ac123 Treatment Thoughts/Help

[ac123]

Hi all,

About a week ago I posted a diagnosis thread that went through how I got to CPAP (the sleep studies were very inconclusive, see https://www.apneaboard.com/forums/Thread...nt-options). I've gotten to the point where I'm used to it. I was just about to start changing settings, but a few things happened:

1. I got a new pillow and my leaks went way, way down (far from zero, but much better on average). I was knocking my Evora Full Face mask partly off when I tossed and turned. I'm getting fitted for a new mask tomorrow (probably Resmed F30i but they said there were a few similar ones) with the hose above the head as I also keep getting tangled with the hose. 
2. Last night I got a pulse ox and can see both pulse and SPO2 for the first time. This is recording directly to the machine. 
3. I have a follow-up Dr. Appt next week, I'm totally willing to change settings but would like to talk with them first as my DME gave me a hard time when I picked up the machine saying changing pressures has to come from the Dr. (I know that's not really true, but I'm playing along at least until after my first follow-up or possibly through the end of the compliance period, as they've told me they are watching). 

So that's the good, but here's where I'm struggling. Although my AHI/RDI are pretty good (I've only had 2 nights above 5, both of which were almost all clear airway events that I assume were some treatment emergent events) at 1-2.5. I know that can improve, but I think it's not so bad for the beginning of therapy, and my starting RDI was 6.9 per home study (lab study showed only a little over 1, hence the earlier thread). 

Looking through the first night of data including pulse, I noticed something very interesting.  Although my AHI/RDI were similar to other recent nights, I noticed lots of very large pulse changes (many of 30+ bpm changes) that last maybe 20-40 seconds. Most (not all) are aligned to some odd flow rate data, but most are not marked as OA/CA/H/RE. There are *many* of these unmarked "somethings", like probably at least 10 per hour, some clustered just a few minutes apart. 

Does anyone have any sense of what to make of these unmarked events? One of my primary problems is waking up more times per night than I can remember - are these possibly awakenings? Or are they disordered breathing that the machine isn't picking up or labeling (and thus isn't affecting pressure or going into AHI/RDI calculations)? I'm still absolutely exhausted every day, and feel so far I'm not having much if any improvement, and I am starting to wonder if the low AHI/RDI numbers are incorrect. 

Any thoughts are appreciated! I've attached a graph of the night overall plus two examples of clusters of such events. My plan is to take this with any suggestions to next week's appointment, and hopefully get an official okay to tweak settings myself.

Edit: I forgot to mention, I turned down the sensitivity in OSCAR to pulse changes. The default is a change of 5bpm over 8 seconds, I made it 10bpm over 8 seconds as the default marked more than 250 instances, and am showing you ones that are much higher (25-30bpm).

[staceyburke]

Your numbers and charts look good.  And I understand you not wanting to change anything until you talk to your Dr or supplier.  I will give you some information that you can talk to them about...

Your min is 4.  That is the absolute lowest the machine can go - you are at the bottom number.  You have an EPR (rexhale Pressure Relief) of 3 so it is doing nothing.  How this works is 

Min 4 EPR 3 Exhale pressure 4
Min 5 EPR 3 Exhale pressure 4
Min 6 EPR 3 Exhale pressure 4
Min 7 EPR 3 Exhale pressure 4
Min 8 EPR 3 Exhale pressure 5
and so on.

Exhale Relief is used to control Flow Limits.  FL are apnea just like O and H events.  They are smaller and shorter than the O and H events but can stop you from going into deep sleep and even wake you up.  The machine you have is an excellent CPAP.  The way it trys to stop the larger events (O and H) is to raise pressure when it finds FL.  If you use EPR correctly you will have less FL and less rise in pressure.

[G. Szabo]

I have similar HR changes associated with minor breathing disturbances that were not marked as events. After reading about similar experiences on this forum and publishing my concerns/observations, I concluded that regular HR spikes from the sixties to the eighties-nineties are common and OK. We should be worried if they go above 100.

[SarcasticDave94]

Well, they may or may not allow you to change settings. I myself wasn't given much choice but to take control and do it anyway. This in no way disqualified me from compliance. I legally can adjust CPAP settings, and did so learning what to change and why.

Your therapy isn't tuned well now. You're not getting much out of EPR 3 until your too low pressure min 4 increases. I would change this now and not wait. But it's your therapy and your choice.

My supposed professional DME RT handed me an ASV with what she told me were settings guessed at. Those settings lasted less than 5 minutes when I learned in Apnea Board how to edit them. And I alone have set my pressure because the various doctors I've dealt with had no clue either.

I personally didn't care what the DME or doctor thought about me editing my settings, and my insurance really didn't care except if I used the machine.

Better settings will help you get things going correctly. I would consider choosing sooner than later for getting things closer to right than the wrong they're at now.

[ac123]

All, wow, that was a lot of really quick and useful responses, thank you and thanks in advance for anyone else as well.

My appt is early next week. I know the Dr. well enough to know if I explain I'm watching it and will carefully work on it using a community that has similar experiences and check in with her if/when I have a big problem, she'll be okay with me making changes. Gives me some cover if the DME is spying and gets upset I'm not following the original Rx (it literally says like four places in their materials not to mess with it, they seem to have a massively unrealistic expectation that I can communicate with the Dr. every single time of making a small adjustment).

My first suggestion will be to increase the minimum pressure to 7 to take advantage of the EPR, then go from there. I'll be back on the board after that appt and a few days of adjustment to report back in, hopefully with improvement! Again, this is all brand new to me (a couple of weeks in, but it's taken me that long to conquer the inconvenience issues so I can now focus on the therapy itself) and I look forward to learning enough so I can eventually help others too.

[SarcasticDave94]

A follow-up, not trying to be critical of your decision. I frequently type in a harsh font.

