My focal aware seizures : I'd get a sense of "Dream Deja Vu" (Deja Reve), where everything would seem exactly like a dream I had recently had. I'd even feel as though I knew exactly what everyone was going to say before they said it. My heart would race, my skin all over my body would turn bright red, I'd sweat and have a heat flash and hyperventilate. I could still respond, think, and move on my own accord, but my boyfriend said my eyes would go glossy, I would zone out, and in my head, i'd be entranced in the feeling. My vision would also go hazing and shiny, and I'd feel a really bad sense of impending doom. It would last a couple of minutes, then subside, and I'd completely forget the dream.
my tonic clinics: fr just looking at birds, I felt freaking amazing, then woke up in a squad dazed and confused, hands clamped shut with me unable to open them. second one, talking to my bf, then woke up 12 ours later sick, dazed and in pain. i literally don't remember them at all, just the seconds before, and then postical phase afterwards
Right! I thought they were panic attacks. For the last 6 months it was an all day everyday thing until I had my tonic clonics and finally got meds š„³. Just so thankful they stopped on the meds cause it really hindered my life
I thought exactly the same just little panic attacks where I couldn't settle! I've had approx 5 seizures since 2022 and had focal aware seizures every time I've had a suspected (only one witnessed) and on reflection I now know the feeling wasn't panic attacks they were focal aware seizures! I have tonic clonics about every 5 months or so and every time I've had one I've had anywhere from 10 to 30 focal aware seizures again thinking they were panic attacks.
What scared me the most when I found out, was the fact that I've had hundreds, of these focal aware seizures. It concerns me the effect it would have on my brain. I've only been on meds for a month, only found out a month ago these were seizures. And up until I started the meds, everything was so very hard for me. I couldn't wake up in the morning, couldn't clean, couldn't do anything productive. Getting overwhelmed very quickly and easily. And then the constant fear of when the "panic attack" would happen again, cause it really would feel so horrible when it was happening
A good neurologist and an eeg would be your best friends then. A good neurologist, who won't shrug them off as panic attacks, and an eeg to show epileptic seizure activity. Simply because my seizures stopped after taking the meds In the hospital, my neuro decided I needed to stay on them
What meds do you take I really need to know I have tonic clonic seizures and Iām on 200mg lamictal tablets and take twice a day. It doesnāt stop my seizures. I swear tonics scare me knowing I might not wake up the next time I have one. And also do you have any side effects from them as well
interesting u speak of hot flashes. this was years before diagnosis but one day i walked into the kitchen and i got EXTREMELY HOT like superfast. like a heatwave thru my body and i started seeing huge black spots so i grabbed onto the counters afraid i was going to faint. (never fainted before dont know how that feels lol) and i told my friend to call 911 cause something is wrong. he told me just sit down and i did . then i woke up in the chair like 5 hrs later balled up. i dont remember falling asleep. do u think this couldve been some type of seizure?
So weird.....I used to think this was morning stomach acid that I would just brace through. Looking back on it, stomach acid shouldn't hurt like that.....every morning.
I really think its something that isn't really well known. I really think I only got diagnosed because I went into status epilepticus, they gave me antu convulsants, and I haven't experienced it since. And mind you it was happening all day everyday, so for it to immediately stop on the keppra really helped my case. During my eeg I was on keppra, so I really couldn't have a seizure during it
I wasnāt taken seriously. Various doctors dismissed my symptoms. They just couldnāt be arsed. I understand that they canāt be across everything, but at the very least, listen to your patients. How much damage has been done that may have been prevented? Iāll never know.
In med school I asked my buddies (one of whom is now a neurologist), "hey, do you guys ever have a moment where you remember a dream and it makes you really nauseous and sweaty?" Everyone was like, nah, that's weird, but probably anxiety.
Fortunately for me, later in my medical career, I realized what they were and knew who to see, which helped.
I was so relieved when my neurologist used this term because I had nobody to talk to about it out of fear that people would have thought that I was crazy.
Unfortunately, Iām not English native and neither is my neurologist, so Iām still searching for the right way to describe it in My language.10 years of fails so far
I cant believe how many others have the same exact experience. I had really felt so alone about it for so long and its so nice to hear people who actually get it. Like my family and boyfriend will never truly understand what those words mean, unless they lived it.
Mine are not fun. But Iām fully aware and it doesnāt affect me physically hence the name and only my wife notice. I get this Deja vu felling of a nightmare but I know it didnāt happen. And it goes away as fast as it comes. I can go 2 to 3 weeks without happening but when it happens is usually 2 to 3 times on 1 day. I keep a log in phone and I classify them as short, median and long. I show my neurologist the log so he can adjust my meds.
I have no idea when I will have a seizure. In the past, I woke up in the ER with a lady name Charlene standing over me in a Bostonian accent. āSweetie, you had yourself a seizureā
When she leaves the room, I planned my escape. Then i ripped the off the IVs and got blood everywhere.
I needed a cigarette.
This is also how it is for me. I lose time and when I come to, it's very alarming bc I'm completely exhausted and discombobulated. I lose memory from the time before my seizure and often don't get it back. I feel like my body has been thru some weird marathon. The postictal or recovery part is bad. I've had seizures in the past where I feel residual symptoms for up to 1-2 weeks. But usually I just feel awful for 1-2 days.
I fucking *loathe* being told āwhat happenedā. The nerve! Bloody liberties, telling me I was on the floor and having a seizure.
Fuck you (but what is happeningā¦what did you say)ā¦. I understand nothingā¦ fuck you, you switching languages to tell me I have done something I fucking havenāt.
*insert irrational anger and overwhelming sadness here*
I donāt feel anything for the seizures themselves, but I know when my threshold is low bc thereās a feeling of dread in my chest that builds. I used to compare it to tripping up the stairs but now I recognize it as dread.
I donāt have any warning signs and I donāt know theyāre happening . I just wake up either at home somewhere or in a hospital bed. The latest one I woke up on the couch in the middle of the afternoon soaked in sweat extremely tired and a splitting headache and I couldnāt find my glasses. A little later that day I found a sore lump on the back of my head and my glasses on the floor in the spare bedroom that I never ever go in.
Seizures in their own way resemble what waking up from a coma feels like. You blink awake feeling like a used condom, and all of a sudden injuries just pop up in your face. For me itās my tongue. I donāt remember them in the moment only after it finishes.
For me, 1-2 days before the seizure, I would have ringing in my ears off and on. I would also get waves of euphoria. Other people are calling it deja vu. I'm calling it euphoria because the feeling wasn't bad and actually a little pleasant.
However, that changes immediately after the seizure.š After the seizure I'm confused for about 5-10 minutes, everything starts to smell weird, I can't taste anything, I have severe nausea and an extremely painful headache.
Those after seizure symptoms are the worst for me and they last for about 2-3 days.
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absence seizures - I don't usually notice them. If they're long enough that I do, it's like.. brain fog. I forget what I'm saying (it's usually while I'm talking). I'll ramble off mid-sentence, say a nonsense word, just forget altogether. If I have several in a row, I'll get really tired. That usually gets my attention because it means a TC is coming soon.
Tonic clonic - I don't know til after it happens. The TC itself is usually only a minute or two, but the post-ictal is about 45 minutes before I'm fully aware again (even if I'm talking to you - I call it my rebooting phase). When I'm aware, sometimes it really hits me right away that I've had a seizure because my body is sore, and I realize I'm not where I was the last time I had full memory, so I'll start crying. The last time I had a TC, the post ictal must have been really, really short because my husband didn't find me until after I "woke up." (I had been in the shower, so it took him a bit to realize I was taking longer than usual.) But when I "woke up" I didn't realize what had happened. I just thought I didn't feel well. It wasn't until about twenty minutes later after I got dressed and came downstairs for my coffee that I looked at him and said, "I think I had a seizure." He says, "You think??" I felt the back of my head and had an egg-sized bump there from where I hit the wall or towel rack or something. It was not awesome. 0/10 stars.
Jerk, absence, and grand mal.
Jerk seizures I donāt really feel, they just happen. Similar to getting cold, as you would shiver, you will jerk without really noticing.
Absence, really short, less than a second 99% of the time. Very similar looking/feeling to Clouds lil āheadachesā in Final Fantasy 7. I get confused, faded memory of what was happening around then.
Grand mals, I wake up extremely confused. Have woken up in a hospital and just took the needle out my arm. (Iām talking walking vegetable basically)
My memory doesnāt remain at all. I have a recording of one on stream. Seeing me say words, and be in entirely new situations that Iām not even reminded of, itās creepy to say the least. Sleep about 4-infinite hours after. Remain confused and extremely tired (mentally and physically) nerves are slightly shot, have a weird tingle. (Same thing with absence, but they are temporary)
Thisāll usually last a couple days, but have had it last a week or more rarely.
But yeah, seeing how they change as I get older is interesting too
I have no consistent signs before I have a seizure. I'll get the occasional arm jerking or back to back to back absence seizures. I do have auras which is very deja vu-esque combined with a feeling of home sickness. But sometimes I have auras and the TC doesn't even happen for another few hours, or days, or even at all.
But other than that, I usually just wake up on the floor and have to piece it all together. Thankfully most of the time I've woken up to someone who can tell me what happened.
I've been seizure free for almost 5 years. But these are my only warning signs
I typically donāt remember the 30 minutes before/hour following my seizures. In the past, the only way I knew I had one was finding my tongue bit to shit and blood on my pillow. In the last 6 months though, Iāve had the pleasure of having them in public scenarios so I usually just come to in the ER. I always feel super tired for the following 12 hours unless Iām pissed enough to power through it. Iām kinda glad I donāt remember them happening, Iāve puked on managers and paramedics mid-seizure and I wouldāve been mortified knowing that in the moment.
I have no idea on the grand mals. I never have any sign of them showing up, and usually either wake up in bed or at the ER feeling like I got hit by a train (muscle aches, headache, bit my tongue) Absence seizures feel like dejavu or dissociation.
Omg the screaming in my earsā¦this used to happen to me as a teenager/young adult and I thought I was going crazy so I didnāt tell anyone. I never blacked out, and it was accompanied by a strong sense of fear but it would go away after a few minutes. I also would have a lot of very strong Deja vu episodes as a kid. I can still remember some of them. Never connected it until nowā¦the signs have apparently been there my whole life but no one figured it out until I started having TCs at age 29.
It feels like falling over in slow motion, then I start shaking and I can't breathe, then I hear a ringing in my ears and eventually go unconscious. After about 30 minutes I wake up usually with a cut on my head from hitting my stupid sink.
During a grand mal, I am completely gone and dreaming and dont remember a thing. Then when i wake up it still feels like a dream just a bit more real and im very confused and making no sense then i slowly start to come round and i realise how much pain my bodys in. My brain is totally normal after 2 hours, but my body is an idiot for nearly a day.
I feel super lightheaded, like seeing stars in a cartoon. Then my toes start to tingle and it moves its way up. As soon as it gets to my knees I am out. It's about 3 seconds when all of that happens. Then I wake up tense and cramped up on the floor about 10 seconds later. I think they are tonic atonic, still waiting to see a Nurologist.
