Here young people talk about their experiences of different contraceptive methods and their thoughts on and experiences of fertility, pregnancy and having children.
Contraception
For women, there are interactions between some contraceptive methods and certain AEDs, whereas for men, their epilepsy medication does not interfere with contraception. Some methods of contraception are less effective when a woman is taking particular types of AED. However, there are many safe and effective contraceptive methods available for women with epilepsy (see the resources section for links to more information).
Most young women we spoke with who used a form of contraception were on the contraceptive pill. Those who were on the pill as well as particular types of AEDs said that they couldn't rely only on the pill but had to use other methods to avoid pregnancy, usually condoms. This is because 'enzyme-inducing' AEDs (such as Tegretol; carbamazepine, Topamax; topiramate, Trileptal; oxcabazepine) can reduce the effectiveness of the pill. Lamotrigine can also interfere with the pill but the contraceptive pill may also reduce the effectiveness of lamotrigine.
Many women said that they and their boyfriends were fine about using condoms. One woman summed it up as' 'condoms are better than getting pregnant'.
Kirsty and her boyfriend are using condoms until her seizures are better controlled because the...
Kirsty and her boyfriend are using condoms until her seizures are better controlled because the...
Age at interview: 20
Sex: Female
Age at diagnosis: 19
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At the moment I'm not allowed to have any contraception, apart from condoms because they said basically we can't give you anything until it's controlled. Because like my epilepsy is quite bad at the moment and they are waiting until it's controlled because of the contraceptive pill will interfere with my lamotrigine so I have to wait [laughs].
And how do you feel about that?
It's not a big problem, really. He understands anyway. He's really good with stuff like that so it's not a problem at all. It's okay.
Charli's on lamotrigine and the combined contraceptive pill. Her doctor suggested increasing the...
Charli's on lamotrigine and the combined contraceptive pill. Her doctor suggested increasing the...
Age at interview: 23
Sex: Female
Age at diagnosis: 18
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The doctor did give me a list of all these things that I can and cannot have. There's certain things I can't have. I can't have the patch because the lamotrigine can affect the effectiveness of it. I was gonna go up to a stronger pill, I'm on the combined pill, Microgynon 30 which has got 30 milligrams of the drug in, she was gonna put me up to fifty, so it was a slightly stronger dose, but because there's not much tests been done on this, I mean there's been a few but not that much research has been done into it, so she said, 'To be honest I wouldn't worry about it.' Because I was worried about putting up my dosage of, up to 50 milligrams I was thinking, 'oh no maybe I might get spotty, and might put on weight', 'cos with the pill obviously those are the side-effects. And if I upped the dose, then I could have more, increased chance of getting fat and I didn't wanna [laughs] put on any weight or get spotty. So I'm glad that I could stay the same 'cos I've been on it for about five years now and within the last three years nothing's happened so, ben alright. I've been on that pill for like the last five years and for the last three years I haven't fallen pregnant and I've been on that pill, I've been taking my epilepsy medication as well as, like you know [laughs], and I haven't become pregnant so it must be working. I don't think there's any chance, any need to increase it. But there was certain ones I can't take being on that medication, but that's it.
Bex is on two AEDs which could cause birth defects in babies. She says it's important, but also...
Bex is on two AEDs which could cause birth defects in babies. She says it's important, but also...
Age at interview: 20
Sex: Female
Age at diagnosis: 13
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It is quite an issue with the medication because the two drugs I am on can cause things like spina bifida and cleft lip. So yeah, that can be quite an issue. It is always very difficult taking medication for that reason and certain drugs you know, sometimes you are told they can cause infertility and things, but I think it is important not to worry too much about things. But you know you do have to be wise and watch what contraception you're on and sometimes the pill doesn't always work with the medication so you have to check that out and sometimes it can be a struggle sometimes because you always gotta look into things and sometimes you really wish that you didn't need to. But that is something you have to do. But the drugs that I am on at the moment are very very dangerous, but if yeah if I was to have a child then they would take me off, take me off them so yeah.
Other contraceptive methods that women used were Depo contraceptive injections, the coil (also known as Intrauterine devices (IUD’s) or Intrauterine systems (IUS’s or Mirena coil)) and contraceptive implants. The injections and the coil are not affected by any AEDs, whereas the implant can be.
