Women with Epilepsy: We Know More, but Misinformation Persists

Neurologists now clearly recognize that changes in seizure frequency parallel the menstrual cycle in many women, and new approaches are emerging to help women deal with these changes. Neurologists are also learning that birth control pills often do not work well for women who take certain seizure medicines (including some of the newer ones, which generally offer fewer unwanted side effects). And they are learning the steps that improve the likelihood that a woman with epilepsy will have a safe pregnancy and a healthy child:

• reducing or adjusting medications before, during, and after pregnancy
• starting multivitamins and folic acid before the woman becomes pregnant
• working closely with both the woman and the obstetrician
• informing the woman and her family about the precautions to be taken when she is caring for an infant

In general, women with epilepsy have benefited in recent decades from greater understanding of the disorder; better diagnostic tools; greater awareness of special issues such as birth control, pregnancy, sexual function, and menopause; and attempts to formulate individualized, safe approaches to these issues for each woman. More women also are being included in the testing of new medications and other treatments, because what works for a man may not work the same way for a woman.

Our progress is partly hidden because not all doctors who treat women with epilepsy are well informed about recent developments. Many women are still counseled incorrectly, being told that:

• The menstrual cycle has no relationship to the timing of their seizures.
• Seizure medicines never affect the regularity or duration of the menstrual cycle.
• Puberty and menopause have no influence on epilepsy.
• Birth control pills will make their seizures more frequent or more severe.
• Epilepsy makes pregnancy too dangerous.
• The risk that the woman will transmit epilepsy to her children is very high, so she should avoid giving birth.
• Phenobarbital is much safer to take during pregnancy than any other seizure medicine.
• Women with epilepsy must have induced labor or a cesarean section.

Misinformation is still common in these areas and many others. Unfortunately, even experts in epilepsy and women's health issues cannot yet answer every question. For instance, we don't know why epilepsy is so sensitive to the menstrual cycle in some women but not in others. We don't know what factors predict whether epilepsy will get worse during pregnancy. We don't know much about the role of menopause in epilepsy. When we encounter these unknowns, we must admit our ignorance, try to make rational suggestions based on what we do know, and carefully listen to the patient and the patient's family so we can devise the best care for that person.