Epilsey - Epilepsy Message Board

Layne41 · 05-27-2002, 08:25 AM

Hi! My name is Kerie I was dignos with Epilsey at the age of 5 I am now 41. Back in 1994 i was put in the hospital for 3 weeks cause of seziure not being control.I went from taking 1 Dilitian and a 1/2 of mysoline a day. Now I take 4 Dilitian and 5 Depokote. This has really changed my life, for some reason they can't get me control they told me when i was in the hospital that i had Thyroid problems and that effects my Dilitian. So when that effects the Dilitian, it knocks my level down well we all no what that does (Sezuire). I had only 1 type and that was the Grand mal and now i have the simple partial. I have about 6 to 7 seziure a day i don't go out all the way but its like my leg jumps from one side to another.hear back

I would like to know if there is any one that has lost of memory cause of seziure?

Layne

Kimba523 · 05-29-2002, 04:49 PM

I have simple partial/complex partial seizures. Although I don't suffer from as many seizures, I can't seem to keep a control over them. I lose my memory frequently. Whether it's just a day's worth of when I had my seizure or I can no longer remember a joyful day from a few years back that I so wish I could...it's random memory loss and I adjusted to it.

Kimba

Angiemomma · 06-01-2002, 05:28 AM

Hi, My 15 year old daughter had her first seizure three months ago. She had an MRI, blood work and an EEG. They concluded simple partial seizure. The neurologist started her on trileptal. After 3 wks he increased dosage as she had another seizure. The seizures were getting worse. Went to the mall and she kept falling, dropping her pocketbook etc. The neurologist diagnosed her with myoclonic epilepsy. Changed her meds to depakote and we've been gradually increasing each month. She is very embarrassed. This week she had a grand mal in the hall at school. When she opened her eyes all these kids were staring and they sent her by ambulance to the hospital. She has no memory of what happened. Just remembers being at her locker. My problem is this. We are anxious to find meds that are going to work. She doesn't want anyone to know of her diagosis. She's telling the kids in school she fainted and blacked out. Is there a such a thing as being in denial? I'm trying to stress to her how impportant it is to talk to other children with epilepsy. Maybe she thinks her friends won't understand...I don't know but alot of the kids that witnessed that seizure know she may have epilepsy. Has anyone out there been afraid to tell their friends or family fear of embarassment? I think I will give her some time to be comfortable with this new news.Thanks for listening . Ang

Beth's Mom · 06-01-2002, 08:33 AM

Angie's Momma,
I do not wish to scare you, but I had a student last year whose parents are still dealing with the guilt over her being misdiagnosed and losing her. Lauren was a cheerleader, on my yearbook staff, and very popular...I loved her very much. They said she had epilepsy, which is seizures of unknown origin to me. The kids were so accepting...she and her parents and our whole staff were very upfront with the whole thing. Kids have so many different things going on with them healthwise...tell your daughter they will treat her with compassion. They had Lauren on meds but were unable to predict when they would happen. It turned out her seizures were connected to a heart problem that had not been adressed...which may be another direction for you to go. My advice (I am a junior high teacher) is that kids need to learn what seizures are and she will find how many true friends she has if she just tells them...they want to know and will be of help to her. Kids can be cruel but I don't believe her true friends will be. Somehow, when it is a serious thing you are dealing with, kids know to back off from the negative.
I wish you luck. God bless.
Marilyn, Beth's Mom

Kimba523 · 06-04-2002, 01:03 AM

Angie's momma,

When I was in high school and having seizures, I did the 2 absolute necessary things in my eyes. First, I had information packets made to give the staff decribing epilepsy in detail(description of different types, how to act/treat me during/afterwards, when it is/is NOT necessary to call 911, etc.). Secondly, I insisted (for my social and health's sake) that a close friend be put in each of my classes. That way, if I had an episode, there was always someone there for ME. My close friends VERY QUICKLY picked up on the signs and were, more often than not, able to get me to a safer and less crowded area which lessened the embarrassment of cruel peers. As for the cruel peers, I do admit I handled them myself in a negative manner and was reprimanded for doing so. However, considering the reasons for my negative actions...the dicipline was always light. Surely, you don't wish your daughter to wreak havoc at school but, it has already happened purely unintentionally. Bottled-up stress and pent-up anger will lead to a major blow-out that will cause more talk in school than a seizure. My peers learned very quickly how much they took for granted and left me be. Good Luck!

Kimba