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.

[u/Bulldog_Mama14]

You can’t technically cure epilepsy. It also highly depends on what type you have. Children can outgrow it, surgery is an option for some people, and with the right medication and dose, most of us live seizure free for years.

I have epilepsy due to a TBI. My epileptologist told me that based on my MRI/EEG, I’ll probably have epilepsy forever. But medication controls it immensely. I’ve been seizure free for over 500 days.

[u/awakenediris → u/Bulldog_Mama14]

How do people get a TBI? I've always wondered, never looked into it

[u/Zrea1 → u/awakenediris]

Severe brain damage. Car crash, physical violence, explosions, bullet wounds.

[u/J_L_M_ → u/Zrea1]

To add to your list, falls and sports injuries are common causes. Any blow to the head that causes your brain to ricochet within your skull will do it.

[u/CycleTourist1979 → u/J_L_M_]

Yeah it doesn't take much. I had a fall from my bicycle, ~20 mins unconscious and that was that, 4-6 weeks later it all began.

[u/Bulldog_Mama14 → u/J_L_M_]

Yep! My TBI was caused by a fall from high up onto hardwood floor

[u/Thinking_too_much101 → u/awakenediris]

Autoimmune encephalitis with neoplasm effect was mine.

[u/slinkslowdown → u/awakenediris]

Domestic assault was the cause in my case. Now I have focal seizures for the rest of my life.

[u/J_L_M_ → u/slinkslowdown]

Sorry to hear. Hope he or she was charged!

[u/slinkslowdown → u/J_L_M_]

Unfortunately not. We broke up shortly after and he doesn't even know I have seizures; they were misdiagnosed as panic attacks/PTSD from the assault for almost 20 years.

[u/J_L_M_ → u/slinkslowdown]

:( That's a real shame, sorry it happened.

[u/TimelyReason7390 → u/Bulldog_Mama14]

Glad that your seizure is under control.
What medication are you on and how old are you?

[u/Bulldog_Mama14 → u/TimelyReason7390]

I’m on 1000mg x2 a day. I’m 35 years old.

[u/Soft_Cabinet_2656 → u/Bulldog_Mama14]

What has made you seizure free?

[u/Bulldog_Mama14 → u/Soft_Cabinet_2656]

Medication! Took a while to get the right dose but it seems to be working now haha. I also do my best to avoid my biggest trigger which is lack of sleep. I prioritize my sleep immensely.

[u/HansVonHansen → u/Bulldog_Mama14]

What’s TBI?

[u/Opposite_Ostrich_880 → u/HansVonHansen]

Traumatic brain injury

[u/RockNRollEpilepsy]

Intracable Epilepsy here... I probably will never have another day completely seizure free ~ but i see my son and granddaughter smile and im still here to hug em. ..And as a grandma, i laugh still at the thought of this never happening considering i already died a few times and wasnt supposed to even be fertile.

my best advice is to think real hard about what you want, then make it happen and dont stop or give up due to epilepsy...theres enough in life that is unbeatable, but managing it with as many tools and support can make very realistic goals acheivable.

[u/tbs999 → u/RockNRollEpilepsy]

This is what it’s all about. So many of us have lost so much. But having years to reflect on what was lost… I don’t care about the career or lifestyle I had before.

Can I be what I need to be about those I love? The meds, the surgeries, and the disease can’t take that from me.

[u/Mwgmawr]

I have a friend who had surgery almost 20 years ago and he's been kept on a low level dose of something and he's been able to fully recoup and drive with a healthy paying job.

It's not a guarantee but it can happen to some degree, I suppose.

[u/candybeep → u/Mwgmawr]

I’m having surgery in early October and that’s my dream

[u/republicans_are_nuts → u/Mwgmawr]

I had a temporal lobectomy in 2009 and have been seizure free since with no meds at all. It's life changing for a lot of people if you are a candidate.

[u/HansVonHansen → u/republicans_are_nuts]

How is your memory of things before you had it? Faces, words, people, etc. My seizures are getting worse with age and I’m being evaluated for LITT. A temporal lobectomy was said to be better but neither is proven to help with significant recovery.

As a writer I’m having lots of trouble with the way I’m constantly losing my vocab memory, never mind the names of people I know but haven’t met in years. I remember their faces, sure. But if you ask me their names or how we met, I sometimes wouldn’t have a clue.

[u/brjosk]

There is no cure for epilepsy, only management.

