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'm wondering if anyone could share their story if they were diagnosed with narcolepsy because of their cataplexy alone? Did you bring a witness to the appointment, or did some doctors believe that you had cataplexy hands down? My knees randomly buckle, and sometimes I will fall over because of this. There are times where I catch myself, or my knees won't fully give in, but I'm unsure of when it...
  • canadianqueen

    Narcolepsy Maybe?

    1
    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...
  • 2tired2type

    FOCUS

    1
    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?
  • RMJ13

    Narcolepsy Spouses

    4
    My husband was diagnosed 4 years ago and we are really starting to have a hard time on our marriage. I am having a hard time really understanding the disease and being a good support system for him. I hate that he has it and I know that it's selfish but I have to be honest. I especially hate it for our three kids. Anyone else out there to talk with???????
  • oaklord

    Xyrem help please!

    2
    I have Narcolepsy with cataplexy and rls, I started taking Xyrem only two weeks ago, and I am only on the low dose of 4.5 a night. Since I started it my rls has increased loads, and I can't get to sleep, whereas before I started it I was always out like a light the moment my head hit the pillow. When I do sleep I don't dream any more so it seems at least to help in that respect. I have had...
  • dstrange04

    Xyrem Advice

    4
    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?
  • I experience sleep attacks and cataplexy, and meet all diagnostic criteria for narcolepsy except for early-onset REM (which was absent on my MSLT).My doctor nonetheless stated that while he believes I have narcolepsy, he was required to write idiopathic hypersomnia as my official diagnosis, due to the REM issue. He explained that due to the fact I take an anti-depressant (Zoloft), my REM was...
  • I was diagnosed 2 years ago with Idiopathic Hypersomnia, but I have since felt like it was the wrong diagnosis. Like hypersomnia, I am always very tired. But I also have hallucinations some times at night while falling asleep or waking up. I also have night terrors, and sleepwalk at times. During the day I NEED to take 3 or so 10 minute naps or I find it very hard to stay awake. Can anyone with...
  • Jail time for woman who hit, killed teenUpdated: Wednesday, 04 Jan 2012, 6:44 PM ESTPublished : Wednesday, 04 Jan 2012, 12:38 PM ESTNalina Shapiro Posted by: Eli GeorgeWEST SENECA, N.Y. (WIVB) - The parents of Ryan Purcell joined a packed courtroom Wednesday as fatal hit-and-run driver Lori Maciejewski learned her fate.In October, Lisa and Peter Purcell lost their 18-year-old son, Ryan, when he...
  • I just revived my 1st shipment of Xyrem. I don't know why but I'm so scared about taking this..lol. 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

    Narcolepsy??

    7
    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...
  • 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?

    1
    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

    work

    6
    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