Rachael had bad experiences with the pill and the Depo injections but says the coil is the 'best...
Rachael had bad experiences with the pill and the Depo injections but says the coil is the 'best...
Age at interview: 25
Sex: Female
Age at diagnosis: 21
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I had a long term boyfriend at the time. We were using condoms, and so but I got a, I didn't want to go onto the pill, because I seem to have this thing for forgetting to take medications and also as well I'd been on the pill in the past and it's made me foul. So it was not long like, I think it was like I said two months before that we'd been together and we were still using condoms. And then I did started on Epilim (sodium valproate), and they said you know there's a bit of a worry with the pill and Epilim. And I was like right, okay. So you need to consider other things. I went to the nurse and like had a Depo injection which was horrible like. I think you just need to sort of like see something that helps for you, and come to think of it, I think when I was actually on a Depo injection it did sort of make things a little bit worse. I don't know whether that there is, I don't really want to say there oh, you know there is a link so you know don't go getting Depo injection, injection you know if you're epileptic. 'Cos that's different for anybody. I was just having a lot of fits at the time anyway. But it just didn't work for me; just totally made me put on weight as well which is something like you know when you're feeling low you don't want to put on weight.
We tried different things and, I went to a like when I went to university to do my final year, I went to speak to the practice nurse there and she was fantastic and well we were going through the different things like what's the best, what could be the best thing for me you know, I'm in a long term relationship so there's no need, there's no worry of sort of like you know you don't really need to used condoms but you know it's (unclear word) if you do but you know something a bit more long term would be better, so we decided, I've got the coil now and that's, I've had that in for about two and a half years now. It's a non hormonal coil, it makes your periods a bit more heavier but well what I've found anyway. it's been the best thing since sliced bread [laughs]. 'Cos you don't have to take medicine, it's there, it can stay in, and it's non hormonal and it's just to me it's sort of like the best, it's definitely the best way. You've just gotta find out what's best for I reckon.
So you're happy with that?
Yeah, yes I'm dead happy with that.
Many women we spoke with had been given information about contraception and AEDs by their doctors but several also said they had researched and read about it themselves from reliable sources, for example Epilepsy Action and Epilepsy Society websites. They said it was important to take the initiative to ask the doctor about contraception if the doctor hadn't brought it up first. One woman had been given conflicting information about her AEDs and contraceptive choices by her neurologist and the epilepsy nurse, and found this really confusing. Another was on lamotrigine and the pill for years and nobody had told her she might get pregnant without extra contraceptive precautions.
Fertility
Certain AEDs may reduce sperm production in some men, which could reduce their fertility. Some women with epilepsy may have irregular periods or a condition called polycystic ovary syndrome. These can be side effects of some AEDs and are treatable, but can make becoming pregnant more difficult.
Nick is slightly worried about the effect of epilepsy medication on his fertility.
Nick is slightly worried about the effect of epilepsy medication on his fertility.
Age at interview: 21
Sex: Male
Age at diagnosis: 15
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Well, to be honest, it does worry me about I mean how my epilepsy medication might affect me. The fact is, I mean I think on TV a while ago they were talking about how beer and cigarettes and diet can all affect your fertility number count, all that sort of thing, I suppose if I knew my medication affected that, that might worry me a little bit. But again, that's not something I can, I can't stop taking my medication, I would never stop taking my medication. So it's not something that I could worry about in that respect.
Pregnancy
Many young people we talked with said they wanted to have children one day in the future. Some said that they would think it through carefully with their partner and discuss it with their doctor. Many said that they were concerned about the effects their epilepsy medication, or having a seizure during pregnancy, could have on the baby, or how they would cope with labour.
Carole has always wanted to have children. She is concerned about the possible effects of her...
Carole has always wanted to have children. She is concerned about the possible effects of her...
