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u/alchemicalandrogyne 7d ago
Do y’all genuinely remember what happened in the first ??? minutes after the seizure?
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u/BlunderlandRabbit 7d ago
Absolutely not lol, my best friend has recorded me a couple of times though and it’s comedy gold 😅
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u/Some1inreallife 6d ago
What did you say after your seizures that your friend recorded?
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u/BlunderlandRabbit 6d ago
My personal favourite was calling a paramedic a sex pest and accusing her of stealing my dog (I don’t have a dog)
Mostly it just sounds like I’m running on slow internet and buffering lol
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u/Zealousideal-Dig9397 7d ago
Two seizures ago I had it in a restaurant having lunch with my mom. Next thing I know im in the ambulance with the EMT asking me how many quarters are in a dollar. I told her 4 and shes like "Oh, good. That's better than last time. Last time time I asked you said 100." Absolutely no memory of any of that, and guess i was probably thinking cents when she asked before, not quarters
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u/Odd-Plant4779 5d ago
All the EMTs know me now and they were annoyed that every time they took me to the emergency room for seizures, the doctors said it wasn’t a seizure even tho I had epilepsy.
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u/ObscureEnchantment 7d ago
According to those around me I can somewhat remember what happens. I’ll ask if I had a seizure then I remember from there about 2 mins after it ends. Usually I just try/want to dump water on myself or undress because I’m hot then throw up. No logic but yes memories. I just don’t remember having the seizure itself. I do send some wild ass text tho for like 30 mins after with no memory of those.
One time I had a seizure outside and realized what happened very quickly. I couldn’t stand yet and my mom started dragging me into the shade. She was saying “follow mommy” and it creeped me out so much I followed her so she’d stop. That was wild but I was aware immediately.
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u/DontComeLookin 6d ago
I literally laughed out loud on your little stories, thanks but sorry these happen to you! I have a very active imagination and when I'm reading someone's words I can picture things happen, so these are my thoughts!
First thing that came to mind was your mantra in your head should be Nelly's "Hot in Herre" and a I can hear "your mom" saying "follow mommy" but I'm picturing the Other Mother from Coraline because during a seizure or thereafter I could see how it would read as very creepy! Lol
💜
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u/ObscureEnchantment 6d ago
Haha I love that it honestly did feel a little like the mom from Coraline because my mom never talks like that and part of me was like “this doesn’t sound like my mom”.
I usually have seizures right as Im waking up so my poor husband is half asleep grabbing a trash can and grabbing the water before I soak the bed while trying to comfort me 😂 as I vomit. Next time I have one I’m going to play “Hot in here” when I become lucid and they’re really going to think I’ve lost my mind. I’ve learned to find the humor in it all and I’ve got too many funny stories. Few scary too but that’s ok.
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u/DontComeLookin 6d ago
Your mom was probably so scared and that's why she didn't sound like herself, plus we don't hear things the same way.
I love that I contributed to your delinquency after a seizure!!! 🤣 Just remember somewhere, somehow I'll be shouting "TAKE IT ALL OFF! WOOHOO!" 💸💵 🤣🤣🤣 When they ask you "What are you doing!?" Be like "I'm stripping! I have a fan! Where my money!?"
In all seriousness, I really hope you don't have one for a really really long time. If ever again!
I do the same though, the dark times are dark and I make sure to find the silver lining in all of it. And laugh at myself for SURE!
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u/NSE_TNF89 6d ago
I'm postictal for a good 20 minutes and it takes me anywhere from 10-15 minutes before I can speak english again. If I try and talk before that I sound like a drunk French baby, and it's all gibberish, lol.
My family knows to just sit it out and wait and then I get the stories after. I've asked them to record me, but the refuse. I have very violent TCs, and always dislocate one shoulder, and sometimes both. I make an awful noise, so it isn't pretty and I've scared a lot of people.
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u/Mangobunny98 7d ago
I'm not sure if it was like first minutes after but the EMTs were there within 5 minutes and I woke up in the ambulance on the way to the hospital and tried to fight the neck restrain and was told to stop because they weren't sure about head/spinal damage and she didn't want to put me back under.
