"Simplest description: have you ever gone forty-eight hours without sleep? Its like that all the time. Sleep is not just one thing; its a lot of different components stuck together. In narcolepsy, the diverse manifestations of sleeping and waking states keep coming loose and sliding into each others territory." (nielsenhayden.com)
A chronic neurological wake/sleep disorder caused by the brains inability to regulate (control) normal sleep-wake cycles.
Narcolepsy is an Autoimmune Disorder, (May 3, Nature Genetics Journal) now believed to be the destruction of critical brain cells by the immune system. A specific immune cell has been found to be involved which destroys the hypocretin producing cells in the brain; a specific variation of a gene belonging to T cells specialized immune cells that play a role in all immune responses is present in narcolepsy.
Trauma to the same brain centers and cells can result in narcolepsy
Considered to be a disorder of the normal boundaries between the states of sleeping and waking, narcolepsy is technically defined by excessive daytime sleepiness and sleep attacks, in conjunction with one or more auxiliary symptoms, which can include cataplexy, hallucination, and sleep paralysis.
The line between being asleep and awake can be blurred. Signs and symptoms may vary in severity but never truly go away.
The quality of life impact of narcolepsy is profound, struggling to complete activities of daily living: in one study, the impact was rated greater than living with Parkinson's disease.
An unexpected loss of power in controlling your body, specifically the loss of muscle control, almost exclusive to narcolepsy. Sudden weakness caused by anger, excitement or amusement. Temporary paralysis of the muscles controlling posture and body movement.
Cataplexy involves regional muscle groups and may result in symptoms such as a drooping head, sagging jaw, slurred speech, buckling of the knees, or weakness in the arms.
EDS (excessive daytime sleepiness):
Fleeting urges to sleep, involuntary sleep episodes, overwhelming urge to sleep, and decreased alertness throughout the day.EDS reduces motivation and vigilance, interferes with concentration and memory, and increases irritability.
Intense vivid images, sounds and tactical sensations that make things seem real even though they aren't. Vivid dreams while falling asleep or waking up. Dream-like sensory and visual hallucinations experienced as reality.
Very real-seeming sounds, registered by the brain as "heard" and not "thought", often mundane speech and environmental sounds without other confirmation such as seeing. Disorienting and disturbing being unable to trust your senses.
SP (sleep paralysis):
Sleep paralysis is an inability to move or speak while falling asleep or when waking up. Generalized weakness upon waking or going to sleep, being conscious but unable speak, move, or breath deeply. May occur during micro sleep, and sleep intrusions during waking activity.
Idiopathic hypersomnia with long sleep time:
disabling daytime sleepiness, despite an increased nightly sleep time of more than 10 hours.
Extended sleep 12 to 14 hours every night with few interruptions, then extreme difficulty waking. Once awake, may appear still partially asleep, confused or drunk. May appear to stare blankly, semi-responsive, automatic behavior, hallucinations, may appear to forget doing simple activities. Headaches in about 30 percent of cases.
IH can make you even sleepier than someone who has narcolepsy, irresistible daytime sleepiness can be more severe with narcolepsy. Naps are often longer, and not refreshing.
(SDB) Sleep Disordered-Breathing
Obstructive apnea (OSA)- In this form of apnea, the muscles in the tongue, jaw and neck relax to the point of obstructing the upper airway. Loud snoring, gasping , also rousing from sleep to breathe; partly attributed to body mass or weight which creates neck, tongue or esophageal impediment.
Central apnea - Central apnea is when airways stay open but the diaphragm and chest muscles stop working, or autonomic breathing is inhibited at the brain (from accident, stroke, brain damage or deformity/anomaly of the brain stem, without obstruction and not characterized by gasping). This forces the sleeper to wake up several times a night to resume breathing.
Mixed apnea - Mixed apnea (both obstructive and central), usually a short period of central apnea followed by a longer period of obstructive apnea.
