Negating Narcolepsy

Lately, I have been falling asleep while on my laptop during the mornings. I don’t know if it’s the meds I’ve been taking but it is definitely a slight concern. I doubt it’s a case for narcolepsy but I was reminded of the condition recently when I saw the headline regarding a date rape drug, GHB, being used to treat narcolepsy.

Narcolepsy is a rare, chronic sleep disorder marked with overwhelming daytime drowsiness and sudden attacks of sleep. It is estimated that anywhere from 135,000 to 200,000 people in the United States have narcolepsy, according to the National Institute of Neurological Disorders and Stroke.

While daytime sleepiness is the main symptom of narcolepsy, other symptoms may include cataplexy, which is sudden loss of muscle tone or strength brought on by strong emotions such as laughter, fear, surprise, or anger. These episodes range from a brief buckling of the knees to drooping eyelids with the body in a state of total paralysis.

Other symptoms include sleep paralysis (usually lasts from a few seconds to minutes), disrupted nighttime sleep, hallucinations (very vivid and disturbing enough to react to once awake), automatic behavior (e.g. falling asleep for a few seconds while eating and have no memory of doing so and continue doing whatever you were doing before falling asleep).

People with narcolepsy have low levels of the neurons that secrete a particular message-carrying chemical called hypocretin (orexin). Hypocretin is important for regulating the wake/sleep cycle in our bodies. With these neurons gone, changes between wake, REM sleep, and non-REM sleep can happen spontaneously. Other possible causes of narcolepsy may include an autoimmune disease that could be attacking the cells that produce hypocretin, family history, brain injury or tumor, infections or exposure to toxins.

There are two types of narcolepsy: type 1 narcolepsy or narcolepsy with cataplexy where you can have low levels of hypocretin or reporting cataplexy and excessive daytime sleepiness on a special nap test; and type 2 narcolepsy or narcolepsy without cataplexy where you have excessive daytime sleepiness without muscle weakness and normal levels of hypocretin.

In addition, researchers have identified a gene linked to narcolepsy. About one-quarter of the general population in the United States carries the genetic marker for narcolepsy, but only one person out of about 500 of these people will develop narcolepsy.

Narcolepsy tends to begin around childhood, adolescence, and young adulthood (age 7 to 25) but can occur at any age. The condition affects men and women equally. People with narcolepsy can spend years trying to get an accurate diagnosis of their condition. The average time between the onset of symptoms and diagnosis is seven years. If left untreated, narcolepsy can seriously interfere with daily tasks and responsibilities, not to mention leaving you open to dangerous life- threatening situations (e.g. falling asleep while driving).

What happens usually when you go to sleep is that a person enters rapid eye movement (REM) sleep after about 60 to 90 minutes. Dreams occur during REM sleep, the brain keeps the muscles limp during this sleep stage, which prevents you from acting on your dreams. But people with narcolepsy usually enter REM sleep quickly, within 15 minutes of falling asleep. The muscle weakness or dream activity of REM sleep can occur while you are awake or be absent during sleep.

Narcolepsy is a lifelong condition. Some symptoms may diminish over time but there is no cure. For instance, some people may have cataplexy attacks once or twice in a lifetime while others have them as frequently as many attacks during a day.

What is interesting about narcolepsy is how the symptoms manifest and are very pronounced dependent on the person with it. For instance, you could fall asleep brushing your hair or experience cataplexy when someone tells a joke.

Narcolepsy is diagnosed after your doctor has taken a complete medical and sleep history, physical exam, medication history, and performed sleep studies. You might have to wear a wrist sensor for a few weeks or keep a sleep diary to record your sleep patterns (e.g. did you fall asleep easily? Or how many hours did you sleep?).

Two important types of sleep studies to confirm you have narcolepsy are polysomnogram (PSG) and the multiple sleep latency test (MSLT) which are usually performed in a sleep disorders center and require an overnight stay.

Narcolepsy is treated with medications. Your physician may prescribe wake-promoting medications such as modafinil (Provigil) or armodafinil (Nuvigil); sodium oxybate (which is the only FDA-approved medication used to treat daytime sleepiness and cataplexy); stimulants such as amphetamine/dextroamphetamine or dextroamphetamine mixed salts (Adderall, Dexedrine) and methylphenidate (Ritalin, Focalin, Concerta); and antidepressants such as tricyclic antidepressants (TCAs) and selective serotonin reuptake inhibitors (SSRIs) like protriptyline (Vivactil) and fluoxetine (Prozac).

Your doctor may also suggest lifestyle changes such as following a regular sleep/wake schedule, keeping your bedroom as quiet as possible (no TV, laptop or phone), short naps, no smoking, no alcohol or caffeine close to bedtime. Other choices may include a consistent exercise regimen, which may provide a more restful sleep and relaxation methods like aromatherapy, yoga, meditation, or even a warm bath may help to promote healthier sleep patterns.

I don’t have narcolepsy but I sympathize with those of you that are diagnosed with the condition. But hopefully, with the right treatment in place you can know what it is like to feel nothing but alert and awake during the daytime after a good night’s sleep.