lose-weight-before-trying-cpap-sleep-apnea-treatments

[cire Enginnering]

To suffer or to not suffer. I will never go through what I went through prior to CPAP therapy again. Had Steve Jobs listened to his doctors he'd probably still be alive.

[49er]

To suffer or to not suffer. I will never go through what I went through prior to CPAP therapy again. Had Steve Jobs listened to his doctors he'd probably still be alive.

Hi cire Enginnering

Apparently, Steve Jobs cancer was fast growing so there is no guarantee that if he had started with conventional cancer treatment, he would still be alive. A good friend's husband listened to his doctors but tragically, he died very quickly from the cancer.

And by the way, I don't mean to discourage people who have cancer as I also know people who have done very well with treatment. But I just have the feeling it wouldn't have mattered in Jobs's case. But I am not a doctor so it is just my opinion.

Obviously, pap therapy is a different ballgame.

49er

[echo]

This also totally ignores the fact that some people may still have OSA, even at a "normal" weight. I am 100% sure that I had OSA as a teenager, when I was skinny and athletic (not Olympic quality atheletic, I'm afraid). Sleep doc took one look at me before my first PSG and said that she was sure I had OSA due to my narrow airway (and not from the extra weight I had piled on in the interim!). There are plenty of people that are not overweight and yet have OSA due to their facial structure - if some of those people happen to gain weight for other reasons (like me - hypothyroidism), then the OSA isn't from the weight but from their anatomy! And denying them treatment while waiting for them to lose weight is malpractice! And we all know that many people gain weight *because* of the OSA.
Articles like this make me so angry!

[Todzo]

I have been getting the feeling for some time that the xPAP industry is indeed shooting itself in the foot by preventing the research we desperately need to - find out what is really going on in terms of how people use xPAP - find out what the problems are so that finally we can actually address the problems and move toward getting Obstructive Sleep Apnea well treated.

I think we should all write letters to our congressmen concerning getting the studies we need to sort this out and I think we should do this soon!!!

So just how are they going to do long term studies ethically? Are you volunteering to do without cpap therapy for a few years to see if you deteriorate? I am sure not.

BlackSpinner please understand that the way that you or I use CPAP is not common. We download our CPAP data and use it in our care. That is extremely rare and represents a complete departure from standard clinical practice.

Standard care seems to be to do a quick snapshot sleep study (often one half night) followed by another “snapshot” titration study and the setting is to be good for years without follow up. I know that would not have worked for me. I do not think it is likely to work for many. So when I hear that usability rates long term for CPAP are very low I am not surprised.

Another hugh part of this, I think, is that the industry does not support research. Even the doctors do not know “what is in the little black box” that they are proscribing to us for treatment. There is too much “proprietary research” going on. This needs to become out into the open.

But they need guidelines so this is what one agency proscribed in the document used to produce the article (see: http://annals.org/article.aspx?articleid=1740756 ):

– – – – –
Description: The American College of Physicians (ACP) developed this guideline to present the evidence and provide clinical recommendations on the management of obstructive sleep apnea (OSA) in adults.
...

… Although moderate-quality evidence showed that CPAP improves sleep measures compared with control or sham devices in patients with at least moderate OSA (AHI
score greater than or equal to 15 events/h), there was little or no evidence on the effects of CPAP on other important clinical outcomes.
..

[The clinical outcomes looked at with no statistically significant indication of improvement found in the research reviewed:

Quality of Life
neurocognitive
psychological
blood pressure
hemoglobin A1c
hypertension
cardiovascular events
heart failure symptoms
]
– – – – –

So I think what they are looking at here amounts to the results of unmanaged CPAP therapy. No use of data for feedback not enough good results to note. Not a shock.

