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Reading My Tea Leaves

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

Humans survive by looking for patterns and using them to predict future outcomes but this process is too often diverted by wishful thinking and a desperate need to keep our world stable and predictable.

This results in us selectively reinforcing existing beliefs and skipping over information that fails to support those prejudices.

I have raised many queries through the years that might be viewed as stupid or negative or just plain contrary.

It seems to me that rarely have any of them been properly confronted or discussed.

Some of those queries were to do with the diagnostic processes for Apnea.

Others targeted claims revolving around the long-term risks of apnea and the assumed benefits of CPAP therapy.

A lot of queries revolve around what I consider to be collective misinformation from the sleep industry and consistent misdirection and misinterpretation of apnea research.

One outcome of this misinformation is the false assurance that CPAP therapy has no adverse effects.

Whilst studying the tea leaves in my cup, which is quite challenging being a coffee drinker, I wondered, once again, what impact CPAP has on sleep apnea.

Not the usual spiel and routine sales pitch, but much more literally and directly.

What impact does CPAP therapy have on the severity of our underlying sleep apnea?

If we studied 2,000 people with severe apnea and put 1,000 on CPAP for a year, then took the machines away and tested both groups without CPAP, how would they compare.

What differences would there be in the broader picture and what would that mean?

Could CPAP users with OSA become physically dependent on the machine?

Does continuous support of OSA further weaken throat muscles and increase untreated OSA events?

Could CPAP therapy for OSA be an irreversible self-perpetuating process?

Could CPAP therapy foster psychological dependence?

Once they have been assigned a CPAP machine how many severe apnea sufferers are ever tested again without the CPAP machine?

I thought I would save myself a lot of writing if I stumbled across something online but the closest I found was this report:

Impact of Treatment with Continuous Positive Airway Pressure (CPAP) on Weight in Obstructive Sleep Apnea

It doesn't directly address the subject of CPAP impact on Apnea but it does question a related assumption.

Now I've had my little rant could someone please explain how to read these coffee grinds?

Tasseography

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Sierra +0 points · about 1 month ago Sleep Patron

I learned a few things in reading that article. First I had never heard of a "sham CPAP", but concluded it is a CPAP modified so it delivers no therapy even though the user may think it is. Second, I have never heard the claim that CPAP is any benefit in losing weight. The final paragraph in the report seems to sum it all up.

"In conclusion, treatment of OSA with CPAP may result in modest weight gain. Thus, if overweight, OSA patients should be encouraged to lose weight by other modalities and not rely on any direct physiologic effect of CPAP."

I find it odd that anyone would think a CPAP would help them lose weight. The cause of apnea is related to being over weight in almost all cases. But, because you treat the apnea, there is no reason to think it will help you lose weight.

I guess I have always had low expectations of the benefits from using a CPAP. The sleep technician tried to tell me that it would cure my diabetes, and I could barely keep from laughing right in her office. It is kind of similar to the weight gain thing. Yes, being overweight can cause diabetes. Yes, being overweight can cause apnea. But, it does not follow that if you treat the apnea you will reverse the diabetes. Apnea does not cause diabetes. Diabetes does not cause apnea. But, they both can be caused by being overweight. Coincidental does not mean causality.

I suspect the same conclusion could be made about blood pressure. Increased weight increases your blood pressure. Increased weight causes apnea. But, that does not mean apnea causes high blood pressure and there should be no expectation that treating apnea would lower you blood pressure. Losing weight almost always will though.

My expectations out of CPAP treatment are simple. I expect it to keep me from snoring and keeping my wife awake. I expect it to possibly improve the quality of my sleep. That is about it. I do not expect it to lengthen the time I sleep, just improve the quality.

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

I had assumed it was a non-existent CPAP, essentially just a control group, but your conclusion might make more sense of the term sham. Sham CPAP

Personally, I think the use of sham CPAP machines raises more issues than it resolves.

I only linked that weight gain study to generate discussion, not necessarily to prove any indisputable point.

