Overwhelmed & frustrated

[Pugsy]

You need to figure out how to get into the clinical setup menu area. You are missing the special instructions for how to get to it..
Read the instructions here....also there is a video a the bottom of the page...it will help explain things
http://www.apneaboard.com/pr-system-one ... structions

For right now in terms of humidity setting.....go back to the "new system one humidification" (which will turn off Classic mode) and try a setting of 3 or 4...see if you get rain out with that setting.
The dry mouth we may have to address separately....you wouldn't be the first.
I don't know if you can skip the heated hose or not at this point.

Hose cozy...got any old socks? Cut the toes off a few of them and slide them over the long hose and secure with rubber bands or some sort of tape or little ties.

AFlex is the machine's exhale relief...there really isn't a good or bad setting...just whatever feels good to you.

Regarding waking up and the machine is simply off...sorry, I misunderstood.
When you figure out how to get to the clinical set up menu go find
Auto On
Auto Off
2 separate settings available...tell me what the settings are...choices will be either On or Off
so Auto On...has 2 choices On/Off
and Auto Off...has 2 choices On/Off
I would suggest that you have Auto On to the On position and Auto Off set to Off position for right now.

If you don't like the heat but want the moisture....check with your machine supplier about getting the heated hose attachment/upgrade kit....your insurance should pay for it. Otherwise $75 online because not only do you need the heated hose but a different power supply.
Trust me...don't panic about the "heated hose" part of things..you can set it for a much lower than bedroom temp and not have to sacrifice needed moisture to help with your dry mouth.
In other words...temperature of the air and the moisture delivered are independent settings and you will like it.

I will go look at your reports in a bit. Right now I just came in from outside to warm up..20 degrees outside and damn truck won't start and looks like a bad battery connection that I need to try to fix and I don't normally do that stuff.

Be back in a bit and will look at your reports....gotta go freeze my butt for a little while trying to fix batter connection.

[Pugsy]

Can you get me the detail nightly report for a night where you woke up suffocating after 2 hours? Where you say the machine was off? The summary reports you did don't really tell me much except your use is very sporadic and we already knew that.
So that it looks like this below?
I don't need the AHI graph or all those volume this and that graphs.
All I need is Events graph, flow rate graph, pressure graph, leak graph.
You can turn off the unneeded graphs in Preferences/graphs tab..just remove check mark from the AHI graph.
You can resize the remaining graphs a bit so you can get 4 graphs into viewing...just hover mouse at bottom of graph and look for little short double line and then click and drag
Don't forget to include the AHI graph breakdown on the left
You will need to just do a screen shot as I don't think you can do a pdf of the detailed report.

[olindacat]

Olind...I'm so sorry you are feeling overwhelmed and frustrated. You've been getting great advice from the folks here and with your determination, you'll be all over this in no time.

I'm not a "newbie" but learned (or relearned) several things while reading your thread... so thank you... and welcome to CPAP world.

Hi ems! Thank you for taking the time to say hello and do not worry I am already over it. Finding this forum has been a huge boost today thanks to people like you.

[ems]

Right now I just came in from outside to warm up..20 degrees outside and damn truck won't start and looks like a bad battery connection that I need to try to fix and I don't normally do that stuff.

Be back in a bit and will look at your reports....gotta go freeze my butt for a little while trying to fix batter connection.

Is there anything you can't fix? If I owned that truck it would stay in the snow.

[olindacat]

Be back in a bit and will look at your reports....gotta go freeze my butt for a little while trying to fix batter connection.

You are amazing. All this time and effort and now you have to play mechanic too! Geez!!

[olindacat]

Can you get me the detail nightly report for a night where you woke up suffocating after 2 hours? Where you say the machine was off?

