One of the most common sleeping disorders today is narcolepsy and it’s not something that should be taken lightly. What is narcolepsy? Out of curiosity, I searched for the answers myself so let me share it with you.
Narcolepsy, a long term neurological disorder that disrupts a person’s ability to regulate their sleep-wake cycles.
In other words, narcolepsy normally messes with your natural body clock, causing you to become excessively sleepy during the day and also become unusually tired all the time.
About 0.2 to 600 per 100,000 people are affected by narcolepsy, the condition often begins in childhood, with males and females being affected equally.
The symptoms of narcolepsy can last from seconds to minutes, but other symptoms may persist longer.
According to research, about 70% of those affected by narcolepsy may also experience episodes of sudden loss of muscle strength, or what they call “cataplexy”.
Cataplexy with narcolepsy happens when there is a lack of neuropeptide orexin, the protein-like molecules used by the neurons to signal and control brain activity regarding muscle movement.
Orexin is the neuropeptide that regulates arousal, wakefulness, and appetite.
This can also be followed by atonia, or the complete state of muscle paralysis during sleep.
It is when a person is not able to move at all when we are in deep sleep.
During this state, a person with narcolepsy may also experience vivid hallucinations of commonly terrifying things.
The person becomes unable to move or speak, but their consciousness is awake. It happens when falling asleep or waking up.
This is called, “sleep paralysis” and it’s known as a horrifying experience for patients with narcolepsy.
Apparently, these experiences can also be brought on by strong emotions of the patient.
Those with narcolepsy tend to sleep about the same number of hours per day as people without it, but it’s the quality of their sleep that tends to be affected negatively.
The exact cause of narcolepsy is unknown but there are several potential causes or factors that may worsen narcolepsy. In up to 10% of cases, there is a family history of the disorder.
Unfortunately, there is still no cure. However, a number of lifestyle changes and medications may help.
Causes
Exact cause is unknown, but the symptoms of narcolepsy can also be associated with other sleep related disorders such as sleep apnea.
The symptoms can also be caused by plenty of other factors which will be listed below.
- Genetics / Hereditary
- Family history of narcolepsy makes it possible that genetics play a role in influencing the condition.
There is a strong link with certain genetic variants since it was revealed that up to 10% of cases there is a family history of the disorder.
- Family history of narcolepsy makes it possible that genetics play a role in influencing the condition.
- Low levels of orexin
- Low level of neuropeptide orexin may be due to autoimmune disorders.
Low levels of orexin peptides have been associated with a past history of infection, diet, contact with toxins such as pesticides, and brain injuries due to brain tumors or strokes.
- Low level of neuropeptide orexin may be due to autoimmune disorders.
- Sleep deprivation
- Not getting enough sleep on purpose can possibly trigger narcolepsy. It’s important to get the right amount of sleep the body needs to prevent conditions like narcolepsy.
- Depression
- Mental health problems can also cause narcolepsy due to its symptoms such as insomniac episodes, which may lead to lack of sleep that may cause or worsen narcolepsy.
- Anxiety
- Other mental health problems like anxiety can also affect the person’s quality of sleep which may end up worsening or causing narcolepsy
- Drinking alcohol
- Drinking too much alcohol especially when close to bed time will definitely affect one’s quality of sleep, leading to narcolepsy
- Influence of drugs
- Certain sedatives can create different effects on our bodies and may trigger excessive sleepiness, which may be a risk factor for narcolepsy
- Heart failure
- Heart related problems is also associated with the potential causes of narcolepsy as the heart can affect our overall health.
- Sleep apnea
- Sleep apnea is the pauses in breathing during sleep, as it can affect quality of sleep, it is believed that it is a risk factor for narcolepsy
- Stress
- Mental or physical stress are both believed to potentially trigger narcolepsy, or worsen it. Psychological stress tends to be the most influencing factor for people with narcolepsy.
- Trauma
- Experts say that trauma can play a role in affecting narcolepsy the same way it can affect plenty of other disorders
- Infections
- Different kinds of infections may worsen bad sleeping habits such as narcolepsy
Diagnosis
- Polysomnography (Sleep Study)
- The overall method to diagnose sleep-related conditions is called a “polysomnography” or a sleep study / sleep test, it uses all possible methods to diagnose a person’s condition
- Actigraphy
- Actigraphy is similar to polysomnography but less expensive. It is used to record the sleep and wake cycles, by analyzing the patient’s limb movements.