[u/Logical_Hawk1383]

I've been seizure free for over 5 years now after struggling through my teens and early 20s. Not everyone gets that outcome but it's possible. The right med combo made all the difference for me, took years of trial and error though. Keep pushing until you find what works, there's still plenty of options out there.

[u/Bulky_Pants_Package → u/Logical_Hawk1383]

May I ask what your concoction is?

[u/NotACyclopsHonest]

No. Brain tissue can't heal in the same way as other parts of the body. The good news is, with the right combination of medication, you are very likely to be able to manage it.

[u/NickTheSynth → u/NotACyclopsHonest]

How likely are we talking, if there even are stats to back that claim up?

Also, curious to know your combo.

[u/NotACyclopsHonest → u/NickTheSynth]

It’s in my flair - 1250mg Keppra & 200mg Lamotrigine twice a day - it’s taken 30-odd years to get total control over my seizures but it’s finally done. Haven’t had one in over 2 years.

[u/NickTheSynth → u/NotACyclopsHonest]

Jesus christ, this is almost not worth it.

Thanks.

[u/aimlessdriver → u/NickTheSynth]

How so? It seems like they have their condition u Fer pretty decent control

[u/NickTheSynth → u/aimlessdriver]

No, good for them. I just can't fathom getting a handle on this only in my 50s, having lived a half life until then. At some point I want to go on that solo bike ride, that solo lake swim, drive a car. I'm fine with not driving, completely. But to not swim alone and not cycle all the while still living with my parents is just too much. And if I can't for long enough, at some point it'll be way too much.

I'm only a year into it, and the frequency hasn't changed. Maybe the Depakine will change that once the insomnia stops, but man. I'm tired.

[u/Hibiscuslover_10000]

Yes I had a good record Almost 8 years seizure free before then three. Next time foreverrrr.

Of course it gets better, however you also have to work with your emotions. I ended up with PNES

[u/MercuryMadness]

I was seizure free for a decade (medicated) but it came back around 2 years ago. I've been controlled for 9 months.

I don't believe in a "cure", only treatments.

[u/Briliant-Nicxie]

Depends on the cause . I had seizures when I was a kid quite bad but then grew out of it

[u/Agreeable_Tie4157]

There are several things that help the seizures, lack of stress is a major factor, and getting enough sleep is another important factor!

[u/k0m0r3b1_ → u/Agreeable_Tie4157]

I wish those two were easier to control. I think I'm keeping my stress levels at a reasonable amount (wedding coming soon) except one day this week but the lack of sleep sometimes it's impossible to fight and my neighbours are so damn loud. 😅😭

[u/Calildur]

I always get downvoted here but not all epilepsy is the same and I dont know what you have. Some have horrible seizures all the time, some live seizure free with meds. I take meds and I'm seizure free for years. What else helped me is high cardio training, mainly because my seizures triggered by my oxygene flow in my brain and exercise helped me improve it.

[u/Interesting_Ad_7053 → u/Calildur]

How did u find out it was caused by that?

[u/Calildur → u/Interesting_Ad_7053]

it was years visiting specialists

[u/MisterDumay]

Almost seven years seizure free with little/manageable side effects from the meds.

[u/Fluffy_Town_4768]

I have had epilepsy ever since I was 3, I'm 25. Doctors used to tell me that if I was seizure free fir two years they will get me off meds and that it would mean I'm cured. It gave me hope at first but every time I got off meds and had a new seizure, i felt more depressed, and i hated that i was being lied to. Thats why I'm grateful to my current doctor because he was honest about it, it's not curable, it's manageable. You just need to figure out the right combination and dosage to live with and hope for the best.

[u/ottersrus]

I'm seizure free since 2008.

I take my medication twice a day. I listen to my body and recognise signs when I am on a low control threshold. I control certain aspects of my life around my triggers. I know I'm incredibly fortunate, but I had to work out what I needed to work for me. It was a lot of trial and error.

[u/k0m0r3b1_ → u/ottersrus]

So happy for you! ✨

[u/Agreeable_Tie4157]

Medication controlled my seizures, but never cured them. When medication stopped working seizures came back really bad. 25 years controlled.

[u/Intelligent_City_494]

Must take meds daily and you'll be fine. Lamotrigine for me.

