Increasing min ps sounds like a plan and what I would do in this case.

Note, I’m still struggling as well, so this is not an expert opinion but my resmed asv also does not catch up all the time, increasing min ps does seem to help. In my case max ps then also increases which triggers aerophagia every now and then.

Btw, how did your call go with Krakow?

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 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.

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?

Confusing I know but let me explain why I now suspect this.

I have started to see "repeated patterns" in my long CPAP use so that I think I am able to better understand what is going on when certain things happen. For example:
1) strong mouth leaks even with mouth tape. This is TOO MUCH pressure. Here is the proof:
This is what typically happened recently:


--> compare this with what happened when I lowered the pressure and PS:

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.

Lower PS, mouth leaks gone!

So now we found out the impossible-to-control mouth leaks are caused by too much pressure, too much PS etcetera. They also happen at pressure of like 9 and PS of 0.5. Just too much pressure and too much PS will cause that to me.

So you would think, well just continue with that approach you just tried above then! Well there is only one problem. That day I woke up feeling HORRIBLE. I only got like 4 hours of sleep and could not go back.

This is the pattern number (2): cpap-induced insomnia. I do not have insomnia without CPAP.

Now I have to find out what the fuck causes the CPAP-induced insomnia. I think I have a strong theory here.

The CPAP insomnia happened at pressure of 7/6. This also happened at PS / EPR of 3, 2 etcetera, like 7/4, 8/5 etcetera. Interestingly enough, at 6 fixed it DID NOT HAPPEN! At pressure of 6, a bunch of things happen like flow limits, hypopneas but overall much better feeling the next day than 7/6 (since I don't experience insomnia), strangely enough. What if this pattern is caused by excessive Co2 washout? That would explain why it specifically happens at 7/6 while it never happens at 6/6

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.

It is possible though, which would explain why I also seem to be doing better than many other UARS people (never been bedbound or non-functional, just very fatigued and depressed). Maybe my UARS is just not that difficult. Subtle sure but maybe just not that severe that it needs all this pressure, variable PS etcetera

Well I will test this.

So now I know, pressure at 9 is too high (triggers mouth leaks etcetera). Pressure of 6 (fixed) doesn't fix the issue (flow limits show up, I rip off the mask in the night unconsciously etc.). But pressure of 7/6 or such differentials will cause this CPAP induced insomnia strangely enough.

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.

I wonder if there's a place in the EU where you could have a titration night. Where the doctors fiddle around with several PAP settings to figure out a good titration. I believe Krakow was doing that with his patients.

Or a step back, a sleep event where they film the inside of the throat and so ... .

Well yeah if the sleep centers were better all of this pain would've been avoided of course...

But here in the NL they're just garbage (I have heard some horrid quotes coming from sleep doctors including "it's only a problem when AHI goes above 30/h" and "you breathe well because your oxygen is fine")

Maybe the one in Milan would.

Meanwhile I have used fixed pressure of 6 and can confirm there's flow limits (not an obscene amount) and hypopneas (unclear whether real obstructive or post-arousal central style). Overall felt some small progress at pressure of 6. Then I increased to 7 and progress erased...interesting uh?

Overall my current understanding is that I could find finally relief at somewhere around 4-7 pressure, either fixed or with some PS / EPR in the 0.5-2 range. Again just a theory but will try. Would definitely be a bizarre case if that turns out to be true.

If not honestly I will probably give up and beg for surgeries.

Most folks in the BE/NL have to deal with average outcomes based on AHI unfortunately. It's babysteps for years here now. Never in detail. Same is true for many other operations. Far behind optimal succes rates. Always a better or non invasive option that you just can't find here yet for decades.
I am following Vik Veer on YouTube. That might be an option as well because it's in English and he is redefining the protocols in the UK. He likes to find the root cause.
I think you did go quite fast in changing levels so all of your conclusions might be temporarily. I'm still guessing after one year of CPAP as well.

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?
….
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.
…
This is the pattern number (2): cpap-induced insomnia. I do not have insomnia without CPAP.
…
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.
…
Well I will test this.
..
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.

Alright some updates.

Milan was garbage, it was the usual story of "but your AHI is low". Jesus all they could offer was a repeat PSG which I don't think i will take. The whole world seems so behind the curve in terms of UARS, these guys still wondering what I have

Meanwhile I consulted with Jason (thelankylefty27 on Youtube). He was very helpful. He opined that my airway seems to open somewhere around IPAP 11-13, now he is wondering what PS will I need.

There's questions now on the PS because at 13/9 I will get centrals. I have experimented with an EERS (for example 13/9.5) and I mean it does help with centrals but is loud as hell and it's not clear if I need it or if I just need lower PS.

Meanwhile I have tried 13/9.5 like I said and it was decent. I woke up at like 4 am with some aerophagia. Removed the mask and slept the rest without. And still, those 4 hours of sleep were very good - had the best day in a while the following day.

So there is some hope!!!!

I guess the problem here was that I was completely in the dark in terms of what the hell I am doing with CPAP.

