How is Narcolepsy diagnosed?
It can take as long as 10 to 15 years after the first symptoms appear before Narcolepsy is recognized and diagnosed. Many doctors are unfamiliar with Narcolepsy, even though it affects 1 in 2,000 people. Narcolepsy symptoms are like symptoms of other illnesses, such as infections, depression and other sleep disorders.
It can sometimes be mistaken for a learning problem, seizure and even laziness, especially in school-aged children and teens. When Narcolepsy symptoms are mild, the disorder is even harder to diagnose.
Signs and Symptoms
Tell your doctor about any potential signs and symptoms of Narcolepsy. This is important because your doctor may not ask about them during a routine checkup.
To help address the issue, you may want to keep a sleep diary for a few weeks. Keep a daily record of how easy it is to fall and stay asleep, how much sleep you get at night and how alert you feel during the day.
Narcolepsy Screening App- Click here for downloadable instructions for free narcolepsy screening app
Use the following links to rate your possibility of having Narcolepsy:
- The Epworth Sleepiness Scale
- AASM Sleep Evaluation
- Ullanlinna Narcolepsy Scale
- Swiss Narcolepsy Scale
- Sleep Log
The four major symptoms associated with Narcolepsy are:
- Excessive Daytime Sleepiness (EDS) – episodes of overwhelming sleepiness experienced throughout the day, comparable to how one would feel after staying awake for 48-72 hours straight.
- Cataplexy – about 60% of people with Narcolepsy also experience cataplexy, the sudden episode of muscle weakness triggered by strong emotion, resulting in the inability to move while awake. The weakness may be a buckling in the knees, the head dropping or jaw slackening. Often, emotions such as humor, elation, surprise or anger trigger the weakness. In severe cases, an individual might fall down and become completely paralyzed for a few seconds to several minutes. Reflexes are abolished during the attack.
- Hypnagogic/Hypnopompic Hallucinations – auditory, visual or tactile hallucinations, while falling asleep or waking up. These vivid dream-like experiences can be very frightening, life-like and can be confused as reality.
- Sleep Paralysis – the inability to move upon falling asleep or waking up. The paralysis may last a few seconds to a few minutes, during which time one is unable to move. A frightening symptom considered to be an abnormal episode of REM/dream sleep atonia.
Other symptoms may include:
- Restlessness – having trouble falling asleep and staying asleep.
- Automatic Behavior – when you’re not completely aware of your actions or become forgetful. Like going on auto-pilot.
- Hyperactivity – activities are sped up, seen especially with children who have Narcolepsy.
Medical & Family History
Common factors that may appear like Narcolepsy can include: infections, brain injuries, autoimmune disorders, thyroid disorders, drug and alcohol use or similar sleep disorders that are not Narcolepsy. However, if you do have known relatives with Narcolepsy, it is genetically more likely that you have the disorder. Please make you doctor aware of both your full medical history and related family medical commonalities.
If your doctor thinks you have Narcolepsy, he or she will likely suggest that you see a sleep specialist. This specialist may advise you to have sleep studies to find out more about your condition. Sleep studies are done at sleep centers. Doctors use the results from two tests to diagnose Narcolepsy. These tests are a polysomnogram (PSG) and a multiple sleep latency test (MSLT).
You usually stay overnight at a sleep center for a PSG. The test records brain activity, eye movements, heart rate, and blood pressure. A PSG can help find out whether you:
- Fall asleep quickly
- Go into rapid eye movement (REM) sleep soon after falling asleep
- Wake up often during the night
Multiple Sleep Latency Test
This daytime sleep study measures how sleepy you are. It’s often done the day after a PSG. During the test, you’re asked to nap for 20 minutes every 2 hours throughout the day (you will nap a total of four or five times). A technician checks your brain activity during this time. It shows:
- How quickly you fall asleep
- How long it takes you to reach various stages of sleep
- How quickly you fall asleep during the day (after a full night’s sleep)
- Whether you go into REM sleep soon after falling asleep
This test measures the level of hypocretin in the fluid that surrounds your spinal cord. Most people who have Narcolepsy have low levels of hypocretin. Hypocretin is a chemical that helps promote wakefulness (spinal taps are rarely used to diagnose Narcolepsy).
Frequently Asked Questions
I’ve never fallen asleep standing up, could I still have Narcolepsy?
Narcolepsy is often mischaracterized in comedic portrayals as causing individuals to fall asleep “without warning” while standing or speaking. This is not a typical experience of people with Narcolepsy.
I have some symptoms, but not all – could this still be Narcolepsy?
Not everyone with Narcolepsy experiences all of the symptoms. In addition, people experience the symptoms to different degrees and frequencies. It is important to speak with your doctor about all possible symptoms.
I’ve been hallucinating recently, could that be cause by Narcolepsy?
Hypnagogic and hypnopompic hallucinations and sleep paralysis are not unique to Narcolepsy. These symptoms may be experienced by people without Narcolepsy, generally during periods of high stress or sleep deprivation. However, people with Narcolepsy do experience these symptoms with greater frequency over longer periods of time.