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

[SleepGeek]

In ResMed's user manual for the UK, water for the humidifier is mentioned 27 times without specifying distilled water.

And this explains why that is so.

Hi Thumper1947, Hi ozij,

When I was working full time, my job took me to six of the 50 states. Sometimes repeatedly, so that I visited CA, FL, and NY several times. The shortest trip was three weeks. The longest trip was three months. I think that counts as 'having lived and worked in America.

I was there in CA when they had that water panic in the late 80s. And I know the history of Legionnaires disease. And I never drink the iced water which they bring to the restaurant table as soon as my friends and colleagues and I sit down. But I appreciate it as a gesture. It is a form of courtesy.

And speaking of courtesy, I'm sure your intention in recommending distilled water to the UK-based Pod153 was, and is, a positive one. However ...

1. The tap water in homes throughout the UK is fit to drink. It has to be that way, by law.

There are differences up and down the country as to how 'hard' or how 'soft' – meaning the amount of calcium carbonate and magnesium carbonate which is dissolved in it. But all domestic water is safe to drink.

2. The kind of distilled water that can be bought in any supermarket in the US – Walmart, Vons, you name it – for less than a few dollars is just not available from equivalent stores in the UK. There is bottled water from this or that mountain spring, and it is safe. But it is not distilled.

3. You can buy what's labelled 'distilled water' in motoring supplies stores and in the little shops attached to gas stations. But that is not safe to drink. It is intended only for topping up car or truck batteries.

4. In the UK, the kind of distilled water that is safe to put in your mouth is (a) only available in pharmacy stores and via medical supply companies. And (b) is really, really expensive.

But as I said, British people – and visitors – can safely drink – and rinse and gargle with – the tap water.

Thanks again for your kind intention.

So if you get your cpap in the US there just may be a reason why the US Resmed manual does NOT say "Tap or Drinking Water".

So telling US users what the UK Manual says is a bit *Off-Center*.

The UK drivers manual also says to drive on the left side of the road.
Give that a go in the US. Hey I read it in the owners manual.

But hey feel free to use any water you want.
It's your therapy you can use rain water, that's been distilled by Mother Nature, right?

So telling US users what the UK Manual says is a bit *Off-Center*.

[Pod153]

It’s 4:30am. I have slept one hour with the machine before I woke up and have been trying for 2 hours to get back to sleep.

I am so exhausted I can’t stop crying.

I’ve had 2 hours of sleep total in the last 2 days. I was waking up a lot before, was having to stay in bed for 11 hours or so to get enough sleep to feel rested - but at least I was sleeping. Now I can’t fall asleep, can’t stay asleep, don’t know any more of my pressure is too high or too low, just know it feels like I can’t breathe as long as the machine is on, but the higher the pressure reading on the machine the worse it feels so I guess it’s too high.

It’s still unbearable with EPR. but it’s worse without it.

My nose seems to congest basically as soon as I start the machine no matter what I do with the humidity so I feel like I can’t get enough air in through my nose, I have to just gasp for extra room air through my mouth every now and again, but I’m so incredibly aware of the mask sitting on my face that it feels like that is also stopping me falling asleep, it keeps slipping and it’s itchy and heavy and hot and I feel like a full face mask would be worse, I found it unbearable when I was being fitted for a mask.

But two nights on CPAP has entirely reversed the effects of two months of steroid spray and now I can’t breathe through my nose again.

I appreciate the distilled water stuff, thank you all, but think I need to move the conversation on from that now if possible please. I need help. I can’t sleep any more at all it seems like. I feel like I have to persist with this because I’m so desperate to feel better but I took a sleep aid hours ago - after 1 hour of sleep the night before, I was so tired yesterday all I could do was sit and stare into space - and I’m still just lying here wide awake but exhausted feeling like I’m suffocating. Even fixed pressure feels like I’m suffocating. How can you fall asleep when you’re suffocating?

I think I have to take it off just to get some sleep. Surely it’s not supposed to be like this. I can’t bear it. I think I’d rather live the rest of my life with poor sleep than no sleep. I am desperate. I have never had insomnia in my life before but i would give anything just to be able to fall asleep. I was already sleep deprived but since starting cpap I essentially haven’t slept in two days.

