I have general seizures and have for a long time. But for some reason, I only have them in my sleep. I have simple partial ones when I’m awake but that’s it. My neurologist said that some people have seizures only in their sleep and that I probably have the partial ones in my sleep and just don’t know it.

So here’s my question. Who else has something similar? I want to know other experiences. Are you able to function the next day? If so, how?

Hello everyone,

My teacher had an epileptic incidence last time in class and I felt really really sorry for her. I can't imagine how scary that mist be for a person, especially when surrounded by so many people. I thought about getting her some flowers, but I don't know if it's appropriate. I just thought she deserved some joy after what has happened. So my question, what would those of you who are affected think about this? Is it crossing any boundaries, possibly making her feel embarrassed/uncomfortable?

Thanks in advance for your insight!

It really seems like they can't/won't do anything unless you're in TC status... By the time that happens you can't call for help by yourself anyway... Thoughts on seeking help?

Man 29

In Northern Ireland

Epilepsy for 5 years

Tonic Clonic free

Just focal

I am tonic clonic free, but i am full of meds. Still taking focal seizures. Had 2 MRI's, PET scan, EEG but can find the problem.

Im being referred for surgical scans in England. Will be traveling for these and staying for 1 week or 2 weeks for these scans. Really don't like the aspect of travelling for these.

Just asking for someone who was in my position, compared to my previous scans, how successful were surgical compared to number i have previously done? How many different ones you had to do? etc

I understand everyone is different, but just wondering what your experience was?

My son (47M) woke from sleep with a full grand mal seizure but his brother and I heard him and ran in to do the rescue protocol. It occurred to me that anyone who is living with family or others may be able to alert people if they have an aura that it’s coming on.

Since my son was 10 we trained him to pound the wall or his bedside table as hard as he can. This has made a huge difference in being able to get to him quickly. Tonight he pounded very fast about 8-10 times and then his brother and I made it to his room and got it stopped in less than 15 seconds.

My son has status so every seizure is serious and needs rescue protocol. He’s had a VNS for the last 19 years so we are all so happy the magnet that comes with it works 9 of 10 times. All we have to do is pass it across his device (it’s like a small pacemaker). We have Nayzillum nasal spray if the magnet didn’t stop the seizure.

This would only be workable for someone who has a lot of seizures, say 10 or more a year, and for the full seizures where you will become unable to talk or yell, if you lose any ability to move independently as it takes hold of you. You’d have to likely have someone who will help you develop what works, like my son pounding. And it would likely take quite a while to get this instant reaction the second you realize the seizure is on the way.

I’ve been thinking about the person who posted last week about trying to get Siri on his cellphone to alert his brother. He said Siri failed and he was alone in full seizure without help. I wonder if people who get seizures out of sleep or maybe in the shower could develop a super fast alert to get help? Maybe only for those who get an aura.

We have used a room monitor for over 35 years now and can hear it if he starts to seize if he pounds or tries to yell out. Sometimes we hear only one word and that’s all, but it works.

Maybe anyone who also has gotten a method to help can share what they do. No matter how many seizures over so many years, each one sure gets everyone going. It’s really an odd “normal” to suddenly jump into instant action, but after a while it does tend to go like clockwork: over and done in less than a minute.

I think lots of people here rarely discuss how being diagnosed or living with epilepsy while living in an African country is like.

Well, it's terrible.

The first time I had a seizure was in high school, people thought I was possessed and started running away from me - it was a grand mal seizure and no one knew what it was, not even the teachers.

I went undiagnosed for years, got another seizure in uni and my friend who witnessed it ghosted me after it. Still not diagnosed.

I finally got diagnosed when I had my first seizure in front of family and took me to a hjghly specialized neuro who didnt come cheap.

But now, I cant even work a normal job because people here dont even understand seizures and think its possession, cant have a normal life, cant even get into a relationship because who eants to be in a relationship with the epileptic girl, wouldn't want to have kids because I fear they may inherit my mental conditions (I have ADHD as well.)

Even neuros here are far and few in between and pretty pricey- so tired of this Im literally considering going back to school to study nursing and specialize in neuro and maybe try to cure myself and help others sharing my plight who cant afford specialised care.

