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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  • deadtired

    Alone

    8
    hi I'm new and just officially diagnosed last week. I have narcolepsy without cateplexia. I have a terrible time explaining what narcolepsy is like to my family and I therefore have very little support. I'm 48 with 2 daughters 9 & 11. We have live with my boyfriend now for 2 years. I have fought my symptoms for so long I have no idea how to ask for help. I am ashamed that I even need help because...
  • TampaMarty

    Dealing with Possible Narcolepsy

    1
    I had my most recent visit to Sleep specialist today. The EDS is not getting any better even with 6+ hours sleep w/bipap device & Nuvigil 250mg...after waking up @ around 9 am by Noon I'm starting to get sleepy & by 2 pm I'm falling asleep watching TV for upwards 30 mins, during conversations with family & past instances of nodding off at stoplights even a car wash. But somehow my daytime sleep...
  • amack0601

    Narcolepsy??

    8
    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...
  • hiddenshadow

    Narcolepsy or Idiopathic Hypersomnia?

    3
    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...
  • SleepyCourtney

    Insurance won't cover modifinal

    2
     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...
  • 2tired2type

    FOCUS

    2
    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?
  • SleepySydney

    Newly Diagnosed-questions

    6
    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...
  • teresashinn

    Anyone in the UK

    3
    I would love to hear from anyone who has narcolepsy and lives in the UK.
  • deleted_user

    Is this mild cataplexy? help pls!

    6
    I am a nursing student and almost finished with school thank goodness. It has been almost impossible for me to get through school being as exhausted as I am. Fighting to stay awake and fighting some odd symptoms. Lately I have been having what I would describe as brain "zaps" kind of like a feeling of electricity in my head or as if someone is "stirring" my brains. When I have this feeling I feel...
  • sleepaddict

    Newly diagnosed

    0
    I was recently diagnosed and am stuggling with how to deal with this and I was also diagnosed with sleep apnea at the same time. I cried this morning because I saw that some of my friends got engaged and another had a baby. Meanwhile, here I am trying to sleep with a mask on my face and fight 33 years of untreated Narcolepsy. I haven't had a relationship in a year and that's because I was too...
  • Frustrated2

    How to motivate spouse w/ narcolepsy w/ cataplexy

    4
    My husband was diagnosed with cataplexy about 3 years ago but has been dealing with this disorder since he was 17 (now 40). We have been together for 20 years so I have seen this illness progress. I have done a lot of research in the last 4 years about this illness, but still find it hard to cope with it. He is so sick, he cannot work. I am the sole provider of our household of 4. I feel like I...
  • Cpcake980

    Looking for hope

    2
    I am 36 and was diagnosed in 2012 with narcolepsy and cataplexy. I don't fully understand it or what is happening to my body. Over the last year my cataplexy spells have taken a major turn for the worst and I am having severe spells multiple times a day. I feel alone in this and have little support or people who believe this is a real disorder. It's very frustrating and it's hard not to be...
  • sleepylittle1

    Feeling alone

    3
    Im 19 and in the last year (2015) was diagnosed with narcolepsy-cataplexy. I have cataplexy, sleep paralysis, hallucinations, and day-time sleepiness. My family does not understand this disorder, though they have come with me to the diagnostic appointment and understand the tests conducted. I have gotten in a car accident (nothing major) from falling asleep while driving at 7am, a month or so...
  • nora94

    Narcolepsy without Cataplexy

    2
    So, I am totally new to this site.I have Narcolepsy Without cataplexy. I was diagnosed with it a few months ago (July 2016). I also have ADD and I'm in nursing schoool. I take Adderall 10mg twice a day with caffeine supplement 200mg whenever I need it. I was also prescribed Ambien 10mg to take at night but I rarely get enough hours of sleep to take it. The last time I took it, I ended up sleeping...
  • canadianqueen

    Narcolepsy Maybe?

    4
    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...