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New Member - Hello! [how long before considering adjustments?]
RE: New Member - Hello! [how long before considering adjustments?]
In part, yes and the money factor. I do think the compliance of 90 days helps give insurance a long trial to prove results beyond that less than ideal sleep study or titration before they open the purse for a more expensive machine. Like in my case, the compliance time revealed BPAP was not the right tool despite the doctor's claim treatment was sufficient.
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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RE: New Member - Hello! [how long before considering adjustments?]
The machines used in sleep clinics can emulate any mode from CPAP to ASV and the different flavors of bilevel. The determination of how a test is designed and what it evaluates is up to the prescribing doctor. The problem with that is most doctors only understand obstructive sleep apnea. The notion to try alternative modes or even focus on SpO2 or respiratory rate and function NEVER happens. I am yet to see it. As you can imagine this results in much higher costs and delays for the complex and central apnea patient.

As I suggested to Hojo, monitoring SpO2 with an oximeter might expedite things, however your minute vent is pretty good in spite of low Vt and height bpm.

Insurance has mapped out a progression by which different levels of machines will be approved for reimbursement and that has replaced any science or medicine in the sleep disordered breathing diagnostic approach. Very sad. Most of these people have science backgrounds that they simply don’t use due to the insurance procedures.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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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RE: New Member - Hello! [how long before considering adjustments?]
I would definitely talk to your doctor about it. That you would like to be titrated for multiple protocols, up to and including ASV so that you can have data to indicate which mode is best for you.
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RE: New Member - Hello! [how long before considering adjustments?]
I have a call in to my cardiologist to discuss.  I am hopeful that he will hear all of this and be able to advocate for me to push this along more quickly.  I don't know if I can make it until Thanksgiving with current state of affairs.  

My plan is to state the following to both docs as a summary of my treatment so far:
> 3 months on two brands of APAP, feel worse today than before treatment
AHI routinely above 5, trending higher lately, majority of apnea is indicated by machine as central and hypopnea.  Occasional < 5 achieved with Afrin and luck
Subjectively increasing daytime sleepiness (Epworth score is worse today than day 1 of treatment)
Decline in work performance, memory, mood
Machine indicated central apneas and hypopneas, some of which involve periodic breathing, rapid breathing and panting, some machine indicated CSR
History of AFib and Cardiomyopathy in Left Ventricle, on blood thinners throughout treatment
100% compliance between both machines, averaging 7 hours per night even with early waking insomnia
No history of insomnia prior to treatment

This should get someone's attention when put all together, right?  

Leaks?
As for last night, I tried the remzzz's and it was a partial disaster.  My leak rate was off the charts.  It is almost as if the barrier encouraged leaks, but also made them quieter so that I didn't wake from them.  I am genuinely confused how the exact same variables, where the only thing changing is the machine and tubing, could lead to such differences.  

My average leak rate on the Dreamstation was 0.94, with a max of 13.24, over an 84 day period, as reported in Oscar.  My best night on the Airsense 10 is 17.9, with a max of over 30%.  I am using the exact same mask, on the same body, in the same bedroom.  I have swapped Airsense tubes (got standard originally, swapped for climateline) and changed filters just to be sure the included filter wasnt defective.  The machine reported 0 hours when received.  Is this just a calculation issue, e.g. Dreamstation didn't count leaks the same as Airsense?  Or is there a chance my machine isn't functioning properly?

One observation - I can hear my humidification chamber adjusting with pressures, on an inhale it sounds like the chamber is being pushed slightly open, and on the inhale, the inverse.  This doesn't happen every night, but has become noticeable as well given how aware I am of my surroundings at night nowadays.  Anyone else experience this?

I am at a loss.  Charts attached.  My AHI was better last night, and I actually do feel slightly less groggy today as compared to yesterday.  That is positive.


Attached Files Thumbnail(s)
           
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RE: New Member - Hello! [how long before considering adjustments?]
Your extreme flow limitation needs pressure support to correct it, but in your case that will result in higher central apnea incidence. I think you need ASV but be warned that currently, it is almost impossible to obtain a prescription for ASV with a left ventricular ejection fraction of less than 45% due to the SERVE-HF study in 2015 that associated a risk of death in heart failure patients meeting that profile. A new study ADVENT-HF is underway showing more modern ASV does not post this risk. https://www.mdedge.com/chestphysician/ar...d-serve-hf
https://www.mdedge.com/chestphysician/ar...-no-safety

On future daily detail charts, substitute the mask pressure chart with respiratory rate so we can track.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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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RE: New Member - Hello! [how long before considering adjustments?]
Now the fight begins. Hope it's quick. And please post updates and if you have questions.
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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RE: New Member - Hello! [how long before considering adjustments?]
https://youtu.be/TgpiQGuaqzo

This is pretty good!  

Also, sleep doctor just responded in response to my cry for help - looks like I can get in with him sooner, but he isn't approving an ASV device without bipap trial and failure:

Hello Mr. ,
Contact __ and make a follow up appointment with me for sooner then 11/25/19. We are going to have to document all of this and submit a request to [my insurance] to try to get them to approve an in lab CPAP/BIPAP titration. We would not just jump to an ASV device right away prior to BIPAP. If you get your Echo done prior to a follow up with me, please bring those results to your follow up appointment.

