Interview EP15

Age at interview: 46

Age at diagnosis: 18

Brief Outline:

Diagnosed with epilepsy in 1974. Epilepsy is not controlled and the possibility of neurosurgery was being considered at time of interview. Current medication' carbamazepine retard (Tegretol Retard).

Background:

Nurse; married, 4 children.

Explains that some scar tissue caused her epilepsy.

And I had a brain scan and as I said they could see some scar tissue on my brain, and so they said it wasn't necessarily hereditary. It was due to a head injury. Well I can't actually remember actually having a head injury but they said it might be even at birth. I was born a couple of months early and they said that could have been due to it sort of thing, but it wasn't necessarily a hereditary thing, it's a thing a lot of babies tend to get apparently and it was just coincidental my mum had it [epilepsy] as well. But whether or not they got that quite right sort of thing I don't know. Obviously I banged my head in the park like a lot of young people do but nothing sort of that bad, and from then on I've sort of suffered with the epilepsy. They gave me these Phenobarbitone tablets to take. I didn't have it any more, that was the only grand mal attack I had for a long time.

Explains that she occasionally has atonic seizures.

Yeah I get a warning. 

What's your warning? 

It's just a feeling, its funny, it's a peculiar feeling, it's very hard to describe.  Its um, its like a nervous thing that comes up, you don't sort of panic but it sort of comes up from your stomach and your heart floods a bit sort of thing - oh no not this thing again. 

Usually if I'm in an area, if there's a few people and I don't want to make a fool of myself' 'Sorry, I'm just going to the loo,' and I pop to the loo and sit on the loo for a minute and it passes over. And you become a little bit vacant for a while after, someone's talking to you and you say 'Sorry, what was that again?' You'll ask what they're saying but it's only for a matter of minutes, and a lot of time people don't know. But there are some like if I'm out, like yesterday I was out with my husband, I was in a shop, Ikea actually, with my husband and my son. And I could feel it happening and I thought, oh it'll pass off because some days you feel it come on but it passes off.  It just goes away some days. It come on and plonk, I went bang down on the floor and I got up straight away again. You know I think the people in the shop thought I'd tripped over or something. You know my husband's very good at camouflaging' 'Come on, get up.' And my son and that, he's very good and says 'Are you all right?'  But he doesn't make a thing of it, none of them make a big thing over it so.

Discusses various factors that trigger her seizures.

Or if I'm ill I might have it, when I've had a bad throat or something it's gone up a petit mal, it's gone up to a grand mal attack.  But touch wood on the whole they're just little ones really, nine out of ten times. 

And you said before it was just before a period or during? 

Yes just before, I mean eventually, hopefully I'm gonna stop that soon, but I still get that now sort of thing, at the same time but the middle of the month its not so bad. Its towards the, that other side of the month about the, a couple of days before its due and then a couple of times when I'm on, and then it goes sort of thing, and then it stops 

Again.

So can you kind of predict when it might happen or?

Roughly, not always because I wouldn't say it didn't happen in the middle of the month because it has done sort of thing, it does do that as well. But nine out of ten times it's usually around about the time of that you know, whether its hormones or not I'm not sure! (laughs). And of course when you're relaxed, because you're relaxed, it comes on and you let it, sort of subconsciously you let it you know. And you know I think it tends to be, at first it frightens you if you don't know what's gonna happen. 

Explains that she is wary of complementary therapies.

And have you ever tried any complementary treatments, homeopathy or anything like that?

Not really no, I'm a little bit wary of it. I'm willing to try anything if it works sort of thing, you know I wouldn't mind; but I'm a bit wary of some of these things, how safe are they you know? And will that trigger something off, you know you might take all these different things and you know, I'm a bit wary. The oil, as I say the primrose thing as I say, they say don't touch this, it has put me off them, things are a little bit you know! (laughs). 

Explains how she has not given in to her epilepsy by keeping herself busy.

