Epilepsy and Pregnancy

Start with the reassurance, then the warning

The RCOG's key points are unambiguous: "Most women who have epilepsy do not have a seizure during pregnancy and have healthy pregnancies and healthy babies." The NHS agrees: "Most people with epilepsy have a safe pregnancy and a healthy baby."

And then the warning that outranks everything else on this page. The RCOG: "You must not stop or change your epilepsy medication unless so advised." The NHS puts it as: "Do not stop taking your usual medicines until you've talked to an epilepsy specialist."

The RCOG explains why: "Most epilepsy medication itself only carries a small risk to your baby, whereas stopping your medication could pose a serious risk to both you and your baby." It also names the rare but serious end of that risk — sudden unexpected death in epilepsy, which it says "may occur more frequently in pregnancy."

Valproate: the actual numbers

Sodium valproate is treated differently from every other antiseizure medicine, and the MHRA's published figures explain why.

According to MHRA guidance, "in women who take valproate while pregnant, around 1 in 9 babies (11%) will have a birth defect", including spina bifida, facial and skull malformations, and malformations of the limbs, heart, kidney, urinary tract and sexual organs. Separately, "in women who take valproate while pregnant, about 3 or 4 children in every 10 may have problems with early childhood development", which the MHRA describes as potentially "seriously debilitating and permanent".

Because of this, the MHRA states that "valproate must not be prescribed to any woman or girl able to have children unless the conditions of the Pregnancy Prevention Programme (PPP) are followed." NICE applies the same requirement to topiramate: NG217 says both medicines require the conditions of a Pregnancy Prevention Programme to be fulfilled for women and girls of childbearing potential.

The RCOG's advice if you are on valproate and planning a pregnancy is that your epilepsy specialist should change you to an alternative before you conceive. If you are already pregnant on valproate, the RCOG is explicit: "do not stop the medication yourself but tell your GP and epilepsy specialist straight away so they can discuss the safest options for treatment with you."

The MHRA also now publishes advice for male patients: in men who take valproate in the 3 months before conception, "about 5 children in every 100 may have neurodevelopmental conditions", though it notes the data cannot establish whether valproate itself is the cause.

Folic acid at 5 mg

This is a prescription dose, not the tablet from the supermarket. The RCOG: "Your doctor will advise you to take a daily dose of 5 mg of folic acid. This is higher than usual and will need to be prescribed for you. This higher dose is needed because of your epilepsy medication, which can increase the risk of your baby being born with spina bifida."

Timing matters. The RCOG says that because most of the baby's development takes place in the first three months, you should ideally be taking folic acid for 3 months before conceiving and continue until the 13th week. If a pregnancy is unplanned, it says to start now at the 5 mg dose.

Before you conceive

The RCOG's advice is to tell your GP you are planning a pregnancy and expect a referral to a neurologist or epilepsy specialist. NICE says the same from the clinician's side: "Refer women and girls with epilepsy who are planning pregnancy or are pregnant to an epilepsy specialist team for a review of their antiseizure medication options."

The RCOG suggests continuing contraception until you have seen a specialist and have been taking folic acid for 3 months. It also flags a practical consequence people are not warned about: changing your medication or its dose "may affect your ability to drive."

The NHS adds that contraception matters if either partner is taking epilepsy medicine, and that some epilepsy medicines may affect fertility.

Care during pregnancy

The RCOG says your midwife will refer you to a hospital antenatal clinic early, and you will be under a specialist team including an obstetrician, a midwife and a specialist healthcare professional.

Drug level monitoring is not routine but is used deliberately. NICE says to consider monitoring antiseizure medication levels in people planning pregnancy who are at risk of their seizures worsening, to obtain a baseline pre-conception concentration where monitoring is started, and to monitor and adjust doses in line with MHRA safety advice for carbamazepine, lamotrigine, levetiracetam, oxcarbazepine, phenobarbital and phenytoin. It also says that if doses are changed in pregnancy, an antenatal plan should be made to return them to pre-conception levels, starting in the first few days after birth.

You will be invited to join the UK Epilepsy and Pregnancy Register. The RCOG explains what it is: set up in 1996 "to collect information about the epilepsy medication that women take during pregnancy and the health of their babies", and it also gives advice about medicines taken in pregnancy.

Practical seizure-safety advice from the RCOG includes taking showers rather than baths, and doing what you can to protect sleep — tiredness is one of the things it names as increasing seizure frequency.

When to get help

The NHS says to get urgent medical help if you have epilepsy and:

• you have found out you are pregnant and have not discussed pregnancy with a GP or specialist
• you are being sick in pregnancy — this can make your medicines less effective
• your seizures have changed, for example they happen more often

Call your local emergency number immediately — 999 in the UK and Ireland, 911 in the US and Canada, 000 in Australia, 111 in New Zealand — if someone pregnant:

• has a seizure lasting longer than usual, or longer than 5 minutes if you do not know their usual length
• does not recover as usual afterwards, or has another seizure without recovering

The NHS adds: do not drive yourself to the emergency department.

Birth

The RCOG says epilepsy on its own is not a reason to give birth early, and does not require a planned caesarean or induction: "Most women with epilepsy are able to have a vaginal birth." You will usually be advised to give birth in a consultant-led unit with a special care baby unit.

Bring your medication in and keep taking it as normal during labour. On pain relief, the RCOG says gas and air, TENS, an epidural and injections of a strong painkiller such as diamorphine are all suitable, but that pethidine is not recommended "because in high doses it has been linked with seizures."

After the birth

The RCOG warns that seizures may increase after birth because of tiredness, stress and anxiety, and that missed doses are very common in the newborn period — some people set phone alarms. If your dose was increased in pregnancy, you may be able to return to your previous dose, and the plan for that should be agreed before the birth.

Your baby will be offered vitamin K, because some antiseizure medicines can lower vitamin K levels further in a newborn.

The RCOG lists safety measures your midwife and epilepsy nurse should discuss: getting plenty of help and rest, using very shallow baby baths, nursing your baby on the floor, and laying your baby down if you get a warning aura.

On feeding, the RCOG is clear: "Epilepsy medication can pass into breast milk but the amount is usually so small that it is not harmful. Breastfeeding is considered safe even if you are taking epilepsy medication." The NHS says the same, and adds that you should check with your specialist about your particular medicine.

Detailed UK clinical practice follows the RCOG's Green-top Guideline No. 68 on epilepsy in pregnancy, alongside NICE NG217. Epilepsy Action and the Epilepsy Society both run helplines if you want to talk it through with someone before your next appointment.