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Back To: Narcolepsy - A Sleep Disorder  | Our Experiences

10/11/01 18:53:47 GMT

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10/11/01 03:03:11 GMT

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Dear Melody: I probably should wait until I am in a better state of mind before contacting you (so this needs be short & sweet), but I am just so eager to tell you how wonderful you are!! Thank you for this site. Thank you so so much. J.H.

10/11/01 02:09:20 GMT

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I really learned something new about Narcolepsy. People are portraying narcolepsy as a joke, but in fact it isn't. I feel sorry for those who have it, because it doesn't sound easily copable.

Month of September signings inadvertently deleted by server

08/20/01 05:51:41 GMT

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I just wanted to take a second to say that I am very glad that you have developed this wonderful website. I have just recently found out that I have Narcolepsy. I trying to come to terms with it, since I have been fighting for years to prove that I am not just lazy or overweight or crazy. I have joined the Narcolepsy Network, and recieved a lot of information from them. I am only affected by many sleep attacks throughout the day, hallucinations (sometimes), and memory/concetration problems. I haven't (knock on wood) had any cataplexy as of yet. I am hoping that I never do, but knowing about it in advance, I hope that I can at least be prepared for it, if it ever happens. Again, thank you for taking the time and energy to put together a informative website for others to learn more about this disease.

08/16/01 01:38:47 GMT

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HI THANK YOU I WILL BE BACK TO THIS SITE OFTEN .. I HAVE NARCOLEPSY AND DEPRESSION. NOW MY EYESIGHT IS GOING PRETTY FAST AND I CAN'T WALK ACROSS THE YARD TO THE CAR WITHOUT BEING OUT OF WIND NEED TO REST ... LAST WEEK I HAD A ANXIETY ATTACK AND MY BOYFRIEND WAS SCARED TO DEATH WHEN I DIDN'T ANSWER HIM IS THIS FAMILIAR TO ANYONE.. I AM NOT SURE I AM GOING TO BE ABLE TO DO THE KIND OF WORK I USED TO CAN'T STAND FOR VERY LONG WITHOUT EXHAUSTION.. LET ME KNOW IF ANYONE ELSE HAS THE SAME PROBLEMS.. THANKS AGAIN IT IS GOOD TO KNOW I AM NOT ALONE... DIANE

08/15/01 06:43:00 GMT

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Hi, I just found your website. It's nice to know there's people out there who understand what you're going through. Keep up the good work! I'll visit often.

08/12/01 00:58:41 GMT

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I tip my hat to you for creating a new, open, and more comprehensive site for persons with narcolepsy.

07/25/01 12:58:43 GMT

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This looks like a great website and I am looking forward to spending time here. I am a Lic. Psychotherapist and I have what I call first cousin to Narcolepsy. It is the Idiopathic CNS Hypersomnia and it is treated the same way N. is. I depend on your info on meds and probems concerning the illness. I am looking for comments on Provigil and comments on mixing Provigil with Effexor. I will be back here when I have more time. THanks for your good

07/21/01 14:31:13 GMT

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Thanks for all the hard work you've put in on your site. I am narcoleptic, work full time and have had the disorder for at least 30 years. I will be back and am interested in your chat site and talking with others who have this disorder. I am also interested in the up to date info as I agree, most physicians know little about the disorder. I have moved 3 times in the last 5 years because of my job and each of my 3 new doctors disclosed that they had not had a patient with this disorder previously. Thanks again and I will connect soon, Leslie

07/04/01 03:08:09 GMT

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So very glad to find this site..I look forward to visiting often.

06/30/01 03:10:27 GMT

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Hi I am hoping to find answers to some questions very soon. We think my husband has a form of narcolepsy. He is 22 and we are both scared to death. He falls asleep while driving, and talks all the time in his sleep. We are waiting to hear from Mayo clinic to get into the sleep disorder clinic...in the mean time we got him a cell phone and we have been talking him to work, (20 minutes away from home)

06/27/01 22:20:49 GMT

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I recently found you and your site is very informative. Was being treated for migraines and discovered narco instead.

