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Saturday Nov 14: People With Narcolepsy & Hypersomnia Support Group meets in Wash DC
People with Narcolepsy and Hypersomnia Support Group of the Greater Washington DC Area Saturday November 14th, 2009 2:30pm - 5:15pm Mt. Pleasant Neighborhood Library 3160 16th St. N.W. Washingto...
Started Nov 1
Greater Washington DC Area Support Group for People with Narcolepsy meets Sunday 10/25/09
2 Replies
The third meeting of the People with Narcolepsy & Hypersomnia of the Greater Washington DC Area Support Group will be this coming Sunday, October 25th, 2009. We especially welcome newcomers to...
Started this discussion. Last reply by Saraiah Naps Oct 26.
Greater Washington DC Area Support Group for People with Narcolepsy meets Sunday 9/27/09
Greater Washington DC Area People with Narcolepsy Support Group Meeting People with Narcolepsy, and their Partners, Children, Family, and Friends: All are Welcome Sunday, September 27th 2pm – 4:4...
Started Sep 23
Many great sources of information for People with Narcolepsy (PWN)
Reading over many of the posts here, I am aware of such desperation for so many. I've been there as recently as 4 days ago. Below are the URLs for four different forums that offer a tremendous weal...
Tagged: Narcolepsy
Started Sep 17
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People with Narcolepsy and Hypersomnia Support Group
of the Greater Washington DC Area
Saturday November 14th, 2009
2:30pm - 5:15pm
Mt. Pleasant Neighborhood Library
3160 16th St. N.W.
Washington DC 20010
202-671-0200 (Library phone number)
Me...
Hi Don,
I am SO very sorry that I did not get your late Saturday night message in time to send you the info for the Oct group!! After getting only 2 hrs sleep on Friday night, I slept through all of my alarms this morning (Sunday) until my husband...
Hi,
This is interesting to me. I would like to attend, but must say that I have a combination of sleep problems. That mostly seems to mean that my sleep pattern has nothing in common with normal ones. I stay up too late and get up late and sleep d...
The third meeting of the People with Narcolepsy & Hypersomnia of the Greater Washington DC Area Support Group will be this coming Sunday, October 25th, 2009.
We especially welcome newcomers to our group! We are a diverse group in our ages, sympto...
Greater Washington DC Area People with Narcolepsy Support Group Meeting
People with Narcolepsy, and their Partners, Children, Family, and Friends: All are Welcome
Sunday, September 27th
2pm – 4:45pm
West End Neighborhood Public Library
(a 3 min...
Hi Kelly, My experience is that the narcolepsy can disrupt sleep enough (disrupted in the sense that although we people with narcolepsy (PWN) sleep, the lack of the hormone hypocretin in our brains renders us unable to experience restorative deep ...
Reading over many of the posts here, I am aware of such desperation for so many. I've put in my "signature" the URLs for four different forums that offer a tremendous wealth of information and experience from other people with narcolepsy. So, if t...
Profile Information
- How many hours of sleep do you get at night?
- 8 hours
- About Me:
- Symptoms of Narcolepsy without cataplexy began 1990
Narcolepsy diagnosed 2009
I'm on a sleep disorders site and the max sleep time allowed is 8 hours?? I'm one of the 15% of narcoleptics who have comorbid hypersomnolence. Try 12 - 15 hours.
There is much more online support and knowledge waiting for you. Try these four forums if you haven't already:
http://www.narcolepsynetwork.org/ and click on "Online Community"
http://www.talkaboutsleep.com/narcolepsy/ and click on "Narcolepsy Message Boards"
http://www.teamidesign.com/pwn/index.html
http://www.dailystrength.org/c/Narcolepsy/support-group
Comment Wall (1 comment)
- At 6:33am on October 1, 2009,
Kelly P said…
- Hey Saraiah!! Thnxx for the comment =) So things have gotten better so far. I mean, im taking nuvigil now... theres days i only need 1 pill all day/nite, days i need a 2nd dose, got my ritalin now so days i need to take that too.... the one day i had to make a wawa pit stop bc i almost fell asleep drivin 3x's, i was there for 1/2 hr. drinkin red bull & stretchin lol.
as for wakin up... thats gotten a tiny-bit better so far too. well, i had someone to help the past week and alone- its been maybe 5 days ..i woke up on time mabe 2x... but thats better than before!!! hehe.
i still get frustrated... idk why im takin 2 diff. meds. ..still doubling up... still drinkin coffee & red bull.... yet, still gettin sooo exhausted. i mean, its better than how it was (so far) and im very happy for that... i just cant wait till it can be 100% !! At least i found doctors i really like !! They were very good. im happy with them too.
How r things w./ youu ??? Hope all is well =)
talk soon. take care!!
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