Welcome to my Guestbook Archives Page 1 July 2000 thru April 2001
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Back to: Narcolepsy - A Sleep Disorder or Our Experiences


Name: Ron
Email Address: ettrick@sympatico.ca
Date: Apr 26 2001 12:25 Website Title:
Hi Melody and everyone else out there with Narcolepsy. Welcome to the club! I must be one of the senior members by this time. I was born in 1930 and started showing the symptoms when I was 17 (1947) but was not diagnosed until 1980 - that's 33 years of knowing that something was wrong with me but no one able to give me an answer! I sometimes think that fate has dealt me a pretty rough hand but when I look around there are many people with a lot rougher hand than mine. So I am almost 71 - that's 57 years of living with it - the cataplexy which started out as a nodding of the head is now much worse and more frequent and each episode is much longer, even when medicated. However, as I said before, I could be a lot worse off - so I just try to keep smiling and hope that the latest research will eventually provide medication that will eliminate the problem. Best Wishes - Ron.


Name: joyce
Email Address: jbrowne@dol.net
Date: Apr 25 2001 17:09 Website Title:
resently diagnoised with Cataplexy Narcolepsy in 99
Would love to talk to others like me


Name: Patricia Brie
Email Address: patbrie@aol.com
Date: Apr 24 2001 11:30 Website Title:
I have recently had a sleep study done and they think I have this problem. I haven't seen the doctor yet and I am just trying to find out all I can before I go so I can ask a lot of questions. Just checking some of the sites out to find out what exactly it is. Thanks, Pat


Name: sue
Email Address: Anderson@utma.com
Date: Apr 15 2001 20:37 Website Title:
I am doing a research paper on narcolpesy and I found lots of useful information from your page and your links. Thanks for your help


Name: BECKY SMITH
Email Address: BSMITH@AOL.COM
Date: Mar 22 2001 19:07 Website Title:
MY SON IS 18 YRS OLD AND HAS NARCOLESPY. WE FOUND OUT TWO YEARS AGO.


Name: michelle
Email Address: wcoats@ptsi.net
Date: Mar 17 2001 18:55 Website Title:
WANT TO LEARN ALL I CAN ABOUT N AND C


Name: Daniel Pennington
Email Address: Not Supplied
Date: Mar 11 2001 11:25 Website Title:
It was nice to se that I am not the only one with my problems. I really enjoy being able to relate with people with the same problems as myself. Thank you for starting this website.


Name: GAYLA TALLEY
Email Address: Not Supplied
Date: Mar 2 2001 12:42 Website Title:



Name: Connie Walling
Email Address: cwall89104@aol.com
Date: Feb 25 2001 16:49 Website Title:
I've known that I've had narcolepsy since 1981. At first I was diagnosed as having MS. I had joined a MS support group and the other people in the group were surprised when I told them that I had narcolepsy. I know that I've had it since 1973. I was in the study for Provigil before it was approved by the FCC.

Name: Carrie
Email Address: CarriePski@aol.com
Date: Feb 16 2001 14:21 Website Title:
Good Work! Some stories are so sad and we all struggle through so much! But, like others I've found your website validating. One person mentioned the use of XTC, as a possible cause, I wonder about the use of

 

Name: Kelli-Ree Flores
Email Address: woodrufffire@hotmail.com
Date: Feb 15 2001 18:24 Website Title:
I have recently been diagnosed with Cataplexy after having 9 rounds of stitches in the past year. I also have Fibromyalgia that causes daily migraines and my Cataplexy seems to triggered by pain. Would like any advise available. Thanks


Name: Connie Larsen
Email Address: Conilarsen@aol.com
Date: Feb 14 2001 20:30 Website Title:
I have had narcolepsy since high school . Sometimes it has been a real struggle but I have managed to cope. Now I need help and I feel like I have hit a brick wall! Perhaps I will find out about disability and drivers license issues through this connection with others who are coping with this disability. Thanks!


Name: Bernadette Kellner
Email Address: bmk_40@yahoo.com
Date: Feb 11 2001 14:10 Website Title: None yet
I am very relieved to see other people have the same problems and I am not alone in my trials.


