I could almost handle the headaches, but I can I handle the stupids?
November 23, 2009 9:33 AM   Subscribe

Tips & tricks for adapting to the side effects of Topamax (topiramate) for a full-time office worker & part-time grad student?

I have been dealing with chronic migraines for about ten years, and have tried a number of preventative drug therapies during that time (elavil, flunarizine, propranolol) with limited success. Recently another disruptive health issue cropped up, which spurred me to try to get the migraines under control.

I am now a few weeks into a daily dose of Topamax.

Some of the much-discussed (on AskMe and elsewhere) side effects have already become apparent, most notably:
  • Difficulty with attention / concentration - last week there were at least two days where I accomplished almost literally nothing at work. I continually zoned out for quarter- to half-hour periods, and had trouble thinking clearly even when I did remain on-task for more than a few minutes at a time. Although this did provide some useful insight into my partner's not-always-so-wonderful-world of living with ADHD, I probably cannot justify trading sick days at home with migraine for zombie days at work on "Dopamax" for too long.
  • Clumsiness / ataxia / psychomotor slowing - terminologically, I'm not sure how to differentiate between these, but at any rate, I'm much more of a klutz than usual. I had been walking carefully on a torn medial meniscus since May while awaiting an MRI and (maybe) surgery, but since the Topamax my knee has been very sore due to countless stumbles and mis-steps. One slip was bad enough that I was walking with a cane for stability for two days afterwards, and I was almost tempted to keep doing so just for the added sense of security. I'm normally a brisk walker, and on top of the cognitive side effects it feels like adding insult to injury that I should have to shuffle along in physical space as well as in my mental environment.
  • Communication - both in written and verbal form... even simple sentences come out mangled, and I've been producing the most egregious typos -- e.g. "licidiouse" for "delicious" -- and completely mixing up word order to the point of utter nonsense without noticing (with that in mind, I apologize if my sixth proofread doesn't catch all of the errors in this post). At school, I have had to drop one of the two courses I was taking this term because the prospect of full participation in a grad-level seminar was too much to bear right now; as it is, I had to revert to a 'behind the scenes' preparatory role for a group debate for fear of making an ass of myself in front of a tutorial tonight.
Getting to the point, my question for anyone who has taken Topamax or another drug with similar side effects is: what strategies were you able to emplyo successfully to mitigate these (or other) impacts on your life? I know that it will only be possible to 'push back' against the drug to a certain extent, and that I will ultimately have to decide if its effectiveness versus migraine (if any!) is worth the cost, but at this point I'm trying to remain optimistic and gather whatever tools I can.

posted by onshi to Health & Fitness (14 answers total) 4 users marked this as a favorite
It's called "Dopamax" for a reason. These side effects are notorious, and as far as I know, there is no way around them. I was on Topamax for a time, and would regularly find myself zoning out at odd moments. For example, I would "wake up" and realize that I'd been brushing my teeth for 10-15 minutes. When doing reps at the gym, I would skip or repeat numbers, because I couldn't even count without getting mixed up.

These effects are very particular to the drug. Most other anticonvulsants will not do this to you. I switched to a different drug and the side effects vanished.
posted by dephlogisticated at 9:52 AM on November 23, 2009

I had my first seizure in college and was put on Topamax for my sophomore through senior year. It was a change, most my friends from that time think of me as more aloof and scatterbrained than I am now. (I no longer take it)
The biggest issue is that I encountered was that I was a person who kept everything in my head. I didn't take notes or keep a calendar. After seriously struggling in the end of my sophomore year, I began to religiously write everything down. It helped immensely. But was taxing for sure.
I extended my note taking to keeping a journal in my gmail account, a very detailed journal. It helped me concentrate in class to not only be taking notes but to know that everything I was thinking about I had to remember for my journal.
I wrote about how my friends were doing as well and this had the benefit of not only helping me remember details about my social calendar but probably made me a better friend by being more aware.

The motor function issues where kept in check, I think, by spending a lot of time engaging in physical activity, I played a lot of intramural sports and an ass load of four square. (four square is serious business at my college) So i would recommend keeping active as much as possible to counteract the side effects there.
posted by French Fry at 9:54 AM on November 23, 2009 [1 favorite]

Response by poster: I should add that so far, I've responded with drugs (caffeine) and by trying to "be careful". Neither of these has worked very well.
posted by onshi at 9:55 AM on November 23, 2009

Yes, Mrs. the dief was on topamax for a good long while for epilepsy. She had a lot of the symptoms you and dephlogisticated mention. Some people tolerate Topamax fairly well, and some don't, and as far as I know if you don't tolerate it now you probably won't get used to it later. Consider trying a different anticonvulsant or migraine therapy.
posted by the dief at 9:56 AM on November 23, 2009

I couldn't stay on Topomax due to the side effects. I was, however, on Tegretol for a few years and it made it IMPOSSIBLE for me to concentrate. I was pretty zombified.

My honest advice is to switch meds. I have epilepsy and I have done trial and error for YEARS before I found a medication whose side effects are not worse than having a few seizures now and then. You need to find something that suits your lifestyle as it's so much harder to suit your lifestyle to the drug.

If you do proceed with the Topomax, you need to set a routine and stick to it religiously. Write down what you need to do at work. Set alarms. (I do this in my job as a nanny, I have a series of alarms set on my phone JUST IN CASE something happens/I lose track of time/etc. and I need to be somewhere.) When you start a task, set a timer for when you think you should be done with it. Knowing that you have a "deadline" will help at least a little bit in keeping focused.

WRITE. DOWN. EVERYTHING. Get a notebook. Not necessarily a calendar - what worked for me was just a plain Moleskine in which I wrote down EVERYTHING. Errands I needed to run, emails I needed to write, things I read about that I wanted to remember later - EVERYTHING.

