For the new cpap user: Great post by alnhwrd

ozij · Post by **ozij** » Sun Jul 27, 2008 6:08 am

[quote="alnhwrd"] <snip> for the new cpap user who might be here just starting on his journey.

No one, not a Dr., sleep tech, or DME employee will care as much as I do about my health. Therefore, I am the one to decide the best course of action in regards to my health. I, and almost everyone on this site, have the intelligence and determination to make valid informed choices, knowing full well the risks, (which are minimal, I have yet to read an obituary that says "Poor Bob, he died because his cpap pressure was set too high"!) and benefits of adjusting our own pressure. Successful Cpap treatment is an art as much as a science. Its not like treating an infection where you take a pill three times a day for two weeks and you are cured. Its a work in progress for many, with lots of variables that each individual must adjust to maximize the benefit of his or her treatment.

IMHO, it is far more dangerous to drive than change ones pressure, but we do it everyday. I drive 30 miles to work. My car is going 70 MPH one way and I am about 10 feet away from a couple of hundred cars going 70 MPH the other direction. A few minutes inattention or malice on someone's part would result in chaos and death for dozens. And yet, knowing all this, the state lets me and everyone else out on the road drive, and we make the informed decision to do so and accept the inherent risk. If I can be trusted to operate a two ton vehicle at 70 mph, why can't I be trusted to change my own cpap pressures? Your argument is akin to someone going to a travel site and demanding it be taken down because people are encouraging others to drive their cars, putting themselves and others at risk from death by a motor vehicle accident. The same argument can be made for making house repairs, skiing, hunting, boating, or just leaving the house. All of these activities have some risks, most far more than changing pressure on a cpap machine, and yet intelligent people make informed potienal advantage versus possible risk based decisions to participate in them every single day.

Consider how unwieldy and ineffective it would be to actually do as you propose. One would need a weekly visit from a nurse/Doc/sleep tech to check data and make adjustments for at least the first three to six months, if not longer, and then two to four visits a year for the rest of their life just to maintain. The sleep medicine industry is not capable of supporting this level of care, not to mention the cost to the insurance system and consumer. There are not enough health care professionals to get the job that you, and others like you who insist their way is the only way to do things, want them done.

No one is obligated or coerced into doing anything on this board. Anyone who wants to is completely free to do just as you say and make appointment after appointment with their Doc until they get it just right. The reason most people don't is because that way doesn't work. Making one's own adjustments at home does. I have read countless times on this board about people who have adjusted their pressure and suddenly things are working for them. I have also read many posts from people who kept at their prescribed settings for months getting little or no benefit. Which is better? I think the former is.

In my own case, I increased my pressure a bit, my numbers improved, I increased them a bit more, they were still ok, I increased them more and they got worse so I knew where my ceiling was and I have kept my pressure below that ever since. I and others will continue to safely experiment with our settings, looking for that perfect mix of pressure, EPR, mask and humidity, and if that makes you crazy or angry, that is no one's fault but your own. CPAP therapy is the gold standard of treatment for simple obstuctive sleep apnea, and self management of care is, in my humble opinion and the opinion of many others far wiser and smarter than I, the gold standard of CPAP therapy. I am confident that time will prove this to be the case.

A final note to the original poster. This site is, in the host's own words, dedicated to the support and encouragement of CPAP users and respectful discussion of issues relating to Cpap use. It is not a place to spew venom and use foul language. If you feel the need to do so, PM me and get it all off your chest, don't put it on a public site.

jsmythe · Post by **jsmythe** » Sun Jul 27, 2008 7:03 am

Thanks Ozij, perfectly well said by alnhwrd, Perfect....

-SWS · Post by **-SWS** » Sun Jul 27, 2008 7:50 am

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.

However, the two sides of that debate have existed for all the years I have been reading the apnea message boards. The underlying issue that fosters that debate is, in my opinion, a genuine social issue and personal health-care dilemma.

In an ideal setting the medical profession would universally render rampant anecdotal treatment failure, neglect, and confusion moot. In an ideal setting we would not see so many patients scurrying to the message boards to figure out why their health care professionals abandoned them with ineffective treatment---or denied that sleep study in the first place.

