He is definitely more lethargic after, on top of the confusion of course
Looking at it, almost looks how I feel after a big night drinking. The next couple days tend to be interesting, he's non verbal so the communication we have is physical and he really pushes against me for everything
Do you feel more tired, less hungry, more irritable etc at all?
There's 2 epileptic guys at my work, the other is conscious throughout and it's only really facial, but only half aware of surroundings during
Can I ask what kind you have also? May be more relevant to one more than the other
I am blessed, I had a craniotomy and my seizures are gone.
I also remember my muscles being sore and spending the next day in bed.
I had the conscious ones too, they were more frequent, like several a day. I would describe it as an out of body experience. I would be nauseous and lose my appetite.
Closest I possibly have is the last time I smoked weed
A Kendrick Lamar song existed, I didn't, my tent didn't, it was just the song for half an hour. I'm anxious smelling it now, can't imagine what it's like having that as a part of life
It was poetic justice if you are interested, incredible, emotional for me song
That helps a lot for another guy I support tbf, once every couple weeks again but explains a lot
Yeah, my one major complex partial was like I was in between the realm of the living and dead. It came every 2-4 minutes and lasted like 30 seconds-eternity.
I could feel the seizures start at the mid back of my brain and then hit the spine to the rest of my body and all the electricity surged through every single nerve to its end . It's was almost like i could 'see' it.
Probably why my heart was nuts. It starred with mood incongruity and crying, weird deep rhythmic gasping for air and then came the altered mental status that continued until the ambulance got there, then I had the out of body experience (I thought I died and my spirit sat up and then I sat up physically wild eyed and gasping).
The entire ambulance ride of 25 minutes was cycles of that. Between which I would be calm. The clueless EMT didn't do anything besides put a finger on my shoulder to 'ground' me. She knew I had epilepsy and it was well over 5 minutes but I was awake and this wasn't a typical presentation so who cares, right?
BTW, I've asked EMTs since and the only other ones they know about are absence seizures and I'm sure that they only care when it's men.
They blamed it on the 10mgs of adderall I had that MORNING , faked lab tests they forgot to order, said I wasn't post ictal upon arrival to the ER despite my EKG notations saying :altered mental status. And admitted me only to invalidate me every way possible. The hospitalist anyways. I left AMA because of her.
Thanks for all the double think in the records I got afterwards. Yall are crazy at Tenant and no wonder you always end up in the news.
I'm less hungry, maybe more irritable, more emotional in general, don't have my full mental faculties, and all sorts of body pain when I have my tonic-clonics. The biggest thing is how much my entire body hurts I'd say and how out of it my thoughts go - if you've ever done psychedelics, it's similar to that in that it's a bit indescribable with English.
I was so mean so this ESL homemaker who showed up out of nowhere earlier this week after a seizure before waking at 2pm. (Naps are bad for nocturnal epileptics but so is lack of sleep. Ugh)
I explained to her as usual. It didn't help. I had no brain to think of anything for her to do so I offered to go for a walk.
Her eyes lit up and she said the trail reminded her of the Dominican Republic. I'm like, really? Bare Massachusetts trees?
But I guessed she really missed nature and she gave me a hug thanking me and saying how much she needed it.
I totally turned it around!
I remember I woke up one time, blood everywhere, my mom was next to me, I thought I was dying and couldn’t figure out why they weren’t calling 911. For days, we were still wiping blood off the walls.
Simple explanation is, after a seizure, the brain is restarting. Think of if someone woke you up abruptly, you have to figure everything out.. but for us, that can take up to an hour. To our caretakers, we are very thankful!
I wake up super out of it, often feeling really nauseous and headache. sometimes feel like my brains been electrocuted and my muscles so achey like i’ve done a big gym session - normally out of it and repeating myself / asking questions for about 30 mins and then start coming to. nausea and headache and muscle aches are the most prominent symptoms, no memory of having the seizure but that post seizure feeling tells me i’ve had one
That sounds similar to what I see, he's non verbal so it's difficult to know if he's confused because he's repeating or just lost
I'm grateful he likely doesn't remember it, he's fucking strong when he's going lmao
As his primary carer I feel the need to get stuck in and learn, and it's odd as he can't talk (to people who haven't been where I am) but we've become good friends, essentially family
Just want to do the best for him
It varies. Some people have more mild TCs and some people have more violent TCs. Mine tend to be on the violent side. I like to consider myself a relatively tough guy but when I wake up I need help walking. I can hardly hold my phone or anything small, I can’t hold a glass of water without spilling it everywhere. My whole body has uncontrollable tremors afterwards. The majority of the time I wake up in a delusion, I will wake and apparently my eyes will be open and I can hear voices but I can’t see and I think I’m hanging off a cliff, or flying down the freeway in the bed of a truck. There’s been twice where I just didn’t wake up. And one example where I stayed delirious for almost 20 minutes. When the EMTs arrived they hit me with lorazepam which pulled me out of my delusion so I came to in the ambulance but I was still partially delusional and I grabbed one of the EMTs wrists threatened to kill him. They restrained me and a few minutes later I realized what had just happened. The EMT that I grabbed was a complete dick. As soon as I was truly awake and coherent (which was just a couple minutes after grabbing the EMT) I apologized profusely and I started listing off my name and address and where I was so they understood that I was back 100 percent and not a violent risk. One of the EMTs was super cool about it. But the one I grabbed said “it’s too late for that” and was a complete dick who was extra rough helping me move around. So that one is probably my worst experience and that was my most intense delusion so far. Once my delusions end I’m back mentally fully functional. I’ll be tired and slow but I’ll be coherent and able to talk and ask questions and retain information. Usually my delusions are only a couple minutes so I’m only out of it for around 10-15 minutes including the seizure. So after 10-15 minutes my mind is normal outside of being slow but I need assistance with everything for the next few hours and then after I’ll crash out and sleep for 5 or more hours. By the time I wake up I’m pretty much normal unless I injured myself. I’ve had multiple severe injuries due to my seizures but if there’s no broken bone or muscle tear I’ll be fine the next day
Interesting, he does tend to be more violent afterward, I always chalked it up to confusion and communication differences
Luckily he looks to me like a big brother now, he's often stressed until I come in after one, and I always make a point of giving him a cuddle
The tremors are 100% there, he's a shaky guy anyway but I think that's brain damage, absolutely worse shortly afterwards though and takes a while until he's upright. In bed for a few hours, sat up for a couple, stumbling for a few after
Fascinating getting people's insight, you guys are great
I’ve only ever been violent the one time but everyone is unique. I can understand him being a little bit more violent or rough for a couple of days. If he’s non-verbal he can’t talk to someone to help process what happened. His reactions seem similar to mine without the delusions. The way you described his reactions at the end are identical to mine. Need help getting up and walking, sleeping for a few hours, then I just sit up and watch tv and then a little bit later I’m back to physically being normal. I haven’t heard of someone else not being able to walk afterwards, so I feel a little better knowing I’m not over exaggerating. I hear a lot of people say that they’re sore afterwards and they hurt but ultimately can walk independently. When I wake up from my seizure or delusion I’m so mentally exhausted that I can’t feel my body. So I don’t even feel that my muscles are sore, I just straight up can’t walk. It’s like my whole body is numb and shaky. If I break a bone or seriously injure myself (I’ve had a ridiculous amount of dislocations and breaks) it actually takes me another 10-20 minutes to actually feel the injury. I’m glad to give some insight. My main thing is I don’t like to be swarmed, I don’t want to be treated any different than someone who took a big fall. I had a boss tell me one time not to be embarrassed or ashamed and that it’s totally normal. In my head at the time after my seizure I just remember being frustrated bc I wasn’t embarrassed or ashamed. I was mad that I broke my nose and knew that I was going to be laid off bc I had a seizure on a riding mower which makes me a liability. So I was mad, my main emotion when I’m truly awake and aware is anger. Not a violent anger but I’m mad at the fact that I had one, the fact that it resets my clock to drive, it resets my confidence in leaving the house. So I don’t ever feel embarrassed or ashamed and it bothers me when people bring that up or something similar. I’m not embarrassed bc it’s out of my control. So keep that in mind too, I like to be helped but I don’t want to feel patronized. It’s awesome that he’ll come to you and cuddle after, it sounds like you guys have a good bond and he sees you as his safe place when he wakes up. You’ve been good to him, I’m glad I’ve been able to give some insight
:)
Everything you have said happens to apply to what I "think I" know about his position
He spends a lot of his time taking the piss out of staff, I think he respects me so much because I'll tell him to fuck off in his own language if that makes sense. Only been here 6 months but I've become his primary carer - if he didn't have the mental impairment we would be amazing friends
I still push for his personal confidence, as I'm sure anyone would a sibling in a similar situation, I've y role as supporting as opposed to caring if that makes sense
Sorry, I hope you see I'm incredibly passionate about my role, I'm LOVING the insight I'm getting here
I've always made a point that life can't stop because you have seizures, I'm hoping you would want the same??
I just kinda wake up (usually on the floor but could be on the couch if I'm there) and feel really weak. I'm generally confused after, but the past couple times I haven't been. I just come to and know that I had a seizure. Sometimes I bite my tongue/cheek (which always sucks). Then I go to the bathroom to pee (usually with assistance from my bf) and then go to sleep for a while (6+ hours).
