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Having major trouble and getting very frustrated trying to use CPAP machine - help?
I have, for a number of years, had problems sleeping. Although I'd (most of the time) sleep for a normal amount of time (7-9 hours), I'd frequently wake up feeling like I hadn't slept at all. About 3 years ago I met a woman who now would be my wife if we didn't have to postpone it, and she confirmed that I have a major snoring problem (I knew this already) and that frequently I could stop breathing entirely at points while sleeping. At the start of this year, it got markedly worse and on talking to my doctor about it again, they finally referred me to a sleep clinic.
Sleep clinic appointment comes along, and they give me the stuff to do a take-home sleep study, and with all that stuff strapped to me I have what is literally one of the worst nights of "sleep" I've ever had. Could barely move at all that day, I just felt so much like a zombie. I then show up to my follow-up appointment and I'm extremely surprised to be told that I have "mild" sleep apnea symptoms at best, and that because I have such "mild" symptoms the best option to try at that time was a CPAP machine.
That was over 2 months ago.
I have been given a Resmed airsense 10 autoset machine, with a resmed airfit F20 medium sized full-face mask.
I tried using the machine every night, as instructed, but typically after 1-2 hours of having the mask on I'd have to take it off and then sleep without it as I previously did. This went on for about 3 weeks before I just stopped using it. Literally could not fall asleep with it on.
I have NUMEROUS problems with it, while trying to use it. In no particular order:
- I have to have the straps quite tight, or it gets loose around either my chin or my nose
- I cannot have it too low on my nose or it squishes my nostrils closed
- I am a side sleeper. Literally cannot remember sleeping on my back, ever. I cannot find a position on my side while wearing the mask in which I can relax, such that the mask then doesn't get pushed by whatever pillows I'm using and cuse it to leak, in particular causing it to blast air straight into my eyes.
- It doesn't seem to matter at all what combination of pillows I use (hard/soft, putting them lengthways so the mask is hanging off the edge) - even the slightest millimetre of movement while in such a position causes it to come loose around my nose and blast air into my eyes. Because I then have to remain so still with the mask on, I cannot relax with it on
- While having the mask on, I don't ever feel like when I'm breathing in, that I'm actually taking in enough air. It feels like the mask pushes my lower jaw and my lips into a certain position that then prevents my normal breathing from being able to pull in enough air, either because it pushes my lower jaw back or because it feels like I have to push my lips out into a sort of pouting face so that I can actually breathe
- Additionally, with the mask on, within literally about 5 breaths, my mouth becomes drier than the sahara desert
- Note that this feeling of not breathing properly also happens even if I put the mask on for a bit during the day, just to try to get used to it. I simply do not ever feel like I'm taking in enough air when I breathe in, and therefore have to manually take over
- With the last point in mind, because I never feel like I'm breathing "normally" with the mask on, I then end up taking over and "manually" trying to concentrate on my breathing with it on. This, of course, means that there's another reason here that I can never relax with it on - because I have to stay awake to concentrate on my breathing
- This came to a head a couple of weeks back where, even while just sat in front of my computer at home, I felt like I wasn't breathing properly, even with none of this going on - I was having to manually breathe. I got tested for covid that day (it was negative) and then went to see my doctor who diagnosed me with "disordered breathing" - apparently I was trying to manually breathe, and if I ever caught myself doing so I needed to stop and try to occupy myself with something so that I could try to stop manually breathing. This has gotten better since I've had that conversation with my GP, however.
- I had a 6 week follow-up appointment with my sleep therapist and I tried to get the above points across and I just don't seem to be able to communicate very well that I just cannot breathe normally with the mask on. I keep being told that what I'm experiencing is somewhat "normal" but I just cannot get on with this stuff at all.
- Apparently some "small" amount of leak in the mask is "normal" but when that leak is blasting air straight into your tear ducts, even if the number says it's not much, that's because as soon as it happens it jolts me up and then I either have to fiddle with the mask or just take if off altogether.
- I tried purchasing one of the mask liners sold here to see if it helped with the mask fit, but if anything that made it worse because the opening inside the mask became smaller and I had to push my lips out even more just to be able to breathe. I also tried some of those xylimelt thingies but I could never get them to stick while also wearing the mask - the mask and its straps would move those things around in my mouth, causing them to just fall off my gums inside my mouth.
It feels like with the mask on, it's pushing my lower jaw into a particular position, but in that position, it then feels like my airways get narrower... and because of that I then cannot breathe properly.
I was wondering, with all of the above in mind, whether anyone might have an opinion on whether one of the under chin masks might help with me feeling like I can open my airways properly or not, or if there's another mask or other product that you suggest might help.
