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Plmnb - the journey continues now with ST-A.
RE: Plmnb - the journey continues now with ST-A.
The way to spot a RERA and flow limitations goes like this..

1) If using a machine that reports Flow Limitation then look at that graph
..otherwise..

2) Some of the other graphs often look "weird" (spikey or messy or noisy) at the times that your worst car compactors are happening.
a) Respiratory effort may look noisy
b) The breathing flow rate may start to look small amplitude compared to other areas

3) Look at a 2 minute zoom and scan through the timeline looking for flat-tops and car-compactors.

Next... if the flow limitations are followed by deep heavy breathing then this probably/possibly represents an arousal or a rise in sleep-architecture sleep-level.
So mentally you'd score that as a RERA and keep looking.

I can't help with the data transfer stuff because I don't speak Apple and I have no idea what file-sharing mechanism you two are using.
However, if you know how to transfer a folder from your Apple to the shared link you guys are using then just do the same as you did for the SDcard transfer but choose the OSCAR data folder instead of choosing the SDcard folder.

Hope that helps

EDIT: BTW I think it's the "Respiratory Effort" spikes that should line up with your videos when you see chest-heaving and stomach-diaphragm-thrusting.
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RE: Plmnb - the journey continues now with ST-A.
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RE: Plmnb - the journey continues now with ST-A.
(Thank you Crimson Nape)


Now, back to the issues at hand.  I have been on iVAPS therapy now for exactly a week.  I am having difficulty comparing apples to apples because I switched back and forth on some nights between mask types and like an idiot did not notate exactly which night was which mask on all the dates.  I even missed one night of recording data because I forgot to use the SD card.  The first five nights were on EPAP 12.  The last two nights have been at EPAP 13.     

(Strangely, one night, don't remember which one now, I swear there is a chart that does not line up with the video clip time stamps at all.  For example, when I woke up that morning and looked at the video it was showing me without my mask on, yet there were OSCAR readings with no leaks.)

Briefly I thought I had stopped with "yoga sleep" but apparently I have not. I just viewed a bunch of video and this still takes place with mask on or off.  I guess I'm going to keep that upcoming neurology appointment.  I wonder if he might have any experience with PAP therapy as well, would be great if so. It has been suggested that I must be uncomfortable from something.  And apparently I am.  It isn't as simple as the mask and head gear.  Last night's video shows not only the "yoga"  but a horrible out of no where attack of the Meraligia at approximately 1:50.  (Had mask on and was sleeping what appears to be peacefully.)  From that point on, until approximately 06:27, when I actually put the mask back on and lay down, I struggle with "yoga sleep".  I think it is one of my longest periods yet.

At this point I don't think posting anymore charts will be of help.  It is plainly obvious there is more going on here than simple sleep apnea.  My neurology appointment is the 4th of March.  I'm going to see if they could see me earlier.  Don't think they can, but I'm going to try.

Something has to be done.  I'm still so tired after a while during the day that it is dangerous for me to drive.  Yesterday I had to pull over and have my husband do the driving.

So thanks EVERYONE for your efforts on my behalf. 

Most Sincerely,
Plmnb
Huhsign  WARNING: It may take a while to sink in...I tend to get befuddled at times.
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RE: Plmnb - the journey continues now with ST-A.
Plmnb,

I just want to say that I'm really proud of how you have handled your journey. I think you are wise to stop the data dumps and charts and paper chasing and see what the neurologist has to say. Sleeprider and vsheline have given you settings that you can use to guide you.

The one line in your post I focused on was "Had mask on and was sleeping what appears to be peacefully."

Everyone is pulling for you and only wish the best as you move forward. Even if at times it seems like a crawl, just keep moving.

John
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RE: Plmnb - the journey continues now with ST-A.
Sorry to hear about the continued hip pain.

What you said about the Yoga stuff sounds consistent with my hypothesis from weeks ago.
I suggested that if your breathing is particularly bad, your body will want to get vertical to fix the breathing.. ie the Yoga position.

