Finlay - Interview 10

Age at interview: 21

Age at diagnosis: 11

Brief Outline: Finlay has tonic clonic epilepsy which was conclusively diagnosed at 16. He is on Tegretol Retard (carbamazepine) and Keppra (levetiracetam) and his last seizure was 1,5 years previous to the interview.

Background: Finlay is 21 and studies music industry management. He lives in a shared student house. Ethnic background / nationality' White British / Scottish.

More about me...

Finlay is 21 and studies music industry management. At around 9 he started getting absences which went on for a couple of years. At 11 he was diagnosed with basilar migraine and given medication. Later on, he started experiencing tonic clonic and complex partial seizures. Years later, when Finlay was transferred over to adult services he was immediately told that he had epilepsy - which shocked him. He was told he would probably grow out of it, but this never happened.

Finlay says the strong epilepsy medication he's on makes him tired and feel 'doped'. At the moment he is on 800mg of Tegretol Retard (carbamazepine) twice a day and 1000mg of Keppra (levetiracetam) twice a day. He is seizure-free. He's also suffered from anxiety attacks and he says it was sometimes difficult for him to distinguish between an anxiety attack and an aura. He got counselling for the anxiety and got help by learning relaxation techniques.

Finlay says his mum has always been great and very supportive and they talk very openly about epilepsy. He feels epilepsy doesn't affect him being able to drink alcohol but because of the medication Finlay  feels more drunk and more sick than others. He says it is important for health professionals to provide information about alcohol and recreational drugs to young people with epilepsy because if they do decide to experiment, it is better they are well-informed.

The future looks good for Finlay. He has moved away from home and lives on his own. He wants to be a light technician which requires him to climb ladders - and could be risky if he has a seizure - but Finlay says, “That's a part of my life I'm not prepared to change for epilepsy”.

Finlay is not likely to have a seizure during sex because his main trigger is stress.

I think that like in general I have seizures the more panicky and under pressure I feel, the more seizures I have. So if I'm panicking then the likelihood goes up. I tend not to be panicking during sex so it's fine and that's the kind of general indicator. If I have to do something that's like 'whooo' and hard, then that's when I begin to worry but unless, if I'm not doing that then I don't worry at all. It's in the back of my mind really.

Do the girls worry about sex?

I don't think so, 'cos I generally, they don't know as much as I do, and they don't know that people have seizures and during sex sometimes. I don't feel any need to kind of to deliberately worry them, so I don't mention it. I think they assume it can happen at any point, so they must know that it could happen during sex, if it can happen at any time, including sleep. But no one's ever expressed a worry about it and because I think they rely on me for information they go, 'Are you feeling okay' and they rely on me to tell them if I'm not feeling okay. I don't have issues so it's kind of a one way information flow in that I tell them about it, what I'm feeling, what to look out for and that kind of thing, and I hear their worries but, mainly if I don't tell them that it's an issue they're not going to assume it is an issue. And that's the way it's always been really, and that's been fine.

Medication makes Finlay often feel 'doped' and 'more slow and less creative' than before. When he doesn't take it, he feels more alert, though knows he could be taking a risk.

I feel that whatever happens in life I will always be a little bit more slow or a little bit less creative, or a little bit more sleepy than I otherwise would be if I wasn't on Tegretol carbamazepine. That saddens me, that really upsets me, and I've been at the computer at night, and it's been like maybe over twelve at night and I've been quite awake and quite alert and quite happy, and I'm going, 'What's wrong, why am I so, why am I still awake, at this time, I feel like something's wrong,'. And I'll go, 'I haven't taken my medication.' So my body is so used to it now that it kind of, I notice when I'm not on medication because I don't feel sleepy and I don't feel doped.

And, I go, 'Ah, well it means I'm must take my medication', and that's when I realise that I just think, 'God, what could my life be like, how would I feel, what would my personality be like, if I wasn't so heavily reliant on Tegretol.' I'd like to come off it slowly but it's, I know that it's a part of medication and I'd just like to understand how it affects me and even the doctors have said we don't really know why you have epilepsy, we can only give you the drugs that stop the symptoms of it really. I have to go with the doctor's best opinion but again I was so scared of the kind of the results of what happens with epilepsy and everything and I just followed doctors orders. I didn't complain when I was feeling doped all day, I would never complain I would just be like, 'Nope, that's part of what having epilepsy is about, you feel doped.' And now, I feel a little bit more like well, I'm doing things now that are against the doctor's advice and so it makes me question more what can I really get away with? And if I wanna have a good time and I feel like I've had a good week on medication prior to it, and I'm like right I'll go out all night tonight and have a great time, I'll take maybe half the medication that I'm meant to take, or I'll skip a night's medication and that is very very much frowned upon, and I know it is. I know it's bad for me, but I go out and I just feel like I'm free I feel like the chains come off my back and I can run around and just be my old self before epilepsy, and it's fantastic and I love it. Next morning I always make sure I take my medication early and I know that if I told the doctors, they'd say you have to stop, and that's fair enough but, I've tried a few times now, and I feel that I can control it. If I had a seizure then I'd stop because I really have had so many seizures over the years that I really have no fear anymore.
 

