have won 2 wars with hospitals: & now I need some APAP-help

G'day to you all

On my apnea-journey I discovered I live in a country that claims to have 'top notch medical care', yet, in the area of apnea, obviously has set standards for incompetence and corruption

The short story:
- Hospital 1: gave me an antique machine that sounded like a vacuum cleaner, had only 2 (cheap...) masks that leaked their way all the way to Mars, and told me to 'live with it';
- Hospital 2: gave me the same antique machine, had 5 instead of 2 masks (but still the cheap leaking garbage), told me to 'live with it' and when I started to to complain about the garbage got insulted because 'I didn't show any respect for their status of being a well established sleeping expertise center' (ouch, that hurt - them ).

So I moved on and finally found a superb great doctor. One that is extremely concerned with patient wellbeing, and literally told me 'any vendor can sell us any stuff they have, but when my patients complain I'll throw 'm out without even giving it second thought'. I feel a doctor like this is rare, very, very, rare.

Having heard about my previous experiences he gave me a brand new S9 Elite with heater 'just to try'. Not even requiring me to sign whatever document, he simply said 'take it, try it, and report back if it works'. After having tested it for 2 weeks (it is silent(!) Now I could actually go try to sleep, which wasn't possible with the antique vacuum cleaner machines due to their noise) I revisited, and told him my masks (which I had kept from the previous 2 hospitals) were still junk. I told him I was told for months already on several fora to try the Resmed Mirage Activa, but had been refused that by the previous two hospitals 'because these masks were too expensive'. He reached into his closet, took out 2 Mirages (different sizes) and with a smile on his face said 'go away, I am busy; try them, and report back in two weeks'. They indeed were a huge step forward. On daily checking the Resscan results, I noticed still quite some apneas. I contacted him, and suggested an APAP instead of the CPAP. He told me 'I can't prescribe these, as these aren't allowed by the insurance companies in our country, so that might be a problem --- But I happen to have one at home which a previous patient who has passed away gave to me to do good with. You are welcome to try this for 2 weeks at home. If this is the final solution you will have to buy it yourself, but at least you can try it, come and get it, and report back in two weeks'.

Like I said, to me this is a warm bath, a doctor like that...(And I still haven't signed any paper, talking about a doctor who is not in it for the money but actually deeply cares about patients).

So, I picked it up yesterday, the S9 Autoset. And now comes the problem. Whereas this doctor is a skilled and experienced physician (I guess he is in his early sixties), and is certified to treat apnea, he is working in a rather small hospital, where he runs everything by himself (since management found they needed that section in the hospital as well). However, he actually is a neurologist, so apnea is something he is doing 'on the side'. And given that this man understandably drowns in his work, he has more or less taken a short cut: he gives people a class-A machine (Resmed) with good masks, and periodically reviews the Resscan software for the AHI/day of every patient. But that's it. So, when I went to get the Autoset yesterday, he told me 'I have no experience with Autoset since we aren't allowed to prescribe them, so you would need to find out by yourself how to set the pressure'. Given all that he has done for me sofar, and taking into account his busy schedule, I gladly took that for granted.

And this is why I now turn to you all kind people to ask for advise; how do I need to set the Autoset up? I know how to reach the setup menu, that is not the problem, the problem is: what settings?

My initially prescribed fixed pressure has been 10 (hospital 2), but, there's a catch: it turns out this 'extremely well established sleeping center' (muhahahaha) has made a complete mess of it. After 4 months of using the antique crap (with the pressure 10, while trying to do anything that came close to sleeping) and returning the machine to hospital 2, I finally got to see my titration study. And the responsible physician who signed of the pressure of 10, actually also appeared to see it for the first time ('we're so busy here, I can't look at every sleep study that happens here, I have trust the analysts'...), after his first look sighing 'how can anybody have described a pressure of 10, you have only slept for 30 minutes!'...(!) Well, yes, 'doctor', that was one of my complaints which you back then countered by pointing out I didn't respect your 'well established sleeping center', cough, cough...



Anyway, the final thing hence is: I have an Autoset, we have had a pressure of 10 on the basis of a complete bullshit titration night so we don't know if 10 is correct to begin with. On the other hand, I can definitely confirm that, after now for the first time in 6 months now having actually been able to sleep with a machine for the last month, I do feel better. During the last month of using my S9 Elite, I have gradually been feeling less tired, my concentration has starting to come back, and so on. So 10 might not be completely wrong, it appears it is doing something for me (although I am still on the journey, I'm not there yet).

