Help please.....in the UK

[Pugsy]

Let's back up and try a really limited pressure range and keep EPR off.
Set the minimum to 8 cm and the max to 9 cm.
Report back with the results along with how you slept....soundly or lots of wake ups?

It's something to try that might gives us a clue as to a way to go. No guarantees.

[Nite nite]

They say that they can’t book an appointment because they have not got the machines at the moment could September. That’s really hard to say if I was asleep as my sleep is really broken. Haven’t seen the sleep study just had a letter from hospital to confirm obstructive sleep apnoea. Sleep soundly some nights with quite a few wake ups . Have had some good nights not many thought but felt great the next day like really great .

[Julie]

Your report is yours by law - get it from your MD and post here after covering your personal info.

[Nite nite]

Ok great many thanks

[Pugsy]

It wouldn't be impossible for a sizable number of those centrals/CAs to be false positives flagged when you were awake.
If you are awake they don't count. You must be asleep for anything flagged to matter.
So go look at those videos and then look at your flow rate zoomed in.

On the Feb 17 report...I am reasonably certain that the cluster of CAs at the very beginning of your night are going to be false positives...
then you had a period of time with not much going on and then around 3:30 they really started to pick up again.
Don't know if you were having awake times at that time.

So...what you can do now to help isolate real events from false positives.
Try the settings I suggested above.
When you do wake up during the night reach over and turn the machine off and then right back on again by pushing the on/off button. This will show up as a break in therapy line to make it easy to spot know awake times. Anything flagged right before or after is most likely a false positive.
If you have trouble falling asleep...do the same thing. Like at the beginning of the night and if it takes you long to fall asleep...periodically turn the machine off and on...that way we have known awake times to help with the evaluations.

Without knowing exactly what kind of home sleep study you had and exactly what it found....impossible to know for sure if those centrals were a problem prior to starting on the machine...or not.
It's kinda important. Request a detailed report of that home sleep study so we can see if it is helpful or not.

Don't go trying to deal with the centrals with more pressure....it won't help and might make things worse.

[Nite nite]

That’s great pugsy will do many thanks for your time will come back to you

[Nite nite]

Just had a thought I have ectopic heart beats some times hence the propranolol not sure if that would have an effect at all ?

[Julie]

Pretty unlikely unless you took a lot just prior to sleep - the ectopics shouldn't be an issue either.

[Pugsy]

Unlikely that your current meds are a factor in the number of centrals.
What I was looking for was maybe the chance you were on some sort of pain medication that might suppress your respiration and that might cause the centrals.

[Nite nite]

Ok great many thanks too you both

[rick blaine]

Hi Nite nite,

While others are posting about making adjustments to treatment, this is a few points about the paperwork and the practicalities. I live in the UK.

1. Is the letter you have a copy of the one which the sleep-medicine department is obliged to send to your GP? Or is it a simpler letter sent direct to you?

If it's a letter to your GP, it will be addressed to him or her by name. As a general rule with the NHS, it's always a good idea to tick the box: "Do you want a copy of all letters?"

2. Did any other information come with the hospital letter? Such as a sheet with details of the sleep study (which is what Julie is asking about)? Or is it just the bare fact that, with an AHI of 19.8, you score higher than the NHS threshold for treatment, which is 15?

SMDs in NHS don't usually send out such detail. NHS rules do say you can ask for a print-out of your sleep study – because it comes under 'medical records'. And if you do want to see that print-out, then the person or department to contact is the one who first made the record.

In your case, that would be the hospital's sleep medicine department, and for any hospital health records, contact the records manager or patient services manager at the relevant hospital trust.

3. Does the letter you got give a date for your next appointment'? Or does it say they will write to you nearer the time?

Three years ago, and with possible sleep apnea, after you had returned the home-study kit, that next time you went along to the hospital was called 'the first treatment appointment', and was with one of the consultants from the Lung Function major department, of which the sleep-medicine unit is a sub-department.

That appointment served to welcome you, and more importantly, legally make you a patient under that consultant's care.

But with all the re-assignments of staff and jobs because of the pandemic, I don't know what the treatment 'pathway' is now. That legal acceptance may be just a formality.

4. Before the pandemic, the next 'treatment appointment' would be with one of the sleep-specialist nurses or one of the sleep-specialist physiologists. And their job was to issue you with a machine, try you out on different models of mask, and teach you enough to get started.

Now there's a rule which says: if any CPAP machine is running and pumping air into the room, all staff present have to get into full high-level PPE. So mask try-outs may not be on offer. And because of staff having been re-assigned to covid wards, the time given to each patient appointment has been cut in half, and any teaching is minimal.

5. In any event, you have already passed that stage – and I have the unwelcome task of raising one more one more thing with you.

