Pillow Talk

Pillow Talk

Information

Narcolepsy

Saw groups for insomnia and other sleep disorders...we needed a group for those of us w/ Narcolepsy!!! Come talk, share stories, share info, help, vent, whatever!!!

Members: 15
Latest Activity: 1 day ago

Discussion Forum

mari underwood

HELP ME---I CANT WAKE UP IN THE MORNING 20 Replies

Started by mari underwood. Last reply by mari underwood 1 day ago.

Donna Talarico

Xyrem? 2 Replies

Started by Donna Talarico. Last reply by Rob Bixler Nov 18.

Kelly P

CHECK IT OUT!!! 4 Replies

Started by Kelly P. Last reply by Kelly P Oct 1.

Comment Wall

Add a Comment

You need to be a member of Narcolepsy to add comments!

Audra Forler Comment by Audra Forler 1 day ago
Well when I take the Nuvigil sometimes it helps me to stay awake but like today i just sleep right through it so i still have some adderall left so I just took it to help me to stay awake. Every morning I have to get up to get my kids ready for school, and half the time I can not wake up, thank God my mother is here to get them ready or they would not go to school half the time. Even though she gets mad because she dosent understand. Do you get real sleepy after you smoke a cigarette if you even smoke. Every morning or if I have not had any meds I almost zombie out everytime I smoke a cigarette.
Donna Talarico Comment by Donna Talarico on November 18, 2009 at 10:17pm
Hi Audra! I never had Nuvigil and hadn't heard of it until I started trying to find others. I am on Provigil and it didn't work the greatest for me, but my main issue is with waking, so the addition of Xyrem -- only started last week - has been a nice combo. I can't say if Provigil is better than the Nuvigil though. What do you wish the Nuvigil did better, or what are you still have issues with? Maybe we can share our experiences and then see if we have anything similar and what helped us the best.
Audra Forler Comment by Audra Forler on November 18, 2009 at 9:44pm
Kelly P thanks so much for this awesome page...I have just joined and I already feel less alone
Audra Forler Comment by Audra Forler on November 18, 2009 at 9:30pm
Hello everyone...so I see that everyone is talking about the drug Xyrem...is it better that Nuvigil...or is Provigil better...I really am not having that much sucess with Nuvigil
Donna Talarico Comment by Donna Talarico on November 16, 2009 at 10:55pm
Hi Scott! Thanks for following me on Twitter. Glad you joined this group, too. Have you asked your doctor for samples? My co-pay is a little more than I'd like it to be, so he gives me samples to stretch further between refills. But I know without anything, it's probably a lot more. Surprisingly, my co-pay for Provigil is more than my Xyrem. I, too, am getting better results with Xyrem combined with Provigil, but it's still new to me, so we'll see.
Scott Kirkpatrick Comment by Scott Kirkpatrick on November 16, 2009 at 10:32pm
I used Provigil for about a year and it changed my life. Then I lost my insurance and I lost my meds. Now I just deal.
Kelly P Comment by Kelly P on November 12, 2009 at 2:53pm
provigil worked 3 days for mee. Nuvigil seemed to last a lil longer & be the same thing but then it had no effect.... it wasnt until i started takin effexor w/ the nuvigil it seems to be more effective & lastin longer than other meds.
idk if thatll help ya at all lol.. have a good day
xoxo
Kath Comment by Kath on November 10, 2009 at 6:44pm
How does Nuvigil compare to Provigil?
Has anybody tried both?
I tend to get resistant to Provigil after long term use
Is Nuvigil more sustainable?
Bryan Yuncker Comment by Bryan Yuncker on November 9, 2009 at 8:25pm
Yeh they keep the monkey up for like 36 hours by using load music and stuff. Yeah N is a weird disease most people think, that we just sleep too much, so they think its weird that were always tired. Basically our Brain doesn't process sleep right, im not gonna get into the science of it all, but basically sleeping doesn't work for us. Even when you sleep your still sleep deprieved
Kelly P Comment by Kelly P on October 22, 2009 at 5:46am
Hiii Bryan ! ! ! thank youu much for the info. & links ! ! !

i didnt click the links b/c its sooo late & i cant read anymore than a small paragraph.lol....i will def. take a look tom. (i hope). I DID read your 'lil cliff notes' (lol) on them though.... it doesn't sound right, kinda???

maybe im just too exhausted/delirious to even attempt to think...lol...but, it wasn't makin TOO much sense to mee.....
i'll re-read it all, including the links & what they say there...AND then, i'll write another comment about it...

but, i mean... monkeys who were sleep deprived for days... did they NOT sleep AT ALL? ((i mean i get sleep... i don't wake up durin the night at all...once i hit a pillow, im asleep, im out...lol))

Monkeys w/out sleep....cog. slower((umm.no, duh. LOL...that shoulda been a given,lol)) ...then after using the nasal spray....
BAM!!!!A FULLY rested FULLY awake monkey brain!!!!ready to rock -N- roll !!! hahhahahah!!* * Sorry, don't take ANY offense to my
smart-ass-ed-ness LOL.... it's all in good fun & for a smile:)
and maybe b/c i havent slept yet....im a lil delirious/giddy. LOL.

