Re: WTF is wrong with UARS treatment in the Netherlands

22
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

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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

29
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

31
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!