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UARS
#71
RE: UARS
I just had a chance to look at these.  Cool! 

I'm not totally clear on what you're suggesting that I do.  I thought the first thing to do was to slowly raise the PS by 0.2cm increments, giving my body a chance to get used to each increment for a few days.  Then once I've settled on a PS that works well, start working on what EPAPmin to choose?

The other thing I'm sort of struggling with is that FLs are so drastically influenced, for me, by how my nose is functioning during different time periods during the night.  If I can lay on my back without a pillow, my nose works o.k. and I have less FLs and sleep more soundly.  At some point during the night, my back is sort of hurting from laying in one position for so long and I switch to side laying, where my nose doesn't work so well and then I start having FLs and RERAs.
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#72
RE: UARS
(10-25-2019, 03:05 PM)tarah Wrote:  .... .first thing to do was to slowly raise the PS by 0.2cm increments, giving my body a chance to get used to each increment for a few days.  That is....your first four points in the graph PS x Median RR suggest your optimum PS would be between 4.2 and 4.8 (likely 4.4); but would  needsome more few points to pin-point the value....to get this we would have to estimate your average normal RR while sleeping (lab studies....hands on stomach counting  * 0.89...etc).
Then once I've settled on a PS that works well, start working on what EPAPmin to choose?...that is..you could  start with your current EPAPmin: 6.0 or lower value. Actually, you could play with PS and EPAPmin, but not changing both  at the same time. What is important is imediatelly start counting your RERA''s-driven awakenings; that's going to be  thereference for your optimum EPAPmin+PS (= projected zero on the graph EPAPmin x RERA(flag+unflagged).
By the way, not long Ago, i found out that is not good set IPAPmax > EPAPmin+PS. That because, we UARS sufferer are hypensensitive to any stimulus (any ridiculous flow reductions, any ridiculous noise, subtle pressure increase), and therefore we awaken easily, and during these awakenings Very often are created false events, which become target for the machine increase unecessarily pressure, disrupted further our sleep. I did this and the result was good, bumps in pressure are prohibited! We don't need such bumps, as soon as we are moving to fine tune EPAPmin+PS.


The other thing I'm sort of struggling with is that FLs are so drastically influenced, for me, by how my nose is functioning during different time periods during the night.  If I can lay on my back without a pillow, my nose works o.k. and I have less FLs and sleep more soundly.  At some point during the night, my back is sort of hurting from laying in one position for so long and I switch to side laying, where my nose doesn't work so well and then I start having FLs and RERAs. Well, this a point i had not considered thus far. It may happens you would have to work out  these problems before anything else (i understood your surgery would be necessary?), otherwise what we have been suggest would work as Just a semi-quantitative approach for your case in general. It would may occur surgery would work out everything, including become unecessary using BPAP (thanks Prana!).
BTW, have you already read Dr. Steven Park's all publications on UARS? If not; strongly recommend.
Good luck

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#73
RE: UARS
The state of my turbinates is my single biggest obstacle in CPAP. Several things I’ve learned:

Afrin is awesome at the time, but there’s hell to pay starting about 20 hours later. Rebound lasts just as long as the relief, and it’s brutal.

Nasal steroids help a little, but I think they also contribute to blood vessel engorgement and possibly proliferation. I’m trying to cut back.

Nasal spray containing capsaicin WORKS. Capsinol is hardcore, and awesome. Xlear Max is milder, and more moisturizing.

Pressure works just like a compression sock for my turbinates.
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#74
RE: UARS
Never heard of the capsacin spray. I will look for it.

Yah, I'm only using afrin for 3 days as a test of whether I will need surgery on turbinates or septum. Even with the afrin, I can't lay on my side and breathe through my nose by morning. So it seems I will probably need some septum reduction. I'm just going to rely on Neti Pot and nasal antihistamines until then.
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#75
RE: UARS
Phew.  Last night was not fun.  So many awakenings.  This kind of difficult breathing all night long.  

Next step I guess it to begin raising PS by 0.2 cm increments and see how things go.  I am feeling so discouraged right now.  Does everyone here have nights like this interspersed with good nights??  Sometimes it's so hard to remain hopeful that I can eventually sleep well again Sad
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#76
RE: UARS
(10-26-2019, 11:42 AM)tarah Wrote: Phew.  Last night was not fun.  So many awakenings.  This kind of difficult breathing all night long.  

Next step I guess it to begin raising PS by 0.2 cm increments and see how things go.  I am feeling so discouraged right now.  Does everyone here have nights like this interspersed with good nights??  Sometimes it's so hard to remain hopeful that I can eventually sleep well again Sad

Yes. I keep notes to help remember the good nights, and to track progress; and therefore to try not to get discouraged. 

For example, wasn't even last night better than a couple weeks ago?

But yeah, some nights just go not so well.

Keep in mind you're simultaneously dealing with a complex set of variables, including your nose, and needing to give your body/brain time to adapt to the changes. Can take awhile.
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#77
RE: UARS
Yes it was still better than a few weeks ago.  I was not awake for long stretches during the night.  I stayed up too late reading was part of the problem with tiredness today.  Thanks for the encouragement.
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#78
RE: UARS
Being diligent about sleep hygiene can help too; like going to bed and getting up at a consistent time ;-)
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#79
RE: UARS
How exactly are you counting unflagged events?  I cant tell from the flow rate graphs what it is a respiratory arousal event?
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#80
RE: UARS
(10-26-2019, 12:55 PM)tarah Wrote: How exactly are you counting unflagged events?  I cant tell from the flow rate graphs what it is a respiratory arousal event?

I don't think so, but it can show you where to look more closely.
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