Every dang sleep apnea problem under the sun

[Morgannon]

Hello everyone;

I am what you would call a serious challenge.  I literally seem to have every single sleep apnea problem under the sun. Most of these seem to be arising from existing asthma/COPD which has been exacerbated by an undiagnosed neuromuscular disorder (so far not ALS).

In no particular order:

-Moderate OSA seemingly caused by floppy throat muscles.  Perhaps the tongue base is the main culprit?
-Some centrals which I think are from my body's CO2  regulation being way off
-Hypopneas/hypoventilation from shallow breathing from either the NMusc disorder or asthma

I'm hoping to get relief from a single machine.  But I'm prepared to use several if I need to.  Like right now if there wasn't a single machine I would be trying the following arrangement:

-Breathing cuirass with volume guarantee as main motive power - solves centrals and volume support
-BIPAP/CPAP to address OSA and keep airway stented open
-going to try the AerSleep II via clinical trial - negative pressure collar to hold the throat open during sleep.  Hoping that will replace the BIPAP.

I'm trying to have my wife upload my most current work with my BIPAP.  In a nutshell I was on ASV for a couple of hours getting used to it.  Noticed that I was in perfect synch with the machine but volume was dropping over the time I was using it.  I understood this was a bad thing and then switched to BIPAP in an attempt to keep my volume higher. Was worse than ASV - felt like it was an harsh schoolmaster keeping me from relaxing my breathing effort.  And breathing was not synching up well with the machine.  As I was winding down I noticed I was skipping breaths and on.  I wasn't sure what kind of pattern I was doing.  Felt like I would miss a breath and then try to catch up.  

I'm really upset guys. I can't shake the deelinf that I'm screwed no matter what happens with the possible disease I may have.  Almost ready to upload data.

[Morgannon]

Me using auto mode attempting to show baseline breathing.

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me on bipap trying to fall asleep.

[Morgannon]

Sorry if the data is botched or hard to read.  I am still trying to figure out this software.  Plus I'm nervous as hell about pending findings.  Can anyone at all take a gander at this and tell me if this is ok?

[Sleeprider]

Morgannon, your results suggest good efficacy using your Vauto in S-mode with EPAP 4.0, IPAP 10.0 (PS 6.0). These graphs are sort of the mile-high view and we are going to need some zoomed shots at the 3 to 4 minute resolution to see what is actually going on with the respiratory wave form. On 2/9 we see a massive tidal volume of 960 mL at 14.8 bpm and a massive 14.75 L/min minute vent. On the basis of one graph I can't say if this is your normal but the respiration statistics on 2/9 are very over-ventilated for most individuals. It seems you may have hyperinflated lungs which is often associated with COPD. I think it would be helpful to you to use a recording oximeter to ensure your oxygen saturation needs are being met. The more sensitive issue is that we can help you to reduce this hyperinflation by shorting the time of inspiration at IPAP pressure, but we don't know if that is what you medically need. Until we learn more about your history and comorbidities I think we should reserve judgement and recommendations. You don't mention anything about your medical care, but most of these issues are under the specialties of pulmonology and neurology. Hopefully your sleep specialist has a primary specialty in one of those disciplines.

You said you were on ASV at one time but experienced declining respiratory volume during the night. That is why ASV is not recommended for your conditions, instead the advanced bilevel needed for obstructive and neurological pulmonary diseases where maintenance of respiratory volume is a priority is the ST-A. The easiest way to explain this is to link to the Resmed Clinical Titration Guide and have you read the sections on ASV on page 28 and ST-A on page 34. https://document.resmed.com/en-us/docume...er_eng.pdf Hopefully this reference will get you closer to understanding what machine is best suited to your conditions and needs. My impression is that you are hyperventilated and should consult your specialists on an appropriate path to take to normalize your respiration. The occasional flow limitation and hypopnea may be "positional", caused by chin-tucking as discussed in this article. http://www.apneaboard.com/wiki/index.php...onal_Apnea

[Morgannon]

Sleeprider thank you so much for replying - and yes I have larger lungs.  Have had asthma for decades so that would be par for the course no?  These symptoms all started popping up when my neuro issues started.  My o2 is always in the 97-98 percent range.  My Co2 in my blood is high end of normal and bicarbonate is too.  Although my blood is more basic than it should be.  I'm thinking I have some degree of co2 retention that is being compensated for.

