Your sleep apnea/CPAP thread

Diagnosed with sleep apnoea about a year ago. Had bone-crunchingly bad tiredness in the afternoons and also terrible trouble getting off to sleep as I'd stop breathing which would wake me up time after time until I was so awake I couldn't drift off anyway. Went to the sleep lab and I was almost scared I wouldn't get diagnosed because if I didn't have sleep apnoea what the hell would I do next. But they did tell me I had it, moderate-to-severe.

The CPAP machine sorted me out - I know lots of people have trouble adhering to it but I've found it not too bad and it totally got rid of my tiredness and sleep issues. Can't say I'm that keen on the thought that I'll be hooked up to a machine at night for the rest of my life but them's the breaks

"does apnea cause really inescapable nightmares sometimes?"

yes.

my dad and bro have it so I probably do too....

changed my life. that machine. i was dying without it. i was choking so hard from lack of air that i was starting to vomit in my sleep. which is kinda dangerous.

i posted a really long post after i got my machine on ile but i can't find it. i don't know what other sleep thread it would be on.

anyway, i waited WAY too long to do the sleep study. i really feel like now that sleep studies are more normal things that less people will die in their sleep. a lot of people think that undiagnosed apnea leads to dementia later in life. which makes perfect sense if you think of the lack of oxygen to your brain over decades.

but i can also see why people with mild apnea wouldn't get used to the machine. i sleep like the dead with the machine.

back to the sleep clinic on Friday, was diagnosed with mild apnoea a few years back but lately something is making me brutally tired and my best guess is this - it's not like my neck has got slimmer in the last few years. and i totally get a lot of nightmares too for a 48 year-old with nothing going on.

i figure if i get advised to use the CPAP this time it'll be easier seeing as there's just me in the bed.

I love using my CPAP, have only missed days since getting one when I'm on long-haul flights (and then I don't sleep anyway). 10+ years now I think? my wife was used to the sound after like a day or so, it's just white noise, like a fan. I got a new one recently since I changed countries/insurances & the new one is quite a bit quieter than my original one. plus it reports how many hours I slept that night. I love it, it's as close to a button that makes me sleep as I've ever had.

so what used to be mild apnoea is now a block-rocking 64 apnoeas per hour, which could explain quite a lot of how i've felt these last few months

got my machine this morning, am pretty psyched to take it for a spin tonight

so many Bane jokes

https://scontent-lhr3-1.xx.fbcdn.net/v/t1.0-9/17796325_10154473849767671_1371188453076479760_n.jpg?oh=9337eb1c23b816fd2173cf019403499e&oe=595DD19C

dreamy

i nearly nodded off in the hospital when i was trying it out

lately This happens - I lay down to sleep, suddenly wake up in a panick! feeling like I am dying - I am thinking this may be because I am having sleep apnea and my brain is saying "oxygen levels low! wake up! breathe! live!" how did others find out that they had sleep apnea? in this way?

Didn't find out from the panicked awakenings multiple times a night (or daily massive headaches every morning), but from what turned out to be partial temporal lobe seizures brought on by sleep and O2 deprivation: a recurring phantom taste/smell for days at a time, a creepy crawly feeling that moved up my back and ended on my scalp multiple times a day. Really disturbing. MRIs, EEGs, all normal; then finally a sleep study that showed 59 AHIs every hour and blood O2 around 65%. One month of using the mask and I realized: no more pounding heart panicking every night, no more morning headaches, no more 3 am insomnia.

I guessed because various girlfriends would complain that it sounded like I was dying and they'd hear me stop breathing and gasp, and I'd occasionally jerk awake. Only way to really know is to go do a sleep study. If you really want to hack it there's probably some internet of things oxygen level monitor you could hook up to your finger and look at the next day, but really just go do the sleep study.

i was surprised that i searched just "internet of things" in ilx posts, so i could post this article, and one of the first few of hits was this thread.

so it turns out that there's probably some internet of things oxygen level monitor you could hook up to your finger and look at the next day is quite true, but you probly can't look at it unless you get a subpoena against your med device insurer.

https://arstechnica.com/science/2018/11/you-snooze-you-lose-insurers-make-the-old-adage-literally-true/

My CPAP has literally saved my life I think, cheers NHS.

insurance is such a pain the ass I just pay for everything out of pocket. I even bought a new machine via a company who's "doctor" wrote me a prescription. Just started using Sleepyhead software and while I don't know what most of it means, it's more information than my dr would even look at. No oxygen readings of course. But when I look at the results of my sleep study including the oxygen levels, it's terrifying.

