I have had epilepsy since I was 9 yrs. old and am now 42 and can't even count the amount of times I have had seiz. in front of other people. So, what's so embarrasing about dropping on your face jerking, slobbering and peeing your pants in front of other people? :0 .
As a kid,(teenager) we all use to go to the dance club to hang out with our friends, but the strobe lites of course caused me to have seiz., but because I didn't want to be left alone while all my friends got to go have fun, I would suck it up and take the chance of having another seiz. in front of all my friends and it usually happened.
Having this happen in front of others is SOOOO embarrasing, but I can't let it rule my life.
I work at JC Penneys in the mall and I have had a grand mal 2 different times while working. Waking up with EMTs around you, not knowing your name and customers wondering what is going on.
One thing that I really hate and find embarrasing about the seiz. is how it can make you look afterwards. I had fallen on my face so many times having seiz. that my front tooth actually turned black. I went on with that for 4 yrs. Evidently the guys liked me for my personality, because I actually had boyfriends after that and even got married. LOL. After over 30 yrs. of meds. my gums are swollen up and that one tooth that was black shows off even more even though I have a crown on it. I think it looks aweful, but I can't let all of this stop me from smiling. And of course if you're going to be falling on your face then you are more than likely going to bust open different spots needing stitches. It looks pretty silly being a women looking like you have little black hairs coming out of your lip or chin. I sware, I must REALLY have a good personality.:)...
Usually if I feel a petit come on I try to walk away or in another direction and then I will come back around when I feel like I am back in touch with the world around me.
Yeah, it's embarrasing, but we just have to deal with it.
Take care.

Tomi,
What a sweet reply. I havent let it stop me from doing as much as I can. You are such a brave woman! I am so proud of you. Bless you and keep smiling!
Jenn

I have the petit mal & grand mal seizures and I get so embarassed too. It's usually not too bad until recently, I was visiting my parents and had one while it was just me and my father, I had been asleep and my father heard me scream out and ran into the bedroom and found me having a grand mal seizure. I wasn't told until later when I woke up at the hospital that I had completely removed everything I was wearing in front of my father. I was so embarassed I couldn't even speak about it around him. I still have no memory of it whatsoever and i'm thankful of that. My husband and mother also tell me my face turns pale right before I have the petit mals but I think it's b/c they scare me too (b/c a grand mal usually follows). I also jerk in my sleep a lot. If it wasn't for Depakote i'd be a mess.

Thank you Samantha. Im glad you understand and I am so sorry that you stil have the really bad grand-mal seizures. God bless.

Hello Jenn,

Here is my 'flip side' to that question. No! : 0 I guess, since my family & friends always treated our 'episodes' as normal. (younger Sis & I) I never thought to be embarrassed. Plus, I didn't understand/know just what a seizure involved. I never felt them. Have never seen one. (I know the internet has videos. Not interested) No one ever tells me what I did. (except, lately) I have only been told the Gran Mals/tonic-clonics ain't nice to watch. And Family/Friends ain't worried, cuz, I have 'lost time' moments. So neither am I. Concerned, at times, but, I get over it. :)

At first, I was 'Mad' but, not cuz I had seizures. Just mad cuz they ruined my 'Life Plan' to better myself. Then 'confused' cuz I thought 1 mth of meds & I was 'cured' (Boy, was I 'naive'? or else everything or anything my 1st neuro told me went in 1 ear & out the other. :) ) Then came Denial. Then, 3 mths later, came awareness. But, not knowing what to do or where to turn to for help, I literally ran away from my problems. Taking them w/ me from TX. to Maine & back. "Scared' happened a yr later. I awoke B4 dawn in my GF's bathroom covered in blood from a gash above my eye. Required stitches. I was, finally, forced to face facts & made an appt at the County Hospital that had sewed me up. :) Mad came again, Yrs later, when I discovered I had seizures as an infant/toddler & possibly grew up w/ them & hadn't been told. Mad, when Yrs after that, I was told my Sis grew up w/ seizures, off & on. (becoming predominant at age 12? Diagnosed as Catamenial (hormone imbalance) at age 52.) I lived w/ her & Hubby & was told she only had 'nocturnal' seizures. But, I swear I noted the 'lost' moments. Just didn't realize they were seizures.
I did note my Sis would go white & or red during her 'lost' moments. A sign that she wasn't feeling rite.
Sooooo,
Through all my yrs I have never thought to be 'embarrassed'. I, openly, tell others (whether they like it or not) about my seizures & now, I tell them what they should watch for. :)

Family & friends have continued to treat me & my seizure disorder as Normal. I have been doing my 'homework' over the past 15 yrs. NORMAL is what I am. I am no longer Mad, Confused, Angry. Shoot, I ain't even embarrassed cuz I forgot someone's name or something I said or something I did cuz, I know it all comes w/ Epilepsy. What ya gonna do?

Me? I'm gonna continue to live One Day at a Time. And Enjoy!

