sorry about not knowing how to call it, thats how i tell my husband that I am feeling trouble coming. most of the time its ok, we just know to rest my body- lie down. but what about when u are out in public???? u feel guilty because yet again your the cause of a fun event ending early, so u try to talk yourself out of it, - 'oh i feel just fine," but that really doesnt work, because its not in your mind. - my main fear is I am going to have a grand mal- because those are my types of main seizures and I am going to HURT myself. it gives me anxiety to see that hard concrete, .

to by the time i tell peter, dont feel good, which he already knows, he just waits for me to admit it to myself- i feel like he is literaly dragging me to the van, ????? have u had that- if u didnt actually have a seizure- or did i- but not grand mal??? but to have your body go so weak , or is it because i have chronic fatigue syndrom???

Hi Robin,

I don't have answer, only the fact that you remain in my prayers and hope you're feeling well soon.

((((hugs))))

Lisa

Robin,

I have a tendancie to "fight off" seizures when I'm out in public, until I can get somewhere I can be alone. Unfortunately, I only think I'm pulling it off.

I was in the grocery yesterday. I got that odd burning smell, heard my brain clicking and had the horrible funny feeling. I knew one was coming. Then I get to the check out to pay for what I have and the ice box is going hum,hum,hum. Arghhh! So I finish paying for my stuff and tell my oldest to go ahead and buy his magazine, and I'll start loading the groceries into the car.

He comes out to the car and says "the clerk asked if you were going to be okay, I said 'yeah, my mom just has epilepsy, she'll be fine.'"

I looked at him and said "He could tell?"

My son rolled his eyes (he's 13) and got in the car.

So I finished my little episode in the car and after I felt better, we headed for home.

My point, I guess is that we only fool ourselves. Just admit that you need help right away, those who love you understand.

Hi,
I tried to respond to you last night, but couldn't send it. I thought maybe I had been banned....couldn't figure out why, but I guess maybe there was something wrong with the server.

Anyway, I totally hear what you were saying. I am always afraid when I'm out in the public too. The sad thing is that people have heart attacks, asthma attacks, go into diabetic comas, etc., etc. These situations certainly don't seem to cause the fear, hysteria or social stigma that epilepsy causes. I realize that seizures are frightening to witness, but most of us come out of them within a few minutes. In the case of heart and asthma attacks most people know how to help the victim. They can recognize signs and symptoms, and there are illustrations on how to perform mouth-to-mouth breathing and CPR all over the place. I am totally convinced that we each need to take every opportunity we have to educate the public about OUR disease.

O.K., back to you Robinrobin, my husband acts almost exactly like yours...he waits for me to admit I am about to have a seizure, then directs me to a safe place. It's a good thing we have a warning period! How long is your aura? Mine is a few minutes, although I "Lose my right side" almost immediately, so I walk like a drunk. I take Lorazepam (I carry it in a vial around my neck) as soon as I feel a seizure coming on. It helps keep me from going into a grand mal. I'm hoping my most recent medication change will help me to be relatively seizure-free. I can dream can't I? Oh well, have a nice day. Kathy

thank you everybody. thank you kathy. yesterday i said, i have to sit down, and i just found a spot and the lady told peter- oh i just thought she was just saying she needed to sit down- is she ok? peter said- oh she has just has epilepsy so she is listening to her body, and the lady was nice and said ' i hope she feels better'. I guess i didnt relize that kathy- yes i too act like i am drunk when i am walking with my auros. i try to be so patient, just a little bit more robin, i have to talk myself into just waiting. - trying to get to 'safety' - which i consider somewhere more private if my body needs to go into a grandmal. I really feel like sometimes its me and my body fighting. my 5 year old girls are so patient, and try to help me walk, they are loving and dont have a fit if we have to leave early. i wish i could have my neurologist and doctors understand just how much we put up with this. good luck with your meds kathy, my increase helped alot.