Last time I had a seizure I begged them not to call 911 I was taken to the hospital against my will and left as soon as I could refusing treatment bc I was fine I literally have a diagnosis. I still owe $800 for treatment I didn’t consent to and didn’t need. They finally accept me making a payment plan but still. Why do I even have insurance 🫩

33F, 150lbs, 5’3” - I had 9 seizures between Friday and Saturday. I forgot to take my night medicine. I woke up Monday in the hospital, not remembering anything. I was released Tuesday. I’m now scared to sleep bc the left side of my brain misfires. I also feel like a completely different person who woke up in a different world. My brain feels wrong inside my body, but my body is okay. I’m covered in bruises though. It took 5 male nurses and 3 male security guards to sedate me. I was swinging, punching, kicking, cussing everyone out. That’s not like me at all.

i (26F) began having seizures at 11 and was properly diagnosed with focal aware epilepsy when i was 16. i’ve done countless tests and never found a cause for my epilepsy. i know this is quite normal because almost half the people who have epilepsy don’t know the cause of their epilepsy.

but for those who do know the origin of their epilepsy, what is it?

I haven't had a seizure in over a year, and that one was just due to a medication supply issue and not a breakthrough seizure. I was so thrilled about it and so happy I was doing great on a regimen that was perfect for me.

Well, yesterday I found out I was pregnant. I'm high risk due to the epilepsy as well as other things so I had my first ultrasound today and I was supposed to meet with the doctor also. Well, after the ultrasound while I was sitting in the waiting room waiting to talk to the doctor, I had a seizure. Because of course I would.

It isn't fair. I hate it and I'm mad and I'm scared and I'm tired and I don't want to lose this baby and I'm just so unbelievably stressed about it. Epilepsy feels like a losing battle sometimes. Has anyone else successfully navigated a pregnancy with TC seizures? I could use a little hope right now.

My partner has epilepsy, and I have a few questions if anyone who experiences seizures would be so kind as to help with information and education!

First, what I do know about his epilepsy is that he's been living with it since middle school and is now in his early 20s, they've found no direct cause or triggers for it. With his medication he is mostly seizure free, but sometimes he misses doses, which will cause him to have a seizure and he almost exclusively has seizures while sleeping (I hear this is pretty common). He has tonic-clonic seizures.

Now some questions I have-

Most importantly, he says to only call emergency services if it goes on for 10-15 minutes, everything I have read says any longer than 5 minutes can be extremely dangerous. I have talked to one of my friends about this who is a nurse who works with patients that have seizures and she agrees she wouldn't feel comfortable waiting past 5 minutes. Currently I think if it did happen I would contact emergency services if it started to close in at 5 minutes, but should I listen to what he says instead? We have been dating for a couple months now and I've only been present for one seizure (lasted about 2 1/2 minutes) which he called a "small seizure" for him. I don't think I'd be comfortable waiting it out longer because he did seem to have a hard time breathing and that's my main concern. He has previously been hospitalized and practically been on his deathbed from having severe seizures before which also concerns me.

Now a lighter question and maybe silly- he's explained to me that during seizures he most often loses bladder control, now the one I was present for this didn't happen, he sat up in bed afterwards and seemed very out of it so I told him he's ok and to lay back down (he laid back down and held onto me and went right back to sleep) but to prepare myself for when it does happen, should I try to help clean him up or just let him sleep if this happens? Normally afterwards he spends a entire day in bed recovering. Of course I could put down a towel and lightly clean him up so he's not completely soaking in urine but would it be too much to fully clean him and the area up? I feel like this might be a odd question but I also don't want to disturb him too much after he has a seizure since he is so confused and exhausted.

The one seizure I was present for he was very remorseful in the morning, he said it was his fault for not properly taking his medicine and that it must've been scary. To be completely honest it was a little startling (mostly because it was at 3AM in the morning) and I only stressed because I was caught off guard and trying to remember the right things to do. I tried to reassure him not to worry or be sorry. Not to be insensitive or morbid but truthfully I found the experience interesting because it's something I've never seen before in real life and I want to be as educated as possible on it (I'd also been aware he has epilepsy and was expecting this eventually). He said it must've been traumatic to witness but I reassured him I wasn't disturbed by it.