So that any health professional should insist with rage and condescension that dilemma-struck patients must persist with a very dysfunctional system that failed them in the first place is nothing short of life-threatening social dogma in my opinion.

I very strongly prefer to see all patients at least try to find competent and caring health professionals. But any "healer" who refuses to recognize that a massive problem exists related to SDB screening and treatment methods, does not heed the underlying spirit of the Hippocratic Oath. Not to bash the medical system. For that is but a dogmatic mentality on the other side of the debate. And I happen to think that most medical professionals are caring and competent humans who happen to love and breathe as the rest of humanity does. It is the premature state of sleep medicine itself that suffers organizational and social woes on both sides of the proverbial coin. Many of us who have researched this issue in depth perfectly understand that key health care policy makers earnestly struggle for large-scale solutions to the most salient issues burdening this young branch of medicine.

Rhetorically: What good is any branch of medicine when those who practice it force non-healing methods?

rested gal · Post by **rested gal** » Sun Jul 27, 2008 9:30 am

alnhwrd and -SWS... beautifully expressed rational thinking.. both of you. Thank you. And thank you, ozij for giving alnhwrd's post a well deserved prominent place.

I'd even thank the Guest who started the firestorm in the original thread.
viewtopic.php?t=33457

Thanks for being a catalyst to prompt alnhwrd and -SWS to post what they did.

Some interesting reading for you, "that" Guest...written by medical professionals, no less:

"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?"
Link to a study that concluded, "yes."
http://ajrccm.atsjournals.org/cgi/reprint/167/5/716

"Not Every Patient Needs to Go to the Sleep Lab" Link to a Powerpoint presentation by Dr. Barbara Phillips at a meeting of the American Lung Association of the Central Coast - November 2004. Dr. Phillips is board certified in pulmonology and sleep medicine.
http://www.alaccoast.org/pdf/Phillips_0830.pdf

GumbyCT · Post by **GumbyCT** » Sun Jul 27, 2008 9:56 am

-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.

Agreeing wholeheartedly with all above - YES. Great job from ALL.

Rhetorically - would you like to be treated by someone like Guest?

Those who know me know I actually have two Great Sleep Docs I consult with - finally. And if you do know me - you prob know the docs by name even

I do bring printouts from Encore so they can see & believe the numbers. Tho as one said - if the software was that good we wouldn't need to do PSG's. I do think if PSG's weren't sooo costly more could do it. Other methods are just a bit slower plus would ONLY find breathing disorders.

When I complained to her about the DME lying outright - she leaned over, smiled & whispered "They ALL lie".

Bless her heart.

Guess that's a reality we have to deal with even if we don't accept it.

GumbyCT - who is happy he found this baaad site.

tansey · Post by **tansey** » Sun Jul 27, 2008 6:24 pm

this is why I am here and plan to stay, thanks for the eloquent truths.

yorkiemum01 · Post by **yorkiemum01** » Sun Jul 27, 2008 6:36 pm

PURELY eloquent OZJI.........loved the post

Babette · Post by **Babette** » Sun Jul 27, 2008 6:50 pm

Did anyone add this to the Red Balloon (FAQ) yet? Very worthwhile reading.

I can do that if it hasn't been done.

Cheers,
Babs

roster · Post by **roster** » Sun Jul 27, 2008 6:56 pm

Wow, the internet is changing the whole world, including medicine, so quickly. Individuals communicating widely, freely and inexpensively. Truly a key moment in the history of mankind.

Thank you Johnny Goodman (and Al Gore).

ozij · Post by **ozij** » Sun Jul 27, 2008 9:14 pm

The eloquence in that post isn't mine - it's all alnhwrd's.
O.

mark0680 · Post by **mark0680** » Mon Jul 28, 2008 1:33 am

Question for everyone. I have been reading up on this debate here in the forums and have yet to come across any evidence why one should not take the therapy into their own hands.

Is there legal evidence or any cases to show why this is a bad idea, and why one should not be able to adjust their own pressure? So far all I have heard are few people ranting about how unethical it is, yet they do not back up their claims with evidence.

