Jakespeare65 - Therapy Help

[jakespeare65]

I'm really at a loss here - using the collar, the CPAP pillow, and suggested pressure settings, and still getting sub-optimum results. Perhaps a bit more pressure?

   

[jakespeare65]

Last night was much better - and I feel more energetic and alert, if it did take me a while to shake the AM grogginess. Still some FLs, but the CA # is very low, and total time in apnea was only 3:27. I'm experimenting with different heights for the pillow, added a bit back and seems to have improved.

   

[jakespeare65]

The FL at the beginning are due to my having the CPAP pillow backwards for the 1st part of the night. Had my head too high. Also some leakage, must have knocked the mask loose from hours 3-4. I don't feel terrible. Little groggy on awakening, but fell alert and fairly rested today. Encouraged by low CA events.
   

[jakespeare65]

Still trying to dial this in - I'm using all the stuff - collar, pillow. 

I'm still having FLs, but the limitations and clusters aren't always correlating.

I'm actually going to the Kaiser (insurance provider) sleep lab next week - should I be asking for a different device? BIPAP?

   

[jakespeare65]

Zero Centrals! This is a good report overall, but I feel quite groggy this morning.

Is this thing on?

   

[PeaceLoveAndPizza]

I think your bilevel suggestion is sound. You have done all you can do with a standard APAP and your flow limitations are not being managed sufficiently. A bilevel with more pressure support, in addition to trigger control, will help quite a bit.

You have quite a few charts that show the flow limitation issues and how pressure support of 3 is not resolving the problem. The conundrum is you need more pressure to help manage the apnoeic events, but without more pressure support it triggers other issues. I believe a bilevel is indicated.

They should hopefully agree with that assessment. If not we have some members who have successfully navigated the process and can hopefully help. 

Once you get the machine we can help set it up. Note that you can always buy one yourself and it can be quite less expensive than a new machine. I have seen Resmed Vauto machines listed on Facebook marketplace for as little as $450 with 1000 hours on it. Something to consider.

[jakespeare65]

PL&P,

Thanks for all your advice and suggestions. You've been incredibly helpful!

I will update once I've seen the Sleep Lab folks. I'm curious how up to speed the techs there are on tools like OSCAR and the like. 


Cheers!

[jakespeare65]

The saga continues...I went to Kaiser sleep lab near my house and met with a sleep tech there. Not helpful. He says "Let's look at your data," and prints out some pages from the ResMed website, which gives slightly more data than MyAir, but no breath waveforms or flow limitation data. Totally undercounting events. Just "this looks great, what do you want us to do?" Told me to set my max pressure to 20. Suggested I try a different mask from the f30i to reduce leakage. They covered that.

I reached out to my PCP, and she gave me a referral to the team that does the sleep studies. I figure a sleep study, with all the biometrics they track will show how disordered my breathing is and hopefully help me get covered for a BIPAP or other non-APAP machine. 

I have an intake call on 4/1 with the sleep medicine MD. I hope they will greenlight me for a sleep study there. 

Any suggestions on how to approach the conversation? 

Clearly the clinical community is mostly ignorant of, and/or hostile to, the therapy optimization community. They probably don't want to hear about how I did my own research on YouTube. 

I was thinking to simply emphasize how I am still tired/fatigued, having cognitive issues and never feel rested. Despite exemplary compliance. This has led me to believe my case is more complex.

Thanks,

Jake

[jakespeare65]

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