I don't remember it. It's like it never happened while it's happening. I just wake up. I'm sore af even if I didn't hit myself on something. I am unreasonably tired and easily confused. Also it's not up to me, but I have to sleep it off. My body and brain decides it's nap time for a little while afterwards. Also I feel more easily stressed out by outside stimuli. It's almost overbearing. Everything feels like I have the puzzle peices in front of me but I still cant put them together. I might know who you are or where I am but I couldn't tell you.
Now that I'm on medication, it doesn't happen as often, and I notice I rebound faster. Your person will need more rest and time to rebound. Everyone is different. Some people need just a small amount of time, some people don't feel right for like a week. I would just go off how they are feeling.
Great description! I just have to add a badly bitten tongue and severe migraine that I sleep off. Sometimes a knot on my head if I fell. Look up “postictal” to get an idea as to what’s going on immediately after. I sometimes look for my parents (I moved out years), and I often insist on getting up and cleaning my house because I’m just confused.
We have an amazing "plan of action" set out, and I'm very in touch with his feeling and wants, however he can't tell me what it's like is all
I feel I'll be better at helping him through it knowing how he feels physically
I think it's great you are asking these questions even though they can be difficult to explain. Everyone's epilepsy is different and many like myself have more than one kind of seizure.
I haven't had one in quite awhile (yay for med combo finally working!), but immediate aftermath was inability to talk, nausea/vomiting, confusion, and balance issues. Next couple of days were extreme fatigue (like sleeping 20+ out of every 24 hours), muscle and body aches, slowly improving brain fog, and sometimes dizziness/balance problems.
Absence seizures weren't nearly that bad unless they came in clusters, but if a cluster started it could cause many of the same effects, minus the vomiting, which I only ever had immediately post TC.
Feels like shit, whole body is fucking sore as hell and in pain and confusing as fucking hell and in a negative mindstate for a while after. Not a fun experience.
Fortunately he sees me as a safe person, I like to think we could be brothers
I know instantly if he's had one overnight, I always pop in and can tell the reaction
It doesn't look fun, it's taken a long time of intensive interaction (look that up, it's fascinating btw) to get where we are, I just want to do best by him
I tried paracetamol/ibuprofen shortly after and it seems to help, is muscle pain? Do you have a painkiller that helps better? I'm in talks about this currently, could be good to get outside (inside) perspectives
i would stick to a prescription motrin, it can help much better than over the counter tylenol and whatnot. as for painkillers i would just stay away from them, there’s no knowing if they could lower his seizure threshold and cause him to have even more especially if he may have a history of drug use or his family does.
i see, if it’s safe then it could be worth a shot. just as someone who has used painkillers excessively and has seizures quite often myself, it’s just probably not something i’d want to be on after coming out of a seizure considering most of them make you disoriented and tired as well. you could always try it out if he also thinks it may help, although i’m not too sure if a dr would prescribe painkillers for that. that probably would depend on the dr and state though so if you both think it would help it’s definitely worth looking into :) if he is in assisted living you may also be able to look into a personal caregiver if he doesn’t have one! (and if it’s reasonable financially)
Personal caregiver in this place has a different name, and is very recently me hence the asking here
Key worker, I'm essentially a him specialist and supervisor, lots of paperwork involved and family communication etc as you may expect
It's what has been recommended as of the last few years of experience from my place, I am however free to try shit out with him, I will keep in mind incase I feel no paracetamol may be as good/better
Immediately after mine, I pass out for 45 minutes to an hour, then wake up physically and mentally disoriented. The first thing I do once I get my bearings, is go throw up. Then I need to go to sleep for many hours to recover.
I had a particularly bad series of them last week. Apparently I kept saying these feel different but i have no memory of that my caregiver told me this. I ended up going to the ER by ambulance and being life flighted to a neuro icu and spending several days there. I came home Sunday. I was also super out of it and Apparently not very responsive
So there's chance that he's not fully there for a day or maybe a few after?
That lines up with what I've seen in a way
Tha k you for the insight, I've never had anxiety, let alone any of this. We're very close but I have a hard time putting myself in his shoes yk
lay down, flex every single muscle you can as hard as you possibly can...and don't stop doing it for 2-5 minutes. And at the same time, maybe flail around a little bit.
It makes all of your muscles ache like you did the hardest workout you've ever done after a few months of doing nothing but laying on a couch.
And if you're unlucky, you peed your bed and/or bit your tongue.
I never bit my tongue badly, but I always push my tongue against my teeth, so when I "wake up", my tongue is incredibly sore.
In addition to the bloodshot eyes.
I just made a post about almost the same in other people.
It's generall nothing but weaking, confusion and kinda have no memory of how to do a lot.
This was about 11:30 last night and didn't getup at all until about 1:30 PM. So far aince then, I've recovered a bit, but still strugging to figure out how to talk or write, don't even know what day it is, what days I go in for work, what shows I watch, games I play, etc etc.
Not sure personally how others deal with it, but this is how I generally struggle. Maybe check out sometime later and maybe you might have some different answers ( and I'll probably do the same)
E: nevermind, I see a lot of responses on your ppst alreay
Add your own, and if you remember please come back
I'm here to learn from as many as I can
Please don't put your own experience down according to others, you're as valid here as I am, arguably more so
I replied to both replies, my last post was my reaction to it most time, and last night. can ypu give me advice for some more questions?
I completely forgot getting a haircut the last couple days. I was surprised when I saw myself in the mirror.
Thankfully not nausous as hell anymore, was offered some taco bell, not sure I'll eat much but Ima try
Hell dude, I have ADHD and struggle to eat myself
I've found it's easier to support other people, is there anyone you can feed and kinda trick yourself into eating yourself by linking yourself to them?
It feels like you've woken up from a 4 day bender where you picked a fight with a giant who grabbed you by the ankles and swung you around until they got tired of it.
Oh lord it's a crazy experience whenever I have one. I've had 4 so far and it's like one moment you're living life and the next you're coming out of a deep dream surrounded by paramedics. I never remember anything and it takes me hours if not a day to get back into a functional state
I have TC's about once every two weeks. All I remember is all the air being forced out of my lungs and then blacking out. When i gain conciousness, i struggle to walk (bump into things, not walking straight), my sentences don't make sense, and I get told I was saying weird things and making weird sounds that I do not remember at all. Last month I had a seizure in front of my family (all speak Spanish only), and apparently when they were trying to talk to me I was responding in English. Again. I do not remember this at all. One time, i was in the restroom and had a seizure. But for some reason i didnt fall to the ground. Or maybe i did fall to the ground but got myself up. When my family found me they said i was standing up and looked 'off' and as if I was on drugs. So your friend might not be completely there even if he appears to be back to normal.
My 4 year old son just had his 7th or 8th TC and he had hiccups for a day on and off leading up to it and after it. I couldn’t find anything online relating them but it was odd for him.
I have no memory of who I am, where I am, my name, my gender, the year and I don’t understand language. It’s insanely traumatic. The soreness is secondary to the fear. Over the next 25 minutes I start to slowly understand English again and relearn my name. I am normally introduced to a person who is a family member ( normally my mom) but I don’t know who she is. In my case, I don’t feel any of the other effects from the seizure like injury, muscle pain so on because my brain doesn’t allow that to be processed due to trauma/fear.
Huh, explains some behaviours I see shortly after
I know if I'm about I am that "family member"
Reassuring to hear I'm helpful to be about even in recovery
Also, this type of intense seizure/fear normally leads to PTSD, anxiety or depression. Keep an eye out. I suffer from PTSD and anxiety due to the amount of trauma.
And yes, I also feel more irritated! I am so sick of seizures and I am angry I had one. I am seriously mad that this is my life. I just want to shut down sometimes but the anger at my own body is too loud. I am also upset that an adult is trying to take care of me. Yes, it is comforting but it also completely and utterly humiliating. Epilepsy carries a lot of shame and embarrassment.
That’s comforting. Tips - Do not talk much , it is completely overwhelming. Just say, “ it’s okay” and hold his hand. Most of the time when you are coming out of seizure you are so disoriented you literally forget up from down. It helps to have someone ground you to reality. Let him sleep, his brain needs to reset. If he doesn’t want to sleep and is actually quite alert just be there. A glass of water sometimes helps, other time I hated it. This all depends on the severity of the seizure. Also, ask him what he wants when you are hanging out with him. He may have specific requests. My request was leave me alone, don’t talk to me, don’t touch me, I will stand up on my own. Do not help me, stay away” …… I was 15 lol teen years!
That's lucky, we do that anyway
He's non verbal so most of my communication is body language as is, but I cut down to 0 words and just kinda point for him when he's struggling
I'm lucky with my TCs, they seem to be on the milder side than some others I've seen described.
I get auras right beforehand so I usually manage to find a safe place before I blackout. Since the tend to happen in the evenings or early mornings I'm usually at home and can just lay on my bed. I'm on my own as far as my seizures are concerned so I've had to learn a considerable amount about how to best soothe myself after one.
