Apnea cured by playing wind instruments?

[Wulfman...]

Oh, I LIKE those two answers!

~~~ on my autoset
~~~ xpap

I will be sounding 'apnea educated' in NO TIME
Thank you. I need all the help I can get~~~


Also, thanks Den for the history lesson. That is really interesting.

Since I never had a titration study I wonder how much of it is an 'arte form' and how much is 'scientific' in finding that correct constant pressure?

Would folks going to multiple different studies in different states (or countries) be likely to have very different results? Could one study say they needed 4 and another 15? And did this happen a lot? Or were they usually pretty close?


It is optimum to always try and use the lowest possible pressure that will attain the desired results, right?
What are the dangers of overdoing pressure?

Will it make you weaker in any way?

I'm not sure if I can answer all your questions, but I'll try.

I'm sure it would depend on the "sleep doctor" reading the data and how they went about it, but it COULD vary somewhat in the pressure they derived at.
Ideally, if the person directing the pressure search uses a method which increases the minimum pressure and reduces the maximum pressure, over a reasonably short period of time, they should be able to narrow it down to an optimum single pressure. The most important thing is the minimum pressure. As in straight pressure mode, it needs to be high enough to prevent most of the events.
The "wrong" way (in my opinion) would be to start with wide-open settings and use the 90% or 95% pressure without a fair amount of scrutiny as to why the pressures went there. The primary things that cause pressures to increase are Flow Limitations, Snores and in some circumstances apneas (depending on the algorithms of the various machines).

Yes, the general consensus (from a straight-pressure user's standpoint) is to achieve the "best" (or close to it) results using the lowest pressure. No sense in torturing one's self with too much pressure if it's not necessary for therapy.
From my personal experience, my sleep doctor prescribed a pressure of 18 cm. (the sleep study stopped at 16 cm.) but after deciding that I couldn't handle that much pressure, I reset my machine (almost immediately) to 10 cm. and was pleased that it was "just about right". In fact, I used that pressure for the first year and finally started increasing it a couple of centimeters. I had roughly 1.0 (or less) average AHI numbers to start with and watched things like snores drop on their own over a period of time.

I really don't think that it will make you "weaker".
As far as I know, the only "downside" of pressures "too high" is that for a very small percentage of the population, "pressure-induced Central Apneas" may occur. Somewhere I read that possibly 15% of the users MAY be susceptible to that condition. But, if the person monitors their therapy and is aware of it, it can be avoided. It was often thought that the pressure of 10 cm. was the dividing point for such things to occur. ResMed designed their "A10" algorithm around that number (hence the name). It kept the (S7 and S8 Series) ResMed APAPs from trying to treat apneas over that pressure unless certain other characteristics were present in the user's breathing. In reality, some people can have Centrals at lower pressures. So, it can be a challenge to treat some people......and that's why some very sophisticated machines have been developed for those who do have Centrals.


Den

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[Julie]

It is a good idea to use the lowest pressure necessary, but within reason, e.g. if you have to struggle at a bare min. pressure, you're obviously not getting full therapy and comfort is a factor when it comes to breathing. And it's not fishing in the dark to titrate yourself with an autoset IF you use software (Sleepyhead) to track what happens overnight. You then can see exactly where your pressure likes to sit most of the time, and whether or not you have mask leaks, flow rate problems, etc. etc, leaving the pressure settings for a couple of nights at the same place to get a valid result. Obviously a default low of 4, unless you feel no problem inhaling whatsoever (almost no one is comfortable there) would not be a good idea, though software results could surprise you. However arbitrarily jumping it to 10 (rather than e.g. 6) all at once will not allow you to find the sweet spot if it were to be somewhere in between... you may end up needing 10 as the low setting but until you get scientific about testing by incremental increases rather than jumps, you'll never be sure what to do. Leave the high setting at 15 or even 20 for now - it's not an issue and can be dealt with later on - it would only matter much (yet) if Sleepyhead made it clear that it does - unlikely in the circumstances... just leave it for now.

When you get SH running and have tested low setting pressures for at least 2-3 nights at a time, moving up 1-2 cms after each 'experiment' depending on SH results - not just for the heck of it - you'll know what pressure is best. It's one thing to just set things at a higher level (e.g. 12) for no good reason and not necessarily need it, but another to set things too low for therapy on some principle that 'low' is best... if you need a higher pressure, then you need it.

What, if anything, are you doing with the ramp feature - do you use it? At what settings?

And no, Cpap does not make you weak!

You know, I think more people would be inclined to help you if we believed you were serious about this.

[ChicagoGranny]

Ideally, if the person directing the pressure search uses a method which increases the minimum pressure and reduces the maximum pressure, over a reasonably short period of time, they should be able to narrow it down to an optimum single pressure.

