UARS Advice

tan · Post by **tan** » Sun Jul 24, 2016 10:07 pm

dudemandude wrote:
tan wrote:I had a very similar story with UARS: low AHI, high RDI, honeymoon with APAP, then a "divorce" from it, looking for solutions, including sleep dentist, one count of attempted surgery (changed my mind), but finally found a solution with VPAP and remain "married" to it happily ever every since.

UARS patients natural have a light sleep. Practicing a good sleep hygiene is a good start. Then, you use Sleepy Head to investigate what else may be causing sleep distrubances
Hey Tan could you elaborate on what things you looked at in Sleepyhead to get an understanding of what you could improve in your treatment? I've spent a lot of time lurking these forums learning to understand what I'm looking at and have attempted to find clues as to what I could do by looking at my Sleepyhead results at various pressures to no avail. While my sleep hygiene right now is not very good, I did fix it at various points in my ordeal without any real significant improvements unfortunately. Also how did you eventually settle down on the VPAP solution? Did you ask your doctor to titrate you on it after CPAP failed? Thanks so much for your advice, UARS has proven to be a lot harder to deal with then I had hoped.

I would be looking for these in Sleepyhead:
1waveform, manually, breath by breath, ideally it should be a regular pattern. RERAs make it irregular - to have an idea whether you have UARS

2) flow limitations

3) leaks

Of course, titration is best done in the lab, but good luck having sleep study approved for UARS. My insurance told me to fuck off. On the other hand, titration at home offers familiar environment but it in case of UARS it involves a great deal of trial and error since AHI ain't mean shit and RDI cannot be properly measured.

I resorted to VPAP because I had been influenced by Krakow's articles... Not that they had been particularly helpful. I had been blindly increasing pressures with APAP and felt difficulties on exhale and APAP cannot have EPR over 3. So I decided to waste cash of VPAP from a craigslist ad ($800). I experimented some more: VPAP has trigger/cycle sensitivity configurable (my personal settings are very high, which I found most comfortable) and also settled and 9 exhale, 13 inhale, pressure support 4 and I also tape my mouth and use full face mask and use nasal strips to expand my flimsy nostrils. A lot of variables, as you can see. Not necessarily applicable to your case.

Needless to say, stress, bad sleep hygiene could still my ruin my sleep.

palerider · Post by **palerider** » Sun Jul 24, 2016 10:32 pm

[quote="tan"Of course, titration is best done in the lab,[/quote]

ya know, the longer I read about people getting wrongly set up after lab titrations, the more I wonder about that.

after all, the pressure they come up with there is typically only for a small duration (because they're experimenting) of one night... and anybody that looks at data from machines realizes that sleep varies during the night, and from night to night...

getting a good lab titration has a big element of luck involved. your DIY over a period of time method probably got you much better end results.

tan · Post by **tan** » Sun Jul 24, 2016 10:55 pm

palerider wrote:
ya know, the longer I read about people getting wrongly set up after lab titrations, the more I wonder about that.

after all, the pressure they come up with there is typically only for a small duration (because they're experimenting) of one night... and anybody that looks at data from machines realizes that sleep varies during the night, and from night to night...

getting a good lab titration has a big element of luck involved. your DIY over a period of time method probably got you much better end results.

I would agree that doing a "home self-sleepy study" with SleepyHead and APAP could be more beneficial in case of pure OSA. However, I strongly disagree with you on self-diagnosing and adjusting treatment for UARS purposes. You simply can't measure RDI with APAP

tan · Post by **tan** » Tue Aug 02, 2016 6:26 pm

tan wrote:
palerider wrote:
ya know, the longer I read about people getting wrongly set up after lab titrations, the more I wonder about that.

after all, the pressure they come up with there is typically only for a small duration (because they're experimenting) of one night... and anybody that looks at data from machines realizes that sleep varies during the night, and from night to night...

getting a good lab titration has a big element of luck involved. your DIY over a period of time method probably got you much better end results.
I would agree that doing a "home self-sleepy study" with SleepyHead and APAP could be more beneficial in case of pure OSA. However, I strongly disagree with you on self-diagnosing and adjusting treatment for UARS purposes. You simply can't measure RDI with APAP

I don't know whether I should agree with myself. Do labs have a real-time method of testing for UARS? If they don't, then self-titrating at home is the way to go, *IF* it involves beating those damned flow limitations into the ground.

