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Possibly dubious things my sleep doctor said. Opinions needed.
#1
Possibly dubious things my sleep doctor said. Opinions needed.
I started CPAP Nov. 29th, and immediately the problems started: aerophagia with accelerated weight loss (BMI 16.9 now), and GERD interfering with my therapy (inflamed sinuses). In an epic 15-page thread, superheroes SR and Bonjour Man got me through the first month while my sleep doc was MIA. And geeks helped me on the software forum. Woweeeeeee, what an intro!

Finally, today was the day. I went to the sleep doc bringing gifts of data and questions.

Possibly dubious statement No.1:
Me: The oximetry stats on my titration study were horrible. ODIs were worst at pressures 8, 9, 10, and 11 cm. And at 12 cm ODI suddenly it dropped from 38 to 2.2?? Really??
Doc: What do you mean by ODI?
Me, haltingly: Oxygen Desaturation Index
Him: They don't focus on desaturation in a sleep study.
Me: But the numbers are right here. [We look at the column "Desat Index"]
Me: My ODIs are much better now. [I had 12 days' data from my new oximeter.]
Him: Oh, this index is calculated differently, though.

Is it? I can see that they adjusted for whatever percentage of the time I was asleep, but otherwise it's desat events divided by time.
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#2
RE: Possibly dubious things my sleep doctor said. Opinions needed.
Possibly dubious statement No. 2:

Doc: For people with aerophagia, a nasal mask often works better.
Me: Would that really work for me, though? With the sinus constriction I've got?
Doc: You can find out by trying it. Just call Patty and ask her to set you up.
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#3
RE: Possibly dubious things my sleep doctor said. Opinions needed.
What kind of Duck did you say this is?

What are the actions following this meeting?
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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#4
RE: Possibly dubious things my sleep doctor said. Opinions needed.
I'm coming to the conclusion that sleep medicine is the dumping ground for Doctors who can't quite cut it. I'm sure there's a few good ones. Very few.
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#5
RE: Possibly dubious things my sleep doctor said. Opinions needed.
Aerowhatever (can never remember nor spell it) is caused by air entering the stomach. It is a common thing. It isn't the MASK that contributes. Well, I suppose one might extrapolate that a full face mask might contribute more because the mouth can be open yet pressure not be lost.

The best treatment for this is to raise the head of the bed. Either raise the mattress itself or the bed.

Another treatment is to decrease the pressure then slowly increase. I got this condition bad after any pressure increase change when I used a CPAP (vs the APAP).

So, is the doc incorrect in his statements? Yes. Just the fact he did not know what the ODI was raises a red flag. Granted, there's a lot of alphabet soup in this medical specialty but... Then the "it is calculated differently" is hogwash. An index is an index. It is events and time and math. None of that changes.
PaulaO

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#6
RE: Possibly dubious things my sleep doctor said. Opinions needed.
While what your doctor said does not inspire confidence, it helps to go in with a clear objective for the outcome of an office encounter. In your case I thought that might be to either trial oxygen supplementation to CPAP therapy at lower pressure, or possibly a bilevel pressure. To get to this objective, you must define the problem. The problem is the chronic low oxygen levels you experience with or without CPAP therapy, as indicated by your sleep study, titration study and continuing monitoring with an recording oximeter. Aerophagia is a complication of therapy that significantly reduces your tolerance to CPAP pressure alone. Your doctor's job is to understand that suite of issues and help identify a solution (problem-solving).

I have a long career as a consultant and my job is to solve problems with engineering and technical solutions that work in a difficult regulatory environment that limits solutions or at least affects the costs of implementation. It's not a stretch of the imagination to say that your doctor has the same job, to solve complex medical problems within a complicating environment of insurance and practice standards. When I cannot solve a problem, I reluctantly refer clients to someone I think can help, or bring in that expertise to work as a team. The alternative is to be fired or fail to solve the problem. Your doctor is in that position right now and has offered no solution and has instead attempted to obfuscate the problem and offered an ineffective distraction in the form of a mask change. This does not address the problem. What should you do?
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#7
RE: Possibly dubious things my sleep doctor said. Opinions needed.
(01-03-2019, 11:30 PM)bonjour Wrote: What kind of Duck did you say this is?

What are the actions following this meeting?

All the info I find online is that he is certified in family medicine and sleep medicine, in practice for 26 years, graduated from Yale U. School of Medicine in 1992. He works full time at the VA hospital and does his civilian clinic sporadically. It's clear to me he has no time to look at the data I transmitted from the ResMed machine.

Actions:
It's fine to keep pressure at 6 cm, since it provokes less aerophagia and the AHIs look fine to him; in fact they are lower than they were at 10-12 cm.
Keep experimenting with Zantac; since taking it before meals doesn't help with nighttime GERD/sinus inflammation, try some at bedtime or in the middle of the night when I get up.
Possibly see Patty at the DME about a nasal mask. (I was going to call her and ask if that makes any sense to her.)
Just a suggestion: He thought adding more dairy into my diet would help me gain weight, and suggested ice cream for the calories. [I think that might provoke GERD, but didn't say so. I do eat Coco-Bliss ice cream, but that's not dairy.]