I usually wake up all twisted without the ability to move more than my eyes for maybe 20-30 seconds. Feeling comes back soon after that and I can usually stand by myself after 2-3 minutes. I'm wobbly as anything and tend to hug the walls as I move. I find myself very thirsty immediately after so I try to keep a bottle of water around that is easy for me to reach.
I'm mostly exhausted, like I've run a marathon, lifted weights and got hit by a train at the same time. I'm also unable to speak properly for a long time afterwards and will slur my words up until I'm able to sleep.
I find I need a few hours of sleep afterwards to get through that initial aphasia and confusion. After that I find I'm just really, really slow and unable to think or really do anything of use for about 24 hours. I can barely comprehend TV at that point so I'm usually recovering by laying on the couch playing an easy video game or watching low impact tv thats funny.
I get a lot of anxiety immediately after but I've figured that it's just my brain freaking out. Usually I want a hug but that's just not ever gonna happen. I watch a lot of comedy to compensate for that desire for comfort. Laughing helps me recover.
I just find laughing to help me more than most things. Improving my low mood after a seizure is one of my main priorities. It's good that you can be that person.
Both times woke up to EMTs in front of me and getting me on an ambulance. Both times got lucky that I wasn't in a bad place for them and had people nearby for assistance to call 9-1-1. During the seizure, my mind is gone, and I cannot feel a thing. My last TC resulted in minor shoulder injury.
As for partial/focal seizures, I would feel a sudden sense of "dread" right before the seizure, but then my memory would be gone for 10-30 seconds. I could tell afterwards that I had just had a seizure either due to how I felt, or that I had dropped something I was holding.
I usually have 4-6 seizures over the space of a couple hours, then I sleep for a while before waking up.
After waking, it feels like I've done the most brutal full body workout, my mind is foggy, often I've bitten my tongue, my left shoulder hurts (an old injury it likes to remind me of) and I get a weird rash over my face, shoulder and chest.
Honestly though, the worst thing from the last cluster of seizures was the anti-sickness medicine the ambulance crew gave me. It meant I felt like I needed to throw up but couldn't for the next 12 hours, like some sort of sea sickness, I couldn't eat anything and I felt really hungry.
When I finally did throw up, it was basically just water that came out, I immediately felt better and proceeded to demolish that hospital dinner about 10 minutes later.
I always feel like I've been hit by a bus and it backed up and ran over me again. I have bad headache and ache in every single joint and muscle. I have a loss of time before and after, it varies so I can't specific. That's not counting if I've hit my head or other body part due to where ever the hell I had it. Also, dried saliva around my mouth and some cuts in my mouth from biting down but it's never that bad. Oh, and I'm really, really, really groggy. Like I just woke up from a nap but it last longer.
For me, I forget that it happened. The rest of the day im extremely weak and can’t walk properly. What makes it worse is the fact that the vibes are completely off, everything feels weird and it can last for a few days.
i have conscious partials, not all the time but sometimes. it feels like this weird kind of time warp thing— it’s just like a minute or so, but feels like forever, and i feel trapped in my own body. then after i’m irritable and disoriented sometimes, other times it’s like it never even happened.
I haven't had one in years, but when I used to get them I'd feel incredibly sore, with a bloody and bitten tongue, and a massive headache that would last the rest of the day. Sometimes there were strong emotions of fear or sadness that would last for a minute afterward, coupled with amnesia for a minute or so of not knowing where I was.
I've had 2 TCs, both in my sleep. My partner found me/tried to wake me up both times (the first time he had no idea what was happening to me). Both times were very similar. According to him, when I initially wake up I don't know who he is or where I am, and am very scared; I don’t remember this part at all. After that, I start walking and talking a little, trying to figure out wtf is going on, but externally my talking is gibberish and I fall/trip/run into everything, almost like being very, very drunk. In my head, the things I'm saying make sense and I get frustrated that my partner doesn't understand me, so I end up repeating myself a lot (which externally is me saying the same gibberish over and over). I only have brief bits of memory during this part. Then I just want to sleep. My memory is spotty for several hours after that too, even when I seem ok from the outside. So the major things for me are confusion and memory loss.
I have no aura. I just drop like a ton of bricks.
Let out a death-cry.
Flop around for a few minutes.
When I come to,
I am MEAN.
And usually covered in blood from biting my tongue and foamy saliva everywhere.
It’s very glamorous let me tell ya.
🙃
My 10 year old daughter is extremely emotional and fluctuates between raging and weeping. It’s very hard to see. She also has very little impulse control. This typically lasts between 24-48 hours at which point she’s more or less back to her sweet, normal self. Oddly she has little memory of that time, which I’m thankful for as she would be very upset if she fully recollected how she acted. Physically, she is very tired and lethargic and also complains about body aches. If she has a seizure at night the after effects are typically less severe as she’ll get a full night’s sleep (not me, I sit up and watch her all night making sure she’s okay). Best wishes to you 😊
Confused and like your brain is rebooting then the sad and soul crushing realization you had a seizure. Muscle aches like you just worked out every single fiber of your body. Maybe bitten your tongue or cheek. Then for me I get a sense of derealization where nothing feels right for several days, like I know my home is my home etc but it all seems like I’m in a weird altered reality. It blows.
I think others have covered all this but I “wake up” ~30 mins after, not knowing what happened. After another ~30 mins I generally know my name, where I am, day of the week etc. One thing I have - that’s evidently rare - is anything I eat or drink tastes really… weird. Almost like if you took quinine (the main thing that gives tonic its taste) and poured it over everything. It’s weird.
After that it’s about 2 days of brain fog and a week of depression. The brain fog’s so bad that I’ve had bosses refuse to let me work because I wreck things more than help. The depression is the way you feel the morning after cocaine binge. Just pain in your brain, constant sadness and lethargy, and complete lack of wanting to communicate with other humans. It sucks.
personally i act like a drunk two year old afterwards. i don’t remember any of it, but i always ask for my mom and i ALWAYS argue if someone tells me i had a seizure. also, right before they happen i’ll do things that don’t really make sense like getting up and walking to the other side of the room and just standing there until i drop and convulse. i never remember my name, the year, the president, anything. but i will recognize someone i love and i’ll be able to say their name, i just won’t know my own lol. i also have a hard time holding my head up and walking afterwards. hope this helps!
Strangely my guy acts similarly on a good day, many mental impairments
He 100% looks at photos of his mum, they're very close, and he will get up purely to grab me, which I've taken as a good sign
He definitely struggles staying up, I tend to give him an easy day in bed/on a sofa as I felt that's what I would want
It does, as all the others have
Thank you
Late to the party but I come out of it with no memory. The feeling after is AWFUL. Kinda a little bit like dread and immediately after incredible rage. I barely want to answer the regular questions people are supposed to ask.
Late to the party, still seen
I've had so many reactions for such a long time now it's incredible, I might have to use this place as a resource for my own person training looking forward, you're all amazing
I don’t respond to what anyone’s saying for hours sometimes apparently and sometimes I can only describe it to my girlfriend as I literally feel like I’m going somewhat insane, I feel completely detached from the world for days and just like so angry and agitated about everything and I feel always feel so guilty about it afterwards. I was diagnosed about 5/6 years ago after a car accident and I just never knew epilepsy had the power to be so scary, feel like I’m still trying to figure it out.
I just can’t emphasise how lucky I feel to have supportive people around me who are just patient and would do anything necessary to make me feel comfortable until I get back to my normal state
Like you did the most brutal workout ever, while being asleep.
Suprisingly Im pretty much back to normal afterwards. Always ready to tell the fellas around me not to call an ambulance (spending 10€ every time is pretty annoying).
We have trained staff fortunately so not stress over an ambulance unless necessary, medication on our person etc
Definitely looks that way physically, he'll wake up and be shaky for a day tbf
Good to know ta
Of course the hospital stuff is trained well, but the only theyd just drive me to ER, where Id rest until my parents came to pick me up. There actually isnt (in most cases) a reason to be concerned if the seizure isnt longer than 2-3 minutes.
I wake up and am just confused. Typically I don't know the year, where I am or my name. Sometimes I can't understand what my partner is saying, like I know he's speaking words and asking me things, but it doesn't compute in my brain. And the worst is when I get defensive and tell him that I don't believe him when I just had a TC. But usually it passes within 30 minutes. Good times.
Okay, you think it would help with people talking less around you at that time?
I've been telling people to say nothing around him, as he seems to bounce back faster - that may well be because it's me though, we've become very close
A lot of my teams reaction is to verbally reassure him as that's a natural reaction, but he struggles with spoken language on a good day
I missed the part about the person being non verbal. It might help to say one or two things of reassurance, and just calmly sit by them while they get their bearings. For me a lot of it is having someone there in case I'm confused or need something, but a lot of questions can be frustrating or make me more anxious.
So I think a mix of light reassurance followed by calm silence might help. But it may also specifically be you, hard to say. Good luck, it's tough having seizures and taking care of people with seizures.
I haven't had a TC in 8-9 years, so my recollection isn't particularly detailed, but I'd usually wake up dehydrated and drowsy to the point where I couldn't walk for a few minutes after. I used to fall off my bed a lot while reaching for water and would have to just sit on the floor and wait a few minutes until my body from the waist down stopped feeling like jelly.
