PSG Results: Could this be UARS?

[Geer1]

The report says Mallampati of 4 and a hypopharynx grade of 3. He might not of been the most pleasant doctor but seems to have been fairly thorough.

The reason for his diagnosis of UARS is that you don't have OSA but do have airway structures indicative of restricted airways and especially in his eyes (since he didn't have PSG data) unexplained arousals. UARS is often given as a diagnosis by exclusion and in some cases that can be warranted since it is so difficult to accurately diagnose (the only truly accurate way is with esophageal pressure monitoring during PSG which is rarely done).

Your CPAP data has shown enough irregularities to support some SDB, I am still not sure if it is the primary problem and cause of all your arousals during N2. I wish the PSG had been more conclusive but unfortunately it didn't tell us too much.

How hard do you think it would be for you to get another in clinic study? This time requesting them to perform a titration study to see if the arousals appear to be better on current CPAP treatment and then for them to also try bilevel if CPAP doesn't show obvious improvement. They may not be able to determine with 100% certainty if these arousals are RERA's or not but they should be able to see improvement with CPAP/bilevel if they are breathing related.

[slowriter]

How hard do you think it would be for you to get another in clinic study? This time requesting them to perform a titration study to see if the arousals appear to be better on current CPAP treatment and then for them to also try bilevel if CPAP doesn't show obvious improvement. They may not be able to determine with 100% certainty if these arousals are RERA's or not but they should be able to see improvement with CPAP/bilevel if they are breathing related.

This is what I did successfully.

I also made sure to talk with the technician who did the study beforehand to emphasize I was hoping she could prioritize RERAs, and do what she could to confirm I was getting adequate and consolidated REM sleep. I had experience with her from a previous study, so was confident it couldn't hurt.

[deebob]

https://imgur.com/a/3MMLJ50

So last night was another pretty typical night of sleeping decently in the deep sleep stage at the beginning, and then things get bad halfway through the night when I get more into REM.  I was having trouble falling asleep at the 8 pressure, it was feeling kind of like my belly was ballooning full of air on every breath, and I needed to get a decent sleep before working today so I wanted to play it safe and make sure I could fall asleep, so I switched to an auto range of 6-7.4, which was a lot more comfortable but seems like it wasn't very effective. It almost feels like the CPAP is just doing nothing because I'm still waking up very frequently. The higher pressure may have been a bit more effective with breathing issues but it was making it a bit more difficult on my insomnia issues, especially in the middle of the night. Maybe I just need to power through that and get used to it. I took the CPAP off around 630 AM and tried to sleep for another hour or so before getting up so I may have had another couple of awakenings that weren't recorded in the Oscar data.

I will say last night it felt like at least 2 or 3 times that I woke up mid-dream with a feeling of holding my breath....like in the split second between REM and waking up I think I actually observed what felt like a RERA.

I also woke up like 5 times toward the end of the night in intervals of less than an hour, which made my nervous system feel extra on-edge and twitchy. I caught myself jerking or twitching while laying in bed a couple of times...like my nervous system was getting extra stressed out from the frequent RERAs (if that's what it was).

I'm not really sure what I should do about the pressure since so far it doesn't seem like anything has been working. Maybe I just need something more complex like BiLevel or ASV.  I guess I just don't full understand what one of those more advanced machines would bring to the table that would be so much more effective than what the CPAP is currently doing (which seems to be ineffective).

[Geer1]

Ballooning full of air as in too easy to breath (which is caused by EPR and is the reason this treatment works for UARS) or as in air actually getting into belly (aerophagia)? Bilevel and ASV provide more EPR and will make either of these issues worse as the way they provide treatment is by providing larger pressure differences (effectively what EPR is, it is called PS with bilevel and ASV). You also can't trial those machines without a prescription which requires a PSG and doctor on board with diagnosis which is unlikely.