Age at interview: 20
Sex: Female
Age at diagnosis: 18
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I've always, I mean I don't know other women, I don't know whether it's either you know or you don't know really, but I've always known that I wanted children. Not at that point, but I do want them later on in life and it was definitely the concern of. You hear certain aspects of, well it's also common sense I mean, if [laughs], being crude if you think about it as an oven if you're sort of baking a cake in a shaking oven it's not gonna work very well. So it's, it was at the very forefront of mind so I was always wondering about aspects of autism or maybe deformities physically in a baby. Then it was a very big fact of would I actually have children, if there was chances that I would have that, and being female I felt that I had to deal with that at a very young age. Like you shouldn't have to think about stuff like that because I've always been interested in it. I did get told that I can't remember the exact statistic that, but I did get told that well being epileptic I was at higher risk of having an autistic child, but only I think it was only slightly, but that still brought concern to me. And there was also the fact of have I got what is it, forgotten the word, sorry, you get it through families, hereditary, that's it, so have I got hereditary epilepsy as well. I mean, the only other person in my family with epilepsy was my father's sister, and that wasn't due to anything hereditary, but she had learning difficulties, which she had it as well, and died at a young age so I never actually met her, but that was the only other person.
There are AEDs which are not usually prescribed for pregnant women or those trying to get pregnant because they can affect the baby's growth and development. Discussing plans about pregnancy with a neurologist or epilepsy nurse is recommended well in advance. It is important never to suddenly stop taking AEDs but to discuss this first with a neurologist or GP.
Several women we spoke with were taking folic acid, even if they were not planning to get pregnant, in case of an unplanned pregnancy. Folic Acid reduces the risk of neural tube defects in a baby. All women planning a pregnancy are recommended to take Folic Acid and women with epilepsy are recommended a higher dose because some AEDs add to the risk of neural tube defects.
We also spoke with a couple of women who had been pregnant and had children. Both had healthy babies but their experiences of pregnancy had been very different. One woman described her pregnancy as 'a constant worry' and she also had several seizures during her pregnancy and also had a bad fall with a seizure. Another said she had no concerns during pregnancy and felt really well the whole time. Both women said they had received excellent NHS health care during their pregnancies.
When Donna and her husband started to plan for pregnancy, Donna had to gradually come off Epilim ...
When Donna and her husband started to plan for pregnancy, Donna had to gradually come off Epilim ...
Age at interview: 28
Sex: Female
Age at diagnosis: 3
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I always said that I wanted children, I only wanted one, and my epilepsy was not gonna stop me doing it, and I did that. It stopped me from doing so many things, and I always said it's not gonna stop me doing the most natural thing in the world, and that's being a mum. So I was looked after really well by my GP. Went, trotted off, went to the doctors, they told me that I had to come off my Epilim (sodium valproate), that's the tablet I was taking at the time, 'cos it causes spina bifida in babies. I had to wait I think it was probably a year at least before I could start trying for her, because time my contraception had come out of my system and time the Epilim had come out of my system.
Donna fell down the stairs when she had a seizure during her pregnancy but the baby was fine.
Donna fell down the stairs when she had a seizure during her pregnancy but the baby was fine.
Age at interview: 28
Sex: Female
Age at diagnosis: 3
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I can't really specifically remember having the fit, but at the time I lived in a maisonette which is like a flat with stairs. I remember obviously not feeling too good, and then the next thing I knew I was at the bottom of the stairs and my husband was saying, 'Oh look we're going to the hospital to make sure you're alright, make sure the baby's alright.' Obviously I was worried, I think I remember panicking and I mean for a while I was a bit, 'Oh I'll be alright, I'll be alright.' You know like you are as you're coming out of a fit, it takes a while to sort of realise what's happened. But I remember I think once I get up to the hospital and sort of recover from the seizure, I obviously I very worried. I was thinking, 'God I hope everything's okay. Hope...' and obviously they give, did a scan and they said that she'd not moved. The baby'd not moved. My husband always says, 'Well she's a hard, she's a little hard nut isn't she?' She didn't, the baby had not moved from the position from when I'd had a scan three weeks ago. So obviously you know the bump couldn't have been that bad. Maybe was for me but not for her to move.
Donna says her pregnancy was a constant worry and she had many seizures. She was well cared for...
Donna says her pregnancy was a constant worry and she had many seizures. She was well cared for...
