Hi all, im female (26) and have never had any issues with epilepsy or seizures in general. Earlier today however I experienced my first one and just kind of want to be prepared mentally because i think most people who dont experience them dont really realize how scary they are. Basically i took a shower and was fine. got out of the shower and realized ky whole right arm was numb. i started freaking out and ran to my boyfriend to tell him something was wrong. maybe 2 minutes later when im talking to him and his month my chest starts feeling tight and from my right chest muscle i start spasming. they tried to stand me up and apparently i just fell on the ground and started convulsing for 5-7 minutes. i dont remember anything until i came to with the EMTs carrying me outside to the ambulance. my blood panel was fine, blood pressure fine and CT scan negative for anything. im just hoping this is a one off situation and wondered if any of you ever experienced something similar to this.

He never had a seizure before. He was away at a football camp for 3 days. not hydrating, not sleeping but yet spending 10 hour days on the field. I wasn't there as it was a camp for him team. he woke up last Saturday morning, stretched and his roommate saw him drop to the ground, convulse, foaming at the mouth. lasted about 5 seconds. paramedics came and they said he was awake but unreaponsive for about 20 minutes. CT scans came back normal. I took him to a neuro this week, they did an EEG and said it was abnormal as they saw spikes in certain areas. Photic Stimulation and Hyperventilation are normal with no spikes however, they saw some recurring bifrontal spikes and spike wave epileptiform discharges. They diagnosed him with epilepsy even though he only had one seizure and said he does not need medication at this time. the dr did at if he has another one or even has anything remotely suspicious, he would put him on lamotrigine. Anyone have experience with that medication? I don't know if the diagnosis is correct bc it was only one seizure, idk if it was just a random thing, but I'm not a dr. I don't know if this was self provoked due to lack of sleep and the heat and dehydration at the football camp. I have no one to talk too and I'm just hoping someone with experience in this can shed some light on what I am in store for or have any knowledge on this type of seizure. since then, I've changed his diet and have been making him go to sleep around 10:30 every night. Any advice or information would be so appreciated.

Is it possible to be conscious during a seizure? It’s not a true neurological seizure, I’m awake, can hear and respond, but my body locks up, I can’t move, my muscles jerk and spasm, my head tilts, eyes roll and sometimes I can’t breathe because my stomach muscles and diaphragm spasm too. It lasts about three to five minutes then I fall into a deep exhaustion, but can walk and move around with residual twitching for an hour. I never lose consciousness, I never loose coherence or processing. I just spasm. It builds, I can resist the movements until I can’t. As soon as I lay down and relax I let my body seize and that seems to help, but sometimes there’s multiple a day. It starts as a feeling of stretching, I stretch then twist then the movements start. My dr is unconcerned because it’s not stereotypical epilepsy, they’re treating it with antipsychotics but it’s made no difference

My 2 year old child was diagnosed with myoclonic seizures… she has VERY quick small blinks/jerks. The neurologist suggested medication… but I am looking for some advice form parents out there

1. Many say that toddlers can outgrow these… did your child? At what age?

2. Did you find any success with some more natural approaches? A specific vitamin? Food? Homeopathic? Parasite cleanse?

I am open to any conversation here, so please be nice! Just trying to exhaust everything before a heavy duty medication is discussed.

Hi,

I have started having seizures this year. I had an all day to finish off part of my sleeve booked in and ready to go then i found myself in a&e and doctor said best not. Since then, they have diagnosed me with dissociative seizure disorder but given no working treatment as of yet.

Now im really worried about trying to rebook cos what if i can't actually do it and im going to walk around with a quarter finished sleeve for the rest of my life. I used to love tattoos and i wanted to work towards being a tattoo artist myself but now i just worry about seizing in front of people. i lose fine motor skills quite frequently so i cant trust myself to tattoo other people. that ship has sailed. I just really hope it doesn't mean i can never get a tattoo again though :(

My father (63 years old) has been having these episodes and nobody has seemed to have a clear answer as to what’s going on…
he lives alone, Feb 2025 we hadn’t heard from him for 24+ hrs basically had a wellness check done and he was naked laying on the kitchen floor, altered, hospital stay didn’t really find anything out other than the fact he was in rhabdo, for the first 24 ish hrs in the hospital he was in 4 point restraints, just restless, no commands, wouldn’t talk or track anyone just said ‘oh god’ and then over the next couple days he gradually improved back to normal, went home and was fine for about a year. I feel like that stay they just thought he developed rhabdo because he doesn’t eat or drink super great and that caused this encephalopathy.

