03-15-2021, 03:52 PM
RE: New to me, ASV, Initial Questions
I apologize in advance for the novel, but details may be needed to fully appreciate my situation as regards the need for continued non medical help and support regarding my unique sleep and breathing issues.
Continuing ASVAuto Mode,, starting MIN EPAP 5 MAX EPAP 15 MIN PS 3 MAX PS 15 then moving EPAP MIN to 6 then 7 now 7.4 and last nights AHI at 3.71 with 25 Hypopneas and 10 UA's. The UA's went down some after wearing the Soft Collar. and I am more consistently at or below 5 AHI. We have clearly made progress, but I suspect I must now introduce other aspects of my hampered respiratory situation so you technical wizards can provide what the sleep doc system has never acknowledged beyond mild to moderate sleep Apnea of primarily an obstructive nature.
I was excited to get this Aircurve ASV machine to try vs the Airsense 10 that preceded it very strongly sensing that I am dealing with "Mixed" or "Complex Apnea" I'd like your deeper considerations in light of this how that I might pursue a broader and deeper understanding of aspects of the graphs such as Flow Limitations, so I can continue to improve my life further. as regards how all the components might be working together and how this might be reflected in closeups of my sleep data.
I Had an emergency tracheotomy put in at age 2 due to a glue ingestion incident that caused Bilateral Vocal Fold Paresis. My ENT observed me over an 8 year period hoping to see flickers of Vocal Cord movement enough to breathe on my own, and at age 10, the tube was removed and then surgically repaired. I've lived with a fixed airway all my life and my current ENT says "one moves a little and the other a bit more" but as a whole they operate at a 5% of normal level. My last sleep DR. had a chip on his shoulder due to my confidence on my history and flatly told me "My Vocal cords are not paralyzed because I can say EEEEEE". I was referred to him by the ENT who regularly scopes my cords. He said several other non facts that day and I have never seen a "sleep specialist" since. I learned how to set my settings from this group 11 years ago.
I appeared to sleep well as a child but now that I think of it, I was the first to conk out hard as soon as it got dark, and the first to wake up in the family. I would often wake the family with my gasping in the night and of course couldn't run without difficulty At 21, I visited my dutiful ENT and he strongly advised I try an experimental surgery that wires a nerve from a neck muscle to the cords and I might learn to trigger activate it to open the cords wider, but after I woke up the surgeon said my cords "were too rigid" for this to have worked in my case. In my 30's I saw an ENT who did an Arytnoidectomy which was to open up some space via laser on the Arytnoids which is a part of the Vocal cords. At the time it didn't seem to allow me to feel much difference and I did trade the ability to yell with any volume for the effort, however later it did seem to allow me to breathe through that small increased space when I had laryngitis as not much air passes through passed the cords.
After a rollover auto accident 25 years ago I stopped being able to go or remain asleep and have been working on that ever since. I take a volly of mostly non medicines to get to sleep and to stay there as long as possible. The spinal cord was injured in a way that there is now a hole or cavity the runs nearly the whole length INSIDE and is filled with increasing cerebro spinal fluid with a one way (in) valve and has been slowly crushing my cord ever since.
The good news,, it happens slowly and symmetrically so I have learned self treatments to stay upright, talk, and even sleep, but I'm "pretty sure" I have centrals, obstructives, periodic breathing, shallow breathing, and a slow respiration rate of 10. It was 4 rr and thready until I took myself off the "sleep med" and substituted to something else. Interesting thing is,,,, the pulmonologist who regularly monitored me NEVER considered that my slow thready RR could have been the medicine commonly known to "decrease respiration drive".
I'll include my latest sleep graph which shows a 3.71 AHI 25 hypopneas and 10 Unclassified Apneas with settings of EPAP MIN 7.4 EPAP MAX 15 PS MIN 2 PS MAX 15 and would be glad to provide closeups of desired sections of specific graphs and time periods that we might see something no Dr or DME will acknowledge that might lead me further in a direction that helps me to sleep and breathe better based on a perspective utilizing any of the saga details above as far as speculation on my likely real world physicality and how it affects me and what we can do about it. For instance, since my vocal cords are always restricted how does the machine objectively see this if at all in the form of data esp as it needs a baseline to compare to for a nights sleep? Pre auto accident I breathed at a normal rate and with a normal drive for respiration in and out. I think I love this ASV machine because I feel good when in sync with it as I feel it increasing my inspirations. That in itself is very calming which leaves me more receptive to sleep.
