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My Narcolepsy Dreambook Guestbook

Return to: Narcolepsy - A Sleep Disorder or Our Experiences

NAME	Georgia in Illinois
COMMENTS	I have not even had a "formal" diagnosis yet, as my psychiatrist just brought narcolepsy up to me last week. I was tested last year (at age 48!) for ADHD, and have been taking a form a ritilin since then. But I also have type II bipolar disorder, and the ritilin sometimes caused mild hypomania. And I STILL fell asleep at ridiculous times - like sitting in my office talking to a student, or for a split second while actually walking across the classroom. And, while I don't really have any of the "other" symptoms of narcolepsy, I have always gone into REM immediately upon falling asleep - I thought that everyone did! I also have extremely vivid, and what seems like constant, dreams during the night. Anyway, I hope that I can find other people to talk to about this problem.....
DATE	Sunday, March 9th 2008 - 07:45:14 PM

NAME	Lori-Anne Ketola
E-MAIL	willowravenstorm@gmail.com
COMMENTS	Thank you for your site. I am undergoing diagnosis for narcolepsy. The specialist is pretty sure I have it but I have a sleep latency test to do before confirmation. They tried to do one before but I slept through the night and the whole next day so they had to rebook :( Thank you for sharing your information. It was nice to find a place to learn about what I most likely have that is more specific than a generalized list of symptoms and possible treatments.
DATE	Friday, February 29th 2008 - 11:16:52 AM

NAME	Earl
URL	http://www.Free1deed@yahoo.com
COMMENTS	Have experienced being sleepy most of my life. Hard to get up in the morning and somtime sleeping a halfday. I have come home from work and parked my van and slept for several hours sometimes having tobe awakened by my wife calling me the cellphone. Recently fell asleep while driving my daughters car. It was only by the grace that did not run out into major street in my city. I am writing because I have a son who was envolved in a fatal accident after falling asleep at the wheel. May God continue to bless your dedicated work to inform of this malady that effects so many. Thank once again. Iwould appreciate more information diagnoises and treatment.
DATE	Tuesday, February 5th 2008 - 06:27:11 PM

NAME	Brian
E-MAIL	b_a_grant@consultant.com
COMMENTS	I loved your opening letter. Everything it said was very true. Living with Narcolepsy is hard enough, and it is made so much worse when people start bombarding me with their "common sense" answers to my problems. I really hate this condition, it has altered my life in so many negative ways. I sometimes find myself terying to bargain with my doctor for some kind of cure. I'm glad there are people like you out there to help spread the truth.
DATE	Friday, January 18th 2008 - 11:31:50 AM

NAME	George Minahen GEM
E-MAIL	ggbellringer@yahoo.com
URL	http:
COMMENTS	Untill I found your site I had only talked to another Narcolectic one time. I went to a support group one time. working, driving 80 miles to an evening meeting, and working the next day. was not an option. I feel you have given me a voice, and a pair of speakers to hear with. Not the ten commandments, but definatly the WORD! GEM
DATE	Tuesday, January 1st 2008 - 08:57:58 AM

NAME	9-21-07
E-MAIL	Amy
URL	http://willamash@aol.com
COMMENTS	Would like to hear from others with Narcolepsy especially if they have severe cataplexy events. I have no one to talk to who really understands what I am going through. So glad to have found this website.
DATE	Friday, September 21st 2007 - 12:55:55 PM

NAME	cindy
E-MAIL	schoonover84@sbcglobal.net
COMMENTS	I cried when I found this website. It is so wonderful to be able to communicate with people who really understand what I am going through. I have dealt with narcolepsy now for 12 years only to be told 4 years ago that I had narcolepsy. I have been made to feel that I was crazy because I had been to several different doctors only to be told that they couldnt find anything wrong with me. Thanks for this you have made my day,week,month,year.
DATE	Tuesday, July 31st 2007 - 07:16:31 PM

NAME	Georgina MacCallum
E-MAIL	georgina_maccallum@hotmail.com
COMMENTS	I was diagonised with Narcolepsy about 4 yeras ago. I take mediaction called, Dexadrin to keep me awake. I am in the process of going back to the sleep clinic for a re-assessment as my condition seems to be getting worse. I have a hard time getting up in the mornings, functioning at work, and I basically go to work and then come home and sleep the night away and still need to sleep again. Narcolepsy is beginning to take over my life and I feel drained all the time. People do have a hard time understanding this disorder and I think they do think I'm lazy but on most days I am so tired that I could cry. I don't want to drive, walk do work as it all hurts so much. My body goes into a zombie state and I have a hard time getting out of it. I am getting scared that this can get worse and than what>
DATE	Saturday, July 21st 2007 - 12:34:48 PM

NAME	ASHLEY
E-MAIL	Arpalmer01@aol.com
DATE	Sunday, June 24th 2007 - 12:57:27 AM

NAME	Jimmy
E-MAIL	starliner57@copper.net
COMMENTS	Excellent site! Have either Sleep Apnea or Narcolepsy myself. Horrible disorder, very mis-understood. Have lost several great jobs (and nearly my life while driving), and currently I am being "watched" at work for sleepiness, so another job might go as well. At age 52, it's hard to find decent new jobs with a sleep disorder,and I am considering becoming self-employed to avoid this problem.
DATE	Thursday, June 14th 2007 - 05:18:47 PM

NAME	janet brooks
E-MAIL	janetjewal@btinternet.com
COMMENTS	Im 42 & developed cataplexy before it was discovered that I had Narcolepsy. That was 10yrs ago. I have just cryed my eyes out to find that other people have had the same problems that I've had and that I'm really not alone. Thanx
DATE	Friday, May 25th 2007 - 10:26:23 AM

