CPAPtalk.com

Songbird wrote:In spite of all of this, aren't you at least getting better oxygenation?

The benefit of that alone is STAGGERING, Bev.

Can I show you how big the difference actually is?

SAG

Snoredog wrote:If SAG said he didn't see any microarousals possibly contributing to the daytime fatigue then the SV isn't going to help.

What's the status on that issue? I probably missed where SAG said he didn't see any microarousals.

Also wondering what the status is regarding Sandman's ability/inability to measure bistable sleep.

StillAnotherGuest wrote:

Songbird wrote:In spite of all of this, aren't you at least getting better oxygenation?

The benefit of that alone is STAGGERING, Bev.

Can I show you how big the difference actually is?

SAG

That's evidence enough, IMHO, to continue PAP therapy. When I was forced off PAP therapy because of trigeminal neuralgia, my hypertension gradually rose. Enough years of that and I'm gradually dead---or not-so-gradually.

-SWS wrote:What's the status on that issue? I probably missed where SAG said he didn't see any microarousals.

I haven't seen him mention it either, so it is more of what he didn't say than what he said. I took away from that response he thought AHI of 1.4 was good. I think that is good too and reason I said another machine would probably not be any better as stated in early replies in this thread. But that is water under the bridge now.

Like you, I think somehow her daytime fatigue said maybe there is something missing that we are not seeing here, like microarousals like spontaneous events from UARS? SAG would have access to that data if it was on the disc. Since he came back after reviewing said data and consulting his buddy at B & W and said AHI was 1.4? you can only conclude from that he didn't see microarousals as an issue. He has since updated his response to inconclusive based upon AHI data.

Since her 2 PSG's don't make any mention of microarousals even with abnormal RDI there is no RERA score either that I recall to indicate otherwise. So I have to assume the same, there wasn't any of any significance. Then a few baseline experiments on the SV attempting only 1 to 3 cm pressure support causes PB and Central dysregulation.

Next, She had ZERO centrals on her 8/31/07 CPAP titration even though sleep wasn't very good. Zero? Can that be? is it there are none
there or did they not see any? If so, it's time for a new lab, but I don't think that was the case. Jack her pressure up in the high teens with false information from the machine and guess what you will get centrals, PB, and everything else you can toss in. I also think that same inaccurate information from the machine also led her down a path thinking she needed more and more pressure. I don't fault anyone other than the machine being stupid.

-SWS wrote: Also wondering what the status is regarding Sandman's ability/inability to measure bistable sleep.

Yes it does, use cycle states to indicate resistive breathing. That won't help with centrals seen at least it CAN tell the difference between obstructive and central, or at least 6 out of 10 anyway, for the other 4 it won't respond unless delivery pressure is below the Command on Apnea setting. But the current machine is STUPID it will respond to those centrals before it finally says duh I shouldn't have responded to those.

Sandman reports will tell her how severe her CA's are, frigging SV doesn't do that. All she can tell with that machine is she is going into back up mode and everything is under "AP" for both obstructive and central. For a $5k machine, that thing is dumb as a door knob. Could be why there are so many showing up on the used market.

StillAnotherGuest wrote:

Songbird wrote:In spite of all of this, aren't you at least getting better oxygenation?

The benefit of that alone is STAGGERING, Bev.

Can I show you how big the difference actually is?

SAG

-SWS wrote: That's evidence enough, IMHO, to continue PAP therapy. When I was forced off PAP therapy because of trigeminal neuralgia, my hypertension gradually rose. Enough years of that and I'm gradually dead---or not-so-gradually.

I don't think anyone here is suggesting that she go completely off therapy. I suggested she go ahead with obtaining a Pulse Oximeter so she can monitor the situation over any machine she decides to use.

I also suggested she use a machine that does a better job at differentiating obstructive from central. I don't deny that CSDB exists, but I also think there are ways around it besides a $5k machine. People who have a tendency for CA need low pressure not high pressure. The Resmed machine I think limits out at 13 cm. Her "fixed" bilevel titration of 4 cm pressure support shows she doesn't do so well on bilevel either. So if CPAP shows the most promise, then why not use one that does a better job at treating frank apnea, does the best job at avoiding any response to centrals and gives better reports. With the Sandman she can have lower pressure which only increases comfort, it will avoid the centrals which only drive up the other machines response and make things. worse.

