I have two very distinct feelings when I have seizures.

I either still feel conscious and connected or I wake up with little to no clue about what happened.
I very rarely have those seizures though. The times I HAVE had seizures where I lose all control of myself, I stop breathing completely, I violently shake or start screaming happen so rarely it’s never been caught on an EEG

I keep explaining to my neurologist that not all of my seizures for PNES experiences/symptoms, and I don’t think he believes me.

It’s been half a year of me having unsuccessful EEGs after unsuccessful EEGs (about three now) and it’s so irritating because each time my neurologist states there’s nothing with this ‘I told you so’ cockiness.

I don’t know what to do. It’s so irritating. I feel so helpless.

Had a pretty bad cluster of seizures, leaving me with Todd’s paralysis and loss of speech (normal for my seizures) and just found out I can meow perfectly fine even when I can’t form a simple yes or no. Still unsure if my seizures are epilepsy or not.

I have a strange question...but first a small back story. I've had seizures for ~17 years - grand mal. I started when I was pregnant with my second child and only take medicine (Keppra) when I have an aura. My question is...when you are experiencing an aura or lead up to a seizure - do you "ride it out" so to speak or do you immediately go into prevention mode? Personally, my aura is almost like a high for me. I will take medicine to prevent the actual seizure but I have waited too long in the past and still had a seizure. Just curious if I'm the only nut job lol

Im making this post as Iv just started Carbamazepine (literally last night). I am taking it for Temporal lobe epilepsy. I have sat through many seizures and am able to manage myself quite well.

Im not a huge drinker but do like to get drunk or have a few here and there. I have plans this week and obviously dont want to get drunk on it as iv just started the medication but just want to have a few maybe 4-5 max. Is this safe? I want to be sure that im not going to put myself into a medical emergency. What are everyone’s experiences/opinions with this?

I posted not too long ago that my almost 4 year old has been experiencing some serious Keppra rage. They just switched her to Oxcarbazepine. Has anyone made this switch before? Has it helped? TIA!

I don’t know if I’m just over analyzing myself, or what. I had a t/c 2 days ago, definitely hit my head hard, seizure lasted over 3 minutes, I’ll spare anymore details unless needed. Basically I’m wondering if anyone else has kinda felt cognitively .. slower, for lack of a better term, after each t/c. I don’t know. After this one I just feel like mentally I’m a little less on my feet. Fuckin up at work, kinda not talking too much to people cause I feel like I’m overthinking the conversations I do have. Yea.. I don’t know is this something that’s even possible or am I being paranoid.

So the neurologist at my hospital told me that the reason I had 4 seizures In a day and 1 the next was due to the combination of ECT and the 5-6 medications I was on. He said the seizure meds should prevent it from happening again and that they did some test on me and they all came back negative (which is good, not being ungrateful) but has anyone else been told everything is good and later that’s not the case? I just want to know if there is someone else that’s experienced this.

Also I haven’t seen the epilepsy doctor yet, won’t see him until May of next year. Unless I move up on the waitlist.

Thanks for reading!

This could be completely normal, and im over anxious, but I woke up at 3am with no recollection of ever falling asleep and a chunk bitten out of my lip (my lip is now swollen and aching). My last memory is me just laying in my bed about to grab my phone and I dont remember feeling tired or sleepy or anything.

