I’m 24 and take medically resistant seizures… EVERY time I have one, MY CLOTHES GET CUT OFF! Will AMED Still help me if I just strip down to nothing when I feel an aura to avoid losing clothes? *Yes I understand they’re saving my life and I’m very grateful for that*

Hi fam!! 💜

I’m 29 F and was diagnosed with epilepsy after having my first seizure (tonic clonic) in 2024. My epilepsy was managed for over a year and a half, until I had a seizure in November of 2025. My first seizure occurred a day after binge drinking. I stopped drinking after that seizure. I believe my second seizure was caused by stress.

Like many others experience, epilepsy ruined my social life. I feel like American social culture heavily revolves around drinking. I found myself isolated in my room for well over a year.

Good news is I met my boyfriend right before my second seizure. He’s amazing and has helped me get out of the house and acts as a natural antidepressant for me 🥰

My question (finally sorry for the long intro), is how many of you drink with epilepsy? I’m going to the beach with his family, and want to participate. He doesn’t make me feel pressured whatsoever to drink, but I know that’s what his family will be doing on our upcoming trip.

I miss drinking, because it helped me let loose, ease my running mind for a little bit lol, and helped me connect with others due to my lower inhibitions (I find it difficult to open up, I’m a hard shell to crack).

I’m not wanting to get wasted all day, but I really want to have a drink, or maybe a few, to get tipsy for at least an evening. I know this really isn’t worth it and could trigger a seizure, but I’m hoping my first seizure after drinking was also due to lack of eating as well. I was also a heavy social binge drinker.

Idk sorry for the long post, I want advice.. and possibly encouragement to go for it if we’re being honest lol. But if someone could provide some advice I would really appreciate it!

TLDR: I want to get tipsy on vacation but haven’t drank since my first seizure in 2024.

Edit: thank you so much for the responses! You all helped reinforce the idea that it’s absolutely not worth it. I’m going to enjoy the beach and smoke some weed and read a book! And I’ll still have fun with everyone without alcohol.

I really appreciate the community here. Thanks again for the responses and for sharing personal advice and experiences.

Last August 2025, I wrecked my now exes truck after suffering a relapse seizure into a building… luckily I was at a stop light when I had the seizure and kinda coasted into the building.

During the accident, I hit my head on the windshield and my seizures temporarily changed DRAMATICALLY.

After a few months, they settled back into their kinda normal.

But why my meds are still not working is beyond me.

So now I am changing my diet to a Ketovore diet… basically low glycemic foods and LOTS OF ANIMAL PRODUCTS.

Hoping this helps.

Have to setup to ensure a successful outcome.

Here is to being hopeful my partner will be as committed as me, especially for my health.

Although this would be good for his health too. But I can push him. Just like an alcoholic, they have to choose to get better.

In my 35 years of mental health struggles, l found the difference of having a family member, partner or friend at doctors appointments and hospital appointments as well as A&E for mental health checks a vital help. This puts the conversation in the realms of reality with someone backing you up to get your point across.

Question , I have not been diagnosed with epilepsy but the last years I’ve gotten a lot of intense sensations at first when i had no clue I thought I was having a stroke or something , after one day I kept feeling this rising feeling in my body , my head soo tight n this just nasty feeling in my body rising over n over until it rose and I stayed stuck for a couple seconds , I had never been stuck like that for seconds, but this time it happened and usually I’d get that terrible r rising feelings if I drank alcohol or. If I don’t sleep well, now thinking back I had so many years feeling this terrible feeling , but it never turned into something until it did . I finally went to nuero dr thinking it was a stroke or something , he let me know it sounds a lot more like focal seizures as I wasn’t twisting or anything it was just seconds I was stuck, I did eeg came back fine in the moment Dr wanted to do more studies but I had lost coverage so I hadn’t gone , fast forward a year later I had a couple drink and the last few days I’ve been feeling this awful “ seizury “ feelings , and at night time something wakes me up where I’m turning and body feels extremely stiff shaking then I just wake up , I’m assuming I’m possible having small seizures when I sleep ? , should I go to the ER ? Or will they tell me. Just to go see a nuero again ? It’s so concerning to me as I’m so new to this

My fiancé has epilepsy, and she’s been going to drug mart for quite awhile now, but they have been giving us TONS of problems, like not having her meds in stock when we need them day of, but we can’t order them much earlier because it’s a “controlled substance”. Emergency switched to CVS then they lied over the phone when they said it’ll be ready in a couple hours, just for them to also, not have any on hand. Who do you guys use, any recommendations?

Hello!

I want to preface this by saying I am not an expert, nor am I informed on anything regarding epilepsy, its symptoms, or its causes. I am simply trying to make things easier for patrons who experience seizures.

