Glad when someone sees you have a 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!

valeriedl

VIP
Moderator
Supporter
Messages
5,765
Reaction score
780
Points
268
I was wondering if there's anyone else who's glad when someone who they know has a seizure?

Almost all of my close family and friends have seen me have a seizure when I was first diagnosed with epilepsy because I was having them left and right but very few other people have.

Most people only relate seizures to a tonic clonic and don't realize there are more types than that. Even though you try to describe what a simple or complex partial is they still don't understand. They still think that you are going to fall to the ground and start shaking when you have a seizure.

I was with my husband for about 5 years before his son, who was around 18 then, saw me have a seizure. I know he was afraid to be alone with me because I might have a seizure and he wouldn't know what to do. After he saw me have a complex partial he's fine being alone with me now.

I have a friend who has never actually seen me have a seizure but I had one while I was on the phone with her. I know that it freaked her out just because she wasn't there and couldn't do anything for me. Luckily my husband was home and she called him on his cell phone so he could help.

We had friends over about a month ago. A few hours after they were here my husband told me that I'd had a complex partial seizure that I didn't know I'd had. I'd gotten up and walked around the house. He tried to keep me sitting on the couch but it wouldn't work. Our friends were actually surprised that what I had was a seizure.

I'm not embarrassed that I have epilepsy but it's not like I go around the whole world I have it. If it comes up in a conversation with someone that I haven't seen for a long time why I don't work or drive I tell them why.

I'm just glad that people who I spend a lot of time with finally see me have a seizure and understand what they are like and what I do.
 
A couple of my newer mates over the past few years wanted to see me have one- just so they could have a better understanding of what I had to deal with etc. which I thought was quite sweet.

I'm not embarrassed by it either, by any means, but some of my friends get very upset by them and really hate to see me go through a t-c. I try and tell them I'm the luckiest one in the room at the time lol but it does distress them, so I wish they didn't have to see them.

I was always worried that my mates' kids would find them distressful, but they're brilliant at dealing with them, and although a little bit upset to see me go through it, are fine with it and usually a lot calmer than some of the adults lol

The only ones I want to see me have one are the Atmos assessors, during my disability benefit testing..
 
It helps when the closet people in your life can truly understand what you go through.

But it's more beneficial if the medical community can see them. If there recorded on video even better.

When I was in for my last VEEG session, I was lucky to have two different types of seizures caught on video. The good thing was one of them being a typical CPS I would have. It was always hard to explain these to doctors or nurses. Many of them are not as familiar with CPS. But if you mention Tonic Clonics, they know them quite well.

It was during a CPS when a EMU nurse got a wake up call. When I started to have it a family member pressed the alarm. The nurse came in to find out what was wrong. This nurse was told I was having a CPS, the nurse was puzzled. This EMU was active with tonic clonics going off in other rooms.
The next day it appeared that I was having another CPS. But as a family member pressed the alarm it quickly progressed into a Tonic Clonic.

It's this lack of understanding that makes things harder for everyone with seizures.
Society, media, and even the medical community don't help to clarify that Tonic Clonics are just one type of seizure.
 
I'll be seeing my mother for the 1st time since 2002 over the holiday.

I've never had simple partial seizure around her. she'd tell me like she does wih any sz go lay down befor eyou have another sz.
 
In Sept. a dear friend of mine and I went on a tour of Ireland, Scotland, Wales and England. After we got back, about a month later, another friend of ours and I were talking about the trip and the subject of seizures came up. My other friend said to me, "But what happens when you have one." I kind of didn't know how to respond cause, you all know, it's complicated. So my friend that I went on the tour with said, " Oh, I can tell you. She had 2 while we were there." I didn't even know it and she didn't say anything at the time cause she thought I knew?? Luckily, it was just a momentary aura and passed quickly. My friend had been a teacher so she knew not to make a scene. I was just surprised that it had occurred because I didn't remember.
Goes to show, how different and bewildering is this disease!
Despite that, we had a wonderful time!
M
 
I've had seizure's around my family quite a few times. And yes, I am glad that I've had them while they were around since I don't have aura's to forewarn me of a seizure.

And thank goodness, I don't scare my niece's and nephew's when they happen. They just tell me when I come too that I had one and will describe what I did during it since I will sometimes do some silly things and they'll get a laugh out if it!
 
It depends on what type of seizure I experience. I don't like having the type of seizure everyone immediately thinks of, a TC in public, because if I'm out on my own, 911 is immediately called and I HATE THAT!! Fortunately, that hasn't happened for over 10 years now. But if I have only a CP with an aura, I'm not really happy that someone has witnessed it, just relieved that they now know what the hell I have been talking about for years. They know why I am SO spacey at times and why I haven't been driving or had a job for years, either.
 
It helps people understand the difficulties I face when they do witness me having a seizure, however it's still embarrassing for me. I hate being that vulnerable around anyone, it hurts me that my 2 year old nephew is scared of me. I have multiple types of seizures very frequently so everyone I know and probably a lot of people I don't know have seen me have a seizure. Whether or not they know it was a seizure I'm not sure. Happy probably isn't the best word.
 
I personally get embarrassed and feel ashamed when someone sees me having a seizure.

