New to me, ASV, Initial Questions

[Geer1]

So let me get this straight.

Home sleep study showed mild to moderate apnea with minimal oxygen desaturation.

Thread started with an ASV getting AHI under 5 with minimal titration attempt. Some apnea were still present but instead of following protocol and increasing EPAP recommendations for ST-A were made.

ST-A, a machine designed to maintain ventilation in order to maintain O2 desaturation which based on home sleep study does not appear to be a problem.

Now pressure support values are through the roof and AHI is as high/higher than without PAP. Recommendation now is to start monitoring O2 saturation (why not before ST-A recommendation?) even though it is more likely that it is through the roof and causing central apnea than it is low.

This thread is like watching a train wreck. I hope all involved take a step back, read through all the data again and revise treatment recommendations.

That is enough stepping on toes for me, I'm out. Good luck.

[Sleeprider]

I don't disagree with Geer1, and sometimes it's important to look back at the history of a thread to see how things may have gone awry. I think I was the first to raise the possibility of using iVAPS in Post #52 in response to to Whitenoise raising a number of issues related to tracheostomy and a vehicular accident with spinal cord damage. Prior to that, the focus on increases in EPAP and use of a soft cervical collar were resulting in good progress that had gotten AHI under 4. Leaks remained a problem, and there were clearly additional optimization that might have made ASV, or for that matter, a standard bilevel successful. All of a sudden by post #67, Whitenoise had a ST-A and the direction of this thread changed to supporting his use of that machine.

In the course of this thread, what is misplaced is that neither ASV nor ST-A may be indicated at all. There is no medical evidence or statement that Whitenoise fails to spontaneously breathe. We do not have a history of central apnea or that the spontaneous breath rate is anything other than 11-12 bpm. I lost track of this, and the fact this member is self-diagnosing and treating with bilevel machines that may be inappropriate to his needs. There is indeed nothing in the history that suggest he could not achieve perfectly good therapy with a Vauto. The current status of therapy is an AHI of just over 8/hour with massive pressure support and leaks. I think the very high pressure support may be a function of leaks rather than respiration as the ST-A has "robust compensation for leaks" according to the manuals. Thanks to Geer1 for bringing the therapy question back to fundamentals.

Based on that insighful input, I think we might want to try a radical change in approach, and get away from the assumption that Whitenoise need any form of backup rate or fancy respiratory assist algorithm. How radical? I think we should take a look at VPAP S mode with EPAP 9.0, IPAP 13.0. Use the soft cervical collar and work on leaks.

[Whitenoise]

I don't disagree with Geer1 or SleepRider's wish to pause and take a step back. I think that is often wise in complex situations and can often provide added insights which affect the ongoing approach in a beneficial manner.

As SleepRider stated, We began with approaches on the acquired ASV machine which bore excellent fruit ultimately and eclipsed anything I have been able to achieve over the course of the last 10 years living in a town which I have found to be incredibly unsupportive by the local Sleep specialists, and at times even arrogant and unfriendly to my very unique medical history and did feel left to my own devices. I never gave up on PAP like so many but had wished to at times.

After finding this particular forum I have received support and feedback that has taught me enough to make progress in my overdue quest to sleep and enjoy life more.  I even dare to have Hope,,,

Initially my intent was to gain understanding of my Aircurve ASV, but  there was no need to go into much detail the of my own history yet. As time went by I then detailed my complex medical history which included medical approaches for sleep medications which actually were discovered by me to be causal in detriment to my breathing rate and depth of breath or drive. I changed that and improved my breathing from a rate of thready 4 (while being monitored by a Pulmonologist who never acknowledged accurate causality despite the evidence) to a consistent 10 at the least. I will continue to try rational options and will only continue that which has proven itself to work in a positive manner. That which doesn't, falls by the wayside and I continue on.

The revelation of these details (we all acknowledge we do not treat or diagnose diseases only share knowledge) is what led to my own related observations
about what may have been lacking with the ASV and the possibility that other options beyond it might offer more benefit beyond AHI numbers. I understand that there are folks out there who still feel fatigued and foggy despite their "less than 5" AHI numbers and I might count myself as one of those.

I think we are doing well here on this valuable group, and Geer1's contribution is most certainly included in that. Checks and balances are a good thing!

