New machine....NHS.. - really bad headaches, mask leaks

[andysnorer]

Just a quick hello from a new member.
I have been using CPAP for 17 years and everything was good, with me being fully compliant and getting good sleep, until 2 months ago when I received a replacement for my trusty Resmed S8 Escape - a Resmed S10 Airsense. I am sticking with my lovely Quattro full face mask which I love, however I don't love the new machine.
It was supposedly set up identical to my last machine a Resmed S8 Escape, but it clearly isn't because 1) it is using the ramp method which I specifically asked them not to activate and 2) The pressure is so high that it is blowing the mask - Quattro which I love - completely off my face. Apparently the hospital are monitoring me for 90 days and can alter the settings remotely as they please, something I am not happy about at all. Last week I got in touch with the hospital explaining the problems with the pressure and mask leaks, and the guy then told me that I was getting mask leaks????? I then told him that the 2 little smiley faces were yellow each morning meaning the machine was not detecting the all too obvious leaks. He then told me that he would check my machine pressure and deactivate the ramp setting. I should like to add, that since he did something to the machine, the red face is telling me the mask was leaking every single morning. So, I went to bed that night and initially the pressure was OK, I could breathe easily and the mask was fine. Then at around 4.00 to 4.30 (the same as every night since I have had this) the machine went mad again and the pressure was unbearable, the only thing I could do was turn the machine off and on again for the remaining 2 hours, during which time I couldn't get back to sleep. I have had regular thumping headaches in the morning, feel absolutely shattered and also have trapped wind from the amount of air which is getting to places where it shouldn't. I am totally fed up and don't really want to contact the hospital again, because I have basically lost trust in them. My wife is also not happy as her sleep is being disturbed as well. Please help!

[Pugsy]

Welcome to the forum.

Where are you located?

[andysnorer]

Welcome to the forum.

Where are you located?

South East England.

[Pugsy]

I suspected you were in the UK. They do things a little differently than here in the US and I wanted to confirm so that one of our forum members who is in the UK and familiar with things there could maybe help you a little better.

I have added NHS to your topic title to get his attention.

Are you really using the AirSense 10 Elite machine that you are showing in your profile?
It is a full data machine which means there is available software to use to see exactly what the machine is doing during the night but the Elite is a fixed pressure machine...it uses the same pressure all night long...it can't go "mad" with pressure increases during the night unless there is something wrong with the machine.

Check out the software and lets see just how bad the leaks were or have been when you think the machine is acting up.

https://www.sleepfiles.com/OSCAR/

viewtopic/t158560/How-to-post-images-for-review.html

[K5MOW]

Welcome to the forum.

Roger

[rick blaine]

Hi andysnorer,

I'm posting from the UK, and I know a bit about the NHS.

1. Just to be clear what 'ramp' means. It is not repeatedly changing the pressure, both up and down, and in 'fixed-step' amounts, and every four minutes.

It means changing the pressure (a) just once, and (b) usually only at the start of a sleep session, and very gradually* – indeed, in one smooth 'climb' – until it reaches your minimum (or fixed) pressure.

Ramp is a 'comfort feature'. It's there so you can get off to sleep, and it's all about options.

You can choose the pressure the ramp function starts at. It doesn't have to be 4 cm.

* And you can also choose how long it takes to get from 'start-of-ramp' to 'ramp-climb-finished'. This 'how long' comes in five-minute intervals. Anything from 5 minutes to 45 minutes.

And all of this process is separate from auto-adjusting.

You also can turn the ramp off. Not have it at all. It's your choice. It can be turned on and off remotely. But it can also be turned on and off locally – by you, the user. (See the manual if you don't know how to do that.)

I mention all of this because several people these last few weeks have used the word 'ramp' inappropriately.

2. The idea of having your machine link up with the NHS hospital over the mobile-phone network is so the sleep-medicine staff can treat and support more people in the same number of work hours – because, once on the books, patients don't have to bring their-self and the machine in for follow-up appointments, especially in the first year.

Sleep apnea has 'taken off' in the UK over the last few years. Many more patients are being referred for investigation and treatment than 10 years ago. And remote monitoring and adjusting is one way for UK hospitals and their SMDs to treat more patients without having to employ more nurses and sleep physiologists.

3. I agree with Pugsy. It doesn't make sense for you to say "the machine went mad [and increased the pressure]" – because the machine showing in your profile is a fixed-pressure machine.

Can you take another look at the machine – both at the front of the machine and also on the underneath. What do the numbers say?

