Air pressure problem...NHS

[ladnor]

I’m a new member and would like to say hello to all

I was diagnosed with severe Apnea NHS. and have been using a Respironics Dream Station for about two years. I don’t feel any benefits from it as I also suffer from cfs. But I suppose there are hidden benefits.

Pressure settings are from 4 to 20. Average pressure Re SleepyHead around 9

Two nights ago the machine changed the way it was working. Airflow increased inflating the mask more so than usual, and was very noisy. In a while the mask was leaking badly and making noises. I checked the pressure and it was 12.5. Naturally I couldn’t get to sleep so I stopped using it, which is not what I wanted to do. I altered the straps, loosening and tightening to the point of the mask hurting but nothing changed. I changed the filters and it was better starting the next night but still hitting 16.9 at one point.

I contacted Phillips, they asked a lot of questions, most of which I had already answered in my email, but they didn’t seem able to give any advice, other than that I am due a new mask next month. At 82 I’m no techno head, but it’s a choice of getting the thing working properly or chucking it out of the window

[rick blaine]

Hi ladnor,

A number of things:

1. Are you not attending a sleep-medicine department or clinic at an NHS hospital near you?

And do you not have some kind of annual follow-up?

I know that over the last few years GPs have been sending more and more people for sleep-apnea treatment (because it works and is cost-effective) – so much so that some clinics are now only offering a two-year follow-up. (As I said, it used to be once a year.)

But if you're having problems, you don't have to wait till your next scheduled follow-up. The policy at most clinics is that you can ring them up at any time if you need help. I think you should do that.

2. Your situation is complicated in that you also have CFS. For some people, the point of sleep apnea treatment is not so much the 'feeling much better' bit as 'thankfully, it's not getting any worse' bit.

3. In my opinion, your machine should not be set to minimum 4, maximum 20. That helps very few people.

It should be set to a minimum pressure which is 1 or 2 cm below your average (or 'mean'). I note you say you're not very tech. But you do have a computer and sent your post to us. So, do you think you can download from the internet some free software?

If yes, people here will give you the internet address or 'link', and help you use the software.

4. You say, "Two nights ago the machine changed the way it was working," and then describe what is clearly more leaks. The more leaks come from more pressure. That's the way the machine is meant to work. The machine is sensing you need more pressure – but that means more pressure on the point of contact or seal where the mask meets your face.

What is a seal good enough to 'hold' at 8 may not be a seal that is good enough to hold at 10.

You've tried asjusting the straps of the head-gear, but no result. The next thing is to try using mask liners (to get a better seal). There's a UK-based outfit called Hope2Sleep which sells some. See here:

https://www.hope2sleep.co.uk

And some people make their own by cutting a liner out of an old shirt or a large handerchief.

5. Also, masks tend to leak more as they age. In a full-face mask, for example, the joint where the swivel elbow meets the main part gets worn and lets out air. And the silicon cushion becomes inelastic, bends less, and moves away from the face.

Most mask makers say their masks should be changed once a year. And if you haven't had a follow-up at your sleep-medicine clinic for two years ... that would be another reason for giving them a ring now – to get a replacement mask, or even try a different model or make of mask – as well to ask for a general review.

[D.H.]

Yes, you should replace the mask, it might not be fitting as well as it dod when it was new.

Also, your provider (which is the NHS if you're in the UK) has the ability to change the settings remotely. Might they have done that?

[andysnorer]

Yes, you should replace the mask, it might not be fitting as well as it dod when it was new.

Also, your provider (which is the NHS if you're in the UK) has the ability to change the settings remotely. Might they have done that?

I have just submitted a first post on this forum, and it is basically to do with the problems I am facing with the kit. I believe someone is messing with the settings and I would rather they did not. I am also dealing (or not dealing) with ridiculously high pressure settings, which are blowing the mask off my face at 4.00 in the morning - consistently.

[ChicagoGranny]

If you have any comments for andysnorer, please put them in his thread ( viewtopic.php?f=1&t=177098&p=1323889#p1323889 ). Try to avoid hijacking ladnor's important thread.

[ladnor]

Hi Rick, that’s a comprehensive reply, many thanks

Yes I'm ok using the Internet

Apparently I’m under a sleep clinic at a local hospital, it was through them I was diagnosed. I was told I would have a follow up in a year but so far haven’t heard anything, I first started using my machine in Nov, 2017, but the way the NHS is at present I’m not surprised. I try to keep away from hospitals, especially after an overnight stay last year in the over eighties wards. But I have two appointments in Oct, one for pacemaker follow up and the other for ct virtual colonoscopy, that’s enough for me for a while

I was told via Respironics that my prescription setting is 4 to 20. Sleepy Head shows average pressure at 8, so yesterday I reset minimum to 6 and max to 15, but last night I had an ahi of 9.5 instead of the usual of around 5 though this may be due to leakage and being woken up with raspberries being blown in my ears, my wife says she can hear it from her room

Today I’ve received from Respironics a new Amara mask plus tubes and filters etc. The headgear is fitted with magnetic clips, and as I have a pacemaker I’m not using it until I’m sure it’s safe, Philips say the magnets must be kept at least 2 inches 50mm away from the pacemaker but how can i be sure of that. I think I may be able to remove the magnets and fit the clips from my old headgear, which so far I’ve been unable to look at thanks to the other problem. Hopefully I can do it tomorrow and see how it goes.