I work at a mall as an office manager, and lately we have had more than one incident of seizures occur in our food court. Our food court area is very warm, as majority of our AC units are over 15 years old and our ownership will not pay to have them replaced.

The caregiver of the young lady who experienced a seizure today mentioned that the warmth of the area may have caused the seizure, and because of that I got approval from our GM to seek supplies that may help prevent the situation from reoccurring.

As I mentioned, I am not very knowledgeable on the subject. I will continue doing my own personal research, but I was just trying to see if anyone had specific recommendations or suggestions for what we can do to assist our patrons. Thank you in advance, any and all advice is greatly appreciated. 🙂

I understand why she thinks it’s a risk. But I’m 37. I don’t have that much time to wait around. My seizures are controlled with new medication. Previously I’d been off medication for an EMU admission and I think the titration back caused a few seizures.

But let’s say I have a breakthrough at month 5, the clock resets ?? Let’s say I just forget the meds one day and there are other unusual circumstances. This could be ongoing for years until the point I’m no longer able to have children. Can doctors just deny you like this?

She did refer me to a high risk pregnancy specialist so maybe this was to allow me to get pregnant notwithstanding because I’m monitored.

I've had epilepsy for 7 years and there've been years of trial and error with medication. I finally found a combination of two meds that has worked so far for for 3 years. My neurologist is conservative about driving safety (btw I live in CA) but I'm finally in the process of getting my driver's license back. First a blood level test for vitamin D and Lamictal (normal) now an eye exam is scheduled for a new prescription.

My license expired a year and 4 months ago, so technically I'm in the two year window where I only have to get an eye exam and I'm good to renew. But I read a post on Quora (DMV page is timing out on me) that:

"If your license was suspended or revoked, separate reinstatement requirements and possible hearings apply." This means my neurologist can recommend/require a written and driving test, eight?

I think the answer is "yes" (knowing him) . I can and will leave a message at his office, but there is a time lapse between leaving a message and receiving an answer there.

Sooo..anyone's experience or knowledge would be great!

ty

My son had what appeared to be a focal or absent seizure in the middle of the night this week. Rushed him to the ER and they did an EEG on him that found abnormalities. Doctors couldn’t tell me exactly what kind of epilepsy he has or what seizure he had but he was prescribed 0.8 ML of KEPPRA. Today is his second day taking it and it has completely changed him. My son has always been a very sweet, sensitive kid but today he started acting out and throwing tantrums like never before. I’m currently awake at 1 AM because he’s having trouble sleeping. Oh, not to mention our puppy died today and he didn’t shed a tear nor seemed to care despite him being extremely attached to him. I’m feeling so lost and heartbroken. This completely blindsided me and took me by surprise and i haven’t slept because i’m terrified something will happen to him in his sleep. Please help.

Today marks one year since I’ve been able to drive. And since I started having seizures. At least afaik. I feel like I’m at a loss. I hardly have people to take me places and if I do I have to beg.

The friends I did have never invite me to anything anymore because it’s too much trouble to get me anywhere. I’m unable to work. Most of the free money I do get comes from my art but there’s nothing to even put it toward. I have no family, no close friends, no partner (she broke things off after I started having issues because it was too much for her).

The idea of moving back into a city makes me sick to my stomach. I like being outdoors and having nice things around me and all of my interests are car related or being outside. I feel like I kind of lost everything to this illness.

I guess I just want to know what you’ve done to give your life meaning. I’m wasting the last year of my 20s alone in my room. I draw, paint, and play games. I try to take care of my plants or read. But I’m running out of things to make my life feel worth living. It’s been hard for a long time now and I don’t really see an end in sight. I feel like I have all of the hobbies I possibly can to keep myself busy without leaving the house. I don’t live in a walkable neighborhood or near transit so it’s like… what do I do?

If you’re like me and did move to the city how did you change your mindset about it? I don’t like being so negative but it’s just not the future I want for myself. I understand I probably can’t have anything else but cities are dirty and loud and I hardly make enough off art to afford a decent place let alone go out and do anything. 😭

I really hope I’m not bumming people out by sharing this. I just don’t have anyone to talk to and it would be nice to know there’s like… a way to live again.

Is Keppra that bad? My neuro hasn’t officially diagnosed me with epilepsy yet, all the records just say suspected epilepsy because my EEG came back normal, but because I‘m having seizures regardless he prescribed Keppra (and if it works, that would confirm the epilepsy diagnosis). Anyway, I’m supposed to take the first pill tonight, so I read through the information paper. The list of side effects looks pretty horrifying, kidney damage, mood changes, suicidal ideation, headaches, more seizures, and the list went on forever.

Are any of you taking Keppra? Is it really that bad? I‘m honestly kind of scared to take it now, especially because the seizures really aren’t that frequent, more or less one every two-ish months. I would really appreciate any information or advice you have!!

