Embarassed having seizures in public?

[valeriedl]

I was wondering how many people are embarrassed when they have a seizure in public?

It doesn't bother me at all, it takes a lot to embarrass me. When who ever I'm with tells me the things that I've done during it I generally get a good laugh about it.

One of the funniest things, to me at lest, are what other people do. Sometimes I get some goofy looks because they have no idea what's going on with me and wonder why I'm doing it.

A time I had a GM in public I was laying on the ground shaking like crazy. My husband said the people walking past us, keeping their distance, were looking at me like I was something out of a horror movie possessed by the devil.

I once had a seizure in a check out line where I just sat down on the floor and wouldn't move. My husband kept trying to get me up explaining that I was having a seizure to the people around us. A woman came up and offered a him a mint for me because 'she heard that helped sometimes' onder:

 

[Gillette]

A mint ... mmm ... interesting... was that just so you had fresh breath just in case you needed mouth to mouth in case things went wrong? L.O.L

Isn't it funny how uneducated about epilepsy people really are considering how long it has actually been within our society, I actually think people are nervous and scared about it and others are terrified just in case they are going to catch it.

I have actually had people asking me if I am all better yet!

I'm not too sure whether it's stupidity or if they genuinely don't know about it.

For me I hate having seizures in public. I do get embarrassed and when I feel them come on I get myself in a state of total panic. Thankfully I have only had 2 in public but even that was 2 too much for me and took me a while to get over and face the demon as such again, as in go back to the place where I had them, as one was the local pub. Luckily for me it was a quiet night .... phew!

I think it's more I hate the fuss, I don't like attention, I am more of a blend into the back ground type of person and then all of a sudden for a seizure to happen it's all eyes on me and for the wrong reason. Then you have the attention again with people asking if you are okay after it when you see them again and repeating the same stuff over and over again. That's when you want to have a sandwich board on with I am okay thanks! or to make and announcement when you go somewhere so that you get it over and done with as that's all people want to talk to you about and you are more than your epilepsy you are a person with other interests or at least you were!

I wish I had your take on it valeriedl it might make it quicker to get over each time it happens.

Stay strong and carry your own mints

 

[Sparkles]

I do get embarrassed. I had one on a public street, fell and broke my thumb and still have a shoulder issue from that fall. And the shoppers on the street just looked at me like I was on something or contagious with a deadly disease. Not one person tried to help. I had to use a street sign to get to my feet after several attempts. It turns out a student from campus saw what happened and did follow me back to my office noticing I wasn't walking right and my coworkers called 911, which really wasn't necessary but since I'm unable to talk much post seizure initially I couldn't argue. I was horrified. It bothers me that people think I'm on drugs or some kind of zombie (that's how it was described to me) and that when I fell and couldn't get up no one did anything. Now I have a medic alert bracelet so maybe that woud help. It doesn't help tht I can't talk in the midst of the seizure and don't make much sense for a little while after, but my hope it that my brain will allow me to point to the bracelet. I wish I wouldn't get embarrassed, but I do. When I had to return to work after the first time it happened there and the EMTs came and all of the disruption I hid out in my office as much as I could. Now that they know I'm not as embarrassed but because I can't remember much for a period of time surrounding the seizure I do wonder just why I am saying and doing! Last November I put up a sign on my door for epilepsy awareness month with information about seizures and what to do during a seizure. The more people can be educated the better and maybe the less embarrassed we will be?

 

[pita300]

I won't say I get embarrassed. Its more the attention it draws to me. I was out to dinner just recently. I had a number of seizures. My seizures will draw the attention of anybody around me. When your arm is sticking up in the air and fingers are going crazy all the while i'm sticking my tongue out and chewing on it all while my eyes are blinking. So to say the least it draws a lot of attention. When I'm with my mother so always tells everyone "its ok he's just having a seizure" So for me its defiantly the attention

 

[Nakamova]

In general I'm fairly self-conscious, but having a number of tonic-clonics in public has made me less so. I think it helps that I'm unconscious throughout and have no memory of the event. It just doesn't faze me at this point. I think the people who witness it (including my friends) are more uncomfortable about it than I am.

