UARS/FL (PLMS): Yellow/R Lights For So Many Lingering Folks_“Is Bilevel the Answer?"

[mper6794]

Hi, Folks

First, apologies in advance for my non-native poor English. You know, distinct culture and poor written communication may eventually sound weird, offensive, or even insults, rather than an innocent joke or statement.

In the title of this thread is inserted the question by Dr. Barry Krakow, whose link to is mentioned almost everyday week or so in this Forum. My response, in advance: Yes, Bilevel would be the Answer !

Yet already a six-month while and learnings in this Forum, this is going to be my first thread. It may happen I would have something to call attention to.

The universe here is going to be so many cases of lingering people (in my interpretation, and from others, are bearing UARS and/or PLMS ones) starting to be treated with APAP and ending up disappointed very soon, in general trapped between aerophagia and insufficient EPR:3.0. In some cases people start treatment by tackled mild obstructive apneas, remaining with the UARS/FL (and, eventually, PLMS, sometimes a kind of taboo in this Forum ). Mild apneas were just the tip of the iceberg !

Only recently I could mention some 16/20 cases that have come to the Forum, quite often with titles, bearing words that reflect the situation:..low AHI still tired….UARS…flow limitation….lingering….trying….not feeling good….ASV…, and so on. Maybe in less than some 30-40% of these cases, folks already moved from AUTOSET to BPAP and experienced what I have been calling the “the 1cm-pressure increasing magic”, while changing from EPR to PS:4.0.

Elsewhere, I think Sleeprider, also have realized on this lingering AUTOSET-to-BPAP members.

I used to be an UARS sufferer, totally controlled nowadays, I think. It remains its companion RLS/PLMS, which I still struggling to get it tamed satisfactorily (see details of my case on following posts here).

Since a joined the Forum, I am focused on these two conditions, either scrutinizing it or posting. Then, what I am about to say may bring some bias toward these my two sleep drawbacks.

You guys might know how serious are UARS and PLMS: to have a preliminary sense, I would suggest you taking a look at what, separately, Drs. Guilleminaut, Steven Park (ENT), and Barry Krakow have been elaborating on those, since a long while ago.

I, myself, used to be a UARS sufferer for some decades; nowadays, completely worked out with the BPAP (EPAPmin: 7.2, PS: 4.6/5.6). Together with RLS/PLMs, the couple only luckily, by chance, didn’t kill me along the way: chronic “insomnia”, nocturia, tens of awakenings (some with suffocations) at night, daily nightmares, no memory left, anxiety, panic attacks, daily tiredness, and much more.

Quite often, while seeing such lingering people’s cases, I am afraid I have not understood why there would be great, kind of reluctance, reserve, on recommendations to move from AUTOSET to Bilevel machines, even from ASV back to Bilevel ? Would it be due compliances, healpth insurance, DME, and such?

Also, I am very respectfully on Dr. Barry Krakow’s statements, such this one “ In our prescriptions for bilevel, I would venture that the average gap is in the 5 to 6 range with tremendous variation, including some with a gap of only 2 or 3. Those with a lower gap requirement would likely do as well on FLEX or APAP, but to repeat, the large majority of our patients have a gap of 4 or greater.”  Why have we not seeing such cases (i.e. PS > 4.0) here in the Forum ? You might know, Dr. Barry Krakow, himself a UARS, as far as I know, would have a huge experience on UARS/BPAP, as he has been dealing with thousands of cases.

I am afraid, depending on how discussions evolve in this thread, I would not be able to lead everything, so that, hope and invite maximized contributions from you guys, please.

many thanks, Good luck

[slowriter]

Nice to finally see your thread!

On this:

Quite often, while seeing such lingering people’s cases, I am afraid I have not understood why there would be great, kind of reluctance, reserve, on recommendations to move from AUTOSET to Bilevel machines, even from ASV back to Bilevel ? Would it be due compliances, healpth insurance, DME, and such?

In the US at least, I think it's insurance.

[sheepless]

mper, it's great that you are shining a light on uars, plm & bilevel. I agree these and a host of non apnea/cpap factors like plm contribute to lingering fatigue and quitting treatment. I hope this topic continues to be fleshed out. the time seems right as more people are presenting some of these issues lately.

