Welcome to Everything Narcolepsy!

This website's 
goal is to reduce the misdiagnosis & mistreatment of narcoleptics though the promotion and sharing of narcolepsy information and resources found throughout the internet.

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What is Narcolepsy

What is Narcolepsy?
How Many People Have Narcolepsy?
What are Narcolepsy's Symptoms?

For a brief explanation of the basics by the Stanford Center for Narcolepsy 
click here.


Narcolepsy is an uncommon and unusual neurological sleep wake cycle disorder. It is currently believed that an autoimmune reaction causes the body to destroy its own brain's hypocretins and as a result, Narcoleptic brains misfire different sleep stages inappropriately throughout the day and night. This causes patients to experience some of the following: trouble concentrating, excessive daytime sleepiness, sleep attacks, hallucinations, poor coordination, trouble maintaining normal body temperature, autonomic behaviors, and some people even experience REM sleep's normal sleep paralysis during the day while awake. The picture below shows normal and Narcoleptic brain tissue samples demonstrating the missing 
hypocretins.)


A non-Narcoleptic person would have to go seven days without sleep in order to experience some of the symptoms an untreated Narcoleptic experiences everyday. No amount of sleep, determination, and homeopathic remedies can ever make a Narcoleptic person stay awake and focused all day because Narcoleptic brains cannot stay in the correct wake and sleep stages on their own. If an unmedicated Narcoleptic slept for 24 hours, he or she would still be sleep deprived because their brain can't get enough real deep sleep to prevent sleep intrusion while awake. 


Narcolepsy is permanent and incurable, but it's symptoms can be reduced with improved sleep hygiene, a nap schedule, and medications. Typical symptom onset occurs in the early stages of adolescence or puberty. The symptoms are usually attributed to other causes. Only 1 in 4 Narcoleptics' symptoms are ever accurately attributed to a possible case of Narcolepsy. The average symptom onset to accurate diagnoses rate is eleven years.


Many Narcoleptics develop Narcolepsy with Cataplexy. Early sudden onset of Cataplexy is rare but on the rise in some countries. The brain's of people with Narcolepsy with Cataplexy mistake certain strong emotions for REM dreams and misfire a temporary paralysis of the patient's voluntary muscles. This occurs to all normal sleepers when they dream at night so they don't act out their dreams. When a Narcoleptic brain misfires this command when awake, the result is a person who when they feel a certain strong emotion, they suddenly become weak and clumsy (partial Cataplexy) or they may instantly collapse to the ground unable to move or speak for up to 20 minutes (full Cataplexy.) During these attacks most patients are able to feel and hear what's going on around them, though some patients fall into a deep sleep shortly after the cataplexy attack begins. 


Laughter is the most common trigger of Cataplaxy which may account for why Narcolepsy with Cataplexy used to be referred to as "laughing sickness" and it may be where the phrase "weak from laughter" came from. Other common strong emotion triggers include: surprise, joy, orgasm, anger, sadness, or love. 


Cataplexy's emotion based triggering is the primary reason Narcolepsy is mistaken for a psychological problem. People with Narcolepsy are often mislabeled and mistreated by loved ones, employers, strangers, and even their doctors. As a result, they often fall short of their true potential in all aspects of their lives. Narcolepsy is often mistaken for selfish laziness, a lack of ambition, or lack of intelligence. Most patients are misdiagnosed with different conditions and treated with the wrong medications for years, though some antidepressants and anti seizure medications do help Narcoleptics because they suppress REM sleep and/or reduce the ability to feel certain emotions. Many Narcoleptics are judged as having psychological or character problems that seem to never get better. 


Narcolepsy is uncommon and patients accurately diagnosed with Narcolepsy are rare. Even after being properly diagnosed many Narcoleptics find their condition's validity being questioned by those not familiar with complicated invisible disabilities. The impact Narcolepsy has on a patient's life is most similar to that of patients suffering from Multiple Sclerosis.


                                       How Many People Have Narcolepsy?

The prevalence of Narcolepsy is similar to that of Parkinson's disease and Multiple Sclerosis, and five times more prevalent than Cystic Fibrosis, but Narcolepsy is far less well known and less studied. The National Institute of Neurological Disorders and Stroke estimates 1 in every 2,000 Americans have Narcolepsy (0.05%). The American Sleep Association estimates that about 125,000-200,000 Americans have Narcolepsy, but fewer than 50,000 (25%) are properly diagnosed. The incidence rate of Narcolepsy varies between countries. In Japan the incident rate is considered to be 1 in 600, in Israel it's 1 in 500,000. It is estimated that as many as 3 million people worldwide have Narcolepsy.

