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+--- Thread: Soon to start CPAP - Question on dehydration (/Thread-Soon-to-start-CPAP-Question-on-dehydration)
RE: Soon to start CPAP - Question on dehydration - Sleeprider - 12-13-2018
We're not seeing reduced CA with either lower pressure or EPR. The picture is coming into focus,as are your doctor's assumptions. This central apnea is not a transient event, but is a real issue to be dealt with. There are two types of doctors, those that think they know, and those that actually know... the data does not lie. You have a complex problem of aerophagia and complex apnea. You deserve the latter type of doctor.
General rules of thumb like "don't worry about CAs; they'll subside as you get used to CPAP" while generally true, do not apply to people like you.
RE: Soon to start CPAP - Question on dehydration - picante - 12-13-2018
(12-13-2018, 09:14 PM)Sleeprider Wrote: We're not seeing reduced CA with either lower pressure or EPR. The picture is coming into focus,as are your doctor's assumptions. This central apnea is not a transient event, but is a real issue to be dealt with. There are two types of doctors, those that think they know, and those that actually know... the data does not lie. You have a complex problem of aerophagia and complex apnea. You deserve the latter type of doctor.
General rules of thumb like "don't worry about CAs; they'll subside as you get used to CPAP" while generally true, do not apply to people like you.
Thank you, Sleeprider, you just discerned what I've been wondering about. I slept so little during my titration study (2 1/2 hours) and the mask was prone to loud leaks of the flatulent type, at least at 12 cm pressure it was. The Airfit F20 is so much better fitting.
I didn't see how the doc could possibly diagnose on that basis. This doc works full time at the VA hospital and sees the rest of us in a very small time slot. Really, it appears that he is not paying attention to any but the most superficial data. I wonder if perhaps he's the only sleep doc in town. Helena is the capital, but it's only got 31,000 people. I'll ask around.
My sinuses get more constricted on CPAP than without. I'm rinsing twice in the middle of the night now. So that's one vicious circle. I don't know if there are others.
The aerophagia is probably going to respond to whatever helps my sinuses / GERD / whatever-else gastro-intestinal I've got. My next test is for SIBO next Wednesday. Then I'll get to talk to the PA and she'll have my endoscopy results. All I know is the discharge summary said everything "looked good", so no esophageal damage, and that's REALLY reassuring!
RE: Soon to start CPAP - Question on dehydration - picante - 12-15-2018
The last 2 nights I've been delaying my CPAP start time until the middle of the night to try and hit that before-waking time slot where my apneas seem to be worst. Thurs & Fri. screenshots show that my usual early-night time slot has been misleading, which is why I've had a few excellent AHIs, but feel like garbage in the morning.
Last night I raised my min. pressure (range 9-10 instead of 8-10) to see if it would attenuate that thick cluster of apneas I've been getting, usually between 15 & 30 minutes after each start time.
[attachment=9403] [attachment=9404]
My stats from last night look better, but I feel worse than yesterday. Would that be because of the mask leak? I was unaware of it, but it persisted even after my 5:15 drink of water. I also see that tidal volume is down. Is this considered low?
Or is this more likely because of the time I slept without the CPAP? I'm still having to limit myself to 4-6 hours max in order to mitigate aerophagia so I can eat.
RE: Soon to start CPAP - Question on dehydration - picante - 12-15-2018
(12-13-2018, 10:26 PM)picante Wrote:(12-13-2018, 09:14 PM)Sleeprider Wrote: We're not seeing reduced CA with either lower pressure or EPR. The picture is coming into focus,as are your doctor's assumptions. This central apnea is not a transient event, but is a real issue to be dealt with. There are two types of doctors, those that think they know, and those that actually know... the data does not lie. You have a complex problem of aerophagia and complex apnea. You deserve the latter type of doctor.
General rules of thumb like "don't worry about CAs; they'll subside as you get used to CPAP" while generally true, do not apply to people like you.
I didn't see how the doc could possibly diagnose on that basis. This doc works full time at the VA hospital and sees the rest of us in a very small time slot. Really, it appears that he is not paying attention to any but the most superficial data. I wonder if perhaps he's the only sleep doc in town. Helena is the capital, but it's only got 31,000 people. I'll ask around.
I called both my insurance and the neurologist who referred me for the sleep study. The neuro is going to get back to me with sleep doctor recommendations. She'll know about the ones who aren't listed under the "sleep" category; the insurance co. does not. I really need someone who is available enough to actually look at my data.
RE: Soon to start CPAP - Question on dehydration - Sleeprider - 12-15-2018
What you need is for someone to recognize you have failed CPAP and recommend a Bilevel/ASV titration study. Your apnea remains complex or mostly central.
RE: Soon to start CPAP - Question on dehydration - Gideon - 12-15-2018
Let's see where you are at
Justifying Advanced PAP Machines
Complex Sleep Apnea
For Complex Sleep Apnea the Medicare requirements for issuing an ASV machine.
