Why I always insist on a data-capable machine and software

roster wrote:

jnk wrote:

GTOJim wrote:a sleep study is a one night snap shot, the results are not always optimum.

Well said, IMO.

Now jnk agrees with me after he "stunk up" the thread.

It helps me when someone other than you says it, 'cause then it ain't all tainted and dripping with roosterizations.

Patients vary night to night. Lab titrations are still valuable. But get a full-data machine and monitor your therapy.

I hope you get plenty of posts of examples of home-machine data helping patients optimize their therapy, Ro(o)ster!

I use an S8, so I use the lcd screen to monitor my therapy. I have the software, but haven't used it in over a year, since the data from the screen is so good from my machine. I am still glad I have the software, though, in case I need it to see more detail if a problem ever develops.

It was a little easier for me, since the nice pros at the excellent lab nailed my titration exactly on that one night, as I believe they so often* do!!!

[* though not always]

DocWeezy wrote: Just my experience in this matter....and I lucked out because the DME ONLY provided data-capable top of the line machines. I wouldn't have known enough at that time to ask about data capability because I hadn't found this place yet--it all happened so fast I hadn't done much research at all.

Weezy

Doc, That is a nice story about your excellent doctor who understands the limitations of the medicine he is practicing.

Your point about not knowing (How could we know?) about data-capable machines is the reason I started the thread. I want to see this forum reach everyone that comes here for the first time with this message - "You most likely can do it better if you have your own data."

Many come here after being diagnosed and before being titrated. This is an excellent opportunity to "get them" before they are stuck with a machine which only records hours of usage.

Others come here after receiving a basic machine, but maybe before they are committed financially to it and they may have an opportunity to switch to a good machine.

Watch for those new members who have one or a few posts and make sure they get this message.

Thank you,

I just want to add that there is more than one way to "pluck a chicken..."

I agree that data is helpful, but if you have a basic machine you can always pick up a recording pulse oximeter. Airflow data is interesting, but the main objective is to eliminate the obstructions that cause desaturations below 90%.

In some cases, when you find a pressure that eliminates the desaturations, everything else falls into place.

HoseCrusher wrote: but the main objective is to eliminate the obstructions that cause desaturations below 90%.

Well you can argue that is one of the objectives, but it is not the main objective.

Minimizing arousals due to obstruction of the airway is the main objective of CPAP treatment. Many individuals have very unhealthy cases of sleep-disordered breathing with no desaturations below 90%. Put a recording pulse-oximeter on these people and it will say everything is fine.

For my own therapy I would not in the least be satisfied to eliminate desaturations below 90% and leave dozens of obstructive airway arousals untreated.

I have my own recording pulse-oximeter but it has been proven to be redundant and inferior to my CPAP software. On the worst of nights I get no desaturations below 90%, but looking at the CPAP software I see an unacceptable level of apneas and hypopneas reported, many of which led to arousals.

I like this:

We don't believe that it's ethical for body measuring companies to block users access to their information.
We do believe that you own your data, can take your data with you, and get to decide what to do with it.
http://blog.myzeo.com/forum/zeo-decoder ... -in-alpha/

Thanks to absolutscharf for bringing my attention to this and to Zeo company for taking this attitude.

We can learn much from new members.

jnk wrote:

roster wrote:Even titrations at the best sleep labs often prescribe settings that result in poor therapy.

I assume that statement is based on anecdotal evidence? Which best labs often prescribe bad settings, specifically? How often? What is the documented percentage?

I agree with the value of home-machine data (particularly leak data when starting out) and software--espcecially for patients who continue to be sleepy and tired--and I am always pro-education.

But I would still have a hard time signing off on the statement that the best labs often blow the settings, myself, without multiple reputable sources backing it up.

More ro(o)sterized hyperbole?

The word "often" in roster-rooster's opinion struck me, too, as ro(o)sterized hyperbole.

"Sometimes" would have been a better word to use, imho.

Anyway... that (being) said... I do agree wholeheartedly with the following statements:

roster wrote:I want to see this forum reach everyone that comes here for the first time with this message - "You most likely can do it better if you have your own data."

Many come here after being diagnosed and before being titrated. This is an excellent opportunity to "get them" before they are stuck with a machine which only records hours of usage.

Others come here after receiving a basic machine, but maybe before they are committed financially to it and they may have an opportunity to switch to a good machine.

jnk wrote:Patients vary night to night. Lab titrations are still valuable. But get a full-data machine and monitor your therapy.

I also very much agree with Jeff's comment and his reason for questioning rooster/roster's use of the word "often" -- an important point, not a minor quibble, imho:

jnk wrote:it could also do damage to dissuade just one naive patient from listening to professionals he has hired to help him with his health, in my opinion. And it could do damage for one patient with central tendencies or PLMs to turn down a titration because he thought they were worthless.

I think that ideally every patient should get a full-data machine and use the software to monitor his own therapy, but that is regardless of how valuable the titration night is/was.

Ditto to this:

jnk wrote:

GTOJim wrote:a sleep study is a one night snap shot, the results are not always optimum.

Well said, IMO.

Right. Well said, Jim.

"not always optimum" is a good way to put it and is not at all like shooting off fireworks from the hip with the word "often" in:

roster wrote:Even titrations at the best sleep labs often prescribe settings that result in poor therapy.

My argument is that sleep is much better if you don't desaturate below 90%.

Once you get those major obstructions removed, then you can pour over the airflow data to try to improve things from there.