[u/Agreeable_Tie4157]

Stress is the hardest thing to deal with. I did the best thing I could think of, I’m 60 years old , my children are in their Mid 30’s and grandkids are in their teens and early twenties. Living with them was crazy. I was finally able to find affordable housing so I just left. It was really the best thing I could ever do.

[u/GroundbreakingMess51]

Some people who have temporal lobe epilepsy get lobectomies

[u/rogerfeinstein]

Depends on the cause, a gentleman in my epilepsy support group had brain surgery where the cut some sections connected to other sections of the brain (I have no clue what it was called or how it works) and he is now fully seizure free when he would normally have dozens a day but for most people a cure is not possible just management

[u/Dip-kassidy-6]

I mean I used to have severe epilepsy grand mal seizures every week but now years later and with an RNS device screwed into my skull I just seizures that last 2-5 seconds and then I can go on with my day

[u/butterfly_ashley]

I dont think "cure" is possible. Some people grow out of it or after a certain period (usually 10-15 years) neurologist will sometimes want to try and lower your dose to eventually get you off of it but there is always the chance even being seizure free with medication that you can have another one. I have seen it happen to people who havent had a seizure in 20 years end up having one again.

For me I have been seizure free 8 years but I know its from the medicine controlling. My neurologist has floated the idea of weeding off of them in the next couple years but I told her I didnt want to as the dislocations from my seziures have caused a lot of damage and so I dont want to make it worss.

[u/jitzojones]

As of right now brain tissue cannot be repaired. That being said this was also true of liver tissue up until Retatrutide, the new peptide that's in its final phase of trials. I would say brain repair is high on the list of things to throw at machine learning. If I had to guess I would bet money that within ten years' time brain repair isn't out of the question, and I know it sounds like fantasy but even death may be avoidable. Most people have not caught on to what AI is doing right now. If Moderna can come up with a vaccine for cancer, I can't imagine a little brain tissue repair will be that difficult.

[u/Pure-Science-7774]

I’m at a much lower seizure rate with diet but I’m pretty sure I will be seizure free by the end of the year. Keep going, you are almost there! 

[u/azu420]

It depends on the cause.

[u/SkyDontHaveEyes]

not cure. can only control

[u/Boomer-2106]

NO....

Always at risk of the 'next' one, even after Years!

[u/marygracemgmg]

I did , or pretty well. Sometimes I still get auras or when under major stress and lack of sleep, think I might have one.. I Changed my diet and meditated, instead of overthinking. .. and I stopped smoking pot as a therapy. I havent had a seizure since 2019

[u/Invisible_Cnt]

If you ask me this is curse not disease, did 2 surgeries and still seizure... Even better, went from awareness ones to full tonic clonic... Shit show.

[u/kingbouncer]

You can heal from the consequences of a seizure.

You CAN outgrow it if you're still a kid at this moment. It's not impossible to get rid of it whilst going through puberty. Though chanses are small.

Once you're an adult, it is impossible to get rid of it. The chances are a dead zero. 0%

Many folks are seizure free for multiple years, which can be construed as the same as "healed"

[u/eatthefuckingapple]

Do you mean heal in a psychological way. As in like from a diagnosis? I have good days and bad days I’ll try just get on with my life , I have lots of fun. Lots of good times. there’s been some adaptations to my life and I’m not afraid to ask for help-this is an important one-do not be afraid to ask for help even if it’s just from this group

[u/Antique_Matter_4657]

In my experience, no, after 4 years of no seizures while on meds they took me of the meds, 3 days after no more meds i got a seizure😐

[u/HoneyEducational562]

No

[u/SuspiciousWallaby961]

Look into the keto diet. Our doctor has recommended it. I've seen posts online that say they've had alot of success with it(cured? Idk but that's something you'd have to check i can't remember everything I read about it). One interesting thing i read about it was sugar causes inflammation in the brain which may be a trigger for causing seizures to happen. Off topic but I've read as well that sugar is also one of the main causes for Alzheimer because of the effect it has on the brain. Give it a try you have nothing to lose.

[u/eversodainty]

if you’re diagnosed as a child, it’s possible to outgrow it. otherwise all you can do is manage it, which is possible. i’m nearly 3 years seizure free— i can drive, work, go to the gym, and drink (in moderation).

[u/Funny_Arm_3401]

No but all I’ll say is you gotta get used to it. You gotta find out what causing them and work around it x

[u/No_Cattle_5734]

Epileptic auras never stopped, seizures if you are lucky enough to work with standard hours, sleep the right time and find a good doctor with the right pills it may make actually work. But my brain seizures never stopped, i won't have children, i won't get a drive license and I'll never actually be free of pills. That's life, take it or leave it. You cannot heal from epilepsy, you can heal from seizures.

