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.

It’s a case of trying to keep them all at the lowest level. Because the whole problem is that if I also, if I actually wished to conceive as well, then the problem is that if, when it comes to conceiving, the problems I have with sodium valproate are also problems such as spina bifida and other such, you know, on to the unborn child. And that’s why I need to try and keep my epilepsy drugs to a minimum. And that’s why it’s a case of trying to mix other drugs in. And that’s why we need to try and find a good balance.

…It’s just a case of getting it right now so that when we do come to planning, it’s all in line and it’s all in check and it’s all ready because it’s hard enough lowering the dosage when you’re on one drug, but when you’re on two drugs or more, it’s even harder, because obviously as one goes up the other one may go down or even up itself. So it will just get even more harder for you and for your body to control it, and to control the drugs. So the earlier you can start before you plan to conceive the better it is. So it’s just good to start now.

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 theres 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 hes just said the same as the last pregnancy, that he recommended that I stay on lamotrigine at the current dose. In fact hell probably want me to increase it as my weight increases with the pregnancy;

Anyway I fell pregnant quite quickly and our daughter was expected, it was 1974. As far as I’m aware I only had these blank moments, it didn’t do me any harm. And when she was born she was perfectly well, perfectly healthy baby.

Two years passed and we decided yes, wed like another child. And I went to see my GP. Because I remember what the consultant had said to me in [hospital].And my particular GP was on holiday so I saw another one and he said “Oh because you say about the medication, perhaps you ought to stop taking it, I think it was Epanutin (phenytoin), continue taking the Mysoline (primidone) but stop taking that one. Of course your doctor will be back in about 2 weeks time and then you make an appointment to come back and see him, and he could put everything straight.” Well I didn’t realise it but I was already 2 months pregnant and by the time I got to see the GP I was registered with, I was well and truly 3 months pregnant. Anyway he stopped the medication again and he said “Prepare yourself to have more seizures.” I don’t think I did.

Anyway our son and he was born and he was very ill at birth. He couldn’t breathe properly and he was eventually sent up to [hospital] where they operated on him.

And we decided that because of that, we were told that [anti-epileptic drug] could have been the reason that [my son’s] got these problems, but the more likely, the heart problem, perhaps the lungs could have been one of those that’s going to happen anyway, we don’t know but probably the heart problem.

When I was about 26, I got married and I had two babies, the first baby was fine. I was still having seizures all this time, about six a year. The second baby, or the second pregnancy, there seemed to be something the matter with me, I was very unwell and I had a scan and the scan proved that the baby had spina bifida and hydrocephalus. And although at the time they said it was absolutely nothing to do with the drugs I was on there was a group that was promoting folic acid at the time and that group said they felt that was the reason that this had happened to my baby, because the drugs I was on were stopping the folic acid in the body. Anyway I was, it was too late for me to have it terminated so I carried on with the pregnancy. They didn’t know whether the baby would die during pregnancy, die at birth, or maybe live for a few months. They didn’t, it was quite severe and they didn’t think that the baby would live for longer than a few months. Well that was a very, very traumatic time for me, very emotional. The baby died at birth, I had wonderful help from the doctors at the Hospital and the new Hospital, as it was then. They did all they could for me, I felt.

…But I decided I wanted a second baby, I wanted another baby so I came off the drugs. The interesting thing now when I look back is that although the medical advice was that there was nothing, my baby’s death was nothing to do with the drugs I was taking, now they don’t give that drug to women who are considering having babies. So that says to me that probably they would agree that it had something to do with it.

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.

Did you have any concerns while you were pregnant about the epilepsy and being pregnant?

In myself I felt a lot better when I were pregnant, but I were taking some iron tablets at the time when I were taking some iron tablets but I was all right. And you know, he wasn’t a bad weight when he were born. The only trouble I did have were when I had him – he were a forceps delivery. But I didn’t have no trouble at all.

Were you able to breast-feed him?

Sorry I did, I was in [hospital] six weeks before I had him because I had an attack. I did have an attack and me blood pressure were high, so, yes, but I did have an attack. But that’s, as I said earlier, if you’re doing too much, which I was doing at the time and I wasn’t eating like I should have been at the time. I noticed if I didn’t have no breakfast in the morning, when I was expecting, it didn’t do me any good.

Were you able to breast-feed?

No I wasn’t able to breast-feed him.

My husband and I have been to my consultant and had a frank discussion about epilepsy and what it means to me. But it’s one of those subjects that you feel you’ll never get quite enough information. Everything slightly contradicts everything else and, you know, yes the percentages are still terribly low of people that have problems but you still wouldn’t want that to be you. And then you worry, fine its OK within the neurological world, all the information you’ve got, but what happens if you go to an obstetrician or a gynaecologist who knows nothing about it? Chances are they will, I’m not being sort of, what’s the word, ignorant enough to believe that I’m the only person with epilepsy who’s ever had a baby because I know full well that I’m not. But it worries me the treatment that I will get from that side of the medical profession, because it’s very important. And you need a lot more scans and things like that and I don’t want to appear as this awful woman who comes in and says ‘I want a scan, I want this, I want that,’ because I want i;to be there.

Would you like more information on pregnancy?

Yes, I’d like as much information as I could get;

On anything specific or..

What I could do beforehand, you know I’m not pregnant yet – what I could do pre-conception. Whether that involves diet or exercise or, I know all of those things that are there for mothers now, and I know I should be taking, I have been taking folic acid, 5 milligrams you know, micrograms even. So I’m doing a lot but with something that important you could, I always feel you could do more;