Is there anyone like me here??

Are you in Iowa Ogre... or just a passerby?

And yes I know what RAGBRAI is, even though I've never ridden it.

Ogre wrote:It took me 22 years to get to the place I am today. And I know it won't be fixed overnight, just getting a little nervous that nothing will change.

Ogre,

I have been a 'hose head' for about a year now. I know that I had issues going back to 1988, and was having problems staying awake at work as far back as 1996, and trouble with meetings as far back as 2002. It got so bad in 2008 that I was no longer able to work, and driving was getting dangerous. I was pretty worried that I might no longer be able to earn a living, and that my hobby of taking road trips was finished. I was backed into a corner--CPAP pretty much had to work because I was almost out of options.

I ended up being pretty lucky. I found a fantastic sleep doctor, a great sleep center to work with, and a DME that treated me fairly. While I had a number of issues getting used to the CPAP, treatment worked for me from day 1. It is like someone flipped a light switch and suddenly I have my life back. I know it takes longer for many people, but it does happen, and you can have your life back, too. OSA can take your optimism away, and it can be a challenge to get it back. It is worth the effort, and I am certain that you can look forward to better days as you get your treatment dialed in.

-john-

Cflame, yes, I am in Iowa, Palo to be exact. RAGBRAI is an experience you just have to.... well, experience. I always had a great time from what I can remember, lol.

Since your girlfriend is an RN, let her know that some of us see patient data monitoring as the future norm in cpap therapy. Much like home blood sugar monitoring has become for diabetics.

Ogre, if it were me, I'd do two things:

1. I'd ask my bed partner to stay up all night watching me sleep with CPAP, to watch for either of these scenarios:

A. If I wear a regular nasal mask or nasal pillows mask (not a Full Face mask) -- does the bed partner notice me breathing through my mouth? Mouth dropping open?

B. If I wear a Full Face mask (delivers cpap air to both nose and mouth together) -- does the bed partner notice any drastic leaks from around the mask? Be sure bed partner knows what the normal exhaust vent sound of the mask sounds like.

Bed partner is going to have to actually stay up all night one night to observe. Just watching for a couple of hours and then going to sleep, or waking up a few times during the night to take a quick sleepy look at you, isn't going to be good enough observation. Gotta be an "all night" observer. Hey, it's for only one night!

If bed partner reported leaks, I'd work on trying to control the leaks better. Come back here and ask about that if you don't find solutions pretty quickly with a search on this forum. Hanging the hose up where it won't tug on the mask when you turn over or move your head is sometimes a good start for leak control, especially if you happen to be a toss'n'turn sleeper:
LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

If mouth breathing or mouth air leaks are a problem and you can't find a Full Face mask to sleep in comfortably, there are many discussion topics dealing with stopping mouth leaks:
LINKS to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

If bed partner reports that there don't seem to be any unusual leaks, I'd go on to this:

2. I'd start raising the CPAP pressure by a whole cm H2O at a time, giving each raise at least five days to see if I felt better. I'd also ask bed partner to let me know if any snoring was noticed. If snoring was noticed, I'd raise the pressure another cm right then, rather than waiting five days to do that.

The people in the study below were able to titrate their own CPAP pressure at home, without benefit of software or data showing in the machine window. It's easier to do it with software or LCD "overnight" data, but it can be done without either.
Link to a study that concluded, "yes."
"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?"
http://ajrccm.atsjournals.org/cgi/reprint/167/5/716