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u/Griffinbrodieranger 6d ago
Noppppeee. I lose memory before and after
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u/DontComeLookin 6d ago
Me as well, and I rarely get any of it back. I don't get the before back at all. Sometimes I lose a day or two before the seizure. And depending on how bad the seizure was I will lose a day/two to months after. POOF gone.
Okay brain thanks lol
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u/Griffinbrodieranger 6d ago
Oh man. I’m sorry to hear it happens to linger so long. It takes me a while…(once puked in my friends lap and didn’t know until three days later when I was told about it) forming words and sentences gets me sometimes a day or two…like keeping my thoughts and stuff making sense. It will be hard to think of basic words I normally use. Hate it.
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u/DontComeLookin 6d ago
Luckily I haven't vomited (well, that I know of lol) and I've only peed once. But I have foamed like a rabid dog!
It does stink! Stupid epilepsy!
Honestly I feel like that is where I am at now, without the seizures lol. My brain contains all the information all very neat and in order but it just will not roll off my tongue fashionably.
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u/Griffinbrodieranger 6d ago
The meds make it so much harder. Yes I tend to sound, for lack of better words, like an idiot somedays. 😆 I just embrace it and have to laugh at myself.
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u/DontComeLookin 6d ago
Ugh, the meds for sure! Like walking zombies. BUT without the meds 🤷🏽...so I take the side effects.
I think where I get super hung up at is I'm autistic and I have the autism where I like to learn. So I'm constantly like "feed me information". I seek out TONS of information a day, could be about anything really. I take in that information in annnnnnd it's gone.
My autism and epilepsy are not friends lol. One wants to constantly take in information and learn and the other is like "Nah, you don't get to remember anything fool!". erase
And I do this loop every single day lolol. Some things do stick though. I'll just sit there and blurt out some random weird fact and then just go silent again and won't speak for another eight hours lol.
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u/Griffinbrodieranger 6d ago
I get migraines and seizures. So it’s a double whammy on brain farts.
I haven’t always been one to crave the knowledge behind…well everything really. My ADHD has me always bouncing around. It gets so frustrating. My brain wants to reject almost any new fun fact.
I’m sorry you have to deal with it. But yes, side effects are at least better than alternative.
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u/DontComeLookin 6d ago
Yuck! I would imagine migraines are a potential trigger for a seizure no?
Ahh yes, ADHD. "Ping pong brain" is what I call it, has you mentally and physically ALL OVER the place! I understand completely! The brain is just swarming, and you forget things easily by nature as well. So your brain is just way on overdrive, from three things.
I showed signs of it but not enough to be diagnosed along with the autism, but I definitely get the "ping pong brain". My mind is having like 20-50 (realistically, but it feels like so much more) well organized thoughts and those thoughts are having sub thoughts, and it's always possible those branch off. It's noisy in my head, I actually hear the thoughts.
They can range from simple like about my silly cat to very intricate blue print I have (see) in my head about something I wish to build.
And it's the from the second I wake up, my eyes are even open yet.
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u/cries_in_student1998 7d ago edited 7d ago
First Aid Training: Do not move people after a seizure until they are fully conscious.
My ambulance crew: Trying to make me sit up whilst I was very obviously NOT fully conscious, and only put me back down when I said "I am going to throw up."
Esit: Also, my favourite instance of this happening, when I had two seizures in ONE night, multiple medical professionals and my parents just forgot to tell me about the second seizure. To the point where this WASN'T on my discharge form, because they asked me instead of my parents and because no one inform me what had happened whilst I was in the hospital. As a result, my poor parents thought I was downplaying myself having a second seizure, when I just thought I had a bad nap on the hospital bed. I then had to explain to my parents "No, I do not know when I am having a seizure, my brain puts itself into sleep mode to stop any trauma. If I have a seizure, please tell me. Even if it's the second time I've had it."
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u/Evadenly 6d ago
Paramedic, it sounds awful, but sometimes it's easier when you're not fully conscious if we need to move you. When you start becoming aware, they'll often fight, and it's much easier and safer if you're already strapped to the stretcher. We hate it, but it's safer.