Age at interview: 28
Sex: Female
Age at diagnosis: 3
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There was nothing nice about being pregnant at all for me cos it was just a worry, because of the epilepsy. Although my dad says he can remember when I was pregnant I had less seizures. I can't remember, but my dad said you actually had less seizures. We talked about it a few weeks ago, and he said that you did actually, so whether that's a hormone thing or, he said I actually had less seizures. Although when I was six months pregnant I fell down some stairs, had a fit, fell down some stairs. I didn't know, again I was oblivious to it all. My husband said, 'Come on, we're going to the hospital.' But she was fine anyway. She bounced out a healthy 8lbs 10. So yes she was absolutely fine, but that was quite difficult. But I did it. I was really well, I was really well looked after by you know my hospital, I had a lot of scans, you know, they was really good, I can't fault the national health service there, they really looked after me really well. So I think anybody that was thinking about having a child, it's not awful, you've just got to go and get the right help, and say, this is what I want to do, you know, then they'll guide you, well I was lucky I was you know guided in the right way, and I got all the right help.
But it was such a worry, it was such a worry, oh it was a horrible nine months, it was such a worry. I just wanted it to be over. Not the pregnancy itself, but the epilepsy with the pregnancy. Then when I fell down the stairs when I was six months pregnant that was a bit of a. but like I say she was fine, healthy. I wanted a girl cos I knew I don't want any more, and I had a girl so, that was great. So it's not all bad.
Charli enjoyed being pregnant and felt really healthy.
Charli enjoyed being pregnant and felt really healthy.
Age at interview: 23
Sex: Female
Age at diagnosis: 18
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My epilepsy really wasn't a big problem when I was pregnant, really, really wasn't. I didn't even think about it, I was just so happy that I was pregnant, it never really came into it, I don't think at the time when I was pregnant I was on my lamotrigine monotherapy. I wasn't taking any medication at all for my epilepsy because, well I fell pregnant in 2002 and had my son in 2003, basically after I had been diagnosed that I fell pregnant. I think with all the kafuffle of being pregnant and everything else I didn't take my medication. I was pretty bad in the beginning actually I didn't think I needed it, until I had like a couple of major seizures. But yeah it was fine, I didn't have to take any precautions, like I wasn't told to take folic acid because it wasn't really mentioned then about my epilepsy and my pregnancy, do you know what I mean.
But it wasn't really a big thing, because it had just sort of been newly diagnosed and I hadn't had the fit, a fit for ages before I fell pregnant. But like I said now if I was to get pregnant again I've been advised all different things and I'm not looking to have another baby for a little while, don't worry about that [laughs]. But yeah I didn't really think about the implications of having a child and having epilepsy, because my fits were so irregular and not very frequent. I didn't really think it'd have a major impact at all and we was fine.
No I was okay actually during my pregnancy I didn't have morning sickness, I worked up until I was about eight months pregnant in the bank still. I enjoyed being pregnant, I bloomed when I was pregnant I did it really lovely, my nails were lovely and strong, my hair, I had a good time being pregnant actually [laughs]. Yeah but it wasn't affected by my epilepsy at all, and that didn't affect my epilepsy at all so, yeah. If anything I was probably more healthy during my pregnancy, I looked better, felt better, more relaxed and everything.
See more experiences of pregnancy and women who have epilepsy.
Life with a baby or children can be difficult if the parent is having a lot of seizures or feeling tired and fatigued from the side effects of medication. Both women we spoke with had a lot of help from their families.
Donna was 'over the moon' when she had a healthy baby. She felt she missed out on a lot with her...
Donna was 'over the moon' when she had a healthy baby. She felt she missed out on a lot with her...
Age at interview: 28
Sex: Female
Age at diagnosis: 3
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I was over the moon. I didn't know, I wanted to know whether I was having a boy or a girl, like a lot of people do, but 'cos she was laid in funny positions all the way through I never knew. So she was awkward from the start. Just like her mum, and then when, when they said oh I'd had a girl I was so happy, I really was, I thought, 'Oh it's all been worth it.' You know all the worrying all the way through and falling down the stairs at six months pregnant, but it was very difficult after as well. Because I've always been, somebody who has needed my sleep and as you know you don't get sleep when you've got babies.
