Interview EP22

Age at interview: 39

Age at diagnosis: 25

Brief Outline: Diagnosed with epilepsy in 1988. Tried various drugs, and had neurosurgery in 2000. Has been seizure free since surgery, and stopped taking medications (lamotrigine and carbamazepine) a few months after neurosurgery.

Background: Recruitment consultant; single/engaged, no children.

Explains that stress played an important part in the onset of her epilepsy.

I had CT scans, MRI scans, and it came about that I actually have a scar, had a scar on the temporal lobe caused as it turned out by being a forceps delivery at birth. 

Well my parents were great obviously, but it came about actually later that my parents were actually going through a divorce at the time and the stress from sort of being in the middle of it brought the epilepsy on apparently. So although I had the scarring since I was born, it was stress that actually sort of aggravated it. They hadn't actually split up at the time, so they were brilliant, they really were. But I was having the petit mals that you get before, anybody who has epilepsy will tell you how horrific that is, its terrifying, its just like having a bad dream, the taste in the mouth. 

Explains what happened when she had a status epilepticus episode.

Well luckily I only had probably half a dozen grand mal seizures in those twelve, fifteen years of having the epilepsy and it was actually diagnosed as complex partial seizures and I had one bout of status epilepticus which is when you have a fit, come out, go back in, come out, go back in, and terrified my poor mother (laughs). But that was just the one off.

It was my birthday, and I'd been out with friends and drank much too much and I think that's probably what caused it. My mum was there luckily and if you want me to describe it, she's told me several times that she'll never forget me being in this horrendous sort of distortion. My whole body was twisted up you know, like in spasm, and she said I seemed to sort of, my eyes went back up in my head, made this horrible choking noise in my throat and then I appeared to sort of come out of it, went back into it. And she said this happened several times that she just thought right, although she'd done the St John's Ambulance course she was used to me and my fits and what to do, whether it was a complex or whatever, even grand mal, but this was pretty terrifying. So she got an ambulance and the next day I ached, I remember aching, my body had been in such spasm. Some people have to go through that every day you know or every other day, for me it was luckily just a one off. 

Discusses coming off anti-epileptic drugs after having neurosurgery for epilepsy.

Have you had any, are you taking any medication?

No and I actually, I have to say I stopped probably two or three months after the op. I just took myself off it, I thought that's it I'm not going to have any more. 

What were you taking?

At the time I was taking Lamictal, Lamotrigine and Tegretol I think. I'd already stopped taking the Tegretol.

Because you'd had side-effects with the Tegretol before.

Oh God yeah, blurred vision, yeah it was horrible.

But you were on those. 

Yes, yeah, and I just gradually, well I don't know if I gradually stopped taking it or just stopped because when I went down to London for the follow up consultation and he said 'Are you still taking the drugs?' Because by law you're supposed to keep taking them and I said 'No I haven't taken them since about two months after the op,' and he couldn't believe it and he said 'You haven't had any fits?' 'No'. I just kind of knew, I just felt when I woke up I thought 'God I'm not gonna, its gone.  

So you stopped the medication after about three months and you've been seizure free and medication free.

Yes, completely, yeah.

For? 

Well that was September 2000, so two years this, this September.

Discusses her concerns before having surgery for epilepsy.

About '98 my mum decided that I'd been pushed around from pillar to post long enough, testing with all these different tablets and we weren't getting anywhere. And I can't remember exactly how it came about but she discovered that there was an operation suitable for people with epilepsy with a focus, but they had to have the focus, the part of the brain that could be operated on. So I started, I went down to see Professor X and I was at the [hospital] for two weeks. Had the video telemetry at the [hospital] and miracle of miracles they said 'Yes you have got a focus on the brain, and yes we can do something'. It was just fantastic. 

Well I was worried because obviously with the brain, it's just a mass of electrical impulses isn't it, and I was a bit worried about, they were fantastic. Right from the word go they said 'These are the possible causes' and the main worry was damage to peripheral vision, which would have stopped me from driving. Luckily that didn't, touch wood, happen. And slight paralysis on the left side because it was on the right and left side might have been affected. Possible memory problems, speech, but I just looked at it as a whole and with my mum and we sat down and said 'Well I've got no sort of quality of life now, so I really haven't got anything to lose.' And I'd been given a chance to have, I felt so honoured to have been told you can have the op and so many people couldn't. 

Recalls some of the changes in her life since having surgery.

People even now say to me 'You are so different.' You know I go out, I had to teach myself road sense because now I go out on my own, you know, I have to look both ways to make sure there's nothing coming. Before I would probably be holding on to somebody, which is strange. So you've got to teach yourself to live again, you have.

And the first time I went shopping on my own and I rang mum up when I got back and I just burst into tears, I said 'Mum, I've just been shopping on my own!'. And she burst into tears and so did I, and it sounds such a stupid small thing to anybody else, but its not, to walk round on your own trying on clothes. It took a lot for me to, to do it, but you know I make myself do it now. Just little things every day, you know little challenges, but I think I'm more confident. Definitely.

Praised the information and care she received from the consultant, but wondered why she was not...

But they went through it so many times and I was given, right up to the very last, the morning of the operation, like [the surgeon]  came and sat on my bed and said 'OK, we're just going to give you some Diazepam,' popped me in a wheelchair, 'whip you up to the scan, give you a MRI.'  He made it sound as though he was changing a car tyre.  

