Is anyone taking Xcopri?

@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

@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

@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 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

@stepklin
Hi Stephen, Good Morning!
Thank you for sharing all this additional information with me – I really appreciate it!
From what you've shared, it sounds like your doctor is leaving no stone unturned – that's reassuring, even though the testing process feels like a lot right now.
Let me share something that happened with my father this week that might be relevant. He's been sleeping very poorly, so his doctor ordered a polysomnography (sleep study). The results showed his oxygen levels dropped significantly during the night, and he was diagnosed with obstructive sleep apnea. His doctor has now recommended he use a CPAP (Continuous Positive Airway Pressure) device every night.
From that appointment, I learned that apnea can affect memory. I've been noticing my father's memory getting worse over the past year, so this connection really made sense.
I'm wondering if this might also be affecting your memory? Have you received your BiPAP machine yet? From my understanding as a patient, the apnea you've been diagnosed with could be a potential seizure trigger. It definitely impacts sleep quality, which is another well-known seizure trigger.
As I've shared in many posts, worrying in advance doesn't help us – it only raises our anxiety, which itself can trigger seizures. Here's a link to a recent post where I worried myself over nothing: https://connect.mayoclinic.org/comment/1496103/
Try to put Monday's procedure out of your mind for now and enjoy your weekend as best you can.
Keeping my fingers crossed for you – please keep me updated!
Chris

Thank you for this post @bearbayou !
@jemollica, I completely agree with @bearbayou's perspective. As my doctor always says, every patient is unique – even two people with the same diagnosis can respond very differently to medications. For quite a while, I was able to control my seizures with a pediatric dose of Keppra, even though I'm 55 years old!
I'm so glad to hear your son has reached an XCopri dosage where the blurriness has resolved. That must be such a relief! Has XCopri also helped reduce or stop his seizures?
I'd love to learn more about your son if you're comfortable sharing – what type of epilepsy and seizures does he have?
Chris

@santosha -- good morning--
To answer your questions-- which are great ones because they ask me to notice more.
1. is my son still experiencing focal seizures? yes, they seem to happen, but not as many and -- he's become more attentive to "them" -- sometimes he'll seek out a quiet place (leave grocery store & sit in car), not go to a social setting, etc... where before he kinda just went alone with whatever.---thus, he seems more self-aware (physically and mentally/emotionally).
2. Trileptal --now takes 25 mg LESS daily.... it'll be a slow process, thankfully.
3. When Xcopri levels and vocabulary increase, etc:
I started noticing at 150 mg that his vocabulary was increasing..also, of all things, his inner wisdom. Yesterday, gently, he put his hand on my shoulder and said "Mom, why do you begin the day by getting on the computer? " I'm aware of this habit, but having it come from him---well, this morning began with my opening a book I've meant to read for weeks.
--About your keeping a dairy: I've been doing that for my son --at wise suggestion of his neurologist.-- now I realize I've gone slack in this regard--...yet ---just yesterday, for 1st time ever we had a 'letter' addressed to son's Nurse Practitioner (NP)--- son & I had worked on this together. Points were re: what's improved, what concerns he has, and help he needs
(NP) nurse practitioner told me 3 different times that the 'letter' was 'very helpful.'

Hi Chris
My son had emergency surgery in 2016 for a intraventricle central Neurocytoma of a massive tumor- had no symptoms of a headache - major complaint frequently was upset stomach with vomiting that the emergency room always dismissed as a bad virus or other digestive ailments which all proved not it was from the tumor growing in his brain- he’s since had 9 brain surgeries one of which they inserted a VP PRO GAV SHUNT - result of these he remained with many disabilities and seizures- he’s tried multiple seizure meds thru the years to finally after 2023 having his last surgery of an anterior temporal lobectomy and taking xcopri along with onfi he has been free of experiencing his constant outward seizures , but he is suffering on a daily basis inward seizures like electrical painful sensations in his brain that neurologists can’t seem to alleviate - he tried migraine meds , Botox and injections to no avail and stopped - he continues with his daily therapies and keeps a positive outlook it’s our hope they will find a relief for him to have a quality life

@bearbayou
Thank you for sharing more details about your son's situation. After reading this last post of yours, I had another thought I wanted to share with you.
Low sodium is a well-known seizure trigger – one that both your son and I have dealt with. So I'm wondering if the LMNT and homemade rehydration solution you've been giving him might be another piece of his improvement puzzle. The increase in his sodium levels might have also contributed to fewer seizures, which in turn could be helping his cognitive improvement and vocabulary.
Have you perhaps noticed fewer seizures since you started giving him the LMNT and homemade rehydration solutions?
I wanted to share this thought while it's fresh in my mind. I'll respond more fully to your post on Monday!
Have a lovely Sunday!
Chris

Soy, I still fall down most every day from my lousy balance on my right leg. Seizer or falling down and hi to your head… mmm…