F30i has very little dead space, so that should be good.

iBoulanger schreef: 03 okt 2023, 16:27 you can create a diy diffuser with the intake filter of a resmed machine or something similar. Just make sure you don’t block it too much, I check by feeling the air temp. It rises when exhaling and just before inhalation it is already cool again, so I figure it should be OK.

Ok, the resmed intake filter seems to be busted.
Last night it got saturated with condensation, had issues with CO2, heated mask and also too much moisture in general.
Also the black dots are appearing, just like the filter of the p30i.

After removing the filter, the temperature inside the mask dropped and everything was ok again.
Except for the irritating sound of the ventilation that is.

Interestingly, my jaw was dropping with the filter still on (lack of oxygen I guess). The jaw dropping was causing massive leaks with the mask. It kinda stopped doing that after removing the filter.

So I recommend using some different type of filter.
I'm trying a small piece of G3 filter now. Iirc PLP is using the filters suited for extraction hoods. Which given their intended use should be able to handle condensation just fine I guess.

EstrellaJJ schreef: But let me try again with this F30i thing I got.

Hope that works for you.
I can relate to the mouth lekkage struggles.
But I guess that Ruud with double tape and double strap also needed to throw everything at it... so it can be a bxtch.

EstrellaJJ schreef: For the EPAP 10, to be honest I think sometimes I speak too early. Pardon me, my mind can be a bit all over the place, it's full crisis mode to be honest. Improvements were not really sustained at all, maybe they were all in my head and then got also aerophagia - the painful kind.

I will try EPAP 6 and PS 4 tonight. Theoretically that should be something at least remotely helpful assuming no leaks

It sounded that up to 10 you were fine.
For me the aerophagia has backed off to acceptable levels.
I do take some extra supplements that might have helped this process (magnesium, vit d, calcium, vit k1), but your mileage may vary.
Somehow I now also tolerate higher epap better than before.

Hope your step up helps

iBoulanger schreef: 04 okt 2023, 11:54 Which given their intended use should be able to handle condensation

I also keep a distance of about 1 mm between the mask vent and the filter. That way the airflow can never be impeded.

persluchtpiraat schreef: 04 okt 2023, 14:39 I also keep a distance of about 1 mm between the mask vent and the filter. That way the airflow can never be impeded.

Ah check, that will work indeed.
Any special trick on how to create this 1mm gap?

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 6am, and then finally at 7am. Just way too much and way too early. Clearly quite some events are not addressed yet. This is quite clearly happening in REM sleep.

Daily overview: https://imgur.com/Rd3UsAH

It is not clear to me what to do now. Raise EPAP or PSmin? Or PSmax?

i am thinking that PSmin of 5 would result in CAs. Maybe even at 4.5 already. So either PSmax or EPAP. Not sure. I suppose EPAP? Since I understand I should be able to solve most events with PS constant and EPAP only

Nice! That sounds promising!

Obviously I’d definitely go for increasing the Epap.
And I’d adjust the PS min and max accordingly, until the Epap increments reach their limit. Afterwards try to finetune (using happy fun time asv, look for max width, swings) your ps.

My guess would be that as added bonus, you’ll be able to eliminate some CA, since you’re effectively reducing the difference between Epap and ipap. (Assuming they are induced by the pressure support)

your effective pressures regarding ipap will remain the same, so as long as you’re able to tolerate the increased Epap, you should not see any increase in issues i.e. centrals, (hypo)apneas or perceived shortness of air etc.

In my experience you should try small steps and if they give any issues, give them 2 or 3 days to resolve by themselves before proceeding or reverting.

But this from the guy who’s still struggling as well, so just my $0.02

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 should really just be a fine tuning thing, so not really the breakthrough I am looking for right now

EstrellaJJ schreef: 04 okt 2023, 19:50 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 should really just be a fine tuning thing, so not really the breakthrough I am looking for right now

Well especially if you did not have ca’s before and they can be introduced by the difference in Epap and ipap, it would be a good thing to try and lower it.