I've always been very busy and as I say I've always had the children and after I was diagnosed I had my first baby, then I had another one eighteen months later and then the other two, so I've got like in the course of about seven years four children. So bringing them up, they're just almost going off my hands, the youngest is 15 and my oldest one she's 25. And I've always worked, it's been a case of having to really, you know. My husband he's a taxi driver, he drives the black cabs so it's been handy really, if I've needed him to be off because he's self-employed, he could have stayed off. But I don't think touch wood he's never had to take a day off for my health or anything. And, I think in some ways he would have done, he might have been an hour or so late going out to work, because the kids might have been not too good but on the whole I've never let it [epilepsy] stop me, and I've always made it one thing, it's not gonna stop me from doing anything. The only thing I can't do is drive and I've never wanted to drive. 

It didn't stop me doing anything and I won't, because you know the day you become sort of disabled, I suppose you're giving in. I'm not saying you're giving in to it, you've got to recognise you've got a problem, but I've cooked. Perhaps I've just been lucky, haven't had many problems that way. I've not really burnt myself or anything like that, I've never done anything like that and as soon as I get the warning you sort of back off a bit. Although you ignore it, I think subconsciously you don't ignore it, if you know what I mean. 

Explains that she does not want pity, and dislikes stereotyping of people with epilepsy.

And of course word gets round and I think my husband said 'Oh she suffers from epilepsy.' 'Oh you poor thing,' that, please that's one thing I don't like you know, because before you know it you'd be a right disabled, they'd have you put down in sort of categories, well you're in a wheelchair and oh my goodness. Or you'll get someone say 'Oh you don't look like an epileptic.'  And I'll say 'Well what does an epileptic look like for God's sake?' Thank you very much! (laughs). And I must be honest you know, when you go to sort of these places sort of thing, I know you are, people are, they are sort of branded with things, I suppose because they don't sort of see you and then when they hear about it, but in time.  I just say 'Oh well its just one of them things sort of thing.' But I haven't tried to hide it if they ask me I'll.... 

Discusses telling employers about her epilepsy shortly after starting work, and getting promoted...

What I did was, I was working in a nursing home and it was going to shut down. So I went to, I applied for one where I am now, up the road here and it's a Jewish care home. And when I went to get the job, as I say the epilepsy doesn't even bother me that bad. I got the interview, I had the interview, that was fine and I had the job. And I think I was there for about six weeks afterwards and I had just I think a slight mild attack and they said 'Are you all right?' And I said 'Yeah to be quite honest I suffer from epilepsy. I said I didn't tell you in the thing.' And they said 'Oh you're a bit naughty, you should have done.' I said 'Well I should have done but would you have taken me on?' They said 'No.' I said 'Well there you go then.' So I said 'Well do what you like.' I think we had a word with a lady, she was like the area manager who had to come from head office, she came down and she said, 'Well as long as you don't fall and hurt yourself, just sit down.'

She was very good actually and she said 'Just, obviously there's two or three of you on in the building at any one time.' She says 'And if the bell goes someone's,' because otherwise if I was being a bit vacant at the time and the fire alarm went off 'there could be a problem there,' she said. She said 'No, no problem,' it didn't matter you know, and she said you know, I think she asked and I did agree at the time, well every three years I 

go to the occupational therapist. 

Have you moved, you said it [epilepsy] hadn't affected promotion or anything like that ?

I was like a Social Worker, I was there about three years, no four years and then they asked, the position came up and they said 'Do you want to apply?' I thought well I won't get it. They said 'Well apply you never know, you work all right'. And I think I do, I mean I have me odd days! (laughs). And I applied and then I got it, and I've been there nine years now.

Had to have a forceps delivery because she had a seizure during labour.

I had four children and then as I say when I had my first daughter I got married. I didn't have any trouble with the pregnancy, just the same as I would have done. I used to get the attacks about, I don't know two or three times a month maybe, just very mild...

But when I had my second son, which was eighteen months after my first one, I had a little bit of, during the labour I had an attack and so I couldn't, so he had to have a forceps delivery sort of thing. So that wasn't too good you know, but other than that I've had no problems in the pregnancies. And then for the last sort of twenty-five years I've spent just sort of bringing the children up really, getting on with it really. 

While you were pregnant were you taking any medication then? 

Yes. Yes I stayed on the medication all the time.

What was that, the Phenobarbitone? 

The Phenobarbitone with the first two children. The second two children I think I had the Tegretol (carbamazepine), touch wood I didn't have any problems with that. I never had any blood pressures or you know any deformities or anything.