Toking up the dope on Topamax

July 24, 2007 2:43 AM

Gettin' the dope on Topamax: I know this question has been beaten to an inch of its life on the internets, but I'm interested in anecdotes from Mefites who've used this drug, specifically for migraines.

Is it all it's cut out to be, and a bag of chips? Does it blow your migraines (or other disability) to kingdom come?

What are the side effects? Does Topamax merit the nickname "Dopamax" (used on crazymeds.org) for its, well, stupefying characteristics? Any additional side effects to be worried about?

"I get my Topamax from this cool online pharmacy in Canada/Mexico"-type referrals would also be useful.

Migraineurs, non-migraineurs, everybody chime in.

posted by Gordion Knott to Health & Fitness (17 answers total)

I took Topamax for my migraines for about 2 months and it was honestly the worst two months of my life. It did nothing to relieve the migraines, and it absolutely lived up to the Dopamax name. I was exhausted all the time, I couldn't express myself. It often took two or three tries to get a single sentence out, and even if I did, the words sometimes wouldn't be right. I didn't feel safe to drive, I was out of synch with everything. It was like walking through molasses to get anything accomplished.

It also super-heightened my senses to the point that I couldn't eat canned soup because it tasted old, soda was the nastiest chemical acid I'd ever put in my mouth, and my husband had to strip at the door when he came in from work and head directly into the shower because I could smell the chemicals he worked with on him, so strongly that it made me sick.

My hands and my feet tingled all the time. That doesn't sound all that obnoxious, but they would go numb, they would go heavy, then they'd start tingling. Or, I'd be going along and it would just feel as though my arms had dropped off my body. I'd trip because I suddenly couldn't feel my feet. The sensation was so strong, and so disconcerting, I actually considered more than once the possibility that I might be having a stroke.

All of these symptoms went away when I weaned myself off the Topamax, and I'll never take it again. That said, my cousin also takes Topamax for her migraines, and for her, it's a wonder drug. She feels great, she's migraine free, and she only feels a little dopey from time to time. It's one of those all or nothing drugs, I think. If it works for you, it's a miracle. If it doesn't, it's a nightmare.
posted by headspace at 4:27 AM on July 24, 2007

I've been on Topamax for a year now, and I spend a great deal of time thinking about whether or not it's worth it. I get fewer headaches. I very rarely get genuinely debilitating headaches anymore.
I still get plenty of minor headaches, hangovers headaches, barometric pressure headaches (the latter are usually my worst headaches nowadays). So it's not a completely headache-free existence, but it is an improvement, pain-wise.
The cons are trickier to quantify. My feet fall asleep a lot. Enough that sometimes I'd just rather have a headache. I misspell words a great deal more frequently than I used to. I can't type as fast as I used to, and even when I slow down, the characters frequently come out of sequence. I don't feel all the way stupid, just slower (e.g. I was on a tv show featuring answers and questions a few months back and I feel like I may not have gotten my ass kicked quite so soundly had I not been on Topamax; I guess I'll never really know, but that's my impression). I feel as if my personality has gotten a little colder, more aggressive, and meaner.
I don't know how many of the cons to attribute to aging vs. the drug, but my impression is that those are the things that have changed since I started on Topamax.
posted by willpie at 5:05 AM on July 24, 2007

I was on Topamax for a few years, and I don't really feel like any amount of pain is worth being on that drug. It noticeably (to me) effected my cognitive abilities and my recall. It was terribly frustrating a depressing to suddenly feel so stupid all the time. Although I've been told that it's unlikely, I strongly believe that the effect has been somewhat permanent -- even now, after having been off the drug for a few years, I feel as though I haven't recovered 100% of the brain I had before I took it.

It also destroyed my appetite in the first few months, to the point where I barely ate and lost a lot of weight very rapidly. It has actually been tested as a weight loss drug, but it has been determined that the side effects outweigh the benefits of weight loss.
posted by amro at 5:52 AM on July 24, 2007

Both comments by headspace and amro mirror my experience exactly. I was at the point with my migraines that my neurologist was about to declare me physically disabled and put me on morphine. A last ditch attempt with the blood pressure medicines Toprol and Norvasc has reduced my migraines from six a week to one every two months.
posted by crosten at 6:15 AM on July 24, 2007

Topomax is a drug from the pit of hell.