Continuing with the hypothesis..
If you have the mask OFF, you will have zero therapy and zero stenting, your breathing will be the worst it can be, the chances of Yoga go up accordingly.
If you have the mask ON, you will be getting some therapy and some stenting, your breathing  may not be perfect because we have not found optimal settings, so the Yoga stuff should be less likely but still happening when the breathing is at its worst.

Pushing the hypothesis to the limit..
If we ever manage to get your breathing to be consistently good, then my hope is that there will be no need to get vertical and the Yoga will stop.

Of course, this only makes sense if the Yoga stuff is indeed caused "simply" by bad breathing and bad flow.

We'll be here when you return.
Good luck in the meantime.
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RE: Plmnb - the journey continues now with ST-A.
Hi 70sSanO and AQ.

Thank you so much for the words of hope, wisdom, and luck.  It means a lot to me.

I will continue to use the PAP probably with the settings I have now because adjusting them just doesn't make sense right now with the other sleep issues.  Obviously, I will still need pap therapy because my ALL of my sleep studies have shown me with OSA. (I have had approximately 6 that I can count).  I just can't figure out why non of those studies indicated the "yoga" situation.  What, because I'm not having PLM nothing else counts??  With around 6 studies I never had the "yoga"???? The Meralgia has resurfaced after 7 or so years.  I had forgotten all about it until this past week and found my medical records.  It is not really hip pain.  It is a condition where there is too much pressure or damage to one of the nerves in your leg.  Specifically the lateral femoral cutaneous nerve, which no longer has room to pass through your hip bone or joints. Usually looser clothing or losing weight is supposed to help.  But surgery is sometimes needed.  My clothing isn't tight and although I could stand to lose weight, 66 extra pounds should not be causing this.  My husband says it is because I am leaning on my legs when I do the "yoga" and when you do yoga I don't do it for hours at a time.

Just imagine shredding a searingly hot cooked chicken breast apart with your hands, that is what wakes me up from my sleep at times and often happens during the day when I am awake and least expecting it.

I'll still be on the boards, just not posting charts or asking about setting changes for a while.  I'm going tp give you all a break.  Eat-popcorn 

Plmnb
Huhsign  WARNING: It may take a while to sink in...I tend to get befuddled at times.
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RE: Plmnb - the journey continues now with ST-A.
After seeing the data you have provided I can safely say you have extremely severe obstructed breathing that showed only minor improvement on CPAP and that even the ST-A has had trouble dealing with it. In part this might be because it is not set up right yet but it could also be that your restricted breathing may be so severe that positive airway pressure treatment just isn't capable of solving your problem.

Once your obstruction occurs increasing PS/IPAP doesn't open it back up. Your getting 18 cm PS at times but all this does is force a little bit more air through your restricted/nearly closed airway slightly prolonging the impending RERA. Eventually you wake up, change positions etc and this seems to help for a bit. The one strange thing to me is why you don't have more obstructive apneas which makes me wonder what the cause of these horribly restricted flow limited breaths may be. Part of me still wonders if it isn't something to do with PAP treatment through the oral passageway as you said you are a mouth breather and there are some similarities in your data to the issues I was having with my grandfathers inability to use a full face mask for unknown reasons. 

In my opinion as far as self titration goes the only thing to try is higher EPAP in the hopes that it will hold your airway open. I'm not just talking 13 or 14 cm, I'm talking 16, 18 maybe even 20. There is no guarantee that this will work though and honestly I am a bit hesitant to even ask you to try it and the only way I would do so is if you were willing to share the data so I and others could interpret it. I wanted to see your Vauto data to see if it indicated any improvement at higher EPAP before even proposing this but I see you have decided against doing so and I don't blame you.

