Do anyof you ever read "official" OSA literature?

[EricinNC]

Reading many of the posts here, I gotta say something. Do any of you ever go to "official" sources of information and read about OSA? Im talking the NIH website, the Mayo Clinic website, WebMD, the Cleveland clinic website and some others. Where the SBD info given is screened by sleep physicians are actual sleep MDs.

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.

It really makes me wonder...seriously.

I am so glad when I first went on CPAP years ago I had a good brick and mortar DME that had respiratory and SBD oriented RTs. If I had to rely on the info dispensed on this and a few other similar forums, I probably would not have stuck with CPAP.

To all CPAP newbies. First rely more on what your sleep doc IRL and your RTs IRL tell you. Rely more on official source websites for OSA information. After you have gotten on OSA for a year or so, then you can come to a forum like this and read the posts and many of them probably wont make a huge amount of sense to you. Some will, but many will not.


Eric

[BlackSpinner]

So maybe you should leave because NON of the stuff you spout really applies to me and lots of other people. Also a lot of stuff you link to is seriously out of date.

[EricinNC]

So maybe you should leave because NON of the stuff you spout really applies to me and lots of other people. Also a lot of stuff you link to is seriously out of date.

Its out of date that losing weight decreases OSA? Why does the NIH website and the Mayo clinic website and the WebMD website all say the same thing? Lose weight and OSA will probably improve? Why does every sleep MD I go to tell me that? Does not sound out of date at all to me.

Eric

[chunkyfrog]

My (former) DME passes out the same outdated, wrong-headed folderol.
Likewise, my diabetes educator gave me a pamphlet (compliments of Lilly-a drug company) that espoused 2-3 carb servings EVERY MEAL.
Way to raise my insulin use--I couldn't eat that much starch without going into a coma. g.d. shills!

[DocWeezy]

Many of us go far beyond the summaries that are given on sites like WebMD or any clinic website. These sites may not be updated frequently to reflect new research, and they may not be examining a wide spectrum of studies or looking at how the study was conducted.

I have access to academic databases and look up studies from peer reviewed journals, and read the entire study--not just the abstract. Most summary sites (like WebMD) do not analyze or discuss the sample size, protocol, initial research question, actual findings, statistical analyses done to determine the findings, researcher funding sources, etc. etc. etc. etc. Another thing to take into consideration is the date any study was done because research into OSA is evolving and changing, with new information and findings coming out.

Be careful when you cast aspersions here, especially when you are citing "summary" sources like WebMD...there are many people on this board who delve deeply into the research, examine multiple studies, and understand that how a study is conducted can impact the findings. This is far beyond reading any clinic website that is simply summarizing and repeating some of the older OSA studies. Just because someone's opinion is not the same as yours does not mean that the other person is ignorant or uninformed...it may be just the opposite.

Weezy

[BlackSpinner]

So maybe you should leave because NON of the stuff you spout really applies to me and lots of other people. Also a lot of stuff you link to is seriously out of date.

Its out of date that losing weight decreases OSA? Why does the NIH website and the Mayo clinic website and the WebMD website all say the same thing? Lose weight and OSA will probably improve? Why does every sleep MD I go to tell me that? Does not sound out of date at all to me.

Eric

Because you are only reading what applies to you and only you and only if it supports your view of life. Go away and lose weight. You are being like that act in The GS "Pirates of Penzance" "Just Go"
https://www.youtube.com/watch?v=o8JcIAV5wms

[EricinNC]

My (former) DME passes out the same outdated, wrong-headed folderol.
Likewise, my diabetes educator gave me a pamphlet (compliments of Lilly-a drug company) that espoused 2-3 carb servings EVERY MEAL.
Way to raise my insulin use--I couldn't eat that much starch without going into a coma. g.d. shills!

Im not talking about DME distributed literature. Sheeeesh. I am talking about current, up to date source material from credible sources:

http://www.nhlbi.nih.gov/health/dci/Dis ... hatIs.html

http://www.nhlbi.nih.gov/health/dci/Dis ... _what.html

http://www.nhlbi.nih.gov/health/dci/Dis ... hatis.html

http://www.mayoclinic.com/health/sleep-apnea/DS00148

http://www.mayoclinic.com/health/obstru ... ea/DS00968


http://www.mayoclinic.com/health/centra ... ea/DS00995

http://www.webmd.com/sleep-disorders/sl ... leep-apnea

[EricinNC]

Many of us go far beyond the summaries that are given on sites like WebMD or any clinic website. These sites may not be updated frequently to reflect new research, and they may not be examining a wide spectrum of studies or looking at how the study was conducted.

I have access to academic databases and look up studies from peer reviewed journals, and read the entire study--not just the abstract. Most summary sites (like WebMD) do not analyze or discuss the sample size, protocol, initial research question, actual findings, statistical analyses done to determine the findings, researcher funding sources, etc. etc. etc. etc. Another thing to take into consideration is the date any study was done because research into OSA is evolving and changing, with new information and findings coming out.

The NIH websites are not mere "summaries."

