Narcolepsy is a medical condition many don’t know much about. In fact, the most some people know about this sleep disorder comes from sitcoms and screwball comedies. But for those who suffer from narcolepsy, it’s no laughing matter. And while this condition isn’t necessarily common, it’s also not as rare as you might think.
What is Narcolepsy?
Narcolepsy is a neurological disorder that affects people of all ages, and both genders. And it’s estimated that about 1 in every 2000 people suffer from some form of narcolepsy.
Individuals with this chronic sleep disorder often experience Excessive Daytime Sleepiness, and can find it difficult to stay awake for extended periods of time.
They can also experience “sleep attacks.” During these episodes, a person with narcolepsy falls asleep uncontrollably, even in the midst of doing something like cooking or driving.
For most people, the sleep cycle begins with the NREM (non-rapid eye movement) stage. As they fall asleep, their brain waves begin to slow down. After spending about an hour in NREM sleep, brain activity changes again, and they move into the REM (rapid eye movement) stage. REM sleep is a deeper sleep stage, during which we do most of our dreaming. This stage typically lasts for about 90 minutes before we move into the next stage of the sleep cycle.
If you have narcolepsy, things might play out a little differently. When you’re falling asleep and beginning a sleep cycle, you might not go through the NREM phase of sleep at all. Instead, you might jump to REM sleep almost immediately.
But this doesn’t just happen when people with narcolepsy are trying to go to sleep. They can also experience REM during their waking hours, especially if they’re drowsy.
Two common symptoms of narcolepsy are muscle paralysis and hallucinations. And these symptoms are similar to the sleep paralysis and dreams we typically experience during REM sleep.
While an individual can develop narcolepsy at any age, most people begin to show symptoms of this condition between the ages of 10 and 30. And if you have someone in your family who has narcolepsy, you are more likely to develop it yourself.
Many people who have narcolepsy also suffer from another sleep disorder, like sleep apnea or restless leg syndrome. And narcolepsy is sometimes mistaken for other sleep problems.
Medical experts believe narcolepsy is under-diagnosed. Many people who suffer from this condition don’t even know it and, as a result, don’t receive the proper treatment.
Types of Narcolepsy
There are two types of narcolepsy, one more severe than the other.
Type 1 narcolepsy is sometimes referred to as narcolepsy with cataplexy.
What is narcolepsy with cataplexy?
Some people can suffer a loss of muscle tone when they experience a strong emotion, like excitement or anger. And this loss of muscle tone is called cataplexy.
Type 2 narcolepsy is not accompanied by cataplexy. However, some who start out with type 2 narcolepsy develop type 1 narcolepsy.
Coping with Narcolepsy
Narcolepsy can have a negative impact on your daily life, your relationships, and your performance at work or at school.
Many people don’t know much about narcolepsy, and how truly debilitating it can be. As a result, they might perceive someone who has this condition as just lazy.
If you have narcolepsy, you might feel embarrassed, or even ashamed, to tell anyone. But you’ll be better able to cope with this sleep disorder if others (including family members, friends and employers) truly understand the seriousness of your condition.
There’s no cure for narcolepsy. But receiving the proper treatment can help you manage your symptoms, and will drastically improve your quality of life.
Causes of Narcolepsy
What causes narcolepsy?
No one really knows for sure.
Some researchers believe narcolepsy, especially type 1 narcolepsy, is related to a deficiency in the production of hypocretin. Hypocretin is a neurochemical produced by the brain that helps to regulate REM sleep. Researchers aren’t entirely sure what causes a deficiency in hypocretin production, but those who experience cataplexy also seem to have very low hypocretin levels.
There’s also a good chance that narcolepsy is genetic. But that doesn’t mean parents with narcolepsy will pass the condition on to their children. In fact, it’s very rare for a parent with this sleep disorder to have a child who also has narcolepsy.
