How do I get a relative an upgrade to a BiPap through Medicare?

[Sleepygal1]

Hi all,

tl;dr: Relative can't raise pressure higher than 12cm without throat problems and has an AHI of 5 but an RDI of ~15-20. What can I tell the doctor to get her an upgrade to a BiLevel Machine?

I've been helping a relative that was finally diagnosed with sleep disordered breathing. She's had insomnia and wakes up while sleeping and on average sleeps about 4-5hours a night for decades. She is 70 years old and about 110lbs and 4'11", so not the usual patient they see. I believe she most likely has a mix of a tight throat causing apnea and maybe UARS with lots of RERAs going on.

She had an office sleep study and they titrated her to 10cmH2O and level 3 CFLEX. These settings helped barely anything at all, with an AHI of 15-20.

Of course I got my hands on her data in sleepyhead and started titrating her up. She's at 12.5cmH2O right now, but says the pressure is too high as it dries out her throat even with her mouth taped. 12 seems like the sweet spot for her comfort. 12-12.5 brings her AHI down to about 5, but her Dreamstation is just showing tons of RERA events (RDI of 15-20) and the doctor said she has quite a bit of restless leg. If I lower the pressure, enable auto PAP mode, or raise the flex from 0, apnea and RERA events get even worse.

On another friend who had low AHI but very high number of RERAs, I was able to move her to a BiPAP machine and get rid of all the RERA. What seemed to happen was the RERAs became Obstructive Apnea+Hypops as I raised the pressures on the BiPAP, then I finally got rid of that as pressure moved up and better control of Pressure Support and locked in those settings. I think its mostly caused by a low bar for arousal within certain people.

I'm thinking I need to do the same with my relative but the sleep doc probably will need some specific keywords to be willing to move her up to a Bilevel machine. I assume they will suggest adding more flex and raising the pressure, to simulate BiPAP but I had no luck doing it that way as it just created more Central events with this relative.

Are there any specific things I can tell the Doc to get her moved up to a more expensive BiLevel machine that will take better care of her RERA? It may just be restless leg, but I'd like to test whether it can be alleviated by BiLevel support before the sleep doc pushes for restless leg drugs instead.

[Julie]

I think you need to be careful about playing doctor with a 70 yr old who may have other reasons for symptoms even if she has a degree of apnea and unless she's recently had a full work-up with labs etc. and nothing else at all showed up, I'd be careful about advising on your own... if her doctor's not helping, maybe another one could.

[LSAT]

If the doc needs your help in diagnosing her problem...you have the wrong doctor. I agree with Julie..you should not be diagnosing and making these changes.

[Sleepygal1]

I think you need to be careful about playing doctor with a 70 yr old who may have other reasons for symptoms even if she has a degree of apnea and unless she's recently had a full work-up with labs etc. and nothing else at all showed up, I'd be careful about advising on your own... if her doctor's not helping, maybe another one could.

Fair point, but she's been through the ringer already with sleep docs for 20+ years. One actually told her "if you're tired, you'll sleep" and another said "You may just have caveman genes. Some cavemen didn't sleep much to defend the tribe". She's slept on average 4-5hours with multi-hour wakesups each night for the last 20 years at least.

What damage could I do? I slowly titrate up and watch sleepyhead daily to make sure she's not having any central events. I've yet to hear of a death caused by a CPAP machine, but perhaps that can happen. Please point me to some sources if that's the case and I'll defintely back off.

[Sleepygal1]

If the doc needs your help in diagnosing her problem...you have the wrong doctor. I agree with Julie..you should not be diagnosing and making these changes.

The doctor made the diagnosis which i am not disagreeing with. Apnea + Restless leg.

As we all know from this forum, a single study in a sleep lab (on a sleeping pill) will not get titration values right. I'm sorta surprised how hostile everyone is being since this whole forum is basically for helping out after the doctors fail us...

[Pugsy]

Medicare is going to have some fairly strict requirements to get them to pay for a different machine.
Requirements that need to be documented that meets their satisfaction....can't just be making up stuff out of the blue and have Medicare pay for it.

How about getting the doctor to order a brief trial with a bilevel machine through her DME and just see what happens and how she does?
It might provide some documentation to prove a need to Medicare...and it might not.