So, my question is: what should I do in setting up the APAP? Min/max pressure? I do understand that a low min pressure has things going for it; it seems the lower the pressure the better, in general, so that would advocate setting min pressure low. On the other hand, that would mean a big 'sudden' increase if it is automatically increasing pressure to, for example, 10 or 12, so that might be the draw back.

So, what should I do?

And one final question: am I in risk of using APAP? I ask this because APAP appears not to be used in central apneas, and the Resscan software shows events that it classifies as 'central apnea'. Something that wasn't noticed during the two sleep studies, and, more over, something that is not completely clear, as the neurologist (doctor #3, the good doctor) says central apneas can only be determined by sensors on your chest that monitor your chest movement while breathing. Something the S9 obviously doesn't do, but, then again, something that Resmed has a reply to (which I still need to study, since this is all complex stuff for me).

Thank you very, very, very, much for any helpful replies. I thought I'd share with you that after having fought two wars I finally am on my way forward after having found this great doctor, so don't give up and we are bound to win in the end, but for this final part I would really appreciate your help

Thank you & bye,

How was your AHI with the Elite at 10 cm? Okay but not quite to your liking?
Did it flag many centrals or was it mainly obstructive apneas and hyponeas that got flagged?
Unless you are having a lot of centrals it would be relatively rare for any pressure changes made by the APAP to be a problem...easily spotted if it happens. Increased pressure doesn't mean that everyone will have centrals pop up due to pressure. I use an auto adjusting machine and see pressures to 18 cm (10 minimum) without any evidence of pressure increases triggering centrals. I think I read a while back that only 10 to 15 % of the people will have pressure induced centrals and when they do it doesn't matter what the pressure might be. Some can have them triggered at really low pressures.

So what to set the machine for? I would start with a modest range near your current cpap 10 cm...see where it wants to go.
Minimum is important though....gotta give the machine a good enough head start so it can respond in a timely manner.
I would try minimum 8 cm and maximum of 15 cm. If your AHI is still higher than you want AND it is mostly obstructive in nature...then increase the minimum to 9....etc. If your AHI is predominately central then we don't increase the pressure and if we see centrals along with any increase in pressure then we reduce the max.
Upper limit maximum to be evaluated only if your machine maxes out. The machine won't go where it doesn't think it needs to go so that maximum is just a number until you see it being reached.
The maximum setting is a moot point if it is never reached. It doesn't do anything to the response time if it is never reached.
Now some people find that the pressure variations associated with APAP mode is a disruptive influence to their overall sleep...then we really tighten the range to limit the disruptions. Sometimes we have to compromise a bit if a wide range is needed but that range is disruptive.

Whenever making a change.....don't make a change every night....give the change a few nights to see if it is staying true to the trend. We can have bad nights no matter what the settings.
I don't know if 8 cm is going to be adequate minimum but it might work just fine and you might need a little more but have to start somewhere. If you use that minimum and AHI is "okay" give it a few nights...if AHI is horrible (and not centrals) then increase to 9 sooner.

Agreed. Since your real pressure requirements are not known with any certainty, expect that a pressure of 10 - 11 cm, which is the mean level of pressure required of patients who have undergone titration studies (so says my doc), is a good assumption. Lowering the minimum pressure to 8 makes sense, but I don't think that with a machine like an S9 you need to set an upper limit. I haven't heard of an S9 running away with a user. Other older machines will, on occasion, but I've not heard that about an S9.

Get a few nights of data and see how things go. Several nights with ResScan data would pretty well clinch your pressure needs without the need to have another titration study.

Slartybartfast wrote:Lowering the minimum pressure to 8 makes sense, but I don't think that with a machine like an S9 you need to set an upper limit. I haven't heard of an S9 running away with a user. Other older machines will, on occasion, but I've not heard that about an S9.

I haven't heard of it either and even with the older machines (Respironics for sure would sometimes have leak caused runaways) it isn't nearly the problem that people think it is.
Maximum pressure setting is a non issue unless the max ceiling is being hit consistently.
I don't understand the fear of allowing the max to be more wide open. It doesn't matter what the max setting is unless it is being reached and if it is being reached then there is a reason why it wanted to go there in the first place.
Heck, if a machine would go to 50 and we never went above 12 cm it becomes a moot point what the maximum setting was.
Now with the new machines that don't chase leaks so much... pretty much a non issue because that was the main drawback with older APAPs.

I try to keep my top and bottom numbers fairly close together, 4 cm at the moment.
--(I have had a couple runaways, when the top end was too high.--woke me up!)
I like to keep my AHI below 2, with centrals at or below 5% of the AHI..
Autoset is a great machine--so quiet, I can hear my tinnitus.
Welcome.