Except there is this:
http://www.ncbi.nlm.nih.gov/pubmed/25849053
A new approach in the diagnosis of upper airway resistance syndrome (UARS): PAP method.

INTRODUCTION: Upper airway resistance syndrome (UARS) is characterized by repeated number of arousals at night, and excessive daytime sleepiness or somnolence (EDS). It is often missed in classical polysomnographic diagnostic approaches and misdiagnosed as simple snoring or idiopathic hypersomnia, thereby is often left untreated. We propose that positive airway pressure (PAP), which has shown to be effective against UARS, can be used as a diagnostic tool as well. The study designed to test whether patients with high titration pressures can be diagnosed for UARS, and whether this pressure can be used as the treatment pressure in UARS.
...
CONCLUSION:In the light of current findings, during PAP titration patients required high pressures is the evidence of increased upper airway resistance in UARS. Using the from therapy to diagnosis protocol, the PAP protocol determines the individual therapeutic pressures needed by patients

palerider · Post by **palerider** » Wed Aug 03, 2016 1:36 am

tan wrote:I don't know whether I should agree with myself.

let us know how the argument turns out.

tan wrote:Do labs have a real-time method of testing for UARS?

they can stick a pressure sensor in your throat.

dudemandude · Post by **dudemandude** » Wed Aug 03, 2016 2:42 pm

tan wrote:
dudemandude wrote:
tan wrote:I had a very similar story with UARS: low AHI, high RDI, honeymoon with APAP, then a "divorce" from it, looking for solutions, including sleep dentist, one count of attempted surgery (changed my mind), but finally found a solution with VPAP and remain "married" to it happily ever every since.

UARS patients natural have a light sleep. Practicing a good sleep hygiene is a good start. Then, you use Sleepy Head to investigate what else may be causing sleep distrubances
Hey Tan could you elaborate on what things you looked at in Sleepyhead to get an understanding of what you could improve in your treatment? I've spent a lot of time lurking these forums learning to understand what I'm looking at and have attempted to find clues as to what I could do by looking at my Sleepyhead results at various pressures to no avail. While my sleep hygiene right now is not very good, I did fix it at various points in my ordeal without any real significant improvements unfortunately. Also how did you eventually settle down on the VPAP solution? Did you ask your doctor to titrate you on it after CPAP failed? Thanks so much for your advice, UARS has proven to be a lot harder to deal with then I had hoped.
I would be looking for these in Sleepyhead:
1waveform, manually, breath by breath, ideally it should be a regular pattern. RERAs make it irregular - to have an idea whether you have UARS

2) flow limitations

3) leaks

Of course, titration is best done in the lab, but good luck having sleep study approved for UARS. My insurance told me to fuck off. On the other hand, titration at home offers familiar environment but it in case of UARS it involves a great deal of trial and error since AHI ain't mean shit and RDI cannot be properly measured.

I resorted to VPAP because I had been influenced by Krakow's articles... Not that they had been particularly helpful. I had been blindly increasing pressures with APAP and felt difficulties on exhale and APAP cannot have EPR over 3. So I decided to waste cash of VPAP from a craigslist ad ($800). I experimented some more: VPAP has trigger/cycle sensitivity configurable (my personal settings are very high, which I found most comfortable) and also settled and 9 exhale, 13 inhale, pressure support 4 and I also tape my mouth and use full face mask and use nasal strips to expand my flimsy nostrils. A lot of variables, as you can see. Not necessarily applicable to your case.

Needless to say, stress, bad sleep hygiene could still my ruin my sleep.

