Topamax Trials

October 8th, 2008

Just a quick update on my trials of/on Topamax.  No tribulations so far, knock wood (picture me
knocking on my head.)  I’ve just finished my third week on the minimum dosage.  This is too soon to tell whether it is working as a preventive.  I have had 5 Migraines in those 3 weeks – which is on the low side of average for me, but three weeks is not a good sample – any given three week period could be better or worse.  More to the point I may need a higher dosage for full effectiveness, and the medication takes some time to build up in the system.

Topamax is an anti-seizure medication, originally developed for the treatment of epilepsy.  Its Migraine preventive effect was discovered in some epileptic patients who were also Migraineurs.  It is currently one of very few medications actually approved by the FDA for Migraine prevention, all of them originally developed for other purposes.  There are 100 other medications that have been effectively used to prevent Migraines; Topamax is not the only game in town.  It may be the first some doctors try, since it is fairly well known, but unfortunately also has a high side-effect profile.  For people who are sensitive to medications, as are many Migraineurs, this is a dilemma.

Typically people feel tingling in their fingers and toes, less often in the lips and other places.  I emailed my doctor after about a week on the stuff when I was having intense itchy tingling in my lips and nose, tongue and TEETH (who ever heard of itching teeth?),
top of my scalp, behind my ears, my kneecaps, elbows, ankles, tops of
my fingers, outsides of my thighs, shoulder blades, upper eyelids. It
kept waking me up one night.  I was worried that this might be an allergic reaction.  Dr. G emailed back that unless there was a rash, it was probably not a problem.  I had no rash and the tingling disappeared the next day.

The other side effect I was most concerned about was mental cloudiness.  Some people have reported so much mental fog and forgetfulness that the drug has earned the nick-name Dopamax!  I’ve had a little trouble with finding the right words, but that seems to be passing.  I’ve found that my ability to multi-task, or keep a sequence in my mind is somewhat impaired.  I have to concentrate harder, write more lists since my ability to make a mental list is less than usual.

I’ve been pretty sparse with the posts here the last few weeks and I put that down to adjusting to the new medication.  I am lucky that I’m not spacier still.  After nearly 50 years you get used to the way your brain works, and to find your thinking change is a big adjustment.  It’s like re-routing around road work.  I’ve always had a good internal GPS system, but these days I have to pull out a map.  And check it again every few minutes.

- Megan

Block head image courtesy of Stefan; road work image courtesy of Hubbers.

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Posted in Medicine, Musings | Comments (2)

  • emily

    i’m keeping my fingers crossed for you and topamax!

    also, i thought depakote was also FDA approved for migraine prevention?

  • Megan Oltman

    Thanks Emily, and thanks for the fact check – yes, Depakote and I believe 2 others.

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