How Should a Person Feel After Having a Seizure in Publc?

[acshuman]

I have never let the fact that I have had a seizure bother me. If I have had a seizure I just wait until I feel OK and continue on with my activities that I was doing.
Luckily, my seizures have been of the Absence type and it hasn't taken long for me to have a clear head again. The worst times have been when someone calls for an ambulance and I am taken to an Emergency Room. Not only is this upsetting for me, it also hits me in the bank account. This is because the ambulance companies have expected me to pay for their services, which were NOT needed in the first place.
I am sure others have been taken to an ER and NOT needed the service! This can be a very negative thing when it comes to having to pay for these trips.
I had to declare bankruptcy once because of all the bills I owed these companies!:twocents:

 

[Belinda5000]

Everyone can react differently because they have a sz in public, and there is not certain way anyone should feel. I've had sz's since i was a child in public and I don't get hung up about it I can't help it. I get angry when ppl over react about my sz's. I say that's life and just go on with it.

 

[acshuman]

reactions

That is the same way I feel. If someone doesn't like that I had a seizure, tough. I am the one having it, so if you don't like me because of it, that is your problem, not mine!:twocents:

ACsHuman

 

[Loopy Lou]

Well, when i've had partials in public, people haven't recognised them and wouldn't think to call an ambulance if they did (thankfully!), and the few times i've had a tonic clonic in public, i was pretty much out for the count so i don't remember much of it.

It has left me with a fair bit of anxiety whenever i go out though in case it happens again though. I'd rather people didn't call an ambulance, because then i end up sitting in A&E for hours when i just want to go to sleep, but at least i don't have to pay for it i guess.

Amongst people who know me, i'm getting a bit of a reputation of a dopey bugger, but i'd rather have people joking that i'm "getting blood in my caffeine stream" than freaking out every time i have a blank or appear muddled.

 

[Nakamova]

I think the default reaction for most people is to call for an ambulance. I guess that's to be expected if it's a stranger observing the seizure -- they have no way of knowing what's going on or how serious it is. But even my friends who knew about my epilepsy would call for an ambulance. Eventually they got the message that if I wasn't hurt, I didn't need to go to the ER (especially because it would cost me in ambulance and ER fees).

It's been awhile since I've had a seizure, but in the past I had quite a few t-c's in public-- on the beach, at a parade, at work, etc. The public part didn't bother me; as Lou notes, you're out for the count, so no bothersome memory of the event. I think if someone videotaped me while I was having a seizure and then I watched the tape that might be more distressing.

 

[Porkette]

Hi AC,
I've had many sz. in the public school where I work in front of students and staff but I don't let it bother me. I've learned that if I am open about my epilepsy and tell everyone about it that they understand a lot better than if I keep it quiet. The one time it bothered me is when I went to my family Dr. for a check up and had a tonic clonic sz. as I was leaving the office and when I came to Three Drs. were standing there and they called an ambulance after they told me they didn't know what to do. I had to go to the hospital and I wasn't to pleased with the Drs. telling me they didn't know what to do so that ended it for me going to see that Dr. and I found a different family Dr. Other than that all has been well with others seeing me have a sz. in public. I wish you only the best and May God Bless You!

Sue

 

[Sabbo]

If I have a Simple Partial, its usually ok. The problem is/can be when I have a Complex Partial. My Simple Partial seizures normally last about 2 minutes. I'm often aware of what is around me. The Complex ones are when/where I've injured myself.

 

[Belinda5000]

you can always refuse an ambulance; I have refused many.

Now when your at the hospital that's an entirely different story everyone just seems to freak out Dr's and nurses alike.

 

[Cint]

I've had numerous CP's that have gone into secondary TC seizures. When they happened at home, my family knows what to do/not to do. But the times they have happened in public, 911 has been called. It's very scary for the public to see if they've never seen one before, especially if the person is lying there unconscious, shaking all over the place and then turns blue. How would YOU feel if you had never witnessed such a thing? Even my kids at one time were scared. They thought their mom was dying! So it doesn't bother me if they call an ambulance, just making sure I am not injured again, because injuries can/do happen during a TC seizure. People can die if it goes status.
I am amazed at the stories being told of the ER docs not knowing what to do if a patient comes in having seizures. Seems to me the hospital desperately needs training.
Lastly, the times I was taken to the ER by ambulance, my insurance DID pay for most of it. Check out your policy, acshuman. Even medicare/medicaid pays for most of it.

 

[Elaine H]

Hi Acshuman There is no written law as to how we must feel or behave after a seizure in public, I regularly have Atonics in the small town where I live, and my Post-Ictal must last quite a while, as I don't very often know anything about it until I'm being looked after, then I'll look back and feel slightly upset and remorseful about it. I also sometimes get angry when people call an ambulance, but that's what usually happens. When I only used to have Simple and Complex Partials, I'd be more embarrassed in public, because I used to do some really weird stuff, I undressed once at work, I'd start talking to complete strangers, so at least with collapsing, I feel people will help out, although I've had several very nasty injuries recently.
You have the right attitude when you say, if people don't like it when we have a seizure, tough, don't damn well look!!!!! There is no reason on earth why any of us should feel embarrassed when we have a seizure in public, and I always say when I give my talks on Epilepsy, it isn't us that have a problem with the condition it's society.

 

[acshuman]

Seizure Smart talks

Elaine H,
I have given talks to students in their school for many years. My favorite response from a student was 'But you look normal'. I had that statement made to me by a student after I told the class that I had E! This just showed me how many people think, when it comes to E. I'm sure that this kid had heard their parents talk about people w/E being so strange in a crazy way.
It's too bad that that is what so many people believe. That kind of thinking is normally going to be the head of a person who is fearful of learning about anything that is different from themselves in any way! The kids just do or say what the parents have done.