With regards to eventually coming to your pressure settings did you just go by feeling? What does a good night versus a bad night look like for you? I've been experimenting with pressures and recently found one (10.6) that seems to change the quality of my sleep, improving it just a bit, but I still have a ways to go. In addition, It seems like my waveforms look more regular on average(I'm using the criteria someone posted from the paper describing the various waveforms one sees in a cpap users flow limitation graph) but it's hard to really get a good sense of one nights overall waveform average versus another. I'm also using nasal strips like you are. I've spoken to an ENT who specializes in UARS and he seems to believe that I'm a fairly textbook case and has thus far suggested that I try to optimize nasal breathing and see if that helps me and then possibly consider surgery(I have large tonsils).

Jay Aitchsee · Post by **Jay Aitchsee** » Wed Aug 03, 2016 3:30 pm

So Tan, I take it you believe a RERA would occur only in the presence of Flow Limitation. Or stated another way, Flow Limitation is an indirect measure of Respiratory Effort (the RE in RERA)? Therefore, if Flow Limitations are eliminated (or reduced) so to is the likelihood of a Respiratory Arousal (the RA in RERA)? If this is your thinking, have you quantified the level (from 0.0 to 1.0 in ResMed terms) of limitation you deem to be acceptable. My guess would be 0.2 or less.

Would you agree that one might be able to determine the existence of a RERA at home by these criteria:
1. An abrupt short term change in the Flow Rate wave form
2. An accompanying increase in Pulse Rate
3. No accompanying desat
3. No accompanying apnea
4. An accompanying Flow Limitation greater than X (say 0.2)

If so, then couldn't one potentially eliminate RERA by concentrating on Flow Limitations alone? Monitoring effectiveness by seeing that the Max Flow Rate Level reported in the SleepyHead Daily Statistics remained under X (again, say 0.2) ?

I'm just askin' and I guess it depends on the machine, ResMed or Respironics.

avi123 · Post by **avi123** » Wed Aug 03, 2016 3:49 pm

dudemandude wrote:Hey guys, I'm a tall lanky 22 year old male with suspected UARS. About a year ago, I started getting extremely sleepy throughout the day no matter how much I slept. It'd get so bad that as an intern at the time, I'd sneak off to the bathroom to take naps 20 minute naps which themselves didn't seem to help with the sleepiness. I'd normally get groggy from any kind of sleep, but with this I could fall asleep for 3 hours and wake up feeling like I hadn't slept at all.

Naturally, I went to a sleep doctor and got a sleep study which revealed that while my AHI was around 2.5, I had an average of 37.4 arousals per hour, 21.7 of them respiratory and, according to the report, "elevated upper airway resistance". While my doctor never explicitly mentioned UARS, he did prescribe me a CPAP to use with an auto setting from 4-20.

I went off to college so I wasn't able to see my doctor directly and began to use my CPAP everyday. At first it seemed to be giving me more refreshing sleep(auto seemed to settle at a pressure of around 7) and while I still didn't feel great, I felt much better. Now at least when I did feel bad, I could compensate by drinking coffee or doing something else stimulating. However, after about 2 weeks, my therapy seemed to lose it's effectiveness. I was no longer sleepy throughout the day(in fact now I couldn't sleep in the middle of the day!) but I still felt like my sleep was extremely unrefreshing and was very tired throughout the day no matter what I did, coffee, physical exercise, etc.

I downloaded Sleepyhead and used a lot of the advice found on this forum to attempt to optimize my therapy. At the auto pressures my machine set itself to I'd get on average an AHI of around 3.5. I experimented with pressures from 7-11.5(at this point severe aerophagia set in), auto, straight CPAP etc and was able to get my AHI down to as low as 1 on most nights. However, I found no correlation between my AHI and how I felt.

I've been using the CPAP for about 6 months now and have essentially remained in this state which has made life very difficult. I've returned home and my doctor has scheduled another sleep study(with an explicit titration) to see what's going on. Unfortunately, my doctor doesn't seem to really believe in UARS(unlike the doctors I briefly saw at the UPMC sleep center but couldn't see further do to going home) and is thus unlikeley to be attempting to titrate for it. He seems to be pushing me to get surgery for my tonsils without offering up any real explanation as to why he thinks that would work for my case but CPAP wouldn't.

