Nacrolepsy is a sleep disorder in which the brain has trouble regulating the sleep-wake cycle. It is a lifelong condition that may interfere with daily activities and may also pose challenges with major life events such as pregnancy.

Narcolepsy is considered a rare disease. It affects only about one in 2,000 people in the United States and even fewer pregnant people. There are currently no official clinical guidelines on treating narcolepsy during pregnancy, and there is not a wealth of research on the subject. This article covers findings and recommendations on the management of narcolepsy from the available research.

Narcolepsy Symptoms

If a person's narcolepsy symptoms start before pregnancy, they will persist throughout and after pregnancy. People with narcolepsy experience excessive daytime sleepiness (hypersomnia), which is characterized by persistent sleepiness throughout the day, regardless of the amount of sleep achieved at night.

Another symptom of narcolepsy is cataplexy, or sudden onsets of loss of muscle tone and weakness. Episodes of cataplexy range in severity from mild — resulting in drooping eyelids and relaxed facial muscles — to strong, which may result in total body paralysis and falling. Episodes may last from a couple of seconds to a few minutes.

Cataplexy is usually brought on by strong emotions such as intense laughter, fear, or anger. Cataplexy does not cause any lasting damage. However, it can be dangerous if a cataplectic episode occurs while a person is performing activities such as driving, as a person may temporarily have no control over their body during an episode.

There are several other symptoms of narcolepsy, including hallucinations, vivid dreams, the sudden urge to go to sleep, and sleep paralysis — the temporary inability to move or speak while falling asleep or waking up.

All of these symptoms can be severe and have the potential to affect sleep and quality of life during pregnancy.

How Narcolepsy May Affect Pregnancy

Pregnancy has an impact on sleep quality, but it is less clear how it affects the sleep quality of pregnant people with narcolepsy. In the past decade, sleep medicine and psychiatry researchers have started examining how symptoms of narcolepsy change during pregnancy, how narcolepsy symptoms may affect pregnancy, and also how narcolepsy medications may affect pregnancy and breastfeeding. Although the research is sparse and employs different methods, there are some findings to discuss.

Birth Complications

Can narcolepsy affect the risk of complications during pregnancy and childbirth? One may not expect most symptoms of narcolepsy to pose major concerns during pregnancy, but the possibility of undergoing an episode of cataplexy during childbirth may be troubling.

One study that surveyed 75 clinicians from around the world found that most pregnant people with narcolepsy had delivered babies without any complications. They found that it was rare for an episode of cataplexy to interfere with delivery. Furthermore, if a caesarian section (C-section) were required, there were no increased risks from the surgery or anesthesia.

Another study from the Journal of Sleep Research examined 249 women in Europe, all of whom had narcolepsy and some of whom experienced cataplexy as a symptom. The study found more obstetric (birth) complications among the women with cataplexy, but the complications were not severe. A third, smaller study — also from the Journal of Sleep Research — found no difference in the number of obstetric complications among 25 women with narcolepsy and cataplexy, compared to 75 participants who did not have narcolepsy.

Gestational Diabetes

In several studies, researchers found that women with narcolepsy had higher rates of impaired glucose metabolism and gestational diabetes during pregnancy. Gestational diabetes is a form of diabetes that is diagnosed for the first time during pregnancy. It may increase the chances of having a C-section, as well as the pregnant person’s risk of high blood pressure and future diabetes.

Although gestational diabetes poses a complication for pregnancy, it can be controlled and will usually go away after delivery. Gestational diabetes must be carefully managed with regular blood sugar tests and lifestyle changes during pregnancy.

Caesarian Sections

A C-section is a surgical procedure for delivering a baby and is done as opposed to vaginal delivery for many different reasons. It is considered major surgery, so the surgery itself, along with general anesthesia if needed, may pose health complications to the pregnant person and baby.

The Journal of Sleep Research's study of 249 women with narcolepsy found that C-sections were conducted more frequently in women with cataplexy. The journal's smaller study found comparable rates of C-sections among the 25 women with narcolepsy and cataplexy and the 75 healthy controls.

