Celebrate World Narcolepsy Day by Recognizing the Key Features

Narcolepsy is a chronic neurological disorder that impairs the brain’s ability to control the normal balance between sleep and wakefulness. Despite a full night of rest, people with this condition still tend to feel extremely sleepy throughout the day or fall asleep at unexpected and inconvenient times, like in the middle of a conversation or even while driving. To say the least, narcolepsy can have a great impact on daily activities. World Narcolepsy Day on September 22 aims to raise awareness of an overlooked—yet life-altering—neurological condition.

Approximately 135,000 to 200,000 people in the United States are impacted by narcolepsy. Many people with narcolepsy may be either undiagnosed, or misdiagnosed, so this number may be imprecise. Often, people with narcolepsy may be labeled as having "laziness," emotional issues, or psychiatric disorders like depression. But narcolepsy occurs due to the loss of a population of hypocretin-secreting cells within the hypothalamus of the brain. Both men and women are equally impacted by narcolepsy. Symptoms of narcolepsy can begin at any point in life. Even children can develop the condition.

Why Diagnosis Is Difficult

The diagnosis of narcolepsy is often delayed due to missed signs by medical providers. It may be best to seek evaluation by a board-certified sleep physician or neurologist to ensure that the symptoms are signs are not neglected. Unfortunately, the journey to understanding what exactly is going on may be unnecessarily prolonged.

“Due to low awareness, (the) average delays between symptom onset and diagnosis are between 8 to 15 years and the majority of people with narcolepsy are currently undiagnosed or misdiagnosed with other conditions. To me, this is unacceptable,” says Julie Flygare, President & CEO of Project Sleep, in an interview with Verywell Health. Project Sleep is one of 22 patient-advocacy organizations across six continents that helped establish World Narcolepsy Day in 2019. 

"Each patient-advocacy organization has its own set of goals and priorities, so I expect that each organization will celebrate in their own ways to advance awareness, education, support, research, and advocacy,” Flygare says. 

Awareness and education start, in part, by knowing the symptoms of narcolepsy. 

Common Symptoms

The most common symptoms people with narcolepsy experience are:

• Excessive daytime sleepiness: This is characterized by the feeling of persistent sleepiness despite adequate rest.
• Cataplexy: This is the sudden loss of muscle tone, control of muscles, or muscle weakness that occurs during wakefulness in response to an emotional stimulus. A classic example would be the muscles of the face, jaw, or neck sagging when laughing.
• Sleep paralysis: This involves a short period, usually occurring while falling asleep or just after waking up, when the affected person loses the ability to move or speak. It may be associated with other dream-like hallucinations.
• Hallucinations: This often includes vivid or frightening imagery, and sometimes involves other senses, such as sounds. The perception or experience of something that is not in the environment usually accompanies sleep paralysis. 

People with narcolepsy may also experience very fragmented sleep (disturbed sleep at night), often with frequent awakenings and associated insomnia. In addition, people with narcolepsy may sometimes have automatic behaviors (such as driving and losing track of parts of the trip or bypassing a familiar exit). 

Getting an Accurate Diagnosis

The symptom of unrelenting sleepiness alone may be enough to warrant evaluation for narcolepsy. In only 10 percent of people with type 1 narcolepsy, the first symptom to show up is cataplexy, making it unlikely to lead to a quick diagnosis.

To fully establish the diagnosis of narcolepsy, a polysomnogram (or an in-center sleep study) followed by a multiple sleep latency test (MSLT) must be performed. This testing will assess sleep stages by measuring the electrical activity of the brain, muscle activity, and eye movements, and it will even assess breathing patterns and leg movements to rule out other causes of sleepiness.

The daytime study, called multiple sleep latency testing (MSLT) analyzes how quickly a person falls asleep and how soon they drop into REM sleep. Those with narcolepsy will fall asleep within eight minutes on average. In addition, they will enter REM sleep in at least two of the observed naps.

Both tests are necessary for a diagnosis of narcolepsy.

Differential Diagnosis

Idiopathic hypersomnia, or excessive daytime sleepiness without a clear cause, is a condition that may have symptoms that overlap with narcolepsy, and it’s diagnosed in the same way. Both conditions impact over 3 million people worldwide. Idiopathic hypersomnia is also a chronic neurological disorder defined by the unsatisfiable need to sleep despite a full night of rest in the absence of another sleep disorder.

Advances in Treatment 

While there is no cure for narcolepsy, new medications are being developed. But more research is required to develop effective treatments that may greatly improve the quality of life for those affected by the disorder, and World Narcolepsy Day aims to help push that research along. 

Lifestyle changes such as scheduled naps or modification of caffeine and alcohol consumption may also help. Work accommodation and modifications may be required to ensure optimal job performance.

If left undiagnosed or untreated, narcolepsy can greatly impact academics, work, and social life due to its unrelenting influence on social, cognitive, and psychological function and development.

How to Support People With Narcolepsy

Join the World Narcolepsy Day celebration online and within your community! Check out what Project Sleep and the other organizations are doing by accessing more information on their website. 

Flygare suggests that individuals and local communities also host grassroot celebrations in their area, and encourage the powerful use of social media. "All stakeholders are encouraged to take part and raise their voices on social media using the hashtag #WorldNarcolepsyDay,” she says.

Consider seeking further involvement through the Narcolepsy Network.

If you have symptoms of excessive daytime sleepiness, you may also consider taking this day to finally arrange an evaluation by a board-certified sleep physician or neurologist. Testing can be arranged, and you may ultimately find an answer that may help you to relieve unrelenting sleepiness and live the life of your dreams.