Help interpreting Oscar data - still tired....in the UK

Hello, I have been using a Resmed Airsense 10 for a couple of months now. I'm not really finding that it has made much difference to my unrefreshing sleep/daytime tiredness even though my AHI results are great and almost entirely below 1.

I am due a further sleep study to see if restless legs/PLMD may be causing or contributing to my unrefreshing sleep/daytime tiredness.

I would be very grateful if anyone could have a look at my results and give any views.

Hi - the first thing I'd do is raise your min. setting to e.g. 6 or 7 for a few nights and see if it helps (4 is close to useless for most), then come back to this thread and let us know how it's going.

Julie wrote: ↑

Fri Dec 04, 2020 10:45 am

Hi - the first thing I'd do is raise your min. setting to e.g. 6 or 7 for a few nights and see if it helps (4 is close to useless for most), then come back to this thread and let us know how it's going.

Thanks for your reply. I was given this by my hospital so they are in charge of the pressure, but I can try putting in a request. Will they likely say that because my AHI is so low (after using the Airsense) there is no need to increase the min pressure?

I agree with Julie.

Getting the comfort benefits of EPR might help you sleep more restfully. At your present settings, you're not getting that. With EPR of 3, which is already your setting, your minimum needs to be at least 7, since 4 is the lowest the machine will go.

You can change the pressures yourself if you feel OK about doing that. Just select Settings on your machine, then press and hold the round button and the home button at the same time until the clinician's menu appears. Find pressure, adjust, and press the round button to save your adjustment. Then exit the clinical menu.

A few other things: do try getting a little more sleep. Some people aren't going to feel rested without at lest 8 hours, and you might be one of them. It's worth the experiment to see. And do you usually go to bed at around 2 a.m.? Is that preference, or shift work? Ideally you could go to bed earlier so you'd get less disturbance by light after dawn.

Miss Emerita wrote: ↑

Fri Dec 04, 2020 11:14 am

I agree with Julie.

Getting the comfort benefits of EPR might help you sleep more restfully. At your present settings, you're not getting that. With EPR of 3, which is already your setting, your minimum needs to be at least 7, since 4 is the lowest the machine will go.

You can change the pressures yourself if you feel OK about doing that. Just select Settings on your machine, then press and hold the round button and the home button at the same time until the clinician's menu appears. Find pressure, adjust, and press the round button to save your adjustment. Then exit the clinical menu.

A few other things: do try getting a little more sleep. Some people aren't going to feel rested without at lest 8 hours, and you might be one of them. It's worth the experiment to see. And do you usually go to bed at around 2 a.m.? Is that preference, or shift work? Ideally you could go to bed earlier so you'd get less disturbance by light after dawn.

Sorry - as someone fairly new to this, am I not getting sufficiently restful sleep because my EPR is so high and it's impacting on the effectiveness of my pressure, given that my pressure will be on a default of 4? If the AHI is so low is it that the pressure is not comfortable which may be affecting my sleep rather than events?

I aim for 8+ hours - sometimes my work means I have to work a bit late and don't go to bed as earlier as I would like (I have black-out curtains which help). I have found that even with 9 or 10 hours on the Airsense I still have terrible daytime tiredness.

Thanks

Where are you located?

Pugsy wrote: ↑

Fri Dec 04, 2020 11:32 am

Where are you located?

UK

Pugsy wrote: ↑

Fri Dec 04, 2020 11:32 am

Where are you located?

profile shows UK.

zonker wrote: ↑

Fri Dec 04, 2020 11:34 am

Pugsy wrote: ↑

Fri Dec 04, 2020 11:32 am

Where are you located?

profile shows UK.

Didn't see it there when I posted. Maybe added later or I just missed it.

I have added the UK to the topic line to get the attention of rickblaine.
The UK health care system does things differently and our normal USA based advice sometimes isn't going to be met with positive thoughts.

"As someone fairly new to this, am I not getting sufficiently restful sleep because my EPR is so high and it's impacting on the effectiveness of my pressure, given that my pressure will be on a default of 4? If the AHI is so low is it that the pressure is not comfortable which may be affecting my sleep rather than events?"

So many acronyms! Your AHI is your apnea/hypopnea index. It's how many apneas and hypopneas you have per hour, averaged over the night. You want that number to be nice and low, and you're is excellent.

EPR is expiratory pressure relief. It is a setting that reduces the pressure when you exhale by a set amount (1, 2, or 3). You have your EPR set at 3, but you almost never get the benefit of it, because the lowest the machine can go is 4; it can't drop below that when you exhale.

