UARS/OSA newbie

[Mossy]

Have you tried eating something? You might be waking up if you're hungry. Maybe look into CBT-I to help. I'm a newly discovered UARS patient and really struggling with CPAP. I just can't fall asleep on it. How did you end up being able to sleep?

[slowriter]

I just tried basic sleep hygiene practices + the 5-HTP and GABA amino acids I mentioned earlier. I think it was mostly getting more used to the mask, etc. though.

But I'm still unsure what's actually causing the remaining, if much less frequent, awakenings.

While it could be psychological, I'm skeptical; seems more likely something to do with pressure not being dialed in (which it's not).

I actually had the most objectively ideal sleep on Friday, in the sense that I did not (knowingly) awake for an entire 8+ hours, and the data from the machine looks fairly good. But I felt terrible all day.

Will be talking to my sleep specialist's office tomorrow. They didn't actually do a titration study (their practice is to do only do those split studies when one obviously has sleep apnea), so maybe time to ask for that.

[slowriter]

BTW, suffice to say, it will take some time to adjust. First few days were pretty bad, and things slowly but steadily got better over the next couple of weeks.

[slowriter]

A few developments, by way of update, and for the record.

First, experiments I made with the settings, per recommendations in this thread, didn't have any positive impact on my daytime outcomes. I got as high as 11, without improvement.

Second, I got a great deal on a practically new Aircurve 10 VAuto, which I've been using for the past week. I figured this will give me more treatment flexibility, particularly with PS, without being dependent on the insurance company.

I am now waking less (as in, most nights now I don't wake up at all until morning) with additional PS (4 ATM).

Third, and related, the follow-up appointment with my sleep doc agreed to prescribe an in-lab titration study, with a priority placed on eliminating RERAs, and also checking on efficacy of bilevel (this was before I got the VAuto).

So I brought this information, including an OSCAR report, to the tech that was doing my titration, and talked through my concerns with her (mostly reminding her I had UARS, and that my priority was the RERAs).

Result of titration:

EPAP - 6
IPAP -12

I believe that should provide justification for the bilevel.

I was a little worried about increased centrals from the higher PS, but have concluded I'm not worrying about them for now (largely because what the machine has reported is almost exclusively during sleep-wake transitions).

[slowriter]

Oh, BTW, in my original post, I said I was feeling pretty good. That turned out to be temporary, hence the subsequent story.

[slowriter]

I was a little worried about increased centrals from the higher PS, but have concluded I'm not worrying about them for now (largely because what the machine has reported is almost exclusively during sleep-wake transitions).

Interestingly, these machine-reported, mostly phantom, CAs largely went away when I switched to the Bleep mask.

[slowriter]

I have an insurance and DME question only tangentially related to this thread. Should it go somewhere else?

Anyway, the deal:

Per above, I bought a gently used VAuto, as I was waiting on sleep lab, insurance, etc. Was cheap enough that it was worth it just to have an insurance policy (no pun actually intended) should I have problems getting a bilevel.

My sleep lab has no problem with that.

But when they returned my rental autoset and told my DME that I still wanted to continue with the supplies through them, they replied insurance companies usually won't do that, since compliance can't be confirmed.

Well, my response is I can give them the serial number and machine code, and they load it in my profile. Problem solved.

They just don't want to because they lose out on that revenue source.

I initially thought to pause on the new machine since the one I have is the same model, and only has like 300 hours, and then wait until Resmed releases new machines.

I will call my insurance company later to hear what they have to say, but any thoughts or tips?

I see a few options:

1. just get the new machine, and stay with the DME
2. push them to do the compliance confirmation with my current machine (not bought by them), and explain I will get the new machine through them when it's released, and I will continue to get supplies through them
3. ditch the DME entirely, and use my prescription for a new machine later, when I want/need it

Update: apparently, DME claims they have to pay some modem fee to Resmed, and supplies need to be tied to an HCPCS code for a machine.

I definitely don't buy the first point, since my few years old new machine is still reporting to Resmed, once I gave them the serial and code numbers.

[Pugsy]

What a load of crap.

My insurance has never, ever paid for a machine for me in over 10 years and I still use my insurance for whatever masks and/or supplies I might need.

A doctor (any doctor), simply saying a person is still using cpap and it is working, is good enough for most insurance companies that require proof of an ongoing compliance usage thing (it might be yearly reporting depending on insurance.)

AND proof of compliance is on the SD card if the lazy ass DME would just use it. Doesn't have to be the web thing they they pay for for everybody anyway.
They don't want your business.
I would find a new DME for any future machines or supplies that you might need.

[slowriter]

What I figured. Thanks Pugsy.

As an alternative, I was considering Nationwide Medical, since a) they have the Bleep system I would like to primarily use (my current one doesn't, and doesn't appear interested in getting it), and b) they're in-network for me.

Any thoughts or knowledge on that?

[slowriter]

As an alternative, I was considering Nationwide Medical, since a) they have the Bleep system I would like to primarily use (my current one doesn't, and doesn't appear interested in getting it), and b) they're in-network for me.

Any thoughts or knowledge on that?

Hmm ... online reviews look pretty bad!

[Pugsy]

By all means....give Nationwide a call.
I wasn't able to use them for the Bleep because they are out of network for my insurance (medicare advantage plan) but there's a good chance that will change this fall once open enrollment opens up again. They at least tried to work with me and they didn't care that I wasn't in the market for any machine at this time.
Use the phone number that I posted in the thread though...don't have it handy at the moment...but don't try going through the main website...will take forever.
There is a special number to an employee named Greg and he can handle everything.

As to the online reviews...unhappy people are always more vocal and the few people who are getting the Bleep from them now have been happy.
Otherwise I can't make any promises.
Nothing is set in stone...people can always change again.

[tsduke]

But when they returned my rental autoset and told my DME that I still wanted to continue with the supplies through them, they replied insurance companies usually won't do that, since compliance can't be confirmed.

I just ran into this today. If I want to continue to have headgear related items and hoses, etc covered I have to first complete the 10 month rent to own of the machine that went through insurance. After that I'm free to to buy any machine I want and continure gear coverage. I'm guessing this is a new thing for those who have been on treatment for several years and not run into this.

[Pugsy]

I'm guessing this is a new thing for those who have been on treatment for several years and not run into this.

I am guessing it's the DME lying through their teeth.

Get it straight from the horses mouth...the insurance company...and in writing.

Never, never, never, ever believe anything that comes out of the DMEs mouth without verifying it yourself with your insurance company..

[slowriter]

I'm guessing this is a new thing for those who have been on treatment for several years and not run into this.

I am guessing it's the DME lying through their teeth.

Get it straight from the horses mouth...the insurance company...and in writing.

Never, never, never, ever believe anything that comes out of the DMEs mouth without verifying it yourself with your insurance company..

I was planning to call the insurance company this afternoon.

How do we "get it in writing"?

Ask them to send email confirming the call details?

Something else?

[Pugsy]

The get in in writing part really probably isn't needed but the bitch in me would march right down to the "former" DME and wave it in front of their faces.

You can simply ask for written confirmation of any discussion you have with the ins co rep. They tape everything anyway.