Interview EP16

Age at interview: 21

Age at diagnosis: 11

Brief Outline: Diagnosed with epilepsy in 1992. Has tried sodium valproate (Epilim), lamotrigine (Lamictal) and topirimate (Topamax), though epilepsy is not controlled. Current medication' sodium valproate (Epilim) and topirimate (Topamax).

Background: Customer service officer; single, no children.

Recalls having her first seizure at secondary school.

My very first encounter with it was at the age of 11 when I was, it was my first day of secondary school, obviously I was very nervous at the time. I was in a, in my maths lesson and first of all I stood up voluntarily in the lesson, I couldn't stop myself from standing up, my body just done it. And I just started talking in the middle of the lesson and I was making absolutely no sense at all. I didn't know what I was saying and just started talking gibberish and making no sense at all, and then suddenly I blacked out and collapsed to the ground and blacked out. 

And when I woke up I was in the hospital with all my family around me and that was when I was told that I had had a seizure. And this obviously meant absolutely nothing to me. I had absolutely no idea what a seizure was, I'd never been told or even heard about it before and the next thing I was basically told by the doctor was that I would have to go on this sort of tablet which was at the time was referred to as sodium valproate. And that was basically the end of the story. That was as far as it was put to me.

Explains that the diagnosis of epilepsy meant little to her.

And when I woke up I was in the hospital with all my family around me and that was when I was told that I had had a seizure.  And this obviously meant absolutely nothing to me. I had absolutely no idea what a seizure was, I'd never been told or even heard about it before and the next thing I was basically told by the doctor was that I would have to go on this sort of tablet which was at the time was referred to as sodium valproate. And that was basically the end of the story. That was as far as it was put to me. And then I was just passed a pack of pills and told this is what you have to be put on this many times a day. And that was basically it, that was as far as it went for me at that time.

I wasn't, I didn't realise that there was any more to it, I was just, I was just basically passed these pills and told that I was an epileptic and that's as far as it went.

Discusses the muscle jerks and speech problems she had with anti-epileptic drugs.

And I, whereas before I was on 400 milligrams of sodium valproate twice a day, now it's a case of 500 milligrams twice a day.  Understandably that's not a lot because there's a lot of people out there that are on extortionate amounts, incredible amounts of that drug. Also I'm on another drug that's being mixed into it as well but that's, that's also giving me some other side-effects which is, has been stuff like muscle jerks which is very, very annoying because for example you're sitting down eating something, you get a muscle jerk and your fork goes flying off across the room for example and your food just goes flying on to the floor, for example! (laughs). 

But something else for example, you're trying to think of words, you're having a conversation with somebody, you're trying to think of a word to express a point that you are trying to put across, and you can't think of the word. And you're sitting there trying to process this word and you've got the image of the word in your head and you can't actually say it. And you're trying and trying to process this word in your head but you just can't get it out.

Discusses the problems that arose from stopping her anti-epileptic drugs.

With me, I stopped taking the medication from about, it must have been about two, two and a half years, and because of this I wasn't on any sort of medication at all. I basically believed that I was, I was having, my idea of it all was I was having seizures when I was on the medication anyway. The medication wasn't stopping the seizures entirely so what really was the point of me being on the medication. That was my entire idea of it. So I just thought the best thing for me to do is to just not take any 

medication. I've had enough of taking pills, I'm sick of putting pills down my throat, I've been doing it long enough, that was my entire idea. Because I just got, I got sick of, I just got sick of taking these pills because I, my whole past was just swallowing tablets. The whole, the whole way I saw it was if you picked me up and shook me up and down I would rattle like a pillbox. That was the way I saw it because I was just filled with these tablets. ...Obviously you've got to worry about where you are at the time when you have a seizure, there's risks about, if you're in dangerous situations, dangerous areas of deaths and so on and also SUDEP is very risky. 

But obviously going back on to these drugs again it was very hard as well because when I went back on to these drugs obviously my condition had worsened. And this is proven because still at the moment I am still trying to find the correct combination of drugs for me. 

Discusses searching for information on epilepsy when she was older and the importance of the...

Did you read a lot about epilepsy once you found out you had epilepsy or over the years have you read anything about epilepsy or the treatments, or living with epilepsy, or gone on to websites?

Not when I found out about first having epilepsy because of the age I was at the time. I knew vaguely at the age I was what it was. And I know that, I know that when I went to secondary school and going through GCSEs the teacher first mentioned, it was mentioned once in class in science '...and also neurological conditions such as epilepsy,' and then my ears perked up you know in class sort of thing. But that was it, that was as far as that subject went. But obviously  in my older years I've bought a couple of books and read up on it but the information's all been, its all been same sort of information really. 

But with websites, they've always been very informative. The thing I've enjoyed the most with websites have been chat rooms really because they've always very interesting when you can actually get out there and speak to people that have got the same condition as you have. Especially when you have the opportunity to speak to people that maybe are on the same drugs that you are and they speak about the conditions and the side effects that they may have. And the problems they may have with side-effects, just so that you can say 'Yeah I've got the same thing, I know what that feels like,' so you can kind of bond with other people, so you all know what it all feels like. So in a way, you know that you're not alone out there. 

Recalls the frustration of feeling restricted when she was younger.

The only thing that I found very annoying as I was growing up was things like all my friends, like when it came to going to clubs and stuff, was that girl friends would go to parties and stuff and I couldn't go to them because of the lights, the strobe lights and stuff like that. And I found that very annoying. It was very frustrating because obviously all the girls were going out and that was the in place to be, and you always wanted to be down the club down the road. And I couldn't go to them just because of these lights, and it was really frustrating. And then you go back to school on a Monday and everybody's saying 'Oh, did you see this person down there, oh it was all fantastic, it was wonderful.' And you just missed out on all of it. And you'd just have some crappy weekend doing the same old thing, and you just weren't in with any of it.   

And you know it was just very, very boring after a while because, and that depressed you in a way because it was always your health that was restricting you. But obviously you, after a while you just got used to it and you just started to realise that this was something that you had to accept and there was no point in depressing yourself about it because at the end of the day, there was nothing you could do about it. And if you ended up depressing yourself, then all you were gonna do was make yourself more unhappy. 

Explains that she wants to be on the lowest effective drug dose well before she is ready to...

It's a case of trying to keep them all at the lowest level. Because the whole problem is that if I also, if I actually wished to conceive as well, then the problem is that if, when it comes to conceiving, the problems I have with sodium valproate are also problems such as spina bifida and other such, you know, on to the unborn child. And that's why I need to try and keep my epilepsy drugs to a minimum. And that's why it's a case of trying to mix other drugs in. And that's why we need to try and find a good balance.

...It's just a case of getting it right now so that when we do come to planning, it's all in line and it's all in check and it's all ready because it's hard enough lowering the dosage when you're on one drug, but when you're on two drugs or more, it's even harder, because obviously as one goes up the other one may go down or even up itself. So it will just get even more harder for you and for your body to control it, and to control the drugs. So the earlier you can start before you plan to conceive the better it is. So it's just good to start now.