Sorry to start new thread but need nap

[Morgannon]

Some good news about AVAPS and treating centrals:

https://pubmed.ncbi.nlm.nih.gov/35371406/

[Sleeprider]

Your tidal volume varies withing a very normal range, and the median is high. You have not failed CPAP or your Vauto and have a low AHI. While you have created considerable arguments about your health and respiratory issues, none of them actually appear in the Oscar data. There are occasional centrals or breathing pauses, however the incidence falls below clinical guidelines for medical necessity, and in spite of testing and some theories, you don't have a medical diagnosis of any qualifying condition for ASV or AVAPS. I have rarely seen iVAPS or AVAPS deliver comfortable, effective therapy with the majority of individuals that come here with more severe respiratory issues, and cmpman eventually changed away from iVAPS for that reason. He is probably much more qualified than I am to discuss what this therapy is like, but I know you are imagining riding on a machine that produces perfect breaths of even volume and rate without ever thinking of it, but that is almost never the case with iVAPS. It looks ragged, uncomfortable and invasive. I have said it before, and I'll say it again; your therapy is very good and effective. The fact you are tired may come from outside that therapy and you need to focus on finding a solution(s) that looks at root causes that may not be respiratory or have anything to do with EPAP, IPAP and PS, or a normally variable tidal volume, because those issues appear to be resolved and not likely the problem. You are certainly feeling fatigue and pain and it's not my intention to argue that, but to suggest you may be too focused on your PAP therapy as a solution.

[Jay51]

I agree with everything Sleeprider has said.  Right now you are doing well enough with your current machine.  In the future, if your situation progresses, you can always move to a more advanced machine.  

That said, I have tried ASV, IVAPS, and AVAPS.  I personally liked AVAPS the best because it has the most flexibility and most setting combinations of all 3. 

ASV was not bad once I got used to it.  I liked the flexibility of the breathing rate that it's algorithm calculated.  The key is to not mask up until you are just about to doze off so your rate and tidal volume are as low as possible.  

IVAPS seemed the most rigid and ROTE (routine and mechanical way of doing something) of the 3.  Tidal volume can be adjusted up and down.  It only has a breathing rate setting, so getting it just right by experimenting is the key.  Rate should be set a little bit lower than a person's normal rate.  A benefit of IVAPS is the maximum pressures it can provide (very high PS and IPAP) if necessary.  It can treat CA's with it's programmed rate.  

AVAPS.  Flexibility, flexibility, flexibility.  It has an "auto" rate setting along with a set numerical rate you can program in.  It has autotrak (which actually does provide a back up rate, but it flexible and works with the patient all night long based on spontaneous breathing).  The max pressure is not as high as IVAPS, but super high pressures are usually not needed in most cases.  It can treat CA's with it's numerical rate of auto adjusting autotrak backup rate.  

From my personal experience, if you have somehow gotten a chance to get the AVAPS, you might as well try it.  If it doesn't work for you, you can always fail compliance and give it back and go back down to a lower level machine.  I hated it in the beginning and was super intimidated by it.  Now I like it a lot.  I don't know of anything with more options than AVAPS.  Tidal volume can be raised or lowered.  A minute vent can also be programmed into it.  I think a minute vent might be able to be programmed into IVAPS also somehow.  

Sleeprider, Cmpman, and myself have given you our best.  The decision as to how you would like to proceed is yours though.

[Morgannon]

Thank you guys.  I really appreciate all of the input.

I'm really sorry that I am confusing the issue with medical possibilities.  I do have one new diagnosis to report - I have some sort of inflammatory process in my lungs that might be causing the sensation of increased effort of breathing.  We are trying to figure out now what exactly that inflammatory process is because there is nothing showing up on CT scan.  If it were COPD it would probably show by now.  My pulmonologist thinks it might be small airways disease.  And it might have been going on for a while.  But there is a neurological component to it because I am having arm and leg weakness and difficulties swallowing.  Or the lung disease could have always been there and the neurological weakness is making it worse for me to breathe.

Anyway, lowered the pressure to my original settings and it seemed to do the trick.  Maybe I had too much pressure support.  

Could someone look at the days when I had the highest centrals and tell me if there is a correlation between position and/or mask leak and those centrals?  I seem to get them in tandem with mask leaks a lot.  

Morg

[cmpman1974]

Thank you guys.  I really appreciate all of the input.

I'm really sorry that I am confusing the issue with medical possibilities.  I do have one new diagnosis to report - I have some sort of inflammatory process in my lungs that might be causing the sensation of increased effort of breathing.  We are trying to figure out now what exactly that inflammatory process is because there is nothing showing up on CT scan.  If it were COPD it would probably show by now.  My pulmonologist thinks it might be small airways disease.  And it might have been going on for a while.  But there is a neurological component to it because I am having arm and leg weakness and difficulties swallowing.  Or the lung disease could have always been there and the neurological weakness is making it worse for me to breathe.

