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[Treatment] Struggling to treat UARS with BIPAP
#1
Sad 
Struggling to treat UARS with BIPAP
Hey everyone, I'm new to the forum and by now I'm mentally exhausted from +8 years of unrefreshing sleep, so apologies in advance if I don't post this right.

I've tried to treat my UARS in the past with CPAP, but it always felt like it was hard to inhale and exhale, and I never got refreshing sleep from it.

Eventually, with the help of someone else,  I managed to convert my AirSense 10 Elite into a BIPAP machine using the AirBreak modification — it has S, ST,  VAuto, ASV, ASVAuto available on it (CPAP and APAP too, but I don't see how they'd benefit me), and I can change most of the settings like trigger/cycle/rise time etc, however, there is no option to disable or lower the backup rate on ST or ASV modes.

Attached are some of my sleep metrics for last night where I used BIPAP S mode IPAP=13/EPAP=9/trigger=high.
As always, it felt like I had to put extra effort into breathing even whilst awake, and I believe I'm seeing flow limitations in OSCAR — no surprise then that I woke up exhausted and unrefreshed today.

From my understanding thus far, I need to increase the pressure support to treat the RERAs, but whenever I go past 4cmH2O of PS I get significant clear airway events. I have not yet tried EERS, nor have I tried increasing rise time or cycle sensitivity to reduce CO2 washout — the only compensation I've made for TECSA is to switch trigger from medium to high.

I tried ASV mode with EPAP=8 and minPS=5/6. Both times it led to poor sleep with lots of full awakenings — I suspect the high backup rate and the wildly changing pressures were causing the arousals, although it could have been RERAs as my flow looked limited despite the high minPS,

Does anyone have advice on where to go from here with my BIPAP treatment? I desperately need a good night's sleep Sad


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#2
RE: Struggling to treat UARS with BIPAP
Hi,

Is there a particular reason why you are using Bipap S mode instead of the Vauto mode.

I would switch to Vauto as your first line of treatment as S mode cant adapt of increase pressures as needed to clear events when they occur.
The chart you posted says you had no flow limits during the night.

It is common to experience CA's when increasing PS  and there are various things you need to do. Firstly it takes time for the brain to adapt this can take days, weeks or even longer depending on the person. When increasing PS increase by 0.2 only and then leave this for a few days, then adjust again by 0.2 if needed. Other things you can so is increase trigger to very high which can also help. Another option is to temporarily reduce timax slightly whilst your body adapts and then extend it back out again after a week or so but I wouldnt recommend that and only suggest that as a last resort if CAs are proving problematic.

I would increase your max IPAP to give your machine room to adjust up and down in Vauto mode. Once done so you can then see how it behaves and whether its hitting the max pressures while trying to deal with events, in which case you can increase it further. 

I presume you are following some of the general guidelines on good sleep hygeine
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#3
RE: Struggling to treat UARS with BIPAP
Please read the links in my signature for “Organising your OSCAR charts”. Seeing the left hand column and requisite  graphs would be most helpful.
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#4
RE: Struggling to treat UARS with BIPAP
Hi SingleH,

Sorry for the long delay in getting back to you, I fell ill the day after posting.

I was using S mode because most people on r/UARS and r/UARSnew recommend it over VAuto — something about UARS people being more sensitive to pressure swings from modes like APAP, VAuto, ASVAuto.

I did try VAuto mode (PS=5, minEPAP=6, maxIPAP=18) last night in the hopes of, if not fixing my sleep, at least getting an idea of what EPAP I need: it seems to be between 6.86 (50% percentile) and 7.76 (95% percentile).
Despite apneas, hypopneas and centrals being controlled (trigger was set to very high) and a decent PS to combat RERAs, the sleep felt unrefreshing, like I couldn't enter SWS or REM and was just stuck in light sleep. There were at least 3 times where I woke up completely for no obvious reason.

Where do you I think I should go from here?

I've noticed that leaks seem to coincide with my flow rate spikes — hopefully my F30i will arrive in a few days and I will be getting comfortable, leak-free nights (currently using small F20 mask that came with my AirSense10).
That being said, I believe I will still see fragmented sleep even after fixing the leaks completely. This is because I've noticed that my sleep appears to be less fragmented when I'm on the lower pressures, despite getting similar leaks and having more OA/H events.

