World Narcolepsy Day: Raising Awareness for Earlier Recognition and Management

World Narcolepsy Day, observed on September 22, highlights a complex neurological disorder that extends far beyond excessive daytime sleepiness. Patients often experience cataplexy, sleep paralysis, hallucinations, and fragmented nighttime sleep, yet diagnosis is frequently delayed for years. From a neurologist’s perspective, this day underscores the importance of earlier recognition, improved education, and access to effective therapies that can alleviate symptoms but do not yet offer a cure. It also draws attention to the broader impact of narcolepsy on cognition, mood, and daily functioning, reinforcing the need for continued research and advocacy to advance patient care and long-term outcomes.

For World Narcolepsy Day, NeurologyLive® sat down with sleep medicine physician Dionne Morgan, MD, to unpack what clinicians may be missing about this often-misdiagnosed disorder. Morgan, a sleep medicine physician at Baptist Miami Cardiovascular Institute, walked through the clinical clues that should prompt a narcolepsy workup, when to use in-lab PSG followed by MSLT, and how to think about hypersomnolence beyond obstructive sleep apnea or insufficient sleep. She also discussed how lifestyle scaffolding and workplace or school accommodations can change daily function, what to do about common psychiatric and metabolic comorbidities, and how today’s therapies are broadening beyond legacy stimulants.

NeurologyLive: What is the significance of World Narcolepsy Day and the need to raise awareness for this condition?

Dionne Morgan, MD: I think it’s important to first start with ensuring that people understand what narcolepsy really is. Narcolepsy is a rare neurologic disorder, sometimes described as a neurodegenerative disorder, that is primarily characterized by excessive daytime sleepiness—an uncontrollable need to sleep. Patients often describe it as impossible to fight off, no matter what they are doing. Paradoxically, although they are constantly tired, they also experience poor sleep quality at night, because of significant sleep fragmentation.

Beyond sleepiness, there are other hallmark features. Many patients experience sleep paralysis, waking up unable to move for seconds or minutes, sometimes with frightening hallucinations as they are falling asleep or waking up. In type 1 narcolepsy, cataplexy can be especially debilitating. Imagine a patient laughing, enjoying themselves, or even just feeling strong emotions, and suddenly they collapse because they’ve lost muscle control. To the outside world, it can look like a stroke, but it is actually one of the unique manifestations of narcolepsy.

Narcolepsy is rare, but it usually begins in adolescence or young adulthood, most commonly in the late teens or early 20s. That said, onset can occur much earlier, as young as age five, or as late as 50. Unfortunately, it is often misdiagnosed, and patients frequently see several doctors before the correct diagnosis is made. That’s why World Narcolepsy Day is so important—it gives us the opportunity to bring attention to the disease, to highlight the real challenges patients face, and to encourage earlier recognition and intervention.

What are some of the challenges with diagnosing narcolepsy, and what should neurologists focus on to improve recognition?

Clinical history remains the most important tool. If we don’t think about narcolepsy, we’re unlikely to make the diagnosis. Any patient who comes in with excessive daytime sleepiness, an irrepressible need for naps, a history of drowsy driving, or repeated complaints of poor nighttime sleep deserves a careful look. The presence of cataplexy—sudden loss of muscle tone while laughing, angry, or sad—should immediately raise suspicion.

For neurologists, narcolepsy should always be on the differential when patients present with hypersomnolence. Both type 1 and type 2 narcolepsy fall into the category of central disorders of hypersomnolence, so even though obstructive sleep apnea and insufficient sleep are far more common, we cannot ignore the possibility of narcolepsy.

The appropriate testing is also critical. A home sleep apnea test is not sufficient. Instead, we need an in-lab overnight polysomnogram followed by a multiple sleep latency test if suspicion remains high. That stepwise approach ensures we capture the sleep architecture and latency data needed for an accurate diagnosis.

Beyond pharmacologic therapies, what lifestyle or behavioral strategies do you recommend for managing narcolepsy?

The foundation is always good sleep hygiene—maintaining consistent bed and wake times. Patients often do best with scheduled naps, and those naps need to be recognized as part of treatment. Regardless of their occupation, patients are entitled to accommodations under the Americans with Disabilities Act. That means employers and schools should allow them to take scheduled naps, which can be extremely refreshing and allow them to function more effectively.

Healthy diet and regular exercise are also important, as they support overall sleep quality and reduce the impact of fatigue. But I would emphasize that almost every patient with narcolepsy will require pharmacologic therapy. Behavioral strategies help, but medication is usually necessary to adequately address the excessive sleepiness and other symptoms.

How do you address comorbidities like depression, anxiety, and obesity in patients with narcolepsy?

This is a great question, because we know there is a higher association between narcolepsy and psychiatric or metabolic conditions. Anxiety, depression, ADHD, schizophrenia, and eating disorders are all reported at higher rates in patients with narcolepsy. Many patients are initially misdiagnosed with uncontrolled depression or another mental health issue, when in fact the underlying narcolepsy is driving those symptoms.

Fortunately, some antidepressants can actually help manage narcolepsy symptoms as well. SSRIs and SNRIs, such as fluoxetine or venlafaxine, are good examples—they can treat depression while also helping with narcolepsy symptoms, including cataplexy. That dual benefit makes them particularly useful in patients with type 1 narcolepsy. Recognizing these overlaps is key, because if we only treat the psychiatric condition and miss the narcolepsy, patients remain impaired.

What can neurologists do to better support patients and help them navigate daily challenges and stigma related to narcolepsy?

The first step is empathy and recognition that this is a lifelong, disabling disease. Patients do not have control over it, and while we do not have a cure, we do have effective therapies. For a long time, treatment relied heavily on stimulants like Adderall, but now we have more options—sodium oxybates such as Xywav, Xyrem, and Lumryz, and newer agents like pitolisant, which is not a controlled substance. Having multiple therapeutic options allows us to tailor treatment to the individual patient.

Equally important is supporting patients in their daily lives. High school and college students may need medical documentation to obtain scheduled naps or academic accommodations. Patients and families need ongoing education, not only about the disease itself but also about the available therapies and resources. Reducing stigma is critical—many patients feel misunderstood or dismissed, and physicians can play a role in changing that by advocating for accommodations and encouraging open conversations.

Ultimately, while narcolepsy remains incurable, patients can live fulfilling lives if they are properly diagnosed, well managed, and supported with the right combination of therapies, lifestyle strategies, and advocacy.

Transcript edited for clarity.