Starting soon

[Bubbles2024]

I have been reading through posts here and feel overwhelmed. Anyways I am wondering how accurate the Oscar or any data collection programs are. Would it be adventurous or a waist of time to journal throughout the night? It is my experience through the horrible at home sleep study that data is king and personal experience was not accounted for or even addressed in the report. However, I read in a post here that sometimes awake events are miss read in the data. It seems like doctors and insurance only care about data. I am hoping this is not so. I work with data all the time at work and it doesn't always show the truth or the individual as a whole person. I guess I'm asking should I be okay being a number or is it to much to advocate for being treated as a whole human being? What are your experiences with how truthful data is? Just curious.

[robysue1]

I have been reading through posts here and feel overwhelmed. Anyways I am wondering how accurate the Oscar or any data collection programs are.

There are two main pieces of data that are worth analyzing in the Oscar reports: (1) Efficacy data (i.e. recorded apneas and hypopneas, along with the calculated AHI) and (2) leak data. Almost everything else can be ignored by most people with simple OSA if they don't want to micro-analyze everything, particularly once things are working well in the sense that you think you're sleeping well with the machine, you're feeling rested when you get up in the morning, and you don't have excessive daytime sleepiness.


Efficacy data
In terms of tracking your breathing while the machine is on and you are using it, the machines are accurate in recording the data about your breathing and OSCAR does an excellent job of displaying that data accurately.

But the machines can't tell when you're awake and when you are asleep. And normal wake breathing is far, far different from normal sleep breathing because wake breathing is controlled by a different part of the nervous system. Normal wake breathing is far less regular than normal sleep breathing and perfectly normal wake breathing patterns can be mistaken as sleep disordered breathing since the machine (and hence OSCAR) assume that if you are using the machine, then you are probably asleep. So data from nights where you remember few or no wakes is actually quite good. Data from nights where you know you were tossing and turning and waking up a lot and having trouble getting back to sleep are likely filled with "sleep-wake-junk" breathing that may be filled with "false positive" events---things that are scored as apneas or hypopneas that are not actually apneas or hypopneas because you were awake (even briefly) when they happened. So expect some variation from night to night on your machine-reported AHI, but don't get alarmed by the occasional outlier with an AHI that is larger than normal and larger than what you'd like. We all have occasional visits from "Pugsy's aliens" every now and then. Things like being sick with a bad head cold, seasonal allergies, a new pain, an old pain that's acting up, too much coffee or alcohol, being overly worried/tense about something in your life, etc. can all have a negative affect on the nightly AHI.

When the apneas and hypopneas were scored each night is shown in the flow rate data, which is literally a visualization of every breath you took while the machine was running. If you are a data geek, looking at that flow rate stuff can be both fun (in a perverse way) and illuminating, particularly if something appears to be wrong with the efficacy of the PAP therapy.

Trending data (looking at the AHI over a week, a month, or multiple months) is accurate enough to know whether your therapy is doing a good-to-excellent job of prevent the vast majority of your apneas and hypopneas from happening: If you have a monthly AHI in the 0.0 to 2.0 or 2.5 range, your machine is doing an excellent job of treating your average. And most of the cpaptalk.com regulars do have AHIs that low on almost all nights. On the other hand, if your monthly AHI is up around 10, the machine's current settings are clearly not optimized no matter how well you might feel.

Leak data
Leak data is accurate and useful: All masks have a built-in leak rate to prevent us from rebreathing too much of our own CO2. But excess leaks can be a serious problem for some people, particularly those who do a lot of mouth breathing. Excess leaks cause problems in two circumstances:

1) They are large enough and last long enough to affect the efficacy of the therapy. In other words, when a very large leak lasts long enough, the machine might not do a good job of preventing apneas from occurring. The machine will also have trouble accurately tracking your breathing in the presence of a large, long leak. Hence the AHI data itself might become suspect. Each manufacturer has their own definition of when to flag a large leak; Oscar's programming can read the large leak flags and display them. Resmed (the most commonly used brand on cpaptalk.com) defines any excess leak over 24 L/min to be a "large" leak. But they also think that if large leaks are kept to less than 30% of the night, the efficacy of the data is not severely affected. Hence, Resmed's MyAir leak score is not severely impacted until the large leaks last that long. (And in the Sleep Report on the machine itself, Mr. Red Frowney Face doesn't show up unless the excess leaks are at least 24 L/min for at least 30% of the night.

