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.

Discusses what he remembers of the tests that led to his diagnosis.

At that stage obviously I was having various tests, it's a long time ago now, 17 years so it's difficult to remember, but I do remember having like the scan where you have the electrodes put on your head and they sort of measure. They flash lights in front of your eyes to test what sort of reaction they get from your brain. And that's when they said for definite that I'd got epilepsy because by flashing the lights in my eyes, they could tell from the response from my brain, that there was obviously epilepsy.

I also had a full scan to see whether there were any tumours so I was, my head was put into the, I can't remember the name of the machine now even, but I had that particular scan done. And the guy that did that was very, very good, I mean he actually took me to one side later on and talked me through it. And said that although you know normally they send these results to the doctors he was quite happy to show me that, and prove to me that it wasn't tumour related. So I had a number of tests there, I even remember having one where I had an injection where I think I had fluid, some coloured fluid injected. But again not being a medical person, I can't remember the names of all of these things. But it was, I just saw it as part of the process.

Discusses his attitude of getting on with life even though he has epilepsy.

Again it was just one of those things you know that I always took the view that que sera, sera, whatever will be will be, just get on with it. And so we looked towards you know the day when eventually I would get my license back. 

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.

Right yes, the aura was very unusual and, at that time when I didn't really know what it was all about was quite frightening, even for somebody of 27, so I'd hate to think what it's like for a child. I had it a few times and until you get onto the tablets where you get controlled it's, the control with the tablets takes away the aura. So at the very beginning the first few times it happened, I would be looking at something and I'd be able to see it quite clearly in the same way I can see yourself now, but then in front of that would be like this daydream. And the daydream, as I say, in a couple of instances was I'd be stood on the side of a bath and I'd just be looking down at kids who I was teaching, and I'd be telling them to you know swim backstroke or front crawl or whatever. And it was so difficult all of a sudden when you didn't know what this was about to understand what was going on.

Explains that lack of rest and shift work used to trigger his seizures.

I found that in the early days when I was becoming used to the tablets, that if I did those things that you shouldn't do, like you pushed yourself too hard, I remember one particular day because I was off work a lot, the police when I first found out I'd got it wouldn't let me come back to work. So I had three months basically at home when, apart from these occasional seizures, I was perfectly alright really so I could do anything. So I was decorating one particular day but I did too much, worked far too late and the following day I had 3 seizures in one day. So in those early days I had to start being very careful with what I do. Now I would say that there are very few restrictions on my life and what I do, and the tablets don't really restrict me in any way. So if I stay up late, as long as I don't work shifts for too long, I did do shifts at the Post Office for a year

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.

In terms of my own personal sort of situation, one of the things I found with the tablets very early on was that the carbamazepine was a tremendous sleeping pill if you like. One of my biggest problems is that I can't sleep at night, I mean that's nothing to do with the epilepsy, that's just the way I am. It's a family trait and so when I first got the epilepsy and I started taking the tablets and building my resistance up to them, I spent most of the first three months asleep because it was, you know I would take a tablet and it would make me very, very drowsy. But over time obviously that stables out, has balanced out and now I really don't feel that effect at all. 

...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.

I mean it's got to the stage now where I don't really think about it, other than the fact that every morning I have to remember to take my tablets. And that would be the only thing that I know now is that if I forget to take my tablets in the morning, I start to realise that I've forgot to take my tablets by mid afternoon because I start to get quite light headed. Or you know if I forget the night ones when I get up in the morning straight away I start to feel a bit light headed. But other than that I you know don't consider myself to be a sufferer as such. I have the condition but I don't necessarily suffer any more. 

Discusses being open about his epilepsy and the positive impact it has had on his life.

Everybody I knew, relatives, people that I worked with, when I saw it as being necessary I told them about it. It wasn't something I hid from anybody and I, you know I've mentioned it in the past to many people and it's never been a secret. And I've found that to be very beneficial because I've found it obviously easier to talk about it, it's easy to get problems off your chest when you can discuss it with a wider range of people. And I think people accept you a lot easier when they know exactly what it's all about. If there's a mystique behind it then they obviously then throw up possible barriers and concerns and worries.  But by talking about it openly and not being at all concerned about 'this is what I've got', I found that to be a great assistance.

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.

I've been controlled now for almost 10 years. I've had my driving licence back for the vast majority of that time. I actually have a job now which relies upon being able to drive. I have very little problems at the moment with my epilepsy and if anything really it was a stage of my life that I've been through, and I know that because I take tablets day and night I still if you like am a sufferer but it doesn't affect me in any way whatsoever, with the possible exception of say my memory. 

'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.

I went into work fully expecting as a police officer to tell them that you know I had epilepsy and that they as the caring employer would then look after me and everything would be fine. I went and saw the police force doctor, and yet again another doctor said, he asked me the question "So what did the hospital say to you?" I told him that they'd explained I'd got epilepsy and his only reply was "Oh dear that's the end of your police career." 

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.

I started for example that I'd lost my driving license for 21/2 years because at that stage you lost your license for 2 years, so I was uncontrolled for like 6 months, then the 2 years on top of that, but then of course because of the relapse I ended up with the epilepsy coming back again. So although I'd got my license back, I only had it for 6 months and in total for a period of 7 years I only had my driving license for 6 months, which I think my wife found harder than I did because I'm not the best back seat passenger. So I coped with that. Again it was just one of those things you know that I always took the view that que sera, sera whatever will be will be, just get on with it. And so we looked towards you know the day when eventually I would get my license back. 

His finances were affected when he was moved to another job; he advises seeking the cheapest insurance options.

Obviously in the early days because I mean I can't remember exactly but I was on probably £16-17 000 when I suddenly found I'd got this condition and then went to be paid about £5000 when I was given an alternative administrative job with the police, which was a massive, massive reduction. Obviously you get a pension in the police so being in the police force you are cushioned a little bit from probably what other people might experience, because you do get a pension. But obviously it took a while to build back up to where, you know, I am now. And so for a number of years the answer would be yes the financial constraints were very, very difficult, and we had to cut our cloth accordingly. But we got around it, it was one of those, as I said earlier on, you know you've no choice. It's not a case of, you know you've just got to get on with it. And we did do and then I decided that, as I say, drive forward and try and make something more of myself. And now I would say I'm as well off as I would have been had I stayed in the police. In terms of insurance, obviously there were some very difficult times when it came to trying to get insurance for cars in the early days, because I was you know quoted some ridiculous amounts of money when I first went back into driving. 

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 epilepsy and having children.

But we decided to take a sort of second opinion if you like, and on that advice went ahead and had children and there's been no indication, my kids now are 12, 13 and 16, there's no indication whatsoever that any of them have got epilepsy. They're all doing excellent, one is going through GCSEs and looks as though he's going to be coming out with As and Bs. And my daughter is, just about to start that stage as well and she's doing really well.

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.

At what stage did you contact them [epilepsy organisation]?

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.

Contact the Epilepsy Association, number one definitely. Number two I would say once you've started to research and get advice on the various aspects of your type of epilepsy, is then just to sit back and you know consider your options. There's always a way out and I mean I lost my job through this, I lost my license through this, major impact in the early days, but it was just one of those things that with the support of my family and particularly, as I say, the Epilepsy Association I felt I was able to progress through by just accepting it really. And the third thing would probably to not be frightened of talking about it, so those would be the three main things that I would do. 

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.