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BPPV/Migraine Equivalent

Name: Lynda Bouyea
Email: scotland@westelcom.com
Date: 07 May 2001
Time: 10:56:54
Remote Name: 12.23.26.27

Story

This is an excellent web site! I don't know about you "guys", but are any of you finding it difficult to get others to believe you really have a disabling condition? On the rare occasions when I can get out with my wonderful husband, people see me and, I'm sure, think, "... Sure, she's faking. She looks so good." As for SSI, I've gotten the royal run-a-round.

I've had what the doctors are calling BPPV or migraine equivalent for nine years -- since 1992. Symptoms: constant dizziness with many attacks of vertigo and fatigue (probably from so many meds). Weird feeling all over my body (as though my nerves were short circuiting) that completely puts me out of commission for days and even weeks and months at a time. I've had ALL the tests: MRI, CAT Scan, EP's, ENG, full blood chems, EKG. The only person who could identify with the over-all horrible feelings I get is a gentleman with MS. I do not not have MS, just many of the symptoms! Amitriptyline, Diazapam, Meclizine (plus others that made the condition worse): These help to take the edge off, some, but not much relief. I had a remission from 1995 to 1999 where I had only the constant dizziness. Then, in the fall of 1999, it came back full force. Would like to get my life back. Was working on my Karate brown belt, now can not function normally or even drive down the street: I, who, drove all over the Scottish Highlands in 1989 and could maneuver in Montreal -- the Kamaksi (sic) capital of the world -- next to Rome, Italy!

Good to know there's a support group. I run into people all the time who say, "Oh, ya, I had the same thing". Ya, indeed. No one knows what we go through. Not life threatening but, certainly, very life limiting!

Have seen the top neurologist in Burlington, Vt., several others at the Fletcher-Allen Medical Center and another one late in 1999. Still the same old-same old response: BPPV/Migraine Equivalent. I did even tried the suggeston I go to a Ear-Nose-Throat specialist and try the Epley-Semont maneuvers. His reply: "Oh. You got your information on some web site (quackery to him!). You're 'window shopping'." Patronizing SOB. Thank you Dr. $%&*^%! Since I WAS diagnosed with BPPV, I would think this was a legitimate question.

Guess we have to keep some sense of humor -- knowing we're not alone out there.

I think frustration is our biggest challenge. From what I've seen, this "hits" mainly intelligent people. A superintendent of schools in Vermont "came down" with this in 1992 (he had the same neurologist as I did -- same condition). And, in 1992, he had a relapse (seems to be cyclical in nature). This time he had to retire on total disability.

This is NOT a "pity party" on my part. I know you're going through the same thing -- some longer than mine. Like all of you, I wish there were out there some "movie star" or "high profile" person who would take up our cause! We need answers -- AND, A LASTING, WORKABLE TREATMENT (cure is too much to hope for) -- as to why??? Ours is not a popular cause, ergo, little research on the horizon.

Copyright © 2001 Lynda Bouyea. All rights reserved.

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Name: vasya
Email: pinta@gagmail.com
Date: 06 Apr 2008
Time: 09:52:01
Remote Name: 195.225.178.21

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Name: slava
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Date: 08 Apr 2008
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Name: egor
Email: beta@gagmail.com
Date: 02 Apr 2008
Time: 23:57:57
Remote Name: 195.225.178.21

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