Please help! Newbie - big problems adapting to CPAP

Nice one thank you. As far as the clinic are concerned, you're right - better to ask forgiveness than permission, especially as I seem to be banging my head against a brick wall with them at the mo.

Ok, right I have some things to try now, and in the mean time I will also get that software & access the details of AHIs etc.

I will post back as soon as I have anything further.
As ever, I would welcome any other thoughts/experiences that might occur to anyone.
Thank you all once again.

Hello again Waynefb2002,

First, some background info. When they give you an auto-adjusting machine for one or two weeks, what they're looking for when you take it back is the pressure you were at or under for 90 per cent of the time. And that is called 'the 90 per cent pressure'.

When they give out a fixed-pressure machine, it is set to that pressure. And then, the machine can't go any lower than that - even if, for some parts of the night, you don't need that much.

Using sensors and algorithms, an auto-adjusting machine (APAP) goes up in stages to the pressure that's needed. And when that need passes, it comes down again. Which makes for more comfort, as well as sleep-enhancing effectiveness.

In my case, for example, when the pressure gets up to 16 or 17 cm, it wakes me up. You could say I'm 'pressure sensitive'. By and large, my auto-adjusting machine keeps me away from that.

You are unusual in that your 90 per cent level is also the maximum that the machine you've been issued with can go to. (Its 'wide open' range is from 4 cm to 20 cm.)

Now, the next machine up from an APAP is a bi-level. This is the kind of machine which is built to deliver high pressures when you breathe in, and then let them drop by as much as 6 cm of pressure when you breathe out. It's quite a clever piece of enginering, actually - which is why it costs a bit more.

Both of the two the main manufacturers - Philips Respironics and ResMed - make bi-level models that go up as far as 25 cm of pressure. And Resmed make one that goes up as far as 30 cm.

It may be that a bi-level is what you need - both for clinical effectiveness, and for comfort.

So ... some options (and please read all the way to the end. I aim to give a rounded picture.)

A1. You can buy a brand new bi-level from the UK base of either of the two main manufacturers for something like £900 to £1,000.

There is no VAT, because it's a necessary medical device. And a new machine should be good for at least 12,000 hours - which is five-plus years, at six hours use a night.

A2. You can buy a second-hand bi-level machine on the UK second-hand market - for a good bit less. But obviously such a machine would already have some hours on it. And there aren't that many of them 'on the market' because there are fewer new ones sold (in the UK) in the first place. So you might have to do a bit of hunting to get one.

A3. You can buy a second-hand bi-level machine from a professional re-seller in the US - and will usually get a much better price than in the UK second-hand market, because - by dint of drawing from a bigger user base - there are more of such machines to be had.

And if both the seller and the buyer approach UK customs in a sensible fashion, duty can be minimised.

A4. Even if you did buy your own machine, you can continue to be an NHS patient and attend the NHS sleep medicine department - for monitoring, for mask replacement, and to comply with submission of reports to the DVLA.

In a sense, you can have the best of both worlds. It's what I do, for example.

B1. If, on your existing treatment, your numbers are good but not great, and you still aren't getting enough rest, you could make the case to your consultant that yours is an unusual case, and ask: might I be eligible for being prescribed a bi-level machine?

One way to establish whether you might benefit from one is if the hospital were to repeat its 'pressure-finding' study by having you stay overnight at the hospital in what's sometimes called 'the sleep lab'. There, the technicians can find out if you need to go even higher than 20 cm. And they can also 'switch in' that greater expiratory relief and see what effect that has on you.

(In the US, this overnight-in-a-facility pressure-finding exercise is called 'performing a titration' or sometimes just 'a titration', and it's quite common. Whereas in the UK, only 10 per cent of sleep apnea cases are assessed this way. The ones that are more severe, more complicated, or more problematic in terms of management. Ie, like yours.)

B2. There are other arguments in favour of a bi-level machine - fewer side effects (such as swallowing air, or pain in the eustacian tubes), or if they are present, they are present to a lesser degree. But the main thing is: a better quality of sleep.

The road to this second option is through your consultant. As I said before, he or she is the one who would have to make the individual funding request. So I agree with Pugsy. Before spending your money, let's see if we can gather enough information to make a good case.

