If you often have sudden episodes of extreme sleepiness, you could have narcolepsy. Working with a sleep specialist can help you get the right diagnosis.
It’s natural to feel tired at times. You might experience daytime drowsiness for any number of reasons, including a lack of sleep, a busy schedule, or health conditions.
But maybe you get enough sleep each night and still find yourself extremely drowsy during the day. These periods of sleepiness might feel like “
This neurological condition disrupts how your brain manages your sleep-wake cycles. Symptoms of narcolepsy include:
- excessive daytime sleepiness
- cataplexy, or sudden episodes of muscle limpness or weakness that often happen when you laugh, cry, or experience strong emotions
- sleep paralysis
- vivid hallucinations that happen as you fall asleep or wake up
Here’s what to know about getting a narcolepsy diagnosis.
In the U.S., the most current versions of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR) and the International Classification of Sleep Disorders (ICSD-3) set the guidelines for a narcolepsy diagnosis.
Mental health professionals and general practitioners will likely use the DSM-5-TR, while experts who focus on sleep medicine may use the ICSD. But the rate of diagnosis remains roughly the same.
If you started your journey with a therapist, psychiatrist, or primary care doctor, they’ll probably use the DSM-5-TR to assess your symptoms.
According to the DSM-5-TR, you may receive a narcolepsy diagnosis when:
- you’ve experienced periods of unavoidable sleepiness, lapsing into sleep, or napping multiple times throughout the day, at least 3 times a week over the last 3 months
- you’ve experienced at least one of the following:
- irregular rapid eye movement (REM) periods or nighttime sleep latency, which is the time it takes you to fall asleep
If you have narcolepsy, your diagnosis will include a “specifier,” or subtype based on your specific symptoms and their severity.
Type 1 and type 2 are the most common forms of narcolepsy, though some diagnostic guidelines recognize as many as 5 subtypes.
If your doctor refers you to a sleep specialist, they may use the ICSD-3 to diagnose your symptoms. This manual draws a clear line between narcolepsy type 1 and type 2.
According to the ICSD-3, you may have type 1 narcolepsy if you:
- have experienced an irresistible need to sleep or daytime lapses into sleep for the last 3 months
- have experienced at least one of the following:
- cataplexy with irregular sleep latency and REM periods
- low levels of hypocretin, a brain hormone linked to some types of narcolepsy
You may have type 2 narcolepsy if your symptoms don’t relate to other health conditions or substance use and if you:
- have experienced an irresistible need to sleep or daytime lapses into sleep for the last 3 months,
- experience irregular REM or sleep latency periods
- have never experienced cataplexy
- have typical levels of hypocretin
Anyone can develop narcolepsy. It affects people of all genders equally, though it’s fairly rare: an estimated
The majority of people living with narcolepsy start noticing symptoms between the ages of
This may, in part, relate to the fact that narcolepsy’s symptoms aren’t always obvious. In fact, narcolepsy can resemble many other sleep, health, and mental health conditions, including:
Cataplexy is the symptom most unique to narcolepsy, but not everyone with narcolepsy experiences these periods of muscle weakness — and the absence of this symptom may delay diagnosis.
Stereotypes can also complicate the process of getting a diagnosis. Many people associate narcolepsy with abrupt sleep. And certainly, narcolepsy may cause you to lapse into sleep against your will, but not everyone experiences this.
If you don’t fall asleep in random places, you might simply link your symptoms to other things in life that make you feel tired.
Medical doctors and mental health professionals can help diagnose narcolepsy. You’ll typically want to start by working with one of these professionals since many sleep specialists require a referral before your consultation.
It can help to keep a sleep journal for at least a week or 2 before your appointment. A detailed history of your symptoms is an essential part of the diagnostic process, so your care team may ask you to start one as a first step.
After ruling out other potential causes of your symptoms, your care team will typically recommend the following:
- hypocretin level measurement
- polysomnogram (PSG) overnight sleep study
- multiple sleep latency test (MSLT)
These tests can offer more insight into your sleep patterns and whether low levels of hypocretin may play a part in your symptoms.
They can also help your care team rule out other sleep disorders that involve similar sleep-wake disruption.
Common prescription medications include:
- stimulant medications
- sodium oxybate (Xyrem)
- pitolisant (Wakix), a histamine 3 receptor antagonist
Your care team may also suggest:
- avoiding caffeine or alcohol before bed
- avoiding smoking cigarettes
- trying a relaxing bedtime routine
- exercising regularly
- avoiding large or heavy meals before bedtime
Future treatment possibilities
Experts are currently studying hypocretin therapy as a potential new approach to treating narcolepsy. This treatment would involve administering hypocretin directly into your body or implanting cells to increase your production of this hormone.
You may have narcolepsy if you experience excessive daytime sleepiness, sudden lapses into sleep, or brief episodes of muscle weakness.
This sleep-wake disorder is often difficult to diagnose, and many people live with the condition for years before it’s identified.
A doctor or mental health professional can help you take the first steps toward the right diagnosis and treatment. Narcolepsy can’t be cured, but treatment can make a difference.