Why is International Women with Epilepsy Day important?
International Women with Epilepsy Day was created to raise awareness of the critical gap in our understanding of how epilepsy impacts women and people who were assigned female at birth (AFAB) and the need for more dedicated research. This group has historically been underrepresented in medical research, including epilepsy studies. For many years, clinical trials primarily focused on men and people assigned male at birth (AMAB), with the assumption that findings would apply equally. This assumption overlooked key differences in how conditions like epilepsy can be influenced by hormones, contraception, pregnancy, and menopause. Without dedicated research on women, critical gaps remain in understanding and treating epilepsy.
Epilepsy research leads to better outcomes for pregnant people and their children.
The Maternal Outcomes and Neurodevelopmental Effects of Antiepileptic Drugs (MONEAD) study is a good example of recent efforts to study the intersection between epilepsy care and reproductive health. This prospective observation study examined the impact of epilepsy and antiseizure medications on pregnancy and the neurodevelopment of exposed children. There were many important findings from this study, including that neurodevelopmental outcomes in children exposed to antiseizure medications did not differ from that of control children. This study also found that pregnant people may need higher doses of certain antiseizure medications during pregnancy.
Resources for women with epilepsy
Considerations and Challenges Unique to Women with Epilepsy
Hormones
Estrogen and progesterone can affect seizure activity, making some people more likely to have seizures at certain points in their development or menstrual cycle. Catamenial epilepsy is a type of epilepsy where seizure frequency increases during a person’s menstrual cycle.
Learn more about how hormones impact epilepsy in our Women’s Health: Complex Interactions of Epilepsy, Medications, and Hormones webinar recording.
Family Planning
Some medications can interact with birth control, making it less effective. In addition, certain forms of birth control can decrease the efficacy of some medication. If a woman with epilepsy is sexually active and does not want to get pregnant, she should work with her neurologist to manage seizure control and effectively prevent pregnancy.
Given the known risks of some medications to fetal health and the unknown risk of other medications, planning pregnancy in advance is critical. Effective contraception allows for optimization of seizure control and switching to lower risk medications prior to pregnancy. It is recommended that all people with epilepsy who want to start a family work closely with their care team before conceiving to ensure the best outcome for birthing parents and their babies.
Pregnancy
No two pregnant people with epilepsy are exactly the same, so it is imperative that individuals work very closely with their care team before, during and after pregnancy to ensure the best outcomes. Here are a few of the considerations care teams and patients make:
Seizure Risks During Pregnancy
Seizure frequency can change due to hormonal shifts, sleep disturbances, or altered medication absorption. Uncontrolled seizures can pose risk to the parent and fetus, such as injury or preterm labor. Research has shown that monitoring antiseizure medication levels and adjusting doses of medications is important during pregnancy. With this approach, seizure control is not different from baseline for most pregnant individuals.
Folic Acid and Nutritional Needs
Folic acid has been shown to be beneficial to fetal health and neurodevelopment in the general public. Supplementing folic acid in pregnant individuals with epilepsy also seems to have benefits for the neurodevelopment of their children. It is recommended that all individuals who may become pregnant supplement with at least 0.4mg of folic acid daily in advance of pregnancy.
Medication Usage
Some antiseizure medications (especially valproic acid) are teratogenic, meaning they can increase the risk of fetal malformations. Use of this medication is also associated with decreased IQ and an increased risk of autism spectrum disorders in exposed children. There are still many more medications used for the treatment of epilepsy, pain, headache, and psychiatric conditions that have not been studied in pregnancy at all. There is a critical need for more research in this area.
The North American Antiepileptic Drug Pregnancy Registry is a nonprofit arm of Harvard Medical School that is a great resource for pregnant women and offers opportunities to participate in research on this topic.
Labor and Delivery
Seizures during labor are rare but possible. Healthcare providers may take precautions, such as adjusting medication dosages or planning for a delivery approach that minimizes stress and fatigue.
Postpartum and Breastfeeding
While some medications are expressed in breast milk, research has shown that medication levels in breastfed infants are low for most medications. Studies have also shown that children who breastfed when their mothers were taking antiseizure medications have normal or improved neurodevelopment. Prospective parents with epilepsy should discuss strategies to minimize sleep deprivation with their providers and families. With the proper support, most mothers with epilepsy can successfully breastfeed as long as their peers.
Perimenopause and Menopause
As estrogen and progesterone levels fluctuate and eventually decline following perimenopause and menopause, some people may experience changes in seizure frequency, especially if they have catamenial epilepsy. Women with epilepsy also need to work closely with their care team before starting any treatments designed to manage the symptoms of menopause. In addition, some medications can impact bone health by reducing bone density, even in young people. Since menopause already increases the risk of osteoporosis, women with epilepsy may be at even greater risk for fractures. Additional research on menopause and epilepsy is critical.
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Explore episodes of our Seizing Life podcast, where women share their challenges and victories living with epilepsy.