Hi - having a few centrals on your study is normal... having a lot of them every night at home is not, so I wouldn't worry if all you see is a few e.g. >5 sometimes, vs <15++ routinely. If you do set your minimum pressure arbitrarily high (e.g. above 15) without any proof that you need it, then you might be asking for trouble, but if you consistently see there's a need to set it that high, you might have to look at a different type of machine, a bipap, or ASV, to address centrals, but it's fairly unlikely to happen.

hton wrote:And one final question: am I in risk of using APAP? I ask this because APAP appears not to be used in central apneas, and the Resscan software shows events that it classifies as 'central apnea'. Something that wasn't noticed during the two sleep studies, and, more over, something that is not completely clear, as the neurologist (doctor #3, the good doctor) says central apneas can only be determined by sensors on your chest that monitor your chest movement while breathing. Something the S9 obviously doesn't do, but, then again, something that Resmed has a reply to (which I still need to study, since this is all complex stuff for me).

Re: Fear of central apnea.

The main thing to realize about central apneas is that they're no more harmful than obstructive apneas, they're just harder to eliminate.

Obstructive apneas tend to go away with higher pressure, while centrals tend to get worse.

Re: CPAP machines can't detect centrals.

The S9 AutoSet machine will detect that you had an apnea. It will attempt to determine if it was central or obstructive. Some people are skeptical about how it distinguishes between central and obstructive, but even if it gets it wrong, it will report some kind of apnea. ResMed tries really hard to get it "right."

i.e. If you're having central apneas, the machine won't tell you that you're not having apneas.

Re: APAP is not appropriate for people with centrals.

The concern is that centrals may increase with pressure. Your body doesn't care whether the pressure is "auto" or manual.

If centrals are a problem, your doctor should set the maximum APAP pressure to a level where centrals don't occur. If, for instance, you don't have centrals at manual CPAP at a pressure of 14, you shouldn't get centrals at an APAP setting of 8-14.

Too many people think that "APAP" means you leave it wide open and set it at 4-20 pressure range. That's not usually the right way to do it long term.

Pugsy wrote:I don't understand the fear of allowing the max to be more wide open. It doesn't matter what the max setting is unless it is being reached and if it is being reached then there is a reason why it wanted to go there in the first place.

That's true for those of us who monitor our data.

There's some risk for those who don't monitor their data. Suppose Joe needs 8 cm pressure normally and sets his CPAP at 6-20. He gets older and fatter and his obstructive apnea gets worse and his auto pressure goes to 14. Joe starts having really bad centrals at 14 that he didn't have at 8.

Lots of people get their CPAP and never look at the results or have followup doctor visits after the initial tweaking.

Of course, in this case, if Joe had his maximum pressure limited to 10 or had a manual CPAP at 8, he'd be suffering from obstructive apnea instead of central apneas, so it's not really a clear cut case that he's worse off.

If you do a search here for "self titration" you should find some good suggestions on how to do it.

"Centrals" are really "clear airway apneas"--meaning the machine detects no breathing but a pressure pulse doesn't find an obstruction. These often occur during transitional sleep--as you are going from waking to sleeping or sleeping to waking. Therefore, the number of CA's alone is not something to worry about, but you need to look at when they occur. If the data clearly shows a pattern of increasing CA's when the pressure is higher and not in transitional sleep, and the number is significant, then you can be concerned about CA's. Otherwise, CA's are usually not a problem.

Your machine only goes to 20 cm of H2O,that's like taking a deep breath in a stiff wind. In other words, it's NOT going to hurt you unless you have a very severe and rare form of lung disease (and you'd know it if you did). It's only air, don't be afraid. The biggest danger from a CPAP machine is if you drop it on your toe!

I'm a bit surprised the doctor you saw can't figure out simple titration techniques, but I realize from your description that his time to do things like this is limited. In any case, I'd set the pressure in a narrow range, 2 below and 3 cm above your titrated pressure and see how it goes for several nights in a row. With sleepyhead data you can then adjust accordingly--if you post your data we can help.

archangle wrote: There's some risk for those who don't monitor their data. Suppose Joe needs 8 cm pressure normally and sets his CPAP at 6-20. He gets older and fatter and his obstructive apnea gets worse and his auto pressure goes to 14. Joe starts having really bad centrals at 14 that he didn't have at 8.

Yeah and if a frog had wings he wouldn't bump his butt all the time.

