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Do we know how many people don't/can't continue CPAP?
#31
RE: Do we know how many people don't/can't continue CPAP?
On top of all those who try and fail, there are those who won't even get tested. My brother-in-law for one. He was undergoing a complex medical assessment and when they suggested a sleep study, he replied, "why bother, it's too much trouble".

For me, I am happy there is a physical intervention that doesn't involve taking drugs. Particularly now with all the problems with drug manufacturing and contamination issues.
Sleep-well
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#32
RE: Do we know how many people don't/can't continue CPAP?
In my own family, my dad has had OSA for years, won't treat it because he sees the difficulty the rest of us have had in dealing with CPAP.  And it "doesn't bother him", although he is in his mid-sixties and needs multiple naps per day, and we witness him not breathing all the time.  His own brother died of a heart attack, of which severe, untreated OSA was part of the problem.  He couldn't adapt to the CPAP.
  
My mom worked for almost 2 years to find a mask that she could deal with having on her face for 8 hours per night, and still there is alot of large leaks.  If it weren't for the fact the doctor scared her and told her that she was going to have a stroke (O2 levels around 70%), and my sister and myself constantly helping her with adjusting the machine, she would never have kept up with it.

My MIL has had severe insomnia for 40 years, and had a stroke a few years ago.  Had a sleep study and they told her she needed to use CPAP, but she couldn't deal with the anxiety and difficulty of adapting to the mask and medicare took it back.  She is still convinced there is nothing wrong with her breathing, despite a clear sleep study.
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#33
RE: Do we know how many people don't/can't continue CPAP?
Tarah, these are heart-breaking stories. How I wish we had a more humane way of helping people toward life-long, and life-saving, CPAP treatment.
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#34
RE: Do we know how many people don't/can't continue CPAP?
I am actually very hopeful!  My own little kids have a high chance of apnea in their lives, but they won't have to wait and suffer for years or decades.  Their dad and I, and their doctor and dentist, are watching for if and when they show signs of apnea and they will get put on cpap right away.  Not a big deal, I hope. 

There's also a ton of $$ to be made in solving apnea with a technological solution that doesn't involve a machine on someone's face all night, so I do believe that we will have a much easier treatment in the next few years.
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#35
RE: Do we know how many people don't/can't continue CPAP?
I think Opal Rose has hit the nail right on the head in that the mask is the biggest issue. I know that I would struggle initially with a full face mask but having used xPAP for 4 years now I'd get used to it. If you haven't had that experience then getting used to it would be very hard.

The next factor is therapy pressure and for me it was exhaling that I found difficult at first. EPR is vital for anyone new to therapy so an auto machine is mandatory. This is where I question the ethics of both Resmed and Respironics with their set level bricks. They know that auto is the key but producing machines like this smacks of price gouging.

Finally the medical industry themselves must take a smack on the wrist (or something even more violent). After diagnosis and titration, effective follow up and remediation is virtually non-existent.

The bottom line is that I can go into a DME and effectively argue about nearly all aspects of OSA and it's therapy. The people on the front desk are usually clueless and get quite miffed when I ask them questions that they could never answer. If I ask to see someone more conversant with OSA I usually get a technician who knows even less than the person on the front desk. There don't seem to be any doctors in house. Funny that!

The advantage of this approach is that I invariably get what I want. There is nothing more embarrassing than having customers listening to someone like me calling out the 'expert'. They back off in a hurry. Yes, they don't like me but I don't give a rats as I'm there to make sure I get what is important for my health.
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#36
RE: Do we know how many people don't/can't continue CPAP?
(11-25-2019, 06:39 AM)LeonardoDR Wrote: This board is evidence of just how complicated compliance can be.  Most people don't find their way here or, even if they do, don't have the wherewithal to go through all it takes to make CPAP therapy work.  There are so many posts here, and most of them are quite detailed.  That's why non-compliance is such a big issue.

And most of them have impaired cognition due to sleep deprivation. That makes it all the harder to navigate the complexities. But generally speaking a person can start their own thread and receive a lot of easy to follow instructions. They just have to have the desire.

I can't understand how someone can be aware of the risks of sleep apnea and still refuse to comply.
Sleepster

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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#37
RE: Do we know how many people don't/can't continue CPAP?
(11-26-2019, 10:12 AM)Sleepster Wrote:
(11-25-2019, 06:39 AM)LeonardoDR Wrote: This board is evidence of just how complicated compliance can be.  Most people don't find their way here or, even if they do, don't have the wherewithal to go through all it takes to make CPAP therapy work.  There are so many posts here, and most of them are quite detailed.  That's why non-compliance is such a big issue.