If you're at all concerned the doctor or DME will remotely reset your settings, revoke the implied or actual consent to edit your settings remotely. You're going to know best settings by advice here, including what and why on changes.

[Deborah K.]

It will help folks here help you if you set up your Oscar charts a little differently.  We need to see the following, in the order listed:  Event Flags, Flow Rate, Pressure, Leak Rate, and Flow limits.  Unless someone specifically asks for a close-up of a certain part of your chart, it's more important for us to see the whole night's sleep.  

[ac123]

Wow, so I had my 1st follow-up with the provider yesterday and it went very differently than I thought it would. She looked at my data (she had the Resmed summary that goes to providers already, and she was willing to review some of the OSCAR printouts that I brought with me as well).  She said that when she compared my numbers to the sleep study and we discussed symptoms/effects, that we were most likely *over treating* it and that the APAP protocol was likely the cause of a lot of my apneas since there were a lot of clear/centrals and my sleep studies all had basically none. She also noted the machine is not perfect with differentiating centrals from obstructives and some of my obstructives might actually be centrals (or vice versa).  I was a bit skeptical but of course willing to give it a try. She set the machine to fixed at 4, and said if I have many apneas I can check in with her in a couple of days to a week then we'll go up by 1-2 at a time until we find a pressure that works consistently, and if we get high enough try with EPR on or off to see which is better.  

Basically, an "old school" titration taking place over days/weeks rather than the APAP protocol which didn't seem to be serving me well.

Much to my surprise, my first night fixed at 4 (which I assumed would have at the very least the same number of apneas and whatnot as prior nights, if not more) was actually my lowest RDI since I got the machine (I'm using RDI since I was approved for CPAP by RDI, not by AHI, and that's what we're trying to treat for). The RDI was only 0.57 and I had 1 clear, 2 obstructive, and 1 RERA (average since I've had the machine is 2.65). I've taken out pressure in the screenshots because it's fixed at 4 the whole night.

If you've seen my prior posts, you'll also see that I got the Nonin 3150 and thus have the "official" rapid pulse change and SpO2 drop measurements as well.   Even those metrics are improved nearly 50% compared to prior nights. I've only had that for about two weeks, so not as much data and I know those metrics aren't perfect (software limits). I set pulse mark a change of at least 10 in 8 seconds or less, I'm using this as a very rough approximation for "something" happening (could be minor disordered breathing not enough to be flagged, an awakening of which I have many of every night, etc.) recognizing that some of them are actually "nothing" happening, but it can still be a useful for trend purposes. 

Now, I know it could be a fluke and a future night will be totally different. But, I do have some real confidence that this provider knows what she is doing as her thought seems to be a useful starting point.  So, I think her plan seems reasonable to me, and I'll bring any suggestions you guys have to her (I did suggest the pressure of 7 with EPR and she said we can do that if 4-6 aren't sufficient, but she thinks they will be).

I had a separate post about my diagnostic process, which was super complicated and basically still they aren't totally sure whether I have minor apnea / UARS or not. The plan is to continue for at least a few more months to gather much more data and then make a decision from there. I am still having huge amounts of daytime sleepiness though, unchanged so far in the month I've been using the machine. 

This brings me to my question:

I honestly don't understand one thing about how the machine records data. How does flow limit work and what can we do with that information? Although my leak rates were pretty good (median of 0 for the first time!) I do have a couple of hours with some modest leaks throughout the night, almost all well below the threshold - I'm guessing positional but hard to be certain. Looking at leak and flow limit together, other than when there's a brief spike (like right after midnight I assume I repositioned my mask causing the large leak for a few seconds), throughout the night it seems pretty clear to me that leak rate and flow limit are closely related - when leak goes up , so does flow limit (or vice versa). So, my question is, do we know how to tell whether or not flow limit is real or an artifact of a leak? Can anyone else glean anything from this info (remember, pressure is fixed at 4 for now)? Any insights are appreciated!

[SarcasticDave94]

Fixed at 4 cmH2O! This is for a toddler. If this were me, my CPAP gets set to the therapy settings that's working not some subpar child setting.

I may be inaccurate, but I think this is 2 fold on the doctor's part, maintaining therapy control and setting you up to come in every single time you need a setting change with your credit card in hand. And at straight 4 cmH2O, you'll be needing a pressure edit probably by now. Schedule it and get ready to pay.

Again this sarcastic reply isn't intended to mock you or ridicule. However, this scenario has happened to others before. Please don't fall for it. You can set your own numbers without the doctor paid for set of training wheels. If they don't like you editing settings, too bad, or if you'd like, the phrase "go pound sand" may be applicable.

[ac123]

SarcasticDave - sounds like you're living up to your screenname!

I really do appreciate the concerned response. I actually was thinking this at the time she started to explain it - having to take time off of work, hard time getting appointments, etc. (my insurance is great so it would not have been a big cost to me) and I expressed that concern. She said she books way too far out (2-3 months) to be able to make most adjustments at an in person appointment, I can just message her on the practice portal if I think I need adjustments and explain what and why, and she'll approve them (or tell me why not) that way. She said she sets aside time every day to respond to messages and it's no charge for active, established patients. I only need to come in every 3-6 months until we think I'm on stable treatment and then 1 time per year once I'm stable or as needed beyond that. 

She said the lowest setting was because she's wants to determine if the machine was causing more events than it was stopping at the dynamic pressure. Recognizing it could be a fluke, the first night points towards that being the case (as it was the lowest number of events of any day so far). She's also concerned it might actually primarily be a different type of sleep disorder and trying this will help them figure that out. It might be that CPAP isn't for me, but we don't know yet. I don't sense any malice at all. 

Anyway, do you or anyone else have any thoughts on the relationship between leaks and flow limit?