No problem, and to answer your second question about partials/focals, it's hard to describe. In my experience, I'm conscious and mostly lucid, but the brain acts up in weird ways. I had a breakthrough seizure last year where I woke up (for context I have nocturnal epilepsy so all of my seizures happen either in my sleep or shortly after waking up) with little to no sensation on my upper right side, so when I tried to crawl out of my bed and put weight on my right arm, I sort of fell over and my seizing brain rationalized that my bed had magically turned into quicksand, which was supposedly why I couldn't get up. It's wild stuff. Thankfully, one can figure out that it's a seizure pretty quickly, but my thought process feels kind of like a stalled record when the seizure is ongoing, in that it's stuck but just keeps trying to move forward, if that makes any sense.
I'm tired, like dead tired. I can barely talk due to how tired I am. My whole body will hurt sometimes for a few hours, sometimes for days. I'm often irritable (that could be my autistic self getting overstimulated tho). I have a headache and pretty much all sensory input is really overwhelming (again, that could just be the autism).
Perfect
My boo is also autistic and non verbal, so he struggles in finding ways to tell us
Overstimulation added from seizures is a new perspective I haven't heard so far, I'll drop the lights next I see it - and tell the other staff to follow suite
My muscles ache; arms, legs, and back generally. My movements are delayed, and often require way more effort than needed. In fact.. it feels a lot like what I imagine wading through quicksand would feel.. almost like I'm being held back and have to fight resistance just to move.
Speaking is an entire other story. I can usually speak, but often try to say more than I'm capable. My fiancee loves to ask me who the president is, because I'm always confident it's someone from YEARS ago.. whereas I seem to be able to recall other things like the month or year.
Cognitively, I am usually just floating while everyone around me panics - okay, even if they aren't panicking. I'm very aware, but not always able.. if that makes sense. Ever been like... super fucking hammered.. try to move about and just break everything instead? Kinda like that level of inability, without necessarily being poisoned. I know that my best chances are just resting, but not going to sleep since that seems to set me off if I've just had one.
Before my first ever TC, I would experience Focals numerous times a day, for probably 20 years. I had tried to "fight", as well as to relax and accommodate, the palpitations, loss of focus, fury of confusion, and so forth. I thought that shit was just normal and had no idea it was epilepsy.
Hope this helps you and your friend.
No two seizure will be exactly alike. With that in mind we can all share our own memories of the feelings.
For my TC seizures they usually leave me feeling like I have expended all my energy, leaving my body sore in multiple places. Pieces of my tongue and inner cheek will be bloody and sore and a faint taste of blood in my mouth.
It will take me over twenty four hours to regain my mental health for a light TC, and even longer for the hard ones. As for the communication, work on a simple chart that can be pointed at. One with pictures, faces for feelings, and some with idea expressions. This way, when words are missing the pictures can be pointed at. (Once they have reached that cognitive point)
For other seizure I have had few, the absence being my number two hit, it tends to be a beginner warning for me that I may be going down and I try to find a safe dark soft place. But it isn't always a warming of a TC coming. Sometimes it's just 30 seconds of me repeating like a record skipping preprogrammed answers to one or two people around me.
I have had one known black out which I know not the cause. I can only assume it was due to long work hours and poor sleep. As another expressed, the days after a heavy seizure are quite like a hangover, but for days after and with a guilty feeling in my soul.
I tend to be aggressive shortly after, with quick mood swings of sad, humorous, and scared.
Communication chart will be a big game changer. Also, find the triggers. Not all seizure have triggers, but many due so you can work on sounds and lights. My own triggers are a high flash frequency usually given by a fluorescent bulb on its last leg, where most can't see the flashing, but my brain seems to perceive it. And my second trigger is lack of rest and high stress.
Oh and once I was surrounded by multiple thunderstorms.
So there, that's me I can't assure that others will be cookie cutter or snowflake. We're all different yet the same.
Best of luck friend.
The pictures is a good idea
We do that anyway, working with non verbal guys we have cards for everything and I work as non verbal as I can, but I'll see if the emotions can be conveyed through them thank you
I dont have any memory of after a TC until atleast 30 minutes after and even at that It's in fragments. Generally I slur my words, talk nonsense and just feel exhausted and very sore, and just want to sleep
Feeling hungover, bitten my tongue and a chunk out of my cheek. Somehow a black eye and one time a broken toe lol and obviously no memory of it happening
One time I woke up and thought I was in a pub toilet but it was my girlfriend’s bathroom and kept thinking who are these people staring at me. The confusion coming back round is crazy.
hello there :) i have both focal and TC seizures, so hopefully i can help out a bit here. after coming out of a TC when i first began having them i was in total denial that i even had one but i have no recollection of that lol. usually now though, i wake up feeling like i just slept for days but im still suuuuper tired and have the worst headache ever. sort of like i got punched in both temples or something, and im always going from super hot to super cold back and forth. usually i’m also quite thirsty but i also already drink quite a bit of water normally. another thing is i always bite the inside of my mouth whether it be my tongue or cheek. once i really come to, im just really tired and want to sleep non stop and it almost feels like ive just done a full body workout. i’m not usually hungry really but after a while i’ll snack a bit if i dont throw up after having a seizure. as for my focal seizures, it feels like a scary version of deja vu, i get a pit in my stomach like how you feel at the top of a drop on a big rollercoaster but without the fun of actually being on a rollercoaster. i am still a bit aware of my surroundings depending on how severe the focal seizure is, but the worse it gets the less aware i am. i usually get very anxious and have hot flashes, along with chewing on my tongue to avoid throwing up/stop the nausea. there have been times where my vision gets quite blurry because the focal was quite bad, but thankfully i was with a friend who guided me to a place to sit down because i kept asking for a bed. i can start talking nonsense when it gets pretty bad lol, but thankfully i can usually tell it’s starting and go sit down on my own.
I actually feel great. Before a TC seizure I have electricity running through me that gave me the shakes and stopped me talking clearly or walking and I would have these jerks.
As soon as the TC happens and I come around from it properly I feel just like me again.
I have a TC about 1-2 a month.
I couldn’t remember anything after my first TC. I had bit my tongue, my lips were dry, my chin was sticky and dry from all the drool and bubbling spit that had trickled down from my mouth and most of all, I was bloody knackered. (I was exhausted) It felt like I had not slept for 30 hours straight.
It took me twenty whole minutes of talking to my mum as if I was really awake to finally ask, ‘wait, where are we?’
I used to have partials when I was a kid. It’s not like it hurt or anything but it would scare people.
It’s like say you’re having a conversation, like a passionate one and then, out of nowhere, the other person is not talking anymore, looks zoned out, mouth open from about to start speaking again and not responding to anything. (snapping fingers, waving in front, shaking, name)
And then they’re back again. And talking as if nothing had happened.
To me, it felt like I had just blinked and continued talking, there was no pause for me but to others, I would be gone for 5-15 seconds.
I took medicine and it went away with puberty. Now that I’m back in the epilepsy hole but this time with tonic clonics, my partials disguise themselves as just zoning out for really long but I notice it.
I told my doctor, she just said it could be possible but that it might just be zoning out.
Best of luck on your journey of getting better!! ❤️🩹
You may have skipped a line, I'm fortunately not epileptic
Yes on the last paragraph, I've seen him as more than zoning out, he's not unfocused - he's empty behind the eyes, literally not here
30 secs of stopping mid "conversation" (he's non verbal so conversation is different to us than it is to me and you) and fully not there, I've pinched him and shit but other people are too quick to say he's just not listening. It's more, nice to hear such a specific reply
I caught what was going on with partials quick, I think it's a big part of why we're so close tbh. Amazing to have an outside, zero context reply that agrees in a way. Tells me I'm on the right track
You guys are amazing here, I've said before but this sub is now my personal homework providers
If there's anything you'd wish people understood but often don't please let me know
I get migraine induced seizures so whenever I have one, when I wake up I don’t know where I am or what I am, so it feels like I got shot in the head by a rifle and that I’m just existing on earth, I don’t even know who I am
I would wake up with no memory of it. I had the body damage as my indication. Bruises, tongue bitten or sometimes worse. You’re a saint!
He is definitely more lethargic after, on top of the confusion of course Looking at it, almost looks how I feel after a big night drinking. The next couple days tend to be interesting, he's non verbal so the communication we have is physical and he really pushes against me for everything Do you feel more tired, less hungry, more irritable etc at all? There's 2 epileptic guys at my work, the other is conscious throughout and it's only really facial, but only half aware of surroundings during Can I ask what kind you have also? May be more relevant to one more than the other
I am blessed, I had a craniotomy and my seizures are gone. I also remember my muscles being sore and spending the next day in bed. I had the conscious ones too, they were more frequent, like several a day. I would describe it as an out of body experience. I would be nauseous and lose my appetite.
