Newly diagnosed severe CSA & OSA (AHI=108) seek advice

[Liteheart1]

Again thanks to all of you. Nice to read the thoughtful and nuanced discussion of what setting might or might not have impact. While my (initial) primary concern is with my own treatment as well as my subjective evaluation of results, I am also within limits happy to be an informed guiena pig for setting changes if it provides a greater understanding to you who are sophisticated in reading the charts and suggesting tweaks to settings. Once I have more exp. and more data, and if AHI continues to stay this pleasingly low then even though the suggested change to ASVaauto might have minimal impact if you all are curious and if it has implications for your understanding that could be applied to others, then I'd be fine with doing that experiment - but all of that is a bit off in the future.

I guess I'd ask a more generic ? here and that is how would you state the goal(s) of effective treatment? What numbers and patterns are you looking for? I expect that there are parameters that might have a positive impact on certain events but be neutral or negative as regards other things including patient acceptance or comfort. Can you point to a thread or wiki with some info on this? As a basic, with all other things being equal is having lower pressure to get the same result pattern "good"? I guess for me naively I think it is perhaps "good" that my ASV titration study and therefore sleep DR Rx has me at a pretty low pressure of 5 and that seems quite effective - at the very least it is probably making adjustment to therapy easier than if the "needed" pressure were 12. I do understand that my actual pressure that has been needed at some moments is far > 5 and I expect that some of my slight discomfort during last night was the times of higher pressure.

Finally, if it would be useful would getting the actual minute by minute raw data from my two sleep studies be helpful? My sleep DR said I could just bring in a thumb drive and ask the front desk to give it to me. But they didn't know how to handle that and said it would have to be requested elsewhere in the bureaucracy and probably with a note from Dr. Usatii. I dropped the request at that point as I didn't want to ask more of her until I knew for sure that it would be of great value to have it in my own hands. Not sure what file format options there might be ... what file types can be brought into OSCAR and displayed via it?

[SarcasticDave94]

Still on same page with you Sleeprider. I just didn't get into the details. This is one where I just jumped to "let's go ASV Auto".

Liteheart1, congrats on getting the ASV therapy started. I'll wait to see what trends you develop during use. Prepare for apnea therapy to be very good and drastically better than what you started with. Post OSCAR data as best as you can regarding suggested chart organization. Keep in mind to tell us concerns or complaints with the question "How do you feel?" in mind. Best to your success.

[Dormeo]

"I guess I'd ask a more generic ? here and that is how would you state the goal(s) of effective treatment? What numbers and patterns are you looking for? I expect that there are parameters that might have a positive impact on certain events but be neutral or negative as regards other things including patient acceptance or comfort. Can you point to a thread or wiki with some info on this? As a basic, with all other things being equal is having lower pressure to get the same result pattern "good"? I guess for me naively I think it is perhaps "good" that my ASV titration study and therefore sleep DR Rx has me at a pretty low pressure of 5 and that seems quite effective - at the very least it is probably making adjustment to therapy easier than if the "needed" pressure were 12. I do understand that my actual pressure that has been needed at some moments is far > 5 and I expect that some of my slight discomfort during last night was the times of higher pressure."

Great question. At the top of my list of goals is to eliminate the serious long-term health risks caused by untreated apnea, e.g., high blood pressure, heart disease, diabetes, stroke, and dementia. I believe these risks are created by repeated O2 desaturations and surges of adrenalin, as well as increased levels of general inflammation, and then the cascade of conditions that result from those. As far as I know, if your AHI is low, then in the absence of other health problems, your are probably doing a very good job of eliminating those added risks.

Just about tied for first is to eliminate the day-to-day and short-term effects of the poor sleep that apnea usually causes. By "poor," I mean sleep that does not progress normally through the stages of sleep, that does not have long enough periods of deep and REM sleep, and that does not last long enough taken in toto. The bad effects are myriad: cognitive decline, memory loss, irritability, depression, and decline in sexual desire; reflux, headache, strong need for frequent naps, and, for some, a tendency to fall asleep while driving or trouble keeping a job.

The numbers can be good and yet the sleep poor. I think it's very common to have poor sleep in the initial phases of apnea treatment, because the use of the machine and mask is so disruptive and novel. Over time, that gets better for most people if they stick with it, and most people will see improvements in cognition, mood, memory, and the like. That's where nice low pressures come in; as you say, it's generally much easier to adapt to treatment when the pressures that work are low than it is when they have to be high.

People without apnea can have sleep problems, e.g., restless leg syndrome, onset insomnia, or arousals due to pain. And people with apnea can -- independently of the apnea -- have those same sleep problems. Not all sleep problems are problems of disordered breathing. (For that matter, not all the depression, cognitive decline, etc., that people with apnea experience is due to their apnea.)

