What Is Narcolepsy?
Narcolepsy is a brain and nervous system disorder that affects your ability to wake and sleep. People with narcolepsy have intense, uncontrollable daytime sleepiness. They may suddenly fall asleep at any time during any type of activity.
In a typical sleep cycle, we enter the early stages of sleep, then the deeper stages, and finally (after about 90 minutes) rapid eye movement (REM) sleep. People with narcolepsy go into REM sleep almost immediately in the sleep cycle and sometimes while they’re awake.
Type 1 narcolepsy comes with a sudden loss of muscle tone that causes weakness and makes you unable to control your muscles, called cataplexy. Type 2 is narcolepsy without cataplexy.
In many cases, narcolepsy isn’t diagnosed and therefore isn’t treated.
Symptoms of narcolepsy usually develop over a few months and last for the rest of your life.
What is the first sign of narcolepsy?
Most of the time,excessive daytime sleepiness (EDS) is the first sign you have narcolepsy. In general, EDS makes it harder to do everyday activities, even if you got enough sleep at night. The lack of energy can make it hard to concentrate. You have memory lapses and feel depressed or exhausted.
Other symptoms of narcolepsy
In REM sleep, we can dream and have muscle paralysis, which explains some of the other symptoms of narcolepsy:
- Cataplexy: This can cause problems ranging from slurred speech to total body collapse, depending on the muscles involved. It’s often triggered by intense emotions such as surprise, laughter, or anger.
- Hallucinations: These delusions can happen at any time and are often vivid and frightening. They’re mostly visual, but any of the other senses can be involved. If they happen as you’re falling asleep, they’re called hypnagogic hallucinations. If they happen when you’re waking up, they’re called hypnopompic hallucinations.
- Sleep paralysis: You may be unable move or speak while falling asleep or waking up. These episodes usually last a few seconds to several minutes.
- Disrupted sleep: You might have a hard time staying asleep at night because of things like vivid dreams, breathing problems, or body movements.
Types of Narcolepsy
There are 2 main types of narcolepsy. Which type you have depends on whether cataplexy is among your symptoms:
Narcolepsy type 1. About 20% of people with narcolepsy have type 1, which includes cataplexy. Cataplexy can be mild or so serious that it makes you fall to the ground.
Narcolepsy type 2. Most people (80%) with narcolepsy have this type, which doesn't involve cataplexy. It's harder to diagnose than type 1.
Causes of Narcolepsy
Experts don’t know what causes narcolepsy. They think it involves multiple things that come together to cause problems in your brain and disturb your REM sleep.
Scientists are getting closer to finding genes linked to the disorder. These genes control the production of chemicals in your brain that may signal sleep and wake cycles.
Some experts think narcolepsy may happen because your brain has a hard time making a chemical called hypocretin. They’ve also found problems in parts of the brain involved in controlling REM sleep.
Narcolepsy risk factors
Risk factors for narcolepsy include your age. Narcolepsy usually begins between the ages of 15 and 25, but it can show up at any age. If you have a family history of narcolepsy, your risk of getting it is 20 to 40 times higher.
About 1 in 2,000 people have narcolepsy. But experts think only about half of those who have it are diagnosed, since many other conditions cause daytime sleepiness.
The condition is thought to affect males and females at the same rate. But some research has suggested it's more likely in men and those who were assigned male at birth.
Symptoms of narcolepsy can look like those of other health problems. Your diagnosis might involve a physical exam and medical history. Your doctor might also ask you to keep sleep records to track of your symptoms and sleep times for a couple of weeks.
Tests for narcolepsy
- Polysomnogram (PSG): This is done in a sleep disorder clinic or a sleep lab. It’s an overnight test that takes constant measurements while you’re asleep to record problems in your sleep cycle. A PSG can help reveal whether you go into REM sleep at unusual times in your sleep cycle. It can rule out other problems that might be causing your symptoms.
- Multiple sleep latency test (MSLT): This is also done at a special clinic or lab. The test takes place during the day to measure your tendency to fall asleep and find out whether certain elements of REM sleep happen at unusual times during the day. You’ll take four or five short naps, usually 2 hours apart.
- Lumbar puncture. You get this procedure, sometimes called a spinal tap, in a hospital or outpatient facility. A doctor or nurse uses a needle to remove a small amount of spinal fluid from your back. The fluid is then tested to check the levels of hypocretin. Low levels could mean you have narcolepsy.
There’s no cure for narcolepsy. But treatment can help ease your symptoms and improve your quality of life.
Medications for narcolepsy
Drugs your doctor can prescribe to treat narcolepsy include:
- Stimulants to treat sleepiness
- Antidepressants to treat problems with REM sleep
- Sodium oxybate (Xyrem, Xywav) to treat cataplexy
- Pitolisant (Wakix) or Solriamfetol (Sunosi) to help you stay awake for longer periods
Alternative treatments for narcolepsy
There's little evidence that any alternative or natural treatment can reduce narcolepsy symptoms. But some people have found that massage therapy improves their sleep patterns.
Also, one small study found that meditation-relaxation therapy reduced how often people with narcolepsy had sleep paralysis. In this type of therapy, you learn techniques to reassure yourself, shift your focus, and relax your muscles.
Always check with your doctor before you try any alternative treatment.
Home remedies for narcolepsy
Some lifestyle changes can also help with narcolepsy symptoms:
- Stay away from caffeine, alcohol and nicotine.
- Follow a regular exercise and meal schedule. Eat smaller meals more often instead of heavy meals.
- Control your sleep schedule. Try to go to sleep and wake up at about the same time every day.
