3 ms·

The only reason why CPAP has such abysmal failure rates, is because followup is an absolute joke. Patients are titrated in a sleep centre, typically for one nig

by elric 3y ago

The only reason why CPAP has such abysmal failure rates, is because followup is an absolute joke. Patients are titrated in a sleep centre, typically for one night, and are then sent home with a machine, probably the shittiest mask the sleep centre had on hand, and a kick out the door. With some luck, patients have to come in once a year, usually to prove that their therapy is compliant with whatever harebrained scheme their insurance has set up. If they're really lucky, the physician will actually look at the machine's data, and if they really strike gold, they might even adjust therapy as needed. One initial visit, then once a year. For something you have to wear every night for the rest of your life. It's a joke. Everything else, you'll have to figure out on your own. Is it any wonder people give up? They're likely on the wrong pressure, using the least comfortable mask, and have no idea how to make things better. It's a good thing there are resources like Apneaboard [1], Lanky Lefty's youtube channel [2], and software like Oscar [3] to help people out. If these didn't exist, failure rates would be even higher. And if the medical industrial complex would get their heads out of their arses and actually tried to help patients, compliance would be through the roof. [1] https://duckduckgo.com/?t=ffab&q=apneaboard&ia=web https://duckduckgo.com/?t=ffab&q=apneaboard&ia=web [2] https://www.youtube.com/@Freecpapadvice/videos https://www.youtube.com/@Freecpapadvice/videos [3] https://www.sleepfiles.com/OSCAR/ https://www.sleepfiles.com/OSCAR/