But I think that another layer which is added to the “no feedback used” is a complete denial of the very real issues that affect the therapy in process. In terms of the usability issues with CPAP the guidelines developers talked about such things as discomfort, skin irritation, noise, and claustrophobia. To me those are petty issues far from the real issues that are causing the problems. In a recent study from Australia[1] minimal genioglossus muscle responsiveness, low arousal threshold, and high respiratory control loop gain were found to be causes of OSA. While CPAP might help a bit with genioglossus muscle responsiveness by shrinking the tongue it will likely exacerbate low arousal threshold by the noise and often the use of pressure pulses and will definitely exacerbate high respiratory control loop gain by the plus factor of the CPAP pressure itself.

I think the research I would most like to see would test how much positive change can be made by using the data regularly for lifestyle management and as a constant check of how the therapy is going. I think the unethical thing here would be to not do that research.

Another would be how exercise or vitamin D3 might help with high respiratory control loop gain as well as other possibilities such as EERS or dynamic CO2 therapy.

Until the real issues are addressed CPAP will do good for only a very few as it apparently is doing right now.

[1] http://www.atsjournals.org/doi/abs/10.1 ... pJVaUN385Z

[BlackSpinner]

BlackSpinner please understand that the way that you or I use CPAP is not common. We download our CPAP data and use it in our care. That is extremely rare and represents a complete departure from standard clinical practice.

Standard care seems to be to do a quick snapshot sleep study (often one half night) followed by another “snapshot” titration study and the setting is to be good for years without follow up. I know that would not have worked for me. I do not think it is likely to work for many. So when I hear that usability rates long term for CPAP are very low I am not surprised.

I know at least 5 other people personally who wear cpap to bed who never have down loaded there data and are happy using it and have for years. Three of them lived in the apartment building where I used to live, so out of 12 apartments, 3 had long term cpap users (including me, one was a couple both using cpap). I know of 2 in my knit group but one is having trouble due to lung issues (chemical burns)
I know of only one person who stopped using his and he was using it more for snoring to benefit his wife. I walked into a local electronics store about a month ago to buy a smart card reader so I could down load my data (something I still haven't done) and explained why I wanted it and the sales guy said "yes I know, I just got one too, aren't they wonderful? I feel so much better now". So we are not that unique or special.

[Todzo]

BlackSpinner please understand that the way that you or I use CPAP is not common. We download our CPAP data and use it in our care. That is extremely rare and represents a complete departure from standard clinical practice.

Standard care seems to be to do a quick snapshot sleep study (often one half night) followed by another “snapshot” titration study and the setting is to be good for years without follow up. I know that would not have worked for me. I do not think it is likely to work for many. So when I hear that usability rates long term for CPAP are very low I am not surprised.

I know at least 5 other people personally who wear cpap to bed who never have down loaded there data and are happy using it and have for years. Three of them lived in the apartment building where I used to live, so out of 12 apartments, 3 had long term cpap users (including me, one was a couple both using cpap).

I am very happy to hear that you all are getting good medical care up there. Wonderful!!!

However I wonder if it would be very much better if the data were being used to tune lifestyle and therapy as the months and years progress. All bodies change and we all need guidance to change well.

I believe that the use of my CPAP data several times a week has helped me greatly. I long for others to see this in their lives as well.

I know of 2 in my knit group but one is having trouble due to lung issues (chemical burns)
I know of only one person who stopped using his and he was using it more for snoring to benefit his wife. I walked into a local electronics store about a month ago to buy a smart card reader so I could down load my data (something I still haven't done) and explained why I wanted it and the sales guy said "yes I know, I just got one too, aren't they wonderful? I feel so much better now". So we are not that unique or special.

I would dearly like to believe that you are right BlackSpinner however the very sad sad usability numbers coupled with the guidelines builders' assessment that no statistically significant indication of improvement was found in the research reviewed for Quality of Life, neurocognitive, psychological, blood pressure, hemoglobin A1c, hypertension, cardiovascular events, and heart failure symptoms would indicate that you are not.

[49er]

I would dearly like to believe that you are right BlackSpinner however the very sad sad usability numbers coupled with the guidelines builders' assessment that no statistically significant indication of improvement was found in the research reviewed for Quality of Life, neurocognitive, psychological, blood pressure, hemoglobin A1c, hypertension, cardiovascular events, and heart failure symptoms would indicate that you are not.

