Finlay - Interview 10
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.
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...
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.
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...
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...
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.
As a child Finlay was told his seizures were basilar migraine but later found out it probably had...
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.'