Pregnancy and epilepsy

Pregnancy may affect your seizures or the effectiveness of your medication. If you become pregnant without having the chance to have some preconception counselling, it is recommended that you:

- keep taking your anti-seizure medication (ASM) as normal
- ask your doctor to prescribe folic acid supplements of 5mg per day
- make an appointment to see your neurologist as soon as possible.

Starting a family

Having epilepsy does not necessarily mean that starting a family will be any more difficult for you than for anyone else.  
However, it may mean that you have a few more things to consider before, during, and after your pregnancy.

Preconception counselling

If you are thinking of starting a family, it is essential to talk to your neurologist about planning your epilepsy treatment for your pregnancy and for when your baby arrives.

It is important that you do this before you become pregnant. 

You may have questions about the type of medication you take, the dose, how being pregnant could affect your seizures, and how seizures could affect your unborn baby. 

Because women with epilepsy have a slightly higher risk of complications than women who don’t have epilepsy, forward planning can help keep these risks to a minimum.

If you have seizures, you are likely to be advised to keep taking your ASM throughout your pregnancy. Your doctor may suggest adjusting your ASMs so you take the lowest possible dose that will still control your seizures. However, some ASMs are used up more quickly in the body during pregnancy, so the dose may need to be increased during your pregnancy to keep your seizures under control (see below).
Your doctor might suggest a change to the type of ASMs that you take, as some are more risky to unborn babies than others. 

Women with epilepsy who take ASM during pregnancy have a higher risk of having a baby with a birth abnormality than women with epilepsy who don’t take ASM. 

Because of the possible effects of ASM on an unborn baby, having your ASM reviewed before you become pregnant can help you and your neurologist make sure that you are taking the most appropriate ASMs and at the most suitable dose during your pregnancy. 

Some women prefer not to take ASM during their pregnancy and may want to discuss this option with their neurologist. If you have seizures during pregnancy there is a risk of injury to yourself and your baby. This risk could be higher (depending on the type and frequency of seizures you have) than the risk of the ASMs affecting your baby. See below for more about these risks. 

If you have been seizure-free for two or three years, your doctor might suggest slowly stopping your ASM before you try for a baby. However, if your ASM is stopped there is a risk that your seizures could start again. 

Having seizures could affect your home or work life, and if you are currently driving and have a seizure, you will need to stop driving and tell the DVLA. How long you will need to stop driving for may depend on the type and number of seizures you have had.

Making decisions about your medication is not always easy and preconception counselling can give you the chance to ask any specific questions or talk about concerns you have. 
 

Getting pregnant

Many people with epilepsy have children and a normal family life. Having epilepsy doesn’t usually make it harder for a woman to get pregnant. However, anxieties around having epilepsy, taking medication, and the possibility of seizures can all affect how you may feel about starting a family. 

Certain anti-seizure medications (ASMs) may reduce the  production of sperm for some men, which could lower a man’s fertility. 

Reduced sperm production and Polycistic Ovary Syndrome (PCOS) are treatable but they can make becoming pregnant more difficult. 

Although you may be concerned that ASMs might affect your chances of becoming pregnant, it is important not to stop taking ASMs suddenly and without the medical guidance of your neurologist or GP.

Some people with epilepsy have a low sex drive. Some men say they struggle to get an erection. Low sex drive and problems with arousal can happen for a number of different reasons including anxiety, depression, or side effects of some ASMs. 

Both of these problems can be common for people who have focal impaired awareness seizures in the temporal lobe, as this area of the brain is related to sex drive. 

These problems can make it difficult for a woman to become pregnant. If you are concerned about your sex drive or sexual response you can ask your doctor for advice.

What is pre-natal screening?

Pre-natal screening is the name for a number of different checks that all women have done during pregnancy, to see how their baby is developing in the womb. These include ultrasound scans which are done at certain intervals throughout pregnancy, commonly at 12 weeks (known as the ‘dating scan’) and at 18 – 20 weeks (known as the ‘anomaly scan’). 

Women are also offered blood tests that measure a number of things including alphafetoprotein (AFP) levels.

AFP is a type of protein which is passed from an unborn baby to its mother. The levels of AFP in a mother’s blood can indicate the risk of their baby being born with certain disorders including spina bifida. Screening does not show for certain if a baby will be born with or without any birth abnormalities. However, it can help to determine the risk of a baby being born with birth abnormalities.

