Do anyof you ever read "official" OSA literature?

EricinNC wrote: You sound kinda paranoid to be honest. If I were a newbie to OSA and CPAP, Id rather rely upon my sleep doctor, a good brick and mortar sleep apnea oriented RT if I had access to one and credible source OFFICIAL websites...than this forum.

Eric

Well just check this out The Problem With Medicine: We Don't Know If Most of It Works

. A panel of experts convened in 2007 by the prestigious Institute of Medicine estimated that “well below half” of the procedures doctors perform and the decisions they make about surgeries, drugs, and tests have been adequately investigated and shown to be effective. The rest are based on a combination of guesswork, theory, and tradition, with a strong dose of marketing by drug and device companies...

And Eric,

Part of the reason all the official sites stress all the non-CPAP ways to treat OSA (while at the same time acknowledging CPAP is the "gold standard" of treatment) is that these are relatively cheap (except for surgery) things to try that might indeed help some patients with very mild apnea who are also overweight. And since some 50 to 60 percent of Americans are overweight these days, there are plenty of folks who are both overweight and complain of excessive daytime sleepiness and fatigue. [What do these sites recommend to patients who are NOT overweight by the way? CPAP]

And also the authors of these sites know that GPs who deal with patients every day see the same instantaneous reaction 99.9% of the population when told the may have apnea. The typical conversation all too often goes something like this:

• Patient describes daytime symptoms of excessive sleepiness, fatigue, difficulty with concentration, and the fact that spouse says they snore.
  
  Doc: "You should get a sleep test. You might have sleep apnea."
  
  Patient: "No way will I ever sleep with a mask on my nose every night. So no I don't want to d a sleep test right now. Isn't there something else you can test for that might explain my daytime sleepiness?"
  
  Doc: "Well we've run the standard thyroid tests and vitamin D tests and they're normal. Maybe you only have mild sleep apnea. In that case maybe losing some weight and getting in shape might help. And try to avoid sleeping on your back since apnea is usually worse when you sleep on your back. So try some tricks like sewing a tennis ball in the back of your pajamas to keep you off your back when your alseep. If those things doesn't help, we can do the sleep test later."

And the patient doesn't get any better (either because they can't keep the weight off or because the apnea is not mild or because the apnea is not caused by the weight in the first place). But the patient doesn't appear to get any worse in any dramatic fashion either. And so on subsequent check ups, the patient never, ever brings up the snoring and daytime sleepiness again because he/she knows "I can't ever get used to sleeping with a mask on my face."

Now, in my humble opinion, these sites would better serve the public health needs caused by undiagnosed OSA by addressing the very negative stereotypes of CPAP therapy up front. And I wish these sites would present CPAP in a positive light as a therapy that does require work and education on the patient's part, but also stress that successfully adapting to life with CPAP can be done by the average OSA patient with appropriate follow up medical support, patient education, and patient support groups.

robysue wrote:And Eric,

Part of the reason all the official sites stress all the non-CPAP ways to treat OSA (while at the same time acknowledging CPAP is the "gold standard" of treatment) is that these are relatively cheap (except for surgery) things to try that might indeed help some patients with very mild apnea who are also overweight. And since some 50 to 60 percent of Americans are overweight these days, there are plenty of folks who are both overweight and complain of excessive daytime sleepiness and fatigue. [What do these sites recommend to patients who are NOT overweight by the way? CPAP]

And also the authors of these sites know that GPs who deal with patients every day see the same instantaneous reaction 99.9% of the population when told the may have apnea. The typical conversation all too often goes something like this:

• Patient describes daytime symptoms of excessive sleepiness, fatigue, difficulty with concentration, and the fact that spouse says they snore.
  
  Doc: "You should get a sleep test. You might have sleep apnea."
  
  Patient: "No way will I ever sleep with a mask on my nose every night. So no I don't want to d a sleep test right now. Isn't there something else you can test for that might explain my daytime sleepiness?"

I could care less about the patient who "refuses to wear their gear and refuses to have a sleep test." I say screw those patients. If they want to die, let them die. We are all ultimately self responsible for our lot in life, short of a coma or flat out demented condition.

Eric

EricinNC wrote:
I could care less about the patient who "refuses to wear their gear and refuses to have a sleep test." I say screw those patients. If they want to die, let them die. We are all ultimately self responsible for our lot in life, short of a coma or flat out demented condition.

Eric

That is pure stupidity because those patients are the ones that end up in ER using equipment and resources that could help you. They fill up wards with heart issues, nursing homes with stroke victims and lots more. Why do think insurance companies and countries with social medicine pay for equipment? Because they want to save money on open heart surgery of course. That and strokes cost lots and lots of money.

