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Tuesday, June 19, 2012

An Excessive Sleeping Disorder Called Narcolepsy

An Excessive Sleeping Disorder Called Narcolepsy

Narcolepsy (NAR-ko-lep-se)
 is a disorder that causes periods of extreme daytime sleepiness.

Many people like myself know all to well what it's like to have extreme sleepiness different times throughout the day. The sleep attacks can come on at any moment at any given time. I notice my sleepiness hits especially when I'm feeling sad or I'm laughing. As strange as it sounds narcoleptics feel the tiredness come on more when they show/feel any emotion.

 As a narcoleptic my life is so much different then everyone else in my family. Alot of people don't understand this disorder, I get so frustrated when all I want to do is sleep and I get frowns and comments when I'm to weak and sleepy to participate in family activities such as cookouts, birthday parties, get-togethers and the different events that take place where I should be attending. I can honestly say my kids understand and respect the fact that I can't always be awake. It's some of my friends and relatives who can give me a hard time.
Through the years I have read many different forums and posts on the Internet and I notice alot of people with narcolepsy also has trouble with others around them understanding this. I find often people have the misconception that narcoleptics are just "lazy" like as if we have control over our disorder. I just have to remind myself that many people don't understand and just won't except it.

Growing up I was in and out of counseling being told I have depression and being handed a prescription to treat depression because I'd explain about how I was always tired and lacked social activities. It would just be passed as if I would take a pill I would feel better, I knew it had to be something other then depression. I knew the medicine wasn't making anything better and over the years I have tried out many different medications. Finally when I reached the age 24 I knew I had to figure out what was going on. At that time I started doing research on the Internet, I read articles on sleepiness and looked up symptoms others had like me. I went to my Dr. and explained to him about the Narcolepsy articles and showed him what I read. He sent me for a sleep study and that's when I was diagnosed with Narcolepsy. Needless to say I still have take medicine throughout the day to help me stay awake. Medicine won't take the sleepiness away completely but it does help be more comfortable. I'm now awake more through the day and a little more active. I do have my days where I will have to sleep all day.  

It can be hard at times because those who don't know or understand this disorder can be so cruel, not intentionally but it does happen. Not knowing they will laugh or crack jokes. Narcolepsy is not a laughing matter.


I decided to write this post to hopefully spread the word to help people become more aware and understanding to this disorder. I often remind myself about how many more people in this world suffer with much harder disorders, some can't even walk, some people can't talk, there's people with missing arms or legs or has medical conditions that are so painful for them to even enjoy life. I don't feel sorry for myself, I just have a hard time sometimes excepting that I have narcolepsy.

With no cure for Narcolepsy, the disorder usually begins in young adulthood and lasts for the rest of the sufferer’s life. The disorder also may cause muscle weakness. Some people who have the disorder fall asleep suddenly, even if they're in the middle of talking, eating, or another activity.
Narcolepsy is a chronic neurological disorder caused by the brain's inability to regulate sleep-wake cycles normally. At various times throughout the day, people with narcolepsy experience irresistible bouts of sleep. If the urge becomes overwhelming, individuals will fall asleep for periods lasting from a few seconds to several minutes. In rare cases, some people may remain asleep for an hour or longer. Some people who have the disorder fall asleep suddenly, even if they're in the middle of talking, eating, or another activity. In addition to excessive daytime sleepiness (EDS), three other major symptoms frequently characterize narcolepsy: cataplexy, or the sudden loss of voluntary muscle tone; vivid hallucinations during sleep onset or upon awakening; and brief episodes of total paralysis at the beginning or end of sleep.  Narcolepsy is not definitively diagnosed in most patients until 10 to 15 years after the first symptoms appear. The cause of narcolepsy remains unknown.  It is likely that narcolepsy involves multiple factors interacting to cause neurological dysfunction and sleep disturbances.
Narcolepsy has no cure, but medicines, lifestyle changes, and other therapies can improve symptoms.

Please feel free to comment below with any suggestions or questions. I'd really love to know how you feel and what you think.
*Please note that you don't have to share that you have or don't have narcolepsy, it's entirely up to you. Please still feel free to comment*

6 comments:

Leah Baird said...

I was entering a giveaway and the link went here instead of the facebook page. I have narcolepsy and am very controlled with medication. But understand completely that most people don't get it. I still get very sleepy, although It was a God send to get on a medication, that helps me get the correct sleep at bedtime. I used to have catalepxy like 30-40 times a day. And now it is very rare that I fall to the floor, from laughter, like I used to. I was lucky to get diagnosed when I was pretty new to having the symptoms. I'm only 20 years old, and am trying to do school, which I do very well. But limit myself to only so many classes.

Kitseyboo said...

This is a very interesting post. I have a sister that has many sleep disorders. She wears a sleep mask and everything. I feel for you. God Bless you and a little prayer for you.

Shannon's Tales of Motherhood said...

@Leah Baird,

It is good your in school! I couldn't imagine anyone having catalepxy 30-40 times in one day, I'm happy to hear you don't have to worry about falling anymore. Your so young and so focused to live life even with your narcolepsy and I applaued you for that. I admit sometimes I allow it to get the best of me. When I read encouraging comments like yours it helps me to get back on track! Good luck with your studies!

Shannon's Tales of Motherhood said...

@Kitseyboo,

I to have to wear a c-pap mask at night but it helps a great deal. Sorry to hear that your sister has sleep disorders. As long as you continue to understand what she is going through and be there when she needs you, it will help alot for her..many people judge and it makes matters worse. You seem like such a caring and understanding person and if everyone was like you the world would be a better place... thanks for your prayer and God bless you as well..:)

Laura said...

I've often wondered if I'm slightly narcoleptic, since I am usually tired, can fall asleep anywhere at anytime, and have been diagnosed with depression since I was very young. After reading this, though, I'm thinking it's probably something else. Sigh... maybe someday I'll get it figured out! Thank you; it helped to read a firsthand account of what it's really like to be narcoleptic.

Shannon's Tales of Motherhood said...

Laura,
I hope you go get checked out for narcolepsy because it's so much different when you know the correct diagnose so you can get the right treatment. Good luck to you and I hope things get easier for you.

Thanks