Many women with the sleep disorder are of childbearing age and would appreciate information about how symptoms and medications may impact everything from contraception to labor and delivery to childcare.
By Lisa Spear
The nine months of pregnancy—a time often characterized as wholly joyful—can lead to a maze of complicated decisions and mixed emotions for women who live with narcolepsy.
When a woman first learns she is pregnant, she may wonder if the narcolepsy medications to combat her daytime sleepiness will harm her unborn child. If she decides to reduce her medication, she may ask herself if it is safe to continue to drive to work. If she experiences cataplexy, she may contemplate if it is dangerous to have a vaginal birth. These are just a few of the reasons why having conversations about family planning early and often is all the more important for clinicians who are caring for women with narcolepsy.
“In a reproductive-aged woman, I would make sure even in my first visit with her that I understood where she is with pregnancy and contraception,” says Nancy Foldvary-Schaefer, DO, MS, director of the Sleep Disorders Center at Cleveland Clinic in Ohio.
“I think that is just an important conversation to have,” she says.
Not all providers take a proactive approach to this patient population. Of 182 women who participated in a Narcolepsy Network survey, who had a history of narcolepsy and pregnancy, most were dissatisfied with the amount and type of counseling that they received regarding pregnancy and contraception.1
A coauthor on the paper, which was published in The Journal of Clinical Sleep Medicine, Foldvary-Schaefer says even if a woman is not planning to conceive, it is important to speak with her about family planning since certain narcolepsy drugs can interfere with oral contraceptives. Women should be educated in this area so they can make informed decisions about their birth control. Also, plenty of women who become pregnant have not put much thought into how their disorder might impact them and their baby. “A lot of women aren’t thinking, ‘Gee, what am I going to do about my narcolepsy medication if I become pregnant’ and a huge number of pregnancies in the United States are unplanned,” Foldvary-Schaefer says.
Every year, Foldvary-Schaefer treats between three and five pregnant women with narcolepsy and monitors them closely. Since there’s been little research into how to best handle these patients, and since narcolepsy is a relatively rare disorder, there is a paucity of research into how narcolepsy symptoms change during pregnancy. Many of the details of how a woman’s body will react to the various hurdles of carrying a fetus, going into labor, and even breastfeeding have not been thoroughly interrogated by science.
For this reason, Foldvary-Schaefer says the best approach for providers is to come up with an individualized treatment plan for each patient. This could include a plan to decrease wake-promoting medications, a timeline to wean off antidepressants, a schedule for in-person visits, and even a postpartum plan for adjusting medications that can smooth the transition into motherhood.
Many women surveyed report being fearful of continuing their medication during pregnancy. According to the Narcolepsy Network survey, 78.7% of respondents who reported a history of pregnancy did not use pharmacotherapy during this time. Most of them discontinued narcolepsy pharmacotherapy during pregnancy because of their own fear of harming the fetus, 82.9%, and at least 58.5% were advised by a physician to discontinue medication.
According to the study, to mediate the symptoms of coming off of medication, 72.1% of women increased their sleep time, 32.6% stopped working, and 27.9% discontinued driving.
Foldvary-Schaefer says that about 50% of the pregnant patients she cares for, who have narcolepsy, decide to continue taking their medication. Over the roughly 25 years that she has been in practice, none of these women have experienced any significant negative outcomes or birth defects from this decision, Foldvary-Schaefer says.
However, she says, this is a small sample size. Since narcolepsy is not a common disease, affecting just 0.05% of the United States population and 1 in 2,000 people worldwide,2 tracking these women is a challenge.
According to a paper by coauthor Michael J. Thorpy, MB, ChB, there are no detailed practice parameters for the treatment of women with narcolepsy during pregnancy. A survey of 75 clinicians worldwide found that the management of patients with narcolepsy varies widely from country to country. The majority of the clinicians stopped the narcolepsy medications after conception and during pregnancy.3
Some women may find that they need to keep taking medication to promote wakefulness, especially those who continue to work or drive. “Narcolepsy is characterized by pervasive daytime sleepiness, some to the point where they may be at risk if they are not being treated,” Foldvary-Schaefer says.
