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How Do You Like WAKIK?
I’ve been on Armodifinil for 8 months and have tried Adderll and Ritalin on top of it but I’m allergic to the armodfinil and Ritalin and break out in hives. My doctor is going to put me in Wakik. Does it work for you and what is your thoughts on it?
I take 1 pill 17.6mg I think, and it works fine for me. I also take 75mg of Sunosi.
Is It Possible To Have Evening Sleepiness And It Still Be Narcolepsy
i have sleep attacks day and evening .
Can This Be Believed?
Emmanuel Mignot wins Breakthrough Prize for discovering cause of narcolepsy
https://med.stanford.edu/news/all-news/2022/09/...
Yes BUT this is only true for type 1 narcolepsy. Scientists now believe that type 1 narcolepsy could be autoimmune in origin due to a gene found in 99% of NT1 patients. (for those interested, HLA… read more
Does Anyone Know A Psychologist That Is Knowledgeable To Address Narcolepsy 2, ADHD, & Anxiety In The Austin, Tx Area?
Hello Jan-
Most folks I know with narcolepsy & other conditions you mentioned (including me) seem to have their best luck with a psychiatrist, not psychologists, as they are more specialized to those… read more
Advocacy Work
Interested in advocating for better social awareness, medication/care access, and research on conditions. Anyone with any tips on how/where to get started?
Check with your local ARC Association Retarded Citizens; they are in constant need of direct support staff
Before The Internet....
Did anyone else start experiencing sleep paralysis before the internet? What did you think was happening? How long was it before you told anyone and how much longer till you spoke to a doctor about it?
I just turned 53 years old and I've had sleep paralysis since I was about 10 or 11. I would have reoccurring nap nightmares of Frankenstein chasing me. About 10 years ago I started having reoccurring… read more
Does Anyone Suspect They May Have Non-24?
My doctor laughed out loud when I suggested it but I described what I felt almost the same way the blind guy in the commercial over ten years before I ever heard of it. Obviously my doctor dismissed it out of hand because I'm not blind.
I have said this before as well! Do not feel like I live on a 24hr clock, feels like I cycle on a 36hr after trending my sleep patterns. I think because we have narcolepsy by default the circadian… read more
Has Anyone Been Diagnosed With Chronic Fatigue Syndrome In Addition To Narcolepsy?
Yes, I have fibromyalgia, Chronic Fatigue, sleep apnea and use oxygen too! Plus Narcolepsy and a lot of other things wrong with me!
Virtual Neurologist Doctor Recommendations?
I feel very limited with the doctors that are "in network" and within driving distance. Does anyone have any recommendations on a good neurologist that specializes in narcolepsy that does virtual appointments?
I was told that you have to go to California or New York. There is no one near me that is a good doctor. I was diagnosed by a neurologist in NC in 1983 and since then I have just kept renewing my… read more
Hello. My Name Is Alex And I Live In Greater NYC Area.
I was looking for local / virtual support groups that meet and discuss IH (my condition; effectively treated exactly like Narcolepsy). Also wanted to find help in career change after working for 20 years and stopping about 2 years ago.
I thank you in advance and am very happy to join your group.
Hello Alex,. I apologise for letting so much time go by. If you haven't found the
help you were looking for, please let Sonja, myself or this team know if can help. Godspeed
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