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[Treatment] Struggling to treat UARS with BIPAP
#11
RE: Struggling to treat UARS with BIPAP
Almost all of your events are clustered at the beginning and end so the AHI number seems quite distorted. I wonder what is going on there. Even if it is just sleep/wake junk, it might be affecting your sleep. Do you have anxiety when you are awake and wearing the machine? Are you breathing evenly and smoothly?

Some people do find benefit from S mode over Auto. It looked like your EPAP should be 5.5, not 8, if I'm reading that right. Don't look at the 99%, start with the 95%. You might even be able to nudge down over time.

Given the erratic nature of the beginning of your graph, this might be a situation that benefits from ramp, but a ramp that starts at effective therapy pressure, and the min is EPAP 4, (I don't think PS ramps, does it?) Maybe start there if it's comfortable, maybe for 15 minutes to start (the length of that section with lots of variability.)

Just thoughts, without knowing all the history so take them with a grain of salt.

Lisa
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#12
RE: Struggling to treat UARS with BIPAP
Hey ewriter,

Thanks for the advice though I'm a little confused.

Correct me if I'm wrong, but the VAuto only auto-titrates EPAP (using the same algorithm as APAP). An ASV machine would be needed
to auto-titrate PS, and from what I've heard only the Philips ASV sets PS to defeat flow limitations, whilst the ResMed one sets PS to maintain a target minute ventilation — unfortunately I don't think we'll be seeing any of the former on sale anymore  Sad
As luck would have it though, my AirSense 10 CPAP has been jailbroken so it can now function as a BIPAP S, BIPAP ST, VAuto, ASV and ASVAuto machine (albeit some important features missing).
The best results I've gotten so far have been on ASV mode (EPAP=7-8, minPS=6, maxPS=13) including one night where I got a massive 45 mins of uninterrupted REM (see attached, felt great that day), unfortunately even with the same settings it's proving
extremely hard to get consistent results. I have also noticed across several nights with ASV that when the pressure goes to 17.5/8, I get periods of perfect looking breathing where my respiratory rate is low (see 2nd and 3rd attachments for example), practically identical to what MRI_Doc describes in this post.


I have tried CPAP in the past, and although it eliminated my OSA at a pressure of 8, it destroyed my sleep and made my daytime symptoms much worse. This was also true when I set EPR=3, although to a lesser extent. The best setting was the lowest with EPR on i.e. 7/4, and it still seemed to damage my sleep.
Later I learnt that this was likely due to 'expiratory pressure intolerance', which a lot of UARS sufferers seem to experience
on CPAP, but which they don't seem to experience on BIPAP (provided PS is high enough).

So that's where I am at the moment — I need pressure support to treat my flow limitations without causing expiratory pressure intolerance (and based on my ASV findings I seem to need PS=9.5), but I'm getting significant central apneas from PS=5. And if I use ASV mode with the minPS setting maxed out to 6, then the central apneas are treated but I get inconsistent results.

Side note: Are your palpitations resolved fully now? If so, what is the propanolol for? And if the palpitations aren't resolved, are you sure it's not being caused by any of the hypnotics you're taking, i.e. zopiclone, dayvigo and clonazepam? I see that palpitations are a side effect of all of them, and you mentioned you rely on them to fall asleep — perhaps your body has built up a physical dependence for them?


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#13
RE: Struggling to treat UARS with BIPAP
(04-18-2024, 07:54 AM)Humancyclone7 Wrote: Ok, I'll raise trigger back up to high.

A few questions:

  1. Since EPAP consistently doesn't go above 8, can I return to BIPAP S mode with EPAP=8 and PS=5, or do I need to stick with VAuto? If so, why?
  2. I get that raising EPAP=less PS=fewer CA events, but could you elaborate on what you meant by 'raising your min EPAP to add more volume to your breaths'? I ask because I seem to do much worse on higher EPAPs, so I'd like to avoid it if possible.
  3. Should I continue sleeping in the inclined bed or switch back to a flat bed?
  4. If the goal right now is to reduce CA events, wouldn't I benefit from a room with elevated CO2?
My bedroom windows are closed whilst sleeping, but I usually air the room for up to an hour before heading to bed. The room is reasonably clean — no mould or other obvious nasties, just slightly dusty. I do have a deviated septum (blocking 30%-50% airflow on one side, septoplasty due October), but otherwise I don't think my nose is the problem; I seem to get no improvement from nasal dilators, nasal steroids, antihistamines and I had turbinate reduction done in August last year, plus the inclined bed should reduce nasal congestion even further. During the day, nasal congestion is rarely a problem for me either (only really happens if I'm infected) even though I spend a good chunk of my day in this room.

I think my flow limitations are arising more from the soft palate, tongue base and possibly epiglottis region (the tongue base looks to be pressing on it).
Here's the DISE I had in August 2023 right before I was given a tonsillectomy, RFA to the turbinates, soft palate, uvula and tongue base.