I dunno, fucked up my night plans with my gf though

If anyone has any insight please lmk 🙏

No prior medical history except substance abuse related things

I have a hard time putting into words the state of mind and how I physically perceive the world when I’m postictal. Everything has such a distinct, foreign, and distorted sense to it. Of course there’s much of the the time completely unaccounted for in my memory, but the parts I can recall give me chills when I put myself back in my own shoes. I don’t know why I’m so afraid of that feeling, or if fear is even the word really. But there’s such a strong connection to the shock, confusion, fear. Not being able to recognize faces, my own name, not understanding why I don’t feel good or what’s happening, but understanding that I am the cause of the fear, that I’m the center of concern. It’s so increidbly scary to see all of these strangers be so concerned and all the while have no idea who you even are. I’ve tried to flat out convince people I haven’t had a seizure while being on the ground bleeding, unknowing that they were holding my head from jamming into the ground for 5 minutes, and I’ve been so lucky to have such kind people around in those times. I know it’s nothing I can do, and just a wild hare reaction, and of course nothing I should feel bad for, but i do feel guilt in a way for putting people in that position, and I’m so immensely grateful for them trying to keep me calm and feeling safe. Depending on your perspective, I’ve had the lucky, or unlucky, opportunity to have most of my seizures caught on camera. Seeing the full weight of what happens to my brain and body, the ripple effect of what happens to those around me, and having no real idea why any of this happens in the first place is something I’ve been struggling with. I think there’s something metaphorical about how the “scariest” part of seizures is the part we have no memory of, we just wake up to the aftermath of it all. But that 15-30 minutes of just really having no stable sense of self/identity is something that sticks with me constantly.
I wish there was some tangible use to me having those moments documented on video, but unfortunately there’s just so much unknown about the condition we all have found community over, it doesn’t even feel like that’s much use. For what it’s worth, I’m really so grateful for the opportunity to read through everyone’s posts here, it makes me feel less alone ❤️

I’ve had focal awareness seizures since 2023. I’m med resistant and tried Keppra, lamictal, Aptiom, zonegran you name it but my seizures stay bad even after upping the doses.

I’m at my wits end trying to work 40hrs and maintain a normal life but it’s becoming challenging. I’m stressing about having seizures and when I’ll have them or if I’ll be able to make it to work. I don’t even have any time left and have been out for two surgeries this year already

I’m Pennsylvania based. Is there any assistance I can receive?

I'm pretty sure l've been having a bunch of focal aware seizures throughout the evening/night and just had one that was way worse than the other ones.
My mom is not concerned at all and said to just relax for the night.
To those of you with them, should I be concerned?
At what point does it become important to go to the ER?
I don't know much about focal seizures, I just recently was told I could be having them. When I look it up it says that focal seizures aren't dangerous or a big deal but it feels bad to maybe having a bunch within a few hours and it get worse.
Am I overreacting?

My cousin is autistic and he’s 18 lately he’s been having seizures and we do not know what’s triggering it. The thing is we can’t get him any help because his mother passed away six years ago and his father is in jail. We don’t know his Social Security number and we don’t have any of his documents so we don’t know how to get him a doctor and get help. Today he woke up with a swollen and black eye he also could not talk out of his mouth very well because every single time he has a seizure he bites his tongue really hard and blood comes out and we didn’t know he had a seizure until hours later when we saw blood on the floor because on the same day we had a power outage. He has an older brother who is nonverbal autistic who also gets seizures, but his were never this bad and my mother was able to adopt his older brother because he has a different dad than the 18 year-old cousin and my 22 year-old cousin who has autism his father, gave him away easily because he never even wanted him. Is there a way to get him an appointment without documentation?

I was sitting out with my friends in hostel and I suddenly felt my aura I.e. visual impairment
I rushed to my room and my Roomate was there. My visual aura was increasing a little however the same goes for my migraine so idk whether it was a seizure or migraine attack however I felt my eyes twitching and head turning(like my TC)
(REST OF THE STORY TOLD BY MY ROOMATE I HAVE NO MEMORY OF ANY OF THIS)
I woke up and called my mother and talked to her ON VID CALL
I seemed tipsy she says… was saying gibberish.
Then I slept… woke up and insisted I want to talk to my friends and CALLED him to come near my block and went to meet him till his block and HUGGED AND DID IDK WHAT even said “look at me na” BRO NO WAY

PLS GUYS HELP ME WAS IT SEIZURE OR MIGRAINE AND WHY THIS MEMORY LOSS AND WHAT HAPPENED

Hello all,
My daughter was diagnosed with childhood absent seizures and has only had three. She is going to be 4 in April. After the second seizure, she was prescribed Keppra and… Oye.