What if her centrals were only a result of transitioning from non-REM to REM or vice versa? A Remstar would respond with pressure first and ask questions later. Sandman would say lookie there a CA I better write that down.

IF she has resistance breathing even remotely close to being a Flow Limitation the Sandman will pick that up, how it responds is completely controllable by settings. Your ability to control how a Remstar responds to FL is very limited. Not so with the Sandman. We have seen many times where some with the IFL1 enabled their sleep turns into a train wreck. We also seen it settle down to a dining car ride disabling it. Besides, she can buy 3 or 4 of those for what the SV costs.

My suggestion to Bev:

1. Sandman Auto w/software, use at low pressure below 9 cm.
2. Sell the SV to pay for it.
3. Get a Pulse Oximeter with timeline logging reports so you can correlate to what Sandman reports say.
4. See her doctor about a trial Provigil script, you don't need a MLST to trial that, its for OSA too.
5. Consider any allergies.
6. Sell the Aflex if the Sandman works better and I think it will.

This is for the Big Four: What I'm about to say is NOT meant to be criticism of any sort or to any degree, and I'm sure that whatever amount of emotion comes through in this is miniscule when compared with the level of frustration each of you must have been enduring for the past month. That said, please allow me to offer a layperson's opinion:

Bev started this thread one month ago yesterday. She's fielded countless questions, tried countless settings and posted countless reports. The Big Four, all of whom have my deepest respect, have knocked around countless theories, and one or the other has requested all of the above from Bev. I realize this is a complex question (no pun intended), and one that's not easily solved. But if I were Bev, I would have run screaming from you guys long ago.

It may make all the sense in the world to you guys, and it might in fact be the best way to proceed, but to my untrained eye, it seems like one of you tells Bev to do one thing (calling it "my vote"), and in the next post another says to do something else. I know you all have her best interest at heart. I do. I also know that all of you enjoy discussing the theoretical and that a certain amount of it is necessary, but for how long, guys? Frankly, if I were Bev, who is a LOT nicer than I am so probably wouldn't do it, I'd be making sure you understood that I don't give a rat's ass WHAT you're going to discuss over the winter months, I need an ANSWER because I almost drove through a TRAFFIC LIGHT the other day.

Is it possible (and I'm being serious, not sarcastic) for you guys to focus on making a clearly stated consensus opinion? What Snoredog said in his last post on page 44 makes a lot of sense to me, but I am so clueless it isn't even funny. But it's in English, it's clearly stated, and it sounds like a plan. Before you guys move on to other theories, would it be possible for you to discuss that set of suggestions, develop a plan you all agree on, and let her try the plan and report back before you guys move on to the next suggestion? Agree on a plan, let Bev give it a try and report back, and only then come up with another plan if it's needed. Shooting a muzzleloader rather than a streetsweeper. One plan at a time.

If you all agree that a Sandman's what she needs, is there anybody in this forum who has one that he/she uses as a backup, as well as the software, who could loan it to Bev until she sold the SV and AFLEX?

Okay, that was probably more emotional than it needed to be, but I'm an emotional person, and I'm worried about Bev. Please don't take any of it as an attack. You four men are incredibly gifted, and the amount of time you've given to this is overwhelming. I am in awe of each of you. But if you could put any nonessential theorizing aside for now and agree to only suggest a consensus plan instead of throwing something different at Bev every time she turns around, perhaps it might lead to a solution. If Bev's willing, that is. Bev, I hope you are. You matter to so many of us.

Marsha

Marsha,

For me to be able to offer any more than I have, I'd want to be down the street from Bev & able to focus on the issues directly.
The committee approach is endemic to discussing problems like this in a public forum. One reason I backed out a bit. I have
no doubt that the multiplicity of opinion has not helped the person in most need.

I suspect the others probably think the same.

