Replies to This Discussion

Permalink Reply by Duane McDade on May 1, 2009 at 11:40am

ok now we're talking a bi-level is a a whole new ball game. So your pressure is between 8 and 13. But you did not tolerate the CPAP? because maybe you felt like you were not able to exhale or something. That's common. I still do not think that auto PAPs do anything but make people think it's helping, and that's good too. But the little tube thing it does not adjust correctly if you cough or swallow it takes 20-30 minutes to recover. Still there are too many variables its best to have a consistant pressure.

Judy said:

The reason I question this is because I had an in-lab bi-level titration in March of 08. Results: IPAP 13, EPAP 8. No mention of a high Leak rate.

I had a second in-lab bi-level titration at another lab in Oct 08. Results: IPAP 10, EPAP 5 and a chin strap the last half of the night.

No weight change. No other health issues or changes.

I was sleeping better - finally - at straight CPAP of 8 cms after some struggles from March 07 to March 08. I noticed improvement on bi-level IPAP 13, EPAP 8 in VPAP Auto mode March 08 to Aug 08 when doctor switched me to VPAP Auto in Spontaneous mode rather than auto mode. And THAT was a step BACKWARD. A disconcerting "puff" at the end of inhalation, beginning of exhalation that destroyed efforts to get to sleep and maintaining sleep that I did NOT experience in auto mode. Yet 3 doctors at the sleep lab were unable or unwilling to even discuss much less determine the cause. My DME's RT had no idea. The sleep doctor at the Oct 08 sleep lab wasn't even willing to discuss it, just do another titration. We did. IPAP 10, EPAP 5, chin strap. And STILL the disconcerting "puff" at end of inhalation and end of exhalation in Spontaneous mode. So I said "screw it" and went back to auto mode and sleep the best so far and W/O the disconcerting "puff".

Get rid of that disconcerting "puff" at the end of inhalation and beginning of exhalation and I'l be MORE THAN HAPPY to use my VPAP Auto in Spontaneous mode rather than auto mode. But NOT UNTIL.

I do have COPD and do use 2L of 02 supplementation w/my VPAP Auto. The Oct 08 bi-level titration doctor didn't order the 02. And after handing me the printed out script, he took it back and handwrote the addition of 2L of 02 supplementation.

I use the S8 ResLink and Nonin XPod oximeter and sensor every night and the ResScan 3.7 software and cable reader and have experimented w/and w/o 2L of 02 and I definitely need the 2L of 02 supplementation.

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Permalink Reply by Judy on May 1, 2009 at 11:54am

I "tolerated" CPAP, it certainly, after the first 3 months or so, was an improvement over my sleep the previous 12 years - but not a heck of a whole lot. And it took 2 pressure changes and a 3 week loan of an autoPAP for a 3rd pressure change to get to the point of some decent sleep. (Plus the elimination of Ramp and EPR (altho they were appreciated at first when I was really struggling).

I got discouraged w/the lack of assistance from a sheister DME supplier and the long gaps between seeing the sleep doctor and his only interest in the stats and not answering my questions so I let things ride for several months, almost a year, and then decided I HAD to get better sleep and wondered how the devil I had functioned as well as I had for as long as I had.

I also changed local DME suppliers. When I was switched to the bi-level and then from auto bi-level to spontaneous mode and went back to auto mode on my own I opted to try for better luck w/another sleep doctor. HE WAS THE WORST OF THE LOT!!! Altho the RPSGT picked up right away on my high leak rate when I showed the RPSGT my ResScan results on my laptop. UNFORTUNATELY, that wasn't the RPSGT who did my titration. *sigh* That first RPSGT couldn't do my titration due to having to do some training that night. I don't know if the tech doing my titration was an RPSGT or a "trainee".

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Permalink Reply by Duane McDade on May 1, 2009 at 12:01pm

It's very plain to me that them there fancy words they be using in that there auto-pap book have got you turning cartwheels! You can believe what they write if you want this is America Still, at least it was last time I checked.
I surrender Jeff, I can't and don't want to pull up web sites to prove my point, I didn't say I just saw Bigfoot, or anything like that. I do these Sleep Studies almost every night, and thats my reference guide. I just hope they feed the chimps that they test these machines with you talking about, I've a good mind to call SPCA on them. The Doctor I toil under has only been in this field for 30 years , and he doesn't think too much of auto-paps too! It's your sleep do what you want, but don't try to treat the other patients here, thats all I ask. The companys that make this stuff are trying to make $ they say anything to do that. Auto needs more parameters to not just a tube and pressure sensor. It's not enough. CPAP AND BI-LEVEL RULE! AND VPAP when needed too! I'm out!

j n k said:

Rock,

I advocate getting a sleep study with a titration. It's the right thing to do, in my opinion.