Aurornis 3y ago
I know some medical professionals in this domain who would disagree with your assessment. The hardest part is convincing patients to come back for followups and to comply with treatment. Even my primary care doctor said he has abysmal compliance rates with apnea treatment because so many people decide that wearing any device every night is too much to ask. I half suspect that apnea is being diagnosed so aggressively that people with even mild apnea are getting treatment. This would explain why patients are willingly giving up a treatment that is life changing for the better in patients who are suffering severe symptoms.
- elric 3y ago
  That's a catch-22, and it's exactly why followup is important. And why physicians should talk to patients, instead of just sending them on their merry way with a cheap CPAP and a shitty mask. "Here's a shitty mask and some random pressure, good luck, and remember to use it for 4+ hours each night and byebye." If you're unfortunate enough to require a stoma, they don't just randomly attach a bag and send you home. You're sent to a stoma nurse. You're educated on the life changing effects of having to use a stoma. Your nurse will help you find a type of bag that's right for you and can help you deal with complications. But with OSA, we slap a mask on people and don't even tell them that there are dozens of kinds. Now, I'm sure this all depends heavily on where you are, how shitty the healthcare system is over there, and even who you see at which sleep centre. But in general, CPAP would be very well tolerated if we could help people to optimize their therapy.
  - t-writescode 3y ago
    Honestly, I'm very sorry that you've hard a horrible experience with this. My sleep analysis itself was 2 days worth of data that the doctor reviewed. I came in .... the next day? Later on in the day of turning in my at-home test? I forget. Anyway. My CPAP machine came in about a week later; and I had a full hour or so visit with the doctor as he described each individual step, and we tested out a TON of different masks. I had a follow up visit after ... not very long(?) where we reviewed a different couple of masks because the first one wasn't working. We had another officially scheduled meeting after like 3 months? And, now I see them every like 6 months (admittedly, I schedule these meetings), when one of the masks starts to get old, etc. I recently bought a travel CPAP as well, because setting up the CPAP in multiple locations is an absolute pain; but even that was a painless process once I said I wanted it (and paid out of pocket because insurance only covers the big machine). Then again, my sleep apnea is so bad that I would wake up every 1-2 hours at night (I actually use that power to take naps now, lol), and I was starting to fall asleep during everyday activities, so maybe I have better compliance out of the understanding of danger.
    - jnovek 3y ago
      My experience was also very similar to the GP’s, and I’ve gone through it twice, at two different sleep clinics. I definitely don’t have routine follow-ups and the one (singular) follow-up I had was useless. I’ve had to essentially figure it all out on my own. I still find wearing the mask miserable but I don’t have much of a choice because OSA was slowly killing me. You were lucky to have such attentive care! I wish I could find the same.
2devnull 3y ago
[flagged]
- jnovek 3y ago
  While losing weight can improve OSA, studies have shown that, in most patients, it does not eliminate the disorder.
- elric 3y ago
  Ah this old chestnut. It's a load of garbage. CPAP is effective, as supported by many studies and many patients. Obesity, as mentioned elsewhere in this discussion, is a tricky thing in relation to OSA. Having OSA can make you obese. As for allergies, they can certainly worsen symptoms, but they're only a small piece of the puzzle for many people. TL;DR; the science supports CPAP.
ShakataGaNai 3y ago
Yup. This was my experience, more or less. I was lucky enough to do an "at home" test, and so I wasn't given whatever they had on-hand. But when I was prescribed a CPAP the adventure began... First the insurance adventure. They wanted to rent me a machine at rates that qualify at rates that would violate the geneva convention for war crimes. $327 for the 1st month. $50/mo for the next 10 months. Then I'd be eligible to buy the unit for some unspecified price. Total of AT LEAST $827 in rental fees PLUS whatever the sale cost was. Told them to fluff off and bought a top-of-the-line unit online for $499. Did my research and got the mask that had the best reviews for someone like myself. In advance, I had done a little research about CPAP's but I had no realidea what to expect. When I met with the sleep doctor, when he prescribed me the CPAP, he asked if I had any questions. I told him directly, "I don't really know much about them, what should I know?". You'd think whatever spiel he gave me would be a solid basis for life with a CPAP? Hah. Did my own research on how to get comfortable and used to using it. First night I use it, I wake up in the morning and my chest is ON FIRE. Fortunately I didn't jump directly to heart attack, which apparently a lot of people do. Turns out my chest muscles were just sore - super duper common. A side effect almost everyone has the first few times they use a CPAP. Guess what my doctor DIDN'T Tell me about? And that about summarizes how useful my doc was. My Primary Care was way more useful than the sleep doctor. But I never tolerated the CPAP well. Because I'm technical, I had OSCAR pulling data the very first night. Reviewed it every day, learned how to get into the CPAP service menu and make adjustments to the system. Still had problems with it and eventually gave up using it. (Note: I did have heated and humidified, played with those settings a lot. Tried several different masks. Putting the mask on or keeping it on wasn't the issue, my body would just freak out in the middle of the night - every night, when wearing it. Even after weeks of trying. My sleep was worse with the mask than without.) You know who I never heard from again? The sleep doc. It's been 3 years (almost to the day) since I got the CPAP and they've never contacted me. Could I have reached out to them? Yes, but what good were they? They didn't set me up for success. They didn't follow up even one. Their use was to write me a prescription and that's it.

by elric 3y ago

Aurornis 3y ago

I know some medical professionals in this domain who would disagree with your assessment. The hardest part is convincing patients to come back for followups and to comply with treatment. Even my primary care doctor said he has abysmal compliance rates with apnea treatment because so many people decide that wearing any device every night is too much to ask. I half suspect that apnea is being diagnosed so aggressively that people with even mild apnea are getting treatment. This would explain why patients are willingly giving up a treatment that is life changing for the better in patients who are suffering severe symptoms.

