Sharp Blue: Labyrinthitis comments, page 4

Hi Everyone,

Wow! Page 4! Thankyou so much to Rich for this facility. You are a lifesaver mate.

Your gonna hate me! Walked for 2 and a half hours bank holiday Monday (3 miles). Came home and slept for 4 hours. Wow, I could not be more proud if I had run the London Marathon! That is a real turn around for me. I have read all the warnings on here and heeded the advice, so it will be a while before I atempt such a feat again! My friends were delighted, and helped me to do the last bit (in which I looked to outsiders as if I had just downed a bottle of scotch!) I wasn't sick miraculously, but really elated! I know it was stupid, but the occasional achievement keeps me going.

Managed to last at work today until 4.30pm, then left with head held high. They have now let me have the key to the disabled loo, which really helps as the room is huge and the loo is high..if I have a dizzy there is a rail to hang on to. (I can't believe this is me talking!) This has made so much difference to my working day! If any of you have access to this kind of facility maybe you should ask the question..... Those of us in the U.K. could argue that we have a 'special need'this is usually enough to scare most employers into making some kind of provision...just a thought.

Best Wishes to all,

Kate

Thanks for continuing the site, Rich! Such a lifesaver for all of us.

Excellent news about so many people feeling better especially after so many months.

I'm sorry to rant but I had a VERY BAD experience with an otoneurologist at the university hospital in my city. I went to him for a second opinion on Monday -- he turned out to be a buddy of my other doctor and called him by his first name and was a complete jerk to me. I guess he was offended that I was seeking a second opinion from his friend.

I felt like I was on the witness stand describing my symptoms and history to him -- he really was completely obnoxious -- fortunately my husband was with me and heard it all. It really was unbelievable -- I have never encountered a doctor like this in my entire life (fortunately, I haven't had to see very many -- but they have all been decent). It was totally demoralizing -- I had hoped that he could take the place of my other ENT who I have never been very impressed with. A nice guy but always late, in a hurry and provides me with NO SPECIFIC INFORMATION whatsoever about what is wrong with me and how to deal with it. He is also totally spacey.

Anyway -- my advice to anyone seeking another opinion -- try to make sure that there is no connection between the doctors beforehand -- that appt. was a nightmare.

The only positive thing was that he did provide me with much more info. than my other doctor. In his opinion, I do not have labyrinthitis but vestibular neuritis -- he said that someone with the ENG results that I had doesn't have labyrinthitis. He also said that VN is only a preliminary diagnosis based on what has happened to date -- that everything depends on what happens in the future. He said that I should get more tests and then start physical therapy. Even though he was a complete ***hole (sorry -- but it was shocking) -- he did seem to know his stuff.

Thanks for putting up with this long gripe.

Mary

hi - I have had labs for 3 months now, and have had some of my most lab-free days lately. It's still there, but I can feel things improving.

one other thing - (I know a lot of the posters here are Brits) but there's a fairly high profile baseball player, Ben Sheets, who's suffering through a bout of vestibular neuritis. who knows, maybe it will raise awareness of inner ear disorders.

here's a long link for those interested

http://mlb.mlb.com/NASApp/mlb/news/article.jsp?ymd=20050501&content_id=1034876&vkey=news_mlb&fext=.jsp&c_id=mlb

Hi Guys,

I have a question and I will apologize now if I have already asked this, but please bare with me :) I've been taking Xanax ( anti anxiety meds ) while dealing with my Labs. It has helped a lot and made life more funtional. anyway my question is this...will the xanax slow compansation??? as I'm sure you can all understand, I don't want to do anything to keep this nasty thing around longer.

Laurie

hey there.. Sandie....thanks for the concern and advice,i'm going to stay clear of the antideps as long as i can. Just a question to fellow sufferers- does labs affect blood pressure at all? it just occured to me that the last two times i went to see doctors about this my blood pressure was pretty high- 130/80 and even higher the previous time. I'm always anxious when i go to see doctors and of course very anxious since the dizziness began. I was just wondering if the high BP was a result of labs or something else altogether, in which case i should treat it separately and get it checked out. Also, has anyone else has a kind of fullness/pressure in the head, like a low-grade buzzing sound? i notice it when it's quiet around me....it's driving me nuts! Thanks people al.

Hi Al,

The answer would be YES YES YES :) I have had a problem with the same thing. aside from the labs I'm a healthy 35 year old with no other problems. I would have to say and my Doctor agrees that your presure is this way due to the ANXIETY!!!! My doctor put me on Xanax and I haven't had a problem since. The Anxiety with this labs is out of this world!!!! Anxiety can do alot of funny things to your body which are very scary, but the good news is it is not life threatening. We will get through this everyone :)

Laurie

Thank you, wnb, for the Ben Sheets news -- sent it to my husband and parents -- all baseball fans. Can you imagine having to play major league baseball with these symptoms?

At least he has an attentive set of doctors (and millions of dollars!) -- I bet no one asked him about anxiety as a possible cause of his problems (fortunately none of my doctors have asked me about that either) but I know that it happens to a lot of people.

Does anyone know of a blood pressure link to inner ear problems????

My blood pressure was 130/80 too -- the nurse said that this was in the normal range but on the high end (in February) -- on Monday it was down to 119/??. I wonder if there is a link -- and it gets higher when your symptoms are worse. I don't remember my blood pressure ever being at that level before. My doctor didn't say anything about it so I guess she wasn't worried about it.

Any info. would be great.

Mary

Al --

I get the buzzing and the fullness -- very typical for inner ear problems. I also get pulsating -- I think that it is due to the nerve in my ear being inflamed -- I've mentioned to all my doctors -- they have no answer for it but said not to worry about it.

Mary - sorry, that your second doctor was so rude. As for me, I came to an ultimate conclusion during long years of my illness - doctors in treatment of inner ear disorders are HELPLESS, USELESS, or even HARMFUL.

Wnb – thanks for the link - good catch! Probably, you should be at least Ben Sheets to get more respect, more attention, and more trust from doctors’ community, that your illness is real and disabling. Otherwise, you will be treated as a "nervous housewife" who if not imagines, but at least exaggerates the symptoms. As Mary did, I will also show the article about Ben Sheets to my husband.

Al - blood pressure of 130/80 or even higher is definitely due to anxiety caused both by labs and the visit to the doctor. I always have it higher than usual when visiting doctors. I am pretty sure it is nothing to worry about.

Laurie – if I were you, I would take Xanax as long as it helps me to overcome my anxiety. You are a ‘fretter” by nature - I can see it right away from your posts. Do not challenge your nerves – take Xanax for some time. But when you feel better, by “better” I mean “calmer and less anxious” - try to go without it – just try. As for me, I was on Xanax for two or three months, then I switched to antidepressant Paxil and I was on it for more, than a year. I do not think, that both these drugs slowed my compensation process – the recovery was slow anyway. But all the symptoms of anxiety and depression were so bad, that in addition to dizziness, imbalance, excruciating headaches, ear pain, buzzing in the head, horrible sound sensitivity, and my husband’s disbelief, they made my life just unbearable. Why would I add the anxiety symptoms to all the other symptoms?

Anna

Anna,

You are the Greatest!!!!! :) Now where in Gods Name would you get that I'm a Worry wort??? ( Laughing) Boy you got me down to a T!!! Thankyou sooooo much for your understanding :)

Laurie

Hi all

I agree - that although it is a fact that a dodgy vestibular system could upset blood pressure on its own, the main reason for high BP is anxiety due to this. Thankfully my BP has remained normal throughout this.

Will check out the baseball player link.

Laurie - xanax may delay compensation yes. But im not too sure as it is not a vestibular sedative.

xx

Emma --

I just want to check what you wrote -- can inner ear problems raise one's blood pressure? Did a doctor tell you this? I am just curious since mine has been higher than it is normally off and on during this ordeal. I haven't had much of a problem with anxiety so I am wondering about the actual link b/w inner problems and high bp.

Thanks -- Mary

Mary

I thought it mentioned it here:

The vestibular system filters and fine tunes all sensory information entering the brain - light, sound, motion, gravitational energy, chemical information, air pressure, temperature. It is responsible for controlling and fine tuning our vision, hearing, balance, sense of motion, altitude and depth, sense of smell, sense of time, sense of direction and anxiety/depression levels as mentioned above. Therefore any of these processes may be affected when suffering from inner ear dysfunction.

...which appears on my site but it doesnt!! I have read it somewhere! But dont know where. Cant answer sorry - I think it is mainly the anxiety involved but as it says above, the vestibular system is responsible for regulating a host of bodily processes.

xxx

Thanks, Emma -- I still can't believe how integral the inner ear is to the functioning of the rest of the body -- I knew nothing about it before coming down with this problem.

Mary

I know mary, its all quite amazing really.

Have a nice weekend xx

Hi all, Can anyone describe anxiety to me. I have a feeling starting in my chest and kinda whooshing over my head and my upper body. I feel very on edge though I do not have palpitations or sweating etc. Went to the hairdressers a few days ago and ended up not being able to go through with it. I did have a dizzy spell in there a couple of months ago and have been back since {before this thing kicked in again), but I just couldn't do it. What is this thing? I don't want to go on antidepressants as I feel that this is probably only mild anxiety. Has anyone tried Kalms, what are they like? Does this anxiety make the dizziness worse, cos I did feel I was getting better and now I feel worse.

Sandie x

Hi Sandie,

It does sound like anxiety to me. There are many symptoms of anxiety, trust me I have delt with anxiety for 14 years. It is my belief that the Anxiety can make the dizziness worse, but you may want to check with Em or Anna, They are Very informative on these things. With the Labs my anxiety went SKY high and the dizziness was worse. My doctor had given me Xanax ( anti anxiety Meds) to which I have NEVER taken before. But I was such a mess over this Labs and anxiety that I couldn't eat, sleep and was a mess. The Xanax has been a life saver. I'm eating, I'm sleeping and the dizziness has gotten sooooo much better. I was to the point where I was housebound over this....I'm now getting out and about :) I hope this was helpful :)

Laurie

Hi all:

I've been better the last week -- but think I may have overdone it today -- my body is starting to sway again which is usually a bad sign. I'm holding my breath to see what tomorrow brings.

Sandie --

I have also gotten that whooshing feeling from my chest up through my neck and head -- very strange -- I remember other people mentioning the same thing. It usually happens to me after some sensory overload experience -- like someone coming to our door and then my dog starting to bark very loudly and then having to talk with the person. It's too much if I am having a bad day.

I don't have any past experience with anxiety so I can't comment on that -- I do think that it is important to remember that it is completely normal to worry about these symptoms and to worry about everyday experiences b/c the symptoms make our everyday tasks incredibly hard if not impossible at times. This does not mean that you have anxiety -- it just means that you are naturally concerned about being able to do all the things that we used to take for granted.

I have only been able to get my hair cut three times in nine months b/c the place where I get it cut is so noisy and busy -- it is too much for my vestibular system and makes me dizzier -- just like shops make me dizzier -- too much sensory stuff happening especially in my peripheral vision.

I just got it cut today -- and I had to wear ear plugs and close my eyes off and on. The woman who cuts it is used to my inner ear problem now and knows that I can't lean back to get it washed, etc.

by the way, what is kalms?

Hang in there -- Mary

Thanx Laurie for your comments, hope I don't have to resort to meds cos I do sleep well which is why I think it is maybe mild anxiety I have if there is such a thing!

Mary, I have solved the hairdresser problem by having a friend who is a hairdresser come this week to do it for me. But that is exactly the way I felt in the salon, the heat, the hairdryers and general business of the place really had me anxious. Kalms is a herbal remedy supposedly for anxiety that you get from supermarkets etc. Just wondered if anyone knows if they actually work.

Yesterday about 5pm we had a horrific thunderstorm right over my house and the first clap of thunder, which was unexpected, really effected my right ear which made me flinch forward in pain. For the rest of the night my hearing was very sensitive and uncomfortable but it seems ok today. Anyone experienced this? It was quite scary.

Must add that I think this site is really good and it is so nice to hear other people's experiences.

Sandie xx

Hi Everyone....

Just wanted to say HAPPY MOTHERS DAY to all the moms :)

Laurie

Yes Sandie - inner ear issues are worsened by barometric pressure - my dizziness is much worse when a thunderstorm is looming xx

hi everyone!

My dizziness has steadily improved the last few months and there are days where it is scarcely noticeable....yet what is bothering me is what most people call 'brain fog'. It actually seems to have gotten worse over the last few weeks. Is it normal for symptoms to progress at different speeds?

I find myself re-reading sentences in books because it is taking a little longer to register information. It's kind of scary... Same when talking to people...has anyone else noticed similar problems?

Thanks al.

Hi Al,

I too have noticed that when one symptom calms, another acts up. I'm not sure why that is. I have had labs for 6 months now, and although the dizziness has calmed alot i'm still having other symptom. I too had the brain fog, which was scarey to me as well, but just remmember this too shall pass. Em and Anna are extremely educated on this topic, Okay you two, sooo is it the norm with labs to go through stages of symptoms? :)

Laurie

well its been 3 months 1 week and i do feel better not 100 percent though still spacey feeling that wont go away and sometimes alittle fatigued.....WNB i think me and u are progressing at the same time.....HOW MANY PEOPLE OUT THERE THINK ITS NEVER GOING TO GO AWAY...I KNOW IT WILL AND THE DOC SAID IT WILL I JUST WANT TO HEAR IT FROM U GUYS TO MAKE ME FEEL BETTER..

Hi, everybody,

Chad – taking into consideration the short (it is short!) time, that passed since the onset of you illness and the speed of your recovery (you are very close to normal) – you have a very good chance to get over it completely. Some remaining mild symptoms might persist for some time, but I completely agree with your doctor – IT WILL PASS!!! Stay calm, strong, and do not panic!

Laurie – with any inner ear disorder a patient goes through different stages and different symptoms of the illness. The physical and chemical structure of the inner ear is very complicated. Its communication with the brain and other systems of our body is so capricious, that there is an extremely long list of steady, intermittent or changing symptoms (sometimes very weird symptoms!), which accompany any inner ear disorder including labs.

I am in the process of reading a brand new (just published) book “The Consumer Handbook On Dizziness And Vertigo [Hardcover] By: Dennis Poe. Its chapters are written by leading specialists on the subject. You can get the book from Amazon.com for $20. It’s worth it! It explains in detail how our balance system works, possible illnesses of the inner ear, their symptoms, coping techniques, how to deal with it in everyday life, how to explain your problem to other people, including doctors, by the way. Many possibilities of treatment (not cure, unfortunately) are discussed. I am still in the process of reading the book.

Guys, stay strong!

Anna

YES CHAD.....I am one who feels it will never gooooo away! BUT there are alot of good people on here that have kept me in line and hopeful :) it has been 6 months for me and although I am ALOT better, I too am not 100%

Anna, thankyou sooo much for the information!!

Laurie

alright listen to this i heard people say that alcohol cannot prolong it just make u feel worse the next day.....is that true....cause last saturday i tested my waters and drank saturday night i didnt feel that good sunday or alittle of monday but like tuesday and on i felt fine....its just made me alittle more tired and lightheaded....so give me the truth about the alcohol the docotor said a few wouldnt hurt...but i have a bunch of weddings coming up and i was wondering if drinking once a week will hurt.......cause im not sitting at these weddings sober im sorry....

i also heard walking is good for u....but if your heart beats fast when u do should u still try it??????

To be frank, walking scares me b/c I sometimes get the intense feeling that I am going to pass out on top of everything else -- but I need to force myself to do it.

I don't know about the alcohol thing -- I am not trying any until I have been sypmtom-free for a long time -- the last time I had some it was not a good thing.

I have now had this for over 9 months and have no idea when it will be over. I have stopped thinking about when I will recover completely and focus more on what I am able to do each day and how I can reduce the severity of my symptoms.

My brain fog actually got worse (sorry but I will be honest) as the months progressed. I didn't notice it as much in the beginning. Now it does seem to be worse when everything else is acting up.

Does anyone feel strange when they are trying to look down and write something by hand???? Like you don't have total control of your hand or everything is very slow????

Hang in there all -- Mary

Chad,

In my experience i have found 3-4 drinks are ok say once every few weeks. Getting pissed totally off your nut will definitely make you feel worse. I tried it and i felt like it took me 2 weeks to get back to the same point i was at previously.

In reference to your comment about walking, yes i found it is a fundamental part of getting back to normal. The fast heart rate is probably more due to you being anxious about walking then due to the walking itself.

After around about 7 months i think i am at 90% mark. I am back at work,I even go for a walk at lunchtine in the city which brings on the marhmellow feet bigtime but i am forcing myself to get used to it.

Keep well all

George

Hi, everybody.

Mary - You asked - "Does anyone feel strange when they are trying to look down and write something by hand???? Like you don't have total control of your hand or everything is very slow????" I do not feel it any more, thanks God!!! But, YES, even three, or four months ago I was continuing to be quite SLOW in writing, typing, reading, thinking, responding, walking and everything else. I was a real ZOMBIE with little control of my body and mind. Now, after 18 months of my illness, I am much faster, more mentally alert, less tired, and much less sensitive to sounds. I am still only 85-95% back to normal (depending on a particular day). There are still “good” and “bad” days. My current standard for a “good” day is significantly higher, than this standard, say, six months ago. I still have a long way to improve ahead of me. Chad - I tried a FEW SIPS of wine being at a party. That was so GOOD, no bad consequences! But that was only quarter of a glass – not more. I do not want to hurt my poor balance system. George – he is absolutely right, trying to walk as much as possible, even with his heart pounding hard and fast (normal human anxiety). Walking and moving around is a key element to our recovery!

Anna

Hi everyone,

Anyone tell me why you can feel really good for a few days and then really dizzy on another day? I have just had three fantastic days, feeling happy, no dizziness etc and wham, today its back though I have tried to keep going and have done the garden, a hard task for the fit and healthy the state my garden was in! So, why does it happen? Does it mean that I am getting better because I have good days?

Also, the anxiety I was suffering from, is this a part of Labs and why?

Sorry to ask so many questions and I know most of you are worse off than me but this thing really gets to me at times.

Sandie x

Hi Everyone....

Sandi you couldn't have asked a better question!!!! :) I have been wondering the same thing for the past 2 days. I was doing sooooo good for about a week and now WHAM, I'm lightheaded, unsteady and feel funny. I would love to know why this is happening also...anyone have the answer Pleeeeeeease :)

Laurie

Hi all:

I go through the same type of pattern. I just had a week where I felt much better (still had symptoms but not as bad). Mother's Day it starting coming back and has gotten a little worse each day. This has happened to me a number of times and seems pretty typical for an inner ear problem.

The last doctor I saw, who knew a lot but was a jerk:), said that our brains are compensating for the inner ear damage, then something can happen which causes us to decompensate a little (stress, an unrelated illness, etc.) -- hence the symptoms come back after subsiding. I have also read about this in some books/websites, etc.

As always, hang in there everyone.

Anna -- a special thanks for your reply and for continuing to respond to posts even though you are doing so much better -- thanks for checking in -- we all value your advice. Glad that you are doing better!

Mary

If I went two steps forward last week, I'm having the one step back this week. I threw off my sleep schedule just enough last weekend to reawaken a lot of the wobbles, brain fog, and heavy head. Soooooo frustrating.

Interestingly my best week i.e. last week, was almost entirely caffeine free. I might have to "quit" again.

Mary - that seems to make sense, in that your brain may start to decompensate after a few good days. I woke up with dizziness yesterday morning and it lasted all day. Today I am fine. So does anyone think it may be the way we lie when we are asleep or does anyone know of reasons why the brain temporarily decompensates apart from stress or other illnesses?

Since the loud thunder clap affected my ear 6 days ago I have had a very low level of tinnitus. Doesnt bother me at all during the day, I am not too upset about it but does anyone know if this will go away or am I stuck with it, or will it get worse?

Thanx.

Sandie x

Anna - may buy the book you mention - thanks.

Laurie - yes I think there are different stages. But the reason why somtimes more symptoms are more noticeable is merely because if, say, the dizziness in the head symptom is milder, the other symptoms, like the motion in my case, seem stronger but prob arent. Hoep you're getting me!

xxx

Think I gotcha Em :)

Laurie

Hi everyone, I'm still here! I have just had the cold from hell,but my dizziess has improved! I was waiting to feel utterley terrible but when I recovered from the cold , the dizziness was better than when I went into it! I 'steamed' my sinuses every day, and blew my nose constantly. For some tenuous reason I am compensating at the moment. I know how fragile this can be however, and value everyday without the dreaded dizzies. I know my life from now on will never be dizzy free,and I am constantly reminded of this if I try to stand to talk, or go to a small loo, or in the shower! However, this is the best it's been for a long time. I am starting to think that I have to live my life from a different perspective. Before and After. Labs destroyed my life, but it has made me think about re building it -only better. I know I will never be the same again but I will make the best of what I have. I will never canoe again, my mountain bike sits rustng in the shed, but I can walk, I walked 2,1/2 hrs last weekend! I have put on 1/2 stone, but being a bigger woman just gives mw more excuse to chuck my weight around! If every day has to be like this from now until the day I die, I swear to to you all on this site ,I will try and cope!

Kate

Kate how long have you had labs? You sound so downhearted but I am sure you will get there eventually. It is not a life long illness, I know it hard but you must be positive and beat this thing! Take care x

Sandie

Kate - I know exactly how you feel - before and after...Having a bad dizzy time and down time too...life with this disorder is tough esp after nearly 3 years...

Thinking of you xx

Thanks Sandie and Em, this site has come to mean so much to me, especially with so little on offer medically. Guess what I did today for the first time in 8 months, I went to the Cinema! I went with a friend who has just come back from the pit of depressive illness, and has not been to the cinema for years. We set it as a goal to challenge and push our boundaries. We ended up supporting each other through it , and really enjoyed the film despite some blips. He had to get up and go out half way through, but came back. I was dizzy beyond measure when I got up to leave, but managed the film by sitting at the back, and not looking down. If I looked down I would start that whole 'pitching forward' thing. Wow, what an achievement! We both came home, and I cooked a meal, and we spent the evening mutually patting each other on the back, and would not have achieved it without eachother. We were both exhausted by it all though, and boy will I pay for it tomorrow, but it is a Sunday so who cares! How can this thing reduce an adult to the state where a visit to the cinema can be like climbing Everest? By the way, I now have a permanant 'cold'. The one I mentioned to you before has just gone on and on, my sinuses and ears are permanantly full. Has anyone else experienced this?

Thanks for all your support,without you I am convinced that today would not have been possible,

Best Wishes,

Kate

P.S. When I said about permanant cold, I meant the one that I mentioned some time ago - not yesterday!!!

I've had VL since January 7th, 2005, accompanied by a hearing loss in my left ear. The day before, both my ears were humming while at work. The doctor gave me ear drops. Just after 4:00 in the morning on January 7th, I woke up with all the symptoms of VL. Plus, I couldn't hear in my left ear. Serc didn't do anything; I went to an ENT specialist a month later who put me on Prednizone. Hearing improved a bit.

Since then, I've been to a Naturopathic Health Clinic where the N.D. detected a virus in my body. He told me to stay off all dairy products, no chicken and no alcohol for at least two weeks. I've had an IV of Vitamin C and he prescribed Vitamin C 600mg.

I'm also taking Oil of Oregano, Oregamax, Extra Strength One-A-Day Garlic 1000mg. Will Ginko help with the hearing loss? I also have some Chinese herbal remedies for hearing loss.

One month later, my symptoms of VL have eased off dramatically after I took Prednizone; I'm also seeing a Physiotherapist to relieve the vestibular system. My biggest concern is my hearing loss in my left ear. I have sounds like fuzzy, sometimes a waterfall, and some dingy sounds.

At my work, when I'm finished with the radial arm saw, I'll take off the hearing protection and I can hear the saw shutting down in my left ear. I'd say less than 15%. Will this virus go away and my hearing return to normal in time? PLEASE HELP!!!

Ive had labyrinthitis for about 8 months now.. I recently just started getting vertigo a few days ago and its worse when i change positions..Does this seem normal with labyrinthitis even afer having it a long period of time? It seems like my symptoms are worse these past few days.

Hi Kate,

I too have really bad sinusitis which showed up on my MRI. My ENT has said that there is a strong relationship between Vestibulopathy/Labs and sinusitis. I have found that the labs gets worse when the sinusitis flares up.

I tried antibiotics for 2 months to try and get rid of the sinusitis but didn't work. Now, each morning i do steam inhalations with eucalyptus oil and then lie on the bed with my head over the edge of the bed for 5 minutes. Believe it or not this is the only thing that helps clear up my sinuses somewhat. However having said that i feel like i have a permanent cold e,.g heavy head, buzzing sensation in the back of the head, numb teeth, ear feeling full e.t.c

I am now having shots for allergies as the the thinking is my sinusitis stems from allergies to house dust mite.

Kate do you find that when your sinusitis is worse so is your dizziness? Sinusitis can cause light headedness so i am now at a point where my disequlaibriam is around about 90% back to normal so it is hard to tell whether the remaining 10% is due to sinusitis or labs.

George

Hello,

My name is emily. I have posted here before though I do not frequently. I find it helps my anxiety not to read about this terrable affliction. I have been dizzy since 8/11/04. So I am sooner that I would like creaping up to my one year mark. Well I guess my question to all would be does anyone feel like there head is not buzzing inside but tingly on the outside. Sometimes it feels like something is crawling on my scalp usually along with the feeling of my damaged right side feeling kinda crawled. My sinisuse sometimes feel like they are bouncing to. Just wonderingin if anyone could sympathize.

To one and all. I am getting better. to say I am cured no. to say that there are times when my brain FINALLY ignores the dizzies yes. But I still struggle. as I am sure we all know about now.

Emily, (thanks for responses)

Dear George and Emily,

George, that is really interesting, I am going to try some inhalations with steam and eucalyptus. Interestingly also, someone said to me the other day that they were not suprised that I had ear problems as my voice sounds quite 'nasal'. Listening to myself whenever I am taped confirms this. I had my adenoids out as a child, I wonder if there is any connection with the problems I am having now. My dizziness is abating, but whenever I am in certain situations, my brain seems to not be able to make sense of them - if that makes sense. Strange lighting, small places, white rooms(!) Showers, loos. I can actually 'dip' my head in and out of these situations and notice a difference! Does this sound mad? To Emily; Yes, I had all that creapy stuff the first time I had labs. Someone on here suggested Arnica Cream on the neck and scalp and I found that helped.

Best Wishes,

Kate

UPDATE IM AT 3 1/2 months....just spacey feeling stilll and get tired easily but other than that nothing i have had just the spacey feeling now for like 1 month it wont go away completely..WHY THE &*&& wont it go away completely...sorry to swear but im just frustrated.....if the spacey damn feeling would go away i would be 100%.......

GOING TO THE PREAKNESS THIS WEEKEND hopefully i can enjoy myself!!!!!!!!!!!!!!!!wish me luck

Hi, everybody!

Kate - I am very impressed with the great efforts you are making to keep going. In my understanding, that is exactly how everybody should proceed while fighting this disease (try walking, going to different places, try not to become too upset, encourage yourself, etc.).

Chad – the speed of your recovery is really fast. Probably, this spacey feeling is the last symptom, which is going to disappear, and you will be 100% normal!

Steve – positional spells of vertigo is, probably, a manifestation of BPPV, which come as a consequence of labs. It should subside with time as well as other symptoms. Unfortunately, time is indefinite (but not lifetime!!!)

Blaine – if to be honest, I personally would prefer to be deaf in one ear, than to be dizzy. Hope, you hearing will return, though.

Emma, Emily, Sandie, George, Mary – I read all your posts and my thoughts are with all of you all the time.

I am probably, 80% back to normal. Still have problems, but keep going.

Hugs, Anna

Hi everyone,

I am at the point where i have only the constant slight marshmellow feet.

To anyone who is almost better, did they find this is the last symptom before getting 100% better?

I have been like this for about 4 weeks and it seems my improvement has levelled off.

Anna is this what you mwean by the spacey feeling when you replied to chad?

Anna what symptoms do you have now that you are 80% there?

george

Hi everyone --

Emily - I get those same feelings -- tingling on my scalp, etc. I also get this weird feeling around my eyes, sinus area when I am really tired and my symptoms are acting up. I have read about other people feeling the same thing.

The last two weeks have been a decline for me -- I felt much better the week before mother's day -- and its been downhill since then -- I'm trying to suck it up and stay positive.

I am going next friday to get a posturography, another eng and some other test (VEMA or VE?? -- something). Has anyone had a posturogrphy?

I hope that I can make it through it all without keeling over and getting the spins, etc. When I had my first eng I didn't feel nearly as bad as I do now -- so I hope it doesn't make me totally sick.

After these exams, I am going to start physical therapy -- we'll keep you guys posted.

Mary

Hello everyone, This is the first time I have been on this site and I never knew that so many people suffer from labyrinthitis,I thought it was just me.

I am sorry to read some of these cases but I fully understand everyone. I have had this virus for 8 weeks now and I honestly cannot remember what it's like to see things properly.

The last time I had this was three years ago this same month.It died down two weeks ago but then came back when I got a cold.

I too have had sinus problems for years and I too steam my head(try just using water as oils like mentol can cause more problems).I bet most of you have a very red colour at the back of the throat and probably large tonsils.My doctor said it is a sign of people who suffer with allergies.

I went to a homeopath yesterday for a remedy which a few people have had fortune with so I will let you all know how it goes within a week.

I have posted my story on how I believe this virus got me again on this homeopathic website. http://www.abchomeopathy.com/forums.php Check it out....

Bye

Jayjay

Hi, guys

Being specific on my symptoms. __________________________________________ Symptoms I still have every day (some days are worst, than others):

-Constant head discomfort and minor heaviness.

-Pressure on the nose, between the eyes, on the left cheek. Tingling sensations in the face and arms.

-Slight pain in the left ear.

-Short dizzy spells caused with sharp head or fast eyes movements, or bending down, or looking up. I tend to look down whole walking, or standing -it makes me more steady.

-2-3 second spinning sensations while turning in the bed from one side to another (BPPV). -Increasing the symptoms in big and noisy areas like Wal Mart, or restaurants.

-Concentrating my eyes on computer screen, or scrolling it often brings short dizzy spells, especially when I am tired.

-“Spacey” sensation while walking, like I cannot control my body in a big space around me.