As far as treatment goes any pressure below 7 is going to reduce EPR which is likely counter productive if this is UARS, I would be trying to maintain at least 7 cm pressure. Increasing pressure may or may not help, that is unknown and frankly probably going to remain unknown (took me 2 months to settle on a pressure). If the "ballooning" is due to uncomfort from EPR then you could turn ramp back on and set it to a lower start pressure and the ramp to auto. The lower start pressure will provide less EPR (leave EPR at 3, effective EPR will be start pressure - 4) and then once the machine believes you are asleep it will increase pressure to your treatment level and EPR will increase to 3.

You really only have three options when it comes to trying to diagnose this.

a) Commit to continuing and finishing this CPAP trial to try and see if it has a difference. I honestly don't think that you are going to notice a significant difference by analyzing each night like this and continuing to make changes. I think how you will potentially notice the difference if you commit to a setting, 8 cm set pressure might be the best, and then using it for the duration come hell or high water. The improvement will likely be gradual and you likely won't notice it but at the end of trial when you stop using it then you might notice the difference. After 1.5 months I wanted to give up on CPAP at one point because I didn't feel like it was likely helping that much and I had done some tests and realized that a lot of my home sleep study data was probably inaccurate, after stopping for a few days I realized that it was in fact helping.  

b) Figure out a way to arrange a titration study. If going this way you need to make sure that the perople performing the study are on board to try different machines (specifically bilevel) to target a reduction of both RERA's and spontaneous arousals. This might be hard to do as not all clinics are going to be willing to do so. The way to convince them is by saying you believe you have UARS and that there is significant research available on the subject proving that the only way they can accurately determine if the spontaneous arousals are not RERA's is by monitoring esophageal pressure. If you google uars and esophageal pressure you can find studies to back this up and present them to the doctor/clinic as reason to perform the study as you are proposing (or to use esophageal pressure monitoring if that is an option).

c) You purchase a used Resmed Vauto bilevel machine and keep adjusting settings to see if you can eventually find something that helps. Like your experience with cpap this rarely ever happens overnight in these cases. Unfortunately UARS is a lot more of a pain than OSA.

Personally I would be completing a as you are already committed and possibly requesting b. I would use c as a fall back in case you don't get anywhere with a and b and you still believe breathing to be the issue.

[deebob]

Ok that is all great advice. 

I think I will probably benefit from having a lower minimum pressure at the beginning of the night with ramp on to fall asleep, and then let it ramp to 8. I think I’ll just stick with 8 for now. I go into the sleep clinic to talk to a respiratory therapist next Tuesday (the 2 week mark of the trial) so we’ll see what he says but I’m not confident that he’ll say anything more insightful than what you guys are saying on this forum. He felt good about an auto range of 4-9, and previously said bilevel wouldn’t make a difference for UARS (as did the doctors at the university sleep clinic I went to, who are supposedly some of the best in the city). They are all pretty confident in plain old CPAP and said it probably isn’t SDB if the CPAP does nothing. So I may not get help from them on that point. I can get in line for another PSG with the university, who are aware of RERAs and could look for that, but I also will struggle to fall asleep in that environment again and it will likely be 2 or 3 months before I can get in there.

 I’m tempted to try the home PSG with AXG Sleep Diagnostics who are RERA-friendly, if they will ship to Canada, but they don’t look for limb movement which could also be a factor. But I would at least get a decent analysis for UARS. 

My gut is telling me that there has to be some kind of upper airway resistance at play, given all my physical characteristics, symptoms, and similarities to many others with UARS. I’m sure other issues have developed alongside it but it just doesn’t feel like it’s entirely something else like insomnia or RLS. So if the CPAP fails I may want to just buy a secondhand bilevel or ASV and just give it a try. I don’t really know what else to do. 

I’m also looking into getting a DNA appliance to attempt to widen my palate and improve some of the structural issues that might be causing these problems. There are quite a few mixed reviews about the efficacy of this but there does seem to be a fair bit of positive stories from people who have used it, especially in milder cases. And the lower DNA appliance is also FDA approved as a MAD so that may help as well, since the ENT showed my airway did open up quite a bit when I thrusted my jaw forward. It would be an expensive shot in the dark but I’m getting kind of desperate, and I could do this alongside pap therapy.

