CPAP is a patch, not a cure...

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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jpop
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Re: CPAP is a patch, not a cure...

Post by jpop » Thu Feb 14, 2019 10:11 pm

palerider wrote:
Thu Feb 14, 2019 12:27 pm

Ah, well, I tend to encourage people to disregard anything a DME says, anything a RT says, and about half of what doctors say, and ALL of what they mention offhand....

Depending on what you want to believe, the truth is better, or worse than that, for instance: https://www.uptodate.com/contents/adher ... ssure-cpap
Fantastic, 29-83% non compliance.

Do you know what the difference is between a DME and a used car salesman is?

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Re: CPAP is a patch, not a cure...

Post by palerider » Thu Feb 14, 2019 10:16 pm

jpop wrote:
Thu Feb 14, 2019 10:11 pm
Do you know what the difference is between a DME and a used car salesman is?
You can trust the used car salesman more?

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Re: CPAP is a patch, not a cure...

Post by chunkyfrog » Thu Feb 14, 2019 10:51 pm

Ummmm, used car salesmen have sweaty hands--DME's wear gloves. (No fingerprints)

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Re: CPAP is a patch, not a cure...

Post by jpop » Thu Feb 14, 2019 10:56 pm

A used car salesman knows when they are lying.

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Re: CPAP is a patch, not a cure...

Post by Goofproof » Thu Feb 14, 2019 11:39 pm

chunkyfrog wrote:
Thu Feb 14, 2019 10:51 pm
Ummmm, used car salesmen have sweaty hands--DME's wear gloves. (No fingerprints)
Less Shock hazzard, when they turn back the hours on XPAP machines. :lol: Jim
Use data to optimize your xPAP treatment!

"The art of medicine consists in amusing the patient while nature cures the disease." Voltaire

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Re: CPAP is a patch, not a cure...

Post by palerider » Fri Feb 15, 2019 12:23 am

jpop wrote:
Thu Feb 14, 2019 10:56 pm
A used car salesman knows when they are lying.
Unless they're selling you a retro encabulator: https://www.youtube.com/watch?v=RXJKdh1KZ0w

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Re: CPAP is a patch, not a cure...

Post by mikevan10 » Fri Feb 15, 2019 2:45 am

palerider wrote:
Thu Feb 14, 2019 4:32 pm
mikevan10 wrote:
Thu Feb 14, 2019 5:58 am
deep/REM sleep
You ARE aware that REM and DEEP sleep are very VERY different things, right?
Sure do... and also that you don't get to the real good repair phase of rem sleep without going through the deep sleep phase..
The point i'm making is; sure xpap is great.. it can prevent apneas and allows people to get some deep sleep...
but a number (TOO Many - read any of the many support groups) dont seem to get the benefits that they should...
and maybe it's because there are other things that are preventing sufficient rem sleep for the repair effects to work...(go watch the video for some suggestions)

So as a therapy for sleap apnea xpap is great... but that man not be the whole solution

Why not be open to thinking about exploring outside the box...

Gut bacteria is just one idea, as is her ways of promoting the right kind of gut bacteria...

It would require some expensive and extensive study... but i applaud hosecrusher for raising the issue... something i had not seen or heard of before ..

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Re: CPAP is a patch, not a cure...

Post by mikevan10 » Fri Feb 15, 2019 2:52 am

Tricky Wash wrote:
Thu Feb 14, 2019 3:31 pm
mikevan10 wrote:
Thu Feb 14, 2019 5:58 am
What is the purpose of Xpap therapy is it just to stop apnea's happening or is the aim to work towards ensuring the patient gets enough deep/REM sleep to effect the repair cycles that it seems to initiate ??

The purpose of CPAP is to prevent the airway from collapsing during sleep. Period.
You see the problem i am trying to raise... read dog slobbers post after yours....
I agree totally with you..The purpose of CPAP is to prevent the airway from collapsing during sleep. Period.

The idea that is too often promoted is it is a cure all... and for some it is, for some it will work... but others need to explore beyond just their cpap therapy...
Last edited by mikevan10 on Fri Feb 15, 2019 3:01 am, edited 1 time in total.

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Re: CPAP is a patch, not a cure...