4. There's something not quite clear going on in your case, andysnorer with respect to leaks. You say, in effect, 'only a few'. The person you spoke to at the hospital who is reading from his or her computer screen says, in effect, 'enough to do something about'.

It is possible that leaks may be getting so bad at particular times, and your mask dislodges so much, that the escaping air gets in your eye, and makes a noise, and in general alerts you enough that it seems like an increase in pressure. But it isn't. It's just a really bad leak.

But that's just 'maybe'. And neither Pugsy, nor I, nor anybody else here can offer better than 'maybes' without seeing some data.

If you can show us the data from your machine using shareware – see the links that Pugsy posted above – then maybe we can suggest things.

5. Failing that, you may have to take yourself and the machine back to the sleep-medicine department. If the machine is suddenly and erratically changing pressure, then it may be faulty, and needs to be replaced.

[rick blaine]

Hello again, andysnorer,

I had a couple of more thoughts – along the lines of 'general problem solving'.

6. If you've been on CPAP for 17 years, that dates from back when sleep-apnea treatment was not at all widespread in the NHS, and you were quite a pioneer in terms of getting treatment.

Were you not on regular follow-ups across those 17 years? And was the S8 not a replacement for some previous machine? (Assuming the life of a machine is on average five years, and sometimes as much as 10 years.)

What I'm saying is: you've changed machines before. What is the difference this time?

7. In any event, is it possible, that while 'everything was good' and you were 'getting good sleep,' that the S8 was gradually declining in performance and pressure? But you weren't aware of that? And it wasn't picked up at follow-ups?

And now that you're having to deal with a brand new machine, working properly, the pressure you've been prescribed is more noticeable?

8. You say 'the pressure [with the new machine] is so high' – do you think it's possible that the clinic staff have not read your notes properly, and have set your new machine at too high a pressure? More than it was before?

Conversely, has anybody at the hospital sleep-medicine department or clinic suggested you might need a new pressure-needed assessment? A good many patients find they need more pressure with age. And you are now 17 years older than when you first got treatment.

If you do need a higher pressure for only some of the time, there are ways to do that. (See point #10 below.)

9. The Quattro is a good mask – I still use it myself. But since it is from a previous generation of masks, getting replacement parts for it – particularly the cushions – has become harder and harder. Is it possible that the leaks are coming from your mask, and that you need, at the very least, a replacement cushion?

And: does the sleep-medicine department you go to still have replacement cushions for the Quattro? Did you get a replacement cushion when you transitioned to the ResMed Airsense 10 Elite?

The last time I talked to to ResMed UK, they still had replacement cushions (technically, cushion plus clip – the two are sold together). But you would have to buy same yourself (price last time I checked, £52 – but no VAT).

You could ask if the NHS would refund that .... But they're much more likely to say, 'It's time you moved on to a new model. Here, try this.''

10. When you were first issued with a machine, fixed-pressure was the standard treatment. But many doctors now in the UK and many sleep-medicine departments now in the UK have moved to auto-adjusting as standard. Has no one at your clinic mentioned this as a possibility?

I mention it because, if your sleep is now so poor with the Elite, there may be a case for the staff at your sleep-medicine department issuing you with a ResMed Airsense 10 Autoset. An auto-adjusting model.

Anyway, those are my thoughts.

And the more I think about it, you and your case deserve a review. So if you can bring yourself to going back to your sleep-medicine department ...

When I think of the NHS, I don't think 'Is there trust? or 'Isn't there trust?' I think 'Where is the solution, and how do I get to it?'

[andysnorer]

Hi Rick, thanks for the in depth replies, very good indeed.
At the moment, with the new machine, I am being monitored by the sleep centre and they are able to change the settings remotely, which they have done at least once (last week when I phoned them). I know about the ramp - either on or off, I prefer off, and I also know that it is a gradual increase in pressure to specific set pressure.
This is my 3rd machine in 17 years, and right from the start I settled into the routine and was fully compliant, never once missing a 6 to 7 hour night's sleep.
I thought I had a good nights sleep last night, only to awake to find a grumpy wife who had recorded the noise I or my machine or both were making at 4.30am. It was a combination of me snoring and the machine pressure, really loud. The machine didn't record any instances of mask leaks last night and to be honest I think that is correct.
I also have had a lot of bloating, where I feel as if there is trapped wind, I assume because the pressure is too high.
I haven't got a headache today but I do feel absolutely knackered.

[Holden4th]

Surely, with a fixed pressure machine, all the NHS have to do is set the machine to the same pressure as your S8. So if that was, say, 11 then that's what they do. From what you've posted it seems that they haven't done this and maybe you can do this yourself. If you know what your pressure setting on the Escape was then simply accessing the clinical menu of the Airsense 10 and setting that pressure might help fix this problem.