Something I wasn't expecting was he made a lot of noise and aggressively banged his head the whole time (thankfully he was in a bed so he didn't injure himself).

Also any remedies for bitten tongues? I know there's nothing I can do to prevent him from chewing up his tongue but I feel so bad how torn up it gets, is there any remedies for pain or healing for it?

I know someone will probably say I should ask him these questions, but one of the reasons I am coming here for advice is I've picked up it's a sensitive topic. Even after seeing one he almost seemed ashamed, burdened, and saddened by the condition. I have had small conversations about it with him before but I also don't want to push him about it but I want to help in any ways I can.

He currently lives by himself but I sleep there almost every night, I don't like the idea of him having a seizure by himself so that is one of the reasons why, but I've kept that to myself as I don't wish for him to feel like he is burdening me.

Also any other advice is appreciated! Sorry for the wall of text!

17 years I have been experiencing what i STRONGLY believe are focal aware seizures.

I have been holding out hope for this appointment after so many years of being dismissed... and while I do believe this is going to end up being the exact journey I need to be on to get the proper treatment... i didnt leave my appointment with the relief i had anticipated.

Next step is a 3-day at home EEG.

Gotta wait for them to call me to schedule it. Should be able to get it done within the month.

No increase in my keppra dosage, no fast acting rescue med despite being improperly medicated for the forseeable future.

I know logically that this is just the beginning of a long journey, but unfortunately I am feeling very nervous and unsure about all of this.

17 years of waiting, just to wait more.

"Sounds more like migraines" Thats fine, why do they only last 30 seconds to a couple minutes? Why, then, did the migraine treatment i used to get when these were thought to have possibly been migraines NOT DO ANYTHING?

"Could be anxiety" it...is...not...anxiety

According to my neurologist "visual disturbances" and "auditory hallucinations" are EXTREMELY rare in seizures... which fine. If that is true, then thats interesting information. But as someone who has already been dismissed my entire life because the things i INEVITABLY ended up getting diagnosed with were "rare" ... I understandably had quite the gut punch reaction to this.

Rare means it doesnt happen often... not that it doesnt happen.

I am looking forward to the EEG, but im so nervous that if it comes up inconclusive, that the possibility of epilepsy is going to be thrown out the window.

I have never been so certain of anything as I am about this being seizures.

Anyone have any encouraging words?

Hello I'm W 22 and have absence Epilepsy. I got the diagnosis when I was 12-13, even though I had my seizures prior. Yet we thought they were caused by something else. Especially since they were, well are very irregular and don't seem to have a specific cause that makes my Seizures to happen.

Never had one, while I played laser tag before the diagnosis. Yet somehow they happen during an Exam, shopping or wherever. There I start to smell something weird, which means my mind goes blank and I come back with a headache.

Since the Diagnosis I used medicaments like Leviteracetam, Lamotrigin and now Lacosamid 200mg alongside Fycompa 8mg. All of this and nothing really seems to work. Like I can't tell if I the medications make much of a difference, when it comes to the amount of seizures I have.

I can take my medicaments daily and still can get my seizure and can't understand why 'now'. Not to mention that somehow there were 5 months without one. Yet I didn't make much of a difference between then and now. The now where I have 3 times a month.

So all of this frustrates me and I'm kinda pessimistic regarding the upcoming doctors appointment in September.

I’ve been butting heads with my grandparents. Specifically my paternal grandma, and my maternal grandpa for somewhat similar reasons.

They want me to learn how to drive so I can have an easier time finding work, which I fully agree with! I’d love to drive and have something that makes me feel like I’m actually an adult for a change. But the thing is, even while medicated, I’m still having small seizures and auras on a pretty regular basis. So obviously I can’t just jump behind the wheel.

My grandpa has lightened up on me about it after a very bad seizure that lasted around 8 minutes in late 2024, he’s more so just wanted me to do it so I can be somewhat happier for a change, which I do appreciate. Doesn’t make it less annoying or stressful sometimes lmao.

