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Need Help. Might have UARS or REM only Sleep apnea
#1
Need Help. Might have UARS or REM only Sleep apnea
       
I have attached pics of my at home sleep study using watchpat one. 

Let me give you my background-
I am 24 years old. For the first 22 years of my life my sleep was excellent and I never felt tired as long as I got enough sleep and avoided alcohol. Then suddenly in August 2020 I started waking up multiple times in a night and started feeling very tired. I eventually figured that I probably have sleep apnea and got a sleep study done. I had an AHI of 15 in my sleep study and my sleep study did not measure RDI. After struggling over two months of trying to use a CPAP ( extremely light sleeper so CPAP fragmented my sleep even more) I got a maxila mandibular advancement surgery done. 6 months later, My AHI dropped to 2.5 but I was still feeling extremely tired. I just figured the tiredness will go away so I waited till now. Then I read that these sleep tests don't test for RDI so last week I got the wabtchpat test done

My overall AHI is less than 5 but my REM AHI is over 13. My RDI is very high. I read in reddit that high RDI means I have UARS and have also heard that UARS may not be treatable. As you can see in the sleep report , my sleep is extremely fragmented. I wake up 5-10 times per night (mainly early morning  when I am dreaming). I am also extremely fatigued to the point that I am unable to even watch TV for more than 5 mins, let alone do any kind of productive work and all of this is with a low overall AHI. I have a few questions

Will CPAP make a visible difference for me?

Will a oral appliance work better than a CPAP in my case?

I have also read in reddit that to cure UARS, I will need a high pressure setting. Will some other PAP machine work better than a CPAP?
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#2
RE: Need Help. Might have UARS or REM only Sleep apnea
Hi there, I will take a stab at this...

To answer your questions (the are my opinions as someone who is actively treating, and has improved greatly, UARs symptoms):

UARS is tricky to treat, but PAP therapy (especially Bi-Level) is often considered the best option to make any progress against it. It is a VERY individual process, though, and lots of trial and error are usually required to get anywhere.

If you do go down the PAP route, you can start with an APAP (ideally the Resmed AirSense 10 or 11) and see how things go (in my opinion, it is a lot easier to "train" on a more basic machine, plus if this works for you, then you just saved the cost of a more expensive one). The AirSense 10 can sort of give you a pseudo bi-level experience, since it offers a pressure differential between inhale/exhale up to three. However it's been my experience that even at a pressure difference of three on both machines, the AirCurve does a better job at smoothing my flow curves and knocking down my flow limitations.

If cost is an issue, these can be found used for pretty reasonable prices (new Airsense 10's can be found for ~ $500 these days). A lot of UARS folks find that they need a bi-level device to really make progress with their therapy. If/when you decide to move up to a bi-level device (e.g. Resmed AirCurve), then you can go the used route as well, but expect to pay ~ 2x what your Airsense cost (for similar condition/hours). Deals can be had if you are patient, though. If you are working through insurance, then the process of moving from machine to machine can be a little harder and it would, of course, be best to discuss all of this with the sleep medicine provider you are working with.

If you decide to go the PAP machine route, then the most important things you can do are put an SD card in your machine to record your data, install Oscar, and get good at reading it. The folks around here are amazing at helping with this last one.

It has been my experience that treating for UARS requires very fine detail, lots of trial and error, and really keying-in to the subjective aspect of therapy (e.g., how do I actually feel?). Case in point, I find that flow limitations over .1 can cause arousals, which causes disturbed/unrestful sleep. Most Apnea patients wouldn't even notice these, I am guessing. I can have a "bad night" with an AHI of 0.3 and 95% Flow Limitations of 0. These would be ridiculously low numbers for someone treating standard obstructive sleep apnea.

Anecdotally, it seems that some UARS folks benefit from higher pressures, especially higher inhale pressures, but that is not universal. Personally, my original sleep apnea CPAP script was for a constant pressure of 8.0. My current pressures are an inhale pressure of 8.6 and an exhale pressure of 13.2 (giving a pressure support, or PS of 4.6).

The benefit of a bi-level machine is that it allows you, as the patient if you choose, to specifically target both inhale pressure and exhale pressure to get the best therapy. In my experience, this is key because there is a lot of correlation between the type of event that I am seeing in my data, and the type of pressure needed to fix it. For example, it has been my experience that snores/obstructive-apneas are best treated with exhale pressure and flow-limitations/hypopneas are best treated with inhale pressures (and, in my case, proper humidity).

But, again, with UARS, the most important thing is how you feel. I can use my machine data as a baseline, but a good part of my education around this stuff is figuring out what portion of the pretty immense data coming out of my machine every night is actually relevant for me.