As you so clearly highlight there are very few certainties in these fields because of the complexity of entanglements and uncertainty of cause and effect amongst the many interactions that often accompany aging.

What it does tend to dispute, simply because there was a measurable difference, is the general acceptance within the sleep industry and amongst the CPAP community that CPAP therapy is harmless and can only be of benefit to adherents in both the short and long term.

If consistent studies established that CPAP therapy facilitates increased weight gain that is not a benefit especially when it would almost certainly increase the severity of the underlying apnea.

The results of that study were not clear and certainly not conclusive but it is a minor question mark in a field of research that, I would maintain, is heavily funded and influenced by the sleep industry and the associated insurance companies and hence unlikely to fund or publicize research that might be detrimental to the industry.

The real purpose of this thread was to find out if someone was aware of any credible research into the impact of CPAP on the underlying OSA or if it was so pointless or irrelevant that it really doesn't matter.

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Sierra +0 points · about 1 month ago Sleep Patron

I think the only real negative impact of CPAP therapy that I am aware of is when the person has central apnea issues which are aggravated with increased pressure. A person can get diagnosed with apnea and then when they start treatment the pressure from the treatment makes the apnea frequency worse instead of better. The ResMed and DreamStation machines distinguish between central apnea and obstructive apnea events and do not increase pressure in response to central apnea events. The F&P SleepStyle I am not so sure about. The older ones did not distinguish and in auto they would increase pressure to both central and obstructive events. That is not good. And even the ResMed machines are not perfect. I am sure that the hypopnea events that I have are central in nature, not retractive. The ResMed machines respond to hypopnea events with more pressure, which in turn can cause full central apnea events. I'm pretty sure that is what was happening to me when I was running in auto mode, and why my AHI is improved when I use the fixed pressure CPAP mode.

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PutSleepApneatoBed +0 points · about 1 month ago

Sierra; it is NOT true that the cause of SA is obesity. That is a terrible stereotype, and it is killing people.
SA causes the obesity, where it exists, because it decreases leptin the hormone of satiety, and increases gherlin, the hormone of appetite.

Sleep Apnea is pervasive on both sides of my family. Almost everyone has it. A few ARE overweight, but most are not. And most die relatively young, undiagnosed. But the symptoms/comorbidities are obvious—HBP, DM2, CVD

My 94 y.o. Mom was the exception. She escaped, because at the age of three, her tonsils and adenoids were removed, expanding her airway.

I had SA so severe, that I couldn't maintain REM sleep from puberty on. Many years later it was determined that I obstructed 83 times an hour in REM, when I could get into REM, which wasn’t often.

But I stopped dreaming at puberty, followed by a lot of other symptoms and comorbidities, all of which were misdiagnosed-probably because I was young, thin and female.

When I finally self-diagnosed in my 50s, the doctors told me that the reason for my SA was the combination of a narrow airway and a square jaw. (They couldn’t blame obesity, because I wasn’t.)

And yes, apnea DOES cause diabetes. Even one night of poor sleep causes insulin resistance. What do you think a lifetime of it does? But more to the point, SA causes obesity and if you desaturate badly, the hypoxia kills beta cells. (The pancreas is very sensitive to low O2 levels.)

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Sierra +0 points · about 1 month ago Sleep Patron

We will have to agree to disagree on your opinions on these subjects.

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PutSleepApneatoBed +0 points · about 1 month ago

PAP treatment will cure SOME problems caused by SA but not some of the most serious, which is why we need to be diagnosing and treating people MUCH earlier.

Treating SA “cured” my seizures, blackouts and irregular heartbeat/premature bigeminy, ADHD, cognitive/memory issues, perpetual exhaustion and loss of sense of direction. Treatment significantly increased my HDL level. It went from 35 to 55 within two months of starting treatment.

Treatment can also cure gout and AFIB, where those are caused by SA. I’ve seen it in others.

