| NAME | David Edward Wilson | |
| tronadave@gmail.com | ||
COMMENTS |
Narcoleptic since 1950 ... have found a few helpful groups but they lack funding, do not have enough people with energy...like myself. I'll be back with comments later. | |
| DATE | Tuesday, April 21st 2009 - 11:33:19 AM | |
| NAME | Sebastian Benson | |
| Feb 12, 2009 | ||
| URL | http://cville_clips@yahoo.com | |
COMMENTS |
Hi,
Im Turning 18 in april, and i have been diagnosed with Narcolepsy for almost 2 and a half years. I was your normal high school kid.lots of friends,i was on my varsity wrestling team at 145lbs.,got alright grades not the greatest all the time but nobodys perfect. About half way through the year i started to abnormaly feel sluggish or tired.i thought nothing of it mostly cus wrestling had just started,and cuz i normaly was hyper or energetic all my life.it turns out that i needed a physical for that year.as i went to my family Doc, she asked me if i had encountered any thing odd or different latly.well i told her that i felt kinda sluggish,and she anwserd me with well what do you mean exactly? So i told her it seamed like i didnt have as much energy as normal.she told me to try getting a better night of sleep and eat alittle better like nutrition wise. so she passed me for my physical,and i moved on. Well as about a week went on i told my girlfriend at the time that i was feeling a weekness like my knees would buckle out of nowhere,and that i was having trouble like with focusing my eyes and my head would kind bobble.she was quite concerned, and asked me if i was alright.and i told her yea, im fine dont worrie. As another week passed or so i starrted to fall asleep during some of my classes.my teachers asked me "whats up, this isnt you, your normaly preatty attentive during class. i told them i really have no idea what was going on.witch was the truth.all they had to say was well dont do it again.so i keep going on with my day.well as more days went by i tryed to stay awake during classes.that didnt go to well it got to the point that i was falling asleep during all my classes.then my teachers were past letting me off and were just irritated with me.they would ask what was my excuse for falling asleep.and i had nothing to say but i dont know.well my punishment for this was being sent to ISS(In school suspenshion).witch if you dont know is your put in a small room al by yourself and you stare at a wall and do homework. Before i new it i was spending about 3/4 of my day in ISS. My teachers didnt like it to much, the classes i got to attend i was being critisized,being called lazy.one of my teachers along with my vice principle actualy accused my of being on drugs and that was the reason i was tired. still i keept trying to be more alert. It wasent until i was helping a friend during my welding class.well acouple of my buddys were messin around and sumone said something funny.well instatly i laughed and that weekness came over me again.well i tryed to fight it cuz in my mind i thought thhat was the olny way to get better.well as it finally went away and i thought nobody notice. my friend acctually turned and watched me go throught it.as i got over it and said what ya looking at? he had a weird expresion on his face, and he acctually asked dude you better tell me what kinda drugs im on. well this being my friend i said what are u talking bout? he said, man it looked like you had a seizur but standing. well i told him i kinda felt like i had no controle over my body. and he said like you were paralized. and i said well yea kinda.and he kinda thought nothing of it and we went on working. That night i came home and told my mom about it.she basicly freaked and said were going to the doctor. I went back to my doc.,as i told her wuts up, she asked me if i was still tired all the time. and i said yea and im falling asleap during classes.she suggested a sleep study. Before i new it i was at a Neuroligist setting up to get a sleep study and blood work done. After my sleep study and blood work, the guy said that he was almost 100% sure i had Narcolepsy.and he also instantly put me on ritiln and told me to come back in two weeks. I came back in two weeks and he asked how did the ritiln work?and i told him i feel no difference. still tierd all the time and weekness in my body.he told me this was called cataplexy.well then i asked if im gunna be able to drive,cus i was turning 16 in 4 mounths. he told me no i was probably never going to drive. and then he told me to stay on the ritiln and make an appointment in 5 mounths. well nither me or my mom lked this.so we went to my family doc. and told her i have Narcolepsy and im gunna need a new referal to a better doc., she asked why. and we said we felt unwelcome to the other doctor and he wasent trying to help. she said no problem, ill find a new one thats close.she sent me to a clinic called Prvea. and to a doctor Named Dr. Andrews.he asked why did you come to me? we told him that my old doctor gave me ritiln and then told me to come back in 5 mounths later. Instantly he said well thats not right.then he intoduced himself to us and also told us he specilizes in Narcolepsy and he also has sleep apnia himself. so he kinda know wut i was going throught.then he looked at my info and said i coulda told you that you have narcolepsy just from your blood work.he told me there are 4 possible geans