One of my specialists is suggesting I add topamax to my medication regimen. Currently, I take cymbalta, a low dose of gabapentin, which I want to stop, and pain medication (and aspirin, but it’s not for EM). I understand it can have some nasty side effects. Can anyone share their experience? Does it help?

I was on topomax at my EM onset for something else (bulimia). I actually decided to taper off it (did not increase / decrease burning during taper) because I was hopeful that there would be other anti-seizure meds (like lyrica or oxtellar) that would be more helpful for the EM, and that I would be able to tolerate better without the topamax.

Topamax gave me some trouble with word-finding + memory at 100 mg. However it returns when you get off of topamax. I was very nervous about this side effect but I actually found other anti-seizures like gabapentin to be worse in this regard personally + maybe everyone’s different. It also has the odd side effect of killing your appetite.

Good luck!

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My Daughter had tried Cymbalta and Gaberpentin , not any improvement. I have posted previously on what has completely turned her life around and that is compounded low dose Naltrexone. She weaned off the other drugs and we get the medication from a compounding pharmacy. Dosage is 4.5 mg per day only and her flares have almost completely gone. If She does flare now it’s minor and manageable.

Have a look at the web , Google low dose Naltrexone . I know everyone reacts differently to this horrible condition but after years of misery we are almost back to normal. Much happier young woman.