Interview EP04

Age at interview: 51

Age at diagnosis: 15

Brief Outline: Diagnosed with epilepsy in 1966, and had an epileptic stroke in 1986. Has tried various drugs over the years and is currently on lamotrigine (Lamictal), which has not controlled the epilepsy but has led to an improvement in quality of life between seizures. Current medication' lamotrigine (Lamictal).

Background: Teaching assistant; married, 2 children.

Explains that he was seeing both neurologists and psychologists.

The 'O' Levels came up afterwards and I was very nervous and I fainted and blacked out. The, at the time I was seeing neurologists and psychiatrists. The neurologist said it was a psychiatric problem and the psychiatrist said it was epilepsy. This has happened in later life as well. 

...There is an area I'm not happy with because it happened to me and it happens to many other sufferers, especially with temporal lobe epilepsy. Its that the consultants dealing with the epilepsy think that there's a psychological problem, which may well be correct but they send you to a psychologist who then says its an epileptic problem. In various parts of the world the two go together. 

Explains how a change in medication led to an improved quality of life between seizures.

The, I had been at the same time, I had been helped by the introduction of a new drug in the early 90s. I was pretty zombified as I said before with various different drugs, and Lamictal came on the scene. This drug was the one that changed my life, although it hasn't stopped the fits, I have about, a fit every two weeks, it has made life much more bearable in between fits and I am not a zombie anymore. 

Ten years ago I would not have been able to speak as I am speaking now, I could only string a few sentences together.  So keep, if you are suffering with drugs, keep hammering at the doctors so that hopefully one drug will suit you. Lamictal doesn't suit everybody but it certainly helped me. It still helps me, so its now the only drug I'm on and I still need to be on it, but it does, it has certainly helped me carry on with life.

Explains that he has homeopathic treatment and recommends going to reputable, registered...

I was also helped by a homeopath, I'm still helped by a homeopath who does, there's one particular remedy given me which helps calm me down, and a calmer person is less likely to have fits. So I think it's a mix. I think it's a mix of the right drug for me now, I'm now on it [Lamictal] just by itself and even if I have fits they're usually because of tiredness, perhaps the last one because of a lighting problem, stress.

... If you go to someone who is registered as a particular member of a society, either reflexology, acupuncture, whatever, they will give you an honest answer. But do go to someone who is registered and preferably someone who has a good reputation.  In the case of myself and the homeopath, it was very much three or four people recommending him. And I think that its again quite important, the, so do go on. I think recommendation is a good one for the, I don't think there's any problem in trying things. Probably, I would suggest that you're in close contact with your doctor or consultant on these matters. 

Explains how not driving affects his family, and the travel concessions available to people with...

The problem, again I'm being a bit negative, but the problem of lack of driving does impact on the family because there's only one driver, in our case and my wife does have a bad back problem as well so that she does, she can only drive for about one and a half hours at a time and then has to have a rest. Of course if I was able to drive then travelling to Scotland where we like to have a holiday would be much faster, but it isn't It does mean that, we've got active boys, especially the younger one who plays a lot of football, I can't really take him round the countryside. But my wife, who isn't so fond of football, finds herself going around with him. So that is, is a factor. 

As far as the sufferer is concerned they have to rely on public transport which is very up and down. And its very frustrating sometimes to wait an hour for a bus knowing that you could probably have walked it and if you had a car and driven it you'd have been there in five minutes. What I would, being positive, do make sure you get your best benefits from transport because you can get a disabled pass for the railways. The Epilepsy Association has fought long and hard with the railway companies to make sure that we could have disabled rates because we were medically unfit to drive. So it was quite right that we should have rail cards, cheaper rail cards. So do fight that one. Your Local Authority may be able to help with cheaper bus fairs. Certainly where I come from, I have a bus pass that allows me any journey is 20p. This is because I'm medically unfit to drive.  Do look into what you may be allowed to do. 

Notes some of the possible risks with electrical equipment and sports.

The other problems that sufferers do have are things like electrical equipment and what have you. And I find that if I'm not one hundred per cent, I've stuttered a little bit recently in this interview, it is difficult for me to play around with electrical gear. So one has to be careful and sensible about it.  It's important I think when one, a power breaker is very useful with electrical equipment. Sporting-wise, I used to love being goalkeeper.  It's not the most sensible thing if you've got a head injury, damaged your head, because I was one of those goalkeepers that rushed at people's feet, that was my strength, rather than brilliant diving saves!  And so I did get knocked out on a couple of occasions - it didn't help. This, I mean one has to be sensible and that wasn't a very sensible thing to do. So I now content myself with just watching football. But it is, and I also developed a liking for cricket, which was more sensible but of course one has to be careful about the right protection etc. 

'So I think one has to be sensible and go for sports and things that are, are not going to aggravate the situation. But that doesn't mean one doesn't do any sport. I know there are several sufferers who run marathons and things like that and I think that is admirable and I think that those who can do that should because they do raise a lot of money.

Advises that each person should work out their own limits as to safety and risks.

Another matter I think is what can you do with epilepsy. You are frequently told you cannot do this, cannot do that, it's too dangerous. Yes, there are certain things that you shouldn't do, like going up the highest ladder. But I found that there was a time, in the early 90s I was very cautious and wouldn't do this and wouldn't do that. And I remember I was on a north Cornwall beach and my father-in-law in his 70s was surfing on a belly-board. And he kept on asking me to belly-board and I wouldn't.  So in the end I decided to shut him up and to have a go on the belly-board. And I thoroughly enjoyed it, it was exhilarating and I think it may well have been the time when I really felt that I was able to cope with the epilepsy better; I was less sorry for myself. And this is where my black sense of humour came in' I felt if I was going to die and have a fit on a belly-board, at least it would be a jolly good way to go. 

Since then I haven't done anything silly but I've enjoyed stiff walks up mountains and things like that. And I think it's important, as long as you know your parameters, not to be overly protective. I'd say this to carers as well as sufferers but  don't be silly, go within your parameters in all walks, whether it be your employment, your leisure, and I would strongly advise that.    

Discusses some of the problems children might have to face and advises accepting help from others.

It's difficult for the boys to grow up with an epileptic parent. In some cases they can resent it; in other cases they can be very caring. It is difficult to actually, I think that having children and helping them understand is difficult. Please be patient with them. In the case of my elder boy, he couldn't really understand it, but now at 18 he actively helps me with the librarianship of the local [support] group and is very understanding. So this is a great boon. I think it appears that some of the reasons why he may have been a bit horrible to me when he was much younger was that he was actually worried about what was going to happen to me. And there had been some deaths within the local group and he was actually very worried. 

The other aspect is, I have spoken before about having young children, this is a wonderful thing to have but there is an impact.  The um, in my case although I cannot remember this because I had a difficult time in the 80s where I can't remember very much at all, that babies fits during the night, uh, babies' cries during the night - sorry I do sometimes get the wrong words - cries during the night did trigger fits. And especially as many sufferers do need a good night's sleep this can be a problem.

I think if one appreciates the problem one can do something about it, but it's something that word of warning, sorry -

Don't worry.

Word of warning, to anyone who is thinking of embarking on a family, I think it's important to try and ensure that you have a lot of help around, parents or relatives or very good friends to help in those matters so that you can try and regulate yourself, your sleep, and try and cope better.