r/seizures

I was diagnosed with seizures at 36/37. My brain was chilling on my skull, which started the seizures. I recently had brain surgery at Mayo to help correct it. So I haven’t had much of a social life. Recently, I started feeling better enough that I feel like I could go out.

Yesterday I went with a friend just to a Mexican restaurant. The food was so good. But on the way out, I had a seizure. I had one in the restaurant. No one seen it because I was sitting there by myself. I was totally OK with that. As we were walking out, I started crying the right side of my body got tense. And my friend got super nervous and was pretty scared like they were worried about what was gonna happen and I’ve had conversations with her about. Hey it’s OK it’ll go by you. Just gotta chill. It’s OK.

Still today I’m so embarrassed. Usually I can feel and see the seizures coming on I didn’t yesterday. Which sucks, but I feel like I traumatized my friend.

Hey so I was at work today I’m 15 years old and I have been smoking fur about 2 years I know it’s bad but I don’t know how to get off it with weed I feel sad without weed I feel sad so I went to woke and I forgot to eat breakfast like a lot of people do and it was my lunch but I forgot that but then I smoked some weed and I was outside today it is pretty hot on my 30 min break then I came back to the cold and I blacked out and passed out I thought it was like just I couldn’t see but then my coworker told me I had a seizure like looking passing out which had me scared bc I don’t even remember and know what happened. Had this happened to anyone what to do or how to stop weed?

i had a seizure for the first time last night. i don’t remember the hour before it (me having a shower and getting ready for bed).

i was in the bathroom and my mum thought she heard me vomiting so she came to check and i started having a seizure and i bit my tongue.

when i came round i try to walk to my bed (against my mums advice) and i bumped into some things on the way as i was still quite out of it.

the first thing i remember is seeing the paramedics stood next to my bed. they took me to a&e where i got given some pain meds and anti nausea meds. i spent the night in a&e and got a head ct and bloods taken, which both showed nothing abnormal and then was discharged.

i was wondering if anyone had suggestions for possible causes or anything i should do? i’ve been referred to the first fit clinic.

also i live in the uk and have a provisional drivers liscense, but i just use it for id when going out. do i need to let the dvla know about any of this?

So I'm very confused about this. I had a very short seizure one day and my roommate called the paramedics it didn't last too long and then in the hospital they said I had another seizure. I am on a very low dose of the generic brand of Keppra I only take 250 mg one today my doctor prescribed me more twice a day but when I was taking it it made me act very irrational. So I've only been taking it for 4 months. Oh my dilemma is that I'm also on Suboxone and have been for two and a half years 8 mg a day. And I'm also on gabapentin which I take a high dose of that daily. So I want to go to a detox center to get off of the Suboxone and I don't want to tell them I'm on seizure medicine because I don't know if they would accept me because I've never been in that situation. And I also take less than what is prescribed so that's also a reason I do not want to tell them and I would rather just go and detox from the Suboxone. But I also read a lot of people talking about how this medication causes suicidal thoughts and I'm not going to hold you I have literally been having the most depression I've ever felt and I have not seen a neurologist yet I have my first visit on August 18th. My question is would it be safe to go to detox and stop taking the seizure meds while in there and honestly I want to stop taking them until I see the neurologist to see if I need them. Cuz I would rather not mess up my brain chemistry if I don't have to. Cuz some of those symptoms and the things that people were going through and the depression that I've already experienced I'm not for. And I truly would appreciate any advice that is given please please help me with this decision. And also do you have seizures right away when you stop the medication or is it later on down the line or is it just different from person to person? I am very confused and sad and I've never felt any of this before and honestly I'm just scared. I would appreciate any and all advice. Thank you for your time! 🙂

I got it bad!

Back in January, I had a seizure in my sleep at around 12AM. Luckily I was at my Dads and my sister was with me. She heard me not breathing well and when she turned on the light, she said my lips were blue (lack of oxygen). She started CPR on me and called 911. They rushed me to the hospital and from what I was told, I was clinically dead in the ambulance for about 5-10 seconds when they got to the hospital. The paramedics were doing what they could to bring me back and they succeeded.