Yes, I like to think I practice decent sleep hygiene i.e. I avoid screens for 1-2hrs before bed, go to bed consistently at around 11, bedroom is cool and dark, I don't eat within 3hrs of sleep (especially anything with sugar).

Hey Peace,

Thank you for the guidance on posting OSCAR charts — hopefully the one I just posted ticks all the boxes, let me know if it doesn't though!


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#5
RE: Struggling to treat UARS with BIPAP
Hi,

Thanks for the UARS info, I had not heard that issue about pressure swings specifically referenced to UARS, but I think in general the pressure swings can cause problems for a lot of users.

Based on what you have shown, I think the first thing to do is to get your mask setup in order as clearly you have a issue and it would be good to see what your figures and Oscar data looks like once you have addressed this first.

Would you be able to upload another set of screenshots once you have the new mask. No need to send one for the waveform as that looks pretty good as it is.

Also assuming you have solved the leaks or reduced them could you pin the flow limits or mask pressure graph instead of leaks. You can also put another screenshot with a different set of graphs pinned such as respiration rate so we can see more information.
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#6
RE: Struggling to treat UARS with BIPAP
Sounds like a plan! 

Once my F30i arrives in the next few days and I can bring down the leaks, I'll send over new screenshots with what you requested visible.

Thanks again for offering to help Smile
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#7
RE: Struggling to treat UARS with BIPAP
Ok, so the F30i turned out to be dud — uncomfortable, hard to breathe and leaked everywhere — so I had to replace it with an Evora FFM which seems to leak very little even at high pressures if I combine it with mouth-tape and a soft cervical collar.

Here was my sleep last night on VAuto (PS=5, minEPAP=5, maxIPAP=18) with minimal leaks.

The sleep was thoroughly unrefreshing. At around 2:25am I woke up and my heart was racing, face and limbs were tingling, very anxious, overheating/sweating and my breathing felt restricted — I suspect I was experiencing hypocapnia/respiratory alkalosis.
I turned the machine off, then back on again and tried to fall asleep but couldn't so I eventually gave up and slept without PAP.


It's worth noting that, unlike on other nights, I slept on an inclined bed this time, and over the last 2 years I'm slowly coming to the conclusion that the inclined bed makes my sleep worse. Since I can't handle a modest PS (5) on an inclined bed (I could handle it on a flat bed), I think that it makes TECSA worse, probably by messing with blood circulation.


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#8
RE: Struggling to treat UARS with BIPAP
Hi,

Thanks for the screenshots.

The first thing is the bulk of events is coming from Central Apneas which you alluded to earlier. I would suggest changing your trigger setting from Medium to High. This can help address central apneas. If they persist change it from high to very high. But start with high first and see how it goes. If you find this works, you may be able to slightly increase your PS further.
If the CA's do come under control then only adjust your PS up in a small increments of 0.2 and then leave for a few days or a week. The brain is supposed to adapt to the changes over time and one study I saw said it needs one to three months for the brain to adapt and CA's to resolve. Some people can be more sensitive than others.

Alternatively if the CA's persist and you cant increase your PS, then you may want to try raising your min EPAP to add more volume to your breaths.

On the topic of sleep hygeine, do you have a window open in your bedroom, or is your room essentially sealed, ie shut windows and doors? I would highly recommend purchasing a CO2 monitor for your bedroom, such as Aranet 4. Making sure your room CO2 is less than 1000ppm ideally something like 500 when you go to bed. Paying attention to this has been a game changer for my sleep quality.
I also believe I have some kind of UARS that I am developing due to issues with my turbinates and I have found paying attention to ensure air quality in the bedroom is optimised. As mentioned above CO2 is one thing, but also dust, particulate matter (PM), allergens, mould and bacteria all play a part and also for example can cause your turbinates to swell or affect your sinuses which in turn affect your airflow.
I highly recommend having a hepa air filter that has a night mode in your bedroom, but even more importantly a unit which has some kind of bi-polar ionisation (not negative ion) such as sharps plasmacluster or panasonic nanoe-x. The bi polar ions replicate more natural outside air and help elminate dust particles in the air along with neutralising moulds, bacteria and allergens which cant trigger reactions in your airways. I have used and tested bi-polar ionisers in industrial environments first hand seen how effective they are for microbial control. I have one of these in my bedroom and since using it I find it reduces my tendancy to switch to mouth breathing as my nose is blocked less.