- Titrate to minimize OSA, that is the obstructive AHI to less than 5 per hour. This typically is raising EPAP or pressure until obstructive AHI is less than 5 per hour, we expect this to make the Central and Complex Apnea worse thus failing the current treatment
- Record the central apnea-central hypopnea index (CAHI) (looking for greater than or equal to 5 per hour and greater than 50% of total AHI)
- Document the presence of at least one of the following symptoms: These symptoms are specifically noted by Medicare. These are key symptoms that we look for by asking "How do you feel?". Do not limit your answers to the following and do not fabricate the answers.
- Sleepiness: "How do you feel?" and morning brain exhaustion has been so severe lately
- Awakening short of breath: "How do you feel?"
- Difficulty initiating or maintaining sleep: "How do you feel?" I've been taking off the mask in the wee hours due to gut-aches
- Frequent awakenings: or "How do you feel?" [b]I've been taking off the mask in the wee hours due to gut-aches[/b]
- Nonrestorative sleep: "How do you feel?" Nonrestorative sleep is defined as the subjective feeling that sleep has been insufficiently refreshing morning brain exhaustion has been so severe lately
- Snoring: Can be documented on Sleepyhead
- Witnessed apneas: Most of us have this one with our significant others
I'm missing your original Sleep Study, the one without CPAP. If that indicates Central and/or Complex Apnea is present then you definitely do NOT have Treatment Onset Central/Complex Apnea, this is what your doctor is referring to when he says it will go away. His protocol says to wait 8 weeks before proceeding IF Treatment Onset Central/Complex Apnea is present.
Please correct any of my assumptions. From what I see getting a Bilevel/ASV titration study SHOULD be a no-brainer.
Fred
RE: Soon to start CPAP - Question on dehydration - picante - 12-15-2018
OMG, Fred, that is enlightening!!
I'm looking at the records I have from the hospital. Both sleep studies are in one PDF file. Is there a place we upload files like that?
The respiratory events charts are on p. 7 and 41.
First study: I see zero CAs and 68 OAs, 168 resp. events (total sleep time was only 153.5 minutes).
Second study: 1 CA and 14 OAs, 91 resp. events (total sleep time was 185 minutes).
I can see why I was diagnosed with OSA. But everything's gone erratic on CPAP and it may be due to my chronic neuro-exhaustion from Myalgic Encephalomyelitis.
I'm worried about whether I'll be able to get a different machine soon enough to get insurance to pay for it instead of the one I've got, which I signed on to buy, not rent. Sigh.
RE: Soon to start CPAP - Question on dehydration - Gideon - 12-15-2018
Attach copies, the same way as you do with your charts, both sleep studies, and full copies, not just the summaries.
Redact your personal info of course. Put blank paper over personal info.
Based on what you say is on your Initial Sleep Study your doctor would be justified in waiting for 8 weeks to see if you adjust to the CA events that you are saying. There are studies that say if you have treatment onset central apnea there is a good chance that your body will adjust by 8 weeks. This is because the CO2 balance in your blood shifted to say that you do not need to breath and your body will adapt to the CPAP and settle on the new levels as being ok to breath.
Now you have seen what we are aware of and are trying to help all those who we feel will benefit by having an ASV.
When your doctor justifies ASV you should not have much trouble with getting the titration sleep study Sleeprider suggested. The purpose of that study would be to prove that ASV will provide efficacy to you by handling the CA events. The ASV machine is significantly more expensive and frequently the insurance company wants proof that it will work.
Fred
RE: Soon to start CPAP - Question on dehydration - picante - 12-15-2018
Oh dear, it's a PDF I've got, on a CD. I don't have software to redact it, and I don't want to print all 61 pages. I suppose I could print select pages and cross stuff out on them.
But probably not today! I've had severe brain fog all day -- usually it lifts by evening. Gut-aches have persisted all day, too. I don't understand why my symptom severity doesn't correlate well to my event counts. Is it more dependent on flow limitation? I've noticed my flow limitation peaks don't correlate to my events, and the 95% flow limitation stats don't correlate to AHI.
Quote:This is because the CO2 balance in your blood shifted to say that you do not need to breath and your body will adapt to the CPAP and settle on the new levels as being ok to breath.Yeah, I've been wondering if my CO2 has gone down relative to O2 from swallowing so much air; do other people have CAs triggered by aerophagia?
Quote:Now you have seen what we are aware of and are trying to help all those who we feel will benefit by having an ASV.Yes, I'm realizing what you're doing as we go. I'm starting from very little knowledge, and probably some incorrect info gleaned from medical techs.
When your doctor justifies ASV you should not have much trouble with getting the titration sleep study Sleeprider suggested.
The thing is, you're more aware by far than my doctor of my situation with CPAP. I need a doc who will look at my data. This one's not getting the job done, and that doesn't surprise me; after my titration study it was 10 days before his office person called to make my appointment, and he was scheduled up for 2 weeks.
RE: Soon to start CPAP - Question on dehydration - Gideon - 12-15-2018
If you don't mind email me a copy of your PDFs, I'll redact info and post on your behalf.
I do not believe that your swallowing air has anything to do with your CA. It definitely has to do with your discomfort.