Most people with epilepsy can have full social, sexual, and family lives. Often it is more issues of self-esteem, than medical issues, that interfere with this. Ensuring that you are informed and comfortable about epilepsy will go a long way towards ensuring you have a good and healthy social life.
This page discusses various issues related to sexual and reproductive health, including:
- telling partners about epilepsy
- epilepsy and sex
- menstruation and seizures
- birth control
- reproduction and fertility
- pregnancy
Many of these are critical stages in a person’s life and ones in which the epilepsy care team should be consulted. Epilepsy Canada’s web site also offers good information in their sections on "Women and Epilepsy" and "Men and Epilepsy."
Telling partners about epilepsy
It may be a difficult decision to tell someone that you have epilepsy. If your seizures are well controlled, you may only need to reveal this information to certain people at certain stages of a relationship. It is more important to tell someone about epilepsy in cases where your seizures are frequent or dangerous.
It is a good idea to be open about epilepsy, especially in long-term or intimate relationships. Any person you spend a lot of time with alone should know about your epilepsy and what to do in case of a seizure. This can be important for both your personal safety and your self-esteem.
Epilepsy and sex
Epilepsy can have various impacts on sex:
- It can reduce sex drive. This could be caused by hormonal changes due to the epilepsy, anti-epileptic drugs, or low self-esteem.
- It can make sex painful for women. Some women with epilepsy experience dryness of the vagina or painful vaginal spasms during intercourse.
- For men, it can cause difficulty in achieving and maintaining an erection or achieving orgasm.
If you have any problems with sexual function, talk to your doctor and epilepsy care team to find solutions.
Menstruation and seizures
Studies have shown that changes in female hormones before or during menstruation can increase seizure frequency in some women. Seizures around one’s period are referred to as catamenial seizures.
Some women with epilepsy have menstrual disorders such as absence of menstruation, light menstruation, or irregular cycle lengths. Some anti-epileptic drugs, such as valproic acid, contribute to irregular menstruation or absence of menstruation. This usually resolves when the medication is stopped.
Anti-epileptic drugs can sometimes aggravate mood swings associated with the menstrual cycle. Some drugs act as mood stabilizers.
Discuss any menstruation-related issues with your physician and epilepsy care team.
Birth control
In general, women with epilepsy have the same birth control options as other women. However, some anti-epileptic drugs can interact with hormonal birth control methods and increase the risk of an unplanned pregnancy. It is very important that women with epilepsy talk to their doctor and epilepsy care team about the best birth control method.
Some anti-epileptic drugs, including carbamazepine, lamotrigine, oxcarbazepine, phenobarbital, phenytoin, primidone, and topiramate, can interact with hormonal birth control pills, hormone injections, or vaginal rings. This can make the birth control less effective, increase the risk of pregnancy, and cause bleeding. In some cases, this interaction can also change the amount of the anti-epileptic drug in the body.
Other anti-epileptic drugs, including benzodiazepines, gabapentin, levetiracetam, valproate, and vigabatrin, do not appear to interact with hormonal birth control methods.
Women with epilepsy can safely use barrier methods of contraception, including condoms and diaphragms.
Reproduction
When a person with epilepsy thinks about having children, a natural question is whether the child could also have the condition. Some types of epilepsy are inherited and do tend to run in families. There is a higher risk of having a child with epilepsy if:
- one or both parents has epilepsy (the risk is higher if the mother has epilepsy)
- one or both parents has generalized epilepsy
- parents' seizures started early in life
Epilepsy can sometimes skip a generation.
To find out the risk of a prospective child having epilepsy, people with epilepsy can ask the epilepsy care team or their family physician to recommend them for genetic counselling. These specialists would study the person’s medical and family history, possibly request some laboratory tests, and calculate the risk for the person’s baby.
If a woman with epilepsy is considering having a baby, they should speak to their family physician and epilepsy care team about it before conceiving. They can give valuable advice about actions and precautions to take to ensure a safe pregnancy and a healthy baby.
Fertility
A number of studies have found that people with epilepsy seem to have fewer babies than people in the general population. There are probably several reasons for this:
- Social factors: People with epilepsy are less likely to marry and have children than people in the general population. This in turn may be partly related to problems with social development and poor self-esteem. In addition, people with epilepsy may face family or social pressure not to have children.
- Sexual factors: As described above, epilepsy and anti-epileptic drugs can interfere with sexual desire and arousal.
- Physical factors: Epilepsy and anti-epileptic drugs can interfere with fertility.
Women with epilepsy seem to be more likely to develop a condition called polycystic ovary syndrome (PCOS). This condition raises testosterone levels, causes ovarian cysts, and can interfere with menstrual cycles and fertility. It is especially common in women who are taking valproate, and many of the symptoms can be reversed when the drug is stopped. This condition is also quite common in women without epilepsy.
One study looked at ovulation in women with temporal lobe epilepsy, with generalized epilepsy, and without epilepsy. Women with temporal lobe epilepsy were more than three times as likely to have a menstrual cycle in which no egg was released from the ovaries, compared with the other two groups. This could obviously reduce their fertility.
Epilepsy and certain anti-epileptic drugs may also cause problems with fertility in men, including lower testosterone levels and lower sperm count.
People who are experiencing problems with fertility should speak to their doctor, as treatments are available.
