Feel good markers other than AHI

I am in a strange situation and like to hear some feedback

I had been on hose therapy for 7 months now and after first 4 months was able to determine what would work for me. Last 2-3 months have been a game changer for me after finding the narrow pressure change that was helping me have good days. AHI for me was deceiving since the beginning of the therapy because my AHI numbers have always been <1 from DAY 1 (actually 7 month average is roughly 0.65). Fortunately I have been tracking 'feel good' religiously from day 1 which eventually helped me pin down the right pressure setting and therapy. More on that journey is included in my last comment of this thread (viewtopic.php?f=1&t=156504&p=1219284). So I had a satisfactory 2-3 months. Here is my NEW problem ..

Exactly a week ago I had partial thyroidectomy to get rid of a 2 inch nodule on my right side of thyroid gland. Part of the surgery my right thyroid gland had been removed. Now am finding myself with rebounding symptoms like last time (as explained in the other thread) which took me couple months to come to a conclusion that I need to tweak the pressure setting. My AHI numbers in the last week stayed the same as in the past i.e. consistent around 0.5. I strongly believe that this time too it's a matter of adjusting pressure but instead of trial error spanning weeks am wondering if there are any specifics things to look for and analyze on a finer level from the sleep data that would get me to the right pressure quicker.

I do realize that the surgery itself could contribute to my condition but I can surely relate how I feel to the rebounding symptoms I experienced in the past because of not using the right pressure setting and which resolved after narrowing the pressure setting. While am open to any suggestion my question is specific around what to look for in the data outside of AHI that will tell the difference in terms of what pressure should I end up with.

Any feedback is appreciated. Thank you!!

I guess am on my own on this?

fog.apnea wrote:I guess am on my own on this?

No, not on your own. I wish I had something useful to suggest. There are many knowledgeable people on this site, and (hopefully) one or more will be along to offer advice. Hang in there.

fog.apnea wrote:I am in a strange situation and like to hear some feedback

I had been on hose therapy for 7 months now and after first 4 months was able to determine what would work for me. Last 2-3 months have been a game changer for me after finding the narrow pressure change that was helping me have good days. AHI for me was deceiving since the beginning of the therapy because my AHI numbers have always been <1 from DAY 1 (actually 7 month average is roughly 0.65). Fortunately I have been tracking 'feel good' religiously from day 1 which eventually helped me pin down the right pressure setting and therapy. More on that journey is included in my last comment of this thread (viewtopic.php?f=1&t=156504&p=1219284). So I had a satisfactory 2-3 months. Here is my NEW problem ..

Exactly a week ago I had partial thyroidectomy to get rid of a 2 inch nodule on my right side of thyroid gland. Part of the surgery my right thyroid gland had been removed. Now am finding myself with rebounding symptoms like last time (as explained in the other thread) which took me couple months to come to a conclusion that I need to tweak the pressure setting. My AHI numbers in the last week stayed the same as in the past i.e. consistent around 0.5. I strongly believe that this time too it's a matter of adjusting pressure but instead of trial error spanning weeks am wondering if there are any specifics things to look for and analyze on a finer level from the sleep data that would get me to the right pressure quicker.

I do realize that the surgery itself could contribute to my condition but I can surely relate how I feel to the rebounding symptoms I experienced in the past because of not using the right pressure setting and which resolved after narrowing the pressure setting. While am open to any suggestion my question is specific around what to look for in the data outside of AHI that will tell the difference in terms of what pressure should I end up with.

Any feedback is appreciated. Thank you!!

I also need to look at my flow limitations. I find that even with lowish AHI I still may not that fully rested feeling unless my flow limits are controlled. At my sleep test my AHI was 17 or 18 (Cannot recall which), but my RDI was 56. I can have my AHI treated at a pressure of 10, but to fully treat myself and keep the RDI in the 2-3 range I need 13 cm/h2o.

I don't know that I would go chasing pressure settings based on what very well could be related to post surgical trauma to the tissues that just needs time to heal up. You could be chasing a variable every night due to the healing process.
I know you seem to like a tight range but if it were me I would just let the machine sort out what it thinks it needs to do and go from there....as in open up the range a bit if using auto adjusting mode.

But that's just me and I am a bit lazy and I tend to take the easy way out for most things because for the most part it has always worked well for me so why change?

