I’m not thinking about getting pregnant

This page contains information for women living with epilepsy who are not considering pregnancy or planning for a baby at present.

What do I need to know about epilepsy and birth control?

There are many choices of contraceptives available to women with epilepsy for effective birth control. Hormone-based oral contraceptives (the pill) are used most often to prevent pregnancy. The most common form of birth control pill contains both estrogen and progesterone, which is called the combination pill. The combination pill prevents pregnancy in the following ways:

• The estrogen stops ovulation (release of the egg during the menstrual cycle)
• The progesterone leads to the production of a thick cervical mucus that interferes with the movement of sperm and its ability to fertilize the egg. It also changes the lining of the uterus making it difficult for a fertilized egg to implant itself.

There are also forms of contraceptives that contain only progesterone.

How ASMs interact with contraceptives

Some anti-seizure medications (ASMs) can affect estrogen and progesterone because of the way they affect the liver. ASMs that cause the liver to break down hormones (known as enzyme-inducing ASMs) can increase the risk of birth control pills failing. The result can be an unintended pregnancy.

There are other birth control choices available that deliver hormones in different ways and usually over a longer time period. Examples include a patch, injections, intrauterine systems (known as the coil), or an implant placed under the skin. There may also be risks of interactions between these forms of contraceptives and ASMs, so it is important to discuss with your doctor what the best birth control option may be for you and your ASM.

What is valproate and why is it a risk for pregnant women?

Valproate is an ASM used to treat epilepsy and bipolar disorder and can be very effective in controlling seizures. However, if a woman with epilepsy becomes pregnant while taking an ASM that contains valproate, their baby is at risk of serious birth defects and developmental disorders. In up to 30-40% of cases where the child has been exposed to valproate in the womb, the child will have serious developmental disorders. Analysis shows that in around 11% of cases, the child will have major congenital malformations. Congenital malformations are abnormalities, either physical or functional, that are present at birth.

While valproate is not suitable for women of childbearing age who could become pregnant, in some instances it may be the only choice where other treatment options have not worked. 

How do I manage the risks of valproate?

Women with epilepsy who are taking an ASM that contains valproate are strongly advised by their healthcare providers to use contraception, even if you are not currently sexually active, unless your doctor believes that there are compelling reasons for assuming there is no risk of pregnancy.

If you’re taking valproate and you become pregnant, do not stop taking your medicine without talking to your doctor first. This is because your symptoms may get worse.

Research on valproate and other ASMs and pregnancy is ongoing and, and women with epilepsy should regularly ask their healthcare providers for the latest advice on the most appropriate ASM for them.

Does it matter that my periods aren’t regular?

Having an irregular menstrual cycle may make hormonal birth control more complicated. Irregular cycles tend to mean that hormones are out of balance in some way. It is important for your doctor to know if your periods are irregular so that they can help you choose the best method of birth control. It may be necessary to consult with an endocrinologist, a doctor who specializes in diagnosing and treating hormonal problems, in order to find the best option.

Are there any warning signals if my contraception is not working?

Breakthrough bleeding (bleeding when you are not on your period) while you’re on hormonal contraception could be a sign that you are ovulating and you could become pregnant.

If you are using the combination pill, bleeding at any time other than when you take your monthly break or placebo pill may indicate that the pills are not working. If unexpected bleeding occurs, you should talk with your doctor to find an additional form of contraception such as a diaphragm, spermicidal vaginal cream, or condom to avoid an unplanned pregnancy.

What if I get pregnant by accident?

If you do experience an accidental pregnancy, it is very important that you do not suddenly stop taking your ASMs. Always seek medical advice before making any changes to medications prescribed for you.

Abruptly stopping ASMs can result in a return of seizures, which might be stronger than previously experienced, and it may be difficult to regain seizure control. This could increase the risk of status epilepticus (when seizures are over 5 minutes long, or occur very close together and the individual doesn’t recover consciousness between seizures), and sudden unexpected death in epilepsy (SUDEP).

Catamenial epilepsy is a phenomenon in certain types of epilepsy in which seizures happen more often at certain points of the menstrual cycle.