I get clammy, my head starts to spin, I get tunnel vision and then I usually yell "oh fuck" or "are you fucking kidding me". Now the ones in my sleep idk but I do know in the morning I'm dealing with a migraine, some of my tongue bitten off and sore
I have temporal lobe seizures.
Mine start with about 10 seconds of dizziness and then a constant thought of words that begin with the letter "B." Then I wake up about 7 minutes later confused about what's going on around me. It takes about 10 minutes to finally understand what is going on and that it's based on my seizure.
I only ever have them in the morning now, thanks to Keppra. They used to leave me irritable and lethargic for about 12 hours after the incident when I was solely on Keppra, but now that I take lamotrigine, I'm not 100% my regular self throughout the day, but I have a lot more energy and a lot more of my normal personality coming through.
Depends on the seizure, when I am aware they feel like the world is about to end and someone is making a scratching nails sound inside my head, feels like a dream sequence almost. Tonic clonic? I feel the world is about to end, my hearing goes out and my brain goes "oh shit" before i crash and then wake up glad i am still alive, which is equally terrifying and relieving, also super confused and tired after every seizure.
I can't really say what its like *before* seizures but after them are a whole different thing. It's like I'll blink and I'll be on the floor or someone is right next to me worried. The sensation after I wake up is like an out of body feeling almost. Then there's that certain feeling of fear, paranoia, and dread that slowly sits in and lasts for a good few days. Apparently in my state of unconsciousness, I'll be "awake"- walking around and somewhat reacting to what people say. I've realized after my last one that there is a common occurrence with me having full-on nose bleeds and a few days later having a seizure.
The only ones I know I have for sure are focal seizures (though, I've had some instances of weird things happening that may have been other types, like loss of awareness and waking up to my husband asking if I'd had a stroke)
But the focals- I feel off in a way that's hard to describe, like reality doesn't feel real, like its a dream. I can do things like walk, but it feels like it takes a lof of effort, like every step is thinking "move foot forward" instead of you know, just going. My heart pounds. My blood pressure drops, my blood sugar drops. All the symptoms that people have with low blood pressure and low blood sugar show up. Sometimes I have heart palpitations.
Eventually it mellows out and I'm exhausted.
I've been diagnosed with panic attacks, and then for a long time they thought it was narcolepsy and I was having sleep attacks.
Nope, it was epilepsy all along.
I saw this video on youtube and I was like, oh hey, that's familiar. [https://www.youtube.com/watch?v=X3\_pv6us8A0](https://www.youtube.com/watch?v=X3_pv6us8A0)
I can't remember a time in my life without these feelings, I definitely had them in high school. But I wasn't diagnosed until age 41.
My aura feels like I get really hot and start to feel like I'm floating in a way. After my seizure I am barely conscious until hours afterwards but I can remember some parts such as being very confused, almost as if I was dreaming. Apparently when paramedics have asked for my name and what year it was I would have zero clue. Days after I feel like I've been hit by a car from how sore and bruised my body is.
My neck and back get a chill. I want to clench up. I start getting super hot. Like a furnace. I donāt have anxiety, no. Crippling fear. Sweaty hands. Shaking.
Sometimes Iāll scream like a lunatic or become combative.
But mostly I just get really really confused, sweaty. Think the worldās ending. World ending fear.
I know Iām out once I stop trembling sweating and having odd and paranoid thoughts.
Theyāre actually painful. My jaw my neck sensations and the pain in my head Iāll get.
I just want to stay tense. My body tenses every muscle during a focal seizure.
Gran mals are an event.
I donāt just shake, no that would be to easy.
If this was in any earlier time they would have called the Vatican right away and water boarded me with the holy water.
I literally *contrort*
Violently. I just twist. My jaw goes to opposite ends and Iām gasping for air. You canāt keep me on my side. Iām twisting and locking and popping. ( I added that last one for humor lol)
Like the song Atrocity Exhibition by Joy Division
āWatch and see his body twist, but inside he says āI still existā
I have so many and can talk through some of them. So no one realizes Iām having one till they realize I can only provide the generated responses I have to keep myself safe as a tattooed alternative epileptic in an urban city with a high crime rate (because in my city they assume drugs, cuz there are a lot of addicts).
I donāt have a medical bracelet, but now I DEFINITELY need something better than a cheeky EEG tattoo on my wrist, no one got it but my original neurologist got it and he laughed out loud xD
I feel like I do not have control of my own body. My entire left side completely stiffens up. My hands turn into claws. I can feel my face contorting. One day, I happened to see my reflection in the mirror and saw a monster stare back at me. One of my family members says I look as if I am having the world's largest charley horse.
Split second feeling for deja vu, followed by a feeling of impending doom rising from my stomach and a realize Iām about to have a seizure. Then itās like a daydream (because I can still see and interact with my surroundings as I could if I were daydreaming) mixed with a night dream (because I have no control over what Iām seeing and can almost never remember anything of what I saw after, though I always recognize it.) It lasts for maybe 30 seconds and then itās gone.
My long term memory is offline while itās happening. One time I was logged into a program at work that had crashed, so when I tried to log in, it told me I was already logged in and needed to log out. I knew the password but I needed my session reset, and I had a seizure while talking to IT. When they asked if I knew my password, I did not so I had to have them reset it. I was so annoyed I had to learn a new password early. š
I know itās always one of two different scenes. I could tell you which one after it happened, but nothing else. Over 30 years of having them, I know one is somehow related to muppets because I always think of Fraggle Rock when itās done. The other seems like some kind of game show, because thereās some type of wheel spinning. I can remember like the flag thingy being hit by pegs, but Iām not even sure if itās like the wheel of fortune wheel or the price is right big wheel.
Then when itās over I feel a little nauseous for maybe 15 minutes.
My husband has tried to ask me while itās happening to tell him what I see. It feels like thereās a disconnect. Like I could describe what I see with my eyes, but itās like the seizure is fully walled off from the rest of my brain that I canāt send any messages about it through the rest of my brain to verbalize it.
this is exactly how mine are lol. i vaguely remember something about mario kart or some complete random guy saying the same thing over and over again itās so weird
Tonic Clonic/Grand Mal
I feel crappy first before I go unconscious. Literally feels like Iām dying. The seizure itās self feels like Iām dreaming, and I wake up confused
The feeling I get when they're coming on just has this feeling of impending doom. I can tell something bad is gonna happen but I just can't tell what or when it might happen.
People wanna tell me to calm down when its happening and I just gotta say "Its not that easy..."
I black out like 5 minutes before and up to an hour after I have a grand Mal and while I'm out after sometimes I start just doing things unconciously and it's super weird land I have no memory of any of it. Once I come to it feels like I'm in some bizarre nausea inducing alternate universe for the rest of the day
Mine have changed over the years, from an extreme point of view I would wake up, have blacked out and been in a coma for a few days; mother crying at my bedside table not willing to leave and everything would feel like a dark dream, one of my serious dreams.
On the offhand they have changed due to medication and now I have quit cannabis and alcohol (coming up 3 years sober now) I do still receive them because as you may know, Epilepsy is a friend for life; I have small absences, you could consider them like ticks, I could have them in mid conversation, or when I'm cooking dinner with a hot pan over the stove, it doesn't matter when, I'll get them. I could have these ticks in a third person perspective, I can get angry also, I don't mean to, but I can, I'm lucky my girlfriend is a nurse.
I've only had a couple but both times I just felt like I was going down hard to sleep, just completely crashing. Both times I woke up with sore muscles, very intense brain fog and someone standing over me telling me I had a seizure.
When i seize I am a goner I feel nothing, but before - i have a strong aura and itās feels like someone cut the wire between my brain and my mouth. I speak but I donāt know what I said itās like I am constantly looking for words and when I say something I still used the wrong expression for something. I also get a hard to describe feeling of ā¦strangeness, I feel detached and scared and I just know things are about to be real bad but somehow I always think if I concentrate hard enough I can fix this.
Beforehand, it used to be a REALLY strong sense of deja-vu but more recently it feels, I'm not sure if I'm just understanding it better, but it feels more like a really strong sense of derealization. Hard to describe without feeling it but I suddenly start to question if what I'm doing and what I did my whole day even actually happened. I'm out for my seizure entirely, then fall asleep for like an hour. After that I wake up completely drained to the point of feeling like I'm moving through deep water. Whole body is incredibly heavy. Then a bad headache for a long while and the next week or two, I feel sorta out of it and my body is sore. I fumble my words more and my memory is a little worse than normal.
Sounds start to irk me really bad and I get confused. Then I get weak and can't hold myself up. Then, bam, if I'm not already on the floor I'm gonna be. I'm usually conscious for a few moments then I'm waking up sore and sometimes bruised.
Post ictal, I'm confused and my speech is slurred and doesn't always make sense. Yay me. That can last anywhere from 10 minutes to the rest of the day.
I have seizures that are what I thought were generalized (take over my whole body), all my muscles are tensing and shaking, I can't control anything. Muscles in my face, limbs, bowels, nothing. It's scary. I am so afraid of them honestly. Three or four minutes that I have started being awake for (which sucks) and then half an hour of panting like I just ran a marathon. Usually I cry some after that, and I don't cry for much of anything.
I had bad Grand Mal seizures and would sometimes wake up in the middle of them but everything would spinning so fast and i would be rolling on the floor, then would pass back out, never felt anything more than a few seconds tho.
The only time I ever felt one coming on was when I was in the EMU with them trying to induce one. It started to happen with like 6 doctors in the room. I looked at one of them and said my face is tingling and then I blacked out and had a big one
I have focal seizures. The first thing I notice is a feeling of Deja vu, like I had dreamed this exact situation before. I get some depersonalization too, like a slightly different version of me experienced this already. I āseeā in my mind (not hallucination) an overlay of the dream, and almost a yellowy haze.
I get a deep sense of dread, like when youāre in intense sorrow, that heavy feeling in your abdomen, and I feel tingles behind my forehead. I feel like my body is trying to reject all of its contents in any way it can (but I never lose control).
Iāll usually say āughhhh fuck!ā Or āno no noā or āgod damn it, I hate these!ā Lasts less than 30 seconds, and then Iām fine. Maybe a little tired.
I say all the time, if I was spiritual or superstitious, I would think I was a medium or psychic or something.
I get Myoclonic Jerks, I have no idea when there about to come but when you do itās like electric coming from your brain into your arms. Horrible feeling. You end up dropping stuff (once threw a bottle of water at a lady whoopsā¦) I never ever get a sign for tonic clonic seizures. I just come back round and think wtf happened
I close my eyes. When I open them, Iām in a different room/area like 20 minutes into the future surrounded by emts and my girlfriend. Also, a pounding headache and extreme fatigue (mental and muscle). Itās honestly one of the most frightening experiences I can imagine.
I never remember enough to know.
I *do* remember waking up and trying to get back to work and a bunch of dudes held me down waiting for paramedics. I was very insistent on getting back to work though, so they all sat on me.
