10 Years of Absolute Misery

[SorryIamNormal]

Here are my sleep studies.  The only way to get around the file restrictions was to take screenshots.  It was the best I could do.

[SorryIamNormal]

Last study

[Sleeprider]

Interesting. Your original sleep study showed all central apnea and hypopnea and the followup showed resolution of the apnea with CPAP but with awful sleep efficiency of 63%. and a PLM of 15/hour I can see the doctor patting herself on the back from here as she saves Medicare treatment money. Bottom line is you rarely have more than one consecutive minute of undisturbed sleep. Wonderful.

Wanna try the ASV?

[SorryIamNormal]

HELL YES.  Speaking of limb movement I was told by one dr, well more like treated with clonazepam, then another told me it wasn't significant enough, and yet another I was treated with Ldopa (parkinson drug) that I absolustely hated and did not continue.  Over time my entire bed will move.  I've also videotaped myself with an IR camera to try to tell wth is going on at night.

[Sleeprider]

I'm going to start this by posting the titration protocols by Philips and Resmed.  I'm not so thrilled with the Philips approach, and am a lot more familiar with Resmed ASV.   First image are the menu options for the Philips BiPAP SV Auto Advanced (control knob + ramp button), followed by the Resmed titration protocol and Philips Titration method.  We'e going to toss out everything from CPAP and assume your problem is predominately central apnea, so we will probably need to increase EPAP pressure over several sessions to get it right.  You should expect to experience a much different feeling from ASV than CPAP, in fact it's not going to be close.  The ASV is going to try to boss you around, and if you feel like it's too much, you need to take control by literally blowing back forcefully.  This machine is going to keep your airway secure against obstruction with relatively low pressure, but if it senses you are not taking a large enough breath or taking breaths at your normal rate it is going to step in with some very aggressive pressure support to make you breathe.  You are in control, but it takes some getting used to. 

You are going to use the following settings to start.
Mode BiPAP Auto SV
EPAP min: 6.0
EPAP Max: 15.0
Max Pressure: 25.0
PS min: 2.0
PS max 15.0
BiFlex: 1.0
BPM Auto
Ramp: Off
All alarms 0 or off
Other settings default:

Good luck. Be sure all prior data is purged and use an clean SD card so we can see what happens.  Don't be discouraged if it is a rough start.

[SorryIamNormal]

Ok I will try all of these settings tonight.  My Res AutoSV didn't come with an SD card so I will use a new one.  I have been looking on offerup for the Vauto.  I found one for 500 with 500 blower hours and a free mask.  You mentioned that the AutoSV isn't the exact model of machine that I need?  I am willing to buy the Resmed Vauto and then  hopefully in the new few months I can get the right Dx from the DR and get the right machine (then I can sell the old one).

[SorryIamNormal]

Well that felt like I was being waterboarded last night.  I'm switching back to regular cpap (for the remainder fo the nigght) because I've suffered enough.  Here is the data.  I don't understand why I don't have 'flow limitations' unless I am missing something.

[Sleeprider]

As you can see the machine stepped in with high pressure support over some substantial periods of time and created breaths for you, especially 4:20 to 4:50. Each of those black hash marks at the top of the event bar is a machine initiated breath, and I didn't expect to see so many. Although AHI is zero, how you feel counts for more, and "feeling waterboarded" was not the objective. For complex apnea patients, this feeling passes with adaptation.

If you want to continue trying the ASV, we can find some settings that will not be as aggressive, but we learned from this experiment that you do not have obstructive sleep apnea at EPAP pressure less than 6.0. This strongly suggests that your current machine is very much over-titrated to high pressure. It might be interesting to turn down the PS max to 8.0 which may allow some central apnea, but will significantly reduce the feeling of the machine overwhelming your with pressure support. For soft settings:
EPAP min 6.0
EPAP max 9.0
PS Min 3.
PS max 8.0
BPM Auto or turn it down to 10 BPM

Your normal respiration rate is about 14 per minute. If we turn the backup down to 10, then it won't intervene with an automated breath unless you have stopped breathing for nearly 4-seconds longer than your normal breath rate. Just a thought.

The Aircurve 10 Vauto is the machine I use and is the gold standard machine for obstructive apnea. It has the tools needed to address obstruction, hypopnea and flow limitation, comfortably and effectively, and I suspect you will notice a big difference from your Dreamstation. It will feel more familiar than using ASV, but part of the "toolbox" is the use of some pressure support. Having separate pressure for inhale an exhale is more comfortable and natural for most people, and the pressure support overcomes any airway restriction that otherwise takes increased respiratory effort by the patient.

With the Vauto, a range of pressure is set along with the pressure support and the machine should not feel abrupt or like you're being "waterboarded". I don't know why you use a fisxed CPAP pressure of 14, and if it is because you don't tolerate pressure changes, then this may be a problem using the Vauto. With your current CPAP settings, would start the Vauto at a EPAP min of 8.0, Maximum pressure of 15.0 and PS 3.0. That will mean a starting pressure of 11/8 and a maximum pressure of 15/12.

[SorryIamNormal]

I am having serious nasal congestion after using this machine.  And have not experienced this since several years ago.  I had sinus surgery in July and it has been smooth sailing ever sence.  I mean my sinus physically hurt.  This thing smelled like air freshener when I got it.  Basically I'm trying to figure out if these pressure changes can cause this or my machine needs some kind of special cleaning. 

Last night after I made that post I had to take a long hot shower to get my nose open and for the pain to calm down.  And like I say haven't experienced anything like this in years.  I also switched to the less aggressive settings like you suggested.

[Sleeprider]

We don't know what this machine was exposed to, and I share your sensitivity to fragrance, deodorizers and disinfectants. With 8000 hours it is far from a newer machine and may have even been exposed to smoking or a musty environment. I have sometimes set a machine down on a floor at hotels where a side stand was not available and experienced a lingering smell just from what was taken from the carpet. Yuck!

We can only hope that the smell will dissipate with use. Did you use your own tube or the one that came with the machine?