Hi everyone. My son was diagnosed when he was three, having tonic clonic seizures. Was reasonably well controlled on Tegretol (by reasonably I mean maybe one seizure every three or four months), and our Dr would adjust his dose. He has always been a very fit, active and happy-go-lucky kid - then in Feb of this year he started having a lot more, and the Doc was unhappy about that (we all were),so he was changed to Epilim.

First of all he started having palpitations and felt weak, was on the edge of a seizure all of the time, so up went the dose. ECG came back AOK. Things settled down for about 6-8 weeks, and in the last week he has had four seizures, which are different to the ones he had before - much longer in duration, and lots of leg activity - prior to that, he only ever had an arm twitch; plus he has been complaining of headaches and has started bedwetting almost every night for the last week. Saw the doc yesterday who said he is already on a high dose of epilim, and we should wait for an eeg. He had a mild seizure again today.

My question (s) - Can I blame the bedwetting on the epilim, or should I consider night seizures?

Would headaches be anything to worry about with regard to his epilepsy, or the epilim?

Should I be worried that the seizures he's been having for six years are now markedly different? Or do they change over time?

Has anyone else found that epilim just doesn't agree with them?

And finally, does anyone have a magic wand I can borrow?

I feel sad for my son - he's getting embarrassed by it now, and no longer really trusts his otherwise perfect little body.

"..he has been complaining of headaches.." Can he elaborate at all if they are "just a headache" or the location of the headache, if light makes it worse (or not) if sound has any effects when the headache exists. If going to a dark room helps... you get what information you are trying to pull out.

You may understand what my questioning above means; or if it is just the sideFX of the medication. Try to ask it so he understands.

One of the best bits of advice if you suspect night seizures is throw up a night camera (video) on extended and see if it is captured depending on the frequency of a persons seizures. If they show physical movements in their seizures this may show up on the video, or if they make audible remarks (even grunts) in the seizure the mic should pick it up.

Sadly epilim (what we call Depakote in the US) tremor and headache are **rare** sideFX that ARE documented. CAUTION this does not mean the medication is causing it in his case. Just be aware of this.
I didn't have issues with the drug itself, they had me as an adult on a high dose. I'd suggest checking blood levels and seeing where they sit on the "range" before jumping to any conclusions.

Don't we wish (smile) that there was a magic wand. Having been on meds since I was a very young kid back in 81 I understand the feeling personally.

Looking at MY medication history the NeXT possibility may be more than one drug to try and control the seizures. My history I was first started out on two from the gate. That worked great for a very long time with small adjustments here and there. A lot of the time two drugs (sometimes more) are needed to control seizures. I've been on as many as four. Three was my usual amount in the last decade.

Be educated on the medication/s they want to use so you are one step ahead of the curve.

--Travis

I was diagnosied at the age of 13 and there was a lot of changing meds at that stage because of puberty ect.

On epilum alone I found that I often felt woozy, had trouble sleeping and my seizures weren't really under control very well.

The doctor perscribed me Lamactil to take alongside the Epilum and that fixed all the problems that I was having with it.

I'm not suggesting that this may be the best thing for your son but maybe if you suggest this to your doctor to get his feedback on possibly counteracting the effects of the Epilum with another med.

Hi there,
I've been epileptic for a total of 44 years and tried various drugs during that time, one of them being Epilim.What I found with this drug was that my brain was speeding at about a thousand miles an hour and I could not control it.I thought I was going absolutely crazy.But every drug is different for each person.Unfortunately you have to try quite a few before you find which one or which combination is best for you.I've been on a combination of Lamictal and Tegretol now for the past 4 months and now I'm worse than ever so once again I have to try an alternative.You've got to be strong and support your son as much as you can and show him all the love you can because he might grow up to be a very pissed off man.Give him hope and strength to you.