- Very often using my own voice brings ringing, buzzing and vibrating sensation inside my head (dreadful!). I hate to use telephones. -----------------------------------------------

No more excruciating headaches, less pressure in my facial area. No nausea. I can move faster and my balance has improved much. Much less fatigue in my body.

Keep strong, everybody!

Anna

thanks for the support Anna unfortunately I wasnt really that active over the past 9 months of this condition but i did notice before these bppv symptoms i felt as if i was in a stage of feeling spaced out or in a dream.. Im going to see about a specialist in santa rosa and possibly get the eply manuevr done and start some VRT. It really has been a struggle only being 16 years old having to deal with this condition.. You all are really strong and i wish you all a good weekend.

Hi everyone,

I think I might just be getting over this thing now, guess I am one of the lucky ones. Mine started last November, with mostly mild symptoms until end of March when I caught a virus and Labs really kicked in big time! So I have had it for two months this time although for the last two weeks the dizziness and unbalanced feelings have gone including the night time dizzies. I am still suffering from the anxiety though and don't feel I can go to work just yet. I am trying to force myself into situations that make me anxious i.e. going out on my own and going to the supermarket which I haven't managed on my own yet. But hopefully I will get there. I came off my meds (stemetil) and its the best thing I could have done, got my brain to compensate instead of masking the symptoms. Last two days have been a bit scary, my right ear has had a burning sensation and a feeling of pressure inside and I am scared it is all coming back. The weather has however been very dull and thundery and I wonder if its anything to do with that, can anyone enlighten me?

Steve, so sorry you have to go through this at such a young age, but keep strong, it will go eventually and you will have better days.

Take care everyone, Sandie x

Steve - it is very sad, that you got this illness, being so young. Still, all practicing specialists, who have watched hundreds of patients with dizziness - all agree, that the younger and the more fit a patient is – the more chances of full recovery and compensation he has. I just read it in a brand new book on dizziness and vertigo. My problems with dizziness started after hepatitis infection when I was 19. I have had this problem on and off for all these years. Now I am 53. During these years: I got my Bachelor, Master and PhD degrees in Engineering and Materials Science, got married to a great guy, gave birth to my two beautiful children, moved from Russia to the USA (it was not easy!), have a good job now, I traveled all over the word for international conferences and on vacation. Now I am recovering from my fifth bout of this illness and I have big hopes, that some day I will feel “ normal” again.

Steve and everybody – chins up – continue your struggle with this monster - life is still beautiful!

Sandie – weather changes still hurt me – my ears feel full and painful and I have pressure on my nose and behind it. Weather and atmospheric pressure sensitivity is a very common complain of people with inner ear disorders.

Anna

Thanks Anna, today the weather is not thundery and my ears are not too bad!

Nice to hear your story, you have accomplished so much you should be proud of yourself!

Sandie x

this really sucks now that i think about just about 4 months and still spacey feeling in my head........this &*^*( stuff will never go away this is unreal.....this shit is annoying and stupid!!!!!!!!!!!!!!!!!!

Just checkin in.. I went to a different hospital and im goin to talk to some specialists on thursday.. i did a vestibular nerve test yesterday. Its gonna be all day so i hope somethin good will come out of it.. these doctors seem like they actually know something compared to the other hospital I was at. Besides the wierd feelings ive been havin when turning my head i can say I almost feel normal just a litle spacey and ive been tryin to get out more like I used to.

steve i think your in my boat i feel fine except alittle spacey in the head....and if i drink i get worse the next day or two...i want to enjoy the holiday weekend and party but i cant to much cause of this shit

Chad - please, no cursing on this site. We all know, that this disease puts a lot of stress on our poor heads. But let's keep decent while relieving it.....

Steve - how was your talk to the specialists in the new hospital? Was it something new?

Anna

Yea i ended up finding out that my left ear has an 18% weaker response than my right. Yet they dont suspect bppv since there is no nystagumus but im going to see a physical therapist tommorow and see what he thinks.

hey guys - I have been reading all your comments and i also have this ...

My mornings are my worst - dizzy lightheaded and very nauseous so i have to take stemetil in the morning and have to force myself to get up and eat something,

I can only get up around 10ish so i dont know how people go to work with this thing!

I try not to take stemetil the rest of the day and my afternoons and evenings are usually better - can even walk to the shops, shop for about 10-15 minutes but tubes make it worse! (in london) last time i had to get off i felt so bad..

Can anyone suggest anything that might help me in the mornings or should i just carry on taking stemitil?

any advice would be great I take ginkgo, vit C, Vit B etc etc

Thanks for setting this site up!

Hello All,

I stumbled upon your listserv while searching for info on baseball player Ben Sheets (who has suffered from apparent vestibular neuronitis). Here's my story in brief. About six months ago i cam edownb with an upper respiratory cold. Soon after I felt lightheaded and dizzy. When I moved my head, it felt like it kept on a movin'.In addition, I felt pressure inside my eyeballs and had trouble focusing visually. And worst of all, brain fog! For some time, I too had that feeling of hopeless dread wondering if it would ever end.

The docs were ambiguous about diagnosis and treatment, but thought it was likely vestibular neuronitis. MRI came up negative(my wife said this proves there is nothing in my skull). I am about 80% better on all symptoms, but it varies from day to day.

A few questions for you. What have you experienced after taking anti-histamines? Occasionally I take Benadryl at night for seasonal allergies. My symptoms are considerably worse for about half of the next day. Alcohol seems to do the same. Secondly, has anyone tried physical exercises?- one involves flopping from one side to the other (can't recall the name of these) and the others, I believe, are called Barrone's exercises). On another note, I have found that vigorous physical exercise helps- however this may simply be because it is a stress reliver.

Finally, everyone hang in there. We are not crazy. We are courageuous for getting up each day and making it through.

Dan

hey guys (me again)!

As well as my questions in the last post -

can everyone tell me how long you took off work for before going back for a complete day??

not feeling like i will ever get there!

Hi everyone:

I survived my posturography and VEMP test -- the VEMP was nothing to worry about whatsoever and the posturography was not bad at all -- did not increase my dizziness or make my stomach upset. Anyway, hopefully the results of these tests will help with my physical therapy plan which is the next step for me (diagnosed with vestibular neuritis).

Dee -- I always feel sick to my stomach in the morning, especially when my symptoms are bad. I finally figured out why it is especially bad in the morning -- I think it is because my body feels like it is on a boat a lot of the time, during the day and at night, so when I wake up I feel like I have slept in motion (like on a boat for the night) -- which makes me nauseated and more off-balance in the morning.

Last week, my symptoms were very bad and I thought that I also came down with the flu but then figured out that I had motion sickness from being so dizzy -- I took dramamine and it seemed to help.

I don't know anything about stemetil -- sorry. I finally started taking valium when things are especially bad -- after ten months, I really needed a relief from the very bad periods (when I can barely walk around the house). I've only used it off and on for the last week -- I will say that it really helped reduce my symptoms -- I was pretty amazed at how it lessened my dizziness, brain fog, etc. -- and I take the lowest dosage available.

The only problem is that you can't take these vestibular surpressants very often b/c they do interfere with your brain's compensation which will lead to a longer recovery.

Dan -- I have not taken anti-histamines either -- but I'm sure someone on here has and will share their experience.

I have been very lucky and have not had to work during this ordeal -- I really have so much respect for those that do -- it must be incredibly hard.

Hang in there everyone -- Mary

Hi everyone,

After my apparent 'recovery' for a couple of weeks, I am now suffering again. I have had a bit of a cold, germs from the kids! Maybe that is what is happening but it seems different from before. My right ear is playing up, seems like my tubes and I have slight dizziness. When is this ever gonna end?

Dee, I too am from the UK and was prescribed stemetil. It is to counteract the dizziness and nausea, but it does not actually cure the inner ear infection. After researching on the internet and advice from one of my doctors (all the other doctors I have seen say to take it, but I don't think these G.P.s know what they are on about half the time), I was told to stop taking it as it is only stopping the dizziness and the brain needs to feel this dizziness in order to compensate for the damage that has been done to the inner ear. The brain is a fantastic thing and in time it will adapt so that no more dizziness is felt and your balance improves. Saying this, you must also make your brain work which means you must not just lie down and rest because it feels better that way, you must get around as you normally do even if it means forcing yourself. I have had this thing since November after I caught an upper repiratory virus but it didn't bother me too much and I still went to work, but in April I caught another virus and the inner ear thing was much worse. I have been off work since then and can't see a time at the moment when I will be able to go back which is so frustrating. So, don't worry about the time you need to recover because your health is the most important thing.

I believe that I caught labs because I did not look after myself very well. Overweight, bad diet, never took vitamins or supplements and always rushing round, working and taking care of three kids. Though I never felt it at the time, when I look back, it's no wonder this has happened. Anybody else feel this way? I have resolved to take care of myself from now on. I eat a good diet, have lost over a stone in weight, and when I do go back to work I am not gonna over do it.

Take care everyone.

Sandie x

wow - what amazes me is that people do actually have the energy to go to work -

I have only had this for 2 weeks, was hoping i was one of those that would only have this for the 6 week period..

but walking to the park and back (10-15 min) sometimes takes it all out of me..

On good days i have managed to go to the shops for half and hour

there is no way i could get up at 7-30 and go to work for a whole day as i normally would!

has anyone got their energy back?

Dear Dan,

My story sounds like yours. (My first posting outlining it is on page 3 of this website)

I too started off with a cold, but my problem is sinusitis which showed up on my MRI. My labs flares up when my sinusitis becomes worse and i have tried anti histamines. They do help...but for me i think it is because they control my sinusitis not my labs. A word of warning about anti histamines.....I find that i feel better when i am taking them but when i stop my sinusitis flares up big time which i think makes my labs worse. On exercise apart from the normal VRT therapy, i found jogging for a few minutes around the back yard is better than walking for my "marshmellow feet", which i find really weird. I also skip sometimes. I am now back at work but i think what helped me the most was doing the things that made my labs worse e.g walking half an hour a day and walking around a shopping centre around half an hour a day also.

George

First of all I would like to say "thank you" to all of you. You are so couragious. I decided to research my condition today in an effort to better educate myself. First, I fould Em's website. I cried as I read every page, not because I was discouraged, but because I knew I was not alone and not going mad. My Labs story is this: I am a 39 year old woman. On April 8, 2005, I became very short of breath and my boss took me to the ER. I was diagnosed with an upper respatory infection and perscribe antibiotics. On April 15, I followed up with my GP who said I seemed just fine. On April 29, I visited my GP again due to a burning sensation in my throat and difficulty swallowing. She said I was fine and sent me home. On the evening of May 11 I was driving home from a very long day on a very dark rural road and got terribly dizzy and tired. I started shaking and all of a sudden felt as though I was burning up. My chest, arms and face felt like all of the blood vessels were bursting (a prickling sensation) and my heart was pounding. I managed to pull off the road for a few minutes and did my best to pull myself together. I forced myself to drive home, panicing all the way. The next morning I went to work as usual, but didn't feel quite right. That evening as I was driving home from work (1 1/2 hour commute) I got extremely dizzy, felt fatigued and had this disembodied feeling. The burning sensation returned and it was all I could do to drive to the nearest place to pull over. I sat for awhile, got out, walked around, drank some water, but to no avail. I called my mom (sobbing) to come and get me. I was afraid if I closed my eyes and went to sleep that I would never wake up. Needless to say, I was scared to go to sleep that night and thought several time of calling 911. I called in sick the next day, thinking I had the flu or something. Tuesday the 17th, still unable to drive, I caught the bus and headed for work. The bus made it 6 blocks before I got so sick I had to get off. I called my mom and begged her to take meto the hospital. During my 30 minute wait for her to arrive, I almost called 911. I thought I was going to die. I was so scared! I was finally diagnosed with Labs. I was so glad that finally whatever was wrong with me had a name. I thought I was crazy! I was given Meclizine and Diazepam. I am tired all the time. My husband drove me to work on the 19th, but I had to take the bus home. I like to call that the ride from hell. I felt so dizzy and nausiated the whole way. My mother-in-law drive me on the 20th, but again had to take the bus home. I am still unable to drive due to the anxiety I feel at the prospect of it. I am terrified that I will get stranded somewere or become so disoriented that I will cause an accident. At work, my performance is suffering to the point that my boss has arranged a meeting next week to discuss it. (I get up at 5:40am in order not to be late and get hime at 7:45pm). She thinks because visually I appear fine, that I am not sick. Just so you can understand, this is my dream job. This opportunity to work for her at my pay scale or someone of her callibur is not likely to happen again. She is the attorney, I am everything else. Receptionist, office manager, paralegal, you name it, I do it. If I cannot be there, I will lose my job, but in being there, it seems like I will lose my job which only adds to my anxiety. I think to myself every day "you love to drive, you did this everyday, why now? Why can't you do this?" I continue to have the popping ears, my body rocks back and forth (on the inside), I am weak, dizzy, feel faint, fatigue, sweats, tremors in my muscles, clumsliness, brain fog, confusion, and probems in moving vehicles and sometimes infront of the TV. The drugs help get me to and from work, but make me tired as does the Labs. How did those of you out there explain to your boss what is happening to you? I would a least like to explain to her what a day is like for me. I am thinking of asking her to bring in a temp to cover for me, but we really need the money and I don't want to lose my job. I keep telling myself it would be best to put my health first, but I am scared to lose my job. Has anyone out there dealt with this situation? How did you handle it? I know after spending 3 hours reading every posting that I should just be grateful I can drug myself up enough just to go to work, but this is no kind of life. I am so afraid that I will be one of those who cannot drive for months. I already feel agorophopic and have a high anxiety level when I leave my "comfort zone" which consists of my home. I can relate to the people who say they are afriad it will happen in a place where they are unable to get back home (panic and severe anxiety that I will pass out from the dizziness). I get the "jello legs" and all. My husband cannot help due to his work schedule and the help from my mom is limited due to the same. It took me two and a half years to find this job. I am hoping for some sage advice. I am open to any and all suggestions. Heather

Heather - all i can say is hang in there - and maybe it is a good idea to get a temp in to cover your position for a couple weeks...

George - How long were you off work for??

My situation -

((Maybe everyone can comment on how far they think i am??)))

I can get out the house for about 30 minutes - 1 hour at a time & I Still dont have any energy,

But I can watch DVDs/movies easily, I can work on my computer at least half of the day - to a full day, and I sleep well at night, although i need more sleep now..

My main problem is energy - - and also public transport - tubes/trains/cars also affects me - get very dizzy and feelings that i am going to pass out

Heather --

You have to stay strong -- these inner ear disorders cause very bizarre, scary and exhausting symptoms. You are doing very well to leave your house each day and go to work -- I never could have worked through the first part of my illness. I would find as much information as possible on the web and from your doctors to take to the meeting with your employer.

Most people know nothing about inner ear disorders and how debilitating they are (I knew absolutely nothing about the inner ear until I came down with this). Your employer probably is equally clueless. Take information from the medical web sites and ask your doctor for some type of written information that explains your illness and how debilitating it can be. This may help her understand how you feel.

Hang in there -- Mary

Hi Dee,

I first had lab on 4/11/04. Took off 4 weeks then went back to work for 4 weeks then took 2.5 months off.

I have been back at work for 2 months now, but still have labs. e.g i just went for a walk and the ground was moving under me. In total 3.5 months off work is a long time, and i guess i was waiting to get back to normal. Lucky i pushed myself to go back otherwise i would still be off work. (not a good idea given we have a baby due in 5 weeks). When i am sitting at work/ on the train/home i am fine, when i walk thats when i have the marshmellow feet. I am at the point 0f 7 months where i have started to get my life back and can function normally with some difficulty.

Dee i have found that walking along a train platform makes me dizzy, as doo long corridors , supermarket aisles e.t.c

I too feel like sometimes i am going to pass out but i have had this for 7 months now and never have , so i take solice in that fact.

I have sad this before, in my experience i have found the really BAD dizziness where i feel like i am going to pass out i find is more related to my breathing/ hyperventilating....i read somewhere on the net that labs causes anxiety in lots of people that have this disease.

Not saying this is applicable to you but it definitely was to me.

If i get back to where i was before this affected my lie it will be a bonus. Having sat in Neurologists, cardiologists, and ENT specialist waiting rooms i have seen a lot of sick people in the waiting rooms. I think to myself there are worse things out there.

George

dont be putting your stupid advertisement on this website know one cares about your out of style clothes

mens dress clothes there ugly as heck i heard that company rips people off.....please not one person on this website buy those clothes there all rip offs.....

Hello to everybody I have not been on this site for a while, I had Labs last november and now I am 99% again, you do get over it, just hang in there. Plenty of rest

reguards

Good news, Stuart!!!

I am about 80-90% back to normal depending on a particular day. I have been sick from November 2003 (fifths bout of labs/BPPV/perilymph fistula in my life). I still have problems working on computer, sensitive to loud sounds, my own voice, too much visual activity around. I agree, that plenty of rest is essential, as well as moving around at your own speed (not faster, than your brain allows you!). And a lot-lot-lot of patience.

Good luck, everybody.

Anna

who are these jokers on our website?????

Those are comment spammers, Chad. Sharp Blue gets attacked several hundred times a day, but they're mostly blocked by my spam filters. Usually a handful get through each day and I have to update the filters to block them and others like them in the future. I've been away on holiday for the past few days though so I haven't had time to despam the pages until now.

Hello everyone, I have now recovered from labs after taken a medicine called carbo veg.I am now able to get straight up after waking without any dizziness.I had to keep turning over in bed to see if it was a fluke or something because usually i would be sick doing that but it has gone.I took the medicine for 5 days before I saw an improvement,it actually got worse in the first couple of days.I am also taking 1000mg of vitamin c a day which has help because my some of my family have just picked up a cold, thankfully i haven't. Dont just sit there waiting for it to go away,try different remedies like herbal and homeopathic ones. I wish you all the best.

Bye.

Hello everyone, I have now recovered from labs after taken a medicine called carbo veg.I am now able to get straight up after waking without any dizziness.I had to keep turning over in bed to see if it was a fluke or something because usually i would be sick doing that but it has gone.I took the medicine for 5 days before I saw an improvement,it actually got worse in the first couple of days.I am also taking 1000mg of vitamin c a day which has help because my some of my family have just picked up a cold, thankfully i haven't. Dont just sit there waiting for it to go away,try different remedies like herbal and homeopathic ones. I wish you all the best.

Bye.

hi - just to update. I have had Labs/Vestibular Neuritis since February. I would say I have improved another 10-15% in the last 6 weeks (since my 1st visit to the ENT.) After my 2nd visit a few days ago, we decided I should have an MRI and start VRT. Hopefully, that will speed up the recovery process. My improvements have come in the way of: increased comfort level and endurance in walking (I try to walk at least 45 minutes a day), less headaches, less brain fog, less anxiety, and less vision strain.

Dizziness is at its worst when I am lying down, especially with my eyes closed. Also have trouble looking up and down when I walk (I understand this is something you practice in VRT.) So all in all, I am improving albeit very, very slowly.

Here's an interesting story I have been keeping an eye on:

http://arstechnica.com/news.ars/post/20041123-4419.html

Good to know that for any of us in it for the real long haul, there is help and another option coming i.e. all these doctors who say "permanent" can shove it.

Hi all - what is carbo veg? Anyone know? The fact is inner ear damage cannot be cured by anything other than VRT and time - I am up for trying things like gingko but homeopathy and stuff are really for infections. Those of us whove had this a long time, know that damage jas occurred and no herbal medication will help this. Its brain compensation that matters. Just curious about the carbo veg thing...

Hugs to all xxx

Jayjay,

What is carbo veg? Like Emma, I have never heard of it, although we are both sick for years and have done a lot of research.

The most important thing, that you are doing better (no matter - with this carbo veg or without it.)

Anna

Hi, Homeopathy is not for infections only,it is not only for the physical symtoms but for the mental ones as well.It consist of animal or plant extracts and the remedies have no side affects.Carbo veg is a vegetable charcoal, made from beech, birch or poplar wood.It has a lot of properties for a range of benefits ,some of them being vertigo,congestion,pulsation and palputations.The mental side remedies the problems of anxiety at night,insecurity,the desire for open air like keeping the windows open which I suffered from. I tried two other remedies first with no success.The first being conium which worked for some but only help a bit for me,and the second being cocculus which had no effect at all.They are personal medicines which is why you must answer some questions about your personal state,for instance,you may get a different medicine if your more dizzy lying down than sitting or if its worse looking up than to the left or right. Nobody has mentioned it on this site before and I feel that some people think that it is rubbish,but this is the second time i have had labs so i thought homeopathy is worth a try. It took five days to have a effect.I had to keep rolling over in bed to make sure I wasn't being taken for a ride.I went to work today and i was so happy to be amongst other people again. I am still not 100% but at least the room doesn't spin anymore.My doctor told me to wait a week or two before sorting out my problematic sinuses even though right now they have stopped bothering me. You can find alot at the abc homeopathy website. I have posted on their forums too.Best thing to do is go and see a homeopath.

My fourteen weeks of hell is over.I hope you all get well soon.

Bye

jayjay

Has anyone tried Aloe Vera Juice or Cranberry juice to help with this Virus in the inner ear?

I saw the Carbo Veg 30X 250 on a website www.elixirs.com they also had a product called Inner Ear/Labyrinth of Ear 4C 1 oz pellets.

Has anyone used any of these and do they work for Lab.

Please let me know.

Hi, guys,

David - As you know, there is no specific treatment – medicine or anything else - for viruses. It has not been invented yet. So-called antiviral drugs cause more side effects, than do good.

A good thing is, that our body fights viruses and eventually gains victory over them (if the body is strong enough!). It is in our power to make our bodies stronger – vitamins, exercises, healthy food, plenty of healthy drinks (including Cranberry juice, Aloe Vera juice, or any other – answering David’s question), no alcohol or smoking, plenty of rest. Just healthy lifestyle! It does not imply, that you will not be hit by a virus, but if it happens - you recover faster and with less bad consequences. This is my understanding of fighting virus infections.

Anna

You will need to speak to a homeopath really to get the right medication for you.It Depends on your circumstances and personality.If you dont have a homeopath in your area,then visit http://www.abchomeopathy.com/forums.php and post your problem.There are a few experts there that are very helpful and the support there is wonderful.All of us must understand that labs is a natural disease(as bad as it is)and sometimes you need natural medicines.

And in relation to emma's comments,viral labs very rarely causes actual damage,The virus lasts a few weeks but then leaves inflammation for the rest of the time you have it.It is this inflammation that you must get rid of as I did.Homoepathy cured me in just five days so as far as i am concerned,i will from now on always use that medicine.What you are saying about vrt and time is not giving hope to others.Remember when you have labs,you see the world through a negative lens.Most ailments have remedies,so does this.

Also,do a search for natrum mur and you may be suprised about what it does.

Hi All,

I am grateful for this supportive community. Two items: 1) Can you tell me what VRT stands for? I have seen this referenced numerous times. 2) Research on zinc lozenges for cold viruses is compelling. A number of double-blind randomized controlled studies(the gold standard in research) have found zinc lozenges to reduce the duration and severity of cold viruses. Best results when taken within 24 hours of initial symptoms. My personal experience has been excellent with this. If vestibular neuronitis has its onset with viral infections, perhaps zinc can help reduce recurrences.

Everyone hang in there,

Dan R.

I also found a product called Vitacel GH7 it was at www.cellhealthmakeover.com/labryinthitis.html does anyone know about this product Vitacel GH7

thanks,

Vestibular rehabilitation therapy (VRT) is a highly effective way to substantially reduce or eliminate residual dizziness from labyrinthitis. VRT works by causing the brain to use already existing neural mechanisms for adaptation, plasticity, and compensation. The direction, duration, frequency, and magnitude of the directed exercises are closely correlated with adaptation and recovery. Symmetry is more rapidly restored when VRT exercises are specifically tailored for the patient

Vitacel GH7, Inner Ear/Labyrinth of Ear, Carbo Veg - all of these things will not hurt, definitely (although, I personally have never heard of them before, and have never found anything about them in medical scientific literature). VRT is much more effective in restoration of long term damages to the inner ear if they happened during acute labyrinthitis. Even your natural movements, everyday chores, simple walking - are all some kind of VRT exercises because they involve different movements of your head, eyes, trunk and different positions of your body in respect to gravity. If you do not have a VRT specialist at your town – do not be upset – just keep MOVING as much as your situation allows you. Stay as active as possible!

Anna

I agree Anna.

Jayjay - I am not being negative, merely staing the facts. Homeopathy etc may well work and im glad it has for you but there is no proof and the specialists certainly arent prescribing it. They are prescribing VRT which has shown to be effective. I have tried homeopathy with no success, it is not a cure all for all.

I am merely stating what a top neurotologist has said to me about inner ear damage and labyrinthitis. Im afraid it can and does cause damage. Inflammation cannot last 4 years in some cases. My specialist has said my tests showed damage. SOME cases of labyrinthitis inc mine cause permanent damage and the brain must compensate.

It is the homeopathy perspective that it is inflammation in all cases and not damage because they think homeopathy can help everything.

As I say im not doubting homeopathy but just saying that a) damage can occur and b) the current treatments known by the medical community that works is VRT.

xxx

To anna and emma

All i have to say is that i tried homoepathy and i am living proof that it worked for me.I dont care if people say that it not proven,if it fixed my problem without any side affects whatsoever,then thats good enough.I am not here to argue about homeopathy vs allopathy.I only wanted to let you'll see at the time of infection what remedies i was going to try and post the results.It seems the result is not wanted here so i'll let you all continue with your togetherness. There is no need to reply to me as i wont be visiting this site again.

p.s labyrinthitis isnt ear damage,it an infection.Not everyone's ears have been damaged.What do you say to someone who has had scans and the doctors found nothing? Bye

Hi emma

If you are saying it may work and it did for me,then what exactly is your point?If someone had success in whatever treatment they used then wouldn't you encourage others to try it?

If test showed damage then i dont doubt that vrt is an answer,but what if there isn't damage?

Patients who are in the midst of a labyrinthine storm secondary to labyrinthitis, vestibular neuronitis, or active Meniere’s disease will not benefit from VRT. In cases where the disorder is still active and not yet stabilized, the brain is not allowed to recognize what it’s being asked to fix. Once the condition has stabilized and the attack(s) have subsided, the brain will have a much clearer picture of the asymmetry it must acclimate to. That was taken from the american institute of balance. So what I am saying is nothing is guaranteed to work even vrt so if anybody comes to this site with something that helped them,dont knock it just because it didnt work for you. The doctors that diagnosed me with labs told me that there wasn't much they could do except give me stemetil.That isn't an answer from the so called professionals is it?Stemetil caused me drowziness as a side affect.So its a good thing that i am open minded enough to try alternative medicine dont you think?

This week was my first week back at work without having to use any medication at all where as the week before last seemed like there was no way back to a normal life.

I came to share my experience,I wish you all the best.

Bye.

Hello everyone, Just want to update you as to my progress. I have had the "problem" since Dec. 8, 04. I had blown my nose hard and immediately lost left ear hearing, balance and then became nauseated and started vomiting. Was in hospital 2 1/2 days, then home for a month off work. It has been like watching the grass grow recovering from this. I am now 90% to the good. Walking up stairs makes me feel goofy. Looking up to get something off the top shelf does the same. Walking in the dark also is bothersome. When driving, taking off from a stop light sometimes makes me feel like I am leaving a part of my head behind, but then it catches up after a bit. I am not talking about a jackrabbit start either, just normal driving. If I am around a constant loud noise, like loud music, or machinery, or a buzzing sound, my hearing in my affected ear goes down for awhile. For a period about a month or two ago, sometimes when talking to someone, my hearing would also go down for an hour or two. It always came back thank God. I still get tired more easily than normal. When riding in a car, sudden moves, or turning a corner too fast still bothers me. But all in all, I am very happy to be at this point and think that I can live with this level of problem if needed. Just hope like everyone else here that I go back to 100% normal someday. Best wishes on everyone's recovery from this devastating disease. People around you just cant relate to what you are feeling and experiencing. I stopped going to the doctor after 2 visits because I realized as a nurse that he was not going to be of help, just get some money out of me and my insurance. I just got plenty of rest, ate right and was patient. Linda

I found this website that has amazing information about vertigo and Labyrinthitis. Everyone should take a look at it to understand treatments and who to see. http://www-surgery.ucsd.edu/ent/DAVIDSON/Pathway/Vertigo.htm

I have heard that the use of Procaine Hydrochloride works very well for labyrinthitis. Has anyone heard of this or used it. It is also known as GH3 created by Dr Ana Aslan.

Please let me know!

Jayjay,

My last comments on the matter but just wanted to say:

a) After the 3mth mark or so, if symptoms still exist, labyrinthitis has gone and inner ear dysfunction remains...I am talking about the long term sufferers re: VRT and NOT those who still have the infection.

b) Just because tests show nothing, doesnt mean there is nothing. Inner ear testing can be unreliable.

c) I agree not all have damage though long term sufferers do have DYSFUNCTION which is on a par to damage.

d) I agree wholeheartedly agree many professionals dont know much (your stemetil experience). Not saying they all do at all. Am just saying my Neurotologist who is the top in the Uk DOES!

e) I know that Menieres etc does not respond to VRT as it is unstable. We are not talking about that here - Labyrinthitis does not consist of attacks so after the infection and the dysfunction remains, VRT is helpful - thats is what im talking about - not any other inner ear disorder...

f)Great it worked for you but I cant support it and say it works if I havent tried it or it hasnt worked for me - can I? You can support it which is great.

I have never said homeopathy doesnt work - but it is not prescribed by most specialists - VRT is - so that is what I inform people about - not things I have not heard solid proof about.

Of course you are welcome to share what has worked for you - that is excellent and thats what this site is for. But I just dont like people dismissing VRT or saying that inner ear damage cant occur.

I think the key is here - that - without face to face interaction, things can be misinterpreted. You are talking about the initial stages of labyrinthitis and perhaps other inner ear disorders also. I am referring to treatment for long term sufferers - where labyrinthitis has long gone - but its effects still remain.

xxx

Emma and Jayjay,

Actually, I think you are both right in most of your statements.

To my mind, the hardest thing is to determine from all the tests, from your doctor’s experience and from your own symptoms and intuition – ON WHAT STAGE OF THE INNER EAR DESEASE YOU REALLY ARE. Also, you can have several problems going simultaneously in your inner ear, or both ears (it is possible, unfortunately).

