My epilepsy

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

benosa

New
Messages
3
Reaction score
0
Points
0
I was diagnosed with epilepsy when I was 7 after my teacher noticed that I was drifting off alot! The doctors expected me to grow out of the problem. I had my 13th birthday yesterday and I still have epilepsy! Now I probably won't grow out of it as the doctors are starting to call my seizures Juvenile Absence Epilpesy instead of Childhood. It's annoying cos I don't want children in my school to know but people are starting to pick up on the fact that I'm missing bits of lessons. I now have been referred for a sleep deprived EEG in 2 weeks. I haven't been taking any medication since Christmas Day and my doctor wants to wait until after the EEG before starting me on new meds (lamotrigine). I understand that they want to get an honest reading but I want to feel normal and for the teasing to stop!:banana:
 
Happy Birthday benosa...I'm sorry you are going through this

I myself have had epilepsy my whole life and I've still not fully accepted it. I know how you feel about the teasing...It hurts but remember that there are people out there who care (a lot of them on this forum)
 
Hi, Benosa.

Welcome to the forum!

First of all, Happy Birthday!!!
:wave:

Sorry about your absence seizures. Epilepsy is a hard thing to deal with, especially when trying to deal with people you go to school with.

There are a fair number of teenagers in here. Check out this thread:
http://www.coping-with-epilepsy.com/forums/f33/teenagers-7533/

There's also a room, The Loft, that is especially for teens/young people to hang out, but please do hang out in every room:

http://www.coping-with-epilepsy.com/forums/f33/
 
Hi Benosa!
Welcome and Happy Birthday!

I know the seizures must be frustrating, but it sounds like you are hanging in there. Come here and vent if if you need to -- we're good at listening.

By the way, I don't know if this is an option for you and your family, but neurofeedback has had some success in treating absence seizures. It's basically like training your brain to behave, using a video game format. You can read more about it here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/
and feel free to ask any questions about it.

Best,
Nakamova
 
hi benosa happy birthday! my name is olivia and i'm 16. i had my first seizure in september. it was also in front of an entire gym class of 84 people. i totally understand how you feel. i know it may be hard, but telling people what is going on may help them understand. i have a lot of random jerks in my upper body and it looks really weird sometimes. it even happened during a presentation when i not only had jerks but i had an absence seizure. i was so embarrassed but when i explained it, the other kids understood. i was o nervous when i spoke to them about it too, but the only reason they think it is weird is because they don't understand. people who don't know about epilepsy think the only seizure that is a seizure is a tonic clonic or grand mal. that's why it's hard to explain the others. but they need to know in order to understand.

private message me if you wanna talk any time. it helps when you know someone close to your own age and i think i might be the closest one on here lol.

olivia
 
Happy birthday!

I'm sorry about the problems you're having. Do they know that you have epilepsy? I find that often times when I explain it people are kind and understanding. (But I also didn't start having issues till 15, and maybe it's an age thing?)

If you talk with the teacher the teacher might be able to help out by doing a short lecture on epilepsy or something.
 
Back
Top Bottom