Epilepsy and planning a pregnancy

If you have epilepsy it’s very important to talk to your doctor or specialist before you start trying to have a baby.

Why is it important to plan my pregnancy?

Most people with epilepsy have a healthy pregnancy. However, some types of epilepsy medication can affect your baby’s development in the womb.

There are things that can be done now to help you and your baby stay healthy. That’s why it’s important to get the professional support you need before getting pregnant. 

Do not stop taking epilepsy medication before talking to a doctor. They will look at the safest options for you and baby.

Who do I speak to for advice about conceiving with epilepsy?

If you are taking anti-epileptic medications, ask your GP to refer you for pre-conception counselling. This is when a doctor or nurse who knows all about pregnancy and epilepsy can help you get ready for pregnancy. 

They can talk to you about how epilepsy affects you, and the risks and benefits of all the treatment options, before you become pregnant.

Your options may include:

  • sticking with your current medication
  • adjusting your medication
  • stopping your treatment.

The best option for you will depend on the type of epilepsy you have, and what medication you’re taking. Your doctors can help you make the right choice for you and your baby.

I’m waiting for a specialist appointment. Can I try to conceive in the meantime?

No, you should carry on using contraception and taking your medication until you discuss your plans with an epilepsy and pregnancy specialist.

I think I may be pregnant already. What do I do?

If you think you are pregnant, contact your doctor for advice right away. Don’t change your treatment or stop taking your medicine without speaking to them first.

Stopping medication without medical support could cause a more severe seizure. This could harm you or your baby.

Epilepsy and your fertility

Having epilepsy or taking epilepsy medication may slightly increase the risk of fertility problems. This means it may take longer for you to get pregnant.

Having epilepsy may affect your periods, or it can increase the risk of polycystic ovary syndrome (PCOS). We need more research before we can explain any possible link.

Talk to your doctor if you are concerned, or if you haven’t got pregnant after a year of trying. If you’re over 35, or know that you have fertility problems, see your doctor sooner. You may be offered hormone-based medications to help you get pregnant.

Your menstrual cycle

Some women with epilepsy have irregular periods. This can make it hard to know when the best time is to try and get pregnant.

Talk to your doctor if this applies to you. They may refer you to a specialist if they think your epilepsy medicine could be causing the problem.

Polycystic ovary syndrome

Polycystic ovary syndrome (PCOS) causes cysts on the ovaries and unusual hormone levels. This can make it harder to get pregnant.

Any woman can be affected by PCOS, but research suggests it’s more common in women with epilepsy, particularly those taking sodium valproate.

Many women with PCOS are able to get pregnant with treatment. Talk to your doctor if you’re concerned about your chances.
 

Remember

You may be worried about epilepsy and getting pregnant. But don’t change or stop taking your epilepsy medicine without speaking to your doctor. This can cause more seizures or they may become more severe.

Epilepsy and male fertility

Many men with epilepsy father healthy children. But epilepsy can sometimes cause problems for men who are trying to conceive.

Epilepsy, and some medications that are used to manage it, can reduce testosterone levels. This can cause:

  • loss of interest in sex
  • trouble getting or staying aroused (known as impotence)
  • fertility problems.

Some epilepsy medications can also:

  • reduce the amount of sperm produced
  • affect the quality of sperm that’s produced.

If you or your partner have any concerns about epilepsy and sexual problems, or fertility, speak to your doctor. They may refer you to an epilepsy specialist.

Epilepsy treatment and pregnancy risks

Some drugs carry risks in pregnancy. This can depend on the type and the dose you are taking.

Taking certain medications during pregnancy can increase the risk of birth defects, such as:

  • spina bifida
  • heart abnormalities
  • cleft lip.

There may also be an increased risk of problems with the baby’s learning and development, such as:

  • lower intelligence
  • poor language skills (speaking and understanding)
  • memory problems
  • autistic spectrum disorders
  • delayed walking and talking.