NAME	J.J. Brown
E-MAIL	jjbrown11@gmail.com
COMMENTS	Thank you for such a supportive and informative site.
DATE	Thursday, May 3rd 2007 - 01:15:17 PM

NAME	Mary McQuaid
COMMENTS	Thank you for offering this site. I was diagnosed with narcolepsy yesterday, after 20 years of signs and symptoms. In my frantic race to learn more about this disorder, I happened upon this site, and I am very impressed with the info offered. As a newly diagnosed person with narcolepsy, and also as a health care professional, I will be checking this site on a regular basis. Please keep posting links everyone! Thanks again!
DATE	Thursday, May 3rd 2007 - 09:24:46 AM

NAME	Karen S. Ackerson
E-MAIL	kacker61@hotmail.com
COMMENTS	I've been going through all of these symptoms for about 6yrs. I do have sleep apnea, diabetes,slow thyroid,a heart condition called cardiomyopathy,congestive heart failure,asthma and arthritis. also ,I'am 45yrs old. I have been so embarrased with falling asleep in the middle of a conversation or slurring my words and being accussed of taking drugs. [Iam on several meds, but for all my medical problems. Iam not taking any narcotics.] Anyway, Iam very happy to know that Iam not alone either. KAREN
DATE	Saturday, April 28th 2007 - 02:55:02 PM

NAME	Vanessa L. Jordan
E-MAIL	vejabon@yahoo.com
COMMENTS	Hi, I like what I read about you. I have had narcolepsy for a long time also. you can read mine later
DATE	Tuesday, April 24th 2007 - 10:47:36 AM

NAME	Charlie Zadigan
E-MAIL	zadigan@aol.com
COMMENTS	Hi Melody, Thank you so much for your websight. You can't imagine how isolated I was before I discovered it. I'm on several times a day and love all the PWN. Just to talk w/ people like me makes my day.. Thanks again, Charlie
DATE	Monday, April 23rd 2007 - 07:35:43 AM

NAME	debby
E-MAIL	answerpost@hotmail.co.uk
COMMENTS	Your site enlightened me to another sleep disorder I was unaware of. Thank you. Sadly, it is not what I am suffering - my fear is of going to sleep and not waking if something happened.... so everynight I stay up 'til my body gives up and I then have to. I can't catnap or sleep on planes.... I have enough trouble in my own safe house getting off to sleep. I am permanently tired.... yet scared to go to bed to sleep. I wish everyone on your site sweet dreams and bright futures. Thank you. Deb
DATE	Saturday, April 21st 2007 - 10:46:14 PM

NAME	Zach
E-MAIL	zachware2003@yahoo.com
URL	http://www.myspace.com/sonofthec
COMMENTS	Melody, soon after my official dx of Narcolepsy (in 2005), yet a sufferer UNdiagnosed for 10 years (1994), your personal story was one of the first I read online. I printed it out and kept it with me, because your account mirrored my life and experience in an all-too-eeiry way. Thank you for being another person who lives with this, and still surges ahead with strength and confidence!
DATE	Monday, April 16th 2007 - 03:28:30 PM

NAME	VIVI
E-MAIL	babs2364@yahoo.com
COMMENTS	God bless ...I am tired.
DATE	Monday, April 16th 2007 - 12:15:42 PM

NAME	Terry Noble
E-MAIL	royaltdn@peoplepc.com
COMMENTS	Will write Melody.
DATE	Tuesday, April 3rd 2007 - 09:47:52 PM

NAME	Mike Notarnicola
E-MAIL	mikenotar46@comcast.net
COMMENTS	Melody, I've been around a while but we have never talked. When I first came here I was scared to death. Here I was in my forties diagnosed with n. The good people here have calmed me, taught me , made me laugh and cry. In bad times when I need help I get help and support and in good times I try to give help and support. I spread the word to the normals every chance I get. I hope to come here every day for the rest of my life. Thankyou over and over for your efforts. Mike
DATE	Tuesday, March 20th 2007 - 01:46:33 PM

NAME	Lisa Lee-Bruns
E-MAIL	llbruns@insightbb.com
COMMENTS	Thank you, thank you, thank you.
DATE	Monday, February 19th 2007 - 10:11:03 PM

NAME	Holly Delana
E-MAIL	Delana02@hotmail.com
COMMENTS	24, narcelapic, single mom of two, livin in a small town where people like us are unheard of!!!So relieved to find this site and know that i'm really not alone!!! ya'll have been a new {much needed} source of 'encouragement'!
DATE	Thursday, February 8th 2007 - 08:17:23 AM

NAME	EVA MILLER
E-MAIL	EVAMILLER30@aol.com
COMMENTS	thank you so much, i feel so blessed to have made a connection with others i can relate to.
DATE	Saturday, January 27th 2007 - 01:57:00 PM

NAME	Woody Ebersold
E-MAIL	woody@ebersold-online.com
COMMENTS	At last , some people that don't think I'm nuts. Been a "sleeper" for years and now that I'm older it's worse.
DATE	Thursday, January 25th 2007 - 06:42:55 PM

NAME	Hilda R. Heesh
E-MAIL	hrargandona@hotmail.com
COMMENTS	Ijust findout i got this an i scare i allso do no know to much inglish.
DATE	Wednesday, January 24th 2007 - 02:14:26 PM

NAME	Lantana
E-MAIL	dhowell19@cox.net
COMMENTS	Thanks for making a place for us to find others who understand.
DATE	Monday, January 22nd 2007 - 02:52:21 PM

