While I am "officially" diagnosed with Apnea, I still come here to share my ideas because I feel strongly that I have either Narcolepsy itself, or some other...
I know how frustrating it is to not have an accurate diagnosis. My MSLT sleep tests (I took 3 sets) diagnosed apena only. I know I have narcolepsy. Anyway...
To all people and especially those with N Dont forget to vote today!! It is very important that we ( those with a disability) are represented. I will not tell...
nettie1234@...
Nov 2, 2004 4:52 pm
1839
Well I had a couple of spells at the voting booth :3( and am doing stupid stuff with the oven again. I am sick of this stuff. Danita Asleep on my feet in...
Hello Everyone, My name is Rochelle & I have a 16 year old son who's been sick since August & has just recently had a sleep study. We are suppose to meet with...
Hi Rochelle, We figured out that my 11 yo daughter has narcolepsy last spring - after 35 days absent from school last year, hospitalization, & being written...
Hi Sue, Thank you so much for the reassurance. I'm sure you know how much that means! From the archives & in general, I am seeing that this is an extremely...
Meet others just like you !! Chat, make friends, ask questions and get advice. Get real help and support from people near you coping with Narcolepsy too....
Greetings, I've been on the Xyrem now for a bit. I actually woke up last night while it was still strongly in my system to use the loo. That was trippy. I...
Greetings, I've not had a lot of time to get the ball rolling on this, but did send out an email last night to a contact at the Sleep Disorders Clinic [SDC]...
thanks deb keep on doing good for all of us with N...
nettie1234@...
Nov 9, 2004 6:56 pm
1848
Deb I am happy for you It sounds like Xyrem has been good for you. I have a quick question If you do not take drugs to sleep Can you sleep at night like the...
nettie1234@...
Nov 9, 2004 7:00 pm
1849
Nettie , do you live in MI? If so whereare you at? I am in Royal Oak. Terri ... ===== Life is short we must live it to the fullest, not sweat over the...
Hi Terri, I really like Michigan It is a beautiful state and a good support group but I live in Chicago,IL...
nettie1234@...
Nov 10, 2004 3:33 pm
1852
Hi Jeanette, I'm not sure I would call the experience I have w/out Xyrem insomnia. Its more like sleeping for 2 hours and then waking up over and over again...
Hi Jan, Not to be rude of hyper-corrective [sorry if it comes across that way - I tend to be too pragmatic and wordy]... ...but I believe that Xyrem was...
I've only been to Chicago once (aclass field trip with my son) but I was very impressed it is a beautiful city, and there is a lot to see there. Yes...
Great to say hello to af friend who understands the problems with having N. Enjoy youre holiday You have lots of wonderful scenes of nature right outside your...
nettie1234@...
Nov 10, 2004 7:47 pm
1856
... From: deb_chang To: Narcolepsy-Chat@yahoogroups.com Sent: Wednesday, November 10, 2004 10:13 AM Subject: [Narcolepsy-Chat] Re: About to Start Taking Xyrem ...
Hi Danita, Here's the website for Xyrem: http://xyrem.info/; it has a lot of useful info and can probably answer your question authoritatively. Please let me...
Oh I'm sure you are right. I have never understood it till now - thx. Danita in Illinois. P.S. do you think I should continue the prozac to suppress REM? ... ...
My understanding was that because we go into REM sleep almost instantly (instead of after 90 minutes or so like normal folk) that we do not get a restful...
I see a sleep specialist after 2 neurologists and 2 regular md's were not helpful. One of the neurologists said she was a sleep specialist. Danita in Illinois ...
Terri - that certainly makes more sense and correlates with the MSLT being the test that ultimately diagnoses narcolepsy. In my most recent sleep study, I got...
thx for the info and advice - this stuff is so confusing but of course having N symptoms of confusion to start with doesn't help. Do others find that their...
I find that my symptoms (classified by my dr. of course as NOT being related to N, which i disagree with) DO seem to happen in cycles, for instance the last...
... From: Danita To: Nlist Sent: Sunday, November 21, 2004 8:46 AM Subject: I need toothpicks for my eys Well I have been bad - confused, sleepy, AB and...
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