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This popped up on my Facebook feed today, and I thought it apt. MG

I did this as a clinical trial in my area. I lasted just about 2 years and had it removed. It may have helped with a few clusters but I do not think my placement was correct so it had poor connectivity. Now I am left with numbness feeling in my upper lip, roof of my mouth and nostril on that side of my face. Lost a lot of my sense of smell and taste. Would I try it again? Probably if I was in the same place mentally I was when I signed up for the study just before I found this site. BOF.. No barcode but you do get a little card to get you through a meddle detector

Hi Henrithree, Topomax is a tough one. (We call it Topiramate here in the UK, so you may catch me using that name, same drug though). My clusters where pretty bad when my doc started me on it. It was the 'last resort' after a long list of other things that didn't work. I was told about 50% of people that try it can tolerate it, and tolerate is the right word. No one enjoys it. I was, apparently, one of those 50%, but it still took me 3 months to adjust to the side affects. Some good, some bad. Here's what I remember... Every time I altered my dose, I felt like I was on a roller coaster for about 24 hours. I once remember being afraid to stand up at my desk at work because I felt like I was on a non-stop roller coaster for 45 minutes, and knew if I stood up I'd fall over. Coke tasted like saw dust. Literally. I couldn't stand the taste of McDonalds, or most fast foods (not a particularly bad thing) I'd get about 1/3 of the way through a meal, and just get bored with food and stop eating. ( l lost a bit of unneeded weight, which eventually was the main reason I stayed on it so long) When I was tired, I'd get REALLY bad double vision. Have you ever dragged a window across your computer screen when the memory couldn't handle it, and it creates a dozen echos of the window, or image, on the screen? That's what this double vision was like with any vertical straight line and lights. If I turned my head, all the doors in the room would echo, and where 1 door was, I'd see 10. It was worse driving at night. Car lights, tail lights, street signs and trees would all echo like that. Then there was the general grogginess and just being out of it, numb emotions, tired a lot. And what did I get for all this? I was getting hit 3-5 times a week before starting on Topiramate, when I finally came off it, I was getting 2-5 severe attacks a day every 2-3 days, each lasting 2-4 hours. My clusters increased 10 fold. That's when I put a date in my calendar on which I was going to exit planet Earth. That's also when I created an account on this forum. That was 8 years ago. The methods you'll find on this forum actually work and won't screw with your head. Just my personal experience with it all. I'm a chronic cluster head, have had clusters since 2007, all year round. But my clusters now last 30 seconds to a few minutes, might hit a KIP3, or a KIP 5 if it's a bad one, and I get 1-4 a month. To be honest, I don't really notice them. MG