If you are still having infectious virus, or remaining long term inflammation of the inner ear structures, caused by infection – your vestubular asymmetry is not final yet. VRT might be not very helpful at this point, because your inner ear structures are still changing. I think, that combination of movement and rest is the right thing at any stage of the inner ear disease.

Unfortunately, in some infrequent cases (Emma – it might be in your case!) this inflammation of the inner ear structures (like in any other organ of our body!) can go continuously for months, or even years. I think, that in my case I am still having some sort of small, but continuous inflammation of the inner ear - that is why my brain cannot compensate to these ongoing changes for more, than 18 months.

It would be great if this homeopathy medicine mobilizes all the internal strength of my body and I recover from this ongoing inflammation. Although I am a “nonbeliever” it is worth trying! I ordered Carbo Veg online, and I am going to give it a try.

Linda – I am absolutely happy for you. To my understanding – your symptoms are classical symptoms of perilymph fistula, which is as they say “highly curable with time”. I wish you 100% back to normal and no recurrence.

David – thank you for the website link – I will check it.

Everybody, stay strong!

Anna

Anna - thanks for your comments. But I dont really believe that because you have it years (and it is not that infrequent unfortunately) it is inflammation that remains, I have been told by my specialist and read many articles saying it is damage of the hair cells which cause dysfunction so that the ears send conflicting messages to the brain hence the symptoms. Inflammation occurs at the start but not after years. I am doing VRT and therefor my condition is not unstable.

Its an interesting debate anyway!

Hope everyone is ok.

xx

HI all,

Past few days i could see myself fully recovering. Probably back to 90%. However i have been having allergy desensitisation of house dust mite shots (for allergic Sinusitis) every two weeks for the past 6 weeks. I had one yesterday (the dosage increases each time ten fold)at 1pm. I went home from work and felt really nauseus , room started swaying back and forth, marshmellow feet were back, and things started to shift ever so slightly in my gaze.

What a nightmare i feel like i a am back to where i was at my worst.

How depressing. Today i feel marginally better but it is definitely back.

Has anyone had allergy shots and have they exacerbated their Labs at all?

George

Hi everyone,

I've been reading a fair bit of this forum. I think you are all amazing for coping whith Labyrinthitis. Your attitudes are awesome.

This is my story if you want to read. This is my first post but I am looking forward to posting more with you all after today.

I got Labyrinthitis about 8 weeks ago. It was during the final week of my Police academy training. It was terrible. Not only was I amazingly dizzy for a week (or four), but I had to march for hours a day and attend various lectures. There was no way I was piking out of these of course, I had worked too hard to give it all up at the end because I was feeling sick. But boy was I sick! Amazingly, I was able to stand still for a couple of hours during our aptly named 'pass-out' parade. This was the hardest week of my life.

After the third day I went to the doctor feeling anxious and worried. She explained to me what it was, and this helped me a bit. I took Stematil for 2 weeks. I don't know whether this helped much, but I didn't feel as nauseous.

I felt like I was on a boat the whole time. I went on a cruise once, and after we went on dry land I felt like I was on the boat still, for about 2 days afterwards. This was similar, but ten times worse. I could hardly eat breakfast. I tried to keep my food down, and I didn't vomit at all, although I felt like it numerous times. Of course, people would have thought I had drunk too much the night before. I couldn't explain it to anyone, nobody understood.

ANYWAY! The sudden up/down/sideways feelings gradually lessened over about a month, but I still feel foggy, inattentive, and tired. I am feeling anxious lately and a little depressed. Although this may be due to the sudden change in lifestyle and job. Also, having bad days make me pissed off. I got the highest fitness score at the Academy. I was active and healthy. I used to run 18kms a week. I could bench my own bodyweight. I had my first boxing match and won. Now I feel a bit like an old man! I haven't been able to exercise at all, and feeling my body disintegrate is depressing.

My first few days on the job were terrible. I was walking the streets in a Police uniform, but feeling like I should be in bed. I was constantly struggling to appear composed and professional, but I wanted to throw up all over the person I was talking to. It took a lot of will power and tough grinding mentality to get through the 12 hour shifts.

Now I feel a bit better. Amazingly, when I'm at work, I feel my best. I am able to function effectively as a Police officer, andnot compromise safety. Of course, If I felt I was endangering anyone I would take measures to counter this. It's really only my days off that I feel terrible, and have to sleep all the time. As you all have noted, the shower is weird. It's hard to get a bearing on an enclosed space, especially when closing your eyes and rubbing your head with shampoo!

I am going to try acupuncture soon to get over this foggy head. My balance fine, i just feel weird. The worst bit is going from an active, fit person with no health problems to someone who is constantly feeling 'weird' and just not the same person! I still have my sense of humor though. Try me. From most accounts I think I should get gradually better over the next few months. I have real understanding and sympathy for the people who aren't even as fortunate as me. Thank God I have people I can talk to.

I look forward to talking with you more and progressing through this together.

George,

I had a cold 2 weeks ago and a flu shot last week. Neither seemed to affect the Lab much. Can't vouch for an allergy shot tho.

Hello anna

I have already stated that carbo veg worked for me but others medications didn't.I read online that some people attained success from conium but that didn't work for me.So i dont know why you have ordered carbo veg without going for a consultation first.It's a very personal way of treating people,there are a lot of questions you have to answer about yourself.It not a case of being a believer or not,it a case of if it helped someone,(homeopathy that is) then it's worth a try.I thought it was a load of rubbish too when the first two remedies didn't work,but i knew that it was a question of getting the right remedy and thank god i did.I work with chinese people and some of the medications we sell are a real wonder.They won't touch western medications such as antibiotics from our doctors.They are always telling me that our doctors are rubbish,that our doctors learn the medicines but don't learn the human as they put it.The way I see it is the east and far east have their way and the west believe in their way.Both are 'unproven' to each other.I have tried acupuncture the last time with no success but i wouldn't discourage anyone from trying it.Seven weeks after i first had labs it died down for two weeks but then i caught a cold and it flared up again.Now I have a cold again (sore throat,blocked sinuses and cold shivers)but this time no return of labs.I definatley believe it is because of the medicine.I am now going back to try a course of natrum mur.It's a salt they helps the body to distribute water properly as well of a lot of other functions.It is suppose to be good for sinus problems also.At the end of the day,we are telling each other of our experiences so that something good may come out of them for others.

Hi to everyone,

My advise to everybody thinking of trying out alternative medicine is to see a specialist in that area or talk to them online.You would for a allopathic doctor so it must be the same for all medicines.How else would you know what potencies to take and for how long?

Cop - you should try to remain as physical as possible for compensation sake. Your body is going to need to rely on your endurance, balance, and posture more then ever.

There is another good board for info on inner ear problems here: http://www.healthboards.com/boards/forumdisplay.php?f=76

Thanks Wnb, I'll keep it up. Do you or anyone else around here have MSN? It would be good to talk on there.

Hello to all,

Does anybody know what the common factor is involving all of us,there must be one,i mean none of my family have ever had this illness and it has been said that you can't pass it on.And some of us has had it more than once,i had it this same time three years ago.Any ideas?

Labyrinthitis is caused virally so its just luck of the draw. It can reoccur hence you having it before - it isnt another viral attack, it is just decompensation - whereby the brain forgets what it learned when it compensated first time around.

Hope this helps xxx

Em, I don't understand. How can the brain suddenly forget what it learnt?

My acute symptoms have gone a bit after 8 weeks, but my brain must still be struggling to compensate, because I get them back (tho not as severe) when I'm tired and stressed.

I think my ears are still a bit messed up, and sending erratic messages to my brain. My brain is just more able to ignore them when it's fresh. That's my meagre theory. I'm not an expert, but I don't understand otherwise. Can you shed some more light on it please?

Yes sure....

Take from vestibular.org.uk:

Decompensation. It's important to remember that even after the symptoms go away, the balance system remains injured, and the brain has simply adapted to the injury. For many patients, dizziness will return months or years after compensating for a balance system injury.

Decompensation simply means that the brain has 'forgotten' the fine-tuning procedure it developed during the chronic compensation phase described above.

Events that can provoke decompensation include a bad cold or the flu, minor surgery, long vacations, or anything that stops normal daily activity for a few days. Recovery after decompensation is exactly like the recovery that occurs during the chronic compensation phase. Movements and activities are the stimuli the brain needs to fine-tune the system.

Usually recovery after decompensation is quicker than the recovery after the initial injury to the balance system.

Hope that helps xxx

Hello; thank you so much for this site and all the wonderful stories. I have had labs since 16 dec 04. Unfortunately, there is permanent hearing damage in my left ear, although it did come back a bit from the initial infection. There is accompanying tinitus that is quite annoying. Balance wise I am mostly recovered, except when I am tired. I wear yellow tinted glasses for driving, and this really helps. I drive a lot for my work.

I have constant tingling (like pins and needles) in my feet and calves. I can't seem to get the medicals to listen to this one. They just shrug and go on to something else. Anyone else have this symptom? Any suggestions?

Lorraine

Hi Em,

Are you the author of that fantastic site? It sounds like you have a wealth of knowledge. Your site was one of the first I came across. It scared me a little because I read stories which were far worse than mine, and remember thinking that I could be stuck with this for a long time too! I would love to pick your brain and ask you a few more questions. This forum takes so long for everyone to answer etc though.. have you got MSN?

Oh yeah, also I was wondering if anyone could shed some light on my 'recovery':

Ever since I was diagnosed with labs, I have been working 12 hour shifts. These are 2 day shifts, followed by 2 night shifts, then 4-5 days off. (repeat etc) This really tends to throw out my sleeping patterns. I just have to get sleep when I can.

Does anyone think this would have a negative impact on my recovery?

Cop

Glad you liked the site. Actually our cases (mine and Ilias) are quite mild compared to some in terms of symptoms and inner ear damage but yeh weve had it a long time. The site is really intended to show people this CAN indeed go on unlike most GP's predict and aims to help long term sufferers realise they are not alone or abnormal.

Sure - pick my brains - email me at the address on site and we'll go from there...

xxx

Has anyone gotten the hearing back after comlete single sided deafness? Did you take inner ear steroid injections? Did that help?

Steve

Hi, everybody,

Steve – you asked about direct inner ear injections of steroids. It is a relatively new procedure and for now scientifically it has not been proved to be helpful. There are many possible side effects of this treatment with no improvement of dizziness. Look at the following article written by Dr. T. Hain, who is very prominent in the field of dizziness and vertigo and who is realistic in his prognosis. http://www.dizziness-and-balance.com/treatment/it-steroids.htm

He says, that such a treatment is the “last resort”, when a patient suffers from SEVERE attacks of vertigo for a long time. I am pretty sure, that nobody on this site has tried it yet, neither have I. Frankly speaking, I would not suggest anybody to try – it can make things worse (just my intuitive feeling). Even for myself, who is a long term recurrent sufferer (5 major bouts of labs/BPPV for more, than 30 years, on and off), of for Emma (more, than 2 years of persisting symptoms) I would not advise to be a “Guinni pig” for risky and unpredictable procedures.

Cop – I read your story (how much it reminds me mine!). I think you are a very strong person. You are doing the best thing you can do for your recovery – you keep MOVING and you keep on going with your life the best you can.

George – you said, that having bad days after relatively good ones makes you extremely frustrated and depressed. I think, that it is very natural for human nature. But, when things go wrong, just continue to tell yourself: “After bad days – there will be good days” (which is absolutely true! I can sure admit this from all my negative and positive experience).

Jayjay – I started to take Carbo Veg because at least one person (you!) had a positive effect from it. It is worth trying.

Hi, everybody,

Steve – you asked about direct inner ear injections of steroids. It is a relatively new procedure and for now scientifically it has not been proved to be helpful. There are many possible side effects of this treatment with no improvement of dizziness. Look at the following article written by Dr. T. Hain, who is very prominent in the field of dizziness and vertigo and who is realistic in his prognosis. http://www.dizziness-and-balance.com/treatment/it-steroids.htm

He says, that such a treatment is the “last resort”, when a patient suffers from SEVERE attacks of vertigo for a long time. I am pretty sure, that nobody on this site has tried it yet, neither have I. Frankly speaking, I would not suggest anybody to try – it can make things worse (just my intuitive feeling). Even for myself, who is a long term recurrent sufferer (5 major bouts of labs/BPPV for more, than 30 years, on and off), of for Emma (more, than 2 years of persisting symptoms) I would not advise to be a “Guinni pig” for risky and unpredictable procedures.

Cop – I read your story (how much it reminds me mine!). I think you are a very strong person. You are doing the best thing you can do for your recovery – you keep MOVING and you keep on going with your life the best you can.

George – you said, that having bad days after relatively good ones makes you extremely frustrated and depressed. I think, that it is very natural for human nature. But, when things go wrong, just continue to tell yourself: “After bad days – there will be good days” (which is absolutely true! I can sure admit this from all my negative and positive experience).

Jayjay – I started to take Carbo Veg because at least one person (you!) had a positive effect from it. It is worth trying.

Emma - it is something new (a new theory, perhaps) about the brain, that has to de- compensate again because it suddenly “forgets” its previous compensating. Maybe – this is what happens to me form time to time (recurrent bouts of labs/BPPV, or whatever it is).

Hugs for everybody who struggles with this monster.

Anna

OK, I have read that article. Has anyone got back ANY hearing after complete single sided deafness spontonously, or with some kind of treatment?. I have been deaf for 6 weeks after a 1 week hospital stay for Labs. Dizzyness is not so bad , just can hear .

Thanks for the info!

Steve

should just can NOT hear

Hi

Steve – as for me, I did not have any hearing loss - on the contrary, my sensitivity to sounds is much higher, than normal (this is called HYPERACUSIS). Sounds, especially motor roaring and humming, makes me literally dizzy. I have to protect my ears with noise canceling earphones almost all the time. I have heard, though, that hearing after labs restores with time. I suggest you to visit the following site and to ask your question on their board. http://p084.ezboard.com/bdizzylounge There are many people with different stories on that site.

Anna

well mine came back and i was doing so well...and im out of sick days so im suffering at work can barely look at the screen...it sucks...go out in car and sleep at lunch...thank god i dont have the true spinning...i just have glassy eyes...super spacey feeling ....help me out through work this week

Chad - hold on! Sleep and rest a lot at home. If you have a chance - take a nap in the car during lunch. Just close your eyes from time to time in front of the computer. I do all these things at work (I am working a full day). It is not easy - to work being a "Zombie" I understand you completely! Just do it!!!

Anna

it came back cause i took some cold mediciine this weekend

when i was almost 100 percent it still when i got stressed acted up and became alittle more spacey why is that....because your brain isnt used to that part yet of being stresed???correct

Chad, sorry to hear it came back mate.

I had a great afternoon when I woke up, just felt foggy, no up/down feelings of movement. It was the best I have felt since I got labs!

As I got fatigued throughout my shift though I felt them more frequently. The last 2 hours of my 12 hour shift were the worst, but even they were better than my average feeling last week. I'm feeling hopeful! But I do notice now that it gets worse with fatigue.

At the start of my shift a guy was at the front counter of the station and all of a sudden he pulled out a knife and brandished it towards us. we got the knife off him and took him to the ground. I was actually able to vault the counter without falling over! I am starting to believe I am healing. Now I'm going to bed though... I'll see how I feel when I wake up!

Good luck - Cop and Chad. If you want to hear my experienced opinion - you are both quite close to your full recovery. There can be several minor set backs, but do not be frustrated - it is the nature of this illness.

Anna (four times recovered, on the way to recovery for the fifths time)

Sounds reassuring Anna! How long has it taken you to get to this stage?

so your saying this medicine put me back i used to feel....like in the begginning and i was feeeling so good....your saying it will heel faster than it did before...this is just maybe a week or two setback...i feel horrible i should have never took that medicine

i also had the nose spray and i think that really hurt me...i feel exactly like i did week 1 or 2 with head pains again....blood shot eyes...its horrible...i love to sleep again...AND I WAS DOING SO WELL...i may never take medicine again if thats the deal....

Steve; I had total hearing loss in my right ear initially. There was a roaring all day and I thought I was coming down with a cold. I picked up the phone when I got home and NOTHING. Could not hear the dial tone. The vertigo manifested in the morning when I woke up. The doctor prescribed ++ dosage of steroids right away. This continued for 10 days and then a tapering dosage was started over about 3 weeks. A hearing test at this time showed no hearing in the upper range, some in the mid range, and a bit more in the lower end. After 2 months the audiogram showed normal lower range, moderate mid range, and very limited upper range. Word recognition had improved to 65%. It has now been six months since the labs first manifested. I can hear a dial tone with the right ear, but cannot understand voices -- handy for unwanted telephone calls! All along I have not heard my husband snoring if I had my good ear buried in the pillow. I have noticed that I can hear him again, but it is still very muffled. Darn!

I rarely have to use an ear plug anymore to block road noise when driving. I think this means that either my hearing is still improving or I am learning to "filter" some noises.

I have tinnitis as well. I don't think this is diminishing. It is hard to tell as it is constant, and worse when I am tired or stressed.

One day at a time, and each one is different! Lorraine

QUICK QUESTION....i have labs the type where the room doesnt spin completely just the spacey headed feeling...MECLIZINE really couldnt do nothing for that uh???????just if the room is spinning or your feeling nausated uh?????

Chad - you are right. Meclizine does not help in your situation. You do not have this spinning of the room around you and nausea, which is worse, than your spacey feeling (beleive me, I had both, so I can compare). Lorraine - you said - One day at a time, and each one is different!- You are absolutely right.

Anna

Chad - you more than likely will have good periods then some bad ones. The nice thing you will notice most of the time (not all) is that the good periods at some point will gett better and longer and the bad will get shorter and easier. This is the process of learnign to compensate for a damaged vestibular system. Now sometimes I have a worse time than other. 2 days ago I ended up in the er beacue I just freaked out to much over all of the sympotms (to me right now the loss of brain power or cognative tought is the scarriest) i know I am not a great speller but when I just could not get my brain to type well I totally paniced. Sure I was miseeralbye and frusterated but I have to keep telling myeself I have an Illness a REAL thoug not life threating but a REAL ilness that rob's my quality of life and let myself feel bad for a bit. Then kick myself in the but and say well If I want to keep feelign sorry for myself then I will never get better so get moving and MAKE yoruself learn to compensate and re learn how to think whit damage done to your ear. I have been dizzy/fuzzy brained/depressed/panicking/and just feelign bad since 8/11/04. And am now about 75 to 80 % better most of the time. And am hopeing by 8/11/05 to be 95 to 100 %.

Emily

Hi all - my website colour has now changed - hope it is much more dizzy friendly ;)

Wishing you all a nice weekend.

xxx

Hi, guys

Emily – THANK YOU VERY MUCH – your post came just on time. I was really sorry for myself for being sick for so long. Usually, I am a person who supports others, when they have problems. But yesterday, somehow, in the end of the week (I am working a full week, 8 hours every day) I was so tired , felt really down and even thought, that I would not have enough strength to drive myself home (10 minutes drive) from work. You said, that you HOPE to be 95 or even 100% back to your normal oldself in August. Great intention – you can do it! Hope – that is what we need – that is what really keeps us going and struggling.

I am in to my 18th month of the fifths bout of the inner ear disorder. And I still keep hope, because I am definitely better, steadier and much less dizzy, than ….a year ago. How long this illness can last – what a great challenge to overcome it.

Emma - good decision on the color of your website - because the website is great (really supportive and informative)

Keep going, everybody!

Yours, Anna

I will deliberately not use that company, and I will advise my friends not to either. Nobody who uses this forum will ever click on its stupid spam links, and we all damn your pathetic spamming ways to hell. This is a genuine forum for genuine people. Rich, any possible way you can get rid of the above 5 posts?

By the way, I am felling much better everyone! Perhaps 85-95% at times, after 9 weeks. It's funny, I actually had a few drinks on the weekend and I think the alcohol cancelled out my dizziness.. I felt 'normal'.. weird huh?

when u drink your ok cause u dont care about it...but the next day your more tired than usual becuase your brain isnt used to being drunk and adapting to that.....it sucks...cause im a big drinker and this stuff is slowing me down.....

but i did hear drinking does not prolong the sickness it just makes u feel worse for a day or two afterwards.........

Cop,

When it comes to alcohol and dizzy spells this is what I have come up with. The damage that the infection did to our ear effects the way we thing. Like for me for 27 years of my life I knew how to walk, see, and move in one certain way. Then after the viral infection in my ear there was permanent damage and well I had to learn a new way to walk, see, and move that was fighting with the way I had used for the first 27 years of my life. Now when I take the anti-dizzy meds or have a few beers my brain does not put as much attention to the signals that are conflicting and well it is a bit easier for a small amount of time. Then the next morning I usually feel a bit worse than normal. So a bit of a trade off and like the meds no real long term help or solution. So go out have a good time and enjoy yourself if alcohol does not hurt. But remember it is a temporary fix like the meds. Not the permanent adjustment we are all hoping for.

Emily

Hi, My name is Lauren a 29 year old woman who has had Labyrinthitis for a little over a month now. It first happened at a weekend bachelorette party the next day, so I initially thought it was a hangover. I got some sleep that Sunday night and then woke up the next day and went to work...just looking at the computer gave me the spins...I went through 3 days of work like that, until I just broke down at work and my friend had to take me to the ER. I have since left work and seen a neurologist who did all the tests (MRI, ECG ets....) and all were negative...I then went to a Ear, nose and throat doc which dubbed it Labyrinthitis and gave me mezciline. I have taken it for about a month, and although I feel better in my house now....when I try and go out of the house and do anything normal ie: shopping, out to dinner etc.... it all hits me again that I am not better. I am trapped in my home and and it is taking a toll on my life and my fiancee who is somewhat supportive but frustrated b/c he just can't understand. THat is my frustration b/c there is no way anyone can understand how dibilitating this is until they have experienced it. To him and others...I feel like I just look lazy. I have left my job and have a new one lined up...but keep pushing back the start date b/c I just am not ready and do not know when I will be to resume a normal life. I looked for answers on the internet hoping to see that this will pass soon...only to be discouraged to find that for some this lasts years if not forever. I am sad and miss my old life so much...I have not been myself, only a doped up on pills shell of what I was. If this continues for "years" this is not the quality of life that i want to be living. I try and remain hopeful...but to wake up day after day feeling this same "dizziness"...it is hard. Thanks for listening. -Lauren

Hi Lauren; Hang in there! It will get better, it just does not feel like it now. I think I cried every day for the first 6 weeks. It has now been 6 months, and I can drive and go to the store and wear heels again and dance... Just about normal! Luckily I have been working on a special project for 5 months, so I could work alone until I was able to function around others, even from home if I was having a very bad day.

Take each day as it comes, some will be good and others not so good. Before you know it you will have days that are great! Really! Lorraine

Hi Lauren,

I felt like total crap for the first month, just like you have said. But it was heaps better after 2 months, where i am now. You WILL notice a difference, and WILL get better, take it from all of us here. It just takes time. Try to listen to all that "I have it for a reson to enrich my life" mantra. You will discover what means the most to you, and appreciate your health more etc etc...

Keep a diary of your symptoms and how you are feeling. You will notice that it gets better after a while. But once you accept you have it, you will improve. I was in denial, and that is worse!

im at 4 1/2 months and believe me i am about 85%.....i think with in a month or two ill be 100%...at least i hope BUT IT WILL GET BETTER

Hi,

Lauren - I have already mentioned many times, that to keep a diary of your recovery (because even occasional setbacks are still a part of recovery process from this disease) - is a very good idea. Improvements can be very small and very slow, with "ups" and "downs" - but these improvements DO OCCUR. Lauren - believe me, that EVERYBODY with this disease has problems with lack of understanding of his or her symptoms and his, or her limitations from your loved ones, friends, even from doctors. We are perceived as lazy, inattentive, "strange", “weird” (all not true!), “depressed” (this is true, but who wouldn’t - with our symptoms?!). I found this lack of understanding the most difficult part of my problem. That is why I try to find every possible information on this illness and try to explain it to others. Be your own advocate! You are also very welcomed to refer your fiancée or friends to me directly, or to Emma, Emily, Cop, or anybody on this site. Am I right, folks?

Everybody, stay strong! Hugs, Anna

Hell yeah! We're in this together, whether we like it or not. Personally I have found the information in this thread amazingly useful, most of all to ease my worries about it. It's so reassurring to know others are experiencing the same.

Yes - always willing to answer any queries via the site...Stay strong people! xxx

have a new feeling does anyones ear luck pop like really fast like 10 times in a few seconds....it feels real weird???

it just keeps like popping away like feels like putting a seashell up to it...like wind keeps flying around in it

Chad, no I haven't had the popping thing you describe.

Does anyone here live in Sydney? I thought it might be good for us to be able to get together in person once in a while. It would allow us to discuss things a lot more in depth, and put a face to some names. How would everyone feel about that?

Big Question!!!

(maybe em can answer this?!!)

How do you know if you have Labrynthitis

OR

Vestibular Neuritis (spelling is prob wrong here!)

I have been to an ENT who has checked my ears and said i dont have Labrynthitis...

How does he know?? Well i have the same symptoms --

And how do they decide which one you have??

If anyone is following wimbledon - Number 9.seed Australian Alicia Molik has withdrawn from wimbledon and if you read up on more news of her - they have diagnosed her with the Vestibular N.

How did they know if was this and not Labs??

Heres a news link here:

http://news.yahoo.com/news?tmpl=story&u=/afp/20050615/sp_wl_afp/tenniswtagbrwimbledonmolik_050615145410

What is the difference between the two??

All answers would be appreciated!!

Dee

Hi Dee,

Even though I wouldn't wish this on anyone, I am actually glad there is someone high profile who has this. I feel for Alicia though, I know what it's like to be fit and then being restricted! I actually tried to find a fan club site of hers so I could send her an email and direct her to this page. I thought she could benefit from our support. Also, I got my symptoms the same time as she got hers, so I wanted to contrast our progress.

I found the same problem with diagnosing mine. Apparrantly I had acute Labyrintitis, but I have had symptoms for 9 weeks now, and supposedly labyrinthitis is gone by a month. UNLESS I have permanent ear damage and I can't compensate blah blah blah...

Or I could have Vestibular Neuronitis, which can have similar symptoms etc.

I found a great site by trawling through posts on this one. It explains the presenting symptoms of Labs. + VN and shows the difference, plus treatment differences. Hope it helps:

http://www-surgery.ucsd.edu/ent/DAVIDSON/Pathway/Vertigo.htm

Also, anyone here live in Sydney and want to meet in person?

After a very sore throat in early Feb that came and went, the virus spread to both ears in late March. I had really bad back-of-the-head-or-neck headaches, earaches, constant dizziness and nausea, terrible tinnitus in both ears, especially the right ear. This was aggravated by stress or drinking. The only thing that seemed to help was: complete rest and sleep (at least 9 hours per night), daily multivitamins, and eating well. I suffered with this for almost exactly 8 weeks, then in late May/early June things improved. I can tell that I suffered some hearing loss and I still have tinnitus in my right ear. But overall I'm at about 90% with only occasional twinges of dizziness (usually at stressful times.) Thanks to everyone on this msg board- many comments were helpful and encouraging, especially reminding me to get out and keep moving so that my brain could start re-calibrating.

HI EVERYBODY. i'VE READ LOADS OF THE COMMENTS ON THESE PAGES AND IT HAS BEEN GREAT TO FIND PEOPLE SUFFERING FROM THE SAME COMPLAINT. I WAS RUSHED INTO HOSPITAL IN MAY (6 WEEKS AGO) AS I WAS SO SICK. I REALLY WANTED TO DIE! THE WORLD WAS MOVING SO MUCH I COULDN'T EVEN WALK TO THE LOO ON MY OWN! I HAD AN MRI SCAN AND THE NEUROLOGIST IN THE HOSPITAL SAID I WAS SUFFERING FROM OSCILLOPSIA!! THE REPORT ALSO SAID I HAD MASTOIDITIS AND SOME NARROWING OF THE ARTERIES FROM THE NECK. HE RECOMMENDED SEEING A NEUROLOGIST CLOSER TO MY HOME (THE HOSPITAL WAS IN MANCHESTER AND I LIVE IN LONDON.) AS YOU CAN ALL IMAGINE THE JOURNEY HOME IN THE CAR WAS A NIGHTMARE. SINCE THEN ALTHOUGH THE SPINNING HAS IMPROVED I STILL GET VERY DIZZY IF I MOVE MY HEAD AND GOING OUTSIDE IS VERY DIFFICULT - IN FACT I HAVE BOUGHT MYSELF A WALKING STICK!! I CAN'T DRIVE THE CAR ANYMORE AND FEEL VERY ISOLATED. THANKS TO THE MIRACLE OF PRIVATE MEDEICINE I SAW A NEUROLOGIST 3 WEEKS AGO. HE ADVISED SEEING AN AUDIOLOGIST (HE ALSO TOLD ME I WAS SUFFERING FROM LAB)WHICH I SAW THAT SAME WEEK. I HAD ALL KINDS OF TESTS INCLUDING THE TEST WITH THE BIG GOGGLES WHICH PROVED I HAVE NYSTAGMUS IN BOTH EYES!! I ALSO HAVE PROBLEMS WITH MY LEFT EAR WHICH THE AUDIOLOGIST WANTS TO SORT OUT. HOWEVER SHE IS GOING ON HOLIDAY UNTIL 16TH JULY SO I AM AT A COMPLETE STANDSTILL. SHEALSO WANTS TO SEE THE ACTUAL SCAN FROM THE HOSPITAL AND CONSULT WITH THE NEUROLOGIST. i AM A TEACHER AND CANNOT GET BACK IN THE CLASSROOM AS WHEN I MOVE MY HEAD I CANNOT REGISTER WHAT IS GOING ON PROPERLY AROUND ME. AS FOR FETCHING THE KIDS IN FROM THE PLAYGROUND - THE WAY I WALK (CONSTANTLY VEERING OFF TO THE RIGHT!) I LOOK LIKE A DRUNK. I AM GETTING VERY DEPRESSED AND WONDER WHEN I WILL BE ABLE TO GET BACK TO WORK. SORRY TO BLATHER IN SO MCUH - BUT I FEEL YOU'LL ALL UNDERSTAND. CHEERS DENISE

About 2 months ago, I was diagnosed with acute serous otitis (ear infection) and labyrinthitis. I was given antibiotics for the infection and meclizine for the dizziness. After about a week, I was back to normal. Last week I began to hear ringing in my ears. A few days later I noticed the dizziness. I went back to the urgent care clinic and was given more meclizine (which may or may not help, I'm still not sure).