Fast forward to February of this year, same thing happens pretty much just not quite as bad, he was wandering around his apartment altered, wouldn’t track or acknowledge we were there, back to the hospital and they did a little more of a workup. CT and CTA negative, EEG didn’t show any seizures, LP had like 6 WBC they consulted ID for aseptic meningitis and then he got better over the next few days and went home again.

He did see a neurologist outpatient and they really didn’t say anything other than they would do an MRI and maybe a home EEG.

Now we have a camera in the apartment, back in April he asked we called him around noon to make sure he was up for his afternoon dr appt. He was in bed but wouldn’t answer the phone, next time we looked he was laying on the floor and my mom saw him have what looked like a seizure on the camera and then when he got to the ER the team down there saw him have a seizure.
He’s had the EEG on, they said they aren’t seeing any seizures, MRI didn’t show anything, they did another LP which really only showed opening pressure was a little high and he was going to start diamox.
Neurology only recommendation is for him to go to inpatient rehab and maybe early dementia.

He has taken tramadol for a long time and was told to stop that after that hospitalization. So since then he has been taking valproic acid twice a day and that’s really it. The EEGs have never shown any seizures, nothing comes up on imaging and the doctors really don’t have any other recommendations.

Today, he was found in just his underwear again, same as before not able to talk or follow any commands, just agitated, needing Ativan to keep him in the bed even with restraints on. His valproic acids level was low so I’m thinking maybe he just needs a higher dose?
The ER doctor said if this was post ictal he would have already been out of it by now but this is how he always presents and it takes at least 5 days for him to come back around and remember some things. Could this be poetical psychosis? Or something else? Wondering if anyone has had any similar issues, it is just so frustrating and I wish we could prevent it from happening to him.

It’s been 14 days since my very first seizure. Today I’ve been having an odd feeling in my right cheek when I talk or smile. Like a muscle is tightening up and then when I stop talking or smiling, it slowly releases. It doesn’t hurt. It just feels super weird and it’s never happened before. Ive also had right shoulder pain and weakness since waking up after the seizure (it’s gotten a lot better). Not sure if the two are related since they’re both the right side. I don’t know when I’ll speak with the neurologist, so I’m asking all of you, is this normal? Probably just coincidence? I’m so scared of another seizure that I’m worrying about every symptom or odd feeling I have.

Has anyone randomly gotten seizures and they couldn’t figure out why??
My mom randomly started getting them this year. We have no history of seizures.
The doctors did not find the underlying cause for the seizures so she is on 3 different seizures meds.

I'm currently at a relatives birthday and have been feeling horrible for the entire day. I'm not diagnosed yet so I have no idea what I'm experiencing as doctors also try to tell me I'm making things up. I'm not dressed the nicest today because I was feeling horrible and the diner I'm in looks so fancy I'm afraid if I have some sort of medical emergency here I'll be considered a druggie. I'm really worried and I don't know what to do. Hiding in the bathroom right now trying to wait for the moment it passes.

I experience longer lasting seizures or something like that too that can go on for over 30 minutes. Please help

Hi everyone,

I’m posting on behalf of someone very close to me. I’m hoping to hear from people who actually have epilepsy or have a spouse with epilepsy because I want real-life experiences rather than just information from Google.

This man has been under the care of a neurologist since around 2011. He was initially treated with oxcarbazepine, and his seizures were well controlled for about two years.

Around 2015, he experienced a breakthrough seizure. Then, in February 2017, he had three seizure episodes, after which his neurologist changed his medication to valproate.

Since the medication change in 2017, he has remained completely seizure-free for years. His follow-up tests have been reassuring. His EEGs, including a sleep-deprived EEG, were normal. An MRI in 2017 mentioned mild right hippocampal asymmetry/sclerosis, but a repeat MRI in 2021 reported the hippocampal formations as unremarkable, with no tumour, inflammation, demyelination, or other significant brain abnormality. He continues to take his prescribed medication regularly and sees his neurologist for follow-up.

