Lack of OSA Public Awareness

Negative attitudes about the mask and the machine stand out in my mind.
TV and film seem to only portray cpap as a comedy gimmick, to reinforce the idea that someone is FAT and unhealthy.
Social media is an important way to influence people.
Memes need to be created to get people to consider new attitudes about cpap.
CPAP: BONDAGE, BUT IN A GOOD WAY
It is time to upload and forward images of young, attractive sexy people in masks.

I didn't mean to say that pulse ox should be the Only determining factor. I stated in my first post that I knew not all apnea issues present with desats. I would like to see everyone get tested with recording pulse ox but with the understanding that just because you don't have desats doesn't mean your in the clear. But for those people who maybe don't have other symptoms or have been managing them for so long that they're not even aware of it. Having a pulse ox test that shows desats would catch them before they get worse or fall through the cracks.

As long as some bureaucracy doesn't form around the use of pulse ox testing as some sort of cheap gold standard. That would be very bad as well because of all the people who have bad apnea with fragmented sleep and other issues but no desats would be overlooked.

I'd like to see pulse ox testing added but with the understanding that a negative reading doesn't mean there isn't a problem. The thing is that the testing device is very cheap relatively speaking as far as medical diagnostic equipment goes and is 100% non evasive. Having everyone use one at least once every 10 or so years would be a good way of catching the apnea cases that do present with desats.

Doctors should automatically suspect SDB in the presence of hypertension, diabetes, a fatty liver, glaucoma, arrhythmia, an excess red blood cell count, and quite a few other things that don't come to mind or I'm not aware of. That's in addition to any other reason stated, not instead of.

chunkyfrog wrote:Negative attitudes about the mask and the machine stand out in my mind.
TV and film seem to only portray cpap as a comedy gimmick, to reinforce the idea that someone is FAT and unhealthy.
Social media is an important way to influence people.
Memes need to be created to get people to consider new attitudes about cpap.
CPAP: BONDAGE, BUT IN A GOOD WAY
It is time to upload and forward images of young, attractive sexy people in masks.

Great idea! I shall do a selfie and upload to Facebook!

Seriously though I agree, social media may be the best way to spread awareness. How can we best do this without scaring the crap out of people though, or sending them down the DeNile River as Pugsy calls it? Any ideas on how and what we should post and ask people to share?

D.H. wrote:Doctors should automatically suspect SDB in the presence of hypertension, diabetes, a fatty liver, glaucoma, arrhythmia, an excess red blood cell count, and quite a few other things that don't come to mind or I'm not aware of. That's in addition to any other reason stated, not instead of.

My cardiologist found that because she suspected so many of her patients had SDB, she set up an arrangement to refer patients to two sleep docs for sleep studies. Obviously, I have no idea how good the sleep docs are but kudos to her for taking this very seriously.

Interestingly, when I needed clearance from her to undergo the Inspire Procedure in 2015, she had never heard of it but due to her extreme curiosity, said she was going to look it up. I found that refreshing.

Unfortunately, I didn't qualify which is a whole other post.

When I told my family physician about my nocturia, he assumed I had BPH and put me on medication for that. A year later, when I had knee replacement surgery, the doctor that did the morning rounds was a pulmonologist that specialised in sleep therapy. The nurses noted I was setting off the blood oxygen alarm at night while sleeping, even though I was using oxygen. When I got out of the hospital, he scheduled me for a sleep study. I am now using a bipap machine. I told my wife that she would stop breathing while sleeping and needed to have a sleep study done. She refused to have one done, saying there was no way she could ever sleep with that thing on her face. When my wife and I had our annual physical last year, I mentioned that my wife would quit breathing while sleeping. Our doctor scheduled her for a sleep study, and she is now using a bipap machine. After about a month of treatment, she admitted it was not as bad as she thought it would be.

There have been some very high profile accidents traced to SDB. Perhaps the most notorious of which is the Exxon Valdez. The captain fell asleep, and large amounts of crude oil spilled into the ocean causing untold damage.

