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Migraine Community MyMigraineConnection Archive of Long or Older Conversations Are Topamax side effects annoying or unhealthy??? Topic Closed|
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Apprentice |
I was started very gradually at 25 mg of Topamax and gradually increased to 50 mg. I started having uncomfortable side effects at 25 mg, but the side effects became extreme at 50 mg. I've complained to my neuro, but they just keep saying (after two months) to stick with it and the side effects might well go away with time. In the meantime, my migraines have not improved.
The worst side effects are a very debilitating memory loss, extreme difficulty with word-finding, if anyone interrupts me I completely forget what I was about to say and cannot remember, I felt stupid and doped up, I'm always sleepy, occasionally I feel slightly dizzy, and the last two weeks my feet have been tingling. The least serious of all the side effects has been a face full of adult acne, so badly that I'm worried my face will scar; I have to see the dermatologist about this and I rarely want to leave the house because it looks terrible. The fatigue is so bad that it has interfered with my family life despite my very best efforts to exercise (despite migraine pain) in an attempt to wake up, as I can't drink more than two cups of caffeine without feeling overly anxious. I've been on narcotics post surgery before and felt MUCH more able to DRIVE than on Topamax. MY QUESTION IS....are these side effects unhealthy (memory loss, tingling feet, dizziness, etc.) or just majorly annoying? Should they be gone by two months? THANKS! |
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Wizard |
Mu guess, as a non-medical professional, is that some of these side affects are just annyong; the tingling and memory problems.
There are some side effects that can affect health, some people have trouble with their eyesight that is serious and need to stop taking it. For me, it caused heart palpitations; most likely not serious, but bad enough that I stopped.
Deb  |
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Apprentice |
I get heart palpitations on occasion, too. I generally feel unwell on the medication. It's a shame because I had hoped it would work, as many migraine preventives cause weight gain and I've tried SO many and SO many combinations over the years. In fact, this was not my first round with Topamax, but has been my longest experience being able to stay with it so far.) I don't think I can take it much longer.
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Apprentice |
I really hate to tell you this and I hope it doesnt scare you, and since every person is different hopefully you wont have this problem.
I took Topamax about 6yrs ago and I think i went as high as 400mg. I still have permanent memory loss of things that happened during the time I took that medicine. It ended up giving me anxiety attacks and I had to quit working as a floor nurse because I was afraid of hurting someone. But I still have blank places in my memory and my new physician said this can be normal with the medicine.  |
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Apprentice |
OH, and my anxiety attacks began as heart palpitations. I had no idea what was going on but ended up I was having full blown panic attacks. And it actually took my PCP a little while to figure it out.
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Apprentice |
I've been on Stupidmax now for 4 years. The highest dosage I was on was 100mgs. I am now down to 50mgs daily. I still suffer from all of the side effects you've mentioned & then some. All are very annoying to me (except for the weight loss of course) but, I am willing to put up with it because it's the only *daily* drug on the market so far that has reduced the frequencies of my migraine attacks. Topamax is actually a drug for the treatment of epilepsy. It really messes w/your brain.  When I asked my Neurologist if the memory loss & loss of words were permenant she was not sure because "at that time" the drug was still rather new for the treatment of migraines. I was thinking of asking to be weaned off of it after the fith year thinking by then there should be another *daily* drug on the market I can try with less annoying side effects but with the same helpful results. However, from reading these postings & everyones remarks I guess I am wishful thinking.  ** Making advanced reservations at the Alzheimers Resting Home** |
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Master |
I've been on Topamax for about 6 months, and I've tolerated it well, with moderate success in helping my migraines. It has helped the intensity and and has also made me more resistant to triggers like weather and crying. I did not have most of the cognitive side effects, but did have problems with sedation and the tingling in my feet. I take 150 mg/day, and for a long time, I only took 50 mg in the morning and the rest at night, because I was in a haze for about 4 hours after my morning dose. But those side effects wore off after about 4 months, and I'm now able to split my dose equally. I have noticed a very slight, but rather annoying effect on my driving, which has not worn off.
Have you tried Zonegran yet? This is another anti-seizure drug that is weight neutral and has a pretty decent side effect profile. A number of people here have had some success with it. I may try it myself at some point if my current regimen doesn't result in some improvement in the next couple months. Robin
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Apprentice |
Thank you, each and every one of you who posted, for your candid and specific replies to my questions.