Todzo,

As I am sure you are well aware in reading alot of medical journals, that without access to the full scale study to evaluate, conclusions are pretty meaningless and actually can be deceptive. I wish I had a nickle for every time I read a full scale study in which the conclusions were totally different from what an article was alleging.

Also, many people have reported that their health improved significantly after using the pap machine. I am not ready to just discount their experiences.

I am not denying that what you have mentioned above is totally unrealistic. Many people have complained that in spite of using the pap machine for several months with full compliance don't feel any better. But again, without access to the full scale study, I just feel any judgments are premature.

49er

[RogerSC]

It does NOT say that weight loss should be tried BEFORE CPAP. It says that weight loss should be recommended in obese OSA patients along WITH CPAP, and if a patient cannot tolerate CPAP, then an oral device should be tried.

Can't say that I agree with that...the title of the article is "Lose Weight Before Trying Other Sleep Apnea Treatments".

This passage appears in the article:

For most people, the guidelines say, the first and best treatment is simple and obvious — lose weight. "Not everyone with sleep apnea is overweight, but most patients are," Cooke says. Losing weight gets rid of fat that blocks the windpipe. It would "not only fix your sleep trouble, it would help your cholesterol, it would help your knees, your clothes would fit better and you would be a happier person," she says.

Patients who still have symptoms at that point might need to go to a sleep clinic and do an overnight test for apnea.

So I"m not sure where you're getting that it doesn't say that weight loss should be tried BEFORE CPAP...Seems to me that it says it quite clearly.

And whether or not I wear knickers is my business *smile*.

[Catnap]

Quote from the Medscape article I just posted about this morning (emphasis mine): "Although weight is an important feature of OSA, overreliance on the body mass index (BMI) can lead to missed diagnoses in some patients. OSA occurs in nonobese patients, including those with normal BMIs. Being overweight should not be an absolute criterion for considering OSA in otherwise symptomatic patients....In our trial, surgical weight loss resulted in substantial reductions in the AHI (from 47.9 ± 33.8 to 24.5 ± 18.1 events/hr; P < .001). However, OSA persisted in 96% of the cohort, with the majority (71%) still having moderate or severe disease. In a subsequent meta-analysis of 342 patients from 12 published trials, we found similar conclusions, with the majority of patients having persistent OSA after substantial weight loss (mean pooled postoperative AHI, 15.8 events/hr; 95% confidence interval, 12.6-19.0 events/hr).[7]

[Todzo]

I would dearly like to believe that you are right BlackSpinner however the very sad sad usability numbers coupled with the guidelines builders' assessment that no statistically significant indication of improvement was found in the research reviewed for Quality of Life, neurocognitive, psychological, blood pressure, hemoglobin A1c, hypertension, cardiovascular events, and heart failure symptoms would indicate that you are not.

Todzo,

As I am sure you are well aware in reading alot of medical journals, that without access to the full scale study to evaluate, conclusions are pretty meaningless and actually can be deceptive. I wish I had a nickle for every time I read a full scale study in which the conclusions were totally different from what an article was alleging.

Lots of politics involved in the medical process these days. It is sad.

Also, many people have reported that their health improved significantly after using the pap machine. I am not ready to just discount their experiences.

Nor am I. Indeed I believe that CPAP is a largely untapped resource due to what seems to me a very irresponsible application of it without the common use of data to make the changes along the way that will always be.

Honestly, how hard can it be to automate the data gathering process? Many machines come with connection into the cell system right now. A few doctors do review data and even make changes remotely. Some companies even now automatically download, analyze, and use the results to inform patient and doctor of red flags or good progress.

If this were expanded such that the patient could use the data daily for guidance of his own lifestyle management and done industry wide we would see a lot more success long term I do believe. As well we would have a hugh data base to find and correct the very real problems that exist with CPAP use.

