Living with Narcolepsy

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Last Name
First Name	Sam
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Comments	Hi. I was diagnosed abut five years ago but I've always been like this ~ needing a sleep schedule (college was difficult), sleepy, easily falling asleep at times when I shouldn't...you all know what I'm talking about. I do not reach stages 3 or 4. I am in the highly abnormal range of this. The doctor who diangnosed me was amazed that I have gotten this far in life as welll as I had at that time. I also have ADD and Bipolar. One of the meds I take for Bipolar does help me sleep better. The problem now is waking up. I mean, it can take me an hour to wake up enough to get out of bed. The alarm can go off for 20 minutes before I hear it. I take 72 mgs of Conerta and 200 mgs of Provigil Even still, I'm holding my own.
Contributed By	SunAndRainTogether

Last Name
First Name	Tina
Preferred IM Client	hotmail
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Gender	female
Age	36
E-mail	tinavas6@hotmail.com
Location	Indiana
Comments	My husband is the one with Narcolepsy.He was diagnosed in June 2006.He's not a computer person,so I'll read messages and type for him.
Contributed By	CoatedChris

Last Name
First Name	Kay(or CK)
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Gender	female
Age	39
E-mail	ckpalmer33@hotmail.com
Location	Utah
Comments	I have lots of health problems! But feel like this even though is not the most serious for sure! Is crucial to have help with....I only have a short time to live(ask me privately why), and don't want to waste that precious time sleeping!! I am open to any suggestions and willing to offer any help or support needed! CK
Contributed By	Tweetyincage1

Last Name
First Name	Candida
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Gender	female
Age	36
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Location	canada
Comments	I cannot describe to you all the frustration I feel when I think back to how many times I spoke to my doctor about my symptoms... There always was an explanation for it you know?? 'hard pregnancy' 'new baby' ' depression' '2 children 18 months apart' ' working mother' 'single mother of 3' 'not exercising enough' 'not eating healthy enough' ... and on the excuses went from him. I can recount these appointments back about 15 years... It wasn't until 2 years ago that I went on a trip with my mother, and she saw how much I was sleeping and how I would fall asleep at inappropriate times that she made me go to the doctor again. Before I got to the doctor, one night I fell asleep at 5 pm and didn't wake up until 6 30 pm the next night.... that scared me enough to get me to try one more time. I was then referred to a sleep clinic where after a number of nights and days monitoring of naps etc. they gave me the diagnosis. I was relieved that I wasn't just lazy. I was relieved that I wasn't going crazy and that my symptoms were real and not imagined. I was also relieved to find out there was something that they could do to help me stay awake. I feel frustrated that it took so long to get to the root of these issues. Why were my consistant complaints not taken seriously before? There needs to be a greater awareness of these sort of issues...they need to take someone seriously when they have a sleep issue of any sort. It affects all aspects of your life, including the quality of it. It is not curable...and if it was any other disease/problem...I chance to say it would be looked at much more seriously and there would be a greater understanding from society as a whole regarding the challenges and limitations of such a diagnosis.
Contributed By	eternallytired

Last Name	Burgan
First Name	Monica
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Gender	Female
Age	52
E-mail	chompers_893@msn.com
Location	Tucson,Az
Comments	I would like to hear more about xyrem, I'm currently taking concerta 54 mgs and straterra miracle drugs for me I don't go into sleep srages 4 at alland very little rem which is very fragmented, i don't know exactly what that means I have had two sleep studies which within the lasat 3years. both came out the same no stage 4 and very little rem and what little rem I have is very fragmented. My sleep is terribl;e toss and turn all night!! I've tried restoril . It worke well before, but not working very well anymore I have extremly vivid dreams They seem, so real!! It take about an hour before i'm comfortable after I wake up . i'ts like in these dreams I'm trying to find somebody , bvut never find them but i can't!!! My nights are effecting my studiews. I am in schjool tro learn a new proffesion. my last profession It was a sit down.job not good Iv'e heard promissing th9ings aboput xyrem. Can any body help me or give me some one who can explain all this Stuff AT MY WITS END AND WANT TO GIVE IT ALL UP AT TIMES if antone is familiar with these problems. I shoiul also have a very bad case of adult ADD which doesn't help the narcolepsy. PleaSE HELP ME IF SOMEONE OUT THERE can PLEase help me if yoy can .
Contributed By	Tigbits

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