Interview EP31

Age at interview: 52

Age at diagnosis: 30

Brief Outline:

Diagnosed with epilepsy in 1980, shortly after having a stroke. Had severe uncontrolled epilepsy despite trying many different drug treatments. Had a Vagal Nerve Stimulator implanted in 2001, and has experienced a vast improvement both in seizure frequency and recovery time following a seizure. Current medication' carbamazepine retard (Tegretol Retard).

Explains that she had had a stroke and severe headaches before her first seizure.

I'd been having terrific headaches. Prior to that I'd had, in this country, I had had a stroke which had taken me off my feet for a period I would say of about 6 weeks. Slowly getting a little bit better. Been to a local hospital here and seemed to be over that. The only thing was that I had lost sight of one eye.

...So in Monaco I'd suddenly, at this period of time, started to have extremely bad headaches. These went on I think for a good 6 or 7 months.

...I would get up in the morning and my head would be terrible, and a friend who lived in the flats where I was gave me something reasonably hard to take in the way of a medication. She was in actual fact a nurse, or had been a nurse in London some years ago. But even that didn't help.

...We picked up a car and travelled to a particular place where (delete name)[my husband] was obviously going to meet somebody the following morning with a company. I got up with him. My head was even worse and I said to him ' would you mind going and getting something for my headache from reception?' So off he travels and came back. I was sitting in the bath.  He looked at me and said 'Here you are [Name]. Aspirin' he said, or something along those lines 'for you take to try and get rid of that head'. I looked at him. I screamed. The glass which he was handing over to me in the bath went from his hand and just shattered onto the floor of the bathroom and I had the most, well, I didn't realise what I was having but I had a very bad grand mal. 

Describes her disbelief at the news of her diagnosis.

And it was decided that I had got, unfortunately I was suffering with epilepsy. And from there onwards I just seemed to be in one seizure out, in, out and that went on not as things are now where they're more settled. I was lucky to get through probably about two days without a seizure. I then went to see a doctor in Norwich as I came out. Away from the hospital I went and saw a doctor for my epilepsy privately because I couldn't believe at that point that I had got this problem. '[Name] suffering with seizures? Never. Definitely not.' 

But no, my ex-husband paid for me to see somebody privately and he said 'Yes, that is what, [Name], you are suffering with'. So, fair enough, not really getting it into my brain that that was the problem. I think I was trying to live through something, was 'No, they may have said that but no that can't be'. And then I went from the situation of that one private consultation, of going to see a doctor at the [hospital] on a reasonably regular timescale.

Explains that her epilepsy was caused by a stroke.

So in your case, was it the stroke that brought on the epilepsy?

Yes, but they seemed to think what it was the stroke which was caused through having taken the birth pill.

The contraceptive pill? 

The contraceptive pill. 

Which you started taking? 

Which I started taking when, before I was married and although it was changed on one particular occasion on to another one, those were the days when I thought to myself, 'Well, there's no reason why I shouldn't be taking the birth pill. Everybody's taking the birth pill. It had got it's purposes'. But there were also situations there when, towards the end, I knew for an absolute fact if I was driving I would suddenly say to [my husband] if he was sitting beside me, 'I've got to stop'. And I would get out of the car and I would get this, getting this terrible, terrible feeling which I know was, was obviously I feel a part of a, a stroke. You know, all down the one side. And as you feel, seeing me now, I grasped my hand which is one thing which will happen, has happened over the past years, that's the first thing that goes is my hand. The feeling, those feelings are horrible feelings.

Tells how she felt after the operation and how things went after that.

