10+ CA's and a bad "doctor". Left to fend for myself, should I ASV, ST, or CPAP?

[Akeyla]

I've tried typing this post up many time. It either ends up entirely too long from telling the whole story, too hard to follow when I abbreviate to much, or I just give up frustrated in the middle.

So I'm going to lay the bare basics out and see where it goes from there.

First, my doc is us useless, heard from her once in months.  DME is only marginally better, still really bad.  Had surgery on a broken foot, anesthesia put Sleep Apena on my discharge.  So I got an appt, did a home test and got a CPAP.  Doc & DME gave it to my, basically said "good luck" pretty much the last I heard from them.

From at home sleep test score was 9.1, not horrible not great.  Since After getting the CPAP and starting it, but AHI would go between 6 on a blue moon up to 15+, generally 10 - -12 range.  Oscar told me these were almost entierly CA's.

Called doc, asked for help, she said they'd go away after time.  Fast forward, they don't.  Tried BiPap, again no tuning from the docs, just here ya go good luck, same things, CA's abound.  Had an in lab sleep test, according to it, I slept best on CPAP 7cmH20.  Tried it, still 10+ AHI of CA's.  Doc said can take up to 90 days for those to go away, told her its been two months, she said let's start the counter over. I haven't and spoken to her since and don't plan on it.

Brings us to the now.  I've done quite a bit of reading, no longer completely ignorant.  Complements of Craigslist I purchased a lightly used ASV, which has lowered my nightly AHI to about 1 - 2 (from 10+)!.  I feel better, but not great yet.  I've read that ST mode is also good for CA's, and I can get an ST-A machine for a good price.  

This is clearly this short short version of a long story, but I wanted to get things rolling.  I have an appointment with a different sleep doc in November,  In the meantime, what should I do?  I'm tempted to get the ST-A and take a stab at getting the values setup correctly.  Alternatively, I could just stay on my ASV, feel somewhat better, but not quit great like I know I can.

What say you papper people?   I have an AirSense AutoSet, AirCurve VAUTO, AirCurve ASV, and can get an AirCurve ST-A/  I ask for your help on how to proceed and will fill in any blanks.  Thanks!

[Deborah K.]

To help you we need data.  The best way to do that is to download Oscar, a free apnea reporting service that provides daily charts telling us all sorts of things about each night's sleep.  At the top of every page, you will see an Oscar link that will tell you how to download Oscar how to use it, and how to post charts so that we can help you.  Good luck with getting the help you need and getting your machine much better set up to give you the therapy you need!

[Akeyla]

Very familiar with Oscar, I've been spending probably too much time checkingn number in it.

So here's a few pictures.  

We have an APAP image from when things were particularly bad for me.
There's a VPAPAuto that's actually worse.
Then we have an average ASV for me.

On a couple I've zoomed to the relevant areas.  The parts Oscar cutof are where I had tried an earlier nap and then there was five hours of no data before going to bed.

Please note.  I own, having purchased with my own money from it's former owner an AirCurve ASV.  Insurance owns the AirCurve VAuto.  Using the applicable cables and jtag ports I dumped the firmware from tthe ASV to my linux system, did the same with the VAuto, backed both up, and then flashed the ASV to the VAuto.  This way, the doc / DME can see (if they actually looked) that I'm using ASVAuto mode on an AirCurve VAuto (which  you shouldn'tbe able to do, but they don't notice.)  Thus I stay compliant for insurance, while getting ASV.  I wasn't going to suffer 3 more months of 10-20AHI before the possibility of gettting ASV when I knew how to make it happen myself.  One side effectt of this.  As I understand, ASV machines don't record CA's as they're not suppose to be possible, but from when I can tell, on that machine they show up as UA's instead.

OK, there's some more puzzle pieces of my jigsaw.  These images make ASV seem to be working, but I believe I could get to where I am now using a properly setup CPAP or ST.  I'd prefer not to be on a ventilator is I don't have to.

BTW, Male, 44 y/o about 190lbs, semi-active, healthy eater.

[SarcasticDave94]

Hi, first off you will very likely not ever want the ST. Inhale pressure is on then off with no variation. It's basically static BPAP with timing and a backup rate. Yes, at one time it was the answer to Central Apnea, but ASV was issued and ST became obsolete.

Worse for ST, it might be acceptable for those with lung disease, but again a machine was issued called ST-A and the ST became obsolete. Bested by better, more advanced devices, ST should be forgotten.

Onward, unless you have lung disease, the ST-A should be left out of the picture. It'll probably help, but goes into overkill territory in my opinion.

ASV is the right answer if you need to kill off Central Apnea effectively, completely, consistently. Now, to the question, do you need ASV? Let's find out.

You had at least one sleep study and maybe more. Let's start with the first, post the redacted detailed report. If you do not have it, get it ASAP. Even your silly doctor will have to issue you a copy, because if she hesitates, say that HIPAA law says the patient requested the report, the patient gets the report, period. Washington is in the US, so yes this works. If they still won't comply, report Dr. Donothing to your local or regional medical board about it.

Anyway, the above is what we normally do to help a CA sufferer get ASV. You have one, so fine, use it, but get it tuned proper. My opinion as a former ASV user, let's click the Dial on the ASV just a bit to get yours a bit better. It might take a small amount of trial and error.

Current settings

ASV Auto mode
EPAP 6-8
PS 3-8
IPAP not manually editable, but it's 9-16

OK your current isn't bad, but let's expand the max just a bit, because ASV can take care of the lingering events just as well. The catch is if it's comfortable while doing so.

