SleepyRocky's Therapy Thread

[SleepyRocky]

Greetings,

I’d appreciate help with my therapy. I’ve been so impressed by the quality of help offered in others’ therapy threads. I’m reasonably well-informed on the physiology (MS in a biological field, former EMT), but have plenty to learn. I'm less skilled at using this forum!

For nearly 10 years my apnea was well-managed (AHI mean 1.3/hr). Last October to December, I was treated for tonsil cancer with radiation and chemo. Once I tapered off a steroid, I got rebound swelling, increasing my apnea to an average of 6.1/hr. I suspect this, cancer pain, tapering off of an opioid and gabapentin, and work/personal stressors created a spiral where my sleep quality fell apart. I am not taking any sleep aids.

I started on a new CPAP three nights ago, and thought I’d see what you good folks have to say as I get started on it. My AHI and SpO2 seem better already, but I'm confident therapy can be optimized further. I just used the settings I was using before 9-13 APAP, no EPR. I wonder about increasing the minimum and adding EPR? With the middle-of-the-night insomnia, I am concerned about increasing arousals with drastic changes, but am wanting to continue experimenting. 

I’ll attach a night of data, plus a one year overview report so you can see the dramatic changes.

Thanks so much for any thoughts or questions!

Rocky

[attachment=77660][attachment=77661]
_____

I know medical advice is prohibited and I am not seeking it. But a quick summary of my health journey might be useful.

1987-2014       Collegiate wrestler, high altitude mountaineer, 14 x 100-mile trail races, lead expeditions globally
2015               Atrial Fibrillation and Obstructive Sleep Apnea diagnoses (In study AHI 11/hr, 42/hr in REM)
                      Started on PRS1 Remstar CPAP, symptoms improved significantly
2018               1st & 2nd ablations for AFib—pulmonary vein stenosis complication
2023               3rd ablation--full occluded left pulmonary veins (on one lung, SOB up one flight of stairs)
                      Started on Dreamstation 1 from recall
Jan 2024         Pulmonary veins stented at Cleveland Clinic (a miracle to jog again!) I was able to hike 25 miles in 2 days last July.
                      I’m still on a few heart meds, but with stable doses for a couple years.
Aug-Dec 2024  Tonsil cancer diagnosed, 4 lymph nodes involved -- 33 radiation and 7 chemo sessions
                      Side effects included significant radiation burns on neck, tongue, and tonsil, now mostly healed aside from swelling; muscle loss
                      On soft diet for a month
Jan-Mar 2025  Steroid, opioid, Gabapentin, Tylenol, laxative tapers; rebound swelling, cancer pain, cancer-related fatigue
                      6-yr AHI 1.3 abruptly increased to 6.1, fragmented “Sleep maintenance insomnia” since 1/10/25
4 Apr 2025      Started on ResMed Airsense 11 Autoset

[SleepyRocky]

Hi,

Does anyone have advice about pressures? EPR? I'm not sure if I should increase the low end? High end? Add EPR? How do they interact?

Attached are screenshots of a couple more nights, as well as a zoom in on a clear airway and hypopnea from last night. I've seen discussion on the shape of waveforms, but don't really understand the meaning of various shapes. I think these are not ideally shaped?

Any thoughts, even speculation, are very welcome!

Thanks,

Rocky

[attachment=77739][attachment=77740][attachment=77741]

[Deborah K.]

Your median pressure is above 11, so I suggest you raise your start pressure to 11.  You are also bumping against your top pressure, so I suggest you raise that to 15.

Your flow limits are very high, so I suggest you turn EPR on full-time and set it to 3.

I think both of those will improve your sleep.

[jdougc]

Do you sleep on your side?
You have positional apnea, clusters of events when you tuck your chin and cut off your airway, like kinking a garden hose.
No increase in pressure will open it.
You might need a soft cervical collar.
Leave your minimum pressure as it is, as well as your maximum. You will get leaks and other issues if the pressure raises .
Until you get the collar use a pillow,  hold it close to your chin to stop it from tucking to your chest .
You may get CAs with the EPR that you need. They should lessen over time.

