Hi all
I have bilateral vestibular function. According to the rotary chair and caloric tests I have virtually nothing left in either ear.
Started about 3 years ago with the odd bit of dizziness until last June I lost everything. During this slow killing of my inner ears numerous doctors diagnosed everything from depression, anxiety through to "you're just getting old".....uh....I'm 49.
Finally after both sides died they were able to definately state what my problem was. Whether this could have been stopped is anybody's guess.
Cause...unknown.
Anyway, I will stop before I go into a full blown diatribe about my most unpleasant journey.
Is anyone else out there a full bilateral?
I am coping very well, I think, considering my condition.
I walk pretty much like normal and can drive without too much discomfort.
After a year I can take my motorcycle on short rides (only on the good days).
This however is not at all easy.
Oscillopsia is still a problem, does this ever go away? I have heard that it does but it takes 1 to 2 years before it diminishes to a point that is bearable.
Would appreciate hearing from anyone who is also bilateral. Could use some advice, pointers or an address of a place that sells Jack Daniels at half price.
Oscillopscia is hard even for unilateral sufferers like most of the people in here, I'm over the two year mark and still dealing with that stuff.
And as far as I know a complete bilateral vestibular loss, is mostly related to ototoxicity, mainly due to ototoxic substance like some antibiotics, and it affects both your balance and hearing(do you have hearing problems too?) so I wonder what your doctors said to you about this.
But besides this cause a full bilateral case is somehow rare, you might find some bilateral sufferers to with lost function to some extent, and most of the symptoms are similar.
G luck with your case, as it stands true for all cases, keep it up!, and you'll get better.
There are lots of causes of total bilateral vestibular dysfunction - if you're at all interested its best to see the folks who research this .. geneticists/neurotologists.. Baloh, Jen etc. at UCLA are very good in this area. They have reported a number of genes associated with total bilateral vestibular loss.
Are there any others in the family tree who have suffered the same issue? Also, if you have migraine, there are a few migraine syndromes that result in bilateral vestibular dysfunction.
I have read that they are getting closer to finding a possible cure through gene therapy.
This may be a few years down the road but I will keep the faith.
It is a very difficult disease to deal with.
Apparently unilateral can be just as bad as bilateral.
I am currently trying the brainport balance device. It does make a difference in many aspects of balance.
I guess the best thing for oscillopsia is the VRT exercises. I stopped doing them about 6 months ago but have restarted an am determined to beat this.
