When you think of sleep disorder, you think of insomnia or sleep apnea. They have their risks, and shouldn’t be left untreated.
However, the most dangerous sleep disorder is also one that is little-understood: narcolepsy.
But what is it, exactly?
Narcolepsy is a chronic neurological disorder caused by a loss of the brain’s neurotransmitters that regulate sleep-wake cycles. A groundbreaking study published in the December 2013 issue of the journal Science Translational Medicine, said that narcolepsy appears to be an autoimmune disease, killing the cells that produce the transmitters. While affecting some 250,000 Americans, it’s believed that fewer than a quarter of those living with the disorder are actually diagnosed.
It’s more than just a sleep disorder, it’s a complete neurological disorder.
As a result, the body sometimes just…shuts down. One of the main symptoms is “cataplexy”, or the entire body going limp when it’s aroused (laughter, anger, extreme emotion).
50% of narcoleptics suffer cataplexy, and the vast majority of cataplexy is due to narcolepsy. For narcoleptics, this makes everyday tasks a challenge, like driving, handling sharp or delicate objects, or something as simple as crossing the street. In each of these situations, losing muscle tone or collapsing could mean death.
Narcoleptics sleep differently than most people. REM sleep, or deep sleep, usually doesn’t happen for 1-2 hours after most fall asleep. But for narcoleptics, it happens immediately for a short burst. And then again later in the day. And then again. Essentially, the entire day is an uphill battle to obtain restful sleep.
differences in brain function after using a narcolepsy treatment drug, modafinil
Narcolepsy is not entirely untreatable, but options are limited:
Aside from the expense, Xyrem and other drugs prescribed to treat the disorder are a source of frustration for narcoleptics because their efficacy differs for each patient. A great deal of experimentation usually occurs before a patient finds the right combination of drugs. It’s also possible for some to experience side effects so severe that their only option is to stay away from all medication and try to find other ways to cope with their narcolepsy.
Stay-awake drugs like Ritalin and Provigil are also used to treat narcolepsy, but can become addictive and lose effectiveness over time.
The most important healing tool in a narcoleptic’s life is the presence of caring family and friends who know their triggers, can get them up for work, and help them through difficult days.
The disorder is not uncommon either:
Although four times more common than cystic fibrosis and nearly comparable in frequency to multiple sclerosis and Parkinson’s disease, narcolepsy is often mistaken for depression, epilepsy, bipolar disorder, learning impairments, or dismissed as laziness.
If you suspect that you or a loved one may be suffering from narcolepsy, find a sleep doctor (your local university’s medical research center may also help) to request a Multiple Sleep Latency Test, which can confirm a diagnosis. It’s not too late, and it may save someone’s life.