2) Pesky leaks that wake you up or keep you from getting (back) to sleep. Any leak that wakes you up or keeps you from getting to sleep is a problem because it's interfering with your sleep. Pesky leaks may or may not be large enough to be flagged as official "large leaks", but that's irrelevant---particularly in the middle of the night when all you want to do is close your eyes and get to sleep. Pesky leaks can be caused by lots of things: Over tightening the mask is a big culprit for lots of new PAPers. Under tightening can be a problem (but it's much less common). Other pesky leak causes include moving around in bed and bumping the mask on a bed pillow; aging mask cushions or nasal pillows; mouth puffing when your lips slightly open on exhales; an actual hole in the hose or mask cushion that you didn't notice when you put the equipment together, and many more things.

But in general? If your leaks are not being flagged as "Large Leaks" and they're not waking you up or keeping you from getting to sleep, then you may be better off ignoring them unless you're also dealing with the problem of waking up with a dry mouth in the presence of leaks.

Would it be adventurous or a waist of time to journal throughout the night? It is my experience through the horrible at home sleep study that data is king and personal experience was not accounted for or even addressed in the report.

Keeping a journal throughout the night---as in trying to write things down in the nighttime is counter-effective: Doing so will just make you wake up and keep you from getting back to sleep in a timely fashion.

However, writing a "sleep log" in the morning with notes about what you remember after you wake up can be productive for certain people. Sleep logs are a tool that is often used by sleep docs and CBT psychologists who are treating a patient with garden variety insomnia because most insomniacs vastly underestimate the amount of sleep they actually get and over estimate the amount of WASO---wake after sleep onset----that they experience on a nightly basis. Sometimes the log helps an insomniac better understand what's going on with their sleep. When I started out on PAP, I was dealing with both some really severe insomnia as well as getting used to PAP, and the sleep log proved to be a power CBT tool for me in reining in the insomnia monster. I'll be camping this week (we're leaving this afternoon), but if you're interested in what my sleep log involved, PM me or post here and I'll be happy to give you the details after I get back.

However, I read in a post here that sometimes awake events are miss read in the data.

As I said before: Normal wake breathing looks nothing like normal sleep breathing. And normal wake breathing can sometimes be flagged as an apnea or hypopnea because the machine does not know when you are awake. It's that simple: "events" when you are awake are not sleep disordered breathing because they occur when you are awake.

It seems like doctors and insurance only care about data.

Insurance companies use a "rent-to-own" scheme to pay for the machine---they and you make monthly payments to the DME for typically about 9-12 months, and at the end of that period, you own the machine outright. Obviously insurance companies don't want to pay for machines that are not being used. Hence they demand usage data before they keep paying for the machine. Typically an insurance company will require a patient to return the machine to the DME if the patient will not use the machine for at least 4 hours in each 24-hour period for (roughly) at least 20 days a month in the first 2 or 3 months of CPAP therapy.

Doctors may or may not care about the efficacy data. I've had a total of 5 sleep docs in the last 14 years. The worst ones I fired because they were not interested in the data. The best one (now retired) not only was interested in the data, but also understood that I (as a well-informed patient and a math professor) understood my own data well enough where he gave me his blessing for changing therapeutic settings on my own. (I don't do it often, and when I do, I have a specific reason in mind.) My current sleep doc inherited me after the previous one retired and seems to care enough about the data that I'll continue seeing him and his PAs

My advice? If the doc isn't interested at all in the efficacy data or acts like you have no need of knowing what that data is or what it means, think about firing the doctor. You don't need a doctor who wants to treat you like a mushroom by keeping you in the dark about your own data.

