Viral Narcolepsy with Cataplexy Video

by julie on October 22, 2014

A video of a young woman with narcolepsy and cataplexy has gone viral. Watch below or on YouTube.

This is a powerful video and I am grateful to Sarah Elizabeth for bravely sharing her experience!

Sarah Elizabeth is primarily experiencing a narcolepsy symptom called cataplexy here.
  • Cataplexy is a sudden loss of muscle tone, resulting in knee buckle or collapse, while remaining conscious, often accompanied by emotions like laughter, annoyance or surprise. Cataplexy is the paralysis of REM/dream sleep experienced inappropriate while awake.
  • Sleep attack/excessive sleepiness is an overwhelming urge to sleep during the day. 

Since Sarah Elizabeth was tired when she recorded this, the pressure toward REM/dream sleep may have been so strong that she experienced cataplexy and sleepiness together. I have experienced this. And cataplexy can lead to full sleep – moving from consciousness to unconsciousness and the feeling of “waking up” afterward.  

What is cataplexy?

The difference between narcolepsy’s sleepiness and cataplexy:

Why is this distinction important?

In my awareness efforts, I distinguish between excessive sleepiness and cataplexy, as I believe the sleepiness of narcolepsy is much more pervasive and invisible than public perceptions, and cataplexy is the instant dropping or collapsing while conscious. As a person who went years undiagnosed, I never thought I had “narcolepsy” because I didn’t fall asleep standing, and my knee buckling/collapsing didn’t feel anything like sleep.

What does cataplexy feel like?

“The weakness moved through me in waves. My neck let go and my head swung around like a tetherball.

I certainly wasn’t laughing anymore, as I lay like a haphazard stack of bones on the floor, unable to speak or move.  Inside this lifeless body, my mind remained steady and clear, aware of my surroundings and taking in my fall all around me.  I could feel my strange position, and although I didn’t like it, I simply couldn’t do anything about it. 

narcolepsy cataplexyI remained on the floor for about 30 seconds, experiencing my existence through my mind’s eye alone as each second passed slowly. I was completely unsure of my physical self and where it stacked up in the bigger game of life. 

I’m interested in hearing your thoughts. Thanks again to Sarah Elizabeth for starting such a great dialogue around narcolepsy and cataplexy. I hope we can continue opening hearts and minds to the real narcolepsy together.

{ 4 comments… read them below or add one }

Lennis Sadler October 22, 2014 at 3:24 am

Hi Julie,

My daughter (11 years old) was diagnosed with Narcolepsy two years ago. We did not realized that she had cataplexy until we saw Dr. Mignot and he told us that hers was present in a loss of muscle control in her mouth. When she gets too excited, angry or sad, her mouth droops and her tongue seems heavy to her. She starts talking as if her tongue was asleep, making it difficult to understand her. She is now taking Xyrem and her cataplexy, although still present, does not happen as often as it did before the medication. I had always heard that cataplexy caused people to fall or lose control of limbs, so I was surprised to hear that it could manifest itself in different ways.
Thank you so much for everything you are doing to help all of us out here who either suffer or have a love one suffering from Narcolepsy. You are an awesome asset to all of us! Keep up the great work!

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Phillip Satkowski October 23, 2014 at 4:17 am

Hello Julie and Lennis,
I have been following your blog for a while and after reading your book I bought the kindle edition for my two sisters and for my mother so that they could understand what I experience. I am 32 years old and also epileptic as well as narcoleptic with cataplexy. For a very long time I had the symptoms confused, especially cataplexy and sleep paralysis and what occurs before I have a tonic-clonic seizure, which is often referred to as an aura. My neurologist finally asked me one day to describe any other symptoms of my epilepsy and I had finally built up enough guts to describe to him what happens when I am paralyzed in bed or when I slump over in my chair and fall on my floor while listening to music or watching a movie. He gave me a multi sleep latency test and my results were the same as what you described in your book; all five naps I went straight into REM within 30 seconds or so, and right up until they woke me up.
The way that cataplexy effects me is slightly different then what most people describe I think however. The effect is the same, I lose all ability to hold my head and shoulders up, I notice that, and then generally the next thing I notice is that I have fallen to the floor. It generally happens to me at night, only a few times has it happened during the day when I am around other people, and it always happens when I get very excited, particularly when listening to my favorite band or when watching a video of them. The few times that it did occur while I didn’t have the time to get into a chair or something however, I did fall and split either my head, or my tongue, and only once did it lead straight into a seizure; or relatively quickly into a seizure. I also take xyrem, and have noticed a big decrease in cataplexy as well as sleep paralysis, which I have to say I suffered from more than anything, I would even take seizures over sleep paralysis. The medication has helped a lot, however anti-epilepsy medication makes me groggy and it is difficult to keep up a good sleep pattern, while at the same time I can’t take very many stimulants because of the seizure risk. That is all, I thought that I should finally post and let you and Sarah Elizabeth and anybody else who helps make narcolepsy more publicly known, know how much I appreciate it. I could only fail at trying to explain to my immediate family the seriousness of narcolepsy, especially when they had other things like epilepsy as well as other serious health issues of mine to focus on. I would never have got everyone to understand that narcolepsy is a serious health concern if it wasn’t for your memoir.
Phillip Satkowski

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Bart McNeely October 22, 2014 at 2:11 pm

I started the knee buckling in 2005. I was diagnosed in 2007. I began discussing the possibility of going on disability last year with my doctor. I started collecting affidavits from folks who’ve seen me fall to the ground. I started documenting the dates and severity. Since it is so hard to describe in words, and since it is intermittent, I set my iPhone on record in the shopping cart at Kroger while I pushed it around in the event something did happen. I’ve had a real increase in severity but it’s not enough to stop me from going places and doing things. As a person with a high musical aptitude (particularly with rhythm) whenever I keep the beat I don’t fall. In fact I sing background vocals first Fridays of the month at our church’s Messianic Jewish service. So… There I am on the platform jumping up and down in front of over 2,000 people during our very lively worship set. But at nine o’clock in the foyer with the throngs of people I’m walking to my car with a cane and hitting or nearly hitting the ground every five steps… Until I start marching, dancing….. In short I can be a real SPECTACLE if observed as I fall, march, kick my cane with my right foot, walk stumble, run, skip, walk ‘normally’ and fall, walk, fall, walk…..run. My families life these past ten months would have made a fascinating reality show.

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Michael Hennessey October 24, 2014 at 5:41 am

I would guess if Sarah Elizabeth showed this video to some people they would think it was an act.

I am 65 and can trace Narcolepsy back to grade school. I was not diagnosed until my 40’s after a major auto accident. I have had all of the symptoms over the years. But not all of the symptoms at once.

I have had people leave my home because I fell asleep in conversation which made them mad. People thought they saw me drunk on the street when I was trying to walk home. My parents always joked about my ability to sleep anytime, anywhere except at night.

Great saying are, “all you have to do is focus” , ” you have so much waisted potential” , ” everyone misses sections of the road occasionally ” ” He is just accident pron” and my favorite ” if you only had more faith GOD would heal you”

I love Sarah and Judy for going public with something so emotionally embarrassing.
Michael
PS: A lot of fun things along the way. I ran into the only tree in the yard while mowing the Lawn(sleep Attack). Walked off a friend’s roof while roofing and talking.

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