Name: Terry (RED)
Email Address: HDfaster@aol.com
Date: Feb 2 2001 13:42 Website Title:
I have been diagnosed with narcolepsy for 4 years now. Thanks, it is nice to see that there are sites like this out there for support and information. I am a biker and like to travel long distances on my Harley so staying awake is high on my priority list. Thanks again.


Name: Margaret Davis
Email Address: margaret.davis@dfas.mil
Date: Feb 1 2001 14:05 Website Title:
Thank you!


Name: Machel
Email Address: alamachel@aol.com
Date: Jan 31 2001 01:01 Website Title:
I have recently been diagnosed with Narcolepsy. It is a relief to here other people's stories. I am currently trying different medications with my doctor until I am able to stay awake and control myself when I laugh!


Name: Marie Hays
Email Address: marierhays@aol.com
Date: Jan 28 2001 21:13 Website Title:



Name: Melody Zarnke
Email Address: cataplexic@aol.com
Date: Jan 22 2001 09:16 Website Title: Narcolepsy - A Sleep Disorder
Now that my friend, Ernie, has been so nice as to thank me for my website, I feel it is time for me to thank all of you for writing to me and for generously sharing your stories with all of us. I appreciate all of you very much and I know that we have, in one way or another, helped other narcoleptics to deal with this disorder. A special thanks to Ernie for his contributions and for being an all around good guy. Thanks everyone.----Melody


Name: ERNIE KNIGHT
Email Address: nosferatu416@yahoo.com
Date: Jan 21 2001 15:25 Website Title:
I have, on many occasions, thanked Melody in private E-mails for this incredible website.Now I would like to make a PUBLIC thank you to to the caring, wonderful person who created this website.
ERNIE KNIGHT


Name: weestar2001
Email Address: weestar2001@yahoo.co.uk
Date: Jan 19 2001 20:54 Website Title:
please get back to me my brother is going to jail and allbecause of narcolepsy

 

Name: weestar2001
Email Address: weestar2001@yahoo.co.uk
Date: Jan 19 2001 20:54 Website Title:
please get back to me my brother is going to jail and allbecause of narcolepsy


Name: Kelly Reinig
Email Address: mamaofboys3@aol.com
Date: Jan 17 2001 12:07 Website Title:
I'M REALLY GLAD TO SEE I AM NOT THE ONLY ONE THAT FEELS LIKE THIS. IT HELP TO KNOW IT JUST NOT IN MY HEAD AND I'M NOT JUST LAZY. I GO FOR MY SLEEP STUDY NEXT WEEK AND REALLY EXCITED ABOUT GOING. I WOULD LIKE TO READ SOME SUCESS STORIES, FOR WISHFUL THINKING.


Name: Carol Wenner
Email Address: Welopejo73@aol.com
Date: Jan 14 2001 16:43 Website Title:
 


Name: Tom Sanders
Email Address: Not Supplied
Date: Jan 13 2001 05:30 Website Title:
I've had Narcolepsy since my late teens, I am now sixty two years old. I put in 30years with the phone company doing a variety of jobs. If I stay away from sugar and carbohydrates I function a lot better...


Name: Sharline
Email Address: jully4000@yah.oo
Date: Jan 2 2001 00:32 Website Title:
About eight years ago I found out that I had Narcolepy. I went to about five doctors to find what was wrong. This one doctor though it was in my head.She put me on depression pills. I went back to her and told her I was'nt take the pills no more because it just made things worst. She sent me to WVU. and they found that I had it. I'AM still trying to find everything thing out on it.


Name: loyce kolacek
Email Address: loyce@bcni.net
Date: Dec 27 2000 23:08 Website Title:
 


Name: Tina
Email Address: Dilly825@aol.com
Date: Dec 13 2000 21:24 Website Title:
My physician ordered a sleep study done on me. My symptoms to him were, inability to concentrate, memory loss, and just plain apathy. He was concerned about sleep apnea because my tonsils, adnoids and entire airway system has a smaller


Name: Scott
Email Address: RMNSEN@AOL.com
Date: Dec 10 2000 11:07 Website Title:
I was diagnosed narcoleptic several years ago by my family physcian but I'm going through more thorough evaluation presently. I've already had a blood sample taken to check for a maker gene which many narcoleptics have and will be going to a sleep study in the next 3 weeks. I would like more information on the maker gene and genetics.


