seen the slightest of improvements & decided after seeing my VRT specialist yesterday that I wanted to be discharged after a year of going back & forth every 6-8 weeks I think I will just get better in my own time. Still running (outside) 2 or 3 times a week and gym when I dont, so keeping up the physical exercise has been the best recovery for me. So 18 months ago overnight I was struck with this thing and never imagined it would take this long...... Oh weel no point in moaning just get on & wont let it get in the way of my life, I was 40 last year & my birthday was....dificult, so will be 41 in 11 days & intend to enjoy it a little more!! A lot of it has been about state of mind for me, I am in a better place than last year!! The anxiety & depression has left me (its official after comparing questionairres yesterday to last year) So for me its onwards, upwards, sideways and all ways and although I have some bad days its still better than a year ago. So thats me Lots of love to all of you especially those of you with me from the beginning I couldnt have got through all this without the sharing with you all and think I have made some lovely friends Claire xx |
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Hi Claire Nice to hear from you and glad to see that you are still improving even if it is only slightly! I am sure with your positive thinking you can at least live with this if it doesn't go away - like I do. It is easy to get bogged down with this condition, never feeling at 100% but you do have to keep comparing how you felt this time xx months\weeks ago and you do in most cases find that you have actually improved. Hope you enjoyed the Take That concert. My sister saw them last month in the north east and she said they were fantastic. If you got through that girl you are doing really well! Take care, and keep that positive thinking! Sandie xx |
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Hi All, Well Sydney had a yoplait yogurt last night and I didn't read it before she ate it, and walaaa..... a big ol' panic attack this morning. Anyone relate? Oh I forgot to say what was in it, ASPERTANE!!!! In case your not familiar thats a artificial sweetener they use here in america. Im calling Yoplait and giving them an earful tomorrow. Hope all is well with everyone. Kathy |
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Hello everyone... after having a few good days where I didn't think about this condition for every second of the day, I have now lapsed back into the way I felt the first few weeks! Tired, aching neck, headache, dizzy etc... all because I picked up a headcold! Grrrr... so frustrating as now I remembered what it feels like to feel normal I want it to stay! I'm hoping the cold will be short lived and that I can get back on track, but at the moment am very annoyed with it... I know I'm only in the early stages compared to many of you and should be more positive, so will be trying to channel positivity over the next few days! Any spare positive vibes greatly welcome as I think mine are in short supply! Hope everyone else is having some good times Jane x |
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Hi all...... I'm new to this and sooo glad I found all these comments about labyrinthitis. Mine stared 9 weeks ago with lightheadedness for about a fortnight then on a Sunday evening I had a major dizzy spell along with what I would describe as panic attack symptoms. Felt like I was going to faint, heart racing, panicky, disorientated etc I went to bed that night thinking it would pass but for the next couple of days I remained light headed and had another 2 dizzy spells as I call them. To cut a long story short visited the doctor 5 times and was told sinusitis/ labyrinthitis......... Still lightheaded but the severe dizzy spells got less frequent. Currently on antihistamines and nasal spray awaiting a hospital appointment with a physician!!!!! Other symptoms I have had include nausea,fatigue,weakness, disorientation, balance issues, anxiety, brain fog etc etc. Do these sound like labyrinthitis symptoms as I am struggling to associate all the debilitating symptoms |
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Hi all...... I'm new to this and sooo glad I found all these comments about labyrinthitis. Mine stared 9 weeks ago with lightheadedness for about a fortnight then on a Sunday evening I had a major dizzy spell along with what I would describe as panic attack symptoms. Felt like I was going to faint, heart racing, panicky, disorientated etc I went to bed that night thinking it would pass but for the next couple of days I remained light headed and had another 2 dizzy spells as I call them. To cut a long story short visited the doctor 5 times and was told sinusitis/ labyrinthitis......... Still lightheaded but the severe dizzy spells got less frequent. Currently on antihistamines and nasal spray awaiting a hospital appointment with a physician!!!!! Other symptoms I have had include nausea,fatigue,weakness, disorientation, balance issues, anxiety, brain fog etc etc. Do these sound like labyrinthitis symptoms as I am struggling to associate all the debilitating symptoms with the inner ear and am anxious about my hops appointment thinking it could be so ething serious. I look forward to hearing from anyone willing to advise me. Thanks |
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Hi Jane Any cold or virus will set you back to feeling bad again that's the way with this thing, but don't worry too much as not every virus will affect you. I've had many colds over the last few years which haven't brought about any extra symptoms - I also got the mumps a couple of years back! Yes, the mumps, I was 48 years old and had them when I was young. My GP burst out laughing when I went in to see him! Anyway, I do hope you feel better soon! Matthew, welcome to you. Yes, every symptom you have listed in your post is typical of labs. You are suffering anxiety, as most people do with this condition, because your anxiety levels are controlled by something very close to your inner ear. Have a look at the website link at the top right hand corner of this page www.labyrinthitis.org.uk. You will find loads of info on there along with symptoms. Doctors will tell you that you should be ok after two weeks with labyrinthitis but as you will have picked up reading these threads most of us suffer a lot longer. At this stage you will have loads of horrible thoughts going through your head and thinking it really can't be something as simple as the inner ear which causes all this turmoil, but it really is. Go to your hospital appointments but don't expect a cure! They will give you VRT exercises which you can download from the internet anyway. Get out and do loads of walking, with an escort if your balance is bothering you. Don't look at the ground but move your head around and look at things. This will make you extra dizzy but it is stimulating your brain. Also any VRT exercises you do are designed to make you extra dizzy. They are a way of making your brain ignore the dodgy signals from you inner ear which are confusing it, hence the dizziness. Please ask if you need to know anything. Sandie |
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Matthew...you may want to check out my posts above about Lyme disease. I had a lot of the same symptoms as you. Dizziness, brain fog, anxiety, fatigue, weakness, etc. All lyme symptoms. I tested negative by my ENT and was told it was labs. Yes..it was labs..but lyme was at the root. My ENT was wrong..the test was innacurate. I luckily found my way to an ILADS trained LLMD who did a better test and confirmed lyme. I've been in treatment for 14 months and am 95% improved. Most of my symptoms are now gone including the dizziness, brain fog, anxeity, etc. I still have a few mild symptoms so I continue to treat. Lyme is controversial..the mainstream doesn't think it is a big deal and can be cured with 2-4 weeks of antibiotics. The lyme community / ILADS disagrees. Check the posts above. |
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Hi Sandie Thanks for the reply To be honest I think anxiety is getting the better of me. My main concern is that most people list vertigo as their main symptom but I would say I am more lightheaded and just have a unwell feeling. Although I must admit this last week the nausea has subsided. I hate the feeling of "brain fog" and tiredness it really gets to me. As for my balance it is fine. It hasn't been a major issue all along, I would say my main symptom is 24/7 lightheadedness, ( Worse when in a busy place/outdoors/open spaces) Fatigue, Disorientation, Anxiety, Tinnitus/ roaring/ humming in right ear, wax build up, itchy ear I hate it. It's driving me mad. Betahistine Made me feel awful. Thanks again for the reply. It's really appreciated...... |
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Hi, everyone, I would like to ask you all a favor. I am a believer of the power of positive thinking and prayer. My niece is being born tomorrow and she has a very very serious heart defect that threatens her little life. She has beat some odds already by making it this far and I am hoping to get all of you to think of her and get her farther!! Her name is Ruby and she is amazing and we all love her so so much. She has to make it! I am asking everyone I know to think positive and or pray for her. Thank you so much! B |
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My Dr thinks I'm suffering from Lab but after about three weeks of it I'm finding that my knees keep buckling under me when I try to walk regardless of how fast the world is spinning (mostly the right one) Also my legs just feel kind of jelloey, like they're not doing quit what I'm asking them to do. The new muscle control issues are really scaring me because I can't find anything that would suggest that Lab can cause this and I'm afraid my Dr might be missing something. Has anyone experienced anything like this with Lab? |
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For anyone new to these pages - here's the list of symptoms I experienced with this beast of an illness. Hopefully, it will reassure you that you are not going insane. Everything I went through is listed below in some shape or form. This is the list that I took to my early ENT appointments. � Cold / flu symptoms � Constant sore throats � Face swollen left side (front of ear to jaw line) � Severe neck pain (originally left side only with swelling - now bi-lateral) � Neck / head tilted and not straight � Chiropractor refuses to work with neck as suspects underlying problems (severe vomiting following first visit) � Tinnitus (originally left ear � now both). Tinnitus changes significantly with head movement. Cracking noises. � Loud buzzing sounds both ears (intermittent) � Vision problems (slow tracking) � Feelings of floating and vertigo � Palpitations and feeling that heart rhythm is changing � Fatigue and tiredness � with constant night waking (need for 12 � 14 hours rest) � Unable to watch television � Unable to use a computer � Difficulty reading as words blurring and jumping around on page (black print on white background is worst) � Unable to tolerate noise � Unable to tolerate conversation (more than one person speaking at once) � Unable to tolerate fast motion or busy environments (crowds / traffic) � Unable to drive due to vision problems (still can only drive short distances and not at all some days) � Store lighting and ceiling heights appear to cause problems (ok in some stores but not others) (fluorescent lighting combinations / flicker). � Constant headaches / migraines � Motion sensitivity � Light sensitivity (bright sunlight / car headlights / street lights / television) � Feeling hot (opening windows in middle of winter to cool down) � Burning feet (particularly right foot) � Problems when passing from dark to light areas and vice versa � Feelings of pressure in head and ears � Concussive echo in left ear � Difficulty walking and coordinating / constant tripping (gets worse with distance travelled) � Problems focusing (eyes not adjusting focus) � Vertical double vision (best observed when looking at stars on a clear night) � Increased perspiration � Feeling of internal tremor on waking � Teeth chattering (minor) � Feelings / sensations of anxiety and nervousness (for no apparent reason) � Little or no ability to concentrate for more than a few minutes � Memory problems (could not remember house number or postcode) � Forgetfulness and problems with speech � Problems with writing and spelling � Symptoms always worse in morning and tend to ease as day goes on � At times feel like vision is in 2D instead of 3D � Feelings of �hangover� but without the fun beforehand � Headaches in back of head spreading over left side � Pain around left ear (skull area) � Pains in ears (particularly left) � Atmospheric pressure changes exacerbate symptoms (can tell what the weather is like before the curtains are open) � Eyes feel like they are being pulled by magnets and struggle to focus � Feeling of movement in back of skull / head � Feeling that right leg is dragging (and also that one leg is longer than other) � Intermittent numbness along side of right hand and 2 fingers. � Tinnitus worse on waking or after lying down � Feeling of motion or floor moving after getting off an escalator or lift � Posture blown with deteriorating physical conditioning � Sunlight and flicker through trees whilst walking or travelling in car affect vision and balance � Eyes feel stiff to move / feeling of movement in back of head when eyes move. � Pain behind eyes (particularly left eye) So glad I am now at 99% or there abouts. Matthew if you need a fix with the anxiety rubbish that's pulling you down e-mail me at fiskerton@yahoo.com Really BIG hello to everyone else. Hope my message catches you climbing ladders and out of this thing forever !!! Stay safe (as always) BINX1965 |