It's not surprising that most people (even most doctors) think they have never met a person who has Narcolepsy and most people don't know or understand what the condition is. It goes without saying that Narcolepsy is one of the most misdiagnosed, neglected, and misunderstood unusual neurological conditions in existence.

 

Narcolepsy affects men and women, and every ethnic group in a given country equally. Genetic risk of Narcolepsy has been shown to be statistically higher (1%-2%) within close relatives, but the risk is low compared to other genetic diseases.


Narcolepsy Symptoms:

 

The primary symptoms of Narcolepsy are excessive daytime sleepiness (with or without sudden sleep episodes) and abnormal REM sleep. Other, unusual symptoms of Narcolepsy are related to abnormal REM sleep, including hallucinations, sleep paralysis, and Cataplexy (sudden partial or full loss of muscle control.) This reaction is usually triggered by strong emotions such as laughter, sadness, surprise, or frustration. While not all people who have Narcolepsy suffer from Cataplexy, they all suffer from excessive daytime sleepiness. 

People with Narcolepsy suffer from some, but rarely all, of the following symptoms:


Excessive Daytime Sleepiness
 - Naps are refreshing, but the refreshment is short lived and the sleepiness or urge to sleep is often unfightable. This is the most common symptom amongst Narcoleptics. No matter how many hours an undedicated person with Narcolepsy sleeps, their brain always sleeps incorrectly because it is always slipping between wakefulness and the different sleep stages inappropriately, so they are profoundly more tired. Regular sleepers had to go 3 days without sleep to experience the degree of sleepiness people with Narcolepsy experience each day. People with this condition tend to be quickly exhausted by physical exertion, loud noise, extreme temperature changes, and other forms of stress. Recovery from stress caused exhaustion tends to be slow.

Cataplexy (loss of muscle control) -  The sudden partial or total paralysis of all voluntary muscular movement while awake, usually triggered by strong emotions. This symptom is very indicative of Narcolepsy and is associated with sudden onset REM sleep if greater than one minute. Regular sleepers' brains paralyze them when they enter REM sleep so that sleepers don't harm themselves when they experience strong emotions in their dreams. Narcoleptic brains sometimes mistake strong emotions for dreams even when the person is awake thus triggering full or partial voluntary muscle paralysis. Maybe just the head may flop over and arms become weak, or the person may completely collapse unable to move or speak, but they can hear and feel what's going on around them at least in the beginning if not the entire duration of the cataplexy attack. After a few seconds or up to 20 minutes the episode usually passes and recovery comes so quickly that strangers may think the person has faked a fainting episode. Cataplexy looks like an urgent medical emergency to strangers, but unless the person has injured themselves when they fell, no medical care is necessary. This is the most renowned REM related abnormality.  


Hypnagogic and / or Hypnopompic Hallucinations - This isn't daydreaming, this is real dreaming while awake and the brain mistakenly thinks the imaginative information is real. Half of all Narcoleptics experience occasional vivid visual, scent, or auditory sensations while falling asleep, upon awakening, or briefly during the day. These hallucinations sometimes are dreamlike and other times seem quite real and may be frightening and cause anxiety. Hypnagogic hallucinations take place during the transition from wakefulness to sleep. Hypnopompic hallucinations occur during the transition from sleep to wakefulness. These are REM related abnormalities. (The Spiritual Doorway in the Brain)

 

Sleep Paralysis - Inability to move or talk at the beginning or end of sleep for several seconds or minutes. Reported by half of all Narcoleptics, this phenomena may be quite frightening the first time it happens and some say they felt they could not breathe when in fact they can breathe but they couldn't increase their breathing to a faster rate to match the panic they felt the first time they lay in bed unable to move. This is another REM related abnormality. Everyone experiences paralysis when they enter REM sleep but Narcoleptic brains are out of sync with what sleep stage or state of wakefulness the body should be in so sometimes it takes a few minutes for the brain to release the control of voluntary muscles from REM sleep's grasp.

