Side effects with combined meds: Xcopri, Lamictal, Epidiolex, Clon.

@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.

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

@adavis27
I am so sorry to hear you are struggling right now. I don't know much about Xcorpri and how it would affect you but most AED's have side effects that can cause a variety of issues. My understanding, as far as Epidiolex, it can increase the levels of your other AED's in your blood. I would definitely recommend getting a blood test to see what your levels are. For my son, who can't tolerate most AED's and always has the rare side effects, Epidiolex was a Godsend. We did start at a lower dose and titrated up gradually. For the first two years he was on Epidiolex, he was seizure free. Are your seizures controlled? Have you had any recently? What's a typical seizure like for you? I would definitely talk with your doctor and get some blood work done to check levels.
I'm so glad you found this group. You are always welcome here. There's a great many people who genuinely care and will support you through your journey.
Kerry

@santosha Thank you for your support. No I have not been seizure free yet, and that’s why I’m considering simply asking the doctor to reduce Xcopri. I am going to get the blood tests and an EKG for my heart tomorrow since my medical ride made a mistake on my rides Friday.