CPAPtalk.com

Posted: **Wed Jan 14, 2009 6:10 pm**

Wow. I love flame wars. In fact, my only complaint about this forum is that everyone's too damn nice (although I love that sometimes too). But I hadn't been around long enough to see what happens when a preachy sleep professional shows up. Flame on!

Anyway, as a PAP newbie (three months under my belt), I just want to point out to Guest RPSGT/Sleep Lab Manager that this forum has been way more helpful to me than my sleep doctor or the DME. In my initial sleep study, I was diagnosed with moderate apnea and an AHI of 20. At the original setting of 7.0 cm, that was reduced to 10-12 AHI. I knew that was too high and that the machine wasn't doing as much as it could. With the help of people on the forum, I slowly adjusted up to 10.4 CM on a CPAP and the AHI came down to 5-7. Next, I switched to an APAP ... then an Activa mask ... then increased the humidity to deal with inflamed nares while minimizing discomfort from rainout ... and on and on. My AHI is now 3-5; AI is never above 0.5 (i.e., I'm now getting neither centrals or obstructives). I use the machine every night for the full 8 hours. I feel great and am sleeping deeply and comfortably. The median pressure on my ResMed Autoset is almost always 10.4 ... 3.4 cm above my original titration and exactly where I arrived by heeding the advice and guidance of the kind folks on this forum.

Now, I understand it is theoretically possible that a sleep doctor would have eventually helped me with all those things too. But that's not how it happened. And to make it happen, I would have had to pay many times more in copays and lost hours than I did by researching it myself and getting help through this community. Don't get me wrong. The doc is a nice guy. The techs are nice guys. But they are not nearly as accessible, or free, or interested in actually hearing me and helping me, as the people on this forum.

I don't feel particularly hostile toward sleep health specialists, but I just think that people in your profession would have a much higher chance of success if you took the time to a) understand why people come to a forum like this (hint: it's because you guys suck) and b) CONTRIBUTE. If your knowledge is really as "vast" as you say it is, toss it into the marketplace of ideas and trust that the best ideas will carry the day.

Posted: **Wed Jan 14, 2009 6:49 pm**

ziggytosh wrote: . . . everyone's too damn nice . . .

Sorry, zig--I AM working on that.

I apologize if my post was part of a flameout--it's just that sometimes I feel all jittery inside if I overhear mommy and daddy saying ugly things to each other.

Posted: **Wed Jan 14, 2009 6:50 pm**

Guest RPSGT/Sleep Lab Manager wrote:Too much pressure can cause cause central Apneas by eliminating the hypoxic drive, this can do alot more problems than just increasing your AHI...

That certainly sounds interesting! Can you explain how this happens, or link to a specific reference?

Thank you.

SAG

Posted: **Wed Jan 14, 2009 7:22 pm**

I am sure guest's reference to hypoxic drive theory was merely a mistyped misstatement made in the heat of the post.

Kinda like when Sam hinted he might go pro.

Where is -SWS? He can't just leave us all out here to flounder like this!

Posted: **Wed Jan 14, 2009 7:26 pm**

jnk wrote:Where is -SWS? He can't just leave us all out here to flounder like this!

Yeah maybe -SWS can get aunt weeza to help out and find me a math tutor.

Posted: **Wed Jan 14, 2009 9:51 pm**

Guest RPSGT/Sleep Lab Manager wrote:
Wulfman wrote:
Guest RPSGT/Sleep Lab Manager wrote: What you need to do is to see a ABSM approved sleep specialist, and to get a proper titration at an AASM accreditied sleep lab. Ensure that your aquiring tech and scoring tech are both Registered by the BRPT. Spend some time with the techs doing a proper mask fitting. I only use full face masks as a last resort, I believe that a nasal mask with a delux chin strap to support your chin and lower lip are a good sollution to train someone to become a nasal breather only.

Hope I helped out some.

Yep......you helped ME out......you just told me you don't know SHIT! Do you realize how far from reality all of that BS is?
Please... In detail, please tell me how what I said is "BS" or that I don't know what I am talking about? What I said is spot on.

Wulfman wrote:Sleep Medicine has become a money grab. Run 'em through and hope they make it. If the don't, order yet another sleep study and grab some more loot.
I agree with you 100% and it disgusts me. I have left 2 sleep labs for their unethical practices. I finally moved across the country to work with a center that was not-for-profit

Wulfman wrote:There ARE a few good ones and some of them even hang out on this forum to lend some of their expertise when necessary. (don't worry, I won't mention names)
fine... but what exactly does this statement have to do with the current situation, or your arguement with my suggestion?

