[Pressure] Newbee - 1st Evening Failure

[Sleeprider]

If that is "real", I would want you on a device that is capable of providing sustained pressure support without relying on spontaneous effort. I don't often go for ST, but that kind of bilevel can provide a fixed pressure support adequate to support inspiration and hold the pressure support long enough for the breath to be completed (TiMin). My best guess of the timing of this respiration is in the image below where I have marked what I think is the start of inspiration with a green hash and the start of expiration with a black hash.  What seems to be happening is that either this machine is improperly recording respiratory flow, or respiration is very disrupted and needs pressure support to normalize.  The answer is going to require a discussion with the sleep doctor and a titration study specifically designed to evaluate this pattern.  Before doing that, I would really like to see if this pattern is the same on a different machine of the same make, model and settings (a loaner).  Respiration is occurring in normal 4-second cycles at about 16 BPM, but flow is bimodal in inspiration. This is a variation of the Class 2 and Class 3 Flow Limitations in the post #156 by Multicast.  If that is true, then pressure support with a minimum time of inspiration of 1.2 seconds should resolve it.
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[SarcasticDave94]

With what info Sleeprider is stating, I would be looking for a machine probably with two items, Timing controls and backup rate, as he's signified basically same. My take in the ResMed line is that ST as the starting point, followed by ones above that is ST-A, Stellar what I call PAP/NIV hybrid and then the big guy Astral, same as I'm fighting like mad to get. I suggest your best bet on acquisition and success is the first 2, the dumber more simple ST and I call it the smart version the ST-A. Maybe on a Stellar, but the price has just increased a lot by virtue of this choice. Ditto multiple times more on the Astral. Your healthcare and insurances are different than here, even so all ducks need to be in a row, the more the higher you progress in these 4 machines. Maybe I missed something, doesn't seem so but there's my take, based on Sleeprider's assessment above.

[Snooks]

This is turning into a nightmare. The anxiety alone is going to kill me

I will try and contact the Resp Specialist tomorrow but at this time of the year, that could be almost impossible.

With regard to a whole new machine, at this stage "not a cat in hells chance". I am on a disabled pension, we have no private insurance and $4000 + is out of the question. So I guess we need to get this Dr Quack onside and see what happens and gain support from him, for help with building a case to justify Govt funding.

I will keep the thread updated as soon as I have any news and thanks again to everyone for their comments and advice.

[Sleeprider]

Tony, this isn't fair to you. First, as far as I know, you don't feel bad with your existing therapy. Please relax. While we sit here and say we're unsure if it's real, I understand that hearing that from people you believe have some expertise, can be very stressful. The best guide to therapy is how you feel. I drew up that graph to prove what I was saying earlier is accurate, that your respiration rate is in fact 16 BPM which is normal. Your tidal volume, minute vent are all NORMAL. What is abnormal is the graph we are seeing. Please don't confuse that with your health! This will work itself out, and the first step I suggested was to simply get a loaner machine for one night so you can compare the results. If the results are the same, we go from there. This is not an emergency. You took care of your heart A-fib and your doctors are satisfied things are fine. As far as I know you FEEL fine. Please don't take our speculation as anything to be anxious about. We are problem solvers that are seeing something we don't fully understand at this point. We sometimes forget our bedside manner and especially our own advise, which is to not focus on the data, pay attention to how you feel.

[Snooks]

Tony, this isn't fair to you.  First, as far as I know, you don't feel bad with your existing therapy. Please relax. While we sit here and say we're unsure if it's real, I understand that hearing that from people you believe have some expertise, can be very stressful.  The best guide to therapy is how you feel.  I drew up that graph to prove what I was saying earlier is accurate, that your respiration rate is in fact 16 BPM which is normal. Your tidal volume, minute vent are all NORMAL.  What is abnormal is the graph we are seeing.  Please don't confuse that with your health!  This will work itself out, and the first step I suggested was to simply get a loaner machine for one night so you can compare the results.  If the results are the same, we go from there.  This is not an emergency. You took care of your heart A-fib and your doctors are satisfied things are fine. As far as I know you FEEL fine. Please don't take our speculation as anything to be anxious about.  We are problem solvers that are seeing something we don't fully understand at this point. We sometimes forget our bedside manner and especially our own advise, which is to not focus on the data, pay attention to how you feel.

No problems in that regard Sleeprider, I understand what is happening.

Just a whole host of things and the CPAP stuff to boot. Now we are in lockdown again for C19 and i'm like a stone throw away from one of the main locations.

Just 2020 has been a crappy year on the whole. I'm keen to sort out the issue and looking at what options are available and trying to sort something out. If I had a Resp Specialist I had any confidence in it would be way better but at the moment changing is impossible, due to Christmas, making appointments etc.

