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
Hey! So my 9 year old son who is also level 2 autistic have been dealing with seizures since he was 5 years old (maybe younger but I saw it when he was 5 for the first time). After he probably had one every year if that. We had the choice of medication or waiting to see if it would go away. Since at the time he was still not talking we wanted him to be able to let us know if the medication affected him and in what way.
Fast forward to now he is 9 and his seizures have come back starting Aug of 2025 having one literally every month. His Neurologist have done every test MRI came back normal, CT scan normal, and his EEG was normal awake but showed spikes in the second relm of sleep. Tomorrow of Aug 2026 we talk medication and I’m terrified.
I think it’s because I’m in so many support groups and people on medication still seem to get no relief or have MORE seizures than before. Or the seizures get worse 🫤 it’s like a lose lose situation. Anyone have positive feedback or did anyone actually benefit from medication? I just don’t want him to be worse than he is now & regret it. But it’s like ultimately, I may not have a choice. 😔
I just wish medication was more of a clear solution.
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?
heyyyy everyone. 😅🤪i’m a 28 year old woman, and i was recently diagnosed with epilepsy after 2 long years of seizure episodes and blackouts. it’s a long story why it took so long to get a diagnosis, but that’s besides the point. i’m writing because since finding out, i have been very sad. unwell:( physically, mentally, emotionally.
i’m soooo paranoid now that every little thing is going to cause me to have a seizure. especially because i don’t experience any auras or vibes before the seizure happens. i have not been able
to identify any triggers or anything; besides being hungover when i have an episode, or having one in my sleep.
i’ve had 2 EEGs, one a short one, one a week long one. the shorter one didn’t result in anything. lights or heavy breathing did not trigger a seizure. it didn’t for the week-long one anyone either.
again, this has made me SOOOO uncomfortable and paranoid everytime i feel something weird or bad or anxiety inducing. i left the hospital on Friday, august 14th. and i feel like my life has changed for the worse. since the hospital visit, due to those seizures i had while checked in the hospital, my memory has gotten worse. not only that, but i struggle to find my words as well, and i have been soooo exhausted.
i just wonder if anyone else lacks auras! or can and have been smoking marijuana with no problem. i’ve smoked often, but after the diagnosis i’m scared it’s a trigger. i’m not sure what to do. do you guys think i should cut down on/stop smoking?
is it normal to not be affected by lights and heavy breathing during EEGs? despite being epileptic?
any advice, words of wisdom and/or affirmation would be greatly appreciated. :))))
Hello, I need a neurologist, please, to read my EEG.
Hey there! Title says it all ☺️. Was okayed by my neurologist, she just said go somewhere reputable (😂) I have focal seizures and so far after brain surgery I usually only have them after extreme unexpected stress - I would be expecting this so I don’t necessarily think this counts? Was wondering if anyone had gotten tattoos after being diagnosed?
I know in theory I could take rescue meds prior - but a big tattoo no no is they will absolutely not tattoo you under the influence. This of course could be considered different if I spoke to the artist about it maybe? (which I would of course) but I had always been interested in getting one even before being diagnosed 13 years ago, now after 3 brain surgeries I am the most stable I have been.
Thanks everyone 🫶
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
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’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.
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!
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 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.
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?
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."
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. :)
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.
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 have had a concussion from a seizure back since June of 24, I just came back to school this Monday and I realize I wetted on myself at school. I was thought I had gotten my period but I was wearing grey pants and didn’t notice any thing. Then the odor, it wasn’t strong but I realize I had wet myself. It reminded me of when I first wet myself 2 days after my first sezuire I’ve been 53 days free till today.
Is it because the stress I put on myself during school? My handwriting has also been getting worst so has my writing. If you look at my spelling the worlds are all gunbled up and messy.
Should I be concerned
it’s difficult to describe my seizures because they are so bizarre to me and i am semi conscious but there is a brief second i feel like i lose complete consciousness but i usually start saying random words that don’t make sense and get goosebumps sometimes or feel weird in general and sometimes pace around for a little before the actual seizure and i get a feeling like my head is very heavy beforehand then i get a weird burnt rubber smell, i stare and drool and get tachycardia and sweat alot and turn red when i come out of my seizures i am agressive and have assaulted nurses due to being very confused and afterwards all of that i am left with a horrible migraine i know what’s happening is very real but i get dismissed because Ive been diagnosed with psychosis and its frustrating that one short test has made them decide its not epilepsy. Does anyone have seizures similar to this? What type of seizures could this be? Also i sometimes get a distortion of music and sounds before it happens
The altered state of consciousness caused by a seizure was viewed as a divine gift of prophecy or second sight. Because the seizure temporarily severed the individual from ordinary reality, ancient folk beliefs in some regions suggested the sufferer's soul was journeying to the spirit realm or communicating directly with gods. Seizures were viewed as as a form of divine dialogue reveals a rich historical tapestry where the altered state was treated as an interface between the mortal and the transcendent.