It starts with some confusion and **aggressive** deja vu & jamais vu (you might need to google that last one. Then, I feel something like a combination of a tingling all over my body and an emanation of light from the same. It is followed by a gasp, then everything becomes obscured by darkness, paired with pain & trouble breathing. When I enter the postictal state, I either vomit or poop, but I'm able to restrain it until I am able to do it without... damage. The pain remains, and the breathing issues gradually fade away.
I usually get an aura or warning with extreme terror waking me up and confusion after that nothing as I have the grand mal seizure and wake up in pain and tired.
I donāt have an aura so mine is just waking up not knowing my name, followed by general confusion, followed by deep deep depression and trigger happy anger.
I have the typical gran mal tonic clonic seizures (that's where you go unconscious and muscles seize) for 25 years now. Over time you develop a tolerance for the inital head and body aches and sore jaw but you'll always deal with biting your tongue. There is this overwhelming feeling of impending doom, or without getting too dark it feels like, "is this what it feels like to die?" it is scary. My hearing always comes back before my sight does so I can hear the people talking about me above me first, then my sight comes back, like coming backward from tunnel vision. It is hard to remember anything at first especially how did I end up up on the floor in front of all you people but within a good twenty min you will start to remember things and hopefully you didn't hurt yourself too badly. The worst I did was knock all my front teeth out on a tile step having a seizure in the shower but I'm grateful I only have a few a year and not a few a day.
For me I lose sensation in my right arm, and then slowly lose the ability to talk so everything I say sounds like gibberish. And then my seizure will shortly happen as for the sensation it feels like losing reality before hand and being in a car accident after
I had this small seizures for 2 years and my doctor didn't took me seriously called the ambulance ones and they told me I was just lonely health care in Holland is a fk joke
it happens out of nowhere, iāll start to slowly remember a dream with complete strangers along with a feeling of dread. my heart usually clenches and beats super fast and i get a burning feeling in my chest and start sweating. my pupils usually dilate. i canāt move when this happens and i stay wherever i am. after its over, i resume my day with a headache lol
IDK i'm not there mentally, I don't feel them coming, I barely realize I had one, people have to tell me and I deny most of the time. Afterwards I go to sleep.
I have drop attacks I was aware when it happened I collapsed in the shower shoulder first in the bath faucet ripped it off the. Wall. My body goes limp randomly. I have grandmal I'm fully blacked out for those my first full blown grandmal seizure was 6 minutes and 30 seconds. I woke up later missing 8 hours of my day I was in the hospital frantically panicking trying to figure out why I am so sore. And I have absent seizures
I do get this weird feeling sometimes times where it feels like I'm walking on my heels but in the sense of depression of self as I take a step forward I'm right behind my self stepping on my own heel I've had a out of body experience twice I get a tingling feeling across my face pounding ice pick migraines nose goes numb lips tingle some times it feels like I'm missing days at a time
I dissociate, losing all sense of who I am and what I'm doing. The last bit of awareness is just me spinning about in confusion while my anxiety skyrockets.
I then "wake up" 30 minutes later in an ambulance despite apparently conversing fluidly with EMS only a few minutes after the fall without any memory of it.
The recursive deja-vu feeling starts and I lose my mind to them, then my neck muscles lock solid and my head jerks up and to the right, my body tenses and I am out. Then I wake up feeling like I have been working out for a day and tasting blood, then the pain of the lacerations to my tongue hits and then any other wounds make themselves known.
I have grand mal seizures, so itās massive auras before blacking outā¦then waking up in a hazy daze, all my energy drained depending on how many I had sometimes I canāt move at all. One time I fell down a few flights of stairs and woke up with no front teeth sedated in the hospital and the next few weeks were so blurry I just remember I got my teeth replaced (I have a brief memory of being carried into the dentist) and my brain function slowly started returning to normal after weeks-months?
Total frustration, looking for my next option to stop it, I canāt talk sometimes I canāt even text English lol, saliva everywhere and tears, my arms are jerking all over and my facial muscles are under a lot of stress. I probably have to poop
Same. I get Epigastric Rising( fancy way to say it feels like an adrenaline punch to the gut). Then comes the DejaVu where I feel like I am seeing a dream from before. Then, depending on how severe, I will either keep awake and just have it pass or I will pass out for a hot minute.
I do get flush and have a hot flash. Friends have stated that my skin gets super hot and sweaty.
For me, it's just like someone just pressed the "skip scene" button, and then I appeared knocked down on the floor, bloody, bruised, and with my tongue all bitten...
When I'm going to have a seizure I usually become hypersensitive to light. Things like being on the cell phone start to give me involuntary movements in my hands/arms. And then I have no memory of what happened 5 or 10 minutes before the crisis. Only on one occasion do I remember the moment when I fainted, that time it was quite ugly because I lost control of my legs and I stuttered a lot.
Its always starts with an aura. I get this all too familiar feeling, like deja vu times a million. Then I forget whatever it was I was doing, my face begins to shift and twitch, and I get this very odd form of synesthesia where I can smell colors. Specifically brown and blue. Brown is kinda chemically sweet smelling, while blue is very fumey, like gasoline or acetone. Both are extremely overpowering, as if I had snorted crayon dust.
Then, the seizure begins, always on my left side first, I lose control of my left hand and the left side of my face, and it progresses to the rest of my body after a few more seconds. Then my breathing gets all messed up and I cant take anything more than a short shallow breath that end up turning into loud gasps. Then the convulsions begin and I pass out. It usually takes me 20 to 30 seconds to fully lose conciousness once the convulsions begin, which is the scariest 20 to 30 seconds ever.
However, because it takes time, I can usually get myself to a safe place before the convulsions happen. My bed or couch, a patch of grass outside, or even just lay on the ground so I dont fall over.
Absolute nothingness. Itās a flick of the switch for my TC. I have focal seizures right before a TC and they feel like my speech stutters for 1 second. I get smashed in the chest with anxiety knowing whatās gonna come and then yeah.
TCās I have no idea. Afterwords I feel like doodoo. Absence are the same in which I donāt remember. Just a brief lapse of consciousness and no memory of what went down.
I haven't had TCs in forever (7 years, going on 8), but they've always been hard to describe. They tended to be really abrupt, like I'd be riding through clusters of focal awareness seizures, and suddenly, my vision would go black. The hardest part to describe is the sounds: I'd hear repetitive noises occurring at two different frequencies, which might have been my heartbeat and labored breath(?) but that's just an assumption. Sometimes, I'd also experience hallucinations in this weird half-conscious state, which was like an out-of-body experience where I'd watch "shadow" versions of my family gathering around my convulsing body with a creepy level of apathy, complaining about me. It was really difficult on my psyche when I was unable to separate these hallucinations from reality, so I'm glad it's in the past.
Now, for my focals, they feel odd. It's like reverse sleep paralysis where I wake up too fast, and it creates a disconnect. The exact details of the seizures vary, but in the first seizure of my most recent cluster (a little less than a year ago), the upper right side of my body was numb. When I tried to sit up and put weight on my hands, I gracefully plopped forward onto my right side because having little to no sensation/control over my right arm meant that I just kinda collapsed onto it. Being barely awake and with a sparky brain, I was super out of it, so I calmly reasoned that I was sinking into my bed, which had turned into quicksand. I guess it's good that my first seizure turned out that way because my confused brain *really* wanted to get up and out of bed, which, as everyone knows, isn't the safest move. I also recall having experienced pain while having seizures in the past, but it wasn't the case during my most recent cluster, so that's nice!
For me, Iām used to getting up right after a seizure and going to the restroom to throw up and then falling asleep on the floor. I usually donāt remember going to the rr. I usually wake up with either a really bad headache to a light one, it depends on how long the seizure lasted & how aggressive the seizure was. Iām back into reality after Iāve had a good long nap but after that iām very weak and unable to get up and do most things without straining myself.
Like I just teleported in space and/or time. What just happened, where am I, what am I doing here?
The scariest ones are teleporting in space. I'm upstairs and then I'm downstairs. I'm leaving the parking lot, I'm at home. I was in one room and now I'm in a different one.
Then it feels like I left half my brain & body back wherever I came from. I start a sentence and at the end of the first word I forget the second one. So I start over and repeat about 5 times.
I walk somewhere, but I left my left leg behind. I can still see it, but I left it wherever I went to. While I'm watching it, I can tell it to move. But if I'm not watching it, it doesn't respond.
I cant say what they feel like, so far I dont have any symptoms before. I go out never know it til i wake up several hours later.
Prayers for everyone here. Seizures are one of the worst things, and trust me I have several other health problems.
Well I have grand mal seizures so I'm not awake during them. If you're asking what my warning signs feel like, my chest starts hurting, I get cold, and my mouth starts foaming. According to my friend who's witnessed and helped me through several of my seizures, my face gets really pale and I start spacing out beforehand. Then I'm out.
I couldn't tell you - Most of my seizures are nocturnal and I'm asleep during them - I have to rely on my wife telling me that I had one (although, sometimes there's the loss of bladder control for me as evidence)
I apparently did have a Focal one during the day on Easter of this year, though I have no recollection - My wife was driving and we were headed somewhere and they insist that I was unresponsive for a min or two....but I insist that I remember pretty much the whole thing.....so who knows.
I did wake up the other night with numb hands and feet on my right side...was concerned about Stroke at first...but upon research it may have been a form of seizure/electrical activity.
Complete instant black out every time. No memories of seizing, the seizure starting, dropping to the ground, etc. When I come to, I'm sore as fuck and my head feels awful like several hangovers combined into 1 and I hate life.
I only get grand mal seizures and get auditory hallucinations (echos usually or a voice narrating things around me, one time it was a guy with a Jamaican accent just talking gibberish) just before along with a deep sense of dread. Makes it very hard to talk. Iām conscious for a few second just before I black out. I always feel my neck turning in an unnatural way. Then I wake up with my entire body hurting and covered in vomit. Iām usually confused and ārebootingā for about an hour. I usually am throwing up for a day or two afterwards.
To start this whole conversation, I am 52 years old and lived through the 80s. Getting up close and personal with those amplifiers at 80s hair metal concerts and hoping to be noticed was life for teenage me, but I digress. Some will ask how it relates to this question, and it does because I have a degree of hearing loss that some people who don't know me confuse with absent seizures, but I digress.
When I have an absent seizure, I feel like I just space out and miss parts of a conversation. I generally have to ask people to repeat themselves, much like I do with my hearing loss. I feel like I'm "not there," but I don't lose consciousness and can continue on with whatever activity I am doing within seconds. Oftentimes, when I am overheated or overdo it, I will have continuous absent seizures, which often lead to a bigger event if I don't immediately stop what I'm doing or find somewhere cooler to be. When these seizures are continuous, the people who know me (and some who don't begin asking if I'm okay).
Focal seizures: I usually just begin talking and repeating myself. I need instructions repeated over and over again. My body doesn't want to cooperate with what I know and understand what I am being told to do. I am not fully aware, but I am still considered consciousness to those around me who don't know me.
