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UARS Treatment [Using Philips ASV]
#1
UARS Treatment [Using Philips ASV]
Hi.  Still sort of new here; posting on behalf of my son.  Absolutely desperate for help.  I hope I am doing this right - posting in the right place with the right info, etc.

First, thanks to sawinglogz for getting my son's machine fully supported on Oscar!

Second, I think I should give some additional info besides the Oscar screenshot.

My son was diagnosed in 2014 with UARS (Upper Airway Resistance Syndrome) via a thorough PSG that did NOT show any central apneas.  I point that out because it seems he's having a lot of centrals now, and we believe they are caused by the ASV.  His respiratory tech says to turn on the "Backup Rate" to get rid of these.  However, he tells me that this causes him a lot of problems.  The pressure "goes crazy" ... the pressure goes very high and his abdomen fills with air.  (I think he referred to it as "pressure cycling"?)  It also wakes him.  I understand that the Backup Rate detects and attempts to cut off central apneas; I assume a more proactive and effective approach is to prevent those centrals from happening in the first place, if possible.  Therefore I am considering looking into EERS(thanks again for that link, sawinglogz)
Ultimately, if the centrals persist, my son would even consider weaning off the PAP altogether.  He was doing better before starting it.

His therapist says that, other than the centrals, his "numbers are fine".  But he has felt worse since starting CPAP (around 2015) and then ASV shortly after.  My son and I believe that, even if we fix the Centrals, his RERAs (Respiratory Effort Related Arousals) will still be there.  It is my understanding that Oscar reports Flow Limitations, which MAY correlate with RERAs, but not necessarily.  A PAP machine simply can't measure the brain activity that reflects an arousal, obviously.  So one of our objectives is to reduce (eliminate) the RERAs.

Anyway, I've attached a screenshot of one night (a fairly nasty one , AHI 32).  I welcome any suggestions.  Again, I know the centrals are prominent, and may need to be eliminated, but ultimately we believe it's the RERAs (possibly indicated by Flow Limitations, or perhaps only detectable by looking at the actual waveforms - I don't know) ... that must be fixed.

Thanks


Attached Files Thumbnail(s)
   
- DIAGNOSED WITH UARS 2014
- Much worse since starting on CPAP/ASV.  100% Compliant.

 ADDITIONAL SYMPTOMS/ISSUES:
- Rhinitus: Possibly allergic, getting tests. Could be non-allergenic. 
- Nostrils appear to "collapse" when inhaling quickly (more than other people) 
- Expiratory palatal prolapse
- REGULARLY recurring dreams of pulling gum or taffy from mouth, throat, teeth; drowning; falling; chasing people; sand in mouth; nose and face covered by something; feel like head is breaking through a "membrane".
Upon waking: No refreshment; sweating; skin burning; tongue thrust between teeth
- Weird breathing when simply lying down, or falling asleep - like holding breath.
- SEVERE fatigue.  Struggle to even get out of bed, can't sustain physical or mental activities for long

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#2
RE: UARS Treatment
Bumping this thread to see if we can get you some help.
OpalRose
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#3
RE: UARS Treatment
How about posting a 15-20 minute zoom of a ca cluster please.
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#4
RE: UARS Treatment
Thanks OpalRose for the bump.
Gideon - I've attached a particularly nasty (CA) 15 min segment.


Attached Files Thumbnail(s)
   
- DIAGNOSED WITH UARS 2014
- Much worse since starting on CPAP/ASV.  100% Compliant.

 ADDITIONAL SYMPTOMS/ISSUES:
- Rhinitus: Possibly allergic, getting tests. Could be non-allergenic. 
- Nostrils appear to "collapse" when inhaling quickly (more than other people) 
- Expiratory palatal prolapse
- REGULARLY recurring dreams of pulling gum or taffy from mouth, throat, teeth; drowning; falling; chasing people; sand in mouth; nose and face covered by something; feel like head is breaking through a "membrane".
Upon waking: No refreshment; sweating; skin burning; tongue thrust between teeth
- Weird breathing when simply lying down, or falling asleep - like holding breath.
- SEVERE fatigue.  Struggle to even get out of bed, can't sustain physical or mental activities for long

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#5
RE: UARS Treatment
I understand that the Philips ASV has a lot more settings to fiddle with than the ResMed ASV. Please take another screen shot with the left panel scroll down so that we can see the Settings panel.