I will begin trial of S mode EPAP 9.0 and IPAP 13.0 and continue to learn what works best for me, and in this manner we all gain more information to continue to make informed decisions with or without medical support in the "Apnea Arena".

J

[Sleeprider]

I'll clarify that we will support any approach you want to take. We can learn something from S-mode, but we can also continue to fine-tune the settings in iVAPS to minimize events. A part of that is certainly an increase in EPAP, and refinement of the iBR and maximum PS. I replied to Geer1 in the context that my toes are not stepped on by an opinion that differs from my own, or that suggests looking more deeply into whether our current approach is appropriate. I think that comment was valid because I really haven't been thinking critically about our approach, but instead I have been taking a more simple problem-solving approach to issues as they arise. Does that make sense?

[Whitenoise]

SR  It absolutely makes sense. It's certainly expected that one can not take in information as a whole with only pieces in hand at any one moment, but rather must use what one has and add to it with the goal being new approaches for new scenarios which are of course learned over time.

Stagnation is seldom progress. Risk vs Benefit, and Whatever Works tend to be my mantras,,

Prior to the posts I'd already begun experimenting with the other modes this morning a real time manner, realizing there is no one "best approach" till we try and fail and ultimately succeed right?

As I recall, Edison tried "a bit more" than "10" filaments before that darned glass bulb sustained light.

I'll keep you updated on things I try that work or fail and I hope you continue to share your wide knowledgeable base with me on what you might try yourself in the same situation.

J

[Geer1]

I am glad my criticisms were accepted as they were meant.

Whitenoise, I hope you don't take offense to this but you don't even know the basics of PAP yet. You need to understand EPAP, PS, IPAP, backup rate, timing controls, their normal ranges, how to adjust them, and what they do before you even try self titrating with equipment like an ST-A in IVAPS mode. What you are doing right now is the equivalent of jumping in a space ship and trying to fly to the moon without the knowledge or training on how to do so.

The ST-A has functionality no other machines have, it is meant to help maintain oxygen saturation and breathing rate for patients that can't do so on their own. The problem with ST-A and even ASV is that if their functionality is not required they often inhibit treatment not help it. They have extra functionality to try and keep severely sick people alive but they lose other functionality for comfort settings etc which are more important for the majority of users. This is also why every PAP treatment starts with a CPAP machine then progresses to bilevel if necessary, then ASV, then ST-A. It is also why every titration protocol is to start with the lowest pressures and settings that provide comfort and then step up to these less comfortable but more functional systems only if required.

Pacemakers are similar to PAP machines (except regulate heart beat instead of breathing), your jumping to an ST-A to treat breathing issues without known data supported breathing issues is like getting a pacemaker installed because you feel like you have the odd heart flutter. It is going to do more harm to your treatment then good.  


Too many decisions so far have been based on opinions and direction (often from yourself steering others in a direction which they then agree to because there is limited data to argue otherwise). You need to take a step back, start at step one, collect the data and make informed information on the data. You also need to know when to realize that your health issues are other health issues and not actually breathing issues. Many members fail to do this, I call it going down the PAP rabbit hole. Forever looking hoping to find the solution to a problem that doesn't exist (or if it does is caused by something that PAP doesn't help).      

Take Sleepriders advice. Step back to S mode. Fix your other obvious issues. Obtain a SPO2 monitor to start tracking oxygen levels to see if something like ivaps mode is required. Start collecting and sharing data regularly and Sleeprider and others will be able to logically guide you through the titration process using the data. Learn the basics of PAP treatment, learn how to interpret your data to the point you can guess what your body is doing based on reading your flow chart. Get a night vision camera and record yourself sleep, it will help you learn to interpret your flow chart and you may learn a bunch of other helpful information about your sleep quality.

Hopefully that makes some sense.

[Whitenoise]

Geer1,

No offense taken and yes, what you have written does make sense.  Though I have been a member here for only 2 - 3 months, I participated in others mostly as a reader not so much as a participant.
My goal is to learn more than I do, and some of us will of course have more experience and background then others in a varied manner based on the lives we have been living before and after Sleep Apnea. Your input is certainly valued by me.

