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Looking for some help - almost 5 years and not feeling a lot better
#81
RE: Looking for some help - almost 5 years and not feeling a lot better
Umm OK maybe you're seeing one of these incline signs and it means your incline is a bit too steep.

[Image: KtW3Ll1.png]
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#82
RE: Looking for some help - almost 5 years and not feeling a lot better
The slope is not that bad!  Laugh-a-lot The incline is only a few inches over the entire bed length.  Just calculated the slope angle: about 0.1 degrees.  Not much.  Still end up with my feet hanging off the end!  I have removed the bricks from the bed legs.  I'm back to flat.

Tried last night with a single pillow and a rolled up small towel under my neck along with the soft collar.  This morning I found the towel off to the side, so it may not have been doing much.  When I woke up, I was on the pillow.  Although there are still CA's they are not clustered like previous nights.  So that's good.  AHI is lowering as well.  AHI=2.68.  Don't know what the big leak was around 22:51, must of been while I moved or something, but it was prior to actually falling asleep.  Sleep onset was nearly 36 minutes, which is long for me.  Didn't have to get up during the night.  Didn't have to fiddle with any settings.

   

Better, but nowhere near good yet.  However, it's forward progress.  Will try 2 more days at these settings and await further guidance.
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#83
RE: Looking for some help - almost 5 years and not feeling a lot better
OK we'll take any improvement we can get. I suppose really right now just build a positive trend. Congrats on sticking with it.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#84
RE: Looking for some help - almost 5 years and not feeling a lot better
Last night was worse than the previous, at least for CA.  Single pillow, like last night.  Yesterday, I woke up 15 minutes before the alarm.  Today, the alarm went off, and I wished it hadn't!   It was a hard wake up and hard to get going.

27 minute sleep onset.  Cluster of CA's at just prior to onset, which should be sleep wake junk.  Still some of those events were loooooong, at least for me.  During that 5 minute period (300 seconds) I had a total of 6 events which spanned 140 seconds!  One event was 43 seconds.  Seems scary long to me.  As a how do I feel report, I'd say I'm dragging a lot, way more than yesterday at this time.
   
If I zoom into my flow rate, I can see the tops of the inspiration still have divots or small features.  They are only infrequently totally rounded.  This may indicate I need more pressure support.  I may be totally wrong however.  That's why I'm asking about it.  Here's a small snippet.  It's really hard to tell if the snippet is truly representative, however.  It's crazy difficult to parse this information by eye.  Looking for issues at a sliding 3 minute window over 8 hours is quite difficult to do manually.  Wish there was an automated way to scan for problems.  During this time, there were no flow limits indicated.
   

Stay the course?  Try to acclimate some more?  Do something?  Looking for some guidance.  I appreciate all the help so far!
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#85
RE: Looking for some help - almost 5 years and not feeling a lot better
The dragging feeling can be caused by arousals from the pressure changes or the slight flow limitations.  It appears that your CA's occur when the pressure increases. Your few OA's and Hypopneas look positional, so I am discounting them for now.  You may not be tolerating pressure changes well.  You might try the "S" mode.  Setting your EPAP to 8 and your IPAP 12.  (or, VAuto mode with the EPAP=8, PS=4, and IPAP Max=12) You can leave the Trigger alone for now.  Now that you have a baseline of the variable pressure, one night should show if this is going in the right direction.

Keep these 2 things in the back of your mind; 1. You don't know how long you had apnea before it was diagnosed and, 2. Everything you do from now on, is a step in the right direction.

Looking forward to seeing your next chart.
Crimson Nape
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___________________________________
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#86
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-27-2020, 09:10 AM)Crimson Nape Wrote: The dragging feeling can be caused by arousals from the pressure changes or the slight flow limitations.  It appears that your CA's occur when the pressure increases. Your few OA's and Hypopneas look positional, so I am discounting them for now.  You may not be tolerating pressure changes well.  You might try the "S" mode.  Setting your EPAP to 8 and your IPAP 12.  (or, VAuto mode with the EPAP=8, PS=4, and IPAP Max=12) You can leave the Trigger alone for now.  Now that you have a baseline of the variable pressure, one night should show if this is going in the right direction.

