Suspected UARS, at a loss with path forward - please help!

[Winter247]

Hi all, 

I did a PSG and was diagnosed with mild obstructive apnea have struggled to find solutions. After starting PAP therapy 4-5 months ago, I have undoubtedly improved with fatigue, brain fog, difficulty concentrating, but I know there is a long way still to go and I feel I have plateaued in progress. I recently met with my doctor who scheduled me for a titration study to potentially explore (and justify to my insurance) BIPAP, but that study is several months out.

General info:

• I am 29, 5'11 and 165lbs, which led disordered sleep causing my extreme fatigue and brain fog to be overlooked by physicians. I spent a full year ruling out any other typical physiological cause of my extreme fatigue and brain fog. 
  
• I use a cervical collar and nasal dilators each night.
  
• I almost immediately switched from my prescribed APAP (5-15) to a CPAP. I was quickly able to titrate to remove all apneas and hypopneas (at 6 IP, 4 EP), but this did not change my symptoms at all and I still saw very consistent flow limitations and wake events, so I have slowly raised pressure since then.
  
• I have found that I am unable to consistently tolerate (waking, aerophagia, increase of CA) pressures above 11 IPAP, 8 EPAP, though I only tried for a few weeks. Unfortunately, I really feel the effects from a few nights of even worse sleep and, as I am working on my dissertation, it's a pretty rough time to sacrifice the sliver of quality sleep that I get.
  
• I do think that raising the pressure & EPR at max has helped some with flow limitations, but as the PAP does not accurately measure this, I cannot tell for sure.
  
• I will be trying a nasal pillow mask starting tonight
  

Lingering issues and factors with my current CPAP settings:

1. I still wake up very frequently every night. On the very best nights, it is as few as a couple times, on an average night, at least 10 times consciously waking
   
2. I have used a pulse oximeter several nights and my O2 is below 95% about 50% of the night and I have several drops just below 90% each night
   
3. My events and wake-events definitely worsen during REM, something that was noted during the PSG.
   
4. I have a very low percentage of my night spent in REM, usually about 10% of the night in REM (both PSG and with Apple Watch show this), though this has improved as I raise my pressure. However, as I have raised my CPAP pressure, I have a significant increase in CA events, wake events, and aerophagia. 
   
5. I am confused and slightly concerned that my tidal volume (for my height and weight) and expiratory time seem so low - could that be a symptom or factor? I have read that the machine can often incorrectly measure expiratory, but I don't think that it is inaccurate. My expiratory time median is usually between 1.2-1.5 seconds and is significantly less than my inspiratory time. Also, my breathing seems generally quite shallow to me, but I could be wrong. 
   

While I see a lot of hypopneas and flow limitations, my breathing has some periods where it seems to look good, but then I'll (suddenly, as it seems to my novice eye) have abrupt, chaotic breathing that I assume means I awoke. I do see that there are sometimes increased leaks rates during these times, but leaks are never high. I also see (what appears to me as) periodic breathing. I used the Glasgow Index resource and it shows my breathing to have a high level of Variable amplitude, aka broadly unstable breathing.

Long story short, I'm not sure what to do next. Should I adjust my pressure or try something different? Do I need a different machine? I have attached a few OSCAR screenshots, my sleep study, and have linked last night of SleepHQ data which includes sleep stage data. Please let me know if you would like any additional screenshots and I will find an alternative. Thanks in advance to all who read this.

Polysomnography
Last night SleepHQ

[Winter247]

It seems as though the attachments did not load or I'm missing something. Either way, here they are.

[LeakySleeper]

Hey Winter247 - I'm new here, but it *may* pay to attach screenshot of the full night (zoomed out).
I've seen more experienced members ask for the full night to get an idea on your leak rates & flow rate changes to compare against events.

My tidal volumes and AHI scores are similar to yours (along with a similar build) so I'm hopping on for the ride.
Fingers crossed someone with more experience can chip in and give guidance!

