1. Narcolepsy.com Home Page Online version of patient, researcher and physician newsletter. http://www.narcolepsy.com/

Free online news about narcolepsy for patients, physicians, and researchers You'll need the Adobe Acrobat Reader to view items marked with a red star . Get the Reader here . (free) Drug List Substances used for treating narcolepsy Humor and occasionally wicked satire Cartoons by Dr. Kraski Narcolepsy On-line Discussion exchange email with patients, family members, etc. Newsletter article reprints Free on-line access to key newsletter articles. GHB Being investigated as a new treatment - especially for cataplexy Clinical Trial Sites updated 6/2/01 Clinical trial description added 6/3/01 Books and Reviews Multi Purpose Link to [Get email notices when we add new articles or take positions on public policy issues (including Legislative threats to treatment)]. Please take a look at this as a means to advance our mutual interests. Link to Sleep Home Page Extensive coverage of sleep and sleep disorders including links to sleep related resources. Please report site technical difficulties to Web Mistress.

2. Living With Narcolepsy A site dedicated to narcolepsy and the people who live with it, including a description of symptoms, tips for coping with the disorder, treatment options, sources of help, and links to research and sleep disorder sites. http://expage.com/page/livingwithnarcolepsy

Living With Narcolepsy Going through life in a purple haze I sleep – for a while – two or three hours – then a dream – no – a nightmare seizes me in its grip, I know full well that I am lying down and that I am asleep... I sense it and I know it... and I am also aware that somebody is coming up to me, looking at me, running his fingers over me, climbing on to my bed, kneeling on my chest, taking me by the throat and squeezing... squeezing... with all its might, trying to strangle me. I struggle, but I am tied down by that dreadful feeling of helplessness which paralyzes us in our dreams. I want to cry out – but I can’t. I want to move – I can’t do it. I try, making terrible, strenuous efforts, gasping for breath, to turn on my side, to throw off this creature who is crushing me and choking me – but I can’t! Then, suddenly, I wake up, panic-stricken, covered in sweat. I light a candle. I am alone. Guy de Maupassant from his novel "Le Horla" Hello! Welcome to my place. Well having a web page is new to me, but I thought this one was well worth the effort. Now, lets get a few things straight. I am Not a health professional, but Narcolepsy and I are old friends, well, ok, maybe not Friends, but we have lived together for more than 20 years, 22 to be exact. A lot of you who visit this page may have had it alot longer, or maybe you have just started experiencing the symptoms of this disorder. Whatever the case, I am glad that you are here and I hope that this page will contain some helpful insights and information to help you deal with your disorder.

3. Narcolepsy Research Project - University Of Pennsylvania Flyer for research project looking for narcoleptic volunteers. http://www.nursing.upenn.edu/Narcolepsy/

Narcolepsy "Imagine falling asleep while at the wheel waiting for a green light, or at work, as happened to my patients. Excessive daytime sleepiness is often the most disabling symptom of narcolepsy and the most difficult to treat. The goal of my research is to find better ways to control this symptom.." Ann E. Rogers PhD, RN Associate Professor, School of Nursing University of Pennsylvania Narcolepsy is a chronic neurological disorder characterized by excessive daytime sleepiness and sleep attacks. Other symptoms include brief episodes of muscle weakness or paralysis, dream-like images when falling asleep and disturbed sleep at night. Narcolepsy effects equal numbers of men and women and occurs in all racial groups. This sleep disorder usually develops during the late teens or early twenties and continues throughout the individual's life. Early diagnosis and appropriate medical care are critical for reducing the adverse effects of this disorder. With adequate medication and support from their teachers, employers and families, most patients can enjoy a near-normal lifestyle. Unfortunately, many patients remain undiagnosed and undertreated. If you have questions or comments, please

4. Narcolepsy Association UK (UKAN) The homepage for narcolepsy Association UK UKAN a registered charity. http://www.narcolepsy.org.uk/

Narcolepsy Association UK (UKAN) UKAN Home Who Are We? Application forms Request Info ... Brochures Narcolepsy Syndrome What is it? Causes Diagnosis Age at onset ... Good Sleep Habits Other Topics Experiences Narcolepsy Association UK (UKAN) This site is run by UKAN as a service to people interested in or suffering from narcolepsy as well as members of the Association. Annual Conference The 2005 annual conference is to be held in Nottingham on Saturday 17th September. Please click here for details. Please send feedback on the contents of this site to

5. Narcolepsy Nnetwork Support for people who have narcolepsy (or related sleep disorders), their familiesand friends, and professionals involved in treatment, research, http://www.websciences.org/narnet/

