r/seizures

I have a PNES diagnosis, but my neurologist and I have only ever captured focal aware seizures on a video EEG. Based on that, I was given the PNES diagnosis. I agree that my drop seizures and other similar focal aware seizures are non-epileptic in nature and triggered by nervous system overload. (I'm autistic as well so that happens a lot even without trauma stuff.)

However, 1-2 times a year, I will have severe nocturnal clonic-tonic seizures, often involving falling out of bed and hurting my head. 1 week ago I had another one of these and I actually tore my rotator cuff on my left shoulder. There is no rhyme or reason I can tell behind them other than they occur every 5-8 months fairly regularly. I noticed no difference on or off Keppra.

My neurologist and I have done 2 5-day sleep studies trying to catch a clonic-tonic in order to either rule out epilepsy or, if the clonic-tonic ones are epileptic, then to characterize them on EEG. As I said these only captured nonepileptic focal aware seizures, and no loss of consciousness occurred. Insurance only covers 1 5-day test a year.

So now I'm just left uncertain if I need epilepsy treatment or more intensive psychotherapy in order to stop myself from suffering injuries 1-2 times a year in my sleep.

I plan on setting up a security camera to record 24/7 to try and get video data, but sadly my neuro said he didn't have the tech to let me record EEG data every night until I have a seizure.

Would love to hear your thoughts.

No one in my life understands but I really just need to vent/put this out.

I (23F) started off with Juvenille Myoclonic Epilepsy when I was 16. I had minature muscle spasms that I ignored until I was 19 because I thought I was overreacting and doctors are expensive. I was unemployed at the time and my sleep schedule was sleep all day be up all night. On Thanksgiving 2021, I had a muscle spasm infront of my parents because my mom broke my schedule because she wanted dinner together, where they proceeded to yell at me and ask what was wrong with me. For 4 years I only had Muscle spasms where I would lose temporary function of my arms, legs or have kinda like the chills. It effected me a lot but I didnt have anyone to talk about. My first Neuro didnt believe me. I had my first Grand Mal alone in my room. I was playing minecraft with some friends online and woke up confused on my floor with missed calls from my friends. They told me they heard me groaning and grunting and my tongue was messed up. When I told my Neuro he told me I probably just passed out. I relaxed and fixed my schedule, I was good for a while minus a small falling down the stairs incident from my spasms. After a while I moved back home with my sister instead of my parents.

I was good for the first year. October, and November of 2024 I had 2 Grand Mals at home where my sister found me confused and daised staring at the wall unsure of where I was. At the end of my Job at the time I had a Grand Mal at work that ended up with my going to the hospital where they said, Youre awake now, nothing we can do. Go home. This one really freaked out my sister as it has been 3 months consistently. Unfortunately with my state, after a reported seizure you're not permitted to drive within 6 months of a seizure.

I had about 3 total last year along with several mini-spouts of my muscle spasms. Now the reason I need to vent and post. About 2 weeks ago, I haven't really told anyone for fear of being fired etc., I was alone in the store of my current job, I was training a new hire and it had been a really stressful day. I felt sick but didnt really pay it any attention. I remembered getting my new hire to final steps of our closing process and then next thing I know, I'm sitting in the work chair with dried blood on my nose and mouth. I messed up my tongue pretty bad and I was genuinely so confused. (I was very lucky that during my post-recovery phase I didnt walk out because we were closed to customers and our doors were locked). I had realized after I sent my New-Hire home, I had a seizure at some point during the process. The next day I found out from my GM that my new hire had reached out to him and asked him if I was okay. I didnt know until then that my New Hire had seen my seizure. Apparently I kept slipping after she mopped the floors about twice, I had urinated on myself during the process, I kept repeating my words and staring off. I was genuinely so embarrassed. I couldn't face that new hire for a week. Mind you this is the same employer that I had had seizures hours before my shift in 2025 without calling off. I was terrified.

I know my health is important of course but being without a job for those 10 months, (6 without being able to drive and another 4 to get accepted to a reliable job) Im terrified of losing it or getting fired. Am I wrong for that? Why do I feel guilty? Im on Keppra to help with my seizures but It also gives me terrible mood swings. Any advice from anyone more experienced/any help is appreciated please.