ACsHuman

 

[Cint]

I also used to speak to classes where my kids went to school about E. Usually the kids only asked questions out of curiosity. I never had a kid say, "you look normal." That was the reason I was speaking to kids about E. To help get rid of this nasty stigma. But I have had many adults say that to me. Even had a nurse say, "you don't look like you have E" once. I felt like replying to her, "you don't look stupid." But I kept my mouth shut.

 

[acshuman]

Stigma

Cint,
I know what you mean when it comes to so-called 'medical professionals'. I think many times that I have taught them more about E than they knew before they had met and talked with me.
When I have checked, I have seen that the total of the knowledge about E that is taught to non-specialists fits into 1 paragraph in their textbooks. It seems as though learning about E isn't important unless you are going to be a neurologist or epileptologist!
This tells us that even the medical schools don't think E is important enough to spend any time teaching!

ACsHumanonder:

 

[Frink]

I feel the same way after a seizure in public as I do after a seizure in private, a bit confused, headache, sweaty, I would really like to take a nap, usually a whole bunch of DUH! until my brain finishes rebooting.

 

[marika853]

Back in Aug. 2015 I was sitting in a meeting with about 50 people and suddenly the 2 ladies I was sitting with and the speaker were tapping me on the back and telling me, "Everything is going to be ok." It only lasted about 2 minutes. By the time the ambulance came I was totally "back". The emts didn't think it was a seizure cause I was already aware. The guest speaker, who happened to be a nurse, told them that it indeed was a seizure. I did not go to the hospital. My friends drove me home and called my neighbor over and 20 minutes later, while I was sitting with her, had another . She called 911. Same guys came out and told me they can't keep coming out so I did end up going to the hospital.
The point of this long story is that the emts didn't even know about E and how differently it can manifest itself. How do we expect others to know about it unless we educate them.
M

 

[lrjg]

I was not having seizures that lasted very long. I learned (the websight some of us have just come from) to let a paramedic know that you do not need to go to the hospital unless.....it was your first GM. Or.....many paramedics know not to bring patients in who have just had one. In my case the last time, I had a GM for the first time. I remembered what I was told about going in if it was the first. It was sooooo good that I learned that! It was when I was able to talk, I let them know of my other medical condition (insulin dependant Diabetic) This is when I learned that this GM was caused by my blood sugar registering at zero! We could not figure out how I was even conscious at that time. I learned later why my blood sugar went so low to cause a GM. I wear an insulin pump and somehow the syringe came unscrewed and I just screwed it back in. This somehow injected a bunch in all at the same time. I was taken in to the hospital and learned that was just the beginning of my blood sugar going so low. Soooo, happy that I learned to go in to the hospital if it was your first GM!

 

[Cint]

The point of this long story is that the emts didn't even know about E and how differently it can manifest itself. How do we expect others to know about it unless we educate them.
M

And educate those who you work with, also. Why did they call the EMTs if the seizure only lasted a few minutes? My kids didn't call 911 EVERY time they saw me have a CP seizure. And not every time I went into a TC. They knew only to call 911 if the seizure lasted 5 minutes or if I had injured myself. Like you said, educate the outsiders.

 

[Cint]

I was not having seizures that lasted very long. I learned (the websight some of us have just come from) to let a paramedic know that you do not need to go to the hospital unless.....it was your first GM. Or.....many paramedics know not to bring patients in who have just had one. In my case the last time, I had a GM for the first time. I remembered what I was told about going in if it was the first. It was sooooo good that I learned that! It was when I was able to talk, I let them know of my other medical condition (insulin dependant Diabetic)

I also have Type 1 Diabetes and take insulin. I've had several seizures due to low blood sugar and was taken to the ER because of them. My blood sugar was in the 40's and for me that can cause a seizure. All the paramedics that I've dealt with have known to check my blood sugar along with all other vitals. I have gone status before.

Soooo, happy that I learned to go in to the hospital if it was your first GM!

Be happy that it was only your first!

 

[lrjg]

Cint, I am glad that I don't have seizures if my blood sugar goes in the 40's. Even though I have the insulin pump and a continuous glucose sensor on me, I still get this low all of the time. The other thing I didn't mention on here is how long to go before calling for help. It was in the middle of the night that I had this GM because of my sugar. My husband doesn't know how long I had been seizing. He was getting mad at me because I kept pulling the blanket off of him and kicking him. It was learned after I smacked him in the head to get up and turning the light on to ask why I hit him! This is when he learned I was having the seizure. It went on for too long, so he called the paramedics. It was at least 15 minutes that I had been seizing and I woke up from it when the paramedics were coming upstairs. I knew something wasn't right because my heart was beating probably 300 beats a minute! Before getting my insulin pump 29 years ago, I was found unconscious toooo many times.

 

[Cint]

It was in the middle of the night that I had this GM because of my sugar. My husband doesn't know how long I had been seizing. He was getting mad at me because I kept pulling the blanket off of him and kicking him. It was learned after I smacked him in the head to get up and turning the light on to ask why I hit him! This is when he learned I was having the seizure. It went on for too long, so he called the paramedics. It was at least 15 minutes that I had been seizing and I woke up from it when the paramedics were coming upstairs.

onder: How could you have been seizing for 15 minutes without your husband knowing if he was lying next to you in bed? Especially if it was a TC? That makes absolutely no sense to me. I've had a few TCs in bed when I was still married and my husband knew right away. He said I hit him, too.

I knew something wasn't right because my heart was beating probably 300 beats a minute! Before getting my insulin pump 29 years ago, I was found unconscious toooo many times.

They said I didn't qualify for the insulin pump because I already had the VNS for seizures, so I have to do shots.