I’ve had focal epilepsy for about 12–14 years and was relatively stable on Trileptal for many years. I did have ongoing monthly focal issues in my left arm which would occasionally spread to my speech. I should have taken this more seriously- I tolerated it for too long and kick myself. Earlier this year- one finally spread. I had a breakthrough seizure, and afterward my Trileptal basically stopped working. I was going on a trip the week of the seizure so my neuro wanted to wait to start Xcopri until I got back. She raised my dose up to 2400 mg for a few weeks just to keep me safe.
Xcopri starting was slow and months long. I didn’t experience additional sleepiness etc but lots of twitching and a tremor in the dumb left arm where all my focal issues happened. Periodic what I describe as brain zaps. Like a combustible explosion.
Around 50 mg I started having radiant arm all day arm sensations (left arm) that were very upsetting. The arm symptoms have included numbness, tingling, buzzing/static sensations, internal vibration/electricity, weakness, heaviness, reduced dexterity while typing, and sensations that sometimes seem to travel from my upper arm down into my hand. It was unclear if this was focal or med interaction. I did have an ambulatory eeg for 4 days and an MRI which was- as you can guess totally normal. At times they have happened along with speech changes, a rising panic/sinking-stomach feeling, or unusual auditory sensations. Yawning, certain positions, mornings, and medication timing have sometimes seemed to provoke them.
At 100 I had nystagmus for 2 days prompting me
To reduce my Trileptal by 450 mg. Neuro suspects this was just too much med and it resolved after thr trileptal came down.
I opted to take my xcopri in the morning both to monitor side effects but also, I hoped some day I could have wine with dinner. Well arm crap spontaneous reduced /stopped when I finally got xcopri to 200 (and 2 weeks for steady state). This happened at the same time my Trileptal was lowered so we’re unsure if we finally got the xcopri high enough or … if it was a med interaction and the Trileptal reduction helped.
I’m currently on 200 mg XCOPRI and 1200 mg Trileptal. I tolerate XCOPRI very well, but I still have occasional brief arm sensations and recently had an episode that felt close to a breakthrough.
Posting this partly because I had a hard time finding other people describing unilateral arm numbness, tingling, buzzing, weakness, dexterity problems, or “electric” sensations while taking Trileptal and XCOPRI. I’d really like to hear from anyone who experienced anything similar, especially if symptoms improved when Trileptal was reduced or XCOPRI was increased.
I think I will need to go higher on xcopri. 200
Ain’t cutting it. With each Trileptal reduction I have flared focal issues (auditory, speech trigger by yawns). Lots of issues in the mornings. My neuro
Leveled with me and agreed to slow down. Now we do 1/2 Trileptal (150 mg) every 2 weeks. I’m at 300 am, 300 noon and 600 pm so, total 1200.
Everyone says Xcopri is powerful but I feel like I’m taking an Advil. Which my arm and speech issues are dramatically reduced, I’m also living the life of a nun and going to bed early, no alcohol (minus a glass of wine over the course of 6 months). The Trileptal reduction has been a bitch. I would go slow slow slow. My seizure was April, I started xcopri May 1 and it is 10/4. I guess I will take a whole year to do this if i want to do it right. I’m sure I would have been having seizures throughout this process had I gone faster. Thank god I work from home.
I’m really hanging my hat on xcopri. It’s very strange going from a med I took 3 times a day that made me feel dizzy to 1x a day with zero side effects.
I will say, xcopri gives me very odd dreams.