[CPAP] Newbie with CSAs, struggling with CPAP therapy

[Llort]

Hello and thank you, Apnea Board Community!

I'm grateful for the forum, OSCAR, and all the amazing resources here.  You all are giving me hope.

Symptoms:
I've been waking up seeing spots for about a year now, and having debilitating dysautonomia and MCAS-like symptoms on/off since August 2022.  POTS and in-bed tachycardia, muscle tremors, chest pain, brain fog, nausea, depression/anxiety, tinnitus, orthostatic hypotension, rashes, etc.  A 30-day heart monitor showed 1% PVCs and occasional PACs, but otherwise good.  

Studies and Results:
I got my Overnight Oximetry on 8/18/22 (ODI 41, SpO2 69-100%, Avg SpO2 92%, Pulse 42-139, Avg Pulse 65).
Home Sleep Apnea Test on 10/20/22 (REI 17.7, OAI 1.6, CAI 5.6, MAI 0.7, HI 9.8, Sp02 81-97%, Avg Sp02 90%, Pulse 53-203, Avg Pulse 70)
Overnight Sleep Lab Titration Polysomnography on 12/08/22:  Only slept 22 minutes, CAI 13.6 (5 CAs), AHI 16.4 (1 hypopnea)

Prescription:
I was prescribed an APAP (ResMed AirSense 11) at 6-12 cmH2O and picked up the unit on 1/25/22.  The local sleep lab is overwhelmingly busy - I just got a 10 minute phone consult, pressure adjusted to 5-9 cmH2O.  I can't get in to see the FNP until Day 80 of treatment (mid April).  She recommended making a cloth mask cushion to help with leaks.

I'm doing another overnight oximetry tomorrow.  I've got a Wellue O2Ring on the way.  

Questions/Concerns:
Part of my confusion is that the sleep technician and FNP tell me that obstructive apnea is my main problem.  I look at the studies and see a lot of central apnea, and now my CPAP data in OSCAR is showing mostly CAs.  I'm worried that I'm going to have to fail the APAP over several months before I can try a different therapy.  The first two weeks of therapy were good and getting better, and then everything crashed around February 8.  As it is, I'm miserable in the mornings (sometimes good by the end of the day), and unable to work or function much of the time.  I've been using the family oxygen concentrator to try to pull myself out of the morning hangovers (it seems to help).

My CAs get much worse toward the end of the sleep cycle.  If I can wake up before they ramp up, I feel better (if very sleepy).  I also do better when I have fewer mask leaks.  I haven't tried a soft cervical collar yet, but am open to it.  My only known risk factors for CSA are high altitude and autoimmune disease (though I do take paroxetine, famotidine, and cetirizine).  My overall AHI isn't that high, but I get very symptomatic after an intense period of apneas.  

My PCP has better availability - should I try to have her monitor this instead of the sleep lab?

Any ideas for reducing CSA events?  Do I need to push the sleep lab harder to recognize the central apnea?  Are there ways they can help me that I'm not thinking of?  

I'll attach my latest OSCAR data (two days because of the way ResMed splits them at noon) and the overview.  

Thank you,
Dani

[Llort]

August overnight oximetry
December sleep lab summary

[Llort]

Home Sleep Apnea Test Results (October 2022)

[Jay51]

Hello Llort.  Welcome to apneaboard.  Since you live at 7400 feet, altitude could be a major contributor to your CSA.  

The CA's on your OSCAR may just be treatment emergent (may go away in time) or they may not.  

The Airsense 11 autoset should help treat OSA.  A soft cervical collar could help to stop the hypopneas that have "clustered" on your chart.  

Your leaks are bad.  Stopping mask leaks could help.  

Your respiratory rate is on the high side (17 median if I recall).  Normal is 12 to 20 or so.  

Tidal volume was low at around 250 or so.  Adult male is around 500.  Adult female around 400.  Child around 300 or so.  

Your sleep study says you may qualify for supplemental oxygen.  I would definitely pursue this.  Using it during the day could help you.  Also, it could be set up as an o2 bleed into your mask at night to increase your o2 and possibly decrease CA's.  One member here recently basically cured his CA by using only supplemental o2 at night.  You have OSA also though.  

As to your question of involving your PCP or not, I definitely would.  Then you have 2 professionals to go to and ask for help.  

Keep watching your OSCAR over time to see if your CA's decrease also.

[Llort]

Jay51,

Thank you so much for all your thoughts on this!  

I think you are referring to knuddr's reports on oximetry and high altitude?  http://www.apneaboard.com/forums/Thread-...er+central  That thread is fascinating!

I really appreciate that you've highlighted things to look into: mask leaks, SCC, tidal volume, resp. rate.  It helps me narrow down what to work on.  Re: tidal volume:  I used to play trombone some - maybe I ought to pick that up again.  Despite a bronchial atresia, my lung volume is good - I'm going to see if there are any daytime exercises that might help with my sleeping volume.  I've got a condition that puts me at risk for interstitial lung disease, so I'm eager to do whatever preventative/baseline health measures I can. 

Thanks for the feedback on looping my primary care in and asking for oxygen.  I'm going to pursue those.  Dang, those mask leaks - I can't figure out why I'm getting so many more now than when I started.  I'll go through the mask primer on here again. Maybe I should call the tech who set me up and swing by the office when she's in.  I didn't think to mark the settings on the head gear from my setup session.  I suspect I move a lot in my sleep, and that doesn't help.  Maybe I'll try a a sleep on my back without a pillow, and see how the data looks.  

It's funny - I'm feeling much better than usual this morning, even though my AHI is still 12.75.  I noticed the apneas were clustered differently.  I wonder if that makes a difference.  

Thanks very much for your help!

