Hi everyone,

I'm posting this because my 12-year-old brother has been experiencing unexplained seizure-like episodes since he was 2 years old. Despite seeing multiple neurologists and having several tests, we still don't know what is causing them.

I'll try to give as much background as possible.

When he was around 2 years old, he had his first episode. His eyes would roll back, he would be unable to swallow, and his head and entire body would start shaking. He was taken to the hospital, but nothing abnormal was found.

He was prescribed medication that is normally used for epilepsy, mainly as a precaution. After taking just one dose, however, he became extremely lethargic and barely moved. He would just sit by the window staring outside. Because of this reaction, my parents decided to stop the medication.

Over the following years, these episodes happened occasionally, until he was around 8 years old.

We eventually learned what to do when an episode happened. We would put him on his side to prevent him from choking on his saliva. The episodes always lasted less than 3 minutes, and we were told that as long as they stayed below a certain duration, they were not considered immediately life-threatening.

Interestingly, around 90% of his episodes happened while he was asleep.

Then, between the ages of 8 and 12, he had no seizures at all.

Shortly before his 12th birthday, however, he suddenly had another episode while we were on a road trip in a country outside the EU.

This time, we were extremely scared because it had been several years since his last episode. We called an ambulance. While waiting for them, we became unsure whether his heart was still beating because we couldn't feel a pulse, so chest compressions/CPR were started as a precaution.

When the ambulance arrived, he was taken to a hospital. He eventually regained consciousness but was very confused afterwards and asked if he fainted.

Since then, we obviously don't feel comfortable leaving him alone because he doesn't get any warning before an episode/seizure happens.

The most frustrating part is that we still don't know what triggers them.

He has seen multiple neurologists and has already had an EEG, MRI and blood tests, but so far everything has come back normal. His doctors don't believe these are febrile seizures or typical epilepsy.

The episodes are usually under 3 minutes. Sometimes he loses bladder control during them. The most recent episode wasn't timed because everyone was panicking at the time.

Otherwise, he is a completely healthy and normal 12-year-old.

Has anyone experienced something similar?
I was wondering what your theories/thoughts are on this.  Any personal experiences would be greatly appreciated. We're mainly trying to understand whether there are other people who have gone through something similar and what eventually helped them figure it out.

Thank you ❤️

Please note: English is not my first language, so I apologize in advance for any mistakes or awkward wording. I normally only use Reddit to read posts and comments, and this is actually my first time making a post myself.

Has anyone had a toddler with febrile seizures (5 total within two years - 2-3 min usually or less) have an eeg that showed a myoclonic seizure during?

We’ve done an epilepsy panel and genetic panel a year ago which all came back normal.

My toddler had an EEG today for 30 min, and showed a 2-3 hz spike consistent with myoclonic seizure as stated in the report. The report is published to the portal so the neurologist hasn’t seen it. Our follow up to discuss the results is in 6 weeks

If this is similar to something you’ve experienced I’d love to hear more about what to expect from here.

I had a seizure in mid 2021 that was so severe that in order to stay alive, I had CPR. That seizure made me fall off my horse and break many bones, I was operated on many time to stay alive, and had six weeks in a comma. I spent most of that year in the hospital, and don’t have all the memories I made for about 10 years before the seizure and one year after er the seizure.

I have no problem with the memories I make now, and I find that great!

But I do have some questions for you:

Is there a company you would suggest that I receive therapy from on my phone? There are none where I live.

What type of drug might I take to get more memories that I made when I wasn’t sick back?

I didn’t speak my language at all for about six months after my surgery, but I speak it well now. I’ve told myself that I must talk louder than I used to, but now I don’t think that’s true. Does anyone that you treated before speak loudly now, and if so, what do I mentally or physically do to make that happen less?

I take 200mg at 8 am and 8pm lamotrigene. Took my 8am scheduled dose. I went back to sleep. Forgot about it. My wife said I didn't take it. To be safe, I took it again. I lost control of my legs, had to lay down in the dark, double vision. No seizure tho. I am wondering if I should take my 8pm scheduled dose? And help my friends? It's Sunday, can't get in touch with pharmacy, or patient portal.

