Is anyone taking Xcopri?

@santosha -- Definitely, having seizures and also needing to be 'up' for dealing with so much all by yourself---this is sad!
There are many in US society living very challenging lives...Migrant Children for example (I was their teacher) Later, for 6 years I volunteered with Austin, Tx's homeless people--as their uncertified "barber", 4 hrs, 1x weekly) Now living in Calif I also work with/for the homeless: 1-2x weekly, I deliver day-old pastries, donated shoes, coats & luggage for street living. -- BTW: recent studies concluded that 75& of homeless have a mental/emotional burden, which worsens the longer they're on the streets.

Dear @bearbayou
What meaningful work you've done and continue doing.
May you be blessed in this calling! 🙏😇💜
Chris

@santosha
I have issues w my right hippocampus scarring causing tonic clonic for 48 years.
Also have focal aware seizures where breathing is an issue as is movement of tongue.
These aee newer, as are clusters.
I am on 250 lamotragine bid 400 Zoninsimide Sid, 5 mg clobazam bid. I added Fycompa and it did nothing.

I added xcopri off label for tonic clonics and at 100mg I am seizure free for 4 months.

Also free for te focal seizures.

I read below. I also have neuropathy. But the shrinkage of hippocampus and neuropathy hasn’t advanced in years.

However my brain chemistry has come back w a slightly high ptau 181 count.

Reading you say “memory issues” makes me concerned and I think, if you haven’t yet, look at ptau 181.

I have sleep apnea. They think the count is high due to the apnea. I think it’s from breathing issues on the worst of the focal seizures where I gasp and take half breaths consecutively until there is no air brought in and I pass out.

The focal and clusters are all post Covid.

@santosha
My doctor chose xcopri even though it’s not for tonic clonic because he has has good success so far. I also emailed with the NIH and she said they have had great results with xcopri for tonic clonic

@stepklin My husband, who also has the same type of seizures, has had great results with the Xcopri. He has been taking 100 mg once a day for 9 months.

Hi @bearbayou
I haven't heard from you in a while. How has your son been doing? Is the fatigue still giving him trouble, or has he been adjusting better to the medication?
Hoping things are looking up for him🙏
Chris

Hello,
I have Focal Aware seizures coming from my right temporal lobe. I take 250 mg of Xcopri in the evening and 100 mg of Brivact in the morning and in the evening. I've been doing pretty well. I get extremely sleepy in the evening.

@stepklin
Welcome to our group at Mayo Clinic Connect! I'm glad you found us, and I hope you'll find the support you're looking for here.
I'm so glad to hear you have been having success with XCopri, being already seizure free for 4 months! 🙏
Please don't be concerned about my memory issues. Unlike your situation with right hippocampal scarring, mine is on the left side. Since the left hemisphere is language-dominant in most people (~95%), left hippocampal scarring primarily affects verbal memory and language functions—things like remembering names, conversations, and specific moments. It creates those "blank spaces" in memory.
I haven't had my p-tau 181 levels checked yet. From what I understand, it's primarily used to detect Alzheimer's and other neurodegenerative conditions. I'll ask my neurologist whether this test would add value in my case. Thank you for bringing it to my attention.
Out of curiosity, has your doctor mentioned any relationship between seizure frequency/severity and p-tau 181 levels?
Your doctors are attributing the elevated p-tau 181 count to sleep apnea, but you have a different theory about the breathing issues during your focal seizures. Are you currently being treated for the sleep apnea? And have your doctors considered whether the hypoxic episodes during seizures could also be contributing to the elevated p-tau 181?
Chris

Yes , after a anterior temporal lobectomy on 12/2023 I have been taking 50mg xcopri am with 10mg onfi and in PM TAKING 100 mg xcopri with 5 mg onfi and hav not experienced anymore outward seizures but I do suffer from daily electrical / seizure like sensations going on internally in my head

Hello @santosha. ... aka "Chris'----
For month plus son has been taking Xcopri.. with the dose gradually being upped. Now he's at (we hope) his maintenance dose: 200 mg. Last week we
saw the neurologist, as she requested, and she decided to s-l-o-w-ly reduce the Trileptal that he's been on for 20 years. He still has occasional dizzy spells and headaches, but they're less in severity and/or only 'occasional' (we're all grateful)
ALSO
what's interesting is his vocabulary is increasing, he's becoming much more thoughtful & helpful ...and downright kinder/sweeter.
Is this because of Xcopri? Or just a wonderful, inexplicable change. Husband and I are super grateful to witness this--so is my son.