The exact cause of narcolepsy has been hard for researchers to pin down. Some believe there’s no one thing that causes someone to develop condition. Instead, it’s most likely a combination of several different factors coming together in specific ways that cause a person to develop this sleep disorder.
Symptoms and Side Effects of Narcolepsy
Does narcolepsy get worse as you get older?
In some cases, the answer is yes. For some, narcolepsy symptoms continue to get worse for a few years after they start to appear. Then the symptoms will level out, and remain more or less the same.
Many of the symptoms of narcolepsy can be dangerous, at least indirectly. This is why it’s important for anyone who suspects they have this condition to seek medical help.
Here are some of the most common narcolepsy symptoms.
Excessive Daytime Sleepiness
You might be wondering, “What are the early signs of narcolepsy?”
Well, one of the earliest in most cases is Excessive Daytime Sleepiness, or EDS. This is usually the first symptom a person with narcolepsy will experience. It is also the most common symptom of this sleep disorder.
Excessive Daytime Sleepiness can make it difficult to engage in normal activities during your waking hours. Even if you get a good night’s sleep, chances are you’ll still experience EDS the next day.
EDS can cause make you feel so tired that you can’t function to the best of your ability in most situations.
Some of the symptoms of EDS include:
- Extreme fatigue and exhaustion.
- Lack of focus.
- An inability to concentrate.
- Decreased alertness.
- Mental cloudiness.
- Decreased energy.
- Memory problems.
- Feelings of depression.
Some people with narcolepsy can fall asleep at any time, without warning, no matter where they are or what they’re doing. People prone to sleep attacks can nod off uncontrollably while in the middle of a conversation, while eating lunch, or even when they’re cooking.
An individual experiencing a “sleep attack” can remain asleep for just a few minutes, or as much as half an hour. When they wake up, they might feel rested and refreshed. But it might not be long before they start to feel drowsy again.
Sometimes, an individual will engage in automatic behavior during a sleep attack. For example, say they fall asleep while performing a familiar task, like writing, or cutting up food. They might continue on with the task, at least mechanically, even while asleep. When they wake up in a minute or two, they’ll see the results of their efforts (which will usually be subpar), but won’t actually remember doing what the evidence says they did.
Many of the symptoms of narcolepsy can be dangerous. And that especially applies to sleep attacks. If a person falls asleep at the wrong time, they can end up hurting themselves or others.
For example, if someone falls asleep while driving a car, there is a very good chance that they will end up causing an accident. It might be a relatively minor fender bender during which no one gets hurt. Or the accident could be a lot more serious.
Food preparation can also be risky for someone prone to sleep attacks. If a person falls asleep while using a knife to cut up ingredients, they could cut themselves, possibly severely.
And if someone falls asleep with food cooking on the stovetop, a fire could be the result.
Cataplexy, a sudden and uncontrollable loss of muscle tone, is a symptom of type 1 narcolepsy. This symptom causes an individual to feel weak. They will also experience a sudden loss of voluntary muscle control.
Cataplexy episodes can last for just a few minutes. But the experience is usually disturbing, no matter how brief.
The cataplexy symptoms a person experiences will depend on the muscles that are involved. Some of the possible symptoms include:
· Slurred speech.
· Complete weakness of some muscles.
· Total body collapse.
Cataplexy is triggered by strong and intense emotions. The emotions can be negative, like anger or fear. But this symptom is usually triggered by positive emotions, like excitement, joy or happy surprise. Laughter can also trigger cataplexy.
Many people who are prone to cataplexy avoid situations in which they might experience strong emotion. As a result, they often miss out on spending time with family and friends, and enjoying new and fun experiences.
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While anyone with type 1 narcolepsy will experience cataplexy episodes, their frequency and severity will vary from person to person. Some will experience cataplexy episodes only once or twice a year. Others might have one or more cataplexy episodes every day.
Some people with narcolepsy experience sleep paralysis, meaning they are temporarily unable to speak or move. This either happens when they are falling asleep, or when they are waking up.
