Managing Narcolepsy During Pregnancy

Women with narcolepsy who want to get pregnant need special management from their healthcare team.

Narcolepsy is fairly rare, so the number of women who have narcolepsy and get pregnant is a very small group. Most research studies have to gather cases from several countries to piece together data that tells them what good prenatal care looks like. Even then, most of the recommendations for women with narcolepsy who are pregnant boils down to educated guesswork.^1-4

Narcolepsy drugs during pregnancy

There have been no studies in humans to confirm that narcolepsy drugs are safe for a growing baby during pregnancy. That is why many doctors are cautious about continuing narcolepsy drugs when a woman is trying to conceive, during pregnancy, and while breastfeeding. In the United States, many women with narcolepsy are told to stop taking these drugs, especially stimulants, if at all possible.^2,3

However, this may not be a safe option for everyone. Some women may not be able to function without their narcolepsy medicines. Others may be okay if they can build in extra naps during the day. Many start taking stimulants again once they are no longer breastfeeding. Regardless, women with narcolepsy should not stop taking their drugs without talking with their doctor first.²

Sodium oxybate (brand names XyremⓇ or XywavⓇ) may be prescribed during pregnancy. Sodium oxybate is a category B drug class. This means that studies have shown no harm to unborn animal babies, but there have not been adequate well-controlled studies in humans.^3-5

Sodium oxybate is taken at night to reduce cataplexy and daytime sleepiness. However, women with sleep apnea, edema (swelling), or high blood pressure may not be able to take it. If you are pregnant or plan to become pregnant, talk to your doctor about the risks and benefits of narcolepsy drugs during pregnancy.^3-5

Challenges of having narcolepsy while pregnant

One of the largest studies of pregnant women with narcolepsy is a 2013 study that gathered information from 12 European countries. It included 249 women with Type 1 narcolepsy (narcolepsy with cataplexy) and 33 women with Type 2, or narcolepsy without cataplexy. A few trends emerged.⁶

The study found that women with narcolepsy were more likely to develop gestational diabetes, gain more weight, and have anemia. Severe complications were rare, but rates of cesarean section were higher compared to women who did not have narcolepsy. Their babies were of average birth weight and gestational age. However, 6 of every 10 women in the study found infant care difficult.⁶