[Diagnosis] Very high amounts of periodic breathing / CSR ?

[gregbe2000]

Hi HenryECole81. Thank you very much for the info! I'm glad you wound up with a solution that usually gives you good sleep. I have several questions on your experience and hope you don't mind me asking a few. Some of the questions I think you've answered in your description and I just want to confirm my understanding.
1) You developed aFlutter and AFIB over time. Was this deemed not to be caused or worsened by your low heart rate (and aging, NDAIDs, and OSA as the suspects)? My Dad had the same low heart rate as me (so does my son). My dad's heart rate dropped suddenly and he felt faint when he was in his early 80s. He ended up getting a pacemaker and that issue didn't come up again. He eventually passed away but it was nothing to do with his heart.
2) Was your AFIB and aFlutter something that became permanent where you needed the cardioversion to get back to a normal rhythm, or did it fade in and out of normal rhythm before the cardioversion? Since your AFIB remains, I assume the cardioversion was deemed to only work temporarily and not worth doing again?
3) You mentioned that your better sleep has been correlated to the pacemaker. Was it a dramatic change once you had the pacemaker? Do you have a theory on why the pacemaker made your apnea better?
4) Is your issue with CPAP alone that you could not find a pressure that would keep your throat clear, or that the pressure that is required to eliminate OSAs ends up causing CAs and CSR? I've gotten plenty of CAs when I tried a static pressure of 5.4cm. If it is just the CPAP causing this then maybe I need to try a mandibular device. My diagnostic sleep study in 2020 had a 2.9 index for CA. The sleep studies 20 years ago didn't have any.
5) Do you not have any CAs/CSR if you just use the mandibular device alone? Did you have a sleep study to prove the effectiveness?
6) I've been watching a video of my sleep (super exciting) and correlating that to my OSCAR flow data and it sure seems like the majority of my CAs have movement before them - or the movement kicks off a series of them. My CSRs are often near the end of the night right before I wake up and at times where I think I'm transitioning between being awake and asleep. Seems similar to you.
7) How old were you when you started to experience sleeping issues? I've had issues since I was 18 and I just figured it was normal then. It wasn't until I was 38 that I had a sleep study and they told me I had OSA and insomnia.
8) Last question - was having low O2 in your blood ever an issue? The titration sleep study I did last week had me at <88% for 3.2 minutes. I wear a garmin watch with Pulse Oximeter readings every minute and that's been giving me lows of 79-82% every so often. I know, not a medical device.

[Phaleronic]

Hey Greg:

That's quite a bit of info to process, and seeing as we are not doctors and this isn't a forum for medical advice I'd ask to please get your sleep hygiene in check, try to sleep on your sides as much as possible and not on your back (supine). Your latest test with O2 desaturation wasn't terrible but it's not great, if you need bi-level therapy we can get you setup.

You likely needed much more pressure than 5.4cm of water, so we'll need to circle back on that one. How are you feeling now?

[gregbe2000]

Hi Gregbe2000. Follow up on our previous exchange. We have some similarities. -- Very competitive swimmer but much older -- 80ish.  I have ( had) a very low heart rate for forever. 35-40 bpm resting, 30 at night. No concern for cardiologists. But evolution from that  may be useful to you, at least for later on. Please ignore the rest  of this paragraph  in not relevant:   In the last several years, my low heart rate began showing as  asymptomatic  Aflutter and AFIB,  and my heart rates dropped even further with occasional night  reading of 12 and 24 bpm and awake resting 32!!). At same time, tests showed that my heart rate was not accelerating as well as  it should from rest to higher exercise level rates. Eventually  I had  proactive treatment for AFIB/ heart rate -- cardioversion, ablation(failed) and finally pacemaker (the new, wireless version, great)). The pacemaker  settled my resting HR to 60 and allowed the rate to rise with exercise to 140 bpm when exertion and  rate to rise above by itself in competition  or workouts  to 160+. AFIB remains, but still mostly asymptomatic. Note that OSCAR reports that my Apnea events were much better controlled with pacemaker, with 5 out of 7 nights with considerable quality, though still some nights with CAs and some occasional CSRs.    Aside: The shift from low heart rate to AFIB can partially be ascribed to aging, but do give possible attention for AFIB impacts from long term, high use of NSAIDs for aches and pains.
 