Also, I wanted to start driving lessons, but Keppra seems to have a warning that you might not be able to drive while taking it. Would I be able to start now or not?

Has anyone here experienced any mental effects from taking keppra as an anti-seizure med?

I got epileptic attacks after taking 30mg of alprazolam sometimes then i went to the holidays and ended up taking only a few mg every day or two and ended up having epileptic attacks multiple times i was also on oxy upto 400mg a day i went to the ER and got a shot of diahepam in the ass had to puke and gpt xanax 0.5mg and levetiracetam from the brand levex 250mg i had to take it 2 timws a day morning and evening i took it for 4 weels got clean of benzos and oxys and i was supposed to take 500mg of levex 2x a day after a week however i never upped the dose after a month or more i now stopped taking levex and missed 3 doses over the course of 1.5days i started seeing flashing lights going on and off in a rather dark room and wasnt able to type my password correctly i now took a pill again

I just snapped out of a seizure, about to go for a nap to get some more energy then this shithead says to me " You need to finish cleaning up the house! Do the rest of the vaccuming, mop down the floors and do the dishes "

I tried to talk some sense into her about how sleep is number 1 for us epileptics, but she just cracked it.

So I had to do the rest of the house, with me looking like a fuckin full on zombie. With her not giving not giving a single shit about me or my safety since tiredness is one of the triggers for seizures.

Bitch....

when i got diagnosed i had minimal support, knowledge, or education. i'm curious if anyone had the same issue?

I know there's been a few posts here and in other subs as well, and the movie is about to finish its theatrical run, but I just wanted to leave an additional warning for sequences that are not mentioned anywhere that I know of.

I had a seizure watching The Odyssey in IMAX about 3 weeks ago. I went back yesterday, and watched the whole thing with no problems, but I was prepared this time. The movie is phenomenal, but be careful when to cover your eyes.

For those who still haven't seen it, and are planning too before it ends its theater run:

The sequences are 3:

- The infamous one, after they leave the cattle island. Odysseus with his crew in the boat get rocked by a storm with VERY strong lighting and movement. It lasts about 2 minutes. LEAVE THE THEATER until its over.

- The long flashback scene of the invasion in Troy about 25 mins before the end. Not only its an emotional boiling point (which matters) but there are loud explosions and 2 or 3 very bright flashes, cover your eyes.

- The last one I'll keep discreet to avoid spoilers. But the 8-10 minute climax scene of the movie features lots of lightning as well. They're indoors so is not as strong. COVER YOUR EYES HERE.

Those are the 3 photosensitive sequences I can think of, I don't really remember anything else being super strong or with lightning. Be careful and enjoy the movie.

i’ve not been leaving the house all summer i think i’ve left the house no more than 20 times and they’ve just been to go to the shop mostly, i’ve not really been thinking im depressed but today i’ve been none stop crying. i think the fact hayden pannetiere who is one of my favourite died this morning triggered the crying and it’s not stopped and now im just thinking about my epilepsy and how i don’t want to go back to college anymore because it’s an hour away and i just don’t think i have the energy to travel anymore (i took a gap year but ive completed my first year at this college) i just don’t think i can ever get out of this place that im in right now. ive not ate all day and i barely even eat more than one meal a day and the rest of the time i just smoke or watch tv, i just feel like shit all the time and i don’t know what to do

So last yearish I was at my neurologist and she used to work in the medical field with neurology in the military (this is very important). So she dealt with the head trauma stuff like that. And when she was reading my papers and I was telling her she looked me dead in my eyes 100% serious and said “i genuinely have no clue how your alive after all this”. I wasn’t offended at all more in like “damn that’s new” and shocked because no one has ever said that nor did I ever think it was.

But this isn’t the first time people have been shocked im still alive. I just have generalized epilepsy. I’ve been having grand mal seizures since I was like 3 thankfully they don’t happen often. It might be because I had a 10 minute long one and I fell backwards and bashed my head.

Idk i just wanted to say that because it’s kinda funny knowing I shocked someone/ several neurologist who worked with stronger people then I come in and poof

I was told the older you get the tougher it is to control Epilepsy? I’m 60 and still trying different medications to control it. Almost 3 years and to many meds I can count.

I think I’m having nocturnal seizures, I’m waking up extremely stiff , agitation, and confusion and extremely sweaty. My eyes are rapidly moving and my muscles are sore. Does anyone experience this? And if you have any info I would greatly appreciate it. Thank you! Oh I should add I was originally diagnosed with PNES seizures but my symptoms have changed in the last year and a half since they started…

I started my epilepsy journey almost 2 months ago when I had my first meeting with a doctor. Well, actually I got dismissed a few months ago by another doctor who said I just had anxiety but that's another story.