Sleep paralysis episodes tend to be brief. Some last for a few minutes. And others last for just a few seconds.
Sleep paralysis doesn’t do any lasting damage. Once the episode ends, the sufferer makes a quick and complete recovery, regaining the ability to move and speak as well as they did before the episode.
Experiencing sleep paralysis episode can be frightening, even if it’s happened before. A person experiencing sleep paralysis is usually fully aware of what’s going on, they just can’t move or talk. When the episode is over, they remember every unpleasant moment of it. And they often experience some anxiety because they’re worried it will happen again.
Sleep paralysis is not necessarily a sign of narcolepsy. Many people who don’t have narcolepsy sometimes wake up to find they can’t move or speak. However, if you experience sleep paralysis episodes and you’ve shown signs of some other narcolepsy symptoms, it might be time to see a doctor.
Not everyone with narcolepsy experiences hallucinations, but many do. These delusional events can be very vivid and, as a result, extremely frightening.
Hallucinations that occur while you’re falling asleep are called hypnagogic hallucinations. And hallucinations that occur when you’re waking up are called hypnopompic hallucinations.
The REM stage of the sleep cycle is when most of our dreaming occurs. A person with narcolepsy can experience REM sleep very early in the sleep cycle, sometimes bypassing other sleep stages. They can also experience REM while still awake.
An individual might experience hallucinations if they start dreaming before they’re fully asleep. These dreams can feel very vivid and real, which is what can make them so scary. And they can affect any of your senses or perceptions. For example, a person having a hypnagogic might see or hear something that isn’t there. Or they might strongly feel there’s someone else in the room with them, even though they are alone.
Narcolepsy Diagnosis and Treatment
Many of the symptoms of narcolepsy have the potential to be dangerous, at least indirectly. So if you suspect you might have this sleep disorder, you should seek medical help sooner rather than later.
It’s true that there’s no cure for narcolepsy. But receiving the proper treatment for this medical condition can drastically improve your quality of life. Even just knowing what’s causing your fatigue, memory problems, or sleep paralysis can make a huge difference.
While physical examinations are a part of the process of diagnosing narcolepsy, they usually aren’t enough on their own. A doctor or sleep specialist will also employ other methods to determine whether or not your symptoms are caused by this specific condition.
Here are some of the methods physicians use to diagnose narcolepsy.
A Sleep Diary. You might be asked to keep a sleep diary for a week or two. In the diary, you record your sleep patterns, from how long it takes for you to fall asleep at night, to how often you nod off during the day.
The Epsworth Sleepiness Scale. A series of questions are used to determine the severity of your Excessive Daytime Sleepiness. As an example, you’ll be asked how likely it is for you to doze off in certain situations.
A Polysomnogram (or PSG). A polysomnogram is an overnight test. It’s usually performed in a sleep lab, a sleep disorder clinic, or some other medical facility. As you sleep, you are monitored for any abnormalities in your sleep cycle, like REM sleep occurring at unexpected times.
A Multiple Sleep Latency Test (or MSLT). During the day, you take 5 or so short naps spaced about 2 hours apart, and you are observed to see how long it takes you to fall asleep. If you have narcolepsy, you’ll usually fall asleep very fast. You’ll also enter the REM stage of the sleep cycle a lot faster than is typical.
Treatments for Narcolepsy
What is the most effective treatment for narcolepsy?
While there are many different treatments being studied for their effectiveness, prescription medications are the most common and effective treatment for narcolepsy.
While these medications won’t cure narcolepsy, they can help manage and alleviate some of the frightening and disruptive symptoms of this sleep disorder.
Medications Used to Treat Excessive Daytime Sleepiness
Stimulants are often used to combat daytime drowsiness, making it easier for narcolepsy sufferers to stay awake during the day.
Stimulants can have side effects, like nausea, anxiety, headaches, and heart palpitations. And some stimulants, especially older ones, have the potential to be addictive.
