Thanks again for your message. Interesting that we had somewhat similar paths, with the vestibular loss and no symptoms for periods of time..My BVL is also idiopathic, so no idea what started it all, what made it stable for years and what made it worse recently...all I know is that it seems still very unstable as I keep on getting the scary vertigo episodes from time to time.
I understand now what you meant by saying it be better to have some function left than none - I think that as long as it is stable, it might indeed be much easier to adapt. I have also read about some people who have it really hard when losing all the function, ending up using a cane or wheelchairs to move around and that is certainly worse...
I do think often about your example as a motivation - I am also very "stubborn" and just refuse to give up. I am keeping myself as active as I can, also using the Brain Port device and just hoping this stabilizes sooner than later (as I think it is the main problem with me now).
So thank you again Manybikes, will keep you posted on how it goes
Originally Posted by manybikes
Good to hear from you!
I wish I could give you and Greg sound advice on whether or not you should retain your remaining function...but I can't.
In my case my history goes back a long time..or so I think. About 30 years ago I contracted Meningitis and shortly thereafter went through a period where I would get the odd shot of vertigo. Back then I was told "it's all in your mind"..yeh right!! I have no idea if I sustained serious inner ear damage from that episode...the Doctors now say it is very possible.
Fast forward 20 years..I start to get the same episodes of short but violent vertigo. These episodes only last less than a year before they stop..they then tell me I am BVL..yikes! This is when the oscillopsia and other fun stuff started to happen.
Now, I did have one Doctor tell me that it is possible that I may have lost a great deal of my function when I had Meningitis but was able to adapt and function very normal for the next 20 years (sound familiar Dizzy?)
Then..who knows what happened that caused the remaining function to...malfunction... and rapidly decline to zero.
This is all speculation guys..the Doctors simply state my loss is "idiopathic" meaning...they simply don't know the cause.
I fully understand what you are both going through. When I still had function but it was malfunctioning, I had absolutely no control over the vertigo, and that is not something that you can adapt to. Please always keep this in mind when I talk about the things I can do now...I no longer get hit with vicious vertigo attacks which makes a difference safety wise (our conditions are a bit different right now)
Having no function is no picnic either, everyone is so different. I have read many stories from others who have not been able to adapt to BVL as well as I have and are having a real hard time with it.
When I say "I wish I had at least some function" I am assuming that because I adapted so well to no function..that even a bit of function would make me even better, this may not be a proper conclusion.
I do not consider myself to be an exceptional individual so I have always felt that "if I can do it, anybody can"..I simply refuse to give in or give up. I wanted more than anything to get my old life back and for the most part I have. Keep in mind that this process can be frustrating and slow. I still constantly strive to improve.
You can only trust in your Doctor for now and see if you can stabilize with the function you have. Keep me posted on your progress.
I hope this helps Dizzy and Greg...anytime you guys need to ask a question or need a little moral support I will be glad to help in anyway I can.