How do you guys stay hydrated? I’ve tried liquid IV and Gatoradelyte. Is there something I need to be drinking that I don’t know about? I over heat easy and notice that I don’t sweat unless I’ve had an electrolyte drink.
I feel like I was better off without it. I've been so depressed. I got fired from my job for having a seizure at work. After that I went on 500mg twice a day and got really depressed and tired. I've talked to my neurologist and she said as long as I'm not have seizures that's the most important thing. Now I have no job, no disability and have lost my girlfriend because she couldn't handle my depression. I don't know what to do anymore
That’s what a user in this community seems to think! Also, you won’t be poor if you invest in stocks!
I’m not upset with them, I think it’s comical that they’re disabled and have this mindset, I suppose. Assuming that because they are also epileptic, they can speak for every single person with the disability. “We’re all in the same boat.” We aren’t though, are we? While we all have the “when will the next one be?” thoughts, we are all experiencing different lives.
I can’t speak for anyone else that has epilepsy, and I wouldn’t want to. I can only speak about what I have personally experienced. At least I’m not an ableist who is upset about people being poor, I suppose. Just full of hate 🥰
I do. I've been staying indoors to prevent a sz from happening. Be careful you guys. I'm in northeast US so we had a bad heatwave the past 3 days, today is only in the upper 80's so it's not as bad. Plus we have a sea breeze so that's nice.
Stay cool and hydrated.
What happened yesterday was unlike anything I’ve ever experienced, and I’m honestly having a hard time processing it.
My timeline:
2020: First tonic-clonic (grand mal) seizure.
2021: Second tonic-clonic seizure and diagnosed with frontal lobe epilepsy.
I was seizure-free for almost 4 years. I was on Keppra at first, then switched to Depakote and did really well on it.
November 2024: Switched back to Keppra because Depakote was causing bad hand tremors.
March, May, and July 2025: Had breakthrough seizures after drinking alcohol. I completely stopped drinking after that, Vimpat was added to my Keppra, and I was almost one year seizure-free.
Yesterday, just 2 days before my one-year mark, I had what I was told was a focal seizure that spread into a tonic-clonic.
The part that’s really messing with me is that I remember some of it.
I remember the seizure coming on and trying to speak. I remember my boyfriend carrying me from outside to the couch. I remember him talking to me and trying to comfort me. I remember trying so hard to answer him, but I couldn’t speak or move. I could hear myself making noises, and I remember feeling like I couldn’t breathe. I genuinely thought I was dying.
Then everything went black.
The next thing I remember is waking up in a hospital bed. I was told I had another tonic-clonic seizure in the ambulance and they had to give me rescue medication. I don’t remember any of that.
I also didn’t bite my tongue or lose control of my bladder, which is different from some of my previous seizures.
This was, without a doubt, the most terrifying seizure I’ve ever had. I can’t stop replaying it in my head, especially the part where I was aware but trapped in my body.
Has anyone else remembered part of a tonic-clonic seizure or been aware during the beginning of one? Even if your experience wasn’t exactly the same, I’d really appreciate hearing it. I could really use some reassurance that I’m not alone.
Does anyone else have experienced uncontrolled crying and sobbing after the seizure ? Sometimes after a big seizure i guess , i am crying a lot , cant Control it. Have depression and anxiety as well. What could it mean ?
Hello everyone, my name is max. I am 27 and in September I started having tonic clonic seizures and looking back was definitely having undiagnosed absence seizures. After a few months of testing and more seizures I was diagnosed with adult onset epilepsy. It was looking to me that I’d never be able to drive again each seizure the 6 months would reset. I am so thankful my doctor found a medication that works for me and officially today i am 6 months seizure free. I took a few laps around my block and it all came back instantly. Can’t wait to drive to work tomorrow and no longer have to relay on my family for a ride.
Sorry, this is a long one..
