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. Having seizures well controlled before pregnancy will mean you are less likely to have seizures during pregnancy. For most people to achieve good seizure control they need to continue taking epilepsy medication. 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, such as improving seizure control and reviewing your epilepsy medication. 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 dose or switching to a safer alternative epilepsy medication
  • withdrawing your treatment. This may be possible if you’ve not had seizures for a long time. Your doctors can advise on your personal risks as these will depend on your epilepsy diagnosis and the type of seizures you experienced.

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 doctors, including your epilepsy specialist. 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 epilepsy medications during pregnancy can increase the risk of birth defects for a baby, 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

Valproate medicines include sodium valproate (Epilim, Episenta, Epival, Depakote) and valproic acid (Convulex).

If you are taking valproate medicines and could become pregnant, you need to use an effective method of birth control (contraception) that has been recommended by a health care provider. You’ll need to use this at all times during your treatment with valproate. This is to reduce the risk of an unplanned pregnancy as valproate can cause birth defects and developmental difficulties in babies.

You will be offered a yearly review to confirm that valproate remains the most effective medication to control your epilepsy, and to talk about whether you want to become pregnant or not in the next year.

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.

In 2024 the Medicines and Healthcare products Regulatory Agency (MHRA) launched new measures to tighten prescribing of valproate medications for both women and men with epilepsy (and bi-polar conditions). 

The measures say that Valproate should not be started by patients aged under 55 years unless two specialists have agreed that their condition does not respond to other treatments and the benefits of valproate outweigh the risks.

You can read more about these measures and what they may mean for you here.

You can also read about sodium valproate on the NHS website here.
 

If you’re taking valproate and want to get pregnant, speak to your GP before stopping contraception. This is to make sure you have time to switch to another treatment before you come off contraception. Don’t stop taking your medicine, unless you are advised to.

If you think you are pregnant while taking valproate, request an urgent appointment with your GP. They will be able to refer you to your health care specialist.

Valproate may cause infertility in men. This may get better after use of the medicine is stopped. Even though it may affect fertility, valproate is not a contraceptive. 

Topiramate

Topiramate is another epilepsy medication that increases risks of birth defects and developmental difficulties for a child if taken during pregnancy. If you’re taking it and want to try for a baby, speak to your GP before stopping contraception. 

You will be offered a yearly review to confirm that topiramate remains the most effective medication to control your epilepsy, and to talk about whether you want to become pregnant or not in the next year. 

You will need to use contraception at all times when taking topiramate to prevent unplanned pregnancy. If you know you’d like to become pregnant, speak with your health care provider about reviewing the option to switch to an alternate epilepsy medication with lower risks.

Topiramate doesn’t reduce fertility. You’ll need to keep using contraception until your doctor advises it’s safe to stop. 
 

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.

Vitamin D

Before and during pregnancy, you may need a higher dose of Vitamin D supplements, especially if you take certain epilepsy medications referred to as enzyme-inducing.

These medications are linked with lower vitamin D blood levels and can reduce bone health. Having a good vitamin D level is important for a developing baby.

Your doctor and epilepsy specialist can give advice and prescribe vitamin D. Sometimes they might check your level of vitamin D with a blood test. 
 

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)

NHS (2020). Epilepsy – Treatment. Available at: https://www.nhs.uk/conditions/epilepsy/treatment/. Page last reviewed 18 September 2020. Next review due 18 September 2023. Accessed 8 November 2024.

NHS (2021). Sodium valproate. Available at: https://www.nhs.uk/medicines/sodium-valproate/. Page last reviewed 24 August 2021. Next review due 24 August 2024. Accessed 8 November 2024.

NHS (2022). Pregnancy, fertility and breastfeeding while taking topiramate. Available at: https://www.nhs.uk/medicines/topiramate/pregnancy-breastfeeding-and-fertility-while-taking-topiramate/. Page last reviewed 4 April 2022. Next review due 4 April 2025. Accessed 8 November 2024.

NICE (2022). Epilepsies in children, young people and adults. Available at: https://www.nice.org.uk/guidance/ng217. Accessed 8 November 2024.

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