Interview EP05

Age at interview: 30

Age at diagnosis: 9

Brief Outline: Diagnosed with epilepsy in 1981. Tried various drugs and, in 1999, had neurosurgery which reduced the frequency and intensity of seizures. Current medication' gabapentin (Neurontin) and carbamazepine retard (Tegretol Retard) daily, and clobazam (Frisium) around the time of menstruation.

Background: Not employed at time of interview; divorced, 1 child.

Discusses the tests used to diagnose her epilepsy and how she felt when she watched the telemetry...

My tests for surgery lasted approximately two and a half years, every six months or so I had a new test. One of them was telemetry, which, I was being video-recorded as well as the sound, basically twenty-four hours a day. All bar the times I went to the bathroom of course. The reason for that is that they wanted to see and see what the brain was doing at the time of the seizure. Another one was probes. Because they didn't actually get a good reading from the telemetry, what they did then was to  insert probes just above the brain, so it was in between the brain and the skull to see if they could get a better reading, which they did. 

I actually asked for a copy of my telemetry video which was one of the tests for surgery. I got it through a couple of weeks later and I did the worst thing possible, I actually watched it on my own. It made me cry to look at myself in a seizure. I can now understand how other people look upon someone having a seizure. It's frightening. It frightened me and it was me that was having the seizure.

Explains that a brain tumour was found during surgery and her reasons for having the operation.

As far as we knew all I had was scarring on the right temporal lobe. We found out that I was able to go for the surgery to remove a section of the scarring. If too much was removed then I could be disfigured in some way. Basically once they'd opened me up, they found a benign tumour which was wrapped in scar tissue. They didn't know it was there, they couldn't see it on the scans because it was covered in scar tissue, you can't see through it. Basically they removed as much of it as possible. And I'm happy to say now my seizures have lessened. I was having between ten and twenty seizures a week, now I'll have about eight a month' big difference. 

They did actually say to me that there was a risk. I took the risk still because I believed it could improve my life and if not for me for my daughter, because at one stage I wouldn't go out, too frightened to take my daughter out in case something happened to her. First of all I was frightened, I must admit, then the more I thought about it the more I knew it was the right thing.

Discusses her depression and how she keeps herself occupied.

There is one thing that I would associate with epilepsy is depression. It comes alongside because basically the restrictions, the stigma etc., emotionally is damaging. I personally am on anti depressants. And once you've suffered with it, it reoccurs. 

'I try to cope with the depression by ploughing myself into something, instead of sitting there and thinking. That's the worst thing possible for me and it makes me worse. Because then the subject of 'what if?' comes up. So I seem to find a job to do or find an interest or paperwork etc., whatever, just to keep my mind away from it. 

Finds that epilepsy can be frightening to people when they know little about it.

I must admit I told my close friends and I did actually lose friends. The first time they saw me in a seizure, they didn't want to know me any more. And I thought they were friends. So childhood was lonely, and to a certain degree adulthood as well, because of the stigma. 

Did you tell many people or you know how have you dealt with that side of things? 

Most people do know. If I feel that they're not gonna cope with it I don't say, but obviously if they are quite close friends they need to know. I don't try and hide it, there's no point. The more people that know, the less stigma there will be attached. 

And you said your family were really supportive, during that time. Have you found support in other ways, you've mentioned the family and the support group, have there been other people or other things that have been good for you? 

Friends support me. And my neighbour, she supports me tremendously. But outsiders I'd actually say no, because they would rather walk past you in the street than help. There are a few that do help but not that many because they don't know; they're frightened. Nine times out of ten they think you're drunk. 

Discusses some of the restrictions at school because of her epilepsy.

In school I sort of had an awful lot of taunts from other children, I was called spastic etc. I had to work very hard at school due to the fact of a poor memory, which is associated with epilepsy. And stress, especially when it came to senior school around exams times my seizures  really increased. I was restricted from a certain amount of activities during school. I wasn't allowed to go to Truro because of the dangers of pot-holing etc. Certain PE activities I wasn't allowed to do.

Mentions some of her concerns about safety and describes how her daughter reacted to her seizures.

Family, it's not stopped me from having a family, just precautions were set in place, safety for my daughter i.e., changing nappies, never did it on work surfaces etc., always on the floor where she couldn't be dropped; and bathing her, the littlest amount of water possible in the bath, just in case. And I always had to make sure that when she became crawling, I always had to make sure that she was in a safe place if I had to rush off for a seizure. I'm lucky in the sense that I do actually get warnings. I can imagine it not having that warning would be horrible.

...I didn't ever think [my daughter] would get used to the seizures being as I scream in my seizures. I've been told she used to scream at the same time. Now she's actually there holding my hand, although I don't remember anything, I can feel her holding my hand and when I come to, she says to me 'You all right now mummy? I'll look after you mummy, I'm brave.' And now I know she got used to them. I didn't think she ever would, but she did.