Let’s talk about sleep baby. Let’s talk about my bed and me. Let’s talk about all the bad things associated with nar-co-lep-sy. Let’s talk abooouuut sleeeep.
Okay, now that that is out of my system, let’s talk about something kind of serious. Yes, you guessed it – I have the sleep disorder known as Narcolepsy. What it is exactly?
Narcolepsy is a neurological sleep disorder caused by the brain’s inability to regulate sleep and wake cycles normally. Typically, Narcoleptics have a “broken” REM (Rapid Eye Movement) sleep which they experience about 5 minutes into their sleep. Many people experience their REM sleep an hour or so into sleeping and get a deeper, longer sleeping experience.
The main characteristic of narcolepsy is Excessive Daytime Sleepiness (EDS), even after getting what most would consider to be an adequate amount of nighttime sleep. A person with this disorder is likely to “nod off” briefly or even fall asleep several times a day – often at inappropriate places and times.
Okay, so for me it isn’t as bad as when Mr. Bean falls asleep during the movie Rat Race. I don’t fall asleep standing up. But mid conversation? During a meal? In a noisy area? At work? Outside? At my desk? In a movie theater? Absolutely!
And it’s embarrassing.
[gdlr_video url=”http://youtu.be/2MJX6XQUYA4″ ]
I have good weeks and bad. There’s no real rhyme nor reason to it. Sometimes, a little something just throws me off and other times, it doesn’t. Maybe my work schedule changed a bit or perhaps I am stressing over something. Recently, the physical trauma of getting my first tattoo has me far more thrown off than I realized it could make me. And the worst part of it all is that the EDS is the least of my worries. There are actually 4 other classic symptoms of Narcolepsy and I happen to have them all.
Cataplexy is a sudden loss in muscle tone often triggered by emotions such as laughing, crying, terror, etc. The exact cause of cataplexy is unknown, but the condition is strongly linked to experiencing intense emotions and reduced levels of the neurochemical hypocretin. It’s more embarrassing for me than the falling asleep in public. I attribute that to the fact that I am a bigger girl and I fear people think I am fainting due to being overweight and over exerted. I assure you – that is 100% NOT the cause of my issues.
First, I want to show you what Narcolepsy and Cataplexy look like. While my condition isn’t quite this severe as I do not fall asleep standing up, this is a prime example of the disorder. In particular, her issues with Cataplexy mimic my own.
[gdlr_video url=”http://youtu.be/1PuvXpv0yDM” ]
I break up my own experience with the fainting episodes into 3 different categories as described below:
The “Cutting Myself Some Slack”: The facial muscles will go slack and/or I will experience a full head bob. I interpret this as my body telling me to not push my luck and as a warning that I’m more tired than I think I am. As a personal note, this tends to happen most often during “highs” – where my body is running on a lot of adrenaline rather than sleep. I can typically regain control of my body quickly through breathing and concentration techniques that I have found work for me. You may not even notice it happened. I think I’ve gotten pretty good at hiding it.
The “Almost Faint”: The most unpredictable of episodes for me (by that I mean, I haven’t figured out what emotion or situation is really causing it). It all starts off the same – the muscles in my face will go slack and my head will have a sort of cloudy feeling. That’s when my arm and muscles will feel sort of numb and heavy as they lose strength. I call this one the Almost Faint because in this scenario, I manage to grab hold onto something in order to prevent a full collapse. My upper body strength always returns first and by hanging onto something – a shelf, a person… I am able to steady myself until the episode passes and I regain control.
The “I’ve Fallen and Can’t Get Up”: I’m a walking Life Alert commercial. This is the thankfully the most rare of my scenarios having occurred only 6 times since I was diagnosed about 7 years ago. A full-blow attack like this one is often mistaken as a stroke – it looks similar. It starts just as the others with the facial slack, the loss of muscle tone. The difference for me personally is my slurred speech and blurry vision. My brain while completely aware, struggles to understand the world around me because it’s too busy trying to figure out how to prevent me from falling and injuring myself. That’s the goal… when I know I’m going down, figure out how to do it with the least possible injury. Fortunately, the fall is slow and progressive and now that I know the first several seconds of the episode, I can prepare for the fall by quickly assessing my surroundings. So far, I’ve managed to sit down “Indian Style” or fall sideways to avoid hitting furniture.
