Living with epilepsy is impacted by various factors related to gender and reproductive issues, including birth control, hormones, sexual relationships, fertility and pregnancy. Children of men with epilepsy are at a slightly higher risk than the general population for developing epilepsy. Self-esteem and the ability to form relationships can also play a part in epilepsy self-management, as can access to gender affirming healthcare. To learn more, click on the topics listed below.
There are many choices available to women with epilepsy for effective birth control (also called contraceptives). Hormone-based oral contraceptives (called OCs or “the pill”) are used most often to prevent pregnancy. However, there are some important points to consider. AEDs that increase the ability of the liver to break down hormones (called enzyme inducing AEDs) can increase the risk for the contraceptive not working. The result can be an unintended pregnancy. Although lamotrigine (Lamictal) does not affect how well the birth control works, the level of lamotrigine can be lowered by OCs. This could lead to breakthrough seizures or a change in side effects. There are some longer-acting forms of birth control than OC or pills to prevent pregnancy. (Learn more)
Sex hormones can influence the excitability of nerve cells in the brain and thus influence seizure control. Estrogen can excite brain cells and can make seizures more likely to happen. In contrast, natural progesterone breaks down into a substance that can inhibit or prevent seizures in some women. Hormones generally do not cause seizures but can influence if or when they happen. Some women with epilepsy experience changes in their seizure patterns at times of hormonal fluctuations. For example, puberty is a time when hormones are stimulating body changes. It is not unusual for certain kinds of seizures to disappear at puberty, while other seizure disorders may start at this time. Many women with epilepsy see changes in the number or the pattern of their seizures around the time of ovulation (mid-cycle), or just before and at the beginning of their menstrual periods. It is important to understand that people differ in their hormonal sensitivity. If hormones are found to affect a person’s seizures, there may be a role for hormones in epilepsy treatment. For both women and men, identifying hormonal influences on seizure patterns may lead to a better understanding of treatment options for seizure control. Women should keep a calendar of their menstrual cycles and of days they have seizures. (Learn more)
All the complex causes for sexual problems, especially how they may be related to epilepsy, are not yet fully understood. For example, some people have a low level of sexual desire; others have difficulty becoming sexually aroused; or intercourse can be painful for some women. It is not unusual for people to have problems with sexual performance at times, and people with epilepsy are no exception. However, people with complex partial seizures, particularly when the seizures start in the temporal lobe, seem to have more sexual problems. Acceptance of oneself and one’s epilepsy are important in developing an intimate relationship with another person. Perhaps an individual fears having a seizure during intercourse. Seizures often involve the same areas of the brain that are important to maintaining healthy sexual function, and some of the sensations felt during intimacy can be similar to those experienced during auras or simple partial seizures. Talking about sexual difficulties with a trained therapist can be very helpful. (Learn more)
Epilepsy itself does not interfere with the ability to become pregnant. With the right planning, supplemental vitamin use, and medication adjustments prior to pregnancy, the odds of an individual with epilepsy having a healthy pregnancy and a healthy child are similar to an individual without a chronic medical condition. There are some potential risks associated with the pregnancy of an epileptic individual. Major congenital malformations (also known as birth defects) may develop as a result of the antiseizure medication an individual may be on while pregnant. The most common types of birth defects reported with antiseizure medications include cleft lip or cleft palate, heart problems, abnormal spinal cord development (spina bifida), urogenital defects, and limb-skeletal defects. Some antiseizure medications, particularly valproate, are known to increase the risk of having a child with birth defects and/or neurodevelopmental problems, including learning disabilities, general intellectual disabilities, and autism spectrum disorder. The best course of action for an expectant individual with epilepsy is to work with a team of providers that includes their neurologist and their obstetrician to learn about any special risks associated with their epilepsy and the medications they may be taking. (Learn more)
People with epilepsy have lower rates of reproduction compared to the general population, but men with epilepsy seem to be impacted even more than women. Sexual dysfunction in men with epilepsy, including decreased interest in sex (desire/libido), decreased physical arousal (erectile dysfunction), and decreased ability to achieve orgasm all may play a part in the lower reproductive rates. Decreased fertility in men with epilepsy due to lower sperm count or impaired sperm motility and co-morbid depression, anxiety, and lower self-esteem can also play a role. Men with epilepsy should speak to their primary care doctor or neurologist if they have any concerns about their sexual functioning or plans for fatherhood. (Learn more)
Children of men with epilepsy are at a slightly higher risk than the general population for developing epilepsy as well. Studies show that children of men with epilepsy have a 2.4% risk of developing epilepsy, as opposed to children in the general population, whose risk is estimated at 1%. If both parents have epilepsy, the risk that their children will develop epilepsy increases, although estimates vary widely. Some statistics say the risk of developing epilepsy when both parents have it is about 5%, while others place it closer to 15 or 20%. If an individual’s epilepsy is well controlled, they face very few restrictions on caring for a child. However, if one’s epilepsy causes impaired awareness and limited control of movement, they need to take special precautions when caring for a baby or a young child. Sleep deprivation and new parenthood often go hand-in-hand. Not getting enough sleep is a common seizure trigger. Stress that is induced by sleep deprivation and the excitement and life changes of a new baby can aggravate seizures. Sleep deprivation and family schedule changes may also lead to missed medications. Be aware of these potential problems and work with a health care team to develop a plan to reduce their impact. (Learn more)
There is no evidence that epilepsy causes low self-esteem. However, some research suggests that people with epilepsy may have difficulty forming relationships with others, possibly due to damage to parts of the brain that are important in social functioning. Low self-esteem can result in general dissatisfaction. It can also harm specific aspects of life. For instance, low self-esteem may contribute to sexual problems, such as decreased libido (sexual desire). Low self-esteem may also be partially responsible for under-employment among men living with epilepsy. Men with epilepsy who suffer from low self-esteem and anxiety may benefit by learning and practicing relaxation techniques and mindfulness. Examples of these techniques include paced diaphragmatic breathing, aromatherapy, tai chi, progressive muscle relaxation, and meditation. Regular exercise also provides physical and emotional benefits for people living with epilepsy. (Learn more)
Gender affirming health care involves hormonal and other treatments to match a person’s physical/physiological sex characteristics with their identified gender. Many antiepileptic drugs (also known as AEDs) have potential interactions with hormone treatments, so therapeutic adjustments may be necessary. Levels of the AED lamotrigine may be decreased by estrogen treatments, so monitoring of levels is needed in trans women. Cessation of menstruation in trans men may lead to improved seizure control if seizures had a catamenial pattern (associated with menstruation) prior to transition. Estrogen treatment may increase seizure frequency in trans women, requiring AED adjustment.
Transgender individuals have higher rates of depression and suicidal ideation than the general population, so antidepressant medications are often prescribed. Some antidepressant medications, such as bupropion, can make seizures more likely. Interactions between some AEDs and antidepressant medications need to be considered and should be discussed with a healthcare provider.
Transgender individuals also have higher rates of HIV than the general population. Certain AEDs also decrease the levels of antiretroviral medications, making them less effective. These AEDs include carbamazepine, phenytoin, primidone, and phenobarbital. Some antiretroviral medications can decrease levels of lamotrigine, so monitoring of levels of that AED may be necessary. Conversations should be had with a healthcare provider about how specific antiseizure medications may impact specific antiretroviral medications. (Learn more)