I am naturally a good speller. Topamax rendered me unable to spell simple words without a dictionary or spell check. My cognitive ability and my memory was shot to Hades.


It also made soda taste nasty, and worst of all for me, it gave me these weird pins-and-needles type cramps in my toes periodically.

I have no idea what the antimigraine dosage is-perhaps a lower dosage would not be so bad. But I hate the drug. Hatehatehate.

(Oh, and on a side note, I was taking this drug during most of the worst of the Bunnyfire days.)
posted by konolia at 6:22 AM on July 24, 2007

Oh, one other thing. I have never seen this listed on any site but I had sexual side effects. My husband also took it for awhile and it affected him similarly.
posted by konolia at 6:24 AM on July 24, 2007

I only took Topamax for about a month (maybe less?) because then I got a kidney stone, which is apparently one of the possible side effects (and this despite the fact that I habitually drink lots and lots of water). It definitely made me feel a bit dopey and my feet tingled for the entire month - or so it seemed. I don't think I was on it long enough for it to impact my headaches. Anyway, I was awfully disappointed, since any drug that could make you lose weight and stop having headaches sounds miraculous to me. Honestly, I think it's worth trying anyway. Willpie up there is my husband, and though I know he has doubts about living with the side effects, I see the difference it makes on the ways headaches impact his life and there's no question that the drug helps in that regard. I'd love a chance to see what it was like to have fewer debilitating headaches, but alas none of the treatments I've tried have helped much. I would go for it, since you can always stop and the side effects aren't permanent (although I have since had another kidney stone. . . hm, coincidence? predisposition to stones? or Topamax? Guess I'll never know).
posted by katie at 6:37 AM on July 24, 2007

I was on Topamax for about three months and, besides the weight loss (~15 or 20 pounds) it was nothing but bad side effects. There was no noticeable effect on my migraines or tension headaches. Plus, I had severe nausea for the first 45 days, then once the nausea died down I had zero appetite - nothing tasted good and I could barely get myself to eat 500 calories a day. I also developed ITP -- ideopathic thrombocytopenia -- my blood platelet levels dropped to a dangerously low level (i.e., I would bruise very easily). The ITP is apparently a very rare side effect of Topamax, but it's one of the reasons that you're required to get regular blood tests while you're on Topamax. (At least, my neuro requred it.) The nausea and ITP went away when I stopped the Topamax, but it took several months for my appetite to fully come back.

The nausea/appetite side effects might have been worth it had there been any improvement in my migraines, but unfortunately it didn't have any positive effect. It must work for some people, though, so I hope you have better luck.
posted by ahimsa at 6:59 AM on July 24, 2007

Selection bias. Remember that while people who have negative experiences taking a drug are likely to seek out help on the internet to understand or alleviate their symptoms, people who have positive or no side effects are unlikely to report their experiences online, because they don't need help or support. The majority of people who take Topamax have no or minor side effects, and you will never hear from them, because they are out enjoying their lives, not seeking support online.

I experienced minor tingling in my feet for about the first 45 days I took Topamax, after which the tingling mostly subsided (I get a tingly feeling now for about 5 minutes at a time maybe once a week). Soda tastes terrible, but all other food tastes fine. I lost about 10 pounds during the first month, and no weight after that. I had no physical, cognitive, motor, or sexual side effects. My headaches are gone. My anxiety is gone. I could not be more delighted with this drug. Do not let people who have had negative side effects scare you away from trying it. If you have side effects, it may not be right for you; it's not for everyone. But for some people, it's fantastic, and the side effects are basically nil.
posted by decathecting at 7:23 AM on July 24, 2007 [4 favorites]

I commented on this in another Topamax AskMe thread.
posted by dmd at 7:30 AM on July 24, 2007

My wife was on Topamax for a while, for epilepsy. It made her into a drooling moron, and didn't do anything for seizures. I can't tell you the number of job interviews she lost out on because she probably came across as a verbally impaired fool.

