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[Treatment] Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
#21
RE: Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
You are not really increasing the pressure with Pmax, more just setting the upper limit to what the pressure can climb too. If it's too wide-open then the pressure can range (sometimes wildly!) between the lower and upper limits, causing arousals. I'm not sure if there are rules regarding when you get to the top of the range you've set. I'm no expert on this, but I usually make a point of avoiding it, by giving myself a small amount of headroom above what I consider to be MY 'sensible and comfortable' Pmax. Intuitively it feels like you wouldn't be catching full breaths. Others might want to chime-in with what happens if you continually hit your Pmax.

I've experienced a similar situation to the last graph you posted on a few occasions too, where the pressure just shot up - almost out of control. Turning the machine off and on again, seemed to allow it to settle down again (much as your graph shows). I suspect with your wide open pressure range 4 - 20, the machine was 'seeking' a workable pressure ...and just overshot. Had you had a Pmin closer to a workable value (say 9) and a tighter Pmin / Pmax range, then you might not have had such an erratic time - but Pmin=4 seemed way off the mark. But that's just speculation on my part.

As regards how SoftPAP works, I guess that Lowenstein expect that clinicians and labs supplying or setting-up the machines to have at least a modicum of training and understanding of how they work and how to titrate them - they certainly don't expect the patients to be having to do-it-themselves! Hence the lack of documentation ...and as experts, they do have to maintain an air of mystique about all this after all!

The information on SoftPAP has largely been ferreted out and pulled together by AB Member Macka, based on the little information that has escaped from various Lowenstein clinical presentations and publications, together with the personal testing he has carried out on the various machines.

When you do make pressure changes, please run with them for a couple of nights, as it takes the body a few days to adjust and settle into them. Same goes for soft cervical collar - it can take a bit of getting used to and not over-tightening it

I would maybe switch off the FL markers on the Flow Rate graph too - they simply duplicate the those in the Event Flag chart and prevent us seeing what else might be happening to your flow rate.

One of the downsides to treating SDB, is that it seems to involve very expensive speculative purchases. Most of us will have cupboards full of the 'next best thing' in masks, pillows or paraphernalia, that will cure all our ills! Usually the most expensive item being our first PAP machine, a necessary investment, even if it's just to get the data we need to inform us of what machine we really should have bought!
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#22
RE: Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
Thank you so much for the thorough info WisNaeMe!

An update - things are a bit better.

I've tried cpap straight 12 pressure all night to give EPR 3, but have now settled on min 9 max 10.5 even though as you say that only gives an EPR 2.5 (thanks Macka!). Any more and i wake up with chipmunk cheeks. I can see the machine is maxxing my range a lot but i can't really up the pressure.

I still have severe flow limitations and lots of reras, but also can't really link "how god i feel" to any metric besides one; and that is if i can sleep more or less straight for 8-10 hours, so i still need a lot of sleep it seems but that may be my body catching up from years of no treatment? I hope i will be able to feel great on 7~ hours at some point.

On a bad night i wake up after 2-5 hours, then can't sleep for 2 hours then sleep another 3 hours because of an activated nervous system, though maybe i am seeing a gradual betterment of this segmented sleep issue just by using the machine every day for a month now. 

I've attached 3 screenshots of this night night with lots of rera+fl mess, but some periods that actually seem a bit better and more stable + rounded. The weird thing is that tonight i feel like i slept "great" - a relative 8 in OSCAR (relative to the horrors before cpap), so it's difficult to gauge if there's a lot of room for improvement or i'm at max treatment at the moment as i have so much flow limitation + reras and still feel some brainfog + fatigue but it's so much better than no treatment.

There also seems to be different schools about this as LankyLefty says "meh" to FL's on YT, while CPAPFriend takes it very seriously like SleepRider her on this forum.

This whole 1 month cpap endeavour has already "blackpilled" me somewhat on the whole medical field, i'm pretty sure it's only because of you guys i now sleep "ok" every night, but up from absolute dystopian horror before cpap so still amazing and promising. 

