Hi, my name is Christa, and I have Narcolepsy, with (mild) cataplexy.
This is my attempt at a post on the 'educational side' of Narcolepsy. Those of you that do not have the luxury of having it, find it hard to understand it, I get that... since I still don't understand it! I think I’m starting to feel that REM kicking in, and no, I don’t mean those guys losing their religion in the corner.
Now, I know what you’re thinking, 'Deuce Bigalow', at least that’s exactly what I thought of when my neurologist told me I had Narcolepsy. ”There’s no way I have that.” I said to myself. Boy, was I wrong! Naturally, I started reading up on the subject. Since there are literally 2 books (both dating back to the stone age) I had to turn to the internet, mostly user forums, support groups and Wikipedia, I did in fact realize, ”I totally have that”, as I kept checking off symptom after symptom off the list. Then, my life flashed before my eyes, and it suddenly seemed to make so much more sense!
Much of you are as ‘in the dark’ to Narcolepsy as I was, so 'I' will ‘school you’ in the matter a little.
This is my attempt at a post on the 'educational side' of Narcolepsy. Those of you that do not have the luxury of having it, find it hard to understand it, I get that... since I still don't understand it! I think I’m starting to feel that REM kicking in, and no, I don’t mean those guys losing their religion in the corner.
Now, I know what you’re thinking, 'Deuce Bigalow', at least that’s exactly what I thought of when my neurologist told me I had Narcolepsy. ”There’s no way I have that.” I said to myself. Boy, was I wrong! Naturally, I started reading up on the subject. Since there are literally 2 books (both dating back to the stone age) I had to turn to the internet, mostly user forums, support groups and Wikipedia, I did in fact realize, ”I totally have that”, as I kept checking off symptom after symptom off the list. Then, my life flashed before my eyes, and it suddenly seemed to make so much more sense!
Much of you are as ‘in the dark’ to Narcolepsy as I was, so 'I' will ‘school you’ in the matter a little.
I’m going to be totally bogus and copy and paste here, because as we all know, Narcoleptics are totally lazy people. I will get more personal into my experiences throughout our journey, this is just my first entry, so we'll keep it simple, I don't want to give it all up too soon. I am a lady!
Narcolepsy is a chronic brain disorder that involves poor control of sleep-wake cycles. People with narcolepsy experience periods of extreme daytime sleepiness and sudden, irresistible bouts of sleep that can strike at any time. These “sleep attacks” usually last a few seconds to several minutes.
Yes, I would fall asleep doing funny things a lot. Crocheting, Crushing Candy, (my husband says) in mid-conversation, reading, I could never sit through an entire movie (even in a theater) stop lights, standing in line for something (I would have to be SUPER narcoleptic for that to ever happen)
The ultimate instance which made me go get checked out, was when I was home alone with Brodie, my nearly 2 year old son: I fell asleep while he was playing. (several too many times probably) After he, far too early in life, learned to walk, my husband came home one day to him having locked himself in the bathroom.
(yes, mother of year award right here, I know. Don't worry, narcoleptic's don't like to sleep for more than 15 minutes tops, so Brodie was not locked in the bathroom for the afternoon)
I obviously knew this was a problem, and I was at my primary physicians office the next day, where she referred me to my neurologist/sleep doctor quickly. (for anyone that knows me, the fact that I actually admittedly said I needed to see a doctor was a battle won)
It took about 2 weeks for me to get an appointment with the neurologist/sleep doctor. Our first appointment was just the general first meeting, the asking of questions/symptoms and health/family history. He seemed concerned enough, so he ordered me up a sleep study! (Yay!)
You who have never had the pleasure of a sleep study, a well placed picture speaks volumes:
(Yes, the experience wasn't a pleasure, it wasn't as bad as I make it sound. I was able to sleep more comfortably than I thought I would, although, I just got done telling you that I could fall asleep standing in line at Wal-mart, so I might not be the best reference)
The ultimate instance which made me go get checked out, was when I was home alone with Brodie, my nearly 2 year old son: I fell asleep while he was playing. (several too many times probably) After he, far too early in life, learned to walk, my husband came home one day to him having locked himself in the bathroom.
(yes, mother of year award right here, I know. Don't worry, narcoleptic's don't like to sleep for more than 15 minutes tops, so Brodie was not locked in the bathroom for the afternoon)
I obviously knew this was a problem, and I was at my primary physicians office the next day, where she referred me to my neurologist/sleep doctor quickly. (for anyone that knows me, the fact that I actually admittedly said I needed to see a doctor was a battle won)
It took about 2 weeks for me to get an appointment with the neurologist/sleep doctor. Our first appointment was just the general first meeting, the asking of questions/symptoms and health/family history. He seemed concerned enough, so he ordered me up a sleep study! (Yay!)
You who have never had the pleasure of a sleep study, a well placed picture speaks volumes:
- Yep, you get to sleep with all that fancy jewelry on! Not only did I get to sleep through the night like this, I also got to stay through the whole next day, until about 6pm. I had to take several naps throughout the day. I know how great that sounds, right? Naps all day! No, not so much. They make you take a nap every 2 hours, and let you sleep for about 15-20 minutes, and wake you up. This happens about 5-6 times throughout the day.
