Mum's epilepsy

[daisycake]

I've never been particularly worried about this before but am now terrified. Bit of background info - my mum's been taking seizures since 89 after forced ECT, hasn't seen a neuro since then but has recently, after demanding it, been re reffered. She hasn't seen anyone as yet but her appointment's in the next 12 weeks at some point. She asked me to write a description of her fits and so I did. Thing is, I also googled - and discovered this horrible thing called Sudden Death in epilepsy. They said this occurs in individuals with poorly controlled and untreated seizures - like my mum's. I'm so frightened - I dont want anything to happen to my mum and I'm now unsure what to do. I don't know if any if you will know much about this but please if you do can you give me some advice? x

[daisycake]

Although they've never actually proven that it is epilepsy so maybe I shouldn't be so worried?

[countrygirl]

Deaths due to epilepsy are often due to the fits happening whilst in the bath or in a situation where the person can seriously injure themselves when they fall.
What you are refering to is if a fit goes on for too long then brain damage can occur but it is, as in most things exceptionally rare- think of how many epileptics there are in the country and how many cases of this sudden death due to fits there are . its so rare the newspapers always pick up on any inquests about this.
I can't tell you it never ever happens because it can but you are much more likely to be hit by train say than this happening to your mum.
It is good that she is getting to see a neuro and hopefully getting her fits controlled but its more important that she does not hurt herself during a fit and does not bathe alone for example.

[JaneC]

Daisy, I promise you that SUDEP is really rare. It freaked me out when I first read about because my 14-year-old daughter has had seizures. It's very, very unlikely your mum will get it, honestly, but there are some things you can do - if she has meds make sure she takes them; if she falls asleep after a seizure keep and eye on her; and make sure she gets to the neuro and they try to get her seizures under control.

Also, I don't know how general this is but the people I have heard of whose cause of death was given as SUDEP were teenagers who weren't very good at taking their meds. I'm sure your mum will be fine but, as I said, make sure she sees the neuro xx

[JaneC]

PS - there's a good explanation about it on here if you go down the menu on the left until you came to SUDEP x

http://www.epilepsy.org.uk/info