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Trial for new epilepsy med

Epilepsy & Seizures | Last Active: Aug 1 9:26am | Replies (21)
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Status update: started new trial drug on 6/17. Stuck it out (bad side effects) until I had 3 seizures in July with long, disturbing post-ictal periods after the 1st and 3rd seizure. After that, side effects worsened and i aborted the trial early this week....3 weeks before the last assessment. Couldn't take it anymore, and if I managed to reach the end, looking at a 4 month follow on trial. I understand some participants felt it helped their seizures, and others stopped for various reasons. Who knows?

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Replies to "Status update: started new trial drug on 6/17. Stuck it out (bad side effects) until I..."
Chris Gautier, Volunteer Mentor | @santosha | Jul 28 12:47pm

Hi @cathy5161
Thanks for those updates.
I'm sorry to get this news from your trial! You gave it your best shot, sticking it out for over a month despite the bad side effects, the seizures you had, and the disturbing post-ictal symptoms. That takes incredible strength and determination! But your safety and well-being have to come first, and it sounds like your body was telling you "enough."
I hope you're starting to feel some relief now that you've stopped the trial, though I know it might still be too early to tell. Are you back on your previous medication, or are you and your doctor working on a different plan moving forward?
Take care of yourself, and please keep me posted on how you're doing.
Chris

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