of narcolepsy,and that i had all four.he also said that im his youngest narcolepsy patient ever out of the 14 he already had.also he said to tell you the truth i didnt like wut i seen when you came in. he could just tell sumthing was wrong. At the time i had no idea wut narcolepsy was nor did my mom.he exsplaned it in his terms and noticed we had blank faces. then he told us in lamens terms and didnt stop till we both understood him.he was a pretty friendly guy. so since then ive been going to the same doctor. He has me on 2 200mg of Provigil, witch took my doctor to acctually wright a letter saying that if they do not accept the perscripion for me that he could be sued for Malpractice and lose his job, we had this problem cuz provigil is olny tested on people over 18 and i was olny 16 at the time. He also has me on 3 25mg of Imipramine witch is some kind of antidepressent witch helps with my cataplexy for the most part.Dr. Andrews informed me that narcolepsy is lifelong, and time may get harder and it may get some what better. also he said that my medication may aslo change. i tell you what if i didnt have my meds i'd be right back to the way i was.evan though i'll never be who i was 3 years ago,i know now after reading some of these storys i now know that im not compleatly alone. iF YOU WOULD LIKE TO KNOW MORE EMAIL ME AT http://cville_clips@yahoo.com | |
| DATE | Thursday, February 12th 2009 - 02:28:03 AM | |
| NAME | Robert Miller | |
| robertjmiller68@charter.net | ||
COMMENTS |
I have been looking for something just like this | |
| DATE | Monday, January 26th 2009 - 10:46:28 PM | |
| NAME | stop sleep apnea | |
| Stop Sleep Apnea | ||
| URL | http://www.stop-sleep-apnea.info | |
COMMENTS |
Great commentaries by E.C. Knight...I had no idea how devastating narcolepsy truly is. You've done a great service to all who suffer from narcolepsy and for those of us who want to learn more about it. | |
| DATE | Friday, November 21st 2008 - 08:11:37 PM | |
| NAME | LP | |
| LP | ||
COMMENTS |
Hello, I was diagnosed with narcolepsy several years ago when I was just a teenager. I am now 24 and I have been thru so much since then. I have been receiving SSI benefits for almost a year and and a half now, which I thank God for because now I have a Medical card which enables me to afford my Provigil. I do have a part time job but cannot physically work full time obviously. My doctor said I had passed the tests for narcolepsy with flying colors and some times esp. when I'm not on my meds I feel like I have lost all power to do anything. I am so tired I feel like I am drunk. The entire time I have been experiencing this disorder I have experienced cataplexy, sometimes severe. I have been in the hospital so many times I can't remember, and I have been fired from several jobs due to this. I feel like this has literally destroyed my life. Although I have never formally been diagnosed with OCD i know that I have it, but I am too embarrassed to see a doctor over it. I have the most horrible, racing and uncontrollable thoughts anyone could imagine. I feel as though I cannot control them at all. Sometimes they even make me cry bc I am so ashamed and horrified that I would think such thoughts. It's like they are not even my own thoughts. For the past several years I have been very depressed. I couldn't go to college after graduation even though I graduated with Honors bc I couldn't drive or hardly function half the time. I went for a long time without any medication of any kind. Then 2 years ago on Oct.11, 06 my brother who was only 28 was killed in a car wreck. I didn't think I would ever be able to move on. The situation which I know to be OCD has really messed with me alot. Not only the thoughts, but the constant checking of everything, standing in Wal-Mart half the night because I can't decide which lipstick to buy, not bc I am a female but bc I obsess for a hour which one will work. Certain things has to organized specifically, and it takes me 20-30 min to make my bed bc every thing has to be completely even to the inch. I have tried to live a normal life the best I can, I even done modeling for a while, but this problem has caused me to have very low self esteem bc I have convinced myself there has to be ways to make myself look better and feel better obsessively. Another major problem this OCD has caused is contant obsessive worrying over EVERYTHING. I make myself sick over worrying so much about the smallest things. I will have very repetitive thoughts over something uncontrollably til I feel like I will vomit. My cataplexy attacks has had an enormous impact on my life. Sometimes I felt like I was dying, I didn't know how to stop them. I have heard paramedics say they had never seen anything like it, it scared them to death. But my problem now is a couple months ago I had an attack at the doctors office. The paramedics were very cruel and said very mean things about me. They stuck an IV in my neck to give me narcan to make me vomit bc they thought that I was high although there was a doctor telling them what was wrong with me. They said first that I was faking it to get attention. Since this event, I have worried so much that they were right. I know I have cataplexy, that's not what I'm saying. But I have obsessed over this so much it scares me to think that maybe I have overreacted at times. I can think of a few times when