Narcolepsy - A Sleep Disorder

Updated 09-14-07

This site is dedicated to all that live with the symptoms of narcolepsy

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02-21-02 The following letter was posted on the message board recently and I felt it was the perfect letter to start my web page with. It is so perfectly descriptive of what we narcoleptics ALL go through at one time or another in our lives that I think we all can relate to it. Anyone who does not have narcolepsy but has a friend, relative, co-worker, etc that does, will learn so much about what we go through by reading this. Thanks to DeAnna for such a wonderfully worded letter.~~~~Melody
I'm still sorta in shock that I can log on and actually talk to and read stories about people that are experiencing the same things I do. You understand. It makes me feel like crying. You know that it's very difficult to deliver the punchline to a joke without it coming out disjointed, with a pause in it because your jaw isn't working and your eyes have closed, or you're embarassed because it could come out slurred. You know that feeling....that awful feeling when you're driving a car and you start fidgeting and turning on the air conditioner, or turning up the radio....I once had to drive 50miles to a hospital to take my 6month old daughter at 3am in the morning, my husband sleeping in the passenger seat because he had to go to work the next morning oblivious of me singing the entire song "100 bottles of beer on the wall" from 100 down to zero just to keep from running off the road (before being diagnosed of course, I would never do something so reckless now that I know). You have the headaches, hot flashes, disorientation, grouchiness of being interrupted during a good nap, lack of energy.....such lethargy that people around you begin to call you lazy...."oh don't worry, if you got up off your lazy butt you wouldn't be so sleepy"..."if you went to bed earlier/later you wouldn't be so sleepy"...."everyone gets tired, just get up and make yourself do it"....and the one I'll never forget as long as I live, "young lady, what's the matter with you, are you on drugs or something? Are you? You'd better answer your mother young lady or you're grounded! Where did you get the money for drugs? Are you drunk?" At the time my mom said that I was a senior in High School. I had never tasted even a wine cooler, much less got drunk in the middle of the afternoon at age 16. Never hung around the "druggie" crowd so didn't have access to buy drugs even if I could afford or even want to....So I thought I was lazy. You understand. You know the horrible feeling....you laid down to go to sleep at 11:45pm...you bolt upright in bed, your heart pounding, you could have sworn someone had walked in the room, sat down on the bed (you felt it dip next to you) and put their hand on your leg (you felt the pressure of their hand)...you could have sworn they were there...but you're sitting up in bed terrified...and it's now 11:52pm. You lean over and try to snuggle with your spouse, nudging them awake to get some comfort and a bit of selfish sympathy...but they are grouchy and don't like being woken up, they say "it's just a dream, lighten up". It was more than a dream, it was SO real. So scary. You remember just a brief second before really waking, you tried to lift your arm....it was so heavy you can't move it...or your head...or legs. How many times have you been online reading something at 10pm and all of a sudden you realize your eyes are closed....you open them and it's now 11:30pm. You seemed to have read several pages because you turned the page, but can't remember what you just read. You can drive a car home from work in a fog and it hits you when you get out..."how did I get home? did I stop at every red light? did I obey the speed limit?" Or typing someone an e-mail and you suddenly can't stay awake. You send your friend a message telling them you're tired and goodnight and it comes out something like "so there was and tired. tomorrow maybe night." Automatically typing but not concious of what you are doing. I don't know anyone personally in my life with Narcolepsy so I feel so very alone. People are fascinated when they find out and a bit worried. Others can only comprehend if I compare myself with the "Duce Bigalow", "The Rat Race", or "The Sopranos" characters. But I am very fortunate that my sleep attacks are nowhere near that severe. I do have both marker genes for Narcolepsy and I have all 4 major symptoms but to a less severe degree. My cataplexy lasts a brief second and I don't loose consciousness or fall down. My head drops back a bit, my eyes close, my jaw drops, I could possibly drop what's in my hands and my knees buckle a bit. I will most definitely fall asleep at any place and time if it is warm and quiet. I've even fallen asleep standing up in Church while everyone is praying...good thing my husband was there to catch me or I would have really been embarassed. I had to quit College because I couldn't stay awake in class. I usually won't fall asleep if I am having a conversation with someone or doing my job at work. I am active enough and it's not so monotonous but I do have my bad days where I have to stand up and walk around a bit while doing my job. I hear the usual..."why don't you go get a coke or get a drink and it will refresh you"... but those people aren't too happy with my response "thanks but that won't really do any good and caffene will just make it worse"...I think the worst thing (besides the decimated metabolism) is that feeling. The anxious, fidgety, overwhelmingly depressing feeling that it's about to happen and I won't be able to stop it. When driving I usually have to chant "just a few more minutes...just a few more minutes..." to get myself to the next offramp or home. I hate being so tired. I had Narcolepsy for 12 years before I was diagnosed 4years ago. My metabolism problems started 10years ago and I gained over 100lbs in just a couple years. Of course every doctor in the tri-state area had a different diagnosis for me..."possible diabetes, possible epilepsy, thyroid problems, lack of exercise...go on a bean diet, the nutrition triangle, the grapefruit diet, slimfast, Jenny Craig, Weight Watchers, Nutri Systems and on and on and on and on" personally my least favorite was the nutritionist that had me keep a food diary and write down everything I ate then at the end of two weeks I would go in, weigh and we'd discuss what I did right and wrong.....this person actually said "you are going to have to make an effort for this to work, you have to write EVERYTHING down you eat, not edit it to what you think you should list, if you are going to lie like this all the time this diet wont work, no one can eat this little and be so big" I have yet to find a diet that works with my messed up metabolism, one that replaces what I have lost chemically....but I do have one thing to say about prescription help....... PROVIGIL IS A MIRACLE DRUG. I can't say enough good things about it. I tried other drugs but this one doesnt make me have the "buzz" feeling of just taking the drug or the "downer" of coming off the drug. I feel normal....not sleepy. Miracle Drug. Well, I'm so glad to have found this site. I'm getting a bit sleepy from typing so much and I don't want to embarass myself by typing someting I won't remember typing later. I never had anyone to talk to that knew what it was like. Sure, my family and friends are sympathetic and supportive but no one really understands. You do though. Thanks for letting me talk. I appreciate it alot.
Narcolepsy - A Sleep Disorder Index
Our Experiences - Page with your stories on your experiences with narcolepsy. Updated 09-14-2007.

