Re: WTF is wrong with UARS treatment in the Netherlands

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Look into this message viewtopic.php?t=11993

You can translate the Dutch text by using DeepL.com

The pdf Brochure is in English it's explains all Flex .

Sometimes Flex could create also apnea so without using it, you could check if it makes differences.
Groet RuudJ
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Re: WTF is wrong with UARS treatment in the Netherlands

23
EstrellaJJ schreef: 07 sep 2023, 20:14 I started out with minEPAP at 6, minPS at 3.5 and then gave room for ASV to intervene with maxEPAP at 9 and maxPS at 10.
You're skipping a lot of steps, and therefore you don't have a good foundation to work with.

Consider this method:

Disable backup rate: BPM = OFF

Phase 1: Start with a reasonable EPAP (constant so minEPAP=maxEPAP), say 6. And start with a comfortable amount of PS, say 1, 2, or 3. If you are having > 3 obstructive apneas or hypopneas per hour (including clusters), increase EPAP (by 1cm), if not, go to phase 2:

Phase 2: On a weekly basis: Increase PS (constant, so minPS=maxPS) by 0,5 cmH2O. If you have > 3 central apneas per hour (including clusters), roll back PS and go to phase 3:

Phase 3: Give the ASV algorithm some room to work with, and increase maxPS by 1cm every day and observe the pressure swings during the night. If the PS hits the ceiling of maxPS a lot, then repeat this phase. If maxPS is about 10 you can consider going to phase 4

Phase 4: Increase EPAP by 1 every week until the pressure swings (between minPS and maxPS) and observe if the swings get less wide. Once raising EPAP doesn't decrease the wideness of the swings step to phase 5:

Phase 5 (optional): Take a watchPAT sleep study and check out pRDI

Keep a notebook where you keep track of when and why you transitioned between phases, and any other observations.
Na 3 jaar strijden eindelijk de diagnose UARS
Dit onderschrift is een eerbetoon aan zij die nog in stilte lijden omdat hun artsen volhouden dat het "tussen de oren" zit
Dreamstation BiPAP AutoSV, ResMed AirFit F30i

Re: WTF is wrong with UARS treatment in the Netherlands

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Thank you both. I will use this protocol above to titrate this.

I am reading about the BiFlex and noted the suggestion. Trying to get to one thing at a time (otherwise I struggle to see the difference in OSCAR). Going by the protocol above, I feel comfortable with where EPAP is now (at 10) and have scheduled to increase PS in a few days, so I will not make significant changes for a few days so I think perhaps a good time to experiment a bit with BiFlex options. Will do so.

I ramped up EPAP. I did feel subjective improvements up to EPAP of 10. Then at 11 I actually woke up with aerophagia (first time I feel this). So I will just stop at 10.

Interesting observations:
1 - https://youtu.be/ajj-vuGFBVU?si=TFGWhJIRELtjA_li this video is quite interesting. Imho it explains while I feel better with a EPAP of 10 vs. EPAP of 6 even though the Resmed machine was reporting near-zero AHI: unflagged events.
2 - I have had issues like dry mouth and mouth leaks (I am on nasal pillows) which have gotten significantly better with EPAP of 10 vs. EPAP of 6-7. Probably I started mouth breathing with lower pressures in response to airway collapses?

I have a question. With regards to CPAP-induced aerophagia, I often read it's the pressure being too high that causes it. But are we talking about EPAP or IPAP? Just trying to understand what happens if PS increases for constant EPAP (so unchanged EPAP but higher IPAP for PS)

EDIT: apparently it's IPAP causing aerophagia https://sleepres.com/wp-content/uploads ... ev-2.0.pdf

Re: WTF is wrong with UARS treatment in the Netherlands

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EstrellaJJ schreef: 10 sep 2023, 13:25 1 - https://youtu.be/ajj-vuGFBVU?si=TFGWhJIRELtjA_li this video is quite interesting. Imho it explains while I feel better with a EPAP of 10 vs. EPAP of 6 even though the Resmed machine was reporting near-zero AHI: unflagged events.
Yep, flagging is very weak on all machines.
EstrellaJJ schreef: 10 sep 2023, 13:25 2 - I have had issues like dry mouth and mouth leaks (I am on nasal pillows) which have gotten significantly better with EPAP of 10 vs. EPAP of 6-7. Probably I started mouth breathing with lower pressures in response to airway collapses?
Correct. When your body experiences respiratory stress, this can trigger all sorts of things: tongue movement, jaw thrusting etc which can all break the seal between the base of the tongue and the soft palate resulting in release of air and therefore dry mouth.
EstrellaJJ schreef: 10 sep 2023, 13:25 EDIT: apparently it's IPAP causing aerophagia https://sleepres.com/wp-content/uploads ... ev-2.0.pdf
As far as I am concerned, VCOM is bunk. They use the cloak of science and a lot of woo to make their case, but nothing makes logical sense. Note that the linked paper is a white paper, there has been no peer review, no scientific 3rd party discussion etc. There are just so many smells about it, I'd be surprised if they still exist in a year. They'll have taken the money and ran. Their self-application to the FDA is fraudulent (*), they've described their product as a "connector" while it is obviously a cheat device that strongly distorts the functioning (and data collection so you can't trust OSCAR data anymore!) of the xPAP device it is attached to.