As far as the dental device goes, apologies, I have no experience with that. If it were me, though, I am not sure I could tolerate wearing something like that all night, but I don't know for sure.

There's lots and lots more to it than this, but that's the beauty of forums like this one. You could get a pretty big head-start on treating your UARS by spending A LOT of time reading various UARS and other treatment threads one you have some machine data of your own to look at and compare.

I hope this helps. It has been my experience that treating UARS is REALLY complicated, but it is possible. The most important thing it takes is a willingness to really dig into your own data/experience and take full responsibility for your own therapy. For me, this has taken a LONG time, but after living 20+ years of being constantly fatigued, daily brain-fog, anhedonia, freezing hands/feet in the winter, even on CPAP, the results have been more than worth it for me.
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#3
RE: Need Help. Might have UARS or REM only Sleep apnea
Hi Jcoleman,

A fellow UARS case trying to treat the condition with an Aircurve 10 here.

Thanks for the extensive reply there. It really reflects my personal experience treating my UARS to an acceptable degree.

I have noticed that you mention reading through other UARS threads. Is the added value there to read on what has helped for others? I have done a fair bit of reading on this board and in terms of actually applying something different, I have a road ahead of me.

Can you briefly highlight what you are looking for in Oscar? My AHI is also fairly often 0, but I do notice a flatting of my flow rate, with disturbances in my breathing at certain intervals, which could be arousals.

Also, you mentioned that the right humidity settings have helped you. I understand that humidity helps reduce the swelling of turbinates, but as it stand I'm winging it at what setting to set the humidity too. Can cranking up the humidity levels on my ASV do any harm?

Thanks!
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#4
RE: Need Help. Might have UARS or REM only Sleep apnea
Hi There @Dutchie

Good questions. SO much of my time spent with this stuff had been trying to figure out what actually matters and what is actually relevant to creating results in my own therapy.

There have been lots of nuggets I have picked up from various users. I would say, overall, that had been really valuable to read through longer threads because then I can get a feel for the trial/error aspect of things (especially when someone has a breakthrough), as well as (especially in the beginning) learning to look for what others were looking for. 

However, so many of these threads just kind of end without any resolution. I wonder if in these cases the people found relief and just forgot to ever follow up with what worked for them, or they just got tired of the constant effort with not enough gain.

So, the hit rate can be a little low, but every now and then there are things that are SUPER helpful. One of them was using the "0" line on the flow rate chart to see the difference between inhale and exhale. Another was hearing about how a decent metric to follow with therapy is the ratio between inhale/exhale (ideally around 1:2, but mine hasn't gotten to more than 1:1.6, but that's a ton better to the  1:.8 ratio I was seeing before).

Through threads I have learned to spot various kind of flow limitations, as well as be aware of the overall roundness of my breaths. 

The most important thing that I have learned lately is the relationship between IPAP and EPAP (especially surrounding PS). I learned that, at least for me, IPAP seems to treat Flow Limitations (FLs) and Hypopneas (I think about FLs being like baby Hypopneas) and EPAP is for treating snores and Obstructive Apneas (OAs) (I think of snores like baby Obstructive Apneas). And, this is the beauty of PS, is that, especially for flow limitations, more IPAP can be applied without having to increase an EPAP that is already knocking out OAs and snoring. 

So, when setting pressure, I try a bunch of ranges over a long-ish period for time, then look at my data to figure out what pressures are needed (what my machine did in "auto") to knock out flow limitations and snores.

From this observation, I've also figured out that my arousal threshold for flow limitations and pressure changes are very low. Case in point, I sleep *WAY* better when I fix my Max IPAP at EPAP+PS. For the longest time I had also noticed that ~ 80%-90% of my recorded events (Centrals, OAs, etc.) were on the downslope of a pressure increase. By adjusting my pressures to the point where I knew they were enough to handle most of the events that were happening, I cut my events down even further (and slept/felt better) by not having any pressure changes. 

I was always a little confused about the conventional wisdom that PS helps flow limitations, in that it seems like this didn't always work for me. I have a much more nuanced understanding of it now, mostly in how PS can be used to boost IPAP to address Flow Limitations without having to go higher EPAP that is already treating OAs and snores (which also keeps leaks at bay).

As far as Oscar data goes, I watch flow limitations, especially spikes over .1 and .2. I count these up and now know that, usually, < 5 over .1 (and 0 > .2) means a good night and more > 10  over .1 (and 3-5 > .2) is probably a night of not very restful sleep. I do use the user flags of 
80% for 8s and 60% for 8s, and I can see how these have a relationship to the overall rattiness/grassiness of my flow rate, but a lot of times these seem positional, and I am not totally sure what I can do about them. My nose routinely plugs up when I lie on my left side, so I assume that's what those are.

