HELP - Switched from S9 to DS and had massive attack

[chill]

So it seems like that range has been thought out by the professionals, and seems to be what I need.

You are putting way, way, way too much faith in these people, their understanding of how these machine actually work, and the accuracy of a night or two in a sleep lab.

Now obviously, the DS did not react properly within that range, because the 90% pressure showed about 7.

Which also means that 10% of the night, it was above 7.  Your starting pressure is too low for your needs.  The Respironics machines can (sort of) compensate for this incorrect setting.  The Philips machines can't (or don't depending on your point off view).

one other thing I noticed was a difference in AHI measurement between the DS and my older S9. The DS showed an AHI of around 3-3.5, where as my S9 was around 0.8-1.5. Pretty big difference.

Again, I would be willing to bet that the different lies in your starting pressure being so low.

So what will SleepyHead show that the OEM apps do not ??

Breath by breath flow rate data, snoring, flow limitations, event length, pressure changes, need I go on?  It shows what a clinician would see when evaluating your therapy.

[Sleeprider]

Sleepyhead will present you with comprehensive efficacy information, and even a breath by breath waveform that can be used to troubleshoot events. It provides comprehensive information on all the machine settings, it's pressure response, and comprehensive statistics on events, respiration, flow limitations, snores, etc. and allows for analysis of why events occur. There is simply no comparison. DreamMapper is a cursory summary, and has useful information, but no capability to correlate problems with time, pressure and other factors.

For example, what was happening at the moment before your "massive attack". What pressure was the machine at? What was your respiratory response? Why was this a problem, and how did it occur? DreamMapper won't get you that.

[PaytonA]

neils,

One thing that you need to know about the pressure adjusting algorithms for both machines. They do not increase the pressure during an apnea. So if you wake up during a long apnea and you shut the machine off or take your mask off, the machine might not increase pressure due to that apnea.

There are plenty of Sleepyhead screens  in various threads on the board. If you want to take a look you will see what Sleepyhead provides. One of the great things about Sleepyhead is the amount of data that is available in one screen image and the graphs of the date on time based graphs. Some of us are very datacentric and may feel unable to help effectively without all of the good data.

Best Regards,

PaytonA

[Mark71]

So it seems like that range has been thought out by the professionals, and seems to be what I need.

You are putting way, way, way too much faith in these people, their understanding of how these machine actually work, and the accuracy of a night or two in a sleep lab.

^^^^THIS -Times 2

[neils]

Chill,

First off thanks for the detailed reply, and I sure would not like to have an apnea mask looking like the one in your profile pic :-)

Let me step thru your comments, as some are a little disturbing, while others I have questions around.

* Putting way too much faith in these people (doctors, apnea techs)
If we cannot rely on medical professionals, and licensed doctors who specialize in their field (incl apnea) who work with sleep clinics, to guide us on what we have to do and how to use and set our machines, then God help us all. Now, I am one of those guys that do put a lot of faith in online forums for a number of topics, but in the end, we should be able to feel safely guided by the medical professionals. Having said that, I was not overly impressed with my apnea tech who setup my old and new machines, but the doctor was good and pretty much prescribed the same settings as my old machine, and he did walk me thru every detail of my sleep study, to make sure I understood the type of apnea I had, what the numbers meant, etc. So while I do not solely rely on the medical apnea experts, I sure hope we can count on them to diagnose us properly and get us the help we need. Like many of my friends tell me, as well as my wife who is a nurse, take online info with a grain of salt, as there are some who pretend to be experts but are not as qualified as those working in the field (as there are some experts who are in the field and online). You get a mix of both.

* 90% pressure not showing max pressure
Reasonable conclusion that my machine shows me a 90% pressure average and the 10% (not shown) could be much higher (or lower). Why would it not also show me the min and max pressure used, so I can see if it had to deal with a severe event, and what pressure was needed for that event. While I am thrilled to see an average of 7, I would like to see the pressure when a major event or attack or long length of no breathing happens. Hoping I might have access to that data in the SleepyHead app. Because an average is nothing more than an average, I want to see the extremes as well.

* Low starting pressure & difference in AHI analysis
Not buying this one !! First off, what does a higher starting pressure have to do with an extreme event/obstruction that is not dealt with by the machine ? I get it that milder obstructions/events might go unnoticed if the min pressure is set too low. But if you have a severe event, with long periods, shouldn't the focus be on the max pressure to open up the airway, and not min pressure ? I have read many posts talking about min pressure, and I get that it is important, but for me, in extreme conditions, I am more focused on what the machine will do at max pressure, and want to make sure that machine gets there QUICKLY to open the airway up !!

Difference in AHI readings between machines, well sadly I get that every machine is built differently. But I would expect ALL machines to read AHI the same, and give the same results +/- 10%. Machines as expensive as these should be extremely accurate in analyzing AHI. If there is no standard, then those on Resmed and those on Philips are talking different stats and language and cannot compare ACTUAL AHI, because one machine is obviously off. If my wife takes blood pressure at the clinic using several brands of sphygmomanometer, I expect the readings to be similar between equipment for patient charting, why not the same for apnea machines / AHI. Should be standard.

* SleepyHead app
I am very impressed with all the data collected by this app (which I have not tried yet), versus say DreamMapper, which is disappointing with respect to the manufacturers of these apnea machines. If the machine/mask/hose can read and store that data and it is available, then why wouldn't the manufacturer's compatible app pull that data and display it in dashboard form within their own app, why drop the data all together. Either way, I will most certainly download it and play around with it once I trade in the DS for the AS when I get back. I love to analyze data, so the more the better.

