Nick - Interview 24

Age at interview: 21

Age at diagnosis: 15

Brief Outline: Nick was diagnosed with AVM (Arteriovenous Malformation) at 15 which causes his epilepsy. He had surgery to remove the AVM but still has uncontrolled seizures. He's on levetiracetam, sodium valproate and oxycarbamazapine.

Background: Nick is 21 and studies engineering. He is single and lives at home with his parents. Ethnic background / nationality' White British.

Before his surgery, Nick wanted to get as much factual information about the operation and risks...

To be honest they [doctors] were never ever like, what the word would be. Well if anything actually they were a little bit blunt perhaps, the professor, with him being a surgical professor, a surgical consultant, perhaps wasn't as used to dealing with people. And he perhaps was a tad blunt for my parents' taste. But for me he was just honest you know. He said, you've got a 3% chance of dying from this every year, you have to get this out. This is the chances of what happens if you go to surgery, we'll do this and we'll do this and then we'll get rid of it, and for me that was what I wanted to hear. Perhaps for my parents it wasn't what they wanted to hear. They thought it was a bit too much information, but I mean, it's never really, as I say, it's always just been sort of I get the facts, and I deal with the facts. 

They always gave me loads of information and pamphlets and how about epilepsy, I had an epilepsy nurse sort of, I was assigned to an Epilepsy Nurse I suppose, and she gave out more pamphlets and was always there, 'Here's my number, any time you wanna ask questions.' It was actually quite good because I never asked about alcohol consumption, you know and how I should be careful with drugs, and stuff like that and they were always very, they were very stressed on how I should be limiting my alcohol consumption, not do anything like drug wise. And I suppose fair enough.

You felt you had enough information?

Oh yes definitely. Definitely for me.

And that's what you wanted?

Yes, I wanted to know, when I get the facts then I can deal with them.

Nick's employer has been flexible in allowing him to take time off work for appointments or after...

The time when I was actually going into hospital, having the embolizations, having cranial surgery, I was like working, officially. I was on the books, I was only getting paid while I was in the hospital. But I mean, they were really understanding, they said, 'As long as you're fine, as long as you're healthy, come and work for us. Whenever you're not fine, whenever you're not feeling good on a day, whenever you've got to go to hospital, go home, go to hospital, do whatever you need to do. We're fine with it, we understand, you know'. I think that I was really lucky to find them.

I've had about three fits in that office, and they always always deal with it. The whole office just get folders and gets up and oh don't start getting in a panic, okay. The woman who runs the health and safety is very understanding about the whole thing, and she appreciates my condition and knows about it, so she knows, [excuse me], I sit down and get them little arms you know how they're adjustable, bumpf, up goes the arms of the chairs so I don't fall off the chair. And she gets the fan out, she fans us with a book and all that sort of thing and then calm down and she says, 'Well are you okay?' Obviously after it I go home, but I mean you say you know, you're your parents, should I call, what do I do about it? So I mean they've always been understanding, and about breaks, and like having to take the day off, and then like having to take the day off after the fit in order to recover properly and then work again. I've in fact operated on reduced hours for quite a while; I worked a 28 hour week instead of thirty seven and a half, which is quite, which is very good actually, so it just happened, I mean I had to deal a whole lot less really.

For Nick, the combination of stress, heat and hunger triggers seizures and he tries to avoid them.

I'm always, ever since we really thought through as to what causes it, which has always been, although the doctors haven't confirmed it, fatigue, I suppose heat, and although this has never been confirmed, being low blood sugar level, although that's always been a common factor, but once those three things, it's always been those three things combined, or maybe two of them at least, and perhaps stress. Stress is also in there I think. But once you combine those factors, I've always gotta think those through, so I mean if I'm tired and I'm hungry, I don't want to go into a cinema or something like that 'cos that has actually happened, where I was tired of an evening and you know had nothing to eat, so I'm trying to fill up on popcorn which is just stupid, and I go into a cinema and then I've had a fit. So it does affect you in that you've always gotta think what kind of environment is this? I mean it has been thought about that I shouldn't go to a hot country, but that's not as true 'cos I mean I know, you know people say dry, wet heat, it's a different kind of heat in a hot country. But if you're in a hot building, even in a hot basement with a band playing loud music, and you're trying to speak over it and you're concentrating on that, that's, it's a completely different environment you know. So it does affect you in that you've always gotta be conscious of what your causes are, and to avoid those causes.

Nick says it's important not to make any changes to medication on your own. He talks about his...