Pregnancy and childbirth
Epilepsy can affect pregnancy: both seizures and certain anti-epileptic drugs may harm the developing fetus. Pregnancy can also have an effect on epilepsy. Despite these risks, with expert medical care, over 90% of women with epilepsy can expect a safe pregnancy and a healthy baby.
Before pregnancy
If you are a woman who is planning to have children, you should talk to your general physician and epilepsy care team, preferably before you conceive or at least as soon as you discover you are pregnant. In some areas, there are obstetricians who have a special interest in caring for women with high-risk pregnancies. A family physician or neurologist can refer to this specialist.
The physician and the care team can inform you about any prospective problems and explain what to do to help ensure a safe pregnancy and a healthy child. They will discuss the following:
- the genetics of your epilepsy syndrome and the chances that your baby will also have epilepsy
- the risks and benefits of prenatal screening tests
- care during pregnancy, including general health issues and vitamin supplementation
- the possible effects of anti-epileptic drugs on the baby
- labour and delivery
- breastfeeding
- child care and safety
Seizure control
Ideally, you should have complete seizure control before you become pregnant. Failing this, your seizures should be as well controlled as possible.
About one-third of women with epilepsy have more frequent seizures in pregnancy, for a variety of reasons:
- Their anti-epileptic drugs may not be absorbed into their bodies as well or may be processed more quickly.
- They may have vomiting during pregnancy, and therefore do not take in as much of their anti-epileptic drug as needed.
- They may have trouble sleeping, which can lower the seizure threshold.
If you are having more seizures, discuss this with your doctor. Your medication dose may need to be adjusted from time to time during your pregnancy. Uncontrolled seizures in pregnancy, especially tonic-clonic seizures and status epilepticus, can be very harmful to you and your baby. Tonic-clonic seizures reduce the mother's and baby's oxygen supply and can cause injury or miscarriage. Status epilepticus has been reported to result in the death of the fetus in up to 50% of cases.
Epilepsy, anti-epileptic drugs, and the risk of birth defects
Women with epilepsy are slightly more likely to have a baby with a birth defect than women without epilepsy. Most of this risk seems to be related to anti-epileptic drugs. Birth defects usually happen very early in the pregnancy, even before a woman knows they are pregnant. Certain drugs may increase the risk of:
- a deformity of the face called cleft lip
- a heart condition known as ventricular septal defect
- abnormalities in the development of the central nervous system, called neural tube defects
- minor abnormalities of the face and fingers
It is important to keep these risks in perspective and discuss them with your doctor. When taking a single anti-epileptic drug, the risk of a birth defect is about 3%, only slightly more than would be expected anyway. With valproate, the risk is about 7%. With two or more anti-epileptic drugs, the risk goes up to about 15%.
Because of these potential risks, the American Academy of Neurology recommends that when possible, pregnant women with epilepsy should be treated with one drug only, at the lowest possible dose. Before pregnancy, your doctor may suggest a change in seizure medication, reduction to just one medication, a reduction in the dosage, or even a medication-free trial. During pregnancy, your doctor or epilepsy care team may "monitor" the drug levels in your blood to ensure they are not high enough to harm your baby.
Never stop taking anti-epileptic drugs without first discussing it with your doctor. Stopping your medication could cause you to have more frequent seizures or even status epilepticus, which can harm the unborn baby.
Care during pregnancy
Like all pregnant women, women with epilepsy should follow a healthy lifestyle by eating a balanced diet, exercising, and avoiding smoking and alcohol during pregnancy.
Starting before pregnancy, folic acid should be taken at a dose of 1 mg per day. With some anti-epileptic drugs, women may need to take a higher dose of folic acid.
Pregnant women with epilepsy should be offered a prenatal test called maternal serum alpha-fetoprotein at 15 to 20 weeks, and ultrasound at 16 to 18 weeks of pregnancy, in order to check for neural tube defects.
Finally, women taking certain anti-epileptic drugs should take vitamin K during the last month of pregnancy to guard against hemorrhage in the newborn.
Labour and delivery
With proper care, most women with epilepsy have normal, uneventful pregnancies and deliver healthy babies.
Older studies found that women with epilepsy had a higher risk of complications such as toxemia, pre-eclampsia, hemorrhage, premature labour, caesarean delivery, and low birth weight. However, newer studies have not found a higher risk.
During labour, there is a small (1% to 2%) risk of seizures, so a woman with epilepsy should always have their baby in a hospital. Seizures during labour can be treated by the hospital team.
Once born, your baby should be thoroughly examined and monitored for withdrawal symptoms if you were taking certain anti-epileptic drugs. Your drug dosages may also need to be adjusted after delivery.
A small number of babies have sedation or feeding difficulties after birth, probably as a result of exposure to anti-epileptic drugs. These problems usually wear off within a few days.
Breastfeeding
After you give birth, you are encouraged to breastfeed. Most anti-epileptic drugs do pass into the breast milk, but at such low doses that they are not likely to affect your baby. Tell your baby’s doctor about which medications you are taking while you are breastfeeding, and confirm that it is safe to breastfeed. You can also get information by calling an information service such as Motherisk (www.motherisk.org) or a similar service in your area.
Safety
As a new mother, you may be concerned about safety for yourself and your baby if you have a seizure. There is not very much information about this in the medical literature. However, the risk is probably low if you take sensible precautions and other caregivers know what to do in case of a seizure.
Note that the risk of seizures may be higher after birth because of changing hormone levels, stress, and sleep deprivation. As always, stay in contact with your doctor to address any concerns.