what do you remember of your first seizure

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
209
Reaction score
0
Points
0
i remember having a headache, and i was complaining to my mom to turn off the tv, and she yelled to go to my room. the last thing i remember was walking up the hallway toward my room, and seeing all these rainbow flashes, and then everything went black. my brother told me later he did see me get back to my room, and come back out 5 minutes later, begging my mom to get me a credit card, a cell phone, and other various items and then suddenly collapsing behind her chair and seizing. then the paramedics came and i had no idea who i was. the next thing i remember is being pushed out of the ambulence, and my entire family was standing there watching me in a panic.'

what do you remember?
 
only thing I remember is looking up at everyone looking back down at me. The looks on there face, I will never forget. I asked why they were beating me up. They told me I did it to myself. Then we went on about our day, which was the wrong thing to do in the long run.
 
I was staying at my aunts and sharing a bed with my younger cousin. We were watching telly (something with gun fights in i think). Next thing is paramedics telling me i'd had far too much to drink lol. That is the first ever seizure i know of, and i probably wouldn't have known about it if i hadn't been sharing the room with my cousin. She said the paramedics talked to her as if she was an idiot too - she's deaf and couldn't hear them well.
 
I was at a rental office singing the lease on a new apartment. I had just filled out my contact information. I think my brain waited to make sure that info was available before going haywire. Next thing I know I wake up in the hospital. No idea how I got there, how much time had passed. I think my ex-boyfriend was there (it was recent break-up, probably part of the trigger). To this day, I still have no idea who picked up my car and drove it home for me...
 
I can remember in 1st grade getting in trouble for not getting up when the rest of the class was already in line. My teacher was standing infront of my talking and acting like I was ignoring her. She said I wasn't talking or doing anything but sitting there "asleep" even thought I didn't look like it, with my eyes open.
I felt so bad because the rest of the class was telling to hurry up and get up in line.
The rest of the class time, students were kinda treating me weird like I was not all there.
My teacher called Mom and said that there is probably something wrong. So Mom took me to the doctor and an EEG was set up. We went and the neuro said we are probably having Absence seizures or very short Complex partials. He said that it might be best to try Dilantin and seeing if my school work would improve. Mom wasn't happy about that at all and thought the doctors were not right. We have spike and waves on the EEG but no actual seizure while the EEG was running.
The doctor said to check in and let him know what is going on.
We were diagnosed with ADD by the school and was in Special Ed classes. My twin and I are deafblind with Epilepsy. We have residual hearing (with hearing aids) and residual vision but very limited. So Special Ed was an appropriate placement since we had multiple disabilities.
Anyway- Mom was terrified of hospitals and doctors since we were born three months early and died, then came back and was in the hospital for three months and serious illnesses and treatment just to stay alive after that. So our birth was too much for her to deal with at 20 years old. She did an awesome job raising twins with serious medical conditions and probably didn't want to hear about possible Epilepsy- another condition to add to the collection. We already had heart surgery at 4hrs old- without anastethia but probably local. So our CNS was under developed and traumatized.

So Mom just dismissed them and really didn't understand that staring off or having problems responding would be a seizure at all. She would just say: "You are staring off again." then wave her hand infront of my face. Then she would also say: "You're brain is taking a break." and then she thought it was blindness related with our eyes. During a seizure, my eyes go to the right and get "stuck" and sometimes my head and upper body will go to the right as if I am tracking or looking behind me.
Anyway- when I was diagnosed two more times, Mom would say: "You're seizures aren't bad enough for meds." and had me taken off of Tegretol. I just didn't know enough to say that Tegretol is the number one choice for CPs. That was when I was 16 or so.
Now I am 27 but rediagnosed with compex partial at age 20 and again at 22 and again at 23. That is when I went to a neurologist and had all of the testing etc..

My memory of my frist seizure was embarrassment and shame and guilt since my teacher and classmates didn't understand, neither did I.

Take care
Crystal
 
The first one I THINK was a seizure was when I was about 5. I remember sitting in the front yard feeling soaring euphoria for 2 or 3 minutes. I still feel that once in a blue moon. If that wasn't a TLE seizure, the next one I remember was at a wedding reception when I was about 18. One minute I was inside dancing, the next outside in the parking lot. I don't remember inbetween, and always wondered how I got there. At the time I just shrugged it off, like I did all the other times weird stuff happened throughout my life. I think there are probably many others between age 5 and 18, but I don't remember them.
 
