[MelissaCH]

I'm new to posting stuff on forums so I hope I'm doing this correctly. I guess my story probably isn't too different from anyone elses. I've had temporal lobe lobe seizures my entire life but wasn't properly diagnosed until I was well into my 30's. I spent most of my life trying to find out what was wrong with me, why I was so messed up, different. I thought I would be relieved when I was finally diagnosed but I've been more isolated and miserabled. People fear epilepsy worse than if I told them I had the plague! I had to give driving, finally working and am now on disability. No one understand the type of seizures I have. They assume it isn't 'real' epilepsy or I can just stop it since I don't fall down and shake. Sorry..there's more I'd like to share but this is very depressing.

[Kitt]

Welcome MelissaCH.

[Hockey]

Hi and welcome, Melissa.

You're right about the public ignorance. After an MVA, I started to suffer from absence seizures. I'd emerge from them, frightened and confused, only to have people angry with me for "day dreaming" and "ignoring" them. There's a fun situation.

I hope it will help you, as it has helped me, to be able to come here and communicate with people who understand.

[eva5667faliure]

[QUOTE=MelissaCH;1069127]I'm new to posting stuff on forums so I hope I'm doing this correctly. I guess my story probably isn't too different from anyone elses. I've had temporal lobe lobe seizures my entire life but wasn't properly diagnosed until I was well into my 30's. I spent most of my life trying to find out what was wrong with me, why I was so messed up, different. I thought I would be relieved when I was finally diagnosed but I've been more isolated and miserabled. People fear epilepsy worse than if I told them I had the plague! I had to give driving, finally working and am now on disability. No one understand the type of seizures I have. They assume it isn't 'real' epilepsy or I can just stop it since I don't fall down and shake. Sorry..there's more I'd like to share but this is very depressing.[/QUOTE
Dear friend
Just google
"Epilepsy Saraeve"
That's my daughter

[Darlene]

Melissa,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place. I see you have found the PT forum which is the forum where you will assistances with your questions.

I see you have found the forum on Epilepsy. I myself have had epilepsy since I was 10, which that is ages ago. I was able to have surgery in 2009 and now I am under controlled. Youe will find some great assistance in the Eplepsy forum.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[eva5667faliure]

Originally Posted by MelissaCH

I'm new to posting stuff on forums so I hope I'm doing this correctly. I guess my story probably isn't too different from anyone elses. I've had temporal lobe lobe seizures my entire life but wasn't properly diagnosed until I was well into my 30's. I spent most of my life trying to find out what was wrong with me, why I was so messed up, different. I thought I would be relieved when I was finally diagnosed but I've been more isolated and miserabled. People fear epilepsy worse than if I told them I had the plague! I had to give driving, finally working and am now on disability. No one understand the type of seizures I have. They assume it isn't 'real' epilepsy or I can just stop it since I don't fall down and shake. Sorry..there's more I'd like to share but this is very depressing.

melissa, this is my daughter's website. she was also diagnosed as an adult. you can also find her on facebook. i hope this helps you feel a little more solidarity-- she is a purple warrior and has turned this disease into a chance to be an advocate.

http://saraeve41.wix.com/saraevepoet