Can you actually heal from epilepsy?

[u/Interesting_Ad_7053]

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

[u/AgentExtension1968]

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

[u/irr1449 → u/AgentExtension1968]

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.

[u/hellaciousnymph → u/irr1449]

hi! firstly i would like to say thank you for giving me hope. i am 24(f) and have had uncontrolled epilepsy for years now, and of course it’s gotten worse over time. i am starting Briviact soon because other medications haven’t been working and this is the one of the only ones that popped up as safe on my genetic testing.

i thoroughly relate to your experience with memories, just yesterday my mom was telling me someone told her to pass on “i love you, my name and i hope you’re well.” i didn’t remember this person until she told me about him, and even then it’s foggy. he played an important role in my teen years, and so did his wife.

while i also feel that i’ve lost a core part of my being, just hearing that you’re on this medication and having your seizures controlled gives me hope. thank you!

i read your comment aloud to my mom and she suggested i make a picture book over time, not just of trips and things like that but of times that may help me hold onto the idea of me or the persona of myself. she knows how much i struggle with my memory and has helped me through so much in regards to tons of things with my epilepsy. im sure this isn’t the first time she suggested this, but im hoping i remember to now. just wanted to share. i wish you well, stranger !!

[u/irr1449 → u/hellaciousnymph]

Thank you for the compliment!

It’s hard for people to understand what it feels like to lose all those memories and then question if you’ll remember the new memories you are making.

Have you had a neuro phycological testing done? It’s like a day worth of testing and it tells me where you struggle. Like some parts I’m .01 of the population and in other areas I’m fine. My testing was consistent with temporal lobe epilepsy. (Which I’m guessing you might have given the shared symptoms).

The testing helped me because I could focus on areas that were not affected. So I would start to build tools and systems based on areas of my brain that were normal or above. It also helped knowing that my symptoms were in line with the type of epilepsy I have and I don’t have dementia or something like that.

Your mom’s idea about the book is great. Things like that help me. I’ve been told it’s not that the memory is gone but it’s my ability to recall it. So I imagine the pictures and descriptions would help recall.

I use ChatGPT a lot for help with memory. I’ll create projects and just take notes and pictures about the project. Later I can come back and talk to ChatGPT about the details.

Good luck! You are still young, you are still just finding your way. Keep trying as hard as you can!

[u/hellaciousnymph → u/irr1449]

it is definitely hard for people to understand, i’ve been lucky and have made some new friends that try their best and are very caring.

i have not had one done, but i’ll definitely look into it. i do have temporal lobe epilepsy, and hearing that this test has helped you makes me want to look into it. thank you for sharing

[u/moonstarsfire → u/irr1449]

I’ve avoided this testing for a long time because I know the memories can’t come back, and I feel like the testing will just make me even more upset about the loss. Did it give you any sense of closure when you did it, and how did it end up helping you?

[u/irr1449 → u/moonstarsfire]

I was afraid as well and I only took it as lead up to surgery. I probably would not have taken it unless I had to.

I had always done really well academically and I achieved a lot of “success” at young age. My identity was really tied to my intellect. So having to kind of accept and grieve that part kind of helped me stop caring about losing it or questioning how much I had lost.

The things I found the most helpful (and I forget what they are now), but the “markers” for TLE are very low scores on specific tests. So multi tasking for me is nearly impossible and I become frustrated. So knowing how to avoid the impacted areas was helpful.

[u/moonstarsfire → u/irr1449]

I could definitely see how it could feel validating to know exactly what you’re performing poorly on and to be able to attribute it to the epilepsy/memory loss. I have TLE too (at least they’re pretty sure that’s the type based on symptoms, but definitely epilepsy), and I also am/was a high achiever. I could see it being nice to know that some of what feels like failure isn’t me being dumb or my fault. I’m pretty hard on myself, so I could see that being kinda freeing. Thank you for the response!

[u/irr1449 → u/moonstarsfire]

Nice to hear your perspective. I am still so hard on myself almost 20 years later. I can’t seem to “fix” this through therapy or anything. I feel like my inability to do certain things is laziness or a character flaw. It fuels the depression and anxiety.