I also advocate giving an auto-titrating machine to every patient. Not so that the machine can auto-titrate every night with it set wide open. But so the patient can use the machine in a restricted range and use the efficacy data to optimize therapy effectiveness and comfort.

A titration is a snapshot of one night. A very VALUABLE snapshot that every patient needs, in my opinion, but a one-night snap nonetheless. It is a good starting point. But it is just a starting point, especially for many patients whose needs fluctuate over time--overnight and over the months and years.

I agree that the algorithms in the auto machines are far from perfect and that they don't work quite as advertised just yet, meaning, set wide open 4-20 cm. Used that way, you are absolutely right that the patient will have a higher AHI than using straight CPAP or BPAP. But if the data is looked at and the machine's range is restricted a bit based on that information, an APAP can be a beautiful thing. And for some patients, having a slightly higher AHI but being compliant is better than being stuck at high pressures and the patient then giving up on therapy completely.

Please note that every APAP can be run as a straight machine too. So giving a patient an APAP doesn't force the patient to use it in auto mode all the time. But it gives the patient, or doc, the ability to check to see the numbers, since APAPs are all efficacy-data machines.

I will use myself as an example. I have lost 25 pounds in 10 months. But I don't have to go in for another PSG to see if my needs have changed. I was able to see my data and see that I could lower my pressure by about 2 cm and have my OSA fully treated without suffereing from the aerophagia I had been dealing with. Do you really think my doc would have cared enough about my aerophagia to order a new PSG, or that insurance would have paid for it? No. But giving me the APAP gave me the tools to deal with my problem to increase my comfort, improve my quality of life, and remain compliant. Otherwise, I would have been stuck at the prescribed pressures, which I no longer need.

A PSG titrates a patient for sleeping on his/her back. If I find a way to stay off my back, since my OSA has a positional component, my pressure needs are different. An auto can deal with that better than anything. Should a patient be required to sleep with the pressure needed to deal with REM in supine ALL NIGHT? That is unduly high pressure that may keep the patient from being compliant. And there is no need for that patient to deal with that.

The question is actually academic, since autos are here to stay. The only question is, do we force patients to run them wide open, 4-20, or do we teach patients how to self-titrate using the information their auto-titrating machine gives? Not every patient will understand how to do that, just as not every diabetic understands how to monitor their needs day to day either if they don't get the training they need and the support they need. So the answer is training and support. They will be the keys to future patient comfort and compliance.

For me, expecting the sleep doc to discern my pressure needs night to night, week to week, is like expecting a doc to exercise for me and plan all my meals. It's my life. I have to be the one who exercises, eats properly, and sleeps effectively. All I ask is for the tools to be able to do that and the guidance to find my way. Medicine is for the purpose of helping the patient, not getting in the patient's way. It helps the patient to get him/her a PSG. But it also helps the patient if he/she gets a full-data machine that has capabilities the patient may choose to use to be comfortable and compliant.

I fail to see how anyone who truly cares about patient comfort and compliance could argue against allowing patients to have the latest technology available to them, which the patient may choose to use or not to use.

Insurance doesn't care one way or the other, since APAPs have the same codes as stripped-down CPAPs. If the docs don't mind, and insurance doesn't mind, what possible reason could a tech have for objecting, other than, perhaps, job-security issues? ("Hey, I won't have a job if people don't have to come to the lab all the time to find out what pressures they need!")

Give the patient what the patient needs, give the patient options, train the patient, and it will all work out. Because it SHOULD be all about the patient. If it isn't, this industry is way out of whack and will go down under its own weight eventually.

jeff

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Permalink Reply by Judy on May 1, 2009 at 12:27pm

OOOOPS! I LIED! I weighed my usual 108-111 lbs at the time of the Oct 08 bi-level titration ( 108 lbs that Monday and 111 lbs the Friday night of the titration (two different scales). By February I weighed 127 lbs. I'm bouncing around between 123 and 126 lbs the last two weeks. TRYING to get back down to 120 lbs or even 115 lbs. This is the MOST I've ever weighed except for pregnancies. I don't like it.

I was thinking of the past up to this point and forgot about the weight gain this past 6 months. My apologies. It wasn't intentional.

