Visited a sleep doctor and I was pretty underwhelmed

[CPAPSteve]

So a while back I had posted a question asking how I would know if I still needed CPAP.

The takeaways from my last post if memory serves me correctly is:
1. Sleep apnea generally doesn't go away unless some drastic weight changes occur. In my case, I'm the same exact weight when I was prescribed a CPAP over 2 years ago so really nothing in that regard has changed.
2. Despite OSCAR/Sleepyhead showing barely any events would suggest that the CPAP is doing its job properly and thus keeping my AHI values exceptionally low (often at 0.0 or 0.1-0.5 and never more than that).
3. My average pressure seems to hover around 12-14 cms consistently. My baseline starting pressure is 11.4 and I've since lowered it to 9 b/c recently it would seem that I was getting some aerophagia symptoms so I figured I'd try to dial pressures down a bit. Even with a lowered baseline pressure seems consistently at around 12-14cms.

I went to see a supposed "specialist" b/c I mentioned to my allergist that with the improvement in my overall health that maybe I no longer need to use a CPAP. Coincidentally he knew of a "reputable" sleep doctor that could weigh in on my current situation. In the past, my PCP would refer me to a sleep clinic and they would do a basic level 3 study (no charge) and if I qualified then my PCP would prescribe me a CPAP which is how I got my machine in the first place.

FFWD to today, I see this "specialist" and they ask a few fairly basic questions about my sleep habits and so on and I was quite surprised by his responses and how dismissive he was about what I presented him. I'll lay them out here and you folks here can weigh in on whether or not he's being overly dismissive.

1. Me: "I have examined my own data and while I barely have any events aside from the odd OSA, hypopnea, and RERA that my 95% max pressure is around the 12-14cms consistently each night with a start pressure that used to be at 11.4 and since has been lowered to 9. If my treatment pressure rises up to 12-14 consistently I would presume that the machine is clearly detecting something and pushing up the pressures to keep the airway open."
Doc: "The pressures at which the CPAP ramps up to has no relevancy on determining if you have OSA."

2. Me: "I often suffer from really dry mouth even though I try my best with a FFM to keep my mouth closed. Even with the humidifier on max that it is really dry and often causes me to get up in the middle of the night where I have to get up to drink water."
Doc: "That's surprising especially when you're humidifier is set to maximum humidity."

3. Me: "What started this whole ordeal with using a CPAP several years ago was a result of me having crazy night sweats that would occur almost every other night to the point of my sheets and blanket and clothing being completely soaked. After I started using CPAP that it almost immediately stopped".
Doc: "Hmm, that is odd and unusual and not typical of OSA and CPAP treatment".

4. Me: "I was diagnosed with adult ADHD back in 2004 and reconfirmed again in 2018 as well but I was suspicious of taking stimulants b/c it made me more jittery than they did helping me focus on things. I was in my youth always really tired and incapable of focusing on things and often fell asleep in class and nearly died trying to stay awake in meetings. I would often be moody but that COULD be attributed to stress levels of my past job but how do you explain 15+ years of feeling tired and wanting to take naps all the time?
Doc: "hmmm, do you take naps now and how are your general concentration levels?"
Me: "I almost never nap, I've completed my first ever half marathon recently which I could NEVER dream of achieving in the past. In general, I feel half decent MOST days and while I can get moody at times that I'm overall a more calm and less irritable person."

5. Me: "How accurate are the level 3 take-home tests?"
Doc: "Well given that your AHI when sleeping on your sides is a 3 (I thought it was a 5 for some reason) and on your back it is an 8 and your oxygen is typically at 95% but momentarily dipped down to 82% a few times that the AHI results don't align with someone that would have significant OSA. I'm surprised you got a CPAP to treat something so mild. Normally if you have significant desats that your AHI would be higher than what you scored."

6. Me: "Well should I get retested at your clinic?"
Doc: "Well the best gold standard test is the level 1 where you stay here overnight and the cost is $1000. It will tell all sorts of things including identifying other sleep disorders you may not be aware of. Currently, there is no gov't subsidized coverage and it's all out of your pocket unless you have a health benefits spending account to cover the cost. We could do another level 3 study but as I had pointed out earlier they are notoriously inaccurate and could give inconclusive results similar to what your original report from 2018 shows. The last alternative is simply do nothing and continue on with you using your CPAP as it is since you say it helps you feel better and your night sweating syndrome seems to have mysteriously stopped when you started using CPAP."


