Newbie with S9 going back for follow up with Doc

[bob007]

Had my appointment and the doctor was great (and is a dead ringer for Sigourney Weaver). She said my AHI, Total AI and Central AI were within target (hovering around 5 + - ). I mentioned cpaptalk and said a lot of you were reporting much lower, which I'd like to attain. My pressure was set at 5-15, I had notched it up to 6 and she wants me to push it to 8. I did last night and reset the EPR to 1. Unfortunately her sd card reader wasn't working so I am waiting for the report as she had to take my card to a different office to read it.

I didn't do well last night and have a trend of waking up continually, or so it seems, between 4 and 6 am on most nights. I felt my best after a night with lower numbers, but I slept through the whole night on that occasion.

My numbers were up the past two nights (AHI 7-8, TAI 6, CAI 6) so hopefully this will improve. I am still getting used to wearing the mask and I know it takes awhile. I'm going to turn off my EPR and see if that improves things.

If only I could sleep throughout the night. :{

Bob

[echo]

Hi Bob,

Sounds like you're making progress! And good for you for taking charge of your own health! Just don't forget the mantra to 'change only one thing at a time and stick to it for a week'.

When I first started with CPAP I noticed that for the first few months my sleep was a LOT lighter than pre-CPAP, or rather I would wake up more easily. It just takes time to get used to the whole setup.

It could be that leaks and/or mouth breathing is waking you up, especially if you're hitting a particular stage of your sleep cycle between 4-6 am. The data from the machine can help you pinpoint leaks, so I hope you can get the sw/reader for yourself. If you're mouth breathing / leaking, you will have a very dry mouth/throat in the morning. Both will also explain why you don't feel so great in the morning.

Getting tangled up in your hose and/or the hose pulling on the mask can also cause awakenings. Find a good system for hose management. (I hang mine from the ceiling, others from their headboard; there are many possibilities).

There's something else I wanted to mention about the awakenings but now i've forgotten!

EDIT: Oh yeah, I finally remembered. Some people don't do so well on APAP because of the pressure changes (though many do perfectly fine, and in fact even better, with APAP). I fall into the former category. I keep waking up when the pressure changes. So again, between 4-6am perhaps you're hitting more stubborn apneas and the APAP is ramping up to stop them, waking you up in the process. Just something else to consider. Over time you'll probably get used to that too.

BTW your doc sounds great!

[bob007]

I'm new here so I'm not sure if I'm rambling too much on the same post.

Anyway, for the sake of encouraging some new CPAP users. I had another great night last night (21 days using the S9). I slept to about 5am, went to the bathroom, and fell right back to sleep. As I dosed off I thought to myself how the mask didn't seem so bad....hopefully I'm getting used to it I was even able to lay a bit face dow, which I like. My numbers were down again (AHI 4.3, TAI 2.1, CAI 2.2).

Think I'll keep the EPR off. I can see that this is going to be a game of perseverance. Kind of like golf. You play the game and don't do so well, but you hit that one great shot and it keeps you wanting more. With CPAP, a good night's sleep far outweighs any downsides...like having to get used to the mask, adjustments to sleep posture, etc. If I can get the sleep I need I'll press through this break-in stage.

Echo, thanks for the feedback. Very helpful insights which I'll keep on top of. I had read elsewhere about APAP vs CPAP. I think I'll give this another month and see where I am and then talk to the doc about change to APAP if needed. I don't believe I sleep with my mouth open as I never wake up with a dry mouth. The doctor called me up today to say that the S9 is so new their card readers down in Philly wouldn't work because they need a software update. So I'll check these things out with her when she sends the report. I'd really like to know what is going on with waking up, because most of the time I struggle going back to sleep....except for last night.

Bob

[JoyD.]

Echo said:

Getting tangled up in your hose and/or the hose pulling on the mask can also cause awakenings. Find a good system for hose management. (I hang mine from the ceiling, others from their headboard; there are many possibilities).

Bob, I also use a ceiling hanger which I love to manage my hose. But I recently bought a few inexpensive 3M Command Cord Bundlers that can be stuck on the wall and used with a stretchy ladie's headband to put the hose through - and will use that when I travel since it is very small and can be removed without damage to the wall.

Here are places to buy them for those who are interested:
Ceiling Hanger: http://www.amazon.com/Hillman-122418-Ad ... B000I0BVFU
3M Command Cord Bundlers: http://www.amazon.com/3M-Command-17304- ... B0000CCQKV

Here are photos from forum members of these hose management systems in use:

Ceiling Hanger - Thanks to Bellcrest: http://bellcrestboxers.com/cpapsetup.html
Ceiling Hanger - Thanks to Dieselgal: viewtopic.php?t=39303

Cord Bundler - thanks to "sfguy" (scroll down to photos). **Note: can also be used with doubled stretchy headband through the bundler**
viewtopic.php?f=1&t=38944&p=344470&hili ... to#p344470

Bob, I'll bring an extra Cord Bundler I have when I see you and the family in NJ in June : )

Joy

[echo]

That's sheer genius, thank you Joy! I always have the hose problem when I travel, and the blanket clip-on just doesn't work very well for me. Thanks for the links!!!!

[bob007]

Thanks Joyce!

The hose that came with my equipment must be shorter than most. I wouldn't have enough to use a wall hanger, so I'll check into that.

Over the past week I've actually had full nights of sleep without waking up. My numbers are all down AHI at or below 2, AI .6, CI .6. I have shown more leakage from my pillow mask lately, so I'm going to try to figure that out this week. I'm looking into the Mirage FX pillow mask as an option. I'm getting some pressure on my upper lip from the LT. I'd like to keep both actually. I called my sleep doctor about it and talked to her head nurse. She said if I want to try the Mirage FX that I should call my DME and have them trade out my LT for an FX and then come down to the sleep study center and they will sell me an LT for $15. That way I could have both masks. So I'm planning on doing that this week. The doctor has been great to work with. She is happy that I can adjust my S9 from home. Luck me, huh.

I'm starting to feel my energy level come back and the fatigue is lessening significantly. Marilyn can see a big difference. I have to admit, at night I stare at the mask and wonder if I can do this for the rest of my life. That thought passes, I put the thing on and as I've said I'm waking up much more rested. I'm looking forward to how things improve over the next several months. I'm growing more comfortable with the mask during the night but would like to see if the FX decreases the upper lip pressure.

Thanks again for all of your help and we are also looking forward to seeing you this summer.

Bob