Narcolepsy is a chronic neurological condition that impairs the brain’s ability to regulate the sleep-wake cycle. It affects 1 in 2,000 people; 200,000 Americans and 3 million people worldwide.
Narcolepsy symptoms vary by person but may include:
There are two forms of narcolepsy: type 1 narcolepsy with cataplexy, and type 2 narcolepsy without cataplexy. Recent research suggests that type 1 narcolepsy with cataplexy is caused by a lack of hypocretin (also called orexin), a key neurotransmitter that helps sustain alertness and regulate the sleep-wake cycle. Less is known about type 2 narcolepsy without cataplexy.
Seeing a sleep specialist is recommended for people who are experiencing symptoms that indicate you may be living with narcolepsy.
Diagnosis typically relies on a 24-hour sleep study that includes a nighttime portion (polysomnogram) and daytime nap portion (multiple sleep latency test). The diagnosis is mainly based on how quickly and frequently one’s brain enters rapid eye movement sleep (REM)/dream sleep during these tests.
There is currently no cure for narcolepsy. Treatment for symptom management varies widely by person and it often takes a long time to find the right combination of treatments.
Nighttime or histamine-directed medications can be used to decrease excessive daytime sleepiness and cataplexy.
Wake-promoting or stimulant medications can be used to increase alertness.
Antidepressant medication can be used to decrease cataplexy.
Scheduled daytime naps are an important part of treatment for many people.
Social support in the form of meet-up groups or on social media can help people with narcolepsy and their families to live well with narcolepsy.
Improvement in general health and wellness through sleep hygiene, diet, and fitness can help improve overall quality of life for people with narcolepsy.
Because of low awareness (even among physicians) and misperceptions, there is an average of 8 to 15 years between narcolepsy symptom onset and diagnosis. It’s estimated that the majority of people with narcolepsy are currently undiagnosed or misdiagnosed. Common misdiagnoses include epilepsy, depression, and schizophrenia.
If you suspect that you or a loved one could have narcolepsy, it is important to consult an AASM board-certified sleep medicine doctor. To find a local sleep specialist or accredited sleep center, visit www.sleepeducation.org.
Public misperceptions of narcolepsy lead to delayed diagnosis and treatment.
For more information and resources, please visit Narcolepsy Network and Wake Up Narcolepsy. Please also download our free, printable Narcolepsy Fact Sheet for a handy resource to share with friends, family, and medical providers.
The Narcolepsy Nerd Alert series invites fellow #NarcolepsyNerds to explore aspects of the narcolepsy experience, contemplate bold questions, and learn from each other.
Project Sleep’s Rising Voices program serves the dual purpose of fostering a new generation of patient-advocates spreading awareness of sleep disorders while empowering participants.