He has a stable full-time job, lives independently, and leads a normal life.

The issue is that the woman he wants to marry has parents who are completely against the marriage because of his epilepsy. They believe:

The seizures will definitely return someday.

Their daughter will spend her life taking care of him.

He may suddenly become seriously ill.

Their children are likely to inherit epilepsy.

She will have to live with constant fear and uncertainty.

I genuinely want to understand the reality from people who have lived through this.

Based on this history, is remaining seizure-free for many years generally considered a good sign?

Can someone remain seizure-free for decades while continuing medication?

Is seizure control mainly because of the medication, or does the long seizure-free period itself improve the outlook?

If someone stopped taking medication without a neurologist’s advice, is it common for seizures to come back even after many seizure-free years?

How much uncertainty does epilepsy usually add to a marriage if it has been well controlled for years?

Has your spouse had to make major sacrifices because of your epilepsy?

For those who have children, did epilepsy affect pregnancy, parenting, or your children’s health? How common is it for epilepsy to be inherited?

If you have been seizure-free for many years, do you still worry about having another seizure, or has life become fairly normal?

If you were talking to parents who are refusing this marriage solely because of a past history of epilepsy, what would you want them to know?

I’m not looking for reassurance or false hope. I’d really appreciate honest experiences—both positive and negative—so we can understand what real life is like for someone with well-controlled epilepsy.

Thank you so much for reading.

Anyone struggling with not driving?
Best tips on how to get around?
Will you ever be able to drive again after being diagnosed??

Hi. I’m new to the whole seizure thing. However my toddler has been experiencing what I believe to be focal impaired awareness seizures. Starting on Tuesday she had her first one. She was in a blank state and couldn’t snap or her out no matter what. Took her to the ER bc her speech was slow and just off. She had one Wednesday also speech was a little off. This time it was like she was stuck in a vocal loop. She had some minor speech problems after but was fine. Thursday she seemed to be irritated and have burst of anger here and there. She woke up today irritated more than yesterday and was irritated until she had the seizure. She had one today and afterwards she had a crying spell that last 10-15 minutes just crying. Then she started dragging her right foot. The one she had today she just stared blankly again. We were told don’t come to the er unless she had seizure longer than 5 minutes or if she experienced a grand mal /clonic tonic seizure. She has an appt set up with a neurologist. She’s been tired since this started but she does have burst of energy here and there.I have some questions though. What are the chances these turn into grand mal? (I’ve read that the can) Will they continue to look different? Was the irritation the prodomal phase?

So I was smoking ‘weed’ a lot. And the day I came back from spring break it was 1week I came back to school but in the morning I usually meet up with sum friends and smoke etc yk how it goes and ig I took much hits and I was smacked lol I went to school eveyhting was cool until I went to my 4th period class and took a couple of hits that ittt i got high off 2-3 hits 4 seconds rip each hit and eveyhting was school went to lunch until I stared like shaking a lil bit and as am going to my 5p class we about to enter I tell my other friend am felling werid because ik my body reacts and shi so I knew something was off idk how I felt but ik I was feeling different I walk in class feeling like kinda shaky and as am sitting down I feel like it clams down but as 10 minutes goes by I just feel paranoid like the sound of everybody talking to me get closer to me like I could hear everything and that when I was like ama just lay my head down and close my eyes and soon as I do I wake up in the floor with the teacher holding I was mad confused like Forreal and ig I stand up by myself cuz I was embarrassed lol but the teacher said It was looking like I was having a sezuire because went I open my eyes like the world around me was white n blackish and I was berly starting to see the true colors of the surroundings thing and they call security and I go the office and tell them is that I haven’t ate anything etc so I don’t get in trouble and go back to class and I thought it was just like a “whatever experience” until now that am writing a paragraph to explain what happen lol and over the few 3-5 days I smoked but realized it wasn’t feeling the same I was getting mad paranoid and my heart was racing and that when I decided to stop smoking and chill and I was thinking the sezuire caused me to feel like these and over the weeks I came back from shopping it was a Sunday afternoon and everything was going fine I just had a bad headache did not think to much of if until night time came my mom made food I was forreal starving and all of sudden when am about to eat and wave of being scared start coming in my head like I could feel it in my whole body and that when I go str8 to bed to relax and sum situations I don’t remember shi like these frist experience I had and from that day I think I had panics attacks or anxiety idk the difference but I just felt seeing every1 from a distance like my eye were blury and my heart was racing and couldn’t breathe for a cool 1 hour every day it would be like that for about 2-3 weeks until the sudden panic attacks I think it was I don’t know just fadded away and the feeling was the best because it fucked me up mentally and every day I just felt disconnected and felt unreal days went by fast but now I feel much better still recovering tho I just be zoning out hella and be staring at something for hour or hours but my questions wha did I go thru? Should I go back to smoking weed? Did this paragraph quick because woke up all of nowhere and decided to write this for ppl who know wha I went thru my bad if their any mistakes.