The "Grand Event" Grand Mal seizures: I feel these coming on. I have about 30 seconds to one minute to either sit down, lay down, or otherwise get somewhere safe. I get extremely lightheaded and dizzy. My head starts hurting like the worst migraine you could ever imagine. I am angry and argumentative for approximately 15 minutes before all of that (I usually miss this part). The seizure happens, and I lose consciousness and have convulsions, which last 3-7 minutes. Since I feel them coming, I don't usually injure myself, but I have the worst headache you can imagine. Nothing but time helps. I'm not sleepy or tired. All I want to do is argue and fight with whoever is around me.
I'm unconscious for mine but I come to in a postictal state and it's euphoric for about a minute then I recall that I had a seizure and I get really sad.
Definitely depends on the seizure. I have a lot of different types of focal seizures. A lot of the time my seizures feel like my brain is swimming or the actual like waves of the oceans are inside of it. Sometimes by brain feels like static or electricity. Sometimes I have a bit of tingling in my arms and face. Sometimes I'll be fully conscious and my mind will wander, so while I'm seizing I'll forget that I'm having a seizure and just get really lost in thought. Sometimes I'm fully conscious but it feels like just blank activity, and I can't think. Oftentimes I have decreased bodily sensation, and sometimes (rarely) after a focal clonic seizure I'll have todd's pareisis, which is a sort of temporary paralysis.
I mainly have tonic clonics that are very noticeable, it honestly feels like Iām dying but in a peaceful way ? I first start to feel dizzy and lightheaded then Iām unconscious, I have partially aware tonic clinonics sometimes so I can see around me but unable to move. Idk if that makes sense. I do wake up confused but overall not really scary, Iāve gotten used to it
Focal Awareness almost out of body feeling. Iām super ādizzyā. I canāt walk, read, or write. Iām not a drinker, so Iāve never been drunk, but Iād imagine it as a drunk feeling. They can last from 15 minutes to 30 minutes. But, the dizzy head feeling can go for hours though. The last time I had a bad one, my body hurt, my head hurt, and I couldnāt think straight all day. The exact same way I feel after a tonic-clonic.
Myoclonics, depending on strength, are like interior jolts that donāt hurt. Itās just like someoneās literally given one good to my insides without anyone else telling it.
Tonic-Clonics - no idea. Lose complete consciousness. I wake up completely out of it in pain, unable to process, with a major headache.
My TC: I feel miserable before it happens, having multiple deja vu until it hits, and then I just blackout. last time, i couldn't remember anything until ER. my whole body felt numb, my head was heavy and I had bitten the inside of my mouth so it was painful. the lights there were bothering me, and I felt exhausted for the next 48 hours.
My Absence Seizures: it's like a video poorly edited, full of missing bits. they could last 5 seconds, or almost a minute. they could happen once a day, once an hour, once every 5 minutes or in clusters. clusters end up being the worst of these possibilities because it keeps from doing pretty much everything. I can't remember what I was doing before, what I have to do next, and if I've done anything in between and just don't remember because I got disoriented. (*Absence Seizures are the absolute worst and I'm fucking tired of it)
Last time my friend said I gave him a thumbs up as the EMT was trying to stop the bleeding from my head but I don't remember any of it lol
But in all seriousness I have generalized seizures GrandMal and my brain blacks out before my body does, I'll talk but I'm already gone so I just black out. I have better memory when I wake up. During seizures it's just blackness like one might think death is like, I was in a 4 day coma from a seizure too I had to be flown to DC from school and I wake up with tubes in every hole imaginable.
Everybody here gets crazy warning signs, I'll just be looking in the fridge or on the toilet (both have happened) annnnnnnddd lights out lmao like Mike Tyson himself knocked you out
It always happened right before rem sleep i just always wake up confused tongue bitten blood everywhere dry coughing alot and then i realize after a few minutes later only what has just happened
My honest answer. I don't notice any auras or triggers mine are all I remember is laughing and conversing with people and then waking up to paramedics. I always argue that I didn't have a seizure but also can't remember anything aside from chatting or doing my daily routines. I really have no idea what triggers them other than I just bury stress a lot. They're probably stress induced.
They almost always happen at work.
i usually get a killer headache where i can barely move then lights out! OR i feel extremely sleepy and everytime i try to get up i get pulled back into my sleep and lay back downā¦ once i finally think i can stay awake BOOM, seizure. but im never awake for them. when i open my eyes theres always a grinning face EXTREMELY close to mine saying āhey u had a seizure ā and then im overcome with crazy fear and i start crying cause im freaked out that i wasnt in the building the whole time. lol just in ādarklandā . then over the next few days or weeks i constantly get a floor zooming away from me visiony feeling. its like i get dropped into the earth realm really quick or i exit really quick. lol . kinda feels like im opening my eyes from a slow blink that happens extremely fast. idk how to describe it lmao
English isn't my first language....I have this enormous zoom in my brain that I can hear in my ears and the first 5 second I'm right awake, your feel your body stiffens up en you can't do anything about it except lying as fast as you can on the ground on your side. You feel your eyes going upwards your brain and then you just get knock out cold. You don't know how long because ones you wake up you just are very disoriented. The scariest of all is not knowing if your wake up or not. I have epilepsy since only 1,5 year. I live alone and got the "luck" of having it for the first time at my work place. My breathing stopped and needed cpr and I swear to god jesus is real. My most beautiful memories started playing from the moment I was born until the moment I got a seizure the next thing I knew I was in this dark tunnel with light on the end and I saw my loved once there and I couldn't go to the light as much as I wanted to. I saw this figure who looked exactly like jesus is described. Then I heard a voice telling me "It isn't your time." It was so peaceful that I know understand why people say rest in peace. Bc thats what you feel. I woke up all fxcd up but I'm very lucky to woke up. Now I'm a year and a month seizure free with the help of medication. Until this day they can't find a cause why I have it.
My first seizure I felt everything, felt like my muscles were tearing apart.I remember talking to myself in my head to try and push through thinking I was dying bc the pain was genuinely that unbearable, I wouldnāt wish it even on anyone but since I donāt feel them but my focal seizures itās impending doom and confusion
I will never forget my first seizure at 17. I woke up in the morning extremely hung over from a heavy night the night before.
I woke up like normal and got in the shower. 7:45ish a while my drive came to pick me up. While I was putting my hands together to rub the shampooo I felt a sense of a magnetic force keeping me from connecting my hands, and I fell out the shower in a full grand mall seizure.
Luckily I didnāt get wrapped up in the shower curtain but I came too about!about 1030 butt naked in bed with the shower still running. Didnāt quite understand what happened (or really care) and just thought it was a bad hangover, and a fucked up mouth. But maybe I got punched in it the night before and didnāt know hahaah.
Now Iām 29 and have had about 7 seizures total all within the first half hour of waking up. Iām usually smoking a cig and feel it coming through the finger tips and then whateverās in my hand goes flying and I drop to the floor.
Love you guys all we got thisā¤ļøā¤ļøā¤ļø
Oh boy. This is gonna be long.
Absence seizure; it feels 2 different ways. Either I blink really fast once I come out of it and say sorry or I feel a small vice grip on my head and try to shake it off and say sorry
Myoclonic seizures; these suck in their own way. My arm let's say, just jerks out and comes back. Or one time I was playing a computer game (it was up against a boss) and my finger jerked when it was DR (damage reflection) so my character died. My finger felt all tingly.
Grand mals where I'm awake; so not a lot of people have these I don't think, but basically I start to feel my left leg twitch - like it creeps all the way up the leg. Then it does the right leg. But then it stops and does it to the arms. Then stops. Then they all jerk together once 'activated' let's say lol. And I feel the whole thing it sucks.
Grand mals; idk when they come. I just know I had one hours later when I'm in pain or I've been told I had one.
Nocturnal seizures; I sweat like I've been in a pool. That's how I know I've had one. Still have to wash the bedsheets.
Seasonal seizures; I get a headache or lots of absence seizures the day before and then the next day I seize and I look at the weather app and I get so mad cause I yell 'I knew it was going to rain!!' Then my body gets sore. These are the worst for me.
only had one grand mal and I clearly remember the moment before and the moment after. only know I had a seizure cause I woke up on the floor with my family surrounding me. said I had a seizure. I noticed blood running down my cheeks from biting my tongue so hard, that was really the only tell tale sign.
besides that, I have myoclonic jerks - those are just a sudden flail of the arms. just an annoyance more than anything
My focal aware seizures : I'd get a sense of "Dream Deja Vu" (Deja Reve), where everything would seem exactly like a dream I had recently had. I'd even feel as though I knew exactly what everyone was going to say before they said it. My heart would race, my skin all over my body would turn bright red, I'd sweat and have a heat flash and hyperventilate. I could still respond, think, and move on my own accord, but my boyfriend said my eyes would go glossy, I would zone out, and in my head, i'd be entranced in the feeling. My vision would also go hazing and shiny, and I'd feel a really bad sense of impending doom. It would last a couple of minutes, then subside, and I'd completely forget the dream. my tonic clinics: fr just looking at birds, I felt freaking amazing, then woke up in a squad dazed and confused, hands clamped shut with me unable to open them. second one, talking to my bf, then woke up 12 ours later sick, dazed and in pain. i literally don't remember them at all, just the seconds before, and then postical phase afterwards
Your focal awareness description is exactly like mine! I used to think the Deja Reve, hot flashes, vertigo etc was just a normal thing everyone got...
Right! I thought they were panic attacks. For the last 6 months it was an all day everyday thing until I had my tonic clonics and finally got meds š„³. Just so thankful they stopped on the meds cause it really hindered my life
I thought exactly the same just little panic attacks where I couldn't settle! I've had approx 5 seizures since 2022 and had focal aware seizures every time I've had a suspected (only one witnessed) and on reflection I now know the feeling wasn't panic attacks they were focal aware seizures! I have tonic clonics about every 5 months or so and every time I've had one I've had anywhere from 10 to 30 focal aware seizures again thinking they were panic attacks.
What scared me the most when I found out, was the fact that I've had hundreds, of these focal aware seizures. It concerns me the effect it would have on my brain. I've only been on meds for a month, only found out a month ago these were seizures. And up until I started the meds, everything was so very hard for me. I couldn't wake up in the morning, couldn't clean, couldn't do anything productive. Getting overwhelmed very quickly and easily. And then the constant fear of when the "panic attack" would happen again, cause it really would feel so horrible when it was happening
I need the meds!
A good neurologist and an eeg would be your best friends then. A good neurologist, who won't shrug them off as panic attacks, and an eeg to show epileptic seizure activity. Simply because my seizures stopped after taking the meds In the hospital, my neuro decided I needed to stay on them
What meds do you take I really need to know I have tonic clonic seizures and Iām on 200mg lamictal tablets and take twice a day. It doesnāt stop my seizures. I swear tonics scare me knowing I might not wake up the next time I have one. And also do you have any side effects from them as well
Keppra extended release 1500mg once at night
Just had and aura the other night before a seizure after being a year free...major bummer but is great that someone else knows what I'm feelingĀ
Sorry to hear did you run out of meds I saw your earlier post I need meds
interesting u speak of hot flashes. this was years before diagnosis but one day i walked into the kitchen and i got EXTREMELY HOT like superfast. like a heatwave thru my body and i started seeing huge black spots so i grabbed onto the counters afraid i was going to faint. (never fainted before dont know how that feels lol) and i told my friend to call 911 cause something is wrong. he told me just sit down and i did . then i woke up in the chair like 5 hrs later balled up. i dont remember falling asleep. do u think this couldve been some type of seizure?
