I think that people here, Wales, do not understand about narcolepsy. It is certainly very unusual and I have never met anyone with the same condition. The consultant, who originally diagnosed it and was very supportive, sadly left (not because of me!!)and my doctors here don't seem to understand. One even told me that I should not have a sleep during the day! Thankfully, my family and close friends are supportive but, I am sure, a lot of people think I am lazy!
Emmanuel Mignot wins Breakthrough Prize for discovering cause of narcolepsy
I’ve 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? I’m afraid I’ll have adderal withdrawal. I’m afraid it won’t work. Neither modafinil or armodifinl worked for me. I hate figuring out what works to keep me awake during the day. Any advise is greatly… read more
Due to my narcolepsy, I have bad dreams and occasional nightmares EVERY night. They are the bane of my life and I hate going to sleep. They color my days with pain. Last night I had an incredible dream of taking a wandering drive with Tim (who is deceased) that turned into a rural heaven. The single lane dirt road was lined with heavy growth on both sides, mass profusions of lilacs, hydrangeas of all colors, calla lilies, white striped with red clematis dangling from the tree, tall delphiniums… read more
Since diagnosed with Narcolepsy with cataplexy in 2018, I would sleep for a total of 16-18 hours over the weekend just to get rested up for the upcoming week. Now I've been sleeping approximately 10 hours if I had a day off. I still find myself dragging myself out of bed just to eat and try to be a human for a day. Does anyone hold a extensive amount of hours sleeping after working full time, raising kids and trying to just make it through the week?
My doctor is going to start me on Skyrem (Xyrem with less sodium) and I was wondering what people's experiences are with it. Does it work well? Does it cause any negative side effects? Do you still need to take other meds to fight day time sleepiness?
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