She gets triggered so easily. Just now she was all smiles, getting excited for lunch then asked me to eat with her. I told her I had to put her sister down for a nap and she’s been in her room for over a half an hour pounding on the floor, growling, yelling and crying… this happens so much and I’m truly trying.

One of her moves is also banging her head against walls, floors, etc. I asked her neurologist about that and he said she can’t harm herself doing it. That he even gets kids with bruises and he’s not concerned. He told me to just not acknowledge it. She doesn’t do it hard but it’s not fun.

Thankfully her “2 year seizure free” is coming up on New Years. So as soon as I can, I’m weaning her off.

For those familiar with Keppra, does this all sound familiar? It’s hard to tell which part is her being a toddler, and which is the meds. I read others saying that stress is a trigger too. Her dad is military and is currently away for training. He does his best to make the 4 hour trip back home on the weekends but I know she’s being affected. Ugh, I’m just lost and I really want to ease her Keppra anger. Just not sure if it’s possible 😔

I am going for my first concert today and I have epilepsy but my major trigger is fatigue
Hoping all goes well.

I had 6 tonic clonic seizures and ended up in hospital 2 years ago, and they diagnosed me with epilepsy. About a month later I had another tonic clonic. It’s been 2 years and I’m now medicated. Sometimes I zone out and my limbs twitch, or I get this intense feeling of being overwhelmed, I’m not sure sometimes if I’m day dreaming or having a focal aware seizure or absent seizure. I had a really strong aura the other day. Which was exactly the same as when I was having my bad tonic clinics 2 years ago. But my partner calmed me down and nothing happened after, am I still having seizures

23F UK, never experienced anything like this before

Last night, I went out with some friends and after drinking 3 beers and a joint, I went to bed as usual at midnight.
I woke up around 4am feeling very hot and dehydrated. I went downstairs to the kitchen and stood at the sink to fill my bottle, but I remember suddenly feeling a very ‘hopeless’ and couldn’t figure out how to drink it.
Suddenly, I thought I was lying back in bed but the mattress has become extremely hard. I realised I had somehow fallen to the ground, though I didn’t remember actually falling. I tried to sit up but suddenly I could feel my head repeatedly hitting itself against the ground (?) it’s very hard to explain, I could feel my head slamming against the floor of my kitchen. It was like I was experiencing small lapses in time between these things happening.

When the slamming stopped, I managed to sit up and put my head between my knees as I sat on the floor. My head hurt so bad, the sides of my face felt bruised, my jaw hurt and I had the worst pounding headache of my life. I debated calling an 111 for a while, because I didn’t want to go to sleep in case I was concussed, but I live my parents and didn’t want them asking any questions.

I managed to crawl up the stairs and get back to my bed and eventually slept. This morning, my head still hurts but nowhere near as bad a last night and my jaw is sore.

Does anyone have any idea as to what happened to me?

It always starts the same way. My right arm goes numb, I can’t focus or think at all and get a weird feeling in my head and get a immense pending doom feeling, my heart starts racing so insanely fast OR I can’t feel it at all, my vision starts to go and I blink a lot to try and make it stop, i start dripping sweat, then I nod off for a quick second and go back to normal. I’ve had this happen about 8 times. This past one that I’ve had, about 10-20 minutes after it happened I couldn’t read. I don’t know how to describe it but it felt like the letters and words just wouldn’t process or translate into my head. I’ve gone to a neurologist and she thinks it’s focal seizures and I will be getting a at home 3 day eeg test done. However I don’t think it will be very effective because my most recent episode was one week ago and they are usually 1-3 months apart. Most of my episodes happen when I’m driving (I have time to pull over onto a street or gas station etc) however I had a cluster of 4 back to back when I was just sitting in bed watching a movie relaxing. My neurologist is so booked that I won’t be seeing her until February.

When I had the cluster of 4 at home I got worried and called an ambulance however they didn’t come until 30 minutes after my last episode and I was already back to normal by then however my blood pressure was still in the 170s. I don’t know if that is useful at all lol. I went to a cardiologist and had a heart monitor on for a week and sonograms etc and my heart is perfectly fine. I also had a mri bran scan with & without contrast which also came back 100% perfect. I’m worried because I know this isn’t normal…

Yesterday, my 7-year-old son had his first-ever seizure while we were at Walmart. It happened completely out of nowhere. His whole body went stiff and contorted like his body was experiencing a massive cramp, and he collapsed, hitting his head pretty hard on the way down.

