In the UK...Pod153’s Big Mild OSA/UARS Adventure - ready to give up

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Pod153
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Re: Pod153’s Big Mild OSA/UARS Adventure

Post by Pod153 » Tue Dec 06, 2022 10:19 pm

Update - I’ve been trying a full face mask, the Dreamwear one. My nose still blocks up completely after an hour of use. I guess with the full face mask I’m still receiving pressure through my mouth when that happens but I also feel like it’s leaking a ton, I seem to have to basically clamp the thing to my face super tight to prevent it, and seem to need to clench my jaw to maintain a seal, which is very uncomfortable.

For some reason the MyAir app has also recorded 25 events per hour while I’ve been awake with it on, which given my baseline was 5.4 I suspect is - bluntly - garbage. However my heart rate has gone back to bouncing around all over the place during use so I think it actually isn’t controlling events as well as the pillows mask was.

None of this matters really. Aside from the one acceptable night I described in this thread I have slept for around an hour a night since receiving the machine and am now also increasingly unable to breathe nasally during the day. I have never experienced insomnia like this. I’m not panicking or feeling anxious about it, my body simply won’t stay asleep while wearing it. After an hour my nose blocks and I wake up and that’s that.

The lack of sleep is destroying my life. I can’t work and have had to abandon a freelance contract and go on hiatus from a volunteer role I loved. I am starting to have minor hallucinations, just shapes moving in my field of vision. My nose is extremely inflamed now and steroid spray doesn’t seem to control it so I’m also in pain all the time, and I can’t really smell or taste so I don’t want to eat. I can write still but I can barely string words together in conversation. I feel too ill to exercise. I have started to have very very bad thoughts and feel like I’m going to kill myself if I don’t get some sleep soon.

I have an appointment with a sleep dentist today to get a mandibular advancement device made. It may well be possible for me to eventually get results with CPAP but I am still averaging one hour of sleep a night after almost a week with no sign of improvement and in the meantime life doesn’t stop. I work, I study, I have responsibilities, and this feels like it’s doing more damage to my health and my life than an AHI of 5.4 ever could. Persisting is beginning to feel like it would be a form of self-harm.

My real issue was always arousals - and my arousals are vastly, vastly worse now. I essentially can’t sleep at all. I can’t do this any more and am going to try a MAD instead.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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ozij
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Re: Pod153’s Big Mild OSA/UARS Adventure

Post by ozij » Tue Dec 06, 2022 10:29 pm

I was wondering about you.
I hope you will find a good solution to your problem - wish things went better for you with the CPAP.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: Machine: AirSense??? 10 AutoSet??? For Her CPAP Machine with HumidAir??? Heated HumidifierSoftware: Oscar; alternating masks
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.

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Pod153
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Re: Pod153’s Big Mild OSA/UARS Adventure

Post by Pod153 » Tue Dec 06, 2022 10:50 pm

ozij wrote:
Tue Dec 06, 2022 10:29 pm
I was wondering about you.
I hope you will find a good solution to your problem - wish things went better for you with the CPAP.
Thank you. Honestly I’ve been too tired to post. I pretty much just sit at my desk and cry. I can’t do much else.

how do you keep a full face mask sealed?
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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ozij
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Re: Pod153’s Big Mild OSA/UARS Adventure

Post by ozij » Tue Dec 06, 2022 11:01 pm

Pod153 wrote:
Tue Dec 06, 2022 10:37 pm
how do you keep a full face mask sealed?
Some general rules/advice. Not sure you personally can use them now - you sound like you need a break from CPAP.

Not comparing - but back when I started therapy, after the first few nights my nostrils were badly irritated from the mere touch of the pillows. I was instructed to take a 3 night break to let that area heal - I did that and have been using my CPAP nightly in the 17 years since.

I'm glad you asked about sealing the FFM.
Here goes:
You look for the mask fitting instruction on YouTube - the ones from the company first.
You do the fitting lying down - not sitting - despite what YouTube shows you -- but you follow the order they suggest.
You do it when you're relatively awake and relaxed, not when all you want is to fall asleep.
I know that ResMed for one also has trouble-shooting instructions that show you which strap affects which type of leak.
You run the "mask fit" option in your machine -- this will blow at the highest pressure and you try to seal for that pressure. (I hope your highest isn't 20....)
You don't do any of the following
Pod153 wrote:
Tue Dec 06, 2022 10:19 pm
I seem to have to basically clamp the thing to my face super tight to prevent it, and seem to need to clench my jaw to maintain a seal, which is very uncomfortable.
You try to let the mask fill itself, and maintain the seal through the ballooning effect on the silicon.
You check what happens when you turn to side (assuming you're a side sleeper at least part of the time).
You may find out you need a different pillow that will make it easier to keep the seal.
And then:
Sometimes an FFM made by another company, and /or a different sized one may seal much better on your face.

