h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Don't know if you are still hanging around these parts AngryPanda, if its any consolation to you, I feel the same way.
I used to be a cocky, happy carefree kinda chap, then when I was 16 I got diagnosed with epilepsy, since then it's been pretty s**tty much of the time.
Well, if you do ever read this, get in touch and keep your chin up eh.
GWL

Diagnosed with nocturnal Epilepsy at 14 (I think). Quickly controlled with Epilim. After years of clearance (now 30), advised to come off. One month on no medication, and they're back. Surprised last night with the jerks - even though I'm back on medication since the Grand Mal some weeks back. All really getting me down, as I was hoping this was an end to it all.

Can't help feeling my only prejudice issues are with me. Boyfriend, family, boss all fabulous. It was okay being scared to go to bed as a teenager, but at 30 I feel a bit daft. And don't want to get into the habit of using sleeping pills. Anyone got any advice on stopping that panicy feeling when waking up in the middle of the night?

I'm sorry to hear that ELG. My heart goes out to you.

Mine doesn't seem to happen during the night - so I'm afraid I can't offer any advice on getting to sleep. I have enough trouble doing that anyway. I've just gone about 18 months without a seizure, and I already want to start to get off the Epilim. Can't see it happening anytime soon though.

Hopefully one day I can live a lifestyle that doesn't require me to sit in front of a computer or get up too early in the morning (the two things that seem to trigger mine off). Until then, I guess I should just accept it and keep popping the pills.

As my heart to you - but mostly because you're stopping smoking. It does get easier. Before long you'll get back from the pub and realise you didn't even think about wanting one (it took me about two months to get there). A few days after I quit, I had my Grand Mal. If THAT doesn't get me starting again, nothing will. If that thought keeps me off the fags, the fit would have been worth it. I really feel that.

My fits are early morning too generally (with a couple of excpetions - but always associated with sleeping). I sit in front of a screen a lot, and thankfully this doesn't set me off. Stupid question, but have you tried plasma screens? Their technology is totally different and not realiant on flicker.

I don't have any problems with taking pills regularly. My mother pumped me full of vitamins as a child. But I do get paranoid that the Epilim will make me fat. I have long stopped caring that it makes me forgetful. And the hairloss? Well, I don't think I can blame that one on Epilim. I'll point my finger at my Dad for that. But I can't get anyone to tell me what is a 'normal' dose. I'm currently on 400mg am / 400mg pm and am hoping this is enough (I used to be on 400/600). But I can't find a definitive dose listing anywhere! What's your experience with Epilim?

Well, I know it makes me a bit chubbier. After I increased my dose from 1000mg a day last year, I suddenly grew out of half my trousers and had loads of people start taking the piss out of my weight.

I'm now on 900mg am and 900mg pm, but I feel this is quite a lot and would really like to reduce this. Hopefully I'll be able to do this after I come back from travelling the world.

You're right about the flat screens though. After my last seizure, I asked work for one, as they had two in the whole office, and they were nice enough to let me have one of them.

The pills thing really gets to me. One day I am determined to live without them. As they say, all drugs have side effects and these are no different. I just want to find out what I'm like without having my physical and mental world altered by these drugs.

Stay well. And thanks for the support with the smoking

I didn't really notice any difference in myself when I was off the Epilim. I thought the memory would improve, or something, but I can't say I noticed a thing. I guess it's important not to demonise having to take the pills twice a day. It's not a bind to clean our teeth twice a day - and that takes far more effort!

It's not the effort that gets me. It's more the nagging in the back of my mind about it. The fact that it is something I have to take into account whatever I do. Maybe, I should just accept it and get on with life. But I'm not a fan of stability, I like to be a bit spontaneous, and having to remember to take medicine twice a day can be a real pain sometimes.
That's good to hear though that it doesn't have so much of an effect that you notice when you stop taking it. I think it's probably more of a psychological thing as much as anything else

Just wanted to say thanks to GWL and to h2g2 for being a place to talk a few months back - it was (and is) much appreciated.

Still on the Epilim, but it's no more annoying than having to make sure I have a toothbrush with me if I'm to spend the night away from home! Or having my wallet, if I'm off to the pub...

D