Interview EP10

Age at interview: 31

Age at diagnosis: 12

Brief Outline: Diagnosed with epilepsy in 1982. Tried various drugs which did not control seizures. Had neurosurgery in 1984 at the age of 13 and in 1998 at the age of 28. Although there was some improvement in the seizures, epilepsy is poorly controlled. Current medication' carbamazepine retard (Tegretol Retard), vigabatrin (Sabril) and lamotrigine (Lamictal) daily, and clobazam (Frisium) when needed.

Background: Civil servant; single, no children.

Explains that his brother first noticed that something was wrong.

You said you were 12 years old when you found out you had epilepsy.

That's right.

And you mentioned that someone said it could be a form of epilepsy?

Yeah, that was my father.

Right, so did he know quite a lot about epilepsy? 

No, it was just basically we used to go camping a lot in France and I was just away. There was an area where they had a couple of table tennis tables, I was away with my brother. And I tended to sort of look up to, sort of like look up, because I think where I had the problems, was up there. And I used to sort of look up to the left a bit, you know. And I was just sort of, go sort of like I say, a trance I suppose, for a little. And then I would be all right. And he, my brother just played the ball to me and you know I didn't do anything.

And then seconds later I came round and he said 'Are you all right?' I said 'Yeah I think so' you know, 'yeah I'm all right.' And I had not realised that I'd had it and he mentioned this to my dad. And you know, and I think I may have had another slight one while I was there and my dad sort of, my dad just said he thought it looked like it could be some sort of epilepsy. I think my dad was maybe a bit more aware than I was that there were different forms of epilepsy. But then we went to [the hospital] and it was diagnosed there.

Explains that his consultant plans to slowly reduce drug dosages.

No, I mean he [the consultant] plans to reduce it, the vigabatrin by 250 mil a month so you know I'll see how that pans out. If that's, you know and see if I can, you know see if reducing it in a much more gradual way will have a better effect. I mean last time I tried to reduce them I don't think it was having a very uh, it wasn't a particularly good time seizure-wise. And it tended to bring them on. And consequently as soon as I took them off, I started to have more seizures quite quickly. Whereas initially the first time I tried to reduce my medication it worked really well until I got down to 1000 milligrams a day, and then when I tried to go down to, this is just with the vigabatrin, when I went down to 500 a day then I started to have seizures. So I pushed it back up again. And they didn't sort of stop until I went up to 2000 so that's what its at the moment. 

Discusses some of the tests he had just before and during surgery.

What they do is reduce your medication, while you're in there and then they sort of prompt you to have a seizure so they can pinpoint it. I then had one, I mean at one time, I think I had to go in there two or three times because I went in one time and I had only one in the night. And they said well they wanted to see if it was different in the day. 

...Then um, then, other than that, the problem being where they had to operate was close to the part of the brain which controls the movements. And you, your speech and movement down my right side. So they had to um, anaesthetise sort of like half my brain and sort of get me to speak, to see whether, you know to see which side of it was. And it turned out that the actual part of the brain was quite central which probably accounts for the fact why I'm left handed in some things and right handed in others. I throw left-handed and I kick left footed and so on. 

So anyway they did those tests you know, and then it was just basically down to pinpointing exactly where it came from and you know how close it was and which side it was. And consequently I had to be, I only had a local anaesthetic during the operation so that they could ask me questions and get me to say you know, they had sort of, where the area of the brain they had to remove, they said 'OK, I want you to,' - it was quite a weird experience. They say 'count to ten.' And 'One, two, three,' and then they'd press on that side, that part of your brain and then you'd go ' - I was trying to speak and I couldn't. And they'd say 'OK, move your hand,' and they would press it and it would twitch and stuff like that. So they could, so I was lying awake for five hours because, well my brain having no sensation anyway. But it, you know, that wasn't a problem. But it was different to be awake during a brain operation I must admit. Most people cringe but I find it quite an interesting experience. 

Explains that, although he has had neurosurgery, he still has seizures.

The seizures, they've been better, not sort of dramatically better but they have been better. Obviously there was always the danger, because of scar tissue, that there would uh, you know still be seizures. And whilst the diagnosis, I had more MRI scans afterwards you know, the diagnosis was 'yes they'd removed the problematic area of the brain'. But there was always the danger of scar tissue. So uh, they have been better, they would probably be better if I didn't touch a drop of alcohol, but you know they've been better but not completely. I'd have say six to eight weeks is probably tops. On a good spell its probably six to, a good spell is sort of like every eight weeks.

Explains how he feels depressed at different times.

