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palerider wrote: ↑

Sun Dec 01, 2019 4:40 pm

KatieW wrote: ↑

Sun Dec 01, 2019 3:46 pm

I have been trying to analyze why the first session was so good. Turning off EPR seems to be a factor, since it hasn't been that good for months.

Could it also be positional, temperature of the room, my sleepiness, nighttime meds, etc? Very curious. I got the overnight oximeter, will try that out tonight, for any clues.

You mentioned pain. Did your pain meds run out in the latter part of the night, causing restlessness?

Not severe pain. I have severe scoliosis, so prolonged sleep positions can bring muscle tightness, cramps in back, hips, legs. I get regular massages, walk, and do yoga so it is managed pretty well. I am not on any pain meds, except an occasional tylenol, but do take magnesium and potassium and my NP monitors my blood levels. A few nights ago, I started taking melatonin (300 mcg) and homeopathic arnica (for inflammation) at bedtime, to see if that might help. Perhaps their effects wear off after a few hours.

Using APAP Mode. Added pulse oximeter info.

I'm pretty sure I was awake for Sessions 1 and 2. APAP Mode feels more aggressive, and was quite uncomfortable at pressure of 13.

Regular mode no real change except maybe you couldn't fall asleep with it as easily maybe. Didn't really expect anything but just throwing harmless mild crap against the wall to see if something sticks.

You are supposed to see the NP today aren't you?

Pugsy wrote: ↑

Mon Dec 02, 2019 8:29 am

Regular mode no real change except maybe you couldn't fall asleep with it as easily maybe. Didn't really expect anything but just throwing harmless mild crap against the wall to see if something sticks.


You are supposed to see the NP today aren't you?

Ok, worth a try. Yes this morning, will report afterwards.

In all honesty...if it were me in your shoes I would be strongly discussing the ASV side of things.
It will take care of the immediate issue with the centrals (whatever the cause) and later on should you not need that side of treatment it can be dumbed down if need be. So no need to switch machines again.
All this assuming they think ASV would be safe to use in your situation.
I would hate for them to try to give you one of the ST machines that can also deal with centrals but doesn't do so great with OSA stuff and would force really high pressures all night long instead of the quick burst the ASV gives ONLY when needed.

Yes, that is my game plan. Thanks Pugsie for all your cautious and sage advice. I share your caution, but also want some relief, and sooner not later.

Pugsy wrote: ↑

Mon Dec 02, 2019 8:29 am

You are supposed to see the NP today aren't you?

Appointment with NP went well. I showed her my daily and monthly reports from Oscar, (she loved them) and she agreed that something is definitely going on, and sent a Referral to Tucson Pulmonary, and also ordered a Basic Metabolic Panel and Hemoglobin A1C. She will also be forwarding the Oscar reports with the Referral.

We did not get into specific treatment options, since that's the Pulmonologist's job. I said I had been reading up on Central Apnea and that the CPAP treatment is ASV. I asked if based on my heart history, would a ASV be contraindicated. She said since I have diastolic heart disfunction, and not systolic heart failure, my ejection rate should be normal. I had an echo in August in the hospital, and will get a copy of the report, to confirm this.

So, the wheels are grinding.....slowly.

KatieW wrote: ↑

Mon Dec 02, 2019 1:29 pm

the wheels are grinding.....slowly.

At least they are grinding. Nothing in medicine ever seems to move along quickly though.

Hopefully the referral won't be a horribly long wait but in the mean time you can still play around with your current machine a bit and see if you stumble upon something that seems to help the situation. I really don't see how you could hurt yourself with what little tweaks you can do with the current machine. Let your body be your guide...if you aren't comfortable with something...don't do it because it will likely end up making your already not so great sleep quality even worse.

Your poor sleep quality alone is enough to make you feel like crap...even without all the central stuff.

When I last posted, I was having Central Apnea Index of 20-30, using Resmed Airsense 10 Autoset For Her.

For 10 years, I had simple Obstructive Apnea, then in August, after pulmonary edema, the Centrals started, and increased. The earliest available appt with a Pulmonologist/Sleep Doctor was Feb 6 (2 months away).

I decided to buy a Resmed AirCurve 10ASV on-line, to see if it would treat the Central Apneas. With a lot of help from cpap friends (you know who you are), I was able to find settings that minimized aerophagia, but still treated the Centrals. I started using ASV on Dec 9, and it has been amazing. Last night's results posted here. Thank you, thank you, all.

I have been following a few ASV threads and it is pretty cool what these machines are capable of. I didn’t realize just how fast they react to stabilize breathing, it is pretty impressive.

Looks like there is still some room for refinement once aerophagia isn’t an issue but awesome to see how it has already stabilized all the centrals.

You still going to see the pulmonologist? Seems like it would still be worthwhile.

Geer1 wrote: ↑

Wed Jan 01, 2020 1:11 pm

You still going to see the pulmonologist? Seems like it would still be worthwhile.

Yes, absolutely.

Geer1 wrote: ↑

Wed Jan 01, 2020 1:11 pm

I have been following a few ASV threads and it is pretty cool what these machines are capable of. I didn’t realize just how fast they react to stabilize breathing, it is pretty impressive.

Looks like there is still some room for refinement once aerophagia isn’t an issue but awesome to see how it has already stabilized all the centrals.

You still going to see the pulmonologist? Seems like it would still be worthwhile.

Just where would you want to improve anything?

Geer1 wrote: ↑

Wed Jan 01, 2020 1:11 pm

awesome to see how it has already stabilized all the centrals.

You have no idea what you're talking about. :sigh:

Pugsy wrote: ↑

Wed Jan 01, 2020 3:35 pm

Just where would you want to improve anything?

Looks like the current settings are being maxed out consistently right now, specifically PS. Machine wants to run a bit more but letting it do so will likely cause worse aerophagia.

Does raising EPAP min, PS min or a combo of the two help reduce flow limitations with ASV similar to what you would do with a bilevel or is it best to just let them happen and let PS run wild to compensate the disruption on the following breaths?

palerider wrote: ↑

Wed Jan 01, 2020 5:26 pm

You have no idea what you're talking about. :sigh:

You have taught me well.

Great job Katie - it looks like the ASV was the right decision for you. Do you notice any difference in how you feel?