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 conceive a baby.

Why is it important to plan my pregnancy?

Most women with epilepsy have a healthy pregnancy. However it can have an effect on your fertility and there are also some risks linked to epilepsy medication and baby’s development in the womb.

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

It is important not to stop taking medication before talking to a doctor or specialist about it. 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 preconception counselling. This will be an appointment with a doctor or nurse who knows about pregnancy and epilepsy. 

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

  • carrying on with your current medication regimen
  • adjusting your medication
  • stopping your treatment altogether.

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 immediately. Don’t change or stop taking your medicine without speaking to them first. This could cause a more severe seizure, which could result in harm, or even death to you or your baby.

The UK epilepsy and pregnancy register

This is nationwide project investigating which epilepsy treatments pose the lowest risk to a baby's health. Any pregnant women with epilepsy can join.

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

Fertility

Women with epilepsy may have a slightly higher risk of fertility problems than women who don’t have the condition. This means it may take longer for you to get pregnant.

Talk to your doctor if you are concerned. Reduced fertility can sometimes be treated with hormone-based medications.

Men and epilepsy

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

Testosterone

Testosterone is a male sex hormone responsible for many things that affect a man’s sex life. Epilepsy and some medications used to manage the condition can reduce testosterone levels. This can cause:

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

Fertility

There is some evidence that men with epilepsy may not be as fertile as men who don’t have the condition. This can make it more difficult to father a baby. For men, some epilepsy medications can:

  • reduce the amount of sperm produced
  • affect the quality of sperm produced.

Remember there are other more common causes to sexual problems than epilepsy, such as tiredness, alcohol  or emotional stress. But if you or your partner have any concerns about epilepsy and male sexual problems, including fertility, speak to your doctor. They may refer your partner to an epilepsy specialist.

Your menstrual cycle

Some women with epilepsy have irregular periods. This can make it difficult to know when the best time is to try and get pregnant. Talk to your doctor if you have irregular periods. They may refer you to an epilepsy specialist if they think your epilepsy medicine is causing the problem.

Polycystic ovary syndrome

Polycystic ovary syndrome (PCOS) causes cysts on the ovaries and unusual hormone levels. This can stop a woman from ovulating, which makes it difficult to get pregnant. Any woman can be affected by PCOS but research suggests it’s more common in women with epilepsy.

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

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 treatment and pregnancy

Some anti-epileptic drugs carry risks in pregnancy. This can depend on the type, number and the dose you are taking.

This includes birth defects, such as:

  • spinal bifida
  • heart abnormalities
  • cleft lip.

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

  • lower intellectual abilities
  • 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. This may be more harmful to your unborn baby than if you carry on taking them, because it may cause uncontrolled seizures in pregnancy.

Valproate medications

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

Doctors in the UK have been advised not to prescribe valproate to girls, women who could get pregnant, or women who are pregnant unless other epilepsy medicines do not suit them.

If you’re taking valproate and want to get pregnant, speak to your GP. 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 the aim of your treatment will be to manage your condition as effectively as possible during pregnancy.

This means finding a medication regimen that will control your seizures effectively and minimise the risk of harm to your baby’s development in the womb as much as possible.

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

Folic acid and medication

Every woman is recommended to take folic acid two to three months before conceiving and until they are at least 12 weeks pregnant.

If you’re taking medication to control your epilepsy, it’s recommended that you 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 without a prescription.

Will folic acid affect my epilepsy medication?

If you take phenytoin, phenobarbital or primidone, folic acid could affect how well those medicines work. This could cause you to have a seizure, so speak to your doctor before starting folic acid.

More support and information

Epilepsy Action works to raise awareness of epilepsy, campaigns for accessible healthcare services and provides information to people living with the condition about their care and treatment.

NHS Choices provides information on living with epilepsy

Sources

1. Clinical Knowledge Summaries (Sept 2017) Epilepsy https://cks.nice.org.uk/epilepsy 

2. NHS Choices (2015) Epilepsy and pregnancy https://www.nhs.uk/conditions/pregnancy-and-baby/epilepsy-pregnant/ (Page last reviewed 04/04/2018 Next review due: 04/04/2021)

4. Epilepsy Action (2015) Sex, men and epilepsy https://www.epilepsy.org.uk/info/daily-life/sex/men/sex-life (Page last reviewed October 2015 Next review due: October 2018)

5. Epilepsy Action (2017) Sodium valproate medicines and risks in pregnancy https://www.epilepsy.org.uk/info/daily-life/having-baby/valproate-pregnancy (Page last reviewed May 2018 Next review due: May 2021)

7. Royal College of Obstetricians and Gynaecologists (June 2016) Epilepsy in Pregnancy https://www.rcog.org.uk/globalassets/documents/guidelines/green-top-guidelines/gtg68_epilepsy.pdf

8. Epilepsy Action (2017) Planning a baby https://www.epilepsy.org.uk/info/daily-life/having-baby/planning (Page last reviewed January 2017 Next review due: January 2020)

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Last reviewed on July 12th, 2018. Next review date July 12th, 2021.

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