Narcolepsy
type 2

The main symptom of Narcolepsy Type 2 is EDS that lasts for at least 3 months. Sleep patterns may also change, and if you have Narcolepsy Type 2, you may need 1 or more naps a day. 

Common symptoms include:

• EDS — Excessive daytime sleepiness
• Brain fog — Feeling mentally sluggish or fuzzy, confused, forgetful, or unable to focus
• Needed naps —
  • Usually short and somewhat refreshing (restorative)
  • May be hard or impossible to avoid
• Disrupted nighttime sleep —
  • When you wake up many times in a night
  • You may not notice when this happens, but it can make your sleep less restful and you may wake up feeling tired and unrefreshed
  • Your sleep studies may show arousals (wake-ups) from sleep or a high number of shifts (changes) between different stages of sleep
• Sleep-related hallucinations (or waking dreams) — seeing, hearing, feeling, or smelling something that is not actually there while you are falling asleep or waking up
• Sleep paralysis — inability to move or speak, which happens while falling asleep or waking up and lasts for a few seconds to minutes 
• Sleep attacks — Episodes when you fall asleep in places or at times you don’t want to
• Fatigue —
  • A lack of physical or mental energy
  • Feeling tired or exhausted
• Severe sleep inertia (or sleep drunkenness), which may last for a few hours —
  • Struggling to wake up fully, often with an overwhelming desire to go back to sleep
  • Feeling disoriented, confused, or irritable
  • Having poor coordination
  • Doing tasks without realizing it
• Long sleep — Needing at least 11 hours of sleep per 24-hour period (including naps) or more than 9 hours at night (or whenever you sleep the longest)

You don’t need to have all of these symptoms to be diagnosed with Narcolepsy Type 2, but you’ll have at least some of them.

To learn more about coping with sleep-related hallucinations and paralysis, visit Project Sleep’s web page.

At what age do Narcolepsy Type 2 symptoms usually start?

Symptoms most often start in a person’s mid-to-late teens. However, they can start at any age. They may start suddenly or develop over time.

Symptoms may:

• Happen every day, or a few days a week
• Get worse or better over hours, weeks, months, or years

If you have Narcolepsy Type 2, you may have times when you can function (do daily activities such as work or school) well or well enough, and other times when you don’t function well at all. Even if you function well at times, your symptoms should be taken seriously.

Researchers estimate that narcolepsy in general (including both Narcolepsy Type 1 and Narcolepsy Type 2 happens in 1 in 2,000 people. It’s harder to know how many people have Narcolepsy Type 2. Researchers have estimated 1 in every 5,000 people to 1 in every 3,000 people have it. Recent U.S. insurance claims data suggest it happens in 1 in every 1,500 people. However, estimates in Europe have been far lower.

Narcolepsy Type 2 can greatly affect daily life:

• The amount and timing of needed sleep can limit daily activities.
• Sleep-related hallucinations and paralysis can be very distressing.
• Narcolepsy Type 2 can cause problems with thinking, working, and socializing. People with Narcolepsy Type 2 may have trouble doing their jobs, staying in school, having romantic relationships, and fully engaging with their friends and loved ones.

These effects are especially true for people who aren’t taking medicines that work well. But even with medicines, people who have Narcolepsy Type 2 may struggle with these activities.

Doctors will usually:

1. Ask about your symptoms and medical history, sometimes using questionnaires
2. Confirm from your history that you’ve had daily EDS for at least 3 months
3. Do a complete physical exam and medical tests, including sleep studies, to make sure your EDS isn’t caused by something else

Common causes of EDS other than Narcolepsy Type 2 include: 

• Prescribed medicines causing sleepiness as a side effect
• Insufficient sleep, when you regularly don’t get enough good-quality sleep because of work or social reasons
  • Your doctor may test you, preferably using a sleep diary along with a wearable sensor called an actigraph
• Problems with sleep rhythms (circadian rhythm sleep-wake disorders), such as delayed sleep phase syndrome
• Another sleep disorder, such as sleep apnea or narcolepsy type 2
• Chronic fatigue syndrome (CFS) or fibromyalgia
• Attention-deficit/hyperactivity disorder

Testing for hypersomnia sleep disorders almost always includes a 2-part sleep study:

1. An overnight sleep study measures several features of sleep and helps rule out other sleep problems such as sleep apnea.
2. A daytime nap study called a Multiple Sleep Latency Test (MSLT) measures how long it takes you to fall asleep during 4 or 5 nap opportunities (chances to nap). The MSLT also shows if you have REM sleep within 15 minutes of falling asleep during a nap. Doctors will usually diagnose you with Narcolepsy Type 2 if you have all of these features:
   • No cataplexy
   • Falling asleep in 8 minutes or less (on average across all your nap opportunities)
   • Two or more episodes of REM sleep within 15 minutes of falling asleep (including your overnight sleep study)

How can doctors tell the difference between Narcolepsy Type 1 and Narcolepsy Type 2?

The MSLT results doctors use to diagnose Narcolepsy Type 1 and Narcolepsy Type 2 are the same, so the results don’t help show which sleep disorder you have. Your symptoms, especially cataplexy, can help doctors tell the difference. If your diagnosis still isn’t clear, you may need to follow these steps to tell the difference between Narcolepsy Type 1 and Narcolepsy Type 2:

• Have a blood test for HLA-DQB1*06:02. If this blood test is negative, you most likely have Narcolepsy Type 2. If this test is positive, you may need step 2.
• Have a spinal tap to check orexin levels in your cerebrospinal fluid (CSF). If your orexin levels are low, you have Narcolepsy Type 1. If your orexin levels are normal, you most likely have Narcolepsy Type 2.

If you’re a person of African descent, you may be more likely to have narcolepsy without cataplexy and with low orexin levels. This is the form of NT1 needing these extra tests for correct diagnosis. 

When should my doctor repeat my sleep studies?

• Only repeat sleep studies if absolutely necessary — for example, if your symptoms have changed a lot and your doctor thinks your diagnosis has also changed.
• If your insurer asks for repeat sleep studies, ask your doctor if the test is needed (“medically indicated”). Your doctor can also recommend different testing, which may include actigraphy and a more detailed sleep diary.

Visit our web pages:

• Medicines for idiopathic hypersomnia and narcolepsy
• Quality of life tips