No Answers Yet For Problems With ASV

[Paper_Nanny]

How much do you think anxiety is intruding into your xpap activities/experiments and sleep ? ( it can play a significant spoiler role)
Are you aware of higher than normal levels of anxiety at the moment ?

Another good question from DSM. Yes, definitely more anxiety than usual. Anxiety and feeling a bit less hopeful than usual. I think I usually approach life's troubles with an attitude of "How am I going to do this? What do I need to do to make this work?" Which, of course, implies, at some level, a belief that it will work and that I can do this. I think with my xpap activities, I right now have many more thoughts of "This isn't going to work" and "I can't do this."

Yesterday afternoon, I took a nap and ended up turning the machine off after about 20 minutes. I kept feeling a bump in my breathing. Inhale- bump- exhale. And I felt like the machine was forcing itself on me, like my airway was being raped by the pressure. I turned it off, cussed at it for awhile, rolled over, and rested for awhile. When I went to bed, I didn't have Happy Joyful thoughts about the machine. Again, that bump when I was breathing. So, I reset everything back to the original ASV settings and fell asleep with no troubles. I will post the graph later.

I have never felt hatred toward my machine before. Never felt resentful towards it. I have, up until now, viewed my machine as a New Friend. Something interesting, novel, something that would help me. I liked my machine. The first night I used it, I could only keep the mask on for twenty minutes and then took it off and shut it all down. But as I did, I was thinking, "Okay, what is the problem? What do I need to do tomorrow to change the circumstances here so I can use this thing, all night, every night?" And then next day, I made those changes and pretty have used it all night, every night, since then.

But now, there is much more sense of "Why bother? It's not going to work anyway." Maybe at this point, I am seeing the source of the problem as ME and not the machine? It's not me adjusting to the machine or me and the machine learning to live Happily Ever After. It is ME-- my damaged, malfunctioning brain causing yet another problem. And then I think of all the things that could be going wrong with my breathing and I think of all the Worst Case Scenarios I can imagine and think about how this might be when my life comes crashing down, all because of my * brain stem. (*is where i would string out as many vile cuss words as i could.)

I was going to get a tattoo for my brain stem. I have been talking about it for a long time and finally got the rough plans for it worked out. And then we had to pay taxes and there was no money for that tattoo. Is this my brain stem's way of expressing its aggravation to me? If only I had gotten the tattoo sooner, I wouldn't be having these problems!

So, yeah, I am feeling more anxious. Frustrated. Betrayed. Scared. Lost. Less intrigued. Less interested. More tired of it all. And rather a bit surprised with myself. I had thought I was going to answer your question with a simple yes.

And in reply to NotMuffy:

Note to self:content of other people's notes to self is NOT sufficient reason for freaking out

What, we need the PFT results for the next discussion point.

One adaptive strategy I have developed is to do all my freaking out about the possibilities before I know what is going on. That way, if I am required to deal with a difficult situation once I get the answers, I am calm, in control, thinking clearly, and not freaking out. That strategy is adaptive only in certain situations. As I reminded myself in my note to self, this is not one of them.

See how easy this is?

Uh, yeah... I am trying to figure out the most entertaining voice, accent, and inflection for reading that sentence.

I am thinking I will read that entire post many more times, and then I may have a faint glimmer of understanding.

Deborah

[avi123]

[quote="Paper_Nanny]

See how easy this is?

Uh, yeah... I am trying to figure out the most entertaining voice, accent, and inflection for reading that sentence.

I am thinking I will read that entire post many more times, and then I may have a faint glimmer of understanding. :shock:

Deborah[/quote]


Uh, yeah...No Answers Yet For Problems With ASV seems to be the correct answer, and NotMuffy seems to be more polite than, Ted the clinician was, when he posted this:



Note, ASV machines were available long before 2006.

[rested gal]

I am thinking I will read that entire post many more times, and then I may have a faint glimmer of understanding.

Deborah

Deborah, I don't understand all that either. What I do know is that NotMuffy is offering advice I'd follow (which I think you are) if I were in your situation.

Looking back...

