Returning To Therapy with Startling Results

[OldMarineOceanside]

Mike, it is never a waste of time. I voluntarily give what I can because I enjoy it.

The ST machine is a bit of an enigma to me because it's best use is for people that don't get enough air because they have restrictive lung issues (COPD,), neuromuscular weakness that limits ventilation and obesity related hypoventilation.  It's use in complex apnea, including opiate related central apnea is a complete puzzle to me because that is not what the machine is intended to mitigate.  It's use in those applications, and complex apnea is a kludge, and I really disrespect the doctors that try to apply it that way.  It's more common than you would think.   What the ST does is provide fixed bilevel therapy with a backup rate that invokes higher IPAP pressure when a person fails to take a breath after a period of time in the settings.  With 10 breaths/minute (BPM), that means IPAP is invoked after 6 seconds of a patient not taking a spontaneous breath.  

Now, let's see how that helps you...Up to now, we have coached you to minimize pressure changes, and EPR to avoid central apnea.  Now the ST requires that you use pressure support on each breath.  That pressure support encourages more central apnea because it washes out CO2 and other reasons. So this therapy is inherently more likely to cause CA due to pressure support. It might be able to cause a breath if the pressure support is high enough to overcome the central apnea.  Once the machine detects an apnea, it will transition to IPAP. If the apnea is central, pressure support needs to be strong enough to cause a breath.  If the hypoventilation is an obstructive or neurological symptom the machine is "designed" to mitigate, the added pressure should ASSIST the inhalation of air.  ST was never intended to deal with the patient that is not making a respiratory effort, but if the pressure support is in the range of 6-8 cm, then a breath is likely if the airway is open.  What this means, is the ST makes most central patients need more machine initiated breaths because spontaneous breathing is suppressed by the pressure support on every breath.

With ASV a minimum pressure support of zero is possible, or another low value that is comfortable. I find most ASV users do pretty good on PS +2 over EPAP. This encourages spontaneous breathing.   The intelligence of ASV is that it detects your normal respiratory rhythm, and when you are not breathing your normal volume, or having a central apnea, it applies just enough pressure support for that breath to cause a normal breath.  That pressure support can be as much as 15 cm over EPAP.  The bottom line is ASV intelligently applies pressure to keep you breathing naturally and comortably on a breath by breath basis.  We set the EPAP high enough to prevent obstructive apnea, and the AutoASV can detect obstruction and increase that pressure if needed.  We then set a minimum pressure support for comfort like 2.0-3.0 cm, and a maximum pressure support which may be 8.0 to 15 cm to cause a breath when central apnea occurs. The result is usually invisible and results in near zero AHI for central, complex and opiate related CA patients.

They are very different machines, intended for different purposes.  i would be doing you a tremendous disservice if I encouraged you to pursue anything other than the ASV.  I'll be glad to work with you to optimize CPAP or ST if that is the only choice, but it's not.  Get the ASV.

Thank you. 
  My Bubble is now officially burst and I have possibly even choked on it :-(   My lack of understanding is exceedingly exacerbated by my need to take these God Awful Narcotic medicines that reduce a mind that I promise you was once actually worth something, and turn me into mud. I'm somewhat puzzled that some have so encouraged me to use this but then it I suppose, at least has SOME possibility of giving me some slight chance of doing more to help than my APAP did. Maybe not. If I am hearing a single thing you say properly, I hear it may make things even worse...THAT does not make me feel inclined to keep using it in fear it may make it more difficult for the ASV to help me when I get it? 

  The wonderful thing your post above has given me is a wealth of honesty and honest understanding as to how & WHY I will have to borrow the money for the ASV. But (no pun I promise), we have got to take a breath before buying one.  With nearly a million dollars in medical Co-pays from so many surgeries for myself, Cancer with my beautiful wife, I just NEED to take a breath. We need to wait for Seller A to give us whatever amount they are going to give us. We HOPE to get about $600.00 but very paranoid now? Also returned a mask we paid $109 for with insurance only to later be told that did NOT include shipping charges either so only Heaven knows what we will get. And when. They got it all back last Tuesday but not a word.

  When all this smoke clears and after I have a month or so to TRY making this ST work for me as best possible, we will look to options to buy from Seller #2. I actually called them and spoke to a nice woman asking about condition of "used" VS new. She admitted to not being the most well versed to answer my questions but on the ASV units they are SO expensive it seems to possibly be worth it to simply buy new, only a couple hundred dollars difference. Except then she said new only had 1 year warranty and not 2 which is crazy since anyplace else I get 2 years. But purchasing is sometime away, it simply is, we have NO options.

  IF you have time and IF it doesn't aggravate you, any guidance you may be willing to offer to help me make the most of this failed effort to use this ST, my wife and I would sincerely appreciate it.

