Is anyone taking Xcopri?

@santosha
Thanks for the recipe.
Surely other readers will benefit. (Unfortunately,
Mineral water is a problem for my digestive system.)

Hi @kariabrown and @lzbthtyler
It would be very nice if you could share your experience with Xcopri in the discussion that @lynn0225 has started.
Thank you!
Chris

My pleasure! @bearbayou
Here is the recipe for my homemade rehydration solution:
1 liter of mineral water
1 level teaspoon of salt (3.5g)
2 level tablespoons of sugar (20g)
Fresh coconut water (not processed/commercial) can also be an excellent alternative if it's available in your region of the US.
Would it be interesting for your son to join our group as well?
Wishing you a nice weekend!
Chris

@santosha -- Chris Gautier--Thank you so much for responding and for doing so in an authentic, informed and friendly manner.
I'm going to copy your reply & give to my son. ------- Because I take "LMNT' electrolytes, daily, for a different challenge, 2 weeks ago I recommended this to
my son. He really liked it from the 1st sip--so he's been regularly drinking since then... The neurologist knows this. ---She didn't recommend anything else.
LMNT is a wonderful convenience, but now that both son and I are using it--I'm interested in making it in my kitchen.
Would you please share your recipe for home-made electrolyte drink?

Hi @bearbayou
The same happened to me while taking Trileptal. My sodium levels dropped dangerously low—a known side effect of this medication—which triggered my first tonic-clonic seizure. While weaning off Trileptal, my general practitioner recommended preparing and drinking a homemade oral rehydration solution to help restore my sodium levels.
Let me share something I learned in my epilepsy journey. After experiencing my first AED side effects, I began reading every AED leaflet in detail, becoming increasingly alarmed by the long lists of potential side effects. This only created anticipatory anxiety and unnecessary suffering. Ironically, anxiety itself is a common seizure trigger. I don't recommend this approach.
Since then, my husband and I have developed a different strategy: I no longer read medication leaflets. Instead, if I experience any side effects, I tell him and he checks the leaflet to see if they're related to the medication.
What I've learned throughout my epilepsy journey since 2019 is that while all AEDs have many potential side effects, this doesn't mean your son will experience them. For instance, I've met many people who take Trileptal without any sodium-related issues. I'm currently on Keppra, an AED often feared for its association with depression and suicidal thoughts—yet I haven't experienced these side effects at all. As my doctor reminds me, each body is unique. What works for one person may not work for another, and vice versa. Xcopri might work wonderfully for your son, just as it has for others.
Has your son's doctor recommended any measures to maintain his sodium levels during the transition from Trileptal to Xcopri?
Chris

I am on it 200 mg at bedtime but I also take a different seizure med. I get drowsy if I dont take it at bedtime.

Yesterday, adult son & I picked up 3 'books' of Xcopri"--his new RX for focal/partial seizures. He's to take gradually, while weaning off of Trileptal.
No matter what-- he must drop Trileptal because reportedly it's THE reason his sodium levels are now low and dropping (128 last week).
PROBLEM: son called this AM to say he's afraid to start XCOPRI because of its side effects. ---meanwhile he continues to have focal/partial seizures. AND without lowering his sodium level/blood (by going off Trileptal)
son canNOT have the colonoscopy recommended.
==== Do you take XCOPRI

@randallshields56
Hi Randy,
Thank you so much for sharing that with me and our group—I really appreciate you opening up!
It sounds like we have something in common! When I sense a seizure coming on, I do the same thing—I stop everything and focus on my breathing, along with some techniques I've learned through the Andrews-Reiter approach. It has been really helpful. I actually shared more about it recently in this discussion if you'd like to check it out:
https://connect.mayoclinic.org/comment/1422302/
I also have to work harder to stay focused on tasks, and I've noticed some memory challenges too. From what I understand, my type of epilepsy—temporal lobe with mesial sclerosis—can affect memory. Add to that the fact that AEDs themselves can also impact memory and concentration.
I'm curious—would you mind sharing what type of epilepsy you have? I have temporal lobe epilepsy, which is known to be a highly refractory type. Unfortunately, my current AED isn't controlling my seizures anymore, even after increasing the dosage, so I might need to switch again.
Chris

@santosha
right now .25 three times a day 9am-3pm-9pm

@santosha
was doing .25 twice a day. if things stay the way they are I'm going to try to go back to just two times a day.