Please help I don’t know what to do

[ozij]

So telling US users what the UK Manual says is a bit *Off-Center*.

Hello. I am a woman in my early 30s in the UK. I have had symptoms of sleep disordered breathing for years, did an NHS PSG several years ago which was scored using AASM 1B without RERAs, showed AHI of 0 but 60 unexplained arousals per hour, and was sent away with no treatment.

[Pod153]

Please can we take a pause on the water stuff. I’m using distilled water because ResMed told me to. I really don’t care, I’m just using what they said to and it’s fine.

But it doesn’t matter anyway because I have barely slept in two days even with a sleep aid, the machine makes me feel like I’m suffocating and I can’t breathe through my nose any more whatever I do to the humidity. I don’t know what to do. I need help. I can’t do another night like this. I’m trying to persist because they told me to but I can’t sleep at all.

[ozij]

I have acquired a machine! I got the last AutoSet 10 For Her in the ResMed stockroom. Tried on a bunch of masks and the ResMed nasal pillows was the best by far, so that's what I went for.

Pillows masks can be very irritating to the nasal mucosa.
A full face mask could be better for you.

But it doesn’t matter anyway because I have barely slept in two days even with a sleep aid, the machine makes me feel like I’m suffocating and I can’t breathe through my nose any more whatever I do to the humidity.

I understand your frustration, but you can't really know the effect of "whatever you do to the humidity" based on two nights.

First step: try using a comfortable full face mask.
Then: make changes in:

• hose temp - assuming you have climateline
• amount of humidity supplied by the humidifier

It is a very very individual thing - and while each of us can tell you what works best for them, you have to concentrate of finding your own optimum.
Since you're at the beginning, I suggest the best trial would be checking the extremes and working inwards from there.

Connect your climateline hose to the machine.
By turning the dial to the very maximum of temp or humidity you turn them off. Yes, maximum.

[robysue1]

It’s 4:30am. I have slept one hour with the machine before I woke up and have been trying for 2 hours to get back to sleep.

I am so exhausted I can’t stop crying.

I had a really rough time getting used to xPAP myself. I understand the pain and emotions you are going through.

Now I can’t fall asleep, can’t stay asleep, don’t know any more of my pressure is too high or too low, just know it feels like I can’t breathe as long as the machine is on, but the higher the pressure reading on the machine the worse it feels so I guess it’s too high.

You need to try to figure out why you can't breathe with the machine on:

Do you feel like there is so much air coming in through the mask and you cannot exhale fully and comfortably?

Do you feel like there is not enough air coming in through the mask and you cannot inhale fully and comfortably?

Do you feel like the machine is "rushing" your breathing? Is it rushing you to inhale before you are ready to inhale? Or is it rushing you to exhale before you are ready to?

Do you feel like the machine is trying to make you inhale more air than you want to inhale?

It’s still unbearable with EPR. but it’s worse without it.

What pressure are you starting out with? And do you have the ramp turned on or off?

My nose seems to congest basically as soon as I start the machine no matter what I do with the humidity so I feel like I can’t get enough air in through my nose, I have to just gasp for extra room air through my mouth every now and again, but I’m so incredibly aware of the mask sitting on my face that it feels like that is also stopping me falling asleep, it keeps slipping and it’s itchy and heavy and hot and I feel like a full face mask would be worse, I found it unbearable when I was being fitted for a mask.

What mask are you using? You mentioned a nasal pillows mask, but this description sounds like something else.

But two nights on CPAP has entirely reversed the effects of two months of steroid spray and now I can’t breathe through my nose again.

What pressure are you using?

and I’m still just lying here wide awake but exhausted feeling like I’m suffocating. Even fixed pressure feels like I’m suffocating. How can you fall asleep when you’re suffocating?

The first thing is you have to figure out what you mean by "suffocating." Some people say they're suffocating when they're air hungry because not enough air is coming through the hose and they cannot inhale comfortably. Others say they are suffocating because there is so much air coming through the hose and they cannot exhale comfortably. We need to know which kind of suffocating you are dealing with.

I think I have to take it off just to get some sleep. Surely it’s not supposed to be like this. I can’t bear it. I think I’d rather live the rest of my life with poor sleep than no sleep. I am desperate. I have never had insomnia in my life before but i would give anything just to be able to fall asleep. I was already sleep deprived but since starting cpap I essentially haven’t slept in two days.

