Specialized Care for Women with Epilepsy

Hormones like estrogen and progesterone fluctuate throughout a woman’s monthly menstrual cycle. “These hormones permeate the brain and regulate the brain’s excitability. Estrogen can increase excitability, and progesterone decreases excitability,” Dr. Parikh said.

Changes in these hormone levels during your period or ovulation can increase seizures. This is called catamenial epilepsy. Dr. Parikh recommends keeping a seizure diary to help determine whether seizures are related to monthly cycles. If so, certain medications may be able to help.

Women with epilepsy need to give extra thought to family planning. Epilepsy medications can make certain contraceptives less effective. At the same time, some birth control measures can affect how your body metabolizes epilepsy medications, increasing the risk of breakthrough seizures. Some birth control options are more effective at preventing pregnancy and can help stabilize hormone levels to reduce catamenial epilepsy seizures. According to Dr. Parikh, it's important to work with an epilepsy provider who is knowledgeable about these interactions and can recommend the right contraceptive for you. At Duke, our epileptologists collaborate with ob-gyn providers who specialize in caring for women with epilepsy.

According to White, many women with epilepsy have been told incorrectly that pregnancy is not ideal for them. “It just isn’t true,” she said. The most important thing you can do is plan ahead. “For women with epilepsy, the safest pregnancies are planned pregnancies.” Here, White and Dr. Parikh dispel more myths about pregnancy, breastfeeding, and epilepsy:

• Are women with epilepsy more likely to have trouble getting pregnant? No. Women with epilepsy are just as likely to get pregnant as women who do not have epilepsy.
• Do anti-seizure medications increase the risk of birth defects? Although the chance of birth defects increases slightly, the risk is still low. More than 90 percent of women with epilepsy have healthy pregnancies.
• Will I have more seizures if I get pregnant? Probably not. Research shows that most women who are seizure-free for nine months before pregnancy usually remain controlled during pregnancy.
• How will my epilepsy care change during my pregnancy? In addition to your regular OB appointments, your epilepsy specialist will see you at least once during each trimester of your pregnancy. You may also need to have bloodwork done monthly to monitor levels of your anti-seizure medications, as these can fluctuate throughout pregnancy. 
• Will I be able to breastfeed safely? Most women who take anti-seizure medications can breastfeed. In fact, the benefits of breastfeeding often outweigh the limited risks associated with medication exposure through breast milk. Talk to your provider about whether your medications are safe for breastfeeding.
• What are my postpartum risks? Women with epilepsy are at a higher risk of experiencing anxiety and depression before, during, and after pregnancy compared to women without epilepsy. It’s important to monitor your mental health and talk to your doctor about it often.
• Will I be able to care for a baby safely? Parents with epilepsy, both women and men, need to take extra caution when caring for children. That means making care decisions like not bathing your child alone, changing your baby’s diaper on the floor instead of a raised surface, and using a stroller with automatic wheel locks.

Since menopause causes hormones to fluctuate, some women may experience a change in their seizure frequency during this time. Women who are considering hormone-replacement therapy should talk to their epileptologist about how it might affect seizures and the anti-seizure medications that they are taking. 

Certain epilepsy medications can make it harder for your body to absorb calcium and vitamin D, which can further increase the risk of bone loss and osteoporosis in women with epilepsy, particularly those experiencing menopause. Dr. Parikh recommends taking calcium and vitamin D supplements and having regular bone scans to monitor bone health.

As a Level 4 Epilepsy Center, Duke provides comprehensive care to women with epilepsy throughout their lives. If needed, your epilepsy provider can coordinate with specialists in family planning, high-risk pregnancies, neonatal medicine, and menopause in addition to epileptologists, surgeons, and support staff like clinical social workers. 

“This kind of coordinated care is really best for the patient,” White said. “We're always learning and growing to incorporate new research and treatments, and that is advantageous to our patients.”