I've got this CPAP machine as a trial, but despite multiple attempts at trying to use it I just cannot breathe normally with it on. Note that my sleep therapist did turn down the maximum pressure (from 20 to 10) to see if that helped, but it's done nothing for any of the problems I've been having.
I want it (or... something) to work, because I want to be able to wake up in the morning and actually feel refreshed, but it's frustrating me that it's not working, and with everything else going on in my life right now it's just another thing that's really frustrating/stressing me out and leading to me constantly feeling like crap every day...
If anyone has any other suggestions then please do let me know...
Views: 394
Replies to This Discussion
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Permalink Reply by Sleep2snore on
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I could suggest a lot of things to try to help, but there is a lack of information.
Type of machine - Resmad Autosense OK]
Humidifier - ? Have you got one with the machine?
Mask type - ?
Model of mask - ?
Full faced - ?
Nasal - ?
Nasal Pillows - ?
Firstly, turning down the maximum pressure is NOT the way to go! Not sure what they were trying to do there?
10 might be a bit low a pressure for you f you feel you are not getting enough air? There are a lot of settings on this machine that might help you a lot, but I have no idea what they have set it up to do.
I assume it is set to AUTO? Turning the setting down to 10 will stop the machine from doing very much if anything? However, I don't know what they were trying to do setting it so low? Maybe they thought the air pressure was to high for you, or was it to stop leaks? I just don't understand their thinking?
I think with the right mask, a lot of "I will do this" from you and the proper settings, you will be able to use the machine.
When I started I had a dammed awful machine, it was very noise, I had no humidifier, I had the worst mask that man in their creations could have invented, it cut into my nose, so I would wake up with a mask full of blood. I would wake up after a couple of hours with my mouth and especially my throat so dry I could breath. I had to spray water directly down my throat before I could get another breath. The first time this happened I almost passed out, I just could not get breath down my windpipe! I kept a spray bottle of water beside my bed after that. I got a humidifier after that (a log fight to get one) but I had to turn it full up and it would be empty half way through the night. This was partly due to the machines of the day and the pressure I eventually had it adjust up to 18. However, I now have the same machine as you have and life is a lot better.
I found 10 was far to low a pressure (this is what the clinic set it at) as I felt I was not getting enough air, also they had turned EPR which dropped the pressure when you breath out, it goes back to the pressure the machine is running at when you breath in, however, it lagged slightly and I was breathing in on my own before the machine caught up and adjust to its pressure. Turning this off helped no end, I don't think it is really needed unless your pressure is a bit higher up. It is a comfort thing once you find the ideal running pressure for yourself.
You have rather a lot going on. I don't know where you are in the country. Normally, if you were anywhere near Kath's shop you could have popped along to try several mask, but with Covid 19 that is unlikely to happen. Does your clinic have a range of masks for you to try?
Are you a mouth breather?
I found that Nasal Pillows were the answer for me.
I had to train myself not to breath through my mouth, also I had to buy a chin strap that was a lot stronger then any the sleep clinic could offer. I have since made it even stronger.
I don't appear to have a lot of time to look into these forums these days, but I will try to look back.
I hope we can get you using your machine and get a mask that will work for you. However, you do need the "This will work for me" attitude. There is no simple fix and the mask will be the biggest stumbling block, but hopefully we can get you sorted with something that will work a lot better for you.
The good thing is you have the best machine to try sort it out with.
Have you got a manual for your machine?
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Permalink Reply by thatbloke on
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Hi, thanks for your reply.
I'm located in the Portsmouth area.
In response to your questions:
Type of machine - Resmad Autosense
Humidifier - none
Mask type - Full face
Model of mask - Resmed airfit F20 medium
Full faced - yes
Nasal - see above
Nasal Pillows - no idea what this is
In addition I breathe through my mouth - typcally cannot breathe through my nose due to one of my nostrils always closing up and then me being literally unable to take in enough air through my nose as a result.
I am also categorically a side sleeper.
My post is long and contains a bunch of rambling but what it boils down to is me questioning whether a different type of mask might work better for me. I was looking at one of those that go under the chin, the one that has the hose come in at the top, or alternately even that whole face one that even goes over the eyes.
I'm worried that I'd spend a bunch of money for no benefit... especially as I have this cpap machine as a trial atm and I just cannot use it at all
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Yeah, ok, I did get your cry for help.
I see you have no humidifier, I would strongly suggest you get one, most people I know can't get past 2 to 4 hours without one.
They feel all dry in the airways and feel they can't breath. If you feel like this after some time using your machine, this may be part of your problem. If it is an NHS machine you have contact your hospital Sleep Clinic and ask for one, tell them you can't use your machine you feel so dry.
