I hate epilepsy.

[LetThereBeRock]

I just need to vent I guess.

My mother has epilepsy,though it hasn't officially been diagnosed as such, everything points to it.

She had her first grand mal seizure a year ago,though had some seizure activity a few months before that.

It's a year now and we're still fiddling around with medications trying to find the right drugs and dose to stop these seizures.

She's been having one a month for the past 6 months,with partial complexes afterwards and general seizure activity that can last for a week at a time, and while they were originally during the day now they're nocturnal.

Last month was the worst.She had three seizures in one day, she'd never had more than one grand mal in a day so that really concerned me.

And I've just had a call to say she's had another and I'm paranoid she'll have multiple seizures again this time, which may result in her being admitted to hospital as happened last time.

We saw her neurologist last week and he recommended putting her on
Keppra in addition to Lamotrogine.

I hope that this works because it's been incredibly hard on my family and with today being the anniversary of her first seizure it's even harder to take. Everytime we think we're getting somewhere she has another.

Neither of us can stand another year,or even another month, of this hell.

Hi LetThereBeRock

Sorry your mum is having such a tough time. When you say that she has not yet been officially diagnosed, has she had things like an EEG and/or MRI scan?

It can take a long time to get medication sorted out, and often it does need a combination of drugs to get on top of things. There is also the possibility that the seizures may be not be epilepsy and so the drugs would have no effect.

Good luck - I know that it is a worrying time for you.

I sympathise, I really do. My ds (11yo) has epilepsy, and is also on Keppra, and has just started lamotrogine.

He also has seizures weekly, sometimes daily, then some periods where he is ok for a few months.

It is a living hell for us all, not knowing what to expect next.

I haven't got much advice I am afraid, just to let you know that you are not alone in hating it, and having had enough.

It is very stressful.

I hope you have some extra support? Family? It's not fair for you to help your mum by yourself.

I'm sorry I can't help. The only thing I do when getting very stressed is to call the epilepsy nurse for a chat and to get things off my chest. Does your mum have an epilepsy nurse?

Well she did have 3 grand mals and 4 complex partials.

She's had every test known to man over the last year.Her neurologist did say it's looking like epilepsy so hopefully he'll officially confirm it soon.

Every time the dosage has increased we've had a little longer between seizures so I'm hoping the Keppra will be just what we need.

I do have some family who can help but my mother and I bear the brunt of it. Most of the time it's bearable but when you have a really bad day like today it does get you down.It's so hard to see her suffering.

We don't have an epilepsy nurse yet though hoping one will be assigned soon.

I may call Epilepsy Scotland when I need to vent.They were very helpful when I first called,after her first seizure, and they're good listeners. Helping to get my feelings down on paper,or on screen, as I did last night also helps.

I'm very sorry for your and your ds Twoisplenty.I can't imagine coping with such frequent seizures.
My mothers monthly seizures with occasional complex partials inbetween are bad enough,and the constant fear of them.

It's such an awful condition.I never realised just how bad it could be until my mother developed it.

I hope the Lamotrigine will help your ds and that they can get it under control soon.

Thankyou all for the kind wishes.

Hi Letthereberock. I hope your mum is feeling a little better. And I hope you are a bit calmer about it all. I know how much the stress can take it out on you. I don't understand why they haven't diagnosed epilepsy yet, when they have categorised the seizures as being "grand mal" and "complex partial". I hope they sort this out very soon.

It sounds like Epilepsy Scotland sounds a good thing to help you process the strain and worry. And MN too!

Keppra has worked quite well for our ds, but his epilepsy seems to get used to medicines, so we will be weaning him off it once the lamotrogine kicks in. (Don't be concerned about this for your mum, though, our ds epilepsy is rather stubborn).

For us, the situation is rather different anyway, because our ds also has cerebral palsy. Hard to explain, but he will never be on his own, or lead an independant life, so epilepsy won't endanger his life (ie he won't have a seizure whilst crossing the road alone for example).

So that reduces the stress a little.

There's a few of us on MN who have to deal with epilepsy, so I'm sure if you keep posting, some good advice will be along.