If she really needs more pressure and more pressure is triggering centrals then a plain bilevel like you are talking about may not be the best machine for her anyway.

Flex exhale relief...at best it's a 2 cm drop and that's if she breathes rather forcefully and if she is a shallow breather she probably isn't getting much relief even if Flex is set to 3. The most it can do is 2 cm drop and that's based on her own breathing.

[Sleepygal1]

Thank you Pugsy for the suggestions. i will suggest that to the doc when I hear from her.

I can't really tell yet if raising pressure is causing more centrals as I can't really raise it beyond 12 without her growing too uncomfortable with the pressure. I did notice a definite increase in centrals with raising the Flex settings though, so it's hard to know if bilevel will be better without running a few experiments.

She's having a heck of a time in general though, being so small, she probably should be sized with pediatric masks. It's been a fun crafting project for me hot gluing felt all over the damn headgear! At least she's being a trooper and putting up with me so far.

[Pugsy]

Using any exhale relief creates a bilevel situation and if your friend sees more centrals when Flex is used then she might be in that really small minority where bilevel pressures actually trigger centrals and if that is the case the the higher PS options might be more of a problem for your friend.

I know a woman who has a truck load of centrals when she uses PS of 4 on her bilevel auto but she needs some exhale relief because here pressures are in the teens...and with PS of 3 she doesn't have any problem with centrals to speak of.
There are a few people who simply have a fine line between what PS causes centrals and what doesn't.

Even more reason to trial a machine instead of buying one without knowing what is for sure going on.

I wish your friend had the option to trial a ResMed apap machine too...the algorithm might mean she could get by with a little less pressure and still get a good job done...be more comfortable for her.
I have used both brands...the ResMed just seems to do a better job at lower pressures than the Respironics.

[Julie]

Also look at Padacheek.com for help with the mask... you may be able to take a rest from hot gluing

[Sleepygal1]

Using any exhale relief creates a bilevel situation and if your friend sees more centrals when Flex is used then she might be in that really small minority where bilevel pressures actually trigger centrals and if that is the case the the higher PS options might be more of a problem for your friend.

I know a woman who has a truck load of centrals when she uses PS of 4 on her bilevel auto but she needs some exhale relief because here pressures are in the teens...and with PS of 3 she doesn't have any problem with centrals to speak of.
There are a few people who simply have a fine line between what PS causes centrals and what doesn't.

Even more reason to trial a machine instead of buying one without knowing what is for sure going on.

I wish your friend had the option to trial a ResMed apap machine too...the algorithm might mean she could get by with a little less pressure and still get a good job done...be more comfortable for her.
I have used both brands...the ResMed just seems to do a better job at lower pressures than the Respironics.

You know, it's funny you mention that. Her husband uses a ResMed auto pap, but she was given a dreamstation auto pap. He's very dialed in and simple (10.5 no flex). I could very easily swap machines and let her try the ResMed instead (both auto-capable so no major issue).

Are you suggesting the EPR on his ResMed may work better than the Cflex/Cflex+ on her dreamstation? I can give that a shot if so. Or no flex/epr at all and just stick with the Auto-mode with no EPR on the ResMed machine for her?

[Sleepygal1]

Also look at Padacheek.com for help with the mask... you may be able to take a rest from hot gluing

I gave her my full face pad from pad-a-cheek for her dreamwear full face mask. It was too large for her and got in the way. It seems like the whole setup isn't made for such a tiny head unfortunately....

[Pugsy]

Are you suggesting the EPR on his ResMed may work better than the Cflex/Cflex+ on her dreamstation? I can give that a shot if so. Or no flex/epr at all and just stick with the Auto-mode with no EPR on the ResMed machine for her?

EPR at 3 on the ResMed is going to be more of a bilevel situation than Flex at 3 would be. The most anyone can get out of Flex is 2 cm reduction even at that setting of 3 and they get that only if they are strong forceful breathers.

EPR at 3 gives a person a 3 cm drop during exhale no matter how forcefully they breathe...and it's going to mimic a true bilevel machine more than using Flex will.
EPR at 3 will essentially function like a bilevel machine with PS set to 3.