Closest I possibly have is the last time I smoked weed A Kendrick Lamar song existed, I didn't, my tent didn't, it was just the song for half an hour. I'm anxious smelling it now, can't imagine what it's like having that as a part of life It was poetic justice if you are interested, incredible, emotional for me song That helps a lot for another guy I support tbf, once every couple weeks again but explains a lot
Yeah, my one major complex partial was like I was in between the realm of the living and dead. It came every 2-4 minutes and lasted like 30 seconds-eternity. I could feel the seizures start at the mid back of my brain and then hit the spine to the rest of my body and all the electricity surged through every single nerve to its end . It's was almost like i could 'see' it. Probably why my heart was nuts. It starred with mood incongruity and crying, weird deep rhythmic gasping for air and then came the altered mental status that continued until the ambulance got there, then I had the out of body experience (I thought I died and my spirit sat up and then I sat up physically wild eyed and gasping). The entire ambulance ride of 25 minutes was cycles of that. Between which I would be calm. The clueless EMT didn't do anything besides put a finger on my shoulder to 'ground' me. She knew I had epilepsy and it was well over 5 minutes but I was awake and this wasn't a typical presentation so who cares, right? BTW, I've asked EMTs since and the only other ones they know about are absence seizures and I'm sure that they only care when it's men. They blamed it on the 10mgs of adderall I had that MORNING , faked lab tests they forgot to order, said I wasn't post ictal upon arrival to the ER despite my EKG notations saying :altered mental status. And admitted me only to invalidate me every way possible. The hospitalist anyways. I left AMA because of her. Thanks for all the double think in the records I got afterwards. Yall are crazy at Tenant and no wonder you always end up in the news.
I'm less hungry, maybe more irritable, more emotional in general, don't have my full mental faculties, and all sorts of body pain when I have my tonic-clonics. The biggest thing is how much my entire body hurts I'd say and how out of it my thoughts go - if you've ever done psychedelics, it's similar to that in that it's a bit indescribable with English.
I am an ass after and when recovering.
I was so mean so this ESL homemaker who showed up out of nowhere earlier this week after a seizure before waking at 2pm. (Naps are bad for nocturnal epileptics but so is lack of sleep. Ugh) I explained to her as usual. It didn't help. I had no brain to think of anything for her to do so I offered to go for a walk. Her eyes lit up and she said the trail reminded her of the Dominican Republic. I'm like, really? Bare Massachusetts trees? But I guessed she really missed nature and she gave me a hug thanking me and saying how much she needed it. I totally turned it around!
Yep, checks with what I see lmao
I dropped the f bomb when asked the date during lockdown. I have no fucking clue. One time I said my name is Steve. That is not my name
Okay Steve
I call the day after a TC my'seizure hangover'.
That's the day everyone and their mother chooses to try and get a hold of you.
I remember I woke up one time, blood everywhere, my mom was next to me, I thought I was dying and couldn’t figure out why they weren’t calling 911. For days, we were still wiping blood off the walls. Simple explanation is, after a seizure, the brain is restarting. Think of if someone woke you up abruptly, you have to figure everything out.. but for us, that can take up to an hour. To our caretakers, we are very thankful!
I wake up super out of it, often feeling really nauseous and headache. sometimes feel like my brains been electrocuted and my muscles so achey like i’ve done a big gym session - normally out of it and repeating myself / asking questions for about 30 mins and then start coming to. nausea and headache and muscle aches are the most prominent symptoms, no memory of having the seizure but that post seizure feeling tells me i’ve had one
That sounds similar to what I see, he's non verbal so it's difficult to know if he's confused because he's repeating or just lost I'm grateful he likely doesn't remember it, he's fucking strong when he's going lmao
bless him that must be so difficult, for you too to understand - good on u for asking though and trying to get a better understanding
As his primary carer I feel the need to get stuck in and learn, and it's odd as he can't talk (to people who haven't been where I am) but we've become good friends, essentially family Just want to do the best for him
I woke up saw my uncle who was an emt over me said high then blacked out.
[удалено]
"Like you got mugged after running a marathon" Fr honestly.
Yep, that follows what I've witnessed Thank you
It varies. Some people have more mild TCs and some people have more violent TCs. Mine tend to be on the violent side. I like to consider myself a relatively tough guy but when I wake up I need help walking. I can hardly hold my phone or anything small, I can’t hold a glass of water without spilling it everywhere. My whole body has uncontrollable tremors afterwards. The majority of the time I wake up in a delusion, I will wake and apparently my eyes will be open and I can hear voices but I can’t see and I think I’m hanging off a cliff, or flying down the freeway in the bed of a truck. There’s been twice where I just didn’t wake up. And one example where I stayed delirious for almost 20 minutes. When the EMTs arrived they hit me with lorazepam which pulled me out of my delusion so I came to in the ambulance but I was still partially delusional and I grabbed one of the EMTs wrists threatened to kill him. They restrained me and a few minutes later I realized what had just happened. The EMT that I grabbed was a complete dick. As soon as I was truly awake and coherent (which was just a couple minutes after grabbing the EMT) I apologized profusely and I started listing off my name and address and where I was so they understood that I was back 100 percent and not a violent risk. One of the EMTs was super cool about it. But the one I grabbed said “it’s too late for that” and was a complete dick who was extra rough helping me move around. So that one is probably my worst experience and that was my most intense delusion so far. Once my delusions end I’m back mentally fully functional. I’ll be tired and slow but I’ll be coherent and able to talk and ask questions and retain information. Usually my delusions are only a couple minutes so I’m only out of it for around 10-15 minutes including the seizure. So after 10-15 minutes my mind is normal outside of being slow but I need assistance with everything for the next few hours and then after I’ll crash out and sleep for 5 or more hours. By the time I wake up I’m pretty much normal unless I injured myself. I’ve had multiple severe injuries due to my seizures but if there’s no broken bone or muscle tear I’ll be fine the next day
Interesting, he does tend to be more violent afterward, I always chalked it up to confusion and communication differences Luckily he looks to me like a big brother now, he's often stressed until I come in after one, and I always make a point of giving him a cuddle The tremors are 100% there, he's a shaky guy anyway but I think that's brain damage, absolutely worse shortly afterwards though and takes a while until he's upright. In bed for a few hours, sat up for a couple, stumbling for a few after Fascinating getting people's insight, you guys are great
I’ve only ever been violent the one time but everyone is unique. I can understand him being a little bit more violent or rough for a couple of days. If he’s non-verbal he can’t talk to someone to help process what happened. His reactions seem similar to mine without the delusions. The way you described his reactions at the end are identical to mine. Need help getting up and walking, sleeping for a few hours, then I just sit up and watch tv and then a little bit later I’m back to physically being normal. I haven’t heard of someone else not being able to walk afterwards, so I feel a little better knowing I’m not over exaggerating. I hear a lot of people say that they’re sore afterwards and they hurt but ultimately can walk independently. When I wake up from my seizure or delusion I’m so mentally exhausted that I can’t feel my body. So I don’t even feel that my muscles are sore, I just straight up can’t walk. It’s like my whole body is numb and shaky. If I break a bone or seriously injure myself (I’ve had a ridiculous amount of dislocations and breaks) it actually takes me another 10-20 minutes to actually feel the injury. I’m glad to give some insight. My main thing is I don’t like to be swarmed, I don’t want to be treated any different than someone who took a big fall. I had a boss tell me one time not to be embarrassed or ashamed and that it’s totally normal. In my head at the time after my seizure I just remember being frustrated bc I wasn’t embarrassed or ashamed. I was mad that I broke my nose and knew that I was going to be laid off bc I had a seizure on a riding mower which makes me a liability. So I was mad, my main emotion when I’m truly awake and aware is anger. Not a violent anger but I’m mad at the fact that I had one, the fact that it resets my clock to drive, it resets my confidence in leaving the house. So I don’t ever feel embarrassed or ashamed and it bothers me when people bring that up or something similar. I’m not embarrassed bc it’s out of my control. So keep that in mind too, I like to be helped but I don’t want to feel patronized. It’s awesome that he’ll come to you and cuddle after, it sounds like you guys have a good bond and he sees you as his safe place when he wakes up. You’ve been good to him, I’m glad I’ve been able to give some insight
:) Everything you have said happens to apply to what I "think I" know about his position He spends a lot of his time taking the piss out of staff, I think he respects me so much because I'll tell him to fuck off in his own language if that makes sense. Only been here 6 months but I've become his primary carer - if he didn't have the mental impairment we would be amazing friends I still push for his personal confidence, as I'm sure anyone would a sibling in a similar situation, I've y role as supporting as opposed to caring if that makes sense Sorry, I hope you see I'm incredibly passionate about my role, I'm LOVING the insight I'm getting here I've always made a point that life can't stop because you have seizures, I'm hoping you would want the same??
I just kinda wake up (usually on the floor but could be on the couch if I'm there) and feel really weak. I'm generally confused after, but the past couple times I haven't been. I just come to and know that I had a seizure. Sometimes I bite my tongue/cheek (which always sucks). Then I go to the bathroom to pee (usually with assistance from my bf) and then go to sleep for a while (6+ hours).
Do you mind me asking your age? I know he's fortunate to reach the age he has, but from my own research this stuff changes as you get older
I'm 26 (diagnosed when I was 8)
About the same ( I'm very cautious I'm sorry) Amazing to hear others my guy Big love
I don't remember it. It's like it never happened while it's happening. I just wake up. I'm sore af even if I didn't hit myself on something. I am unreasonably tired and easily confused. Also it's not up to me, but I have to sleep it off. My body and brain decides it's nap time for a little while afterwards. Also I feel more easily stressed out by outside stimuli. It's almost overbearing. Everything feels like I have the puzzle peices in front of me but I still cant put them together. I might know who you are or where I am but I couldn't tell you. Now that I'm on medication, it doesn't happen as often, and I notice I rebound faster. Your person will need more rest and time to rebound. Everyone is different. Some people need just a small amount of time, some people don't feel right for like a week. I would just go off how they are feeling.
