[CPAP] Newbie with CSAs, struggling with CPAP therapy

[Llort]

Jay51,

Great mask reviews!  I'm hoping I can make the current masks (ResMed F30 and F30i) work, because I feel like I'm spending so much money already.  It's all relative, I guess (way less than a sleep study!).  

I'm going to dig through my fabric/rag stash and cut up some mask liners to try out today.  I've even got a torn silk shirt to use for material.  Thanks for the inspiration!

~Dani

[RainbowFish]

Welcome to the forum!

I have a very similar situation as you (High altitude, obstructive and then central apnea with CPAP, low tidal volume, and some POTs) and ended up on a BiPAP with very similar settings as my original APAP, but with the trigger sensitivity set to High to address the centrals (This setting is not available on an APAP).

Like you, a higher EPAP does not worsen my centrals. Cranking of my EPAP to 8-ish stents the airway and improves oxygenation enough for me to get off O2, but the tradeoff is some aerophagia (bloating). Also, I would advise turning off the ramp and see if it feels like there is less resistance on the inhale with the higher pressure from the start.

The Wellue O2Ring is extremely helpful in assessing how you are doing, as, for me, Oscar can look good even as the O2 drops. I would for sure get supplemental O2 if you can, as you may well need it, if only until you find your sweet spot. Supplemental O2 will itself decrease your centrals some. I still use O2 if I travel to a higher altitude - Respironics makes a very nice portable concentrator with continuous flow - but your insurance likely will not cover a portable's added expense (sigh) see my cabin power requirements thread for a supplier of used units.

Getting leaks plugged is key. What made the most difference for me with the F30i was to get a small head gear even though I use a medium mask. Also, be aware that ResMed makes a small-wide that does not come in the standard kit.

Hang in there!

[Llort]

Thank you for your reply, RainbowFish!

It's cool to be able to connect to someone with a similar experience.  I'm glad you mentioned the different headgear vs. mask size - I was set up with small frame and small mask, but I think I might fit a medium mask.  Your post prompted me to look in my starter pack bag and find the medium cushion - I'll try that tonight.  Thanks for the encouragement, too.  I'm going to look up your cabin power requirements thread.  I know my husband is interested in getting a portable unit, so we could go camping again.  

I made a mask liner out of a glasses cleaning cloth.  I still had leaks as soon as I rolled onto my side, but no large leaks, so that may be an improvement (I was only sleeping with the CPAP for 2 1/2 hours, though).  

The big experiment last night was sleeping with no CPAP, but 2L oxygen via nasal cannula, and checking the results with the Well O2 Ring.  On oxygen alone for 8 hours, my oxygen sats ranged from 96-99% (pulse 55-98 bpm).  CPAP on room air previous night: O2 was 83-98%, pulse 51-93 bpm.  CPAP on room air this morning: O2 91-98%, pulse 51-90 bpm.  So oxygen supplementation led to higher sats (expected) but also higher pulse (unexpected).  I feel a lot better than usual this morning.  I'm going to share this with the sleep specialist.  

~Dani

[RainbowFish]

I wanted to add that I also use Polartec strap covers. I got them to get rid of strap lines, but they also stabilize the mask and keep the side air-feeds from whistling/collapsing.

I was looking at your original study. Even though it is read as obstructive, it looks like more of the events were central. But maybe the hypopneas are obstructive and we just cannot see the raw data? Or maybe you were already on a CPAP? With my original before-CPAP study, everything was obstructive, and the CPAP uncovered the central component.

[Llort]

I was on a CPAP for the sleep lab study, but no CPAP for the overnight oximetry or home sleep apnea test.  I suspect I had CAs before the CPAP.  

I switched to the medium cushion, had no large leaks, and had my best night in a week, with an AHI of 7.45, and SpO2 at or above 89% all night.  Fingers crossed that this will do the trick!

I think maybe I'll try making my own strap covers out of fleece.  It does seem like they'd help cushion the frame while I'm side sleeping.  As it is now, I'm sometimes holding the mask in place as I sleep.  I can use some stability.  

~Dani

[RainbowFish]

Sounds like progress!

[Llort]

After 5 weeks, I'm still struggling.  The medium mask cushion has helped with leaks, and my AHI is a little lower, but I'm still terribly symptomatic some mornings (POTS, muscle tremors and tics, nausea, brain fog, anxiety, tinnitus, air hunger...).  CAs and HAs continue.  Oxygen drops (down to 83%) continue.  