Wulfman wrote:We hear this spiel every so often when someone like you finds this site on the Internet. You need to be talking to the people in your own industry and tell them to get their act together. If they WERE "properly" doing their jobs, there wouldn't be a need for these forums. What about the sleep doctors who prescribe the WRONG pressures?

Medicine is like any other profession. There are good doctors and facilities and bad doctors and facilities. Unfortunately the boom of sleep medicine was driven by facilities that are owned by greedy doctors and venture capitalists. However, that is an arguement that is neither here nor there... I am just trying to help out this patient, and to spread some facts. As for "sleep doctors who..." This is why I recomended an AASM accredited lab, and an ABSM boarded sleep physician.

Wulfman wrote:What about the patients who just can't get their therapy going because they were run through that "money mill" and sent on their way to give up therapy out of frustration?
For those patients, I suggest that they educate themselves and find a sleep lab that is not driven by the "money mill" as you so call it. Find a lab that is associated with a not-for-profit hospital, one that is AASM accredited. the AASM accreditation is not a profitable accreditation to have. It requires far more steps and a far higher standard than a typical laboratory. One that is profit based will not waste their time getting and following that AASM accreditation.

Wulfman wrote:Spread the word to others in your (money-grubbing) profession to come here and see how people actually get HELP with their therapy.

Den
Den, first, I would rather spread the word to the consumers what to look for in a good lab, because if patients only go to labs that are good, this way the bad labs that you are reffering to will go out of business.

I am sorry that your experiences are so poor. However I really am here to help. I am not getting paid for this, nor am I making any future profits by offering this advice. As you can tell I didn't mention my lab, or even my state. By recomending to this patient that they need a proper titration I am only motivated to get this patient the best treatment alone, not by greed or job security.

I also mentioned ways for him to find a sleep lab and physician that are not based on greed, because they disgust me as well.

As for the whole grouping me in with the other poorer quality, profit based laboratories

My Center offers free evaluations of sleep disorders and Free 1-on-1 consultations with patients with possible sleep disorders
My Center gives follow up calls to patients to assist them with their therapy (No Reimbursement)
My Center offers free mask fittings and trial masks (No Reimbursement)
My Center does NOT sell CPAP equipment or any other medical supplies
My Center sponsors an AWAKE support group for CPAP wearers (No Reimbursement)
My Center only hires RPSGT for technical positions (cost nearly 2x the rate of a normal sleep tech)
The list goes on and on and on why I and my center are not "money grabbing" as you so elegantly put it. I am here to help and to lend my vast expertise.

Just let me know how I can help.

I took your remarks, statements, comments, etc., as general statements about the forum as a whole and not just the person who started this thread......so....

There are several "problems" with your logic about seeing an ABSM approved sleep specialist and getting a proper titration at an AASM accredited sleep lab. For one thing, there aren't very many of them out there and the vast majority of us.....in our sleep-deprived, pre-diagnosed, pre-therapy condition get referred to a local sleep lab by our GPs/PCPs and in many cases, they have a vested interested in that local lab because they may also be part of the same clinic group. I did another look on the AASM site to see where any accredited sleep labs may be in this area......the nearest one is almost 200 miles.....one way. However, the local sleep lab where I had my study is a satellite clinic of one of those accredited labs and my sleep data was transmitted to them to review/scoring.....they then sent the study back to my local clinic and sleep doctor (pulmonologist). I was NOT impressed! (particularly with the pulmonologist who was running the satellite lab) And, they ALL got my pressure wrong (among other things). So, in reality, I WAS using the services of an accredited sleep lab......and you can take your "accreditation" recommendations and stick 'em.......

Patient education? That's what we try to do here......after they've been "thrown under the bus" by their doctors and DMEs. You have to consider (again) that in the sleep/oxygen-deprived state that we get to the point of our sleep studies, we aren't in the state of mind to check their credentials and accreditations. Unfortunately, in my opinion, the medical professionals take advantage of the patients in too many ways.

As far as APAPs go, I'll be the first one to agree that there are issues and complications with giving them to new users at the too-often-prescribed settings of 4 - 20 cm. However, according to many people who have posted here, that's exactly what Kaiser does to their potential sleep apnea patients. They give them an APAP for a week or two and then use that data to determine whether they have OSA and what their pressure should be. If you don't believe me, just do a search on "Kaiser" in the search line above and you'll get about 20 pages of posts discussing them.
I DO believe that since APAPs and CPAPs have the same insurance billing code, the patient/user should be able to get one because their insurance provider is going to shell out the same amount of money. Additionally, the APAPs can always be set to single-pressure CPAP mode and they're ALL data-capable. To be effective, APAPs need to be "properly" configured with the minimum pressure high enough to take care of as many apneas as possible. And.....not all APAPs are created equal.

