For the new cpap user: Great post by alnhwrd

Insomniyak · Post by **Insomniyak** » Mon Jul 28, 2008 9:22 am

guess this person didn't know that if you post as a guest after initially having a user name, everyone knows that name, LOL. What a hypocrit. I'm just gonna lost my 30# so my OSA will be cured.

-SWS · Post by **-SWS** » Mon Jul 28, 2008 9:36 am

Alright. Debate is one useful tool by which we can analytically examine either a two-sided or multi-faceted issue. When we analytically compare contrasting ideas with rationality rather than emotion, we hope to arrive at sound conclusions.

Mark0680 asked for someone to present the other side of the issue or debate that is up for consideration. And I think myapapismadhot merely attempted to help Mark0680 and others here analytically explore the other side of that issue.

To debate any or all sides of an issue toward exploring its merits does not mean that we are hypocritical for entertaining reason on all sides of the issue.

GumbyCT wrote:
-SWS wrote:A well considered post by alnhwrd. Thank you very much. And thanks for posting that, ozij. I didn't want to comment in the other thread because it wasn't a two-way rational discussion: I saw only rage and condescension on the original poster's side of the debate. Unfortunately I could not manage to find any healing intent or care for other people in that counterproductive string of anonymous posts.
... Rhetorically - would you like to be treated by someone like Guest?

Your rhetorical point is well taken in my book, GumbyCT. When any health care worker literally repels patients with poor bedside manners, the single, central-most objective of medicine is literally and inadvertently subverted.

GumbyCT wrote:Those who know me know I actually have two Great Sleep Docs I consult with - finally.

.

DreamStalker · Post by **DreamStalker** » Mon Jul 28, 2008 9:41 am

You mean physicians are like hiring consultants?

jnk · Post by **jnk** » Mon Jul 28, 2008 9:50 am

My weird take on self-titrating, based on my situation . . .

If self-titrating was such a dangerous thing to do, it seems odd that so many doctors are willing to allow their patients to use auto machines, which titrate different pressures throughout the night if the machines are set up in the defaut wide-open way that the sellers, as I understand it, recommend. Why would letting a machine decide be a safer thing to do than letting the user figure out what is working for him/her?

One sleep tech, bless his honest soul, told me that the auto machines make him worry about his job security, since it makes the prescribed pressure numbers less crucial. I assured him that I think good sleep techs will always be valuable. Sleep techs know a lot more about the machines and about how to read data, I think, than most doctors, who are thinking on a different level much of the time.

I don't think you need an auto machine to self-titrate. A human being reading data on any data-capable can do that for himself better than a machine can decide, I'm sure. I am only using my situation as an example. But there are people out there who don't have what it takes, or the nerve, to interpret their data and make adjustments.

I'm with Insomnyak. I like keeping my doc in the loop in all my decisions that could affect my sleep, since the doc doesn't seem to mind and always has good suggestions and observations.

My heart goes out to those dealing with less-than-helpful sleep docs.

jnk

Guest · Post by **Guest** » Mon Jul 28, 2008 9:56 am

DreamStalker wrote:You mean physicians are like hiring consultants?

or....
consulting:
If you're not a part of the solution, but there's good money to be made in prolonging the problem.

ozij · Post by **ozij** » Mon Jul 28, 2008 10:33 am

If self-titrating was such a dangerous thing to do, it seems odd that so many doctors are willing to allow their patients to use auto machines, which titrate different pressures throughout the night if the machines are set up in the defaut wide-open way that the sellers, as I understand it, recommend. Why would letting a machine decide be a safer thing to do than letting the user figure out what is working for him/her?

The assumption here is that to err is human, but auto titrating machines don't err. That's the assumtpion - but of course they do. Some of us have had the machines roaring away unnecessarily because they were driven up by snores, or because they started out too low.

