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[CPAP] taking mask off in sleep - should I just give up?
#1
taking mask off in sleep - should I just give up?
TLDR – had cpap 2 plus years but have continually struggled with it. Managed to overcome several problems and AHI has improved but still left with the problem of removing the mask whilst sleeping so only getting 2 or 3 hours sleep max on machine. Latest phone appointment with hospital gave suggestion that I just stop using the machine as I’m never going to be able to overcome this. Should I just give up??
 
Details
Apologies for the length of this but I am really struggling with my cpap and have been since I got it some 2 plus years ago.

I’m a side sleeper, but when I first got the machine I couldn’t work out how to sleep on my side with it as the mask always moved and got leaks so had been using it sleeping on my back.  This was a bit of a disaster as had real difficulty getting off to sleep in this position as well as feeling claustrophobic in the mask coupled with sudden waking up feeling I was choking. And the recurring theme of taking the mask off while sleeping meaning I was actually only wearing the mask 2 or 3 hours max, often much less. During this period my AHI was getting worse and was up about 20 and occasionally higher.

Since about last October I’ve worked out how to sleep on my side with the mask on and there has been improvements – I’ve largely managed to overcome the claustrophobia and can usually fall asleep with the mask much more easily, my AHI numbers are much better – generally averaging out to about 2/3 and I’m not suddenly waking up feeling I’m choking. BUT I am still taking the mask off in my sleep every night and so usually only managing about 1 to 3 hours sleep with it on. I have had one night where I slept for 7 hours and woke up with my mask still on but that’s it.

Being in the UK, all my treatment is through the NHS. All support has been through phone appointments and advice has largely been to just keep on trying. Except for the most recent appt, when the person I was speaking to (no idea whether nurse etc but definitely not a doctor) said well you’re never going to get used to it so do you just want to stop using it. 

Do you think this is the case that I am never going to be able to consistently use it for the recommended time for therapeutic effect and I should just give up trying?? Do you have any suggestions on how I can try and improve things? 
I’ve included my most recent chart.


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#2
RE: taking mask off in sleep - should I just give up?
Hi marsaili,

welcome to apneaboard.  glad you found it.

Let's infer from you taking the time to come ask the question 'should I just give up?' that you are interested to continue and overcome this thing.  Smile

here are some thoughts ... sorry for a long reply

I wonder if you have always used this same mask over the 2 years?

* maybe this mask doesn't suit you.  Your perseverance to stick with the mask and try to make it work is commendable. But after all this time, maybe it's time to try something else.

If you have the latitude to try something different, then I might look for a lighter weight solution.

I'm in the U.S. on private insurance, and given the replacement schedules for masks and supplies, I could try something different at the replacement intervals, and that's what I did when I was still trying to find the right mask for me.  

You might be aware from whatever sleep study was conducted whether you are a mouth breather or if they simply gave you a full face mask by default.   At any rate, I started with an F10 myself (similar to yours, and it was a struggle for me though I got it to where I could live with it).

Then I moved to a Simplus which I found to be a bit easier to wear and I had a much better experience using it.  It was a lighter weight mask, and seemed to be softer or perhaps just less rigid.  I had more comfort and a lot less wake-ups from the mask moving out of place when I moved at night.

If you are not a mouth breather, then you might go a step further and try some sort of nasal mask.  That will feel less claustrophobic because it doesn't cover so much of your face.  

But I will also say the holy grail for those of us who found it is nasal pillows.   (Tim: “A what ?”    Arthur: “a… a gaa.a..gaa… gaa.”   Tim: “A Grail !?”  Arthur: “Yes, I think so.”  Tim: “Yes !”)

Sometimes people treat us like we got assimilated into the borg, but once I tried the P-10 nasal pillows I never looked back.   Did try the P20 when I got a new machine, and within 2 days I made the call to get my P10s back.  They are the lightest weight, easiest to wear headset I have found.  That's not to say there aren't other solutions people like as much, but for me I stopped looking for other solutions.