Regards,

Hey Rick...this OP has the Elite...not the AutoSet and the 4 to 20 thing is nothing more than ramp for 10 minutes starting at 4 cm.
He doesn't have a range at all once ramp is over with.

I don't know if we can make this machine work for him or not. It will take a miracle (my gut tells me) but it's worth maybe trying something to see if we can get that elusive miracle. It sure won't happen if we don't at least try. It's a long shot but any shot is worth taking in this situation.

If we can't....for sure he needs a bilevel of some sort and I would of course prefer auto bilevel because there might be times in the night where pressures of 20 or more aren't needed.

Thanks again folks - I do appreciate all your input & expertise.

My machine does have the Expiratory Pressure Relief thingy - that was set to 'ramp only' but now is 'on'. (As far as the clinic is concerned, some elves must have changed it.....it wasn't me. )
Does this EPR function make the machine more similar to a bi-level?

Anyway, the elves have also changed the 'ramp' function to auto, so it stays on low pressure until I'm asleep.
Also, 'essentials' changed to 'plus' so I can easily see AHI report.

I also spent some time refitting my mask so it is now nowhere near as tight - more hovercraft, less 'mashed'!

So, I will try it tonight and hope for the best. My job right now is to try not to think about too much & get stressed. That would be a sure fire way not to sleep well!

Provided I can still see straight, I will report back tomorrow! (I haven't forgotten about the sleepyhead software either & will try to sort that out asap.)

Fingers crossed!

Hi,
I used the machine last night. I didn't get to sleep properly till after 6am, partly anxiety about using the machine but I do have 'delayed sleep phase syndrome' anyway so unfortunately that's not unusual.

However, I did get to sleep and slept soundly for many hours.
Actually, I did feel a bit better than I usually do with the machine. Still tired, but not as bad, but getting tired again now.
The only strange thing is that my hearing has gone a bit weird - like pressure in my ears as when climbing in an aeroplane, or swimming underwater. Don't know if that's a relevant 'clue' or not. Just thought I'd mention it.

But, the important thing unfortunately is that the AHI hasn't altered significantly.

I am not brilliant with computers so please bear with me, but thanks to your tutorials, I installed sleepyhead and downloaded the data from the SD card.
(I'm a bit anxious that the data include a log of prescription changes so the clinic will see that it's been altered. I will just have to 'fess up' at some point!)

I hope I have organised the graphs as you need them and taken the relevant screenshots. I have included today's data and two from February for comparison.

I look forward to your interpretations and suggestions.

Best wishes
Wayne

Can you get me a screen shot of that "change in prescription" report along with the exact date when you started the therapy with this particular machine?

Do you sleep in any one position for the most part and if so what position or do you change positions often?

Are you having much nasal congestion? If so is this normal for you or new starting after cpap therapy?

The ear pressure thing can be from the cpap pressure...so do what you can to reduce the annoyance.
Just do what you do when in a plane or whatever and the altitude changes. I yawn and swallow...others chew gum or whatever.
Hopefully it will reduce with time and be less annoying. If not or it gets worse and you start having dizziness or ear pain...see a doctor.

1. There are websites aimed at the profession which say that the target with sleep apnea treatment is to have an AHI under 10 - unless there are also present conditions such as hypertension, heart disease, diabetes, and so on. In which case, the target is under 5.

I mention this because we don't know what target your medical team is working to. (Have they ever said? Or have they just said that they are 'satisfied' with these numbers?)

Getting to under 5 brings the sleep apnea patient back to what's categorised as 'normal'. And from what I can gather, many UK clinicians are more than happy when their patients achieve that.

By way of contrast, most experienced members of this forum go further, and say under 2 is where one wants to be.

2. When there are clumps of apneas or hypopneas together, that sometimes suggests a 'positional' effect. That is, as the patient turns snd twists in their sleep, they wind up with the head and neck at some kind of angle - and the pressure is not enough to 'punch through' the spate of obstructions which ensues.

The solution for that is to either (a) increase the pressure by 1 or 2 cm, or (b) change the pillows and/or wear a soft neck-brace.

Obviously, with the setting you are already at and the machine that you've been given, increasing the pressure isn't an option for you.