This Youtube clip shows you how to change the settings yourself.

https://www.youtube.com/watch?v=qIfHud8ZhDE

This video shows you how to get into the clinical menu of your old Escape so you can check your settings

https://www.youtube.com/watch?v=6QfyoZFBEFw

Best wishes.

[andysnorer]

Just a quick update.
I can't get in touch with my sleep centre. My quality of sleep was bad over the weekend, but last night I managed to sleep without any leaks after going to bed at 1.30 in the morning after falling asleep downstairs. The sound which I initially thought was snoring, was in fact the mask leaking, something confirmed by my wife recording it.

[rick blaine]

Hi andysnorer,

After a bit more thinking about what you've posted, it seems clear to me that, when they issued you with this new machine, then – at that time or shortly after – they increased your fixed-pressure from what it was before.

The bit about the ramp being on or off, and the bit about remote-adjusting versus going for an in-person appointment – those are just red herrings.

The only deduction I can make, Watson is that, whatever pressure you were on before, the staff at the sleep-medicine department think you need a higher one. And they have 'made it so'.

(Were you on the same fixed pressure for all those 17 years? Or have they increased it once or twice before? If you don't know, it should be in your notes.)

As I said above (at #8), one common factor for needing an increase in pressure is age. As we age – and you are 17 years older than when you started CPAP treatment – the tissues in our airways become even less firm than the less-than-firm they were five years ago.

And one of things that goes along with the need for increased pressure is a greater propensity to leak.

The contact area and seal between mask and skin that 'holds' at 10 cm doesn't hold at 12 cm. At least, not all of the time.

And the advice on 'what to do about leaks?' is the same as it's always been. Any and all of:

a. Check the age and condition of the mask, especially the cushion. And if need be, replace it. Or, as can happen with the Quattro, replace both the main body of the mask and the 'swivel elbow'. When that joint begins to leak, you need to replace both.

b. Check the elasticity and fit of your headgear. If the sleep-medicine department doesn't have a replacement, then ResMed UK probably still do. Price of replacement headgear, £23.

c. Ask at the sleep-medicine department if you can try out a different mask or two. I get that you like your Quattro, but faces can change over the years. And some of the newer masks are very good.

d. Wash or wipe every day those bits of the mask that come into contact with the skin. Some people are surprised, but even just a hint of skin oil from the previous night can make for a poor seal.

(And since bio-film is real, you might as well wash the rest of the mask every day too.)

e. Use a mask liner. In the UK, you can get liners for most makes and models of mask from here:

https://www.hope2sleep.co.uk

Or you can make your own from cutting up a large handkerchief or an old shirt.

Lastly, as I also said before, there's an argument for you being issued with an auto-adjusting machine.

If you live in an area where the policy is to issue only a fixed-pressure machine, ask if an exception might be made in your case, on the basis of clinical need.

[LSAT]

When you turn on your machine, the current pressure setting shows on the screen...what does it say?

[andysnorer]

Pressure is set at 14 and humidity at 6.
I clean my mask on a daily basis, also the reservoir.
Last night both my wife and I were aware of leaks, but the machine still showed two yellow smiley faces this morning with 6.09 hours of sleep.

[Pugsy]

You get Mr Smiley face for leak management until you spend 30% or more of the night in large leak territory (over 24 L/min).
So while both you and your wife noticed some leaks the overall total for the night was less than 30% of the night.
You can spend 29% of the night deep into large leak territory and still get Mr Smiley to show up on the machine.

If you really want to evaluate real details you need to use the available software. It takes a lot of prolonged big leaks to make it to 30% of the night.

[andysnorer]

You get Mr Smiley face for leak management until you spend 30% or more of the night in large leak territory (over 24 L/min).
So while both you and your wife noticed some leaks the overall total for the night was less than 30% of the night.
You can spend 29% of the night deep into large leak territory and still get Mr Smiley to show up on the machine.

If you really want to evaluate real details you need to use the available software. It takes a lot of prolonged big leaks to make it to 30% of the night.

Thanks Pugsy, I am assuming that the leaks start around 3 or 4 in the morning mostly, so with the 30% rule that makes sense. I think I may look at cleaning choices for the mask as well, because I swap beteen handwash and shower gel and I think the shower gel works best. Once a month I give the reservoir and mask a deep clean - take the mask apart using dishwasher tablets, which obviously means I have to thoroughly rinse the parts well after use.