When Leah was a 15-year-old high school sophomore, she struggled with excessive daytime sleepiness that made it difficult to maintain the high standards she set for herself in her coursework and extracurricular activities. When she began falling asleep sitting up in band class while her peers played their instruments, she sought help from her family doctor. She was referred to a neurologist who specialized in sleep medicine. Following two diagnostic tests at a sleep center, Leah was diagnosed with narcolepsy type 2, which is a disorder that causes extreme daytime sleepiness.

Hypersomnia is any condition that makes a person feel excessive daytime sleepiness. Secondary hypersomnia is caused by issues such as sleep apnea, depression, medication side effects, and some other chronic medical conditions like hypothyroidism. Primary hypersomnias are “sleep disorders of the central nervous system that include narcolepsy type 1, narcolepsy type 2, and idiopathic hypersomnia,” says Nancy Foldvary-Schaefer, DO, MS, a professor of neurology at the Cleveland Clinic Lerner College of Medicine. “Each condition has distinctive clinical features, and testing is needed to confirm diagnosis,” she adds.

What is the Difference Between Narcolepsy Type 1 and Type 2?

Dr. Foldvary-Schaefer says that narcolepsy type 1 is the most recognized type of narcolepsy and is easier to diagnose than narcolepsy type 2. While both types share symptoms like daytime sleepiness, cognitive difficulties, sleep paralysis, and hallucinations, patients with narcolepsy type 1 also experience cataplexy. Cataplexy is a sudden muscle weakness triggered by strong emotions and occurs when REM sleep briefly intrudes into wakefulness. “Cataplexy defines type 1, and patients may experience their jaw dropping, head sagging, knees buckling, or complete loss of muscle tone that causes them to fall to the ground.” These episodes are temporary and may last just a few seconds or minutes.

In addition to cataplexy, narcolepsy type 1 also has low or no levels of orexin, a brain chemical that helps regulate wakefulness. Dr. Foldvary-Schaefer explains, “Without [orexin], it is difficult to stay awake during the day, and nighttime sleep is often disrupted by vivid dreaming, disruptive sleep, and sleep paralysis.”

Leah, who is now a 22-year-old college graduate in the first year of a PhD program, confirms that she had some symptoms in common with narcolepsy type 1, such as extreme daytime sleepiness and struggling with “dreams and hallucinations that caused a lot of distress when I fell asleep.” However, cataplexy has never been an issue for her.

Unlike type 1, narcolepsy type 2 does not include cataplexy and there is no known biological marker to help diagnose it. Dr. Foldvary-Schaefer explains that patients with narcolepsy type 2 typically have milder symptoms than those with type 1. It’s possible that people with narcolepsy have different levels of orexin ranging from moderate to severely low, or that the orexin pathway is somewhat blocked, but researchers don’t know this yet.

Like patients with narcolepsy, people with idiopathic hypersomnia often experience brain fog, daytime sleepiness, and unrefreshing sleep. Unlike either type of narcolepsy, idiopathic hypersomnia causes sleep inertia, which is a severe and prolonged feeling of grogginess that makes it very difficult to get out of bed in the morning.

Narcolepsy Type 2 and Idiopathic Hypersomnia Can Be Difficult to Diagnose 

Diagnosing narcolepsy type 2 and idiopathic hypersomnia is harder than diagnosing narcolepsy type 1, and this difficulty negatively impacts many patients. Dr. Foldvary-Schaefer says Leah’s experience of a quick and early diagnosis is not typical. “It’s a very common story for a diagnosis to take 10 to 20 years.” It’s estimated that these disorders affect one in 2,000 people, but she thinks that number is higher because patients’ sleepiness is often blamed on other things.

Sara Benjamin, MD, medical director of the Johns Hopkins Center for Sleep and Wellness, says the difficulty in diagnosing narcolepsy type 2 and idiopathic hypersomnia is partially because daytime sleepiness is so common in our society and sleepiness may have many causes. “Patients who sleep a lot are often told they’re depressed. Sometimes they are, but it’s important to consider the difference between fatigue, which is feeling draggy and low energy, versus falling asleep while doing things.”

Before making a diagnosis, Dr. Benjamin first learns the patient’s medical history to see whether things like medications or basic lack of sleep could explain their symptoms. She uses the Epworth Sleepiness Scale—an eight-question self-assessment—to determine how likely someone is to fall asleep doing specific tasks as opposed to just feeling tired.

If the test results suggest a hypersomnia condition, Dr. Benjamin says the next step is for the patient to track their sleep habits with a sleep diary for several weeks. Then they undergo two important tests: an overnight sleep study and a daytime nap study called the Multiple Sleep Latency Test (MSLT). These are the same tests Leah completed at age 15 to confirm her narcolepsy type 2 diagnosis.

