Narcolepsy

10 Shocking Things about Narcolepsy that the Media Doesn’t MentionNarcolepsy isn’t the snoozefest we imagined. It’s a fascinating neurological disorder with aspects of dream sleep sneaking into daily life in odd ways like experiencing hallucinations and being paralyzed head-to-toe.

Surprised? I was too — when I was diagnosed 8 years ago in law school.

Julie Flygare, JD — founder of Project Sleep and author of “Wide Awake and Dreaming: A Memoir of Narcolepsy”

Hi! I’m Julie Flygare, a writer and yogi living with narcolepsy in Los Angeles. Here are the most shocking things you didn’t know about narcolepsy and the media doesn’t mention:

10.Narcolepsy is not a joke. 
As a young law student at Boston College, I realized I was having mysterious health issues but — narcolepsy?! “Nooo, that’s just a joke about someone falling asleep standing… I don’t have that!”

Popular films like Rat Race, Deuce Bigalow: Male Gigolo and Moulin Rougefeature comical characters with “narcolepsy” falling asleep mid-sentence while standing. This is not what doctors are looking for to diagnose narcolepsy. Narcolepsy’s sleepiness is often much more invisible and pervasive, and that’s just ONE of five major symptoms. Yet, because of the comedic portrayals, people often laugh when they learn I have narcolepsy, even though I have a serious neurological disorder like epilepsy or Parkinson’s disease.

9.People with narcolepsy do NOT sleep all the time.
Individuals with narcolepsy may fight sleepiness during the day but be unable to sleep at night. “Disrupted nighttime sleep” is a major symptom of narcolepsy. Check out this amazing graphic by Falling Asleep.

8.Emotions may cause scary paralysis.
Everyday emotions like laughter, surprise or annoyance may cause scary temporary muscle paralysis — jerky knee-buckling, jaw slackening(talking like you’re drunk), head bobbing or collapsing to the ground unable to move for 30 seconds to a minute. This is cataplexy, a very serious symptom affecting 70% of people with narcolepsy.

7.Napping is not a luxury.
People with narcolepsy are not “lucky” to take naps, they are experiencing extreme neurological sensations. Napping is often inevitable, unwelcome and difficult to plan for in most school or work settings. I struggle with “nap shame” — feeling embarrassed or weak for napping, even though it’s an essential part of my treatment to be able to work full-time and exercise daily.

6.Narcolepsy involves terrifying hallucinations.
Ever woken up but been unable to move your body? This is sleep paralysis, which happens to 1/3rd of all people, but happens more frequently in narcolepsy. Sometimes accompanied by visual, auditory or tactile hallucinations as REAL as reality. This redefines “living a nightmare”.

5.Doctors don’t know narcolepsy.
According to a recent study, 91% of primary care doctors and 58% of sleep specialists are NOT COMFORTABLE diagnosing narcolepsy. Only 22% of sleep specialists could name all five major symptoms. As a result, people go undiagnosed for 3 to 25 years. Misdiagnoses include epilepsy, depression, and schizophrenia.

4.Sleepiness doesn’t always LOOK sleepy.
Narcolepsy’s sleepiness may manifest as hyperactivity, irritability, moodiness, attention deficits, fogginess, or memory problems. These behavioral and cognitive changes are very real, but not what we think of “sleepiness” — i.e. droopy eyelids, yawning or nodding off.

3.Neurological disorder without a cure.
The leading theory is that narcolepsy may be an autoimmune disorder caused by the loss of cells in the brain (called hypocretin or orexin) which help regulate waking, sleeping and dreaming. There is currently NO cure or replacement for the lost neurons. Patients manage with multiple medications and diligent attention to their health and schedules. No two cases of narcolepsy are exactly alike — what works for one patient may not work for another.

2.Sleepiness is NOT laziness.
The sleepiness of narcolepsy is neurological and uncontrollable and is not a sign of laziness or lack of will power. Imagine staying awake for 2–3 days straight. That’s how a person with narcolepsy feels daily. If I felt like being lazy, I would watch TV or play games. Sleep is not that fun, I don’t even remember it.

1.You know someone with narcolepsy.
Narcolepsy affects 1 in every 2,000 people — 200,000 Americans and 3 million people worldwide, including many children. Narcolepsy is invisible, we may look “healthy” on the outside while fighting internally or behind closed doors. Misperceptions cause many to keep it private. Yet, people with narcolepsy are your friends, neighbors and colleagues.

Source -Medium