Another problem with the comparison is that the whole point about a self adjusting machine is that it does it all night long - whereas a human being sets it up, goes to sleep, and - here's the crux of the argument:

Will wake up, or sleep miserably if the setup is wrong (say the "set it up yourself gang")

Or: do himself / herself grievous bodily harm (say the "ohmigosh don't you dare" gang).

I assume the doctors that send you off with a 4-20 range read the papers that say APAPs are as good as a PSG at discovering the right pressure. But that doesn't mean APAP at 4-20 are good for restful nights, and therapy. It's no coincidence that they are termed "auto titrating" - I have no doubt in the beginnig their major aim was to make sleep lab work easier.

It's the rapid development in computing power, both at home and in the machines that makes our demand for "full data capable machines" reasonable, and the insistence that "this only for the pros" slightly ridiculous.

It'll take some time, but it will change.
Doctors now work with patients who take their own BP (white coat syndrome, anyone?)
Patients who use sophisticated computerized programable insuline pumps to handle their blood sugar.
Women who take at home pregnancy test
etc.
The physician's knowledge is needed for differential diagnosis (is the exhaustion caused by lack of sleep? osa? complex sdb? infectious mononucleosis? anemia? malfuctioning lungs? a cancer growing in your colon?). However, unless its handling pills, once the diagnosis is done physicians rarely concern themselves with ongoing, long term therapy.

Once your broken leg has been set by the orthopedist, you bad back diagnosed, the tumor taken out of your brain - therapy is done by the phyisiotherapist, speach therapist, and... oh yes, respiratory therapist.... and if you're considered obese they'll send you to a dietician. Your caridiologist won't be the one doing your carido rehab. either.

O.

jnk · Post by **jnk** » Mon Jul 28, 2008 11:03 am

Thanks, ozij. The way you worded that helps me a great deal.

Wulfman · Post by **Wulfman** » Mon Jul 28, 2008 11:51 am

-SWS wrote:When any health care worker literally repels patients with poor bedside manners, the single, central-most objective of medicine is literally and inadvertently subverted.

This describes my sleep doctor. It wasn't just me, either......his reputation preceded him and I was beginning to think that his "idol" was Don Rickles.

My rationale for re-setting my pressure from 18 (felt like way too much) to 10 cm. (much better) was that even at 10, I was going to get more AIR than I had been getting for the many preceding years. Also, due to the time frame between the referral to the sleep lab by my GP, and finally getting my prescription, approximately three months had passed. And, if my (severe) sleep apnea was so dangerous to my health, why didn't they hand me a (loaner) CPAP to use as I left the sleep study? No, they're not that concerned about MY health......I'M the one who has to make that determination. They can't MAKE me come in to a doctor's appointment.....nor can they MAKE me take any medications or use a CPAP pressure which was incorrect.

And, yes, they're hired "consultants"......they work for US.....we're paying them. If they don't do their job, we can fire them and find others, if need be.

Den

jnk · Post by **jnk** » Mon Jul 28, 2008 12:20 pm

due to the time frame between the referral to the sleep lab by my GP, and finally getting my prescription, approximately three months had passed. And, if my (severe) sleep apnea was so dangerous to my health, why didn't they hand me a (loaner) CPAP to use as I left the sleep study?

I had the exact same question! It drove me crazy knowing I had the problem and no machine!

My off-topic (why should I change now?) suggestion to anyone receiving an appointment for a sleep lab overnighter is to get a hold of the scheduler right away and volunteer to fill in for any cancellations or reschedules, and let them know how little notice you need. It is doing the scheduler a favor, and it may get you "bumped up to first class" right away.

mark0680 · Post by **mark0680** » Tue Jul 29, 2008 12:26 am

-SWS wrote: Mark0680 asked for someone to present the other side of the issue or debate that is up for consideration. And I think myapapismadhot merely attempted to help Mark0680 and others here analytically explore the other side of that issue.

Yes, my point was here we have people that are so against adjusting air pressure on their own, but there is no evidence that backs up that side of the debate. No one has yet to say that self-adjusting air pressure could cause xyz. Or if you are not careful you will suffer these side affects.

