UARS: Questions, contradictions, conflicting advice

[parrotfish2]

I never wanted to be my own doctor. As a newly diagnosed apnea/UARS patient, ideally I would be in the care of a conscientious and well-informed sleep physician, a meticulous sleep lab and an attentive and knowledgeable DME. Since none of the above apply, this leaves me trying figure things out on my own. Besides spending hours on this forum,
I’ve read scores of research papers and discovered that, frustratingly, the best experts do not agree. If I have misinterpreted anything, please excuse the mistakes but I would like some guidance in who to believe? I have some apnea and many more RERAS. Two doctors, well-known in the field, Drs Gold and Guillimart, suggest that UARS patients are best treated with straight CPAP, nasal masks and lower pressures: around 7 or so. When Dr. Gold said this on Dr. Park’s teleseminar, Dr. Park wondered if this took care of events that occurred during REM sleep. Dr. Gold said, I believe, that he didn’t worry too much about REM sleep in titrating the UARS patient.

Does anyone know the rationale for that?

I also have read on this board just the opposite: that UARS patients may need HIGHER pressures to eradicate the respiratory arousals and that it is necessary to seek out a sleep lab that titrates arousals, not just hypopneas and apneas. I’m not sure but I believe that is also Dr. Park’s view.

Which is right?

What type of machine?

I’ve read that patients who have both UARS and apnea, as I do, are best treated with a bi-level machine, with the inspiratory pressure set to treat the RERAs and the expiratory pressure set to catch the apneas and hypopneas. Or maybe it’s the other way around. Of course no on has suggested this to me. I was sent home with a wide open autoset and, having read that this is too wide a pressure range, have been fooling around with the pressures myself. Not recommended, I know, but before anyone chides me please recommend a sleep specialist in New York who can mediate all this. At this moment no one is actively monitoring my results. I’ve been to see Dr. Park, who is a saint as far as I’m concerned, but I need someone who is connected to a NYC sleep lab.

What brand of machine?

The two main brands that I hear about – ResMed and Respironics – have entirely different algorithms. Respironics records RERAS; ResMed doesn’t. I may also have read somewhere that Respironics samples every breath and ResMed only every 3 or 5 or something. Naturally these algorithms are proprietary. Nevertheless, you would think that after years of prescribing machines, especially auto-set machines, to patients with varying degrees of apneas, RERAS and so forth that the sleep doctors might have gleaned some sense of which machines might best treat which profile. As far as I have heard that doesn’t happen. Every doctor has a favorite brand and that’s what they prescribe to everyone.

I was given a ResMed Autoset, which is meant to be a good machine. Still I think I might be better off with a Respironics machine – presumably if their algorithm records RERAS it might also be better programed to treat them. I asked the DME sleep tech that question and he nodded faintly – though he has a Respironics machine himself, so he may just be better disposed to them. And maybe I should have a bi-level. Though I gather I am stuck with what I have for a number of years.

Central apneas

Not a single person who is supposedly supervising my treatment suggested that cpap itself can actually cause central apneas – which I think is what is meant by the “clear airway apneas” on the Sleepyhead data. Even though I am not experiencing refreshing sleep, my AHI is now low – catching the apneas and hypopneas but not RERAS I suspect. But the pie chart shows a preponderance of clear airway apneas. Is this something to be concerned about? Who knows?

I would appreciate any light anyone could shed on the above. I am very grateful for this forum, although I usually feel like a kindergartener who’s stumbled into a graduate seminar. (I’ve downloaded the Sleepyhead data, but what the heck does any of it MEAN?)

[Pugsy]

It would help if we could see what you are seeing on the Sleepyhead reports.
Then you could ask specific questions about what you don't understand and we could give specific answers. The SleepyHead glossary (link in my signature) offers definitions but often we don't know how to correlate the definitions to our reports.
Also...with all your comments above...I didn't see any comment about how you are actually feeling. I assume since you are still searching that you are feeling less than optimal. Please clarify how you feel.

We have to use a host site for posting images here on the forum. I like to use screen shots.
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Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 Home Premium has the snipping tool, Basic may not.
Once the screen shot is created save it in jpg format.
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Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.

