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Re: Does anyone ever just give up on cpap?
Posted: Mon Jul 16, 2018 6:46 pm
by HoseCrusher
palerider wrote: ↑Mon Jul 16, 2018 11:09 am
Sluggish wrote: ↑Mon Jul 16, 2018 10:43 am
I think most people understand.. Cpap to get on track. Then we will have the energy to go to the grocery store and exercise etc.. With the eventual goal to be healthy again without the aid of a machine.
You just
*don't get it*.
We have sleep apnea because of
poor genetics... not because of a 'lifestyle'....
No YOU just don't get it!!!
We have sleep apnea because of poor epigenetics. Poor genetics play a part the through epigenetics you can control the expression of genes through... are you ready for this...
Diet and lifestyle.
https://www.whatisepigenetics.com/high- ... l-ability/
If this helps with brain function I wonder what else could benefit from it... Is it possible that you could reprogram the nervous system to keep the airway open during sleep?
https://bscb.org/learning-resources/sof ... t-make-us/
https://www.genome.gov/10000331/
Re: Does anyone ever just give up on cpap?
Posted: Mon Jul 16, 2018 7:08 pm
by Sluggish
Honestly I’d prefer everyone stick around anyway but I can respect your decision either way. I think it’s the hard line approach that is tough to digest for some people. To be clear, I’m not anti-cpap.
But CPAP or surgery and that’s it! Really??
OSA has barely been studied 20 years. How can we know everything yet? I read a study posted somewhere on this site that concluded the genetic/hereditary factor to only be +-20%. Personally that is not enough for me to say with such decree that it is ONLY genetic. Also while I’ve read many times on this board that “skinny people have OSA too” I think we can all agree that it is by far the less common presentation.
Of all the ‘skinny people’ with OSA I’d be curious to know how many of them smoke or have existing head/neck injuries or very poor posture or anything else that could be causing inflammation in the throat or difficulty breathing otherwise.
Re: Does anyone ever just give up on cpap?
Posted: Mon Jul 16, 2018 8:00 pm
by Mogy
jnk... wrote: ↑Mon Jul 16, 2018 4:39 pm
Mogy wrote: ↑Mon Jul 16, 2018 4:08 pm
jnk... wrote: ↑Mon Jul 16, 2018 1:31 pm
Mogy wrote: ↑Mon Jul 16, 2018 11:21 am
I have been able to reduce my untreated(meaning not using xPAP) AHI from 19.5 to about 5.
Please post copies of the lab/center PSGs that prove that statement.
All my tests were done with the Resmed Apnealink Air Home Sleep Tester, so I don't have any lab/center PSGs. I have posted some of my tests on other threads.
If you need to see the data it is here:
http://www.apneaboard.com/forums/Thread ... nea?page=4
That is a Type III device, so it can't determine sleep stages or sleep disruption. In other words, it can be used effectively to prove that your sleep is especially bad, but it is totally incapable of proving your sleep is good, or improved at all, by the course you are following. Therefore, you are using that device improperly to make meaningless assumptions about your sleep. As a personal appeal, I would ask that you please not use this forum to encourage others to follow that illogical and dangerous course. People's lives matter. Thanks.
If a Level I study was available to me I would definitely go for one. It isn't unless I travel to a private lab and pay for it myself.
Studies have shown that Level III studies are quite accurate as compared to Level I studies. We use what is available to us, and make decisions with what we have.
Not only is weight loss good for your health, it has been shown to lower AHI by many studies.
General exercise is good for your health, and it also has been shown to lower AHI.
Tongue/throat exercises have also been shown by studies to lower AHI.
So I decided to put it to the test. My results seem to agree with the studies.
I encourage others to determine whether what I have done is illogical and/or dangerous. You won't know for sure whether this will help or not unless you try.
People's health matter.
As an aside, using the data from your xPAP machine to determine whether your sleep apnea is controlled or not is similar to using a sleep test with fewer channels to determine your untreated sleep apnea.
They both have their limitations, but have been shown to be fairly accurate with the majority of OSA cases.