Thanks for sharing the additional info, it certainly sounds like you have tried a lot of things and obviously you have addressed a number of potentially physical obstructions.

In regards to your questions:

1. By all means you can go back to S mode, but from a personal perspective I like to experiment and observe all permutations of treatment that would be available on the machine I have and would want to see how you get on on Auto mode to see how the machine is responding. This can give you further feedback which can then potentially be applied to S mode, however again it seems like you have done this to some extent already. Nevertheless given that most of your events are CA's I would like to see what results you get in auto mode with high or very high trigger and whether that improves your experience. In S mode how prevalent are CA's?
2. If you feel worse on higher EPAPs then my suggestion is probably not beneficial. I was suggesting it on the basis that the low EPAP and PS may not be providing sufficient support to your breaths thus suggesting to increase preferably PS, but if not possible due to CA's increasing, then increase EPAP. Based on what you have said I would suggest simply focussing on whether you can address CA's with trigger setting and then see if it allows you to increase PS.
3. I cant comment on bed position but from what I understand some people benefit from the incline due to the reduced chance of the tongue going back into the throat. Have you ever tried those tongue retainers?
4. We are designed as humans, and I would assume the same when designing CPAP machines, to function on a natural CO2 ratio within the air. CO2 over 1000ppm causes a 10-15% loss of performance in brain function and how that impacts sleep I dont exactly know, but I have tested and if my PPM is over 1000 in the room my sleep is consistently bad and I wake and frequently cant back to sleep, if its 500-700 I will sleep through. Airing of the room doesnt work unless you have a huge room. I have tested this, I air the room get the CO2 to 500ppm close the window and door to my toom and by 3am im at 1100ppm and 1200 odd by the time I wake up. If have my hall way window open and then leave my bedroom door ajar. My ppm starts at 500 and is about 650 in the morning. You are generating CO2 and further compounding the issue while you are sleeping in a sealed room.

I have a deviated septum which blocks one side. During the day its clear, at night it will be clear but when I wake in the middle of the night its blocked and is generally consistently blocked during the night without the use of my air purifier. Personally I do what I can to optimise the air quality in my room and remove dust and all other particulate matter. It makes a noticeable difference to me. Better air filters improve a cars performance and I believe the same applies in humans.
When I was talking about mould I was not talking about mould you can see or on the walls or surfaces per se but at the microscopic level.

In S-mode do you use Easy Breathe or set a rise time?
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#14
RE: Struggling to treat UARS with BIPAP
Hi Ewriter,

Your story is a typical example of the lack of joined up holistic thinking within the conventional medical community where GP's, Cardiologists, Psychologists are all working in their own silo with little to no crossover in their knowledgebase.

My dad developed heart failure and mitral valve prolapse which I have no doubt was due to his sleep apnea, he heart was on the redline each night for his untreated apneas and ulitimately I suspect the value prolapsed due to massive wear and tear during the night.
He was fit slim and health to this, but due to his structural issues he had sleep apnea which I believe went undiagnosed for a long time. As It sounds like you are well aware, sleep apneas has a variety of effects on the cardiovascular system, as well as hormones involved in anxiety. Betablockers are the easy fix and my Dad was on Propanol too, didnt do his brain or energy levels any favours at all and he came off them and once he was on CPAP therapy he didnt need them as his blood pressure and heart rate was normal during the night . He also had palpitations when he developed heart failure prior to CPAP and likewise gone once on therapy.

Regarding the reason for the use of BIPAP some people struggle with CPAP and also experience anxiety from having to breathe out against pressure. BIPAP removes/reduces this element and improves comfort for people who suffer from this. There is also a case for BIPAP being a superior mode of treatment as the reduced pressure during exhalation allows for better ventilation. Certain types of Apnea and respiratory conditions need to be treated with more advanced modalities than CPAP can provide, hence why the various machines and modes exist.
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#15
RE: Struggling to treat UARS with BIPAP
Within the Resmed Range I have only seen that the UK/European Lumis 150 ST-A and the Aircurve 10 ASV auto trirates both EPAP and PS independantly. As you state PS is fixed on the Aircurve 10 and only EPAP adjusts. PS just moves as a fixed sliding scale which is a big problem if you need both high PS for support and high EPAP to clear OA's as you end up with a very high IPAP and thus mask leaks.
From another recent conversation on here it sounds like the Lowenstein Prisma ST series units have an independantly configured PS range separate from EPAP so it may also be worth investigating if you can get your hands on one of them.

Do you have iVaps mode on your jailbrake device?