BlackSpinner wrote:

EricinNC wrote:
I could care less about the patient who "refuses to wear their gear and refuses to have a sleep test." I say screw those patients. If they want to die, let them die. We are all ultimately self responsible for our lot in life, short of a coma or flat out demented condition.

Eric

That is pure stupidity because those patients are the ones that end up in ER using equipment and resources that could help you. They fill up wards with heart issues, nursing homes with stroke victims and lots more. Why do think insurance companies and countries with social medicine pay for equipment? Because they want to save money on open heart surgery of course. That and strokes cost lots and lots of money.

Because of Resmed, I may end up in the ER myself soon.

Eric

EricinNC wrote:
Because of Resmed, I may end up in the ER myself soon.

Eric

No it will be by your own actions or lack of them.

BlackSpinner wrote:

EricinNC wrote:
I could care less about the patient who "refuses to wear their gear and refuses to have a sleep test." I say screw those patients. If they want to die, let them die. We are all ultimately self responsible for our lot in life, short of a coma or flat out demented condition.

Eric

That is pure stupidity because those patients are the ones that end up in ER using equipment and resources that could help you. They fill up wards with heart issues, nursing homes with stroke victims and lots more. Why do think insurance companies and countries with social medicine pay for equipment? Because they want to save money on open heart surgery of course. That and strokes cost lots and lots of money.

You dont believe in personal responsibility I can tell. You believe in communism or socialism. We are all ultimately responsible for ourselves. No government organization is responsible for my welfare (bet you like that word huh, "welfare").

If an INDIVIDUAL (another anti-communist word I bet you dislike) chooses not to have a sleep study or use their CPAP gear, that is their freedom of will decision. If they die, screw'em.

Eric

BlackSpinner wrote:

EricinNC wrote:
Because of Resmed, I may end up in the ER myself soon.

Eric

No it will be by your own actions or lack of them.

Wrong....the Resmed gear Ive been given in the last couple months is not the same Resmed gear I was used to using. Resmed is making subpar stuff, they probably are aware of it, but probably dont give a flip because they are probably making a killing...not that they care they are probably killing lots of their patients as well.

Eric

All I know is Ive been thru three Resmed APAPs, all supposedly "new and improved" since December. All at the same settings as my old APAP and none of them work half as good as my original. They ramp up soooooooooooooooooooooooo slow. Like waiting for Grandma Moses to cross the street or something.

For straight CPAP, Im sure the Resmed S9s would be fine. For APAP? Ive written off modern era Resmed. The fact their CEO recently abruptly up and quit does not look good either. Resmed is obviously having issues and their "issues" are affecting my health and I dont like that.

Eric

EricinNC wrote:
You sound kinda paranoid to be honest. If I were a newbie to OSA and CPAP, Id rather rely upon my sleep doctor, a good brick and mortar sleep apnea oriented RT if I had access to one and credible source OFFICIAL websites...than this forum.

Eric

Please go back and actually READ what I wrote.

Use the standard medical system at least to start with. Just don't have a religious experience and put "faith" in it. Pay attention to what happens, and be willing to consider that they may be wrong and discuss it with them if it's not working. Consider other sources of information. Realize you need to be an active participant in your treatment.

I have had numerous cases where my doctors and I figured something out only because I looked at some other sources of medical information. I made my dad go to the doctor or hospital 3 times with life threatening conditions only because I had looked up medical information on my own. If he'd relied on his own doctor, he might have died in any of those cases. I made him go to the emergency room right away one time when he didn't want to because I googled his symptoms and figured out he was having a stroke. He made it to the emergency room before he collapsed and died a few days later. He would probably have died alone at home after lying there unable to move for a few days if I didn't "play doctor."

EricinNC wrote:Well, this is not a criticism of you personally so dont think that. But Im one of these guys that really has OSA and really relies on CPAP gear to stay alive. And things like a little noise or a little discomfort with my mask are small things to me. What is a big thing to me is POOR SLEEP. Non restorative sleep. Waking up feeling hung over. I was like that for YEARS.

No offense taken at what you say---although I do have "real OSA" in spite of what you might think. And in spite of being asymptomatic before my diagnosis.

From your other posts it sounds like you were one of the lucky ones who took to CPAP rather like a duck to water in that you started to feel better almost immediately and had little or no real problems adjusting to sleeping with the machine. [And now that your therapy is no longer going so well, you (correctly) resent the fact that you are not feeling well and you (correctly) want to figure out what to do to make your therapy work for you once again.]

But read those pages you provided links to: They really do strongly imply that the biggest problems with getting most OSA patients to be compliant with CPAP are trivial---such as noise and "a little discomfort" and a bit of inconvenience. And let me be crystal clear: It's the language on these web pages that I take issue with---not your own feeling that the discomfort you've dealt with is trivial compared to the benefits you've had with CPAP in the past.