Remember though, we all started somewhere, and what we present here on this group can never be a solid and thorough representation of everything about us as far as "knowing", so I could also say you dont know everything about sleep apnea as well and it would be fair also. The one's here choosing willingly to share knowledge and advice all have my respect, no matter their the depth of it.

My title,  New to Me, ASV, Initial questions has grown much further than I had anticiopated when posting my first thread. I had been using an Airsense 10 Auto Set, on and off for 10 or so years and before that a straight Cpap. The ASV fell into my lap in a manner of speaking and I came here to see what I might learn about it, and especially as to whether it might be useful to me beyond what I had tried, hence the title.

I asked for and received answers which changed as I provided more information. As it turns out ASVAuto feels great and and works very well for me. At first I was quite hesitant to try it wide open, but with the folks here who most directly guided me we discovered together how to make it work very well for me.
I used it last night to return to a known stable setting and it breathes with me in such a natural manner I actually like using it. It has taken me forward in a big way.

Is the ST-A going to be the last stop for me, perhaps not, but I do understand the kinds of health issues that it was designed for, and I fit a chunk of that  profile.

I don't plan to go into excrucitating details about my health issues on the internet, but suffice it to say they are far beyond standard issue sleep apnea, and I have worked mostly alone on this through trial and error with a logical approach. I may not yet know how to read my charts at a glance, but I am moving in that direction in a short time compared to the past. I credit this group and folks like you for that and expect to continue to learn, make mistakes, correct them, and make progress.

I have found the standard medical model most flawed through my journey, and especially so in the cookie cutter make a buck diagnosis and "treatment" of Sleep Apnea. 

Most of us here likely arrived due to it's failure, so I am thankful we all found each other, to share and to learn, and to try.

[Geer1]

I'm glad you went back to the ASV, your results were better and your spontaneous breathing ability appears to be fine. An oximeter will help confirm your oxygen saturation is adequate and increasing EPAP slightly may help reduce the few apnea you were still having.

The easy breathe waveform used by Autoset, Vauto and ASV (can't remember about ST-A S mode) is much more comfortable than the St-A IVAPS rectangular waveform and this does have clinical relevance. I've always been amazed that even just shifting the easy breathe waveform slightly with timing controls can effect some peoples treatment, I can only imagine how rough the rectangular waveform is for people that don't need it.

IVAPS uses this rectangular waveform because it is more effective at initiating/forcing you to breath making it more effective in patients with hypoventilation which is what IVAPS is meant to treat. If an oximeter shows hypoventilation to be an issue then that is when using IVAPS use may be warranted.

Edit: Just to be very clear IVAPS might be warranted based on your medical history but this can easily be determined with an oximeter before starting IVAPS treatment. If your SPO2 levels are fine then there is no reason to try and maintain higher SPO2 levels with IVAPS.

[Whitenoise]

I reverted back to the last best method and machine (Resmed Aircurve ASV) as it was logical. When one hits a bump that's what you do to stabilize. Once stable, It's only natural, to re-assess, and make decisions based on the evidence gained before proceeding to the next step.

I'm very pleased with how things have progressed since starting this thread on Apnea Board, which includes obtaining the ST-A machine, which is, or will be, more fitting toward future changes resulting from my advanced breathing issues of diffuse and progressive partial paralysis which includes vocal cords that operate at 5% of normal.  Having a neuromuscular condition in addition to a fixed airway certainly has been a challenging way to live, but even more so when the "the ones we look to for answers" are not actively listening to us or carefully considering much beyond their own traditional training, conditioning, and or "Egoic self interests".

What I have found here is truly unique of the numerous decades I have been adapting to an ever changing set of detracting physical circumstances, in that for the most part, I was warmly welcomed, given reason to hope, provided quick essential information, and thoughtfully guided toward directions that spiral upward.

I'm not going anywhere, just wanted to say a public thank you to all of you that share what you know in an effort to support those who have need of answers that are very hard to come by.

Jim

[Sleeprider]

It’s always interesting to me to see how people respond to the ST-A and the various inputs. We don’t see many of these machines and most that have been trying them on the forum are like yourself, not working under the orders of a doctor. Without being too specific or linking I’m curious how you sourced it. They are rare to find, expensive and I know Dave would really like to get one.