I’m thinking of becoming pregnant
If you have epilepsy and are planning to become pregnant, it’s a good idea to get some advice from a medical professional. This might be an epilepsy specialist, or nurse with a particular interest in epilepsy and pregnancy. And this advice might be called pre-conception counselling. Your family doctor can refer you for pre-conception counselling.
Why do I need specialist advice?
You should have specialist advice because your epilepsy and epilepsy medicines may slightly increase your risk of having a baby with a birth problem. The risk varies, depending on the type, dose and epilepsy medicines you take, and getting specialist advice might reduce your risk.
Epilepsy Action has more information about planning a pregnancy.
Taking folic acid, before and during pregnancy, reduces the risk of a baby having spina bifida (a fault in the development of the spine and surrounding bones). If you take epilepsy medicine, medical professionals advise that you take a 5 milligrams dose of folic acid. This is instead of the 400 micrograms of folic acid that most women are advised to take. You will need a prescription for this dose.
I’m already pregnant
If you’re already pregnant, don’t panic – and don’t stop taking your epilepsy medicines. This could cause you to have more seizures than usual, more severe seizures or, in rare circumstances, even die. Speak to your family doctor, epilepsy specialist or nurse as soon as possible. They will be able to tell you what to do next.
Epilepsy medicines and birth problems
Although your baby has a very good chance of not having any birth problems, epilepsy medicines can sometimes cause some specific problems. These are:
- Minor congenital abnormalities
- Major congenital abnormalities
- Neurodevelopment problems
These are explained below.
Minor congenital abnormalities
Minor congenital abnormalities are birth problems that don’t usually need treating. They include small fingers, small toenails and facial abnormalities, such as widespread eyes. Any woman can have a baby with minor congenital abnormalities. The risk seems to be greatest during the first 3 months of pregnancy.
Major congenital abnormalities
Major congenital abnormalities are birth problems that need treating. They include things like spina bifida (a fault in the development of the spine and surrounding bones), a hole in the heart, or a cleft palate (where the roof of the mouth is not correctly joined).
In women who don’t have epilepsy, around 1 or 2 babies in every 100 will have a major congenital abnormality. In women who have epilepsy, but don’t take epilepsy medicines, around 2 babies in every 100 will have a major congenital abnormality. If you take epilepsy medicines, your risks are higher.
The UK Epilepsy and Pregnancy Register was set up to find out more about having epilepsy and taking epilepsy medicines during pregnancy. The information in the table below is from the register’s findings between 1996 and 2012. It doesn’t have information about every epilepsy medicine available because, at the moment, there isn’t enough information available.
Risks of epilepsy medicines causing major congenital abnormalities
If you take just one epilepsy medicine:
|Epilepsy medicine||Daily dose||Approximate risk||% risk|
|carbamazepine||any||2 to 3 in 100||2.6|
|lamotrigine||any||2 to 3 in 100||2-3|
|levetiracetam||any||2 in 100||2|
|topiramate||any||4 to 5 in 100||4-5|
|below 1,000 mg||6 in 100||6|
|above 1,000 mg||10 in 100||10|
If you take more than one epilepsy medicine:
|Epilepsy medicine||Approximate risk||% risk|
|sodium valproate with any |
other epilepsy medicine see note
|9 in 100||8.9|
|any combination without |
|4 in 100||4.2|
The risk of epilepsy medicines causing your unborn baby to have a major congenital abnormality seems to be greatest during the first 3 months of pregnancy.
Neurodevelopment describes how a child develops skills such as language, communication, and behaviour. If you take sodium valproate during pregnancy, your child has a higher risk of neurodevelopment problems than other children. Neurodevelopment problems have been found to affect between 30 to 40 in 100 babies born to mothers who have been taking sodium valproate during pregnancy.
Neurodevelopmental problems become more obvious over time. So you may not know about these problems until your child is a few years old.
The Medicines and Healthcare Products Regulation Agency (MHRA) have published some more detailed information about sodium valproate. If you are taking sodium valproate, or your doctor is considering prescribing sodium valproate for you, the MHRA advise you to read the Valproate patient guide along with the patient information leaflet. This is because they are advising that, if you are a woman capable of becoming pregnant, your doctor should only prescribe sodium valproate if nothing else works for you.
Sodium valproate may be the only epilepsy medicine that stops your seizures. Don’t stop taking it without advice from your family doctor, epilepsy specialist or nurse.
Finding out more
If you would like more information about the risks of epilepsy medicines in pregnancy, contact the UK Epilepsy and Pregnancy Register:
Freephone: 0800 389 1248
If you would like to see this information with references, visit the Advice and Information references section of our website. See Epilepsy medicines and pregnancy.
Epilepsy Action would like to thank Beth Irwin, epilepsy nurse/midwife, The Royal Hospital, Belfast, for her contribution to this information.
Beth Irwin has no conflict of interest to declare.
This information has been produced under the terms of The Information Standard.
- Updated March 2016To be reviewed March 2019