Epilepsy and pregnancy

If you have epilepsy you may be nervous about what it means for your pregnancy and baby.

Try not to worry, as it is likely that you will have a healthy pregnancy and go on to have a healthy baby. But there is a slightly higher risk of having a baby with a birth defect or developmental problem, so it's important to get the right support.

Important

If you find out you're pregnant, do not stop taking your anti-epilepsy medicine until you've spoken with your doctor or specialist.

Planning on getting pregnant

If you're taking anti-epileptic drugs (AEDs) and you're planning to get pregnant, you should continue to use contraception and take your medicine until you discuss your plans with a GP or epilepsy specialist (neurologist).

This is because your doctor may want to make changes to the dose or type of medicine you are taking, which is best done before you become pregnant.

You should also be offered pre-conception counselling, which will help you understand any risks and plan for a healthy pregnancy and baby.

Men who take sodium valproate or valproic acid and are planning to start a family, or whose partners could get pregnant should speak to their doctor.

You should both use contraception while you're taking valproic acid or sodium valproate and for at least 3 months after stopping.

This is because there's a small risk these medicines may cause learning or behavioural problems in your child if you become pregnant while your partner is taking these medicines.

Effect of pregnancy on your epilepsy

It's difficult to predict how pregnancy will affect epilepsy. Your epilepsy may be unaffected, or you may see an improvement in your condition.

However, as pregnancy can cause physical and emotional stress, as well as increased tiredness, your seizures may become more frequent. If this happens to you, let your doctor, midwife or neurologist know.

Risks from epilepsy medicines

Research has shown that there is an increased risk of your child not developing normally if you take some types of AED during pregnancy, including:

• sodium valproate
• valproic acid
• carbamazepine
• phenobarbital
• phenytoin
• topiramate

These medicines may cause problems such as spina bifida, cleft lip or heart abnormalities. They may also give your baby a higher chance of brain development problems, such as a delay in developing speech and language, and problems with memory and attention.

To reduce these risks, talk to a GP or neurologist about your medicines before you get pregnant or if you're planning to get pregnant. They may want to switch you to an alternative treatment. Lamotrigine and levetiracetam are safer medicines to take in pregnancy.

It's usually better to make any changes to your medicine before rather than during pregnancy.

If you get pregnant while you're taking an AED, continue to take it and contact your GP or neurologist immediately to discuss your treatment.

Do not change your treatment or stop taking your medicine without specialist advice, especially during pregnancy. This is because a severe seizure in pregnancy could result in harm or injury to you or your baby.

Read the GOV.UK safety leaflet about epilepsy medicines and pregnancy

Sodium valproate and valproic acid

There is a small risk of harm to your baby with the valproate medicines sodium valproate and valproic acid.

If you or your partner are taking a valproate medicine and are planning to get pregnant or find out that you are pregnant, do not stop taking your medicine. See a GP or neurologist immediately to discuss your increased risk and whether this is still the best treatment for you.

Women living with epilepsy who are able to get pregnant must not be given a valproate medicine unless no other treatment is suitable and they have enrolled in Prevent, the valproate pregnancy prevention programme. This is designed to make sure they understand:

• the risks of taking valproate medicines in pregnancy
• the need to use effective contraception to prevent pregnancy

As part of the pregnancy prevention programme, you'll need to:

• see your consultant at least once a year to discuss your treatment
• discuss the risks of your medicine and the importance of avoiding pregnancy
• sign a form stating you understand the risks to your unborn baby if you take a valproate medicine, and agree to use effective contraception throughout your treatment

Your doctor may refer you to contraception services.

Your doctor will give you an information leaflet to explain more about the risks and how to avoid them. Keep this information in case you need to refer to it again.

Men who are taking sodium valproate or valproic acid should use effective contraception while taking it and for 3 months after stopping. This is because there's a small risk these medicines may cause learning or behavioural problems in your child if you become pregnant while your partner is taking these medicines.

Read more from the Epilepsy Society about sodium valproate

Read more from GOV.UK on valproate use by women and girls

Folic acid

If you're taking medicine to control your epilepsy, you will need to take 5 milligrams (5mg) of folic acid once a day as soon as you start trying to get pregnant

This will need to be prescribed for you, usually by a GP, as it is a higher dose than normal.

If you become pregnant unexpectedly and have not been taking folic acid, make an appointment with a GP and start taking it straight away. You can buy the lower dose 400 microgram tablets from a pharmacy before you get a prescription for the 5mg tablets.

Talk to a GP or pharmacist if you need any advice.

Your care during pregnancy

Before you become pregnant, or as early in your pregnancy as possible, you'll be referred to an obstetrician, who will discuss and plan your care during pregnancy. If necessary, a neurologist may also be involved in putting this plan together.

You may need extra appointments and scans to check your baby's development, or blood tests, to check the level of anti-epileptic medicines in your blood, depending on which AEDs you take.

You can talk to your care team about how epilepsy may be inherited and any other concerns you have.

Labour, birth and beyond

Depending on your risk of having a seizure during labour your doctors will usually recommend that you give birth in a consultant-led maternity unit in hospital.

See Where to give birth: the options for more information about giving birth in hospital.

During labour you'll be looked after by a midwife, and doctors will be available if you need their help. You should bring your epilepsy medicine with you to the hospital and continue to take it as you normally would.

Read about what happens in labour and birth. 

All newborns have low levels of vitamin K so you'll be offered a vitamin K injection for your baby soon after birth to help their blood to clot. Some AED medicines can lower their vitamin K levels further.

There's usually no reason why you cannot breastfeed your baby. Even if some of your medicine gets into your milk, the benefits of breastfeeding often outweigh any risks. Your midwife, obstetrician or pharmacist can give you advice based on your circumstances.

The UK Epilepsy and Pregnancy Register

This nationwide project is investigating which epilepsy treatments pose the lowest risk to a baby's health. If you're pregnant and living with epilepsy, you can join the UK Epilepsy and Pregnancy Register.

When you register, you'll be asked to provide information about any treatment you're taking. Information about the health of your baby will be collected after your baby is born. This helps doctors give the best advice to those living with epilepsy who are thinking of getting pregnant.