EstrellaJJ schreef: 18 nov 2023, 13:48
For the call with Krakow. He basically said I should've already experienced some degree of results from all the things that I have tried. He said indeed there is a strong chance I have UARS, it was especially my PLMD in my sleep test that triggered him to think this.
Well I guess the confirmation helps.
EstrellaJJ schreef: 18 nov 2023, 13:48
So I actually came up with a new theory. What if I am completely overtreating my disorder and in that process I just destroy any progress?
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I noticed this because everytime I would use something that is too high PS etc., I would notice I wake up to literally expel air from my mouth. Never happens at lower PS etc.
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This is the pattern number (2): cpap-induced insomnia. I do not have insomnia without CPAP.
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I am now considering the theory that
I might have been overtreating my UARS the whole time and I could be needing pressure support that is LOWER THAN 1 although I do realise that this is a wild theory.
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Well I will test this.
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So I am trying to figure out this conundrum right now. While of course I wait to go to Milan to actually get some doctor support hopefully with surgeries and the such.
It sounds plausible. Mouth leak can sometimes be resolved with higher pressure but can also be caused by too high pressure.
Were you also seeing CSA or ‘just’ the insomnia when using different ipap vs Epap.
Have you made any progress by increasing the cpap pressure slightly?
For me personally I’d prefer a solution with the cpap if possible, especially if you’d find a low static pressure that’s fixing the issues. You could then even use a small travel cpap in case you are travelling abroad. But I can imagine why a surgery that theoretically can erase all the machine and stuff would be tempting. Especially if the technology is not working properly for you.
Based on your story, the krakow book, the input from Hoeksel and reviewing my data, I’m also suspecting my body is not coping well with the high and variable pressures. Luckily Hoeksel also pointed me towards the N20 mask, which seems to keep my nose more open. The p30i as well as the f30i apparently were causing my nose to get stuffed in the 2nd half of the night. With the n20, I’m also able to go back to lower pressures and it seems this might calm things down while still opening up my airways.
Ironically I started my therapy with a nose mask, but couldn’t stand it because of the pressure on my nose. Afterwards I’ve only had masks that are blowing directly into the nose.
ResMed Aircurve 10 BiLevel VAuto, 8.0 PS5.0 - n20 neusmasker - slanghengel - Fixomull stretch mondtape - cpap hoofdkussen - Work in Progress (tm)