Looking for other "start stories"...

[Ghots]

Okay, so, I just found the forum recently, and since I don't know anyone except myself that has epilepsy/seizure disorder, I was wondering if anyone else would share the story of the first seizure?

I had a hard time talking about it at first, but I found that once I was able to discuss it with friends, I was gradually more comfortable with talking to friends and family when they would ask me questions about it.


It was scary for me. Very. I woke up in the backseat of my dad's truck and he was speeding down the interstate. He told me to lay back down, I had had a seizure and I was on the way to the hospital. I had a grand mal seizure while I was sleeping on the couch and my dad walked into the living room while it was happening, waited for it to be over and picked me up and put me in the back of the truck and took me to the ER. I didn't believe him at first, and told him it wasn't a funny joke. He popped the make-up mirror down in front and showed me my two black eyes... I hadn't been in a fight so it didn't make any sense.

I had been drinking a lot of energy drinks and mountain dew that month. I was working out in the weightroom at least 9 hours a week. I was 18, senior year, I had drank a ridiculous amount of mountain dew and had a few cans of red jak and then gone about 48 hours without any sleep. Then I had my first seizure. They ran a tox screen that came back, obviously, with high levels of caffeine. But they couldn't rule out epilepsy or a generalized seizure disorder, because of a medication in my prior medication history.

Anyway, that is my story. That was 4 years ago. I am almost 23 now, I was put on keppra at first. After my first dose of keppra I ripped of my shirt and ran into traffic, jumped on top of a moving truck, I do not remember barely any of it.... by the next day I was switched to dilantin, and I have been on dilantin ever since, at it has worked well for me so far.

 

[momof3boys]

First off, I'd like to say welcome to CWE! Your story sounds like it was a very scary experience for you. Ive been apart of CWE since November 2010 and Ive found alot of great people here who gives each other great advise and support!

As for myself, I was born with Epilepsy, so I dont remember my first seizure since I was an infant when I started having them. Im 30 now, and have had my first VEEG in march of this year. I have left temporal lobe epilepsy, and in the past, Ive had complex partial seizures and grand mal seizures. Since this year, ive been having simple partial seizures, where Im aware of what is happening during the seizure, rather than being unconsious like ive had my whole life during the seizures.

If you need any information about seizures, or have any questions, Im here to help you!

 

[Nakamova]

Welcome Ghots!

I was 35 when I had my first seizure. It happened late afternoon in a real estate office where I had gone to sign a lease (conveniently right after I had filled out my contact information). I woke up in the hospital, no clue how I got there (and I still don't know who took care of my car). Was told I had two seizures, one in the office and another in the ER. Very scary indeed, like waking up from a nightmare TO another nightmare.

At the time, I was very stressed and hadn't been sleeping or eating well for several days. All I had eaten on the day of the seizures was a banana and several diet sodas, so I'm sure that played a role.

That was almost 12 years ago to the day! I guess time flies when you're having fits...

Best,
Nakamova

 

[caraagrace]

That's almost exactly what happened to me. During my first seizure I was completely asleep and started seizing out of nowhere which woke up my boyfriend. He took me to the ER and I have had a CT, MRI and and two EEGs - all came out normal. I just had my second seizure in my sleep this last Saturday. I just picked up my prescription for Vimpat and starting it tomorrow morning even though I don't really think I need to be taking anything since I haven't been formally diagnosed yet. Have you had an EEG test done? Have you only had one seizure?

I'm new to this forum too and I've found it really comforting.

 

[Lola Lolushka]

Hey,

My first was when I was 8 - I have photosensitive Juvenile Myoclonic Epilepsy, however flashing lights etc have never caused a seizure. My first seizure was apparently caused by hypothermia and hypoglycemia, which I find strange. None of the other seizures have been related to that. When I have a seizure I lose all memory of the 3 (ish) hours preceeding a seizure, and eventually bits and pieces come back. THANKFULLY i don't remember a thing about the actual seizure...

 

[Crash]

Hi Ghots,
Mine was when i was seventeen,first day of first ever job thats why i think it was stress induced.There are another couple of factors but the Drs at the hospital dismissed these but im not so sure.Anyway i can remember standing about been told what to do and then coming round in a bloody air ambulance,to this day i dont really know the full story,i suppose i was to embarrased back then to ask anyone,just kept it swept under the carpet.