CPAP and Apnea history:  Lab sleep test and pulmonologist  prescribed and guided  CPAP for Apnea  2009 -2015; then pulmonologist  tests said too mild for CPAP but try mandibular device – so so results, but of course not quantitatively recorded since no CPAP. Later 2019 lab  tests  said Apnea again and CPAP . Most of past  CPAP use history has been a struggle of equipment and awakening, with lots of Apneas adn HAs, The latest CPAP 2019 -2021 prescription  had lots of CA and use was called to Stop  by pulmonologist as the CPAP device aggravating Apnea after many trials and also since pulmonologist sleep  test showed I was doing better with mandibular alone. That was not satisfactory for me, particularly with identified link of apnea to AFIB  even if asymptomatic. I played around with AirSense 11 on CPAP mode and found that I could keep my throat fully clear using mandibular device comfortably in my mouth withing  CPAP mask  with pressures around 12. Since I sleep on my back due to a shoulder rotator cuff, I added a cervical collar to keep my chin up and throat clear. and open.  Voila, sorta. I still can have  CAs and some occasional CSR events, but definitely get six or so hours of  self-sensed  clear sleep as mostly validated by  OSCAR readings over a usual 8-hour night.  I ascribe most  CAs to pre  and post awakening events and anxiety laden partial sleep hour(s)  after middle of night awakenings  usually due to need to pee - BPH) Since some  CSRs show up,  cardiologists have done extra ECHOS including particularly ejection fractions, plus required EKGs for AFIB which have real but very different look with pacemaker. No sign of heart physiology or electrical causes for CSRs. They and pulmonologist ascribe CSRs to CPAP use, OSCAR interpretations, and itself and mental state at awake or near sleep. Cardiologists are having me take a Max Heart Rate Stress Test to make sure the heart rate acceleration and the  high above average max rates are ok with the rest of heart systems.
Hope this helps some. HEC

gregbe2000, I'm glad to hear about the cardio testing you're having done and about the CBT-I, which I really hope will help you.  I agree that a couple of those CAs look like post-arousal CAs, though I'm not sure I see that in every case.

Spontaneous arousals are a bear.  I hope the upcoming sleep test will help you figure out how many of your arousals are spontaneous and how many are respiratory-effort-related.

I do just want to return to the possibility of your getting a recording oximeter compatible with Oscar.  Your O2 levels, especially during the periods when you have a lot of CAs or Hs, could be a significant factor in how you and your doctors want to proceed.

Thanks Dormeo.  I started wearing my garmin watch to bed and using it's pulse oximeter which reads every minute at night.  I know it's not a medical device but it's what I have.  It will show me the minutes that are low and I correlate that to OSCAR and the video of me sleeping...I've had lows of 79% and 81% on several of the nights but I couldn't correlate them to an apnea event in OSCAR - and all the times are synched.  My diagnostics sleep study is scheduled but it's two months out - hopefully sooner if someone cancels.  I'd hope that will answer if O2 deprivation is a problem.

[Phaleronic]

Hey Greg, your O2 desats are correlated to your low minimum pressure setting of 5.4cm. Please raise that ASAP.

[gregbe2000]

Hey Greg:

That's quite a bit of info to process, and seeing as we are not doctors and this isn't a forum for medical advice I'd ask to please get your sleep hygiene in check, try to sleep on your sides as much as possible and not on your back (supine).  Your latest test with O2 desaturation wasn't terrible but it's not great, if you need bi-level therapy we can get you setup.

You likely needed much more pressure than 5.4cm of water, so we'll need to circle back on that one.  How are you feeling now?

Hi Phaleronic -

Yes, but super valuable info due to the some similarities between me and HenryCole81.  I'm only asking his experience, not medical advice.  I think my overall sleep hygiene is pretty good - I've been working on it for 30 years  I've only been sleeping on my side the last couple of weeks (have a vest with a ball in the back).  Yeah, 5.4cm is likely too low  - but I'm trying to see if my CAs/CSR will go away with lower pressure.  I have a diary of small changes and I'm on 4-8 with EPR off for the last few days.  I've talked to my sleep doctor after my titration study and he thinks it's premature for a BiPaP or ASV.  There is definitely a component, I think a very large one, of my poor sleep being driven by constant arousals between sleep and wakefulness and those triggering some (maybe most) of my central apneas.  I'm frankly scared of an ASV at this point.  As I learn more about it I guess my concern is getting on a machine that's doing the breathing for me and what long term implications this has (and what if you develop heart issues later and need to be removed from it).  Maybe this will be the best/only answer for a good night's sleep - but I want to exhaust all other options first - especially when I don't know what's triggering my constant arousals.