Love Candi

Thank you Candi for your post,
Let me be clear, I am not embarrassed when it happens in front of my family or friends. They know what is going on. I also did not get treatment right away. The Army kept telling my mom that I was 'just a bad kid'. There was nothing wrong with me.
I finally checked into a mental hospital when I was 25; and did absolutely nothing to hide it. When I got out I was a pariah in my small town for awhile. People just didn't know what to say or expect I guess.
Anyway, I did begin to tell people about the brain damage that causes my seizures. More specifically the cyst on my brain that causes them. Now people just say, "There goes that woman with brain damage.' I didn't think people could be so cruel.
Anyway, I live my life to the fullest. I help my neighbors when I can. I am in the Eastern Stars and hold an office. I am a Red Hatter, (although I only qualify for a Pink Hat right now). I am the princess of our group and help out as much as I can. I live my life. I have lots of love and support; but dammit, sometimes I just want to be normal!

I understand what you mean. I have complex partial seizures that resembles psychosis. People are not aware of this type so it's even harder. I have auras, but I do not have a seizure after each one. I just hope there's always someone that will help me.

Chisom,
Thanks its good to have someone understand. My doc told me to make it easier I call the Complex partial Seizures peti-mal seizures. I guess that is what you call auras.
Im a mess. But my friends and family are used to me by now. Sometimes I just blurt stuff out. Even people at my grocery store are used to me.
It's when Im in an interview (job) or at school or my husband's job or some other function that it gets to me.

Poqo...
I know what you mean when you say you would just like to be normal! I can't go swimming in the pool by myself, I DEFINATELY can't drive; last time I did I had a grand mal and I ran into a couples trailor house while they were sleeping. Although I do have a drink now and then I can't drink near as much as the rest of the bunch. I could go on for hours. You know the routine.
By the way, thank you for the wonderful compliments. I really appreciate them.
Were you born with the cyst on your brain? Is it something that can be surgically removed?
What causes my epilepsy is what's called "Left Hippocampal Sclerosis" and meds. don't do one damn thing for me. Well maybe a little, at least I'm not having grand mals ALL the time. A Temporal Lobectomy is the only thing that can help me out. I found a clinical research trial that involves surgery and have qualified to be in it. Now I just wait for it to get started.

I'm so glad that when I have partial seizures I don't pee myself. My seizures are mostly with me being unable to talk coherently, read, write, understand what someone is saying, anything to do with language. When I was teaching high school I was being switched from one med to another and the first day I was completely off the old med it just cut loose. We were covering important material the day before a big acheivement test and I really wanted to get thru it. But it was a total loss. It was a Friday and Monday when the kids were off taking their tests I told my boss about it and told him I was concerned that the kids might have thought I was drunk. I never heard anything else about it.

I don't go out much at all because of the fear of having one in public.

My seizures didn't start until 2 years ago (I'm 27). Not only do I have a kidney disease I also have to deal with seizures where medications only lessen them, not stop them completely. I have auras sometimes and sometimes I don't.

Recently, when I did go out I realized something about myself. I couldn't get the bar waitress's attention...I could barely mutter an excuse me while passing people. I kept my head down to avoid eye contact. I just felt like the whole place was going to crush me at any moment. It was very scary. I had always been such a confident and outgoing person.

I'm no longer that way and I wonder where it got lost. I don't want to say I'm not normal because this is the normal me now, ya know?

Maybe we shouldn't focus on who we once were but who we are now?

anyways, I understand what you feel and all I can say is what Dr. Seuss said: Be Who You Are and Say What You Feel Because Those Who Mind Don't Matter and Those Who Matter Don't Mind.

:)

Thanks for the support, Jenn. I have found that I don't like crowds as much as I used to. But I still make myself go out. I'd go crazy if I didn't once in awhile.
In really crowded places I get kinda claustrophobic. Like everyone is crushing in on me. Maybe that is part of the seizure thing or maybe it is part of the medication. All I know is that I keep trying to live a productive life. Little accomplishments are enough for me.

not that im glad that all of you feel this way , but i am happy that everyone can relate. i have been lucky enough to only have had grandmals in front of my husband and mother, but like you i usually know when the petits are coming so ill run out of the room, but one time we were playing cards in my basement with my friends and felt it so tried hence the word tried to run upstairs to only run out of time and fall and sieze. my friends wanted to know why i felt the need to leave the room and when i told them of my embarresement they said wouldnt you have been less embarressed if you just sat here and stared, we just kind of joked about it and since we talked its better, but i would be lying to you if i said i dont try to hide it anymore. good luck

I always say (I am sorry) when i wake up and realize what has happened. I have scared little kids befor so i just always say im sorry. My whole lif someone was cruel to me at almost every one iv ever had. then it bugged me when i was a kid now i just dont care what the evil people think of me. but i still hate to scare a child. Dont worry about how you feel when you wake up,everyone of us react different.

im mortified. enough said