Hello Everyone, My Story

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!

buds5101

New
Messages
1
Reaction score
0
Points
0
Hello, my name is Charlie and I was finally diagnosed with epilepsy last fall. I had a severe head injury when I was 18 and I am 42 now. I was in a coma for 50 days. After I woke up, those stange feelings began, I was sill in the hospital. Those feelings were felt like a chill, bad taste in mouth, and my parents noticed a blank stare in my face.

These feelings increased in frequency over time. Sometimes, I could have anywhere from 50 to 100 a day, and other days none. It was 4 years before I had either 1 or 2 gran mals during night. Afterward, those little spells as I called them then, were called petite mal seizures.

While the medicine I was put on slowed the small seizures down, they never stopped completely. You can imagine though, going from having 50 to 100 a day to a couple every month or two, makes you feel like you have control.

Many accidents and jobs later, I applied for and received disability. I also move back in with parents, at least for a while. A new neurologist for the diagnosis and adding Keppra have decreased the small seizures more, but they have not stopped yet. While I love and appreciate my parents for taking me back in, I just want to feel normal again.

Drive, work, go to the store, and make relationships. It seems like most of this has been taken away. Okay, I'm done, but thank you.

Charlie Ross
 
Hi Charlie, and welcome to the site.

I think you've hit the nail on the head for many folks here: "Drive, work, go to the store, and make relationships." The normal stuff that E has made difficult to impossible...

I hope you get a chance to explore the site. There are many different forums for venting, chatting and asking questions, as well as interesting threads about alternative/complementary treatments involving diet and neurofeedback.

Best,
Nakamova
 
Hi Charlie, welcome to the forum. :hello:

You might investigate EEG neurofeedback. It can help retrain the brain to work around traumatic brain injuries (TBIs).
 
Hi, and

welcome to CWE, Charlie!

Bernard brought up a good point. Here's a really good thread to check out...It's the experience of one of the moderators here, with her daughter and neurofeedback...

Neurofeedback--Rebecca's Story

I'm sure you're going to like it here. There are plenty of cool people, lots of information, and lots of nooks and crannies to check out. Have a great time checking everything out......Mr B has built us an AWESOME house here!

Take care!

Meetz
:rock:
 
Back
Top Bottom