"Dying" To Find ST-A User to Help Me

[Notgivingupagain]

https://sleephq.com/public/50813628-e81 ... bc3ab15ab1


Hope I did this correctly. They also say I can share links of points of interest. Let me know if I need to do this.

[Notgivingupagain]

Hi again.

If it is ok, I'd like to share something Sleeprider posted in my thread on the "Other Board". As I stated in a very early post here, he has been trying to help me since 2019 and knows about all the machines and stuff I have been dealing with. Maybe it will help here?

Let me know if I should post here what he most recently said? If not, that's ok. But it would be interesting to get your views on his latest idea to try.

Respectfully,
Phoebe

[Pugsy]

We don't have a problem if you post here what SleepRider has said to you.
Whether or not he might have a problem....that's between you and him but we don't care.

[Notgivingupagain]

Thanks Pugsy. He doesn't mind my interacting here, he just wants me not to blindside him on advice and stuff.

So, that being said here is a portion of his latest comment:

My recollection over the spectrum of devices you have used is that you have a chronic, intermittent inspiratory flow limitation that results in all auto-algorithms seeking the maximum set pressure. Your flow limits respond reluctantly, or not at all to either increased pressure or pressure support. Your respiration seems to meet your volume needs, even with less pressure support than you are currently using. We could probably use some flow rate zooms of your current therapy to verify this is still the case, and be sure to include a mask pressure graph.

When we reduced your EPAP max and increased the respiration rate, your results became more "normal", but I still think your respiration is mostly driven by the machine rate and pressure support. In the current charts, this appears to be true for all sessions except after 06:00. There does not seem to be any significant advantage to increasing EPAP max pressure back to 15 as there was nothing that looks better with the crazy high 30/15 pressure. I'm actually thinking more along the lines of dropping EPAP max back to 10 and reducing PS max to 10 to try to wean you off the machine pressure. As I said before, I am yet to see any pressure or algorithm that resolves the apparent flow limits better at higher pressure than at lower pressure.

[Notgivingupagain]

MEDICATION LIST:

Divalproex Sodium (Depakote)

Aripiprazole (Abilify)

Buspirone (Buspar)

Amlodipine (Istin)

Atorvastatin (Lipitor)

I have been looking up side effects and many of them could be causing problems. However, I wasn't on most if any of these medications in the past years.

[robysue1]

https://sleephq.com/public/50813628-e81 ... bc3ab15ab1


Hope I did this correctly. They also say I can share links of points of interest. Let me know if I need to do this.

You did it correctly.

Don't worry about sharing the links of points of interest: Rubicon should find the areas he wants to look at by zooming in on the data.

[robysue1]

https://sleephq.com/public/50813628-e81 ... bc3ab15ab1


Hope I did this correctly. They also say I can share links of points of interest. Let me know if I need to do this.

I know it's going to sound strange, but ....

Could you also post this night's detailed data in Oscar? The whole night view is fine. The problem is that SleepHQ messes up the pressure graph for bilevel machines---it does not graph the EPAP and IPAP pressures separately. So we can't see when the machine is ramping up the IPAP the way we can in the Oscar graph. And that will be useful.

[robysue1]

Notgivingupagain,

Given this diagnostic sleep study, how on earth did you wind up on a Resmed AirCurve 10 ST-A running in iVAPS mode?

Were you ever put on a simpler machine like a Resmed AirSense 10 AutoSet? If so, what caused the doc(s) to prescribe the ST-A in iVAPS mode?

[Notgivingupagain]

https://sleephq.com/public/50813628-e81 ... bc3ab15ab1


Hope I did this correctly. They also say I can share links of points of interest. Let me know if I need to do this.

I know it's going to sound strange, but ....

Could you also post this night's detailed data in Oscar? The whole night view is fine. The problem is that SleepHQ messes up the pressure graph for bilevel machines---it does not graph the EPAP and IPAP pressures separately. So we can't see when the machine is ramping up the IPAP the way we can in the Oscar graph. And that will be useful.

Ok. Please tell me EXACTLY what order you would like the graphs? But I may not get to it until tomorrow am, my husband just got home and he is requesting my attention.

[Rubicon]

BTW if you're going to be making changes, and since you've had documented significant desaturations, it would be a wise investment to get a pulse oximeter that can be downloaded (uploaded?) directly to Oscar and SleepHQ to insure your changes are appropriate. Wellue O2 Ring is a popular model (it's a little coarse, but it'll work).

[kmkz58]

Sorry, I've been on IVAPs for a while, but I don't know how to help with your flow limitations and oxygen desats. My apnea is caused by chronic hypoventilation.

