just cannot get it right uk

[Juggsy75]

so been on cpap for 5 years, and up until; a year ago my ahi was very good, in the zeros and no higher than 2 id say at a push, but since then I've put some weight back on, no more than I was at start of treatment though, but my ahi are all over the place, I had a score of 16 the other morning after a night shift in no more than a 6 hour sleep, last night was 6.5, and I seem to be noticing lots more central's than usual, now I asked my hospital if I had central or obstructive sleep apnea and they said I had obstructive, so these centrals are worrying to me, ive watched the video to try to see if they're real or just SWJ and im not 100%, what I do know is though is that I am a very restless sleeper, I toss and turn quite a lot, very rarely do I sleep s=olid through the night. my score also seems elevated whenever I have periodic breathing.

here's some pictures of last night, night before and how the centrals look zoomed in a bit

[Julie]

Why are you on fixed (one) pressure rather than auto?

[Juggsy75]

Why are you on fixed (one) pressure rather than auto?

It’s the machine the hospital gave me, I’ve been using it no issues last 5 years, is there a reason to be on auto then

[Pugsy]

It wouldn't be impossible for the OAs and hyponeas you are seeing happening to be causing arousals which in turn could be causing the centrals to be flagged as false positives.

Your pressure is sub optimal...not preventing the OAs and hyponeas very well. Might be related to sleeping position or even REM stage sleep. You need more pressure to better prevent those obstructive events from ever happening.

The one central you zoomed in on...it's iffy but if that were mine I would look at that big breath right before the flag...that's an arousal breath. We don't take big breaths like that when asleep. Looks like maybe a toss and turn and change position where you maybe changed position and held your breath during the change. That's common enough. It was so brief that you likely don't remember the arousal though.

At any rate you can't fix central apnea with your machine but you can fix the obstructive apnea stuff....and it needs to be fixed and just maybe if you don't have so many obstructive events happening your centrals will reduce because the chance of arousals will reduce.
Fix what you know needs to be fixed and see what's left to worry about.

If it were me...I would change the settings to auto mode if possible0 and let the machine go higher when it needs to go higher.
But you are in the UK and I know they frown on that stuff and you might not know how to do it but it's easy if you want to change the settings yourself. If you don't...you need to get back with your medical care team and get them involved.

[rick blaine]

Hi Juggsy75,

Look on the bottom of the machine for the word 'REF' and tell us the number next to it. If it says '461' then you have a fixed-pressure machine, made in West Germany.

That means it can't go to auto – I say that although a number of 460s and 461s were made which could vary the pressure for 30 days – so that the staff at the sleep medicine department could find your '90 per cent' pressure – the pressure you were at or under for 90 per cent of the time. And that is what they used for fixed pressure treatment.

Your charts look as if you would benefit from an auto – but here's the thing: the NICE guidelines for treatment by the NHS still say that treatment with a fixed-pressure machine is the approved treatment standard. That is in spite of the fact that many doctors in the UK and in the sleep medicine departments of the NHS's 150 foundation trust hospitals have seen the clinical benefits of using auto-adjusting as standard. And have made issuing and auto-adjusting machine their hospital's policy.

So. What to do about it?

(1) You could go back to the hospital/ SMD you're with, and ask if they are willing to match these other hospitals. Even if it takes an 'individual funding request'. Ie, some doctor makes the case for them spending more money on you.

Or (2) you could go back to your GP, and through his or her Clinical Commissioning Group, ask to be referred to a hospital that does have auto-adjusting as policy.

Or (3) you could put your hand in your pocket and buy a machine yourself from PR UK in Chichester Cost about £600 – but should last five years.

Now, even if you own your own machine, you can continue to be a patient at an NHS sleep medicine department, if they are satisfied that the machine you are using is one they can approve of. And if you bought a PR Dreamstation Auto it would be.

AND as an NHS patient you would still be eligible for annual follow-up, mask spares, mask replacements, temporary loan of a machine if ever necessary, and cover with the DVLA.

[Juggsy75]

It wouldn't be impossible for the OAs and hyponeas you are seeing happening to be causing arousals which in turn could be causing the centrals to be flagged as false positives.

Your pressure is sub optimal...not preventing the OAs and hyponeas very well. Might be related to sleeping position or even REM stage sleep. You need more pressure to better prevent those obstructive events from ever happening.

The one central you zoomed in on...it's iffy but if that were mine I would look at that big breath right before the flag...that's an arousal breath. We don't take big breaths like that when asleep. Looks like maybe a toss and turn and change position where you maybe changed position and held your breath during the change. That's common enough. It was so brief that you likely don't remember the arousal though.

At any rate you can't fix central apnea with your machine but you can fix the obstructive apnea stuff....and it needs to be fixed and just maybe if you don't have so many obstructive events happening your centrals will reduce because the chance of arousals will reduce.
Fix what you know needs to be fixed and see what's left to worry about.