Treatment could NOT cure my prediabetes, which shortly became overt diabetes, HBP, NAFLD. The metabolic damage at the level of the mitochondria is probably not reversible, nor is most of the other metabolic damage, hence the general inability to lose weight, even with treatment. (Although some people do.) Usually, a lot of attention to diet and exercise will be required.

Net/net, some damage is reversible— and some is not. Pretty much what you might expect.

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

Hi PutSleepApneatoBed,

You have considerable knowledge and experience, much of it beyond my comprehension, but I find it hard to accept your opening paragraph regarding obesity and apnea.

Which came first? The chicken or the egg?

Apnea and obesity circle and compound each other, so there is a very high likelihood that they are connected, perhaps in multiple ways.

I think we are on the edge of dividing Apnea into a number of distinct groups, especially when we consider the more significant circumstances and potential causes and effects.

All generalities contain some truth but, in the big picture and on a large enough scale, there are always exceptions.

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PutSleepApneatoBed +0 points · about 1 month ago

It’s based on my experience. And logic. What causes sleep apnea is a narrow and/or collapsable airway.

I have a female friend, 5’7” and 400#. Her doctor was CERTAIN she would have DM2 or at least be pre-diabetic. To the doctor’s shock, She didn’t, and wasn’t.

Why?

My friend additionally reported “sleeping like a bear”. (She also didn't have sleep apnea.) But her dentist had an interesting finding. The interior of her throat was so wide, he was afraid of losing his instruments down her throat.

The first order, root cause of sleep apnea is a narrow or collapsable airway, which either anatomically of functionally collapses during sleep.

So, let’s take it to the next step: what are the second order causes of A narrow airway or collapsable airway?

The second order causes are several, among them:

1) a narrow face and/or high arched palate will result in a narrow airway in the left to right dimension;

2) a square jaw and/or receding chin will result in a narrow airway, top to bottom.

Add the loss of muscle tone that occurs during REM and you have an airway that will occlude.

Take thirty or forty years of undiagnosed (and hence untreated sleep apnea) and even the the most stalwart and self-disciplined will be hard put to avoid weight gain. And, of course, that will often further narrow the airway, making the SA worse.

The heritable anatomical causes are the reason SA runs in families.

Medicine has no idea how many people had the sleep apnea before the weight gain, because they aren't looking for it.

Besides, it is easier to blame the victim-than to deal with the costs and implementation strategies for societal-wide mass screening and testing for a condition for which many patients will not accept the gold standard treatment, PAP, anyway.

But the rich who have SA are routinely testing and treating their children, because they are on to this. The first line of treatment in children is to remove the tonsils and adenoids, followed by palate expansion and orthodonture, if necessary. Those measures alone sometimes result in “a cure”, although it may not be life long.

But even if the “cure” doesn't hold, it will moderate the AHI, allowing PAP treatment in patients who might otherwise require higher pressures than an ordinary APAP can provide. If you have SA, have your family members tested young, and then retested throughout life.

Can obesity, alone, cause SA? At the margin, certainly. Fatty deposits can narrow the airway. But the fundamental problem is the airway dimension and patency. (There are also neurological causes of loss of muscle tone in the airway.)

But I had severe SA at a very young age with a BMI of 19 and I know a lot of other people with the same experience. It’s just next to impossible to get diagnosed if you are some combination of young, thin, and female.

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

You have trodden a long and difficult road PutSleepApneatoBed and learned more terms and concepts than anyone should be compelled to acquire.

I'm thinking that I should have just stuck to the tea leaves because it would have been so much simpler than trying to figure out all of this.

My grasp of complex issues is rapidly fading which is why I launched this thread so that other people could sort out the complicated stuff. :)

In your above discussions, you have touched on some tantalizing concepts that I have tried to understand from different angles in the past.

"Rich" people do approach health and life differently and have different outcomes which can significantly alter the statistics for many health studies, especially Apnea studies. For my purposes perhaps the term 'rich' is too exclusive. If we are to be forever bound to the American model the delineation seems to be between those with health insurance and those without.

