Hi - I'm New Here!

[whittyg]

Well, I'm new to this whole forum thing and a little nervous I guess... but I suppose I'll start by introducing myself. I'm 28, and live in Toronto with my husband and my dog. I've had epilepsy for ten years - simple partial seizures every day (currently one or two) and sometimes when I'm super stressed a tonic clonic happens, but not very often. I take 200mg of Topomax twice a day.
I really just want to be able to meet some new people - I don't know anyone with epilepsy - and talk about it and I guess I could really use some support. I've got a lot to give as well! Like I said though, I'm new at all this, so I'm probably not going about it the right way - but I'll learn! I'm really looking forward to joining the community.

 

[Bernard]

Hi whittg, welcome to the forum. :hello:

No worries! Forums can seem a bit wierd when you first start using them to communicate with people, but in the end, it's not much different than playing "phone tag" by leaving messages on answering machines (just that the messages are public like a group conversation).

 

[whittyg]

Thanks for the friendly welcome Bernard. I think I'm already beginning to find my feet in here!

 

[Paul's Mom]

Hi! My son also has partial simple seizures. He is twelve and has a difficult time describing them. Would you mind describing what you experience when you have a seizure?

 

[whittyg]

Hi Paul's Mom!

I'll give it a try - but they are really hard to explain so bear with me...

To start with, my Epilepsy is focale epilepsy, which starts in a part of my brain which deals with my vision. So, your son's simple partials may be completely different to mine depending on his type of epilepsy and where it's manifesting in his brain.

OK, here we go. When I have a simple partial I stay conscious but I can't really see anything properly (like I'm watching everything on a TV screen). I feel completely unattached from my body and I have no depth perception. So, if I'm walking I can't continue, if I'm talking to someone I'll understand what's going on and be able to continue to train the of thought but just.

I'm told that my pupils dilate really huge - the size of my entire iris. And people of who know me know when I'm having one (although I think I hide them pretty well by now) and say I just seem a little lost, vacant and not really myself. I usually rub my feet and hands together when I'm having them - it's a strange comfort tactic until it passes. They last 10-30 seconds and I have them daily, but I'm working on it. My goal is zero. Wish me luck!

How old is your son? How long has he been having SPs? Does any of this sound familiar? I hope this helps a little.

Best wishes.

 

[Paul's Mom]

Paul is 12. He is was diagnosed when he was 7 but we think it went back as when he was 4. His seizures are located in the frontal and temporal lobes. He has seen things, heard things and had strange emotions. The best way I can describe his seizures is that it looks like he is drunk. He gets very emotional and sometimes violent if confronted when he is going through one. My husband says it is like trying to take the keys from the drunk guy at a party when he is trying to drive home. He still does not know how to control himself when it happens. I hope that will come with age. I would love to hear any suggestions about how to teach him to handle himself during one.

What all have you tried to control yours? We have found the VNS very helpful but I know others have not.

Thank you for the information. It really helps.

Paul's Mom.....aka, Alysia