Is there success without having a Datacapable machine?

Many wise people on cpaptalk have data capable machines and are becoming savy in being able to determine how they are doing and make adjustments. . .something I am sure the CPAP techs are not happy about 'cause they'll be out of a job.

At what point in the process have those with the data machines have either obtained one or started to figure things out with the one they have?

Are there those people who have had seccess and have not or still do not use any of this information whether their machines have the capability or not?

I am not sure what resistance I will get when I ask the Pulmonologist that I would like to upgrade to one. . .

shardebhow wrote:Many wise people on cpaptalk have data capable machines and are becoming savy in being able to determine how they are doing and make adjustments. . .something I am sure the CPAP techs are not happy about 'cause they'll be out of a job.

At what point in the process have those with the data machines have either obtained one or started to figure things out with the one they have?

Are there those people who have had seccess and have not or still do not use any of this information whether their machines have the capability or not?

I am not sure what resistance I will get when I ask the Pulmonologist that I would like to upgrade to one. . .

At the moment my GP doctor mentioned "Sleep Apnea" as a probable cause of my daytime sleepiness, I started searching the Internet for everything I could find pertaining to it......including the equipment used to treat it. Following my sleep study (the tech person clued me in that I had it) I proceeded to get my "ducks in a row" as far as insurance reimbursements, back to checking out the equipment and masks I might want to use, inquiring with local DMEs, etc. After the meeting with the doctor to get my prescription, my doctor sent me to another local DME to get my stuff. I did visit with them and got some pricing from them, but didn't commit. I went home and called CPAP.COM and ordered my equipment and software from them. I started monitoring my therapy from the very first day, so I can't relate to NOT being able to.

I wouldn't worry about the medical professionals......there are LOTS more potential patients for them to take care of.

Den

I have been successfully treated for OSA for over 13 years with non-data capable CPAPs. I used my first CPAP for about 12 years, and all it had was a mechanical hour meter, my current CPAP now has a digital hour meter. I got an autoPAP several months ago and I use it a few days every month or two to verify that my titration is correct - and it is.

I don't think they will out of job. They are still require to monitor sleep study and attend to CPAP beginners. It is us who will be sleeping with machine every night, who else knows better ? They can't attend to all CPAP user (beginners or experts) at the same time or every night. CPAP users are left on their own after awhile.

I can't imagine using a APAP without data recording unless I can't afford one. It is a huge difference looking at the data compare going blindly. The first few weeks without software using my APAP, I have no idea what happen. AHI and large leaks were really high.

You should get data capable APAP. If you are worry about the doctor, buy it online on your own. At least it is cheap in the US.

Post subject: Is there success without having a Datacapable machine?

I'm sure there can be, especially if success is measured by finding a single pressure that lets a person breathe ok while he/she sleeps.

The people in this study were using plain cpaps and no software. Feedback for them was how they themselves felt and probably what a bed partner might tell them: "You were still snoring." or "You didn't snore at all last night."

Can Patients with Obstructive Sleep Apnea Titrate Their
Own Continuous Positive Airway Pressure?
http://ajrccm.atsjournals.org/cgi/conte ... /167/5/716

Menu on the upper right of that page has it in PDF.

No matter whether a person has a machine that can give a lot of data, all these machines can do is treat sleep disordered breathing (SDB.) They can't treat other diseases that may be in and of themselves leaving a person feeling tired, exhausted, sleepy.

Sometimes treating SDB or "sleep apnea" does, indeed, help take care of other ailments. But not always.

There can be another common sleep disorder (not a sleep breathing disorder) that can be interfering with getting restful sleep. PLMD (periodic limb movement disorder) which, if a person has it, would have shown up during the sleep study in a sleep lab.

There can also be side effects from medications that can make a person continue to be "sleepy" or tired, even if the CPAP machine is doing its part of the job (keeping the airway open during sleep) fine.

The machine can be doing its part of the job perfectly, but the person might not be practicing good "sleep hygiene" habits. Not allowing enough hours for sufficient sleep and/or not having a bedroom environment that's really conducive to sleep.

The machine can be doing what it's supposed to do, pressure-wise, but the mask might be so uncomfortable and bothersome that the person can't sleep well.