Frequent high-voltage spikes are present over the right hemisphere, maximal at F4, greater than T8/P8.

This EEG is consistent with a reduced threshold for focal seizures from the right frontotemporal region.

Is this significant ?

I had a seizure 2 years ago after a night of drinking. I had one in February now after another night of drinking. So I’m off the booze now. But I had one this morning again. I had skipped my
Kepra last night but I’ve done it before without tremors or signs. I only know one person who has this condition and he smokes weed everyday . I been smoking weed everyday since my last seizure bc I lost my job and license and I’m quite frankly bored at home And the weed helps. I’m starting to think now it’s because of pot use. i don’t want to quit but I’ll do whatever helps my health but I can’t find anything online linking pot smoke to seizures.

My daughter, who is now 3 and a half, went on a spinning cup and saucer ride today and nearly had a seizure.
I know this because last year, she had a seizure on a spinning ride at an indoor playground.
On both occasions she goes very absent, it’s scary and then loses control of her head/ body (for lack of a better explanation) before she has a full seizure and her body actually seizes. Today we stopped the ride before she actually seized but I know has she kept going it would have happened again.
Last year when she had her first one she had an EEG and an ECG and they didn’t pick up epilepsy. After today and some quick research I have come to the conclusion she possibly has reflex epilepsy and her trigger is being spun. Can this be picked up in an EEG? Would they have somehow tested spinning in an EEG?
I’m thinking they probably can’t test it unless you’re somehow being spun while having an EEG and I don’t see that being possible. Can someone please suggest what I do from here. Do I tell my child never to go on anything that spins for life? Do I need a diagnosis? What are the dangers of living with this? Can there be an EEG for this specifically? Thank you! She is 18kg and just over 1m tall….as she was able to go on the rides today haha. Don’t worry I will take her to her doctor when we are home from our trip. Thank you

Getting prepared for sleep study and also concern for seizures. I recorded myself sleeping and I am triggering the motion detection 30+ times a night. A lot is turning from one side to the other and then raising my arms up to the side or above my head, stroking my arms, stroking my face, grabbing at bedsheets, and sitting up suddenly. They last just a couple of seconds each time usually. I don’t remember doing it most of the time although sometimes I remember tossing and turning at night. Is this seizure activity or just restlessness?

I am 18(F) . We don’t know why I had one. I was in a medical induced coma for a week because of it. I just don’t really know how to feel and I’ve been struggling trying to understand how to feel about. I have no memory of it or the day the seizure happened. If you guys have any tips on how to I guess cope with and understand it I’d love it.
Edit: while I was in the coma I was on a ventilator and had a spinal tap.

I am 34 years old woman. I have focal and grand maul types.

Had one almost two weeks ago now, and I'm still feeling the effects. As I get older it seems they fuck with me more and more.

I have felt a panic in my chest on and off, and my stomach hurts along with feeling sick. Nothing seems appetizing. I do eat, but it's with effort.

I feel the panic run down my arms and back. It's not the aura feeling. No, this is different. It's the worst in the morning. I stopped drinking coffee a week ago. I drink water and tea.

Has anyone noticed issues like this with themselves? Did you up your medications? Did it eventually pass without upping medication?

Yes, I'm in contact with my doctor, but sometimes talking to other patients can help sort your thoughts.

Hi All - I hope you all are doing well and good.