I will revise my comment to say that the main objective is to have a "symptom free" restful sleep, and add that adequate oxygen levels go a long way toward meeting that goal.

Eliminating arousal's are important as are the variety of other causes of sleep disorders. However I put more faith on EEG scored arousal's (confirmed with a change in pulse) than airflow scored arousal's, but any difference between those is beginning to blur a little with the newest algorithms on the new machines.

While you may have not suffered from desaturations below 90% on your initial sleep study, many people do. However, simply removing the obstructions that cause desaturation do not insure "symptom free" restful sleep. Although it is a huge first step forward.

While this discussion has mostly focused upon SpO2 levels, don't sell the pulse aspect of the pulse oximeter short. There is a wealth of information available in the pulse data too.

HoseCrusher wrote:While you may have not suffered from desaturations below 90% on your initial sleep study,

I did have large desats on my initial sleep study. What I said was,

I have my own recording pulse-oximeter but it has been proven to be redundant and inferior to my CPAP software. On the worst of nights I get no desaturations below 90%, but looking at the CPAP software I see an unacceptable level of apneas and hypopneas reported, many of which led to arousals.

On a bad night using CPAP I get no desats below 90%.

HoseCrusher wrote:Once you get those major obstructions removed, then you can pour over the airflow data to try to improve things from there.

Now I think we are in agreement.

roster wrote:Even titrations at the best sleep labs often prescribe settings that result in poor therapy.

I stick by that statement and there is evidence of it every time I visit the forum; evidence of it when I talk to fellow CPAPers; evidence of it already posted eloquently by other members in this thread; evidence of it from doctors who encourage the use of the software.

And BTW,

it could also do damage to dissuade just one naive patient from listening to professionals he has hired to help him with his health

I see this being done regularly in the forum by many including the one casting stones here. "Your DME is not correct", "your RT is telling you wrong", "your sleep doc is sadly misinformed", etc.

Dissuading patients from listening to their hired medical professionals!

Somebody here is being holier than the Pope.

The sleep lab both my husband and I went to was also our DME;
which may account for his titration at 12cm, straight CPAP.
The Rx was for an Escape; He demanded an Autoset; and they made us pay over $400 'adjustment'.
As I turns out, his 95% pressure has NEVER exceeded 10!
On the other hand, I was one of the lucky ones--My new Autoset confirms that my 14cm was practically spot-on;
but since I'm losing weight (intentionally), I am using it to automatically adjust my pressure as it changes.
My sleep doc was tickled to write me a prescription for a recording pulse oximeter; and was pleased to receive sample print-outs from the software.
(I didn't need the RX after all, but it was a good way to get his attitude.)

Well I am having good, then bad, then great, then terrible days all in a row! Last night was a nightmare while playing with my new pad-a-cheek toys and my Quattro. It was completely MY fault, trying 3 things at once. But what a mess. Here was last night, one of my worst. Worried about the periodic breathing portions too. Now the mask leaks are caused by my trying to get a finger under the mask to scratch my itches etc. Well, right up till I accidentally undid the new pad a cheek anti leak strap and my mask literally BLEW off my face. BOTH cats broke the sound barrier in their hasty exit. 3:30 AM and no more sleep for me after all the drama. In a few hours I will be 62 years old (if I survive!)..... I hope tonight goes better so I can at least wake up feeling younger instead of like today. Rooster, I looked EVERYWHERE on the Phillips site and can't find the info you told me was there no matter how hard I look. The part describing to me what some of this info on my software is showing me? I admit, I am still ignorant but learning as best I can.

Sorry, just saw my PDF will not post on this site. No idea how to post my data.

roster wrote:

roster wrote:Even titrations at the best sleep labs often prescribe settings that result in poor therapy.

I stick by that statement and there is evidence of it every time I visit the forum; evidence of it when I talk to fellow CPAPers; evidence of it already posted eloquently by other members in this thread; evidence of it from doctors who encourage the use of the software.

You like the word "evidence" so well, you use it "often", don't you?

Out of the thousands upon thousands upon thousands (hey, I happen to like the word "thousands" ) of CPAP pressure prescriptions, based on sleep lab PSG titrations, written each year, roster/rooster... do you honestly think the prescribed pressure setting, in and of itself, OFTEN results in "poor therapy?" You really, really believe that? And if you truly do believe that, you're basing your opinion on the bits and pieces of "evidence" you mentioned?

roster/rooster, you make the good points that cpap users would be smart to monitor their own therapy, and that to do that they need a machine that can provide AHI and Leak data. I agree (so does jnk, I believe) with that, and I haven't seen many people on this forum who would argue against that.

You're a stubborn fighter. That can be a good thing "sometimes," but I do believe your fight to hang onto the word "often" and your reasons for hanging onto it are a little.... well, ridiculous. As are your jabs at anyone who disagrees with what you said, or how you said it. And as are your jabs at sleep lab PSG titrations in general. Just my opinion.

lucynethel1998 wrote:Sorry, just saw my PDF will not post on this site. No idea how to post my data.

Lucy,
Save it page by page into a jpg... and post it on a free site... for example photobucket. Then either post links to the images or the images themselves.

rested gal wrote:I do believe your fight to hang onto the word "often" and your reasons for hanging onto it are a little.... well, ridiculous. As are your jabs at anyone who disagrees with what you said, or how you said it. And as are your jabs at sleep lab PSG titrations in general.

My solution was to put him on my 'foe' list