Noobie UARS, pls help me fix my breathing :/

[newuser1002]

Hey all,

TLDR: 22M normal weight (5'8 135) but with a recently fattier neck, with lots of allergies -> enlarged turbinates -> UARS / mild sleep apnea (my best guess). Really bad cognitive symptoms for the past 3 years, songs constantly in my head and very difficult to concentrate, general anhedonia, fatigue, you know the drill. Started using Resmed 10 Autoset for the past few months and have tried multiple settings. Hasn't really improved my symptoms though . Really sick of this sh*t and want to fix it so bad and just be normal again. Any ideas of how to fix my UARS? Specific details below.

Right now, I do a constant 7 with EPR 3, no humidification. Heard that pressure support/EPR helps with UARS, so I do EPR 3. (I've also tried non-PAP interventions that help somewhat: I sleep with an incline pillow, since I often get more obstructive apneas on my side/back. I use mouth tape every night to encourage nose breathing. Antihistamine spray and Nasacort/Flonase and saline rinse also help a lot. Replacing bedding with high quality allergy-proofing, frequently high temperature washing, expensive air filter, vacuum, etc. I've been tracking my symptoms (as objectively as I can) and sleep simultaneously to measure correlations between them using an app called Bearable.)

Problems with my sleep:

• I get 0.5 - 4 AHI on the daily, averaging between 1 and 2.5, generally a mix of OA/CA/Hypopnea. I feel like there's some other weirdness that isn't getting counted as well.
  
• I think my actual breathing patterns look really weird. 
  
• I think my tidal volume looks quite low, though I don't know much about it. 
  

Here's a 5 OSCAR screenshots: https://imgur.com/a/jkNCYuk
Contains a sample good day, sample bad day, and some breathing samples.



Any suggestions on how I should adjust my titration at this point to fix my breathing and lower my AHI/RDI? Unfortunately, I feel about the same as I did before PAP therapy . I would absolutely love your help, please let me know if there's anything else I can provide!

[KeepSmiling]

newuser1002,

Can you post the images using the attachment option of posting.  

Have you done a sleep study and/or seen a sleep doctor?

When I read your statement I thought, concussion/whiplash which may have left other issues.  

[Really bad cognitive symptoms for the past 3 years, songs constantly in my head and very difficult to concentrate, general anhedonia, fatigue, you know the drill.]

[jcoleman]

I'll take a stab here...

I'm curious, how did you land on those pressure settings? With EPR, that's an IPAP/EPAP of 7/4 (the minimum EPAP your machine can do). With UARS, sometimes a little more inhale pressure is needed to clear out the flow limitations (that been my experience anyway, but my flow limitations are almost entirely nasal/sinus related). My original CPAP script was a constant pressure of 8. With APAP, the settings that seemed to treat me the best was auto 14-16, EPR 3.

As far as your breathing goes, I'm no expert here, but that looks like it could be snoring to me, or at the very least, pretty classic inspiratory flow limitation:

http://www.apneaboard.com/wiki/index.php...limitation

If it were me, looking at these charts, I would go to work on that flow limitation to get it down as low as possible. Could be a positional thing, could be a REM-related thing (especially since the bursts of flow limitations are ~ 90 minutes apart). Either way, figuring out what can help get your flow limitations down (personally I aim for a 99.5% of .1 or less, but that's pretty aggressive) I would guess would really help you.

Next I would chase down those leaks. Especially at this low of a pressure, seems like your machine is needing extra pressure to treat your OAs. I would be curious to see what happens if you do APAP settings of 7-20 to see where your machine goes. Sometimes with UARS, too much pressure can be counter-productive (and sometimes too many/much pressure changes can cause arousals), but I might start with more wide-open settings to just see what the machine would do (to get a feel for what it takes to control your flow limitations, snoring, and OAs and hypopneas; at least from your machine's point of view) and go from there. You might also find that a higher minimum pressure heads off these events before they can happen (and gives you better sleep due to the machine not auto-adjusting pressures as often/much).

