One more question about CPAP vs APAP

[jshu43]

I really had my heart set on getting an APAP - especially since my Apnea seems to be of the RERA variety and the new PR System One REMstar recognizes RERA's. I saw the tech person today associated with my sleep doctor and she reiterated what my doctor had said - I have a low titration level (7) and don't need an APAP and the APAP's aren't as therapeutic as a CPAP titrated by a doctor who is knowledgeable.

I could get my regular doctor to write me a script for an APAP, but then I might as well forget ever going to the sleep doctor again. I'm struggling trying to figure out what is the best thing to do.

I have Chronic Fatigue and Fibromyalgia which I heard my sleep doctor thinks there is a correlation with the RERA's. I have been diagnosed with Moderate Sleep Apnea of the RERA variety.

[Pugsy]

You may not really need an APAP but there is nothing to prevent you from getting the machine you want and using it in CPAP mode. It is essentially 2 machines in one. Auto or straight CPAP.

I had a similar situation when I was first diagnosed. Doctor said CPAP, I wanted APAP, I got APAP on my own. Found out that APAP does work a little better for my situation and at my 60 day follow up the doctor agreed and didn't have her nose all bent out of shape.

There isn't anything that prevents you obtaining your machine via your other doctors RX. Why would obtaining a different machine preclude you from further follow up with the sleep doctor? It shouldn't. I would bet money that they don't care about anything except "how you feel" on follow up. Most likely they don't even bother to look at data, mine didn't until I explained that I was having some stubborn events and showed her the reports.

It is your body and your therapy, get the machine you want. That way you won't be "what iffing" things.

[RipVW]

Well, my sleep study titration was 7 as well, and I used my CPAP machine faithfully for about a year, never feeling any better. Then I found this forum, learned about data, got software and card reader for my CPAP machine, and discovered that my AHI averaged 12! So, I bought my own APAP, it found that my real pressure need was 12, and my AHI has averaged 0.4 ever since. I know my story is probably not typical, but I'm still an APAP believer. That machine changed my life (probably lengthened it as well!). Good luck!

[Uncle_Bob]

I was also titrated at 7cm but having a hard time on CPAP.
I was at the point where I had my rx scanned into the computer and I was photoshopping the CPAP to APAP.
Finally the doctor writes me an APAP rx once I mention I will buy it myself. He had an interest in the on site DME and wanted to make max $$$ out of me. He told me he does not like APAP as he sees more problems with patients on APAP than CPAP, well that's not what I was reading here !

I can't wait to show him my data now with 0 or 0.3 on my APAP which actually uses a pressure between 6-7 most of the night. Now a pressure of 6-7 didn't do much for me at all on CPAP.

[Muse-Inc]

...she reiterated what my doctor had said...APAP's aren't as therapeutic as a CPAP titrated by a doctor who is knowledgeable....

Run away, quickly!

...I could get my regular doctor to write me a script for an APAP, but then I might as well forget ever going to the sleep doctor again...

Not if the doctor is really interested in being a doctor and not just getting $ outta you and your insurance.

[mars]

Hi jshu43

With using an auto I have discovered that I can get the same AHi (2.5 including centrals) with both cpap and apap.

So what I am now looking at is clusters, length of uninterrupted sleep, number of times I get up during the night, leak rate, how I feel, and no doubt I will think of a few more things as time goes on.

I would follow the advice from Pugsy. If you get an apap, you can try try out different setting on both auto and cpap, and find out what is best for you. Obviously, once you get a cpap, you are limited in what you can check out.

I have not yet worked out which is best for me, but I am beginning to think that a difference of 0.1 or 0.2 AHi may not be that important if there are other factors to be considered.

I am enjoying checking things out, and know I would feel limited if I did not have an auto to try all these settings.

Good luck.

Mars

[Wulfman]

I really had my heart set on getting an APAP - especially since my Apnea seems to be of the RERA variety and the new PR System One REMstar recognizes RERA's. I saw the tech person today associated with my sleep doctor and she reiterated what my doctor had said - I have a low titration level (7) and don't need an APAP and the APAP's aren't as therapeutic as a CPAP titrated by a doctor who is knowledgeable.