this has happened when I feel like I did have control over it but I chose not to. There has been times when I was very depressed and so worried that I feel like I made myself have an attack bc I was scared and I needed out of the situation, and I knew I would only make myself sick if I didn't pass out. It's almost like I wanted to have an attack and get it done and over with. I feel so sick with these thoughts in my head and I don't know how to get rid of them. Noone I know has any idea that this is going on. Noone even knows about the OCD or any of this. Everyone just thinks that I am perfectly fine and happy, all but the fact of my brother dying, they all know what a tremendous effect that had on my life. I feel like such a horrible person, it's like sometimes I feel like "I don't know, maybe I was faking a couple times" then other times I think "No I wasn't" why would I do that. I do have narcolepy cataplexy very much so. I have been thru everything to determine that. But what if there were times when I used it to my advantage bc I was scared and so worried about something I made myself have an attack. I feel like I should tell someone this bc I am obsessing over this so much bc I feel like such a bad person. and I keep getting this horrible thoughts that I have cheated the government some way even though I was definately approved for SSI bc of doctors and tests I've been thru. I feel like if I ever said anything about this I would go to jail, for false information, even though I never gave a specific time or date for anything. But I feel like they would see it as I've lied in some way and punish me. This is why I joined this forum bc I wanted to get other's opinions. I don't know any other way to explain what I am going thru. The fact is I can't work alot, and I can't function hardly at all without my medication. I need this SSI and my medical card. I feel like I need to be on something else as well like Zoloft for depression and OCD. I am so ashamed over all of this. I am such an honest person, I am just so scared that I have done something wrong, and I have really been praying about all of this. Sometimes I think I am overreacting then other times I make myself sick bc I feel so bad. I have felt like a couple times during an episode I have had to make myself not laugh when someone is trying to get me out of it, but I kinda feel like it's so they won't think I am faking or anything like that. At the time when this has happened I felt like I was doing nothing wrong, but it was something my mind and body was telling me to do like when I shake alot when I am experiencing one of these. I can't make myself stop shaking. I know I am doing it but I can't stop. and then I have read about people with episodes who does laugh during them bc they can't help it. I can't speak at all during the episode but sometimes afterwards it's like I don't want to speak. I don't want anyone to talk to me or be around me. like stubborness or something. Someone please help me...I feel like I am losing my mind. | |
| DATE | Monday, September 29th 2008 - 11:14:21 PM | |
| NAME | Christopher Ingram | |
| URL | http://crossed23@aim.com | |
COMMENTS |
I have lived with a diagnosis of narcolepsy for a year now. Im 26 years old. I drive a semi and work for pepsi. Its an extremely physical job and doctors said I would have to quit and almost had to, because of the extreme tiredness I felt. Provigil has changed my life and I can now continue work as I have for the last 7 years. I still get down from the complications of the condition and this site just helps me. Sometimes i just get to feeling very alone, even my wife cant always understand. Thanks for the site its great | |
| DATE | Monday, September 15th 2008 - 05:25:23 PM | |
| NAME | Kate | |
| URL | http://d.wick@sympatico.ca | |
COMMENTS |
Certainly is a lonely condition, very misunderstood and frustrating. Does it get worse with age? or is it age makes it seem worse? I'm with you totally about the screwed up metabolic system and weight gain. | |
| DATE | Sunday, September 14th 2008 - 11:24:02 AM | |
| NAME | Dick Goaliebull | |
| hughrgoaliebull@yahoo.com | ||
COMMENTS |
I love it! | |
| DATE | Thursday, July 17th 2008 - 04:08:44 PM | |
| NAME | Katie in NH | |
| perelandra@mac.com | ||
COMMENTS |
I was diagnosed back in 1968 after having trouble with boring classes for about six years. I still find that people dont understand my disability and I'm viewed as being lazy or impolite when I struggle in meetings or fall asleep in the sermon. I have an elderly friend who is the only other narcoleptic I know personally and she was thrown out of college because they thought she was partying too hard. I have been fortunate that I have been able to work as an art teacher but it still frustrates me on a daily basis. I was very interested to read Melody"s comment about her weight because that is a constant struggle for me. When I am tired I want to eat, my mind is all fuzzy and I know I should just lie down. I get this stupid craving that makes me think that if only I ate something sweet I would not be sleepy. Of course that isn't true but I eat anyway. I am tired of pretending that I don't have a disability. I am glad there are sites like this one so I don't feel so alone. Anyone in NH or nothern MA? I've been looking for a support group. Thanks Melody . | |
