CPAP is a patch, not a cure...

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

Post by zoocrewphoto » Fri Feb 15, 2019 7:19 pm

I sure don't see who vitamins and gut bacteria are going to widen my airway. Perhaps help in other ways? Maybe.

But I have the classic PHYSICAL signs/causes of sleep apnea:

small jaw/chin (teeth removed as teenager)
scalloped tongue
narrow airways (I fail all airflow tests)
airways worse with allergies
airways worse with asthma
mom has sleep apnea
grandmas on both sides had sleep apnea


Bacially, I was doomed to get obstructive sleep apnea just from my genes.


Do vitamins make a difference in our health? Sure. In our sleep? Sure.

Last year, I was sleeping terribly, mostly because my legs were twitching, which was unusual. I was also waking up with what I thought were asthma attacks, but my medicine wasn't working. I went to the doctor with a list of everything that was bothering me. She immediately tested me for iron, and I was very low. Within a week on iron, most everything had improved noticeably.

So, I can totally understand that other things can and do affect our sleep. But that doesn't mean those issues are sleep apnea or related to sleep apnea. Those treatments don't cure sleep apnea or replace cpap. My low iron had nothing to do with my sleep apnea. Even my gasping in the middle of the night with low oxygen was NOT sleep apnea. It was my blood not carrying enough oxygen.

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

Post by grayghost4 » Sat Feb 16, 2019 9:56 am

For anyone interested in vitamin D3 information :

https://www.youtube.com/watch?v=jeLC_b5gDUM
If you're not part of the solution you're just scumming up the bottom of the beaker!

Get the Clinicians manual here : http://apneaboard.com/adjust-cpap-press ... tup-manual

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

Post by HoseCrusher » Sat Feb 16, 2019 9:40 pm

jnk... wrote:
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.

...

jnk... I think you are overreacting...

The discussion is not about life and death issues. It is about improving the quality of sleep to the point where you wake up fully refreshed, restored, and pain free. This puts you in a position where you can jump out of bed and greet the day.

If you were able to add a CPAP machine to your night and accomplish this, fantastic. Keep up the good work and bask in the realization that you have arrived.

Others may not have such a pivitol experience and may need to work a little harder. The extra work may involve CPAP, balancing body biochemistry, surgury, and who knows what else, but the goal is to facilitate the body functions so the body can attempt to heal itself.

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

Post by HoseCrusher » Sat Feb 16, 2019 10:57 pm

JMB73 wrote:
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. :)
JMB73, Thank you for sharing your experience. I think it is totally valid and serves as a data point.

As a result of your experience, I purchased Dr. Gominak's workbook. It seems her regieme is a little different than what you did.

She appears to be expecting positive results after being on the program for 9 - 12 months. During that time you conduct a daily review of sleep quality and pain amount, frequent blood tests to track D levels over time, and check in with her on results every 3 months.

It appears you were 3 months into a 12 month journey...

I don't think a sleep study is the best measurement of this but I am courious if your sleep study indicated ample deep wave and REM sleep?

Now that you are on CPAP are you finding your sleep restful and restorative and are you waking up pain free?

As far as I can tell... Dr. Gominak's practice only includes a couple of thousand people and her sleep experience only covers about 10 years. Dr. Park was very interested in her approach and it sounds like he is incorporting some of her methods into his practice. In addition there are a few functional medicine doctors that are incorporating her ideas into their practice. Overall I would say this is a new and emerging approach to sleep disorders.

My difficulty with Dr. Gominak's approach is that I like to have numbers to base decisions on. Feelings ultimately rule, but I like to direct my moves based upon numerical data. If I change my biochemistry do I see an improvement in the amount of time spent in restorative sleep? I may still have joint pain upon wakening, but if I can see that my restorative sleep duration has increased, I can feel bad knowing my body is putting extra effort into repairing.

PSG is the gold standard but that is a little beyond my technical ability and cost at this time. The Oura ring may be a more reasonable substution, but it starts at $300 and I am not sure it is tough enough to withstand my active lifestyle. I have a Fitbit but its data is limited. The search continues...

