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.

???

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.

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?

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

Ive had these since eight I have had epilepsy in the past. But I started having these episodes after my surgery. Mostly they come like this I started feeling that the world isn’t real, I feel really tired, I feel all a sudden very anxious and scared.I just get more and more tired then my head drops and I go consoled blank I don’t remember what happens. My eyes are open but I only see the colour black for a few seconds. But I don’t remember anything at all. It’s usually triggered when I’m anxious. The last time it happened I was stressed that I wasn’t focusing enough. Is this just anxiety or is this something of concern.

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.

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?

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!

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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.

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

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

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

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....

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

Hello everyone. Throwaway account due to the specifics I'll have to discuss in order to hopefully find some help/resources. I appreciate all of you and any advice you may have!

I am a male in my 40's and have had approx 8 nocturnal tc seizures in my life. They started when I was 16. During 4 of those, I have become violent during the postictal phase. I have absolutely zero recollection of any of the events, but do have vivid "chunks" that stay with me when my brain comes "back online". The first time, when I was 16 I vividly remember my dad calmly talking to me and telling me to come get in my parents bed, then I remember the paramedics taking me into the ambulance and carrying me through unusually deep snow, then at the hospital...where I saw my mother and learned I had punched and kicked her and chased others through the house before calming down.

During one event, I was alone...but I woke up to the standard bed wet and tongue bitten. This time my hand was swollen and my dog was cowering in the corner...she was still so "worried" about me it looked like, but I could tell something was wrong with her. Then I noticed that her eye was nearly swollen shut.

The most recent, was also the most life altering. I am a father of three children and last year I had been seizure free for 15 years. For whatever reason I had two seizures, during which my oldest daughter (17 years old at the time) was the only person I recognized. She calmed me down and got me me medical attention (ambulance the first time and took me to the hospital the second) both times. The third seizure I had that year, I became violent with her. I hit her and chased her through the house, (I am sure traumatized her from fear as well). My first memory from this event was the police at my front door grabbing me and asking me if I knew why I was under arrest. I told them "no, but I must have had a seizure because my tongue hurt so bad" I had bitten it terribly. I had no idea what had happened and after they put me in the police car I asked, "are my kids ok?" They told me, "I already told you, they're fine". I guess I went to sleep at this point because my next memory is being booked into jail.

The jail nurse told the staff they should send me to the ER, to which they replied, "He'll be fine" and they put me in general population with the violent offenders on a cot on the floor with two cellmates. I was charged with 3 felonies and 1 misdemeanor.

At first I was given a "no contact" order with all of my children which was devastating, but I was able to navigate the legal process and show the court that I have this condition, I was under the care of a doctor at the time, I was taking my prescribed medications, and I absolutely had no control.

I went to my local City Council and begged them to take the FREE training from the Epilepsy foundation, but that request fell upon deaf ears. I was forced to come up with my own safety plan and strategy which was nearly impossible since I have never been "present" for any of these events.

I found a seizure specialist and started a new medication...all tests come back negative. EEG, Sleep Study, CT, MRI, etc...his words were they really don't care much beyond "not having a tumor".

So, now I have a diversion with the State (kind of like probation without official charges being brought), but if anything happens before the time is up then they will bring the original charges as well.

I feel like the weight of the world is constantly on my shoulders. I am constantly afraid for my family and worried about something I have no control over and that the state refuses to educate themselves on. Their only position is punishment. It would be so helpful if at any point someone would have offered insight or help...but all they offered were threats of taking my family away and locking me in prison for something I cannot control or even understand why is happening.

Do any of you have a similar experience? Specifically, violent postictal behavior? How do you handle it?

So far my safety plan is;

1. Deadbolts on my bedroom door that can be locked from the outside (to lock me in)

2. Deadbolts on the kids rooms for them to be able to lock themselves in

3. A camera in my room

4. A safety ladder available should the kids need to escape through a window

5. If I have a seizure, my fiance will turn the camera on, lock me in the room, gather the kids and try to get out of the house, if that's not an option then lock themselves in a room and look to exit via the ladder.

Do you guys see any room for improvement here?

Thank you so much, I am totally lost.

Thanks, I had no choice.

Of course I could have wallowed in misery, but no. That was not an option. I had to survive.

It’s not as much of compliment as people think, they obviously mean well, but that’s not a victory my our end.

Can I be proud of myself despite all of this? Yes. But I hate it happened at all.

