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NARCOLEPSY Sucks!

HELLO EVERYONE! MY NAME IS BRIAN PETERSON, I'M A 30 YEAR OLD NARCOLEPTIC FATHER! I WANT TO DEDICATE THIS SITE TO ANYONE SUFFERING FROM THIS HORRIBLE, INCURABLE ILLNESS! IT'S DESTROYING ME, MY LIFE, AND MY FAMILY! I HAVE BEEN ON 8 DIFFERENT MEDICATIONS PRESCRIBED BY MY NEUROLOGIST, NONE OF THEM HAVE WORKED. I CANNOT WORK, BECAUSE I HAVE 3-7 SLEEP ATTACKS DAILY THAT RANGE ANYWHERE ACCORDING TO MY WIFE KRISTY, FROM 30 MINUTES TO 4 HOURS! I'VE BEEN DENIED SOCIAL SECURITY BENEFITS 4 TIMES , BECAUSE ACCORDING TO THE STATE AND THEIR DEFINITION OF DISABLED, I AM NOT! I AM CURRENTY GOING TO SOUTH UNIVERSITY ONLINE FOR A BACHELOR'S DEGREE IN CRIMINAL JUSTICE, EMPHASIZING IN COMPUTER CRIME. I WAS PUMPED, BECAUSE I WAS PLANNING ON WORKING FOR THE REAL NCIS IN MAYPORT, FL, NOW I'M HAVING SECOND THOUGHTS. CAN I EVER HAVE A CAREER WITH THIS, SO FAR NO MEDICATION HAS WORKED. WHAT DO I DO? I'VE LOOKED ONLINE SEARCHING FOR ANSWERS, HOPING THAT SOMEONE HAS AN IDEA OR SOMETHING, NOPE NOTHING! I HAVE READ , WHAT A SHOCK , THAT MOST PEOPLE WITH THIS ILLNESS, DO NOT WORK, ARE ON SOCIAL SECURITY AND ARE QUESTIONING THEMSELVES ABOUT WHAT THEY ACTUALLY CAN DO. PLEASE JOIN ME ALONG WITH ANYONE ELSE DEALING WITH THIS FRUSTRATING, DIFFICULT, AND INCURABLE ILLNESS AND LET'S FIGURE OUT A WAY TO HELP OURSELVES AND OTHERS FIGHT THIS!
narcolepticnhatingit30 narcolepticnhatingit30 26-30, M 8 Responses Oct 6, 2009

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I feel the same frustrations as you. I want to work, but I m so tired! I tried to get disability to help provide fro my family... but being a stay at home mom for so many years I haven't worked enough to contribute to social security. It's so frustrating!! The feeling of being completely defeated!<br />
I have searched and searched for something I can do....there's nothing but a sense of hopelessness!

I read a few weeks ago but I can't remember which site...that to file under epilepsy and that will get you should qualify.....daball

I have had narcolepsy since I was in high school, I am now 26. I have never taken any medications for it but i am considering it now because it is becoming worse as I get older. I am a smart person but had to get my GED because I missed so much time of school oversleeping and falling asleep during class. I really dont know how I made it through college, but I did. I am now a nurse, I have worked around it in this proffession because there are many shift options including 4 hour shifts. I also am always extremely active and busy and it helps me stay alert. I have done well at work ,but I suffer much like you because I have a family. staying awake a work becomes priority and my husband is extremely supportive, and picks up the slack while i sleep my life away. He has put his career on hold to be home with our son. It has to be this way because it's not safe for me to watch him myself while he's so young because I cannot fight the sleep when it comes on suddenly..and if it's just me and him in a quiet house I KNOW I could never stay awake the whole day while my husband is at work. I devote my most alert times to work ( which is at night) but I find that I sleep through so much of my family life that I become depressed and very guilty. Working night shift has served me well as far as staying awake and having a normal career because when I am not working I can't stay asleep at night.... I have never fallen asleep at work , its a busy envirornment, the lights are bright , its noisy , filled with adrenaline rushes and i can't sit down long enough to get tired. so if finding a career to support your family is a priority for you, i would suggest busy shift work.

I have a suggestion... I went to my sleep doctor a couple of weeks ago an we had a nice litle chat. He said they have recently made a break through in narcolepsy. That they now know what chemical is missing in our brains causing narcolepsy. They haven't yet figured out how to fix it or get the chemical into our brains. However they are currently doing a new exparimental research on medications. If your interested in finding out more...<br />
kwinkler@communityresearch.com<br />
Kory E. Winkler<br />
(859)331-2584 ext*112

Yeah, I agree. Thare's so many things that are annoying that comes with it. Either people laugh at you like it's some kind of a damn joke or they think you're just lying about it to get away with being lazy! My previous boss was such a jerk about it. He would patronize me in front of everyone and act like I was making up my illness for the hell of it! Unfortunately, I ended up having to ask for an accommodation under the ADA. My boss responded with..."don't talk about your Narcolepsy, nobody wants to hear about it!" among other similar rude and condesending remarks. When I went to HR to talk to them about my accommodation request and to report my boss's immorral as well as illegal actions toward me, they told my I must of misunderstood him. Yeah right. I was fired 3 weeks later. My boss tried two other times within those 3 weeks to find a reason to fire me but I always fought back and prooved he was lying to retaliate against me. I guess they (HR) didn't want to "bother" with me any more so when my boss lied again and said I was tardy too many times, they fired me. Even when I showed them proof that I wasn't tardy on the days he claimed. (I had copies of my clock in reports.) It's a hard fact of life but not a lot of people care about how debilitation Narcolepsy can be. The sooner I accecpted that, the less frustrated I became. Just because you can't "see" my disability... doesn't mean it doesn't exist!

Well put Brian. It's clear through your statement that you're concerned at a serious level for your family's well being. You gave a lot of info in a few words. I only wish that any of us could help other than with moral support. But we cannot. Maybe those docs that treat us with meds should join sites likes this to see what they're really treating. Strategic and aggressive behavior towards making work a number 1 priority has helped me excel at work rather than fail. That and my weakness is to fall into a daily routine. Lucky me, cause I can do that half awake any day. It's insanely boring but my wife loves the paycheck.

I am 52 years old and have Narcolepsy since I was 13. Have you tried Xyrem (Gamma Hydroxy Buteric Acid)? It is very helpful for some. The only drug that actually enables me to fully function like everyone else (to the point where I can even forget I have Narcolepsy) is Methamphetamine. It has enough potency, staying power, and has very few side effects (for the Narcoleptic).

I am 52 years old and have Narcolepsy since I was 13. Have you tried Xyrem (Gamma Hydroxy Buteric Acid)? It is very helpful for some. The only drug that actually enables me to fully function like everyone else (to the point where I can even forget I have Narcolepsy) is Methamphetamine. It has enough potency, staying power, and has very few side effects (for the Narcoleptic).