He was so matter of fact about it, brilliant, he really put me at ease, right up to the last minute, given the most incredible care and attention. 

'You know and it wasn't because of them that I got the surgery, it was because of my mum, you know made a point of finding out if there was an alternative. But it certainly wasn't handed to me, and that's another thing, people must try and find out if their epilepsy can be operated on you know. 

But it's a shame that then they didn't say right lets put her through and see if she's got a problem we can operate on.  I'm not really sure, I'm not really sure what lengths mum went to, to find out whether I could have the op because it seems so long ago now. But I'm sure she'd know, if she was here she'd tell you. But she had to, she had to sort of get up and go and find out, nobody ever said lets send her to so and so and find out if she can you know. So that concerns me and whenever anybody says to me' 'Oh I know somebody with epilepsy'. I always say 'What causes it?' 'I don't know.' 'Well go and find out, there might be a chance you could have this op.' you know, that's quite concerning that there's probably a large percentage of people with epilepsy now this minute who could have what I had. You know, and if my mum hadn't made a point of finding out, I'd still have it.
 

Explains that anti-epileptic drugs can also make people feel depressed.

I was very scared and of course to lose my job as well, very deflated and you know felt a bit like a freak of nature. But I thought no I'm not going to put up with, and although I hadn't worked for them for a year, there was nothing I could do about taking them to a tribunal, but I just sort of tucked myself in, you know, and got on with it you know. 

Did you feel depressed at this stage? 

Very. Very depressed but I think also anyone with epilepsy will tell you the drugs can sometimes be worse than the condition you know. All the side-effects were horrible, especially Sabril, uh no Tegretol was. 

I think the first five years were the worst for me. But then I realised that I was stuck with it as I thought then, I'm going to have to do something about it. So it's probably after about five years, yes. 

Emphasises the importance of raising awareness of epilepsy.

I think a lot of people, I said earlier that I think people think that epilepsy, because its the brain and because it does sometimes go with cerebral palsy and Downs Syndrome and other neurological things, people think, they don't expect somebody who looks, well whatever 'normal' is to have epilepsy. And I think, and there's a lot of famous people with 

epilepsy, past and present. I mean Charles Dickens had epilepsy, Edward Lear, Byron, Joan of Arc, you know, Einstein, Julius Caesar. Its supposed to be a sign of great intelligence, I'm not quite sure where I fit into that, but you know if people with epilepsy could make, Rick Mayall for example, could stand up and say, so that people, youngsters could see that famous people, pop stars, actors have epilepsy as well. If there was just more awareness in that direction. You know, even if it was just talked about more and I know a lot of people with epilepsy won't talk about it. I don't think Rick Mayall really wants a lot of people to know about his epilepsy, um. Max Clifford also has epilepsy and notice I say has epilepsy, I never say is epileptic because I think that's a bit of a label as well, you know. Get more public awareness, talk about it more you know, bring it out in the open, in shows like Casualty and Peak Practice.

And maybe documentaries?

Yes, definitely, yeah 

Speak to, never ever hide your epilepsy. Always talk to people, because by talking to people, just getting the word epilepsy mentioned is great in itself you know. Just never cover it up, hold your head up and just be proud to be, you know, there'll be people who don't understand but they're not worth knowing and if that's the way they want to be, then its best you don't have anything to do with them. You know just don't ever be ashamed of it I think. 

Discusses taking an employer to a tribunal and some of the problems she had at work.

I've lost my job five times because of epilepsy and it was never a problem to me but the people around me, a lot of people just couldn't handle it. I did have, I know just because I made a point of finding out that if an employer takes you on in the knowledge that you have epilepsy, then they have to meet certain health and safety criteria, then that's up to them.  As long as they know you've got it when you start, they've got to look after you. So I took one company to tribunal, they actually settled out of court.  And the other four I didn't bother, no I hadn't been working for them for long enough so I couldn't really do anything about it, but you know, that's five times. 

Was it the colleagues around you that made you feel very uncomfortable or the management? 

One particular company, I'd been with them for about eighteen months and they had an extension built on to the existing building. And while they had the extension, just as it was being finished, they suspended me on full pay while they found out whether I would be safe to work in the new extension or not. Which is crazy. So I was off work for six weeks, totally humiliated, feeling isolated again and sort of made to look you know, and while I was off I made a point of finding out, I wrote to ACAS, TUC, all sorts of people. 'Where do I stand legally if they turn around and say we don't want you here.'  They tried to, I think they'd just had enough of the epilepsy, it was pretty bad at the time, I think they were just trying to shove me out the back door you know.

Discusses her plans to take driving lessons and how this will affect her life.

Well I've just, future plans is quite topical because I've just been on the phone to the DVLC, I'm just waiting for my licence to come back. As soon as that lands on the mat I'm going to do a week's intensive driving course and to me, that will open so many doors for me. I mean my career had to be put on hold, you know in the building industry because I couldn't jump in a car and go and visit customers and clients and things. So that to me is going to be the biggest change in my life, being able to drive. Being a keen photographer as well I can chuck my cameras in the car and go and take pictures. To not be able to drive is just suffocating. That will be the biggest, the biggest thing for me.