By | March 5, 2018

Narcolepsy is a Neurological disorder that affects sleep, it is Not a sleep disorder! It took years to get that across to both patients and medical professionals, please don’t go around saying it’s a sleep disorder as if we would just take naps we’d be fine!

This is the current definition of Narcolepsy with a stupid example at the end. I just typed definition of Narcolepsy and this is what popped up first, this is the kind of thing we PWN (Persons With Narcolepsy) have to fight to change every day:

Narcolepsy: A neurological disorder that is marked by the recurrent, sudden, uncontrollable compulsion to sleep. Narcolepsy is often associated with cataplexy (a sudden loss of muscle tone and paralysis of voluntary muscles associated with a strong emotion), sleep paralysis (immobility of the body that occurs in the transition from sleep to wakefulness), hypnagogic hallucinations (presleep dreams), and automatic behaviors (such as doing something ‘automatically’ and not remembering afterward how one did it). The causes of narcolepsy are unknown.

Narcolepsy is not a fatal disorder in itself, but it can lead to fatalities. For example, affected persons may fall asleep while driving. Also known as excessive daytime sleepiness, hypnolepsy, sleeping disease, paroxysmal sleep, and Gelineau syndrome.

The fact is that those with Narcolepsy usually are much better at gauging when they’re tired or sleepy and pull over for a short nap, those without “normies” usually think that they can make it five minutes more, continue driving and get into accidents because of it.

Another thing we’re fighting against is the ones that say it’s a sleep disorder, even the Mayo clinic’s definition here says that. PWN and many Neurologists are trying to get these definitions to change it to say it’s a Neurological disorder that causes an often uncontrollable need to sleep. For a more accurate definition and description, without stupid remarks read this:

Here is the definition from Wikipedia, some folks don’t like Wikipedia because it’s done by “lay people” but I find it to be very accurate a lot of the time:

~~Narcolepsy /ˈnɑrkəˌlɛpsi/, also known as hypnolepsy, is a chronic neurological disorder caused by autoimmune destruction of hypocretin-producing neurons[1] inhibiting the brain’s ability to regulate sleep-wake cycles normally.[2]

People with narcolepsy experience frequent excessive daytime sleepiness, comparable to how non-narcoleptics feel after 24 to 48 hours of sleep deprivation,[3] as well as disturbed nocturnal sleep which often is confused with insomnia.

Narcoleptics generally experience the REM stage of sleep within 5 minutes of falling asleep, while non-narcoleptics do not experience REM in the first hour or so of a sleep cycle[4] until after a period of slow-wave sleep unless they are significantly sleep deprived.[5]

Another common symptom of narcolepsy is cataplexy, a sudden and transient episode of muscle weakness accompanied by full conscious awareness, typically (though not necessarily) triggered by emotions such as laughing, crying, terror, etc.[6] affecting roughly 70% of people who have narcolepsy.[7]

The term narcolepsy derives from the French word narcolepsie created by the French physician Jean-Baptiste-Édouard Gélineau by combining the Greek νάρκη (narkē, “numbness” or “stupor”),[8][9] and λῆψις (lepsis), “attack” or “seizure”.[10]

The simple version of all this is, we have a set of symptoms that happen in all of us. Those symptoms are: EDS, Excessive Daytime SleepinessCataplexy (with it’s own very confusing subset of symptoms).

Hallucinations which include but aren’t limited to Hypnogogic  which are as you are falling asleep and Hypnopompic which are as you are waking up, these hallucinations can include all the senses, touch, taste, smell, vision and hearing.

Sleep Paralysis, Microsleeps, Confusion, Social Anxiety, Anxiety, Panic attacks, Dreaming while you are awake, which occurs both with and without sleep paralysis. REM Behavior disorders, circadian rhythm disorders, paroxysmal sleep, Night Terrors, myoclonus (twitches and jerks while falling asleep) and last but not least, Orgasmolepsy.

There are other symptoms which pop up now and then but this should give you an idea of what to look for in both adults and children, I will be filling in more information as I get time such as what to do to get diagnosed and treatments that are available. Many of these symptoms are the same as people with Idiopathic Hypersomnia, except they don’t have Cataplexy.

There are some images that I will post links to which some find helpful that explain the parts of the brain that are affected. The first shows the location of the thalamus which links the brain to the endocrine system

The next is the Amygdala, the part of the brain that controls the difference in sexes: Then there is the Basil Gnglia, the part of the brain that is still left over from when we may have evolved from lizards:

Then, once you believe you have symptoms of Narcolepsy what should you do? Your first step will be to tell a doctor, most insurance plans want you to go to a GP, general practitioner, or FP, Family Practitioner first. Then you tell that doctor your symptoms and hopefully they understand and say you could have symptoms related to Narcolepsy.

If that doctor says something like sending you to see a psychiatrist, pulmonologist or anything other than a sleep specialist or neurologist, maybe you can mutter something like you’ve heard that those doctors aren’t as good as neurologists at figuring out what’s wrong and if that doesn’t work you can straight out tell them you want to see a neurologist.

Before you go to these tests your neurologist or ordering doctor should tell you to stop all antidepressants for 10 days and all stimulants for 3 days. Check with them to make sure and if they don’t tell you this ask them why. Not being off of certain medications can invalidate the tests!

The tests used to determine you have narcolepsy include the polysomnogram (PSG), multiple sleep latency test (MSLT), Maintenance of Wakefulness Test (MWT) and more rarely a lumbar puncture (LP) to test for hypocretin (Orexin) around your spinal cord.

You should always get a copy to keep of your sleep study and make sure it includes the print out of your brain waves that tests for cataplexy. I ask people all the time if they got their copy and if it includes the brain waves, the answer I always get is, what brain waves?

There is no test that is 100% accurate 100% of the time. If you get five sleep studies done and one of them is positive then you have narcolepsy.

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