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Night 8, it's already Love - Hate. So glad I found you guys!
#1
Surprised 
Night 8, it's already Love - Hate. So glad I found you guys!
    Hi Everyone,
Im so glad to have found you. I feel I'm experiencing all the things you already know; my doc is poorly trained, my MDP is not especially competent either, my results thus far are pretty poor, I'm not convinced my settings are where they need to be...

My details from 5,000 feet:
My wife described to me "waking up gasping for air, then falling back into sleep, and breathing so shallowly, she was unsure I was even still breathing.  The poor thing often slept with her hand on my chest to verify I was, in fact, still breathing. Of course I wasn't actually awake, I was completely unaware of this happening.  I also, (apparently  Oh-jeez ) never heard her, dismissing it, as nothing, until my heart failed last year, and I ended up with a pacemaker, and now neuropathy, zero short term memory, inability to concentrate for very long, exhausted by late afternoon every day.  Fast forward to now, I've had a sleep study and titration study, and diagnosed with CSA, AHI 29. I am the proud new owner (renter?) of a Resmed AirCurve 10ST machine.  Tonight will be night 8.  My results, so far, are mixed, with events over the first 7 days averaging in the high 20's.  But last night I managed an AHI of 13.4!  Still away too high, I know, but I'll accept the improvement.

Here's my rub: I recorded the sounds from my machine as a test.  I mean I recorded the noise it makes, so I could actually measure, in a very simple way, my breathing pattern, while asleep.  I discovered that my centrals last as long as +60 seconds, and often, the "bump" from the machine does not kick start my breathing.  That is scaring the heck out of me.  My inclination was to ask my doc and MDP to increase my pressure a tad, until I read that may worsen centrals. 

So please, ask away!  What do I need to learn?  What should I be asking my doc?  I've downloaded Sleepyhead, and uploaded my SD card data and looked at the reports for the first 7 days.  Just shoot me!  Somebody in one of the threads posted "Steep learning curve, but worth it", OMG, I get the steep part...

Thanks Gang,
JP
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#2
RE: Night 8, it's already Love - Hate. So glad I found you guys!
G'day JP, welcome to Apnea Board.

The very first thing is that your apnea is primarily central, not obstructive. That makes a big difference to your treatment, and the advice we are able to give you.

I may be teaching my grandmother here, but the two types of apnea are very different. Obstructive sleep apnea occurs when your airway collapses during sleep, physically blocking the flow of air. This is the most common type. Central apnea occurs when the brain doesn't send a "breathe now" signal to the lungs. In most cases it's related to the brain measuring and reacting to the amount of CO2 in the blood stream. Generally simple constant pressure or or autoset devices are used for obstructive apnea and adaptive servo ventilator (ASV) machines are used for central apnea. There is then a middle ground with various breathing issues such as COPD which may be better treated with the S and ST type machines.

My initial reaction is that you may need to look at an ASV machine to get optimum results. However, there are a lot of other factors involved, such as any co-morbidities (eg asthma, COPD) and whether your heart is in good condition. ASV machines are contraindicated for people with severe congestive heart failure.

Let's have a look at your SleepyHead charts - that will give us a good indication of how the machine is going, whether there are pressure adjustments to try, or whether you should start advocating for an ASV. See the SleepyHead instructions (including the best way to format your charts) here: http://www.apneaboard.com/wiki/index.php...SleepyHead

By the way, SleepyHead will show the events and reactions much better than an audio recording.
DeepBreathing
Apnea Board Moderator
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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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#3
RE: Night 8, it's already Love - Hate. So glad I found you guys!
The normal path because of insurance rules is to 
FAIL CPAP
FAIL BiPAP
FAIL BIPAP w timed backup (you are here)
Succeed with ASV

It may be that this machine will work for you but the bulk of your Apneas are Central Apneas and the machine we expect to work the best is the most expensive, the ASV.

Thus the need to see your Sleepyhead charts which will let us see what is happening down to a breath by breath level if necessary.

Fred
New to Apnea? Helpful tips to ensure success
Mask Primer
Dealing with a DME
Download SleepyHead
Organize Charts
Attaching Charts

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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#4
RE: Night 8, it's already Love - Hate. So glad I found you guys!
Thanks DeepBreathing and Fred.  Appreciate everything you've said.  I understood the differences between OSA and CSA. I've been on that "Steep learning curve for a few weeks now. I'll upload the SleepyHead reports shortly, although I'm not sure the best way to get them to you, screenshots?