I find myself so bad at this point (50 mg) that I have to make a concerted effort to complete all but a very brief sentence, in an effort to make sure the sentence is completely correctly; even then it's punctuated with pauses, memory lapses, and many times a complete loss of memory of what I was about to say, never to remember. The remarks regarding whether the memory loss may be permanent are enough to scare me off, particularly since I'm not seeing an improvement in my migraine health. Psychologically I'm really at a point where after trying well in excess of 30+ trials of migraine preventives as well as complementary therapies (Botox, accunpuncture, etc.), my drive to keep pursuing combinations of trials of preventives I've tried before is at its wits end. I look forward to seeing my a new doctor this week recommended personally by a family friend/doctor in my neighborhood who also suffers from migraines and has met with good success under this doctor's care. For what its worth it took forever to find the words to write this. All these replies really meant the world to me. Thank you all for taking the time to reply. |
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Apprentice |
P.S. I forgot (how typical!) to mention a problem I experience on nearly a daily basis. It's not severely troubling, but I didn't have it before Topamax. About once a day or so, I'll have a little bit of loss of balance. If I'm standing in place, I may have to back up and regain my balance. If I'm walking, I may sway in my walking slightly as though I'm drunk, but only for a second (I don't think anyone notices but me.) At first I thought it was just "one of those things," but when it kept occuring I attributed it to the Topamax. I believe this may be the side effect they refer to as ataxia?
I also have noticed my near-sightedness has suddenly turned much worse, to the point where I have to focus and re-focus and look a few times at words at times in order to read them. This is not continual, but occasionally throughout the day. This really alarms me given the visual warnings about Topamax, but when I read about the visual warnings, they seem much more severe. When I said in my previous post that "my drive to keep pursuing combinations of trials of preventive I've tried before is at its wits end" I meant that I've haven't seen ANY results in over 10 years, but I HAVE HAD tons upon tons of terrible side effects. That is what is beginning to bother me so badly. I'm defintely going to taper off Topamax and look forward to seeing my doctor. |
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Master |
Oh yeah, I forgot to mention that side effect, probably because I've always had lousy balance. When I first went on Topamax, my sense of balance got *really* bad. But that one seems to have gotten better, so that I'm left with baseline crappy sense of balance :\
I would encourage you to consult your doctor as you taper off the Topamax, just to be safe. These drugs are powerful and can be unpredictable sometimes. I'm sorry to hear you've had such a hard time. I can only imagine how discouraged and frustated you must feel at this point. Robin |
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Apprentice |
Don't get discouraged by what you see here about preventives. We're the worst of the worst when it comes to treatment for migraine disease. Sufferers whose disease is well contained don't need the support and information we get from this site. You're only seeing info about meds that didn't work or had bad side effects. And the information is from a single, personal experience. We're all different when it comes to effectiveness and side effect.
Gretchen |
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Maven |
goodqueenbess--
Pretty much everything you described is exactly what I experienced when on Topamax. After the first 1 1/2 months on it, I had to taper down because it was so bad. I'm still taking a lower dose 4 months later (while waiting for consults on new therapies to try) but still plan on quitting completely. Once I tapered down to just 25mg per day (just enough to take the edge off my migraines), the memory loss, word problems, confusion, loss of concentration, loss of balance, tiredness, dizziness, pretty much went away. I was only on it a short while, so I can't say what the effects of long-term use are though. Someone else mentioned Zonegran. I just started my first dose of Zonegran yesterday to replace the Topamax. Hopefully it won't be nearly as problematic, and I hear it also tends to have weight loss side effects! Good luck  |
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Apprentice |
Migraineur...I know each person's experiences can be so radically different, but our experiences with Topamax seem a bit similar.
I, too, would like to taper down, but I DID do okay "enough" at 25 mg. My seriously problematic issues didn't start until I hit 50 mg. I had some very annoying side effects even at 25 mg, but not to the point where I felt like this. I've read where some people can respond to even 50 mg per day of Topamax. Probably rare, but it can happen. Perhaps 25 mg of Topamax with another preventive would also work. I look forward to seeing my doctor. Thanks for your note. |
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Maven |
Bella--I orginally did a very slow titration up to 100mg/day on Topamax. When that was too much, I tapered down to 50mg. That was still too problematic (not quite as bad but still bad enough that I couldn't drive a vehicle). At 25mg there are very few side effects, and the migraines are a little less frequent and a little less painful. The 25mg basically keeps my Migranal working most of the time, otherwise I don't have any effective abortive. The higher doses only worked a little better than that for me, not great, but better than baseline. I have heard of Topamax working at small doses for some people, and even if it's just a little, that's something
. Best of luck! michelle |
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Supreme Guru |
Bella,
Some of the potential side effects, including those you list, are more annoying than unhealthy. There are some others such as the potential visual side effects and decrease in sweating, that can be unhealthy.
 Teri Robert Lead Expert, MyMigraineConnection terimmc@helpforheadaches.com
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Topic Closed Migraine Community MyMigraineConnection Archive of Long or Older Conversations Are Topamax side effects annoying or unhealthy???
