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AHI from below 5 to 22!
#11
(12-18-2015, 10:23 AM)cmk17 Wrote: Thank you vesheline!

I have lowered my EPR to 1. I have tried to use the bigger pillows but find that I have leaks with the small pillows versus the extra small ones. I will try again to see if I can better tolerate them.

I will need to work with my sleep doctor to modify my settings -- even though I know how to do it myself. Both my DME and my doctor get angry when I change the settings. They tell me how it's illegal and a criminal offense (or something like that) to modify the machine without a new prescription. I don't know how to respond to that!

Best,
cml17

Tell them to go f*ck themselves and get different help. They are giving you the rooky horse shite bs. Just adjust it, and tell them you are not a child.
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#12
(12-18-2015, 10:23 AM)cmk17 Wrote: I will need to work with my sleep doctor to modify my settings -- even though I know how to do it myself. Both my DME and my doctor get angry when I change the settings. They tell me how it's illegal and a criminal offense (or something like that) to modify the machine without a new prescription. I don't know how to respond to that!

I would agree that it's always best to work with your sleep doctor when making changes to your therapy, as long as your sleep doctor agrees with the fact that it's best to have the patient involved and have a good understanding of how their machine works. If your doctor is one of those types of egotistical know-it-alls who talks down to patients and insists they don't have the mental capacity to understand how xPAP therapy works, I'd find myself another sleep doctor. A truly helpful doctor would love it if a patient would educate themselves and play a more active role in their own therapy.

I would not trust a DME or a doctor who has a habit of lying to their patients. It is not illegal nor a criminal offence for a patient to change the pressure settings on their own, legally-obtained machine. It may be a violation of FDA regulations for the DME to change the pressures without a prescription from your doctor... but the patient is not regulated by the FDA, and is free to do whatever they darn well please with their own machine.

Coffee
SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com


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#13
(12-18-2015, 10:23 AM)cmk17 Wrote: I will need to work with my sleep doctor to modify my settings -- even though I know how to do it myself. Both my DME and my doctor get angry when I change the settings. They tell me how it's illegal and a criminal offense (or something like that) to modify the machine without a new prescription. I don't know how to respond to that!

Best,
cml17

Really? Time to get new doctor and provider. You are as big a part (if not bigger) of your own medical team as they are. It is neither illegal or criminal. Be firm. Good luck.
Coffee
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#14
Dear sonicboom, supersleeper and others:

Thank you! I agree. My sleep doctor doesn't seem to understand the data set from my apnea machine. She seems to rely on preset information and looks at me like I am nuts when I ask about specific things. At the end, she gave me a script based on what I requested for the settings. I like that she was responsive; I don't like that she seemed to have nothing to add. I will take your recommendations and do some more research. I am in NYC and there has to be a dozen sleep doctors per mile on this small island!

Meanwhile I was using the small pillows for my airfit p10 for the past week and my AHI has moved from under 3 to above 5 consistently. And I wake in the middle of the night feeling like air is being forced up my nose. I haven't been able to sleep more than 6 hours a night because of my discomfort. I know that the flow limitation of the extra small might be a problem -- but at this point, I need to do some balancing of the pros and cons. I am really worn out, not sleeping comfortably and drowning in air -- even though my air pressure numbers are lower than they were with the smaller pillows. (Of course that makes sense -- to get the right treatment with narrower pillows, a higher volume of air needs to be pushed through!)

I might be one of those people who has a tiny nose and tiny nostrils for which the XS pillows were made. I'll keep track of my numbers and comfort and see.

Thank you for all the support!

Best,
cmk17
___________
"The obscure we see eventually. The completely apparent takes a little longer." Edward R. Morrow
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#15
(12-28-2015, 09:36 PM)cmk17 Wrote: Meanwhile I was using the small pillows for my airfit p10 for the past week and my AHI has moved from under 3 to above 5 consistently. And I wake in the middle of the night feeling like air is being forced up my nose. I haven't been able to sleep more than 6 hours a night because of my discomfort.

Well, the feeling is accurate because that's what *PAP does, forces air up your nose. Feature, not a bug. But it may take getting used to. And you get used to it by keeping on sleeping with it. Eventually you will see it as simply normal. If it's too uncomfortable you can try different sized pillows or a different mask or mask type. Getting the right mask seems to be pretty much the most difficult part of the whole business if I read the posts on the subject correctly.


Ed Seedhouse
VA7SDH

The above is my opinion.  It is just possible that I may, occasionally, be mistaken.

I am neither a Doctor, nor any other kind of medical professional.

Everything put together sooner or later falls apart.

Your brain is not the boss.
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#16
Dear eseedhouse:

LOL. ;-)

With the wisp, I loved the feeling of lots of air. With the xsmall airfit p10 pillows, it was all good. And I had good results even though my pressure numbers were high. But with the small pillows, I have air blowing into my eyes and I feel like I'm drowning. My pressure numbers are lower but my AHI readings are much higher (i.e., worse.)

Yes -- I have been shopping around for the right mask and am still trying to balance out comfort along with adequate treatment. I've used the Dreamwear, Wisp and Airfit p10. So far I love the simplicity of the Airfit p10 and it supports my rolling around all night (except for the occasional hose wrapped around my neck.)

Sleep well,
cmk17
___________
"The obscure we see eventually. The completely apparent takes a little longer." Edward R. Morrow
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