I've also learned to watch my respiratory rate. Oddly, at least it seems odd to me, my breathing slows down when I wake up. I can use this to spot times of being awake which gives me an indicator to the quality of sleep that night.

I also watch respiration rate (lower usually means better night of sleep) as well as the 99.5% Flow Limitation number (ideally < .05, often < .02).

I also keep an eye on the obvious things like leaks and snores (admittedly, I don't usually have much of either), but those seem to have a fairly shaky relationship to arousals. Flow Limitations seem to be linked tighter.

With regard to humidity, this is a pretty recent discovery for me. I like in the Northern US and the effects winter has on me are pretty brutal. I had always chalked this up to SAD due to lack of sunlight (which, try as I may, I have not found a decent treatment for yet), but I have recently found that at least some of the effect is due to low humidity (specifically, the effect of low humidity on UARS). 

With the heat in the house blasting away, humidity in the teens is not uncommon in the winter in the house. By giving myself more humidity this time of year (plus running humidifiers in the house), this "winter effect" seems better. 

I am now fairly convinced that a fair amount of my SAD is actually a sleep/UARS issue. However, like a lot of UARS-related things, it is a very tight range. For example, on my Resmed, humidity of 5 (out of 8) and a hose temp of 80 work pretty well. At a humidity setting of 4 my FLs come up, at a setting of 6 my FLs come up even more and I frequently have insomnia and feel like wet garbage the next day. 

My nose is very temperamental (and at the root of my UARS), but taking the time to find a set of settings has been really helpful. I, personally, don't see how humidity could do any harm, it just might be a step backwards if it is either too much or too little.

I know that is a lot, but I hope it was helpful.
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#5
RE: Need Help. Might have UARS or REM only Sleep apnea
That is super helnpful, thank you for putting the time and effort into bundling and sharing what your journey and those nuggest concerning the respiratory rate and inspiration/expiration ratio is very useful! I hope this will help @nikhil222 also on his/her way.

Concerning the effect of humidity on your nasal breathing. Do you use a heated tube along with the humidifier on your machine? I have recently bought such a tube and am quite curious if it'll help my breathing at night. During the day I have quite a stuffy nose and it's leaking pretty much constantly. I'm burning through tissues.

I am aware of the role of Epap to stent the airways open and treat the 'major' breathing events such as apnea's and hypopnea's, but at the same time I have also read that a too low Epap can lead to fragmentated sleep. 

To give you an example, to prevent the PS on my ASV from fluctiating too much I have set the Epap to 8 and fixed the PSmin and max to 4.

https://imgur.com/a/n8sxvk1

For some reason I keep seeing the same pattern in my sleep: fairly good/even breating and seeming out of nothing a big breath, followed by the flow rate becoming smaller and choppy. I am inclined to raise the Ipap even further, even though my gut feeling says that raising the Epap could also help. are these arousals that fragment my sleep? I really wonder what those spikes are..

Overall the insp/exp ration looks fairly ok, as does the AHI and the amount of FL the machine picks up. I think that if I'm able to smooth out those regular spikes, followed by either flow limitation or the odd hypopnea, I've have quite some gains to make in terms of sleep quality. Do you reckon I should gradually increase the Ipap, or also the Epap?

Again,many thanks!
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#6
RE: Need Help. Might have UARS or REM only Sleep apnea
Glad that was helpful. I know these posts I do can get pretty long, but my intent, in addition to answering questions, is to try and create a bit of a cache for people to find later.

As far as the heated tube goes, yes, definitely. I am not sure how much it actually matters for heating up the air (read an interesting post about the physics of heated tubes, that there simply isn't enough heat generated to affect the air that much, and that the temp is just the exterior of the tube itself, not the air coming through it). That is, I use the heat to control for rainout and gurgling of my hose. I also use a hose cover (on a Resmed ClimateLine) and I use a hose-holder arm to keep the center of the hose elevated.

I think your comments about your stuffy nose are interesting. Personally, I feel like I have made the most progress by addressing this. My UARS seems to be pretty much entirely nasal/sinus related (and when I stuff up I tend to mouth breathe and then Snores/OAs pop up), so things that affect these areas REALLY affect my sleep. Humidity has helped quite a lot, but so has eliminating dairy and using some form of nasal flush/rinse as needed. Additionally, it seemed like at least part of my stuffiness was coming from some sort of silent-GERD (or LERD), and boosting my stomach acid (via Betaine), as well as doing the other common anti-GERD stuff, has really helped. This alone probably boosts my measured deep sleep by 20-30%. When I really started to dial this in, I noticed my nose was much clearer during the day, which obviously translates into better nighttime congestion too.

