Pokey49 - Therapy Thread

[Pokey49]

I’m going regard last night as a total bust. It’s so busted up I don’t it’s a useful example for doing any fine tuning   Hopefully tonight will have better results to work with.

[SarcasticDave94]

That should be rather easy as well, the Trigger that is. Default is Medium, set to High if there's some CA in the line of treatment emergent, then to Very High if High didn't work.

[Pokey49]

Last nights OSCAR is below. Another ragged night. At approximately at 1:15am is when I woke up and started fighting with the F40.It was leaking badly. I adjusted straps to no avail and yanked it off finally. At approximately 2:10am is when the recording stars with the P10. I'm done with the F40. I've given it a good try, but it just doesn't work for me. But my bigger concern is that even with the P10 OSCAR indicates I had a poor night. The CAs are still present despite the BIPAP set at very high trigger. And Im still waking up feeling a bit air starved with either mask

SleepRider, Sarcastic Dave any suggestions?

To share a very personal thing, I think what's going on with my sleep may be beyond the scope of PAP therapy as some of you have suggested. I'm tapering off a low dose of  antidepressant that my doctor put me on to "help me sleep"??? Right!!   and he agrees he should have never put me on it. Problem is you can't just stop it. It must be tapered VERY  SLOWLY. Im talking quite some time to get off it. I wont bore you with all the details of that process. SO I have to figure out the best recourse going forward. My biggest concern is the CAs, are they truly CAs. One of the CAs indicates I didnt breathe for 19 seconds if I am reading correctly. All I can say is my head feels really weird when I wake up and I feel pretty tough in general. 

Any advice appreciated. thanks

[jdougc]

You were probably not asleep around 2:15, so ignore those CAs and the same at the end of your sleep session, your were transitioning from sleeping to being awake.
Did you wake up exhausted and with a headache?

[SarcasticDave94]

Even if the CA were the biggest issue, by themselves your AHI would be 2.64, below 5 AHI the threshold of treated.

But some of the CA can be cancelled off the count in the 2.64 AHI because they're looking to be in the sleep wake junk category.

Ahead of CA as real issues, the leaks and frequent interrupted therapy. The leaks on this chart overall were not terrible, 95% shows 8.40 leaks. However leaks are probably adding to the disruptive aspect, meaning you might need to address them more due to your subjective complaint versus the objective numbers. If the mask isn't working, go with yet another size cushion, or change model and/or brand.

Then too, you'll need to really get some idea why your sleep is disrupted and work to fix that. Some is likely the mask leaks, some might be negative effects of the medication, but is there anything else?

The 19 second Apnea sounds really bad, but I had a 90 second Apnea during a sleep study. Neither is great. I do think you're still getting pulled into a data trap, and worrying over things that might not really have a negative effect on you. Have you been successful at subjectively placing some assessment on your therapy and sleep before looking at any data? Really think on this, disregard all data on last night. How bad was it? Explain how it was bad while not using any data. Leaks, events, numbers aren't allowed to help answer this time. Tell us how the sleep session was last night, again use zero data. Just what you felt.

[super7pilot]

I agree with Dave. Clear Airways sound worse than they are.
Look at it this way. Do you recall ever seeing a person getting ready to go under water and they are deep breathing before holding their breath?  They were blowing off Co2 so the bodies "drive" to breathe is tamped down.

The very same thing happens with the majority of CA's in pap therapy. They are from taking a deep breath or from sleep wake junk.  You seem to keep thinking they are Central Apnea's.

One way to dispel your fear of central apnea is to zoom in on each CA event.

Here is a CA I had last night. Notice that the breath before the big one had a flow of +15/-32 then the breath that caused the CA was +61/-82. The inhalation increase between those two breaths was 300% exhale was 156% more. So I blew off a bunch of Co2 and my body said "take a break" and it did for 20 seconds. But it was NOT a harmful apnea. It was in fact a low Co2 Clear Airway, not a Central Apnea.

   

[ejbpesca]

I have a leaky F40 cushion currently. I am having to use an over a month old cushion due to the wrong brand/model being shipped to me by the DME...again.  I can feel air moving out the sides of the cushion as I breathe which is irritating.  To prevent this, I have to tighten the straps more than what is comfortable.  Any mask I've used has done the same thing by the fourth week of use.  

I get OSCAR reports similar to yours in numbers.  I have found it is not the numbers that tell me how well I slept.  I know right away upon waking how well sleep went by the way I feel.  My AHI scores do not corelate with sleep quality.  I have had to accept that most of my AHIs will be from 2.50 to 4.00 and leaks happen.  I know the frustration of reading one OSCAR after another that is not as stellar results as I would like to see.   When I see consistent < 1.00 AHI results from others here I think that's what I should get too but rarely do.  I recently had an uptick in CAs maybe due to turning on EPR once again in an attempt to get Flow Limitations down.  I don't need EPR for comfort so if CAs persist, off again it will go and up will rise the FLs.

I can empathize with your medication withdrawal and how bad/bizarre one can feel during cessation.  I recall counting tiny pellets from an opened capsule over a period of six weeks or more.  The experience would have not been a good time to have attempted to become accepting of PAP therapy mask.

The only remedy I've read about for air starved feeling is a bit of pressure increase.  I recall feeling panicky as I adapted to a mask and frequently yanking it off for relief.  19 years later and I still yank it off on occasion.  

Here's hoping you find a mask that is tolerable then stick with it for a while.  Continual switching between them may be counterproductive in finding the one you can tolerate.

[Pokey49]

JDoug & SarcasticDave. How did I feel you ask without looking at data. Pretty tough!
I would describe it generally like coming out of a coma after being hit by a truck: very tired, slightly air starved, mild headache, foggy headed, aching all over, stiff, unsteady on my feet when I get up to go to the bathroom.
My new DME “gave me” a P30i to try which I will try tonight.
If you see no adjustments to be made to my VAuto I may not even look at Oscar for a few days and see how it goes. It is to easy to get wrapped up in the #s

[Pokey49]

I am not posting OSCAR today as I had another crummy night. I don't think its due to PAP therapy but rather due to the medication I am tapering off of. Tapering off an AD has to be done very gradually and judiciously. I may have reduced the dose to fast. I should have never let the doc put me on the stuff in the first place, but here I am

I saw a new sleep medicine provider yesterday. I was very impressed with her. She asked lots of questions about my situation, looked at what data she had from my DME, was interested in the data I shared with her & allowed me to share my thoughts and theories and seemed very engaged in trying to help figure out how to go about making things better. She had never heard of APNEA BOARD or OSCAR and wanted to know more thinking perhaps they both could be helpful to her other patients. Refreshing!! In short, she was not a "know it all" or "my way or the highway" kind of provider like I have experienced in the past.

[super7pilot]

That's good news about your Dr. listening instead of preaching to you.

I'm so thankful that I have been able to say no to those type of drugs. Seems anymore that if you suffer a hangnail. You are handed an AD drug.