Is insurance the reason bane machines are so much more popular than the little plastic retainers? Both equally effective in my experience.

Could be. As I muttered upthread, I went the retainer route after a while and found it useful. That said I'm making arrangements to get a new fitting.

all my doctors said nothing short of a proper reverse vacuum cleaner darth vader machine would do the job.

Hey Ned - what brand of retainer did you get? I strongly suspect I have a problem w/sleep apnea but don't want to pay for a study/cpap

I got a CPAP via insurance a couple of years ago that automatically uploads data every night via cell network, and I am required to be compliant -- I think it's at least five hours a night five nights a week. And I see the doctor who originally conducted my sleep study once a year, and he has access to that data. It's reduced my number of events per hour every night from 60+ to 3-4.

if you suspect you have a problem, get a study.

My old machine didn't have cell, just the smartcard, which I'd bring in regularly. My new machine does have cell but it's not talking to anybody. And since I bought the machine myself I don't need to prove compliance to anybody except myself and my wife.

I have to go for a check-up once a year and they read the data off the machine in terms of how many hours I've used it, the implication being they'd take it back if I wasn't making regular use. But it's improved my quality of life so much I use it almost every night unless it's impossible.

Hey Ned - what brand of retainer did you get? I strongly suspect I have a problem w/sleep apnea but don't want to pay for a study/cpap

I honestly don't know! It's a two part model, oddly enough. Kinda want to see if I can just get a one piece.

ned_onepiece_swimsuit.jpg

I think the two-piece design is intrinsic to the way they work, by positioning your two jaws relative to each other: http://www.dentalsleepsolutions.com/index.php/about-sleep-apnea/obstructive-sleep-apnea-treatment-three-types-of-dental-sleep-devices

And I dimly recollect that I got my insurance to pay for the retainer by first letting them buy me a machine, they insisted on that, and then telling them I travel so much for work that the machine was really not viable.

I travel constantly for work - the AirSense10 I've got fits in my computer bag easily so that's been okay. But there's a new mini one looks pretty amazing and doesn't need a distilled water supply for humidification, so I may end up trying that. It doesn't look like it works with the mask I use though.

can i just replace everything from the neck up? thx.

*scans the dental devices screen for 10 seconds*
i'd like to milliontuple down on my request.

anyone else affected by the philips recall?

Not I, first I've heard about it.

Fuck, news to me. I use the dream station 1 auto cpap which is in the list. I do not have a DME after many terrible experiences with them I decided to forego insurance and just buy my own supplies. Got this model from one of those places where they have a dr and you just answer a few questions and they write out a script. I don’t know how I’ll deal with this recall.

I’m just gonna contact the people who sold me mine and hope I can do something otherwise I’ll just pay out of picket for a dreamstation 2 auto.

sorry to hear that... from the look of it, it's going to take a long long time to get the units back after they're sent off. i'm not sure how my provider will handle it, if i'll get a replacement or not.

dreading sleeping without it, i usually need it unless i'm utterly exhausted

I'm going to keep using mine until I sort out something new. I've never cleaned with oxygen and it doesn't get too hot or humid so I'm gonna assume I'm not breathing in too much foam.

I actually still have my previous CPAP, which was the Respironics System One, but not auto. Worst case scenario if I have to send my dreamstation in and wait for a replacement I can go back to using it. I can just look at what levels my auto has been using for the last few weeks and set it to that.

I'm diagnosed with "not really needing a CPAP" but I "twitch like a fucker" according to the person I share a bed with.

I'm going to be joining the CPAP club soon! Got diagnosed with moderate sleep apnea and I'm waiting for a second sleep study where I'll try different masks and they figure out what settings I need for my machine.

I have heard that depending on insurance, it can make more sense to buy the machine myself if I can afford it. Can anybody recommend a good source for the supplies that need to get switched out periodically?

I don't use insurance but my issue is with the DMEs that I've been set up with. Too much hassle and shitty service and shitty supplies. Your mileage may vary, so if your sleep dr. gives you a prescription and sends you to a recommended DME, it's probably best to give it a shot.

Otherwise, or in the future, there are a ton of online shops, but I've generally stuck with https://www.thecpapshop.com/ which has everything and has very good and very quick service, including money back mask returns.

It's a strange time though...the machine I use, that I bought outright myself, has been recalled so the market is all fucked up as it was like 60% of all machines. The Respironics Dreamstation. I suppose somebody new to the CPAP machine will just be put on the competing RESMED instead, which I'm sure is just as good.

