Without Topamax, If I walked more than 10feet in a row without stopping, I would feel like someone was violently shoving me in various directions. I would have to stop, get my bearings, and walk another 10 or so feet and start again. I was afraid to leave my house in fear of having an attack secondary from the 24/7 stuff. My attacks would put me on the ground wherever I am (not Miniere’s) and force me to stay there for 5-10 hours, or be carried/driven back to my bed for that period until the attack resolves. I would have attacks pretty much every day, so much of my day was in bed. I could barely turn my head because it would stir things up, but I could drive because there was no head-turning involved except at stop signs. I just turned very very slowly. No running, no sports, and i couldn’t go ANYWHERE without sunglasses due to the visual intolerance. Navigating a store or a shopping center was impossible.
On topamax, my only restrictions are really fast head movements, the kind that would be involved in sporting events like soccer, football, etc, no roller coasters, but I can go skiing, jet skiing, and I can jog and run again. I can rough house with the kids on the floor (but not get too crazy as they like to go upside down and then things get crazy lol) but I can’t go upside down or do anything like that. Not like I want to, but I just remember a time when I could do ANYTHING. I liked playing sports on the weekends and all that. But that’s still something that will trigger me. That’s why I say I’m at 85-90%, due to those triggers. BUT, I take trips, I haven’t had one of those valsalva-induced attacks since June, and I’m not afraid to go anywhere. I have no visual sensitivity anymore, and I only wear my sunglasses on my 85% days which are not as great as the 90% days. Overall, life is much much better. I also believe that my diet, sleep patterns and vitamin D therapy have a lot to do with my results as well. i’m just glad to be out of the crises. I was in the 24/7 stuff for more than 7 months. Month 7-11 is when the improvements started to really kick in, after 4 full months on Topamax. Thank GOD. Anyway, that’s how things are for me