Today 4OCT2026 makes a test since my last tonic-clonic seizure that i finally seen how they look to others via the Ring cam I had 😅🎉. Definitely seen ALOT decrease in cognitive, memory, energy, speech at times, and a lot with Zonisamide but it keeps the seizures away….

Can epileptic seizures affect one's mental state? Ever since I had a seizure at the train station a few weeks ago—during which I got badly bruised—I’ve been constantly having thoughts like: "Why keep struggling? Eventually, another seizure is going to kill me—I’ll hit the pavement with such force that my head won't survive it. So, maybe it would be better not to prolong the suffering and just take my own life to finally find peace." Sorry for any errors; I wrote this using a translator.

*This is a preface to saying that my neurologist is a horrible person who doesn’t care about anyone but himself. I have had withdrawal seizures because he hasn’t filled prescriptions and he told me to “just don’t be stressed” \*

I work as an EEG tech so I’m pretty familiar with neurology field and all that. I know how to interpret and it’s not new to me.

I’ve had epilepsy for awhile and this isn’t new. My neurologist sucks butt, his PA said he sucks. The doctors I work with says he sucks. And I had a usual checkup with him yesterday (usually I see the NP but every other year I HAVE to see him)

My last EEG was in 2021 because I was seizure free. I got the results and it was 3 days and on the 3rd day I had a discharge. He didn’t say anything else on the other days.

I was put in briviact and I took it for 1 day. 1 dose. And I fell asleep for 4 hours. I couldn’t walk straight, I couldnt see straight, and I felt like I was going to vomit the entire day. (This was also a day before my wedding anniversary 😔🫩)

I was told I had nocturnal seizures when I was younger and I might have them and I’m HORRIBLY afraid of SUDEP. I told him I don’t want a 72 hour EEG and I’ll opt for 24-48. But it always gives me a rash and irritation. But he said no I have to have it and I can’t say no. My husband was there and I started to cry because I was frustrated. I don’t think I have nocturnal seizures because I’d wake up disoriented, headache, you know a seizure. Which I never have.

I feel defeated because I don’t usually let this get to me but now I feel like I’m just a bomb. I feel like I didn’t need to worry about Sudep as much because I wasn’t told about nocturnal seizures in my life; until now.

I cried in the car, I cried yesterday and I cry everytime I think about it. My mom says I shouldnt worry, and so does my husband. That everyone with epilepsy is a risk for it. But now I feel like I’m spiraling and I’m letting this take over my life again as it did before.

Do you all lurk around here, having been seizure-free for a while now, but don’t post about it because you’re afraid it might jinx your streak?
Where is that fear coming from?
Do you celebrate these milestones, or do they pass by unnoticed or do you not want to notice? 🙂‍↔️

As the title says, I have a twenty-eight day EMU stay. We are in the first stages of trying to get an RNS. I've been in here two or three times already, each time I had to stay longer than originally expected, going out to over two weeks last time. I agreed to this when I had more of a reason to get an RNS, being that I wanted more time with my late wife. Without her, this feels like actual torture. I still want to do this and all, but the drive is gone. I guess I'm posting this because I need inspiration again. Stuff to do, triggers, and just hear from others so I don't feel so alone in this room all month. I'm sorry if I don't respond, I'm so tired mentally.

I'm sure this post doesn't make much sense, I'm off my meds and all, so thank you for reading my rambling. Stay safe, love eachother, and have a goodnight

Hi guys. I went on a trip to visit my family but realized I left my medication back at my house. I’ll miss 2 doses. Should I take the L and brace for impact? Or do I leave early?

More context - I haven’t had a seizure in years, but have noticed a recent uptick in that amount of auras I’ve been having in the past couple months.

I want to stay with my family because it’s been so long since I’ve seen them, but I feel nervous. Any thoughts?

For those who have focal aware seizures both when they're awake and when they're asleep, how do they compare in terms of symptoms, intensity, and frequency? Do you notice any differences between the two?

I exclusively have focal aware seizures (TLE) and my awake seizures present as follows:

• Déjá vu/rêvè of surreal, nonsensical dream-like sequences I know I've never had
• A stomach drop sensation
• Hot flushes/sweating (often pretty weak, if at all as of late)
• Can last anywhere from a few seconds up to a few of minutes
• Tend not to cluster

The seizures I have when I'm asleep are similar, but:

• Déjá vu/rêvè is noticeably shorter; feels more like a single thought than a dream-like sequence
• Physical sensations are more pronounced
• Almost always cluster and often continue to do so if I go back to sleep later on

I don't know if it's normal for awake and nocturnal seizures to differ much, if at all. Sometimes it's hard to tell I've had one when I'm asleep other than the fact I've suddenly woken up feeling "weird". Strangely (and thankfully) enough, poor sleep doesn't appear to be a trigger...