I thing that I know for sure about UARS is that, at least for me, it is mostly a subjective path to find ideal treatment. Machine data is useful, but more useful is how I feel. I've had many of the same symptoms as you, for a REALLY long time, so over time I have figured out combinations of things that seem to help me. I also still experience a particularly "UARS-y" day from time to time, where my symptoms seems to come rushing back). Feeling better most days, these UARS days are more obvious (e.g. not feeling like this every day has made treating this a lot easier), and I can use them to either adjust my therapy, adjust something else I am doing/not-doing, or just write them off as a crap-sleep night and move on.

[newuser1002]

Thanks so much for the response! To answer your first question, I landed at these pressure settings through the advice of some other helpful folks on this forum.

Now I'm seeing how the flow limitation does seem to happen every 90 minutes... seems like it's REM related. Some other days it's more constant throughout the night, but I think it probably generally gets worse during REM. I don't think it's positional in the samples above, since I slept with an incline pillow (presumably my position doesn't change when I'm on an incline? Though that could be a false assumption). I also believe mine is sinus related, as I have enlarged turbinates and lots of allergies. That was the root cause of when I started getting bad cognitive symptoms 3 years ago. 

I'll try your strategy of 7-20 and seeing from there what pressure range works best for me. 

Here's also my original sleep study and titration study from 6 months ago for your reference: https://imgur.com/a/le88GGq. I'm not sure if they are actually representative of my normal sleep though, for reasons I state in the link. 

Any comments on whether my tidal volume seems normal? Also @Jcoleman, curious to hear your story and describe your symptoms to see if ours are similar?

[jcoleman]

Glad that was helpful. And, also, sorry I missed so many details in your post.

My UARS seems to be pretty REM-related as well. I remember from my original sleep study that the sleep doc told me that he had good news and bad news for me. Good news, my AHI all night was pretty low (8-ish AHI). Bad news, during REM sleep, I had pretty severe apnea. Not that there is a lot I can directly do with this information, but interesting nonetheless. That's one of the things that I have noticed with finally getting to a place where I feel like my therapy is working, I now recall my dreams pretty much every day, sometimes several a night. At first, they were super-vidid, and a bit disturbing. But they have chilled-out over time. Previously, I would recall maybe a dream or two a year.

As far as the sinus piece goes, I've had a lot of luck experimenting with things to help with this. One of the big things I did was quit eating dairy. I also treat symptoms of low stomach acid (I think a fair amount of my UARS was some sort of GERD).

I also do sinus gel (NeilMed) squirts every night before I go to bed, and I'll do nasal irrigation (via a navage) every now and then when I feel congested or am sick. I used to get sinus infections 1x-2x a year but with this regimen I've been able to avoid anything severe for the past several years. Oh, and for the navage I use both the salt packet and an extra Neilmed xylitol/salt packet.

You might experiment with a nighttime decongestant or spray (e.g. Flonase) just to see what happens. There is one doctor that swears by taking Claratin-D right before bed (which is odd, since that has pseudoephedrine in it). I've also used the Xlear nasal spray with pretty good results. Basically speaking, you are just trying to find a specific treatment that works so that you can narrow down where the flow limitations are coming from.

Humidity/temperature can really help with sinus stuff too. This is highly individual, but sometimes a room humidifier can make a world of difference, but too much humidity can be an issue as well. Sometimes just messing around with the humidity/hose-temp settings on your machine can get you so some more relief. I think a lot of UARS people are pretty sensitive to a lot of things, so with any sort of experimentation, I try to only change one thing at a time, change it slowly, and give it a few days to work or not. Sometimes I'll get a false positive/negative on the first night of trying something, and I find I get much better data giving myself some extra time to acclimate to changes.