Hi DH, I don’t think anyone is changing the settings as they are always the same

[rick blaine]

Hello again, ladnor,

I see you're making all sorts of efforts to get optimum treatment. If I can again chip in with a number of points.

1. Magnetic clips on masks are 'the latest thing' or 'exciting new feature'. The other major manufacturer of machines and masks in this clinical area – ResMed – brought out their version of a magnetic clip mask a couple of years ago. And now PR have one too.

I have tried the ResMed one. The foam version gives a very good seal. But even their large size is just a bit tight on my face.

And I also 'hae me doots' about keeping magnets close to the body for any length of time.

And, to be honest, I don't know it there's really any great advantage in using magnets for the clip. With all the other masks I've tried – and that now runs to six models – I never really had trouble finding the clip socket or post or whatever – not even in the dark.

2. There are alternatives to the (magnetic) Philips Respironics Amara and the (magnetic) ResMed f20 (both varieties), which you might want to explore. And that's where the sleep medicine department comes in.

If they were doing it right, what should have happened at your first visit was that they (a) introduced you to the machine and explained the key controls, and (b) tried out a range of masks on you – with the machine running.

This last bit is very important. Getting a good mask fit is one of the key variables of treatment. And because of that, the first appointment should be at least 30 minutes long.

If your first visit wasn't, well, I can understand that. Things have changed a lot over the last few years. GPs have found that treatment for OSA is effective and cost-effective – so they're referring more and more people. With the sleep-medicine department having the same number of staff, or only modest additions.

Which is why appointments are now 20 minutes, And follow-ups at some hospitals are every two years – when in my first six years of treatment, they were annual.

If you didn't get to try on a range of masks before, that's unfortunate. But it doesn't mean you can't ask for a change of mask now. I also suggest you ask if you can be seen by one of the more senior sleep-medicine staff, so they can bring their greater experience to bear.

3. Another way you can get to try on several masks is to go along to one of the open days that that ResMed UK offer – either in Abingdon, or Bristol. Their range of masks is a wider than that of Philips Respironics UK. And at ResMed's open days, they let you try them on – with the machine running.

There's no obligation to buy – and no, there's nothing to stop you using a ResMed mask with a PR machine. If you look at the tag line below, you will see that's what I do.

The number for ResMed UK is: 0800 907 7071.

4. You say Philips Respironics told you what your prescription is. (And they know how?) And also, that you've used Sleepyhead to get the average. And that you've made a couple of changes.

The thing with making changes is not to assess their effect after only one night. The rule of thumb is: (a) make only one change at a time. And (b) evaluate after at least three or four nights. After a week is even better.

And ... there's more I can add about pressure adjustment, but it's getting late for me here. So I'll post this now, add the rest later.

[ladnor]

Hi Rick

When I originally attended the sleep department they did try several masks, as I’m a mouth breather this limited them, I found the Amara the best of the bunch as I can watch tele comfortably with it. They did all the tests that I’m aware of. The only problem I have are the air flow holes at the top, the air blows into my eyes, putting a finger above them stops it so that’s where it’s coming from. I was unaware of this at my original fitting and kept thinking there was a leak and the nurse kept tightening the straps. It was very uncomfortable using the mask until I realised this and adjusted it myself.

Regards trying other masks, I know money doesn’t matter when it comes to your health, but being on a pension does add some restraints. This does make me a bit annoyed, I have hearing aids care of NHS, they’re ok but not brill, I can get better ones if I pay hundreds if not thousands of pounds for better ones, unfortunately the way of the world

I get your point about evaluating changes over a few nights, also only making one change at a time makes sense.

I’m going to stick with the original clips, the so called “latest thing” is not always for the better though some must have them

I don’t know how PR know things, if they do, when I have to contact them they do go over ground that’s already been covered, but the good thing about them is that they respond quickly and they sent me a new mask etc., after I told them of the problem
Regards

[Pugsy]

There are some newer better full face masks available now than were available when you first started started therapy a little while back.
The Amara View isn't the best option now for a lot of people.
Respironics took the Amara View and made it better with the DreamWear full face mask version...and ResMed now has something similar that is the F30.
Try a newer mask if you can.

[D.H.]

. . .

Hi DH, I don’t think anyone is changing the settings as they are always the same

I didn't really think that this was likely. However, it was important to put that possibility out there, just in case.

[babydinosnoreless]

Hello again, ladnor,

1. Magnetic clips on masks are 'the latest thing' or 'exciting new feature'.

And, to be honest, I don't know it there's really any great advantage in using magnets for the clip. With all the other masks I've tried – and that now runs to six models – I never really had trouble finding the clip socket or post or whatever – not even in the dark.

Just wanted to jump in and say the magnetic clips are a life saver for me. I am claustrophobic, so when I had my sleep study I panicked when I could not get the clips off. Even now after close to a year with a bilevel, I still wake up panicked some mornings but with the magnetic clips I am able to tear the mask right off. If I couldn't I don't think I could face putting the mask on every night.

[ladnor]

Strong concerns about magnetic clips which PR advise to keep 2inch, 50mm away from a pacemaker or other medical devices

I have undone the left strap and let it dangle and the magnets would sit right on my pacemaker which is situated high in the chest just below my collar bone. Taking some time to properly waken I’m not sure I would take care when removing the mask so it’s the clips for me

I don’t understand why it’s not determined if any implants are fitted before providing magnetic clips. I know we should always read the manual carefully but not everyone does, not always their fault

Better safe than sorry PR