r/Epilepsy

Hey everyone,
I’m (26M) struggling to accept a new epilepsy diagnosis and need some advice. I’ve had two unprovoked seizures now,

First one: 21 days back, Happened at home while presenting my screen on a work call. Colleagues said I stammered, went silent, and they had to ring me up as they were afraid i had a stroke or medical emergency something.. I woke up with severe back muscle pain that lasted 4 days and ended up with rhabdomyolysis (my CPK was 21k which later became normal)

Second one: Happened 3 days ago. I drank some coffee and was heading back home to host a work meeting demo in 30 minutes. About 5 minutes before the seizure, I had a brief spell where I suddenly couldn't understand what my friend was saying, and I even told them about it. Right after, I started my motorcycle, rode maybe 10 meters down a bylane, and blacked out.
Bystanders said I had stopped the motorcycle but was struggling to balance it and was about to the drop the motorcycle to the side (it aas standstill though the last thing i remember was starting and riding it- this happened at a place just 1 metre or 2 seconds after that memory)
They managed to catch the bike, but I hit the ground, went completely stiff, and was foaming at the mouth. When I came to senses,I realized I had peed my pants and there was sand on my jeans and t shirt meaning i was on the ground.

The motorbike 🏍️ is parked and i am afraid to ride it anymore .. though i like cycling and did go out for cycling ride yesterday and today an planning to go tomorrow… 🚴🏻

My neurologist prescribed levetiracetam(keppra) (500mg, twice a day) 💊for 6 months, but it’s been 3 days and I haven’t taken the first pill.
Because I feel completely normal in my day-to-day lifestyle between these two events, a part of me is in massive denial. I want to wait to see if it happens a third time before committing to daily meds, but I'm also terrified of the Keppra side effects.

Has anyone else hesitated like this when they felt "normal"?
What are the actual risks if I keep delaying? Thanks.

If i dont take the meds, will it mean i will have lower threshold to next seizure and my brain will be trained to more seizures? Please help me…

I am having difficulty accepting this.

I'd like to start off by saying that I haven't been diagnosed with anything and I haven't even been able to get in to seeing a neurologist yet. I had my first tonic clonic seizure on September 22nd when I was at work. Ever since then I've felt like my surroundings aren't real. I also feel like I'm not in control of my body. It's very hard for me to put it into words.

When I tried going back to work I kept forgetting simple tasks I normally would have no problem with. I feel like since nothing feels real right now my dreams get even worse. I'm having more sleep paralysis and that causes me to not want to sleep anymore. I'm seeing more things out of the corner of my eyes. I keep forgetting random things and I'm feeling crazy. I know on the surface level just looking at me I seem fine, but I feel like I'm going insane. I just want things to go back to normal. I want to feel here again. Has anyone else felt this? And when will I feel normal again? It's really scary not knowing what's going on with your body. It constantly feels like I'm dying.

I'm sorry in advance if any of this is offensive. I'm just trying to make sense of all of this.

I got diagnosed with epilepsy when I was 13 and a family member who was visiting shared a room with me and found me having a grand mal seizure on the floor. I’ve had extensive imaging over the years and long-term EEG studies. I have a meningioma and the EEG studies have never picked up an episode despite anything done to provoke a seizure.

My Epileptologist brought up that he thinks that I could be having non-epileptic seizures. I have had the grand mal between 2am and 6am in the morning with one exception that happened during daylight. I struggle with nightmares and I was wondering if it could be related to the seizures but at the same time I’m feeling heavily discouraged about being told my seizures are non-epileptic. I can’t drive, I struggle with episodes of feeling out of body, and I’m currently being tested for MS.

At one of my recent EEGs a doctor asked if anyone had actually witnessed the grand mal episodes (duh, they have) and I was so angry because it feels like I’m constantly getting nowhere with this and it’s ruined my life.

Has anyone dealt with this? I’m 25 years old and feeling frustrated. I don’t drink or smoke, I take care of myself too and these grand mal episodes rarely happen but the out of body experiences are the worst.

Like not knowing when you might have a seizure…. How can you relax and enjoy life?

I am new to this whole thing and find myself constantly on edge….

