Interview EP27

Age at interview: 31

Age at diagnosis: 25

Brief Outline: Diagnosed with epilepsy in 1995. Tried a number of different drug treatments, and on average has about one seizure per year. Current medication' lamotrigine (Lamictal).

Background: Solicitor; married, one child.

Describes her husband first noticing symptoms of her epilepsy.

So, I found out I had epilepsy nearly six years ago. What happened was one Sunday evening I went to bed and the next thing my husband - who was my fianc' at the time - was shaking me and trying to wake me up, and said that something funny had happened to me. I had lost consciousness and he literally couldn't wake me up and he didn't know what to do. That was a bit frightening.

So the next day, first of all I thought it was a dream really, but he was obviously quite worried. So I went to see my GP and my GP seemed a bit concerned and said 'I'll refer you to a neurologist.' 

...So we [patient and neurologist] chatted about what had happened and then I started to feel a bit odd and I had some kind of funny turn in his office. Although I was, so that was quite fortunate, I was conscious but I remember him holding up his pen and asking me what it was. And although I couldn't, I knew it was a pen, I just couldn't say the right word. I can't remember what I said, it was quite a complicated word, neither of us could work out how I'd got to that word. So once that had passed he said 'I think you've just had another seizure'. And he told me that he was certain I had epilepsy and that he wanted me to go and have an MRI scan to see if there was anything that was causing it. And that was basically all that happened.   

Describes what happens during and after a seizure.

And what actually happens when you have a seizure?   

Well sometimes it's just my speech that gets distorted, a bit like when I was in the neurologist's office.  Because thinking back, before I had the first episode that made me go to the GP, I had had a couple of times when I was talking on the telephone to people and the wrong words came out. And at one point the person on the other end of the phone - he knew me quite well - said 'You're talking gobbledygook' basically. And I think if he hadn't known me he might have thought I was drunk or something, it was that sort of, sort of slurred speech and not quite the right words. And so sometimes my speech gets distorted.  Sometimes I get a bit tongue-tied, and I'm aware of that; sometimes I just start to feel like I'm gonna faint or pass out. And sometimes I can stop it there, but after that I don't really know what happens but I think I just fall on the floor or fall, if I was sitting in the chair I might flop back. And then I wake up.

And can you hear what's going on around you?

No, I can't remember anything about it

And are your eyes open or closed? 

I think they are closed from what people have said.

And when you come round you've got a thumping headache? 

Awful, awful headache and I usually feel sick and I'm frightened. Because I know what's happened.

Recalls that having an MRI was painless and all part of the process.

Yeah it was, I had to take all my clothes off apart from underwear but I had to take off my bra because it had metal bits in it and that would have interfered with the scanner, I remember that, and having to wear one of those hospital gowns (laughs). And then just lying down and being taken into a white tunnel and having my head sort of fixed between these cushion things so that I couldn't move very much because you need to be still for the scan. And I remember it being very noisy like a pneumatic drill in my ears. But you could talk to the person that was doing the scan and they reassured you. It wouldn't be that nice if you were claustrophobic but it was OK. It was just part of the process for me, I wasn't upset by it at all.

Describes her feelings of relief as well as depression and isolation.

I was sort of excited really to have found out that there was a name for what had happened. And I thought oh epilepsy, that's not too bad. And I'm gonna have a scan, that's fine, and they won't find anything and you know OK, I'll carry on. I was probably a bit shocked but I didn't feel too bad.

No, I was seeing him [consultant] on the NHS after the first appointment, every six months or so, and every appointment I went to I'd get very, very upset. 

Why was that? 

Just because of the isolation and the, because I was depressed about it. And I felt he wasn't really helping. He just said 'Take the medication and everything will be OK.' 

I think my, my concerns lessened as time went on but I did talk to people about it. And I, at one stage I felt that I wanted just to tell everyone I knew that I had epilepsy. And I think that that was because I was hoping I might find someone who'd say 'Oh yes so have I.'  But I didn't ever find anyone, so then I stopped telling everyone. But people that I work with know. Its not a secret but I did used to sort of go around telling, I would have told someone I was sitting next to on the bus you know. But now I just tell people that need to know. Because sometimes people will say 'Oh well why don't you drive?  And I can explain its because I have epilepsy.

