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ElegantEpileptic

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Hi everyone, I'm new to the forum and would love to start chatting/corresponding with other similar sufferers. I've had epilepsy all of my adult life and until fairly recently have been 100% controlled with Epilim. Problem is, we've had loads of stress in our home life with my mum being ill and my little boy also having very serious seizures/autism (probably a result of my AEDs) and this has started my seizures off again. The doc has increased my meds a couple of times but I had another very bad TC seizure last week and unfortunately this time at work so am feeling very down. My colleague said I was very dignified so that made me feel better and I don't feel quite so humiliated. It has made me realise that the 20 or so years I have had seizure free meant a) I was really flippin' lucky! and b) I was probably a bit in denial about my condition. The recent episodes have brought it home to me and reading some of your other posts in this forum have helped me accept things a bit better. Please let me know what you all think and I hope to chat to some of you soon. Liz x
 
ElegantEpileptic

You want to know what I think, well first welcome to CWE, you are more than welcome to chat and ask questions. We are all in denial at some stage so sorry to say this but welcome to the world of epilepsy, you are not on your own.
 
ElegantEpileptic

Its never easy no matter when you start with it, but remember you are here now and we will try to help even a little.
 
Hi Liz, welcome to CWE!


It's never fun to have seizure, and the rest of epilepsy's baggage can be hard to deal with too. Feel free to offload it here -- you're in great company, and CWE members are awesome at offering support and advice.

It sounds like you have a lot on your plate right now. Don't forget to build in breaks for yourself so the stress doesn't build-up. Even 5 minutes a day can make a difference.

I hope things a take a turn for the better, and that you can get your seizures and your son's under control soon.

Best,
Nakamova
 
Hi Liz. One thing you will find here is that none of us will freak out or feel weird if you talk about your seizures. When you're the only person around with epilepsy you tend to feel sort of isolated and have a hard time talking to others because they are uncomfortable. While we all take our epilepsy seriously, most of us do not have it as the center of our lives. If you read some of the threads here you will find that there are LOTS of other things we talk about. And joke about!

In my case I was diagnosed and started on meds about 30 years ago. In that time I have only had four or five grand mal (tonic-clonic) seizures but have probably had, literally, at least 10,000 partial szs. Who knows, it may be time for you to try out another med. I did Dilantin for about fifteen years, then Lamictal for a long time, some short trials of a couple of others, and now Lamictal and Trileptal together seem to be keeping things mostly under control with minimal side-effects.

I was interested that your colleague said you were dignified during your seizure. I think he was just being nice, don't you? They have probably posted a video of you on youTube by now! :) (I'm mostly kidding about that! Really! I tend to not be the most serious person here, but I figure you have to laugh at stuff, right?) As far as I can tell we look anything but dignified when we're havin' a big one. Even my partials make me look spacey and like I'm chewing on something. Not dignified!

Anyhow, I know that the more comfortable we are with our condition the more comfortable others will be and the less effect it will have on our lives. Keep in contact with us here, and . . .

Carry On!
 
welcome to CWE,

I remember when I was 1st. diagn. I felted I was the only one alive with E. and felt that when. anyone looked at me-they would know there is the lady with E.

Have learned just how many people have E. Knowing this helped me.

You are among people who understand.
 
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