The overnight test checks whether patients have sleep apnea or a different disorder that might cause sleepiness after a full night’s sleep. The MSLT takes one full day to complete, and patients are given five opportunities to fall asleep every two hours.

If a patient falls asleep in an average of eight minutes or less during the five naps, then they meet the criteria for a primary hypersomnia diagnosis. If a patient also falls into REM sleep during at least two of the naps on the MSLT (or goes into REM sleep within 15 minutes during the overnight study and during at least one nap on the MSLT), they meet the criteria for a narcolepsy diagnosis. Dr. Benjamin says, “Based on test results and clinical data including a toxicology screen that shows sleepiness isn’t caused by a substance, we can diagnose.”

Both Drs. Benjamin and Foldvary-Schaefer say current testing isn’t completely perfect and should only be performed by an experienced doctor due to the complexity of how the data needs to be interpreted. Dr. Foldvary-Schaefer explains that patients should not be sleep-deprived during the test and need to be weaned off any substance or medication they’ve used to manage sleepiness. “One of the most important messages for physicians—and patients who may be undiagnosed—is that the Multiple Sleep Latency Test can miss the diagnosis 30 percent to 40 percent of the time. It could be worth retesting for some people who have normal test results and still have disabling symptoms,” she adds.

What Treatment Options Are Available?

Dr. Foldvary-Schaefer says that treatment options for hypersomnia remained unchanged for many years. Treatment mostly relies on stimulants, which help people stay awake during the day but don’t treat other symptoms of hypersomnia and can cause side effects. At this time, there is no single solution that works for everyone, and most patients manage their symptoms with a combination of medications and changes to their daily routines.

There are several medications used to treat excessive daytime sleepiness such as pitolisant, modafinil, armodafinil, solriamfetol, and sodium oxybate. Pitolisant and sodium oxybate may be used to treat cataplexy, and low-sodium oxybate has been FDA-approved for idiopathic hypersomnia.

Leah tried modafinil when she was first diagnosed but experienced a side effect and had to stop the medication. She also tried several stimulant medications, which helped some but not enough. About six months after her diagnosis, she switched to sodium oxybate, which “changed everything for me and made me feel completely functional. Since then, my typical sleepiness level is much closer to the average person’s experience, and I don’t fall asleep in situations when I shouldn’t.” 

Patients with narcolepsy type 1 may soon see a truly life-changing drug on the market—oveporexton. This drug is currently in late-stage FDA approval and is designed to treat the root cause of narcolepsy type 1 by replacing orexin, which will significantly improve wakefulness and reduce cataplexy. 

In addition to medical therapies, patients are strongly encouraged to incorporate lifestyle strategies like scheduled naps, strict nighttime sleep schedules, and cautious caffeine intake as part of their long-term management routine. While finding the right approach takes time, Dr. Foldvary-Schaefer says that a good routine is key to improved quality of life. “It’s so important for people with hypersomnia disorders to remember not just to take medications but to do the basics like protect sleep.”

Leah has experienced firsthand how important the combination of good sleep habits and medication can be—although it can be tricky when trying to balance social life, physical activity, and a demanding graduate program. “I really have to value my sleep schedule because it’s important to how my medication operates. I am pretty consistent, though there are times when I prioritize fun or extra deadlines that may take me off track for a few days, and I have to get back to my normal routine.”

Narcolepsy and Mental Health Challenges and Stigma

There is a connection between narcolepsy and secondary mental health challenges. Being constantly exhausted can make life feel overwhelming, which can lead to anxiety or depression, which then makes sleep even more difficult—it’s a never-ending cycle.

Since it’s very difficult to prevent primary hypersomnia symptoms, Dr. Foldvary-Schaefer says raising awareness is key to helping people get the right treatment and improve their physical and mental health. “So many people don’t know about these disorders or just think they’re night owls or sleepy people or depressed and are embarrassed to talk about it or consider that they may have a brain disorder.”

Narcolepsy and other hypersomnia disorders are complex, often misunderstood conditions that affect far more than just sleep. They can shape a person’s education, career, relationships, and mental health, especially when diagnosis is delayed or symptoms are dismissed. Getting the right diagnosis and treatment can make a life‑changing difference.

There is still much to learn about these disorders, but growing awareness, better testing, and expanding treatment options are helping more people get the support they need. Recognizing excessive sleepiness as a medical issue—not a personal failing—is a crucial step toward reducing stigma and improving quality of life for those living with these conditions.