Now you have Epap 6, psmin 4, psmax 5 right?
So that’s Epap 6 with ipap between 10 and 11.

If you increase Epap by 0.5 ie Epap 6.5 and reduce the ps by 0.5 then you’ll get:
Epap 6.5, ipap between 10 and 11.

So all you do is increasing Epap, without fiddling with the ipap. This should give you a much better understanding of how Epap increase is helping you (or not), without suffering from an actual lower ipap. You’re basically not lowering anything, just increasing Epap and reducing the difference between Epap and ipap. Which is good, if you’re suffering from ca’s you did not have before.

If you leave the psmin psmax as is, you are in fact increasing the ipap as well, making it harder to tell what the Epap is doing for you.

IMHO you are currently suffering from self induced issues by having such a low Epap and then already starting with a fairly high PS. No offence.
I’ve been there, like 2 nights ago. Reduced the difference between Epap and ipap, BOOM! Ca’s were gone.
But I get that you are afraid of making things even worse, but please look at the effective Epap and ipap values in the calculations above, you’re safe.

As long as you can tolerate the Epap, you should be able to repeat this process, without ever lowering your effective Ipap at least until you reach Epap 10. That would be amazing, since you are creating new options for actually increasing your ipap at that point. Without having immediate issues with ca’s. That’s a double win in my book

Hey thanks for the elaborate reply. The thing is that the sleep test was a 2.4 AHI with all hypopneas (zero apneas) under 3% rule. All the AHI coming from REM. This seems a lot to me like towards "pure UARS".

This was the test https://imgur.com/a/qQ299KS

So this is why I am a bit skeptical of EPAP. I understand it is mainly for obstructive events, while PS is really what tackles UARS.

For the centrals, so far to be honest not really a problem at least not at PS of 4. It does get a problem at like 5 and above. Maybe 4.5, that seems a bit borderline as well. But 4 seems fine. Yes there's a few centrals here in the OSCAR report but it is questionable how real they are (all seems connected to arousals preceding them immediately. There is maybe a couple there that are real but I think not an issue at this stage...I think maybe also good to build some small tolerance to it (assuming it is treatment emergent, so some light exposure helps in bringing that away in the future?)

I would say this is the Bipap protocol phase "raise EPAP until you start feeling better"..

Anyways current settings seem fine except for REM. not fine for REM. so I guess titration should be for the worst case scenario, so REM so raise EPAP I guess

EstrellaJJ schreef: 04 okt 2023, 20:49 So this is why I am a bit skeptical of EPAP. I understand it is mainly for obstructive events, while PS is really what tackles UARS.

No, this distinction doesn't exist. EPAP serves to stabilize the airway. You need to get as much out of it as you can get. Using PS on an unstable airway will give "volatile" results.

iBoulanger schreef: 04 okt 2023, 20:31 If you leave the psmin psmax as is, you are in fact increasing the ipap as well

Do not talk about IPAP as if it's an independent variable. It is not. EPAP and PS are the "knobs" and whatever IPAP follows from that is pretty much inconsequential.

iBoulanger schreef: 04 okt 2023, 20:31 If you leave the psmin psmax as is, you are in fact increasing the ipap as well, making it harder to tell what the Epap is doing for you.

This only serves to confuse.

Thanks! What is your opinion on my REM awakenings / disturbancesand my latest daily chart?

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-allergic rhinitis and allergic rhinitis.

Indeed I have a rhinitis!

This could also explain why in the last few days of PAP, i had raging headaches issues. could have been a sinus headache. I just assumed it was a sleep deprivation headache at first but turns out I was probably wrong.

Anyway, there are several possible culprits. First of all, sleep disordered breathing in itself is a source of inflammation in the nose. But there could also be allergies like house dust mites. And most importantly, I have realised that the minoxidil 5% I take for hair loss directly inflames my nose. It is a vasodilator. I did not realise that before.

So overall with the help of the book it has also become clear that the rhinitis is bad enough that needs separate treatment, and CPAP air can add inflammation (hence perhaps the raging headaches on PAP).