[NightMonkey]

As a newly diagnosed apnea/UARS patient, ideally I would be in the care of a conscientious and well-informed sleep physician, a meticulous sleep lab and an attentive and knowledgeable DME. Since none of the above apply,

Not only does it not apply, it does not exist on this planet and will never exist on this planet.

I am very grateful for this forum, although I usually feel like a kindergartener who’s stumbled into a graduate seminar.

I am one of the kindergarteners who is determined to never become an expert. Just KISS and get good therapy - all the rest is purely for amusement.

If I had UARS I would set the machine to pressure range of 10 to 20 cm; read the reports every day to see if apneas and hypopneas are being taken care of and check the pressure and leak lines; and make a subjective judgment about how energetic or sleepy I feel throughout the day. I would also continue to practice excellent sleep hygiene.

I could worry about the pages and pages of stuff I have read or I could let the process work for me.

You have been hit with a lot recently. Keep it simple at this point and see if the therapy makes you feel better. With more energy you can decide later to pursue the finer points or forget them and play golf.

Everyone makes their own choices.

[NightMonkey]

BTW, a CPAP machine can record RERAs?

How does it detect the RE part of RERA? And the A part?

[robysue]

I’ve read scores of research papers and discovered that, frustratingly, the best experts do not agree.

It is actually not that uncommon for experts to disagree when the subject in question is not well understood. As far as UARS goes, it's not been that long since there was controversy over whether it even existed. My understanding is that it is not clear to the experts exactly what the relationship between UARS and OSA actually is: In other words, are they two distinctly different disorders or are they two different faces on the same essential problem?

If I have misinterpreted anything, please excuse the mistakes but I would like some guidance in who to believe? I have some apnea and many more RERAS. Two doctors, well-known in the field, Drs Gold and Guillimart, suggest that UARS patients are best treated with straight CPAP, nasal masks and lower pressures: around 7 or so. When Dr. Gold said this on Dr. Park’s teleseminar, Dr. Park wondered if this took care of events that occurred during REM sleep. Dr. Gold said, I believe, that he didn’t worry too much about REM sleep in titrating the UARS patient.

Does anyone know the rationale for that?

I am speculating here, but my speculations are based on things that I've read.

One problem in the UARS patients is that they seem to be, shall we say, hypersensitive to what's going on in their upper airway: Unlike the stereotypical OSA patient, the UARS patient arouses before the upper airway has collapsed to the point where a hypopnea or apnea can be scored. And the problem is typically arousals not O2 desats. And there is some evidence that xPAP therapy can trigger "spontaneous" arousals in some patients and it may be the case that folks at the UARS end of the spectrum are more likely to experience xPAP-related arousals than folks without UAR-type problems.

So a hypothesis about why a UARS patient might do better at relatively low pressures with straight CPAP would be this: Since the UARS patient's airway is not (usually) fully collapsing, even a small bit of pressure may be enough to smooth out most of the more major flow limitations that are leading to the UARS arousals. But since the UARS patient may be hyperaware of the upper airway, you don't want to add additional unwanted and unnecessary physical stimuli coming from the therapy device itself in the mix. Hence: Straight pressure means the person won't be dealing with "noticing" the changes of pressure in their sleep and arousing. Low pressure may mean the person can skip the need for exhale relief, further reducing the potential for constantly changing pressure levels creating a constantly changing "feeling" in the upper airway, and this may, lead to fewer therapy-induced arousals and better sleep.

I also have read on this board just the opposite: that UARS patients may need HIGHER pressures to eradicate the respiratory arousals and that it is necessary to seek out a sleep lab that titrates arousals, not just hypopneas and apneas. I’m not sure but I believe that is also Dr. Park’s view.

I don't know about Dr. Park's views, but this certainly is Dr. Krakow's view.

Again, my understanding of the hypothesis at work here is this:

As you apply pressure to an upper airway of a patient with sleep disordered breathing, the OAs first turn into hypopneas, and then the hypopneas turn into RERAs and then as the flow limitations disappear completely so do the RERAs. And since a patient with mainly UARS is suffering lots of arousals from the RERAs, it does no good to stop at a point where any OAs and hypopneas the paitent tends to have been turned into RERAs. Hence keep titrating until the flow limitations and RERAs go away. And then the patient stands a chance to get a decent, uninterrupted nights sleep.