It's a hassle. Not intuitive. But sometimes, totally worth that trial and error once you've found the mask and pillow that let you sleep.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: Machine: AirSense??? 10 AutoSet??? For Her CPAP Machine with HumidAir??? Heated HumidifierSoftware: Oscar; alternating masks
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.

Antoine de Saint-Exupery

Pod153
Posts: 38
Joined: Tue Nov 01, 2022 9:06 am

Re: Pod153’s Big Mild OSA/UARS Adventure

Post by Pod153 » Tue Dec 06, 2022 11:19 pm

ozij wrote:
Tue Dec 06, 2022 11:01 pm
Pod153 wrote:
Tue Dec 06, 2022 10:37 pm
how do you keep a full face mask sealed?
Some general rules/advice. Not sure you personally can use them now - you sound like you need a break from CPAP.

Not comparing - but back when I started therapy, after the first few nights my nostrils were badly irritated from the mere touch of the pillows. I was instructed to take a 3 night break to let that area heal - I did that and have been using my CPAP nightly in the 17 years since.

I'm glad you asked about sealing the FFM.
Here goes:
You look for the mask fitting instruction on YouTube - the ones from the company first.
You do the fitting lying down - not sitting - despite what YouTube shows you -- but you follow the order they suggest.
You do it when you're relatively awake and relaxed, not when all you want is to fall asleep.
I know that ResMed for one also has trouble-shooting instructions that show you which strap affects which type of leak.
You run the "mask fit" option in your machine -- this will blow at the highest pressure and you try to seal for that pressure. (I hope your highest isn't 20....)
You don't do any of the following
Pod153 wrote:
Tue Dec 06, 2022 10:19 pm
I seem to have to basically clamp the thing to my face super tight to prevent it, and seem to need to clench my jaw to maintain a seal, which is very uncomfortable.
You try to let the mask fill itself, and maintain the seal through the ballooning effect on the silicon.
You check what happens when you turn to side (assuming you're a side sleeper at least part of the time).
You may find out you need a different pillow that will make it easier to keep the seal.
And then:
Sometimes an FFM made by another company, and /or a different sized one may seal much better on your face.

It's a hassle. Not intuitive. But sometimes, totally worth that trial and error once you've found the mask and pillow that let you sleep.
Thank you so much. I kind of did do this to start with. But at a pressure of 4.0 it feels like the mask doesn’t really fill. It seems to pass the fit test at higher pressures but at the lowest pressure it doesn’t seal.

I have a fit pack with 4 different sizes and an additional frame and have tried them all. I can get a seal with one combination only but have to clamp it to my face, as above.

I had terrible problems with nasal congestion even before CPAP to the extent that surgery was discussed, but it was under good enough control with fluticasone that we thought it would be okay. I got in touch with my consultant yesterday to discuss the situation and he now thinks I may need turbinate coblation after all. But the wait for that is months and months, maybe longer. So I don’t know if even taking a break would help. Did your nasal irritation not come back after you took the 3 day break?

All I want all the time is to fall asleep. Maybe that’s why I can’t figure out how to fit it.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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ozij
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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by ozij » Tue Dec 06, 2022 11:39 pm

I said "not comparing" because the type of irritation I refer to in those sentences was not inside my nose, affecting my breathing, but in (on?) the skin of my nostrils / nose.

The stuffiness I got from having air blowing in is something else.
My solution(s) is:
Finding the right - in my case lower than "Auto" temp
Finding the right amount of humidity - almost as bad as Goldilocks :wink: not too little and not too much.
There were times I did better with an FFM, times I could (can) tolerate nasal pillows.
And nasal rinses are helpful too.

The basic state of my nose was / is no way as bad as yours.

