CPAPtalk.com

Gee, RPalmer...your words are much too kind, really! Take anything I write with a grain of salt, because I've been wrong many, many times.

If I were getting a machine for the first time today....hmmm. Using this scenario -- that I'd never tried any cpap or autopap and had no idea of what pressure I needed or whether I'd be able to exhale well against it, I'd get the Respironics REMstar Auto with C-flex. I'd also buy the Encore Pro software/card reader to go with it.

If it turned out that I didn't need or like C-Flex, I could always turn that off.

Actually, since I really don't have trouble exhaling against the pressures that it has turned out I use, my favorite machine of the autopaps is the PB 420E auto - for it's size and for the software that is used with it...Silverlining.

But if I were starting from scratch with no idea which auto's features I needed or didn't need, I'd go with the REMstar Auto/C-Flex. That's the machine I currently use and like very much. (My 420E went to a friend who needed its particular advanced settings more than I did.)

My "sleep doctor" (pulmonologist) GUESSED at what my pressure should be (18cm with extra oxygen).....based on what he THOUGHT the CPAP machine I had been hooked up to for the last part of the evening that I had my sleep study had been set at (16?). He also thought I would need surgery on my throat to open up my airway further.
Upon receiving my machine, I tried the recommended setting.....for about a half an hour.....then set the machine at what I thought would be reasonable starting settings (10cm and flex setting of 2) and tried that. After about two days, my apneas disappeared almost entirely and my hypopneas were less than 2.0 and going down. I haven't changed the settings since and my AHI is usually less than 1.0 (it tends to fluctuate between .4 and 1.1 lately). My Snore Index is also a fraction of what it was in the beginning. I believe these settings are working for me.

Needless to say, I have become very skeptical about what these people (medical and DME suppliers) really know about treating their patients and clients. Between my experiences and what I've read in this forum, I have developed a VERY dim view of this field of medicine.

Wulfman wrote: ....Needless to say, I have become very skeptical about what these people (medical and DME suppliers) really know about treating their patients and clients. Between my experiences and what I've read in this forum, I have developed a VERY dim view of this field of medicine.

Sadly, your experience (and opinion) reflects that of hundreds who frequent this message board. Obviously there are some great docs/DMEs out there and for the CPAP-users who are lucky enough to have them, this forum is probably unnecessary and even redundant.

As for the rest of us; we've discovered through necessity we must take this treatment into our own hands in order to receive the best possible therapy. We got where we are today through self-education, experimentation, and sharing experiences.

Every so often an angry DME/RT comes across these forums, filled with indignation and self-importance claiming we don't know what we're doing and in fact, we should NOT be doing anything other than blindly following their orders. They claim we shouldn't even have access to our own data, let alone use auto machines, conduct self-titration experiments and adjust our own pressures based upon the optimal results as indicated by nightly reports (via software they insist we shouldn't be allowed to buy).

This is an understandable view on the part of the DME/RT, given their income is the direct result of our reliance upon them. This industry is HUGE BUSINE$$. One need only compare their charges for items they decide we should have (not necessarily based on anything other than what the THOUGHT we might need, as you pointed out), with the cost of the very same items on cpap.com (and other internet suppliers).

Thankfully there are now well-educated CPAP users such as yourself, spreading the word. Imagine if you didn't know what you know now. You'd be hooked up to the unnecessary and uncomfortable pressure of 18cm. Period. End of story. (Or worse, you'd have quit therapy altogether.)

The true victim in all this is not the DME/RT whose CPAP therapy business will continue to dwindle as users become more proactive. The true victim is the user who did not continue his or her therapy because it was inappropriately prescribed, reviewed, updated and maintained.

Even though reading about an experience such as yours with medical professionals in this field is very troubling and far too common, it is always very encouraging to hear how self-education has resulted in successful therapy. Very, very encouraging.

Thanks for your quick response, RG! And you're wrong again. Judging from all the praise I see heaped on you by other users of this forum, my words were not only not too kind, they're probably an understatement.

Then right after your response, as if on cue, Wulfman wrote:Needless to say, I have become very skeptical about what these people (medical and DME suppliers) really know about treating their patients and clients. Between my experiences and what I've read in this forum, I have developed a VERY dim view of this field of medicine.