For many CPAPers, the discomfort involved in adjusting to CPAP is NOT minor---when compared to the benefits they are feeling from sleeping with the machine during the first few weeks or months. And most of the dropouts throw the machine in the closet pretty quickly---I've read that many of them quit using the machine within the first two months.

And I strongly suspect that all too often the these discouraged newbies keep getting told (by the "official web pages", by their doctors, their DMEs, and even by users like you) the same old same old:

• The discomfort is minor, so just get over it. The machines are really quiet now, and you shouldn't be able to hear it. The inconvenience of dealing with a CPAP machine is not that great, just adjust your life to accommodate it. Just give the using the CPAP therapy MORE time and it will start working (wonders) for you.

And there's nary an effort made by the doctors, the DMEs, and the official web pages to give solid, practical advice on overcoming the difficulties that do NOT seem minor to the new CPAPer. And so eventually the night comes when the discouraged newbie CPAPer just can't face masking up: And they don't. And they sleep "ok"---as well as they ever did before embarking on this journey and (all too often) better than they've been able to during their incomplete adjustment to xPAP. And the next night, they can't force themselves to mask up either. And it gets progressively harder and harder to make the decision to mask up. Until eventually the now former CPAPer throws the machine in the closet so that it is not a constant reminder of their failure to thrive on CPAP---the gold standard of treating sleep apnea.

As for me, I am simply too damn stubborn to give up on myself. But I have to describe the discomfort I've been going through these past six months as major discomfort and major dysfunctioning and the benefits (such as they are) as rather minor: Waking up with a rock hard distended belly full of air for two weeks straight is NOT "a little discomfort." Waking up an average of 6--8 times for an average of 15 minutes or more apiece in six or seven hours of "sleep time" is NOT a minor inconvenience when it goes on for four months straight: It's a sign of major sleep deprivation. The brain fog that started AFTER I began CPAP was more than a major discomfort or major inconvenience. Imagine if you can being fully functional before starting therapy and then suddenly---in less than a week developing all the symptoms you described so eloquently as "What is a big thing to me is POOR SLEEP. Non restorative sleep. Waking up feeling hung over." But instead of it describing your life for years pre-CPAP, it STARTS with the beginning of your CPAP therapy. And continues for a solid four to five months. (Or more for some new CPAPers such as me.) And the benefits so far of sleeping with CPAP every night for the last six months? My feet and hands don't hurt when I wake up. And some mornings I don't have a headache. And my husband gets to sleep sounder. Don't get me wrong---those are nice (particularly the feet and hands not hurting so much), but these are NOT major life changing benefits compared to the major life changing discomfort and dsyfunctioning I was putting up with in the fall.

And I personally think those in the medical profession---including those official sites you cite---have an obligation to make it easier instead of harder for newly diagnosed OSA patient to adjust to this bizarre therapy warts and all. And in my not so humble opinion, those in the medical profession---including those official sites you cite---do a damn lousy job of helping anybody serious adjustment problems become a successful and life long CPAPer.

robysue wrote:

EricinNC wrote:Well, this is not a criticism of you personally so dont think that. But Im one of these guys that really has OSA and really relies on CPAP gear to stay alive. And things like a little noise or a little discomfort with my mask are small things to me. What is a big thing to me is POOR SLEEP. Non restorative sleep. Waking up feeling hung over. I was like that for YEARS.

No offense taken at what you say---although I do have "real OSA" in spite of what you might think. And in spite of being asymptomatic before my diagnosis.

From your other posts it sounds like you were one of the lucky ones who took to CPAP rather like a duck to water in that you started to feel better almost immediately and had little or no real problems adjusting to sleeping with the machine. [And now that your therapy is no longer going so well, you (correctly) resent the fact that you are not feeling well and you (correctly) want to figure out what to do to make your therapy work for you once again.]

That is an excellent, outstanding description of my current situation. Perfect. Exactamundo. What is up with Resmed?

Eric

Eric,

Now it's my turn: You write:

I say this because the things I read on THOSE sights mirrors more my personal experiences with OSA than what I read on these forms where many Internet "experts" post. For example, the weight loss/neck circumference issue. All the official sites say the same thing...lost weight and decrease your neck circumference and your OSA will probably improve.I agree with that here and say "wow that is really true." And I get blasted out of the water here.

and

Well, this is not a criticism of you personally so dont think that. But Im one of these guys that really has OSA and really relies on CPAP gear to stay alive. And things like a little noise or a little discomfort with my mask are small things to me. What is a big thing to me is POOR SLEEP. Non restorative sleep. Waking up feeling hung over. I was like that for YEARS.

No offense, but these two quotes are contradictory: In the first, you seem to imply that you identify strongly with the official sites' recommendations that life style changes may be enough to deal with (your) apnea. And the second clearly indicates that you know that all the lifestyle changes in the world wouldn't matter one whit in making your apnea genuinely better. Which is it?