Undiagnosed, untreated or undertreated GERD (acid reflux) can interfere with sleep.

Pain can, too.

In other words, there are a lot of pieces to the puzzle.

It can help to have a machine that gives leak data in particular. Treatment air leaking out the mouth or frank mouth breathing while not using a FF (full face) mask can interfere a lot with getting effective treatment.

It can help to see overnight AHI data, especially by using software that lets a person see a detailed graph of "events" -- the apneas and hypopneas that sneaked through. See whether they were scattered and random, or if they hit in blocks that correlated to times where there was a high leak rate going on...that kind of thing. Can give clues about what to go to work on to make treatment better.

If everything looks fine on the software reports, but a person still doesn't feel well rested, that can at least reassure you that cpap is doing its job. A good "cpap" report (low leak rate, AHI below 5) can indicate you need to look into other possibilities for continued sleepiness or not feeling good.

Might be just a matter of getting better control of air leaks from mouth or mask. Or perhaps something like replacing an ancient mattress. We have to be our own detective.

While we're working out the puzzle pieces, the more info we have from the CPAP machine about how our OSA is being treated, the better, imho.

I forgot to mention (for the umpteenth time) that had I NOT had the software and a data-capable machine, I whould have been trying to deal with a pressure of 18 cm., for who knows how long.

The sleep doctor got my titration/pressure wrong and I promptly changed to a pressure of 10 cm to start with.....and left it there for a year. I've only had to tweak it upwards a couple more cm. to decrease my snoring, even though my AHI was just as good with 10 cm. as it is with 12.

Den

Not providing the patient with the means of following their treatment, combined with the health system providers, not knowing or caring about patient needs, is why XPAP treatment has a 50% failure rate.

People that fight for the equiptment needed to monitor their treatment have a better success rate, because they are movitated to repair as much of the damage that has been done to their health as they can.

The system for the most part is motivated be making the most profit and doing the least for it. Jim

My daughter in law's father has OSA and has been on a cpap for at least 6 or 7 years. I was talking with her the other day and she was saying her dad's cpap doesn't even have any type of humidification on it -- let alone data. He has been successful with his treatment and uses his cpap regularly.

A friend of mine at work has OSA as well. He doesn't know the name of his machine, the name of his mask or really any details except his pressure is 15. He has a cpap with a passover humidifier. He doesn't care about the data or wants it. He uses his cpap nightly and has for about a year and a half. He says he feels well rested and doesn't want to be without it.

Another coworker's husband is on a bipap. He was diagnosed about the same time I was (in August). All he can do is cuss, fume, and fret over how horrible being "tied to a machine is". Last time I asked he was lucky if he spent a couple of hours a night on the machine -- after all NOBODY has it as bad as he does and can understand how MISERABLE he is. I have given him the address of this website and he chooses to continue the way he is. Is his treatment successful? I don't feel it is -- alot of it has to do WITH HIS attitude about it. Data is not going to help him much at this point as he sees himself as a victim.

I think so much depends on OUR OWN attitudes about treatment. If we have the data and keep an eye on things so much for the better. If our attitude is still positive we can still make it work without the data.

shardebhow wrote:Are there those people who have had seccess and have not or still do not use any of this information whether their machines have the capability or not?

I used non-data capable flow generators for 3.5 years of very successful CPAP treatment. I eventually got a data capable APAP machine because I was able to get one at a very attractive price and wanted to see whether it would make any significant difference to my treatement.

At the end of the day, after trying APAP and various other advanced features on the new machine, I am basically using it in pretty much the same way as my former simple CPAP machines. While I capture and monitor my data daily via a PC, I can see from that data that the treatment I was getting from my "simple" CPAP machine was in fact very close to optimal for me.

The data has allowed a little fine tuning of some of the things I do, but in terms of my overall treatment, none of the changes are of any great significance.

YMMV

Disclaimer: Keep in mind I am not in North America and so do not need to deal with the North American healthcare delivery system.


