One woman shares about the narcolepsy symptoms that disrupted her life, and the journey to a diagnosis: "I'm living proof you can live a full life."
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“Here’s How I Knew I Had Narcolepsy”: A Patient’s Story Getting Answers, Following Extreme Fatigue
Published on Mar. 12, 2025
Narcolepsy is a chronic neurological sleep disorder that disrupts the brain’s ability to regulate sleep-wake cycles, leading to sudden sleep attacks, fragmented nighttime sleep, and overwhelming daytime fatigue. According to data shared by the National Organization for Rare Disorders, a nonprofit dedicated to supporting individuals with rare conditions, narcolepsy affects an estimated 1 in 2,000 people in the United States. Yet, despite its significant impact on daily life, it remains widely underdiagnosed.
There are two primary types of narcolepsy. Narcolepsy type 1 (NT1) is defined by cataplexy, a sudden loss of muscle tone triggered by strong emotions, alongside excessive daytime sleepiness (EDS), sleep paralysis, hallucinations, and sleep disruption. “Narcolepsy type 1 is characterized by a loss of orexin, or hypocretin, which is a neuropeptide in the brain that is important to maintain wakefulness and then be able to stay asleep,” says Nancy Foldvary-Shaefer, DO, MS, professor of neurology at the Cleveland Clinic Lerner College of Medicine and a specialist in sleep medicine. In NT1, neurons that release hypocretin are believed to be damaged, leading to dysregulated REM sleep and uncontrollable sleepiness.
Narcolepsy type 2 (NT2), on the other hand, does not involve cataplexy. “Narcolepsy type 2 is very similar in some ways to NT1, but we do not understand the neurobiology of it,” Dr. Foldvary-Shaefer adds in the Cleveland Clinic’s Health Essentials blog. Unlike NT1, NT2 patients appear to have normal hypocretin levels, making diagnosis even more challenging.
Because narcolepsy symptoms can overlap with other conditions like depression, sleep apnea, or general exhaustion, many people go years without an accurate diagnosis. Without a clear biomarker like low hypocretin, NT2 is often misdiagnosed, delaying proper treatment.
To provide insight on what it’s like to live with narcolepsy type 2, we spoke with Daphne Harris, a 35-year-old marketing professional from St. Petersburg, FL, who spent years battling unexplained exhaustion before finally receiving a diagnosis. Below, Harris shares her journey—from struggling to stay awake at work to the long-overdue sleep doctor referral that ultimately led to answers, and treatment.
How I Knew I Was Narcoleptic
By Daphne Harris, as told to Dr. Patricia Varacallo, DO
I’m a 35-year-old marketing professional, and for most of my early twenties I brushed off my narcolepsy symptoms as just part of working hard. In college I was the “night owl” who struggled with morning classes.
Later, in the working world, I found myself dozing in meetings after lunch and needing caffeine just to keep my eyes open through the afternoon. Friends joked I was “narcoleptic” because I always wanted to sleep. I often slept ten hours a night and still felt exhausted.
Worse, I began having strange experiences that, at the time, I didn’t realize were related. Occasionally when I was falling asleep, I’d hear what sounded like a loud clap or my named being called, startling me awake—but no one else heard it. A few times, I woke up in the morning completely unable to move my body for a brief moment (this, I later learned, was classic sleep paralysis). These incidents were scary, but they were fleeting, and I didn’t connect them to my daytime sleepiness.
Narcolepsy symptoms and misdiagnoses
By age 30, my daytime drowsiness was ruining my life. I’d nod off at my desk and make careless mistakes at work. My relationships were affected too: My now ex-boyfriend thought I was just not trying hard enough to stay active, because I’d often cancel evening plans in favor of sleep.
Feeling desperate, I finally went to my primary care doctor. She checked my bloodwork for thyroid issues and anemia, and everything came back normal. Next I was tested for sleep apnea (overnight oximeter and eventually a home sleep test) to see if breathing issues were disrupting my sleep. Those tests were also normal.
Her next thought was depression. Truthfully, I was feeling down, but mostly because I was so exhausted. Still, I tried the antidepressant she prescribed. After three months, my mood was a bit better but the crushing sleepiness hadn’t budged. I was discouraged. One doctor suggested it might be chronic fatigue syndrome, for which there is no clear treatment. I even struggled with the thought that I was just lazy and convinced myself I needed to work harder.
What kept me going was that deep down, I knew something was physically wrong. No healthy 30-year-old should be this tired.
I kept researching my symptoms online. “Narcolepsy” came up again and again, but I dismissed it initially because I was under the impression that I should be experiencing symptoms of cataplexy (I wasn’t suddenly dropping my coffee mug or buckling at the knees in exhaustion). Eventually, I learned there was a form without cataplexy—called “narcolepsy type 2″—and it was like a lightbulb went off.
During this time, I relocated from Ohio to Florida’s Gulf Coast and found a new doctor. When I mentioned narcolepsy, I was relieved that he took my concerns seriously and referred me to a board-certified sleep specialist.