Name: KEITH BROSKY
Email Address: broskyk@mail.nih.gov
Date: Dec 4 2000 11:04 Website Title:




Name: allison
Email Address: allieajc@aol.com
Date: Dec 2 2000 10:18 Website Title:
I am a nineteen year old who was diagnosed with narcolepsy about 5 months ago. This site is encouraging to know others are going through the same things I am.


Name: Rhonda
Email Address: Rhonda042@aol.com
Date: Dec 1 2000 04:48 Website Title:
As a mother of a l4 year old diagnosed with Narcolepsy 2 years ago, I have found your site to be an excellent source of information and support. I have sent this site to my son and it has been a godsend to him to learn other people go through the same things as he does. As a parent,one of the hardest parts is watching your child be viewed as lazy and irresponsible from people who do not understand. Thanks for educating all of us!


Name: KIM DUFFY
Email Address: KDBLKBELT@aol.com
Date: Nov 26 2000 06:44 Website Title:
hi,just found out I have narcolepsy


Name: Christi
Email Address: ngtowl@mindspring.com
Date: Nov 26 2000 01:32 Website Title:
I am a nursing student that just wants to thank Melody and the rest of you for your openess and willingness to teach those of us not afflicted with this terrible disorder all about it. As health care workers it is vital that we are sensitive to our patients and what they are going through. Thank you for sharing!


Name: Linda
Email Address: Not Supplied
Date: Nov 20 2000 17:14 Website Title: redhead
Would like to talk to anyone having family member diagnosed with narcolepsy. Have 20 yr. old son, just recently diagnosed, whose tired of being tired and would like to talk to some who may be going through the same thing. We are in Northern California and it would be great just to know there are people locally (or anyone , just to talk to!)


Name: Rosalind Herold
Email Address: grocerybag@aol.com
Date: Nov 14 2000 17:27 Website Title:



Name: Julie Esty
Email Address: jaesty@btinternet.com
Date: Nov 12 2000 15:42 Website Title:
I would be interested to know from other sufferers about how they cope with or without work, and any problems that narcoleptics have come across, in regard to receiving state benefits (in the UK).


Name: Crystal
Email Address: bbackside23@aol.com
Date: Nov 10 2000 15:40 Website Title:
Hey


Name: Rachel
Email Address: james_kale@yahoo.com
Date: Nov 9 2000 22:03 Website Title:
Thank you for your efforts and concern.


Name: Jamie
Email Address: Brat2417@aol.com
Date: Nov 8 2000 21:54 Website Title:
I've had narcolepsy for years, as do a few relatives on my dad's side. I was diagnosed two weeks ago & just started my meds. I'd like to hear from anyone currently being treated, or looking for treatment.
Name: Cheryl Sarver
Email Address: Not Supplied
Date: Nov 2 2000 20:28 Website Title:
Daughter of A California Narcoleptic - I would love to chat with any of you! Please e-mail any time

 

Name: robert
Email Address: Not Supplied
Date: Oct 31 2000 20:50 Website Title:
This, my first visit to your site has been very informative. I have narcolepsy accompanied by cataplexy. Although I've recently changed my medication to provigil, I believe that Dexedrine may have worked best for me. It also controlled my cataplexy. Ritalin and provigil does not.
Maybe I'll join your group soon and write more. Thanks.


Name: A.J.
Email Address: eboni4uwow@cs.com
Date: Oct 31 2000 05:14 Website Title: Narcolepsy
I too have this strange and tiresome disease
called Narcolepsy! I am so tired of being tired;
there no resemblance of the life I once had or at
least thought I had. I'm interested in forming a
group of monthlly meeters in the Atlanta area.
Interested? Please send a e-mail and when I finally awake I'll be happy to respond.
 