The real issue of course is the mask type. If you look at the reviews, you can get a sense of the top options and try a bunch of those, but there isn't a single mask the works for everybody so don't be dissuaded by bad reviews.

The first concern is what type of mask, full or nasal, and if nasal, which style. There's another mask that's like the FULL face, even the eyes, I tried that once and it wasn't good...too many places to leak.

As a lifelong mouth breather (prior to getting deviated septum surgery and finally getting the right nose sprays) I always needed a full mask, which covers the nose and mouth. Took me a while to settle on one that worked pretty well. My problem then was that I have a beard, so I had to pull it really tight, which you're not supposed to do. After a few years of no real complaints I recently started having breakouts, which I think are due to covid masks as much (ugh)

So I decided ok, I'm actually breathing through my nose better, maybe I should try to switch back to a nose mask. I tried one and had a bad fit and then tried this older Fischer and Pykel Eson mask I had from trying once before and it worked amazing, no leaks. I've been using it for a few weeks now and it's been great except for the other night I somehow must've opened my mouth and started breathing through it which fucked it all up.

For most people the nasal masks are fine, but then there's 3 kinds, the kind like the Eson which fit over the nose, then there's the pillows, which kinda of fit into the nostrils, then there's ones that are just like little slits in a tube. The later two didn't work for me but this Eson is great. alhtough the headgear is kinda confusing.

The struggle continues.

Thanks. Thankfully the sleep study people are going to work with me on finding an appropriate mask type.

I'm looking forward to this. I've gotten to where I always feel tired and I just assumed it was part of getting older.

I got lucky with the mask I used for the study - DreamWear, the hose attachment is on the top of your head which works great for me. I started with the simple nasal one and those work okay, but things would get catawampus when I'd sleep on my side. I recently switched to the nasal gel cushion (prongs in the nostrils) which initially I thought would be awful, but it's actually great. I don't use a DME, just check various online suppliers.

Mr. Jaq was having mask leak issues, thought it was his beard etc so tried a few different masks. Turned out one of our cats had bit the hose.

Good luck Cow_Art - I thought waking up with a headache and always being tired was lack of coffee but turned out to be lack of oxygen.

Thanks. I've also got restless leg syndrome AND the sleep study told me that I have periodic limb movement disorder.

The medication for RLS is working and I stopped drinking caffeine, so I'm already sleeping a little better. Feels good to be getting these things taken care of.

mr veg has had a CPAP for 4 years or so (through insurance) & it’s made a big difference imo

he started w nose & mouth mask but it seemed to leak a lot when it forced extra air or if he changed position in his sleep. he switched to nose-only within the last year & it works great, seems less fussy & much more comfortable

I've had a couple of CPAPs over the last ten years.
I don't have to worry about cost because I get them through the NHS.
I've always had ResMed machines (they've been very reliable) and I get the current nasal mask appropriate from my assessment.
I find it works best if I sleep on my back but luckily I'm a pretty static sleeper.
It has made a huge difference to my life.

Wonder how hard it’ll be to get a resmed machine now that respirinics is off the market.

Didn't say it before but after some new sleep studies in late 2019 -- good timing, that -- I got a fully new CPAP setup with the covers-the-nose option in February 2020 and have been using it steadily since. I don't think I get MORE sleep -- I average around six hours, maybe seven -- but per the readings it's definitely been a help, so I'm grateful. Last week for the first time due to a short vacation I spent a week without it and I could tell the difference on waking up, a touch groggier, drier throat and so forth.

Ten years ago I went to a sleep doctor because of excessive daytime sleepiness. I was having 1 or 2 spells each day where I would zone in-and-out for up to half an hour, with a drugged feeling like I fighting off Nyquil. I video'd myself at work a couple of times to see what was happening--I was repeatedly dropping off into microsleeps of between 1 and 20 seconds long, as many as 40 times in 30 minutes.

After a couple of sleep studies, they said I had moderate sleep apnea (maybe a dozen incidents per hour). Got my CPAP, used it for over a year, and it never had any affect on my daytime sleepiness! So I eventually stopped using it.

Nowadays my sleepiness is really bad (like, "the boss keeps telling me to wake up" bad), so I just did my first sleep study in many years. My apnea is now about 50 per hour, so I'm getting a new CPAP soon.

So does anybody else here have to put a big elastic band around your head to keep your mouth shut while you've got the mask on?

I tried that once but it was too much. I stuck with the full face masks. As mentioned I’m now using a nasal mask and somehow am not opening my mouth, except one night where I suddenly did and started snoring and woke up my wife.

from an update email that ended up in my spam filter:

Based on current estimates of impacted devices worldwide, we are working towards completing this effort within approximately 12 months.

psychologically autocorrected to pathologically there, lol

Yikes. I wish I could add constructive thoughts but that sounds like a real combination of issues that nobody is helping you directly work through.

