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Pregnancy, epilepsy and epilepsy medicines
Pregnancy could affect your epilepsy, and epilepsy medicines can increase your risk of having a baby with a birth problem. The risk varies, depending on your type of epilepsy, how well your seizures were controlled before pregnancy, and which epilepsy medicine you take.
The dose of epilepsy medicine is important too. Getting specialist support at the right time, particularly if you are at risk of an unplanned pregnancy, may reduce these risks.
What is pre-conception counselling?
Pre-conception counselling happens before you get pregnant. It’s an appointment, or series of appointments, with a doctor or nurse who knows about pregnancy and epilepsy. The aim is to review your epilepsy and your epilepsy medicines. Some medicines carry a higher risk of harming your baby if you take them during pregnancy.
Other medicines carry a much lower risk but might not control your seizures as well. The counselling will help you to decide which dose of which epilepsy medicine to take to prepare for any future pregnancy.
The doctor or nurse might suggest you change your epilepsy medicine to one that carries a lower risk, before you get pregnant. Or they might change it to try to get your seizures under better control. Their advice will depend on your circumstances, and how you feel about making any changes. Before you start any changes, they will make sure you have highly effective contraception.
How do I get pre-conception counselling?
You can ask your GP to arrange pre-conception counselling for you at any age – even before you have started a sexual relationship. It’s especially important if you are thinking of becoming pregnant in the near future, or if there’s any chance that you could get pregnant.
What are birth problems?
Birth problems are sometimes called birth defects or congenital anomalies. They happen when a baby doesn’t develop properly in the womb. Birth problems can be minor or major. Minor birth problems don’t usually need any treatment. They include minor abnormalities of the fingers, toes or limbs.
Major birth problems usually need treating. They include things like spina bifida, a hole in the heart, or a cleft palate (where the roof of the mouth is not correctly joined).
Any woman can have a baby with minor or major birth problems, but some epilepsy medicines can increase the risk.
Epilepsy Action has more information about epilepsy medicines and their individual levels of risk.
Do I need folic acid?
All women are recommended to take folic acid before and during pregnancy, to reduce the risk of having a baby with spina bifida. For women without epilepsy, or not taking epilepsy medicines, the usual dose is 400 micrograms. For women taking epilepsy medicines, the dose is 5000 micrograms (5 milligrams). To get a 5 milligrams dose you will need a prescription from your GP.
When should I start taking folic acid?
If you take epilepsy medicine, it is recommended you take 5 milligrams of folic acid daily if there is any chance you could become pregnant. You will usually need to continue with it for the first 3 months of your pregnancy.
Will folic acid affect my epilepsy medicine?
If you take phenytoin, phenobarbital or primidone, folic acid could affect how well those medicines work. This could cause you to have a seizure, so speak to your doctor before starting folic acid.
UK Epilepsy and Pregnancy Register
The aim of the register is to find out which type of epilepsy treatment women are taking while they are pregnant. It’s also to collect information on the health of their babies after delivery.
If you have epilepsy and are pregnant, the register would be delighted to hear from you: epilepsyandpregnancy.co.uk, or call freephone 0800 389 1248.
Research into epilepsy and fertility in women is currently limited. There have been some studies which have looked at whether women with epilepsy have an increased risk of fertility problems. However, these studies have often found different results.
One recent study suggests that unless you already have a known fertility problem, you should have the same chance of getting pregnant as someone without epilepsy. This study did not include women who already had a known fertility problem, such as Polycystic Ovary Syndrome (PCOS).
Other studies have found epilepsy and epilepsy medicines can cause certain health problems, which could make it harder for some women to get pregnant. For example, women with epilepsy are more likely to have problems with their periods and PCOS.
More research is needed to fully understand how epilepsy and epilepsy medicines might affect fertility.
We describe some of the problems that can increase your risk of fertility problems below:
Your menstrual cycle can be affected by your epilepsy, the number of seizures you have, your age, or your epilepsy medicine. Some women with epilepsy find that their periods don’t follow a pattern, or happen very rarely. This could make it difficult to work out when you are most likely to have a chance of getting pregnant.
If your periods don’t follow a pattern, or happen rarely, it’s a good idea to talk to your GP. They might give you advice or suggest you have some blood tests. If they feel your epilepsy or epilepsy medicine could be affecting your menstrual cycle, they may refer you to a gynaecologist and an epilepsy specialist.
Polycystic ovary syndrome
Another possible cause of irregular periods is polycystic ovary syndrome (PCOS). If you have PCOS, you have cysts on your ovaries and unusual hormonal levels. This might stop you from ovulating (releasing an egg) every month and will make it difficult for you to become pregnant. You might also have other symptoms with PCOS including hair loss, weight gain, acne and more hair on your body and face than you might expect.
Any woman can be affected by PCOS. But studies suggest it’s more common in women with epilepsy, who are taking epilepsy medicines, particularly women taking sodium valproate. If you are concerned that you might have PCOS, talk to your doctor. With treatment, most women with PCOS are able to get pregnant.
You might be worried that your epilepsy medicine is causing you to have PCOS. However, it’s very important you don’t stop taking it without speaking with your doctor. If you suddenly stop taking epilepsy medicine, it could cause you to have more seizures. Or they might become more severe.
Treatment for fertility problems
It’s a good idea to speak to your GP if you’ve not been able to get pregnant after a year of trying. Women aged 36 and over, and anyone who’s already aware they may have fertility problems, should see their GP for advice sooner. They can look into the possible reasons for you and your partner and, if needed, suggest treatment.
If you have reduced fertility, you might be offered treatment with hormone-based drugs to help you get pregnant. Some women with epilepsy have said they have had more seizures than usual while taking these. Your doctor should consider any possible interactions with your epilepsy medicines and may make temporary changes to these to reduce the risk of this hormone treatment affecting your seizures.
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