It seems a logical solution to many people's frustrations. There seem to be many more success stories taking therapy into our own hands than stories or evidence against it.

If you are against this can you please show me with some evidence of why this is a bad idea?

Guest · Post by **Guest** » Mon Jul 28, 2008 8:28 am

It's nice that people here think they know pressures better than a sleep specialist. Somehow, I think that a physician would know more. That said, for someone who is well informed and understands the risks and pays close attention to the pressure changes, it should be ok. You should still consult your sleep physician and be sure that the data from your machine is reviewed. Your sleep physician also pays attention to your overall health and any other changes in your body.

In terms of legal evidence, I'm not sure what you mean. I think you are talking about clinical evidence. I haven't been able to find any studies that mention the long term success rates of those who take control of their treatment vs. having a physician supply it. Keep in mind that people are great about talking about their own successful stories, but are not good at talking about their personal failures. Anecdotal evidence isn't very reliable.

I think that in many cases, people try to avoid physicians because they get news that they don't like to hear such as you have high blood pressure, high cholesterol, high blood sugar and are overweight because you eat poorly/too much and can't pry yourself off of the couch.

The ultimate cure for sleep apnea in most cases is weight loss. All the best to you if you're 150 lbs, fit and still 100% need a CPAP. If you're 150 lbs overweight, what you should be focusing on is dropping the extra pounds and not micro-managing your pressures.

ozij · Post by **ozij** » Mon Jul 28, 2008 8:57 am

Another "beware post" and still not a shred of researched evidence that people cannot manage their own pressure. Note how the word "long term" is inserted in there, and "micro managing."

And the usual, weightloss cliches.

The simple fact is that we seem to run into doctors who trust the machines data, and doctors who don't. Doctor's who think the setting given by the PSG is sacrosanct, and doctor's who know a sleep study is such a strange situation that the the pressure coming form it may be wayyyy off.

People here think they know their body's resopnse better than the best doctor does. Some of them also know they've studied the machines in ways the doctor has not. They also hava had to sleep - night in night out - with what the doctor prescribed.

I haven't been able to find any studies that mention the long term success rates of those who take control of their treatment vs. having a physician supply it. Keep in mind that people are great about talking about their own successful stories, but are not good at talking about their personal failures. Anecdotal evidence isn't very reliable.

Last time I checked, all the doctors I'd ever run into were people too. Some of them are better than others at admitting mistakes.

I think that in many cases, people try to avoid physicians

You know, that's funny, because the problem for most of us was being avoided by our physicians - who would not listen, would not explain, would not look at the data, sent us to speak to the nurse, and relegated us to the care of RTs or DMEs who knew nothing of the machines they gave us. And that's why we got here.

The ultimate cure for sleep apnea in most cases is weight loss.

Sure. Have you found any research showing long term success in weighloss - unless it was achieved through surgery? And I mean long term, academic research, not anectodal or commercial?.

The ultimate treatment for sleep apnea is a properly set up machine, with a comfortable mask.
O.

Insomniyak · Post by **Insomniyak** » Mon Jul 28, 2008 9:00 am

There are alot more factors than just weight. Weight can help but is not a cure-all. Has more to do with musculature of the throat, physical build, etc. Many athletes who are built esp. in their upper bodies have OSA, so you need to read up on that before making a blanket statement abiout weight. I am sure in my case, losing the 30# I need to would lower my pressure of 12, but being that I am broad shouldered, built, active, and have an 18" collar, it is probably not going to eliminate the need.

I am probably one of a few who like yourself would not change the pressure without letting my doc see the data. That I do agree with.

ozij · Post by **ozij** » Mon Jul 28, 2008 9:14 am

Insomniyak wrote:I am probably one of a few who like yourself would not change the pressure without letting my doc see the data. That I do agree with.

You're probably not like that person in any way.

myapapismadhot wrote:Is there a way that I can tell if my A-PAP is set to enough pressure? Right now it's set to go between 5 and 10. I didn't go back for the second sleep test as I haven't really had the time. The 90% pressure reading is 7.8. My APN-HYP ratio is just under 5. Can anyone tell me if I should have this changed? THanks.

Mask