Check this, for discussion with your specialist:
Baby shampoo nasal irrigations for the symptomatic post-functional endoscopic sinus surgery patient

https://pubmed.ncbi.nlm.nih.gov/18284857/
^^^^^Not something I've tried.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: Machine: AirSense??? 10 AutoSet??? For Her CPAP Machine with HumidAir??? Heated HumidifierSoftware: Oscar; alternating masks
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.

Antoine de Saint-Exupery

joepublic23
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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by joepublic23 » Wed Dec 07, 2022 4:28 pm

I tried CPAP for 3 months. I managed to fall asleep a total of 4 times during this period, and I was drugged for each of those. The last time I tried to use the CPAP I took Ambien and still couldn’t fall asleep so I returned it. Like you my AHI is fairly low so the health risk of doing nothing for me is pretty low. I am only doing this for my wife so she won’t be kept up by my snoring. I only agreed to try after I learned about the Inspire Implant- I can’t fall asleep wearing a watch or my wedding ring and I have struggled with insomnia my whole life so I knew CPAP was destined to fail. That said- my AHI is too low for Inspire.

I just got fitted for a mandible advancement device last weekend. We will find out if I can use it or not. Best of luck!

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robysue1
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Re: Pod153’s Big Mild OSA/UARS Adventure

Post by robysue1 » Wed Dec 07, 2022 10:47 pm

Pod153 wrote:
Tue Dec 06, 2022 11:19 pm
Thank you so much. I kind of did do this to start with. But at a pressure of 4.0 it feels like the mask doesn’t really fill. It seems to pass the fit test at higher pressures but at the lowest pressure it doesn’t seal.
Are you using the ramp? And do you need to start at 4cm?

If you are using the ramp and you can comfortably get to sleep at your min pressure setting, then turning the ramp off might help you get the mask to seal better at the beginning of the night.

If your min pressure is set to 4cm, you might do better starting at a pressure that is closer to your median pressure for the night.

And finally, since you are having trouble getting the mask to seal at low pressures, here's one idea for you to try: Gently pull the mask just a tiny bit away from your face and hold it there for a few seconds so that the cushion can inflate. Let go of the mask and allow it to resettle on your face all by itself. The cushion should stay inflated, but it should also mold to your face enough to seal it.
I have a fit pack with 4 different sizes and an additional frame and have tried them all. I can get a seal with one combination only but have to clamp it to my face, as above.
Are you clamping it down when trying to seal the mask at full pressure when you are running the mask check? Or are you clamping it down at the beginning of the night when the pressure is only 4cm?

If you are clamping it down when running the mask check, you may be preventing the cushion from being able to fully inflate. Loosen the straps some (while the machine is on and at full pressure) and pull the mask just a bit away from your face---i.e. intentionally create a rather large leak. Allow the air to fully inflate the cushion and then let go of the mask. The mask should resettle on your face with a pretty good seal.

If you wake up in the middle of the night with a leak, you can try fixing the leak in the same way: Pull the mask slightly away from your face and allow the cushion to fully inflate. Then let go of the mask and let it resettle on your face by itself. That should allow the mask to reseal itself.

All I want all the time is to fall asleep. Maybe that’s why I can’t figure out how to fit it.
It sounds like you're developing some anxiety about your inability to fall asleep and stay asleep. That can make it a whole lot harder to get to sleep with the mask on your face.

I'll offer this one piece of unsolicited advice: If you are fighting with the machine for what feels like more than 20 or 30 minutes trying desperately to get to sleep, it may be worthwhile to just get out of bed, go into a different room and sit quietly in the dark until you relax a bit and start feeling sleepy instead of just tired and exhausted and frustrated. Then go back and try to get to sleep with the mask again.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Also use a P10 mask
Joined as robysue on 9/18/10. Forgot my password & the email I used was on a machine that has long since died & gone to computer heaven.

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robysue1
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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by robysue1 » Wed Dec 07, 2022 10:59 pm

joepublic23 wrote:
Wed Dec 07, 2022 4:28 pm
I can’t fall asleep wearing a watch or my wedding ring and I have struggled with insomnia my whole life so I knew CPAP was destined to fail. That said- my AHI is too low for Inspire.

I just got fitted for a mandible advancement device last weekend. We will find out if I can use it or not. Best of luck!
I won't be at all surprised if you find the mandible advancement device about as hard to sleep with as the CPAP since you can't get to sleep while wearing a watch or a wedding ring.