Fortunately, there’s less risk of addiction with newer stimulants. They are also less likely to cause side effects like anxiety and nausea.
Medications Used to Treat Sleep-Related Symptoms
SSRIs (selective serotonin reuptake inhibitors) and SNRIs (serotonin and norepinephrine reuptake inhibitors) are often used to suppress REM sleep. This helps to alleviate symptoms like sleep paralysis and hypnagogic hallucinations.
These drugs are also sometimes used to treat cataplexy.
Some potential side effects of these medications include insomnia and weight gain.
Medications Used to Treat Cataplexy
One medication that’s an extremely effective treatment for cataplexy is Xyrem (or sodium oxybate). Xyrem can also help you sleep better at night, so you won’t be as tired during the day. And when used in high doses, Xyrem can help to combat daytime sleepiness.
Some of the side effects of Xyrem include nausea and bed wetting. If you sleepwalk, Xyrem can make that condition worse. And it can be extremely dangerous to mix narcotic pain relievers, alcohol, or other sleep medications with Xyrem.
There are several other medications used to treat cataplexy, like Tricyclic antidepressants. But these and other antidepressants can have side effects, like lightheadedness and dry mouth.
Lifestyle Changes and Precautions
While there’s no cure for narcolepsy, making a few changes to your lifestyle can help you manage your symptoms. And taking a few precautions can help you deal with potentially consequences of symptoms like Excessive Daytime Sleepiness.
Keep in mind that, for narcolepsy, lifestyle changes usually aren’t enough on their own. But lifestyle changes combined with the proper medications can drastically decrease the negative effects this sleep disorder can have on your life.
Here are a few things you can do to deal with narcolepsy.
Stick to a Schedule
You should go to bed at the same time every night, and get out of bed at the same time every day, even on weekends. Sticking to a regular meal schedule can also help narcolepsy sufferers.
Take Naps throughout the Day
Regular naps will help to alleviate some of the drowsiness you feel over the course of a typical day. When you wake from a nap, you will feel refreshed and alert.
Try to take naps that are at least 20 minutes long. And if you have enough time for a longer nap, go for it.
But if you don’t have time for a long nap, napping for even 10 or 15 minute can help.
Avoid Things That Can Make Your Symptoms Worse
Caffeine, nicotine and alcohol can make narcolepsy symptoms worse in various ways.
If you drink caffeinated coffee too close to your bedtime, it could make it harder for you to get to sleep that night. As a result, you’ll feel more tired and drowsy the next day.
Large, heavy meals can also make you feel drowsy.
Some over the counter medications, like those for colds and allergies, can also make you feel drowsy.
Get Regular Exercise
Physical exercise can be stimulating, and help to fight off drowsiness.
Taking a brisk walk, or doing a cardiovascular workout, will make you feel more awake and alert. Engaging in physical activity during your waking hours will also help you to sleep better at night.
But make sure your exercise session ends at least four hours before you go to bed. If you exercise too close to your bedtime, you might be so stimulated that you have a hard time falling asleep.
If a task is boring or monotonous, it might not be long before you start to feel sleepy. When that happens, take a break. And try to do something physical, like walking around the room or going to get a snack.
Take Precautions When Driving
Driving can be a risky proposition for someone with narcolepsy. But there are things you can do to minimize the risks.
If you start to feel sleepy while driving, even if you’re close to your destination, stop and take a break. And if you feel drowsy before you even get behind the wheel, don’t drive.
It’s recommended that those with narcolepsy don’t drive for long stretches. But if you don’t have a choice for some reason, don’t try to make the trip alone. You need a driving buddy, someone you can switch off with at regular intervals.
When you aren’t the one behind the wheel, allow yourself to nap, so you’ll feel rested when it’s your turn to drive. If you start to feel sleepy while you’re driving, don’t try to keep going. Stop and walk around for a while, to see if the physical activity helps. If it doesn’t, switch up with your driving buddy, and let them take the wheel until you feel more awake and alert.