04-04-2025, 02:28 PM
(This post was last modified: 04-04-2025, 02:30 PM by thehighestlight. Edited 1 time in total.)
Autism and CPAP, seeking referral for clinician in Los Angeles/SoCal
Hi there, I'm V! I hope that this is the right forum/subforum, and that any mistakes will be met with patience from moderation, as I am on the autism spectrum and feeling a bit pressed for help.
I have been desperately trying for the last five years to find a sleep disorder specialist, not a pulmonologist, not a DDS, a doctor who specializes in disordered sleep, here in Los Angeles. I am a disabled woman in her thirties, I'm relatively active, healthy habits, at a comfortable and healthy weight for my height and age (tho I know apnea impacts ppl from all different abilities and body types, just thought it might be relevant), and I have been struggling with diagnosis/treatment for mild apnea for many years. I am on the autism spectrum, have significant issues with chronic pain that impact sleep and necessitate a specialized sleep surface.
In 2020, I had a sleep study ordered but was unable to complete in clinic due to autism sensory issues with being connected to monitoring equipment, significant issues with the sleep surface in their clinic causing unbearable pain, and anxiety about the test results. Normally in a situation like this, I would take something to help me sleep, but was not given the option, and the pain from their awful sleep number bed was too much to tolerate. I was given an at home test, which, while limited in scope, did reveal mild-moderate central and obstructive apnea events. I was prescribed CPAP but all of this was done through the sleep clinic location itself as a referral from my primary, and the CPAP was provided through a DME supplier. The DME supplier had monitoring software in the unit, and i quickly found myself in a situation where I was not able to comply with therapy due to autism sensory issues and anxiety making it feel as though i was suffocating and getting severe panic attacks, removing CPAP in the night mere minutes after falling asleep with it on, and I quickly found myself being hounded harassed and threatened by the supplier on a daily basis because I was unable to comply, but they were completely unwilling and unable to offer guidance on HOW to comply with therapy given my sensory issues. Literally no support whatsoever.
I have taken these test results to several clinicians through UCLA, USC, etc trying to get patient help and guidance with absolutely no luck. I've encountered everything BUT the help I need in the last five years as I am constantly waking up with headaches and gasping for air in the middle of the night. I have been told the one successful test I had was out of date, given other studies with faulty equipment, prohibited from taking sleep aids, threatened with cash prices for noncompliance with testing, all while truly struggling to get ANY sort of help.
So for the past five years, I have been raw dogging my sleep apnea with no real idea about whether or not my apnea is mostly central, obstructive or mixed. The latter in my suspicion. I use a chin strap at night bc my mouth tends to fall open and I wake up with my throat and tongue raw, my voice gone, my lips chapped, etc and it does help somewhat.
I am seeking two things.
One, I need a competent SLEEP DISORDER SPECIALIST, not a pulmonologist, not a DDS, not an intern, not a nurse, not a primary care physician, a SLEEP DISORDER SPECIALIST in los angeles or southern california, preferably a woman, who is patient and kind and will take some extra time with me. Most importantly, I am looking for someone who is not part of some racket to hustle CPAP machines through a DME supplier with no support or assistance.
Two, I need some advice from other folks with autism sensory issues on how to comply with therapy without feeling like you are being suffocated. Any recommendations on machines or mask types or guidance on things to consider or even alternatives to CPAP would be greatly appreciated. I am willing to get an implant if it comes to that, but I don't know what it will feel like when it's installed, whether or not it will bother me more than CPAP, etc. I have been told that I am not a candidate for the dental appliances, having significant jaw and neck issues.
I know this is a lot, but I would be so grateful for any help and guidance. I am suffering and I cannot seem to find the help i need and this issue, as serious as it is, really is a drop in the bucket compared to the enormity of what I am already dealing with navigating chronic health issues and fighting for other kinds of care and picking up slack when my healthcare team of over a dozen specialists and generalists or either of my two insurance companies drops the ball, loses me in their system, stops covering my meds, or any of the other delightfully inventive ways that they keep coming up with to put me through the meat grinder.
