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Welcome to the official website for NAPS: Narcolepsy Awareness Programs and Services. NAPS was founded to increase awareness of Narcolepsy, through education and the creation of locally based services. We are the only patient advocacy group specializing in Narcolepsy in Canada. NAPS is a registered Canadian Not-For-Profit Corporation.
If you would like to reach out to a representative of NAPS: Narcolepsy Awareness Programs and Services, please contact us via e-mail. We love hearing from people that have been helped by NAPS, as well as those seeking to learn more about Narcolepsy.
We take a modern approach to educating the public about Narcolepsy through social media, flash mobs, and online campaigns. This is 21st century patient advocacy.
NAPS: Narcolepsy Awareness Programs and Services strives to provide accurate information about Narcolepsy in a way that is tailored to your specific situation. Click on the specific categories below, or check out our general resources.
“I wish that I knew how other PWN managed work/school/dating/life.”
This group of articles focuses on life with Narcolepsy, including coping mechanisms, alternative therapies, and advice for other narcoleptics.
“I wish that my husband didn’t call me lazy when the dishes aren’t done.”
These resources aim to share the things that PWN want to tell their friends and family, but don’t always have the courage to say.
“I wish my dad played with me more and slept less.”
This section deals with Narcolepsy in an age appropriate way so that parents, teachers, and caregivers can explain Narcolepsy to children.”
Biology and genetics play a big role in Narcolepsy. We aim to translate these complex medical terms into a language that the general public can understand in order to increase education about Narcolepsy.
Narcolepsy is a chronic neurological disorder characterised by bouts of excessive sleepiness, periods of insomnia, and disrupted night time sleep. Basically, people with Narcolepsy have a mixed up internal clock that leads to an inability to regulate their sleep/wake cycles. Approximately 60% of people with Narcolepsy experience Cataplexy; a sudden feeling of muscle weakness, in one or more areas of the body. It is almost always brought on by intense emotions, such as anger, surprise, or laughter. The parts of the body that are affected range from facial muscles (example: slurred speech or stuttering) to knees and legs (example: buckled knees) to full body (example: falling to the floor or complete inability to move or communicate). Other common symptoms include vivid dream-like images or hallucinations, asleep paralysis, brain fog (confusing/difficulty concentrating/loss of short term memory), and automatic behaviour.
It is important to note that the symptoms vary from person to person.
The most common major symptom, other than excessive daytime sleepiness (EDS), is Cataplexy, which occurs in about 70 percent of all people with Narcolepsy. Sleep paralysis and hallucinations are somewhat less common. Only 10 to 25 percent of affected individuals, however, display all four of these major symptoms during the course of their illness.
EDS, the symptom most consistently experienced by almost all individuals with Narcolepsy, is usually the first to become clinically apparent. Generally, EDS interferes with normal activities on a daily basis, whether or not individuals had sufficient sleep at night. People with EDS describe it as a persistent sense of mental cloudiness, a lack of energy, a depressed mood, or extreme exhaustion. Some people experience memory lapses, and many have great difficulty maintaining their concentration while at school, work, or home. People tend to awaken from such unavoidable sleeps feeling refreshed and finding that their drowsiness and fatigue subsides for an hour or two.
Cataplexy is a sudden loss of muscle tone while the person is awake that leads to feelings of weakness and a loss of voluntary muscle control. Attacks can occur at any time during the waking period, with individuals usually experiencing their first episodes several weeks or months after the onset of EDS. But in about 10 percent of all cases, cataplexy is the first symptom to appear and can be misdiagnosed as a seizure disorder. Cataplectic attacks vary in duration and severity. The loss of muscle tone can be barely perceptible, involving no more than a momentary sense of slight weakness in a limited number of muscles, such as mild drooping of the eyelids. The most severe attacks result in a complete loss of tone in all voluntary muscles, leading to physical collapse during which individuals are unable to move, speak, or keep their eyes open. But even during the most severe episodes, people remain fully conscious, a characteristic that distinguishes cataplexy from seizure disorders. Although cataplexy can occur spontaneously, it is more often triggered by sudden, strong emotions such as fear, anger, stress, excitement, or humor. Laughter is reportedly the most common trigger.
A clinical examination and exhaustive medical history are essential for diagnosis and treatment. Th average diagnosis time is 10 years, because it is often misdiagnosed. Two tests in particular are essential in confirming a diagnosis of narcolepsy: the polysomnogram (PSG) and the multiple sleep latency test (MSLT).
The PSG is an overnight test that takes continuous multiple measurements while the individual is asleep to document abnormalities in the sleep cycle. It records heart and respiratory rates, electrical activity in the brain using electroencephalography, and nerve activity in muscles through electromyography. A PSG can help reveal whether REM sleep occurs at abnormal times in the sleep cycle and can rule out the possibility that an individual’s symptoms result from another condition.
The MSLT is performed during the day to measure a person’s tendency to fall asleep and to determine whether isolated elements of REM sleep intrude at inappropriate times during the waking hours. The sleep latency test measures the amount of time it takes for a person to fall asleep. As part of the test, an individual is asked to take four or five short naps usually scheduled 2 hours apart over the course of a day. Because sleep latency periods are normally 12 minutes or longer, a latency period of 8 minutes or less suggests a disorder of excessive daytime sleepiness. However, a sleep latency of 8 minutes or less can be due to many conditions other than narcolepsy. The MSLT also measures heart and respiratory rates, records nerve activity in muscles, and pinpoints the occurrence of abnormally timed REM episodes through EEG recordings. If a person enters REM sleep either at the beginning or within a few minutes of sleep onset during at least two of the scheduled naps, this is considered an indication of narcolepsy. Other reasons for REM sleep on the MSLT must be ruled out, such as the effects of medication and disrupted sleep from sleep apnea or an irregular work-rest schedule.
Narcolepsy cannot yet be cured, but some symptoms can be managed. Narcolepsy varies from person to person and not all treatments are effective for all PWN. When cataplexy is present, the loss of hypocretin is believed to be irreversible and life-long. But EDS and cataplexy can be controlled in most individuals with drug treatment and lifestyle changes.
Currently available medications do not enable all people with narcolepsy to consistently maintain a fully normal state of alertness. Drug therapy should accompany various behavioral strategies according to the needs of the affected individual.
Many individuals take short, regularly scheduled naps at times when they tend to feel sleepiest.
Improving the quality of nighttime sleep can combat EDS and help relieve persistent feelings of fatigue. Among the most important common-sense measures people can take to enhance sleep quality are:
Exercising for at least 20 minutes per day at least 4 or 5 hours before bedtime also improves sleep quality and can help people with narcolepsy avoid gaining excess weight.
Doctors prescribe central nervous system alerting agents such as modafinil and amphetamine-like stimulants such as methylphenidate to alleviate EDS and reduce the incidence of sleep attacks. For most people these medications are generally quite effective at reducing daytime drowsiness and improving levels of alertness. However, use of these medications may be associated with several undesirable side effects and must be carefully monitored.
Treatments for Narcolepsy exist, but they are not always easily accessible for patients. The next big scientific breakthrough for Narcoleptics could be just around the corner.
‘Sleeping is no mean art: for its sake one must stay awake all day.’ ~Friedrich Nietzsche
© 2014 NAPS Inc *All content is for educational purposes only and should not be considered to be medical advice.*