Is your MS status re: pulmonary involvement presently being monitored with, for instance, Arterial Blood Gas, Pulmonary Function Testing and/or Pulmonary Mechanics?

viewtopic.php?p=611530#p611530

No, that has not been monitored, but according to some of the reading I have done, it should be. Ideally, I would have had pulmonary function testing done at the time I was diagnosed to establish a baseline to which later testing could be compared.

I have an appointment this afternoon with Mister Sleep Doctor. I will bring up the need to have my pulmonary functioning tested. I read several articles referring to specific tests that may not usually be done, but should be done in my case.

Thanks for your post. I feel more prepared with specific requests to make at today's appointment.

Deborah

I had an appointment with Mister Sleep Doctor (MSD) today.
-----
End results of the appointment: I will be having a full set of Pulmonary Function Tests done in a few weeks, if for no other reason than to establish a baseline against which future testing can be compared, if the ms starts having an effect on my ability to breathe.

You should also get a set of Maximum Inspiratory and Expiratory Pressures. Arrange this beforehand to insure they get the "thing".

Which "thing"?

The Negative Inspiratory Force Meter:

http://www.boehringerlabs.com/products/ ... l-4102.php

Ask what the range of their NIF Meter is. At this point you could be normal and knock out a 120 cmH2O. While Boehringer makes a good product, you need to use their "High Range" (Model 4103) if you're pretty healthy, and the 4102 if more sensitivity is needed in the face of disease progression.

Regardless, Respiratory Muscle Assessment is a key component of the workup, and this is the "thing" to do it with.

(replying to avi123)...I have no reason to think that In my case, using an ASV is contraindicated because of thoracic restriction.

Let's hold on that until the results of the PFT come back. "Restrictive Lung Disease" has specific objective criteria, namely, a reduction in Total Lung Capacity (TLC), Functional Residual Capacity (FRC), and Residual Volume (RV). "That said", at this point, the aforementioned Pulmonary Mechanics may be a more sensitive measurement of where you are right now.

we need the PFT results for the next discussion point

So if you also have a reduced FRC, you have the Perfect Storm, and {that's - word inserted by RG} why you can take a normal AHI and blow it up into the 30s once you try to "fix" it.

Again, "if I were in your shoes" .... waiting to have the Pulmonary Function Tests ... and waiting for results ... it would frustrate the heck out of me to have to wait ONE MOMENT longer.

However, if the tests are the same ones NotMuffy recommends, done with the proper equipment, and administered as competently as he would perform them (tall order, that!) the wait will pay off in giving you a solid start in finding out What Needs Fixing Before Trying To "Fix" It. That's something he is a strong believer in...under all his nicknames -- sleepydave, deltadave, NotMuffy, Muffy, and StillAnotherGuest.

Not the dial-winging name spoofer, "StillAnotherGuess" who's most likely the

regular at Cpaptalk was in contact with me this week and mentioned your case and how you needed help.

[Paper_Nanny]

NotMuffy seems to be more polite than, Ted the clinician was, when he posted this

I don't think Ted the Sleep Guy was being impolite.

The post to which Avi is referring can be found here-- http://www.binarysleep.com/phpbb2/viewt ... &&start=30. I copied into this message as text to make it easier to quote in future posts.

In all honesty, I have not seen any real success with ASV. I have not worked with anyone that has had any real success. It is easy enough to Tx the obstructive events, but the Complex Apnea/Cheyne Stokes aspect remains elusive. The situation is this, Complex Apnea was recognized and described. The Bipap companies are selling ASV as a definitive Tx. Truth be told the concept of Complex Apnea is too new for us to address effectively. We were never really able to effectively Tx CSA. Many pts did not benefit. In my opinion, the problem lies in the timing of the breathing cycle. In Complex Apnea, the problem is in the feedback mechanism. The whole timing of the cardiac output and the metabolic need does not work cohisively with the Medulla and the Cerbro Spinal Fluid. Complicate that with variations in cardiac output which can be particularly variable in REM and you have a mess. A very difficult mess which needs to straighten out before one can effectively Tx it. We don't like to admit this but we have a lot to learn. We are still on the low end of the learning curve. I remember when everyone thought a little oxygen would stop CSA. It was ineffective. So it is with ASV. I am sure many out there will swear they have had great results with ASV. My hat is off to you. I and friends of mine in the industry have not shared this experience. Let me close this post with this thought. There are many diseases in search of a theraputic modality. ASV is a theraputic modality in search of a disease. Its main benefit is the increased revenue for the sleep center.

