When someone sees you have a seizure for their first time

[valeriedl]

What does someone do when they see you have a seizure for their first time?

My husband's son (who's 25) has seen me have about 2 simple partial seizures which really weren't anything because I was just a little confused about what was going on.

But over the weekend he saw me have my first complex partial for his first time, and I ended up having 2 the day he was here.

My husband said he just sat there and watched me have it, smacking my lips together and doing other small things. My husband was asking me all the normal questions when I came out of it, and when he asked me his name I told him and my husband started laughing and was really excited because I can never remember his name. I don't think his son understood why we were laughing about this and other things that I did during the seizure but we always do. (I think it's better to laugh than cry, we both do)

A few hours later he told my husband that he thought I was having another one because I was doing the same things, and sure enough I was. His son had to leave to go to work while I was having the seizure. He always gives me a hug good bye but he didn't know what to do because he couldn't give me one. My husband told him to just go and it would be ok. I know he felt bad about it but I sent him a text hug the next day and he laughed about it.

I'm glad that he finally saw me have a seizure and see how I am and what to do during it because I know he was a little bit nervous about being alone with me. Now that he's finally seen me have one and will know what to do during and after, he's not going to be scared.

 

[qtowngirl]

that's a great question!
I only have simples and grand mals, and before I knew what the s.p's were I just hid them, so...

-first grand mal, boyfriend freaked and called an ambulance
-second grand mal, my dad held me on the floor and tried soothing me (he knew I couldn't hear him but he'd never seen one so it was just human nature), and boyfriend called an ambulance
-third I was in an accident and the guy who parked and ran over told me later he had never seen one either, so he held my head up in my seat and waited for the proper help (said he was pretty scared)
-boyfriend (different one) the first time was quite upset with the first grand mal. He'd never seen one in person and knew I could have one at any time, so when I actually did he did all the right things, watched me close, watched the clock, and took note of all the things I did or noises I made. When I woke up, he had a good grip on me (to keep me from falling out of the car - passenger seat), and the tears were pouring down his face.

 

[MuayThaiFighter]

I'll never forget the first grand mal. I was in a friends car, I felt a strong aura, I blacked out. I panicked and told her to take me to my grandparents house. All I remember is stumbling in their house. Then I heard, "Oh god call 911." Then I wake up to see everyone's face. They all looked terrified.

Post seizure, I don't recall this very well. But I immediately got up and tried to go to the garage to smoke. I guess I was pretty insistent on smoking. Eventually I was corralled to my bed. I don't remember much after that seizure, bits and pieces.

I haven't had a seizure in front of many of my friends. When I would they would usually inform whoever was in the house and stay calm. I just informed everyone not to panic, so it's a relief to know they aren't afraid.

 

[qtowngirl]

Oh god yes, the smoking!!!
Whenever I'm far enough out of a grand mal to know what's happened I'm reaching for my smokes. Seems to be quite the craving considering what my body just went through. You'd think with the headache and all the other lovelies that the thought of a smoke would make you puke, but the total opposite.

 

[RobinN]

I will never forget the first seizure I witnessed.
My baby girl, at the age of 14... Tonic Clonic - called 911
This changed my life forever - most for the positive.

 

[MuayThaiFighter]

I couldn't agree with you more. I could wake up on the floor and the first thing i'm after is a smoke.

I quit though, I was going way overboard with my smoking.

 

[KarenB]

My Mom's pastor was out fishing in a boat in the middle of the lake with his buddy when he had a tonic clonic seizure. At that point in time, he had been seizure free for some time, so most people didn't know he had epilepsy. I think his friend was really freaked out -- as he probably didn't realize what was going on, plus, that boat had to be rocking!

Jonathan's seizures are usually at night, so no one else generally witnesses them. The only ones in public that he's had is once in the department store, and once in the taxi cab, and once while having his MRI.

 

[cazzy]

first big seziour was on tottenem court underground station only memory was grabbing hold of a down and out who was as piss as a fart second one same place...i had horror of travel on undergrounds now

 

[Nakamova]

Some of my friends have been relatively mellow seeing me have a tonic-clonic -- done all the right things, made me comfortable, explained what happened when I emerged out of the fog, etc. Others have completely freaked out and called 911 (even though I've explained that they don't need to), and been a bit traumatized. I've had t-cs in all sorts of places, but mostly I've been so out of it at the time, that others folks reactions didn't even register. I had one t-c at a wine-tasting, and I'm sure the folks running it were pretty upset -- it certainly didn't make their wines look appetizing...

 

[LJ-Bain]

My seizures for the most part are not too dramatic.
Fortunately I have an aura most of the time and I can book it somewhere private.
The rest of the time I have been with trusted friends and family who are able to speak to those who are witnessing them.
They do seem to be alarmed and wonder why my friends and family aren't more freaked out!
Then my friends and family pat my hand and say, oh, she'll be fine. Don't worry about it.