I work with data all the time at work and it doesn't always show the truth or the individual as a whole person. I guess I'm asking should I be okay being a number or is it to much to advocate for being treated as a whole human being?

Advocate for being treated like a whole human being. Be aware that you should do this with any doctor you see for any medical condition. But also be aware that many doctors treat most patients as a "body" where they are responsible for treating the one part of that body where their expertise lies. And all too often doctors (and not just sleep docs) ignore how their prescribed treatment affects other things the patient is dealing with.

In my own case, I have chronic migraines, chronic tension headaches, TMJ problems, a tendency towards insomnia, and sleep apnea. These problems are intertwined together and an uptick in problems in any one of these areas can grow into increasing problems with the others. Until I was able to find doctors/PAs who understood that, I felt trapped in a never ending cycle of whomping gophers---do this to fix A, but gopher B pops up.

Since you work with data, I strongly suspect that you will find using Oscar worthwhile. But a tip: Rather than talk to your doc about "Oscar", take the time to see if you can find the clinical software for your machine over at apneaboard and run off reports using that software rather than Oscar. Oscar is easier to use, but doctors haven't heard of it and because Oscar has not been programmed by "industry programmers", they're not going to trust it. (Fun fact: The initial version of SleepyHead, the precursor to Oscar, was written by a sleep apnea patient who used to post here under the name JediMark.)

What are your experiences with how truthful data is? Just curious.

As I've stated above, I find the data is reasonably accurate, but I also know enough about my breathing patterns (from looking at the data over the course of several months and then years) to have a pretty good idea of when an apnea is most likely a post-arousal wake breathing event and when it is most likely a real event. When the insomnia has been a significant problem, I found the ability to turn the machine off and then back on a useful way of tracking the wakes that were long enough for me to become fully conscious in the middle of the night, but that may not have lasted long enough for me to remember them.

My husband is now also a PAPer having been diagnosed with mild OSA several years after I was. Hubby was dealing wit a lot of daytime and early evening sleepiness before PAP. In his case, the leak data has been useful in helping us figure out when his leaks have been a big enough issue for us to troubleshoot and when our troubleshooting has fixed the problem.

But mostly, in the early days, looking at the data reassured me that the machine was doing its job. And looking at the data gave me a sense that I was actively involved in my own treatment rather than being a mushroom having all this stuff (i.e. CPAP + mask) just thrown at me with orders of "Make this work or you will die sometime in the future of something that can be prevented by using CPAP."

[Bubbles2024]

Thanks for the information. I would love to hear what you used for a morning journal. I believe I will definitely need some CBT and if normally will help with that process I'm good. I don't want to be a mega data person so just want to know the most important numbers to watch. I freak Everytime I gain a pound and I way daily. When I'm down my stress goes away. I just need to know the basics and when to freak and when not to freak. I want to track the awake times so they aren't mistaken or false positives that count against me. I need proof. Also, one more question for you as you seem as if you struggled initially too maybe not as much as I but I do feel a connection. How open do you feel you can be with your doctors and how much do you trust them? I'm afraid to tell them things like I feel depressed etc because I don't want meds and other stuff. I don't want to tell them stuff cause than it's like a bad mark . Watch out for her she's trouble. I do a very good job of hiding from others because I've never been allowed to be weak and all this makes me weak. I am not weak I am a fighter, I am in a cacoon waiting to emerge as a butterfly. I'm a bad ass bitch that can control 1770 ccs of power between her legs and yet I feel so upset about a stupid CPAP machine and doctors not leaving me alone. I wanna tell them let me figure out how this sleep apnea thing first, while also navigating weightlose. Than I will do other screenings and what not when I am ready not on their time. Is it okay to just say that? I don't want to seem difficult or non compliant but it is my life and they need to understand that. When I look back maybe the difference between me being able to ride a motorcycle and assume that risk is because I control the machine and the environment I am
constantly scanning and correcting, protect myself and others I might be riding with. With a CPAP I have no control and that is frightening. It just clicked as I read my post. I need to feel some control here in the process whether that's putting up clear boundaries with med staff or whatever I need to find something to control. Seriously posting here is helping me work out some issues. Thank you!

