4 ms·

> But I think sleep apnea is criminally under-discussed and underdiagnosed. I agree that it’s under-diagnosed in people who have it, but it’s actually discusse

> But I think sleep apnea is criminally under-discussed and underdiagnosed. I agree that it’s under-diagnosed in people who have it, but it’s actually discussed very widely across social media and in person. I have some sleep medicine professionals in my extended social circle. It’s common to hear stories of people coming in convinced that they must have sleep apnea after reading about it online, but their sleep studies are nearly perfect. There’s one doctor in my area who opened her own clinic and pushes apnea studies very hard in advertising. Apparently they score tests differently enough that they can find some reason to prescribe CPAPs to almost everyone who comes through her office, which of course they also happily sell. It has gotten bad enough that she’s becoming well known among doctors as someone to avoid for referrals. One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything. If anyone suspects sleep apnea they should definitely look into it, but make sure you’re going to a provider aligned with your best interests.

mola 4y ago
This comment is very important. I wouldn't trust social media reports as a source for understanding prevalence of conditions. The mimetic dynamics can cause severe exaggeratiobs and over representation. Even the thread here can make a large effect on baseless self diagnosis (I'm not doubting the OP) which many actors will happily take advantage of for their own personal gains.
- carlosjobim 4y ago
  Try to compare worst case scenarios of the outcome of these discussions that are unapproved by you personally: 1. Somebody who has sleep apnea but didn't know it until now can get diagnosed and massively improve her life without any negative side effects. 2. Somebody mistakenly thinks they have sleep apnea and might waste some time and a little money until they understand they never had sleep apnea. No other negative side effects.
- Ebree 4y ago
  Nowadays I trust YT more than any doctor around. I find doctors on YT more credible actually. Because they actually serve their viewers, actually addressing their particular conditions, explaing in details. As well as those who fixed their own problems after long struggle. When you watch enough (this mean enough to make you feel older) to understand who you watch, compare opposite views enough and didn't stick to any pharma fakes you find knowledge worth more than efforts put. And later you actually learn reading technical research yourself and differentiating epidemiological crap from actual sound knowledge. If you even aren't sure if you get it completely ( and you obviously should not be sure) thats your starting point to find people (it's plural) who actually understand it. That's how you scale up your way to truth. Or to a cult if you stop too early, you probably shouldn't ever stop, we learn whole life. All for free, except your time. That's the world we live in now. What a beautiful world it would be without all imposed intermediaries payed for wasting our time and keeping us sick. But you learn, so you save on drugs, funding incompetent "experts" and probably premature death. And then you save your family and get mentally and physically healthier children (except if you stop at becoming vegan, then it's opposite of that, and probably you end up in hell, for sure should)
schwartzworld 4y ago
> One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything. Without commenting on the behavior of the doctor in question, I'd like to offer a rebuttal to this point. CPAP is the gold standard for apnea treatment, but there are a lot of reasons people don't stick with treatment. It's hard enough to get used to sleeping with something on your face at night, and even harder if your machine isn't configured to the exact right settings, something that requires experimentation and data. The machine sends telemetry to your doctor, but it's just averages for the night and offers no useful insight. Doctors literally have no tools to help you debug the process. My doctor barely tried. She tossed a few mask samples my way. I really needed support and their office told me that I should see a therapist instead because my insomnia was in my head. I was having less than 5 events per hour with the machine on, who cares if I was waking up choking 3 times a night? I can't fully blame them, because they didn't have any more information to go on. There is an amazing open source application for analyzing the data from your CPAP called OSCAR. The data available to you is quite granular and useful. I didn't go see a therapist, and instead resolved to get to the root of the problem. From start to finish it took me a year to get a full night's sleep with a CPAP, and that was only through learning to read and analyze the data. It was a tremendous effort, and the only reason I didn't give up was because I had just been tired for so many years that there was no other option. CPAP isn't a pill that you can swallow and just start feeling better. My point is just that people not sticking to CPAP is very very common. I'd be curious to see a source linking this to incorrect diagnoses.
- apple4ever 4y ago
  > There is an amazing open source application for analyzing the data from your CPAP called OSCAR. The data available to you is quite granular and useful WHOA! Thank you for this. I will be checking this out now! It's really ridiculous to have all this data and not use it. We pay good money for the device and the doctors, and this data should be investigated.
Llamamoe 4y ago
> but their sleep studies are nearly perfect. This is because most labs only score AHI, often using 4% desat criteria, which underscore prevalence/severity possibly by as much as 80%. Most younger, non-obese female patients fall on the UARS side of the spectrum, with RERA events dominating over apneas and hypopneas- where an older man with 3 AHI might have 6 RDI, an excellent result for their age, it's common for a young person to have 15+ RDI, at which point most people struggle with day-to-day functioning. > One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything. This in no way implies incorrect diagnoses. CPAP dropout rates are 40%+ even in people scored using the least sensitive criteria. CPAP just genuinely sucks, especially for anyone whose nasal breathing is poor. Most people with UARS don't benefit from it at all, but get way better with oral appliances, skeletal treatment, or nasal surgery.
pareidolia 4y ago
> but their sleep studies are nearly perfect. That's because most sleep studies are crap, unfortunately. I only got diagnosed with my 3rd PSG, which included the rare Pes because I insisted on it.
- apple4ever 4y ago
  I really believe that too

mola 4y ago

This comment is very important. I wouldn't trust social media reports as a source for understanding prevalence of conditions. The mimetic dynamics can cause severe exaggeratiobs and over representation. Even the thread here can make a large effect on baseless self diagnosis (I'm not doubting the OP) which many actors will happily take advantage of for their own personal gains.