Narcolepsy Network You will now be redireted to http://www.narcolepsynetwork.org

6. Narcolepsy - A Sleep Disorder Site dedicated to narcoleptics by a narcoleptic. Includes experiences with this disorder, FAQs, message board, chat and information on medicine. http://www.cataplexic.com/

Narcolepsy - A Sleep Disorder Updated 06-30-05 This site is dedicated to all that live with the symptoms of narcolepsy To go straight to index click here 02-21-02 The following letter was posted on the message board recently and I felt it was the perfect letter to start my web page with. It is so perfectly descriptive of what we narcoleptics ALL go through at one time or another in our lives that I think we all can relate to it. Anyone who does not have narcolepsy but has a friend, relative, co-worker, etc that does, will learn so much about what we go through by reading this. Thanks to DeAnna for such a wonderfully worded letter.~~~~Melody Narcolepsy - A Sleep Disorder Index Our Experiences - Page with your stories on your experiences with narcolepsy. Updated 06-30-05. Narcolepsy Message Board and Help Forum - If you want to get it off your chest, ask or answer questions or just commiserate, this is the place. FAQ's - Frequently asked questions about narcolepsy and their answers.

7. EMedicine Health - Narcolepsy Overview narcolepsy is a sleep disorder that causes overwhelming and severe daytimesleepiness that often occurs at inappropriate times and places. http://www.emedicinehealth.com/articles/42505-1.asp

Search September 9, 2005 Registration Healthcare Professionals You are in: Sleep Disorders Narcolepsy Narcolepsy Overview Narcolepsy is a sleep disorder that causes overwhelming and severe daytime sleepiness that often occurs at inappropriate times and places. The daytime sleep attacks may occur with or without warning, and can occur repeatedly in a single day. Persons with narcolepsy often have fragmented nighttime sleep with frequent brief awakenings. Narcolepsy is typically characterized by the following 4 symptoms with varying frequencies: Excessive daytime sleepiness (90%) Cataplexy (sudden and temporary loss of muscle tone often triggered by emotions such as laughter) (75%) Hallucinations (vivid dreamlike experiences that occur while falling asleep or upon awakening) (30%) Sleep paralysis (paralysis that occurs most often upon falling asleep or waking up; the person is unable to move for a few minutes) (25%) Less frequently persons have all four symptoms (15%). The following are some little known facts about narcolepsy: Frequently, narcolepsy is unrecognized for many years. There could be a delay of 10 years between the onset of the condition and the diagnosis.

8. Center For Narcolepsy - Stanford University School Of Medicine The Stanford Center for narcolepsy was established in the 1980s as part of the Today, it is the world leader in narcolepsy research with more than 100 http://med.stanford.edu/school/Psychiatry/narcolepsy/

School of Medicine Home Departments Center for Narcolepsy Center for Narcolepsy Home Contact Info Research Update History ... Kleine-Levin Syndrome Center for Narcolepsy Narcolepsy is a serious medical disorder and a key to understanding other sleep disorders. Narcolepsy is a disabling illness affecting more than 1 in 2,000 Americans. Most individuals with the disorder are not diagnosed and are thus not treated. The disease is principally characterized by a permanent and overwhelming feeling of sleepiness and fatigue. Other symptoms involve abnormalities of dreaming sleep, such as dream-like hallucinations and finding oneself physically weak or paralyzed for a few seconds (see Symptoms Founded in the early 1970s by Dr. William Dement, the Stanford University Sleep Clinic was the first medical clinic ever established to specialize in sleep disorders. The clinic diagnoses and treats patients who have difficulties falling asleep or staying asleep at night, problems with excessive daytime sleepiness or other medical problems occurring during sleep. The Stanford Center for Narcolepsy was established in the 1980s as part of the Department of Psychiatry and Behavioral Sciences. Today, it is the world leader in narcolepsy research with more than 100 articles on narcolepsy to its name. The Stanford Center for Narcolepsy was the

9. [Narcolepsy Internet] Support and Information for people with narcolepsy or ideopathic hypersomnia,their family, and careproviders. Also provides a private member-only email http://www.narcolepsy.org/

[N] Welcome Narcolepsy InterNet's Acceptable Use Policy (AUP) and Charter. [N] Subscription Questionaire All members of the [N] must answer these questions before they are subscribed. [N] TLA FAQ Frequent Asked Questions: Three Letter Acronyms, Emoticons, Smilies [N] JumpStation An annotated list of WWW links that have been mentioned on the Narcolepsy InterNet's list. This is a one-stop roadmap to information that PWN, their partners and family will find interesting. NarNet 97 My talk at Narcolepsy Network's 1997 Conference Narcolepsy and Sleep Disorder Webrings Related websites to narcolepsy and sleep disorders.