(Yes, the experience wasn't a pleasure, it wasn't as bad as I make it sound. I was able to sleep more comfortably than I thought I would, although, I just got done telling you that I could fall asleep standing in line at Wal-mart, so I might not be the best reference)
For most adults, a normal night’s sleep will last about 8 hours and is composed of four to six separate sleep cycles. A sleep cycle is defined by a segment of non-rapid eye movement (NREM) sleep followed by a period of rapid eye movement (REM) sleep. The NREM segment can be further divided into increasingly deeper stages of sleep according to the size and frequency of brain waves. REM sleep is accompanied by bursts of rapid eye movement along with sharply heightened brain activity and temporary paralysis of the muscles that control posture and body movement. When subjects are awakened, they report that they were “having a dream” more often if they had been in REM sleep than if they had been in NREM sleep. Transitions from NREM to REM sleep are controlled by interactions among groups of neurons (nerve cells) located in different parts of the brain. For normal sleepers a typical sleep cycle is about 100 to 110 minutes long, beginning with NREM sleep and transitioning to REM sleep after 80 to 100 minutes. People with narcolepsy frequently enter REM sleep within a few minutes of falling asleep.
Yeah, about that - if I ever did anything normal in my life, someone might need to make sure the world is not ending or the zombie's aren't taking over the earth.
During my day-time nap study, Or MLST (multiple latency sleep test) my brain went into REM sleep in 1 minute and 30 seconds. Yeah, I said 1.5 minutes! That's 90 seconds, ladies and gents! I call that, insanity at it's finest! A normal person takes 1 HOUR at minimum! I’m so not normal, we already knew this, but, damn... the pot just seems to get richer with age! You can only imagine the day dreams this girl has on the daily! When I was told to stop being such a day dreamer my whole life, I never realized that I should take it so literal!
During my day-time nap study, Or MLST (multiple latency sleep test) my brain went into REM sleep in 1 minute and 30 seconds. Yeah, I said 1.5 minutes! That's 90 seconds, ladies and gents! I call that, insanity at it's finest! A normal person takes 1 HOUR at minimum! I’m so not normal, we already knew this, but, damn... the pot just seems to get richer with age! You can only imagine the day dreams this girl has on the daily! When I was told to stop being such a day dreamer my whole life, I never realized that I should take it so literal!
So, what causes Narcolepsy you ask? (let the copying and the pasting ensue)
The cause of narcolepsy is not known; however, scientists have made progress toward identifying genes strongly associated with the disorder. These genes control the production of chemicals in the brain that may signal sleep and awake cycles. Some experts think narcolepsy may be due to a deficiency in the production of a chemical called hypocretin by the brain. In addition, researchers have discovered abnormalities in various parts of the brain involved in regulating REM sleep. These abnormalities apparently contribute to symptom development. According to experts, it is likely narcolepsy involves multiple factors that interact to cause neurological dysfunction and REM sleep disturbances.
Basically, what I get from anything that I have read, is this: Nobody knows what really causes it. It’s still considered a rare disease, and a medical mystery! Approximately, 200,000 americans have it, so I suppose a lab rat seems like a logical aspiration for me?
So, with all of this said, my course of treatment: Writing about my adventures in drug/nap therapy, while trying to keep symptoms under control. Since there is no cure, a major lifestyle change is a HUGE factor in everything 'Christa' these days. Cutting out processed, fatty and nasty foods is a great start for everything that ails me.
(I have gone organic, and I am short of being 50 lbs lighter than I was when I was diagnosed! Organic, not vegan, nor vegetarian. I need the blood of animals to survive folks)
Weight loss & Exercise = Healthy & Happy. Hopefully.
Understanding now why I’ve lacked motivation for so long, will help with all of those things.
While trying to put a fun spin into raising awareness of Narcolepsy, I also plan on letting you all in on some of my crazy awesome lucid dreams, the world hypnogogic phenomena, sleep paralysis and what cataplexy means to me! I’ve often thought I was on a train to mental town with most of these things, but now I think I’ll start to share them with you all, maybe embrace them, and understand them.
(I have gone organic, and I am short of being 50 lbs lighter than I was when I was diagnosed! Organic, not vegan, nor vegetarian. I need the blood of animals to survive folks)
Weight loss & Exercise = Healthy & Happy. Hopefully.
Understanding now why I’ve lacked motivation for so long, will help with all of those things.
While trying to put a fun spin into raising awareness of Narcolepsy, I also plan on letting you all in on some of my crazy awesome lucid dreams, the world hypnogogic phenomena, sleep paralysis and what cataplexy means to me! I’ve often thought I was on a train to mental town with most of these things, but now I think I’ll start to share them with you all, maybe embrace them, and understand them.
Now, if I can just get the following things figured out, I think I will have just about the perfect life: my bi-polar, my business (Vanity's Candy), having a (more than) terrible 2 year old (with what is appearing to be a sleep situation of his very own - may i add that we have nobody to help us with a break here and there), a husband with MS, a meager financial and living situation, blending families (which is a VERY difficult situation), cutting myself off from all toxic people in my life, trying to keep my marriage strong and support my husband on his creative ventures during all of said events. take a deep breath.
I am not alone in any this! God, I reallly do miss my blogging adventures!
Peace & Love to you, and you... and you! <3
*The only reference material used in the creation of this blog was wikipedia. Lame? Yes. The truth? Sadly. Enjoy your day.*
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