The ultimate fix for leaks, however, is silicon earplugs such as Mack's brand or similar. You make a gasket with it and stick it on your mask, it is BY FAR the most effective way to stop leaks, but keep in mind that small pieces of silicon putty can sometimes break off and become a choking hazard, although I have never had an issue in the years that I've used it. Also, It costs less than paying for a new f20 cushion every month, because your cushion no longer needs to be replaced often, the gaskets become the new cushion. It takes 2 plugs to make a cushion for a medium size f20 mask. Each gasket can be used anywhere between 1 to 3 nights, depending on how greasy your skin is. I also recommend washing your face with a mild shower gel before using a mask or something that won't dry your skin too much, otherwise it will produce the opposite effect of making your skin release more grease. Make sure your skin stays moisturized throughout the day as well to keep it soft, smooth and more adhesible for the cushion.

I have two small cutting boards made of unbreakable, tempered glass. One has rubber feet to keep it from sliding, while the other is completely flat. I use them to roll each ear plug into a string, then combine them together into a shape of the mask cushion. Both the bottom and the top part of the gasket should be connected end to end, not side to side in a v pattern, otherwise it's going to split. Once you create a rough shape of your gasket, put it between plastic sheets, like two pieces of a Ziploc bag, and press it hard between the two boards, putting all your weight on it. The board on the bottom should be flat laying on a hard, flat surface, such as near an edge of a sturdy table or nightstand. You would have to put your weight repeatedly in various places to get it this flat as it goes. Alternatively you can use a vice or something similar. Just make sure you use wooden blocks to cushion the glass if you are using glass boards like I do. To save money on ear plugs you can stretch the strings between rolling them, and stretch them again after you've pressed them until they are the right size. When applying the gasket to the mask make sure the inside edge of the gasket is aligned with the inside edge of the mask cushion. It's good for the gasket to go over the outside edge of the mask because the way f20 mask is designed is that it rolls inwards, with the outside edge taking most of the pressure.

A new gasket is kind of tricky to put on a new f20 cushion because it will not stick, however, you can put as many gaskets on top of it as you like, and they will stick to each other very well. Of course that would mean that the size of your cushion will eventually become smaller. If you are okay with that, you can save money on your plugs by putting them on top of each other, and after two layers of two plugs each you can create layers with just one plug. For me personally I only go up to four layers.

Also, I HIGHLY recommend you try herbal medications first, for sleep and relaxation, such as Valerian and many others, before you go and take prescriptions ones. And whatever you do, stay away from Clonazepam and other benzos, they are extremely addictive and you will pay for it if you take it long enough. You will need to continuously increase the dosage the longer you take it, and you will suffer withdrawals if you ever decrease dosage.

Hope this helps.

[robysue1]

https://sleephq.com/public/50813628-e81 ... bc3ab15ab1


Hope I did this correctly. They also say I can share links of points of interest. Let me know if I need to do this.

I know it's going to sound strange, but ....

Could you also post this night's detailed data in Oscar? The whole night view is fine. The problem is that SleepHQ messes up the pressure graph for bilevel machines---it does not graph the EPAP and IPAP pressures separately. So we can't see when the machine is ramping up the IPAP the way we can in the Oscar graph. And that will be useful.

Ok. Please tell me EXACTLY what order you would like the graphs? But I may not get to it until tomorrow am, my husband just got home and he is requesting my attention.

I'd include the following graphs in this order:

Flow Rate
Mask Pressure
Leak
Tidal Volume

Enjoy hubby's attention

[Rubicon]

First Example:

That same bizarre pattern for machine breaths appears in the SleepHQ D/L during a period of massive leaks.

Paul Harvey Syndrome.

[robysue1]

First Example:

That same bizarre pattern for machine breaths appears in the SleepHQ D/L during a period of massive leaks.

Paul Harvey Syndrome.

Yep. I noticed that. Are the massive leaks causing the weird shaped machine breaths in the flow rate? If so, why or how?

What about the rest of the night? Mostly machine breaths? Or mostly spontaneous breathing? Or too hard to tell without the mask pressure data?

[robysue1]

Question for Rubicon:

Are these also machine breaths? I ask because Notgivingupagain's SleepHQ data seems to be full of this kind stuff, and it's not when the leaks are sky high.

AS DECENT SHAPE I CAN FIND?

And if most of the night is spent with the machine sculpting the breaths and triggering the inhalations, is that something that could disrupt Notgivingupagain's sleep?