Epilepsy in Young People
Contraception, fertility and pregnancy with epilepsy
Here young people talk about their experiences of different contraceptive methods and their thoughts on and experiences of fertility, pregnancy and having children.
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...
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...
Bex is on two AEDs which could cause birth defects in babies. She says it's important, but also...
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...
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.
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.
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...
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 ...
Donna fell down the stairs when she had a seizure during her pregnancy but the baby was fine.
Donna says her pregnancy was a constant worry and she had many seizures. She was well cared for...
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.
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...
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...
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.
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.