Name: larry huelsman
Email Address: l-l-huelsman@msn.com
Date: Oct 19 2000 11:35 Website Title:
 

 

Name: carmel
Email Address: The auntiemel!@aol.com
Date: Oct 16 2000 02:16 Website Title:
I am so thankful that all of you have taken the time to contribute to this great site. I am a recently diagnosed narcoleptic and can relate to much of what has been relayed. I have been sleepy, lazy, spaced -out, forgetful, irresponsible, and just plain exhausted most of my life but thought nothing of it until about a year ago things worsened. I had trouble staying awake at work and especially while I was driving. My eyes were always red and sore and I had trouble staying awake in an evening chemistry class and found it incredibly difficult to focus on the homework assignments. At first I was told I had learning disabilities, then Attention Deficit Disorder. It was the psychiatrist I saw for a diagnosis of the ADD that quizzed me and made the determination that narcolepsy might be a possibility. Provigil has been a great help to me and I can only hope that it's benefits will continue. I am overlapping with Ritalin as necessary but have not found any significant relief from the 5mg dose that I tried. I need it for driving. As of yet I have not experienced the cataplexy that I have read of and I have no problems with nightmares.I do have trouble with depression from time to time and have experienced sleep paralysis many times over the years. Most of us deal with the depression, I am sure, as we have difficulty living up to our potential. My eyes still hurt and I've had a great change in my vision for the worse . At night the Provigil is worn off and I am exhausted and have no patience again. Most of my weekends are spent recuperating from my workweek and I have a minimal social life. I am soo tired of being tired! Thankfully, I have great support from my partner and my doctor. Others just don't understand.An interesting side story is that I have a sixteen year old daughter who for many years has suffered numerous aches and pains and has headaches on a daily basis. Some are cluster migraines for which her doctors have found no cure as of yet. She also sleeps a lot and I think more and more that she also is narcoleptic. A long list of pain relief meds are being tried. When I was diagnosed narcoleptic, I thought to suggest it to her neurologist. He wants her to attend a sleep clinic before he will even consider it. Can you believe this? After all the serious meds with serious side effects that they have had her on? According to my doctor, ther are few, if any, side effects from Provigil. I haven't had any. Is there anyone who has? Can anyone recommend a good sleep clinic ? We live in California. Please contact me. Thanks for sharing.

 

Name: rachel
Email Address: Not Supplied
Date: Oct 15 2000 20:29 Website Title:
i was on here because i was doing a report on narcolepsy for my bio class


Name: Angelique
Email Address: Qange@aol.com
Date: Oct 10 2000 14:25 Website Title:
I was diagnosed approx 3 yrs ago. I am on Ritalin, as I have kidney problems and the newest medication upsets them. I just had an annual checkup and was told the blood work was abnormal for the liver test. They are running the test again. Does anyone know of liver complications w/ritalin usage? Thank you for making this website, it is nice to know I am not alone....

 

Name: Susan
Email Address: Rscloud23@cs.com
Date: Oct 4 2000 23:21 Website Title:



Name: jules skene
Email Address: Not Supplied
Date: Oct 2 2000 16:15 Website Title:
I also have narcolepsy and have found this page very useful and will visit soon


Name: Cyndi Szulczewski
Email Address: tannabird@aol.com
Date: Sep 18 2000 21:38 Website Title:



Name: Bonny Robertson
Email Address: Not Supplied
Date: Sep 14 2000 09:29 Website Title:
Just wanted you to know that I read your website and it has helped me understand better the daily living situations in which you face. This is an excellent site - congratulations.


Name: Tuesday Robinson
Email Address: Not Supplied
Date: Sep 2 2000 00:07 Website Title: hotmail
I really enjoyed what i read .I to i'm a narcoleptic and i'm only 23 years old and trying to get disability and don't know how.If you can give me any kind of information i would really appriciate it. thank you Tuesday Robinson


Name: Rhonda Queen
Email Address: fourqueenz@aol.com
Date: Sep 1 2000 22:01 Website Title:
Just wont to say thanks and please keep it up!


