Is anyone taking Xcopri?

Thank you for sharing your experience @heatherae !
Like you, I have temporal lobe epilepsy and have had a really hard time with side effects from the different AEDs I've already tried. Since December 2024, I've been on Keppra. My doctor reduced the dose little by little to make it more tolerable, and I was seizure-free for almost 8 months—which felt wonderful! But since last August, my seizures have come back despite increasing the dose again, and unfortunately, that's brought back many unpleasant side effects. I have a feeling my neurologist will suggest trying another AED at our appointment next week.
Would you mind sharing your current Xcopri dose? And do you also have mesial sclerosis in your temporal lobe?
Thank you!
Chris

Hello! I just started taking Xcopri a few months ago. I am so excited about this medicine! I have taken almost every drug out there, and had the worst side effects. I was running out of options. My neurologist told me this is a newer drug with hardly any side effects. I wasn't holding my breath. I have had double vision, weight gain, hallucinations, exhaustion, and so many more side effects from the other drugs. I haven't had any side effects with Xcopri! I also take a lower dose. It's amazing. I really hope this med works for your husband. It has changed my life.

@randallshields56
Hi Randy
Thank you for taking the time to share your experience! 🙏
Hearing strategies from others that help avoid seizures is always much appreciated.
Chris

@santosha my seizures drained me, but each passing day it got better. They suck your strength away. I've come to recognize when mine are close, I excuse myself from what I am doing and take a quiet break and bring up happy things to think about, nothing fast to boost adrenaline but calm the mind. Hope that helps, I exercise daily each other day different part of the body. If tired then the next day. Hope this helps 🙏

That was a smart doctor. Only problem with decreasing medicine is that you taper off, too suddenly or two much can cause more issues. I'll send you a prayer 🙏 from no more seizures. Have a blessed day 🙏

@randallshields56 took a couple weeks but made me feel better and same time anxious to get meds away not increase them. But no seizures since increase. I also learned that once I find myself feeling rough, find a quiet place and relax. Think about something like a walk on a trail. The sounds, smells feel of the ground under my boots, anything I could remember
If I took a nap so be it if not at least I felt more relaxed.

@kariabrown
Something just occurred to me—seizures themselves can really drain our energy.
Do you think you're feeling more tired now because your seizures aren't as well controlled, or has the tiredness been pretty constant since you started Xcopri?
Chris

Hi @kariabrown
Thank you so much for sharing your Xcopri experience in our group, this is much appreciated!
You're absolutely right; drowsiness is such a common side effect with so many AEDs. I've experienced it myself and still struggle with it.
What's made a real difference for me is my daily yoga nidra practice—just 30 minutes can be equivalent to about 3 hours of deep sleep—followed by a short nap right after lunch. Together, these really help me manage my fatigue.
Have the medications your doctor suggested been helping you stay more alert? And have you tried incorporating short naps into your day to see if that eases the tiredness?
Wishing you all the best as you and your doctor work on getting your seizures under control again!
Chris

Hello! I have been taking Xcopri for almost 5 years now. I began taking it after a craniotomy and removal of what they had hoped was my seizure focus. They got most of it, but due to them not being able to get it all without losing some vision, I elected to stay on meds. Long story, short…I honestly can’t remember what my starting dose was but I was TIRED, even when taking it only at bedtime. I am now at the maximum dose of 400 mg a night. When I tell you, it has been a struggle, oh boy! Despite the fact that I now have to take a different med to stay awake during the day, Xcopri has kept my seizures more controlled than any of the many other meds I have been on. And the drowsiness seems to be the only side effect for me. And most anti-seizure meds pretty much cause drowsiness. Now, as I tell you this, I can also say that my seizures have been less controlled lately. However, my neurologist has been digging into this, and the cause seems to maybe stem more from the surgery than anything else. The Xcopri is still doing its job for the most part

My pleasure @bearbayou !
Here's an improved version:
Wow, I'm surprised to hear that mineral water causes digestive issues for you - that's the first time I've heard of this!
I was curious to learn more, so I did a quick search and discovered that while it's usually well-tolerated, some people can indeed have digestive problems with it. I'm sorry you're dealing with that!
The good news is you can definitely make this recipe with regular filtered water instead - it'll work just as well!
Does your son have the same issues with mineral water, or does he tolerate it okay?
Chris