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[Treatment] Ongoing Symptoms despite 4 years of APAP
#1
Ongoing Symptoms despite 4 years of APAP
First, I want to say a heartfelt thank you to the developers of OSCAR and the maintainers of/contributors to this forum. Apologies in advance for all the detail, but I thought it relevant given how long I’ve been using my APAP. 

Having used APAP for more than 4 years, I remain symptomatic. Symptoms tend to come in waves, often wiping me out for weeks at a time.

Any advice would be most welcome. In particular,
-          Is there anything else I can do to improve my symptoms?
-          what are members’ thoughts on whether I would benefit from BiPAP or ASV?
 
My health care provider has refused to fund alternative treatment as it is “not clinically supported” (threshold for trial is a treated AHI of 15), so trying these alternatives will likely come at substantial out-of-pocket cost.

Background:
Diagnosis:                        Jan 2021
Duration of treatment:       ~4 years (received CPAP machine in Mar 2021)
AHI at diagnosis:               ~43
Average AHI (treated):       Median: 9.07, Mean: 9.5
Average 95% FL (treated):  1.6
BMI at diagnosis:                25

Symptoms:
Fatigue, Brain-Fog, Emotional dysregulation

Equipment:

xPAP:            ResMed AirSense 10 AutoSet
Mask:            ResMed AirTouch  F20 full face
Oximetry:      Wellue O2 Ring
MAD:             Neomen Mouthpiece (boil and bite)
Positional:      DIY (esp32) Somnopose
                     Mulisoft Memory foam pillow
                     Neck collar
Settings:
Mode:             APAP
Min Pressure:   12 cmH2O
Max Pressure:  16 cmH2O
EPR:                1 cmH2O

Long Term Trends (4 years, 2 months):
My central apneas dominate, and whilst they fluctuate and follow short-term trends, the long term average is  consistent.

Recent trends (15 months):
Obstructive apneas, hypopneas, 95% Flow Limitation and OSCAR UF2 have somewhat responded to weight loss and positional / MAD therapy over the past 15 months.
Experimenting with lower/fixed pressures to avoid central events led to substantial increases in 95% Flow Limitation and worsening of symptoms.
   
 
Compliance and Leak Rate:
I am highly compliant with treatment. I believe my leak control is OK
   

Example daily reports:
   
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#2
RE: Ongoing Symptoms despite 4 years of APAP
Welcome to the forum,
How did you feel during the day?
Try not to chase numbers, but how you feel.
Can you post a copy of your sleep report with your personal info redacted? We need to see if you have CAs on the sleep study, if you did ave CAs, then you may be on the wrong machine.

You may do better with the lower pressures since your obstructive events are not terrible.
Try minimum pressure 8 cm and maximum 13 cm . Set EPR to 2.  This tighter pressure range may lower your CAs and make your sleep more restful without the wild pressure swings.
Your hitting the maximum pressure so often is driven by your flow limitations, not obstructive events for the most part.

Raise your ramp pressure to at least 7 cm , 4 cm is too low for an adult.

Try these setting for a few nights and post so charts, unless your sleep is much worse.
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#3
RE: Ongoing Symptoms despite 4 years of APAP
Thank you for your response. 

I generally feel fatigued and plagued by brain-fog. Having been a regular reader, I have not been able to read a novel since a year before my diagnosis. I have not noticed a correlation between sleep-score and how I feel, but it gets really bad in waves (often for weeks at a time) where I am unable to concentrate on anything beyond passive entertainment (TV or a movie) and sleep for 12 hours a day.. 

Please find my sleep report attached.
   
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#4
RE: Ongoing Symptoms despite 4 years of APAP
Since you had over 10/hr central apneas during your sleep study you are on the wrong machine, IMO.
Others with great experience and knowledge will tell you what machine you need to treat these.
Your present machine is not treating them and is really incapable of doing so.
You may need a script for a bilevel or another machine.

I purchased a slightly used bilevel out of pocket as a test.

I wish your well.
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#5
RE: Ongoing Symptoms despite 4 years of APAP
I agree with Doug.
84 Central's in 8hrs?  and they sent you out with a machine that can't treat central's. A pox be upon them for doing that. Angry

You need to get with your family doctor and fix this ASAP.
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