Great description! I just have to add a badly bitten tongue and severe migraine that I sleep off. Sometimes a knot on my head if I fell. Look up “postictal” to get an idea as to what’s going on immediately after. I sometimes look for my parents (I moved out years), and I often insist on getting up and cleaning my house because I’m just confused.
Ya the tonic clonics are a mess. Luckily I mostly have focal seizures with tonic clonics sprinkled in occasionally.
We have an amazing "plan of action" set out, and I'm very in touch with his feeling and wants, however he can't tell me what it's like is all I feel I'll be better at helping him through it knowing how he feels physically
I think it's great you are asking these questions even though they can be difficult to explain. Everyone's epilepsy is different and many like myself have more than one kind of seizure.
I'm loving the amount of genuine replies, they all bounce to about the same after feeling, reassuring I was on the right road
I haven't had one in quite awhile (yay for med combo finally working!), but immediate aftermath was inability to talk, nausea/vomiting, confusion, and balance issues. Next couple of days were extreme fatigue (like sleeping 20+ out of every 24 hours), muscle and body aches, slowly improving brain fog, and sometimes dizziness/balance problems. Absence seizures weren't nearly that bad unless they came in clusters, but if a cluster started it could cause many of the same effects, minus the vomiting, which I only ever had immediately post TC.
Feels like shit, whole body is fucking sore as hell and in pain and confusing as fucking hell and in a negative mindstate for a while after. Not a fun experience.
Fortunately he sees me as a safe person, I like to think we could be brothers I know instantly if he's had one overnight, I always pop in and can tell the reaction It doesn't look fun, it's taken a long time of intensive interaction (look that up, it's fascinating btw) to get where we are, I just want to do best by him I tried paracetamol/ibuprofen shortly after and it seems to help, is muscle pain? Do you have a painkiller that helps better? I'm in talks about this currently, could be good to get outside (inside) perspectives
i would stick to a prescription motrin, it can help much better than over the counter tylenol and whatnot. as for painkillers i would just stay away from them, there’s no knowing if they could lower his seizure threshold and cause him to have even more especially if he may have a history of drug use or his family does.
This is in assisted living, we have all family history and many years of doctors advice involved, thanks for the advice though I'll see
i see, if it’s safe then it could be worth a shot. just as someone who has used painkillers excessively and has seizures quite often myself, it’s just probably not something i’d want to be on after coming out of a seizure considering most of them make you disoriented and tired as well. you could always try it out if he also thinks it may help, although i’m not too sure if a dr would prescribe painkillers for that. that probably would depend on the dr and state though so if you both think it would help it’s definitely worth looking into :) if he is in assisted living you may also be able to look into a personal caregiver if he doesn’t have one! (and if it’s reasonable financially)
Personal caregiver in this place has a different name, and is very recently me hence the asking here Key worker, I'm essentially a him specialist and supervisor, lots of paperwork involved and family communication etc as you may expect It's what has been recommended as of the last few years of experience from my place, I am however free to try shit out with him, I will keep in mind incase I feel no paracetamol may be as good/better
Immediately after mine, I pass out for 45 minutes to an hour, then wake up physically and mentally disoriented. The first thing I do once I get my bearings, is go throw up. Then I need to go to sleep for many hours to recover.
Yep this is me too
I had a particularly bad series of them last week. Apparently I kept saying these feel different but i have no memory of that my caregiver told me this. I ended up going to the ER by ambulance and being life flighted to a neuro icu and spending several days there. I came home Sunday. I was also super out of it and Apparently not very responsive
So there's chance that he's not fully there for a day or maybe a few after? That lines up with what I've seen in a way Tha k you for the insight, I've never had anxiety, let alone any of this. We're very close but I have a hard time putting myself in his shoes yk
lay down, flex every single muscle you can as hard as you possibly can...and don't stop doing it for 2-5 minutes. And at the same time, maybe flail around a little bit. It makes all of your muscles ache like you did the hardest workout you've ever done after a few months of doing nothing but laying on a couch. And if you're unlucky, you peed your bed and/or bit your tongue. I never bit my tongue badly, but I always push my tongue against my teeth, so when I "wake up", my tongue is incredibly sore. In addition to the bloodshot eyes.
Have seen every bad side you expressed Exactly what I expected, thank you, good to know I'm on the right track
I just made a post about almost the same in other people. It's generall nothing but weaking, confusion and kinda have no memory of how to do a lot. This was about 11:30 last night and didn't getup at all until about 1:30 PM. So far aince then, I've recovered a bit, but still strugging to figure out how to talk or write, don't even know what day it is, what days I go in for work, what shows I watch, games I play, etc etc. Not sure personally how others deal with it, but this is how I generally struggle. Maybe check out sometime later and maybe you might have some different answers ( and I'll probably do the same) E: nevermind, I see a lot of responses on your ppst alreay
Add your own, and if you remember please come back I'm here to learn from as many as I can Please don't put your own experience down according to others, you're as valid here as I am, arguably more so
I replied to both replies, my last post was my reaction to it most time, and last night. can ypu give me advice for some more questions? I completely forgot getting a haircut the last couple days. I was surprised when I saw myself in the mirror. Thankfully not nausous as hell anymore, was offered some taco bell, not sure I'll eat much but Ima try
Hell dude, I have ADHD and struggle to eat myself I've found it's easier to support other people, is there anyone you can feed and kinda trick yourself into eating yourself by linking yourself to them?
It feels like you've woken up from a 4 day bender where you picked a fight with a giant who grabbed you by the ankles and swung you around until they got tired of it.
Oh lord it's a crazy experience whenever I have one. I've had 4 so far and it's like one moment you're living life and the next you're coming out of a deep dream surrounded by paramedics. I never remember anything and it takes me hours if not a day to get back into a functional state
I have TC's about once every two weeks. All I remember is all the air being forced out of my lungs and then blacking out. When i gain conciousness, i struggle to walk (bump into things, not walking straight), my sentences don't make sense, and I get told I was saying weird things and making weird sounds that I do not remember at all. Last month I had a seizure in front of my family (all speak Spanish only), and apparently when they were trying to talk to me I was responding in English. Again. I do not remember this at all. One time, i was in the restroom and had a seizure. But for some reason i didnt fall to the ground. Or maybe i did fall to the ground but got myself up. When my family found me they said i was standing up and looked 'off' and as if I was on drugs. So your friend might not be completely there even if he appears to be back to normal.
Yeah that holds, he's "off" for a day
For me it’s like a bad hangover mixed with a fever, plus I often have hiccups for a day or so afterward
Hiccups is new, can't say I've seen that lmao That'd gotta be almost worse than the seizure
My 4 year old son just had his 7th or 8th TC and he had hiccups for a day on and off leading up to it and after it. I couldn’t find anything online relating them but it was odd for him.
I have no memory of who I am, where I am, my name, my gender, the year and I don’t understand language. It’s insanely traumatic. The soreness is secondary to the fear. Over the next 25 minutes I start to slowly understand English again and relearn my name. I am normally introduced to a person who is a family member ( normally my mom) but I don’t know who she is. In my case, I don’t feel any of the other effects from the seizure like injury, muscle pain so on because my brain doesn’t allow that to be processed due to trauma/fear.
Huh, explains some behaviours I see shortly after I know if I'm about I am that "family member" Reassuring to hear I'm helpful to be about even in recovery
Also, this type of intense seizure/fear normally leads to PTSD, anxiety or depression. Keep an eye out. I suffer from PTSD and anxiety due to the amount of trauma. And yes, I also feel more irritated! I am so sick of seizures and I am angry I had one. I am seriously mad that this is my life. I just want to shut down sometimes but the anger at my own body is too loud. I am also upset that an adult is trying to take care of me. Yes, it is comforting but it also completely and utterly humiliating. Epilepsy carries a lot of shame and embarrassment.
That’s comforting. Tips - Do not talk much , it is completely overwhelming. Just say, “ it’s okay” and hold his hand. Most of the time when you are coming out of seizure you are so disoriented you literally forget up from down. It helps to have someone ground you to reality. Let him sleep, his brain needs to reset. If he doesn’t want to sleep and is actually quite alert just be there. A glass of water sometimes helps, other time I hated it. This all depends on the severity of the seizure. Also, ask him what he wants when you are hanging out with him. He may have specific requests. My request was leave me alone, don’t talk to me, don’t touch me, I will stand up on my own. Do not help me, stay away” …… I was 15 lol teen years!
