Noobie UARS, pls help me fix my breathing :/

[jcoleman]

Sounds good, and best of luck.

[newuser1002]

Hey @jcoleman, hope you've been well! Here's an update on my end: http://www.apneaboard.com/forums/Thread-...h-settings

TLDR is I got a Bipap, curious on your opinion about how to titrate.

Other updates - I went from 7-10 EPR 3 to 9-11 EPR 3 but I don't think that did much. Tiny improvement, if any, and my FL is about the same as before from what I can tell. Started using entra strength breathe right strips, which is also a tiiiiny improvement, if any. Moved into a new apartment without carpet in the bedroom, but still pretty congested at night... Though I started washing my bedding with eucalyptus oil to kill dust mites and its been working decently, surprisingly! On rare occasions (maybe correlates to the first day after I wash my bedding?), my 95% drops down to like 0.02 and my 99.5% drops down to 0.1. Went to a new allergist who is recommending Dymista (instead of Azelastine + Nasacort/Flonase) and neilmed saline rinse w/ Budesonide instead of Simply Saline. Overall, a few small improvements, but not much on the grander scale unfortunately. But I'm hopeful that with my Bipap now, I'll see some improvements..

[jcoleman]

Hi there,

I'm definitely not a professional, but I'm happy to share what I have done and what seems to work. Full disclosure, this will might sound quite involved/complicated...

OK, when it comes to pressure settings, this is highly individual, and sensitive, especially with UARS. As such, in my experience, the most important thing to do is use the data from Oscar as a secondary metric on success, using how you actually feel, and how solid your sleep seems, as the primary feedback if your therapy is working. Use the notes feature in Oscar to capture how you feel on given days with given settings. This will REALLY help in dialing things in, e specially over the longer term.

As far as a starting place goes, if it were me, I would try to dial in a tight range and see how things go. I say this, because any sort of auto-adjusting by my machine disturbs my sleep. I think you will find this echoed by other UARS folks.

As far as finding your ideal pressure range, you can look at your Oscar data from your APAP machine to see what pressures (IPAP/EPAP) seem to knock out your core events. That is, what IPAP seems to knock out Hypopneas and what EPAP seems to knock out OAs (Obstructive Apneas). My experience is that FLs (Flow Limitations) seem like baby Hypopneas and Snores seem like baby OAs. Additionally, it has been my experience that IPAP seems to target Hypopneas/FLs more and EPAP seems to target OAs/Snores more.

For example, with an EPR of 3, if it seemed like an IPAP pressure of 10 (so, with EPR 3, an EPAP of 7) knocked out all of your events, then that would be a good place to start. On your Aircurve, that would be settings of Max IPAP of 10, Min EPAP of 7 with a PS of 3.

Again, this will eliminate your machine's ability to increase (and later decrease) pressure as needed. If you find that auto-adjusting of pressure doesn't disturb you, then you can set your Max EPAP a little higher and allow the machine to range on its own (with the ResMed, it will adjust both IPAP/EPAP together, maintaining the difference of your PS between the two). So, let's say you do Min IPAP 7, Max IPAP 11, PS3, your machine will range the IPAP from 10-11 and the EPAP from 7-8.

Dialing in pressure can take a long time, and you may find that slight changes yield big dividends. For example, my current settings are Min EPAP 8.0 Max IPAP 12.4 PS 4.4. Even changing the PS to 4.6 (and Max IPAP to 12.6) creates a very noticeable negative effect. Same goes for PS 4.2 (IPAP 12.2). Very much a goldilocks situation that, at least for me, is VERY sensitive. Also, for the record, it took me over six months of tweaking to land on this, so it's important to be patent, make small changes, let them ride for a few days, and then adjust from there.

One other thing you might want to think about is humidity. Especially for me in the winter (Northern Climate), this was game-changing. I use a humidity setting of 5 on my AirCurve and I keep the bedroom humidity at 50% via a humidifier and hygrometer control. But, that's my nose/sinuses. I also use saline gel nose squirts before bed (this alone I have seen cut my AHI in half).