Some responses for background:
Last year I was diagnosed with Bradycardia, my heart's SA node, was failing.  I'd been wearing an Apple watch since the first week they were available, so I had some credible, constant, long term, heart rate data, almost 4 years worth.  We could see my heart rate had been gradually falling for all that time. Once I received the pacemaker, neuropathy showed up, burning feet and lower legs, numbness on the bottoms of my feet, and more recently, my hands were getting numb and cramping at night.  Test after test came back negative, ruling out a lot of sinister things.  I started to suspect that my blood oxygen levels might be involved, and looked into the possibility of having sleep apnea.  Sure enough, I have it, it's pretty severe, and it appears to be the worst kind.  I do have asthma, had it all my life.  It's not too severe.  A few nights ago I had to stop the BPAP therapy at 1 am to take my puffer.  I rested for about 45 minutes and was able to resume the therapy.   I'm very active, a life long athlete, so fairly strong.  Certainly I'm determined to beat this thing. 

I recorded a sound track which is incredibly telling - it may indicate what you are saying, that the BPAP is not going to work for me.  I'm going to try to upload a weblink for you, as it is a huge file, like 125mb.  I'm confident you are correct about the wealth of knowledge in SleepyHead, but wait until you hear the sound track of my machine operating!  

Stand by please, I'm going to refresh the SleepyHead account with last nights data - I took a turn for the worse, after seeing my AHI drop nicely on night 7 to 13 events per hour, it increased again to 20.3 on night 8.  I have thoughts about how I'm interacting with the machine, but I'll wait until you've had a chance to look at the Sleepyhead reports, then respond to your questions.  Thanks A TON!


[NOTE, after several tries, I've learned I am too new to post an attachment.]

I also tried to attache the SleepyHead csv file, but the board won't let me do that either.  Any suggestions?

JP
(FE350)
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#5
RE: Night 8, it's already Love - Hate. So glad I found you guys!
Thanks for updating the background - it certainly does help to get things in context.

Quote: I'll upload the SleepyHead reports shortly, although I'm not sure the best way to get them to you, screenshots?

Yes, in SleepyHead press {F12} to take a screenshot. See this page: http://www.apneaboard.com/wiki/index.php...SleepyHead

Your should be able to upload normal image files (jpg, gif, png etc). You need to have four posts to upload doc and other files. Zip, tar, html etc are restricted for more senior members. There are also size limits on individual files, but a SleepyHead screenshot should be well inside the limit. When you create your screenshots, make sure you follow the guidelines on how to organise the charts. Do one showing the whole night, then a couple zoomed in on some of the long apneas you're talking about. This will actually give us more information than a sound file.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


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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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#6
RE: Night 8, it's already Love - Hate. So glad I found you guys!
Hi DB,
The link to the guidance on how to post the SleepyHead files did not work.  I have searched a bit to see if I can find the guidelines in the threads, no luck so far.  Would you please try to resend me a link?  Ion the meantime, here is last nights screen shot, and zoomed into two tight regions where apneas were occurring.  I'll spend a few minutes next to see if I can find longer apneas, although, if I read the charts correctly, there are many in the current screenshots lasting 40, 50 and more seconds.  Am I correct?
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#7
RE: Night 8, it's already Love - Hate. So glad I found you guys!
First file, "all night data, starting with the Insp Time" view

Second Screen Shot, "All night data, showing Respect Rate" view


Attached Files Thumbnail(s)
       
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#8
RE: Night 8, it's already Love - Hate. So glad I found you guys!
Third file, "All night data, showing IE Ratio" view

Attempting to attache details now of three apnea sessions (zoomed in).


Attached Files Thumbnail(s)
       
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#9
RE: Night 8, it's already Love - Hate. So glad I found you guys!
Apnea Sample set 2

Apnea Sample set 1


Attached Files Thumbnail(s)
       
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#10
RE: Night 8, it's already Love - Hate. So glad I found you guys!
Apologies, I don't know how I gave you a bad link. The following should work fine:

1.  SleepyHead summary page: http://www.apneaboard.com/wiki/index.php...SleepyHead

2. Sleepyhead download page: https://sleepyhead.jedimark.net/

3. RobySue's Beginner's Guide to SleepyHead (This is a big article):  http://www.apneaboard.com/wiki/index.php...SleepyHead

4.  Sleepyhead chart organisation for best results:  http://www.apneaboard.com/wiki/index.php...ganization

5. Attaching images & files:  http://www.apneaboard.com/wiki/index.php...pnea_Board

It looks like you've got the attachments sorted, but i suggest you have a look at the chart organisation to get the best value. (Problem with SleepyHead is that so much detail is available, it's often hard to know what to include and what to ignore).
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

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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