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Well, Got my hospital appoint tomorrow. Not looking forward to it but suppose it has to be done. On a lighter note I am feeling better today. I would like to ask anyone reading this with experience of Labs do you think I am on the road to recovery as today the nausea, imbalance, neck stiness, nervous/anxious feeling have gone but I am left with lightheadedness which I have had constantly for 9 weeks. I would like to think I am nearly over this but the symptoms have come and gone before. Any advice would be hugely appreciated Thanks Matthew |
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Matthew, It is entirely possible that you are at the end. My stupid ENT said not longer then 9mo so that is 12 weeks. I'm hoping the good thoughts for you. It happens for lots of people who get this! The symptoms are so broad that it makes one feel crazy. You are not crazy, your ears are failing you. I'm sorry you're here, but it is a good place to be. You'll beat it. B |
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Matthew, I meant 3 months not 9.....sorry. B |
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Cheers B. Feeling better again today and much more positive after hosp appointment this avo. Physician said I'm not showing any signs of a serious illness and confirmed that it is Labyrinthitis that is causing all my symptoms. Wow. Never thought something so simple could make you feel like this. Anyway thanks to everyone who has replied to me in the short time I have been here. Hope everybody gets well soon. Fight till you shine Matthew |
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Hi Matthew Regarding the vertigo, I also have never suffered from vertigo constantly. Over the years most of my symptoms have been constant but when I have a major relapse I do suffer from the spinning type of vertigo. I have had so many different types of dizziness on my journey believe me! Your anxiety as I said is all part and parcel of this but you seem to be doing quite well with the other symptoms getting less and I'm sure this will also leave you soon. The anxiety is not really the kind that an anxious person suffers who has not had labs/VN. What I'm trying to say is that the symptoms are the same but it is something that will leave you as your condition gets better, so try not to worry too much about it, worrying makes it worse! You will feel worse in busy places and outdoors too. For me in the early days I used to love being out in the fresh air but the landscape used to 'bounce' all over the place. Bethahistine didn't work for me either Matthew and doesn't work for a lot of people. The best thing to do is take nothing as this helps your brain to compensate quicker. It's very tough dealing with all these symptoms and it does send you crazy but keep hold of the fact that it will get better for you, it just takes time. Anonymous - yes this all comes under the 'balance' label. You probably realise from my posts that I am a long time sufferer of this condition - over 6 years now. My balance was absolutely terrible in the early days and I have suffered allsorts of symptoms with balance too. Yes, your legs will give way and fell really weak as mine did. Lots of people suffer this and liken it to having 'marshmallow' legs! My problems have come and gone over the years, the worst times would last for months and it really is horrible. Now my balance is pretty good but I still feel weird if I am standing still on uneven ground or on a ramp or if I wear high heels! Best exercise for this is to walk on uneven ground as often as you can. BINX - that's a really great list of symptoms you have posted and I can claim to have suffered from every one of them. The only thing that has been pretty good throughout for me is the memory and concentration, though god knows I don't know how with the weird feelings in my head! Anyway glad you are just about recovered now! Take care everyone Sandie xx |
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Hi, havent been on for quite a while because I started taking stugeron (and stemetil) prescribed by dr and was feeling better, tho still having to slow down walking at times. However, I was in the city centre a few weeks ago, and got a fright trying to get to my bus stop, literally could hardly walk. I got an anti-depressant from my dr, lexapro, last week which then caused me nausea (after only two tablets) and I collapsed on the street, luckily there was someone with me at the time. Taken into hospital, they said that there is nothing serious wrong just labyrinthitis probably. I've been feeling awful these last few days, in bed all of the time, and only feeling a bit better today. I have an ENT apt which was supposed to be moved forward from Sept 1st, but have to wait to see if they will move it forward. Cant believe you could be so ill with this labs. |
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Dear everyone especially new folk, This illness is quite unpredictable and can take along time to recover from, as some of us who have suffered for a long time can say only to well. Keep posting as there is alot of practical help and advice here and alot of understanding, something which is often absent from our so called health care specialists! Love and best wishes to you all and try to stay positive. Sue xx |
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Hi all, Just popped in to say I'm still here - 2 years plus. Loads better but as Claire/Sue/Sandie and others testify it is a roller coaster with the big dips getting further apart - either that or you get used to them! Have had a reasonable spell - house stuff taken over our lives - still zilch - so we are taking it off the market. Too stressful and that is something I don't need. For me it seems this virus also attacked my muscles which apparently can happen and am having to build those up or rather stop them from spasming when they shouldn't and for no reason. At the moment muscles in my legs and the sides of my back keep shortening. It's costing me a fortune in physio bills - can't wait any more for our national health service! So maybe one day there will be a clean bill of health - that will feel strange - what will I have to fill my day then?!!!!!!!!! Have had a bad migraine last week-end so put me off kilter. Back to doing some more VRT. It helps when I need it. Maybe I should do it constantly, but there is a life to live so I do it when things are not too good! As Claire says, there is a time factor in all this that none of us can alter - just a huge amount of patience especially for those of us for whom it has decided to linger longer!! Basically though I'm doing OK - we've booked a week to the western highlands of Scotland in mid-September (are you going this year Sandie?). This was the holiday we were to do 2 years ago when this thing struck. So - here goes again - maybe more lucky this time. Anyway, welcome to all newcomers - I wish you all speedier recoveries. For most that does happen, so do not get dispirited - keep the faith. Sue - so sorry you are in a big dip at the moment - they really are the pits aren't they. Hugs to you. Claire - great to hear from you and your positive attitude - we have to be don't we because otherwise what else? Sit in a corner for the rest of our lives? ABSOLUTELY NOT! Go girl! xx B - read your request for Ruby - will do! Hugs to you to BTW. Binx - how are your days lately - any relapses or plodding along? Good to hear from you. Sandie - always great to hear from you. Hope your 'summer' if we can call it that - is going well. Hopefully a good phase for you too. Jemma - if you are looking in - hope things are good for you too. Will Stay in touch. Love and hugs to all - keep the faith! Gloria xx |
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Hi Gloria So glad that although it has not gone completely for you, you are at least getting some good days! That's what it's like for me. I haven't had a severe relapse for two years now but I still have good and bad days, mostly controlled by that time of the month! For the first four years it was just about constant but since I gave up work things have settled down. You are right in saying that you kind of get used to living with it! Yes, I will be in the Highlands of Scotland this summer. I absolutely love it. The west coast is very beautiful and we have had many lovely holidays around the Fort William area. However, for the last fifteen years or so we have frequented Aviemore as we find there is more to do up there. We went up for a week at Easter and it was one of the best holidays we have had up there because the weather was wonderful. Fingers crossed that we get good weather in the 'summer'. We have had absolutely torrential rain the last few days up here in the N.E. of England. Wellie weather indeed! Gloria, I have a friend who has had the same problems as us for many years - started with Labyrinthitis and ten years later she is still suffering. She has actually been admitted to hospital many times because she is totally decked with the dizziness etc. Anyway, she has developed fibromyalgia and whilst I don't know a lot about it she suffers all these weak 'muscle' things. Her whole body is affected and I know she has spasms too. Could this maybe the same thing as you are suffering. Sorry that your house hasn't sold. Quite a few houses around me are showing 'sold' signs lately but even more properties seem to be up for 'let'. Sad times with the country the way it is at the moment. Anyway, keep that positive thinking going and take care. Sandie xx |
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I thought I was getting to the end of this awful thing until this morning. The dizziness/lightheadedness is much better but not completely gone. When I woke this morning I was really really tired, had a fuzzy head like when you haven't had enough sleep, a little nauseas and a general unwell feeling. This lasted all day but to be honest I am feeling a bit better now 6.30pm. Can't get my head around this........ It's a nightmare. I have been told by my doc it was labs. This was confirmed by a second doctor then was also confirmed by a consultant physician in the hospital. They all say it will pass just stay positive and it will pass in time. It doesn't feel that way. I have returned to work so I am def getting better but I just can't shake this thing completely and get back to my normal going out for a drink/ socialising self lol aaaaaahhhhhh will it ever go away??? |
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Binx, That's an amazing list of symptoms, and almost exactly like mine. It's been 7 months for me now and I am feeling much better, but still have the headaches at back of head, swollen glands, pain in ears and jaw, feeling of eyes being pulled, and some of the other problems as strongly as ever, particularly if I try to get away with skipping VRT. It helps so much to read everyone's posts so one doesn't feel alone in all of these awful symptoms! |
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HELLOO just wanted to drop a line wondering how everyone is doing. i would say that i have had a good 2months everything is at 99%, and my new job in Yellowstone is going GREAT. it helped me get over lab with all the hiking, and working! i was at almost a year with it, and still have minor symptoms every now and then. hope everyone STAYS STRONG, AND TAKES CARE!!!! |
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Hi Sean Great to hear from you and so good that you are at 99% nowadays. Glad also that your job is going well and must say that you are lucky to be working outdoors with this condition as it certainly does help. Keep well! Sandie x |