elric 3y ago
That's a catch-22, and it's exactly why followup is important. And why physicians should talk to patients, instead of just sending them on their merry way with a cheap CPAP and a shitty mask. "Here's a shitty mask and some random pressure, good luck, and remember to use it for 4+ hours each night and byebye." If you're unfortunate enough to require a stoma, they don't just randomly attach a bag and send you home. You're sent to a stoma nurse. You're educated on the life changing effects of having to use a stoma. Your nurse will help you find a type of bag that's right for you and can help you deal with complications. But with OSA, we slap a mask on people and don't even tell them that there are dozens of kinds. Now, I'm sure this all depends heavily on where you are, how shitty the healthcare system is over there, and even who you see at which sleep centre. But in general, CPAP would be very well tolerated if we could help people to optimize their therapy.
- t-writescode 3y ago
  Honestly, I'm very sorry that you've hard a horrible experience with this. My sleep analysis itself was 2 days worth of data that the doctor reviewed. I came in .... the next day? Later on in the day of turning in my at-home test? I forget. Anyway. My CPAP machine came in about a week later; and I had a full hour or so visit with the doctor as he described each individual step, and we tested out a TON of different masks. I had a follow up visit after ... not very long(?) where we reviewed a different couple of masks because the first one wasn't working. We had another officially scheduled meeting after like 3 months? And, now I see them every like 6 months (admittedly, I schedule these meetings), when one of the masks starts to get old, etc. I recently bought a travel CPAP as well, because setting up the CPAP in multiple locations is an absolute pain; but even that was a painless process once I said I wanted it (and paid out of pocket because insurance only covers the big machine). Then again, my sleep apnea is so bad that I would wake up every 1-2 hours at night (I actually use that power to take naps now, lol), and I was starting to fall asleep during everyday activities, so maybe I have better compliance out of the understanding of danger.
  - jnovek 3y ago
    My experience was also very similar to the GP’s, and I’ve gone through it twice, at two different sleep clinics. I definitely don’t have routine follow-ups and the one (singular) follow-up I had was useless. I’ve had to essentially figure it all out on my own. I still find wearing the mask miserable but I don’t have much of a choice because OSA was slowly killing me. You were lucky to have such attentive care! I wish I could find the same.

2devnull 3y ago

[flagged]

jnovek 3y ago
While losing weight can improve OSA, studies have shown that, in most patients, it does not eliminate the disorder.
elric 3y ago
Ah this old chestnut. It's a load of garbage. CPAP is effective, as supported by many studies and many patients. Obesity, as mentioned elsewhere in this discussion, is a tricky thing in relation to OSA. Having OSA can make you obese. As for allergies, they can certainly worsen symptoms, but they're only a small piece of the puzzle for many people. TL;DR; the science supports CPAP.

ShakataGaNai 3y ago

Yup. This was my experience, more or less. I was lucky enough to do an "at home" test, and so I wasn't given whatever they had on-hand. But when I was prescribed a CPAP the adventure began... First the insurance adventure. They wanted to rent me a machine at rates that qualify at rates that would violate the geneva convention for war crimes. $327 for the 1st month. $50/mo for the next 10 months. Then I'd be eligible to buy the unit for some unspecified price. Total of AT LEAST $827 in rental fees PLUS whatever the sale cost was. Told them to fluff off and bought a top-of-the-line unit online for $499. Did my research and got the mask that had the best reviews for someone like myself. In advance, I had done a little research about CPAP's but I had no realidea what to expect. When I met with the sleep doctor, when he prescribed me the CPAP, he asked if I had any questions. I told him directly, "I don't really know much about them, what should I know?". You'd think whatever spiel he gave me would be a solid basis for life with a CPAP? Hah. Did my own research on how to get comfortable and used to using it. First night I use it, I wake up in the morning and my chest is ON FIRE. Fortunately I didn't jump directly to heart attack, which apparently a lot of people do. Turns out my chest muscles were just sore - super duper common. A side effect almost everyone has the first few times they use a CPAP. Guess what my doctor DIDN'T Tell me about? And that about summarizes how useful my doc was. My Primary Care was way more useful than the sleep doctor. But I never tolerated the CPAP well. Because I'm technical, I had OSCAR pulling data the very first night. Reviewed it every day, learned how to get into the CPAP service menu and make adjustments to the system. Still had problems with it and eventually gave up using it. (Note: I did have heated and humidified, played with those settings a lot. Tried several different masks. Putting the mask on or keeping it on wasn't the issue, my body would just freak out in the middle of the night - every night, when wearing it. Even after weeks of trying. My sleep was worse with the mask than without.) You know who I never heard from again? The sleep doc. It's been 3 years (almost to the day) since I got the CPAP and they've never contacted me. Could I have reached out to them? Yes, but what good were they? They didn't set me up for success. They didn't follow up even one. Their use was to write me a prescription and that's it.