So I was knocked out and came to and it was done. Bit of pain and also the fact that I felt, and I was, it was almost kept me to one side, the left side kept sort of, I couldn't move it at all. I came back here. Nothing, they didn't do anything more than put it in and I went back about a month and a little later, about a month and a half later for them to actually get it activated.  They did all the necessary business with the removing of the stitches because I've got little stitches where they'd put the vagal nerve stimulator in, and then three little lines coming up, I have a few more stitches there. But I went up I would say for them to get it activated the first time, but it was put in extremely low, almost as if I wouldn't feel anything. I did feel something but obviously after having had it done the first time, it was obvious that the, say the first fortnight, three weeks that you know, something had been done. And then just gone, you wouldn't even know it was there. And regular visits while they've had a look at it, seen whether it's necessary, asked me questions [um] 'How was I feeling?', 'Did I feel any better?'. 'How many seizures was I getting?' Each time that I have gone up they've been able to put it up a little bit higher from what has come from my mouth, 'Yes, it's better'.

Explains that she got used to having the VNS despite a few side effects.

I've got very, very used to it, extremely used to it now with the business of the magnet which is round my wrist, which if I feel any problems I can just whack it straight across where the operation in my chest has been done and that gives me a boost. In normal circumstances, providing everything is operating accordingly, it will do it by itself every 5 minutes. And it's quite interesting when people look at you and say 'Are you all right? You know, you're suddenly talking a little bit differently'.  And that's fine because that means I don't have to do what they have asked me to do every morning, just test it by using your magnet across where the little operation has been done. This is what they're asking you to do but as things have gone on and I have been put up a little bit higher, a little bit higher, it's now become if anything a tiny bit painful in my neck area, in the jaw I would say. I know things are going on there. You, you do actually know 'Yes, it's working. It's doing it's business'. 

... And because it's at it's particular height on, you know, now I can in actual fact do exactly what they said, which I said it probably would never happen, I will cough. Perhaps when I'm laying down or if I've perhaps, how I would say over-used it, with the talking I'll suddenly, hmm, cough. Or if I've been over-working. You know doing a little bit more than I should have done.  But that has been minimal, minimal.

Discusses the improvements to her life after having a VNS implanted.

That is worth every, every minute that that has, you know, has been, and that's been in over a year now. That's been worth every, every minute that, since that's been put in. But I was warned then, when they put it in, that it, there was a good, good possibility that it wouldn't work for me. I may only get 20% if I was lucky. Yes, if I was lucky, I could get 20% from it because they really did think that there was nothing they could do, they had to put that in to, with, with the mere, mere possibility that it would help. 

A 20% reduction?

Reduction from my seizures. I say to people that it's got up to 40%. People look at me and say 'No, Lesley'. People who know me, know me well, say 'No, that is easily 50%, probably not, if not 60%'. I don't know. When you live with something like this you, you're a little but unsure as to only how high you can put something like that up, but as I'm about to activate now I think to myself 'That's good, that's really good. It's there, it's doing its work and it's really, really helped me'. 

I can go places now where I wasn't able to before. I can go to a theatre. We've got a little theatre very close which only is about every, it's a little theatre for three months of the year. I can go there now you know with friends. I can enjoy it, I can laugh, I can, it's marvellous. 

Recalls her feelings of depression, and how her life changed after having surgery.

I had got to the stage where I felt 'No, I cannot go on like this'.  I don't think I used to in my earlier days. That's when I was younger, I think that was when my body could take it. With the older, as I've got this little bit older I've just felt 'No, I can't take this'. And it has been suggested on more than one occasion 'I won't take this any longer'. I'm going to give it a couple of more years and if I'm continuing on with it, I hasten to say a tablet or two which I take for my epilepsy would soon say goodbye to me. 

Luckily it didn't get to that. 

No, I'm so glad. 

So your day to day life has changed quite dramatically to how it used to be?  How were your days before compared to now? 

I was going to say very dull [um], dull if you want to call it dull, yes. Just a case of get up, I'd probably might, my day wouldn't start until mid-day because of the way unfortunately my medication was stopping me. So obviously it would be mid-day before I was all together and I was out of my flat. Mid-day if I was lucky, probably two o'clock. 

So are there any other activities that you miss?

Not now because I'm beginning to get my activities back in the respects of yes I can, as I said to you, go to the theatre, go to the cinema. They were all activities that I missed then and you're talking to me now at a point where, OK things are coming back, but coming in my direction again.