How Doctors Diagnose Narcolepsy Everyday Health MenuNewslettersSearch Narcolepsy How Doctors Diagnose Narcolepsy — and Why the Disorder Can Be So Difficult to Identify By Katherine LeeMedically Reviewed by Jason Paul Chua, MD, PhDReviewed: November 3, 2021Medically ReviewedExcessive daytime sleepiness is a symptom you shouldn't ignore, though doctors say it often is.Getty ImagesNarcolepsy is a chronic neurological disorder in which rapid eye movement (REM) sleep — the phase of sleep in which dreams occur — happens at the wrong time, according to the National Heart, Lung, and Blood Institute.Feeling extremely fatigued and constantly falling asleep (sometimes uncontrollably) during the day are symptoms you may experience with this sleep disorder, per the National Institute of Neurological Disorders and Stroke. Narcolepsy can have very debilitating side effects, but the important point to know is that there are medications and other lifestyle modifications that individuals can follow to help manage the condition and lead full lives, notes Stanford Medicine Center for Narcolepsy. For any of those treatments to help, however, the first step is getting an accurate diagnosis. And while certain narcolepsy symptoms — such as sudden sleep “attacks” and cataplexy (sudden loss of muscle tone and control) — are fairly unique, other symptoms and the ones that tend to show up earlier on are ones that could be missed or overlooked as another problem, according to the National Sleep Foundation. Narcolepsy Is Often Misdiagnosed or Missed Altogether — Here s What to Look ForThe fact that the primary symptom of narcolepsy is excessive daytime sleepiness is one major reason why many people who have narcolepsy may not realize that they have a problem or get a proper diagnosis for years. Excessive sleepiness during the day can also be caused by a number of physical or psychological conditions, such as obesity or depression, according to the American Academy of Sleep Medicine. “Narcolepsy is often misdiagnosed as not getting enough sleep,” says Eric Olson, MD, associate professor of medicine, sleep medicine specialist at the Mayo Clinic, and board member of the American Academy of Sleep Medicine (AASM).Other Common Sleep Disorders The Types of Insomnia ExplainedIn many cases, people who are sleepy don’t seek help, sometimes for years, because they assume being sleepy isn’t a sign that they may have a disease. “Those with mild symptoms don’t go to the doctor,” says Emmanuel Mignot, MD, a professor of psychiatry and behavioral sciences at Stanford University in California and the director of the Stanford Center for Sleep Sciences and Medicine. And when they do see a doctor for a checkup or an illness, they may not even mention their chronic daytime sleepiness. “Patients might not bring it up with their doctor,” says Dr. Olson. But daytime sleepiness is a problem you should talk to your doctor about, Olson says, along with any other symptoms that could be a narcolepsy red flag, including:Cataplexy — a sudden loss of muscle tone and control typically triggered by strong emotions like joy, surprise, excitement, terror, or angerHallucinationsSleep paralysis, which can sometimes occur at the same time as hallucinations RELATED: The Symptoms and Early Signs of Narcolepsy — and How to Spot Them Editor' s Picks Who Should Be on Your Narcolepsy Healthcare Team While there is no cure for narcolepsy, these healthcare professionals can help you treat and manage this sleep disorder and improve daily function.…Learn More Questions to Expect From Your Doctor if You Suspect You Have NarcolepsyIf you are experiencing symptoms that might be narcolepsy, the first step is telling your primary care doctor. He or she will likely ask any or all of the following questions to understand more about what you are experiencing and whether or not you should see a sleep medicine specialist:What does your typical sleep schedule look like?Do you have trouble falling asleep or staying asleep?Do you feel fatigued or experience sleepiness during the day?Have you experienced other narcolepsy symptoms, such as cataplexy, hallucinations, or sleep paralysis?What medication are you taking? Some medications, such as pain relievers containing caffeine, antidepressants, or antihistamines, can disrupt your sleep and cause daytime drowsiness.Do you use drugs or alcohol? How much? How often?Have you recently suffered an infection (such as the flu) or brain injury? Do you have an autoimmune disorder? These are factors that could potentially lead to narcolepsy.Do you have any relatives who have narcolepsy, or who had symptoms that could have possibly been narcolepsy but were never diagnosed? (While narcolepsy isn’t hereditary, the genetic disposition to develop the sleep disorder may be inherited, says Dr. Mignot.) It’s important to know that your doctor may not ask about daytime fatigue or your sleep during a regular checkup, but it’s not normal to not be getting restful, restorative sleep on a regular basis. You should bring up sleep complaints with your doctor. RELATED: Sleep 101: Everything You Need to Know About Healthy Sleep To help determine if your sleep complaints might be narcolepsy, your doctor may ask you to keep a sleep diary for a few weeks that tracks how many hours you sleep each night, when you sleep, how quickly you fall asleep at night, whether you experience sleepiness during the day, and whether (and how much) you nap during the day. In most cases, primary care doctors will recommend you see a sleep medicine specialist to further discuss your symptoms and make a narcolepsy diagnosis. But some primary care doctors do have sleep medicine expertise and may be able to make a diagnosis