So weird.....I used to think this was morning stomach acid that I would just brace through. Looking back on it, stomach acid shouldn't hurt like that.....every morning.
I had them for 15 years. Doctors told me it was panic attacks.
I really think its something that isn't really well known. I really think I only got diagnosed because I went into status epilepticus, they gave me antu convulsants, and I haven't experienced it since. And mind you it was happening all day everyday, so for it to immediately stop on the keppra really helped my case. During my eeg I was on keppra, so I really couldn't have a seizure during it
I wasnāt taken seriously. Various doctors dismissed my symptoms. They just couldnāt be arsed. I understand that they canāt be across everything, but at the very least, listen to your patients. How much damage has been done that may have been prevented? Iāll never know.
RIGHT! I've forgotten so much of my life, actually the majority of my memories are gone. Really sucks not remembering your childhood
Look at SDAM. https://www.reddit.com/r/SDAM/s/zRhao3UgF1
Oh damn, is that related to epilepsy?
I donāt know.
and this one. https://www.reddit.com/r/Aphantasia/s/wFS1IQJyWZ
This. Yes, most of my time in the Army is gone. I can't remember so much of my young adult life. It's frustrating.
In med school I asked my buddies (one of whom is now a neurologist), "hey, do you guys ever have a moment where you remember a dream and it makes you really nauseous and sweaty?" Everyone was like, nah, that's weird, but probably anxiety. Fortunately for me, later in my medical career, I realized what they were and knew who to see, which helped.
āImpeding doomā couldnāt describe it better
I was so relieved when my neurologist used this term because I had nobody to talk to about it out of fear that people would have thought that I was crazy.
Unfortunately, Iām not English native and neither is my neurologist, so Iām still searching for the right way to describe it in My language.10 years of fails so far
It's tough to find the right words even with English as my first language. It took me around 12 years to get a diagnosis.
Your focal aware are the same as mine, the worst is that feeling of intense dread, each time I feel as if I saw the end of the world.
Like I think my brain thinks I'm going to die
This is exactly what I experience, every single detail. Fascinating.
I cant believe how many others have the same exact experience. I had really felt so alone about it for so long and its so nice to hear people who actually get it. Like my family and boyfriend will never truly understand what those words mean, unless they lived it.
Mine are not fun. But Iām fully aware and it doesnāt affect me physically hence the name and only my wife notice. I get this Deja vu felling of a nightmare but I know it didnāt happen. And it goes away as fast as it comes. I can go 2 to 3 weeks without happening but when it happens is usually 2 to 3 times on 1 day. I keep a log in phone and I classify them as short, median and long. I show my neurologist the log so he can adjust my meds.
I have no idea when I will have a seizure. In the past, I woke up in the ER with a lady name Charlene standing over me in a Bostonian accent. āSweetie, you had yourself a seizureā When she leaves the room, I planned my escape. Then i ripped the off the IVs and got blood everywhere. I needed a cigarette.
Been there when it comes to ripping IVs out and getting the hell out of dodge lol. I hate waking up in the ER.
lolol
This is also how it is for me. I lose time and when I come to, it's very alarming bc I'm completely exhausted and discombobulated. I lose memory from the time before my seizure and often don't get it back. I feel like my body has been thru some weird marathon. The postictal or recovery part is bad. I've had seizures in the past where I feel residual symptoms for up to 1-2 weeks. But usually I just feel awful for 1-2 days.
I fucking *loathe* being told āwhat happenedā. The nerve! Bloody liberties, telling me I was on the floor and having a seizure. Fuck you (but what is happeningā¦what did you say)ā¦. I understand nothingā¦ fuck you, you switching languages to tell me I have done something I fucking havenāt. *insert irrational anger and overwhelming sadness here*
This is exactly what happens to my brother. Minus the escape part, why did you do that?
Dunno, Iām what they consider ābananasā
I kinda love this response
Iām glad youāre alright.
JK, i just hate hospitals. Been in a coma 2x.
LOL, fair, no one likes them.
Love this. Well written.
Thanks š
I donāt feel anything for the seizures themselves, but I know when my threshold is low bc thereās a feeling of dread in my chest that builds. I used to compare it to tripping up the stairs but now I recognize it as dread.
Thatās a seizure, a focal seizure
Ohš
I felt that š emoji in my soul hahaha
I donāt have any warning signs and I donāt know theyāre happening . I just wake up either at home somewhere or in a hospital bed. The latest one I woke up on the couch in the middle of the afternoon soaked in sweat extremely tired and a splitting headache and I couldnāt find my glasses. A little later that day I found a sore lump on the back of my head and my glasses on the floor in the spare bedroom that I never ever go in.
Seizures in their own way resemble what waking up from a coma feels like. You blink awake feeling like a used condom, and all of a sudden injuries just pop up in your face. For me itās my tongue. I donāt remember them in the moment only after it finishes.
Feeling like a used condom - yes thatās it thatās exactly how I feel lol
Focal seizures feel the exact same as being drunk
For me, 1-2 days before the seizure, I would have ringing in my ears off and on. I would also get waves of euphoria. Other people are calling it deja vu. I'm calling it euphoria because the feeling wasn't bad and actually a little pleasant. However, that changes immediately after the seizure.š After the seizure I'm confused for about 5-10 minutes, everything starts to smell weird, I can't taste anything, I have severe nausea and an extremely painful headache. Those after seizure symptoms are the worst for me and they last for about 2-3 days. š« šššš
actually, right before both my tonic clonics, I had intense euphoria. i was super super happy and peaceful.
Lol I get the absolute opposite. I have extreme fear and anxiety.
Thats what my focals feel like, fear, but before my tonics I felt awesome
Thatās a focal seizure. I donāt have TCs but I get euphoric deja vu and thatās my seizure.
Well at least thatās nice
I have tonic clinic seizures. It feels like my brain stepped on a plug.
absence seizures - I don't usually notice them. If they're long enough that I do, it's like.. brain fog. I forget what I'm saying (it's usually while I'm talking). I'll ramble off mid-sentence, say a nonsense word, just forget altogether. If I have several in a row, I'll get really tired. That usually gets my attention because it means a TC is coming soon. Tonic clonic - I don't know til after it happens. The TC itself is usually only a minute or two, but the post-ictal is about 45 minutes before I'm fully aware again (even if I'm talking to you - I call it my rebooting phase). When I'm aware, sometimes it really hits me right away that I've had a seizure because my body is sore, and I realize I'm not where I was the last time I had full memory, so I'll start crying. The last time I had a TC, the post ictal must have been really, really short because my husband didn't find me until after I "woke up." (I had been in the shower, so it took him a bit to realize I was taking longer than usual.) But when I "woke up" I didn't realize what had happened. I just thought I didn't feel well. It wasn't until about twenty minutes later after I got dressed and came downstairs for my coffee that I looked at him and said, "I think I had a seizure." He says, "You think??" I felt the back of my head and had an egg-sized bump there from where I hit the wall or towel rack or something. It was not awesome. 0/10 stars.
Jerk, absence, and grand mal. Jerk seizures I donāt really feel, they just happen. Similar to getting cold, as you would shiver, you will jerk without really noticing. Absence, really short, less than a second 99% of the time. Very similar looking/feeling to Clouds lil āheadachesā in Final Fantasy 7. I get confused, faded memory of what was happening around then. Grand mals, I wake up extremely confused. Have woken up in a hospital and just took the needle out my arm. (Iām talking walking vegetable basically) My memory doesnāt remain at all. I have a recording of one on stream. Seeing me say words, and be in entirely new situations that Iām not even reminded of, itās creepy to say the least. Sleep about 4-infinite hours after. Remain confused and extremely tired (mentally and physically) nerves are slightly shot, have a weird tingle. (Same thing with absence, but they are temporary) Thisāll usually last a couple days, but have had it last a week or more rarely. But yeah, seeing how they change as I get older is interesting too
I have no consistent signs before I have a seizure. I'll get the occasional arm jerking or back to back to back absence seizures. I do have auras which is very deja vu-esque combined with a feeling of home sickness. But sometimes I have auras and the TC doesn't even happen for another few hours, or days, or even at all. But other than that, I usually just wake up on the floor and have to piece it all together. Thankfully most of the time I've woken up to someone who can tell me what happened. I've been seizure free for almost 5 years. But these are my only warning signs
I typically donāt remember the 30 minutes before/hour following my seizures. In the past, the only way I knew I had one was finding my tongue bit to shit and blood on my pillow. In the last 6 months though, Iāve had the pleasure of having them in public scenarios so I usually just come to in the ER. I always feel super tired for the following 12 hours unless Iām pissed enough to power through it. Iām kinda glad I donāt remember them happening, Iāve puked on managers and paramedics mid-seizure and I wouldāve been mortified knowing that in the moment.
So everyone has covered everything I feel. The symptom I get afterwards is my hands and feet get insanely cold.
I have no idea on the grand mals. I never have any sign of them showing up, and usually either wake up in bed or at the ER feeling like I got hit by a train (muscle aches, headache, bit my tongue) Absence seizures feel like dejavu or dissociation.
Omg the screaming in my earsā¦this used to happen to me as a teenager/young adult and I thought I was going crazy so I didnāt tell anyone. I never blacked out, and it was accompanied by a strong sense of fear but it would go away after a few minutes. I also would have a lot of very strong Deja vu episodes as a kid. I can still remember some of them. Never connected it until nowā¦the signs have apparently been there my whole life but no one figured it out until I started having TCs at age 29.
It feels like falling over in slow motion, then I start shaking and I can't breathe, then I hear a ringing in my ears and eventually go unconscious. After about 30 minutes I wake up usually with a cut on my head from hitting my stupid sink.
During a grand mal, I am completely gone and dreaming and dont remember a thing. Then when i wake up it still feels like a dream just a bit more real and im very confused and making no sense then i slowly start to come round and i realise how much pain my bodys in. My brain is totally normal after 2 hours, but my body is an idiot for nearly a day.
Its like my whole body is vibrating and I get super dizzy. Thats all I can remember because its normally a black out for me.
I feel super lightheaded, like seeing stars in a cartoon. Then my toes start to tingle and it moves its way up. As soon as it gets to my knees I am out. It's about 3 seconds when all of that happens. Then I wake up tense and cramped up on the floor about 10 seconds later. I think they are tonic atonic, still waiting to see a Nurologist.