Keep these 2 things in the back of your mind; 1. You don't know how long you had apnea before it was diagnosed and, 2. Everything you do from now on, is a step in the right direction.

Looking forward to seeing your next chart.
I still need to digest what you said, so I'll address that a little later.  Not sure I follow your statement, It appears that your CA's occur when the pressure increases.  I found one case where that happened, but we are talking about a lot more events that that.  What makes you state this?  Maybe I don't know what to look for.  Please, not being combative, I want to learn more about this.  You have been at this a lot longer than I.

A while back, I installed a surveillance camera in the bedroom.  The camera is predominantly pointed at the doorway, but it covers me in the bed.  When one is desperate enough, one does this stuff.  So I decided to look at 18 recorded events last night.  Hmm, that's a lot!  At least to me it's interesting.  Hope its relevant.  With my Respironics the clock drifted so far, I couldn't correlate video to apnea events.  The ResMed is a lot closer to true time.

23:23 Move arm from under blanket, slightly bob head, small foot movement.  First CA is 15 seconds before this recording.  1 second after this recording, next CA
1:18, 1:32  CA+OA, OA event.  Video shows lot of body movement (arms and torso)
1:42  OA Moving arms and arranging blanket slightly
1:58  2 CA.  Spouse moves, followed by my movement and adjustment of blanket.  Torso and arms move.  CA's are in this movement.
2:30  UF2  No video
3:21  Leg and arm movement followed by CA
3:22  Pull in a leg, lift torso, go to side, followed by CA
3:47  UF2  No video
4:08  No apnea, but irregularities in flow rate.  Change in position, lifted whole torso and head up.  Position changed from side to back.  Flow limit indicated at 4:09
4:11  CA, no video
4:23  H, no video
4:24  CA, no video
4:34:45 H, no video
4:35  Spouse moves, minor flop of my hand
4:38:23 CA, move arm, blanket, slight torso movement
6:23  CA Arms move, whole torso, head up, slight roll to side

So it seems about half of the apnea events were associated with movement.

I've probably had apnea a very long time.  I was a sort of burst person.  I had strings of poor days, punctuated by extreme bursts of creativity and productiveness.  These bursts kept me in the game.  I didn't know this wasn't normal, and I never questioned it.  Around 2005, during a business trip in Europe I caught some sort of flu like illness.  I was sick as a dog in a hotel room for almost 5 days.  After that, I started having migraine headaches that lasted for days.  I was treated for these headaches but it wasn't effective.  It's quite likely I was asked if I had a sleep problem, and I probably denied it.  I wasn't aware that I was being aroused in the evening.  Just that I had terrible headaches.  A few years later, things got even worse, and by chance I woke up in the night with an apnea event.  The light went on, and I told my doctor that maybe I had sleep related problems.  Then I had a sleep study in 2010 (which I posted in this thread).  After a while, even treated by a brick, the headaches started to decrease.

But now, after many years, the headaches, fatigue and weariness are creeping back.  It's not good.  All my medical tests have come back 'normal'.  

You are right, what we are doing here is a step in the right direction.  It's a slow, uphill crawl back, but worth the effort.
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#87
RE: Looking for some help - almost 5 years and not feeling a lot better
From my reading here, it is my understanding that PS is necessary to lower flow limits, but that higher levels of PS can aggravate the incidence of CA. If my understanding is correct, the body may slowly adjust to PS over time. I have also read of lowering PS to reduce CA, stabilize and then slowly creep up on PS to get the right balance of CA and all other apnea & flow limited events. Is this a correct understanding? If not, what is the best understanding of how to proceed?

