CPAP can I help it along?

Oh, I also got my reading down to 4.7 by the time I got up last night by wearing the mask while awake. I'm not trying to fool anyone, I would think a trained eye would spot that anyway.

Good luck.

At some point you could just bite the bullet and see what happens if you were to set the minimum to 19 and the max to 20...and sleep in whatever position you desire. You will figure out real quickly if this machine will ever work for you or not in terms of getting that AHI below 5 consistently.

Staying off one's back...easier said than done and might be a viable short term solution if you can get it done but if you want to be able to sleep in any position and you have tried minimum of 19...and the AHI still is too high then the only thing left is the bilevel machine.

Going from the 16.5 minimum to 19...might get the job done. I have seen stranger things happen so I won't say it won't/can't work for you so it's not an impossible feat but I suspect that you will need more than 20 at least some of the time.

DomP wrote: ↑

Tue Jun 12, 2018 3:53 pm

Oh, I also got my reading down to 4.7 by the time I got up last night by wearing the mask while awake. I'm not trying to fool anyone, I would think a trained eye would spot that anyway.

Yeah, they could if they looked close enough but I am betting they won't look that close. To figure out awake vs asleep takes zooming in on the flow rate and examining each breath individual and I doubt seriously that they will do that.
Not to mention that it takes a bit of special training to be able to distinguish awake breaths vs asleep breaths.
They will mainly look at the AHI and won't go any further.

Couple of things then. How do I change the min from 16.5 to 19 on my machine? I'm happy to just go for it. I've looked at my setting and only really see flex 1,2 and 3. then ramp time etc.

As you have now explained, I see your point re the close inspection of the reports. If I'm in and around 6 or below, I will use that tactic for now, but I don't want to be fooling anyone, least myself here.

Go here and request a copy of the clinical/provider manual for your machine.
You will actually get a combo manual but that's okay. The secret handshake (combination of buttons to hold) is the same for all the DreamStation machines.
https://www.apneaboard.com/adjust-cpap- ... tup-manual
How to get to the clinical setup menu where you can change things is explained in the manual.
Go ahead and get the manual ...lots of good information about the machine and what it does is in there that isn't in the user manual.

Instructions on how to request the manual via email are about 2/3 down the page.

Be careful if you wear the mask with machine on while awake...because if you do a lot of moving or tossing or turning or weird breathing the machine might flag more events instead of less. If you do it while awake make a point of nice steady even breathing with minimal movement or pauses in breathing. The machine doesn't know if you are awake or asleep it only measures air flow and sometimes if you are breathing weird while awake the machine might think you are having events and you aren't.

User manual? I just got a letter telling me when to come back, then the machine and mask in a bag with the plug!

Going for the manual now, thank you. and yes, a week or so ago I had noticed what I thought was an increase in the morning when i hadn't fallen back asleep.

I'm not going to like explaining my self medicating, but what I have learnt and your advice makes complete sense to me. That and the time between appointments make it hard to wait for them to keep creeping it up slowly. I'd rather know now that the machine isn't powerful enough so that I can explore my options at the next appointment, not have another tweak and another month on trial.

Play dumb--pretend it was a lucky accident, and you thought they did it.
Praise them excessively for hitting the nail right on the head.
Admit nothing.

The worst they can do to you for changing anything is slap your hands and tell you "don't be doing that".
You are already in auto mode and the difference really isn't all that much anyway.
It's not like you are going from 9 to 19...
Like my husband says...."always easier to ask for forgiveness than permission".

Respironics used to put user manuals in the boxes with the machines but I don't know if they still do that or maybe your supplier just removed it or something.
For sure get the manual. Some really neat stuff is in there.

Forgiveness over permission and admit nothing! hahaha

Thank you both. Still reading here. I'll get it done before I go off tonight.

oh and I think the NHS must just remove them and refurbish machines. Mine does have a clear sticker over the screen, but didn't come with a box or manual.

Am I right in thinking I'm only looking for the "Auto min" setting and taking that up to 19? I don't really want to touch anything else at this stage being new and all.

Hi DomP,

You say that "understanding everything first is key for me" - perhaps I can add to what you've already grasped.

The first thing is: you can have an up-to-90 pc blockage - that's an apnea - or you can have an up-to 50-pc blockage - that an hypopnea. Neither is good for you. And they get counted together.

Take the total number of events and divide by the hours of sleep - that's the Apnea-Hypopnea-Index, or AHI. It's the measure of how good or bad.

