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pressure plateau
#91
RE: pressure plateau
"Even though an APAP didn't manage my CA's..... has it, for others?"

fwiw, my short answer is sort of, but not well enough.

long answer: in 1987 I was diagnosed with moderate central apnea. no effective treatment was available. 30 years & 40 pounds later I was diagnosed with severe obstructive apnea, despite my history of central apnea & despite having 192 centrals to 204 obstructives in my latest sleep test. I was prescribed an apap.

the apap brought my ahi down from more than 72/hr to between 5 & 6 so somehow it reduced my central apnea as well as obstructive. the doc had no explanation.

that's not the end of the story though as I still felt lousy. I've since used asv & vauto machines. asv got my ahi down below 1 (so it did a better job of reducing all apnea including central) and was an improvement over apap but still not how I thought I should feel. unlike asv & like apap, vauto doesn't treat centrals so my vauto ahi is higher than with asv. however, it has different settings options than apap which result in lower ahi than with apap.

all this to say that while apap & bilevel aren't designed to treat central apnea, I experienced some fairly substantial reduction of central events with both.

although probably not relevant to your situation I'll add that I discovered I also suffer from periodic limb movement which the asv doesn't react well to, rapidly raising & lowering pressure support, which was exhausting (even though I was unaware of it). even though vauto ahi is higher than asv, I can better limit max ipap with it which helps reduce the disturbing pressure changes, leaks & aerophagia. the net result is I feel better with vauto. apparently for me the effects of the limb movements are more disturbing than the central apnea.
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#92
RE: pressure plateau
Sounds to me your titration is still high to the point that you don't feel good. So 30 years and 40 pounds heavier what did your sleep study revealed only severe obstructive? ANd your CA's were only a stones throw from your obstructives.......and you were prescribed an APAP, and no titration study was involved? Why not?

"bilevel aren't designed to treat central apnea"...........maybe not
I have to have a second sleep titration study with an ASV.... we'll see how it pans out.

"apparently for me the effects of the limb movements are more disturbing..... (don't know much about it) than the central apnea.
But stop breathing is disturbing.

do you sleep on your side?
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#93
RE: pressure plateau
if you're asking me, yes to side sleeping almost all the time, although in deep sleep I sometimes end up on my back, which never works out well. more leaks, more events.
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#94
RE: pressure plateau
(05-16-2020, 06:51 PM)sheepless Wrote: if you're asking me, yes to side sleeping almost all the time, although in deep sleep I sometimes end up on my back, which never works out well. more leaks, more events.


that's when you need the most therapy is in REM sleep.....use a partial tennis ball and you won't stay on your back
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#95
RE: pressure plateau
there was a night in the lab to titrate apap after the at home test. from what I hear, they titrate out obstructives & ignore the rest. even so, my titrated apap settings left me with oa, ca & h between anout 5 & 6 per hour. they knew about the ca but ignored it. seems to be SOP. I titrated asv & vauto on my own with help from forum members.
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#96
RE: pressure plateau
(05-16-2020, 07:06 PM)sheepless Wrote: there was a night in the lab to titrate apap after the at home test. from what I hear, they titrate out obstructives & ignore the rest. even so, my titrated apap settings left me with oa, ca & h between anout 5 & 6 per hour. they knew about the ca but ignored it. seems to be SOP. I titrated asv & vauto on my own with help from forum members.

WOW !

that's all I can say ! Thank you
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#97
RE: pressure plateau
I can't begin to tell you how many members of this forum obtained their first ASV out of pocket without prescription and demonstrated efficacy that could not be denied. Their doctors seeing the determination and success caved. I wish it wasn't like this, but the medical system is designed to make individuals that need advanced ventilators quit or fail, and then it blames them for the failure. Why is the CPAP failure rate so high? I think you know.
Sleeprider
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#98
RE: pressure plateau
When you're being treated by Dr. Dolittle, despite seeing things to act on, patients will fail to get proper therapy.

No, not everyone needs a machine more than APAP, but there's a certain amount of patients that do need BPAP/VAuto, ST, ST-A, or ASV. I do not think any one of these is for everyone. It would be nice to test via sleep study on several of these level of devices and determine which is most likely to help the patient succeed.

I am sure the test machines can do this, but almost all the time it's cookie cutter here's a CPAP, congrats and use it to meet compliance, see me in about a month and I bet you'll be doing fine. If you have any problems, you're doing something wrong. Either you are not using it right or enough. Here it is, get used to it. That was what I was told by the pulmonary doctor when on CPAP and BPAP both. The same doc that told me that also said I didn't need to go through bariatric surgery at 300 lb. but I needed to get serious about losing weight after the bariatric surgery got me down to 200. Apnea must mean deal with a bunch of stubborn doctors in some little known language.
Dave

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#99
RE: pressure plateau
(05-16-2020, 08:46 PM)Sleeprider Wrote: I can't begin to tell you how many members of this forum obtained their first ASV out of pocket without prescription and demonstrated efficacy that could not be denied. Their doctors seeing the determination and success caved.  I wish it wasn't like this, but the medical system is designed to make individuals that need advanced ventilators quit or fail, and then it blames them for the failure.  Why is the CPAP failure rate so high? I think you know.

Quote:Why is the CPAP failure rate so high? I think you know.
because they don't [EPAP] increase tidal volume and hence minute ventilation



you also said....
Quote:We have seen members that had an initially high CAI improve with time using CPAP. There are a certain percentage of people that can get good results on CPAP, even though it does not address central apnea. I think that is a large part of the reason insurance wants a fair trial of CPAP before failing.

Care to tie these two quotes together?

And why the long way around the barn?  

why would a Dr. want a patient fail to get the right therapy?  I think , and I heard someone say, here, whenever a patient is a challenge, they throw their hands up, or they, pulmonary Dr's, aren't sleep Dr's.

My Dr. is now saying it's medically necessary for titration second sleep study... And if they give the run around they gave sheepless, about "they knew about the ca but ignored it." or feed me the BS about "they titrate out obstructives & ignore the rest."?????

Titrate out obstructives... what does that suppose to mean? titrate, out.. obstrutives.... what does obstructives have to do with titration? Titration is two solutions....02 and blood concentration. 

I ain't playin with these people............... EPAP Minute ventilation (VE) is the quantity of air moved into and out of the lungs in a minute and dictates CO2 elimination from alveoli.

again I ain't playin with these people............

I'm not gonna let these people blow smoke up my a$$ ... bad enough the Ins. Co. could, and did. It ain't gonna happen again. Believe it.
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RE: pressure plateau
The titration I had for BPAP was in fact adjusting and recording the results to see where OA was lowest. CA was definitely ignored. How else can one justify saying I had need of plain BPAP with 24 OA to 124 CA and a single CA being 90 seconds.

Yes I am fully aware the insurance demands you fail CPAP before BPAP and then fail that to get ST, ST-A or maybe ASV. I understand not issuing someone a more expensive machine that does not need it. But the hard fight to move onward to a higher level device after proven is needed is the big problem.

PS The reason I believe so many fail CPAP therapy is that there is so little medical support to help the patient succeed. Add that you have to fight like mad to get the proper level of device you know you need. Then you have the doctor and insurance pushing back on getting anything other than vanilla CPAP because they're interested in supposedly saving a few dollars. Worst of all, the 3 amigos of doc, DME, and insurance all believe if you struggle you're not doing something correctly.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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