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lepus · 2 years ago
Watching the way they handled this recall so poorly got me to do whatever it took to reduce my snoring and mild sleep apnea down to almost nothing (mouth/throat/tongue exercises did the most followed by head positioning). The stories of people who relied on their CPAP caught up in it were heartbreaking and nerve wracking.

Edit: I used a combination of the Snore Gym app and Vik Veer's videos on Youtube. After a couple months my snoring became barely audible, but it doesn't always work for everyone. I was tilting my head down at night which blocked off my throat somewhat, so I lifted my head up higher with a bigger pillow.

addicted · 2 years ago
I hope you’ve done an actual sleep test to confirm your sleep apnea has improved.

Snoring is a useful but not 100% correlated marker for sleep apnea. It’s very possible to improve snoring without reducing the sleep apnea itself.

Solvency · 2 years ago
I'm 39 years old. Perfect shape, no health issues, don't smoke, don't drink, regular exercise.

About a year ago, Out of NOWHERE I began snoring at night, and only when laying on my back. Never snored my entire life. No other position. But it drives my wife crazy. The problem is we cosleep with our baby, and laying on my back is the safest position.

I don't have apnea so I don't qualify for insurance for any kind of mouthpiece. The ENT just laughs me off like it's no big deal. My nose is fine and he's zero help.

I know it's something to do with my tongue but I have no idea what to do about it.

I've tried thin pillows, thick ones, no pillows. Doesn't help.

DiggyJohnson · 2 years ago
Presumably they also can sense how they feel when they wake up. An unencumbered night feels completely different than a night hindered by sleep apnea, snoring or otherwise.
lepus · 2 years ago
My sleep apnea was already extremely mild to the point where a sleep doctor told me I could just sleep on my side and not experience it, but I appreciate the concern.
tommica · 2 years ago
I had a coworker that himself is getting a jaw surgery because his bone structure would sometimes make him stop breathing while sleeping for short moments.

His brother apparently was a horrible snorer, but that was due to his nose, that the "skin" would collapse inwards when he took a sharp breath through his nose, instead of expanding. Apparently just having some kind of tape on his nose to stop that from happening while sleeping made a huge difference.

this_steve_j · 2 years ago
Fellow mouth taper here! It’s a must for shared hotel rooms. I have no idea about the safety or effectiveness for sleep apnea, but it significantly (N=1) improves others’ sleep.
werdnapk · 2 years ago
Jaw surgery helps open up the airways by moving the jaw forward.
baq · 2 years ago
holy shit I'm the brother except I'm an only child. need to try out the tape
diob · 2 years ago
As someone with apnea due to my anatomy (and AHI of 79 at that), I'm jealous. When I first got diagnosed more than 10 years ago the doctor thought I was obese seeing that. Nope, just bad luck. I'm fit, would hate to see how bad it would be otherwise.
TylerE · 2 years ago
Hey someone finally beat my high score of 58. I am obese, but I’ve been down as much as 50 pounds and up as much as 40 over my current, and it’s never really made a bit of difference. I have a very “tight” neck and throat and probably a deviated septum as well (on top of chronic nasal allergies/congestion), so yeah, I mouth breath a lot.

I’m due for a new machine soonish and I’m probably going to push for a bipap. I’m on an autos range of 17-20, and I will max that out sometimes. My scores are usually real good (like, sub 1.0), but the lack of headroom is concerning. 20 is as high as my machine (Resmed, luckily) goes, but my understanding is most bipaps go to 25, and the actual bilevel feature will likely be useful as well.

tired_star_nrg · 2 years ago
Invisalign actually helped my OSA a ton, that and nasal surgery for deviated septum brought my AHI from 40 down to 8.
vorador · 2 years ago
Could you detail a bit what exercises you did and how you changed head position? Thanks!
alliao · 2 years ago
I've always wondered whether strong singer would snore... they got to have pretty decent control as well as well exercised muscles in that area
dbt00 · 2 years ago
I recently saw this study, but it's almost 20 years old, I don't know if there's more recent data available.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1360393/

"Didgeridoo playing as alternative treatment for obstructive sleep apnoea syndrome: randomised controlled trial"

fnordlord · 2 years ago
When my band toured and we could afford two hotel rooms, the singer would get one room and the rest of us would take the other. He was by far the loudest snorer of the 5 of us. Obviously just a funny anecdote but definitely not always the case that singers are the quiet sleepers. Or maybe he just needed more singing lessons.
TurkishPoptart · 2 years ago
If I'm waking up in the middle of the night choking / gasping for air (happens 1x or 2x a week at this point) is that a symptom of sleep apnea? I'll try to talk to a doc about it but I want to make sure I'm on the same page as some of you.
jtdressel · 2 years ago
Yes, you should get that checked out.
eek2121 · 2 years ago
They should be required to replace all machines. They offered to give me $50 at one point because my machine is old.