PS-If I really ever do get the old ASV that is sitting in some storage locker someplace, I found out it is the one in this video he did of it years ago. If this is not allowed please pull it! I do NOT want to get banned and unsure what I am allowed?  But this literally could be the one he is hoping to send me    https://www.youtube.com/watch?v=vsweQiqWAYk

[Sleeprider]

There is a "Resmed Aircurve 10 VAuto on Amazon for $1890. That is about as good as I can find right now, and I thought you were looking for a machine covered by insurance. That's a lot of money for anyone.

On the ST, I would set the BPM at 8 if that is comfortable. That keeps the machine from imposing IPAP too frequently. You're going to need an EPAP (exhale pressure) that prevents OA, and for your, it's kind of hard to identify with existing data. 6.0 might be a good start. For CA, you need enough pressure support to cause a breath, so a minimum of 5 or 6 cm PS will make the IPAP 11-12.

That is a bit higher pressure support than you were considering, and a slower machine response. It is admittedly trial and error. Maybe give the settings you were considering a try, and if that doesn't work to your expectations try these with a higher pressure support. I wish you the best.

[OldMarineOceanside]

There is a "Resmed Aircurve 10 VAuto on Amazon for $1890.  That is about as good as I can find right now, and I thought you were looking for a machine covered by insurance.  That's a lot of money for anyone.

On the ST, I would set the BPM at 8 if that is comfortable.  That keeps the machine from imposing IPAP too frequently.  You're going to need an EPAP (exhale pressure) that prevents OA, and for your, it's kind of hard to identify with existing data. 6.0 might be a good start.  For CA, you need enough pressure support to cause a breath, so a minimum of 5 or 6 cm PS will make the IPAP 11-12.

That is a bit higher pressure support than you were considering, and a slower machine response.  It is admittedly trial and error.  Maybe give the settings you were considering a try, and if that doesn't work to your expectations try these with a higher pressure support.  I wish you the best.

  Painful as it is, NOT dealing with my insurance since last time in 2011 they screwed up my credit for 3 1/2 YEARS with their "mistakes".... Apria. CRAPIA to me is a DME I refuse to ever consider plus NO products other than Phillips etc. I just rather go broke or even die first. 

Is the above mentioned Resmed Aircurve 10 VAuto any better to help me than going all the way to ASV and getting it over with? I THINK seller # 2 has 10 of them slightly used with under 2000 hours or maybe 20000 (can't rememer for around $1799.00 or around $2300.00 I think (or close) for brand new ASV. If I weigh the worth of my life I feel like pay whatever I need to pay and get it DONE. ASAP, whatever it takes...If you really know the full ASV is what I NEED, that is what we will buy. END of story but sure would appreciate a couple months of help titrating my ST I just got. IF I can get by till Jan 1, 2018 my wife has a Fles Spending account that will reimburse her up to $2500.00 of her pretax dollars that she contributes to, just like a 401K. THAT would still be tight but would also "get it DONE". This idea sounds best to me. But how do I get by till then? THAT is the real question?

  But another dummy question to embarrase myself further, what does  "set the BPM at 8" mean? Not sure what BPM stands for?

[Sleeprider]

BPM = breaths per minute. Your're at 10 , or automatic every 10 seconds. 8 BPM is about a 12 second cycle.

The Resmed Aircuve 10 ASV is the best current unit on the market, and the Resmed S9 Adapt that is replaced is in my opinion the runner-up. I'm not that impressed with Philips BiPAP Auto SV Advanced based on the results I have seen.

[OldMarineOceanside]

BPM = breaths per minute.  Your're at 10 , or automatic every 10 seconds.  8 BPM is about a 12 second cycle.

The Resmed Aircuve 10 ASV is the best current unit on the market, and the Resmed S9 Adapt that is replaced is in my opinion the runner-up.  I'm not that impressed with Philips BiPAP Auto SV Advanced based on the results I have seen.

  OK, IF I am not spun out here, try lowering my BPM to 8. Then also lower my EPAP to 6? I can give that a try tonight if you suggest? And you suggest I raise the IPAP to 11 or 12 as well?

[OldMarineOceanside]

BPM = breaths per minute.  Your're at 10 , or automatic every 10 seconds.  8 BPM is about a 12 second cycle.

The Resmed Aircuve 10 ASV is the best current unit on the market, and the Resmed S9 Adapt that is replaced is in my opinion the runner-up.  I'm not that impressed with Philips BiPAP Auto SV Advanced based on the results I have seen.

  OK, IF I am not spun out here, try lowering my BPM to 8. Then also lower my EPAP to 6? I can give that a try tonight if you suggest? And you suggest I raise the IPAP to 11 or 12 as well?