Makes me feel like a low level lunatic alien idiot who needs drugs to try and seem normal.
 
I personally get embarrassed and feel ashamed when someone sees me having a seizure.

Makes me feel like a low level lunatic alien idiot who needs drugs to try and seem normal.

I totally sympathise with you there. I'm usually around people who at least know I have seizures, but when I'm in the computer labs at uni I'm always worrying about having one because its so embarrassing when I slam face first down on to the keyboard, especially when the sound is on because it starts beeping :S

What type of seizures do you have? Mine are complex partial and atonic and I almost wish they were tonic-clonic so that people knew it was a seizure on sight. Don't get me wrong though I have witnessed a tonic-clonic and it looks terrifying, but its also what tv portrays as a seizure so people would be more likely to know whats going on rather than just looking like I've passed out.
 
What type of seizures do you have? Mine are complex partial and atonic and I almost wish they were tonic-clonic so that people knew it was a seizure on sight. Don't get me wrong though I have witnessed a tonic-clonic and it looks terrifying, but its also what tv portrays as a seizure so people would be more likely to know whats going on rather than just looking like I've passed out.

Ok, I know you were asking George, but if you read my posting, I HAVE had TCs and CPs in public! TCs are the worse type to experience in public because people go crazy and PANIC! Nothing worse than having people behave like stupid jerks and calling 911. Then the paramedics take me to the hospital and I end up having to pay the bill!
 
Last edited:
Ok, I know you were asking George, but if you read my posting, I HAVE had TCs and CPs in public! TCs are the worse type to experience in public because people go crazy and PANIC! Nothing worse than having people behave like stupid jerks and calling 911. Then the paramedics take me to the hospital and I end up having to pay the bill!

Thats a good point, people do go nuts about it, I guess here having an ambulance called isn't such a big deal because we don't have to pay for anything in the public health system and there is a donation service for our ambulances that if you pay something like $50 a year, which is what one trip costs anyway, you don't have to pay for any call outs. Also most of the paramedics know enough about seizures to determine whether someone actually needs to go to the hospital, they'll stay till you have come out of postical but 9 times out of 10 they wont take you to hospital unless its ongoing or you've been hurt.
 
What type of seizures do you have? Mine are complex partial and atonic and I almost wish they were tonic-clonic so that people knew it was a seizure on sight. Don't get me wrong though I have witnessed a tonic-clonic and it looks terrifying, but its also what tv portrays as a seizure so people would be more likely to know whats going on rather than just looking like I've passed out.

I completely agree with what you said about how TV and movies portray what a seizure looks like. When I tell someone that I have epilepsy I'll sometimes get looked at like I'm going to fall to the ground any minute and start shaking like the devil has a hold of me! The Exceroist has a good example of a TV/movie seizure.

Ok, I know you were asking George, but if you read my posting, I HAVE had TCs and CPs in public! TCs are the worse type to experience in public because people go crazy and PANIC! Nothing worse than having people behave like stupid jerks and calling 911. Then the paramedics take me to the hospital and I end up having to pay the bill!

My mom freaks out when I have a TC, at home or in public, and always calls 911 right away. She doesn't wait a few minutes to see if I start to come out of the seizure. I've always been out of the seizure before the ambulance even gets there. The last time she did this I got a bill for over $100. I gave it to her to pay because she was the one who called for the ambulance when everyone else told her not to and wait.
 
I completely agree with what you said about how TV and movies portray what a seizure looks like. When I tell someone that I have epilepsy I'll sometimes get looked at like I'm going to fall to the ground any minute and start shaking like the devil has a hold of me! The Exceroist has a good example of a TV/movie seizure.

I've gotten really bad at yelling at the TV when they do things like holding people down or sticking their fingers in their mouths, aka doing everything you're not supposed to do when someone has a seizure.

When I have seizures, people who know about them but have never seen them are like "Is she having a seizure?" "I don't know, is that what a seizure looks like?" "Maybe shes passed out or something" "Should we do something?" "Maybe we should put her on the ground?", its bad but I find it a little funny because obviously I can hear whats going on but they just assume I'm completely out to it. Then I usually come round before they have agreed what to do. I have one around people who don't know they just think I've fainted.

But the people who know I have seizures and have seen me have them just make sure I don't fall down, which I usually do, kinda hard to catch someone when they drop without warning, then they just leave me to it til I come round.
 
I usually let people know to try and catch me when I drop into a t-c, and put a cushion/coat underneath my head or hold it up slightly so it's not slamming against the floor, but not to restrain me in any other way lol

I also tell them I'll bite their fingers off if they try put them in my mouth :p
 
I don't mind now when someone I know sees me, because they know not to call 911 now. It would be "nice" in a way for others to see me have one, to get the shock over with I guess. What I've found out is that I have TCs during the sleep too, which I had a girl spending the night to find out. Since, I've had to pay more attention to my mornings and pay attention to injuries - bare feet abrasions, wet bed, head knocks, and obviously if I wake up on the floor.
But having witnesses does have its advantages for me - as long as it is among people who know and have seen me already. No ambulances please.
 
I feel like we need to have "DON'T CALL AN AMBULANCE" tattooed on our foreheads or have the emergency services number blocked.
 
Back
Top Bottom