Which is right?

No one knows. When experts disagree, that means no one knows for sure. On each side, you have experts basing their opinion on the experiences they have with treating patients. And patients don't uniformly react the same way.

It's quite possible that both camps are partially right and partially wrong. It's also possible that the real answer depends on the particular patient involved. It could be that the part of the puzzle that is not yet well understood is that there's a balance that must be achieved with UARS patients:

Some UARS patients might very well tolerate high pressures and do well if the titration is continued until the flow limitations go away.

But other UARS patients may be so bothered by all that pressure that the CPAP itself then becomes an major issue affecting the quality of the sleep: If you can't sleep well with machine, it's not doing you much good in terms of daytime functioning. In other words, as the pressure is increased, the probability that the UARS patient will have serious adjustment problems goes up. And since the problem in UARS is arousals, if you reach a point where the arousals caused by the machine are more disrupting than the arousals caused by the residual number of flow limitations, then prescribing a high pressure setting to a UARS patient just might be counterproductive.

So, it could be that when consensus finally comes, that the experts may decide that titrating UARS patients needs to focus on finding a sweet spot where the total number of arousals of all types is minimized rather than simply trying eliminate all RERAs.

What type of machine?

I’ve read that patients who have both UARS and apnea, as I do, are best treated with a bi-level machine, with the inspiratory pressure set to treat the RERAs and the expiratory pressure set to catch the apneas and hypopneas. Or maybe it’s the other way around.

I can't really clarify stuff officially since I've got no training in sleep medicine. I can tell you that my System One BiPAP Auto adjusts the IPAP in response to flow limitations, RERAs and hypopneas. It adjusts the EPAP in response to OAs and snoring.

You can read the AASM Titration Guidelines for yourself. The chart that outlines the CPAP titration guidelines for adult patients is on p. 162. The chart for Bi-level titrations for adult patients is on p. 164. The chart seems to indicate that during a titration study, IPAP will be increased for all types of events and EPAP will be increased only for OAs. Neither the IPAP nor the EPAP will be increased for each and every event. Rather: A certain number of events (in a thirty minute period?) have to occur before the pressure will be increased. The number of events needed depends on the type of event.

As to why a person with both UARS and OSA might do better on a bi-level? Again, I can only speculate. In my case, I don't have an official UARS diagnosis. But it's also relevant that under Medicare standards I don't have OSA at all: My Medicare AHI was 3.5; my "Rule 4B---Hypopneas with Arousal RDI" = 23.1, and it was that number that won me my ticket to the grand adventures of using xPAP. Worth noting is the fact that my "spontaneous arousal index" was about twice as high on all three of my titration tests as it was on my diagnostic test.

For me, bi-level was critical in helping me finally adjust to xPAP therapy. In my early and rough going first 3 months of therapy with an S9 AutoSet (running in a range of 4-8 with EPR = 3), I kept running into serious, significant sensory overload problems that fed my growing insomnia monster. In particular, I had really bad aerophagia and a constant annoying tickle in the back of my throat every time the machine started to increase the pressure back up towards the end of my exhale. I constantly felt like the machine was rushing me to inhale sooner than I wanted. And the subjective quality of my sleep ranged from "god-awful" to "horrible". It was the unrelenting aerophagia at low pressures that led the doc and his PA to suggest switching me to the bi-level.

The first bi-level titration came in with pressures of IPAP = 8, EPAP = 6. (Hardly a "typical" bi-level setting). This took the edge off the worst of the sensory overload problems and partially relieved the aerophagia. With hard CBT work on the insomnia, the number of conscious wakes started to drop. The PA remained troubled by my reports of aerophagia-induced awakenings, and I was re-titrated. The new titration set the pressures at IPAP = 7, EPAP= 4. Unfortunately as spring allergies kicked in, the AHI started to climb. So I was switched to my current Auto BiPAP range: Min EPAP = 4, max IPAP = 8, PS = 4, which on my PR System One machine means that my EPAP and IPAP do not have to increase together and effectively, 4 <= EPAP <= 6 and 6<= IPAP <= 8. Long term 90% pressure levels are about 8/5. And the aerophagia is only an occasional problem. And the number of conscious wakes triggered by the therapy are down. And there's good evidence that the number of my spontaneous arousals has also come down.