My question is to those with some experience with UARS who tried CPAP and found it ineffective. Were you able to make CPAP work for you? If so, what did you to facilitate that? If not, did a dental device or surgery help you out? How did you know those were the best options for you?

Thanks so much for your help!

Reply, I don't think that I could help you much with regard to eliminating Flow Limitation (FL). In my case I have noticed that my FL has increased from past years and it is related to my mouth leak/ mouth breathing. When I wear my chinstrap in addition to my nasal mask then the FL is cut by half according to ResScan:

These are my present graphs:

Pugsy posted these comments about it:

" I was going to mention that this latest report is a good example of what happens to flow limitations when large leaks are present.

The flow limitations are well controlled except during the leaks and not just the times over 24 L/min...the flow limitations are even a bit more ugly when the leaks are pushing 24 L/min but not crossing the line.

The increase in flow limitations points to maybe sub par therapy during the leaks by allowing more FLs to occur....may or may not be hugely important though. I guess it would depend on just how important those FLs are and that's a matter for a different discussion. I personally think they matter because the machine manufacturers flag them...so they think FLs matter. If they didn't matter why bother to flag them....just my opinion though."

The Resmed CPAP machine checks if each respiration wave is out of sinusoidal rounded shape and the machine assigns an out- of- shape value to it. These values are shown in the FL graph:

Well, from this FL graph I can tell that the FL was not influenced by the one mouth leak at 2 A.M.:

palerider · Post by **palerider** » Wed Aug 03, 2016 4:23 pm

avi123 wrote:Reply, I don't think that I could help you much with regard to eliminating Flow Limitation (FL)

aaaaand that's where you should have ended your post, or better yet, not even begun.

tan · Post by **tan** » Wed Aug 03, 2016 4:26 pm

Jay Aitchsee wrote:So Tan, I take it you believe a RERA would occur only in the presence of Flow Limitation.

What about snoring and leaking? Even relatively minor can disturb light sleepers, I think. Some say that FL cannot be properly measured with CPAP pumping.

Or stated another way, Flow Limitation is an indirect measure of Respiratory Effort (the RE in RERA)?

kinda. I can't support it with anything but a few anecdotes.

Therefore, if Flow Limitations are eliminated (or reduced) so to is the likelihood of a Respiratory Arousal (the RA in RERA)? If this is your thinking, have you quantified the level (from 0.0 to 1.0 in ResMed terms) of limitation you deem to be acceptable. My guess would be 0.2 or less.

Which of the 4 values are your referring to? Min, Max, Mid, 95%? Anyway, the answer that I have come across is "eliminate them", with a pressure of 57 if needed

I think my mid FL is 0 now and only have very occasional blips on the flow limitation chart. In the beginning of my therapy, I had an APAP 4-20 with a great AHI of 1.0 and below on average (0.0 often times), and ragged FL chart and miserable sleep. I tried to increase pressure and limit min and max, but couldn't tolerate it with EPR <= 3. I ended up having VPAP with PS (EPR) == 4-5, almost non-existent FLs, minimum leaks, no snoring, and a few tricks, which all resulted in a good sleep. What role the elimination of FL has played I can't tell now.

I can try to experiment with decreased pressure to prove (or disprove my point), but I don't have the courage Moreover, it would take at least a week to reliably tell the difference, I suppose.

Would you agree that one might be able to determine the existence of a RERA at home by these criteria:
1. An abrupt short term change in the Flow Rate wave form
2. An accompanying increase in Pulse Rate
3. No accompanying desat
3. No accompanying apnea
4. An accompanying Flow Limitation greater than X (say 0.2)

Can't you have all these during spontaneous arousals, too? FL can be irrelevant (or not). And it's hard to analyze using all these parameters.