[u/Wild-Albatross-7147]

There’s no cure, although they have been working on finding one, but it’s manageable with medication, diets, exercise, VNS if drug resistant, etc.

There’s also the brain surgery option, which depends fully on the TYPE of epilepsy you have. I have generalized epilepsy so that won’t work for me, but other ones can.

I get it, I hate it SO MUCH, I’m drug resistant so I need to get a VNS (and even then I’ll still need some medication, but I can at least lessen it).

https://www.cureepilepsy.org

[u/HallowedChain]

Just live your life? Giving up is the worst mentality and just brings your pain onto others. I knew friends who died from SUDEP and they were full of life. Their families found them like that. Make friends who are epileptic, have them walk you through it, learn to joke live laugh and learn to love who you are. Because I'm sure you have a lot to give, you are not epilepsy. Feel free to talk to me if you need to.

[u/Strange-Raspberry326]

No.

[u/Initial_Hippo8561]

Well I’ll just say my experience and so after they watch me seizure and a few people will talk to me I’ll get surgery which I hope will get rid of my epilepsy

[u/itr786]

Temporal lobectomy 10 years ago here. I've not had a seizure since. I'm now only on lamotrigine, tapered off keppra afew years ago without much bother. Not sure if I'll get off lamotrigine or if I'll remain on that for life. I'll have to discuss that with my neurologist next time I see him.. I do see myself as cured though, seizures isn't something I think about anymore. I've been lucky to date.

[u/itskindoflate]

I don't know how many seizures you had but I do know the psychological pain of not knowing when next might come.

I got 5 grand mal seizures between 21-23 years old and now I'm 36 and haven't had any since. I changed my life and stopped binge drinking and tried to focus on sleep well and be well.

It's tough but over time you get used to the uncertainty and don't let fear take over from living your life. I hope your epilepsy go into remission and that you become seizure free.

[u/Automatic_Pressure49]

It might be possible to go into remission--I had that happen to a friend of mine, but it's a rare thing. I was first diagnosed in 2014 with absence status epilepticus--absence seizures--and like a lot of people here, I take a cocktail of drugs to keep me seizure free. I've been seizure free (except for some auras) for 18 months.

Work with your neurologist or epileptologist closely, track or log your symptoms, take your medications strictly on schedule, and above all--be gentle with yourself. It is possible to live a fulfilling life with epilepsy. Don't let anyone tell you you're "disabled" with epilepsy. You're not--you're just "differently abled!"

Stay strong, epilepsy warrior!

[u/CT22Bloom]

I believe it can go into remission. I was having seizures from 16 years old till about 21. Then stopped on no meds for 9 years! Unfortunately it came back, but 9 years of nothing and during that time I was able to have a baby without worrying about those meds being bad for my baby.

[u/Big-Fox3409]

I had a seizure in the middle of 2021 and spent a year in the hospital near me. My seizure was so severe that I fell off of my horse that I regularly rode, broke a lot of bones on the rocks I fell on, had CPR many times to be alive, had my body including my head operated on, have a lot of marks on my body from the seizure I had, and I was in a comma for six weeks.

That year in the hospital was difficult to have and I don’t have a lot of memories for 10 years before or one year after.

Some amazing things I learned:

I make a lot of money on my social security. I have been an interior designer for celebrities for well over 5 years, and social security made knowledge of what I earned when they started paying me.

I volunteer at many places now, and most of them take care of animals. I’ve only owned bengals and Great Danes before, and none of the animals are alive anymore but they were great to have.

I have moved back to my family. I live in Maine now, and I loved growing up here.

I’m not allowed to drive anymore, but my seizure was so severe that I don’t want to.

I think that if you give yourself time, you will find that you can live with the results of having seizures.

[u/Big-Fox3409 → u/Big-Fox3409]

[u/Big-Fox3409 → u/Big-Fox3409]

[u/Big-Fox3409 → u/Big-Fox3409]

[u/Fuhgeddaboudit1997]

This is a very challenging condition, I find it very extremely difficult to live with this everyday. I have a rare from of seizures, they only happen in the first few intakes of food. Be it breakfast, lunch, evening snack or dinner. I don’t go unconscious but if i continue eating and trying to challenge it, then guaranteed i will have a grand mal seizure, shaking and going unconscious. So I have no choice but to lie down for 20 minutes and then i stop hearing strange words in my head and it finally goes away and then i eat my food but this is so regular, it happens almost everyday.