The fact my doctor started me on min 4 max 20, that's insane to me; 4 makes everyone feel like they are suffocating right? And 20 will wake everyone up so yeah, very weird starting setting. 7-13 would make sense.

Anyway to conclude it seems like i've reached my optimal settings for now at least with a tight range around 10, i feel amazing compared to before this machine, but i still have bad days and lots of reras + flow limitation even with collar, small pillow, laying in different positions etc. so i simply don't know if theres lots of room for improvement with another machine as my relative is so good compared to "no rem sleep" before cpap, yet still requiring 9+ hours to feel great which is quite debilitating + some severe fatigue later in the day.


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#23
RE: Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
Other things to try might be -
  • Use a full-face or hybrid mask, as it might help you manage the leaks a bit better.  
  • Changing to a 19mm hose (I’m assuming you are probably using a 15mm one).  This usually reduces the velocity of the air (softens it) and can make breathing a bit more comfortable. (Remember to change the machine’s settings to 19mm too if you do this).
  • Add a VCOM to the circuit (see discussions elsewhere on ApneaBoard for more information on the VCOM device).  Again it’s supposed to make breathing more comfortable and claims to reduce IPAP without impacting EPAP, which all sounds a bit counterintuitive, but it seems to work for some people. Some claim it helps with chipmunk cheeks!  Might be difficult (or prohibitively expensive!) to get one in Denmark though.
  • Switch on Dynamic mode to see if it helps with the FL’s.  The air delivery didn’t feel any different when I turned it on - it wasn’t as dramatic a change in sensation as the name implies, but it did clean up my chart a fair bit.
I’m not sure that any of the above will significantly reduce your FL’s and RERAs, and each comes with fairly high price tags for such speculative purchases, so go carefully.

It might just be that you have reached the limits of what you can achieve with a PrismaSMART and need to look at moving to a bi-level machine or a machine capable of delivering EPR / PS of at least 3 cmH2O.  

At least now you have some hard evidence to share with your doctor - both your OSCAR charts showing consistently high FLs / RERAs and you continuing to experience daytime fatigue and tiredness …and now all accompanied by aerophagia.  It should maybe allow you to lobby your doctor to be put on bi-level, or at least a machine that will better manage the FL’s and RERAs. I wouldn’t settle for simply being for being slightly better than how you were prior to CPAP, there is scope for a much better quality to your sleep (and life) with the right treatment.

My experience of moving to bi-level was that it was far more comfortable than APAP.  I didn’t experience anywhere near the same levels of aerophagia (even at higher pressures) and it quickly brought things under control and the quality of my sleep and daytime improved dramatically.
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#24
RE: Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
Try and turn of the softpap. I had terrible sleep, reras and flow limitation with the Löwenstein softpap. It is not working like Resmed EPR. I wuold try and set min at 7, softpap off, and see what happens. I had the machine myself for 1 year and tried a lot. Dynamic makes it react a bit quicker to flow limitation but the downside more pressure change and maybe awakenings.
If you did not try and turn the softpap off, please do it and compare.
I think an Airsense 10/11 or Aircurve 10/11 vAuto would be better for you. I have them both, including the Prisma Max and Prisma 25S. The Aircurve 10 vAuto is the best for me, and I tried all kind of settings on all 4 machines.
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#25
RE: Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
Thanks both, looks like i might need bi-level then. 

I'll definitely try to experiment a bit before upgrading as my country only pays for treatment if AHI is over 20, and mine was 14 when i had my home test.

But having a potential upgrade sounds great as i already feel better than no treatment, already found a store that sells bi-level for around $/€ 2000 which is quite expensive but oh well.

Will experiment further and get back if there's anything that works, and will be checking if other people have similar issues with Lowenstein or Flow Limitations in general.
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#26
RE: Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
I’m in the same boat.
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#27
RE: Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
I think you are on the right lines with continuing to experiment with settings for a bit longer …and only then looking at moving to bi-level. But your FL numbers do look very high and don’t seem to be responding to the changes you’ve made so far. I cut my losses with Lowenstein at much lower numbers than yours and have had no regrets …so far!