From reading your other posts, it's clear you know you needed (and currently need) effective CPAP therapy. And you are currently dealing with a mess because the change in machine has led to ineffective CPAP therapy for you. And you are (correctly) desperate to get to a point where your CPAP therapy is once again effective.

And yet, here you are praising web sites that largely ignore the need for the majority of newly diagnosed OSA patients to suck up to the fact that they NEED to make a full faith effort to do their very best to adjust to CPAP therapy in order to "stay alive" and stay healthy. Why?

robysue wrote:

EricinNC wrote:Well, this is not a criticism of you personally so dont think that. But Im one of these guys that really has OSA and really relies on CPAP gear to stay alive. And things like a little noise or a little discomfort with my mask are small things to me. What is a big thing to me is POOR SLEEP. Non restorative sleep. Waking up feeling hung over. I was like that for YEARS.

No offense taken at what you say---although I do have "real OSA" in spite of what you might think. And in spite of being asymptomatic before my diagnosis.






And there's nary an effort made by the doctors, the DMEs, and the official web pages to give solid, practical advice on overcoming the difficulties that do NOT seem minor to the new CPAPer. And so eventually the night comes when the discouraged newbie CPAPer just can't face masking up: And they don't. And they sleep "ok"---as well as they ever did before embarking on this journey and (all too often) better than they've been able to during their incomplete adjustment to xPAP. And the next night, they can't force themselves to mask up either. And it gets progressively harder and harder to make the decision to mask up. Until eventually the now former CPAPer throws the machine in the closet so that it is not a constant reminder of their failure to thrive on CPAP---the gold standard of treating sleep apnea.

When I started CPAP years ago, I had good backup. I had a respiratory oriented brick and mortar DME that gave me excellent advice. I had a sleep doctor that was kind acting and encouraged me. And I WANTED to use the gear. And my sleep off CPAP was horrendus...repetitiously waking up for no reason, waking up with severe pressure headaches, waking up feeling hungover although I had not touched any booze the night before, severe daytime fatigue, hypertension that was not controlled despite taking high dosages of an ACE Inhibitor, etc. etc. I could go on and on about it.

I did have good backup. I had a IRL DME with RTs who actually knew how to measure my face for a mask and knew when to switch me to a FFM. And they did.

It seems to me that if there is a major, country wide problem with DMEs not doing their job with regard to OSA patients, that needs to be addressed in the judicial/legal system. And concrete action needs to be taken to FORCE CHANGE for the better. Instead of whining about it on an OSA forum.

Sounds to me like there is an OSA advocacy problem, not enough people advocating for OSA patients IRL and filing things like class action lawsuits to force changes and improvements. Thats basically what it sounds like to me.

Eric

EricinNC wrote: I could care less about the patient who "refuses to wear their gear and refuses to have a sleep test." I say screw those patients. If they want to die, let them die. We are all ultimately self responsible for our lot in life, short of a coma or flat out demented condition.

Eric whether you give a damn or not about these patients is irrelevant to my point.

You posted a thread praising official medical websites that de facto display some of this same attitude of not caring at all about why large numbers of OSA patients refuse to use a CPAP either before or after being prescribed one. And the people writing the copy for these official web pages have an obligation to present the gold standard treatment in a way that makes it more palatable in my opinion. And an honest discussion of what CPAP is really like---warts and all---would do a whole lot to dispel many of the myths that keep many patients from even being willing to think about trying CPAP.

An honest discussion of CPAP on one of these official sites would include a full discussion of what it's really like to wear the hose at night. And a list of common problems (not just vague statements that some people can't tolerate the mask). And, most important, an honest discussion of CPAP would include lists of practical things to try for those common problems. So that a person who fears they might have OSA or has just been diagnosed with OSA can see that while CPAP therapy does take time (possibly several months) to show real benefits and can involve real discomfort and real changes in lifestyle, each of the potential pitfalls with adjustment can be addressed and usually addressed through a variety of self-help measures. And tips on sorting out when an adjustment problem is serious enough to warrant involving the doctor or the DME would also be both reassuring and helpful.

And while you personally have no obligation to either care or help these poor souls who won't accept testing or treatment for OSA, the medical profession DOES have an obligation to these people: The medical profession's unwillingness to properly address both the negative stereotype of CPAP therapy and the very real difficulties many patients face in making it work violate the Hippocratic Oath of "First do no harm" in my opinion: Real harm is done every day by medical types propagating the ideas (1) CPAP can (and should) be put off until life style changes have been tried for OSA and (2) it's the patient's fault when the patient abandons CPAP therapy or will not even consider it because they've heard it's difficult, complicated, uncomfortable, and nothing can be done to make it feel any better.