Neurology - Preconception Counselling for people with Epilepsy

Planning a pregnancy with Epilepsy

What you need to know

If you have epilepsy and are thinking about having a baby, it’s important to plan ahead. This leaflet will help you understand how to prepare safely for pregnancy, what to expect if you are pregnant, and where to find support.

What is preconception counselling?

Preconception counselling means having a talk with your doctor before you try to get pregnant. It’s a chance to make sure any medical conditions like epilepsy are controlled as well as possible for a healthy pregnancy and baby.

When should I have preconception counselling?

• You should ask for a preconception counselling appointment before trying to get pregnant
• Half of pregnancies in women with epilepsy are unplanned - so avoiding unplanned pregnancy with reliable contraception is important (see below)
• If unplanned pregnancy occurs, please contact your GP, neurologist, Epilepsy team for advice and guidance

What will be discussed at my appointment?

1.    Review of your Epilepsy and medications

• Your doctor may review your seizure type and treatment
• For most women, it is much safer for them and their baby to continue antiseizure medication in pregnancy. You should never stop taking it without discussion
• The goal is to use the lowest effective dose of the safest medication

2.    Risks of medication during pregnancy

• Some epilepsy medicines (especially valproate, topiramate, carbamazepine, and phenobarbital) increase the risk of birth defects and neurodevelopment. For newer medication, the risk is not known
• Other medicines (like lamotrigine and levetiracetam) are considered lower risk
• Your epilepsy specialist team will help weigh the risks and benefits of taking antiseizure medication
• Pregnancy can reduce the effectiveness of some medication, and a baseline blood level may be taken prior to pregnancy levels

3.    Risks from seizures

• Seizures, especially tonic-clonic ones (stiffening and jerking of your limbs, loss of awareness of your surrounding and slow recovery), can be dangerous during pregnancy
• Keeping seizures under control is very important - don’t stop medication without advice
• Risk of SUDEP (Sudden Unexpected Death in People with Epilepsy) can occur if medications are stopped suddenly without advice or if epilepsy is poorly controlled

Folic Acid

• Women with epilepsy should take 5mg folic acid daily starting before pregnancy and continuing through the first trimester
• This may help reduce the risk of neural tube defects. Neural tube defects are a problem with the way a baby’s brain, spine, or spinal cord develops very early in pregnancy

During pregnancy

• You’ll have extra check-ups with both your obstetrician and epilepsy team
• Medications may need to be adjusted
• You may be offered regular blood tests such as anti-epileptic medication monitoring
• You’ll usually have more ultrasound scans to monitor your baby’s growth

Will my baby have epilepsy?

• The risk is slightly higher if you have epilepsy, but most babies are unaffected
• Your team may suggest genetic counselling if your epilepsy has a known inherited cause

Contraception and epilepsy

It is very important to avoid unplanned pregnancy by using effective contraception

• Talk to your doctor about the best contraception for you
• Some epilepsy medications can affect how well contraceptives work

Key points

• Most women with epilepsy have healthy pregnancies and babies
• Don’t stop your medication without talking to your doctor
• Start high-dose folic acid before pregnancy
• Regular check-ups during pregnancy can help manage risks
• Preconception counselling gives you the tools to make informed, safe choices
• Let your epilepsy team know if you become pregnant

Questions or concerns?

Speak to your:
•    GP
•    Neurologist or epilepsy specialist
•    Epilepsy specialist nurse
•    Obstetrician
•    Midwife

Further information

Epilepsy Action - www.womenwithepilepsy.co.uk

BUMPS  -  https://www.medicinesinpregnancy.org/