I think regardless of what you eventually do to try to take care of your mild OSA and snoring, you won't really be completely successful until you figure out a way to fix you insomnia.

In other words, if you can teach your body to fully associate being in bed with being asleep, you might find it much easier to tolerate a watch, a wedding ring, a mandible advancement device, and/or a CPAP mask while you are sleeping.

But teaching your body to fully associate being in bed with being asleep can involve some hard work. Have you ever considered doing some cognitive behavior therapy for insomnia? The point of CBT-I is to teach your body to associate being in bed with being asleep so that when you do go to bed, your body naturally goes to sleep rather quickly instead of fighting to get to sleep. Other parts of CBT-I help teach your mind and body how to not over-react to waking up in the middle of the night so that you can quickly fall back asleep instead of lying in bed wondering why you are awake and how long it will be before you get back to sleep.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Also use a P10 mask
Joined as robysue on 9/18/10. Forgot my password & the email I used was on a machine that has long since died & gone to computer heaven.

Correct number of posts is 7250 as robysue + what I have as robysue1

Profile pic: Frozen Niagara Falls

joepublic23
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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by joepublic23 » Thu Dec 08, 2022 10:55 am

I struggled with difficulty falling asleep for most of my life. I successfully used some sleep hygiene techniques to largely tame (but not eliminate) the insomnia monster. To tame the beast I needed a certain amount of rigidity in my night time schedule. Things like no caffeine after 2:00pm, so office work after 8:30pm, etc. Unfortunately part of my bedtime ritual requires that I remove said ring and watch and that I must fall sleep on my back. Any deviation from this results in my tossing and turning and staying awake, until I comply. Failure to comply brings back the insomnia.

Fortunately the MAD does not have the insurance compliance requirement that CPAP does, so I can make a more gradual start. I will spend the first several weeks or even months after I get the device wearing it while working and or watching TV until I don’t think about 100% of the time. I did not do that with the CPAP.

Once I am able to wear it for hours on end without noticing it too much, then and only then will I make any attempt to sleep with it.

When I finally do try I will wait until a weekend night as I am less likely to experience insomnia on the weekend since I know I can sleep in the next morning, if necessary. I am trying to decide if I will limit attempts to weekend nights only initially. What do you think? Am I more likely to have success training myself to sleep with something in my mouth on Friday’s and Saturdays only (at first) or does just reinforce that I am unable to sleep with something in my mouth?

I will also go straight to taking Ambien for my first attempt to hopefully avoid getting stuck in a rut where I expect insomnia. I took Benadryl for my first attempt at CPAP (I did manage to fall asleep once with CPAP on Benadryl, whereas I fell with CPAP 3 out of the 4 times I took Ambien. (The 4th time I took Ambien I still could not fall asleep with the CPAP, that was the last time I attempted to use it.) The Ambien issue also makes me think that (initially) limiting my attempts to use the MAD on the weekend might be the best option as I don’t want to become addicted to it, or develop a tolerance so I think limiting Ambien to Friday and Saturday with the MAD might be the best choice.

Any other suggestions would be greatly appreciated.

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Pod153
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Re: Pod153’s Big Mild OSA/UARS Adventure

Post by Pod153 » Sun Dec 11, 2022 10:18 am

robysue1 wrote:
Wed Dec 07, 2022 10:47 pm
Are you using the ramp? And do you need to start at 4cm?

If you are using the ramp and you can comfortably get to sleep at your min pressure setting, then turning the ramp off might help you get the mask to seal better at the beginning of the night.

If your min pressure is set to 4cm, you might do better starting at a pressure that is closer to your median pressure for the night.

And finally, since you are having trouble getting the mask to seal at low pressures, here's one idea for you to try: Gently pull the mask just a tiny bit away from your face and hold it there for a few seconds so that the cushion can inflate. Let go of the mask and allow it to resettle on your face all by itself. The cushion should stay inflated, but it should also mold to your face enough to seal it.

Are you clamping it down when trying to seal the mask at full pressure when you are running the mask check? Or are you clamping it down at the beginning of the night when the pressure is only 4cm?

If you are clamping it down when running the mask check, you may be preventing the cushion from being able to fully inflate. Loosen the straps some (while the machine is on and at full pressure) and pull the mask just a bit away from your face---i.e. intentionally create a rather large leak. Allow the air to fully inflate the cushion and then let go of the mask. The mask should resettle on your face with a pretty good seal.