So getting back to UARS and bi-levels. I believe the idea would be that some UARS patients who cannot tolerate the relatively high pressure needed to eliminate their flow limitations and RERAs might be able to tolerate the needed pressure on inhalation if sufficient exhalation relief is provided---and the "sufficient exhalation relief" may be beyond that provided by the usual exhale relief systems. Moreover, there is a difference in how a bi-level increases the pressure to IPAP and how a CPAP/APAP increases the pressure back at the end of the exhale. And for some UARS patients, this subtle difference may be easier to tolerate.

Of course no on has suggested this to me. I was sent home with a wide open autoset and, having read that this is too wide a pressure range, have been fooling around with the pressures myself. Not recommended, I know, but before anyone chides me please recommend a sleep specialist in New York who can mediate all this. At this moment no one is actively monitoring my results. I’ve been to see Dr. Park, who is a saint as far as I’m concerned, but I need someone who is connected to a NYC sleep lab.

Since you've got no one monitoring your results, let's at least let folks know some useful information about your current therapy with your S9 Autoset:

• What does your 95% pressure level look like?
• Are you using EPR? If so, what's it set at?
• What does your AHI look like? What's the break down between OAs, Hs, and CAs?
• What pressure settings have you tried? And with what results?
• Just how poor is your sleep quality from a subjective point of view? What contributes to the poor sleep quality? And what have you done to try to address non-APAP related issues affecting your sleep?

What brand of machine?

The two main brands that I hear about – ResMed and Respironics – have entirely different algorithms. Respironics records RERAS; ResMed doesn’t. I may also have read somewhere that Respironics samples every breath and ResMed only every 3 or 5 or something. Naturally these algorithms are proprietary. Nevertheless, you would think that after years of prescribing machines, especially auto-set machines, to patients with varying degrees of apneas, RERAS and so forth that the sleep doctors might have gleaned some sense of which machines might best treat which profile. As far as I have heard that doesn’t happen. Every doctor has a favorite brand and that’s what they prescribe to everyone.

Many docs don't even specify the brand, and so the patient gets whatever the DME sells.

But you have hit on a sticky point here: Most docs do NOT know diddly-squat about how these machines actually work. Many docs don't trust APAPs at all. Many docs don't "believe" the recorded data. They treat us based on our response and it's actually a pretty crude filter: We go in and say we're feeling better and the doc assumes that all is well. We go in and we say we're not feeling better, and the doc all too often turns to the usual suspects of "adjustment issues": Usage time, leaks, mouth breathing, and insufficient pressure. And "try harder" as a general bandaid. In other words, the doc may not even look at the data before deciding to bump that pressure up a notch to see if things improve. It's all highly frustrating if you just happen t be a patient who doesn't respond as expected. And my guess is that many of the run-of-the-mill sleep docs are still skeptical of whether RERAs actually matter and whether UARS is something that exists.

And I don't think many of the RTs working at the DMEs know much more about the Auto algorithms than the docs. The information is out there, but it's not clear they really delve into it with any kind of dedication.

I was given a ResMed Autoset, which is meant to be a good machine. Still I think I might be better off with a Respironics machine – presumably if their algorithm records RERAS it might also be better programed to treat them. I asked the DME sleep tech that question and he nodded faintly – though he has a Respironics machine himself, so he may just be better disposed to them. And maybe I should have a bi-level. Though I gather I am stuck with what I have for a number of years.

The AutoSet is a good machine. And I say that as someone who did not find it comfortable to breathe with.

The problem with the auto algorithms is that they are different. But for most people, the differences are not so substantial as to matter that much in terms of either comfort or therapy. To draw a rather broad and far fetched analogy: The question of "Which is better, the Resmed S9 AutoSet or the PR System One Auto?" is very much like the question, "Which tastes better, Coke or Pepsi?" You'll have some folks who are passionately pro or anti one or the other of the two, and a huge, large majority in the middle who legitimately says, "I can't tell enough of a difference to really have a preference."

