Quick Links
About MyNarcolepsyTeam
Powered By
Does Any One Eles Have Narcolepsy1 And Sleep Apnea?
i find that having narcolepsy makes the cpap not worth the anxiety, it does not help me
I have narcolepsy 2 and sleep apnea. Using the CPAP didn't make a significant difference in daytime sleepines but it's better for my heart to use it. So, I do, even though the masks irritate my skin.
Would You Say You Have Good Days And Bad Days With Narcolepsy?
I have been on Modafinil for over a year. My doctor finally sent me to a sleep specialist and I will have my sleep study and mslt in a couple weeks. I never feel fully rested, but there are some days that I can’t go more than 2-3 hours without a nap. I get very drowsy and my eyelids get heavy. On my bad days, this happens every 2-3hrs all day long.
How Well Does Modefil Or Provigil Work For EDS And /or Cateplexy?
Would You Recommend People With Narcolepsy Not Have Kids If They Are Undecided If They Want Kids? If They Choose To Have Kids Any Tips?
Im a young man in my 20’s and I'm married I don’t have any yet. Id like some my wife says she definitely wants some but i worry so much about my narcolepsy and how it would limit my ability to take care of them. I wouldnt want to hinder her or my children. Especially financially or just securing their safety. I don't want to put all the responsibility on my wife because my narcolepsy makes my reliability inconsistent. Any response or tips is helpful.
Definitely go ahead and have children! There are many treatments for narcolepsy. Although it is a lifelong condition, it doesn't need to run your life that long! My children are older, but I have my… read more
What's The Worst Situation You Fell Asleep In?
Anytime I am driving is a bad situation, waiting for a doctor's app via Zoom, on a test that was really important.
Can Someone Please Help Me Understand Why Narcolepsy Takes So Long To Diagnose? What's Wrong With Our Society?
Why on earth does narcolepsy take so long to diagnose? I've been trying hard to find some sort of logical, rational explanation, some sort of justification, but I can't find it. I know it's not a well-known disease, I know we can't expect people to know there's some sort of neurological issue with lack of orexin and an autoimmune reaction behind our symptoms, but although friends, family, doctors may not know the exact cause of the symptoms, I think they know and can see we are not well and are… read more
Hello, Rina- I don't know how your lumbar puncture went, but... People with Narcolepsy Type 1 will indicate very low levels of Orexin/ Hypocretin and usually have cataplexy
Now the tricky part-… read more
Who Experience Falling Asleep At Any Given Time Or Place? I've Fallen Asleep At Work Sitting Down On A Crate, Passenger Seat Riding& Etc
I fall asleep at work, in my car, on my porch, every where
Does Anyone Know How To Start The Process Of Getting A Service Dog For Narcolepsy?
I had a 110 lb Weimaraner with whom I had an extremely close relationship. He slept with me and went every where I went. Not a service dog but very smart. He woke me up to take care of getting him… read more
Does Anyone On Here Have An At Home Job? It's Been Hard Driving To Work And Staying Awake. Started Wakix So I'm Hoping That Will Help Soon
I have narcolepsy with cataplexy and it's hard to do certain jobs. I have to keep busy constantly
I know the vibes all too well
Does Anyone Else Take New Nuvigil?
I take the new one AR Mod and work a job that I get to around 11 and leave at 3:30 or 4 so I don't fall asleep driving. I still have some off days. But at least can get to my job. My job knows I… read more