[He thinks I should be on a PPI, but defers to the PA at the gastroenterology clinic. I told him I was given a choice, and chose the Zantac because the inactive ingredients are less horrible than those in the Omeprazole.]
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#8
RE: Possibly dubious things my sleep doctor said. Opinions needed.
(01-04-2019, 03:18 AM)PaulaO2 Wrote: Well, I suppose one might extrapolate that a full face mask might contribute more because the mouth can be open yet pressure not be lost.

The best treatment for this is to raise the head of the bed. Either raise the mattress itself or the bed.

Another treatment is to decrease the pressure then slowly increase. I got this condition bad after any pressure increase change when I used a CPAP (vs the APAP).

My aerophagia is directly associated with sinus constriction from GERD. I presume it happens because I open my mouth and get pressurized air, and there is a downstream vacuum effect because of the digestive juices in my nasal passages: 

Quote:Although people generally attribute throat mucous to post-nasal drip, in most cases there’s nothing dripping down the back of the throat. It’s actually coming from your stomach. However, in some cases, since your stomach juices can reach your nose, it can cause nasal congestion and inflammation, which can aggravate tongue and soft palate collapse by creating a vacuum effect downstream. Ultimately, it’s a vicious cycle.
https://www.kevinmd.com/blog/2010/10/com...-face.html

The head of the bed is already raised 4".
I've already done the pressure titration, under Sleeprider's guidance. I started at 6 cm, and got worse at 7 cm.
Thanks, Paula02, for your impression of his knowledge. I think he knew about the desaturation index, but didn't know it was part of the sleep study. He then pointed out the very limited time I spent asleep when most of those measurements were generated, except the one at 12 cm.

I think he has a point, since I'm seeing that big dips in oximetry happen each time I fall asleep, and they are associated with waking/sleeping CAs. But Bonjour & SR are right when they say the sleep tech should have gathered more data at 6 cm. She put in her notes:

Quote:CPAP @ 7 appeared to do well while on her side, however once on her back events became severe.
CPAP titrated to 12 for events supine, she was then on her side the rest of the night, so it is not clear if all events supine are under control.
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#9
RE: Possibly dubious things my sleep doctor said. Opinions needed.
(01-04-2019, 10:51 AM)Sleeprider Wrote: In your case I thought that might be to either trial oxygen supplementation to CPAP therapy at lower pressure, or possibly a bilevel pressure.  To get to this objective, you must define the problem.  The problem is the chronic low oxygen levels you experience with or without CPAP therapy, as indicated by your sleep study, titration study and continuing monitoring with an recording oximeter.  Aerophagia is a complication of therapy that significantly reduces your tolerance to CPAP pressure alone.  Your doctor's job is to understand that suite of issues and help identify a solution (problem-solving).  

[...]Your doctor is in that position right now and has offered no solution and has instead attempted to obfuscate the problem and offered an ineffective distraction in the form of a mask change. This does not address the problem.  What should you do?

Oh, Sleeprider, it was such a can of worms. I was going to post to you about it on my epic thread. Shall I do it here instead?

I surely do appreciate your assessment that he is obfuscating the problem, because he is. I have clarified it with my 12 days of data. So far, my brain fog is not correlated/associated with worse oximetry. It is directly associated with worse sinus inflammation. It's moderately bad so far this morning. Yesterday I felt stellar (relatively less sinus inflammation during the night and day).

However, since my oximetry is low, I pulled out the stack of oximetry reports, and he said what he'd seen so far wasn't something to be worried about (which is ridiculous, and it means he didn't look at my 2 faxes where I set the parameters at 3% drop and  89% desat threshold).

I managed to point out that I'm averaging  5.01 minutes a night at  89%. [Actually, it's less now.] He said that these are normal drops that everyone has with CA clusters when falling asleep. I tried to show him that minute ventilation is lower on average at 6 cm pressure than at 10-12 max pressures. (I figured out in Sleepyhead's overview tab how to select a group of days and get those averages.) He looked at the bar chart I printed up and said these were not levels to be concerned about. He wouldn't look at the calculations that showed the difference at higher vs. lower pressures.

He is always in a hurry to dismiss my questions. So many men seem to be intimidated by my disagreeing with them or showing them evidence. I think he is one of those. I started this thread because my own knowledge is so new, so limited, that I have trouble gauging whether it's knowledge he is lacking or an ability to communicate directly enough to answer my questions. Obviously he's lacking the time to look at data. He steered me right out of oxygen desat data to the "apnea-hypopnia" column on the sleep studies. I said, "Oh, that's the AHI." He said, I suppose it is, or something weird. Maybe he just doesn't like abbreviations?

There is only one other sleep doc, who comes here from Great Falls one day a week. Other than that, I'll be seeing a PCP doc at the state employees' clinic next week, and I haven't seen her for a year. She started me on all these specialist referrals.
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#10
RE: Possibly dubious things my sleep doctor said. Opinions needed.
If I didn't need a prescription for oxygen, I would just go ahead and rent a machine to try it out.
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