If you think that your menstrual cycle might be affecting your seizures, you can keep a diary that tracks both your seizures and your menstrual cycle for two or three cycles. If a medical review of the seizure/menstruation diary reveals an increase in seizure frequency during one phase of the menstrual cycle, catamenial epilepsy will be suspected as the cause. Points to note:

• Catamenial epilepsy can occur at any phase of the menstrual cycle.
  • For some people, seizure frequency increases just before menstruation or during the first few days of bleeding, which is thought to be caused by the sudden drop in progesterone at this time. 
  • For others, it is at the time of ovulation (mid-cycle) that seizure frequency increases. In this case, it is believed that the rapid rise in estrogen levels is the cause.
  • Sometimes it is the mid- to late-cycle that is the period of increased seizure frequency. This type of catamenial epilepsy is more commonly observed in women who do not ovulate regularly, which may be due to certain hormonal disorders.
• Neurologists now recognize that changes in seizure frequency can happen in parallel with the menstrual cycle, and new ways of combatting these changes are being identified. 
• In general, women with epilepsy have benefited in recent decades from greater understanding of the disorder; better diagnostic tools; greater awareness of special issues such as birth control, pregnancy, sexual function, and menopause; and attempts to formulate individualized, safe approaches to these issues for each woman. More women also are being included in the testing of new medications and other treatments, because what works for a man may not work the same way for a woman.

It is not uncommon for people to have issues around sexual performance at times; people with epilepsy are no exception. Studies have shown that up to one third of women with epilepsy have problems with sex, reporting low interest in sex, difficulties in being able to reach orgasm, or painful sex due to vaginal dryness or vaginal spasms. We do not yet fully understand all the complex causes for sexual problems, especially how they may be related to epilepsy. 

The adverse cosmetic effects that some ASMs cause can lead to low self-esteem and make women with epilepsy feel sexually unattractive and reduce sexual desire. So, it is important to accept yourself as you are and come to terms with your epilepsy so that you are empowered in developing an intimate relationship with a partner.  

Any ASM can cause sexual difficulties but, while you may find that one medication causes you problems in this arena, it does not mean that the situation will be the same with another ASM. Should you have a problem, ask your doctor if you could try a different seizure medication if you believe the medication you are on is the cause of a sexual problem. 

Having a seizure during sex is a real fear for some people with epilepsy and this is particularly the case for those people whose seizures are triggered by excitement or physical activity. However, for most people with epilepsy the likelihood of having a seizure during sex is no higher than at any other time. Nevertheless, talking with your partner about your fears and explaining what they need to do should you have a seizure during sex is important in helping you both to handle this fear.

Epilepsy can have effects on sex, and sex has effects on epilepsy. Many people with well controlled epilepsy enjoy a satisfying sex life. Sex can release stress, and help relax people, thereby reducing seizure frequency. When seizures are under control, people seem to have improved sexual desire and few problems with arousal so don’t ignore a problem when a solution could be close at hand. You may feel embarrassed in talking with your doctor about any sexual problems but it is important to speak openly so that your doctor can understand your problem and help you overcome them.

You could also consider seeking the help of a trained therapist and, remember, that depression, anxiety, tiredness, and stress are other causes of sexual problems.

• Your seizure type and the risks that are associated with your seizures. It’s important to keep a note of your seizures – when they occur and what might have been a trigger. There are a number of seizure diary apps that can help with this as well as wearables that are relatively new to the market.
• Whether you experience seizures at specific times of your menstrual cycle.
• If you are having problems with sexual relations such as a low sexual drive, check with your doctor to see if this might be caused by your anti-seizure medication.
• Know the importance of careful pregnancy planning and use of folate (folic acid) even if you are not planning to become pregnant.

Women with epilepsy should be mindful of pregnancy risks and prepare accordingly, regardless of their decision on having children.

• Talk to your trusted healthcare practitioner about birth control.
• Discuss the pros and cons of different types of contraception and the possible drug–drug interactions: some ASMs can lower the efficacy of hormonal contraception, and some contraceptives can lower ASM blood concentrations (e.g. lamotrigine).
• You should know that a healthy pregnancy is possible, but it should be planned to ensure it is as safe as possible.
• Pregnancy should be planned (preferably six months to one year before pregnancy). This time is needed to find the most effective and safest drug, one that reduces or eliminates seizures while minimizing the risk to the fetus.
• ASMs, but also epileptic seizures, can have a negative effect for the child during pregnancy.
• Any medication may pose a risk of fetal anomalies (a problem with the baby’s body or development before birth), which can occur at a very early stage of the child’s development when the woman usually does not know she is pregnant yet – that’s why planning is so important.