This doesn’t mean you should stop taking these medications. Doing so may be more harmful to your unborn baby than if you carry on taking them, because it may cause uncontrolled seizures in pregnancy.

Some epilepsy medications are safer than others during pregnancy. Ask your doctor or specialist to review your medication before you try to get pregnant, to find the safest option for you and your baby.

Never stop taking medication without talking to your doctor.

Valproate medications

The risk of birth defects and problems with a child’s learning and development is high if you take valproate medications. Valproate medicines include sodium valproate (Epilim, Episenta, Epival, Depakote) and valproic acid (Convulex).

Doctors in the UK have been advised not to prescribe valproate to anyone who is or could become pregnant, unless no other epilepsy medicines work for them.

If you’re taking valproate and want to get pregnant, speak to your GP before stopping contraception. Don’t stop taking your medicine, unless you are advised to.

What should happen to my epilepsy treatment before I conceive?

If you’re planning to have a baby, your doctor or specialist should review your treatment before you start trying. The aim will be to manage your condition as well as you can during pregnancy.

This means finding a treatment that will control your seizures, with the least possible risk of harm to your baby’s development in the womb.

This may involve making changes to the medication you’re taking. This should be done before you conceive.

Folic acid and epilepsy medication

If you’re planning a pregnancy, you should take folic acid. You should aim to start 2 to 3 months before you conceive and keep until keep taking it until you’re at least 12 weeks pregnant.

If you’re taking medication to control your epilepsy, you will need to take a higher dose – 5mg – of folic acid.

This can help protect your baby against neural tube defects, such as spina bifida.

Your doctor will need to prescribe these to you, because 5mg tablets aren’t available over the counter.

Will folic acid affect my epilepsy medication?

Folic acid can affect the following epilepsy medications:

  • phenytoin
  • phenobarbital
  • Primidone.

If you take any of these, you could be more at risk of a seizure if you start taking folic acid. Speak to your doctor first.

The UK Epilepsy and Pregnancy Register

The UK Epilepsy and Pregnancy Register is a nationwide project looking at which epilepsy treatments are the lowest risk for babies. Any pregnant birthing people or women with epilepsy can join.

When you register, you'll be asked to tell them about the treatment you're taking. This will help doctors give the best advice to you and others who are thinking of getting pregnant.

Join the The UK Epilepsy and Pregnancy Register.

More support and information

Epilepsy Action works to raise awareness of epilepsy, campaigns for accessible healthcare services, and provides information about care and treatment.

The NHS also has information on living with epilepsy.

Thinking about trying for a baby? Use our online pregnancy planning tool to see if you’re ready to conceive.
 

NICE (2023) Epilepsy. Available at: https://cks.nice.org.uk/topics/epilepsy/ (Accessed February 2024) (Page last reviewed 01/2024) 

NHS (2021) Epilepsy and pregnancy. Available at: https://www.nhs.uk/pregnancy/related-conditions/existing-health-conditions/epilepsy/ (Accessed February 2024) (Page last reviewed 23/04/2021. Next review due: 23/04/2024)

Epilepsy Action (2022) Sex and epilepsy – For men. Available at: https://www.epilepsy.org.uk/living/sex-and-contraception/sex-and-epilepsy (Accessed February 2024) (Page last reviewed 07/2022. Next review due 07/2023)

Epilepsy Action (2023) Sodium valproate medicines and risks in pregnancy. Available at: https://www.epilepsy.org.uk/living/having-a-baby/sodium-valproate-and-pregnancy  (Accessed February 2024) (Page last reviewed 11/2023. Next review due 08/2024)

Epilepsy Action (2023). Planning a baby. Available at: https://www.epilepsy.org.uk/living/sex-and-contraception/planning-a-baby (Accessed February 2024) (Page last reviewed 02/2024. Next review due 07/2023)
 

Review dates
Reviewed: 22 February 2024
Next review: 22 February 2027