So, the hospital I was at, they put me on Keppra and I've been taking 2 a day ever since. This was the first seizure I've ever had in my life. I had just turned 60 the month before.

The rage part... I am very irritable now. Anything will set me off and I'm afraid it's ruining my marriage! It's scaring me!!! I know I need to talk to my wife about it and I probably will. Right now my daughter is visiting with my granddaughter and I love them both sooooo much and I love having them here. I still get irritated easily about things and I know my daughter sees me being irritated easily. I probably need to talk to her as well so she understands why I am acting the way I am.

It's like I don't give two shits about anything anymore (with the exception of my daughter and granddaughter). My wife is also on some heavy medications for pain and whatnot and I think that may be having some symptoms of irritability on her as well. I don't know all the medications she's on but a lot of it is pain killers. All prescribed of course.

I've been able to deal with her irritability in the past but now, with the medicine I'm on, it's impossible to do that and that's not even the half of it. I've become less caring of myself. Meaning, if something happens to me, I wouldn't care if I didn't live through it. I know, right? Hard to read someone saying that.

Now, I'm not suicidal or anything like that. I have plenty ways to take my own life but I have no inclination of doing so. But if something were to happen to me suddenly like a car crash or another seizure or something like that, I wouldn't mind if that ended everything. I'm not afraid of dying but I'd never purposely take my own life.

I know, hard stuff to read and I would be shocked reading something like this as well but I really have no fear of death but I'm never going to force it upon myself. But I'm ready if it ever happens.

That's got to be the medicine... right?

I don't want them to put me on something else. I heard that switching meds sometimes has negative implications and I really don't want something bad to happen to me as a result of that. On the same token, if they did change my meds and I had a negative reaction to it, I kinda hope it would just end my misery quickly and painlessly. How I died in the ambulance is kind of how I want to go. I went to sleep and almost never woke up. I never felt the seizure occurring, didn't have any idea my sister was giving me CPR, didn't know the paramedics pulled me off the bed, put me on a gurney and rolled me into an ambulance. All I remember is waking up and seeing the back of an ambulance as I was being pulled out of the ambulance. But if I didn't wake up, I'd have been perfectly fine with that. Zero pain or discomfort at all! I kinda feel like I had that taken away from me a little bit. No one wants to go out with a lot of pain.

I know... Go see a psychotherapist... Well, I wasn't working when this happened and I have no medical insurance. I was turned down by both Medicaid AND Social Security so I have no way to pay Dr Bills right now.

I can start driving again on the 23rd of this month so I can go back to work then. But for now, I really can't do anything.

I'm writing this just to vent. Hopefully it will help me talk to my wife and daughter. I hate feeling this way and I don't want them looking at me as some old geezer miserable a-hole. This is definitely medicine related because I never ever felt this way before in my entire life.

And no one told me of the side effects and what medicines I can take and what I can't take with this stuff. I used to take an allergy medicine and it helped me every day during the spring. I can not take it now because the way it reacts to Keppra. So I've been miserable with allergies all spring and even up to today. I'm hoping this dissipates quickly now that summer is here. Allergies and heat... Not fun!

There's a lot of stuff I can't take now that I used to. I can't take Hydrocodone anymore because it has a serious reaction to Keppra and any other seizure medicine from what I hear. I have a bad back and now a sore shoulder and all I can take is Extra Strength Tylenol... What a joke!

If anyone has some similar experiences and has figured out a trick to get around the irritability thing with Keppra, please let me know your secrets.

Advice on how to prevent yourself from getting over,

I recently keep having seizures and honestly makes my brain feel like it a potato in a microwave. My head always hurts and I never have any energy. I use every bit of my energy today trying to shower. It's been the whole month of June like the whole month. I'm on unpayed leave for work cause I can barely function. I can't even do what I like to do like draw or game. So ended up ether spending my month in and out of hospitals or in my dark room laying in bed and with TV on so low you can barely hear it. Does anyone know why I'm still struggling so much or atleast have some recommendations or anything I'd really appreciate it.

Has anyone had a seizure after using zyrtec and famotidine together?