Name: Colleen
Email Address: Not Supplied
Date: Aug 15 2000 02:51 Website Title:
Originally posted on Jul 7 2000 12:46
I was diagnosed with narcolepsy 3 years ago. they believe I probably have had it since I was an adolescent. I now am 35 years old and just got my drivers license back after losing it for almost 2 years. I am always interested in what others like myself are going through, do they have the same symptoms? sounds to me like many others are worse off than me. I'm just tired all the time and lack of energy, which is very hard for me because I have always been a very energetic person. Now for the last few years of what I feel is a very young life I am always wanting to rest. I also am on the ritalin and imipramine for (cataplexy) like so many of you. It helps quite a bit but nothing helps if you're body is just wanting to shut down.
I feel for each and everyone of you it is not an easy thing to be dealt with, but I look at it as we are not going to die from this, and as long as we can get the people we love to understand our situation we will make it. Everyone hang in there there is hope we just have to find it!!

 

Name: Hildegard Perry
Email Address: NesterHperry@ms.com
Date: Aug 15 2000 02:50 Website Title:
Originally posted on Jul 6 2000 13:55
Happy to have finally found a web site for Narcolepsy. I am 75 years old and have been diagnosed with a


Name: Melissa
Email Address: Missybeth1@juno.com
Date: Aug 15 2000 02:48 Website Title:
Originally posted on Jul 5 2000 19:12
Melody: Thank you for your great website! I'm not sure but I think I have narcolepsy. I haven't worked up the courage to see a doctor who is a sleep specialist, which is pretty sad because I work for 23 doctors and three of them are sleep specialists!!! I'm just so tired of hearing comments like


Name: Debbie
Email Address: Tru4me10@aol.com
Date: Aug 15 2000 02:46 Website Title:
Originally posted on Jun 26 2000 21:34
hi... i fall asleep during the day especially when i am driving,but i was just diaganosed with osa .could i also have narcolepsy?


Name: Diana
Email Address: Sayinit1@aol.com
Date: Aug 15 2000 02:46 Website Title:
Originally posted on Jun 20 2000 18:39
Really good website. Will come back and visit again when I have more time. Diana, N, HH, SP but WOC thank heaven.


Name: larry
Email Address: larryboy/pattyjo@aol.com
Date: Aug 15 2000 02:46 Website Title:
Originally posted on Jun 19 2000 13:18
just saw a neurologist a couple days ago to find out why i keep falling down. he thinks it might be cataplexy, but have not had any tests yet. with out warning I just fall striaght down or to the right. I get up almost emediately, usually with a confused look on my face and have a hard time recalling what I was talking about. I dont know if I have this but reading others info,it sounds close


Name: Sammy
Email Address: ford_1@qconline.com
Date: Aug 15 2000 02:46 Website Title:
Originally posted on Jun 16 2000 14:22
I am in the process of much testing for cataplexy narcolepsy. I am gathering much info off of the net and various other places for my neurologist. Man am I glad to find this stuff, I know I am not crazy (the collapsing) I now know it is not what everyone else does. Keep sharing , Thanks Sammy


Name: Deb
Email Address: dozeydeb@home.com
Date: Aug 30 2000 16:12 Website Title:
I have been diagnosed with narcolespy about 4 weeks ago. I would love to hear from people who are going through what I am going through.


Name: Sarah Aulwes
Email Address: sgirl15_2002@yahoo.com
Date: Aug 30 2000 13:50 Website Title:
This is a nice website. I am looking for information on narcolepsy for my psycology report. Have a nice day! :)


Name: larry huelsman
Email Address: l-l-huelsman@msn.com
Date: Aug 27 2000 20:19 Website Title:
 


Name: Melissa Boone
Email Address: ymb@carolina.net
Date: Aug 27 2000 17:17 Website Title:
 