[Phaleronic]

Hi Phaleronic -

Yes, but super valuable info due to the some similarities between me and HenryCole81.  I'm only asking his experience, not medical advice.  I think my overall sleep hygiene is pretty good - I've been working on it for 30 years  I've only been sleeping on my side the last couple of weeks (have a vest with a ball in the back).  Yeah, 5.4cm is likely too low  - but I'm trying to see if my CAs/CSR will go away with lower pressure.  I have a diary of small changes and I'm on 4-8 with EPR off for the last few days.  I've talked to my sleep doctor after my titration study and he thinks it's premature for a BiPaP or ASV.  There is definitely a component, I think a very large one, of my poor sleep being driven by constant arousals between sleep and wakefulness and those triggering some (maybe most) of my central apneas.  I'm frankly scared of an ASV at this point.  As I learn more about it I guess my concern is getting on a machine that's doing the breathing for me and what long term implications this has (and what if you develop heart issues later and need to be removed from it).  Maybe this will be the best/only answer for a good night's sleep - but I want to exhaust all other options first - especially when I don't know what's triggering my constant arousals.

Arousals and microarousals are nearly all based on inappropriate pressure and you're on that right now my man.  You're doing well sleeping on your back but if the pressure is too low (or too high) or if you're using too much pressure support then you're going to have issues with sleeping, and also the machine.  There are folks here that have tried most of the machines and modes and titrated on them as well.   Exhausting all options is to try another vendor (I did the same thing).

[gregbe2000]

Hey Greg, your O2 desats are correlated to your low minimum pressure setting of 5.4cm.  Please raise that ASAP.

Thanks Phaleronic.  I'm trying out 4-7cm now.  My lowest of 79% (garmin watch) was when I was on APAP of 4-7 and sleeping on side.  My therapy over the last 4 years has been APAP 5-15 (I didn't know OSCAR existed before 2 weeks ago).  Looking at the stats, my average pressure over the last year has been 5.9cm while being under 7.24cm 95% of the time.  This has kept me OA index at 0.29 and my H index at 0.76.  The problem is that my CA index during this time is 7.  My theory is that my O2 desat has a higher chance of being associated with a CA than an obstructive apnea that more pressure can make go away.  Am I making sense?  I assume more pressure = more CA's, but not sure that's the case with me.

[gregbe2000]

Arousals and microarousals are nearly all based on inappropriate pressure and you're on that right now my man.  You're doing well sleeping on your back but if the pressure is too low (or too high) or if you're using too much pressure support then you're going to have issues with sleeping, and also the machine.  There are folks here that have tried most of the machines and modes and titrated on them as well.   Exhausting all options is to try another vendor (I did the same thing).

What do you suggest?  I'm on 4-8cm right now and over the last 4 years my CPAP could have gone up to 15cm but I've been below 7cm 95% of the time.  The only way the machine is going to give me more than 8cm is for me to force it at a higher static pressure.  I could do that, but that would seem odd.

I can understand the vendor differences in BiPAPs and definitely for ASVs due to the algorithms.  What was the difference you found between different vendors of a CPAP/APAP?

[gregbe2000]

I had a much better night for me which gives me some hope.  After 3 nights trying 4-8cm, EPR off, and having variable not so good results (horrible results relative to most of the charts I see others post), I tried a static pressure of 7cm with EPR of 1cm.  I feel better than I have in the last couple of weeks and even my garmin watch has given me my highest sleep score of 85 (about 25 pts higher than normal, for whatever that's worth).  My lowest O2 was 84% on my watch but it came at at time that my respiration was completely normal - so discounting it.  I have a lot of interruptions during the night which can be seen by a change in breathing that I then correlate to movement - usually repositioning in bed.   Most of my CAs have some movement first, then the CA (same with the 3 OAs this night).  It seems that the CSR flagged data, or any series of CAs is usually kicked off by movement.  While I consistently get CAs and usually CSR flagged in my last 4 year of data, my hypothesis is that it is mostly due to arousals/movement and then I get into this loop that is flagged CSR (but not really CSR).  I don't know why I often have the waxing and waning respiration (I don't when I'm sleeping soundly).  Given this, my gut is that a BiPAP or ASV is not the answer, as the root of my issue is the movement/arousals that are kicking off the apnea events.  I don't know how to get at this beyond trying different pressures/settings and taking CBT-I (just started this).  I'm not experienced at all in this, so hoping for some confirmation and guidance given the charts below.  One chart is for the full night, one chart shows a typical arousal before the CA, and one chart shows uneven respiration/movement at the beginning of a flagged CSR.  Thanks for any help, I really appreciate it!

   

   

   

[Jay51]

Just curious, did your sleep study show a lot of PLM's (Periodic Limb Movements)?  PLM's can cause significant arousals.