Tougher night but still a really good night (for me anyway) but new pressure changes I tried MIGHT not be the best but bumped it up to try preventing Centrals. Thing is, it took an hour to get to sleep with new settings, and another hour after my bathroom break around 2AM and this is where most the trouble came from. Then I also had itching issues with the mask and pulled it up to scratch a half dozen or more times too through the night so really goofed up my stats darn it. Maybe I should leave it right here  (my settings?) for a week to get a solid picture and not change it every day for a week? That seems to be my best way to see exactly what this setting has to offer? Not sure but seems I should stick with one setting awhile for testing but being ignorant unsure of most anything these days. But then again this is a pretty steep decline I think?        So here are my results but most of the problem is from ME after a itchy scratchy night:-)  3 maybe 4 times I literally popped of both magnetic straps and pulled the mask completly UP to rub my nose and once to add saline to my dried nostrils. I dialed the humidifier up from 5 to 6 also. Still experimenting with this new and complicated (to ME) Machine.

My latest read it & weep https://imgur.com/1FnBi0m
But remember-it took me an hour to get to sleep first time to bed and after bathroom break. And during each hour I was scratching under full face mask etc trying to adjust to new pressures. MAYBE I screwed up, then maybe I just need time to adjust and get comfortable with PAP again. It HAS been since 2012 since I quit and it is freakin me out pretty good!

[Sleeprider]

I think your machine can show the mask pressure chart. Would you mind including that? The leaks were not a problem, and your time in apnea was 13 minutes out of over 7-1/2 hours.

Reviewing history, the first chart you posted with the Airsense 10 Autoset had an AHI over 27.96/hour with mostly central apnea on settings of 5.6-13 EPR 3.
We recommended removing EPR and on September 3 your results were AHI of about 10.56 with mostly centrals at 5-13 EPR off, so you had an improvement.
For September 4 you had 9.85 AHI with 5-13 EPR at 1.0. There were suggestions to try straight CPAP with EPR off, and I don't recall that happening.

In the current night you AHI was 9.34 with mostly hypopnea at 10/6 pressure on the ST. In spite of the hypopnea events, your tidal volume is maintaining at 680 mL. This is the lowest event rate you have posted, and if we can get you to be comfortable, we can hope it goes down. So far, we have not found a way to make you comfortable and achieve lower AHI.

I'd like to see what is going on with mask pressure and events, and maybe we can do a close-up of some of the hypopnea clusters. At this point I don't have a suggestion on setting changes. Is there a statistic on spontaneous breaths vs machine breaths? Also I don't see the backup rate (breaths per minute) in the chart.

I will keep an eye out for a deal on ASV and let you know if something is out there. What is your out of pocket cost through insurance or V.A.? Please do not lose sight of the fact the Aircurve 10 ST is a treatment device for obstructive apnea, not complex or central apnea. Its use in the treatment of central apnea is not part of the system design or intent.

[OldMarineOceanside]

I think your machine can show the mask pressure chart.  Would you mind including that?  The leaks were not a problem, and your time in apnea was 13 minutes out of over 7-1/2 hours.  

Reviewing history, the first chart you posted with the Airsense 10 Autoset had an AHI over 27.96/hour with mostly central apnea on settings of 5.6-13 EPR 3.  
We recommended removing EPR and on September 3 your results were AHI of about 10.56 with mostly centrals at 5-13 EPR off, so you had an improvement.  
For September 4 you had 9.85 AHI with 5-13 EPR at 1.0.   There were suggestions to try straight CPAP with EPR off, and I don't recall that happening. *=THAT is because the machine was on it's way back to the seller

In the current night you AHI was 9.34 with mostly hypopnea at 10/6 pressure on the ST.  In spite of the hypopnea events, your tidal volume is maintaining at 680 mL.  This is the lowest event rate you have posted, and if we can get you to be comfortable, we can hope it goes down.  So far, we have not found a way to make you comfortable and achieve lower AHI.

I'd like to see what is going on with mask pressure  and events, and maybe we can do a close-up of some of the hypopnea clusters.  At this point I don't have a suggestion on setting changes.  Is there a statistic on spontaneous breaths vs machine breaths?  Also I don't see the backup rate (breaths per minute) in the chart.

I will keep an eye out for a deal on ASV and let you know if something is out there.  What is your out of pocket cost through insurance or V.A.?  Please do not lose sight of the fact the Aircurve 10 ST is a treatment device for obstructive apnea, not complex or central apnea.  Its use in the treatment of central apnea is not part of the system design or intent.

  Thanks. In regards to you saying "There were suggestions to try straight CPAP with EPR off, and I don't recall that happening." Yeah that is because it was double boxed and en-route BACK to Seller #1 for partial refund offer that they were BEYOND kind enough to offer me. I will be forever grateful to them for that! 

