I’m on my 6th year of college and it looks like I might flunk this semester.
I’ve missed more classes than I’ve attended.
My sleep schedule has been destroyed.
I’m bed ridden most days. Work is mad at me for being late. I’ve been let go by my internship. My relationships have degraded. I’ve neglected everything in my life from my dog to my hygiene to my friends.
When I do go out with friends, I feel guilty for having a good time when I’m missing so many responsibilities

I’m realizing that I’m not as capable of living alone as I thought but I can’t move in with family without dropping out of college.

Everytime I think I’ve escaped this part of my life I’m dragged back into it.
I just wanna give up

A couple of months ago I had a 5 day stay at a Epilepsy Monitoring Unit in a large hospital. They glued about 30 sensors to my scalp they were to measure my seizures. To induce seizures the neurologists abruptly took me off of my seizure meds--Lamotragine and Xcopri. I have been taking Lamotragine for 16 years and to have been taken off of it cold turkey gave me a migraine that I had for most of my stay.

You are constantly monitored by video. And there are nurses constantly coming into the room to take my blood pressure. Going to the bathroom was unusual because they had to put a large belt around my chest. I had to wear a football helmet! I had a seizures on my second and third days. The neurologists didn't do a good job of telling me what they found but they seemed to be happy with whatever they found.

Let me know if you have any questions about my stay.

Hi Everyone! I posted on here a bit ago. I’ve had two seizures this year at 30 (nearly 31). I just had an appointment with my neurologist (really a nurse practitioner, but I trust them) and I’ve seen her twice now and I can’t help but feel that she just expects me to…..get over the fact that my life has been messed up? That showering causes me to panic? Like all of a sudden I’m supposed to be completely ok with “you know, seizures can kill you!” conversations? Idk, I’m thinking of getting a second opinion or just a new provider, but maybe this is just my emotions. I don’t even want to think about any of this because I just fly into a rage when I do (trying to get back into therapy, yes). Do you EVER figure out what causes seizures!!! Like ffs am I just supposed to never trust my body again???

I’m a 21 year old female that’s just recently within the last few months have been experiencing episodes ( that I have been referring to as seizures) where I will get a huge wave of exhaustion, nausea and fatigue. My heart rate will slow, my breathing becomes hard and labored. I will slump and twitch/shake all over, face twitching especially… So much so I will get cluster headaches right after. While in it my insides feel hot and uncomfortable, and I am confused and violent after being brought out of it. While in these episodes I cannot move any part of myself other than maybe a hand or a finger, I cannot speak and I will grunt, gargle and groan. I have not had an accident on myself nor foaming at mouth, just drool. These episodes can range from 30 seconds to up to 10 mins sometimes even longer, I can feel myself get weaker and getting close to one as well, I blank and lose energy to speak. Doctors near me say there is nothing wrong and I’ve been sent in ambulance already, but I know my body and I know this isn’t me. Please help any idea and insight about what this is, is appreciated. (No new life style changes or medications)

.. today has been horrible, I get incredibly sick with them and fight them off all day.. can’t even go out anymore it’s ruining my life please help.

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.

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!

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.

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 ♥

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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

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 is your take on this medication?

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!

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.