All I need for data is AHI, Total leak rate, (So the machine can see the true data) and maybe Snore! I'm not guessing how the machine works, I know it does, not planning on on joining any XPAP debating clubs. I just use mine to stop Sleep Apnea, which it does effortlessly. K.I.S.S, Rules! Jim

Some benefit from a pressure slightly higher than what fixes AHI in order to keep the airway as constantly stable as possible. Those people, I believe, tend to do best on a straight CPAP pressure at the level needed to do that, since such ones don't always do well with depending on an APAP, or on home-machine-reported AHI numbers, to get/keep them where they need to be.

I loves me my APAPs, but hey, they are aimed smack dab at the middle of the bell curve, so they don't always do their thing for everybody. And I love it when users self-titrate too, but AHI isn't always enough info to do that most effectively for everyone. Many docs, I understand, routinely prescribe a few cm extra in cases in which it didn't seem that the tech was able to titrate the breathing to so-called perfection for a light sleeper with UARS-ish OSA, even when AHI was well-titrated into nothingness.

That said, if I were especially sensitive to changes in pressure, I might choose to let things ride after a surgery instead of chasing anything temporary, as others said above.

TASmart wrote:
I also need to look at my flow limitations. I find that even with lowish AHI I still may not that fully rested feeling unless my flow limits are controlled. At my sleep test my AHI was 17 or 18 (Cannot recall which), but my RDI was 56. I can have my AHI treated at a pressure of 10, but to fully treat myself and keep the RDI in the 2-3 range I need 13 cm/h2o.

Looking at RDI makes sense but it doesn't seem to be affecting me. In my sleep study my RDI was 37 and AHI 35 so not a drastic difference. In the SH data, if my average AHI is 0.5 then UA+CA+RERA barely add up 0.2 and rarely go over 0.5 .. again if I go purely by the reported numbers. I always had to depend on my feel factor compared to the contributing variables (AHI/sleep quality/medication/diet/stress etc.. ) and could only find right pressure as the leading (and likely only) factor to the FEEL good factor.

Thank you for the feedback. I am going to post couple more replies here to add more info but for now I have decided to wait it out few days to feel and ride out the basic expected post surgery symptoms.

Pugsy wrote:I don't know that I would go chasing pressure settings based on what very well could be related to post surgical trauma to the tissues that just needs time to heal up. You could be chasing a variable every night due to the healing process.
I know you seem to like a tight range but if it were me I would just let the machine sort out what it thinks it needs to do and go from there....as in open up the range a bit if using auto adjusting mode.

But that's just me and I am a bit lazy and I tend to take the easy way out for most things because for the most part it has always worked well for me so why change?

Honestly am scared of leaving a wide pressure range given my personal experience. One of the reason I mentioned that am exception in this case is because it seems obvious for most that keeping the min/max pressure reasonably wide open and letting the device in the apap mode do its things clearly works but for me it didn't. My AHI no matter how wide or narrow I keep the min/max settings (I tried several combinations between 8-13) it has always been the same (<1) so I settled on what was making me FEEL good.

You are right regarding the post surgical trauma. It is too early to say anything but since I posted this thread, last 2-3 days have been near normal and better than my pre-operation times (knock wood), so for now I am still at the same pressure settings as pre-op and didn't want to tinker until I recover from the basic postop symptoms. It's been 11 days now and my pain/swelling etc is almost gone. I am still under the 2-3 week restrictive period on what I can/cannot do. I had right lobectomy (partial thyroidectomy) with left side of the gland intact, so I do have some upcoming challenges to see how my body responds in leveling TSH as well as Calcium (due to possible disturbances to the parathyroid glands during the surgery) which could take couple months to be sure of.

I will wait it out a few days and follow up with updates. Thank you for the feedback!!

If you don't do well with a wider range then don't use a wider range. Hurts nothing to use a tighter range as long as you understand the limits that come with it. Like sometimes the machine might want to go higher but can't...and the reason it might want to go higher may or may not be all that important. For some people the going higher creates more of a problem than what the machine is wanting to kill might be causing.
For those people it makes perfect sense to not let the machine go to where it might be wanting to go.

jnk... wrote:Some benefit from a pressure slightly higher than what fixes AHI in order to keep the airway as constantly stable as possible. Those people, I believe, tend to do best on a straight CPAP pressure at the level needed to do that, since such ones don't always do well with depending on an APAP, or on home-machine-reported AHI numbers, to get/keep them where they need to be.