Thank You
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RE: New Member - Hello! [how long before considering adjustments?]
OK congrats on a bit of progress there. Tis a bit of a rough road ahead but you'll get through this. Post updates when the machine swap occurs. Maybe it's just me, but BPAP failure possibly could be quick. Depends on what the doc wants out of this though.
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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RE: New Member - Hello! [how long before considering adjustments?]
Great news, you have your doctor on your side.
He seems to know exactly what is required.  

Your question to is something like "What do WE need to do to expedite this, to speed up the process?  What can I best do to help this speed along?"


Read this WIKI article
http://www.apneaboard.com/wiki/index.php...P_Machines

You now need to accumulate documentation to support the move to ASV.  This includes evidence of CPAP failing and BiLevel failing.

here is a list of symptoms from the WIKI,

Symptoms
Note that these are not all specific to Central/Mixed/Complex apnea. They are symptoms that impact our sleeping, arousals, and yes apnea too. Think of these, but do not limit yourself to these when you are asked "How do you feel?"

  • Daytime hypersomnolence;

  • Excessive fatigue;

  • Morning headache;

  • Cognitive dysfunction;

  • Dyspnea, etc.;

  • Fatigue;

  • Insomnia;

  • Difficulty going to sleep;

  • Difficulty falling asleep;

  • Wakening during the night;

  • Daytime Sleepiness;

  • Excessive Daytime Sleepiness (EDS);

  • Poor concentration;

  • Difficulty with balance;

  • Shortness of breath;

  • Dry mouth;

  • Restless Sleep;

  • Non-Restorative Sleep;

  • Snoring;

  • Obstructive Sleep Apnea;

  • Restless Leg Syndrome;

  • Nocturnal Leg Cramps;
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RE: New Member - Hello! [how long before considering adjustments?]
Well that was a difficult few days.  By Friday PM I was struggling after days of genuinely terrible feeling sleep.  


I woke up Friday night with chest discomfort.  After monitoring, was able to fall back asleep.  One change I made on Friday PM, when struggling, I raised the max pressure from 7-7.6, and also upped the EPR to 2, from 1.  I would rather have hypopnea and centrals than feel so physically unwell trying to sleep.  I was able to fall back asleep.  I felt like I was gasping for air and unable to relax.

Most of the day Saturday was uncomfortable.  I was weak, dizzy, exhausted, and feeling on and off again chest discomfort.  I ended up speaking with the on call cardiologist, and based on my description of my localized discomfort, he was pretty confident it was not cardiac in nature.  (I did send in my EKG data from  my loop recorder just in case).  I gave it time, and it did slowly resolve throughout the day.  That call saved me a trip to the ER!  Honestly, I think I may be struggling with severe aerophagia at times, and Friday night may have been pretty bad, although I don't know what caused the trouble so acutely.  I also suffer from chronic GERD, and maybe that was creeping up on me.

Saturday night was better than Friday, although I had forgotten to plug my data card back into the machine.  The machine reported an AHI of < 4!  I woke feeling more refreshed than I have been, but that bar is SO low right now, that I don't know if it was good, or just less bad.  I had another pretty good night Sunday night into this morning.  I actually had difficulty waking up today.  Since being on PAP, I never sleep in.  So I guess it was a good sign I was trying to sleep in this morning, recovering from the last few days. 

At times Saturday I honestly thought I was having a heart attack.  As someone who already suffers from an anxiety disorder, with an underlying cardiac condition, I think I am seeing my sleep treatment negatively effect my mental health.  Thankfully, I am catching up with my doctors ASAP.  My sleep doctor, after hearing all of this, is seeing me tomorrow morning.  My cardiologist wants to see me within the week.  All good signs, and I plan to come with my data.  I also had a good talk with the respiratory therapist who came to pick up my returned Dreamstation.  He encouraged me to complain loudly and with details to my insurance.  He told me to highlight to them that their mandated insurance steps to treat sleep apnea are actually causing my health to rapidly decline.  

I scoured my sleep study data AND sleep profiler data (only seem to have recent take home) from medical rescords, and am posting key data below, just in case it is helpful.  Also attaching the last few OSCAR charts to further document struggles.   

ARE THERE ANY SPECIFIC OSCAR SCREENS I SHOULD CAPTURE FOR MY DOCTOR TOMORROW THAT WOULD BE CONVINCING/TROUBLING OR GENERALLY HELPFUL FOR MY CAUSE?  I know he can see my AHI/RDI summary, but from a zoomed in view?   

TAKE HOME SLEEP STUDY RESULTS:
 6.4/HR RDI
SPO2 90%
REM: 18.2

SLEEP PROFILER RESULTS:  5/28/19

Sleep Effieciency: 87.1%
Feel Asleep 24 minutes
Started Stage N3, 22 minutes later, first REM, 188 mins later
7.1% of night in N1
14.0% in light N2
48.6% in total N2
15.6% in slow wave sleep (stage N3)
28.2 in REM

Aeakenings and Arousals:
Awake for 43 minutes
Average of 4.8 awakenings > 30 seconds and 1.1 awakenings > 90 seconds per hour of sleep
19.8 cortical arousals/hr
2.6 autonomic activations/hr
2.4 movement arousals/hr

Sleep Position:
39.1% supine
2.8% above 40db and 0.7% above 50db
______________________________________________


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