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How Do People Cope? Are Doctors Helpful, And Do They Understand Narcolepsy?
How Do People Cope? Are Doctors Helpful, And Do They Understand Narcolepsy?
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!
Dear Five Star, sorry to hear that your family are not that supportive. Trouble is, I think, that there is not enough known about narcolepsy. I have seen a documentary on the tele (here in the U.K.)… read more
Can This Be Believed?
Can This Be Believed?
Emmanuel Mignot wins Breakthrough Prize for discovering cause of narcolepsy
I Need Medication Advise
I Need Medication Advise
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
Glorious Dream
Glorious Dream
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
Be careful what you ask for! My deceased mother was the center of one of my dreams. It was so real that when I woke up, I got dressed to meet her and my sister (she lives 1,500 miles from me!) for… read more
Do You Consume Or Avoid Caffeine?
Do You Consume Or Avoid Caffeine?
Does Anyone Else Change Position?. Your Head Starts Normal. When You Wake Up You Are Sideways And The Pillow Is On The Floor.
Does Anyone Sleep Over 13 Hours? Sleep Or No Sleep Has No Winner For Narcolepsy!
Does Anyone Sleep Over 13 Hours? Sleep Or No Sleep Has No Winner For Narcolepsy!
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?
Do You Experience Insomnia With Narcolepsy? Any Ideas To Help With Insomnia?
What Experiences Do You Guys Have With Xyrem... Does It Work?
What Experiences Do You Guys Have With Xyrem... Does It Work?
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?
I take Xyrem and it has really helped me get the life I never thought I could have. Just be careful with it and feel free to call the distributors for any questions! They're super nice!
