Sharp Blue: Labyrinthitis comments, page 4

I continue to be stunned by the number of comments following my initial post, Labyrinthitis; or The Missing Week! There are so many such comments on the previous page that here's another fresh page for them.

1. Comment by kate on May 3, 2005 9:28 PM permalink

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

2. Comment by ary on May 4, 2005 8:14 PM permalink

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

3. Comment by wnb on May 5, 2005 3:27 AM permalink

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

4. Comment by Laurie on May 5, 2005 2:34 PM permalink

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

5. Comment by al on May 5, 2005 3:46 PM permalink

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.

6. Comment by Laurie on May 5, 2005 5:10 PM permalink

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

7. Comment by Mary on May 5, 2005 5:59 PM permalink

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

8. Comment by Mary on May 5, 2005 6:02 PM permalink

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.

9. Comment by Anna on May 5, 2005 9:30 PM permalink

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

10. Comment by Laurie on May 5, 2005 9:40 PM permalink

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

11. Comment by em on May 6, 2005 12:44 AM permalink

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

12. Comment by Mary on May 6, 2005 7:41 PM permalink

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

13. Comment by em on May 6, 2005 8:46 PM permalink

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

14. Comment by Mary on May 7, 2005 2:27 AM permalink

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

15. Comment by em on May 7, 2005 1:08 PM permalink

I know mary, its all quite amazing really.

Have a nice weekend xx

16. Comment by Sandie on May 7, 2005 3:50 PM permalink

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

17. Comment by Laurie on May 7, 2005 10:34 PM permalink

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

18. Comment by Mary on May 8, 2005 1:57 AM permalink

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

19. Comment by sandie on May 8, 2005 1:33 PM permalink

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

20. Comment by Laurie on May 8, 2005 7:16 PM permalink

Hi Everyone....

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

Laurie

21. Comment by em on May 8, 2005 10:21 PM permalink

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

22. Comment by al on May 10, 2005 9:18 AM permalink

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.

23. Comment by Laurie on May 10, 2005 12:24 PM permalink

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

24. Comment by chad on May 10, 2005 2:26 PM permalink

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..

25. Comment by Anna on May 10, 2005 3:31 PM permalink

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

26. Comment by Laurie on May 10, 2005 3:58 PM permalink

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

27. Comment by chad on May 10, 2005 5:04 PM permalink

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....

28. Comment by chad on May 10, 2005 6:21 PM permalink

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

29. Comment by mary on May 10, 2005 7:03 PM permalink

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

30. Comment by George on May 11, 2005 4:29 AM permalink

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

31. Comment by Anna on May 11, 2005 3:34 PM permalink

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

32. Comment by sandie on May 11, 2005 8:11 PM permalink

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

33. Comment by Laurie on May 11, 2005 10:58 PM permalink

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

34. Comment by Mary on May 12, 2005 2:51 AM permalink

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

35. Comment by wnb on May 12, 2005 3:13 AM permalink

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.

36. Comment by sandie on May 12, 2005 11:14 AM permalink

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

37. Comment by em on May 12, 2005 3:58 PM permalink

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

38. Comment by Laurie on May 12, 2005 8:13 PM permalink

Think I gotcha Em :)

Laurie

39. Comment by kkate on May 13, 2005 11:12 PM permalink

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

40. Comment by sandie on May 14, 2005 11:12 AM permalink

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

41. Comment by em on May 14, 2005 9:56 PM permalink

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

42. Comment by kate on May 14, 2005 11:00 PM permalink

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

43. Comment by kate on May 14, 2005 11:02 PM permalink

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

44. Comment by Blaine Tobin on May 15, 2005 2:37 AM permalink

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!!!

45. Comment by Steve on May 16, 2005 3:55 PM permalink

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.

46. Comment by George on May 17, 2005 12:02 AM permalink

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

47. Comment by emily on May 17, 2005 7:10 PM permalink

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)

48. Comment by kate on May 17, 2005 9:27 PM permalink

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

49. Comment by chad on May 18, 2005 8:45 PM permalink

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%.......

50. Comment by chad on May 19, 2005 9:48 PM permalink

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

51. Comment by Anna on May 19, 2005 10:51 PM permalink

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

52. Comment by george on May 20, 2005 12:13 AM permalink

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

53. Comment by mary on May 20, 2005 12:27 AM permalink

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

54. Comment by jayjay on May 20, 2005 4:40 PM permalink

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

55. Comment by Anna on May 20, 2005 10:31 PM permalink

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

56. Comment by Steve on May 21, 2005 3:17 AM permalink

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.

57. Comment by Sandie on May 23, 2005 1:36 PM permalink

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

58. Comment by Anna on May 23, 2005 3:28 PM permalink

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

59. Comment by sandie on May 24, 2005 2:30 PM permalink

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

60. Comment by chad on May 24, 2005 9:19 PM permalink

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!!!!!!!!!!!!!!!!!!

