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Old 09-19-2012, 03:07 PM   #16
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Re: Bilateral Loss Bilateral Vestibulopathy

Hi JD

Yes, I am BVL, have been for about 7 years now.
When you say 14 years, does this mean you took PT 14 years ago and the spinning chair test?
Have you been BVL for 14 years or has it taken that long to lose both sides?
I have been able to adapt pretty well, sometimes I do get a little fatigued but in general I am not much different than others.
Initially I did have trouble reading, doing computer work etc. but now none of this really bothers me much anymore.
It is a rare condition...have you every heard of anyone remotely famous who has had it?
I am sure that if a well known Hollywood type ever went BVL we would be hearing a lot about it !!!

 
Old 09-19-2012, 03:32 PM   #17
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Re: Bilateral Loss

14 yrs ago I started having symptoms. For quite a while they couldn't figure out what was wrong; kept sending me to neurologists, & for awhile they thought I might have MS. Finally, I got to a major vestibular center where they did the spinning chair test & diagnosed it. Then I did PT @ a hospital near me for several weeks, & continued doing the exercises for 3 yrs until I no longer needed to walk w/a cane. (I still keep a cane/chair in my car for certain conditions.)

Hope that answers your questions. Yes, a celebrity w/this condition would help!

P.S. Forgot to add photophobia to the list.

 
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Old 09-19-2012, 06:01 PM   #18
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Re: Bilateral Loss

Well, photophobia is not on my list of ailments...how about photogenic! (I only wish)
Just kidding

I never did have to use a cane (or any kind of aid) for walking, although I did stagger around like a drunk for a short while.
I also have done the rotary chair test and they were unable to detect any function on either side...totally kaput!

Do you have oscillopsia ?

 
Old 09-20-2012, 07:19 AM   #19
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Re: Bilateral Loss

Yes, that was my first symptom; it now happens occasionally. Driving @ night & on highways is very difficult. Where I go for choir rehearsals, I have to rely on rides, since the windy road there @ night makes me too dizzy. Highway driving is too fast.

 
Old 09-20-2012, 07:49 AM   #20
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Re: Bilateral Loss

I found oscillopsia the worst symptom to deal with.
On rare occasions I will notice it but it has more or less disappeared...the brain learns to adapt.
You don't have to answer this, but, how old were you when this all started?
I am curious what difference age may have in the adaptation process.

BVL is indeed a very rare condition..I have yet to meet someone in person who has it.
What also makes it difficult is that it is an "invisible" disability, if you lose an arm or a leg people understand, not so with BVL.
It is pretty much impossible to explain to normal people the effect it has on your life.

I really can't complain though, I have been able to adapt very well, even people close to me no longer notice anything different about me.

 
Old 09-20-2012, 08:03 AM   #21
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Re: Bilateral Loss

I was 41 when I experienced the 1st symptoms. Yes, its invisibility is very frustrating. Even close relatives keep forgetting. A close friend recently said that my balance issues "resolved." I had to tell her no, they haven't.

I'm glad you're doing so much better. I wonder what makes the difference. I'm finding it more difficult over time. Sometimes the stupidest little things are a problem.

When this all started, I would try to go to the large grocery store near us, & actually found myself almost in tears, sitting on an inside bench while they rang up my order. Now my husband does that shopping while I go to the smaller, organic store.

 
Old 09-20-2012, 05:22 PM   #22
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Re: Bilateral Loss

I was 50 when things started to fall apart. It took less than a year before I was totally without function...maybe less.
My abilities seem to improve every year. I must admit that I pushed myself pretty hard, part out of necessity and part need.
I would purposely do things that aggravated my condition or that seemed impossible to do.
For example: I took a part-time job at the local golf course 3 years ago as a greens cutter. They did not use sit down mowers, they used the self propelled walk behind type. I was forced to cut perfect straight lines (on the greens) while walking behind and guiding the machine. The work started at 5:00 am and I would end up walking about 4 1/2 miles in a 3 1/2 hour shift. Sound easy? ...nope...even the young people I worked with would be sweating.
At first it was horrible, I had extreme trouble cutting a straight line and turning the machine in a tight circle while walking behind it (and trying to keep up).. just about did me in but I stuck with it.
It turned out to be great therapy, It now seems easy and it really helped me in all other areas of function.

I have found that I constantly had to push a little beyond what I thought I could do no matter what the activity. It also took a lot of repetition of the same tasks for a long time before I could master them and feel comfortable doing them.

As i always tell others....always be safe!!!
I ended up breaking my back trying to Slalom Water Ski again...it hurt a lot !!
I pushed a little too hard and I learned a valuable lesson about safety and being more cautious about what I tried.

Is there certain things you have tried to do but are unable?

 
Old 09-28-2012, 04:28 PM   #23
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Smile Re: Bilateral Loss

What is BVL exactly? I have dizziness 24/7 and have been like this for almost 5 years - Nov.27, 2007. I walk with a cane and sometimes with a walker, depending on how bad it is. No Dr. or specialist I've seen has been able to tell me exactly what it is. I've gone thru more testing than I can count. I am unable to drive anymore - afraid of not being able to control what I'm doing while dizzy. I was, for a long time, able to go out and walk by myself but the dizziness has gotten worse so now I don't want to take a chance going out alone. I have to say the "invisable" part is hard. I too walk like a drunken soldier and have heard people in stores look at me like I am drunk. No one really understands exactly what we are going thru. I tell them to imagine being on a playground merry-go-round going round and rouns, then someone stops it very quickly - that's how I feel all the time. I'm glad to have found this site and to know that others are going thru the same thing altho I wish none of us were. Thanks for letting me ramble on.

 
Old 09-29-2012, 08:15 AM   #24
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Re: Bilateral Loss

BVL stands for Bilateral Vestibular Failure.
This means the balance function of your inner ears on both sides has ceased to function.