While the Resmed AirSense 10 or Lowenstein 20A (both APAP machines) might both be sufficient in meeting your needs; topping out at 3 cmH2O EPR and 4 cmH2O respectively, bi-level machines such as the ResMed AirCurve 10 or Lowenstein’s 25ST can provide a bit more flexibility and headroom - offering higher levels of pressure support (PS) and PMax, should needs require. You don’t want to be in a position of under-speccing any future machine and having to then go through this whole process again!

If you do decide to continue with a Lowenstein (or ResMed for that matter), then it’s worth checking whether suppliers are prepared to loan you a machine for a trial period prior to purchase, especially given the cost involved.

It might also be worth looking at importing a bi-level from the US (local import restrictions allowing). I imported a ResMed AirCurve 10 Vauto from US to UK. For comparison - including shipping, it cost £812 (945€) and was a quick and painless experience …and no prescription required. I think prices have a gone up a bit since then, but probably still more competitive than buying locally. If you need further info, then let me know. I’m just putting this out there as a further consideration.

Fingers burned, I choose ResMed over Lowenstein because of the wider support that is available both here and elsewhere. Lowenstein’s has a much smaller user base and a more restricted supplier network here …and none in the US. Being able to draw direct comparisons with other ResMed users’ experiences and their data, is important to me, particularly if self-managing your situation. For me, there is just not enough information or support out there to safely choose the Lowenstein option.
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#28
RE: Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
I am just along for the educational opportunities.


Eat-popcorn
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#29
RE: Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
Hi, just read through your thread. IMO, unfortunately the Prisma Smart and Max lines are only useful for very atypical OSA without any UARS componant at all. Resmed autoset 10 and 11 are a little better as the pressure support is a little more aggressive because of the fast ramp.

Next level is the Prisma20A, which does offer pressure support 4 once pressure is up, but it is a hybrid tri-level mode and therefore not like true bilevel. Once you recognize flow limits are at a certain intensity then bi-level is your only solution. Yours are at this level. This is backed up by the low tidal volume and your comments on the restrictive history. You will likely need to work on a few areas as well as source the ideal machine.

All you can do right now, is anything to increase flow. Dynamic mode, 22mm hose with 15mmm set at the machine and you can even try the bacteria filter setting. If nasal restriction is a big part of things then pillows can help in some instances.

The Resmed vauto can do the job and the Lowenstein 25ST. The 25ST I like a lot. Very comfortable. Better algorithm IMO, largely because of EEPAP and also the adjustable ramp IN. If you are cunning you can get these machine pretty cheap. I found a 25ST on German ebay for 999 euro also an as new 30ST from Turkey for 500US. Have Resmed vAuto and ASV which started life as basic models purchased during big sale days in the US.

Take another sleep test. You should know how to get your score over 20 by now.
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#30
RE: Lowenstein Prisma OSCAR data: FL, RERA galore + extremely tired?
Hi Macka,

Thank you so much for taking a look and for recommendations on the few things i can try for now - especially the pointer on the nasal pillows, which is worth a shot before going bilevel, - could be that my nose is simply restricted - and it makes sense has i've always naturally been a mouth breather at night, am currently on steroid nasal spray and have always felt like my nasal airways were too small. Mouth breathing before cpap was worse though so i intuitively opted for the nasal mask - that's why i also think i have UARS, my airways in general are just smaller from birth i suspect.

I'll definitely consider the machines you and others recommend - especially the bilevel Lowenstein, and if i can find it for around 1000 euro on ebay or similar, sounds great!

Regarding another sleep test - i'm considering this, but the fact the doctors i have currently seem more or less clueless (started me on 4-20 pressure, do not know what UARS is etc). and the fact that 15 + AHI will have implications for my driving license - im wondering if it's not just easier to go solo. Also the fact they didn't immediately tell me "you really have to self titrate and experiment a bit yourself through the clinicians menu to find a comfortable pressure" - instead of pointless emails back and fourth with weird settings from their side makes me think the only reason to get a machine from the public hospital here in Scandinavia is if you really don't have the money.

I'll try Dynamic Mode, bigger hose, nasal pillows, (and no softpap as another user said just to check) and report back.
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