Again, the important thing is to really key in to how you feel the next day. The things I notice when my therapy is dialed-in:

1. My hands and feet aren't cold all day. I feel much warmer and require less room heat throughout the day.
2. My mind feels clearer/sharper. I don't hunt for words, I don't misread words, etc.
3. I feel more energized. My HRV is higher, and my exercise (running for me) is faster and feels easier.
4. I have more of a positive/proactive attitude. Getting things done feels a lot easier, especially things that I don't want to do, and I make more effort towards the future.
5. I have better appetite control throughout the day. I don't feel hungry in the mornings, and I can easily go 6-7 hours between lunch/dinner.
6. My blood sugar drops. I measure this every morning, just as a useful biometric. I take this as a sign of less stress (it is my hypothesis that high cortisol makes fasting blood sugar higher). This can be highly affected by my dinner the prior night, but it is still a useful thing to watch, for me.
7. I sleep all the way through the night without having to get up to go to the bathroom, that is, ~ 8 hours. Also, when I do wake up, I find that I go back to sleep much more quickly/easily. I don't just lie there, trying to will myself to sleep, for what feels like an hour or more. I can also sleep later.

Once you've landed on a set of settings to try, in Oscar, what I key into (above/beyond events) is:

1. How does my flow limitation look? For me, spikes above .1, and especially above .2, cause disrupted sleep. A good night is < 10 .1's and 0 .2's. I also watch the 99.5% FL. A good night for me is usually between .02 and .06. But, counting the spikes, especially over .2 is more important.
2. How does snoring look? I like to keep these to be just short episodes, maybe 1-3 a night. None is ideal.
3. How does the ratio of my inhales/exhales look? A lot of people shoot for a ratio of 1:2. I've never gotten that high, 1: 1.65 is good for me.
4. How about leaks? My ideal leak rate is zero. This can be a challenge with higher pressures, so something I have to balance. That is, find the minimum effective dose of pressure that yields feeling good the next day and good numbers. I get brief leaks of 3-10 from time to time, that I don't worry about much. If I every see large leaks, I go to work managing those aggressively. Often this means it's time for a new headgear strap and/or mask.
5. What's my respiration rate like? Usually this tracks along with HRV. Sometimes this is totally unrelated to therapy, just more of a general correlate of stress. I find the nights that yield the best day and key into what a good respiratory rate for me looks like.

One last thing, with the BiPap you might find that Centrals start to show up, even if you've never had these before. Personally, I've found the trigger setting of "Very High" to knock these out. I also understand that a PS that is too high can make these worse.

I hope that is enough to get you rolling, and best of luck. With Oscar graphs of your new settings, combined with your subjective analysis of how you feel, can allow both you, and the help from others on this forum, to continue to improve the efficacy of your therapy.

[newuser1002]

As always, thank you so much for your reply. I think your advice has consistently been the most useful that I've seen in all the websites I browse, which is a lot. 

Would you (or anyone else reading) be interested in participating in a daily/weekly/every few days titration update with me? I am thinking about posting of my OSCAR chart of the most recent night(s), along with proposed changes to my titration and would be curious in your thoughts. The frequency can be flexible based on your schedule and based on what makes sense to report. Absolutely no worries if not, I know it's a big ask.

If so, tonight would be day one. Tonight, and probably the next few nights, I plan to just try my current pressure settings for a few days but on my new machine to make sure the data is reported correctly in OSCAR and to have a baseline. That is, 9-11 EPR 3. I.e, in bipap language, 6 min EPAP, 11 max IPAP, 3 PS. 4 humidity. Dreamwear FFM. As for the new Bipap settings, I'm planning on doing 0.3 Ti min, 3.0 Ti max, High trigger, Medium cycle. Unconfident on whether or not those are good starter settings. Based on my inhale/exhale ratio, I thought 3.0 Ti max may be better than 2.0, which was the default.