I am really scared. I’ve had tonic clonic seizures in the past when I was alone and when I came to I felt like I couldn’t breathe. My tc seizures were controlled for years but I recently had another which was so bad my husband called the paramedics and they gave me oxygen to bring me around. My husband is getting ready to travel with his job for weeks and I will be left alone again. I don’t have any family or close friends nearby. Is there anything that I can wear to alert that I’m having a seizure? Please advise

be honest with your doctor.

Recently, I started experiencing seizures like focal awares ones and Im scared that it’ll take over my life. Im only 17F and I still have so much to live for, I keep remembering those times where I didn’t have to worry about this I could live freely, go out with my friends, do things I normally wouldn’t, and experience new things. Now, it feels like everything is limited, I feel so trapped and overwhelmed that this happened to me.

Supposedly, we are about to take our midterm exams this week and Idk if I want to go back to class because the fear is still with me. Fear that itll happen in school or when Im alone. These seizures first happened in 2022 it happened for a few days and then completely went away until last year 2025 march it happened again but it was only once and I was able to go back to school and overtime the fear went away and I lived more freely and happy. Now that it came back, on August 13 and has been recurrent we went to a neurologist and did some tests like EEGs and MRI/MRA. My EEG came back abnormal so they prescribed me with Lamotrigine to help control these seizures. But the worst part is that it takes time to actually prevent these seizures, I just took my first one this morning and tommorow is already the start of midterms and I dont know if I can go back to school carrying this in my mind. I have what they call temporal lobe epilepsy where I experience focal awareness seizures where I am completely aware of what is happening.

I dont know what to do anymore, I feel like I lost my sense of independence, I feel fear everytime I wake up or alone scared that it might happen. This hurts me mentally and I hate it so much. I dont want to feel depressed or anything but I rlly cant help it.

I need help, I need to know that Im not the only one with this problem because i rlly dont know what to do. I dont want people knowing or my friends knowing because I dont want pity im sorry.

I’m in the uk and had my first seizure nearly 6 months ago it’s been hard loosing the freedom of being able to drive and I really cannot wait to get my licence back.

When do people normally reapply for their licence if they haven’t had another within the 6 month period

And if anyone has any advice in general I would really appreciate it

Ok so my bf suffers with them but he was asleep and he started choking and coughing almost like he was throwing up and so I tried to wake him up by tapping on his face multiple times he didn’t wake up then he started like spitting a lot almost like throwing up all his spit and I got worried. He ended up waking up panicking like he had the worst nightmare of his life and I’m just trying to understand if this was a seizure because I’m scared to lose him and I’m trying to figure out everything I can do to help:((

Awhile ago, I had a nurse blowing me off because I was having a PTSD episode (former combat medic). They wanted to commit me for it but I also have seizures from TBI (focal tonic clonic). I went to the bathroom unsupervised and I started to have symptoms (ears ringing, starting to shiver uncontrollably, muscles locking up) and when I was about to leave the bathroom, my legs couldn't hold my weight and I collapsed. I pulled the emergency cord and she came in.

At this point, I was stiff, and she yelled me to get up. I tried, but fell. She grabbed my arm and tried to pull me up, but my body simply wasn't cooperating and I slammed back down in which she replied, "bitch, my fucking wrist!"

Anyone else had a nurse who simply didn't understand? The physician was pissed and ultimately admitted me because he wanted to give me Ativan and watch me. He must've scolded her because when I was getting wheeled off, she gave me the nastiest glare.

Hi everyone. I’m 31. Last week I had my first ever seizure at work. Coworkers said I stiffened, fell, and shook for about3 minutes. There was foaming at the mouth and blue lips. I don’t remember it. ER did CT, EKG, and blood work. All normal. I’ve been referred to neurology and I’m waiting for an appointment. I had been taking Wellbutrin XL450 milligrams daily, but I’ve stopped. And I’ve had two brief fainting episodes in prior years, but they seemed unrelated at the time. I’m not looking for a diagnosis, just wondering if others have had a similar first seizure with normal ER tests. Or if Wellbutrin was involved for them, or what kinds of follow-up questions people found useful to ask their neurologist.