3. I note that you have quite a few centrals - also coming in a bunch. What they discovered in the early days of CPAP is that - for some patients - higher pressures (in the range of 16 to 20) seemed to cause centrals - as a kind of side effect.

And that was one of the reasons for designing and making bi-level machines.

It's hard to say from only three nights' charts - but that could be what's happening here.

4. Your median resp rate is admirable - but the 95 pc figure is high (over 20 for any length of time usually needs looking at). What I am struck by is your tidal volume and your minute ventilation. I don't know how tall you are, or what build you have, but that 600+ number for a male of 'average' height and a minute ventilation of over 8 litres (as here, on each of the three nights) is something which, in my humble opinion, could be investigated.

It's one of the variables which could be covered in an overnight sleep lab.

Thanks.
Screenshot below.

I first used the machine on Fri 13th October 2017. As I mentioned in my first post though, I was only able to use it occasionally because of how it made me feel.

I do get some nasal congestion - mostly when using CPAP but a) I sometimes get it without CPAP also, and b) I don't always get nasal congestion when I do use CPAP. (If you see what I mean!)
When I've had bad nights on CPAP and I get that flu feeling, that can include some nasal congestion. It's not something that has bothered me too much though.

I sleep on my back almost exclusively. Very occasionally I sleep on my side (eg if I have backache). Sleeping on my side tends to dislodge the mask if I'm using CPAP.
Once I'm asleep, I seem to remain almost entirely motionless until I wake up - often 10hrs later. It's quite freaky actually!

Thinking on the bright side for a moment, my experience last night (after the various adjustments) wasn't too bad. I think maybe I could use it nightly if that experience is repeated.
My AHI is almost in the normal range - if I could somehow get it to 5, then presumably all would be ok.
Even with an AHI of 7 or 8, would that be considered as 'symptoms controlled' for the purposes of medical exams, driving etc??
Thanks.
Wayne

Haha Rick - you telepathied me! Our posts crossed in cyberspace. yes, I wonder what target I need to achieve. Using it every night is one target but I don't know what 'the they' need my ahi to be.

I'm afraid you kinda lost me in your last paragraph there - I'm not sure what the flow rates etc are all about.
If there's some info somewhere I could read, I would be glad if u could point me towards it, to save you having to explain it....presumably for the umpteenth time!

I'm quite happy to post more screen caps if you like - I didn't want to clog up the site with too many, but that'd be no problem.
I have to go eat then get some sleep so I can do my appointments tomorrow but I will check back tomorrow.
Cheers,
Wayne

With regard to the DVLA, the short answer is: there isn't an Agency-laid-down number for AHI.

The Agency's guidelines say you get your licence back "when the condition is controlled, sleepiness is improved, and treatment is complied with."

Unfortunately, the Agency gives no hard definitions of what those words mean.

In practice, "controlled" seems to revolve around the idea of relative improvement. Ie, if the result of the initial sleep study is 'severe' (an AHI of 30 and above) then the qualifying index is an AHI of under 10. If the result of the initial sleep study is 'moderate-to-severe' (15 to 30) then the target becomes under 5.

"Sleepiness is improved" - ostensibly, this refers to a reduction in the score on the Epworth Sleepiness Scale (which notionally the patient is asked to fill in on their first visit, and then repeat on each follow-up visit). But I have a hunch that sleep-service staff also rate this by the general look of you.

As to "complied with" - the idea has got about recently in UK sleep apnea groups that this is to be assessed by adopting the framework that American health insurers use - which is 'at least four hours a night of use for a night to count, and 70 per cent of such nights in a time period'. But AFAIK, the Agency has never said anything like this. The message to the profession is: that consultants are to use their clinical experience and judgement.

So, how long before being signed off varies. With a simple, straightforward case, and a patient who needs to drive for work (he was a car mechanic) the consultant was happy to sign the forms after only four weeks. Where I live, the sleep medicine department likes to see six months compliance before they give their approval.

Where you are probably lies somewhere in between.

If any patient feels the assessment is taking too long, they can always write to their consultant and ask if it might be brought forward - especially if they know from Sleepyhead that their numbers are good.

The pattern of the clusters of events (since you were already on your back we can eliminate back sleeping causing the clusters) points to REM stage sleep events. You probably need more pressure in REM and that's not unusual at all. I have the same thing. My OSA is worse in REM and I often need a lot more pressure in REM than I need in other sleep stages.