Yes, the PR System One attempts to score RERAs with a proprietary algorithm. How good is that algorithm? It's anybody's guess. Because the System One is scoring RERAs based only on the characteristics of the wave flow. And in the lab, a RERA requires an EEG arousal. And there's just no way the System One can meet that standard. Still, since RERAs were a big issue on the diagnostic work, having the "RERAs" flagged might provide some comfort or insight into how effective your therapy is if you had the System One machine. And that's not insignificant when you're struggling to make this crazy therapy work. If you really wanted to switch machines, you could start looking for a used System One Auto. Or simply by a brand new PR System One Auto OOP from a place like CPAP.com for $939 with the heated humidifier unit.

As for bi-level? Well, buying a bi-level from a DME (with or without insurance paying for it) requires a different prescription than buying an APAP/CPAP. And it sounds as though that could be an issue for you since you have no doc who is following you.

Of course, there is the grey market: Used machines---from Craigslist perhaps or from folks posting here---are available without a prescription.

Central apneas

Not a single person who is supposedly supervising my treatment suggested that cpap itself can actually cause central apneas – which I think is what is meant by the “clear airway apneas” on the Sleepyhead data. Even though I am not experiencing refreshing sleep, my AHI is now low – catching the apneas and hypopneas but not RERAS I suspect. But the pie chart shows a preponderance of clear airway apneas. Is this something to be concerned about? Who knows?

How many CAs? And when do they occur?

Yes, the CAs as scored are "clear airway apneas" and they may very well be a central apnea. Or not. You see, the thing about CAs is that it's normal to have a few when you are transitioning to/from sleep and the control of your breathing is being switched from the somatic nervous system to the automatic nervous system. But these CAs would not be scored as "central apneas" on a sleep test because they are not part of sleep disordered breathing.

As for the more important problem of "not experiencing refreshing sleep" in spite of a low AHI, we need a bit more information to help you out:

• How long have you been plugging away at CPAP?
• How long do you sleep each night? How often do you wake up? How long are you awake during the middle of the night?
• Are there other things that are disrupting your sleep? Things like pain, drug side effects, allergies, GERD, etc.
• Have you had the usual round of suspects looked at by your PCP? Things like thyroid problems, vitamin D and vitamin B levels, anemia, etc.
• How good is your sleep hygiene?
• How have your sleep habits changed since starting CPAP?
• Do you get some exercise every day?

[robysue]

BTW, a CPAP machine can record RERAs?

How does it detect the RE part of RERA? And the A part?

This is, of course, the big ???? concerning the Philips Respironics System One machine's algorithm that scores what are called RERAs.

The RE part is not that tough: It's scored the same way flow limitations are scored---measure the shape of the inspiratory part of the wave flow looking for flatness vs. roundness in a variety of ways.

The A part? The documentation seems to indicate that a RERA gets scored when there's evidence of a measurable flow limitation followed by a sharp increase in inhalation---i.e. there's something that looks like a "recovery breath" based on a statistical analysis of recovery breaths from a very large number of real RERAs scored on numerous PSGs done on real people.

So---if there's evidence of a flow limitation followed by what looks like a recovery breath, then the System One algorithm is likely to score a RERA instead of a Flow Limitation.

But you are right: Since there are no belts around our chests and stomachs and there's no EEG attached to our heads, we don't know (for sure) whether a machine scored RERA is a real RERA. All we know is that machine scored RERAs are nothing more than places in the wave flow that stand a high probability of being a real RERA based on the statistical analysis of large numbers of wave flows captured in large numbers of PSGs.

And also keep in mind that since there are no belts around our chests and stomachs and there's no EEG attached to our heads and there's no O2 monitior on our finger, machine scored hypopneas, obstructive apneas, and "central" apneas have the same problem: The machine has no idea if we are really asleep when it detects an event; the machine has no way to detect if we've suffered and O2 desat or an arousal in response to a "hypopnea"; and the machine has no real way to detect whether we're making the effort to breathe during a CA, which is why they call them "clear airway apneas" rather than "central apneas" in the documentation.