It is also helpful in ruling out other sleep disorders, especially circadian disorders, leading to an excess of sleepiness during the day, too.
(Related: “How to Do a Sleep Study?”)
- Actigraphy is similar to polysomnography but less expensive. It is used to record the sleep and wake cycles, by analyzing the patient’s limb movements.
- Actigraphy
- The overall method to diagnose sleep-related conditions is called a “polysomnography” or a sleep study / sleep test, it uses all possible methods to diagnose a person’s condition
- Multiple Latency Test (MLST)
- Narcolepsy is also identified through “multiple sleep latency test (MLST)”, used to measure the time elapsed from the start of a daytime nap period to the first signs of sleep called “sleep latency”.
The MLST is based on the idea that the sleepier the person is, the faster the person will asleep.
- Narcolepsy is also identified through “multiple sleep latency test (MLST)”, used to measure the time elapsed from the start of a daytime nap period to the first signs of sleep called “sleep latency”.
- Epworth Sleepiness Scale (ESS)
- The severity of hypersomnia in people with narcolepsy must be quantified by subjective scales using the Epworth Sleepiness Scale, the scale used to determine the level of daytime sleepiness.
Three tests that are commonly used in diagnosing narcolepsy are the polysomnography, the multiple sleep latency test (MSLT), and administration of the Epworth Sleepiness Scale.
Other tests may also include the following below:
- The Maintenance of Wakefulness Test (MWT)
- This is a test that measures the ability to stay awake, used to diagnose disorders of excessive somnolence, such as hypersomnia, narcolepsy or obstructive sleep apnea.
During the test, patients sit comfortably and are instructed to try to stay awake.
- This is a test that measures the ability to stay awake, used to diagnose disorders of excessive somnolence, such as hypersomnia, narcolepsy or obstructive sleep apnea.
- Standford Sleepiness Scale (SSS)
- The Standford Sleepiness Scale is commonly used to measure sleepiness.
Diagnosis is typically based on the symptoms and sleep studies, after ruling out other potential causes. It becomes easy to diagnose narcolepsy when the main symptoms are often present.
However, if the sleep attacks are isolated and cataplexy is mild or absent, diagnosis can be more difficult. It is also possible for cataplexy to occur in isolation.
Types of Narcolepsy
There are four types of narcolepsy.
- Narcolepsy with Cataplexy
- Narcolepsy without Cataplexy
- Narcolepsy Unspecified
- Narcolepsy due to Medical Condition
- When a person is diagnosed with narcolepsy caused by a medical or neurological disorder
Differential diagnosis
There are other conditions that may be confused with or should be differentiated from narcolepsy.
Other sleep disorders may also display excessive daytime sleepiness or cause muscle weakness but it is not the same disease as narcolepsy.
Here are some common conditions that are often mistaken for narcolepsy.
- Seizures
- Cataplexy may be mistaken with seizures
- Sleep apnea
- Excessive daytime sleepiness or “hypersomnolence” maybe mistaken with sleep apnea.
Symptoms
The commonly known symptoms of narcolepsy is referred to as the “Tetrad of Narcolepsy”. These are cataplexy, sleep paralysis, hypnagogic hallucinations and excessive daytime sleepiness.
Please keep in my that these symptoms may not always occur in all patients. Here’s a list of all possible symptoms related to narcolepsy.
- 2 Main Symptoms of Narcolepsy
- Excessive daytime sleepiness (Hypersomnolence)
- Abnormal REM sleep
- Other symptoms of Narcolepsy
- Weakened muscles (Cataplexy)
- Cataplexy is an episodic loss of muscle function. It ranges from slight weakness such as limpness at the neck or knees, sagging facial muscles and weakness at the knees.
Inability to speak clearly, to a complete body collapse can also happen with cataplexy.
Episodes may be triggered by sudden emotional reactions such as laughter, anger, surprise, or fear. It may last for a few seconds to several minutes.
The person remains conscious throughout the episode. In some cases, cataplexy may resemble epileptic seizures.
Cataplexy can cause extreme anxiety, fear, and avoidance of people or situations that might elicit an attack.
- Cataplexy is an episodic loss of muscle function. It ranges from slight weakness such as limpness at the neck or knees, sagging facial muscles and weakness at the knees.
- Hallucinations
- People with narcolepsy may experience hallucinations when the brain wakes up during falling asleep or waking up.