I hate it here and wish I was born in a good country like the US. If you live in a good coutry where people understand neurological conditions, please be grateful, really grateful.

End of rant.

This week for me is literally is terrible for me hopefully yall had a good week tho 💜 purple heart 4 epilepsy awesomeness November coming up soon wear yall purple clothes epilepsy awesomeness month

It never gets much easier, no matter what anybody tells you. You might get better if you’re lucky like me, but you mostly just get used to it. I was trying to exercise this evening (to feel better and be healthy) and I was having auras. I ignored them then got a strong one, but it didn’t progress, luckily. It’s just like being a dog on a shock collar, literally. My auras are shocks, and I’ve been having auras and anxiety all day. They boomerang off each other. I’m doing great tbh, no TC seizures since December 2025, knock on wood. But the auras get me, they really do. I’m mostly able to ignore them at work because I have to, but I feel sad when they invade my personal time like tonight. Auras make me feel like nowhere is safe; I want to run, but I can’t. Reality feels foreign and dangerous. Claustrophobia and asphyxiation in my own body; the walls are closing in on me. Let me go, run away, nowhere to go. My brain is the threat.

Anyway, I quit for now and grabbed an ice pack because it helps with the anxiety and I’m sitting on the floor with my dog. I feel a little better now. Sometimes I just cry thinking about how I’ll live with this for the rest of my life. I’ll grow old with this. It’s hard. Looking ahead, I’d like an ESA dog for OCD and anxiety in the next 5-10 years (I don’t pass out, I have time to get to the floor for all types of seizures), but I never plan on driving because I have too many auras and too much anxiety to safely do so imo, so that could be tough. Also, I’m sure it’s an extremely expensive cost, and I’m not rich. Anybody have a professional dog? 😂 I don’t know much about how to get approved for/afford one.

We’ll see. One day at a time. Enjoy my existential ramble. I’d like to acknowledge that I’m lucky in comparison to most people, but it’s still hard some days.

We can do this, guys. It might suck, but we can do it.

I've had epilepsy since I can remember, I was diagnosed with Mesial Temporal Sclerosis at age six. Let's fast forward..

At the age of 24 I had a craniotomy, as well as a temporal lobectomy where a little bit less than ⅔ of the left side of my hippocampus was removed. Yes the epilepsy got better (from impaired awareness seizures to onset awareness seizures - but it gets worse every now and then, and due to the surgery I sleep a lot more now), but unfortunately I still get seizures.

And for some unknown reason they just seem to be increasing in quantity each month. Last month it was 256, or a daily average of 8.53/ day for all those who love numbers out there.

In a way it just annoys me is if I say that I had a few less than the day before and then some people get happy or excited and then and few days after that then I get a cluster is seizures. So I just keep these kind of things to myself. I mean like I've lived with this shit for basically my whole life! Just wait longer than 24 or 48 hours!

What just makes this whole this worse is the medication messing with the whole emotions thing! Whatever! Nevermind!

I just wanted to share that!

Thank you, and goodnight.

A nurse said i should wear a helmet but that feels embarrassing and extreme. I will if it's normal in the epilepsy community, but I've met a LOT of epileptics & none of them wear helmets.

Most of my seizures, actually almost all of them, happen like this: I suddenly feel a strange sensation, almost like I'm briefly drifting off or getting a chill through my body. I'm fully aware of everything around me, I have complete control over my movements, and I remember everything afterward. They only last about 1–2 seconds, and I can immediately go back to whatever I was doing as if nothing happened.

Is there a specific name for these kinds of episodes? Can they even be considered seizures?

I know I can’t double dose, my kiddo but I’m so worried if she throws up after taking her medicine that she has to take twice a day i’ve read multiple places if she misses a dose it’ll increase her chance of having a seizure. And that’s kind of what I’m worried about.

I’ve been asking her doctors so many questions. I’ve been doing research like a madman. But I didn’t even think about this until she threw up And now my mind is going crazy. I feel very unprepared She’s had two seizures so far and we finally got her diagnosed and since taking her medicine has not had another seizure

I’ve looked up how to use her rescue medicine what to do when she has a seizure everything and I don’t know exactly what’s causing her throwing up but what am I supposed to do if she throws up her medicine and has a seizure?