You may have been wrong many, many times, but you obviously have the intelligence to learn from your mistakes. A wise person once said "Don't be afraid to make mistakes. We learn far more from our failures than from our successes." Unfortunately, way too many of the DME's & other medical people Wulfman's referring to (he & I must know many of the same ones) are too arrogant to think they've ever been wrong or made a mistake, so they never learn. Your advice is that much more valuable because you have made the mistakes.

Why do you prefer the Silverlining software over the Encore Pro software? Do you know if either are compatible with Mac (I'm just getting lazy here, I'm sure that's something I could find out on CPAP.com, just thought you might know)? I think I've read you recommending heated humidification on one of your posts, which I would certainly endorse. Is your humidifier integrated with your AutoPAP or a stand-alone unit? Which would you prefer?

Thanks again!
Rol

Hello rpalmer. I was curious about rested gal's choice also, so I used the Search function to look it up and here's what rested gal said:

Posted: Sat Jun 04, 2005 9:33 pm Post subject:

--------------------------------------------------------------------------------

I used a Fisher and Paykel HC 150 separate heated humidifier for almost a year with my first auto - the 420E. I actually preferred the separate humidifier instead of the integrated ones that I used later with 3 other autopaps.

I liked being able to set the humidifier where I wanted it, closer to the floor.

I really liked the adjustment knob on the front of the F&P humidifier - easier to reach down in the dark, feel for it, and turn the heat up or down a bit; instead of having to get up, turn on a light, put on glasses, and mess with punching buttons on top of the autopap just to adjust the heat a notch in the middle of the night.

I liked the F&P humidifier itself. Worked very well. Easy to fill from the top. And if a person is into dumping/cleaning a humidifier chamber often (I'm not), "separate" makes that a lot easier.

Repeated removing/reassembling of an integrated humidifier chamber at the connection into the machine probably does more wear and tear to the connector than just removing the plastic connector of the short hose to the separate F&P humidifier.

Actually I rarely ever remove a humidifier chamber. I just use a funnel to add more distilled water as needed. Both the REMstars' heated humidifiers were easy to fill from on top, as was the separate F&P.

The integrated humidifier that came with the ResMed Spirit, though...yechh. The machine was good. The integrated Humidaire II humidifier was the pits. Very unhandy to fill - no way to fill it from the top the way I could do the others. Also didn't seem to put out as much heated humidification as the others.

The integrated humidifiers with my two Respironics REMstar Autos (one with C-Flex) worked fine. So did the F&P HC 150 separate heated humidifier with the 420E.

I've not tried the integrated humidifier that people can get with the 420E now. If the adjustments are on the back of it, as I've heard, that doesn't sound very handy. However, if the adjustment is a knob, that would be good - even if on the rear of the humidifier. Any kind of dial knob beats having to punch buttons on top of a machine during the night.

I think in the future I'll just go for a separate heated humidifier instead of integrated. Handier all the way 'round, imho.

Am about to do a search to see if I can find out what she has said about SilverLining.
(Using that Search function is almost like having rested gal right here in my office!)

Again from rested gal:

The Silverlining software is the best, imho. I still love that very informative "96 hour graph" better than any way that the other two brands' software present overnight info.

The two software packages (Silverlining 3 for the 420E Autopap and Encore Pro for the Respironics REMstar Auto) each have their own strengths. Except for the missing simple "AHI" number, I think the SL3 software is much better - just my personal preference. I hate math, but doing the math myself to figure the AHI is a minor inconvenience compared to the beautiful convenience of being able to look at that informative 96 hour graph in SL3. I really miss seeing that graph in the Encore Pro software. One can compare nights in Encore Pro, but not as easily or as comprehensively, imho, as one can by scrolling left and right through the SL3's 96 hour graph.

All this is from using Search function. Cool, huh?

rotfl!! Gosh, did I really say that?

Thanks, Guest. You did all the work!

Guest (Anonymous) wrote:Am about to do a search to see if I can find out what she has said about SilverLining.
(Using that Search function is almost like having rested gal right here in my office!)

And then....

All this is from using Search function. Cool, huh?