Complex sleep apnea - (recently described novel presentation of OSA, but upon application of positive airway pressure, exhibiting persistent central sleep apnea).
Cheyne Stokes respiration - ("tachypnea" rapid breathing) not identical with hyperventilation - necessary for gas-exchange of the body, and triggered physiologically, as after exercise when blood oxygen and blood carbondioxide levels are at certain levels.
Trance-like behavior doing things on "auto-pilot" for some time. Undertaking routine tasks without being conscious of doing them and most often not remembering.
During conversation to jump from one topic to another or just trail off and stop talking all together. Movements may be slow or clumsy, speech may be slurred, may be unresponsive or wake up suddenly. May be unpredictable or illogical.
Weakness, numbness, stumbling, dizziness, non-peripheral vision, "syncope", cataplectic muscle collapse, sudden onset sleep attack. Contributes to daily danger of injury and accidental spills, fires, breakage.
Extreme headache usually centered on one side of the head and accompanied by severe sensitivity to light and/or sound. Intense pain often causes vomiting. Migraines may be preceded and/or accompanied by "auras" which vary from victim to victim from dancing lights or "rainbow" visual disturbance, to full color "light shows".
Visual disturbances with or without headache pain (optical migraines) accompany migraine processes thought to be related to changes in blood flow in the brain. Episodes may progress from visual "auras" to temporary blindness.
Migraines are truly debilitating, rendering the sufferer incapable of moving without increasing the pain and making it difficult or impossible to think clearly. Because they are so pain intensive, migraine sufferers may take a few hours to a day to regain their energy and equilibrium.
Some triggers include red wine, alcohol, red meat, MSG, sodium, certain preservatives, medications, allergies, smells, lights, sounds and stressors.
Difficulty or inability to be roused from sleep, even through hours of repetitious alarms, calls, and visits. There may be no memory of the wake-up attempts, automatic behavior may be reported, may have dreams and hallucinations about wake-up attempts.
INS (interrupted nighttime sleep):
Intrusion of wakefulness during nighttime sleep, waking suddenly without warning or cause, feeling alert and briefly refreshed. Intermittent waking and sleeping at night.
Difficulty or inability to fall asleep; may be physically and mentally exhausted, sleepy and prepared for sleep, then lie awake for hours. May be unstressed, comfortable and on-schedule, every habit of night time sleep the same as usual, and remain awake.
Sudden onset sleep, involuntary and without warning, during activity or inactivity, at rest or in motion. Not associated with emotion or surprise as in cataplexy, also not conscious and able to see and hear as in cataplexy. complete transition from awake to deep dreamless sleep instantly, usually for only seconds.
Microsleeps can be so brief we are unaware of them, usually a fraction of a second. We may think something was forgotten, which was never actually heard, because the information was given during a split-second microsleep.
Similarly at risk for accidents (especially driving), injury and breaking things, and may awaken with shock and anxiety, disorientation, nausea and diffuse head and body ache.
Microsleep may be imperceptible to other people. Or one's head may drop and hang unnaturally, with the body upright. May slump forward (into a book, into a meal), jerk upright or repeatedly bite the tongue during microsleeps.
Micro sleep may repeat at intervals all day during periods of stress or illness, from unknown factors and aggravating conditions, possibly from chronic sleep deprivation, or chemical imbalance due to medication, diet, stress.
The direct transition from wakefulness to an REM sleep state.
Deeply disturbing fearful dreams, often with sleep paralysis and inability to wake from the dream. Lasting fear and anxiety after waking.
Overnight sleep testing monitors brain waves, eye movement, breathing, leg movement and other signs of sleep and dreams, while sleeping overnight in a sleep lab.
MSLT (multiple sleep latency testing) is a daytime sleep test, consisting of naps and waking periods. Sleep onset time, and the time it takes for REM sleep, and duration and kinds of dream periods are measured. Considered conclusive for diagnosis of narcolepsy.