If you have been through a lot of testing they should have been able to evaluate your inner ear function.

Have you checked out Mal de debarquement syndrome?

 
Old 03-03-2013, 08:53 PM   #25
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Re: Bilateral Loss

Hi MBK

It was more of a slow process for the oscillopsia to get to the point where it was no longer an issue.
The first 2 years the oscillopsia would vary in intensity week to week/day to day. I would go through several weeks where it would really start to improve then I would relapse for a few days or even a week.
I would say that after about 3 years the oscillopsia had diminished to the point where it would only occasionally be bothersome.
Kind of hard to describe really. Occasionally I will still notice slight oscillopsia but it is usually at night time only.
However...everyone adapts at different rates. Oscillopsia diminishes as your brain learns to compensate without signals from the inner ear.
Your oscillopsia may diminish quicker than mine did.
I know what you are going through, oscillopsia is an irritating condition that defies description. If you are jogging already then you are off to a great start. For the first year I had trouble just walking !!

 
Old 03-04-2013, 08:31 PM   #26
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Re: Bilateral Loss

manybikes, do you have any symptoms now that effect your day-to-day life? I have to say, I'm quite inspired by how you approached this condition by challenging yourself as much as you could at each step along the way.

Also, when you broke your back trying to get back to slalom skiing, how long was that recovery? Did you find that that recoup time had a negative effect on your BVL recovery?

 
Old 03-04-2013, 09:38 PM   #27
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Re: Bilateral Loss

Hi Surfafrica

I no longer have symptoms that have any real effect my everyday life. Keep in mind that my everyday life does not involve being a roofer, acrobat or tight rope walker..just kidding. But really, I seldom run into situations that would give me any problems... but then again I have probably learned to avoid a lot of situations that would give me problems.
This last weekend I went on a desert off road run on my motorcycle, this does not mean that everyone with my condition can do this activity. Please be safe and never do any activity that you are not 100% confident in doing (I cannot stress this enough)

Breaking my back is a good example...(I actually fractured 2 vertebrae). Yes, I did recover but my back is permanently damaged and I now have to be very careful in any physical activity I do. Did it hurt?...you bet it did.. and it still does occasionally. I simply pushed too hard and at the time I was no where near ready to go back to that particular activity, it was a hard lesson to learn.
To answer your original question, no, it did not effect my recovery/adaptation but it did have a profound effect on how I approached re-learning many activities.
Push yourself to improve but always be safe and be prepared to accept that there may be certain activities that you will never be able to do again.
Now instead of slalom skiing I hydro foil ski, not the same as slalom but hey..I'm still on the water having fun.

Last edited by manybikes; 03-04-2013 at 10:03 PM.

 
Old 03-05-2013, 07:18 AM   #28
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Re: Bilateral Loss

As far as I know there is no known cure for BVL . There is considerable research into the possibility of regenerating the nerves (or hairs) in the inner ear. Apparently they have been able to regenerate these cells in mice so there is hope out there for an actual cure.
Researchers are also making great strides in developing an inner ear prosthesis, basically an electronic replacement. I believe they have even started clinical trials for the prosthesis.
There is hope out there folks!

 
Old 03-05-2013, 02:39 PM   #29
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Re: Bilateral Loss

Many thanks manybikes.

I'm 39 and have full UVL. I'm one year in. I was really active before (hockey, surfing, skiing, etc) and it flattened me. I've gotten to the point where I'm starting to re-introduce myself to some of the activities. I started hockey in December, and found major improvements into January. It's still strange and I've adapted my play (good excuse to stay out of the corners!), but I can do it and it's fun. And I think all the motion and head movement is really good for my compensation.

Ironically, at the end of January, I was going to watch a hockey game (Canucks) and I fell on some stairs (not v-loss or beer induced....I simply tripped with my hands in my pocket) and really wrecked my shoulder (bicep tendon). The injury has put me out of activity. It's slowly recovering, but man, the set-back really was hard on me psychologically as it felt like it really stopped all the great momentum I was feeling with the brain compensation. I was curious to hear about your experience with an injury while compensating. Thanks for sharing. Again, I have to say, hearing how you approached your BVL has given me a kick in the butt to keep working at my rehab exercises and to keep challenging myself (safely).

WPDMBK, as manybikes said, there is no cure for this. We can hope for it in our lifetime, but I'm not counting on it. I think it's best to take manybikes' (and many others) lead and work on compensating as best as we can. I'm choosing to stay dedicated to vestibular rehab therapy (VRT) and to try to challenge myself as much as I can in day to day life. My review of the literature, as well as talking with my ENT and physiotherapist, has given me confidence that VRT has a good chance at speeding up compensation.

The brain can do amazing things. Manybikes' compensation is evidence of that. I also read in the literature the story of a man from Italy who suffered BVL when he was a kid. He was never diagnosed and lived his entire adult life without evening knowing he was BVL. 50 years later, they discovered he was BVL, but all his tests showed no difference from people with full functioning vestibular systems. His brain had completely adapted. Being older, it'll be harder for us, but it goes to show how good the brain can be at adapting.

 
Old 03-06-2013, 07:01 AM   #30
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Re: Bilateral Loss

Hey Surfafrica

You are definitely on the right track for recovery/adaptation. I also did a considerable amount of VRT but nothing beats just getting back to everyday living to give your VRT that extra super boost.
If you are a Canucks fan that could have been the reason for your fall !!... lol.

Anyway, sorry to hear about your injury but that will heal. Playing hockey would be an excellent adaptation exercise, lots of head turning, spinning...it forces you to do multiple tasks which is what you want to concentrate on.

You mentioned you are UVL, how strong is the side that is still functioning?

 
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