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Xyrem available in Wisconsin   Message List  
Reply | Forward Message #1079 of 2876 |
Re: [Narcolepsy-Chat] type

Oh boy Gordon have you asked the million dollar question actually!

This is only my version of N...the way that I "sort" N and how I am able to better understand N.

There is N with Cataplexy and N without Cataplexy.

Basically two groups that the science world puts us in, but a good doc will realize that it is not that cut and dry by any means.

There are many symptoms that a PWN (person with N) can have, some have all the symptoms and some have none other then EDS (excessive daytime sleepiness). I personally suffer from all of the symptoms including Cataplexy, one of my best friend's who also has N has EDS only.

Below I am going to list some of the symptoms for you as well as the only medical form of being properly dxed with N. If you suspect that your gal truly has N or another sleeping disorder, please please seek out medical advice. Be persistent...very persistent, most GP's have had a very minimal amount of sleep education and all to often a person will have to insist to go see a Neurologists or another sleep certified doctor...be persistent!

Here is a great site that you might want to check out also www.talkaboutsleep.com here you will also be able to find a certified sleep doctor in your area!

Good Luck!

IBC

Narcolepsy (N) is a chronic sleep disorder. The main characteristic of N is excessive and overwhelming daytime sleepiness. A person with N is likely to become drowsy or fall asleep at inappropriate times and places. Daytime sleep attacks may occur with or without warning. Sleep attacks may be irresistible and may occur repeatedly in a single day.  Note, these symptoms are rarely seen in children.

Narcoleptics may experience other symptoms. Excessive Daytime Sleepiness (EDS), Cataplexy (C), Sleep Paralysis (SP), Hypnagogic Hallucinations (HH), Automatic Behavior (AB), Disrupted Nighttime Sleep (DNS), Microsleeps (MS) and others.  Children rarely manifest all 4 symptoms.

Cataplexy (C) is a temporary decrease or complete loss of muscle control triggered by a strong emotion such as laughing, anger, or surprise. It can range from a weakness in the knees to a complete "rag doll" collapse to the ground. Though conscious and aware of their surroundings you are essentially paralyzed. The frequency of C varies from person to person and they usually does not last more than a few minutes.

Cataplexy is seen in about 70% of patients with narcolepsy, and its presence with excessive daytime sleepiness strongly suggests the diagnosis of narcolepsy Specific historical question concerning cataplexy are required.

Sleep Paralysis (SP) is a brief loss of muscle control that occurs as a person is drifting to sleep or awakening. While somewhat aware of their surroundings, they are unable to move or speak.  It is often accompanied by hallucinations.

Normal sleep paralysis occurs during REM sleep in normal subjects.

Hypnagogic Hallucinations (HH) are vivid dream-like images and sounds that are experienced at sleep onset. These images can be very frightening. Emotions that can accompany these images are fear, anxiety, and dread.

Automatic Behavior (AB) is when a person performs tasks and activities while awake and without recollection of the event. Essentially, it is a "black out" during wakefulness.

A Microsleep (MS) is a lapse from wakefulness into sleep (stage 1) that lasts just a few seconds.  Characteristics of microsleeps include repeated yawning and/or difficulty keeping ones eyes open.  Memory formation is usually impaired during microsleeps.

Disrupted Nighttime Sleep (DNS) A person may awaken several times throughout the night or awaken and remain awake for long periods of time every night.

Other symptoms are:  Weak limbs and general weakness, Depression, Inability to concentrate, Confusion, and Shortened attention span.

N - Diagnostic Criteria for Narcolepsy

1. Complaint of excessive sleepiness or sudden muscle weakness.
2. Recurrent daytime sleep episodes for at least 3 months.
3. Cataplexy: sudden loss of muscle tone
4. Associated features: Sleep paralysis; hypnagogic hallucinations; automatic behaviors; disrupted major sleep episode
5. Polysomnographic findings: sleep latency <10 minutes, REM sleep latency <20 minutes; MSLT findings: mean sleep latency <5 minutes, two or more sleep-onset REM periods
6. HLA-DR2 positivity
7. Medical or psychiatric disorders and other sleep disorders are not the primary cause of symptoms

Minimal criteria: 2+3 or 1+4 + 5+7
(From The International Classification of Sleep Disorders: Diagnostic and Coding Manual)

 

 Gordon Stewart <gordon52@...> wrote:



Hi there  are there many types of Narcolepsy ?

I dont fall asleep or anything, But i am constantly tired...

G.



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Tue Apr 1, 2003 2:16 pm

jbahr007
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Message #1079 of 2876 |
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Unlike most other states, until a month ago, no narcoleptic could receive Xyrem unless they had already been part of a study. That counted me out. But my...
Jan and John Saecker
w2771circle
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Mar 31, 2003
1:20 am

Hi there are there many types of Narcolepsy ? I dont fall asleep or anything, But i am constantly tired... G....
Gordon Stewart
gordonisnz
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Mar 31, 2003
9:49 am

Narcolepsy usually has a variety of symptoms, and tired is not the same as sleepy. Some of us see dreams, like a transparent movie, while we're awake: ...
Jan and John Saecker
w2771circle
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Mar 31, 2003
5:07 pm

... Ah - ok - Yup.. my fiancee has Narcolepsy.. (has bad dreams etc..) although sghe says her doctors dont know if it is narcolepsy - Doesnt meet the ...
Gordon Stewart
gordonisnz
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Apr 1, 2003
10:00 am

Oh boy Gordon have you asked the million dollar question actually! This is only my version of N...the way that I "sort" N and how I am able to better...
J Bahr
jbahr007
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Apr 1, 2003
2:16 pm

Hi, its bed-time (2.30 a.m. ;-) - i wasnt tired 20 mins ago - I am now ;) - Was finishing off emails & such.. - website design etc..) Anyway, my fiancee has...
Gordon Stewart
gordonisnz
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Apr 1, 2003
2:37 pm
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