I am the .5%

Now that my blog has been up and running for a while and has a substantial amount of visits and followers, I figured it was time to let you all in on a little secret of mine. I mean, who would want to expose such interesting cheese if no one is around to read it? Ok, well, it’s not really a secret, but it’s not something I usually go shouting out from the rooftops. It’s something personal, debilitating, and just all-around annoying.

After many years of struggling with crazy symptoms and having no idea they had any relation to each other, I did my research and consulted with my doctor and guess what? I have a classic case of Narcolepsy! Exciting isn’t it?! No, not in the least!

Before I get into my personal experience and struggle with narcolepsy, I will explain to you what narcolepsy really is. I don’t expect you all to be too knowledgeable of this condition if you don’t suffer from it, and being that only about .5% of the population gets diagnosed, the chances that anyone would truly understand are very slim.

Narcolepsy is a neurological disorder that affects the control of sleep and wakefulness. Those with narcolepsy experience excessive daytime sleepiness (EDS). This means that you can fall asleep at any given moment, at any given time, for any given reason. In most cases, symptoms start to develop between the ages of 15 and 25, 25 being the age where narcolepsy hits the hardest. But like everything else in this world, narcolepsy does have its exceptions and can definitely start sooner or later on in life.

Common symptoms of narcolepsy:

Cataplexy – A sudden loss of muscle tone that leads to feelings of weakness and loss of voluntary muscle control. Symptoms can range from slurred speech to total body collapse. These attacks can last anywhere from a few seconds to several minutes.

Sleep Paralysis – The temporary inability to move or speak while falling asleep or waking up. This too can last anywhere from a few seconds to several minutes.

Hallucinations – Vivid and frequently frightening visions accompanying the onset of sleep (Hypnagogic) and also occurring during awakening (Hypnopompic). These hallucinations may not only be visual; any of the other senses can be involved.

Microsleep – Automatic behavior without conscious awareness. For example, driving or walking competently but ending up in a different location than was intended or not recalling the trip from point A to point B.

The list goes on, but those are all the most common symptoms of narcolepsy. Cases vary from person to person; Some individuals will fall asleep uncontrollably at any moment and can most definitely hurt themselves in the process while others are able to control these attacks and fight through it.

My personal experience has been an interesting one, to say the least. I started experiencing Hypnagogic hallucinations as a kid. I never gave it much thought because I knew what I was seeing wasn’t real. I just figured I had a crazy imagination and never really told anyone about it.

At the age of 15 I experienced my first Sleep Paralysis episode. I remember opening my eyes and trying to sit up on my bed, only I couldn’t move. I tried and I tried, but no matter how much effort I put into it, my body was frozen; I was paralyzed. I also had the inability to speak. It was one of the scariest moments of my life.

One trigger that didn’t seem that important to me while growing up is my difficulty reading. As much as I love writing, reading was always a burden for me; I could never stay awake while trying to read. It’s an instant sedative for me. I literally pass out two pages into a book and sometimes struggle to read long articles. I used to have to take Xenadrine back in high school so that I could stay awake during important tests. I always managed to have amazing grades, but it did not come easy.

Another trigger that sets me into a state of uncontrollable sleepiness is temperature. Even though I like to sleep in the cold, under a nice thick comforter, stepping into a steaming hot car can knock me out in an instant. Same thing would happen to me in when I’d go to the Sauna at the gym. I can’t explain it! Something about the heat makes me so incredibly sleepy. Maybe that’s why I’m not so fond of Miami and would do anything to move away to a colder climate.

Eating a big meal is also a tough one to deal with. After every meal I do get a little wave of tiredness, but when it’s a large meal the sleepiness is insatiable. I remember when I used to bartend full time, if I ate heavy right before a shift I would literally fall asleep standing up against the bar, on a busy night with music blasting at ungodly levels..It was bad. And the worst part was that my coworkers just thought I was an asshole for being sleepy and exhausted all the time.

Probably the most dangerous trigger of them all for me is driving and car rides. It started off as me being the worst co-pilot ever, to little by little not being able to drive at all at night. I can literally be talking to my passenger and fall asleep with my eyes open and talking somewhat coherently. I’ve been very lucky to not have caused an accident in this state, but I have had several close calls and eaten plenty-a-median. I’ve also fallen asleep in my car before even starting it…it’s crazy. I know!

I think the symptom I have the least issue with is Cataplexy, which is basically sleep paralysis while awake. I have indeed had a really strong Cataplexy attack once, but it only ever happened to me that one time, two years ago so I don’t think it’s a symptom I have to worry too much about.

The scariest thing I experience now and have been dealing with for a good 5 years is Sleep Apnea mixed in with Sleep Paralysis. If you don’t know what Sleep Apnea is, it’s when your body starts breathing irregularly in your sleep and sometimes stops breathing all together. It’s usually not really noticeable, but of course I always fall within that special percentile of the population that’s a twisted exception and gets it hardcore. So, in a nutshell, I will wake up from a deep sleep, be totally paralyzed and not be able to breathe. Now THAT is a nightmare!

I do also experience episodes of Microsleep, mostly while driving during the day where I can will lose chunks of my trip. I will literally be driving somewhere and be like, “How did I get here? I don’t remember.” That too can be extremely dangerous because I’m basically driving on Zombie Mode.

But alas, I can say that my battle with Narcolepsy is not one that I’m losing. It’s intensity comes and goes in waves and it all depend on my all-around health, stress levels and ability to get a good night’s sleep. Right now I can safely say that I’m not going through a tough phase. Though it’s still something I struggle with on a daily basis, it’s not as uncontrollable as it used to be and I will credit that to my new healthy diet and exercise routine. There are a lot of treatments and meds I could try to help me out as well, but I feel like the all-natural route is always better.

So now you’re in on my little secret. How about you share one with me? Do you have any uncommon conditions you don’t mind sharing? Do any of you happen to suffer from narcolepsy as well??