NARCOLEPSY (A guide)

In this article, you will find detailed information about the neurological disorder narcolepsy, its causes, treatments, diagnosis, and other factors.

WHAT IS NARCOLEPSY?

Narcolepsy is a neurological brain disorder specifically oriented with affecting the patient’s ability to wake up and sleep.

People who have narcolepsy tend to experience excessive daytime sleepiness and suddenly fall asleep at any time of the day during any activity they may be doing. 

In a normal sleeping cycle, we first enter early stages of sleep, and then we move into deeper stages and then finally achieve rapid eye movement or REM sleep.

People who suffer from narcolepsy can go to the REM cycle of sleep almost immediately and can do so even sometimes when they are awake.

There are two types of narcolepsy. 

Type one narcolepsy can be brought upon by a sudden muscle tone that can cause weakness and may leave you unable to control your muscles, better known as cataplexy.

Type two narcolepsy is experienced by people without cataplexy.

In many cases throughout the world, narcolepsy is no diagnosed an if often left untreated.

Even though normal people take 60 to 90 minutes to enter REM sleep, people with narcolepsy can fall asleep into a deep slumber sleep in the matter or a few minutes. 

It can greatly affect our daily activities, as people may unknowingly fall asleep even when they are in the middle of important activities such as driving, talking, eating, walking, etc.

Such instances can be very dangerous and prone to accidents. 

If narcolepsy is left undiagnosed it can interfere with other important aspects of body functioning whether they are social, psychological, or mental and inhibit work and social activities to such an extent that it can get weird for both the patient and the people who surround him or her. 

SYMPTOMS

Symptoms for narcolepsy can get worse with age and then continue for the person’s life. Some symptoms are:

• Excessive sleepiness: The patient tends to feel excessively sleepy during the daytime and fall asleep any time on any occasion, time or place, without the knowledge that they are falling asleep. For instance, a person with narcolepsy may fall asleep during a conversation and not be aware of it. It can have dangerous situations arising because of it since people with narcolepsy can fall asleep while driving and any other act which may put human life in danger.

• Loss of muscle tone:  Sudden loss of muscle tone, also called as cataplexy, is a condition reported in a number of cases of narcolepsy, and can cause physical changes, from slurred speech to generating complete weakness in muscles throughout the body. This condition may last up to a few minutes and is uncontrollable. It can be triggered by intense emotions experienced by the patient, usually laughter of excitement, but sometimes also by fear, anger or surprise.  People with narcolepsy can experience these episodes ranging from 2-3 episodes in a year to some patients having numerous episodes daily. Not every patient suffering from narcolepsy is sure to experience cataplexy in their lives. 

• Sleep paralysis: Sleep paralysis is the temporary inability to move or speak while either falling asleep or when waking up. Their episodes can be very brief, usually lasting for a few minutes, but can be very frightening to people who experience them. People who experience sleep paralysis are aware of their surroundings but usually, are unable to recall it afterward. It can normally occur during REM sleep and can prevent your body from acting out the activity when you are in sleeping mode. One thing to note here is that not all patients with sleep paralysis have narcolepsy.

• Changes in REM: REM sleep is where human experiences dream sequences. REM sleep occurs almost 60 to 90 minutes after one falls asleep but people with narcolepsy can transition to REM sleep much faster, usually within 15 minutes of falling asleep. 

• Hallucinations: People with narcolepsy experience specific kinds of hallucinations called hypnagogic hallucinations. They happen either while falling asleep or while waking up. People feel like there is a stranger in their bedroom, or they are being watched. They can be frightening since you aren’t in REM sleep yet and have started partially dreaming, causing you to believe that what is happening is real.

• Sleep disorders: People with narcolepsy may also have other sleep disorders such as obstructive sleep apnea, in which the patient may stop breathing in the middle of the night, restless leg syndrome, and even insomnia. People also experience automatic behavior during brief episodes and not remember it well later.  

Potential Causes of Narcolepsy

Exact causes of narcolepsy are unknown.

People who experience type 1 narcolepsy have low levels of hypocretin in their bloodstream, which is an important neurochemical in one’s brain that helps in regulating a normal sleep pattern when one is in a REM sleep cycle. 

Cataplexy is often experienced by people who have particularly low levels of this neurochemical and it is suspected that this is due to an autoimmune reaction by the body.

It is also likely that narcolepsy is linked to genetics when it comes to causative agents; however, the risk of passing on narcolepsy to a child is less than 1 percent for a parent. 

Narcolepsy affects both males and females in an equal amount and greatly undermines the overall quality of life and mental well-being in the sufferers.

The symptoms may start from an early age and may go undiagnosed and there is a huge amount of misdiagnosis when it comes to such disorders.

Therefore it can sometimes take years for someone to be diagnosed with such disorders. 

Brain injuries also cause narcolepsy rarely in patients due to tumors and other diseases that may prevail in the part of the brain that regulates wakefulness and REM sleep.

Autoimmune diseases may still be the higher cause of narcolepsy but narcolepsy is usually a result of a number of factors in one’s system.

Additionally, Narcolepsy can cause other disorders such as Primary Hypersomnia.