 

Insomnia - Trouble falling asleep at night. While most people with Narcolepsy need to sleep more often, they do not necessarily require more hours of sleep in a 24 hour day. Some people with Narcolepsy experience "nighttime wakefulness", occasional periods of wakefulness at night, with an elevated heart rate, hot flashes, and sometimes intense alertness.

 

Disturbed Nocturnal Sleep - Frequent awakenings and increased body movement while sleeping.


Microsleep - Very short sudden sleep episodes that may not even be noticeable.


Autonomic Behavior - Spontaneous production of often purposeless verbal or motor behavior without conscious self control or self awareness. This is the reason why people with Narcolepsy are notorious for misplacing common objects in unusual places with no memory of doing so. The longer a person with Narcolepsy has gone without a nap, the more frequent the occurrences. Autonomic Behavior can occasionally cause sufferers to awaken with injuries they don't remember occurring.

Nighttime Wakefulness - Brief burst of energy at night, a period of wakefulness at night sometimes accompanied by hot flashes, elevated heart rate and intense alertness. Some patients describe feeling suddenly elated, feeling full of good ideas, or suddenly darkly depressed and hopeless for several minutes before they fall asleep.


Short Sleep Latency Rate and Rapid Entry Into REM Sleep - Narcoleptics are unique in that they fall asleep often in less than 5 minutes and enter into the REM or dream phase of sleep right after falling asleep rather only after about 90 minutes. whereas most people take about 90 minutes to enter REM. Therefore, they experience the characteristics of REM sleep (vivid dreams and muscle paralysis) at the beginning of sleep, even if that sleep is during the day. Shorter naps are more refreshing for people with Narcolepsy than they are for normal sleepers. The sudden deep sleep often causes a disorientation about the duration of time that has passed while sleeping.


Focus, Learning, and Long Term Memory Problems
 
- Extreme sleepiness can impede the ability to concentrate and remember things. At least half of all Narcoleptics report serious  short term or long term memory problems. Most people with Narcolepsy have been diagnosed with ADD or ADHD prior to being diagnosed as have narcolepsy. It's not always later clear if the attention disorder diagnosis is still accurate or not. Some Neurologists believe that most attention and learning disorder diagnosises are in fact due to undiagnosed sleeping disorders.

 

Anxiety and Depression - Many of the Narcolepsy's symptoms can be frightening, injury causing, and/or humiliating thus causing sufferers to live in fear. The misunderstood nature of Narcolepsy can also cause others to blame a person with Narcolepsy for things that are not in their control. People with Narcolepsy may even blame and mislabel themselves. Sadly, many misdiagnosed people with Narcolepsy may take medications for their misdiagnosed conditions that may cause depression and increase sleepiness. The misunderstood nature of this condition can impair social, educational, and career performance. It can prevent patients from for-filling their potential despite their unaffected intelligence level and good psychological health. Isolation and depression are common among Narcoleptics and are especially common among undiagnosed people with Narcolepsy and Narcoleptics who do not drive. Majority of Narcoleptics report their life long friends they had before their Narcolepsy were less supportive, understanding, and helpful then friends they made after their Narcolepsy diagnosis.


Additional Sleeping Disorders - Many people with Narcolepsy also suffer from additional sleeping disorders such as sleep walking, sleep eating, restless leg syndrome, sleep apnea, circadian rhythm disorders, seasonal affective disorder, and insomnia. Most Narcoleptics have disturbed nighttime sleep.


Excessive Hunger and Obesity - The part of the brain that controls wakeful and sleep stages, also controls eating behaviors. Also, people with Narcolepsy also eat when tired in an effort to get more energy, but unfortunately they get less exercise because they are quickly exhausted by physical exertion and they suffer from excessive day time sleepiness.


Impaired Body Temperature Sensitivity & Regulation - The brains of people with Narcolepsy sometimes have a poor ability to maintain a normal body temperature, thus leaving them sometimes too cold and sometimes feverish. Patients may be more prone to sensitivities to extreme temperature and sudden temperature changes.

 

Additional Medical Problems, Often Auto Immune Related - Frequent bouts of strep and flu, fibromyalgia, cardiac problems, learning disabilities, ADD and ADHD, digestive problems, sinus troubles, recurring headaches, thyroid troubles, severe allergies, and more are all common dual diagnosises for people with Narcolepsy.

Living with Narcolepsy - FANTASTIC audio program by the New York Times  

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