ASV/ Central apena - Time for a second opinion?

[Fiesty Folder]

I was recently diagnosed with central sleep apnea, then had a titration study for cpap then a second for ASV. The study was originally to look for plmd, not apnea, I usually sleep straight through for the first 6 hours of sleep then start to jerk awake as my Parkinson's meds wear off. I take a nap once a month max. My sleep doctor and I are currently in disagreement, he wanted to give cpap a try for a month to see if the centrals that existed before treatment will disappear in time. I feel that since prior to asv titration he was warning me away from cpap that's a bad idea and I'm starting to get the sense he doesn't have that much experience with centrals and that his technician doesn't either (the practice is so small that there is only one technician covering two locations)

I want to make clear I am open to using a machine as long as it's not objectively making things worse.

Complicating factors-
-I have delayed sleep onset disorder, if I get to sleep before 3am it's a great night, wake up at all my sleep studies was 6am
-I take pain meds and have been diagnosed with Chiari one malformation as well as Parkinson's disease all of which cause apnea. My sleep dr thinks the pain meds are the cause of my apnea, my neurologist thinks my Parkinson's is the cause ( becuase a few years ago I had a sleep study and my AHI was 0.5, at the time I was taking twice as much pain meds as I am now and the only thing that's changed is the Parkinson's) I freely admit I don't know who's right.



So with all that said here's the numbers from my studies



Sleep study 1- diagnostic

Notes- slept 7 hours night before, my father called while I was trying to fall asleep, the sensors were driving me nuts

TIB-454 minutes
TST-146 minutes
AHI- 15.2
Low Sp02- 86%
RDI-15.6
Sleep efficacy-32%
Sleep latency-235 minutes
REM-13.5%
Average Spo2-95%
Time spent with spo2 below 90%- 20 seconds
AI- 14
HI- 1.2
REM AHI- 6.2
Central AHI- 13.2
RERA total-1

Arousal index- 14.4
Awakening index- 1.2




Sleep study 2- cpap
Notes- slept 3 hours night before- pretty relaxed- was instructed to take double my usual dose of Ativan- also this time the head of the bed was raised like my bed at home is- breathing against the pressure didn't bother me at all- the sensors were more bothersome than the mask- I kept wondering if it was even blowing because I couldn't feel it- however it did make my ears pop and I swallowed so much air that my appetite was decreased for two days- and I am currently struggling to keep my weight up

TIB-485 min
TST-285 min
AHI- 14.5
Low Sp02- 90%
RDI- 23.3
Sleep efficacy- 59%
Sleep latency- 140 min
REM- 8.2
Average Spo2- 95%
Time spent with spo2 below 90%- 0
AI- 14.5
HI- 0
REM AHI- not given
Central AHI- 13.6
RERA total- 42

Arousal index- 28.5
Awaking index- 7




Sleep study 3 asv titration
Note- slept 9 hours night before- had a very upsetting conversation with my mother who has dementia immediately prior to arriving at sleep study- the conversation left me wondering if she was hallucinating again. I also found the oscillating noise of the machine hard to sleep through- the next morning I thought I hadn't slept at all- however I did not struggle with ear popping or swallowing air. I did have average leak rates of 35%
TIB- 427 min
TST- 185
AHI- 4.2
Low Sp02- 85%
RDI- 22.5
Sleep efficacy- 44%
Sleep latency- 75 minutes
REM- none
Average Spo2- 96%
Time spent with spo2 below 90%- 3 minutes
AI- 1.6
HI- 2.6
REM AHI- not given
Central AHI- 0
RERA total- 56

Arousal index- 30
Awaking index- 13

My sleep felt more fragmented at all of my studies than it usually does. I had a headache for days after studies number 1 & 3 indicating to me they were not my normal.

So at my last appointment my Dr suggested that we try cpap and hope the centrals resolve themselves- his argument was I'd slept the soundest during that study- I pointed out I was the tiredest during that study, and can't afford to have my calorie consumption under a thousand a day due to air swallowing. He sent me home with a recording oximeter to try to get data to support insurance covering overnight oxygen by itself. But with my O2 numbers so good that's unlikely.

To me it doesn't seem sensible to go on cpap for one fewer apnea a night and a difference in O2 stats that could be explained by the head of my bed being raised (the de-sats in my first study was during my one obstructive apnea)

So am l wrong about giving cpap a try for a month? If oxygen is approved should I give that a try? Or is it time to seek out a second opinion and find a sleep center with more experience with ASV titration? I'm just so frustrated with the whole process that I want to give up and focus on my other health issues for right now (I was first referred to this dr in JULY) and I know that frustration can lead to poor decision making, so I'm asking the opinion of people with more experience in this area. Am I thinking it's time for a second opinion out of pure frustration or because the numbers actually support a second opinion being a good idea?

