Narcolepsy Support Group

A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.

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  • I just revived my 1st shipment of Xyrem. I don't know why but I'm so scared about taking I think it has to do with having bad side effects with the other sleep medicine I've taken before.
  • Does anyone here have narcolepsy without cataplexy, sleep paralysis or hypnagogic hallucinations? I was diagnosed last week due to my severe EDS and MSLT results- I slept all five naps, for four of them had a sleep latency of under 3 minutes, and had 2 SOREM. My PSG was normal although I was in REM for 39% of the time which seems high to me. I also do not fall asleep uncontrollably. I have...
  • amack0601


    How many of you out there have almost or have fallen asleep at the wheel while driving?my sleep at night is a bit all over the place and I have to get a good nights sleep to go on a long drive, unfortunately I am still feeling drowsy at the wheel and I actually get a headache that I almost fall asleep at the wheel. My doctor had to ban me from long distance drives when I was pregnant as I was...
  • 2tired2type


    I have come to terms with having narc and its vast plethora of symptoms,a long time ago .But I will never get use to the fact that I spend all my focus on the inability not to focus and stay awake. Anyone else feel like its the same bad deja vu everyday?
  • canadianqueen

    Narcolepsy Maybe?

    I've not been diagnosed with Narcolepsy but was told I may suffer from it. I wanted to know if anyone could relate to this because I feel I don't have Narcolepsy. I dream all night long and wake up in the middle of my dreams, so I always remember them and they are very vivid. Some days I'm tired, but not enough to sleep but have no energy to do anything. At night, it takes me an hour to fall...
  • I've been on Nuvigil for about 3wks and had a rash on my face for a little over a week. I can't determine exactly when the rash started but I know it was after I started the meds. I took Nuvigil before a couple yrs ago and didn't have any side effects. It didn't work for me then so I went off it but now a new Dr has tried me on a combo of the Nuvigil and xyrem. I've been on the xyrem for a year...
  • emaleer

    Provigil losing effect?

    Nuvigil worked well for me, but I had to switch to the cheaper option. It has been working well for a year and a half, but not it seems to be losing its effect. I am tired all the time and I am back in the place I used to be where I wish I could just slip into a coma for a few weeks so I can rest.
  • vonnyzzz


    how many of you work full time?how many got a job since diagnosis?how many lost you job or had to give it up?i worked as a care assistant for 22 yrs and struggled to even get there never mind do my work, that was 7 yrs ago
  • Hello all...I am a 63 year old male who began having sleepiness back in high school but was never diagnosed with narcolepsy until the age of 43 back during 1994. Medication has always done little to change my energy level. I worked from 1968 thru 2002 as a carpenter, a very demanding job that I did my best to perform, even although always being very sleepy and tired. The saddest thing about...
  • dstrange04

    Xyrem Advice

    I was diagnosed with narcolepsy with EDS about a year ago. My doctor recently started me on xyrem and I'm really struggling adjusting to it. Does anyone have any experiences with xyrem and tips/ advice to offer?
  • title is: Invisibly-ill Living The Dis-understandingA poem on Cataplexy, from the book:__________________________________________________________Muscles FlickerA tickle brings a laugh, then comes a flicker into collapse.Be it a joke or someone's no good smoke, the toll is being unable to roll, kind of lost with odd control.The mind is not...
  • That it's wrong to covet thy neighbor's wife or anything else he, does that mean I am wrong to covet the life of someone who doesn't suffer the exhaustion of having narcolepsy? All I have done for the past six hours is try to do dishes, clean the cat litterboxes, take the trash out, and get the mail. Oh yes, and take a shower and shave. I am so exhausted I have completed none of those...
  • I was just recently diagnosed with narcolepsy (May 20, 2015). My initial feelings - truly! - were relief! I thought now SO MUCH makes sense. No, I'm really not trying unconsciously to sabatoge my career. No, I'm not making up this uncontrollable weird sleep thing that happens some times. And after even more thought - I now understand how it was possible that I fell so hard I blew out my ACL...
  • Does anyone else take Zoloft or any other SSRI to control some symptoms? (not the ones that involve jumping off a bridge or throwing yourself in front of a moving train... On Zoloft, my Cataplexy, sleep paralysis, and hypnogogic/hypnopopnic hallucinations were few and far in between. If I miss 2-3 days in a row (only once when my meds got lost in the mail!) they all start up with a...
  • Hi all, I was diagnosed a year ago with Narcolepsy W/O Cataplexy, however my physician is aware that sometimes when I get startled/excited/scared I can get tingling and some weakness in my arms but it is not often and I do no always lose my muscle tone, occasionally I will drop my pencil or my arms will become very weak- anyway, yesterday I believe I had my first real episode of cataplexy and I...