Sleep medicine professionals in both the UK and America have a range - 0 to 5 is 'normal'; 5 to 15 is 'mild-to-moderate'; 15 to 30 is 'moderate-to-severe'. Above 30 is severe.

You, at 85 per hour, were well into severe.

Second thing. Whenever I've talked to sleep-medicine professionals in the UK, they have been fairly relaxed about what the treatment goal is. And there is at least one professional source I found that said the goal is under 10. Unless the patient has heart disease, diabetes, high blood pressure, kidney disease, etc - in which case the target is under 5.

I'm telling you this because, lately, the idea has got around on, for example, the various UK sleep apnea forums on Facebook that the target in the NHS is under 5 - for everyone.

And I would add that you are visting an American forum here - with the national culture of ambition and improving one's self and doing better. Most of the members here, I think it's fair to say, regard under 2 as the target.

You may want to check with your consultant and/ or the specialist nurses and sleep physiologists you see at St George's what target they have in mind for you. They may well regard the drop from 85 to an average of 10 as a pretty damn good result.

And bear in mind those same professionals are willing to let UK patients with an AHI of 10 go untreated - meaning they accept it as a tolerable level - because the NICE guidelines say: NHS treatment starts at 15 and above.

(And of course, anyone in the UK who is in the mild-to-moderate category is perfectly free to fund their own CPAP treatment. All they need is some medic to sign their scrip. See more on this below. )

Third thing: the DVLA - you could do yourself a favour and search on this forum for what I've said in the past about the DVLA. (If you haven't figured it out, by now, I'm in the UK, and as a former medical journalist, I try especially to help out UK posters here.)

The fact is the DVLA does not lay down a hard number for AHI. They are satisfied if your consultant and his or her team are satisfied. (I should add that they do now seem to have a clearer sense of 'a number or numbers' wrt to hours the machine is used per night - ie, greater than 4 hours, and nightly-usage that long for more than 70 pc of nights.)

Your consultant may sign you off with an average AHI of 10 - provided you are not reporting or demonstrating episodes of falling asleep during the day.

Fourth thing. Anything Pusgy tells you is gold. In my opinion, she is easily at the emeritus-professor level when it comes to this field.

Fifth thing, this talk about possibly upgrading you to a machine which goes higher than 20cm of pressure. There are, as Pugsy sez, several made by the two main manufacturers. The thing is: will the NHS provide you with one?

They might. But a special application for funding would most probably have to be made - and as you know, money is tight.

It might be that you would choose to do what other UK people (for example, yours truly) have done - and that is: buy your own machine.

If you do, there's nothing to stop you continuing to attend your NHS sleep-medicine department as a patient. And you can thereby continue to get mask-part replacements, mask replacemements, and trials with new mask designs as they come along.

And coverage vis-a-vis the DVLA.

Anyway, this for now.

It's a good hospital, St George's. I lived in Tooting for a time. Used to jog round the common of a morning.

Best.

Yes, Auto...minimum is the one to look for that should be showing 16.5 and you want to change it to 19.
Mode...auto
minimum...19
maximum .....20
Flex...I don't know if you have this turned on or not but if you do then you have a choice 1, 2 or 3 for exhale relief. There's a slight reduction in exhale with the setting of 3 being the highest. It doesn't work out to exactly 3 cm though. The max it will actually do at that setting of 3 is 2 cm drop during exhale (and it's the drop that helps you out in terms of comfort) but you only get that 2 cm if you are a rather forceful breather. The actual amount of reduction up to that max of 2 depends on your own breathing. If you are a shallow breathing might not get as much reduction at the same setting.
What I tell people is try all settings and use the one that simply feels more natural no matter what the actual setting number.
It's more of a timing thing than actual reduction that helps.

Hi Rick, Pugsy,

Thanks for the info on DVLA, Rick. I'm a little miffed to read that because my clinician isn't willing to sign me off until I hit consist sub 5s. Quite frustrating considering there are 15ers out there with no treatment.

Managed to adjust the settings last night before bed but just as I was about to post here to your replies my MAC decided it was going to launch into a update which was going to take over an hour, So I went to bed.

On a 7 hour natural night, no forced side sleep, min set to 19. 8.2 AHI. I'm pretty sure I spent a lot of that time on my back. Before the other day I had no idea I did spend that much time on my back as it is always my intention to side sleep. So, tonight then, is about eliminating REM as the cause of my clusters by forced side sleeping by way of propping myself up somehow. I'm not sure how successful that will be if I'm honest.

Thanks for your help as always.

Rick, do you have the name of a particular machine I can look at please? Guaging prices before my appointment where I expect them to say no funding... lol