My CPAP machine is making my sleep even worse.
September 14, 2018 12:09 AM   Subscribe

CPAP machines; please tell me it gets better with these things or that there's something I can do differently, because I'm at my wit's end and getting worse.

Here's my history with these things; about eight years ago I was diagnosed with moderate sleep apnea. I was given a machine with a full face mask, but found it virtually impossible to sleep while wearing it because I found it horribly claustrophobic. It ruined my life for a couple of months, and I returned it just before the trial period ended. Since then I have lost weight, had surgery for a deviated septum (which was a total waste of time, and in fact if anything my nasal passages feel more obstructed than ever) and worn t-shirts with tennis balls sewn on the back to try and keep me on my side in an attempt to alleviate the problem, but ultimately nothing worked.

A few months ago I gave up, accepted the fact that I was going to need a CPAP, had another sleep test, was again diagnosed with moderate apnea and again was given a machine, this time with a mask that only covers my nose. This mask is much more comfortable than the first one, and to my surprise I have not had much difficulty falling asleep while wearing it, but it's been about a month now and the quality of my sleep has gotten even worse. Almost immediately I started waking up a few hours after falling asleep with my nose almost completely plugged, so I upped the humidity level (my model of machine has heated tubes, a humidifier, the whole deal). This seems to have helped somewhat with that issue, but it's been about a month now and I am still either waking up in the middle of the night (I'm typing this at three in the morning) or waking up after what is ostensibly seven or eight hours of sleep completely exhausted and feeling even worse than before I started using the machine; I'm dizzy, sometimes have a headache (not something I'm prone to in general) and this past week I've been experiencing slight auditory hallucinations and making mistakes at work because I'm so tired. I'm also grinding my teeth into dust by the feel of it (I have a mouthguard, but have always found that even more uncomfortable than the mask and almost always spit it out or otherwise remove it during the night).

Beyond scheduling a fellow-up appointment with the sleep clinic, does anyone have any advice about what might be wrong or what I might do differently? Right now this thing feels like a torture device.
posted by The Card Cheat to Health & Fitness (25 answers total) 6 users marked this as a favorite
 
It sounds to me like the pressure isn’t set high enough. You really really need to get the memory card into the hands of a diagnostician.

All the tricks in the world aren’t going to help you until that part is sorted.

Beyond that all I can tell you is that after a few months getting used to it I’ve been using mine every single night I’ve had access to power for 18 years. It is possible, at least, to get past initial teething problems and use it long term.
posted by Tell Me No Lies at 1:46 AM on September 14 [6 favorites]


I have never had a CPAP but a friend recently got one. From what I learned from him, it can take time to get the fit or the settings right. He had frequent appointments in the weeks after getting his and missed time at work due to lack of sleep until they were able to get it right. You may need to have follow up appointments so your medical professionals can find how to make it work for you.
posted by synecdoche at 4:54 AM on September 14 [1 favorite]


I'm a relative newbie to using a CPAP (two months of steady nightly use with the nose-only mask after a diagnosis of moderate sleep apnea), but I agree on getting the data on the memory card looked at - in conjunction with a CPAP titration study to determine the optimal pressure for keeping your airway open. My understanding is that this is the necessary follow-up step to make sure it's doing what it's supposed to.

As it happens, I quite literally just walked in the door from my overnight CPAP titration study - I've got a followup with the sleep doc in two weeks to check in on the results (and the diagnostics from the memory card on my home machine) to determine whether we need to fine tune the prescribed pressure (it's been going well for me so far - suprisingly so - so probably just minor tweaking if any).

Those two things should be able to tell you what needs to change - it does sound like you're not getting the pressure you need.
posted by mandolin conspiracy at 5:05 AM on September 14 [3 favorites]


Are you following recommendations regarding cleaning the mask, tube, and reservoir? Mr. DrGail pooh-poohed the need to clean the various bits, even after experiencing persistent allergy symptoms for weeks on end. Once he started cleaning the machine consistently, the allergy symptoms mysteriously disappeared. Imagine that.
posted by DrGail at 5:32 AM on September 14 [6 favorites]


If your set up is like mine there's
1) the pulmonologist or other doc who sent you to the sleep clinic
2) the sleep clinic
3) the company where you went to get the CPAP machine & accessories which provides support for the CPAP.

Start with #3. Call their customer service number, talk through the issue, ask how they can help.

