Paddy - Interview 21

Age at interview: 21

Age at diagnosis: 18

Brief Outline: Paddy was diagnosed with tonic clonic epilepsy at 18. He is now on Tegretol (carbamazepine) and his seizures are controlled.

Background: Paddy is 21 and studying mechanical engineering at university. He is in a relationship and lives in a shared student house. Ethnic background / nationality' White British.

More about me...

Paddy is 21 and studies mechanical engineering at university. He had his first seizure on a holiday at the age of 15. He says it was "pretty scary" as he didn't know what was happening. His doctor said it probably was epilepsy but gave Paddy the option to either start on medication or wait and see. Paddy didn't “like the idea of having a lifelong condition” and decided not to start taking medication. He says he didn't want to be on tablets that would "dull your mind". He says he was "stubborn" and didn't like the "forced routine" of having to take tablets daily for the rest of his life.

The second seizure happened two years later in an A-levels maths exam but he still didn't want to start medication though his mum tried to persuade him. When he had his third and fourth seizures at university, he started to accept that this was something he'd need to deal with and that he'd have to start on medication. He says he is happy now he did and hasn't suffered from side effects other than that sometimes his attention span isn't as good as it was. He is taking Tegretol (carbamazepine) 600mg a day.

All of Paddy's seizures have occurred when he has been concentrating intensely on his hand movements for a period of time, for example when drawing, so he tries to avoid this trigger factor. He still sometimes notices a sudden twitch of his arm if concentrating on doing something on the computer or playing the guitar. Paddy also tries to sleep and eat well to avoid seizures but on a night out he says he doesn't need to think about his epilepsy at all.

Paddy says his epilepsy doesn't affect his life that much. He has a laugh about his epilepsy with his friends and girlfriend. He lost his provisional licence when he was diagnosed and, at some point in the future, plans to take the driving test again. Also, he plans to get a job in engineering, travel around the world with his girlfriend and hopes to live in Paris one day.

Alcohol triggers Paddy's seizures so makes sure he sleeps and eats well before going out and doesn't go out two nights in a row.

What about going out and drinking alcohol, does that affect you?

Well it does, like the way I, the way I sort of think about it is, just a sort of like a limit, like a sort of a threshold where if I go below, I then I could have a fit and I think like everyone's got that threshold but if you're epileptic it's sort of naturally lower. And, mine is sort of lowered by drinking, not sleeping, not eating, so if I am gonna be going out drinking I just make sure that I sleep and eat, I just make sure that I basically lie in bed the next day, which is not a hard thing to force myself to do [laughs]. But yeah I'm just I think of it like overall and I try to balance everything. I do have to stop myself if it's too many like consecutive nights, 'cos I can't. I need to rest and recover as like some people will say that I just like power through, or decide to keep yourself up, but I know, I know that I'm not, it's just not a, it's not something that I can decide about, I have to go back and rest up after a certain while. But for a one off nights it doesn't affect me.
 

At first, Paddy chose not to start his medication because he didn't like the 'forced routine'....

Well I suppose it's just like the idea of a forced routine, as well as it's just having something imposed on me that I had no choice about, that I really didn't like. As I said when I really thought about it, it wasn't even the fact that I had to take them every day, it was just the idea of being forced to do it. I've since realised, I'm not forced and it's my choice and I benefit, there are many people that only want me to take them because it helps me in the end. But I can understand why people don't want to. I was like looking back at myself then now, it did seem a bit, I was being a bit petty really. But I really, I didn't like the idea back then of having it every day. It's 'cos I always think, I don't know I've thought about, well this does still affect me actually like if I go on a night out for example, I have to go home, because I need to go home and take my tablets basically. So there's a limit to how sort of spontaneous I can be, but it's not a, it's a pretty sensible limit.

Well I remember mum and dad trying to persuade me, 'cos obviously they were worried, their primary concern was my health, but I had the worry that if I start taking something like this, then it's for the rest of my life. Like once I start that's it, and I just didn't like, I didn't the idea of having to do something everyday, like I've got no choice, I have to take these tablets everyday. I didn't like that idea. But then when I thought about it I was being a bit stubborn really and just, it was it was like the principle of it, but when I really thought about it there was no need for it to affect anything else, other than the fact that when I wake up I have to take a tablet. But there is no need for it to seriously affect any of my like freedom. So I came about to it in the end, now I think I was just being stubborn. I was a bit a bit younger at the time, and maybe a bit rebellious, going through my punk stage.

So I didn't really like the idea but, I'm glad like I came round to it 'cos one of the fits I had, I really did hurt myself quite badly. The first two were fine, but one I smacked my head on a table, I had a big bruised face and a fat lip, that made me realise that the benefits I get from taking them are easily worth the hassle of just remembering to do something twice a day.

Yeah. You said you were maybe a bit sort of rebellious. Do you remember feeling scared at all?

I wasn't really, I wouldn't say it's being scared, I don't know. At that age I always, I liked to think of myself as like a thinking person I was always really curious, inquisitive about things. I knew that the idea, the basic idea behind the drugs were to slightly dull your mind so it's not quite as excitable at those stressful moments, and, just stops it going over the top. And I just didn't like that, the idea of having to well like dull myself but again like I said I was being a bit stupid really 'cos it's not made it, it's not made a significant difference to me.

