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Hi everyone 👋🏻 Wondering if anyone else here has type 2 narc? (Narcolepsy without cataplexy) I’ve tried researching it but even less is known about type 2 than 1. Just going through the motions..
I was told I have narcolepsy from a doctor but never had the sleep test to see what kind I have!
Research opportunity for Narcolepsy Type 1 with Cataplexy - male patients. This is a 30-min online survey, and the compensation is $45.
Please sign up at the link below to receive an email invite to the survey.
https://rarepatientvoice.com/MNTutherow/
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 am currently living with my parents because I can not afford to live on my own. There is no other options for me right now but I just do not know how much longer I can put up with my mom. She never has understood and I don't know if she ever will.
Ask Her if She would be willing to go to the Dr. with You. Maybe he/she can explain the situation.
I'm not a mouth breather so this taping would not allow me to discontinue cpap therapy. I think I may be the only person who has never had any issue using cpap. The only time I've ever not used it was… read more
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 was diagnosed in 2015 which was my first and only test; should a patient be tested again after so many years
@A MyNarcolepsyTeam Member Hello 👋🏾
I am also waiting for another study
Which is scheduled for August.
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