I am not denying that what you have mentioned above is totally unrealistic. Many people have complained that in spite of using the pap machine for several months with full compliance don't feel any better. But again, without access to the full scale study, I just feel any judgments are premature.

49er

After spending some time in the medical literature as well as reading ten thousands of posts on the forums over the years, well, I would simply like to see the industry move in directions which are most likely to change what I already believe to be true. That CPAP works well for few. That CPAP is a mostly untapped resource.

[BlackSpinner]

It does NOT say that weight loss should be tried BEFORE CPAP. It says that weight loss should be recommended in obese OSA patients along WITH CPAP, and if a patient cannot tolerate CPAP, then an oral device should be tried.

Can't say that I agree with that...the title of the article is "Lose Weight Before Trying Other Sleep Apnea Treatments".

This passage appears in the article:

But she is NOT quoting the article, she is quoting the ORIGINAL research which the article refers to.

[BlackSpinner]

I would dearly like to believe that you are right BlackSpinner however the very sad sad usability numbers coupled with the guidelines builders' assessment that no statistically significant indication of improvement was found in the research reviewed for Quality of Life, neurocognitive, psychological, blood pressure, hemoglobin A1c, hypertension, cardiovascular events, and heart failure symptoms would indicate that you are not.

No the papers don't say that. Most of them state there is no research to prove it. Which is a whole different animal.

[Janknitz]

It does NOT say that weight loss should be tried BEFORE CPAP. It says that weight loss should be recommended in obese OSA patients along WITH CPAP, and if a patient cannot tolerate CPAP, then an oral device should be tried.

Can't say that I agree with that...the title of the article is "Lose Weight Before Trying Other Sleep Apnea Treatments".

This passage appears in the article:

But she is NOT quoting the article, she is quoting the ORIGINAL research which the article refers to.

Exactly. We see this ALL the time. The press writes headlines based on something they read in the article. Often the headlines are cherry-picked info, but not necessarily what the primary source really said. Almost all the "good news" about statins comes from this type of reporting, because the reporters are not scientists and come at these articles with a bias--that cholesterol is always bad, and the primary cause of heart disease. Thus a scientific article showing that cholesterol is lowered by a certain drug is interpreted to mean that this drug prevents heart disease. And in this case, a guideline saying that weightloss is effective in reducing AHI is interpreted to say weightloss should be tried first. If you read the primary source, it says weightloss is very effective, it doesn't say it should be tried first and only when that fails should CPAP be tried.


I always take the headlines in news articles (like the ones that Todzo likes to post) with a huge grain of salt. It's important to read the primary sources whenever possible, to know what was really said. Sometimes only the abstracts are available, but in this case, the entire article was available and I posted the link above. It did not say what the headline said.

[jnk]

I believe that often it is not even the writer of the "news" article who writes the headline. Often an editor who has merely skimmed the article tries to find the most controversial statement possible that may help lure readers into the article, and then that editor twists those words into a title. Headlines are often the most misleading of all statements in a newpaper. And that's saying something.

[RogerSC]

Exactly. We see this ALL the time. The press writes headlines based on something they read in the article. Often the headlines are cherry-picked info, but not necessarily what the primary source really said. Almost all the "good news" about statins comes from this type of reporting, because the reporters are not scientists and come at these articles with a bias--that cholesterol is always bad, and the primary cause of heart disease. Thus a scientific article showing that cholesterol is lowered by a certain drug is interpreted to mean that this drug prevents heart disease. And in this case, a guideline saying that weightloss is effective in reducing AHI is interpreted to say weightloss should be tried first. If you read the primary source, it says weightloss is very effective, it doesn't say it should be tried first and only when that fails should CPAP be tried.


I always take the headlines in news articles (like the ones that Todzo likes to post) with a huge grain of salt. It's important to read the primary sources whenever possible, to know what was really said. Sometimes only the abstracts are available, but in this case, the entire article was available and I posted the link above. It did not say what the headline said.

Yes, sorry, the first time that I read the article I didn't see the link to the research paper.