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Epilepsy

Women and epilepsy

Women with epilepsy discussed various issues that were important to them, including hormonal changes, contraception, conception and pregnancy.

Some women find that seizures occur just before their period and during it. Most of these women find that they might have seizures at any time, but they are more common around the time of menstruation (see 'Trigger factors for epilepsy').

On average women's periods stop in their early fifties and they can then no longer become pregnant (the menopause). Epilepsy can develop at any stage of life and some women might develop epilepsy at this time coincidentally. Some women who have had seizures for many years may find that these improve or disappear about then.

Contraception concerned some women, particularly as some anti-epileptic drugs can speed up the metabolism of the contraceptive pill and reduce its effectiveness. Some women explained that they were on a higher dose of the contraceptive pill to compensate for this effect of their anti-epileptic medication. One woman was not told about this, and said she would have liked more information on contraception and anti-epileptic drugs.

 

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

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Age at interview: 31
Sex: Female
Age at diagnosis: 25
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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.

Conception and pregnancy were also considered important issues for many women with active epilepsy. Several women we interviewed had discussed their concerns about conception, pregnancy and anti-epileptic medications with their doctors. A few women mentioned changing drug dosages so that they could be on the lowest effective dose well before they even thought about conceiving.

 

Explains that she wants to be on the lowest effective drug dose well before she is ready to...

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Age at interview: 21
Sex: Female
Age at diagnosis: 11
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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. 

Women with active epilepsy need to continue taking their anti-epileptic medication during pregnancy. Several women explained how drugs or dosages were changed before conception or early into the pregnancy. They also discussed their worries about pregnancy and possible risks to the baby.

 

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

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Age at interview: 31
Sex: Female
Age at diagnosis: 25
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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.  

One woman noted that she was advised to stop taking medication before conception. She said that her first pregnancy was fine, but the second involved problems which might have been caused by her drugs. Another explained how her second baby, who was born with spina bifida and hydrocephalus, died soon after birth. She also discussed her feelings about the effects of anti-epileptic drugs on her pregnancy.

 

She had problems with her second child which might have been caused by her drugs.

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Age at interview: 49
Sex: Female
Age at diagnosis: 14
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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, we'd 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. 

 

During pregnancy her baby was found to have health problems and died at birth, she discusses whether it was caused by her anti-epileptic drugs.

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Age at interview: 48
Sex: Female
Age at diagnosis: 10
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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. 
 

Some women talked about having a forceps delivery. One woman had a forceps delivery with her second child because she'd had a seizure. Another recalled problems afterwards because of a seizure and high blood pressure.

 

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

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Age at interview: 46
Sex: Female
Age at diagnosis: 18
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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. 

 

Discusses some of the problems she had with her pregnancy because of a seizure and high blood...

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Age at interview: 51
Sex: Female
Age at diagnosis: 1
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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. 

Most women with epilepsy do not have more seizures during pregnancy than before. Breastfeeding is encouraged for women with epilepsy, as it is for mothers generally.

Several women worried about their epilepsy and future pregnancy. One explained that she would like more information on looking after herself before conception and during pregnancy. Another was concerned about anti-epileptic drugs and pregnancy.

 

Explains that she would like more information about pregnancy for women with epilepsy.

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Age at interview: 30
Sex: Female
Age at diagnosis: 17
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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 it 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. 

 
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Voices her concerns about drugs and pregnancy, and the need for more information.

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Age at interview: 28
Sex: Female
Age at diagnosis: 19
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Well the only thing I'd say that it really affects is whether or not you know I go ahead and have children because there's so many things to think about' with the defects from drugs, you know that you can have or that have been documented; with managing an incredible body change like pregnancy throughout it with the drugs and whether or not the way that your body changes will affect the way that the drugs work for you, and whether your drugs still work for you when you're in that new state of being. 

So that would be one long term thing that I'd have to think really hard and get a lot of advice about if we were gonna go ahead with it. Because it's a really serious decision to make, there's a lot that goes into making that kind of decision and obviously because both of us have epilepsy there's, you know, whether or not a child is more likely to have it and whether or not we would want that for a child.            

And have you read a lot about this on the Internet?                      

Yeah I've read a lot about it and I've asked a lot of questions and the hospital's given me a lot of information. And basically the chorus out there on the Internet from most women is that we need better treatment for women who are pregnant. We need a better drug, we need to feel safe in making these decisions. And I've read a lot of women's experiences about how they've been on these drugs and this is what they did and they ended up with a normal healthy child and that's all, you know that's all worked out for the best. But you know there's a lot to think about and I think there's a lot of women out there who don't feel like they're getting the support from drug companies or their doctors or things like that, or getting the right kind of counselling. There was a definitely a chorus of dissatisfaction in everything that I read, yeah.   

Last reviewed May 2016.
Last updated March 2014.

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