I am the .5%

27 Nov

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??

27 Responses to “I am the .5%”

  1. reallyjustgiggles November 27, 2011 at 11:32 pm #

    Emily, for you to lay yourself out there like that could not have been easy, I applaud you for being REAL!!
    I have dealt with several patients’ that have had this years ago when I worked in a sleep apnea lab, if you need to bounce questions off me, please feel free.

    God I love G+….. 🙂

    • emilysixxrants November 27, 2011 at 11:37 pm #

      Hah! That’s freaking awesome! I think I will definitely take you up on that offer, cause lord knows I do have a ton of questions. No longer insured, I never get to talk to my doctor anymore so it’s not easy.

      Thanks for taking the time to read my post! You rock! 🙂

  2. Miguel Cuellar November 28, 2011 at 12:00 am #

    If your looking for a colder climate, SF and Seattle are some good options 😉 My dad had/has sleep apnea I think. He went to the dr’s/sleep clinic and they observed him overnight and they said throughout the night he would sometimes stop breathing. He used to use some air machine that would go over his mouth/nostrils and would basically breathe air. He doesn’t use it anymore, so idk if that’s by choice or if he doesn’t need to anymore lol.

    • emilysixxrants November 28, 2011 at 5:50 pm #

      Thanks for the suggestions..I’ve considered both of those places, but still not entirely sure where I’ll end up.

      And yes, if your father stops breathing in his sleep, he definitely has sleep apnea. I haven’t heard of that breathing machine before, but then again, I haven’t looked as much into it as I should. Crazy stuff!

  3. Victor Carbonell November 28, 2011 at 12:16 am #

    Funny, I never knew this about you. I suffer from the same symptoms. Sadly, I think me living in Colorado may have made things worst for my breathing. I do breath better at night when I take a nasal spray medication. I’ve also recently developed an addiction to coffee which helps a lot but the crash can get intense.

    • emilysixxrants November 28, 2011 at 5:52 pm #

      Yeah Vic, this stuff wasn’t something I really talked much about until now. I didn’t know you suffered from the same. You should probably go see your doctor and give them a run down of your symptoms.

      One thing though, they always say that narcoleptics should stay away from caffeine. It actually makes you sleepier than if you’d take no stimulant at all.

    • Osa Wrange May 3, 2012 at 3:07 pm #

      Hi Victor!
      I went down the caffeine road for years… Not the greatest scenery down the road. Some is ok, but it makes you crazy acidic and messes with your adrenals and your sugar regulation- as you have already noticed. You might have it all under control and have all the support you need:), if not … Let me know, I’ll be happy to share what I know so far.

  4. Andrew Kaylor November 28, 2011 at 12:35 am #

    Gosh, I would be full of questions if you and I ever had a discussion on this topic in person. Pretty interesting stuff. The only similar behavior I may rarely experience that could even allow me to relate would be the rare night terror. Knowing I am unable to control my body (or even realizing I am dreaming and wanting to be awake, I am a lucid dreamer), I tend to scream as hard as I can (which really is just a groaning IRL)…until I wake myself and regain control of my body.

    I wouldn’t say I have ever experienced any of the other symptoms, so I just elaborated on the one I felt might be the closest to one of the things you experience.

    PS – I’m in the Miami area as well. I hope the weather is kinder towards you with the gradual lack of heat. 🙂

    • emilysixxrants November 28, 2011 at 5:58 pm #

      Hi Andrew, thanks for commenting 🙂

      Night terrors are horrible! I do get those too..I actually left out a bunch of other stuff that I get thanks to this stupid condition. I did not want to make the article any longer than it already was.

      Does your throat hurt once you’re up as if you actually did scream really loud? that used to happen to me a lot. It was like a cold burn, for days.

  5. JustiniForBreakfast November 28, 2011 at 1:11 am #

    Great post Em! I’ll share a story. When I was 18 I went under the knife for a mitral valve replacement, open heart surgery. If we’re ever at the beach you’ll notice a 9 inch scar running down the middle of my chest. The surgery went according to plan because of some great Docs and nurses at Philly’s Presbyterian hospital. Aside from a month and a half of recovery at home and some generic meds I take daily, the last 12 years of my life have been normal. I did all the same things my friends did. I’m unfit for military service but so was Captain America before he took the supersoldier serum and I’ll never play QB for the Giants(neither will anyone reading this). I still run and lift and attempt to do yoga. Coming into contact with my own mortality at an age when most kids think they’re invincible has given me a unique perspective on life.