Note, ASV machines were available long before 2006.

What is relevant about 2006?

[dsm]

<snip>

Yesterday afternoon, I took a nap and ended up turning the machine off after about 20 minutes. I kept feeling a bump in my breathing. Inhale- bump- exhale. And I felt like the machine was forcing itself on me, like my airway was being raped by the pressure. I turned it off, cussed at it for awhile, rolled over, and rested for awhile. When I went to bed, I didn't have Happy Joyful thoughts about the machine. Again, that bump when I was breathing. So, I reset everything back to the original ASV settings and fell asleep with no troubles. I will post the graph later.

<snip>

Deborah,

I am pretty sure that 'bump' can be tuned by adjusting the BiFlex setting. BiFlex is a comfort adjustment intended to soften the transition from one flow direction to the other (inhale-exhale). BiFlex is available in BiPap mode.

It is not unusual to go through the frustrations you are feeling. You want so much for it all to work & you have some of the most advanced gear on the market & are talking to people with a wide variety of experience even if the reality is our shoes may all be of very different sizes - meaning, our SDB is not all due to the same causes & triggers. The really positive side of your involvement is that you are working things through. That is the only way I know of making progress (pain-gain loop).

The following comments are in sympathy with your situation & not intended as any claim that ASV in particular will solve your challenges. But, I recall nights where I was intensely frustrated with the Vpap Adapt because of both leaks and its insistence on controlling my breathing such that it kept waking me, but I was very lucky because I knew I could fall back on the Bipap AutoSV which was so much less demanding. There were at least 3 times over a 6 month period where I vowed not to use the Vpap Adapt machine again, but there remained a persistent belief that working through with it would be beneficial. That belief included the notion that my breathing needed a tough task master due to years of conditioning & it seems to me now that the persistence has paid off handsomely. No other machine I have tried has delivered such a long period of consistently good results. To me the proof was remarkably simple, being, was I going through bouts of feeling excessively drowsy at work again. Since going full time to this particular machine (roughly 18 months ago) that hasn't happened.

The great thing about cpaptalk is what you learn here. There is so much expertise and usually a lot of patience on the part of those who can and do help. SDB is not a simple topic by any means because there are so many factors. There are the physical issues of using this new medical equipment (flow generators, & settings, hoses & masks, leaks, nightly data etc: etc: ), getting to appreciate the relevance and importance of good SpO2 levels, then there is a wealth of information on the relevance of PaCO2 levels which feature prominently in the charts NotMuffy posted for you. That aspect leads into the complexities & interactions of hyper & hypo ventilation. It is particularly difficult trying to tie all the factors together holistically, thats where NotMuffy's expertise is important. There is also another reality and that is that these machines are not at all perfect and have their quirks. But the manufacturers and the researchers/designers have done quite an outstanding job in improving them. The period from around 2006 to 2010 saw some extraordinary changes in the offerings and costs available to us home users. This will continue as there are still many many improvements to be made. So, this reality is that we users have to make the best of what is available today. You are facing just such a challenge. And, you have cpaptalk to help you.

Cheers

DSM

[avi123]

avi123 wrote:

Note, ASV machines were available long before 2006.

What is relevant about 2006?


Reply:

The relevancy is that some posters (RG included) Pooh pooh Ted's post as being old from 2009 and as such is not up to date. IMO, wishful thinking.

[dsm]

<snip>

Not the dial-winging name spoofer, "StillAnotherGuess" who's most likely the

regular at Cpaptalk was in contact with me this week and mentioned your case and how you needed help.

RG

Where did that come from ???
You could have asked. Fact it it was Outasync (Bev) who contacted me !!!