Anyone else a pro at getting themselves injured during seizures? I am lol, I don’t have auras or known triggers at the moment (besides hyperventilation which sorta kinda? Idk that’s just what I think on said on my eeg)

My first seizure I gave myself a concussion. My second I felt really dizzy which wasn’t out of the ordinary since at the time I just started taking keppra so my mom told me to go lay down, woke up with giant bruise on my forehead. Third and forth I was laying down again sleeping and then bit all over my mouth causing me to choke on my blood…. Also I have bruises all over my legs and arms from previous seizures.

Anyone have these seizures lead to the feeling of doom never lifting? I have suffered for 30 years of this and was improperly diagnosed with panic attacks. I’m surprised I’m alive. I self medicated because docs and therapist never thought about sending me to a neurologist. Please tell me someone
Else has lived this hell of nobody believing you and resorting to treating yourself.

The anxiety attack is just out of level by having the whole sequence of having a seizure. I take Keppra 500mg/2x a day, and it's not bugging me that much. But thinking about the scenario, having the 2nd part feels much better.

Hi! I went off medication after being 3 years seizure free and have been off medication for 2 months. There is a chance that I’ve outgrown it which is great!! I have been thinking a lot about that it might have been my meds that has been working good for three years, and that I might not have outgrown it. So whenever I feel lightheaded I’m worried that I will have another seizure. I just don’t know when I’ll be sure whether I’ve outgrown it or not. (Sorry for the english)

Any other ladies here that have extreme symptom flare ups during or just right before their period im genuinely so pissed off i get auras like every other day and it knocks me on my ass for at least 6 days straight n im so keppra’d up 💔

Posting for the first time here. Recently, I suddenly had a weird feeling that I often get right before a full on seizure. Difficult to explain but it sort of acts as a warning sign and if I immediately lie down and try to keep my brain calm, I am generally able to avoid the seizure completely. This generally happens when I've had lack of sleep for a few days or missing my medication.

However, as mentioned earlier, I suddenly had that weird feeling again despite having enough sleep. I had been sweating profusely due to my body overheating and this continued even after taking a shower. Could this have been the reason? I've never had this happen before though.

My boyfriend (m23) and me (f18) have been dating for a year. And he’s the best thing to ever happen in my life. I’ve been through some dark shit . I raised myself. And I’ve never felt safe with anyone until I met him. He’s kind and funny . And always knows how to make me smile. But he has epilepsy. It’s not a problem for me . I’d gladly drop everything to make sure he’s safe . But he feels like he’s a burden to everyone around him . And I hate that he feels that way . I hate that I can’t make him feel better because I don’t know how . He’s been talking about ending it . Saying he doesn’t know how much longer he can make it . And I’m scared I want to help him I just don’t know how and I can’t lose him . So please if anyone has advice please let me know

Anyone have extreme trouble concentrating? I’m in a very grey area because it seems like I’m lazy but at the same time I’m pretty sure my meds mess up with my focus? I honestly don’t remember how good I was before I started my meds so I don’t have anything to compare it with.

The cons are that I don’t get enough work done at work now it’s a Sunday and I need to put in at least a few hours to catch up on things.

My wife really wants to get back in the work force, but doesn’t feel comfortable driving. She is having auras, mouth clicking on a weekly basis and hasn’t gone more than 6-8 months without a convulsive seizure. Does anyone have any tips. We are based in Oklahoma.

Thank you so much in advance.

I feel like there's so little acknowledgment of focal aware seizures/auras outside of the epilepsy community... So I wanna connect and see who else struggles with them. They're my main type of seizure, and when I mention to people that I'm epileptic they don't seem to believe me when I tell them that I don't have the "typical" TC seizures that people normally think of :/ So! I wanna support. And I wanna know what YOUR focal aware seizures are to help educate others in the future!

I'll start. My focal awares/auras include: short derealization episodes, staring spells, mild leg/arm jerking/twitching, eye fluttering, unexplained spikes in anxiety (sometimes with the inability to speak; like i can move my mouth but i can't form words).

I really hope this post can help educate more people and allow us to advocate even more for this condition 💜

Ive done this before but when I was taking the same medication at both times. Now im on totally different medication. Just any help to make it through the day without having to fo to bed would be really helpful.

Im dizzy, tripping, slurring (which i do sometimes but more today). My wife.and i have 2 kids and I just need advice please. Also my anti depression medication is usually in the mornings I haven't taken that.

I also have ptsd and cptsd so.my brain, although sloggy is going a mile a minute with what could go wrong.

Thanks in advance (also focusing on these letters was really hard)

I've been genuinely, wondering how different ways a body tells you that a seizure is about to happen.