I could get my regular doctor to write me a script for an APAP, but then I might as well forget ever going to the sleep doctor again. I'm struggling trying to figure out what is the best thing to do.

I have Chronic Fatigue and Fibromyalgia which I heard my sleep doctor thinks there is a correlation with the RERA's. I have been diagnosed with Moderate Sleep Apnea of the RERA variety.

"Data capability" (along with availability of software and a way to read it) should be of primary concern when getting a machine (along with a good-fitting mask).

If you look at my profile (below), you can see how many Autos/APAPs I have......but I use them all in CPAP mode. I worked out my best pressure with a data-capable CPAP before purchasing my first APAP......and then found out that the changing pressures disturbed my sleep. Periodically, I'll switch one over to APAP mode and a range of pressures for a nap......just to satisfy some curiosities......but for nighttime sleeping, it's single pressure for my best sleep.

HOWEVER.......
This is YOUR therapy. They shouldn't be able to dictate to you what make/model/type of machine you get. YOU are paying for it (through insurance premiums, co-pays and deductibles) and that is what you need to get through their little, narrow-minded brains. Then YOU can decide what gives YOU the best therapy.


Den

[ozij]

You could try something like the following with the doctor:
"Since you diagnosed RERA's, and the new Respironics machine claims to handle them, I'd like to give it a try. I'm sure you know any APAP can be run as a CPAP, and by buying an APAP, which I can try in both modes, I'm giving this therapy a better chance of success. I want it to succeed very much, and of course if APAP doesn't work, I could switch it back to CPAP. I'll ready in CPAP mode, but I do want to give this new APAP a try. If I buy a CPAP, neither you nor I will know if the new Respironics PR might work be better for me in my natural sleep environment"

APAP's aren't as therapeutic as a CPAP titrated by a doctor who is knowledgeable

As far as I know, doctor's don't usually do titrations - was he really there when they tried the pressures on you?
.
Perhaps if you make it clear to the doc that you have every intention of making this succeed, in whatever mode, and that your suggestion does not come from distrusting his titration, he'll understand.

If he refuses to let you experiment then he neither respects you, nor has your best interests at heart -- and I would look for another doctor.

Since the PR has no software at this point, I would start it out on CPAP, by the way, because that makes trouble shooting easier.

O,

[jshu43]

Thanks everyone for all the replies! I thought I had been talked into getting a CPAP until I read everyone's input. It makes a lot of sense that I can get an APAP and run it on CPAP mode. I would be stuck with a CPAP no matter what.

My sleep doctor is associated with a big hospital in Houston that has a Sleep Center. I do think he is really smart about reading the sleep study reports. I had some sleep studies that other doctors had some problems with and he really seemed to know his stuff. The tech told me that my doctor had been onto the link between Fibromyalgia, Chronic Fatigue Syndrome & Apnea of the RERA variety a long time ago. I have really been ill, and am excited that maybe the addressing them will make a big difference.

I haven't really liked him though. He seems very dictatorial and doesn't take any of my concerns seriously. But I do respect him. I don't think he gets money off of the machines, I think he just likes things his way. I know that no amount of talking will convince him to write me a script for an APAP as I already tried that. I'll just have to go with my internist who is pretty clueless about sleep stuff, but she is very open to whatever I think may help.

But now my problem is what machine to get. I really want to try the PR System One REMstar as it would maybe address the RERA's. But if I get no data feedback, I wouldn't have a clue how it's going. If I got another machine, maybe it wouldn't ramp up enough to address the RERA's. Course, I really have no idea what I'm talking about!

Thanks again everyone - it feels so great to have others out there to no feel so alone in all this.

[ozij]

I had some surgery done for my sleep apnea as my oxygen levels were so low - 67 & 69 on two different studies. It helped my oxygen and helped with the apneas, but I still have sleep apnea.

Was that a UPPP? I don't know about the PR -- but UPPP does seem to make other APAP's less useful.

CPAP (fixed pressure) can address you RERA's but supplying enough pressure to keep your breathing stable and to keep you from waking up.

O.