NAME	laura j evert
E-MAIL	dreamiestgirlever@yahoo.com
URL	http://www.myspace.com/dreamiestgirlever
COMMENTS	i am the 1999 founder/coordinator of N[ART]: a grassroots effort using art + creativity to share the experience of living with narcolepsy + the importance of sleep. visit http://groups.yahoo.com/group/narcolepsyart for more information or email me directly. i also have a sleep mail art call. THANK YOU MELODY!
DATE	Sunday, January 21st 2007 - 09:51:44 PM

NAME	liz moore
E-MAIL	lizzy.cov@ntlworld.com
COMMENTS	Just found your site - all the other sites tell you about diagnosis, treatment etc., but nothing from other people who have it. I will be coming back for message board and sleep chat. thanks!
DATE	Saturday, January 20th 2007 - 06:22:16 AM

NAME	melanie moment
E-MAIL	kamrysmom @yahoo.com
DATE	Monday, January 8th 2007 - 02:52:05 PM

NAME	Betty Swanton
E-MAIL	bettyswanton@yahoo.com
COMMENTS	I am a 61 year old female diagnosed with narcolepsy at age 32 although I had had symptoms long before that. I will post my story later when I have more time, but thisis an important site to help educate everyone about this little understand disorder. Thank you, Betty
DATE	Thursday, January 4th 2007 - 09:12:44 AM

NAME	Noah B. Dillion
E-MAIL	noahbdillion@yahoo.com
COMMENTS	I am presently composing a self help book. Enjoyed your site, and posted it on my favorites. I'll be back. Look for A NARCOLEPTIC IN THE U.S. ARMY soon to be published.
DATE	Saturday, December 30th 2006 - 06:06:28 PM

NAME	TaeLynn
E-MAIL	tae1719@gmail.com
COMMENTS	Thank you! Thank you! Thank you!
DATE	Saturday, December 30th 2006 - 01:41:11 PM

NAME	Rachael MacSwain
E-MAIL	rachemac@msn.com
COMMENTS	I have just book marked your site as a favorite. As a fellow Narcoleptic I thank you for putting the time and effort into this site. I always wished there was somthing I could do to make people more aware and you are doing it. I am always looking for support groups or just new sites or info but I think this one has won me over. I'll definitely be back. (often) Rachael
DATE	Sunday, December 3rd 2006 - 09:24:21 PM

NAME	Norman Christian Hoffmann
E-MAIL	HellsAngels41@hotmail.com
COMMENTS	Hi, I have narcolepsy and I have been looking for so long for someone else to share my jurney. I want to cry out loud like Judas wept before he hung himself. Thank you for creating this website. I am the winged serpent and you are the dead sheperds and together we shall lead the flock through the valley of darkness. Snakes. The roof over our heads has been removed.
DATE	Thursday, November 23rd 2006 - 04:59:33 PM

NAME	Chinena Watkins
E-MAIL	Chinenadionne@aol.com
COMMENTS	I am a fellow narcoleptic and my family just thinks I'm lazy. I wish people could understand the strain that living with this disdorder puts on a person.
DATE	Sunday, November 5th 2006 - 03:12:00 PM

NAME	Sue
E-MAIL	sue.elsen@gmail.com
COMMENTS	Thank you for this website. It has been very interesting reading about Narcolepsy. My daughter (age 13) was just diagnosed today. I remember when she was in kindergarten and her teacher complained that Mary was the only child in class that wanted to nap every day. I wonder how long she has lived with this? We are both hoing that with medication, Mary can start a normal teenage life and start to enjoy anything with her friends after school that doesn't involve napping. The doctor has decided to wait on treating the Cataplexy until we have the Narcolepsy under control. Mary has fallen a couple of times (luckily, resulting in just bruises) but she hates laughing because of the facial twitches. God bless all of you! A Happy Mom:)
DATE	Thursday, November 2nd 2006 - 05:01:42 PM

NAME	chaulitta
E-MAIL	chawat85@yahoo.com
COMMENTS	Hi everyone I'm a 21 year old female trying to go to school to pursue my dreams of being a registered nurse.sometimes it seems as if the odds are against me. No one takes my education seriously.The students and the teachers look at me as if I dont belong there. I've been living alonesince my mothers death in 2004. when I have an episode (so I call them)people stand around me laughing and making jokes because their ignorant and dont understand narcalepsy effects your life mentally, physically, emotionally, and socially.Scarring your mind, body, and soul.
DATE	Monday, October 23rd 2006 - 05:16:48 PM

NAME	Diana Armitage
E-MAIL	DankyKay33@aol.com
COMMENTS	I am so glad I came across your page. I knew you talked about having one but never asked the website. Its very interesting and very informative(sp) lol. I knew about it but now I understand and know a little more. Thank You for all your work into these pages. Love you girl
DATE	Friday, October 13th 2006 - 08:35:02 PM

NAME	Chemenge
E-MAIL	her1963@aol.com
COMMENTS	Came across this website yesterday. Glad to know I am not alone. Thank you!
DATE	Tuesday, September 12th 2006 - 11:16:49 AM

NAME	Soon Ee
E-MAIL	seyeap@yahoo.com
URL	http://www.super-selfhelp.com/insomnia.html
COMMENTS	Your site is very colourful, interesting and full of useful information Thank you http://www.super-selfhelp.com
DATE	Monday, September 11th 2006 - 02:22:47 AM