One key discriminator for lighter weight masks (nasal mask or pillows) is they don't cover your mouth.  So if you are a heavy mouth breather then it would be more complicated.   Some would say it's a show stopper but I am proof that it's not a showstopper.

I started with FFM because my sleep tech tried a nasal mask first on my titration study night and I couldn't keep my mouth shut once I fell asleep. So I began with the F10.  As you know from the F20 it's a pretty big fairly rigid mask. You move, it leaks. Move more, it comes off.  It's not just you.

I fought leaks for a month or two, and eventually was able to live with it even though I still woke up 2-3 times every night and had to adjust the mask and go back to sleep. That said ... in my experience I got enough relief that I was happy if that was as good as it ever got.  

good place to ask ... for the 1-3 hours you get each night (maybe two rounds of 1-3 hours) ... is it making a difference in how you feel during the day?   That's the pivotal question on whether you want to keep trying or not.   If you are getting at least some relief from the misery and tiredness then let's figure out how to get you more better sleep.  

I was getting some relief from day 1 (which is a little unusual for people) and at each stage if that was all I got then I would keep doing it for that bit of additional relief. Just not falling asleep or wanting to fall asleep each afternoon was a huge change in my quality of life.  And I kept trying in stages to go for some thing just a bit better.  If you are on that path, then don't despair.  And don't listen to someone who is tired of listening to you and so says you should give up (and go bother someone else with your problems).

So my story continues, not because I like to hear myself type, but because I want to show you that it can get better, you have to play with different ideas, and at each stage determine for yourself if it is still worth doing.

I wanted to try for better, and that's when I switched to the lighter weight Simplus, still a full face mask.  That was more comfortable for me and I woke up less often with air leaks.  Quality and continuity of sleep was better.

Still had occasional mouth breathing issues though, and I looked into a chin strap.  Wow, that eliminated mouth breathing for me.  I was loving this stage of my therapy, but then I wondered ... if the chin strap truly handled my mouth leaks, then could I maybe try to use nasal pillows.

Tried it out and this was a step up to a whole 'nother level of sleep comfort.  Nasal pillows and chin strap.  Super light weight to sleep in, and the chin strap kept the mouth breathing at bay.  Did leave marks on my cheeks in the morning, and any time I had meetings to attend I had to wake up early enough so the marks would go away before I had to see people face to face.

And then I got to reading about a technique described by @DariaVader in which we learn to seal our mouth by pressing the tongue to the roof just behind the teeth.  With practice, it stays there and blocks air from coming out of the mouth.  I learned the technique and eliminated the chin strap.

So I know it's possible to keep at it, try different things, see some improvements, try some more things, and keep getting better.

Therefore my message to you marsaili is if you are the least bit inclined to keep trying, then don't give up.  If all your advice up to now from the NHS is keep doing the same thing, see you in a few months, and you have been doing the same thing over and over hoping for different results, well, you know the rest of that quote.  

With what you will learn here, and ideas from lots of great people who have been where you are now .... you will try different things and some of them will make an improvement. Then you will try the next things and one of those will score a win for you. And so on until you reach a place where you are happy with your therapy.  It's worth a shot, yes? 

You took a big important step by deciding to take charge of your own therapy and engage here. That's a mind shift that will make all the difference.  No disrespect to all of our doctors but they don't sleep with us every night. If we're lucky we see them once for fifteen minutes every few months.  Here you are engaged with a community of fellow apnea sufferers and you can get near real time next day *non-medical* advice and suggestions.  There are lots of others in your boat with ideas and experiences to share.  Who feel like you feel and know what you are going through. And who have overcome lots of common problems with our imperfect CPAP therapy. And who will celebrate small victories with you each time you rachet up your game. 

so, TL;DR ... tell us about what you have tried, mouth breather or not, don't be discouraged by the months and maybe years you kept banging your head against the wall doing the same thing when it wasn't working, and get ready to try some new ideas.  What have you got to lose?

saldus miegas
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#3
RE: taking mask off in sleep - should I just give up?
Hi marsaili,

Welcome to the forum

First yourin pressure is in conflict with your EPR use I. That a min pressure of 7bis needed for EPR to be fully functional. Also your flow limits are marginally high. That and you indicated you are having difficulty in general with your therapy.