On the other hand, hey, it's good for weight loss!

Stay away, stay far away.
posted by the dief at 8:48 AM on July 24, 2007 [1 favorite]

I was on Topamax for about a month for my daily chronic headaches. It was fun! (Please, notice the sarcasm here...). I did notice a few of the "dopamax" features, including forgetting words, but for me it wasn't as pronounced as it was in some people, and was actually more funny that anything (at least to me...) The thing that actually bothered me the most was that it made all carbonated drinks taste like ass. (Apparently the part of the brain it affects is right near the taste section). Also, my hands, feet, nose and cheeks had mild pins and needles a lot of the time. And boy did it make me anxious; I was also taking Ativan most nights in order to get any sleep. What finally made my neuro tell me to stop taking it was when my eyes started to hurt. Glaucoma is a rare but serious side effect as well, and my doc wasn't taking any chances.

In terms of the headaches however - it definitely made a difference. I could feel a headache coming on, then 15 minutes later I realized it was gone - completely and totally. Topamax was the only thing (so far, anyway) that had gotten me totally headache free, at least for parts of the day. I'd actually consider taking it again if I could rule out the glaucoma issue (I can put up with forgetting things... blindess, not so much.)
posted by cgg at 9:23 AM on July 24, 2007

I went on Topamax for my migraines about a year ago, after I had to stop using other medication due to allergy treatments.

Unlike the rest of the posters here, I haven't seen any side effects to it. I get my seven and a half hours of sleep, I run my 15 miles a week, and I do my usual stuff, no problem. No dopey feelings at all.

It has decreased the incidence of migraines. So for me at least, it works.
posted by MarcieAlana at 9:32 AM on July 24, 2007

I have taken Topamax twice, once briefly in combination with Dilantin for my seizures, and I had the "stupamax" side effects.

I've been taking it now for about four years as adjunctive therapy with Depakote for my epilepsy and it's been nothing short of miraculous. There is a real danger of selection bias, as someone else noted, when you ask the internets for assvice, and I'd be wary of the information you get. If you ask about this drug on the epilepsy boards, half the people there will say "it sucks! it should be outlawed!" but others, like myself, have had good or neutral experiences.

The point is that everyone is different and if we weren't there wouldn't be so damned many drugs out there.

FWIW, I'm almost positive there's no generic for Topiramate, but there has been an issue with filling errors.
posted by wildeepdotorg at 11:32 AM on July 24, 2007 [1 favorite]

Selection bias my foot. I have taken what has seemed like half a pharmacy in my time-Topamax was hands down the WORST med I have ever been on in regards to side effects. Yes, I know everyone is different, but this drug has such a plethora of possible nasties that you need to really think hard about trying it.

I tried it twice (thinking I needed to give it the old college try) and also my husband was on it once.

I forgot to mention that when my husband was on it he too passed a kidney stone, so if you do take it make sure to drink a LOT of water.

And make sure to get screened for glaucoma.
posted by konolia at 1:02 PM on July 24, 2007

I've been on it for years for depression, and I've had the problems with concentration and memory, but I've learned to live with it. I know that it takes me longer to retrieve memories and to think and the people around me understand that. High pressure situations do make my thinking more difficult, though.

Topamax does help me keep my weight stable, and I haven't been able to drink sodas in years. Those are the good side effects.
posted by Four-Eyed Girl at 2:44 PM on July 24, 2007

I research migraines and have even done some Topamax studies. Lots of people have the side effect that have already been mentioned. The majority of patients, however, do not have or have less severe or less frequent side effects than the commenters so far would seem to suggest and many are very happy to be on Topamax because it can greatly reduce the number and severity of their otherwise debilitating migraine headaches. I am in no way making light of the previous commenters experience -- many people experience unpleasant side effects. I do agree that there seems to be selection bias from the percentage of negative reviews. Some people have even more unpleasant and frequent migraines, though and they choose to endure the side effects. There is no way to predict whether or not you'll experience these side effects. There is only one way to find out.
posted by battlecj at 11:46 AM on July 25, 2007