Paramedics took him to the children's hospital, where he was diagnosed with a concussion from the fall. Thankfully, his CT scan came back normal, but we still have no idea what caused the seizure.

We're now waiting to hear from neurology to arrange further testing. In the meantime, I'm struggling with the thought of sending him back to school. He's still been complaining of headaches on and off, and I'm constantly worried about it happening again, especially when I'm not there.

I've never felt so helpless or scared as I did watching that happen to him. I know I can't keep him by my side forever, but the thought of another seizure happening without any warning absolutely terrifies me.

I guess I'm just struggling with the uncertainty of it all and needed somewhere to share with people who might understand.

I was diagnosed with a seizure disorder earlier this year. I was put on keppra and its working wonderfully. I feel more alert, i havent had any passing out issues I sleep better, I stopped grinding my teeth in my sleep, I dont experience tics, and everyone comments how much "brighter" I seem.

However lately I was wondering how common is it to be diagnosed without a test. I was in the hospital over a year ago for fainting. While I was there the cardiologist said it was a neurologist issue, and the neurologist said it was a cardiologist issue. Absolutely no answers were given. Both doctors claimed the way I fainted didnt make sense. Both claimed that because I slowly faded out that i should check with the other.

Obviously I was frustrated, but continued with life. Finally was referred to a neurologist by my cardiologist after I came in with 2 different sized pupils.

The first visit with the neurologist and he immediately diagnosed me. I was happy to have an answer, but I was shocked that he didnt give me any sort of test. He just asked what happened during my fainting spells and gave me the diagnosis. Obviously I feel a million times better on medication, but it still feels weird that it was so easy(?).

Anyone else have a similar situation?

I’m on Topamax 50 mg I don’t wanna increase the dosage due to horrific carpet burning sensation pain during first dose titration from 25 mg to 50 mg. I’m still having daily breakthrough, simple partial focal seizures. Here is my entire story if you’re interested any alternatives I’m open to procedures and even surgery. Please read in full 💕