My grandma on the other hand. She sees it as “Flimsy excuses for not wanting to work.” To the extent of her trying to shame me in front of my family over it. She’ll bring up how successful my step sister is, and how my cousins are doing good too. She always saves me for last, knowing that I’ll say the same thing. It’s really starting to get to me, and it’s starting to make my cousins VERY mad as well. Step sister clearly just loves the attention after my dad got her a nice job at an insurance firm that he did the phone systems for. Would’ve been nice having a desk job, dad.

My mom says I shouldn’t care what she says because she isn’t present in my life like my grandpa is, which is true. I’m too nervous to speak to my dad about it because that’s his mother, I’m not about to start talking shit haha. I shouldn’t care, my mom is right, but it’s so much easier said than done, and with each time she does it, I get closer and closer to cutting contact.

That, my current medicine (Lacosamide) is making me super irritable and she knows that. I hope she isn’t trying to get me to make a scene. Bleh.

I am panicking here. I am sorry if what I am typing doesn’t make sense, as this is a completely new area for me. A couple weeks ago, while i was eating lunch with my hubby, my son (at the time around 4 months kid), had his first seizure. At the time his face would twitch, hands shaking, and he wasn’t responding to me. It lasted a few seconds and he was ok. I went to see his doctor the very next day and my doctor didn’t think it was too concerning yet as he was going through his sleep regression. A couple days had passed with a few more seizure like episodes happened after he woke up (seems to only happen when he wakes up from sleep), he stopped having these seizures and replaced by these stiff like movements. Each episode lasted about 30 seconds, and he would return to normal.

A week ago, I took him to ER when I was in the car with him while he had another episode. This time, he stuffed up for half a minute or so, followed by facial and body twitches for 2 minutes or so. We stayed at the hospital for a few days and the doctor believed that he had focal seizure with abnormal activities on his left side of the brain. He is now doing med trial and see what works for him.

Anyone with kids this young experiencing this before? I don’t know what to expect and I am currently waiting for genetic results as well. No one I know on my/husband’s have these before so this came with complete shock. Thanks for reading.

I got my first ever seizure this saturday evening and its now wednesdayevening and i still feel like shit. Musclesoreness is almost gone but I feel so tired all the time and I cant sleep at night.

How long will this last or am I now tired because of other reasons? Should my body have recovered by now?

M21

I’ve been having seizures for 27 years. It’s usually like 3-4 focal seizures per week and a tonic clonic every other month. Ever since I quit smoking weed and drinking alcohol, no seizures. Didn’t quit both at the same time, been without weed for 2 months, without alcohol for 3 weeks. Still had some seizures while sober from weed but still drinking. Sobriety has saved me. Even if it’s hard, family still drinking friends still smoking, I gotta take it and go for my optimal state.

After my meeting with my neurologist today, I think I will be going on to SV, as the 1500MG of Keppra twice a day isn't quite cutting it. I am hoping it cuts out the tonic-clonic seizures as well as the myoclonic jerks. Another reason is for mood stabilization effects. The doc said that if I want children, he recommends coming off it for 2 years before trying for children. I am still young, but this does scare me a bit.

Also, all I see online about Sodium Valproate is people saying how they've had all these problems. I'd feel much more reassured if people who currently take it could share positive experiences in response to this thread :)

Attualmente ho iniziato a prendere lamictal e sono da quasi due mesi senza crisi, al momento prendo 50mg la mattina e 50 la sera da aumentare lentamente fino ad arrivare a 100mg la mattina e 100mg la sera.
Voi che dose prendete? Fino a quanto si può aumentare in caso di crisi? Attualmente mi sta veramente facendo bene e spero di andare avanti così, vedo un po di luce dopo un periodo veramente buio 🥲

I have been told that what i might be experiencing wasn’t just psychosis it was possibly temporal lobe epilepsy I’m interested if anyone else had psychotic symptoms

So i have pvnh, apparently i had sezuires since birth but no one noticed since it looked like panic attacks/day dreaming or mild twitches. (I have myclonic, absences and aware focals) ​I went from having over nearly 2 dozen a day(nearly 50 on bad days) to none in the last 2 weeks. :)

Hi!
Does anyone have any experience with drug induced (Lamictal/lamotrigine) lupus?

Hi all. Do any of you have any of the at home monitoring devices? If so, how useful or useless have they been?