[mper6794]

..Hope, so sheepless. By the way, as I have a rather good idea of your case (UARS/FL and PLMS), could you tell us, under your current vision,  why you are on ASV, rather than BPAP?
That's because, it is still my curiosity to imagine how a UARS/PLMS sufferer, who most than often, awaken a lot, move a lot, therefore creating false events all the time, can stand PS and pressure varying all night through adding still more instability on sleep.
good luck

[sheepless]

my first diagnosis in 1987 was central apnea with no treatment available.  older and heavier, in late 2016 I tested with 48% ca to 52% oa.  doc prescribed apap.  18 or 19 months of that produced overall ahi of 5-6 but continued to feel bad.  I saw plenty of flagged and unflagged flow limitations.  late in that period I started to vaguely recognize plm as a significant issue.  

however, with ca being a large presence I sought out the asv as the only machine designed to address them.  wasn't really tuned in to uars or plm yet (plus I'm not convinced my flow limitations not associated with plm rise to the level of uars).  great success in reducing ahi - latest 31 day setting yielding ahi of 0.20.  recently ripinirol has greatly reduced the respiratory response I associate with plm in  the flow rate.  initially longer sessions but plm and fragmentation creeping back up again.  might need some dosage adjustment or alternative med.

otherwise, maybe just never had the opportunity to try bilevel.  of course the asv is bilevel but different than the vauto in the resmed line so as I read more about uars I kind of assumed being able to adjust min ps would accomplish same as vauto ps.  as it happens, I seem to fare worse with min ps above 3.6cmw.  on the other hand, reducing plm has dramatically reduced my flow limitations and the swinging ps that rises in response to flow limitations triggered by plm.   I'm also of the opinion (an assumption without empirical evidence) that no cpap modality can compensate for plm triggered flow limitations inasmuch as the physicality of plm is more forceful than the relatively passively relaxed and slouching airway common in the absence of plm.   

I've attached a screenshot from last night that is a good example a plm caused awakening.  plm in the flow rate isn't quite as distinctive as without the ripinirol and the episodes are much less frequent and much shorter in duration with the medicine.  still, the relatively periodic inhale 'spikes' are easy to see.

[sheepless]

"...how a UARS/PLMS sufferer, who most than often, awaken a lot, move a lot, therefore creating false events all the time, can stand PS and pressure varying all night through adding still more instability on sleep."

I have far too many arousals but I don't have many false flags. with 0.2 ahi I don't get many events in the first place. also, I've learned to breathe through awakenings and roll overs. plus, I turn the machine off if I'm lying awake for more than a minute or so.

re the ps swings: yes they are significant but so short that I am not conscious of the rise and fall. in addition, I keep my max ps relatively low (ish), hoping it is enough to catch ca (which by all appearances it is doing quite well) while minimizing aerophagia and sleep disturbances from really high pressure. with apap I was all too frequently aware of high runaway pressure, stopped only by turning the machine off. after the first week of asv, I have not observed many if any awakenings associated with pressure.

[mper6794]

sheepless pid='314759' dateline='1570731490'] ..." so as I read more about uars I kind of assumed being able to adjust min ps would accomplish same as vauto ps"...sorry, I know very little on ASV, so, in conclusion, ASV could work as a VAUTO, by adjusting PS and EPAP? 

..."on the other hand, reducing plm has dramatically reduced my flow limitations ...this is  very interesting. Medical literature, as per Barry Krakow'a book, based on many cases, indeed, suggest this may happen. For me, on the contrary, at least meds like Pregabalin 75 and Pramipexol 125, both increased U/RERA-FL (maybe due to non desired sedating effects) (see attached, a simplified graph, from a much more weird thing, of my 7-month on OSCAR: I HAVE DECIDED START PIGGYBACKING MY CASE, GRADUALLY, AS THIS THREAD EVOLVES; HOPE IT WILL WORK. I JUST WOULD NOT LIKE TO CREATE ANOTHER THREAD).

_ “I've attached a screenshot from last night that is a good example a plm caused awakening”…yes, indeed, it appears the case. Very rarely, I have something similar to yours.

Goodk luck

[slowriter]

How about some screenshots? I'm curious what you two see in, say the flow rate or tidal volume for the entire night view, in your own data.

[sheepless]

I know little of the vauto so we're not much help to each other on the similarities to and differences from asv. maybe the more-experienced members and/or folks that have used or are otherwise familiar with asv and bilevel can explain / compare whether and how each of these machines can be used to fight flow limitations. I believe it's the same in both machines: with min ps, but I don't know how algorithms differ.

[mper6794]

Goodk luck