CPAPtalk.com

GeneMpls wrote: ↑

Tue Nov 15, 2022 2:57 pm

the sleep issue did not bother me the first 75 years?

Alternatively, perhaps something has occurred relatively recently to account for some of this. That said, it's academic. This is the hand you got now.

ozij wrote: ↑

Tue Nov 15, 2022 12:03 pm

And in this paper - which is helpful: The Pathogenesis of Central and Complex Sleep Apnea , but not enough...

Those guys discuss circulatory delay:

Some controversy exists regarding the importance of circulatory delay towards unstable breathing... In studies that have compared circulatory delay in heart failure patients with and without CSB, in general circulatory delay is similar in the 2 groups suggesting that the delay is not a critical factor in most cases. On the other hand, heart failure is associated with longer delays, and improvement in circulatory delay, e.g., via cardiac resynchronization therapy (CRT), leads to small improvements in apnea. Thus, in aggregate, the data suggest that some amount of circulatory delay is necessary, but delays alone are not sufficient to induce unstable breathing patterns in most clinical situations.

Consequently, we needed to do our due diligence and look grossly at EF to see if that was going to be a component in our loop. Since our working number is ~65-70% IMO we don't need to be concerned about that right now.

Indeed we can look at cycle time:



If my adds and substracts don't fail me, 40 Events/30 Minutes = Event Index 80 = Cycle Time 45 seconds (spot checking shows a lot of cycle times ~40 seconds). CSR cycle time by definition is at least 45 seconds but in practice is like usually 60 - 90 seconds. I can see why CSR gets scored quite a lot in the ResMed algorithm but it's not like at 44-second cycles you're normal and at 45-second cycles your heart falls out. IMO the CSR flag is simply a "Hey! Look here! Something might be happening!" alert.

Rubicon wrote: ↑

Thu Nov 03, 2022 2:21 am

GeneMpls wrote: ↑

Wed Nov 02, 2022 8:22 am

I will call today to make an appt with a lady doc at the same office- I usually communicate better with females.

Yeah well you better hope she has skilz and not just big bazongas.

So let's get back to your appointment.

You working on a plan? You got the gist of what's happening here?

If all that babe looks at is numbers she's gonna see like AHI 10 when in reality your Event Index (EI)(OK I made that up.)(I make a lot of stuff up.)(Like harmonic resonance. But it works and should become vernacular soon) is like 80. You need to wave these pictures at her. Especially the oximetry. It's significant (I'll stop short of Panic Button cause nadir is 83-85% but the index is 33 in the second download you presented).

Rubicon wrote: ↑

Tue Nov 15, 2022 12:45 pm

As an aside, most CompSAS will resolve on it's own after about a month, but here we're still wicked bad at 3.

BTW the incidence of unresolved CompSAS is only ~1.5%, so if she says "That hardly ever happens!" she'd be right.

Another option could be have Pugsy clean up this thread and email the link to your person and say "Have I got an interesting story for you!"

Rubicon wrote: ↑

Wed Nov 16, 2022 5:28 am

Rubicon wrote: ↑

Thu Nov 03, 2022 2:21 am

GeneMpls wrote: ↑

Wed Nov 02, 2022 8:22 am

I will call today to make an appt with a lady doc at the same office- I usually communicate better with females.

Yeah well you better hope she has skilz and not just big bazongas.

(OK I made that up.)(I make a lot of stuff up.)(Like harmonic resonance. But it works and should become vernacular soon) is like 80.

Sorry but the key of C and Tacoma Narrows Bridge and I can’t let you take claim of harmonic resonance. https://youtu.be/5sTV-q9jAQA

But seriously- been trying to follow along and I can’t tell what is typically done to treat the issue.

Can’t tell if it’s a heart or lung issue or something else.

Rubicon wrote: ↑

Tue Nov 15, 2022 3:12 pm

GeneMpls wrote: ↑

Tue Nov 15, 2022 2:57 pm

Did you ever boil a frog?

I have not, but I may have licked a toad... and partaken of illegal mushrooms. Are you done with your analysis? If I tried to explain this to a human being I would surely be locked up in an unusual persons asylum. I do not have enough time left on this earth to understand what y'all are saying, I am afraid. I am hearing that this is not going to be a simple fix, if a fix is even possible. I am feeling semi-funtional again today, maybe that is all that can be done. Thanks to all, Gene

GeneMpls wrote: ↑

Wed Nov 16, 2022 9:02 am

If I tried to explain this to a human being ...

You don't don't have to explain it to another human being. You're paying people to understand it for you.