Cheers

DSM

[Paper_Nanny]

The whole timing of the cardiac output and the metabolic need does not work cohisively with the Medulla and the Cerbro Spinal Fluid.

I am Deborah's medulla oblongata without me Deborah could not regulate her heart rate, blood pressure or breathing. (Fight Club is one of my favourite movies. )

How is my CSF involved in breathing?

I have a medication pump which pumps baclofen into my intrathecal space on a regular basis. Maybe that's my problem. I guess it's time to do some research on whether or not baclofen effects breathing. I am on a straight dose of 11.2 micrograms per hour all day, with a 50 microgram bolus dose from 19:00 to 19:20.

I thought I had another bolus dose programmed for the morning, a few hours before my usual waking time. I cannot find my most recent telemetry sheet. I have the one from March, which does not show the morning bolus. I saw Mister Pump Doctor in May and the morning dose may have been programmed during that visit. I'll have to check on that tomorrow.

What I really have to do now is stay away from my computer until after I finish the quilt blocks I need to have done by Wednesday!

Deborah

edit to change "his" to "her" in second paragraph

[Paper_Nanny]

So if you also have a reduced FRC, you have the Perfect Storm, and {that's - word inserted by RG} why you can take a normal AHI and blow it up into the 30s once you try to "fix" it.

Again, "if I were in your shoes" .... waiting to have the Pulmonary Function Tests ... and waiting for results ... it would frustrate the heck out of me to have to wait ONE MOMENT longer.

However, if the tests are the same ones NotMuffy recommends, done with the proper equipment, and administered as competently as he would perform them (tall order, that!) the wait will pay off in giving you a solid start in finding out What Needs Fixing Before Trying To "Fix" It. That's something he is a strong believer in...under all his nicknames -- sleepydave, deltadave, NotMuffy, Muffy, and StillAnotherGuest.

Yes, finding out what needs to be fixed before attempting to fix it does make sense. Unless it is me and I have to wait to find out and I am feeling impatient and want to do something NOW. Then I'm not so sure.

Thank you and DSM for the reality checks.

Deborah

[Paper_Nanny]

From last night, with the machine running in ASV mode. Does anyone think I would be better off not using the machine until after I get my PFT done?

[dsm]

Deborah - chart is too small to see

But as one answer. You are the one to make the call on if persistence at this time is the best option.

Cheers

DSM

[StillAnotherGuess]

What, we need the PFT results for the next discussion point.

You may want to remind Deborah that she will need to specify an ABG with her PFT. An ABG may, or may not, be part of her standard PFT work-up

"Arterial Blood Gases (ABG) - This is a blood test that may be ordered with your PFTs to give your doctor even more information about your lung health. ABGs can show how well your lungs are getting oxygen into your blood and carbon dioxide out of your blood. For this test, a sample of blood is drawn from your artery, from your wrist or elbow area."

[Paper_Nanny]

Deborah - chart is too small to see

I made it bigger and it should be see-able now.

[BrianinTN]

Edited - decided my 2 cents wasn't actually worth 2 cents after all

[Paper_Nanny]

I am pretty sure that 'bump' can be tuned by adjusting the BiFlex setting. BiFlex is a comfort adjustment intended to soften the transition from one flow direction to the other (inhale-exhale). BiFlex is available in BiPap mode.

I spent the hot part of the afternoon lying in front of the fan with Dogs, tuning that 'bump'. I was looking for something linear, like when I set the flex in ASV. Zero= very uncomfortable; two= very comfortable. But no, it wasn't like that. It was much more interesting than that.

Thank you, Mr. Bill, for your earlier existential post. It helped me focus on the experiential side of the flex. Most of the 'bumping' was happening when I was done inhaling, but the machine didn't think I should be done. "Breathe more! Breathe more! Inhale!! Inhale!!" it puffed to me, as I tried to turn around to exhale.

You are facing just such a challenge. And, you have cpaptalk to help you.

Thanks for the sympathy filled pep talk, DSM. It was much appreciated. (And much needed!)

Deborah