NAME	Greg
E-MAIL	gentlefarrier@aol.com
COMMENTS	Need to discuss the sitting on the bed thing when your sleeping. Beleive this is an actual benifit of narcolepsy Do you know for a fact that it's not real If you leave the lights on bet it doesn't happen Havent visited any of these sights in four years but i was looking for answers. Thinking my blood pres meds may be taking my life away from me again and I can't live that way PS the letter on your home page was that your? It sounds so much like me alittle less some ways maybe a little more others
DATE	Tuesday, August 29th 2006 - 05:41:16 PM

NAME	Tim
E-MAIL	timmellichamp@mpwonline.com
COMMENTS	I'm 36 and just getting diagnosted w/ Narcolepsy. I'm conserned about losing my drivers licence.
DATE	Friday, July 14th 2006 - 10:17:52 PM

NAME	Pat
E-MAIL	tinou123@aol.com
COMMENTS	I came across your website and was very interested in what people thought about Provigil Cn.I do not have Narcolepsey but I an on medicatons for my nerves and panic attacks. I have just been given Provigil because my medicatons for my nerves make me so very tired that I could sleep all day. I took 1/2 pill today and it was great! I worked in my garden and enjoyed myself for the first time in months. I just hope they do not find anything wrong(side effects) and take it off the market. God Bless ya all!
DATE	Friday, July 7th 2006 - 07:54:45 PM

NAME	Adelina Lopez
E-MAIL	rayaddielopez@comcast.net
COMMENTS	Hello, I've been diagnosed with narcolespy since June of 1993. I had taken ritalin for about 10 years when I finally decided that 12 hours in a day wasn't good enough. I now take provigil and it works great. However, I find myself so much more tired then ever. I'm in my early 30's and I've gained 50 pounds. Being 5' 1" it is real bad weighing 180 pounds. I don't allow this disorder to get the better of me because over the years I realized it really could be worse. I could of been diagnosed with cancer or even aids. So I take each day at a time and realize I have narcolepsy and narcolepsy does NOT have me. Best of luck to those who are down about what they have just learned. Just keep in mind that we are only given what we can handle. I know that having narcolepsy isn't easy but take baby steps and think positive because being negative will only work with the narcolepsy. I will keep this website in my prayers my the Lord bless all those who find and utilize this website. God Bless
DATE	Tuesday, July 4th 2006 - 09:19:13 PM

NAME	Angela
E-MAIL	sillydolphins@hotmail.com
COMMENTS	Melody, The opening letter brought tears to my eyes ... and yet relief to know there are others that have had the same experiences. I am 30yrs. old and for the past two years been working as a Sleep Tech ..... my own experiences with having Narcolepsy w/Cataplexy as well as Sleep Apnea help give me a better understanding of the patients whom I see on a nightly basis ...... my heart goes out to each and every one of them. It is great to find your site and God Bless You!!!!!!!! I am very interested in starting a local support group for Narcoleptics and their families in South Carolina .......... I will let you know how it goes.
DATE	Monday, July 3rd 2006 - 04:21:26 PM

NAME	Angela
E-MAIL	sillydolphins@hotmail.com
COMMENTS	What a wonderful website!!!!!!!! It is so nice to know that I am not alone in my struggles with Narcolepsy ........ I look forward to reading more and watching for updates on this site.
DATE	Monday, July 3rd 2006 - 03:58:15 PM

NAME	Tonya Murphy
E-MAIL	murphy_tonya@yahoo.com
COMMENTS	I just stumbled across this site, and it pretty much does describe my life. I just emailed the link to a few people who have reacted exactly as you described. Hopefully they will finally get it. Of course, I'm typing this around 5 in the morning because I couldn't sleep...
DATE	Friday, June 30th 2006 - 03:13:25 AM

NAME	Rhonda
E-MAIL	gramma2b2@hotmail.com
COMMENTS	I don't know much about narcolepsy, but some of it sounds like what I'm going through. I have excessive daytime sleepiness, but I don't sleep well at night. The Dr.'s can't seem to find out what's wrong. Taking three different night meds doesn't help either. Now I'm waiting for my insurance company to approve Alertec so I can stay awake at work. Any thoughts or ideas to help would be appreciated.
DATE	Friday, June 16th 2006 - 04:34:16 AM

NAME	Tammy Gilliland
E-MAIL	tgldsgirl@sbcglobal.net
COMMENTS	I enjoyed reading your site, I have never talked to another narcoleptic before. I wasn't even sure that there were others out there that suffer from this agrivating disorder. I was diagnosed with Narcolepsy in Nov. of 2004.
DATE	Friday, June 9th 2006 - 04:44:10 AM

NAME	Linda LaPorte
E-MAIL	laporte597@hotmail.com
COMMENTS	Thank you for your input on narcolepsy. I have every symptom of it and go to the Dr. the 13 the of July. I felt all alone in this until I discovered your site.Blessings, Linda
DATE	Wednesday, June 7th 2006 - 05:46:20 PM

NAME	PAM
E-MAIL	LIPSYLADY3336906@AOL.COM
COMMENTS	RE SIGNING YOUR GUEST BOOK. BRILLIANT INFO! PAM ENGLAND
DATE	Saturday, June 3rd 2006 - 03:29:22 PM

NAME	Robb Peterson
E-MAIL	jazzkane@alumni.indiana.edu
COMMENTS	For all those world citizens dealing with narcolepsy in the military, I am hoping to establish a site or support group to help them deal with the shabby treatment they will typically receive. I was lucky to have been in the Air Force in the 70s and I stumbled upon a civilian doctor at Hickam Air Force Base who sent me to Tripler Army Medical Center to be tested for narcolepsy. If he had not been so sharp, I'd probably be among the many houseless veterans here in Hawaii. My work is not done, so I will continue to fight for awareness and fairness for GIs afflicted with this condition.
DATE	Friday, June 2nd 2006 - 08:20:52 PM