It may help to start by using the machine during the daytime with no intention of trying to sleep with it. The idea is to just try to get used to the way the thing feels on your face and the way the airflow into the mask feels without attempting to add "try to sleep" to the equation. It would help if you practiced using the machine during the daytime when you were in bed so that you can spend some of the practice time actually lying down in bed.

And for the next week or so, I would suggest starting out the night with the mask on, but if you just can't get to sleep in a timely fashion, then get out of bed and try to relax for a few minutes. Then try again to get to sleep with the mask on your nose a second time. If you still don't have any luck, since your apnea is mild, it may be ok to just abandon the effort for that night. But then try to spend additional time trying to acclimate yourself to the feel of the machine the next day when you are not actively trying to get to sleep.

You might also want to look into a mask liner or a pillows cozy: They can keep the silicone off your face and that can make the mask feel less warm.

[rick blaine]

Forum software had me posting twice. I deleted one if the two copies.

[rick blaine]

Hello again, Pod153,

When I started APAP (12 years ago), the machine didn't come with a humidifier. The air from the PR 551 felt cold and my throat was dry. I worried about it being a site for infection.

When a clip-on humidifier became available from Philips Respironics, I bought one. But I never ran it at more than #1 or #2 (out of 5). I just wanted it to warm the air a little bit. And moisten the air a little bit.

As to what to set your machine at – can I remind you that most of the air at ground level for almost all of the UK is already quite humid. There isn't any place in the UK that's more than 100 miles from the sea.

And the national average for humidity is between 70 per cent and 90 per cent.

I'm of the opinion that your nasal response to the the machine is because the humidity which the machine is adding to the natural humidity is too high. Even when it says 'auto', it is too high – for the UK.

My suggestion – as a fellow UK dweller – is: turn the humidity down low.

Now, to address what seems to me your two main problems. One is 'extreme change sensitivity', and the other is 'having trouble breathing out'.

Here's my best suggestions. To the first: usually, in response to sensitivity issues or "I can't ignore this thing on my face," the best answer is: "You have to keep doing it long enough for your nerve endings and muscle sensors to HABITUATE."

That is 'get used to the sensation so well that you no longer register it'.

This habituation, most people are quite capable of. It's just that it takes time. One study at the the London School of Economics said 66 days, or approx three months.

However, from what you say, you appear to have hyper-awareness. One princess, six mattresses, one pea, that sort of thing. (BTW,I'm not knocking it – it correlates highly with 'artistic expression' and 'great empathy for others'. It's just that, it's getting in your way. )

We need to get your alerting response to changes to 'flatten out'. And to help you with this, I'm going to suggest a way of making therapeutic changes to distressing neurology called 'Havening', which is new, and quick, and very effective.

I could try and explain it myself, but it's easier if I point you to the presentations made about Havening by Paul McKenna on YouTube. Btw1, He didn't invent the method – he got it from two US doctors – Steve and Ronald Ruden – but he presents it well. (And btw2, he's not the only one presenting it on YouTube – but he is the one that comes easiest from my memory at 5.39am UK time.)

What I suggest is:

1. You go learn how to 'haven' yourself.

2. Then, while awake, put the mask on, and with the machine on, do the havening arms strokes. Do this until you get the 'flat' response. Ie, practice this before you get to bed.

3. Take a break.

4. Now do the same in bed. Machine on. Sooner or later something will change for some reason – it doesn't matter what. What matters is that you immediately and gently and caring-for-yourself haven that 'alert' response away.

And do this for as many days as you need to get your 'alert' response to become ok.

Those of my colleagues in the UK who offer Havening as therapy tell me that once they and the client get going, great progress can be made. It certainly doesn't take 66 days.

As for the second issue – you 'getting used to the pressure' – what not enough people are told about CPAP and APAP is that, as treatment progresses, your diaphragm and inter-costal muscles have to learn to work a little bit harder.

And that can take a month or so.

What can give you some help is if you practise by blowing up balloons. Do a good few two or three times a day.

Now, to keep this short, I agree with Julie and Roby Sue (two very experienced contributors here) – you could change to fixed pressure. If you do, I suggest either 7 cm or 8 cm as a first 'trial'.

