Hello @adavis27,
Thank you for sharing more about the challenges you're currently facing.
I learned a bit about Stiff Person Syndrome — an autoimmune condition affecting the nervous system that became better known through Céline Dion. I'm so sorry you have to deal with this as well!
You mentioned that since Xcopri was added this year, you've started to feel physical changes in your body. I haven't tried Xcopri myself, but I've experienced dizziness and loss of balance with other AEDs — those seem to be fairly common side effects, unfortunately. I hadn't heard of Xcopri causing stiffness, but muscle pain has been reported.
I'm tagging @bearbayou @lzbthtyler @lynn0225 @kariabrown, who are currently taking Xcopri, to share their experiences with you. There's also a discussion in our group that might interest you:
Is anyone taking Xcopri?
https://connect.mayoclinic.org/discussion/is-anyone-taking-xcopri/
Has any other medication been added besides Xcopri — perhaps for your Stiff Person Syndrome treatment — around the same time? And since Xcopri was introduced, have you been seizure-free?
Wishing you good blood tests tomorrow!
Chris