Episodes of cataplexy can be very different in how long they last and how intense they are. They may include:
Jaw briefly becoming loose or limp
Eyelids and head drooping (this may look like sleep to others)
Falling down and being unable to move for several minutes
You won’t lose consciousness, but it may look to others like you passed out or fainted. These episodes are often triggered by strong emotions such as laughter. If you think you may have cataplexy, take notes about your episodes (and video if possible) to discuss with your doctor.
Watch this short BBC video “What is it like to have a cataplexy attack”:
At what age do NT1 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.
Happen every day, or a few days a week
Get worse or better over hours, weeks, months, or years
If you have NT1, 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.
How do NT1 symptoms compare to IH and NT2 symptoms?
Researchers estimate that narcolepsy in general (including both NT1 and NT2) happens in 1 in 2,000 people. It’s harder to know how many people have NT1, but researchers estimate 1 in every 5,000 people to 1 in every 3,333 people have it.
What’s it like to have NT1?
NT1 can greatly affect daily life:
The amount and timing of needed sleep can limit daily activities.
Cataplexy can be very distressing and also lead to falls.
Sleep-related hallucinations and paralysis can be very distressing.
NT1 can cause problems with thinking, working, and socializing. People with NT1 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 NT1 may struggle with these activities.
Stories from people living with NT1
While almost everyone with NT1 has EDS and cataplexy, not everyone has the other symptoms, and they can affect each person differently. Watch these videos to learn more:
Testing for hypersomnia sleep disorders almost always includes a 2-part sleep study:
An overnight sleep study measures several features of sleep and helps rule out other sleep problems such as sleep apnea. If you have cataplexy and REM sleep within 15 minutes of falling asleep, doctors can diagnose you with NT1 without doing the 2nd part of the sleep study.
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 is another chance to see if you have REM sleep within 15 minutes of falling asleep. Doctors will usually diagnose you with NT1 if you have all of these features:
Falling asleep in 8 minutes or less (on average across all nap opportunities)
Two or more episodes of REM sleep within 15 minutes of falling asleep (including your overnight sleep study)
You may need to prepare during the weeks leading up to your sleep studies, and your doctor may recommend that you change or stop taking specific medicines. Ask for time off from school or work if your symptoms are likely to keep you from being able to function well while you prepare. This may happen if you need to:
Get much more sleep than you usually do
Change from a shift work schedule to a normal schedule
Stop medicines that are helping your symptoms
You may need to slowly taper off some medicines, such as antidepressants, and it may take longer for you to stop them before your sleep study and then get back up to a dose that works well for you after your sleep study
The MSLT results doctors use to diagnose NT1 and NT2 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 you don’t clearly have cataplexy, you may need to follow these steps to tell the difference between NT1 and NT2:
Have a blood test for HLA-DQB1*06:02. If this blood test is negative, you most likely have NT2. If this test is positive, you may need step 2.