Frustrations of a new CPAP User

[jarhtmd]

I'm new here. Just registered. Probably all the info that I want/need has already been posted. Searching thru it all seems (to me, right now) similar to how I felt when I 1st received my CPAP in May 2015. Doctor; supplier; manufacturer . . . all seemed to feel that I already knew, everything was obvious, I would learn everything by osmosis or whatever.

I sent the following to my supplier (home care provider) prior to my making a return call concerning a "summary report" that I received (after frustrating conversations with them). My call was unsuccessful . . . their voice mail hung up on me, sent me off into never-never land, etc. Seems the only time they want to talk to me is to get my OK to send more supplies . . . that is, to sell me something . . . "Oh, Medicare will pay for it" . . . Yeah, let the government pay . . . that's why our taxes are so high.

* * *
I have been confused & frustrated about most aspects of my CPAP therapy since beginning on May 5, 2015. The whole situation was been a constant battle for me. However, suddenly & miraculously in mid-Nov (after 3 weeks traveling w/o CPAP), everything seemed to improve dramatically. Now I'm having fewer problems sleeping, using the mask, etc.

I get little or no feedback from anybody. Despite my requests & assurances by Tibro, monthly reports haven't been sent. Frankly, Tibro's reports seem to be very "general" in nature. I don't know enough to know what I don't know &/or what I want/need to know. My doctor appointments are months apart. So I decided that I should become more pro-active in monitoring.

There was confusion about Philips' data when I called Tibro several days ago, so I've attached Philips' daily info (from http://www.MySleepMapper.com) that I've gathered to date. Literature (from Tibro ??) indicated that high mask fit is good "but will rarely = 100%". My mask fit recently is often 100% (always since 12/22/15). The apnea/hypopnea numbers (which I don't really understand) seem to be all over the ballpark. How can I recognize red flags?
* * *

I may be doing wonderfully. I know that I'm sleeping more soundly; usually thru the night (for the past 6-8 weeks). At last visit (Aug/Sep ??), doctor recommended another appointment in 6-9 months. I don't expect daily monitoring by doctor, but someone should monitor on a frequent/regular schedule. I've scheduled another appt in a couple of weeks.

Well, at least I feel better with that off my chest.

[ChicagoGranny]

so I've attached Philips' daily info (from http://www.MySleepMapper.com )

SleepMapper is considered a joke or worse by the regulars here. (But you had no way to know that.)

someone should monitor on a frequent/regular schedule.

That's you! Download SH software (viewtopic.php?f=1&t=88983&start=0) and get started - lots of people here to help you.

I've scheduled another appt in a couple of weeks.

I'd keep my expectations very low.

I only see my sleep doc once per year, and that is only because Medicare requires an annual doc visit to keep paying for my supplies.

[Drowsy Dancer]

Once you know what to look for (and people here will help), you will find self-monitoring to be very useful.

[OkyDoky]

It would help us if you registered your equipment so it would show in each post. This might help. wiki/index.php/Registering_Equipment_in_User_Profile
If you have difficulty identifying your machine this link might help. https://sleep.tnet.com/cmd
Also, this link will help with the Sleepyhead download. https://sleep.tnet.com/resources/sleepyhead

[PoolQ]

Perhaps some real life suggestions (should not be this way, but usually is)
1. The DME should not be depended on for anything. I call them when I want something, tell what I want, argue if they say no. I then pick up what I wanted.
2. The Doctor wants to help, but is totally constrained for time. They will tell you what you have and your basic settings (sometimes) and send you out into the world. If you see them again, you need to tell them what you want and not ask them to fix it cause its not working.

Depending on what machine you have you could have data all the way back to when it was not working and then you can actually (maybe) figure out what is different.

Update your profile so we know what you have.
install sleephead and look at your data. Most likely there will be a lot you don't understand. Post some screen shots and we'll talk about it.

Lots of people will help get you up to speed. You are going to have to lead the effort though

[jarhtmd]

Thanks for your replies. I have read some of the topics for newbies & am getting a better grip on things. I started this thread strictly out of frustration. Nobody seemed to know &/or care how I was surviving CPAP. I was concerned about the numbers used to compute AHI, what was good/ok/bad, but nobody seemed willing to tell me. Tibro didn't seem to know themselves. I got those ranges quickly in the Basic section. I'm still wondering about fluxuations in Central Apneas, Obstructive Apneas & Hypopneas. It seems logical to me that there are also meaningful ranges for them.

I pretty much agree with ChicagoGranny that SleepMapper is a joke, but I've been getting my numbers there every few days for the last couple of months & entering them into a spreadsheet, which makes it more useful, especially with the ability to display averages, etc that I've computed. The biggest hassle is recording each number for each day, one at a time.

I haven't downloaded/installed SleepyHead yet. I'm hesitant to D/L software until I sure it will do what I need. Frankly, my brief review doesn't indicate that SH will provide very different or more useful data than my spreadsheet contains. Some of the graphs look like they might be useful to show variations, trends, etc. It looks like there's quite a variety of software, depending on the equipment, for writing to the SD card. I assume, SH recognizes which format is on the card. It also seems that removing the card, loading data into SH & replacing the card would be a hassle because of the CPAP's location, but fortunately it could be done relatively infrequently. Now I'm keeping pretty close tabs, so it would almost be a daily task.

