Interview EP13

Age at interview: 32

Age at diagnosis: 24

Brief Outline:

Diagnosed with epilepsy in 1994. Tried various drug treatments, but epilepsy is not controlled. Current medication' phenytoin (Epanutin), phenobarbitone (Gardenal) and levetiracetam (Keppra).

Background:

Accountant; married, one child.

Explains that his family were supportive, but they did not tell their friends about his epilepsy.

One of the big things in terms of me then with epilepsy, was the stigma around epilepsy and someone that had it. I work in professional services and I was concerned then that there would be an impact on my career and I basically didn't want to tell the work place at that point in time and didn't tell any friends. My family and I knew and that was it. And it progressively developed so it [the seizures] would happen once every few weeks and then it started to happen more frequently. And I'm now at the stage it will happen, or it has happened six times in a week or twice in a day.

Yes, so just going back to the beginning when you were first diagnosed how did you feel then? 

I was quite upset and slightly scared and just concerned about what, about the implications for me socially and career-wise.

Yes and how did your family feel at that time? 

I think they probably felt likewise, the same as me. You know one of the things is my parents have never told their friends because I adopted the approach early on I'm not telling anybody. And didn't tell people for 2 1/2 to 3 years. As a result they didn't tell their friends and then felt that they couldn't tell their friends 3 or 4 years later.

Comments on the effects of anti-epileptic drugs on his memory.

So I've had two or three proper seizures in my time and the other main effect of it has been the effect on my memory. Each time it happens it's, it feels like I've just gone on a 24 hour day, when I wake up I'm feeling very knocked out, fazed, and I don't remember those few minutes. But also the cumulative effect of it has been that my short term memory is not as good as it used to be. So I actually have better memory of a lot of times in my youth than I do over the last few years, because it's a lot clearer. Basically the long term memory hasn't been affected.

Discusses having cranial massage and some concerns about complementary therapies.

There's one I think that was useful. What happened, I hurt my back, it may actually have been from a seizure, I hurt my back so went to an osteopath who was also a cranial osteopath. And so when he was working on my back he'd also do cranial osteopathy on me and, during that period of time, the seizures were less frequent. But also at that time I tried taking some vitamins which he'd recommended. But I stopped going to him for a time and also stopped the vitamins. But basically my wife also told me that cranial osteopathy was helping.

Yes, so would you have that again or not? 

I would do, I was paying for that privately and so couldn't pay for it on an ongoing basis. 

So why do you think that helped?

I think probably another thing which contributes to it is probably stress. It's hard to know because stress is generally also tied up with times of being tired. But my own personal view is it's all to do with the brain and electric charges that are running round the brain, so the cranial osteopathy effectively is massage of the brain. It helps things to work more smoothly, I imagine that's why it helped. 

Probably the one useful thing to understand would be more of what the alternative medicines could do, and the way in general I think that the medical profession is set up in this country is that there's standard policies on medicine and the alternative medicines are not frowned upon but they're just not really established and so it's not really offered. So the cranial osteopathy I don't think is something which is offered as a standard, whereas it just happened by chance that the osteopath I went to did this and was a bit more into alternative medicine. And it was useful, it worked at that point in time so that's the kind of thing that might be very useful. 

Would you consider finding out about these things? 

Yes I would do, I mean one thing I would say is that probably the cost of going and having cranial osteopathy once a week is probably less than the cost of the drugs I'm on, which don't do that much I don't think.

Contrasts the reactions of two different girlfriends to his epilepsy.

When it first started I was 24, I was single at that point in  time but then went out with a girl a year later and that was, she was very good about it.  And that was very helpful to me, she was the first person outside of the family that knew about it and that, it took me quite a long time before I told her (laughs). I would have to avoid it and for a while, I tried to remember situations where it happened, it generally happens first thing in the morning or late at night and it will happen, it will often happen when I'm shaving. Anyway so I was saying, I went out with this girl and she then had to cover for me when it was happening in front -  because I hadn't told any of my friends - so she would make some excuse for me. And it wasn't until I was almost 27 that I actually started telling some friends, that was the key people, and since then I've taken the approach of being quite open about it. 

Then the next girl I went out with when I was about 27, for her it was an issue. She came with me to the hospital and she was very uncomfortable sitting in the waiting room. There was a video playing at the time showing epilepsy and it was, she didn't like what she was seeing and that became an issue for us. And when we actually split up it was quoted as one of the reasons why we were splitting up. 

Discusses some of his concerns about parenting.

The very next big issue was then my wife and I got married and we had our first baby a few months ago. And the issue of pregnancy was how will I be able to cope with children. And I'm quite fortunate because there's a minute warning that's, it means I've just got to make sure I'm always in a position that I can put my baby down, have her in a secure place. At the moment it's relatively easy because she can't move, she can't crawl or anything. When she can crawl or walk, then I'll have to work out how to deal with that point, but the key point again for me would be how to make sure my children understand what's happening to daddy (laughs). So that they can almost look after daddy and make sure they can look after themselves. But that's you know sort of an issue for my wife and I in our relationship, is how do we do that. I mean one of the things about me having epilepsy is it puts more burden on my wife in that she's the one that has to do all the driving, and there would be concern about leaving the child alone with me at times when it's likely to happen.