Counselling was really helpful for Finlay's anxiety.

The psychiatrist that I saw for the anxiety was more general, and she just talked me through ways of dealing with it, other than about epilepsy in particular. She knew that I had it, and she touched on it, but it was more about I need to calm down and it's all about kind of perception as well, and getting a better perception of what's important and what's not. 'Cos I would have attacks over silly sort of things that I really didn't have to be so panicky about, and I would do the little things to avoid doing the big things, and the big things would get bigger and bigger because I kept putting them off. And so she was like, 'You just need to get a bit or order and rationale to your life, when you have that you'll be fine."

And that's what helped?

Yeah, yeah, I think it helped a lot yeah. I think that all epileptics when you get diagnosed should go to, I think it's clinical psychologist is what they're called, I'm not quite sure, I think everyone should go and see. Because I mean, I remember I was quite young, I must've been 16 or 17, something like that, and I only got to see him a few times. And we played like board games and I drew pictures for him and we played ball games. We threw a ball to each other, he wrote notes while I was doing it, and at the time it seemed very obscure, and very kind of out there, and then he wrote it all down and I just thought yeah, that is, that is what I'm like. And he kind of pinpointed it so fantastically that I felt, 'God that was so useful' and I really was so thankful that I got to see him.
 

Epilepsy has never been an issue in Finlay's relationships though an ex-girlfriend worried about alcohol and AEDs. He goes out with girls who can talk openly about epilepsy.

Most of the girls I've been out with have been, they've okay with it. They've been understanding, they've been like yeah now that's fine. The mistake that I have made, is sometimes I've told them too soon, and they've maybe thought, 'He's telling me this because he thinks we're gonna go out, and we're not going out yet' that kind of thing. So that can be something that's like they think is an indicator that I want to go out with them, and in actual fact I'm just trying to be safe. So that's been a bit, it's never been like a deal breaker, they've never been said oh this is too weird it's too much and then walked away from it. Sometimes they can be interested but they've never, no it's never really been an issue. Epilepsy has never really influenced my relationships in any way. I have to remember to take my medication with me and that kind of thing. And if I'm sick in the morning from alcohol it's not nice if you're with your girlfriend or whatever, but everyone's been pretty you know okay about it and people understand.

Has it been easy to talk with them about it, or have you talked about it?

Yeah, I think if I do have relationships I'd like people, to choose people who have like good communication skills. I don't like to go out with people who would be awkward talking about it, because I'm not awkward talking about it. I think that comes across so it's fine. I have had people who like last one was a little bit kind of she wasn't that approving of like the drinking and that kind of thing, of what I was doing, and missing half the medication like if I have really kind of a live night. She was like, 'I think you're doing the wrong thing,' and we'd have an argument about it, but not to any great extent. They have pamphlets on relationships I think from epilepsy people, I've never had to use any of their advice and I think I can deal with that part pretty much on my own.
 

Finlay didn't drink alcohol when he was younger and found it really hard when his friends went out drinking. He says it's his choice to drink now.

I feel that at university especially, it's such a big part of your life. Especially in a small town where there are no art galleries, there are no museums, there's not a cinema that's within walking distance, I don't drive a car obviously, so it's just like within walking distance of where I live, there's pubs, that's about it, pubs or restaurants. I mean you can choose not to drink, but I find that from experience, from growing up I found it so hard, it's one of the hardest parts of it was that I just didn't feel connected to my friends and I used to, they stopped inviting me out, they'd go. When you're 16, 15 that kind of age you go out and you get drunk especially in Scotland, that's what people do when you're at that age at school and they go out to get drunk. I'm not going out to get drunk, I'm just standing in a playing field, that's raining, and it's just horrible, and so I just stopped getting invited out and I lost friends through it. And I do think that was one of the biggest casualties of me having epilepsy was loosing friends because of the decisions that I had.

So, but you're happy with the personal choice you've made?