Narcolepsy Message Board and Help Forum - If you want to get it off your chest, ask or answer questions or just commiserate, this is the place.

FAQ's - Frequently asked questions about narcolepsy and their answers.

NORD - A very important link to the National Organization for Rare Disorders that will help the uninsured or underinsured in getting certain meds for Narcolepsy. Look under the company names Cephalon (Provigil) and Orphan (Xyrem).

Research - A link to Stanford University's Narcolepsy Research page. Tells you all you want to know about the cause of narcolepsy, testing and research into treatment.

Narcolepsy Chat Room -Recommending a wonderful site for chats...click above to read about TalkAboutSleep.

News on Narcolepsy - News on research, new FDA approved medicines, etc. as it becomes available.

Family and Medical Leave Act (FMLA)- I have to admit, I had never heard of this until recently. Something definitely worth checking out.

American Disabilities Act - Information about the EEOC, find out if you are being discriminated against and what to do if you are.

Medicines - Information from the Stanford University on different medicines used in the treatment of narcolepsy/cataplexy.

Tips and Tricks -Want to submit or find ideas on coping with everyday problems associated with Narcolepsy? Updated 11-06-03.

My Favorite Links - Links to my favorite narcolepsy sites. Updated 09-12-07.

Other Links - More links to narcolepsy sites.
Updated 08-10-06.

The message below is one that I wrote when I first started this website. I meant every word of it then and still mean it now. I will keep trying; I hope you will, too. Thanks to all of you and God Bless. - Melody

When I first decided to make this page about narcolepsy, I didn't want to run on and on whining about the different things that happened to me. I could write a book, as I am sure all narcoleptics can. What I hoped was that someone who didn't understand (or even know what narcolepsy is) would read it and get a basic idea of what it is all about and that it is a very hard disorder to describe. People cannot empathize with it, they cannot relate, because to them, it just isn't serious or real enough. Some believe it doesn't even exist, that it is all in our heads...every one of our heads. Of course, we know different. But how do we get that across to everyone else? I wish I knew. All I know is that I will keep telling about my experiences and I ask that all of you fellow narcoleptics who read this, please, send me your stories. Maybe if enough of us speak out, people will start listening and realize that we are not crazy, we are not making this up and we are not lazy. We have a disorder that has no cure and is lifelong. It has disrupted our lives and we have to live with it. It would be nice if we could do that without the jibes, the sighs, and the exasperated looks of the uninformed. Maybe someday. Lets work together to try and make that someday come just a little bit sooner.