Backstory: Had a really bad TBI in 2010 while dating a woman and she was constantly telling me I was "doing strange shit and making strange noises' every time I seen here. First seizure I ever had was while cuddling with her. I THOUGHT I was just looking at a poster hanging on her wall, but when I turned back to look at her, she was curled away from me, covering her mouth in shock, asking 'Sweetheart, WHAT THE FUCK JUST HAPPENED TO YOU?! I said 'Nothing. What the fuck are you talking about?!' She kept telling me something happened. I got mad and tried to run out of her apartment. She blocked her front door and talked to me for over TWO FUCKING HOURS, saying ' Something REALLY bad just happened to you! You can't leave!' & 'I haven't had stuff go this well with a man in a LONG time and you just ruined it.' She finally convinced me to stay, and we end up going to sleep afterwards. Well, about a month later out, I got violently sick. My temperature was 105.2 and I was hallucinating like a motherfucker. Thought I was going to die for 2 day. Turns out, I contracted viral meningitis and wouldn't find out until receiving a proper diagnosis of epilepsy in 2019 and putting 2 & 2 together. The relationship only lasted a few months after that, but I was CONSTANTLY having focal aware & impaired in front of her. Shit, I had a STRONG one while having sex with her once and thought I was going to vomit all over her. Over time, she thought I was becoming schizophrenic and dropped my ass. I spend the next 9 MONTHS begging her to take me back, She says no. She ends up stopping all contact and starts dating her ex, who she was MADLY in love with, and I LOST MY SHIT. Funny thing? Me and this guy share the same last name. I become verbally violent with this man like I have never been with anyone before in my life. Tell him four words you don't EVER tell someone unless you mean it. Cops got involved. (In hindsight, I was in full blown epileptogenesis during all of this) Embarrassing shit on my part. Last words my ex told me, when I was fighting with here new bf (they ended up getting married and having a boy, just like she said she wanted to do with me) was that I 'was no longer the loving, caring, generous, sensual man she fell in love with and that something happen and my personality was COMPLETELY different.' Her BF explicitly told me to never contact her again. EVER. Never heard from her again. That was in 2012.....and that was that. (Actually, she DID reach out about a month before her wedding with a simple "hey" email. I told her her husband said no contact & to leave me alone. She did.)

2019: Between May and October, I have 9 tonic clonics out of nowhere. First one was while taking a dump. Seriously. Sitting on the toilet at 2:30 PM and come to in my bed, with no pants on, at 7 PM. When I come to, my internal monologue is screaming at me: 'YOU HAD A SEIZURE.' Tell some people, they don't believe me........then I start having them in front of people. Can't deny that. Get put on Keppra in October 2019 and haven't had one since. February 2020, during COVID, it fucking dawns on me: 'Rease was trying to tell you you were having SEIZURES in front of her, you stupid ass. HOLY FUCK!' I want to reach out and talk to her about it SO BAD, but I abstain. Completely forget about it. Fast forward to July 2025, and just................it all hit me again. Cried for a month. Wanted to reach out REALLY bad. Was able to control it until Late March of this year. Sent her an email saying I really needed to talk but I understand If she doesn't want to. No response. Not surprised. Don't blame her, either. It just.............sucks, you know? I just CAN'T STOP thinking about it. I don't know if its the Keppra or the epilepsy or something else. So yeah......

Sorry for the dissertation. LOL. I'm not here looking for any diagnosis or anything, just trying to get some of my brothers & sisters opinions on the situation or see if anyone else has had an experience like this. Feel free to ask me any questions, and I do mean ANY, and I'll happily answer. No limits. And like Tupac said: 'Keep ya head up.'

I have no one to talk to about this. Me and my husband were having sex the other night. All the sudden I look up and he’s saying “baby we have to go to the laundromat” and I was just so confused. He told me I had a seizure while we were having sex and I peed while he was inside of me. I am so humiliated.

Hiya!

Just thought to ask if anyone has experienced their first seizure as an adult from fever? Without having any past with childhood febrile seizures?

I was pretty sick during christmas time and had a high fever (over 39C) for 4 days straight, and had a seizure on christmas eve morning. A doctor said my CT scan was clear and that the episode seemed to have happened due to the fever. I didn't think much of this diagnosis initially, but after trying to look into it more, many sources seem to imply febrile seizures happen purely in smaller kids only.

This kind of confused me, so I would love to hear if anyone else has experienced something similar? Or maybe share if they have any sources or information regarding this. Thanks!

