Migraine

Hi I am a newbie
Does anyone out there have comments on Topamax?
I was on it once before but gave up because of
the side effects. Am desperate so thought I would
try it again. Thanks
Trish

Hi,
I used topomax for 3 months less than a year ago. It didn't help my migraines but I know it works for lots of people.
I felt like the side effects went away after the second month for the most part. I still had occasional numbness in my fingers, lips and feet but it didn't bother me too much. I also think it made me more sensitive to odors but I don't know that for sure.
There are lots of other meds like Topomax out there. I have tried Depakote and Keppra and think Topomax had the least negative side effects.
Sarah

I tried it for a very short time. It worked, but it gave me heart palpitations, which is an unusual side effect.

Welcome Trish!

Oh Topamax. I feel like sometimes it's a torrid love affair.

Started out loving it, then hated it for a while because I felt it stopped working. Adding some Amitriptyline to it and ta da! Working again!

So I love it right now. I just went 18 days with no migraine which is quite wonderful for me. I was getting at least one a week, even with the Topamax.

Still get the tingles sometimes. Had some cognative issues when I started it, but I think that has gone by the wayside now.

If it worked for you before, why not give it another go? When I started back on it my doctor said it may not effect you the same way twice - he was right.

Good luck with whatever you decide!

And welcome again!

I tried it for about 2 weeks, but the side effects drove me insane. (cognitive disfunction, menstural spotting, and I swear it was messing with my lexapro, though I'll admit that might have just been my paranoia)

If you didn't react well to it before, I can't imagine you would react well to it now.

Thanks to everyone who answered my question! As a newbie I appreciate the feedback. Today my dose of Topamax goes up 25 mg.again. So we will see if I can still remember my name tomorrow!
Trish

Hi Trish,

Have you seen our information on topamax? It is important to split the dose to get the full benefit of this drug.

When I started using Topamax almost a year ago, I was told by my doctor about the numbness and tingling, being the most irritating side effect. She didn't say ANYTHING about weight loss, and me, not really looking it up to it's fullest extent, overlooked that. 4 months later, I went from 143 pounds to 115 pounds. Believe me, at 5 ft tall, I am NOT complaining ). As far as my migraines, I have gone from having them 3-4 times per week for 8 years, to 3 or 4 times per month. I am so thankful for this medication that I can deal with the slight memory impairment, tingling, and oh, I haven't had a soda in a year either because it tastes like cola syrup. YUCK! I say if you can deal with the side effects, go ahead and give it another try. Everyone's system is different, but maybe this time, you'll be one of the lucky ones!

I hated Topamax!
They kept increasing it and the final dose I was on was 400mg daily. I had horrible side effects and I STILL have residual effects from it and it has been about 7 years since I took it.
I feel like I still have "burnt" places in my memory. Many things during the time I was taking it I just don't remember. I had horrible problems w/ word finding. I could see what I wanted to say and could describe it but never come up with the word. And I still do this sometimes.
But I do think that my issues w/ topamax are some of the worst I have heard. It is always worth a shot to take and see how you do. I have a friend who takes it and has not real side effects from it.

I've been on 25 mg. of Topamax for 7 weeks now. It's decreased my migraine frequency by 66% and the number of abortive meds I need by 75%. Needless to say, I'm ecstatic! A little "Topa tingle" occasionally in my hands, get sleepy in front of the TV at night BUT
along with far fewer migraines, my blood pressure which was high also dropped to normal range. I question whether it's making me a tad bit weepy/sad at times which I don't like and am fighting against (but *not* depression or deep sadness). Trying very hard to stay at the low dose so as to minimize any potentially bad side effects, especially with cognition.

Some time prior to this, I was on Zonegran for 1 1/2 years. I had *major* neurological problems at the end which my GP feels had to have been related to that drug--range-of-motion in my arms became so limited, my husband had to help dress me, severe pain when moving arms and knees, etc. I'd worked my way up to 200 mg. on the Zonegran which, in my particular case, I think was a bad thing--I'm one of those people who seem to do better on a lower dose. (After 6 months off the drug, the neurological problems slowly faded away on their own and I am back to normal, thank goodness!!)

Hi Nancy,
Thanks for the reply. My Dr. had me on 25 mg.at bedtime for the first 2 weeks then increase to 50mg. a day. We are going to see if this will do the job since the higher dose drove me crazy last time. With a family to run I can't be fuzzy. My tongue is already buzzed and the hand numbness is back. I have to really think to get my spelling correct ect.. I am hoping the side effects will go away after a while. It is great to hear from people who have cut down from 3 or 4 migraines a week to that a month! It would be worth a little inconvenience. Thanks ALL
Trish

Welcome to the forum!

I couldn't tolerate Topamax at all--severe insomnia. But everyone's body is different. I always say the only thing scarier than the potential side effects of a drug is the possibility of missing a drug that could have helped you because you were afraid to take it.

Hi Nancy,

I was on 100 mg of topamax for about 8 weeks. It was helping my migraines greatly, but I was having some issues with numbness in my feet and when I reviewed those symptoms with my doctor she did not like them and topamax and I are no longer a couple. It was working, but the side effects were not good. It's important to mention all side effects, even if you feel you can deal with them.

Cindy

I'm currently on my third trial of Topamax. The first time I used it, I did with great success (Oct 2003 - May 2006). I had some side effects that were bothersome at first but went away - drowsiness, dizziness. I had some that gradually built up over time, but weren't so bothersome that I ever even tied them to the Topa until I discontinued it - minor cognitive side effects including bad short-term memory, occasionally "losing" words; and soda tasted metallic. Before the Topa, I had chronic daily headache and frequent migraines (1-2 per week) and was about to withdraw from college for health reasons. Within 2 weeks of starting the Topa, the headaches and migraines virtually disappeared. I averaged 1-2 migraines a *semester*, and that was during exams. Topamax is the reason I finished college on time. I was on a low dose, 50 mg at night.

I tried discontinuing it to see if I still needed it. And the answer was yes, yes I do. Unfortunately, the second time I tried it, over a period of 2 months including a *very* slow titration from 15 to 50 mg, it didn't work. So my neuro had me try another preventive. At the time, I didn't know I hadn't given it enough time to work, and I was less willing to put up with side effects.

I'm currently on my third trial of Topa. I started it 3.5 weeks ago, and this time around the side effects are different. The dizziness and drowsiness really only stuck around the first week and are mostly gone. The cognitive side effects have hit much harder and faster than in the past. (I'm also taking another preventive, nortriptyline, so that may be part of the reason.) I'm also getting the "Topa tingle" in my arms and legs intermittently throughout the day, especially at night after I take it, which I had never had before. Tonight I'll be upping my dose to 75 mg; so far I haven't seen any changes in my migraine pattern from the Topa.

So, all of that is to say that the side effects you've had from a particular drug, and even your reaction to it, definitely can change over time. I'm willing to give the Topa a fair trial since I had such great success with it a few years ago. Hope this helps.

Welcome Jen. It sounds like you've had fantastic results from Topamax.