Anyway, lowered the pressure to my original settings and it seemed to do the trick.  Maybe I had too much pressure support.  

Could someone look at the days when I had the highest centrals and tell me if there is a correlation between position and/or mask leak and those centrals?  I seem to get them in tandem with mask leaks a lot.  

Morg

Hard to get better results that last night.  I don't think anyone here wouldn't be thrilled with your typical AHI numbers, leak rates, etc.  Even a totally normal healthy individual is said to experience some events at night so targeting a 0.0 AHI is a fantasy. Though  you weren't far off from fantasy-world last night.

As said, I am not a fan of IVAPS.  It was a very strange therapy where it felt like the BPAP machine was pushing inappropriate breaths conflicting with my own breathing.  It's erratic as it adjusts by the minute based on your own actual Vt.  It will push a breath more forcefully to meet a Vt goal or take the breath for you if you aren't on target with the programmed numbers.  This is great IF you truly have a low spontaneous trigger rate or struggle badly to breathe due to NMD, COPD, OHS, or other possible scenarios.  As always, I mean verified low numbers/tests proving necessity.  This machine does not help if working off perceptions that can't be proven.  I was put on it because my O2 was going low, but no one paid attention to the fact my Vt was already high.  if the goal was to ventilate better to expel more CO2, it is critical to monitor this aspect and prove it's being achieved.  The question would seem to be what Vt is needed to expel the appropriate CO2 amount via testing?  Even then, a very high Vt probably has its own risks so the big picture always needs to be looked it.  Bottom line:  It is NOT a fun, enjoyable therapy unless 100% needed and then you live with it and do your best.

I will admit I had my best AHI numbers on IVAPS, but I was still exhausted and mentally drained. The trade-off wasn't worth it and under both therapies AHI still is in the 'acceptable range' so I'll take BPAP-S. Also, IVAPS did not improve my O2 figures being reported by my device. That was said to be the whole purpose of being on it. Strange!

This is completely unrelated to the rest of my comments, but I was curious. You said your wife also has sleep apnea and could possibly use your old BPAP if you get a new machine. Are you saying she is not treating the sleep apnea currently or perhaps using a different machine such as a common CPAP? I would assume a medical doctor would readily know the appropriate sleep therapy and be prescribed the best machine for his/her issues. I hope your spouse's sleep apnea is being treated well. If on CPAP now and treatment is effective, not much reason to shift to a new machine for the heck of it. Just a random thought....

Regarding your transient weakness episodes in your arms and such, has the neurologist trialed that oral MG pill to see if you had any favorable response?

[Morgannon]

Hard to get better results that last night.  I don't think anyone here wouldn't be thrilled with your typical AHI numbers, leak rates, etc.  Even a totally normal healthy individual is said to experience some events at night so targeting a 0.0 AHI is a fantasy. Though  you weren't far off from fantasy-world last night.

As said, I am not a fan of IVAPS.  It was a very strange therapy where it felt like the BPAP machine was pushing inappropriate breaths conflicting with my own breathing.  It's erratic as it adjusts by the minute based on your own actual Vt.  It will push a breath more forcefully to meet a Vt goal or take the breath for you if you aren't on target with the programmed numbers.  This is great IF you truly have a low spontaneous trigger rate or struggle badly to breathe due to NMD, COPD, OHS, or other possible scenarios.  As always, I mean verified low numbers/tests proving necessity.  This machine does not help if working off perceptions that can't be proven.  I was put on it because my O2 was going low, but no one paid attention to the fact my Vt was already high.  if the goal was to ventilate better to expel more CO2, it is critical to monitor this aspect and prove it's being achieved.  The question would seem to be what Vt is needed to expel the appropriate CO2 amount via testing?  Even then, a very high Vt probably has its own risks so the big picture always needs to be looked it.  Bottom line:  It is NOT a fun, enjoyable therapy unless 100% needed and then you live with it and do your best.

I will admit I had my best AHI numbers on IVAPS, but I was still exhausted and mentally drained.  The trade-off wasn't worth it and under both therapies AHI still is in the 'acceptable range' so I'll take BPAP-S. Also, IVAPS did not improve my O2 figures being reported by my device.  That was said to be the whole purpose of being on it.  Strange!

This is completely unrelated to the rest of my comments, but I was curious.  You said your wife also has sleep apnea and could possibly use your old BPAP if you get a new machine.  Are you saying she is not treating the sleep apnea currently or perhaps using a different machine such as a common CPAP?  I would assume a medical doctor would readily know the appropriate sleep therapy and be prescribed the best machine for his/her issues.   I hope your spouse's sleep apnea is being treated well.  If on CPAP now and treatment is effective, not much reason to shift to a new machine for the heck of it.    Just a random thought....