Re: Does anyone ever just give up on cpap?
Posted: Mon Jul 16, 2018 8:51 pm
by Uff Da
Sluggish wrote: ↑Mon Jul 16, 2018 7:08 pm
Of all the ‘skinny people’ with OSA I’d be curious to know how many of them smoke or have existing head/neck injuries or very poor posture or anything else that could be causing inflammation in the throat or difficulty breathing otherwise.
Well, I'm only one of those skinny people with OSA, but I have never smoked, do not have head or neck injuries or very poor posture. My BMI is 18 and I've been underweight most of my life. I'm now a septuagenarian, but have probably had OSA a decade or two. My uncorrected AHI in my sleep test was 88. I believe genetic factors are the reason for my OSA. I have a receding chin, and I understand that that increases the likelihood of OSA in skinny people. Also, my sleep doctor noted that the roof of my mouth is lower than normal, which she said can also be a factor. Who knows what other anatomical factors might be involved?
Re: Does anyone ever just give up on cpap?
Posted: Mon Jul 16, 2018 9:40 pm
by chunkyfrog
Is this another nature vs nurture thing? --or something like it?
Blaming the victim/sick person, etc. was the reason that leprosy was around for hundreds of years,
before somebody finally got the gumption to question the ASSumption that it was divine punishment
for a horrible sin.
OSA has taken its toll for much too long. (Poor Mr. Pickwick, and all those like him.)
No one deserves to suffer due to the ignorance that was rife during Dickens' time.
These prehistoric attitudes need to be FORGOTTEN, once and for all.
Re: Does anyone ever just give up on cpap?
Posted: Mon Jul 16, 2018 9:50 pm
by palerider
HoseCrusher wrote: ↑Mon Jul 16, 2018 6:46 pm
palerider wrote: ↑Mon Jul 16, 2018 11:09 am
Sluggish wrote: ↑Mon Jul 16, 2018 10:43 am
I think most people understand.. Cpap to get on track. Then we will have the energy to go to the grocery store and exercise etc.. With the eventual goal to be healthy again without the aid of a machine.
You just
*don't get it*.
We have sleep apnea because of
poor genetics... not because of a 'lifestyle'....
No YOU just don't get it!!!
We have sleep apnea because of poor epigenetics. Poor genetics play a part the through epigenetics you can control the expression of genes through... are you ready for this...
Diet and lifestyle.
https://www.whatisepigenetics.com/high- ... l-ability/
If this helps with brain function I wonder what else could benefit from it... Is it possible that you could reprogram the nervous system to keep the airway open during sleep?
https://bscb.org/learning-resources/sof ... t-make-us/
https://www.genome.gov/10000331/
Oh, I get it, you REALLY REALLY REALLY want something to 'cure' you... you're not going to get support on a CPAP FORUM, except from some other dreamers like yourself.
I wish you luck in a quest that I will bet you is futile. Come back and tell us about it when you're 'cured'.
Re: Does anyone ever just give up on cpap?
Posted: Mon Jul 16, 2018 9:54 pm
by palerider
Sluggish wrote: ↑Mon Jul 16, 2018 7:08 pm
Also while I’ve read many times on this board that “skinny people have OSA too” I think we can all agree that it is by far the less common presentation.
No, we can't.
What we can agree on is that they're less frequently *diagnosed* because so many doctors still have that outmoded "sleep apnea is something old fat men have" idea. I've talked to a number of young, fit people who have sleep apnea, and are being treated, who had to *fight* because their doctor said "oh, you don't have sleep apnea, you don't fit the profile".
Re: Does anyone ever just give up on cpap?
Posted: Mon Jul 16, 2018 10:11 pm
by jnk...
Mogy wrote: ↑Mon Jul 16, 2018 8:00 pm
If a Level I study was available to me I would definitely go for one. It isn't unless I travel to a private lab and pay for it myself.
Studies have shown that Level III studies are quite accurate as compared to Level I studies. We use what is available to us, and make decisions with what we have.