(*) self-application means that they just submitted their form to the FDA. Their formal status is "FDA Registered" which does not mean much. It does not mean mean that it is "FDA approved" which is an active investigation on the part of the FDA. As it stands, FDA has not checked their homework. Source:
When a facility registers its establishment and lists its devices, the resulting entry in the FDA's registration and listing database does not denote approval, clearance, or authorization of that facility or its medical devices.
I found this quote quite amusing. I love how it says "regulatory requirements of the FDA" making it sound all official but it just means submitting a form, no questions asked 🤣 They're probably going to have more of a hard time in EU etc.
Since introducing the V̇-Com™ at APSS, SleepRes has had requests for V̇-Com™ from all over the globe. While V̇-Com™ has met the regulatory requirements of the FDA here in the US, it is now on a similar regulatory path in other countries. V̇-Com™ is not a therapy itself but an accessory to PAP therapy which provides comfort to new and struggling patients onPAP.
As far as aerophagia is concerned, MAP (mean airway pressure) is the driving factor.
Na 3 jaar strijden eindelijk de diagnose UARS
Dit onderschrift is een eerbetoon aan zij die nog in stilte lijden omdat hun artsen volhouden dat het "tussen de oren" zit
Dreamstation BiPAP AutoSV, ResMed AirFit F30i

Re: WTF is wrong with UARS treatment in the Netherlands

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Hey guys, one question

I admit I was a bit eager and tried to use higher PS immediately. I understand why it’s not recommended lol, had plenty of TECSA.

I understand I have to go slowly with raising PS. Once a week was mentioned above.

Can you elaborate on how to manage CAs while one is increasing PS? What was your experience? do I want to roll back PS as soon as I see a cluster pop up or is it fine to allow some small number of centrals while one is getting accustomed to higher PS?

I’m just confused about how to go about raising PS gradually basically

Re: WTF is wrong with UARS treatment in the Netherlands

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Please give me some numbers, but sometimes too much PS is just too much. At the same time, if your CAs aren't spread evenly throughout the night, it may not be a problem. Normally I don't like screenshots, but in this case screenshots of the event bar can help.
Na 3 jaar strijden eindelijk de diagnose UARS
Dit onderschrift is een eerbetoon aan zij die nog in stilte lijden omdat hun artsen volhouden dat het "tussen de oren" zit
Dreamstation BiPAP AutoSV, ResMed AirFit F30i

Re: WTF is wrong with UARS treatment in the Netherlands

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persluchtpiraat schreef: 21 sep 2023, 15:21 Please give me some numbers, but sometimes too much PS is just too much. At the same time, if your CAs aren't spread evenly throughout the night, it may not be a problem. Normally I don't like screenshots, but in this case screenshots of the event bar can help.
Yes sure no problem! (screenshots in good resolution on laptop, may be blurry on phone) And much appreciated!

So yesterday looked like this: https://imgur.com/a/Pywr5wJ

But keep in mind most of those H and most of those CAs are not real. Most of them look like this: https://imgur.com/a/qMSvIJj

And this is also true for the hypopneas: https://imgur.com/a/DxIFw3w

But the late-night CAs cluster seem real: https://imgur.com/a/HLULZVn

This pattern of late night CAs cluster is consistent. However it's making it really hard for me to understand what to do with PS. For example, this is PS of 4.5, so quite high, and yet the CAs are there but not worse: https://imgur.com/a/nAFl5mZ

What is clear to me is the following:
- EPAP of 4 seems right for me. I never had an issue of many obstructive events at this level. I had some minor gains at higher pressures but minimal. Not worth it imho
- PS of 3 is too little. I just have a bad night, unpleasant, heart rate looks just like it does without CPAP (too high spikes)
- PS of 3.5 and above we start talking of more pleasant sleep. This is also when late-night CAs start to emerge. Anything above 4.5 and things start to look a bit like a trainwreck of CAs. In between 3.5 and 4.5, it's not clear at all what is ideal. Sometimes things can be bad CAs in between 3.5 and 4.5, but with a very inconsistent pattern.

My plan:
- start at EPAP 4, PS of 3.5
- stick with each setting for at least a week;
- try raising PS by 0.5 per week;
- see if any progress in the late night cluster of CA.

