I'd love to talk to others about this! I started it about three weeks ago. Sorry if this post is long.
I've had migraines for about 30 years, to varying degrees, usually several days a month, sometimes more sometimes less. Usually hormonal, but also with some other triggers.
Anyway about a year ago I had an MRI just as a routine measure because they seemed to be getting a little worse and just to rule out any other causes. They found a small cyst on the left side of my brain. Good news is it hasn't changed at all in the year so doesn't seem to be a growing tumor of any kind. Bad news is it's in the part of my brain associated with seizure activity. I've NEVER had a seizure that I can recognize. My regular neurologist sent me to an even more specialized neuro-oncologist though who ordered EEGs and did see some irregular activity.
Because seizures and migraines can be so closely tied in together he wanted to start me on Topamax to maybe control the migraines and also prevent any possibility of seizure in the future. I read all the horrible side effects be decided to give it a shot. He started me on 50 mg once a day for a week, then 50 mg twice a day for a week, then 50 mg once a day/100 mg once a day for a week, then supposed to be 100 mg/twice a day. With each dose I've felt horrible for the first few days. Nauseous, bad taste in my mouth, foggy, "loopy" is what I call it, all around drugged feeling, tired. Just all around yucky. Then I'd have a couple days where it wasn't so bad, just in time to up it to the next dose. Few days of feeling horrible, then a couple not so bad days, etc. Right now I'm on on the 1 pill in the morning, 2 pills at night and just can't adjust to it. I've never gotten to the full dose. Just feel like I'm walking around in a daze all the time. Feel like I'm a step slow.
Up side is I've only had one headache in all this time. So maybe it is working for that. But I can't go around feeling like this all the time. I have just put a call in to the doctor's office and am waiting to hear back about what we can do, how long it typically takes to adjust, whether I can cut back on the dose, etc., etc.
I'm on the generic topirimate. Does anyone notice a difference between that and the actual Topamax. I also get a tingling in my hands and feet sometimes. I could live with that. It's the other stuff I can't.