Obviously the CPAP machines have their own filters, but they are somewhat primative and I suspect limited in their capacity to improve air quality.
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#9
RE: Struggling to treat UARS with BIPAP
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.
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#10
RE: Struggling to treat UARS with BIPAP
Hi,

I don't know if i can help but i will try. I started my apnea journey (AHI 23) in 2005 but refused to buy a machine. I thought it was unbelievable that i had such a condition and i only had a 28 or so waist at the time! After suffering some strange "palpitations" i began to suffer panic attacks in 2006 but didn't know they were panic attacks. Now, my GP in Canada is trying to label me with MDD and GAD because of my anxiety relating to the "flutter" that i was dealing with in 2006 and before. I was put on Propranalol (120 mg) in the UK for the panic attacks, which subdued the "flutter." Unfortunately, no doctor connected the "palpitations" to my refusal to get a CPAP the year before, and the Rx of sleep apnea (AHI 23). I fully recovered from the panic attacks and the "palpitations" without knowing that sleep apnea was definitively the culprit (my current Canadian doc stated in my records "we do not know that his palpitations are connected to his sleep apnea' and has sent me to the Psychiatrist. Eventually, i was put on antidepressants and this unhelpful doctor allowed me to request 3 or 4 different types, which i suggested, and i was on Seroquel, Mirtizapine (the single one she prescribed), Trazadone, Effexor, and something else, in one month. All of which made me much worse.

To cut to the point, i abandoned my Aire10 Autoset for Her, which i bought in 2020 after my third sleep study, where my AHI was tested at 7.00. I was even told (the same doctor that treated me in 2005 and found AHI of 23) that "you don't have sleep apnea" (but i had been using a CPAP, a Respironics System One, for nine years at that point, pressure 13-14)! and bought (March, 2024) a iBreeze Resvent 25 STA BiPAP which i am trying now.

After 9 years on CPAP (12.5 - 14 cm), 3.5 years on APAP (Autoset for Her, then Autoset pressure of 13/8 similar to yours), i am now using the Auto version of the BiPAP and still find that it feels a bit like i am breathing against the pressure (but not so much). So, i suggest you try a BiPAP Auto mode and allow the machine to auto-titrate your pressure, pressure support and other variables until your AHI is zero or close to it BUT you also get (1) refreshing sleep and (2) feel good during MOST of the day. Currently, i can usually only sleep with meds like Zopilcone or Dayvigo and some Clonazepam. If you don't want to switch to a BiPAP machine, try straight CPAP at the lowest pressure but use an Auto setting to try and get the machine to auto-titrate your pressure support (EPR). I did use an Aire10 in Autoset mode for 3.5 years BUT i only noticed in 2023 that the APAP mode seems to pulse the flow of air, which might induce arrhythmias (?) in sensitive people. I don't like the design of this machine and feel that APAP modes ('smart' machines) all made in China like something else i could mention, could be a bad idea from the outset. Again, try CPAP and find the best setting with CPAP. I seem to be able to always get AHI = 0 on a CPAP so i don't see why any other mode (APAP, BiPAP) is actually necessary. When i run into significant apneas and hyponeas and Flow Limitations, and know i am experiencing significant apneas and poor therapy, i make sure i wear my neck brace, mouth tape, and switch right back to CPAP mode.

I hope this helps!

Note: i weaned myself down from 120 mg Propranalol in 2006 to about 20-30 mg/daily now; but even though my heart rate drops to 40s at night and 50s during the day, my (numerous) Cardiologists don't care whether i have Brady that forces me awake, or not. The latest Cardiologist i have seen (all three of them in the last year including a Specialist) all insist i am suffering health anxiety and need medication -- because my symptoms don't show on their instruments (and i thank God they don't and i believe they never will).
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