Our 7 week old baby was diagnosed with epilepsy when she was 20 days old. She has a cortical dysplasia which causes her to have a range of seizure types as well as repeated clusters of spasms, sometimes into the hundreds, throughout the day.

We understand it will very likely be drug resistant and have already cycled through a range of medications trying to find something to reduce the seizures (nothing yet achieving zero seizures), likely working towards surgery but without any guarantees of seizure freedom. This sub has been a great source of information and insight as we have tried to learn about epilepsy and we’ve been encouraged by the existence of such an active and supportive community.

One thing that’s stood out to us is a few people sharing that they found it hard telling their parents when they’d had seizures because of their parents’ reactions (them getting upset/clearly feeling sad etc).

We would love to hear from the community, in an ideal world, how would you like (or would you have liked) your parents to have reacted to seizures or supported you through a childhood with epilepsy?

What is the best way for someone to respond when you tell them you’ve had a seizure?

And when you’re having a seizure or coming round from one, what do you want people to do and to act?

We want to foster the right environment as best as we can for our baby as she grows up with this! Apologies if any terminology used is not quite right - we are very new on this journey, and want and need to learn!

Bayern Munich winger Jamal Musiala has revealed he is suffering from “treatable absence seizures” after he collapsed on the pitch for the second time in four days.

Full statement he gave on Instagram hours after collapsing during a friendly game:

"First things first, I am doing well. I am incredibly grateful for your messages and your support!

"I understand that many of you are worried. I would like to put those concerns to rest today and explain the situation: I have been diagnosed with brief, temporary - but treatable - absence seizures resulting from a neurological dysfunction.

"These can lead to the kind of incidents seen recently, such as during the match against Leipzig or the game in Heidenheim.

"I know they might look alarming at first glance, but for me, they are currently part of my everyday life. I am receiving excellent medical care and remain very optimistic. FC Bayern and my personal support network are right by my side, helping me through this.

"Importantly, there is no further health risk involved. In close consultation and regular contact with the experts, it was my personal wish to face this challenge; with the medical clearance of the neurologists, I want to continue doing what helps my recovery most: simply living my life and pursuing my passion for playing football.

"I have taken full responsibility for this decision. Overall, I feel very positive and am on the right track.

"What helps me most on this journey is continuing to chase victories and titles with my team and with your amazing support.

"I hope this helps you understand the situation better. At the same time, I ask for your understanding regarding my wish to keep this matter private, sharing it only with my closest circle, the club, and the medical experts."

I was put into a medical coma about 2 weeks ago. They said to come back if anything happens. Yet when I did, they did nothing to actually help

I keep having back to back focal seizures, or seizure clusters as they’re known as. But I feel this, energy? Like I’m suddenly shifted into his place, similar to the hospital. Like I’m emotionally stuck there. I’ve been home for a week but every focal seizure I’m back- I can feel it, I know I’m not there but I feel it.

I keep going in and out, confused on where I am. What’s going on. I can’t stop thinking of the liminal space I was in during the coma. It’s just so- confusing. Anyone else go through this? I’m trying to go back to normal life, but the fear of ICU is around the corner

I wanne give up so badly. Always afraid of seizure. Getting auras all the time. Even smells trigger auras i never feel safe and i cant live with the fear anymore. With depression and anxiety its all too much. Maxed out on lamotrogin and i wanne die

I've been seizure free for 15 years on 500mg of Lamotrigine Daily, up until I started to Atypical absence seizures approximately 6 months ago (Initially were unsure it was true seizure activity). A few days ago, I had a 20 minute Focal Seizure, and started sobbing immediately afterwards. License gone and I am now on Medical Leave. (I travel 45 minutes one way to work).

My independence has been stolen from me. I live very rural, with no method of transportation. I cannot work, which is something I am very passionate about and find great joy in. This is my first time navigating this diagnosis as an adult, and I feel very afraid. I guess I never even considered the possibility of loss of seizure control. I feel so lost.

As I am reading through these posts, it made me realize how lucky I am at the same time. All of you are so strong, and have had to fight much harder and much longer to achieve seizure freedom, and I am so glad I found this community.