hi everybody

[januarytree]

hi everyone. i stumbled across this forum and i felt that it might be a good place to share information or just vent.

i'm currently just shy of 30 and have been having generalized tonic-clonic seizures on and off for 9 years. for about 4 years in the middle of that, i was seizure-free on dilantin, but they came back. since then i've tried a number of different medications with limited to no success. i'm going to be evaluated for surgery later this year. this is really unfortunate, and doubly frustrating for me because i love cars and the ultimate stress reliever for me is driving--and i can't do what i love.

in the past i was very guarded about my condition and didn't want anyone to know--i was afraid they'd think i was "brittle" and treat me differently, especially at work. after having a seizure in the office i had to open up a bit more, and i've been pleasantly surprised with how supportive most people have been. slowly i've come around to the idea of talking about it and i think this forum might be a good opportunity, especially with people from all over the world who are going through the same thing as i am.

so, hi everybody. i look forward to reading more about what all of you have been experiencing and what you've done to preserve your sanity.

warmest regards,

alex

 

[2ndchances]

Welcome to CWE Alex, sorry for the reasons that have brought you here though. You'll find a lot of great people in here, who all 'get it'.

I had my second surgery (also in Ontario!!) on Apr 29th, so I look forward to get back to driving, which I also miss! I wish you well on your journey... keep us posted on how you're doing! Take care.

 

[valeriedl]

This website is wonderful. I've gotten so much help and info on here that I don't think I'd know what I'd do if I hadn't found it. People do understand what you are going through with your seizures. You don't have to try like crazy to explain things that are happening like you do with people who don't have epilepsy. Vent all you want on here too, I think almost everyone else does - lol.

You don't need to be embarrassed about having epilepsy. I don't start a conversation with someone by saying "Hi I'm Valerie and I have epilepsy, how are you doing today?" But if something comes up in the conversation, like why I don't drive or work, I'm not afraid to tell them.

Most people don't know enough about epilepsy to understand what it is. Sometimes they think that you are going to have seizures every five minutes. They don't know that you can go days, months or years without having a seizure. The people at work might understand that it's like that because they didn't see you having seizures all the time and that's why they are being like they are.

Meds are hard to deal with, I know. I've been on so many and the longest I think I've gone with out having a seizure was maybe 2 weeks. Which for me is pretty good. I'm not able to have surgery so we just have to keep messing around with the meds to see if we can get it better. I hope that if you do have surgery it works out good.

It's nice to meet you!