So getting up and down in the night was difficult. Because again because of my tablets I've always been a good sleeper, I've always been ready for bed at a reasonable time. So that was quite difficult afterwards getting up and down in the night. I mean my husband was good. For nine weeks I was that sore anyway cos of the caesarean but my husband was really good, he you know he did a lot of the getting up and down, but that was difficult as well. I mean I feel that really [daughter's name] has only, she's just turned four, and she's only really getting, just getting my full attention now.
I feel that again the epilepsy sort of took the first, the most important years of her life away from me because I couldn't be as responsible with her as what another mother could. But now I've got my chance to make that up to her, so I mean I do feel that the epilepsy's took them years away because again everything was focussed around my health and my illness. But again it can only be the better for both of us. I mean I took her, about a fortnight ago I took her on a bus on my own in town, and we had lunch in a pub. She thought it was absolutely fantastic, 'I've been to the pub dad I've had, no it was breakfast actually, and I've had breakfast with mummy', but things like that I could never do before.
Because of the tablets I'm tired. So that means I ain't got no patience. And you need patience with children. Having the epilepsy meant that I couldn't take responsibility for her, because I couldn't take responsibility for myself so how could I take responsibility for somebody else. So that was a big issue in itself, not being able to take her to the park, again it goes back just to doing the normal things that parent's should be able to do. Taking her to the park to feed the ducks, taking her to the shops, you know yeah I can do all them things now, but when she was a baby I couldn't. Not on my own. Because I would be worried. You know I'd worry about just going to. Like I say, I haven't being going to the doctor's without having a fit, you know it's just so, epilepsy is very unpredictable, you know you can be all right one minute and then you're on the floor the next. And that's where again you live your life on the knife edge, so I found it difficult to be relaxed I suppose. I'm more relaxed now. But that took a while to just be relaxed. You're gonna be okay you can walk out the door and just do normal things so like now when I do things with [daughter's name] it's great. Because I can just do them and I can just do normal things you know like taking her in town and you know taking her to, I'd be no good before taking her to the park because if I had a fit I'd be in the lake you know. And where, where would she be'So my husband did a lot really the first two three years. You know he sort of took a lot of the responsibility, because you know he didn't have epilepsy and I did.
Charli describes how she explained to her 4-year-old son what epilepsy is and how 'mummy's brain...
Charli describes how she explained to her 4-year-old son what epilepsy is and how 'mummy's brain...
Age at interview: 23
Sex: Female
Age at diagnosis: 18
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I said to him [her son] that mummy has fits, I told him that word because it was a short word and it's, and it's easy to remember. I said, 'mummy's brain gets all fuzzy, and I said, 'You know what happens on the telly when, when the telly goes off, it gets all fuzzy.' And I showed him the picture of the grey fuzz on the telly, and I explained to him that's what goes on in mummy's head. I said, 'My brain's stopped working and goes all fuzzy for a little while, and then I'm fine.' It's a bit worrying, that I had to tell him that but he took it alright and he sort of understood. And I said to him, 'You have to, if mummy has a fit on the floor, you must hold mummy's head and keep it as still as you can so it's not banging around or banging on the floor, or banging against anything. And he said, 'Okay mummy.' He didn't really have a lot of questions to ask, I think he was just taking it all in. and he hasn't mentioned anything about it since apart from to his dad when he said, 'Oh I'm worried about Mummy having fits,' But he was okay, he's a really bright little boy. I would, I'd be happy in the knowledge that if anything did happen he would know what to do. I've also taught him how to call '999' and ask for the ambulance, and I've taught him his address recently so he knows his address. so if anything happened I suppose he could tell the ambulance yeah I'm proud of my little boy [laughs].
He's good. I just worry about him worrying about me that's just one thing that I hate the thought that I'm putting worry on my four year old son about my health it makes me feel really guilty but he's alright I'm sure he's handling it.
See more experiences of parenting with epilepsy.
A few people we spoke with were worried about whether their children would have an increased chance of having epilepsy. Some very rare forms of epilepsy can be inherited but generally the relationship between epilepsy and inheritance is very complex and depends on the seizure type, age of onset and several other factors, many of which are unknown.
Last reviewed May 2016.
Last updated March 2014.
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