I'm having an appointment with my consultant, 'cos you get regular appointments obviously, in August and, and I'm gonna talk to her about taking down oxcarbazepine because when they're giving you so much information you almost start to feel like you're almost an expert on it. And you take them for so long, you're like, 'Oh, I know all this stuff about that you were telling me, you were telling me these things about this medication, that I know, so doesn't that mean that I know as much as you know, so can I take this one'.?' So I keep on thinking 'Why am I taking down the medication that has a slow release? That's the second most, because levetiracetam by the way is the most advanced, why am I taking down the second most advanced medication that I'm taking? Why am I not taking down this really basic, this decades old medication, you know. Why am I taking this one down? So I thought well if I scale this one down you know. It's always a matter of balance, but then you've also got to take into account the fact that you know fits will happen, well in my case anyway. Fits will happen so you've gotta say well should I really be scaling down my medication or should I just leave it. You know, it will happen regularly then you've gotta say well I've got to examine my medication. Gotta talk to my GP, gotta talk to my consultant. And no you just deal with it. Well I mean you know you should never just off bat just change your medication and you should certainly never do anything dramatic with it, like take it down by 50% or just knock off a whole load. Because that's a very risky thing to do. Especially when you're reducing it, increasing it is not as bad but you should still do that slowly. Decreasing it quickly is well - fit.

Nick's flatmates at university were great and knew what to do if he had a seizure.

What about otherwise, did all your flatmates know about your epilepsy? Or did they need to know?

I think they were aware of it, yeah, for the most part. I'm pretty sure that the people, the girls in the top flat weren't that aware of it, they weren't aware of anything to be honest. If I was being brutal. But anyway. But certainly all my flat mates knew about it, the lads who lived on our side of it, the three lads were definitely, knew all about it. Knew what to do, what to deal with it, the lad who lived exactly opposite me he was, he actually, I remember actually, I actually collapsed, he picked me up and actually carried me okay, this lad is like 14 stone, then although I'm a bit lighter now actually I have to say, I was like 18, 19 stone of man, and he dragged me back to my bed. That is a man you've got to love okay? Dragged me back to my bed, called my parents, got me ice, got everything cooled down, and you know, I've just gone like that. And lots of people knew I had it, people knew cos they'd seen it happen or they'd said, 'Are you coming out?' 'Well I can't come out just yet because Nick is just getting better.' And stuff like that you know.

The disability office at Nick's university was very helpful and even had a free landline...

I've got a lot of contacts, quite a lot of contacts actually from the lady who is the disability support officer at university., she made sure I kept up with regular e-mails always asking, how, the first thing she would ask was how I was, how I'd been doing, there's some more information and so forth, and one of the first things she did was as soon as I mentioned a concern she would think you know okay I'll get back to you in a couple of days, a couple of days later she would come back with a solution. One of the problems was, I couldn't contact my parents inside the halls, no reception. Which is a bit of a design fault for the buildings, but that's not the point. So she made sure she got somebody to come by, install a phone line; install a phone in my room. No charge, university covered it completely, so whenever I had a fit all my friends had to do pick up the phone, press the quick dial button, got my parents on the other end of the line. I thought that was just absolutely brilliant, so I mean I was very lucky there.

Nick has decided not to go on holiday with his mates.

I haven't actually been abroad on holiday, or very far for that matter on a holiday. That sounds kind of weird as a 21-year-old saying this, but, without my parents because I know I think about them a great deal with this, it seems to be that it affects them emotionally a lot more than it affects me. So whenever I'm thinking about should I go on holiday, should I go out, I mean I could never go to somewhere like Ibiza or something like that. I even had a chance to go with my university friends down to Cornwall, and I though I was like, 'Oh yeah, great, sure I'll do that.' But then they said well you know we'd really worry about you, you know, we're not comfortable with this. I sort of said, it was sort of a mix between an agreement and sort of a, 'Yeah, okay fair enough,' sort of thing. That's a good point I don't want to have to worry you, and what if something did happen down there? They don't really know me as well as some of my other friends. 

So it affects holidays. I think is the main thing I would raise there and I've got to think about my epilepsy and who knows about my epilepsy and who would do the right thing by it. I mean a lot of people would just kind of panic and whenever you're out and you have an epileptic a fit, especially in a shop 'cos they're obviously legally liable, they always call an ambulance. You can say, 'I don't need an ambulance", 'I'm sorry, we have to call an ambulance, we're obligated to you know.' I mean, like that kind of happens I suppose, so it does affect that. I mean I know a load of friends who are like, 'Oh let the four of us go off and go to wherever', Magaluf, Portugal, Spain, France whatever, and I just haven't. It's just different I suppose I mean there's plenty of people who do that and they don't have these sort of conditions to deal with, so I don't, I just live a different life. There's nothing wrong with being different. You just adapt to it.
 

