Your sleep apnea/CPAP thread

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...

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.

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.

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.

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.

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!

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.

Thank god, mine doesn't look like THAT.

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".

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.

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.

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!

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.

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.

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.

Sucks, Ned. Did they tell you if you have central or obstructive apnea? I guess the snoring points to the latter.

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.

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...

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 ...

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.

I don’t know what to do. I know the odds of having an issue with your machine are slim esp if you’ve never used ozone cleaning, but in starting to have perhaps psychosomatic symptoms.

I'm seeing CPAP equipment in the drugstore recently, not just hoses and masks, but the actual machines. You need a prescription for the machine, but I'm happy you don't have to go to the supplier for new masks and such.

When I last had a CPAP about 8 years ago, they had to send a rep to my apartment to set it up or change the settings. Do they still do that, so that I'll have to actually clean the place so they don't know I live in filth?