The waveform you displayed on ASV mode looks perfect (to me at least), have you exported the 17.5/8 pressures to S-mode and seen what effects that has? I dont know a lot about ASV, but I guess its probably not as simple as that and its doing more advanced monitoring in ASV mode and applying other elements perhaps to keep things stable. As I recall from another post ASV mode is very limited and is more of a set and forget type of thing where you cant adjust much in the way of parameters right?

You mentioned that PS of 9.5 is what worked best, if that is the case, then it would make sense to focus on the trigger settings and see how high can you raise your PS and keep CA's under control. Remember it may be the case that the CA's subside as your body adapts so you will need to work upto 9.5 incrementaly over time.
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#16
RE: Struggling to treat UARS with BIPAP
Hey Lisa,

When heading to bed, I like to fit my Evora FFM by turning on the machine and setting IPAP high (20-25), then adjusting it until I feel no major leaks.
This explains why I always get a cluster of leak spikes at the start.

As for the CA events, these clusters happen at the start because I'm still awake and I deliberately try to keep my respiratory rate low as I find that helps me fall asleep. When I first started BIPAP therapy around 2 months ago I did have extreme anxiety, and it took at least a week before I could even fall asleep — now that happens every night and within 20-30 mins usually.

On this particular night I had a cluster of CA at the end because I had woken up around 2:25am, then tried and failed to fall back to sleep i.e. it was just awake breathing being flagged as CA.
Otherwise, on other nights, I still get CAs (if not using ASV mode) but they don't appeared to be clustered (see attached example of BIPAP S 14/8).

I think EPAP was much lower than usual tonight because I spent practically no time in REM — Fitibt indicates only 3 REM periods lasting only 5,5,7 mins respectively, so I assume my airway didn't have the opportunity to become as obstructed as it normally would.


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#17
RE: Struggling to treat UARS with BIPAP
Hi,

I don't know much about CPAP/PAP machines so i defer to your information about V-Auto. I did not know that the V Auto (ASV?) is the only type of machine that can independently titrate EPAP and PS. So im wondering if my BiPAP will be adequate (it cost me $2200, which i don't have).

As for the "palpitations" they got worse in 2006 (prior to that, i had a very low level "buzzing" sensation in my left chest) and they came with a grinding/rumbling sensation in my chest, and associated panic attacks. The Propranalol resolved them (120 mg) but six years later (not yet on CPAP), they returned. At that point, i started using a CPAP and they went away again, as long as I was taking Propranalol. The short answer is "no". It took me 27 years to find out what was causing these (i didn't have a clue they could be caused by apnea or hyponeas). Everyone is telling me they're benign and to ignore them; but none of these people has sleep apnea. I do believe they're benign but i also want to prevent or minimize them as much as possible; if i don't treat them, i get accelerated heart rate and, when i try to sleep on my left side, a pounding/bounding heart beat when i wake up, making me feel like i have mild MVP (though my Cardiac workups don't show anything significant).

I slowly weaned myself down from 120 mg Propranalol in 2006 to 20 mg in 2022, because i felt the beta blocker was possibly causing some symptoms; and i was concerned because beta blockers can apparently cause heart failure in some people. However, in 2023 the "palps" came back. I have gone through the same tests i did before about a year ago (treadmill, Echo, Holter) but the "palps" don't show up.

What does it feel like? I am forced awake by "wobbling/vibration/fluttering" sensation in my left chest area; but i don't know what it is. Not knowing what it is always frightens me a little; but they always subside. They were much worse in intensity a few months ago; but they appear to be dissipating with the BiPAP therapy. I know for a fact that i get the "flutter" even when sitting up and i start to snore.

I don't want to take sedatives and did not need to take any prior to Spring, 2023. Without them i get less sleep (six months ago it was only about 2 hours straight then i would wake up; now it is much longer). I believe over time, with optimal therapy, the "palps" will dissipate but it may take more beta blocker than the 30 mg i am currently taking (though as i mentioned, i'm trying to get off them but it's been 16 years already).

There is definitely an anxiety component but i don't believe it is solely related to the PAP therapy; in fact i am used to it and was using CPAP for nine years without much trouble. Constant stress in my marriage over finances and different views of life, induced severe anxiety in me regarding my future; only recently has this become much less of an issue (after i was hospitalized for severe panic attacks).

I know my therapy seems to be working; but i believe i don't have the most optimal settings on this new machine as i'm still getting residual Hyponeas even when the OSA is zero. But, if i increase PS or EPAP too much, i start getting a lot of aerophagia and this causes my stomach to press against my vagus nerve and heart and appears to also cause "flutter." I am working on losing weight (currently 77 but used to be 90 kg) and i used to drink at least 30 ounces of alcohol a week (mainly wine) but i have stopped that altogether.

Thanks for your feedback. Any help at all is greatly appreciated!