10. Narcolepsy Information Page National Institute Of Neurological narcolepsy information sheet compiled by the National Institute of Neurological Disorders and Stroke (NINDS). http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

11. Symptoms - Center For Narcolepsy - Stanford University School Of Medicine The main symptoms of narcolepsy are excessive daytime sleepiness and abnormalREM sleep narcolepsy is not only a serious and common medical problem, http://med.stanford.edu/school/Psychiatry/narcolepsy/symptoms.html

School of Medicine Home Departments Center for Narcolepsy Center for Narcolepsy Home Contact Info Research Update History ... Kleine-Levin Syndrome on this page Epidemiology Socio-Economic Impact Symptoms Diagnosis Symptoms Epidemiology Narcolepsy is a frequent disorder: it is the second leading cause of excessive daytime sleepiness diagnosed by sleep centers after obstructive sleep apnea. Studies on the epidemiology of narcolepsy show an incidence of 0.2 to 1.6 per thousand in European countries, Japan and the United States, a frequency at least as large as that of Multiple Sclerosis. In many cases, however, diagnosis is not made until many years after the onset of symptoms. This is often due to the fact that patients consult a physician after many years of excessive sleepiness, assuming that sleepiness is not indicative of a disease. Socioeconomic Impact Narcolepsy is a very disabling and underdiagnosed illness: the effect of narcolepsy on its victims is devastating. Studies have shown that even treated narcoleptic patients are often markedly psychosocially impaired in the area of work, leisure, interpersonal relations, and are more prone to accidents. These effects are even more severe than the well-documented deleterious effects of epilepsy when similar criteria are used for comparison. The large majority of narcoleptic patients in this country are still undiagnosed, and narcoleptic subjects are most often diagnosed only after many years of struggle. In one recent study, the mean number of years between the onset of symptoms and correct diagnosis was 14 years. Since the symptoms of narcolepsy usually appear during adolescence, this means that most narcoleptic patients are diagnosed too late to prevent the dramatic impact of the disease on their personal and professional development.

12. Center For Narcolepsy - Stanford University School Of Medicine Center for narcolepsy. narcolepsy is a serious medical disorder and a key to understanding other sleep disorders. http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

13. LIVING WITH NARCOLEPSY Diagnosing narcolepsy. In addition to a medical history and physician examination, a diagnosis is made from polysomnogram tests in an overnight http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

14. Narcolepsynetwork.org narcolepsynetwork.org. http://www.narcolepsynetwork.org/

Welcome to NARCOLEPSYNETWORK.ORG Click here to enter http://www.charityadvantage.com/narcolepsynetwork/

15. Sleep Information For Patients And The Public, NHLBI Covers sleepiness,insomnia, sleep apnea, and narcolepsy. http://www.nhlbi.nih.gov/health/public/sleep/index.htm

HOME SITE INDEX CONTACT US TIPS ... Information for Patients and the Public Sleep Disorders Information Topics from the Diseases and Conditions A-Z Index (DCI) are also listed below and identified by this image: Web Sites and Interactive Web Applications: Garfield Star Sleeper Campaign The National Center on Sleep Disorders Research (NCSDR) Sleep Apnea Video PSA [QuickTime Format 2179 Kb] To view the video, you will need the QuickTime viewer. If you do not have QuickTime, you may download a free copy from Apple Publications / Fact Sheets: Sleep Apnea Facts About Restless Legs Syndrome (RLS) Facts About Problem Sleepiness Facts About Narcolepsy ... Back to Top On this page: Web Sites and Web Applications Publications and Factsheets See also: Sleep Information for Health Care Professionals List of Publications Information Center National Center on Sleep Disorders Research Web Site ... CONTACT US Department of Health and Human Services National Institutes of Health National Heart, Lung, and Blood Institute

16. National Sleep Foundation Nonprofit organization supporting public education, sleeprelated research, and advocacy related to sleep deprivation, sleep disorders, and http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

17. Sleep Disorders - Neurologychannel - Insomnia, Sleep Apnea, Narcolepsy From the NeurologyChannel information about sleep and the different stages, insomnia, obstructive sleep apnea and narcolepsy. http://www.neurologychannel.com/sleepdisorders/

