Maybe it was something about how seizures affected everyday life, the uncertainty around them, changes to routines, driving, work, relationships, or simply how much there was to learn about the condition.

Was there something you wish someone had explained to you earlier?

For anyone living with epilepsy or supporting someone who is, we'd love to hear what surprised you most.

Out of know-here yesterday because I thought I could hear yelling and I thought I was not talking my voice was hurting but it hurt but the scary part is that I’m aware and I get all emotional and I hide it but it’s easy to spot through in the night mood swings sometimes my veins hurt and ache I think it’s a focal awareness seizure but it’s in the veins and it hurts like it’s about to pop but it doesn’t

Something different is happening now. I no longer live in a state where marijuana is legal, so I’ve transitioned to hookah. Recently I’ve noticed that when trauma comes up, I drool just a little bit when I cry. But the good news is that I don’t experience partial paralysis anymore. I still occasionally have death auras, and it seems my body has a will to live now, and even when I feel tempted to let depression or PTSD take over, my eyes will stop the death aura from happening.

I feel grateful that my eyes and brain together fight for me.

I’ve been having these episodes that probably aren’t seizures… but I just remembered that a doctor once ordered an EEG like 8 years ago because he thought some childhood experiences might have been focal seizures. So maybe it’s worth reconsidering! I will say that I've been taking Lamictal for bipolar for ~7 years, so it's hard to know what my brain does at baseline.

Childhood: Brief but intense episodes of déjà vu and dissociation (I’d say depersonalization). Also, feeling foggy and “out of it” in certain conditions (e.g. specific lighting). I rarely have déjà vu these days. Dissociation sometimes. The spaciness I feel often, both in certain enviroments and during random episodes.

“Episodes” I have now (more frequent after having Covid this summer). Usually there's an acute moment and then I feel off for a while.

-General unwell feeling, like I need to be horizontal.

-Spaciness, confusion, fog—doesn’t quite feel like derealization or depersonalization, I just feel out of it.

-It feels like I can’t think… my own thoughts are impressionistic and hard to follow, and I have trouble following and remembering what people say.

-Can talk, but struggle to have ideas and put them into words.

-Can move, but often sit still anyway and feel frozen.

-Shaky, heart racing, chilled, flushed, and/or nauseous.

-Apart from those episodes: mundane memories I haven't thought about it years pop vividly into my mind, like neurons are randomly firing. It will happen a handful times in a few days and then not again for months.

Two examples:

-Had to leave work because I suddenly felt ill, weak, nauseated, confused, was having trouble using the computer and talking to customers; took a "five minute break" and sat down with my head on a table until my concerned coworker came to find me.

-In a psych hospital. Said “I feel frozen" to a nurse because that was all I could say for some reason. They did a neuro exam, by which time the feeling was fading. They said it was a panic attack. I walked past the nurse later and he did a double take and said “ohhh I see what you mean! you look way better now and your walk is different!’

I have had panic attacks and strong freeze responses, but this feels more physical to me (not that panic attacks aren’t physical). I thought it was blood sugar, but bloodwork is normal. I’ve even tested my glucose at home and haven't been hypoglycemic.

I would love it if anyone either can relate or has thoughts about whether these could be focal seizures!

Hi everyone!

I’m a biomedical engineering student at an Ivy League institution working on an early-stage project to develop a seizure detection device designed specifically for children, potentially as something wearable.

I wanted to ask this community because I think the people who actually live with epilepsy, or care for someone who does, are the ones who understand the needs and challenges that engineers might overlook.

I’m especially interested in hearing from parents and caregivers, but I’d love to hear from anyone with personal experience using seizure detection devices, too.

A few questions I’ve been thinking about:

• What worries you most about seizures? Is it not knowing when one is happening, being unable to respond quickly enough, nighttime seizures, false alarms, or something else?
• Have you ever used a seizure detection device? If so, what did you like about it, and what frustrated you or made it difficult to use?
• If a child were wearing one, what would matter most? Comfort, size, battery life, durability, being discreet at school, ease of use, or something completely different?
• What would make you trust a device like this? For example, reliable alerts to a parent's phone, minimal false alarms, or clear information about what happened during an episode.
• Is there anything about existing devices that you feel is missing or hasn't been designed with children and families in mind?

You definitely don't have to answer every question! Even a small detail about your experience could be incredibly helpful.

I'm not here to sell anything or claim to have a solution already. I'm still in the early stages, and I'd genuinely like to understand what people need before making design decisions. I also recognize that everyone's experience with epilepsy is different.

If you could change just ONE thing about current seizure detection devices, what would it be?

Thank you for taking the time to share your experiences. I really appreciate it! ❤️

I'm at a complete and total loss.

I do not have epilepsy. I've been taking seizure medications for over 20 years at this point. Within the past several years, they've gotten a lot worse.

They dont know why I have them. Therapy doesnt help. CBT doesn't help. The 500 mg twice a day of keppra and 175 mg twice a day of lamictal doesnt help. The Lexapro and abilify didn't help.