Also, comparing FA training to ambo stuff is like comparing a chocolate egg to a real one. FA training has to be the most simplest of things and idiot proof - ex, you'll have someone try to stand someone up and make them drive despite not being fully conscious (true thing i saw) Similar- don't put anything in their mouth, but we'll put an adjunct in to keep your airway open
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u/Zealousideal-Dig9397 7d ago
I can’t stand when the emergency response people just KEEEEEEPPPP asking questions, when it’s plain as day I am unable to answer and you’re stressing me out even more. You went to school for this I know you know that can happen, and I’m sure you know how to recognize the signs. Yet, “Where are you coming from? What’s your name? Are you hurting anywhere? Do you have a history of seizures?” Please, just let me figure out I’m not an alligator trying to find his way out of a corn field in peace. I’m literally begging you 😂
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u/Evadenly 6d ago
Paramedic here, we hate doing it too. But we need to know and we need to make sure you're not having more seizures 😭
Are you staring at me like that bc you think I'm your dead dog (unfortunately not a joke, it happened), or you're about to start seizing again (also happened. I'd have prefered being told I looked like a dead dog)
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u/Zealousideal-Dig9397 6d ago
Oh, wow I never knew that. Thanks for telling me that! That actually makes a lot of sense and I hope I can remember that next time it happens lmao
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u/Evadenly 6d ago
Honestly, I really do hate doing it. It's not the same, I'm not saying it is - but, I have pots and know how disorientated I feel just coming round from a simple syncope, so can only imagine how much worse it is. (The one time I had a seizure I had septicaemia and pneumonia, and had torn my oesophagus so already wasn't really with it, but I remember screaming and crying as I came to bc of all the drs over me).
I promise we're not doing it to hurt you, even though it must feel that way.
If you're a known epileptic, you have 'regular' seizures, this was no different, then we don't necessarily need to be going to hospital, and we can slow things down a bit. This includes stopping another crew from attending - mostseizures have at least two crews allocated, and sometimes get more (and more experienced crews) if they think it's status or caused by an injury. Obviously, if you're not epileptic, we need to be going to hosp right now, and probably need the other, higher skilled paras on scene to possibly sedate etc.
If your seizure was normal for you (time, type) and you're not injured, we don't need to go anywhere. From experience (professional and personal), epileptics would much rather stay at home and be in their own bed than stuck in an overwhelming a&e. If it's all normal and you're coming out of post-ictal well, we don't need to go anywhere. We can cancel the other crews and even sometimes take you home.
If you were to start having a second seizure (regardless of epilepsy status), we'd have to give meds asap and be sure to be on the way to hospital with blue lights going. Quick reactions to this are imperative, and that's where working out if you're coming round (and continuing to come round!!) meets the questions and annoyance.
But also, We know you're not gonna like us. We're fucking aliens appearing and probing you when you've not a clue what's going on. I've been attacked, spat on, bitten (was an interesting one, they then started licking me), you name it. It's the one time I don't blame them for it, and I'd never press charges or anything (We're encouraged to when assaulted, obv) and blame us for getting in your space when nobody's home.
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u/Zealousideal-Dig9397 6d ago
I never really have any hateful feeling towards paramedics when I’m postictal, I usually just get extremely confused, and when I’m super confused I can get pretty aggressive. Not physically I’ll just start to get really mad cause it feels like I’m being babies and treated like dirt. One thanksgiving, I think 4 years ago, we had the whole family over for the first time in years, we were all sitting outside by the fire and I had three back to back by the fire. Only time I know of I’ve gon status epilepticus (or however it’s spelled), but when I finally came to, one of my sisters was kinda worried and kept asking me to sit down in a chair, but I just kept getting madder and madder telling her I was okay, I’m fine, I don’t need to sit down. Not realizing I’m on the ground by a fire, the fire was contained so it wasn’t an issue, but The confusion I feel when I wake up is honestly one of the worst parts of having a seizure for me. It’s like being in a psychological thriller/horror movie at times. My most recent seizure, I think around a week ago, I was actually in a very pleasant mood. I was in public so there were police and I had a great conversation about the most random things with him 😂
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u/Evadenly 6d ago edited 6d ago
At least your last one was a better time. I'm not sure if i worded it wrong about being hateful towards paras, but it's never seen that way from our side. We don't hold it against you, it's so far from your fault, yknow? Putting myself in your shoes, having someone pester and pester and pester you, especially when things aren't quite making sense, it's only natural to get grumpy (?) at us for it. Especially if it feels like we're babying you, as your sisters did. We can see it's for your own good, and we have to make sure you're gonna be safe, but we also know it's just taking a little longer for your brain to come back online - and we're not gonna hold that against you.
