Where did all the help GO??

My outlook on XPAP Machines:

CPAP = Riding a two wheel bike with training wheels. Straight forward and simple.

APAP = Riding a two wheel bike. More complex but still simple, with a little help.

BPAP = Riding a two wheel bike, even more complex to set up, not simple, designed for higher pressure users or special needs cases.

ASV'S = Riding a Racing bike or Extreem Riding, Many settings complex, made for VERY Special needs, more work to dial in correctly.

KISS = All can treat you for Sleep Apnea, just because each level of machine is more adjustable isn't a sign that it's what you need. Status is better served by using what helps you the most, jumping to a more complex machine than you really need isn't helping you much if you can't use it.

Many people anymore think because the machine costs more it's better at treating you, Not so it's is harder to dial in to your needs, and in some cases not what you need at all. A machine that fills your needs with the best results and piece of mind is a good thing.

On machines that use Encore software, the dailies are all I go by, I don't need to monitor 10 graphs for treatment just leak rate, AHI broken down, Pressure, and use. Jim

I'm not complaining about your post, I'm just stating what I think when I try to help others, and If I don't use the same type of machine and software, I usually have little useful comment.

I am trying:

I found some else with what I try to explain:

" I noticed the two and a half months I did use the PAP was that I had to learn to exhale more strongly. When I mentioned that to my sleep doctor in 2006 when I agreed to try PAP again I mentioned that as one of the good things about PAP, at least I thought it was, and he told me no, it wasn't a good thing, that the forcing the stronger exhalation would tire me out and interrupt my sleep."

That is what I am running into.

Now if I got this right:

positive airway pressure (epap)= EPAP is an acronym that stands for "expiratory positive airway pressure." For a person on a ventilator, this would refer to positive airway pressure being provided while they breathe out.

inspiratory positive airway pressure (IPAP),
that applied during the inspiratory phase of mechanically assisted ventilation. this would refer to positive airway pressure being provided while they breathe in.

Seems crazy to put my Min EPAP at 10cm and my Max EPAP at 15...

And I cannot find my IPAP Min/Max unless that is Pressure Support??

Also I am now learning how to use and read Encore Basic.

Thanks.

Rich

racprops wrote:I am not complaining..well not much, BUT when I first joined I was getting lots of help and support, now I cannot flag down a cab.

I have a couple of new threads running with deeper questions and really need help understanding things and I am not getting any answers/help.

I keep waking up and ripping off my mask as I feel suffocated...

I really need help reading the reports of sleepyhead and help fixing this.

What’s up??


Rich

industry trolls

Todzo wrote:

racprops wrote:I am not complaining..well not much, BUT when I first joined I was getting lots of help and support, now I cannot flag down a cab.

I have a couple of new threads running with deeper questions and really need help understanding things and I am not getting any answers/help.

I keep waking up and ripping off my mask as I feel suffocated...

I really need help reading the reports of sleepyhead and help fixing this.

What’s up??


Rich

industry trolls

Todzo,

What the heck are you talking about? I don't see any posts on this thread that deserved that type of response.

49er

racprops wrote:positive airway pressure (epap)= EPAP is an acronym that stands for "expiratory positive airway pressure." For a person on a ventilator, this would refer to positive airway pressure being provided while they breathe out.

inspiratory positive airway pressure (IPAP),
that applied during the inspiratory phase of mechanically assisted ventilation. this would refer to positive airway pressure being provided while they breathe in.

Seems crazy to put my Min EPAP at 10cm and my Max EPAP at 15...

It doesn't seem crazy to me.

EPAPmax=15 is the default setting. The official protocol recommends leaving it alone.

EPAPmin is chosen to minimize obstructive events. At a lab titration, they start it low and increase until obstructive events are resolved (though not if they see an increase in central apneas).

And I cannot find my IPAP Min/Max unless that is Pressure Support??

I just got titrated on one of these machines last night, so I've been doing as much research this morning as my sleep-deprived brain can manage.

Here are the major settings on Respironics ASV machines (BiPAP autoSV Advanced):

EPAPmin = minimum pressure you will experience during the night, provided during exhaling (not sure how Bi-Flex affect this)
EPAPmax = maximum expiratory pressure it will provide
PSmin = minimum "pressure support" it will provide (IPAP-EPAP); in theory this goes all the way down to 0 (essentially APAP since IPAP=EPAP and EPAP can vary as needed)
PSmax = maximum pressure support
Max pressure = maximum pressure limit (IPAP will never go above this even if EPAP+PSmax is higher)

There's no IPAP min/max as such, but it boils down to IPAPmin = EPAPmin + PSmin and IPAPmax = EPAPmax + PSmax (but no higher than max pressure).

So the machine will be adjusting both EPAP and IPAP and the difference between them throughout the night.

I don't fully understand exactly what it does in response to which events, so I plan to try the prescribed settings for a while before tinkering, and I'll be coordinating any tinkering with my doctor.

Given your question about your machine's basic operation, I would echo others' concern about fiddling with the settings on your own.

Well as there is almost no one that can help I am kind of lost.

My Doctor has a cranium anal inversion and is not willing to work WITH me on these problems.

I kind of fear he is also in over his head with my problems.

Rich

racprops wrote:Well as there is almost no one that can help I am kind of lost.

My Doctor has a cranium anal inversion and is not willing to work WITH me on these problems.

I kind of fear he is also in over his head with my problems.

