New Medication: Hi all Has anyone been on... - Epilepsy Action

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New Medication

car67 profile image
3 Replies

Hi all

Has anyone been on eslicarbazapine (aptiom)? I’m being weaned of parampenal (fycompa) as had very bad side effects with my mood and exhausted whole time. I’m hoping this one is going to help , with fycompa my side effects were really bad but seizures were still happening too on a regular basis.

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Adlon57 profile image
Adlon57

I have had epilepsy for 52 years, juvenile myoclonic epilepsy, so I have been through most of what was is available, currently on Vimpat and Briviact, my worst was Fycompa, [even writing down its name sends a cold chill down my spine, no joke!], Dec 2016-Nov 2017, it did not stop seizures, one especially life changing, smashing my chest [fell off an exercise bike?], five ribs broken, two attempted suicides, walking with a stick, two thirds of 2017 spent in bed, about twelve hours of that year actually got sleep, sleep patterns did not recover for over two years after I stopped them. Unfortunately after double seizure in Jan 2018, am now on borrowed time, was not on eslicarbazapine (aptiom)? but either way it MUST be an improvement on Fycompa🥶 Good Luck!👍

Comedy profile image
Comedy

My son has been on a lot of medications but I will say Fycompa is the absolute worse. I don’t know why doctors prescribe that medication. It is awlful in every way!!He was on Aptiom and actually on it as a clinical study. Nothing worked until they put him on Depokote. He is now 13 months seizure free. We were happy to get through 3 days of seizures, grand mal horrible seizures. For 13 years he had 80 to100 seizures a year. He was so banged up and has actually recovered from shoulder surgery from multiple dislocation and honestly is living a different life because of Depokote. Lots of luck on Aptiom. I will say it is a much better than Fycompa.

car67 profile image
car67 in reply toComedy

Thank you for taking the time out to reply. Not a good medication, and I thought I was the only one suffering such side effects! I feel like a nuisance as I have been on so many different medications as the side effects are really bad, I have to say Fycompa and Zonisamide for me have been far the worst.

I am very pleased your son has been seizure free for that long , it sounds like had a quite an ordeal. Good luck and take care. X

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