No Answers Yet For Problems With ASV

[dsm]

Deborah

Here are my impressions (qualified by a lack of familiarity with this form of chart & that I am no respiratory expert of any kind).

The period you 1st mention around 1:20 & 1:21 appears to show the machine inserting timed breaths because your breathing
is pausing too long & it needs to trigger a breath.

But, the thing that really catches my eye is how you breathe. Again, I have not really seen these types of chart before
but I would expect to see each breath more like the breaths shown by this poster in another thread ...
viewtopic/t66194/Central-Apnea-Question ... ml#p617255

See how that posters breathing cycle is continuous whereas all I see in all your charts (perhaps my inexperience) is a short
'pant' in-out and then briefly a flat line with no real effort (almost a gasp & pause). The flat lines between each breath just look
quite odd to me. I am thinking "what kind of volume is really being breathed & is it properly entering this person's lungs ?".

Compare the 1:20 section of breathing with the breaths (for example) at 5:59-6:00 & there you see what looks like a bit more
normal 'shape' pattern (to me) but with slightly reduced amplitude & at a slightly faster rate. Then look at 3:43 to 3:49 & there
is that odd very flat period between quick breaths. Because I am no expert I have no idea if these patterns are good bad or
indifferent but the impression I have is that most of this is not 'good' respiration.

Again I will say that I am merely presenting my layman's impressions.

DSM

[NotMuffy]

Using BiPAP set at 8/12, I am still having a high AHI and do not feel as well rested as I did immediately after starting therapy. What do we do next to fix that?

"We" need to clarify if it is due to "sleepiness" or "fatigue"; define the underlying contributions of SDB, pharmacological intervention and other underlying medical conditions; consider if the improvement was physiologic (there is a small SDB component, sleep quality improved briefly, perhaps due to paying off a sleep debt, now sleep is fragmented again) or psychologic (Placebo or Hawthorne Effect). Then...

I will... per MSD's order.

Figure out how to use your physician resources. You need a "Team Leader" to make decisions when treatment choices cross over disciplines. For instance, let's say your sleep physician (MSD)(not for nothin', but did you know a lot of sleep physicians read this forum?) (And Sleep Architecture is almost like a fingerprint?)(And I don't imagine he'd take too kindly to being called "MSD"?)(Which also relates to my points about dial wingin', questioning his authority by asking for raw data, and needing to win the war and not just a battle?)(Did you know I like parentheses?)(Did you know I digress a lot?)(Did you know that when I say that I hope for an ELE I really mean it?) says "OK let's get rid of the methylphenidate-modafinil-duloxetine combo 'cause Muffy, a baked-goods on the Internet said to". SB'sC! He would never ever ever ever ever ever ever do that because then HE'D have to handle the ensuing chain-reaction (and an ASV won't fix that chain).

How often should I repeat PFT to monitor my status?.

Let's see what the pressure measurements bring. Recall that

...some level of respiratory insufficiency (although MS is not particularly known to generate that, at least not to the extent of some of the other NMDs)

With the super-normal results presented thus far, you could deteriorate by 33% and not even feel a twinge, so I'm thinking routine spirometry with pressures at the annual physical would be good enough to watch for trends. Report acute changes immediately.

I almost always go into my medical appointments with my questions already thought out and prioritized, with a rough plan, and prepared to think on the fly..

What do you have so far?

"IYHO", how do I think the conversation will go?

Yesterday you thought it would go great. Today you're not so sure.

I will work on writing more concisly when posting here.

It is not important to be "concise". It's more important to be "focused".

[Paper_Nanny]

"We" need to clarify if it is due to "sleepiness" or "fatigue";

The only way to define that is based on my subjective interpretation of how I am feeling, and my assessment as to why I am feeling that way. My judgement is informed by my experiences over the past 13 years. I have clarified that there is a significant portion of my not feeling well rested that is the result of sleepiness.

your sleep physician (MSD)(not for nothin', but did you know a lot of sleep physicians read this forum?) (And Sleep Architecture is almost like a fingerprint?)(And I don't imagine he'd take too kindly to being called "MSD"?)

I did not know a lot of sleep physicians read this forum. I did not know Sleep Architecture is almost like a fingerprint. I do not have reason to believe that he would not take too kindly to being called MSD. There is no disrespect implied or intended in that abbreviation.

(Which also relates to my points about dial wingin', questioning his authority by asking for raw data, and needing to win the war and not just a battle?)

Your point about "dial wingin'" was taken seriously and I am no longer altering my settings. I do not think requesting raw data implies a questioning of his authority. If he thinks it does, I can only hope he brings that up at my appointment so I can clarify my position on that.

(Did you know I like parentheses?)

I did not know you like parentheses. I did know you like tildes.

(Did you know that when I say that I hope for an ELE I really mean it?) <snip> SB'sC!

I did not know that you say you hope for an ELE you mean it. Nor do I know ELE stands for. I also do not know what SB'sC means.

How often should I repeat PFT to monitor my status?.

Let's see what the pressure measurements bring.

According to the nurse and MSD's office, the results were "normal" and I am breathing fine. I will still ask for his recommendation on how often I should have the tests repeated. Being asked questions like that will give him a feeling of authority.

"IYHO", how do I think the conversation will go?

Yesterday you thought it would go great. Today you're not so sure.

"IYHO", why did that shift in my thinking occur?

I will work on writing more concisly when posting here.

It is not important to be "concise". It's more important to be "focused".

I will work on staying focused when I post.