My 91-year-old grandfather was completely independent and in very good health before this. Good blood tests, lived alone, mentally sharp, etc. One day he suddenly collapsed from a chair at home and started having epileptic seizures.
He has now been hospitalized for 7 days and has not really been awake since Monday. He is still breathing on his own, but he keeps having seizures despite multiple anti-epileptic medications.
The doctors have told us they are basically “treating blindly” at this point because they still don’t have clear answers. They have done a spinal tap/lumbar puncture, blood tests, scans, etc., but nothing has given a definite explanation yet.
They are currently treating him for possible brain inflammation/infection while also trying to stop the seizures.
He is on:
3 anti-epileptic medications (including Keppra/levetiracetam 3000mg and valproate)

antibiotics and 2 other medication for possible brain disease/infection

steroids

insulin

He only weighs around 57 kg and has always been extremely sensitive to medication. As family, it is very hard watching him become more and more sedated and weak while not seeing improvement.
They take blood from him constantly to monitor everything, to the point where nurses are struggling to get more blood from his veins anymore because he has been poked so many times.
The doctors say the next few days are critical and that they cannot predict the outcome. They also wanted to do a 24-hour EEG, but say he is currently too unstable/weak to transfer hospitals.
I know nobody here can give medical advice, but I would really appreciate hearing from people who have experienced elderly relatives with severe seizures, encephalitis, unexplained neurological illness, ICU stays, etc.

Has anyone experienced someone being unconscious/sedated for this long and then improving?
Or did things continue to decline from there?

I honestly feel lost and helpless watching this happen.

Real quick, don’t come for my grammar and spelling this is a 2AM post.

Hello there, I am curious if anyone comes out of their seizure episodes in a shear panicked state walking around? My first seizure happened May, 5th, 2020 and started happening due to my heavy alcohol consumption and it was a grand mal. Got checked out by a neurologist and tests done, and well addiction had its claws firmly in me. As well as a family history on my father’s side, kept drinking kept having grand mals. Well after a decade of heavy alcoholism and five of those years with a diagnosed seizure disorder, I will be one year sober tomorrow. I’ve continued to have seizures but they’re no longer grand mals or violent seizures I have way more calmer ones since I’ve gotten sober. However when I have an episode it feels like I go and live a different life and it’s a fairly dark and dismal surrounding. When I come to I’m terrified but also trying to jump my husbands bones while also being scared any crying (I could use some advice on seizures messing up my sexual desires)

I know yall most likely arent doctors but my current numerologist sucks and im currently in the middle if transferring so i need ti ask what siezure am i having if my after effects are delayed motor skills, brain fog, electrical feeling in my head after, tension headaches, bad memory, and forgetting goals but during the seizure its not mild at all my head feels insane like zeus himself is throwing bolts at my head and i have a brief moment of clarity and i can fight it enough to turn onto my side but i cant see anything at all and its always when im sleeping or waking up or going to sleep i also have this dread to even go to sleep now or no longer take naps unless i smoke a joint beforehand because it calms my mind this is what made me start smoking weed but weed doesnt help with the motor functions as mucj as it does the electric overstimulating feeling

Posting in another community but wanted to post here incase someone can help me.

I have experienced both panic attacks and focal aware seizures in the past. The last time I was having frequent seizures was during a unrelated psychiatric hospitalization. This was a side effect to a medication and the seizures stopped once I stopped taking the medication. Never confirmed through testing, just what my psychiatrist suspected. This was three years ago. A lot of the symptoms overlap (obviously).

I've been having these "episodes" recently and everyone in my life is telling me they're panic attacks because of my long history with anxiety, and I made an appointment with neurology but the next appointment was 5 months from now.

This is what happens (usually): I'm abruptly woken up by an extreme wave of nausea and confusion. I feel strong impending doom like something is "off" or I feel "weird" but I can't really make sense of it, where I am, or what's going on. I get so hot from the inside out, a CT with contrast is the best I can describe the feeling. Another odd symptom I get is my limbs feel small or I can't really tell how large/small my body is. Whether or not this is started by anxiety or not, it obviously triggers a panic attack. I feel like my brain is short-circuiting, I don't know how else to describe it. I can talk, ask for things like food and water but the words are fleeting and hard to catch. And then, after doing something to try and calm down, gather my thoughts, I can typically fall back asleep, but most of the time I will need to take Ativan.

