Where did all the help GO??

racprops wrote:
After being told how complex ALL the setting are with my machine, and all the other efforts by my Doctor to keep me from see how simple it is to set up this machine is suppose to be learning there are ONLY 5/6 settings ..I find that very misleading...near lieing.


So I am questioning all

Rich

I'm confused, Rich. If the settings for your treatment are so simple then why are you having so much trouble? Earlier you said "this is not rocket science." I actually think it may be even MORE complex than rocket science because one of the elements of the treatment is YOU, a unique human being unlike any other human being with a unique body and unique problems. Mathematically (and I know this may be overstating it as many of the combinations would be unlikely) with 6 variables, if there were , say, 10 different possible settings for each variable (and I believe there are more!,) there would be One Million possibilities, and maybe only 1 or 2 are optimal for you. I don't see that as simple.

Blessings,

Kate

Kate,

+1

How did you read my mind?

jdm2857 wrote:Kate,

+1

How did you read my mind?

LOL.. Maybe because I'm originally from North Jersey! We Jersey folks are all geniuses

Grew up in West Orange.

jdm2857 wrote:Grew up in West Orange.

Morristown for me! The movie "The Oranges" has been released on DVD this week I'm looking forward to seeing it

Kate M wrote:

jdm2857 wrote:Kate,

+1

How did you read my mind?

LOL.. Maybe because I'm originally from North Jersey! We Jersey folks are all geniuses

+1

Well:

These are all the setting it has:

Max Pressure

EPAP Min and Max

PS Min and Max

BPM (Usually auto)

TI if not using BPM on auto.

Flex type/BiFex settings 1, 2, 3.

And a few lock outs and alarms...

Here is the setting currently in use:

Max Pressure= 25cm

EPAP Min and Max 9/15

PS Min and Max 0/15

BPM Auto

BiFex settings 3. (This one only has four 0, 1,2,3)

Now that is really really super hard...

I agree it is the difference setting were the magic will happen.

I am coming to relies it has to do with what causes my complex Central apneas.

I am told they are caused by CPAP, constant air pressure, or what is called CPAP induced centrals.

OK But how?? Is it:

I cannot exhale against the pressure?

That I get too full during the inhail from the extra air pushed in by the pressure??

Is it that the CO2 that normally triggers breathing is swamped or misplaced?

And what causes my Nypopneas??

It seems my Obstructive apneas are taken care by even 6.5 cm pressure, in fact my highest ready has only been 5 OAs on a higher base pressure..

Rich

racprops wrote:Well:

These are all the setting it has:

Max Pressure

EPAP Min and Max

PS Min and Max

BPM (Usually auto)

TI if not using BPM on auto.

Flex type/BiFex settings 1, 2, 3.

And a few lock outs and alarms...

Here is the setting currently in use:

Max Pressure= 25cm

EPAP Min and Max 9/15

PS Min and Max 0/15

BPM Auto

BiFex settings 3. (This one only has four 0, 1,2,3)

Now that is really really super hard...

I agree it is the difference setting were the magic will happen.

I am coming to relies it has to do with what causes my complex Central apneas.

I am told they are caused by CPAP, constant air pressure, or what is called CPAP induced centrals.

OK But how?? Is it:

I cannot exhale against the pressure?

That I get too full during the inhail from the extra air pushed in by the pressure??

Is it that the CO2 that normally triggers breathing is swamped or misplaced?

And what causes my Nypopneas??

It seems my Obstructive apneas are taken care by even 6.5 cm pressure, in fact my highest ready has only been 5 OAs on a higher base pressure..

Rich

Repeat: Where is your Statistics Report from SleepyHead:

"CPAP Statistics as of (current date)"

"Changes to Prescription Settings"

How can anyone possibly address your complaints if we don't know in detail what you have been doing with your machine since you started home therapy? Not a narrative - the whole table. It is easily accessible.

Copy it and post it here.

Also, I don't see whether you have ever posted your Sleep Study Report on cpaptalk. You ought to post that, in its entirety, too. Or provide the url to which you previously posted it.

Nate

Here you go:

I think I am so frustrated by how upside down all of this is.