| DATE | Tuesday, April 22nd 2008 - 07:09:11 AM | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| Arpalmer01@aol.com | ||
| DATE | Sunday, June 24th 2007 - 12:57:27 AM | |
| NAME | Jimmy | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| babs2364@yahoo.com | ||
COMMENTS |
God bless ...I am tired. | |
| DATE | Monday, April 16th 2007 - 12:15:42 PM | |
| NAME | Terry Noble | |
| royaltdn@peoplepc.com | ||
COMMENTS |
Will write Melody. | |
| DATE | Tuesday, April 3rd 2007 - 09:47:52 PM | |
| NAME | Mike Notarnicola | |
| 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 | |
| llbruns@insightbb.com | ||
COMMENTS |
Thank you, thank you, thank you. | |
| DATE | Monday, February 19th 2007 - 10:11:03 PM | |
| NAME | Holly Delana | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| kamrysmom @yahoo.com | ||
| DATE | Monday, January 8th 2007 - 02:52:05 PM | |
| NAME | Betty Swanton | |
| 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 | |
| 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 | |
| tae1719@gmail.com | ||
COMMENTS |
Thank you! Thank you! Thank you! | |
| DATE | Saturday, December 30th 2006 - 01:41:11 PM | |
| NAME | Rachael MacSwain | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| laporte597@hotmail.com | ||
COMMENTS |
Thanks! | |
| DATE | Monday, May 22nd 2006 - 07:00:08 AM | |
| NAME | Emma | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| PPATHAR@AOL.COM | ||
COMMENTS |
THANK YOU | |
| DATE | Wednesday, May 3rd 2006 - 04:35:37 PM | |
| NAME | Shelby | |
| shelby17331@yahoo.com | ||
COMMENTS |
I am a narcoleptic | |
| DATE | Wednesday, April 12th 2006 - 12:52:47 PM | |
| NAME | PAMELA | |
| LIPSYLADY3336906@AOL.COM | ||
COMMENTS |
THANK YOU THIS SITE IS FANTASTIC X | |
| DATE | Monday, April 10th 2006 - 02:39:24 PM | |
| NAME | PAMELA STOCKTON | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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~ | |
| 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 | |
| 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) | |
| 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. | |
| 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 | |
| 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 | |
| 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 | |
| islandcuddling@hotmail.com | ||
COMMENTS |
I loves you for helping people . smooches my friend | |
| DATE | Friday, January 6th 2006 - 11:57:15 AM | |
| NAME | NIKKI | |
| 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 | |
| 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 | |
| scarletred 63 @hot mail, com | ||
| DATE | Monday, November 21st 2005 - 03:22:44 PM | |
| NAME | Darlene | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| melissa_jirgens@yahoo.com | ||
| DATE | Saturday, October 1st 2005 - 04:53:55 PM | |
| NAME | Lynne | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| 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 | |
| NAME | Margie | |
| bacnbac@warwick.net | ||
COMMENTS |
I am really glad I found this site! I have had narcolepsy for about 10 years now. I read your description of your hypnogogic hallucinations in the note you wrote about comedies. I have had similar hallucinations and they've really had a bad impact on my self concept. Basically one of my fears was the main topic of my dreams and after a while of having the dreams they almost feel like real pat occurances instead of just dreams. I guess you can say I've been hurt a million times worse in my dreams than i ever have been in real life.
Amyway, thankyou for this site! It helps me to feel more normal! | |
| DATE | Saturday, May 28th 2005 - 04:46:34 PM | |
| NAME | DeAnna Chaney Davis | |
| delinda-karkad@sbcglobal.net | ||
COMMENTS |
Heh Melody! Remember me, the RN in Lubbock,TX with Narcolepsy who got fired in Dec.2003 who filed charges with EEOC. Well I still can't say a lot (GAG Order still in effect) but just wanted to let you know that it seems things may be looking up!! I'm trying not to get excited yet but I wanted to let you know how things are going. (Remember please don't publish on website just yet. Thanks!)This is my new email address. I hope to have good news soon!!! Take Care and hope all is well with you. I'll email soon 'cause I found an amazing help for me!!!!! I feel soooo much better, and it's NOT DRUGS!!! Bye for now,DeAnna Chaney Davis. | |
| DATE | Monday, April 25th 2005 - 07:02:40 AM | |
| NAME | Vickie Buckley | |
| ladybuckley@hotmail.com | ||
COMMENTS |
Hi I just found your website. Your story sounds like my story. I've been in a legal battle for my job with the Georgia Department of Labor my employer for two years now. I need some help like yesterday. I am 44 and was diagnosed in 1986.
Vickie Buckley | |
| DATE | Tuesday, April 19th 2005 - 01:28:48 PM | |
| NAME | Teresa | |
| harleytah@comcast.net | ||
COMMENTS |
I am so glad to have found a place where I can visit for support and information from others who truly know how I feel. | |
| DATE | Saturday, March 12th 2005 - 09:40:07 AM | |
| NAME | Carol McIntyre | |
| RomansTenvs910@aol.com | ||
COMMENTS |
Thank you for this information. I was just diagnosed with narcolepsy only 4 days ago. My medicine is not working and I am very discouraged right now...but I know the Lord will work everything out! It's amazing to know that other people are going through the very same thing I am. Thank you again for opening your heart.
