BiPAP Dreamstation pressure drops

[Sleeprider]

This makes somewhat more sense, but I'd still rather see a ST-A prescribed. This is basically bilevel with pressure support at 6.0. We could have done that with the Vauto and had Easybreathe. Put me down as unimpressed.

[PhoebeAnn]

Agreed, but I think I'm dealing with a boat that doesn't want to be rocked.

And, a bit off-topic, but perhaps of interest to you: last night I started out with an F20 Air Cushion mask, which I was about ready to commit to, but it leaked badly at about 2:30 - enough to wake up both me and my wife. I fiddled with the straps and it settled down. But finally, at about 4:30, it got bad again,and I had a lot of trouble adjusting the lower straps - the Velcro closure is way back around the neck and the soft cervical collar is in the way. In disgust, I tore off the collar, tightened up the straps, and went back to sleep. For the next hour and a half or so, I slept great. but my AHI went sky-high. Maybe there is something to the collar theory...
   

[SarcasticDave94]

I have found that I have to rock boats or I don't get medical devices. I've proved it multiple times, with the ASV, the hospital bed/air mattress combo, the spinal cord stimulant implant for chronic severe back pain, and a power base rehab wheelchair. I brought my complaint out for each need, worked with the PCP and specialists to prove medical necessity, and self-advocated until I got what I needed through insurance paying 100% since I was for 5.5 years a zero income disabled guy, and now I'm getting things done via Medicare.

Rocking the boat with respect and reasonable knowledge of your medical goal, and taking a firm stance, will get you what you need.

[PhoebeAnn]

Thanks -- I think you're right. I just had my first boat-rocking experience with Medicare, who declined to pay for EMT transport a couple months ago. Appeal in progress. ALS is funny -- it opens lots off doors, but slams others in your face. I think the key is to choose your boats carefully.

[SarcasticDave94]

Agreed. Best to your success.

Maybe we should get approved for life vests before too much longer.

[PhoebeAnn]

Regarding the issue of the ST, they probably think ST is an upgrade over a VAuto. At one time maybe that was true. I'm thinking though that you're probably needing something with an actual backup rate, which I don't think even the ST has. ST-A or ASV may be a better choice, but certainly ST is not doing you any good IMO.

Just found ResMed's titration guide and xPAP recommendations. They specifically call out the ST as a preferred machine for neuromuscular disease, so I guess that's why my ALS team picked that.

Still working on finding a mask. Basic problem, Fred notwithstanding, is my beard. When I follow all the fitting guidelines, I have to mash the mask down pretty hard to make the ST happy, and then I'm not happy - the F20 hurts the bridge area of my nose, and the F30 hurts the other end, and the lower edge of the F30 is usually in my mouth in the morning - but still sealing. I may be better off just mastering the tongue trick and going back to the P10. The Amara View looks promising, but I can't manage the clips.

And, finally, to keep on thread topic, as I was waking up this morning, breathing was very hard, and I was sure the machine was off. But by the time I had struggled into a sitting position, it was working fine. But, 48% Large Leaks overnight (F20 AirCushion, previously my best mask), and SPO2 at 92% (very low for me) in the morning.