CPAP is a patch, not a cure...

palerider · Post by **palerider** » Wed Feb 13, 2019 8:34 pm

jpop wrote: ↑
Wed Feb 13, 2019 7:33 pm
whereas CPAP has about a 40% compliance rate,

I usually hear around 50%, where are you getting 40?

SDBud · Post by **SDBud** » Thu Feb 14, 2019 4:15 am

HoseCrusher wrote: ↑
Sun Feb 10, 2019 5:22 pm
I found this neurologists perspective and experience with sleep disorders very interesting. If this is a cure, this gives some insight as to what it would look like.

https://www.youtube.com/watch?v=uj8FTWCb010

Well, THAT is one damned fool's opinion!!!

jpop · Post by **jpop** » Thu Feb 14, 2019 4:43 am

palerider wrote: ↑
Wed Feb 13, 2019 8:34 pm

I usually hear around 50%, where are you getting 40?

That was from the neurologist I visited. This was mentioned in the context of compliance according to the insurers, not the effectiveness of CPAP treatment.

mbutts4901 · Post by **mbutts4901** » Thu Feb 14, 2019 5:34 am

My 90 days of CPAP hell started because I thought that, by seeing a sleep specialist, I'd get more sleep. I went from 4-6 hours per night to taking 2-3 short naps per night. I wake up daily at 3 a.m. exhausted with a massive headache. The MD and the DME both say, "You just have to get used to it." I've spent thousands of dollars, switched doctors, switched masks, and I feel much, much worse that I did previously. CPAP is just not working for me. Yes, I'm still using it with 87% compliance.

I have read everything Dr. Gominak published, watched the videos, and also paid for a consult with her. Her theory makes sense to me. She doesn't sell vitamins, magic potions, etc., just provides coaching for a fee (which is about 80% less than my current sleep MD charges). She doesn't advocate stopping use of your CPAP at all. She's giving out the advice that she's used successfully in her neurology practice for years for thousands of people to help them get deep, restorative sleep.

I invested $130 in the consult and I'm trying her program. I paid $40 at my primary care physician's office for a D3 level blood test. Throw in the cost for two bottles of D3 and B5, and I'm at what I spent for my last mask. Pretty low risk.

I'll post again after a few weeks.

JayDee · Post by **JayDee** » Thu Feb 14, 2019 5:42 am

Okie-dokie!

: OkieDokie.jpg (30.64 KiB) Viewed 4139 times

mikevan10 · Post by **mikevan10** » Thu Feb 14, 2019 5:58 am

HoseCrusher wrote: ↑
Tue Feb 12, 2019 3:44 pm

ChicagoGranny wrote: ↑
Sun Feb 10, 2019 5:46 pm

HoseCrusher wrote: ↑
Sun Feb 10, 2019 5:22 pm
I found this neurologists perspective and experience with sleep disorders very interesting. If this is a cure, this gives some insight as to what it would look like.

https://www.youtube.com/watch?v=uj8FTWCb010
HC, if that video is like a lot of other things you are attracted to, it's quackery.
ChicagoGrannly, I am surprised that you believe improving REM sleep is quackery...

I disagree!!!

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 have 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...

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 ??

palerider · Post by **palerider** » Thu Feb 14, 2019 12:27 pm

jpop wrote: ↑
Thu Feb 14, 2019 4:43 am

palerider wrote: ↑
Wed Feb 13, 2019 8:34 pm

I usually hear around 50%, where are you getting 40?
That was from the neurologist I visited. This was mentioned in the context of compliance according to the insurers, not the effectiveness of CPAP treatment.

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

Tricky Wash · Post by **Tricky Wash** » 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.

Dog Slobber · Post by **Dog Slobber** » 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 have 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...

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

palerider · Post by **palerider** » 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?

grayghost4 · Post by **grayghost4** » Thu Feb 14, 2019 4:41 pm

I do understand that this is a Cpap Forum is sponsored by a company selling cpap related things and might not like supporting discussions of ideas that might cut into sales BUT….

If I were mbutts4901 or HoseCrusher or anyone else looking for better sleep (and I am looking for better sleep and help with Migraines ) I sure would not continue to post about it in this thread or on Cpaptalk, after the ridicule they have received.

I for one would like to continue to learn more about it ( I have set up an appointment with my headache Neurologist to get his advice and opinion.

So I guess those of us that want help with better sleep and better health will have to do it with PM’s or find another forum to continue the discussion.