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Permalink Reply by RockRpsgt on May 1, 2009 at 3:13pm

First of all I think we got a little off track. I was talking straight Obstructive apnea. Not central with underlying causes. Not for use without a titration. Honestly in place of a titration, however wrong it may be, is honestly the best argument I have heard so far. Judy COPD makes your case special and adds a whole different set of circumstances to your treatment. You should be on VPAP. Hopefully we can help you get it to work. Jeff maybe everyone should be given an auto machine. I definately have to agree with Duane on the fact that there are not enough guidelines or education for these machines. In a lab setting people sleep in all positions and we are able to make the apnea go away 99% of the time. Carol your range is too high in my opinion. Take for instance those truckers I was talking about in an earlier post. I was to prove that they had apnea then set them up and educate them on an auto system ranged at 4-20cmwp. No follow up, no pass fail ratio. I am just saying that truckers are not the only demographic getting this type of treatment. Honestly the AASM guidelines require that a patient fail normal CPAP before any other type of treatment is allowed. Judy as of July 2010 every tech that runs any type of sudy or interpretation there of is required to be certified by the BRPT.
At that point the only difference between techs will be the level of commitment.

Attachments:

• PAP Protocol 2009 pdf.pdf, 4.8 MB

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Permalink Reply by Judy on May 1, 2009 at 6:54pm

Thank you, Rock Hinkle for that link! Goshes! That protocol even says bi-level titration should BEGIN WITH PATIENT'S OWN EQUIPMENT AND MACHINE!!! At least for the first two hours. And it assumes a Patient PAP Orientation BEFORE the titration study - or at least before the study is begun. IMPRESSIVE! And WHERE does this occur? WHAT sleep lab does this? Is there a Utopian Sleep Lab somewhere? *wicked grin*

I'm one who firmly believes patients should ONLY be provided w/fully data capable xPAPs. Even if the patient isn't interested, their doctor SHOULD be. I bought my own APAP out of pocket. Simply in self-defense when I realized the lack of true interest by my sleep professionals. But I used it almost exclusively in straight CPAP mode. Much the wiser by the time I was switched to a bi-level I INSISTED on a fully data capable auto bi-level, again simply in self-defense due to the lack of any real interest by my sleep professionals. I will echo what has been said MANY times ... you can use an auto in straight PAP mode OR in auto mode. But you can't make a straight PAP an auto.

And by the way: when I first started CPAP back in 2006 and in January 2007 was put on a loaner autoPAP for 3 weeks by a sleep pulmonologist/critical care specialist? The pressure range was from 4 cms to 20 cms. Even "I" knew at that time that that was a STUPID thing to do!!!! The only reason I went along w/it and didn't narrow the range myself was because I had just had a spiral CT scan of my lungs the week before and knew there were no visible blebs. (I had had a spontaneous pneumothorax back in the early 1980s and I was aware of the risks).

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Permalink Reply by RockRpsgt on May 1, 2009 at 11:06pm

Now that I have had some time to think about it I do see the need to give patients these machines. I Just think that the parameters need to be a little bit tighter with them as Duane said. The research I ahve found on positional therapy alone makes these machines worth it. You just have to wonder how of these machines are going out with the proper guidance.

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Permalink Reply by Judy on May 1, 2009 at 11:29pm

I don't know about the NEED to give every patient an auto PAP. But I would NOT accept anything less than a fully data capable xPAP.

Hmmm. Come to think of it, tho .... if you NEED the full data capability to check your data yourself because you can't rely on your sleep doctor .... dang! Maybe most all patients should be provided w/an APAP. As long as it is fully data capable.

The reason I pushed my doctor for the loaner APAP when I was first started on CPAP in the fall of 06 was because I only slept 42 minutes out of 6 hours bedtime my first titration and had to go back for a second titration - and only slept 98 minutes out of 6 hours bedtime so I didn't have a whole lotta faith in the titration results. And when he made 2 pressure changes "by guess and by gosh" I just decided "enuff is enuff"!!! Either script a loaner APAP or I'm returning the entire kit and kaboodle. Heck, my first 30 nights on CPAP were the WORST sleep of my entire life (except for those two titration nights)!!

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Permalink Reply by Duane McDade on May 2, 2009 at 9:19am

what the heck are you talking about ??? AASM is not standing berhind these auto machines, CPAP, Bi-LEVEL and VPAP thats what they back ...these have been proven to work. Have you been reading the lastest articals in the AASM magazine? I don't get the idea that they back these things with even a 30% approval, but that would just be the articals I choose to read. We arn't rebelious around here we just want our patients to get better. Do you work for resperonics or something I'm amazed by your zeal here! What's up Dude?
j n k said:

You and your doc aren't the first to take a stand that differs from AASM, and you won't be the last. I don't agree with them on everything, myself. And that's cool, as long as it doesn't affect anyone's accreditation.