I require a bipap with ASV machine due to having complex sleep apnea, and it costs at least a couple grand.

I ended up scrambling to get a replacement. The old one works perfectly fine, but I can’t safely use it due to the recall. Even after insurance I had to pay a grand out of pocket because they make you rent it at first.

petesergeant · 2 years ago
I cured mine using tirzepatide once a week and fluticasone propionate nightly. Could never really get used to the CPAP.
clumsysmurf · 2 years ago
There is the possibility TENS may be of use as well

https://www.news-medical.net/news/20230803/TENS-machine-may-...

loceng · 2 years ago
I recently found a line of knowledge-practice relating to holistic dentistry specifically that acknowledges and addresses biomechanical-physiological aspects of the bite. E.g. occlusion issues with the teeth, where the jaw is unable to land and find a comfortable-relaxed position - and so jaw/head muscles continue to engage, spasm, or guard completely - causing a potential systematic cascading failure that has a "ridiculous" amount of severe symptoms possible, and why it's ridiculous - is that you'd think this would be part of mainstream dentistry practices because of how foundational the bite position is, yet it's not mainstream; the first diagnostic is using a device called BioPak, hooked up to the head/face at different position with electrodes, it monitors muscle activity - and can tell which specific muscles are firing-resting and at what rate.

They also use TENS as part of their protocol.

It took me 8 years to stumble upon finding the practice-protocol for a problem I figured I had but couldn't find dentists to solve for it.

nurettin · 2 years ago
I did none of that. Instead, what worked for me was to change my lifestyle. Paced walk half an hour and lift for ten minutes everyday. Reduce smoking to rare occasions. Eat less, lose weight, and finally get those teeth done.
dperrin · 2 years ago
With the exception of losing weight (already a 22 BMI) I tried pretty all of this to no avail. Turns out I had a deviated septum and surgery fixed the problem. As a bonus, I can easily breathe through my nose now.
lepus · 2 years ago
That's great! I didn't want to give the impression that I had the one and only solution to everyone, so what matters is whatever works for you.

Dead Comment

jcims · 2 years ago
Any good references for the exercises?
elric · 2 years ago
Vik Veer has a couple of youtube videos on some you could try: https://www.youtube.com/watch?v=wNscQ3bGxNk
chrisgd · 2 years ago
Pro Publica has done a lot of good reporting on this topic.

https://www.propublica.org/article/philips-kept-warnings-abo...

icegreentea2 · 2 years ago
Blood boiling.

A complete failure of the QMS.

I know the FDA wants/needs to keep Philips around to manage the recall, and like... people with CPAPs need them, but I really wish they would just terminate all of Philips' licenses/approvals/clearances right now. I hope the DOJ has bigger penalties to lay down.

FDA's post market surveillance relies on manufacturers to be sufficiently honest. Philips sat on thousands of reports for over a decade. This is simply unacceptable. For the FDA to be able to say with a straight face that their post market surveillance has value, they need stronger assurances that manufactures will play by the rules, and I feel that means really making an example of Philips here.

I've worked in medical devices before, and I am quite aware of how easily QMS and SOP can diffuse responsibility. It's so easy as a line worker/line manager/middle manager to shrug and go "well, I did my role as prescribed by QMS and SOP - it's not my problem that we're sitting on 10k medical device reports that we should be notifying the FDA about". And that's a huge problem.

Obviously upper management has the most blame here, but no one involved is blameless. The QMS has some boilerplate about how everyone is responsible for quality. If that's true, then everyone involved is also responsible in some part.

I know terminating all of Philips' licenses for like 5 years or something will basically make a lot of people jobless. But like 500 people died because some assholes decided to go for the $$$, and everyone else involved let it happen. That's not an acceptable corporate standard.

gurchik · 2 years ago
The FDA is preventing Philips from selling any sleep apnea devices in the US for a few years until some unspecified manufacturing quality control problem is fixed. This is interesting because the new devices don’t use the same foam and don’t have this defect. I’m unsure if this ban affects ventilators which were also affected by the foam defect. Still, according to the ProPublica reporting Philips already made bank the last few years. They’re also trying to limit damages by putting all blame on the US subsidiary.
steve1977 · 2 years ago
> But like 500 people died because some assholes decided to go for the $$$

500 people died so far and that we know of.

