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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: 43
Latest Activity: Jun 25, 2016

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HELP ME---I CANT WAKE UP IN THE MORNING 55 Replies

Started by mari underwood. Last reply by Laura Rizzi Jan 10, 2011.

Xyrem 25 Replies

Started by roger jadosz. Last reply by Donna Talarico Jul 4, 2010.

Xyrem? 9 Replies

Started by Donna Talarico. Last reply by Donna Talarico May 21, 2010.

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Comment by elizabeth on December 1, 2010 at 8:06am
please can i talk here? i have been trying to talk in the other groups for people with sleep apnea and though that is what i have my biggest problem is with the eds not the apnea or my cpap.....none of them understand eds or taking nuvigil and i just sometimes want to talk about how bad it feels to have to wake up everyday not knowing wether i can work or function in that day..... so no i dont have the big N but i do have severe EDS and i dont know i just feel that you can understand better then they can..........
Comment by Sharon D Smith on June 15, 2010 at 8:49pm
Join others with narcolepsy and our loved ones in this first-ever rally of support!

Narcolepsy ImmunoChip Project www.refresheverything.com/narcolepsyimmunochipproject

This Pepsi program awards grants monthly to the proposals that get the most votes. VOTE EVERY DAY through the end of June and also recruit family and friends 13+ to vote every day, too.

We've made it to #45. Help us get to #1! See previous days' standings at http://www.narcolepsynetwork.org/2010/06/vote-each-day-in-june-for-...

Thanks, everyone!
Sharon
Comment by Raven Silva-Barton on June 2, 2010 at 11:48am
Hi. I am new to the group.I used to think I had residual sleep issues from when I had mon, but that was 9 years ago. Ever since I was very young, I remember feeling paralysis upon waking, though I don't think it happens now, and it used to scare me. My mom doesn't really believe in narcolepsy, so no support there. I have been able to slip into REM sleep immediately upon sleep, and feel that I have missed out of non-REM sleep for ages, because I wake up being more tired, but remembering far more dreams, lucid ones included, than most people seem to report. I made from 3.5-4.0 in college and undergraduate studies, despite micronapping at times--I tried Excedrin to stay awake when possible. However, I have pages of notes where I can see how my handwriting and content changes when I have fallen asleep and continued to take notes. If I fall asleep in a conversation, usually as a passenger in a car, I say bizarre, off-topic stuff, probably responding to dream content when I am trying to pass off being awake. My favorite recent one was when I told my fiancee, "Your Cheshire Cat Lies," in the middle of a conversation when I dozed off for a couple of seconds.People just assume it is on purpose or that I am odd, and while all that may be true, I do believe narcolepsy is the culprit.

I HATE the inability to correct an episode when it is happening--that feeling of helplessness is irritating, and people assume you are lazy, have diabetic or hypoglycemic concerns, or are bored or did not get enough sleep, though for me, that is not the case. I can nod off in a movie--a common thin that irritates me--even if I have had 12 hours of sleep. If I get really tired, I feel I cannot move (I experienced this with mono), and almost require another person's leverage to get up if I am feeling that exhausted, or I can take a quick nap, and that feeling of not being physically capable of moving may pass.

I think my symptoms are lessoned if I am physically active with exercise--the sedentary times seem to increase the narcoleptic episodes. I don't take medication for narcolepsy, and I noticed several people mention a few. Does anyone have luck with any natural/herbal remedies or activities?
Comment by Pamela Thomason on May 12, 2010 at 9:06am
I've switched from provigil to the nuvigil and after a month must say the nuvigil is better. Less daily dosing for me and it lasts much longer and less side affects. I do experience "to the ground" cataplexy, which the nuvigil has had some effect, just for the fact that I am less sleepy during the day. The fragmented sleep at night just adds to the day time sleepiness which adds to my cataplexy. I did end up in the ER after a week on the ambien. I had flu like symptoms and heaviness in the chest after about five days. I thought it was working well and I was experiencing eight hours sleep. But to my surprise, my husband said I was still getting up two times a night, must have been sleep walking. After all tests done in ER came back perfectly the ER doc asked about the ambien and how long I had been taking it. He said all my complaints were severe side affects from the drug. After a couple of days off the ambien all symptoms disappeared. I hope to maybe try something else in the future with less side affects.
Comment by Cynthia Lockey on May 12, 2010 at 2:48am
Well I started 200 mgs of Provigil instead of the badaid of Ritalin...thankfully the insurance is willing to cover provigil now....lets just hope it works :)
Comment by Kelly P on April 5, 2010 at 7:41am
hii donna!! thnxx :) yeaa i was outta commission for quite sum time too. i was actually suppose to start xyrem then i found out soo i had to cancel lol. not drinkin beer when yaa want suxx but its worth it for sum things like for the baby... and for your health. its not too bad after awhile..heyy, at least you can drink on weekends still!!! lol hope all is well & youre back on a good track :)

and thank you pamela for the posts. good luck w/the ambien & nuvigil!!!

take care both of yaa * xoxo
Comment by Donna Talarico on April 1, 2010 at 9:38am
Hi Kelly! I have been out of commission from the forums, etc. for a while. I just saw your reply about your news. Congrats! I was off Xyrem for a few months, simply because I never got my second refill and then I had just started dating someone and it just got my schedule all off -- you know how it is. But, things got worse without it and I really went downhill with getting up in the AM, so I just started taking it again last week and have been more serious about it this time - not having the beer or two after work that I usually do and just save that for the weekends. So far, so good - but this drug is hard to adjust to as far as my lifestyle went. I finally realized that my health and getting through the day was way more important.

How is everyone else doing? I am going to try to update the videos and blog I was keeping about what I just said above and then some.
Comment by Pamela Thomason on March 31, 2010 at 10:23pm
If anyone is interested in another narcolepsy forum, go to cataplexic.com and click on message board. I have belonged to this forum for several years and most of us are older narcoleptics, but we have a wealth of knowledge, support, help and compassion. New and younger people are joining our group, I've met several of them in person in my travels. You are all welcome to join in and become a part of our family here on line.
Comment by Pamela Thomason on March 30, 2010 at 9:59am
I've had narcolepsy over forty years and have tried about everything. My sleep doc at Mayo, just increased my dose of ambien cr and for the first time I slept 8 hours in years. Feeling pretty good this morning. I was dosing 400 mg of provigil, spread out at 100 mg increments four times a day along with three naps, but it wasn't keeping me awake after a while. I'm going to start the Nuvigil today and see how that goes.
Comment by Kelly P on March 20, 2010 at 9:18am
yeppp... that used to happen to mee ALL the time!!! everytime i got into someone's car, if the ride was longer than i'd say 1/2 hr., i was out like a light!!! then my friends would have to wake mee & i wouldnt know where i was or what happened.. lol.. it was terrible. i would just load up w/ a red bull or coffee...roll the window down, put music loud, smoke cigs.. dance & sing, or non-stop talk..just to stay awake in their car lol
i havent been a passenger in a long time b/c thats all i do is drive soo idk if that happens to mee anymore...
 

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