 

[bazpa]

Hi! I don't know when I had my first seizure. Looking back I am sure I have had them since I was little, as I remember that weird feeling in my stomach, and did not like any blinking lights. In my twenties, I had weird episodes sometimes, but thought I was just tired as I had 2 small kids. In my thirties, I had more of them, but was so busy, and decided it was just anxiety. In my early forties-I hit the wall. Could hardly function, and nobody could figure out what was wrong. It is so odd to realize you are 2 blocks from home at 2 in the morning, and have no idea how you got there! I thought I was losing my mind! The most memorable, and the one that finally got my problem diagnosed was driving 25 minutes down the freeway that I have no memory of-complete with people calling 911, and State patrol. I was so confused, didn't know where I was, speech slurred, and balance off so bad, that they thought I was on drugs or drunk! I guess the good thing was that for some reason I had no fear, and I normally would have freaked! Thankfully at some point after being yelled at ect-my eyes rolled back in my head, and they called EMS. The whole thing scares me now, because if I had done anything dumb, I could have been hurt, as obviously law enforcement does not know much about seizures. I have very little memory of that day. I am so thankful that I did not hit anyone or hurt anyone. Doctor cannot figure out how I drove that far in that condition! That makes 2 of us!

 

[jyearta]

Hi Welcome

I had seizures as a child but wasn't diagnosis until I was 19, I have been thinking all this time they were all the same. where you are aware of everything.

I have been talking to my husband, telling what all I've learn here. He told me for the 1st time that I had a grand mal the night he took to the hosp. had only been married 2 days.
move ahead a few months, he said I had a lot of bad (what ever that means) from 1972-1999. I had forgotten all about those.

Now I'm on Dilantin and klonopin and my seizure are VERY small, don't last but a few seconds, and are not as severe, this is one time, glad the old memory didn't recall.

 

[qtowngirl]

Hi Ghots,
I woke up around 4am to my boyfriend saying my name and trying to wake me. I drowsily opened my eyes and the first thing I focused in on was a gun in a holster on a cop's hip. My bed was surrounded by police (I still don't know why so many of them showed up) and my bf was telling me I had a seizure and had to get in the ambulance and go to the hospital. It was all so fast, one minute I went to bed the next I woke up like I was in the middle of a bloody crime scene. I guess they must have been right near the house when he called 911. It's weird - it was eight years ago but the memory's so vivid it could have been lastnight.
I never thought I could be more scared than that night. But, the second seizure was not quite two months later and that was it... welcome to E. Nothing was as scary as being given, or learning to live with, that diagnosis. Now it's life.
...Welcome Ghots, the forum's great.

 

[Lola Lolushka]

wow. Traumatic way to be introduced to the world of epilepsy...

 

[qtowngirl]

Yes, the day my life changed forever there's no doubt. Just too bizarre. neil129 sounds like you can relate waking up in the air and all?!
Still have the odd day where I can't help but wonder, 'was that really me?'... but here I am.

 

[Bluesbrkr]

I probably have a rarity, but my first seizure was actually pretty darn funny! I have a very rare type of seizure called Gelastic seizures. In a nutshell, it is like an emotional outburst, usually as crying or laughing uncontrollably. Mine manifested as the laughing kind. The laughing is very unemotional and sounds more like some weird maniacal laugh with no sense of mirth, almost like yelling.

The first time it happened, it was the middle of the night and my wife and I were sound asleep. All of the sudden, I had a weird, jerking spasm in which I smacked my wife hard on the rear end, and then went into the outburst of uncontrollable laughing which lasted about a minute... Needless to say, my wife was not overly pleased with me!! Of course, I had to sit there and try to explain that it was not intentional and I couldn't help the laughing, and I didn't know why.

Funny thing is, it happened almost exactly the same a few nights later. My wife said "we are going to the doctor tomorrow, or you are sleeping in another room!"

Things haven't been quite as "funny" since, but it makes for a great story!!

 

[qtowngirl]

Bluesbrkr,
Wow, that is something. Sorry to hear you have epilepsy, but I must say if you had to begin anyway, not the worst way to start. I feel for your wife though, lol I can see why she wasn't finding it so funny.

 

[triller]

I had my first in nov 2005 (55 years old). I was eating and looking at tv.Just started to feel wrong, Did not know what I was looking at or where I was.also did not know my wifes mame kids names dogs name what year or day it was, and so on.took me to the er ddid all the test and all came back o.k took a long to find out what it was

 

[Crash]

Yes, the day my life changed forever there's no doubt. Just too bizarre. neil129 sounds like you can relate waking up in the air and all?!
Still have the odd day where I can't help but wonder, 'was that really me?'... but here I am.