So yeah, fully agree with your points.

lijok · 2 years ago
You just know the people that brought this up internally at Philips were told “it’s not that simple, we can’t just…”.

Why is every CEO that held the reins during this debacle at Philips not in jail right now for manslaughter?

dns_snek · 2 years ago
Because after decades of inbreeding between the legislators, law enforcement, and corporations, the justice system is completely broken.
dash2 · 2 years ago
I have a strong aversion to comments like this, because they come across as extremely generic. Are you really very knowledgeable about the Dutch justice system, that being where Philips is headquartered? Philips are gonna lose at least $400m from this: what makes you so certain that the justice system is "completely broken", or that manslaughter charges are what they deserve? Have you compared the justice system with, let's say, Russian justice or Zimbabwean justice? I think the latter are a great deal more broken.

Casual cynicism is as foolish as casual naivety, and more toxic and dangerous.

zackmorris · 2 years ago
Don't forget that if corporations are people, then this might be grounds for the corporate death penalty.

The way that would work is the Philips name would be retired and all patents, copyrights and trademarks would be released to the public domain. All ownership would end the same way as when someone dies, and assets would be distributed to next of kin. The company might be broken up and sold at auction, with the proceeds donated to shareholders and any other owners/investors. Or parts of it could be sold to other companies to pay for lawsuits and other costs, like when splitting up a company under antitrust laws.

Looks like Philips has a market cap of just over $20 billion. Shifting that intellectual property to the public could start an open source revolution in medical research. The ripple effects of that are hard to predict, but might put more of a focus on cures than treatments.

We could see gene therapy for the primary inherited conditions arriving years earlier than expected. Conditions that at least 10% of the population have to deal with every single day that affect quality of life and aren't being addressed by for-profit corporations. Imagine the relief for mental health that would come through these cures, reducing the isolation and alienation for the people who have been forced to internalize their situations because the larger population is oblivious to their experiences.

Gene therapies start around $1 million per person. But the main cost lies in research, not application. Why are we performing medical research under a for-profit model? We didn't use to.

Recent trends show that large corporations are focusing on profits over the health of their customers. If they've abandoned their charters, then maybe it's time for alternative approaches. IMHO the priority today should be large epidemiological studies to provide big data for AI to spot the correlations which lead to cures. But the astronomical profits of big pharma have diverted those funds to the point that those companies are slowing progress and increasing costs for all of us.

matheusmoreira · 2 years ago
Good question. They basically sat on reports instead of notifying authorities. Criminal negligence.

Deleted Comment

sand500 · 2 years ago
The article doesn't explain how these machines caused the deaths but the FDA announcement hints to it

> A wide range of injuries has been reported in these MDRs, including cancer, pneumonia, asthma, other respiratory problems, infection, headache, cough, dyspnea (difficulty breathing), dizziness, nodules, and chest pain.

wkat4242 · 2 years ago
Yeah the reason for the recall is the foam inside disintegrating and being blown into the lungs.

I have two affected machines (one for each place I regularly sleep, I bought two so I didn't have to keep dragging them around). One of them is so bad that if I let it blow through a facemask for a day, the inside is all black. The air also smells really awful, like plastic fumes. Strange enough the other one which I use a lot more regularly fares a lot better.

Unfortunately Philips still didn't bother replacing mine. They are an awful company to deal with. I registered them over 2 years ago. Only last September I got an email back asking me to confirm some details. Since then again nothing. They don't even bother replying to requests for a timeline.

I still use the other machine regularly but it's also starting to taint masks when I test it with them. The local health service (I'm in Europe) lent me another brand but I really need these replaced.

The disregard for their customers' lives is really appalling. Not surprised people have actually died.

I paid big money for them too, 800 and 600 euro roughly (one of them is a full auto, the other isn't). A lot of money for what is basically a pressure fan in a box.

Kerbonut · 2 years ago
Go to their secured email and email the documents including a current prescription for the appropriate machine (bipap vs autosv vs cpap etc). They have a call back number in the secure email, give them a call if needed. I got mine replaced after a lot of frustration but it was worth it.
quasarj · 2 years ago
You're still using it?!
theGnuMe · 2 years ago
That's like really bad, long term is there a risk of lung tissue fibrosis? I would expect it. I have the resmed but honestly I think a dental appliance might be better.
mardifoufs · 2 years ago
It was recalled there too, right? and pulled immediately in Europe too after this became public?! Does that mean they don't have to fix it or replace it immediately? Even car manufacturers are quicker to deal with recalls, even for much less dangerous stuff...
sizzle · 2 years ago
Also the black stuff in the facemask could be killing you, find a great personal injury lawyer and get that stuff tested. If it’s foam you might be in for a big payday for them damaging your lungs.
rightbyte · 2 years ago
> One of them is so bad that if I let it blow through a facemask for a day, the inside is all black.