Patients need to be told that the machine can't go less than 4 cm – it's built that way. And if you are asking for the maximum of EPR, the minimum pressure needs to be set to at least 7 cm so that when you ask for that highest setting of EPR (which is 'less by 3'), you actually get 'less by 3'.

If you can't get the Havening to work from the internet and from what I've said above, private message me, and I will send you some names of trained practitioners in the UK. It may be you would do better with someone helping you. Their fees are not excessive.

[Pod153]

Going to answer everyone all in one post. Thank you all so much.

I understand your frustration, but you can't really know the effect of "whatever you do to the humidity" based on two nights.

The decline in my nasal congestion and breathing is almost immediate, though. Getting air in starts to feel noticeably harder within about 15 minutes of using the machine, and then progressively worsens the longer I wear it. I totally accept that it has only been two days, but in that time I have worn the mask for about 12 hours total. I have tried changing the humidity to auto, to the minimum value of 1, and to 7 (one below the maximum value), each for several hours at a time. Higher humidity seems to slow how quickly it gets worse, but even at maximum humidity it still gradually gets worse and worse. It seems like the sheer fact of air blowing into my nose makes my turbinates furious.

Might more/less heat make a difference? I've kept the temperature at 28C the whole time but I don't know if maybe turning it up or down would help. I'm not clear on what higher heat does to humidity.

Pillows masks can be very irritating to the nasal mucosa.
A full face mask could be better for you.

I've ordered a full face mask now, but I am pretty worried about it because I couldn't tolerate them during my mask fitting even when I was just awake and sitting upright, just as a result of their mechanics. I found my cheeks would immediately inflate if I tried to breathe through my mouth, which made me feel like I couldn’t actually breathe much air in effectively and ended up swallowing a lot of it instead. If I made myself breathe through my nose only, it was more tolerable aside from the weight of the mask, but then if my mouth opened even slightly, air would escape back into the mask which felt horrible and would absolutely be more than enough unpleasant stimulus to wake me. It seems like regardless of mask type I have to nose breathe/tape my mouth shut for comfort, but that defeats the object of using a full face mask and fails to solve the problem of my nose congestion.

Connect your climateline hose to the machine.
By turning the dial to the very maximum of temp or humidity you turn them off. Yes, maximum.

By this, do you mean that turning the dial all the way to 8 will turn the humidity off? So when I tried a humidity of 7 last night, that was the maximum humidity the device can manage? Or am I misunderstanding?

-----

I'm of the opinion that your nasal response to the the machine is because the humidity which the machine is adding to the natural humidity is too high. Even when it says 'auto', it is too high – for the UK.

My suggestion – as a fellow UK dweller – is: turn the humidity down low.

I think this is a very reasonable assumption except that setting the machine at higher humidity seems to slow how quickly the congestion worsens while the machine is on. It gets worse faster when it’s dryer (but it still gets worse at high humidity).

As for the second issue – you 'getting used to the pressure' – what not enough people are told about CPAP and APAP is that, as treatment progresses, your diaphragm and inter-costal muscles have to learn to work a little bit harder

This is very much what it feels like. Having to work extremely hard to breathe to get all the air in. I’ll try blowing up balloons! I used to be a professional singer-songwriter and probably would have coped better with this then, but I don’t use my breathing muscles so much any more.

I will also try havening. I don’t feel I’m having an alerting response to the mask initially — it’s after I wake up for the first time with my nose completely blocked (so far that’s always after about an hour with the machine) and after that I simply can’t get back to sleep and get more and more stressed the more exhausted I get. Do I do it when I wake up? When I can’t get back to sleep? When I initially go to bed before any of that happens?

-----

You need to try to figure out why you can't breathe with the machine on:

Do you feel like there is so much air coming in through the mask and you cannot exhale fully and comfortably?

Do you feel like there is not enough air coming in through the mask and you cannot inhale fully and comfortably?

Do you feel like the machine is "rushing" your breathing? Is it rushing you to inhale before you are ready to inhale? Or is it rushing you to exhale before you are ready to?

Do you feel like the machine is trying to make you inhale more air than you want to inhale?

It’s different at different times. 4.0 feels okay at first but as my nose blocks up it starts to feel like there’s not enough air coming in.