I'd like you to try
Min pressure=8 to see if that helps.

Please try that and get back with us.
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#4
RE: taking mask off in sleep - should I just give up?
try some different masks. I try at least 7 masks before I find the right one. Airfit p10. I still try some new masks if I have Chance.
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#5
RE: taking mask off in sleep - should I just give up?
Hi Gideon

thank you so much for taking the time to respond, its much appreciated. I will try the new min pressure tonight and see how I get on.

In the interests of becoming more educated about my sleep apnoea and using cpap, what do you mean (or can you point me to something I can read about) when you say that my flow limits are marginally high and my min pressure being in conflict with my EPR? 
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#6
RE: taking mask off in sleep - should I just give up?
the comment about the EPR and min pressure is just that at a min pressure or start pressure of less than 7, the EPR does not reduce the exhale pressure by much because the machine can only reduce the exhale pressure to 4. If you had a min pressure of 5, the initial EPR pressure relief would only be 5 minus 4 = 1. But at a setting of EPR=3, the exhale pressure would go to 4 regardless of whether you have min pressure of 7 (a congruent/consistent difference of 7-4 = 3 pressure relief). That means any setting under 7 will result in something less than 3 pressure relief.

if you did set your minimum to 8, then the exhale pressure is reduced to 5 (giving your every breath a relief of EPR=3).

Some people use EPR settings of 0, 1 or 2 instead of 3. If you are one that wanted to do this, for EPR=1 you will get the relief of 1 for any setting over 5. For EPR=2 you will get the full relief of 2 for any setting over 6.

Hope this helps.

QAL
Dedicated to QALity sleep.
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#7
RE: taking mask off in sleep - should I just give up?
Hi saldus miegas


Thank you so much for taking the time to reply. You have posed some really great questions and made me engage the old grey matter!

Frustratingly I had typed out a whole screed of a reply and have somehow managed to hit the wrong key and it all to disappear! Here I go with my 2nd attempt.

-     have I always used this same mask over the 2 years?
I have also used the Resmed F30 and ResMed P10 Nasal.

The P10 was the first one I tried after difficulties with the F20. I am a mouth breather but wanted to see if a nasal mask could work for me. I soon discovered that it wouldn’t as the main reason I’m a mouth breather is because my nose almost always has some degree of congestion. This is something I had seen my doctor about previously and had been prescribed several nasal sprays (one of them beclamethazone?) which had never really made any difference. So I don’t think nasal masks would be suitable for me.

Out of sheer desperation, I ended up purchasing the F30 myself after being told on my phone review that there were no other alternative masks! This was initially an improvement over the F20 as there just wasn’t the same bulkiness and easier to keep in place. However, I started to feel that the nasal cradle thing was impinging on my nostrils and restricting breathing through my nostrils. I’m aware this was more likely psychological than actual but it triggered the old panic and anxiety again. So it would appear I have a “thing” about perceived restrictions around my nostrils (the things you find out about yourself using cpap!).

This took me back round to the F20 again. I don’t like the general unwieldiness of the mask and the ease with which it can shift causing leakage. However, I do appreciate the space around my nose/nostrils.


-     am I getting any relief from the 2-3 hrs I am currently getting

Short answer – no. But it is more complex as I have other health conditions which can affect my fatigue, so it is difficult to say for sure. When I had the miraculous 7 hour sleep with mask remaining on, I did, for wont of a better word, feel “lighter”. But might have just been from the shock of managing to wear my mask all night!