Diagnosis is another keyword for me because from my experience and observation it seems that it is too easy to get cursed with the Apnea label but perhaps a bigger problem is that being diagnosed with Apnea carries no assurances regarding all the other health issues that prompted the search for a solution in the first place.

"Heritable anatomical causes" I do love that term but every person is unique so to some extent 'heritable' is just one more factor amongst the tea leaves.

"Root cause" is such an all-encompassing term and hard to effectively embrace. Generally, we try to clarify this by dividing the tea leaves into groups and looking at each group separately on the assumption that at least some of the secondary causes are derived from similar factors.

There must be parameters out there somewhere but from my perspective, if we set aside Central Apnea as a different disorder, there are at least 6 or 7 types of Obstructive Sleep Apnea

Infant OSA,

non-age-specific OSA,

non-age-specific weight-related OSA,

age related OSA,

age and weight related OSA,

undecided,

none of the above

That's what I see when I stare at my tea leaves which are all very similar but the patterns for each group are slightly different which brings me back to a very old kids' science show which began and ended with "Why is it so?"

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PutSleepApneatoBed +0 points · about 1 month ago

Those aren’t really different types of Sleep Apnea.

They are just obstructive apneas occurring in people of different ages or physical attributes.
Some have other names though. Infant OSA can lead to SIDS, sadly.

In each instance there is no obstructive apnea unless the breathing is shut down by an obstruction/throat muscle collapse. Once the throat muscles shut down, in order to open the airway for the next breath, the sleeper must either awake, or get up to the first level sleep. Until then, the throat muscles will remain in lockdown, which is one reason why no one with an unknown sleep status (Or known OSA) should take sleeping pills. The only thing that is keeping them alive, is that they DO wake up to breathe.

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

They are not as yet separated or even clearly defined but the first five of the above 'types' is relatively distinct in their cause, effect, and progression.

Yes infant OSA may be connected to Sids and is almost certainly connected to learning impairment and probably also speech impediments.

The generalized differences in cause, effect, and progression between the adult 'types' are becoming more apparent from recent ongoing research.

These types of categories are hard to establish but, in the long run, they become essential to the decision-making processes.

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PutSleepApneatoBed +0 points · about 1 month ago

BTW, I am the author of the “How to Get your Brain Back” blog on this site.

A few months after starting completely adherent and successful treatment, when my blackouts and seizures didn't immediately abate, I sought help from a neurologist and went through three days of neurological testing with a neuropsychologist.

I KNEW what was wrong (Sleep Apnea), but I wanted help in “getting my brain back.” Well, I was barking up the wrong tree. Despite my telling them at great length about my SA diagnosis and treatment , the neurologist and neuropsych apparently thought I had EOAD. Without my knowledge or consent, the neurologist did the genetic testing for that. (In fourteen states that is illegal, and in the other thirty-six, it is merely completely unethical- Why? Because it could make your entire family uninsurable.) and then stonewalled me about giving me the results.

Net/net I got NO help whatsoever with getting my brain back, and once I figured out what had happened had to fight to get the test results which I eventually did, of course, because EVERYTHING leaves a financial trail (the lessons of Iran-Contra—follow the money) And as I knew it would be, it was negative for the genetic bases for EOAD. (Had it been positive, there would have evidence of that in the family tree, and that, Thank God, didn't exist.)

But the point is, that by their mid fifties. long term untreated SA looks pretty much like EOAD from the standpoint of neuropsych testing. And it wouldn’t be the only time that someone with long term untreated SA had been mistaken for someone with EOAD.

Or maybe, as a neurologist/sleep doc turned SA patient once told me: the people with AD are the SA patients who survive long enough. The rest die of CVD causes earlier on-hence the gender differential in AD.

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

That article was quite inspiring back when I was still hoping to make some changes.

I linked it to this thread a few years back.

cpap-is-not-the-solution

I think I first read your article when I discovered it on a blog by RebeccaR.

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mathewstok85 +0 points · about 1 month ago

I think I shoud read the blog.

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

Sierra Sierra Sierra.