Post by mikevan10 » Fri Feb 15, 2019 3:00 am

Dog Slobber wrote:
Thu Feb 14, 2019 4:27 pm
mikevan10 wrote:
Thu Feb 14, 2019 5:58 am

The number of people across all of the sleep apnea bulletin boards & facebook groups who complain of using Xpap for months
and sometimes years without obtaining any measurable/noticable benifits; despite having reduced their apnea's to below ahi of 5; indicates that the therapy can be ineffective..
The question is why... is it because they may may haveThe number of people across all of the sleep apnea bulletin boards & facebook groups who complain of using Xpap for months a patch for their apnea's but are not falling into sufficient REM sleep for the repair mechanisms to work..
We often think that the current system of treatment is the Gold standard and resist even looking at other options..certainly the manufacturers of Xpap devices wouldn't like us to look too far..
Barry marshall's stupid idea that stomach ulcers are caused by bacteria was treated the way "ChicagoGranny" is treating the mere possibility that there may be a treatment for some peoples sleep disorders other than just xpap therapy...
That for some people, they maybe need to look beyond just xpap therapy... :D :)

What is the purpose of Xpap therapy is it just to stop apnea's happening or is the aim to work towards ensuring the patient gets enough deep/REM sleep to effect the repair cycles that it seems to initiate ??
CPAP therapy prevents further damage to the body and allows a lot of the damage to heal.

Sleep_Apnea.jpg
this is a great poster... but correlation is not necessarily causation...

It would be wonderful if cpap therapy cured all these ill's; the simple fact is that for many people it is not the cure all...

NOT SUGGESTING ANYONE GIVES UP ON CPAP THERAPY...

But some people need to explore other additional causes and look for additional treatments... for their ailments.... if cpap therapy does not appear to be working...

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Re: CPAP is a patch, not a cure...

Post by Dog Slobber » Fri Feb 15, 2019 6:22 am

mikevan10 wrote:
Fri Feb 15, 2019 3:00 am

this is a great poster... but correlation is not necessarily causation...

It would be wonderful if cpap therapy cured all these ill's; the simple fact is that for many people it is not the cure all...

Ahhh yes correlation is not necessarily causation, the mantra that allows one to dismiss evidence without suppling any evidence.

The link between untreated OSA and CPAP treatment is not deniable, especially severe OSA. There is a lot more evidence than simply posters. Dozens of peer reviewed comparative studies.

And nobody is saying CPAP cures all ills in all of the population. Nor is anybody saying that alternative or concurrent treatment shouldn't be explored.

https://www.ncbi.nlm.nih.gov/pubmed/15781100
https://www.ncbi.nlm.nih.gov/pubmed/16282178
https://www.ncbi.nlm.nih.gov/pubmed/18234904

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Re: CPAP is a patch, not a cure...

Post by jnk... » Fri Feb 15, 2019 7:47 am

Re: CPAP is a patch, not a cure...
Personally, I consider that statement to be not just ridiculous but also misleading and damaging. Its only purpose in my view is to attempt to denigrate an amazing solution to a very real problem, a solution that is saving lives. Now. Today. In the real world. That's why I find the content offensive when it is used in that way.

"Your proven 'patch' is only a patch so let's imagine that maybe one day there will be other patches that aren't proven at all yet and that as far as we actually know will only be less-successful patches than the present successful patch but anyway let me trick you with my imagining that those patches will be called by someone a 'cure'!"

The worst science-fiction is the genre that pretentiously takes itself seriously as historical fiction that is set in the present. :shock: :?

If something better that CPAP comes along, I'll use it. Until then, I won't be distracted by what I consider to be flights of fancy of "hey, maybe this will happen," and "hey, maybe that will happen." And, "This isn't ridiculous because some guy somewhere actually once said it out loud and is now 'studying' it!"

When you choose a medical approach, you go with present science before you turn to the non-scientific approaches that are a crapshoot and that are only pretending to have some scientific basis already. And "hey, I just thought of this possibility as an alternative to PAP therapy" is NOT, I repeat NOT, science. It just isn't. It doesn't even rise to the level of pseudo-science or junk science. It's just some random thought that passes through some random guy's head. And the fact that some hungry researcher once got paid to be tricked into studying it doesn't mean it has any basis in truth or any connection to reality. Until some connection with reality is made, the idea still flounders in the realm of not-yet-reality.

