Fertility and planning a baby
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What do we know about epilepsy and pregnancy?
Epilepsy is one of the common medical conditions that affects people of childbearing age. Most people with epilepsy have healthy pregnancies and give birth to healthy babies. But there are some known risks with epilepsy and taking epilepsy medicines, that it’s important to know about if you’re planning a baby.
Some people notice changes to their seizures during pregnancy. And research has shown that some epilepsy medicines can increase your risk of having a baby with a birth problem or issues with learning and development. The risks vary depending on:
- Your type of epilepsy
- How well controlled your seizures were before pregnancy
- Which medicines you take
- What dose of medicines you take
There’s also some evidence that there could be a small risk of pregnancy and birth complications for some people with epilepsy. Getting specialist support at the right time, especially if you are at risk of an unplanned pregnancy, may help to reduce these risks. If you are already pregnant contact your GP as soon as possible.
Epilepsy Action has more information about epilepsy medicines and risks in pregnancy and sodium valproate medicines and risks in pregnancy.
Medical professionals advise you have pre-conception counselling before you become pregnant. This is to have the best chance of having a healthy pregnancy.
What is pre-conception counselling?
Pre-conception counselling happens before you get pregnant. You will talk to a doctor or nurse who knows about pregnancy and epilepsy. The aim is to review your epilepsy and your epilepsy medicines.
Pre-conception counselling also gives you time to ask questions about epilepsy and pregnancy. Being more informed means you are better prepared for pregnancy and making decisions about your treatment.
The doctor or nurse might suggest you change your epilepsy medicine to one that carries a lower risk, before you get pregnant. Or they might change it to try to get your seizures under better control. Their advice will depend on your circumstances, and how you feel about making any changes.
How do I get pre-conception counselling?
You can ask your epilepsy specialist or GP to arrange pre-conception counselling for you at any age. It’s especially important if you are thinking of becoming pregnant or if there’s any chance that you could get pregnant.
Do I need folic acid?
Folic acid is also known as vitamin B9. It helps to make healthy red blood cells. It is recommended that all people take folic acid before and during pregnancy. This is to reduce the risk of having a baby with spina bifida.
For people without epilepsy, or not taking epilepsy medicines, the usual dose is 400 micrograms. For women taking epilepsy medicines, the advised dose is 5000 micrograms (5 milligrams). To get a 5 milligrams dose you will need a prescription from your GP.
When should I start taking folic acid?
If you take epilepsy medicine, it is recommended you take 5 milligrams of folic acid daily if there is any chance you could become pregnant. You will usually need to continue taking it for the first 3 months of your pregnancy.
Will folic acid affect my epilepsy medicine?
If you take phenytoin, phenobarbital or primidone, folic acid could affect how well those medicines work. This could cause you to have a seizure. Speak to your doctor before starting folic acid so they can monitor this and adjust the dose of your medicines if needed.
UK epilepsy and pregnancy register
The aim of the register is to learn about the safest treatments for people who are pregnant and have epilepsy. It’s a voluntary register that could help others in the future. It’s also to collect information on the health of babies after they are born.
If you have epilepsy and are pregnant, the register would be delighted to hear from you: epilepsyandpregnancy.co.uk, or call 0800 389 1248.
Sodium valproate risks in pregnancy
Epilepsy medicines and pregnancy
Jo's experience
“My experience of the NHS has been excellent, particularly when planning for a baby and during my pregnancy. I can’t praise the staff who looked after us during pregnancy enough, thanks to them we have a healthy baby boy!”
Will I have any fertility problems?
There isn’t enough research into epilepsy and fertility yet. There have been some studies which have looked at whether there is an increased risk of fertility problems if you have epilepsy. But these studies have often found different results.
One study found that unless you already have a known fertility problem, you should have the same chance of getting pregnant as someone without epilepsy. This study did not include women who already had a known fertility problem, such as Polycystic Ovary Syndrome (PCOS).
Other studies have found epilepsy and epilepsy medicines can cause certain health problems, which could affect fertility and make it harder for some people to get pregnant.