DIAGNOSIS

Narcolepsy is diagnosed by detailed clinical examinations and medical histories, which are essential for diagnosis and treatment of this disorder.

Patients are often asked by their doctors to keep a sleep journal with them noting their times of sleeping and waking up for a period of a few weeks. 

A physical exam then rules out, or in some cases identify, any neurological conditions that may be the reason for the appearing symptoms.

Two special tests that may be done are:

• Polysomnogram or sleep study: A sleep study is conducted overnight on the patient’s brain and muscle activity, breathing, eye movements and reveal whether REM sleep occurs early in the sleeping cycle of the patient or if he or she suffers from any other sleeping disorders such as sleep apnea.

• Multiple Sleep Latency Test (MSLT): An MSLT is an evaluation of daytime sleepiness of the patient by measuring how quickly the patient falls asleep and if they enter REM sleep or not. One the day after the patient may be asked to take short naps separated by two hours and can indicate excessive daytime sleepiness. However, individuals with narcolepsy also experience abnormality in the REM sleep cycle, as it can start early. 

It may help in measuring the level of hypocretin in the brain and spinal cord.

A sample of cerebrospinal fluid is drawn to perform this test using a lumbar puncture, which can tell the level of hypocretin.

Doctors also perform brain scans to ensure no other brain problems, usually an MRI or an EEG. 

TREATMENTS

There is no cure currently available for narcolepsy, but there are many medicines available that can change the course of one’s lifestyle.

When a patient experiences cataplexy often, the level of hypocretin is not reversible and is lifelong.

Some medications used to control the symptoms are as follows:

• Modafnil: The most important and first line of treatment in narcolepsy in the nervous system and it is controlled by stimulants such as Modafnil. It is usually prescribed first as it is not that addictive and had fewer side effects as compared to other stimulants. For most individuals, drugs are generally effective at reducing daytime drowsiness and improving alertness. 

• Amphetamine-like stimulants: Monadfil is not always effective, therefore people may also use stimulants that alleviate EDS. Their medications are carefully monitored as they have side effects like irritability, shakiness, nervousness, and disturbed heart rhythm and nighttime sleep disruption. In addition to such effects, doctors much are careful due to the potential abuse of amphetamine by people all around the globe. Such medications are prescribed with a lot of care. 

• Lifestyle changes: Doctors heavily suggest patients observe a healthy change in their lifestyle, usually by maintaining a normal state of alertness and seeking drug therapy if they are on heavy drugs for the matter. Moving towards a healthy pattern of living may also help people reduce the levels of depression in their everyday life. People who take heavy drugs for keeping their symptoms in check are closely monitored for their behavior and have tests so that a health care professional can check for overdose and misuse of certain stimulants. 

• Take short naps: Short naps throughout the day are suggested to patients as they may contribute to a healthier sleep cycle. Taking naps in the form of short sleep breaks can also help you towards a healthier brain and may lift off some of the drowsiness from your mood.

• Exercise: Exercising for at least 20 minutes per day is suggested by doctors at least 4 to 5 hours before going to sleep as it would help you ease into sleep and reduce anxiety as well. It can contribute to improving the quality of sleep and also avoid gaining excess weight, as slow metabolism can cause people with narcolepsy to gain weight excessively over a short period of time. Apart from exercise, mediation may also help to bring in some positive changes in their life. 

• Avoid heavy meals: Doctors suggest avoiding large and heavy meals right before going to bed as they can make it harder for people to sleep and can cause the patient to feel extremely heavy before going to sleep. People even tend to feel nauseous if they intake heavy meals before going to sleep.

Some useful resources

1. Wide Awake and Dreaming: A Memoir of Narcolepsy
2. The Nocturnal Brain: Nightmares, Neuroscience, and the Secret World of Sleep
3. Narcolepsy
4. Narcolepsy: Neurological Lessons About Narcoleptic Disorder
5. Expressions of my own ‘Narcolepsy with Cataplexy’: An onward roller coaster ride

Conclusion

Narcolepsy can cause serious problems for patients professionally as well as personally.

People tend to see you as lazy or lethargic, and not trust you with workloads and responsibilities that are important for you to excel in your career.

Intense feelings such as anger or joy can trigger cataplexy and can cause people to withdraw from emotional interactions with people, leading to a very dull and emotionless life. 

People are advised to be very safe while they are driving.

People are prone to physical harm and there are great risks of car accidents involving people with narcolepsy.

People are at an increased risk of an accident. People may also cut and burn themselves if they fall asleep while preparing food.

Gaining weight due to low metabolism is also likely to be a part of life with a patient who suffers from narcolepsy.

People who have a family member with narcolepsy have a 40 percent higher chance of developing narcolepsy themselves at a higher age.

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Magnesium+

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Weighted Blankets

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Sleep bands

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Clinically proven Audio guidance

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Frequently Asked Questions:

References

1. Narcolepsy – inability to wake up and sleep
2. Sleep paralysis and excessive sleep disorder
3. Narcolepsy – Causes and Symptoms
4. Facts about Narcolepsy and its different characteristics
5. Sleep education and detailed study about narcolepsy