This problem seem easy to recreate in a workshop or lab. There is really no excuse for this.

sizzle · 2 years ago
Can you remove the foam if the only function is to reduce sound according to what I read? Or can you upgrade it to like a steel non-microbial mesh material?
p1mrx · 2 years ago
> if I let it blow through a facemask for a day, the inside is all black

CPAP, you were the chosen one! It was said that you would bring balance to the respiratory system, not leave it in darkness!

wyldfire · 2 years ago
It does explain it, in the second, third paragraphs:

> The FDA said that since April 2021 it has received more than 116,000 medical device reports of foam breaking down ... amid reports they were blowing gas and pieces of foam into the airways of those using the devices.

gifvenut · 2 years ago
The reporting in this leaves a lot of questions. I can understand pieces of foam, but that the machines were harming people by blowing _gas_? The air that we breathe is a mixture of gases. What other type of harmful gas could a CPAP machine blow?
sizzle · 2 years ago
Can this subpar foam be taken out and replaced with a non-microbial metal mesh or something? The use case for the foam was noise reduction it said in the article.
elric · 2 years ago
While I'm not disputing that Philips Respironics are an evil bunch of cunts, half of those symptoms are strongly correlated with just having sleep apnea and/or being on CPAP, even without cancer foam.

Dirty water tanks/hoses can cause infections or cough. Having sleep apnea is often associated with having asthma. Exacerbation can lead to pneumonia, etc.

I'm assuming the FDA didn't just look at these patients in isolation, but compared them to non-Philips-CPAP controls and to untreated apnea controls?

Deleted Comment

jader201 · 2 years ago
Could something like this cause IPF?

My father passed away a few years ago, after being diagnosed with IPF only about 1-1.5 years before passing. He had no past of being exposed to anything hazardous. His pulmonologist couldn’t ever figure out what could’ve caused it.

He was diagnosed with sleep apnea probably 15 or so years before passing, and used a CPAP nightly.

He eventually developed a nasty cough that never went away, and was finally diagnosed with IPF.

I’m not looking for any sort of retribution, more just possible answers or even just clues, since it’s not clear whether it was related to anything hereditary (I have 3 siblings).

And to be clear, I’m not even sure what brand/model he used (though my mom would likely know). So there’s a decent chance it’s unrelated.

jader201 · 2 years ago
I cross-posted this in a related thread [1], and @bagels dropped [2] this article that suggests it may be related:

https://www.aboutlawsuits.com/pulmonary-fibrosis-cpap-foam-l...

[1] https://news.ycombinator.com/item?id=39225674

[2] https://news.ycombinator.com/item?id=39226537

diob · 2 years ago
Jesus, wondering if I need to get checked out. I used one of these models for over 5 years :(
pyuser583 · 2 years ago
I was directly affected by this.

The recall was handled by a third party company, with a third party domain. All communications came from the third party domain.

I was unable to communicate with anyone from the manufacturers domain.

So I had to respond to emails from shadysounding.com and give my info to phone numbers on www.shadysounding.com.

I’m glad the recall list wasn’t leaked. Otherwise there would be tons of ID theft.

damontal · 2 years ago
It can still be leaked.
Hackbraten · 2 years ago
I hope the victims are going to hire John Barylick for their lawsuits against Philips.

Barylick knows his way around cheap PU foam that emits toxic particles in lethal doses. He helped the victims of the 2003 Station Nightclub fire, where 100 people died, mainly due to a toxic combination of PU and PE foam that was used for soundproofing. [1]

Watch his talk [2] if you feel you can stomach the horrendous details. It includes an excerpt from a bootleg digital sound recording made during the disaster. (The digital tape was later found amidst the ashes, next to the body of one of the victims, and fully restored.)

[1]: https://www.bu.edu/articles/2013/damages-station-nightclub/

[2]: https://youtu.be/zUndJG44Moc

diob · 2 years ago
I do honestly wonder what the next step is for folks like me who are affected by this. Does Philips pay my future medical bills if I get sick? Or do I just get a "we're sorry"?
sizzle · 2 years ago
See a pulmonologist and let them know you’ve been potentially inhaling micro-foam from this device, see if you can document your lung progression from healthy to diseased if that foam dust is just sitting in the lungs.
Hackbraten · 2 years ago
Lawyer up. Anything else would be an unfair match. They have a legal team after all.
tombert · 2 years ago
I was recently diagnosed with sleep apnea. I'm on the very lower end of "moderate" (about 16 interruptions per hour), which fortunately means that the oral appliances are effective.