Why is taking folic acid recommended?

Folic acid (vitamin B9) helps a developing baby’s spine to form, and reduces the risk of neural tube defects, for example spina bifida. 

The Department of Health recommends that all women planning to have a baby take 0.4 μg (400 micrograms) of folic acid daily, and throughout the first 12 weeks of pregnancy. 

It is strongly recommended that women with epilepsy take a higher dose of 5000 micrograms (5 milligrams) of folic acid daily, as soon as they start trying for a baby and for at least the first 16 weeks of their pregnancy, or for the whole pregnancy if their doctor feels this is appropriate. This strength of folic acid is only available on prescription but will be free of charge.

Pregnancy 

Most women with epilepsy have no change in their seizure frequency during pregnancy. However, you might find that your seizures are better controlled during pregnancy, or that you have more seizures than is usual for you. This could be because of the common side effects of pregnancy such as tiredness, or the effects of morning sickness on your ASMs.

If you are having more seizures while pregnant than you normally do, you can talk to your neurologist about how to manage the situation safely for you and your baby.

Could pregnancy affect my ASMs? 

During pregnancy your body may use up more of your ASMs than usual. This means that the amount of ASM you normally take may not be enough to stop your seizures from happening. This is especially true for the ASM lamotrigine (Lamictal).

Routine monitoring of ASM levels in pregnancy is not generally necessary. However, your neurologist might ask you to have blood tests to make sure that the amount of ASM you take is at the right level for you and your baby throughout your pregnancy, especially if your seizures increase or are likely to increase. 

Testing the levels of the ASM in your blood helps your neurologist decide if the dose needs to be changed. If your dose needs to be changed, it will usually be slowly reduced back to its original level after you give birth. However, if the higher dose has led to better seizure control after the birth, and there is no evidence that this dose is causing you problems, then you and your neurologist may decide to leave your ASM at this new dose. 

Can morning sickness affect my ASMs?

Despite the name, morning sickness can happen at any time of the day and affects some women during the first 12 weeks of  pregnancy, although it can last longer. If you are sick after taking your ASMs, the medication may not have a chance to work properly. 

Changing the time of day you take your ASMs, for example taking them when you’ve stopped feeling sick, may be helpful. However, it is important (as far as possible) to keep the length of time between doses the same. Your doctor should be able to advise you on how best to manage your ASMs.

Can seizures affect an unborn baby?

There is no evidence that the seizure activity in focal aware, focal impaired awareness, absence, or myoclonic seizures are harmful to an unborn baby. However, if you injure yourself during any type of seizure, this can carry risks. Tonic clonic seizures could potentially cause miscarriage or serious harm to you and your baby. In rare cases, women with epilepsy have died during pregnancy, mostly due to poor seizure control.

To reduce any risks to you and your baby, the aim is for you to be as seizure-free as possible during your pregnancy. Taking your ASMs as prescribed, and telling your doctors or midwife about any seizures you have, can be helpful.

What if I’m already pregnant?

If you become pregnant without having the chance to have preconception counselling, it is recommended that you: 

• keep taking your ASM as normal;
• ask your doctor to prescribe daily folic acid supplements of 5mg (see above); and
• make an appointment to see your neurologist as soon as possible.

The UK epilepsy and pregnancy Register

If you have epilepsy and want to try for a baby, or you are already pregnant, you might like to contact the register. 

This is a long-term study looking into the outcomes of children born to women with epilepsy, including the possible effects of ASMs on unborn babies. 

If you join the register, you will be asked about your epilepsy and any ASMs that you take, and the register research team will contact you after your baby is born at set time points to find out how you and your baby are doing. 

It is free of charge to be part of the study and over 11,000 women have taken part so far. Participating in the register includes follow up of your baby’s development and it is hoped that the findings from the study will provide some answers and guidance for other women in the future.

Further information

National Institute for Health and Care Excellence.
nice.org.uk/guidance/ng217 
Guidance on the diagnosis and treatment of epilepsy.

Epilepsy Society is grateful to Dr F J Rugg-Gunn, Consultant Neurologist & Honorary Associate Professor Clinical Lead, Chalfont Centre for Epilepsy, who reviewed this information.

Information updated: September 2023