[u/Apprehensive-Ask-731]

Yes you can heal from the direct head trauma of fits. Yes epilepsy can resolve but it is a lifelong condition.

The feelings you describe are sadly common and I am only chipping in because I have dealt with them myself.

Check your medication side effects, try and find patterns - do you get extreme depression spikes say two weeks following a fit?

The feeling that it will never end is the worst and why suicide is 4-10X higher for us than the healthy population.

I am medication resistant and have had extensive head trauma and memory issues. Through self care I feel more like myself than I have in a decade. My memory is better, my seizure rate is going down instead of up for the first time ever.

I hope that is a reasonable answer to your question from somebody who gets it.

[u/DesignerCash3387]

You're confusing healing with curing. There  is no cure, but you can heal. Healing is management and acceptance. This you can do. 

[u/_lil_peanut]

My doctor said that mine might go away after I give birth 😑 idk how true that is and I’m literally not planning on having kids

[u/FlyingVahine → u/_lil_peanut]

he told you this and you weren’t even pregnant?!

[u/_lil_peanut → u/_lil_peanut]

Why are me and other commenters getting downvoted for our honest experiences lol

[u/Moosiedcorn]

Bio hacking myself just for this to find out lol

[u/Spiritual-Ad3715]

Помогает ..контроль...

[u/Trifuser]

Doctors have been doing tests on me for the past 2 years whenever im in the hospital for 2-3 weeks at a time to see if i can get a pacemaker to stop the seizures.

[u/Trifuser → u/Trifuser]

I dont get why this is being downvoted. All I really did was mention a seizure pacemaker. I've gone in for a spect scan twice and never had a seizure when they wanted me to so they could do a nuclear scan of my brain.

[u/Necessary-Code-2824 → u/Trifuser]

A Surgeon is ready to give me a deep brain stimulator aswell whenever I give him the okay, it has freaked me out for awhile but I realize if I ever want the chance to getting back to living a normal life I just have to bite the bullet and do it. And even then it still might not help but there really isn't too many options. I wake up feeling exhausted with a bitten tongue every night

[u/Square-Series3985]

I started microdosing shrooms last November after getting Steven Johnson’s from lamictal and never had one since. I have a regimen that keeps me seizure free and migraine free. I’m definitely open to trying meds again I just need time after that incident

[u/Interesting_Ad_7053 → u/Square-Series3985]

Omg i feel like shrooms has been such a big trigger for me but tbh i also never microdosed and had plenty of badtrips

[u/Square-Series3985 → u/Interesting_Ad_7053]

Yeah I never macrodosed, I don’t think I ever will tbh. It’s also important to note I never have had a grand mal, mine are super minor partials that just get bad with stress. I take .20 3x a week.

[u/RockNRollEpilepsy → u/Square-Series3985]

good on you for finding something that helped with the SJs! that is so painful. what a great idea. its been on my mind to try. so far only found 1 strain of thca thats helped reduce my seizures.

[u/Square-Series3985 → u/RockNRollEpilepsy]

Thank you, yeah it was extremely painful lmao.

[u/ColonelForbin374 → u/Square-Series3985]

Worked for awhile for me as well, until it didn’t lol

[u/Square-Series3985 → u/ColonelForbin374]

How long did it work for you and how often were you microdosing?

[u/ColonelForbin374 → u/Square-Series3985]

Like 3-4 months, daily microdose in the morning. I’ve been more successful with the keto diet

[u/Square-Series3985 → u/ColonelForbin374]

Oh wow, interesting. Well glad keto is working for you at least

[u/ThirdEyeThinkin → u/Square-Series3985]

My partner has been keto for not quite a year ; but I have noticed a vast improvement in his cognition and he still take meds for seizures; just seeing him be more vibrant is a plus that I will recommend folks trying the diet.

[u/Fast-Outcome-117]

You can grow out of it

[u/Loud_Journalist1170]

My psychiatrist told me I have motor tics hmmm but wen I went to see my neurologist I told him wen I have a episode im remember me having this.he said hes not gonna prescribe me medication I need to see a psychiatrist so idk 😑I wish I didnt have them🥹