Thanks Ned. Yeah it's tricky. Like I have a sort of three-pronged chronic illness that's been hard to fully diagnose for about 20 years. I thought sleep apnea diagnosis was a breakthrough but I am realising more and more how hard it is to get help that considers all three issues. Like the sleep apnea doc keeps recommending dumb nasal sprays etc to fix a 20-year sinus problem.

For years I just accepted my lot and didn't try to fix this stuff and I now waver between thinking I should just go back to that and feeling like that is giving up.

I don't feel awful day to day but I could feel better for sure.

Sympathies! that sounds incredibly demoralizing.
do you have the full face mask currently, the kind that looks like an oxygen mask? Perhaps the much smaller “mask” that only covers the nostrils might be an option?
Mr Veg struggled mightily for a year or more w the face mask currently- scaling down was a huge game changer for him.

But maybe there’s other sinus issues at work that need addressing . Could you see an ear nose throat specialist without a referral?

I couldn't handle the full mask, very happy with just the nostril things now.

I couldn't handle the thing either, felt like I was being waterboarded

By that I mean I couldn't handle the CPAP at all. I have very mild apnea so I'm trying other treatments. Getting a new mattress helped too!

After I established to the health insurance's satisfaction that the machine wasn't working for me, they allowed me to go get scan-fitted for an apnea dental appliance. Still takes some getting used to wearing, but it's a lot less hassle than a machine.

Weird that it's called an appliance, which makes one think of stoves.

I think actually I told health insurance that I had a lot of plans for regular outdoor camping, where a machine wouldn't be useable, and on that basis I requested coverage for an appliance. Sounds like your NHS office might be harder to convince.

I’m sure I’ve said this before but I spent years struggling with different full face masks, which I needed because I was a mouth breather. Having a beard didn’t help and I was constantly leaking.

Getting deviated septum surgery and starting Nadine’s and singularity daily made me suddenly able to switch to a nasal mask and my compliance has been perfect. It’s just easier to get a good seal in the smaller area.

Sorry to hear how unhelpful it's been LG. The aftercare/support/guidance is pretty non-existent here too, I feel like I just fumbled my way into making it work.

You mentioned having a blocked nose and tbh I'm not sure the CPAP is usable in those circumstances. If I ever miss a night now it's because I've got a heavy cold.

It might be worth seeing if there's a local users group where people might have the time and willingness to offer some help with making it work, but on the other hand in your situation I'd probably be at the "fuck this" stage too. Hope something improves for you, whatever the direction you go.

It's seriously really helpful to read everyone's different experiences here, thanks!

So, VG, they moved me to the full face mask because I am, as the literature casually throws around, "a mouthbreather", lol. Like basically I can't breathe through my nose for 20 years or so, constant post-nasal drip etc. Weirdly, to Dan's experience, I already got the FESS operation for a deviated septum circa 2006, it initially felt pointless as it didn't stop my nose being blocked, but longterm it's been amazing in that I basically never got a sinus headache again. I had a lot of pain on the left side around that time.

So the doctor is trying to set me up with an ENT (again, not got high hopes there as my nose is so perma-fucked) but worth a shot. I've chased that today. I am thinking maybe if I want to try to feel better I just have to start everything again as it does sound, as you say NV, like the machine isn't going to work with blocked nose.

The three issues I've had are like blocked sinuses, fatigue/weakness, and reflux/ibs.

My apnea is fairly mild, in terms of incidents per night etc, but I do wonder if it causes the latter two since I've never really had proper diagnosis for why those happen. The apnea diagnosis, about two years ago, was a massive breakthrough, or it felt that way at the time. I didn't realise it would kinda put me back into needing to understand all the other stuff, which is a real mountain to climb in terms of where to start/how to see a doctor who helps.

On the mouthguard stuff, weirdly they started me on that approach, some kind of mouldable gumshield. Didn't seem to do anything but I would probably give it a go again or research a better one. Sometimes I think I should just focus on weight loss. I exercise loads so dietary change would prob see results there.

In general I just feel with the machine I have too many circumstantial problems for it to work. I sleep on my front, for example, and can only breathe through my mouth. Also have a beard, I had been wondering if I need to shave that off, lol. Don't want to tho as I am bald and need some facial identity.