61. Comment by Steve on May 25, 2005 12:40 AM permalink

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.

62. Comment by chad on May 26, 2005 3:29 PM permalink

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

63. Comment by Anna on May 26, 2005 10:21 PM permalink

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

64. Comment by Steve on May 27, 2005 1:05 AM permalink

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.

65. Comment by dee on May 28, 2005 9:56 AM permalink

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!

66. Comment by Dan on May 28, 2005 6:44 PM permalink

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

67. Comment by Dee on May 28, 2005 8:57 PM permalink

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!

68. Comment by mary on May 29, 2005 4:54 AM permalink

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

69. Comment by sandie on May 29, 2005 1:26 PM permalink

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

70. Comment by dee on May 29, 2005 2:44 PM permalink

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?

71. Comment by George on May 30, 2005 12:27 AM permalink

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

72. Comment by Heather on May 31, 2005 1:25 AM permalink

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

73. Comment by dee on May 31, 2005 9:20 AM permalink

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

74. Comment by Mary on June 1, 2005 3:49 AM permalink

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

75. Comment by George on June 1, 2005 4:29 AM permalink

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

76. Comment by chad on June 1, 2005 9:50 PM permalink

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

77. Comment by chad on June 1, 2005 9:58 PM permalink

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.....

78. Comment by Stuart on June 2, 2005 4:33 PM permalink

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

79. Comment by Anna on June 2, 2005 7:15 PM permalink

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

80. Comment by chad on June 3, 2005 7:18 PM permalink

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

81. Comment by Rich on June 4, 2005 10:39 PM permalink

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.

82. Comment by on June 5, 2005 2:41 PM permalink

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.

83. Comment by jayjay on June 5, 2005 2:42 PM permalink

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.

84. Comment by wnb on June 5, 2005 6:12 PM permalink

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.

85. Comment by em on June 5, 2005 11:00 PM permalink

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

86. Comment by Anna on June 6, 2005 2:13 PM permalink

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

87. Comment by jayjay on June 6, 2005 10:44 PM permalink

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

88. Comment by David on June 7, 2005 3:24 PM permalink

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

89. Comment by David on June 7, 2005 4:16 PM permalink

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.

90. Comment by Anna on June 7, 2005 5:41 PM permalink

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

91. Comment by jayjay on June 7, 2005 5:59 PM permalink

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.

92. Comment by Dan R. on June 7, 2005 7:47 PM permalink

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.

93. Comment by David on June 7, 2005 8:09 PM permalink

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,

94. Comment by google on June 7, 2005 9:50 PM permalink

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

95. Comment by Anna on June 7, 2005 10:52 PM permalink

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

96. Comment by em on June 8, 2005 8:53 PM permalink

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

97. Comment by on June 9, 2005 6:05 PM permalink

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

98. Comment by jayjay on June 9, 2005 6:47 PM permalink

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.

99. Comment by Linda on June 9, 2005 8:04 PM permalink

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

100. Comment by David on June 9, 2005 8:24 PM permalink

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

101. Comment by David on June 9, 2005 8:33 PM permalink

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!

102. Comment by on June 9, 2005 8:35 PM permalink

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

103. Comment by Anna on June 9, 2005 10:21 PM permalink

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

104. Comment by em on June 9, 2005 10:49 PM permalink

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

105. Comment by George on June 10, 2005 12:33 AM permalink

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

106. Comment by Cop on June 10, 2005 6:44 AM permalink

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.

107. Comment by Cop on June 10, 2005 6:49 AM permalink

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.

108. Comment by jayjay on June 10, 2005 6:16 PM permalink

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.

109. Comment by browser on June 10, 2005 6:22 PM permalink

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?

110. Comment by wnb on June 10, 2005 8:07 PM permalink

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

111. Comment by Cop on June 11, 2005 10:52 AM permalink

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

112. Comment by jayjay on June 11, 2005 9:33 PM permalink

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?

113. Comment by em on June 12, 2005 12:33 AM permalink

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

114. Comment by Cop on June 12, 2005 10:49 AM permalink

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?

115. Comment by em on June 12, 2005 12:10 PM permalink

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

116. Comment by lorraine on June 12, 2005 7:07 PM permalink

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

117. Comment by Cop on June 13, 2005 5:01 AM permalink

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?

118. Comment by Cop on June 13, 2005 5:05 AM permalink

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?

119. Comment by em on June 13, 2005 7:40 AM permalink

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

120. Comment by Steve on June 13, 2005 8:21 PM permalink

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

Steve

121. Comment by Anna on June 13, 2005 9:50 PM permalink

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 suc