| |
| DATE | Thursday, March 10th 2005 - 09:43:29 AM | |
| NAME | Debbie | |
| dsholme@aol.com | ||
COMMENTS |
at last...i have been looking for a web sight with people like me with narcolepsy...i am so glad you started this sight...thank you.. | |
| DATE | Thursday, March 3rd 2005 - 07:15:34 PM | |
| NAME | Sebastien Bolduc | |
| seabrooke@videotron.ca | ||
| DATE | Thursday, March 3rd 2005 - 06:24:00 PM | |
| NAME | Tiffany Webb | |
| twebb15110@yahoo.com | ||
COMMENTS |
I just wanted to say were all strong and will fine a way to beat this | |
| DATE | Wednesday, March 2nd 2005 - 10:58:07 AM | |
| NAME | Sarah Penycate | |
| spenycate@hotmail.com | ||
COMMENTS |
hi, love the site ive been diagnosed for two years now and am just beginin to lead a "normal" existance thanks to progivil. Its nice to know that theres people out there who know how i feel and the realisation that its real. Feel free to email me. | |
| DATE | Monday, February 28th 2005 - 05:54:55 AM | |
| NAME | Emily | |
| emily.slatton@gmail.com | ||
| DATE | Thursday, February 10th 2005 - 05:20:45 PM | |
| NAME | tooch | |
| homestar_army | ||
COMMENTS |
i am doing a paper on narcoleptic people. this site was perfect! | |
| DATE | Sunday, February 6th 2005 - 12:28:03 PM | |
| NAME | Jim Formanek | |
| jimforma@foxvalley.net | ||
COMMENTS |
Glad I found this website. I am a severe narcoleptic diagnosed in 1983 while in my early 30s, after a few years of wondering what was happening to me. I'm 57 now and have no problem sharing my experiences. Feel free to email me. I'll drop in on a chat session soon. Does anyone stay awake long enough to find them helpful? | |
| DATE | Saturday, February 5th 2005 - 10:43:33 PM | |
| NAME | kim | |
| kim7461@comcast.net | ||
| DATE | Saturday, January 22nd 2005 - 11:25:33 AM | |
| NAME | Anita | |
| ag93x89ay@verizon.net | ||
COMMENTS |
I'm a senior citizen who has just been diagnosed with Narcolepsy after so many years of complaining of "being tired", and feeling envy for those people who appeared awake while I had a fog over my brain. I have had sleep paralysis, but never knew that it was a symptom. If it hadn't been for the hallucinations which began last Spring and which made me think I was losing my mind, I never would have gone to the doctor. I am on Provigil now, and it's a whole new world! Although, even 200 mg of that blessed medication had its hands full keeping me awake during a recent band concert! | |
| DATE | Friday, January 21st 2005 - 07:24:06 PM | |
| NAME | robin hanzelka | |
| imabot@earthlink.net | ||
COMMENTS |
Hi.
This is the first narcoleptic place I could find, that looked helpfull. I was diagnosed two years ago, and since 1083 I've had multiple sclerosis, also, So my fatigue and this new frontier of Look I'm sleepy, and leaving a living room full of people with no apologies are now for the past two years, give finally the reason for my giving in to the naps. I have been on ritalin, and recently upped to 20 mgs four times a day, and still have to take at least one nap. M.S. I do injections of Avonex, and no new lesions, so I'm okay, but God bless you all, and hope to talk to some one soon and compare notes, and learn from your experiences with narcolepsy, thank you, Robyn... | |
| DATE | Thursday, January 20th 2005 - 01:46:19 PM | |
| NAME | Brenda Stewart | |
| calieyes01@aol.com | ||
COMMENTS |
I dont have this but my father was just told by his doctor that he has Narcolepsy.It's not bad enough my father broke his hip last year and that kept him pretty much down and now we find out he has this.I just lost my mother his wife 5years ago and his doctor told me that his health and age he will be 85years old MAY.25 that none of the meds may work for him.I cant even begin to tell you how many nights I have cryed myself to sleep cause I dont know what to do for him.Alot of people tell me to let him know that I know hes tired and it would be hard but we will all be ok to go ahead and go on but I just cant let go of him.THANKYOU FOR LETTING ME SIGN YOUR GUEST BOOK...P.S. I HOPE I DIDNT TAKE UP TO MUCH SPACE WITH THIS LETTER.SORRY IF I DID | |
| DATE | Tuesday, January 18th 2005 - 07:51:10 PM | |
| NAME | Debbie | |
| sleepydeb@rogers.com | ||
COMMENTS |
This is a great site. I am from Ontario Canada and there are not too many support groups out here. I need a Pen pal that has narcolepsy. LOL It is good to read about other peoples experiences and realize that you are not alone. Thank you | |
| DATE | Saturday, January 15th 2005 - 08:08:26 PM | |
| NAME | sharyn Wilson | |
| sharynew@hotmail.com | ||
COMMENTS |
Hello,
I too have Narcolepsy/Cataplexy I was diagnosed when I had my daughter back in 1993. I have been on a roller coaster ride thru down below and back. My doctor of 10 years, who I trust with every breath I take is now moving. I am scared but I wanna join your group in hope of sharing my successes with medication and in turn having someone who can relate to what I am going thru. Take care! God Bless You! Sharyn | |
| DATE | Thursday, January 6th 2005 - 07:22:06 PM | |
| NAME | ed flores |
| DATE | Monday, January 3rd 2005 - 03:34:13 PM |
| NAME | Rick Darrough | |
| r77@earthlink.net | ||
COMMENTS |
Fist time in a few years ive look around at Narco sites. Nice place I see.Hope you find a cure.LOL..I know the feeling..Ive had narcolepsy and cataplexy for many years.Ive been on SSI for about 10 years now.. | |