... completely oblivious to the fact that humans' pressure needs will vary as they change body positions, as they cycle through different stages of sleep and as their pressure needs even vary from night to night.

The big advantage of APAP is that it allows the patient to use a lower pressure when a lower pressure is sufficient for good therapy. Many will be able to sleep much of the night at lower pressures. Yet, the APAP will provide a higher pressure when needed.

Why do you think Pugsy is always telling people that the 95% pressure statistics doesn't mean much? Because people sleep comfortably at lower pressures much of the night and the higher pressures only come when needed.

There is nothing "ideal" or "optimum" about selecting a single pressure.

[chunkyfrog]

. . . Presumably they would adjust to the user's needs during the night.

Mine does EXACTLY that.
I only get the pressure I NEED, eliminating excess pressure,
AND PAINFUL AEROPHAGIA.
Luckily for me, my Autoset does this.
In the past, heated humidifiers were considered an "extra", not the essential feature they are today.
Autotitrating machines are, for some of us--ABSOLUTELY NECESSARY!

[BlackSpinner]

I am definitely getting a didgeridoo. I am just pondering designs details myself, ChicagoGranny. I have bamboo in the yard too, so I may try to make one? I think it will look great next to my kendo stick (bo?). I haven't thought of that stick in a while. I flew back to the east coast with a gorgeous boy from San Jose who was on an Olympic Kendo Team or something. (Inspired me) I need to find some other old ladies who want to stick fight me. Then we can blow the didgeridoo to cool down and ride the vibe. Hot Yoga is so 2012, right?

You can make a didgeridoo out of a PVC pipe with a little bees wax at the mouth piece.

[Grace~~~]

What, if anything, are you doing with the ramp feature - do you use it? At what settings?

And no, Cpap does not make you weak!

You know, I think more people would be inclined to help you if we believed you were serious about this.

I'm so sorry it appears to you that I am not serious, Julie. I am VERY serious. I feel like cpaptalk is helping me tremendously and that I've gotten incredible information and feedback personally. I am so grateful.

I apologize if I am not absorbing this info at an acceptable rate. Each time I post I do feel awkward and realize that I am having difficulty even understanding your answers. However, I then think about and dwell on those answers for days.

I have made many changes. I shut off the ramp. I chose not to use humidity. I changed my lower setting from 4 to 8. I turned on my EPR and played with that finally deciding on 3. I changed masks to my current dreamwear. I devised a MacGyver style hose support. ... and I am currently working on my leak issue and obtaining good data that I can then learn how to upload 'IN A CORRECT FORMAT' to Pugsy for her invaluable assistance.

It's funny how differently one can sound on these boards than what is happening in real life.

We buried a friend yesterday. A 33 year old mother with three elementary school children. She was so strong. I thought she would win the battle. I have been deep in reality which is not synced up with the world at large. I have been fighting hopelessness and futility in a VERY real way. It's interesting to me that 'anonymously and in writing' I sound 'not serious'. I really appreciate the feedback. It may be the MOST valuable thing to ponder? Thank you. I wish calibrating my emotions and mind were as easy as pushing a button on my XPAP.

I will update my signature line on my avatar to show what I am doing. That makes good sense, right?

[BlackSpinner]

Don't worry about how you sound. Many people use humour to deal with devastation. It is your life. Other people need to handle their own reactions, you are not responsible for their their hysterics. Julie is a cranky old lady, I am a sarcastic one.

[Grace~~~]

You can make a didgeridoo out of a PVC pipe with a little bees wax at the mouth piece.

You are so BRILLIANTLY creative, BlackSpinner. I saw your dolls on another thread. WOW!

I will definitely be blowing on some pipe soon! Just, why not?
The PVC pipe will definitely be in the mix.

I do love the look of those beautiful didgeridoos I was researching yesterday ...

For decor reasons too. It is funny to think of someone seeing it and thinking it looked great and saying "Did you redo?" "Your didgeridoo is beautiful".


...and THANK YOU for your kind words. For a couple of years now I feel like I am speaking in to a void where you can't hear the sound of your own voice and I am not even sure if I spoke or just thought it. It's so surreal that my only reaction IS to find it humorous.

[Julie]

Grace... I'm really sorry you're having a bad time, and about your friend. I tend to get impatient though with some things and when you asked if Cpap made you weak, I just reacted quickly because it seemed so silly. However I also spent some time trying to explain self titration to you and it might have been nice if you'd responded to that as well.