These feel worse than panic attacks I've had in the past, namely the confusion and inability to control my thoughts but I've read that's also a symptom of panic attacks.

Does anyone who has experience with panic attacks have any input? Thank you so much.

Just turned 39 3 weeks ago. Had my first EEG 2 days ago. Got the results yesterday that I showed “bitemporal irritability putting her risk for partial to secondarily generalized seizures.” My Dr added notes in my chart about next steps including no driving for 6 months and to avoid/taper stimulants for ADHD.

IM SO PISSED RIGHT NOW. I have always been a super independent “I’ll just do it myself” type. I already feel trapped not being able to drive! And my ADHD meds are the only thing that helps me feel like I can function like a normal human.

This is mostly a vent/processing, but I guess if anyone else has gotten similar results I’d like to hear about your experience.

This is so...agh. I'm a teenager, in high-school. This happened today. I need input from...someone. Anyone else. No other adult will listen. I'm not 100% sure if this is the right sub to post this...I don't post here ever. But it's worth a shot?

I'm home now, but during third period at school I'd begun feeling weird. Nothing new, I always feel off, especially with my sudden health drop [explained in another post] but this was...wrong. So I went down to the nurses office so I can sit in the cot room.

In the cot room, I was sitting on the floor beside the cot. I was laying my head and arms on the cot. I began to feel like- weird? Shaky? I perked before trying to get up, but my body was shaking and I crumpled onto my side. I stilled for a moment before my like, head and shoulders were shaking/jerking. My eyes were rolling back. I couldn't move or talk or anything, but I was aware. Albeit it's fuzzy now. It lasted for roughly around a minute before I went still again. I couldn't move for a moment afterwards.

When I could, I got up - dizzy, confused, and frightened - and went to talk to the nurses. We have three. I explained what happened to the two that were there. They were unsure what it was. I suggested maybe a seizure. One said shit like "Seizures last longer than that" [As far as I know they can be from a few seconds to a couple of minutes. I didn't even tell her how long it lasted] "There would've been stuff happening before" [????] "You wouldn't be able to get up right after" Unsure of that. But I HADN'T been able to get up right after. My mother had also not believed me when I told her what happened, claiming all seizures were violent and resulted in things like throwing up and not being able to walk for hours afterward, due to her experience. Which...isn't true, as far as I know?

I just...I don't know. I feel fucking dramatic and crazy because that's how every adult is treating me, but I guess I need to hear from people who do have seizures. If this was one. I've done research of course and things seem to align pretty well, but hearing other voices will probably help...?

Thank you for reading. Rhasdghhdsaghda-

Edit: Long story. Shit ended up happening. Went to the ER with the help of my sister and her boyfriend [fucking godsends, I swear. Love them] and we got no real answers, but a seizure is still a possibility. So atleast that proves my mother wrong.

I’m not sure whether or not I’m having seizures or just panic. I get these sudden jolts of energy whenever I’m overstimulated, almost like I’m out of control for like 1 or 2 seconds then I’m fine, just shaken up a bit. Sometimes I get a random smell that I’m not sure is there. This I know can be caused by a multitude of things. I’ve had a seizure due to head trauma in the past, but my EEG has come back clean and the doctor told me chances are I’m ok and healed from that. I’m just wondering if anybody ever feels this too? Kinda weird not knowing what’s going on with my body/mind

I may have trouble describing this because I just had a seizure this weekend. But I’m not recovering as well as I did for my first four. my body and by my body I mean the skin just tells me that I feel weird. And I get scared. Like not scared of what’s gonna happen but like something scared me and your whole body feels it quick from your fighter flight, but then it goes away the next second. And then I’m trying to wonder what was I thinking about that scared me? I had 3 yesterday and twice this morning. Are these usual symptoms after seizures?

Hello all! This is my first time posting here and I don't usually post unless I'm in dire need of some more help. My wife is 2 months postpartum and her delivery was really traumatic. Like maybe a month or 4 weeks postpartum she would get these really bad shakes in the middle of the night before breastfeeding. She would start to feel really cold and week and then would shake. These episodes only lasted for like 3 minutes and then would stop with a heated blanket and her laying down. This would happen randomly but always would stop. Now 2 months and 2 weeks postpartum she had a random episode at a restaurant. We hurry up and left and she would shake in the car. We got home and she was still having a jerking movement. The next morning it was still going on. We went to the ER and now its even worse. Fast forward she is having jerking like seizures but is aware of everything. Sitting up triggers it or standing. Cold also can trigger it and she now talks in broken sentences and sometimes smacks her lips repeatedly. Her eyes will twitch sometimes also. She can barely walk also. Laying down seems to help the most but sometimes its too late and she has a seizure like episode that will stop with some medication that they give her through her IV. We are at the hospital for neurology. She is getting test done but they only seem to think its stressed related. They dont think its sezuire just yet. Has anybody experienced this before or heard of this before. I really appreciate the comments! Sorry if this is all over the place!