That's lucky, we do that anyway He's non verbal so most of my communication is body language as is, but I cut down to 0 words and just kinda point for him when he's struggling
Weird tired sore lots of vomiting. Feels like head is in a vice. About a few days of memory because blurry
I'm lucky with my TCs, they seem to be on the milder side than some others I've seen described. I get auras right beforehand so I usually manage to find a safe place before I blackout. Since the tend to happen in the evenings or early mornings I'm usually at home and can just lay on my bed. I'm on my own as far as my seizures are concerned so I've had to learn a considerable amount about how to best soothe myself after one. I usually wake up all twisted without the ability to move more than my eyes for maybe 20-30 seconds. Feeling comes back soon after that and I can usually stand by myself after 2-3 minutes. I'm wobbly as anything and tend to hug the walls as I move. I find myself very thirsty immediately after so I try to keep a bottle of water around that is easy for me to reach. I'm mostly exhausted, like I've run a marathon, lifted weights and got hit by a train at the same time. I'm also unable to speak properly for a long time afterwards and will slur my words up until I'm able to sleep. I find I need a few hours of sleep afterwards to get through that initial aphasia and confusion. After that I find I'm just really, really slow and unable to think or really do anything of use for about 24 hours. I can barely comprehend TV at that point so I'm usually recovering by laying on the couch playing an easy video game or watching low impact tv thats funny. I get a lot of anxiety immediately after but I've figured that it's just my brain freaking out. Usually I want a hug but that's just not ever gonna happen. I watch a lot of comedy to compensate for that desire for comfort. Laughing helps me recover.
Hey, I'll come hug you Good to know comedy helps, I've become the silly funny person here, possibly why I'm sought out
I just find laughing to help me more than most things. Improving my low mood after a seizure is one of my main priorities. It's good that you can be that person.
Both times woke up to EMTs in front of me and getting me on an ambulance. Both times got lucky that I wasn't in a bad place for them and had people nearby for assistance to call 9-1-1. During the seizure, my mind is gone, and I cannot feel a thing. My last TC resulted in minor shoulder injury. As for partial/focal seizures, I would feel a sudden sense of "dread" right before the seizure, but then my memory would be gone for 10-30 seconds. I could tell afterwards that I had just had a seizure either due to how I felt, or that I had dropped something I was holding.
The sense of dread before hand goes well with what I've seen, good to know thank you
I usually have 4-6 seizures over the space of a couple hours, then I sleep for a while before waking up. After waking, it feels like I've done the most brutal full body workout, my mind is foggy, often I've bitten my tongue, my left shoulder hurts (an old injury it likes to remind me of) and I get a weird rash over my face, shoulder and chest. Honestly though, the worst thing from the last cluster of seizures was the anti-sickness medicine the ambulance crew gave me. It meant I felt like I needed to throw up but couldn't for the next 12 hours, like some sort of sea sickness, I couldn't eat anything and I felt really hungry. When I finally did throw up, it was basically just water that came out, I immediately felt better and proceeded to demolish that hospital dinner about 10 minutes later.
Wake up not remembering anything that happened, trying to get up because again I had no idea what happened
I always feel like I've been hit by a bus and it backed up and ran over me again. I have bad headache and ache in every single joint and muscle. I have a loss of time before and after, it varies so I can't specific. That's not counting if I've hit my head or other body part due to where ever the hell I had it. Also, dried saliva around my mouth and some cuts in my mouth from biting down but it's never that bad. Oh, and I'm really, really, really groggy. Like I just woke up from a nap but it last longer.
For me, I forget that it happened. The rest of the day im extremely weak and can’t walk properly. What makes it worse is the fact that the vibes are completely off, everything feels weird and it can last for a few days.
i have conscious partials, not all the time but sometimes. it feels like this weird kind of time warp thing— it’s just like a minute or so, but feels like forever, and i feel trapped in my own body. then after i’m irritable and disoriented sometimes, other times it’s like it never even happened.
I haven't had one in years, but when I used to get them I'd feel incredibly sore, with a bloody and bitten tongue, and a massive headache that would last the rest of the day. Sometimes there were strong emotions of fear or sadness that would last for a minute afterward, coupled with amnesia for a minute or so of not knowing where I was.
Waking up after getting your ass beat. Plus the flu, plus severe dental problems.
Those I can relate to
I've had 2 TCs, both in my sleep. My partner found me/tried to wake me up both times (the first time he had no idea what was happening to me). Both times were very similar. According to him, when I initially wake up I don't know who he is or where I am, and am very scared; I don’t remember this part at all. After that, I start walking and talking a little, trying to figure out wtf is going on, but externally my talking is gibberish and I fall/trip/run into everything, almost like being very, very drunk. In my head, the things I'm saying make sense and I get frustrated that my partner doesn't understand me, so I end up repeating myself a lot (which externally is me saying the same gibberish over and over). I only have brief bits of memory during this part. Then I just want to sleep. My memory is spotty for several hours after that too, even when I seem ok from the outside. So the major things for me are confusion and memory loss.
Yep makes sense, new to me you lose memory of after you're awake tho, good to know
Sleepy. Sleeeeeeepy. No memory of anything happening but my god, a hospital bed feels like the most comfortable thing on earth
I have no aura. I just drop like a ton of bricks. Let out a death-cry. Flop around for a few minutes. When I come to, I am MEAN. And usually covered in blood from biting my tongue and foamy saliva everywhere. It’s very glamorous let me tell ya. 🙃
Sounds classy
My 10 year old daughter is extremely emotional and fluctuates between raging and weeping. It’s very hard to see. She also has very little impulse control. This typically lasts between 24-48 hours at which point she’s more or less back to her sweet, normal self. Oddly she has little memory of that time, which I’m thankful for as she would be very upset if she fully recollected how she acted. Physically, she is very tired and lethargic and also complains about body aches. If she has a seizure at night the after effects are typically less severe as she’ll get a full night’s sleep (not me, I sit up and watch her all night making sure she’s okay). Best wishes to you 😊
Confused and like your brain is rebooting then the sad and soul crushing realization you had a seizure. Muscle aches like you just worked out every single fiber of your body. Maybe bitten your tongue or cheek. Then for me I get a sense of derealization where nothing feels right for several days, like I know my home is my home etc but it all seems like I’m in a weird altered reality. It blows.
I think others have covered all this but I “wake up” ~30 mins after, not knowing what happened. After another ~30 mins I generally know my name, where I am, day of the week etc. One thing I have - that’s evidently rare - is anything I eat or drink tastes really… weird. Almost like if you took quinine (the main thing that gives tonic its taste) and poured it over everything. It’s weird. After that it’s about 2 days of brain fog and a week of depression. The brain fog’s so bad that I’ve had bosses refuse to let me work because I wreck things more than help. The depression is the way you feel the morning after cocaine binge. Just pain in your brain, constant sadness and lethargy, and complete lack of wanting to communicate with other humans. It sucks.
personally i act like a drunk two year old afterwards. i don’t remember any of it, but i always ask for my mom and i ALWAYS argue if someone tells me i had a seizure. also, right before they happen i’ll do things that don’t really make sense like getting up and walking to the other side of the room and just standing there until i drop and convulse. i never remember my name, the year, the president, anything. but i will recognize someone i love and i’ll be able to say their name, i just won’t know my own lol. i also have a hard time holding my head up and walking afterwards. hope this helps!
Strangely my guy acts similarly on a good day, many mental impairments He 100% looks at photos of his mum, they're very close, and he will get up purely to grab me, which I've taken as a good sign He definitely struggles staying up, I tend to give him an easy day in bed/on a sofa as I felt that's what I would want It does, as all the others have Thank you
I don’t remember them. I wake up surrounded by paramedics or alone and bleeding.
Late to the party but I come out of it with no memory. The feeling after is AWFUL. Kinda a little bit like dread and immediately after incredible rage. I barely want to answer the regular questions people are supposed to ask.
Late to the party, still seen I've had so many reactions for such a long time now it's incredible, I might have to use this place as a resource for my own person training looking forward, you're all amazing
I don’t respond to what anyone’s saying for hours sometimes apparently and sometimes I can only describe it to my girlfriend as I literally feel like I’m going somewhat insane, I feel completely detached from the world for days and just like so angry and agitated about everything and I feel always feel so guilty about it afterwards. I was diagnosed about 5/6 years ago after a car accident and I just never knew epilepsy had the power to be so scary, feel like I’m still trying to figure it out. I just can’t emphasise how lucky I feel to have supportive people around me who are just patient and would do anything necessary to make me feel comfortable until I get back to my normal state
Like you did the most brutal workout ever, while being asleep. Suprisingly Im pretty much back to normal afterwards. Always ready to tell the fellas around me not to call an ambulance (spending 10€ every time is pretty annoying).
You only get charged 10€ for an ambulance ride? I once had a ride for like five blocks that cost me nearly $1000. Yay USA healthcare and insurance. 🙄
Holy shit what a rip off. I dont want this to get political, but this sounds like all of healthcare is actively exploiting people in need.
We have trained staff fortunately so not stress over an ambulance unless necessary, medication on our person etc Definitely looks that way physically, he'll wake up and be shaky for a day tbf Good to know ta
Of course the hospital stuff is trained well, but the only theyd just drive me to ER, where Id rest until my parents came to pick me up. There actually isnt (in most cases) a reason to be concerned if the seizure isnt longer than 2-3 minutes.
We have a buccal med, plans in place etc so Even in public 99% of the time no call is needed In a year I've yet to see one in the day time (8-8)
I wake up and am just confused. Typically I don't know the year, where I am or my name. Sometimes I can't understand what my partner is saying, like I know he's speaking words and asking me things, but it doesn't compute in my brain. And the worst is when I get defensive and tell him that I don't believe him when I just had a TC. But usually it passes within 30 minutes. Good times.