At around 7.5 it feels like there’s too much air coming in for me to be able to breathe it. This also worsens as my nose progressively blocks up through the night — after a few hours it feels like the machine is trying to make me inhale a ton of air, _and_ there’s so much resistance in my nose that I have to sniff hard with every breath to get any of it in. At that point I end up gasping for room air through my mouth.

What pressure are you starting out with? And do you have the ramp turned on or off?

Ramp is off now. It was introducing a separate problem where every time the pressure notched up slightly it would pull me out of drifting off to sleep, so I turned it off just to remove another variable. Pressure: it still seems to start at 4.0 but after wearing the mask awake for a few minutes it settles at 7 or 8. The maximum I've seen it go up to is 10.5.

What mask are you using? You mentioned a nasal pillows mask, but this description sounds like something else.

ResMed P30i. It’s a nasal pillows mask and all of the above is still true. It may well be less itchy/heavy/hot than other mask styles but it is itchy/heavy/hot nonetheless. It also constantly slips up at the back of my head and needs readjusting throughout the night.

It may help to start by using the machine during the daytime with no intention of trying to sleep with it. The idea is to just try to get used to the way the thing feels on your face and the way the airflow into the mask feels without attempting to add "try to sleep" to the equation. It would help if you practiced using the machine during the daytime when you were in bed so that you can spend some of the practice time actually lying down in bed.

This makes complete sense, but my worry about wearing it during the day as well as at night is that it seems to take about 12 hours for the inflammation in my nose to come down enough for me to be able to breathe through my nose again. If I’m wearing it during the day as well I’m worried that’s going to get even worse. I feel like my nose desperately needs as many hours as possible to recover in between uses. Maybe wearing it without turning it on might still help?


Thank you all again. I am so exhausted I can't think straight. Thank you all for your help.

[rick blaine]

To Pod153,

Havening relies on a natural 'mechanism' or response we are all born with. The stroking of the upper arms, from just below the shoulders down to just above the elbow, needs to be both sides and at the same time. When that is done, it sends a set of 'soothing' and slowing impulses into and across the amygdala, changing the state it is in. The impulses also encourage cross-hemisphere communication.

This set of impulses need to be kept up for some time (it can be as much as 10 minutes), and the effect may be enhanced by moving the eyes repeatedly from left to right and back again. It is also enhanced by humming a well-loved song.

The general idea – as with any of these methods when 'applied to self' – is to practice them first in a non-stress or non-anxious context – so that you can get used to them and get a felt sense of what a 'result' is. And feel confident about completing the process. And then, and only then, apply them in a stress-full situation.

So, if you are doing this on your own, then that means before bed and out of bed (but with the mask on since that, we assume, is one of the triggers).

Once you have got the havening to work out of bed, you can move on to in-bed – and you can include the 'just having woken up' bit.

I know that this easy for me to say, and for you – given what you have described – hard to do. But the idea is to, one way or another, get some success (in changing your response) and then to build on that success.

That is why I suggested you might go and see a trained practitioner. They can do the stimulating and observing and tracking of your progress, and they can make sure that, in at least one context – his or her 'consulting room' – you get a smoothed out result.

I will put a couple of names in your private message box. And most practitioners have contact details somewhere on the net.

[Pod153]

I guess I’m also not completely sure that it actually is an anxiety/stress response, particularly because it’s not happening immediately but kicks in after my nose has congested so much that I actually can’t breathe properly and wake up gasping for breath through my mouth. It’s not just a subjective sensation, the airflow through my nose decreases the longer I keep the machine on (I have had to entirely mouth-breathe for most of the day today and am only now starting to be able to breathe nasally again, which is far worse than I ever was at baseline). I feel like I need to figure that out before treating myself psychologically.

[SleepGeek]

I guess I’m also not completely sure that it actually is an anxiety/stress response, particularly because it’s not happening immediately but kicks in after my nose has congested so much that I actually can’t breathe properly and wake up gasping for breath through my mouth. It’s not just a subjective sensation, the airflow through my nose decreases the longer I keep the machine on (I have had to entirely mouth-breathe for most of the day today and am only now starting to be able to breathe nasally again, which is far worse than I ever was at baseline). I feel like I need to figure that out before treating myself psychologically.

Could you be having an allergic reaction to your mask?