Pugsy makes an excellent point. You may face more blow-back in the UK for changing your pressure settings yourself than you would in the US. So unless Rick Blaine advises otherwise, make the request to your hospital. I'd suggest you tell them you are seeing no improvement during the day and you would like to try getting the benefits of your setting of EPR = 3, since that may allow you to sleep more comfortably. You might also say, if it's true, that you feel somewhat air-starved at the minimum of 4.

Miss Emerita wrote: ↑

Fri Dec 04, 2020 11:47 am

"As someone fairly new to this, am I not getting sufficiently restful sleep because my EPR is so high and it's impacting on the effectiveness of my pressure, given that my pressure will be on a default of 4? If the AHI is so low is it that the pressure is not comfortable which may be affecting my sleep rather than events?"

So many acronyms! Your AHI is your apnea/hypopnea index. It's how many apneas and hypopneas you have per hour, averaged over the night. You want that number to be nice and low, and you're is excellent.

EPR is expiratory pressure relief. It is a setting that reduces the pressure when you exhale by a set amount (1, 2, or 3). You have your EPR set at 3, but you almost never get the benefit of it, because the lowest the machine can go is 4; it can't drop below that when you exhale.

Pugsy makes an excellent point. You may face more blow-back in the UK for changing your pressure settings yourself than you would in the US. So unless Rick Blaine advises otherwise, make the request to your hospital. I'd suggest you tell them you are seeing no improvement during the day and you would like to try getting the benefits of your setting of EPR = 3, since that may allow you to sleep more comfortably. You might also say, if it's true, that you feel somewhat air-starved at the minimum of 4.

Thanks for your advice. Could it be that increasing from 4 to 7 min pressure could make the difference in terms of daytime tiredness (I appreciate there are no guarantees with this sort of thing)?

Hi lokiaegis,

1. I agree that your numbers are good, great even. But they do raise the question: if you can get results like this with the machine at only 4 cm – the minimum when it leaves the factory – and if the pressure only goes up to 5 cm a few times (as per your chart), do you really have sleep apnea?

It's not impossible to have sleep apnea which is greatly alleviated by a pressure of 4 or 5 cm. But it is unusual.

2. When you did the sleep-study – was it the at-home kind? With the thing on your finger, the tube round your chest, and the double-pronged thing in your nostrils – all three plugged into the little grey box? And what was your untreated AHI? What was the number?

Usually, in the NHS, it has to be 15 or above before you get treatment. Did they ever tell you?

Or: did you have the kind of sleep-study where you had an over-night stay at the hospital, in what's sometimes called the 'sleep lab', and they wired you up 16 ways from Sunday – with: the three things mentioned above plus ECG wires on the chest and leg (heart) plus EKG wires on the scalp (brain activity) plus sensors for limb movement? Oh, and a video camera.

The latter is rare in the NHS. Fewer than 10 per cent of sleep investigations are done that way. Only the more unusual cases.

That may be what they want you to do next. Have they sent you a letter mentioning an over-night stay?

3. Following on from #1 and #2 – if, perhaps, you don't have sleep apnea, and if you aren't rested, you might have some other condition.

Restless Leg Movement, which you mention, is one. But there are others.

4. By the way: does the sleep-medicine department already know how you've been doing?

Some ResMed AutoSet 10 machines have a chip in them that allows the machine to 'phone home' to the hospital, using the mobile-phone network, to tell them how you've been doing.

And even for them to 'phone' your machine and remotely change pressures, if needed.

Is the unit they issued you with doing that? If you look at the dial on the machine, the word 'Air' will be lit up – usually in green – if the chip is active.

5. I get the sense that the SMD must have been busy when they handed out the machine and mask, because they don't seem to have given you The Talk about pressures, viz:

– the maximum, chosen because ...
– the minimum, chosen because ...
– the optional 'reduction in breathing out' pressure (a 'comfort' feature);
– the 'gradual start at a low pressure before building up to the effective pressure – so you can get off to sleep first' pressure – which is also optional, and is another comfort feature.

What isn't raised during the appointment is the topic of patient changing either the first or the second of these. Because, mostly, the doctors and nurses and sleep physiologists in an NHS clinic don't approve of that.

They don't approve of that for two reasons. One is, they worry that you might come to harm if you set your pressures – even though, with these home machines, and with patients who are otherwise well, that is unlikely.

The second reason is that, under UK law, your doctors and nurses have a 'duty of care' towards you. And they worry that letting you change the pressures – without you knowing what you are doing, for example – would be a breach of that duty. For which they could get fired. And possibly prosecuted.