Thank you so much for your time and for letting me vent.

[Julie]

It's important to know whether your 'centrals' are occurring around the time you fall asleep and then when you're about to wake up, vs in clusters all night long. The first type would be normal - called sleep-wake-junk - and not worrisome, more likely 'clear airway' events rather than true centrals. The second type would be the ones to try ASV for as Cpap doesn't address those at all.

I was unaware that Parkinson's 'causes' OSA, but if it even accompanies it a lot of the time I'd be concerned about the meds possibly affecting your sleep too.

Robysue, a very knowledgable member, is an expert in insomnia, so I'll leave all that for her to comment on.

One thing - what are your pressure settings?

[palerider]

It's important to know whether your 'centrals' are occurring around the time you fall asleep and then when you're about to wake up, vs in clusters all night long. The first type would be normal - called sleep-wake-junk

there is no swj in a lab study, swj is just second guessing what the cpap is seeing in the airflow, in a study, they've got eeg.

[Fiesty Folder]

I don't know what my pressure settings are since no prescription has been written ( my numbers are all from attended PSGs)
In my diagnostic study I only had 1 obstructive apena, 1 mixed and 32 centrals as scored by the technician so I assume they weren't sleep wake junk.

[Pugsy]

Centrals noted/recorded during an in lab sleep study are true centrals. SWJ centrals wouldn't be included in the numbers.
So your centrals are the real deal since these are in lab sleep study results.

I have my doubts as to whether they (the centrals) will reduce with cpap therapy on their own over a period of time but it wouldn't be totally impossible.

[Julie]

Good point PR (didn't have a lab study here).

[robysue]

Fiesty Folder,

As Palerider and Pugsy have both pointed out, on an in lab PSG, any central apnea that is recorded is the real deal. And it looks to me like the problem on your diagnostic sleep test is primarily a problem with central sleep apnea since on that diagnostic sleep test, your AHI = 15.2 and your Central AHI- 13.2. So that means the obstructive stuff is trivial---the OAI + HI = 2.0. And there was only one RERA scored all night.

You write:

My sleep doctor and I are currently in disagreement, he wanted to give cpap a try for a month to see if the centrals that existed before treatment will disappear in time. I feel that since prior to asv titration he was warning me away from cpap that's a bad idea and I'm starting to get the sense he doesn't have that much experience with centrals and that his technician doesn't either (the practice is so small that there is only one technician covering two locations)

I can certainly understand why you are having the disagreement with the sleep doc. After all, he's the one who ordered the ASV after seeing the results of the CPAP titration. And the results of the CPAP titration certainly warranted a followup ASV study. And since the ASV study was successful reducing the number of centrals to 0, you'd think that would be enough for the sleep doc to put you on an ASV.

One possible explanation might be your insurance company's requirements. A lot of insurance companies seem to require that *all* apnea patients start out on CPAP/APAP, and only allow the machine to be changed to a more expensive machine if the patient has used the default machine for a month, but the treated AHI remains too high or the patient's daytime symptoms have not resolved or the patient is having real problems tolerating therapy, but is clearly not just giving up on the machine because it's not comfortable to sleep with. So it is worth calling your insurance company and asking them directly what their rules are for paying for an ASV machine.

And then there's this odd ball thing in the sleep study data: While you only had 1 RERA and an HI = 1.2 on the diagnostic sleep study, the number of RERAs skyrocketed to 42 on the CPAP titration and 56 on the ASV titration. And that's counterintuitive. It's also unusual to see the time spent with SpO2 below 90% increase between the diagnostic study (20 seconds) and the ASV titration (3 minutes.) That's also unusual. And figuring out why either of these two things would happen it's way above my pay grade. But it probably would be a good idea to ask both the neurologist who is treating the Parkinson's and the sleep doc who is supposed to treat the sleep apnea why they think the RERAs skyrocketed with xPAP along with whether they think the number of RERAs is excessive.

(An aside: I'm really missing Sludge right now---he'd be able to answer some of the questions I've just raised.)

You also write:

I want to make clear I am open to using a machine as long as it's not objectively making things worse.

and

-I take pain meds and have been diagnosed with Chiari one malformation as well as Parkinson's disease all of which cause apnea. My sleep dr thinks the pain meds are the cause of my apnea, my neurologist thinks my Parkinson's is the cause ( becuase a few years ago I had a sleep study and my AHI was 0.5, at the time I was taking twice as much pain meds as I am now and the only thing that's changed is the Parkinson's) I freely admit I don't know who's right.

