[Treatment] Defeating bumper belt -- more or less over time? (CPAP Alternatives)

[Don in Austin]

My responses below in green.

...
DreamDiver said "For obvious reasons, there aren't many people on this forum for whom CPAP failed." Maybe not, but there are an awful lot of CPAP machines out there that haven't been activated for a long time!
RonWessels said this.

OOPS!

DreamDiver said: "Ron asked why it doesn't work for you, but you avoided responding, rather wishing to talk more about your success." I did not elaborate because I naively hoped to have my statement that CPAP does not work for me accepted at face value and receive assistance with enhancing a program that I feel is more promising for me.

If your oximetry looks good and you are comfortable, then as I said, you're one of the few people for whom the dental device works. That's good.

...
May have to find an "I hate CPAP" forum for insight on this.

Actually, it would help more for someone like you to stick around. You've obviously got something worth talking about that is working for you, and while skepticism can be healthy, numbers don't lie. If your oximetry looks good throughout the night when you're off your back using the dental device, then it pays to find a way to stay off your back, especially if you can't stand CPAP. Frankly, my oximetry is about as good as yours even with CPAP and an AHI averaging about 0.7 monthly.

I know of one gentleman who uses a back chock to keep off his back with CPAP because he can lower his pressure to 9 from 17 if he never sleeps on his back. He wears a small back pack with shoulder straps that snap together at the chest and waist with a 9-inch diameter kid's bouncy ball secured in the center of his back pack. Another guy uses tennis balls sewn into the back of his shirt. I've also heard of people using various products by Rematee (easily found at various popular non-medical online distributors). They make one snore belt that's got shoulder straps that may perhaps help to reduce belt torque during sleep.

It might be interesting if you did a sleep study with your preferred back chock solution while using the dental device, but since you're satisfied, I'm guessing that's not likely to happen soon. I wonder though if you did get a study, whether it would satisfy some health-insurance protocol, allowing you to reduce your overall health insurance cost since you would be technically no longer needing cpap.

This is "apneaboard.com" not "cpapboard.com". That would include you. I suspect you're in good company here.

Thank you for your response! I am currently using the Zzoma belt -- FDA approved and required a prescription. It gets defeated when it slides sideways. I have ordered the latest Rem-A-Tee with straps.

I doubt Medicare will pay for a 3rd sleep study any time soon, and I don't want to do it on my own dime. A compromise might be a home sleep study with the box and all the sensors, probes up your nose, ekg patches, etc. etc. -- more than oximetry even if less than a sleep-lab study. But I have a problem with basing anything on just one night because my experience with the pulse/oximeter is there are good nights and not-so-good nights and a single study is not truly definitive.

I will stick around. The latest version of the Rem-A-Tee was backordered but should ship soon if it hasn't already. I will report on how that works. If I manage to defeat it there are other devices on the market or improvised solutions.

[SuperSleeper]

Don, keep in mind it was you who has (2 times now) suggested that you might find better answers on another forum. No one here has suggested or implied that they want you to leave. We'd like you to stay, but most of the folks on Apnea Board tend to speak their mind and tell it like it is, and do not tell others what they want to hear in order to "make peace". Personally, I hate to see it when a member pulls the "Poor me, I'm not welcome here" card. I want all sleep apnea patients to participate here.

Again, I stand by my statement that much of the hype about oral devices is based upon subjective patient experiences, not cold, hard independent unbiased clinical studies that have been conducted with a large sampling of patients.

Everything you've offered here as proof of oral devices and positional therapy being equal to CPAP is based upon very subjective criteria for one person only (you). Not solid science.

If you're upset that folks have questioned why you stopped CPAP, please don't be. They are valid questions, given the fact that many, many people give up way too early on CPAP, and our more experienced members have helped thousands of folks stick with CPAP, overcoming a lot of problems in adapting to it. So far, all we know about your CPAP problems is your statement that you couldn't sleep through the night with CPAP. We'd like to delve into the issues that caused your problems with CPAP, but you seem bent on not discussing it for some unknown reason.

