Hallo allemaal, dit bericht is vertaald uit het Engels

Ik heb al jaren vermoeidheidsklachten. Nachtelijk bruxisme. Moe. De gebruikelijke lijst.

Aanvankelijk sterk vermoed slaapapneu. Ging naar NSI. Ze zeiden "nee, het gaat goed. Hé, misschien ben je gestrest omdat het moeilijk moet zijn om een expat te zijn?" - absolute onzin natuurlijk.

Dus wat ik deed, is dat ik een CPAP uit eigen zak bestelde. Ik heb het geprobeerd. Het werkte niet.

Toen ontdekte ik wat UARS is. Ik realiseerde me dat dit eigenlijk zou kunnen zijn wat ik heb, sinds lage AHI maar hoge RDI en alle gebruikelijke symptomen.

Maar toen ik met de slaapspecialist in Nederland sprak, realiseerde ik me dat niemand hier iets weet over UARS. Ik sprak met een slaapspecialist die zei "hé, het gaat goed". En ik had zoiets van "hé, is het mogelijk dat ik moeite heb gehad met ademhalen maar zonder apneu's? Weet je, UARS?" en ze had zoiets van "nee, je zuurstofgehalte was gemiddeld 93%. Daarom adem je prima" - wat ik natuurlijk geen erg verhelderende uitspraak vind.

Dus wat ik nu heb, is dat ik in plaats daarvan een afspraak heb geboekt voor LONDEN, ENGELAND, maar jezus christus, dit is onzin. Ik heb een MAD-apparaat op maat gemaakt en ik kijk er naar uit om het te proberen.

Ik ben echter ook voorgesteld door een orthodontist in Nederland om een dubbele kaakoperatie te doen. Dit komt omdat ik een skeletale klasse 2 malocclusie heb. Ik dacht dat dit klinkt als een geweldig idee, het zou ook UARS oplossen. Maar ik wil het om beide redenen doen, niet alleen om cosmetica. Ik heb echter de hoop verloren om een arts UARS te laten begrijpen, en ik heb er geen vertrouwen in een chirurg te laten opereren zonder de ademhalingsproblemen te kennen die ik ook hoop op te lossen.

Aan de andere kant is het niet zo dat iemand in ieder geval in elk land een dubbele kaakoperatie voor UARS zou doen, het wordt als te mild beschouwd. Dus ik zou het officieel om "cosmetische redenen" kunnen doen en dan hopen UARS op te lossen?

Wat zal ik doen??? Wat denk je?

EstrellaJJ schreef: 13 aug 2023, 22:10 Aanvankelijk sterk vermoed slaapapneu. Ging naar NSI. Ze zeiden "nee, het gaat goed. Hé, misschien ben je gestrest omdat het moeilijk moet zijn om een expat te zijn?" - absolute onzin natuurlijk.

Holy medical gaslighting, batman!

EstrellaJJ schreef: Maar toen ik met de slaapspecialist in Nederland sprak, realiseerde ik me dat niemand hier iets weet over UARS.

Unfortunately there are only a couple of medical practitioners here that I know of who understand UARS.

EstrellaJJ schreef: "nee, je zuurstofgehalte was gemiddeld 93%. Daarom adem je prima"

Incompetence beyond belief.

Before you rush into surgery I'd recommend you try to resolve your breathing disturbances with a suitable xPAP device, configured with the right settings. You say CPAP didn't work, in what way did it not work? What settings did you try? Did you analyze your breathing with OSCAR?

The UARS gaslighting in this country is very real T_T

So for the CPAP, I did try to optimize that via OSCAR (also consulting apneaboard.com) but it just felt awful. Like I just wake up better without it. The OSCAR number looked fine, no problems according to CPAP. To pursue that further I am afraid something like an ASV would be required (all out of pocket of course)

This is why I am trying next the MAD instead. I have good hopes (I am waiting to receive it)

The surgery still looks attractive to me because after all I do have constant orthodontic problems which required like 5x braces over the course of my 29 years of life. So I understand the orthodontist when she says "cannot guarantee stability without the surgery due to the skeletal problem". So after all it could be a nice idea, I get a nicer jaw and hopefully my UARS goes away too ideally?

I am interested in trying the more advanced Resmed s10 AirCurve ASV though. Out of pocket this would be EUR 3.000 though.

Do you think this would solve my symptoms?

Hey actually general question, let me put it differently.

So given UARS and that I am on my own for treatment, what’s the best way? Since you have been through this before

EstrellaJJ schreef: 13 aug 2023, 22:29 (also consulting apneaboard.com)

I've heard from people who went there and came back with the weirdest ideas. Not sure what's going on there, but they aren't thinking clearly about what UARS really is.

EstrellaJJ schreef: The OSCAR number looked fine, no problems according to CPAP

What do you mean by OSCAR number?