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Hi, Guys, Thought I'd share that I got so dizzy yesterday I couldn't walk in a straight line. It was weird as that has not happened in nine months. All I wanted to do was throw up! I did my 2 mile walk but it was so awful. I came home, took a pill, and laid on the sofa until it kicked in. Scared me a bit. Saw the neuro last week and she said, "It sounds and acts like inner ear." Ummm...I know, stupid ENT! My ENT is retarded. My new doc said that guy doesn't know what he's doing and his referrals never see him. Too bad I didn't know this 10 months ago. Oh well. Most other days have been ok. I have been struggling a bit lately with symptoms, but I think it is due to stress. My baby niece is in the hospital with high blood pressure. She only got to go home for two nights. It is very hard on my sister. I think on all of us, but hardest on her. Please keep praying. She is so beautiful and amazing. She is destined for great things! Thank you! I hope everyone else is doing well. It sounds mostly good from everyone! Sean, you sound like you're having fun! I always wanted to do a summer job like that. Yellowstone is awesome! Everyone else take great care. Thanks for listening! B |
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Sandie, >>Bethahistine didn't work for me either Matthew and >>doesn't work for a lot of people. Amazing .. I had this giddy spells since 2005 and recently I just got off Betaserc. As I write this, I have just taken Stemetil and hoping it will go away.I am contemplating going back on Betaserc Sandie, what works for you in the end ? Thanks , Henry |
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Hi all, May I know what works for you to control this dreadful affliction ? Thanks, Henry I am taking - Betaserc - Tebonin Ginkgo - Omega 3 no VRT - as I don't it actually helps |
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Keep active. VRT does help, as it keeps your head and eyes moving. But at least walk every day, and try to move your head and eyes when you walk. Ginger tea will help. Massages and stretching. Lots of water and a multivitamin. Vitamin B complex heals nerves. No alcohol. Regular mealtimes. Try to resume daily activities as soon as possible. Be active every day but also make sure to rest and relax every day. Take valium when the head gets really bad. Try not to panic or feel hopeless. Keep busy, it will distract you from your symptoms. Make sure to stop what you're doing every couple of hours and move your head and eyes (don't sit glued to a computer screen assuming you can even tolerate a computer screen). Try to reduce alarming noises and patterns in your environment Re-introduce busy environments slowly. Don't try to rush healing. It will take the time it takes. Don't beat up on yourself for things you feel you should be taking care of that you can't. Be patient. It will get better. |
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Hi Henry I took Serc (betahistine) in the first year of having this condition and at that point in time it didn't work for me. I took it for a few months and felt no different while taking it and no different when I stopped taking it. This happens for many people but for some I guess it works. Are you saying that Serc has actually helped you and you are worse without it Henry? Stemetil actually blocks the dopamine receptors in the brain which is supposed to stop the dizziness but it is not advisable that you take these for any length of time. The reason for this is that it is 'numbing' the brain therefore it is not allowing the brain to actually compensate for the dodgy signals it is receiving from the damaged inner ear. However I notice that you have had this condition for many years, in fact for the same amount of time as me! Do you actually have any good days? Do you have any allergies i.e. hayfever, dust mites etc? I have developed allergies I didn't have before I got labs. This is why I think my condition has lasted so long as I cannot get rid of my allergies! To keep things under control I use a saline nasal spray twice a day. These are brilliant as they get rid of all the gunge (sorry) which helps a lot. YOu have to remember that ear, nose and throat are all connected so keeping everything clear is a good thing. I also take a antihistimine (benadryl) once a day, every day of the year. I use a beconase nasal spray on and off especially during the summer. I find on days when my ears are really blocked this is when I am going to have my worst symptoms. I relieve this blocked feeling by pinching my nose and 'blowing' which relieves the pressure in my ears a little. However, all of this does not mean that I am free of symptoms - I still suffer. The main thing that helps me now is Stugeron, the travel sickness pill. This pill has allowed me to have a life for the last couple of years. It actually settles things down in the inner ear (which is what happens if you suffer travel sickness) and for me makes everything OK. I only use it when I am doing something like shopping in town, or going out somewhere nice or to a gig or something. I do not take it all the time and I do not recommend that you do this but I might also add that it is prescribed for some people with Menieres disease. Please do some research into it before you try it. Regarding your last post, I didn't get right into the VRT either. What I would recommend is loads and loads of walking - that helps a lot. Take care Sandie |
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Hi all, Im pleased to say I havent had an off-balance feeling for a week now, tho still feel very tired and quite down, still (think Im still in shock with the whole thing) Tho it's obviously great no symtoms of labs, except tired. Im taking two Stemetil a day and three Stugeron as directed by hospital I went to. Keep your fingers crossed for me it's cleared up, good luck to everyone on here. |
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Had a guts full of this now. Thought I was getting better and now I'm feeling awful again. Dizzy lightheaded nausea weakness head pounding no energy. It's been 11 weeks. Surely this is something else. Seen 3 doctors including a specialist physician and they all say nothing to worry about. Labyrinthitis Aaaaahhhhhhhh I feel terrible. Need some advice.......... |
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Had a VNG today. Have to say it was not my favorite thing to do. Is done. Hope everyone is fairing well. B |
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So the neuro called my back and told me they think my VNG may indicate that it is more brain related then inner ear. That scares me. I did have that MRI awhile back and it was clear so I don't understand. Anyone else relate? Would anyone mind sharing their results of their VNG? I was just sure inner ear. I think that it may still play a role as I have crackly fluid in there all the time and even pain sometimes. Thank you, guys. B |
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Hi Mary Can I just ask what dosage are your Stugeron pills? Sandie x |
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Hi everyone, new here. I have been dizzy for almost 8 weeks now. It came out of no where, one day felt dizzy in the ba k of my truck where I was sitting next to my baby, next day had a short vertigo attack, literally seconds, woke up the next day with full ears, slight ringing and in such a fog. I have improved since then but I'm no where near %100. I have 3 kids, a 10 yr old, a 3 yr old And a new baby girl who is 4 months. This all started when she was about 2 months and this whole thing has affected me so much. Im usually a multi tasked and a do it all kinda person, plus I feel like I missed out on a lot of time with my kids because of this horrid thing. I have a wonderful husband though, so I'm very thankful for that but he works a lot. I went to neurologist last week because I'm still unsure if this thing caused me to get MAV or if it was MAV all along or just labs? He put me on a 15 day taper course of prednisone, it seems to be helping ( knock on wood) I have had a clearer head recently and my visual symptoms seem less. It's mostly when I go into stores etc. I have seen improvement though so that has to be a good thing right? It will be 8 weeks this weekend. My neurologist wants me to go on Topamax along with the steroids but I'm terrified of the side effects. I hear it can cause cognitive symptoms, I took one pill and felt All tingly in my mouth it was so weird! I have a history of headaches and Migraines run in my family so I keep coming back to the MAV thing. Will keep everyone updated. Its great to find this site, I'm only 27, been married almost 10 years with beautiful babies, I know has God has blessed me and everything happens for a reason, I keep trying to tell myself this all the time. Rebecca |
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Hi All, I have not been on awhile so wanted to give everyone an update. We finally got in to see the otoneurologist in L.A. yest. and he concluded that Sydney has been misdiagnosed with Labs and he said everything she has been experiencing is migraine related. So I guess its migraine related vertigo. At first I was relieved but today Syd said she is not too happy with her visit. He is sending his report to her medicine dr. but he is not a person (the otoneurologist) that does follow ups. So would like to here from everyone about what you think of this diagnosis. Ehhh! on and on, anyone try accupunture??? Take care, Kathy |
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Hi All, I haven't posted for awhile, but I thought I'd give an update. I've had this beast for 7 months now, and am feeling much better. But I still have mostly bad days, interspersed with a few good moments or hours here and there. Pretty bad right now as I have a cold. I also had an MRI head test which came back with lots of spots, but they don't know what it is, and they say it could be anything or nothing, so I have to follow up with that in a few months. Continuing to do VRT, and noticing still that when I get lazy and miss a day I do seem to get more dizzy and nauseous. But it's so hard to keep them up, especially as they hurt my neck, which is already a mess. But doing them consistently seems to be worth it, as otherwise things deteriorate pretty quickly. (I also have slacked off on the walking, which I know is not helping). Indeed, lately almost the worst thing has been my neck. I've head this neck problem ever since this thing first struck right after Christmas, along with screaming headaches, all at the back of my skull. But after all this time even though most of the other symptoms have gotten better, these are as bad as ever. Massage helps a lot but the pain is still almost always there. (I would love to get a massage every day, but can't afford it; once every two weeks is still an extravagance)! My ENT had absolutely nothing to say about the headaches, and insisted they must be unrelated or just tension headaches. But I googled "headache at back of head" and I think I may have "occipital neuralgia," brought on by the labs. Sometimes the pain is so bad it feels like migraine, although I have never had migraine before, and occipital headaches apparently are sometimes mistaken for migraine. I've found that there are neck exercises one can do for this, which I've just started, and that I hope will help. I know other people have complained about severe headaches at the back of head and neck (Gloria, I've been following your story for months, and it seems we have many identical symptoms)! So I thought I'd pass this along. I hope everyone is having a great summer! Love, Anna |
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Hi Rebecca... I started my dizziness very similar to yours..at approximately 2 months after my baby was born. I have this condition for exactly one year 0n Aug. 2nd. I'm so frustrated with this. I'm just not the normal me anymore. I'm 29 years old with an almost 4 year old and a baby girl who's one year and one month. I now develop pains everywhere in my body..like legs, arms, upper back, lower back, neck..tingling, numbness in arms and legs. Still dizzy (not room spinning but wavy), ear pain, headaches and post nasal drip on the left nostril. My PCP is now thinking I might have fibromyalgia. I saw a Rhuematologist four days ago and he's doing a whole bunch of lab work up. I hope to see something wrong..because it's unreal to my family and friends when I keep on telling them I'm not feeling well but I look just fine except for I'm a little skinnier. I hope you recover well. Kia |