I haven't needed to provide a memory card to anyone - they automatically get the data from my machine. YMMV.
posted by bunderful at 6:29 AM on September 14


I have been wearing a full face mask for maybe a year.

It does, indeed, wake me up often: most often when I have rolled over and then rolled over again, and the hose loops around my neck.

You can download a free (and very good!) application called Sleepy Head which will read the data on your machine's card. If they didn't give you a card, buy a blank one and pop it in there, and the data should just start getting written to it. There are a few discussion groups where amateurs will examine your graphs and make suggestions. Usually these are along the lines of "Increase your starting pressure and see what happens," based on personal experience and the wisdom of the crowd.

Also, I agree with bunderful in the comment above. You can always check back in with your usual doctor, or see whether there's a sleep specialist that your heath insurance will pay for. (There was one for the sleep lab who evaluated my test results. My doc didn't mind that I talked to her before he wrote the Rx for the machine.)
posted by wenestvedt at 7:21 AM on September 14 [2 favorites]


Are you taking all the parts that should be washed and washing them in hot soapy water every week? Any invisible hint of gunk growing in there might be enough to trigger an allergic reaction and cause your night time congestion. Have you swapped out the air filter recently? You could try some allergy meds and decongestants for a couple of nights to see if that would help.

Is your machine one that automatically adjusts air pressure? My husband needs a relatively high air pressure, and he tends to open his mouth a little when he's sleeping, so that air is blowing in his nose and out his mouth and he still has apnea episodes, which the machine responds to by ramping up the air pressure, which leads to his mouth opening more, etc. A chin strap helped fix this.

I agree that calling the equipment supplier would be a reasonable first step. The forums at CPAP Talk might also have some ideas for you.
posted by beandip at 7:23 AM on September 14 [2 favorites]


I tried CPAP and fucking hated that thing with my life so I ditched it. Meds and a visit to a behavioral sleep doctor helped a little. A couple years later I realized that, although CPAP is the first line treatment for apnea, my insurance will also pay for an oral appliance. (Like a night guard, but it holds your jaw in the right place so your tongue doesn't obstruct your airway.) I got one through a sleep dentist and it seems to work well. Depending on your insurance and exactly what type and degree of apnea you have, it might be worth looking into.
posted by clavicle at 9:10 AM on September 14 [3 favorites]


Get in the habit of blowing your nose immediately when you wake up stuffed so it becomes second nature and you can do it in your sleep. Put the tissues as close as you can to your machine. I find that yawning helps me if my pressure seems off, especially if I close my mouth as I am breathing out and finish exhaling through my nose. This is something I now do unconsciously.
posted by soelo at 10:36 AM on September 14


I'd really encourage you to get back in touch with the sleep clinic. If your machine is a newer one, it will 99% have a 'data card' you can take in and they can review. This data can allow them to make adjustments to the machine, and see what is going on with you breathing. In amazing technical detail. Sometimes a CPAP can correct ONE kind of apnea (obstructive) and CAUSE another (central) and this data can help assess this, as well as assessing if your pressures are high enough. Some machine are setup to adjust automatically as well. A repeat sleep study may not be necessary. Hang it there, this can (and should) get better!
posted by Northbysomewhatcrazy at 11:07 AM on September 14 [3 favorites]


I work in sleep medicine and I can think of many reasons for your troubles. I would need to see the data from your machine to investigate all of them. Sorry to not be much help but answers for your difficulties are unknowable without more information. If you haven’t had an in-lab titration sleep study to determine the proper settings for your machine then you may need one. Or you may even need a BiPAP. Your sleep medicine specialist should be of help. Don’t lose hope.
posted by teamnap at 11:53 AM on September 14 [4 favorites]


Hi everyone...thanks for all of the responses; today is a crazy day for me because my wife is leaving on a two-month trip and I've been busy helping her out with all of the last-minute stuff that entails, and now I have to drive her to the airport. I'll respond to your questions and answers tomorrow (and to the MeMails people have sent). It's all very helpful and I'm glad to hear there are multiple avenues to pursue.
posted by The Card Cheat at 2:24 PM on September 14


One possibility to at least consider is that the nose-only mask just isn't going to work for you.
posted by Miko at 5:57 PM on September 14


Like clavicle, above, after trying about 5 different masks, I ended up having to ditch the CPAP and get a dental appliance from a sleep doctor. Much less invasive and distruptive to sleep and works as well for me (based upon data from subsequent sleep studies). Not everyone has good luck with CPAP.
posted by skye.dancer at 7:00 PM on September 14 [2 favorites]


Try an APAP (adjustable pressure, rather than constant) and some nasal pillows. Also make sure that your machine has a humidifier (most do now) and that your hose is insulated.