Got a top notch neuro sleep / Als expert on my team who is checking me for neuro disease.  So far she has ruled out ALS but is testing me for several other conditions with similar presentation.  Also have a pulmonologist coming on board to help with everything.  Will make a determination between asthma or COPD.  So far I seem to be borderline between the two.  

Does any of my breathing patterns suggest Cheyne Stokes or anything similar?  Or just an aging huffer and puffer puffing away?

[Sleeprider]

I don't see any evidence of Cheyne-Stokes. CSR is flagged by Resmed, and of course shows up when looking at the minute vent trace as a regularly oscillating volume, usually punctuated by a CA at the low flow point.  Your current machine is meeting your needs by all appearances, but if your doctor want to specifically target volume, the the iVAPS mode (intelligent volume assured pressure support) of the ST-A offers a lot more options and provides the backup rate needed for neurological or central events when spontaneous respiration fails.  Unlike ASV, it will not reduce its target minute vent based on a diminishing respiratory volume through the night, and indeed if you read the reference I provided above, Resmed warns (titration protocol page 32):
• ASV’s algorithm is not cleared or appropriate for the following patients:
- Chronic and profound hypoventilation
- Moderate to severe COPD
- Restrictive thoracic or neuromuscular disease
• ASV will likely under treat patients with the above conditions, and you should consider moving to iVAPS

As you can see, the ASV is specifically contraindicated for your conditions. While it appears your current settings in VPAP-S are meeting your unusually high respiratory volume needs, I'm certain the ST-A is s better long-term solution. Other than that, I'm reluctant to make any specific recommendations, but will be glad to help you source information that may make your discussion with your medical team more productive.

[Morgannon]

Thank you Sleeprider!  My case is really strange isn't it?  Question/. What on my chart constitutes unusually high respiration needs?  Just trying to educate myself here.

Also since this condition I have is contributing to breathing muscle weakness, what would I or could I use if I had a mix of the two?  

Finally since im having a hard time exhaling air that would mean co2 retention, what specific setting would I use for that problem?  I read that asthmatic and COPD patients have intrinsic PEEP, so I'd try to minimize that right?  Or would I increase it to try to keep the airways open on exhale?

Willing to try anything at this point!

[Gideon]

FYI I e been helping Morgannon on Reddit with no data and hase suggested, with no data and based solely on his words that the VAuto may not be the correct machine and he acknowledged the diminishing response after I pointed out the possibility for those with COPD.

Anyway just FYI I was pushing him here and to post data which I still haven't reviewed and toward IVAPS

SR thanks for picking this up.

Morgannon SleepRider is among the best.

[Morgannon]

Gideon both of you guys are the best honestly - you are giving me some hope where there was none before.  Thank you so much for both of you helping me!!!

Is there a chance this still could be my asthma acting up?  I still have a bronchodilator response with my emergency bronchodilator.  And I'm not quite to the point where I am in COPD territory according to my spirometry results.  My FEV/FC is 0.74 and I think you need a 0.70 to have COPD.  I'm desperate to have just asthma and not COPD!  Also nothing is showing up on CT scans whatsoever.  Absolutely clear lungs.  And I've never smoked in my entire life!  So it's definitely strange.

Are either of you gentlemen able to interpret spirometry tests at all or is that out of the wheelhouse / not acceptable topic?  

Thank you again,

Morgannon

[Sleeprider]

Morgannon, keep posting additional results so we can develop a baseline of what is going on. The more we see the results of your therapy, especially with varying positive pressure condition, the more we can help. The biggest handicap we have at this point is we only have the results from 2/9/23 to work from. We will not interpret or diagnose medical conditions on the basis of spirometry, but you're welcome to post the test results as we can see if there are departures from normal and associate that with your positive pressure therapy. You are working with a specialist medical team that will do the diagnostics. Keep in mind that spirometry or lung function tests are only one piece of information used to evaluate your respiratory flow and volume against an expected range of normal. It is not conclusive by itself of any condition.