Is anyone taking Xcopri?

@bearbayou Good Morning,
This is great news, I'm so happy to hear this! Definitely worth celebrating!
I think your son's vocabulary improvement could stem from several things working together: the XCopri introduction and increase, the Trileptal reduction, and fewer seizures overall.
Is he still experiencing focal seizures? Have they decreased or stopped since starting XCopri? I ask because focal seizures can really affect vocabulary – I've experienced this myself. When I became seizure-free (or had only occasional seizures), I noticed a clear improvement in my own word-finding and verbal fluency.
If I understand correctly, Trileptal was reduced about a week ago. How much did the doctor decrease it?
Also, your son started XCopri last November, right? When the dose increased to 200 mg, was that when you began noticing these vocabulary changes?
During my own medication adjustments, keeping a daily diary helped me connect the dots between medication changes and improvements. It might be helpful for tracking these positive developments!
I hope you don't mind all the questions – I'm just trying to get a better picture of what's helping your son progress so well.
Keeping my fingers crossed for more improvements to come!
Have a wonderful weekend!
Chris

@jemollica --Thanks for sharing about your son,
I'm being reminded that each of us has unique needs via our brain, body-- and consciousness. (Consequently, your son's condition improved with a lowering of Xcopri, mine improved with an increasing) Of course all of this can change again..but it IS so important that we have skilled medical help--and for my son-- it's also important that he factors in non-chemical influences (he's starting to exercise, starting to meditate, etc.

@bearbayou
I’m happy to hear of his positive results
When my son upped the xcopri to 200mg his eyes became blurry so lowered to 150mg and no more blurriness

@santosha i am unsure yet why they checked some brain chemistry levels.
I think my doctor was just very aggressive with everything. we had a long intake. people came in numerous times to get his attention to move on to the next patient and he totally ignored them and continued with me.
and he did not like certain things. and when it came to orders, he just kept saying 'that, that, that, that, and that too.' and i have just been going for all sorts of tests. and my second appointment was about results and not a follow up but orders for more tests. next will be my follow up.
he did not like my sleep and spoke right away about a sleep test. and so i think that led him to think ptau.
and i mentioned my first focal aware, in which i woke up and started to not be able to breath. i gasped for air and took half measures less each time. and i panicked and the gasping became faster. i could not form words, only cluck my tongue and as i breathed in last bit of air i fell into memories of childhood. i was aware and losing self and falling and my arms were paralyzed to break fall so i remember til right before i hit the ground. and then i woke up in the tub. and then i started having the focal aware seizures, with the same issues, but if i do not panic and control my breathing I realize i can formulate these words, i can move my arms . but if panic i shut off oxygen supply and i pass out. i think these are more injurious than the apnea.
he did not like when I mentioned not liking fycompa. I did not like when i got to 8mg, in particular. i would feel a surge in my head, like a pulse. and i mentioned having seizures then where i did not like my postical behavior. I thought i had been rude. i thought that was the fycompa.
He did not like when i mentioned confusion with short term memory, vocabulary struggles and dropping things all being new issues i face
but i will get the BiPap machine for apnea. i stop breathing frequently and lengthy.
so he is correct. but i will let him know again about the breathing episodes i face.
but he is also rigtht about the ptau for me.
while my right side has shown no shrinkage, unfortunately from 2013 to now there is a little damage on the left side i found out in 2023. so when i started to struggle a little, i attributed it to worsening issues on my left hippocampus due to the amount of seizures i was having.
I am worried. i go for lumbar puncture monday and follow up w neuro in march. and i wil be told it is early onset... they think. i believe i did good on the cognitive exam.i will go in and tell them the first three words they told me and then the last five words.
but i will ask why they tested for the Ptau 181. but i think i understand.
thank you for welcoming me. I appreciate the support. excuse
stephen

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.

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

@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

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.