[SleepyRocky]

Deborah and Doug--

Thanks so much for your responses!

I can't afford to make drastic changes the next two nights due to my daytime activities, so I think I'll take two baby steps tonight, increasing my minimum to 9.6 (a number I almost never got below on this machine) and set EPR full-time to 1. Does that mean it will always be 10.6 or greater on inhalation, or that it might drop to 8.6 on exhalation?

I believe I do have positional apnea, and I spend most of my time on my back. I use a cervical pillow, which works well most of the time, unless I get out of the divot I carved out of the pillow for my head. Sliding out of the divot was a problem when we experimented with tilting the bed 9 cm (4") for a few weeks, to try to reduce mild neck lymphedema. I'd slide down out of the head divot and chin tuck on the lip of the pillow. Maybe I do that randomly as I shift from side sleeping to back sleeping now on the flat bed.

I recently purchased a re-leaf cervical collar and will try that again Friday night. I could not make it more than a couple hours a week or so ago, but might be able to grow used to it. Maybe the answer in the long run will be a soft cervical collar with a thin traditional pillow?

I'll let you know how it goes. Thanks again! 

Rocky

[jdougc]

Both the Positional apnea and your flow limits are driving your pressure to the max.
Increasing your minimum pressure will have little effect dealing with this issue.

Consider increasing EPR, that is the tool to fight flow limits. 
You may see you are less time at your maximum pressure if your flow limits decrease and you reduce your Positional apnea

A soft cervical collar would help, not sure what re-leaf cervical collar you have.

A thin pillow would also help.

[SleepyRocky]

Thanks for your thoughts.

Last night was my first night with the Releaf Caldara (large) soft cervical collar. This was the 3rd night with full-time EPR 1. AHI was up a little (mostly adding CA) and flow limitations down a little.

I'm not sure if the collar was too loose or too tight. I understand that can be a fine balance.

How long does it take for the CAs to disappear after increasing EPR? I want to increase it further, but am thinking I should wait until the CAs disappear. Is the mechanism causing CAs just blowing off more CO2 than I'm used to due to lower EPAP?

Thanks!

Rocky

   
   

[jdougc]

How did you feel when you woke up?
Did you stay in bed a bit after you woke up around 6:20 or so?

Consider a wedge pillow or an adjustable bed to elevate your head if you are going to stay on your back.
You may need a flatter pillow also to help minimize the clusters of position apnea still there.

Since pressure increases won't clear your airway during these positional events, consider lowering your maximum pressure to 11.cm near your median. You had some of your best sleep around or below that pressure. 
That lower pressure swings may help with minimizing arousals and keep your breathing less ragged
.
Can you post a zoom in chart of after the 3rd event at 0:40 and around 4:40 when your breath got ragged?

[SleepyRocky]

I felt pretty good when I woke, though I am sleep deprived from an insomnia treatment called time-in-bed-restriction. I'll explain that in a future post. I think I actually woke in the 5:20 to 5:50 range and eventually fell back asleep. Would you call some of the events around and after that sleep-wake junk?

I've tried a wedge pillow and elevating the bed on a 4"x4". Both cause me to slide and wake, and my supportive wife slid as well for the 4x4! I may try again someday, but want to try other things first. The reason for trying it was tonsil cancer-related edema (which should resolve over a year) and lymphedema (which I will likely have to live with). Both are contributing to apnea.

I'll share a pic of the cervical pillow as well.

I like the idea of reducing the max pressure. I might go for IPAP 12 cm max first. I'm hesitant to make big changes due to the insomnia / time-in-bed-restriction and resultant fatigue.

Zoomed in graphs coming up! Is there a normal amout of zoom? 5 mins?

Thanks!

[jdougc]

3 minute zooms seem to work the best, good details.
Use a pillow under your knees to stop the sliding.