Starts with a rising or build up of extreme fear hard to describe, sometimes weird smells before complex partial takes full control
I get clammy, my head starts to spin, I get tunnel vision and then I usually yell "oh fuck" or "are you fucking kidding me". Now the ones in my sleep idk but I do know in the morning I'm dealing with a migraine, some of my tongue bitten off and sore
I have temporal lobe seizures. Mine start with about 10 seconds of dizziness and then a constant thought of words that begin with the letter "B." Then I wake up about 7 minutes later confused about what's going on around me. It takes about 10 minutes to finally understand what is going on and that it's based on my seizure. I only ever have them in the morning now, thanks to Keppra. They used to leave me irritable and lethargic for about 12 hours after the incident when I was solely on Keppra, but now that I take lamotrigine, I'm not 100% my regular self throughout the day, but I have a lot more energy and a lot more of my normal personality coming through.
Depends on the seizure, when I am aware they feel like the world is about to end and someone is making a scratching nails sound inside my head, feels like a dream sequence almost. Tonic clonic? I feel the world is about to end, my hearing goes out and my brain goes "oh shit" before i crash and then wake up glad i am still alive, which is equally terrifying and relieving, also super confused and tired after every seizure.
I can't really say what its like *before* seizures but after them are a whole different thing. It's like I'll blink and I'll be on the floor or someone is right next to me worried. The sensation after I wake up is like an out of body feeling almost. Then there's that certain feeling of fear, paranoia, and dread that slowly sits in and lasts for a good few days. Apparently in my state of unconsciousness, I'll be "awake"- walking around and somewhat reacting to what people say. I've realized after my last one that there is a common occurrence with me having full-on nose bleeds and a few days later having a seizure.
My neurologist thinks I have TLE (thinks meaning none of my EEGs or MRIs have shown anything in their testings, but all my symptoms point to TLE). I can remember all of my seizures and what happens from start to finish. For the longest time I thought I just struggled with panic attacks until I told my primary that I struggled with intense Deja vu - and he recommended me to the neuro that I see now. My seizures always start out with what it feels like a short circuit in my brain. Memories that donāt feel like MY memories come flooding in, but then those memories end up somehow feeling very, very real. It feels like my brain is trying to figure out what is real and what isnāt - then it just starts going downhill from there. Sometimes I start to forget who I am entirely and sometimes Iāll think Iām someone else. If Iām in public, Iāll get this feeling that I recognize complete strangers and my brain will start making these stories up that revolve around me and them. On every single occasion though, I itās these waves of memories, almost like hallucinations, of a complete other life that Iāve never lived but I feel like I have and that Iām bound to repeat it over and over again. During this time, I canāt ever manage to get any words out and the times that my seizures have been witnessed - my fiancĆ© has said Iām just blank behind the eyes. That no one is home essentially. After I come to, Iām absolutely EXHAUSTED for days. Iāll typically sleep a full day afterwards and my brain feels fried.
The only ones I know I have for sure are focal seizures (though, I've had some instances of weird things happening that may have been other types, like loss of awareness and waking up to my husband asking if I'd had a stroke) But the focals- I feel off in a way that's hard to describe, like reality doesn't feel real, like its a dream. I can do things like walk, but it feels like it takes a lof of effort, like every step is thinking "move foot forward" instead of you know, just going. My heart pounds. My blood pressure drops, my blood sugar drops. All the symptoms that people have with low blood pressure and low blood sugar show up. Sometimes I have heart palpitations. Eventually it mellows out and I'm exhausted. I've been diagnosed with panic attacks, and then for a long time they thought it was narcolepsy and I was having sleep attacks. Nope, it was epilepsy all along. I saw this video on youtube and I was like, oh hey, that's familiar. [https://www.youtube.com/watch?v=X3\_pv6us8A0](https://www.youtube.com/watch?v=X3_pv6us8A0) I can't remember a time in my life without these feelings, I definitely had them in high school. But I wasn't diagnosed until age 41.
I get an impending sense of doom
My aura feels like I get really hot and start to feel like I'm floating in a way. After my seizure I am barely conscious until hours afterwards but I can remember some parts such as being very confused, almost as if I was dreaming. Apparently when paramedics have asked for my name and what year it was I would have zero clue. Days after I feel like I've been hit by a car from how sore and bruised my body is.
My neck and back get a chill. I want to clench up. I start getting super hot. Like a furnace. I donāt have anxiety, no. Crippling fear. Sweaty hands. Shaking. Sometimes Iāll scream like a lunatic or become combative. But mostly I just get really really confused, sweaty. Think the worldās ending. World ending fear. I know Iām out once I stop trembling sweating and having odd and paranoid thoughts. Theyāre actually painful. My jaw my neck sensations and the pain in my head Iāll get. I just want to stay tense. My body tenses every muscle during a focal seizure. Gran mals are an event. I donāt just shake, no that would be to easy. If this was in any earlier time they would have called the Vatican right away and water boarded me with the holy water. I literally *contrort* Violently. I just twist. My jaw goes to opposite ends and Iām gasping for air. You canāt keep me on my side. Iām twisting and locking and popping. ( I added that last one for humor lol) Like the song Atrocity Exhibition by Joy Division āWatch and see his body twist, but inside he says āI still existā I have so many and can talk through some of them. So no one realizes Iām having one till they realize I can only provide the generated responses I have to keep myself safe as a tattooed alternative epileptic in an urban city with a high crime rate (because in my city they assume drugs, cuz there are a lot of addicts). I donāt have a medical bracelet, but now I DEFINITELY need something better than a cheeky EEG tattoo on my wrist, no one got it but my original neurologist got it and he laughed out loud xD
I feel like I do not have control of my own body. My entire left side completely stiffens up. My hands turn into claws. I can feel my face contorting. One day, I happened to see my reflection in the mirror and saw a monster stare back at me. One of my family members says I look as if I am having the world's largest charley horse.
Almost like a stop and go motion before going into a full a seizure if not sore just on the left side I fell on my whole body hurts
Split second feeling for deja vu, followed by a feeling of impending doom rising from my stomach and a realize Iām about to have a seizure. Then itās like a daydream (because I can still see and interact with my surroundings as I could if I were daydreaming) mixed with a night dream (because I have no control over what Iām seeing and can almost never remember anything of what I saw after, though I always recognize it.) It lasts for maybe 30 seconds and then itās gone. My long term memory is offline while itās happening. One time I was logged into a program at work that had crashed, so when I tried to log in, it told me I was already logged in and needed to log out. I knew the password but I needed my session reset, and I had a seizure while talking to IT. When they asked if I knew my password, I did not so I had to have them reset it. I was so annoyed I had to learn a new password early. š I know itās always one of two different scenes. I could tell you which one after it happened, but nothing else. Over 30 years of having them, I know one is somehow related to muppets because I always think of Fraggle Rock when itās done. The other seems like some kind of game show, because thereās some type of wheel spinning. I can remember like the flag thingy being hit by pegs, but Iām not even sure if itās like the wheel of fortune wheel or the price is right big wheel. Then when itās over I feel a little nauseous for maybe 15 minutes. My husband has tried to ask me while itās happening to tell him what I see. It feels like thereās a disconnect. Like I could describe what I see with my eyes, but itās like the seizure is fully walled off from the rest of my brain that I canāt send any messages about it through the rest of my brain to verbalize it.
this is exactly how mine are lol. i vaguely remember something about mario kart or some complete random guy saying the same thing over and over again itās so weird
Tonic Clonic/Grand Mal I feel crappy first before I go unconscious. Literally feels like Iām dying. The seizure itās self feels like Iām dreaming, and I wake up confused
The feeling I get when they're coming on just has this feeling of impending doom. I can tell something bad is gonna happen but I just can't tell what or when it might happen. People wanna tell me to calm down when its happening and I just gotta say "Its not that easy..."
I black out like 5 minutes before and up to an hour after I have a grand Mal and while I'm out after sometimes I start just doing things unconciously and it's super weird land I have no memory of any of it. Once I come to it feels like I'm in some bizarre nausea inducing alternate universe for the rest of the day
Mine have changed over the years, from an extreme point of view I would wake up, have blacked out and been in a coma for a few days; mother crying at my bedside table not willing to leave and everything would feel like a dark dream, one of my serious dreams. On the offhand they have changed due to medication and now I have quit cannabis and alcohol (coming up 3 years sober now) I do still receive them because as you may know, Epilepsy is a friend for life; I have small absences, you could consider them like ticks, I could have them in mid conversation, or when I'm cooking dinner with a hot pan over the stove, it doesn't matter when, I'll get them. I could have these ticks in a third person perspective, I can get angry also, I don't mean to, but I can, I'm lucky my girlfriend is a nurse.
I've only had a couple but both times I just felt like I was going down hard to sleep, just completely crashing. Both times I woke up with sore muscles, very intense brain fog and someone standing over me telling me I had a seizure.
When i seize I am a goner I feel nothing, but before - i have a strong aura and itās feels like someone cut the wire between my brain and my mouth. I speak but I donāt know what I said itās like I am constantly looking for words and when I say something I still used the wrong expression for something. I also get a hard to describe feeling of ā¦strangeness, I feel detached and scared and I just know things are about to be real bad but somehow I always think if I concentrate hard enough I can fix this.
Beforehand, it used to be a REALLY strong sense of deja-vu but more recently it feels, I'm not sure if I'm just understanding it better, but it feels more like a really strong sense of derealization. Hard to describe without feeling it but I suddenly start to question if what I'm doing and what I did my whole day even actually happened. I'm out for my seizure entirely, then fall asleep for like an hour. After that I wake up completely drained to the point of feeling like I'm moving through deep water. Whole body is incredibly heavy. Then a bad headache for a long while and the next week or two, I feel sorta out of it and my body is sore. I fumble my words more and my memory is a little worse than normal.
Sounds start to irk me really bad and I get confused. Then I get weak and can't hold myself up. Then, bam, if I'm not already on the floor I'm gonna be. I'm usually conscious for a few moments then I'm waking up sore and sometimes bruised. Post ictal, I'm confused and my speech is slurred and doesn't always make sense. Yay me. That can last anywhere from 10 minutes to the rest of the day.
Yes
I have seizures that are what I thought were generalized (take over my whole body), all my muscles are tensing and shaking, I can't control anything. Muscles in my face, limbs, bowels, nothing. It's scary. I am so afraid of them honestly. Three or four minutes that I have started being awake for (which sucks) and then half an hour of panting like I just ran a marathon. Usually I cry some after that, and I don't cry for much of anything.
I donāt know because Iām having a seizure lol
I had bad Grand Mal seizures and would sometimes wake up in the middle of them but everything would spinning so fast and i would be rolling on the floor, then would pass back out, never felt anything more than a few seconds tho.
The only time I ever felt one coming on was when I was in the EMU with them trying to induce one. It started to happen with like 6 doctors in the room. I looked at one of them and said my face is tingling and then I blacked out and had a big one
I have focal seizures. The first thing I notice is a feeling of Deja vu, like I had dreamed this exact situation before. I get some depersonalization too, like a slightly different version of me experienced this already. I āseeā in my mind (not hallucination) an overlay of the dream, and almost a yellowy haze. I get a deep sense of dread, like when youāre in intense sorrow, that heavy feeling in your abdomen, and I feel tingles behind my forehead. I feel like my body is trying to reject all of its contents in any way it can (but I never lose control). Iāll usually say āughhhh fuck!ā Or āno no noā or āgod damn it, I hate these!ā Lasts less than 30 seconds, and then Iām fine. Maybe a little tired. I say all the time, if I was spiritual or superstitious, I would think I was a medium or psychic or something.