[robysue1]

I'm on a camping vacation right now. But my husband and I are sitting in a coffee shop this morning and I thought I'd check cpaptalk.com to "catch up"

You write:

Thanks for the information. I would love to hear what you used for a morning journal.

The goal is to keep it simple. Use a spreadsheet or a paper table with columns to fill in for each night

Basic information to record before you go to bed each night:

• Short evaluation of how you felt during the day---use a simple scale where 0 = awful and 5 = great for example
• Note any daytime naps, both when they were and how long they lasted
• Note any use of medication, caffeine, and alcohol, particularly late in the day
• Bedtime

Basic information to record after you get up each morning:

• Wake up time---the time you actually get out of bed.
• Short evaluation of how you feel immediately on waking---use a simple scale where 0 = awful and 5 = great, as in rested and ready to start the day
• Guesstimate on how long it took you to get to sleep. A range is fine, and it's important to not look at the clock during the night to get a better, more accurate idea. Your intuitive estimate of how long it takes you to get to sleep is more important than establishing how long it actually took.
• Guesstimate on how many times you think you woke up. Again, you're looking at an impression rather than accurate data. Keep in mind that a few short wakes during the night are actually both common and part of a normal sleep pattern. But the trick is to get back to sleep quickly enough where you don't remember the wake.

Basic CPAP data to record after waking up each morning, all of which can be obtained from a Resmed's screen:

• Run time: How long was the machine on
• AHI, AI, and CAI. The HI can be computed by the simple formula HI = AHI - AI. The obstructive apnea index (OAI) can be found by the simple formula OAI = AI - CAI.
• Leak Rate (This is the 95% leak rate; more on that in a minute.)
• Does Mr. Green Smiley Face or Mr. Red Frowny Face show up in the "mask fit" part of the report?

If you wind up with a PR DreamStation, the available data is a bit different.

I believe I will definitely need some CBT and if normally will help with that process I'm good.

I think most people are able to adapt to CPAP without any serious problems---if they don't give up right away. But for people who do have serious problems (and I'm one of them), some CBT can help.

I don't want to be a mega data person so just want to know the most important numbers to watch.

The numbers to watch, and why they're important, are listed below:

The AHI.
In general the AHI is the average number of apneas and hypopneas that occur each hour the machine is run. A diagnosis of mild obstructive sleep apnea occurs when the untreated AHI > 5.0. Moderate OSA is diagnosed when the untreated AHI > 15. And sever OSA is diagnosed when the untreated AHI > 30. The goal of CPAP is to get the AHI to consistently stay below 5.0, and ideally well below 5.0 each night. It is not reasonable to expect a treated AHI to be 0 every single night. But most people around here will typically say that they need their AHI < 2.5 or 2.0 to feel at the their best.

It's also important to not freak out if you occasionally see an AHI that is higher than 5.0. In my case a sudden increase from my usual AHI numbers to ones that are above 4.0 or 5.0 can indicate I'm getting a head cold. Soon as I am over the cold, the AHI goes right back to it's usual range between 0.0 and 2.0. Also if you have a really bad night in terms of tossing and turning, the AHI can be higher than normal simply because of "false positives"--i.e. wake breathing misscored as bad sleep breathing because the machine doesn't know you are awake and tossing and turning.


The leak numbers
If your 95% unintentional leak rate is always below about 24 L/min, then your leaks are not large enough to affect your therapy and can be ignored as long as they're not waking you up or keeping you from getting to sleep.