As for your mask there is a correct and a wrong way to fit them, If you are a mouth breather it lessens your options a bit.
Here are two videos as I don't know which version of the mask you have, i.e. Airfit or AirTouch.
https://www.youtube.com/watch?v=AY61YxgFwWE
https://www.youtube.com/watch?v=HJMicqbOdtU
I hope this helps a bit.
If you are going to a private clinic it can end up in a lot of money spent on masks.
One that goes under the chin might help, however, it is more important for you to get the correct size fitting mask.
If you keep opening your mouth, your mouth will drop below the bottom of the mask, if you get one that goes below the chin and you still open your mouth, you will pull the mask down your nose and either wake you with air going everywhere or air going direct into your eyes! This may be a bit strange sounding to you, but if you take one of those bandages that stretch and put it over the top of your head and under your chin (yes I know you have a full faced mask, but stay with me) and over your head and tight enough so as you can't open your mouth easily (but still can) this might hold your mask in place for a night. Just give it a try. Now, you may have to put it over the straps of the mask, but don't worry, you can still get the mask off in a hurry by using the straps on the mask.
Next question. Do you feel you are getting enough air? If not you will need to increase the air (LOW) pressure.
I hope they didn't give you a machine set at 4 to 20, if they did it is no wonder you are struggling.
I will have to go back over your first post again!
I will read it and come back to you in another post.
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"I tried using the machine every night, as instructed, but typically after 1-2 hours of having the mask on I'd have to take it off and then sleep without it as I previously did. This went on for about 3 weeks before I just stopped using it. Literally could not fall asleep with it on."
Now why is this?
Is it because of leaks?
Lack of air?
Dryness?
Just can't sleep with it on? This is very common at the start.
"About 3 years ago I met a woman who now would be my wife if we didn't have to postpone it, and she confirmed that I have a major snoring problem (I knew this already) and that frequently I could stop breathing entirely at points while sleeping."
I can tell you one thing for sure. If she loves you she will not mind the APAP machine, especially the quiet machine of today!
When I met the wife the machine I had was loud enough to keep you awake on its own! However, she slept with it rumbling away all night. Then when I got a machine like yours she though it was so quiet it was not working. She would nudge me during the night to check it was running and I was still alive, but I was sound asleep.
I had huge problems at the start as well, the best thing I did was get a humidifier (the NHS had to see you couldn't use the machine before they would give you one back then) it made using the machine a lot easier.
The biggest battle I had by far was getting the right mask, I know they are very expensive for what they are. At one time you could go try a few and take the one you thought was best home, but since Covid I suspect they will not let you try any, just hold one against your face and say "I think this is the mask you need!" That does not work, but it make thing difficult.
Now I don't know yet if it is a private clinic or NHS yet, but there is a wide selection of masks out there, even cloth ones that are a bit softer, but can be a bit problematic for some, other find they are very good. I have not used one.
By the way, I used to be a mouth breather, I had to train myself to nose breath, I had a Nasal then a Full-faced mask, nothing but trouble. So I got Nasal Pillows, they go onto your nostrils and are held there and I got a Chin strap, well I had to make a stronger one as I could open my mouth without any effort. I also had problems with one side or the other blocking after a few minutes, but I got the pressure increased and now it does not block up. However, I know you have to use a Full-faced mask, so it is a question of (Is it the correct size or mask for the shape of your face)?
I don't know the answer to that, but you shouldn't have to tighten the straps so as they hurt, if you are the mask is wrong is some way.
If you want to look at what advice a Sleep Tech gives (He is a professional in America) gives on masks types and general advice have a look through some of his videos. He has a forum as well and does answer some questions, anyway, his videos are here https://www.youtube.com/user/TheLankyLefty27/videos and looking through these might help you a bit, though there is a lot of them to look through and if you are tired this might be difficult. I remember just how tired I got in the end before I found something that worked for me.
Gone back to look at your first post again!
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I lost my last post, but there are many types of mask.
Cloth full-faced -
Changing settings - https://www.youtube.com/watch?v=vHkJuuZuhfc (Now I have to say you should not change your settings, but my mate got a new machine like this and the nurse told him she could NOT set it due to Covid and he would have to do it himself!! He phoned me to ask how to set it up!!! WHAT! Ridicules!!
F30 Resmed - https://www.youtube.com/watch?v=WTBsvlQG5Og
Hybrid Mask (covers your mouth and has nasal pillows goes into your nose) others are available.
Cloth full-faced mask - These can be difficult to get used to, but some love them. I don't think you will get them off NHS, though I know of someone that did.