I’ve been seizure free for two years using zongram, but I had a seizure at the end of barre class and this is the only thing I can think of for causing my seizure.

It feels incredible to have reached nearly six months seizure-free — a milestone I’d worked so hard for and started to see as a new normal — only to have a seizure suddenly happen and feel like I’m back at the very beginning. All that progress didn’t vanish in that moment, but it still hurts deeply to feel like I have to start over, rebuild that confidence, and find my footing again. Even so, I know every day still counts, and I’m determined to keep going, one step at a time.

Welp, I had left this group because I thought it was just giving me unnecessary anxiety. Nope, had seizure number 2 last night, this time in the shower, so I guess now I just have epilepsy. I’m just in a place where I absolutely don’t want to accept this, I don’t want to take meds and I just wish I was able bodied really. I have so much resentment already and it’s just getting worse the more this shit happens.

Hi doctors,

I'm the parent of an 18-month-old and would really appreciate an evidence-based opinion.

At 13 months, my child had febrile status epilepticus. There were two seizure episodes during the same febrile illness, each lasting about 20 minutes. The second occurred after reaching the hospital. Child required intubation and PICU admission.

The EEG was normal, and the treating team felt MRI wasn't indicated. Since then, there have been no further seizures.

Levetiracetam (Levipil) was started at 2 mL twice daily for 3 months, then reduced to 1 mL twice daily, which is the current dose.

My confusion is this: we clearly remember being told at discharge that the medication would be continued for 6 months and then reviewed. At the recent follow-up, the pediatrician said there was no documentation of that plan and now recommends continuing levetiracetam for 2 seizure-free years, based on their clinical judgment.

Around a month after starting the medication, we began noticing behavioral changes. I know I'm a worried parent and some of these may simply be normal toddler behavior, so I'm not claiming the medication is definitely responsible.

However, compared with before the seizure and treatment, we've noticed persistent mild-to-moderate irritability, frequent crying, aggression/tantrums, hyperactivity, poor sleep with frequent night waking, clinginess, reduced attention, slower speech progress, less interest in social interaction and play, occasional head banging, reduced appetite, and some clumsiness.

We live in an area with very limited access to pediatric neurology and developmental/behavioral specialists, so getting another expert opinion isn't easy.

My questions are:

1. Is 2 seizure-free years of levetiracetam after febrile status epilepticus (normal EEG, no further seizures) a common or evidence-based approach?

2. Is there any guideline or literature supporting this duration, or is it mainly individualized?

3. How commonly do you see behavioral side effects from levetiracetam in toddlers, and do they typically improve after tapering if the medication is no longer needed?

I'm not asking whether I should stop the medication on my own. I'm simply trying to understand whether this management is in line with current pediatric neurology practice.

Thank you!

Engineer_parent

I'm going into college soon with no car, no bike, nothing besides me and my feet and it's going to be hard day one asking people "hey can I get a ride to practice" (because i'll also be a student athlete). I don't want to spend 40$ a day on Uber because that's to damn much so I want some input.

