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StillAnotherGuess wrote:If you are having a volume issue the only cure is AVAPS. You may be on the wrong machine.

How would I know if I were having a volume issue, especially if it is happening when I am awake?

Paper_Nanny wrote:How would I know if I were having a volume issue, especially if it is happening when I am awake?

You do not have a volume issue. AVAPS is not the answer.

The problem is your MS is progressively decreasing your CO2 below normal levels. Hence, decreased breathing. That is why your patient initiated breathes are so low. You need to raise your CO2 level. Have you thought about plugging the vent holes in your mask and adding 2.0 liters of O2 in conjunction with your ASV "therapy"? The plugged mask holes (re-breathable dead space) allows you to inhale your exhaled CO2, thus raising your CO2 level to normal levels, whereby you will breathe normally on your own. The supplemental O2 prervents killing yourself on your own CO2. This "Re-breather" approach may sound a little draconian, but everybody has a right to breathe.

You would be best served to discuss any changes with a competent Doctor (not just a run-of-the-mill sleep doctor).

Paper_Nanny wrote:

Mr Bill wrote:O.T. I just realized your Avatar is your dog standing at the kitchen sink. For some reason, all this time I've glanced at it and seen a dog typing on a PC.

Yes, he is standing at the kitchen sink, washing dishes and eavesdropping on my neighbours for me. He isn't allowed to use the computer anymore. Not since he wrote down my credit card information and ordered himself a bunch of Death Metal CD's from Amazon. I probably never would have know he did it, except he forgot to turn the stero off one afternoon. I came home, saw it on, and he was busted. Just goes to show, you can never really trust a pit bull. Even when you've known him for years and he was always such a good dog, eventually, he's going to turn on you.

Deborah

Clearly, you haven't lost your sense of humor! Thank you for that laugh this morning.

StillAnother[b]Guess[/b] wrote:
The problem is ...

That is why...

You need to raise you CO2 levels...

will prervent you from killing yourself...

Rather confident assertions you make there, "Guess."

How many of the four edits you made to your post did it take you to add (thankfully!) this?

StillAnotherGuess wrote:You would be best served to discuss any changes with a competent Doctor (not just a run-of-the-mill sleep doctor).

Maybe this forum would be best served by your ceasing to use a look-alike nickname.

Mimicking the nickname of a well respected sleep professional (StillAnotherGuest) who has posted many times in ASV topics isn't a good idea, imho, no matter how amusing you thought it would be when you chose to create "StillAnotherGuess" as your new registered name.

OutaSync wrote:

Paper_Nanny wrote:Yes, he is standing at the kitchen sink, washing dishes and eavesdropping on my neighbours for me. He isn't allowed to use the computer anymore. Not since he wrote down my credit card information and ordered himself a bunch of Death Metal CD's from Amazon. I probably never would have know he did it, except he forgot to turn the stero off one afternoon. I came home, saw it on, and he was busted. Just goes to show, you can never really trust a pit bull. Even when you've known him for years and he was always such a good dog, eventually, he's going to turn on you.

Deborah

Clearly, you haven't lost your sense of humor! Thank you for that laugh this morning.

I laughed, too, when I read Deborah's clever post. Very funny!

rested gal wrote:Rather confident assertions you make there, "Guess."

If you listened more to "guest" you may have come to the same conclusion.

Data from last night... AHI= 8; PTB= 21.5 Any ideas on this one? I am feeling quite discouraged this morning. I am thinking I was better off before my sleep study. My apnea index is now higher than it was during my initial sleep study, but now I know there is something wrong and am concerned about it. This is maybe one of those cases where being in a state of ignorance with untreated apnea would have been more blissful?

OT: I was going to put the Crying or Very Sad face in the above section, but the more I looked at it, the more I thought it looked like a weird pug dog or a mutant boxer puppy. I am sad, yes, but not sad enough for that kind of face!

Paper_Nanny wrote:Data from last night... AHI= 8; PTB= 21.5 Any ideas on this one? I am feeling quite discouraged this morning.

They don't listen either, RG, so relax. I'm done here. Next?

StillAnotherGuess wrote:You do not have a volume issue. AVAPS is not the answer.

How do you know that?

StillAnotherGuess wrote:The problem is your MS is progressively decreasing your CO2 below normal levels. Hence, decreased breathing. That is why your patient initiated breathes are so low.

How would I know if that were true? Progressively decreasing CO2 during what time period? If the CO2 levels are decreased, does that say anything about the O2 levels?

StillAnotherGuess wrote:Have you thought about plugging the vent holes in your mask and adding 2.0 liters of O2 in conjunction with your ASV "therapy"?

I have thought about the vent holes being plugged by Dog's head at night when he uses me for a pillow and I have thought about them being plugged by large spiders, in particular brown recluses, but no, I have never thought about intentionally plugging them.

StillAnotherGuess wrote:This "Re-breather" approach may sound a little draconian, but everybody has a right to breathe.

Wow, that statement fueled a pretty intense ethical and political debate in my head and made me miss my children more than usual. This is the first summer neither of them are home. If they were home, I could make the statement, "Everybody has a right to breathe" and generate an entire days' discussion about it.