The Centrals (Clear Airway apneas) may or may not be real. Were you by chance awake or semi awake during the time frame where you see the centrals after 9:20?
If you were awake...they aren't real and can be removed mentally at least from the evaluation. We can't fix centrals with more pressure using your machine and if they aren't real their removal brings the AHI down to just a little above 5....not optimal but probably acceptable since that's probably the best we can do with this machine and if you feel good and sleep good...probably good enough.
Ideally you would need a bilevel machine that could go higher as needed...auto adjusting bilevel but probably not so easy to get one where you are at and with your financial situation.

How do you feel about adding a soft cervical collar to things and see if it helps keep the airway open a little better and maybe reduce those obstructive events (OAs and hyponeas)?
They don't cost much. Might reduce the need for the obvious more pressure.

I would keep these settings for a few nights and see if it still holds consistent with these results.
Going to have to put the centrals on the back burner for now and work on just the obstructive stuff and then see what's left in terms of the centrals.

Waynefb2002 wrote: ↑

Sun Mar 25, 2018 1:30 pm

Thank you both.
I will search for that post & play around with the mask again. To be honest tho, I'd be surprised if that was causing the extreme fatigue that follows after a night of use. At this point tho I will try anything!

I can't access any of the data from my machine. The data are beamed directly to the clinic and I'm not allowed to touch the SD card. However, the clinic said they were happy with all the data & set up. The only one that isn't happy....is me!

The machine is yours. Pull that SD card out and put it in your computer. Keep in mind that they they think an ahi under 5 is great, yet your ahi of 3 means you are being awakened 3 times an hour all night. Not really awesome yet. It may sound good on paper, but a lot of people really don't feel better until they get under 2 on a regular basis.

I am almost always under 1.5, BUT! I notice a huge difference based on how long I sleep before I wake up for the first real time. 3 or 4 hours is okay. 5 or 6 is great. 7+ is awesome!

So, I need a good AHI as well as a good solid amount of sleep in a chunk.

Post your results, and we can help you zero in on better results for you. Not just what the doctors think is good. (AHI below 5 and 4+ hours a night). But real success and comfort for you.

I also agree, the mask is probably too tight. And depending on what pressure you truly need, you might need a different machine. But we can't really know that without seeing the data.

Hello again.
I am very grateful to you all for all of this - for the first time in months I feel like I might actually be able to make some progress now.

So, Pugsy,
I think I was asleep for those centrals - I might have been subconsciously woken by noise around me, but as far as I knew, I was sleeping. So I will have to think they are real unfortunately.
I would be happy to try a cervical collar - will try anything (within reason) at this stage.
I will order one asap - is there anything I need to look for in particular?

Zoocrewphoto - I did access the SD card in the end & downloaded sleepyhead. Example screenshots posted a few posts ago in this thread above.
Best wishes
Wayne

Okay....let's worry about the centrals later if we need to. Not much we can do about them right now anyway.
Let's concentrate on what we can do with the equipment we have right now first and then see what happens.

Soft cervical collar.....over here in the US they are all over the place and relatively cheap. Places like WalMart carry them.
Plus Amazon or other similar online sellers carry them.

I have no idea what size you might need or how they are even sized for that matter. I haven't personally ever used one....I just know that sometimes they can help keep the airway open better and reduce pressure needs.

You don't want one that is really tall that makes your chin go way up in the air
Something along the lines of this maybe
https://www.amazon.com/Universal-Foam-C ... ollar&th=1

Not like this which is big and bulky and sleeping with it probably won't be all that comfortable.
https://www.amazon.com/Adjustable-Cervi ... ollar&th=1

You want something that will gently keep the chin elevated just a little bit.
Heck you might be able to make something with some rolled up towels. Doesn't have to be fancy.

Some pharmacies here in the US carry them but I have no idea what stores will carry them where you live.
I have heard of some people using one of those little neck pillows that we use when flying in an airplane but they just put it on backwards with the opening in the back. Would work if you could secure the back somehow.

I don't know if it would help you or not in terms of reducing the pressure needs but it's a relatively cheap and easy experiment to try.

That's great, thank you. I will order one now.