24 replies to this topic

[Marcianna]

That is a great idea. I am going to run it by my client. She has a deadline that I have to meet, so it might interfere with that. I both love and loathe deadlines. You're more productive, but you're also quite stressed. That said, I think she would like the idea of having it combed over by several PWN's. I would do it if I were her.

It is a good idea.. good thinking Sunrisemoon.
We are all usually very careful because so often we are misrepresented in the media. Im sure It would be much more effective also if it was approved by someone with N. My new Doctor (who is awesome by the way) would be an excellent source for that sort of thing. Not only is he a great doc, he also has Narcolepsy. So best of both worlds in one. PM me if you are interested. I will get his contact info to you. =)

[Lais02]

Considering PWN have such completely different stories, this book might be a wonderful teaching tool for doctors. Too many sleep doctors don't get it. Maybe if they took the time to read a collection of stories they could better diagnose N. The textbook N is not what we each have... we each have our own variety.

[sleepless sleeper]

[Total SIDENOTE here, but does anyone know if it's feasible for a PWN to go white water rafting? I really wanna go, but I'm hesitating. I've checked with several companies but they don't know what N is and so can't help...]

eww, did you go? if not, just don't laugh and look over the edges. don't scream too much and lean over the edges, either.

[Andrea Egan]

Considering PWN have such completely different stories, this book might be a wonderful teaching tool for doctors. Too many sleep doctors don't get it. Maybe if they took the time to read a collection of stories they could better diagnose N. The textbook N is not what we each have... we each have our own variety.

It's a nice thought, but the problem with sleep doctors is that the overwhelming majority might be better coined as "sleep apnea doctors." They don't bother with narcolepsy or other sleep disorders that are far more complicated and time-consuming in their diagnosis/treatment. They don't want the potential liability of prescribing and monitoring controlled substances.

You know, I thought that too. I went into sleep thinking that I could rid the world of naive sleep doctors, helping potential PWNs get properly diagnosed and receive better treatment. But I was wrong. They don't really care. If it isn't OSA, they won't blink an eye at you. I once stood up for a RBD patient that [the doctors I work for] wanted to write off as OSA and unintentionally put my job in jeopardy (because I'm supposed to be/act subordinate to them--doctors have egos). As it turned out, I was right; the guy was pre-Parkinson's. They sent him off to some neurologist...wouldn't even put the poor guy (who was beating up his wife in his sleep) on clonazepam. This is the unfortunate reality of so called "sleep doctors."

[Mike M]

It's a nice thought, but the problem with sleep doctors is that the overwhelming majority might be better coined as "sleep apnea doctors." They don't bother with narcolepsy or other sleep disorders that are far more complicated and time-consuming in their diagnosis/treatment. They don't want the potential liability of prescribing and monitoring controlled substances.

AMEN!

They don't really care. If it isn't OSA, they won't blink an eye at you. I once stood up for a RBD patient that [the doctors I work for] wanted to write off as OSA and unintentionally put my job in jeopardy (because I'm supposed to be/act subordinate to them--doctors have egos). As it turned out, I was right; the guy was pre-Parkinson's. They sent him off to some neurologist...wouldn't even put the poor guy (who was beating up his wife in his sleep) on clonazepam. This is the unfortunate reality of so called "sleep doctors."

Andrea, while I am glad that you shared this story (and SUPER proud of you for advocating for the patient), it frightens me to know end that my some of my greatest fears come to pass. I worry all of the time that many of the "sleep doctors" are only interested in OSA. Now, OSA is a HUGE problem, and I am thrilled that folks with it ARE getting treated. It is far more life-threatening than narcolepsy, but it is crazy that so many of us struggle to find even a decent sleep doctor who will even handle the basics of our cases. In fact, my faith in my own doctor hit an all time low last week when he did not even come in to talk to me because things seemed to be "fine." It is wonderful that you are a sleep tech who is watching out for folks that might get overlooked otherwise.