Any Clues?

Lee Lee and others - I should probably point out that my experience with CPAP may be unique, in that I have UARS rather than OSA. My diagnostic study had 1 obstructive apnea, 2 hypopneas, 1 central apnea - and 148 respiratory effort related arousals. I have had years of bad sleep, but very little effect on my general health beyond fatigue, and some things that may be connected such as irritable bowel and sensitivity to cold. I am fatigued, easily distracted, and irritable, but my health is quite good. I actually have naps every once in a while where I sleep well (seems to be a combination of neck position and low-humidity) and I know I don't have any irreversible brain/neurological problems. Feeling really good is a possibility, and that is what I want to get. I know irreversible problems from apnea may explain why other people are still tired despite CPAP, but it is not a good explanation for me.

My titration studies demonstrated huge amounts of sleep fragmentation at every pressure that was tried in my two titration studies so far (6 - 18 cm). There was never any evidence that CPAP made my sleep better. It may have fixed by breathing issues, but at the expense of some other part of my breathing system. What is truly intriguing, and what no one has attempted to explain to me, is why I have less disruption during REM sleep than during non-REM. This is completely contrary to the general ideas about how CPAP helps your sleep breathing, as my most recent study opined that at the prescribed pressure, I had "REM sleep in the supine position" as if this is the end-all-and-be-all of CPAP. This and other issues convinces me that CPAP is blunt treatment, a one-size-fits-many-but-not-all treatment.

Lee Lee - did you ever see the hypnogram from your husband's study? Did it show a lot of sleep fragmentation (that is, frequently changes in sleep stage back to lighter stages of sleep) despite what were described as "effective" pressures? How did he feel after his titration study? Did he ever have a situation where he felt an improvement? The data from the CPAP machine is important, but the sleep staging is a very important part of the picture, too.

Lee Lee, I'm curious about your mention of your husband having lots of centrals on his study. Was that the diagnostic study or titration? And how many is lots? If they were significant and still an issue, he may need a different machine.

To those having much trouble in the first several weeks, it is good to pursue any possibility that the treatment as it is may not be effective or even making you worse. Those who have been around a while can skip this, but there's enough new members that it bears repeating. My original titration had me at a pressure of 10, but turned out I needed 12. My bigger issue was not understanding the ramp feature. My ramp pressure was set at 4 for a lengthy time (30 min maybe?). I was so fatigued, I was asleep before my head hit the pillow, but woke up in a very few minutes feeling like I was suffocating. I had been told to just hit the ramp whenever I woke up, so I did - many, many times a night. I didn't realize that repeating the ramp all night kept me in a perpetual state of non treatment. Neither the doctor nor the DME could figure out why my condition was declining so rapidly. First thing here it was suggested I increase my ramp pressure and decrease the ramp time. (Also found out that with some masks 4 isn't even enough to properly vent exhaled air.) Amazing how quickly I started seeing a difference with just these changes. Then there was the RLS/PLMD to deal with, so cpap didn't solve everything.

Sometimes it's just a matter of getting used to the treatment, but sometimes things really are not right or more is going on and followup needs to be pursued - however far it takes to find answers.

Kathy

All,
I haven't been able to get on the computer this week, but I just want to thank all of you that replied.
I'm convinced that something unusual is happening to my husband when he's on the machine, and he very well may have UARS. He was off o it for a week, and then he got a new mask on Friday. He was excited and wore it Friday night, and then last night.
He's a zombie today.....walking around with a "duh" look on his face. Kinda pale.
He was tired and sleepy before,when not on therapy, but today he is utterly wiped out. Now, to be fair, last night, he fell asleep on the sofa from 10:30PM to 1:30PM, masked up and then slept 4 hours and 30 minutes, then woke up, took the mask off and slept another 2 hours, un masked. Hi AHI was 6.5, with AI of 2.1. That's not THAT bad.
He normally sleeps about 5-6 hours.
I promised I would stop playing RT, and I'm better, leaving all this to him to figure out , but I admit, I am compelled to check his numbers. It's the detectived in me!
Thanks again for your support and for letting me vent.
Lee Ann