Very cool!

Thanks, Guest, Anonymous, or whomever you are. And thanks, RG, for having written all this in the first place!

Rol

A constant 13 setting for me.

Wow!! I am stunned at how many of you are wearing auto-paps. I compared them during full polysomnography recordings and they just aren't very reliable. I don't disagree that you should have a say in your health and well being, and if auto-pap feels good for you then by all means keep using it. It just dumbfounds me that you all just trust the manufactures word with regard to your RDI ect. If auto-pap were that reliable I would use it during the recording and take a nap myself. It is not that simple. Basing your RDI on one flow channel is insane. Im not an angry rt or dmi but I am trained in polysmonography and hold a degree in neuriodiagnostics. There is no right or wrong here with regards to using auto-pap. Just understand I don't make any more $ wether u wear cpap or auto-pap. I get paid the same. I would never send anyone home on auto-pap and be able to sleep right myself.

I compared them during full polysomnography recordings and they just aren't very reliable

Did you publish the results of this comparison in a peer reviewed journal? Can you give us the reference?

Are you aware of the following, published int Chest in Aug 2000, Mild to Moderate Sleep Respiratory Events*
One Negative Night May Not Be Enough
This does imply that the reliability of one night PSGs is not what one would wish for. Have you implemented changes in you PSG protocol, based on those results? Do you sleep soundly when you send people home with no treatment after a single night's test?

Are you aware that we meet our patients every morning, discuss with the how they feel and base changes in their recommended pressure on that?

Could you please share with us the following info:
1. What is your follow up protocol after you've given the pressure recommendation? Specifically: how many times have you spoken to each patient after sending them home?
2. How many patients have you invited for retitration because they weren't feeling well enough? How many time have you retitrated each of those patients - once, twice, three times?
3. What is the compliance percentage among your patients after 1, 2, 3, 4, 5 and 12 months?
4. Could you give us references to peer reviewed articles supporting you contention that APAPs are unreliable?
5. Do you know the distiction between "measurement reliability" and "measurement validity"?

As far as autopap users are concerned, they couldn't care less if one machine's pressure of 10 is another's pressure of 11 - since we do not recommend pressure to others. I am happy when my manchine helps me feel well.

If you were to register, you could run a poll of autopap users; as you noticed, there are many of us here. I would suggest you ask the following questions:
1. Did you have a PSG?
2. Did you start out with CPAP?
3. Did you feel happy with the straight pressure?
4. Did you switch to APAP?
5. Do you use APAP
6. Do you use you APAP in CPAP mode or APAP mode?

Do you really think we are idiots, using the wrong machines to treat us, without even being aware of the fact that the treatment is wrong?

How come we sleep well at night, with our autopaps?

Thank you.

O.

Apap may not be for everyone. I have a machine that does it all and I fequently go straight cpap or with a minimum range apap. The problem I have with the sleep technician's/doctor's comments is his attitude toward the patient which seems to be the patient is a dummy and I'm the expert. The patient obviously wants to be proactive in his treatment and this is a good thing and should delight the sleep doctor. This being the case the doctor or prescriber should be sensitive to the patient's needs and desires. The difference in cost between a basic cpap machine and a full featured autopap is next to nothing in the overall scheme of things. The point is, the patient will never be able to fully participate in this forum, and his treatment, with a minimal machine. He/she will always want to try the apap and cflex to see if that can provide improvement in AHI and will always regret the purchase of the minimal machine. Whether or not the apap will help this patient is irrelevant. It just might help a lot and the patient deserves the opportunity. Lesson for the doctor, don't get too carried away with your own knowledge and likes or dislikes, and put the patient first.

Sleeper wrote:Wow!! I am stunned at how many of you are wearing auto-paps. I compared them during full polysomnography recordings and they just aren't very reliable.

Could you please provide us a link to your comparison study? Other studies refute your claim so would be very interested to see your data. Meanwhile, while we wait to receive that, here is some pertinent reading:

"Sleep Doctor" doesn't like autopaps (5 page topic)

and

Finally slept through the whole night.... (3 page topic)

I would never send anyone home on auto-pap and be able to sleep right myself.