My flow rates show a not quite fully corrected morphology, but they are far superior now to what I had in the past with my old machine. Is my flow rate marginal, or good enough to consider doing what is described in the paragraph above?
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#88
RE: Looking for some help - almost 5 years and not feeling a lot better
I see the urgency in your post, but all I can offer is recommendations based off your data. This does take time. If settings were definitive and treatment was immediate, there wouldn't be a need for this board. Do you realize that an AHI under 5 is considered treated by the medical profession? The act of changing a sleeping position can cause an event to be recorded. If you go to the Events tab in the Daily screen (upper left, below the date) you will see each event category and a number in parentheses next to each event. This number is the amount in seconds that the event occurred. In order for an event to be recorded (CA'a and OA's) they must last at least 10 seconds. ResMed's don't specify a time for Hypopneas. It's very easy to get caught up in the numbers. A 0.0 AHI is possible but not repeatedly realistic.
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Beginner's Guide to Sleepyhead and OSCAR
Apnea Helpful Tips

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#89
RE: Looking for some help - almost 5 years and not feeling a lot better
I see you posted while I was editing my last post. You are correct about PS. However, PS can cause initial pressure induced CA's that the body will become accustomed to and adjust accordingly. Think about it as sticking your head out the window of a fast moving vehicle. Your first reaction is not able to breathe (that and your eyes water). After a few seconds you are able to breathe. This is the same with a CPAP. Increased pressure may cause a monetary pause of your breathing.
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Beginner's Guide to Sleepyhead and OSCAR
Apnea Helpful Tips

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#90
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-27-2020, 11:04 AM)Crimson Nape Wrote: I see the urgency in your post, but all I can offer is recommendations based off your data.  This does take time.  If settings were definitive and treatment was immediate, there wouldn't be a need for this board.  Do you realize that an AHI under 5 is considered treated by the medical profession?  The act of changing a sleeping position can cause an event to be recorded.  If you go to the Events tab in the Daily screen (upper left, below the date) you will see each event category and a number in parentheses next to each event.  This number is the amount in seconds that the event occurred.  In order for an event to be recorded (CA'a and OA's) they must last at least 10 seconds.  ResMed's don't specify a time for Hypopneas.  It's very easy to get caught up in the numbers.  A 0.0 AHI is possible but not repeatedly realistic.
I'm not chasing numbers.  I only want to feel better.  The urgency is only - it's been long enough, over 15 years, if I count 2005 as the start point, it's my time to get a chance at feeling human again.  I think everyone deserves that chance.  If I sound urgent it's because I don't like feeling lousy and I have decided it is time to change and make things better.  Yes, from what I hear, it will take a while.  Sorry if I was sounding desperate, but honestly it's how I feel.  It's incredibly difficult to deal with apnea and the rest of life's issues, especially if you have a full plate.  I'll not bore the list with that, and keep the discussion on topic.  Apnea robs you of the sense and stamina that's needed to cope.  Mind you, I haven't fallen apart, but now I can see the crumbling edge and the abyss is deep.  Don't want to go there.  I'm backing away from the edge, helped by the knowledge I'm attaining from knowledgeable people like you on AB.  Step by step, hope to reach my goals.  My goals are not to just stay away from the abyss, but more to get closer to the mountain tops.  With a little help from here, I hope to reach that place.

/start feisty
My comment on AHI=5 = Good, is simply, this rule was made by fortunate people who don't suffer from apnea.  And certainly made by those who do not suffer from non restorative sleep.  If you set an insurance executive in a sleep lab and woke that person up to a wake state once every 12 minutes for random durations of 10-30 seconds, all night long, for a week, they would beg for mercy.  They'd be vegetables.  Do you know any doctors or insurance folks who would sign up for this test?  It would be interesting to read the notes on that study!  If I'm fantasizing about this, and the test really has been done, with no such ill effects, I'd like to read it.  Have to say, I'd pore over it and question a lot of things, but I'm capable of saying I was wrong.

In my opinion, it's disingenuous for the medical community to think that 9 10 second events are far worse than 10 9 second events.  It's 90 seconds of interrupted breathing in both cases.  I could have 2880 9 second (50%) drops in breathing in 8 hours, and that wouldn't be a problem?  Of course it would be.  But hey, it wouldn't be apnea!  
/stop feisty

One of the things I do count is total time in apnea.  The fewer the minutes, the better I generally feel.  To be honest, it ought to include sub-apneaic events due to my paragraph above.  But in general, it's the integral (or the sum for those afraid of integrals) of the duration of the events.

As far as positional apnea, is there any hope for this?  Why on earth do I shift so often?  Is it in response to breathing issues, or the cause of breathing issues?  Is there a way to become a calmer sleeper?  How do you do zen while you are asleep?  I say this in jest, but I hope you understand what I am asking.
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