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