The Challenges of Living With Narcolepsy While Pregnant and How Providers Can Help

A panel of providers and patients with narcolepsy who are parents shared the struggles and possible support tools that neurologists and other providers should be aware of when caring for patients with narcolepsy who are pregnant or postpartum.

This article has been edited to clarify a quote from A. Dhanya Mackeen, MD, MPH

Providers need to be more aware of the challenges that patients with narcolepsy who are pregnant or postpartum face in order to provide them with the support they need, according to a discussion panel at SLEEP 2022.

In a session entitled “Narcolepsy and Pregnancy: Elevating Patients and Clinician Voices to Explore Best Practices and Shared Decision-Making,” 4 patients and 1 spouse shared their individual experiences with coping with narcolepsy while pregnant and after delivery. The overarching theme of the discussion was that patients felt that their provider support was unsatisfactory and wished that they had more tools at their disposal.

“In general, women with narcolepsy were dissatisfied with the amount and type of counseling that they received regarding pregnancy and contraception. How can we better further? How can we better partner with our patients to be able to actually change this general consensus that they're dissatisfied?” said panelist Anne Marie Morse, DO, a pediatric neurologist at Geisinger.

Generally, patients with narcolepsy are recommended to stop narcolepsy therapy once pregnancy is confirmed and should not restart until after they have delivered the baby and are no longer breast feeding, meaning that patients could be off their medication for 2-5 years. This is because the health care community overall is concerned about the safety of pharmaceutical ingredients crossing into the placenta or being delivered to a baby via breast milk.

A. Dhanya Mackeen, MD, MPH, a maternal-fetal medicine specialist (MFM) at Geisinger, catalogued the different birth control methods that are or aren’t recommended for patients with narcolepsy, saying that the effectiveness of some may be reduced while receiving common narcolepsy medications, such as sodium oxybate.

A big recommendation for providers that Morse and MacKeen shared was the need for early conversations surrounding the creation of birth plans and treatment risks.

“As providers we need to be thinking about when we're actually introducing these conversations. So, when we're meeting women, that is something that should be introduced early on, so that there can be kind of that game plan,” Morse recommended.

Mackeen stated that birth plan conversations should be a multidisciplinary effort and that they don’t have to only happen or begin with MFM specialists like herself.

“At the risk of losing business, I don't think that people [with narcolepsy] need to be referred to MFMs…. That could be the [obstetrician or gynecologist]… I think that if the sleep medicine specialists are comfortable with that conversation… that the patients are probably more comfortable with them being their first line,” Mackeen expressed. “It's all in a multidisciplinary way, partnering together with the patient and the spouse, and all the physicians or health care professionals involved to really help make the best plan for the patient.”

The patient panel highlighted that access to marriage counseling and patient support groups were instrumental to them being able to manage their condition during pregnancy and care for their children adequately. One of the patients’ husbands also expressed a need for more attention to be directed towards supporting the mother’s support system, not because it was difficult for him to cope, but because he would have liked more information on how to better support his wife while she was struggling.

Mackeen also went over some of the clinical risks associated with narcolepsy and pregnancy as well as how the management of narcolepsy during pregnancy differs compared to other chronic diseases.

One concern she wanted to mitigate was that women who are worried about increased cataplexy during delivery can relax knowing that their body will continue to contract during labor in the event of a cataplexy attack and that there are tools that health care professionals can utilize, such as a vacuum or forceps, to assist in the delivery.

Patients can also be rest assured that administration of an epidural doesn’t increase any risks in patients with narcoloepsy and can give women in labor an opportunity to rest so they can be better prepared for when it is time to push.

“Just because you have increased catatonic chiropractic attacks during pregnancy does not mean that you will have increased cataplexy during delivery itself. And rarely, it can interfere with you having a vaginal delivery, but it doesn't have to,” Mackeen stressed.

MacKeen mentioned that hypercholesterolemia is the only chronic condition where medications are discontinued without question during pregnancy. Patients receiving other drugs for anxiety, attention-deficit/hyperactivity disorder, depression, and hyperthyroidism may be recommended to stop treatment on a case-by-case basis. Morse said that narcolepsy therapy should be treated the same way to ensure that the safety of the parent and the fetus or baby.

“It is important to weigh medications against the risks of being untreated. There is true risk for this patient population and not having adequate treatment brings not only physical risks to them and the fetus, but psychological risks as well,” warned Morse.