So in that sense it is possible that the right pressure combination was already found but didn't work because it developed sinus headaches.

I am now using allergy medications for the nose and discontinued minoxidil and a few days ago, for the very first time in god knows how long, I woke up with a clear nose.

I feel better. Although nowhere near cured, I no longer have headaches and have enough energy to pretend all is normal. I am still tired to be clear but a bit less.

Current plan is to see strong improvements in nose inflammation and then return to PAP a few weeks down the line. In the meantime trying MAD. I continue to have little to no discomfort with MAD so far, the problem is more like it hasn't helped so far.

thanks for the update! and thanks for the book tip! Ordered one as well.

let's hope a clear nose unlocks a new step towards an healthier state.

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 because the nose has less resistance to it, who knows.

Anyways, my current settings last night were EPAP of 9.5-10-5 and PS of 3.5-6.

Think I will try EPAP of 10 and PS of 3-6 tonight. I am in the mindset of increasing EPAP until I feel better.

No improvements so far to be honest. Let's see what happens tonight

I also have a call with Barry Krakow this Sunday. Let me know if any questions I should bring up?

Additionally, I am going to the most elite sleep center in Italy in early December. Hoping to get someone to actually follow me with a plan, perhaps titrate in a lab etcetera. Will be speaking with the head of the department, some guy that has trained in Stanford and I think he might know Barry Krakow personally.

EstrellaJJ schreef: 03 nov 2023, 10:40 I am now seeing I have central apneas problem at min.PS of 3.5. Interesting. Wondering if that's because the nose has less resistance to it, who knows.

That makes logical sense, yes!

EstrellaJJ schreef: 03 nov 2023, 10:40 I also have a call with Barry Krakow this Sunday. Let me know if any questions I should bring up?

Wow, how did you manage that

EstrellaJJ schreef: 03 nov 2023, 10:40 Additionally, I am going to the most elite sleep center in Italy in early December. Hoping to get someone to actually follow me with a plan, perhaps titrate in a lab etcetera. Will be speaking with the head of the department, some guy that has trained in Stanford and I think he might know Barry Krakow personally.

Italy sounds cool. I've read that CAP (cyclic alternating pattern) analysis is done in some places there. Is this one of those places?

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, authored by him. So seems like whatever that is, it is definitely practice there.

I have very high hopes in San Raffaele, in Italy it is known to be the VIP-hospital (any VIP that has any health problem always goes there). It is full private medicine so none of the bullshit I have experienced here in NL where I have to go to these GPs (with a specialisation in nothing) and rely on them for referrals to random places to speak with random people I haven't vetted myself. So seems more productive.

Sounds very promising! Good luck, and keep us posted!

Yo guys meanwhile I am still trying PAP...

I cannot understand for the life of me why PAP isn't working for me, like WTF...

I have uploaded data to wetransfer in case anyone wants to take a shot at deciphering this...

https://we.tl/t-Gumqice5YC

It looks like a disaster to me...

Any particular days and time intervals?

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:




What I see is that in between 3.05AM and 3.10AM my flow rate is degrading, leading to a full awakening. We can see from the mask pressure that nothing is happening in terms of auto-adjusting algorithm (or not happening fast enough). So the problem is not prevented. Also that shape is WEIRD.

If we look at the second image in the screenshot, which is from a few minutes prior so 3.02 AM, we see that something was starting to happen to the flow rate however this was solved immediately / the machine reacted immediately. This is via auto-PS.

This suggests to me that the answer for this is to increase min.PS. Notice in the data how the PS is increasing slowly during that time to the max of PS 4, just not quickly enough though.

Perhaps I have been wrong about min.PS being too high at 3.5 and perhaps I need to increase to 4.

Any thoughts on this awakening and what this might suggest for my settings?

The days after this I had tried to increase EPAP, but also decreasing PS - no benefits, actually lost benefits

modedit RM: attached screenshots to message. You can drag screenshots into the editor instead of using external sites.