Pregnancy and epilepsy

If you are pregnant

Most pregnant people with epilepsy will have normal pregnancies and healthy babies.

Contact your GP as soon as you find out you are pregnant, so they can assess your health. You will be supported by a number of different healthcare professionals. The GP can arrange appointments to see the right people, such as a midwife, obstetrician, neurologist, or epilepsy specialist nurse if needed.

Women with Epilepsy has a pregnancy toolkit than you can download. The toolkit should list emergency contact details of your team. It should also have a summary of your epilepsy, treatment and your management plan.

Do not stop taking your epilepsy medicine when you find out you are pregnant. But do speak to your GP or epilepsy specialist for information about your medicine.

However, if you are taking any of these medicines while pregnant, you need to speak to your doctor:

• Sodium valproate
• Carbamazepine
• Phenobarbital
• Phenytoin
• Pregabalin
• Topiramate

Taking folic acid during pregnancy

If you’re taking medicine to control your epilepsy, you will need to take folic acid 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.

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

Seizures during pregnancy

Around one in three people with epilepsy have an increase in seizures during their pregnancy. This can be due to their type of epilepsy, whether they are taking their medicine as prescribed, or lack of sleep.

Some people might have seizures because the level of their epilepsy medicine in their blood changes during pregnancy. Your epilepsy specialist may recommend that you have regular blood tests if you are taking certain medicines. If the level of medicine in your blood changes, your doctor may adjust your dose. It’s up to you to decide whether you want these blood tests.

During your pregnancy you will receive lots of information and advice from medical professionals. The doctors, nurses and midwives will help you decide what is best for you and your baby.

If your seizures change while you are pregnant, ask your GP or epilepsy specialist for an urgent review of your medicine. It may be useful to keep the contact details of your epilepsy specialist and maternity team with you at all times in case you need to contact them quickly.

For some people, the hormones created while you are pregnant can affect your seizures. If your seizure control changes, speak to your GP or epilepsy specialist.

If I have seizures during pregnancy, will it harm my baby?

Most pregnant people who have epilepsy do not have seizures during pregnancy, but, if you do, it is important to see a medical professional advice immediately.

Seizures could be harmful to your baby, particularly if you have frequent tonic-clonic seizures, or status epilepticus.  Tonic-clonic status epilepticus is when a tonic-clonic seizure lasts for five minutes or more, or when you have one tonic-clonic seizure after another without regaining consciousness in between.

Though most babies are not harmed during a seizure, during a tonic-clonic seizure your baby could get less oxygen in the womb. If you have a tonic-clonic seizure while pregnant get medical advice as soon as possible.

Some seizures, particularly tonic-clonic seizures, can put you at risk of injury. A significant injury to your tummy area could cause bleeding or your waters to break. Although the risk is low, this could lead to infection and early labour.

Epilepsy Action has more information about seizure types and status epilepticus.

If your blood group is Rhesus Negative you may need further medicine to protect your baby, you can find out more on the NHS website.

Eclampsia and pre-eclampsia

Pre-eclampsia is a condition that affects some pregnant people and can appear at any time during the pregnancy, during or after the birth of your baby. Symptoms vary in each person and can include high blood pressure, headaches, blurred vision and protein in your pee. Usually these symptoms are picked up during antenatal appointments.

If you do have pre-elcamsia, your maternity doctor will talk to you about your care. They will try to stabilise your condition and plan the best time to have your baby. Care can include taking medicine to lower your blood pressure, monitoring your baby more closely or having extra blood tests. In most cases pre-eclampsia won’t lead to any further problems for you or your baby.

If left untreated pre-eclampsia can lead to eclampsia, which is less common in pregnancy.

Eclampsia can cause seizures but it is not epilepsy. Usually these seizures are short, lasting for less than a minute. Most pregnant people make a full recovery.

The NHS website has more information on pre-eclampsia.

Could pregnancy be dangerous for me?

Most people living with epilepsy will have a healthy pregnancy. During every pregnancy there is a very small risk that the mother could die. If you have epilepsy, there is a higher risk of sudden unexpected death in epilepsy (SUDEP) during the pregnancy and in the 12 months afterwards. There could be many reasons for this, including having a seizure.  Sometimes lack of sleep or missing epilepsy medicines can cause an increase in seizures.

What scans and tests will I need during pregnancy?

You might not need any extra tests while you are pregnant, just because you have epilepsy, but routine tests recommended in pregnancy include:

• Blood tests to check your blood group, Rhesus status, iron levels and infection markers
• Scans of your baby to monitor the growth and wellbeing of your baby.

If you need extra appointments and scans to check your baby’s development your doctor or midwife will talk to you about why you need. You may also need blood tests to check the level of epilepsy medicines in your blood, depending on which medicines you take.

Extra blood tests and monitoring

This is recommended if you take carbamazepine, lamotrigine, levetiracetam, oxcarbazepine, phenobarbital or phenytoin. Research has shown levels of these medicines can decrease during pregnancy, making you more at risk of having seizures, so you may need a different dose.

You will be offered a dating ultrasound scan between 10 and 14 weeks and a scan between 18-21 weeks to take a close look at your baby and your womb. Otherwise, you will be assessed on an individual basis, to see if you need further scans or monitoring. If it is your first baby you will be offered more regular appointments.

Screening tests

It’s up to you whether you want to have screening tests to check your baby’s health and development. You might choose to have all the tests, or to have some tests, but not others. The screening tests sometimes identify a problem that needs to be investigated further to check what impact it will have on your baby’s life. If this happens, the doctor will give you all the information you need to help you make decisions about what to do.

If you need more support, or help to make decisions, the maternity team will tell you about specialist support groups or services available.

More information

Antenatal Results and Choices (ARC)
The ARC webpage provides information and advice on antenatal screening and diagnostic tests and what to do once you get the results back.

The UK Epilepsy and Pregnancy Register
The UK Epilepsy and Pregnancy Register was set up to help professionals increase their understanding about the impact of epilepsy medicine on the baby and pregnant person. You will be asked to join the register and to give information about your medication, pregnancy and health of your baby.

Epilepsy in Pregnancy – The Royal College of Obstetricians and Gynaecologists
Information about epilepsy in pregnancy. It may also be helpful if you are a partner, relative or friend of someone who has epilepsy and is pregnant or planning a pregnancy.

Epilepsy Medicines and Pregnancy (MHRA)
The Medicines and Healthcare Regulatory Authority (MHRA) has created a safety leaflet to help support you in understanding the risks of epilepsy medicines in pregnancy.