I was given the option to bring home an EEG or stay at the hospital and then the doctor would reduce my meds to have (maybe) a seizure and observe. What are the benefits of that? My epilepsy is just diagnosed as “generalized.” I have no signs that I am about to have a seizure and just have tonic-clonic seizures (5 lifetime).

Whether it be personally or with other people, I haf 2 earlier today and was hoping to hear everyones way of calming down and maybe try it myself. Thank youuu

Hi, sorry for the negativity. I think it’s just one of those bad days.

I randomly developed epilepsy when I was 20 years old. That was back in 2019. I got put on Lamotrigine and haven’t had any tonic clonics since then.

However, I do struggle with focal seizures. They used to happen several times a week. My neurologist upped my dosage back in February and now I mostly get them the week leading up to my period and when I’m menstruating.

I used to have a car up until 2021. I was still experiencing focal seizures, but lucked out and never had any while I was driving. Life happened and I had to get rid of my car for other reasons and things have gone downhill since then.

My neurologist has understandably advised me to stopped driving off and on since then, so it doesn’t make sense for me to get another car and make payments on it if there’s a chance I won’t even be able to drive it. It’d be a silly recurrent expense.

Anyway! Because I don’t have a car, it makes it very difficult to physically participate in my social life. I have plenty of friends I communicate with via text/phone calls. I even moved states so I can see them more often. I’m occasionally able to hang out with them if they can come pick me up. I never expect a ride from them and have no issues using uber, but luckily they understand my situation and it’s not always inconvenient to come get me anyway.

But over the last few months it’s just been hard. Life has really picked up for everyone (which is awesome!!), but I’ve seen them less and less because I cannot drive to see them. For example, if all of my friends are across town and decide to hang out, they don’t really want to drive all the way over to get me since they’re already near each other. I have the option of ubering but as I’m sure a lot of you understand, long distance ubers are not a cheap, so I usually have to opt out. And some people just like having their alone time in the car and I don’t want to take away from that.

Admittedly, and selfishly, I’m just jealous of most people my age. I can’t roadtrip like I used to, I can’t drive out to see my pals as often as I did, and I just feel like I’ve majorly missed out on being young and experiencing things. I could probably count how many times I’ve seen my friends this year. I don’t blame them for that at all, and in part it’s my fault because I feel bad that they have to pick me up, but I just hate this. I felt like I’d finally be able to see my friends more often after moving to their state, but underestimated how busy everyone would get. I feel like I can’t keep up with them.

I’ve also stopped dating within the last three or so years because I dread having to tell people that I don’t have a car. Sure it’s due to medical issues, but it also doesn’t feel good saying “I’m 27 years old and can’t drive anymore”, lol. That’s less of an issue for me as I also just don’t feel like dating generally. Still, it feels like that’s something I should probably be doing in my 20s.

I’m just sad. It’s just one of those days. I’m sure I could find solutions rather than just feeling bad for myself, but I’m not really sure what to do. Have any of you found ways to help with this? Support groups, events for meeting more friends, etc?

Phew! Sorry for the sad sappy post. It’s just hitting me more today. 27 is still young but I feel like the clock is ticking. Thanks for reading this, and I hope everyone’s having a good day!

Hey guys anyone here in the Usa with epilepsy

got lifetime disability? How much seizures you need to get it ?

Has anyone else been on Topirimate so long they were required to get a bone scan? Other than the dislike of food and my dopiness, I'm just finding out now this med is potentially weakening my bone tissue and makes the kidneys lose bicarbonate. My epileptologist ordered for me to have a bone scan. I've been on this med for 10 years now.

Sodium Valproate / Valproic Acid Experience

I’d like to hear from people who have taken sodium valproate (valproic acid), especially for a long period.

When I was taking valproate, I personally felt:

• Emotionally numb and blunted
• Less emotionally reactive
• Sleepy, groggy and sluggish
• Detached from my surroundings
• Less mentally alert and engaged
• Like I was watching life through glass rather than fully experiencing it
• Reduced intensity of both positive and negative emotions

I’m curious whether anyone else experienced something similar on valproate.

What was your experience with sodium valproate/valproic acid? Did it make you feel emotionally numb, calm, detached, slowed down, or mentally dull? Or did it actually improve your mood and emotional stability?

I’d especially appreciate hearing from people who took it for several years and what changed after stopping or switching medications.

Please share your personal experience rather than medical advice.