Executive Summary

American women who take anticonvulsant medications face difficult choices between their medical need for treatment and the potential risks associated with the drugs, both during pregnancy and in the long term. Anticonvulsant drugs were originally developed to treat epilepsy but are now used for many other medical conditions. The Epilepsy Foundation, guided by a distinguished committee of neurological experts, is mounting an educational Call to Action campaign targeted to women and their physicians. The campaign urges both to become more aware of emerging trends on the relative risks and benefits of these widely-prescribed medications, and proposes a series of action steps that women may take to reduce those risks. The Foundation is also urging American women who become pregnant while taking anticonvulsants to sign up with the North American Pregnancy Registry so that more can be learned about the safety of these medications during pregnancy.

More than a million American women with epilepsy take anticonvulsant drugs to prevent seizures. Millions more may at some point take them to treat chronic medical problems affecting the central nervous system, including migraine, severe pain caused by damaged nerves (neuropathic pain), and bipolar and associated mood disorders.

While the vast majority of women who become pregnant while taking these medications deliver healthy babies, new research is showing that some anticonvulsants increase the risk of major malformations (including heart, spinal cord and cleft lip/cleft palate abnormalities) in infants exposed to them during the mother’s pregnancy. Research is also reporting links between some anticonvulsants and thinning of the bones, changes in weight, and a cluster of endocrine effects.

In general, studies of these medications have focused on the "older" drugs (that is, those approved prior to 1980) such as carbamazepine, phenobarbital, phenytoin, primidone, and valproate. A convergence of data from recent studies suggests that valproate may not be the best choice for women of childbearing age unless seizures or other medical problems cannot be controlled with other medication. On the other hand, very little is known about the long term or pregnancy-related effects of anticonvulsants approved within the past 15 years, although differences in their metabolism has led to hopes that they will have fewer negative effects. The Epilepsy Foundation is calling for more research on pregnancy and long term effects of all the newer drugs.

In addition to its recommendation that women who take anticonvulsants and become pregnant enroll in the North American Pregnancy Registry, the Epilepsy Foundation’s new campaign is urging women to increase their chances of a successful pregnancy and long term health by taking the following actions: to work with their doctors on the best choice of medication; to review anticonvulsant risks and benefits with their healthcare providers; to discuss medicine changes before pregnancy begins; to take folic acid and vitamin supplementation before and during pregnancy; to have their medication levels monitored during pregnancy; to avoid stopping an anticonvulsant abruptly; to explore ways of preventing other negative effects on quality of life; and to keep current on emerging research.

The Anticonvulsants and Women: A Call to Action campaign continues the Epilepsy Foundation’s decade-long commitment to the dissemination of information on relationships between epilepsy, its treatment, and women’s health.