I honestly don’t even know what to do anymore. I am so tired of fighting my own body and a corporate system that doesn't give a shit about us.
I’m currently staring at my work schedule for next week and it’s basically blank. They only scheduled me Monday through Thursday, and nothing else for the rest of the month. My manager has been completely ghosting me(after I sent him the doctor’s note). This is the exact same corporate tactic I've seen before—they create a tiny buffer so they can transition you out, and then they let you go. If they fire me, this will be the THIRD job I’ve lost this year because of this fucking disease.
All of this started because I ended up in the ER recently. I had 8 seizures in the span of 2 days, hit my head during the seizure, and had to take a week off. Now my doctor has me on a new medications; Lacosamide and Clobazam, the medication whiplash combined with the sheer stress has my body feeling awful today. I feel like I'm on the verge of another focal seizure right now just from the anxiety.
On top of the fear of losing my income, the ER bill just hit and it is hefty. I am completely drowning in financial stress.
To make matters worse, my best friend is getting married and I’m literally her Maid of Honor. Her bachelorette party is coming up, but between this massive medical debt, potentially losing my job, and the fact that I safely cannot fly alone right now, I don’t think I can go (neurologist said if I’m traveling, to have someone with me) I am absolutely devastated. The thought of having to break her heart and tell her I can’t make it is making me sick to my stomach.
I feel so incredibly isolated. People around me in my offline life keep telling me "don't worry, it'll be fine," which feels like a total slap in the face. It’s not fine. My livelihood is hanging by a thread, my health is deteriorating, and nobody seems to get the psychological torture of just waiting for the axe to drop on Monday morning.
I just needed to put this somewhere where people actually understand. How do you guys cope when everything crashes down at once? Because right now, I just feel completely trapped.
Air travel is a part of my job about 3 to 5 times per year with one international trip a year. My neuro was really really emphatic about me needing a travel companion especially for the international trips but I hate making a big deal about my epilepsy to anyone especially coworkers. Anyway. Looking for others’ experiences here. My seizures are mostly well controlled with meds but I am on the edge of failing my first med if I have any other breakthroughs. How would you broach this subject with coworkers without coming across as the needy one or a burden?
I was diagnosed with epilepsy 2 and a half years ago. I had a frontal lobe brain tumor and had my first tonic clonic seizure. I had my tumor removed and thought it would stop the seizures but no. For a while my seizures were controlled for the most part. I would have a seizure maybe every 3 months. But within the past year, I’ve been having 2 seizures a month. I’m on 1500 mg of Keppra & 200 mg of vimpat.
I have a lot of tonic clonic seizures during sleep. I will wake up confused on my floor after rolling off my bed. My last seizure my seizure heard me fall out of bed and rolled me on my side on the floor. I miss being able to sleep without being afraid if I’m going to wake up from a seizure. I miss not having to worry about skipping medication. I miss my parents and siblings not having to worry about me constantly. I miss driving without worrying I might have a seizure. I miss not worrying about if I’m going to have a seizure at the gym, work, or out in public.
I know things can be worse. But I truly miss life before all of this.
I have only ever had tonic clonic seizures
I know most of the answers will be "driving", and I understand that because most, but for me-it's travelling.
My loved ones don't allow me to do that, unless there's a companion (which is not there most of the times because of work)- and even there you don't do adventitious activities.
I went to one of the beautiful spots in India- Ladakh (search about it), and even there I couldn't ride a bike or go on a hike to Pangong Lake because I'm not allowed to.
I love traveling solo- and I hate that I can't do it anymore.
Hello everyone. My boyfriend was recently diagnosed with epilepsy after experiencing his first two tonic clonic seizures. After his first seizure, he laid there, not convulsing anymore and it looked like he was asleep. It took him a minute or two to wake up. Is that period of time where he isn't awake yet part of the seizure? And when a doctor asks how long the seizure lasted, do I include the time he isn't convulsing before he's awake?