Proposed action is move both EPAP Max and PS Max up 2 making settings as follows

ASV Auto mode, no change
EPAP 6-10
PS 3-10
IPAP 9-20

Try it a night and post even 1 standard OSCAR. Include your take on how you feel for it, positive or negative. If you don't like the change, revert back to the other settings.

If it were me, I'd skip the other machine acting like ASV, some others have used an AirBreak method, and while it's mostly functional, it's not quite the same, as in it's not 100% a duplicated ASV. The algorithm running it isn't quite able to pretend to be the Central Apnea killer the real deal is.

So this has us circling back to your test you've already done. We're going to attempt to help you prove ASV is right or wrong for you and Dr. Donothing. If we can prove it is right, we may get the ASV purchase to be either be reimbursed by insurance or force them to buy another one, if that's within your consideration. The current VAuto will then go back as you in correct consideration won't pass compliance.

Let's see where this goes based off of the sleep report. Keep them on their toes, don't let them rest. You may have to fire and replace Dr. Donothing if insurance allows this for you. So include that basic info as well, as you see fit.

[Akeyla]

Thank you so much for your reply.  Just what you typed up for me is more effort than my doc has bothered with.  Just got up, feel decent today, thought that I would post Oscar data from last night.

The first hour and a half or so I was trying just ASV instead of AutoASV.  It wasn't a great hour and a half.  I got up, checked my post here, and that's when I saw the initial request for Oscar data.  Thus, the awake period from 11.30-12.15 or so was my typing up that post.  Then I set it back to AutoASV for the rest of the night and slept fairly well.  I'll request the results of my studies today, make the changes, and certainly keep this updated.

I will note regarding the re-flash of the firmware.  The idea came from reading about Airbreak.  I found and used a fork of Airbreak under more active development.  I want to stress this part though, I did not use the pathing option that is suppose to unlock everything.  I only used it to dump firmware from a real ASV machine and flash to the VAuto.  I won't contest your comment that it's not the real thing and differences remain, just wanted to state that it's not the patched firmware that could be made via tools.  I'd prefer to use the real ASV machine, but still want the clock time I get by using the scripted one, and I think of the real ASV as a backup, should I have to get another AirCurve, or replacement etc, I have it as a stop-gap, thus don't really want to use it.  It was a miracle I found it when I did, 1000 hours on it, $400.
 
Thank you again for taking the time to help, greatly appreciated.

[Jay51]

Looking at your OSCAR, your respiratory rate, inspiration time, expiration time, and tidal volume look like they may be skewed.  It may be because of the airbreak software?  

If you don't mind, please post a 3 minute close up zoom of a time when you were asleep.  Say like midnight 12:00:00 to 12:03:00 to see if the ASV is correctly reporting your data to OSCAR.  Just click mouse at 12:00:00 and drag to the right until 12:03:00 and upload that image.  You can even do another 3 minute zoom anywhere you like when you know that you were asleep to help clarify.

[Akeyla]

Certinaly, file is attached.

I want to reiterate and explain a bit more about my flashing process.  Only a single file was used from Airbreak-plus, and I've looked through its code.

I don't know if I can link or not, we'll see.

github.com/Asmageddon/airbreak-plus/blob/master/tcl/airsense.cfg

The code executed was via Linux Bash was:
sudo openocd -f interface/stlink-v2.cfg -f 'tcl/airsense.cfg'

in a second window
telnet localhost 4444

where I did the dump and flash.

So none of the modifications airbreak was created to do were implemented, mainly memory addresses for taken from the airsense.cfg.  The airbreak-plus version is updated to also be more compatibile with AirCurve, they just didn't update all the names.

This isn't to say that it's a perfect copy of a true ASV machine, just that it far from one that has been "patched" via the airbreak software.

I just don't want people getting the impression I grabbed the original program ran the full cracked and am using an entirely recoded / modifieid binary / firmware file as airbreak can do.

Side note.  I work IT in a Hospital and have worked IT since the 90's.  I'm comfortable programing, reading code, and using Linux.  Also if you ever need care, do NOT come to the hospital I work at, it's terrible.

[SarcasticDave94]

Understood about your method, I just shared some thoughts about it from the perspective of past things being dealt with on others trusting it be a full machine and therapy change.

[Akeyla]

Apology, the longer description was more directed to Jay51 who asked for the 3 minute slice due to uncertainity of the alignment possibly from Airbreak.

SarcasticDave: I'm going to try your settings tonight on my actual ASV, then the next day on my frakenstein ASV, and see if there's any material difference between the two, i.e. the suggested alignment issue mentioned by Jay51.

Thank you again.

[Jay51]

Thank you for all of that, Akeyla.  By counting one minute, it does look like you respiratory rate is about 8 or 9 or so (and your median rate is 7.6 for the entire night).  Normal is usually between 12 to 20 per minute.  

Tidal volume looks very high (unless you are a very tall person).  It could actually be accurate though (since you seem to take long, deep, infrequent breaths during sleep - from the data).  Normal for the average male is in the 400's and 500's and possibly 600's. Possibly high 300's maybe. 

An inspiration time over 3 seconds usually points to some resistance in your airway (it is usually in the 2 second range or even 1.? second range for normal. 

3 second expiration time seems abnormal also, but could be correct.  

Comparing the 2 machines would be a great way to solve this debate.  

I hope you get this figured out and get the best therapy.  I am here to help like Dave if you need me.