MARCH IS NATIONAL SLEEP AWARENESS MONTH
[by Tamara Sellman RPSGT CCSH for Advanced Cardiovascular Sleep Disorders Center]
This Saturday, March 10, might be a great way to sleep in... for as much as 48 hours, to raise awareness about a sleep disorder known as narcolepsy.
Our state of Alabama has already joined in this important proclamation and recognition, joining Arizona, Georgia, Idaho, Illinois, Indiana, Montana, Nebraska, New Jersey, Pennsylvania, South Carolina, South Dakota, Texas, Virginia, Washington, West Virginia, and Wisconsin. (If you have friends or family in other states, check out this map to see if proclamations have been filed in their states; if not, encourage them to request their state leaders to recognize this annual event.)
The Narcolepsy Network has two main goals in mind for their Suddenly Sleepy Saturday campaign: to raise awareness about this unusual and undertreated condition and to help encourage support for its sufferers through research funding, community-wide acknowledgment, and public education.
"Suddenly Sleepy Saturday falls on the day before Americans turn their clocks ahead one hour for daylight savings time," the organization states at their website, "a time when even those who do not have narcolepsy may experience sudden sleepiness or daytime drowsiness, just as people with narcolepsy do every day."
The national awareness campaign is designed to educate communities about a somewhat rare but often disabling condition in which a person literally struggles to remain awake and alert every day of their lives.
What is narcolepsy?
People with narcolepsy sleep at least eight hours a night but may still feel foggy, drowsy, and fatigued throughout the day. In some cases, any sudden emotional experience can trigger a symptom called cataplexy, in which the person loses complete muscle control of their body and appears to suddenly fall asleep.
Other symptoms include nightmarish encounters with sleep paralysis, hallucinations at sleep onset or upon awakening, and fragmented sleep throughout the night.
Who gets narcolepsy?
This affliction affects about 200,000 people in the United States and about three million people worldwide. Increases in new diagnoses suggest that narcolepsy may be more prevalent than doctors thought.
In fact, according to the Narcolepsy Network, as many as only one quarter of those with narcolepsy are actually diagnosed and treated for this unusual disorder.
The average time it takes to properly diagnose a person with narcolepsy is seven years due to its resemblance to certain other kinds of conditions; it is also frequently misdiagnosed as depression, sleep apnea, or primary insomnia.
Narcolepsy strikes people when they are young, between the ages of 10 and 30—far afield of previous characterizations, the inaccurate caricature of an elderly Mr. Magoo being the most prominent. It manifests as an imbalance in a wakefulness hormone called orexin (also known as hypocretin). This imbalance makes it difficult for the circadian system to manage a normal sleep-wake cycle and leads to inappropriate levels of daytime drowsiness (as well as nighttime wakefulness) that are so difficult to resist that they can become life altering.
For thousands of young people across Europe, a particular strain of flu vaccine is thought to have contributed to a steep increase in new cases of narcolepsy among young people.
How is narcolepsy treated?
The causes and mechanisms that lead to narcolepsy are still elusive and under intense scrutiny by researchers. Because it is considered a rare disease, it's one of many conditions that does not receive adequate funding to better identify causes, treatments, or cures.
However, according to statistics at the Narcolepsy Network website, researchers have identified a genetic association to narcolepsy, and a genetic marker for the sleep disorder is known to be present in about a quarter of all Americans, though only one out of about 500 of these will go on to develop narcolepsy.
People with narcolepsy have very few options for treating the disorder, and these are mostly pharmaceutical:
- orexin-enhancing agents like modafinil (Provigil) or armodafinil (Nuvigil) to fight against extreme daytime fatigue, which can be so disabling as to prevent normal activities like holding a job, grocery shopping, or household chores
- stimulants like Adderall (amphetamine and dextroamphetamine) and Ritalin (methylphenidate), and
- a nighttime treatment known as sodium oxybate, which is used to help consolidate sleep at night in order to defend against daytime sleepiness.
Other medications for narcolepsy are in the pipeline but funding, tolerance, and safety issues are an ongoing concern.Other non-drug approaches are designed to reduce the severity of symptoms only and include vigilance in practicing good sleep hygiene and some alternative therapies which are known anecdotally to provide some relief.
How does sleeping in on Saturday raise awareness about narcolepsy?
Staging a "sleep-in" to "make peace with sleep" can be a fun way to raise awareness. This campaign, organized by Project Sleep, challenges you to ask your friends and family to sponsor you with donations toward your Sleep In, in which you stay in bed this Saturday for between 12 and 48 hours.
Not only will you experience what living with narcolepsy feels like, you will raise awareness of this disorder, especially if you share your observations through favorite social media channels like Facebook and Instagram using the tags #SleepIn2018 and @Project_Sleep.
Other suggested ways to pass the time include:
- making posters (share with tagged selfies in social media)
- building pillow forts (share with tagged selfies in social media)
- staging pillow fights (share with tagged selfies in social media)
- watching this free webinar on narcolepsy, "For People with Narcolepsy, Shortening the Diagnostic Turnaround Time," provided by Sleep Review
- turning your bedroom into a sleep sanctuary
- treating yourself to an in-bed spa day: facial, manicure, pedicure, massage
- practicing yoga
- reading (the novel, The Lathe of Heaven by Urusula K. Le Guin, the short-story collection Stay Awake by Dan Chaon, the narcolepsy memoir, Wide Awake and Dreaming by Julie Flygare, or the recently released Why We Sleep: The New Science of Sleep and Dreams by Matthew Walker)
- watching sleep-related feature films (i.e. Sleepwalk With Me or The Science of Sleep) or documentaries (The Nightmare or Sleepless in America)