~Dani

[Jay51]

You are welcome Dani.  You seem to be taking an average to slightly above average respiration rate during the night, but your tidal volume with each breath is lower than normal to equal your median 240 tidal volume.  Not exactly sure what is causing this, but could be several things.  See if the soft cervical collar improves hypopneas. 

Another long term thought:  there are more advanced machines that control more and more aspects of therapy.  I have landed at the ventilator level (I am not in any way suggesting that you need a ventilator).   Time will tell if this Airsense 11 will be able to treat you sufficiently (how low your AHI gets and how well your CA's and Hypopneas can be controlled.   The way the medical system works, it usually requires documented failure at the entry level of machine in order to move up to the next level of machine.  Also, if you were to receive a respiratory diagnosis, it could qualify you for a more advanced machine also.  

It might take showing and explaining to your sleep lab and PCP your OSCAR charts, SPO2 recordings during sleep, AHI, etc.  if your results don't improve with the Airsense 11.

The magic number for the medical system is usually 5 AHI.  If you are here or below, then they usually think that you are being treated sufficiently.

[Jay51]

Also, by signing up for Resmed's "MyAir" app.; then your healthcare providers will be able to see your higher than normal 12 AHI (can help speed up the process up for you).  They use this app to track your compliance usage hours and days (and see if your AHI is below 5).

[Jay51]

One last thing.  Raising your EPAP maximum pressure above 9 may decrease your hypopneas.  But it could also raise your CA's.  The higher EPAP is the stent or splint that keeps your airway open.  You can try this in very small increments to see if it helps.  Or just wait for the soft cervical collar and try it with this pressure.  And then if collar doesn't work try increasing EPAP max slowly and look at the results.

[Llort]

Jay51,

Thanks for those ideas.  I am set up on the MyAir app.  I suspect I'll have to reach out to the sleep lab regularly if things do not improve, because they're too understaffed to monitor my progress without an appointment or a nudge from me.  My PCP can be my back up (they're busy too, but usually reply to inquiries within a day or two, and I can get an appointment in weeks instead of months).  

I wonder if the hypopneas may be more related to the CSA than OSA?  Could it be that my body isn't getting the C02 signals to take a larger breath?  I'd be afraid to raise the EPAP due to all the CSAs (then again, lowering from 6/12 to 5/9 hasn't seemed to reduce my CAI any).  I'm wondering if I'm going to end up needing ASV.  

Still trying to figure out the leaks.  I rewatched the ResMed videos and ran through the Mask Primer again.  I had a lot of larger leaks in the first half of last night.  I got up in the middle of the night, washed my face and mask again, and then slept propped up.  I still had some small leaks, but that took care of the large ones.  I wonder if anyone successfully used something like chapstick to help the mask stick to their face?  My skin isn't very oily - everything's pretty dry (face, mask, and air).  I wonder if the dry desert air has affected the silicone in the mask already?

I appreciate your help!

~Dani

[Jay51]

You raise some very good questions about hypopneas and CSA that I cannot answer.  But a guess is that the Resmed machines and OSCAR may have a difficult time distinguishing between a hypopnea and a central apnea based on how much effort is put forth to inhale.  And at very low levels, it seems like it would be very hard to distinguish between the two IMO.  Living at 7400 feet may factor into the equation also.  And then there is the dysautonomia (which probably has exacerbations and remissions - which could affect AHI).  

I have put a lot of time and effort into getting the correct mask set up, and is has been worth it to me.  I started with a Philips amara gel mask free from DME.  Didn't work for me because too long and narrow, hard silicone that did not form to my face, and a forehead pad that was super irritating.  Next try was a Dreamwear nasal pillow.  Good in my opinion.  I tried my best to make it work, but it did not leak at all, and that made it too hard for me to exhale, so my inhale (respiratory rate) got too low, and set off the "low rate" alarm on the Evo.  The p10 seems to be a very good pillows mask from the reviews I have read here. 

DME RT gave me an older (2010) or so Quattro FX mask.  Has worked like a charm for me.  No irritating forehead thing.  Wide mask. Very soft and pliable cushion.  Has a small crevasse at the very top, so it does not put much pressure on my nose.  Seals pretty well.  I use this one every night now with just about no leaks. 

Next tried the Dreamwear hybrid full face mask.  Very cheap experiment.  Bought the hybrid frame and cushion and headstraps for around $50 or so total (and used the old plastic frame from the pillows mask).  Felt good and comfortable, but using OSCAR, it could not deliver pressure to me quick enough, and I saw many hypopneas and unidentified apneas (which I assume were CA's) very similar to your chart, Dani.  

I got an F & P Vitera last week. So far I have been impressed.  Very few to almost no leaks with very little tightness of the straps.  It is very soft and pliable cushion like the quattro fx, so it conforms to the features of my face well and stops leaks I have personally found.  Rollfit on the nose is nice just like the crevasse in the quattro fx.  Several people have reviewed the Vitera here, but the reviews of Crimson Nape, Sarcastic Dave, and Brazen convinced me to try it.  

I have bought several mask liners.  They have worked for me in stopping leaks (they fill in any gaps in the cushion).  Some people here have said they do not work and make leaks worse, but the very thin material ones work best I have found.  I piece of silk could make a great makeshift  leak stopper under the cushion in places that leak.  A silk handerchief, etc.  

I have a snuggle hose warmer also since the Evo has no heater.  I have not ever experienced any rainout yet either at about medium humidity.  

A last resort I used with the 1st mask was to cut out a piece of foam from a mattress topper, etc. that is about an inch thick or so.  I shaped it to put under the pressure points in the headgear, and that helped some (I could then tighten the straps tighter without much discomfort).  Any foam could work.  Softer foam worked better than hard foam.  

I also tried cpap gel (sold in a tube).  I personally found it not to work (and also be very cold and slimy).  A few people have reviewed it here.