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Re: WTF is wrong with UARS treatment in the Netherlands

Heyoh, just an update. I have been diagnosed in Germany (you may know already from other forums) with UARS. Finally, goddamit this was difficult to diagnose. [...] While I do know where to go in Germany already, [...] In germany, I have been told the recession of the jaws is enough that it would / ...

Re: WTF is wrong with UARS treatment in the Netherlands

Heyoh, just an update. I have been diagnosed in Germany (you may know already from other forums) with UARS. Finally, goddamit this was difficult to diagnose. I have partial relief with BIPAP + MAD. Not a stable situation. The objective now is to do palatal expansion in Germany and then jaw surgery e...

Re: WTF is wrong with UARS treatment in the Netherlands

So ok looks like I might be able to get such an appointment as well so hopeful for that. In the end I need this diagnosis otherwise any surgery is impossible Anyways for the meanwhile I am still wondering why this pap thing isn’t working for me. Was wondering if anybody can put their two cents. So b...

Re: WTF is wrong with UARS treatment in the Netherlands

Yeah I am not opposed to ASV, could try that. Although I am a bit uncertain because at 3.5 I think I don't see central problems anymore. I think thelankylefty27 can help me out on zeroing in on pressure. Probably once I have more stable numbers here I can try also the quasi-ASV approach with the var...

Re: WTF is wrong with UARS treatment in the Netherlands

Hey, so long story...hope you can stick with me in this long post. Pardon me if this is confusing but I think I am so far off from my best settings so things change quite a lot over the days For the call with Krakow. He basically said I should've already experienced some degree of results from all t...

Re: WTF is wrong with UARS treatment in the Netherlands

I understand, let me try to be specific On Nov. 1st, I woke up at 3.15am-ish for a bathroom break let's try to understand what happened..maybe there is a clue in there about what is not working. This was the best night in terms of feeling on the next day. These are my screenshots: 01.jpg 02.jpg What...

Re: WTF is wrong with UARS treatment in the Netherlands

Well Barry Krakow is available as long as you can fork $300 for a call lol. I am not familiar with Cyclic alternating pattern, but I googled that and the name of the hospital (San Raffaele, Milano) and the name of the chief physician I am going to speak with came up on a research about that, authore...

Re: WTF is wrong with UARS treatment in the Netherlands

Hey some updates. My nose is doing better. The real deal nasal spray seems to have been Dymista, it is stronger then the ones that are available over the counter. I am now attempting to try PAP again. I am now seeing I have central apneas problem at min.PS of 3.5. Interesting. Wondering if that's be...

Re: WTF is wrong with UARS treatment in the Netherlands

Hey guys how are you all doing? Just wanted to write an update here. Trying to keep the thread alive both for myself and future explorers of UARS in NL I am reading currently Barry Krakow's latest book Life Saving Sleep. The book is very good. One point in the book that was really helpful was on non...

Re: WTF is wrong with UARS treatment in the Netherlands

My sleep study (3% rule) was basically zero apneas, only hypopneas and garbage fragmented sleep (RERAs not disclosed) so I am really thinking of at least keeping PS where it is. I am terrified of bringing that lower. So raising EPAP I mean with constant PS. It is also my understanding that maxPS sho...

Re: WTF is wrong with UARS treatment in the Netherlands

Hey some decent news. The F30i is a match. No skin bruises, no Co2 rebreathing. So that's good. Flow rate appears a bit better than before. Check out this comparison: https://imgur.com/a/aw8H5X2 The one above is starting to get a more reasonable shape. Problems remain. I woke up at 4am, and then at ...

Re: WTF is wrong with UARS treatment in the Netherlands

Hi both thanks for responding :sob: So my mouth leaks are unstoppable to be honest. No amount of tape or anything. Tongue is theoretically in the right place when I fall asleep. Weird things happen as the night progress Still I tried to make nasal pillows work so hard because I was completely trauma...

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