[DaveSkvn]

Hi Winter247,

I'm completely unqualified to pontificate on this stuff but looking at your flow rate graphs, what I'm immediately struck by is there is "no rhythm to the breaths". Looking at my own breaths, they have clear signs of various flow limitations at various times but typically there is a steady rhythm. 

   

Over minutes that morphs into a different set of problems. Your breathing bounces from one problem to another in seconds. Its thus outside my experience and I wouldn't take much notice of what I've said elsewhere about EPR etc. The first thing I think of is that something needs to create a regular breathing pattern which in turn makes me think of an ASV machine rather than bi level. I'm not sure if its meant for this kind of issue but its aim is to spot irregular breathing and create regular breathing. Since you are having a titration study it might be worth trying to make it a bi-level AND ASV study. I don't think optimizing for AHI is very relevant. The test should be creating a regular breathing pattern.

If you are working on your dissertation and may have some flexibility in your schedule, a word on coping behavior. I found I needed a nap each day which would clear up fatigue and allow me to focus. The fatigue would set in at random times between 10am and 4 pm. In the end I set an alarm at 0700. Did some exercise (weights / walk / run) at 0730 then a shower and breakfast. At 0930 I was ready to return to bed (without the exercise this didn't happen) and sleep to an alarm at 1100. I would then be alert and focused for the rest of the day. Far from ideal but better than losing the day and sleeping at random times. It may be useful to you.

Good luck.

[Winter247]

Great idea, thanks! Here's the screenshot of the full night. I added two OSCAR flags - IF1 is for 10 seconds 80% flow and UF2 is 5 seconds at 50% flow.

[Winter247]

Thanks for the response. Yeah, the lack of waveform stability seems concerning to me, so I hope to have further, more knowledgeable insights here. 

So... turns out I actually have the titration study tonight (it really helps to get on a cancelation call list, y'all!). I know that we'll try bi-level, but I also know that sleep techs are often trained to simply get the AHI as low as possible and that is irrelevant in my case. Would you, or anyone, recommend how I approach discussing the titration with the sleep tech? Can I advocate for the use of an ASV machine in the titration? Will they be able/willing to titrate according to breathing waveforms and consistent breathing, as opposed to AHI? 

Also, thanks for the advice on naps. I'll try those - anything to get me through the finish line with this.

[Dormeo]

I don't myself think ASV is going to help you. What it's clearly good at is treating central and mixed apnea; while some people think it can be useful for treating UARS, others do not. And in any case, I'm not seeing any clear evidence that you have UARS.

All that irregular breathing is arousal breathing. When you have fewer arousals, you'll have less irregular breathing. The causation doesn't go the other way around.

I hope this study can find settings to reduce your arousals during REM sleep. You might mention this issue to the tech, along with the fact that your arousal index was over twice your AH index.

A couple of other quick things: do you still have parasomnias? And have you discussed with your doctor the effects of your medication on your sleep? (It might be helping, or it might be hurting.)

I really hope this sleep study will shed further light on your sleep problems. Keep us posted!

[Winter247]

Thanks for the response. What would clearly indicate UARS for you? 

I mentioned the REM awakening events to the tech. The parasomnias were very minor sleep talking and groaning and, to my knowledge, these have gone away as a result of my CPAP. I also have discussed the meds - I started them fairly recently (past 3 years) and take them in the morning as they help me cope with brain fog and fatigue, but my sleep difficulties precede the meds at least a decade. 

[Dormeo]

Significant flow limitations are the hallmark of UARS. More here:

https://www.sciencedirect.com/science/ar...l%20(RERA)

And here:

https://www.ncbi.nlm.nih.gov/books/NBK564402/

[srwilsn3]

Winter247, we seem very similar in our pathologies and other stats (height, weight). We're obviously not 1:1s, but I wanted to share my therapy thread in case it could be any help at all: https://www.apneaboard.com/forums/Thread...APAP-BiPAP