I took topiramate for 30 months as a migraine preventive. Wasn't very effective, and caused severe word-retrieval side-effects (plus other language-related probs). I finally gave it up (hard, because of the rebound headaches when I would discontinue). I took last topiramate 5 months ago, and my language side effects have gradually subsided, but I still continue to have the occasional 'bad day': just can't think of the right word to slot into a sentence to say what I mean to say. For example, a couple of days ago, I could not remember the name of the electronics shop where I sometimes buy various gizmos for my computer and stereo system (finally recalled it, 'Radioshack'). The kind of word you don't really need, but maddening when you can't come up with it.
Has anyone else had side-effects from topamax that persisted even after tapering off the drug? (I was careful about the taper). I have heard one writer speculate that side-effects from topiramate can be permanent, but my neurologist was skeptical (yet evasive at the same time -- as though he'd heard it too).
By the way, the Jefferson Headache Clinic solved my problem by diagnosing my headache as 'hemicrania continua', which responds absolutely to indomethacin (an NSAID). As long as I don't kill my stomach with the indomethacin, looks like I'm headache free, after a ten-year struggle.
Jefferson Headache Clinic is in Philadelphia. I highly recommend it. My neuro is Dr. Marmura.
magnus
Hi,
I was on topirimate and have been off it for about 6mths. I lost weight, was extremely tired and my head was not very clear when I took it. It did reduce the migraines a little, however the sideeffects werent worth it.
I don't think I have any side effects after stopping the meds. I now go for accupuncture twice a month. After a few years of struggles its the only thing that has worked.
Sorry that you still have side effects and I don't have much to offer in the way of advice.
How long have you been off the meds? It took a couple months or so for my head to be less foggy, and energy to return to somewhat normal levels.
Hope this helps.
oops, I re read the post and saw how long you have been off the meds.
Also, do you think these "word troubles" could be part of a migraine. I know I sometimes have hard times talking ie stumblung/studdering my words when I am tired, or may have a migraine coming. I don't know if, for me it is from my brain surgery 2.5 yrs ago or from migraines.
Cheers
Thanks, Styxx. It's conceivable the word-retrieval difficulties could be more related to the headache than to the topamax I guess. However, word-retrieval problems are standard side effects from taking topamax, and I had never had such problems before I started taking the topamax.
magnus