Interview EP19
Age at interview: 43
Age at diagnosis: 27
Brief Outline: Diagnosed with epilepsy in 1985. Seizures have been controlled since 1992. Current drug treatment is carbamazepine retard (Tegretol Retard) and sodium valproate (Epilim).
Background: Area safety advisor for Royal Mail; married, 3 children.
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Discusses his attitude of getting on with life even though he has epilepsy.
Discusses his attitude of getting on with life even though he has epilepsy.
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So at that point obviously it was difficult but we set to and decided well there's not a lot of point sort of you know worrying about this, it's something that you've got to get over, it's not going to change anything you know by sort of sitting there and being sorry for yourself. So at one stage we actually decided we were going to try and run our own business. It was only because we couldn't sell our house that we didn't get the chance. So we actually even went to that sort of extent that we would, once I came out of the police, sell the house and actually buy a little business. Which didn't come off but we were prepared to sort of, if you like, forge ahead and not let it worry us.
Describes his experience of simple partial seizures.
Describes his experience of simple partial seizures.
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Explains that lack of rest and shift work used to trigger his seizures.
Explains that lack of rest and shift work used to trigger his seizures.
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You did?
Yeah and I did, I did nights for a full year and it started to affect me after a while. I started to feel very light headed and having dizzy spells, and I think it was all related to the fact that my tablets were balanced so that the majority of my tablets were taken at night, so that they were beneficial to me in the morning, whereas I was working the opposite way round all of a sudden. So after a while I did notice a big issue there, so I had to come off nights.
Recalls his feelings of tiredness when first using anti-epileptic drugs.
Recalls his feelings of tiredness when first using anti-epileptic drugs.
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...Now it doesn't have any effect at all. In fact taking the Epilim, other than control, other than adding on to the Tegretol and helping to control me, I've never really felt any side effects from that. In fact throughout the whole period of this like 17 years, the only side effect I can remember is that very drowsy state in the early days.
Reports that he feels slightly dizzy if he forgets to take his medication.
Reports that he feels slightly dizzy if he forgets to take his medication.
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Discusses being open about his epilepsy and the positive impact it has had on his life.
Discusses being open about his epilepsy and the positive impact it has had on his life.
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I would say I've always been fairly outgoing and you know, if anything, the one thing I did notice and I read this and I would agree with it 100%, is it makes you far more determined to prove yourself, to prove that yes okay I've got epilepsy but I'm as good as you, you know the next man or the next person. And that I can actually achieve as much as anybody else, and that if that person can get to that grade in management then there's no reason why I can't. The epilepsy is not going to stand in my way. So in that respect I would say I've probably done more.
...But now I would say you know the positive side of the epilepsy is that the drive it gave me to prove myself has led me to where I am today. And I'm very happy, very happy indeed.
Wonders about the effects of anti-epileptic drugs on his memory.
Wonders about the effects of anti-epileptic drugs on his memory.
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'My only concern really at the moment is I do wonder sometimes whether the amount of tablets I'm taking is a lot, whether I ought to consider possibly adjusting that amount, whether I need to be taking that amount at the moment and what effect long term it's having on me. And I don't know as anybody has really got that answer. So that would be my only concern currently. Other than that I would say that I'm happy and you know life now is fine thank you very much.
Explains how having epilepsy affected his job in the police force.
Explains how having epilepsy affected his job in the police force.
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In the meantime, in the intervening time, the 18 months, the police had basically retired me and I went from - and we're talking about 17 years ago - earning quite a good salary as a police officer, suddenly to be a janitor as it were working at the training centre. I decided obviously that I couldn't rely on winning my appeal because I didn't know how long that was going to take, so I spent the next 18 months with them sort of moving through various stages, taking on different roles, getting back to a better level. Because in the initial stages I'd gone to virtually a quarter of the pay I'd been on originally, which at that stage was very, very hard.
'Unfortunately 12 months later I had a reoccurrence and had to leave the police because it had come back again, the epilepsy. At that stage I was quite happy to go, I think I'd had enough of the battle. I'd been fighting you know this sort of appeal and then struggling, I've got to be honest, I've got to say struggling for a year in the police, and I thought 'That's the end of it'. And I came out.
He had to stop driving again when his seizures recurred.
He had to stop driving again when his seizures recurred.
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His finances were affected when he was moved to another job; he advises seeking the cheapest...
His finances were affected when he was moved to another job; he advises seeking the cheapest...
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But one thing I've always done, irrespective of the epilepsy, is that if I want to buy something I always look at every option and research it to try and find the cheapest solution with the best quality. And so phoning round numerous insurance companies I was eventually able to find companies who were far more understanding.
Discusses his concerns about having children and praises the information he received about...
Discusses his concerns about having children and praises the information he received about...
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So whereas you know you got that impression at the beginning that may be if we had children I would be giving them some burden that would really affect them in their life, if anything it's been completely the opposite. All three of them are doing very well. So that was a piece of advice that I think was best ignored.
And I think that's one of the things that I found beneficial is the Epilepsy Association were excellent. Whenever we wanted advice or needed sort of a reference point or somebody to talk to, they were very, very good. And in that respect helped us a great deal. And I you know felt that right from the start if ever there was any sort of question that I needed answering that I didn't know, like for example the one about should I have children, they were the first people I went to and asked, and they sort of said how ridiculous that suggestion was, that they were certainly the one group of people if you like that helped us most.
Explains how an epilepsy organisation supported him.
Explains how an epilepsy organisation supported him.
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More or less immediately, as soon as I came out of hospital, having been told that I'd got epilepsy I thought, well I've got to find out as much as I can about this, so I contacted them. They as I say were very good, I joined the association, been a member of the association ever since. I even wrote an article at one stage in their magazine just to sort of talk through my experiences and the fact that, having lost my job originally, I'd won it back, which
Did they help you during the case at all?
Yes, well they did because they offered advice. I think what happened was, when I won that appeal, they were the ones that managed to find out that a similar set of circumstances had occurred to another police officer down south somewhere. And as a consequence I became like the second police officer to win an appeal to get my job back. So in that respect, had they not offered that assistance, we might never have found out about this other police officer. And not knowing about this other police officer we wouldn't have known how to have framed our appeal if you like. Basically we followed exactly what they'd done, and then if it was good enough for that guy then it was good enough for me. So we won because of the Epilepsy Association. Unfortunately I had the relapse, but that's not their fault.
Advises joining epilepsy organisations, being open and carers to be patient and supportive.
Advises joining epilepsy organisations, being open and carers to be patient and supportive.
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It's very difficult in the early days to explain how you feel and how it affects you. And for somebody to, you know if somebody gets diagnosed as suffering from epilepsy, sometimes like in my case, apart from passing out, there was not a great lot of visual signs. It's not like you see a sort of deformity on a body or something like that, it's very, it's inside your brain, it's very hidden. But the effect it has on you as a person and how it makes you feel is awful. And I think really you [carers] just need to be sympathetic and understanding, which I got from my family and I would just say be patient because obviously the people have got to get time to adjust to what is now a very, well there's going to be a major change to the rest of their lives. I couldn't have done all this without the support I got.