NAME	Jane Bauler
E-MAIL	N/A
COMMENTS	I just found your site today. What little I,ve had time to read I love. This is so exciting for me - I'm having trouble typing. I have had narcolepsy since age 11. I was diagnosed at age 16. I am now 33 . To find this site is unbelievable. I've always felt so alone. This really helps!! I plan on telling my Mom and sisters about it. They've also lived with my narcolepsy for the past 22 yrs. Idon't think I can thank you enough for this website. Keep up the awesome work . We need to know we're not alone.
DATE	Friday, June 2nd 2006 - 08:04:51 AM

NAME	Linda LaPorte
E-MAIL	laporte597@hotmail.com
COMMENTS	Thanks!
DATE	Monday, May 22nd 2006 - 07:00:08 AM

NAME	Emma
E-MAIL	extremefbic09@yahoo.com
URL	http://myspace.com/dragonangelblood
COMMENTS	I'm 15 and have had narcolepsy for 2 years. I didnt think there were alot of people out there like me. Ive never talked to anyone like me before. Its cool you made this site.
DATE	Sunday, May 14th 2006 - 05:57:08 PM

NAME	Amy
E-MAIL	Casno17@aol.com
COMMENTS	I am hoping to attend one of the discussion groups but usually I try to be in bed by that time. I have had narcolepsy nearly all my life. I was paddled in 2nd grade for sleeping during a math test. Symptoms then were sporadic and far between. Things aren't so good these days. It seems as if every day is a hope and a prayer that I make it home from my full time job safe. Luckily, I have been high functioning in my life. After being diagnosed and treated I went on to graduate college and work as a respiratory therapist. Narcolepsy has been part of my life for most of it...I'm just glad for the near normal 20 years I had before it became almost a daily ordeal. If anyone would like to email me at casno17@aol.com email conversation is welcome. I am also a single mother. I am blessed in so many ways and tortured in a lot of others but eventually you can learn to moderate the things that make symptoms worse and find new ways of living your life. For anyone struggling...have faith, have hope, and look for the silver lining...even if you have to sew it in yourself!
DATE	Saturday, May 13th 2006 - 09:50:50 AM

NAME	johnny
E-MAIL	vangogh357@hotmail.com
COMMENTS	Melody, I've cried reading your introduction to your website. I even felt more pain in my heart for the rest of your brothers and sisters that are suffering thru this disorder. I'm John from Plano. and I fell in love with my best friend who is suffering from the same disorder. I myself am not a narcoleptic. The only way I can relate or understand is by witnessing the struggle and the toughness that my freind portrays with the rest of the world. Especially with her immediate family, which I unfortunatley hate with such a passion because they ridicule her for being lazy or having lack of motivation. This is her family and I just don't understand why they are so blind inspite all of her efforts to try to make them understand her situation. It hurts me inside everyday when I think about her struggle. She has two wonderful children, ages 5 and 2. And she is a single mom besting all of her family members when it comes to child caring. It's tough on her, but she comes out with flying colors! I learned a lot about parenting from witnessing her efforts. But regardless, it's still a struggle that takes a toll on her whether she admits it or not. I understand and I will always be patient and supportive towards her. It's tough, because I love her soo much and there is very little I can do. I'm grateful to you and your website. I'm going to tell her to check it out, because she needs to know that there are others out there that understand her situation. God bless you Melody and thank you!
DATE	Friday, May 12th 2006 - 02:16:46 PM

NAME	j kubikudy
E-MAIL	udith2@adelphia.net
COMMENTS	I'm in th process of being diagnosed. I's reassuring getting th info & knowing its real. It's been getting worse & worse th past year. Thanks
DATE	Sunday, May 7th 2006 - 11:28:57 AM

NAME	Pat Harden
E-MAIL	PPATHAR@AOL.COM
COMMENTS	THANK YOU
DATE	Wednesday, May 3rd 2006 - 04:35:37 PM

NAME	Shelby
E-MAIL	shelby17331@yahoo.com
COMMENTS	I am a narcoleptic
DATE	Wednesday, April 12th 2006 - 12:52:47 PM

NAME	PAMELA
E-MAIL	LIPSYLADY3336906@AOL.COM
COMMENTS	THANK YOU THIS SITE IS FANTASTIC X
DATE	Monday, April 10th 2006 - 02:39:24 PM

NAME	PAMELA STOCKTON
E-MAIL	LIPSYLADY3336906@AOL.COM
COMMENTS	THIS SITE IS BRILLIANT, MY 26 YEAR OLD PARTNER HAS NARCOEPILEPSY AND FIND IT VERY HARD WHEN HES AT HIS WORSE, LIKE NOW! ITS GREAT TO B ABLE TO READ OTHER STORIES AND TO KNOW YOUR NOT ALONE WHEN YOUR FINDING IT HARD. XX THANKS PAM
DATE	Tuesday, March 28th 2006 - 07:30:46 AM

NAME	Walter E Gibbs
E-MAIL	anwgibbs@cox.net
COMMENTS	Wouldn't it be great if we could give narcolepsy and cataplexy to all of the terrorists, rapists, domestic abusers, etc. What a better world this would be for they would not have the energy, concentration, ethusiasim to carry out their wrongful deeds.
DATE	Monday, March 13th 2006 - 04:55:35 PM