Finally, narcolepsy testing and a diagnosis
My doctor recommended I should keep a sleep diary for two weeks and fill out an Epworth Sleepiness Scale questionnaire, which quantifies how likely you are to doze off in various scenarios. (Unsurprisingly, my Epworth score was off the charts, indicating severe daytime sleepiness.) We then scheduled an overnight sleep study (polysomnography) followed by a Multiple Sleep Latency Test (MSLT) at the clinic.
During the overnight polysomnogram, they glued electrodes to my scalp and face to monitor brain waves, eye movement, muscle tone, heart rate, and breathing while I slept. This was to rule out other sleep disorders and see if I entered REM sleep unusually fast.
The next day came the MSLT: I had to attempt to nap every two hours throughout the day, five times. They measured how quickly I fell asleep and if I went into REM (dreaming stage) during those short naps. The typical criteria for narcolepsy is falling asleep in under eight minutes on average, and entering REM in at least two of those naps. It was oddly validating to be told I did fall asleep in just a few minutes in all the nap trials—it wasn’t “all in my head” after all!
I also slipped into REM sleep in two naps. Combined with my history of symptoms, this confirmed the diagnosis. And since I had no cataplexy and, by all indications, normal hypocretin levels, it was narcolepsy type 2.
Getting the diagnosis was both a huge relief and somewhat daunting. On one hand, I finally had a name for my condition—and it was a legitimate medical condition. On the other hand, learning that narcolepsy is incurable was hard. I remember asking my doctor, “Okay, so how do we fix this?” and he explained that while we can’t cure narcolepsy, we can manage it effectively with treatment.
He also noted that narcolepsy often stabilizes over time and doesn’t necessarily get worse, and that some people even see some symptom improvement as they get older. That gave me hope.
Finding the right narcolepsy treatment
We started with lifestyle adjustments and medication. On the lifestyle front, my doctor emphasized sleep hygiene and scheduling. I established a strict sleep schedule, going to bed and waking up at the same times each day, even on weekends. I made my bedroom as sleep-friendly as possible (dark, cool, and quiet, with no TV or phone usage right before bed). We also incorporated short, scheduled naps into my day—a 15- to 20-minute nap during lunch, and another brief rest after work. Thankfully, since I work from home, this routine has been especially helpful.
In terms of medication, we discussed several options. The first-line treatment for narcolepsy’s daytime sleepiness often includes stimulant or wake-promoting medications. I was initially prescribed modafinil, a wakefulness-promoting drug, to be taken each morning. We later added a low dose of methylphenidate (Ritalin) in the afternoon when I found I was still having a mid-day slump. We also talked about avoiding things that could exacerbate my sleepiness: for example, I limit alcohol, which is a sedative, because even one drink in the evening can make me dangerously drowsy. Focusing on regular exercise and a balanced diet have helped boost my energy levels, too.
Life after my narcolepsy diagnosis
The difference after treatment was night and day. Within a week of starting modafinil and naps, I stopped having inadvertent sleep attacks during the day. It’s not a cure—I still have narcolepsy and always will.
I have to be mindful about my condition every day. For example, I plan my driving. I won’t drive long distances alone without taking a preventive nap, and I’ve learned to pull over for a short rest if I ever feel drowsy.
I also realized I’m not alone. There are many people out there just like me who struggled for years without a name for their condition, and felt immense relief when they finally understood it. Now, with proper treatment, I’ve reclaimed much of my life. Of course, I still have to listen to my body—when I’m tired, I must rest, and stress can make my symptoms worse. But overall, I’d say I’m living proof that you can live a full life with narcolepsy once you get the help you need.
What to do if you suspect you have narcolepsy
If you find yourself struggling with excessive daytime sleepiness despite getting enough rest, or if you experience unusual sleep disturbances like sleep paralysis, vivid hallucinations, or sudden episodes of muscle weakness, it’s important to consider whether narcolepsy could be the cause.
- Track your symptoms: Keep a sleep journal noting sleep duration, daytime drowsiness, sudden sleep episodes, and unusual symptoms like sleep paralysis or hallucinations.
- See a sleep specialist: Discuss your symptoms with your PCP, who can rule out other conditions like sleep apnea or iron deficiency. If narcolepsy is suspected, a sleep medicine specialist or neurologist should evaluate you.
- Get tested: A sleep specialist may order tests to measure how quickly you fall asleep and enter REM sleep.
- Prioritize safety: Avoid driving if you experience sudden sleep attacks, and schedule strategic naps to manage daytime drowsiness.
- Explore treatment options: While incurable, wake-promoting medications, lifestyle adjustments, and sleep hygiene can improve narcolepsy symptoms.
About the expert
Nancy Foldvary-Shaefer, DO, MS, is a board-certified neurologist specializing in clinical neurophysiology, sleep medicine, and epilepsy. She joined the Cleveland Clinic in 1995 and currently serves as a professor of neurology at the Cleveland Clinic Lerner College of Medicine. In addition to earning a master of science in clinical research from Case Western Reserve University, she has authored several books on sleep disorders.
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