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I'm slipping away...........
#31
RE: I'm slipping away...........
I appreciate your response very much. I'm really not trying to blame anything on my CPAP therapy. What I am trying to do, is figure out what is getting older related, and what isn't. 

I'm okay with getting older. No one escapes it! Some can maybe put it off to some degree, but it will catch up to you sooner or later. Little aches & pains come and go. Not a big deal. I don't have the energy that I used to. I understand. 

A-Fib was a concern just a couple of years ago. Got that treated and dialed in. I take meds for high blood pressure. I take an OTC med for reflux issues, and I haven't had a single episode of my esophagus being blocked for almost a full year now. For me, that's frigging remarkable. I used to have to go to the ER to have it cleared. Going 2-3 times a year wasn't all that abnormal. 

Being on sleep apnea therapy is a big deal. If I have to be on it, so be it. But.....if for some reason, it's not necessary, I do want to know. If I slept terribly w/o the therapy, and slept well with it, it would be patently obvious. But, I don't! I sleep well one way or the other. That's what's bothering me. 

I laid down for a nap just a bit ago. I slept for give or take, an hour. No machine! It was great! No need what-so-ever to gear up. Got up and I feel great. A short nap, or lack of one, can make or break my day. My doc wanted to give me a script last time to perk me up during the day. I said, no thanks! He agreed to my nap taking. 

Sorry to all if this sounds like, or comes off, as whining. It's not meant to be. I just don't want to partake in the therapy if is really isn't necessary. And, if I don't question it, I'll never really know.
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#32
RE: I'm slipping away...........
The most interesting thing to see from your sleep studies is if you were having associated oxygen desaturations (which I would expect with AHI of 70).

If that is the case then an oximeter could be your best friend for seeing if PAP is helping your physical wellbeing even if you aren't noticing the results yourself (maybe you just keep thinking PAP is going to do something it won't, like Sleeprider says it won't make you younger or necessarily healthier). If your O2 levels are better with PAP then it is worth sticking with it even if your subjective opinion is that it isn't doing much. Untreated apnea can cause and worsen heart issues like atrial fibrillation which is why your doctor did the sleep study in the first place (to see if apnea was a potential cause). If PAP is doing nothing more than avoiding decline in heart function that seems like a win to me and it would mostly be doing so by maintaining SPO2 levels which is why an oximeter would be helpful to know if PAP is helping you.

If you aren't having any effects on SPO2 then that seems like another piece of evidence that PAP isn't really doing anything for you (and that something about study might not have been accurate).
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#33
RE: I'm slipping away...........
I did use an oximeter overnight several months ago. It was prescribed to me by my sleep doc. Someone delivered it to me, and then picked it up the next day. I was told that the result was normal, and there was no concerns.

I have since bought one myself. It's not the kind though, that you can wear overnight and download the results. It is the regular kind that gives you your pulse rate and blood / oxygen ratio result. The result is always in the 90's. 

Would checking my blood / oxy. ratio before and after waking be sufficient? As it is right now, I check it just to see how I'm doing. There is no scheduled routine involved.
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#34
RE: I'm slipping away...........
Many people, myself included, have 'successfully' treated apnea with PAP, with tremendous reduction in AHI. I went from 40ish down to consistent <5.

I am 100% compliant, pretty good at minimising leaks and my machine is optimised (thanks to the smart folks in here).

But I pretty much never wake up feeling refreshed. In fact, I have given up hope in that regard and accept that this is as good as it gets for me. I'm happy that my AHI is under control, given the health impacts that untreated apnea can bring, not least of which is heart problems (tick).

My theory is that, for a significant number at least, PAP works great for treating their apnea but doesn't support 'real' sleep. I suspect that something about being inflated all night messes with the sleep cycles and phases that are important to good sleep.

Science is slowly coming to understand that our brain and gut are linked in a quite unexpected and extraordinary way. What goes on in our gut has profound and measurable impacts on our brain function, mood, etc. There is even a growing suspicion that poor gut health can lead to generalised inflammation and depression. Could it be then, that blowing up out stomach and gut with pressurised air for eight hours screws with that system? I don't know.

All I do know is that your complaints are pretty common. One day we will know why, I hope, but of course it's not in the interests of the CPAP industry to even acknowledge this problem exists, and it's therefore unlikely that research into it will be openly funded.
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#35
RE: I'm slipping away...........
(05-16-2021, 05:16 PM)Big Guy Wrote: Being on sleep apnea therapy is a big deal. If I have to be on it, so be it. But.....if for some reason, it's not necessary, I do want to now. If I slept terribly w/o the therapy, and slept well with it, it would be patently obvious. But, I don't! I sleep well one way or the other. That's what's bothering me. 