As I do have diffuse though not complete paralysis, typing is slow so know I am doing my best to respond.
Continuing ASVAuto Mode,, starting MIN EPAP 5 MAX EPAP 15 MIN PS 3 MAX PS 15 then moving EPAP MIN to 6 then 7 now 7.4 and last nights AHI at 3.71 with 25 Hypopneas and 10 UA's. The UA's went down some after wearing the Soft Collar. and I am more consistently at or below 5 AHI. We have clearly made progress, but I suspect I must now introduce other aspects of my hampered respiratory situation so you technical wizards can provide what the sleep doc system has never acknowledged beyond mild to moderate sleep Apnea of primarily an obstructive nature.
I was excited to get this Aircurve ASV machine to try vs the Airsense 10 that preceded it very strongly sensing that I am dealing with "Mixed" or "Complex Apnea" I'd like your deeper considerations in light of this how that I might pursue a broader and deeper understanding of aspects of the graphs such as Flow Limitations, so I can continue to improve my life further. as regards how all the components might be working together and how this might be reflected in closeups of my sleep data.
I Had an emergency tracheotomy put in at age 2 due to a glue ingestion incident that caused Bilateral Vocal Fold Paresis. My ENT observed me over an 8 year period hoping to see flickers of Vocal Cord movement enough to breathe on my own, and at age 10, the tube was removed and then surgically repaired. I've lived with a fixed airway all my life and my current ENT says "one moves a little and the other a bit more" but as a whole they operate at a 5% of normal level. My last sleep DR. had a chip on his shoulder due to my confidence on my history and flatly told me "My Vocal cords are not paralyzed because I can say EEEEEE". I was referred to him by the ENT who regularly scopes my cords. He said several other non facts that day and I have never seen a "sleep specialist" since. I learned how to set my settings from this group 11 years ago.
I appeared to sleep well as a child but now that I think of it, I was the first to conk out hard as soon as it got dark, and the first to wake up in the family. I would often wake the family with my gasping in the night and of course couldn't run without difficulty At 21, I visited my dutiful ENT and he strongly advised I try an experimental surgery that wires a nerve from a neck muscle to the cords and I might learn to trigger activate it to open the cords wider, but after I woke up the surgeon said my cords "were too rigid" for this to have worked in my case. In my 30's I saw an ENT who did an Arytnoidectomy which was to open up some space via laser on the Arytnoids which is a part of the Vocal cords. At the time it didn't seem to allow me to feel much difference and I did trade the ability to yell with any volume for the effort, however later it did seem to allow me to breathe through that small increased space when I had laryngitis as not much air passes through passed the cords.
After a rollover auto accident 25 years ago I stopped being able to go or remain asleep and have been working on that ever since. I take a volly of mostly non medicines to get to sleep and to stay there as long as possible. The spinal cord was injured in a way that there is now a hole or cavity the runs nearly the whole length INSIDE and is filled with increasing cerebro spinal fluid with a one way (in) valve and has been slowly crushing my cord ever since.
The good news,, it happens slowly and symmetrically so I have learned self treatments to stay upright, talk, and even sleep, but I'm "pretty sure" I have centrals, obstructives, periodic breathing, shallow breathing, and a slow respiration rate of 10. It was 4 rr and thready until I took myself off the "sleep med" and substituted to something else. Interesting thing is,,,, the pulmonologist who regularly monitored me NEVER considered that my slow thready RR could have been the medicine commonly known to "decrease respiration drive".
I'll include my latest sleep graph which shows a 3.71 AHI 25 hypopneas and 10 Unclassified Apneas with settings of EPAP MIN 7.4 EPAP MAX 15 PS MIN 2 PS MAX 15 and would be glad to provide closeups of desired sections of specific graphs and time periods that we might see something no Dr or DME will acknowledge that might lead me further in a direction that helps me to sleep and breathe better based on a perspective utilizing any of the saga details above as far as speculation on my likely real world physicality and how it affects me and what we can do about it. For instance, since my vocal cords are always restricted how does the machine objectively see this if at all in the form of data esp as it needs a baseline to compare to for a nights sleep? Pre auto accident I breathed at a normal rate and with a normal drive for respiration in and out. I think I love this ASV machine because I feel good when in sync with it as I feel it increasing my inspirations. That in itself is very calming which leaves me more receptive to sleep.
As I do have diffuse though not complete paralysis, typing is slow so know I am doing my best to respond.