Rich

Physician Specialist Glossary
Phoenix Metropolitan Area
WebMD has identified 79 Sleep Specialists in the Phoenix area (2 counties and 231 zip codes).

http://doctor.webmd.com/local/arizona/p ... alists.htm

racprops wrote:My Doctor has a cranium anal inversion and is not willing to work WITH me on these problems.

I love the mental image, and I totally understand the dilemma.

Until you find a doctor, the key will be slow, methodical adjustments. Here's the protocol PR recommends for sleep labs.

Note that even they go slowly: they watch for at least 20 minutes after making a single 1-unit change. Obviously you can't do that while you're asleep, so if you were doing it on your own you'd probably have to make a single 1-unit change per night (after awaking and reviewing the previous night's data). At that rate it would take you about 24 days to do what they would do in 8 hours.

But even that's still not risk-free for you, since a lab is also monitoring you for dangerous conditions, like excessive desaturations or cardiac emergency. You can't replicate that on your own.

Well a couple of good things, I have a starting point and I have a recording Ox meter.

Rich

sawinglogz wrote:

racprops wrote:My Doctor has a cranium anal inversion and is not willing to work WITH me on these problems.

I love the mental image, and I totally understand the dilemma.

Until you find a doctor, the key will be slow, methodical adjustments. Here's the protocol PR recommends for sleep labs.

Note that even they go slowly: they watch for at least 20 minutes after making a single 1-unit change. Obviously you can't do that while you're asleep, so if you were doing it on your own you'd probably have to make a single 1-unit change per night (after awaking and reviewing the previous night's data). At that rate it would take you about 24 days to do what they would do in 8 hours.

But even that's still not risk-free for you, since a lab is also monitoring you for dangerous conditions, like excessive desaturations or cardiac emergency. You can't replicate that on your own.

sawinglogz wrote:

racprops wrote:My Doctor has a cranium anal inversion and is not willing to work WITH me on these problems.

I love the mental image, and I totally understand the dilemma.

Until you find a doctor, the key will be slow, methodical adjustments. Here's the protocol PR recommends for sleep labs.

Note that even they go slowly: they watch for at least 20 minutes after making a single 1-unit change. Obviously you can't do that while you're asleep, so if you were doing it on your own you'd probably have to make a single 1-unit change per night (after awaking and reviewing the previous night's data). At that rate it would take you about 24 days to do what they would do in 8 hours.

But even that's still not risk-free for you, since a lab is also monitoring you for dangerous conditions, like excessive desaturations or cardiac emergency. You can't replicate that on your own.

I need to chime in here and note the forum remains a pretty helpful place .. but you need to help yourself.

I've recommended to others and now I'll repeat it for you ... try to find a sleep lab in your area that is willing to do a sleep study "Pro Bono" for free. They are out there. It's one of the things that I look for in labs with which I have dealings. If they don't want to help people who can't pay they are too interested in the money and not in the patient aspect of the business.

I've also recommended to others and now I'll repeat it for you ... (and I *KNOW* that you've heard it from others) ... do NOT make changes every bloody night!! Part of the "magic" of the ASV therapy is that it helps train your body to breathe in a regular pattern. It is pretty common to have someone with a high AHI (20 to 30) score slowly (over several months) watch their AHI score drop to below 5. And that is all without changing settings. It requires TIME for that type of conditioning to take effect. I repeat ... that training requires consistency and time.

But because of you heart related issues, I am VERY reluctant to offer advice on settings for your ASV unit. Getting it wrong can seriously mess up someone with heart related health problems. We are not doctors .. and without a proper sleep study we have no CLUE where to start ... and even a doctor would not "go it blind", since there are serious health implications (with heart patients).

A Pro Bono Lab would be a god send.

Thanks I will call around.

Rich

racprops wrote:... A Pro Bono Lab would be a god send. ... Thanks I will call around. ...

Hopefully you will find one in your area. It's not that we don't want to help. It's just (as you are finding out) an ASV unit is really hard to determine what the best pressure might be. You can set it up on your own, but it will be a tedious affair. We won't leave you "high and dry". It's just if at all possible, you also need that titration. From there we can help you tweak settings.

I'm really not trying to be a butt about this. I just want what's best for you. So, keep us posted.

Well I know I have caused some concern.

But I have listened and I think I have done a fair job.

Last night was one of the best, and I was able to keep the mask on almost all night.

The reports of the other nights also show these kinds of reports for the time I was able to keep the mask on.

I was having problems keeping it on...

I see long periods of no events and low pressure and good breathing.

I see an AHI reading of 13.71.

I see great progress.

Does anyone see any problem??







Rich

I see several breaks in therapy lines...are you by any chance also spending a lot of time wearing the mask with machine on while awake? Like the time frame starting at 12:30 and lasting till just before 1:15 and again at the end of the night and even that 4:15 cluster or the cluster between roughly 2:30 and 2:45 then the wake up and turning off the machine.

If you are/were awake for those periods of time those may be awake breathing artifacts.

Pugsy wrote:If you are/were awake for those periods of time those may be awake breathing artifacts.

I was just wondering about that theme after my ASV titration.

Wouldn't it be nice if there were some way to tell the machine "I'm awake right now, stop freaking out"? As a technique to fall asleep I tried to slow down my breathing (slow inhale, slow exhale), but the ASV kept wanting me to breathe faster. I wish I could have told it, "I'm awake right now, just watch and learn for the next 4-5 breaths."