So my visit with this new specialist was rather short and I left scratching my head on what I should be doing. I am very curious about whether or not I do have OSA but I'm not sure if shelling out $1K to do a level 1 test is worth the trouble (I'd likely have to pay 100% out of pocket. The doctor is probably right that a level 3 test (at a cost of $200 from his clinic) would probably yield less than ideal results which wouldn't get me any further ahead than where I'm at today. The best alternative it seems is to just carry on as I always have and strap on a mask and go to sleep and just accept that I might have or might not have OSA? I don't hate my CPAP and in fact, have been a huge advocate to friends and family on the great things it has done for me so far. Ideally, it would be nice to not have to continue using one if I don't need to since it does drive me batty to have the Sahara desert in my mouth all the time. Taping, soft cervical collars, chin straps all don't work all that great. A hard cervical collar works wonders for me but it is so restrictive that at times it can be bothersome especially in the warm months.

Is the doctor overly dismissive? Does what he say make any sense?

Thanks for the help,

[Julie]

Please post Oscar results here - they are very comprehensive and will tell you almost as much as a lab study does. Remember, the '95%' is about being anything up to' 95, not a static 95 level.

[Pugsy]

Do you know that there is a level 2 home sleep study that pretty much gathers what the in lab sleep study does?

http://freecpapadvice.com/home-sleep-tests

[CPAPSteve]

Here are some screen shots from sleepyhead. Running and older computer and never got around to installing oscar. The MOST recent chart is set at a fixed pressure of 4.0 (not sure why sleepyhead says its variable pressure b/c it wasn't). The other screen shots were from April 2021 and July 2018 when I first started CPAP therapy.

I am about the same weight and size as I was back in 2018 when I started treatment.

What could've have changed to make my results look like someone that doesn't have OSA ?

[Pugsy]

The reports using 4 cm DO NOT mean you don't have OSA. All they mean is that at 4 cm pressure the airway is held open well enough to make it seem like you aren't having events.

We have zero idea, or way to know, if the airway tried to collapse and 4 cm prevented the collapse or if maybe it didn't try to collapse and you don't have OSA (or enough events to earn a diagnosis).

You are asking questions that we can't give answers to with the data available.

There is more to the OSA diagnosis and the symptoms than just AHI.
There's snoring, flow limitations, sleep disruptions, etc. There's more to sleep disordered breathing than just AHI.

[CPAPSteve]

Thanks Pugsy,

That's just it... no flow limitations that I can see, no snore (never really snored much even before CPAP) so therefore it makes me wonder if I should just stop using the machine for a few weeks and see what happens.

I guess the only true answer is to get a level 1 sleep study done or just accept the status quo and keep masking up since it does me no harm.

[Miss Emerita]

The two recent charts show significant amounts of flow limitation. This may or may not be affecting the quality of your sleep; the number of RERAs in the most recent chart suggests that it may be somewhat disruptive. (RERAs are respiratory effort related arousals.)

Have you ever tried using EPR for the whole night (and not just the ramp period)? EPR drops your pressure during exhalation by the number of cmH20 that you set. The minimum pressure that can be delivered by the machine is 4, so, for example, if EPR is 3 but you have the pressure set at 5 fixed, you will get only 2 cmH20 of EPR.

Anyhow, I would suggest that you experiment by setting EPR to 2 for the full night. I think you can leave your minimum at 9, though if you get a bunch of obstructive events, you could raise it a little.

[CPAPSteve]

The two recent charts show significant amounts of flow limitation. This may or may not be affecting the quality of your sleep; the number of RERAs in the most recent chart suggests that it may be somewhat disruptive. (RERAs are respiratory effort related arousals.)

Have you ever tried using EPR for the whole night (and not just the ramp period)? EPR drops your pressure during exhalation by the number of cmH20 that you set. The minimum pressure that can be delivered by the machine is 4, so, for example, if EPR is 3 but you have the pressure set at 5 fixed, you will get only 2 cmH20 of EPR.

Anyhow, I would suggest that you experiment by setting EPR to 2 for the full night. I think you can leave your minimum at 9, though if you get a bunch of obstructive events, you could raise it a little.

I actually disabled EPR and only have it enabled during ramp. I guess I can re-enable it and see.

I'm conditioned (like so many here) to put on the mask and drift off to sleep. No harm in staying with that routine I guess even if it might not be doing anything for me anymore. I'll dig into my work benefits to see if they will cover some of the Level 1 testing cost.

Do you folks here agree that the level 3 tests are highly inaccurate? I swear in one of my posts I was told that they're fairly accurate.

[Pugsy]

Level 3 home sleep studies are fairly accurate at least in terms of the data it records.
Problem is .....it can't tell if a person is asleep or not and that's kinda important to know.
It only measures air flow, O2 levels and maybe pulse rate.
If you are awake and hold your breath for 30 seconds...it's going to flag some sort of 30 second apnea event but if you are awake then it isn't real is it?????

Level 2 home sleep studies will have EEG leads and actually give data so that the techs can see if someone is asleep or not when something gets flagged.

Level 2 studies cost more than Level 3 but less than the in lab studies.