You probably don't know this, but there are two brands of CPAP machines which have most of the market in the UK. And almost all of the sleep-medicine departments in the UK's 150 Foundation Trust Hospitals have standardised on one brand or the other. And they deal with only that brand.

The thing is, each brand has its own proprietary software. So a sleep-medicine department which has standardised on Philips Respironics machines uses PR software. And a SMD which has standardised on ResMed machines uses ResMed software. The two lots of software are neither shared nor interchangeable.

And no, NHS hospitals do not use OSCAR or SleepyHead shareware either.

Why am I telling you this?

You have already bought a machine and thus voted with your wallet. And I think that the best way forward for you is not to wait till, say, September, to find out whether the SMD you've been referred to 'is ResMed', or not.

I suggest you make a phone call in the next few days to find out.

If you and the SMD are matched, then fine. If you and they aren't, then one option is to go back to your GP and ask to be referred to another SMD within the area covered by his or her clinical commissioning group – one which 'is ResMed'. (Although that might mean more delay.)

If that doesn't work, then you might could continue as you are now – as a patient who is (a) not officially attached to any SMD, but is (b) under the loose supervision of your GP. And that can work if you are getting the kind of help you're getting here.

But that won't satisfy the DVLA. More on that later.

And the fourth possibility – of finding out in the next few days that the SMD you are currently targeted towards is standardised on Philips Respironics – and of still going along to them, in that notional September – well, that will also take another post. I'll put this up for now.

[Nite nite]

Thank you so much for your response I got hold of my sleep study report today

[Nite nite]

Unlikely that your current meds are a factor in the number of centrals.
What I was looking for was maybe the chance you were on some sort of pain medication that might suppress your respiration and that might cause the centrals.

Hi Pugsy,

Here are some links to the documents.

This is last nights (09/03) sleep:
https://gyazo.com/472aa42a6d82d99f3b0f04cc404f4f87

Limited Chanel Sleep Study Report:
https://gyazo.com/57f7f64afc29911cb00f050723757653

Neuro Portable Sample Report:
https://gyazo.com/3a64447e92a0c93288075f145db45c6a

Sleep Study Report Comments:
https://gyazo.com/89fddea5ba98a482abc83b45f1ffcee3

Thanks again. I hope these help, let me know if you need anything else.

[Nite nite]

I started using my normal mask last night p10 resmed but were I was really drawing air in it was hurting my nose I changed to my air fit p30i mask at around 01.30 am I turned the machine off 3 times to indicate that for you it was a very restless sleep hope this helps getting the report from the hospital was quite hard but got it in the end many thanks Andy

[Pugsy]

Okay....no centrals noted on the sleep report.
It also appears that this was a type 3 home sleep study and did NOT measure sleep status.

Did you wear any sort of belt or restrictive device around your chest or abdomen? Important to know so please answer.

One thing to note is that the AHI when supine (on your back) was significantly higher but apparently you didn't spend much time on your back during the sleep study.

What position are you sleeping now primarily????

Have you watched the videos here
http://freecpapadvice.com/sleepyhead-free-software
to try to figure out if the centrals (clear airway on the OSCAR reports) were real asleep flags or awake/arousal related?
This HAS to be done.

It's quite obvious that a sizable chunk of the flagged centrals are awake related.
The cluster of OAs at approx 2:15 also coincide with a break in therapy where we know you were awake.
So we can discount those.

Some house cleaning....turn off the pie chart. It doesn't help anything and prevents needed statistics from being viewed.
Also add the flow limitation graph to the graphs shown on the right.
See these examples.
viewtopic/t158560/How-to-post-images-for-review.html

So....what can be done to help you sleep better? Right now the sleep quality overall is making for a difficult evaluation because we don't know how much of that ugly mess is real asleep flagging or just a bunch of false positives from the crappy sleep quality.

I wanted to limit the max to see if by chance the pressure going up (probably from flow limitations which is why we need to see the FL graph) was causing the centrals. I don't think the centrals are related to increases in pressure.

Why such a hard time sleeping? Is this something you had prior to starting cpap? What caused you to end up getting the sleep study in the first place?
Do you have to go pee often during the night? How old are you?

Get a screen shot of last night including the flow limitation graph please.
Then tonight try these settings.
Minimum 8 cm
Max 15
and this time add in EPR at 3
Should be fairly comfortable....if you have any sort of OTC sleep aid in your house that you can safely take....take it.
Some how or other we have to get more solid blocks of sleep to evaluate.
Use the mask that you like the best and is more comfortable and stands the greatest chance of your sleeping better with it.

Right now we need to target getting some sleep first before we can really try to zero in on pressure tweaking.

At least we know that you didn't have centrals prior to starting cpap.