I feel terrible

StephenR · Post by **StephenR** » Sat Aug 08, 2015 2:24 pm

In April I went back on CPAP, this was the result...

Some folks suggested I try an ASV....it was wonderful.
My respirologist suggested I stay on it even though no doctor has prescribed it for me...

I have been on an ASV machine 3 months, felt OK...still not sleeping deeply but having some good days..
Thought I should heed some folks advice and go back on at least a Bi level machine, and so I am on a months trial on an Auto BiPAP...

I will let the pictures tell the story: The ASV....

A few days on the BiPAP:

I am in a bad state, just managing to function, but this is not good...not sure what to do..

Stephen

Julie · Post by **Julie** » Sat Aug 08, 2015 2:29 pm

FWIW, have you tried a soft cervical collar that would keep your head up, and therefore your airway more open, plus your mouth (if not lips) closed?

StephenR · Post by **StephenR** » Sat Aug 08, 2015 2:33 pm

Julie wrote:FWIW, have you tried a soft cervical collar that would keep your head up, and therefore your airway more open, plus your mouth (if not lips) closed?

Not aware I was mouth breathing, does that show on the leaks graph??...

Stephen

palerider · Post by **palerider** » Sat Aug 08, 2015 2:36 pm

I don't understand the regression back to an auto-bipap, which doesn't treat CSA, and can make CompSA worse.

StephenR · Post by **StephenR** » Sat Aug 08, 2015 2:41 pm

palerider wrote:I don't understand the regression back to an auto-bipap, which doesn't treat CSA, and can make CompSA worse.

Hi there PR...

It was because in my titration they did not find many centrals...I am however starting to wonder what to trust here..the machine data or the labs, who don't seem to
find anything wrong with me...while I continue to suffer...I have never had an official diagnosis pf Complex CA...or any CA for that matter, the docs and techs say I have OA and that is that...

So I understand you not understanding...hopefully all will be cleared up soon...or I may die....

Stephen

Julie · Post by **Julie** » Sat Aug 08, 2015 3:14 pm

I wasn't saying you did mouth breathe... it was more of an 'in case' thing (added as another bonus of collars).

StephenR · Post by **StephenR** » Sat Aug 08, 2015 3:16 pm

Julie wrote:I wasn't saying you did mouth breathe... it was more of an 'in case' thing (added as another bonus of collars).

ahhh, OK...thought maybe I was missing something.....
well I probably am given my state today...lol...

thanks Julie..

Stephen

tedburnsIII · Post by **tedburnsIII** » Sat Aug 08, 2015 3:24 pm

Why switch from the ASV? I don't get it.

StephenR · Post by **StephenR** » Sat Aug 08, 2015 3:27 pm

tedburnsIII wrote:Why switch from the ASV? I don't get it.

Here you go Ted...
palerider wrote:
I don't understand the regression back to an auto-bipap, which doesn't treat CSA, and can make CompSA worse.

Hi there PR...

It was because in my titration they did not find many centrals...I am however starting to wonder what to trust here..the machine data or the labs, who don't seem to
find anything wrong with me...while I continue to suffer...I have never had an official diagnosis pf Complex CA...or any CA for that matter, the docs and techs say I have OA and that is that...

So I understand you not understanding...hopefully all will be cleared up soon...or I may die....

Stephen

BleepingBeauty · Post by **BleepingBeauty** » Sat Aug 08, 2015 3:28 pm

palerider wrote:I don't understand the regression back to an auto-bipap, which doesn't treat CSA, and can make CompSA worse.

I agree with PR here. Not only did you go back to (auto)BiPAP, you switched brands, too. The ResMed ASV was obviously treating your apnea well (if the pic of that night posted is a typical night, in your experience). Why not go back to that machine?

As to what to trust, think of it this way: A sleep study in a lab is a one-night snapshot; we don't sleep the same every night, even in our own bed and in our own surroundings. I'd trust the machine data on an ongoing basis more than a one-night sleep study.

If it ain't broke, don't fix it.

OkyDoky · Post by **OkyDoky** » Sat Aug 08, 2015 3:29 pm

Your AHI looks great on the ASV. I'm like PR and wondering why the switch. Was it because of fragmented sleep or because of cardiac conditions that you switched?

StephenR · Post by **StephenR** » Sat Aug 08, 2015 3:34 pm

OK< OK< OK...lol......

Look some experienced folks on various forums thought I should not be on ASV...

I thought they may be right, so I would try BiPAP...they were wrong, I feel like shit...

so I promise I will go back on my ASV...Thanks for the push...

Stephen...

palerider · Post by **palerider** » Sat Aug 08, 2015 4:08 pm

StephenR wrote:OK< OK< OK...lol......

Look some experienced folks on various forums thought I should not be on ASV...

I thought they may be right, so I would try BiPAP...they were wrong, I feel like shit...

so I promise I will go back on my ASV...Thanks for the push...

Stephen...

the real question is... did you feel better on the asv than you do on the bipap?

I remember you initially said the asv was wonderful, then you started restricting it's ability to treat the centrals, and you said you felt worse, and then you've changed to something else, and it seems you feel even worse...

I admit to probably missing a lot of the nuances, but what I would STRONGLY suggest doing is starting a notebook, and list the settings of the machine, and then how you slept, a sleep diary such as this is often very helpful to people that are trying different things, because it's nearly impossible to remember how you felt a month ago on different settings, compared to today. etc.

out of curiosity, who and were were these experienced people that recommended you stop the ASV?

StephenR · Post by **StephenR** » Sat Aug 08, 2015 4:26 pm

PR wrote:

the real question is... did you feel better on the asv than you do on the bipap?

I felt better, was having a few good days, actually exercising again...

I remember you initially said the asv was wonderful, then you started restricting it's ability to treat the centrals, and you said you felt worse, and then you've changed to something else, and it seems you feel even worse...

I was not trusting the machine data, after the titration "showed" I had few centrals did not trust the machine......poor old brain is very confused now...trying to find a middle path here..

I admit to probably missing a lot of the nuances, but what I would STRONGLY suggest doing is starting a notebook, and list the settings of the machine, and then how you slept, a sleep diary such as this is often very helpful to people that are trying different things, because it's nearly impossible to remember how you felt a month ago on different settings, compared to today. etc.

Will do, I have been making notes in sleepyhead, so will start a paper notebook too..

Stephen

palerider · Post by **palerider** » Sat Aug 08, 2015 4:41 pm

StephenR wrote:Will do, I have been making notes in sleepyhead, so will start a paper notebook too.

well, notes in SH are good, I've never used the note taking facility myself, but if they're easy to go back and review, then that could work well enough.

the point is to be able to say "well, looking back, I said I felt good here, and here, and these were the machine and settings, and I felt worse here and there, and those were the machine/settings... and get a better picture for yourself of what is working, and what isn't.

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