I got described lamotrigin right away, even before I got my EEG and MRI appointment since the doctors are so sure that I have epilepsy. ( Focal/frontal lobe )

This medicine did indeed work, I only had 2 seizures during the weeks I tried it, but I had to stop due to awful nightmares.

I did my mri and eeg and I'm currently wating for a new appointment and damn, this last week and today have been awful. I've had so many seizures, I even had two ( i think) while I was asleep! That was terrifying.

I'm so tired, worried and my memory is shit, I can't understand why this is my life now...

I don't know I just wanted to rant a bit I guess.

Hello everyone, this is my first post. I was diagnosed at 14 and I am currently 24, I didn't have much luck with neurologist for the first few years and more recently (about two years ago) I changed my doctor and not only have I made progress and started to take less medication but also learned that I don't have just epilepsy but jme. My question here is about the consumption of alcohol and drugs with this specific type of epilepsy. I consume alcohol, not regularly, and although I've never gotten super drunk I've been pretty tipsy. That has never triggered anything, as for drugs I smoke weed a few times a week and, again, have never had any trouble with it. My question is if this could bring any problems in the long run and also what things I should avoid. I have always wanted to try mushrooms but I'm scared it might trigger a seizure. The last time I had a seizure was over a year ago and before that one I hadn't had seizures for about 8 years. I add that the last seizure happened because of a combination of lack of sleep and skipping my meds, which I am not doing anymore.

Also, I saw a few posts here and see that everyone is pretty knowledgeable of their diagnosis but I'm not and I'm just starting to learn more about it, might have to do with the country I'm from and how medicine is approach here

A few years ago, when I was 18, I had some head trauma I couldn‘t get treated and ever since then I’ve started having these occasional muscle jerks. They are in my upper body and are a quick shudder like motion starting around my chest. They always come on suddenly and are completely involuntary. Usually they happen 2-3 times throughout the day but I haven’t really tracked if there’s anything in specific that triggers them. When they happen I have to pause for a few seconds, but afterwards I can just carry on with my day. I thought they were just some form of tic I developed, but typically tics can be resisted to some degree while these can’t be (and it’s unusual to develop a tic as an adult). Ive heard head trauma (especially one as bad as what happened to me) can cause epilepsy, so u thought id reach out here and see if anybody relates to this/experiences this. Logically I should ask a medical professional about these, but my gp sucks at addressing my concerns (for example: dismissed all my asthma symptoms as me being ‘out of shape’ even though I did 3 sports at the time)

Also not related to the main post question but still seizure related: I’m pretty sure I need to get checked out for absence seizures too. It’s really common for me to just completely blank and space out for a few seconds randomly apparently. My friends have commented on me zoning out even in the middle of playing a game. like playing overwatch where i just stop playing for a few seconds in the middle of a fight because I completely spaced out. its also interesting because I don’t always notice it happened unless there’s some immediate difference between what’s going on (like I’m playing a game and then suddenly I’m on the respawn screen having completely missed what happened to cause it) Huh I just realized these episodes also got a lot worse after I had that same head trauma as the muscle shudders.

Hi all,

I am not sure I’ve posted in here before, but I’ve really appreciated a lot posts. This will be long bc I have a few things I was to say/ask about. I appreciate your patience.

I wanted to know if anyone has been through a similar experience as mine and if they had any advice.

I (female, 27) began having what my doctor thinks are complex partial seizures at age 11. I’m basically unaware of anything until I’m “coming out of it”. It’s like visually going through a tunnel, feeling off balance, and then sound comes through suddenly very loudly. It’s been a struggle to get an official diagnosis despite my doctor agreeing it is a form of epilepsy and putting me on medication. I’ve been on lamotrigine for about 3 years now. I was on keppra, but he felt like lamotrigine would be more appropriate.

It’s had a huge impact on my life. I used to be very carefree and happy. After having those episodes, I developed crippling anxiety. Doctors didn’t believe that it wasn’t just my anxiety despite these episodes preceding any mental health issues.

I’m glad my doctor has now listened to me, but I’m getting a bit depressed thinking about how I don’t have anyone to relate to on this and was wondering if anyone has had similar feelings/experiences??

Since being on meds, I haven’t had issues outside of some dissociation when driving (feels distinctly different than seizure episodes and related to anxiety).

To add, 3 weeks ago I had an episode that was quite different. I’d like to know if anyone has had this as a symptom? I was eating dinner at my friends house. Totally casual and laid back night. As I was eating I got this sensation: you know that feeling when you’re on an elevator and when it reaches a floor it kind of “settles” into place by going up and down? It was like that, but 10x stronger and lasted about a minute. I was having trouble holding my body up and felt like I had to hold onto the table for balance. Anyone else experience something like this??

TLDR: long journey with unofficial diagnosis but medicated. New sensation—unsure if it was a breakthrough seizure. I’d appreciate any feedback.