But we live with the data we can get because some data is better than no data. And the statistical analysis of the wave flow does lead to a decent first approximation of what's going on with our apnea.

[SleepingUgly]

Two doctors, well-known in the field, Drs Gold and Guillimart, suggest that UARS patients are best treated with straight CPAP, nasal masks and lower pressures: around 7 or so.

I've never seen where Dr. Guilleminault has said they are treated with low pressures. Maybe he's said it, but I haven't seen it.

When Dr. Gold said this on Dr. Park’s teleseminar, Dr. Park wondered if this took care of events that occurred during REM sleep. Dr. Gold said, I believe, that he didn’t worry too much about REM sleep in titrating the UARS patient.

Does anyone know the rationale for that?

I didn't catch him saying that. I think he said something about he's not too worried about FLs that occur in REM, but I don't remember him saying he is not concerned about apneas/hypopneas in REM. If he did say that, I can't imagine his rationale for that.

I think it's a problem whenever researchers categorize patients into mild/moderate/severe categories based on overall AHI when there are patients who have highly REM-dependent OSA. Obviously a person who has 15 hypopneas every hour all night is not the same as someone who has 4 every hour of NREM and 58 every hour of REM.

I also have read on this board just the opposite: that UARS patients may need HIGHER pressures to eradicate the respiratory arousals and that it is necessary to seek out a sleep lab that titrates arousals, not just hypopneas and apneas. I’m not sure but I believe that is also Dr. Park’s view.

Which is right?

I agree that arousals are problematic, at least I would have until I read some article recently that said arousals don't correlate with sleepiness!

What brand of machine?

Idiosyncratic choice.

The two main brands that I hear about – ResMed and Respironics – have entirely different algorithms. Respironics records RERAS; ResMed doesn’t.

Respironics reports RERAs as a number whereas Resmed shows flow limitations on a graph.

I was given a ResMed Autoset, which is meant to be a good machine. Still I think I might be better off with a Respironics machine – presumably if their algorithm records RERAS it might also be better programed to treat them.

No, they should both respond to FLs just as well, whether or not they tally them in number form or graph them.

But the pie chart shows a preponderance of clear airway apneas. Is this something to be concerned about? Who knows?

If your AHI is < 5, then your central apneas/clear airway apneas must be less than 5, which is normal.

[jweeks]

I also have read on this board just the opposite: that UARS patients may need HIGHER pressures to eradicate the respiratory arousals and that it is necessary to seek out a sleep lab that titrates arousals, not just hypopneas and apneas. I’m not sure but I believe that is also Dr. Park’s view.

Which is right?

Hi,

I don't know any of the science, but as an engineer and nerd who has UARS, I decided to do some experimenting. I was happy as a duck on BiPAP at 14/20 for several years. Then I started to lose weight, and aerophagia became a major issue. I ran my machine in auto mode for a few nights trying to find a lower pressure that I could live with. The machine never went above 8 or 9 most of the time. That cured the aerophagia, but I felt like a mental zombie. The machine wasn't picking up my events, so it would never adjust up enough to help.

My next experiment was to run at every pressure level between 10 and 20. I found that 15 was as high as I could go without ingesting air, but 16 was as low as I could go and not be a zombie. Even then, I didn't feel good until I was at 18, and didn't feel really sharp unless I was at 20. Clearly, higher pressure levels helped me.

I was left with the catch-22 that at above 15, the aerophagia was so bad that I would get awakened by passing the air out my bottom end. The air swallowing has has reduced significantly since I have continued to lose weight. In fact, I have been in a groove since mid-December where I am getting some really decent sleep, running at 13.5/20.5.

Good luck finding something that works...and I understand how frustrating this can be.

-john-

[tiredintenn]

PF 2, I have UARS and have yet to find an effective treatment. I think PAP therapy can work after a long adjustment period (6 months to a year - for the lucky ones sooner). For me, the higher the pressure the worse I felt. I am thinking about giving PAP another try.