I loves me my APAPs, but hey, they are aimed smack dab at the middle of the bell curve, so they don't always do their thing for everybody. And I love it when users self-titrate too, but AHI isn't always enough info to do that most effectively for everyone. Many docs, I understand, routinely prescribe a few cm extra in cases in which it didn't seem that the tech was able to titrate the breathing to so-called perfection for a light sleeper with UARS-ish OSA, even when AHI was well-titrated into nothingness.

Yeah after going through few threads by others with similar experiences with pressure, it appears that cpap mode works better for some though in the minority. I am happy with the narrow pressure range now but would like to give the cpap method a try after a while.

jnk... wrote: That said, if I were especially sensitive to changes in pressure, I might choose to let things ride after a surgery instead of chasing anything temporary, as others said above.

Agreed and am doing that as I indicated in the above replies. Thank you for the feedback!!

I believe that it is an important principle to understand that AHI was chosen by consensus by the OSA-doc community as the measurement tool of choice ONLY because it is a relative EASY way to prove to insurance that an empirical measurement was used to prove that there is a problem and that a treatment is making a difference with that problem. That does NOT mean that AHI accurately represents the exact problem or accurately reflects how well the problem is being treated. It is a blurry low-resolution snapshot that hints in outline at what is happening, but it is not the actual problem or what is being fixed.

The OSA-treatment process in the U.S. is (1) prove to a payer something is wrong with the patient, (2) prove to the payer that something well-accepted is making things less wrong for the patient, then--and this is the step most often missed--(3) customize the treatment to give the patient the best quality-of-life outcome. AHI is very valuable for the first two steps. It also has some value for the third. But when we self-tweak as patients, it is useful for us to remember that AHI (and especially home-treatment-machine-reported "AHI") is not a perfect tool, just a useful one for trending purposes--and even then mostly as a way to help make sure that none of our self-tweak explorations is actually making things worse in some substantial way.

On the other hand, the breath-by-breath analysis possible using programs such as SH and as conducted by some educated members of this forum can provide much more detailed information for having some idea what is going on mechanically in the upper airway, which can hint at ideas for pressure changes for those having exceptional difficulties much more accurately than AHI alone. Still, the basic overall choice for the mechanical aspects of breathing is either higher pressure or lower pressure, and the effects those changes have on sleep itself can only be assessed by how we feel (preferably assessed by us BEFORE we look at our AHI numbers from the night before, in order to prevent any self-fulfilling-prophecy syndrome), since we don't have the tools ourselves to see what is going on in the brain. Yet.

(My views are occasionally less than standard. )

fog.apnea wrote: ↑

Fri Feb 02, 2018 8:19 am

TASmart wrote:
I also need to look at my flow limitations. I find that even with lowish AHI I still may not that fully rested feeling unless my flow limits are controlled. At my sleep test my AHI was 17 or 18 (Cannot recall which), but my RDI was 56. I can have my AHI treated at a pressure of 10, but to fully treat myself and keep the RDI in the 2-3 range I need 13 cm/h2o.

Looking at RDI makes sense but it doesn't seem to be affecting me. In my sleep study my RDI was 37 and AHI 35 so not a drastic difference. In the SH data, if my average AHI is 0.5 then UA+CA+RERA barely add up 0.2 and rarely go over 0.5 .. again if I go purely by the reported numbers. I always had to depend on my feel factor compared to the contributing variables (AHI/sleep quality/medication/diet/stress etc.. ) and could only find right pressure as the leading (and likely only) factor to the FEEL good factor.

Thank you for the feedback. I am going to post couple more replies here to add more info but for now I have decided to wait it out few days to feel and ride out the basic expected post surgery symptoms.

Just wanted to follow up as indicated in my earlier response that the surgery did have an impact the 1st week post surgery. Assuming that I might need different pressure setting as the thyroid surgery (lobectomy) was related to the neck area and close to the wind pipe, I tried few settings (i.e. tweaking low/high pressure and cpap mode) but turns out my pressure needs haven't changed from my pre-surgery as I have been back to the setting prior to my surgery and pretty content with the current state.

I want to thank all that have responded to my questions on this thread.

Great!

Thank you for the update.

Are you able to post SleepyHead screen shots so we can look at your your settings and results you are getting? Besides AHI I like to look at the Snore and Flow Limitation graphs to see what they are doing.