What is there to be so afraid of changing the pressure yourself? Is it simply because my doctor didn't do it and we shouldn't do anything outside of our doctor's care because it might be dangerous for us? How is it dangerous? What are the consequences of adjusting air pressure one or two points either direction?

Will someone please show me something that says something bad will happen if we adjust our air pressure ourselves?

I am trying to be objective, but so far the self-adjusting side is winning because it seems much more logical than the other side.

ozij · Post by **ozij** » Tue Jul 29, 2008 2:13 am

Will someone please show me something that says something bad will happen if we adjust our air pressure ourselves?

Yes, please.
Something reilable, somenting valid, something that is not anecdotal evidence, something that appeared in a peer reviewed journal.

O.

mark0680 · Post by **mark0680** » Tue Jul 29, 2008 5:47 am

I might be geeking it up here a bit, but here is a fascinating article from the American Journal of Respiratory and Critical Care Medicine:

http://ajrccm.atsjournals.org/cgi/conte ... type=HWCIT

In the Abstract there is a quote that summarizes the study of the research they did with self-titration:

Home self-titration of CPAP is as effective as in-laboratory manual titration in the management of patients with OSA.

This article is well worth reading as it has sold me on the whole debate of adjusting air pressure ourselves.

cpaped · Post by **cpaped** » Tue Jul 29, 2008 5:56 am

thanks for sharing this post with us OZJI, I saw the original post but couldn´t follow nor reply to it because that was irrational, no point on arguing with people that "barfs" their arguments on you.

I totally agree with the post, here where I live a single visit to a good sleep specialist can cost about $150-200 dollars, and a sleep study in a reference lab would cost you $300-400 dollars. Maybe for that might sound like a real deal for U.S standards, but for our standards that's pretty expensive. So no way I'm getting back to a physician every week or so just to adjust the pressure on my cpap.

Actually, I didn't even get a cpap yet, I'm in the very beggining of understanding how this therapy works, but I might say I had my mind set on surgery against my own physician's opinion, and this site helped me understand all the risks and benefits involved on both therapies, so the "barfing dog" should remember that this site is way beyond people adjusting their pressure setting on their cpaps. This site is about people sharing their difficulties and personal experiences and helping each other, not only to tweak their pressure settings, but also with encouraging words, or even advices on how to fix leaking problems, very simple techniques on how to better adjust to their masks, humidifiers, and even how to deal with the "sex & the cpap" issues.

Ignorance might be a blessing somethings, but ignorant people are just simple, plain annoying.

regards,
Fabio.

-SWS · Post by **-SWS** » Tue Jul 29, 2008 8:21 am

ozij wrote:
Will someone please show me something that says something bad will happen if we adjust our air pressure ourselves?
Yes, please.
Something reilable, somenting valid, something that is not anecdotal evidence, something that appeared in a peer reviewed journal.

O.

Picky, picky, picky! Aren't we?

I haven't seen that type of defense presented in all the years I've been reading message board and medical literature.

I have seen reasonable comments along the lines of: 1) the medical conditions that can be missed without a PSG diagnostic, and 2) what can go wrong when the pressures are incorrect.

Point one above is a valid argument for attaining a good DX in the sleep lab IMO. But it is not an argument against carefully adjusting one's own pressure.

And argument two above is purely ironic. Because patients so often come away from in-lab titrations with the wrong pressure---which drives them to the message boards for methods to achieve correct pressure (or worse leads them to abandon problematic treatment altogether).

ozij · Post by **ozij** » Tue Jul 29, 2008 8:26 am

-SWS wrote:
ozij wrote:
Will someone please show me something that says something bad will happen if we adjust our air pressure ourselves?
Yes, please.
Something reilable, somenting valid, something that is not anecdotal evidence, something that appeared in a peer reviewed journal.

O.
Picky, picky, picky! Aren't we?

.

Always was....

O.

Mask