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.

1 Online
  • alexisdanielle

    Just wish people could understand sometimes

    I was diagnosed about 2 years ago with narcolepsy without cataplexy. I have severe EDS, takes me less than 3 minutes to hit R.E.M. once I'm asleep, and I never feel refreshed in the mornings and have an extremely hard time being able to wake up and get out of bed (rather just roll over and go back to sleep. Pretty sure I'm a Type 1 even without cataplexy).As far as I know, I have had it since I...
  • Deadredsister

    xyrem. not working

     Hi. I am a 55 yo female,recently diagnosed w/narcolepsy after more than 4 decades of extreme sleepiness. My sleep doc perscribed xyrem after trying a multitude of meds that didn't work on me. I have been on 4.5g twice a night for about a month and a half,but still can't fall asleep on first dose. I also take 1 mg of clonopin,10mg of flexeril and 10mg of soma along with xyrem.wondering if anyone...
  • Queen_Bash

    A Driving Train Wreck- HELP NEEDED

    25 yo female diagnosed with Narcolepsy without Cataplexy about 8 months ago. I have been taking modafinil since being diagnosed but the effectiveness of the drug seems to wear off after a short space of time. I orginially started on 200mg but this was then increased to 400mg a few months ago as I started having sleep attacks again. Unfortunately this higher dosage has started to become...
  • deadtired


    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...
  • Hello new friends,My situation is similar to many of the profiles I've read on the site.  I was diagnosed with Narcolepsy in 2015 at the age of 51, however, in hindsight realize that I have had it since age 6 or 7 but developed natural coping techniques that people use when dealing with EDS (frequent napping).I'm writing to the group for any suggestions you may have on how my doctor should...
  • Now_awake

    How to live now that I am awake?

    I started med treatment a couple months ago.  We made one dosage adjustment a couple weeks ago and I am able to have about 15 hours of wakefulness each day.  Like others, it does help to take meds at the same time each day.  I take mine about 5 AM.The novelty of finally being awake, not at all fighting to stay awake, or falling asleep during inappropriate times, has worn off.  Now as I face...
  • MysticPen

    Why I joined...

    I just heard the most heartbreaking tale from a co-worker... the reason for his divorce.His wife had H1N1 ... nearly died, became narcoleptic, got prescribed a bunch pills, acted cray cray. etc... Umm.... yea that was my ENTIRE high school years. I want to cry. I want to scream.I feel soooooooo miserable for that poor woman (2 kids). Dad got everything - house and kids.I want to slap him. I want...
  • MzKim

    Family don't understand

    I was diagnose with narcoslepy not long after starting college, but I was teased and talked about when I was in highschool.I also had to deal with in college , however thanks to my best friend she would help me to stay awake and we later go over the notes that I have missed. My sister makes me feel really bad because of what I have. I just once  wish she could see howI feel and the sad moments...
  • Camryn34

    just upset

    Hello, i'm 17 years old and i was diagnosed with narcolepsy 1 year ago and i am medicated on the highest dose of nuvigil.... and i am miserable. i feel like my days are just cloudy every day and like clouds cover my eyes like it's miserable and dull. it ruins my days and i feel exhausted and feel i can't enjoy my life. it kills me and i just wish the cards were different and i wasn't ever...
  • Husband

    New here

    I'm a 43 and was diagnosed with narcolepsy with cataplexy 5 years ago. Since then I have had to retire because my diagnosis disqualified me from doing my job. The doctors see me once every 6 months just to tell me there's nothing new on the market for treatment. Turns out I'm allergic to everything on the current market. So I'm untreatable. Has anybody run into this problem?
  • tngirl

    Glucose testing and sleepiness

    I've started checking my blood sugar several times a day to see if I can find a connection w feeling crappy.  A little self study on how food and adderall effect my blood sugar levels and fatigue.  If anyone has done anything similar I'd love to hear about it or if anyone has researched the effects of adderall and/or ambien on blood sugar.p.s. I'm 42 yo female diagnosed narcolepsy and...
  • deleted_user


    Has anyone else on here also been diagnosed with fibromyalgia?
  • Kiimii

    A Dream within a Dream

    Has anyone else here read "A Dream within a Dream" by Edgar Allen Poe and thought that he too, must have some sort of sleep disorder?There is so much heart break in the poem, where a man tries to explain ferverntely to others that what he dreams is as real to him as reality. My narcolepsy has led me to have vivid, lucid dreams every night since I was 5. Because it all felt so real, and because...
  • AndrewLondonUk

    Flu Vaccine

    Hi,In 2009 I had a seasonal flu jab for the first time. Shortly after I began to experience cataplexy, later the signs of narcolepsy became evident.I keep reading about the pandemic vaccination and it's role in new cases of narcolepsy. Is it just a huge coincidence that my narcolepsy began after my jab or is there a link nobody is reporting on?Advice would be appreciated.ThanksAndrew
  • spanieldad

    Advice please

    Hi allIm a 53 year old man who has had Narcolepsy with cataplexy as long as i can remember, I have never had a diagnosis as im to worried about loosing my job etc, I have Sleep paralysis, Hypnagogic hallucinations, cataplexy, automatic behaviour and sleep attacks, my short memory is appaling. I sleep  12 hours a night if i can then it's a battle to stay awake all-day, my question is can...