This might be a weird question. I’m very new to all of this and I understand if this group is not for moms with kids who have epilepsy or questions like this but I can’t really call her doctor at 7 o’clock at night.

Hi, lately I (24F) have started to feel a bit off about my epilepsy journey and just wanted to share in case someone has some insight/advice or can relate. I had a brain tumor diagnosed when I was 16, a coroid plexus papilloma in my temporal lobe. I had a craniotomy in august 2018 and had my first seizure later that year. I have horrible medical trauma having gone though that in silence and alone, and its been hard for me to come to terms with the fact that the fight was not over then. I have temporal lobe epilepsy and i tend to get auras, or focal seizures before a grand mal, sometimes Ill get the aura and thatll be it. I had my first seizure in my sleep some weeks ago too, after a week of sleep deprivation and stress. I have been on different seizures meds, right now im in the middle of adjusting doses but i currently take a bit of vimpat, bivriact, lamictal and aptiom. The plan is to taper off the vimpat to help with some of the side effects like blurry vision and dizziness. I have tried keppra and xcopri in the past but didnt like the depression; i didnt feel like myself.

I feel like I have come to a point where I keep being hopeful, hopeful that this new med or this new dose will finally work, and I might be approaching a point where I have to make a bigger decision, if that makes sense. My doctor has been great and I am very grateful for him. In our past appointments hes mentioned by the end of them “you know, there are other options” i guess hinting at the fact that i am not controlled right now, or that he has given up on me.

It is hard for me not to shut down the idea of going under again and having say, an RNS implanted or a resection because I know what it feels like to wake up from something like that and I dont know if I could take it, I already have the scar in my scalp.

I apologize for the overly emotional text, i just feel like im weirdly both mourning the person i couldve been if i were healthy, but i can also feel myself shutting down the panic of “what am I going to do if nothing works”

Thank you so much if you have read so far, and pls dont drill me online lol, english is not my first language and it feels very vulnerable to post this

Hello everyone,

I am currently taking 250mg Lamotrogine twice a day, 1.5g Levetiracetam twice a day, and 200mg Cenobamate in the evening. The meds seem to control my partial seizures for the most part, but I do seem more likely/have more partial seizures when I'm tired, especially the day after I may have done a few 12/13 hr shifts in work in a row. I haven't had a tonic-clonic seizure for years. I have read that tiredness reduces the threshold for seizures, so I was wondering whether there is any point in contacting my specialist with regards to increasing my medication, or whether seizures when tired is just sonething that's going to happen, regardless how the amount of meds I'm taking. Living in the UK, I don't have regular checkups with the specialist. It's been a few years. It's seems to be a case of just getting in contact when you need to discuss something. Thank you for any help 🙂

I’m a 39M and got diagnosed with temporal lobe epilepsy a month ago.

I have not driven since I had my first tonic clonic seizure last month. I had been having focal aware temporal lobe seizures one every year or two probably for 15 years and just thought I was crazy. I was driving this will time. I think I have nocturnal seizures as well (routinely bite my tongue, wake up gasping/racing heart and have a 72 hr EEG next week).

Not driving has been tough, I feel like a teenager again, trying to bum rides places or wait to be picked up. I’m definitely NOT chomping at the bit to get behind the wheel again. I have 5 kids and the thought of being behind the wheel with them in the car terrifies the s**t out of me.

How long was it before you felt comfortable driving again (assuming you were cleared to)? Have you placed any restrictions on when or who you’ll drive?

I'm a 26F, and I have had epilepsy ever since I was a kid, but my family doesn't seem to understand the struggle fully.

I'm very much aware of the fact that my family have been going through so much because of my epilepsy, either financially or mentally. My mom doesn't seem to get used to it no matter how many times I have a seizure, she always panics. I know that I have been a burden even when they never voiced it out, but it's just not getting any better.

It's been two years since I last had a grand mal. Usually I lose consciousness and my muscles tense up to the point that I need at least two grown up male adults to lift me up, and I don't even weight that much. I had a seizure outside for the first time in my life two years ago and my mom was greatly shocked, so we changed my doctor and he got me on Levetiracetam ever since.

