Labrinthitis - HELP - Please Read & Reply - Inner Ear Disorders Message Board

I Robertson · 05-15-2003, 05:22 PM

Hi- Oh how great it was to read through lots of your links as I am feel that I am truelly not alone.

My Story: I am a 29 year old mum of two and am currently pregnant and the baby is due in July.

Ok - Initially I had loud ringing in my ear and ear ache for a couple of days combined with brief dizziness. I really thouhgt nothing of it and went on holiday to America.

Whilst I was out at dinner I suddenly felt intensly dizzy like I was going to faint and than got severe vertigo. Having never experienced any thing like it before I thought I was dying or at best dying of a brain tumour.

I got a flight back to the UK and went to see my doctor who said it is JUST viral labrin's. It should clear up pretty quickly and gave me some anti-vertigo medication. Well I was in bed for the best part of the next 3 months with 24/7 severe vertigo/nausea/constant spinning/movement senations/objects in vision jumping etc etc.

After a good 4 months it improved so as I just felt off balance and light headed together with brief spurts of intense vertigo when in ceryain positions. I then went to see an ENT doctor really to put my mind at rest that I was not suffering from a sinister disease. I had an MRI scan which thankfully was fine. Much to my relief I went away really on a high that although unpleaseant was not a death sentence.

Well really my balance evr since then (Mar 01)so over two years ago has never got back to perfectly normal. I seem to suffer from re-current attacks that then leave a nasty sensation of imbalance.The longest time with no/very minor symptoms at all has probably been 1 or 2 months.

However right after I found out that I was pregnant the whole saga started again. Basically what I have now is not so much vertigo (the acute phase) but just and I use the word JUST lightly is the following: chronic persistent sensation of imblanace upon standing and walking (best described as walking on a bouncy castle), intermitent mild nausea (I am used to this and it really does not bother me that much now),a funny light headed feeling (like when you have not eaten enough, sometimes brief spells of feeling very faint which tend to clear very quickly, occasional sensataion that I am dropping or moving when I am not.I really do not like standing still - I tend to lean on something if I have to do this. Watching a jerky TV programme can make me feel yuck as can watching a lot of movement.

I really hate the sensataion of being off balance - any one else got or had a similiar experience to this. I have been back to the ENT doctor recently who basically says that this is the after effects of labr's and will eventually burn itself out.

He suggests that once I have had the baby I should go for V Rehab. Sometimes I feel really down about it all and wonder if I will ever get better - to me 2 years seeems liek along time.

I still go through patches of being a bit scared of the symptoms and simply weant to stay still and not move. But from all that I have read it would appear that that is one of the worst things that you could do. So I tend to plod on during the day (no choice with little kids any way) and rest/sit down most of the evening.

Another thing is that I am sonetimes afraid that I am going to actually faint - of course I never have. The funny thing is that although I feel like this to look at me you would never know that anything is wrong. I walk properly and look to all intents and purposes fine. My husband kinda thinks that this is a pain and am I imagining it! One of the hardest aspects in coping with this problem is not knowing when I will be completely better it is not like breaking your leg (6 weeks in plaster and 3 months physio) instead we ahve to cope with 'as long as a piece of string etc etc'. I know that my symptoms could be a whole bunch worse but they still bug me.

I find that I am focusing alot on how my balance is and even when I do forget and do something else I then feel off balance or dizzy so I remeber all over again. I know this is a long letter but PLEASE REPLY if you can relate to what I have written. Thanks for reading this!!

Subs30 · 05-15-2003, 05:48 PM

Vestibular Injury:

When the balance system is damaged, it has little ability to repair itself.

The body recovers from the injury by having the part of the brain that controls balance re-calibrate itself to compensate for the unmatched signals being sent from the damaged and well ears.

The balance system of the inner ear and brain can be damaged in many ways.