Also, there was a train wreck in Bronx, NY in 2014 and another train wreck in Hoboken, NJ - less than twenty miles apart - in 2016. Both of these incidents were caused by SDB, according to the official reports.

There was publicity about the events at the time they happened, but relatively little follow-up - at least in the public arena - after the all hoopla died down.

D.H. wrote:There have been some very high profile accidents traced to SDB. Perhaps the most notorious of which is the Exxon Valdez. The captain fell asleep, and large amounts of crude oil spilled into the ocean causing untold damage.

Also, there was a train wreck in Bronx, NY in 2014 and another train wreck in Hoboken, NJ - less than twenty miles apart - in 2016. Both of these incidents were caused by SDB, according to the official reports.

There was publicity about the events at the time they happened, but relatively little follow-up - at least in the public arena - after the all hoopla died down.

Totally wrong info the Exxon Valdez - Captain was drinking and turned control of the vessel over to third mate. Third mate had been on duty for at least 22 hours and reportedly had only a cap nap in the last 16 hours. IT was not SDB but sleep derivation that was at fault for this disaster. Although there are similarities, SDB and sleep depravation are very different. I believe that confusing the two are one reason for the publics lack of awareness and discounting the seriousness of SDB. Joe Public thinks that people are just voluntarily not sleeping a self caused condition. SDB is involuntary and a disease.

Would this ResMed presentation be a good thing to share on social media?

https://youtu.be/-gie2dhqP2c

I did find a reference confirming that Sleep Apnea was contributory to the the Exxon Valdez disaster. This reference does appear to be reliable. Certainly, it was primary in the recent New York and New Jersey train disasters.

Link ===> https://www.michiganheadandneck.com/sleep-apnea/

A few years ago I felt compelled that I should be more open about my sleep disorders outside this circle. Posted my story in the Notes section of FB. Here's what I said...

When Sleep Is Not So Sweet
September 6, 2012 at 4:58pm
After some brief discussion on another post on the subject of sleep disorders, I felt I needed to be a bit more transparent about my sleep issues, in hopes someone who is affected similarly can be encouraged to do whatever it takes to achieve a better quality, and maybe even quantity, of life. Sleep disorders robbed me of both my mental and physical well being, and eventually, my career.

Dysfuntional sleep can have a myriad of causes - I read at one time that sleep medicine recognizes 80+ disorders. I don't pretend to understand or be informed on many of them. I am quite well informed on Obstructive Sleep Apnea, Restless Leg Syndrome, and Periodic Limb Movement Disorder. Since 1998 I have spent roughly a dozen nights and 3 days in sleep labs trying to address my sleep disorders before they killed me. And no, I'm not exaggerating. And I say roughly partly because I lost count, and partly because those sleep lab times were ROUGH! They are not fun. But when the consequences of not dealing with the issues becomes severe enough, it is worth a miserable night or two if it means potential for long term relief. Being diagnosed with Obstructive Sleep Apnea was not something I wanted to hear. Using a machine and wearing a mask at night was not on my list of desires for my future. But I welcomed the diagnosis in the sense that it helped explain so much of what was wrong in my life and offered hope of undoing some of the damage. OSA is well known to be associated with increased risk of hypertension, diabetes, weight gain, heart attack, enlarged heart, stroke, short term memory loss, automobile accidents, frequent nighttime urination, daytime sleepiness, cognitive impairment ... just to name the ones that readily come to mind.

The damage can accumulate so slowly as to leave one unaware of the subtle changes, often until a health crisis makes the evidence undeniable. Especially in the case of sleep apnea. It's a death of a thousand cuts, except for the occasional unlucky soul for whom it is swift and merciless. I shudder when I hear of people taking sedating meds to sleep without first being sure they don't have sleep apnea. A med that supresses the CNS can compromise the brain's ability to recognize the need for and initiate breathing - not a good combination with repeated breathing obstructions. For some people their oxygen levels drop as low as the 50s during episodes of apnea. In the hospitals they slap oxygen on a person if they drop much below 90. Just because one sleeps through the repeated crises doesn't make it any less dangerous than if they were awake. Tell me, who would allow an intruder to come into their bedroom at night and place a pillow over their face and try to suffocate them repeatedly all night every night and not do something to put a stop to it? That's exactly what sleep apnea does.

