Quick Links
About MyNarcolepsyTeam
Powered By
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.
I hate to answer this question because my BEST DAY is Thursday is my first day off I sleep the whole 24 hours my children are grown I have a dog I do take her out a couple times but I do not get out… read more
I don't know - selecting people for my "team" seems playing favorites with people I don't know. That seems weird to me.
I regret your negative experience Lisa. CBD can be purchased locally (my home in sw La.). My online purchase came from Able Farms. They have a "CBD Sleep Dropper". My current prescription sleep… read more
Don't fight it, go with the flow, and great tips above.
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
I have a teenager with narcolepsy who is really struggling. He has had averse reactions to medications and has a hopeless attitude. I can see how much he is struggling and suffering. When I try to help him and make suggestions, he gets angry with me and frustrated. He has a lot of supports in place but he is in the worst place right now. How do I support him and support myself at the same time? It is so hard to be a mother and feel this helpless.
It sounds like he is suffering from depression also. That needs to addressed so he can feel better. Depression makes you tired during the day also complicating narcolepsy.
I’ve have sleep apnea yet after 21 years of dealing with sleepiness I’m getting frustrated on which sleep disorder is happening. Starting to have a paralysis upon awakining each morning k
Start with a day & all night sleep study with sleep doctor
Has anyone had experience or know about biofeedback headbands that monitor sleep cycles and provide binaural beats that can help regulate sleep cycles? I came across an article about a Colorado engineer that developed a device foe his teenage daughter that was diagnosed with narcolepsy. He marketed the device under the name Sleep Shepherd Blue. I started trying to find the device and came across another called Dreem. Seems that both devices were purchased and removed from the market by someone… read more
I researched these as well, and came to the same conclusions. I did find a Dreem 2 for sale in India. https://india.dreem.com/. I have not reached out to them to see if they will ship to the US… read more