Might as well use a Magic 8-Ball, if one of those is available to you. Level III have only been found accurate for supporting the
diagnosis of moderate to severe OSA and are not even recommended for screening for mild. A negative finding for that test only means that in-lab is needed for that patient.
No one here is against healthy eating and activity.
Your so-called "results" have nothing to do with science or any valid studies.
What you are doing is dangerous and illogical by definition to yourself and others.
Home-machine data are meant to be used for trending only. Yes many misuse the data, but not anywhere near the way you misuse and mislead with that Type III data.
I don't care if you choose to play with your own life in the privacy of your home. It is your life to risk. But I hereby make my second personal request that you stop claiming on this board that what you are doing has any sane validity for anyone else who may fall for your nonsense and start playing with their own lives by not using CPAP consistently.
I will stop at that second appeal and not make a third and will leave you to those with authority on this board to decide whether the disinformation you post should stand. Hey, if they can allow it, I can ignore it. My first use of the foe list since the days of Alphabet Boy.
The rest is between you and your conscience.
Good day and night to you.
Re: Does anyone ever just give up on cpap?
Posted: Mon Jul 16, 2018 10:20 pm
by jnk...
Sluggish wrote: ↑Mon Jul 16, 2018 7:08 pm
But CPAP or surgery and that’s it! Really??
You continue to miss the point.
CPAP is the gold standard and the best science has to offer at this point. Yes that may change one day. Thus the studies. But the people who misread those studies about future possiblities and who claim other approaches have presently overtaken CPAP are mistaken. I get it that you don't like that fact. But whether or not you like the fact does not matter when comparing it to the fictions often posted.
Re: Does anyone ever just give up on cpap?
Posted: Mon Jul 16, 2018 11:55 pm
by Mogy
jnk... wrote: ↑Mon Jul 16, 2018 10:20 pm
Sluggish wrote: ↑Mon Jul 16, 2018 7:08 pm
But CPAP or surgery and that’s it! Really??
You continue to miss the point.
CPAP is the gold standard and the best science has to offer at this point. Yes that may change one day. Thus the studies. But the people who misread those studies about future possiblities and who claim other approaches have presently overtaken CPAP are mistaken. I get it that you don't like that fact. But whether or not you like the fact does not matter when comparing it to the fictions often posted.
I don't claim that any other approach has presently overtaken CPAP.
Unfortunately CPAP only treats 50% of people with OSA at best. The other 50% need alternatives.
Re: Does anyone ever just give up on cpap?
Posted: Tue Jul 17, 2018 12:02 am
by Mogy
jnk... wrote: ↑Mon Jul 16, 2018 10:11 pm
Mogy wrote: ↑Mon Jul 16, 2018 8:00 pm
If a Level I study was available to me I would definitely go for one. It isn't unless I travel to a private lab and pay for it myself.
Studies have shown that Level III studies are quite accurate as compared to Level I studies. We use what is available to us, and make decisions with what we have.
Might as well use a Magic 8-Ball, if one of those is available to you. Level III have only been found accurate for supporting the
diagnosis of moderate to severe OSA and are not even recommended for screening for mild. A negative finding for that test only means that in-lab is needed for that patient.
No one here is against healthy eating and activity.
Your so-called "results" have nothing to do with science or any valid studies.
What you are doing is dangerous and illogical by definition to yourself and others.
Home-machine data are meant to be used for trending only. Yes many misuse the data, but not anywhere near the way you misuse and mislead with that Type III data.
I don't care if you choose to play with your own life in the privacy of your home. It is your life to risk. But I hereby make my second personal request that you stop claiming on this board that what you are doing has any sane validity for anyone else who may fall for your nonsense and start playing with their own lives by not using CPAP consistently.
I will stop at that second appeal and not make a third and will leave you to those with authority on this board to decide whether the disinformation you post should stand. Hey, if they can allow it, I can ignore it. My first use of the foe list since the days of Alphabet Boy.
The rest is between you and your conscience.
Good day and night to you.
Let me try to get this straight.