This is just to make you aware that there is other options for you..
If you need other advice PM me.
Sorry, but i have to go, I have a lot to say to help you but I have to go for now. Sorry!
I will be back if you need me.
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While having the mask on, I don't ever feel like when I'm breathing in, that I'm actually taking in enough air. It feels like the mask pushes my lower jaw and my lips into a certain position that then prevents my normal breathing from being able to pull in enough air, either because it pushes my lower jaw back or because it feels like I have to push my lips out into a sort of pouting face so that I can actually breathe - I think your pressure is set to LOW on minimum pressure! Got to go for now.
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Additionally, with the mask on, within literally about 5 breaths, my mouth becomes drier than the sahara desert - You NEED a HUMIDIFIER.
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Note that this feeling of not breathing properly also happens even if I put the mask on for a bit during the day, just to try to get used to it. I simply do not ever feel like I'm taking in enough air when I breathe in, and therefore have to manually take over - Pressure is low on the LOW setting. You might find it is on 4 and needs to be at lease 8 if not 10.
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With the last point in mind, because I never feel like I'm breathing "normally" with the mask on, I then end up taking over and "manually" trying to concentrate on my breathing with it on. This, of course, means that there's another reason here that I can never relax with it on - because I have to stay awake to concentrate on my breathing - Normal breathing takes a bit of getting used to, when to low it feel you are not getting enough pressure (FLOW) and when it is to high you feel it is forcing air into you and you struggle to breath out, this is where the EPR comes in, drops pressure slightly when you breath out, The lower the number you can use in this setting the better. My machine is at 1, this is because I forgot to turn it off altogether! So much for my own advice!
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This came to a head a couple of weeks back where, even while just sat in front of my computer at home, I felt like I wasn't breathing properly, even with none of this going on - I was having to manually breathe. I got tested for covid that day (it was negative) and then went to see my doctor who diagnosed me with "disordered breathing" - apparently I was trying to manually breathe, and if I ever caught myself doing so I needed to stop and try to occupy myself with something so that I could try to stop manually breathing. This has gotten better since I've had that conversation with my GP, however. - I went through a spell of that, so I wouldn't worry about it. I also went through a spell when I would just stop breathing, I don't know if it was that I was just so tired and fatigued or not, but I would suddenly realise I had stopped breathing, sometimes this would happen just as I was about to nod off. The brain would kick in and I would wake fully and breath! A lot of doctors are not fully aware of the strange thing that Sleep Apnoea affect. Handy diagnosis for him to give you, he may be right of course.
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thatbloke said:Hi, thanks for your reply.
I'm located in the Portsmouth area.
In response to your questions:
Type of machine - Resmad Autosense - GOOD machine, maybe the best.
Humidifier - none - I think you need one urgently.
Mask type - Full face - There are a lot of sizes, makes and models as above.
Model of mask - Resmed airfit F20 medium - Ok, Airfit, there are two types, I left you to watch the videos.
Full faced - yes. - There is a cloth type as mentioned, also Hybrid type, lots of models and manufacturers to choose from, but they are not cheap. This is the biggest problem area for most users and as I found out, you find one that works for you and the next thing is they don't make it anymore! The NHS will offer you the a few masks, but if you are PRIVATE buying masks is expensive. If this is the case, try getting a sizing kit from a manufacturer for a mask, not all do this but the main ones usually do. You may need a help form someone to size it correctly,
Nasal - see above - FULL-FACED.
Nasal Pillows - no idea what this is - Well, they go onto your nostrils and might be no use to you.
In addition I breathe through my mouth - typically cannot breathe through my nose due to one of my nostrils always closing up and then me being literally unable to take in enough air through my nose as a result. - I used to have this problem, but not now that I used a machine at a higher pressure for a long time.
I am also categorically a side sleeper. - This is best for OSA (Obstructive Sleep Apnoea).
My post is long and contains a bunch of rambling but what it boils down to is me questioning whether a different type of mask might work better for me. I was looking at one of those that go under the chin, the one that has the hose come in at the top, or alternately even that whole face one that even goes over the eyes.- This might brag down the mask on your nose and cause it to leak into your eyes, if you open your mouth, it will pull down the mask.
You can get a Chin Strap, or maybe better for you, a Collar to hold your mouth from opening.
I'm worried that I'd spend a bunch of money for no benefit... especially as I have this cpap machine as a trial atm and I just cannot use it at all - You are calling it a CPAP machine, but it is an APAP (Automatic positive airways pressure). Not that I am picking you up on it, it is just if asking for advice it is best to say it is automatic pressure.
If you need more help, PM me.
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