Like a lot of people here, I also had nausea and anxiety and depression. I rarely get sick and have never had anything quite like this so I freaked. I missed a lot of work last week because I couldn't concentrate and was afraid to drive (I have a 30 minute commute). Today has been better than the last few days, so I'm hoping to be well enough to go back on Monday.

Yesterday I got a referral to an ENT and I plan on making an appointment Monday.

I've noticed that getting plenty of sleep (at least 8-10 hours) helps a lot. I've also been taking a multivitamin, vitamin C, and bioflavinoid complex.

For those who have taken or are taking Meclizine, have you noticed any tingling in your fingers/toes? I've noticed that after I take it, I get that feeling. It goes away when the Meclizine wears off.

This site has been a great source of information since I got my symptoms. I've been checking it every day this week. It gives me peace of mind to know that so many other people have gotten through this.

Does anybody else get dizzy EVERY time they move their head? How do you find it in a car as a passenger (never mind while driving - I would just crash the car!)? Big spaces and lots of people are very dizzying - any ideas of how to cope? Would love to hear. Cheers Denise

Hi, everybody, I was not on this site for a while - I have not been feeling very well - actually I was on a sick leave (out of work) because of a lot of fatigue and increased dizzy symptoms and unsteadiness. This illness is taking all my strength,I am still feeling week(19 months of labs/BPPV/Perilymph fistula). Denise - you asked - "Does anybody else get dizzy EVERY time they move their head? How do you find it in a car as a passenger (never mind while driving - I would just crash the car!)? Big spaces and lots of people are very dizzying - any ideas of how to cope?" Yes, yes and yes to all your questions.

How to cope - PATIENCE and TIME - take it easy - rest as much as you can - start to untoduce new activities very gradually. Be ready for UPS and DOWNS. Tell everybody who cares about your condition and your sympytoms - tell them about your limitations. YOU NEED SUPPORT FROM YOUR LOVED ONES AND FRIENDS!!! YOU ARE NOT ALONE!!! Hugs, Anna

How is everyone doing?

What are your symptoms on a daily basis?

And how much can u do in a day?

Shops? Cinema? Walks? Restaurants? Taking naps?

How many of you are at work/ and otherwise taking time off work for labs?

This site hasnt been working for a while but all up and running again thanks to rich!

Deee

Hi Everyone,

Its been a while since visiting the site, been trying to get myself out more and get life back together after being hit with the labs 7 months ago. I'm happy to say that things have calmed do a little for me and I seem to be on the road to recovery :) I did however have a question that someone may be able to help me with. Back in Decemeber when this had all started after a bad case of bronchitis, when I had blood work done everything came back okay, BUT my white blood cell count was elavated at 18,000. The doctor wasn't really concerned, but now 2 weeks ago she did another set for blood work and again my white blood cell count is high. it has gone down to 15,400, but still considered high. Now she is sending me to a blood specialist :( My question is this...has anyone else ran into this type of problem with the labs??? If you can remember my anxiety was sky high, I was have a difficult problem with eating due to the anxiety, wondering if this could play a part too?? ANY input would be sooooo greatly appreciated.

Laurie

5 1/2 months of labs...doing pretty well been about 85 percent now for like 2 months.....eyesite just being alittle spacey is the only thing wrong it wont get back to normal.....does anyone think that i will be there soon

Hi, everyone,

Just to answer Dee’s question. How much is too much for your body and mind with this illness? My bad example – I have been working with my labs/BPPV/PLF 8 hours a day starting from August 2004 after bad relapse of my illness and being out of work from March 2004 to August 2004. THAT WAS TOO MUCH for me. I pushed myself way too hard because I was not feeling well at all. I ended up on a sick leave being completely exhausted. Several times I almost collapsed at work because my legs and head started trebling and I could barely walk to my car and get myself home (5 minutes driving). I was very depressed and scared, that my dizziness will return more severely. It did not hapenned fortunately. It was just (!!!!) physical and moral exhaustion because I took too much load on myself. My doctor suggested “to rest more and to take a break as long as I need” and he wrote down on my sick leave “permanent disability”. I was sitting and crying at home. I am ABSOLUTELY sure, that my disability is not “permanent” and that I will get better with time, but for now the doctor is right: I NEED A BREAK. So, listen to your body – do not work too hard if you are not 100% back, or you do not see PROGRESS in your recovery!!!

Chad – spacey feeling and double vision in my eyes was the last symptom, that I had in my previous recovery (I was symptom free after that for many-many years). I wish you further progress!!!

Laurie – the first time I had labs (pure labs at that time) after an attack of hepatitis A virus, I had very high white blood cell count, which, I think was a sign of infection and the fact, that immune system is strongly fighting the virus. Somehow I do not believe, that anxiety can cause high whit blood cell count. Somehow I am pretty sure, that you do not have any blood disease, and this is a sighn of your body still fighting against inflammation caused by virus.

Everybody, keep hope.

Anna

Diagnosed first with MS in US when I went to ER with serious problems then a week later UK Drs said it was viral labyrinthitus and gave me pills which don't do much at all.

I still feel this could be something else since I have other neurological symptoms that nowone else has mentioned here in comments.

My symptoms started with tingling all over body including my head and face and strange rushes to the head and feeling like i'd pass out, the wierd head feelings were worse when sleeping. I woke up one day later with my right side of my head numb and felt very swollen, it also caused some slight paralisis to my facial nerve. The pressure was so great that I rushed to ER. I was tested for heart, clots, lungs, kidneys and eventually a CT scan which showed no sign of stroke. Since then I still cannot sleep because the pressure and swelling to the head seems to occur when asleep, whether I sit upright or lie down in bed. Even the herbal tranquilizers do not help stop this feeling. My other stymptoms have been deep musclular aches especially in left arm and deadness in arms, legs, hands and feelings of swelling at base of skull and forhead on right side. Trouble thinking, walking, limbs not working right, eye focus really bad, confusion, severe disabling dizziness.

None of the Drs are taking this seriously and don't realise how hard it is to function.

If anyone has had similar symptoms like mine please let me know.

Hi I am so glad I found this site! I first got VL 4 yrs ago which lasted about 6mths. last year I had another bout which lasted about 4mths and I have it again. This time it is not as severe, but it is lingering on for about 2mths now. This time my balance is affected. I didn't get the dizzy spells only the nausea, stuffy head, headaches and tiredness, along with balance problems. My left ear is always the problem. It feels stuffy, aches and I can't stand being outside when the wind is blowing! I also have a problem with some noises now and crowds! I have been to ear, nose and throat specialists and had a CT scan yesterday. All came back normal. I was even hoping I did have something on the CT scan to put me out of my misery or at least they could fix!!! I am 36yrs and started Uni this year and find that this condition is quite interferring with life. I'm not sure which country this site is in, but I am in Australia near Brisbane. Does anyone have any suggestions on prevention? I find my VL comes in winter. My doctors too say it will clear up on its own! I'm glad there are others out there who know what I am going through. Thanks Angie

Diagnosed first with MS in US when I went to ER with serious problems then a week later UK Drs said it was viral labyrinthitus and gave me pills which don't do much at all.

I still feel this could be something else since I have other neurological symptoms that nowone else has mentioned here in comments.

My symptoms started with tingling all over body including my head and face and strange rushes to the head and feeling like i'd pass out, the wierd head feelings were worse when sleeping. I woke up one day later with my right side of my head numb and felt very swollen, it also caused some slight paralisis to my facial nerve. The pressure was so great that I rushed to ER. I was tested for heart, clots, lungs, kidneys and eventually a CT scan which showed no sign of stroke. Since then I still cannot sleep because the pressure and swelling to the head seems to occur when asleep, whether I sit upright or lie down in bed. Even the herbal tranquilizers do not help stop this feeling. My other stymptoms have been deep musclular aches especially in left arm and deadness in arms, legs, hands and feelings of swelling at base of skull and forhead on right side. Trouble thinking, walking, limbs not working right, eye focus really bad, confusion, severe disabling dizziness.

None of the Drs are taking this seriously and don't realise how hard it is to function.

If anyone has had similar symptoms like mine please let me know.

Hi Angie,

My name is George and i am from Melbourne. (my first entry was on 21/4/2005 on page 3).

I first experienced this terrible disease on 4 Nov 2004. I am better now but still have the balance problems i.e ground feels like it is bouncing when i walk. Only thing i can suggest is keep doing the VRT balance exercices (i am assuming you are doing these, and be as active as you can.i.e walk, run, walk down the aisle of supermarket to retrain your brain e.t.c)

I too have a problem with my left ear. It sometimes feels full, wet, aches, sometimes . When i did all my tests, substantial sinusitis showed up on my MRI. I am now seeing an allergist as i am allergic to dust mite and doing the desensitisation shots. As you menion stuffy head e.t.c have your sinuses been evaluated? My ENT told me that sinusitis can exacerbate vestibular diseases of any kind. When you say problems with crowds what do you mean?

George

Hi Everyone!

This site hasn't worked for some time for me. I haven't been able to post.

My ideas for prevention include plenty of sleep and in winter, getting a flu shot. It's done wonders for me, no colds or flu this winter, and my I feel heaps better.

As for my progress - coming up to the 3 month mark, (which is SUPPOSED to be how long residual symptoms last for) I can see improvements every few weeks. I believe I am on the road to full recovery now.

Chad - Hang in there mate. Dr's say it can last up to a year. Have you tried some compensation exercises and or exercising?

Once again - Is anyone here from Sydney? If so, maybe we could meet. I would find it easier to talk to someone directly!

Hi, everybody

Jilaen – from your post it looks like you had an air trip from USA to UK already having VL. My experience - the same “neurological” symptoms of awful pressure and numbness and tingling, swollen sensation, lip twitching, only on the left side of my face and head, and body I experienced in 1995 and in 2004 both times very soon after airplane flights. And both times I was flighing already having all symptoms of VL!!! I gave a lot of thoughts and research to all my experiences of dealing with VL (five major bouts in 33 years of my life, I am 53 now), looked through a lot of medical literature and talked by Internet to a lot of people having inner ear disorders. I can suggest you a theory of what happened to you and to me on top of VL after changing PRESSURE in your already inflamed inner ears during airplane trips. These horrifying neurological symptoms are due to PLF – perilymph fistula – actually a tear (a hole) in a thin membrane, that normally separates the fluid filled inner ear from the air filled middle ear. Of course, not all people with VL have PLF! (this is for other people on this website) PLF is like a crack in the bone, or break of the leg, for example. Only it happened in your head and NOTHING can be seen on MRI, CT scan or any other tests. A neurologist will tell you, that he cannot see any wrong with , he may probably suggest to make a horrible test for Multiple sclerosis (MS). Do not agree!! You do not have MS, but on the basis of the history of your specific condition, you probably have these neurological symptoms due to you inner ear disorder. If you have a PLF – what to do? You will have a lot of RECTRICTIONS on movement and activities because your head is basically broken! (sorry for you and for myself!) Imagine - you will never jump or dance on your broken leg, so do not “jump” on your broken head (do not run - you cannot do it anyway, because you are so dizzy – do not bend over, sit upright for a long time, fly on air planes, lift heavy things, this list can be prolonged – see a good website written by a famous doctor T. Hain http://www.dizziness-and-balance.com/disorders/unilat/fistula.html). By the way, he can answer your E-mail questions – he did answer my questions! Remember, that TIME with avoidance of strenuous activities HEALS PLF. ONLY after it heals (you will have no more neurological symptoms), you can very carefully and gradually add more and more activities and train your impaired balance (it is impaired both by labs and PLF on top of it). Jilaen – for those who are in the UK – visit the site http://www.labyrinthitis.org.uk/ and E-mail to Emma. Ask her about the place at the UK she is having being diagnosed and treated, It is the best place in the UK, she says. I trust her opinion very much! Everybody else on this website – visit VEDA association website on http://www.vestibular.org/. Remember - do yourself as much research as possible on your unique condition (by the way, everybody’s condition is UNIQUE and DIFFERENT – BE YOUR OWN ADVOCATE! Be persistent and insistent with doctors – discuss all the questions very carefully (right them down before you visit a doctor). Say good buy to those who you do not trust – in this believe you instincts. Definitely, say good buy to those who say “it is all in your mind”, “go to a phychiatrist”, or “your are exaggerating” etc.

Whatever inner ear condition you have – your are in a lot of physical pain, sometimes it is excruciating (my headaches were absolutely terrifying and devastating, much-much better now) – take any pain medication, which do not cause side effects for you. You absolutely MUST take pain medications (it is a necessary PAIN MANAGEMENT).

AVOID FATIGUE – take a nap, or just lie down in a dark and silent room for any time you need. ONLY YOU know how bad you feel at times and how fatigued you are.

TAKE ANTIDEPRESSANTS – anxiety, depression and panics go side by side with ALL inner ears disorders, especially when they are long term. You will feel much better with antidepressants – calmer, quieter and they are a great part of pain management (according to recent studies).

I am ready for any questions, discussions and new ideas.

Hugs, Anna

Hello everyone!

I'm hoping to find Benign Positional Vertigo sufferers in the south-east of England who can recommend specialists and talk about their treatment. My problem is I believe my partner has BPV, but he is refusing to see his GP about it (he's scared).

Desperately hoping someone can help as he won't do anything about it until he knows more.

Thanks!

Libby

Cop,

Do / did you have the "marshmellow feet" at any stage. i.e the ground feels like it is subtely swaying when you walk? If yes, how long did it last?

George

Hi i have had labs for 16 months and I find this page excellent.I am from Sydney. Did the rounds of the doctors and a neurologist gave me stematil - didn't do a thing. Now I am on rivotril and endep of a night. The first 5 months were the hardest with lots of anxiety. Only after reading this page did I feel able to cope and that I am not alone. I am not as bad as some of you but this is very debilitaing and you never know when you are going to have a good day or an off day. Would be interested to talk to anyone from Sydney as we seem to have no associations to help us.

Libby, if you send me your email address I can give you the number of an ENT Specialist in Bucks, who I believe is vey good.

Can anyone help with a couple of questions I have at the end of my note ?

First let me tell you that I have also been diagnosed with Viral Labyrinthitus. It started in Oct 15th 2004 when I felt as if I was "free falling" from an aircraft down to earth. My surroundings were spinning around in a violent manner. I was prescribed Betahistine Hydrochloride 16mg 3 times a day. It helped but did not cure it. My first time lasted 2 months.

Then on 19th June 2005 it started again and I have it now. Took the same drugs as above and now I am feeling Dizzy, Fuzzy Vision, Brain Fog, Eyes Twitching, Lack of Balance and Panick Attacks. I feel sometimes I am going mad and it's all in my head.

Can anyone suggest practical help on overcoming these feelings ?

Someone mentioned on above notes about "compensation exercises", what are these ?

Thanks Toze

Hi George,

Marshmellow feet is something I never quite got. I suppose I did, but to me it just felt like I was walking along the top of a ship in rough waters. I still get it now when I'm tired.. particularly when walking home from a 12hr shift! What stage you at mate?

Louise... I'm from Sydney. We should get together and have a chat about it. It would make me feel better!

It's a shame Anna is not in Aus - you're amazing Anna! Have helped me beyond measure.

Hi Cop I live at Cherrybrook - Hills district Yes it would be good to talk to someone that understands completely. Sometimes you really do think you are going nuts but you have to get on with everyday life. The thing is I have good days then bam your off again not bed riden but fuzzie and the supermarket and shopping centres seem to be the worst places. I go to these places often trying to get my head to re adjust or whatever it is suppose to be doing. It seem to be taking an awful long time to get back to normal- I think now that there is no normal and that I just have to live each day as it comes

Hi to all those who have recently posted...

Libby - I can recommend you a Neurotologist in London (1 of the v few in the UK) if you email me at my website as suggested by Anna.

I have marshmallow feet - v common with vestibular disorders but a truly vile feeling.

Toze etc - check out my site as listed for compensation or VRT exercises. The drug you mention should really be avoided as masks the symptoms and does not aid recovery.

Wishing everyone a nice weekend.

xxx

That's near castle hill right? I live near the airport. Maybe next time you're near central we could have coffee or some other non dizzy-spell inducing beverage.

I find the supermarkets the hardest too! Probably because I'm always shopping the day after nightshift and I feel very fatigued also. But yeah, they are painful. How long have you had labs for?

Hi, everybody

gearge - I also have "marshmellow feet" very often noe. I think, that I am improving though

Hi, everybody.

George and everybody – I have marshmallow feet for may be about a couple of month - Because they are “marshmallow” they start trembling when I get tired or stressed with something. So, I try to AVOID fatigue and not get my self to the point of trembling legs. I still consider it an improvement from the state, which I have been in for many-many months before, when the ground was rocking below my feet and my vision was blurred, and surrounding were shifting in a weird way. Thanks God – no more rocking and shifting sensations and no swaying of the body. Now I can even stand still without support for a couple of minutes like a normal person! But if I try so stay still longer, or talk to somebody while standing, my feet start trembling and I have to sit down or better lie down immediately. I am much better with computer screen now which I consider a good thing. I still have trouble with noises – they make me tired, my head hurts and finally I am about to faint. I try never get myself to this “about to faint” point, I protect my ears with Bose noise canceling earphones. At least some time I WILL NOT push myself to go to noisy and busy places like supermarkets and restaurants – I cannot handle them for this time. It does not mean, that I gave up – no way! I will try this type of activities in a month or a couple of months. Very often my own voice causes buzzing in my head, and if I ignore this warning sign and continue to talk, I end up with being dizzy or “about to faint”. Again, I try not to get myself to this bad point. I hope that this condition will also improve gradually with time.

Cop - I am happy for you, but 12 hours shift is a really long time and should be still very tough on your balance system and the whole body. Be careful – have a good long rest on weekends. I am not in Australia, I am in Oklahoma – it would be nice to chat with you Louise in person, although frankly speaking I can listen and talk myself only for a very short time. It is such a great thing – computers and Internet! What would we do without them?

Toze – You ask for practical help on how to “overcome” all the scary feeling caused by this disease. This disease is a sad reality of our lives (unfortunately!). We are not crazy and it is not something, that we imagine, or even exaggerate. But we HAVE live with it for some time - unfortunately, nobody can predict for how long your recovery will take place (everybody recovers at his or her own pace . But the great truth is, that VERY SLOWLY with “ups” and “downs” but IT DOES GET BETTER. Educate yourself on your disease and especially on coping techniques. Personally, I can suggest you a good newest book Consumer Handbook on Dizziness and Vertigo. It covers many aspects of the problem and gives much more scientific: physical and phychological understanding for this poorly understood condition. You can purchase it on Amazon.com. It’s worth it.

Emma – I am so glad, that you are back on this site! I really respect your knowledge, personal experience and always good practical advice.

Hugs to everybody,

Anna

Anna, you should become a counsellor! Great help for everyone!

I am happy to report that after 3 months I am seeing the end of this. I feel 90-95% most of the time now. I am believing that one day I will be fully recovered. It was impossible to think this at the beginning, but now I am so much better!

I don't get marshmellow feet walking home after work anymore. I can even bend down to tie my laces without falling over! I still feel a bit crook and dizzy at times, but I am almost there.

The mantra is true. Recovery is slow but sure.

Thanks Anna - bless you - yeh, have had a bad time lately with symptoms and a low mood with having this thing for so long - hence why I havent been around. You are always welcome to email. xxx

Hi George, hi everyone, I am feeling abit better now. I am still abit confused though. I have been doing alot of my own research as I can't seem to find anyone locally who specialises in vestibular disorders, or who can diagnose me. I have been told I have had Viral Labyrinthitis twice now! If you have VL, do the symptoms go or are they constant? My symptoms hang around for 2 to 6 mths, then go and I am ok for around 8 mths until another bout comes. In the last month or two I have noticed that my left ear pops, gurgles, aches, feels wet, has sharp pain and I generally just want to rip my ear off the side of my head!! My balance is affected aswell. I am going through the 'ear thing' at the moment. Some people i have been in contact with say i mightt have a dormant virus in my nerve or it could be meniere's. I don't have loss of hearing though only a feeling of dullness while the other symptoms are present. Can someone clarify a few things for me please? I hope you are feeling better to George. I haven't had my sinuses tested but have had a couple of sinus probs in past. Last time was 2003, and that is the only year I haven't had VL symptoms? Go figure!! Cheers Angie

Hi, I just wanted to chime in. My name is Sam and I have had labs for about 8 Weeks. Actually, 8 Weeks today. This is my third bout with it in the last 4 years... And I must say its terrible.

I have the

spacey Head Feeling Sometimes headache/neck stiffness Heavy Head Throbbing Type dizziness where I feel a pulsating feeling on teh side of my head.

I feel dizzy when I lie down, also, sitting still sometimes makes me feel bad. I might be a bit better than when this started but I cannot say... Its hard to remember and judge by the previous week/month. I try to journalize my symptoms everyday, but even that gets hard to decipher.

Anyway, I have been feeling quite depressed lately at all this.. I was just looking for some support, because this is wreaking havoc on me emotinally as well as physically.

At this point I am having a hard time distinguishing between good and bad days.. to me they all feel like bad days.

Oh also I feel my worst in the morning... Kinda ok when I wake up, but by the time I get to work till around 2PM I dont feel so hot... feel pretty gross, but then by evening it seems to die down.....

Sam

Hi, dizzyfighters,

Sam – you are always welcomed on this website for any support or practical questions. The idea of keeping a journal of your symptoms is still excellent. Whatever are your symptoms or mood during a day – try to force yourself in the evening to make a short note. Believe me, that you WILL SEE the difference to the better feeling at some point. It is hard to believe in it right now, but it will happen. By the way in the beginning of my bouts I always had the same pattern as you describe – feeling the worst in the middle of the day.

As my recover continued and my dizziness subsided, I felt more and more better in the mornings, but got really tired, sleepy, with marshmallow, or even trembling legs to the end of the day. Don’t you think, that our body tells us: “I NEED REST!!!”?? Angie – right now I am also going through “ the ear thing”. Left side also. I suspect PLF in it. Clicking noises , zoomming and sometimes sharp pain in it. Stuffy nose sometimes. My recent CT scan was absolutely normal. Tingling sensation on the left cheek, and funny metallic-sour taste of the left side of my tongue (which means, that the nerve in the left middle ear, under the oval window, is involved). My idea – if you have this funny taste – it can be a signal, that you have a PLF of that side and you should be VERY CAREFUL with your head, and behave as you have a “broken head”, or head trauma. Ask yourself – do I feel better after keeping your head as still as possible? Do you feel better in the morning after a good night sleep? Just my idea after watching my own symptoms.

Emma, honey – just do not know what to tell you. I also feel down sometimes with my symptoms and very angry with the whole world. Emma and everybody –just to keep your spirits a little up. New research and new approaches for treatment of inner ear disorders are coming. Have a look at the website http://www.earinfosite.org/advances.htm. There is not a lot of understanding YET. Several decades, decade, or even several years ago people with a lot of diseases were not curable (you can name them yourself), but now days there are successfully cured or at least taken under control. I hope it will happen with inner ear disorders soon. Many of your are still very young or just young. Of course, it is sad, that it happened to you so early in your life. When my problem started at 20 years old, medical science did not have a clue even of the location of the damaged organ in my body !!! At least they do now!!! Maybe we will soon have more help!

Let’s support each other meanwhile.

Hugs, Anna (July 19, 2005)

Hi All - first of all, I feel silly for even asking this when you are all coping with much much worse situations than me.

I got diagnosed with labs last september as a direct result of being stressed out, exhausted and deeply unhappy with my work situation. My doctor refused to let me go back to work until I insisted and was incredibly supportive. no meds, just rest and introspection.

So I decided to make a positive change and got myself a new job which is hard work but exciting and rewarding. Got myself back on track, exercise 2-3 times a week, eat well, slepp well, work from home 2 days a week even. So what happened?

I just had a long weekend off and went home to mum and waking up after a few days felt dizzy again and oh so burpy! (how embarrassing is that!) it then went during the day but now three days later I am feeling off again and had to stay home from work today as I was 'listing' heavily to the right in the shower and thought an hour and a half in the car might be a rather bad idea.

I am busy yes but dont feel stressed, depressed or run down at all so I am annoyed to feel like this and dont know what action to take next. I am concerned that my doc will try to sign me off and I really dont want to be off at the moment as I have some exciting and highly motivating projects on (I work in marketing).

Also, I feel fitter physically than I have done for ages and was on a break resting so why oh why did my head go all wonky?

Hi Sam

Just to let you know that I too feel fine when I get up, then late morning the dizziness comes and last for a few hours, then like you, by evening I usually feel good. I have had this since November last year, though I coped with it well until April when I caught a virus and the Labs came back. I haven't worked since April and would love to get back but my confidence has taken a huge knock and though I wouldn't say I'm suffering as much from the anxiety as I was a few months ago I am still scared to venture out for too long on my own. I am fine in the supermarket now but I always have someone with me. I can stay in there for an hour and not feel too stressed, however, working for eight hours I don't think I could manage that just yet. I had my family around on Monday and they stayed for 5 hours and I was so proud of myself because I managed to cope. A few months ago I couldn't talk to anyone for more than 5 minutes, I was such a wreck! I am so much better than I was then, though it makes me angry because it just won't go away completely. The amount of time one has to wait for treatment is so frustrating too. Why can't we get the exercises when we visit ENT the first time. I have been twice and still have nothing. Surely the exercises are similar for most people with Labs?

Yesterday, my 8 year old daughter had her summer school end of term concert, and she desperately needed me there! I was absolutely dreading it, sitting in that hot stuffy hall with about 200 mums and dads and 300 kids. All that singing, and loud music. I had a few wobbly moments but I managed it and it lasted one and a half hours! So yes, as everyone says, it does get better, but slowly. Can't wait for the day I am back to my normal self! Like my hubby keeps saying "Sandie, you have to take one day at a time and accept that it is going to take a long time, at least it is not life threatening". And, when you think, you know, so many people are worse off than you, just gotta keep your chin up!

Take care everyone xx SANDIE

hey cop is your eyesite better now....this sucks im feeling good its just my eyesite still wont go away its still out of focus alittle like spacey feeling still...its been 5 1/2 months why wont the eyesite just be perfect...i think this may last forever...

What ever happened to Chad... And wher eis everyone?

Thanks anna for your support. I too pray for more research into vestibular disorders - and soon...

xxx

Sandie, How good is it when you have those moments when you realise you are getting better? Awesome hey! It's great to do something you did before but it feels better this time... shows you are making improvements.

Chad - My eyesight is ok. It was terrible, but I've just been forcing myself to do everything and it's kinda improved. Can you describe yours more?

The other day I was feeling so good I went out and had drinks with some mates. The week after I felt so bad! Alcohol really knocks me around now! Although I feel better when I'm on it, afterwards is hell for a week or so. Just FYI...

Anna - that website you recommended is really good, everyone should visit. Thanks for that, you are a godsend xx

SANDIE

Hey everyone,

Just a quick question. I don't know if anyone can answer this because it seems like the labs is still going on for alot of you :( I think the labs is pretty much gone for me, but I do still have anxiety and a little depression to which I didn't have normally. does that seem to hang around for a while after the labs has passed???

Also just a little information that may help.. I have been seeing a specialist for blood disorders because my white blood cell was high from the start of the labs. he told me you can TOTALLY track your progress of the labs virus through watching the white blood cell count. The virus does effect your white blood cell. for example, me white blood cell in the beginning of labs was 19,000 which is high That was back in December, in march it was down a little to 17,400. In May it was down more to 15,400 and as of last week it was down to 14,300. all the while I was feeling a little bit better as for the labs. I'm almost in the normal range and would say I feel almost 100% But the anxiety and depression seems to be hanging around. Just some food for thought and a question....hange in there everyone :)

Laurie

Hi Cop, Yes it sure is a good feeling, when you can actually do something you haven't been able to do for ages. My next hurdle is getting back to work!

Went for a walk yesterday, all by myself for over an hour and I felt so good! Saw a man riding a bike in all the busy traffic and he only had one arm. I was so amazed that he could do this, I couldn't even do that fully fit! It made me realise that life goes on, if he can do that I sure can walk around feeling dizzy! I'm starting to accept now that this is the way I am and I just have to get on with it.

I feel quite dizzy the further I get away from home, (that's my safe zone), but hey what's the worst that's gonna happen. I'm gonna fall over dizzy? Maybe it's not so bad!

Take care x

SANDIE

HI All,

I wanted to ask another question about this stuff. I am basically going into th end of my 8th week with this junk, and I dont know if I am making any improvements yet. I feel terrible everyday.

Chad, Cop, or anyone, did you feel a throbbing or pulsing in your head when you were going through this? It feels like I can basically feel or hear my heartbeat at times. if i put my finger on the side of my head I can feel my vein throbbing and basically take my pulse.... Anyone else?

Sam

HI Laurie....

Yesy sometimes the depression can linger on for a bit ... Basically I think its the feeling of "is it really over?" which makes you kinda do everything cautiously forfear that it may return... I thikn thats normal... Eventually you will realize you are OK and your anxiety will go away.

I've had this thing before.... Just never quite the same way as it is now.

Sam

Hi Sam,

I didn't get those symptoms. But everyone's body takes it differently. 8 weeks is good progress. I'm in my 15th week now.

Laurie, that's really interesting about the white cell count. But I thought the virus only lasted a little while, and this damages the vestibular system. Then, it was just the vestibular damage that casused the symptoms for months. What do you reckon?

I'm getting some blood test results tomorrow and I'll check em. I'll let you know how I go! I had them done to see if I was suffering from anything else, because I am still feeling a bit spacey and weird. It's funny - I was trying to describe the symptoms to the Doc and she found it realy hard to understand the 'head fog' symptom. Anyway, I'll wait for these results.

No need to feel depressed anymore if you're symptoms are gone mate! However you should know that depression is largely due to brain chemicals. The balance is disturbed when you get stressed and start thinking negatively etc. Once the stress and sickness have gone though, it will naturally take the brain time to restore the balance. Just exercise, be with friends you enjoy and do things you like doing. You'll start feeling better in no time.

hey guys -

Just want to say hi to everyone again and wish you guys all the strength, courage and hope to get through this.