DSM

dsm wrote:For me to be able to offer any more than I have, I'd want to be down the street from Bev & able to focus on the issues directly.
The committee approach is endemic to discussing problems like this in a public forum. One reason I backed out a bit. I have
no doubt that the multiplicity of opinion has not helped the person in most need.

I suspect the others probably think the same.

Understood.

Is there anything about Snoredog's plan that you specifically disagree with? If so, what would you specifically suggest in its place?

Marsha

Songbird wrote:This is for the Big Four:

Marsha

Read what you said but this website is about therapy machines and helping people out. IF we all go to Personal Messaging (PM) then NO one learns anything from the discussion and this site would quickly become a bore like the others. You probably do more PM's in a day than I do all year.

Discussions like this help everyone better understand their disorder, their machine, what works an what doesn't. It helps them weigh the pros and the cons. DO everything in PM's and you end up with BAD advice.

In PM's there is NO one to scrutinize that bad advice to indicate otherwise. In public, if I suggest something that isn't quite kosher, you can be assured there will be someone else to come along like -SWS, dsm or SAG to let not only me but more importantly YOU know it isn't right. SO in a PM you lose that scrutiny and doing so can even be dangerous. It is why I generally make it policy NOT to discuss these items in private PM's, no one learns and you get better suggestions.

Sure it gets a little boring answering what mask one should get and even frustrating when a few come to this site where people already spend an enormous amount of their time helping others then see some clown throwing childish temper tantrums because you didn't respond fast enough. IF you want a faster response, then go pay for it but I seriously doubt you will get better suggestions than what this site has to offer.

This is a discussion board, we openly discuss issues to learn from each other. It is not a medical site, it is a learning site. Spend any amount of time here participating in the discussions and you will leave with more knowledge about your disorder, more knowledge about other disorders, more knowledge about therapy devices than you can expect to receive anywhere. We are not limited in our response to any professional ethical oath although my experience here is everyone tries to honor those ethics unless you come here and try to censor our voice, for that we will glady express that you to take a hike.

Discuss it in public, gather up everyone's suggestions and opinions THEN you decide, as it is NOT our job to advise you.

While I cannot speak for the others, that is the way I see it.

You have no idea how many PMs I do or don't do. Anyway, that's beside the point.

I didn't say anything about PMs. I didn't suggest that you guys have any of your discussions via PMs. In fact, I completely agree with you that it's best to conduct discussions publicly in the forum. Completely. Where did that come from?

Marsha

Songbird wrote:You have no idea how many PMs I do or don't do. Anyway, that's beside the point.

I didn't say anything about PMs. I didn't suggest that you guys have any of your discussions via PMs. In fact, I completely agree with you that it's best to conduct discussions publicly in the forum. Completely. Where did that come from?

Marsha

Sorry, maybe from PM's I've received in the past on he said/she said obviously to stir up the chili but I don't play those games either, some come to this site as a socializing place and others don't.

you don't think we are NOT concerned about Bev's welfare here??

if that is NOT it what is your point?

Marsha,

If I had my 'druthers' I'd rather see Bev being given prime attention by an RT who has a specialty in erratic respiration and its causes.

One of the reason people come to these forums is because they either don't have the $s or a trust in their RT or doctor. The advice
offered here is free but carries the risk it will lead nowhere or to incorrect assumptions. Snoredog has made a good point about how
we will step in and question each other if what is said doesn't make sense.

I believe a lot of people, perhaps even some professionals, who are able to see past the variance in our ideas, have learned a good deal
about the more complex side of this therapy and where complications can appear to be one thing but may be another.

I have learned a great deal - for me having seen my own SV data for quite a long while, it was most informative to see Bev react in
quite a different way than I would have expected and predicted. I imagine others have learned as well) that there can be aspects to
breathing that we may not have fully grasped before - for me this was the difference between Variable Breathing vs Periodic Breathing.
I believe Bev exhibits severe Variable Breathing ( = erratic rate & volume) & not Periodic Breathing ( = "periods of breathing" typically
cyclic in nature where volume rises and falls in a pattern). Most types of PB can be addressed by an SV machine but as we have seen
VB doesn't appear to respond well (in Bev's case - where the pressure support trying to correct her VB seems to trigger hypercapnia
(CO2 retention) and thus headaches).

