My story up until now/introduction

Hello everyone! My name is Amy, and I have been dealing with MAV for 11 years now. Only recently have I been able to put a name to it. I am 32 years old, and I first had symptoms when I was 21. Rocking, quick spins, off balance…all the usual. Visual things set me off like big stores and flourescent lights. Every doctor I saw wrote me off as panic disorder, etc. I did have all the inner ear testing and came out with a slight deficit in my left ear but not enough to be causing all these problems. I eventually went back to being 95% and thats how I was most days until November, when I slowly started to decline again. It was horrible, rocking, nausea, quick spins, tinnitus and ear fullness; I had to be off work for a week. I made myself go back but researched everything I could find until I found this forum. Other people who felt like they were rocking!!! And who were motion sick and made worse by flourescent lights! I actually got a MAV diagnosis. I went on the diet, started topamax which made me sick, then went to nortrip, 10, then 20 mg. Magnesium 500 mg too. I feel better now with the occasional bad day. Just wanted to say hi and thank you, I have learned so much from this forum, you helped end 11 years of questions :slight_smile:

Hi Amy,

Welcome. Your story made my day. If this forum can save just one person from this misery after years of being “out at sea” and help them get their lives back then all of this effort here has been worth it. Imagine not knowing what was wrong with you for 11 years. I’m staggered that no one could peg this for you. But you know now and seem to have it sorted. That’s great.

Cheers … Scott 8)

I second the “this forum has really helped me” sentiment. Even though I have found a specialist (Halmagyi) who “gets” this stuff and who diagnosed me, of course I’ve only had two or three appointments with him at about 15-30 minutes each. Not nearly enough time to nut out all the MAV madness. Reading of other people’s experiences on this forum and getting advice and support is just terrific.

It also took me almost 10 years to get a diagnosis. To be fair, most doctors barely understand migraine (ie beyond the notion of the “really bad headache”) and MAV has so many similarities (as well as individual variances) with other conditions it can take a while to get the diagnosis. Also, a lot of those other conditions are pretty serious (eg MS) so need to be explored and excluded.

Thanks again Scott and everyone on this board.