I am going to be a bit frank here, hopefully it doesn't hurt your feelings. I do not believe that you should be self titrating. You don't know enough about how to interpret your data and posting these OSCAR summaries and the odd zoomed in screenshot doesn't provide enough detail/information. If you are going to self titrate you need to find someone that you trust and that is knowledgable and willing to look through ALL of your data and make changes based on what they see. Your restricted breathing is probably worse than 99% of people with obstructive sleep apnea and based on the data I have seen it is not clear what causes improvement. On CPAP higher EPAP actually correlated with worse AHI, flow limitations and RERA's BUT that is the problem with APAP, the higher EPAP may not have been causing those issues it may just have been higher because those issues were occurring more on those nights. In short even when looking at the details it is difficult to make clear interpretations on how to proceed, it is impossible to do so just by viewing the odd summary. 


My recommendation is that you need to find some good doctors to get this figured out which unfortunately may not be easy as it sounds like you have already realized. A really good sleep doctor with knowledge of both CPAP options as well as other surgeries, implant options etc would probably be beneficial. ENT, Pulmonologist possibly Neurologist as you mention(although I doubt nerve issues are causing the flow restrictions). Having a good sleep clinic do a proper polysomnogram titration study with the goal of getting rid flow limitations (not just AHI) would probably be good. 

I don't know that I would rely on the doctor or technician that gave you the current prescription for the ST-A and set it up for you. Unless those settings were determined in a titration study(which I don't believe they were) then someone either made a mistake or didn't know what they were doing. I believe you had made mention of a discussion with Dr. Krakow at one point and it might be a good idea to set up an appointment and titration study with him as then you would at least know you are getting one of the best and most knowledgable doctors when it comes to diagnosing and treating flow limitations which is your main problem.

I'm always willing to help to try to interpret data etc but I can only give you theoretical advice and I believe you do need more than that. Good luck, I hope you can get this figured out, keep us posted.
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RE: Plmnb - the journey continues now with ST-A.
(02-25-2020, 01:41 PM)Plmnb Wrote:  when I do the "yoga"  I do it for hours at a time.
That was what that was supposed to say.
Plmnb
Huhsign  WARNING: It may take a while to sink in...I tend to get befuddled at times.
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RE: Plmnb - the journey continues now with ST-A.
(02-25-2020, 01:41 PM)Plmnb Wrote: when I do the "yoga" I do it for hours at a time.

That was what it was supposed to say.

Plmnb
Huhsign  WARNING: It may take a while to sink in...I tend to get befuddled at times.
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RE: Plmnb - the journey continues now with ST-A.
Plmnb,

If you haven't already you need to try using silicone earplugs to help with the leaks. People tend to just roll them between their fingers into a tube and stick them on to the cushion, that works too, but there is a much better way. You would roll one plug between glass panes and combine it with a 2nd plug until you reach the desired tube length and width. Then you would lay it out on the glass and press on it to flatten into a neat, custom made silicone cushion. Below is the link to the shatterproof glass cutting boards that I've been using for the past 6 months. They are tough enough to take my entire weight without even a sign of stress (though your weight may vary). If it comes out too long or too short, you can always stretch it or cut it, though it's best to get the length right for the best seal. You could keep piling on layers of these cushions every night until there are too many, then just peel off, remold and re-use. Just remember to wipe it down with baby wipes / mask wipes every day to get rid of as much skin oil as possible. I ended up saving a decent chunk of change on replacement cushions as my Airtouch F20 foam cushion is now around 6 months old, even though it's designed to last a month and usually fails in 2 to 3 weeks.

[commercial link removed] Search Amazon for: Clever Chef glass cutting board

There are 2 types of silicone plugs, the original Mack's brand, and all the other brands (Equate, etc). Mack's brand is slightly softer and a little more expensive, but you could use it less than the others because it's more stretchable, so it balances itself out pretty well. The other brands are all made of the same, slightly firmer material.

This is the ultimate solution for mask leaks IMHO and it's not mentioned anywhere. No-one should be complaining about leaks without first trying this.

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