Or get a dental appliance. BUT DO NOT GET AN OASYS. They are uncomfortable as fuck and seriously aggravated my TMJD. Honestly it was worse than any CPAP mask I ever tried. Every morning I woke up and my teeth ached.

My new dentist uses the Ripple system, which looks far more comfortable. I haven't tried it yet, but I'm going to, now that I have insurance!

Also something to consider with just a nasal mask is this; are you a mouth breather or do you tend to drop your jaw while sleeping? Because that kind of negates the entire concept of PAP machines. If that's the case, then you need a jaw strap or a full face (okay really nose and mouth) mask.

Back when I was first diagnosed I found CPAPtalk.com to be an INCREDIBLY helpful resource. They're incredibly knowledgeable AND they have mask testing trade groups. Now that I'm a noncompliant patient (diagnosed with moderate-severe OSA at 240lbs, diagnosis rescinded at 160lbs, and now I'm 200lbs) I just make sure I never ever sleep on my back because I can't tolerate a CPAP/APAP). Also both of my parents have sleep apnea... and my dad died the night he fell asleep without his CPAP mask on at age 52 (to be fair, he was 5'10" and weighed 450lbs).

FINALLY, if your CPAP machine has a card, you can often get the reader and software yourself so you can monitor your own data. I did that for a while and it made me a little more compliant (being a data junkie) and interested, so you could try that as well. Good luck!
posted by elsietheeel at 5:32 PM on September 16 [2 favorites]


Hi...thanks again for the responses. I apologize for the delay in following up; as I said in my last comment, this past weekend was a very busy one for me, and things haven’t gotten any better with my sleep. On the contrary, I called in sick today and yesterday because I feel awful. It’s probably a bit late, but to address some of the points/questions people here have raised;

- yes, I’ve been cleaning the water tub and tube once a week, as recommended in the manual.

- the pressure on my machine (an AirSense 10) cannot be changed by me, only the doctor or clinician or whatever he is, which I guess generates more profit for the clinic. I believe it’s set at a constant pressure.

- I’ve never tried an oral appliance; as I said, I have a mouth guard because I grind my teeth, but I’m blessed with a hyperactive gag reflex, which really makes trips to the dentist a fun time, and I rarely if ever last the night with the mouth guard still in my mouth. So those things sound great.

- are nasal pillows the type of mask with the tubes that go into your nose a bit? I tried those at my second study and found it uncomfortable bordering on painful.

- I had a follow-up appointment with the clinic for early November, but just called and pushed it up to late October, which is the earliest date I could get. To be honest with you, it’s hard to not think of these places as a bit of a racket; “You have sleep apnea. Fortunately for you we also sell the machines; we recommend the most expensive option!” OHIP and my insurance are covering the full cost, so money’s not an issue, but that’s kind of been the dynamic at both of the clinics I’ve been to.

- I fall asleep breathing through my nose; my dentist has told me the evidence suggests that I’m a sleep mouth breather, which would make sense because my nose is never not at least somewhat obstructed.

- I really hope I don’t need a chin strap or a full mask, because that sounds like a nightmare. I absolutely could not fall asleep with the full mask eight years ago and I doubt a strap is going to make it more comfortable. All this shit that looks like it’s from a David Cronenberg movie just to *sleep*, something most people “fall” into, like it’s an accident or something you don’t even have to try to do. Sleep has been a constant problem my entire adult life; first it was insomnia and now it’s this (with occasional insomnia on the side) so maybe I’m just not built for sleep.
posted by The Card Cheat at 10:48 AM on September 18 [2 favorites]


If you're a mouth breather and/or you're getting congested in the middle of the night then just a nasal mask probably isn't the best option for you. And jaw straps are horrible.

There are several different types of full face mask, so you might find one that's more comfortable than others. If your insurance is covering it, ask for a new mask. If that one doesn't work, try another. Ask for an APAP machine. Be annoyingly pleasant and persistent and they'll eventually want you to go away.

In the meantime, get a card reader for your AirSense 10. Go to CPAPtalk.com and read up on how to use it. The data might help you with compliance a bit. Here's a video with some hidden functions of the machine. The folks on CPAPtalk likely know how to change the settings as well.