I did an overnight oximetry with CPAP Feb 17. I was told I was under 88% for over 5 minutes, so we can pursue supplemental oxygen.  I have a 20 min. phone appointment to discuss it with the nurse on March 7.  I was told the appointment will be about supplemental oxygen only and we can't talk about the CPAP for insurance purposes. 

Not content to wait any longer, I got an adapter and hooked up an oxygen concentrator (2L, then 1L) the last couple nights.  My O2s are a bit better (low 85%, med 97%), but my pulse goes up during my CAs anyway, and I don't think it's quality sleep.

At this point, with the CAs and HAs not resolving, I'm wondering if an ASV/BiPAP is a good option.  Is there a way to tell?  The DME supplier indicated I may have to have another study in the lab before I can get a BiPAP (at least with insurance).  I'm wondering if the nurse can write me a script so I can rent or buy a used machine and see if this is what I need. If you have one, how have you convinced the health care system and insurance that this is what you needed?  How long did it take to get one?  (I'm in the USA)

I'd be grateful if someone could look at my data and give some insight.  I'm attaching three day charts (Feb 27 on room air - felt terrible, Feb 28 on 2L oxygen details of CAs, Mar 1 on 1L oxygen, felt a little better).  I guess I most want to know - if this was your data, what would you try next?

Thanks,
~Dani

[Jay51]

Thank you for the post Dani. Since you are asking for opinions, I will give you mine.  A question 1st.  Do you attribute the inconsistent results simply to exacerbations of dysautonomia?  Or not?  

It does look like something other than the Airsense 11 Autoset could do a better job treating you.  

The chart you posted when you were on 2L of oxygen for part of the night (and the Autoset the other part) looked the best of all the charts you have posted so far.  

You have the choice of either playing the insurance game or self pay out of pocket.  I chose insurance because I finally saw that I would need a more sophisticated algorithm machine to successfully treat me.  

I don't envy having all the decisions that you need to make, but I hope that you make them correctly.  

[Sleeprider]

Your results clearly show that CPAP is not providing good efficacy due to excessive central apnea and hypopnea.  The recommended treatment for that is ASV.  I'll link to the Resmed Sleep Lab Titration Protocol so you can research how ASV works starting on page 28. https://document.resmed.com/en-us/docume...er_eng.pdf

It would help to know whether you had central apnea in your sleep study.  The way to get started with ASV is to discuss your continuing high AHI and low oxygen desaturation with CPAP and request a titration on bilevel positive air pressure with evaluation of ASV if central apnea remains present.  In this case the squeaky wheel gets the grease.  There is really no reason you should be using supplemental oxygen when your problem is central apnea and the ASV can resolve that and also any oxygen desaturation issues.

EDIT:  Never mind. I went back and your problem has always been central, not obstructive apnea. Your doctor should be expecting your call by now. With this diagnostic study and your continuing 100% central apnea with CPAP treatment, you either qualify for a new ASV or a new doctor.  Based on your diagnosis, you may need to change doctors because this guy wouldn't recognize central sleep apnea if it hit him over the head. Give him one more chance to redeem himself by scheduling ASV titration, and if he hesitates, find a pro that understands CSA. If your PCP is willing to review your results, he can order the titration test and take over your treatment. This sleep lab assembly line is not worth wasting your time.

[RainbowFish]

Your leaks look much better.  I still think your pressures are too low.  To me, it looks like your apneas are best when your present EPAP is maxed out - though we need a post of what your OSCAR looks like in the "good" parts of the night.  

I do better with more stable pressures over a narrow range (ramp off and minimum pressure where my original median was).  If you feel there is too much pressure on the exhale, you can increase the EPR, watching for more treatment emergent centrals (the EPR will facilitate the exhale and increase your tidal volume some, but at the expense of more potential hyperventilation oscillations).  You will need another study to get a fancier machine. But, with your impressive number of centrals, you may get a relatively easy approval.

For me, the magic change was to increase the trigger sensitivity using a BiPAP (drops the pressure with less of a breath effort).  Ironically, I ended up with pressure settings very similar to my old APAP but with a pressure drop to facilitate the inhale triggered with a wimpier breath.  If your events are truly central (no breath effort) only an ASV will work.