Epilepsy is common, affecting around 600,000 people in the UK. It usually begins in childhood, but can start at any age. The main symptoms of epilepsy are repeated seizures.
A seizure happens when abnormal patterns of electrical activity arise in the brain. It may cause the body to move in an uncontrolled way, and can also cause loss of consciousness for a short period.
Planning on getting pregnant
If you are taking anti-epileptic drugs (AEDs) and you are planning to get pregnant, you should continue to use contraception and take your medication until you discuss your plans with your neurologist or GP. This is because you may need some changes to your medication, and this should only be done under the supervision of your specialist.
Some AEDs can harm an unborn baby, but there is also a risk from having uncontrolled seizures in pregnancy.
Epilepsy during pregnancy
It's hard to predict how pregnancy will affect epilepsy. For some women their epilepsy is unaffected, while others may see an improvement in their condition. However, as pregnancy can cause physical and emotional stress, seizures may become more frequent and severe.
Many women with epilepsy use AEDs to keep their seizures under control. Research has shown that there may be an increased risk of foetal anti-convulsant syndrome (FACS) in children born to mothers who have taken some AEDs during pregnancy. A child with FACS may have a number of physical or brain development (neurodevelopmental) difficulties, including the ones listed below.
These drugs may increase the risk of physical defects such as spina bifida, heart abnormalities and cleft lip. Depending on the type of drug and the dose you are taking, there may also be an increased risk of developmental problems in the baby, such as:
- lower intellectual abilities
- poor language skills (speaking and understanding)
- memory problems
- autistic spectrum disorders
- delayed walking and talking
Before you get pregnant (or you think you might be pregnant unexpectedly, or are planning to get pregnant) discuss your treatment with an obstetrician and a neurologist who knows about your epilepsy. They may want to consider an alternative treatment. It is usually better to make any changes to drug treatment before rather than during pregnancy.
If you get pregnant while you are taking an AED, continue to take your medication and contact your specialist immediately to discuss your drug treatment. Do not alter your drug treatment or stop taking your medication without specialist advice, especially during pregnancy. This is because a severe seizure in pregnancy could result in harm or injury, or possibly even death, to you or your baby.
The risk of harm to the baby is known to be higher with some AEDs, such as sodium valproate, than with others, and when two or more AEDs are taken together (called polytherapy).
The risk of physical defects in babies whose mothers take sodium valproate in pregnancy is around 11%, compared with 2-3% for children in the general population. This means that out of 100 women with epilepsy who take sodium valproate in pregnancy, 11 will have a baby with a physical defect.
The risk of neurodevelopmental problems is approximately 30-40% (30-40 out of 100) in babies of women who take sodium valproate in pregnancy.
If you are taking sodium valproate and you plan to get pregnant, or you find out that you are pregnant, do not stop taking your medication. See your specialist immediately to discuss your pregnancy and your treatment.
You can read more about sodium valproate and pregnancy in guides for patients and professionals published by the Medicines and Healthcare products Regulatory Agency (MHRA) in February 2016.
If you’re taking drugs to control your epilepsy, it’s recommended that you take a high, 5 milligram (5mg) dose of folic acid every day as soon as you start trying for a baby. This will need to be prescribed for you, usually by your GP, as 5mg tablets are not available without a prescription.
You should make an appointment to see your GP as soon as possible. If you become pregnant unexpectedly and have not been taking folic acid, start taking it straight away. It's possible to buy the lower dose 400 microgram (mcg) tablets from a pharmacy before you get a prescription for the 5mg tablets.
If you need any advice, talk to your GP or pharmacist.
Your care during pregnancy
Before you become pregnant, or as early in 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 will be offered ultrasound scans to help detect any developmental problems in your baby. You may need extra blood tests to check the level of anti-epileptic drugs in your blood, depending on which AEDs you take.
You may be worried about your baby inheriting your epilepsy. However, you can talk to your care team about this and any concerns you have.
Labour, birth and beyond
Although there's a low risk of having a seizure during labour, it's recommended that you give birth in a consultant-led maternity unit in hospital. You can read about a hospital birth in the Where can I give birth? page.
During labour you'll be looked after by a midwife, and doctors will be available if you need their help. Read about what happens in labour.
Because some AEDs reduce the ability of your baby's blood to clot, your baby will be given a vitamin K injection soon after birth.
There's usually no reason why you can't breastfeed your baby. Even if some of your medication 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 & Pregnancy Register
This nationwide project is investigating which epilepsy treatments will pose the lowest risk to a baby's health. Any pregnant women with epilepsy can join the UK Epilepsy & Pregnancy Register.
When you register, you will be asked to provide information about the treatment you are taking. Information about the health of your baby will be collected after your baby is born. This helps doctors give the best advice to women who are thinking of getting pregnant.