Home Search SiteMap Ask the Dr. ... Medical Store SLEEP DISORDERS Overview Types Causes Diagnosis ... Treatment CONDITIONS ADHD ALS Alzheimer's Disease Autism ... Carpal Tunnel Syndrome Cephalic Disorders Cerebral Palsy Charcot-Marie-Tooth Disease Chronic Pain Dementia Encephalitis Epilepsy ... Guillain-Barre Syndrome Headache Huntington's Disease Hydrocephalus Lou Gehrig's Disease ... Traumatic Brain Injury Vertigo DIAGNOSTIC TESTS CT Scan MRI Scan TREATMENT OPTIONS Botulinum Toxin Therapy Epidural Injection Trigger Point Injection Vagus Nerve Stimulation RESOURCES Clinical Trials Glossary Links MDLocator ... What Is a Neurologist? Videos FOR DOCTORS ONLY Website Services Get Listed in MDLocator CME ABOUT US Healthcommunities.com Testimonials Overview Sleep is absolutely essential for normal, healthy function. Scientists and medical professionals do not fully understand this complicated, necessary, physiological phenomenon. According to the National Institute of Neurological Disorders and Stroke, about 40 million people in the United States suffer from chronic long-term sleep disorders each year and an additional 20 million people suffer occasional sleep problems. There are more than 70 different sleep disorders that are generally classified into one of three categories: lack of sleep (e.g.

18. Narcolepsy Message Board And Help Forum A place for narcoleptics to get it off their chest or to ask/answer questions or to just commiserate. http://www.network54.com/Hide/Forum/171382

Check out the Narcolepsy Chats at: TalkAboutSleep.com (check schedule for any changes) Narcolepsy Message Board and Help Forum Message board for narcoleptics, friends and family. Ask/answer questions...or just get it off your chest. Post now! View all messages Search Go back Lynne on Sep 9, 2005, 12:52 AM What do we call these things? pat littlejohn on Sep 9, 2005, 4:34 AM Re: Melody on Sep 9, 2005, 5:03 AM Great Lynne on Sep 7, 2005, 4:41 PM Re: Great pat littlejohn on Sep 9, 2005, 3:36 AM Cindy research to snail mail pat littlejohn on Sep 7, 2005, 2:52 PM Re: Research to snail mail Cindyt on Sep 7, 2005, 3:45 PM just to say hey sommer on Sep 6, 2005, 8:24 PM Hey Lynne on Sep 7, 2005, 4:30 PM help jim on Sep 6, 2005, 12:48 PM I know how you feel Dorothy on Sep 6, 2005, 3:02 PM Re: help Lynne on Sep 7, 2005, 4:34 PM Re: help Brandy on Sep 9, 2005, 1:01 AM help!! Tina on Sep 3, 2005, 10:19 PM First things first pat littlejohn on Sep 4, 2005, 12:20 PM To everyone Lynne on Sep 3, 2005, 7:31 PM

19. Narcolepsy - Sleep Disorders Including, Sleep Apnea, Narcolepsy narcolepsy. Medical Author Roza Hayduk, M.D. Medical Editor Leslie J narcolepsy At A Glance What is narcolepsy? http://tmsyn.wc.ask.com/r?t=an&s=hb&uid=24312681243126812&sid=343126

20. What Is It? narcolepsy is a malfunction of the sleep/wake regulating system in the brainwhich until The prevalence of narcolepsy is not accurately known as it is http://www.narcolepsy.org.uk/narcolepsy/whatisit/show_page

Narcolepsy Association UK (UKAN) UKAN Home Who Are We? Application forms Request Info ... Brochures Narcolepsy Syndrome What is it? Causes Diagnosis Age at onset ... Good Sleep Habits Other Topics Experiences What is It? Narcolepsy is a malfunction of the sleep/wake regulating system in the brain which until recently was of unknown origin. Its most common manifestation is Excessive Daytime Sleepiness and sleep attacks The other conspicuous symptom is a sudden loss of muscular control triggered by amusement, anger or excitement which is called cataplexy Other symptoms of Narcolepsy are: Temporary paralysis on falling asleep or awakening (sleep paralysis). Hallucinations - vivid images or sounds - on falling asleep or awakening (Hypnagogic and hypnopompic hallucinations respectively). Moments (but sometimes extended periods) of trance-like behaviour in which routine activities are continued on "auto-pilot" (Automatic behaviour). Interruption of night-time sleep by frequent waking periods, marked by quickening of the heart rate, over-alertness, hot flushes, agitation, and an intense craving for sweets. Narcolepsy usually begins in adolescence but instances of onset earlier, or as late as middle age, are on record. The type and severity of symptoms vary from person to person and may either improve or worsen with time.

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