    • emilysixxrants November 28, 2011 at 6:02 pm #

      Wow, I’d say! Thanks for sharing that with us. You really are very brave and I’m so happy that you’ve been able to recover so smoothly.

      My father underwent valve replacement surgery as well about 6 years ago. He was told he would have to do so again to replace that one within 10 years, so it’s getting close for him. Do you have to go through the same?

      • justiniforbreakfast November 29, 2011 at 8:48 pm #

        I sure hope I don’t have to go under the knife again But if I did I don’t think it would be easier but I don’t thing it would be any harder A positive mental attitude is essential, as in any tough situation I have the mechanical valve and don’t believe they need to be replaced unless there is an issue I know there are valves made from organic material as well If your dad ever wants to talk cardiology feel free to give him my phone number/email whatever, I’m always open to speak with a fellow “zipper club” member

  6. Kat November 28, 2011 at 2:17 am #

    Umm all this happens to me. Not often, but all of it basically happens to me on and off. Except the sleep apnea, that has never happened, to my knowledge.

    The only other differences are that I fight the feeling tooth and nails if I’m in a car and don’t trust the driver lol. Being a control freak interferes with this I guess. Also if I’m in the cold I get insomnia, I can’t sleep a wink if I’m too cold. But I do fall asleep instantly in a very hot room and wake up with a migraine.

    Everything else does happen to me, I thought I was just lazy or not eating properly.

    Other than that I have horrible migraines, I might even have a brain tumor. Since I don’t have insurance, I’ll never know. Oh and I think I’m allergic to MSG, heat, and wind. Yes, wind…I get a rash when I’m out in a very windy day or by the beach. That and of course a migraine.

    We all have our weaknesses. 😀

    • emilysixxrants November 28, 2011 at 6:05 pm #

      Wow, a wind allergy?? I’ve never heard of that before.

      I really hate the fact that so many people are without health insurance. We really should all be able to get these things checked out when we need to.

      I really hope you’re able to look into your migraines soon. Talks of tumors is quite scary.

  7. theAntiELVIS November 28, 2011 at 3:34 am #

    >>but I feel like the all-natural route is always better<<

    Sometimes it is and sometimes it isn't. It's definitely an option to try, but try the non-natural route as well so you can really compare them. I tried the natural route with diabetes and it wasn't nearly as effective as just taking the big Metaformin pills every day.

    I have some of your symptoms but from other causes. Apnea sucks, and unfortunately right now it's one of those "trendy illnesses" that sells a lot of stuff, so it is over-diagnosed and definitely more expensive to diagnose and treat than it should be. The only real approaches to treating it are all machine-based, and sleeping hooked-up to the machine is about as annoying as apnea.

    Everyone gets some kind of deal in life – for me it's Meniere's Disease (extreme tinnitus and vertigo with hearing loss), diabetes, and misaligned vertebrae. For you it's having to deal with narcolepsy. Every time I see someone who really has to fight through every day in a wheelchair, against extreme behavioral or learning disabilities, or the onset of highly destructive disease like cancer, I feel a bit blessed to just have to listen to noise and have headaches, feel dizzy, tired and physically weak, and have some pain in my back and legs. Because I can still walk, I can still think, and if I take care of myself I'll still live for quite a while.

    So you're doing pretty good – and you're cute as a button in the bargain. That's something that completely passed me by. Dance, sing, and be happy.

    • emilysixxrants November 28, 2011 at 6:14 pm #

      I think when it comes to Diabetes vs. Narcolepsy, Diabetes wins in regards to the need for medication. Unfortunately that is just something that calls for medication and cannot be played with.

      As for comparing the two…I really don’t think I want to go there. I’ve been able to control it a lot more lately just by changing my diet and living a more healthy lifestyle, and of course, sticking to my guns.

      In the past I’ve taken meds for anti-anxiety (also related to narcolepsy) and it was not pleasant. And as I’ve gotten older, any kind of stimulant meds give me heart palpitations so yeah…I’ll pass.

      Regarding what you said, comparing your conditions to the other more horrible ones out there, I feel exactly the same way. I’m not upset about this at all…Never shed a tear about it either because I know that I got off easy. I know so many people with so many different conditions and diseases and I am definitely fortunate to not have to deal with a worse burden. I’m definitely glad you see things this way.

      And thank you so much for the compliment 🙂

  8. Big Sauce Radio (@bigsauceradio) November 28, 2011 at 9:39 am #

    Would excessive masturbation qualify as a disease?

