Is anyone taking Xcopri?

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.

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

@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.

@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

@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.

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

@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.

@bearbayou
Good Morning!
Your son is fortunate to have you and your husband advocating for him, just as I'm fortunate to have my husband by my side. It's heartbreaking that many people have to navigate this alone.
Chris

My pleasure @frankv !
When my focal seizures started, they were so subtle and lasted just a few seconds that I didn't give much importance to them. It wasn't until I learned more about epilepsy that I realized they were auras: focal seizures where a person remains conscious and aware.
Chris

@santosha
Thanks for the link. Interesting story. Certainly possible that I went for years with this, although I never experienced any symptoms. In a brain MRI about 10 years ago a couple of TIAs were discovered. It was not possible to date them, and I never was aware of those events.