If you are using a Resmed machine and your 95% leak rate is over 24 L/min, it's worth investigating how long your leaks are in Large Leak territory. The mask fit icons (Mr. Green Smiley Face and Mr. Red Frowny Face) give you a short answer: Mr. Red Frowny Face shows up on the machine's screen when your unintentional leak rate is > 24 L/min for at least 30% of the night. That's the (somewhat artificial) line the Resmed engineers have drawn for when Large Leaks are lasting long enough to have an adverse affect on the efficacy of therapy. In other words, when Large Leaks occur at least 30% of the night, there are likely some obstructive events that are happening because the machine can no longer effectively prop your airway open. The AHI data itself also becomes less accurate because the machine just can't track your breathing that well in the presence of a large leak.

Most folks around here would argue that Resmed's idea that Large Leaks are "ok" unless they are present for at least 30% of the night is being too generous. I've never had a problem with Large Leaks. My husband has, and we get concerned enough to do troubleshooting if he's in Large Leak territory for 15% or 20% of the night. OR if it wakes him up.

To be continued in the next post.

[robysue1]

I freak Everytime I gain a pound and I way daily. When I'm down my stress goes away. I just need to know the basics and when to freak and when not to freak.

That's something that I think you should work with a CBT therapist on: Stressing out over small details whether it be your weight or (once you start PAP) your AHI or leak numbers. Learning behavioral strategies to help prevent the freaking out and the stressing out about (minor) details is a useful thing for anybody to work on.

I want to track the awake times so they aren't mistaken or false positives that count against me. I need proof.

First, the false positives don't "count against you" like there is some kind of competition for getting the best, lowest AHI.

Your body doesn't breathe well at night because your airway collapses for some reason. That's what OSA is. And CPAP fixes that problem by making it far harder for your airway to collapse.

And if your treated (i.e. machine scored) AHI is less than 5.0, then even with false positives, your body is experiencing few enough genuine events for therapy to be considered effective.

Next, the problem with "tracking the awake times" is that it leads to clock watching, which in turn leads to your brain deciding that tracking the data about wakes and false positives is more important than getting some sleep. And then you get to add freaking out about how little sleep you're getting to all the rest of it.

Here's my recommendation as someone who had to fight insomnia and a bad CPAP adjustment at the same time: If you absolutely have to track wakes, let the machine do it buy simply turning the machine OFF and then back ON each time you wake up. You'll need to look at the data in OSCAR to see both how many times you turned the machine off and back on, but OSCAR will then tell you exactly when each wake occurred. You'll also be able to zoom in on the breathing pattern just before and just after the wake to learn what your particular sleep transitional breathing typically looks like.

As for worrying about false positives versus real events in an effort to determine whether the CPAP machine is actually doing what is supposed to do: You can always look at the data in OSCAR. And here's the thing: If you look at the data in OSCAR, the breathing pattern itself may be enough to tell you when an event is likely a false positive.. Here's a recent "bad night" for me---my AHI is almost always below 2.0 these days, and so the AHI = 3.75 on this night might initially look alarming:


But even without zooming in, I can tell that first cluster of three events is not real---I obviously was having trouble getting to sleep that night, and these events happened as I was trying to get to sleep. The second cluster of events? At this level of zooming I'm still pretty sure those are false because it's still not clear whether I've really gotten so sleep.

Zooming in just a bit I can tell that second cluster of events is also false: I'm awake here and dealing with a pesky leak that is keeping me from getting to sleep:


Whether the rest of the events on this night are (or are not) real is clearly immaterial: Even with all the false positives at the beginning of the night, my treated AHI is well into the normal range. But if I really want to ease any stress, I can simply zoom in on each of the events. For example, look at this pair of OAs:

The first one is most likely real. The second? I think it's a sleep transitional central (i.e. "non-event") that occurs after the arousal triggered by the real OA, and that sleep transitional central is just misclassified as an OA.

But when I look at this:

It's most likely a sleep transitional central (i.e. a "non-event") that occurred as I was getting back to sleep after some kind of mini-wake/arousal that I didn't remember in the morning.

Now I would not advise you to analyze your data with a fine tooth comb each and every morning. But if you see stuff that you're wondering about, that's what OSCAR is for. And if you're worried that the PAP machine is not doing its job of preventing the vast majority of your obstructive events, you can look first at the AHI data on the machine's LCD; and if it's well below 5.0, you can assume the machine is doing its job. If the AHI data is higher than you want to see (or if you're just curious), load the data into OSCAR and take a look.