I don't know anything about your docs. But it sounds like you've had a long term doctor-patient relationship with the neurologist. If you have come to trust the neurologist's judgement and ideas over the years, then I'd say the neurologist is probably correct about the cause of the central sleep apnea. And in that case, you might ask the neurologist if s/he would be willing to write a script for an ASV machine for you.

You also write:

My sleep felt more fragmented at all of my studies than it usually does. I had a headache for days after studies number 1 & 3 indicating to me they were not my normal.

It's not uncommon to get badly fragmented sleep during a sleep study: It's not normal to try to go to sleep at a time that you don't usually go to bed in a strange room with all kinds of wires hooked up to you and knowing there's someone who is watching you (or the data from the sensors) all night long. And then you also had an upsetting incident in your personal life happen right before Study #3, and that's also going to make the sleep subjectively worse on that night.

But the folks who design sleep studies know (or ought to know) that sleeping in a lab is different than sleeping at home. So they've taken that into account. And studies have been done that what fragmented sleep you get in the lab is decent enough for the data to show if there's a real problem with either apnea or PLMD (or both).

So the data that indicates you have central sleep apnea is reliable enough to say that you've got enough of a problem to describe it as mild-to-moderate central sleep apnea.

You ask:

To me it doesn't seem sensible to go on cpap for one fewer apnea a night and a difference in O2 stats that could be explained by the head of my bed being raised (the de-sats in my first study was during my one obstructive apnea)

So am l wrong about giving cpap a try for a month?

The question in my mind is whether your insurance company is insisting on the one month trial of cpap before they'll authorize switching you to the ASV machine. Call the insurance company and ask them rather than relying on the sleep doc to talk to the insurance company for you.

If oxygen is approved should I give that a try?

I'm not sure what night time O2 is supposed to do for you given that your SpO2 numbers are not that bad. What does the neurologist think of this idea?

For what it's worth, I'd be reluctant to start nighttime O2: CPAP is just pressurized room air and supplemental O2 is not "just pressurized room air."

Or is it time to seek out a second opinion and find a sleep center with more experience with ASV titration?

It may indeed be time for a second opinion.

Again, however, it is critically important for you to have a good idea what your particular insurance company requires in terms of testing and in terms of "failing at CPAP" before they'll authorize paying for the much more expensive ASV machine.

I'm just so frustrated with the whole process that I want to give up and focus on my other health issues for right now (I was first referred to this dr in JULY) and I know that frustration can lead to poor decision making, so I'm asking the opinion of people with more experience in this area. Am I thinking it's time for a second opinion out of pure frustration or because the numbers actually support a second opinion being a good idea?

It's understandable that you are totally frustrated.

But you are also not a typical sleep lab patient who comes in, gets tested and winds up with the (totally expected) diagnosis of uncomplicated OSA. A point in your current sleep doc's favor is that s/he ordered the ASV titration. If s/he were totally unfamiliar with central sleep apnea, that might not have happened.

What I would suggest doing at this point is the following:

Step 1: Contact your insurance company. Ask them about whether a patient with central sleep apnea must "fail" at CPAP/APAP before being allowed to move on to an ASV machine. Note: Some insurance companies may actually require a patient with central sleep apnea to first try (and fail) at CPAP/APAP and then try (and fail) at bilevel PAP before authorizing payment for a trial on an ASV machine. If your insurance company does require a central sleep apnea patient to "fail" at CPAP first, ask them what "fail at CPAP" actually means: Does it mean you have to use a CPAP for a month? Or does it mean having a CPAP titration that shows the number of CAs was still clinically significant?

Step 2
What happens next depends on what your insurance company tells you about the procedure for authorizing payment for an ASV machine.

If your insurance company insists that you try CPAP for a month before they will authorize an ASV machine: In this case, you probably ought to talk to both your neurologist and the sleep doc about whether doing the month long CPAP trial that is unlikely to fix your central sleep apnea is worth it since at the end of that month you will should be able to move on to the ASV machine that is likely to fix your central sleep apnea. Obviously only you and your docs can sort out whether the fact that CPAP is very likely to disrupt your sleep and cause problems with aerophagia (air in the stomach) and possibly make it harder for you to maintain your weight is worth it if that is the only way you can get authorization for an ASV.

If your insurance company does NOT insist that you try CPAP for a month before they will authorize an ASV machine: Talk to your neurologist about your concerns. Ask the neurologist if s/he would write the script for the ASV machine. If the neurologist is unwilling to write the ASV script, then it probably is time to get a second opinion from a clinic that does have some experience with treating central sleep apnea and titration ASV machines.