Cheers,

Bill

While it is possible to get good treatment without the data, it's difficult to determine if you are getting good treatment or not. I've been helping an 82-year old relative with her therapy and they tried to give her a non-data machine, despite a prescription from her doctor for a data capable machine. She got the hybrid mask at the same time and used it faithfully every night thereafter. However, the tech did not fit her mask properly. She was given the small pillows for the mask and needs at least a medium. How did we discover this? I read her data card and saw all those leaks. Her AHI was better than her first sleep study, but still between 5 and 10 AHI. I gave her a set of the properly sized pillows that I had available and her last card reading showed that her leak rate was good and the AHI hovering around 5.

For her, even with the leaks she felt better and was grateful for the treatment. How might she know if it was the best treatment? I don't think there's a way, since it it likely that she had this condition since young adulthood. Better to her was still not adequate treatment. By definition, with an AHI consistently above 5, she still had sleep apnea.

Great post, Rose. Your relative is very lucky to have you helping her.

What you brought out reminds me of something I've thought for a long time.

I think DMEs should:

1. give every newly diagnosed person a machine that can record full data - whether the prescription is for a cpap, autopap, or bipap. Whatever type of machine it is, it should be able to provide more than just "hours of use."

2. the data should be downloaded before the first week of use is over.

3. special attention should be paid to the DETAILED data for each night during that first week -- not just a glance at "compliance."

4. there should be EXTRA special scrutiny of the leak graph for each night of that first week.

I firmly believe that mouth breathing (if not wearing a full face mask) or mask/mouth leaks in general wreak havoc on treatment. I also believe that happens to many "cpap'ers" out there. To way too many. Catching and addressing that problem early is so important.

I think probably most DMEs (if they've even thought about it) assume that the titration night in the sleep lab would have addressed any leak problems.

The lab might have used a different mask or different size from what the person will receive from the DME. Might be that the person tosses and turns more at home than they did while wired up at the sleep study and often urged to stay on their back.

Even if it's the same mask....in the few hours a person has a mask on during titration, the mask may have been cinched down much tighter than the way it will be worn night after night at home. A chin strap, if used, might have been tighter too. Comfort issues that a person was willing to tolerate for four or five hours during a titration might not be duplicatable, tolerable, or even advisable, for night-after-night use at home.

Leaks, even massive ones, don't necessarily wake people up. I can imagine many, many people out there who are dutifully putting on their mask each night, trying to "do this treatment" like they are supposed to, but having such huge mask or mouth leaks, they aren't getting anywhere near the benefit they should be getting.

Followup and support -- and LOOKING for LEAKS -- during that first week could make a big difference for the good. If DMEs would just do that.

Of course, it all goes back to giving people a machine that can report more treatment info than just a bare bones, "compliance recording" machine does.

That's time consuming stuff. Time is money. And machines other than bare bones basic are more money.

Probably never will happen.

a short story about this----in june 07--i was given the low end m series---at this time my ahi was 107.9----my pressure was set at 11 and i was sent home,, 30 days later i found this website,,i went back to the dme and was told 2 bad to a up graded machine---so i purchased a m series auto aflex--then had to purchase software in aus. and a reader in china to check myself--i was feeling great at the time with the low end machine---so i set the machine 11-13.5 and went to sleep---i checked every day and found out that my ahi was around 6-7----i fiddled with the pressure and the leaks and got the ahi down to less than 1 consistently---was feeling fantastic, but did'nt relize how fantastic---about 2 months in to the new machine i tried a fullface mask--the first night my ahi went up to 6.8--and i did'nt feel right the next day--i tried it again for 1 more night and strapped er down tight--next day my ahi was 2.9---i was not tired either day,,but i for sure did'nt feel sharp or on my game...my conclusion from this was the following---i felt great with the low end machine comming down from107.9---to 6 or 7---but when i was under 1 --i was even better--and when it went up-to 2.9 to 6.8--i got a little foggee---so i would never have known the difference with out the data capable machine---i would have lived a little foggee forever and never known it----hope this helps-----merry pat

rested gal wrote:Great post, Rose. Your relative is very lucky to have you helping her.

What you brought out reminds me of something I've thought for a long time.

I think DMEs should:

1. give every newly diagnosed person a machine that can record full data - whether the prescription is for a cpap, autopap, or bipap. Whatever type of machine it is, it should be able to provide more than just "hours of use."

2. the data should be downloaded before the first week of use is over.

3. special attention should be paid to the DETAILED data for each night during that first week -- not just a glance at "compliance."