The too low EPAP comment is interesting, I had not heard that, but it makes sense. Lately, I am getting the feeling that PS might be best thought of as a % of IPAP. That is, it is not the fixed value that matters, but the value in proportion to IPAP. So, a PS of 4 with an IPAP of 10 is a bigger variable than a PS of 6 with an IPAP of 18.

In my opinion, for what it's worth, those pressure settings are pretty low, and your machine is really limited from doing much. If it were me, I would try and chase down those flow limitations, especially if they are causing arousals (which they seem they might be). Your leaks look good, and if you have had trouble at higher EPAP pressures, then I would play around with boosting PS a bit. I would want to apply more IPAP to see what it would take to knock those flow limitations down, which could/should address both the spikes in your flow chart as well as the general rattiness/grassiness of it. If you start seeing centrals from higher PS, then if you have trigger setting, then High or Very High might help.

As far as EPAP goes, I cannot see your snore graph, but if you are seeing those, then more EPAP might help as well. If you can tolerate more PS (I would be curious what would happen if your machine could chase those FLs down on it own, but it could be that it would go crazy, especially with those spikes that are near 1.0 and boost you to the moon), then I would go that route first. For my UARS anyway, there does seem to be a helpful range, pressure-wise. Too little and things close up, too much and things close up. Finding the golden middle is, obviously, ideal.

What has really helped me is to try a range of settings, giving things several days to average out before I change it again, to see how I feel at different combinations. It is A LOT of trial and error (I am still tweaking a bit and I have been doing this pretty consistently since about May), but now my changes are much smaller and I tend to live with them longer. 

The most important thing is to correlate how you feel. In my experience, so much of UARS therapy/treatment is subjective. The notes function in Oscar is really handy. Machine data can be VERY misleading, but having a record of how I feel on a daily basis, then being able to use that to correlate back to settings that seem relevant, has made a huge difference.

As far as the spikes themselves, I have no proof of this, but I wonder if these might be some sort of nose-clearing sniffle, like what we do during the day when our nose is running. It would make sense that these would knock down a flow limitation, as well as cause a small pause in breathing. It would also make sense if we did this in our sleep because it is a sort of reflex to a running nose, but this also caused an arousal because of the noise. Just an idea...

For your nose stuffiness, thinking it might be at the root of your flow limitations, I would experiment with both humidity as well as some sort of bedtime sinus remedy. Personally, I use four squirts in each nostril of Neilmed Dry Noses Spray Gel. I've been doing this for a while, and when I was far less treated, this alone would cut my AHI in half. Some folks have good luck with Flonase, and you could even try something like Afrin for a night or too just to see if that is the root of these issues (just don't use it for more than a couple of days, as it is "addictive"). Of course allergies and other common causes of congestion matter here too, if those things tend to affect you.

I hope this is helpful. This stuff is tough to run-down, but it is do-able, especially with the technology/data we have from these machines (as well as the helpful folks on forums such as this).
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#7
RE: Need Help. Might have UARS or REM only Sleep apnea
Thanks a lot for the informatiom. I will start with a CPAP and if that does not work, I will look into a bilevel machine
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#8
RE: Need Help. Might have UARS or REM only Sleep apnea
Thank you very much again for taking the time to post a very detailed reply. I am still very confused on the parts about inhale pressure and exhale pressure. So the EPR in a CPAP reduces your exhale pressure right? So if you have a Cpap pressure setting of 10 ( which I'm assuming is the inhale pressure) and you set EPR to 3 , your exhale pressure is 7. But you say that the ideal ratio is 1:2 and in your case 1:1.6. So that means the exhale pressure must be higher that the inhale pressure. How is this possible in a CPAP as the only thing it can do as far as I can understand is to reduce the exhale pressure so the exhale pressure will always be lower than the inahale pressure right? And also if Inhale pressure is what treats the flow limitations why do you have a lower inhale pressure relative to your exhale pressure?
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#9
RE: Need Help. Might have UARS or REM only Sleep apnea
The "ratio" is the inhalation time in relation to the exhalation time, not the pressures.

- Red
Crimson Nape
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
RE: Need Help. Might have UARS or REM only Sleep apnea
oh I misunderstood it. Thanks. Im still confused on the EPR or pressure support part ( Im assuming they are the same thing). EPR basically reduces exhale pressure so If my CPAP is set to a pressure setting of 10 and my EPR is 3 my exhale pressure will be 7. Am I right about this?
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