We realize that these data-capable machines derive their data from "air flow". No, it's not necessarily on par with all the information that can be ascertained in a genuine sleep study with all the wires attached, but if used on a regular basis and by learning to evaluate the data based on the time we ARE asleep, it can still be a valuable tool to see how our therapy is working. After all, at least it's SOME data.......the people who have non-data-capable machines have to go by "how they feel". And, if they're NOT feeling the benefits of their therapy, they don't know why. It could be that their pressure is not adequate or that they're leaking their therapy air out their mouths.

I'm not trying to run you off. Feel free to contribute. I'd suggest you register as a member, if you're serious about it, but that's your choice. But, believe me when I tell you that most of the people who end up on the forums have been dealt a bad hand by the people who were supposed to be helping them with their therapy and failed miserably.

Den

Posted: **Wed Jan 14, 2009 11:51 pm**

Paul's PSG and titration were evaluated by someone who is board certified in sleep medicine and was listed as board certified at the time. The lab, I don't know about. The tech who did it, I would know even less about.

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

However, I can relate my own experience with PSG; I was never titrated in a lab setting but did my own under directions 4 years later by pulmonologist (not certified) using a straight CPAP and software. I went to what was a certified lab and my psg was evaluated by a certified sleep doctor. What a joke? I never could get the corrections on the report. I could never see this doc to ask him questions.

The room was not dark in any sense and lights from the nearby ER vehicles constantly shone into the room. It was fairly quiet but then I also was running my air cleaner on high.

The tech was a joke too. I don't know what alphabet soup he had for dinner that night but I was promised a scent free tech and he reeked of brut deodorant and my reaction to that was enough to alter the whole blasted report as I had to double one of my meds to even deal with that reaction.

The labs and their personnel need to be a lot more accommodating to those of us with special needs and those special needs do not need to be blown off. I was then given inadequate treatment for severe OSA for 4 years until I finally said, with new heart problems, am I really getting enough O2 at night? and of course the answer was no.

It wasn't until I started investigating online (yeah 4 years late - I believed that med school prof I had been seeing (no - not the sleep doc but pcp) - shouldn't have) what treatment I needed to treat this and what I needed to do to start. I found forums to start to get answers, and I finally got somewhere on this.

The current system fails many of us and as time goes on, more and more will be failed by it.

Posted: **Thu Jan 15, 2009 5:04 am**

Paul22 wrote:If I stop my mouth leak completely, the AHI readout on Encore Viewer goes up through the roof. The machine is a Respironics Bipap Auto Series M, set to the Bilevel (non-auto) mode, pressure 11/8. I am using a Nasal Aire II cannula (extra large). I can embed a picture in an email but have not been able to copy a screen into this server, so I will tabulate the readout for four days:

Date AHI Av. Leak

01-02 1.4 48
01-03 32.1 37
01-04 26.6 39
01-05 2.4 54

The first and last days are with a tape seal only (not a mouth complete seal): the other two days are with a tape and dental cream seal (complete mouth seal).

This pattern first presented itself a couple of weeks ago when I first got a complete seal—so I stopped trying to get a complete seal. It didn’t make any sense to me so I tried again--with the above results.

If I tape my mouth with paper tape only, I cannot get my lips to seal—and the tape is porous. So I build a thick pad of tape over my mouth which results in a usable leak rate. I discovered that if I use the sealing dental cream on my lips and some tape over my lips I can get a complete seal on mouth leaks for the night—but AHIs go through the roof. Also I have trouble going to sleep and feel like I never did get fully to sleep. Using the tape only, I have no trouble going to sleep and normally sleep soundly for 5 or 6 hours—with acceptable AHIs. I do not feel too badly the next day after a night when I sealed my mouth leaks completely. I think I remember DSM saying something about one machine giving him a better night’s sleep but feeling better the next day after using the other machine,

Centrals? Artifacts of the machine? Side effect of the dental cream? And what I really do not understand is why stopping the mouth leak completely prevents my going to sleep.

Any help, or telling me where I might find help, would be greatly appreciated.

Paul22

Posted: **Thu Jan 15, 2009 7:38 am**

So, if I understand what is being discussed here (and I probably don't, but that's OK), is it that one of the possibilities we are looking at in this instance is that maybe the tape/glue-stuff could be increasing anxiety, which in turn could be affecting architecture and causing arousals, which might then show up as an increase in AHI? Or am I even more confused than I think I am?