Since your original thought was to introduce bilevel in an effort to make her more comfortable...that's what I would do to start with...use EPR at 3 and see what happens.
If a large number of centrals pop up...then reconsider using EPR.
At this point we don't know for sure that the centrals are real and/or even related to bilevel situations....it's just a maybe thing.
Do you know how to zoom in on the flagged events to help you decide if they are real or not?
http://freecpapadvice.com/sleepyhead-free-software
Watch the above videos if you haven't seen them. The CAs/centrals you were seeing when Flex was enabled might simply have been awake/post arousal centrals because of some comfort situation since you know she isn't sleeping so great.
If they are SWJ sleep/wake/junk false positives then they may not be related to anything triggering centrals. Just more of a byproduct of crappy sleep. I had a night not long ago where my AHI was nearly 4.0. Usually high for me so I took the time to zoom in on each flagged event and not a single flagged event was real as in I was asleep when it happened. They were all related to either awake breathing or post arousal breathing. I happened to have a bad night in terms of back pain that night. Lots of tossing and turning and wake ups trying to get comfortable.

If we aren't asleep the flagged events simply don't count.

These machines can't measure sleep status...they only measure air flow and our awake/semi awake breathing can be very irregular compared to asleep breathing. These irregularities can be flagged by the machine as some sort of apnea event....so make sure that what you are wanting to kill with more pressure is worthy of being killed.

[Sleepygal1]

Thank you again Pugsy, you are amazing as usual...

I am pretty good at reading Sleepyhead reports now, having dialed in myself and a few others. There is definitely a ton of SWJ on her reports, but I'm just not clear what is causing the disturbance and wake up in the first place. Possibly restless leg, or sometimes an actual obstructive event or RERA since they seem to preclude where it gets very noisy. I'll post some images when I get to that computer with her reports.

But I am going to definitely give her a shot tonight on the ResMed machine and see if that helps anything. Definitely a great suggestion I would not have considered myself before jumping into the whole BiPap ball of wax...

I really appreciate the info!

[Pugsy]

When you see an obvious real asleep flagged event and then a lot of junky stuff after the real event...that's what I call post arousal junk.
The first event caused the wake up and any subsequent flagged junk isn't real. Best way to prevent those if you see many of them...prevent that first flagged real event with more baseline pressure if you can.

Now when you see a lot of junk flagged events and you don't know what might have caused the arousal...that's when we have to sit there and scratch our heads as to what might have caused the arousal in the first place...some minor reduction in the air flow that didn't get any sort of flag to disturb sleep or maybe the restless leg thing or dog barking or pain or leak or whatever.

Sometimes it's just crappy sleep quality and we don't know why and if we don't know why we have a real hard time trying to come up with ways to fix it.
Is she on any meds that might impact sleep quality....that sort of detective work.
Was there a leak prior to the SWJ that might have caused an arousal...that sort of detective work.
Was there an increase in pressure that might have impacted comfort?...that sort of detective work.
Finally some people just have crappy sleep and we can't put the blame on anything. If the AHI after you remove SWJ flags is relatively low...maybe back up and work on trying to simply address the "improve sleep quality" thing....which I think is where you were going with the bilevel idea. Worth trying for sure.
Hubby might not like switching machines but he should be willing to take one for the team.

Crossing my fingers here that you will maybe get some ideas on how to proceed with your friend.
Do let me know how it works out.

[palerider]

Hi all,

tl;dr: Relative can't raise pressure higher than 12cm without throat problems and has an AHI of 5 but an RDI of ~15-20. What can I tell the doctor to get her an upgrade to a BiLevel Machine?

why do you think she'd do better on a bilevel? Especially in light of:

She's at 12.5cmH2O right now, but says the pressure is too high as it dries out her throat even with her mouth taped. 12 seems like the sweet spot for her comfort.... If I lower the pressure, enable auto PAP mode, or raise the flex from 0, apnea and RERA events get even worse.

Bilevel is going to be like WAY MORE than just raising *flex. *flex maxes out at 1.5-2cm pressure difference. bilevel isn't really even considered bilevel till you get to 4, though most of them will go down to a pressure difference of 0... (but not all).

The primary benefits of bilevel is 1) higher pressure, 2) greater pressure drop between inhale and exhale. (Some Resmed bilevels do offer some breath shaping features but you haven't said anything to indicate any of that would be beneficial).

Do you have the humidity all the way up when she's complaining of dry throat?