| DATE | Tuesday, December 21st 2004 - 08:24:04 PM | |
| NAME | Dave | |
| ClemGram@fmtcs.com | ||
COMMENTS |
Just diagnosted at the age of 45. Started last year with Sever OSA, that only solve 60%. In further test MSLT, I only have preliminary results, Neurologists sumary indicated, 'Ideopathic Hypersomnia that we will be treating as Narcolepsy.' Self expressions of people that have Narcolepsy give me little doubt he would have been safe to call it Narcolepsy. I have a long way to go yet to get it under control. Thankful to finally know the cause of many problems, personal, social, professional, and financial! | |
| DATE | Tuesday, November 30th 2004 - 06:12:42 PM | |
| NAME | Katie | |
| katie17mca@yahoo.com | ||
COMMENTS |
I am writing a paper for my biology class and I just wanted to hear first hand what it is like to have to deal with this every day. I did not want to put my focus purely on the scientific aspect of narcolepsy. | |
| DATE | Wednesday, November 17th 2004 - 05:16:58 PM | |
| NAME | Sarah | |
| sjh364@hotmail.com | ||
COMMENTS |
I was diagnosed with narcolepsy in january of 2004. I was 16 then but now am 17 and have learned very quickly how to deal with narcolepsy. I also have gained a few nicknames including Narc and Narco and the newest one from my dad, Mitch (when I cataplex, my face twitches.....twitch/mitch.) I am usually a A/B student but noticed my grades going down to C's and even a D in my first hour class. We first noticed my overly tiredness in Jan. '03 and didn't get around to the doctor until April '03 when I had blood tests done to check for diabetes, thyroid, hemoglobin, mono, etc. They all came back negative so we thought I was just a teenage girl going through a growing stage. The summer passed because I was going to bed at midnight and waking up at noon everyday. School came back and I dozed off like normal in my classes but it was worse. I would fake sick to the secretaries at school just so I could go to the sick bed and sleep. My parents grounded me and made it manidatory that I was in bed every night at 9 pm. For a Jr. in high school to be in bed every night at 9 pm was difficult. I had to leave basketball games and was forced to drop out of cheerleading because I couldnt keep up. In Nov. '03 I saw a doctor and he was a specialist in sleep apnea; he didnt think it was apnea but narcolepsy. Narcolepsy....a new word in my vocabulary that I would hear over and over for the rest of my life. We made an appointment with a specialist but couldnt get in for 4 months until he realized how strong my condition was, he agreed to see me in Jan. '04. The day I saw him, he said he was almost positive that I had narcolepsy just from my story. I happened to get into a overnight sleep test and also a series of naps the next day. My first nap, I fell asleep in 23 seconds; 2nd,1:44 seconds; 3rd, 5 min. 12 seconds and 4th nap, 3:44 for an average of 1 minute and 46 seconds. He said the average narcolepsy patient is about 5 minutes compared to the average human of 20 min. How relieved I was that it was finally figured out! I couldn't wait to get back to school and prove to everybody that I wasn't crazy or lazy. I now am on ProVigil. I take it at about 8 in the morning and I start to get sleepy around 4 p.m. I go out alot at night and drive home, a ride about 20 min. I've fallen asleep before and almost hit a mailbox. I've caught myself slamming on my brakes because I thought I was going to hit a semi which really was lights of a city about a mile ahead. I've had sleep paralysis 2 times and it is very scary for me. I've also hallucinated a U-Haul truck with deer jumping over it a few times. (i've only admitted that for a few people, who now...probably think i'm nuts) I was wondering if anybody on ProVigil have breathing problems? I have gained some breathing problems since I've been on ProVigil, mostly like I feel like my lungs can't expand to their full capacity. If theres any teenagers out there that would like to talk, feel free to email me or if anybody from MN, ND, WI. | |
| DATE | Sunday, November 14th 2004 - 06:37:00 PM | |
| NAME | Sarah | |
| sjh364@hotmail.com | ||
COMMENTS |
I'm 17 and got diagnosed with Narcolepsy in January of this year. What you said on your main page couldn't be more true! Especially about people knowing about narcolepsy from "rat race" and "duece bigalow" and everything else you said. it was all so to real. Thank you, its refreshing to know that you're not the only one going through it. | |
| DATE | Sunday, November 14th 2004 - 05:48:49 PM | |
| NAME | Susan Palmer | |
| hazfun63@msn.com | ||
COMMENTS |
I am having a hard time dealing with this | |
| DATE | Saturday, November 6th 2004 - 01:18:02 PM | |
| NAME | Nova | |
| starrybruin@yahoo.com | ||
COMMENTS |
Wow... THANK YOU. Reading the letter on your home page made me laugh and almost cry at the same time --- everyone has already said it and I concur: HOW WONDERFUL TO KNOW THAT SOMEONE ELSE KNOWS HOW I FEEL!! So affirming. I have lived with narcolepsy for about 6 years - diagnosed at age 18 before college - and this is the first time I have ever really "met" someone who could so completely relate to me and my condition. Thank you, thank you, thank you!! | |
| DATE | Saturday, November 6th 2004 - 05:04:54 AM | |
| NAME | Jeannine P | |
| BikiniJeannie@aol.com | ||