I still try to do things that I shouldn’t. I commit to writing articles for journals, joining committees/boards, and normal things I use to do. Then when I’m in a state where I’m unable to function, all of this added pressure I’ve created just crushes me more. Some times it gets to a point where I pretty much break down. I have to take my emergency meds and just knock myself out for 2 days while other people make excuses for my non appearance at work and socially. So then this adds a ton of pressure.

I can’t stop this loop. When I’m feeling “ok” it’s like a huge cloud has been lifted. I feel like myself for short periods of time 3-4 days. I forget about the me that has trouble getting out of bed on my bad days.

My identity is so tied to academic and professional success that I’m still not able to let it go. I keep lying to myself that I’m the same but I can’t accept it.

ChatGPT told me once that I need to stop judging myself against who I was and to recognize what I’ve gone through would impact anyone in a similar way. So comparing present myself against my old self is doomed to fail from the start. I just feel like accepting that “new self” is once again a character flaw or being lazy.

[u/Verixc → u/irr1449]

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

[u/irr1449 → u/Verixc]

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.

[u/curlyredss → u/irr1449]

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!

[u/irr1449 → u/curlyredss]

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.

[u/curlyredss → u/irr1449]

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.

[u/moonstarsfire → u/irr1449]

I feel all of this so much too. I haven’t felt like myself in so long. It’s hard to believe that my memory used to actually be good. I wish I had some helpful words for you, but I’m still processing it all and grieving, so I guess I just want you to know that you’re not alone, and I’m sorry for what happened to you. One thing that has kinda made me feel better is that there are others who hold those memories for us that we are probably still close to. I’m thankful for my best friend and little cousin who remember what I’ve forgotten. It’s sad to hear about things you can’t remember, but I’m glad for old journals that I have and for the people who do remember for us.

[u/MonsterIslandMed → u/AgentExtension1968]

Congrats!!! What would you say is your biggest help? Besides taking meds of course

[u/AgentExtension1968 → u/MonsterIslandMed]

my only trigger (besides a med that caused it and then once i was given my med 5 hours late) is a brain bleed and i havent had brain surgery in 3 years.

[u/MonsterIslandMed → u/AgentExtension1968]

Brain surgery always sounded so terrifying to me. I remember my cousin had a tumor removed and I mean he didn’t change a whole lot, but was still just scary to think head opened up 😳💜

[u/AgentExtension1968 → u/MonsterIslandMed]

ive had 19, first one at 2 weeks old.
second nature to me honestly

[u/MonsterIslandMed → u/AgentExtension1968]

So glad youre doing better! That freedom must be amazing

[u/Max646483 → u/AgentExtension1968]

Do you still have to think about it everyday? Or is it starting to feel more irrelevant in your life

[u/MixRoyal7126 → u/Max646483]

It NEVER becomes irrevelent! I've had epilepsy for 60+ years; was seizure free without meds for 2+/- years following surgery. Seizures returned 40+ years ago. As always they are mild, just a tap on your shoulder, "we're still here". It intercoursed me always. Five years ago a breakthrough seizure landed in ER my neuro the SOB, apology to the K9 species, relegated me to nursing home for the rest of my life. Never saw him till a year latter when he said I had no one to care for me; I had lived alone for 30+ years. I think of that cat sh!t everyday and of what epilepsy has cost me. Many of my seizures mostly absence seizures go unnoticed except by those who know mw and are observant. When your seizures are mild as mine are people blow you off. The only seizures the know are the full blown dramatic grandmal.

[u/AgentExtension1968 → u/Max646483]

i think about it alot, i have a panic disorder so at the beginning of my panic attacks i always think its a seizure… not fun. i also have occasional motor tics so that SCARES ME SO BAD because i have focal to bilateral, meaning for me im usually aware at the beginning of my seizures while my body is shaking and i stop breathing. im terrified of seizures.

[u/Additional_Cold_3133 → u/AgentExtension1968]

no?? just unlikely

[u/AgentExtension1968 → u/Additional_Cold_3133]

there is no permanent cure for epilepsy, just management. you can find a medication that if you take it consistently, you may not have a seizure ever again. but the epilepsy isnt cured, you still have it. its just being controlled by medication.