Narcolepsy - Anne

I have chronic Narcolepsy with Cataplexy.


People rely on subtle social cues to understand how to behave in certain situations, or they know how to listen between the lines of what others are saying in order to catch their drift. This requires an ability to pay attention and to maintain a certain presence of mind in all situations.  You have to be alert and aware of what is going on around you. Walking around through life in a sleepy haze, narcoleptics don't have this attentiveness. Often, narcoleptics are described as "clueless". They miss these social cues and accordingly behave in what appears to others to be an odd manner. They miss things that are intimated in what others say and respond inappropriately. Appearing sleepy or "zoned out", they are often dismissed as being stupid or on drugs or drunk.

Marriages, friendships and other relationships often can't survive this. All kinds of situations that require interacting with others suffer greatly.


How would you feel if when you start laughing your muscles are paralyzed and you end up on the ground, unable to move or talk?  You just have to lie there on the ground until it wears off and you can finally move and tell people I'm fine, you shouldn't have called an ambulance. An ambulance came and I had to explain that no I didn't need to go to the hospital.

It's a rare neurological autoimmune disease that prevents me from getting deep, restorative sleep. Instead, I am constantly in and out of REM sleep. Try going without sleep for 3 days straight. That's what it feels like. You would die sooner without sleep than you would without food. I am constantly sleep-deprived, which debilitates me, so I can no longer paint portraits.  Those require a focus I am no longer capable of, due to this disease. Narcolepsy causes ADHD, memory and executive functioning problems.


I also have cervical dystonia, myoclonus, vestibular migraines, light sensitivity, and ocular migraines. The problem with dystonia is it has some of the same triggers as cataplexy. I don't get paralyzed, but I can still end up on the ground because of the dystonia movements.  People think I'm having a seizure.



https://www.nicer.ngo/what-narcolepsy/


Narcolepsy is uncommon and misunderstood. Most people know what Cystic Fibrosis is even though CF is less common than narcolepsy. Most people understand how debilitating Multiple Sclerosis is yet most people don't understand that Narcolepsy is just as debilitating as MS and just as common. The general public values narcolepsy more as a punch line than as a real and rare disease. Inaccurate fictional comedic depictions of narcolepsy in the media have led most people to mistakenly believe that narcoleptics are people who suddenly fall asleep mid-sentence while remaining standing and then awaken suddenly and are clueless as to what just happened. Newly diagnosed adult narcoleptics often find their struggles are more likely to be viewed as anxious plagiarisms of "real" biological disorders than to be viewed as challenging problems caused by a serious chronic disease.




Hotel Narcolepsy Blogspot


Everything Narcolepsy


The NICER Foundation - What is Narcolepsy?


The AWAKEN survey: knowledge of narcolepsy among physicians and the general population.


Fact Sheet - AWAKEN Survey: Awareness and Knowledge of Narcolepsy


CSF histamine contents in narcolepsy, idiopathic hypersomnia and obstructive sleep apnea syndrome.


Diagnosing the Wrong Deficit


Cognitive deficits in narcolepsy


University of Maryland Medical Center – Narcolepsy


Hotel Narcolepsy Facebook Page


Avoid Sleepiness with Protein: New Science Shows Sugar Blocks Orexin Cells


A Physiologically Based Model of Orexinergic Stabilization of Sleep and Wake


Narcolepsy – What is it?


Hypothalamic dysfunction


Nicotinic Regulation of Energy Homeostasis


Can you die from sleep deprivation?


Crazy Narcolepsy Blog


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Hypothalamic dysfunction MedlinePlus Medical Encyclopedia


Narcolepsy a review of a common, life-long sleep disorder - PubMed Mobile


The Science of Narcolepsy


Natural Orexin Activator to Improve Wakefulness, Narcolepsy, Obstructive Sleep Apnea, Shift Work Sleep Disorder, OREXINAL®, Orexin-A


Narcolepsy study finds surprising increase in neurons that produce histamine




VIDEOS

What Is Narcolepsy - Explaining Everyday Symptoms


What Narcolepsy Really Looks Like


Truth about Narcolepsy - The Daily Edition featuring Julie Flygare, Narcolepsy Advocate


National Geographic - Narcolepsy - Dee Daud


This Girl Suffers From Narcolepsy And She Shows You What It's Like To Live With It



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