Nick says NHS staff are great and work really hard.

NHS are blinking, I love the NHS. You see all these things and it's just like, 'Oh, terrible hospitals, this is terrible, waiting lists, grr grr grrr.' I think, 'What are you talking about? They are wonderful, wonderful people and they work very hard and the nurses do a whole lot of hard work.' You know, I won't have anyone say bad things about them.

Nick is slightly worried about the effect of epilepsy medication on his fertility.

Well, to be honest, it does worry me about I mean how my epilepsy medication might affect me. The fact is, I mean I think on TV a while ago they were talking about how beer and cigarettes and diet can all affect your fertility number count, all that sort of thing, I suppose if I knew my medication affected that, that might worry me a little bit. But again, that's not something I can, I can't stop taking my medication, I would never stop taking my medication. So it's not something that I could worry about in that respect.

Nick says he 'coped with it by not coping with it' and detached himself from it because worrying...

I suppose to coin the phrase; I coped with it by not coping with it. Its not the best way you might look at it psychologically, but from my point of view if I don't think about a problem, if worrying about it and thinking about it all the time isn't gonna solve that problem, which isn't true for all problems, but for some it is, like this, then the best thing to do is not think about it. Is to say right, that's gonna go over there, that's to be dealt with and worried about when I have to deal and worry with it. So that's what I did really. I just didn't think about it, I did my GCSEs, I got on with my life, I did my A-levels, I had enjoyed myself a bit you know, that was just it really. I just got on with my school life, got on with my education, got on with my friends, just lived, live the life you're supposed to live I suppose. But obviously not to the full extent and I was always conscious that I shouldn't drink, I shouldn't you know do drugs, I shouldn't do anything like that, anything that might interfere with my medication. I suppose that was slightly limiting in that respect but you know, I suppose from an adult's point of view that's probably a good thing, but from a kid's point of view, not such a good thing [laughs].

Nick describes the surgery he had to treat the AVM on his brain.

Well, initially they had the embolization, it's when you have an option. That was when I had an option I suppose, usually it's done under local anaesthetic, but I'm not comfortable under local anaesthetic, not when they described the procedure to me. Because it's where they take a really long tube and they take it from the groin in a large artery 'cos that's where the largest artery is, what's that vein' Well whatever, largest vessel, and it goes all the way up your body and into your brain and like they guide it in with I dunno how they guide it in but they do. And they put it in all the correct places and they get little dabs of glue in and they take as many as they can without irritating anything, and then they just take it out. 

Then you know a couple of months later they let everything heal up a bit, and they just come in and do it again really. I mean I had an option where I could have a local anaesthetic, and go in and do it like that. But to be honest I don't wanna be lying on a table with tube all the way up me, up into my head and glue, putting glue in there, I don't want to have to think about that, so I said, 'No, no, I don't care if I don't have to eat for a day, just knock me out and do it.' 

And did you have that many times as well?

Three times, not too many times because it was quite a large one they did it three times but they probably got several blood vessels each time, it was a very good very good series of procedures, very successful. So it was lucky that way.

Yeah. And then followed the surgery?

Yes, and then the first embolization, and then about two or three months the second embolization, two or three months third embolization, and then it was about two days because they kept on having to delay me going into surgery. They had emergencies coming in, I remember we got a little bit agitated but you can't say someone's just been in a car crash, forget them, get me done, I've been waiting ages for this. I mean they're gonna, they will die so, they go into surgery first, they take priority, understandable, so you wait two or three days. Then you go into surgery after the third embolization, so there's no time to grow anything back and they just take it out really.

Nick's friends know how to deal with his epilepsy. They are not too serious about it and the only...

The lad who lived exactly opposite me he was, he actually, I remember actually, I actually collapsed, he picked me up and actually carried me okay, this lad is like 14 stone, then although I'm a bit lighter now actually I have to say, I was like 18, 19 stone of man, and he dragged me back to my bed. That is a man you've got to love okay? Dragged me back to my bed, called my parents, got me ice, got everything cooled down, and you know, I've just gone like that. And lots of people knew I had it, people knew cos they'd seen it happen or they'd said, 'Are you coming out?' 'Well I can't come out just yet because Nick is just getting better.' And stuff like that you know.

