View Single Post
Old 07-27-2011, 04:01 PM   #8
manybikes manybikes is offline
Senior Member
(male)
 
Join Date: Jul 2007
Location: North America
Posts: 102
manybikes HB Usermanybikes HB User
Re: Bilateral hypofunction

Quote:
Originally Posted by uga View Post
Manybikes

When you were loosing function did you have vertigo? I did and I can honestly say total loss off function is better than bad function and vertigo, what do you think?

I will have to go to the gym and use the treadmill, do you feel after all these years you are still improving or do you feel you have reached a plateau?

Is there ever a time the oscillopsia still bothers you or is it pretty much a non factor now?

Thanks manybikes,

I just get impatient nd now realize this is a long gradual process that takes time and practice. I guess it is sort of like having both balance nerves cut in a way or two labyrinthdectomies only this is a natural laby.

You are a godsend, my appreciation for you is immense.
Hi Uga:

Yes, when I first started losing function I would get violent but short bursts of vertigo. I agree with you, the sudden shots of vertigo while walking or driving were very hard to deal with. Some people who have Menieres will get vertigo that last for days, given the choice, what I have now is preferable. Preferably I would like to have no inner ear issues whatsoever !!

Yes, every year I still continue to improve. However, because the improvements come slowly it is often hard to tell until you look back to where you started...it is then that you realize just how far you have progressed. I do activities now that not long ago I thought were gone forever.
I can honestly say I have my life back..not perfect but good enough.
I know all too well the place that you are at right now Uga and it is real hard to deal with. Very few people can understand just how cruel our condition can be, it is an invisible affliction that is almost impossible to describe to people with functioning inner ears.

You will experience plateaus and relapses on your journey to adapt and these will cause you great frustration, I had times where I was literally brought to tears.
You may go through a period of great improvement then suddenly relapse, sometimes for weeks or months. I never have been able to figure out what factors come into play that can cause a relapse...just one of the mysteries of our very rare condition.

I now have very very mild oscillopsia, there are periods of time where it almost disappears. If I do have a relapse (very rarely now) I notice it but it is mild enough that it really doesn't bother me much. I can walk down the street and read signs and recognize faces etc. without stopping. The oscillopsia is one of the toughest effects to deal with but it does get better, much better, pretty much a non factor for me now.

I remember when I first started on the treadmill I had to hang on to the side rails and could only look straight ahead. Now I run on the treadmill and don't even think about the side rails, and I watch the TV on the wall at the same time (I can even read the running script on CNN !)
I would practise by walking on the treadmill and taking my hands off the rails. Once you master that you can progress by walking the treadmill and turning your head to look left or right. I also bought one of those half dome type balance balls, I practise standing on that while slowly turning my head back and forth without losing balance.
I still also practise putting one foot in front of the other and closing my eyes to see how long I can stand (be near a wall when you first try that one)
You will find some of these exercises pretty difficult at first but you have to hang in there and be persistant. The brain is lazy and really doesn't want to deal with all the extra work load.

You really have to push yourself to do things that no longer feel natural or comfortable but the payoff is great.
The only thing that other people notice different about me now is that my head will sometimes have a mild shake if I spend too much time looking at the computer or while trying to read small print (I do need glasses but don't like wearing them)

You are certainly welcome Uga, just let me know anyway I can help.