More people may be on the same page after July 1. ;-)

Duane McDade said:

It's very plain to me that them there fancy words they be using in that there auto-pap book have got you turning cartwheels! You can believe what they write if you want this is America Still, at least it was last time I checked.
I surrender Jeff, I can't and don't want to pull up web sites to prove my point, I didn't say I just saw Bigfoot, or anything like that. I do these Sleep Studies almost every night, and thats my reference guide. I just hope they feed the chimps that they test these machines with you talking about, I've a good mind to call SPCA on them. The Doctor I toil under has only been in this field for 30 years , and he doesn't think too much of auto-paps too! It's your sleep do what you want, but don't try to treat the other patients here, thats all I ask. The companys that make this stuff are trying to make $ they say anything to do that. Auto needs more parameters to not just a tube and pressure sensor. It's not enough. CPAP AND BI-LEVEL RULE! AND VPAP when needed too! I'm out!

j n k said:

Rock,

I advocate getting a sleep study with a titration. It's the right thing to do, in my opinion.

I also advocate giving an auto-titrating machine to every patient. Not so that the machine can auto-titrate every night with it set wide open. But so the patient can use the machine in a restricted range and use the efficacy data to optimize therapy effectiveness and comfort.

A titration is a snapshot of one night. A very VALUABLE snapshot that every patient needs, in my opinion, but a one-night snap nonetheless. It is a good starting point. But it is just a starting point, especially for many patients whose needs fluctuate over time--overnight and over the months and years.

I agree that the algorithms in the auto machines are far from perfect and that they don't work quite as advertised just yet, meaning, set wide open 4-20 cm. Used that way, you are absolutely right that the patient will have a higher AHI than using straight CPAP or BPAP. But if the data is looked at and the machine's range is restricted a bit based on that information, an APAP can be a beautiful thing. And for some patients, having a slightly higher AHI but being compliant is better than being stuck at high pressures and the patient then giving up on therapy completely.

Please note that every APAP can be run as a straight machine too. So giving a patient an APAP doesn't force the patient to use it in auto mode all the time. But it gives the patient, or doc, the ability to check to see the numbers, since APAPs are all efficacy-data machines.

I will use myself as an example. I have lost 25 pounds in 10 months. But I don't have to go in for another PSG to see if my needs have changed. I was able to see my data and see that I could lower my pressure by about 2 cm and have my OSA fully treated without suffereing from the aerophagia I had been dealing with. Do you really think my doc would have cared enough about my aerophagia to order a new PSG, or that insurance would have paid for it? No. But giving me the APAP gave me the tools to deal with my problem to increase my comfort, improve my quality of life, and remain compliant. Otherwise, I would have been stuck at the prescribed pressures, which I no longer need.

A PSG titrates a patient for sleeping on his/her back. If I find a way to stay off my back, since my OSA has a positional component, my pressure needs are different. An auto can deal with that better than anything. Should a patient be required to sleep with the pressure needed to deal with REM in supine ALL NIGHT? That is unduly high pressure that may keep the patient from being compliant. And there is no need for that patient to deal with that.

The question is actually academic, since autos are here to stay. The only question is, do we force patients to run them wide open, 4-20, or do we teach patients how to self-titrate using the information their auto-titrating machine gives? Not every patient will understand how to do that, just as not every diabetic understands how to monitor their needs day to day either if they don't get the training they need and the support they need. So the answer is training and support. They will be the keys to future patient comfort and compliance.

For me, expecting the sleep doc to discern my pressure needs night to night, week to week, is like expecting a doc to exercise for me and plan all my meals. It's my life. I have to be the one who exercises, eats properly, and sleeps effectively. All I ask is for the tools to be able to do that and the guidance to find my way. Medicine is for the purpose of helping the patient, not getting in the patient's way. It helps the patient to get him/her a PSG. But it also helps the patient if he/she gets a full-data machine that has capabilities the patient may choose to use to be comfortable and compliant.

I fail to see how anyone who truly cares about patient comfort and compliance could argue against allowing patients to have the latest technology available to them, which the patient may choose to use or not to use.

Insurance doesn't care one way or the other, since APAPs have the same codes as stripped-down CPAPs. If the docs don't mind, and insurance doesn't mind, what possible reason could a tech have for objecting, other than, perhaps, job-security issues? ("Hey, I won't have a job if people don't have to come to the lab all the time to find out what pressures they need!")

