Narcolepsy: What We All Should Know
By Dr. Rubin Naiman
Narcolepsy. Though many recognize the word, relatively few of us know what it really means. And why should we? As far as sleep disorders go, it’s not nearly as common as insomnia or apnea. And let’s face it, it doesn’t sound very sexy either. (As one patient put it, “Combining ‘narc,’ and ‘olepsy,’ sounds like an epileptic narcotics agent to me.”) Actually, the term literally refers to sleep attacks. But it’s so much more complex and interesting than that.
Why should we all know more about narcolepsy? First, many if not most persons with narcolepsy (PWN) remain undiagnosed and, therefore, are not receiving the treatment and support they need. The majority of PWN that I’ve seen in my practice had initially been misdiagnosed with conditions like chronic fatigue syndrome or depression. Narcolepsy can be terribly challenging, and it’s critical that both the public and professionals become better informed about its signs and symptoms. Still another compelling reason for all of us to get more informed about narcolepsy is that it can teach us so much about sleep and dreams and even life itself.
So, what is narcolepsy? In short, it’s a condition in which the boundary that ordinarily segregates waking consciousness from the world of sleep and dreams becomes exceptionally permeable. For most of us, sleep is largely walled off during the day. In narcolepsy, sleep readily slips into and out of waking consciousness.
Normally, sleepiness accrues gradually through the waking day, reaches its peak at night, and is then discharged with sleep. It’s a bit like urine accumulating in a bladder and then reaching a threshold where it insists on being emptied. Metaphorically speaking, PWN have a small “sleepiness bladder.” They can’t hold accumulating sleepiness for long stretches without nodding out for short periods. Just as a small bladder might require one to get up and urinate frequently at night, a small “sleepiness bladder” can force one to get down and sleep repetitively by day.
PWN are not only excessively sleepy, they are also excessively “dreamy.” Elements of REM sleep can also slip readily in and out of waking, resulting in a range of most peculiar dream-related experiences. Many PWN have episodes of cataplexy — a sudden intrusion of severe muscle weakness (normally associated with nighttime dreaming) that is triggered by strong emotion, especially laughter. Many PWN are also “big dreamers” — that is, their dreams both by night and day are extraordinarily vivid and woven intensely into the fabric of their waking lives.
Narcolepsy, which can occur in children and adults, ranges from mild to severe and is sometimes associated with traumatic brain injury. The majority of PWN, however, appear to have a genetic predisposition for an autoimmune process that essentially compromises the brain’s sleep bladder. In addition to excessive daytime sleepiness, cataplexy and dream issues, PWN may also struggle with poor nighttime sleep, nightmares and sleep paralysis. Unfortunately, these symptoms can lead to social isolation and depression. While some PWN are disabled by their condition, others, perhaps as a result of their extraordinary challenges, become extraordinarily creative and productive individuals.
The most common conventional treatments for PWN include stimulant medications that bolster daytime wakefulness and hypnotic medications that promote nighttime sleepiness.
Antidepressants are also commonly used to treat associated mood concerns and to suppress cataplexy. Behaviorally, scheduled naps are usually a key component of conventional treatment.
I have long been an advocate of an integrative medicine approach to narcolepsy, one that brings together the best of conventional and complementary and alternative approaches. An integrative approach utilizes nutrition, exercise, stress management, light therapy, mindfulness, expressive arts, dream work and various body-mind techniques to manage the condition.
In a world where sleep and dreams are so undervalued, misunderstood, disordered and mismanaged, there is much we can learn from narcolepsy. Narcolepsy-related research has contributed considerably to our understanding of sleep and sleeplessness, something that benefits all of us. Narcolepsy also reminds us that there is an essential place for sleep in our wake-centric world.
Because they do not have the luxury of denying the importance of sleep in their daily lives, PWN are called upon to better understand, adapt and cope with a world that sets impossibly high standards for waking life — a world that measures human worth largely in terms of productivity rather than personal experience and relationship. Narcolepsy boldly challenges the commonly-held belief that daytime sleep and productivity are at odds. One of my patients with severe symptoms is a successful and creative professional who earned two advanced degrees while raising a large family.
My original interest in narcolepsy stemmed from its dream-related symptoms. I’ve long been concerned about the unexamined erosion of dreaming in modern life and its associated health consequences. Narcolepsy offers us a unique window into what might be considered an abundance or even excess of dreaming. PWN can teach us much about a kind of free, uninhibited and wild dream life that is rare in our world today. Some PWN use their rich dream experiences in support of artistic endeavors in music, dance, writing and painting. Others find their dreams can serve as portals to a deeply personal spirituality.
Every fall the Narcolepsy Network, a non-profit national advocacy group, sponsors an annual meeting that provides essential information updates as well as much needed social support for PWN. I’ve had the privilege of attending these meetings for over a decade now and have been especially moved by the depth of empathy and compassion there. Its like being in a parallel universe that looks exactly like this one but where no one is judged or pestered for nodding out even at the most inopportune times. It’s a world where sleep and dreams are deemed as important as waking life.