And most of them have impaired cognition due to sleep deprivation. That makes it all the harder to navigate the complexities. But generally speaking a person can start their own thread and receive a lot of easy to follow instructions. They just have to have the desire.

I can't understand how someone can be aware of the risks of sleep apnea and still refuse to comply.

Maybe because the act of doing nothing seems easier than doing something. Besides, I think there's a stigma associated with apnea that has been ignorantly propagated that those with apnea are odd or bad in some way. My aunt for example gets angry if I suggest she snores and may have apnea.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#38
RE: Do we know how many people don't/can't continue CPAP?
Unfortunately most of it comes down to motivation and support. Your doctor tells you to exercise more and lose weight... yeah, yeah. Then you meet someone who you are crazy about and loves to hike, bike, and is really active. Now you actually have a reason to exercise and lose that weight. Unfortunately, that person also loves eat high calorie meals at restaurants.

Unless people are faced with an immediate issue, and that person believes it will lead to their imminent demise, health is generally not a reason to make lifestyle changes. I think most people believe that they are doing okay. People will take meds for health issues, but they are not ready to do "that" becauase they are little tired; even if they admit they probably should. They kick the can and things get worse, their sleep issues become more complex, so they reluctantly give it a try.

I wonder how many people are on CPAP for the sole reason of being able to do something they love to do. Motivation is probably the greatest driver for success. Having a real reason behind doing anything we don't want to do in life is what keeps us grinding away. Unfortunately, there are times when you just can't will something into existence. And just as unfortunate is that there is no place in healthcare for that person to turn.

Forums like this one probably help more people than most sleep doctors out there. The people who read story after story and continue to look at charts are angels from God. I am so impressed.

John
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#39
RE: Do we know how many people don't/can't continue CPAP?
It's not natural to sleep with something strapped to your head and blowing air into your sinuses.  When I was diagnosed (October 2019) I was honestly shocked.  I suffered chronic insomnia for many years and sleep studies were suggested by several drs.  I declined every time because I am such a fussy sleeper I knew that I would not sleep in a strange setting with wires and machines and it would be a complete waste.  Besides, the only thing a sleep study is for is to diagnose sleep apnea and I knew I didn't have that (!).  Finally, I agreed because the insomnia was getting worse and I wanted to be as compliant as I could so that the dr. would keep prescribing meds.  

I was still in shock (and the constant fog of sleep deprivation) when I met with the DME to pick up my machine and assorted attachments.  I just couldn't imagine how I was going to do this.  I need perfect conditions to get even minimal sleep - total darkness, complete quiet (except for my white noise), just the right temp, bedding, etc.  Now I am being asked to strap a harness on my head, a chin strap and nasal pillows to blow in my nostrils.  Yeah, right.  

All that being said, it wasn't all that hard to Google "Cpap support" and find a list of groups, including this wonderful place.  The internet is great for things like this.  Most people have access and if they really want/need to make it work, they can FIND the support and answers they need.  Few are lucky to have a DME or sleep doc that will do the level of support and follow-up necessary for such a major lifestyle transition.  Maybe it was to my advantage that I was used to struggling to sleep and I was ready for my next challenge, the cpap.

I never knew anything about sleep apnea, other than the myth that only overweight men have it (hence, why I was sure that a relatively slim woman like me would NOT ).  I've learned a lot since my diagnosis and knowing how prevalent it really is, wouldn't it be wonderful to have more general public education/acceptance and PSAs?
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#40
RE: Do we know how many people don't/can't continue CPAP?
Like you, suzeecat, I'm a fairly slim woman and a very fussy sleeper. My biggest motivation to get tested and start treatment was how lousy I was feeling during the day: sleepy, stupid, pessimistic, irritable. My early experiences with treatment were lousy, but Sleepyhead/Oscar and this site turned things around for me. I still have a ways to go, and at this point chronic pain is the biggest obstacle to full recovery. But I'm working on it!

After I started using a machine, I was amazed to realize, through casual conversation, how many people around me are doing the same. Three old friends, two neighbors on my block, and now one co-worker. I'm not sure why people don't talk about it more, since everyone talks about their reflux and bad eyesight and back problems.
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