Give the patient what the patient needs, give the patient options, train the patient, and it will all work out. Because it SHOULD be all about the patient. If it isn't, this industry is way out of whack and will go down under its own weight eventually.

jeff

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Permalink Reply by Judy on May 2, 2009 at 10:00am

Ah, Duane McDade, doctor's like yours are one of the problems in the sleep profession. IF they would LOOK at the data some of these xPAPs can produce and give it SOME credence and attention they just MIGHT - oh my gawd! - discover a reason for a problem their patient is encountering w/o having to make a therapy adjustment "by guess and by gosh" (regardless how educated the guess) or putting the patient thru another expensive titration study and thus speed up the patient's SUCCESSFUL acclimation time making for one heck of a whole lot happier patient.

In 30+ years of breeding and showing dogs one thing I learned was that the GOOD veterinarians were the ones who made use of the various lab tests, etc BUT didn't consider them perfect, rather they relied on a combination of symptoms, test results, their education and experience plus their instincts to arrive at a treatment recommendation. Two or three "normal" lab results that were BORDERLINE high or low "normal" combined w/the symptoms could often pin point the problem.

The xPAP manufacturers didn't spend all the time and money developing these fully data capable xPAPs just to satisfy the curiosity and whims of the end users. And at least a couple of these manufacturers are the same ones who developed and produced the very software your and other sleep labs use to conduct the PSGs. For just one instance Respironics' Alice PSG software has been a leader in the field for years now.

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Permalink Reply by sleepycarol on May 2, 2009 at 2:44pm

I asked why go with just a cpap when your AHI is consistently <1, and at times 0.

My reply to some of the comments:

I had a sleep study that entailed me getting approximately 2 hours of sleep. It was suppose to be a split study and for obvious reasons wasn't. In that two hours of sleep I had over 60 apneas, o2 levels dropped into the low 80's, with approximately 210 leg movements. I went into the lab early, arriving at around 7:30 p.m. I asked to be hooked up first as I go to bed early -- typically around 9:00 p.m. I typically toss and turn, enter very light sleep, wake, get up, and repeat the cycle. All this was confirmed on the sleep study.

During my titration, it wasn't much better. I do know the tech told me she "THOUGHT" she had me titrated correctly, but had not been able to totally get rid of the apneas.

The sleep doctor prescribed the apap with pressure of 8 to 12. My first DME gave me a straight cpap set at a pressure of 10. With it I felt worse than before treatment. When I checked with the doctor and another forum and discovered that cpaps and apaps were different I changed DME's and got the prescribed machine. I used the machine that way for approximately 8 or 9 months and then on my own changed my pressure to the 9 to 15. I know it has a made a difference in how I feel and I am satisfied with my therapy at this point.

Once school is out (9 more days!!!) I may try it in straight cpap mode again since you guys seem to think it is better, but I admit I am very skeptical.

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Permalink Reply by RockRpsgt on May 2, 2009 at 4:39pm

Carol, I would stay in auto mode. Especially if it is working. You might want to experiment in CPAP on say a straight 12 just to see for your self. You and your Doc know what's best for you. I just think that you might benefit better if your range was adjusted. 9-15 seems to be too wide of a range in my opinion. If your average is 10/11 maybe 10-12 would soot you better. I started this debate on several sites. I do agree with Duane that the parameters need to be a little less wide open. The arguements for positional therapy, and for patients that can't do a titration, have been overwelming. This post was to get different views on the issue, not to change anyones actual treatment.

sleepycarol said:

I asked why go with just a cpap when your AHI is consistently <1, and at times 0.

My reply to some of the comments:

I had a sleep study that entailed me getting approximately 2 hours of sleep. It was suppose to be a split study and for obvious reasons wasn't. In that two hours of sleep I had over 60 apneas, o2 levels dropped into the low 80's, with approximately 210 leg movements. I went into the lab early, arriving at around 7:30 p.m. I asked to be hooked up first as I go to bed early -- typically around 9:00 p.m. I typically toss and turn, enter very light sleep, wake, get up, and repeat the cycle. All this was confirmed on the sleep study.

During my titration, it wasn't much better. I do know the tech told me she "THOUGHT" she had me titrated correctly, but had not been able to totally get rid of the apneas.

The sleep doctor prescribed the apap with pressure of 8 to 12. My first DME gave me a straight cpap set at a pressure of 10. With it I felt worse than before treatment. When I checked with the doctor and another forum and discovered that cpaps and apaps were different I changed DME's and got the prescribed machine. I used the machine that way for approximately 8 or 9 months and then on my own changed my pressure to the 9 to 15. I know it has a made a difference in how I feel and I am satisfied with my therapy at this point.

Once school is out (9 more days!!!) I may try it in straight cpap mode again since you guys seem to think it is better, but I admit I am very skeptical.

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