What makes life complicated for some people is that their problems of disordered breathing are quite subtle and may respond to adjustments in treatment with the machine. It can be hard to know when this is the case and when the root of the continued day-time problems lie elsewhere, and the adjustments can take a lot of trial and error.

I'd be curious to know whether this corresponds to your sense of things.

[Liteheart1]

@Dormeo I'd say I'm pretty much in alignment with what you wrote and some I had not stated. The key is to have sleep be the restorative balance to our day time activity and to reduce the (causative or correlational impact of apnea) risk of other disease propensities. Through that lens aiming for lower pressures or some other stat specific to apnea treatment could be missing the bigger picture. Having sleep that progresses in a more optimal manner through the sleep stages is how we are designed to function biologically and is the essence goal of apnea treatment. Since my apnea is primarily central rather than OSA and since I have been primarily asymptomatic, I don't have great markers and feedback on what impact my sleep has had.
You also very appropriately point out the oxygen desaturations and the arousals as being deleterious. Fortunately the amount of my oxygen desats in sleep study was a concern yet relatively mild. One of the things I will be asking my sleep DR is the difference in my untreated AHI in 1st study of about 10 and that in 2nd study it started at only AHI 31. I never take a sleep aide but at her suggestion I did so the night of the 2nd study as I wanted to sleep more easily and since she felt it'd have no impact on the titration I took Zolpidem. My ? to her will be did that drug or something else contribute to such a change from being at the far end of the chart for 1st study with AHI then in 2nd study being just barely in the severe range. I had thought (perhaps mistakenly) that 2 sleep studies within 8 weeks of each other might show fairly similar AHI. Other stats were much more similar e.g. oxygen lowest and avg level. Anyway it is interesting having a window into one's sleep pattern.

[Dreaming1]

You could try mouth tape to keep the mouth closed or specifically Somnifix. Both work well.

[Liteheart1]

1.     Since answers might be of value to others, should this become a separate thread? trying to understand mask leaks, how to diagnose/detect where the leak is, what is causing it, how to find a solution.
   
2. Info: Will post OSCAR later, but after a good start on treatment, 3rd and 4th nights show significant (last night 62% large leak) and more frequent and larger mask leaks than on 1st night and even on 1st night some in looking at OSCAR of that suggested trying to reduce mask leaks. I have read wiki on both masks, masks leaks, and mouth beathing (and it is likely that I have at least some mouth breathing). WISP nasal mask large; only mask I have tried. I am 150#, 5' 10" mostly side sleeper and face is fairly average without any known asymmetry etc. so expect my mask leaks and solutions will be typical. During recent titration study mask leaks were minimal but I also wore an under the chin chinstrap and except for briefly during 1st night have not yet at home done the chinstrap part. The dry mouth and throat that I had experienced is greatly reduced as I changed Climate to manual and raised humidity from 78 degrees and 4 which DME had set to humidity at 6; think I might actually prefer 5. I do not exp. air coming up toward my eyes. I do exp. a significant flow of air from the mask vent - is that normal>
   
3. My approach: Yesterday I practiced in afternoon and had very slightly loosened the upper straps on WISP. It still took some force with hand to pull mask out of contact with face. When practicing (not asleep) I feel around the edge of mask with moistened finger to detect any air flow; I also apply slight sideward pressure to see if that creates a leak. None of that creates a leak. In all of my sessions including with the slightly loosened upper straps within the first minute I experience a slight pressure change inside of ears which I have gotten used. Is that ear pressure typical and does it indicate a good mask seal? 
   When I lay on my side which is how I begin night and also wake that way, I have cheek at end of pillow so that much of the mask is out in the air. I do not think that I bury my head in pillow which would dislodge mask. I have the air hose hanging from the head board and don't think that it is dislodging the mask while I am asleep, but won't rule that out.
   
4. I had read that many new users try to solve mask leaks by tightening straps but opposite is what might be needed. Some describe that mask should float on face but have uniform contact and then the air pressure will suck the silicone of the mask to conform to the face and make the seal. I would say that the amount of force I have to use to feel like I have just started to barely lift the mask away from face is the amount of force one needs to exert to pick up 4 ball point pens from a desk. Before I had lossened the strap yesterday while I had not been waking up with marks on face or irritation/denting at bridge of nose, I did feel some pressure on one side of my nose even though I was sure that the nose piece was on symmetrically.
   
5. Mouth breathing: Tentatively postponing the chin strap as that feels a bit too restrictive and yet another thing to get used to. However if advised will add chin strap immediately. The dry mouth and even dry throat has greatly improved in the 4 nights and I do not wake up with dry mouth. When OSCAR indicate mask leaks are those only caused by the mask area, OR if there is mouth open is the later also part of the Mask Leak data report?
   