It's all been quite tricky but as I say I don't feel terrible or whatever, mentally or physically. It's just psychologically quite risky to face up to having a chronic illness and roll the dice on fixing it, because after it initially ruining my life for two years, I learned to accept it. That took strength and was quite formative for my personality and who I am. I now feel ready to undo some of that acceptance because over time it's eventually started to feel like giving up on myself, and in a way on parts of life, and it's led to all sorts of other senses of futility I think. It is weird because I also know it's why I can do really pressurised work or jobs that the last three people quit after a month with total calm, or am known as someone who is hired for shitshow/mad bureaucratic nightmare type jobs, because I will be grand. So idk all bound up together, positive and negative stuff.

I knew it would be hard for me to stir up the feelings of the past, like the times before I had accepted chronic illness etc, and the same feelings of frustration with medical systems etc, but I didn't know exactly how it would feel. I know it prob sounds pathetic but without a therapist I wouldn't even have discovered the need to do this, let alone be able to try.

like tldr I am incredibly good at disassociating my mind from my body, or from other pressures or situations. but i would like to reassociate.

I spoke too soon! Last night my mask started making a strange clicking noise periodically, like a popping sound. Fun.

I do think you have to solve the nose breathing first and that will be a game changer.

That makes sense I think. At least also that gives me a place to begin.

Sorry to hear the mask slippage contagion has passed over the internet, haha.

You said you had septum surgery. Still issues with nasal polyps? For me it was both, the deviated septum was fixed and nasal polyps removed. And polyps can and do come back.

You say you’re opposed to the nose spray? I had tried nasonex and it worked great but suddenly was 100 plus dollars a month for a prescription. Was told Nasacort was similar enough but it didn’t work. That and Flonase gave me headaches. Nasonex finally went OTC so it’s relatively affordable now and I take it every morning. 2 sprays in each nostril while leaning forward, straight at the back of my head. Absolute life changing game changer. I also take Claritin in the morning and singular at night.

I probably don’t breathe through my nose from like the age of 10 to 48.

I thought my mask was working fine but then my sleep dude told me it was leaking a lot and it would help if I shaved. So I shaved and now it's making farting noises on my face as it leaks. Going in for a sleep study tonight, so we'll see what happens.

For me, nasal sprays have just never worked. I've had so many years of them. I would try them again tho just based on assuming a new ENT might have some better knowledge than the one five or ten or twenty years ago.

I don't think I ever had polyps. I think, and this may or not make medical sense, that the lining of my nose/sinuses just swells up, though I've never been confirmed as having any allergy. So while they can fix the septum that's only part of the issue.

But maybe properly focusing on this with an ENT can help me.

I have no useful regular communication from the NHS about it just this absolutely mental rapid fire phone appointment every few months where they tell me off for not wearing it and don't listen to me trying to explain that my nose is blocked or maybe that needs fixing first.

Know someone else with a different issue but p much the same experience with the NHS...it's infuriating.

yeah my only advice is don't even sweat the CPAP stuff because it's never gonna work well unless you can breathe through your nose. Fixing that should be the number 1 priority and whether that means surgery, polyp removal, or just experimenting with different sprays and medicines, over the counter or otherwise. A good ENT is what you need for sure.

Also don't know what's at the root of those issues but for me diet/allergies is a big part of it and I can tell when excessive dairy and wheat consumption (which is a lot of fun!) makes me congested.

I'm also a huge fan of Sudafed, which is very effective at clearing out my sinuses and helping me breathe but it's really really not something that's supposed to be taken regularly and can affect blood pressure, speediness and mood. But when I get sick or sinus infections or whatever, it's a must.

have they recommended only steroidal nasal sprays or have the newer antihistamine ones come up? azelastine is over the counter here now and I feel like it's getting undersold

In the latest referral there was one mentioned which I hadn't used before, so I did wonder has something advanced a bit over the years.

sadly Purple Drank is still not available on the NHS

Another Wes Streeting u-turn

just to clarify, there are mouth breathers who can use a mouth-only mask well, the issue has to do with face shape and beard and how that makes seals difficult.

I get nights where the thing just insists on leaking or i cannot get it comfortable but those are rare after years of use, and small leaks don't seem to bother me much, again after years of use. I know it's working because I no longer fall asleep every time I sit still for 2 minutes. I've got a full mouth and nose mask.

I don't really feel knackered in the day but guess I always wonder if lots of my other chronic illness stuff is caused by apnea, even if it's technically mild. I snore like an absolute demon.

My apnea suffering friend got some line installed in his chest that can sense when something is amiss and corrects it!

apnea or arrhythmia?

Apnea, as far as I know. He couldn't deal with the CPAP.

Device called Inspire.