But I could see how it might be trickier if you have partials or myoclonics, esp. since folks are less familiar with those forms of epilepsy.

 

[Cint]

I've had many CP's in public before and several TC's. Several times I've had a TC when out on a walk by myself, 911 has been called. But it didn't embarrass me. The way I look at it, it is part of my life I used to tell my children, epilepsy is nothing to be afraid of or ashamed of. It is a medical condition, the same as my son's asthma is a medical condition. Sometimes we had to get him to the hospital because he had a bad case of asthma and even the treatment at home with a nebulizer wouldn't work. As my son says, "It is what it is."

And as Sparkles says, Education is the key! The more people will know about all the different types of seizures, the less there is to be embarrassed about!

 

[daviscy60]

Wish I could say no, but.... I'm starting to find the best way for me to deal with this is take meds without thinking about it (side effects and such)... Try to live my life as normal as I can. Hard to do this when going thru change like I am now but I just have to keep reminding myself to just forget about it. Take meds as though I'm a robot. Took someone's advice and at wrk yesterday tried to tell the guy I sit with just so that he would know. Was a VERY hard thing to do and when I was finished I was embarrassed and wishing I had just kept my mouth shut. He asked, "well, what do we do"? I told him... Just kick me under the desk and leave me. I was carried out on April and in May. Even though I do not hear all the gossip about it I was almost sure he knew. Since the 2 issues I have been moved from 1st to 2nd shift and also have a different supervisor. Not sure how much they know or don't know. I'm taking so much stuff now that I'm almost sure it won't happen again. So maybe it's time for me to forget all about it again... Although have to go back to neurologist in 4 weeks. Went yesterday after having an EEG in her office on the 1st. I had my Dilantin increased from 300 to 400. Told my daughter it would not show anything. I was wrong.... Must I say I was even embarrassed to go back there yesterday. I have to try to be compliant though because I can't afford to lose my job.

Back in December it happened at a store while waiting for a gift wrap. Don't feel like I can go back in that store ever again. Afraid they might recognize me....

 

[Knytecraller]

It used to never bother me

But, now I'm so scared to have one in public. I'm a makeup artist, and work at a Nordstrom. How can I continue my life knowing it can happen at any second? While I put this lash on you, just give me a minute while I bug out for a few minutes.

Knyte:e:

 

[valeriedl]

Maybe you could only put makeup on people who are in rock bands? If you have a seizure while doing it they could be painted up like Kiss!

(hope that made you laugh)

 

[Knytecraller]

Ha! Maybe valeriedi

 

[Cint]

Back in December it happened at a store while waiting for a gift wrap. Don't feel like I can go back in that store ever again. Afraid they might recognize me....

And if they do recognize you, so what will happen? Please, don't let E take control of your life.

I was once in a Barnes and Noble book store and witnessed a nice looking young fellow go into a TC seizure. I really felt bad for him and waited until he regained his composure to make sure he was ok. It was then that I heard and saw what others say and do when they witness seizures. One woman said "he was probably on drugs for that to happen". Foolish people make foolish remarks. Educate yourselves and loved ones about E!

http://www.epilepsy.com/101/101_epilepsy

 

[Belinda5000]

I'll never understand why people get embarrassed because they have a seizure in public?

you can't control that your having a seizure. The only time it bothers me is when I've been in the lobby at my neuro's hospital and will have a seizure. I usually just get angry about it.

Belinda

 

[BIGMAN131307]

I've had numerous CPS in public. When I'm with family and friends they know enough to just wait it out. If it's a typical CPS for me, I'm fine in about five minutes. But when I'm alone other people are stupid. They immediately want to call 911. Then I end up having to fight with the paramedics. Unless I hurt myself, or keep having seizures, leave me alone. Any additional stress will cause me to have more.

The majority of the population don't understand that there are many types of seizures besides tonic clonics. I blame the medical community, media, and the entertainment industry.