Meanwhile while I figure this thing out with BIPAP, I am still interested in jaw surgery as I think I could benefit from that. Dentists here in NL had already opined in the past it's a good idea for me.

I was wondering if anybody had any recommendation for a jaw surgeon to speak with here in NL?

I think an ASV device could help you more. And than a ResMed Aircurve CS10 PaceWave. So easy to breath with.

I think an ASV device could help you more. And than a ResMed Aircurve CS10 PaceWave. So easy to breath with.

EstrellaJJ schreef: 15 dec 2023, 15:52 There's questions now on the PS because at 13/9 I will get centrals

This is the reason why ASV could be useful. @RuudJ, ASV is BiPAP so if you're on BiPAP then ASV doesn't necessarily make it comparatively easier to breathe. In fact, the PS modulation makes ASV slightly harder to fall asleep with compared to plain BiPAP. It took me a while to learn how to breathe without causing waves in the PS delivery while falling asleep.

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 variable PS for REM without timed breaths etc.

So probably IPAP will come out at like 11-13, maybe even higher, and I have still that mouth leak problem to solve.

By the way as you guys can see this PAP thing is quite difficult for me, there's problems over problems etc. While I do think I will be able to use it for some relief and to gain some time, I am not sure this is long-term treatment for me.

So I am really thinking about surgeries like MMA. There's a dentist here in AMS that is more than happy to send me to one (she notes overbite and small palate= but the problem here is that of course sleep disordered breathing is undiagnosed so I have to check very thoroughly what the surgeon would do (would they even believe me when I say i have SDB? If not that could mess up the whole operation as they could just not advance a lot). In general it seems to me a good idea also for teeth health. Just a good thing to do given a bit recessed profile. Risk increases with age so if I am ever going to do this, this is a bit the time I think at 29

So I think I need help on these questions:
- where can I go in NL that will diagnose UARS? I recall reading Kempenhaeghe can do that?
- How are surgeries in NL? Ideally I want to do this here and get it covered. To be honest it seems to me here the health system is not bad, maybe just a bit stingy in actually doing things but my impression is that there would be high standards for surgeries. I mean foreign health providers were not doing any better in diagnosing UARS
- Any names for jaw surgeries that are more famous than others? Most countries have some bigger names than others

EstrellaJJ schreef: 16 dec 2023, 11:19 Although I am a bit uncertain because at 3.5 I think I don't see central problems anymore

The point of ASV is to apply low PS when needed to avoid CAs and high PS when you need the extra push to resolve FL. This is the penny that needs to drop for most people: for people with CSA we use ASV to streamroll over their CAs. For flow limitation we use ASV to treat FL but at the same time avoiding provoking CAs in the first place.

Yeah I get the idea. For now I think I need confirmatinon that the current pressures at least work for the most part I think

So does kempenhaeghe score with 1a rule? And they diagnose UARS, correct? I really need that diagnosis otherwise surgeons will laugh in my face

Kempenhaeghe is the best we have I think, but there are no guarantees especially since dr. Lisette Venekamp left.

Hmmm Lisette Venekamp ok interesting. I think I see she is at NSI now. I might be able to ask for a referral to her specifically or to speak with her and no one else at NSI. I will try.

This is what I did and it worked out. However, with me her main priority wasn't a diagnosis UARS (althought I mentioned from the beginning that I suspect I have UARS). She advised a trail period with Cpap and wants to see if it works. However, since you've had previous treatment already she might choose a different approach in your case.

I noticed you mentioned mouthleak with tape. For me the type of tape I'm using makes a big difference. Normal tape didn't work, now I'm using Fixomull strectch and it makes a huge difference.

Hi! After being brushed off by my local hospital I actually, based on knowledge on this forum, also wanted to go to Dr Lisette Venekamp. So what I did, I reached out to her on LinkedIn, activating a Premium trial for this , she responded to me, which in turn allowed me to be referred to the NSI specifically to her for my second opinion.

Coming Thursday I have my first appointment with her.

I think you can also just ask directly at the NSI to have your appointment.

Ok thank you. Will keep experimenting with tapes. From a doctor I really would like a diagnosis seems like she's my best shot at being properly evaluated and diagnosed

Diverse quotes (en hier en daar ook wat meer) weggehaald. Leest u svp dit bericht over het citeren: viewtopic.php?t=14536

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 basically suppose I use pressure fixed at 6. It will be full of RERAs. So okay we can see the problem.

If I increase the PS from that point, I will reach a point at which centrals will emerge from around PS of 4 or so. The RERAs will not be solved at that point.

So let’s suppose I increase pressure. Just EPAP. With PS ant the point just before it starts causing centrals. Eventually I will reach a point where the pressure is too high. Maybe not for the entire night but I get clear signs that at certain parts of the night it’s too much.

Variable pressure support from the ASV doesn’t work. The PSmax is supposed to solve flow limits without causing centrals but for me I guarantee you it causes centrals.

I am thinking of trying out in more detail an EERS thing. To raise PS beyond what I currently can.

Like I don’t see any other way. Any thoughts?