Posting random possibilities as if they are more than that is just so much noise that will only serve to obscure any real scientific breakthrough because everyone will be tired of reading these sorts of cries of "Wolf!" We have enough trouble debunking claims from the likes of FauxClean (thank you for that name, Grace) without having to debunk every possibility of something that in some alternate universe decades from now might be something valid to supplant PAP as the most elegant approach.

Any post that implies "Don't bother with PAP because it isn't good enough and something better may be just around the corner" is a post that can lead someone to make a choice that can lead that someone to his death. "Something better is just around the corner" ignores the fact that if you believe it in the case of PAP for OSA, the coroner could arrive before that corner comes. It is not harmless mental meanderings. It is dangerous to use that stuff to put down CPAP, in my opinion.

"Cure" or not, it is the best there is and should be given the full shot before moving on to less-successful or less-proven methods for second-best (or in the case of some ideas, no-best) approaches. I consider the ideas posted in this way to be a less-than-patches that have never cured anything or anybody and that steer people away from what they should be steering toward.

So if you want to post fanciful non-proven ideas about possibilities for the future, it might be best to label them that way for the sake of honesty and safety instead of using them for attacking PAP and making people think it is antiquated technology before that is actually true.
Last edited by jnk... on Fri Feb 15, 2019 10:34 am, edited 2 times in total.
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Re: CPAP is a patch, not a cure...

Post by jpop » Fri Feb 15, 2019 8:06 am

I haven't been around here very long, but the discussions I have read through have shown an open willingness to listen to alternative therapies, share personal experiences, both positive and negative. For instance, I looked up discussions relating to CBDs and Marijuana and found lots of good information. Some people found them useful, some didn't and there were also some suggestions about being an informed shopper. Not sure you can do much better than that.

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Re: CPAP is a patch, not a cure...

Post by jnk... » Fri Feb 15, 2019 8:13 am

"Dude, don't bother with that CPAP thingy; I smoked a doobie the other day and now my OSA is, like, GONE, man! Wanna fund my further studies?"

No, thank you. I'll just wait to see the reactions of the medical community when you get published, if you don't mind.

Posting on the subject of things other than CPAP and posting about possibilities is fine and dandy, as far as I am concerned. I enjoy those posts. It is only the "don't bother with the CPAP thingy" or "CPAP is a patch" part that irritates me personally. (Not that my irritations matter any more than anyone else's.)

The fact is that the CPAP 'patch' has been proven to save lives. I believe that is worthy of respect even when posting about growing 'patches' of substances that are not yet an accepted substitute for actual treatment of an actual life-and-death disorder.

Posting on other approaches to OSA makes this place interesting and fun and informative. I like it. I encourage it. But when wording is chosen that may lead others to believe that those discussions somehow make CPAP a waste of time as a mere 'patch,' I tend to want to post a rebuttal for what I consider a need for clarification based on my personal take. So I did.

Hey, I gotta rant about something. :lol:
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Re: CPAP is a patch, not a cure...

Post by palerider » Fri Feb 15, 2019 10:50 am

mikevan10 wrote:
Fri Feb 15, 2019 2:45 am
palerider wrote:
Thu Feb 14, 2019 4:32 pm
mikevan10 wrote:
Thu Feb 14, 2019 5:58 am
deep/REM sleep
You ARE aware that REM and DEEP sleep are very VERY different things, right?
Sure do... and also that you don't get to the real good repair phase of rem sleep without going through the deep sleep phase..
Well, you see, REM isn't the "repair phase", deep sleep is. And it's not something you 'go through' to get to REM. There many not even be any deep sleep before a REM cycle.

REM is a very active phase of sleep, not physically restorative.