Paul
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#18
RE: Struggling to treat UARS with BIPAP
Hi ewriter,

I have almost the same exact machine as you, the ibreeze 30sta. You can see some of the things I learned by clicking on my profile and finding the thread entitled: "I got a ResVent 30STA Bilevel". I've been exploring the settings more since then and I'd be happy to talk about what it can do. ..

However do you have a dedicated therapy thread? Maybe we can get an admin to help sort your posts into a separate thread so we don't get confused between your and the original OP (unless I'm confused and that's you Wink ).

Lisa
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#19
RE: Struggling to treat UARS with BIPAP
(04-19-2024, 11:41 AM)ewriter Wrote: Hi,

I don't know much about CPAP/PAP machines so i defer to your information about V-Auto. I did not know that the V Auto (ASV?) is the only type of machine that can independently titrate EPAP and PS. So im wondering if my BiPAP will be adequate (it cost me $2200, which i don't have).

Hi,

To clarify the ASV and VAuto are two different models. They are both from the Aircurve 10 series but not the same in functionality. Only the ASV has the adjustable range for EPAP and PS, not Vauto.

I too also had palpitations develop out of no where a few years ago, I went to a cardiologist who said they were benign and nothing to worry about. My echo was perfect but the ecg showed there were there. I refused to accept they were benign as I went from never having them to having dozens of them a day overnight.

I did my own research on the topic and identified the most common different causes of palpitations with the most common being:


Elevated adrenaline and cortisol (stress)
High levels of serum calcium (calcium in the blood)
Electroylte imbalances (too much sodium, too little magnesium)
Alcohol. (Alcohol also disturbs the heart rhythm over time)
Caffeine (alters cortisol and stress hormones and disturbs sleep quality)
Nicotine

Untreated Sleep apnea

My weight has never been an issue and I am fit, so I started to work on each of the other items above. I started with Alcohol, this made a big improvement but didnt resolve it completely. I found Alcohol to be a trigger of palpitations, in that they would become worse when consumed, but they would not disappear when eliminated.
I corrected my electrolytes but supplementing magnesium daily, our diets are typically sodium heavy, and our foods is magnesium deficient, so magnesium helps offset this.Incrementaly improvement but no resolution.
I did what I could to eliminate stress, some lifestyle changes and changes to work, no noticeable improvement.
This left only possible cause, calcium. I did a test and discovered my Vitamin D was low and sure enough my blood calcium was higher than normal. I started taking Vitamin D and Vitamin K2 MK-7, both of which are involved in regulating calcium. In particular Vitamin K2 helps to direct calcium to go where it needs to, i.e in your bones and teeth etc. I played around with different doses and found when I took a double dose of K2 my palpitations stopped completely and would not return for two days. I could repeat this multiple times with success each time. Anyway to cut a long story short calcium was the cause and I went to an endocrinologist and surgeon did further tests and I had hyperparathyroidism. One of my Parathyroids glands was overproducting calcium and had to be removed surgically. The day after surgery my palpitations had gone and never returned. Calcium was the cause.

In my Dads case his palpitations have gone and that is due to sleep apnea treatment. I would suspect yours are tied into the fact you have sleep apnea and stress, but other factors could be at plat. You are eliminating the other possible causes excess weight and alcohol these will all help, but perhaps some nutritional changes may also help. Pretty much everyone is Vitamin D deficient in the western world, too much time indoors and we wear clothes, which covers up our natural vitamin D production facility, namely our skin. Likewise most peoples diet is sodium heavy and our soils are are depleted of magnesium so the potential for electrolyte imbalance is common.



Good observation about the vagus nerve, that too could play a part.
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#20
RE: Struggling to treat UARS with BIPAP
Hi,

Thanks for the helpful advice. I have had this issue for many years (not sure how long but at least since 2006) and only in the past year have i bothered to check my PAP data (before, i would just go to sleep and never much worried about it); i also am pretty sure i avoided using PAP when i was feeling really good, which was often; i'm not sure but it could be that i sometimes only used PAP less than seven days in a month and even less.


I suspect the failure to use PAP led to daytime sleepiness last year, microsleeps while driving which almost got us killed, and this "flutter" becoming more noticeable and lasting longer. I have been working very hard to change things: monitored my PAP data daily until i started to get more than 2-3 hours' sleep, stopped drinking alcohol altogether pretty much, stopped occasional smoking of pot, started exercising at the gym 3-4 times a week, and radically changed my diet to mainly veg and protein (so far i have lost a few kg but my BMI is still about 27 and i want to get down to 70 or 72 KG. I have also started supplementing with Natto (good for the heart), and have bought a subscription (actually, my wife did) to Amway Nutrilite supplements and breakfasts to help me lose weight.

I am not fully recovered yet but i believe i will recover over time. My AHI is almost zero now on the new machine (iBreeze 25 AST) but, i know that AHI is only one measure. I prayed more in the last 16 months than i have in my whole life.
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