BiPAP AVAPS difficulties

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931
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Diagnosis: LGMD2D
Diagnosed: 1980
City: Grand Rapids
State or Province: MI
Country: USA

BiPAP AVAPS difficulties

Postby 931 » Mon Feb 29, 2016 8:23 pm

I was diagnosed with LGMD at the age of 10. I'm now 43 and found out my subtype last year is 2D. I reestablished with a neurologist last fall after not having seen a doctor specifically for my MD since my late teens. I had all the necessary tests performed and learned that my heart is healthy. My breathing muscles, however, are not. My FVC is 20%. I was having no symptoms at the time other than a weak cough. I started a Cough Assist immediately and that's been going fine. I was then prescribed the Respironics BiPAP AVAPS S/T. That has NOT been going fine. I've been taking baby steps with it, trying to increase my time slowly, and I'm still struggling with it. My settings are very low because I felt like I was hyperventilating. My RT and pulmonologist kept everything low because I wasn't feeling well using it at first, with plans to increase my settings to more therapeutic levels as time goes by. Now I'm beginning to question if I'm under-ventilated. I feel short of breath after using my BiPAP, my chest feels heavy, I feel winded. It's an overall uncomfortable feeling and not normal for me. I wake up constantly at night while using it. The longest I've been able to use it at one time is 4 hours. I contacted my pulmonologist today to let him know how I was feeling and he said, "Your arterial blood gas test (ABG) was much better than expected and would not normally require BiPAP use so I think you can back off, especially since you feel increasing use creates increasing difficulty. Try going a few nights without it and then let us know what you feel like."

I would greatly appreciate your opinion on my current settings. I really want my BiPAP to work for me, but cannot tolerate how it has been making me feel.

Mode: S/T
AVAPS: ON
TIDAL VOLUME: 200
IPAP MAX: 20.0
IPAP MIN: 8.0
EPAP: 4.0
BPM: 6
TI; 1.5
RISE TIME: ON
RISE TIME; 3
RAMP TIME: 20
RAMP START PRESSURE: 4.0

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bachjr
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Re: BiPAP AVAPS difficulties

Postby bachjr » Wed Mar 02, 2016 6:28 pm

AVAPs does not permit deep breaths at all and should not be used. Assist control on volume preset with active circuit at 700-1400 ml, rate 10-12 should be used as you can read about in breatheNVS.com You should definitely NOT be using any BiPAP modes like AVAPs.
John R. Bach MD
Medical Director, VentilaMed BreatheNVS
Medical Director, Center for Ventilator Management Alternatives
Professor of Physical Medicine and Rehabilitation, Professor of Neurology, Rutgers New Jersey Medical School

931
New Member
New Member
Posts: 2
Joined: Mon Feb 29, 2016 7:47 pm
Diagnosis: LGMD2D
Diagnosed: 1980
City: Grand Rapids
State or Province: MI
Country: USA

Re: BiPAP AVAPS difficulties

Postby 931 » Wed Mar 02, 2016 6:44 pm

Thank you. I knew something wasn't right and didn't know why. I will pass this along to my RT. Thank you for this board, Dr. Bach.

~ Jenny

Ycolon11
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Diagnosis: Sma 2
Diagnosed: 1993
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Re: BiPAP AVAPS difficulties

Postby Ycolon11 » Sat May 13, 2017 10:29 pm

This is exactly my case right now. It's driving me crazy. I want it to work for me too but Is not. I have the trilogy 100 with settings similar to this person.


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