All good mate but I do appreciate your post. I'll chill soon

[SarcasticDave94]

If I may add what I'm hoping passes well as wisdom more than folly.

While it MIGHT be needed for treatment of the graph blips or whatever, if you're not feeling ill effects, decide if it's really worth the fight to correct. I know we're not dealing with cancer for example, for some the cure for the cancer kills when the cancer might have not done so. In other words, have a long and serious conversation with self, yes that's acceptable, or your companion and even children IF it's a serious matter.

Sit down and with a clear head emptied of all OSCAR data. Now think long and hard on the issue you're concerned over that the data brought to your attention or however they occurred. Now that you're thinking, consider the fear I'm hearing, but do not count how to pay for or to get doc to script or testing. No nothing else on the table than "Is this thing worth the effort or battle to fix?" State for yourself if the fight is required. Ask the yes/no question "Does it hinder sleep/rest, cause discomfort, or pain?" Not for us but yourself, answer what it affects, again all data on this no longer counts period. No if, but, or anything. Disregarded the data? Now tell yourself how it makes life worse. If in fact you come up with nothing, maybe there's not a battle to fight. Again maybe.

For YOURSELF ONLY, your own peace of mind and sanity, yes really, maybe only do this... talk with doc whoever, you this out seriously and completely. If you'd like to post that conversation here if this helps you get through.THEN decide if you'll take that doc's advisement.

Let you and doc discover the "it", this problem or whatever you call it. Then decide if you've got confidence to go doc's way or not. Your choice only here.

Now decision time comes. You've thought, discussed, consulted, maybe tested. Grade your thing, is it worth fighting? Some things yes OK fight with all you've got, but be determined that once you start that fight, you don't get to quit at all, it's win or defeat situation IMO in this regard, if it's serious enough to fight to get or address, it's also necessary to see it through to a win or the effort's wasted.

Final time, is your battle your choice. Make an honest effort to define whether to fight or leave it. And when either way, make up your mind your decision is "right" and worthy your time, effort, stress, energy, and all your mind and heart just be in to win... or to let it alone and a determination not even look at those blips again and set through mind to where you're at now. Whichever action you take on, be sure it's the one you'll not regret taking on.

Go and think, and my sincere desire this helps. Best wishes you succeed on fighting or leaving it alone.

PS you can ask how I came up with this if you're of a curious type, but I'll spill it freely. I've done that regarding my ASV therapy wheels had fallen off, leaving medical people not doctors state I need a NIV/ventilator to combat COPD and complex apnea combo. Mine had robbed most night's sleep rest and I'm worse for not being therapy of some flavor. I opted to fight as the other option isn't acceptable to me.

PPS don't feel that to not fight as easier, both choices are hard, choose the BEST for you.

[multicast]

First of all, don't be anxious: All's well that ends will, and so shall it be.

Please adjust the flow rate diagram as follows: set the range of the flow range from -80 to +80 (Right click on the diagramm title -> y-axis -> override (or the like, I have the German version running) -> Min to -80, Max to 80).  Furthermore check the button "dotted lines -> zero".

Your flow rate appears strange, but don't worry, it just appears strange.  Remember that no one can see the raw data of the flow rate (different to Respironics machines).  All of the raw data are already preprocessed by the machine in some way, unknown to us.  These processed date are than "interpreted " in a way; a first interpretation is the zero line, which is not the "real one" but already calculated.  Due to this processed data the machine calculates many parameters as the respiration rate (maybe this way): if there's a certain flank steepness above some threshold, mark it as "respiration".  But all this "calculation" and "interpretation" is not much more than anthropomancy, an ancient reading of the entrails ...  

We have no way to see if these interpretation correspond to what's really happening, besides in your case: What the machine shows cannot be related to real events: You don't have an actual respiration rate of 50.

Keep in mind that our machines are made for treatment, not for medical and scientific measurements.  (None of our machines can even detect flow limitations, because they are not built to measure such events.)

All the best,

Mike

[Sleeprider]

Just one last thought on the "weird" flow rate chart. Even if you were to take this to a Sleep Doctor, he would probably tell you that there is nothing there that requires or qualifies for treatment. About one in one-hundred might even be interested enough to check it out. The easiest way to check the efficacy of your respiration is to simply measure SpO2 and pulse with a recording oximeter. If that confirms good oxygen perfusion and normal pulse, this chart is B.S.

[SarcasticDave94]

I'm just ditto Dave I suppose. Ditto what Sleeprider said. There may be other or better pulse oxy recording devices, but I just got my Contec CMS50F. It records and loads to OSCAR. This pulse oximeter is the watch looking thing with a USB-C connection to charge and to connect the wired finger probe. Consider it as one answer.

[sheepless]

have you tried video or at least audio recording to try to see/hear what's actually happening? or ask a household member to check on you periodically through a night or two to try to catch you in the act?