There are two main types of narcolepsy. One involves cataplexy — sudden, extreme muscle weakness — and one doesn’t.
Narcolepsy is a chronic neurological sleep disorder. It’s characterized by sudden attacks of excessive daytime sleepiness (EDS).
But while everyone feels daytime sleepiness from time to time, narcolepsy is more than that. This is a rare condition that affects the brain’s ability to control your sleep-wake cycle.
Estimates suggest that narcolepsy affects 1 in every 2,000 individuals. While small, this still accounts for millions of people worldwide.
Along with daytime sleepiness, sudden extreme muscle weakness (cataplexy), hallucinations, and brief episodes of paralysis are also common symptoms of narcolepsy.
Due to the nature and presentation of its symptoms, narcolepsy often goes misdiagnosed or untreated.
There are two main types of narcolepsy, distinguished by symptoms and the presence of muscle weakness.
Narcolepsy with cataplexy is known as narcolepsy type 1.
Narcolepsy type 1 occurs when nearly all neurons containing hypocretin are lost. Hypocretin, also known as orexin, is a chemical that helps regulate wakefulness and sleep.
Researchers don’t fully understand why this is, but believe that some sort of autoimmune condition could be the cause.
Narcolepsy usually occurs sporadically. However, genetic factors may play an important role.
Although this gene explanation is widely accepted, it’s still not fully proven and more research is needed.
The main symptom of narcolepsy is EDS, regardless if it’s type 1 or 2.
Attacks of excessive daytime sleepiness can last a few seconds to several minutes and vary in frequency. You may have several attacks during a single day.
In addition, 10–25% of individuals with type 1 narcolepsy have these other symptoms:
- Cataplexy. Cataplexy is when you experience sudden muscle weakness. It may last a few seconds or several minutes while you’re awake. There’s no loss of consciousness during an episode of cataplexy.
- Sleep paralysis. When you experience sleep paralysis, you’re temporarily unable to move or speak while falling asleep or waking up.
- Hallucinations. Vivid visual hallucinations usually occur at the beginning or end of the sleep cycle. When they happen upon waking, they’re called hypnopompic hallucinations. When they happen while falling asleep, they’re called hypnagogic hallucinations.
You may also have co-occurring sleep disorders, such as insomnia, obstructive sleep apnea, and periodic leg movements.
Anyone with narcolepsy may also experience:
- difficulty concentrating
- memory problems
According to a 2019 study, 14 per 100,000 people are diagnosed with type 1 narcolepsy. But this doesn’t account for everyone who might have narcolepsy but are either misdiagnosed or undiagnosed.
Most people start having symptoms in their late teens or early 20s. Some people can start having symptoms in early childhood, though it’s commonly misdiagnosed as ADHD or behavioral problems.
Type 2 narcolepsy was previously called narcolepsy without cataplexy.
The precise cause of type 2 narcolepsy remains unknown. People with this type of narcolepsy don’t experience cataplexy or have low levels of hypocretin.
Some experts believe type 2 narcolepsy could be a precursor to type 1 narcolepsy, since some people go on to develop cataplexy later in life. But it is possible that the cataplexy symptoms just weren’t recognized before.
The main difference between the types is the presence of cataplexy. You won’t experience muscle weakness in type 2.
But in general, symptoms of type 2 narcolepsy are very similar to type 1. These symptoms include:
- sleep paralysis
- insomnia and other sleep problems
Around 65 per 100,000 people are believed to have type 2 narcolepsy. This figure includes people who experience secondary narcolepsy — narcolepsy due to an underlying illness or condition.
For instance, traumatic brain injury to the hypothalamus may cause narcolepsy in some people. If you’ve had a tumor or other disease in this same brain region, you may also develop secondary narcolepsy.
Many people with narcolepsy report that their sleepiness and cataplexy significantly interfere with their daily lives, including in school, work, relationships, and their social life.
While there’s currently no cure for narcolepsy, several treatments are available that can help you manage symptoms and overall well-being.
Other than specific treatments for cataplexy in type 1, treatment is the same for both types of narcolepsy.
A combination of medication, therapy, and lifestyle changes like a good sleep schedule is the most comprehensive treatment approach you can take. If you have co-occurring sleep disorders, these conditions should also be addressed.
Typically, medications are a common approach for treating narcolepsy. You may need more than one med to manage your condition, depending on your symptoms and concerns.
Most medications focus on treating EDS and cataplexy, but they may also help manage other symptoms like sleep paralysis and visual hallucinations.
Currently, there are several drugs approved by the
- sodium oxybate (Xyrem), a depressant used to treat cataplexy and EDS
- modafinil (Provigil) and armodafinil (Nuvigil), stimulants used to improve wakefulness and prevent EDS
- methylphenidate and amphetamine, which act as stimulants to treat EDS
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Your doctor might also recommend some medications off-label, such as other prescription stimulants to help with EDS, or a REM-suppressing antidepressant to treat cataplexy.
Cognitive behavioral therapy
In addition to medication, behavioral techniques can help many people manage narcolepsy symptoms.
Cognitive behavioral therapy (CBT) can help manage symptoms of depression and hypersomnia, commonly associated with narcolepsy. This therapy may focus on helping you stick to your medication schedules and engaging in good sleep hygiene practices.
A number of lifestyle changes can help you manage your symptoms:
- Improve your sleep hygiene. Establishing a good sleep routine and schedule can help people improve their overall sleep quality. Some ways to significantly boost your sleep include:
- getting enough hours of nighttime sleep
- avoiding caffeine, tobacco, and alcohol
- sleeping in an environment that promotes sleep
- Take scheduled naps. Naps of 15 to 20 minutes, scheduled throughout the sleepiest hours of the day, can help improve alertness and manage EDS. If you take this approach, your naps should stay under 30 minutes to avoid increased drowsiness.
- Exercise daily. Exercising for at least 20 minutes a day can improve sleep quality. If it’s higher intensity and more likely to wake you up, consider working out earlier in the day, rather than closer to bedtime.
- Avoid large meals close to bedtime. Heavy meals can sometimes make it more challenging to sleep.
- Try a relaxing bedtime ritual. Make your ritual your own — you may want to include taking a warm bath, reading, journaling, or meditating.
- Get the temperature right. Maintaining a higher body temperature with blankets and the right room temp can help improve your sleep quality. You can also try keeping a cooler skin temperature during the day to increase alertness.
If you’ve just gotten a new diagnosis of narcolepsy, you might find it beneficial to join a support group. This helps many to understand their condition and learn how to cope among people who have gone through it.
Along with medications and other treatments, support groups can offer you emotional support. If you’re feeling alone with your condition, this can relieve some of your isolation.
You can also ask a healthcare professional for educational and emotional support resources in your area.