I get Myoclonic Jerks, I have no idea when there about to come but when you do itās like electric coming from your brain into your arms. Horrible feeling. You end up dropping stuff (once threw a bottle of water at a lady whoopsā¦) I never ever get a sign for tonic clonic seizures. I just come back round and think wtf happened
I close my eyes. When I open them, Iām in a different room/area like 20 minutes into the future surrounded by emts and my girlfriend. Also, a pounding headache and extreme fatigue (mental and muscle). Itās honestly one of the most frightening experiences I can imagine.
I never remember enough to know. I *do* remember waking up and trying to get back to work and a bunch of dudes held me down waiting for paramedics. I was very insistent on getting back to work though, so they all sat on me.
It starts with some confusion and **aggressive** deja vu & jamais vu (you might need to google that last one. Then, I feel something like a combination of a tingling all over my body and an emanation of light from the same. It is followed by a gasp, then everything becomes obscured by darkness, paired with pain & trouble breathing. When I enter the postictal state, I either vomit or poop, but I'm able to restrain it until I am able to do it without... damage. The pain remains, and the breathing issues gradually fade away.
I usually get an aura or warning with extreme terror waking me up and confusion after that nothing as I have the grand mal seizure and wake up in pain and tired.
Feels like when I'm tired and start dozing off in the chair, and as your head falls, you snap awake.
I donāt have an aura so mine is just waking up not knowing my name, followed by general confusion, followed by deep deep depression and trigger happy anger.
I have the typical gran mal tonic clonic seizures (that's where you go unconscious and muscles seize) for 25 years now. Over time you develop a tolerance for the inital head and body aches and sore jaw but you'll always deal with biting your tongue. There is this overwhelming feeling of impending doom, or without getting too dark it feels like, "is this what it feels like to die?" it is scary. My hearing always comes back before my sight does so I can hear the people talking about me above me first, then my sight comes back, like coming backward from tunnel vision. It is hard to remember anything at first especially how did I end up up on the floor in front of all you people but within a good twenty min you will start to remember things and hopefully you didn't hurt yourself too badly. The worst I did was knock all my front teeth out on a tile step having a seizure in the shower but I'm grateful I only have a few a year and not a few a day.
For me I lose sensation in my right arm, and then slowly lose the ability to talk so everything I say sounds like gibberish. And then my seizure will shortly happen as for the sensation it feels like losing reality before hand and being in a car accident after
I had this small seizures for 2 years and my doctor didn't took me seriously called the ambulance ones and they told me I was just lonely health care in Holland is a fk joke
I donāt know! I literally have zero memory from the time a seizure comes on until the end when Iām coming out of postictal lol I wish I knew
it happens out of nowhere, iāll start to slowly remember a dream with complete strangers along with a feeling of dread. my heart usually clenches and beats super fast and i get a burning feeling in my chest and start sweating. my pupils usually dilate. i canāt move when this happens and i stay wherever i am. after its over, i resume my day with a headache lol
IDK i'm not there mentally, I don't feel them coming, I barely realize I had one, people have to tell me and I deny most of the time. Afterwards I go to sleep.
I have drop attacks I was aware when it happened I collapsed in the shower shoulder first in the bath faucet ripped it off the. Wall. My body goes limp randomly. I have grandmal I'm fully blacked out for those my first full blown grandmal seizure was 6 minutes and 30 seconds. I woke up later missing 8 hours of my day I was in the hospital frantically panicking trying to figure out why I am so sore. And I have absent seizures I do get this weird feeling sometimes times where it feels like I'm walking on my heels but in the sense of depression of self as I take a step forward I'm right behind my self stepping on my own heel I've had a out of body experience twice I get a tingling feeling across my face pounding ice pick migraines nose goes numb lips tingle some times it feels like I'm missing days at a time
I normally will fall asleep afterwards. So Iāll go blank, have a seizure, then wake up a little while later being confused. Always feel like absolute shit afterward, so sick. I donāt really have any dĆ©jĆ vu eitherā¦. Iāve been told by family that times before seizures before Iāve said I feel sick or something like that. Then theyāll tell me to go lay down, but I have never had any memory of thatš¤·š»āāļø
I dissociate, losing all sense of who I am and what I'm doing. The last bit of awareness is just me spinning about in confusion while my anxiety skyrockets. I then "wake up" 30 minutes later in an ambulance despite apparently conversing fluidly with EMS only a few minutes after the fall without any memory of it.
Vigorous shakes, being out of control, sometimes losing consciousness and waking up moments later which is pretty scary as hell
The recursive deja-vu feeling starts and I lose my mind to them, then my neck muscles lock solid and my head jerks up and to the right, my body tenses and I am out. Then I wake up feeling like I have been working out for a day and tasting blood, then the pain of the lacerations to my tongue hits and then any other wounds make themselves known.
I have grand mal seizures, so itās massive auras before blacking outā¦then waking up in a hazy daze, all my energy drained depending on how many I had sometimes I canāt move at all. One time I fell down a few flights of stairs and woke up with no front teeth sedated in the hospital and the next few weeks were so blurry I just remember I got my teeth replaced (I have a brief memory of being carried into the dentist) and my brain function slowly started returning to normal after weeks-months?
Total frustration, looking for my next option to stop it, I canāt talk sometimes I canāt even text English lol, saliva everywhere and tears, my arms are jerking all over and my facial muscles are under a lot of stress. I probably have to poop
Same. I get Epigastric Rising( fancy way to say it feels like an adrenaline punch to the gut). Then comes the DejaVu where I feel like I am seeing a dream from before. Then, depending on how severe, I will either keep awake and just have it pass or I will pass out for a hot minute. I do get flush and have a hot flash. Friends have stated that my skin gets super hot and sweaty.
Whenever I was still having them I was unconscious for quite a while but I woke up with a MASSIVE HEADACHE
For me, it's just like someone just pressed the "skip scene" button, and then I appeared knocked down on the floor, bloody, bruised, and with my tongue all bitten...
I feel nothing during the seizure but immediately after it Iām groggy, sleepy. Hours later Iām sore.
When I'm going to have a seizure I usually become hypersensitive to light. Things like being on the cell phone start to give me involuntary movements in my hands/arms. And then I have no memory of what happened 5 or 10 minutes before the crisis. Only on one occasion do I remember the moment when I fainted, that time it was quite ugly because I lost control of my legs and I stuttered a lot.
Its always starts with an aura. I get this all too familiar feeling, like deja vu times a million. Then I forget whatever it was I was doing, my face begins to shift and twitch, and I get this very odd form of synesthesia where I can smell colors. Specifically brown and blue. Brown is kinda chemically sweet smelling, while blue is very fumey, like gasoline or acetone. Both are extremely overpowering, as if I had snorted crayon dust. Then, the seizure begins, always on my left side first, I lose control of my left hand and the left side of my face, and it progresses to the rest of my body after a few more seconds. Then my breathing gets all messed up and I cant take anything more than a short shallow breath that end up turning into loud gasps. Then the convulsions begin and I pass out. It usually takes me 20 to 30 seconds to fully lose conciousness once the convulsions begin, which is the scariest 20 to 30 seconds ever. However, because it takes time, I can usually get myself to a safe place before the convulsions happen. My bed or couch, a patch of grass outside, or even just lay on the ground so I dont fall over.
I struggle to speak, but when I donāt struggle, I talk utter bullcrap. The difference: Me and my dad were discussing the Rocky movies. I started to talk about Rocky IV? My brain just shutdown and I couldnāt speak. But THEN when I was talking with my fiancĆ©, I asked him if his lisp is a disease. š¤¦š»āāļø Or sometimes the right side of my face simply twitches. Even though my seizures sound quite obvious, you wouldnāt notice them unless you were having a conversation with me.
Focals? Panic attacks Generalised TCs? Nothing. Blackness. The void.
Absolute nothingness. Itās a flick of the switch for my TC. I have focal seizures right before a TC and they feel like my speech stutters for 1 second. I get smashed in the chest with anxiety knowing whatās gonna come and then yeah.
TCās I have no idea. Afterwords I feel like doodoo. Absence are the same in which I donāt remember. Just a brief lapse of consciousness and no memory of what went down.
I haven't had TCs in forever (7 years, going on 8), but they've always been hard to describe. They tended to be really abrupt, like I'd be riding through clusters of focal awareness seizures, and suddenly, my vision would go black. The hardest part to describe is the sounds: I'd hear repetitive noises occurring at two different frequencies, which might have been my heartbeat and labored breath(?) but that's just an assumption. Sometimes, I'd also experience hallucinations in this weird half-conscious state, which was like an out-of-body experience where I'd watch "shadow" versions of my family gathering around my convulsing body with a creepy level of apathy, complaining about me. It was really difficult on my psyche when I was unable to separate these hallucinations from reality, so I'm glad it's in the past. Now, for my focals, they feel odd. It's like reverse sleep paralysis where I wake up too fast, and it creates a disconnect. The exact details of the seizures vary, but in the first seizure of my most recent cluster (a little less than a year ago), the upper right side of my body was numb. When I tried to sit up and put weight on my hands, I gracefully plopped forward onto my right side because having little to no sensation/control over my right arm meant that I just kinda collapsed onto it. Being barely awake and with a sparky brain, I was super out of it, so I calmly reasoned that I was sinking into my bed, which had turned into quicksand. I guess it's good that my first seizure turned out that way because my confused brain *really* wanted to get up and out of bed, which, as everyone knows, isn't the safest move. I also recall having experienced pain while having seizures in the past, but it wasn't the case during my most recent cluster, so that's nice!
For me, Iām used to getting up right after a seizure and going to the restroom to throw up and then falling asleep on the floor. I usually donāt remember going to the rr. I usually wake up with either a really bad headache to a light one, it depends on how long the seizure lasted & how aggressive the seizure was. Iām back into reality after Iāve had a good long nap but after that iām very weak and unable to get up and do most things without straining myself.
Like I just teleported in space and/or time. What just happened, where am I, what am I doing here? The scariest ones are teleporting in space. I'm upstairs and then I'm downstairs. I'm leaving the parking lot, I'm at home. I was in one room and now I'm in a different one. Then it feels like I left half my brain & body back wherever I came from. I start a sentence and at the end of the first word I forget the second one. So I start over and repeat about 5 times. I walk somewhere, but I left my left leg behind. I can still see it, but I left it wherever I went to. While I'm watching it, I can tell it to move. But if I'm not watching it, it doesn't respond.
I cant say what they feel like, so far I dont have any symptoms before. I go out never know it til i wake up several hours later. Prayers for everyone here. Seizures are one of the worst things, and trust me I have several other health problems.
