UARS Treatment [Using Philips ASV]

[SenatorBirch]

Bumping this to see if anyone is able to offer assistance ...

[SenatorBirch]

Hi. A while back I posted a graph to see of anyone could have a look. Haven't seen a response yet, after a bump, so I figured I'd try a new topic to see if I can catch someone's attention.
(sorry if I'm doing something wrong)

The link below should go to the post. 

Any help would be greatly appreciated! 

https://www.apneaboard.com/forums/Thread...#pid490245

[OpalRose]

[Sleeprider]

SenatorBirch, it appears that a higher EPAP minimum pressure going to be needed to clear up the obstructive component. Philips auto algorithm for obstruction is not very good and a minimum pressure of 4.0 is clearly not resolving the obstruction, and the machine is not responding appropriately for what we see here. change EPAP min to 6.0 and be prepared to go a bit higher. I would suggest PS min 4.0, PS max 5.0 if that can be set.

[SenatorBirch]

Thanks SleepRider.  My son finally got around to trying these settings. His AHI actually increased. (from consistently under 10 to consistently over 10)

I've posted a shot again from last night.

He thinks he should focus on eliminating the centrals before trying to deal with the UARS.

Keep in mind that
(1) his original diagnosis was UARS, and
(2), he did not have centrals until he began the CPAP (& ASV) treatment

Any suggestions would be greatly appreciated !

[SenatorBirch]

Hi folks. Wondering if anyone can point me in the right direction here. (see screenshot above)

Thanks

[Sleeprider]

I still see positional apnea, but the logical response to OA and H events is to increase EPAP min. We have seen events evolve from predominately central with AHI over 32 per hour with EPAP 4.0, PS 2.0-10.0; to the current 11.5 events per hour with EPAP min 6.0, PS 4-5, mainly obstructive and hypopnea. None of it makes much sense, and I'm going to suggest, friends (or parents) don't let friend (or family) use Philips devices. This is a recalled device and is not fit to be used. Get a Resmed bilevel or ASV. I think my previous advise to limit PS to minimum 4.0 and maximum 5.0 is incorrect, and a more conventional approach will be to set PS min at 3.0 and PS max at 10.0 using the backup rate to ensure breaths are delivered as needed.

Alternatively, based on your first post, your son may have been better off without therapy. This is a vary high apnea event rate and the treatment being used is not supported by the current diagnosis. I think it's time to go back to the doctor and determine if there is a problem, how severe the problem is, and what the best approach is to treat it. This self-diagnosis and treatment makes me very uncomfortable considering how badly it is going. I would not want to be responsible for subjecting anyone, let alone family to such ineffective and possibly harmful therapy. Any way I look at this, the Philips machine has failed and you should get the more competent and responsive Resmed. If you cannot get it through your health services, consider looking at Supplier #2 or DotMed for a Resmed Aircurve 10 ASV.

[srwilsn3]

Just want to say that my heart goes out to you and your son. Though he is suffering quite a bit, he is fortunate to have you in his corner. Wishing you the best.

If he is not seeing someone currently, I highly recommend a cognitive behavioral therapist. This will not fix his disordered breathing, but there is a mountain of evidence that CBT can improve patients' subjective experience of illness. Just my two cents for a difficult situation.

[SenatorBirch]

Hi. Seeking guidance again for my son. We are running into a lot of obstacles getting help from doctors here, and we really need some progress on this. His condition gets worse by the week.

Briefly, what we want to do is:
1. Reduce/eliminate central apneas
2. Reduce AHI significantly
3. Reduce/eliminate RERAs

First some background:

He was diagnosed with UARS a decade ago.  I'm pretty sure there were few (or no) central apneas, obstructive apneas, or hypopneas. His problem was with RERAs.

In recent years he began having centrals.  Negative CT and EKG ruled out brain or heart causes, so they are most likely treatment emergent centrals. Turning on the backup rate recently seems to be doing its job. The machine kicks in and gives a puff when it detects a central. I believe this is reflected in the "Timed Breaths" in his Flow Rate graph.

(One odd thing worth mentioning, is that even his daytime breathing seems screwed up. He notices himself holding his breath, unconsciously. This happens also when he has the mask on and is trying to fall asleep. He feels like he is holding his breath, and actually feels as if he is losing consciousness - that is, passing out - as opposed to falling asleep. This was not the case prior to CPAP treatment.)

What we would like to do is, in order:

1. Eliminate the centrals. Ideally, we don't want to just respond to and truncate them with the backup rate, but actually prevent them from starting, if possible. We understand it may not be possible to eliminate the centrals, so if we exhaust all options there (or if we DO succeed of course), then we would move on to Step 2.

2. Reduce the AHI. It seems to have increased lately, landing more in the 20's. Previously it was in the teens, and at times well below 10. But no matter what the AHI, his sleep has always been terrible. We believe this is because it has always been the RERAs that affect him the most. After all, the initial diagnosis showed little else but RERAs.

3. Eliminate RERAs. This is our ultimate goal, but we believe we have to do Steps 1 and 2 before we can clearly see what is going on with RERAs. The centrals, obstructives, and hypopneas - while significant - are "noise" that prevent us from tackling RERAs.

So the first question here would be - are there any suggestions for eliminating the centrals?

I should add that the current settings on his machine are not a "best effort" or anything. The one titration he had in a sleep lab seemed to not work at all - the recommended settings actually increased his AHI significantly when he tried it at home. We have not tried a hell of a lot, other than occasional tweaking. So we are wide open for suggestions, and baby steps.

Of course, any other insights or suggestions are welcomed.

I've posted the Oscar event charts as well as a shot of the current settings.

Thank you. 


       

[srwilsn3]

[I posted in wrong thread. So sorry!]