When I see people posting Medline abstracts what I think is 1) this person is a hypochondriac and 2) this person has too much time on their hands. Maybe needs a job or do some volunteer work.

Eric

[BlackSpinner]

The NIH websites are not mere "summaries."

When I see people posting Medline abstracts what I think is 1) this person is a hypochondriac and 2) this person has too much time on their hands. Maybe needs a job or do some volunteer work.

Eric

The words come right out of your mouth "1) this person is a hypochondriac and 2) this person has too much time on their hands." you know yourself well it seems

[EricinNC]

Is this info outdated? NIH does a huge amount of the research on OSA.

http://www.nhlbi.nih.gov/health/dci/Dis ... ments.html


How Is Sleep Apnea Treated?

Lifestyle changes, mouthpieces, breathing devices, and surgery are used to treat sleep apnea. Medicines typically aren't used to treat the condition.

The goals of treating sleep apnea are to:

* Restore regular breathing during sleep
* Relieve symptoms such as loud snoring and daytime sleepiness

Treatment may improve other medical problems linked to sleep apnea, such as high blood pressure. Treatment also can reduce your risk of heart disease, stroke, and diabetes.

If you have sleep apnea, talk with your doctor or sleep specialist about the treatment options that will work best for you.

Lifestyle changes and/or mouthpieces may be enough to relieve mild sleep apnea. People who have moderate or severe sleep apnea may need breathing devices or surgery.

If you continue to have daytime sleepiness despite treatment, your doctor may ask whether you're getting enough sleep. (Adults should get at least 7 to 8 hours of sleep; children and adolescents need more.)

If treatment and enough sleep don't relieve your daytime sleepiness, your doctor will consider other treatment options.
Lifestyle Changes

If you have mild sleep apnea, some changes in daily activities or habits may be all the treatment you need.

* Avoid alcohol and medicines that make you sleepy. They make it harder for your throat to stay open while you sleep.
* Lose weight if you're overweight or obese. Even a little weight loss can improve your symptoms.

[robysue]

Eric,

Yes, I've read many of the official sites.

Some of what they say resonates with me:

• OSA is largely the result of structural differences in the upper airway that cause an increased tendency for the airway to collapse when alseep.
  
  Even skinny people can have sleep apnea. Both men and women can have apnea.
  
  Sleep apnea can be largely asymptomatic for the sufferer, but the bed partner likely knows there's a problem. So listen to the spouse who says your snoring is a problem or who says you stop breathing at night.

But I've yet to run across an accurate description of what it feels like to actually sleep with a CPAP machine and a hose on your nose at one of these official sites.

And while many of these official sites do point out the large drop out rate for CPAP, they give vastly over simplified explanations about why OSA patients drop out. (Inconvenient? Noise? Lack of comfort? etc.) What about giving some real information about what kind of problems cause the discomfort and what kind of things CAN and DO address those problems in a POSITIVE fashion? It's all to easy to conclude from these sites that there is NOTHING that can be done to make CPAP more palatable if you find you can't stand it after a two or three weeks and want to just give up.

And I've yet to see an official site talk about the need for a machine that records full efficacy data. Or even a site that acknowledges such machines exist.

And finally, I've yet to see an official site that clearly and unambiguously advocates the need for quality patient education as a major tool in increasing patient acceptance of CPAP therapy. Indeed, when you compare their attitudes concerning the importance of patient education in treating such things as diabetes, obesity, and high blood pressure to their attitude towards patient education for OSA.

[EricinNC]

Eric,

Yes, I've read many of the official sites.

Some of what they say resonates with me:

• OSA is largely the result of structural differences in the upper airway that cause an increased tendency for the airway to collapse when alseep.
  
  Even skinny people can have sleep apnea. Both men and women can have apnea.
  
  Sleep apnea can be largely asymptomatic for the sufferer, but the bed partner likely knows there's a problem. So listen to the spouse who says your snoring is a problem or who says you stop breathing at night.

But I've yet to run across an accurate description of what it feels like to actually sleep with a CPAP machine and a hose on your nose at one of these official sites.

And while many of these official sites do point out the large drop out rate for CPAP, they give vastly over simplified explanations about why OSA patients drop out. (Inconvenient? Noise? Lack of comfort? etc.) What about giving some real information about what kind of problems cause the discomfort and what kind of things CAN and DO address those problems in a POSITIVE fashion? It's all to easy to conclude from these sites that there is NOTHING that can be done to make CPAP more palatable if you find you can't stand it after a two or three weeks and want to just give up.

And I've yet to see an official site talk about the need for a machine that records full efficacy data. Or even a site that acknowledges such machines exist.

And finally, I've yet to see an official site that clearly and unambiguously advocates the need for quality patient education as a major tool in increasing patient acceptance of CPAP therapy. Indeed, when you compare their attitudes concerning the importance of patient education in treating such things as diabetes, obesity, and high blood pressure to their attitude towards patient education for OSA.

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.

