Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
Does anyone else get embarrassed (hmm just noticed the bare ass in that word) when they have seizures in public? It bothers the hell out of me. I know it shouldn't but it does. I have the peti-mal ones that are mostly like going into a trance. But if I am in the middle of a conversation; and don't answer some people just treat me like I'm dumb. I hate that.
Today I had one and felt it coming on. The lady I was talking to was a CNA and understood when I put my hand on her shoulder and just seem to stare off into space. I apologized afterward and she graciously said that's what she was trained for. I don't have the ones where my body stiffens up often. But they are not quite as severe as grand-mal seizures.
One of the things my doctor told my husband was to pay attention to what my face does during or before a seizure.
Everyone I asked said that before the trance seizures my face went very pale. I think that's because I feel them coming and they are scary. When I have the seizures where just my arm jerks people say I turn real red in the face. That's because I am so embarrassed. When my whole body does it, I don't know; those usually happen while I'm asleep.
But I am embarrassed by these things. Is anyone else?
Today I had one and felt it coming on. The lady I was talking to was a CNA and understood when I put my hand on her shoulder and just seem to stare off into space. I apologized afterward and she graciously said that's what she was trained for. I don't have the ones where my body stiffens up often. But they are not quite as severe as grand-mal seizures.
One of the things my doctor told my husband was to pay attention to what my face does during or before a seizure.
Everyone I asked said that before the trance seizures my face went very pale. I think that's because I feel them coming and they are scary. When I have the seizures where just my arm jerks people say I turn real red in the face. That's because I am so embarrassed. When my whole body does it, I don't know; those usually happen while I'm asleep.
But I am embarrassed by these things. Is anyone else?
My daughter tries to deal with the fact she has had most of her seizures in school, but her not wanting to go to school some mornings tells me she is really bothered by it. Sometimes she will come out and say. She has had a lot of panic attacks and anxiety too. No person wants to be vulnerable in front of others. It takes down our defenses. It makes someone feel like they could have done something odd or looked funny to other people. The thing is, anyone with common sense and decency would understand and not think a thing. When my daughter has seizures, she looks like she is sleeping, other than the noises she makes and shaking. I have told her it does not look odd or embarrassing. My daughter gets so scared when she feels dizzy because she thinks one will come on. She has yet to find a real sign of a seizure coming on and i think that is why she is so worried.
I put this post up back in August. It seems like years ago. For your daughter, I have recently bought a book called, COGNITIVE BEHAVIOURAL THERAPY. It is helping me understand that the world is not going to end 'just because I had a seizure'. I have been having my seizures for thirty-five years. It does get better. Most of the time I know when a seizure is coming on. But not always. Watch her closely. See if her face changes color or her breathing changes. When I am about to have a 'staring' seizure, everyone says I go really pale. When I have one that includes body jerking, my face turns really red.
Just some thoughts. I hope this helps.
Love and Hugs
Jenn
COGNITIVE BEHAVIOURAL THERAPY FOR DUMMIES. Yeah figured even I could understand that. lol I hope it helps.
Love and Hugs
Jenn
I have never personally felt embarrassed (yes, I guess about losing bladder control), but I HAVE felt very sad and very disappointed in people who I thought were friends. I had a seizure one month, and about a month later, my "friends" were all going camping. I really didn't feel well... I wasn't adjusted yet to my medication and I didn't feel "normal" and they kept pressuring me to go. "Oh... you're ok... there's nothing wrong with you... you'll be fine... you HAVE to go camping with us!" ... "But, I don't feel well... I can't go... I'm not ready yet."
It had NOTHING to do with embarrassment, but with truly not feeling well enough to go camping. SO... THEY WON... I went camping... hahaha!!!
Well... it serves them right!!! I not only had one grand mal seizure in the middle of the MOJAVE DESERT with NO MEDICAL FACILITY for HOURS away... I had TWO grand mal seizures!!! lol!!! I think it is HILARIOUS because they deserved it!!!
Anyway... back to being "very sad and very disappointed"... there were 5 friends of mine on that camping trip and I literally NEVER saw or heard from 3 of them again because they were so FREAKED OUT by my seizures! I've told this story here before and people say that they really weren't my friends in the first place if they could abandon me like that, but, regardless, it is still disappointing. Perhaps they felt bad that they FORCED me to go??? I don't know.
So... My advice after 20+ years of having seizures... TELL YOUR FRIENDS AND FAMILY that you have seizures. Explain to them, upfront, what to expect and how "bad" they might appear to be. Teach them what to do if you start to have one. Tell them about timing the seizure and if/when to call an ambulance if needed. (My doctor says that they only need to call an ambulance for me if my seizures last longer than 5 minutes. Ask your doctor what to do in your case). I also explain (and I think this is the most important thing they need to know) that when I'm having a grand mal seizure, that I don't even know I'm alive. I'm NOT in any pain, and I'm not aware in ANY way that I'm having a problem so THEY DON'T NEED TO WORRY if I'm in any pain or in agony etc. I think by reassuring them about this, it helps them to relax and know that there is nothing they can do but be patient, make sure I don't hit my head if they can, and just wait for it to pass.
I don't tell every person I meet every single day, but if I meet a new person that I know I will be spending regular time with (like a co-worker or a new friend etc), I make a point to let them know that something might happen some day. If we're worried about the seizures, our caregivers will be worried about them, so as hard as it may be, we really need to accept that seizures are part of our lives and that it will be ok. Our confidence will help them be confident when we need them the most!
They DON'T always understand... they forget that I have seizures and I hate to have to bring it up to them as often as I do, but I think its important to communicate and stand firm for ourselves. Only we know how we're feeling.
So many people assume that talking about my seiz. would be insulting or offensive to me, but actually it isn't, in fact I even make fun of myself and what I must look or act like when having one.
My friends/family and I can laugh together about it also. It's doing things like that that makes for good therapy for me.
any suggestions
Love and Hugs
Jenn
If people question you, you just got to let them know the deal, or not, but don't close yourself in.