Thank you in advance for your thoughtful, caring replies. You are appreciated.
Blessed Be.
lil Miss V
I have been desperately trying for the last five years to find a sleep disorder specialist, not a pulmonologist, not a DDS, a doctor who specializes in disordered sleep, here in Los Angeles. I am a disabled woman in her thirties, I'm relatively active, healthy habits, at a comfortable and healthy weight for my height and age (tho I know apnea impacts ppl from all different abilities and body types, just thought it might be relevant), and I have been struggling with diagnosis/treatment for mild apnea for many years. I am on the autism spectrum, have significant issues with chronic pain that impact sleep and necessitate a specialized sleep surface.
In 2020, I had a sleep study ordered but was unable to complete in clinic due to autism sensory issues with being connected to monitoring equipment, significant issues with the sleep surface in their clinic causing unbearable pain, and anxiety about the test results. Normally in a situation like this, I would take something to help me sleep, but was not given the option, and the pain from their awful sleep number bed was too much to tolerate. I was given an at home test, which, while limited in scope, did reveal mild-moderate central and obstructive apnea events. I was prescribed CPAP but all of this was done through the sleep clinic location itself as a referral from my primary, and the CPAP was provided through a DME supplier. The DME supplier had monitoring software in the unit, and i quickly found myself in a situation where I was not able to comply with therapy due to autism sensory issues and anxiety making it feel as though i was suffocating and getting severe panic attacks, removing CPAP in the night mere minutes after falling asleep with it on, and I quickly found myself being hounded harassed and threatened by the supplier on a daily basis because I was unable to comply, but they were completely unwilling and unable to offer guidance on HOW to comply with therapy given my sensory issues. Literally no support whatsoever.
I have taken these test results to several clinicians through UCLA, USC, etc trying to get patient help and guidance with absolutely no luck. I've encountered everything BUT the help I need in the last five years as I am constantly waking up with headaches and gasping for air in the middle of the night. I have been told the one successful test I had was out of date, given other studies with faulty equipment, prohibited from taking sleep aids, threatened with cash prices for noncompliance with testing, all while truly struggling to get ANY sort of help.
So for the past five years, I have been raw dogging my sleep apnea with no real idea about whether or not my apnea is mostly central, obstructive or mixed. The latter in my suspicion. I use a chin strap at night bc my mouth tends to fall open and I wake up with my throat and tongue raw, my voice gone, my lips chapped, etc and it does help somewhat.
I am seeking two things.
One, I need a competent SLEEP DISORDER SPECIALIST, not a pulmonologist, not a DDS, not an intern, not a nurse, not a primary care physician, a SLEEP DISORDER SPECIALIST in los angeles or southern california, preferably a woman, who is patient and kind and will take some extra time with me. Most importantly, I am looking for someone who is not part of some racket to hustle CPAP machines through a DME supplier with no support or assistance.
Two, I need some advice from other folks with autism sensory issues on how to comply with therapy without feeling like you are being suffocated. Any recommendations on machines or mask types or guidance on things to consider or even alternatives to CPAP would be greatly appreciated. I am willing to get an implant if it comes to that, but I don't know what it will feel like when it's installed, whether or not it will bother me more than CPAP, etc. I have been told that I am not a candidate for the dental appliances, having significant jaw and neck issues.
I know this is a lot, but I would be so grateful for any help and guidance. I am suffering and I cannot seem to find the help i need and this issue, as serious as it is, really is a drop in the bucket compared to the enormity of what I am already dealing with navigating chronic health issues and fighting for other kinds of care and picking up slack when my healthcare team of over a dozen specialists and generalists or either of my two insurance companies drops the ball, loses me in their system, stops covering my meds, or any of the other delightfully inventive ways that they keep coming up with to put me through the meat grinder.
Thank you in advance for your thoughtful, caring replies. You are appreciated.
Blessed Be.
lil Miss V