With regard to the auto pressure settings, that might be a good thing to try, but it might set you backwards. The machine's algorithm is not built for UARS, so it could end up overcorrecting some things which may make things worse. I know someone with nasal/sinus UARS who actually needs to have his pressure capped fairly low (with a higher min) because it seems like too much pressure actually pushes things more closed (causing the machine to run-away more, usually to max pressure for a long period of time). So, you might find that higher pressures, especially higher inhale pressures, might help blast through some of the nasal/sinus congestion you are having, or you might find that too high of pressures make things worse. You may find that pressure changes cause arousals, and a tight pressure range might be rest for you. You'll know by how you feel, and you can also use your Oscar flow data to not only look at the shape of your breathing curve but also see what is happening arousal-wise. Admittedly, I still find arousals pretty hard to spot, but I find that the overall smoothness of the chart means something. The more ratty/ragged it looks, the more likely my sleep was wet garbage.

As far as your sleep study goes, that is a bit over my head, but I do find the lack of desaturations and abundance of RERAs interesting. Sounds like UARS to me. I do think if you can find a way to manage these flow limitations and leaks (which might be making you snore, which might lead to arousals) you will feel a lot better.

You may hit a dead-end with your APAP machine, since there is only so much it can do for UARS. But, for the time-being, good to experiment with as much as you can to see how much relief you can get out of the machine you have. However, your inspiration/expiration time ratio leads me to believe that you **might** need a bi-level to really get relief. Specifically, I aim for an inhale/exhale ratio to be (roughly) 1:2. Your medium is almost 1:1, and your upper values are less than 1:1. I had to go to an AirCurve VAuto to really make progress with this as well as really rounding my flow curves.

As far as my symptoms go, the main ones for me are brain fog and freezing hands and feet. The brain fog presents most obviously in word recall. When I am really foggy I feel like I often use words that are only 80% of what I mean, or I take a while to think of the word I actually mean. Additionally anhedonia was a really big thing for me for a long time. In hindsight, a lot of that feels like sleep deprivation. The main ways I would see that play out would be in an overall "what's the point?" attitude to most things in life as well as a feeling that anything even a little challenging might as well be impossible.

I hope that helps you. Running this stuff down on your own is hard, but it is doable. Try to read as many UARS threads as you can, and then experiment with your own therapy to find what actually works for you. When you hit something useful, you'll know it. Try not to get too frustrated, especially if a lot of this feels like just the effects of an oversensitive system, and just keep trying to make small changes until you experience the improvement you are after.

[newuser1002]

As far as your sleep study goes, that is a bit over my head, but I do find the lack of desaturations and abundance of RERAs interesting. Sounds like UARS to me. I do think if you can find a way to manage these flow limitations and leaks (which might be making you snore, which might lead to arousals) you will feel a lot better.

You may hit a dead-end with your APAP machine, since there is only so much it can do for UARS. But, for the time-being, good to experiment with as much as you can to see how much relief you can get out of the machine you have. However, your inspiration/expiration time ratio leads me to believe that you **might** need a bi-level to really get relief. Specifically, I aim for an inhale/exhale ratio to be (roughly) 1:2. Your medium is almost 1:1, and your upper values are less than 1:1. I had to go to an AirCurve VAuto to really make progress with this as well as really rounding my flow curves.

As far as my symptoms go, the main ones for me are brain fog and freezing hands and feet. The brain fog presents most obviously in word recall. When I am really foggy I feel like I often use words that are only 80% of what I mean, or I take a while to think of the word I actually mean. Additionally anhedonia was a really big thing for me for a long time. In hindsight, a lot of that feels like sleep deprivation. The main ways I would see that play out would be in an overall "what's the point?" attitude to most things in life as well as a feeling that anything even a little challenging might as well be impossible.

I hope that helps you. Running this stuff down on your own is hard, but it is doable. Try to read as many UARS threads as you can, and then experiment with your own therapy to find what actually works for you. When you hit something useful, you'll know it. Try not to get too frustrated, especially if a lot of this feels like just the effects of an oversensitive system, and just keep trying to make small changes until you experience the improvement you are after.

Thanks so much for the response! Do you have a source for why inhale/exhale ratio of 1:2 is good? Also how did you calculate my inhale/exhale ratio? 

Curious, did you ever have constant songs in your head as a symptom? 