The link below is a Powerpoint presentation at a meeting of the American Lung Association of the Central Coast - November 2004 by a sleep doctor who advocates that some patients who have obvious signs of OSA should be put directly on autopaps (auto-titrating cpap) without having to go through a PSG sleep study.

"Not Every Patient Needs To Go To the Sleep Lab" by Barbara Phillips, M.D. MSPH (requires Macromedia Flash to view)

That smart sleep doctor is:
Barbara Phillips, MD, MSPH, FCCP
Professor, Division of Pulmonary Critical Care and Sleep Medicine
Director of the Samaritan Sleep Center
Department of Internal Medicine
University of KY College of Medicine
Lexington, KY

The last several pages of that presentation are replete with cites.

Sleeper (Guest) - I do agree with you that a full PSG can reveal much more information about a person's sleep architecture and sleep problems than any autopap ever could. There can be many things other than just obstructive apneas/hypopneas that disturb sleep. RLS/PLM, for example...things an autopap cannot "see." Also centrals that autopaps cautiously suspect sometimes, but miss completely sometimes. And much more.

But, for plain vanilla OSA (the major problem, imho, for most people with sleep disordered breathing) modern auto-titrating machines (autopaps) do remarkably well finding the correct pressure to use in a person's normal sleeping environment - at home. More than one clinical study supports that, several of which are cited at the end of Dr. Phillips' powerpoint presentation.

Of course, the question remains, "If you don't go through a full PSG, how would you know if simple OSA is the only sleep disorder you have?"

If a person still feels bad weeks after autopap or any kind of PAP treatment is optimized at home, then certainly more would need to be looked into by good doctors.

I count everything as needing to be optimized - mask, control of mouth air leaks, enough comfort with the pressure and the equipment to sleep 6 hours or more per night. Comfort with one's total sleeping environment - mattress, pillows, no outside disturbances, handling other health issues that can disturb sleep such as arthritis, asthma, GERD, nasal breathing difficulty, etc.

It might not be just OSA disturbing one's sleep. Might be as simple a thing as replacing a saggy mattress to get that last piece of "good sleep puzzle" into place. I'm not sure if even a PSG would reveal that.

I figured someone would take my to the wall on this issue. Let me again state that what most of you are doing is not wrong as far as experimenting with the APAP. I totally agree that if you are sleeping better than by all means keep doing what your doing. I think the argument here is that people feel that they are doing a better job of ultimate titration than the PSG tech did in the sleep lab. Heres where the sleep techs stance differs from that of the pt. My #1 goal is an ahi of 0. Not 1.3 or 3.2 or 5.7 but 0. Now that being said there is no possible way that an APAP machine can run in a variable mode and achieve an ahi of 0. If anyone can provide me with a study where that is achieved I would strongly ? the findings. I on the other hand have run many pts to an rdi of 0 minus a transitional event here and there such as a hypop after extreme spontaneous arousal. That happens in normal subjects as well. APAP is reactive to ones own respritoty output. Meaning if u need more u get more. The apap has to have some variance in information to increase the pressure that means you have just had an event in which required the machine to increase pressure. This happens often. This is a reactive approach to titration. Cpap at the proper titrated pressure is proactive. You are covered throughout the night at 1 constant pressure. Sure it is passive/agressive as in stage 1 sleep your cpap setting is working hard to keep ahi at 0 as opposed to stage 3 where you may be over titrated. However your ahi has remained at 0. I am not saying APAP is not good for some pts. I guess I take offence to people telling me that I don't care and that I don't know what Im doing as a registered PSG tech just because people claim apap is more reliable compared to a titration study. My CPAP titration would have a lower ahi compared to any APAP machines head to head period. That being said I understand that there are alot of idiots running tests out there. They know nothing about the science behind the test nor do they care about the Pt. I care very much and to answer just one of the questions put forth to me. When I have to send someone home without titrating them that is not in my hands. The insurance provider sets those thresholds for which I must follow or they don't pay and the pt. gets stuck with the $1500 bill. Thats not to say Im not upset that they have to come back again when I know they could have walked out of the lab on cpap that first night but my hands are tied when it comes to policies and procedures set forth based on insurance requirements.