starting a family (preconception)
If you have epilepsy it doesn’t necessarily mean that starting a family will be any more difficult for you than for anyone else. However, it may mean that you have a few more things to consider before, during and after your pregnancy.
Many people with epilepsy have children and a normal family life. Having epilepsy doesn’t usually make it harder for a woman to get pregnant. However, anxieties around having epilepsy, taking medication and the possibility of seizures can all affect how you may feel about trying to start a family.
Certain anti-epileptic drugs (AEDs) may reduce the production of sperm for some men, which could lower a man's fertility.
Some women with epilepsy have irregular periods or a condition called Polycystic Ovary Syndrome (PCOS). PCOS is more common in women who put on weight, and some AEDs have weight gain as a possible side effect. Verity (opens new window) is a UK charity for women who are affected by PCOS.
Reduced sperm production and PCOS are treatable but they can make becoming pregnant more difficult.
Although you may be concerned that AEDs might affect your chances of becoming pregnant, it is important not to stop taking AEDs suddenly and without the medical guidance of your neurologist or GP.
Some people with epilepsy have a low sex drive. Some men say they struggle to get an erection. Low sex drive and problems with arousal can happen for a number of different reasons including anxiety, depression, or the side effects of some AEDs.
Both these problems can be more common for people that have complex focal seizures in the temporal lobe, as this area of the brain is related to sex drive. These problems can make it difficult for a woman to become pregnant. If you are concerned about your sex drive or sexual response you can ask your doctor for advice.
Can my child inherit epilepsy?
Most parents with epilepsy do not have children with epilepsy, and the chances of inheriting epilepsy are generally low. The risk for any child to develop epilepsy by the age of 20 is around 1% (1 in 100), and the risk may increase to around 2 to 5 in 100 (2 -5%) for most children of parents with epilepsy.
However, the chances of your child inheriting epilepsy will vary, due to various factors. These factors include: whether your epilepsy has a genetic cause, what type of epilepsy you have, at what age it started, and whether your partner or another child of yours has epilepsy. Your neurologist may be able to give you more information about your epilepsy.
Epilepsy can be a symptom of an inherited medical condition, passed from parent to child. These include the rare conditions tuberous sclerosis and neurofibromatosis. Another genetic factor is your 'seizure threshold'.
A seizure threshold is our brain’s natural resistance to seizures. This threshold is part of our genetic make-up. As we all have a seizure threshold, any of us can have a seizure under certain circumstances.
If a child inherits a low seizure threshold they are more likely to start having seizures. If they inherit a high seizure threshold then seizures are less likely to start unless an outside factor happens, for example a severe head injury.
If you are thinking of starting a family it is essential to talk to your neurologist about planning your epilepsy treatment for your pregnancy, and for when your baby arrives. It is best to do this before you become pregnant. You may have questions about the type of medication you take, the dose, how being pregnant could affect your seizures and how seizures could affect your unborn baby. Because women with epilepsy have a slightly higher risk of complications than women who don't have epilepsy, forward planning can help keep these risks to a minimum.
Because of the possible effects of AEDs on an unborn baby, having your AEDs reviewed before you get pregnant can help you and your neurologist to make sure that you are taking the most appropriate AED and at the most suitable dose during your pregnancy.
If you have seizures, you are likely to be advised to keep taking your AEDs throughout your pregnancy. Your doctor may suggest adjusting your AEDs so you take the lowest possible dose that will still control your seizures. However, some AEDs are used up more quickly in the body during pregnancy, so the dose may need to be increased during your pregnancy to keep your seizures under control. Your doctor might suggest a change to the type of AEDs that you take, as some AEDs can be more risky to unborn babies than others. See our information about sodium valproate.
Some women prefer not to take AEDs during their pregnancy and may want to discuss this option with their neurologist. If you have seizures during pregnancy there is a risk of injury to yourself and your baby. This risk could be higher (depending on the type and frequency of seizures you have) than the risk of the AEDs affecting your baby.
If you have been seizure-free for two or three years, your doctor might suggest slowly stopping your AEDs before you try for a baby. However, if your AEDs are stopped there is a risk that your seizures could start again.
Having seizures again could affect your home or work life, and if you are currently driving and have a seizure, you will need to stop driving and tell the DVLA. How long you will need to stop driving for may depend on the number of seizures you have had. See the driving regulations for epilepsy for more information.
Making decisions about your medication is not always easy and preconception counselling can give you the chance to ask any specific questions or talk about any concerns you have.
If I'm already pregnant
If you become pregnant without having the chance to have some preconception counselling, it is recommended that you:
- keep taking your AEDs as normal
- ask your doctor to prescribe folic acid supplements of 5mg. Taking folic acid during the early stages of pregnancy may help to reduce the risk of your baby developing conditions such as spina bifida
- make an appointment to see your neurologist as soon as possible.
See more about pregnancy and epilepsy.
Taken from our Pregnancy and parenting leaflet. Order this leaflet from our online shop as part of our 'first five free' offer.