If so, then couldn't one potentially eliminate RERA by concentrating on Flow Limitations alone? Monitoring effectiveness by seeing that the Max Flow Rate Level reported in the SleepyHead Daily Statistics remained under X (again, say 0.2) ?

There is no way to tell what one's threshold really is. A few people here reported a good sleep with a lot of FLs.

Also, if UARS is due to high sensitivity of sympathetic nervous system, most beneficial front of attack could be... a proper sleep hygiene, eh? It's simple but not easy.

tan · Post by **tan** » Wed Aug 03, 2016 4:46 pm

dudemandude wrote:With regards to eventually coming to your pressure settings did you just go by feeling?

I have tried to minimize FLs. But how one's feel is the best indicator, of course. Also, the difference in heart rates between when lying in bed and standing is a good one for me. After a bad night sleep, I have difficulties standing erect.

What does a good night versus a bad night look like for you?

Minimum leaks (much lower than "acceptable"), no snoring, no FLs.

I've been experimenting with pressures and recently found one (10.6) that seems to change the quality of my sleep, improving it just a bit, but I still have a ways to go. In addition, It seems like my waveforms look more regular on average(I'm using the criteria someone posted from the paper describing the various waveforms one sees in a cpap users flow limitation graph) but it's hard to really get a good sense of one nights overall waveform average versus another.

Start uploading your SleepyHead screenshots (daily views, no calendar) into imgur and reference them here.

I'm also using nasal strips like you are. I've spoken to an ENT who specializes in UARS and he seems to believe that I'm a fairly textbook case and has thus far suggested that I try to optimize nasal breathing and see if that helps me and then possibly consider surgery(I have large tonsils).

One year ago my ENT told said my tonsils are okay, only rhinoplasty and turbinate reduction is warranted. That same ENT told me 8 years ago that my tonsils had to be removed as well. Go figure, sigh. Anyway, a month before the scheduled surgery I found my solution, so I passed on the surgery.

Jay Aitchsee · Post by **Jay Aitchsee** » Wed Aug 03, 2016 6:05 pm

Thanks for the response, Tan.

My post was kind of a way to summarize what I thought might be your position with my own interpretation.

To answer a couple of your questions: Yes, I think snoring and leaking could certainly be disturbing, but I'm not sure that falls under RERA or UARs which I interpret to mean increased respiratory effort (by the chest muscles/diaphragm) is required to draw an adequate breath.

The value of limitation I was referring to was the maximum value at any one event or the Max for the night. But certainly individual tolerance would have to be accounted for. Your answer of eliminate them all by whatever it takes is what I thought you might say.

Yes, I think those criteria I suggested might also describe a spontaneous arousal not related to RERA.

Anecdotally, here's what I've found:
My greatest reduction in Flow Limitations while using a FFM was by adding a soft cervical collar (but it was uncomfortable and I didn't continue it).
My greatest reduction, overall, has been by switching to a nasal pillow mask (P10 or Dreamwear).
My most efficient and least disturbing way to minimize mouth leaks, CA's, and further reduce FL while using the nasal mask has been by adding a cloth mouth cover. See here: viewtopic.php?f=1&t=112758&st=0&sk=t&sd=a#p1086296

My FL Stats for last night were: Ave=0.03, 95%=0.04, and Max=0.17

palerider · Post by **palerider** » Wed Aug 03, 2016 6:37 pm

tan wrote:Some say that FL cannot be properly measured with CPAP pumping.

some say the earth is flat, and the sun revolves around it.

tan · Post by **tan** » Wed Aug 03, 2016 10:35 pm

palerider wrote:
tan wrote:Some say that FL cannot be properly measured with CPAP pumping.
some say the earth is flat, and the sun revolves around it.

I think Sludge said something to that effect.

palerider · Post by **palerider** » Wed Aug 03, 2016 10:40 pm

tan wrote:
palerider wrote:
tan wrote:Some say that FL cannot be properly measured with CPAP pumping.
some say the earth is flat, and the sun revolves around it.
I think Sludge said something to that effect.

wouldn't have thought him to be a member of the flat earth society.

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