Topamax/Topirimate

[Jeniferdwn]

Does anyone else take this for headaches, weight loss, anxiety or seizures? I have been taking it for several years and the side effects are awful. I wanted to talk to others that have taken or are taking it.

 

[mommasita]

I take it. I have for several years as well. I have never honestly had what others refer to as bad sides. Sorry to hear you do. Is it the dopey feelings, foggy?

I take it for headaches after Chiari surgery, since 2010.

 

[littleblackegg]

I took it for several years as a mood stabilizer. I had lots of trouble with word-finding, memory, and feeling spaced-out.

 

[Jeniferdwn]

I don't have the dopey feeling so much as I can't remember things. I have turned down the wrong road to get to work, I forget everything I don't write down, I have trouble finding words. It's awful. I was afraid I was experiencing the symptoms of early alzheimers or something. I'm glad to know it's just the meds, but it's so scary to know I've lost so many memories and will never get them back. I stopped taking it and I had the worst headaches I've ever had for about 3 days, but so far, the last 2 days, I haven't had one. I had no idea about the side effects!

 

[VillainFavs]

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.

 

[tiggergal15]

Sorry you are having such a rough time! Have you talked to your doctor about this? The symptoms you mention could be from the med or not. Also just stopping the med could have caused your body some harm...you didn't mention whether your doctor recommended stopping. Your doctor could also help find an alternative for you.Hope you are feeling better!

 

[Jeniferdwn]

taking the medicine caused harm too. I did have the withdrawals issues such as intense headaches, but I've done withdrawal before so I just went through it.

I always had that "dumb" feeling. I was foggy. Now I feel much more alert. There are other meds that you could try for headaches. I haven't had migraines since stopping the medicine except the withdrawal headaches and I honestly could hardly stand that one. I hope I will get back some of my memory so I can start remembering things again!!

 

[4HOLIDAYS]

I took it for 2 yrs for migraines until I could not take it anymore. I was on only 25 mg a day. My issues were what the dr called"rare" . I was aggited, gave my hands the shakes, hard to sleep at all-would be semi awake-kind of like I could watch an entire movie in my head instead of sleeping, then when asleep it was very hard to wake, foddy, forgot tons of words...I was told you have to wean yourself off , so I did.

I will say I had few migraines while taking it. I have (or so the thinking is) vestibular or basal migraines, if bad I get bad vertigo-lasts for weeks. I was good for over a yr but last yr had one in April that knocked the stuffing out of me-could barely move for weeks. Then again in August-not as bad but not good. Pretty sure both were brought on by stress-bit of a rough patch. I still would rather not take it. I felt horrible while on it.

I know 2 people who have been on it- 1 for yrs and it helps with her migraines, no problems. the other lasted a month.

 

[Paula Sedley-Burke]

I take it for migraines. Been on it now for about 2 years. I take a low dose about 25 mg but I spilt it so 12.5 in the morning and 12.5 in the evening. At first I did feel foggy and I had some cognitive slow down in memory and understanding but my migraines improved so much it is worth it. I was getting 1-3 a week and I haven't had one for months! I think it's a question of seeing if the side effects are worse than what you are taking it for. For me I will trade!

 

[StirlingSilver83]

I have migraines/manieres disease (inner ear disorder that causes me to get very very very dizzy to the point of puking and passing out). I have been on meds since I was 14 for the manieres disease, but recently the meds have not been doing what they are suppose to...I have still been getting dizzy, but not to the severe point like I was before just annoyingly dizzy. Anyways my dr put me on the topamax, bc I do get migraines as well and because I am overweight and he said the topamax was the only migraine med that won't have the side effect of adding weight. Anyways I haven't had or noticed any horrible side effects with the meds. In fact my migraines have pretty much stopped and I am not getting as dizzy as much and I have also lost 50 pounds. I did have some side effects but that was when my topamax ran out and I was without it for about a week. I got a headache everyday and the severity fluctuated and I was feeling dizzy again. Now that I am back on it I am feeling better. I guess everyone's system deals with prescriptions differently though. So sorry that you are having so much trouble on it!

 

[catherines_mama]

I take 100mg daily for migraine I'd say 2 yrs now. Sounds like my side effects are the common ones. Dull, dopey, tingle in hands and feet now and again. I hate it when I have to search for words that are typically right there. I'm a really smart sharp professional. and it makes me feel less at work. But my boss knows of the meds and sides and understands. She says my dull is still great work so okay. I just get frustrated with myself. But I see the difference in how I feel (the headache ) when I don't take it . when I'm out of routine I forget. I hate it.

 

[SGB13]

I have been on it for over 10 years. My dose has changed up and down during that time to what would keep my migraines under control for the lowest dose possible. I am currently on 75mg at bedtime. I feel much less foggy at work with no morning dose. My biggest complaint is the cold and tingling fingers and toes. But I have bad circulation, so it may bother me more than most. It really has been a life saver as far as my migraines go.