Re: WTF is wrong with UARS treatment in the Netherlands

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EstrellaJJ schreef: 21 sep 2023, 17:32 But keep in mind most of those H and most of those CAs are not real. Most of them look like this:
I agree. So far no problem at PS = 3,5.
EstrellaJJ schreef: 21 sep 2023, 17:32 But the late-night CAs cluster seem real:
What do do the low amplitude "valleys" look like? Can you post your SD card on Wetransfer or something like that?
EstrellaJJ schreef: 21 sep 2023, 17:32 - EPAP of 4 seems right for me. I never had an issue of many obstructive events at this level. I had some minor gains at higher pressures but minimal. Not worth it imho
I wouldn't be so sure. There may be more airway stabilization advantage with higher EPAP, but I'd need to look at the detailed data. That would be consistent data, like a week at one setting.
EstrellaJJ schreef: 21 sep 2023, 17:32 For example, this is PS of 4.5, so quite high, and yet the CAs are there but not worse:
Not a total disaster, it may smooth out over time.
EstrellaJJ schreef: 21 sep 2023, 17:32 My plan:
- start at EPAP 4, PS of 3.5
- stick with each setting for at least a week;
- try raising PS by 0.5 per week;
- see if any progress in the late night cluster of CA.
Sounds like a good plan!
Na 3 jaar strijden eindelijk de diagnose UARS
Dit onderschrift is een eerbetoon aan zij die nog in stilte lijden omdat hun artsen volhouden dat het "tussen de oren" zit
Dreamstation BiPAP AutoSV, ResMed AirFit F30i

Re: WTF is wrong with UARS treatment in the Netherlands

33
I am travelling this weekend so I will just proceed to have a week of data and then perhaps put that in SleepHQ for better sharing or find a way to upload SD card information! Thank you so much for looking into this

With regards to EPAP, I am actually down to start with 5 and have a week with that, sometimes with lower pressures the nose tends to close a bit but I don't have that problem at 8 or above.

So I will proceed to have a week at 8.5/5 and come back!

Re: WTF is wrong with UARS treatment in the Netherlands

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Hey how you all doing...

I have been sleeping with ranges of about EPAP 4-5 and PS of 3.5 - 4.5. Also a few experiments here and there (especially with naps and weekend nights where I am not afraid of experiments going wrong). Mostly this in the last two weeks. Before these last two weeks I have been trying higher pressures (7-8-9-10-11-12-13) with no success

Observation: PS of 4.5 is the highest I can go before CAs start to become an issue. At EPAP 4, PS 4.5 still no issues pretty much (except that I still wake up tired).

Still no signs of progress to be honest. I have even tried nuclear experiments during naps (as in, what happens if I crank up PS to 8 with timed breaths) but cannot observe improvement. I think PS 8 was too much (you can see my respiratory rate gets suppressed down to 10-11) but perhaps 7 would be fine...another experiment to try

I have a wetransfer of the last month of OSCAR (https://we.tl/t-XQ5NcEEdjl). Just gonna leave this there. I cannot for the life of me understand what is going wrong here...getting a bit desperate sometimes.

By the way I tried BiFlex combinations...I like it at 2 for comfort, but cannot feel / see any difference from various modes of it

I have a MAD device by now by the way. I have slept with it already (last couple of nights) at low advancements (2 and 3). Good news is zero discomfort with it (no pain, no weird jaw in the morning, I just take it off and feel nothing) - but also no symptoms improvement with it...this was in combination with PAP

I think a lot of things are getting a bit mixed up here so what I plan to do now is focus on the MAD (I will advance to 4 or 5 tonight) and observe if any improvement at all. Even if I can't use it long-term etcetera at this point I just need something to work to any extent to validate any direction or approach

Re: WTF is wrong with UARS treatment in the Netherlands

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EstrellaJJ schreef: 02 okt 2023, 09:46 EPAP 4, PS 4.5
EPAP is very low here. That probably doesn't stabilize your airway much. As a result, the way you react to PS can become quite volatile. I'd keep PS at a conservative level and increase EPAP.
EstrellaJJ schreef: 02 okt 2023, 09:46 what happens if I crank up PS to 8 with timed breaths
Timed breaths have no place in our use case.
EstrellaJJ schreef: 02 okt 2023, 09:46 I have a wetransfer of the last month of OSCAR (https://we.tl/t-XQ5NcEEdjl). Just gonna leave this there. I cannot for the life of me understand what is going wrong here...getting a bit desperate sometimes.
Please mention some days and intervals where you know that you are asleep, that you would like to get attention for. That makes it much more actionable for me.
Na 3 jaar strijden eindelijk de diagnose UARS
Dit onderschrift is een eerbetoon aan zij die nog in stilte lijden omdat hun artsen volhouden dat het "tussen de oren" zit
Dreamstation BiPAP AutoSV, ResMed AirFit F30i

