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Old 08-05-2012, 12:42 PM   #1
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Bilateral Loss

After having BPPV five years ago which was resolved, last year I started having severe spinning vertigo episodes again. The audiologist diagnosed bilateral vestibular loss after abnormal calorics and abnormal rotational chair results. My right ear has severe loss (including no response to ice water) and my left ear is just slightly better.

However, my otologist/neurotologist says that the results conflict with his clinical findings. I do not have ataxia or oscillopsia. My DIE, dynamic posturography, and Eyes Closed Tandem Romberg are all normal. My recent calorics were repeated three times. Five years ago my ENG was normal.

Two vestibular therapists have tested me with normal results and they do not understand how I could have compensated with bilateral loss to the extent that I have. I have not had any ototoxins or any of the usual suspects for bilateral loss. Also, my only complaint is spinning vertigo which doesnít seem to point to a bilateral loss diagnosis.

Has anyone had abnormal calorics and rotational chair but with other normal test results?

 
Old 08-07-2012, 09:33 PM   #2
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Re: Bilateral Loss

I have BVL, happened close to 7 years ago now.
Initially I also would get occasional severe bouts of vertigo that would only last for seconds.
Initially my DR thought I had BPPV and treated me for it.
The shots of vertigo started to diminish but I also started to notice little things that indicated my balance was off.
I went for my first ENG and the results were very similar to yours. At that point I had no oscillopsia. When my Dr. got the results he asked me how I was feeling, at that point I felt perfectly normal...or so I thought.
I first noticed the oscillopsia one night while driving, the street lights appeared to be moving and I asked my wife if she saw the same thing...she did not.
Anyway, I can't remember exactly how long it took (probably around 4-5 months) until the oscillopsia became severe and I really started to struggle.
Apparently even a little bit of function makes a big difference. I went for another ENG and it showed no function at all in either side.
Don't let my story get you down. Everyone is different, you may adjust with very few problems or you may continue to function as normal with severe loss.
Even though I have total BVL, I have been able to adapt very well.
The oscillopsia diminished to the point to where I only notice it occasionally.
I lead a pretty normal life.

Last edited by manybikes; 08-07-2012 at 09:49 PM.

 
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Old 08-12-2012, 10:04 AM   #3
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Re: Bilateral Loss

Thank you for your reply.

Do you remember how long it took for the oscillopsia to develop after the vertigo episodes started?

And how did the severe oscillopsia affect your daily life?

Thank you.

 
Old 08-12-2012, 11:17 AM   #4
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Re: Bilateral Loss

I believe the oscillopsia started about a year after the appearance of the vertigo.
The spells of vertigo were very short but very violent.
The oscillopsia was at first only noticed at night but quickly got progressively worse.
It was bad for about 6 months then I started to get short periods where it would diminish considerably. These better periods started to get longer in duration as time went on.
I can now shake my head back and forth etc. and objects hold steady for me, the oscillopsia is now pretty much gone.
I also no longer get vertigo attacks (when they ended that is when the oscillopsia started), I believe you need to have at least some inner ear function in order to experience vertigo.

There are other things like brain fog or a swimming sensation in your head that can also make life interesting Watching a movie or computer screen can initially be difficult.
For a short time I used to stagger like a drunk when walking, walking at night was very difficult.
However...all of this does go away as your brain re-trains itself...honest!

Don't spend a bunch of time worrying about this stuff as there is a good chance you will not experience any of it. Going totally BVL is very rare.

 
Old 08-12-2012, 12:48 PM   #5
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Re: Bilateral Loss

Thanks for your encouragement!

Right now the vertigo is so scary because it is unpredictable. But because I seem to get the vertigo after my head is in a downward position for a period of time, my neurotologist thinks that it might be cervical or BPPV related. And why he is questioning my ENG and rotational chair results. But after reading some of the posts on this board I can see how my situation is like many others here with BVL. So I am inclined to believe the results. Have you ever heard of an inaccurate result for ice water caloric or rotational chair?

Because of the vertigo I am no longer driving or working. I am a teacher and after having vertigo in class I had to stop. I will not drive as long as I am having the vertigo. I will not put my life or anyone else's in danger. But right now that is what I miss the most - being able to drive.

