Narcolepsy

Home > Groups > Narcolepsy

Support group for people who have Narcolepsy, created by eHealthMe (http://www.eHealthMe.com). To join the group, do any of these: create a post to introduce yourself, ask a question, or simply follow the group.

  • Hello, I am researching treatments for my daughter...

    Hello, I am researching treatments for my daughter who has just been diagnosed with Narcolepsy with cataplexy. I came across this group and would be very interested in hearing about your experiences with L-Citrulline or anything else that you have found to be helpful. Thanks.

    Post created 2 days 21 hours ago

  • Hello, I am researching treatments for my daughter...

    Hello, I am researching treatments for my daughter who has just been diagnosed with Narcolepsy with cataplexy. I came across this group and would be very interested in hearing about your experiences with L-Citrulline or anything else that you have found to be helpful. Thanks.

    Post created 2 days 21 hours ago

  • Does this site help you not to feel so isolated wi...

    Does this site help you not to feel so isolated with narcolepsy

    Post created 5 days 8 hours ago

  • I have good insurance but lousy doctors. I was dia...

    I have good insurance but lousy doctors. I was diagnosed with narcolepsy a few years ago. I havent always had it because I had many sleep studies prior. I am not allowed to take the only med they have, my doctor said..because of my arrhythmia...which coincidentally is metroprolo. I see there are no posts here so I may never get any responses but I would like to hear from others who may have advice or are just dealing with the same.

    Post created 1 week 3 days ago

  • Xyrem and Histamine Intolerance

    Hello,

    I am titrating up on Xyrem (currently 3.0x2). After I take each dose, I feel like my mind is activated and kind of revved up, making it hard to get any sleep. I also suspect histamine tolerance (reaction to certain foods) and have been fighting a bronchial/sinus infection since I first started taking Xyrem (my daughter got sick around then, so it is probably just timing). Looking for any info to help me combat the mind activation and get some good quality sleep.

    Thanks, and happy to be here!

    Vanessa

    Post created 3 weeks 5 days ago

  • Hey everyone! I'm a 21 year old male who has strug...

    Hey everyone! I'm a 21 year old male who has struggled with narcolepsy without cataplexy and nocturnal enuresis my entire life, to a degree the narcolepsy part Is managed, but me nor my healthcare professionals have been able to solve this issue. My brain never triggers to wakeup when urination is required and I am at my whits end. Any advice or help would be great

    Post created 1 month 1 week ago

  • This causes me serious embarrassment wherever I go...

    This causes me serious embarrassment wherever I go. It's been affecting my social life, but the one that kills me is the embarrassment at work. It makes friends desert me. It's a difficult life to live knowing that I can doze off without realizing, and no matter how brief the sleep, I end up with flatus.

    Post created 1 month 1 week ago

  • I have been on suboxone for 9 years and I have hea...

    I have been on suboxone for 9 years and I have heard it can cause sleep issues I am zoning out a lot fall asleep in the middle of activities I am so concerned as I have children and I am afraid for their safety and mine and others I find myself being wakened by my mom as I live with my parents she finds me passed out on the floor a lot any help with this is appreciated

    Post created 2 months 3 weeks ago

  • I haven't been diagnosed with CAPD but I am 99% su...

    I haven't been diagnosed with CAPD but I am 99% sure I have it.

    Post created 2 months 3 weeks ago

  • Satisfaction

    I started taking modafinil ( https://modafinilxl.com ) for narcolepsy and effects of sleep apnea. He working very well. My sleep improved and felt refreshed in the morning, but I would get these sleep attacks throughout the day when I was not engaged in an activity. My doctor put me on 200 MG. After an hour, my sleep attacks reduced significantly. After a month and a consult with my doctor, he put me on 400 MG (2 tablets of 200 MG). I take two tablets in the morning and I do not have any sleep attacks. I got approval to take one tablet in the morning and prior to lunch take the second pill, and I noticed it takes me longer to fall asleep.

    Post created 3 months 4 days ago