I am not sure I am getting a guaranteed day where the misery level was ultra high, as I have not kept a log but will try to do so moving forward. Here's a typical scrubbed mission though; a night only lasting a little over an hour…. I can't seem to get my Flickr image to work on here yet (saw you used both URL and IMG short codes, with an html page and an image file…. Anyway I've pasted this link. Can you see? How's this?

http://www.flickr.com/photos/mauigolfre ... 074518574/

[Pugsy]

Crap it is cold...brrrr...fingers near frozen. Gloves got in the way so had to do bare handed work.
It starts now. Bad connection at the terminal. Been hillbilly wired one too many times...hopefully one more will hold until I can get the entire wire replaced but that is EXPENSIVE (why I haven't done it before)

When you get a chance get a couple of those daily detailed reports. The summary graphs don't tell us much
Your pressures appear to be in the teens so if you wake up after a couple of hours with the machine not being on we need to figure out why it turned itself off.
Big leaks is the first suspect if Auto Off is turned on.
Need to see the detailed graphs to make sure that the machine was indeed off though and not just you thinking it was off which is quite common in the middle of then night for other reasons.

[olindacat]

Crap it is cold...brrrr...fingers near frozen. Gloves got in the way so had to do bare handed work.
It starts now. Bad connection at the terminal. Been hillbilly wired one too many times...hopefully one more will hold until I can get the entire wire replaced but that is EXPENSIVE (why I haven't done it before)

It is freezing out, and have you had snow too? Have some hot cocoa and get by the fire. You've been online way too long

[Pugsy]

An hour doesn't tell us much of anything. Nothing of huge excitement showing on that hour.
If you can't remember a specific night where you woke up and machine was off (or you thought it was off) then we will just have to go from here on out and try to catch one.

First order of business is make sure that the machine is either staying on as it should or is it really turning itself off.
Secondly....try changing the humidity setting as previously mentioned back to new System One humidification mode at 3 or 4 and let's see if we can reduce the rain out and temp issues...maybe they are feeding whatever it is/was that caused you to wake up feeling like you were suffocating.

No snow this time...just the polar collapse thing where the deep freeze is way down much further south than normal.
Yesterday it was near 50...today it doesn't even look like it will hit 25.
I will survive...at least it is above zero and sun is shining.

[Janknitz]

Olindacap, once you get the humidifier off classic mode, then pay attention to how you handle the big button. It is not only the on and off switch, but it also acts as a dial for the humidifier. That's how you could have set your humidifier for C-3 but found it on 5--you probably turned the dial when you were turning the machine on.

As for Kaiser, there's no point in having an administrator for your doctor if he doesn't have time to talk to you. You might want to consider switching doctors. And they MUST have your sleep study (even if it was a home-based study) data in your file. You can request it in writing--by law they have to give you copies of your medical record on request. Here in my region (Northern California) I can go into the Medical Secretary's office, fill out a form, and they will get copies to either mail or for you to pick up.

[olindacat]

An hour doesn't tell us much of anything. Nothing of huge excitement showing on that hour.
If you can't remember a specific night where you woke up and machine was off (or you thought it was off) then we will just have to go from here on out and try to catch one.

Pugsy, I can tell you that last night the humidity was far less thank you, but at some point I again woke up suffocating. I can screen trap every night I have every used this if you want to see trending. I am going to have to bone up on what all the stats mean and hope to have that figured out fairly soon.

First order of business is make sure that the machine is either staying on as it should or is it really turning itself off.
Secondly....try changing the humidity setting as previously mentioned back to new System One humidification mode at 3 or 4 and let's see if we can reduce the rain out and temp issues...maybe they are feeding whatever it is/was that caused you to wake up feeling like you were suffocating.

I changed the System One Humid mode to "On". I switched the Auto On to "On" and the Auto Off to "Off". The only other variable I can see that might mean something is Mask Alert and A-Flex. Mask Alert is "Off" and A-Flex is "3". My wife says each night she hears the steady stream of air and it is nice and quiet. Then, she says, the air seems to stop and I wake up and toss the mask. I really feel I am breathing my own carbon dioxide.

No snow this time...just the polar collapse thing where the deep freeze is way down much further south than normal.
Yesterday it was near 50...today it doesn't even look like it will hit 25.
I will survive...at least it is above zero and sun is shining.

We had a bit of snow and I was out in it quite a change of pace compared to Maui I assure you. Stay warm Pugsy and thanks again for everything. Do you want me to screen grab like 10 days worth of activity?

[olindacat]

Olindacap, once you get the humidifier off classic mode, then pay attention to how you handle the big button. It is not only the on and off switch, but it also acts as a dial for the humidifier. That's how you could have set your humidifier for C-3 but found it on 5--you probably turned the dial when you were turning the machine on.