Yeah you said earlier that your friends had been really good with you.

Yes, they have. First my High School friends, I was told that I would drift away from them, 'Oh don't worry about that you'll find new friends at university, and you'll drift away with them.' I never have, 'cos they were there when I first found out about it, and we were just always remain friends. I suppose it's probably a separate issue but we've just always been friends about it, and they've always knew how to deal with it, and they are the only people I'll let me tease about it. They're the only, there's only certain people, you have to be a very good friend before I'll let you have a go. And I'll have a go straight back at them, but they're the only, it's only like, I think he once had a go at us, and I was like, I was really upset to begin with, I was like, 'How do you do that man, that's really harsh, that's harsh.' But I had a go in the end, and we just sort of, it made it a bit more, giving it a bit of levity made it a lot easier to deal with I suppose. So I suppose not taking it too seriously is probably the best thing to do with your friends. I mean your parents, well my parents take it so seriously, it's good they're so concerned about me, but with your friends who are also concerned about you, deal with it in a different way. They deal with it by not being serious about it.
 

Recovery from the surgery was physically and emotionally 'tiring' for Nick and progress was slow....

It was tiring. I think that's the main word I can say for it, physically it was always a challenge; emotionally it was always a challenge. I suppose not being able to do something with your arm especially, with my arm. That was the most annoying, but like every time I could move it was like a little triumph you know? It was always working on it, and it was distressing I suppose emotionally, less physically I suppose it wasn't really too much of a physical stress, but it was emotionally it was tiring. Sort of like going to work and doing an office job tiring, rather than doing manual labour sort of tiring. it was always concentrating, always like, 'Oh I've lifted my finger, oh I've moved this finger, and oh I've done this.' But then I had nurses and people around you who go, 'Wow that's great, you're getting this back.' It's always encouraging. And then everyday it gets that little bit better maybe, or like that one day when the morning the nurses would come round and said could you move your arm for me please, and you go, 'Eergh, eergh, grunt grunt grunt, no, nothing.' And then the nurse comes round that evening and the woman goes, 'Can you just try to move your arm for me?' Grunt grunt grunt grunt grunt, arm moves, finger moves a little bit, and then it's like you know, you've just won first place in a race you know. And sort of little triumphs that make the effort worthwhile. But yeah, it's very tiring; I think is the first thing that I would say.

Nick says that in the clinic doctors need to see each person as an individual, not just as a...

I suppose always thinking about the person, because you know with people, they get them files, that's the only one problem I ever had with the medical system, doctors get these files and think, 'I know this person' 'cos they've got my file. I'm not kidding you my file is this thick, okay, and that's only 6 years old you know, think about it. I mean it's good, they've got this great big file, 'I've read all the stuff that's happened to this person, ergo I know this person, I know how much medication they've had at this stage, I know this that and the other' and what they've really done is they've spent, you know, they've spent five, ten minutes before the consultation, or longer, if it's a particularly important one. And they've perhaps read it through thoroughly, maybe they've just glanced over all the headers and the footnotes and stuff, but you know they think they know people. But I think perhaps taking into account the fact that they're not just the folder, it's the most important thing and you know.

Yes the consultation, yes the condition might affect someone in some way, but they might not, they might just be I dunno, okay about it so. And like if I can go back to the guy saying, he didn't just say that's some actual, you've just reminded me actually, he didn't say, 'You've got a 3% chance of dying from this,' he said, 'You've got a 3% chance of this bursting and causing, you know, of like being, of dying from this.' Then he said, 'So if you can imagine that we have a hundred of you, and three of them die every year,' he said that to me. Okay to me, that's okay that's a bit harsh but I'm gonna let that pass man 'cos I'm pretty thick skinned, but that really, really annoyed my parents. I mean can you imagine if you, I don't mean to be you know be sexist but I mean you can imagine if it was like a 15-year-old -lass, perhaps a bit more emotionally vulnerable, perhaps not comfortable with this, worried about how it's gonna affect her future, he just said, 'Three of you die.' I mean what kind of thing is that to say. But anyway yes, to think about the person you're talking to before you say anything really, is to say.

Nick used to get 'twitches' when playing sport when younger and now, looking back, thinks they...

When I was about twelve, thirteen, I used to have problems in like playing games like badminton, would you believe it. When you're always looking up and you were always hitting it down, I used to have things where I would like have little twitches in my left side, and then I'd have to sit down and that was it. And that was that was just something that I used to talk about with my parents, but we never really thought much about it really I suppose and then when something happens you think back on it and say, that was an early sign.