Now, I can't interfere with your doctors' and nurses' duty of care. Meaning that I, while in the UK, can't tell you what to do with regard to settings.

I can tell you that I do know what I'm doing when I adjust my machine. And the nurses I speak to at my annual follow ups, they know that I know what I'm doing. And my numbers are good .... And they seem satisfied that I won't come to harm ....

6. Anyway, right now, I don't think changing the pressure is the issue. The pressure you are at seems to be working – as far as a low AHI goes. It's that you don't feel rested.

Sounds to me like: even if the answer to #1 above is 'yes', further investigation is needed.

My opinion – for what it's worth – is: continue using the machine. Get the second sleep-study done. And let your doctors and nurses decide the next step.

Rick, do you think there's some chance lokiaegis would sleep more comfortably if some EPR could be made possible by raising the minimum? That was the line of thought I was pursuing.

Lokiaegis, you're in terrific hands with Rick.

Thank you for your response. Please see my responses:

- My home sleep study was WatchPAT and my result was around 14/15 (from memory), so in the higher end of mild / the lower end of moderate

- Yes I cannot understand my results: very good, only goes up to 5 cm a few times, yet it is having no impact on noticeable symptoms. I did think when I started that going from 14/15 during the home study to no more than 1 on the Airsense must be doing something noticeable for me, but it is sadly not

- Yes I am due an overnight study because it's not improving my symptoms and because my WatchPAT study identified possible RLS/PLMD

- What other conditions other than RLS/PLMD could cause this - I have tried a lot of blood tests such as vitamin D, anaemia - all normal. I think it must be sleep-related?

- My Airsense link works and the hospital are able to monitor my progress/change settings

- I will continue using the machine but feel pretty desperate about the daytime tiredness - it was so disappointing as I thought this treatment would finally be the solution (although I appreciate some people report that it takes a long time for symptoms to improve and maybe I need to wait, but in many ways it feels like my tiredness is getting worse)

rick blaine wrote: ↑

Fri Dec 04, 2020 5:53 pm

Hi lokiaegis,

...

Hello again, lokiaegis.

This will be a bit off the top of my head, and a list. It's the middle of the night here now, and I need to go to bed.

If the study with WatchPat showed apneas, that is usually to be relied on. But some of what it indicates is inferential. The three-channel 'kit' I referred to shows actual effort to breathe and actual air-flow, so it 'says' things with greater certainty.

But leaving that aside, if you have an O2 reduction 15 times an hour, that qualifies for NHS treatment.

And the treatment, when effective, keeps the airway open – so there's fewer dips in O2.

But for some people, that isn't the same as getting to be rested.

For some people, it can take three months before the 'getting rested' starts to happen. And for a few people it takes even longer.

Then there's the following pattern that some people go through. They start on CPAP treatment, and there's relief – sometimes great relief – because the 'alarms and excursions' over near-suffocation and low O2 have ended. But then after a while, the person starts to feel the underlying tiredness which has built up over time. And they have to work through that.

It's a bit like the concept of 'sleep debt' – which in non-OSA people, is said to build up Monday to Friday. And that 'debt' needs to be 'paid back' via extra sleeping on Saturday and Sunday. The underlying tiredness of OSA, if present, is like that – but takes place over a longer period because the 'debt' is greater.

There is also RLS – which is physical. And there's also things like night terrors and anxiety, which are more mental.

RLS is usually treated with drugs. Check with K Teague on this forum. She's a great resource.

There are promising new treatments for anxiety and fears such as Havening which are different from most forms of psychotherapy in that it gets its results quickly – ie, in a few sessions. At the moment, Havening is not available thru the NHS; you have to find a 'private' provider.

There's also the possibility that, in addition to the tiredness which goes with sleep-disturbance (which usually happens at night-time), there are a few 'non-organic' breathing disorders which happen while awake, and usually in the daytime.

The most common of these, according to Dr Claude Lum, is hyper-ventilation syndrome, or HVS.

The remedy for that is doing breathing exercises every day, until the healthier breathing patterns become a habit. It's better if you are taught these exercises by, and are supervised in doing them by, a trained respiratory therapist. That is available in the NHS. Your GP can refer you.

And, of course it makes sense to exclude all the major organic possibilities first before turning to HVS.

What I'm saying is: (1) there is often a long-term pattern of recovery wrt sleep apnea. So, as well as the need to fine tune the system wrt masks and pressures – the physical stuff – there's the notion of 'sticking with it' – which is a mental process.

And (2) It's a mistake sometimes to think that sleep apnea is the only cause for tiredness.

In your case, if there are indications that RLS may be present, that should be investigated.