I am grateful that I have something that is not life threatening. I will not die of narcolepsy. I just want people to understand what it is and what we go through. It is not a funny disorder. It is very real, very scary and we just want to be able to live as normal a life as we possibly can.

Thanks for listening.



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Narcolepsy And Comedy - Why the two don't mix for this narcoleptic.

There Is NO CURE For Narcolepsy! - Read this important commentary by E C Knight, a fellow narcoleptic.

People Are Listening - An important letter from a student nurse.

A Real Wake Up Call - Another great commentary by my friend and fellow Narcoleptic, E C Knight.

About Me - Just a little background on me. Updated 08-10-06.


I Kissed My Son Goodbye ~ Honoring our military~ Click Here Now

A special letter from a friend...for my son and all other American's risking their lives:

To the American Soldier,

 You have my deepest respect and honor. The work you have done and what you are going to do are more noble than words can say. Take pride in knowing the freedoms we enjoy in this great country are because of the forefathers and you. As you carry out your missions do it with the same determination for success as those that made “The Declaration of Independence” come true. I know the cost of freedom and so does every generation of my family. Please know and understand that what ever your orders may be, this American citizen is behind you 100%. Because my family and I are depending on you, please permit me to stand at “FULL” attention and salute you. May God’s hand be on you and The United States of America.

 Shawn E. Auman
Citizen of the United States

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Okay, Everyone!

I am going to make a recommendation for narcolepsy chats. On Monday and Thursday nights, TalkAboutSleep have regular, moderated Narcolepsy/IH chats (they also have general and apnea chats other days of the week). They are always there on these nights and always willing to talk, help if they can and be your friend. I recommend them highly. I will list their actual schedule below and I do hope to see you there. ~~Melody~~

Scheduled Chats

ROOM

DATE/DAY

TIME

Talk About Sleep Chat - this will take you to the Schedule page (check schedules just to make sure there are no changes). Just click on "Chat Now" when you are ready to chat..

Mondays

Thursdays

8:00 pm to 10:00 pm Pac
11:00 pm to 1:00 am Eas

6:00 pm to 8:00 pm Pac
9:00 pm to 11:00 pm Eas

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THERE IS NO CURE FOR NARCOLEPSY!

By E. C. Knight

Just in case you don't have time to read my entire commentary, the title gets right to the point. There have been numerous articles in newspapers and magazines, and also TV news stories, about the cause of Narcolepsy being found. I must call your attention to the fact that while the cause has been found, a cure is still years away. The biggest problem with all this exuberance is not so much bad journalism, as it is, people jumping to conclusions before they even finish the articles they are reading. Just because you know WHY something is broken, doesn't mean you can fix it. Narcolepsy is a very complex neurological problem. There is an enormous amount of research to be done. Every day, Narcoleptics have to face skeptics who are either ignorant of the facts, or who attempt to invalidate the struggles of people with "invisible" disorders. I am presently in a legal battle with an insurance company over disability benefits. It is difficult enough to prove to them that I am ill, without having them tell me that there's a cure for what they say I DON'T have. This also calls to mind a situation two years ago when my Mother was in the hospital, facing some serious surgery. I was sitting in the recovery room, waiting for my Mother to wake up. Unfortunately, I was having a sleep attack. When the attending nurse asked me what was wrong, I told her that I had Narcolepsy. Her reply was, "Oh-I have a friend who had that. After she had the surgery, she didn't have any more problem". I (facetiously) said, "Oh-I didn't know there was a cure". "Oh yeah, they can fix it now", she said. Now, if an RN can be that be that far off base, how about everybody else? It's pretty scary to think that even some of the health care professionals we ask for help, couldn't find their butts with both hands and a flashlight. The rest of us could do well to avoid self-inflicted ignorance. Well, that's about as wound up as I dare get for now. Lately, I've gotten a pretty good handle on my Cataplexy problem. I don't want to go and mess THAT up now.