StillAnotherGuess wrote:You would be best served to discuss any changes with a competent Doctor (not just a run-of-the-mill sleep doctor).

Well, yeah, I would think so. If for no other reason than needing a physician's order to get the O2!

Deborah

StillAnotherGuess wrote:They don't listen either, RG, so relax. I'm done here. Next?

You talkin' bout me?? If so, I am confused by that statement. Clarification, please?

Paper_Nanny wrote:

StillAnotherGuess wrote:Well, yeah, I would think so. If for no other reason than needing a physician's order to get the O2!

Correct.

You have MS. MS attacks your brain stem. Your lower brain stem is the center for your respiratory drive. If the logic falls short there is nothing more to discuss. With me anyway. Good luck.

StillAnotherGuess wrote:You have MS. MS attacks your brain stem. Your lower brain stem is the center for your respiratory drive. If the logic falls short there is nothing more to discuss. With me anyway.

Yes, that logic did fall short. Nothing more to discuss with StillAnotherGuess, but for anyone else, I need to say this, as it is a common problem people with ms run into. According to the above logic, if I went to a doctor because I had broken my leg, it would be reasonible for her to say, "Well, you have ms. MS effects balance, strength, and ability to walk. That is your problem. End of discussion."

That example is silly because it is such an extreme example, but other less obvious situations of that nature have come up numerous times when dealing with my health care providers. And other people, also. I am fortunate that the man who was my primary care physician when I was diagnosed with ms drilled it into my head that I need to be aware of the extent to which that occurred and to be on guard.

I have ms, which has damaged my brain stem. That isn't the only possible cause of the problems I am having breathing while I am asleep. I am looking for other suggestions while I do some more research into the ms option. Any other suggestions for me??

StillAnotherGuess wrote:Good luck.

Best wishes to you, also.

Deborah

StillAnotherGuess, you are an ASS (and a chickenshit one, at that, for posting under this copycat name).

To anyone who's familiar with the regular long-time posters on this forum, you will NEVER be confused with StillAnotherGuest/Muffy/NotMuffy (or whatever other name he chooses to go by here). I do, however, worry about newbies who don't know the difference and might take your advice seriously...

Paper_Nanny wrote:Any other suggestions for me??

Yes.

Paper_Nanny wrote:I am feeling quite discouraged this morning. I am thinking I was better off before my sleep study. My apnea index is now higher than it was during my initial sleep study, but now I know there is something wrong and am concerned about it.

I wouldn't be discouraged because the above isn't entirely true. Remember that in your diagnostic sleep study, you were battling mostly apneas. Your problem now is residual hypopneas. The academic literature I've read says that yes, hypopneas should be taken seriously and treated, but it's a better problem to have than pure apneas. One of the problems with AHI as a statistic is that it treats all of these types of events as equal, when they are not. Another reason I wouldn't be discouraged is that you have good nights and bad nights. Your average long-term AHI still seems to be an improvement compared to your baseline diagnostic.

I would give it a few more days, but so far, your data exhibits many similarities to mine, JIMCHI's, and other posters'. Despite the underlying causes being different, that may ultimately be helpful. One of the questions I plan to ask my neurologist this coming Friday is precisely about such large variability in night-over-night hypopneas.

The increase in min PS could be having an iatrogenic effect upon your respiratory drive. This was the case for JIMCHI -- see viewtopic.php?f=1&t=60687&start=105#p573970. If this persists, -SWS's logic would suggest lowering min PS again and allowing the machine to increase it as needed. Remember that your ASV can change your IPAP very quickly with its breath-to-breath algorithms, while it adjusts EPAP more slowly.

Other than feeling discouraged this morning, how else did you feel? Are your current settings better, worse, or the same as your previous settings in terms of how you feel?

StillAnotherGuess wrote:Not with only 37 posts.

With due apologies to both Paper Nanny and JohnBFisher for my inability to turn the other cheek: I've read thousands of old posts here as part of getting myself educated, so I'm pretty familiar with the evolving cast of characters. Only one other poster has made the emphatic and ridiculous claim that ASVs will "burn out" if max pressure is set to a high value. That poster shares your writing style, your advocacy of rampant dial-twisting, your love for tweaking PS, and your propensity to state (incorrect) beliefs as fact. Miraculously, he stopped posting the very same day as you began -- even in the same thread! This doesn't strike me as coincidence.

I respond not because I'm worried about Paper Nanny taking to heart, say, the advice to plug her ventilation holes, but rather because people's searches lead them back to these posts days, weeks, months, and even years later. It would be tragic if a new ASV user took some of the things written here as gospel simply because the poster gave his advice using a sure and authoritative tone.

Paper_Nanny wrote:... I have ms, which has damaged my brain stem. That isn't the only possible cause of the problems I am having breathing while I am asleep. I am looking for other suggestions while I do some more research into the ms option. Any other suggestions for me?? ...

I emphatically agree with you.

Regardless of why you have problems with patient triggered breathing, the more that can be done to help keep you breathing well and eliminate apneas, the better it will be for your health. What is important - and you are trying to look into it - is to be certain that the therapy itself does not trigger problems with patient initiated breathing. Even if MS led to the break in the leg, it needs to be set and handled as you would any break. So, it is with your breathing.

In my book you are on the right path. Hang in there.