I’ve been wanting to share my experience to see if anyone else has gone through something similar.
When I was only a day or two old in 2006, doctors thought I was having seizures, but they eventually called them “tics.”
Fast forward to sometime in late 2021, I started having intense feelings of familiarity (déjà vu). It would feel like I had already lived through a moment before, even though I couldn’t remember when or how.
Then, sometime between January and May of 2022, I had my first shaking episode. I was sitting on the floor in my room, completely awake and aware. I put my phone down, and suddenly my left arm started shaking on its own for about 30 seconds to a minute. I never lost consciousness, and I remember thinking, “Why is this happening?” It stopped on its own. I had a few more episodes after that, but I don’t remember the exact dates.
On April 26, 2022, while walking outside, I suddenly smelled something like metal or blood, but nothing happened afterward.
Then on December 8, 2022, I had another episode while I was in class. My head turned to the right, and I started shaking. I remember thinking, “This feels familiar,” because it reminded me of what had happened earlier that year, even though I couldn’t fully put my finger on it. My teacher stopped teaching and came over to check on me because she thought I was having a seizure. At that time, I honestly thought seizures only meant someone lost consciousness. I didn’t realize there were different types.
On January 24, 2023, I developed a severe headache on the right side of my head, and I also had another seizure that same day. After that, my episodes became much more frequent.
On August 16, 2024, I had such a severe headache that I was life-flighted to the hospital. Thankfully, I recovered, but it was one of the scariest experiences I’ve had.
Over the years, my symptoms have included:
Recurrent déjà vu.
Right-sided headaches.
Flashing lights in my left eye.
Left arm shaking while remaining aware.
A strange metallic or blood-like smell, usually through my left nostril.
A rising sensation that travels through my body.
Speech difficulties during some episodes.
More recently, I’ve also started having strange episodes while waking from afternoon naps. I’ll wake up in an in-between state where I can hear—and sometimes see—what’s going on around me, but I get an overwhelming feeling that something bad is about to happen or that something is approaching me. Sometimes my left arm will slowly reach outward, and my left eye will scan around the room on its own. The feeling usually lasts anywhere from a few seconds to about a minute before I fall right back asleep. When I wake up later, I barely remember it.
I’ve had multiple EEGs, an MRI, and even a three-day EEG where I experienced shaking episodes, but nothing abnormal was captured. At one point, I was told these episodes were psychogenic or “all in my head,” but they have continued for years.
One thing I found interesting is that I took Depakote (valproic acid) 500 mg daily from November 12, 2025, through December 11, 2025. While I was taking it, my episodes stopped. About five days after I ran out of the medication, around December 16, 2025, the episodes started happening again. I don’t know what that means, but I thought it was worth mentioning.
I also have high blood pressure, although I’m not sure if it’s related.
I’m scheduled to see an adult neurologist on July 8, and I’m hoping to finally get some answers.
Has anyone else experienced warning signs like déjà vu, strange smells, rising sensations, or episodes where they stayed aware during the event? Were your symptoms ever dismissed as psychogenic or non-epileptic before you eventually got a different explanation? I’d really appreciate hearing your experiences while I wait for my appointment.

Hi..57yo F married with no kids. I had a tbi in 1981 and wound up with seizure disorder. So bad that im 1988 had right temporal lobectomy. Seizures just about gone. In 2022 I started having episodes of altered mental status. Id "check out" any where from 2-12 days. Come out of them in our local hospital. MRI and CT scan show only post operative changes and have had numerous EEGs results have shown some "cortical irritability" and general encephalopathy. EEG shows new activity in the right frontal lobe but my previous brain surgery is in the right temporal lobe. I am now unable to drive or work because i never know when ill be in a comatose like state a LP showed increased protein and some CSF inflammation. I am so depressed over the whole thing. Any ideas would be very appreciated

Hi so I’m a F(18) and I haven’t been diagnosed with seizures yet. When I was younger I had passing out spells. Then when I got into my teenage years I had like black out spells and now it’s turned into more seizure symptoms. From what people have told me..and I’ve caught it a few times on camera. I stare blankly. Other times I spit up and I shake and hold my breath. From research I’ve done it sounds like a mixture between Absent seizures and tonic-clonic seizures. They would happen for like a while and then would suddenly stop and I’d be okay for maybe months or years. Has anyone else experienced this? People don’t believe me because they randomly stop and I haven’t had the time to go to the neurologist yet..I just wanna know I’m not alone. I feel so alone and scared. Believing everyone will just think I’m a fraud. I need help. Please.

Hey everyone, I’m reaching out for advice and insight. I’m a 31-year-old, otherwise healthy male with no prior health issues or family history of seizures. Last week, I had my first seizure out of nowhere, during a low-key gym workout, just a day after getting Botox and fillers. The week before, I had been drinking heavily, but I had stopped for about 3 days. I also took a Mexican Ritalin that day because I misplaced my Vyvanse. I’m working at an extremely stressful and miserable job and struggle to get quality sleep (sometimes 2-3 hours a night). Leading up to the seizure I had probably only slept 6-10 hours over 3 days.