  And again, as to needing an ASV machine I do HEAR you loud & clear and will get it the very minute I get a breath and pay just some of the over $800K in medical bills we have due....This is the BEST I can do and if I hear that seller # 2 is an honest & trustworthy place to buy, and I will purchase the full ASF Aircurve (do NOT like The Phillips units-sorry) and hope to buy a NEW unit from him since it is only about $400.00 more than his used and prefer to have the longer warranty. But I would prefer to wait until after Jan 1 2018 as I mentioned earlier. Reason is my wife begins a new year and her Cafeteria Medical spending plan renews. This gives her the option to get reimbursed for ANY medical item prescribed up to $2500.00 per year. This is how much she contributes, it is the maximum allowed my law in PRETAX dollars. Now we spend far more than that so if we use it all up first day, it simply means she no longer can submit all the day to day/week to week medical expense vouchers for reimbursement. 

  Only reason I posted this was because you said yesterday that you would be happy to guide me if I did want to still use the ST UNTIL I could afford the ASV. I said thank you and that that is what I had to do and you suggested I raise the numbers and I did. That made for a tougher night but I hung in till morning hoping for the best. I sincerely DO appreciate the help but after this post I think I will stop since I feel you are a bit frustrated with my lack of ability to buy an ASV machine this very minute. I am STILL reeling from the cost of the Airsense Auto we just returned for PARTIAL credit. This is 100% paid by US. NO insurance. I went through this earlier as well in that they use Apria-CRAPIA and last time in 2013 it took me 3 1/3 YEARS to fix my credit when THEY made error after error after error and kept billing me for equipment I never heard of much less ever got. 2100% pure fraud and with markups of over 1000%. I not only burned them with Medicare, I went directly to IRS and filed against them. My $500.00 Phillips machine ended up costing us over $1250 PLUS so many masks I cant even count that never happened and it went on & on & on. Ironically after changing insurance companies completely, I even got yet another bill fro them a couple months ago for a Tens unit I never heard of even though they are not even IN my current plan. So no, NO more insurance with their sheer fraud. There is NO "value" in using them. The VA is a joke, I won't even go there....

  So, hopefully THIS is the picture you want? I won't post anymore since I just can't afford to BUY an ASV for awhile and Jan 2018 is my target. Not before and even then, it means giving up 2 or 3 of my medications and THAT is yet a whole new can of worms I will need to deal with and hate to even think of right now. Is THIS what you wanted? https://imgur.com/cqlrCKe

Stand by for a close up in a few minutes?

[OldMarineOceanside]

Please remember it took me a full HOUR to get to sleep with the new, higher pressure. I keep fidgeting with mask and itching etc, testing to see if it will help me breath if I stop etc and THIS is showing up as hyponeas. Anyway, understanding I was awake and TRYING to cope with new prssures till just past midnight, here are 4 closeups, not sure this is what you want?

https://imgur.com/D4RUjK5
https://imgur.com/QfrTFoC
https://imgur.com/lpqxpJ0
https://imgur.com/8ORQKkn
Sometime around 5:30 AM every morning my cat begins to walk up and down my body to get me up to feed him so my sleep in that period usually is not the best.

[Sleeprider]

I won't be pestering you about the ASV and we will try to do the best we can with the ST.  With regard to Supplier #2, their reputation is great, and they are very good to work with.  I would suggest if you're interested in working with them that your establish an account and provide them with prescription information so they are aware of your needs, price sensitivity and can respond to you when you're ready.  

Thanks for the more detailed look at data. The pressures are not very high, but there is a 4 cm pressure difference between inhale and exhale, and that contrast can be stimulating, making sleep difficult.  I would just use these settings for a few days and see if you think you can adapt.  If you want to try a lower pressure, try 9/5 which should give similar results at lower pressure.  As long as it does not cause obstructive apnea, that might be more comfortable. We'll just have to see.

The closer you zoom in, the better we can see what is going on.  In the screen shot below, we see that the inhales have a lower flow rate than the exhale, and the top of the curves are flat or downward sloping.  That is inspiratory flow limitation. Eventually we will want to add a bit more pressure support (i.e. 10/5 or ) to make inhalation easier by letting the machine do more of the work.  What we are seeing in the graph below is as you approach the hypopnea at 05:54:45, respiratory volume and flow decrease.  Without pressure support this might have been a central apnea, but with the machine's pressure increases, you do take a minimal breath.  Once you are comfortable with more pressure support, we will try more air to make these hypopnea less.  Your respiration rate is 13 on these charts, so your original thought to set the BPM at 10 looks like it will work fine.  Give that a try.  The rate is good as long as you don't feel like the machine is rushing your breathing rate.

Let's keep working at it and see what happens.