Its an emotional & physical challenge and i hope we all have more good days more often!

deee

Thanks Cop -- I am still waiting to start to see better days... At what point did you start seeing better days and was it just all of a sudden or did your symptoms just get better gradually until you realized that its not that bad anymore?

I am trying to understand how this process works.. I am not sure if I feel better on some days, I just feel strange evryday

Sam I know exactly how you feel. Around the 8 week mark I started to see big improvements. Now in my 15th week I'm better still, but I still feel strange! The big difference between how I feel now and how I felt for the first 8 weeks is the feelings I got of moving up/down/sideways. I would get them all of a sudden when I moved my head. Now I get them only very rarely, say once or twice a week, and only when I'm tired.

I imagine the rest of the process will be gradual. I don't accept that the spacey way I feel now is normal. I will feel better from here - I know I'm not fully recovered yet.

I'm off to see the doc now...

COP your like me....its been almost 6 months im doing everything i usually do except my head feeling alittle spacey is all i feel..and i get alittle tired sometimes but other than that if my eyesite got back to normal i would be 100 percent...but for somereason this eyesite is the only problem and its been like this for like 2 months...sometimes i think it may be like this forever...but i know it wont at least i hope

Cop- my eyesite is like out of focus like its a spacey feeling, i can see everything, it is just alittle weird. 24 hours a day. (THATS really the only way i can describe it) when i drink alcohol is really the only time im tired the next day. but i tried going weeks without drinking it doesnt make a difference if u drink or not it doesnt prolong it)

Sam- ive had it once for 1 week, another time for 2 weeks and now for almost 6 months...i had headaches sore body arms legs, pains in my head, heard my heart beating whenever i did any kind of excerise, and red eyes blurry vision sometimes, and my eyesite i just felt weird just like my eyesite was alittle out of focus..(never had the true spins though where the whole room spun, the specialist said my right ear in damaged...it does go away and my eyesite will be normal it may take a long time though)

one more symptom.........i also get alot of trembling like at night in bed when im tired i can feel my legs shaking inside and my chest etc......thats cause your so fatigued my doctor said....

Hi Sam,

Sam i found in my experience that the the improvement is not gradual like any other illness. Its a bit of a rollercoaster ride.Some days are good some bad, but i have found that the bad get less and less in severity.

I am still not 100%, but around 90%. My vision is a bit off and i still have the marshmellow feet.(however over the past few days i have notices the marshmellow feet might be getting better)

In my experience (i have said this before), i have found this disease has caused stress/anxiety. Sometimes when i had headaches/dis-equilibriam i have noticed that i am breathing quite shallow and therefore hyperventilating which can cause dizziness. It's definitely not every time, but sometimes my dizzinesss may not be related to Labs at all but the stress of it all.

I first was struck down with this in Nov04, and it is only now that i can see myself getting slowly better.

On the subject of pulsating headache, yes i did get that too. My case is different as i have really bad sinusitis and i think that's why the pulsating head.

What has helped me is :-

1. The balance exercises

2. Forcing myself to walk everyday, even though i feel dizzy. (around shopping centres, aroung the neighbourhood and the supoermarket).

3. If possible you must get out of the house otherwise you may develop a fear of getting out of your comfort zone.

Keep well all

George

I got the labs last July 2004 and it took a good 6 months to feel better and 9 months to really feel good. The depression from long-time illness was dibilitating. I too went to all the doctors, ENT, Neuroligist, (sp?) and my personal dr. I had a MRI, CAT, tons of blood work, prescibed valium, ( which helped with the dizzies). But, as I was told by everyone, the virus can't be cured, it has to take it's course. Lot's of sleep, lot's of water and vitamins seemed to help because I felt proactive. The more I did, the better I felt. The summer is back with its humidity, barometer changes. I still get slight fuzzines, but nothing like before, so everyone, most of us will recover completely. This is not a life-threatning disease. Our brains are amazing and will eventually compensate. Take care, stay positive it will go away.

Hello forum administrator - why aren't my posts getting through but this spam is?

Movable Type will allow me to moderate comments but not trackbacks, so some spam will still get through in the form of fake trackbacks until I delete them. With comments, I have to either approve or delete each message. I typically delete two hundred spams a day, but sometimes I might accidentally delete a real comment as I'm only human.

Thanks Guys --

I am still waiting for that big improvement -- I have to hit the doctors now and get all the standard tests done -- MRI, Blood etc... Just to be on the safe side.

Its strange how long these symptoms take to resolve. I wish there was just a way of telling what progress everyones making. Either way, if you just wait it out and see what happens, maybe it will all disappear and that would be wonderful news.

Thanks Rich, you're doing a good job as this forum is very active!

Chad - Yeah, we sound very similar. I'm just taking care of myself. It's hard always saying no to people when everyone's going out for a few drinks, and I'm always having to get more sleep than usual.But hey I can't complain really. Life's too good! I really appreciate the good moments when I'm feeling fine now. By the way my blood test was all normal. White cell count was normal, so I'm not currently dealing with a virus.

Chad your eyesight might be like my foggy head thing. In fact, it might be just the same, but we're interpreting/explaining it differently. I'm sure they're going to get better over time. I notice mine has! Well, at least nothing is getting worse - all I notice is progress. So there's no reason for the progress not to continue as I continue to look after myself.

How dodgy does this sound? My girlfriend happened to be talking to a couple of homeopaths and they cooked up some "conium 3" for me and gave it to her with instructions. After talking to my GP and her saying there's nothing wrong with me and there's nothing she can do, I've been taking this conium stuff. I'll let you know if it works. It's 3 drops in a glass of water 4 times a day.

It's probably just magic water of the placebo variety... but I'm willing to try anything really!

Anyone else had any experience with it/knowledge of it?

Also, I wanted to raise this issue: During the first two weeks of this, when the symptoms were the worst, I had to be at my most active by necessity. I was thinking this might have worsened the damage to my vestibular system by keeping it active when it needed to be rested. What does everyone think? And did you all stay in bed or move around lots in the first stages?

-Cop

its been just about 6 months now and i have had a horrible last 3 days just tired as crap and went to work and straight to bed today i woke up feeling still really tired and my ear popping like crazy im hoping its just a set back of a few days and will get better everyonce in awhile ill get bad for a few days...but to be honest the last few weeks i have been going out and enjoying myself etc......this is a weird sickness but i def. feel myself getting better by the month...robin i have talked to alot of people and everyone seems to almost be 100 percent in the 6-9 month period????

i have a question george or robin...sometimes at night especially the last 3 days cause im tired my body trembles like my legs and arms and my head alittle like under my arms etc....its from being tired the doc. said does anyone have THEM SYMPTOMS???????

Hi everyone new to this site after being diagnosed this week. The dizzy spells and throbbing temples i can just about cope with but not being able to focus properly is just a damned nightmare i sympathise with all of you,can anybody recomend anything to help with the sight problems, Dr gave me some tabs called sturgeron but they dont seem much good. I try to go about my daily activities but i am finding it really hard i feel so tierd all the time

Cop -- I have definately seen conium somewhere -- If you read back a bit someone named JayJay tried Carbo Veg..... He also tried 2 other homeopathic remedies before that and I believe one is conium.

I've also seen it on homeopath sites for vertigo and dizziness.

CHad -- I think you'll have some setbacks, and thats how the process works... Just know that it will get better and when it gets worse its just a sign of healing.

DOES ANYONE KNOW EXACTLY HOW YOU "CAUGHT" VL ? IS IT REALLY A VIRUS, OR IS IT A CONDITION WHICH CAN RESULT FROM VARIOUS VIRAL INFECTIONS OR OTHER CAUSES? IS VL CONTAGIOUS? COULD I PASS IT ON TO MY CHILDREN OR ANYONE ELSE?

HAS ANYONE HAD SUCCESS GETTING RID OF VL USING PREDNISONE? I READ IF PREDNISONE IS STARTED VERY EARLY (WITHIN 2 WEEKS OF ONSET) THIS CAN BE SUCCESSFUL. I HAVE ONLY HAD THIS FOR 8 DAYS, BUT IT'S A NIGHTMARE!!! THANK YOU.

Does anyone know exactly how they "caught" VL ? Is it from a specific virus? Can I pass it on to my kids or anyone else?

I went to the dr. right away for ear pain (with no known cause except possibly my hayfever/allergies, or due to flying on a 2 1/2 hour flight). I was diagnosed with a middle ear infection & put on antibiotics. Over the next 3 days, I became more and more dizzy. On the 4th day, I had severe vertigo and returned to the dr. He recommended Mecylzine which helps to give me small windows of feeling less dizzy.

Hi Bev, welcome to the club... maybe you and chad should have a chat!

Chad I saw on some site a simple operation where they insert a small valve into the eardrum to stop the popping. Heard of this? If you want more info I'll try and find it again.

Hey, anyone on MSN? If not, it's the easiest program to download and would be great to have live chats with everyone instead of waiting a week for a response! Plus it would take some pressure off Rich. If you're on MSN let me know so we can have a better chat.

I'm getting a balance assessment done via St. Vincents Hospital in Darlinghurst in 2 weeks. It's expensive ($245, then subtract rebate) but they'll assess where I'm at and enter me into the balance recovery program. Hooray!

Also found a good site: http://www.tchain.com/otoneurology/disorders/unilat/vneurit.html

and

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/(Pages)/Labyrinthitis_and_vestibular_neuritis?OpenDocument

.

Both these say that 'some mild dizziness/sensitivity will persist for several years' after Vestibular Neuritis/Neuronitis, which is what I think I have now, upgraded from a bad case of uncompensated labyrinthitis.

It explains it well. It DOES CONFIRM that the condition heals and the body (vestibular nerve) DOES recover from the damage caused by the viral infection.

I'm going to check out the support and info offered by this balance rehab centre. I'll let you know how it goes.

How many of you are still at home & not back at work yet??

and how far in this (weeks/months) did you go back to work?

Dee

i have been suffering from something for 3 months now not sure if it is labs or not, i dont really get the room spinning sensation i just feel dizzy and off balance with mild nausea and loss of appetite, the symptoms usually get better towards the evening when i feel a lot more calm, the weather seems too affect me also, when its low cloud i get a kind of brain fog like i have been drugged or something, sleeping is a problem also, when i shut my eyes i feel like a am falling backwards, does anyone think this is labs or not?

dave -- your symptoms do sound like labs..... Alot of people on the boards dont have the vertigo sensation but just a 24/7 dizziness. Mine does get milder in the evening as well and I know on healthboards others have said that their symptoms do get less severe at night -- This is not the same for everyone. Have your symptoms gotten any better from lets say 1.5 months ago or are you still having the exact same symptoms.

Cop -- I have MSN, but I dont use it at all... I do have Aol Instant messenger though which i use all the time. Either way, whats your username on MSN?

I haven't been diagnosed yet. About 2w ago I went on two boat trips - only 20 minutes each. They were on a small ferry near the entrance of a river so for maybe 10 minutes of each trip the boat was rocking noticeably. I didn't feel any bad effects at all, but later that day told a family member that I felt like I was still on the boat.

Each day since then, I have had at least one bout of feeling like I am on a boat. The "attacks" are getting longer and more frequent, and now much of the time I feel at best spaced in the head or slightly disoriented, at worst like I am about to pass out.

I am seeing my family doctor on Monday, but phoned him Friday as I was getting quite worried and wondering if I should be driving. I am also sole carer for a toddler as my husband is a quadriplegic and I am also part time carer for him - I haven't found looking after my family members too hard so far.

The doctor said I have probably got VL or BPPV or Meniere's. I already knew about Meniere's because my father in law has it. I have been getting tinnitus on and off for some years now, but it's no worse with the balance problems and I haven't noticed differences in my hearing.

The doctor prescribed Stemetil to take over the weekend but it has only worked for about 1/2h after taking each tablet. I haven't had any nausea but the doctor said it might help with the balance problems.

I guess I will have to wait and see from here on.

Steph - sounds to me like MDD - Mal de debarquement. Doesnt sound like Menieres to me.

Cop - interesting theory about the being active in the early days. Theoretically it is a good thing as helps the brain to compensate but my VRT lady did say there is a theory that if you dont rest to begin with and give your body a chance, things can take longer. I did the latter.

Kathy - VN is caused by many viruses, most commonly the cold virus. Yes it can be passed on in the first week or so. But unlikely.

xxx

Hi Everyone,

I am pleased to say that after 9 months of having labs, I seem to be on the mend!!! :) I can honestly say I have no idea what I would have done without all of you and this board. I have shed many tears and emotions with all of you, I Can't thank ALL of you enough for your care and support!! Anna and Em a special Thanks to the both of you...I so hope you realize what a positive force the 2 of you are to this board...From the bottom of my heart...THANKYOU!!!! Rich, Believe me when I say your putting this board together for everyone suffering has been a true Life saver, again from the bottom of my heart can't Thankyou enough!! I do still have some bad days, but they are getting less and less as time goes on and there seems to be more Good then Bad. There is one last issue with this labs that I seem to be dealing with and I was wondering if anyone has felt this same? I seem to have a big problem with heights, I get a dizzy feeling just thinking of a tall building. My son went to a show last night and it was with dirt bikes doing stunts from 5 stories high, I wasn't even there, but just hearing about it made me feel dizzy and funny. Anyone else having an issue like this??? Wondering if I'm now just dealing with the physcological ( sorry spelling) after affects of labs?? any input would be greatly appreciated.

Thanks everyone, Laurie

Does anyone here get the pressure in the head? I get this tightness in the sides of my head... sometimes in my forehead... Not in the ears though

Sam

Sam - yes the pressure in my head comes with my dizziness...

Laurie - so v chuffed that you are almost there :-)

xxx

Hi all,

Laurie, it sounds psychological since you are not physically exposed to the situations, yet you are still feeling the corresponding symptoms. You'll get through it over time! Just don't be scared when it happens or it'll take control. Just realise that it can't hurt you and it is only psychological, and that it will go with time.

Anyone else had salmonella poisoning? Because that's what I've got and IT'S NOT PLEASANT!! My flat mate and I both have it after downing some dodgy chicken kebabs the other day. Needless to say my regular vestibular symptoms are superseeded by these more recent acute ones.

I heading away for a week, seeya then.

I'd like to add a few suggestions that you might find helpful. I've sufferred this bloody affliction for almost 20 years (I'm 58 at present) and have had ample opportunity to observe it's comings and goings in some detail. My first bout came on after an extemely seasick passage on a sailboat off the coast of Nova Scotia in high storm force winds. I was pretty surprised to find the "seasickness" persisting days later with the room spinning, the pressure in the head, the odd look of everything........ It gradually wore off after a couple of months and I felt I think pretty normal until a couple of years later when I did a very long distance motorcycle trip and ended up having to halt after 5 days on the road with those same gastly symptoms. Oh, what a surprise!! O.K. I won't go on recounting episode after episode as they came knocking over the years but I have made a few observations; 1: The condition in my case is most definitely brought on by my ears/head becoming chilled. If it's cold enough outside there need not even be any wind to bring this on but a wind will make things worse the harder it blows. Have any of you perhaps noticed that an attack may be preceeded by a chilling of the ear/ears? I now take elaborate measures to ensure my head is covered and warm in all conditions when outside.

2: Motion also can set this thing off. -I took up jogging about 8 years ago and after 3 days of shaking and pounding I had to quit with the dizzies. ............Anyone??

3: I noticed that Ginko Biloba was mentioned a while back. YES! Try it! -it's only my personal experience of course but I started taking it about 10 years ago and after about a month I noticed I could walk with better balance and I no longer had to fear drifting off course and bumping into people in malls etc. I know that it very definitely works in my case because I stopped taking it several times over the years thinking I had become symptom free and surprise,surprise, I slowly became vertiginous once again. So.....I started taking the capsules again regularly and in about a month I would become relatively stable again. I now take them without fail no matter how my overall condition appears to be at any particular time. I buy in bulk from a health food store and lode my own veggy caps. I have found the Ginko to not prevent acute attacks (I still get them about once a year)but it markedly improves my general sense of balance between 'bouts'.

3: GINGER. I used to take Gravol in an attempt to control my vertigo in the worst of the attacks but I found it actually made me feel worse. Someone suggested Ginger and yes it made a drastic improvement. I find it won't stop the spinning when the attacks are at there worst but it certainly reduces the nausea! It kind of feels a bit odd in the stomache but were feeling pretty odd about then anyway. -it's a better odd.

4: I find the application of heat to my ear (it's my Left ear - anybody noticed how often it seems to be the LEFT ear?) feels really good at most times and especially when it's sore. I assume it must be doing something beneficial for the overall condition.

Anyway, that's enough for now. Moderate exercise seems to be of great benefit as well. I would really like to help as of course I can empathise with you all sooo well.I 'feel your pain' as they say.

Rich, I just realised I didn't include my e-mail and I suppose you check out where these postings are coming from to block out the spam. I wasn't sure I wanted my e-mail posted right off on your site but I guess you don't post it anyway? I'm new to the internet and I'm still a little shakey as to the protocol. By the way thank you for the service you're providing and I hope my posting can help a little.

Hey laurie, Can u let us know what your good days and your bad days are? And how long b4 you went back to work??

On good days I can catch buses and meet my mates at crowded bars..and go to movies..

On bad days, i cant!

Anyone got any idea how far i am and is anyone at this stage?

Thanks! Dee

Laurie....one question im just about good except for my eyesite is still alittle spacey feeling...do u still have alittle spacey feeling or did that go away completely.....mine is 6 months and im def. 10 times better than i was a few months ago...LET ME KNOW???

Tom, I look at the actual contents of comments to decide whether to approve them. If they look like they come from a human then I approve them, if they look computer generated then I don't. I don't have any more detailed editorial policy than that.

Hi, everybody

Laurie – you are very welcomed. If I could make you feel just a little better - it makes ME feel better too.

Cop and Emma – somehow my long experience of dealing with recurrent VL bouts showed me, that when we push ourselves TOO hard from the beginning to move more and to do more things (our studies, job, VRT exercises) - it gives the opposite effect: instead of getting better – we get worse. It happened to me 5 times in my lifetime– the situations were quite different (with job present or staying at home, or doing or not doing exercises). The more I stayed at home and the less I move my poor head from the beginning – the shorter was my recoveries. I analyzed all my experiences (believe me in that!) before I came to this conclusion.

Now I am staying at home taking a break from my job and just doing NOTHING. I am feeling a whole lot better, than a month ago, when I almost collapsed several times at work.

Hugs, Anna

Hi Everyone,

Dee, Good days I can do just about anything and feel pretty good about it. Bad days, I am up and about around the house, but must admit I stay close to home for fear of an attack. Its not even really the dizzies anymore, yet a strange maybe should I say lightheaded feeling. I seem to be dealing with issues of the "FEAR" and anxiety of it getting bad again. Trust me, I was sooooooo bad in the beginning that I couldn't function, couldn't eat because the dizzies and anxiety that comes along with it made me lose my appitite....I was a basket case!!! I'm happy to say, my normal wieght is back, I go places all the time, trust me some days its still a push, but I do get out. I also take xanax (anti anxiety meds) to calm the anxiety down. But YES life is getting better and better.

Chad, Yes the eyesight thing can still come about with me, but I just except it for what it is and know that it will pass as all the other symptoms have slowly done. :) Whats you're eyesight doing exactly???

Laurie

Tom – Thank you so much for your input. Great observations about GINKGO BILOBA! I have heard many good things about it and even read a couple of scientific articles about it benefit when being used on a I tried it once but for a short time. Probably, I was expecting immediate results which did not happened. Then I quit. I am going to start taking it again and I will not quit this time. I will take GINKGO BILOBA on a REGULAR BASIS.

Anna

Me too - bought the gingko and will try it - when I'm brave enough! Am up for trying ANYTHING now! xxx

Thanks Laurie!

A few more questions though!;)

On energy levels - i feel spacey and tired when i go out...in my 3rd month -

1) for the first 6 months did you feel tired when u went out ??

2) when did your energy levels come back to normal? after how many months?

3) How many hours sleep did you need first 6 months?

I work 9-5 from home on computers, so when i go out its usually after working at home for the whole day, to a friends place or somewhere a short bus route away! But I am tired & spacey !

deee

this is what mine did first 2 months just slept all the time and all those other symptoms pains, hear heart beat, etc. months 3-6 my energy level came back but eyesite is still alittle foggy spacey feeling

Hi Dee,

I had a MAJOR problem with sleep..I couldn't!!! I would wake up having anxiety and panic attacks. My sleep has gotten much better, but I only sleep about 6 hours a night. I am a stay at home mom, I have to say when I get up in the morning I feel okay, but get tired a few hours later...always feel like I'm dragging. I too felt the spacey feeling when going out, to be honest with you I think my symptom of that was more due to anxiety. I had alot of anxiety with the labs because I was scared to death of what was happening to me and thought it would never go away.......IT does!!!! Its a slow process and can get very frustrating, but it does happen!!!

Em, Are you have a difficult time again?? Noticed some of your posts, are you okay???

Laurie

Thanks chad & laurie

At least i know i aint going crazy here and that energy levels do come back and i must just hang in as im only on month 2+ !!

Hope u doing ok em!!

dee

Just a quick poll here -- Does anyone see their symptoms get better in the evening, does it get worse in the evening or does it stay constant all the time.

I have constant dizziness but it seems to get less severe in the evenings. It still sucks though -- I am in my third month right now..... I am stil waiting very hopefuly to start seeing some dizzy free time. I HOPE IT COMES SOON!!

Bless u laurie for your concern. Pretty downbeat yeh...sorry.

Sam - normally labs gets worse in the eve as you are more tired but everyone is different...

xxx

to Sam Responding to your quick poll.

Yes indeed. I personally find that during the most acute phases of this thing the condition improves toward evening. Yet the next morning it might be just as bad as before. It used to surprise the hell out of me at first! I have recurrent episodes at the rate of about once a year by the way and I find now that the quickest route to recovery each time is Total Rest including as much sleep as possible. Before I became Very Careful with this condition I went through a few years where I would be flattened repeatedly. (I hope your experience in the end proves to be less chronic than mine tho.

No Tom!!!

Mine is chronic.... Totally Chronic... This time it just seems to be taking longer.

But Maybe you are right... This time around, I was so active, I played sports etc hoping that it would get better faster and I would run around doing things..... I felt terrible but reading alot I thought this would be a quicker end to the nightmare. Turns out I was wrong... I think rest would have totally been better for me.

Sam

Hi Em,

Please don't ever be sorry. We are all here to help each other :) You have helped and supported sooooooo many people, now we need to support you. Here for you Em!!!

Laurie

Hey Tom,

I am really sorry that yours is recurrent.. I hate this thing with a passion -- It has driven me nuts like you would not believe. Its hard to get t otal rest.. I have been taking it easier for the last 2 weeks or so.... Just trying to relax a bit more. Before when I woke up, I would not even take a nap... I thought the more I stayed upright the better shot I would have at kicking this thing. I am now laying down when I feel like it... and dealing with the dizziness when I get up..

Em - Yea I think everyone is different... On the other boards I do know quite a few people get a lessening of severity of symptoms in the evening.

Tom,

Sorry for the multiple msgs... But your totally right about being surprised when it returns in the morning.... Its soooo crazy... I mean... If I stayed up all night, would it just return in the morning... I have always wondered that but could never really stay up to test it out.

Sam

Tom - what is your regular dose for GINKGO BILOBA?

Anna

Thanks Laurie :-)

Will be away for about 10 days - just so you know why I wont be on here. Thinking of you all.

xxx

Anna and all........... I buy powdered pure Ginkgo in bulk from a local health food store (in Courtenay, British Columbia, Canada) and load it into size 0 veggy or gelatin caps. It's way cheaper in bulk. It's kind of tedious but it's also kind of satisfying loading that obviously real bonified leaf. I take 3 in the morning around 7am and 3 in the evening around 9 o'clock. It took some weeks before I noticed any effect and I almost stopped the first time after about 2 weeks when nothing seemed to be happening.Even as I carried on and I DID seem to begin improving that first time, I sort of told myself "well, it's probably just time rather than this old tree doing the healing." It took a few periods of closely observing what happened when I stopped taking Ginkgo to covince me that it was of Such Benefit.

I've never been in touch with others suffering this thing. It feels a bit peculiar as I got so used to going through this all in my own private little periodic hell. I don't know whether this will help but you DO become pretty stoic about the whole thing eventually. The original panic recedes. It's a funny thing but I think humans are so adaptible that eventually they can adjust to just about anything.

Hello Fellow Labbies,

I got VL just about 1 year ago and I am 100% recovered. I remember very clearly the dizziness, the insomnia, the fog, the tiredness all the time, and the fierce depression that set in around 6 months. I thought I was never going to recover and trying to figure out how I was going to live in the "altered state" for the rest of my life. Everyone, including my doctors, that it goes away slowly and they were right. Even last month I was still being effected by the barometric changes. So, even though most of the people you know don't "get it". This virus is unbelievibly disabling and you need to cut yourself some slack. You need to get more sleep, drink lot's of water, take vitamins and exercise. Way more people have this virus or know someone who has it. Kind of like mental illness, most people have someone with it in their family, but really don't want to discuss it. All the symtoms you are experiencing are real, you are not making them up. You learned about this disease, through your research, and anyone who cares about you can too.

Thank you Rich for providing this website.

Thank you Anna for your sharing your knowledge and giving so much time to all of panicked suffers and thank you Emma & Ilia for all your help.

IT GOES AWAY.....MOST OF YOU WILL BE 100% AGAIN.

THIS VIRUS IS HORRIBLE, BUT IT WILL GO AWAY.

Good luck and try to enjoy the summer.

Robin

I am so happyyou have recovered - NOW GO OUTSIDE AND ENjOY YOURsELF!!!!!!!!!!!!

Dont let anything bother you and aways remember this disorder when you think you are going through a rough time.....

congrats!!!1

Sam

Hey Chad - Reading through your comments we seem to have the same recovery process/time..

I read that at 3 and half months you still got tired easily, and if you went out the nite before - you were real tired & had to sleep more the next day..

When did this stop happening and when did the change occur? Ie - When did you stop getting tired so easily and when could you go out and hardly feel it the next day?

Thankyou!!! PS - I think you are at 6 months now?

What symptoms do you still have?

Deee

my eyesite is really only my problem left....was the last of your symptoms.....the spacey head feeling and if i do way to much i get alittle tired but my stamina got alot better...feel me in in the last stages...cause im gettting better its been 6 months for me LET ME KNOW ROBIN???

Robin - thank you for the incouraging post.

Good Luck!

Anna

Dee --

By the time the day is over for me... I am exhausted.. I feel like I can hardly get enough sleep... I dont know if more or less sleep affects how I feel the next day.. I cantreally judge the next day as bad or good.... Its strange.

that was me on that 2nd last comment asking robin

let me rephrase that robin....6 months and the eyesite feels like my only problem left unless ...i run on the treadmill to much my body gets alittle tired but for the most part robin WAS THE SPACEY HEADED FEELING THE LAST OF YOUR STAGES??????

Hi everyone,

I had a testing session with the balance clinic today.

First up was hearing test - normal, but right ear is a bit 'low' normal, which may be why i'm hearing a bit of tinnitis sometimes in that ear. Doc told me the thing with tinitis is to just ignore it. It doesn't bother me anyway, it's just a tiny bit when im going to sleep and its quiet.

Doc also put something in my ear that changes the air pressure to check if the eard drum is moving fine. Mine is fine.

Then they put electrodes on the sides of my eyes and brow and put goggles on my head with a camera that tracked eye movement. Water was pumped through my ears, both left and right, one at a time. First cool, then warm, to measure my resopnse to it.

When the water goes in it feels funky, then it makes the fluid in your inner ear start swirling around! It makes you feel like the whole room is spinning quite violently. If the room doesn't spin it means there is a dysfunction in that ear.

My results were again within normal range, although left ear was less sensitive than right. There is a 20% range leeway and I was within that. However the difference might explain my persistent yet lessening symptoms.

I guess this means there is no major dysfunction of my vestibular system. Hooray!

I'm just crazy then. haha nah, I'm getting better! I guess if I can work 12 hour shifts and drive a car no worries then I'm not too bad.

If anyone wants some more info on these tests feel free to ask questions. It was pretty interesting doing it, however the water induced severe dizzyness was pretty scary. I felt really anxious because it brought back all those dizzy emotions. But it's reassuring to get an idea where I'm at and for them to narrow the problem down. They can even look at the results and work with you to better your condition.

COP i had the same done my right ear didnt get me dizzy i had damage in my right ear..pretty bad but i could still hear fine and everything but i know it was my right ear.....im also getting alot better...i know ill be better in the next few months as soon as they spacey head feeling goes away ,lingering.....

Chad,

Labs isn't going to just disappear. It's going to fade away. The symtoms slowly decrease. Then one day you'll say " hey, I haven't a problem in a while". At six months I was feeling much better, but I was still fatigued and off. I kept thinking I was well, and then when one of the many symtoms came back, I got all upset again. Take it easy, you are in the mend....there is an end in site. Take care and be easy on yourself. Go to the gym and work out easy, get lots of sleep and drink as much water as you can. Happy end of summer.

Chad, Cop,

Same thing.. I just had my ENG as well and when he put the cold air in my right ear I didnt get dizzy at all.. I actually just got dizzy with the warm air.. I dont know what that is.... I still have to get the results from the test... I always thought it was my left ear that was the problem but both air types in that ear induced spinning.

Sam

Yeah chad you'll be right mate. We're on our way to recovery. My spacey feeling is lingering too, heading into my 4th month.

Alicia Molik, who got VN the same time I got mine, has re-entered into a tournament. You can see the article on the SMH website. It's good to see she has recovered sufficiently to play competitive tennis. However she would hav all the best docs and rehab treatment. So she would be recovering faster than us. She is still not 100% though, gathering from the articles. They reckon it takes a while to do that. I don't care how long it takes anymore. I'm over worrying about it. As long as Im always improving.

I found another website, it's much more active thatn this and the posting system is easier to track. It's called 'the dizzy lounge' and it has some great resource articles. Check it out, I've joined. There's live chat too!

http://p084.ezboard.com/bdizzylounge

Sam really. they put warm/cold air in your ears? Interesting...

I noticed I responded more to the warm water than cold water in left ear. Although I still responded to the cold, just not as violently.

Has anyone had tinitis from labs, and had it go away? I'm a bit concerned about mine. It's really only noticable in the absolute quiet, but I've never had it before, and wondered if it goes away at all. Anyone know much about it?