Hypnagogic hallucinations are vivid dreamlike experiences and refer to the same sensations while awakening from sleep.
These hallucinations may manifest in the form of visual or auditory sensations.
- People with narcolepsy may experience hallucinations when the brain wakes up during falling asleep or waking up.
- Sleep paralysis
- Sleep paralysis is when a person is aware, but is unable to move or speak.
Whenever an episode occurs, most people experience hallucinations that tend to be related to seeing demons, weird creatures or such.
It is terrifying, but is not dangerous to a person’s actual health.
- Sleep paralysis is when a person is aware, but is unable to move or speak.
- Decreased ability to focus
- The poor quality of sleep can affect the brain’s functionality and the excessive sleepiness can take away a person with narcolepsy’s ability to focus
- Poor memory or memory loss
- Poor quality of sleep in people with narcolepsy can lower the brain’s capabilities and cause forgetfulness
- Daytime naps
- People with narcolepsy may not be able to avoid taking daytime naps
- Automatic behaviors
- Automatic behaviors are stimulus-bound impulses.
It occur when a person continues to function (talking, putting things away, etc.) during sleep episodes but awakens with no memory of performing such activities.
It is estimated that up to 40 percent of people with narcolepsy experience automatic behavior during sleep episodes.
(Related: REM Sleep Behavior Disorder)
- Automatic behaviors are stimulus-bound impulses.
- Night-time wakefulness or Insomnia
- People with narcolepsy tend to be more alert at night than they are during the day.
- Weakened muscles (Cataplexy)
- Rare Symptoms of Narcolepsy
- Super Taster Phenomenon
- Heightened sense of smell
- Heightened sense of taste
- Super Taster Phenomenon
Narcolepsy only has two main symptoms. One is excessive daytime sleepiness and the second is abnormal REM sleep.
The first one which is, excessive daytime sleepiness, often occurs despite getting enough sleep at night. This means that even if you get a good 6 to 8 hours of sleep, you can still feel excessively sleepy during the day.
Excessive sleepiness can vary in severity, and it appears most commonly during situations when the person is relaxed or at rest, meaning there are no physical activities or mental activities that require focus or energy.
The second strongest symptom of narcolepsy is abnormal REM sleep.
People with narcolepsy are unique in that they enter into the REM phase of sleep in the beginnings of sleep, even when sleeping during the day.
Patients with narcolepsy tend to become drowsy or fall asleep uncontrollably at almost anytime or anywhere even during inappropriate times, making it a dangerous condition.
Narcolepsy patients are not capable of experiencing the amount of restorative deep sleep that people without narcolepsy can experience.
The other symptoms may begin alone or in combination months or years after the onset of the daytime naps.
There are wide variations in the development, severity, and order of appearance of cataplexy, sleep paralysis, and hypnagogic hallucinations in individuals.
Only about 20 to 25 percent of people with narcolepsy experience all four symptoms.
The excessive daytime sleepiness generally persists throughout life, but sleep paralysis and hypnagogic hallucinations may eventually stop.
A rare subset of narcolepsy patients also experience a heightened sense of taste and smell known as the supertaster phenomenon.
Treatment
Unfortunately, there is still no cure for narcolepsy itself because the main cause of it is still unknown. However, a number of lifestyle changes and medications may help treat the symptoms.
- Medications
- Modafinil
- Sodium oxybate
- Methylphenidate
- Tricyclic antidepressants
- Selective serotonin reuptake inhibitors
Lifestyle changes include taking regular short naps and better sleep hygiene. Here’s a list of helpful lifestyle changes that can help keep narcolepsy moderated.
- 10 Tips for avoiding narcolepsy
- Follow a proper, healthy sleep schedule
- Sleep on time and avoid depriving yourself with sleep.
- Try to get plenty of exercises
- Keeping your body awake and properly energized can improve your overall health. But remember not to exercise too much and exercise only in the morning.
- Eat a healthy, balanced diet
- Your diet plays a role in improving the quality of your sleep.
- Avoid alcohol before sleep
- Alcohol can cause your body to become dysfunctional.
- Stop unnecessary drug usage
- When under the influence of drugs, a person’s body may become dysfunctional
- Treat other illnesses (mental illnesses)
- Focusing on your anxiety, depression and other mental health issues can help stop the symptoms of narcolepsy.
Your mental health is important and affects your overall physical wellness.
- Focusing on your anxiety, depression and other mental health issues can help stop the symptoms of narcolepsy.
