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Side effects with combined meds: Xcopri, Lamictal, Epidiolex, Clon.
Epilepsy & Seizures | Last Active: 1 day ago | Replies (15)Comment receiving replies
@santosha I’m sorry I didn’t reply straight to you. I’m still new to this… but I hope you read what I posted.
I've been on Epidiolex and Lamictal for years, and Xcopri has just been added this year. I am going in for blood tests this Friday. Along with these side effects, I have another illness, Stiff Persons Syndrome, and I have had a Baclofen pump to treat it since 2009. Even though the catheter from the pump was accidentally detached more than a year ago, I was still able to exercise, dance, and walk until early in May. That was around the time I started Xcopri. The neurologist is saying that the stiffness and dizziness are from Stiff Persons Syndrome. I don't know what to say, think, or do. Xcopri is supposed to be increase, Clonazepam stopped, and my other medications more than likely will not be changed until the blood tests provide some valuable information.
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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
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