After the seizure, I went to the ER and was prescribed Levetiracetam 500mg 2x a day, but I’m only taking them just at night for. since the seizure, I’ve been constantly dizzy, almost like vertigo? My doctor did clear me to work out and run like before, but I can barely complete half a workout or a slow jog without feeling off-balance, dizzy, and panicked I might have another seizure. The other day, even just walking to run errands, I had to sit down because I was so anxious. I typically run 5-6 miles 4x a week and lift 5-6x a week.

What I’m really struggling with is this constant fear and dizziness, and I’ve even started withdrawing socially because of it. It’s been difficult to understand what is a true warning sign and what is anxiety/a trauma response from the episode.

I have an MRI and EEG scheduled in 3 weeks.

What do people suggest I do to get my life back on track and resume a normal routine? I’d really appreciate any advice on how to stay balanced and get back to normal life. I’m very much struggling and feel so alone. Thanks so much.

about 3 weeks ago i had an episode on a flight home from cabo. i suddenly got really hot, took my jacket off, put my head down, and then lost consciousness. my girlfriend said my head was nodding while i was unconscious (not full-body convulsing). i threw up, lost bladder control, and when i woke up she was cleaning me up.

a couple hours before, i had taken what was supposed to be a 15 mg THC edible. my girlfriend also had some and agreed they seemed much stronger than advertised. she normally takes about half an edible with no problem, but she took less than that and said it felt like she’d eaten a whole one.

i was also pretty dehydrated. we were at an all-inclusive, and i was probably only drinking around 2 bottles of water a day while drinking liquor the rest of the time.

urgent care thought it may have been a seizure and sent me to the ER. my CT scan was normal, all of my blood work came back normal, and they couldn’t confirm a seizure or identify another cause. i haven’t had an EEG yet, but i have a neurology appointment coming up soon.

i’ve felt completely normal ever since with no other episodes. i’ve also had a cocktail since then with no issues. i haven’t used THC since the incident because i wasn’t sure if that could’ve been the cause.

has anyone had something similar happen? if your workup was inconclusive, did your neurologist tell you to avoid THC until after your EEG, or were you eventually told it was okay to use cannabis again? i’m wondering whether smoking a joint now would be a bad idea or if i’m just being overly cautious.

Hi everyone!

So, I have a sleep related epilepsy. My seizures strictly happen right in that transition phase when I'm falling asleep (drifting off from being awake to sleeping).

I know that medical literature usually says sodium channel blockers are the "gold standard" for sleep related epilepsy, and honestly, my brain agrees. I achieved 100% seizure freedom with with Lamotrigine in the past, and currently, I am also 100% seizure-free on Lacosamide (Vimpat).

But here's the catch: both of them gave me absolutely unfixable insomnia. I'm talking about the kind of insomnia that doesn't respond to anything, no sleep meds, no perfect sleep hygiene, nothing works. It's really taking a toll on my quality of life.

Because of this, I'm seriously considering talking to my neuro about switching to the SV2A class of meds, either Levetiracetam (Keppra) or Brivaracetam (Briviact). My reasoning is that even if they do cause some sleep issues, insomnia from Keppra/Briviact seems way more "fixable" and actually responds to sleep aids and good sleep hygiene, unlike the hardwired insomnia from sodium blockers.

But here is my dilemma and my biggest fear: I've been trying to find success stories, and it feels hard to find people with exclusively nocturnal/sleep related seizures who are 100% completely controlled just by Keppra or Briviact alone. I'm scared that my 100% seizure freedom is only happening because I'm on the "perfect mechanism" (sodium blockers), and not just because my brain responds well to meds in general.

Just a quick note: I'm really looking for cases of true monotherapy (only Keppra or only Briviact). I know a lot of people take benzos for sleep, but since benzos are also anticonvulsant drugs, it makes it hard to know if the Keppra/Briviact is actually doing 100% of the work.

So I'd love to know: is there anyone here who only has nocturnal seizures and is 100% seizure-free taking ONLY Keppra or Briviact (without any other AEDs or benzos)? Can this class of meds completely shut down sleep seizures on its own?

Any experiences or advice would be hugely appreciated! Thank you!