What was your first seizure like?

[PhylisFeinerJohnson]

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.

[Deb12345]

My first major seizure was in March this year. I had just come back from work, went up to my bedroom and sat on the edge of my bed to do some writing. The next minute I knew everywhere began to spin. 45mins later I woke up under my bed sheets, feeling extremely sick, very confused and thinking to myself I don’t remember going to bed. I thought I must have gone to bed because I was feeling really sick. Anyways, I eventually realised that time was ticking on, so struggled to carry on with normal daily routines i.e. clean my pet rats cage out etc. Why I don't know because I could hardly walk nor see. 20mins later my family eventually arrived back from their work. I told them I was feeling very, very sick when my sister noticed a huge lump on my forehead. We then took a look in my bedroom and found my bin completely kicked in and various other items had been knocked over. That’s when we knew I had, had some kind of big fit. My family took me to hospital to be checked over. I was diagnosed with E. at the end of July after having further major seizures. Yep they are very frightening. Touch wood haven't had a major seizure since the middle of August, so fingers crossed the tablets are working, though having to change them because they are causing my hair to fall out. I did however go from March to end of June without having a major seizure so at the moment not building up any hopes.

[PhylisFeinerJohnson]

Wow, that is really scary. Have your other seizures been as violent and how often do they occur?

I know Dilantin made my (what was once long) hair fall out. And as if that wasn't enough, I got galloping gum rot!

[CathyAnn31]

Aug 21, 2009.

The night before, me and a girlfriend went to a hard rock concert and over-indulged in beer. That continued once I got home. I stayed up too late, didn't get enough sleep. The next day (Aug 21) I felt terrible. I couldnt eat, could barely drink...

At about 4:30 pm I was talking on the phone with a girlfriend. I screamed and fell to the floor and had a grand mal seizure in front of my 11, 10 and 5 yr old. My oldest called 911, my 10 y old went and got a neighbor. They said I asked the neighbor "who are you?". The only thing I remember about it, was talking to my friend on the phone, then being wheeled out on a gourney. And the cute paramedics of course. I then spent 3 hours in the ER. I had a huge headache, and thought I was going to throw up. My body, particularly my legs were sooo sore.

I know my seizure threshhold was significantly lowered that day due to many things I could have controlled.. But the seizure before that (April 2009) had completely different circumstances and happenened after exercizing.

I had no auras in either, atleast I don't think so.

[PhylisFeinerJohnson]

Wow, you're fortunate to have such smart kids.

[CathyAnn31]

I just read you wanted the 1st seizue experience...haha.

Back in April I went for my 2.5 mile walk, and I felt great. I came home and was about to vaccuum the floors. Next thing I know, I was in my bed completely disoriented. I called my hubby at 7 45 and asked when he'd be home for dinner. He reminded me we ate at our usual time of 6pm and that he and my oldest were at Boy Scouts. My tongue was completely chewed up. I went to the dr the next day and he said it sounded like a seizure and wanted me to go for a MRI & EEG.

Don't really know much about this particular seizure since no one witnessed it. But I hadnt been drinking the night before, I was eating just fine, wasn't dehydrated, etc...

Completely different circumstances then the 2nd one.

Sorry I misinturrupted your question.

[PhylisFeinerJohnson]

So what happened with the SECOND one??? Was that the night you went out drinking...etc?

[CathyAnn31]

So what happened with the SECOND one??? Was that the night you went out drinking...etc?

Yes, the following afternoon actually.

[Deb12345]

PhylisFeinerJohnson wrote: Wow, that is really scary. Have your other seizures been as violent and how often do they occur?

My reply: I don’t think my seizures are very violent (was described they were very rhythmic), though the seizure and time it takes to come out of unconsciousness can last between 30 – 45 mins. It then takes me around an hour or so to remember things again. I had my first tonic-clonic seizure in March, then didn’t have another until end of June, though in-between was a wired time for me (I didn't feel like me). After the one I had in June was taken to hospital where I had another tonic-clonic seizure on the same day. I had to stay in hospital for 12 days. Why I haven’t got a clue? The last three days in hospital I suffered very, very badly from Postictal Psychosis. The hospital staff thought I was going mad and my Mom had to fight to stay with me for those 3 days / nights because the staff just ignored me. At that time nobody knew I had epilepsy. It didn’t help that I was on the stomach ward. After the 12 days I was allowed home (worse off than when I went in). Since June I’ve had another 3 tonic-clonic seizures (1 in July and 2 in August) and ended up in hospital each time, for 4 hours. Touchwood, like I said earlier haven’t had one since August though not building up any hopes. I am frightened to go back to work because I think being on the computer for too long might be a trigger as well as stress etc. My Neurologist (who is top at the hospital I go to and is absolutely fantastic with me / others ) is getting me to see a top consultant at another hospital (which specializes in epilepsy), because he said there is something special / different with my type of seizures. I must admit I do get loads of auras etc. Sorry if I seem to have gone on a bit. I hope you are having a good weekend.
Kind Regards
Debbie

[PhylisFeinerJohnson]

Sounds like the hospital is worse than the seizures!

[sniegs]

My first major seizure happened in June of 1996. I had just finished the sixth grade, and was celebrating by spending the night at a friend's house.

In the morning, we were sitting on the couch in her living room, watching some sitcom on TV. At some point, I started feeling very weird. I had a vague feeling of deja-vu, then started seeing images from the TV spread to the walls and ceiling of the room. Also, the sound from the TV became distorted and echo-y.