Btw, someone else on another thread noted that my y-axis for my breathing samples wasn't on the same scale as the good picture (that was actually a picture I took from your post, haha). Here's a link to that thread, on r/UARSnew: https://www.reddit.com/r/UARSnew/comment...&context=3.

In that case, here's a new link to three new samples of my breathing with the axis of -60 to 60. Is my breathing actually normal then? https://imgur.com/a/XSiGjhU

[jcoleman]

You bet, glad that was helpful.

OK, with the 1:2 inhale/exhale ratio thing, I have **no idea** how much of a thing that is for most people. I stumbled upon the idea in one of the (probably hundreds) of threads I read trying to figure my own stuff out, and thought it was interesting. When I was on APAP, and I first turned on EPR, my ratio went from less than 1:1 to about 1:1.2. And, when I switched to BiPAP it dropped further to about 1:1.6. I've never seen 1:2 myself, but honestly I haven't ventured too deep into higher PS settings, which *seem* like might be part of it. Plus, I am already feeling a lot better so I am not super-motivated to.

As far as how this is calculated, in your Oscar daily summary, look at the Insp. Time vs. the Exp. Time. I use the Med value as sort of the baseline, but also take into account the 95% and 99.5% values. For me these trend towards high higher ratios (e.g. 1:2.5 and 1:3.15, meaning my inhale stays pretty constant and my exhale lengthens out). But, honestly, this isn't metric I watch super-closely. More of an interesting tidbit to be aware of.

As far as songs going through my head, before I was well-treated, you bet. I had the classic delayed-onset insomnia where I would routinely wake up, and I mean WIDE awake, between 1-2AM, then another time around 4:30-5AM; each time taking about an hour to get back to sleep. It was maddening, and during these times I would have all sorts of things rush though my head. Sometimes it was music, sometimes it was events of the day, sometimes it was a set of what felt like inspired, new ideas, like I was at the peak of my creative powers. 

With UARS, in my opinion, this is where things get hard. That is, it is hard to draw the line between anxiety and sleep disturbance via flow limitation and/or arousals. At least for me, these two have been very deeply linked, so it's hard to know which side of the equation to pull on. For my insomnia, better therapy has made a world of difference, but so has making peace with waking up and lying there for a while. Through this, one of the things I have learned is that I often get a good chunk of REM sleep between 6-8AM, so if I can just withstand my 5-6AM wakeup, I can claim some extra REM on the other side. Conversely, if I get frustrated by 6AM and just get up because I am sick of lying there, I cheat myself out of this. I've also found that if I completely avoid sugar and/or lots of starchy carbs at dinner, I can usually avoid the 2AM wakeup and sleep all the way through to the 5-6 AM one.

As far as your flow curves go, yes, the -60 to 60 scale on the chart does make it MUCH easier to read, at least in my opinion. And, this does look like flow limitation to me. Your curves do look nicely rounded, by that washboard in the inhale seems like flow limitation, at least to my amateur eyes.

I think that is good advice in that reddit thread. With flow limitations, it has been my experience that sometimes more pressure than you think you need (e.g. that was on your original CPAP prescription) might be required to clear them. Could be that more pressure support (PS) is needed, which you are sort of stuck with, since your APAP machine will only do 3 max, via EPR).

This stuff is tricky figure out, but I think one of the good things about being a little overly-sensitive (seems to be a common thing among UARS folks) is that relief is self-evident. I know when I hit something that works better for me, because the change feels pretty profound. 

These are my core opinions:

Form what I have read, there is no UARS formula, really, so I've found it is good to just experiment with small changes to see what feels better/worse. Give changes a few days (at least, maybe a week) to work (and for your body to acclimate to them). Don't be afraid of pressure, but also don't pretend like something is better when it is clearly worse. 

Pay attention to how you feel, especially throughout the day. Notice the days where you not only feel better but also sleep longer (and sleep feels "easier"). Use the notes feature in Oscar to log how you feel so that you can associate some qualitative data along with what your machine is showing you. Machine data can be a bit arbitrary, and sometimes the machine's algorithms/scoring can be presenting a false narrative about what is going on. 