COMMENTS |
I just had a sleep study done last week and found out yesterday (9/30/04) that I do have narcolepsy. I have had this condition for about 4 years and was told "if I'd just go to sleep at night, you'd feel better in the morning", or "what's wrong with you that you fall asleep so fast," various comments that made me feel self-conscious. I could sit down to read a book or listen to my children read to me and be asleep in 5 seconds flat, I would think my eyes were open when they weren't, think I was awake, when I was asleep, and if I think hard enough about it, I am sure there were many times I grocery shopped in a catatonic state of sleep, running into displays, etc. I have had two minor (thank God) fender benders in the last year, which I attributed to the "other" guy. Maybe not, now with the diagnosis.... I always thought of narcolepsy as that disease where people drop like a light during the day for no reason, now I see no reason why this seems so humorous to me, as I used to fall asleep before closing my eyes. I was a student up until graduation (I completed nursing school with narcolepsy, believe it our not!), and I can't tell you how many times, I was nudged awake, kidded, or felt actual fear of falling asleep in class (I did, actually). I started to sit in the back of the class, so no one would see me.
I was given Provigil and today was my first day of taking it. I'm taking 200 mg. and I sat down to study at computer a bit, and fell asleep, like usual for a good hour. Face down in the key board... Does this drug take time to build up in system or should it work right away? WOuld love to hear from anyone. I'm 42, by the way, mother of four kids age 15, 11, 8, 7. JP of Granger, Indiana | |
| DATE | Friday, October 1st 2004 - 02:57:44 PM | |
| NAME | Cecilia Fossey | |
| pisces@ntlworld.com | ||
COMMENTS |
I was having a bad day but after visiting your site I dont feel so outcast and alone now. Reading the stories I can put myself in their places as I could tell the same stories that they have written. The person who finds it difficult to get up in the morning and now finds that if he takes his medication and then goes back to sleep and then finds when he wakes up again he can start the day ok is spot on because I do exactly the same. But I find that I still fall asleep roughly three times a day and have no energy. It is embarrasing especially when something is funny a joke or such when my legs go from underneath me and everyone rushes to me and ask if im alright because when I say yes I just fell asleep they look at me as if im mad. Upon being on your site I have just checked my driving license and I see that narcolpy is mentioned on it and I did not know it was on there, so I will have to find out about that. Mind you I havent been able to afford a car for the last 5 years. Any way keep up the great job you are doing. Thank you | |
| DATE | Thursday, September 2nd 2004 - 03:38:53 PM | |
| NAME | Jane Beckman | |
| JnLzBeth926@aol.com | ||
COMMENTS |
i am almost totally sure i have this disorder... Narcolepsy and Cataplexy... i have been to the Vanderbilt ER.. and was seen by the leading Neuro at Vanderbilt Clinic... he is scheduling a sleep study at their sleep clinic.. i woullove to hear from anyone about this disorder and what it is like to live with and what can be done for this disorder... i am not currently driving.. i want to be back driving soon .... very soon... do you think i will? anyone with this disorder who would like to give me some input ... and their solutions... please contact me.. Jane... JnLzBeth926@aol.com | |
| DATE | Wednesday, August 18th 2004 - 03:48:55 PM | |
| NAME | monicab | |
| chompers_893@msn.com | ||
COMMENTS |
Melody,Your article was wonderful. As I read the article, I'm thinking,wow I could never find the words to describe whar it really felt like. On top of the diagnosed narcolepsy, I have been also diagnosed Adult ADD!! What aq pair!! I hope you know what ADD is,if you need a basic knowledge of the condition. There are many web sites for Adult ADD if you want to explore them. People think I am crazy, That I made up these symptoms, I wish that was all it was. These conditions defantly are very real. i get so frustrated because Not too many people know the conditions. My husband says he wants to understand, but never researches ton find out what it is all about. You don;t know hoe many times I have been extremely embarressed by falling asleep out of know where. It just happens! ADD is also a very hard thing to make people that it too really is a condition. I'm trying my bst to make an understanding of ADD sands for Attention Deficit Disorder. It jto really exisist. Your crazy if you believe init. I get very frustrated when the words do not come out like the way I mnean them to be . In a short review kthis ios what ADD is like It has the same things happen but more of them you know you can get there but it's like swinning against a tide You;ll get tgere but it tales longer to get there./Sometimes you have to be there to relate Does anybody know any State aid jor diability programs to get help of maybe sometimes I fell LIke I shsould stay off the road and to keep away from people, sio I don't have to deal with it. IS THERE A WAY TO WORK AND collect partial disabilyt???If anyone can help me I'm all ears. Thank you for your knowledge.