I believe we here may have honed in on this every bit as effectively as a professional may have. Bev's case is not a simple one.

Bottom line is we all care & our common input has led us to some conclusions that are probably as good as can be got elsewhere.

I do wish we could go the extra yard & get to the source of the erratic respiration but that seems to be falling outside the realm of
CPAP therapy and into medicine & I am one who will steer clear of any suggestions as to medication.

DSM

Bev, I think you have shown admirable bravery, intelligence, patience, and emotional fortitude in this thread, even though it must have been a painful process, and it has led to some momentary disappointments. In my opinion, though, you are much further along in your search than you would have been without this thread. I would feel pretty fustrated, overwhelmed, and exhausted myself just trying to follow the thread, let alone follow through on ideas presented.

Many of us have multiple health issues that can interact with one another, and SAG's observation (if I may paraphrase his words) that there may be a need to look beyond the treatment of SDB for further resolution of daytime fatigue is pure gold. It may be disappointing to hear on one level. But on another level it gives hope--it doesn't take hope away. It may point you in a direction.

You have been through a lot in recent years, it sounds to me. Injury, surgery, etc. So I hope you didn't mean that in the larger picture how you are feeling now is as good as it gets. Your body is still looking for ways to do its thing, and you are doing what you can to cooperate with it, so there is every reason to think things can improve as you continue your fight.

Please don't give up on getting the PSG and MSLT when you can. And please keep working with your doctors as you try medicines and other approaches to deal with things. In the meantime, breathing when you are asleep is as important as breathing when you are awake. So trying a few tweaks to keep that effective and comfortable can't hurt. But you know that.

Please pardon me for stating the obvious. It's a bad habit I can't seem to shake.

Keep fighting!

jeff

OutaSync wrote:Since I got James Skinner's Analyser program now, I realize that even though I have my leaks under control and my apneas down, the ones that I have are long! I can't figure out why the APAP doesn't even try to increase pressure to eliminate them. I can see missing a few that are 12 seconds long, but how about an average of 36 seconds? Isn't this why we have these machines?

There is probably another reason.

About 40% of SA sufferer has expiratory apneas. Most of these is just in the end of an inspiratory apnea. But some also have stand alone expiratory apneas.

These stand alone expiratory apneas the APAP can't manage, because with this kind of apneas there is no snoring or changes in the airflow.

Then the APAP machine have to wait until the apnea release, and then it will set up the pressure. This increased pressure will last for 20 minutes, before the APAP set down the pressure again.

This opens up for up to 3 apneas per hour.

Unfortunately you can't know if you have expiratory apneas. The normal PSG sleep study don't meassure that. Then you need a PES meassurement.

You can try to slowly increase the minimum pressure, and see if your apneas dissappears.

Bev,

Just came across this easy to read doc & thought you might find it a very interesting read.

Doug

http://mindpub.com/PanicAttacksinCOPD_chapter4.htm

hmp wrote:
About 40% of SA sufferer has expiratory apneas.

What do you mean by this? Are you saying the patient inspires and then the airway closes at the end of a tidal volume?

hmp wrote: Most of these is just in the end of an inspiratory apnea. But some also have stand alone expiratory apneas.

I'm a bit confused here. At what part of the respiratory cycle are you saying apneas begin? From my work, and the work of others, most apneas begin towards the end/at the end of expiration i.e. passive airway collapse. I cannot categorically say that the airway doesn't collapse right at the beginning of inspiration because I didn't visualize the airway to see the exact point of airway collapse.

hmp wrote: Unfortunately you can't know if you have expiratory apneas. The normal PSG sleep study don't meassure that. Then you need a PES meassurement.

Couldn't you use the effort bands to determine if the apnea is inspiratory or expiratory?

DSM, thanks for the link. Very interesting and I need to read the other chapters when I get a chance. What she is describing is how I've been feeling. Can anxiety attacks last all day?