I laid down for a nap just a bit ago. I slept for give or take, an hour. No machine! It was great! No need what-so-ever to gear up. Got up and I feel great. A short nap, or lack of one, can make or break my day. My doc wanted to give me a script last time to perk me up during the day. I said, no thanks! He agreed to my nap taking. 

Sorry to all if this sounds like, or comes off, as whining. It's not meant to be. I just don't want to partake in the therapy if is really isn't necessary. And, if I don't question it, I'll never really know.

I was told last fall that I didn't need CPAP therapy. Here's why:

Quote:4) Arousal and Awakening Data:
- A total of 13 awakenings and 51 arousals were seen across the night resulting in a mean of 8 arousals and 2.2 awakenings per hour of sleep. A mean of 1 arousals per hour of sleep were related to respiratory events, 0.0 arousals per hour of sleep were related to periodic limb movements, and the remainder without particular cause.
5) Sleep-related Respiratory Patterns:
- A total of 3 apneas (2 obstructive, 0 mixed, 1 central), 9 hypopneas (9 Obstructive and 0 Central), and 9 respiratory event related arousals (RERAs) were observed in 361 minutes of total sleep time.
- Apneas lasted a mean of 13 seconds (OA, MA, CA) and as long as 13 seconds. Hypopneas lasted a mean of 24 seconds and as long as 48 seconds.
- The mean number of apneas and hypopneas per hour of sleep was 2 per hour of sleep- If respiratory event related arousals (RERAs) were also scored, the respiratory disturbance index (RDI), the mean number of apneas, hypopneas and RERAs per hour of sleep was 3 per hour of sleep.
- The lowest oxyhemoglobin desaturation (SpO2) related to a respiratory event was 92% associated with a 19 seconds obstructiveHypopnea.
- RDI supine was 26 per hour, RDI prone 0 per hour, and lateral RDI 2 per hour of sleep. During REM sleep: REM RDI was 3 per hour, NREM RDI 2 per hour, REM supine RDI 0 per hour, and NREM supine RDI was 4 per hour of sleep.

The bean-counting version says "don't worry be happy..."

BUT the 13 awakenings and 51 arousals? not good...

Calling 7/8 of of arousals as having nothing to do with respiratory events? not really plausible...

24-second to 48-second hypopneas? not good...

RDI supine of 26? not good...


So my reaction was to collect my own data. I set the pressures to min of 7 max of 8 -- in other words, not enough pressure to have therapeutic effect, but enough so that the machine can measure and record my breathing.

Look at the flow limits:
[attachment=32275]

I'm rumbling along the whole night, first big flow limits, followed by arousals  -- lather, rinse, repeat... Now in MY sleep lab, they don't care about flow limitations. They apparently only score it as a RERA if it's an apnea or hypopnea followed by an arousal, but what I see in my data is those hour-long slams of big flow limits where every couple of minutes the FLs cause an arousal as I gulp for air. The reason that I was not having apneas and hypopneas during the study was that I couldn't stay asleep long enough to get that far into an event.

While the sleep lab is oblivious to flow limits, the machine is driven by them. And since I have the pressure cranked way down, it can't raise the pressure like it wants to as a reaction to the flow limits.

Shorter version: the machine pegs the pressure to the max because the machine thinks that I need CPAP therapy!

Numbers are this -- look at the flow limit statistics:
[attachment=32274]

If you like, you could try the same experiment on yourself. This is why I keep asking what your machine thinks is going on while you are asleep...
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#36
RE: I'm slipping away...........
Heh Big Guy,,

I *think* that the emphasis is in the wrong place with all this 'pap stuff.

Cuz if we're not getting a good night's sleep what's the point? If I gotta wear all this **** it had better work.

So why aren't you getting the results you want? Look at simple things first. If you want.

My thoughts in case they help....
* masks don't last
* they go bad slowly...they get worse and worse.
* machines have a lot of good qualities...if they're set up right.

What I think I know...
* if I stop breathing my blood oxygen levels go down. Or I just stop breathing. Game over.
* a good DME solves mask problems.
* a sleep doc does squat for me.
* EXCEPT my new sleep doc said he would increase my setting from 11 to 13 so I would have better sleep. (Darned if bells didn't ring in my head!)
* whole bunch of people told me I needed an apap. Things didn't get better for me until I listened and got one! And then followed instructions here and set it up right.

* if I needed an apap that doesn't mean you need one too....but smarter people than me will help you.