NAME	Richard
E-MAIL	richard.hamel@pwgsc.gc.ca
URL	http://NA
COMMENTS	I was on this site quite a while back and here I am again. Good information, and the stories - they certainly do have an impact when you relate to them in a way that much of them are like words stolen from your mouth. Best regards, Richard
DATE	Wednesday, March 8th 2006 - 12:30:39 PM

NAME	Matt Jinkins
COMMENTS	God Bless
DATE	Monday, March 6th 2006 - 07:39:05 PM

NAME	Katina Choiniere
E-MAIL	katina_choiniere@yahoo.com
COMMENTS	so far i like what i see. i printed out the whole 1st page so that i could show my family and hope for more understanding from them. i'll keep my fingers crossed.
DATE	Saturday, March 4th 2006 - 05:29:36 PM

NAME	Kazzy
E-MAIL	brelades8@aol.com
URL	http://www.sleepdisordersforum.co.uk
COMMENTS	Sleep disorder forum for sufferers to find support, information and friendship. Other topics of interest include the paranormal, debates and fun & chit chat
DATE	Wednesday, February 22nd 2006 - 01:48:13 AM

NAME	bernadette
E-MAIL	bernadette_levesque@hotmail.com
COMMENTS	i too have narcolepsy .so i injoyed reading your thoughts thank you
DATE	Tuesday, February 14th 2006 - 04:23:57 PM

NAME	shelby
E-MAIL	shelbyk70@yahoo.com
COMMENTS	thankyou 4 all this info...i thought that i may suffer from narcolepsy,too. but after reading these stories, i am almost sure that i don't. i appreciate your honesty- and that of your readers- for sharing your stories here. sincerely, shelby g. in connecticut
DATE	Monday, February 13th 2006 - 02:39:32 PM

NAME	christine lorraine d. biscocho
E-MAIL	rainee_day99@yahoo.com
COMMENTS	I really learned a lot from the experiences of people who have narcolepsy.
DATE	Saturday, February 11th 2006 - 02:28:00 AM

NAME	Betty Legault
E-MAIL	betty_legault_22@hotmail.com
COMMENTS	Hi Melody: I just wanted to let you know that I myself have Narcolepsy with Cataplexy, with Severe Obstructive Sleep Apnea. I want to let everyone know that it's no fun having Narcolepsy because having this can cause a lot of problems in your life. For instance, I have fallen down so many times that one time I fell asleep standing up in the bathroom and I fell and hit the side of my head, plus hurting my knees as well. A lot of people don't understand of what we go through of having Narcolepsy. Where I live I don't know if there's an organization for people who have Narcolepsy, just to talk to some one who is going through the same thing. I've only had the Narcolepsy since 1997 but it didn't come through til later in life. Apparently, I was told that I was born with this and it didn't hit me til later in life. Also just to let you know that I'm not too sure about the URL that you are asking for. I wish that I could go on and talk more about having Narcolepsy but there is only so much space to talk on or to write on. It would be really nice to talk to someone else who has Narcolepsy too. I hope to hear from you soon. It was nice to talk to another person who has the same thing as me. Thank you ever so much.
DATE	Friday, February 10th 2006 - 06:26:14 PM

NAME	Gladys
E-MAIL	rlandglnunley98@hotmail.com
COMMENTS	I was diagnosed 3 yrs ago; and have severe Narcolepsy and severe cataplexy. Would like to meet anyone in or close to kentucky. I am interested in starting a support group. Good job on the website!!!
DATE	Thursday, February 2nd 2006 - 05:35:31 PM

NAME	Ryan
E-MAIL	dberanek56@hotmail.com
COMMENTS	Thank you so much for this web site. I have Narcolopsey/Cataplexy and it did a huge number on my life so far, so your site helps me understand that I am not alone. All my love and appreciation to you all.
DATE	Wednesday, February 1st 2006 - 06:16:10 PM

NAME	Laura King
E-MAIL	LK31571@msn.com
COMMENTS	Thank you for having this site. It is nice to know I'm not alone with this
DATE	Wednesday, February 1st 2006 - 03:44:02 PM

NAME	Walter Gibbs
E-MAIL	anwgibbs@cox.net
COMMENTS	All of the letters from undiagnosed narcoleptics makes my heart sad. I am 63 and have had narcolepsy and cataplexy since about 11 years of age. I will post my experience. God Bless you for chairing this site.
DATE	Tuesday, January 31st 2006 - 05:05:26 PM

NAME	Dorothy {aka} ~Sleepy Jean~
E-MAIL	willbreak4muzak@hotmail.com
COMMENTS	What a great thing you've done for all of us Narcoleptics! The fact you muster up your x-tra energy to do this for people is really an unsellfish act! It has helped me a lot! Thank you for all that you do! P.S. If there is anybody from the Kittery Maine,Portsmouth N.H., seacoast are w/narcolepsy and would like someone in your area to talk to, you can e-mail me. I'm also starting a support network on the seacoast because I know nobody w/this illness and I'm tired of feeling guilty and alone!
DATE	Saturday, January 28th 2006 - 09:37:27 AM

NAME	Rachael
E-MAIL	rachemac@msn.com
COMMENTS	I am Narcoleptic. Alot of the time I feel very alone. I don't personally know anyone who also suffers. No one understands not even when they try.
DATE	Saturday, January 21st 2006 - 09:42:30 PM