Oh yes,im with you on that but i think you win with the guns and all,i can remember the chopper blades,so much hassle just for a loose wire in our brains that shorts out every now and again!!!

 

[qtowngirl]

Oh yes,im with you on that but i think you win with the guns and all,i can remember the chopper blades,so much hassle just for a loose wire in our brains that shorts out every now and again!!!

I win I win?!?! LMAO.... just what I needed this morning, thanks neil!

And I concur, a lot of hassle. Like I said, why the hell did they need so many cops? Only one is 'required' to respond to a call. And why were you in an air ambulance? (not really my business - but I'm guessing your town didn't have a big enough hospital?) But exactly - hassle. This just goes to show, in both our cases, how the community as a whole really is uneducated in E. Yes, hospital consideration is always good, cuz you just never know how bad a bad one's going to be, but that doesn't mean the whole damn cavalry!

 

[Cint]

My first TC seizure was back in 1980, Easter morning. I was home on break at my parent's house and wasn't feeling right that morning, so went and took a shower. When I stepped out of the shower, I started feeling dizzy, my world was slowing down, so I sat down on the floor for a few moments and when I thought it was over, the last thing I remember was as I stood, I started feeling weird and this time I was spinning and it was like when you go to the movies and they show everything in slow motion........ then they said I fell backward in to the bath, hit the "hot water" and lie there long enough, having a tonic clonic seizure, to suffer 1st degree burns on my right arm and on the right side and across my back. The next thing I remember was flying in the "Flight For Life" helicopter to the nearest hospital. I spent the next two months in the hospital for the burns and undergoing all kinds of tests...EEGs, EKGs, CAT scans, etc.
The most irritating thing is that prior to this I had been experiencing CP's and had been to a so-called dr. that didn't make the correct diagnosis. All this could have been avoided had he ordered some tests.
I've been through hell and back with meds, more seizures, more accidents, brain surgery, depression and now the VNS, which, for me, is the best option. That's my story and I'm stickin' to it.

 

[Crash]

And I concur, a lot of hassle. Like I said, why the hell did they need so many cops? Only one is 'required' to respond to a call. And why were you in an air ambulance? (not really my business - but I'm guessing your town didn't have a big enough hospital?) But exactly - hassle. This just goes to show, in both our cases, how the community as a whole really is uneducated in E. Yes, hospital consideration is always good, cuz you just never know how bad a bad one's going to be, but that doesn't mean the whole damn cavalry!

Hi,the nearest hospital is about 100 miles from where we were,thats cut in half now due to a bridge.Also there is an old folks home/primitive hospital,no nuero equipment close by,my mum has just informed me the air ambulance was there for some reason,i assume they were dropping some one of there so i got put on for the return leg to the city hospital.

I can see how uneducated people overreact,i helped a guy out at a bus stop last year,his mate was having a tonic,but he wouldnt listen he was to busy screaming down the phone to the emergency services "He could be dead,he could be dead" The guy was fine after a while,no ambulance,no docs and no hospital.

qtowngirl our cops dont have guns,so if i wake up with my bedroom full off strange men with guns theres some serious heavy s@*t going down!!!

 

[bazpa]

I would agree on the education, especially for law enforcement. I had 2 state patrols there yelling at me, was almost cuffed until my eyes rolled back in my head. I wonder-they thought I was drunk or had pot-I can smell a beer on my husbands breath at 20 feet! Give me a break-those 2 things have a strong smell. It was 8 in the morning-I do realize that people drink in the morning, however, my make up, and hair were just done, and I had a suit on. The other surprising thing was, that once EMS arrived, I refused treatment-I have no idea why-and they left. I remember very little, and what I do remember seems like a dream. I swore I did not sign a release form, but found it in my car 4 days later. I understand the right to refuse medical help, however, when one does not know where they are, what is happening to them, cannot speak or think of words properly, cannot walk without almost falling over, and having 1 episode right after another-it seems that maybe having someone sign a consent that is clearly not in their right mind is such a great idea. Once I found out what was wrong, the whole think scared the hell out of me. The stories of people getting injured by law enforcement is really scary. I had no idea.

 

[qtowngirl]

"qtowngirl our cops dont have guns,so if i wake up with my bedroom full off strange men with guns theres some serious heavy s@*t going down!!!"

=) actually neil, I know I said we don't need the whole damn cavalry, but looking back at what that was introducing to my life... well said.