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Hi everyone I haven't posted for a while, not really had much news to report so just been plodding along really. I think I am gradually improving although yet to reach the finish line i'm afraid! Anna I wanted to respond to your latest post about the neck pain and headaches etc. You may have seen that I have suffered badly from neck pain which really began a few months into this experience of labs. It is still ongoing and sometimes it flares up worse then it may improve for a few weeks. At the moment I even have intermittent pain around my left rib cage near my heart which i feel is all related. I always have suffered neck pain due to mild scoliosis (curvature of the spine) and probably poor posture when sitting at a desk etc. However there is no question in my mind that labs makes this all much worse. So many people report new neck pains and muscle aches with this. I recently read some interesting reports online about the link between scoliosis and vestibular dysfunction. The idea behind this is because some experts say that everyone with scoliosis has some degree of vestibular imbalance anyway and clearly anyone who has vestibular dysfunction is going to find their posture is affected. There is such a strong relationship between the brain's perception of balance and the way it tells our muscles to respond and therefore our whole posture can adjust itself accordingly. The headaches could be as a result of the tension in the neck muscles and the occipital area or they could be migraine related and then MAV needs to be considered because medication can help with that. If you have just got the tension type pain then I have really struggled to find much to help apart from over the counter painkillers, trying to improve my posture and if really bad a 2mg valium tablet (but that makes you feel drowsy and spaced out). Sometimes you feel like you're going round in circles but hopefully things wil get easier in time. Anna do you have to work or have children to look after? Any stress seems to make everything worse so I hope you can take it easy as much as possible... Hello to all my old friends, we dont seem to post as regularly now but hopefully that is because people are all improving? Oh by the way I saw an interview with the comedian Ronnie Corbett the other night and he mentioned that back in the 1980's he had labyrinthitis. He said he ended up taking tranquilisers and it gave him anxiety about going on stage. I think after the initial bout he felt ok day to day but he continued to feel dizzy on stage when performing for about 10 years after. I thought this was interesting as labyrinthitis is so little talked about or reported in the main stream media. Anyway hope everyone is enjoying their summer and getting closer each day to normality. Love Jemma xxx |
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Jemma, thanks so much for your feedback! I'm pretty sure what I have is not migraines, but occipital/ tension headaches. I never had headaches at all before labs, and the headaches do seem to improve after massages. The scoliosis thing makes sense, as your spine is so related to your nervous system. I know I have bad posture and my neck is probably really out of alignment, and massage has really helped with this, but I hesitate to go to a chiropractor (I tried once, and I had a bad experience). I really do hope the neck exercises will help. So far they are making me more dizzy (which could be a good sign)?? I have not been able to work much since this thing started. I was just about to go into pre-production for a film when the labs hit, and I thought I'd take a couple of weeks off and then make the schedule, but then realized I'd have to postpone it indefinitely until I'm feeling more stable. I work at home now doing various busy work and scheduling, but I can't do that much. Film work involves twelve to sixteen hour days and major stress, and there is no question of taking a day off once the schedule is rolling. Obviously with labs I can't do this sort of work, so I'm working part time and trying to get stronger. But I become more and more sad when I have so many relapses and start to wonder if I'll ever be able to really go back to work. I've spent two years already on this project, and we were all ready to go, but I keep imagining myself getting stressed out on set and having a major spinning episode and being flat on my back and costing everyone a lot of money. I keep testing myself to see how much I can do in a day, but invariably a few hours of pushing myself leaves me very ill, and I have to take a full day to recover. So clearly I'm not ready yet! It's funny, I remember how incredulous I was when in the ER, when the doctor told me it would be two weeks to clear. "Two weeks??" I gasped. I couldn't imagine feeling dizzy for two weeks. Now I've accepted that it's going to take the time it takes, and that I can't push it. It's comforting to read everyone's posts though, and find that although improvement is not linear, it WILL get better. I have to keep reminding myself of that so I don't go insane. I'm glad you're feeling better Jemma, and I hope everyone else is too! Love, Anna |
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Hi folks: Anna..I read your post from August 5 where you mention the spots on your brain MRI and your back of the head headache / neckache. I really think you should strongly consider lyme disease. It can explain everything..the spots (I had them), the dizziness (also had them), the headaches, etc. Babesia is a common co-infection with lyme disease and is famous for causing a labs like dizziness along with a back of the head headache. Ill post symptoms below. Just be aware lyme is controversial and the tests are crap. I originally tested negative and was told I had labs. Then I learned the tests are crap and found an ILADS trained LLMD (Lyme Literate MD) who gave me a better test which showed my labs was caused by lyme, babesia, and Bartonella. I have no recollection of a tick bite or bullseye rash. Rebecca..same to you. The pain / tingling, etc. It all is very lyme like..and did you know that most ILADS trained researchers believe Fibromyalgia is really undiagnosed lyme disease. I have met dozens of folks who were originally diagnosed with Fibro, some for years / decades, and it was really lyme. They got better only after getting proper treatment from an LLMD (Lyme Literate MD) If you would like to learn more..watch the 2009 Oscar Nominated Documetary film called Under Our Skin available on Netflix / Netflix on demand. And also via iTunes and your cable system on demand. Post your story in the medical section of flash.lymenet.org and see how many others have had identical symptoms and have now improved. Me? Im 15 months into treatment my labs which was really misdiagnosed lyme, Bartonella, and Babesia. I havent been dizzy in almost a year and am at about 95-98% most days with only a few mild symptoms remaining (sweats mainly at night, muscle twitches.) I also recommend reading Dr. Burrascanos treatment guidelines, widely regarded as the bible of treating misdiagnosed lyme. http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf Here are some symptoms: Babesiosis 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) 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 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 |
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Has anyone else had the ENG and the VNG done? electric earplugs that click and then cold air blown into their ear?? They found that my left ear is working at 70% less than my right ear. It's been 5 months and I am going into a low again. It is so frustrating. They put me on Phenergan/promethazine and I am supposed to be taking this for 3 months. (It's been 2 wks and I feel the same). If this doesn't work I am supposed to switch to diazepam which is VALIUM!! 3 x a day. How am I supposed to care for a baby and drive a car on valium?? This is supposed to reverse the inner ear's virus they said. Anyone else have this issue? experience/thoughts/positive reinforcement would be wonderful to pass on at this point. Thanks for listening! |
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First attack about 12 years ago, realtively mild, but followed soon after by another with extreme diziness and unable to move around. Eventually consulted GP and he prescribed Serc which works for me tolerably well. Attacks recur every 3/4 months or so lasting from 3 or 4 days to possibly 10 with varying severity, but usually tolerable except for occasional severe attack. Apart from diziness the worst symptom is severe black depression, can't tolerate being with other people, and accompanied by poor sleep. Seems often to be triggered by virus infection, but not always. I am lucky so far that Serc works for me after couple of days. |
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This is a message for Megan. If you can, get referred to a neurotologist, that is an ENT who has specialized in balance disorders Since they found inner ear damage, the treatment of choice by the medical profession these days is physical therapy specifically designed to retrain the brain in the event of an inner ear disorder called vestibular rehabilitation therapy. The problem with taking valium is that it will suppress the vestibular signals and it is highly addictive. In order for your brain to learn to compensate for the dodgy signals coming from the inner ear, you should not be on valium or any other vestibular suppressant. The promethazine is to help with the symptoms of nausea, I guess. As your brain begins to compensate, the nausea will go down and you will begin to feel better. |
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Hello, Megan I wanted to tell you that I have taken Xanax, which is in the same family as Valium, and it has helped me drastically. If you are careful and aware then addiction is not likely. It is said that it hinders compensation, but I don't know that to be absolutely factual. There are people who live by that and are still struggling years later...so who really knows. I know the Xanax makes me able to function enough to take care of my house, daughter, and work very part time. I have improved drastically in the last 10 months, though it is with me everyday and I have set backs every now and then. Don't take a high dose and take it with caution, but have some faith in yourself regarding addiction. These drugs get a bad rep, but if you are responsible you can take them safely and they are wonderful for many issues. They have multi-purposes. Do the the therapy and try the drug. I say if it helps and makes this crap less horrible, then go for it! Good luck. I'm sorry you are having to suffer this. I wish there was a cure. It is frustrating and scary. Ken, I am almost jealous that it is intermittent for you! I hope someday they don't come back. Do they give you any answers? What it is? I'm glad you get relief and I am wishing you fewer and fewer attacks! I wish everyone else well and hope things are going better each day. B |
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Hi again I just wanted to let everyone know about a wonderful book I have discovered which I think will be useful for anyone who has long term vestibular problems. It is called 'Finding Balance' by Sue Hickey. The web page associated with the book is http://findingbalancebook.com/Home_Page.html The author has had a lengthy battle to heal from multiple vestibular disorders and it is about her adjustment to life with a chronic health problem. She is based in the USA but I got a copy of the book off ebay. I haven't been able to put it down so far, I can relate to so much of what she says even though my diagnosis differs somewhat from hers. I think the book can be obtained online through a variety of sources, eg Amazon etc. It was only published in March 2011 so it is very up to date. If anyone has read it or does get a copy please let me know what you think. Sandie in particular I thought of you as I have been reading it as I know you have been suffering for so long with this now. Jemma x |
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Hello everyone, Hoping the ladders are long and the snakes are short (and not very slippery). It's been a while since I've been aboard these pages - just thought I would let you know where I am with this thing. 1. Still some free floating anxiety worse in the mornings then completely disappears. I certainly know this is not real anxiety - it's due to the brains response to whatever's gone bang within the inner ear. Too much adrenaline pumping round again. 2. Bad headaches - at least 1 stinker every 10 days. Migraine like stuff. Back of head basilar type. As well as being draining they chuck my balance and I can be wobbly during and for a day or so afterwards. Perhaps as a final manifestation this thing has now morphed into MAV. 3. Tinittus in left ear comes and goes - not sure what makes it better or worse. Lying down certainly doesn't help things as it's always there in the morning when my eyes pop open. 4. Think I am sensitive to atmospheric pressure changes. It's not high or low pressure specifically that causes a problem - its when the needle swings rapidly from one to another. Don't know if this is because I'm a migraine candidate now or it's pressure in the inner ears not equalising fast enough. 5. Been completely med free for about 5 months now - although still glancing at the valium bottle from time to time. There's been a couple of occassions when I've felt tempted - but managed to stay strong and resist! Got another appointment with neuro in a few weeks so will be on the case with all of the above. Obviously i'm a 1000 times better than I was at the start of this rubbish in mid Dec 2010 - but would still like to crush / lessen the remaining symptoms as much as possible. Stay safe (and up the ladders) BINX1965 |
