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Epilepsy in Young People

Will - Interview 26

Age at interview: 24
Age at diagnosis: 14
Brief Outline: Will was diagnosed with epilepsy at the age of 14. He is currently on Tegretol Retard (carbamazepine) and Keppra (levetiracetam) and has not had a seizure for four years.
Background: Will is 24 and studies product design. He is single and lives at home with his parents. Ethnic background / nationality' White British.

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Will is 24 and studies product design. He had first seizure at the age of 14 on a London bus. A week later he had another seizure, was taken to see a neurologist who diagnosed Idiopathic Generalised Epilepsy. After his initial diagnosis his school stopped him playing rugby and he had to give up his GCSE design technology (DT) course because it involved using machinery which could be dangerous. The school nurse organised an Epilepsy awareness day and, over the following months, as Will was well, the school relaxed their ban on the rugby and the DT course. He was first prescribed Epilim (sodium valproate) but soon the seizures returned and he was switched to Tegretol Retard (carbamazepine). Despite this, Will and his family went off to ski for a week with no problems. Will was seizure-free for two years and thought everything was sorted. Then, out of the blue, he had another seizure. This was a shock to him and Will says that for a while it was really hard for him to accept his epilepsy and the setback. He says that he “had to suck in my pride and get on with it”. 

It was a big deal for Will not being able to get his driving licence at 17 with his friends, especially because he had always been very passionate about cars and had a pile of “Top Gear Subscriptions”! Will says he is “starting to treat life normally” as he has been seizure-free for such a long time now. He feels very lucky that he is so well controlled by medication and also that he is not photosensitive. He describes muscle twitches that he used to get in his neck or on his finger. These twitches are classified as seizures and Will says they were sometimes followed by a tonic clonic seizure, especially at times when tired or stressed.

Because he is seizure-free, some of Will's current friends don't know he has epilepsy. Will lives at home with his parents and  sister. He says his father tends to be overprotective which he finds quite frustrating. Will says his epilepsy has made him "mature faster" and after the relapse he had two years ago he has become more 'wary'. He has a passion for design and Art and he says his epilepsy doesn't need to affect his work plans.

 

Will felt different from other boys in school. It was difficult for him when the teacher told...

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I have to say I did [feel different]. Certainly in terms of the sporting aspect, I did feel different, because I was willing. Quite a few people just dodged doing sports, or you know, were just complete outside this. And then obviously just dodged it. But I was one of those people who was barred, by a condition, it's like an invisible, screen that I couldn't quite get across, certainly in my fourth year. It was all rosy when I got to my fifth form years so I was, beating people up, you know, in the scrum or whatever so [laughs] yeah. But I did feel different, certainly that those first three or four months when I was back at school with the condition, you know. 

I didn't feel assimilated, socially it was a bit difficult, because obviously everyone was sort of told, they said to me, my Housemaster said to me, 'Right well I'm gonna brief the guys, I'm gonna brief the House.' And it was kind of like, he wasn't addressing me in a bad way but, it was kind of like me standing there kind of and my Housemaster was talking to everyone, so there's fifty-odd lads, you know, of all ages, you know, thirteen year olds to eighteen year olds, just sort of saying, 'Right, you know, well this is William [his last name], you know, and this is the problem he has.' And I was sort of like stood there, he wasn't exactly telling me off but it was more or less, I just felt I would not, I do not want to be in this place right now. He actually asked me did I not want to be present at this, and this gathering, but I just said, 'Yes let's just be grown-up about this and we've got to, you know, take it on the chin and this is the way it is so' ,but it was yeah, I actually blushed it was [laughs] very difficult for me, for him to talk about me in this way in front of, let's just say forty-nine lads so

What was the response from people afterwards?

Well they were actually very interested. So obviously this photosensitive malarkey came a lot into it because, that's immediately what people associate epilepsy with is the strobe lighting sort of thing, but I wasn't one of those.
 
 

Will says he has to be really careful about remembering to take his tablets. If he forgets his...

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I'm a bit more wary about it. I mean certainly in terms of relapses I have actually been caught out. It's kind of like waiting for me to not have enough of the drug in my bloodstream just to say right well we're gonna serve you right for keeping me at bay for so long and it's just like [snaps fingers] like that. So, yeah so obviously I have to be very careful in taking it. I mean if I missed once maybe I can get away with it, but twice, you know I'm pretty much in the red. Yeah so it's very sort of dangerous.

Has that happened?