I get a lot of admiration from people who say that you know 'I really cope with life well,' but at the end of the day my job does not inspire me. The, I shouldn't think the medication helps but I just find it all like, whilst I'm not saying that I suppress it, I really try and be as positive as possible. But then I suddenly find every now and then I will really get down because you know, and a bit depressed because it just sort of builds up on top of you.

Have you ever thought about having some counselling or life coaching, that kind of thing?

Not really no. I've certainly been thinking about, I mean I've been a bit sort of, things have got on top of me for the last couple of weeks, because I've had a couple of weeks off which is just more rest and recuperation, a couple of visits up to London and things. And then you come back to work and you think, this is a dead end job, you know I've got nothing to look forward to, I've not got a holiday planned, sort of life goes on 

But I think those actual sort of, you know the problems, I do sometimes feel a little bit bitter but, like I say, there are other people who have far greater problems. At least I'm able bodied, I think I do try and look on the positive side of life. But like I said I'm a bit like a pressure cooker you know, I just, every now and then I just sink a bit low - sort of more like a culmination of things. 

Explains that a positive attitude has helped.

But you tend to sort of feel really poor about, feel really low about yourself and sort of think oh you know, I've sort of been dumped on in life you know. 

But when I was in hospital, a couple of beds along was a kid who had been, he was left, he was about 14 or 15 and had been doing a paper round on his bike and got hit by a car. Well obviously in the days when hardly anybody wore a cycle helmet, and he was being sort of fed through a tube and he's sort of since died. Well it slightly puts things into perspective.

...I'd say look at the positive side of it. Don't let it drag you down because it will. If you let it drag you down, it really will drag you down. Like from the times it does, I do find that it just sort of boils over and then I do get a little bit depressed. It can, if you don't look on the positive side, and get on with life and try and get as much out of life, then it really will get you down.  Don't think oh my God I can't drive; oh my God I've got to take all this medication; oh my God I can't do this, I can't do that. And really try and look on the positive side. Don't let it beat you because if, you know, if you just loaf about and be depressed about it then it really will be, you know. You really only have to take a look around you and see that there are people who are in far worse situations. 

Reflects on how the reactions of others and his lack of confidence in making relationships.

To be honest, like I say, I'm not a loner and I do get frustrated when you get to, if you, I mean I've tried dating agencies and stuff and they have, you know you go to somebody and they actually, you meet up with these people and you go on these dates and you know, I'm not afraid to tell anybody that I've got epilepsy because if they don't like it they 

can lump it. 

Like I say every time you meet someone, as soon as they find out you've got epilepsy its sort of, the national sort of lack of understanding of it um, really sort of, its sort of you know they tend to run a mile. And if I don't tell them - and they say yes, plus of course you don't drive, you know I'm so immobile. 

But I think sort of relationships are difficult. I've never really been able to sort of form friendships when you've got those like sort of one-on-one. My brother's got you know like his best friend, he's like as close to him as he is to sort of you know to me and the rest of my family. And I've never really been able to forge that sort of friendship. And you know it may well be that may be purely down to me but I'd uh, more of me thinks that because the crisis of confidence because of the epilepsy, I think that's where my lack of confidence really comes from.

Describes the effects of medication on his schooling.

And from then on really for a few years at school it was a bit of a hard time you know. The first time I had one at school it was all like hilarious and obviously I was only on minor medication then. And that was, that was quite hard for sort of somebody who was like 12. 

And it got better but I mean there's, sort of there was, you know you still got some really negative remarks and sort of like Mickey-taking. And then, as it got, I mean sometimes some of the teachers hadn't been informed which was very poor, although the head teacher had been informed. And so I mean that was hard. Plus the fact that at the time I was on enough medication to really you know, to sort of knock out a bull elephant that I used to... Well, there's no documented evidence but it you know dramatically it's affected my schoolwork. Because it is quite noticeable how it went down hill from then on.  Medication you know, sort of like basically nodding off all the time, well not all the time but you know, but it was like I don't have any trouble sleeping.

Emphasises being positive and keeping one's epilepsy in perspective.

Don't let it beat you because if you, you know, if you just loaf about and be depressed about it then it really will be, you know.  You really only have to take a look around you and see that there are people who are in far worse situations.

One of the reasons why I ran the London Marathon was I saw many years ago one of the earlier London Marathons in the early '80s was a guy who was in a wheelchair. And he had no arms and no legs. And he had sort of stumps to there, and he had special crutches that were sort of like fitted over the joint, socket. And he was sort of pushing himself along on crutches.  And he went over the line, and I was like 13, 14 at that time and I thought, you know, God I thought I had problems. And you see people like that and I said 'If he can do a marathon, I'm damn sure I can.'

You know, so you've got to look and see that there are people like that. And you've got to look at people like the wheelchair athletes, like Tanni Grey and people like that. And they've made so much out of life, in such difficult circumstances.