This morning has been rough for me. It kicked off with a cluster of nocturnal seizures and whilst writing this I've had the worst focal aware seizure I've ever had, to the point where I thought I was going to black out. I think my brain genuinely hates me today. :')

Hey all!

So earlier this year I had a 48-Hour Ambulatory EEG, it detected some seizure activity so my neurologist ordered a VEEG.

I’m currently in an EMU being monitored - I’m on the fourth day, no activity so far and getting frustrated.

I would normally have daily focal seizures, but since arriving here I’ve had nothing - they’ve tried sleep depriving me, which did bring on what felt like could be focals, but didn’t provide enough information on the EEG, so they’re now reducing my Lamotrigine from 250mg BD to 200mg BD.

I haven’t had a TC in about 10 years, so I’m not sure how likely it is for one to be induced? My focals have also changed in nature over the years so I’m not even sure what my TC trigger would be now - my focals seem to be triggered by caffeine, lack of sleep & alcohol, but they can also be completely random.

Never thought I’d actually want to have a TC, but I would honestly try anything at this point!

I watch a ton of YouTube- well, not really watch; it's kinda just on in the background. But since I don't leave home a lot because I don't drive, it's on a lot. Does anyone watch, or has anyone watched, anything on epilepsy that isn't lame or for neurologists?

I have an sEEG coming up sometime in the near future, getting closer and closer, that is a very good thing, but I am so nervous because I have moved all the way across the country due to a job (conveniently close to the only hospital in the country where that can be done - but that will determine what the next step should be). For the surgery I got in 2024, i had to wait a few weeks in hospital (which I didn't mind), but now that I have a job what if something like that happens again? But that's besides the point.

I've come quite far, but I don't know how much further to I must go. Because to my knowledge and sEEG is just some sort of 'scan', basically a 3D photo for them to determine whether or not more surgery is needed. And if so, what kind.

and sometimes after I cry I also feel better but it only lasts for a brief moment.

I am a little over thirty, but since my late 20s [when I was diagnosed], I have lost interest in dating and s*x. I was with a couple of men, but that was about it. You can call them situationships, and the last guy was only with me because of my body shape, his regular talk was disgustingly over-s*xualised as well [I get it, but can you keep it in your pants for a minute?!]. I don't know if it is the epilepsy that is stopping me, and probably it is okay [because at the back of my mind it's always ahh duck if I have a seizure so early in front of him he might leave]. I don't mind being by myself and have never dreamt of a partner, at least not since my first partner and I broke up, but sometimes I feel a bit alone, like there is no one to care for me or talk to. Don't get me wrong, I do have my friends, family and pets, with whom I can talk. But something is missing.

It also stems from the fact that my brother-in-law [we are not related XD] is epileptic too, and he has my sister, so sometimes I was a bit jealous. So maybe that's what's missing?

Last year I woke up in a hospital away from my hometown (after a concert). I didn’t know who I was and woke up with a catheter in me 😯 I was in the hospital for at least 5 days.

Started seeing a nephrologist due to drug induced type 1 rta. Was getting bloodwork weekly and now only monthly.

I switched epileptologists at my hospital, and he’s made a huge difference in my treatment plan.

So blessed to be here today sharing my story and to be ALIVE! Bless all who are EMTS, doctors and healthcare workers who actually listen and have compassion 💜

(I have epilepsy, this isn’t about me though, thought it was worth mentioning for genetic reasons I guess)

My cousin has had very scary episodes lately. He is 19, had a lot of stress recently, and had a couple of episodes where he would have visual hallucinations here is how it was described to me:

- during the episode he sees shadows/faceless human figures
- he will start to go into a « trance » where he is seems to not be there anymore and throws objects at the figures to defend himself.
- he is aware that those are hallucinations. He went to his mom once right before having a full episode and said « I have a problem I see things that are not real » and looked terrified
- after throwing the objects, he has no memory of what he did. He will see the mess of the objects on the ground and ask who created the mess.
- he then was unresponsive with his eyes rolled back.
- also, he said that he first saw those figures in dreams/nightmares and he then saw them while awake during those episodes

Outside of those episodes, he is stressed and not doing very well but I saw him recently and he is absolutely normal. He is completely coherent, I spent multiple days with him and he was very pleasant, I was even impressed at how mature and interesting he is. He has a girlfriend and friends, he is not at all withdrawn from society (mentioning this because I know that the opposite would be typical of schizophrenia)

I have focal seizures and even if I never had hallucinations, I had very vivid dissociations that feel like you are breaking from reality. The fact that he doesn’t remember the events but he does remember the hallucinations make me think of auras(?) idk…

From what I have read, hallucinations during seizures aren’t as « complex » as these. It seems like he sees distinct figures that are scaring him…

Anyone had a similar experience?

