My Therapy Thread

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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jlsmithseven
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My Therapy Thread

Post by jlsmithseven » Mon Dec 19, 2022 9:22 am

So, I've renamed this thread so I don't have a million threads out there and I can learn from my setting changes. This was the quote from RobySue1 a few days back.
Since aerophagia is your problem, I think I'd be less inclined to tape right now. My own advice is to go back to a min pressure of 8cm (ramp up from 7cm only if you need to), and for the time being cap the max pressure at 8.6 for several days since you say that aerophagia is an issue when the pressure gets above 9cm. Yes, your AHI is going to take a hit for a while. But you need to identify how much pressure your stomach can take and then make some decisions about finding a working compromise between the pressure needed to keep the OSA under control and the pressure needed to keep the stomach happy. It may well be the case that you will feel and function better with an AHI that is usually between 2 and 3 and no aerophagia instead of an AHI < 2 and lots of aerophagia.
At that point in time Aerophagia was my biggest issue because I had my machine set to 8-10 pressure, using a 7 autoramp. My pressure was staying at 9 or above and since I was mouth taping, the air had no where to go. Even when I was not taping, the air seemed too much. Capping the air at 8.6 has been helping my Aerophagia very much.

After plugging in this recommendation from RobySue1, I had 2-3 nights in a row that were excellent. I've now reverted back to those settings, with a Standard response rate. Everything seems to be doing just fine and I will post on this thread if I have any issues with anything. Thank you Dog Slobber for recommending this. I will run these settings for a month and touch nothing so I can collect some data.

I think my next goal is to eliminate EPR or at least try EPR 1. I've changed from level 3 to 2 (about 3 weeks back) and it's been a good experience since. So I will continue running 2. I think my thought process behind this is because it keeps my pressure more stabilized during the night.
Last edited by jlsmithseven on Tue Mar 21, 2023 2:58 am, edited 3 times in total.

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Jlfinkels
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Re: Just about to quit cpap after a year , need advice

Post by Jlfinkels » Mon Dec 19, 2022 9:43 am

I felt the same way at a few points. Ready to toss the bloody thing in the bin. I checked into dental appliances as a good mate has had very good success with the Somnodent (which cost him $4000 out of pocket).

However, I stuck with it and with the help of a few smart folks here and on ApneaBoard figured it out, to a degree. Still some very good and very bad nights, but when I sleep without it I can tell the difference when I put it back on. I’m coming up on 3 years with it, so I thought it strange there were still tweaks, but that seems to be the case for many based on both forums. Even after years of use some still have to make small tweaks on occasion.

There’s no magic. No pixie dust. You are training your body, which takes a lot of time. You can solve the problems, but you have to really want to do so. The frustrating thing to me is the feedback loop is at the expense of a nights sleep. One change, sleep, read results, make another change, sleep, read results. Wash. Rinse. Repeat. Ad nauseam.

It’s a longer process for some than others.

It’s your body, your choice. You can get good therapy from CPAP, but it takes effort. More for some than others. If you want help, the forums will be here. If you want to chuck it all in, the forums will still be here. You can always come back.
Sometimes it is the very people who no one imagines anything of who do the things that no one imagines

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jlsmithseven
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Re: Just about to quit cpap after a year , need advice

Post by jlsmithseven » Mon Dec 19, 2022 10:21 am

Yes I think the most frustrating thing is the inconsistency. And you have to use a nights sleep at your expense to figure it out. It’s like trying to guess the weather is my best reasoning for being on cpap. Some things are predictable and you can only do so much but the weather is weather. I just think since I had so much dental work done, it could be the very reason my airway is collapsing. It makes sense because of the timing of it all.

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Jlfinkels
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Re: Just about to quit cpap after a year , need advice

Post by Jlfinkels » Mon Dec 19, 2022 10:45 am

Sounds like you are trying to rationalise your decision to quit CPAP. You don’t need to do that as it’s your body, your choice. You owe no one here a bloody thing. Other than politeness and respect. We have enough long-term posters who seem to have lost the manners one was hopefully taught in childhood.

I have no medical training, so suggest talking to your ENT about your teeth theory. To my layman’s mind it sounds a bit wonky, but let the doctor ponder it.

Hang in there. Don’t throw in the towel just yet.
Sometimes it is the very people who no one imagines anything of who do the things that no one imagines

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robysue1
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Re: Just about to quit cpap after a year , need advice

Post by robysue1 » Mon Dec 19, 2022 10:49 am

jlsmithseven wrote:
Mon Dec 19, 2022 9:22 am
Recently I’ve posted on here asking for settings help etc. it seems like when I try to use them it works for a day, maybe two, then it just won’t work anymore and I have to try something different. I’m just about done with cpap therapy I think.
But that's part of your problem: You are changing settings every few days, and this never gives your body a chance to acclimate to the settings. In other words, just as soon as you have a less-than-good night, you're right back to the dial-wingin' and your body has to start all over again. In my opinion, you need to just leave the settings alone even after a bad night (or two) to give the body a chance to really adjust. (The exception to this is waking up in terrible pain from aerophagia, and then you go back to the previous setting rather than starting with more dial-wingin'.)