As DreamDiver implied, you may be the 1 OSA patient in 10,000 where an oral device actually works as effectively as CPAP. If so, good for you. But that does not mean that oral devices should be promoted to all OSA patients en masse, especially when there's no solid data to back it up.

I've said enough already. Thanks for listening and good luck.

[Don in Austin]

Don, keep in mind it was you who has (2 times now) suggested that you might find better answers on another forum. No one here has suggested or implied that they want you to leave. We'd like you to stay, but most of the folks on Apnea Board tend to speak their mind and tell it like it is, and do not tell others what they want to hear in order to "make peace". Personally, I hate to see it when a member pulls the "Poor me, I'm not welcome here" card.

There is no "poor me" about it. Just an observation based on the fact that I was receiving response to something other than the question I had posed. Kind of like asking about car models and being told cars are wrong and you should use a bicycle and public transportation instead -- which I actually somewhat believe even though I own a vehicle repair shop -- but its not how I would respond to that question. I do understand that responding to something other than what I was asking about was with the best of intentions, and my feelings about it consist of very mild annoyance and some degree of amusement. I am happy to see a couple of posts recently that do relate to positional therapy.

I want all sleep apnea patients to participate here.

Again, I stand by my statement that much of the hype about oral devices is based upon subjective patient experiences, not cold, hard independent unbiased clinical studies that have been conducted with a large sampling of patients.

Everything you've offered here as proof of oral devices and positional therapy being equal to CPAP is based upon very subjective criteria for one person only (you).

Well, I am not telling anyone else what to do, I am looking for what works best for me. I am curious about something, when you say "oral devices and positional therapy" are you referring to each one standalone or the combination vs. CPAP? Big difference.

To set the record straight, I never claimed an oral device works as well as CPAP. Perhaps it does in some cases, but I do not make that claim -- not for me and not for anyone else. My apnea is highly position dependent with a sleep study to back that up. Does the sleep study count as "solid numbers?" My claim is that the oral device has a significant impact, staying off my back has a significant impact and that TOGETHER my experience has been better than with CPAP. This is an important distinction.

I attempted to post links to the studies I have read about oral device efficacy and I had to delete them as they caused rejection of my post.

Not solid science.

I am using the best science and data available to me for my situation. No it is not perfect -- it is the best I have.

If you're upset that folks have questioned why you stopped CPAP, please don't be. They are valid questions, given the fact that many, many people give up way too early on CPAP, and our more experienced members have helped thousands of folks stick with CPAP, overcoming a lot of problems in adapting to it. So far, all we know about your CPAP problems is your statement that you couldn't sleep through the night with CPAP. We'd like to delve into the issues that caused your problems with CPAP, but you seem bent on not discussing it for some unknown reason.

There is not a whole lot of point in discussing it, because at this point I have relinquished the machine and am sleeping much better than when I attempted to use it. But the short story is despite trying all manner of masks and experiments with fit, I was unable to sleep due to discomfort and/or leaks. A comfortable leak free fit was so tenuous as to be gone the moment I moved my head. Repeatedly finding myself so wide awake as to have to go watch crap on TV before I could even try to go back to sleep seems like a pretty compelling argument against CPAP use in my case. I am known among my peers as a stubborn person who does not let go of something easily and it is in that spirit that I attempted to use a CPAP machine -- actually TWO CPAP machines. Perhaps you are familiar with a dental device having a rod projecting out through your lips upon which is attached a holder for nasal pillows? The problem with this CPAP/dental device combo attempt was repeatedly waking up fighting air blowing out through my lips.

As DreamDiver implied, you may be the 1 OSA patient in 10,000 where an oral device actually works as effectively as CPAP. If so, good for you. But that does not mean that oral devices should be promoted to all OSA patients en masse, especially when there's no solid data to back it up.