JMB73 · Post by **JMB73** » Thu Feb 14, 2019 8:08 pm

FWIW, this was exactly what I tried before finally getting a sleep test and seriously considering CPAP. I read her website, made sense...I looked for studies...the only ones were her own papers, and her own practice. That was fishy. There seems to be an association between D and apnea, but interestingly, I read about a study somewhere that said some patients treated with CPAP for apnea see their D increase, meaning that the apnea is keeping your D down. I found that interesting.

Anyway, since it was only an investment of time and taking some vitamins (D is a hormone, FYI, not a vitamin), I figured I'd try it. My D was 28. I started taking 5,000 IU a day. Very quickly I developed mild tinnitus (which happened to me when I had tried increasing my D years ago). I found an RN online saying "It's not the extra D, it's because you need more magnesium." Okay, fine, even though I eat a lot of magnesium in my very healthy diet, I started supplementing with magnesium, and then some extra K, because they all need each other (it's a rabbit hole this vitamin thing...). I did this for two months, and retested. My D was 50. My sleep had not improved at all. I continued for another month, which logically would bring me to about 60.

I can tell you this: It made no difference at all to my sleep. I did not sleep even a little better as a result of raising my D. Which is why I continued to wonder about apnea and so forth and got the sleep test. But my point is that I did this thing she's talking about, very scientifically, and it did nothing. YMMV and all that, and I was initially excited about what she was talking about, but I think it's kind of bunk. Feel free to try it, though. Take D supplements, raise your D (make sure to get your levels tested though), and see if it helps. But if what she's saying were true, there would be a lot more out there about this supposed cure for apnea and all sleep problems, you can be sure about that, regardless of how much one might think Big Pharma controls.

Anyway, just thought I'd share my personal experience with this. Personally, I'm really hoping CPAP helps in my case, because I've tried/done/explored pretty much everything else, other than pharma drugs, which I really don't want to mess with.

grayghost4 · Post by **grayghost4** » Thu Feb 14, 2019 8:23 pm

I would not suggest that anyone stop using their cpap ..... I am not going to stop using mine.
I do appreciate your experience .... and if you need cpap, pills are not going to replace it.
I don't think that the video suggests to not use a cpap if you need it, but to supplement it.
I do wish you well with your sleep test and cpap use

HoseCrusher · Post by **HoseCrusher** » Thu Feb 14, 2019 9:05 pm

JMB73 wrote: ↑
Thu Feb 14, 2019 8:08 pm
FWIW, this was exactly what I tried before finally getting a sleep test and seriously considering CPAP. I read her website, made sense...I looked for studies...the only ones were her own papers, and her own practice. That was fishy. There seems to be an association between D and apnea, but interestingly, I read about a study somewhere that said some patients treated with CPAP for apnea see their D increase, meaning that the apnea is keeping your D down. I found that interesting.

Anyway, since it was only an investment of time and taking some vitamins (D is a hormone, FYI, not a vitamin), I figured I'd try it. My D was 28. I started taking 5,000 IU a day. Very quickly I developed mild tinnitus (which happened to me when I had tried increasing my D years ago). I found an RN online saying "It's not the extra D, it's because you need more magnesium." Okay, fine, even though I eat a lot of magnesium in my very healthy diet, I started supplementing with magnesium, and then some extra K, because they all need each other (it's a rabbit hole this vitamin thing...). I did this for two months, and retested. My D was 50. My sleep had not improved at all. I continued for another month, which logically would bring me to about 60.

I can tell you this: It made no difference at all to my sleep. I did not sleep even a little better as a result of raising my D. Which is why I continued to wonder about apnea and so forth and got the sleep test. But my point is that I did this thing she's talking about, very scientifically, and it did nothing. YMMV and all that, and I was initially excited about what she was talking about, but I think it's kind of bunk. Feel free to try it, though. Take D supplements, raise your D (make sure to get your levels tested though), and see if it helps. But if what she's saying were true, there would be a lot more out there about this supposed cure for apnea and all sleep problems, you can be sure about that, regardless of how much one might think Big Pharma controls.

Anyway, just thought I'd share my personal experience with this. Personally, I'm really hoping CPAP helps in my case, because I've tried/done/explored pretty much everything else, other than pharma drugs, which I really don't want to mess with.

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.

grayghost4 · Post by **grayghost4** » Thu Feb 14, 2019 9:17 pm

@ JMB73

I sure would get a sleep test, and a cpap if you need it.

I don't think her video suggested not to use a cpap if you have sleep apnea!

CPAP is a patch, not a cure...

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