I've been suspicious of myself having sleep apnea for quite awhile now, and I held off on getting an official diagnosis in no small part because those CPAP machines give me anxiety; I'm somewhat convinced that I would never really get used to them, and I would wake up feeling like a head crab was attacking me. I had also heard some horror stories (not dissimilar to the Phillips machines) that really held me off.

I'm very grateful that the oral appliances exists, now even more so.

tapoxi · 2 years ago
I was recently diagnosed with severe OSA and I'm using a Resmed machine. I actually adapted to it immediately and I find the mask I'm using (Fisher and Paykel) to be comfortable.

Incredible life changer. You are fortunate that an appliance works, but I absolutely don't regret getting tested for it and using one.

I'm in my mid 30's and not obese, and didn't consider OSA to be likely but got tested due to grogginess and my Dad's recent diagnosis.

cowkingdeluxe · 2 years ago
Similar story here, same equipment. 41 now, got it a few months ago. Life changing. I've done alright for myself business wise but I wonder what I could've accomplished had I went to the doctor earlier. I thought multiple naps a day, falling asleep on the desk were normal.
tombert · 2 years ago
Yeah, whatever works! I might still get a CPAP eventually, particularly if my teeth start shifting from the appliance, but at least right now the mouthpiece is convenient and works just about perfect.

I'll do a bit of research on the Fisher and Paykel masks.

slowmotiony · 2 years ago
I got over all those fears and got a Resmed machine and I can't understand how people can sleep with it. Even if you somehow found the perfect mask, the thing is so loud you can forget about falling asleep. Imagine a constant "WHEEEEEZ... WHOOOOOOOZZZ...." right next to your ears, throughout the entire night. What a letdown.
jawngee · 2 years ago
You likely have a faulty machine or insane acoustics in your room. My resmed airsense 10 is almost silent. If you are hearing exhausting in your mask then you might be exhausting into your pillow.
elric · 2 years ago
You will want to place the machine below the level of your mattress, but not on the floor (on account of it sucking up dust and whatnot). Preferably on something sturdy, not a flimsy sheet metal table that will vibrate and make more noise.

When the fan is spinning at a constant speed, the noise level should be low. When you switch from inhaling to exhaling, the motor will ramp down, and then up again as you inhale. If you have EPR enabled (or if you are on bilevel), the motor will spin down even more when you exhale, meaning it will have to work harder to spin back up when you inhale. This can cause more noise.

Much like in software architecture, everything in CPAP is a tradeoff. High pressures can cause mask leaks and excessive farting. Low pressures can be more comfortable but can cause snoring or apneas. EPR can cause noise and possibly reduce efficacy. Heated humidification can improve comfort, but requires more maintenance on mask/hose/tank. One mask make be more quiet, but may start to leak as you roll over. Etc.

And much like software projects, every patient is slightly different. Finding out what works isn't easy. Fortunately, you have the rest of your life to optimize therapy. And the better you optimize, the longer that life will be.

cbhl · 2 years ago
I was advised to not put the CPAP machine itself on your nightstand by your head. The hose should be long enough that you can put the machine at the foot of your bed (by your feet) so you don't hear it as much.
e40 · 2 years ago
I used the Airsense 10 and now the 11. The 11 is slightly louder, IMO. Neither were loud enough to bother me.

The perfect mask for me is the nose cushion. N30i for me, if anyone is curious.

x3n0ph3n3 · 2 years ago
I wouldn't tolerate them without the Dreamwear mask, which is the least annoying mask available. At this point, I much prefer sleep with the CPAP than without it.
coldpie · 2 years ago
> I held off on getting an official diagnosis in no small part because those CPAP machines give me anxiety

Thanks for this comment. I'm finally talking to a sleep doctor next week after years of putting it off for the very same reason. I'm hopeful it will be as life-changing as comments here suggest, but I'm still nervous about the remedies.

Tokkemon · 2 years ago
Don't let the machines put you off. They can be very comfortable, and like all things, you get used to having a mask on at night after some adjustment time. There's also settings to adjust the ramp pressure so you can fall asleep before the air pressure changes too dramatically.
adrr · 2 years ago
Where are you getting an oral appliance?
tombert · 2 years ago
My sleep specialist doctor prescribed it. They had to do a scan of my mouth and after 3 weeks I got the mouthpiece in the mail.
operatingthetan · 2 years ago
There are options on amazon for under $80 if you just want to try it and see if it helps.