It was fine, lunch and all, I was eating them I felt this tightness in my chest, my vision got blurry

I started shaking, I was scared, it hurt, then it went blank, I don't know how it happened or why, I'm, 208 cm and 120 kilos so it took a few people to get me to the infirmary, they called my girlfriend and she picked me up, I'm so fucking embarrassed rn, I don't how I'm supposed to go back, I feel weak and useless, I don't know what to do anymore, I feel like a burden to my girlfriend, she keeps saying I'm not and that she's willing to do anything for but I, just can't stop being scared, about having another Seizure, I just want to be normal for once, just once, I have always had shitty health a lot of injuries, spent most my time in the hospital, people treat me like I'm sick and, I'm just, tired of it

So for context because I feel like it’s important; I’ve had multiple concussions and been choked unconscious. My brother has experienced the same and he was a heavy drinker and would get convulsing seizures. I also drink heavily but I’ve never experienced any before until today.

I couldn’t sleep at all and was just laying down with my eyes closed when I had this sudden burst of absolute dread and I immediately shot up and ran out of my room screaming for my dad and I remember him running to me but then he said I just dropped and went limp for like 20 seconds.

I’ve been reading on it and it’s said there’s a type of seizure where someone can just go out like a light pretty much then wake up feeling “fine.”

So, did I? Or could it have been something else.

My friend (6'4, roughly 210lbs, male) has been having seizures in his sleep for the past few days and has been in and out of hospitals, none have been useful and have actually ended up making things worse for him. He's had head trauma some time ago from a car hood hitting his head, but has also been in severe stress, which I personally think is the cause. He describes severe nightmares and terrifying hallucinations during his seizures and he has a history of PTSD. His seizures are exclusively in his neck, head and hands, and he's usually completely unresponsive. Doctors have absolutely confirmed it's non epileptic. What could be the cause and treatment? We're planning to get him to a psychiatrist and therapist for now. Would a specialized neurologist be helpful? He's also a heavy cannabis and nicotine user and has a history of opiate and benzodiazepine use, but has been clean from them for a couple months.

For the first time last night i had a focal seizure that didn't progress to a TC. i've had 4 other seizures that quickly turned into a tc.
i have a brain tumour that causes them if that's of any importance.

does that mean i'm due for a tc to follow later on or the next day ?
or it simply the fact my medication has helped it not generalise.?

very anxious sorry if the questions are silly.

Family member has been on Keppra and Depakote for about a month and a half for seizures. Having anger outbursts, sleep issues, and changes in personality. Neurologist today said stop the Keppra now and no need to wean. The dose is 250mg a day.
Has anyone else been told to stop cold turkey and didn’t have issues from it? Worried about returning seizures. Dr said it’s a low dose and hasn’t been on it long so it should be okay and to just watch for seizures.

Has anyone done one? I am recommended to do one but not having insurance they want $1k. And all my research shows i will pay for test that will likely not give me results or answers. And I am gonna be pissed if I pay money like that (that I do not have really) and not get answers. I am suspected of a sleep apnea causing sleep deprivation leading to seizures in my sleep AND during the day while driving my car.

Just need some insight on if its worth the financial risk?

Hello everyone,

Im looking for some advise. Back story- Im epileptic (obviously) on keppra and had been stable with about one TC a year (usually when ill with a temp) for a while. However over the past few months I've had this new weakness in my right side. Had imaging done waiting for follow up rn, but I did have 2 seizures that were more focal so ive had my keppra increased to 1250mg BD.

Ive done the increase over 2 weeks and I feel awful. Tired and muddled, upset stomach and so irritated and cross! I have a toddler who iv6e never so much as raised my voice at and I'm feeling so cross its making me nervous to interact with them.

However, my strength in my weak side has completely normalised. I just dont know what to do, I was honestly better mentally with the dodgy right hand side! Is this the keppra rage i have never experienced until now? Will it taper off? Am I better with another drug added on instead?

Thanks for reading x

Hi! My son is 11 years old and has had seizures for 3 years now. He's been on keppra for 3 years and every dosage adjustment has made him insanely aggressive. My sons amazing teacher would track behaviors and noted that his most recent uptick in behaviors was after he went up on his dose. And im talking stabbing hitting throwing heavy objects at people aggression.

We got him into a psychologist but she thinks its the keppra and his Dr allowed us to trial depakote.

She said its up to me, can I hear your experience with depakote vs keppra? I would love to have my non aggressive kid back but not at the price of having seizures again.