I can remember being in the shower, washing my very long hair. It was one of those old-fashioned showers with a heavy plate glass door and a stainless steel handle that you had to turn to get in and get out. There were 4 water jets…three coming from the side wall…and a shower head in the ceiling.

All of a sudden, it felt like my blood was rushing out of my toes. As all my energy drained out of me, I thought: “I’m going to drown.” Then as I fought with the locked door handle to get out, I realized: “I’m going to die.”

With one last push, I managed to turn the handle before I went down. And thankfully, my head landed on the floor, outside of the shower.

I was terrified.
 
I was 11 when I had my first seizure. I have some memories of the ambulance ride, it was really strange. All I remember of that is people trying to hold me down, and all I wanted to do was get away. There were two worried looking people in the ambulance as well but I didn't recognize them, even though they were my parents.

It was really strange. My first tc was so much different than the rest I've had since. Feeling like a caged animal going on survival instinct to get out at any cost.

The next day I woke up in the hospital and was throwing up every time I moved.
 
Mine was April of last year.

I'd just gotten back from a 2 mile walk. I felt fine, wouldn't have walked otherwise.

I decided to vacuum the carpets, and needed to empty the canister.

Next thing I know, its 45 mins later. I woke up in bed, completely disoriented. I called my husbands cell and asked when he'd be home since he was 2 hrs late and missed dinner. He told me he'd been home on time and that we did eat dinner at the usual 6pm. He raced home from my sons' Boy Scout meeting because I really freaked him out.

No one saw what happened. My tongue was chewed to hell.
 
My earliest memory would be around age 5 or 6 and just a lovely warm feeling while I drifted off into quiet and slowly back. Being in an absence seizure isn't such a horrible place to be. Wouldn't mind going back there some days.
 
I had just gotten home from work and was going to get a quick snack. I opened the refrigerator door with a particular jerking motion (which I later figured out was a trigger for me) and… my arm just seemed to have a mind of its own. It twisted and writhed in a sickening way. Just thinking about it makes me queasy. I screamed but I wasn’t sure if anything came out. (It did, according to my dad.) Something in me knew that it was a seizure. I can remember the utter disbelief while thinking, “Oh my god, I’m having a seizure. This can’t be happening!” These thoughts must have passed through my mind in mere seconds because I was already starting to black out. It was like some sort of tunnel vision, with everything going dark around the edges. I was so freaked out that I was relieved by the thought of blacking out. I thought, “Oh, yes please, I don’t think I can cope.”:eek:

The next thing I clearly remember is bumping up into the ambulance on a gurney. It wasn’t scary at all “waking up” in an ambulance. I knew something horrible had happened and it was comforting to know that things were being taken care of.

I say “waking up” because apparently I had come ‘round a few minutes earlier. Poor Dad told me he heard a clunk then 3 screams. He thought I had hit my head on the fridge. He came in and saw me on my back in full convulsions, foaming at the mouth. He called 911 and while he was talking to the operator, I came out of it and sat up.( This would have been 2 to 3 minutes at least because my dad is disabled and it takes him a while to get around) He told me not to get up and to lean against the fridge. He says that while I was sitting there, I started counting by 2’s; something like, 14, 16, 18, and then 25. (I was never good at math!:p) Later I even stood at the door behind Dad, waiting for the ambulance to arrive. I sometimes get the giggles thinking of myself standing there looking out the door clueless as to what I was waiting for. And yet it’s creepy to know I was doing this while not being completely conscious.
 
That is

well-written, travelbug. A very interesting description.

As for mine..........ermmmmmm, I have no idea. My started when I was less than a year old. :paperbag:

The first one I can remember? None of them really. I don't even get an aura. I just remember waking up from each one, and thinking a string of expletives (not printable here), knowing what happened based on the state of my tongue, and the, uh, misshapenness of and pain in my body. *eyeroll* Stupid t/c's.
 
I have no recollection of the start of my first seizure at 20 years old. I was in the bath and my wife heard me making choking/grunting noises. She pulled me part way out and called 911.

