Narcolepsy
Questions + Answers
Ok Was It A Shocker Being A Adult Finding Out You Had Narcolepsy?
Ok Was It A Shocker Being A Adult Finding Out You Had Narcolepsy?
I was dynose for Narcolepsy at a young age. I had to deal with it and on my own learned how to help myself. When in my 40tys I found out What I had and got on med. I would say being young in some ways coping was a learn g thing not saying it's easy young or older , but for some reason I would think it would be crazy finding out older. What you think - the ones that got it later in the years?
What Analogy Would You Use To Help Someone Understand What It’s Like To Live With Narcolepsy?
What Analogy Would You Use To Help Someone Understand What It’s Like To Live With Narcolepsy?
A lot of well meaning people will tell me I dont exercise enough, adapt a healthier life style. Did all that but then I became overwhelmed with life events recently. I used to fall a lot cataplexy, I… read more
Do Stimulants Help?
Do Stimulants Help?
When I was first diagnosed beginning of high school, my doctor had me try a couple different treatments. One of them was Ritalin, but I was wary of pills and didn't want to go that route. College has really been testing my limits, and I'm starting to fall behind. Do stimulants help any of you guys? Which kinds help the most? Do side effects outweigh the pros? Thank you!
Did Anyone Else “diagnose” Themselves First?
Did Anyone Else “diagnose” Themselves First?
Has anyone else figured out that they had narcolepsy before their doctors? I always have trouble getting my doctors to truly listen to what I’m saying, and for them to not say that EVERYTHING wrong with me is because of my anxiety/mental health. No one would listen, so I talked to my psychiatrist and told HIM I was pretty sure I had it, told him my symptoms... HE referred me to a sleep specialist, I did the studies, and now it’s confirmed. I’m 32. I’ve been having symptoms since I was a kid. 8th… read more
I Get Stuck In My Sleep. It Scares Me!
I Get Stuck In My Sleep. It Scares Me!
I get stuck in my sleep. I can open my eyes and I can see around the room but it's like I'm being held down and my breath is being taken from me! I try to move my body, sometimes I think I am! when my friend stayed over I was trying to kick her cuz I couldn't wake up even though my eyes were open and I could see the room I was being held down and my brother was being taken it was hard to breathe the hardest part to say, I'm going to see right now. sometimes it feels like I'm being held down… read more
Best Days
Best Days
I want to know about one of your best days you have had with your narcolepsy. Tell me how you felt, who you were with , everything.
How Does Narcolepsy Impact You Emotionally?
How Well Does Modefil Or Provigil Work For EDS And /or Cateplexy?
Does Anyone Here With Diagnosed Narcolepsy Also Have Fibromyalgia? What About Adult ADHD?
Does Anyone Here With Diagnosed Narcolepsy Also Have Fibromyalgia? What About Adult ADHD?
I have fibromyalgia, chronic fatigue syndrome, Graves’ disease, depression and lot of other stuff wrong with me! Take lot of meds for everything! Have sleep apnea. Use Cpap and oxygen at night . But… read more
Does Anyone Else Deal With People Who Don't Believe Narcolepsy Is A Real Disease?
Does Anyone Else Deal With People Who Don't Believe Narcolepsy Is A Real Disease?
I have been diagnosed for almost 3 years now and I still have family members that believe I'm just lazy. On my bad days I can sleep 19 hours a day or more. If I'm cold I go into hibernation mode and can't wake up til I warm up and some of my family act like I chose to sleep. Luckily my husband isn't like that. If y'all had similar experience how did u deal with it?
