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[Treatment] No success and no hope
#1
Sad 
No success and no hope
Sure this gets posted a lot ... need motivation to get back on the horse of my ASV because I've never had success or even come close to feeling like there was light in this dark tunnel of sleep deprivation. Here are my significant issues ... is there hope?

1) Diagnosed with complex sleep apnea and have paid for and used off and on a ResMed AirCurve 10 ASV
2) Tried both full face and nasal pillows to limited success on both
3) Pressures should be (as told to me by MD): Max 12; Min 6; Max Epap 12; and Min Epap 8
4) Any attempt to get close to clinically sufficient pressure (as noted above) causes me to be insufflated way above and beyond aerophagia causing extraordinary pain and massive volumes of gas comparable to what occurs following a colonoscopy accept there is rarely gas pain following a colonoscopy. Pressure also causes significant heartburn after a few days. Suspect I could have a weak or malformed Upper/Lower Esophogeal Sphincter. So, currently I'm not at those prescribed pressures as I can't tolerate the effects.
5) Also diagnosed with Periodic Limb Movement Disorder (meds seem to be ineffective and have been tested for iron/thiamine which was good)


I can't see how all three of these issues (PLMD, Insufflation, Insufficient Pressure) can be solved or at least resolved enough to get relief. I'm hoping someone says "yes, have hope ... do x ... then y ..." or maybe something else ... not sure  ... just hoping for thoughts, guidance, support.
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#2
RE: No success and no hope
Hi south523 - Welcome

To help provide all members with more information to help, please post a representative Daily screenshot of SleepyHead.  Please review the links in my signature for proper graphs to display and their order.  Also, please describe your sleeping environment. (e.g.:dominate sleep position(s), bed or chair, humidification, medications, etc.)
Crimson Nape
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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: No success and no hope
Thanks

Will do ... likely be later tomorrow.
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#4
RE: No success and no hope
If you are swallowing air during treatment and have heartburn over an extended period my guess is that you have gastroesophageal (GE) reflux. People often take medication for this to relieve the burning (the "purple" pill). But that would not work if you are swallowing air during treatment.  Ask your doctor for a GE reflux workup.  There is a simple test that can determine if this is your problem. 
GE reflux in a patient with sleep apnea can be dangerous because of the increased risk of aspiration. The cure would be an operation called a "fundoplication", done with scopes on an outpatient basis.

Good luck.
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#5
RE: No success and no hope
I'll add that your pressures do not make sense.  
I'd expect to possibly see these settings 

Min EPAP - the Lowest Pressure the ASV will use
Min PS - the min PS the ASV will use
Max PS - the Max PS the ASV will use
Max IPAP - the Highest pressure the ASV will allow

The numbers that you say your Doctor said do not align with these values in a manner that would allow the ASV to do it's thing.  Can you clarify the settings please.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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#6
RE: No success and no hope
FWIW The ResMed ASV has 4 pressure settings when running in ASV Auto mode: EPAP MIN & MAX then PS (pressure support) MIN & MAX. No setting will be accepted lower than EPAP MIN. IPAP settings are handled automatically by the machine algorithm with regards to the above 4 settings.

What I did with my ASV as soon as I got home from the DME was edit settings to the script. RT unfortunately had no idea what settings to use. I changed Mode then programmed my 4 settings from the script. AB members and I edited them a bit after some use and posting data from Sleepyhead. My current information is seen on the left. I'm not telling you to emulate/duplicate my settings, but put your own that matches requirements or suggestions.

"PS 3) Pressures should be (as told to me by MD): Max 12; Min 6; Max Epap 12; and Min Epap 8"
Maybe Doc means Max 12 and Min 6 are Pressure Support numbers. You might want to contact the Doc for clarification.

Coffee
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice.


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#7
RE: No success and no hope
Thanks Dave
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

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New to Apnea? Helpful tips to ensure success
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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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#8
RE: No success and no hope
Your Doctor said "Max 12; Min 6; Max Epap 12; and Min Epap 8"

thus EPAP 8-12
        PS 6-12

IPAP will follow EPAP + PS
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
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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#9
RE: No success and no hope
I was compliant for a pretty solid chunk of time this fall and will pull some representative samples as detailed by AB via SleepyHead. Hope to get those up tomorrow but it may be Friday. 

Not sure what you mean bonjour in your most recent post but can also take a pic of the tech setting menu and what the doctor provided. Basically, my settings right now because of the insufflation are at the trough of his recommendation: Max Epap 7.6; Min Epap 5.4; Max 10; and, Min 4.4 with a goal to get to therapeutic pressures of what I posted below (Max Epap 12; Min Epap 8; Max 12; Min 6). 

I'll take a pic of the settings menu as what the MD provided and where I input them made sense and there was  no confusion on my part on what to adjust. He allowed me the range (basically starting at the bottom) and guidance on how to adjust up by a few points (they go by tenths) every couple weeks in the hopes I would become accustomed to the pressure and the "aerophagia" would resolve. Going up by a point or two is about all it takes for massive, Hindenburg inflation and the effects are debilitating.
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#10
RE: No success and no hope
(01-30-2019, 03:06 PM)bonjour Wrote: Thanks Dave

Welcome.

(01-30-2019, 03:14 PM)bonjour Wrote: Your Doctor said "Max 12; Min 6; Max Epap 12; and Min Epap 8"

thus EPAP 8-12
        PS 6-12

IPAP will follow EPAP + PS

Yep that's how I'd read it.

Coffee
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience regarding CPAP therapy and should not be considered medically professional direction or advice.


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