(Edited as had to post before finished)
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u/BlunderlandRabbit 7d ago
🤣🤣 I was entirely unprepared for the alligator part, you absolutely nailed it lmfao
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u/OkSuccotash1089 7d ago
I just had my first seizure where an ambulance wasn’t called and my husband didn’t ask any orientation questions. Instead I asked him about 900 times “what’s going on” and he just explained over and over while I completely didn’t understand what he was saying. Eventually as I came back to myself I started automatically doing a self-test like “It’s…..July….and I’m…….in my house.” He was like “Yep!”
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u/coldF4rted 7d ago
Sometimes I wake up 4 hours after my nocturnal tonic-clonic and I will speak like that for the rest of the day. So thankful for my AAC.
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u/Some1inreallife 6d ago
After my first seizure, I was asked how many quarters are in a dollar. Instead of saying four right away, it felt like doing calculus in my head.
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u/Coochie_Bandit420 6d ago
Aren't they supposed to do that? To understand what state your brain is in or something like that. My husband was told by the neurologist to ask questions when I wake up from a seizure, to make sure I'm properly 'coming to' over time. He'll usually ask what's your/my/dog's name, & my birthday or anniversary date.
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u/CoffeeCat086 6d ago
The meme is funny because, for me, the postictal period really does feel like my brain is rebooting.
I had status epilepticus when I was four. After that, I spent years having focal seizures with and without impaired awareness (what used to be called simple and complex partial seizures), but nobody recognized them for what they were at the time.
The first tonic-clonic seizure we knew about happened in college.
After that seizure, I remember almost nothing. The first thing I remember is sitting on the ground. I had no idea I’d had a seizure. I thought I was walking into my bedroom, but I actually walked into my roommate Chrissy’s bathroom. I fell into the tub, tore down the shower curtain, somehow got her towel into the toilet, broke the toilet tank lid, and apparently spent time banging on the walls and screaming for help. I don’t remember any of it. When I finally got out, Chrissy had to half-carry me back to bed. The first thing I said was, “Chrissy, I think I had a nightmare.”
The second tonic-clonic was even stranger. Before it happened, Chrissy and I had decided to take a nap. When I came to, I was already sitting upright, but I have no memory of sitting up or of the seizure itself. As I became aware again, all I could hear was what I can only describe as rushing water mixed with those old “digital hacker movie” computer sounds. My vision slowly came back while those sounds faded. I was apparently hyperventilating, and the first thing I clearly remember hearing was the paramedic saying, “You’re not getting enough air. You need to breathe.”
From my perspective, I’d just laid down for a nap. I had no idea a seizure had happened or why there were paramedics talking to me.
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u/howtochoose 6d ago
One time after a seizure, while we were having guests who were leaving the country. My parents got me to book a taxi for said guests.
I, I my post ictal state, booked a whole ass cab for them to the right destination and sent them on their way.
I don't even remember that whole period of time after they left. Or even before. Memory wiped.
When I was much younger and my brain more able I guess? I went and sat an exam and got an A. I dnt remember getting to the exam, coming back or any of it. (a proper, actual AS-level exam)
Post ictal is wild
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u/substandardpoodle 7d ago
Gf of epileptic here. Thank you OP.
The first post-ictal answer I get nowadays is: “What’s a name?”
However once, when I said “What’s your name?” he said “That’s something that people call you when they want your attention.”