    • emilysixxrants November 28, 2011 at 6:20 pm #

      I don’t know about it being labeled as a disease, but compulsive masturbation is indeed an emotional issue and you should definitely address this with your mental health specialist.

  9. nikkix2 November 28, 2011 at 11:01 am #

    Awesome post!!
    I have been thinking about blogging about my anxiety and depression disorder that I have, would you mind if I added a link to your article?

  10. Angie Montalvo (@geekymommy2019) November 28, 2011 at 5:48 pm #

    Wow! That’s crazy. I’m glad you’re handling it well, though. And knowing what it is helps you realize the symptoms when they’re happening a bit more.

    I’ve got all sorts of issues.

    I’m bipolar and have severe anxiety. Both are BAD. I have to take medication. I don’t have a choice. I just got diagnosed about 2 years ago after, well, pretty much a mental breakdown.

    I have a permanent back injury. Sacroiliitis and a pinched nerve. It’s fun. :/

    I’m also pretty sure I have some sort of sleep disorder. I’m pretty sure mine is just insomnia, though. Pretty sure my daytime sleepiness is due to lack of nighttime sleep.

    *sigh* I’m all sorts of fucked up. 😛

  11. champalover November 29, 2011 at 9:44 pm #

    I was aware of this issue you have and I give you a high five for sharing it with the net world.
    As crazy as I am and try to make sure that I keep a smile on my face, my insides are corroded. At the age of 30 (those good old thirties that I looked forward to) I was diagnosed with a mild case of scoliosis and then I was slammed with hyperprolactinemia. It was discovered that I did have an itsy bitsy tumor in my pituitary gland and thankfully it was treated with meds. Having no sex drive is not cool at all and that is what that did to me. It is all back now but that was a scary time in my life. LOL. A tad over a year ago I was diagnosed with diabetes II and hypothyroidism. That explained LOTS of symptoms I was experiencing including weight gain and hair loss. The latest thing I am experiencing is neuropathy. THIS ONE I HATE! Why? Simply because when it occurs, I feel as if a bug bit me. Living where I live now, it scares the crap out of me because there are so many critters around here.
    I can get rid of the diabetes, but it has not been easy in attempting to lose weight. One pill helps me but the other makes it difficult so I am stuck in the middle of weight loss hell. I am embarrassed at times with my semi-patchy hair and my weight, but I am so very thankful that my issue is not as bad as the issues many others have to deal with.
    I hope that it all gets better for you!

  12. Dan November 30, 2011 at 6:21 pm #

    Really good article, Emily! Thanks for sharing that!

    • Unrelenting Amee December 1, 2011 at 1:55 am #

      Brava, Sixx.

      This is your best post so far– and I love that you did it because your circulation has grown and you feel more secure with your blogging. I’m amazed that you’re functioning so well with all this, wow!

      Your positive attitude is refreshing and proves that we don’t have to be debilitated by our health, even with random and severe symptoms like some of yours. I’ve considered blogging about some things I deal with, but don’t feel brave enough just yet.

      I do feel inspired by you though– and will do it at the right time. I’m sure your post is going to give a lot of people tremendous relief, to see that a successful, gorgeous woman like yourself manages her symptoms but doesn’t let them define her. 🙂

  13. Dean Santoro December 7, 2011 at 9:47 am #

    Enter the Big Sauce Radio Fan Contest and you could win some awesome prizes!
    http://www.examiner.com/comedy-scene-in-boston/enter-the-big-sauce-radio-fan-contest

  14. Osa Wrange May 3, 2012 at 2:55 pm #

    Hi Emily!

    It is rather amusing reading stories so similar to mine, except my struggle to figure out what was wrong, took so many years. I was in chiropractic school (all teachers were Drs!!!) they all thought I was this cocaine using party girl, who didn’t really care about school. As I often couldn’t find my glasses, I ended up grabbing my sunglasses – better try to get some notes from the board during the few awake moments I might have per class. Many of my teachers didn’t even try to hide their dismay. After exploring everything between A-Z including depression, laziness and thyroid problems – my boyfriend finally figured it out.

    By natural means, I was able to be drug free for many years, but after increased stress and trauma from a rear-end collision, I am back on meds. Temporarily…I hope.
    One can really manage a lot of the symptoms by being on an anti inflammatory diet, but keeping stress to a minimum is key.
    When I found your blog, I have just been contemplating how to share “the 5% dilemma”
    on Match.com. When and how? Any suggestions?

    Sincerely,

    Osa

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  1. Anxiety and Depression,,oh I know you so well…. « Just Another Canadian Gurl - November 28, 2011

    […] I am the, 5% […]

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