As an overview, in the next ~2 months, I plan on gradually increasing PS (based on your theory of IPAP reducing FLs, this seems preferable to increasing pressure, i.e the min EPAP. Also would probably be more comfortable / reduce the exhilatory breathing effort). Also plan on trying airfit p10 nasal pillow, mouth tape, Dymista, and a soft cervical collar in the near future. Perhaps buteyko breathing for a few days (though I'm skeptical of its scientific validity, I figure there's no harm in trying). Perhaps a navage instead of neilmed saline rinse. This all being said, optimizing my PAP settings will probably have the highest ROI. Striving to reduce my flow limitations to the ground and feel better!

[jcoleman]

Hi there,

Glad that was helpful, and thank you for your kind words. I *definitely* don't know everything, but my hope is that this level of detail/explanation not only might help you, but any others that follow.

I'd be glad to help with this, with the (obvious) caveat that I am neither a medical professional, nor do I know what will work for you. It's been my experience, especially with UARS (I manage my own plus someone else close to me), that there might be guidelines, but some things that might work for someone might actually need the opposite for someone else. This stuff can get VERY particular, based on the person, and really needs to be worked with, over a longer period of time, to really figure out what will work for you (based on your actual experience of it working, or not).

Case in point, for me, I have found the higher IPAP (tweaked through increasing PS once the EPAP events seem well managed) = lower FLs to be 100% true. However, with the other person, I am currently working through what seems like almost the opposite. That is, I can lower FLs by (slowly) lowering IPAP/EPAP. That is, they seem to have some sort of pressure fatigue that leads to a burst of high FLs, which then leads them to take their mask off in their sleep. I haven't established yet whether IPAP or EPAP is more causative, so I am slowly moving them both, together. This all has to be balanced with keeping events to a minimum, so finding that "goldilocks" pressure/PS setting has taken a while. Specifically, I have found that lowering EPAP/IPAP by ~ .4 (with same PS) leads to ~ an hour of extra sleep before mask removal compared to a baseline. Same going the other way (a loss of ~ 1 hour of sleep by increasing IPAP/EPAP .4, compared to a baseline). This *could* be positional, but the fact that the length of sleep tracks with the pressure leads me to believe there is some value to be gained by continuing to tweak pressure.

Again, with UARS, it is my opinion that the subjective, combined with the basic effectiveness of therapy (not getting overly concerned with any one metric) is key. All of the metrics matter, but the work is figuring out how much.

For your settings, I think that sounds like a good starting point. For your Ti Max, I would look at your Oscar and see if this is an issue. That is, if your inhale time is even getting close to your current Ti max. If not, then the default setting may very well be fine as a result. That is, this setting will not make your inhales longer, it will just accommodate longer inhales when/if they happen (that is, will not prematurely switch to exhale when your inhale is still happening).

With UARS, I think it is a good idea to try a variety of masks too, especially if your resistance is coming from your nasal/sinus areas (nasal/pillow masks can be more effective for this). However, while on nasal/pillows, if events (OAs/Hypopneas/FLs/Snores) are not well-managed by your therapy, you may find yourself mouth-breathing (and thus leaking/snoring more) as a result.

You are looking at this from several different angles, which I think is a good thing, but just know that there are a lot of variables here. In my opinion, it is a REALLY good idea to only adjust one variable at a time, make small changes, and give your test a few days to see how you do. This can be tough, especially if you are feeling particularly garbagey. There is a pretty clear acclimation period that happens with changes, which seem to get longer with bigger changes. In my experience, the body adjusts to the new settings as much as the settings are used to adjust to the body, so basing findings on only one night of new-settings/new-variable can be misleading. Also, there are SO many other variables beyond therapy (allergies, GERD, humidity, congestion, stress, meds, alcohol/cannabis, salt intake, etc. etc.).

Anyhow, glad this has been helpful, and I'm happy to continue trying to help. Best of luck to you.

[BrilliantRoll]

@newuser1002

I am in the process of figuring out what is the cause of my crushing fatigue. I fit the UARS category (low AHI, high arousal index, very little desaturation) but I am still running from doctors to doctors trying to get a miracle cure.
I started using ACPAP for 10 days and completely lost hope when I felt even worse than before ACPAP.
To make a long story short, you're an inspiration. Like you I need to take my health into my own hands and start treating myself.
I am rooting for you and I will be following how things are going for you with your treatment

[newuser1002]

@BrilliantRoll Thanks for the kind words. @jcoleman is the true inspiration - he is the one guiding me and is way further in his journey, fully independently. Glad my journey is helping you though.