Best wishes to everyone,

ERNIE

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People Are Listening....
Read This:

Dear Melody,
I am a 32 year old nursing student. I have been researching Narcolepsy and found your site to be quite enlightening. I do not nor have I ever known anyone who has suffered from this awful disorder. I am writing a research paper and also doing a presentation on the subject for my nursing class. I want to make sure that "this" particular group of "new R.N.'s" are aware
and educated about narcolepsy, and don't make a foolish comment about surgery or pills "curing" it. I also want them to be sensitive to the vast problems facing the patients that are Narcoleptic.
Thank you again for helping the rest of us wake up! -----Sincerely, Christi Eaton, S.N.

In Regard to: People are
Listening

Now, you may think that this letter isn't all that important. It is just one little note from one little student nurse. Well, I feel it is very important. It shows that people in the medical community can be reached. The fact that she will be passing on this information to other students is a big plus for us. We have seen so much ignorance when it comes to narcolepsy. This is the first step. Letting people into our lives and showing them just what it is like to have this disorder. We can't stop now. We've seen the worst. Now it can only get better.

People are listening.

Melody

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NARCOLEPSY AND COMEDY -

Sometimes Laughter is NOT the best medicine

I have narcolepsy. I love comedies. Now let me explain why the two don't mix. When I was about 29 or 30 I was laying on my couch with my back against the armrest watching a movie called "All of Me" with Steve Martin. There this a particularly funny moment in the movie when the two persons embodied in Steve Martins character fight over the direction they each want to go. While laughing at this, all of a sudden, my head fell backwards. My neck popped four times on the way back and everything went black. I didn't pass out. I just couldn't see anything for a few seconds. I thought I had broken my neck. I also was not able to speak so I could not call for my husband who was making popcorn in the kitchen. He came in a few moments later and saw me with my head practically laying flat against my back. By that time I had started to get my speech back and asked him to please lift my head up. Logic was telling me that my neck was not broken but still it hurt like you would not believe. I had experienced loss of muscle control (at the time I had no idea what was wrong with me or what was actually happening) before but never like this. Well, when I was finally diagnosed with narcolepsy, I found out that one of the symptoms is called "cataplexy". Cataplexy is a loss of muscle control usually caused by an emotional reaction...such as laughter. I certainly learned that the hard way and learned well. I know not to watch a comedy unless I am sitting or lying down with my head well supported.

My neurologist once told me that only 20% of all narcoleptics experience all the symptoms (cataplexy, sleep paralysis, sleep attacks, hallucinations). I am in that 20%. I was diagnosed 15 years ago and still experience all of the symptoms. I guess the worst one is the hallucinations. Because they are so real and are (99% of the time) nightmarish I am afraid to go to bed. I usually stay up most of the night and go to bed at dawn. It is much easier to suffer through the hallucinations in the daylight than it is at night. I have experienced such things as rape, being beaten; being suffocated by cats, spiders, the devil...you name it. When the hallucination is over I feel so stupid because I know they are not real. But when experiencing them, my logic disappears.

I know most people believe that narcolepsy is a silly disorder and psychological. It is not. For those of you who still believe that...I would gladly trade places with you so you could see for yourself just how unfunny it really is.

Melody

 

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A Real Wake-Up Call
Or
Nightmare In The Age of Information

Every time I make a financial transaction, especially a transaction involving a vehicle, I risk being exposed as a narcoleptic. Every time I apply for insurance or renew my driver’s license, I risk becoming a statistic in a witch hunt, based on ignorance. It’s a bit like watching a science fiction movie where the government is hunting down “those horrible mutant freaks”! Presently, my home state does not require doctors (diagnosing sleep disorders) to report their findings to the motor vehicle or driver’s license bureau. There are, however, states like California that do. It doesn’t occur to them that people who know they have such problems are more likely to avoid driving while sleepy. Apparently, the lawmakers think every person with a sleep disorder suffers from the worst case scenario, falling asleep (without warning) face down in a plate of spaghetti. I have had symptoms of Narcolepsy since age six, not diagnosed until age forty-two. I did have driving problems when I was working, because I had no choice as to when I drove. I worked as a field service technician before I learned that I had Narcolepsy. I worked for an additional four years on CNS stimulants, until a heart attack made stimulant medication too much of a health risk. Now that I have retired, I never drive sleepy. I know better. I am one of the luckier narcoleptics in that I have ample warning that sleepiness will occur. I have been driving since 1967, so I had ten years experience with my disability before I got my first driver’s license. Of course it would be an additional twenty-six years before I had a name for the problem, but (trust me) I had plenty of driving experience by the time I received my diagnosis. It’s interesting that people like me are automatically considered menaces while idiots driving down the street with cell phones plugged into their heads or shaving or putting on makeup in traffic are considered normal. I would like to state emphatically, those who intentionally drive while impaired, (for whatever reason) are menaces. I wonder if it ever occurred to the powers that be that a person who seeks a diagnosis is trying to solve a problem, not cause one. I’d rather be out on the road with a hundred conscientious narcoleptics than be out on the road with substance abusers or people who have been twenty hours or more without sleep. It makes me wonder who the hell really needs to wake up!

