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Inner Ear Disorders Message Board


Inner Ear Disorders Board Index


Re: For Scott
Oct 17, 2005
Hi Scott,
I, too, like hearing everyone else's story - though every case is unique, I think there are sometimes enough similarities in our conditions that really help us along this journey back to vestibular "wholeness!" In fact, you may remember a post where you encouraged me to stop taking my nightly dose of Restoril. (There had been a discussion about the benzodiazepines.... and on that post (or referring web site) I made the discovery that here I was, trying to recover while at the same time taking 30 mg. of the stuff every night!!!!) Just thought I'd let you know that I took a withdrawal timetable I found online and followed it - after switching from the Restoril to the Valium (due to the longer-half life being more gentle), I was then able to cut the dose each week... now down to 2.5 mg. nightly! Within a month I should be off completely. Hurray!

Here's where I stand with my VN in a nutshell: Spinning and disequilbrium that began last January - a few weeks into that 1 day of true upside-down vertigo. That resolved quickly and back to the continual disequilibrium I went. Life was doable, I was getting read to go overseas, so I put off being seen by the dr. until after the trip. In the meantime managed with Dramamine and Meclazine. Once home from the trip, jet lag and a horrible cold hit... so that meant all my activity stopped as well.... and that's when I became completely disabled by this stuff. (I personally think I decomped... but the drs. say there's no way to prove it.) ENG showed R vest. damage, no loss of hearing - referral to VRT, which I began in June.

It [I]is [/I] interesting to live your physical issues out in the public eye. (I think I get most tired of people saying, "You're all better!" when they see me out and about and trying to get on with living - I never hesitate to tell them, "Come visit the inside of my head for 5 minutes and tell me just how much 'better' I am!!" ;) ) Going through the motions of life while feeling SO horrible on the inside has been one of the hardest aspects of this whole thing. I'm back to teaching several classes now, and that is very challenging, to say the least. But, I know I have to do it, regardless.

Of the several people I've run into that sound as if they definitely have encountered some sort of vestibular disorder, I have found something interesting - something that makes me think that perhaps more people are walking around with in some sort of uncompensated state than the medical community might suspect. Three, in particular, are still having problems - particularly with the visual aspect. After hearing their stories about what they experienced initially (and the residual symptoms they have been left with now), I asked each one to do a simple VOR exercise right then and there - one of the ones that was almost unbearable for me to do in the beginning. Sure enough, each one of them had extreme difficulty doing it!!! And each one of them had been dismissed by his/her doctor, told to go home, take an over-the-counter vest. supp. and wait it out. They had no idea there might be more they could be doing to get better. So there I am, dispensing vestibular exercise routines for them.... maybe I should open up a lay-VRT clinic ;) !!!! Well, one thing I'm convinced of - many of us have learned more about vestibular disorders and treatment than many of our well-intentioned doctors!!!

Hope you're still on the mend, Scott. Was so glad to hear that your overseas trip went relatively well, and haven't seen you much on the boards, so was hoping that was a good sign! (I think we all assume that, don't we? When you start feeling better, you get busier and have less time to chat on the board!) I know it has been a particularly grueling and long battle for you, and I do so hope that you are feeling more and more normal as the months go by.

Take care,
Robin





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