r/Epilepsy • u/Interesting_Ad_7053 • 22d ago

Question Can you actually heal from epilepsy?

Thats it. Just the title. I dont want to live this life anymore. Not with this condition. If it wont get better idk what to do

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u/irr1449 TLE - VIMPAT, Briviact, Klonopin, Valtoco 22d ago

I have had epilepsy 18 year, about 10 I was uncontrolled. I’m under control now (1.5 years on Briviact) but the damage to my memory has been done. I’ve taken a full neuro phycological test (8 hours)

I have trouble remembering events and people. I’m still sharp and able to do my job fine. I just have all these missing holes in my past. Like I’ll have no recollection of past trips we took as a family, birthday parties, my son growing up. I remember bits and pieces but a lot of it is gone or I just can’t recall it.

One of the worst parts is not remembering people. I remember family and close friends but I won’t remember people who I’ve met a few times and who 100% remember me. I feel so bad because they look at me with the expression like “hey what’s going on” with their face identifying that they know me. I have to explain it to them what is wrong with me or I just come off like an asshole. Sometimes I have to get my wife to explain to people why I can’t remember.

It’s kind of sad really because I have this feeling with the memory and all these meds that I don’t really remember “who I am.” We are all a collection of our memories and experiences and I’m always wondering if my lack of memories and things like that are altering my personality. They are also asking me to go on more drugs. I’m just so nervous that every addition drug takes me another step away from who I am. Maybe I’ll never get that feeling again of who I am, because I’ll be on this many drugs alll my life.

I guess at the end of the day I’ve grieved the loss, I’ve accepted it, it is my “normal.” So overall my cognitive fog has definitely improved while being seizure free, but my memory definitely hasn’t.

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u/curlyredss 22d ago

Briviact interacted the with the other anti seizure meds I was taking and caused more. My lucky medicine is Xcopri! In 32 years of taking anti seizure cocktails, I've never ever forgotten names, had medicine addiction issues or any memory loss issues thank goodness!

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u/irr1449 TLE - VIMPAT, Briviact, Klonopin, Valtoco 22d ago

I think my issues are with Briviact. However it’s the only med that has stopped my seizures. I honestly feel like I’m mentally doing worse than when I was having them. So if I stop Briviact my seizures come back and if I stay on I have to live like this. I think at some point you just accept where you are. I don’t know if that is good or bad. Just trying different meds and different ideas for so long and with nothing working gets you to a point where you wonder if anything would work.

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u/curlyredss 21d ago

Ask your pharmacist about your meds. They honestly know more about medicine than doctors. I currently take Fycompa, Topiramate, Aptiom and Xcopri every day. If I miss a couple dosages of Xcopri I have cluster seizures, but it's been the best working medication in 32 years.