More in the next post

[robysue1]

Also, one more question for you as you seem as if you struggled initially too maybe not as much as I but I do feel a connection. How open do you feel you can be with your doctors and how much do you trust them?

With the help of a very good psychiatrist, I've learned to be willing to fire doctors whom I dislike because I do not feel respect my intelligence and my knowledge about my own body.

At this point, I am more willing to fire a doctor who I cannot develop a rapport that includes trusting them.

But finding docs you can trust can be hard. You just have to keep persevering. And you have to also be aware that a great doc for Person A may be a very bad doc for Person B.

I'm afraid to tell them things like I feel depressed etc because I don't want meds and other stuff.

Three things:

1) You have the right to refuse treatment if a doctor says that you should take an anti-depressant. And the worst the doctor can do is fire you as a patient. (Been there and done that a couple of times in the search for a good sleep doc.)

2) If a doctor continues to press you to take a drug that you've made it clear you are uncomfortable taking, you have the right to fire the doctor. (Did that to my old PCP when he insisted that I take Fosamax for osteoporosis when I had good reason to doubt the diagnosis.)

3) If you have given talk therapy and CBT for depression an honest shot and it's not working, you may want to consider whether medication might be worth a trial. Not everyone experiences side effects and anti-depressants and anti-anxiety medication do help a lot of people feel better.

I don't want to tell them stuff cause than it's like a bad mark. Watch out for her she's trouble.

Decent health care providers don't keep score on their patients. Yes, occasionally a doctor and his staff will conclude that a patient is too much "trouble" to continue to treat and they may "fire" you as a patient. In that case, you still have the right to get copies of all your medical records and see what they've actually written about you. You can hand-deliver the relevant stuff to a new doctor and not request that your files be forwarded to the new doc. (The old doc can't just forward those files without your permission because of HIPAA laws in the US.)

I do a very good job of hiding from others because I've never been allowed to be weak and all this makes me weak.

Having OSA doesn't make one "weak". Needing a CPAP does not make one "weak". Having depression does not make one "weak". Having any medical condition does not make one "weak."

The reason you feel weak is that you are allowing your own negative ideas about OSA and CPAP (and possibly depression) to inflict your own prejudices against yourself. You've convinced yourself that people with OSA are not "strong" and are somehow "weak" for inflicting this condition on themselves (possibly because they're fat?) and that you, yourself can't possibly be like all those other folks with OSA who you think aren't as strong and as "bad ass" as you are.

I am not weak I am a fighter, I am in a cacoon waiting to emerge as a butterfly.

Almost all the old hands on this board has OSA and we all use a cpap. And none of us are "weak". Many of us have had to fight to get a proper diagnosis because we didn't fit the stereotype of an OSA sufferer. Many of us had to fight to get a machine that recorded full data. Many of us had to fight to make this crazy therapy work for us. But we are strong because we did not give up in the face of adversity.

I'm a bad ass bitch that can control 1770 ccs of power between her legs and yet I feel so upset about a stupid CPAP machine and doctors not leaving me alone. I wanna tell them let me figure out how this sleep apnea thing first, while also navigating weightlose.

The problem is you can't "figure out" this sleep apnea thing while navigating weight loss.

Your body needs help now in getting the kind of sleep it needs to be healthy (at any weight). And CPAP can provide that help---if you are willing to fight to make CPAP therapy work for you. But instead of fighting to make CPAP work, you want to fight against CPAP---your attitude towards the machine is something that many of us have gone through. But the difference is we decided to fight for our health instead of against it by doing all we can to make CPAP work for us.

And some unsolicited advice: What you've written about your weight and your attitude towards your weight and your attitude towards food indicates that you've got some significant issues to deal with when it comes to losing weight in a healthy way and then keeping that weight off. Trying to lose weight while not treating the OSA because you think the CPAP machine is "stupid" is likely going to not lead to either your goal of losing the weight and keeping it off as well as getting the OSA under control.