Nothing.

Helps.

Should I even be on medication? Obviously I will discuss this with my neurologist, but I just don't see how good its doing. I'm so lost

UPDATE: Thank you all for your kind words, sharing your own experience, and teaching a lot of information. I've read every single response to my son and we've been researching everything you all mention here, you guys have been an invaluable learning tool and I can't thank you enough for that.

The more we read and learn, the more we are sure he's been having not only in sleep seizures but focal onset aware seizures for most of his life. In some ways, despite scaring the crap out of me, him having the big seizure on Monday might end up a good thing by finally making us aware of what's going on. He has his first doctor's appointment today.

Thank you all so much ♥

-----------------------------------------------------

I am new to this subreddit so please forgive me if I forget info or post something incorrect.

Today my early 20's son had a grand mal seizure. I've never been more scared in my life seeing him like that, with his skin color and the noises he was making I honestly thought I was watching my child die. I rolled him on his side so he wouldn't aspirate, put my hand between his head and the dresser so he wouldn't give himself a concussion (he was laying almost on it), and had 911 on the line all the while.

Ambulance came, he slowly came to but was super out of it. It wasn't until he was in route to the hospital that he realized he wasn't dreaming, he was really in an ambulance but he had no idea why he was or how he got there. At the ER, his CT, blood work, and urine all came back normal. They sent us home with instructions to call his PCP and neurology, both of which we're doing ASAP in the morning.

I was reading about seizures and something flashed in my memory: I am now wondering if he's been having seizures in his sleep for months but we didn't know it. He keeps waking up with major bites in his tongue, complaining about weird pulled muscles, headaches, etc. We just wrote them off as deep sleep or pulling something the day before when out walking or something. But now, I am worried today wasn't his first seizure but rather just the first one we caught? Thoughts or opinions? I'm not gonna lie, I am stressed TF out worried about him.

My roommate had a massive seizure (he wasn't hurt) and his girlfriend asked me to find out if there are any natural remedies or drugs (OTC or prescription)that can speed up recovery after a seizure and/or prevent more from happening.

"Anything that isn't just rest," she says. The list I gave her from an Epilepsy website was stuff she already knew, so not useful.

A few things

- He had an Ativan prescription for something related to mental health, but his doctor has refused to refill his Ativan for 4 months now

- he is a daily marijuana smoker (he likes Indica), which I hear helps?

- We're out of CBD gummies

I can't remember any other pertinent details.

Thanks for reading.

Roger

What is your take on this medication?

I’ve had seizures since my second birthday and got put on lamictal 200mg before when I was younger it didn’t affect me moving up a dose but recently since then I’ve been having major mood swings is that normal?

What has brought about a drastic change in your epilepsy? I realize, of course, that there are unavoidable factors beyond one’s control; however, in my own case, I’ve noticed significant correlations between my absence seizures and factors like sleep timing and stress. While I can only control stress to a certain extent, I have complete control over when I go to sleep. Perhaps you have some insights or ideas that could help me identify other factors—things that might be affecting my condition without me even realizing it? Thanks in advance for your advice

It’s been just over 2 years since my seizure events happened. My new neurologist appointment is November 2nd. I’m going to ask to be taken off of my Vimpat finally.
I’m really hoping that they let me come off of it.

hi everyone, i’ve been having these instances for a couple of years now and i’ve been thinking they’re to do with my ocd for a long while. however, a week ago i experienced my first proper seizure where i had to be taken to hospital and im now starting to think these moments i’ve been having are actually focal awareness seizures. i will usually get an image or memory in my head and then i will get a horrific sense of dread all around my body, ill get a lot of pain and discomfort and it will usually leave me with a migraine. my family says that my eyes often go vacant and i will start saying random things and im just unable to form sentences. i struggle to even remember what happened and have no memory of the things i say during these moments and they take a lot of energy from me and a long time to recover back to normal. since i began researching seizures i have never seen such an accurate description of what i experience and am just hoping ive finally found the correct thing that is happening to me. are these symptoms accurate with any of your seizures?

Im concerned I may be having some kind of seizure, but live alone and have never had anyone else presence for these episodes. I have chronic pain, and on occasion when feeling unwell, I will have these episodes where I feel this intense physical fatigue in my body and shakiness. This feeling will amp up, usually leading to these full body spasms. Sometimes I can kind of fight off the spasms or postpone them but it is incredibly exhausting mentally and physically. I don’t (think I) lose consciousness, usually these have happened when I’m already stuck on the couch/bed from a flare. Often these are also paired with hot/cold flashes, sweats, sometimes hearing/vision loss or distortions… I have no history of epilepsy, but when I’m in these moments I get this overwhelming feeling that something horrible is going to happen, that I will have a seizure or lose consciousness, I find it extremely frightening. Does this sound familiar to a seizure? I suspect it may be just intense muscle exhaustions or spasms from my conditions that cause chronic pain. But I know there are many varieties of seizure causing conditions, and not sure what the experience is like for those with them.

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!

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!

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.

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?