06/26/01 18:58:07 GMT

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LOVE YOUR SITE

06/24/01 22:41:41 GMT

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As someone who has had this for more than 4 decades, I would first advise others to read as much about it as possible. Within a few months you will know more about it than most doctors. If you believe you have it and you have medical insurance, go to Stanford University Sleep Clinic or another institution with a great reputation. I did an overnight stay and was wired from head to foot. You will find out more about your sleep patterns in this short period than by any other method. This will also be the best ammunition you can have if you are discharged from work due to your disability. To the young people out there. You are extremely lucky to have at least the beginnings of medical knowledge about narcolepsy available. I had to tell my physician that I had narcolepsy and he had never heard of it. I lived with it for 20 years before I finally met someone who also had it. Good Luck and stay as active as you can.

06/19/01 02:20:44 GMT

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06/18/01 05:47:56 GMT

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06/16/01 23:29:34 GMT

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When my daughter was in her mid-teens we knew something was wrong. Many doctors later we came up with a diagnosis of "hypoglycema". No matter how strictly she kept her diet, she continued to get worse. She began having hallucinations and thought she was going crazy. When she drove, she would go for miles that she knew she must have driven but couldn't remember. She was paralyzed in the morning and collapsed for no apparent reason. She was 23 and living in Ireland having broken up an engagement because she didn't want to get married in the crazy state she was in. She went to a doctor for her "hypoglycema" and he suggested she had narcolepsy. Her first response was to run out of the room crying. But she went back and he sent her to a sleep clinic in Dublin. They said her case was one of the most severe they'd seen. She has now been on Provigil and some other meds ( for cataplexy etc ) for over 2 years. Just a few months ago she took on a part-time job. It's still up and down but at least she knows what she is dealing with. When people say "narcolepsy...you mean people who just fall asleep " I want to cry for her; it's so much more. We have seen her suffering. The doctor at the sleep clinic told her that sleep deprevation is a form of torture, and she had gone many years sleep deprived.When I read the comment of the "fellow sufferer" I was quite disturbed. Hooray for her that she is doing well, but she must have no concept of the severe symptoms and the empathy of a rock. I know how much my daughter wants to work, to feel that she can do the things a healthy 25 year old does. And now, sometimes she can. But sometimes she can't. My heart goes out to all sufferers! Diana Netzer

06/16/01 23:17:25 GMT

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I feel so lone with this. And my boyfriend and friend don't understand And I don't understand the things I'm going throw..

06/10/01 14:32:06 GMT

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I was diagnosed with cataplexy a year ago after having surgery for Arnold Chiari Malformation at the age of 30. I am a wife and mother of a beautiful 6 year old girl. I work full time and I am looking for help dealing with the emotional side of narcolepsy.

06/06/01 08:13:46 GMT

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hi, i'm thirty eight. i hate narcolepsy.i have it so bad i am in r.e.m. sleep in 1min-1 1/2 mins. i used to feel 25 now i feel 105.

06/04/01 19:00:50 GMT

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Thanks for a wonderful site it's nice to know that I am not alone with my disorder.

05/24/01 06:14:27 GMT

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Thank you Melody for creating this website. I have never been able to get in touch with other Narcolepics and it feels good knowing that I am not alone in the world.

05/17/01 16:19:48 GMT

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My best friend suffers from narcolepsy, and it's been hard on us both. Thanks for the way informative website! I've added it to my favourites and I'll be sure to be back. You're doing a great job. And... thanks :o)

05/15/01 23:00:01 GMT

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I am so happy to have found your site. I believe I could possibly have some form of narcolepsy. And reading your stories & viewing your site helped. Thanks

05/15/01 01:09:26 GMT

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THANKS

05/11/01 20:26:59 GMT

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Wonderful site and so happy to find it. Just knowing you aren't alone helps.

05/11/01 00:36:10 GMT

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Anyone out there?

05/07/01 23:58:51 GMT

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What a great website! Reading all of the personal stories an the posts really make me feel not quite so alone. Gread job!