If you wake up in the middle of the night with a leak, you can try fixing the leak in the same way: Pull the mask slightly away from your face and allow the cushion to fully inflate. Then let go of the mask and let it resettle on your face by itself. That should allow the mask to reseal itself.

It sounds like you're developing some anxiety about your inability to fall asleep and stay asleep. That can make it a whole lot harder to get to sleep with the mask on your face.

I'll offer this one piece of unsolicited advice: If you are fighting with the machine for what feels like more than 20 or 30 minutes trying desperately to get to sleep, it may be worthwhile to just get out of bed, go into a different room and sit quietly in the dark until you relax a bit and start feeling sleepy instead of just tired and exhausted and frustrated. Then go back and try to get to sleep with the mask again.
I turned the ramp off on day 1 because it was driving me absolutely nuts. My minimum pressure is set to 4.0 at the moment - during my last follow-up call I told the technician I wanted to increase it and was politely told 'we can't stop you, but we really would rather you please don't do that yet' so I didn't. I don't really know what to set it to - I think I need to get the SD card out and look at the data in OSCAR maybe, i'm not sure how else to find out my median pressure, but i'm honestly so tired at this point I can barely dress myself, so the prospect of learning a new piece of software feels insurmountable.

I tend to run the fit check with the straps fairly loose and then tighten them when the mask inevitably leaks at the beginning of the night. I honestly think the mask cushion itself might be the wrong size since I've noticed if I open my mouth I also get leaks. It sort of seems to hold my mouth shut. Which means I've got a similar problem to the one I had with the nasal pillows, where the airflow from the mask blocks my nose (though it takes longer to block up with the full face than with the pillows) and then I end up fighting to breathe after an hour or so. I had hoped if this happened with the FFM I could just breathe through my mouth, but if I open my mouth to breathe the seal breaks.

So I guess i need to try and re-fit it again, but again I am so extremely sleep deprived this feels impossible right now. my brain doesn't work right any more.

I can get to sleep with it on my face on my first attempt each night. That works okay. i wake up after somewhere between 30 minutes and 2 hours either with my mouth open causing a leak, or unable to breathe through my nose with the mask holding my mouth shut and feeling like i'm suffocating. Then i can't get back to sleep. and that's all the sleep i get each night now.

It takes the whole of the next day for my nose to unblock enough to be able to sleep without snorting myself awake again. I think it is an anxiety issue in as much as it's anxiety caused by being physically unable to breathe. I also can't fall asleep even after taking the mask off after I wake up, because i can't breathe properly once my nose has blocked up. I'm being seen on the 20th i think to see if i need turbinate surgery after all. I can't see how this is normal.

To add insult to injury, according to MyAir it's barely lowering my AHI. I have no idea if it's reducing my flow limitations (which were always the main issue) though.

I got assessed for a MAD this week but my teeth are so crooked the only ones I am eligible for are insanely expensive custom ones.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Re: Pod153’s Big Mild OSA/UARS Adventure

Post by robysue1 » Sun Dec 11, 2022 11:20 am

Pod153 wrote:
Sun Dec 11, 2022 10:18 am
I turned the ramp off on day 1 because it was driving me absolutely nuts. My minimum pressure is set to 4.0 at the moment - during my last follow-up call I told the technician I wanted to increase it and was politely told 'we can't stop you, but we really would rather you please don't do that yet' so I didn't.

I don't really know what to set it to - I think I need to get the SD card out and look at the data in OSCAR maybe, i'm not sure how else to find out my median pressure, but i'm honestly so tired at this point I can barely dress myself, so the prospect of learning a new piece of software feels insurmountable.
If your min pressure = 4, the ramp wasn't really doing anything anyway.

And keep in mind the DME/doctor's office folks are not the ones trying to sleep with this machine---you are.

If you are not comfortable at 4cm, you need to bump the min pressure up to where you are comfortable.

Unless the DME set your machine up so that the LCD hides the full sleep report from you, you can get the 95% pressure level directly off the machine's LCD. You can use that number as a guideline for where to set the min pressure: Try setting your min pressure 2 or 3 cm below the 95% pressure level reported on the machine's LCD.

If you don't know how to get into the clinical settings to make sure you can get all the data available on the machine's LCD, let us know and we'll be happy to get you the information you need.