REM (rapid eye movement) is the deepest sleep, when dreaming and rapid eye movement take place. Thought to be needed for refreshing sleep, and necessary for mental and physical function.
Strength of muscles may weaken, even with good tone. May be from lack of restorative sleep, from changes in oxygenation of the blood, from metabolism changes in blood sugars/proteins. Exertion may feel like there is strength but not endurance...like having a race car but no gas.
Depression Secondary to Narcolepsy/Cataplexy, Unresponsive or Generalized Depression: usually misdiagnosed, and ineffectively treated. Profound risk, acute in many with associated increased risk of suicide.
(HCRT, also called OREXIN OR HYPOCRETIN). HCRT is a hypothalamic peptide decreased or missing in Narcolepsy and Cataplexy, implicated in the regulation of sleep/wake, motor and feeding functions. There is a test that measures the level of hypocretin (HCRT) in cerebrospinal fluid. The HCRT test is not commercially available at this time but may be available through participation in certain research studies, (Stanford is one). The absence of hypocretin is diagnostic of narcolepsy with cataplexy. However, narcolepsy without cataplexy cannot be ruled out when HCRT levels are within normal range, which may be due to brain injury, acquired environmental and autoimmune damage, or systemic toxic damage .
HDL (Genetic Blood Markers or antigens): A genetic blood test or HDL test can be done to determine predisposition to narcolepsy, although this test is not diagnostic in itself. False negative results appear in racial subgroups and parts of the general population.
EEG (Electro Encephalogram): One standard documentation of narcolepsy is an EEG; unfortunately, 30% of all narcoleptics have normal EEGs.
re Night Terror/Nightmare:
Confusion stems from memory of dreams being every bit as detailed and vivid as real events. This intuition may be correct and could have a physiological explanation, says Emmanuel Mignot, a Howard Hughes Medical Institute investigator and director of the Center for Narcolepsy at Stanford University. In normal individuals, REM is not only associated with paralysis but also suppression of memory consolidation, which is why most people cant remember their dreams, he says. But theres some evidence that this suppression may be less powerful in narcoleptics. Their dreams may be laid down in memory in the same way as other events during the day. In rare cases this may even cause a schizophrenia-like problem in which the individual mistakes dreams for reality.
RLS (restless leg syndrome):
Body Pain, Headache:
Rapid Heart Rate:
Weight Gain/Weight Loss:
EKG (Electro Cardiogram):
Cardiac Echo Testing:
Brain Trauma/Deformity and Neurobiologic Disease:
Situations that Induce Cataplexy
No of Positive Responses (n=50) Situations
35 Feeling of Amusement
30 Athletic Activity
25 Resisting a Sleep Attack
18 Attempt at repartee
17 Response to a call for action
16 Sexual intercourse
1 Driving an automobile
(Adapted from Guilleminault C et al Arch Neurol. 1974 31: 255-261.)
Communication and routine acceptance between family members is very important and can keep cataplectic attacks from being unnecessarily upsetting and disruptive for both the patient and family.
this thread has posts from everyone, which I have incorporated here. the extra definitions at the bottom of the page are possible additions to the final description, I am not sure how to include them as "frequent or rare concurrent" or some other way.
Stages 3 and 4 are when growth hormones are released. Meaning body metabolism, body healing, tissue growth, and everything else effected by growth hormones is lacking in everyone with narcolepsy. This can affect the whole body, nervous system, digestion, everything.
Our stages are all mixed up. We may have a partial REM thing happening during the middle of the day. We also may go into stage 1 at various times all throughout the day.
When we go to sleep we go from stage 1 and usually straight to REM. This means we are basically missing huge parts or even ALL of stages 2-4. This is why most of us have other health issues, weight problems etc. Growth hormone is not being released properly, brain receptors are firing in mismatched orders.
I think this is very important in the definition of narcolepsy.