- Do some therapeutic activities
- Relaxing before bed can also take your mind off your worries and help you sleep better.
- Manage your stress
- Stress, regardless if it’s physical or mental, can cause your brain to become less effective and lead to other problems and narcolepsy is one of them.
- Avoid sleeping with a heavy stomach
- Going to bed with a heavy stomach can create difficulty in breathing, it may disrupt the system inside your body and also trigger sleeping problems.
- Try to improve your surrounding environment
- Your surroundings can affect you, mentally, or physically. Even your bedroom can boost your mental health.
If possible, consider improving your lifestyle and surroundings.
- Your surroundings can affect you, mentally, or physically. Even your bedroom can boost your mental health.
- Follow a proper, healthy sleep schedule
Risks
Untreated narcolepsy can be dangerous for a person’s life. Its symptoms such as excessive daytime sleepiness, can lead to unwanted accidents. Here’s a list of possible risks caused by narcolepsy.
- Narcolepsy can cause:
- Death
- For rare cases, severe narcolepsy that may involve extreme sleep deprivation or severe insomnia may cause a person’s overall health to deteriorate.
It may not be be the direct cause of death itself, but narcolepsy can play a role in affecting it.
- For rare cases, severe narcolepsy that may involve extreme sleep deprivation or severe insomnia may cause a person’s overall health to deteriorate.
- Worsens other illnesses
- Having an unhealthy sleep hygiene due to narcolepsy is expected to worsen other illnesses as long as it is untreated.
- Heart problems
- Poor quality of sleep in people with narcolepsy can eventually affect the heart as well
- Depression
- Being unable to sleep properly can potentially affect a person’s quality of life.
It may lead to depression if narcolepsy continues to leave a negative impact on a person’s lifestyle.
- Being unable to sleep properly can potentially affect a person’s quality of life.
- Weight gain or loss
- Abnormal sleep hygiene with narcolepsy may also mess with your body’s hormone production, this may trigger unwanted or uncontrolled sudden weight gain or loss.
- Increases ADHD
- Being sleep deprived decreases the person’s ability to focus, worsening conditions such as ADHD.
- Daytime sleepiness
- Difficulty breathing at night can lead to restless sleeps, making you feel the need to stay asleep even during the day because your body couldn’t rest well at night.
- Insomnia
- Difficulty in breathing can lead to insomnia. Instead of waking up randomly at night, you will end up being unable to sleep.
- Seizures
- Sleep apnea is common in people with narcolepsy. Sleep apnea patients are more prone to seizures during sleep compared to epilepsy patients without sleep apnea.
- Irritability
- When you are sleep deprived, you will unconsciously lose control of your emotional stability. You can become irritable or easily frustrated with narcolepsy.
- Poor memory
- Narcolepsy causes sleep deprivation which may lower your brain’s performance as it affects the brain activity, causing poor memory in patients.
- Respiratory diseases
- Narcolepsy may be associated with sleep apnea, which is a respiratory disease that may cause other diseases that can worsen other illnesses.
- Driving accidents
- The lack of concentration and daytime sleepiness can lead to driving accidents when you have narcolepsy.
- Death
History
The term “narcolepsy” is from the French “narcolepsie“.
The French term was first used in 1880 by Jean-Baptiste-Édouard Gélineau, who used the Greek νάρκη (narkē), meaning “numbness”, and λῆψις (lepsis) meaning “attack”.
Related Questions
Can you legally drive if you have narcolepsy?
Yes, you can still legally drive if you have narcolepsy. However, you must declare your condition and provide a medical certificate stating that your doctor deems you able to control your excessive sleepiness.
Many people diagnosed with the disease are declared safe to drive but is reminded to know their limits.
How do you get disability for narcolepsy?
Narcolepsy is not recognized by the Social Security Administration (SSA) as a medical condition that qualifies for disability benefits.
However, it is possible to provide a residual functional capacity (RFC) assessment that provides evidence of your disorder and how it can affects your ability work.
You have to wait for the evaluation whether an individual with narcolepsy may qualify or not.
What is the main cause of narcolepsy?
It is believed that the main cause of narcolepsy might be caused by a lack of the brain chemical hypocretin or the neuropeptide orexin, the neuron that regulates sleep.
This deficiency is thought to result from the immune system mistakenly attacking parts of the brain that produce hypocretin.
However, it is still a fact that the causes of narcolepsy is still unknown.