The treatment for OSA was not an easy adjustment for me, I often took the mask off in my sleep, felt claustrophic, or just plain HATED it. Been known to throw a mask against the wall in the middle of the night. lol A few months in I even quit, but declining health necessitated I try again. With the right support system, it is now a non-event. Nearly 7 years in I can honestly say it's no big deal. I'm just grateful that so much of my life has improved with - get this --- AIR! How great is that to have something so serious but that just plain AIR fixes it!

I do have other sleep disorders, but unless someone else is dealing with the same issues during sleep and needs info, I'll leave this post as about sleep apnea since that's the one that is the most dangerous and probably most common. At one time I was no longer able to drive safely or even cook by myself. I developed coping strategies that I look back on as laughable. If I was cooking, I'd remove all the chairs from the kitchen and place them backwards in the doorways so I couldn't sit down and fall asleep or leave the room and forget I was cooking. (lol I was a mess!) I couldn't complete a sentence without getting lost, and had to depend on others for so much of my responsibilities. Just let me say that I am now on just a fraction of the meds I was once on for my blood pressure and diabetes, thus I have only a fraction of the side effects meds nearly always cause. I will ever be grateful for advances in the field of sleep medicine. In my dad's era (I'm sure he had it too) one just had to suffer.

For any ladies reading this who feel the stigma of a society that so long has stereotyped OSA as an old fat men's disorder, take comfort that the medical community is increasingly recognizing the error of that thinking. While weight can contribute to sleep apnea, sleep apnea is now known to be a contributor to weight gain, causing dysfunction of metabolism and disregulation of appetite hormones. And a whole lot of trim fit people suffer from OSA due to structures within their mouth and throat. Narrow jaws and inset jawlines are notorious culprits, and these have nothing to do with weight. While the subject does admittedly still feel a bit awkward, I'm historically not one to give a rat's behind what people think of me. Not sure if that's a character strength or weakness.

If your sleep is compromised, especially if you are symptomatic for sleep apnea, whatever has held you back before, please do not let it hold you back any longer. If you have any questions you aren't comfortable discussing publically, feel free to message me.

Whew! I feel better just saying all that. Ok, off my soapbox now.

D.H. wrote:I did find a reference confirming that Sleep Apnea was contributory to the the Exxon Valdez disaster. This reference does appear to be reliable. Certainly, it was primary in the recent New York and New Jersey train disasters.

Link ===> https://www.michiganheadandneck.com/sleep-apnea/

This reference only makes a vague reference to the Exxon Valdez disaster, however no mention of what that link may be. I went to both the State of Alaska' final report on the Spill, and the NTBS report, neither call out SDB or SA as a potential contributor to the disaster. What they do call out is that sleep deprivation due to long shifts and inadequate rest periods and the stresses of port departure activities may have been contributory factors to the performance of the third mate who was piloting the tanker at the time of the grounding. Neither report calls out SA as a potential contributor. Your source just wanted to make SA a "big deal" so they made a not totally uncalled for link to say that sleep deprivation causes bad judgment, and since sleep apnea is a cause of sleep deprivation it can be implicated in any event where poor judgement due to lack of sleep is suspected.

Instead of research--FICTION.

kteague wrote:A few years ago I felt compelled that I should be more open about my sleep disorders outside this circle. Posted my story in the Notes section of FB. Here's what I said...


Whew! I feel better just saying all that. Ok, off my soapbox now. [/i]

That is brilliant and so eloquently written!
It has helped shape some of my own thoughts about SDB and OSA in general.
Thank you so much for sharing

We may all have to branch out and do this if the yellow menace cannot be stopped.
(((Please do not be offended by the racist epithet--unless you are a spammer.)))
In that case, please feel as offended as you like, because it was intended for you.