Treatment is complicated for anyone with epilepsy, but especially for women, with pregnancy, family planning, and health concerns such as osteoporosis all affecting the treatment that may be best for any one woman. Fortunately, many options are available, and epilepsy does not have to prevent a woman from leading a fulfilling life or having a healthy pregnancy.
In our second Women’s Health in Neurology interview, Krystal Sully, MD, talks about these and other issues relating to women and epilepsy, including how hormone changes during various life stages influence seizures, how women and their providers can work together to make decisions about treatment, and how greater access to information is reducing gender bias in research in the field.
How serious is epilepsy as a condition for women? What treatments exist for women with epilepsy?
Epilepsy is a condition of seizures that that affects 1 in 26 people. Although the number of men slightly outnumbers the number of women with epilepsy, the treatments we have available can have disproportionately negative effects or limitations on women.
Choosing the right treatment option is a process that should involve a discussion between the patient and her physician. All of the treatments available for epilepsy are available to both men and women alike. The difference in choosing a medication for a female patient usually is in regards to family planning. Bone health is a particular concern for women, and even more so for women with epilepsy. Some antiseizure medications may make you more prone to bone cell turnover and your doctor may monitor your vitamin D levels.
How do hormone changes during various life events, such as menarche, pregnancy, and menopause, affect epilepsy? What, if anything, can be done to help women with epilepsy as these changes occur?
Seizure frequency is affected by hormone changes during a woman's life cycle. Catamenial epilepsy are seizures that occur in relationship to menses (usually just before, but may occur with other timing). Research is still ongoing as to possible causes (leading theory points to progesterone and estrogen imbalances during fluctuations in the menstrual cycle) and treatments. One approach may be to address hormone fluctuations with birth control/hormonal therapy; another approach may be to adjust your anti-seizure medications.
Anti-seizure medications (typically the ones that are categorized as enzyme inducers) may cause changes in the way birth control is metabolized by your body: this may result in failure of your contraception and possible pregnancy. It is important to discuss with your doctor what potential effects your anti-seizure medication may have on your other medications. Similarly, when women undergo menopause, some may notice a change in their seizure frequency as their hormones change.
What health concerns to women with epilepsy face during pregnancy and childbirth? What can women do to ensure a health pregnancy and delivery?
The most crucial time to discuss pregnancy for a patient with epilepsy is BEFORE the pregnancy. Choosing effective contraception to avoid an unplanned pregnancy is just as important a conversation to have if pregnancy is not desired. If pregnancy is desired, the conversations between the woman and her physicians (neurologist, obstetrician, primary care provider) should also take place before the pregnancy occurs.
Preparation and planning are important to ensuring a healthy pregnancy for women with epilepsy. Visit with your obstetrician and your neurologist to discuss how to plan your pregnancy. Questions you may want to ask may include: Will my anti-seizure drug affect the health and development of my baby? What is the safest anti-seizure drug for me during pregnancy? There are discussion guides available (www.epilepsy.com) to help you and doctor answer any questions you may have.
Seizures in pregnancy tend to either remain at the same frequency or decline for the majority of women. However, frequency may increase for about 15-30% of women with epilepsy. Women who are seizure-free for at least 9 months prior to pregnancy are more likely to remain seizure-free during their pregnancy.
When a woman with epilepsy becomes pregnant, the goal is to minimize her seizures and minimize risk of harm to the fetus, whether the harm is from the seizures or from potential congenital malformations that may be caused by anti-seizure medications. The seizures that are of highest risk to mother and fetus are generalized tonic-clonic seizures.
While not an absolute rule, generally higher doses and taking multiple anti-seizure medications are considered a higher risk for contributing to congenital malformations. Congenital malformations are a risk with all pregnancies, and are slightly increased with some anti-seizure drugs. Some anti-seizure medications have little effect on fetal development (such as lamotrigine and levetiracetam), and the medication you are taking may not need to be changed. Even if you do not need to change medications, the dose may need to be adjusted as your body changes with the pregnancy.
An increase in your seizure frequency is a sign that your medication dose may need to be adjusted. Checking the blood levels of the anti-seizure medication can be useful to monitor if your body is metabolizing the medication differently. Levels tend to decrease during pregnancy and dosage adjustments may be necessary. While we have discussed some serious considerations, it is good to remember that over 90% of babies born to women with epilepsy are normal and healthy according to the Epilepsy Foundation.
Folate supplementation is recommended to help guard against congenital malformations in women without epilepsy, and higher supplementation is recommended for women with epilepsy. A daily multivitamin containing 0.4 mg folate, as well as an additional 1- to 4-mg folate supplement, is recommended for all women taking AEDs who are of childbearing age: this supplementation is ideally started prior to conception—again, to emphasize that family planning conversations with your doctor ideally take place before the pregnancy occurs.
Typically, healthy newborns even of mothers without epilepsy are recommended to receive a dose of vitamin K to minimize a complication called hemorrhagic disease of the neonate. In addition to this dose the child will receive, the American Academy of Neurology recommends that pregnant women with epilepsy who are taking anti-seizure drugs take a vitamin K supplement (10 mg/day orally) from the 36th week of gestation until delivery.
In addition to the standard safety precautions to which people with epilepsy might adhere, a new parent may encounter unique situations. Ensuring the safety of you and your new baby should include seizure-safety while caring for an infant. While it is easier said than done, try to minimize sleep deprivation. For water safety, try to bathe the infant with other people around in an infant bathing station that does not allow for the child to become submerged. To avoid a situation where your loss of awareness/consciousness would allow for the child to be unattended and possibly fall from a height, try changing the baby on the floor. Similar to recommendations regarding the effects of anti-seizure medications during pregnancy, the recommendations regarding if these medications are passed through breast milk in significant concentrations is drug-specific. You should talk to your doctor about your particular treatment regimen.
In addition to these hormone-related events, in what other ways is epilepsy different in women than in men? What can be done to improve how we treat, detect or research epilepsy among women?
Gender bias in medicine and research has been improving over time, but there is still ground to cover. Sometimes science does not have the answer to a specific question of how a condition affects a woman in a certain stage of her life or how to treat it.
In order to be informed, we first need to gather information. Registries are one way that health care professionals can gather information: the North American Anti-Epileptic Drug Pregnancy Registry (www.aedpregnancyregistry.org) looks at the relationship anti-seizure drugs and congenital malformations through confidential participation of pregnant women with epilepsy. These kinds of studies will help guide physician recommendations and the decisions women with epilepsy make regarding treatment.
We live in an age of information empowerment. This includes access to support groups available locally and through social media. Some patients find these to be a helpful emotional and social support. Ultimately, informed conversations between you and for doctor should help to work towards the right treatment plan, which may change as a woman’s body changes throughout her life.