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.

0 Online
  • Laura72

    College

    2
    I'm in my junior year of college with N w/ C. Sometimes the hardest part of it is when I have a cataplexy episode in the dinning hall or public building on campus and even though my friends will tell bystanders I'm fine and not to call 911 or campus police, for some reason they  always seem to think they know whats best for me even though they don't know me. Then I 'magically wake' up just like...
  • deleted_user

    Does Exercise help with your Narcolepsy?

    I am in good shape. I'm 40 years old, weigh 115 lbs. (I've lost about 12-15 lbs. since June). Now that I'm a stay at home mom, I've found that I'm much more active then when I was working and I have healthier eating options. I'm doing more (98% of everything) around the house. It's even my job to mow the lawn and stack the firewood. My husband, however, feels that the "magic trick" to help my...
  • MysticPen

    Narcoleptic Choices

    1
    I realized a long time ago with narcolepsy, you can't have it all. You can either eat on your lunch break, or sleep. You can graduate from college or you can maintain relationships. You can have a career or you can have a social life. Eventually I did get ma'rried, to a very understanding guy... so there's that, but we don't talk much during the work week.  I work. I sleep. So, when you need a...
  • Camryn34

    just upset

    4
    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...
  • Trish4

    So many questions...

    2
    Hi - I am new to the support group.  I have had the tell tale signs of Narcolepsy since age 19 (onset with hallucinations and EDS).  I've developed Cataplexy over the years and finally got diagnosed this summer.  I am now 43.  I became almost completely disabled last December when I sought a new doctor to take me off of the medication "triazolam" that I was on for 7 years to treat the...
  • Laura72

    friends that just don't understand

    1
    I just got into an argument with one of my closest friends. Everyone is always trying to tell me to get more sleep and most of the time I just try to nod and ignore them because its hard to make them understand that no matter how much I sleep, I will still feel terrible and fall alseep durring class. I had had a tough day today and so when my friend tells me to try to go to bed early, I make some...
  • deleted_user

    Profuse sweating and Adderall

    9
    I sweat all the time. It can be 40 degrees outside and I'm sweating like I'm in Miami in a snow suit in June. It is embarassing! Idon't want to leave the house! HELP!!!!!!
  • AndrewLondonUk

    Flu Vaccine

    2
    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
  • BlueMarlin

    Back again and needing support

    1
    hello all!  I've suffered w narcolepsy my whole life. Now that I'm getting older, it's much more difficult. Co-workers don't understand so I do not get any empathy from them. The worst part is having a rough day and being unable to work. ( I teach elementary). Of course my Dr will call in a medical excuse, but I still feel badly. Now w winter coming the weather plays havoc w me. Dark rainy days...
  • Deadredsister

    xyrem. not working

    3
     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...
  • deleted_user

    Does Weather affect your narcolepsy?

    5
    I have noticed when it is overcast and the barometric pressure is high my narcolepsy is considerably worse. Has anyone else experienced this.
  • deadtired

    Alone

    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...
  • Queen_Bash

    A Driving Train Wreck- HELP NEEDED

    8
    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...
  • alexisdanielle

    Just wish people could understand sometimes

    9
    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...
  • 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...