Replies to '03/08 Stalking the Stars'

I was surprised to see that Narcolepsy was brought up on a show about bizarre or abberant "behaviors".  I certainly hope the large number of people doing research on Dr. Phil's staff didn't actually believe Narcolepsy is an "abberant behavior" or any type of  "behavior" for that matter.  It makes it sound like something that could be treated and cured.  There is no known cure for Narcolepsy.  It is a Neurological Disorder, not a "behavior".  An incurable disease.  I have had Narcolepsy since I was 12 but wasn't diagnosed until I was 27yrs old.  No one in my immediate family had ever had any experience with it or were aware they should have been watching for symptoms.  Mother once accused me of being on drugs my senior year in high school because I couldn't keep my eyes open during an argument with her.  I wasn't on drugs, that was my EDS (excessive daytime sleepiness).  I honestly thought everyone had extreme physical reactions to heighened emotions like I did.  But that's just a symptom of Narcolepsy called Cataplexy (loss of motor function).  I also was told to "suck it up" and be an adult when I would snuggle up to my husband the first few years of marriage after an extremely horrific nightmare.  It wasn't until later I found out that is also a symptom of Narcolepsy called Hypnogogic Hallucinations and yes, they are as frightening as the name sounds.  There is also sleep paralysis, automatic behavior, insomnia & short term memory problems.  But the worst has to be the ugly word that was used to describe me for many years by my parents and even my spouse.  That word is lazy.  I wanted to scream and cry and say "I"m not lazy, I'm just sleepy."  I slept all the time, I took naps every day and couldn't get enough.  My husband would get frustrated at me falling asleep after being in the passenger seat of a car for just 5 minutes.  He didn't understand.  I fell asleep in class too much so I couldn't continue college.  That made my parents angry.  They didn't understand.  No one did. I went to my family physician because I was experiencing some bizarre symptoms besides always being sleepy.  He sent me to a Neurologist and less than 24hrs later I was diagnosed with both genetic Narcolepsy genes.  I was able to take Provigil to stay awake, but impossible now that I'm pregnant.  I just have to fight to stay awake but the fatigue of pregnancy and the EDS combined sometimes frustrates me to tears.  I grab a soda on the way home from work hoping it will keep me from having an EDS attack while driving.  This is not a new problem  Before I was diagnosed I would drive back and forth to college nearly falling asleep every single day.  Most days I would pull over to the side of the road and take a 15min nap before continuing to school.  School is only 30min from home.  I'm not trying to get anyone to feel sorry for me, I'm just wanting people that thought maybe this was something that can be fixed with counseling to know it is an incurable disease.  I also wanted to show that it's also not just a great plot joke in a movie (Duce Bigalow/Moulin Rouge/Rat Race/Austin Powers).  This is a disorder I wouldn't wish on my worst enemy.  Narcolepsy is a disorder that damages certain brain cells.  These are the cells that regulate the time of the day when the chemical that puts you to sleep is released.  People with healthy brain cells sleep at night because those cells release the chemical at night the way they are designed to work.  My brain cells are permanently damaged and release the chemical at all hours of the day or night and not on any particular schedule.  This causes the EDS, which really messes with my sleep cycles.  It is very important that people sleep correctly at night, certain things must happen for a restful and productive sleep.  Narcolepsy affects my REM sleep which messes with my dream cycles.  Most people dream when they are in deep REM sleep at the end of their sleep cycle.  I dream at the beginning of my sleep cycle at night before my REM sleep can start.  I can have a hallucination/nightmare and wake up just to find out I went to bed just 10min ago.  This has turned my life upsidedown of course but I have adapted as best I can.  I also have other quirky traits, I'm a 34yr old, overweight, Insurance Agent/Soccer Mom who is by a funny coincidence obsessed with a celebrity.  My obsession has caused a few arguments with my husband of 13yrs but he does know I am aware of the difference between reality and fantasy.  He has dealt with my wierd obsessions the entire time he has known me, I have had 8 obsessions in 16yrs.  My previous one lasted nearly 6yrs.  I don't have control of when it will change or if it will ever stop.  I know it's not healthy but I have no desire to stop and I probably won't.  I am however, very happily married and will welcome my 2nd baby into the world next June.  I know this was a long post and congratulations to you if you read the whole thing,  I just wanted to bring to light a few tidbits of a not so obscure but mostly misunderstood Neurological Disorder called Narcolepsy.