Like yours, my vertigo is short and violent with eye movement. Afterwards, I have trouble standing for about an hour and trouble with walking for a few hours more. I always sleep well that night from exhaustion because of the episode.

I don't know if I should hope that the vertigo goes away if the oscillopsia is going to replace it!! That seems very difficult to cope with.

I just got back from a short vacation where I noticed how my walking became erratic the more fatigued I got. After a long day I was staggering a bit. I thought it might be BPPV related but now I can see that it might be the BVL.

How rare is total BVL? I had a normal ENG five years ago and then my recent one showed total loss on one side and just a little better on the other. Is it possible that it could stay this way and not become total loss? I have had this for about eighteen months now.

Thanks so much for being there to help us newbies. It feels so good to know that you are there.

 
Old 08-12-2012, 03:02 PM   #6
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Re: Bilateral Loss

Quote:
Originally Posted by jankathnad View Post
Thanks for your encouragement!

Right now the vertigo is so scary because it is unpredictable. But because I seem to get the vertigo after my head is in a downward position for a period of time, my neurotologist thinks that it might be cervical or BPPV related. And why he is questioning my ENG and rotational chair results. But after reading some of the posts on this board I can see how my situation is like many others here with BVL. So I am inclined to believe the results. Have you ever heard of an inaccurate result for ice water caloric or rotational chair?

Because of the vertigo I am no longer driving or working. I am a teacher and after having vertigo in class I had to stop. I will not drive as long as I am having the vertigo. I will not put my life or anyone else's in danger. But right now that is what I miss the most - being able to drive.

Like yours, my vertigo is short and violent with eye movement. Afterwards, I have trouble standing for about an hour and trouble with walking for a few hours more. I always sleep well that night from exhaustion because of the episode.

I don't know if I should hope that the vertigo goes away if the oscillopsia is going to replace it!! That seems very difficult to cope with.

I just got back from a short vacation where I noticed how my walking became erratic the more fatigued I got. After a long day I was staggering a bit. I thought it might be BPPV related but now I can see that it might be the BVL.

How rare is total BVL? I had a normal ENG five years ago and then my recent one showed total loss on one side and just a little better on the other. Is it possible that it could stay this way and not become total loss? I have had this for about eighteen months now.

Thanks so much for being there to help us newbies. It feels so good to know that you are there.
Yep, getting a shot of vertigo while standing in front of a Class is a real show stopper! I am not a teacher but there were a few times I simply fell to the ground in front of co-workers etc.
Initially I could also bring on the vertigo by tilting my head a certain way, but that was for a brief time.
Before this all started for me I had never had an ENG..no need for it.
I also have had the rotary chair, it is supposed to be the ultimate test.
I did not have the chair test until after I had lost both sides.

I also had to quit driving for awhile when I was getting the vertigo shots. When someone looks at your eyes while it is happening they are vibrating back and forth at an incredible speed.

I am not a doctor but you may want to ask your Dr. about doing something now to prevent further loss of function. I have heard that steroid treatment can sometimes halt the loss.

In my case the reason for my BVL is unknown...my inner ears simply started to crater, my Dr. didn't know exactly what was wrong and by the time I got referred to a specialist it was too late to do anything about it.

 
Old 08-13-2012, 08:28 AM   #7
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Re: Bilateral Loss

Thanks for your reply.

When I am not having vertigo my balance is normal. Was your balance normal until the total loss or did you have balance problems before that (during your time of vertigo episodes)?

Is tinnitus a symptom of BVL? I get it in one ear - the 'good' one.

Also, do you ever feel the ground moving when no one else does? This has happened to me a number of times.

Would you say that there is a good chance that I will lose balance in my 'good' ear now that my other ear is dead? I will discuss the steroid issue with my doctor when I see him in a few weeks.

Thanks for all your good information.

 
Old 08-13-2012, 10:54 AM   #8
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Re: Bilateral Loss

Quote:
Originally Posted by jankathnad View Post
Thanks for your reply.