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

Post by sleepy-programmer » Sat Feb 16, 2019 11:44 pm

zoocrewphoto wrote:
Fri Feb 15, 2019 7:19 pm
But I have the classic PHYSICAL signs/causes of sleep apnea:

small jaw/chin (teeth removed as teenager)
scalloped tongue
narrow airways (I fail all airflow tests)
airways worse with allergies
airways worse with asthma
mom has sleep apnea
grandmas on both sides had sleep apnea
Very similar story here friend. Have had asthma since I was a kid. The airway space in my sinuses is pretty damn tiny. Allergic to trees and dust. Also had teeth removed as a teenager, and I'm grateful you mention it given the conversation in my own thread about that same thing. Heh.

I'm seeing an orthodontist next week. He may be able to help widen my bite up again.

I will say, anecdotally, I feel like I have more consistent energy when I take vitamin d3. Seasonal depression is a thing. I haven't cracked why my symptoms are worse in the winter and better in the summer, but maybe sunlight is part of it? Socializing is probably part of it. I'm more active in the summer, and I feel better, so it's easier to be more active. IDK. But I started taking it because my doc said my d3 levels are low. Not because someone said it could help my sleep apnea. There are surely *lots* of small optimizations we can all probably be making to make sleep apnea-- and everything else-- easier. Exercise, diet, sleep hygiene, etc.

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

Post by Muse-Inc » Sun Feb 17, 2019 5:12 am

sleepy-programmer wrote:
Sat Feb 16, 2019 11:44 pm
...Seasonal depression is a thing...
SAD light from Amazon (get one with 10K lumens), inexpensive now (bought mine 2014). Bounce off ceiling when eating breakfast (try for 20 minutes). Helps normalize sleep (cirrcadian rhythms/day-night) cycles, improves sleep latency (time to fall asleep), staying asleep all night, and helps getting restful sleep. Been using it and it helps. It does not affect my need for my APAP :lol:

My sleep doc after viewing my labs laughingly said I had a chemical stew circulating instead of blood and not to make any medical changes until I'd been using my machine for a year. He explained that OSA so distorts our biochemistry that it can take that long for some people's labs to return to normal levels -- he was right, about a year later almost all lab values were in the normal range (blood pressure took another 6 months to drop enough for me to begin reducing those hated meds).

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

Post by JMB73 » Sun Feb 17, 2019 11:02 am

HoseCrusher, again, by all means, keep taking D and vitamins and see if it helps. The great thing about it is that it's not expensive. I'd never heard of the Oura ring. The name is a huge turnoff, haha, but looking into it, maybe it's legit? Just starting to research it. Would be nice to track my sleep once I start trying CPAP. Thanks for mentioning it. Oh, but be careful with taking the amount of B vitamins she recommends as that is big time megadosing, and while many people think that you can take as many B vitamins as you want and it's totally harmless, that's not actually true.

I think I did enough of an experiment to prove that her main point is not true, at least in my case; and, again, there seems to me zero example of people who have actually been cured (in terms of bad sleep) by this protocol. Other than these supposed thousands of patients of hers, which we just have to take her word for. The point is that I do not have whatever "pain" she is talking about waking up without that can take 12 months to achieve. I'm talking about restless sleep, and getting better sleep. She said that it can take months or years of good sleep to start healing. I guess she's talking about the pain there again. But the point is the good sleep. She says that your sleep will improve with increased D, specifically once you reach a level of 60. I did that, and my sleep did not improve at all. So, I think you're mixing up some things here. That's okay, though, as it's all rather complicated. But the point that I am making is that there is absolutely zero proof, let alone even a shred of actual evidence out there, that her theory holds any water at all. If I'm mistaken, please provide some links. So what that people are incorporating her ideas. What the heck that that prove? :)

Anyway, maybe increasing D will help some people get better sleep. I doubt it, but they can certainly try! I saw a couple small studies but these were with people whose D was under 30. Anyway, her theory proved untrue in my case, because I achieved the level of D she said would improve sleep, and it did not improve sleep. Simple as that. You may not see it, but you're acting like a "believer," and that's not an insult, as I've been there myself...wanting something to work or be true. But that's why I experiment and actually do things to see if they work. Sounds like you're the same. But I think it is unwise to dismiss my experience as a mere "data point," given that I did exactly what she said to do, attained the blood levels of D she said would improve sleep, and it did not improve sleep. And, again, where is a single example of someone for whom this has worked? In all the years she's been peddling this idea?