An APAP machine will not increase the pressure in response to what it deems is a non obstructive type of event. By design they just won't do it. So the machine won't go there if it doesn't feel the need. Now yes, a few people might have some centrals pop up with the higher pressures but if someone needs a higher pressure due to whatever unforeseen circumstances then it could happen with any increase and not just to 14...heck, some people get pressure induced centrals at 9 cm.
It doesn't have to be a high pressure..it can be any pressure. It doesn't even have to be an increase in pressure.

Just because a machine is set wide open doesn't mean that it will go there and it doesn't mean that even if it does that centrals are a foregone conclusion.

In your above example of "what ifs"....sure all that could happen but that person is screwed anyway.

If we are what iffing here.....since it doesn't have to be an increase in pressure that induces centrals and it can be any pressure (even a little old 8 cm) then all those people given brick machines would be at risk also of developing centrals.
Gosh, let's don't use the machine because it might cause centrals and I sure don't want to maybe cause centrals.

If centrals are triggered by pressure then that is a whole different can of worms but any APAP pressure increases are in response to obstructive event needs and those need to be addressed...if the byproduct happens to be the occurrence of centrals then that is a different diagnosis and whole different way to go about dealing with things.
Having a wide open APAP range has nothing to do with it. It is the obstructive event pressure needs that are the driving force with the pressure. It could easily happen with a range of 6 to 10 also.

Pugsy wrote:

archangle wrote: There's some risk for those who don't monitor their data. Suppose Joe needs 8 cm pressure normally and sets his CPAP at 6-20. He gets older and fatter and his obstructive apnea gets worse and his auto pressure goes to 14. Joe starts having really bad centrals at 14 that he didn't have at 8.

Yeah and if a frog had wings he wouldn't bump his butt all the time.

An APAP machine will not increase the pressure in response to what it deems is a non obstructive type of event. By design they just won't do it. So the machine won't go there if it doesn't feel the need. Now yes, a few people might have some centrals pop up with the higher pressures but if someone needs a higher pressure due to whatever unforeseen circumstances then it could happen with any increase and not just to 14...heck, some people get pressure induced centrals at 9 cm.
It doesn't have to be a high pressure..it can be any pressure. It doesn't even have to be an increase in pressure.

Just because a machine is set wide open doesn't mean that it will go there and it doesn't mean that even if it does that centrals are a foregone conclusion.

In your above example of "what ifs"....sure all that could happen but that person is screwed anyway.

The point is that there are valid reasons not to simply go wide open all the time. It's not just dumb doctors who are stuck in the past.

Even if you don't go wide open on the top end, APAP does still have a lot of advantages.

Your doctor or you do need to monitor your treatment over time, even if you are on APAP.

Thank you all for your replies; I will digest and process it

I followed the recommendation from Pugsy, setting it to 8-12, I never noticed anything during my first night with the Autoset. AHI appears to be 0,4, but this is an average of hours, so I wanted to review the stuff with Resscan. In there lies a problem, suddenly: Resscan doesn't work anymore ( ). I will post a new thread about it to keep matters clear, 'also for future generations' ( ).

Just a small update, it appears the Autoset indeed works better than the Elite, in my case. Having set the autoset to 5-13,2, I have had some remarkable results after four nights:
- No more being awake from itches in my nose (before the Activa mask I woke up several times a night due to leaks. I had no more leaks thanks to this great Activa mask, but now I woke up due to strong itches in my nose. My hypothesis was it had to do with the air flow (storm ) in my mask. I guess I was right. The constant pressure of 10 all night might have been irritating at points during the night which caused the itches that woke me up. Although the max pressure now is higher (it reaches 13), my guess is that because this is only during short times so it doesn't irritate so much). So: leaks gone, itches gone; well done

- AHI for four nights:
First day: 0,45 (6,5 hours sleep, 3 events)
Second day: 0,46 (6,5 hours sleep, 3 events)
Third day: 0,58 (10,5 hours sleep, 5 events)
Fourth day: 0,36 (5,5 hours sleep, 2 events).

I guess I could become a happy man

Commas for decimal points; that tickles me every time I see it.
I know we Yanks are weird about our periods, but our differences make it fun.

chunkyfrog wrote:Commas for decimal points; that tickles me every time I see it.
I know we Yanks are weird about our periods, but our differences make it fun.

Hamburgers instead of green vegetables, that tickles me everytime I see it

No, but seriously: that tickles me everytime

No, but now really seriously, especially for all Yank friends:

0.45
0.46
0.58
0.36

And I love NYC