Posted: **Thu Jan 15, 2009 12:35 pm**

jnk wrote:So, if I understand what is being discussed here (and I probably don't, but that's OK), is it that one of the possibilities we are looking at in this instance is that maybe the tape/glue-stuff could be increasing anxiety, which in turn could be affecting architecture and causing arousals, which might then show up as an increase in AHI? Or am I even more confused than I think I am?

Absolutely the glue/tape can increase anxiety and apneas. I was dealing with an initial high leak rate This was partially solved by switching from nasal pillows to direct seal on my CL2.

I'm claustrophobic, and I hated the idea of taping. (I hated the idea of a mask, too, but the CL2 turned out to work for me.) But so many people swear by tape and glue here that I decided to give it a shot. It was the second most miserable night of my CPAP experience -- the first being the first night when all the alarms kept going off. I tossed and turned all night, only to find the next morning that my AHI had quadrupled using the tape.

I couldn't face that again. I also couldn't handle the idea of a chin strap. But I knew from the "glue mouth" effect that there was some kind of mouth-breathing going on.

I was titrated at 10 and 14, but I know there was a lot of mouth leak going on because I woke up multiple times during the titration with a dry, raw tongue and throat. My initial settings were EPAP 10, MinIPAP 10, MaxIPAP 14. If I kept my mouth closed, I had to struggle to swallow my own saliva. If I didn't keep my mouth closed, I drooled into the pillow all night. (I never did this pre-CPAP.)

So I put a clock where I could see it, regardless of position. I took note of the times I woke with glue mouth. Next morning I compared the stats with the times I remembered.

My leak rates were shooting up AFTER the apneas. Knowing that I have complex apnea, and thus am prone to centrals, I concluded that too high an EPAP was actually causing the apneas it was supposed to prevent.

So (just to make our guest feel a little better about us crazies), I called the RT and discussed the issue with her. She agreed with my conclusions, and obtained a modified prescription from the doc. Then she walked me through changing my settings myself.

My settings are now EPAP 6, MinIPAP 10, MaxIPAP 14.

Leak rates dropped significantly, but still weren't acceptable. Obviously, my chin was dropping open. That's when I designed my "brandy keg chin support". Leak rates dropped into the correct range for my mask and pressures, and they stay there. AHI is typically 2 or less, and I think I've had maybe 3 apneas in all that time -- my main issue is hypopneas. I don't have to go through mega-tape-athon, I don't have to go through a million gyrations to get re-sealed if I do wake up and need a sip of water, and I don't die of heat prostration from all the neoprene strapping around my head.

But if not for the Forum, I wouldn't have known to call the sleep center before my titration and ask to come in and try on masks. The center mask tech was very good, and spent around three hours with me, trying on different masks, and letting me try them lying down and under pressure. As a consequence, when I had to put the thing on for the titration, I had something which was, while unfamiliar, at least not miserably uncomfortable.

If not for this Forum, I wouldn't have known HOW to monitor my therapy, and I wouldn't have had near the success I've had if not for what I read here.

So in my case, the Forum prevented my becoming a CPAP failure.

<g> I'd say the advice around here is pretty good.

Posted: **Thu Jan 15, 2009 12:47 pm**

Kiralynx wrote: Obviously, my chin was dropping open. That's when I designed my "brandy keg chin support". Leak rates dropped into the correct range for my mask and pressures, and they stay there. AHI is typically 2 or less,

Wondering if something like this wouldn't help Paul?

Posted: **Thu Jan 15, 2009 12:52 pm**

GumbyCT wrote:
Kiralynx wrote: Obviously, my chin was dropping open. That's when I designed my "brandy keg chin support". Leak rates dropped into the correct range for my mask and pressures, and they stay there. AHI is typically 2 or less,
Wondering if something like this wouldn't help Paul?

That's one reason I mentioned it. I'm trying to get some directions for making one sketched up, but I don't describe it all that well.

What I'm actually using is a black one of these:

http://www.hydrofit.com/home/hyf/page_3 ... html?stpl=

I had some I used for my water therapy for added resistance when water-walking, and which I'd retired. I covered it with some fleece to match my Padacheek CL2 headpiece which I got from Karen before I went to buy something special like this and cut it:

http://www.dmesupplygroup.com/cando-foa ... -2103.html

I also made a strap out of the same fleece with velcro on either end. The strap goes through the center of the roll and around my neck.

Posted: **Fri Jan 16, 2009 5:49 am**

jnk wrote:So, if I understand what is being discussed here... (and I probably don't, but that's OK), is it that one of the possibilities we are looking at in this instance is that maybe the tape/glue-stuff could be increasing anxiety, which in turn could be affecting architecture and causing arousals, which might then show up as an increase in AHI?