When I was reading your reply and other posts I realise that I actually know very little about my own diagnosis and treatment. I had a home sleep study, followed by a letter diagnosing me with moderate(I think) sleep apnoea. The cpap machine was delivered a few weeks later and then you were expected to just get on with it. There was no titration study, no indication of what pressures/settings would be best and no mask fitting. I am often asked on my phone reviews whether my mask is fitted ok and to be honest, I have no idea. I have never been shown what a correctly fitted mask should feel like. To be fair, this all happened when covid lockdown started. But despite being out of lockdown, as in so many spheres, there is no return to the “old” normal.

-     do I want to continue?
yes – assuming its not a useless cause. I am well aware of the potential health risks for untreated sleep apnoea and as my dad had a heart condition this gives me motivation. Plus I really want to be able to drive again. Also, what is the alternative to CPAP? Is there one as I’ve certainly not been given any alternative?
 
I hear what you’re saying about trying different masks, but that option doesn’t seem to exist with the NHS. I would need to purchase them myself and I don’t have a lot of funds just to try masks on spec. There are so many out there I wouldn’t know where to reasonably start. You mentioned the Simplus ffm and I’ve had a look at it on the internet and at first glance it looks very similar to the F20 I’m currently using. Do you think there is much difference between the 2?
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#8
RE: taking mask off in sleep - should I just give up?
I'm a relative newbie having only been using CPAP for 4 months and I was given the same F20 mask that you are using.
It took me a couple weeks to fully get used to it. I don't take the mask off, but every night there was an average of about 40 minutes of large leaks reported by the machine. I think I dislodge it, perhaps trying to pull it off partially in my sleep. So I found a private supplier (#26 in the list here onsite) that will let me buy a mask with a risk free 30-day trial on something different. Meaning that if it doesn't work out, I can refund or exchange it for something else. So I'm trying a P30i. Hated it the first day, but by the third night I'm getting great results and also hardly any leaks. Sleeping even better.

So, if there is a DME or private supplier that will give you a 30 day trial of sorts and a way to return it if the new mask doesn't help, you can put those funds to a different mask. Bottom line is you might not have to pay too much out of pocket to find the right mask that works best.
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#9
RE: taking mask off in sleep - should I just give up?
hi marsaili, 

you know, my experience was f10 versus simplus and I found the simplus to be a softer feel and more comfortable. It seemed to have a bigger cushion and felt less rigid.  My experience with this is many years ago. 

I can't really speak to the f20.  after reading your post, I poked around a bit and I agree with you the f20 and simplus mask cushions do look very similar.  So of course I searched for a simplus vs f20 review, and the one I found said the guy actually preferred the f20.  So I can't really recommend you put yourself out to try a simplus.  Simplus is an old mask, and maybe it was a winner versus similar vintage masks (f10) and the world has gotten more comfortable (f20). 

I bet there are some folks on the forum who have opinions about simplus vs f20.  

sorry I can't be more helpful on that. 

Glad to hear that you were able to try the P10 pillows even if they didn't work out for you.  If you still have them around, you might try them out again but this time with a chin strap.  That was helpful for me to cut way down on mouth breathing.  These are cheap, in the US about $15 on magazon. My progression was full face mask to nasal mask added a chin strap then to pillows and eventually dropped the chin strap ... done gradually over time.  Each step I was able to get used to the difference and then try something lighter.  Also the daria vader tongue-to-roof of mouth technique proved to be helpful as I got the hang of it.  That doesn't cost anything and is worth looking into. 

Another thing you will read about here is mouth-taping.  I'm old fashioned I guess, but I can't imagine taping my mouth shut.  I seem to recall people even saying it was dangerous, but by now there seems to be a whole cottage industry sprung up around helping people tape their mouths shut.  I have no experience to offer on that approach. And I wouldn't point you in that direction, either. 

hope you stick around and engage a little while you are still inclined to keep trying.  Trying with a great support community is bound to be better than struggling on your own as you have the past 2 years.  See how far you can take it with some help of like minded folks here.  

If you get 85% better sleep and 15% more able to cope, knowing what others also experience, that might close the gap.  I hope you do get to sleep better and drive again, too. 

best wishes marsaili, 

saldus miegas
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