You have my admiration and respect and this forum owes you BIG TIME for your technical expertise and vigilance but .......

I do like to stir.

So here goes:

CPAP therapy has many adverse effects!

It costs time!

It costs money!

It causes trauma!

It disrupts my sleep!

It limits my lifestyle!

It causes embarrasment!

It even causes flatulence!

It interferes with my sex life!

It contributes to global warming!

It forces me to learn dozens of unwanted acronyms!

It has me pacing the floor late at night reading the tea leaves in my coffee cup!

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Sierra +0 points · about 1 month ago Sleep Patron

When we travel I am always amazed as to how many people use a CPAP. The machine is bulky to pack in luggage, and you don't want to risk having them lose it, so most take advantage of the ability to bring it as a free carry-on item. That means you see others around you taking it out of the bag at security for inspection. And you see it piggybacked on their carry on luggage. It is easy to tell who is using a CPAP when in the boarding lounge. It is a surprisingly higher number than I would have thought.

Yes, it is a bit of a pain to bring it along when traveling, and when at home, keep it supplied with water. I buy the reverse osmosis water in bulk from the hardware store in reusable water containers to save all the plastic trees from getting cut down...

All in all, I would prefer not to have apnea and a machine to treat it. But, I think of all the people that probably do have it and have never been diagnosed, and those who would not be able to afford the machine even if diagnosed. I consider myself one of the fortunate ones...

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

Yes, I do feel sorry for those plastic trees.

You rarely see one around here anymore.

Our grandchildren won't even remember what they looked like.

I do my bit to save a few.

I use that splashy stuff in the tap.

I know it's not real water but it seems to work.

Maybe that's why I have so much trouble with my CPAP.

I've never unpacked a CPAP at the airport but I am going to miss the old S9, because it had a good strong carry bag, which was the perfect size to add extra cables and chargers, medications, spare glasses, a few small gifts, assorted paperwork, a bunch of expansion drives, a decent-sized Ipad, a big fat puzzle book, that half-eaten elephant and ...................................... :)

Those CPAP comparison charts never show the stuff that really matters.

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Sierra +0 points · about 1 month ago Sleep Patron

I do use tap water when on holidays and it is not convenient to get distilled or RO water. I don't think it does your CPAP any harm because the minerals in the water are essentially trapped in the water reservoir. It does take more time to keep the reservoir clean. Vinegar helps a lot in cleaning.

The A10 travel case is a step up over the S9 case. If you get a chance to get one, grab it. I ended up with two A10 cases somehow and my wife grabbed it, and modified it a bit to use it with her S9 machine.

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

Oh I hadn't considered that there might be a real carry case out there.

A10 carry case

The bag that came with my A10 is like a few Chux and a zip held together with Craggle. Probably made from plastic trees. I think the better bags get assigned to the onions.

So now I have to spend even more money on my accursed CPAP! :(

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Sierra +0 points · about 1 month ago Sleep Patron

The nice part of the A10 travel case besides the more compact shape is the strap across the back with Velcro in the middle. It lets you slip the whole case over a two bar carry on handle so it stays there. A one bar handle carry on does not work nearly as well as the case just spins around once it is attached.

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

A good point Sierra, and another vital factor that the comparison charts don't include. :)

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

They do seem a bit dull though Sierra. Hardly a fashion statement. I was hoping there would be something out there that wouldn't clash with my new Resmed travel gear. Hose Bags

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Sierra +0 points · about 1 month ago Sleep Patron

Wow, but not needed. The hose fits in the travel bag, unless you want to show it off with a flashy bag!

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

Maybe I can just add some ribbons!

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Sierra +0 points · about 1 month ago Sleep Patron

"Maybe I can just add some ribbons!"

Or, helium balloons....

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Biguglygremlin +0 points · about 1 month ago Original Poster Sleep Enthusiast

Hydrogen balloons are much lighter and, eventually, hydrogen will be available at the local gas station.

It's got a bad rap when it comes to air travel though. :O

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