If you don't want to deal with OSCAR yet, consider creating a free account at SleepHQ and uploading your data there: There's no software to install on your computer that way. You can copy the link to your daily data into a post here, and then the folks like me, palerider, pugsy, and so on, can look at it in order to help you learn to help yourself.
I tend to run the fit check with the straps fairly loose and then tighten them when the mask inevitably leaks at the beginning of the night. I honestly think the mask cushion itself might be the wrong size since I've noticed if I open my mouth I also get leaks. It sort of seems to hold my mouth shut. Which means I've got a similar problem to the one I had with the nasal pillows, where the airflow from the mask blocks my nose (though it takes longer to block up with the full face than with the pillows) and then I end up fighting to breathe after an hour or so. I had hoped if this happened with the FFM I could just breathe through my mouth, but if I open my mouth to breathe the seal breaks.
Consider fitting the FFM with your mouth open. And be sure you are lying down in your normal sleep position when fitting the mask.
So I guess i need to try and re-fit it again, but again I am so extremely sleep deprived this feels impossible right now. my brain doesn't work right any more.
The problem is that every time you tighten the straps trying to get the mask to seal better, you are working at cross purposes for properly fitting the mask.

Try fitting the mask well before bedtime and then try to resist tightening the straps during the night. If/when you wake up to a leak, rather than tightening the straps, try this: Gently pull the cushion just a little bit away from your face---be prepared for a huge gust of air because you're triggering a big unintentional leak. Hold the mask cushion away from your face for a second or two so that the cushion can full inflate. Then let go of the mask and allow it to settle back on your face all by itself. That will usually fix most leaks in the middle of the night.
I can get to sleep with it on my face on my first attempt each night. That works okay. i wake up after somewhere between 30 minutes and 2 hours either with my mouth open causing a leak, or unable to breathe through my nose with the mask holding my mouth shut and feeling like i'm suffocating.
Since you are using a FFM, fit the mask with your mouth open. That may help reduce the feeling that the mask is somehow holding your mouth shut.

Also even though you are very tired and sleep deprived, try to sort out why it feels like the mask is holding your mouth shut: Most people have the opposite problem---they can't keep their mouth shut. And that causes it's own set of problems. But it sounds to me like you'd be better off letting your mouth open, so you need to figure out why it feels like the mask is holding your mouth shut.

Then i can't get back to sleep. and that's all the sleep i get each night now.
Been there, done that, and have the scars to prove it.

In all seriousness, the not being able to get back to sleep because of significant, overwhelming comfort-related issues is a major problem for some of us. All I can tell you is that it is worth getting out of bed and going into another room so that you can settle yourself down and work on getting the nose to settle down or at least get more comfortable breathing through your mouth before returning to bed and trying again.
It takes the whole of the next day for my nose to unblock enough to be able to sleep without snorting myself awake again. I think it is an anxiety issue in as much as it's anxiety caused by being physically unable to breathe. I also can't fall asleep even after taking the mask off after I wake up, because i can't breathe properly once my nose has blocked up. I'm being seen on the 20th i think to see if i need turbinate surgery after all. I can't see how this is normal.
I think you've nailed a significant part of your problem: Anxiety. Have you talked with your sleep doc about this issue? And would you consider taking an anti-anxiety medication as needed for a while?
To add insult to injury, according to MyAir it's barely lowering my AHI. I have no idea if it's reducing my flow limitations (which were always the main issue) though.
Much as you don't want to hear it, in order to answer your questions about why your AHI is not much lower and whether the machine is reducing the flow limitations requires looking at the detailed daily data in either Oscar or SleepHQ.
I got assessed for a MAD this week but my teeth are so crooked the only ones I am eligible for are insanely expensive custom ones.
As someone who has chewed through multiple expensive TMJ guards through the last 40 years, I understand what you mean. It took working with a TMJ specialist who liked challenges to finally craft a night guard that cost about $2000 before I stopped chewing through them in the course of 12-18 months. (I was referred to the TMJ specialist by my primary care dentist when I chewed through a custom made guard that cost about $300 buck in 3 months during my first year of PAPing.)