[jdm2857]

Two things.

Philips Respironics just came out with two more System One machines: the Pro (a CPAP with full data) and the Plus (with compliance data only). So be sure to specify that you want the PR System One Auto.

Someone correct me if I'm wrong, but without the software, which as noted above is unavailable, I don't believe that you can access any data about RERAs. The efficacy data that is available on the machine's LCD display is pretty limited.

[jshu43]

Was that a UPPP? I don't know about the PR -- but UPPP does seem to make other APAP's less useful.

CPAP (fixed pressure) can address you RERA's but supplying enough pressure to keep your breathing stable and to keep you from waking up.

O.

Yes, I had a UP3, and I have heard that it might cause me problems with my machine. Is it problems with all machines or just the APAP's?

[jshu43]

Two things.

Philips Respironics just came out with two more System One machines: the Pro (a CPAP with full data) and the Plus (with compliance data only). So be sure to specify that you want the PR System One Auto.

Someone correct me if I'm wrong, but without the software, which as noted above is unavailable, I don't believe that you can access any data about RERAs. The efficacy data that is available on the machine's LCD display is pretty limited.

Yes, I heard that you can't get any date from the PR System One. So frustrating, as it might be the perfect machine for me if not for that. I guess getting a machine that will address the RERA's would trump the reporting part of it. The actual efficacy is what I need to focus on. But I hate to get a machine that I may regret because I can get no data.

[ozij]

viewtopic.php?p=397428#p397428

........Wonder what the RERA event-detection sensitivity and specificity happens to be for a non-EEG assumption like that. Certainly not as accurate as detecting RERAs via PSG's flow and EEG channels I would think.

.......

If you think outside the box, you realize it is more accurate. The sophisticated in-lab equipment is measuring a patient in the strange sleep lab environment where he is not sleeping like he normally does. It's a one night measurement costing, what, $1700 - 2899?

The PR System is measuring the patient in his own home in his own bed under conditions identical to what he normally will sleep under. The PR System can do many nights of measurement for under $700.

Get those finally tuned results from the sleep lab and without your own monitoring tools at home, you have no idea whether the lab results apply to the at-home setting and often they don't.

That's a very good general argument for any patient having trouble sleeping in the PSG IMHO. In some cases the PSG environment literally alters the very sleep that it proposes to study or measure. I'm one of those patients who sleeps poorly in the lab. Regardless, the technicians managed to nail my 10cm at the titration, despite my repeated wakefulness.

What the techs probably couldn't nail because of my lab-induced wakefulness: my sleep architecture.

What the PSG techs can probably nail MUCH better than this APAP method IMHO: a RERA problem.

I say that because a RERA problem is based in: 1) high resistance that will manifest in any sleep stage unlike many apneas, and 2) heightened susceptibility to arousability itself. Not all high-resistance breathers suffer RERA problems during their sleep. So just how do you accurately distinguish those two patient types with nothing but a single APAP flow-data channel?

Any machine will "address" your Respiratory Effort - providing the pressure is high enough. In you case, the Respiratory Effort Related Arousals seem to have been be handled fine in the lab by a pressure as low as 7 -- which means fixed CPAP pressure addresses your RERA's.

And I trust -SWS on RERA's and sleep stages, as quoted above.

Yes, I heard that you can't get any date from the PR System One. So frustrating, as it might be the perfect machine for me if not for that. I guess getting a machine that will address the RERA's would trump the reporting part of it. The actual efficacy is what I need to focus on. But I hate to get a machine that I may regret because I can get no data.

I've been looking of the new "PR system" on both Philips' site and Respironics' and couldn't find it -- I only get sales sites when I google the terms. That's very strange. I'm beginning to think most of that RERA text is PR of the old kind. And that the main change is the systems response to mask resistance.

UPPP can cause problems with maintaining pressure with any machine,and it can keep APAP from identifying conditions necessary for rasing the pressure. It could be one of the reason's your doctor wants you on a full face mask -- that way the nose -mouth gap caused by the UPPP doesn't matter.
The more I think of the information you've given us, (on the titration results thread as well), the more I get the feeling you can trust your doctor.

O.