Everyone here has baggage and it doesn't always suit everyone else... I've found many of your posts to be frustrating, full of drama (and I don't mean the last) and quite scattered, all over the place about Cpap and hard to tell just what you need vs just that starting Cpap is confusing... we've all been there, but managed to curtail some of our expression of confusion to requests for clarification of individual features, which we then follow up on and talk about rather than continuing to be all over the place. I won't bother again but hope you feel better.

[Grace~~~]

Grace... I'm really sorry you're having a bad time, and about your friend. I tend to get impatient though with some things and when you asked if Cpap made you weak, I just reacted quickly because it seemed so silly. However I also spent some time trying to explain self titration to you and it might have been nice if you'd responded to that as well.

No problem, Julie. Thank you again for adding your wisdom to the self titration subject.

I certainly didn't mean that XPAP would make one weak. I am sorry that my post sounded that way. I wondered only if OVER PRESSURE could weaken one in any way. I have vague ideas about balloons being over blown. However, on the other hand it makes me wonder if XPAP at a high pressure would be more like lifting a weight and would actually make one stronger? The first week or so I actually had chest pain and now that has disappeared completely. I can only imagine that it was an unused muscle that it now stronger and / or more pliable. (However, it concerned me while it was happening since my brain wanted to think *chest pain = bad*.)

It seems reasonable to me that XPAP must be having some impact on our physiology?
Even while it is having such a positive impact on keeping the airways open so that our brains and blood do not become oxygen starved.

As the blanks fill in for me I will surely be able to have more specific questions. I am working on those questions right now. The idea of digeridoo and another subject "power bobbing in a pool" are just easier to think about as I've never been good with technology and the sleepyhead data is difficult for me at this beginners point.

I probably belong on the other site I've heard y'all reference. (The one for eight year olds ) lol
...but I don't want to "fit in" ... I want to LEARN.

I'm definitely not giving up.

[BlackSpinner]

I attempted to learn to play a didgeridoo back in the nineties. I couldn't do it.


I "learned it" sitting on a large boulder in a clothing optional commune in California north of the Nappa Valley- there were several of them to try - some original and others were PVC pipe ones.

[Julie]

I get it, I really do - so non tech here, and I think I was just lucky when starting out that I knew nothing, had no forum yet and got a terrific DME + tech. The machines weren't quite so fancy then plus I'm lucky to have ever only needed the same old mod. settings and mask, etc... I should remember that others panic and sometimes with good reason!

Just try to focus a bit , forget didgeridoos, etc, and work on C/Apap one step at a time (settings, sleep hours, diet, etc) and you'll be farther ahead and not feel so overwhelmed, more in control. You'll get there, somehow most of us managed to (tho' sometimes I really wonder ).

[Grace~~~]

you cpaptalkers are the best!

I'll try to focus Julie.
It's hard to imagine you're not a PRO with tech.
You seem SO knowledgeable at everything XPAP.
I know you'll see improvement in my posting style.
I will move from shotgun mode to riffle as it all sinks in ...

BlackSpinner ~~~ that digeridoo story is awesome!
AWES ME~~~

I am going to leave this computer now and go do some naked power bobbing in my pool.
...and then look for a piece of PVC!

I don't know if it will help with my breathing muscles but it can't hurt.

... is the name BlackSpinner have anything to do with whirling dervishes?



powerbobbing is done at the deepend of the pool going down in to full crouch and pushing hard off the bottom with the attempt to get as much of the body above the water's surface and then immediately sinking back down to the bottom to do it again. It definitely takes some breathing control.

[palerider]

There is nothing "ideal" or "optimum" about selecting a single pressure.

shhh, you're blaspheming his god!

[Wulfman...]

Ideally, if the person directing the pressure search uses a method which increases the minimum pressure and reduces the maximum pressure, over a reasonably short period of time, they should be able to narrow it down to an optimum single pressure.

... completely oblivious to the fact that humans' pressure needs will vary as they change body positions, as they cycle through different stages of sleep and as their pressure needs even vary from night to night.

The big advantage of APAP is that it allows the patient to use a lower pressure when a lower pressure is sufficient for good therapy. Many will be able to sleep much of the night at lower pressures. Yet, the APAP will provide a higher pressure when needed.

Why do you think Pugsy is always telling people that the 95% pressure statistics doesn't mean much? Because people sleep comfortably at lower pressures much of the night and the higher pressures only come when needed.

There is nothing "ideal" or "optimum" about selecting a single pressure.

If you'll reread my post, I was referring to how someone from the sleep-medical community MAY try to find a single, therapeutic pressure for a person for whom they would be prescribing a straight-pressure CPAP. Or, more specifically, how they probably did it in the past......and how Kaiser, more recently probably did/does it, as a general rule. They didn't always give out APAPs and many still don't prescribe them at will. All you have to do is see how many "bricks" have been and still are being dispensed.


Den

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