Here we explain some of the problems you might have with epilepsy that could affect your fertility.
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Period problems
Epilepsy and epilepsy medicines can affect your periods and monthly (menstrual) cycle. Some people with epilepsy find that their periods don’t follow a pattern or happen very rarely. This can make it difficult to work out when you are most likely to have a chance of getting pregnant.
If your periods don’t follow a pattern, or are very heavy, it’s a good idea to talk to your GP. They might give you advice or suggest you have some blood tests. If they think your epilepsy or epilepsy medicine could be affecting your periods, they might refer you to an epilepsy specialist or a gynaecologist.
Epilepsy Action has more information about periods and catamenial epilepsy.
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Polycystic ovary syndrome (PCOS)
Another cause of irregular periods is polycystic ovary syndrome (PCOS). Around 1 in 10 women have PCOS.
A doctor may diagnose you with PCOS if you have 2 of these 3 symptoms:
- Irregular periods – this may mean your ovaries aren’t regularly releasing an egg (ovulation)
- Hight levels of male hormones
- Polycystic ovaries – this happens when eggs in the ovaries aren’t released. It results in fluid-filled sacs surrounding the eggs. These are harmless and are not actually cysts
You might also have other symptoms with PCOS including hair loss, weight gain, acne or extra hair growing on your face or body.
PCOS can affect people with or without epilepsy. But studies suggest it’s more common in people with epilepsy, who are taking epilepsy medicines. Particularly if they take sodium valproate. If you think that you might have PCOS, talk to your doctor. With lifestyle changes and treatment, most people with PCOS can get pregnant.
You might be worried that your epilepsy medicine is causing you to have PCOS. But it’s very important that you don’t stop taking it without speaking to your doctor. If you suddenly stop taking epilepsy medicine, it could cause you to have more seizures. Or they might become more severe.
The NHS website has more information about polycystic ovary syndrome.
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Will epilepsy affect my sperm?
Some research suggests that epilepsy may affect sperm in some people.
You may be taking an epilepsy medicine that can reduce the amount of sperm you produce or affect the quality of it. Carbamazepine, phenytoin and sodium valproate may all have this effect. There’s a small amount of evidence that levetiracetam may also affect the number and quality of sperm you produce.
Your epilepsy or epilepsy medicines may have caused you to have lower testosterone levels than usual. This could make you less fertile.
If your doctor thinks that your epilepsy or epilepsy medicines are a possible cause of fertility problems, they’ll usually refer you to an epilepsy specialist. The specialist may make changes to your epilepsy medicine, to see if that helps.
What treatment is there for fertility problems?
Speak to your GP if you’ve not been able to get pregnant after a year of trying. If you’re over 36 or you’re already aware you may have fertility problems, you should see your GP for advice sooner. Your GP can check for common causes of fertility problems for you and your partner and, if needed, suggest treatment.
The treatment you’re offered will depend on what is causing the problem and what’s available in your area.
Treatments include:
- Medicines
- Surgical procedures
- Assisted conception including intrauterine insemination (IUI), in vitro fertilization (IVF), and egg and sperm donation.
Research into success rates of fertility treatments for people with epilepsy is limited. But one study found that for IVF the chances of a live birth for people with epilepsy are similar to the chances of people without epilepsy.
Some fertility treatments use hormone-based drugs to help you get pregnant. Some people with epilepsy have said they have had more seizures than usual while taking hormone-based fertility treatments. Your doctor should consider any possible interactions with your epilepsy medicines. They may make temporary changes to your epilepsy medicines to reduce the risk of hormone treatment affecting your seizures.
The NHS website has more information about fertility problems and treatment, including how to check what treatment there is in your area.
Epilepsy Action has more information about epilepsy, gender and hormones.
Support
IVF – Support – NHS (www.nhs.uk)
Adoption
Some people with epilepsy choose to adopt. If adoption is something you’re thinking about, Epilepsy Action has more information about adoption and epilepsy.
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