After the strange visions and some considerable dizziness, I suddenly became very nauseous. I was feeling very weak, but I managed to say, "I think I'm going to throw up," and my friend got up from the couch to show me where the bathroom was ... but before I could move to follow her, everything went black.

I was so scared; I thought I was dead. I had had somewhat similar episodes in the past, except I had never lost consciousness.

Anyway, I woke up in the emergency room, confused and in my pajamas.

It wasn't as spectacular as the seizure I had in the middle of a school dance during my sophomore year of high school (thanks, strobe lights) ... but it was still plenty scary.

[Crystal11]

My first seizure I can remember was in 3rd grade. I was in content mastery room (was in special ed k-12) and a lady was helping me with me work. I remember listening to the sounds of peopel talking and the noise of the room becoming condensed and forming in the center of the room. I smelled an odd rubber or plastic smell and chemicals. I was supposed to be working on math I think, and I was staring at my paper and just out of it and never remembered anything else. Whatever else I did got the attention of another lady and both of them were asking me questions afterwards and got onto me about not doing my work. I have always remembered the sound which is the same sound I have during my auras before a complex partial. But I got in trouble for "not paying attention" and "staring off" a lot. I was dianosed as A.D.D by the special education diagnostitian. It got so bad that the school contacted Mom, and she took us to a neurologist. We were dianosed with absence seizures but was not treated due to Mom's fear of medications. We (my twin sis and I) were born three months early and almost didn't make it. Meds saved our lives but caused some troubles too.

[PhylisFeinerJohnson]

Sniegs...I had a date from hell with a guy I was dying to go out with. (Of course this was our first date.) If you're from the "disco generation" you can remember how dancing was more like gyrating to boom-boom music. Well, I started to have a seizure, but it just looked like I was "dancing". Except when the pulsating music stopped and the crowd dispersed, I sank to the floor like a dead bird. The ironic part was that -- strobe lights or not -- it was the gyrating crowd that was "holding" me up!!!

That guy never asked me out again. I wonder why???i

[sniegs]

Sniegs...I had a date from hell with a guy I was dying to go out with. (Of course this was our first date.) If you're from the "disco generation" you can remember how dancing was more like gyrating to boom-boom music. Well, I started to have a seizure, but it just looked like I was "dancing". Except when the pulsating music stopped and the crowd dispersed, I sank to the floor like a dead bird. The ironic part was that -- strobe lights or not -- it was the gyrating crowd that was "holding" me up!!!

That guy never asked me out again. I wonder why???i

Yeah ... this dance was plenty crowded, and I was in the most crowded area closest to the stage (this was in my school's auditorium), and the music was so loud that, even though I had about ten seconds' warning, I couldn't communicate it to my four friends around me.

From the report I got afterward, I fell into two people, and they were caught off-guard and moved aside ... so then I fell to the floor, which resulted in a nice bump on my head (fortunately it was mostly under my hair). Once they realized what was going on, everyone formed a wide circle around me and the music stopped as they watched my seizure run its course.

When I woke up propped against the wall in the hallway and two paramedics were kneeling there watching me, I remember the first thing I said was, "Aww, not again!" Haha.

[Meetz1064]

Wish I knew....I had my first t/c at the tender age of 13 months, so I don't remember it, and my Mom had noticed what she termed "odd behaviors" prior to that--more than likely absence seizures.

[PhylisFeinerJohnson]

Oh geez...you started early...

[Loopy Lou]

I don't really remember my first one. I know it was about 3 in the morning on the 13th July last year. I'm from northern ireland, and perhaps some of the UK people know about the 12th (battle of the boyne, orange marches etc) Anyhoo, it's a bank holiday and we'd been out seeing the parades all day, walked for miles and miles, and then went back to the house to carry on drinking as is very much usual on the 12th.

So yeah, was sharing a bed with my cousin as i was staying at my aunts house, and i remember watching tv for a bit, and then it was pretty much a blank. My cousin said later that i turned away and started shaking and stuff and then i fell off the bed and hit my head repeatedly off the wall.

I start coming to, and then the ambulance turns up. I was really out of it, and it probably didn't help that my breath would have stank of booze, because the ambulance people told my cousin that i was obviously just drunk, and she was wasting their time.

I didn't remember any of this, except vaguely seeing the paramedic's face. I slept for about 15 hours and THEN i felt it. I had bruised ribs, a couple of bumps on my head, and other bruises dotted down my right side from falling on the floor.

I moved back to England to live with my parents again about 10 days later.

Hmmm... it was about 4 months til the next one, and it followed the same pattern. In the middle of my favourite nightclub, again at about 3am. My brother had to convince the paramedics that i wasn't on drugs.

[Loopy Lou]

Oh yeah.... i think this is the first time i've ever told that story fully... I've always avoided talking about it.

[knothing]

My first I was standing up talking to someone at work and when I came to all I could hear was someone saying I was going to be okay and the paramedic was already there. I only remember its and pieces about the three days following. Minus the location and what I am doing it is always the same. Happens with no warning and the same memory loss for 3 days.

[PhylisFeinerJohnson]

I'm lucky, because once I became older (in my 20s) I became aware of the warning signs. (Mouth filling with salavia, voices sounding distant.) And then I would "hit" the floor before I fell to the floor. I used to joke that nobody died of seizures, they just died from what they hit on the way down. Little did I know.

But the funniest story happened at work...

I felt a seizure coming on and I locked my door and sat on the floor. Whenever it was that I became conscious, I openbed my door, went into the hall and said "where's the Xerox machine?" Everybody looked at me as if I was was from Mars.

Apparently the Xerxox machine next to my office had caught on fire and the building was evacuated...while I was locked in my office...totally blacked out!