When I am not having vertigo my balance is normal. Was your balance normal until the total loss or did you have balance problems before that (during your time of vertigo episodes)?

Is tinnitus a symptom of BVL? I get it in one ear - the 'good' one.

Also, do you ever feel the ground moving when no one else does? This has happened to me a number of times.

Would you say that there is a good chance that I will lose balance in my 'good' ear now that my other ear is dead? I will discuss the steroid issue with my doctor when I see him in a few weeks.

Thanks for all your good information.
Yes, my balance seemed normal when the vertigo attacks started.
I had been an avid slalom water skiier for many years. I had done hundreds of single ski deep water starts with no problems whatsoever, it was second nature to me.
Just after the vertigo attacks started I went out for my first ski of the season. Much to my puzzlement (and other skiiers in the boat) I could not do a deep water start after multiple tries. The spotter in the boat said that as soon as I started to get the ski on plane I would simply fall over sideways.
It was like I had never done it before and I was totally at a loss to explain why I kept falling over.
This was the first sign of trouble. At the time my balance felt totally normal.
Things started to fall apart pretty fast after that.
Anyway...in short...my balance seemed normal until I started to do more difficult tasks, at the time my Dr. never did any basic balance testing and suggested I just might be getting old ( uh?..NOT..)

Yes, there were times where I thought I felt the ground move when no one else did...I wish I would have known about this website back then...at the time I honestly thought I was losing my mind.

I do have a very slight case of tinnitis but not due to BVL...more due to too much loud heavy Rock music when I was younger

From what I have read, vertigo is often caused by the uneven function between the two inner ears, it is the mixed signals from one or both sides (or lack of) that can cause trouble.

Although your present condition has many similarities to what I went through this does not mean that you will totally lose all function. This is a question you have to ask your Dr. or a specialist, and even they may be unable to give you a definative answer.
I think I read somewhere that there are only about 10,000 (or less) cases of total BVL in North America...that's not very many compared to the population. (I am unsure where I read that number). In the past seven years I have never personally met another BVL. I live in a City of over 1 million and the Physio I went to said I was only the second one they had ever treated who had total loss.

Make sure you discuss the possibility of losing all function with your Dr. and what steps are available to prevent that from happening.

If you have other questions to ask me, glad to help in anyway I can.

Last edited by manybikes; 08-13-2012 at 12:46 PM.

 
Old 09-08-2012, 06:09 PM   #9
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Re: Bilateral Loss

Thanks so much for the information that you are so willing to share. It is much appreciated.

I had another appointment with my otologist/neurotologist recently and he still doesn't think that my vestibular test results are correct. He thinks that my clinical symptoms don't match the results so he is not willing to say that I have BVL.

I still have intense vertigo episodes. That has been going on for about 18 months now. Still no oscillopsia or ataxia. Just the vertigo. The doctor thinks it may be BPPV related (not the normal canal) or vascular. But there is the abnormal ENG/rotational chair. The doctor has said that he has never seen a case like this in all his years in the field. So, needless to say, I am frustrated and confused. I am at a loss as to where this is heading.

After reading many posts on this board I am not convinced that it is not BVL. I think only time will tell. I don't know if or when the "usual" symptoms will kick in, but I guess within the next year I will know more.

Thanks again for listening.

 
Old 09-09-2012, 08:38 AM   #10
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Re: Bilateral Loss

I feel for you. It also took me well over a year to try and get answers. In the meantime it sure does put a kink in your life.
As you can tell from reading this forum, inner ear disorders can be extremely frustrating. Despite all the advances in medical science the inner ear still seems to stump most Doctors (they can do a face, heart transplant etc. but are unable to solve vertigo)
Hang in there, resolution will come but it sometimes takes time.

Last edited by manybikes; 09-09-2012 at 08:40 AM.

 
Old 09-09-2012, 04:19 PM   #11
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Re: Bilateral Loss

I have a question about the oscillopsia. I believe that you said you first noticed it at night. Was this while driving, or walking, or at home? How would you describe the effect you felt?

And what was the progression from first noticing it to the worse that it got?

Thanks for your information.

