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Todays the big day [First night with Cpap]
#71
RE: Todays the big day [First night with Cpap]
Update. I'll consider this thread more of a journal for me to look back on.

Tried the 5cm, EPR off. Hung up the mask and went to sleep without it once again.

This thing is giving me so much grief. I'm wearing it right now at this computer and I hate it. My breathing is so much "free-er" and open without this thing on my face. Perhaps a different mask will help. I've worn masks for painting that were so comfortable that I could wear them all day.

The good news is that I did work up the ambition to call for the sleep report. I now see how important that is. The bad news is that no one answered the fone and I will have to wait. But I am gonna get that report!

For all I know, this machine may be a ruse by the insurance company. Perhaps they knew it was mostly central all along and gave me an $800 machine instead of a $3,000 machine, hoping for the slim chance that the $800 machine will work.

I don't want the scuzzballs taking my machine away in case this is actually what I need. I know they can't wait to barge in here and wheel it away. So I'm taking the whole thing to the computer desk and I'm gonna sit here and get my 4 hours in awake if I have to.

But yeah. I think the 2 most important things now are getting that report and trying another mask.
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#72
RE: Todays the big day [First night with Cpap]
(11-10-2018, 01:31 AM)Broomstick Wrote: So I'm taking the whole thing to the computer desk and I'm gonna sit here and get my 4 hours in awake if I have to.
That's exactly what you should be doing while you sort out your problems. Your problems won't go away if the machine is taken away. But you still need to try and sleep with it and make sure to start complaining to your Doctor about not being able to sleep due to all the CA events your having.
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#73
RE: Todays the big day [First night with Cpap]
Going with the theme.

The normal path to manage central apneas because of insurance rules is to 
FAIL CPAP
FAIL BiPAP
FAIL BIPAP w timed backup 
Succeed with ASV

It may be that this machine will work for you but the bulk of your Apneas are Central Apneas and the machine we expect to work the best is the most expensive, the ASV.  We try other things while you are struggling because we have seen some degree of success.

The thing is to complain, pester, and discuss with your doctor that your current treatment is not eliminating your central apnea and what is the next step.  I understand that ASV is one of the best treatments for central apnea so how do we get there.  I understand that insurance limits choices, what can we do about that?  Regardless THIS treatment is just not working for me and I am trying really hard. It's so bad I can't wait for the followup.

This needs to be repeated pretty much with each of your discussions with your doctor,  I would say this needs to be relayed to your Dr every 1 - 2 weeks, and not wait for the followup.   Got the idea.
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#74
RE: Todays the big day [First night with Cpap]
Thanks to both of you for the important info.

Failed again. Kept coming close to sleeping when I was "zapped" back awake, presumably due to central apneas or at least sleep onset central apneas.

I wondered if I was doing myself more harm than good by giving myself 30 sec pauses in breathing when I might otherwise have less.

Regardless, I woke up yet again feeling like I suffocated much of the night and woke up from an intense dream.

I feel like I suffered enough at this point am ready for something that actually works now. No more games with my health, please insurance.

It scares me to think how long this has been going on. I hope I can make it to the finish line without my heart failing me now.
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#75
RE: Todays the big day [First night with Cpap]
(11-10-2018, 12:29 PM)Broomstick Wrote: Thanks to both of you for the important info.

Failed again. Kept coming close to sleeping when I was "zapped" back awake, presumably due to central apneas or at least sleep onset central apneas.

I wondered if I was doing myself more harm than good by giving myself 30 sec pauses in breathing when I might otherwise have less.

Regardless, I woke up yet again feeling like I suffocated much of the night and woke up from an intense dream.

I feel like I suffered enough at this point am ready for something that actually works now. No more games with my health, please insurance.

It scares me to think how long this has been going on. I hope I can make it to the finish line without my heart failing me now.

I agree it's time to go back to your doctor with your results and say 'this is a dog's breakfast'

All the best.
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#76
RE: Todays the big day [First night with Cpap]
(11-09-2018, 12:08 AM)Broomstick Wrote:
(11-08-2018, 09:22 PM)Sleeprider Wrote: So far, your apnea is all central.  The solution is to try low, fixed pressure without EPR.  The honest impression I have is that giving you advise is like talking to a broomstick.  You either ignore what is suggested, or just have better ideas of your own.  Your commitment to make the therapy work appears to be very low based on low usage hours, but when we look deeper, there is clearly a lot of distress that makes it uncomfortable.  

You need help to get the therapy you need, but you need to persuade your doctor, the problem is not your commitment and effort to make this work, but the fact the CPAP therapy is not tolerable,and you need something else. Your ability to communicate this effectively is working against you. Somehow, you need to get a titration study, and you need to sleep during the test.  From what I see, these obstacles may he insurmountable.  I hope someone on the forum can give you advise in a way you can make it work, but so far, that person has not been me.

My brains are fried. I thought I followed exactly what was suggested. I lowered the thing to a constant 5 and still had problems. Was I supposed to keep at it? At the same time, I'm picturing a doctor telling me "Why the hell did you change the settings?" and me responding "Well the internet said..."

So yeah, I've been flipping back and forth between what I've been told here, what a doctor prescribed, and my own ideas because I'm desperate to find SOMETHING that works.

But whats really enraging me (and this is directed towards the insurance/compliance) is that I consider what I'm doing to be compliant. As far as I'm concerned, I AM trying. OK, so I "slept" for 1 hour and now air is blowing at me at 15cm. Resetting it back to 5cm will make me feel air starved after that. I'm too disoriented and tired to figure out any settings. Like, "OK I tried and the thing beat me again. I had enough torture for one day. Time to put it away and try again tomorrow." To me, THAT should be considered compliant and no one should be rushed to make it work immediately or have it taken away. 

They can wheel it the hell out of here because its looking like I need that ASV machine from what I've read.

In the meantime, I'm gonna try the machine at a constant 5cm with EPA, or whatever its called, off, as prescribed by the Apnea Board. And I'm gonna try my best to continue with it for the entirety of my rest. But I'm not hopeful though and am sure this isn't going to work out.

In my defense, this low pressure approach was a screening method tht sometimes works, but is certainly not a guarantee to resolve CA.  Failing low fixed pressure means that CPAP is not likely to work, and as others have said, you will need to convince your doctor that you want to make the therapy work, you have tried all the options, and it's time to move on to something else.  i actually have a pretty good track record of coaching members through these difficult times when nothing works, and moving towards ASV which almost always does work.  The difficult part of your case was simply getting enough use to see what is going on, and to be honest, we still don't have a good segment of sleep to look at that shows central apnea.  you apparently don't tolerate the sleep studies, so it is going to be hard for a doctor to diagnose your problem, and demonstrate the efficacy of an alternative like ASV.  Without the diagnosis and demonstration of efficacy insurance will not pay. Your option is to either learn to tolerate this CPAP enough that your use demonstrates it can't work, and to prepare you to sleep in a sleep titration study, or to self finance a new or used machine.  Using the machine while awake will meet compliance requirements so insurance will buy the CPAP, but it does not provide evidence of the underlying problem.  Instead it will show acceptable AHI with minimal use.  

Unless you can convince your doctor to schedule a titration study, and then you actually sleep and have a lot of CA, there is nothing I or anyone else can suggest other than self treatment, because insurance will not pay without evidence that meets their criteria.  Very frustrating, and I understand how you must feel about this Catch-22.  You can't sleep with CPAP, and can't be approved for an advanced therapy unless you sleep.
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