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UARS
RE: UARS
Not independently of messing with other changes so I think that is my next step.  What do you watch for in terms of expiratory pressure intolerance?  I think it should be fine, as my initial APAP settings were 8 with EPR3 and the machine was regularly at 11-13, so much higher expiratory pressures.
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RE: UARS
(12-16-2019, 05:37 PM)tarah Wrote: Not independently of messing with other changes so I think that is my next step.  What do you watch for in terms of expiratory pressure intolerance?  I think it should be fine, as my initial APAP settings were 8 with EPR3 and the machine was regularly at 11-13, so much higher expiratory pressures.

Really just comfort.

And if you're prone to it (I don't recall; I'm not), maybe aerophagia?

I was thinking slight tweaks there (0.2, 0.4); nothing dramatic.
Caveats: I'm just a patient, with no medical training.
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RE: UARS
Yes, I will try 0.2 adjustments at a time and see what happens.
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RE: UARS
(12-16-2019, 04:25 PM)tarah Wrote: Backed off of PS from 6.0 to 5.6 to decrease the CAs.....that was good. Your ratio E:I normalized an your RR/2 backed to lower threshold at 6.9; better MV.  Tried below 5.6 and it results in too many wakeups.....I think you would have less wake ups by increasing EPAPmin; PS would not be the primary case, at first. However you would do have this room, 5.6 to 5.0, to work. But not at same time as EPAPmin.

I have been feeling remarkably good the past 2 weeks (4 weeks post surgery).  I can only hope that it continues as the healing improves.  As far as sleeping at night, I do feel like I'm getting good chunks of sleep.  Too many wakeups in the early morning hours, but again, hoping that improves as my brain calms down about it being safe to breathe. .....well, this could happen as plus. However, you would not need wait to proper balance your EPAPmin x PS; responses are overnight...I also tried limiting the IPAPmax to EPAPmin+PS and it was not good.  A fair amount of OAs.....maybe, because you  would not adjust EPAPmin, yet.

Here's the latest.....good chart, however with too many arousals/awakenings in my opinion, which, again, would resolve, I hope, by increasing EPAPmin.
2;47 (15s arousal): no straighforeward cause, but would not be respiratory effort-driven. You could choose among these, maybe: [b]PLMS, noise, tactile, pain, vibration, and hormone issues.
4:34:30: this would be a 2.5 minutes arousal > awakening driven by respiratory effort, likely within REM.

[/b]

Hi, tarah
Keep doing a good job. Congrats.

atb



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RE: UARS
(12-16-2019, 04:36 PM)slowriter Wrote: Have you tried raising the min EPAP at all?

slowriter, this the way, i agree



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RE: UARS
(12-16-2019, 08:21 PM)tarah Wrote: Yes, I will try 0.2 adjustments at a time and see what happens.

good way to go



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RE: UARS
Hello all,

I have not posted for some time, just trying to wait out the healing after my nose surgery and see where I'm at.  I am still having some nasal congestion and the ENT did confirm she had not been very aggressive with turbinate reduction, and may need an office procedure again to slightly shrink them a bit more.  She can tell the right side is more generous and that is subjectively my worst side at night.

The past few nights, I have been using decongestant at my ENT's recommendation.  Clearly it is changing my PS needs and I am continuing to lower the PS to eliminate CA's.  Subjectively, I am still waking pretty frequently and the problems are not at an acceptable level, but it is much, much better than before surgery.

I went to see a new possible sleep doctor yesterday and I am still in shock.  For 1.5 hours she went OFF about everything I had been through and tried.  She said my original sleepdoc should never have given me a cpap after a homestudy, that she has no idea if I actually have a breathing problem at night, data from OSCAR is completely useless, said I was probably inducing all the problems by very irresponsibly purchasing my own BiPAP.  She said maybe the reason I got such an improvement from cpap was because sometimes when a DR tells you that you have something, that you start to internalize it and believe it and then treatment works.  WHAT??? I didn't know what to say.  I actually went in ready to agree to an overnight study, first just needing to establish a trusting relationship.  I left in tears and am still trying to process it all today.

Here's a screenshot of where I am.  Too many wakeups for sure, like I remember probably 6-8 times of tossing and turning.  And then awake for the day at 4:45 a.m.  But before surgery it was waking up all night every 15 minutes.


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RE: UARS
Damn. Sounds like maybe that's the wrong doctor ;-)

I've come to observe that the best doctors spend more time listening than talking, or lecturing.
Caveats: I'm just a patient, with no medical training.
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RE: UARS
Unfortunately that is the mentality with most of the sleep related personnel I have talked to. What is recommended on these forums falls in line with a new method of thinking regarding treating flow limitations with higher pressure support. There is evidence to support doing so but it has not become mainstream medical and most doctors, sleep therapists, technicians etc are taught you only need bilevel if you have significant disordered breathing due to disease etc, not just some remaining flow limitations from partially treated sleep apnea.

Pressure support is in essence a form of ventilation and you do need to be a bit careful with it. Too high can cause issues, inducing central apneas is the first step then you approach hypocapnia if reducing the CO2 levels even further. The effects that these machines can have is the reason that they require a prescription and why doctors are taught what they are. I've seen a few charts now where people have used too high of PS and I believe it needs to be avoided as much if not more so than too low of PS.

You sort of deserved a slap on the wrist (as does every self titrating CPAP user) but on the other hand the only reason you were doing so is because mainstream medical is failing at providing proper sleep diagnosis and treatment.

Regarding your OSCAR data your flow limitations are small, infrequent and you are having central apneas. I didn't look through all the pages of information but see there has been some conflicting thoughts on whether your PS needs to go higher or lower. I believe your PS is too high, I see a few graphs from back when PS was only 3 and everything looked fine there. On one of your PS 4 graphs there were periods of reduced respiratory drive that I think you thought were an issue but in reality it may have been because of PS level. Another post showed some flow limitations on breaths which led to recommendation to increase PS but I believe those breaths were in rem sleep and some bad looking breaths in rem is normal. I think I would drop PS all the way back to 3 for now to see what things look like. For some reason you decreased EPAP back to 5 and had some more obstructive apneas, you should increase it back to 6.

The squiggly lines you asked about numerous times are called cardiogenic oscillations, it is your heart beat being imposed on your flow rate chart due to being in a relaxed state after exhalation and they are visible because your heart beat varies lung capacity which shows up on CPAP data. They aren't an issue and when you see longer pauses with these cardiogenic oscillations it is signs that your body is slowing its respiration rate/taking a pause. Some people(myself included at one point) think those long breaths are possibly short obstructions but in reality if the machine can pick up your heart rate in the flow data then there cannot be any current obstructions and these long breaths have to be central in nature. Central apneas are caused the same way and are just longer periods of this same phenomenon.

I think you should try EPAP of 6, PS of 3 and wait a while to see how things are going. It is probably still going to take a bit longer to fully recover from surgery which is when I would consider adjusting things further.  Once fully healed then you can start adjusting settings further and if you want to work with doctor and get some real data to back up UARS diagnosis then ask for a titration study. Tell the doctor you were just trying to sleep well and that you don't want to argue about what you should or shouldn't be doing and that you already have the machine and would now like clinical evidence to back up what setting you should be using. Specify that you want the titration study to be focused on looking for and treating any RERA's present. Either you will come away with them realizing that you may need the slightly higher PS to deal with RERA's or you will come away with the knowledge that your arousals are not due to breathing and that you need to focus on other aspects of sleep.
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RE: UARS
I asked earlier whether you tried raising the trigger. If you haven't, do that; it might resolve the CA reports.
Caveats: I'm just a patient, with no medical training.
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