I am not promoting oral devices to all en masse. You are knocking down a strawman. I have been discussing my situation and experience only. Please re-read my story of what a blessing CPAP has been for my wife's sleep quality, (and mine by extension.)

Perhaps 1 in 10,000 is hyperbole?

I've said enough already. Thanks for listening and good luck.

And thank you for listening.

Don

[SuperSleeper]

There is not a whole lot of point in discussing it

I certainly agree that it's pointless to discuss mask leak solutions with you, as you already have already made up your mind not to pursue CPAP further. That's obvious.

Don't worry, I'll leave your thread alone from now on and not try to convince you.

[courtney123]

Don -

For what it's worth I am/was a mouth breather and trained myself not to do it overnight so I can use a nasal pillow.
I assume it works because I don't wake up with a dry mouth 6 weeks into CPAP therapy.
I can't tell you how I did it, it just happened after a couple of weeks of scolding myself in the morning.

I am an engineer and this will stop you from sleeping on your back if you're willing to try it.
Let's assume you sleep on the left side of the bed (looking from the foot of the bed).
This will require you to sleep on your right side. Attach a strap around your left arm a couple of inches below your shoulder.
A heavy twine of light rope goes from the strap to underneath your mattress.
You may have to attach it to a thin board. The idea is anchor it so if you start to roll onto your back, you're going nowhere. You may go to your stomach but not your back. It'll probably wake you up but you'll get used to it in time.

If you sleep on the other side, then you're on your left side and the strap is on your right arm.

Kinda nuts? Yup, but it's sound from an engineering principle.

[jgjones1972]

Hi Don,

I'll start by saying that I would much rather be giving you tips, tricks and pointers on how to manage leaks with a Full Face Mask; but that dead horse has been beaten enough. I just feel I would be being remiss if I didn't mention it and I am pretty confident that I and some others here could provide knowledge from our own personal challenges that could help you get an FFM under control. I won't mention this again unless you ask about it though.

On to your question about mechanical aids to prevent sleeping supine. I am going to take a slightly different approach and this may also be a little off topic from what you are looking for; but, I think it might be important for you to try to address WHY you find yourself seeking the supine position in your sleep. If there is an underlying cause for this and you find yourself consistently trying to defeat mechanical aids to prevent sleeping supine; then I suspect that IF you do find an aid to prevent supine sleeping, then you will be subjecting yourself to considerable discomfort - which may also be very detrimental to healthy sleep (i.e. you may reduce O2 desaturations, but find yourself getting very little Delta Wave and/or REM sleep, which I am convinced is also harmful to long-term health).

I'm thinking that if you could figure out and correct whatever it is that causes you to find it desirable to roll onto your back, then it would be far easier to train yourself to sleep on your side and would probably be much better for you in the long run.

My first thoughts are: Do you have any circulation problems? Are you on a low-dose aspirin regimen? When do you take it? How good is your mattress? What kind is it? Have you tried other mattress types? Do you have any back problems? Hip problems?

Edit: Also, have you tried sleeping on your side with a pillow between your knees or with a body pillow?

Instead of forcing yourself to accept sleeping on your side even though you obviously find it uncomfortable, what can you do to make sleeping on your side comfortable?

Also, have you ever tried sleeping upright in a recliner? I know it sounds strange and probably isn't something you would want to consider on a long term basis; but would be interesting to know the oximetry results from one night; because, for many, this is the best sleeping position to reduce obstruction of the airway.

[Don in Austin]

I appreciate the thought-provoking post. it is not off-topic to me at all.

I do not have an answer for what cause me to roll on to my back. Left to my own devices, I might spend 50% of the night on my back. I don't sleep on my left side much because of a bad rotator cuff. Nor do I sleep on my stomach.