I gave you 2 simple things:

Call up your physician and tell her you need a ResMed Adaptive Servo Ventilation unit:

https://www.resmed.com/en-us/healthcare ... ve-10-asv/

When she asks why give her the link to this thread.

If after that she says "Huh?" get another physician.

Frankly, seeing the mess you're already in, I'd be looking for another service.

GeneMpls wrote: ↑

Wed Nov 16, 2022 9:02 am

I am hearing that this is not going to be a simple fix...

Yup.

Everybody expects there's a magic button on their machines that they simply have to find and press and all will be right with the world.

Lemme tell ya kid, it don't work that way.

Rubicon wrote: ↑

Wed Nov 16, 2022 9:11 am

GeneMpls wrote: ↑

Wed Nov 16, 2022 9:02 am

If I tried to explain this to a human being ...

You don't don't have to explain it to another human being. You're paying people to understand it for you.

I gave you 2 simple things:

Call up your physician and tell her you need a ResMed Adaptive Servo Ventilation unit:

https://www.resmed.com/en-us/healthcare ... ve-10-asv/

When she asks why give her the link to this thread.

If after that she says "Huh?" get another physician.

Frankly, seeing the mess you're already in, I'd be looking for another service.

Adaptive Servo Ventilation is a totally different way of treating your breathing problems
You need it because when CPAP treats your breathing disturbances your body gets into a vicious cycle of breathing a lot, then breathing too little, over and over and over again, and while this happens your oxygen sinks to where it shouldn't be.
The rest of the thread is reasons as to why this happens to some people - and not to most.

The drive to breathe is based on the amount of CO2 in our blood. In your case, CPAP therapy is messing up with your drive to breathe, because it's messing up with the amount of CO2 in your blood. Too little CO2, and your drive to breathe diminishes.

GeneMpls wrote: ↑

Wed Nov 16, 2022 9:02 am

I am afraid. I am hearing that this is not going to be a simple fix, if a fix is even possible. I am feeling semi-funtional again today, maybe that is all that can be done. Thanks to all, Gene

Where you are at now is definitely not all that can be done. You need a different kind of machine. And a medical team that understands the need.

Oh...there is definitely a fix available and it's fairly simple....ASV machine.
It's the getting the medical care team to prescribe it that is going to be the not so simple task.
In fact if the doctors don't understand what is happening....that is your very first big hurdle.
They either need to get educated or you need to go doctor shopping.

While it is true that a lot of people who develop CompSas will have it resolve itself naturally with a bit of time.....it's been 3 months and it hasn't resolved yet and it's extremely unlikely that any more amount of time is going to bring about resolution.

You drew the short straw twice...once in the fact that you joined a relatively small percentage of people who find that using cpap causes the unstable breathing that is happening with the centrals and second with the even smaller percentage of people, that you have joined,
who time doesn't help resolve the problem.

You are very special.

Ask your current medical care team just how much of the "give it time" they want to give it before they decide to do something other than "wait and twiddle thumbs".

You are very special. an old fat man cannot hear that too much, thank you for the thought Pugsy. I am going to have to give this a lot of thought when my mind is clear[er]. If the ASV[?] was a $1000 like the cpap machines I would buy one [and buy a prescription too] but for $3k I am not so much a gambler [I have never gambled, except in business]. Thank you all for all the effort in this gigantic thread. I am not sure where I thought this was leading, but just having a direction feels like a step forward. Gene

Sometimes ASV machines can be found that don't cost an arm and a leg and people can afford to buy one on their own but you really shouldn't have to do that. Your medical care team needs to get off their butts and do what is needed for your insurance to do its part in the purchase.

The squeaky wheel gets the attention....you need to be the squeaky wheel.

Pugsy wrote: ↑

Wed Nov 16, 2022 10:14 am

Oh...there is definitely a fix available and it's fairly simple....ASV machine.
It's the getting the medical care team to prescribe it that is going to be the not so simple task.

Huh, and I happen to have two of those for sale. :ponder:

palerider wrote: ↑

Wed Nov 16, 2022 7:33 pm

Pugsy wrote: ↑

Wed Nov 16, 2022 10:14 am

Oh...there is definitely a fix available and it's fairly simple....ASV machine.
It's the getting the medical care team to prescribe it that is going to be the not so simple task.

Huh, and I happen to have two of those for sale. :ponder:

You still have those 2???? I would have thought they were long ago gone and spoken for.

To Gene.....something to think about and Palerider can help you get things dialed in. These machines belonged to PR's late brother.