[jarhtmd]

Update your profile so we know what you have.
install sleephead and look at your data. Most likely there will be a lot you don't understand. Post some screen shots and we'll talk about it.

I updated my profile to show my equipment, but it didn't seem to work. Avatar, added at the same time, DID work. I did a screen capture showing my profile equipment changes, but can't figure out how to post that.

[OkyDoky]

Did you check out this to help with the equipment profile? wiki/index.php/Registering_Equipment_in_User_Profile
If it still doesn't work you can just type your equipment into the Signature area.

[ChicagoGranny]

Frankly, my brief review doesn't indicate that SH will provide very different or more useful data than my spreadsheet contains.

You don't have a clue.

[palerider]

Frankly, my brief review doesn't indicate that SH will provide very different or more useful data than my spreadsheet contains.

You don't have a clue.

that's an understatement.... 'course, he does seem to (think) he knows everything.... why listen to us?

[OkyDoky]

I haven't downloaded/installed SleepyHead yet. I'm hesitant to D/L software until I sure it will do what I need. Frankly, my brief review doesn't indicate that SH will provide very different or more useful data than my spreadsheet contains. Some of the graphs look like they might be useful to show variations, trends, etc. It looks like there's quite a variety of software, depending on the equipment, for writing to the SD card. I assume, SH recognizes which format is on the card. It also seems that removing the card, loading data into SH & replacing the card would be a hassle because of the CPAP's location, but fortunately it could be done relatively infrequently. Now I'm keeping pretty close tabs, so it would almost be a daily task.

The software doesn't write to the SD card it reads the information that your machine writes to the SD card. And there is much more information than you are getting now. You even move the lock on the SD card where the computer doesn't write on the card. Most computers have a card reader built in so you just pop the card in and Sleepyhead does the rest. It certainly would be quicker than manually putting the numbers in a spreadsheet. And you would have graphs that you can zoom in to see breath by breath if necessary.

[Mudrock63]

Download Sleepyhead. You are missing all the fun!

[Gasper62]

Nuthin like goin' wrong with confidence !

[jarhtmd]

Man oh man oh man! Have I ever made a wrong (1st) impression! ChicagoGranny is absolutely correct . . . I don't have a clue. I discovered this site while trying to learn. Overall CPAP has been a very frustrating experience for me, as I know it has been (& still is) for many, many others. I came here to learn; not to be berated & attacked because I'm so ignorant. I don't deny my ignorance. Not only do I have tons to learn about sleep apnea. I am far from the most skilled communicator. I sometimes (often) fail to clearly convey my thoughts. I certainly have NOT been trying to say that I know everything (or anything).

I do, however, have many other things happening in my life, besides sleep apnea & CPAP. Some involve heavy use of my computer. But I don't spend my time trolling social media. My time is limited. From experience & by nature, I'm wary of installing new software at 1st recommendation. Sleepyhead is obviously highly recommended here. I'm sure it'll provide common ground for sharing info back & forth. I have no doubt that I will install it, in due time, but it can't be done right now for valid reasons. Please try to bear with me in my ignorance, stubbornness (or whatever). I'll try to bear with (& ignore) what seems (to me) to be attacks on me as a person (by some).

Thanks to all who have offered constructive comments.

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I have been using my CPAP almost nightly since May 5, 2015.
• Does the SD card contain data all the way back to the beginning date?
• Does my doctor delete old data when I bring the card to an appointment?
• What happens if/when the card fills up?
• How frequently do people typically download data from the card into Sleepyhead?
• Where can I find instructions for posting screen shots?

[OkyDoky]

I have been using my CPAP almost nightly since May 5, 2015.
• Does the SD card contain data all the way back to the beginning date? Not sure someone else will answer.
• Does my doctor delete old data when I bring the card to an appointment? Some do some don't.
• What happens if/when the card fills up? The files take up very little space so it would be quite a while but I don't know. I assume the machine will overwrite.
• How frequently do people typically download data from the card into Sleepyhead? Initally daily now maybe weekly.
• Where can I find instructions for posting screen shots?

Here are some links to help.
https://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/resources/sleepy ... screenshot
https://sleep.tnet.com/reference/tips/imgur
Here are some tips I have for posting.
On the left side turn off the calendar by clicking on the triangle by the date.
Also the pie chart doesn't give us very much info so you can turn it off by going to File - Preferences -Appearance - Uncheck Show event break down pie chart
That allows us to see the details on the left.

The graphs that are usually helpful are:
!. Event Flags
2. Flow Rate
3.Pressure (not mask pressure)
4. Leak
5. Flow Limit (only with Resmed machine)
Put your graph in that order by grabbing, by the labels, with your mouse and dragging it where you want it.
Now grab the line between the graphs and resize them until you get them in one screenshot.

Take a screen shot after you organize your graphs. You can push F11 ( or click file - view - fullscreen toggle) on your keyboard before you take your screenshot and it makes it full screen with no ID info.

This is the link to help you with Sleepyhead. https://sleep.tnet.com/resources/sleepyhead
If you have problems or questions just ask and someone will help. All of the links above were developed by a member here and have pictures to help.