I'm confident you do not have true Cheynes Stokes Respiration, but there is something wrong with those breathing cycles that an ASV should handle.
Apnea Board Monitors are members who help oversee the smooth functioning of the Board. They are also members of the Advisory Committee which helps shape Apnea Board's rules & policies. Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#6
RE: UARS Treatment
Thanks for looking pholynyk.
Here are the settings.


Attached Files Thumbnail(s)
   
- DIAGNOSED WITH UARS 2014
- Much worse since starting on CPAP/ASV.  100% Compliant.

 ADDITIONAL SYMPTOMS/ISSUES:
- Rhinitus: Possibly allergic, getting tests. Could be non-allergenic. 
- Nostrils appear to "collapse" when inhaling quickly (more than other people) 
- Expiratory palatal prolapse
- REGULARLY recurring dreams of pulling gum or taffy from mouth, throat, teeth; drowning; falling; chasing people; sand in mouth; nose and face covered by something; feel like head is breaking through a "membrane".
Upon waking: No refreshment; sweating; skin burning; tongue thrust between teeth
- Weird breathing when simply lying down, or falling asleep - like holding breath.
- SEVERE fatigue.  Struggle to even get out of bed, can't sustain physical or mental activities for long

Post Reply Post Reply
#7
RE: UARS Treatment
I really know nothing about the Philips ASV, and not much more about the ResMed ASV - I use a simple AutoSet - so take everything I say with that caveat.

Some of the things that applies to a BiLevel is that EPAP is used to control Obstructives, and IPAP controls flow limitations and hyponeas, and too much pressure support can induce centrals. I think I've got that right.

The statistics show Patient Triggered Breaths at 100%, so I don't think a backup rate will help. My suggestion would be to increase the minimum EPAP by a cm or two, and reduce the IPAP somehow. I think the Philips has some controls similar to ResMeds Trigger and Cycle settings, but you would have to look at the Clinician's manual for your machine since thy don't show up in the Settings Panel. Click on the CPAP Setup Manuals in the black menu bar at the top for instructions on how to get one, if you don't have it.

That poor advice is all I have.

Perhaps a Mod could add [using Philips ASV] to your title to attract more knowledgeable help.
Apnea Board Monitors are members who help oversee the smooth functioning of the Board. They are also members of the Advisory Committee which helps shape Apnea Board's rules & policies. Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#8
RE: UARS Treatment
(06-22-2022, 06:35 PM)pholynyk Wrote: The statistics show Patient Triggered Breaths at 100%, so I don't think a backup rate will help.

No, that’s just because the backup rate is turned off so it’s only getting used as a BiPAP.

I really think the first thing to try is to set the backup rate to auto and reduce the max PS.

It might also help with his discomfort to limit the EPAP range so that it’s not swinging around very much.

But those centrals definitely need to be treated, and the backup rate is essential for that.

Since he seems to have an aversion to the backup rate, I would try to find setting that he can tolerate while awake and then watch a movie with the mask and machine on to acclimate and reduce some of the anxiety.
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#9
RE: UARS Treatment [Using Philips ASV]
Thank you, sawinglogz. That makes better sense of the backup rate question.
So reducing the PS should lessen the discomfort of the backup kicking in, as will reducing the range of EPAP.
The overall effect is to limit the maximum pressure which is leading to the aerophagia.
Apnea Board Monitors are members who help oversee the smooth functioning of the Board. They are also members of the Advisory Committee which helps shape Apnea Board's rules & policies. Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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#10
RE: UARS Treatment [Using Philips ASV]
I assumed in auto and ASV mode that backup rate would be on. I couldn't think of another reason for the OPs results.
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