According to the National Institute of Neurological Disorders an estimated 250,000 people have narcolepsy in the United States. And it's spreading. There are two types of narcolepsy, hereditary and developed. I have hereditary narcolepsy; it's in my blood, my DNA. Developed narcolepsy is contagious. It is caused by the flu and the common cold. You think you're safe because you haven't been diagnosed with narcolepsy by adulthood, but you're not.
The genetic cause of narcolepsy is unknown. It is a mystery disease indecipherable even by twenty-first century medicine. What is suggested is a strong connection between narcoleptic individuals and genetic conditions. Scientists know there is a correlation between chromosome six and variation in the HLA (human leukocyte antigen) genes. People with hereditary narcolepsy have reduced numbers of orexin protein production, which is responsible for controlling appetite and sleep patterns. Most people afflicted by narcolepsy inherit it, but abnormal reactions to illnesses can create a similar pattern of damaged cells in otherwise normal brains.
Narcolepsy is often misdiagnosed as depression, epilepsy, or the side effects of medication. The average delay between onset of symptoms and diagnosis is fifteen to twenty years. I myself was incorrectly diagnosed with depression at age seventeen and severe anxiety at age nineteen. But they were diagnosing my symptoms, not the underlying cause. I was put on Zoloft to alter my mood, Paxil to subdue my anxiety, and Xanax to stop panic attacks. I was a walking medicine cabinet, but it helped a little. The drugs they prescribed had stimulants in them to keep me awake. It was only when they took me off these medications that all hell broke loose.
To be fair, diagnosing narcolepsy can be difficult when not all of the symptoms are present. Often symptoms arrive one by one over the years between adolescence and adulthood. The symptoms' slow accumulation makes it easier for people to write off their symptoms to side effects and old age. Only when the symptoms become unbearable do people seek out medical attention. For many, this may be never. After correctly assessing the symptoms, doctors order two tests that are commonly used to confirm narcolepsy in patients. A polysomnogram, or sleep study, measures sleep cycles and brainwaves and compares them to normal readings. A multiple sleep latency test follows the next day, requires the patient to sleep for twenty minutes every two hours so that doctors can see how fast they fall asleep and start to dream. Normal people typically take between ten and fifteen minutes to fall asleep. A narcoleptic person falls asleep in less than five.
The sleep study was the most uncomfortable medical test I have ever had the misfortune of experiencing, and I've had many tests-several CAT scans, MRIs, and a particularly torturous one and a half hour test that checked the function of my gallbladder. The goal was to make me throw up after doctors injected me with radioactive material and a fatty substance.
Preparation for the sleep study took over an hour. I was connected to all manner of wires and electrodes, some thirty-two on my head and several on my body. They super glued the electrodes to my scalp and hair to make sure they stayed in for the next eighteen hours, strung wires from my legs through my clothes to a wonderful Velcro belt I was forced to wear. I was bionic. They plugged me into a wall. Against the pillow the electrodes pushed into my scalp like needles. There was no comfortable position; I could hardly turn onto my side. I was well and truly stuck, crisscrossed by wires. And last I was adorned with a breathing tube in my nose that cinched under my chin.
"Are you ready to sleep?" the nurse asked me.
"Sure."
"Would you like to try the CPAP machine? It's for sleep apnea patients. It makes you sound like Darth Vader." She proceeded to mimic the Star Wars character's breathing.
"Ah, no. I'm good," I said.
"Okay, we'll wake you up in the morning. There are a few tests we'll have you do over the intercom before you sleep to make sure the equipment works. There is a sound recorder above the bed and a night vision camera right over there to record your movements through out the night."
Nothing like being a bug under a magnifying glass.
"Goodnight, I'll tell the technician you're ready."
A few minutes after she left a disembodied voice came over the speaker system.
"Blink your eyes three times, please."
Ah, a game of Simon Says. I might as well play along.
"Good, now wiggle your toes. Look to the left. To the right. Up. Down. Okay, snore. Take three deep breaths. Good, everything seems to be working. See you in the morning."
The silence closed in around me. I couldn't stand the feeling. At home I always had a fan running during night. The camera blinked a red light every three seconds. Look at me. One. Two. Three. I'm watching your every move. I closed my eyes and took a deep breath. Ignore the pain, the isolation, the lack of privacy, and for the love of god don't wet the bed. There was no way I was going to sleep that night.
The nurses told me the next morning that I was out in less than ten minutes.
