The Process of Diagnosing Your Narcolepsy

Diagnosing your narcolepsy is an involved process that has many steps. Some of these steps are informal. Others require special tests and studies. Your healthcare provider takes these steps to get you the right diagnosis.

Case History

You may not know this, but a detailed case history is the first step to diagnosing your narcolepsy. All healthcare providers obtain a case history, especially during your initial visit. In a sense, they introduce you to your provider. Often, this process resembles an informal interview. Your provider asks questions, you answer them, and your responses get documented in your chart. You answer questions about your background, lifestyle, general health, and your medical condition. You may even answer questions about symptoms, their onset, and how your symptoms affect your life.

Why We Need Case Histories

True, case histories detail your health and medical history. They give your provider information on the reason for your visit, like your current signs and symptoms, their onset, and how these symptoms affect your life. They also give information on your past medical history, like specialists you’ve seen and treatments you’ve tried. But they do much more than that. They help your healthcare provider make informed decisions about your condition and support decisions about a possible diagnosis. This is all the more reason that you respond to the questions truthfully, as embarrassing or uncomfortable as some of the questions may be. 

A case history alone isn’t enough to diagnose you with narcolepsy. However, they are the first step in the right direction!

Sleep Studies

Another piece of your diagnostic puzzle is a sleep study. Healthcare providers need to study your sleep patterns, habits, and behaviors to diagnose you with narcolepsy. Sleep studies don’t happen during a routine visit. Instead, you see a specialist. These are some of the things you may experience.


Polysomnography (“sleep study”) is a standard procedure for diagnosing narcolepsy. This procedure happens overnight in a sleep center. Technicians look at different things, like breathing, heart rate, and sleep times while you sleep. But that’s not all that happens. The technician also looks at your brain activity and for different behaviors like talking and movements.

Polysomnography gives your provider an idea about your nighttime sleep habits and behaviors. But, it doesn’t tell much about your daytime sleep behaviors. Your healthcare provider will recommend you for another study to get a better picture. 

Multiple Sleep Latency Test

Multiple sleep latency tests provide information that polysomnography doesn’t; it gives information about your daytime sleepiness. You must do this test after your polysomnography.

With this test, you take 4-5 scheduled 20-minute naps that are spaced two hours apart. Like polysomnography, this test measures your brain while you sleep. But that’s not all. It also looks at your muscle activity and your eye movements while you sleep. 

Together, these sleep studies tell about how you’re sleeping. Therefore, they’re a crucial piece for diagnosing your narcolepsy. You want a timely and accurate diagnosis. Stop using stimulants and sedatives before this study to make sure that your results are accurate.

Scales and Questionnaires

Healthcare providers call these subjective assessments. That’s because we don’t compare to any standard. Instead, they focus on your input, your feelings, and your emotions.  They are another crucial piece to your getting an accurate diagnosis. These two scales/questionnaires give your healthcare provider insight into your daytime sleepiness.

Epworth Sleepiness Scale

You complete this short questionnaire by answering questions about your likelihood of falling asleep in different situations. You score each scenario from 0-3. And at the end, you total your scores. Higher scores mean more daytime sleepiness.

This scale offers insight into your excessive daytime sleepiness. But it isn’t enough to diagnose you with narcolepsy. Part of the reason is that this scale considers all sleep disorders, not just narcolepsy. Another reason is that it only subjectively measures one symptom of narcolepsy. The best practice is to use information from this scale with findings from your sleep study.

Stanford Sleepiness Scale

You may not have heard of this scale. Or even had the opportunity to complete it. Healthcare providers rarely use it to diagnose your narcolepsy. However, you should, at the very least, know what it is and its use.

You would complete this scale by answering questions about your levels of alertness and sleepiness at specific times. The second part asks you to indicate your level of drowsiness or sleepiness at certain times.

The only limitation to this scale is its specificity. You have to tell specific times that you feel sleepy. You also rate those symptoms at certain times. We can agree that this scale offers relevant information, which could help with diagnosing narcolepsy. But it’s just not practical to complete.

Rule Out Other Conditions

Remember all of the conditions that look like narcolepsy and can delay your diagnosis? Your healthcare provider has to rule out those conditions to diagnose you with narcolepsy. It’s almost like the process of elimination. They have to rule out what it isn’t to figure out what it is.

The good news is that this step often happens alongside the others. For instance, the information you share on your case history can help rule out these conditions.