Hey Sam -

How long have u had this & what symptoms do u get now? just tiredness at end of day?

dee

Wow, I'm amazed I missed this. Back in 2000 or 2001, I think, I had a case of labyrinthitis. It hit me while I was at work. I was feeling a little nauseous, then a little dizzy. I sat down, expecting the dizziness to pass, when the world started spinning and I started throwing up. I fell out of my chair and grabbed the waste paper basket just in time to catch the first of many heaves. I was convinced I must be having a stroke or something like that, as even the tiniest movement of my head or body caused more vertigo and puking.

I ended up taking valium and something called "Antivert" for the better part of two weeks. Getting better was almost as bad as getting sick, as the withdrawal symptoms for valium, in my case, included a whole night of recurrent night-terrors, one after the other.

to cop, Yes I had tinnitus for the first 3 or 4 years after I began to have all the other symtoms.After a couple of years I thought, "well I've got this ringing for life now I guess, along with all the other crap! ...what's next I wonder?" Well guess what .........it TOTALLY disappeared and for the past 16 years I've been free of tinnitus. Small mercies eh?

Yeah, small mercies Tom! I think the Tinnitis is the result of nerve damage, not permanent damage to my inner ear. Same with you maybe. That's why it can heal after a while - nerves can sometimes regenerate if they're not totally destroyed. Everyone, get onto this board:

http://p084.ezboard.com/bdizzylounge

There's heaps of info there. I'm there as 'SydneyCop'

Hey Cop,

Where on that board is the best? I See theres a labs board but not many posts on there and i dont see sydneycop!;)

dee

It's Under 'discussions' and 'dizzy lounge message boards - post here'. That's the active section where everyone posts. the rest is archived articles and posts.

I posted back in June right when I got this problem, and it has almost been 3 months now, and I can tell that I feel better. I can relate to what Chad is saying about the "spacey" feeling....and just not being 100% normal. I went to a wedding this weekend and drank at the rehersal dinner and then had to be in the wedding the next day...and had to fight through it and left the reception early. Usually when I get past a couple of drinks, I get to feeling like Cop said...normal again. My friends and social situtaion had always been going out and having drinks....and I know that I can not live that way anymore....as much as I would like my old life back it just can not be that way...at least not right now. I also want to go back to work but I am afraid that it will set me back and make things worse to be in a stressful situation. Anyhoo....just wanted to relay that I do feel better and can now go to the grocery store and the mall and stuff.....but it is still baby steps to feeling completely normal again.

Lauren

Hi, everybody

I am very slowly (with ups and downs) recovering from the 5-th bout (in 33 years) of labs/BPPV/Perylymph fistula). Still very week and staying at home. I restricted many activities including my working on the computer (for 20 min a day). All the restrictions helped so much to feeling better!!! I will post about my progress later. Cop - you are right - this is a good site. Everybody - visit it!:

http://p084.ezboard.com/bdizzylounge

Hugs, Anna

Dee

you want to click POST YOUR MESSAGES HERE up top on the lounge Its like the first section

Lauren --

I also have had this for 3 months now.

Do you feel tired all the time & feel that you need more sleep now?

How long can you handle being at the mall?

Do you go out all the time at weekends or do you stay more at home now that youve had this?

Dee

hey, i have had labyrinthitis for 5 months now, and woz just wondering if anyone could tell me whether the VRT actually works...am having a bad day and really need some encouragement :`( thanx

went to ocean city just got back drank all 4 nights felt good...im getting better except one day pretty tired but my eyesite was still spacey the whole time....i hope im almost there its been about 6 1/2 months

Dee....I worked for about a week when I first started having this problem...not knowing what it was....but then I left my job soon after b/c I just couldn't deal w/ my head spinning and the pressure of being at work. It has been about 3 months now and I have just been taking it easy at home, and excercising about an hour a day....but sleeping in..in the mornings. Excercising makes me feel better and I don't feel that tired when I do it either. I haven't been going out on the weekends either which is something I used to do every weekend...the most I will do is go to dinner and then come home right after b/c it drains me to be out. When I go to the mall or the store, at most I will spend is an hour....it is always a little shakey at first, but I think that is partly to being scared and then I start to feel better and more used to it after a while of being there. I want to start looking for at least a part time job....my ear doc today said that the best thing for me would be to get back to doing normal activities.....like working, to get my brain used to functioning normally again. I do feel better though...so there is hope and I do beleive that this thing will be gone very soon!

Hi there everyone,

Just to let you all know, after five months of this dreaded illness I am coming out of the haze. I have been dizzy free (or about 95%) for nearly four weeks now, yippee! I feel so much better. I have had 5 months of dizziness, being off balance(though that only lasted appx 2 mths), terrible anxiety. I have been frightened of supermarkets, large stores etc. Have been leading a pretty limited life during this time. I am not back at work yet but will be back in the next couple of weeks, I feel terrified of this prospect, like a new starter! I still feel under pressure in restaurants and busy places. I get a weird feeling in my head, not dizziness but I know it is coming from my ears, however, I have been told this is normal at this stage. I count the minutes til I get out of these places but at least I do it. I still don't feel 100% 'me', still feel a little weak, but hey, what the hell it is so much better than last month.

My ear still feels a little funny at times but I have had a terrible cold and the flu in the last two weeks and no major dizzies which is a good sign.

Lamb - I did the VRT though I have not actually been given them by my ENT yet.(I'll probably be fully recovered by the time they sort me out!). And I definitely do think that they helped. Also, I think the best thing to do is to get out and walk every day. Keep moving your head while you are walking and do it when you are feeling at your worst because this helps your brain to compensate.

Take care everyone and keep smiling xx

SANDIE

VRT can make you worse - that is for sure!

If you want my opinion (from my personal bad experience!!), stay away from ANY types of exersises. Do everything slowly and carefully, at your own pace. Do not push yourself to do ANYTHING, that makes you feel more dizzy and more tired. REST A LOT!

Anna

were have the posts been

I think in the early stages its important not to over-do stuff but VRT can and does work - and is the key to getting better for many - after all, the brain needs to know you are dizzy in order to compensate. VRT takes a long time and a great deal of perserverance xx

Hey Lauren / Sandie

(where are you two from?? How old??)

Im 26 - in London

I think we are all pretty much on the same sort of recovery path..its been 3 and half months for me...

I am still tired/weak.. I work at home as a web designer as i cant get back to the office yet -

But things are improving -- I have been to the cinema a few times & have felt fine!(although in the beginning a little anxious therefore a little dizzy)

Weekends I usually take it easy - sleep later & relax - they are usually when I am most tired as i have worked all week - even though at home i think being on the computer the whole time can drain you. Though when i get a bit of energy i try to get out - go to a friends place or to a bar for a few hours with friends..somewhere local though and not long distance & just catch a bus..

Shops i can only also do for about an hour or so..

But the good thing is that we are feeling better!!

dee xx

sandie and em- thanks so much for responding i have been reffered 4 the VRT by my ENT but started some exercises and moving around, and was making good progress until the other day. i had managed to drive and shop for the 1st time in 4 months but that night started spinning etc and have been almost back 2 the beginging again since, hence my post.do u know if this i s common and if i shud still keep moving etc

trying to smile, but its hard lamb xxx

Yes VRT can worsen things - keep perservering with it. For info on VRT if you havent already seen it - see labyrinthitis.org.uk and click on VRT.

xxx

Anna,

How are you doing? As of last post you said MUCH better.

Sam

Hi Dee,

I'm from Newcastle upon Tyne, age 44 but still young of mind!! I too have actually managed to go to the cinema this week. I love going with my youngest daughter to see all the kiddie things, she's 8 years old and my oldest who is 18 in a couple of weeks to see the more adult things. So I have really missed it for the last 5 months with having Labs/anxiety. We went to see Bewitched which wasn't very good but I was so proud of myself. I started off with some earplugs (felt a bit daft putting them in), cos the adverts and trailers are so very loud but I took them out when the film had started and I was OK. I went shopping in town before and after and actually got a bus home, about a half an hour journey which is another thing I was absolutely dreading. I haven't returned to work as yet but will in the next couple of weeks. I still feel a little tired and when I am in places I do get a funny feeling in my head and it comes from my ears, it's not dizziness but it does seem to pass after a few minutes.

Lamb - Em is right the VRT can make you feel worse but it is getting the brain to recognise that it is receiving the wrong signals from the damaged inner ear, this is why we are feeling dizzy etc because the brain is not compensating but it will eventually and the dizziness will go. I must say that they didn't make me feel too dizzy but I did them religiously just in case they were helping. What did make me dizzy was going out for a walk. I felt as if the land was moving when I looked around but I persevered with that and I think that is what helped me most. Also, makes you feel better getting a bit of fresh air. I have discovered places I never knew existed on my own doorstep!

Well I guess summer's nearly at an end now here in north east england. Such a shame because I love the summer. We've actually had a good one this year though I haven't been able to enjoy it so much with this illness. Never mind heres hoping for next year! Take care everyone.

SANDIE xx

Sandie --

Im proud of you that you managed to go out & do all that!

I also feel a bit weird going out - funny feeling in my head sometimes dizzy in beginning

DEFINATELY --- Heres to next summer and heres to a much more enjoyable one without the illness!

Deee

Sandie

I found your post really encouraging I am also 44 (hope this isnt an age related thing) and up until today my Daughter had to post this for me hence the name Lamb (Her choice - not mine). But I have decided to try and use the comp again this week. I havent had a chance or been able to read the previous posts so I am sorry if i ask things that have already been covered. During your Labs have you found that certain things make you worse to the point where you have to go back to bed or take medication? Have a good Bank Hol to everyone that reads this. Hope you are all feeling well. Take care Lamb XX

Hi all, I am a different Rich than the owner of this site. I have posted here before. Recommended the B and gingko and arnica gel.

I came down with VL while on a cruise in mexico in 3/04. I have still had some symptoms of VL at times. I just went back to my ENT. He is thnking that my problems are more allergy related. I am going to be tested this week for allergy reactions and then possibly go back on allergy shots. He has noticed that my sinus's are inflaming my eustatian tube at the back of my throat and are possibly causing the backups to my ear. Has anyone else been tested this way or hears the same thing?

Sandie - the n-east is my home also - love it - not currently there though. You sound like ur improving a lot - with only a weird feeling in the head - I am dreaming of that day! Well done for getting out and about and keeping moving - often hard with this! xxx

Hi,everybody

Sam - I am doing much better when I am just staying home and strictly restricting ALL activities connected with sounds (including talks, TV, telephones, speaking, listening, etc.) Walking slowly and in silense for 15-20 min. in the nearest wood is OK. Before I had taken a break from my work 2 months ago, my noise sensitivity and headaches were absolutely horrifying - to the point of fainting. My balance (in silense!) in almost good. But when is is noisy - I get very unsteady! I suspect, that I have a problem with perilymph fistula in my left ear - I suspect, that I got it from doing Brandt - Daroff exercises, which made me much-much worse. (bad advice from a local ENT doctor).

Of course - everybody's problems are different. But STILL BE VERY CAREFUL WITH ANY STRENOUS VIGOROUS EXERCISES - you can damage your inner ear!

Anna

Anna - I have never heard of damaging your inner ear by VRT - it isnt possible - it can mess up an already delicate/damaged vestibular system - as in cause decompensation. But the only way such exercises would make you feel much worse over a long time is if you actually have some BPPV going on...

xx

Hi Lamb,

I was told early on by one of my GPs not to take medication, though three other GPs told me I must take it. I decided not to take it after about 10 days of my illness as it made sense to me after I had done a little research. All the time that you are dizzy, your brain is trying to compensate for the inner ear damage. It needs to feel dizzy to do this so you must keep as active as possible. In the early days I forced myself to do the exercises and to walk. I did keep away from supermarkets etc because there was no way I could face them and even now I have 'moments' in the shops but I am getting over them now, I just try to ignore them. I keep telling myself that what I have is not life threatening and I am NOT going to fall over! You have to keep telling yourself that you will get better and that there are always people worse off. Get out there and smile at the world, you will find that little by little you get better and you will just do things without thinking and suddenly realise 'hey, I couldn't do that a few months ago'.

The brain is a wonderful thing. I have felt a little off balance yesterday and today though not dizzy. But I am thinking hey, it's not so bad, I can cope. I went for a 5 mile walk along the beach yesterday, had a wonderful time. And today, I have been messing about with the garden all day and then went for a 3 mile walk. So, life's pretty good. I think this illness makes you appreciate the simple pleasures in life!

The worst things for me in the early days were the noise from the TV, I couldn't make a telephone call, people talking, not necessarily loudly, the sound of someone washing dishes. I couldn't hold a conversation for 5 minutes but I was wishing for that person to go. I didn't want to see anyone, I turned from an outgoing friendly person into a recluse! This all developed into terrible anxiety to the point where I couldn't stand to be enclosed in a room, I always had to have the door wide open. I couldn't bear to have the curtains closed in our bedroom at night and something so weird, I couldn't wear a watch, I just couldn't stand to have one on! But, I also had the sense to realise that the anxiety was illness related and that it would go when the illness went away and yes I am now wearing my watch!

I must say that wherever I go I do take some medication with me just in case I need it. Just a little bit of security.

While I know I am not fully recovered I am happy with the stage I am at and I know that if it comes back I will deal with it.

Em, which part of the north east are you from?

Dee, I am so looking forward to next summer. I am a summer person. Just love it, but it has been a bit of a bummer this year. I did however manage a wonderful holiday in Scotland and was getting better just before we went away so thank god for small mercies!

Take care everyone, keep smiling x

SANDIE

Dee I am 29 and live in Dallas, Texas. Basically I have had this thing all summer and I think I am at the end of it. This directed at anyone who has any answers.... How will I know when it is gone? Will I ever feel completely "normal" again? I am fine in my house but have a weird feeling in my head when I go out. I need to start working again, but I am not sure that this is gone away. Will I be okay w/out the VRT excercises? My insurance just ran out. Also....does anyone know if we can do stuff like go to the amusement park on rides, or on a cruise...or stuff like this ever again...or will it bring everything back. Just curious...thanks!!!

Lauren I am 27, in London, but from Cape Town, South Africa. Also had this all Summer!

I am fine in the house too, just tired at times.. Sometimes i also still have morning nausea??!!

Heres the thing -- You got to test yourself with going out, dont overdo it but thats the next step.

Go to movie with friends one night. See if you are ok. Go to dinner the next night..

I find that on weekends say a friday nite i can go out with friends and then the following saturday i can go shopping or something, but after that I am tired as going out drains you so you need to rest.

You will be able to do all that stuff again! I am sure i will be able to but also its a matter of getting your strength back..

I used to love summers!! Always been outgoing person and organised trips ect and now i have missed out on 2 trips!! (i live in a houseshare in london - so trips away are never relaxing and chilled, they are bussy busy busy all day sightseeing stuff and i didnt think i could handle it!)

You know when you see movies that have a timeline and the next scene they have subtitles saying: "1 year later"

I always think - my "1 year later" I will be totally over this, probably doing something completely different, and getting on with my life as if this never happened

Sandie - will email you at some point as dont like to give personal details away publicly - cant remember if ive emailed you before but I know you've signed my guestbook...

xxx

just a question ive had labs for 7 months now...and i seem to shake alot like inside tremors mostly at night when lying down..its like muscle twitching alot.....i think its from my body being so tired anyone else experience anything at all similiar?????

Emma - you are right - I DID have BPPV when I was prescribed to do Brandt - Daroff exercises by the local ENT doctor (what a jerk!). But I found the same suggestion for these same exercises in the newest book Consumer's Handbook on Dizziness and Vertigo. They still prescribe them for BPPV in order to reposition calcium crystals in many clinics (!!!) These exercises made me terribly worse (I think they caused PLF - according to all my NEW symptoms) already twice (in 1995 and in 2004 !!!) I am so much afraid of ANY kind of exercises which involve ANY head movements UP, or DOWN, or bending over. or jumping, or jogging (!) Only SLOW WALKING at this time!!!! Emma - thanks for your input, anyway. I appreciate your opinion very much.

Question for everybody - have anybody tried SERC (Bethahistine), or Cinnarizine (Stugeron)??? They are not FDA approved in the USA, but they are used for dizziness in other countries. I heard from some people in Russia and Israel that they help!

Anna

Dee thank you....your comments are very helpful. I guess just being healthy is the main thing and the rest will follow. I too missed out on loads of trips this summer. sux.

Anna Yep thinking about it I know PF can be worsened by VRT....but I guess I was saying labyrinthitis cannot be...

Yep, I find stugeron helps me - only ever taken it for like, 4 days at a time which apparently isnt long enough - but if Im VERY dizzy it takes the edge off it. Ilia tried it for a good 8 mths once and it almost cured her. BUT and heres the BUT - of course meds are not to be encouraged as they do nothing for recovery in the long term so I literally take about 1 or 2 stugeron a year if am horrendous and thats it.

In the early days I tried serc for 2 days - didnt help me but again, I think you need to try them for some time. Wouldnt advise this route however...!

xxx

Chad,

Are the trmors like twitches or is it constant shaking internally or externally? I mean, does your leg twitch and then stop then start later?

These may be some signs of anxiety as well... Shaking, tremors etc... Anxiety can play a huge part in this illness... It can make you crazy alone.

Other than the trmors how are you doing? Is the spaciness gone yet?

Sam

Hi, everybody

Rich - of course, allergy has a lot to do with inner ear problems. Just by location - sinuses are closest to ears!!! I have heard from a lot of dizzy people, that their symptoms worsen during allergy season.

Emma - Serc is not a vestibular supressant, as far as I know, so probably, it does not slow down compensation if taken for a long time. Maybe, it is worth trying.

Chad - I think, that you have this trembling and shaking, because you are EXHAUSTED. I shake like crazy when I OVERDO TOO MUCH.

Sam and Tom (guys with recurrent bouts)- how are you now?

Sandie, Dee and everybody on this site - keep going - you are on your way to recovery!

Hugs, Anna

Hello everyone, I stumbled upon your website by accident whilst trying to find details of Meniere's and Labrynthitus. I have spent several hours going through all the comments posted over the last couple of years. I first had an attack almost 5 years ago now, these are in the form of sudden tinnitus (buzzing like the overhed electricity cables in winter) progressively getting worse until i am eventually almost deaf, followed by extreme violent vertigo (this all takes just a few seconds). If i try to walk i am unable to walk straight, it is as though i am drunk and i will always go to the left crashing into anything that is there. I sweat profusely and sometimes feel sick. These attacks last between 1 minute and 5 minutes, afterwards i feel absolutely shattered for several hours. This has been occuring on average about once a month for the last 5 years. I have logged all the incidents for the past 4 years to see if there is any common denominator in respect of food, drink, actions, locations, environment, mental state etc, but with no success. I have seen specialists for the past 4 years (and am continuing to do so), which have included Heart checks and monitors, blood tests, hearing tests, brain scans etc etc. My Doctor sugested when i first saw him 5 years ago that it may be Meniere's disease/syndrome, and as it was likely to be 6 months or so before i got to see a ENT specialist that i should try a course of stemetil to see if that helped. Unfortunately this seemed to have the reverse effect and the atacks became more frequest and more violent, i therefore stopped taking these tablets after a couple of months. When i eventually saw the ENT specialist he said it definitely was not Meniere's and i should not take the Stemetil and that he would need to carry out more tests to see what was causing the attacks. The following two years were taken up in having all the various tests done (NHS speedy processing). When i saw the ENT specialist againhe said that all the tests had shown no abnormalities that would account for the attacks, he then suggested trying Stemetil as it could possibly be Meniere's Syndrome, I of course reminded him of what he had said at our first meeting, to which he replied "there is nothing more i can do you will just have to learn to live with it, it is clearly not a life threatening illness whatever it is". I went away feeling less than happy after 4 years of completely wasted time. The following day i contacted my Doctor and he said he would arrange for another specialist to look into it. This of course took months more before i saw someone else. At this time i had a bout of movement induced vertigo which my doctor put down to BPPV, he referred me to a clinic who did various manipulations of my head and advised me to try keeping my head raised at night and not to roll over for the next three nights, at last something that worked. When i saw the new ENT specialist she was much more understanding, i went through all the symptoms again, but she said that based on what i had said and her review of all my files, that this was a classic case of Meniere's syndrome. She suggested that i cut down on Salt and Cafiene, i explained that i had been on a low sale diet for years and only ever had de-car coffee. She suggested i monitor what i had as there were many things which had excess salt already in them and cafiene was present in many more things than just coffee. She suggested i come back in 6 months time to review things. The next appointment is next week on the 8th September 05, and since my last appointment with her things have gone downhill. For some time now i have had the buzzing in the ears constantly, this seems to vary in volume, i have had numerous vertigo attacks, many more than the one per month that i used to get,plus i get the onset of the attack come in waves throughout the day but not quite becoming a full blown attack. I also have periods where movement (not just of my head)seems to trigger the onset of vertigo feeling but not quite becoming a full blown attack. My last attack was last Wednesday evening, i was just sitting reading when i got the most violent attack to date which lasted over 30 minutes, during this time the sweat was litteraly running of me all over my body and i was unable to move or i would have been violently sick, my hearing went completely and i must have either passed out or fallen asleep because the next thing i knew it was two hours later and i was sitting there absolutely soaked to the skin with sweat and a massive headache and pounding in the ears. i managed to get to bed and to sleep but when i awoke the next day i could hardly hear and the tinittus was greater than normal, this deafness persisted for two days until i decided to try Stuggeron travel sickness pills to see if they would help, well the hearing was better after a couple of hours of taking them but i could not decide whether this was the tablets or just time had recovered my hearing. I do lots of excercise of a gentle nature (i play golf at least 4 times per week) and am fairly fit 12.5 stone 6ft tall. I did have a pereiod early on where i had associated the attacks with the cholesterol pills i was taking (Statins) i was definitely having more frequent attacks when i took them, after a few months my doctor changed me to Fenofibrates which brought the attacks back to their norm of 1 per month. The question i have is , does anyone know if this will continue to get worse? i have tried my best to work round this problem but the severity of the attacks lately are leaving me pretty low. I have the feeling that when i see the ENT specialist again on Thursday next that she will just say sorry we cannot do anything for you. I will try taking GINKO BILOBA as i think anything is worth a try at the moment. Thanks for the excellent website and its nice to know "WE ARE NOT ALONE".

Regards Brian Sutton Worthing

Hi, everybody!

Brian - you are NOT ALONE and we DO UNDERSTAND. Have you ever tried SERC (betahistine)? You do not have anything to lose, anyway. Look at the following article written by a patient had been suffering from an inner ear disorder before he found a strong relief from taking SERC: I am not saying, that it will help you personally, but why not try????!!!! Talk about it with your doctor on your next visit. Perhaps, she will be not very enthusiastic – SERC is not FDA approved…… Actually, during my long life experience with my inner ear disorder and negative experience with many doctors I learned very well, that first of all I have to think and analyze every bit of information MYSELF.

The link I recommend about SERC is: http://www.menieres.org/martin.htm

Emma - by the way, the author of the above mentioned article gives a reference to a research study where they did not see any evidence that SERC slows down “habituation” (“habituation” and “compensation” are probably somewhat similar processes).

As for me – I am doing much better on the 21-st month of my 5th (in 33 years) bout of labs/BPPV/PLF (or whatever it is, I prefer to say – inner ear disorder). I have been taking SERC for two weeks. I do not know whether it was SERC, or plenty of rest and not working and very restricted activities, or just time. But I AM BETTER!!!!! Also I have been taking GINKGO BILOBA for more, than a month. I am going to continue both SERC and GINKGO BILOBA.

Everybody – stay strong. Become experts in your illness – learn as much as possible including scientific papers. Do not trust your doctors blindly and religiously – they are not gods.

Love you all – short and long term dizzifighters.

Anna

Anna

Found this on a reputable webiste: "This drug (brand name Serc, chemical name betahistine), is advocated as a vestibular suppressant mainly for Meniere's disease".

I know that SERC has a different action than most other dizzy drugs but my hospital have told me to steer clear...I think if I'd done all the VRT in the world and knew for certain I would never recover, I would look into the drug route -but not yet...

Hope you are doing ok xx

Hi anna - just saw your other post...interesting...but surely taking the meds is masking the problem - when you come off them, it'll all come back? They say VRT works best if you have a strong dizzy reponse to the exercises and my neuroto has said therefore taking anything that dampens the symptoms will not achieve the best results re: VRT.

I find this interesting - really glad you are feeling better

xxx

well guys, after thinking that i have been improving, the nausea and unbelievable fatigue in the morning has come back..

had to nap the whole weekend!

:( SOB

deee

Anna, thanks for the reply. One question that keeps cropping up is: " what exactly is the difference between someone with MENIERE'S DISEASE, MENIERE'S SYNDROME, AND VESTIBULAR LABRYNTHITIS "? I was told that i had Meniere's syndrome and not Meniere's disease, but from what i have been able to read elsewhere i cannot see any difference between any of them? Also what exactly is involved in the VRT excercises? I realise that they are tailored to the individual but are they of any use to someone with Meniere's syndrome? once again many thanks

regards Brian

just a update for all u that dont know me...7 months ive had it and just have spacey feeling in head but its been that for like 4 months now...i do shake alot when im tired...but other than that i am back on the treadmill i go out drinking on the weekends...but im hurting on sundays and alittle on monday (but drinking doesnt prolong it it just makes u feel worse on the hangover) but as soon as this spacey head feeling goes away which should hopefully be away in the next like 2 or 3 months i should be 100 percent...7 months is along time i really havent heard of too many people going past 9 or 10 months on here..so im hoping i dont...LETS ALL PRAY,, THANKS

Unfortunately, even very reputable doctors and scientists can be mistaken. Our understanding of different things is changing constantly, especially undersatnding of mechanisms in such an enormoously complicated system as HUMAN BODY. I just want to beleive, that we can be helped some day by new advances in medical science.

Everybody, keep in touch.

Anna

Hello! I was just diagnosed with Acute Labyrinthitis an hour ago, and thought I would research what exactly is it on the web. BOY, was I surprised to find this website!! Thank you so much! I have been suffering for about 2 weeks now, with my symptoms only getting worse. I am a 35 year old female, and have had dizziness aggrevated with eye movement, and severe tingling, which started with my lips, and now affects my mouth/chin, shoots down to my fingertips and toes. I have constant dull, nagging headaches, and feel very disoriented and tired. My husband isn't understanding my fatigue, and isn't really dealing with it well...and I am trying to cope as best as possible, seeing as how I am the primary care-giver to our three girls. My doctor has been treating me for depression and anxiety already (tremendous stressors in my life for the past several years), and has prescribed Meclazine for me now. He says that I should feel better within the next 3-4 days, and should be completely better within a week. That's so NOT what I am reading here...and am a little concerned about the length of everyone's struggles. I have had severe sinus issues (including extensive sinus surgery) in the past, and am wondering if maybe I need to be acutely aware of recurring sinusitus. I was diagnosed by my GP, but had scheduled an appointment with my ENT of 5 years...but can't get in for another month. I have had recurring sore throats since October of 2004, and am wondering if this all ties in together. So many questions....don't want to loose all of your interest by babbling on..

Thanks for any help, and for this website!!

~Michelle~

BRIAN

I think Menieres syndrome is pretty much the same as Menieres but without proof in the tests if you get me. Menieres is an increase in inner ear fluid. Labyrinthitis/VN is damage or inflammation to the inner ear.

VN/Labs can be helped by VRT - Menieres cant as there is nothing to fix as such and it is an unstable condition with repeated attacks. So, menieres is controlled by a low salt diet mainly as well as medication such as SERC (betahistine).

Hope this helps a bit xx

Anna, you asked how Sam and I "the long term guys" were doing the other day. I'm coasting along and haven't had another severe attack of vertigo since early summer. Still a little dizzy but hey, that seems about 'normal' after all these years right??? ( I've had recurrent bouts of vertigo for the past 20 years )

I noticed you mention taking GINKGO BILOBA for the past month. Good for you as it's about the only medication I found that worked. It should be interesting to see if your improvement continues over time. I find it doesn't seem to PREVENT acute vertigo attacks but it certainly helps control the constantly dizzy feeling at other times. Without the GINKGO I'd be walking like a drunk and coliding with things!

But Anna, as much as I appreciate you; Why did you have to screw things up by taking SERC at the same time?! Now you can't isolate which of the two meds is actually responsible for your improvement! Maybe if you keep progressing over the next couple of weeks you could try dropping the serc and see if you continue to feel ok?

Brian, I see you're giving GINKGO a try too. Keep us posted please as to whatifany.

I think it would be of possibly great benefit if EVERYONE would give GINKGO a sort of homespun clinical trial for about 2 months. It would be really interesting to see what sort of actual results we might get.............

And Michelle; Yes, I for one suspect that all this sinus, throat, ears trouble is interrelated. I too, very often have a sore throat. I was also interested that you were getting 'tingling' in your mouth, tongue and extremities, accompanied by persistant headaches. It sounds like MIGRAINE possibly. Do you get any visual disturbances that precede the tingling and the headaches? I suffer "CLASSIC MIGRAINE" on top of the ear thing and have suspected for some time there is a link. One very important thing I found for controlling the migraine was a switch to a vegetarian diet. I went immediately from multiple yearly attacks to about once in every 2 or 3 years! Anyway, I hope that may be of some help and I'm sorry to hear about all the pressure you're under at the moment.

kind regards, Tom

Hi Michelle,

Your post is like so many others, and actually mine, when I was first diagnosed with "acute labyrinthitis" 4 months ago. I am so moved by it that I will now write this to help you a bit!

I believed my doctor that it was acute, and that the symptoms were sudden onset and would go away just as quickly.

I was then scared massively when I read that other people had got it for longer than a couple of weeks. I mean, it's such a terrible sensation and I couldn't imagine it going on for very long.

IF you indeed have an acute case of labyrinthitis (viral) then it will go away soon, in a matter of weeks. You will have no hearing loss and will return to normal soon. Put your life on hold for a few weeks while you recover and take a break.

IF you have bacterial labyrinthitis the antibiotics will clear it up the same as viral, however depending on the infection it may take a touch longer and you can be left with some hearing loss. If the doctor hasn't prescribed antibiotics then you probably don't have bacterial labryinthitis, just viral.