I am yeah. I think that I need to review it. Every time I wake up and I'm sick I think this maybe isn't the right thing to do, and I have cut back on drinking. But I think for the moment for me it's one of the biggest issues because I feel that it's such a part of it. I know there are people who don't have epilepsy who don't drink, but all my friends drink, and I don't have the stamina to stay awake at two in the morning drinking orange juice. And they're all being really stupid and I don't feel connected and it's that connection that I missed when I was growing up and without that connection that I lost the friends. I think I lost the kind of the bonding when you go out and have a drink together and that is a shame that I missed that and I know that doctors disagree and that's fine, but it's just my personal experience and I feel that I missed so much of my kind of my growing up time, my like experimentation time that I missed out on a lot and maybe now is the time that I'm experimenting.
 

Anxiety, stress and seizures are all intertwined says Finlay.

I was having these anxiety attacks and I went to see a psychologist and she talked me through it and ways of me calming down. They're so similar to auras, it's difficult to tell them apart and sometimes I think they are one and the same, maybe I'm having the anxiety attacks when I'm having an aura, and my brain knows I'm having an aura, so it's just overload, and I start to panic. It's very hard to kind of go well it's because of epilepsy because I think it's part of epilepsy almost. It's just part of, it's one of the side-effects of epilepsy that it happens to manifest itself in my life because of my circumstances. And because I've been sometimes like slightly depressed, it's part of that as well, it's all intertwined and I find it very difficult to kind of pick apart and go, well I have anxiety because of epilepsy, because I don't think that's the case really. I think it's all just different factors that come together to make me and I've had anxiety attacks but they're a lot better now. I've never lost control in a long time really since I've had like these classes, the breathing exercises. And part of it is that I breathe up here and you're meant to breathe down here, and that's part of epilepsy as well and when I have my auras my breathing goes very shallow and goes right up here. And then I have seizures and I've no idea what my breathing is like when I have seizures, but I imagine it's quite tight and quite fast and quite shallow because I wake up knackered and really out of breath.

As a child Finlay was told his seizures were basilar migraine but later found out it probably had been epilepsy all along.

And at that point went to the hospital and they had a look at me and then they went, 'Well we think that it's basilar migraine seizures'. Now at that point I was like, 'Okay, that's what I have, that's cool', I thought, at least it's not epilepsy it's this other thing, and only years later did I find out that in a lot of cases of people my age like eleven or twelve, that kind of age, they term it something other than epilepsy because it doesn't follow you in records. Because so many adolescents grow out of epilepsy. They did say, well it's easier and more productive in the long run if we just never class it as that, and that way if they grow out of it no one's the wiser, kind of thing, and it doesn't follow you in your driving record or anything like that, so that's what I found out later on, but at the time I was like, 'Okay, basilar migraine seizures, great'.

But then, when I was sixteen I got transferred to the adult hospital, and then the doctor, I remember the doctors at the children's hospital had been quite, 'But why, and this is what you have and it's fine we can deal with it' and at the adult hospital they were quite blunt and I met this doctor for the first time in this proper scary adult hospital and he said, 'Finlay, you have epilepsy, you do not have basilar migraine seizures at all'. I was so shocked at that point, because I remember them at the young children's hospital saying, 'Let's not call it epilepsy because it will change your life if we call it epilepsy, let's keep this because we don't know for certain that it is epilepsy, we shouldn't label it as that because that can have effects. So if we don't know what it is, we might as well not go the full way and say it's epilepsy.' By the time I got to the older hospital and they said you have epilepsy and you need to deal with it now. And that kind of upset me because there were no tests in between my transfer, there was nothing new, I'd been living the way I was living anyway, so one set of doctors interpreted it one way, another set of doctors interpreted it another way, and the second set just said, 'You have epilepsy.' 
 

During his EEG, the strobe light made Finlay feel as if he was having an aura and was 'floating'.

I had the EEG, they kind of put the electrodes on, and I thought 'Oh that's quite funny, I've got this stuff on my head and yeah it's a bit of a laugh', and then I didn't realise they were going to put a strobe in front of your face and I didn't know what a strobe was. And I thought, I just said 'Okay,' and they put this strobe on my face and it started to blink with you know the light. I thought 'Oh that's really uncomfortable', and she said, 'Keep your eyes open please', and I was like, 'Okay I'll keep my eyes open'. It just sped up, so it sped up slowly over about two minutes until the point where it was like hundreds of times a second, and my brain went into I would say a fairly severe absence, and I think that was the point. I think they were trying to trigger a seizure, so that they can monitor what on earth was going on. 'Cos I wasn't photo sensitive before and they were just trying to get something out of me I think. And I was trying to close my eyes and she said, 'No, keep your eyes open.' I can still really vividly remember like the light being like scarred into my brain almost, it was so bright. When I have an aura I lose the sensation in my fingers and my body and I felt I was floating and that's quite what happens when I'm having an aura, I panic. I'm also floating, and I thought, oh God I'm floating oh this isn't nice at all.'

