modernsportscar - Therapy Thread

[Geer1]

He was using PS of 2 up until last night, increasing to PS of 4 is already a big change and I would continue to use it for a few more nights to see if you believe it feels better.

As you mentioned best to try and make changes one at a time.

[modernsportscar]

Update: Last night, I went to Min EPAP 6 IPAP Max 12 with a PS range of 4-6 with BiFlex off (the video will show slightly different levels at times because I was having issues with burping--so I turned the pressure down several times to levels where burping has not ever been an issue and it continued, which was weird. Actually, it's less 'burping' and more air simply coming out through my mouth in regular intervals). 

For some reason, it didn't record flow data. 

What's improved: I feel noticeably better when I wake up (though still not amazing). The dark circles under my eyes are disappearing and my 02 levels are improving while sleeping.

What's gotten worse: I have a spaced-out/light-headed/wonky feeling throughout the day that started after about two weeks on BiPAP. It's almost as if the improved breathing is making me feel worse, somehow? 

And the second thing is a daily increase in variable breathing percentages. (I'd think this would explain the feeling but the feeling started several days before the wonkyness.) 

See the 60-second video here--there was one day last week it was high but over the last several days, it's gotten higher every single day. Any thoughts on what could explain this? Should I stop using my machine? Thanks for any thoughts.

[modernsportscar]

Is it possible to feel worse even as other symptoms and data are improving? For example, is it possible that after being extremely tired and not sleeping well for more than a decade, now that I am improving in my breathing and sleep, it is causing some sorts of issues elsewhere? Or that the brain can feel ‘wonky’ or spaced out *because* of proper breathing while sleeping?

I have a separate thread on the details of my situation but it’s really confusing me that 4 weeks into my treatment, the dark circles under my eyes have disappeared and I wake up feeling ~30% better but am constantly spaced out, worse brain fog, and intermittent myoclonus. 

I also know it’s possible that I am addressing the breathing issue and just happened to have developed another issue entirely unrelated but that seems less likely, IMHO. So, I was hoping to hear of a transition phase of some kind that rather than immediately feeling better, only some symptoms resolve initially and maybe others arise as your body/brain adjust.

I have a doctor’s appointment tomorrow, for the record, and will ask about seeing a neurologist. 

Details: 47 years of age, athletic/run two miles a day, no drugs or smoking. History of chronic depression with occasional bouts of anxiety. Classic ‘UARS’ build: thin, extremely narrow and high pallet, small throat, head forward, natural mouth breather, etc. 

I do daily myofacial exercises and started BiPAP about a month ago on a Dreamstation but will be moving to a ResMed soon.

[Crimson Nape]

First, since this post and your other thread are all about your therapy, I have merged them together. I have rename the thread, "modernsportscar - Therapy Thread"

To answer your question above, you can have excellent numbers and have disrupted sleep. The numbers are based on your breathing patterns. If you are awakened or toss a lot, then your sleep will not be refreshing.

[modernsportscar]

Thanks for the response. My issue is that 02 levels are improving, sleep is slightly more restorative, and the dark circles are almost completely gone from under my eyes for the first time in a decade. However, my brain is *not* right: spaced out, heavier than ever brain fog, and myoclonus.

Clearly, the therapy is helping markedly but it also appears to be negatively affecting me as well. So, I was curious/hopeful there was some kind of phase where you emerge from a decade of bad sleep toward restful sleep and my heavy brain fog, spaced-out wonkyness might be ‘normal.’ (Considering the myoclonus, I doubt it.)

I’m likely going to try a few nights without therapy to see if gets better. Or worse.

Side note: I have a prescription for CPAP but not BiPAP. How are people able to purchase these machines without a script? How are people able to get a script for ASV, for example? I’m guessing this comes off as asking how to break the law, so if this isn’t appropriate to ask, I can delete the question.

[SarcasticDave94]

ASV is a highly specialized BPAP that includes a breath backup rate and a control algorithm designed to combat Central Apnea. There can be a few other reasons for ASV, but what I'm hearing from your Apnea issues doesn't likely line up with the need for ASV levels of therapy. I could have missed something but what I've seen thus far indicates VAuto will be the better match.

As for getting the script, for most machines it'll be down to discussing with the doc about your symptoms and complaints then seeing what machine matches what your dealing with. Especially for higher level machines, a new Titration may be needed with that therapy tested out to create results to justify the change.

[Geer1]

I think you should try higher pressure to see if that has any effect on how you feel and also on the variable breathing which seems like it might be related to some obstruction. I would increase min EPAP to 9 cm. If sticking with 4 PS you would have to increase max IPAP to say 15 cm.

[modernsportscar]

Thanks for the feedback and ideas. I was looking at ASV based on some of the research I’ve seen but am not sure between it and the VAuto at the moment. It would be cheaper and I could always resell the latter if it didn’t work out.

For the next few days, I don’t plan on using therapy because of the symptoms I described above. I didn’t use it last night and they’re 70% better today. However, history shows my sleep is clearly non-restorative so I can’t just abandon the idea altogether—especially since some of the data points (dark circles gone, higher 02 levels while sleeping) were positive.

No therapy for a few days should help me deduce more and decide what my next steps should be—either discontinuing therapy or going with a new machine.

A third option could be higher pressure but the most recent night, for the first time since I restarted therapy 5 weeks ago, I had the air-coming-out-of-mouth-in-little-intermittent-puffs thing. (This happened to me when I first attempted therapy in 2017 and is why I discontinued then.)

[Geer1]

Imo ASV is only helpful in very rare UARS cases, most of the cases that I have seen fail APAP and bilevel also failed ASV. The only ones that didn't fail were ones that had a central apnea aspect which you do not appear to have.

The idea of ASV for treating UARS is interesting in theory but the Resmed versions aggressiveness and lack of timing controls makes it fail in too many cases. ASV is an aggressive treatment meant to treat central apnea (ie force you to breath when your body doesn't want to), it isn't designed to fine tune minor flow restrictions and its aggressiveness does not play well with people that have overactive nervous systems (common if not the cause of some UARS cases).

Frankly I think just getting a Resmed machine will be an improvement for you. These PR machines have poor responsiveness (hence the flatline of pressure in your data) and an uncomfortable waveform (speaking from others experience, the consensus is Resmed easybreathe waveform and EPR system is far more comfortable). A basic APAP machine would likely be an improvement over your current machine and a VAUTO is the best bilevel available unless you need to treat central apnea, COPD, neuromuscular disorders etc.

[modernsportscar]

Then ResMed 10 VAuto will be my next step (again, based on how I feel the next few days). I will report back with more info/data then and can’t say how much I appreciate the support, thinking, and perspectives here. Hugely helpful. Thank you.