I was just thinking to myself today, how to make a positive out of a negative situation.
We have all spent so much time researching and investigating our VM that we are pretty much experts in our field :lol: At times, it seems we know more than the so called ‘experts’, the leaders in the field of neurology etc…
Wouldn’t it be great if one of the neuro’s we dealt with had also suffered this horrendous condition so that they to could also properly empathise with us and understand our plight.
I am sure it would take a long time to gain the qualifications and expertise for the vast spectrum of illnesses which can cause dizziness but at least we have a vested interest in research and cures / treatments for the condition.
Nice idea - the stress of the sudying might tip the MAV over the edge though!?
I thought someone said that Tom Boisimier (DizzyTimes) was once a sufferer…?
Actually thought about it for about 2 seconds. Even had the Dr. who administered my Eng attempt to encourage me. If I wasn’t so darn old I might even do it. I have my vestibular migraine under control now if I avoid my triggers. I May still end up going to graduate school to get away from my dreaded computer job as I feel it is the one thing still keeping me sick. I really would like to get into a field where I can help people with chronic illiness lead more productive lives.
If I remember correctly, Tom B. once told us (on another forum, actually a mailing list) that he had secondary endolymphatic hydrops–but I might be wrong about that. But yes, he’s had the dizzy experience himself.
I also remember that on that mailing list, probably 10 or more years ago, I was astounded to see him say once that he thought many of the undiagnosed dizzy people there actually had MAV. Now I am certain he was right! He was/is a wonderful source of good scientific information, and while of course he never could nor would diagnose anyone over the Internet, his answers to general questions about testing, diagnoses, and treatment led MANY people to a correct diagnosis and getting their life back. I saw it happen. He’s a hero.