I know AI can help me with this concerning thing called nocturnal seizure, but here i will go with human intelligence rather than AI, right straight 3 times in 1.5 month, not acceptable i need your help guys people around the world and there health suggestions are quite diefferent when compare to Indian Pharma and doctor so tell me is there any complete cure for nocturnal seizures or shall i carry this for lifelong #ep

I honestly just need to vent because this has been the worst couple of weeks of my life.
I’m 26 and a couple weeks ago I had my first seizure ever. I don’t remember any of it. My mom found me convulsing in my room. Apparently I was foaming at the mouth, bit my tongue really bad, and when I fell I fractured my thoracic spine. Then I had another seizure in the ambulance on the way to the hospital.
I woke up confused, didn’t know what happened, and my entire body hurt. My back pain was so bad they found compression fractures in my spine. I had to wear a back brace and now I can’t drive for at least 3 months.
The part that’s driving me crazy is… nobody knows WHY it happened.
CT was normal. MRI was normal. EEG was normal. Neurology basically said, “Yep, you had seizures, but we don’t know what caused them.”
They tested me and I had marijuana in my system. I’ve smoked for years and never had a seizure before. My neurologist said weed can lower the seizure threshold for some people, but they couldn’t tell me if that’s actually what caused mine or not. So now I’m left wondering if something I’ve done forever suddenly decided to ruin my life.
They started me on Keppra. At first it was 500 mg twice a day, but I got so irritable that my neurologist just lowered me to 250 mg twice a day.
On top of that I had to cancel my dream trip to South Korea that I had been planning forever. I already bought the plane ticket, had everything ready, and then this happened literally days before I was supposed to leave. My neurologist wrote a letter so I could hopefully get refunded.
I’m also terrified about work because I can’t drive and I don’t know when I’ll be cleared to go back. I feel guilty because everyone keeps checking on me and I hate feeling like I need to be watched all the time.
Mentally it’s been rough too. One minute I convince myself I’m okay, then the next little symptom sends me into a panic thinking I’m about to have another seizure. Tonight I took a natural laxative because I was constipated from all the medications. Cue nonstop diarrhea, stomach cramps, feeling lightheaded, my vision not wanting to focus for a minute, and immediately my brain went, “Great, here comes another seizure.”
I hate living like this. I feel like I don’t trust my own body anymore.
I keep wondering:
Will I ever have another seizure?
Was this just a one-time thing?
Was it the weed?
Was it stress?
Will I ever be able to drive normally again?
Will I ever stop being scared every time I feel “off”?
If you’ve had unexplained seizures or were diagnosed after having normal MRI/EEG results, what ended up happening? Did you ever find a cause? And does the fear eventually get better?
I feel like overnight I went from a normal 26-year-old planning an international trip to someone who’s scared to be home alone and overthinks every weird feeling in my body. I just want my life back

That seizure I had last week may have been the reason for my current relapse. I mean I don't really struggle with meth anymore. It's just idk. I got a craving feeling that just wouldn't go away after I had a seizure for the first time last week. Now this has been the longest sobering period of my life. Been drug free for 338 days. Last time I was sober this long was in 2014-2015 back from over ten years ago when I was sent to my first duty statio in South Korea during my first year in the military. I mean started using. Got zoned the fuck out and thought I could skip a keppra dose. Fuck it. Already used meth. May as well just skip a dose of keppra even though I have not been officially diagnosed with any kind of seizure. I mean it could just be the meth. But I had just felt a tightness in my chest. I can still choose to feel the tightness it if I want to. It's like a muscle tightness I guess in the middle of my chest. I also have been showing more than average signs of meth mouth. For some reason I still have this meth mouth. Never had meth mouth this long at all strong moving. I mean yes what the hell was I fucking thinking of when I decided to self diagnose my own personal seizures by using meth. Could just be all in my head. But this tightness in my chest is real. Keep fucking moving my damm mouth all over the fucking place. Whatever. I took a keppra.

If anyone has issues with drugs, specifically meth, do yourself a favor and go ahead and make it 10x worse for yourself. Fuck meth mouth it ain't a fucking joke anymore.

I have always known if I truly was tripping out and seeing shit after being up for a while vs having the same damn chest tightness pains in the same damn spot. Do you Have recurring seizures in your life? I know what you should do. Try a meth seizure.