NAME	Kat (Narcoleptic Nurse)
E-MAIL	katna@wowway.com
COMMENTS	Hi, I've enjoyed your website quite a bit and read that you were considering using Xyrem. I felt the disappointing side effects of some of the other stimulants and the headaches of Provigil. At 500 mg daily of Provigil, I was still groggy at times. I am fortunate that I am now employed as a nurse at a large Sleep Disorders Center and I have daily contact with my personal physician who ordered Xyrem for me. I've been on Xyrem for about a month now and am taking 6 grams per day. I feel better than I have ever felt in my life. My speech is now fluid in stressful conversations, my thoughts come quickly and my memory feels like it is improving. I'm also beginning to lose weight, but I don't understand the pathophysiology of this phenomenon. Life has promise for the first time in 45 years. You have nothing to lose but to try Xyrem. Take care, Narcoleptic Nurse
DATE	Sunday, January 15th 2006 - 06:17:49 PM

NAME	Amanda B.
E-MAIL	mandamusen@msn.com
COMMENTS	Hey Melody! Thought I would just write a little note! I do not have Narcolepsy nor do I know anybody with the disease. I' just a girl, studying Psychology on highschool level, who found great use of your site: Reading almost every single story people have submitted I understand how much you are all suffering: It kindda mad eme realize that this is more than just a disease or a handicap. I will always remember what I've read about you guys and if I ever get into psychology on Uni (which is extremely difficult in Denmark where I live) and become a psychologist I promise you that I will be aware of patients with narcolepsy sympthoms, since it makes me quite sad to read how many have been ill for years before finding out what was wrong. I know this might sound kindda lame, but I kindda felt like writing. It's really choking to read how all of these people had nowhere in real life to find support and understanding, but good to see how they all seem to have found that here. Anyways, during my little research project I've been doing, I saw an article that I, though it is barely more than a note, thought you might wnated to see if you have not already... Hugs, Amanda, Denmark (currently AZ, USA)
DATE	Thursday, January 12th 2006 - 07:20:02 PM

NAME	Anna
E-MAIL	amtrube@hotmail.com
COMMENTS	Thank you for this website. I know now that I am not the only person who goes through this on a daily basis.
DATE	Monday, January 9th 2006 - 04:46:04 PM

NAME	Melody
URL	http://www.cataplexic.com
COMMENTS	DeAnna.. how good to see you!! I hope you get to see this but just wanted you to know that no matter what happens with my website, your letter will always be there. I still remember the first time I saw it.. it made me cry, it was so perfect. I know others have felt the same way.. I have heard from many saying just that. Wishing you the best. Melody
DATE	Friday, January 6th 2006 - 11:38:08 PM

NAME	DeAnna
E-MAIL	ex_x_termite@cox.net
COMMENTS	I am honored. After all this time, my original letter is still on the opening of your website. How wonderful. Thank you. Not too much has changed in the past few years. Still fighting the attacks in the car, had VBG weight reduction surgery that didn't work - I lost 90lbs then gained 40 of it back because the doctor said my decimated metabolism is constantly working against me and I can't seem to figure out how to combat it. I'm on a drug study for the new and improved Provigil - hooray for free drugs! My insomnia hasn't gotten any better either. I'll stay up til 1am or 2am then get up at 7am every day. I still get the bizarre looks when I explain what is wrong with me, the one look I get that bugs me though is when someone actually looks at me like they don't believe me. It's hard to stay awake at work right after lunch....nice and warm, full, quietZZZZZZZZZZZZZ. Anyway, I just wanted to see how everyone was and to tell you how touched and honored I feel looking at your site and seeing my letter right there at the beginning. I still don't know anyone w/N but I found out the N convention will be about 3hrs from my house instead of 22 states away. I'm excited, my husband said if he can get vacation for that weekend we'll go. I can't wait to meet others just like me. I remember recently watching a documentary on the Learning Channel called "Nap Attack" and seeing a poor girl that has severe Cataplexy attacks, thank goodness mine aren't that bad but it was uplifting to see others like me. I kept pointing to the screen and telling my husband, "that's me, that's exactly what it feels like, that happens to me every day!" etc.... Well, my eyes are blurring which means I need to stop typing if I want to finish this without embarassment. Thanks, I appreciate it. DeAnna
DATE	Friday, January 6th 2006 - 08:51:01 PM

NAME	QDogg Richard
E-MAIL	islandcuddling@hotmail.com
COMMENTS	I loves you for helping people . smooches my friend
DATE	Friday, January 6th 2006 - 11:57:15 AM

NAME	NIKKI
E-MAIL	nikkigateley@hotmail.com
COMMENTS	Wow! look at us all! And been feeling so alone and scared, Please can someone fron UK contact me as i would love to chat with someone else with narcolepsy! My love to you all Nikki x
DATE	Wednesday, December 14th 2005 - 01:57:15 PM

NAME	kathryn
E-MAIL	kathrynyaskiw@hotmail.com
COMMENTS	going in on friday to find out the results of my sleep test. i'm a little nervous but i don't have any noticeable cataplexy. i'm always tired no matter how many hours of sleep i get. If i stay active i won't fall asleep during the day. as soon as i get home from work i need at least an hour nap but if i don't get woken up i can sleep up to 4 hours. i get hallucinations somewhat regularly and sleep paralysis just about as often. i also have restless leg syndrome when i'm over tired. i'm just not sure if any of this could be related to my type 1 diabetes. i'm 23. Is there anyone else out there like me who has been diagnosed with narcolepsy? Without the cataplexy i'm feeling very confused!
DATE	Tuesday, December 13th 2005 - 09:49:52 AM

NAME	pamela
E-MAIL	scarletred 63 @hot mail, com
DATE	Monday, November 21st 2005 - 03:22:44 PM