Here’s the revised version, with the timeline made much clearer. I also included your acknowledgment that you went to a different doctor because you felt your psychiatric treatment wasn’t working, and that you disclosed your existing medications to the PCP before Seroquel was introduced.
I want to share my experience with Seroquel (quetiapine) 50 mg, because what happened to me after discontinuing it has completely changed my life and how I view psychiatric medications.
To understand my story, you need to understand my medication history.
I had already been taking Cymbalta (duloxetine) 60 mg daily since 2021 to manage fibromyalgia. I had also been taking stimulant medication for my ADHD since 2024, including Vyvanse (lisdexamfetamine). These medications were not new to my body.
I was also a frequent caffeine consumer.
Seroquel was the new medication introduced into an already established medication regimen.
I also want to take accountability for something. At the time, I felt that my psychiatric treatment wasn’t working the way I needed it to. Rather than confronting that directly with my psychiatrist, I went behind my psychiatrist’s back and sought help from another doctor, who was a primary care provider.
I explained to this PCP what medications I was already taking, including Cymbalta and my ADHD medication. Despite knowing my existing medication regimen, he introduced Seroquel 50 mg nightly for sleep.
I took Seroquel for approximately seven months. During that period, I was still taking Cymbalta and Vyvanse, consuming caffeine regularly, and sometimes alternating Seroquel with trazodone for sleep.
This is where I think the complexity of my situation becomes especially important.
Seroquel affects several neurotransmitter systems, including dopamine and serotonin receptors. Cymbalta influences serotonin and norepinephrine signaling. Vyvanse increases dopamine and norepinephrine activity, and caffeine stimulates the central nervous system.
These substances do not all work the same way, but they can influence overlapping neurological systems.
Eventually, Seroquel began causing chronic dry-eye problems that became difficult for me to tolerate. After approximately seven months, I was told that because I was taking only 50 mg, I could discontinue it without tapering.
So I stopped Seroquel abruptly in June 2026.
What happened afterward was terrifying.
I began experiencing episodes of severe brain fog, confusion, expressive aphasia, difficulty speaking and finding words, memory problems, palpitations, blood-pressure spikes, and neurological episodes that sometimes resembled symptoms of a stroke.
These weren’t simply the anxiety symptoms I had experienced in the past. Something felt profoundly different.
My symptoms became severe enough that I underwent emergency neurological evaluations, including a CT scan, CTA of my head and neck, and eventually a brain MRI. Fortunately, these did not reveal an acute structural brain abnormality.
But the episodes continued.
What concerns me is that Seroquel was abruptly removed from my nervous system while Cymbalta, Vyvanse, and caffeine were still influencing it.
The brain and nervous system can adapt to medications taken over time. When a medication that affects multiple neurotransmitter receptors is suddenly removed, withdrawal symptoms and changes in nervous-system signaling can occur.
Meanwhile, the other medications and stimulants are still producing their own effects.
I am not claiming that I can prove permanent receptor damage or that every symptom was caused by one specific chemical imbalance. But I believe the combination of medications, followed by abruptly discontinuing Seroquel, is an extremely important part of what happened to me.
Eventually, I was formally diagnosed with focal seizures.
My neurologist attributed their development to the combination of Seroquel, Vyvanse, and Cymbalta, along with the circumstances surrounding Seroquel discontinuation.
I now take Topamax (topiramate) 50 mg, which has significantly improved my focal seizure control, cognitive clarity, and neurological symptoms.
However, I’ve also discovered that caffeine, ADHD stimulants, and certain other medications can trigger breakthrough episodes, meaning I’ve had to make substantial changes to my everyday life.
What makes this experience particularly difficult is that I had tolerated Cymbalta for years before Seroquel was introduced. My ADHD medication was also part of my treatment before Seroquel entered the picture.
Seroquel was the new variable, and abruptly discontinuing it was followed by a dramatic change in my neurological health.
I should have been more transparent with my psychiatrist about my dissatisfaction with treatment instead of seeking another prescriber without coordinating my care. Because now I have suffered since June 21 of 2025 to this day of having simple partial/focal seats on this every day the only thing that truly breaks them up is benzodiazepines which I don’t wanna get hooked on.
But I also believe that when a provider introduces a new psychiatric medication, especially alongside other medications affecting the central nervous system, patients deserve a thorough explanation of the risks, potential interactions, withdrawal effects, and discontinuation process.
Seroquel is an antipsychotic. It is not FDA-approved specifically for insomnia!!!!!
I wish I had better understood what I was taking, how it interacted with my existing medications, but I know it’s completely my fault because now I have potentially a permanent brain disorder because I was too scared to say I don’t like this but not this time with the neurologist. I have my appointment next week and I’m so sick and tired of the constant suffering. I have horrific roving of the eyes. Sometimes I still have expressive aphasia and I still will have a very spaced out feeling almost like a trans like feeling, or like being high or something. Has anyone ever had instances where the anti-seizure medication’s just weren’t enough and they had to do other treatment options or a different drug class?? Advice #Neurology #MentalHealthAwareness

I have a cousin who has had issues with seizures for years. This week her mother was arrested for drugs and not sure what she actually did but she also got arrested. While in custody she started having a seizure and they weren’t paying attention. Second shift at the jail found her and she is now brain dead and unresponsive. I don’t remember her exact age but I think around 31 or so. She will be pulled from life support on Sunday. She is in Georgia so the GBI is now investigating. No one knows how long she was having the seizure but it was long enough to leave her brain dead. My family is devastated! My uncle who was her father died on 3/3/24 so my cousin is now losing his father and sister in 2 1/2 years.