For me, I get the unique smell in my nose. A smell that I only bring in connection with my seizures.

So what other ways does a body tell you and could give you the time to inform others or keep yourself safe.

I wanted to know if anyone else has dealt with police being dicks after you have had a seizure. Last week I had left work to head back home and I was maybe 2 minutes away when I had my seizure. I dissociated fast which didn’t leave me much room to grab and take my emergency meds and/or pull over. I didn’t go INSIDE the home but I for sure hit the front of their house and almost went in. Thankfully I was not physically hurt. I woke up maybe within 5 mins after the crash so I’m talking nothing but gibberish and still completely out of it. Maybe 15 cops showed up and there was one in particular that was really rude to me and my mother. He was certain that I was drunk driving. Wasn’t listening to anything my mom was saying to him. Kept telling him I’m dissociating and have no clue what is happening. She asked if I had been seen by EMS and he goes “should he be?” My mom yelled so loud “YES HE JUST HAD A SEIZURE”. Towards the end my mom was getting so fed up she made them breathalyze me. I blew and he awkwardly goes “0.0” and walked away all embarrassed. I am so frustrated with how all of those people dealt with this situation. It should be a priority for police to learn about mental health. What it can look like and how to go about it.

I was hooked up in a padded bed and monitored 24/7 without meds and intentionally stressed to induce a seizure so they'd have proper information to treat

It worked! I had a seizure. The Neurologist said it was a Gran Mal Seizure and lasted only a few minutes, yet I wasn't coherent for almost 45 minutes

She said they now know where in occured in my brain and now know which meds will better work in that area of the brain.

We're now planning extensive cognitive testing and more to determine exactly what THAT part of my brain actually controls. If it's determined to not be vital or important, then surgical removal of that grape sized part of my brain will be removed....

Has anyone experienced this? Success? Failure? Cautions I should look into?

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I’m (21w) trying to understand what happened with my boyfriend’s seizure and whether staying awake after taking his morning medication could have made a difference.

He (22m)has sleep-related epilepsy, so his seizures have always happened during sleep shortly before he wakes up in the morning (Around 6-7am) He takes 500mg Levetiracetam twice a day, at 7am and 7pm.

He started taking keppra mid March of 2026 and was seizure free for about 6 Months.

And about 5 weeks ago he had a cluster of 3 tonic-clonic seizures in one day. All of the seizures where really bad.. with stiffening, jerking and tongue biting. After the third one he got his rescue medication. He doesn’t remember any of the seizures.

After that he was seizure-free again for around 5 weeks.

Yesterday he woke up around 7am, taking his morning dose. I remember because i always wake up because of the alarm. Anyways, we both where really tired and since we didn't need to work, we decided to go back to sleep for another few hours.

Then at exactly 8:57 I woke up because I thought he was talking to me. I got up, looked at him, and realized that nothing sensible was coming out of his mouth. He talked as if he'd invented a new language... that lasted for about 5-10 seconds, and then he quieted down, slowly touched his chest, and I knew immediately what was going to happen next. I got up, got dressed, and when I came back, he let out a loud scream and had a grand mal seizure. The seizure ended at exactly 9 am.

Afterwards he was extremely confused. For example, he had one sock on his foot and was holding the other one in his hand, but when I asked him what he was looking for, he said “the other sock” even though he was literally holding it. He was also extremely exhausted afterwards and slept for a long time.

So now I’m wondering about the timing.

If he had stayed awake after taking his 7am medication instead of going back to sleep, could that possibly have prevented the seizure, because he only has the seizures while he's asleep or would it have made no difference and he would have had the seizure while awake?

I'm just trying to understand what's happening and how I can support him better, as I know how stressful the whole thing is.

I am grateful for any help!!

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So my fiancee has epilepsy, autonomic dysfunction, and pots. Her doctor recently requested that she be put on the medical keto diet because recently she's been having more frequent auras and a seizure or two while she sleeps at night over the span of like 6 months. Problem is on this diet she's severely struggling to intake everything she needs in order to not lose weight which she can't lose weight with her other medical issues... A little background for her is 4.5 years ago she had a 16 hour long seizure in which she lost the previous year of memory but since then has made massive improvements up to the point of being able to get her license back.

I'm asking if anyone else on the medical keto diet has any advice about how strict it has to be with carbs or if there are any alternatives outside of the keto diet and If you can still have success and improvement with epilepsy while still in taking small amounts of carbs?