No low dose aspirin. I am 67, close enough to ideal weight. About four years ago I got serious about fitness and do two gym training sessions/week and ride a bicycle HARD seeking out steep hills approx. 100 miles/week. I hang with intermediate riders, 25 year-old triathletes, etc. I have done a bunch of core work and been able to drop the bars on my bikes lower and lower for a more aggressive riding position with no back problems. I have no circulation problems that I am aware of. Moderately high total cholesterol, but that includes very high HDL, with very low triglycerides and low C-Reactive protein. So I think my overall hearth health is pretty good. No statins, blood pressure meds -- NO WAY! I probably have residually compromised lungs from 5 packs/day decades ago. No hip problems.

Interesting that you mention the recliner. I often nap in a recliner, but have never tried a full night in it.

The mattress is firm and feels comfortable to me.

I do suffer from restless legs (rarely) and PLMD, less rarely. I doubt a pillow between my knees would stay there long. I take low-dose gabapentin for the PLMD but have reservations as to it serving any purpose and am considering discontinuing it. (Will need to be done gradually)

Since getting the breathing under better (but not ideal) control I am dreaming more vividly -- I think that means more REM sleep? I hope so.

Well, there is my health profile summary with maybe more than you wanted to know

Thanks again and looking forward to your comments.

[courtney123]

I am 67, close enough to ideal weight. About four years ago I got serious about fitness and do two gym training sessions/week and ride a bicycle HARD seeking out steep hills approx. 100 miles/week. I hang with intermediate riders, 25 year-old triathletes, etc

Wow!
I'm impressed!
Good for you.
10 minutes on an exercise bike wears me out.

[Don in Austin]

I am 67, close enough to ideal weight. About four years ago I got serious about fitness and do two gym training sessions/week and ride a bicycle HARD seeking out steep hills approx. 100 miles/week. I hang with intermediate riders, 25 year-old triathletes, etc

Wow!
I'm impressed!
Good for you.
10 minutes on an exercise bike wears me out.

So it would have for me when I was young. I am trying to take better care of myself now.

[Don in Austin]

I am one who absolutely can not tolerate the C-Pap machine. I have an oral jaw advancement device custom fitted by an expert sleep dentist, which bothers me hardly at all. I am 67 years old and my apnea is medium/severe. When I can stay off my back, the numbers and sleep quality are good. The problem is, I am extraordinarily resourceful at defeating a backpack filled with clothing, tennis balls, etc. etc. Currently I am using the Zzoma bumper belt, but have ordered a Rem-A-Tee. I manage to slide the Zzoma around and sleep on my back at times and this shows up a lot in the numbers I track with a pulse oximeter.

What is the experience of bumper belt users?

Over time you train yourself not to sleep on you back? This is what my sleep dentist told me.

Or, over time, you learn to defeat any kind of anti-supine device?

This is important, because I don't hear ANYTHING good about any surgical options that might apply to me, and I gave CPAP the good old college try and then some. When I can stay off my back, I have gone an entire night with a total of less than 20 seconds of O2 under 90%, and I will take that.

Thanks in advance for your experience.

Here is my update -- yesterday the Rem-A-Tee belt arrived. It has three pockets on the back that take inflatable pillows. The pillows are nice and comfortable and I kept sleeping flat on my back on top of them! But the shoulder straps are good and keep the belt from rotating as was the problem with the Zzoma. Occasionally my wife nudged me and I went to my side. With that help I stayed above 90% oxygen the whole night with the exception of two brief events where I dipped to 89. But, clearly, the belt will not work for me as provided. I put tennis balls in the pockets and checked that this morning and it holds promise. We shall see what happens tonight and of course long-term. I have seen some oximeter postings on another forum and feel lucky that my OSA is mild in comparison to what some are going through, and still feel positive about the dental device/positional approach FOR ME. Just to repeat, I am NOT anti-CPAP in general -- it sure has been a blessing for my wife's condition. And yes, I know the pulse oximeter readings are not ideal comprehensive data, but I think they give me trends. At my next appointment with the sleep doc I highly respect, I will see about a home sleep study with all the patches on the skin, sensors up the nose, etc. I don't think another lab sleep study is in the cards at this time.