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Seizures with Amifampridine
I would like to take a few minutes to discuss the occurrence of seizures as a side effect of amifampridine. I have been fortunate to be taking this medication since March 2020, with no incident of any side effects. Last week, I had what was determined to be a grand mal seizure with 2 smaller seizures in the emergency room. As it happens, I remember very little about the whole experience except what my daughter told me later. I guess that’s good because I would have been scared out of my mind if I had known what was going on.
The doctors don’t know why this happened, although I had Covid about three weeks prior to this and that could have factored into it. I actually thought I had a stroke, but I did not. All of my tests, MRI, CT scan, EEG, bloodwork, etc. came back as normal providing no insight into the cause of the seizures.I’m wondering if anything like this has happened to anyone else and if so, what the responses from the medical teams were. I will of course be following up with my neurologist, but he is puzzled by this also.
Thanks.
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4 Replies
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Anngail, I hope someone who has been through this also will comment.
While it’s never happened to me, I do know the most noted severe side effect possible from Firdapse (amifampridine phosphate) is seizures.
Here’s a link on it.
https://www.drugs.com/monograph/amifampridine-phosphate.html#:~:text=Amifampridine%20phosphate%20can%20cause%20seizures,an%20incidence%20of%20approximately%202%25.I hope you will continue to work with your medical team to determine what is best for your.
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Thanks for your response. I have actually read this information in the past, when I first started taking Ruzurgi. The missing pieces of the puzzle now is that I have been taking amifampridine for almost 3 years with no side effects whatsoever. Not even a stomach ache! So I’m taking Keppra twice a day just in case. I don’t know if they will ever figure this out, since hopefully it won’t happen again.
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Hey @anngailn
I’m so sorry you had this experience! I know there are a couple of people on here who I believe have also had seizures, but I’m drawing a blank on who. Personally, I haven’t had a seizure or known anyone that has from Firdapse, but I do know it happens.
Please keep us updated on how your appointment goes! When do you see your neurologist again?
Are you feeling better now?
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Thanks Ashley. I see my primary doctor in a few days, but the appointment with my neurologist isn’t until the end of February. I asked if he wanted to see me before that but he said unless I have more problems I could wait. Knowing him, I would wager that he wants to do some research before seeing me. I am feeling better. I am at home. But there is a certain amount of anxiety regarding the possibility of this happening again. The studies have shown that less than 2% of people taking amifampridine have problems. Hopefully this was a one off and hopefully it has nothing to do with Firdapse.
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