NAME	Darlene
E-MAIL	darlenem_55@hotmail.com
COMMENTS	I have just been diagnosed with narcolepsy..after months and months of testing and misdiagnosis.It is nice to know one is not alone and is understood.
DATE	Sunday, November 13th 2005 - 07:30:23 AM

NAME	todd
E-MAIL	tharring7@yahoo.com
COMMENTS	im glad that i am not the only unlucky bullhead in the world mel. i began symptoms somewhere around 11 or 12 years old that i remember,however early signs were probably at age 9. at that time doctors knew little and teachers said i just didnt care. i battled it alone untill in my early thirtys. one day i was called into school to meet with a counseler about my eldest daughter. times changed since i was in school, no longer is it "they don't care",now it's "we feel they should take ritalin." i threatened a law suit to stop their ideas of help and tried to get her the help i didn't get. no doctor would persue it because she was to young to have such problems. i became the guine pig and went in to find i had acute apnea and hypersomnia. with family history they tested her and meanwhile i had a second test that included the day time. i found i had narcolepsy as well as her having minor symptoms of it. this problem is so much more common than statistics show due to doctors over looking it and bull heads like us not persueing help. your site is awsome and the labor you have put into it is not awsome, but heroic. my friend your labor has given people links to living no lesser than if you pulled a person from a burning building. thank you
DATE	Thursday, November 3rd 2005 - 11:59:41 PM

NAME	Janet Fagan
E-MAIL	gtrinidad@surewest.net
COMMENTS	Thank you for the gift of knowing I am not alone in this world.
DATE	Tuesday, October 25th 2005 - 12:46:29 PM

NAME	michele m hill
E-MAIL	page09112@yahoo.com
COMMENTS	thank you so much for the info and opinions but especially for the feeling of community. Because of reading the messages it turned into a journel entry day...smile
DATE	Thursday, October 20th 2005 - 04:34:25 AM

NAME	CHERYL
E-MAIL	SKUEEEZE11@AOL.COM
COMMENTS	HI MELODY, I AM SO GLAD TO HAVE STUMBLED UPON YOUR WEB SITE. IT WAS BITTER SWEET TO FIND OUT THAT SO MANY PEOPLE HAVE THIS DISORDER. BUT IT WAS IN TURN A JOY TO FIND OUT THAT THEY ARE COPING WITH IT IN A NORMAL SETTING. THANKS
DATE	Sunday, October 2nd 2005 - 06:53:54 AM

NAME	melissa j
E-MAIL	melissa_jirgens@yahoo.com
DATE	Saturday, October 1st 2005 - 04:53:55 PM

NAME	Lynne
E-MAIL	jatillman@alltel.net
COMMENTS	I just started telling people that I have this. I was embarrassed for 17 years. Now that it is worse, I am glad I found all of you.
DATE	Friday, August 19th 2005 - 10:19:12 AM

NAME	Dawne
E-MAIL	TilDawne@aol.com
COMMENTS	Thanks for an informatative and reassuring site for us sleepyheads.
DATE	Sunday, August 7th 2005 - 09:43:37 PM

NAME	Lynn
E-MAIL	teachinlynn@comcast.net
COMMENTS	Thanks Melody and everyone for making this website what it is. Major hospitals are now recommending the narcolepsy network to their patients. I think this is a step in the right direction for being understood. Of course being able to scroll down and find a site like yours is a major benefit! Keep up the good work and don't let the rare and occasional "fellows" get you down. Remember, excessive emotion will bring on attacks. Don't give them the satisfaction!! Lynn
DATE	Sunday, July 17th 2005 - 08:26:29 AM

NAME	kathleen
E-MAIL	kath.s@absamail.co.za
COMMENTS	Wow, did not know so many people had the same problem as i do. my dr use to tell me it is all my imagination etc etc. then i went to a sleep clinic at wits university, it hit me from a side, you have narcolepsy. i go into such deep sleeps and cannot awaken, almost drowned once, i fell asleep on my back, went into a deep sleep and my mouth filled up i could not swollow and almost died. when i fell pregnant in 1995 my mother had to sleep with me cause i had an attack at least 3 time a night. i then tought myself to pinch, kick and scream her awake. i am on no medication as i also have mitral value prolapse. when it hits me i tell myself not to fight stay calm and it passed much easier. i also found that when i take a tab for headache etc the attacks are more frequent. keep well all... kath
DATE	Friday, July 15th 2005 - 10:56:50 AM

NAME	Stacey Marshall
E-MAIL	sjmarshall81@yahoo.com
COMMENTS	Hi. I have very recently been diagnosed with N/C after fighting the symptoms for a little over 10 years. I am so happy to find other people who understand how I feel... this site is a gift. Thanks!
DATE	Wednesday, July 13th 2005 - 12:02:17 PM

NAME	JEANETTE
E-MAIL	harty63@aol.com
COMMENTS	Your site has made interesting reading, I truly feel that I am not alone. I can relate to every single story. I also suffer from epilepsy to which is just an added punishment. anyway thank you. Regards Jeanette :o)
DATE	Saturday, July 9th 2005 - 12:37:57 PM

NAME	Isabel Barrington
E-MAIL	ibarrington@hotmail.com
COMMENTS	Sometimes I feel as if I live in a different world from everyone else, because no one in my life knows what it's like to be me, and live with narcolepsy. If anyone would like to email me, I'd appreciate that very much.
DATE	Thursday, June 30th 2005 - 10:30:25 PM

NAME	Amy
E-MAIL	amykain@avci.net
COMMENTS	We all know there are good days and bad days, I hope this is a good one for you.
DATE	Tuesday, June 28th 2005 - 11:48:12 AM