Re: WTF is wrong with UARS treatment in the Netherlands

36
I don't have much issues with compliance (I sleep with CPAP pretty much the whole night, maybe a few mins of interruption here and there) so as long as it's night time and it's a large block, I am sleeping with CPAP. All of these days I am tired so to be honest doesn't matter much where you look

Probably makes sense to look at last two weeks so 18-24th September and 25th-1st Sep-Oct. Just daytime naps are to be ignored and can mess u a bit with settings summary on the left. This last week I also have pulse rate so maybe that helps. I am desperately looking for anything at all in OSCAR that can be seen as a problem, generally just lost where to look and what to see :(

higher pressures were tried before then (with PS around 2-3.5) but with no success, only thing I can think of now is either to try again higher EPAP but with PS of 4.5

The only thing I can point out is that with higher PS (4.5) than before (3.0) I do not wake up to remove the mask. I used to do that at PS 3.0. So that is one improvement I guess. I can spend the whole night with the mask on now.

That and maybe full face time mask because it's full of leaks here despite mouth tape

Well let me try to move on to "phase 3" and increase maxPS to 5.5...perhaps that's one way to increase PS a bit without causing centrals...and then phase four with the EPAP

Re: WTF is wrong with UARS treatment in the Netherlands

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I use Leukopor plaster 5 cm wide and so 15 cm long cut from a roll of 9.2 meters. I use two strips and stick them crosswise from cheek to chin across the mouth. Then also two chin bands. Over that the Resmed Airfit P30i nasal caps.

My leakage then varies between 0 and 20 liters per minute. Since I have a Resmed, it takes into account 24 liters per minute. Above that is too much leakage.
Groet RuudJ
Medewerker AV-Kenniscentrum
ADEM BEWUST, WANT HET LEVEN DUURT MAAR KORT.
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Re: WTF is wrong with UARS treatment in the Netherlands

39
EstrellaJJ schreef: Just a random thought, maybe I have been too stubborn about the nasal pillows (I love them). Mouth does not stay close clearly (not with mouth tape, not with chin straps, not with cervical collar etcetera).

let me try a full face mask and see what happens
:') this sounds way too familiar ;) O:-)

If you manage to fix the leaks, please let me know how ;)
Full face does seem to help me a bit.
Btw, if you are having issues with the ventilation in the front of the mask, I hate it, you can create a diy diffuser with the intake filter of a resmed machine or something similar. Just make sure you don’t block it too much, I check by feeling the air temp. It rises when exhaling and just before inhalation it is already cool again, so I figure it should be OK.
EstrellaJJ schreef: 10 sep 2023, 13:25 I feel comfortable with where EPAP is now (at 10) and have scheduled to increase PS in a few days,

I ramped up EPAP. I did feel subjective improvements up to EPAP of 10. Then at 11 I actually woke up with aerophagia (first time I feel this). So I will just stop at 10.

Interesting observations:
1 - https://youtu.be/ajj-vuGFBVU?si=TFGWhJIRELtjA_li this video is quite interesting. Imho it explains while I feel better with a EPAP of 10 vs. EPAP of 6 even though the Resmed machine was reporting near-zero AHI: unflagged events.
2 - I have had issues like dry mouth and mouth leaks (I am on nasalpillows) which have gotten significantly better with EPAP of 10 vs. EPAP of 6-7. Probably I started mouth breathing with lower pressures in response to airway collapses?
I was wondering, why did you stop using Epap 10cmH2o in the first place? You were actually quite enthusiastic about it. And apparently you also made quite some progress by moving to Epap 10cmH2o…
IIRC, Epap at 4cmH2o is the equivalent of normal pressure for healthy people, aka it does pretty much zero for people that do have airway issues.
ResMed Aircurve 10 BiLevel VAuto, 9.0-15.0 PS4.0 - n20 neusmasker - slanghengel - Fixomull stretch mondtape - cpap hoofdkussen - Work in Progress (tm)

Re: WTF is wrong with UARS treatment in the Netherlands

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Hi both thanks for responding :sob:

So my mouth leaks are unstoppable to be honest. No amount of tape or anything. Tongue is theoretically in the right place when I fall asleep. Weird things happen as the night progress

Still I tried to make nasal pillows work so hard because I was completely traumatized when I tried F&P full face mask Vitera. There is something clearly about F&P, i don't know but I rebreathed my own CO2 or something because the day after I had symptoms of that. Interestingly enough, it also happened with F&P Nasal mask. Basically now if I see F&P or full face I get PTSD.

But let me try again with this F30i thing I got.

For the EPAP 10, to be honest I think sometimes I speak too early. Pardon me, my mind can be a bit all over the place, it's full crisis mode to be honest. Improvements were not really sustained at all, maybe they were all in my head and then got also aerophagia - the painful kind.

I will try EPAP 6 and PS 4 tonight. Theoretically that should be something at least remotely helpful assuming no leaks