Cataplexy scares me more than any other symptom I have. It’s the biggest reason I have accepted that I cannot live alone – in fear that I will fall, get hurt and there will be no one there to check on me.
This short, 2-minute video explains it really well.
[gdlr_video url=”http://youtu.be/AOA1bJH_d9s” ]
This phenomenon (because seriously, that’s what it is) is basically the feeling of transitioning into sleep – being sort of half awake. It’s very common for Narcoleptics because of our erratic REM pattern. It’s what causes our vivid, intense and often odd dreams. As a personal note, I once dreamed about a dream and got “stuck” there. I felt like my body was actually present in the second dream and I had to tell myself to go to sleep and dream about the first dream in order to return. Trippy? Yup. And exhausting!
Have you seen the movie Inception? Yeah, well I’m pretty sure that movie was written about me, for me.
This one is different for everyone. What the Narcoleptic does is completely their own. An Automatic Behavior is the spontaneous production of often purposeless verbal or motor behavior without conscious self-control or self-censorship. As an example, sleep walking is an automatic behavior. Personally, I often respond in my sleep to questions without recollection of the conversation. Worse… I tend to get very angry and aggressive when this symptom mixes with the hallucinations. I become very aware that I am trying to sleep and I begin cursing and yelling at the offender – again, without recollection.
This used to happen much more often – particularly when I was in a stressful, abusive relationship. I can’t even remember the last time I had trouble with this one.
This is a phenomenon in which people (either when falling asleep or wakening) temporarily experience inability to move. It’s basically when the brain has woken up but hasn’t yet told your body. You’ll feel very heavy, like someone is holding you down. It is believed a result of disrupted REM sleep.
I have trouble with this one from time to time but not nearly as often as I used to.
Narcolepsy is a real thing and anyone can have it. It’s not really curable so much as there are ways to learn to cope with it. I sleep… a lot. I take a nap every day. I even have a travel pillow that I keep at work so I can nap for 20 minutes during my break. There are stimulants available but after researching and talking to others who have tried them, I prefer my “natural” method of dealing with it. I’ve heard far too many people tell me that the stimulant keeps them up at night and so they have to take a sleeping pill at night. I just don’t want to medicate myself that much for something I can mostly manage.
I have had this disorder for as long as I can remember – as far as childhood. I was diagnosed about 7 years ago and it helped me make big changes in my life. That said, I don’t have complete control over it and I nod off at work several times each week. I’m lucky that my employers understand that it’s not lack of responsibility – I wasn’t out partying all night or anything. I sincerely cannot stop it and yet I do everything I can to prevent it from happening.
I fell asleep often in school – from elementary through college. I got in trouble all the time for it – teachers calling my parents, complaining that I was falling asleep in class. My parents would send me to bed earlier and earlier every night, convinced that I must not be getting enough sleep. They were partially right. To this day, I don’t think I could go back to school. I wouldn’t be able to stay awake during lectures. I seriously doubt I will ever finish college.
Driving is dangerous. I can do it. There’s nothing that says I cannot drive, but I know me and I know I cannot do long trips in the car. I might make an hour drive without nodding off. The brain simply isn’t stimulated enough by driving because driving is like walking – it’s a triggered muscle memory and your body just sort of does it without much thought.
Narcolepsy is serious. Please encourage others not to joke about it. It isn’t funny. It’s a serious and very real condition. It affects mine and the lives of so many other people on an every day basis. Spread awareness and learn more about this life-altering disorder. Educate yourself and others!
Do you have or know someone with Narcolepsy? How has this affected your life?