Serious, i appreciate youu findin & gettin that info! i am strugglin ALOT. my life isnt too great right now..i'm not doin that good. i do not like livin like this everyday. it's makin mee very sad, disappointed, frustrated, angry..etc etc.

i doesnt matter if i sleep 0 or 14 hrs...i still feel the same way, shit. i still strugglin to stay awake durin the day...i still fight & push thru exhaustion to at least do 1 thing im supposed to after work, at home...

im gettin slower, wanderin, forgettin, im takin forever w/everythin, im not finishin things, im not completed things i start, i feel like i have super extreme a.d.h.d. .. sometimes i talk like an idiot i forget words, stutter, stop talkin w/out finishin my sentence, or start talkin then 1/2 way just mumble -or-make noises .. ( noises like, uhh. umm. hmmm.)..

i cant think cant concentrate cant focus cant pay attention cant organize cant get my shit figured out & situated. i just cant get my shit together.
i cant get movin in the AM, i take forever.

I'm already scared to sleep b/c i know there's a very good chance i wont wake up.. then wake up bt 10am-4pm when i should be at work, 1/2way thru work, or finishin work. now, im gettin scared to eat !!! b/c for SOME reason..i cant control my N AFTER i eat ...fallin sleep, the beyond extreme & overwhelming exhaustion, my C... !!! it wasn't THISSS bad before, it's like 50 x's worse in that area.

So0oo0ooo....
"Kelly" (lol) is over-consuming coffee, red bull/monster energy drinks, her Nuvigil med. & her 2 diff. kinds of stimulant medication. (adderall & ritalin).... i use extreme, unbelievable amounts of all 4 things...

..i'm eatin less ...and less...

My sleep... all fucked up now... used to be on a sched ...they say that works huh ..go to bed & wake up at the same time every nite. OK. yeaaaaa, NO... don't work. not for mee. Now, if im scared / feel like i wont wake up for work, ill force myself to stay awake all nite..i dont sleep , at all. when i do, i dont wake up for shit.

..* i really, really, really. need help. from someone. with anythin.i dunno what else to do. my life has been destroyed, its nothing. my life suxx rite now, alot. ive lost ALMOST everythin. i have NO life. not anymore...*


idk what to do.(that works!) where to go.(who will listen! TRY to help!) how to help myself??? idk anymore???
 

Members (15)

Kelly P mari underwood Audra Forler Kath Rob Bixler Bryan Yuncker Donna Talarico Maria Ceresia Ryan Westwood Rob Finkle J C Toni Toothaker Scott Kirkpatrick NarCat Sandi Miller
 
 

Latest Activity

Hello, I recognize myself in just about every story on this board. One thing that I am now looking at more closely and that you have done is finding a proper shrink--more about this later. So, am brand new on this site--found it as I was about t...
17 hours ago
For some people, insomnia would be better, don't you think? ---------------------------- 'Dream killer' cleared of murder A husband who killed his wife while he said he had a dream about an intruder has been cleared of her murder. Brian Thomas,...
17 hours ago
HOW CAN YOU AFFORD NOT TO WORK OR DO YOU HAVE A HUSBAND WITH A JOB,I AM A SINGLE MOM WITH 1 INCOME,I CANNOT AFFORD TO LOSE MY JOB,I HAVE SOMEONE CALL ME EVERY MORNING,AND AN EXTRA LOUD RINGER IN MY PHONE LINE,MOST OF THE TIME HE HAS TO CALL ME TWI...
yesterday
YES SOME OF THE SIGNS OF NARCOLEPSY,SLEEP AT ANY GIVEN TIME OF THE DAY,HAVE TO STAY BUSY ALL THE TIME,CANNOT WATCH TV OR READ,SO---I BAKE AND COOK ALOTTTTT,I THINK MY CIRCADIAN CLOCK IS MESSED UP,ANYWAYS,THE DOC SAYS NO ON THE NARCOLEPSY,REALLY,I ...
yesterday
i have had so many jobs that I have lost because of this...im working now and going to school for psychology so I can help others with similar situations. But as of right now or since the other day my work took me of their schedule untell my docto...
yesterday
has your doctors said that you have narcolepsy....and if not do you have other symptons that apply to narcolepsy? My children are 5 and 6 and they already notice mommy has a hard time waking up and staying awake
yesterday
WELCOME TO OUR DISCUSSIONS,I AM SORRY YOU GO THROUGH THIS TOO,BUT,IT'S NICE TO KNOW WERE NOT ALONE ON THIS-I JUST WISH THEY COULD FIGURE OUT AN ANSWER WHY ??????HAVE YOU BEEN TO ANY DR.'S FOR YOUR PROBLEM AND WHAT HAVE YOU TRIED????DON'T YOU FEEL ...
yesterday
NOTHING IS SHOWING UP EXCEPT WHAT THEY CALL IDIOPATHIC CENTRAL NERVOUS SYSTEM HYPER-SOMNIA,IT"S MEANING IS THEY DON'T KNOW WHY I NEED TO SLEEP ALL THE TIME,AND DEFINITELY DON'T KNOW WHY I CAN NOT HEAR THE ALARMS,I HAVE BEEN ON RIDILIN,PROVIGIL,AND...
yesterday

Events

 

© 2009   Created by sleepfoundation

Badges  |  Report an Issue  |  Privacy  |  Terms of Service