It takes time for the body to acclimate to a particular set of settings. And while some people can sleep blissfully while changing the settings every few days, most of us can't. And I suspect that your particular body may be more sensitive to changes than you want to believe.

And here's the thing: We don't always sleep the same every night. And hence even when we've got the settings totally optimized for us, there are still going to be nights where we feel lousy the next day. Sometimes it's that we have a really lousy night for the apnea, but just as often, our lousy night's sleep has nothing directly to do with our treated apnea or our xPAP therapy. Rather our sleep is bad for non-apnea related reasons.

Lots of things can cause bad sleep. One of the most common is stress. And when we start stressing out about how bad our sleep seems to be and how bad we feel in the morning, we can inadvertently aggravate our sleep problems.

Any kind of pain can play havoc with our sleep. Being sick can play havoc with our sleep. Eating too much to close to bedtime can play havoc with our sleep. Not eating enough during the day can play havoc with our sleep. Both caffeine and alcohol consumption can play havoc with our sleep.
Joined as robysue on 9/18/10. Forgot my password & the email I used was on a machine that has long since died & gone to computer heaven.

Correct number of posts is 7250 as robysue + what I have as robysue1

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jlsmithseven
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Re: Just about to quit cpap after a year , need advice

Post by jlsmithseven » Mon Dec 19, 2022 11:09 am

Thank you for the responses, I guess I never thought about change taking time that does make sense. I think I will go back to those settings I feel we’re pretty optimized and ride them out a month. I wish there was a way I could lock the settings so when I have a bad night I’m not dial winging again. It’s just so tempting to think, oh EPR is too high that was the reason let me change it. The fact is those settings RobySue1 gave me were pretty darn good for 2-3 nights in a row so I’m just going back and not changing it for a month. I think my thought process for changing it one night was, that my min of 8 was a bit too high. It might only take 6cm for my airway to remain open, so I’d hate to have it on 8 all night …which in return causes more dry mouth.

I have actually begun to kick caffeine to the curb. I think I was drinking in excess of 150mg+ in the morning not fully realizing it was staying in my system until 9. I have always tried to stop drinking caffeine after 2pm but I’m halving my intake and I think it helps me.

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Jlfinkels
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Re: Just about to quit cpap after a year , need advice

Post by Jlfinkels » Mon Dec 19, 2022 11:16 am

Ah young Jedi, you are starting to learn…

Controlling the change variables is one the basic tenets of research. In this case you are the researcher and subject all in one. One mistake I continue to make is when things are going well, I slide back into my bad habits, which causes sleep issues as RobySue said. Rather than change those bad habits I glare at the CPAP and blame it. When it does not glare back, I go back to good habits and things get better.

Sometimes we are the solution, other times the problem, often both.
Sometimes it is the very people who no one imagines anything of who do the things that no one imagines

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Miss Emerita
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Re: Just about to quit cpap after a year , need advice

Post by Miss Emerita » Mon Dec 19, 2022 11:55 am

Glad to hear you'll be sticking with some settings that have been helpful to you. About coffee: I had to cut back (for a different health reason), and what worked for me was to start using mixtures of caf and decaf, each week shifting the balance toward more decaf. I was surprised by how well this worked; I didn't have the withdrawal symptoms I expected. And for what it's worth, I feel the difference if I have any caffeine after around noon.

Good luck with this.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

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jlsmithseven
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Re: Just about to quit cpap after a year , need advice

Post by jlsmithseven » Mon Dec 19, 2022 12:16 pm

Miss Emerita wrote:
Mon Dec 19, 2022 11:55 am
Glad to hear you'll be sticking with some settings that have been helpful to you. About coffee: I had to cut back (for a different health reason), and what worked for me was to start using mixtures of caf and decaf, each week shifting the balance toward more decaf. I was surprised by how well this worked; I didn't have the withdrawal symptoms I expected. And for what it's worth, I feel the difference if I have any caffeine after around noon.

Good luck with this.
I have heard that, I just don’t like decaf because of the formaldehyde content. At least that’s what I’ve heard. Im doing ok with less coffee and drink less every day.

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Dog Slobber
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Re: Just about to quit cpap after a year , need advice

Post by Dog Slobber » Mon Dec 19, 2022 12:22 pm

I am going to be critical of you and your attempts to manage your therapy. You can either get all pissed off, stomp your feet and foe me, or consider what I said.
  • You seem to have this belief that you can keep twisting dials and pushing buttons, until you find the perfect combination of min/max/epr/humidity/hose heat, and that will be your key to sleeping great every night.
  • You don't seem to get that there is a lot of variance nightly. Having a single great night does not mean we're on the perfect settings, and having a single bad night means we need to start all over again.
  • You keep changing settings:
  • Often multiple things at once
  • Never in a methodical way
  • Sometimes against the current person, you're working withs advice
  • Sometime without even mentioning it to the person you're currently working with
  • Some graphs demonstrate you wake up
  • You often create a topic, then pivot, changing your goal completely abandoning your original topic goal
  • You often try to fix everything at once
  • You set these obscure targets, not grounded in reality
  • Members are encouraged to create a single therapy topic and then stick with so people can easily reference past settings, and advice.
I'm going to point your aerophagia topic to illustrate a lot of the above points, and believe me they are re-enforced in other topics as well.
  • You created a topic to address your aerophagia
  • A strategy to address it was presented by me
  • After some feedback we bade some adjustments because of comfort
  • You then wanted to address events
  • You then had a bad night and wanted to make changes to address that
  • You then mentioned that you had made a change to soft response, that you hadn't shared ealier
  • You were then advised to decide what the goal of the topic was.
  • You responded to optimize your therapy and address aerophagia and listed a buch of changes wondering if you should make them
  • You then ended the topic with: "Why bother changing anything really since this seems to be doing very well."
Bet result, the original goal was never addressed, and your secondary goals not addressed either

