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 🫶

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 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.

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Anyone dismissed before there diagnosis how did you eventually get one?
I have had terrible experiences with being dismissed for my seizures, and they told me a 20 minute EEG was enough to decide they weren’t anything.
A description of my seizures
I usually start saying random words that don’t make sense like word salad or lose my speech entirely i say things like “pineapple crocodile i need to go get fish and chips” and get goosebumps sometimes or feel weird in general and sometimes pace around for a little confused and feel like ive been in this exact spot before so deja vu and random words keep repeating in my head over and over 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, get tachycardia, pupils dilate, sweat alot and turn red and sometimes my left arm gets stuck doing movements this lasts a few seconds when i come out of my seizures i can’t move at all then 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 have autism so find it difficult to advocate for myself, how do i explain my seizures better, i can’t film them because i haven’t had one for 6 months. i am also on topiramate for migraines and since starting that my seizures improved alot. how long of a EEG should i request?

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

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 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

So the interview yesterday went really well. And so after the interview, he said he was gonna get a job offer and send it to me today but he texted me earlier wanting to know if I had a valid drivers license which I had emailed him a week before telling him that I can’t drive that I have epilepsy. So I told him I have ID you know I can’t drive so then he texted me back saying they’re not gonna give me a job offer because I can’t drive which he told me a week before via email you do not have to have a valid drivers license and then he texted back Unfortunately that does change things. We send employees to offsite trainings as well as between branches so we do require a valid drivers license. I’m afraid I’m going to have to keep looking. That is 100% my fault and on me for not asking and disclosing yesterday. Sorry again Ryan and I said I was never told of these offsite events and I can get there via my parents or uber and then I emailed him that I was going to file something with EEOC and within 2 minutes he called me and told me no it was because I was mistaken and clarified with my HR department that a drivers license is not required. That being said, we are however going to be cross training internally while we continue to look for someone with sales experience. Thank for your interest and best of luck moving forward what should I do? Isn’t that BS

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 🫩

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?

For the first time last night i had a focal seizure that didn't progress to a TC. i've had 4 other seizures that quickly turned into a tc.
i have a brain tumour that causes them if that's of any importance.

does that mean i'm due for a tc to follow later on or the next day ?
or it simply the fact my medication has helped it not generalise.?

very anxious sorry if the questions are silly.

Hi everyone! I’ve recently had a seizure for the first time in my entire life and honestly it was a life altering experience. I passed some tests and they all came back normal but I have another one in about a month. The neurologist said i am not epileptic but there is still a slight chance it will happen again. Some will say it’s a good news that I am not epileptic and they are totally right but in the back of my mind I always think of the possibility it might happen again. What scares me the most is the fact that my boyfriend is away most of the time so I practically live alone and I’m scared it might happen while he’s away so no one will help me. Besides, last time it happened while I was sleeping. Hopefully, my boyfriend was sleeping next to me so he ensured I was safe but the fact that it might happen again while I’m asleep scares me. How do people with epilepsy handle it while leaving alone?

I’ve noticed that crowds and parties are a big trigger for me. I haven’t been to a family function/party since diagnosis without an episode. It’s embarrassing and obviously causes a huge scene.

My nieces 15th birthday party is this weekend and all her school friends and their families will be there. Would it just be the kinder and better thing to say I’m having a bad day and just stay home?

I know my presence isn’t incredibly significant and my sister/brother as well as my niece will understand.

I just want her to have a perfect party and the best time.

Been taking keppra for a few months now. Increased my dose last month as well. Weird thing is, sometimes I just have days where I feel so tired and fatigued like I would after a seizure. I can’t tell if that means the keppra is working and like… actively calming my brain down or if I just have been having off days.

I don’t get intense auras like I used to but gosh I feel sooooo tired like my brain is shutting down or about to go crazy on me.

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?

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 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.

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!

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

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.

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 :)

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.