Although C-sections may pose complications, they may be the safer route for delivery for those with a risk of a cataplexy episode during delivery.

Newborn Care

Another consideration for expectant parents with narcolepsy is how symptoms of the condition may affect their ability to care for their newborns postpartum (after birth). Excessive sleepiness and cataplexy could interfere with a person’s ability to care for a newborn.

One of the studies found that participants living with narcolepsy and cataplexy had greater difficulty coping with caring for a newborn, due to fear of a cataplectic episode while feeding or holding their baby. Another study noted that symptoms of narcolepsy and fear of possible symptoms may interfere with the care of a newborn.

How Narcolepsy Medications May Affect Pregnancy

Another major question with narcolepsy and pregnancy is the potential interactions or effects of narcolepsy medications on pregnancy outcomes. There are several different types of medications prescribed to people with narcolepsy.

The first line of treatment may involve a central nervous system stimulant such as Provigil (modafinil), which reduces daytime drowsiness. If Provigil doesn’t work, sometimes amphetamine-like drugs are prescribed. These drugs have many side effects and also have the potential for abuse, so careful monitoring is advised. Other medications for narcolepsy include antidepressants like Anafranil (clomipramine) to help with cataplexy and Xyrem (sodium oxybate) to treat cataplexy and daytime drowsiness.

Research Studies

In general, there are very few studies that examine the effect of narcolepsy medications on pregnancy. For ethical reasons, researchers would not want to test a medication in a clinical trial on a pregnant person or a fetus if there was any indication the medication could be harmful.

The effects of narcoleptic medications on pregnancies have been studied more commonly in animals. The risk of harmful birth effects from narcoleptic medications on animal pregnancies is low, but this risk is currently not confirmed in humans. Studies that examined survey data suggest that most people were advised by their clinicians to stop taking narcolepsy medications during pregnancy.

Modafinil Exposure

A recent study that looked at Danish health registries found an increased risk of birth malformations in babies exposed to modafinil during their first trimester, as compared to a different drug or no drug exposure. However, not all pregnant women in this study were taking modafinil for narcolepsy, so a factor not related to narcolepsy or modafinil may have been involved in the resulting birth abnormalities.

The common recommendation is to discontinue narcolepsy medications during pregnancy and lactation. If you have narcolepsy and get pregnant, consult with your health care provider and obstetrician to determine the best option for you.

Managing Pregnancy and Narcolepsy

When preparing for pregnancy (whether you have narcolepsy or not), an important first step is consulting your health care providers. During pregnancy, your narcolepsy symptoms may change or get worse, and your clinician may instruct you to discontinue narcoleptic medications. Your clinician may then shift the focus of your treatment to lifestyle changes that promote sleep hygiene:

• Taking short naps during the day when you feel the sleepiest
• Maintaining a regular sleep and wakefulness schedule
• Avoiding caffeine, alcohol, and heavy meals before bedtime
• Exercising daily
• Creating a relaxing bedtime routine

Unfortunately, there is not an abundance of research about pregnancy and narcolepsy, but the existing research suggests that a person with narcolepsy is not at a higher risk of pregnancy or birth complications, compared to someone who doesn’t have narcolepsy. Medication and symptom management are the primary areas of concern for a person living with narcolepsy who is pregnant or caring for a newborn — particularly for individuals with more serious symptoms such as cataplexy.

Clinicians and providers such as social workers can help you put systems in place to minimize the chances of accidents and injuries due to a cataplexic episode. Furthermore, asking for help from family and friends to care for a child may help you cope with excessive sleepiness and the need for daytime naps.

Talk With Others Who Understand

MyNarcolepsyTeam is the social network for people with narcolepsy and their loved ones. On MyNarcolepsyTeam, more than 6,500 members come together to ask questions, give advice, and share their stories with others who understand life with narcolepsy.

Have you experienced narcolepsy and pregnancy? Share your experience in the comments below, or start a conversation by posting on your Activities page.