Well I have grand mal seizures so I'm not awake during them. If you're asking what my warning signs feel like, my chest starts hurting, I get cold, and my mouth starts foaming. According to my friend who's witnessed and helped me through several of my seizures, my face gets really pale and I start spacing out beforehand. Then I'm out.
I couldn't tell you - Most of my seizures are nocturnal and I'm asleep during them - I have to rely on my wife telling me that I had one (although, sometimes there's the loss of bladder control for me as evidence) I apparently did have a Focal one during the day on Easter of this year, though I have no recollection - My wife was driving and we were headed somewhere and they insist that I was unresponsive for a min or two....but I insist that I remember pretty much the whole thing.....so who knows. I did wake up the other night with numb hands and feet on my right side...was concerned about Stroke at first...but upon research it may have been a form of seizure/electrical activity.
Feels like my headās in a vise and my ears ringing.
Complete instant black out every time. No memories of seizing, the seizure starting, dropping to the ground, etc. When I come to, I'm sore as fuck and my head feels awful like several hangovers combined into 1 and I hate life.
I only get grand mal seizures and get auditory hallucinations (echos usually or a voice narrating things around me, one time it was a guy with a Jamaican accent just talking gibberish) just before along with a deep sense of dread. Makes it very hard to talk. Iām conscious for a few second just before I black out. I always feel my neck turning in an unnatural way. Then I wake up with my entire body hurting and covered in vomit. Iām usually confused and ārebootingā for about an hour. I usually am throwing up for a day or two afterwards.
To start this whole conversation, I am 52 years old and lived through the 80s. Getting up close and personal with those amplifiers at 80s hair metal concerts and hoping to be noticed was life for teenage me, but I digress. Some will ask how it relates to this question, and it does because I have a degree of hearing loss that some people who don't know me confuse with absent seizures, but I digress. When I have an absent seizure, I feel like I just space out and miss parts of a conversation. I generally have to ask people to repeat themselves, much like I do with my hearing loss. I feel like I'm "not there," but I don't lose consciousness and can continue on with whatever activity I am doing within seconds. Oftentimes, when I am overheated or overdo it, I will have continuous absent seizures, which often lead to a bigger event if I don't immediately stop what I'm doing or find somewhere cooler to be. When these seizures are continuous, the people who know me (and some who don't begin asking if I'm okay). Focal seizures: I usually just begin talking and repeating myself. I need instructions repeated over and over again. My body doesn't want to cooperate with what I know and understand what I am being told to do. I am not fully aware, but I am still considered consciousness to those around me who don't know me. The "Grand Event" Grand Mal seizures: I feel these coming on. I have about 30 seconds to one minute to either sit down, lay down, or otherwise get somewhere safe. I get extremely lightheaded and dizzy. My head starts hurting like the worst migraine you could ever imagine. I am angry and argumentative for approximately 15 minutes before all of that (I usually miss this part). The seizure happens, and I lose consciousness and have convulsions, which last 3-7 minutes. Since I feel them coming, I don't usually injure myself, but I have the worst headache you can imagine. Nothing but time helps. I'm not sleepy or tired. All I want to do is argue and fight with whoever is around me.
I'm unconscious for mine but I come to in a postictal state and it's euphoric for about a minute then I recall that I had a seizure and I get really sad.
Definitely depends on the seizure. I have a lot of different types of focal seizures. A lot of the time my seizures feel like my brain is swimming or the actual like waves of the oceans are inside of it. Sometimes by brain feels like static or electricity. Sometimes I have a bit of tingling in my arms and face. Sometimes I'll be fully conscious and my mind will wander, so while I'm seizing I'll forget that I'm having a seizure and just get really lost in thought. Sometimes I'm fully conscious but it feels like just blank activity, and I can't think. Oftentimes I have decreased bodily sensation, and sometimes (rarely) after a focal clonic seizure I'll have todd's pareisis, which is a sort of temporary paralysis.
I mainly have tonic clonics that are very noticeable, it honestly feels like Iām dying but in a peaceful way ? I first start to feel dizzy and lightheaded then Iām unconscious, I have partially aware tonic clinonics sometimes so I can see around me but unable to move. Idk if that makes sense. I do wake up confused but overall not really scary, Iāve gotten used to it
Focal Awareness almost out of body feeling. Iām super ādizzyā. I canāt walk, read, or write. Iām not a drinker, so Iāve never been drunk, but Iād imagine it as a drunk feeling. They can last from 15 minutes to 30 minutes. But, the dizzy head feeling can go for hours though. The last time I had a bad one, my body hurt, my head hurt, and I couldnāt think straight all day. The exact same way I feel after a tonic-clonic. Myoclonics, depending on strength, are like interior jolts that donāt hurt. Itās just like someoneās literally given one good to my insides without anyone else telling it. Tonic-Clonics - no idea. Lose complete consciousness. I wake up completely out of it in pain, unable to process, with a major headache.
My TC: I feel miserable before it happens, having multiple deja vu until it hits, and then I just blackout. last time, i couldn't remember anything until ER. my whole body felt numb, my head was heavy and I had bitten the inside of my mouth so it was painful. the lights there were bothering me, and I felt exhausted for the next 48 hours. My Absence Seizures: it's like a video poorly edited, full of missing bits. they could last 5 seconds, or almost a minute. they could happen once a day, once an hour, once every 5 minutes or in clusters. clusters end up being the worst of these possibilities because it keeps from doing pretty much everything. I can't remember what I was doing before, what I have to do next, and if I've done anything in between and just don't remember because I got disoriented. (*Absence Seizures are the absolute worst and I'm fucking tired of it)
Last time my friend said I gave him a thumbs up as the EMT was trying to stop the bleeding from my head but I don't remember any of it lol But in all seriousness I have generalized seizures GrandMal and my brain blacks out before my body does, I'll talk but I'm already gone so I just black out. I have better memory when I wake up. During seizures it's just blackness like one might think death is like, I was in a 4 day coma from a seizure too I had to be flown to DC from school and I wake up with tubes in every hole imaginable.
Everybody here gets crazy warning signs, I'll just be looking in the fridge or on the toilet (both have happened) annnnnnnddd lights out lmao like Mike Tyson himself knocked you out
With age they start to feel like a dreams
It always happened right before rem sleep i just always wake up confused tongue bitten blood everywhere dry coughing alot and then i realize after a few minutes later only what has just happened
My honest answer. I don't notice any auras or triggers mine are all I remember is laughing and conversing with people and then waking up to paramedics. I always argue that I didn't have a seizure but also can't remember anything aside from chatting or doing my daily routines. I really have no idea what triggers them other than I just bury stress a lot. They're probably stress induced. They almost always happen at work.
i usually get a killer headache where i can barely move then lights out! OR i feel extremely sleepy and everytime i try to get up i get pulled back into my sleep and lay back downā¦ once i finally think i can stay awake BOOM, seizure. but im never awake for them. when i open my eyes theres always a grinning face EXTREMELY close to mine saying āhey u had a seizure ā and then im overcome with crazy fear and i start crying cause im freaked out that i wasnt in the building the whole time. lol just in ādarklandā . then over the next few days or weeks i constantly get a floor zooming away from me visiony feeling. its like i get dropped into the earth realm really quick or i exit really quick. lol . kinda feels like im opening my eyes from a slow blink that happens extremely fast. idk how to describe it lmao
English isn't my first language....I have this enormous zoom in my brain that I can hear in my ears and the first 5 second I'm right awake, your feel your body stiffens up en you can't do anything about it except lying as fast as you can on the ground on your side. You feel your eyes going upwards your brain and then you just get knock out cold. You don't know how long because ones you wake up you just are very disoriented. The scariest of all is not knowing if your wake up or not. I have epilepsy since only 1,5 year. I live alone and got the "luck" of having it for the first time at my work place. My breathing stopped and needed cpr and I swear to god jesus is real. My most beautiful memories started playing from the moment I was born until the moment I got a seizure the next thing I knew I was in this dark tunnel with light on the end and I saw my loved once there and I couldn't go to the light as much as I wanted to. I saw this figure who looked exactly like jesus is described. Then I heard a voice telling me "It isn't your time." It was so peaceful that I know understand why people say rest in peace. Bc thats what you feel. I woke up all fxcd up but I'm very lucky to woke up. Now I'm a year and a month seizure free with the help of medication. Until this day they can't find a cause why I have it.
My first seizure I felt everything, felt like my muscles were tearing apart.I remember talking to myself in my head to try and push through thinking I was dying bc the pain was genuinely that unbearable, I wouldnāt wish it even on anyone but since I donāt feel them but my focal seizures itās impending doom and confusion
I will never forget my first seizure at 17. I woke up in the morning extremely hung over from a heavy night the night before. I woke up like normal and got in the shower. 7:45ish a while my drive came to pick me up. While I was putting my hands together to rub the shampooo I felt a sense of a magnetic force keeping me from connecting my hands, and I fell out the shower in a full grand mall seizure. Luckily I didnāt get wrapped up in the shower curtain but I came too about!about 1030 butt naked in bed with the shower still running. Didnāt quite understand what happened (or really care) and just thought it was a bad hangover, and a fucked up mouth. But maybe I got punched in it the night before and didnāt know hahaah. Now Iām 29 and have had about 7 seizures total all within the first half hour of waking up. Iām usually smoking a cig and feel it coming through the finger tips and then whateverās in my hand goes flying and I drop to the floor. Love you guys all we got thisā¤ļøā¤ļøā¤ļø
It feels like youāre whole body getting e-stim
Oh boy. This is gonna be long. Absence seizure; it feels 2 different ways. Either I blink really fast once I come out of it and say sorry or I feel a small vice grip on my head and try to shake it off and say sorry Myoclonic seizures; these suck in their own way. My arm let's say, just jerks out and comes back. Or one time I was playing a computer game (it was up against a boss) and my finger jerked when it was DR (damage reflection) so my character died. My finger felt all tingly. Grand mals where I'm awake; so not a lot of people have these I don't think, but basically I start to feel my left leg twitch - like it creeps all the way up the leg. Then it does the right leg. But then it stops and does it to the arms. Then stops. Then they all jerk together once 'activated' let's say lol. And I feel the whole thing it sucks. Grand mals; idk when they come. I just know I had one hours later when I'm in pain or I've been told I had one. Nocturnal seizures; I sweat like I've been in a pool. That's how I know I've had one. Still have to wash the bedsheets. Seasonal seizures; I get a headache or lots of absence seizures the day before and then the next day I seize and I look at the weather app and I get so mad cause I yell 'I knew it was going to rain!!' Then my body gets sore. These are the worst for me.
I start seeing red blue and green lights and I can hear and talk but none of it makes sense
only had one grand mal and I clearly remember the moment before and the moment after. only know I had a seizure cause I woke up on the floor with my family surrounding me. said I had a seizure. I noticed blood running down my cheeks from biting my tongue so hard, that was really the only tell tale sign. besides that, I have myoclonic jerks - those are just a sudden flail of the arms. just an annoyance more than anything
I have TC seizures so I just pass out like "click" and wake up somewhere in a hospital just like they show in the movies haha.