Portal de Periódicos da CAPES

Narcolepsy: Let the Patient's Voice Awaken Us!

2014; Elsevier BV; Volume: 128; Issue: 1 Linguagem: Inglês

10.1016/j.amjmed.2014.05.037

1555-7162

Julie Flygare, Sairam Parthasarathy,

Circadian rhythm and melatonin

Patient experiences bring us closer to comprehending the humanity of caring for the sick–an experience that can only be better learned by practicing a lifetime of empathy and artful listening (See Inset 1). This is a “patient-centered” review, written by both a patient advocate and a sleep expert, that is followed by a conversation that intends to awaken the reader to the narcolepsy condition and give a keyhole view of the trials and tribulations of patients with such sleep problems.Inset 1Personal Story by Julie FlygareIn May of 2007, I woke up in my law school parking lot unsure how I got there. I remembered getting in the car and feeling sleepy on the highway but could not recall driving onto campus or parking. How had a 15-minute drive in the morning after getting 9 hours of sleep become dangerous? “Maybe I have a sleep problem,” I thought for the first time. A month later, I visited a primary care doctor, announcing, “I'm tired all the time and have trouble studying and driving, even short distances.”The doctor responded, “Everyone gets tired driving. Even I have to pull over to get a coffee sometimes.” The smallest voice inside me said, “I don't think she understands what I'm talking about.” Next, I brought up my knees buckling with laughter. I suggested perhaps it was neurological. The doctor said she'd never heard of anything like this. “I'll let you go to a neurologist but it's probably something you'll have to get used to.” I'd asked family members and friends, and another primary care doctor a year earlier, but to no avail. I was more lost than ever.The following week, I randomly mentioned my knee-buckling laughter to my sports therapist who thought she'd heard of something like that. She wrote “cataplexy?” on a piece of paper and handed it to me. Once home, I Googled “cataplexy” and knew within seconds that this was it. Cataplexy was associated with narcolepsy; a word I'd heard but thought was a joke. The dots began connecting.For individuals with sleep disorders, finding the right diagnosis is life changing. In my recent memoir,1Flygare J. Wide Awake and Dreaming: A Memoir of Narcolepsy. Mill Pond Swan Publishing, Venice, FL2013Google Scholar I describe this moment: “It was as if someone was holding a mirror up to show me the last few years of my life for the first time. My understanding of who I was and how I was living was changing rapidly … I shook in the silence of this lonely self-discovery.”I subsequently visited a sleep specialist who ordered the 24-hour sleep study, and I was diagnosed with a classic case of “narcolepsy with cataplexy.” In the 6 years since diagnosis, treatments, naps, and lifestyle adjustments have helped me to live successfully with narcolepsy. Diagnosed within 5 years of symptom onset, I am considered “one of the lucky ones.” In May of 2007, I woke up in my law school parking lot unsure how I got there. I remembered getting in the car and feeling sleepy on the highway but could not recall driving onto campus or parking. How had a 15-minute drive in the morning after getting 9 hours of sleep become dangerous? “Maybe I have a sleep problem,” I thought for the first time. A month later, I visited a primary care doctor, announcing, “I'm tired all the time and have trouble studying and driving, even short distances.” The doctor responded, “Everyone gets tired driving. Even I have to pull over to get a coffee sometimes.” The smallest voice inside me said, “I don't think she understands what I'm talking about.” Next, I brought up my knees buckling with laughter. I suggested perhaps it was neurological. The doctor said she'd never heard of anything like this. “I'll let you go to a neurologist but it's probably something you'll have to get used to.” I'd asked family members and friends, and another primary care doctor a year earlier, but to no avail. I was more lost than ever. The following week, I randomly mentioned my knee-buckling laughter to my sports therapist who thought she'd heard of something like that. She wrote “cataplexy?” on a piece of paper and handed it to me. Once home, I Googled “cataplexy” and knew within seconds that this was it. Cataplexy was associated with narcolepsy; a word I'd heard but thought was a joke. The dots began connecting. For individuals with sleep disorders, finding the right diagnosis is life changing. In my recent memoir,1Flygare J. Wide Awake and Dreaming: A Memoir of Narcolepsy. Mill Pond Swan Publishing, Venice, FL2013Google Scholar I describe this moment: “It was as if someone was holding a mirror up to show me the last few years of my life for the first time. My understanding of who I was and how I was living was changing rapidly … I shook in the silence of this lonely self-discovery.” I subsequently visited a sleep specialist who ordered the 24-hour sleep study, and I was diagnosed with a classic case of “narcolepsy with cataplexy.” In the 6 years since diagnosis, treatments, naps, and lifestyle adjustments have helped me to live successfully with narcolepsy. Diagnosed within 5 years of symptom onset, I am considered “one of the lucky ones.”