Epilepsy Birth Control Registry

What is safe and effective contraception for women with epilepsy?

Background

We know that reproductive hormones such as the ones that are in various forms of hormonal contraception can affect the excitability of nerve cells in the brain and thereby potentially make it easier or harder to have a seizure.  In a survey of 1,144 women with epilepsy, 18-47 years of age, there were more reports of changes in seizure frequency on hormonal than on non-hormonal contraception and two times more reports of seizure increase than decrease.  Estrogen can lower the serum levels of some antiepileptic drugs (AEDs) and thereby make it easier to have a seizure.  Some AEDs, in turn, can act on the liver to breakdown the hormones in birth control pills, thereby increasing the chance of having an unintended pregnancy or irregular bleeding.

 

Purpose

Our goal is to develop guidelines for the safe and effective use of contraception by women with epilepsy.  In order to do so, we need to learn more about which methods of contraception and which combinations of contraception and AEDs may change seizure frequency and which contraceptive methods and contraception-AED combinations may increase the risk of unintended pregnancy or menstrual disorder.

 

The Study

To address this issue, investigators from Harvard and Columbia Medical Schools developed an online survey and educational site located at epilepsybirthcontrolregistry.org  The site enrolled 1,144 women with epilepsy in the community (1,000 across the USA and 144 from other nations) who provided us with important information about the contraceptive practices of women with epilepsy, who they consult and what reasons they have for their contraceptive selection, the effects of their contraceptive-AED combinations on seizure frequency, their rates of unintended pregnancy on various contraceptive methods and contraception-AED combinations, reasons for discontinuing various forms of contraception, and use of folic acid supplement during their reproductive years.  A summary of these findings as well as other information about the menstrual cycle, reproduction and contraception are available in the educational section of the website.

 

Although the survey findings are important, real-time tracking generally provides scientifically more accurate data.  Therefore, we invite you to participate in our ongoing online real-time tracking of what happens to seizures on the various forms of contraception and especially when considered in relation to the various types of AEDs.  To do so, please complete the brief 11-question survey on epilepsybirthcontrolregistry.org and we will then send you an invitation link to our online EBCR tracking app.  This app allows you to report seizures, antiepileptic drug changes, contraception changes, menses and pregnancies. You will be able to print a calendar or list of events for your own records and for your health care provider.   The anonymous information gathered will be used by us to develop guidelines for the selection of safe and effective birth control methods and to advocate for the availability of these methods to all women with epilepsy in our society.

 

Privacy and Gift Card

We will not publish or share your email address or any identifiable personal health information.

Participants will receive a $10 Amazon.com gift card code for every three months of participation. Participation in this app is entirely voluntary and you may discontinue at any time.

 

Go to www.epilepsybirthcontrolregistry.org, take our survey, download our real-time tracking app and then catch up on the latest information about birth control for women with epilepsy.

Andrew G. Herzog MD, MSc

Principal Investigator

Epilepsy Birth Control Registry Project

Professor of Neurology

Harvard Medical School

Director, Harvard Neuroendocrine Unit

Beth Israel Deaconess Medical Center

 

 

 

References

  1. Herzog AG, Mandle HB, Cahill KE, Fowler KM, Hauser WA, Davis AR. Contraceptive Practices of Women with Epilepsy: Findings of the Epilepsy Birth Control Registry. Epilepsia 2016;57(4):630-7.
  2. Herzog AG, Mandle HB, Cahill KE, Fowler KM, Hauser WA. Differential Impact of Contraceptive Methods on Seizures Varies by Antiepileptic Drug Category.  Epilepsy & Behavior 2016; 60:112–117.
  3. Herzog AG, Mandle HB, Cahill KE, Fowler KM, Hauser WA. Predictors of Unintended Pregnancy in Women with Epilepsy.  Neurology 2017;88:728-733.
  4. Mandle HB, Herzog AG, Cahill KE, Fowler KM, Hauser WA, Davis AR. Reasons for Discontinuation of Reversible Contraceptive Methods by Women with Epilepsy. Epilepsia 2017;58(5):907-914.
  5. Herzog AG, MacEachern DB, Mandle HB, Cahill KE, Fowler KM, Davis AR, Hauser WA. Folic Acid Use by Women with Epilepsy: Findings of the Epilepsy Birth Control Registry.  Epilepsy & Behavior 2017;72:156–160.
  6. Herzog AG, Mandle HB, MacEachern DB. Does the Age of Seizure Onset Relate to Menarche and Does It Matter? Epilepsy & Behavior (in press).