For instance: http://healthysleep.med.harvard.edu/hea ... s-rem-nrem
mikevan10 wrote:
Fri Feb 15, 2019 2:45 am
The point i'm making is; sure xpap is great.. it can prevent apneas and allows people to get some deep sleep...
but a number (TOO Many - read any of the many support groups) dont seem to get the benefits that they should...
It's easy to say "people don't feel good while using CPAP, but altogether too many people "on cpap" have sub-optimal treatment. Sure, CPAP isn't going to solve everything, but many of those "don't get the benefits they should" are still slogging through the night with AHI's that are higher than they should be, so their breathing is still disturbing their sleep.
mikevan10 wrote:
Fri Feb 15, 2019 2:45 am
and maybe it's because there are other things that are preventing sufficient rem sleep for the repair effects to work...
Once CPAP is actually *optimized* most people feel much better, Just ask people here. Are there other aspects to poor sleep? Sure there are. But a lot of the issue with 'cpap not working' is that the standard for 'good enough' from doctors and RTs isn't actually good enough.
mikevan10 wrote:
Fri Feb 15, 2019 2:45 am
So as a therapy for sleap apnea xpap is great... but that man not be the whole solution

Why not be open to thinking about exploring outside the box...
What box? Nobody has ever read me saying that CPAP is the end-all and be-all of great sleep, but SDB is the first, easiest step to treat, with metrics that are pretty easy to gather. Once that is truly optimized, then if the person still feels bad, other avenues should certainly be explored...
mikevan10 wrote:
Fri Feb 15, 2019 2:45 am
Gut bacteria is just one idea, as is her ways of promoting the right kind of gut bacteria...
Gut bacteria isn't going to fix a narrow airway.
mikevan10 wrote:
Fri Feb 15, 2019 2:45 am
It would require some expensive and extensive study... but i applaud hosecrusher for raising the issue... something i had not seen or heard of before ..
Perhaps it's not the fact that the issue was raised, but the anti-cpap manner in which it was raised that's the heart of the issue.

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Re: CPAP is a patch, not a cure...

Post by JMB73 » Fri Feb 15, 2019 11:24 am

HoseCrusher wrote:
Thu Feb 14, 2019 9:05 pm

JMB73, I think you only worked on half of the solution...

You are describing exactly what Dr. Gominak experienced with her practice. Her first efforts were in getting the vitamin D levels up to a theraputic level. After doing this people didn't improve. That caused her to look closer and find that B is also needed to get things working properly.

The problem is that B dosing is difficult and individual. You end up trying different amounts until you get the results you are looking for.

Once you had your D levels up did you also supplement with B?

Her papers list almost 100 references that support her position. You may want to check some of those out. I don't believe any are based upon her practice or studies.
Actually, yes, I had been supplementing with B vitamins for years. Not mega-dosing, moderate dosages. I have very solid evidence that my gut bacteria is actually doing quite well, mainly due to healthy diet, and especially eating a bite of real, raw sauerkraut every day. I also think adding some coconut oil into my diet helped. But the point is that I did exactly what she recommended. I neglected to mention that I was also supplementing with B vitamins, but yes, I did that, too. You are welcome to dismiss my experience as "YMMV," but here is an example of someone who did this, correctly, and it had zero positive results on my sleep.

My reading of these "100 references" is that most of it is correlation and conjecture, not hard evidence. I stand by my conclusions, but, again, no harm in anyone trying for themselves. But I do state again, that if taking hormone D was such a massive cure for sleep and even helped with apnea, um...this would not be such an obscure idea at this point. Not to be argumentative, just stating a rational conclusion. I am not anti-any approach that works, but if something doesn't actually work, and the only thing we have to go on is this one woman claiming to have all but cured bad sleep with D in "thousands" of patients, and yet...somehow that is the only "evidence" she has...I'm sorry, but her theory is simply not true, or at least it is utterly unproven (same difference). Where are these thousands of patients with their experiences?.... Where are the actual studies backing up her theory? I'm sorry, but her theory simply holds no (real) water, in my experience; and, again, yes, I did do it right, though you're welcome and free to dismiss or disbelieve that. In all my searching, I could not find a single bit of hard corroborating evidence, let alone a single anecdotal example of someone doing this and it actually working for them. Or even not working. So I thought I'd share my personal experience, as someone who spent literally months meticulously following this woman's protocol.

Hey, I am all for looking for solutions...I have tried everything before moving towards trying CPAP, and that's going to be another experiment for me. Take care, and if you raise your D and it helps your sleep, please post about your experience. If it worked for you, then that would be great. :)