Finally YOU helped me a lot by suggesting I get a hose hanger. Darned if I didn't have one. I just wasn't using it. I've used it every night since I read your message and it's made a great difference. YOU made a great difference for me. Thanks!

When I get really PO'd I think different. I think "My father had sleep apnea. I remember how he sounded. He lived to 76 without a da** cpap machine." And then I think. I'm 74 now. I'll wear the darn mask and turn the machine on.

so my quest is for sleep quality. And feeling better.
DaveL
Compliant for over 30 years


I'm just a cpap user like you. I don't give medical advice. I hope to learn everyone, and that's why I share here. 
Seek the advice of a physician before seeking treatment for medical conditions including sleep apnea. Sleep-well

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#37
RE: I'm slipping away...........
(05-16-2021, 05:27 PM)Big Guy Wrote: Would checking my blood / oxy. ratio before and after waking be sufficient? As it is right now, I check it just to see how I'm doing. There is no scheduled routine involved.

It has to be a recording type. Your oxygen levels change in a matter of seconds/minutes, checking it in the morning after waking tells you nothing about how your oxygen levels were affected by your breathing through the night. 

The key would be to see how O2 levels fluctuate if wearing PAP vs not wearing it. Is your average SPO2 the same or higher with PAP? How does your time spent below 90% compare? What is your oxygen desaturation index with and without? Does the minimum SPO2 drop significantly more without PAP? 

When you talk to doctor about discontinuing PAP you could ask about doing a trail of oximetry without PAP to see what it shows. Buying a recording oximeter isn't super cheap and would only really be useful as a test. Best would be to get recordings from days with PAP and days without so you can see the actual differences and know if PAP is helping oxygen levels.
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#38
RE: I'm slipping away...........
I wanted to take this opportunity to thank all of you that showed an interest in this thread and responded accordingly. Input from you all was greatly appreciated and highly valued. 

I will figure this out! It may not be as soon as I would like, but I will eventually. In the meantime, I'm back to using my machine just to be on the safe side. I won't ever be 100% compliant, but at least I'm trying. It is indeed, a journey of sorts. I do know where I'd like the road to take me, and I'll try my best to stay pointed in that direction. 

Again.....thank-you all!  Smile
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#39
RE: I'm slipping away...........
I'm 64 now and in many ways feel better physically and mentally than when I was younger. Off topic advise, look into (Dr. Mark Hyman) on how to rejuvenate your body and mind through diet and exercise.  It does make  difference, in sleep quality, and overall quality of life. I'm one of those who truly believe that food is medicine. That' it's extremely easy to loose weight, you would not believe it. The human body has amazing recuperative powers if you feed it what it needs to heal itself, and eliminate what destroys.

If anything, I think that with cpap, you have a better chance of living longer. I love my cpap, it loves me back. It helps me sleep longer and more deeply. I'd most likely be dead now without it. Really. (virtual pat on the back, hand in there brotha man!)
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#40
RE: I'm slipping away...........
(05-16-2021, 08:03 PM)Geer1 Wrote:
(05-16-2021, 05:27 PM)Big Guy Wrote: Would checking my blood / oxy. ratio before and after waking be sufficient? As it is right now, I check it just to see how I'm doing. There is no scheduled routine involved.

It has to be a recording type. Your oxygen levels change in a matter of seconds/minutes, checking it in the morning after waking tells you nothing about how your oxygen levels were affected by your breathing through the night. 

The key would be to see how O2 levels fluctuate if wearing PAP vs not wearing it. Is your average SPO2 the same or higher with PAP? How does your time spent below 90% compare? What is your oxygen desaturation index with and without? Does the minimum SPO2 drop significantly more without PAP? 

When you talk to doctor about discontinuing PAP you could ask about doing a trail of oximetry without PAP to see what it shows. Buying a recording oximeter isn't super cheap and would only really be useful as a test. Best would be to get recordings from days with PAP and days without so you can see the actual differences and know if PAP is helping oxygen levels.

I want to chime in on this idea.  I've been doing this - unplanned, but it's turned out to be the equivalent.  If I wake up an hour before my alarm I typically don't put my mask back on because I don't figure I'll fall back to sleep...and then of course I do fall back to sleep..each and every time  Anyway, I wear an O2 ring because my issue is explicitly the desats through the night.  And looking at the data, it's obvious when I was wearing the mask and when I wasn't.  Zero to one desat during the night while I'm wearing the mask followed by multiple desats in a very short time when I'm not wearing it.  When I have a minute, I'll dig up some good example charts.

The thing to note is that I would never see this if I took O2 readings right before and right after sleeping.  At those times, my O2 is solid.  So the overnight option is probably your best bet.
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