Concentrating on specific hand movements when drawing or playing the guitar is the main trigger...

And then like I say, if I'm in that sort of state, if I sort of, anything that I concentrate on maybe drawing, well I sometimes, I'll draw on the computer, and I like staring at the screen doing that or maybe playing the guitar, something like that, I'll just notice a sudden twitch of my arm, and then, I just have to say to myself, to stop. And I put down whatever I'm doing, go and get something to eat or go to bed if it's late. Yeah it does stop me doing things like that sometimes. I don't draw as much as I used to, to be honest because the one, not only because of that but the one time I had a fit, when I forgot to take my tablets I was drawing on the computer, and I just woke up on the floor and thought that was, that scared me a little bit. So I don't do it so much. But that was never like a massive part of my life if I was really, if I was like really passionate about it I'd still do it. That, it wouldn't stop me.

Okay, so concentrating on something is a trigger?

Yeah, that's I think, I think it's always a form of stress, like whether it be, like lights or actual like panic or and mine is just that concentration, and I can see it a, I can't remember if there's two types, there's two types of fits, one which starts from a point and spreads everywhere, and one like just happens everywhere at once. If I'm like say drawing, that's that shake I can, it's you can see it like spreading from my hand to the rest of my body, and it's that point of concentration, but, yeah I've only, it's only that one time that I've ever hurt myself so. I've been quite lucky.

Paddy can take rest breaks during exams. He had great support from the university, especially in...

The university have been really good as well, helped me with everything I needed. There was no real need for me to have extra time in exams or anything, but they give me, they give me rest breaks so if I feel like that, that twitch I'm allowed to just go and sit in this other little room and they pause my exam. So that I don't, basically I can go and sit somewhere else without worrying about the fact that I'm losing time from my exam which is exactly what I need. So they're really good about it. Yeah that first term when it first happened, they were good and I suffered in some of my exams for it, and they sort of compensated for that and when it came to the end of the year and then since then they've just put me like I said in a room so I can have those rest breaks. Well basically in the first year there was the main, the person that is in charge of all the admin on my course, he had a flat mate that was epileptic, so he was really sort of like he knew, he knew what it was like and helped me a lot. When it came to dealing with the lecturers and the people that might not have been so considerate 'cos they don't know, they don't know the circumstances so, but yeah the university were really good. Really good.

Paddy's friends have always been really good and they know what to do when he has a seizure.

My friends are always really good, the first time, the first time in the car we were really young then. It was my friend out of everyone, mum, dad, sister, it was my friend that helped me He'd learnt the recovery position from Scouts, so he, he knew what to do., then there was one in exam, in an exam, which and everyone was really good in that, because that was a difficult situation 'cos there was people around me trying to like, it was a very important exams, it was for deciding whether you get into university or not, but everyone was good and, then my girlfriend came and found me after the exam and, like sat with me. I didn't need to go the hospital then but then the two times at Uni, like I said there was these two people I'd never met, one of whom I'm really good friends with now. He was, he's a lifeguard, so he just moved everyone out and just got a cushion, made sure I didn't hurt myself, then another, another guy off my course, I'm not as good friends with him now, but at the time he was really good. Took me, went to hospital with me twice, and with, a lecturer as well.

Paddy feels lucky because his epilepsy is well controlled and doesn't affect his life very much.

I don't really see it [epilepsy] as a condition like' if I get a form and it says do you have any disabilities, I don't write it down. It doesn't affect me, I take my tablets that's it. They may as well be, those tablets could be like vitamins, it wouldn't make any difference. But I know of other people, my girlfriend's friend in [city name] has got it a lot worse, like to the point where even with medication they have two, maybe three fits a week, and that's, it's pretty serious. With how I feel, how I felt after the fits I've had, I wouldn't like to be feeling like that every, every other day, yeah it's quite, it's serious, it can affect you. And it's serious in the fact that it can affect your job, I think a lot, especially with driving, certain jobs it can stop you which is, well anything that forces you out of one particular career is pretty, pretty severe. But like I say for me, I'm quite lucky, I don't really consider it a problem.

Paddy talks about the different ways he and his friends have a laugh about his epilepsy.

What do you make jokes of?

Hmm, just like that things like I have all my exams in a little like disabilities room, everyone else has to go and find their timetable sheet, what building, what seat they are for each exam, I just stroll up to the same room every single time, always there. They always say why should I get that privilege, just 'cos [laughs] I've got a disability. But they're like I say, joking. But, they're all really good about it and my girlfriend makes fun mostly. I woke up one time to take my tablets but I was sort of half asleep, and I started saying, 'I need my hip hop tablets, where are my hip hop tablets,' [laughs] so she was just like, 'Make sure you've taken your hip hop tablets.' Don't know why [laughs]. Maybe I thought that somehow that taking those tablets makes me cool. I've got loads of other, I've got a kidney missing and broken my arms, I've broken my arm five times. I've got that, it's not a very good medical history. So I'm known as a bit of a weakling, which is fine by me. I don't mind [laughs].