Granny7 - Newly Diagnosed- Looking for Help

[Granny7]

Here is my chart from last night. It’s one step forward, one step back.  Ignore the first 21/2 hours. I was sitting in a chair watching a movie. I was awake from about 12:20 to 1:40 as we were having trouble getting the Vitera mask adjusted. We finally got it to the point where I felt no leaks and it was comfortable. The changes from the previous night, which looked great, were the vitera mask instead of the airtouch f20, I slept in the inclined position, and I didn’t wear the cervical collar. It looks like the inclined position may be causing the flow limitations. I’m damned if I do or damned if I don’t with respect to position. If I lie flat my GERD is a lot worse but if inclined the flow limits seem to be a big problem. The mask was not leaking before I fell asleep but my in house “expert” showed me that the leaks went up as the pressure increased. They finally woke me up. It was like a fart symphony.  My “expert” thinks a higher minimum pressure may reduce the flow limitations but feels he’s a little over his head. We mentioned I might need a BIPAP to the RT at the DME and she said I would need a sleep lab titration to determine that. Is that true? Melman thinks the data from my machine is sufficient.


Sorry to be bringing up more issues.and really appreciate any more advice you can give

[Sleeprider]

This looks to be a bit of a setback, but your trend is moving the right direction. We can clearly see where you went inclined and fell asleep without the collar. It's okay, and you will decide what works and feels best for you. I'm pretty sure you will do better with bilevel, but a titration test is designed to demonstrate CPAP is sufficient. Your comfort and flow limits are not really something a clinical titration evaluates. In the absence of a medical condition like restrictive thoracic disorder, COPD, or central or complex apnea, it is very difficult to meet the Medicare/ CMS criteria that bilevel therapy is medically necessary. It can be done based on an intolerance or unsuccessful CPAP trial, but you are between marginally effective on bad days and excellent on good days in that regard. We know what it takes to get excellent CPAP therapy in your case, but we need to find a way for that to work with your GERD and other comfort issues. If we get to the point where bilevel appears to be the best solution, it may be easier to acquire your first machine out-of-pocket to demonstrate the benefits to your doctor. That is what I and many others here have done. The tough lesson here is that insurance and Medicare are designed to get you the minimum, medically necessary, and least expensive device needed to meet their criteria for AHI, and those of us with higher criteria, are often on our own. That was not a problem until machines came in to short supply due to the Philips Respironics recall this year, and my last standby machine only cost $175.

I encourage you to make the most of the very good machine you already have, and if the opportunity presents itself to upgrade to a Vauto, then by all means do that. Working with a supplier suggesting a clinical titration is likely an expensive dead-end. Your expert is suggesting higher pressure, but I think it's all positional, and the solution is going to be a blend of accommodating your needs to incline and keeping your chin from tucking.

[Granny7]

Thanks for the advice RE titration for bilevel. I’ve skipped a few nights due to skin irritation from the mask but believe I am making progress. So much on the 29th it’s hard to believe it’s real. The only difference is that I wore the soft cervical collar the last two nights at the insistence of my resident sadist. (To be fair, he wore it for several nights to soften it up and it is more comfortable.) On the 28th I watched TV with the mask for a few hrs to reaccustom myself. On the 29th I didn’t and had results that are hard to believe. Hope I haven’t jinxed myself. Unfortunately I will need to use a different mask tonight so the irritation from the F30i can heal. The F&P Vitera has different pressure points. After 2-3 nights it will get the bridge of my nose. If my skin doesn’t toughen up I’ll be alternating masks forever.

We’ve already discussed looking for a used bilevel but hoping last night wasn’t an outlier.

[Sleeprider]

I hope that felt as good as it looks. The resident sadist would be proud. That's excellent!

[Granny7]

I did feel more rested so that's good. I can't say it felt good. My nerd tells me CPAP was invented by an Australian doctor but I suspect it came from the lab of Josef Mengele. Comfortable, it is not. Hopefully I will adapt as well as my nerd has. He says he's barely aware of the mask and pressure and sometimes, when he wakes up at night, he has to feel to make sure he's wearing the mask and stick he finger under the edge of the cushion to make sure the machine is running.

Last night was not as good with respect to flow limitations but my AHI was only 0.79. I had to take the Vitera mask off after 5hours because it hurt my face. I have more masks to try. When I went to Lincare for my one free mask exchange because the  F30i was irritating my face the RT had me try 4 different masks. I chose the Vitera but she let me take the other 3 to try at home. My hubby's airfit F20 looks like a good fit for me so I have plenty of alternatives to try yet. Sorry, I'm rambling. Thanks again for your help and encouragement

[Sleeprider]

The F20 blows air in a lot of people's eyes and can cause irritation on the bridge of the nose. Just be aware it may not be as good as it looks. Your experimentation with different masks will eventually lead to the best one. Hopefully you find some magic in the choices.

The nerd was right about the Aussie Dr. Collin Sullivan, and the original CPAPs were named for him "Sullivan". Mengele was hiding out in Brazil long before that ever happened in 1980. The gold standard for treatment of severe obstructive sleep apnea before positive pressure was tracheotomy, so in that light, the CPAP looks less tortuous.

[Granny7]

I thought you would be rid of me but it looks like I did jinx myself by posting data for the 29th. It’s been downhill from there with respect to flow limitations and RERAS but AHI values have been good. The only thing different is change from the F30i to Vitera mask for 3 nights (30th, 31st, and 1st ) and then the F30i again on the 2nd. I slept with my upper body inclined, wore the collar, and kept the same pressure settings. (One change; on the 1st I used a REMzzzs mask liner with the Vitera because it makes farting noises with almost any leaks. The liner cured that.)Yet my flow limitations got progressively worse. I’ve attached the chart from 12/29 (F30i) for reference, two using the Vitera, and last night using the F30i. My in in house “expert” suggested I consult you guys again. So if your getting sick of me, blame him. Can any of you see anything in the data that explains the change? We’re thinking of following Gideon’s earlier suggestion of increasing the minimum pressure to 11. Thoughts?


Sleeprider, thanks for your comments on the F20. It’s what my masked partner uses and he says it’s the only one of 4 or 5 he’s tried that doesn’t irritate the bridge of his nose or blow air in his eyes. All the reviews I found of the Vitera praise it’s comfort and sealing but mine irritates the bridge of my nose badly and plays fart symphonies without the liner. It’s obvious finding the right mask is an individual quest.

Whoops, need to put last chart in next post

[Granny7]

Last chart

[Sleeprider]

Thinking of your soft cervical collar, does it exert any pressure on the soft tissues behind the jaw? There is a strong trend to increasing flow limitation and higher pressure. Are you tolerating that pressure, or do you need some relief? Do the increases on flow limits by any chance correspond to increasing sleep angle?

[Granny7]

Thinking of your soft cervical collar, does it exert any pressure on the soft tissues behind the jaw?  A little but not much. There is a strong trend to increasing flow limitation and higher pressure. Air pressure or collar pressure? (I assume collar pressure). Are you tolerating that pressure, or do you need some relief?
I'm comfortable with both the collar and the air pressure.   Do the increases on flow limits by any chance correspond to increasing sleep angle? No., sleep angle was the same for all the nights I just posted.

I did sleep flat on 12/21 without a collar and flow limits were low. The problem is that my GERD is much worse sleeping flat.

Mel just tried his collar and says it applies slight pressure to the soft tissue but his flow limits are always very low. It seems that a soft collar fitted to keep the chin up would naturally exert some pressure on the soft tissue.