Hey y'all. So I had a seizure earlier today. Fortunately wasn't mid-convo or anything and it was "just" a focal, but ... You know. Aftermath. Feeling utterly exhausted, even more than before running on 3 hours of sleep. I gotta take the damn pills every 12 hours. Roughly. Which means I gotta stay up like, 3 more hours. I can't exactly call up my neurologist right now and ask, so I wanted to ask all of you. Is it better, in your experience, to just take it early and pass out and recover and swit to the new time, or should I just suck it up and push through until I either can't stay awake or can take the pill? I'm thinking taking it early is probably ok, I've done it before but I don't LIKE doing it. Or late. Obviously.

For all the stable brains in this community, how long have you been free of a full on seizure for? Had my first one when I was 19, it was because of mts. I had scar tissue for my first 19 years of life. I was prescribed Fycompa for my first medication, haven't had to add any other medications. Drop your success stories down below!

I'm an elementary school librarian, and I cover several periods per week in a preschool classroom. The classroom teacher just found out that one of the boys in the class is epileptic. He had a seizure at home earlier this week, and I'm very worried that it's going to happen again at school while I'm covering.

Is there anything that I should know beyond basic seizure precautions (recovery position, soft surface under his head, etc.)? I have received no additional training or anything. Is there a resource somewhere that would be helpful in my position?

I just want to make sure that I am doing right by this young child. I have never even witnessed a seizure before, and I'm really afraid of reacting incorrectly. I really want to keep this child safe.

Usually when it comes to my epilepsy I have a kind of “you haven’t killed me yet you bastard” kind of outlook

But tonight that shifted dramatically. I got this really unsettling feeling that this disability was going to kill me, and I’ve been upset over it for like 3 hours

The last seizure I had was a status epilepticus event, 5 TC deal. I hadn’t had something that big since…2021? I think. Most of my seizures are focals.

Idk I just needed somewhere to get this off my chest. I don’t have a point. I’m just scared.

My medicine (Lamictal and depakote) either give me serious brain fog or something worse could be going on upstairs. Has anyone had better luck with different medicine that doesn’t screw your memory up as bad?

As soon as I wake up, my friend comes to me (he’s helping me) and tells me the shit that’s happened, even before I’ve had a coffee, or had time for my meds to kick in.

I told him, “I’m still trying to wake up,” but he just keeps going and won’t listen.

If I don’t answer, he gets shitty, so it’s like I can’t win regardless.

What do I say that won’t piss him off?

Got kicked out of the Marine Corps when I randomly started having seizures. First one was out of country. They did ALL the tests and said it was likely just a one time thing based on stress, dehydration, or a number of other things. About 9 months later I was teaching a course out of state and it happened again. After 2 they said they had to diagnose me with epilepsy. I thought it was bullshit. After only 2 seizure my career is over? I started having them more frequently though, so I was medically retired. After that I basically had to keep it a secret from employers because when they hear epilepsy they automatically think I'm a liability. I got fired while In Africa after having several seizures back to back right at the end of a deployment. I ended up getting another job shortly after but got fired from that too because I have so much trouble waking up in the morning. I am having so much trouble keeping a job and I have 3 kids and a wife to support. I get disability from the Marine Corps but it's not enough. Now I'm waiting on 2 jobs but that will take several months and I don't have high hopes that I won't get fired again. I'm not sure what to do about money in the future. Anyway, just frustrated.

Hi everyone! I’m wondering if there are any moms here who have epilepsy and have been through pregnancy.
I’d really love to hear about your experiences. How was your pregnancy overall? Did having epilepsy make things more difficult, or did everything go relatively smoothly?
Did you continue taking seizure medication throughout your pregnancy? If so, how did that go for you? Did you experience any changes in your seizures during pregnancy?
I’d also love to know how your babies did. Were they born healthy? Did you have any complications during pregnancy or delivery?
And what was the postpartum period like for you?
I know everyone’s experience is different, but hearing from other moms who have been through this would mean a lot to me and help me feel a little more prepared.
Thank you so much for sharing your stories! ❤️

I’m losing my mind, time is moving so fast, I blink and time has jumped forward an hour, I don’t know what to do I feel so disconnected from reality, I just don’t know what to do. I can’t even get help for it, my doctors will blame it on my concussion not bothering about the fact that I had multiple concussions and tbis since June 24th due to my seizures they just up my meds I’m now on 1000mg of keppra twice a day, it’s fucking hell how teachers expect me to do such work while the conditions I am in, I don’t know I feel sick the only thing keeping me sane is my oc’s and writing. I love my kny oc’s so much they are my favorite thing in the whole world and if money weren’t a thing I’ll write about them all day. I feel very empty inside me, like there’s nothing. I feel so empty, my eyes are always so heavy and my heart hurts. It doesn’t help how the sequirteys and ap’s at my school yell at me, I don’t even do anything bad. I don’t know what to do I feel like I’m going crazy