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.

  • Hi, I'm new here...was diagnosed with narcolepsy f...

    Hi, I'm new here...was diagnosed with narcolepsy first, but have had digestive issues since childhood...recently diagnose with crohn's also. I am just having a really hard time...its been pain every day and i can barely function i am so tired..anyone have any tips or advice?? Im open to any suggestions.

    Post created 3 weeks 15 hours ago

  • My 15 year was just diagnosed with both narcolepsy...

    My 15 year was just diagnosed with both narcolepsy with cataplexy and hypothyroidism. We saw a sleep specialist who just prescribed her medication and informed her she may never be able to drive. Thyroid disease runs in my family. Should we seek a 2nd option?

    Post created 1 month 5 days ago

  • I'm a 62 yr old woman with severe ankylosing spond...

    I'm a 62 yr old woman with severe ankylosing spondylitis (AS) & associated chronic back pain & fatigue controlled by Remicade every 6 weeks. I also take naproxen, baclofen & oxycocet for pain relief. Recently the side effect of sleepiness after 1 to 2 days has become uncontrollable narcolepsy. I fall asleep without warning with my iPhone in my hand whilst surfing the Net. The iPhone either drops to the floor or it hits me in the mouth if I'm lying down (painful!) Nothing helps my severe pain that doesn't make me sleepy!

    Post created 3 months 1 week ago

  • The tremors scared me for awhile and it also doesn...

    The tremors scared me for awhile and it also doesn't help I take meds that cause tremors. I drop small objects and can get quite frustrated.

    Post created 3 months 2 weeks ago

  • My husband was just diagnosed with Narcolepsy with...

    My husband was just diagnosed with Narcolepsy with Cataplexy, I believe he also has Dementia. We are going through more neurological testing. I'm trying to understand all I can about the changes my husband is going through.

    Post created 3 months 2 weeks ago

  • I have narcolepsy and was diagnosed over 10 years ...

    I have narcolepsy and was diagnosed over 10 years ago. Started on Provigil and when that stopped working 3 years ago, went on Nuvigil. Started to have neck pain about the time I started Provigil. Dr. Put me on Cymbalta about 2 years ago. I noticed that I have a hard time concentrating and I get irritable quickly. Anyone else with the same problem and what have you done about it?

    Post created 4 months 2 days ago

  • Hello I'm sure most of not all of you are adults h...

    Hello I'm sure most of not all of you are adults however my child is 13 and was diagnosed as a type 2 diabetic 11/16 however she was just diagnosed as a narcoleptic I feel her narcolepsy brought on the diabetes. I'm sure the narcolepsy was the underlying cause. Does anyone else feel the same?

    Post created 4 months 1 week ago

  • Just Curious

    If there is a linkage between Normal Pressure Hydrocephalus ("NPH") and Narcolepsy ("NPY") has there been any studies or even speculation as to the relationship between the two conditions?

    Same question as between NPH& sleep apnea?

    Last question---for now: Anyone with experience of NPH apparently successfully treated with a shunt and then two recurrences of return of the NPH followed by adjustment of the valve on the shunt. The valve is now "wide open" and the NPH is returning. My neurosurgeon does not have any other arrows in his quiver. Any suggestion as to future treatment(s)?

    Thank you.

    Matthew Forstadt
    Forstadtlaw@Gmail.com

    Question created 4 months 4 weeks ago

  • I have been diagnosed with narcolepsy since 2011 a...

    I have been diagnosed with narcolepsy since 2011 and have beef dealing with Parosmia since November

    Post created 5 months 1 day ago

  • Narcolepsy and Raynaud's

    I'm 20 and have had narcolepsy since I was 14. I've been on Xyrem for about 4 years. For the last year, I've been dealing with Raynaud's. Does anyone else have problems with taking Xyrem and now have Raynaud's?

    Post created 6 months 2 weeks ago