I Have Narcolepsy, LOL

Hi nice to meet you, I have Narcolepsy LOL.  I can't help but giggle every time that I tell someone that I do indeed have Narcolepsy.  It's really not a laughing matter. However, I can not get offended when people laugh at me when I tell them.  It's not their fault, they don't know any better.  Portrayals of narcoleptics in the movies are inaccurate to say the least.  So it is up to us (the narcolepsy community, friends and relatives) to help spread the word and increase awareness.  By educating and informing, hopefully individuals will receive proper diagnosis within months instead of years, as is currently the norm.

Now for a little education.
Narcolepsy: Chronic neurological disorder caused by the brain's inability to regulate sleep-wake cycles normally.  (National Institutes of Health- U.S. Dept. of Health and Human Services, brochure titled Narcolepsy. The following symptoms are paraphrased from said source as well.)

Symptoms:
EDS: Excessive Daytime Sleepiness
Cataplexy: Sudden loss of muscle tone commonly triggered by a sudden surge of emotion such as anger, fear, excitement, humiliation, and laughter. Individual is completely conscious even though they may appear to have "passed out". (My personal favorite)
Sleep Paralysis: Upon waking or falling asleep, temporary inability to move or speak. As with cataplexy, individual is completely conscious.
Hallucinations: Can occur with sleep paralysis or by itself upon waking or falling asleep. Vivid, delusional experiences that are mostly visual, but may also involve the other senses. An intrusion of REM into the wakeful state. Often frightening.

That is just the tip of the iceberg. There's diagnostic testing, finding the right doc, getting treatment, the harsh assortment of drugs for treatment and all of the lovely side effects they bring, work issues, disability (to qualify or not to qualify, that is the question), lack of understanding from family and friends, social implications, learning challenges, and how to beat the "lazy" label.  I've become a member of Narcolepsy Network and have found them to be a valuable resource these last few months. Also I have joined the NN group on FB. Its been great to communicate with fellow PWN's. It has also been very eye opening regarding the constant tug of war between treatment and meds vs. med side effects and ineffectiveness.

Since I have decided to not take prescription meds for my N+C, I am thankful that I do not experience the ups and downs caused by meds currently prescribed to help treat narcolepsy and cataplexy. I do feel sympathy for those that take meds to help their N and in return get horrible side effects, that they have to take yet more meds for. So the vicious cycle continues, it must be so exhausting. I do also see the people whose lives have been changed positively due to their N meds. That is a wonderful thing. Bottom line is that treatment can be a long winding road, filled with bumps along the way.

So this is my first attempt at blogging, don't hold it against me! We can learn together, or actually you can teach me... I welcome all positive and informative comments.  This blog is intended to increase awareness of N+C as well as explore natural ways of coping and healing.
Good night, sweet dreams ;)