Narcolepsy

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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.

  • 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 3 days 11 hours 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 6 days 5 hours 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 1 month 2 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 1 month 2 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 1 month 3 weeks ago

  • I have been taking a combination of medications fo...

    I have been taking a combination of medications for several disorders tha I suffer from. I am concerned because I have a friend with tardive dyskinesia which she believes she got from taking Xanax, and my great grandmother had it also, but I have no idea the medications she was on at that time. My boyfriend stopped taking Seroquel because of the correlation between it and TD. I know there seems to be a link with other medications besides Seroquel and Xanax, so I am trying to be sure I do not start taking anything else that may have a strong possibility for causing this condition.

    Thank you very much for any information you may be able to share with me.

    Question created 2 months 2 weeks ago

  • Hello everyone. I am a 58 year old female living ...

    Hello everyone. I am a 58 year old female living in SW Virginia. I was hit crossing the street in 2003 and was unable to work until 2009. I worked at home taking cust service calls from Oct 2009 until October 2013. Was feeling good and no health issues except in 2012 I had surgery for carpal tunnel, torn meniscus in knee and skin cancer removed on face. Then in June 2013, I went to sit down and chair collapsed and twisted arm behind me and threw me to the floor on right side of face. Next day I went to Dr feeling like a bad whiplash and arm hurt. Saw many different Dr's and was told I had TMJ so I got a bite plate made. Pain kept getting worse and neck started to spasm and grab. Got migrane that lasted 8 weeks and base of skull felt like it was in vice grip. Finally in April 2014 I was diagnosed with a 40% tear in rotator cuff and cervical dystonia and started Botox injections. Then I developed cranial dystonia with blepharospasm in my eyes, Oromandibular dystonia, laryngeal dystonia, dysphagia and my esophagus is spasmodic. I recently read about the trigeminal nerve and wonder if that's part of my too.

    It's so crazy how a quick accident like a chair breaking can change your like forever!

    What's really crazy is the chair was in a nurse's office where my mother was being transferred from hospital to for rehab from a fall.

    That's my story and thanks for letting me share it with you.

    Post created 3 months 2 weeks ago

  • Hi my name is Sammy does anyone take this and does...

    Hi my name is Sammy does anyone take this and doesn't help anybody

    Post created 3 months 3 weeks ago

  • Hi have secondary narcolepsy due to a spot on my b...

    Hi have secondary narcolepsy due to a spot on my brain recently I started taking trimethylglycine does anyone else take this product I also take Ritalin which I don't think works great any advice would be greatly appreciated thank you

    Post created 3 months 3 weeks ago

  • Did this help with anyone's tumors or narcolepsy p...

    Did this help with anyone's tumors or narcolepsy please let me know

    Question created 3 months 3 weeks ago