at the risk of completely jinxing everything, I just thought I’d report that the Pizotifen appears to be doing it again for me. My 24/7 dizziness is sometimes barely noticeable lately (the past 2/3 weeks)!!
For those that don’t know, I’ve had pretty much 24/7 disequilibrium/false motion/dizziness since Sep 2008. My one proper respite prior to this was when my GP put me on Pizotifen in the early days, and after 3 weeks or so at 1mg, I was able to forget about the dizziness. Then I was advised to come off it as a precautionary measure, due to an atrial fibrillation episode (it wasn’t the Pizotifen, just my heart doing what it’s prone to do). When I later returned to the Piz (after 3 months or so), it had lost its magic, for reasons I cannot explain (I was only at about 60% or so).
So, I struggled with Topamax for a long time (well over a year, I’d have to check), before eventually seeing Dr. S. He put me on Gabapentin, as well as the Topamax, and I had a brief respite and period of calmer MAV, before apparently over-doing it too soon (daring to start living again, and doing things in the evenings). So, when I couldn’t cover from the relapse, we dropped the Topamax and started the Pizotifen. And here I am!
I’m too MAV wise now to dare to hope that this will last forever - I will, however, guard against the trap of over-doing things too soon. Hopefully, I’ll just stay this way, keeping all variables as stable as possible, and see what happens a few months down the line. Fingers crossed!
Anyway, I wanted to post this just to give fellow strugglers some hope. It looks like my med is indeed Pizotifen (I’d wager I could come of the Gabapentin and probably still be OK, since I believe most if not all of the work is being done by the Piz). But…one step at a time…
Best wishes to all,