Finally, when all of that nonsense doesn't work, you go back to the clinic, tell them you can't sleep with the damn thing on and that you want a referral to a sleep dentist so you can try an oral appliance. But check their websites first to find out which appliance they prefer to use so you're not stuck with something that won't work for you.

(The Ripple appliance is smaller and less obstructive than any mouth guard I've ever used for teeth grinding.)
posted by elsietheeel at 11:08 AM on September 18 [2 favorites]


- are nasal pillows the type of mask with the tubes that go into your nose a bit? I tried those at my second study and found it uncomfortable bordering on painful.

The nasal pillow for CPAP use that I have looks like this and is made from very soft silicone - while I'd prefer not to be using it at all, I don't find it uncomfortable, but this is obviously a YMMV situation. Unless you're thinking of a nasal cannula.

My second sleep study (the titration one) was done with the nasal pillow I use with my CPAP to see if it's delivering the pressure I need, etc., whereas my first study (to determine whether or not I had apnea) involved the cannula...and it was uncomfortable AF.

A friend of mine recently went the oral appliance route after trying a CPAP. I've not had too much difficulty tolerating the CPAP, but it was driving her insane, so the oral appliance was a godsend. It's been interesting to see the difference between what works for two different people by comparing notes.
posted by mandolin conspiracy at 11:16 AM on September 18


the pressure on my machine (an AirSense 10) cannot be changed by me

Have you enabled the sooper-seekrit extra menu?! I believe the CPAP Konami Code is "Hold the round button and the Home button (on the bottom) down at the same time. After about 3 seconds the menu unlocks. You then have access to everything." (Discussed here, for example.) There's also the Clinician's Manual available all over the entire Internet; just bung "AirSense 10 Clinician's Manual" into Google for a current download link; it explains all the menu options.

I did this and changed my starting pressure by like two points, and that helped.
posted by wenestvedt at 1:17 PM on September 18 [2 favorites]


The one truly sweet thing about the full face mask is that in the winter, I can descend like a submarine entirely under the covers for the whole damn night.
posted by wenestvedt at 1:19 PM on September 18 [3 favorites]


8 years ago is eons in the design of the face masks. You might find you have many more and better options now than existed then. My sleep doctor had a whole inventory of masks you could look at and try on in their office - maybe that's uncommon - but chances are someone makes a full face mask you won't hate. If you open your mouth during sleep, a nasal mask is just never going to help, so try exploring some new options for full face.
posted by Miko at 1:34 PM on September 18 [3 favorites]


Thanks again to all...I spoke with the store I got the mask from yesterday, and they were actually very helpful. The woman I spoke with had looked at the data the machine had sent in, observed that I've actually been using it regularly, suggested using it for a few hours a night (instead of the entire night) and working my way up if I keep waking up in the middle of the night. She also agreed that I might require a full mask and said I could come in any time to

Last night I used wenestvedt's "CPAP Konami Code" to up the pressure a bit (thanks for that), neti-potted my nose, meditated and stretched before bed, used nasal strips to open the passageway further...and the end result was that I still woke up tired, but not exhausted at least. So I don't know. I probably need a full mask; the one I have is more comfortable than I expected, so perhaps this will be true of the full face model(s).
posted by The Card Cheat at 7:49 AM on September 19 [4 favorites]


Glad you unlocked your machine! Now if only there was an option to disable the SCREAMING LED LIGHTS whenever you power it up...

...the end result was that I still woke up tired, but not exhausted at least....

My first few weeks were like this: I didn't leap out of bed like a pharmaceutical commercial, but I stopped nodding off behind the wheel and at the dinner table. Which, you know: a definite improvement.

For a while I still woke up at some point and caught myself pulling off the mask, but that passed quickly.

A year later, I sleep better, quality-wise, but I still hit the sheets at 11:30 and get up at 5:40 so my problems are more about bedtime than soundness. It feels hard to believe at 3:00 AM when you wake up, but I am very confident that you will eventually get used to wearing a mask.
posted by wenestvedt at 9:05 AM on September 19 [2 favorites]


Update; everything is worse and this machine is a fucking nightmare. I’m running out of sick time because of all the work I’ve missed.
posted by The Card Cheat at 9:00 PM on September 24


It sounds like you either need to get super serious about getting attention from your doctor to help solve these issues, or get a new sleep doctor.
posted by Miko at 6:33 AM on September 25


« Older How much rainfall is bad - Hurricane Florence...   |   seventies US TV movie featuring a haunted... Newer »

You are not logged in, either login or create an account to post comments