Interview EP17

Age at interview: 54

Age at diagnosis: 42

Brief Outline: Carer (aged 48), for her husband (aged 54), who was diagnosed with epilepsy in 1989, aged 42. Tried several different drug treatments. Epilepsy is poorly controlled. Current medication' carbamazepine (Tegretol), sodium valproate (Epilim) and levetiracetam (Keppra).

Background: Carer is a pharmacy assistant; married, 2 children.

Describes her husband's misery when he first saw his seizures on video.

But then obviously this [epilepsy] come along and I sort of, I had to sort of say to him well there's something not right about you. You need to go to the hospital, I think its this and of course he didn't want to believe it; I didn't want to believe it, but from the outside I could see what was happening. So he is very bitter about it, the fact that he's had to give up so much, mainly the driving. In fact he had to, straight away, hand in his licence which you know you're told at the time you don't have to but he was advised to. 

You said that you video recorded [husband] and then you showed [him], what did he think?  

He was just absolutely gob smacked. He just, he just sat there with tears rolling down his face with just, he was just so embarrassed. And he, 'That's not me,' you know, although he knew it was 'me'. And he just sort of felt so much anger. He just felt really, you know, sorry for me' 'How have you put up with me for all these years with this?' 

Discusses some of her concerns as a carer.

I've gotta say I kept a lot from him. I never told him what he done. I would say for instance like 'You've had a seizure.' He would say 'Oh what happened?' And I would play it down. I wouldn't tell him all what had happened, fear of embarrassing him for a start, so I kept an awful lot back. 

And how many children have you got?

I've got two sons. 

And have they been you know over the years have they learnt a lot more about epilepsy?

Again I kept a lot from them. It was only, I think last year my eldest son who is now 26, he actually saw [my husband] having a seizure sitting in that chair down there. And he, I could see it happening, so I asked my daughter-in-law to take the grandchildren out and [my son] was sat there and at the end he said 'Mum, I didn't realise it was as bad. How, how on earth have you coped?' You do, you don't go round telling people what you're going through, you do keep a lot, a lot to yourself. And people say to me 'You should tell your children,' but why should you, they've got their lives to lead, they don't really want to know. 

Could you talk about your own feelings with your friend? 

Yes, yes she, like you know she was about the only one I could talk to because nobody else would understand, because if somebody's not seen somebody having a seizure they would think well what are you on about. And living with it even is totally different to someone seeing a seizure, living with the personality change is very hard, I'd say none of its easy. But you have to be strong for them you know.

Like all through, because [my husband] has always had a lot of illness, I've always had to be strong. There's no way I can go down, because he sticks under me if you know what I mean. He totally depends, and he has said this himself, he totally depends on me as his memory, as everything really, because the memory side of things has totally gone, over the years it has done so much damage.       

Describes how different anti-epileptic drugs were affecting her husband.

I just, I had, when we were at  [the hospital] and we were seeing one of the consultants, things were getting far worse with [my husband] who was having seizures three or four times a week, a night, and that was three or four seizures at a time, coming out of one, going in to another.

All at night? 

All at night. And some during the day, it was getting progressively worse that he was having them during the day and this was on, he was on Tegretol, Epilim and basically he tried most of the drugs and they were still not controlling him. And his behaviour problems were getting far worse, he was getting worse. In fact to the stage that I was embarrassed to go anywhere with him 'cause the attitude he had to people and things, you know it wasn't him, it was a complete change of personality. A person that I've got to say I was embarrassed to be with because of how he was reacting. 

'So now they've decided, on top of all his other medications, to put him on Keppra which as I understand has only been licensed for about a year. And they're now monitoring him on that. So he has now been on that for about nine months I suppose.

But he's still going, it is about six weeks between so that's better than it was. But he did say the next visit which, we go up again in September, he was going to try and cut down maybe some of the Epilim or Tegretol, whichever, to see if he can up the Keppra and take out some of the other ones because obviously the Keppra is suiting him.

Discusses wanting the consultant to make treatment decisions and problems with changing consultants.

So when it got to that stage I said to the Professor at [the hospital] 'Look,' 'cause we used to go up there and he used to say 'Right, you know, I don't wanna change your medication because obviously you don't want anymore seizures, I don't want to do this.' And his words used to be 'What do you think I should do?' And you know [my husband] used to sit there and say 'Well I'm sorry but you're the doctor, you tell me, I don't know. All I know is I don't want to be feeling like this.'

And so I said to the doctor, I said 'Look I have been told about Professor [name], is there any possibility that we can get to see him. And he was a little bit put out that I'd asked and I said 'Well its not reflecting on what you've done for him but I just, but I just feel that I want a second opinion basically to see if we can help [my husband].' And he said 'Well its not up to me, its up to your GP,' he said 'I'll write a letter to your GP,' which he did. I mean he wrote a lovely letter saying that you know he was unable to control [husband] and would the Professor have a look into the situation. And then obviously the doctor, my local GP she, because of her budget she was a little bit 'Aw I don't know,' you know and she said it should come from the hospital. And because she was in this area, in the Kent area, she said that she couldn't put us to another hospital in the London area, the London hospital had to put in for it.

Anyway this was going backwards and forwards, I was ringing the hospital, I was ringing the surgery and in the end I went down to my local doctor and I said 'Well look someone has got to do it and it's [husband] we're talking about at the moment.'  So she was very good, she wrote to the Kent Authority and asked if they would give permission for her to refer him. And they said 'Yes,' so that's when we got referral to Professor X, but that wasn't easy, that was a battle.

How long did this all take?

Oh I'd say a good six months maybe more, of backwards and forwards and not giving up. And this is what I've got to say you can't give up, you've got to keep on pushing hospitals and doctors, do everything you can, your own research, your own evidence.

Explains how she monitored her husband's drugs, and discusses being involved in making treatment...

And the last visit we went to see Professor X , he said 'Right,' to up the dose. Because originally they did give him a plan right for two weeks, take 250 [mg] then go up to 1 twice a day and go, but I noticed that when we started to up the medication he [husband] was too zombified. So I said to him 'Well lets do it in our own stages. Go on it, up it for however long, see how long it takes you to have a seizure in that time. When you have a seizure we'll then up it.' And he did go quite a few weeks between seizures, it was about six weeks between seizures. So then we upped them but we found that when we did that he was very zombified. And so I said right 'Go back to the initial dose that you was OK at, and if it means only six weeks in between [seizures] that's better than what you was having.'

So then he, like we went back to see Professor X and he suggested then that because it had been quite a while in his system, that we should try and up it again which, we're in the stages where he has upped it, but he's still a little bit zombified. So we're gonna give it a month and if he's too zombified we'll go back, take the day time dose out and go back to it just being taking it morning and evening. 

With the epilepsy drugs at the moment do you feel you have the choice, you have as much choice as you can or...?

Well you still tend to listen to what the GPs have to tell you, you've still got to go along with these guidelines. I wouldn't sort of say 'Now you stop taking Epilim because you've got to have all the toxin levels done and all that so we wouldn't do that.  But when they put you on to another drug clearly you can see if one is making you into a zombie, so you don't carry on upping it and upping it if you are gonna be like a zombie. You just stop and you ring the hospital and say 'Right', in many cases we say 'Right we've stopped this and gone back to this,' and they'll say 'yeah that's the right way to go. 'But you don't do anything that's going to be life threatening and silly you know.