Than I will do other screenings and what not when I am ready not on their time. Is it okay to just say that?

It really depends on what those screenings are and why they're being suggested.

Screenings like a colonoscopy? No, I wouldn't put that off. But then I had a SIL die of Stage 4 colon cancer at the age of 58 who ignored getting screened in spite of a family history of colon cancer. Ysabel became the biggest advocate of colonoscopies and she talked everyone she could into getting them (including me way back when) because she didn't want others to suffer unnecessarily.

Screening for diabetes? Screening for thyroid problems? Screening for breast cancer? Screening for heart disease? It all depends on your family history and your own medical history. But in general screenings are good if they can catch things early enough to treat.

I don't want to seem difficult or non compliant but it is my life and they need to understand that.

Their job is to recommend treatment to keep you healthy for as long as possible. Non-compliance is a huge issue for all doctors treating all kinds of chronic conditions. A good doctor will listen to why you are having problems being compliant and will (when possible) try to find other possible treatments. But even a good doctor will become exasperated if all you can say is "I don't wanna" when he/she proposes a particular treatment for a particular heath problem that you do indeed have and that can be properly managed by the treatment they are recommending/prescribing.

When I look back maybe the difference between me being able to ride a motorcycle and assume that risk is because I control the machine and the environment I am
constantly scanning and correcting, protect myself and others I might be riding with.

All humans have a badly distorted sense of risk when it comes to things we think we can control and things we can't.

But for things we enjoy? We evaluate the balance of the positives (i.e. the way the activity makes us feel) versus the very real risk of injuring ourselves, possibly severely. It's part of living. (You really can't control the environment when you're on that motorcycle, anymore than I can control the environment when I'm skiing down a black-diamond hill. But I'm no more likely to give up skiing than you are to quit riding your motorcycle.)

With a CPAP I have no control and that is frightening.

You don't have control over the fact that your body decided to develop OSA and that can indeed be frightening because it forces us to accept our own mortality

But once you have your machine, you will have a great deal of control over the CPAP machine: Every single night you have the choice of whether to put the mask on or not. Every single night you have the choice of whether to keep the mask on if you wake up in the middle of the night or to take the mask off.

And CPAP is what allows you to take control of the the OSA: If you choose to use the CPAP and if you choose to do the things that may be necessary to optimize your own therapy in your own bedroom, then your OSA will no longer be a factor in how your body functions. And you will be actively taking control of minimizing the very real risks of untreated OSA on your long-term health.

Now I'll be honest: The DME and the doc may patronize you and will tell you not to worry your pretty little head about the data your CPAP machine records. And they may tell you that you don't need to know what your treated AHI is. And they may tell you that you don't have leaks because you're not complaining of a dry mouth when, in reality you do have leaks. Or they may tell you that you must have leaks since you're saying your mouth is dry even though the leak data clearly indicates you don't have leaks. The DME or doc may tell you that you absolutely must use a full face mask because a dry mouth indicates you're mouth breathing. Or they may tell you that nobody needs a full face mask even when you yourself know that you breathe through your mouth.

There are all kinds of ways that DMES and sleep docs patronize and infantilize OSA patients. And it requires real strength and real courage to tell a DME or a sleep doc: I want to be involved in my own therapy and I want to know XYZ. And to fight back against suggestions that you know are just plain wrong for you individually no matter how right they might be for someone else. (That's critical when it comes to choosing a mask.) And finally, it takes real strength and real courage to take the advice of folks here to get the clinical manual for your machine and to learn how the prescribed settings were chosen and when to override them regardless of what your DME or sleep doc says.

[chunkyfrog]

You have our collective permission to be the biggest badass you can be.
You have a RIGHT to your data, and people here will help you understand it.
We are not obliged to do anything that is not in our own best interest.
Certainly not to make any lazy provider's life easy!
Be polite, but FIRM. Your life may depend on it.

[Bubbles2024]

Thank you!