Understanding the Unique Challenges Women with Epilepsy Face

Tuesday, November 26, 2024

More than one million American women of childbearing age have epilepsy. For these women, in addition to focusing on seizure control, they also have to take into consideration additional complexities tied to hormonal changes, reproductive health, and even bone density. There’s growing recognition that the standard treatment approach for Epilepsy needs to be tailored to women’s needs.

As a leading Level 4 Epilepsy Center, UI Health is committed to providing personalized care, considering a patient’s health and lifestyle goals, and supporting women throughout all stages of life.

Anna Serafini, MD, is the director of Women with Epilepsy Program at UI Health. She specializes in treating women with epilepsy, and her clinic highlights why it's critical to seek care that understands and adapts to the distinct needs of women living with epilepsy.

  1. Hormone-Related Seizures

    About half of women with epilepsy report seizure patterns around the time of their menstrual cycle. For example, catamenial seizures— seizures that spike around the menstrual cycle—can be overlooked without specialized care.

    While epilepsy treatment often focuses on controlling seizures, girls' and women’s care needs to account for how hormones like estrogen and progesterone influence brain activity.

    “Understanding how hormones interact with the brain to influence seizures is crucial for effective management,” says Dr. Serafini. “Tracking your cycle can reveal patterns that help us tailor treatment plans, ensuring women receive care that aligns with their unique hormonal changes.”

    Specialized treatment plans that epileptologists can develop with patients include anti-epileptic medications, birth control options, implanted devices, or even surgery.

  2. Contraception & Epilepsy

    Contraception requires careful consideration for women with epilepsy, as certain anti-seizure medications (ASMs) can interact with hormonal birth control, affecting its effectiveness. Similarly, some contraceptives can alter the way epilepsy medications are metabolized, leading to breakthrough seizures.

    “Through collaboration and coordinated care with UI Health OB-GYN providers, our Epilepsy team ensures that each woman’s contraceptive plan supports both her reproductive and epilepsy needs. Our goal is to ensure each patient feels safe, supported, and empowered in their family planning options”, says Dr. Serafini.

    In addition to the interactions between ASMs and birth control, estrogen has been shown to increase seizure activity in some women with epilepsy, whereas progesterone may have anti-seizure effects. Some ASMs also present higher risks for birth defects in women who are planning a pregnancy. These types of considerations are evaluated for each individual woman. At UI Health, epileptologists and gynecologists work together to identify the best birth control option for each patient.

  3. Family Planning for Women with Epilepsy

    Women with epilepsy are faced with a lot of misconceptions about pregnancy risks and fertility. While the journey of pregnancy and postpartum recovery brings unique challenges, and the lack of specialized support can leave women feeling unsafe or uncertain, women with epilepsy are able to have healthy pregnancies and healthy babies.

    For some women, it is difficult to predict how pregnancy will affect epilepsy. This includes the risk of potentially having more seizures during their pregnancy, how medication increases the risks of birth defects, and being at higher risk for other complications. Epileptologists at UI Health work together with patients in the Women with Epilepsy Clinic to assess everyone’s unique condition and plan for the proper care before, during, and after their pregnancy.

    “It is crucial for women with epilepsy to plan their pregnancies to optimize seizure control and ensure the safest outcomes,” says Dr. Serafini. “Coordination between epileptologists and OB-GYNs allows us to make necessary adjustments and monitor our patients’ health closely throughout their pregnancy.” At UI Health, pregnant patients with epilepsy receive customized plans that balance seizure control with fetal health, supported by regular monitoring and guidance through each trimester.

  4. Protecting Bone Health in Women with Epilepsy

    Certain epilepsy medications can reduce the body’s ability to absorb calcium and vitamin D, increasing the risk of bone loss and osteoporosis. This risk is exceptionally high for women during menopause. Dr. Serafini advises regular bone scans and supplements as part of a proactive approach to bone health. UI Health’s epilepsy specialists work with each woman’s healthcare team to ensure she receives comprehensive, preventive care tailored to her unique needs.

  5. Quality of Life Goals

    Each seizure can have devastating impacts on someone’s life. From withholding the ability to drive to changes in employment and negative impacts on memory and mood, even one seizure can uniquely and negatively impact a woman’s life. Many times women may carry an unequal responsibility in taking care of kids and managing their household. For each seizure a woman has, her entire family and support system can be impacted.

    “We understand how much a seizure can change a person’s lifestyle and impact their daily living. That’s why it’s important for us as a part of the patient’s care team at UI Health to assess our patients’ unique medical concerns so we can find the best treatment options to control and potentially eliminate seizure occurrence,” says Serafini.


Seeking Epilepsy Care that Considers You as a Whole Woman

The challenges faced by women with epilepsy go beyond seizures, extending into areas like reproductive health, mental wellness, and age-related health concerns. Yet, these issues are often inadequately addressed in standard epilepsy care.

UI Health’s Level 4 Epilepsy Center is dedicated to bridging this gap by offering gender-specific epilepsy care that adapts to each woman’s lifestyle, life stages, and health needs. If you or someone you know is a woman with epilepsy, consider partnering with a healthcare provider who understands the unique ways that epilepsy affects women.

At UI Health, our providers are committed to ensuring you have the support, information, and medical care you need to live well with epilepsy.