Welcome to our little club. Sorry you too are afflicted with this pesky issue but be thankful there's a therapy that can address but not necessarily cure the condition for you.
I've never been officially been diagnosed with Irregular Delayed Sleep Wake Phase Disorder
but after reading about it, it seems like an old friend.
You didn't mention what they assessed your AHI value at so the "severity" of your Sleep Apena can't be used for relative comparative purposes.
My sleep pattern is all over the map too so I suspect I might be polyphasic. I usually only get 30-180 minutes of sleep at a time, more frequently in the 90 minute range. One of the things I do is to use the machine whenever I lay down, be it for just a rest (sometimes I nod off for a nap) or to actually attempt to acquire sleep.
Using only the information in your profile indicating your pressure setting to be from 4 to 20 cmH2
O it might be useful to have an idea what your normative pressure levels average.
Some "Masks" seem to respond to different pressure levels better than others. The higher the pressure you require, it seems the fewer mask choices are available to you.
Quote:Each mask I have tried has major flaws which I have not been able to get used to.
There's no easy way to say this; it just takes time to become adjusted to having a foreign object attached to your face whenever you sleep.
Quote:Some cause pain while others are uncomfortable, loud or flat out don't fit me.
Comfort is important! With that it's important to find a mask that's both comfortable and are therapeutically functional for you.
The sound issue might be controlled with ear plugs or noise canceling head phones with no sound. I used to get my ear plugs at a gun and ammo shop when I used them.
Quote:When I first got my machine I spent a great deal of time wearing it during the day to get used to the sensation of positive air pressure. I think I can get used to the pressure with time if I could only find a mask that does not make me rip it off in frustration or pain after several hours of trying to sleep.
Can you articulate exactly what frustration
you are experiencing. Yes I realize you stated earlier they are uncomfortable, loud or flat out don't fit me
Quote: I have even tried using my CPAP when I was awake for 57 hours and still could not fall asleep, even cycling between my different masks. I have also tried to associate my therapy with pleasant thoughts and positive affirmation that this will help improve my quality of life to no avail.
If I were to guess, it sounds like your desperately trying to conform. With that, we both know, sometimes in the best of circumstances, the best we can achieve is to just lay in bed and count the holes in the ceiling tiles. I can't tell you how many times I've counted those all those holes over and over and over. (yeah, yeah, yeah, if I could try to sleep in the Great Albert Hall, then I'd know how many holes it takes to fill the Albert Hall)
For me it's not a matter of trying to go to sleep, it seems to be more of an environmental thing.
If the TV i s on at night and I set a sleep timer on the TV; when the TV goes off; I sense the flickering of the light has ended and it wakes me up.
Sometimes similar things happen with the radio.
I unplug the phone and turn off the cell.
The computer is off so it doesn't make any noise.
Maybe you'll need to disable the doorbell, tape the light switched down when you go to bed.
Similar to srlevine1
, I too was responsible for the support of many large world wide systems which required me to be "on call" 24 hrs of every minute of my life. It was easy for me because of as you've described it, Irregular Delayed Sleep Wake Phase Disorder
gave me unbelievable sustainable run time to deal with the crisis at hand when my peers would require sleep after 16 hrs, I just kept going.
But the Irregular Delayed Sleep Wake Phase Disorder
is a double edge sword. For me, I'm deliberately trying to achieve small accomplishments to achieve longer and longer periods of sleep.
made mention of hypnosis, that might work.
Hang in there, we're all in this together and as smart as the sleep doc are, I'm continually learning more here than I can possibly get from a visit with my sleep Dr.s
As for your:
Quote:Irregular delayed sleep wake phase syndrome and finding a doctor that knows even a little about it.
If you are fortunate enough to reside near a medical school, they might have a dedicated sleep disorder group. I'm that fortunate, and while I'm truly blessed with having a really good sleep Dr., it's the sleep technician in his office that is the jewel in his crown.
That's because my sleep tech, seems to have at his avail literally every mask under the sun. Mine took the time to sort out which mask would work best for me considering my pressure settings, how I slept and 13,000 other things to consider. Once my sleep tech figured out what mask would likely work best for me, the Dr. put forth an Rx for that specific mask. ,
I'm still trying to get some sleep...