[geauxdbl]

I faced a similar set of challenges (terrible anxiety, Mallampti class 3, deviated septum, expiratory pressure intolerance), plus I hated my sleep doctor, so I ended up just buying an Aircurve 10 VAuto for around $700 from Supplier #2

After some trial and error I'm now sleeping better but the real benefit is that my anxiety is vanishing. It's amazing to watch. Highly recommend that you consider the same thing. It wouldn't cost that much more than paying $500 out of pocket to AXG, and it would allow you to skip straight to the treatment phase.

UARS remains a controversial and polarizing subject, so I'm not surprised to hear that you got that response from your doctor. You're going to have to ask yourself whether their opinion has been helpful to you and proceed accordingly.

[slowriter]

I’m tempted to try the home PSG with AXG Sleep Diagnostics who are RERA-friendly, if they will ship to Canada, but they don’t look for limb movement which could also be a factor. But I would at least get a decent analysis for UARS.

I have no experience with this, but it looks in theory promising. You basically need EEG sensors to monitor brainwaves, and chest strap sensor to monitor breathing effort, and it appears this does.

You could get a cheap ~$25 security camera to record your sleep to look for limb movements.

Wait: the AXA site says they do check limb movements.

[Geer1]

AXG would be good for a home study but it should be no different/better than what your PSG already did. That said one thing I believe I/others had already commented on is that they didn't specifically state RERA's. If they didn't bother to score them (which would have been stupid considering you were approaching them about UARS) then that could be part of the issue. If anything I would be asking them why RERA index etc isn't clearly outlined and that you would like clarification if they were actually spontaneous arousals or if some may have been RERA's.

theleftylanky27 youtube channel (owner of AXG) has videos on scoring data, here is one specifically about RERA's and UARS that may be of interest to understand what he and other technicians see and do. I am sure your PSG collected all this data and they should have scored it but might be worth double checking. If it was done privately maybe they charge a bit more for RERA scoring and getting that done would be cheaper than AXG testing?

https://www.youtube.com/watch?v=IFpg0vQx69k

What I have been trying to understand is the cases where flow data and belts aren't enough to indicate RERA's. This is possible according to studies but I don't know how rare it is or the mechanism behind it etc. This is where the esophageal pressure comes into play as it can sense these changes belts and flow data miss.

[slowriter]

My suspicion is the issue is less sensing FL than it is correlating with the arousals and sleep fragmentation. You need people trained to look for this.

[deebob]

It's possible that I could ask the sleep clinic to go back and look at the data to find RERAs. I'm not sure if that's something they would do but it's maybe worth a shot. When I first consulted with them before the PSG, it was in November, and at that time I didnt even know about UARS and didn't even mention it to them. So they weren't exactly looking for that during the PSG, but I mentioned it to them afterwards and asked them to look for it, and then I got the report with no mention of it. So I don't know if it's just something that this particular clinic doesn't look for. They aren't the most reputable sleep clinic, I just went to them as an alternative option because I was told the university sleep clinic could take anywhere from 6 months to a year and I didn't want to wait that long.  The AXG test would probably be a lot more useful because he looks for RERAs, AND I would be able to spend a full night in my own bed. It's probably going to be impossible for anyone to capture an accurate night of sleep for me in a lab setting. Even the PLMs and other symptoms are likely aggravated in this setting and are probably not as reliable.  But like geauxdbl said, maybe it's better for me to just spend my money on a Bilevel machine and just skip the test.  I really feel like there has to be some kind of upper airway resistance going on...there are just too many clues that point to it, especially considering I was experiencing SDB type symptoms like unrefreshing sleep months before I started experiencing the more extreme symptoms of anxiety and restless legs etc. that could be mistaken for something else like insomnia, which are probably a result of dealing with constant fragmented sleep for the past few months.