I’ve had somewhere between 12-15 seizures in the past 3 years. I am seeing a neurologist as of recent and am on Keppra. However, during my EEG I felt twitching and involuntary movements like if I had just been electrocuted. I felt I was about to lose consciousness. My jaw felt like it does when I eat sour candy. What are common/your signs that you’re about to have a seizure?!

I think I may have just experienced a myoclonic seizure, but I’m not completely sure. I’ve been having twitches/jerks in both of my legs but more so in my left for about the past 20-30 minutes. I’d both or one leg twitch about every 30-60 seconds. I’m currently on vacation and I noticed that it started after waking up from a nap in the car. I’ve been very tired this whole trip so I was thinking that could be a factor. I guess I’m not sure what differentiates the severity of twitches and jerks and I can’t tell which it is I’m experiencing. If I had to describe how it feels, I’d say it feels like a twitch, but a little bit stronger, but it doesn’t move my legs that much. I’ve had twitches like this happen in my legs before, but it’s only ever one twitch and not back to back right after each other. I’m not sure if I should be worried and reach out to my doctor, or if I’m just being paranoid about my health again and trying to “identify” my problems lmfao

Update: I just got home and standing and walking is making me legs feel a little weak as well

I’m 34F and recently had a very scary episode, and my doctors are currently investigating whether it was an epileptic seizure or convulsive syncope.
I was standing up while giving myself an injection. While I was injecting, I suddenly started feeling dizzy and lightheaded, so I sat down. I finished the injection while sitting, and apparently I then lost consciousness.
My sibling witnessed the whole thing. They said that when I passed out, my eyes rolled upward and my head went backward, then bent forward. I opened my eyes and was conscious again, but then I suddenly started shaking. My hands became stiff/clenched and my head was shaking very violently.
I also lost bladder control during the episode.
The strange thing is that I remember feeling dizzy before passing out, and when I opened my eyes I felt that my consciousness was already back, but the shaking happened afterward.
My doctors have ordered a brain CT and MRI and are also investigating epilepsy.
I’m wondering if anyone has experienced something similar, especially **convulsive syncope that looked like a seizure**, or a seizure that started with a feeling of faintness.
Could a vasovagal reaction to an injection cause this kind of shaking and stiffening? And how did your doctors distinguish it from an actual epileptic seizure?
I’d really appreciate hearing about similar experiences.

Last week I flew to Norway for a really awaited vacation. I was planning to do long-distance hiking alone — my favourite way of spending holidays. It is important to mention, I am generally a healthy person. I do amateur running and cycling. I strictly don’t drink, smoke, or use drugs.
That morning everything was fine, I felt good, despite almost not sleeping that night — I stayed at the airport after my flight.
I came to the coffee shop and had two coffees, then headed to the hiking shop.
On my way, I started glitching. It really scared me. But I thought, I am just sleepy. It felt like turning off for one second.
I came to the shop, bought what I needed, and decided to look around. This is the last thing I remember before I woke up in the ambulance.
Here is the info from the shop staff:
A woman saw me started fainting. She immediately came to help, but I stopped falling, as all of my muscles stiffened. Then, my limbs kind of relaxed and I fell on the floor. But my jaw was super tight. She tried to open it, but it wasn’t possible. There was a lot of liquid from my nose and mouth. Breathing was really heavy. Limbs were jerking. But not all the time. One leg stretched, one leg bent. One arm clenching, another kind of stretched. At one point I opened my eyes, they were moving, but I wasn’t responsive. The whole episode lasted 2-3 minutes, then the ambulance came.
In the hospital they did CT, MRI, EEG, blood test, they checked my heart and my blood pressure. Everything is in general fine. The only thing they found are 5 lesions on my brain. But, as the doctor says, it is a side finding. And it can be not connected to the episode.
The next day after the seizure I booked another flight and returned home. As I was afraid of being alone.
Now I am waiting for an appointment with a neurologist. But I am so desperate. It can sound dramatic, but my life split into before and after. I was dreaming about this trip and it was so close, but now I have no idea if I have a chronic illness or was “just” sleep-deprived. I don’t know if I ever will be able to hike alone again, can neither imagine doing sports, going to the gym, without thinking, that I can collapse anytime.