- Schedule several daytime naps, each lasting 10-15 minutes.
Narcolepsy Health Disparities
There's little research into how narcolepsy affects different genders and racial and ethnic groups.
But experts say that, on average, it takes 12 years longer for women to get a diagnosis than men. They also say narcolepsy tends to be under-reported in ethnic and racial minorities. One study found that Black Americans tended to get symptoms earlier in life and to have worse daytime sleepiness. That could mean the condition shows up differently in Black people than in other groups.
We do know that Black people are more likely to have sleep disorders in general than other groups in the United States. Because sleep quality is so important to health, this is thought to contribute to overall health disparities.
Complications of Narcolepsy
Narcolepsy can cause problems in several areas, including:
When you have narcolepsy, everyday activities like driving, cooking, and operating machinery can become dangerous. It's essential to know what things make you more likely to become inattentive or fall asleep. If you have cataplexy, be aware of what tends to trigger it. Talk to your doctor about what you're capable of and the best ways to stay safe.
People with narcolepsy tend to have trouble focusing and staying alert, which can interfere with work and learning. Medication and lifestyle changes can help. Accommodations like a flexible schedule and scheduled nap times may also help you perform at your best.
Relationships and social life
Mental fogginess, daytime sleepiness, memory problems, and cataplexy can make social interactions awkward. You might also feel embarrassed about your condition, since many people don't understand it. It can help to talk to family members and friends about your condition and ask for their support and understanding.
Untreated narcolepsy has been linked to high cholesterol, high blood pressure, and heart disease. People with narcolepsy are often deficient in the protein hypocretin, which helps lower blood pressure during sleep. Also, disrupted sleep is harmful to heart health.
Living With Narcolepsy
Treating your narcolepsy can help you manage the condition. But even effective treatment won't eliminate all symptoms. Lifestyle changes and coping strategies are important, too.
Some people report that low-carb diets, such as the Keto diet, help with their narcolepsy symptoms. But there's little research to back this up.
Some diet changes that can help include:
- Follow a diet that helps you get to a healthy weight and stay there. People with narcolepsy are at higher risk for obesity. And extra weight can affect the quality of your sleep.
- Eat smaller, more frequent meals during the day to reduce drowsiness. Avoid big meals near bedtime so they don't interfere with sleep.
- Reduce processed foods and added sugar. Big changes in your blood sugar levels affect your energy levels.
- Be careful with alcohol and caffeine, which disrupt sleep patterns.
Narcolepsy can affect you financially as well as physically and emotionally.
According to one study, medical costs for people with narcolepsy are about twice as much as for those without the condition. That includes medications as well as visits to the doctor's office and emergency room.
Other extra costs you might face include:
- Lost time or lower pay at work
- Expenses due to delays and problems with education
To keep yourself safe and be as productive as possible, you need to be aware of your limitations. It's also important to help others understand your condition. Try these techniques:
- Plan your days around the times your symptoms tend to bother you.
- Be open about your condition with those you interact with at work, school, and socially.
- Spend time outside or otherwise expose yourself to bright light during the day to help keep yourself alert.
- Tackle long or complicated projects in short bursts of time. Take a nap when you start to lose focus.
- If you feel sleepy while driving, pull over and take a nap.
- Tell your doctor if you notice any changes in your symptoms or side effects of your medication.
Narcolepsy and your mental health
People with narcolepsy are at higher risk of mental health issues such as depression, anxiety, and bipolar disorder. Not only are narcolepsy symptoms difficult to deal with, but disrupted sleep patterns are known to harm mental health. The stigma that narcolepsy often brings can increase feelings of shame and isolation.
Some steps you can take to protect your mental health include:
- Join a support group for narcolepsy, where you can share your struggles and get ideas for dealing with symptoms.
- Ask your doctor to help you find a qualified counselor or therapist.
Narcolepsy is a chronic (lifelong) condition. While it's not life threatening, it can be disruptive to your daily life. You may not be able to do certain things, such as swimming or driving, because they could be dangerous for you.
Can narcolepsy be cured?
While there's no cure for narcolepsy, most people see improvements with treatment.
What to expect with narcolepsy
Narcolepsy doesn't usually get worse over time. In fact, your symptoms may get better to some extent. But they'll never go away. Treatment can help you manage them, and you can also learn ways to adapt.
Can you prevent narcolepsy?
Because narcolepsy happens unexpectedly and doctors aren't sure what causes it, there's no known way to prevent it.
Conditions Similar to Narcolepsy
Some people with narcolepsy also have related problems, including:
- Periodic limb movement disorder (PLMD): Your leg muscles move without your control many times during the night.
- Sleep apnea: Your breathing often stops and starts while you sleep.
- Automatic behavior: You fall asleep during a regular activity like driving, walking, or talking. You continue the activity while asleep and wake up with no memory of what you did.
Also, many other conditions can cause symptoms similar to those of narcolepsy. That's one reason narcolepsy is hard to diagnose.
Other sleep disorders like insomnia and sleep apnea can cause daytime sleepiness. So can mental health conditions such as depression. Narcolepsy can also be mistaken for epilepsy or substance use disorder.
A similar condition called idiopathic hypersomnolence (IH) also leads to sleepiness during the day. But unlike those with narcolepsy, people with IH tend to sleep for long periods (often 10-11 hours at a time) and have a very hard time waking up.
Narcolepsy is a lifelong condition that affects almost every area of your life. Treatment and lifestyle changes can help improve your symptoms. You also need to be aware of your limitations and adjust your daily activities to help yourself adapt.