I had just become an EMT the year before. I only have vague memories of one of my fellow EMTs in the bath. The neighbor man was there as well, but I don't remember him at all. They think I seized at least twice.

My first real memory was being hauled down the driveway on a stretcher and seeing others watch. The neighbor lady had our baby. Out again until in the ambulance on the way to the hospital. That was my clearest memory. Looking up and seeing one of my fellow EMTs upside down trying to talk to me. She was in the seat at my head and thus my view of her was upside down. We laughed about that later.

5-6 days in the hospital after that running tests. We didn't have cable TV and I saw MTV for the first time. :)
 
5-6 days in the hospital after that running tests. We didn't have cable TV and I saw MTV for the first time. :)

Buckeye: it's funny what sticks in your mind. We didn't have cable either when my son was in the hospital in 2002. I remember ER was on and I was thinking of how surreal it was- there we were, in the hospital, watching a hospital drama.(Incidentally, my son is absolutely fine, he just got off to kind of a rough start.)
 
I remember my first siezure. It's funny to think that it happened over a year ago, now. I was working 12 hour over night shifts, 2 days on, then 2 days off. I had to drive about an hour to work, arriving an hour early, then the hour drive home. I have 2 kids, and on my off days I would stay up during the day to spend time with them. I think that situation is what did it for me... After my second day on, I came home and went to bed. My daughter came in my room about an hour later, wanting to watch tv. The last thing I remembers is pointing the remote at the television, and telling her to say stop when I got to the cartoons. After that, I 'came too' in an ambulance. I had no idea who I was, or where I was, or anything. Slowly, it came back. In the hospital, they did a CT scan, kept me for an hour or so, then sent me home. My wife says the seizure (a t/c) wasn't too long, probably about 5 minutes, and I was walking around and talking after it happened... I am sure you all know how that goes. Anyway, that is about it for me. I changed my hours to a normal shift, but the seizures keep coming every 4 or so months.

SeizeTheNight
 
I, like Buckeye, was 20 yrs old when I had my first seizure, and BOY was it a BIG one! My family & I were in our gigantic van (not Econoline size, but pretty darn close to it!) on the way to Colorado to visit my uncle#5 & my aunt#1. I remember having an awful, awful migraine & went to rest on the couch in the back of the van...then voices stopped. I could feel my eyes rolling, along with the rest of my body. I bounced & bounced like Corduroy the Bear in the Mattress & Bedding Department. I must've bounced off the couch because my dad had to pull to the side of the highway to protect me, once he discovered what was happening. My mom, sisters, & brother were horrified. I didn't go to the hospital, but the next day at my uncle's house, I remember seeing a rented oxygen tank, which I didn't need. And thus began my ever so long drive on Temporal Lobe Epilepsy Avenue...can anyone help me find the 'YES OUTLET' sign? All I've found are the 'NO OUTLET' signs...hmm...
 
Last edited:
I wonder how different my life would have been if I'd had all this information years ago. So many things make sense to me now.

Anyway, my 1st one was a TC off the piano bench, which I knocked over in the process. My parents came running from upstairs so noone saw it. I don't remember getting to the hospital or any of that. Waking up in a different place with everyone around me, already in a room. I don't recall any aches or pains. My family told me I just went to sleep afterwards, never really waking up.

One funny thing, I was a young teenage girl and there was an older teen boy who would come along with his rolley bucket and mop and mop the hallways. He would look in at me as he mopped in front of my doorway. I'm told he would stand there and mop and stare and I had the cleanest spot in the hospital!
 
My first tonic clonic seizure happened at home in the kitchen/dinning room.

My Mum and my brother Kieran were sitting down at the table and I was drying the dishes.I was having severe petit mals while doing it and my Mum was yelling at me to stop looking for attention (even though me and My Dad have the same epilepsy he doesn't have petit mals so my Mum has never seen them before).

Then everything went black and I woke up in my older brothers (Rory) room at the other side of the house.
Kieran was sitting on the end of my bed and I asked him where Mum was,he told me she'd be back.She was in fact calling my Dad.
He told me to go back to sleep,which I did in a flash.I woke with the worst headache I could barely open my eyes and had to rest for a whole day.

That was it.
No ambulance was called because my Mum knew what to do straight away.Plus by the time an ambulance would've gotten there it would've been pointless lol!
 
Back
Top Bottom