carlosjobim 4y ago
Try to compare worst case scenarios of the outcome of these discussions that are unapproved by you personally: 1. Somebody who has sleep apnea but didn't know it until now can get diagnosed and massively improve her life without any negative side effects. 2. Somebody mistakenly thinks they have sleep apnea and might waste some time and a little money until they understand they never had sleep apnea. No other negative side effects.
Ebree 4y ago
Nowadays I trust YT more than any doctor around. I find doctors on YT more credible actually. Because they actually serve their viewers, actually addressing their particular conditions, explaing in details. As well as those who fixed their own problems after long struggle. When you watch enough (this mean enough to make you feel older) to understand who you watch, compare opposite views enough and didn't stick to any pharma fakes you find knowledge worth more than efforts put. And later you actually learn reading technical research yourself and differentiating epidemiological crap from actual sound knowledge. If you even aren't sure if you get it completely ( and you obviously should not be sure) thats your starting point to find people (it's plural) who actually understand it. That's how you scale up your way to truth. Or to a cult if you stop too early, you probably shouldn't ever stop, we learn whole life. All for free, except your time. That's the world we live in now. What a beautiful world it would be without all imposed intermediaries payed for wasting our time and keeping us sick. But you learn, so you save on drugs, funding incompetent "experts" and probably premature death. And then you save your family and get mentally and physically healthier children (except if you stop at becoming vegan, then it's opposite of that, and probably you end up in hell, for sure should)

schwartzworld 4y ago

> One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything. Without commenting on the behavior of the doctor in question, I'd like to offer a rebuttal to this point. CPAP is the gold standard for apnea treatment, but there are a lot of reasons people don't stick with treatment. It's hard enough to get used to sleeping with something on your face at night, and even harder if your machine isn't configured to the exact right settings, something that requires experimentation and data. The machine sends telemetry to your doctor, but it's just averages for the night and offers no useful insight. Doctors literally have no tools to help you debug the process. My doctor barely tried. She tossed a few mask samples my way. I really needed support and their office told me that I should see a therapist instead because my insomnia was in my head. I was having less than 5 events per hour with the machine on, who cares if I was waking up choking 3 times a night? I can't fully blame them, because they didn't have any more information to go on. There is an amazing open source application for analyzing the data from your CPAP called OSCAR. The data available to you is quite granular and useful. I didn't go see a therapist, and instead resolved to get to the root of the problem. From start to finish it took me a year to get a full night's sleep with a CPAP, and that was only through learning to read and analyze the data. It was a tremendous effort, and the only reason I didn't give up was because I had just been tired for so many years that there was no other option. CPAP isn't a pill that you can swallow and just start feeling better. My point is just that people not sticking to CPAP is very very common. I'd be curious to see a source linking this to incorrect diagnoses.

apple4ever 4y ago
> There is an amazing open source application for analyzing the data from your CPAP called OSCAR. The data available to you is quite granular and useful WHOA! Thank you for this. I will be checking this out now! It's really ridiculous to have all this data and not use it. We pay good money for the device and the doctors, and this data should be investigated.

Llamamoe 4y ago

> but their sleep studies are nearly perfect. This is because most labs only score AHI, often using 4% desat criteria, which underscore prevalence/severity possibly by as much as 80%. Most younger, non-obese female patients fall on the UARS side of the spectrum, with RERA events dominating over apneas and hypopneas- where an older man with 3 AHI might have 6 RDI, an excellent result for their age, it's common for a young person to have 15+ RDI, at which point most people struggle with day-to-day functioning. > One of the hallmarks of incorrect diagnoses is that a lot of her patients stop the _PAP machines after less than a year because they’re not helping anything. This in no way implies incorrect diagnoses. CPAP dropout rates are 40%+ even in people scored using the least sensitive criteria. CPAP just genuinely sucks, especially for anyone whose nasal breathing is poor. Most people with UARS don't benefit from it at all, but get way better with oral appliances, skeletal treatment, or nasal surgery.

pareidolia 4y ago

> but their sleep studies are nearly perfect. That's because most sleep studies are crap, unfortunately. I only got diagnosed with my 3rd PSG, which included the rare Pes because I insisted on it.

apple4ever 4y ago
I really believe that too