IF it doesn't clear up in 4-6 weeks, then you might have something else. 4-6 weeks is the 'average' recovery time for labryinthitis. however some people take longer for labyrinthitis, maybe 3 months to feel normal again. This sounds scary but don't worry. It's traumatic while you're getting used to it but you'll be fine, and you will recover soon.

However, if you still have symptoms after 3 months you may have vestibular neuritis - which is basically similar to labyrinthitis however the virus attacks the balance nerve itself, not the labyrinth in the inner ear. Alicia Molik the Aussie Tennis player got this recently, and had to stop tennis for a few months because if it. It's actually relatively common!

Because of the nature of nerves, the inflammation takes longer to subside and hence recovery takes longer. The infection causes the nerve to stop working at 100%, and can reduce it to any percentage depending on the infection. Because you have had quick diagnosis and treatment you should be fine - I only had 11% decrease in function, which took 4 months for me to recover from. I am now at 99% recovery by the way.

After the 3 month mark there are tests that can be done to determine the true nature of what you have. You will find out all of this in due course

Anyway, in the mean time, hang in there, and surround yourself with family, good friends, and most importantly, support from people that understand.

Also, check out this forum:

http://p084.ezboard.com/bdizzylounge

It's great for all your information, and gets updated more regularily.

Take care and welcome to the dizzy club. For a short while.

Oh and remember: MOST people never have this and never experience how difficult it makes life. When you recover, everything seems so easy it's laughable. I used to think walking straight was an achievement. Now recovered, I am amazed by the stuff I do whithout thinking twice. You will be fine, trust me Michelle! Just learn about it and you will understand and it will help you cope.

We are here to help.

Tom - also thinking of trying ginkgo...

What is ur diagnosis may I ask? Your acute attacks dont resemble labyrinthitis. Is it MAV (migraine associated vertigo) that you have? xx

Cop & Tom~

Thank you both SO much for such a warm welcome! Your information was most helpful. Makes me proud to be part of the "dizzy club"!

Tom~ One of my cousins made a comment about it being a migraine, also...but, I do not sense any eye issues (except for movement aggitation) or light sensitivity. I have been doing much better the last two days, though. Dull on-going headache and slight nausea...but, besides that, am feeling amazingly well! My friend was wonderful if the combination of the viral infection and me forgetting to take my Lexapro while I was on holiday, might have aggrevated the symptoms even more. Once I started back on my Lexapro after returning home, AND taking the Bonine that the Doc prescribed, I was feeling better. I just don't know which one benefitted my symptoms! Oh well....better, no matter HOW I got there, is excellent!!

I will keep visiting the posts!! :)

~M~

Hi there

I am so glad I found this site! I have had VL for five weeks now and getting really fed up of it - how all of you who have had it for months or longer have managed I can't imagine.

Am on my second course of betahistine at the moment - as soon as I ended the first course my symptoms got a lot worse again.

I am trying to keep active, have been going to work etc but has been tough and very tiring. Have had the past week off on leave and my partner thinks I should also take time off sick, but I am worried about 'giving in' to this. But also not sure I can cope with going back to work...

My GP says she will refer me to a neurologist if this vile thing doesn't clear up in another week or two, but I am wondering whether I should ask for an ENT referral instead?

I can just about cope with the dizziness (though toilet cubicles and supermarkets make me feel really weird), but I constantly feel sick and this is driving me mad - does anyone have any tips on what would help this.

Hope everyone is getting better...and much sympathy to all the long term sufferers out there.

Justine

Emma, you asked about my diagnosis. As you say, my symptoms could resemble those of migraine. I would agree if it weren't for the fact that I often get earaches (left specific) and several days of extreme vertigo will follow a chilling of that ear without fail. Swimming and cold/wind are things I have come to strictly avoid. The vertigo will follow inevitably about 1 day after a good chill!

It is possible of course that I might have both an ear problem and migraine (with aura) coincidentally......... I always wonder if there might be a causal connection there somewhere. I've not had an official clinical diagnosis. I lost faith in the possibility years ago when, much to my surprise I discovered that doctors really didn't seem to know much about iether condition. In this regard I want to thank you profoundly for helping enlighten myself and all the others. Also, glad to here you might try Ginkgo - hope it benefits you too!

Justine; I found GINGER to be very effective in controlling that 'sick feeling'. You can get the chewable candy type which is kind of fun, or if you find that not to your liking you can get it in pill form. ( GRAVOL sells it as an alternative to their usual motion sickness medicine and it really works.)

Tom

Thanks Tom, I will try that!

Justine

Like many of you, I thought, that I should not “give in” to this illness and stay “as active as possible”, and to push myself harder and harder by going to work full day, attending noisy and busy places, doing house work, etc.) As a result, I made myself significantly WORSE several times (actually, to the point of total disability). That was not the right approach!!! (at least, in my case). NONE OF THE BEST DOCTORS can tell you exactly how to behave. Many times, people with an inner ear disorder just need PLENTY OF REST. 33 years of dealing with this disorder have shown me, that I have to listen to my body and trust my instincts. NEVER PUSH yourself TOO HARD – to the point of being fatigued and exhausted. NEVER!!!! Tom – I agree with your self – diagnoses. Your problem is in your inner ears (left, because it hurts!). Your self – observations are very convincing. I think, that all people, who have EAR PAIN on top of dizziness are definitely suffering from an inner ear problem, or several overlapping inner ear problems.

Hugs, Anna

Tom - agree about doctors though I thankfully found a fanatastic one - the best in the Uk for dizzy stuff so now I always advise people with long term dizziness to see a Neurotologist and not an ENT.

You can get ear aches with migraine...in fact there are a plethora of ear symptoms associated with MAV.

Swimming makes me feel better - hides the motion - bizarre!!

xxx

Hi, all.

I was doing a search on some of my symptoms (rocking sensation, fatigue, tinnitus, etc.) and I came across your thread.

I was wondering if any of you think it's possible that you may have been exposed to some toxic chemicals, dusts, heavy metals some time before your lab symptoms began. Do any of you have amalgams (silver/mercury fillings in your teeth)?

The reason I ask is because my symptoms sound SO much like many of yours and I feel like they began right after I was unintentionally exposed to a fair amount of toxic dust.

Initially I had a sore throat, chills, extreme tiredness and chest pains. I also noticed a weird feeling in my head, like my brain was "swollen." The chest x-ray, CT Scan and bloodwork all came out normal. I requested a urine test from my doc just to rule out heavy metal toxicity. All metals were within normal levels except for mercury. I was told that it could have spiked from eating fish or shellfish right before taking the sample. I couldn't remember for sure if I had eaten shrimp or not. It had taken 3 weeks for the results to come back. So, I had a second test done. This one came back normal. This seemed suspicious to me so I had a third test done as well. The third test came back normal too.

During the week that I thought I had mercury poisoning (couldn't figure out how), I did a lot of research on the subject. Many of the symptoms that some of you talk about are symptoms of mercury toxicity as well. I especially wonder about those of you that have mentioned the metallic or "sour" taste in your mouths and also about Chad with the tremors. I will list the potential symptoms at the end of my post.

I have taken similar diagnostic tests that have been described by Cop for my ENT. I am waiting for the results of those tests. I'm curious to see if he suggests labs or vestibular neuritis. I just have a constant off-kilter feeling and feel very tired most of the time. I also experienced the feeling of falling through the bed when just dozing off to sleep that someone mentioned, but haven't had that for about a month or so. My symptoms started a little over 3 months ago. I found it VERY interesting what many of you said about the supermarket. I can't stand going into the grocery store or a bookstore. It just feels too overwhelming to me. I like being outside in the sun - that's when I notice my vision/balance problem the least.

I see that Bruno and Kevin stopped posting. I'm wondering how they are doing....

Let me know your thoughts after looking into this a bit.

Take a look at the symptoms listed:

CENTRAL NERVOUS SYSTEM

irritability anxiety/nervousness, often with difficulty in breathing restlessness exaggerated response to stimulation fearfulness emotional instability -lack of self control -fits of anger, with violent, irrational behavior loss of self confidence indecision shyness or timidity, being easily embarrassed loss of memory inability to concentrate lethargy/drowsiness insomnia mental depression, despondency withdrawal suicidal tendencies manic depression numbness and tingling of hands, feet, fingers, toes, or lips muscle weakness progressing to paralysis ataxia tremors/trembling of hands, feet, lips, eyelids or tongue incoordination

HEAD, NECK, ORAL CAVITY DISORDERS bleeding gums alveolar bone loss loosening of teeth excessive salivation foul breath metallic taste burning sensation, with tingling of lips, face tissue pigmentation (amalgam tattoo of gums) leukoplakia stomatitis (sores in the mouth) ulceration of gingiva, palate, tongue dizziness/acute, chronic vertigo ringing in the ears hearing difficulties speech and visual impairment -glaucoma -restricted, dim vision

SYSTEMIC EFFECTS chronic headaches allergies severe dermatitis unexplained reactivity thyroid disturbance subnormal body temperature cold, clammy skin, especially hands and feet excessive perspiration, w/frequent night sweats unexplained sensory symptoms, including pain unexplained numbness or burning sensations unexplained anemia -G-6-PD deficiency Chronic kidney disease -nephrotic syndrome -receiving renal dialysis -kidney infection adrenal disease general fatigue loss of appetite/with or without weight loss loss of weight hypoglycemia

Take Care

Emma - I am in the UK (London) and wondered if it would be possible to know the name of your neurotologist? (Though I am hoping I will be better in a couple of weeks and won't need to see one!)

Chelley - v interesting post there. I have a few of the symtoms you list and a couple of amalgams (although to be fair I think most people would have experience of one or two of the symtoms you list).

There is also a school of thought linking MS with amalgams.

Justine

I just want to say that i think CHAD and COP are extremely lucky is in they have had this for a very short time and they have been working whilst going through this...

Even EM & ANNA are working!

EM - did you friend who took stugeron for 8 months work as well - how come you said it almost made her recover ?? what could she manage to do at the beginning & at the end of the 8 months..would be interesting to know

Theres a lot that have had this for a lot longer, and a few of us that arent working whilst having this - myself included - i work from home..

COP / CHAD- did you take any medication whilst going through this?

I see a few posts of people coming back, saying that after a year they are 100% and just wanted to pop in to tell us all,... it seems to take longer for some people!!

Has anyone taken any form of steriods (not the gym stuff)with this? My friend was ill with something else for a few months and took steriods to up his system

deee

Thanks Anna and Em for your comments.

I'm digging a bit deeper over the MAV possibility. I wish I had access to your Neurotologist in England Em. ( I live on the west coast of Canada. -more exactly, OFF the west coast of Canada on a small island. Not a lot of specialists ............) It's probably about time that I subjected my head to some professional scrutiny again. It's been about 15 years since my last unsatisfactory encounters over the problem and I confess to having become rather resigned to my fate.

However, I'll let you all know if something of relevance seems to turn up regarding the migraine connection.

Interesting about the amalgams. I too have Some of the symptoms but others don't seem to be there at all. - Lots of Mercury in my mouth tho! If I ever felt I could come up with the cash I'd have them all done over just to be sure.......

Tom

Deee - bear in mind I havent worked for 2 years!! And I am not doing contract work so career v much on hold...

Have a look at my site labyrinthitis.org.uk and read Ilia's story - but she basically thought the stugeron made her dizzy free after a while but she fell pregnant and it all came back which shows the stugeron merely masks and not cures.

Justine - dont like to give details out over here but do email me at my site and will give you the info - perfect for you as the hospital's in london...

xxx

Tom - have you looked at www.vestibular.org - they have a list of specialists all over the world on their site...

xxx

My other post doesnt seem to have appeared? I just said...I didnt work for 2 years and now I only do part time. Also, Justine - email me at my address on www.labyrinthitis.org.uk if you want the neurotologist details.

xxx

Thanks Em. They listed 1 possibility in the Vancouver General Hospital Neuro-Otology Unit. I'll check into it.

Really appreciate it. You are a font of care and info! Tom

In My opinion, The Specialists on Vestibular.org are not necessarily good. They are just doctors/therapists who contacted veda to get their name on it. Well I guess its a good resource just to find someone

Sam - I do agree - but I think VEDA do check them out...

xx

Hi, everybody

Just an update on my situation. I am continuing to improve VERY SLOWLY just staying at home out of work. I am not going to any noisy places. I am not watching TV (too loud for me!)and working on the computer only for a short periods of time.

I am on a short term disability (up to 6 months in our company). I am doing much better in respect to noise tolerence and balance wise. It is the 22nd month of the 5th bout of the inner ear disorder in my life (I had the first one 33 years ago when I was only 20). I have been on a short term disability already during this 5 th bout (in 2004). I was not well at all when I started to work in September 2004(unsteadiness, very bad headahes, fatigue and terrible noise sensitivity - I wore Bose noise cancelling earphones all the time!). I was somewhat improving in the beginning of 2005, but in May 2005 I started feeling worse and worse almost collapsed several times at work. So, I was forced to go to a short term disability again. This time my bosses started talking about me applying for a long term disability which is payed by an insurance company. It is a great pity to do, because I like my job very much! Nevertheless, I decided, that I SHOULD NOT jeopardize my health. I will never recover if I continue to work hard being unhealthy.... This disease is VERY CRUEL (at least, in my case!)

I read all the posts here.

You are really strong people.

Hugs, Anna

Hi All

Just spent 3 hours reading all your information on this website found it very useful. I am amazed so many other people have lab. I took symptons of this in July after been on holiday by plane, don't know if lab. can be brought on by plane journey, but life has been awful ever since, the feeling of heavy pressure in your head and constantly feeling you are on a boat and the ground feels it is coming up to meet you. I am being sent to the hospital for them to check it out on Tuesday, but after reading all your comments I am sure it is lab. so many of your symptons relate to mine. I just wish life could get back to normal, each night when I go to sleep I wish when I wake in the morning it will be all gone. I feel really tired most days i thought this may be due to being on a high dose of stemetil,which is great for the sickness but does not help the feeling of falling over. I am so glad I found this website to know other people have the same symptoms. I have been thinking there was something more seriously wrong with me. I feel slightly better than I did last week and just hope it will eventually go away. I thought once it would go away it would be gone for good, but reading all your comments it saddens me to see there is a good chance it will come back.

Speak to you all again soon and thank you all for the information I have found from this website tonight.

Audrey. Glasgow

Hello again. I appreciate the fact that you all post here as I am in need of some advice.

My ENT said that due to an abnormal ENG he believes that my "dizziness" is being caused by my inner ear. He is suggesting physical therapy or medication called betahistine. Have any of you tried betahistine? Good or bad experiences?

Thank you for your support.

P.S. - My hair mercury test came back and it seems to be a fairly low amount (I'll be calling the lab to verify that.) But that still means that I've most likely been exposed to some form of it within the last few months.

Thoughts are with all of you, Chelley

Chelley - Betahistine (Serc) is used in more than 70 countries for dizziness and vertigo symptomatic treatment. It helped some people, whom I know personally. It is not FDA approved in the United States. So, doctors here (in the USA) just simply and lightheartedly say, that "there is no any cure, or treatment for your dizziness". It is always extremely depressive to hear this. I have heard this sentence many times during last 33 years from different doctors - good and bad ones - in Russia and in the USA. I would rather prefer to be prescribed betahistine, than to hear again and again those terrible words: "there is no any cure, or treatment for your dizziness". I do not know what kind of physical therapy your doctor meant, but just be careful with moving your head too fast, or with bending over - it is inflammation in your inner ear (your head, actually!)

Anna

Chelley - physical therapy is the way to go - medication such as betahistine only dampens down the faulty signals, masking the problem. Am surprised your specialist even mentioned taking the medication.

AUDREY - your prob sounds more like MDDs - Mal de debarquement. It is not v common for labs to start after a plane journey with no symptoms beforehand.

xxx

Chelley - moving around in the case of an inner ear infection or labyrinthitis is a good thing so the physical therapy will help - it'll be VRT - vestibular rehab Therapy. I would, as I said before but the post hasnt appeared - check with your specialist that its ok to take serc whilst doing vrt as most specialists advise against it. As masking the symptoms can stop the therapy working xx

Anna,

Thank you for your response. My doctor has prescribed this "betahistine" and there is a local pharmacist who can make it for me. It sounds like it is VERY new here. Have you requested this prescription from your doctor recently? I am nervous about taking something that isn't FDA approved. I'm not sure what to do. I may look for another doctor to sit down with and talk about my options. Another opinion is always good. My husband is eager for me to try the medication as he desparately wants something to make me feel better. Did the people that you know personally (who benefited from this) take this medication just for a short time or are they on it forever now? Thanks so much, Chelley

Em - can you tell me what mal de debarquement is? I have not heard of this my doctor diagnosed me with labs. after my holidays then changed to acute vertigo now awaiting hospital assesment on Tuesday.

Audrey

Hi. If anyone has Labyrinthitis or knows someone who has; and that lives in London I am setting up a very informal support group. As far as im aware there isnt one at present.

It will consist of meetings, probably at the weekend, in light open spaces; and the main purpose of it is to meet other people with the same problems and to raise positivity; as we know this has a massive effect on our recovery.

In the first instance send me an email and ill give you some more info then!

Thanks

Nik / Labyrinthitis Group

Chelley - I am on betahistine and it has dampened down the dizziness, but I think that emma is probably right as if I stop taking it the symptoms get worse again - ie it is just masking them.

almost 8 months..and just spacey head feeling and thats it...i dont think this ever going away??????

Does anyone else feel light headed all the time...like you are about to faint? I keep having this feeling so I am scared to go out anywhere by myself. It also is always worse at night....and I have a rapid heart beat...most probably from being anxious.

Lauren-- yeah sometimes i have that - mostly when anxious,

How are u?? how long has it been for you now (labs)

As for meds -- i am taking stugeron - heard of betahistine, and its similar i think,

HERES what i believe:::

I dont think that taking these meds STOPS your recovery & compensation,

YES, it might take longer for you to recover whilst taking these BUT doctors ( 3 doctors i have seen) prescribe them for 1 reason -- to have a better quality of life whilst going through this..

would you rather have a terrible few months, or a not-so-terrible few more months?

What i do is only take 2 a day - most prescribe 3 a day - therefore i am not on as much medication and my body can compensate some of the times too...

Its also a known fact, that when you stop taking them you DONT stop altogether, you WIND down, ie if you were taking 3 a day -- and are much better -- then wind down to two a day for a long period of time --- then 1 for a long period of time.. so you learn to compensate whilst coming off them..

Thats just my opinion,

deee xxxxxx

Anxiety/Depression From This Illness

Just wanted to chime in and let you guys know what I think has helped tremendously for with the anxiety and depression that accompanies this monster.

Exercise... I know many have heard this before, but I really think it helps alot. I get on the life cycle about 20-25 minutes 4x a week and it has really improved my mood. At first it was difficult, and I really felt like giving up, but after a few weeks, I felt much much much better. I stopped running as my VR Therapist told me not to as the bouncing can make you more dizzy.

I want to thank all of you that responded to my question regarding therapy vs. medication. I'm still torn, but now feel like I'm leaning more in the direction of therapy. It sounds like the medication doesn't necessarily "cure" or "fix" the problem, just makes you feel better by masking the symptoms. This is a tough decision. I'll let you know what course I take and how I'm doing. I believe that I need to talk to a doctor about anxiety and depression as well due to dealing with this. :) And I can say that I do feel better mood-wise after exercising even though it seems draining while I'm doing it. Take care, Chelley

It has been about 5 months for me now and honestly I felt like I was getting better and I was slowly starting to do things again...and now I feel worse again. Ears feel like they are in pain and feeling faint and dizzy all the time.....w/ panic attacks of rapid heart beat and not being able to breathe. Before I felt totally confident that it was going to go away and now it has turned into extreme panic and being scared more than anything from feeling this way ALL THE TIME. ugh Also I have been excercising usually everyday....and jogging included (didn't know that it was bad) Excercise helps when I am doing it....but everything comes back after. I guess I am just a little freaked out by it all now...I am going to try and go to the doctor's again tomorrow. Thanx for the advice....

NIK - if you manage to set one up do email me at my site labyrinthitis.org.uk as I can publicise it there.....

AUDREY - have a look for mal de debarquement on google... Quite tricky to explain on here.

xxx

Hi, everybody More information about betahistine (SERC): This abstract is taken from the following web page: ------------http://www.menieres.org/martin.htm “The local U.S. doctors can have little to do with SERC as this drug is not yet approved by the FDA. Doctors are very reluctant to say much about it or perhaps don't even know about it. Most of us who use it and have found success start out by taking 16 mg. 3 times per day until we are free of the vertigo, etc. You will generally not improve the tinnitus or hearing loss, but all the other symptoms will vanish (hopefully). I had to take this heavy dosage for nearly 5 weeks before I was entirely clear of the symptoms, but many find relief in a few days. Then I tapered back on the dosage. I now take 2 at breakfast, 1 at lunch, and 1 at dinner -- with food. I have a close friend here at the University of Texas who is a chemistry professor -- I took the pharmacy disclosure sheet to him to ask his advice. He said that the chemical makeup of SERC is as near as possible to our own body substance known as histamine and that it would take a ton of it to be harmful. The disclosure sheet does state that you shouldn't take antihistamine and SERC as they are opposite in reaction. Histamine is a natural blood vessel dilator while antihistamine tends to constrict blood vessels. To secure SERC [in the U.S.] today, one must either see a Canadian physician and be under his/her care to secure a prescription from a [Canadian] pharmacy, or go to Mexico and buy it as an over-the-counter drug. I have contacted the distributor of SERC, located in a suburb of Chicago. They have informed me that their company has been licensed to build a factory for production here in the [United] States. The company that makes it is ready to start phase 3 of testing for the USA and I have been told that this is testing on people (don't know this for a fact). Someday it will be available here in the States (if we can live that long). “ --------------- I, personally, know an elderly woman in Russia (my mother’s friend) who has been taking betahistine for about a year and she claims, that it makes her feeling much better. I know at least two people in Israel, who also claim, that this drug make their dizziness subside. All those people have vague diagnosis: “inner ear disorder”.

I started taking betahistine about approximately two weeks ago. I had been doing better and better before I started taking it. And my improvement is still continuing. I really do not know if the improvement should be attributed to betahistine, or just TIME and PLENTY OF REST.

Emma – I know very well that current view of specialists, that any anti-vertigenious drug may slow down compensation process in the brain. It was NOT PROVED IN RESPECT TO BETAHISTINE, though. To my opinion, it is worse trying for those who feel terribly dizzy, just in order to be more “normal” and not to be as sick as a dog all the time.

Sam - jogging and bouncing make me horrible, but slow walking is SO GOOD!

Everybody, stay strong. Post here.

Hugs, Anna

Anna - get your point completely - I just prefer to know the current state of my symptoms and try VRT which is for (hopefully) long term elimination of dizziness. Serc may not delay compensation but it is just masking the dizziness so once you take it, I guess you always have to take it... V much each to their own but I dont like taking medication and also am all for VRT.

xxx

Hi Lauren,

Why is jogging bad for it? I've been jogging and not experiencing any real adverse side effects. I have vestibular neuritis - that what you've got?

COP - each case is v individual and also...theoretically, the worse you feel after an exercise (within limits) the better the VRT - so jogging is all good!

xxx

I have been told by one doc that I have labs and one doc menieres.....I choose to think that i have labs though. I have come to find out that doctors can really only guess. Good to know that jogging isn't bad for everyone....it never bothered me. Excercise seems to be the only thing that makes me feel better....maybe b/c it takes my mind off of things. I still feel weird when I go out of the house though.....don't know how to shake that off....and driving is still hard too....so I try not to. Is everyone else able to go out to restaurants, shopping driving etc?

Hello Everyone, I am new to this site and I have had Labrynthtis for since July 27 of this year. None of my physicians have helped me. I did visit a chiropractor and he helped me with the heavy head feeling. I was amazed at the difference in the way I felt after the treatment. I was beginning to feel a little bit better a week ago but after I walked down a flight of steps, my dizziness increased and my head feels heavy again. Has anyone had this experience with stairs?

Lauren, Xianna - restaurants, shopping malls, driving, elevators, stairs, noises, telephones, my own talking - all these things make me feel dizzy and nauseated. It is getting better with time, though. Only this progress is extremely slow, with UPS and DOWNS. This is how this illness affects our bodies and minds - it is really cruel.

Doctors are really not a big help on the current state of medical science. They only guess. Frankly speaking, I trust much more my own research, observations, feelings, and instincts. Emma - probably, you are in minority being lucky to have good neurotologist and VRT specialist. I respect your firm intention to try “all VRT’s in the world” to get rid of your symptoms forever. Although, I have some doubts, that it is a way to go... (don't be angry with me!) Definitely, you SHOULD have your own opinion, because everyone’s situation is DIFFIRENT.

Stay strong.

Hugs, Anna

Hi Labbies,

Anna, you are amazing! I think it may be time for you to get another PHD in pharmacology and ear related problems!

I am still 100 % recovered. Everyone, be patient - this will pass.

Be strong - and don't let this virus get you down.

hi all, i was diagnosed with labs over 5 months ago by my ENT specialist, and, like im sure of many of you, have ok days and bad days. i have been doing the cc exercises whilst waiting for VRT, but i do still get violent spinning attacks that really do knock me back. I explained these attacks to my ENT specialist, and he told me that he no longer thought that i had labs. He has prescribed me several forms of medication, like Serc, but i am still doubtful. Its not that i dont trust my ENT specialist, but i identified so much with many of your stories that i still think that it is labs. Could i have your feedback please take care, Lamb xxx

Hi All

My hospital consultant has now confirmed that I have Acute Labyrinthitis she has now given me Serc plus stemetil to take which I have been taken now for the past ten days. I have noticed a big improvement the sickness is now gone and my feeling of following over is not quite as bad. The ground can now still feel spongy, but not all the time like before.

I just hope each day it will continue to get better and I will be able to return to work soon. At the moment I still feel really tired some days and other days are fine, do others feel like this?

My consultant says I have to get a CT scan, does this normally happen if you have been told you have got labs?

Speak to you all soon

Audrey

im so dizzy i cant see straight..its the swimming kind not true vertigo where the room spins. i was totally cured by going to vestibular therapy then boom a decompensation came...yes you can decompensate...so we must keep exercises up for life. god please help...its hell all over again.

Hey lamb,

I think definately try to get a referral to see neuro-otologist as they do way more testing and know a lot more than the ENT..

Im still waiting for my referal but things are better than say, a month ago..

I think it all just takes time

good days i can go to the mall for a few hours / or go to a movie and i feel 90% , bad days its worse but soon there will be more good than bad

Deee

Robin.......how long did it take before you felt fully recovered? I thought that I was recovering before....but then it got bad again. Not being able to drive is the worse...b/c Dallas,Tx....everything is so spread out. :(

Oh wow... will I ever get better! I started with on and off dizziness and then three months ago bam, chronic dizziness. I have been so stressed out about this life change that I have to go on prozac to help with my anxiety! I was never an anxious person but this problem has brought out the worst in me:( I have been doing my physical theraphy for about 1 month and I feel that it is helping with my balance. I am only in my 20's and my fear is that this is a permanent situation! I pray every day that this is not the case! It has really put a strain on my life. I am so upset that I can't even attend functions... tonight I have to have him go alone to his award ceramony becasue I feel yucky!:( If I dont get better I will for sure have to let him go so that 2 people wont have to suffer from Vestibular Neuritis! Sorry for my gloom.. just really down!

-Marissa

hi all, thanks dee, i will look into it.

i was wondering if anyone still has major spinning attacks. i know people had them at the beginnning of labs, but i am still having quite frequent attacks 5 months down the line, which is why my ENT now thinks that it could be menieres.

take care, lamb

Was wondering if anyone knew the answer to this.

If you drink, people always say they pay for it the next few days or something of that sort...

Would this be true for Benzos, such as valium, xanax etc.... They act the same as a vest suppressant dont they, so if you come off of them, wouldnt you pay for it the following days?

Sam

ITS BEEN 8 months now for me...never had the true spinning just have the constant spacey head feeling 24 hours a day 7 days a week for 8 months...had tests done specialist said right ear is damaged...i am about 80 percent except when i drink im hurting for like a day or two after.....it sucks im used to it by now but it still sucks and i want it to go away so bad so im back to normal......it cant stay much longer....i hope not pray for me please...

Anna: Thank you for your response. How long does it take you to recover from using stairs, elevators, etc.? It made me feel so bad. It was as though I was starting all over again. I have made very little progress since that time. Do you think that continuing to do this type of activity makes things better or worse? Should they be avoided, if possible? I am so tired of being afraid of doing things I normally did in the past. If anyone else has experience with this, please share your thoughts with me.

Hi, labbies,

I would have posted more frequently, and I would like to comment ALL of the posts. Actually, I have many thoughts and opinions on different questions. The problem is, that I HAVE TO restrict my working on the computer for 15-20 minutes a day. Otherwise, I get dizzy and nauseated. Computers are real triggers of dizziness and headaches for me (and many people with inner ear disoredres!).

Robin - thank you for posting the good news, that you are still 100% normal. I hope, that you will stay like this forever! Everybody pay attention to Robin's success story. As far as I remember, it took her about 9-12 months to get rid of her symptoms completely. So, it is possible!!!! We all have hope!!!

Marissa - (you've got a beautiful name!) As research show, young people (like you) have shorter recovery time, than older ones. Young age works in you favour. Now my opinion - as far as your boyfriend - you have to be very honest with him and explain to him your feelings with regards to your illness (anger, depression, fears, gloominess - everything!). It is not your weakness, that you feel this way ! It is your illness, that brings all these feelings. You are not able to lead a normal life right now and you are going through very rough time now. Actually it is necessary, that you COMPLAIN and EXPLAIN your symptoms and restrictions to somebody. It is necessary to seek SUPPORT and UNDERSTANDING from somebody who CARES about you. Mayby, this "somebody" is your boyfriend, and maybe he would be happy to HELP you and BE WITH YOU during this horrible time. If he is not ready for this - maybe, it is better to say him "farewell"... Excuse me, if I am too straightforward. Remember - "A friend in need is a friend indeed"...

Audrey - I was sent for two CT scans in addition to wto MRI's during past two years. Neither of them can show INFLAMMATION inside the inner ear. All of mine were absolutely normal. But doctors are very quick to send you to all unnecessary tests, mostly because, they simply do not know what to do with you and you damned dizziness....