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Brad, Thanks for your concern, but I've looked into the whole Lyme thing and I'm fairly certain it can't be Lyme. One telltale sign is that there are no Lyme-literate MDs in Southern California, where every other type of alternative practitioner can be found in droves. I've looked it up and there has not been one confirmed case of Lyme in Griffith Park where I walk. Also, I know that there are all sorts of things that can cause false positives (10% are false positives). But I'm so glad that you were diagnosed and you are improving. Megan, I had a VNG test and also was told that my left inner ear is 70% gone. I was prescribed valium too, but only take it sometimes at night when the head gets really bad and I can't sleep. I still get the searing headaches, lots of neck pain too and nausea, and bright lights and movement make me very ill. But VRT definitely seems to help, as do walks in nature and herbal teas and massages and aromatherapy baths and stretching. I think valium 3x a day sounds like too much. My prescription says the same thing, but 3x a day would be addictive and somewhat incapacitating, so I wouldn't recommend it except as a sleep aid. Jemma, are there any tips from the book you read which seem particularly helpful in coping with the symptoms? Love, Anna |
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Hi all, Jemma, thanks for that link, have gone ahead and ordered that book. Sorry to see you are still posting on here. Haven't posted for ages, plenty has happened since, good and bad, but I'm going through a pretty rough relapse at the minute. A question for Sandie if she's still about - how long can your relapses last? Weeks? Months? There's probably no definite answer for that as it varies from person to person, but after 2 and a half years, I wasn't expecting this. The most frustrating part is still no diagnosis, doubt I'll ever get one at this stage. Shirley, Claire and Gloria, fellow long termers, I hope you are keeping well and improving? Gary. |
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Well Hello fellow 'sufferers' new and old, Hi Gary, I am the same as you really I am ticking along with now probably monthly relapses lasting around 7 or 10 days, sometimes worse than others, worst time of day for me is still late evenings and when i get into bed. Its been 19 months for me now so pretty used to coping with it. One thing I have to tell you all is that I conquered another hurdle........I went on an upside down, forwards backwards spinny rollercoster!!! and I survived!! :) I was absolutely fine I was luckily at the time not having a relapse so felt confident enough to just go for it. One thing I have learned through all this cr*p over the last 19 months is that I have never ever let it stop me doing ANYTHING. I am now running 3 miles every day and keeping really fit & active. I have the odd drink if I feel like it I even have 1 coffee every morning now. I basically am living my life with an annoying little creature who every now & then fires up and makes me feel dizzy/foggy brained (you know the score) but he never stops me doing anything. I'm 41 with 2 (1 almost) teenegers. I dont have time to be 'ill' I know if your at the start of this you probably cant imagine ever feeling 'normal' again, I think I have now accepted that I have a new 'normal' and thats okay. Please try to just get a grip on this horrible illness/condition and just say 'to hell with it' Yes I feel bad today but tomorrow I hope to feel better and if not then the next day or the next...... lots of love to you all and my 'long term' friends who have helped me so much with this over the last 19 months Claire xxx |
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It is very nice to hear from you, Claire! You inspire me. I love your can do attitude? Are you able to work full time? That is the main thing I want to accomplish, but can't yet. It is good to hear your story every now and then! I aspire to have a cocktail soon. Oh how I miss a nice cocktail once in awhile! I hope you wake up well very soon. I find that this burden changes sometimes. I was doing quite well for awhile and now it has changed, relapsed I guess. I can still function, sorta medium, but there are days. I was in Seattle with my family and we walked in the heat, I have trouble with heat, then we got on the elevator at Pikes and my world turned upside down. We were quite far from the car and it was very icky. My superstar daughter firmly grabbed me under the elbow and I held on to her good and tight. My parents rushed around to find me water and everyone was a smidge frantic for a few minutes. I was calm, just white lipped and white faced. I think it frightened my family because they have never seen it like that before because we don't live in the same town. I didn't want to ruin the whole families outing so my wonderful daughter walked me all the way down the hill, nice and slow, back to the car. She wouldn't let me go alone. We cranked on the AC in the car and I got better. I was even able to continue on with the day. I won't soon be in an elevator like that one or let myself get too hot. I was afraid to be far from the car after that for the rest of the vacation. I did rather well. I think stress takes a major toll on this condition and there has been plenty of stress lately. I got to meet my lovely niece Ruby while in Seattle and she is an amazing child. You'd never know her heart is too big and her BP high. She is happy and wonderful. I had a nice time. I guess that is all I have to tell. I want to be better so badly, but don't we all. I have things to do and need to get back to my career path so I hope to get it together soon. I still work very part time and never miss a shift and even pick some up when I can. Of course my daughter helps me do it, but school is starting and so I am going to have to go it alone! I was hiking everyday, but have been not doing so good lately. I'm going to work on that. I wish I could run everyday, but that seems impossible! Great job to those of you that do. Here's to good health to all! Take great care. B |
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Hi Guys It's me, Ashley. I'm struggling to log into facebook for some strange reason! Anyway it's been a very long time since I commented on this site but I check in regularly to see how you are all doing. It's nice to see that some of my fellow long term suffers are seeing good improvements. Love to you all! To all the newbies, you won't believe it now but it does eventually get better. I thought I would post as I remember when I was at my worst what gave me hope was seeing long term suffers on here say that eventually things do get better. Sooo.... Where am I with this terrible condition/illness? Well I'm not a 100% there yet but I'm doing so much better. I haven't conquered the holiday abroad or rollercoaster like our brave lady Claire!! But I have made some achievements of my own. I have been on a few days out/ mini breaks in the UK and coped pretty well. I now drive all of the time and long distance too. Been a passenger for a long period of time can still make me feel a little off but I'm hoping that will improve. I have conquered the problem of supermarkets; the only time they can make me feel a little off is when they are ridiculously busy on a Saturday afternoon when everyone has trolley rage! But to be honest I think that can send anyones head swirling after a while. I went to see Take That in concert in June and that was brilliant! I was really vervous about how I would cope with it but I put my ear plugs in and danced the night away! But my biggest achievement to date is starting back at work. I am currently doing a phased return to work so I am not upto full time yet but I'm slowly easing back into it and it is the best feeling ever. Don't get me wrong it's not easy some days but I am so proud of myself for doing it. I know I am nowhere near out of the woods yet. In fact I was almost scared to write this post because I felt like I might be jinxing myself but I'm just trying to take each day as it comes. I still probably have some degree of dizziness everyday at some point but I am just thankful that it is not unbearbale 24/7 like it used to be and if it is to the point where I can just ignore it then that is great. I still suffer terribly with my neck and I was never a headache suffer before but boy I am now! I also still experience tingling and numbness from time to time and most of all I still have a big problem with anxiety but I'm working on beating this now too. One piece of advice that I would like to give the newbies is don't lie around in fear of it. I probably spent the first 6 months of this illness practically in bed because I was so afraid of it and looking back it was the worst thing I could have possibly done. I sometimes think now that I would probably be better then I am now had I not lived it fear of it for so long. To everone on here thankyou for your love and support. Everyone helped me through this. In fact you still do! When I'm having an off day I come on this site and it makes me feel so much better to know I'm not on my own and there is hope that I will get better. Take care everyone and have a fab bank holiday! Love Ashley xx |
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Hi Everyone, I just thought I'd share something. I've had a feeling for a long time that in my case the labs may be systemic and involving other problems, so I'm trying to eliminate certain foods to see if that makes any difference. I'd already given up alcohol of course and I stopped coffee even before I got the labs, but now I've stopped dairy and gluten just to see what happens. I stopped the diary a couple of weeks ago and I didn't notice too much of a difference, but the moment I stopped gluten I felt intense withdrawal symptoms, almost as if from drugs, along with cravings that were through the roof, and no matter how much I ate I felt I was starving. (And I know it was the gluten and nothing else, because I was still eating a piece of toast in the morning, but it was gluten-free toast instead of whole wheat toast). My face broke out, which has not happened in years, and I felt extreme fatigue and malaise. Now I have flu-like symptoms, such as runny nose etc. I've read that if you get withdrawal symptoms from stopping gluten, it means you are addicted, which in turn means you are probably allergic. The theory is that if you are not absorbing gluten properly then it goes into your bloodstream and creates peptides which have opium-like effects on your brain. And the withdrawal does actually feel like a withdrawal from something like morphine. It's been a few days now and the withdrawal symptoms aren't quite so bad, and also I've noticed that I'm sleeping deeply without taking a valium, and I think - I'm not positive, but I think MAYBE- the dizziness is getting better. Last night before bed I actually had a sense of well-being that reminded of how I felt before this whole thing hit 8 months ago. I can still feel my ears cracking, but it also feels as if they are draining in a strange way. I will give an update when I'm further along - it's too soon to tell yet what the effect of this change will ultimately be, but it would be great if all along it's been an allergy problem and if I can get rid of it by watching my diet. I'm also trying to cut sugar and yeast. In the meantime, here's something that was written by Harald Gaier, a naturopath at the Allergy and Nutrition Clinic in London that supports this notion: "In my clinical experience, vertigo can be caused by malabsorption, usually due to a gastrointestinal dysfunction such as hypochlorhydria (not enough stomach acid) or too little pancreatic juice. A fungal or parasitic infestation, or an imbalance in the usual gut flora can also lead to malabsorption and/or lncreased gut permeability. An allergic response can cause a rupture of fluid in the labyrinth that can paralyze the vestibular nerves. High-resolution scans show narrowing of these passageways (possibly due to allergic swelling) in a significant number of patients with labyrinthitis. Other, often overlooked causes include organic illness (such as diabetes, hypothyroidism, or hypoglycemia), drug side-effects (such as methyldopa, phosphatidylcholine, procainamide or propranolol), alcoholism, 'caffeinism', sugar-dependence, so-called 'masked' food allergies, toxic environmental exposure (such as to the solvent dioxane) or withdrawal syrnptoms (such as from stopping smoking). An abundance of evidence supports the role of allergies in labyrinthitis and Meniere's syndrome. Although conventional medicine mainly blames salt and advises a salt-free diet, naturopathic medicine considers salt, gluten, caffeine, fried foods, alcohol and drugs to be possible culprits that should be removed from the diet." Love, Anna |