Since the meds seem to work, I tried my best not to complain about the side effects. As long as I'm not having a grand mal, I was fine with it. But honestly it's just too much, I started having a temper, I keep fighting with my family members, depression is eating me up and I'm almost giving up my post grad studies. My concertation and memory is getting worse each day and it's affecting my progress with my thesis greatly. No matter how many hours I sleep, it doesn't seem like I had enough. On top of that I started having absence seizures during my sleep that I haven't mentioned to anyone.

Early this morning, my muscles started tensing up and my body was shaking, it seemed like a tonic clonic seizure, but I was fully aware. I went to the hospital and the doctor there said I said i had to see my neurologist to get me on a higher dose of Levetiracetam because apparently my grand mals were overshadowing my absence seizures that's why we never noticed them before.

My mom was crying this morning and told me how tired she was. She believes it's all in my head and once I decide to get better, it would just work somehow. She is bother by my sleeping and depression and cannot understand that it's related to my epilepsy and meds, and honestly maybe she is right, I don't know anymore.

I'm really tired myself, I was never bothered by my epilepsy but it's been hard on the past two years, I don't feel like living anymore to be honest, I just want to disappear somewhere not to burden anyone. I don't want to tell my doctor about today's incident nor the absence seizures. I feel like a higher dosage will literally make me lose it. What should I do in this situation? I'm really lost.

I'm curious whether you require workplace accommodations as a result of your epilepsy? If so, would you mind kindly sharing yours? I am in a sedentary role and I work from home and considering a request myself.

"BE PRODUCTIVE, DAMNIT!!! COOK SOMETHING! CLEAN YOUR APARTMENT! OR AT LEAST GO OUTSIDE AND ENJOY THE OUTDOORS!!!!!! 😡😡😡😡😡😡😡"

"And also... You have epilepsy. You are sensitive to bright light. It's ok to rest if it's bright outside. Take it easy if you need to. 🩵"

I was raised by a family that valued work over everything so having a disability was just hard. My mom called me lazy when I'd lay down and rest.

I still struggle so much with drill-sergeant-ing myself to the point where I'm exhausted. I haven't pushed myself into a seizure in a long time (it used to be like that, when I was still around my family).

I want to find exercise that is gentle. I don't know how to be gentle with myself. This is hard.

Hey guys! I was on keppra for about a year but recently did a full transition over to Lamotrigine.

So a few months after I started keppra I started having super bad brain fog and anxiety which caused me to be unable to focus or sit still which looked exactly like ADHD to me and to my physician, so naturally… he put me on 30mg of Vyvanse. At first it did help with a few of the symptoms I had but shortly after, I found that it stopped working. Boom he gives me 40mg. Guess what, that also didn’t really help. I don’t think I have ADHD, I think I mistakenly thought the side effects from Keppra was ADHD.

Now I take it pretty much daily, not because it helps, but because I’m dependent on it. I believe it’s been making me foggier and more exhausted than I would’ve been if I hadn’t started it. I’m going to talk to my dr/pharmacist to see if they’re able to wean me off of it so I can see if that’s the case.

I’m curious if anyone else had a similar experience as Keppra side effects look a lot like ADHD.

(Btw my physician isn’t the one who prescribed me Keppra, it was my neurologist but my neurologist said he doesn’t deal with ADHD?)

Hi everyone,

I have temporal lobe epilepsy. I was originally taking Keppra, but my neurologist later added lamotrigine. Since then, my seizures have been under control, but I frequently experience brief auras or strange feelings that are different from the auras I used to have.

Has anyone experienced something similar?

I’m wondering whether anyone has experienced brief auras or strange sensations while taking this medication.

Does anyone else have issues with picking up your meds? I go to cvs 2 times a month to pick up my meds but it turns into going 4 times and 8 phone calls because when the day comes to get it they don’t have it or tell me I can’t get it, they have been filling my 90 day subscription with 30 days because they don’t have enough but then putting it in their system that I got the full 90 days so 3 months pass for me but in there system it’s been a year then I need to talk to my nurologist and get more fills EVERYTIME! I am about to switch pharmacy’s so wish me luck

Also if anyone in cali or us had recommendations for which pharmacy to switch to please let me know

Update: switched to Walmart pharmacy and if it doesn’t end up well will switch to ma and pop thank you to those who commented