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OTHER LINKS

MY FAVORITE LINKS

BiblioSleep and
NAPS two great resources to research Sleep literature.

Narcolepsy Research Project at University of Pennsylvania - School of Nursing.

Narcolepsy Sleep Forum , managed by
SleepNet

National Institute of Health on
Narcolepsy and Sleep

National Sleep Foundation

Narcolepsy : excellent info compiled by the National Center for Biotechnology Information.

NarcolepsyInfo.Org - A wide selection of original articles (including bibliographies) summarizing issues and research in the realm of narcolepsy.

Narcolepsy Network

Provigil, developed by
Cephalon, Inc.- for the treatment of Narcolepsy

Sleep Disorders Help -Help for sleep disorders will provide assistance to individuals who are experiencing sleep disorders and sleep deprivation.

Sleep Disorders Guide - A comprehensive information guide about sleep disorders. Descriptions, symptoms, causes, treatments of various sleep disorders like sleep apnea, insomnia, snoring, restless legs and narcolepsy.

Sleep Research Society:, for people interested in pursuing a career in the field of Sleep.

The Sleep Well , designed by Dr Dement of Stanford University.

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If you have a story you would like to share with other narcoleptics...feel free to send it to me at:

cataplexic@cataplexic.com

Please specify it is for the "Our Experiences" page and let me know if you want your email address published as well (I will post it in such a way that scanners for email addresses will not be able to pick it up).

NORD - A very important link to the National Organization for Rare Disorders that will help the uninsured or underinsured in getting certain meds for Narcolepsy. Look under the company names Cephalon (Provigil) and Orphan (Xyrem).

Sleep Wake Disorders Association of Toronto -Support and information for sufferers of sleep disorders and their families.

Center for Narcolepsy - Excellent site from Stanford University...the leader in narcolepsy research and information. A must visit for all narcoleptics.

Orphan Medical - Makers of Xyrem, prescribed for the treatment of cataplexy.

Talk About Sleep -One of the best sites (if not the best) for information, support, etc. Message boards for most sleep disorders and scheduled chats. Great people, great site! Highly recommended!

The Sleep Site: Award-winning site that offers information and help for almost all sleep disorders.

Kleine Levin Syndrome Website: For information on a very rare, very unusual sleep disorder. The only website of its kind (that I could find) on this subject

Chinese-Medicine Directory: The Directory is a portal generally related to alternative medicine but has many other things as well.

Insomnia:Make Your Sleep Better : Read the latest information about insomnia. Discover causes, symptoms, side effects, and treatment of this disorder.


About Me

08-16-01
updated 08-10-06

Hi.. my name is Melody and I am now almost 49 yrs old. I just decided to update this info when I realized that last time I did.. I was 46.. lol. Am almost ready to celebrate 5 years of this site being on the internet and want to thank you all for coming and helping by sending of your stories and joining in on the message board. I hope that with all we have done we have managed to educate the uninformed about narcolepsy. I have had narcolepsy, cataplexy and all the other symptoms for about 22 years now... gee, how times flies when you're having fun (forgive my strange sense of humor.. lol). I have found that with time, while some of the symptoms seemed to lessen, others have stayed the same. I haven't been on any medications for about 3 or 4 years now (I think.. my memory is not what it used to be thanks to N, as well). I have been lucky that I haven't had to work (though that may change soon and back to meds I go) and my son is all grown up so I was able to test myself without meds for all this time. Am scared to death to try to enter the work force again after 18 years.. not even sure if I CAN work but will find out soon enough, I guess. Life does go on .. whether we are awake for it or not. Take care each and everyone of you and I wish you all the best.

Melody