Hello, I’m 27, when I was 18 to 20 I’ve had 3 seizures, until I was 26 then I’ve had 3 splitting my head open, breaking my shoulder and my last one dislocated my shoulder and broke it again, 27 now 2 weeks seizure free, anyone else out their?

Hello, I live in the Boston area and I’m trying to find the best neurologist for seizures. I have not been diagnosed with epilepsy, they say it’s from stress. And I don’t feel safe with the one I currently have.

Any info would be helpful. I just had my fourth seizure this weekend and it has really bummed me out. I feel trapped.

Just a little rant.

I just had my second seizure last night/this morning at 2:10 am EST. I’m thankful for my wife, who was there for my first one over two years ago. From there I’ve only had focal seizures and I do not want to experience a full seizure again. Admittedly I haven’t been taking my morning keppra every day as it’s easy to forget, but sure enough this is the wake up call I needed.

The hospital wouldn’t give me an EEG, CAT scan or MRI, so I will be in touch with my neurologist and I’m anticipating I’ll be put on a higher dose. Here comes the keppra rage, the hospital appointments, and I’m sure I won’t be forgetting for a while.

It’s easy to forget how very important it is to take care of yourself. Health comes first and I hope this helps others with remembering to take meds.

I‘ve had panic attacks since I was around 8 years old, and still get them. I sometimes get these weird episodes where I out of nowhere feel detached from my body and my head feels really weird for a bit, i usually feel anxious as soon as it starts. And sometimes I get detached like that and I spell something weird and get the same weird sensation in my head. I’ve written it off as anxiety or mimi panic attacks, but could these episodes actually be focal seizures? What do focal seizures feel like? I’m not looking for definitive answers I just want to know if it’s worth looking into

Hello. Let me start this saying ive never had a seizure before this happening yesterday. I know I should've probably gone to the hospital after this happened but my parents refused to take me and I am medically dependent on them- I am an adult but i am disabled so still on their insurance and everything.

I started having an aura and thought it was a migraine coming on because I get those, so I went back to bed to try to sleep it off. When I layed down on my bed, I started convulsing and my vision went black. I dont remember what I did during it, but I remember the feeling of it happening. My body (legs specifically) were crashing into my wall next to my bed during it and I was very very sore when it stopped. I immediately called my mom after, panicking, and she sent my dad home to "watch over me" just incase.

The problem is, they dont believe me. I messaged my neurologist explaining the situation, and she thinks its because of my migraine (which I didnt have until after the seizure like episode), I had a non epileptic seizure. I dont know what to believe because my parents are trying to make me think it never happened.

Details+symptoms I had post seizure:

My pupils were very dilated after the event and were like that for a few hours post-event so I had a lot of light sensitivity.

Migraine post-event that I took Nurtec for (first time taking it due to changing meds)

My entire right arm was tingling and felt weird for the rest of the day post-event

I couldnt walk for like an hour post-event

Severe shakyness and tremors post-event that I still have 24 hours later, although it has died down a bit

Severe nausea

Severe tiredness post-event- when I calmed down I got exhausted and went to sleep after my dad got home

Very sore- my entire body felt like it was bruised

I remember the feeling of it but I cant remember what happened during it other than the feeling.

I have been having nightmares about having seizures during my sleep and feel similar when I wake up, but I've never had any evidence showing I have had them during my sleep other then bed wetting a few times.

I also had a med change recently but I dont know if this could be the cause because my neurologist says the meds dont combine or anything. I just started lamictal, however it is a small dose.

My neurologist isnt super concerned, but I am. I really wish to get testing done, but she is out at the moment. Another reason is if I do want to get testing done, I dont think my parents will agree and let me do so.

Was this a seizure or was it a "non epileptic seizure" like she said? I wasnt in anyway stressed before this happened. Thank you for any advice given.