It is okay to say that my xPAP AHI is 0.5 as reported by my Resmed A10 Autoset?
On the other hand it is illogical and dangerous to say that my untreated AHI is 5 as reported by a Resmed Apnealink Air Level III HST?
Re: Does anyone ever just give up on cpap?
Posted: Tue Jul 17, 2018 12:14 am
by Lucyhere
Mogy wrote: ↑Mon Jul 16, 2018 11:55 pm
jnk... wrote: ↑Mon Jul 16, 2018 10:20 pm
Sluggish wrote: ↑Mon Jul 16, 2018 7:08 pm
But CPAP or surgery and that’s it! Really??
You continue to miss the point.
CPAP is the gold standard and the best science has to offer at this point. Yes that may change one day. Thus the studies. But the people who misread those studies about future possiblities and who claim other approaches have presently overtaken CPAP are mistaken. I get it that you don't like that fact. But whether or not you like the fact does not matter when comparing it to the fictions often posted.
I don't claim that any other approach has presently overtaken CPAP.
Unfortunately CPAP only treats 50% of people with OSA at best.
The other 50% need alternatives.
I doubt that anyone would argue that point. But until
proven alternatives are available, the only (proven) solution is CPAP.
Re: Does anyone ever just give up on cpap?
Posted: Tue Jul 17, 2018 2:30 am
by Superball
Mogy wrote: ↑Tue Jul 17, 2018 12:02 am
Let me try to get this straight.
It is okay to say that my xPAP AHI is 0.5 as reported by my Resmed A10 Autoset?
On the other hand it is illogical and dangerous to say that my untreated AHI is 5 as reported by a Resmed Apnealink Air Level III HST?
Yes. Why would you ever think those two are remotely equivalent?
The Autoset might include some sleep/wake junk, but the number will be at least as high as your actual AHI for the night.
The level III test uses an
NW algorithm that can be very inaccurate.
Re: Does anyone ever just give up on cpap?
Posted: Tue Jul 17, 2018 2:54 am
by Superball
Sluggish wrote: ↑Mon Jul 16, 2018 7:08 pm
Honestly I’d prefer everyone stick around anyway but I can respect your decision either way. I think it’s the hard line approach that is tough to digest for some people. To be clear, I’m not anti-cpap.
But CPAP or surgery and that’s it! Really??
OSA has barely been studied 20 years. How can we know everything yet? I read a study posted somewhere on this site that concluded the genetic/hereditary factor to only be +-20%. Personally that is not enough for me to say with such decree that it is ONLY genetic. Also while I’ve read many times on this board that “skinny people have OSA too” I think we can all agree that it is by far the less common presentation.
Of all the ‘skinny people’ with OSA I’d be curious to know how many of them smoke or have existing head/neck injuries or very poor posture or anything else that could be causing inflammation in the throat or difficulty breathing otherwise.
The sleep apnea literature is problematic in one big way - it very much underestimates the effectiveness of CPAP due to the difficulty of conducting a proper trial. So many papers have mean adherence rates of less than 4 hours in the experiment group, and the whole idea of a "sham CPAP" is pretty fundamentally flawed.
The literature also tells us that we can probably cut our AHI in half by losing some weight (assuming BMI at least in the high 20s or whatever), wearing a mouth guard that messes up your jaw, and doing the right kind of myofunctional therapy. Unfortunately, going from an AHI of 60 to 30 still doesn't get you off CPAP.
CPAP is the gold standard because it works far better than anything else, and further research just seems likely to make CPAP look even better.
Also I don't think anyone claimed OSA is only genetic or hereditary? Palerider was saying that it is often due to the anatomical structure of the airway, which can be affected by a lot of things as people grow up. That's really not a controversial position to take.
Re: Does anyone ever just give up on cpap?
Posted: Tue Jul 17, 2018 5:38 am
by ChicagoGranny
Superball wrote: ↑Tue Jul 17, 2018 2:54 am
Superball
Welcome to the forum. It may not seem like it at times, but this forum is heavily tilted to the rational, practical side. You make a nice addition to that side.