[rick blaine]

To Pod153,

If you can breathe something like easily via mouth breathing, but there is increasing resistance/ swelling/ obstruction in the nasal passages after a period of time, then using a nasal mask may be a form of treatment that is now beyond your reach, and you should accept the alternative.

I could show you x-rays and scans of my face over the years all of which show one nostril completely blocked, and the other nostril half blocked. I wasn't born that way, and how I got to that state-of-affairs – well, it's a long story. When OSA came along, I just accepted that I need a full-face mask. It's the way it is.

Havening treatment resolves a whole panoply of emotions/ tensions/ reaction issues. It works to reduce any form of arousal – however that arousal is prompted or begins. That is its usefulness.

[ozij]

The decline in my nasal congestion and breathing is almost immediate, though.

Been there.

Might more/less heat make a difference? I've kept the temperature at 28C the whole time but I don't know if maybe turning it up or down would help. I'm not clear on what higher heat does to humidity.

Yes, turning down the temp might help.
More heat = more relative humidity. But the very heat could be causing your turbinates to swell, and you may do much better with less heat.

Using an FFM:

I found my cheeks would immediately inflate if I tried to breathe through my mouth,

If you can breathe through your nose, there's no need for you to try to breathe through your mouth in the full-face mask.
Turn on your machine (disable autostart) point the pillows at the back of your hand feel the flow of air.
Do the same with a full-face mask. You can feel the difference. Your nose is congesting in response to the mechanical irritation of the flowing air from the pillows. There's less of that mechanical irritation it when you use a full-face mask.

It seems like regardless of mask type I have to nose breathe/tape my mouth shut for comfort, but that defeats the object of using a full face mask and fails to solve the problem of my nose congestion.

Think of a garden hose and what happens to the stream when you half close the opening. The aim of an FFM in your case is to lower the mechanical irritation to your nose, which is what causes your congestion; it doesn't mean you have to breathe in a certain way.

ozij wrote: ↑Sat Dec 03, 2022 7:54
Connect your climateline hose to the machine.
By turning the dial to the very maximum of temp or humidity you turn them off. Yes, maximum.
By this, do you mean that turning the dial all the way to 8 will turn the humidity off? So when I tried a humidity of 7 last night, that was the maximum humidity the device can manage? Or am I misunderstanding?

To the very very end. After 8 comes "off".

I think this is a very reasonable assumption except that setting the machine at higher humidity seems to slow how quickly the congestion worsens while the machine is on. It gets worse faster when it’s dryer (but it still gets worse at high humidity).

It's the heat, on top of the dryness.

[Pod153]

Will try and respond to the various excellent points made here properly later, but I had a far better night and slept for nearly 7 hours. Still very tired, I guess from the sleep debt and my increasingly irregular bedtimes, but I don’t feel like my brain is glitching out like it was yesterday.

The catch: the biggest contributor to this was that I used oxymetazoline in just one nostril, which made a vast difference. Being able to actually take in the air being fired at me is miles better. However I’m acutely aware oxymet can’t be a long-term solution due to rebound - but I will probably be doing it until my full face mask arrives. I figured alternating nostrils might let me eke it out until Royal Mail delivers.

I also turned down the heat after eating an ice cream yesterday and finding it seemed to clear my nose. I figured that since cooling felt good, I should go with a lower temp on the machine. I’m now at 25C and considering going lower still - the machine itself is on the floor by my bed so I’m hoping that should prevent any condensation from reaching me. My non-oxymetazoline nostril is still congested but I think it’s less so than on previous attempts. I feel like what I actually want is cold and humid, but I guess that’s not really a thing. ozij, you were on to something!

One nice thing. Part of the reason I’m pursuing this despite it being unusual to use CPAP for an AHI as low as mine in the UK is that I have POTS, a form of dysautonomia. My sleep consultant thinks that my microarousals might be either causing or worsening my POTS. Symptom-wise I still feel much the same, but yesterday my smartwatch pinged me to inform me that my sleeping beat-to-beat heart rate variability (which has always been absolutely abysmal, which my cardiologist told me was to be expected in POTS) has tripled from my usual baseline on all three nights that I’ve been using the CPAP.

So I feel like I’m on the right track here if I can just figure out how to actually breathe for the whole night