Thanks for asking. I went to see a different neurologist, explained my symptoms and he said I don’t fit the classic VM/MAV patient. He said that VM is episodic and my symptoms are continuous so that’s different. I sometimes find that if I immerse myself in a task (distraction), I don’t feel the rocking/swaying. I tried to explain to my doc that if I lie down, I immediately feel like floating sensation. He said that it could be I’m thinking too much but in fact, I try not to think of anything when I’m sleeping!
So in sum, he said it was anxiety/stress related.
I guess I’m back to square one…I was on propanolol for about two weeks and had taken flunarizine for a week. It seemed to have helped a bit.
Now I am unmedicated but on a migraine free diet. I could function normally almost 80-90% of the time. I still have the floating whenever I sleep and sometimes the weird gravitational pulls when walking but that waxes and wanes.
I am wondering whether I should see Dr. H in Chicago. I am tired of docs saying I’m “ok” when all physical tests are fine but I don’t feel normal. I mean there is no blood test for VM/MAV anyway.