Oh, I get you thanks Jankitz. That knob is how I try to contra things but it is hard to see where I am at as the machine is perched on a marble ledge well above my head (just the way the room is where I am staying) and can't be placed elsewhere, bed can't move, etc. I will set it each night before I go to sleep instead of turning it left to lower in the middle of sleeping, which has been my practice at times.

As for Kaiser, there's no point in having an administrator for your doctor if he doesn't have time to talk to you. You might want to consider switching doctors. And they MUST have your sleep study (even if it was a home-based study) data in your file. You can request it in writing--by law they have to give you copies of your medical record on request. Here in my region (Northern California) I can go into the Medical Secretary's office, fill out a form, and they will get copies to either mail or for you to pick up.

I don't mean to imply that they refused me, just that when I pester the doctors they can get snippy. Mine once fired me (he's been my primary care provider since late '90s) when I questioned him. I was happy to leave as I felt he wasn't giving my file the time it needed UNTIL I experienced his replacement, who was almost hating me for leaving my guy (like one cop protecting another or some weird thing). You have to remember Maui is a small island and people are weird there about things. Good help is hard to find and you can't act like a real customer because they will just tell you to go blow and you will make enemies of who is there. Yesterday, I wrote my guy and I am sure he will get me the report. My point had been that I would have thought there would have been a sleep study expert, a specialist I suppose, who would have been available after the study to discuss the results, my options, etc. My overall feeling about Kaiser is that they seem to be giving less and charging more and the trend is getting worse and worse. It is all going to come to a head one of these days. Unsustainable situation I suppose…. Thanks for chiming in with your ideas, as they at least validate what I feel should be done as well.

[Pugsy]

Do you want me to screen grab like 10 days worth of activity?

Not really. Right now I am trying to determine what causes the middle of the night wake ups and no air is flowing?
With Auto Off...set to off....we have eliminated the chance that big leaks are causing the machine turn off.

So get me a detailed report from last night. Let's see if your machine really turned itself off or you just felt like it did.

Mask alert is just a leak alarm. Tiny beeps that are hard to hear if leak goes into large leak territory.

AFlex is just the exhale relief.

[olindacat]

So get me a detailed report from last night.

I am afraid I did not have the sense to remove my card and install it into the machine last night, Pugsy, but will be on it again this evening and thanks for helping as usual. I read your nice Pointers and will read up on padacheek.com as well. I'm also looking at pillows as per your advice there. Excellent writing by the way.

AFlex is just the exhale relief.

What does this mean, "exhale relief" Pugsy? I have no problem exhaling what I want is the exhale to get out of my mask and fresh air in. This seems to be occurring in my middle-of-the-night air hunger or suffocation moments. Now, I can also add that the machine is not off. I have seen the little light so I know it is on, but the pressure is far too low to evacuate the mask of my exhalation. I read where you say: "In other words, if you're having "air hunger" problems and you're NOT using the ramp, then plain old anxiety and worry may be the real cause of your problem. "

I am not having problems while awake. I actually like the "hurricane blast". It is that I awaken from my sleep bc I can't breathe. Perhaps I am forming sub-conscious anxieties?

[Pugsy]

Actually the machine stores a good bit of information in it...go ahead and put the SD card back in your machine and then let it write to the card...then you can remove it and import to SleeyHead. You only lose the flow rate graph.

AFlex...what I am trying to say is I doubt AFlex is your problem since you go to sleep with it just fine and have problems later.
Read up on AFlex
http://aflex.respironics.com/
It's more of a timing for the reduction than it is the actual reduction that offers the "relief". It's a personal choice whether to use any exhale relief and/or at whatever setting.

The fact that you go to sleep just fine and wake up in the middle of the night with a problem is troublesome to me. Your minimum pressure settings are far above typical lower settings where lower minimums cause suffocation feelings.
The fact that wife reports the absence of typical air flow noise is troublesome.
Having a machine simply stop in the middle of the night is not normal but we still need to see verification of it stopping on the software reports...and not you stopping it.
I don't know if you are experiencing some sort of anxiety in the middle of the night or not....it wouldn't be impossible and if wife wasn't reporting what she is reporting...I might be more inclined to lean towards anxiety but at this point I am just what iffing.