Thanks Chill for engaging in this conversation, appreciated !!!

Neil

[C0mbe]

I think what's missing from the provider comment is that managing sleep Apnea is a full time job.  Your needs can change constantly, and your results from PAP therapy greatly improve when you actively participate in therapy.  That's not to say that all sleep techs/docs are bad - mine are excellent - but they can't spend the amount of time necessary to really dial in a patients treatment.  They just can't, they don't have the time.  That's where we come in as patients and as a community.  Taking control of your therapy is important.  It can mean the difference between a decent night sleep and a great night of sleep.

On the device discussion:  the devices are all capable of treating Apnea, it's how the device arrives at providing the treatment that differs (algorithm).  PR machines are excellent at treating sleep Apnea when then are given a shorter range to work within.  Resmed are notorious for being more aggressive and therefore can provide better results with a wider pressure range.  Both are equally capable of achieving excellent AHI results, you just have to know how to tune them to get them there.  

Sadly not all doctors, or sleep techs are aware of the difference in algorithms.

[neils]

Very well said and written COmbe !!! I can agree with that ! I think the scary part for me in all this is relying on a machine to keep you from either forgetting to breath or keeping a blocked airway open, so that you do not die (worst case) or damage organs or develop other conditions. I think next time I see my family doctor, I will ask her if I can get referred to a cardiologist again (did a full exam 6 years ago). But expecting that part to be fine. Last time I saw one, the doc said there were 3 conditions for a heart problem, one was family history (none for me), poor results from a stress test (?EKG), and I forget the 3rd one. Based on passing all 3 of those conditions, I walked out of his office and never saw him again. Might be time to revisit one just in case, especially since I have put on weight lately (but actively sportive).

Great forum, great feedback, and great people.

Thanks
Neil

[C0mbe]

Very well said and written COmbe !!! I can agree with that ! I think the scary part for me in all this is relying on a machine to keep you from either forgetting to breath or keeping a blocked airway open, so that you do not die (worst case) or damage organs or develop other conditions. I think next time I see my family doctor, I will ask her if I can get referred to a cardiologist again (did a full exam 6 years ago). But expecting that part to be fine. Last time I saw one, the doc said there were 3 conditions for a heart problem, one was family history (none for me), poor results from a stress test (?EKG), and I forget the 3rd one. Based on passing all 3 of those conditions, I walked out of his office and never saw him again. Might be time to revisit one just in case, especially since I have put on weight lately (but actively sportive).

Great forum, great feedback, and great people.

Thanks
Neil

You're welcome for the response! 

As an aside, your fear is totally understandable.  That's why sleepyhead is so important - it gives patients, or the folks on this forum the insight into why your therapy is or is not working.  That in turn can be used to give you actionable solutions to problems with your therapy.   

Personally, I would trust my treatment to some of the folks that have responded in this thread and countless others on this forum.  They've helped more people than I can count, and the depth of knowledge is staggering.

As some have suggested, because a PR machine is  slower to respond (and only responds AFTER the attack), you are potentially still prone to obstructive events.  If you were to download sleepyhead and post a screenshot, it might reveal that your minimum pressures are too low, and you could make the change tonight that would result in a much better sleep!  Happened to me!  

That's not to say you don't need a pulmonologist.  I won't pretend to know anything about that field.

[neils]

I will definitely pull data via Sleepyhead and post it here in a couple of weeks, to get all of your input, to see if I can dial in the machine better than the current range they recommend of 6-16. Only thing is that based on most recommendations here, as well as a consult with another apnea tech, I think it was unanimous that I stick with Resmed, since my older S9 has been working for me over the years, and the smarter move is to upgrade to the AirSense. So I don't want to chance using the DS anymore, I have it bagged up, and when I get back from my vacay in a week, I will be going back to the clinic where I will swap machines. Once I have the newer Resmed hooked up, I will be more than grateful to come back on here and post some charts and see what you guys think of the data.

BTW, when I went to pickup my "new" machine at the clinic, I was told that a lady came in before me, and urgently needed a replacement DS since hers broke down, so they ended up giving my new machine to her. So instead, they gave me a rental machine in the meantime, and said my new one would be waiting for me when I get back. When I ran into my apnea event/attack the other night, and talked with them about doing an exchange a day later, I was told that usually that is not possible, once a machine is sold to a client as new, they cannot take it back, even if it is not the right machine for the patient, even if their initial recommendation was for one and not the other. BUT, because I have the rental one, that saved me, and they will be able to do the exchange.

I was covered under insurance (new machine allowed every 5 years), but I cannot imagine people spending the big $$$$ only to find out they do not like their machine and are then stuck with it, or have to sell it at a loss to get the a different one. And speaking of cost, I am from Canada, and my DS bill was $1900 CAD with 1 mask and tube. Since these machines are cheaper online, I would assume that the higher price at a sleep clinic is to cover the support costs of the apnea techs and doctors.

[SideSleeper]

Neils, your quote: "Either way, I will most certainly download it and play around with it once I trade in the DS for the AS when I get back. I love to analyze data, so the more the better."

 I personally would do one more step before turning in the DS.  Respironics machines keep everything on the SD card and SleepyHead can read that card from the first day of service.  Once you download it to SH you can go back the the day you had the attack and see exactly what happened--people here are very good at analyzing the statistics.  The ResMed machine might be the best thing for you, but at least you might get an insight on what happened.  Once you turn in the machine that opportunity is gone.  JMHO!  Best of luck in whatever you do.  Relax and have a good time on your cruise!