I am now 7 weeks on Topamax, but only 3 weeks at the maximum dosage of 100 mg per day. It has been a rather rough ride, with intermittent mood side effects, tingling, numbness, etc. More recently, I’ve had terrible insomnia and my dizziness has spiked such that I need a cane to walk. I also cannot carry bags up to my third-floor apartment, needing to rely on my (retired!) neighbors. Wondering if this is simply deteriorationg of my MAV or my body not tolerating the Topamax, my doctor said that I should drop the Topamax cold turkey (i.e., an abrupt drop from 100 mg to 0 mg) which will eliminate the substance from my system in five days, and then “we’ll see what happens.” I have a few concerns, to say the least:
I told him that the Topamax drug info warns against stopping the drug abruptly, as it could cause convulsions. He said not to worry.
I’ve already tried amitriptyline and propranolol as prophylaxis drugs, unsuccessfully. If I give up on Topamax, I’m eliminating an important tool to battle this illness before I get to the key 2 - 3 month point at which Topamax tends to show a positive effect. Am I foolish to keep taking a drug that I may not be tolerating in the desperate hope that it will kick in at some point and control the MAV?
If I stop the Topamax as the doctor advises and these side effects don’t go away, and then I restart taking Topamax, am I back to zero on my road to the 2 - 3 month point, meaning that these last 7 weeks have been for nought?
Unfortunately, I don’t have a neurologist with whom I can have this kind of discussion (which is a whole separate issue), so I would appreciate any insight that you, my colleauges in this community, may have. Thank you.