I have to get the most advance machine: a complex breathing machine and I have to get used to it…It should be able to work with me right out of the box…

Where a lot of people get a simple CPAP and are cured the next day. (well nearly)

The sleep study done under the worst conductions gets fantastic results, and once I get a machine and use it at home I get horrorable results.

Upside down.

Rich

[quote="racprops"
Where a lot of people get a simple CPAP and are cured the next day. (well nearly)
Rich[/quote]

Where did you get that idea? From what I've read on this forum its rare for someone "to get a simple CPAP and are cured the next day". You can't 'cure' it either, it can be treated/managed

mgaggie wrote:

racprops wrote: ... Where a lot of people get a simple CPAP and are cured the next day. (well nearly) ...

Where did you get that idea? From what I've read on this forum its rare for someone "to get a simple CPAP and are cured the next day". You can't 'cure' it either, it can be treated/managed

Worse, it's COMPLETELY wrong. SOME people - but not a lot - see benefit the very next day. But a TON of people (perhaps most on this forum) go through a LOT of effort to make it work. Studies show that many (almost 50%) people prescribed an xPAP device just give up and put the xPAP device in the closet.

So, you are having problems. Big whoop! Many/Most of us do. It's taking you a lot of time and effort. And a lot of us put a lot of time and effort into getting decent sleep.

We've been making a lot of (consistent) suggestions. In particular, you've been changing things pretty quickly and NOT listening to the HARD EARNED advice from the members of the forum. And then you have the gall to ask "Where did all the help GO??" ... REALLY? ...

Like it or not, we are NOT doctors. We can and SHOULD NOT play "doctor" in your case. We have attempted to help, but we have been pretty consistent in letting you know that with central apnea and with heart issues you *REALLY* need the involvement of a doctor.

Now, I'm sorry if that seems as if it's not fair. But there's a lot of collective experience here. We are not being difficult. In fact, we are trying to help you. And in your specific case seeing a doctor and getting a titration with an ASV unit is part of the process.

JohnBFisher wrote: Where did you get that idea? From what I've read on this forum its rare for someone "to get a simple CPAP and are cured the next day". You can't 'cure' it either, it can be treated/managed

Worse, it's COMPLETELY wrong. SOME people - but not a lot - see benefit the very next day. But a TON of people (perhaps most on this forum) go through a LOT of effort to make it work. Studies show that many (almost 50%) people prescribed an xPAP device just give up and put the xPAP device in the closet.
[/quote]

Very true.

I noticed a real improvement after the sleep study, but that didn't mean that I was immediately normal, or that it has been easy. I have been fortunate not to have some of the problems that others do. But I did spend the first 6 weeks cursing at my mask in the middle of the night.

I have been using cpap now for just over a year. My ahi is excellent, but I am still struggling to get more than 4 hours straight and more than 6 hours per night with my mask ON. I take it off in my sleep due to some problems that seem minor but I can't seem to clear up. I have also fallen asleep without my mask on many times. I just missed a complete night a couple nights ago. I regret it. I woke up with a headache, so my punishment was quick.

I consider 5+ hours straight to be very good. Over 6 hours straight is a great night. Over 7 is awesome. I think I have had maybe 10 awesome nights in a year.

That said, OVERALL, I am doing much better than before treatment. Lots of improvements in my longterm health and my daily health. I feel better. And I honestly don't feel I have fully mastered it, so I know it can get even better once I really master it.

I know it is easier to keep at it when you have at least SOME improvement to keep you going. And having good nights and occasionally an excellent night will keep you striving for consistent great nights. My first awesome night was just about a year ago when I slept over 7 hours straight. I can't remember ever doing that before. And I felt great the next day. Like I was drinking energy drinks, only I hadn't. Nights like those are rare, but they sure do inspire commitment to keep trying.

Mgaggie, JohnBFisher, zoocrewphoto, your right.

That was a bit silly and major dumb of me…IF everyone got CPAP machine and got well, then there would be no need for this web site..it is self-evident.

My very bad.

I had a very bad night and as this does seem to be like trying to hit a moving target from a moving truck on a very bad road I was a little freaked out and upset.

I am sorry.

Rich

Good morning Racprops.

I've been semi-following your thread and haven't found anything I could contribute to, until this morning regarding dental appliances.
Hubbs and I have different doctor appts. today. When we're done, I comment on this particular issue.

Starlette