These are really the only steps you can take - in terms of clumsiness and confusion, you just have to make the best of it and practice being mindful of your surroundings/what you're saying. I often "lose words" with my current medication and go through bizarre grammatical constructions to get around this, but it's a minor side effect and as long as I can make myself understood, I don't mind too much.

Try another drug. I know you've tried a bunch so far, but there are a ZILLION out there and this one may not be the right one for your particular lifestyle.
posted by grapefruitmoon at 10:04 AM on November 23, 2009 [1 favorite]

Chiming in as a chronic migraine sufferer of 10+ years. In my opinion the side effects you are experiencing means that the medication is not right for you, even if you are having less headaches. I am a graduate student, too, and side effects like this would quickly ruin my life.

You mention a few different drug strategies you've tried. Have you tried an elimination diet? I have been shocked and amazed at how much this is helped me. There is a good one outlined in the book How to Heal Your Headache. After being unable to deal with the chronic pain I decided to go all out and eliminate every single suggested trigger. It helped immensely (bringing migraines down from 1-2 a week to 1-2 a month).

Also, have you tried taking a magnesium/vitaminb2/coenzyme q-10 vitamin stack on a daily basis? Many neurologists recommend this course of action these days, and I think it probably helps decrease migraines to some degree (maybe 10% for me, but I'll take 10% over 0 any day).

There is also an additional (potentially illegal, depending on where you live) drug strategy that has had a greatly prophylactic effect on my life: smoking a small amount of marijuana daily. There is actual scientific reasoning behind this.

Anyway, I am working on my PhD in Pharmacology and I like to keep up to date on migraine therapies/relief strategies. Please feel free to mefi mail me if you ever want to talk.

Oh, and there are a few new drugs that are in stage 3 clinical trials right now, and may be coming out as early as next year. They are drugs being developed specifically for migraine prevention (not anti-convulsant, anti-depressant, beta blocker, etc, which just so happen to work for migraine). I want to believe that they'll provide people like you and me a better life.
posted by sickinthehead at 10:13 AM on November 23, 2009 [1 favorite]

I've found that the side effects have lessened to some extent over time (I'm talking months). YMMV.

Keeping lists is good, as mentioned above. Also, when I first went on the drug, I played those "Brain Age" Nintendo DS games, which really seemed to help with concentration and memory during the worst of it.

Lastly, you don't mention your dosage, but there can be a huge difference in the intensity of side effects between even 25mg increments. (based on the change side effects as I gradually ramped up to my ultimate dosage). If you're on a relatively high dosage now, you might want to scale it back (in consultation with your doc, of course).
posted by somanyamys at 10:32 AM on November 23, 2009

Ugh. Topamax was brutal for me. Which is unfortunate, because it actually worked on my headaches, but the side effects were too much. When it started making my eyes hurt, my neuro finally pulled me off it, as glaucoma is also one of its side effects.

If you haven't tried Coenzyme Q-10 yet, do that. I found it worked a bit.

But to echo the above posters -- if you can't take the side effects, try another drug. For some people, the side effects are minor and these are the people for which the drug really works. For others, it's just not worth it. The trouble with migraine prevention/cure is that it's a black art, and really, is just trial-and-error. Keep trying.

Oh, one more thing. In case you haven't seen me recommend it yet (I seem to do it a lot here on AskMe). Heal Your Headache, by David Buchholz. Definitely worth a read, even if you don't follow his plan.

(Another thing to note -- one of the things I noticed in my neuro's office was a Topamax calendar, pens, and all sorts of other propaganda. I can't help but wonder what sort of affect the pharmaceutical reps had on his choice to push the drug as one of the first things for me to try. Just sayin...)
posted by cgg at 10:37 AM on November 23, 2009

Response by poster: cgg: I hear you about the big phrama schwag effect, but in my case that's not a salient concern. My doctor was very frank about how he feels that Topamax is by no means a "drug of choice" for migraine but that it was the next therapy to attempt given my lack of success and/or poor tolerability with the other options.
posted by onshi at 10:46 AM on November 23, 2009

Seconding the elimination diet. Going without Chocolate, Coffee Etc is totally worth it for finding out what your triggers are and controlling/eliminating your headaches.
posted by French Fry at 11:03 AM on November 23, 2009

Response by poster: I don't mean to sound ungrateful for the advice, but I have tried elimination diet(s) before with some success. I now avoid a number of foods. Right now I'm looking specifically for coping strategies for the side effects of Topamax for the time being.
posted by onshi at 11:30 AM on November 23, 2009

I switched from Topamax to Nortriptyline and never looked back. It is actually better at controlling my migraines, though it does have it's own set of side effects.
posted by ryanissuper at 1:01 PM on November 23, 2009

Have you talked to your doctor about a lower dose? I had some digestive issues with it, and my doctor cut the does in half. Headaches still stopped, and so did the side effects. (I am no longer on it, because of other health issues that require pills and my being too lazy to keep up with multiple meds.)
posted by Lesser Shrew at 3:58 PM on November 23, 2009

I hated Topamax with the heat of a thousand suns. I am a great natural speller but I couldn't spell worth beans on that stuff.

One thing: if you do need to continue to take it do make sure you drink plenty of water. I know someone who developed kidney stones on it. (You've probably been told by your doc to drink water-you really need to do it.)

Honestly, of all the drugs I have taken, Topamax is among the top two as far as brutal side effects. If I was you I would at the very least try a lower dosage-or find something, anything, else to take.
posted by St. Alia of the Bunnies at 5:35 PM on November 23, 2009

« Older I've just seen a face...   |   Help me replace my sweetie's Celtic band Newer »
This thread is closed to new comments.