 
Old 09-09-2012, 07:26 PM   #12
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Re: Bilateral Loss

I first noticed the oscillopsia at night while driving. Street lights and the tail lights of cars started to look strange to me, they would move in a fashion I had never seen, kind of like when you jiggle a flash light rapidly back and forth. One night I was in the back yard with friends (having few beers but not that many) I looked at the street light and it was wavering back and forth like it was going to fall. I asked everyone if they saw the same thing...NOT..no one could understand what I was seeing.
Anyway, after that it took approx. 3-4 months before it got real bad, as in I could not read a large street sign while walking. While watching TV the screen would constantly move around, the light on my end table would weave and wobble around while I would try to read, the same street light outside my house would wobble around like it was a piece of spaghetti ! All of this while sitting still!!. If I tried driving or walking at night anything with lights would weave and wobble so bad that it was impossible to tell even what it was. I could not recognize people as they were walking toward me. It is a terrible condition that is almost impossible to describe to a normal person.

However....all of this slowly started to subside as my brain started to adapt. Initially I would get minutes or hours of relief before it would return. Then I started to get days and weeks before the oscillopsia would return (relapse)
Now I no longer have any relapses and only on the rare occasion do I notice a very slight amount of oscillopsia. No trouble reading signs etc. while in motion.
I guess the brain just learns to adapt to the new reality.

Hope this helps...feel free to ask questions.

Last edited by manybikes; 09-09-2012 at 07:36 PM.

 
Old 09-09-2012, 07:39 PM   #13
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Re: Bilateral Loss

I thought that the oscillopsia only happened when you were in motion, but I see from your reply that you can be sitting and still have it. Was it more pronounced when you were moving?

Were you able to read? How about driving? It sounds scary and debilitating. I am so glad that you finally adapted to it. But living through it sounds very difficult.

 
Old 09-10-2012, 12:22 PM   #14
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Re: Bilateral Loss

Yes, the movement can happen even when you are still. It is called Nystagmus, the involuntary movement of your eyes. It is much more pronounced when you are in motion though.
The inner ears play an important role in controlling your eye movement. A signal is sent from the inner ear to tell your eyes your head position and whether it is moving or not. Without this signal your eyes will wander about wondering where to focus.
An example: Initially one of the tests they would do would be to suddenly turn my head (by hand) to one side, my head would turn and my eyes would be delayed in following my head turn....there is a term for this that I cannot remember.

Yes, it is debilitating at first, reading, driving, watching a computor screen were all difficult tasks...actually just about everything was difficult. I went through a period of several months where I rarely drove at all and when I did it was only on secondary roads for a short distance...freeways were out of the question. I would also stagger like a drunk when I walked....I only wish I was!!
I remember reading about a individual who had it so bad that he had to hold his head firmly with both hands to try and read.
Scrolling on a computor screen was very difficult, while I was adapting I would often have to briefly close my eyes while scrolling otherwise it would make me feel dizzy and sick.
There are specific exercises that a Physio Therapist gives you that helps you in the adaptation process. I did these faithfully everyday for many months.

Yes, it is very difficult to live through, I will not sugar coat any of it. Everyone is different so adaptation time can vary between individuals. Adapting is a lot of hard work and patience.

The good news is that, yes, you do learn to adapt and life becomes good again.
You will never be perfectly normal again but you can come pretty darn close.

 
Old 09-19-2012, 01:55 PM   #15
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Re: Bilateral Loss Bilateral Vestibulopathy

Hi, I'm new to Health Boards, so I'm not sure if I'm doing this right. I'm looking to find other people diagnosed with bilateral vestibulopathy. I have been struggling w/this for about 14 years. After the "spinning chair" test, I was told one inner ear is "totally shot," & the other one is "almost totally shot". About 3 yrs. of PT @ home (after learning from therapist) got me past walking w/a cane. I have not done the PT in a long time, wh/is admittedly probably not wise. I am finding fatigue to be a huge problem, in addition to problems standing, getting up & down repeatedly (as in a religious service), walking up or downhill, bending down, reading, some computer work, & just staying up a normal amount of time.

Anyone have similar complaints? I hear this diagnosis is quite rare. Thanks.

 
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