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Pod153
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Re: Pod153’s Big Mild OSA/UARS Adventure

Post by Pod153 » Sun Dec 11, 2022 1:05 pm

robysue1 wrote:
Sun Dec 11, 2022 11:20 am
Unless the DME set your machine up so that the LCD hides the full sleep report from you, you can get the 95% pressure level directly off the machine's LCD. You can use that number as a guideline for where to set the min pressure: Try setting your min pressure 2 or 3 cm below the 95% pressure level reported on the machine's LCD.

If you don't know how to get into the clinical settings to make sure you can get all the data available on the machine's LCD, let us know and we'll be happy to get you the information you need.

If you don't want to deal with OSCAR yet, consider creating a free account at SleepHQ and uploading your data there: There's no software to install on your computer that way. You can copy the link to your daily data into a post here, and then the folks like me, palerider, pugsy, and so on, can look at it in order to help you learn to help yourself.
I don't know what the DME is but I don't think it applies in my case (and maybe it doesn't apply in the UK at all). I just didn't realise the clinical menu also had a more detailed sleep report! I've just looked at it and it has my 95% pressure as 8.6, so my intuitive hunch that my minimum pressure should be about 6.0 might be correct.

Slightly alarmingly it also shows that half my arousals are now centrals, which is concerning when I've done a boatload of sleep studies and never had a single central. Hopefully these are just it not knowing when I'm awake - I notice it often ramps the pressure really high when I'm still fully awake so maybe it's just that. The ramp was routinely going up to 10 or 11 before I'd even fallen asleep which was the reason I disabled it - if that's the pressure it thinks I need, I'd rather just get used to that rather than the excruciatingly slow creep up towards it.

I didn't know about SleepHQ, so thank you so much for the tip-off there as well. I'll upload my data there and try to at least figure that out. I think unfortunately I only have a few hours of data to go on from actual sleep since I almost never sleep longer than an hour with the mask on and sometimes much less, but I assume collected all together it'll be enough.

(I am normally a huge data-head, it's one of the reasons I wanted to try CPAP before considering an MAD, but I hadn't anticipated how much getting essentially no sleep at all would change me :()
Try fitting the mask well before bedtime and then try to resist tightening the straps during the night. If/when you wake up to a leak, rather than tightening the straps, try this: Gently pull the cushion just a little bit away from your face---be prepared for a huge gust of air because you're triggering a big unintentional leak. Hold the mask cushion away from your face for a second or two so that the cushion can full inflate. Then let go of the mask and allow it to settle back on your face all by itself. That will usually fix most leaks in the middle of the night.

Since you are using a FFM, fit the mask with your mouth open. That may help reduce the feeling that the mask is somehow holding your mouth shut.

Also even though you are very tired and sleep deprived, try to sort out why it feels like the mask is holding your mouth shut: Most people have the opposite problem---they can't keep their mouth shut. And that causes it's own set of problems. But it sounds to me like you'd be better off letting your mouth open, so you need to figure out why it feels like the mask is holding your mouth shut.
Thank you for this. I just checked, and it won't rest flush against my face when my mouth is open so I simply can't fit it like that. I guess that's the problem. The mask feels like it's holding my mouth shut because, when it's actually sealed, the edges of the cushion are kind of compressing the skin above and below my lips. My lips are sort of mushed against the cushion edges so I can't open them -- it places quite a lot of pressure on my upper and lower gums. I thought this was supposed to be the case (it's really hard to see in the product photos) but from this description I suspect it's not, and maybe it's too small for me even though it's the right size for my nose. If I open my mouth or even my lips at all it just pushes the cushion away, and pushes the mask off my face.

I also don't know if maybe the issue isn't the mask itself but the frame holding it in the wrong place. The 'how to tell if your mask frame fits wrongly' images make sense in theory but when I look at myself in profile both sizes of frame look okay. But maybe I need to try the standard frame again.
I think you've nailed a significant part of your problem: Anxiety. Have you talked with your sleep doc about this issue? And would you consider taking an anti-anxiety medication as needed for a while?
To be honest, I used the word 'anxiety' because you did - I'm not sure it's really accurate to call it anxiety when I'm waking up with a blocked up nose and a mask that holds my mouth shut!