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Anna, very interesting, but would that cause sudden onset with 27/7 dizziness? I wonder. I do believe highly in the allergy theory. Allergies make mine so much worse. The more crackly the ear the more off balance and horrible I feel. I hope the elimination works for you. I tried giving up caffeine int he beginning for 5 months, but it made no difference so I took it up again. I need my caffeine. I also cut down on salt, but no difference. That is the best I did with the elimination process. Keep us posted on your progress. GOOD LUCK!! Ashley! I was thinking of you and wondering how you are getting along. You sound wonderful!! Back to work is so awesome!! Have you been doing any therapies or treatments? I'm very happy for you!! Pop in now and again to share your great story!! I'm wondering how Sydney and her mom Kathy are doing? Any better? Any answers? I'm thinking of you!! I hope everyone else is finding some hope and relief. It one h*ll of a roller coaster ride and not in a good way! Best of luck! B |
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Hi B, No, allergies would not cause sudden onset. But the allergies may have caused a sinus infection (I had a bad sinus infection for a month before the onset of labs), and the sinus infection may have caused the labs. I'm really hoping this diet helps. But I was wrong about the dizziness subsiding. I had a couple of good days, but now the dizziness and nausea are as bad as ever. Oh well! Anyway, the elimination diet can't hurt, and may eventually help. I'll update soon. Love, Anna |
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I'm sorry, Anna. I know how frustrating this is. It is life altering and few people understand. You will have better days. I'll be thinking of you! I have no idea what caused mine, but I had small dizzy spells for almost a year before it was "permanent". I think a sinus infection would do it. Any infection, big stress or whatever else the theory is. I wish the medical profession knew more and could help more. Keep us updated. I hope you feel better very soon. B |
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Hi folks: I thought I would past an update. As many of you know, Lyme and related co-infections were the root of my Labs. Ive been treating lyme & co for about 15 months and am about 95% back to my old self, but still have a few odd symptoms. Something interesting has recently happened. I recently started treating the co-infection Babesia. Specifically Babesia Duncani or WA1 as it is often called (the original name.) Babesia is a malaria-like blood parasite that can cause a variety of symptoms such as sweating (including night sweats), chills, stiff neck, air hunger (Cant get a breath), muscle aches, headache, and very often a tippy, off-balance feeling as if you are floating, etc Most of my tests were negative, but I did get one where there was a slight weak positive, so we are treating. Anyway..since I started treating Babesia, there has been a bit of a flare of my labs symptoms. The dizziness has returned a bit, particularly when Im in stores. It doesnt bother me as I know what it is. But I thought it was interesting that my dizziness has returned for the first time in over a year when I started treating this bug. My treatment is 500mg of Zithromax / day plus 3 pills of Malarone (250mg/100mg dose) 2x / day (6 pill / day total). I also take Artemisinin. Soyou folks may want to get checked for Babesia. Problem is, the tests are garbage as usual. Babesia only affects a very small percentage of red blood cells so it often isnt visible under a microscope (think needle in a haystack.) Plus there are upwards of 24 different strains of Babesia that can affect humans, yet we can only test for Babesia Microti and Babesia Duncani (WA1.) In terms of places to get tested, there is the following. IGENEX: www.igenex.com (Babesia Fish and Babesia IgG and IgM tests) Labcorp: They actually have a decent Duncani test. Labcorp will be covered under insurance in the USA. The test # is 807177 and is called the WA1 IgG IFA Antibody. They send this out to Focus Diagnostics. Quest has a decent Babesia Microti test. So..for those of you with sweats, chills, stiff neck along with the dizziness. I suggest checking for Babesia. FYIit can take upwards of 8-12 months to clear. |
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Hi, Everyone! I thought I'd share my newest adventure in the dizzy BS of everyday life. My neuro thinks it's migraine related due to my history and lack of anything else to call it, so she prescribed me a beta blocker called Propranolol. I was afraid to take it, but finally did. We'll see I suppose. It would be awesome if it fixed it. I am doing pt for my injured knee and the my pt's very best friend happens to be a vestibular specialist a couple hours away. They have been communicating about my and she would like to see me. She thinks it sounds like both inner ear and brain related. I feel like I have some good people trying to help me now which is a very nice change. I'm thinking of everyone!! How's Wendy? Can't wait to hear! Have a great day. B |
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Hello to All Labbies Hi B, how are you doing. Exciting news about your pt trainers friend being a vestibular specialist. Please let us know how you get on and to get advice from a specialist that may actually understand what you are goung through. Hope your knee gets sorted, all these problems we have must be a bit of old age! How is your daughter now, hopefully making a recovery. Im much the same, good days and bad days. I am trying to do more now because you have to get on with it, but I cant deny its hard sometimes. I am finding it is the frustration that gets to me more than anything because it is an illness that takes such a long recovery and other people just seem to think i should be ok now! I give up telling people now as they have no understanding of it as I look so 'normal'. Still get the unbalanced feeling more or less everyday,fullness in my ears, they really bother me, extreme tierdness, you know all the rest!, but I dont get so many headaches now or trouble with my neck, hopefully a good sign. It seems like you a few people on here have issues with migranes. Hope the new drug works for you. All the best to you B and wishing you much better days ahead. X Gemma, have nearly finished the book Finding Balance, very good, have only got a few more pages to go. Couldnt put it down, although I did feel envious of all the care she was getting with all her Doctors, nothing like that for us. Hope you are still making progress. Any new Lulu Guiness handbags lately? Claire and Ashley, good for you both with all your progress. Good luck being back at work Ashley, really envy you but dont over do it. At least it is a step in the right direction. Am glad labs doesnt stop you doing anything Claire, this illness requires that sort of attitude, show it whos boss! To everyone else who posts on here, hoping you are all having more good days than bad, think that is the best we can wish for at the moment and to make the best of them. Much love Wendy XXXX |
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Hi, I haven't posted on here in a while. I am glad to report that for the past few months I have been symptom free. That is until a few days ago!!! We went up to Boston for a long weekend and bam the swirly head, spacy feeling with the floor moving all hit me. HARD!!! So I have been plowing through my days with this spacy, swirly headed feeling. Two years and 4 months people!!!! It hasn't been the whole 2 years, it comes and goes. Cross your fingers that this blip is short. Gloria, Jemma, Claire, Sandie...how are you all? Keep the faith, Melissa |
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Hi everyone So glad to hear people have found that book recommendation useful. I read it within a day. I lent it to my mum so she can have a better understanding of the condition. She hasn't read it yet though. I guess for those who aren't suffering, it doesn't have the same kind of priority as us sufferers!!! Wendy nice to hear from you. Glad you are improving even if it is slowly. I had a really bad couple of weeks. You start to panic you are going worse but today has been better so I am praying it was just a relapse and things will be on the up soon. You are so right about the lack of treatment for us. Reading that book, it did make me wonder if I had secondary endolythic hydrops she had but of course it is all so complicated and the tests are so hard to get done over here I don't think they would ever find out! No new handbags unfortunately!!! however it is my 30th birthday next month so I am hoping for some nice treats then. I never thought I would be dizzy as I turned 30! Hopefully i will be in a good spell then so I can enjoy a nice meal out. B your therapist sounds helpful. I hope they are able to give you some insights that improve things for you. Claire so glad you are getting on with it and improving. Do keep letting us know how you are doing. Ashley so nice to hear from you. I have thought about you many times since you first went to Nova Mullins. Did she help you?? Are you still visiting her? It sounds like you are doing well, so pleased for you!! Sandie, Gloria not heard from you for a while. How are you?? Love Jemma xxx |
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Ok, so it started out as "Viral Labs" then I was told it was "Bppv" now I am officially diagnosed as "Vestibulopathy". Has anyone else been told the same? What have they put you on? This is an inner ear and balance doc. He is an Otologist. The best in Central Florida, so I know I am going to a good doc, but I just can't kick it. I am moving from promethazine to valium now. Ugh... can't imagine taking care of a baby and being on valium. I am going to be a walking zombie! Anyone else out there have the same diagnose? Good luck everyone and hope you are feeling better each day! Megan |
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Hi, Just updating here. I've been on a gluten-free, dairy-free diet now for a little over two weeks, and this has been the biggest improvement I've seen since I started doing VRT. The main differences are, decreased anxiety, decreased severity and frequency of headaches, clearer thinking, and much better sleep. The sleep thing is interesting. Apparently as much as half or more of the population may have undetected gluten sensitivity, and it affects us in all sorts of ways including causing migraines and neurological disorders, lowering immune response, causing allergies, and disturbing sleep. Apparently the peptides in gluten can inhibit a natural substance the brain creates called "GABA" that relaxes the brain and creates valium-like effects. So lately my sleeping feels as if I'm on valium when I haven't taken anything! I'm certainly not out of the woods yet, but I would recommend to anyone with headaches, anxiety, or trouble sleeping that they try eliminating gluten and dairy for a couple weeks and see if they feel differently. Unfortunately the ear thing isn't budging that much - I still have the nausea, the lightheadedness, the sensitivity to head movement, the weird pain, etc. - but the head and neck pain is admittedly a little less, and having some of those other things improve has helped a lot. If anyone tries it, let me know if it worked for you. It's not as hard as it sounds. I'm eating gluten-free pancakes and bread, rice noodles, rice cereal with rice milk, etc. I'll update again soon. Love, Anna |
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Megan, "vestibulopathy" is just a general term meaning that the vestibular system has some injury or some way it is not working as it was made to work. Someone whose condition started with viral labs could have this diagnosis as well as someone with vestibular neuronitis, etc. I think you mentioned that your ENG showed that one ear functioned less well than the other one. Anyway, I would ask your doctor to refer you to vestibular rehabilitation therapy. If he won't, then find someone who will. VRT is the best treatment for lingering damage from labs, i.e. vestibulopathy. |
