Interview EP06

Age at interview: 28

Age at diagnosis: 15

Brief Outline: Diagnosed with epilepsy in 1989, which was caused by a brain tumour. Had radiotherapy and chemotherapy to treat the tumour, and seizures were reduced considerably. Felt better without medication and decided to stop taking anti-epileptic drugs. Current medication' none.

Background: Not employed at time of interview; single, no children.

Explains that a tumour was causing his seizures and was discovered during the tests.

And they done several tests, long tests, that's one thing I don't really like, I don't really get on well with hospitals anyway. But the point was I had to have these tests to find out what was going on, what the problem was. I had, then after, from vigorous tests, brain scans and things like that, I was found to have a glioma tumour, not a fatal thing, it was just basically like I had a tumour that needed to, treatment, in this case was radiotherapy.

Well anyway I'll go through these, this treatment, but I also found out that the tumours were, where they were laying on my brain, it was causing me to have my fits, my seizures. And basically they wanted to get rid of the tumour to eventually cure me.

It's been some years now since I've been on the treatment and I still have my fits but I don't have as many as I used to.

Explains why he stopped taking anti-epileptic drugs suddenly and advises against it.

I mean with the cancer you just don't feel you want to take your pills anymore and there was times where I would stop my pills completely without even asking my doctor if I can, which is an absolute no-no. You should not ever do that. You should find out, basically get advice from your consultant or doctor who you're under. Which was a bad thing I did but, as I said, I got it sorted out and with me, with my fits today me now but  I don't actually take my pills any more due to the fact that it seemed to make me feel more worse in a way. I mean I seemed to have got even more fits. I think it was because the tumours in the first place were causing the fits and now that the tumours are gone I was not having the seizures [a malignant brain tumour was causing the seizures and was treated with radiotherapy and chemotherapy]. 

And when was the last time you took any of your medication? 

With me due to, due to the fact that I don't just take my tablets any more. I mean I'm not speaking here to say that you should ever stop the tablets, always go to your doctor - consultant in this case - and ask what basically is the best thing for you to do, don't just stop your tablets like I did. I did the wrong thing; I should never have done it in the first place. And I always find it makes it worse if you do stop them straight away, so always ask your consultant first before you'd go forward on stopping your tablets. 

Talks about losing some friends but becoming closer to others.

I've had this way of going around by just telling, well its like everything else, at first it was very hard for me to come out and state to friends, close friends, that I was an epileptic, a person who had seizures. And this was a tough time for me. But I had, I've got some really close friends in my life now that have, that are actually with me and support me through it. They say 'We're not worried about it, we'll help you with you, with it at the point you need help,' and stuff like that. But I've lost some friends through it, I must admit. But I've gained more, more friends, more loyal friends and I cherish them, I really do, I really do.

Is enthusiastic about joining a support group.

When did you find out about the support group and join it?

It was quite a few years ago. Basically I started the group, being an unknown to what epilepsy was about. And I mean I knew bits and pieces about my fits, what I had to do, what tablets I had to take, you know and stuff like that. But I found joining a support group was very beneficial for me, very beneficial. It helped me with talking to people about my epilepsy as a whole, and also listening to others. And I found that, I found out more information through that, from just one meeting alone than I would have learnt in well say several months. But, and I must admit, now that I understand other people and their side of what they go through with epilepsy, I also find a new sort of found respect of my own epilepsy as well as everybody else's. Yeah I've always loved going to the meetings yeah, and making new friends, meeting people, making friends and that's what it's all about.