Viral infections (labyrinthitis and vestibular neuritis), disorders that affect the fluid levels in the inner ear,........and degeneration of the balance organ cells with aging can all cause--------

permanent damage to the balance organ or balance nerve.

Compensation, Decompensation, And Failure to Compensate

."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. "...

The entire medical paper on Compensation, Decompensation, And Failure to Compensate is at:
[url="http://www-personal.umich.edu/~boismier/Compensa.htm"]http://www-personal.umich.edu/~boismier/Compensa.htm[/url]

brina · 05-16-2003, 02:35 AM

hello irobertson,
i can relate to u at the moment. do u find looking close at the computer screen makes it worse? i have 4 children and i am finding it very difficult. as i cannot concentrate on there needs this makes me depressed. do you feel this bouncing feeling even while sitting or lying down. i do . and i also cannot
stand watching t.v. with a lot of movement. the camera men are not very good r they. though i never noticed it before i got this constant moving sensation.
i have had vertigo before but it has settled after a few hours. but this has been ongoing for weeks.
i hope u feel better soon and for everyone else with these symptoms.

I Robertson · 05-16-2003, 02:49 AM

Hi! Many thanks for the links to the articles about compensation, decompensation and lack of. That was really interesting! the funny thing is that I can't see why I have not completely compensated.

I do not have nor ever have had a brain injury or disorder that would theoretically hamper compenstion. Also I do not avoid normal dialy activity (even though it feels uncomfortable) I still drive, clean the house, go shopping etc etc.

The only thing that I do avoid is any pro-longed standing in one postion (so I tend to sit down if at all possible or lean on some-thing to reduce the unsteadiness sensation). The other I guess is that I no longer go for walks like I used to. Again as I don't like the unsteadiness sensations.

But during the day I move around the house alot so why would that not do? The ENT doc mentioned that the imbalance may be triggered by the pregnancy. In that increased fluid levels may in turn raise the presuure in my inner ear.

Personally I wonder if it was also set off again by a major reduction in activity when I first became pregnant. As I had a serious complication that meant I was more or less bed ridden for the best part of 6 weeks. Also I was so sick 24/7 that I tended to feel like staying in bed as much as possible. Perhaps that did not help and maybe un-tuned the compensation that my brain had already made.

I guess that my brain has made some improvements any way as I do not have vertigo (spinning sensation) that is a kin in the acute phase. Gee - I just want to be back to normal right now if possible. THANK YOU VERY MUCH FOR YOUR REPLY!!!!!!!!!!!!!!!!

I Robertson · 05-16-2003, 03:09 AM

Hi Brina,

Good to hear from you. In answer to your question YES I often have the sensation of movement even when I am still. Sometimes like now I cannot say that I notice it but at other times it is persistent. Like if I go out for dinner I will be sitting at the table and I feel as if I am moving. So YES I deffinatly know how annoying and distacting it is.

Yep TV deffinately makes me feel gross if the camera work is unsteady or there is alot of movement - like you before this problem I never even noticed it.

Do you have the senstaion of imbalance that I mentioned earlier. Baiscally the senstaion of being slightly off balance when walking or standing!combined with feeling light headed?

I totally sympathise with how you feel about not being able to concentrate on your kids the way you would like. Its like this balance thing kind of pre-occupies you as you are having to do alot of what I call self talk eg: 'its ok I am not going to faint or fall, this will go away etc etc'.

The weird thing is that although I have had imbalance symptoms every day this year I still don't like it and it still bothers me.

What I try to do is do stuff with the kids (sitting down)so that I feel less guilty. I tend to find that if I am being partucularily awful I become quite snappy and can over react to situations that normally would not bother me much.

The other thing is that my husband works away 3 days a week and I find that stressful. Some how just having him home after work or just knowing he is not far makes me feel more secure and less stressed. That in itself is also annoying as I feel some what dependant.

Do you find that your symptomms get worse in the evening? Thanks for your reply!!!!!

Hi to any-one other fellow suffers.