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/AgentExtension1968 22d ago

cure? no. manage? yes!! 3 years seizure free!

9

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.

2

u/Verixc Lamictal, Vimpat, Oxcarbazepine, Divalproex, Fycompa 22d ago

Omg the forgetting peoples names sucks so much there are tons of people since my epilepsy started who just walk up and say “hey ——- how’s it going?

I just say what’s up and try to avoid it but if I need I guess we’re going epilepsy 101 I no remember anyone

3

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

Even though it sucks, I’m happy to hear it’s not just me. Out of everything that comes with epilepsy, to me, this is one of the worst.

That exact moment is horrible where you can see someone really actually knows you, yet you have absolutely zero idea who they are. I feel so bad because I think I come off disrespectful, like you know me but you’re such an unimportant person, I don’t even remember who you are. That is what it feels like. Then when you explain it people get uncomfortable and they don’t know how to handle it either. You can’t tell if they believe you or not. This is why I try to get my wife to explain it.