I think it is really important to not only take in as much info as you can (on boards such as this one), but also really trust how you feel. Personally, I've gotten to the point where I consistently feel a lot better by making a whole bunch of small tweaks over a fairly long period of time (e.g. ~ 8 months or so). That doesn't mean that it took me 8 months to feel better, I had some pretty sharp increases in there, but to really feel like I had leveled out to a "good, most of the time" place, it took a bit.

[newuser1002]

As far as songs going through my head, before I was well-treated, you bet. I had the classic delayed-onset insomnia where I would routinely wake up, and I mean WIDE awake, between 1-2AM, then another time around 4:30-5AM; each time taking about an hour to get back to sleep. It was maddening, and during these times I would have all sorts of things rush though my head. Sometimes it was music, sometimes it was events of the day, sometimes it was a set of what felt like inspired, new ideas, like I was at the peak of my creative powers. 

This is one thing that makes me doubt if I have UARS or not - I have never ever had insomnia, in fact, I have almost the opposite. Though I don't generally feel tired at night, when I actually try to sleep, I fall asleep essentially instantly. Every night, I fall asleep within 2 minutes. To be fair, I generally don't get enough sleep (probably average 7 hrs a night, for a 22M that exercises). And I've never woken up wide awake in the middle of the night to pee, or any other reason. Sometimes I wake up for a few seconds with a sore throat, presumably from obstructive apneas, though I think that's different than what you're describing.

Is it possible to have UARS without insomnia?

[jcoleman]

I think so, absolutely. I know someone with pretty severe nasal UARS that presents this exact way. In fact, he has symptoms of more classic sleep apnea, meaning that he falls asleep frequently during the day, sometimes when he doesn't mean to, and just constantly seems exhausted. When he goes to bed, he is out immediately, and rarely wakes up in the middle of the night.

The one night/day sleep study was inconclusive for both sleep apnea as well as narcolepsy. However, on follow-up multi-day at home sleep studies, AHI ranged from 5 to 17, and desaturations ranged from less than 10% all the way to 25%+. He is also a healthy, young (slender) male.

At least it's been my observation that UARS does not seem to present any one way, and is not treated any one way. Could be that the issues causing UARS-like symptoms (which probably overlap tremendously with sleep deprivation and/or any kind of chronic sleep disturbance from any reason) have noting to do with what PAP-therapy can treat. Could be that dialing-in PAP therapy can make a world of difference.

My point is, that UARS is a very nuanced, tricky thing to first identify, then try to treat. Why I started going down this road was that the list of typical symptoms fit me like a glove, and I had always felt that even after over 10 years of CPAP/APAP use, I still never felt refreshed in the morning, never felt like I was actually sleeping well. I was fighting fatigue so often, and on some level, just always felt tired/exhausted (even after 9+ hours of sleep with pristine AHI scores). And this is after spending a lot of time optimizing my therapy via Sleepyhead/Oscar to get my AHI down to consistently < 1.

This effort was backed up by finally achieving some success with feeling better, especially after moving to BiPAP. Having days where I would say to myself over and over again, "I cannot believe how much better I feel." Doesn't mean that every day is perfect, in fact yesterday was a particularly strong UARS day for me, and thus sucked pretty hard. But, I definitely have more good days than bad (sleep-wise), and more pretty good days than pretty bad.

What I would say, in my totally unqualified, half-assed internet rando opinion, is if UARS seems to be true for you, try to run it down. You have very powerful tools like Oscar, a machine you can adjust yourself, and forums like this. See if you can apply what seems right to you and see if you feel better. Because, the only way you will know is to try, and the only way to know what/if something works for you is to run it through its paces and see for yourself.

[newuser1002]

Ah I see, thanks for clarifying. Thanks so much for your help, I truly appreciate it! I'll update you with any progress in 1-3 weeks after trying some of the interventions you and others have mentioned .