There is no evidence in the available literature that wake-promoting medications for narcolepsy may contribute to a poor outcome in fetuses, so for many women, especially those who need to keep up with daily responsibilities during their pregnancy, the decision to continue their medication is a simple one. When appropriate, Foldvary-Schaefer aims to treat these patients with as few medications as possible, at the lowest effective dose.
“I’ve treated a lot of women who were planning pregnancy and we talk about it ahead of time to identify what is the lowest amount of medication she could be on that would control her symptoms in an adequate way,” she says.
According to the Narcolepsy Network study, results that looked at pregnancy outcomes were not significantly different between those who used mono-therapy, polytherapy, or no pharmacotherapy during pregnancy.1
For those who do want to cut down on their medication or stop taking it entirely, women may find that strategic use of caffeine and 10-minute power naps can promote wakefulness. Some women may decide to take time off from work and to avoid driving if they feel too sleepy. If needed, medical providers can help their patients get disability-related benefits at work. If pregnancy impacts the woman’s ability to sleep, Foldvary-Schaefer suggests that they speak with their employer to get intermittent family medical leave.
Others may find that during pregnancy, they experience a surge of energy that may be due to hormonal changes. “Some women may experience a boost in alertness during pregnancy and may find that they do not need medication,” she says.
Women who experience cataplexy should be encouraged to educate their OB/GYN, who might not be familiar with the condition. Cataplexy, often brought on by strong emotions, could be triggered during labor, and the physician who is delivering the baby should be informed of that potential. Since there is little research in this area, it is unclear if cataplexy typically becomes worse during labor. Only one respondent in the Narcolepsy Network survey reported experiencing cataplexy during labor.
“It could impair a woman’s ability to proceed with a normal labor, sort of like how a seizure might in epilepsy,” Foldvary-Schaefer says.
As soon as she finds out that one of her patients is pregnant, Foldvary-Schaefer will immediately find out where that woman is planning to deliver and the contact information for the patient’s OB/GYN to ensure that chart notes are going to that provider consistently, so that there is an ongoing plan in place. “It’s just important for women to have teams of providers who work together. It is important for sleep providers to take the initiative,” Foldvary-Schaefer says.
Typically, Foldvary-Schaefer meets with these women each trimester and then again soon before the birth to discuss a postpartum plan for restarting or increasing medications after delivery. Once an agreement on how to move forward is reached, Foldvary-Schaefer will forward a copy of the plan to all other treating physicians.
“I think that the best we can do is to optimize communication between teams,” she says.
Those who experience cataplexy may need additional coaching on safe practices when handling their babies. If needed, a postpartum doula or nurse could be hired by the family to help out. An extra set of hands can also help lessen the sleep deprivation that is often experienced by new parents.
“People with narcolepsy are already severely sleepy, even with a longer duration of sleep, so sleep deprivation on top of that with a newborn can really be problematic,” Foldvary-Schaefer says.
Overall, women in this population can be reassured that positive outcomes are likely. Foldvary-Schaefer says, “Many women with narcolepsy during pregnancy do great. Their outcomes are probably quite comparable to the general population based on the little bit we know in the literature.”
Lisa Spear is the associate editor of Sleep Review.
1. Pascoe M, Carter LP, Honig E, et al. Pregnancy and contraception experiences in women with narcolepsy: a narcolepsy network survey. J Clin Sleep Med. 2019;15(10):1421-6.
2. Thorpy MJ, Krieger AC. Delayed diagnosis of narcolepsy: characterization and impact. Sleep Med. 2014;15(5):502–7.
3. Thorpy MJ, Zhao CG, Dauvilliers Y. Management of narcolepsy during pregnancy. Sleep Med. 2013;14(4):367-76.