Well, IMHO what may be perhaps there's a chance it's possible that YMMV it's only a guess in my opinion I think that collectively

SAG wrote:They are caused by a conscious breathing pattern that is unnatural, pressure intolerance, a little compensation for wake hyperventilation, perhaps some sleep-onset central phenomenon and maybe a little CompSAS. In other words, all those events are a heap o' wake-generated garbage.

As Thomas Paine would say, "If Paul thinks he's awake, then he's awake." Of course, given the prevalence of "sleep state misperception" (a lot of people cannot accurately estimate how much they actually sleep), that also explains why Thomas Paine was an author/patriot and not an "ABSM-certified sleep physician".

ziggytosh wrote:If your knowledge is really as "vast" as you say it is, toss it into the marketplace of ideas and trust that the best ideas will carry the day.

He/she won't be back. They undoubtedly took their own advice in re:

Guest RPSGT/Sleep Lab Manager wrote:Too much pressure can cause cause central Apneas by eliminating the hypoxic drive, this can do alot more problems than just increasing your AHI, just read through respiratory journals for "elimination of hypoxic drive" to see

and realized that most of the concept of "the elimination of hypoxic drive" doesn't even exist, and certainly cannot be applied to pressure therapy. Frankly, I would question if this person even has the credentials they claim to have.

ziggytosh wrote:I don't feel particularly hostile toward sleep health specialists, but I just think that people in your profession would have a much higher chance of success if you took the time to a) understand why people come to a forum like this (hint: it's because you guys suck)

Can you be a little more specific as to which "you guys" you are referring to?

SAG

Posted: **Fri Jan 16, 2009 12:29 pm**

Guest RPSGT/Sleep Lab Manager wrote:...........
second, the AHI derived from the PAP machines is only an estimate, and should not be used to titrate with. There are variables in the mix that are not accounted for. .........

Can you specify the variables?

I won't rehash the stories but three studies/two sleep labs could not get my pressure right. I self-titrated using only fixed pressure over a two week period in my home. I am convinced I would be pushing up daisies today if I had followed either doctor's instructions.

I agree that an auto is not a good way to titrate. Use one fixed pressure per night and make small tweaks until you find an optimal AHI. I have no tendency to centrals and besides I believe the Respironics machine would record them with the obstructives in the apnea count. If I ever see the apneas shoot up and they do not respond to higher pressure I will get back to the sleep lab.

If you want to hang around here (I think you have a lot to offer even if I disagree with some of your conclusions) then you need to register. We tend not to trust Guests. Registered members tend build a track record and credibility (or lack of credibility in some cases). Guests tend to come and go and comment willy nilly.

Regards,

Posted: **Sat Jan 17, 2009 4:45 am**

rooster wrote:
Guest RPSGT/Sleep Lab Manager wrote:...........
second, the AHI derived from the PAP machines is only an estimate, and should not be used to titrate with. There are variables in the mix that are not accounted for. .........
Can you specify the variables?

Body position, sleep stage (or for that matter, even if you're sleeping or not), and differentiating central component (except for machines with FOT or ballistocardiographic-sensing ability immediately come to mind (although if you dissect the single, small-scale study for GK420E, it doesn't seem to be all that hot).

Guest RPSGT/Sleep Lab Manager wrote:Auto titrating machines can easily be fooled by such things as leaks

I disagree with that generalization, machine performance can be quite accurate even in the face of significant leaks (you throw out out your data, then I'll throw out mine).

Guest RPSGT/Sleep Lab Manager wrote:patient holding his breath while awake

And what would be the point of doing that?

Guest RPSGT/Sleep Lab Manager wrote:central apneas and the like

I'll give you that one, but most manufacturers have some sort of safety valve. How effective the safety valve is has been discussed.

Guest RPSGT/Sleep Lab Manager wrote:In fact when bored during the night techs used to play a game to see how high they could fool the machines into titrating ourselves. My friend holds the record for my lab at the time at 23 sonometers before he had to take it off as he was getting light headed.

Yesirree, that sure gives me confidence. I hope you're not near the dental clinic and have access to the nitrous on a night when you're really, REALLY bored.

But just for laughs, what machine was that and what was the maneuver?

Guest RPSGT/Sleep Lab Manager wrote:They are also a re-active system, not a pro-active approach think of it as getting punched in the face then stepping back vs stepping back before you get punched.

I would disagree with that generalization as well, technology that attacks snores and flow limitations would be quite "pro-active".

And don't forget about the "Too much pressure can cause cause central Apneas by eliminating the hypoxic drive" thing, I really am dying to hear that explanation.

General Assessment of Drive-By Poster: Not a poster, an imposter

SAG

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