Name: larry huelsman
Email Address: l-l-huelsman@msn.com
Date: Aug 26 2000 21:51 Website Title:
Diagnosed with narcolepsy at age 45. Probably had at least 10 years prior. All symptoms. First falling cataplexy at age 45, followed by diagnosis shortly thereafter. A year of trying every drug known. unlimited amounts of dexedrine.anti-depressants, up to including psychotic drugs such as lithium. Results-strapped in wheelchair to keep from falling out, Could not walk, communicate, or be around my children. Sight or sounds of them resulted in complete and total continuous cataplexy.. Spent all my time dreaming, hallucinating, floating around room, and then----went to sleep lab and tried some kind of new drug. funny sounding name, gamma hydroxybutarate. Went to bed, took one dose,three hours later, another. I wake up, open my eyes. there stands my wife. I look at her and smile. Nothing happens. I don't feel funny. I'm not going out, Sometings different. I should have been paralyzed. I sit up . Stand. I can do it. The next 15 years, I lead a nearly normal life. Wean myself off the drugs. takes a year or more., I now only take GHB and a mild tranquilizer at bedtime (helps with the bad dreams). A true miracle. My daytime sleepiness is reduced and contollable with a couple of 10 minute naps. Still must be careful with laughter and the kids, but can hold the grandchildren and lead a relatively normal life. Pray that some day soon this miracle will be available to all of us. Larry

 

Name: Tammie Peet
Email Address: ex28pt@aol.com
Date: Aug 15 2000 03:05 Website Title:
Originally posted on Jul 28 2000 15:18
I too, have narcolpsy. I was always told be co-workers that I was just lathargic(sp). I went in to see the doctor because most of my friends thought I was depressed. I was treated for that and didn't feel any better. I then went to a sleep specialist,locally, and he said that this might be it. Although I can give you a pill to make you stay awake during the day, you will have this for life. I am doing just fine. I am taking Provigil daily. I don't get that overwelming feeling to fall asleep. I have been told that I look more awake. That my eyes really shine more. I hope that this continues to help as I have read that over time, some of the drugs lose there effect. Thanks for the web page. Tammie


Name: Kristen
Email Address: Not Supplied
Date: Aug 15 2000 03:04 Website Title:
Originally posted on Jul 24 2000 19:14
I was diagnosed with narcolepsy about a year ago. I do not have cataplexy. I am grateful for people sharing their stories. I'm eager to learn more about this disease.

 

Name: Rita K. Rudloff
Email Address: statcohb@aol.com
Date: Aug 15 2000 03:02 Website Title:
Originally posted on Jul 21 2000 12:10
I was just diagnosed in January, 2000 with Narcolepsy with Cataplexy. What a relief to finally have a doctor tell me there is a name to what I have. Now that I am under treatment my days are better but still do not sleep well at night. Hopefully that too can be helped. I would like to join a support group in my area. Do you know of any in Huntington Beach, CA.?

 

Name: Crystal
Email Address: Not Supplied
Date: Aug 15 2000 03:00 Website Title:
Originally posted on Jul 17 2000 19:48

great new updates.

 

Name: carol
Email Address: CAROLGUR@AOL.COM
Date: Aug 15 2000 02:59 Website Title:
Originally posted on Jul 16 2000 22:45
I'm really glad I found this site after years of telling doctors I sleep to much and being treated with everything from litium to


Name: Jill
Email Address: Sylvia8781@aol.com
Date: Aug 15 2000 02:58 Website Title:
Originally posted on Jul 16 2000 02:49
This site is great! It's good to know that there are others out there with cataplexy. I would love to hear about other people's sypmtoms, stories, and prescription recommendations. Feel free to email me at the above address.


Name: crystal
Email Address: bbackside23@aol.com
Date: Aug 15 2000 02:55 Website Title:
Originally posted on Jul 15 2000
Thank you for this very important tool to learn through. I haven't been dx yet but will be soon.


Name: Beverly Pope
Email Address: Not Supplied
Date: Aug 15 2000 02:53 Website Title:
Originally posted on Jul 8 2000 15:47
I'd like to post but not today, it's not alway's easy to talk about but like the other fellow, when I get on a roll, look out. I'm 59, can tell you about my sleep-walking trip's when I was little, started having trouble in my teen's, big time and in my 20's, all h___, broke loose. My regular screen name is beverlyjean@aol.com and people call me