[Treatment] ASV settings for treatment of complex sleep apnea

[SarcasticDave94]

Maybe you should try low settings like my new doc prescribed on the ASV. I'm just trying to suggest something for you to get therapy that's comfortable and effective. It sounds like you've not gotten that yet.

EPAP 4-15 PS 0-10 ASVAuto mode

[Geer1]

Just posting a bit about my personal situation as a bit of an idea of how things may be more than they appear and how I believe my sleep disordered breathing is a symptom rather than the issue.

Over the past two years I have continued to dive deeper and deeper trying to understand what my health problem may be. Sleep apnea/poor sleep quality seemed like the most obvious cause for a while and my doctors main concern as well. I was scheduled for a PSG but never able to get it because of covid (still waiting). Inability to get this test set me on a different path, seeing a naturopath, treating digestive/gut symptoms and continuing to look in other areas.

Some of my symptoms include dry eyes, minor inflammation of eyelids almost like allergies but with no known allergies, sensation of pressure/ear fullness, dry nose, nasal congestion (non allergic rhinitis), dry mouth, geographic tongue, black hairy tongue (although mine isn't black), inflammation of pharynx that ENT believed to be caused by LPR, sleep "apnea" consisting of hypopneas and flow restrictions, digestive problems (tenderness, constipation, food sensitivities etc), neurological complaints (depression, anxiety, brain fog). A lot of the typical complaints that plague many chronically sick individuals but a few extras as well and enough physical symptoms to make me (if not my doctors) fairly sure there is something else at play.

About a year ago I had wondered if this may be related to an autoimmune disease called Sjogren's syndrome. My ENT tested me for the antibodies at that time (and I had also been tested for ANA by another doctor) but antibodies were negative so he claimed there was no chance (although antibodies only develop in 70% of patients and often not until years into the disease). During this past year almost all of the above symptoms have become worse other than some relief I have found in treating some of the symptoms (removing dairy and changing diet as well as treating SIBO made biggest change). Last spring when I was at my worst I was feeling the dryness, this summer it didn't bother me as bad and in the fall I was on the road in a more humid location. Upon returning to my home and dry winter conditions I have felt all my symptoms flaring up and it made me really start to question Sjogren's again. Curiously I have been able to notice a rhythm in my CPAP data showing decreased tidal volume and ventilation last spring that improved through the summer and is now worsening again (imo related to dryness). The past two weeks I talked doctors into performing two tests to try and confirm my thoughts on Sjogrens. One was an eye test, optometrist confirmed dry eyes with a Schirmer test (although only one bordering on what is considering Sjogren's level and the other only a bit drier than normal) as well as the eyelid inflammation which he gave me corticosteroids to treat which has provided some relief. The other test was an ultrasound of my lymph nodes and salivary glands. I don't know the full results as the tech didn't tell me anything and doctor has only told me that they found at least one cyst in my left parotid gland, he wasn't sure what a cyst may mean so he has referred me back to ENT. Parotid cysts are a potential symptom of Sjogren's, especially if there are multiple of them or if they are bilateral, I will have to push doctor for more information about the test results and finally inform him that I believe I have Sjogrens (have been hesitating as I knew it would be useless without more data to support especially considering the previous negative antibody test). 

It will probably still take me months to try and get a diagnosis. I imagine I may have to get another MRI specific to salivary glands and probably won't get a definitive answer until I am able to get a doctor to perform a lip biopsy or they biopsy/surgically remove parotid cyst. I personally believe I have found the source of my health but only time will tell if I am correct.

I don't know what all other symptoms you have but like I say keep digging. I got tangled up on the sleep apnea/sleep side of things for a good half a year and may have not dug into digestive or Sjogren's stuff as much as I have if it weren't for covid cancelling my sleep study.

[JoeyWallaby]

I think LPR has been affecting my treatment
https://jamiekoufman.com/how-to-cure-sle...flux-gerd/

Gaviscon has been helping LPR but a dose only lasts 1-2 hours. Changing diet and PPI hasn’t done much.


Bruxism is bad, I go through bruxism guards fast.

[JoeyWallaby]

Used ASV last night for the first time in a while. Slept worse than without it. Had a lot of aerophagia, which I hate. 

I think I need a lower EPAP, higher PS and lower the maximum IPAP.

I doubt the nasal congestion helps, maybe I should try fexofenadine before bed for nasal congestion and a PPI before bed for silent reflux? I've been taking gaviscon before bed but it only works for 1-2 hours.

[Sleeprider]

I think your PS min it too high, and you can drop back EPAP min. Why not EPAP min 5.0,EPAP max 6.0, PS min 3.0 PS Max 12.0?

[RayBee]

I too had the "not fun" aerophagia problems with my ASV. I did a lot of refined tweaking of the settings and determined that when IPAP gets to 17+ aerophagia becomes a problem for me. So you will see from the sidebar that my IPAP Max is now 16.4. That seems to be a good balance for very occasional aerophagia but not overwhelmingly so. I figure if I keep waking up because of discomfort, well, I'm not sleeping. So, what's the point?

My IPAP Low is now 10.4. Again, doing a lot of refined tweaking, I find this is the level where I don't feel starved for air whenever I inhale. If I feel starved for air, distressed, and can't fall asleep, again - what's the point if I'm not sleeping?

So, I have a fairly narrow range of only 6 points to play with. I can bump my IPAP Max around this 6 point range, but these settings on the sidebar seem to be the best for me for now.

[JoeyWallaby]

Used ASV for first time in months, feeling not too bad today. Actually woke up with erection which is a good sign lol

Aerophagia was surprisingly not very bad. Breathing patterns seems better when machines increases PS?

Any comments on settings or data?

[RayBee]

I'm jealous...
Well, for the 9 hours of solid sleep, that is.

[JoeyWallaby]

Woke up today just feeling like death terrible... nose all blocked up, tired, painful

I hate how the maximum I can set the min ps to is 6!!

Breathing is BEAUTIFUL on the chart with EPAP 4-5 and PS 8-9, then the ASV algorithm goes "ok breathing is stabilized, drop down to min epap and min ps", back to bad breathing, then it goes back up... repeat repeat repeat!





This is what I'm talking about with the pressure increases/drops

[Sleeprider]

This limitation for PS min is the same on the Aircurve 10 series. Philips Auto SV allows IPAP min to be EPAP plus up to maximum IPAP of machine, so no limits but pressure delivery is different. Your settings and preference for sustained high pressure support are more typical of ST or ST-A. You have consistently had very good AHI and respiratory statistics on ASV and yet you have a consistently high pressure support, however it appears you mainly spontaneously breathe. I don't recall all the history, but I think you had a fairly low diagnostic AHI, and began therapy in large part to address flow limitation and UARS. Correct me if I'm wrong. Did you ever try using simple bilevel therapy like VPAP auto before starting ASV?