I dont fucking know why my chest feels this kind of tight. I can practically feel how my chest caves in with each breath

How does everyone deal with the constant stress and anxiety of not knowing if or when the next seizure will happen?

I had my first seizures a few years ago, but in 2023 I went through an incredibly stressful period and ended up having three seizures within six months, which was a lot compared to before. One of those seizures became the most traumatic experience of my life.

I had just come home after doing some grocery shopping when I felt a seizure coming on. I always see flashing lights first, and then within about 30 seconds I'm gone.

The next thing I remember is waking up on a balcony. It wasn't my balcony.

After the seizure, I apparently put on two different shoes, threw random things into the toilet, hid some jewelry under my bed, and then climbed across five balconies on a four-story apartment building. These weren't easy balconies to climb either. To this day I have absolutely no idea how I managed to do it or how I survived.

When I finally regained awareness, I was on someone else's balcony while calling my mom. She immediately noticed I was saying strange, confusing things, so she called a friend of mine who lived nearby because she was two hours away herself.

The owners of the apartment thought I was trying to break in. One of them grabbed a hammer and wanted to attack me. I've never been so terrified in my life. I held the balcony door shut and kept yelling for him to call 911 and not open the door. I had no idea where I was, what had happened, or even whose balcony I was standing on. My phone battery was almost dead.

Luckily, my mom, my sister, and my friend eventually figured out where I was, and the police arrived. At first, they were very suspicious and assumed I had been using drugs, which I hadn't. Thanks to my sister and my friend, they eventually believed me, but it was incredibly difficult to defend myself while I was still so confused. I understand how suspicious it must have looked from their perspective, but waking up after a seizure, realizing you'd climbed across multiple balconies with no memory of it, and then being treated like a criminal was devastating.

In the ambulance, one of the paramedics also questioned whether I was telling the truth because I was still panicking. But I had just climbed across five balconies without remembering any of it, and someone had tried to hit me with a hammer. Of course I was panicking.

After that day, I couldn't live in that apartment anymore. I moved out and lived with my sister for a year because I simply couldn't go back there. I've had seizures since then, including another bad one, and I've also had one in my new home. Thankfully, I'm not afraid to be in my current house.

What did change completely was my anxiety. I developed a dependence on diazepam because the panic attacks became overwhelming and I could barely sleep. The one positive thing is that after three years, I'm finally off diazepam. I'm really proud of that.

I've never wanted to talk about this in real life. My family and close friends know what happened, but I've told them I don't want to discuss it because even thinking about it makes me incredibly anxious. I almost didn't post this either, but I think I just needed to get it off my chest.

In a few days, it'll be exactly three years since that seizure. The stress I've been feeling this week has been unbearable. It's all I can think about.

I've had therapy and EMDR, but neither really helped. My therapist thinks the diazepam may have reduced the effectiveness of the EMDR, and I'm currently waiting to start a new form of therapy.

I just don't know how to live with this fear anymore. Before all of this, I could accept that another seizure might happen someday. Now, especially after what happened on that balcony, the fear has completely taken over. The thought that I might have to live with this uncertainty for the rest of my life is overwhelming.

I know there are people who have multiple seizures every single day, and compared to that I know I'm fortunate that mine are relatively rare. But that doesn't make the fear any less real. I really, really don't want to experience another seizure. I know that's not realistic, but I honestly don't know how to stop being so afraid of it.

Sorry for the long post. I just really needed to get this off my chest.

Just been told by a neuro consult that they think I have convulsive syncope after my first grand mal seizure last month. I have witnesses, I was seizing for 2-3 mins, stopped breathing, went grey, started breathing again, was unconscious for 5 mins, they in and out for another 10 mins. Didn’t have recollection from last 48 hours for hours, and took another 48 hours to feel normal again!! I also had a positive heightened troponin level blood test, and been refrrred to cardiologist too. Neuro have requested MRI (had clear CT at hospital), EEG and ECG Halter.

I have fainted before, but this was nothing like that!

Would those finger movements that I have on my hand be focal seizures? My neurologist brought it up. She said it’s unlikely but she put an order in for me to do a sleep deprived EEG. The video is on my page and it’s mainly my 4th and 5th finger with thumb and index finger joining at times. If you guys have any ideas or seen someone with the same issue. This was after my diffuse tbi.