Lastly, it's my understanding that she does not have a practice anymore, and that she makes money now selling this theory of hers, via lectures, and charging people for brief video chat sessions.

I hope that if you continue this protocol, you will post again once your blood level of D reaches 60 and let us know if your sleep has improved. I truly hope it does, believe me. But, for me, I've proven to myself that it's bunk in my personal case (and, again, apparently everyone else's, from the utter lack of successful examples).

Best wishes. :)

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

Post by ChicagoGranny » Sun Feb 17, 2019 1:35 pm

JMB73 wrote:
Sun Feb 17, 2019 11:02 am
for me, I've proven to myself that it's bunk in my personal case (and, again, apparently everyone else's, from the utter lack of successful examples).
There are some studies that show very low levels (<12ng/mL) of Vitamin D can contribute to existing pain. To state the obvious, pain can interfere with sleep. If the levels of vitamin D can be raised to what is considered normal (50 ng/mL), the pain may abate somewhat and therefore sleep improve.

Gominek is somewhat of a quack. HoseCrusher's posting history shows he is strongly attracted to quackery.

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

Post by JMB73 » Sun Feb 17, 2019 1:41 pm

ChicagoGranny wrote:
Sun Feb 17, 2019 1:35 pm
JMB73 wrote:
Sun Feb 17, 2019 11:02 am
for me, I've proven to myself that it's bunk in my personal case (and, again, apparently everyone else's, from the utter lack of successful examples).
There are some studies that show very low levels (<12ng/mL) of Vitamin D can contribute to existing pain. To state the obvious, pain can interfere with sleep. If the levels of vitamin D can be raised to what is considered normal (50 ng/mL), the pain may abate somewhat and therefore sleep improve.
I totally hear you. But, again, to try and be clear, I'm not talking about restless sleep caused by pain. I'm talking about restless sleep that isn't caused by pain. But, yes, what you're pointing out certainly makes sense, for that kind of situation.

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

Post by Mogy » Sun Feb 17, 2019 2:31 pm

Hi Hosecrusher,
Thanks for posting this. I have started watching some of her videos and reading her blog. It is very interesting.
Thanks
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Re: CPAP is a patch, not a cure...

Post by palerider » Sun Feb 17, 2019 2:54 pm

Mogy wrote:
Sun Feb 17, 2019 2:31 pm
Hi Hosecrusher,
Thanks for posting this. I have started watching some of her videos and reading her blog. It is very interesting.
Thanks
Speaking of people superglued to quackery...

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

Post by HoseCrusher » Tue Feb 19, 2019 10:28 pm

JMB73 wrote:
Sun Feb 17, 2019 11:02 am
HoseCrusher, again, by all means, keep taking D and vitamins and see if it helps. The great thing about it is that it's not expensive. I'd never heard of the Oura ring. The name is a huge turnoff, haha, but looking into it, maybe it's legit? Just starting to research it. Would be nice to track my sleep once I start trying CPAP. Thanks for mentioning it. Oh, but be careful with taking the amount of B vitamins she recommends as that is big time megadosing, and while many people think that you can take as many B vitamins as you want and it's totally harmless, that's not actually true.

I think I did enough of an experiment to prove that her main point is not true, at least in my case; and, again, there seems to me zero example of people who have actually been cured (in terms of bad sleep) by this protocol. Other than these supposed thousands of patients of hers, which we just have to take her word for. The point is that I do not have whatever "pain" she is talking about waking up without that can take 12 months to achieve. I'm talking about restless sleep, and getting better sleep. She said that it can take months or years of good sleep to start healing. I guess she's talking about the pain there again. But the point is the good sleep. She says that your sleep will improve with increased D, specifically once you reach a level of 60. I did that, and my sleep did not improve at all. So, I think you're mixing up some things here. That's okay, though, as it's all rather complicated. But the point that I am making is that there is absolutely zero proof, let alone even a shred of actual evidence out there, that her theory holds any water at all. If I'm mistaken, please provide some links. So what that people are incorporating her ideas. What the heck that that prove? :)

Anyway, maybe increasing D will help some people get better sleep. I doubt it, but they can certainly try! I saw a couple small studies but these were with people whose D was under 30. Anyway, her theory proved untrue in my case, because I achieved the level of D she said would improve sleep, and it did not improve sleep. Simple as that. You may not see it, but you're acting like a "believer," and that's not an insult, as I've been there myself...wanting something to work or be true. But that's why I experiment and actually do things to see if they work. Sounds like you're the same. But I think it is unwise to dismiss my experience as a mere "data point," given that I did exactly what she said to do, attained the blood levels of D she said would improve sleep, and it did not improve sleep. And, again, where is a single example of someone for whom this has worked? In all the years she's been peddling this idea?