Hi everyone,
I’m considering discussing a switch from sodium valproate to **Keppra (levetiracetam)** with my neurologist, and I’d really like to hear from people who have had a positive experience with it.
I’ve read so many frightening stories, especially about anger and mood changes, that I’m feeling pretty anxious. I’m not looking for anyone to sugarcoat their experience, but hearing from people who are doing well on it would genuinely help.

**A little background**
I have generalized epilepsy, including absence seizures, as well as panic disorder and severe insomnia involving both difficulty falling asleep and staying asleep.
I previously had a serious seizure-related fall that fractured my sacrum and injured my right shoulder, including a fracture and dislocation. I needed surgery and rehabilitation. That experience makes maintaining seizure control especially important to me.
I’m currently completely seizure-free on my treatment, which I’m very grateful for. Unfortunately, the side effects have become difficult to live with.

**My current medications**
I’m in Austria, so I’ve included generic names and other familiar brand names:

**-) Sodium valproate, prolonged-release (Convulex retard; sodium valproate is also sold as Epilim):** 750 mg in the morning and 750 mg in the evening for epilepsy.

**-) Clonazepam (Rivotril / Klonopin):** 0.5 mg in the morning and 1 mg in the evening for epilepsy.

**-) Paroxetine (Paxil / Seroxat):** 20 mg in the morning for panic disorder.

**-) Daridorexant (Quviviq):** every evening for difficulty falling asleep and staying asleep.

**-) Quetiapine (Quetialan / Seroquel):** 50 mg in the evening to help me fall asleep.

**-) Tirzepatide (Mounjaro; also marketed as Zepbound in the US):** 15 mg once weekly for weight management.

For readers familiar with **Depakote (divalproex sodium)**, that’s a related valproate medication, but a different formulation from the sodium valproate I take.

**Why I’m considering a change**
I’ve experienced substantial weight gain that I associate with valproate, paroxetine and quetiapine, as well as a significant tremor from valproate. I’m now taking Mounjaro to manage the weight gain, but I have to pay for it myself, and the ongoing cost is becoming a real burden.
I have considered reducing doses. However, my impression is that my doctors may be reluctant to change a regimen that is keeping me completely seizure-free. Any switch would be something to discuss and plan with my neurologist.

**If Keppra has worked well for you, I’d love to hear your story.**

In particular:

\-) Has it controlled your seizures without major problems with mood, anger or anxiety?

\-) If you had initial side effects, did they settle down?

\-) If you switched from valproate, did your tremor or weight situation improve?

\-) If you already had anxiety or panic disorder, how did you get on with it?

\-) If you switched from another epilepsy medication to Keppra, especially from valproate, how did the transition go? Did you stay seizure-free throughout, and did you experience any temporary side effects while tapering one medication and introducing the other?

Honest accounts that include side effects are absolutely welcome. I’m not dismissing anyone’s difficult experience—I’d just really appreciate a thread focused mainly on positive or manageable experiences.

Even “I take it, it works, and I feel like myself” would be reassuring to hear. Thank you.

———
Side note:

Unfortunately Lamictal didnt really work for me. My neurologist said that lamictal is too weak for my kind of epilepsy… He said either just Keppra or Valproate (Convulex) combined with Rivotril…. But I‘m wondering if Lamictal would work if I took it with Rivotril..? Maybe I should ask him. Btw. He is not any neurologist, he is THE expert in Epilepsy in whole Austria. He is a Professor, he teaches all the med Students and all the other doctors and even other well-known neurologist I went to sent me straight to him…. So im kinda stuck with him

Hey everyone, new to this sub. I had my first seizure two years ago and my second one two days ago. After my second one, I was prescribed Keppra (30 day supply) while I wait to see a neurologist, as they still don't know the reason behind my seizure. For my first seizure, I had low sodium and for this one, I had low potassium, which isn't typically a major cause of seizure. The problem is next week, I am going to Columbia for a study abroad trip for a week. I know the altitude there can sometimes cause issues, so was wondering if I would still be okay and if that has any impact on likelihood of having a seizure. Also, would I be okay to wait until I see my neurologist before starting Keppra? I know the medication has side effects, and I suspect that poor nutrition may be the cause of the two seizures I have had.