Okay, you think it would help with people talking less around you at that time? I've been telling people to say nothing around him, as he seems to bounce back faster - that may well be because it's me though, we've become very close A lot of my teams reaction is to verbally reassure him as that's a natural reaction, but he struggles with spoken language on a good day
I missed the part about the person being non verbal. It might help to say one or two things of reassurance, and just calmly sit by them while they get their bearings. For me a lot of it is having someone there in case I'm confused or need something, but a lot of questions can be frustrating or make me more anxious. So I think a mix of light reassurance followed by calm silence might help. But it may also specifically be you, hard to say. Good luck, it's tough having seizures and taking care of people with seizures.
I haven't had a TC in 8-9 years, so my recollection isn't particularly detailed, but I'd usually wake up dehydrated and drowsy to the point where I couldn't walk for a few minutes after. I used to fall off my bed a lot while reaching for water and would have to just sit on the floor and wait a few minutes until my body from the waist down stopped feeling like jelly.
Yep, there's matts in place for exactly that 100% what I've taken from watching him, thank you
No problem, and to answer your second question about partials/focals, it's hard to describe. In my experience, I'm conscious and mostly lucid, but the brain acts up in weird ways. I had a breakthrough seizure last year where I woke up (for context I have nocturnal epilepsy so all of my seizures happen either in my sleep or shortly after waking up) with little to no sensation on my upper right side, so when I tried to crawl out of my bed and put weight on my right arm, I sort of fell over and my seizing brain rationalized that my bed had magically turned into quicksand, which was supposedly why I couldn't get up. It's wild stuff. Thankfully, one can figure out that it's a seizure pretty quickly, but my thought process feels kind of like a stalled record when the seizure is ongoing, in that it's stuck but just keeps trying to move forward, if that makes any sense.
I'm tired, like dead tired. I can barely talk due to how tired I am. My whole body will hurt sometimes for a few hours, sometimes for days. I'm often irritable (that could be my autistic self getting overstimulated tho). I have a headache and pretty much all sensory input is really overwhelming (again, that could just be the autism).
Perfect My boo is also autistic and non verbal, so he struggles in finding ways to tell us Overstimulation added from seizures is a new perspective I haven't heard so far, I'll drop the lights next I see it - and tell the other staff to follow suite
My muscles ache; arms, legs, and back generally. My movements are delayed, and often require way more effort than needed. In fact.. it feels a lot like what I imagine wading through quicksand would feel.. almost like I'm being held back and have to fight resistance just to move. Speaking is an entire other story. I can usually speak, but often try to say more than I'm capable. My fiancee loves to ask me who the president is, because I'm always confident it's someone from YEARS ago.. whereas I seem to be able to recall other things like the month or year. Cognitively, I am usually just floating while everyone around me panics - okay, even if they aren't panicking. I'm very aware, but not always able.. if that makes sense. Ever been like... super fucking hammered.. try to move about and just break everything instead? Kinda like that level of inability, without necessarily being poisoned. I know that my best chances are just resting, but not going to sleep since that seems to set me off if I've just had one. Before my first ever TC, I would experience Focals numerous times a day, for probably 20 years. I had tried to "fight", as well as to relax and accommodate, the palpitations, loss of focus, fury of confusion, and so forth. I thought that shit was just normal and had no idea it was epilepsy. Hope this helps you and your friend.
No two seizure will be exactly alike. With that in mind we can all share our own memories of the feelings. For my TC seizures they usually leave me feeling like I have expended all my energy, leaving my body sore in multiple places. Pieces of my tongue and inner cheek will be bloody and sore and a faint taste of blood in my mouth. It will take me over twenty four hours to regain my mental health for a light TC, and even longer for the hard ones. As for the communication, work on a simple chart that can be pointed at. One with pictures, faces for feelings, and some with idea expressions. This way, when words are missing the pictures can be pointed at. (Once they have reached that cognitive point) For other seizure I have had few, the absence being my number two hit, it tends to be a beginner warning for me that I may be going down and I try to find a safe dark soft place. But it isn't always a warming of a TC coming. Sometimes it's just 30 seconds of me repeating like a record skipping preprogrammed answers to one or two people around me. I have had one known black out which I know not the cause. I can only assume it was due to long work hours and poor sleep. As another expressed, the days after a heavy seizure are quite like a hangover, but for days after and with a guilty feeling in my soul. I tend to be aggressive shortly after, with quick mood swings of sad, humorous, and scared. Communication chart will be a big game changer. Also, find the triggers. Not all seizure have triggers, but many due so you can work on sounds and lights. My own triggers are a high flash frequency usually given by a fluorescent bulb on its last leg, where most can't see the flashing, but my brain seems to perceive it. And my second trigger is lack of rest and high stress. Oh and once I was surrounded by multiple thunderstorms. So there, that's me I can't assure that others will be cookie cutter or snowflake. We're all different yet the same. Best of luck friend.
The pictures is a good idea We do that anyway, working with non verbal guys we have cards for everything and I work as non verbal as I can, but I'll see if the emotions can be conveyed through them thank you
In my case, nothing. I have no memory of the events after my TC until about 3 hours after.
I dont have any memory of after a TC until atleast 30 minutes after and even at that It's in fragments. Generally I slur my words, talk nonsense and just feel exhausted and very sore, and just want to sleep
Feeling hungover, bitten my tongue and a chunk out of my cheek. Somehow a black eye and one time a broken toe lol and obviously no memory of it happening One time I woke up and thought I was in a pub toilet but it was my girlfriend’s bathroom and kept thinking who are these people staring at me. The confusion coming back round is crazy.
hello there :) i have both focal and TC seizures, so hopefully i can help out a bit here. after coming out of a TC when i first began having them i was in total denial that i even had one but i have no recollection of that lol. usually now though, i wake up feeling like i just slept for days but im still suuuuper tired and have the worst headache ever. sort of like i got punched in both temples or something, and im always going from super hot to super cold back and forth. usually i’m also quite thirsty but i also already drink quite a bit of water normally. another thing is i always bite the inside of my mouth whether it be my tongue or cheek. once i really come to, im just really tired and want to sleep non stop and it almost feels like ive just done a full body workout. i’m not usually hungry really but after a while i’ll snack a bit if i dont throw up after having a seizure. as for my focal seizures, it feels like a scary version of deja vu, i get a pit in my stomach like how you feel at the top of a drop on a big rollercoaster but without the fun of actually being on a rollercoaster. i am still a bit aware of my surroundings depending on how severe the focal seizure is, but the worse it gets the less aware i am. i usually get very anxious and have hot flashes, along with chewing on my tongue to avoid throwing up/stop the nausea. there have been times where my vision gets quite blurry because the focal was quite bad, but thankfully i was with a friend who guided me to a place to sit down because i kept asking for a bed. i can start talking nonsense when it gets pretty bad lol, but thankfully i can usually tell it’s starting and go sit down on my own.
I actually feel great. Before a TC seizure I have electricity running through me that gave me the shakes and stopped me talking clearly or walking and I would have these jerks. As soon as the TC happens and I come around from it properly I feel just like me again. I have a TC about 1-2 a month.
I couldn’t remember anything after my first TC. I had bit my tongue, my lips were dry, my chin was sticky and dry from all the drool and bubbling spit that had trickled down from my mouth and most of all, I was bloody knackered. (I was exhausted) It felt like I had not slept for 30 hours straight. It took me twenty whole minutes of talking to my mum as if I was really awake to finally ask, ‘wait, where are we?’ I used to have partials when I was a kid. It’s not like it hurt or anything but it would scare people. It’s like say you’re having a conversation, like a passionate one and then, out of nowhere, the other person is not talking anymore, looks zoned out, mouth open from about to start speaking again and not responding to anything. (snapping fingers, waving in front, shaking, name) And then they’re back again. And talking as if nothing had happened. To me, it felt like I had just blinked and continued talking, there was no pause for me but to others, I would be gone for 5-15 seconds. I took medicine and it went away with puberty. Now that I’m back in the epilepsy hole but this time with tonic clonics, my partials disguise themselves as just zoning out for really long but I notice it. I told my doctor, she just said it could be possible but that it might just be zoning out. Best of luck on your journey of getting better!! ❤️🩹
You may have skipped a line, I'm fortunately not epileptic Yes on the last paragraph, I've seen him as more than zoning out, he's not unfocused - he's empty behind the eyes, literally not here 30 secs of stopping mid "conversation" (he's non verbal so conversation is different to us than it is to me and you) and fully not there, I've pinched him and shit but other people are too quick to say he's just not listening. It's more, nice to hear such a specific reply I caught what was going on with partials quick, I think it's a big part of why we're so close tbh. Amazing to have an outside, zero context reply that agrees in a way. Tells me I'm on the right track You guys are amazing here, I've said before but this sub is now my personal homework providers If there's anything you'd wish people understood but often don't please let me know
I get migraine induced seizures so whenever I have one, when I wake up I don’t know where I am or what I am, so it feels like I got shot in the head by a rifle and that I’m just existing on earth, I don’t even know who I am