I imagine that a sedating anxiety medication might help me wake up less, but we don't use PRN anti-anxiety medication in the UK pretty much at all so unfortunately it's kind of moot. Benzodiazepines and z-drugs are licensed here, but in practise are virtually inaccessible (at least if you are my age - as a society we seem collectively terrified of addiction in younger adults, for better or for worse). The only anti-anxiety medications I've ever, ever been offered are SSRIs (which I trialled a bunch of when my sleep fragmentation was first discovered years ago on a study that didn't look at RDI or flow limitation, but they made me feel far worse and I wouldn't take them again), or beta blockers (and I'm already on a beta blocker for POTS).

In either case, I really feel I'm waking up for a physiological reason - to put it into perspective, on the one night I used an oxymetazoline spray I slept for seven hours without issue, but the only communication I have actually had from my sleep specialist was to say that he absolutely will not do turbinate surgery on me if I've been using oxymet for more than three days consecutively without a week's break in between, so I cannot use that long-term. Given that's the only thing that's helped, I don't think the sensation of being unable to breathe is primarily psychological. So I would be very reluctant to take anything that prevents me waking myself if I can't breathe, anyway.

I'll try on all the different sizes of cushion again. This discussion has confirmed that the mask I've been using absolutely doesn't fit me at all which is very useful to know.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.

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Pugsy
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Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pugsy » Sun Dec 11, 2022 1:26 pm

Pod153 wrote:
Sun Dec 11, 2022 1:05 pm
Slightly alarmingly it also shows that half my arousals are now centrals,
If you are seeing a lot of arousal breathing with a lot of centrals flagged then those centrals are a symptom of the multiple arousals and not real asleep centrals. You have to be asleep for a central to matter when flagged. Awake/arousal centrals don't mean anything except poor sleep quality.

The machine only measures air flow. It has no way to measure anything else much less if we are asleep or not.
It can and will flag awake/arousal breathing irregularities as some sort of apnea event and it's common to see arousal centrals during arousal breathing.

What is more worrisome is that your sleep quality has deteriorated and now you are spending a lot of time awake or semi awake with the machine on.

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Pod153
Posts: 38
Joined: Tue Nov 01, 2022 9:06 am

Re: Pod153’s Big Mild OSA/UARS Adventure - ready to give up

Post by Pod153 » Sun Dec 11, 2022 1:50 pm

OK, so I'm trying to sort out my mask fit again and I just don't know what I'm doing wrong.

I seemingly have two options using the M cushion which fits my nose properly.
  • Option 1. The mask is compressed flat against my face right above and below my lips, making it impossible to open my mouth without force. I get a good seal unless I try to flex my jaw or move my lips with real force, at which point it gets pushed off and the seal is broken. This is what I've been doing up until now but as my nose blocks up, not being able to open my mouth becomes impossible and wakes me up.

    Option 2. The mask kind of sort of seals loosely using the cushion which inflates, but as the pressure goes up it starts to whistle and a bunch of air escapes at the sides. If I open my mouth a gap is created at the bottom of the mask. I can very easily open my mouth and have my bottom lip end up below the bottom of the mask.
If I use the L cushion instead (despite it seeming kind of suspect that I, a fairly small woman with a reasonably average-sized nose, would need an L sized cushion!), I can fit it loosely as per option 2, and get a seal which will allow me to open my mouth a little without breaking it, and which I can open my mouth in without my lower lip ending up outside the cushion.

However, the opening for nasal airflow on the L isn't really lined up with my nostrils, it's too far forward. It mostly doesn't leak and seems to sort of backflow into the mask, but my sense is that I'm not really getting the intended pressure through my nose in the same way I can feel I am with the M. Maybe that doesn't matter if I'm mouth-breathing. If I touch my nose at all it leaks, but if I can avoid touching my nose I think it's the better size. It is a few millimetres taller than the M and that seems to be what makes the difference.

It seems like I need the extra height of the L mask, but the nasal sizing of the M mask. Do you think I could tape around the nose aperture of the L to improve the seal or something?

Or does this just mean I'm screwed and my face is the wrong shape for the Dreamwear full face somehow?

I also really just don't know how tight the straps should be. Are there people I can pay to sit on a video call with me and tell me how I'm supposed to be fitting this stupid thing? My sleep consultant is absolutely zero help, Resmed seem willing to do this with me only if I'm using a Resmed mask, and I'm very obviously doing something wrong but I just don't understand what. The people in the fitting videos do not seem to have the same problems as me so the videos are useless for troubleshooting. This is absolutely infuriating.
I live in the UK, so my access to various aspects of healthcare may not be quite the same as yours.