[newuser1002]

@jcoleman Thanks again, that all sounds reasonable to me. Here's my day 1 of Bipap.

5 min EPAP - 11 max IPAP, 3 PS. 
4 humidity
3.0 Ti max, 0.3 Ti min, High Trigger, Med Cycle

Here's the first night. Despite having the same pressure settings as before my bipap, it seems my FL is already a tiny bit better than usual (95, 99.5 = 0.02, 0.10) rather than usually it's more like 95, 99.5 = 0.4, 0.20. Though it seems like the algorithm isn't picking up some flow limitation (see screenshot below). Maybe the Aircurve algorithm is just better for me compared to the autoset. Or maybe the Ti max / Ti min / trigger changes are better? Not sure how to tell. Feel about the same, I think.

One other note in particular, my insp/exp times are completely different now. Previously my insp > exp, now it's way the other way around! More details in the screenshots. Not sure how to interpret this. I read something about the cardioballistic effect, but I'm not sure if that's in play here.

Since my pressure isn't even hitting the max of the range during some undetected flow limitation, perhaps I should raise my min EPAP? Any other comments?

Here's some OSCAR screenshots: https://imgur.com/a/AIRXz8V

[newuser1002]

6 min EPAP - 11 max IPAP, 3 PS.
4 humidity
3.0 Ti max, 0.3 Ti min, High Trigger, Med Cycle

Bedtime Nasal congestion level: Slightly above average (i.e for me, one nostril essentially fully blocked, other nostril half blocked.) Note: I'll also rate this every day, since I've found over the last few months that my nasal congestion and flow limitation and subjective feeling the next day are all strongly correlated: more congestion -> bad. I want to track this to make sure we don't confound my pressure settings from this variable.

Hours of sleep: 6 (unfortunately..) Same rationale as above.

Results: 95%, 99.5% FL = 0.00, 0.17.


That 0.00 number is great! However, I manually scanned the OSCAR flow rate graph and found many undetected flow limited events. Essentially my entire REM is flow limited, unfortunately. Seems like a misleading flag. Not sure how it compares to previous days, will need to do a more through exploration.

Subjective Experience: A bit more tired than usual, but I think it's mainly caused by my hours of sleep though + slightly above average nasal congestion combo. I never feel good on 6 hours. But my REM sleep was truly quite bad today - I'm keeping an eye on the possibility that the min pressure raise may have somehow worsened it.


OSCAR screenshots: https://imgur.com/a/DCw0aH2


A note on my apple watch sleep stage data - I've found this to be pretty accurate in terms of general sleep architecture (i.e which stage I'm in at any given timestamp). However, the amount of arousals it measures is way undercounting, and the amount in which it undercounts seems to vary between days. So I mainly use it as a guideline to see when my REM is for ease of access to scan OSCAR for those timestamps. Also, the total amount of REM correlates decently well with my subjective experience the next day. Today was quite low for me, but I suspect I would have had way more if I slept more... One more thing, ignore the "Time in Bed" - that's totally off since it just starts automatically at 10:30 pm regardless.

Tonight, I'm thinking about raising my PS (and max IPAP) by 0.6. I'm thinking about raising it in roughly that increment to start, and then lower as I go on. Since I feel like I'm far from my optimal at this point, I can afford to raise this much without going over my optimal threshold, I think.

One question - How do I get my machine to be more sensitive to my flow limitation and raise pressure faster? Really a shame that it just sits there below the max of the range (in fact, near the minimum..), while I experience flow limitation...

Any comments / observations from your end? Thanks!

[Sleeprider]

Your flow limitation is nearly nonexistent, but the machine is raising pressure very quickly every time it is detected. I actually think you need to increase EPAP min higher to address the OS and some flow limitation. I think you may need EPAP min at 7.0. You may want to delay increasing the PS until you have tried this. You can increase IPAP max pressure to 15 or higher as the machine will only go as high as needed to address the events. Feel free to give it some room.