For Finlay, absences feel like moments of 'freezing'. He feels confused afterwards and calls this his 'stupid phase'.

I was very into this game called Championship Manager, it was a football game where you manage, you manage a football team. It's one of these games where it progresses, you save it, and it progresses over years at a time, but obviously it sped up. So like three or four hours would be like a season perhaps, and I was just so engrossed in this game and I would play it with my brother, and he would watch me. I think that he noticed but, because he would say things during it, and I wouldn't respond and he was you know three years younger than me so he was even less aware of what was going on. He thought I was being moody perhaps and I remember I would just be playing it and then as soon as I relaxed and then just kind of freeze and I wasn't thinking, it was this kind of stage where I just, I wasn't analysing how I was feeling I was just frozen. I was just like, hmm, and I would just watch it and I was very still, very serene, after I came out of that I would always be like, 'Sorry what?' And I would be like stupid for about an hour after that.' That's how I would describe my little stupid phase, and because I never felt any particular panic, I would just, I never really raised the alarm. I think I'd probably still do the same if I was that age again, you know, it just didn't occur to me that I should say anything really. And it wasn't that I was scared of what people would think, it was just that I didn't think it was a problem, I was like, 'It's fine.'
 

Finlay had experienced 'blanks' for years as a child and after an incident when playing monopoly with his family, his mum called the GP.

I was first diagnosed at the hospital as having something wrong with my brain at the age of 11, but, about two years prior to that was the build up. It was quite a long slow build up and what that would mean is I would have absences, blanks, in what I was doing, while I played, things that involved quite a lot of concentration, like computer games, or reading a book that I was very much into. And I wouldn't be, I don't think it was an absence seizure, or even an aura, but it was almost like suspended animation, I was almost paralysed, but not in a scary way, I was just, I can't move but I don't feel panicked, I'm just like in a kind of a sense of almost asleep while being awake and I would take about half an hour to come out of that. And I was going through that and I, I was quite confused by it, but because I was never scared I never told my mum and that happened you know every couple of months and it wasn't a big deal to me. But then I was playing monopoly one night, and I was doing something quite complicated, I think I was the banker possibly, and my mum said, 'Could you pass me that note,' and I said, 'What note.' And I was like, she said, 'The note that's in your hand,' and I said, 'I don't have a note in my hand.' And I had, I kind of had a stack of like monopoly money in my hand, and I couldn't see it, I wasn't aware that I had it, or what my role was, I was just like, 'What, why are you talking to me, what, I don't understand, I just don't have any money, what, I'm just sitting at the kitchen table talking. I don't understand.' And at that point mum said, okay, go and lie down, I'm going to call the doctor. 
 

Finlay says he doesn't want to change too many things in his life because of epilepsy.

I think they're [seizures] so rare, I mean the both times were, they were kind of my fault, I had stayed up all night before I got on the bike, and I can't remember why I had the ladder thing, but then again it was my fault I think. It's like you can be hit by car and then it would happen, and a lot of my life revolves around doing things that you could say are risky. Like I don't wear a helmet when I ride a bike, and the neurologists are outraged, they say, 'You have to wear a helmet.' Yeah, yeah okay, but I find that it ruins the experience of being free on a bike so much more, I think that it limits my fun on a bike, and that's not like very politically correct to say that, but it's just what I feel. And again with the ladder thing, you have to be, as a technician I feel you have to be up a ladder, you can't be a technician if you're scared of heights, so if I say I'm not going up ladders' cos I'm an epileptic, then I've lost the job and I'm not prepared to do that. I said to my tutors, I'm epileptic and they asked the questions and I put them at ease and said it's controlled, generally it's fine, I have an aura, and that's how I experience it. If I have an aura, I'll come off whatever I'm doing, that's dangerous and I can sit down, it's happened before I go. I've worked as a barman in restaurants and if I'm working in the ovens, I'll step away from the oven for example and just wait till the aura subsides. But honestly no, that's just a part of my life I'm not prepared to change for epilepsy and generally I try my hardest not to. And with the ladder thing, yeah, I fell off the ladder, but I landed on wooden sheets that were being painted, and so I was covered in paint, but it cushioned my fall. And it's fine and I would rather go through these experiences than limit all the experiences you know.
 

Finlay tells a joke about epilepsy.

'What to do if your, your washing machine's broken? Put your clothes in a bath with an epileptic.' [Laughs] And that obviously is not as offensive, but, I prefer the first one really. Kind of it gets the quiet reaction of 'What?' [Laughs].