What to Know About Getting a Narcolepsy Diagnosis

If you often have sudden episodes of extreme sleepiness, you could have narcolepsy. Working with a sleep specialist can help you get the right diagnosis.

It’s natural to feel tired at times. You might experience daytime drowsiness for any number of reasons, including a lack of sleep, a busy schedule, or health conditions.

But maybe you get enough sleep each night and still find yourself extremely drowsy during the day. These periods of sleepiness might feel like “attacks,” where you suddenly feel very sleepy all at once. If so, you may have the sleep disorder narcolepsy.

This neurological condition disrupts how your brain manages your sleep-wake cycles. Symptoms of narcolepsy include:

excessive daytime sleepiness

cataplexy, or sudden episodes of muscle limpness or weakness that often happen when you laugh, cry, or experience strong emotions

sleep paralysis

vivid hallucinations that happen as you fall asleep or wake up

Here’s what to know about getting a narcolepsy diagnosis.

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Diagnostic criteria

Excessive daytime sleepiness is the hallmark of narcolepsy, but diagnostic guidelines vary slightly depending on the process leading to your diagnosis.

In the U.S., the most current versions of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR) and the International Classification of Sleep Disorders (ICSD-3) set the guidelines for a narcolepsy diagnosis.

Mental health professionals and general practitioners will likely use the DSM-5-TR, while experts who focus on sleep medicine may use the ICSD. But the rate of diagnosis remains roughly the same.

DSM-5-TR criteria

If you started your journey with a therapist, psychiatrist, or primary care doctor, they’ll probably use the DSM-5-TR to assess your symptoms.

According to the DSM-5-TR, you may receive a narcolepsy diagnosis when:

you’ve experienced periods of unavoidable sleepiness, lapsing into sleep, or napping multiple times throughout the day, at least 3 times a week over the last 3 months

you’ve experienced at least one of the following:

cataplexy

hypocretin deficiency

irregular rapid eye movement (REM) periods or nighttime sleep latency, which is the time it takes you to fall asleep

If you have narcolepsy, your diagnosis will include a “specifier,” or subtype based on your specific symptoms and their severity.

Type 1 and type 2 are the most common forms of narcolepsy, though some diagnostic guidelines recognize as many as 5 subtypes.

ICSD-3 criteria

If your doctor refers you to a sleep specialist, they may use the ICSD-3 to diagnose your symptoms. This manual draws a clear line between narcolepsy type 1 and type 2.

According to the ICSD-3, you may have type 1 narcolepsy if you:

have experienced an irresistible need to sleep or daytime lapses into sleep for the last 3 months

have experienced at least one of the following:

cataplexy with irregular sleep latency and REM periods

low levels of hypocretin, a brain hormone linked to some types of narcolepsy

You may have type 2 narcolepsy if your symptoms don’t relate to other health conditions or substance use and if you:

have experienced an irresistible need to sleep or daytime lapses into sleep for the last 3 months,

experience irregular REM or sleep latency periods

have never experienced cataplexy

have typical levels of hypocretin

What makes it so challenging to get a diagnosis?

Anyone can develop narcolepsy. It affects people of all genders equally, though it’s fairly rare: an estimated 135,000 to 200,000 people in the U.S. have this condition.

The majority of people living with narcolepsy start noticing symptoms between the ages of 7 and 25. That said, many people go as long as 8 to 10 years before receiving a diagnosis, according to the American Academy of Sleep Medicine. What’s more, estimates suggest as many as 50% of people living with narcolepsy don’t have a diagnosis.

This may, in part, relate to the fact that narcolepsy’s symptoms aren’t always obvious. In fact, narcolepsy can resemble many other sleep, health, and mental health conditions, including:

hypersomnolence

sleep apnea

sleep deprivation

major depression

conversion disorder

seizures

schizophrenia

Cataplexy is the symptom most unique to narcolepsy, but not everyone with narcolepsy experiences these periods of muscle weakness — and the absence of this symptom may delay diagnosis.

Stereotypes can also complicate the process of getting a diagnosis. Many people associate narcolepsy with abrupt sleep. And certainly, narcolepsy may cause you to lapse into sleep against your will, but not everyone experiences this.

If you don’t fall asleep in random places, you might simply link your symptoms to other things in life that make you feel tired.

How to get started

Medical doctors and mental health professionals can help diagnose narcolepsy. You’ll typically want to start by working with one of these professionals since many sleep specialists require a referral before your consultation.

It can help to keep a sleep journal for at least a week or 2 before your appointment. A detailed history of your symptoms is an essential part of the diagnostic process, so your care team may ask you to start one as a first step.

After ruling out other potential causes of your symptoms, your care team will typically recommend the following:

hypocretin level measurement

polysomnogram (PSG) overnight sleep study

multiple sleep latency test (MSLT)

These tests can offer more insight into your sleep patterns and whether low levels of hypocretin may play a part in your symptoms.

They can also help your care team rule out other sleep disorders that involve similar sleep-wake disruption.

Treatments

There’s no cure for narcolepsy, but lifestyle changes and medication can help you manage your symptoms.

Common prescription medications include:

antidepressants

stimulant medications

sodium oxybate (Xyrem)

pitolisant (Wakix), a histamine 3 receptor antagonist

Regular sleep habits can also make a difference. Maintaining a regular bedtime, limiting sleep interruptions, and taking short naps can help.

Your care team may also suggest:

avoiding caffeine or alcohol before bed

avoiding smoking cigarettes

trying a relaxing bedtime routine

exercising regularly

avoiding large or heavy meals before bedtime

Future treatment possibilities

Experts are currently studying hypocretin therapy as a potential new approach to treating narcolepsy. This treatment would involve administering hypocretin directly into your body or implanting cells to increase your production of this hormone.

The bottom line

You may have narcolepsy if you experience excessive daytime sleepiness, sudden lapses into sleep, or brief episodes of muscle weakness.

This sleep-wake disorder is often difficult to diagnose, and many people live with the condition for years before it’s identified.

A doctor or mental health professional can help you take the first steps toward the right diagnosis and treatment. Narcolepsy can’t be cured, but treatment can make a difference.

Posted : 2024-09-30 09:08

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