4. there should be EXTRA special scrutiny of the leak graph for each night of that first week.

I firmly believe that mouth breathing (if not wearing a full face mask) or mask/mouth leaks in general wreak havoc on treatment. I also believe that happens to many "cpap'ers" out there. To way too many. Catching and addressing that problem early is so important.

I think probably most DMEs (if they've even thought about it) assume that the titration night in the sleep lab would have addressed any leak problems.

The lab might have used a different mask or different size from what the person will receive from the DME. Might be that the person tosses and turns more at home than they did while wired up at the sleep study and often urged to stay on their back.

Even if it's the same mask....in the few hours a person has a mask on during titration, the mask may have been cinched down much tighter than the way it will be worn night after night at home. A chin strap, if used, might have been tighter too. Comfort issues that a person was willing to tolerate for four or five hours during a titration might not be duplicatable, tolerable, or even advisable, for night-after-night use at home.

Leaks, even massive ones, don't necessarily wake people up. I can imagine many, many people out there who are dutifully putting on their mask each night, trying to "do this treatment" like they are supposed to, but having such huge mask or mouth leaks, they aren't getting anywhere near the benefit they should be getting.

Followup and support -- and LOOKING for LEAKS -- during that first week could make a big difference for the good. If DMEs would just do that.

Of course, it all goes back to giving people a machine that can report more treatment info than just a bare bones, "compliance recording" machine does.

That's time consuming stuff. Time is money. And machines other than bare bones basic are more money.

Probably never will happen.

Wonderful points, RG! I would love to see this. Or even a support group of new and experienced patients helping them. (Kind of like this forum, but for the many people out there who aren't comfortable with the internet. I was surprised that the AWAKE meeting I attended did not have anything like this. There was a sleep doc who gave a talk and a Q and A after it.

Sharde - -

You raise some good questions; and, there are many good replies above by those quite experienced at using data as info feedback to refine their therapy.

At what point in the process have those with the data machines have either obtained one or started to figure things out with the one they have?

I had my dataless Respironics CFLEX CPAP for 2 years. My therapy was successful by most measures; however, I "sensed" that there might be some room for improvement. And it bugged me that I had no nightly data to follow the therapeutic effectiveness of such importance to good health.

I saw my pulmonologist for my annual visit and asked his opinion, and he completely agreed. I understood that my insurance would not pay for a second PAP machine in 2 short years, but the doc thought it was a fine idea to upgrade to APAP, and to data capability. (Coincidentally, he recommended the AFLEX unit that I wanted, and wrote an Rx for me.)

I have refined my values, and where I was once at straight 8 cm, I'm now at 7.5-9.5, and I typically get AHIs of 0.5 or less. (I did one night's worth of baseline determination, and straight CPAP at 8 was 0.8 AHI)

For me, the cost of $900 (I got the AFLEX, data reader, and software at CPAP.com) was worth it. For some, the expense might not be justified due to other financial priorities, and that's fine too.

Good luck in your decision.

Regards all - - Tom

[quote="Captain_Midnight"]Sharde - -

You raise some good questions; and, there are many good replies above by those quite experienced at using data as info feedback to refine their therapy.

At what point in the process have those with the data machines have either obtained one or started to figure things out with the one they have?

I had my dataless Respironics CFLEX CPAP for 2 years. My therapy was successful by most measures; however, I "sensed" that there might be some room for improvement. And it bugged me that I had no nightly data to follow the therapeutic effectiveness of such importance to good health.

I saw my pulmonologist for my annual visit and asked his opinion, and he completely agreed. I understood that my insurance would not pay for a second PAP machine in 2 short years, but the doc thought it was a fine idea to upgrade to APAP, and to data capability. (Coincidentally, he recommended the AFLEX unit that I wanted, and wrote an Rx for me.)

I have refined my values, and where I was once at straight 8 cm, I'm now at 7.5-9.5, and I typically get AHIs of 0.5 or less. (I did one night's worth of baseline determination, and straight CPAP at 8 was 0.8 AHI)

For me, the cost of $900 (I got the AFLEX, data reader, and software at CPAP.com) was worth it. For some, the expense might not be justified due to other financial priorities, and that's fine too.

Good luck in your decision.

Regards all - - Tom