Just that perhaps at the beginning it would have been useful to know how, it would have been useful to speak to or have contact with people who were further on from the diagnosis to know how they'd got to where they were at, and how they were feeling then. Because at the time it was just a sort of bleak future and I couldn't imagine feeling better. If someone had said 'Oh well that happened to me and actually three years on its not as bad' I would have felt better. So that would have been helpful. 
 

Recalls the hand tremors she had with one drug and poor concentration with another.

And then one evening at work I had another seizure, and I got admitted to hospital. And then they started me on a new drug which was Epilim. 

And that was all right. But just before I was about to see the neurologist, about two weeks after coming out of hospital to see how I was getting on, I noticed I had a tremor. My hands were going (shakes her hands). And I thought OK it wasn't that bad, I can cope with that. But as soon as the neurologist saw, I thought I might have imagined it, so when I showed him straight away he said 'Oh no, you can't take Epilim'. So he stopped that and then he put me on lamotrigine. And that's what I take now. 

So you started taking the Tegretol straight away? Did you feel any side-effects? 

No, not initially but after about eighteen months I was working as a trainee solicitor and I felt that I couldn't concentrate very well, and that my memory wasn't very good. And I found it quite frustrating. And I thought that was to do with the Tegretol and I raised that with the neurologist. And in the end he did say that it could possibly be  connected but he still wanted me to take it. 

She now uses public transport for work because she cannot drive.

I take the train - and its fine. And you can work on the train.  Its quite good because I know I can't drive, and everyone else in my team knows I can't drive them either, so I just get on with it really. But that said because I live in Birmingham and there's a good infrastructure with good buses and good trains, it was a bit different before we moved here when I was living in Somerset and the buses stopped at 5 in the evening, and that was that really. So'that's part of the reason why we chose somewhere like Birmingham. Because although I have had my driving license back on and off, we've got one car, we're not going to buy an extra car for me, I'm quite happy to use public transport. 

Because you just get used to it. 

You do get used to it. I mean when you go to parties you can be the one who gets to have a glass of wine - always! (laughs).  Because you can't drive (laughs). 

Would have liked more guidance and information on contraception and anti-epileptic drugs.

I actually would have liked more information initially on using the contraceptive pill and epilepsy medication - because the neurologist who originally diagnosed me forgot to mention that the fact that I was on the pill had implications, and that I should be on a higher dose. And it was only that I found out about that that the dose was increased. So potentially I could have become pregnant at a time which wouldn't have suited me from where I was in my career and also wouldn't have suited me because I was depressed and isolated. I was not happy and it wouldn't have been a very positive experience so I'm glad that didn't happen. I would have liked more information on that.

How did you find out about the pill and?

Just from reading an article, by chance really, and then I thought oh dear that's me. 

So you went back to your neurologist or just to your ?

Just to my GP and said 'I think I should be on a higher dose pill,' which he sorted out! (laughs). I think that's terrible actually that that happened.

Discusses her concerns about pregnancy and the possible risks to the baby.

Well I was worried that the baby might have an abnormality. And I was really worried about the angioma in my brain and that when I was pushing during labour it might burst or something. And I asked about that the whole, all, the whole period running up to becoming pregnant and throughout the pregnancy, and I didn't get an answer. So at the end when I actually had the baby, I only managed four pushes, said 'Oh I feel a bit faint,' and they stopped me. And I'm quite disappointed about that. The next time I'm going to push for an answer because I'd been told there's no risk 'You know we really think it would be OK to have a normal delivery,' I'd rather have tried for a bit longer.   

So what, what happened then?

I had a forceps delivery.

So how did you feel throughout your pregnancy, were you OK?

I was fine. I managed just to put it to the back of my mind and I didn't worry about it too much, and I really, really enjoyed being pregnant.  

I've already started asking about what we would do if I wanted to have another baby. And basically he's just said the same as the last pregnancy, that he recommended that I stay on lamotrigine at the current dose. In fact he'll probably want me to increase it as my weight increases with the pregnancy.