 

[Belinda5000]

I HAVE Complex partial,simple,partial,tonic-clonic out in public.
But unless I'm hurt enough for the e/r and bleeding profusely leave me alone.
I can come out my seizures fast sometime.
When I come out of them I'm alert and just want to be left alone. I will argue with paramedics.:soap:

 

[SlimBlue]

I can't say I'm really embarassed by them, it's more dealing with the hassle after a t-c that does my head in- especially if the paras have been called. I've woken up in pools of blood and urine on the pavement etc but I'm usually more concerned with checking if anyone's nicked my phone lol

Also, if it's a bummer on a good night out with my mates. Nobody wants to be Captain Buzzkill, right? Even though they're all used to it now, and 'fine' with it.

I have to say though, I've never really given a toss about things like public embarassment, and there are several vids of me around doing 'streaks' in various city centres

 

[QueenieKP]

I don't get embarrassed per se, but do prefer a bit of privacy I have about 45 seconds so if I am in a building it's usually long enough to get to the disabled loo. I don't know why I just run for the bathroom. If I am somewhere where I know I can't run it really discombobulates me as I know I have to lay down where I am standing and it's the conscious and waiting afterwards I am unconscious and the post ictal and talking so much drivel about pterodactyls I couldn't really care less.

Most people are used to it, if they're not and don't have a little compassion for their fellow human being *insert naughty expletive* them. They're the ones that should be embarrassed for their ignorance!

Q

 

[JaneP]

I once had a seizure in a check out line where I just sat down on the floor and wouldn't move. My husband kept trying to get me up explaining that I was having a seizure to the people around us. A woman came up and offered a him a mint for me because 'she heard that helped sometimes' onder:

You have me curious about this one. I'll have to check it out. I've never heard of mint. I know mint is an excellent anti-bacterial, viral & fungal agent but I gotta' check into the seizure thing.
Lavender oil is an excellent relaxant. I've used it for years. I know I've mentioned before that 2 M.D.'s have seen this stuff stop my seizures in SECONDS -the last one just a few weeks ago. (Makes a total of 3 times now this has happened in front of doctors) Like, how long I can't help but wonder, is it going to take the medical community to stop snuggling up to the giant greedy drug companies and admit -especially when they see it first hand- that there ARE better ways put on this earth? *rolls eyes*
I said somewhere earlier today that it's more the wonder what most people are going to think when I can't verbalize what's wrong when they ask. The biggest embarrassment is what happens AFTERWARDS -and knowing I don't have a change of clothes next to me. (Even the adult diapers don't always help 100% -especially on the sides if I happen to be laying that way

 

[QueenieKP]

When I was shopping for wedding dresses, I made my fiancé Mr Q leave me unchaperoned for half an hour, had a seizure whilst trying on a gown. When he came back to retrieve me one the assistants told him 'Your wife has had a hypo but she is ok' he came in to find me still wearing my DM's, in a meringue dress, eating jam from a jar with a spoon.

He nearly went himself laughing and said she has epilepsy not diabetes. Well they couldn't get me out of that dress quick enough, but I was kinda in a belligerent mood so didn't take kindly to having my prized pot of jam removed from me. Now this was 20 years ago and hopefully first aid in the work place people would be able to tell the difference between a seizure and hypo (although people with diabetes can obviously have seizures that tend not to come on quite as suddenly as ours).

Q

 

[valeriedl]

(although people with diabetes can obviously have seizures that tend not to come on quite as suddenly as ours).

Q

My grandma started having seizures out of the blue and she's 84. The dr thought they were at least because most of them were happening while she was in bed asleep. She'd wake up on the floor because she fell out of bed.

She had others infront of my grandpap that he thought were probably partials.

When she went to dr turned out she has diabetes. Now that she's got her diabetes under control the seizures have stopped.

 

[cadsgj]

Interesting replies. Me, embarrassed - no. Seizures around others - not if I can get away when others are there. Why? I have seen... people who want to help but really know nothing about seizures; people who know about seizures but like to make jokes about them after they are past; people who know about seizures but do not feel comfortable helping one in the midst of a seizure; and much more. In my life it has been rare when there is one who knows about seizures and is willing to help as they could/should while at the same time not talking negatively (joking negative too) about it after it is past. I have even had a seizure in front of one who after it was over stated they were not sure it was even a seizure - why, because at that time it wasn't a grand mal, only a simple or complex partial? Me, no not embarrased, just not wanting to deal with most which I came across in roughly 18 years.