Here's a challenge for you.

Go to OSCAR -> Statistics -> Changes to Device Settings
and post a screen shot.

I'm going to hazard a guess that there are going to be dozens and dozens of changes, rarely more than a few days without changes, all hap-hazard and nothing can be learned from the changes.

I'll post mine:
Image

Anybody, can look at my history, see what I changed, saw the impact, see that I gave it time for it to be statistically significant. A lot can be learned.

I guarantee looking at your history, there is nothing that can be learned.

As much as you and others, will interpret this post as just another CPAPTalk bully being mean, it is to illustrate, document and show examples of what you've been doing wrong and a preferred approach.

My suggestions are:
  • Rename this topic, indicating it's your therapy thread
  • Don't create another
  • Pick a single goal, tolerance, aerophagia, dryness
  • Post graphs
  • Do not make any changes (mask, humidity, response) other than advised
  • Don't start making other suggestions or swing the topic into a different direction
  • Do not be concerned with optimization yet, you're still working on tolerance
  • Practice good sleep hygiene
  • Give each change time to be meaningful

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Miss Emerita
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Re: Just about to quit cpap after a year , need advice

Post by Miss Emerita » Mon Dec 19, 2022 12:26 pm

Oh, interesting! I just checked and learned to my relief that the decaf I use at home is water-processed. I found more information here:

https://www.consumerreports.org/coffee/ ... d-for-you/

Like you, despite reassurances, I wouldn't really want the chemically processed coffee in my brew!
Oscar software is available at https://www.sleepfiles.com/OSCAR/

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LSAT
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Re: Just about to quit cpap after a year , need advice

Post by LSAT » Mon Dec 19, 2022 1:10 pm

jlsmithseven wrote:
Mon Dec 19, 2022 11:09 am
Thank you for the responses, I guess I never thought about change taking time that does make sense. I think I will go back to those settings I feel we’re pretty optimized and ride them out a month. I wish there was a way I could lock the settings so when I have a bad night I’m not dial winging again. It’s just so tempting to think, oh EPR is too high that was the reason let me change it. The fact is those settings RobySue1 gave me were pretty darn good for 2-3 nights in a row so I’m just going back and not changing it for a month. I think my thought process for changing it one night was, that my min of 8 was a bit too high. It might only take 6cm for my airway to remain open, so I’d hate to have it on 8 all night …which in return causes more dry mouth.

I have actually begun to kick caffeine to the curb. I think I was drinking in excess of 150mg+ in the morning not fully realizing it was staying in my system until 9. I have always tried to stop drinking caffeine after 2pm but I’m halving my intake and I think it helps me.
To lock the setting you would need to change to Fixed Pressure

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jlsmithseven
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Re: Just about to quit cpap after a year , need advice

Post by jlsmithseven » Mon Dec 19, 2022 2:14 pm

Dog Slobber has some very good points and I apologize. I will not Foe you, I only did that to one person who didn’t start their post saying I will be critical of you.

I will do all those things you pointed out and give it time. The only thing that is consistent with my numbers is that for the past year my pressure never went above 9.8 in the 95% rate. That’s good information to know I think but as for everything else, yes I have been haphazardly doing everything. I really think Robysues advice on the other thread worked really well for me so sometime soon I will quote that post plus do all of dogs request and name my goal. I think the aerophagia thjng has gone away for the most part, after I stopped taping my mouth. My leak charts are not bad at all and even if it does leak it stays below 24. Thank you .

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jlsmithseven
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Re: jlsmithseven Therapy Thread

Post by jlsmithseven » Mon Dec 19, 2022 6:25 pm

So I've just renamed the thread, and explained a little bit of it in detail in the first post, I wanted to post something here to show the first night I used these settings. I've reverted back to them. The only thing that changed from this night until now is the temp/humidity settings, which I figured out in a different thread. My tube temp is at 84 and my humidity level is 6. It's been helping a lot with my dry mouth so I'm keeping it here.

Does this sound good Dog Slobber? Since everything seems to be pretty good just run these settings for a month or so, so we can collect some data?
Here are my setting changes and some stats as well..

Image
Image
Image
Image

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LSAT
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Re: jlsmithseven Therapy Thread

Post by LSAT » Mon Dec 19, 2022 6:57 pm

Waste of computer space!

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Additional Comments: Back up is S9 Autoset...... Buckwheat hull pillow