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Its wildfires season here and the valley we live in is filled with smoke everyday. It is rather awful on the dizzies, sinuses, and eyes. I've never been so excited for snow. =( B |
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*RANT WARNING* So I am usually the positive one but after 20 months of this, with endless trips to the doctors (at first) a final private consultation followed by caloric, eng tests then a referral to VRT therapists,I have seen some improvement. However the last couple of weeks I have relapsed, no idea why but very dizzy/pressure/swirly head especially in the evenings and as soon as I lie down. All this has coincided with a trip to see a clinical scientist (or some title like that) to apparently rule out BPPV. I tried to tell them I dont have BPPV I have had those tests about 5 times now the result- No BPPV! Anyway had a moany,desperate chat with this so called scientist today to try and get some reassurance on the slow progress and what did I get.........."Go back to your GP" AAAARRRRGGGHHHH!!!! I give up. Anyway hope this blip subsides soon and Rant over Love to you all Claire xx |
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Hi Mellissa and Jemma, I'm still here and still not too bad with it all! I have had such a busy summer. Went on holiday for two weeks (Scotland) and my two oldest have left Uni and are living at opposite ends of the country. My daughter has been based in Edinburgh throughout her studies and has decided to stay there so a few days up there for her graduation was all that was needed - not too stressful. But my son has started his new job down in London and what a nightmare that was trying to get a flat sorted and getting him down there and moved in - stress, stress, stress! But they are all sorted now and my youngest is back at school so I can take a breather! Jemma - I forget at times how young you are and feel so sorry that you have had to suffer this for so long. Mellissa - I think your little trip has probably triggered this relapse. I think your brain gets used to doing what you do every day and anything different sets it off. It's well over 6 years for me with this condition and unfortunately my sister who is 8 years younger than me has just started to experience it. She's had it for about a week and has been feeling better the last day or so - I do hope that she is not going to suffer as I have done. I suffered similar symptoms to what she is having now for about 6 months before it really got bad, so I hope the same doesn't happen to her. I also have two cousins and an aunt who have suffered it too. Claire - I feel your anger - it's like talking to a brick wall communicating with these so called experts. I gave up the fight a long time ago! I ended up feeling that I knew so much more than them and as for GPs - forget it! Anna - I have been of the belief for a long time that my allergies keep this thing going for me. I have sinus problems, asthma, and I do have sensitivities to certain products. The asthma was very mild before I got Labs and I didn't have any allergies of note. Funnily enough I started to drink Green Tea about ten days ago and it did not agree with me one little bit - it really upset my stomach and I couldn't keep off the toilet. I tried it for one week thinking my body would get used to it and during that week my face broke out in three huge spots. I have never suffered spots like this! I have stopped drinking it and my stomach is back to normal and the spots are fading! Trust me to have an allergic reaction to something like that! LOL. Anyway, everyone, take care. Sandie |
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Hi all. Almost a week without a post on the site, it's gone very quiet here lately, I guess that's a good thing! Just a message to Jemma to say that I finished that book that she recommended last night, it was a good read, and I could relate to a lot of what she said in the book, which makes me think it's definitely some sort of vestibular disorder that I have, rather than something wrong with my brain. A couple of things that stood out for me in the book - she must have been loaded to be able to afford all the help and support that she got from her doctors over the 10 years, as medical treatment I'm guessing isn't cheap in the US and secondly the support she got was really good, a full set of tests and quick and accurate diagnoses. I have yet to get a definite diagnosis, my ENT said to "wait and see how it develops", sorry but that's not good enough. I'm heading for 3 years with this crap and while that's not long by some peoples' standards, it's long enough to forget how it was to be healthy, to wake up in the morning and have a day where you're not affected in the slightest by any of the symptoms. So I'm thinking of heading to the UK or the US next, we don't have any neurotologists in this country (Ireland) so could anyone suggest a good one in the UK? Sorry for the rant, but I'm feeling a bit rough at the minute, this latest relapse is nearing the 7 week mark now. Thanks, Gary. |
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Gary, I know what you mean. Some days a person just loses hope. It's hard not to be negative sometimes. I've only been sick constantly for one year and I had dizzy spells the year before that. It seems like forever to me and has stopped my life from moving forward. If only someone could save me, all of us. It is not something that someone who is not dizzy can understand. It is life altering and awful. I'm sorry you have been sick so long and feel like your care is sub-par. I live in the US and I feel like I have not had great care either. I just got hooked up with a few great people the last few months. My Dr actually told me he is sorry he is failing me because I am not getting better. It is frustrating for all of us I guess. I haven't read the book as I cannot afford anything anymore, but it sounds interesting. I have a good neuro in the US if you decide to come here! =) This whole thing sucks. I'll be thinking of ya Gary! I am going in for shots into my muscles for nerve pain, but I'm guessing it is totally unrelated to the dizziness. I hope everyone else is doing well. I'm wishing us all good health again. B B |
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m 23 years old Male I'll keep it very short. 29th of July i had Tonsillitis I thought like always that it would go away naturally but just in case i made a appointment with the doctor to rule out a bacterial infection. Next day Monday August 1 i woke op and i had this feeling like i was high on drugs or something, or a bit tipsy i got scared and went to the first aid and they said that it was all in my head and i needed to let the infection in my throat heal. Went back home feeling surreal like I'm not here in this world but somewhere else. Next day i went to my doctor who said that my swollen lymph node and tonsil is giving some pressure to my ''Organ Of Balance'' in my ear or also known as ''Vestibular'' and it will go away in 2 weeks and i got some Antibiotics. After the 7days antibiotics my tonsils and swellings were gone completely but my dizziness was not gone at all! And then on August 19th i also got Tinnitus in my left ear and i now also have them in my right ear as well! To make it all short i have had a CAT Scan of my brain which was negative, i had a Balance test where they put me in a chair and sprayed water in my ears etc which also indicated that i don't have any damage in my inner ear, also did a hearing test before my tinnitus started and it was perfect, also had another hearing test with my tinnitus and my hearing is still good! Now my ENT guy doesn't know what it is! He gave up hope and told me i should wait more and see! I can;t believe i have this! Also it can't be anxiety because for the past 2-3 weeks i have been going outside laughing with friends etc and putting hope up because i taught it would get better. But today after hearing that even the ENT guy can't help me i got desperate and started crying and I'm so afraid that i will have this for the rest of my life! I have feeling of fullness in both my ears and sometimes i get this pain in the ear like a stabbing sharp feeling, and one doctor said that both my eardrums are a bit ''sucked in'' and that it could be a dysfunction of the Eustachian tube and i got a nose spray that i have been trying now. The weird thing is i can move around jump and do everything but it does not my dizziness allot worse, just a little, i have this spaced out...surreal...tipsy feeling constantly and i never experienced vertigo. The closest i got to vertigo was in the beginning when i had panic attacks over this and anxiety i felt like i was going to fall trough the ground and had this weird pressure on my head that made it even worse. Now i can control the anxiety so i don't have that anymore but the dizziness does not stop! It has been 7 weeks and 3 days and still no improvments! Will this ever end?! will i ever feel normal again? Will my tinnitus ever go away?! Please help! Sherry |
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Hi Gary, I don't know whether I should be saying nice to hear from you or not as the case might be because obviously you are suffering again. You asked about my relapses in your post and you are right - the time varies. As you probably know I am into year 6 with this. However, the last year for me has been so much better than the previous five. I saw an article a while back that stated 5 years as a 'recovery' timeline and indeed that has been the case for me, although I am not yet fully recovered. For me, it went like this, as far as I can remember! Mild dizziness started in October 2005 after a really bad flu type virus (first time I have lost my voice). That lasted until the following March when it hit me big time. For the next six months I couldn't walk unescorted, as I had serious problems with dizziness, balance etc etc. It took so long to get referred to ENT and by the time my appointment came round I was back at work albeit not recovered completely. I still had a problem with my balance although not as serious as it had been and I was diagnosed with Vestibular Neuronitis and given VRT. I had been back at work for a couple of months and was starting to feel quite good when 'wham' it hit again from nowhere. This relapse lasted for only two weeks and I was back at work. My next relapse lasted for 4/5 months and again I was off work. When I talk about relapses I mean that I literally cannot do anything during those times. I cannot go to the shops, work, or go anywhere, I just exist! My memory is a bit vague but I did have another relapse which lasted months. My final serious relapse was about two years ago and was the longest lasting. It lasted for about 8 months before I began to feel better. During this time I decided that I had to leave work as it was a vicious circle for me. I was going to work, coming home and would be in bed for 6pm as I was just unable to cope with it all. Yes, I was all smiley and worked hard but no-one knows the hell you are going through. Now, Gary, whether it is because I do not now work and I'm not putting so much pressure on myself or whether it was going to happen anyway I haven't had a serious relapse since. I am not saying I am fully recovered because I am not and I do have some terrible days but life is a lot better for me. I also discovered that Stugeron helps me a lot. I only use it when I am going into town or somewhere that I know is going to increase my symptoms but hey, I am still living and enjoying life! I still live in hope that one day I will be completely free! I am so sorry that you are feeling so bad Gary but things will get better, it just takes a lot of time. I have done a quick 'google' and come up with these neurotologists in the UK for you. http://www.spirehealthcare.com/Cambridge/Our-Facilities-Treatments-and-Consultants/Our-Consultants/Professor-David-A-Moffat-/ This lady seems to have a very good name: http://www.ucl.ac.uk/ear/research/luxon Hope this helps. Take care. Sandie x |
