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Living with Narcolepsy

I started showing symptoms of Narcolepsy when l was twenty-six. I am now approaching 68 and, fortunately, don’t have cataplexy. Every day is a struggle to appear normal. I have tried every narcolepsy medication available, and there hasn't been one with long-term benefits. I was in the modafinil trial, and it has never worked since it has been available. Xyrem worked well until I started sleepwalking and broke several bones. Now I need a shoulder replacement because of my last sleepwalking fall.
I have so much empathy for all of you who struggle through life. My life is more challenging now than it has ever been. I experience the depression, sadness, and grief many of you share. I wish I could say things will improve, but there is no guarantee.
For those of you wondering, yes, I have tried everything through the years. Acupuncture, well, you name it, and I have tried it


I’m new here!

Hi, my name is read2them. I'm looking for others who understand what it is like to live with chronic pain and always feel tired. I'd love to share ideas for coping with illness.

#MightyTogether #Depression #Fibromyalgia #Cancer #Narcolepsy #Arthritis #SleepApnea

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First time Posting #Narcolepsy

#Narcolepsy I have been dealing with narcolepsy since I was 23 and I am now 37. It is such a lonely experience. I have terrible sleep anxiety. One of the many things that stink about #Narcolepsy is not being able to really sleep at night unless I’m medicated. But what happens when you run out of medicine before you run out of month? That’s when the sleep anxiety kicks in and I just lay on my couch and feel as if I am going to shake out of my skin.

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I’m short on spoons these days. #SpoonTheory #Narcolepsy

I can really relate to the “ Spoon Theory. It helps me describe what living with narcolepsy is like to my family and friends. Anybody else like this? ….Spoon Theory summary from Wikipedia—— . It was coined by writer and blogger Christine Miserandino in 2003 as a way to express how it felt to have lupus; explaining the viewpoint in a diner, she gave her friend a handful of spoons and described them as units of energy to be spent performing everyday actions, representing how chronic illness forced her to plan out days and actions in advance so as to not run out of energy.

8 reactions 3 comments