Deborah

[rested gal]

(Did you know that when I say that I hope for an ELE I really mean it?) <snip> SB'sC!

I did not know that you say you hope for an ELE you mean it. Nor do I know ELE stands for. I also do not know what SB'sC means.

ELE - Extinction Level Event
http://en.wikipedia.org/wiki/Extinction_event

The comet "Elenin"
http://news.discovery.com/space/will-ea ... phecy.html

My note: The "asteroid post(s)" was(were)...lemme see...yeah...find 'em by typin' into a Google search this-a-way:
muffy asteroid site:cpaptalk.com

or by cpaptalk searchin' 'nother-way:
search.php?keywords=asteroid&terms=all&author=muffy&fid%5B%5D=1&sc=1&sf=all&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

Also try those things in your idle time (like in a doctor's waiting room) putting in the names:

NotMuffy
StillAnotherGuest

"SB'sC" -- dunno. Still pondering that one. Or "those."

[JohnBFisher]

... (Did you know that when I say that I hope for an ELE I really mean it?) ...

Hmmmm... As a Baked Good, NotMuffy must be feeling half-baked. Obviously, NotMuffy hopes an ELE will leave him well done, if not toast!

[rested gal]

... (Did you know that when I say that I hope for an ELE I really mean it?) ...

Hmmmm... As a Baked Good, NotMuffy must be feeling half-baked. Obviously, NotMuffy hopes an ELE will leave him well done, if not toast!

[NotMuffy]

...NotMuffy hopes an ELE will leave him well done, if not toast!...

A "toasted muffin", eh?

Interesting concept, but I don't think it'll ever catch on.

Just the same, I pass it along to my cousin Tom in London. He's looking for some new ideas.

[NotMuffy]

"SB'sC" -- dunno. Still pondering that one.

Snow Ball's Chance!!

[Paper_Nanny]

"SB'sC" -- dunno.

Airport in Brazil. I don't know why the apostrophe. Possibly a preferred punctuation in addition to ~?

{oh, but now as i go to post this, i see notmuffy has explained it. and i was wrong.}

I do not have reason to believe that he would not take too kindly to being called MSD. There is no disrespect implied or intended in that abbreviation.

I almost asked him when he called today, but in my attempt to STAY FOCUSED on what is IMPORTANT, I did not.

I told him I didn't think things looked all so good on the BiPAP. He said he would like to see the data before my next appointment. I will be dropping off my cards in the near future for him to download.

I will not be having a MIF or MEF. With PFT scores between 100% to 130% of expected and especially with a vital capacity as high as mine, there is no indication for those tests, to paraphrase what my sleep doctor said.

Heading back to the corner to further repent,
Deborah

edit to fix formatting on quote. blah. it is a recurring problem.

[NotMuffy]

Heading back to the corner to further repent,

Why?

Because of the ELE?

I think we have a couple of days yet.

Besides, as noted, it's not like EVERYTHING gets extinked.

Just most of it.

[SleepingUgly]

I haven't followed this thread closely but I noted the thing about asking for the raw data. I will be asking, and getting, a CD of my raw data at my upcoming sleep study and titration. I did this last time too. In the past when I didn't do it, they converted their system to something else, and then couldn't get me a copy of my raw data because they couldn't even access it (or so they said). So now I leave with my data. I don't see getting a copy of my own records as questioning authority, but if it is, so it is.

[Mr Bill]

"SB'sC" -- dunno. Still pondering that one.

Snow Ball's Chance!!

That would be an ELE comet.

[Paper_Nanny]

Also try those things in your idle time (like in a doctor's waiting room) putting in the names:

NotMuffy
StillAnotherGuest

I am nowhere near that portable with my searching! And now, I find I made much of this evening "idle time" by searching for posts by or about NotMuffy/ StillAnotherGuest.

I usually sew pieces of my "Apology Quilt" while waiting. When finished, it will have three thousand 2" squares. Each square represents an apology.

Deborah

[NotMuffy]

Boy, I tell ya, one good swing with that thing:



and I could "Rapture" somebody.

NotMuffy's good, but a death worshipper...

What, "death worshipper".

I be "realistic".

I figure:

• If time is infinite before us, and time is infinite after us, the liklihood of being alive at a point along the continuum such that you would be aware of your existence is absolutely impossible.
• Most people can't grasp that concept.
• Consequently, I figure an event that would realign everyone's thinking might be helpful. Kinda like defragging your computer:

[/quote]

OK, maybe I need a different metaphor.

[BrianinTN]

Muffy: I'm going to ask a probably-stupid question because even after reading everything written here, I'm still pretty confused on one point. What is it that you would advise Paper_Nanny to be doing with her pressure and backup rate settings, both "now" to provide a consistent and not-dial-winged data set for her doctor, and after her appointment, should she leave that appointment with no answers? Aside from preparing for the ELE, of course.

I realize that the answers to those depend heavily on the various questions still in the works (e.g., other underlying causes of her fragmentation). But for Paper_Nanny, she needs to have some "defaults" to fall back on. I know you've commented on the silliness of clubbing her few events to death with an ASV, but she seems to have had both qualitatively and quantitatively poor sleep (even relative to her diagnostic PSG) with the latest assortment of constant pressure and constant bilevel pressure winging. Putting myself in her shoes and looking at her data, I don't know what those defaults would or should be, and I'm intellectually and selfishly curious to hear your input.

I wrote a paragraph summarizing her data, with a little thesis too, but I'm axing that for now. I already know I'm not smarter than a 5th grader, never mind a trained professional.