themselves. RELATED: Lifestyle Tips That Can Help You Manage Narcolepsy Systems Sleep Tests That Help Doctors Confirm a Narcolepsy Diagnosis In addition to a medical exam and family history, doctors rely on two sleep tests that are performed at a sleep center to look for the cause of the symptoms and determine whether you have narcolepsy or another sleep disorder, explains Shelley Hershner, MD, an assistant professor of neurology and the director of the Collegiate Sleep Clinic at the University of Michigan in Ann Arbor, who has worked on the narcolepsy quality metrics for the AASM. Polysomnogram For a polysomnogram the patient stays overnight at the sleep center while technicians record data about their brain activity, heart rate, blood pressure, and eye movements. The test can help determine whether your sleep cycle is normal — going into NREM and then progressing into REM after an hour or more — or if it indicates narcolepsy (you fall asleep quickly and go right into REM sleep, and then have trouble staying asleep throughout the night). Multiple Sleep Latency Test (MSLT) This full-day test is done on the day after the polysomnogram, and it’s designed to measure how sleepy you are during daytime. It determines how quickly you fall asleep during the day after a full night’s sleep (the previous night in the lab), and it also measures how quickly a person falls asleep and enters REM sleep during a daytime nap.The test takes place over the course of a day. You will be asked to take five scheduled naps with two-hour breaks in between. During each of the scheduled naps you lie in a dark, quiet, and comfortable room and try to sleep. Then, technicians will measure how long it takes you to fall asleep. If you fall asleep, they wake you up after 15 minutes; if you do not fall asleep after 20 minutes, the technician will stop that nap session, per the American Academy of Sleep Medicine. Before the test, your doctor will likely order blood and urine tests to screen for substances that can cause false positives.In rare cases your doctor might additionally order a test to measure the levels of the brain hormone hypocretin-1 in the fluid that surrounds the brain and spinal chord, known as a spinal tap or lumbar puncture, according to the National Institute of Neurological Disorders and Stroke. Unless you have another serious medical condition that affects hypocretin levels, low levels are nearly always an indicator of type 1 narcolepsy. Though narcolepsy cannot be diagnosed by this test alone. RELATED: Common Myths and Misunderstandings About Narcolepsy The Link Between Concussions and Sleep Problems Traumatic brain injuries (including concussions) can cause serious chronic sleep problems. Here’s what you need to know about how to get the right diagnosis.Article Narcolepsy Can Be a Tricky Diagnosis to MakeWhile there have been vast improvements in understanding and diagnosing narcolepsy, there are still challenges that can delay diagnosis — including the fact that the symptoms of narcolepsy often overlap with other disorders, including depression, anxiety disorders, and other psychiatric illnesses.In some cases individuals with the symptoms may delay seeking help because they don’t understand the symptoms they’re experiencing — hallucinations or cataplexy, for instance — or may not be sure what to tell their doctor. Narcolepsy symptoms can also be mistaken for those of a seizure disorder or another sleep disorder when someone experiences a cataplexy attack or chronically falls asleep during the day. And in some cases, narcolepsy symptoms are neglected because of a wrongful assumption that an individual is just “lazy.” If left undiagnosed or untreated, narcolepsy can interfere with one’s psychological, social, and cognitive function. It can also have a negative impact on school performance in children, on work, and on social relationships and activities. Unfortunately it can also lead to psychological problems, including depression, Olson notes. “Some people wonder, ‘Why am I different?’ and feel like they’re failing in school, can’t keep a job, and are failing in life.” Someone with narcolepsy may avoid some of the joys in life that can trigger symptoms, such as laughing, activities that cause excitement, or even sex if they’re prone to falling asleep during intercourse, Olson says. “It can be life-restricting.” For all these reasons, don't ignore symptoms, and get an accurate diagnosis. NEWSLETTERS Sign up for our Healthy Living Newsletter SubscribeBy subscribing you agree to the Terms of Use and Privacy Policy. Editorial Sources and Fact-Checking Narcolepsy. National Heart, Lung, and Blood Institute.Narcolepsy Fact Sheet. National Institute of Neurological Disorders and Stroke. July 6, 2018.About Narcolepsy. Stanford Medicine Center for Narcolepsy. 2018.Excessive Sleepiness: Causes. National Sleep Foundation. 2018.Obesity, Depression Found to Be Root Causes of Daytime Sleepiness. American Academy of Sleep Medicine. June 13, 2012.Multiple Sleep Latency Test (MSLT): Overview and Facts. Sleep Education. 2018.Drowsiness. MedlinePlus. July 9, 2018.Narcolepsy Information Page. National Institute of Neurological Disorders and Stroke. June 13, 2018.Morse AM, Sanjeev K. Narcolepsy and Psychiatric Disorders: Comorbidities or Shared Pathophysiology? Medical Sciences. March 2018.Narcolepsy Fact Sheet. National Institute of Neurological Disorders and Stroke. September 30, 2020.Show Less The Latest in Narcolepsy Health Problems Linked to Untreated NarcolepsyUntreated or undertreated narcolepsy can increase your risk of developing conditions such as high blood pressure, obesity, depression, and more. 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