It has once, yeah, and obviously being at university having to get up early and things I'm very wary that it might happen again because of so many things, you know, I've got my books, I've got my portfolio, got this, got that, yeah, and you know, it's one of those real scares of me. It's either right do I, it's just around of me and normally in my jackets I just got this and the mobile phone and I've always got some spare pills just in case. I mean my tablet box is itemised, you know, for the week so I know what I'm taking, what haven't I taken, if I haven't taken in the morning that. Sometimes this goes back to what my father does, he always checks on me, you know, he just sort of opens this sort of wallet up and says, 'Right well he hasn't taken, he hasn't taken this morning's so I'm glad' knock on his door and say, you know, four o'clock well you better have these and then have this evening's at maybe twelve o'clock.' Something like that, yeah. it's just about keeping the balance, yeah.

Can you tell me of the incident when you forgot to take your tablets twice?

I forgot to take pretty much twenty-four hours dosage so I would have forgotten the morning or I should say the evening and the morning, whichever way. I forgot, crockery was smashed, so. It's just one of those things sometimes you forget about it, you know, we live in a 24-hour-world, there's always something on the television [laughs] worth seeing, you go out to your mates and'

 

Will did a degree in Product Design and is always wary when handling dangerous machinery.

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At university they didn't bat an eyelid, the technicians, very worried about everyone's health and safety. So obviously every time you use the band saw I always, it's probably one of the most frequently used machines but it's actually the one that gets me scared the most, 'cos you're getting very close, your fingers are getting very close to that blade. And there are things where you got a metal lathe, I mean, you know, we're not at school any more we don't wear ties at University so you haven't got, you don't have to get your tie, you know, caught in the chuck, the rotating chuck., so yeah there are things like that that are very dangerous. Yeah, it's very difficult for me to actually imagine how, how I would collapse over a machine. I suppose probably the band saw it's probably the most dangerous machine, and I mean in terms of my condition the freak chance that it happens on that time [laughs], is just too small. It's the same as having a fit while driving a car, while just walking down the street, walking down Oxford Street, any street, anywhere, just sitting on the sofa, but you, you just don't know where it's gonna happen so you have to be cautious about everything. But being that I don't have them that often then, you know, the chances are limited so. But I'm always very wary.

 
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Will has a licence but doesn't need a car in London because it's much easier to take the bus or...

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I was really happy to get my driving licence. Obviously I treat it more as a sort of, it's like I carry around passport just to say that I am this age that I am. I never have problems getting into pubs and bars and stuff like that but it's always been this is who I am. Obviously we're all sort of contemplating getting a car at the moment. Living in London I feel very strongly about the environment even though that I have a passion for cars. We do have one car, it's quite a large car, not a four by four [laughs] I have to say, it's just an over-inflated shopping trolley, for most of the time, we do wander out to beyond London. But because we live so near the centre we can hop on the bus, you know.

 

Will describes staying in a children's ward when he was 14 as 'excruciating'. He had to watch...

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When I had a three bout seizure I went into hospital for four days and I was put in the children's ward. Here's me, I am fourteen and we got a woman next to me who's just given birth to a child who's a bit, the baby was a bit dependent, and then we got this guy who was, seven, this girl who was three and I was just thinking [laughs]. I couldn't take, it drove me mad. I just did not know so I just went to sleep. I read a magazine, watched some telly, but then the usual stuff that was on television was, Playschool or something like that, I wasn't really allowed to watch adult things you know, in the same way. It was excruciatingly bad experience, I have to say. 

I mean if anyone is my age, I mean anyone who is my age at that time should insist that they want to be put in an adult ward. Because, you know, at least you could possibly have a conversation with someone, even though they might want to talk about, I don't know, how great Winston Churchill was, or the Queen and something like that, it's better than talking to someone who says, 'Right well here's a'' Because obviously at the time Teletubbies were just the new fad, so I just said, 'Yeah it's a Teletubby.' And I remember this you have four of these little Teletubby dolls and I just thought, you know, 'that's just fantastic' [laughs].

And you were fourteen?

I was fourteen and I was just thinking, yeah, yeah, yeah, oh dear it was painful it really was. It was actually quite quiet as well, not many people in the [hospital name].

Did you go to see a specialist at that time as well who was a paediatric neurologist?

Yes yes my first was and he was in the outpatients of. It was painted, it had murals on the wall, you know, with Mickey Mouse like that and I just thought 'I'm too old for this sort of stuff I really am'. That was part of the dread of going in there 'cos you just sort of think, it was an absolute racket, it wasn't grown up it was childlike until you got in there to see him, waiting in the waiting room.

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