AG - Sorry, that you have this "down" in your illness after being almost OK. Unfortunately, this cruel disorder has this tendency. A good thing is, that it ALWAYS get better at some point. Just hold on....

Lamb - have you ever seen any connection between your sugar, or salt intake and spinning attacks? Sometimes, people with Meniere's can see it right away. So, they can significantly reduce their attacks and dizziness in between by diet.

Hugs, Anna

anna- thanks so much for replying, having not been out the house for a long time im feeling pretty isolated. i haven't really noticed my salt intake but i will start monitoring it.

i have been taking serc for five days now, but find no improvement-does it just need time?do you still have spinning attacks, because i get them quite frequently whilst still feeling unbalanced inbetween.

thanks loads, lamb x

Hey Chad,

I'm at 5.5 months mate, and I'm feeling 95-99% I suppose - head is a lot clearer than before

have you had any days that you have felt clear? Even if you're having worse days than others, that means you'll get there man. I really believe you'll start feeling clearer soon.

keep up the exercise and diet, that's what made me recover heaps better

-Cop.

THANKS ROBIN its been 8 months for me im hoping 9-12 looks good for me to clear....u said it took about 9-12 months i hope its that way for me to.....i know it will go away its been 8 months and its frustrating.....

Chad,

Just wanted to ask you if you were doing any VRT? They say that helps if there is residual dizziness left from labs.....

no VRT....but i run on the treadmill work 8 hour days...i stay busy......i dont know??

Chad & Cop are real lucky!

They are working whilst going through this- or at least they are better enough to do that!

a lot of us are not, and are at home!

i can say though that i am not 24/7 dizzy and dont feel it too much when i am at home, just the tired lethargy feeling,

and when i go out to shops, movies ect then i feel it more , but cant do 8 hour work days

deee

Chad whereabouts do you live man? In Sydney?

hey just a quick question...anyone who has been on serc how long did you have to take it for until you began to feel better and at what dose?

take care lamb xxx

no cop im in pennsylvania,,,,united states

Does anyone know if lipoflavonoid will help with the recovery process? Is it as effective as Ginko Biloba? I would welcome any thoughts on this.

Xianna

Hi Lamb,

I was on stemetol (not sure of the spelling) but it knocked me out too much so I changed to serc. I still take serc if I'm having a v bad day or when flying, but I try to avoid it the rest of the time as it makes me too drowsy and the brain fog can be bad enough as it is! Also I read that taking these medications can hinder the compensation progress. Though as I've been told both my ears are affected I'm not sure if I can still compensate or not 7 months into it ...

Sue

Girls - do ALL of you have worse symptoms at that time of the month? IF SO what symptoms were worse??

I am trying to see a pattern here - last month my mom came to visit and i was worse IE very tired, drained, needed to rest a lot more & it was at THAT time of the month..

PS Sue, are you back at work 7 months into it/ Is there any sign of improvement?

deee

Hi everyone! I am a relative newcomer to Lab. I've had it for 7 weeks now and my husband has had it since the middle of July although he still works...just pops a Serc in the morning and carries on! Does anyone know if I could have caught the virus from him? I take Serc (8 mg)as needed but try my hardest not to, so that my brain can compensate. I've never had the big spins or vertigo....just feeling off balance and fuzzy with slight tinnitus. Also, another question for anyone out there....I can feel lousy and off for a few days and then have 4 or 5 days where I'm 98% perfect. What makes it come back? Just when you think you're getting over it and feeling excited about it, you wake up feeling stinky and off again! I'd appreciate any thoughts. This board is just great! Kind of keeps you sane when you're feeling like you're the only one who feels lousy. Wendy

I have been taking both lipoflavonoid (vitamins) AND Ginkgo Biloba (herb) on a regular basis for about four months now and I am still improving. Of course, it maybe just time and plenty of rest, and not working. Some people really see some improvements with these vitamins and herbs. My idea behind it: those things would not hurt you in any case! As for SERC (betahistine): for about a month I have been taking 16 mg (8x2) a day, and switched to 8 mg a day. As I said I am still improving (VERY SLOWLY, with UPs and DOWNs). I really do not know - should apply this improvement to SERC, or to GiNKGO BILOBA, or to just TIME, PATIENCE and PLENTY of REST. My thought - ALL OF THE ABOVE.

Deee – Now I am not young enough to observe my symptoms during THAT time. But I remember very well, that earlier in my life monthly periods during bouts of the inner ear disorder exhausted me completely. I was so tired and fatigue, that the only thing I could do was to lie down and to be left alone. In happy dizzy free years of my life I hardly noticed my cycles.

Wendy – I have never heard from people and never read in literature, about labs being contagious… Maybe, just a cruel coincidence in your family.

Anna

does anyone else have this trouble...the last few weeks after i lift stuff and do stuff my legs are like super weak and i have to sit down for awhile or if i do something with my arms for awhile they start shaking like real tired,,,,anyone else????

Hi everyone! I've just been to the bank (for about 15 minutes driving and waiting in line!) by myself and I was so-o-o nervous! I made myself breathe through it but I was feeling very surreal!?!?! I almost ran back out to my car from the mall but, I made it though. What makes us feel so nervous and weird in public places? Yesterday, I was in the same mall for the same amount of time and was fine. This is really a day by day thing. Do you all just make plans to do things and actually do them regardless of how you feel that day or do you try to do things only if you feel okay. I'm trying to do them regardless and maybe that's what's making the symptoms worse at that time. Could you let me know how you cope? Thanks! Wendy

Okay...I know that I posted a while ago that I thought that I was almost there and better....but now I feel it all just getting worse.....so much so that I went home to my parents for a while just to keep going to doctor's appointments till I can find something to help. My dad has a hollistic doctor who took a blood test to see if it was Lyme disease b/c many of the symptoms are the same (I am still waiting for results)....but said that my white blood cell count was very high which meant that it was trying to fight off a virus. She wants to give me anit-viral medicine. Has anyone ever heard of this.....and has anyone had it work? I need relief soooo bad. I have one doc who has been trying the epley manuver on me....but it is just not working. I have never been so depressed or had such a hard time as I have these past 6 months. Please please let the end come soon. Has anyone seen the end......how do you know when you are getting near? I just need some hope bad!!!

Chad,

Mate you could just be stressed and or tired, or just have a virus that makes that happen. Viruses can have no visible symptoms but can make some activities feel different.

Give it a bit and avoid those activities for a while. You lift weights normally don't you?

Sorry to be so negative on my last post....I guess that I just panic sometimes. I know that we will all get better soon enough and to just try and stay positive. So the anti-viral med is called alaverex. I will get it on Monday and of course let you all know if it works! Take care and bless everyone. -L

Hi everyone,

Dee - Yes I still have dizzy and have off balance feelings at 'that time of the month'. I think this is to do with water retention and fluid building up in the inner ear causing symptoms to reappear. I have had labs for coming up to a year now - started last November with dizziness after I had a bad virus and lost my voice for a while, the worst was over in two weeks,then I just had on/off mild dizziness for a few months which I coped with well. Then in April I caught another virus and the Labs came back big style, I ended up being off work for 5 months and was in a real state with anxiety and dizziness, though I haven't fallen over yet!

Wendy, now I am about 95% recovered, what brings it back for me is as I have just said 'time of the month' and when I have done too much, that makes me feel really tired. I find that I now can't do as much as I used to before I was ill. I have been back at work for a month and feel as if I am doing well though it is very tiring. I work in a garden centre so the work is quite physical and we are not allowed to sit down. It is a challenge for fit and healthy young people, so at 44 and recovering from an illness I am quite proud of myself. All my feelings of anxiety are gone now and I did feel them getting less and less as I got better and better. However, I still feel that I cannot go to the hairdressers, as I have had a couple of bad attacks in there. This might be physcological, I don't know and I still have a problem with restaurants and cafes. Wendy, I think it's maybe over stimulation of the senses, I don't know but this is the way I feel at times, quite overwhelmed in public places. This has got much better as the symptoms have subsided. I can now do the shopping in very busy places. I think, in restaurants and salons I have time to think about the illness and this is why I feel strange. When my mind is occupied I feel ok! I am of course, dreading the winter with all the viruses about but I have been building myself up with good food and vitamins so hopefully my body will cope better if I do catch another virus and the Labs won't return.

Take care everyone

SANDIE x

Sandie: Way to go on being 95% better!!!!! Glad to hear you have been back to work and such a physical job at that! I haven't been working up to this point where I'm at now. I work part time with kids in the immunization programs at the schools. Let's just say I can't imagine running after them and keeping crowd control after they've had their needles!!! Luckily I have other workmates who can take my shifts. I'll be going back in the spring....fingers crossed!!! I really try hard not to take the Serc I've been prescribed as I want to do this so my brain will compensate. I don't get dizzy....just imbalance, feeling off, mush-head and buzzing in my ears and of course, when I get anxious when I'm out alone, the symptoms are a little worse. Sandie, my thing that bugs me to no end is the shower!!!! I either have to sit down or have my husband hold the shower curtain back so that I can see out! I'm sure this is psychological as I never had this feeling before. Whatever causes it sure makes it seem "life threatening"! How silly! I'm having more and more outings that are not bothering me as much....last Monday a Paul McCartney concert that didn't bother me at all, especially sitting amongst 24,000 people! A casino outing yesterday that was a real fun time and no symptoms! Today though, I was very tired and noticed the off balance feeling while at the grocery store. When there's more better times between the "not so good times", does this mean I'm getting better? I sure hope so.

Also, I had BPPV 3 years ago but only for a week. Does anyone have any thoughts or experience of having lab and BPPV at the same time? I've been doing the Epley exercises for weeks and weeks but I still feel the same. I'm seeing the same Neurologist this week who treated me for BPPV 3 years ago. Maybe he'll be able to help.

Take care, Wendy X

Hello fellow Labbies,

We have just survived 8 solid days of rain here in New Jersey and although an awful lot of the state is flooded, including my basement, I am fine. No dizzies, not "weird" feeling and I was at the beach part of the time. I still feel great and almost all of you will too, as your virus takes it's course, and ends. Everyone, find the strength in yourself to face the oncoming holiday season, find the "positive" mode in yourselves (it's in there somewhere" and focus on 100% recovery. To those Jewish folks - Happy New Year, now.

My basement is down from 6 inches of water to 2 inches and a plumber came to our house at 12:00 midnight last night and stayed until 5:00 pm today. Now that's a miracle!!!

Dear robin,

Many thanks for your words of encouragement! saying "as your virus takes it's course, and ends"

I hope to god that happens for all of us and that we all fully recover.

I am definately going to be in the holiday spirit end of this year, i will be going home for Christmas for 3 weeks, 12 hour plane ride and all! and spending time with the people that matter in my life!

Wendy, --

This illness is a bit confusing as I have also had "outings" when i feel fine - and then days doing something small like grocery shopping and i feel tired & offbalance.

Crazy huh?

deee xxx

Wendy - yes for me the 'shower feelings' were terrible. I too had to have one of the kids in the early days to stay outside in case something happened to me! This is all part of the anxiety. I heard that nearly everyone who suffers from Labs for a while suffers from anxiety as some of the nerves in or close to the inner ear control your anxiety levels. Have a look at www.labyrinthitis.org.uk, a site written by two british girls who have suffered from Labs for a few years. It is really good and informative, list all the symptoms etc. Yes I think that the more good days you have signals an end to the virus. It was that way for me, you kinda don't notice it at first, it creeps up on you and you think 'hey, I haven't been too bad at all for the last few days!'. I would say I am almost back to normal, what I feel now I can cope with and I do what I want to do. Life goes on! It is slow but you do get better eventually and let's face it although it doesn't feel like it at the time there are worse things that can happen. Keep smiling and don't let it get you down.

SANDIE

Hi, everybody

Lauren – all of us, dizzy people, panic quite frequently. But we have a good reason for that, don’t we? Do not even apologize for being scared or depressed – it is a big part of our illness.

Wendy – I have labs and BPPV. Epley maneuver makes me WORSE indeed in a long run – new (far worse!) symptoms appear in addition to existing ones. Other exercises (Brandt - Daroff exercises) were a NIGHTMARE - my subjective feeling was, that I smashed, or cracked my poor head into small buzzing and agonizing pieces. I was literally dying with pain (ears, forehead, back of my head – everything, horrible noise sensitivity) and completely bedridden for 3-4 months. It happened already twice in my life. Needless to say, that I am not going to try those NEVER-EVER AGAIN!!!!

Robin – Happy for you!

Chad – you certainly get yourself overly exhausted. Quit for awhile activities, that make you very tired (it means make you trembling!).

Emma – where are you, my friend? You quit watching this site? How are you?

I am applying for a long term disability. My bosses assured me, that I will be very welcome to come back to work whenever I am able to do so. I love my work (engineer and researcher in material sciences), so it was a great relief to know, that people appreciate your achievements. By the way, I just received my first American patent! (I had 12 patents back in Russia). Frankly speaking, I would rather invent something to cure all of us, labs victims. Let’s hope, that somebody will do it some day….

Just a piece of advice for everybody. For many months I have been taking shower sitting on a plastic shower chair. I feel much less dizzy and disoriented while sitting in the shower!!!

Anna

Hi Anna - bless u - am here - dont look much as sometimes I just need a break from the condition...Hope you are doing ok...im plodding!!!

Hugs to you xxx

Anna, Emma, anyone,

Do you know if diuretics help with Labs? My doctor can't quite decide which one I have, Labs or Menieres. Does anyone know the distinct differences between the two? They seem to have similar symptoms.

Xianna

Hi everyone!

Anna: Thanks for the tip about the chair in the shower...I'm going to buy one!

This question is for everyone: Does anyone have any awful stories about having the ENG (Vestibular) test done? I just had it done yesterday and I am WORSE than at the beginning of this bout of Lab/BPPV!!!! The actual test wasn't all that bad...just some nausea when they put the water in my ears. But, as the day went on I kept feeling worse! Now I have the slight dizziness (not vertigo) and all the rest of the symptoms. I won't list them....you know them all. I can't believe it!! And I'm so discouraged and frustrated. I went to my neurologist this past Friday and he performed the Hallpike on me with negative results....just said maybe there are still some deposits that haven't gone back in yet. I told him I had the ENG test booked and he said that I really didn't need to go as they measure the same thing...eye movement of which I didn't have any "flipping" while he did the test. Then in the next breath he said I might as well go since I already had the appointment booked. Obviously, I shouldn't have gone, looking back now. So here I go again, basically starting over from the same point (or worse) 9 weeks ago! Sorry for blabbing on but I guess sometimes you just need to vent!!! I hope you all had better experiences with the ENG test, but I'd love hear your experiences. Please take care, Wendy X

Hi, everyone

Xianna - many inner ear disorders just overlap in one person. That is why some doctors prefer a term "inner ear disorder" instead of Labs, or Meniere's, or Endolyphatic hidrops, or Perilymph fistula, or BPPV. Your doctor, even if he, or she is a good one can read tons of medical literature with explaining the symptoms of each condition (you can read them yourself on-line!!!) and watch many patients with the main complain "dizziness and (or) vertigo" , but he, or she will be still puzzled by your partucular diagnosis. I do not blame doctors anymore - our inner ear, and of course, our brain is TOO complicated.... Somehow, I think, that this "overlapping" happens in most people with the main complain "dizziness and (or) vertigo".

Not much of a help from my post, huh? Water pill can help people, if they have signs of Menere's or Endolymphtic hydrops. In any case - water pills are absolutely harmless, so why not give them a try?

Hugs to everybody, Anna

Anna, Thank you for your response. The medication the doctor gave me was for blood pressure but he thought it may help some with the dizziness as well. I did not fair well on it so he took me off of it. The PA in his office removed wax from my ears and my hearing has not been the same since that fateful day. Now loud noises and just eating something crunchy causes me great disocomfort. My ENT wants me to see someone who specializes in the inner ear only. So I will make an appointment with him next week. I have had this condition for 3 months and I see no improvement. I guess it just takes time. Thanks for your thoughts.

So I finished my herbal anti-viral pills....and I think that they helped a bit, but then again I might just really really to believe that they did. My main concern is this lightheaded feeling all the time....especially when I try and go out and do a normal activity, I feel like I am going to pass out....like my head is a balloon. FOr all those that know more than me about this.....is this a symptom of labs? Does anyone else get this feeling? Other than that I feel like I am recovering.....just feel lightheaded all the time.

lauren....same as me...thats what i have the same feeling....youll go through different symptoms good and bad through the months...u will always have the head feeling but little things will come and go...like for me now under my eyes are real dark i guess im tired.....sometimes i shake somethimes eyes are bloodshot etc....but i always have the head feeling 9 months today....hopefully it will be going away soon

Thanks for the reply Chad....I know that you will be better before a year is up...just try and get some rest ofr those dark circles. Maybe that means that the toxins for the viral ear problem are making there way out of your body. I am going on 6 1/2 months now. I have seen every doctor that I can and had every test done and everything points to me being healthy....but I know that this weird head feeling just won't go away. I don't feel sick otherwise.....so I can only guess that it would be something inner ear that you can't see b/c everything else that the doctor's look for they can not find....they(doctor's) keep trying to give me antidepressants for what I am feeling....and I am sure that I am depressed...but it is only b/c of this heard problem and not soley depression and anxiety like some try and tell me. How is everyone else? I haven't heard from Cop for awhile...I hope that it means he is all better! Dee how are you? You were almost better too right? Happy Halloween to everyone...I hope that we are all better very very soon!

Everybody – We all are very often OFFENDED by WRONG words addressed to us from our family members, or friends. They love us and care about us in our sometimes LONG-TERM illness, but still - they DO NOT UNDRESTAND and COMPLETELY BELIEVE, that we ARE SICK because we often LOOK GOOD! You absolutely MUST read this booklet - “But you LOOK good!”. It is just 48 pages (all exceptionally well written!). The author put into words what I have felt for more, than 30 years of my labs/BPPV/or whatever it is.

http://www.myida.org/booklet.htm

Actually, me and my husband even had SOME FUN reading the booklet, because we both RECOGNIZED ourselves!!!!

Yours, Anna (still lightheaded, but in better mood and with little more energy)

Hi all, I have not posted in some time. I am mostly 98% recovered from Labs and am dealing. However, I wanted everyone to check into Allergy Shots. My ENT put me on shots and I have noticed since starting the shots I have been getting better. The ENT said that they have noticed a large number of LABS is actually due to Allergic reactions. Hmmmmm. If I can get the Dr to write me a slip saying I'm allergic to work then I would be all set. However in the meantime here in Phila P.A. USA it's work and dealing with the last bit of LABS that won't give up.

Hi all,

I too would say after about 10 months that I am nearly recovered from Labs but not quite. I am going about my life as normal now after suffering from terrible anxiety and being off work for 5 months. I go shopping, to work, etc and don't let this thing stop me now. I still have mild dizziness off and on and if I am somewhere which is really busy I get a little overwhelmed and dizzy though I make myself carry on as normal. When I get dizzy it always seems to start with a feeling in my ears so I know this is connected to my inner ear. Girls, I was always feeling terrible at 'that time of the month' and last time I took a course of dieuretics and it helped enormously, no dizziness, though since I have stopped taking them the dizziness is back. Something to think about! Anyone know if you can take these things constantly without a break? It would be interesting to see if that would work.

Yes, one of the annoying things is that I do look so well and people seem to forget that you are in fact still suffering. But, hey I've been to hell and back. People have short memories!

I'm off for my flu jab today. I didn't have it last year and had the worst virus I have ever had and then got Labs after it. Speaks for itself so I'm definitely having it this year. The allergy aspect is quite interesting. I don't suffer as such from allergies, but I do suffer from nasal congestion, I have to use a nasal spray every night. When I was young I had my adenoids out because I was suffering from ear trouble and I also have asthma. Maybe a link there somewhere.

Take care everyone.

SANDIE

Hi Rich!

I'm pretty new to labs and am very interested in the allergy theory.....I always seem to be stuffed up and at least once a year have sinusitus. What did they find out you were allergic to? I'd really appreciate a reply when you have the time. It's great that you're feeling better! Wendy

rich what do u mean 98 percent what is the 2 percent holding u down????

My ENT did a workup on me for allergies. When I was a kid I had shots once a week for 14 years. Here I am 26 years later and having to get shots again. I am allergic to ragweed, mold and a couple of other things.

My 98% is that my left ear the drain canal always feels swollen and I have had mild dizziness at times. From dealing with the Labs I learned to rest when I needed it and push on when I had to. My Dr also told me I have a deviated septum and the one side that is clogged is the side that has drainage problems from the deviated septum. He has also said that due to the eustachen tube getting irritated from things like bad drainage in the nose, it can cause the imbalances.

I have noticed that since my shots little by little I am not getting as many issues with the dizzines that I used to get. Stuff like riding the elevator and getting off and still feel like I was going up...

Hi everyone .... Hi Lauren ..!

Yes, i think i am getting better - I have days still when i am very tired..and i am still not back at work (work from home)

BUT i think it is just a anxiety thing going back to work.. in the last month i have gotten out a lot more - movies, drinks, peoples houses etc..

Some days i have my energy back - some days not -But i am going to a network chiropractor like twicea week for a bit - they dont manipulate they treat you with energies -

and i know 2 months ago i would not have been able to even sit in their waiting lounge and have the treatments due to the anxiety etc etc

So, its baby steps!! 2 months ago i thought there ws no ways i would get back to gym by any means - and i still dont think i could do a major workout ...BUT i am applying to a yoga class which i start tomorrow ...

So - if you stop looking at it week by week - and start looking at what it was like a couple months back - you realise you are improving.

I am not dizzy 24-7, the lightheadedness only comes when i am out , its just the tiredness (comparing to before when i didnt have labs) -- and the anxiety of getting back to work! Hahaha i think i am allergic to work or something coz its the only place i feel really bad - but im sure its the pressure etc of feeling ok in front of your collegues and being normal when really we are not feeling normal!

Lauren, are u working yet?

Good luck to all of you! I am looking fwd to Christmas as i am going to see my family for 3 weeks - 12 hour plane ride & i am not even feeling anxious about the whole journey!

dee

xxxxx

Hi everyone .... Hi Lauren ..!

Yes, i think i am getting better - I have days still when i am very tired..and i am still not back at work (work from home)

BUT i think it is just a anxiety thing going back to work.. in the last month i have gotten out a lot more - movies, drinks, peoples houses etc..

Some days i have my energy back - some days not -But i am going to a network chiropractor like twicea week for a bit - they dont manipulate they treat you with energies -

and i know 2 months ago i would not have been able to even sit in their waiting lounge and have the treatments due to the anxiety etc etc

So, its baby steps!! 2 months ago i thought there ws no ways i would get back to gym by any means - and i still dont think i could do a major workout ...BUT i am applying to a yoga class which i start tomorrow ...

So - if you stop looking at it week by week - and start looking at what it was like a couple months back - you realise you are improving.

I am not dizzy 24-7, the lightheadedness only comes when i am out , its just the tiredness (comparing to before when i didnt have labs) -- and the anxiety of getting back to work! Hahaha i think i am allergic to work or something coz its the only place i feel really bad - but im sure its the pressure etc of feeling ok in front of your collegues and being normal when really we are not feeling normal!

Lauren, are u working yet?

Good luck to all of you! I am looking fwd to Christmas as i am going to see my family for 3 weeks - 12 hour plane ride & i am not even feeling anxious about the whole journey!

dee

xxxxx

Dee.....that's so great that you are getting out like that....so happy for you that you are getting better!!! I am not back to work....I feel like it will be a while before that can happen. I am really afraid to drive w/ this ear prob. I have been getting out less and less.....which is bad I am sure....but the anxiety just really is getting to me. One of my doctor's gave me a sample for this anti depression/anxiety drug. I have avoided taking anything like that the whole time...about 6 months.....but I am thinking about taking it now.....b/c I can't fight the depression from this. Has anyone else tried anything like that,and has it helped? My doc gave me Lexapro. Also...I wanted to know if anyone else gets extreme headaches and feels ten times worse from doing the VRT excercies...I wonder if I should continue doing them b/c it makes me feel so bad afterwards. I really hope that everyone is getting better...and if you are better please post...I would love to hear about it! Thanks!

Lauren,,,

Dont you worry, I am not back at work either & i think it will be a while too untill I am back at work -

As i say, I have had good days when i can get out & about - but i also have the bad ones still! When I am soo tired i practically cant do anything!

I did yoga saturday, and the whole of sunday i was sooo tired! my body obviously aint used to any form or exercise!

dee xxx

hi all, dee, it really is good to hear that you are feeling better- it really gives hope to us all! just wondering, when anxious, do you still get spin outs whan you push yourself with things, as i find that when i push myself now that i get setbacks, and the spin-outs come back!

hope ypu are all feeling better, love lamb X

Lamb --

when anxious it definately brings it on..

How do you mean by pushing yourself? what do you do exactly that triggers things?

Lamb - how are u doing?

Deee

LAUREN - STOP doing any VRT or any other exercises or activities IMMEDIATELY if you feel much-much worse (you said 10 times worse!) Do not listen to anybody - just STOP!!!!! I had EXTREMEWLY BAD experiences (not just once) with Brand-Daroff exercises (prescribed by ENT doctor, by the way). I am too tired today to tell you all the detail.... Listen only to YOUR BODY!

Anna

thankyou dee, I'm not feeling too good at the moment! i've been on serc, and it seemed to be helping me a little. I've now been off work for 6 months, and am virtually house bound. When i go out, and try to start doing normal simple things, for example like last \Saturday when i wanted to feel like part of the family and just went on the car journey to the Supermarket, it brings on spinning attacks, and i am pretty much back to where i started from. I seem to be able to get to a point where i can cope doing thing around the house, but then i'll do something like go for a little walk ouy, and it sends me spinning! love lamb X

i agree when i do alot of stuff at work or get worked up alittle my labs gets alot worse....

lamb,,

Im sorry to hear -- dont worry - concentrate on the things you can do

We will get through this - eventually..

Can i suggest getting home visits from doctors - have u tried a chiropractor ?? The NON mainstream ones deal with energy..

But both might help!

Just try everything & anything!!

deee xxxxx

Hi everyone! thank you so much for the responses to my questions...I really appriciate it so much. My biggest obstacle now.....is the diagnosis of anxiety. My dad's cousin is an ear doctor and he has called him and told him about all of my symptoms and my tests all coming out normal....he says that this is none other than just anxiety. I feel that this is very real to me and something is definately wrong....I wake up every day feeling dizzy and w/ this gosh awful brain fog that just makes me feel not normal....so this is all that anyone thinks it is (anxiety)...and my parents are just dismissing it as that and saying for me just to relax. I am so confused as what to do b/c ear doctors can not help me....but I still have found no releif. All of my symptoms match up w/ everyone of this boards exactly...except that I did not start this w/ a cold or flu. I have an appt. at the Mayo clinic in a week in a half. I just don't want to walk away from there w/ no answer either...or i am at the end of my rope. thank you so much for listening.....this site is a god send. -Lauren

Hi, friends,

Lauren - part of your problem IS ANXIETY - but is came on TOP of a problem (or problems) within your inner ear, or some part of your brain connected to it. In fact, CHRONIC DIZZINESS is such POORLY UNDERSTOOD CONDITION, that at the current state of medical science it CANNOT say what is really wrong with us - "dizzy patients". Anyway, go to your appointment to Mayo Clinic and good luck to you. Keep us informed in any case.

EVERYBODY (including Lauren, who is going to Mayo Clinic)- If you want my personal opinion based on my extended research and surveys (!!!)- DO NOT AGREE TO ANY SURGICAL INTERVENTION if they will try to convince you, that it would improve your condition. It's like "fixing" headches with an axe. It might damage you irreversibly.

Take care Love you all, Anna

Hi everyone - I have read and followed a lot of your comments. I am brand new to this site and really thought I should post. I have been dealing with the same symptoms as many of you have for about 4 months now. I feel as well that this is never going to end. I've had a lot of test done to rule out things. Finally my ENT said I had vestibular neuronitis, which I think is similar to labs. I am now going to have an ENG done. Is this something that I should do. I have gotten a lot better over the months. I still work FT and have a 1 year old. I usually have good days and then I'll have a couple of really bad days. I hate that. I just went out and bought Ginko to see if it would help. I also take amnityrptiline(anti-dep) for my headaches. Has anyone else taken these? Hope everyone is doing well.

Hi everyone - I have read and followed a lot of your comments. I am brand new to this site and really thought I should post. I have been dealing with the same symptoms as many of you have for about 4 months now. I feel as well that this is never going to end. I've had a lot of test done to rule out things. Finally my ENT said I had vestibular neuronitis, which I think is similar to labs. I am now going to have an ENG done. Is this something that I should do. I have gotten a lot better over the months. I still work FT and have a 1 year old. I usually have good days and then I'll have a couple of really bad days. I hate that. I just went out and bought Ginko to see if it would help. I also take amnityrptiline(anti-dep) for my headaches. Has anyone else taken these? Hope everyone is doing well.

Hi

I have also had the distinct pleasure of Viral Neuronitis or whatever it is labelled for the past 3 1/2 months.

I managed to get rid of it totally after 1 month, and had 10 days of no symptoms whatsoever.Then I got struck down again and have had it ever since.

Luckily I have not had violent attacks or Vertigo that keep you housebound.I just feel spaced out and kind of drunk, which is more of annoyance in my hectic life.I work full time and got this when starting a new job.Great timing!

I have not posted until now as I thought I could not add anything that has not already been said.

I sympathise will people who are housebound, atleast I can move around.The last couple of weeks have seen improvement and im sure I will shake this as I have already done so once.Thats not what worries me.What worries me is when i get rid of it i will have continuous bouts year after year.That is my only major concern.

The fact is you will notice throughout this blog people have stopped posting, meaning they have recovered.Everyone recovers so nobody has to worry.

My advice to you all is don't let this control your life.I let that do it to me in the 1st month and it had a detrimental effect as I stopped going out and socialising etc.Worrying about this and getting depressed makes it much worse.The more positive you are the better you feel.So go out and have some fun.In fact I'm hung over today and feel a little bit more spaced out, bit its the weekend so who cares.Alcohol doesnt make it worse whatever anyone says.It will not delay recovery.I find it makes you relax and you can just forget for a while.

I don't take any medication at all.I stopped taking stuff cos i think it makes you feel worse and delays recovery.I going for the natural way i.e the more active you are the quicker it goes.