If it were me...I would change the settings to auto mode and let the machine go higher when it needs to go higher.
But you are in the UK and I know they frown on that stuff and you might not know how to do it but it's easy if you want to change the settings yourself. If you don't...you need to get back with your medical care team and get them involved.

Yes last time I altered it I had a row off the hospital, I’ll ring them tomorrow, but they’re not seeing anyone due to covid

[Juggsy75]

Hi Juggsy75,

Look on the bottom of the machine for the word 'REF' and tell us the number next to it. If it says '461' then you have a fixed pressure machine, made in West Germany.

That means it can't go to auto – I say that although a number of 460s and 461s were made which could vary the pressure for 30 days – so that the staff at the sleep medicine department could find your '90 per cent' pressure – the pressure you were at or under for 90 per cent of the time. And that is what they use for fixed pressure treatment.

Your charts look as if you would benefit from an auto – but here's the thing: the NICE guidelines for treatment by the NHS still say that treatment with a fixed pressure machine is the approved treatment standard. That is in spite of the fact that many doctors in the sleep medicine departments of the NHS's 150 foundation trust hospitals have seen the clinical benefits of using auto-adjusting as standard. And have made issusing auto-machines as standard their hospital's policy.

So. What to do about it?

(1) You could go back to the hospital/ SMD you're with, and ask if they are willing to match these other hospitals. Or (2) you could go back to your GP, and through his or her Clinical Commissioning Group, ask to be referred to a hospital that does have auto as policy.

Or (3) you could put your hand in your pocket and buy a machine yourself. Cost about £600 – but should last five years.

Now, even if you own your own machine – like I do – you can continue to be a patient at an NHS sleep medicine department if they are satisfied that the machine you are using is one they can approve of. (And if you bought a PR Dreamstation Auto it would be.)

AND as an NHS patient you would still be eligible for annual follow-uo, mask spares, mask replacements, temporary loan of a machine if ever necessary, and clearance with the DVLA.

Hi thanks for info, I’ll ring them tomorrow, unfortunately though they’re not seeing anyone due to covid

[Pugsy]

Even if it is the model 460(or 461)....some of those models did have a limited trial in apap mode available.
I think listed under "auto trial" in the clinical mode setup menu area.

[Juggsy75]

But is there a reason why I’m all of a seen experiencing more central’s than last 5 years?....... I’ve always been told by hospital I have obstructive not central sleep apnea....... every time I ring them they say don’t get hung up on numbers as the machines aren’t accurate at seeing everything, but surely if I’ve jumped from a 1-2 ahi 30 day average to a 4-5 then something is wrong

[Pugsy]

It's very possible the bulk of the centrals are just a by product of the increase in the OAs and hyponeas.
The OAs/hyponeas cause crappy sleep with lots of arousals and the centrals are from arousal breathing false positives...it's entirely possible.

No way to know for sure though until you reduce the OAs/hyponeas and see how many centrals remain.
It's normal to have a few anyway.

Otherwise if we weren't seeing the OAs that might be a factor...and we saw more centrals the first usual suspect to look at would be medication side effects that might restrict respiration in some way.

It's obvious the obstructive events are a problem...they need to be dealt with no matter how many centrals you are seeing.
And it's entirely possible that if you deal with the OA stuff that you will no longer have so many centrals.

[Juggsy75]

Just a note, these are by far my worst nights, most are around the 3-4 ahi, I do notice less central’s on lower ahi noghts

[Miss Emerita]

About the question "why now?" The answer is we don't know, but we can think about some possibilities.

Over time, the tissues lining the airway can become a little droopier, which could lead to an increase in OAs and Hs.

If you've gained weight, your neck may be bigger, which might obstruct your airway a little.

Your sleep environment or habits may have changed. Different pillows? Different sleep postures (side, back)?

And the cluster of events we see make me wonder whether you are tucking your chin down toward your chest from time to time. That can constrict the airway some, making it easier for OAs and Hs to occur. One experiment you can try is to use a soft cervical collar, adjusted so that your neck will stay in an optimal position.

[Juggsy75]

It's very possible the bulk of the centrals are just a by product of the increase in the OAs and hyponeas.
The OAs/hyponeas cause crappy sleep with lots of arousals and the centrals are from arousal breathing false positives...it's entirely possible.

No way to know for sure though until you reduce the OAs/hyponeas and see how many centrals remain.
It's normal to have a few anyway.

Otherwise if we weren't seeing the OAs that might be a factor...and we saw more centrals the first usual suspect to look at would be medication side effects that might restrict respiration in some way.

It's obvious the obstructive events are a problem...they need to be dealt with no matter how many centrals you are seeing.
And it's entirely possible that if you deal with the OA stuff that you will no longer have so many centrals.

So contacted my hospital today, they want my as card to look at..... when I mentioned the central’s she said to ignore them as the machine I have dosent accurately detect them...... not sure how true this is