MonicaB | |
| DATE | Monday, August 16th 2004 - 11:21:10 PM | |
| NAME | Carol Ch'ng | |
| carolannchng@aol.com | ||
COMMENTS |
I have just found your site and find it very reassuring I have a 8 year old daughter who is diagnosed with Narcolepsy and suffers with very bad Cataplexy, in the UK there is very little support and we did not know what was wrong with our daughter for almost two years - we hope that the treatment she is now receiving will stop the condition getting any worse, the medication does not control the cataplexy but does have an effect on her sleeping the provoxil (perhaps spelt wrong) enables her to stay awake, she has improved on her grades which dropped dramaticaly and she is trying to control her cataplexy, I hope that she will get better even though we are told there is no cure. | |
| DATE | Wednesday, August 11th 2004 - 11:42:53 AM | |
| NAME | Katie | |
| katie.weems@whiteman.af.mil | ||
COMMENTS |
Thanks for the information it really helps. And thanks for supporting your troops, WE really appreciate it. | |
| DATE | Tuesday, July 27th 2004 - 01:17:42 PM | |
| NAME | patti dupuis | |
| pattid2@hotmail.com | ||
COMMENTS |
I find your site to be so helpful, not only for the one's who have this disorder,but for the one's who love them. My x-boyfriend,father to our son and thro the yrs. have become best friends,(soul mates, if you will).
I read a few stories, and it is as if my friend could have written it. This site helps me help and understand him better, It breaks my heart to see him struggle with this.He is very intelligent, very kind and holds down a very good job, but every day he struggles with this disorder. Thank you for starting-up this wonderful site.You are a God-send. Gentle hugs patti | |
| DATE | Tuesday, July 27th 2004 - 09:58:16 AM | |
| NAME | SUSAN MONTGOMERY | |
| sue.windwalkers@worldnet.att.net | ||
COMMENTS |
I can so relate with a lot of what you wrote describing your experiences. I too have narcolepsy, although we're not allowed to call it that, as I didn't pass the MSLT. Luckily for me, I have a doc who believes what I tell him, and gave me the "offical" diagnosis of idiopathic hypersomnolence syndrome. Same symptoms, same treatment. We are still in the process of findiing the right combination of drugs to treat me. Provigil, alone, isn't enough, so I also take ritalin, + welbutrin, lexapro, & right now klonopin(he wants to get me off that asap).Look forward to exploring your web-site more, when I'm more awake, ha! Sue | |
| DATE | Thursday, July 22nd 2004 - 08:02:11 PM | |
| NAME | Tonya Bingham | |
| STEPH7BINGH@AOL.COM | ||
COMMENTS |
I found this site about two months ago and began to cry in the middle of the library. I have had problems with narcolepsy for the past 18 years and wasn't diagnosed until 10 years ago. I have all of the really interesting symptoms that attract attention quickly. I get to be drunk without the hangover or the ridiculous cost of alcohol. I get to lay around and do nothing a lot because I can't move when I wake up,(usually about 45 minutes or so). I have cataplexy, I sleep standing up with no support at all, I have hallucnations...legally :), I get to see more horror movies than I ever wanted to see when I dream and I, unfortunatly, get to be the star, (I never did want to be an actress), and I get a bonus! I am fortunate enough to have the added pleasure of having panic attacks about the coming events of sleep, that result in hyperventilating, paralysis, crying uncontrollably, then not breathing at all. I get all the same advise I'm sure every narcoleptic gets and it's frustrating. I'm really glad to know that there are so many people out there that really understand exactly how I feel. I would like to know if there is any advice you can give about how to deep a job. I'm married and have a 16 year old son and a 12 year old daughter. I'm very independant, by nature and past necessity, and am very depressed from not supporting my family and contributing to my houshold more than i do. My family is really good about understanding that I could fall asleep at any time and not be there for them, but it really bothers me more than they could know. I'm the punchline of many jokes within my family, as well as my insomniac sister-in-law, but it's all in fun, nothing really cruel. I have never gone to a chat room and am a little nervous but really need to talk to people that understand and may have advice. I take 400mg of Provigil (200mg morning, 200mg evening) and I just began taking 25mg Prozac to help with panic attacks and some other sleep related things. It's working so well that in the past 4 days I have slept probably about 60 hours. HELP ME!!! | |
| DATE | Wednesday, July 21st 2004 - 05:39:25 PM | |