What I would do is I would post screenshots of the daily overview of OSCAR. Like AHI, flow limitations etcetera.

However now I realise maybe this is not good enough. Like with UARS perhaps you have to zoom in on the flow rate chart. Perhaps that wasn’t sufficient. In any case it really seems like the basic APAP was not enough, even when I wore it successfully I experienced no improvements at all.

You could do that nowadays with SleepHQ. It likes the same as OSCAR. But you could create a Link which you can place here in your message. We can than watch your graphics and we can zoom into your Graphics too. It's free to use. In the beginning your could use it free for one or two weeks and after that you can use it for free only for the last 30 days. It's an Australian program. https://home.sleephq.com/

Thank you for the suggestion. Here is a few links to some nights I tried wearing CPAP with good compliance. Zero improvements were felt during those days

https://sleephq.com/public/8a92b82d-6a5 ... b77a72bae8

https://sleephq.com/public/ac10fcf6-e0f ... fbed36e03e

https://sleephq.com/public/ac10fcf6-e0f ... fbed36e03e

You are showing data from February do you have also from the last few days? Or do you you have no cpap now?

Also you use a pressure from 7 till 10 and you had only a few central apnea, no obstructive or hypopnea. Did you try to sleep with a lower maximum pressure example 9 or 8 cmH20?

I still have it, I just don't use it anymore (experience no difference even with 0.x AHI)

I used it for a month in February-March. This was done I would say at low pressures, even 6 at times - still no difference.

There is more recent data from May. A second attempt. Tried at higher pressures. 8, 9, 10, 11. Did not help. Overall from 6 to 11 nothing useful came out of it. This is also why I really don't think the symptoms are from apnea but from UARS. I have experienced good sleep before by luck in positioning (I tried to arrange pillows sometimes and it helped for like two nights) and this is why I know the improvement should be strong and immediate, it's not really something from waiting

One indication that I can give from trying higher pressure is that the APAP will go higher if the limit is set higher. Like for example if I put "start at 10 and limit 14", then it will start at 10 and you will still see increasing the pressure during night to for example 11, 12. But if you start at 6 it will increase to 7, 8. Even though no really much apneas in any case. Possible indication that there are events the APAP is just not able to deal with and gets confused?

EstrellaJJ schreef: it really seems like the basic APAP was not enough

Right, basic APAP is rarely adequate.

EstrellaJJ schreef: Possible indication that there are events the APAP is just not able to deal with and gets confused?

It doesn't get confused. ResMed APAP algorithm is unique in the way it also reacts to flow limitation, not just apneas and hypopneas. The flow limitation detection (including the FL graph in SleepHQ/OSCAR) is very weak though, so there's a lot that slips by. And then there is the consideration that static pressure (APAP provides static pressure, on a slow trend) might not be adequate by itself to resolve all FL in all people.

Personally, I don't use Auto EPAP (the equivalent algorithm in bilevel machines), I keep fixed EPAP at a level where increasing it doesn't yield any benefit, and then increase PS (pressure support) to try and resolve the FLs. I my case I need a wide range of pressure support (5 to 10 cmH2O pretty much works) with ASV.

So in summary how do you treat UARS with CPAP? Confused about the approach

So I understand a BiPAP is required at a minimum, but preferably an ASV? And settings I guess it varies from person to person?

If CPAP resolves all flow limitation, then CPAP is fine. I do think that is rare though.

If plain BiPAP-S resolves all flow limitation, then that is fine.

If not, then ASV with BPM disabled (quasi "ASV-S") can resolve all flow limitation. I am such a case.

It's matter of escalation.

Alright then I am looking forward to try more advanced devices and see if it helps with the symptoms! God I just want to feel good sleep again

Surprise suprise...I am back...with a DSX900!

Can you guys help me figure out this ultimate UARS machine set-up?

I have been spending a lot of time reading. I understand I have to use PS and EPAP to solve my symptoms and to give room to the ASV to move up.

I started out with minEPAP at 6, minPS at 3.5 and then gave room for ASV to intervene with maxEPAP at 9 and maxPS at 10.

To be honest first night like this was pretty bad. I am attaching OSCAR screenshot. https://imgur.com/jCxerUb

I am thinking of switching to BIPAP mode for now (so minPS and minEPAP = max) and worry about the ASV part later. That's what I am going to do for now

Your photo is very unsharp. Please make a screen shot with your pc.

RuudJ schreef: 08 sep 2023, 08:03 Your photo is very unsharp. Please make a screen shot with your pc.

Hi, thanks for reply - this is a PC screenshot, looks sharp to me, are you sure there is nothing you can do from your side to view it better? Otherwise what else can I use to upload this?

Hi, sorry your are right. I saw it from a mobile phone and on the desktop it shows perfect

Try to sleep without Bi-flex and watch what the results will be of this.

Ok thank you. Think that right now it's set at 1. What does Biflex do anyway?