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Hi Gary Just replying to your latest post, you do sound fed up. I am sorry you are still relapsing three years down the line. I am at 2 years and 5 months now. Better than I was but not fully recovered. I had a relapse for a few weeks but seem (touch wood) to be out of the worst of it for now!! Glad you found the book I recommended useful. The author was diagnosed with, amongst other things, secondary endolymphatic hydrops which seems to be responsible for a kind of relapsing effect a bit like you and Sandie are describing. It also seems to be affected by things like diet, movement and baromic pressure which many on here have described. Gary I do hope you can find someone to help you and don't think you will need to travel as far as the USA. Here is a list of the best vestibular experts in the UK that I got from Guestbook page of the Emma/Isla Labyrinthitis site: Dundee, Scotland: Dr John Irwin Bolton / Manchester: Dr. Dolores Umapathy, Dr Veronica Kennedy Nottingham: Dr Thomasina Meehan Cardiff, Wales: Dr Deepak Rajenderkumar Portsmouth: Dr Peter West Medway, Kent: Dr S Surenthiran London: Imperial: Prof Adolfo Bronstein St.Georges's Tooting: Dr B Ceranic, Dr Raglan RNTNE: Dr Palaniappan, Dr Bamiou, Prof Luxon NHNN,Queen Square: Dr R Davies, Prof L Luxon The VEDA website is a useful source of information too although again perhaps more aimed at the USA rather than the UK. I hope you find the above useful, I am not sure which area is easiest for you to travel to. When you have decided you could ask for a referral direct from your GP maybe... Sandie so glad you are reporting a definite improvement at the 5 year mark. I too have read that as a time for recovery so fingers crossed it is for all us long termers on here! Sherry your post sounds very familiar. In the early days all the symptoms you describe are typical of labs/VN. Many of us had the ENT tests and they came back normal. You may be told that this means there is nothing wrong but it isn't the case. Any doctor with a proper knowledge of vetibular disorders will tell you this and will base their diagnosis on symptoms and not just the test results (which are notoriously inaccurate and limited). I would recommend you see a neurologist or neurotologist as a next step if things don't improve in the next few weeks. I can certainly say that your symptoms sound similar to mine in the early days of this. Hang in there and if you can read back the old posts/pages on this site it will give you a very good idea of what this is like and how to deal with it. Take care! Everyone else, hope you are all on the up??... Jemma xxx |
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Hi Jemma, Thanks for your reply i wanted to ask if the tinnitus will ever end? |
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Hi Sherry Sorry to hear that you have this dreaded condition. As Jemma says you are sounding very typical of what we have all suffered with this awful thing. Try and do some research on Vestibular Neuronitis as usually without hearing loss, you are put into this category. Labs and VN are pretty much the same and doctors don't really distinguish between the two. Just to reiterate what Jemma says also - these tests are never accurate - I really don't know why they even bother with them. I didn't even have the caloric test because I knew that the results wouldn't matter and the nurse who was going to do it even told me that whatever result came out the treatment would be the same! So there was no way I was going to put myself through all that! VRT always seems to be the best way for most people. It didn't really work much for me but I did do an awful lot of walking to keep my brain active! Tinnitus is an awful thing to suffer from and I only get this mildly from time to time. Sherry you are very young to be suffering with this. I have a daughter your age and I would hate for her to suffer this. But keep hold of the thought that you have nothing seriously wrong with you as it is not life threatening. Positive thinking and facing it head on works wonders with it and hopefully you will get over it soon and never look back. Do you have support at home? Maybe show someone this site and they might understand better what you are going through. It's quite hard for others to understand as you usually look so normal. Keep active, don't hold your head stiffly - keep it moving like you would normally and give your brain a chance to compensate for the damage done to your inner ear. If you have any questions don't be scared to ask us on here. We've all been there and we know what it's like. Take care. Sandie |
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Sherry, I just wanted to share with you that lots of your symptom I've also had. I've been told that most people who get this heal in 9 to 12 weeks. I hope so much that you are one of those people. I only have slight tinnitus so I cannot tell you that answer, but it gets better as it goes. I'm thinking the good thoughts for you and I hope you are one of the lucky ones. Be strong! B=) |
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Thanks everyone for the nice posts and the advice. I'm just under a bit of pressure with starting 2nd year in college and finding it tough going, it's the brain fog that's the worst symptom for me. It just makes it difficult to concentrate and then to do assignments can be very hard. B, I totally agree with what you're saying, and it's good you have a decent neurologist. I do as well, he's one of the top neurosurgeons in the country. A problem I have is that my brain MRI did not come back clear, and for that reason, the neurologist is blaming the ear for all the symptoms, and the ENT's are blaming the lesion that showed up on the MRI. So it's a bit like being in limbo. I tend to listen to what the neurologist is saying sooner than the ENT's. Jemma, my first thought was hydrops too, but there's no way to get that diagnosed in Ireland hence looking to get tests abroad. That rotary chair looks like it might be worth a try. Sandie, glad to hear you are improving. I do use Stugeron, it works most of the time, and have looked into getting Meclizine, but it seems they don't sell it in this country anymore, so might get my brother to bring some over from the US when he's home next month. Gotta be worth a try. I've even started Tai Chi classes, after reading a report that it can help with vestibular disorders! Sherry, I have had tinnitus since about 4 months into this, and it's been with me since. You will get used to the noise in time, it's a process called habituation, I found I had awful problems sleeping with the racket in the ear but as time goes by, you stop listening to the noise and it bothers you less. For some people it disappears altogether. You may want to look into Cognitive Behavoural Therapy if the tinnitus doesn't ease, as that can help as well. Anyway, hope everyone has a good weekend. Gary. |
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I was diagnosed with Viral Labrynthitis last Tuesday 9/13/11. I was told this Wednesday 9/21/11 that I have 100% hearing loss in my right ear. Does anyone know if there is a chance that my hearing may still come back over time? It's been 11 days since I was diagnosed. Thanks, Lisa |
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Lisa, Anything is possible. I read a lovely story about a woman who developed this after a long plane ride and lost 100% her hearing in one ear and smaller percent in her other ear. She did recover, completely, but it took some time. 11 days is not long to be sick to be sick with this and you have to be patient. Read the above posts and some on other pages. There are a lot of stories that you can learn from. I'm sorry this has happened to you and will be thinking good thoughts for you. Don't ever give up hope and some days that will be so hard, but fight. We all have to remind ourselves to fight. B |
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Thanks B. I see the ENT doc tomorrow morning. I am hoping to hear something promising! I am only 32, and completely bummed that I may have just lost 50% of my total hearing. Thanks for the encouragement. Lisa |
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Gary: Sorry you are having problems. I really encourage you to consider Lyme and related co-infections as the root of your issues. It will explain everything. The brain lesions, dizziness, tinnitus, brain fog, etc, etc. I've had them all. I'm sure you will say that you got a blood test and it was negative. BIG DEAL. The CDC estimates that 9 out of 10 people with lyme test negative as the standard blood tests are terribly insensitive. You need to find an LLMD (Lyme Literate MD) who is the only type of doc who can rule this out. I know people who were sick for years (some 5-10 years) and got no help from regular doctors. They were all diagnosed with Fibromyalgia, Chronic Fatigue, MS, Labyrinthitis, MAV, or other diseases. Yet it was really lyme and the vast majority got better with PROPER treatment from an LLMD. I've been treating Lyme, Bartonella, and Babesia for the past 18 months and am nearly back to 100%. The vast majority of my symptoms have resolved...including my Brain MRI. The best test for Lyme is a Western Blot test from Igenex (www.igenex.com) They can send you a free test kit. You want to order the Lyme Western Blot IgG and IgM (test 188 and 189) It will cost you $200. If you don't believe me...please read this document...take a look at symptoms, etc. It is Dr. Burrascano's treatment guidelines for lyme...regarded as "the bible" for lyme treatment. http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf Lyme is in Ireland and most folks don't recall getting a bite. (I didn't...nor did I have the rash.) I also recommend watching "Under Our Skin" which is now free on Hulu and Netflix. Please don't blow this off. Your story is typical for lyme folks...years of misdiagnosis, going from doc to doc, etc. Your current docs aren't helping you...why not consider an alternative. Lymenet is also a good resource for finding an LLMD (flash.lymenet.org) I know in the UK that Breakspear Medical is a good organization for diagnosing / treating difficult illnesses such as this. |
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Just saw the ENT doc. We're going to try some more high dose steroids and an injection of steroids into my ear to try to get my hearing back. Also turns out that I've had Labrynthitis since 2003 and this is a recurrence. In 2003 I was told by the doc that I was making up my symptoms. For a while I thought I had, cause the dizziness went away after a couple years. Glad to hear that I'm not crazy! Lisa |
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The steroid injection in my ear was incredibly painful, but I can already hear a tiny bit better so it was worth it. Most likely we'll move ahead with a tube and wick after this to put steroids directly on the affected area in my ear. My vertigo is getting better, I may even try to drive this weekend. All, please pray for me to get some hearing back in my right ear. Lisa |
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Lisa, That is great news!!! I hope you are well very soon and I will definitely think positive for you!!! I'm sorry it was so painful, but maybe it's worth it in the end. Keep us posted. B |
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Hello to everyone old and new. I am stuggling to post on this forum now as the thread takes ages to load. Think a new page needs starting to reduce the text loading time. I'm still around and sometimes use the labyrinthitis.org.uk pages due to the quicker load / post. You will know I have had this rubbish since Dec 2010. Obviously vastly improved since the start. My weeks are made up of periods of good and bad days. Longest stretch symptom free is about 7 days. Usually I get 3/4 good days followed by 2/3 bad days. Some of you will know the pattern. Symptoms wise on the bad days it's the usual suspects: Tinnitus Neck Pain Off Balance Feeling Mild Amxiety and Sweaty Palms Vision can blur or struggle to focus (but not always) New one: Feel a creeping depression hanging over me. After all the riding out to see if it gets better on it's own I have only just been referred for the 7 inner ear tests. Had all the other tests long ago to rule out the serious stuff. It's diabolical the way the NHS lets you struggle on before getting a final diagnosis. Their best guess has always been Labs/VN - but take your pick. Anyway, to the veterans - keep fighting ! to the newbies - hang on it will get better ! Stay safe everyone, BINX1965 |
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Comments continue on page 14. |
I am having a major relapse, can't believe it after all those months of improvement. Back is the ear pain, head paid, neck pain, imbalance, dizzy to the point of feeling like I am going to faint. An hour ago I nearly called an ambulance because I came over hot, couldn't focus and felt that any minute I would hit the floor. It's frightening because I am on my own as the kid's have gone on holiday together. I have grabbed a blanket and am going to spend the evening and night propped up on the sofa as can't trust myself laying in bed as lying down makes me feel much much worse. When will this hell end and I can live a normal life again !!
Sorry to rant x