I try to relay to these people afterwards what I feel when everything is going on. It doesn't hurt and I'm not scared and it doesn't last very long most of the time. I just feel sleepy afterwards. It does seem to reassure them. Sometimes people have questions and I'll answer them. I try to use humour to break things up but sometimes that doesn't go over very well!

 

[PFunk]

Since 99% of my seizures are simple partials, no one ever notices, unless I stop talking for a moment to regain grips on reality. I've told some of these stories on a few threads so sorry for the repeat. I've had 4 TC's. First time my coworkers saw me have a seizure, they tried to hold me down (didnt work) and I ended up jumping a cubical. The second was in my car that night with my Dad. I kicked out the windshield and then fought some EMT's, Fire Fighters and Police. The last two were at home in the middle of the night. Gave my wife a heart attack both times. I'm sure waking to a verbose moan and find your hubby seizing is not fun. One time I grad on to her and almost crushed her... kind of scary. I'm always taken back by the expression on every ones face when I come to... even when I know whats happen. I guess if I saw a TC in person, I would understand.... I always say this, it's ironic that I have epilepsy, but never witnessed a TC seizure.

 

[qtowngirl]

I agree. We live with this and talk about this stuff every day, every little detail of our experiences, but we don't know what it looks like. Weird. However, don't know that I'd want to see one. Getting perspective on things is always good, but in our situation I feel why add to all the shit already?

 

[PFunk]

Getting perspective on things is always good, but in our situation I feel why add to all the shit already?

I suppose you're right. What difference would it really make. It's not like we could do anything different when on happens.

I do love the irony of not seeing the affliction that plagues (given that it’s disruptive.)

 

[acpollard2010]

its really scary for someone to see you have a seizure my wife girlfriend at the time i told her i had e but it took about a month of playoff basketball til she saw her firstone and it was bad i lunge in seizures i jumped up on a table and was gowing to swing at her and then bam just started convulsing to the ground i had know clue this happen still dont beaty of this disease dont remember nothin all my family runs.

 

[m1987]

My friends tend to freak out a little bit when they see TCs. However, I think a lot of it might be my fault. The whole thing is still quite new to me (I've still only had 7 TCs - one this morning) so I've been kind of vague with my friends about what's wrong with me in the vain hope that the problem would go away and I could be "normal" again. I'm going to tell them all soon.

But I digress. To sum up, almost everyone around me gets worried when it happens. How long until the stigma around E disappears?

 

[CrunchyFrog]

I don't remember much, I came round in hospital sitting up in bed, it was a strange experience for me and my partner was scared. He said I stopped breathing and because i sleep on my stomach he had a hard time rolling me onto my side. I had a partial in front of a friend once one of the few i've had while awake she didn't know what was going on. My partner is really good now, he's really the person who has had to deal with the worst of it. It's hard because all my friends and the people I work with know about my Epilepsy but, i'm really not sure how they would react if i had one in front of them. Most people probably wouldn't know what to do, I don't think there is enough information. People think of Epilepsy as 'grand mal' seizures and don't realize how many different types of Epilepsy and seizures there are.

 

[Eli]

Oh god yes, the smoking!!!
Whenever I'm far enough out of a grand mal to know what's happened I'm reaching for my smokes. Seems to be quite the craving considering what my body just went through. You'd think with the headache and all the other lovelies that the thought of a smoke would make you puke, but the total opposite.

Sooo true for me too! My husband says sometimes during my nocturnals I reach for a cig but instead of lighting it I eat it.

Whenever I've come to in a hospital I start complaining I want a smoke. I bitch enough they let me out faster!

 

[Eli]

Many of mine happen(ed) at home, my husband is incredibly skilled at the routine. What surprised me was how well my teenage daughter (teen at the time) handled them, very maturely and like a caregiver.

I had a triple once at a large company I worked for. The last thing I remember seeing as I was convulsing on the floor was all these heads popping up over cubicles. You could've sold popcorn for that free show.

 

[Cint]

...... so I've been kind of vague with my friends about what's wrong with me in the vain hope that the problem would go away and I could be "normal" again. I'm going to tell them all soon.

........ How long until the stigma around E disappears?

As long as it takes us to get real with ourselves and tell others what the problem is. Get rid of the vanity.

I've had TC's at home and in public several times. One time, a group had gathered around me and I heard someone say something about calling 911. Then another person said, "No, she's coming out of it." That person kept an eye on me and then gave me a ride home. Another time at the same park, I had another TC, and someone else witnessed the seizure and did call 911.

About a month ago at Starbucks, I had a CP and was with some friends. They were aware of my E, but had never witnessed a seizure. They handled it well, but later told me they were worried. They all made sure I got home safely. I emailed them info from epilepsy.com about seizures, what to do in my case. That helped me.

 

[Cint]

Many of mine happen(ed) at home, What surprised me was how well my teenage daughter (teen at the time) handled them, very maturely and like a caregiver.

Many of mine happened at home also when my kids were growing up, so it didn't surprise me at how well my daughter handled them. She had to because her dad was a pilot and was gone a great deal of the time. Her first witness of a TC was when she was 6 years old. Her daddy was out on a trip, so she called 911. :clap: