Hi there! Guess who got diagnosed. (Yugh.)
Currently using a mask that just involves noseplugs rather than a full-on one, which I'm grateful for. Only was recently diagnosed and started using this so we'll see what the future brings here...
― Ned Raggett, Monday, 29 October 2012 03:24 (thirteen years ago)
My dad was diagnosed with this when it was still a relatively new thing--early-mid '90s, maybe. My brother-in-law was diagnosed a year or so ago.
― clemenza, Monday, 29 October 2012 03:27 (thirteen years ago)
It was interesting to learn how relatively more common this is becoming. The results of the sleep study sure were eye-opening -- I knew I snored and could toss a bit but yikes.
― Ned Raggett, Monday, 29 October 2012 03:32 (thirteen years ago)
yeah, keep us posted how this goes for ya. i know lots of us here have our sleeping problems (AHEM) and would be interested.
i fully intend to go through with one of these sleep studies, y'know, one day, if maybe i can ever afford health insurance.
― 'til the end, my dear (arby's), Monday, 29 October 2012 03:36 (thirteen years ago)
I admit, having said insurance is a hell of a boost when it comes to this stuff. Hell, if I had to cancel the sleep study too close to the time, I would have had to pay $300 no matter what.
― Ned Raggett, Monday, 29 October 2012 03:37 (thirteen years ago)
yeah, i poked around for out of pocket costs and was seeing numbers from 2,000 to 5,000+, not including the CPAP machine if you're diagnosed. not in the cards just yet!
― 'til the end, my dear (arby's), Monday, 29 October 2012 03:45 (thirteen years ago)
so good thing that when romney wins in a historic landslide in nov he can push the magic button that undoes everything O ever said or did and no one will EVER SLEEP AGAIN
I am having trouble with the ladies.
― buzza, Monday, 29 October 2012 04:25 (thirteen years ago)
Thank god, mine doesn't look like THAT.
― Ned Raggett, Monday, 29 October 2012 04:30 (thirteen years ago)
I've been diagnosed with severe sleep apnea too. Was prescribed cpap a number of years ago, and just resisted and lagged on getting it. I tried a number of alternative "holistic" therapies that the doctors don't mention to you, such as; a saline nasal rinse, breathe right strips, adjusting your sleep position, a humidifier, reducing alcohol use, and practicing the dijidiroo (strengthens throat tissue). These have all reduced events of apnea in clinical trials, and offered a small bit of relief, but are not considered really effective treatment. The only AMA ($$) endorsed treatment is cpap, so eventually I got a machine a few months ago. I am very resistant to it, and do not find my sleep to be restful with it on, and then I end up pulling it off after a few hours. I am considering changing the mask (the nose pillows). Anyway, no long term solution for me yet. As an otherwise healthy person, it is really a trip to have this "life threatening illness".
― Leon Septamost, Monday, 29 October 2012 08:17 (thirteen years ago)
what were your symptoms ned?
i sometimes wonder about this. cuz i get sleep paralysis from time to time. and im a pretty light sleeper. but i don't get the next-day-drowsiness or anything - i usually feel like i've had a pretty good sleep.
― Author ~ Coach ~ Goddess (s1ocki), Monday, 29 October 2012 12:51 (thirteen years ago)
my dad had a big sleep apnea problem 10-15 years ago, got into several fender benders because he had a long commute and was nodding off at the wheel constantly, including a couple times while i was in the car, which was scary as hell. he lost some weight, though, and the problem basically went away, although i think it came back for a while when he regained some of the weight at one point. i believe it kinda permanently messed up his sleep patterns, though, which is only not a big issue in and of itself because he's retired now and can take midday naps etc.
good luck, ned! you're obv not in dire need of weight loss but you might want to try taking off some pounds to lessen the issue.
― some dude, Monday, 29 October 2012 13:20 (thirteen years ago)
oh my god, i wouldn't wish apnea on my worst enemy. i had a sleep test and they told me i was waking up hundreds of times a night. nothing like waking up day after day and feeling like you hadn't slept. i had it severely and could never use the mask--it was beyond frustrating. thank god i lost the weight (40 lbs) that was causing it. good luck, ned!
― Iago Galdston, Monday, 29 October 2012 13:26 (thirteen years ago)
I had to use one of these for several years but after losing about 30 lbs it seems to have gone away. I keep urging my wife to go and get tested again - she did, a few years back, and was told she doesn't have apnea, but she snores loudly enough that she can wake me up, in another room, when I have earplugs in.
― C-3PO Sharkey (Phil D.), Monday, 29 October 2012 13:28 (thirteen years ago)
Thanks all -- there's a couple of things I'll be doing besides the machine to help with it (including earplugs -- Phil D.'s story rings true a bit here). Weight loss is always handy but then again I don't have much to lose, really, so it'll be a matter of shaving off a few pounds more than anything else. Symptoms basically lay in me noticing I was feeling pretty awfully out of it many mornings over the past few months when I'd theoretically had enough sleep -- among other things I started going to bed regularly at an earlier hour, which has also helped a bit. I've only just started and I don't mind the noseplug mask too much, but sometimes I end up with a rather dry mouth so I'm working on perfecting the best balance for the humidifier.
― Ned Raggett, Monday, 29 October 2012 14:30 (thirteen years ago)
My mom has the apnea and CPAP improved her quality of life SO MUCH, she's kicking herself that she didn't do it sooner. It took some getting used to, but now both she and my father sleep much better--my dad finds the sound soothing, like a white-noise machine--and NO MORE SNORING.
Mom says she really just thought it was normal to be sleepy and nodding off during the daytime, craving naps--she figured she was just a sleepy person. Now she's fine.
― quincie, Monday, 29 October 2012 14:42 (thirteen years ago)
Sucks, Ned. Did they tell you if you have central or obstructive apnea? I guess the snoring points to the latter.
― emilys., Tuesday, 30 October 2012 02:37 (thirteen years ago)
does apnea cause really inescapable nightmares sometimes? a friend of mine who has it used to say he thought I did based solely on the description, and most nights these happen, I feel like my breathing is shallower than other nights, like I wake up groggy and head-fogged and unable to escape.
I woke like 5 times due to nightmares last night.
― waht, I am true black metal worrior (Neanderthal), Wednesday, 1 March 2017 00:01 (nine years ago)
I ended up not using the machine after a couple of months though I still have it around -- instead I have a retainer-type thing that I use every so often. I'm not feeling anything like I did when I was first diagnosed, and I suspect a lot of it had to do with my personal/financial situation at the time causing a shitload of stress. That said my girlfriend does say I can snore and then some...
― Ned Raggett, Wednesday, 1 March 2017 00:29 (nine years ago)
I don't know why anyone puts up with sleeping next to me. My sleep apnea is mild enough that I was told I didn't need a CPAP, but (on top of the snoring) I'll just stop breathing sometimes which is apparently alarming or whatever.If anyone has tips for making it easier for your partner to sleep soundly ...
― 0 / 0 (lukas), Wednesday, 1 March 2017 00:41 (nine years ago)
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
― Zelda Zonk, Wednesday, 1 March 2017 01:25 (nine years ago)
"does apnea cause really inescapable nightmares sometimes?"
yes.
― scott seward, Wednesday, 1 March 2017 01:44 (nine years ago)
my dad and bro have it so I probably do too....
― waht, I am true black metal worrior (Neanderthal), Wednesday, 1 March 2017 01:46 (nine years ago)
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.
― scott seward, Wednesday, 1 March 2017 01:52 (nine years ago)
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.
― Sacked Italian Greyhound (Noodle Vague), Wednesday, 1 March 2017 06:48 (nine years ago)
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.
― droit au butt (Euler), Wednesday, 1 March 2017 07:14 (nine years ago)
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
― Raul Chamgerlain (Noodle Vague), Wednesday, 5 April 2017 17:14 (nine years ago)
so many Bane jokes
https://scontent-lhr3-1.xx.fbcdn.net/v/t1.0-9/17796325_10154473849767671_1371188453076479760_n.jpg?oh=9337eb1c23b816fd2173cf019403499e&oe=595DD19C
― Raul Chamgerlain (Noodle Vague), Wednesday, 5 April 2017 18:07 (nine years ago)
dreamy
― droit au butt (Euler), Wednesday, 5 April 2017 19:03 (nine years ago)
i nearly nodded off in the hospital when i was trying it out
― Raul Chamgerlain (Noodle Vague), Wednesday, 5 April 2017 19:11 (nine years ago)
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?
― Dean of the University (Latham Green), Monday, 12 June 2017 17:38 (eight years ago)
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.
― Jaq, Monday, 12 June 2017 17:53 (eight years ago)
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.
― dan selzer, Monday, 12 June 2017 18:23 (eight years ago)
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/
― legit lib llc (check our patreon!) (Hunt3r), Wednesday, 21 November 2018 16:02 (seven years ago)
My CPAP has literally saved my life I think, cheers NHS.
― Danton Lok (Noodle Vague), Wednesday, 21 November 2018 16:24 (seven years ago)
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.
― dan selzer, Wednesday, 21 November 2018 16:33 (seven years ago)
Is insurance the reason bane machines are so much more popular than the little plastic retainers? Both equally effective in my experience.
― mick signals, Wednesday, 21 November 2018 16:48 (seven years ago)
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.
― Ned Raggett, Wednesday, 21 November 2018 16:49 (seven years ago)
all my doctors said nothing short of a proper reverse vacuum cleaner darth vader machine would do the job.
― dan selzer, Wednesday, 21 November 2018 16:51 (seven years ago)
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
― The Poppy Bush AutoZone (upper mississippi sh@kedown), Wednesday, 21 November 2018 16:52 (seven years ago)
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.
― Plinka Trinka Banga Tink (Eliza D.), Wednesday, 21 November 2018 16:54 (seven years ago)
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.
― dan selzer, Wednesday, 21 November 2018 16:55 (seven years ago)
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.
― Danton Lok (Noodle Vague), Wednesday, 21 November 2018 16:58 (seven years ago)
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 Raggett, Wednesday, 21 November 2018 17:06 (seven years ago)
ned_onepiece_swimsuit.jpg
― mick signals, Wednesday, 21 November 2018 18:23 (seven years ago)
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
― mick signals, Wednesday, 21 November 2018 18:25 (seven years ago)
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.
― mick signals, Wednesday, 21 November 2018 18:35 (seven years ago)
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.
― Jaq, Wednesday, 21 November 2018 18:41 (seven years ago)
can i just replace everything from the neck up? thx.
― legit lib llc (check our patreon!) (Hunt3r), Wednesday, 21 November 2018 19:44 (seven years ago)
*scans the dental devices screen for 10 seconds*i'd like to milliontuple down on my request.
― legit lib llc (check our patreon!) (Hunt3r), Wednesday, 21 November 2018 19:46 (seven years ago)
Everyone I know who has had a CPAP machine has been pleased with the change in their sleep (and subsequent effects). Hope it works for you.
― djh, Friday, 24 October 2025 21:02 (seven months ago)
quite hard sleeping with the mask i have to say, based on night #1, but i'm sure it gets easier? feel like as someone who sleeps on my front/on face it kinda shoves the mask into your face more. also felt at various points in the night it was leaking and i woke up and had to fix it.
i guess it just is a matter of adjusting bits and pieces. i have a follow-up with nhs in two/three weeks anyway and i think the point of that is to see if the mask is the right one etc etc.
― LocalGarda, Tuesday, 28 October 2025 07:43 (seven months ago)
I had to train myself to sleep on my back rather than on my side when I started using my CPAP. I found it too irritating otherwise (I'm a nose mask person and it would slide around too much)It was worth it. Getting proper sleep has improved my life so much
― treefell, Tuesday, 28 October 2025 08:03 (seven months ago)
i have the full face mask so it obviously doesn't lend itself to being on your front or even side so easily. makes sense it might need a bit of change in how i sleep. definitely felt some sense of calm from it helping me breathe at times, so it wasn't all negative. this morning hard to tell if i slept better not least cos of fucking around with it as it leaked, but obv just the beginning.
― LocalGarda, Tuesday, 28 October 2025 08:11 (seven months ago)
I'm a side sleeper with a full mask and it hasn't been a problem. The first few nights took some adjustment but after that I was hooked. It took me a while to get the straps tightened the right way, and when I replace the mask sometimes it takes me a couple of days to get it right again. In the three years I've had it I've only slept maybe 5 nights without it. I think I took to it extra easy though. I don't mind stuff pressing against me, I kind of love being in an MRI machine. I usually nap.
― Cow_Art, Tuesday, 28 October 2025 10:38 (seven months ago)
I think it's maybe just understanding how it fits really. When it was secure I didn't mind it so much and I could definitely feel it helping me breathe, even years before I knew I had sleep apnea I would be about to fall asleep then just stop breathing and gasp and wake up. I have pretty mild apnea but have had years of stomach, sinus and reflux problems and it sounds fixing the apnea could improve those, it seems to be more accepted that these are interlinked nowadays.
― LocalGarda, Tuesday, 28 October 2025 10:50 (seven months ago)
Pretty frustrated with this so far. The mask just doesn't seem to fit me, like there's air leaking towards my eyes or from the bottom at my chin also. I told the doctors this and they said there are other masks and put an appointment in then the guy just gave me the same one with different straps, which is making me quite annoyed now as if I move my face a centimetre it leaks.
As a result I haven't really worn it so much and I am due to talk to the doctor Monday, who I assume will tell me off about this but I'm actually pretty annoyed about the mixed messages and then being ignored when I said the mark doesn't fit.
Feel like just not bothering but will probably try to see what they say at least.
― LocalGarda, Friday, 28 November 2025 23:25 (six months ago)
I couldn't manage the full mask - I've had the nasal pillows for the past few years and it works fine for me.
― Zelda Zonk, Friday, 28 November 2025 23:42 (six months ago)
i was diagnosed earlier this year with severe sleep apnea. the sleep test recorded something like 30 incidents per hour which tbh explains a lot. i've been using the nasal pillows and they work great. i'm a side/back sleeper though, haven't slept on my stomach since i was a teenager probably.
― c u (crüt), Saturday, 29 November 2025 00:04 (six months ago)
I remember struggling with the mask a lot at first; I think I was over tightening it in an effort to stop leaks but this was causing the cushion to buckle and leak worse. There are also different sized masks. The first few months were mildly irritating at times and now it’s all automatic, I don’t think about it.
― Cow_Art, Saturday, 29 November 2025 02:11 (six months ago)
I figure it's just a case of trial and error, just kinda annoys me I told them this mask doesn't fit and the solution was "let's try it again"
That's interesting about the other options tho, I'll see what they say.
Have you been feeling better, Curtis? I think I am only eight incidents per night so it is mild enough, but I've had chronic illness for years and not much proper diagnosis so I feel it is possible this is the cause or a key part of it.
― LocalGarda, Saturday, 29 November 2025 08:24 (six months ago)
A colleague at work has found using her CPAP machine life changing. She hasn't found her GP/consultant overly helpful though but has had advice around masks and so on from one of the online support groups - will find out which one for you.
― djh, Saturday, 29 November 2025 09:40 (six months ago)
Too tight is definitely an issue, air leaks are very vexing, I did find a set up that works for me eventually but even now I have the odd night where the thing just decides to be a dick
― Slouching Towards Benylin (Noodle Vague), Saturday, 29 November 2025 10:55 (six months ago)
it basically seems like either it's too loose or else i tighten it loads and that's also a diff problem.
thanks, djh! i feel like one person who called me was v much saying we can try diff masks then when i went in person it was just giving me the same one again.
― LocalGarda, Saturday, 29 November 2025 11:02 (six months ago)
Another recommend for pillows here. Just nice and simple, and soft.
― bert newtown, Saturday, 29 November 2025 13:44 (six months ago)
Have you been feeling better, Curtis?
100% - i have more energy during the day, i no longer wake up disoriented and dehydrated, and my chronic illness symptoms have improved
― c u (crüt), Saturday, 29 November 2025 13:51 (six months ago)
My reading was 29 and they said that was mild.I thought i do that 29 times an hour are you fucking kidding?
that's mild?
I get it down to like 0.6 a hour with the machine. I get worried if it gets over one an hour for more than a couple if days.
― bert newtown, Saturday, 29 November 2025 14:00 (six months ago)
Airfit N20 is the mask for me. Took years and multiple brands and styles to settle in one stick with it. I don’t. Other with insurance or medical equipment suppliers they’re the worst. Websites like cpapshop will accept mask returns so you can try a few.
― dan selzer, Saturday, 29 November 2025 17:05 (six months ago)
I messed up while packing and forgot the power cord. Two nights sleeping without and I was immediately back to headaches and heart-pounding nightmares.
LG, when I was trying out different masks on my own, I found a "fit pack" on Amazon that had all the different options of nasal pillows. Small was definitely correct for me, but Mr. Jaq ended up being medium wide.
― Jaq, Saturday, 29 November 2025 17:14 (six months ago)
Have had a really bad time with the CPAP overall. I got a different mask but it just comes off and leaks as soon as I try to sleep. Like I've been crap at wearing but mainly because it's just farcically not working, just air going everywhere no matter what I try to do. Tonight it started making a squeaking noise from me drooling, lol.
Beyond that I just find it pathologically really difficult to attach a machine to myself dutifully at a time of the day when I just want to sleep and not think about my problems. In spite, or perhaps because of apnea I always fall asleep easily.
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. The fact that they monitor use of the machine or me not using it also weirds me out and makes me rebel a bit I think. I've talked to my therapist about it all, idk it's just a huge problem.
In general the whole thing just makes me really angry, at myself for lacking the will power to push through it but also at the total lack of clarity about what to do, and the stupid fucking machine and how it doesn't ever appear to work.
I am at the point of giving the machine back and just being left alone. I sent a mail to the clinic trying to explain all this and they forgot to pass it to the doctor in advance of my last call, which made me want to throw my phone out the window.
― LocalGarda, Thursday, 4 June 2026 23:59 (four days ago)
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.
― Ned Raggett, Friday, 5 June 2026 00:00 (three days ago)
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.
― LocalGarda, Friday, 5 June 2026 00:05 (three days ago)
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?
― werewolves of laudanum (VegemiteGrrl), Friday, 5 June 2026 01:31 (three days ago)
I couldn't handle the full mask, very happy with just the nostril things now.
― Zelda Zonk, Friday, 5 June 2026 01:48 (three days ago)
I couldn't handle the thing either, felt like I was being waterboarded
― underminer of twenty years of excellent contribution to this borad (dan m), Friday, 5 June 2026 02:09 (three days ago)
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!
― underminer of twenty years of excellent contribution to this borad (dan m), Friday, 5 June 2026 02:10 (three days ago)
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.
― mick signals, Friday, 5 June 2026 02:19 (three days ago)
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.
― dan selzer, Friday, 5 June 2026 04:45 (three days ago)
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.
― 99 gram lychee (Noodle Vague), Friday, 5 June 2026 05:34 (three days ago)
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.
― LocalGarda, Friday, 5 June 2026 06:28 (three days ago)
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.
― LocalGarda, Friday, 5 June 2026 06:31 (three days ago)
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.
― dan selzer, Friday, 5 June 2026 10:59 (three days ago)
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.
― LocalGarda, Friday, 5 June 2026 11:10 (three days ago)
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.
― dan selzer, Friday, 5 June 2026 11:23 (three days ago)
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.
― Cow_Art, Friday, 5 June 2026 11:30 (three days ago)
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.
― LocalGarda, Friday, 5 June 2026 11:36 (three days ago)
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.
― xyzzzz__, Friday, 5 June 2026 12:43 (three days ago)
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.
― dan selzer, Friday, 5 June 2026 13:35 (three days ago)
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
― mh, Friday, 5 June 2026 14:18 (three days ago)
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.
― LocalGarda, Friday, 5 June 2026 14:29 (three days ago)
sadly Purple Drank is still not available on the NHS
― 99 gram lychee (Noodle Vague), Friday, 5 June 2026 14:31 (three days ago)
Another Wes Streeting u-turn
― LocalGarda, Friday, 5 June 2026 14:45 (three days ago)
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.
― dan selzer, Friday, 5 June 2026 14:52 (three days ago)
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.
― 99 gram lychee (Noodle Vague), Friday, 5 June 2026 15:33 (three days ago)
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.
― LocalGarda, Friday, 5 June 2026 16:18 (three days ago)
My apnea suffering friend got some line installed in his chest that can sense when something is amiss and corrects it!
― Josh in Chicago, Friday, 5 June 2026 17:45 (three days ago)
apnea or arrhythmia?
― mh, Friday, 5 June 2026 17:46 (three days ago)
Apnea, as far as I know. He couldn't deal with the CPAP.
― Josh in Chicago, Friday, 5 June 2026 18:32 (three days ago)
Device called Inspire.
― Josh in Chicago, Friday, 5 June 2026 18:34 (three days ago)