The Mysterious Nature of Narcolepsy

So, you get close to the recommended amount of nightly sleep. You keep a regular sleep schedule and practice healthy sleep behaviors. Still, you struggle with chronic sleepiness throughout the day. Maybe you’ve decided you’re ready to talk to a healthcare professional about the challenges you’re feeling during the day and around sleep at night, or because you’ve noticed some shocking symptoms that keep you from being awake and asleep when you want to be. While less common, there’s a chance that narcolepsy could be what’s causing your issues with wakefulness and sleep. Narcolepsy is sleep disorder that affects how your brain is able to control and segment sleep and wake. That means people with narcolepsy often feel very sleepy during the day when they would expect to be alert, and they also can have difficulties sleeping at night. Narcolepsy has significant impacts on daily life. It is often misunderstood, and delayed and underdiagnosis is common, so recognizing and understanding its symptoms is the first step towards being diagnosed and getting the treatment you need. 

Diagnosing Narcolepsy Can be Challenging

Narcolepsy is often hard to diagnose because its symptoms may overlap with those seen with metabolic neurological, sleep, or psychiatric health issues. What’s more, narcolepsy often coexists with other conditions, which can make diagnosis even harder. For example, a person with both narcolepsy and depression might receive treatment for depression while their narcolepsy goes undetected. Narcolepsy can even co-occur with other sleep disorders like sleep apnea, often marked by snoring, which can complicate or delay narcolepsy diagnosis. Persistent excessive daytime sleepiness despite getting adequate hours of sleep, sleep paralysis (where you can’t move or speak upon waking) and hallucinations while falling asleep or waking up are all symptoms linked to the two types of narcolepsy: type 1 and type 2. The main difference between the two types is that type 1 also features sudden muscle weakness during emotional bursts (like laughter), called cataplexy. People with narcolepsy type 1 are deficient in a neurotransmitter called orexin (aka hypocretin), which helps the brain regulate sleep and wake. 

Shortening the Long Journey to Care

With all of these different considerations, the path to a diagnosis of narcolepsy can be long and frustrating. It can take many years from the onset of symptoms which often emerge in middle childhood through young adulthood, to get a proper diagnosis. What contributes to this delay? For starters, it’s a rare sleep disorder that isn’t well-known by most people, even in the case where the hallmark symptoms are all present. General practitioners and even some specialists may not be familiar with the full range of narcolepsy symptoms or the criteria for diagnosis. This can lead to people being referred to multiple specialists and pursuing other diagnoses before narcolepsy is considered. Many people may not even realize they have symptoms of this sleep disorder, so they don’t seek help until they have been coping for many years. 

The Role of Sleep Studies

Diagnosing narcolepsy typically involves a study in a sleep lab, which includes an overnight polysomnogram (PSG) followed by several scheduled daytime naps in a Multiple Sleep Latency Test (MSLT). The nap test measures how quickly a person falls asleep and whether they enter rapid eye movement (REM) sleep during the nap. Preparing for this type of testing is important, and includes an inventory of medications and sleep schedule, ruling out other common sources of sleepiness. While these tests are crucial for a definitive diagnosis, they are not always readily accessible. There can be long wait times to see a specialist or schedule the necessary work-up and sleep studies, and not all healthcare facilities are equipped to perform this type of testing. 

Diagnosis can be Life Changing…in a Good Way!

While it takes a proper diagnosis and appropriate treatment and support to manage symptoms, living well with narcolepsy can be achieved. Diagnosis and treatment are key in achieving goals at work, optimizing your academic journey, and fostering and maintaining social connections. Treating narcolepsy can also help reduce the risk of accidents by helping to address the possibility of sudden sleep attacks while driving or operating machinery.

Improving the diagnosis of narcolepsy takes several steps. First, increasing awareness among healthcare providers and the public to better understand the disorder and its symptoms is important. For clinicians, that means access to continuing medical education programs and incorporating more sleep medicine into medical school curricula. Also, public awareness campaigns can encourage people, friends, and families to more quickly identify symptoms and seek help.

Narcolepsy can be very difficult to diagnose. It occurs in only about 1 in every 2000 people, and diagnosis rates are still lower than they could be because:

• Narcolepsy is a complex and often misunderstood disorder.
• Its symptoms overlap with symptoms of other conditions.
• There’s a lack of awareness among healthcare providers and the general public. 
• Specialized tests are needed for a proper diagnosis. 

Through more awareness, improving education, and emphasis on earlier diagnosis, more people living with narcolepsy can get the care they need and be on the path to being their Best Slept Self^®.

This content was produced independently by the National Sleep Foundation and supported by Takeda, a Gold sponsor of the 2025 Sleep Awareness Week^® campaign. Sponsored content is educational and not intended to promote products or services or make medical claims.

Takeda is a pharmaceutical company whose vision is to discover and deliver life-transforming treatments, guided by our commitment to patients, our people and the planet.