Second, how do I handle his postictal state while keeping him safe? When he woke up, naturally, he was very scared/disoriented/argumentative. Almost aggressive. His seizures are well controlled now but I still am unsure of how to handle his postictal state. Should I be at home if he had another TC, would it be wise to suggest an activity he enjoys (like going for a walk, cuddling on the couch, watching a comfort show)? What if we weren't home? For example, at the store or at a park? Would I just walk around with him, explain what happened, and do my best to keep him safe?
Lastly, I sleep like a rock. A gun could go off in our bedroom and it wouldn't wake me up. I have been struggling with guilt surrounding that, especially now knowing that the risk of SUDEP exists. He has a galaxy watch that tracks his heart rate and sleep, which brings me a little bit of comfort but I still worry. Should him and I discuss a camera for our bedroom?
Thanks for taking the time to read this if you got this far. This is all very new to the both of us; I just want to be as supportive (and as prepared!) as possible without driving myself wild with overthinking.
Why is photosensitivity THE epilepsy stereotype? I know that it can cause seizures, but it's in the minority? When I tell people I have epilepsy a common reaction is to jump to photosensitivity etc (when my trigger is probably stress). But yeah, why is photosensitivity the only type of trigger in the public consciousness?
Just a message of support to everyone. I see you! I feel like epilepsy is often overlooked and its just so fucking hard. It's isolating, it restricts your life in so many ways. It's anxiety-inducing for many of us in situations that most wouldn't think twice about, and perhaps take for granted. I love the support and community of this group as i don't know anyone in real life with epilepsy. It sometimes takes a lot just to get through the day. Im proud of you all - you're doing great - and Im sorry you have to put up with this shit. You've got this!
(I would love to cheer someone up that needs it - I draw animals and would love to a freebie for someone. cant add my link as no self promo but if you comment something about your pet, maybe i can choose one to do and message you - not sure if you're allowed images in comments!)
Really feeling some kinda way. I'm(M34) 2 years seizure free on Tuesday and it just feels silly to even acknowledge it much less celebrate. I had 10-20 focal unaware seizures daily for 5 years and I know it was bad, I don't remember a lot of it but looking at photos of myself and reading my journals it was clear it was bad. So I understand how fortunate I am to have made it 2years free but it just feels dumb. Partly because everyone around me has been so normalized to me not having them that I'm the only one who even thinks about it anymore. I don't necessarily need constant tending to in regards to it but sometimes I need to remind people it happened(funny since I don't remember half the past decade) idk. The fallout from the seizures has been immensely difficult to process, the doctors, the fear, the unknown, long term prospects. Its all a lot, but I supoose I hide the weight of it all well so people think I'm the old me, but I'm not, many parts of who I was are gone. . . . .Part of me wants to just treat myself to all my favorite things and activities for my anniversary but I just feel like its self indulgent? I feel like I shouldn't? I also just can't shake that feeling that the other shoe is about to drop and I'll start seizing again.
I don't know how to feel about it.
What’s your opinion with getting high? Have you guys been fine?
Hey yall!
I (31F) started having TCs for the time in my life back in Feb, I had another in April and 4 back to back on July 3rd.
The common link? Fast food chicken nuggets within 48hrs before. Every. Time.
That’s crazy right?? Anyone else see a similar pattern?
First seizure to last more than 5 minutes & now I'm in the damned ER via ambulance. I hate hospitals...
Newly diagnosed. My family and I are in our annual 4th of July camping trip and I just had a seizure in front of everyone.
My nephew and nieces all just saw me have a seizure for the first time and they are understandably not handling too well.
They think I’m dying and the youngest two are afraid it’s going to happen to them.
I’m not overly concerned for the tons of adults that saw(first time in public) but I’m having a hard time with the littles.
They’re practically my world!
Hi could i go to the gym with epilepsy as last time i went i overheated and nearly had fit but i don’t know if i should give it another go or not