I dont appreciate these companies making gear that an "old timer" can quickly discern is shoddy. And then selling it for a lot of $$$$ marketing it as the best thing since sliced bread. A slow APAP pressure response is a very basic thing and when one response is slow as dirt and the other company responds super fast, that gets my attention. Especially since my original machine responded super fast and I did great on it.

Eric

[archangle]

WHAT!!!!

Are you suggesting that there is information on the internet that is incorrect? Shame! Shame!

Don't have a lot of "faith" on what you read on any internet site, including this one. Even if the Mayo Clinic or AMA site actually is THE best source of info on a subject, don't have "faith." Read the info, consider what it says, watch out for what the risks are, and use the information as a guide. Especially be careful about what a site tells you about something being risky.

There are many information sources. Each one has it's own level of trustworthiness, but you shouldn't have too much "faith" in any one.

Don't have too much "faith" in what your own doctor says. Even if he's a a good doctor who knows what he's doing, he can be wrong. Even if he's the one who found your very difficult and obscure medical condition before, he can be wrong this time. Follow his advice, but consider the possibility he's wrong in your particular case. I doubt there's ANY doctor out there who hasn't evaluated a patient, drawn reasonable conclusions and given exactly the wrong diagnosis or treatment for what's actually wrong with a particular patient. If he's a good doctor, he'll be willing to reconsider.

There are also a LOT of accepted professional medical practices that have been found out to be flat out wrong and changed over time.

Start out with the "standard" medical advice, but keep an eye on your own treatment and see how it works. Consider the advice of "non-standard" information sources, but don't have "faith" in them either. Take everything you hear with a grain of salt.

It's important to realize that "I'm going to look at what someone outside the medical system says" is not equivalent to "I'm abandoning all traditional medicine and going to use faith healing and quack medicine." I'm not suggesting that you should abandon the standard medical system, just that you realize that neither your doctor nor a web site should be worshiped as the gospel on a subject. Every medical information source is wrong for someone.

[EricinNC]

WHAT!!!!

Are you suggesting that there is information on the internet that is incorrect? Shame! Shame!

Don't have a lot of "faith" on what you read on any internet site, including this one. Even if the Mayo Clinic or AMA site actually is THE best source of info on a subject, don't have "faith." Read the info, consider what it says, watch out for what the risks are, and use the information as a guide. Especially be careful about what a site tells you about something being risky.

There are many information sources. Each one has it's own level of trustworthiness, but you shouldn't have too much "faith" in any one.

Don't have too much "faith" in what your own doctor says. Even if he's a a good doctor who knows what he's doing, he can be wrong. Even if he's the one who found your very difficult and obscure medical condition before, he can be wrong this time. Follow his advice, but consider the possibility he's wrong in your particular case. I doubt there's ANY doctor out there who hasn't evaluated a patient, drawn reasonable conclusions and given exactly the wrong diagnosis or treatment for what's actually wrong with a particular patient. If he's a good doctor, he'll be willing to reconsider.

There are also a LOT of accepted professional medical practices that have been found out to be flat out wrong and changed over time.

Start out with the "standard" medical advice, but keep an eye on your own treatment and see how it works. Consider the advice of "non-standard" information sources, but don't have "faith" in them either. Take everything you hear with a grain of salt.

It's important to realize that "I'm going to look at what someone outside the medical system says" is not equivalent to "I'm abandoning all traditional medicine and going to use faith healing and quack medicine." I'm not suggesting that you should abandon the standard medical system, just that you realize that neither your doctor nor a web site should be worshiped as the gospel on a subject. Every medical information source is wrong for someone.

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

[kteague]

Its out of date that losing weight decreases OSA? Why does the NIH website and the Mayo clinic website and the WebMD website all say the same thing? Lose weight and OSA will probably improve? Why does every sleep MD I go to tell me that? Does not sound out of date at all to me. Eric

Eric, I don't think you'll get much argument that weight is one factor in OSA. Even in your statement above you used the word "probably". I've never argued that weight absolutely can not cause sleep apnea. But I do protest the stereotyping mentality that has been prevalent in both society and the medical field. I blame the ignorance of stereotyping for those not meeting the stereotype going undiagnosed, thus untreated. There are too many fit and trim people proven by sleep studies to have OSA to ignore that the stereotype is too limited. Then there are those like me who come from a family prone to OSA, or were symptomatic before becoming overweight. Or those who have lost weight and still had OSA. And I take personal issue with any doctor advising a person to lose weight as the solution for sleep apnea. That advice condemns the patient to an undetermined extended period of continued damage from untreated apnea, and for those whose apnea was not resolved by the weight loss, possibly a lifetime of living under a false assumption. I believe sleep apnea should be treated in conjunction with weight loss, with testing after the weight loss is accomplished. And from the studies I've read (on PubMed), there will be those who even after bariatric surgery and extreme weight loss will still need CPAP.

As far as reading official studies, keep reading (even on the "official" sites) and you'll find contradicting studies, or studies that have become obsolete due to emerging information. By the way, I see links to official studies on here frequently. I learned more valid medical info here than from my first sleep doc.