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Trial for new epilepsy med

Epilepsy & Seizures | Last Active: Aug 1 9:26am | Replies (21)
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Hi - I feel much better thank you. I had to keep taking my current seizure meds during the trial. I see my neurologist/autoimmune specialist next week. Would like to try slowly weaning off the XCOPRI and stopping the Actemra shots. Not sure what her position will be. I'm convinced im over-medicated and still not clear which is worse - the seizures or medial side effects. Interesting the trial took me off the trial med cold turkey...and had no sense of issues associated with quick withdrawal.

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Replies to "Hi - I feel much better thank you. I had to keep taking my current seizure..."
Chris Gautier, Volunteer Mentor | @santosha | Jul 30 9:09am

Hi @cathy5161
I'm so glad to hear you're feeling much better in such a short period of time!
I didn't realize you had to continue your previous medications during the trial. What a double dose, huh? It sounds like you were overmedicated.
You wondered what's worse - seizures or medication side effects. Both are terrible, but in my opinion, medications should provide far more benefits than harm, which clearly wasn't happening.
You mentioned something that I could not fully understand: "Interesting the trial took me off the trial med cold turkey...and had no sense of issues associated with quick withdrawal". Do I understand correctly that you didn't experience any withdrawal symptoms when they stopped the trial medication abruptly?
I'm curious to hear what your neurologist and autoimmune specialist have to say. If you don't mind sharing their opinions, I'd be interested to know their perspective.
Chris

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