Regarding your transient weakness episodes in your arms and such, has the neurologist trialed that oral MG pill to see if you had any favorable response?

Hey Cpapman, very interesting response.  Going to post a quick chart of last night and then reply more thoughtfully to your response.

As you can see, I had more centrals last night.  Worried about why.  Doesn't this mean I'm blowing off too much CO2?  Thank God I'm getting another sleep study in lab.  And I still feel absolutely wretched.

Hopefully someone can help me figure this out.  Sleeprider can you weigh in?  

Morg

[cmpman1974]

Nobody can truly tell you if you're 'blowing out more CO2' based on an OSCAR chart as we already indicated.  Accurate overnight capnometer is the only accurate method if your medical team feels it's necessary.  Your AHI is in the 3 range so still considered successful therapy based on stats alone. It also would be possible to get an ABG test upon wakening to test PACO2 and PAO2, but I doubt any physician is running it based on your pretty much normal stats.

OSCAR is very useful and interesting, but I get the impression you feel it explains every aspect of one's health.   It's far from it. It's just one of many tools to lead someone to look into an issue further or validate a pressure level/type of PAP therapy may be working decently.  That's it.

That is good you're getting a refreshed sleep titration study. I would be sure to ask the doctor to address your concerns such as CO2 retention, CAs, etc. Be armed with a list of questions/issues before going in.

[Morgannon]

Nobody can truly tell you if you're 'blowing out more CO2' based on an OSCAR chart as we already indicated.  Accurate overnight capnometer is the only accurate method if your medical team feels it's necessary.  Your AHI is in the 3 range so still considered successful therapy based on stats alone.  It also would be possible to get an ABG test upon wakening to test PACO2 and PAO2, but I doubt any physician is running it based on your pretty much normal stats.

OSCAR is very useful and interesting, but I get the impression you feel it explains every aspect of one's health.   It's far from it. It's just one of many tools to lead someone to look into an issue further or validate a pressure level/type of PAP therapy may be working decently.  That's it.

That is good you're getting a refreshed sleep titration study.  I would be sure to ask the doctor to address your concerns such as CO2 retention, CAs, etc.   Be armed with a list of questions/issues before going in

Thanks mate!  I do understand there's no way to obtain CO2 and O2 from OSCAR.  I wear a Wellue Ring all night for the O2 levels.  The capnoemeter is currently going to have to be recalibrated because _everyone_ is blowing out too much CO2.  Those cannulas get blocked really easily and I need to get more supplies.

What's dragging me down - literally - is my extreme fatigue every time I get off of the BIPAP.  I literally think it's making my health worse, even though it's supposedly treating my apneas.  

My most recent sleep study showed almost no obstructive events, but many hypopneas.  That is a sign of weak breathing from literally everything I read on the subject of neuromuscular disorders.  I am obese, but not morbidly so.  My BMI is 35 if I recall correctly.  I'm in the process of losing weight, which I think is helping.  

If I can find another copy of the study I will post it and redact my personal information.  But I know for a fact that there is something going on with me neurologically.  The fact that my two year ago sleep study in lab showed complex apnea BEFORE treatment should have been enough for my current neuro to do something about it.

[Morgannon]

Another night.  Great on paper, but I'm a zombie.  My sleep doctor recommeded I use supplemental oxygen at night if I wanted to.  I'm thinking about not using it tonight and see if I feel any better.  Can too much oxygen cause fatigue and brain fog?

[cmpman1974]

Another night.  Great on paper, but I'm a zombie.  My sleep doctor recommeded I use supplemental oxygen at night if I wanted to.  I'm thinking about not using it tonight and see if I feel any better.  Can too much oxygen cause fatigue and brain fog?

So you have a doctor that is recommending supplemental O2 when you have perfectly good noctural O2 stats as well as normal daytime O2 stats?  You said before 96-97% without any additional O2 at night.  You should NOT be on O2 at all if you had normal numbers day and night as I said before. Yes, excess O2 certainly can cause issues.  I thought you were off of it. Your AHI is pretty well controlled night to night. Yes there seems to be a mix of Central Apneas and Hypopneas and such that vary, but your overall totals fall within a pretty good range per hour.

It is hard to believe a physician would recommend that if there's no verifiable proof.  I've battled endlessly and I actually do have low numbers at night!

I am not at all questioning the fact that you feel poorly and are struggling. I just don't see any doctors ever agreeable to treatments that don't make sense based on test results. That's the part that blows my mind. Doctors aren't usually willing to write scripts for any machine someone wants, supplemental O2 when you don't meet any criteria, etc.