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Has Anyone Else Done Mouth Taping To Get Off Their CPAP Machines? Several Of Us Are Doing It And No More Cpaps! Lots Of Info On YouTube.
I'm not a mouth breather so this taping would not allow me to discontinue cpap therapy. I think I may be the only person who has never had any issue using cpap. The only time I've ever not used it wasā¦ read more
What Is "John 3.16" All About ?
I don't think it has much of anything to do with narcolepsy.
I Need Medication Advise
Iāve been taking 15mg of adderall 3 times a day. Most of the time it works, I just hate the crash at the end of the day and I feel like it changes my personality. My Dr. Called in Sunosi but my pharmacy has to order it. She says I can just take Sunosi and stop adderal. Has anyone tried this? Iām afraid Iāll have adderal withdrawal. Iām afraid it wonāt work. Neither modafinil or armodifinl worked for me. I hate figuring out what works to keep me awake during the day. Any advise is greatlyā¦ read more
Social Determinants Of Health
What do you wish your doctors office better understood about your social situation and itās impact on ability to get healthcare and follow a medication plan?
What resources do you wish your doctor could offer to help you live a better healthier life?
My experience is that MOST doctors know nothing about Narcolepsy. If you are frustrated or unhappy with a medical provider, I suggest you schedule interviews with several other doctors to whom youā¦ read more
Does Anyone Have ādroopy Eyelidsā From Narcolepsy?
I had droopy eyelids 40 years ago. This lasted months or longer. Since there several possible causes including disease, I saw an ophthalmologist. I wanted treatment for the cause not treatment for theā¦ read more
How To Get A New Doctor After A Move To New State To Prescribe You Medication Youāve Been Prescribed To For The Last 21 Years?
Diagnosed with narcolepsy 21 years ago. Moved to a new state. Had to apply for Medicaid which took time but once approved I finally was able to get into a sleep doctor. Iāve brought with me documentation of every prescription Iāve been provided for the past 21 years. Yet she refuses to prescribe me the medicine I need to survive until another sleep study is performed. She knows I only have 3 pills left. She said she would expedite the sleep study however as soon as they can get me in isā¦ read more
Boy, it often seems that way , doesn't it? I moved to another state after a Medicare advisor said I would have no difficulty getting qualified for Medicaid in my new state. I took the plunge andā¦ read more
Narcoleptic Personality? Does It Describe You?
Narcolepsy can be associated also with less conspicuous problems, including introversion, sorrowfulness, feelings of inferiority, impaired affectivity modulation, emotional lability, irritability, aggressiveness, and poor attention that some authors have defined as the ānarcoleptic personalityā (4).Mar 18, 2020
I NEED to share this: my violent dreaming ALWAYS involves family, and is so terrifying I can hardly bare to speak of it. O er the last 2 years, the violence has evolved to sadistic trickery: myā¦ read more
I Attended A Wedding And It Knocked Me Out For A Week. Has Anyone Got Any Tips On How To Navigate Social Situations?
Thanks everyone - I'm beginning to function again but it feels like the last few weeks have been a blur!
Has Anyone Had A Lumbar Puncture To Check Your Hypocretin Level?
Has anyone had a lumbar puncture to measure your hypocretin levels? I am seriously considering asking my doctor if I can have this test done since I can't seem to sleep during MSLT studies. Since my last study didn't reveal anything, I cannot get medical treatment. My symptoms are textbook type 1 narcolepsy:
This might be more akin to idiopathic hypersomnolence, but I NEVER EVER feel awake. EVER. Nearly every morning is a struggle with sleep inertia. I could easily sleep 12 hours if I had theā¦ read more
My doctor says that he doesn't bother with MSLTs anymore because sometimes it has taken up to a series of five before people demonstrate narcolepsy because sleeping in a strange place is not thatā¦ read more
Can Sex Orgasum For Women With Type 1.cause A Cataplexy Event?
Yes. It's called Orgasmolepsy aka Cataplexy due to Orgasm.
It's unknown how many NT1 have that, since it is rarely asked by Doctors (and I'm guessing the majority of them don't even know that itā¦ read more
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