BellaOnline Forums Health and Fitness Disabilities Do you know what Narcolepsy is, and what causes it

Narcolepsy???? have you even heard the word, let alone know what it is?? I bet many of you said oh, i know it's a sleep disorder.right? WRONG!! oh, you will find it listed under sleep disorder,but the funny thing is,you can't get it without a certain neuro---logical disease. i know this, because at the age of 36 during my last pregnancy, i began experiencing little things, like falling for no reason,or blacking out. it took me over 2 years to get diagnosed,alot of doctor's told me it was all in my head.funny thing is in a way they were right.. the neuro-logical disease causes the part of your brain that produces the chemical "hypocretin,to basically shut down[die in a way],therefore you no longer receive the chemical.without the chemical your brain and body do not function together as one. your body may be awake and ready to go, but it's like someone flips a switch and your brain shuts off.there isn't a cure, and this disease carries alot of other things with it. you develop "Narcolepsy", which most people think is a sleeping disorder. well it's not, not really. you aren't asleep, your brain shuts down. you can also develop "Cataplexy", this is brought on my strong emotions or stress. it causes you to lose all muscle control and you just fall down or fall over, or drop things.then there's "Automatic Behavior", this is where if you have done something routinely for a long time,you can do it when your brain shuts off. for example, i can drive a car, when my brain turns itself off. then there is "sleep paralysis", that's when you are at the brink of sleep, but still awake and aware, but you paralized unable to move,talk, blink,nothing.and let's not forget about "hynagogic hallucin-ations", that's when you are sleeping you dream so vividly it's hard to distinguish what is real and what isn't, some of them are nice,while others are horrific nightmares,to the point that i have woken up in a cold sweat,screaming.You suffer from chronic fatigue because when your body is asleep your brain is on overdrive.so that when you wake up you are more tired than when you laid down.this is just a small amount of information i have told you.what i haven't told you is it took me over 10yrs. to win my disability, and that just happened 3 months ago.but worse than that i had never met another person like me until this past October. many people are misdiagnosed or never diagnosed, they have cut our funding for research,and the list of problems goes on... we are trying to raise awareness,but it's just not as easy as one might think.i just discovered that we have an awareness ribbon, it's the black ribbon which fits because we live in a constant state of fog and darkness. please help raise awareness. if you would like more information,please contact me. we need your help!!!! thank you nannie2

Hi Nanny,

I was suprised to see Narcolepsy in one of the threads! I have Narcolepsy too. Once I realized what Cataplexy actually is (from a book written by a person with it) I realized that I have had it since I was about 6 or 7 years old.

I am not sure if I would say it is not a sleep-disorder though it is an auto-immune disorder that kills off the brain cells that produce Hypocretin. I have several sleep-disorders besides Narcolepsy and used to think that all my symptoms were from just Narcolepsy.

I met someone else with this disorder for the first time in October too! I attended the annual conference for the Narcolepsy Network. I am wondering if you attended it too. We may have met! I plan to be at the next one too! It truly empowered me. I am now seeing a physician that I met there, and I have started Xyrem.

Where do you buy the ribbon?

Have you joined in any of the research projects on the disorder?

Do you have a problem with chronic pain also?

Please keep in touch!

One of my high school classmates was diagnosed with Narcolepsy. She would suddenly fall asleep and then wake up - or at least that's how I recall her explanation. I didn't realize it was so complex.

hi robbie, yes, i was at this year's conference,it was my first time i had ever attended one. i was the woman who discovered our ribbons. i get them at sammie@ribbonsforareason.com she also has an incurable disease that's why she started who website. she donated 25 for the conference.i was told at the conference without the neurological disease, you can't develop Narcolepsy. and that they don't like it being called a sleep disorder, be-cause it has so many other problems attached to it.and you're right, i came away not feeling like a lepar,anymore.i had never met anyone like me, until the conference. i have been sick for over 10yrs. i live in a very small town,and they don't understand my illness, so i have lost family, friends,my home,car,career,everything in the end.i just won my disablity after a 10yr. fight.but it hasn't helped,i had hoped it would give me a feeling that i would not have to worry about finan-ces anymore.but,you do.i was on xyrem for a little whole but,i almost choked to death several times and so now i am not allowed to take it.i am one who goes all out,so my daughter tells me.you see,i have everything narcolepsy,cataplexy,auto- matic behavior,sleep paralysis,memory loss,and concentration problems,etc.it hit during my last pregnancy,i was 36,but didn't get diagnosed until i was going on 38.it took every- thing i had,i was a single mom of 3,and suddenly homeless. but, i just couldn't quit,oh at times i wanted to but, i'm still here kickin'.. keep in touch, i'd really like that. nannie2[barbara hopkins]

hey bubbles; yes it is a very complicated disease [like MS].but, even with all the research, there is no cure in sight.we live in a constant state of fog.narc's don't sleep like we use to before we became ill. nannie2

Have you been checked for Sleep-Apnea? The reason I ask is because I did not have obstructive-sleep Apnea on my on my first 4 or 5 sleep studies, but when I had one while on medication I had severe Obstructive-Sleep Apnea. I have always had mild Central-Sleep Apnea.

Also, this used to happen to me before I had rhinoplasty. I could not breathe through my nose, and when I would wake up with sleep paralysis I could not open my mouth to breathe. This happened to me on my 3rd night of Xyrem too, because I had a stopped up nose from a cold. I use (a lot) of saline spray now every night before I go to sleep.

I have a friend and colleague with Narcolepsy. We don't talk about it much and I've really become educated by the passion and frustration in these posts! I had no idea how complex of a condition it is. Thank you all for sharing about it!

I found out more here:

www.ninds.nih.gov/disorders/narcolepsy/detail_narcolepsy.htm

www.stanford.edu/~dement/narco.html

www.narcolepsynetwork.org/