Lastly, it's my understanding that she does not have a practice anymore, and that she makes money now selling this theory of hers, via lectures, and charging people for brief video chat sessions.

I hope that if you continue this protocol, you will post again once your blood level of D reaches 60 and let us know if your sleep has improved. I truly hope it does, believe me. But, for me, I've proven to myself that it's bunk in my personal case (and, again, apparently everyone else's, from the utter lack of successful examples).

Best wishes. :)
JMB73, there is nothing dismissive about being a data point. You are simply a person that didn't get the expected results.

Let me give you another example...

I have a group of friends. Some have sleep disorders. A couple of us use CPAP and see positive results. There are 2 that tried CPAP and stopped because it seemed to not help at all. They are data points. I am a data point. You are a data point. They are data points.

In the end we assemble all the data points we can find and try to put together the story of what is going on.

The question that I now have is what are you going to do? Do you go through life with crappy sleep and expect that is the "norm" for you? Or do you try the next step, track your sleep and find a solution?

I sincerely hope you are able to find a way to experience restful and restorative sleep.

In my case I have been aware of D levels for several years now. I recently have been waking up with minor pain in my knees and shoulders. In reviewing Dr. Gominak's information the suggestion was that I may be taking too much B. I cut back on the B and over a very short time now my pains have been eliminated. We will see if this continues.

I started off on CPAP about 10 years ago. My cartiologist suggested a sleep study while treating me for afib. I discovered that I had sleep disorders including sleep apnea. CPAP allowed me to eliminate O2 desaturations and that resulted in higher quality sleep. Vitamin and mineral targeted supplementation has allowed me to gain control over my heart rhythms to the point where my cardiologist has taken me off of all heart medications. At this point I am striving for the best quality sleep in an effort to repair years of damage to my body and greatly improve my quality of life.

I am also a data point. However, my data point has to do with pain and I seem to find improvement (at least over a short term) by following Dr. Gominak's recommendations. In my case, it works but I am looking at pain.

I now have 2 data points. Didn't work for you... Worked for me.

I think I understand why it worked for me, but the bigger question is why didn't it work for you...?

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

Post by Goofproof » Tue Feb 19, 2019 10:39 pm

Then there are data points that point the wrong way. Jim
Use data to optimize your xPAP treatment!

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

Post by Grace~~~ » Tue Feb 19, 2019 11:28 pm

JMB73 wrote:
Thu Feb 14, 2019 8:08 pm
and taking some vitamins (D is a hormone, FYI, not a vitamin)
This seemed interesting to *me*. Vitamin D is a hormone?

I know many woman, many of my friends are using hormones.
My oncologist said, "NO WAY".

So I suffer with my instant onset traumatic (surgically induced) menopause. Way way too early in life and nothing could be more "unnatural" than what I've endured ... and am still being subjected to ... never knowing *where to go from here*~~~

What "type" of hormone is vitamin D?

And also, is everyone running these tests through their doctor or are folks ordering the blood tests themselves?
Just curious.

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

Post by palerider » Tue Feb 19, 2019 11:39 pm

Grace~~~ wrote:
Tue Feb 19, 2019 11:28 pm
JMB73 wrote:
Thu Feb 14, 2019 8:08 pm
and taking some vitamins (D is a hormone, FYI, not a vitamin)
This seemed interesting to *me*. Vitamin D is a hormone?

I know many woman, many of my friends are using hormones.
My oncologist said, "NO WAY".

So I suffer with my instant onset traumatic (surgically induced) menopause. Way way too early in life and nothing could be more "unnatural" than what I've endured ... and am still being subjected to ... never knowing *where to go from here*~~~

What "type" of hormone is vitamin D?
"type"? it's a hormone. It's made by your skin, and part of things you eat.

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