6. Last night when I got up to go to bathroom I checked SD card via OSCAR and was a bit discouraged. Decided to just go back to sleep without mask and woke up this morning more refreshed than on the prior mornings, but I know that I have to treat apnea and it seems key step is solving the mask leaks.
   
   As always thanks for the experienced advice/tips.
   

[Liteheart1]

    Attached is expanded portion of last night to give more detail. Photos of how mask looks without hose. Perhaps this will help with offering advice.

[Liteheart1]

After a bit of wrestling with technology and DME, I'm making some progress. Feeling similar to before therapy which means fairly well rested and this in spite of the very interrupted sleep pattern. My primary focus since last OSCAR rpt has been on reducing mask leaks and having mask feel comfortable and relieving the dry nose and dry mouth. Last night I changed the WISP mouth piece to XL from L, and that seems in many ways to fit better and at very least is more comfortable as there is more room just below my nostrils. The mask now comes to just above my upper lip and since I am trying to train myself away from mouth breathing the new lower mask position I think helps me focus on keeping mouth shut. I am still waiting on trying chin strap again until I am more comfortable with the other elements of therapy.

OSCAR info: 1st session I was sleeping on side which is my preference. Not sure why I woke up after only an hour, but dozed off again after removing mask and stopping session. 2nd session is again on side ending in bathroom break and time with my cats. 3rd session was on my back which is atypical for me, but in part was curious to see how mask would do in that position. By end of 3rd session and for the first time I was getting rainout and I believe the moisture is woke me up; took off mask and slept again for perhaps a total of 7 hours total sleep which is less than typical for me.

1) Dealing with rainout: DME had set humidity at 4 but had things set to auto; hose temp of 78. I sleep in room with temp of 64. Per forum suggestion for dry mouth and throat I had moved things to manual and only changed humidity to 5 and then 6 for last night. I plan on backing down to level 5 tonight. Not sure how severe the rainout was but there were definitely droplets of water at spots along the hose and especially evident at the connector to mask. For prior several nights I had hose running from night stand up to head boards and then coming down. For tonight I plan to run hose much more horizontally from ASV to mask with the excess between pillow and headboard (this because I believe I had read that unless you need elevated hose for hose management that is better to minimize elevation changes in the hose). The dry mouth and throat has been better than the first 2 nights of therapy and some of that is simply tolerating the dryness as a part of a new sleep pattern. I would be fine with the air coming to the mask being a bit cooler or a bit warmer if that would allow more humidity without triggering rainout - will follow your suggestions on this.

2) Mask fit I have done some practice sessions during the daytime, and have used the ResMed Mask Fit function. In order to get a frowning face I really need to lift a corner of the mask significantly so believe that the mask fit test has a high threshold. Since while asleep I do have some episodes of high mask leak are those then more likely to be times of mouth breathing?

3) In OSCAR app how do the session time little rectangles at the bottom of the left column work? Or point me to proper wiki page. It seems to be a toggle to change the display time frame, but I am not clear on the pattern. Also to the right of that there is an LL and at far right Event Flags with arrow choices. How might I use those to change display to better understand the data? I believe the screen capture I posted gives on the left col the overall stats for all 3 sessions which shows AHI of 0.66; large leak at 2.61% and total time of 4:33. Of course in session 3 the large leak for just that session was 7.28% and AHI of 1.84. What might be a good/reasonable target goal for % leaks? Should I just attach OSCAR image OR also insert into the post itself? Seems like the wiki implies insert into post.

As always thanks for your time and input.
   

[SarcasticDave94]

1. Rainout: as you found out, you have the setting of auto or manual, then the hose temp and humidity. You can bump the temp and humidity up or down as needed to add moisture and keeping incoming air at your preference at incoming temperature. You may want to get a hose cover to add insulation if you can't get the settings to give good results.

2. Mask fit is probably not very useful in my opinion. Base your leaks on OSCAR data and if you're getting disturbances from leaks.

3. Sessions are toggled on/off as you're thinking. Suppose you had a 2 session night, and only wanted to look at number 2. Just turn off the first session and voila, there's only session 2, or vise versa. Click On for all sessions and there's your whole night. LL is large leak I'm thinking. The higher the large leak, the more likely therapy is not helpful. ResMed machines have large leak start at 24 as default.

[Dormeo]

The spiky-looking leaks are more likely to be your mask moving and making a leak. The plateau-like leaks are more likely to be mouth leaks.

As Dave suggests, try a hose cover. It provides me with the insulation I need. In fact, I use an 8 foot cover on a 6 foot hose and scrunch it up, but that’s probably overkill.