RE: Just Diagnosed - Anyone else also have CFS?
(05-04-2018, 11:58 AM)Spy Car Wrote: ETA: Make sure your first machine has the ability to record full efficacy data (not just compliance data). It is essential to monitor your condition using the free Sleepyhead software (especially with mixed/central apnea). That way you'll know if you'll need ASV (or not).
If you can get a ResMed AirSence 10 Autoset APAP with a heated hose to start (Regular or "For Her" models) all the better IMO.
Thanks Bill. I'll be sure to ask about that and also the Sleepyhead software. Glad to hear it's helped you to a degree. With ME/CFS we're happy for anything that improves our energy and sense of well being. 
05-04-2018, 03:15 PM
(This post was last modified: 05-04-2018, 03:16 PM by Spy Car.)
RE: Just Diagnosed - Anyone else also have CFS?
(05-04-2018, 02:59 PM)Suzi Wrote: (05-04-2018, 11:58 AM)Spy Car Wrote: ETA: Make sure your first machine has the ability to record full efficacy data (not just compliance data). It is essential to monitor your condition using the free Sleepyhead software (especially with mixed/central apnea). That way you'll know if you'll need ASV (or not).
If you can get a ResMed AirSence 10 Autoset APAP with a heated hose to start (Regular or "For Her" models) all the better IMO.
Thanks Bill. I'll be sure to ask about that and also the Sleepyhead software. Glad to hear it's helped you to a degree. With ME/CFS we're happy for anything that improves our energy and sense of well being.
It has actually helped a good deal and (as you say) anything that improves energy and reduces brain-fog is a big help.
Prior to sleep apnea treatment, I had a lot of insomnia. It seems to me that treatment helped break a bad cycle.
There are very knowledgeable people here who can help you maximize your therapy and comfort once you get the machine and post data.
If you can ask the doctor to specify the precise machine you want and write "dispense as written" on the prescription. Some DMEs are not scrupulous and will attempt to provide a less able (or even used) machine if they can get away with it.
Bill
05-04-2018, 03:53 PM
(This post was last modified: 05-04-2018, 03:55 PM by Fats Drywaller.)
RE: Just Diagnosed - Anyone else also have CFS?
(05-04-2018, 03:15 PM)Spy Car Wrote: If you can ask the doctor to specify the precise machine you want and write "dispense as written" on the prescription. Some DMEs are not scrupulous and will attempt to provide a less able (or even used) machine if they can get away with it.
It's not only that, and I think in a lot of cases the DME itself is relatively benign, maybe even blameless. Mine was, and is, but just because my prescription specified one fixed pressure, of course the RT wanted to give me a machine that can only do fixed pressures and I had to plead my case to get the specifications nudged upward and get an Autoset.
I've come to the conclusion that there are usually too many models of CPAP machine in the lineup of each manufacturer. As was discussed here recently, the vast majority of the differences among the lower-tier machines from any one manufacturer are in the firmware, and then it's only when you get up to the tier of the bilevel machines (and then ASV beyond that) that the electromechanical components need to be spec'd higher, increasing the manufacturing cost.
One example is that when I asked for my Autoset, if I had known about the "Autoset for Her" model I would have requested that instead, despite the incredulity of the RT ("What, are you a pre-op transsexual?"), only because it includes a second APAP algorithm to choose from, at the same price, and maybe that would be nice to have eventually; who knows. I think Resmed should have merged those two variants into a single model, and those who don't need the second algorithm (not selected by default in the firmware) can ignore it.
Having gone through the big CPAP-machine research & survey for my own benefit a couple of months ago, I feel qualified to gripe about this, if only just barely. Because that research took me several tedious days of intensive web browsing, downloading & reading of boring documents, compiling of lists & comparison charts, etc., before I was able to put together a final, definitive short list of what I wanted to buy and/or would accept from any DME ... and that list consisted of only four machines from three manufacturers! I ruled out at least a dozen others.
So it's a little bit like having too many pointless choices of similar products on the shelves of a supermarket.
RE: Just Diagnosed - Anyone else also have CFS?
(05-04-2018, 03:53 PM)fats Wrote: Having gone through the big CPAP-machine research & survey for my own benefit a couple of months ago, I feel qualified to gripe about this, if only just barely. Because that research took me several tedious days of intensive web browsing, downloading & reading of boring documents, compiling of lists & comparison charts, etc., before I was able to put together a final, definitive short list of what I wanted to buy and/or would accept from any DME ... and that list consisted of only four machines from three manufacturers! I ruled out at least a dozen others.
So it's a little bit like having too many pointless choices of similar products on the shelves of a supermarket.
Which is why I tried to cut through all the need for research by offering up what I (and most) would consider the best APAP machine on the market.
Either the basic ResMed AirSense 10 AutoSet with a heated hose or the slightly more preferable "For Her" model of the same (which has the option of one additional algorithm and a different case design).
Someone with typical CFS brain-fog doesn't need days of tedious research. And yes, the names can be very confusing.
Bill
RE: Just Diagnosed - Anyone else also have CFS?
(05-05-2018, 02:36 PM)Spy Car Wrote: Which is why I tried to cut through all the need for research by offering up what I (and most) would consider the best APAP machine on the market. ... Someone with typical CFS brain-fog doesn't need days of tedious research.
Sure, that's fine. But I think you misunderstood. What I was talking about is the confusion that the DMEs inadvertently create among patients, simply because there are too many machine types on the market, with each manufacturer thinking that it has to have five or six models in its range, when most of those are identical except for the firmware.
Also, someone's recommendation of a specific model can substitute for days of research if the patient who is shopping around is willing to take the person's word for it and click the "I'm feeling lucky" button. If it were me, I wouldn't be blindly taking anyone's word about a $900 machine; I'd do the research, regardless of brain-fog. YMMV.
05-05-2018, 11:17 PM
(This post was last modified: 05-05-2018, 11:18 PM by Spy Car.)
RE: Just Diagnosed - Anyone else also have CFS?
(05-05-2018, 02:59 PM)fats Wrote: Sure, that's fine. But I think you misunderstood. What I was talking about is the confusion that the DMEs inadvertently create among patients, simply because there are too many machine types on the market, with each manufacturer thinking that it has to have five or six models in its range, when most of those are identical except for the firmware.
Also, someone's recommendation of a specific model can substitute for days of research if the patient who is shopping around is willing to take the person's word for it and click the "I'm feeling lucky" button. If it were me, I wouldn't be blindly taking anyone's word about a $900 machine; I'd do the research, regardless of brain-fog. YMMV.
I actually understood the point about there being multiple models, different brands, and a lot of confusion. It is a true point.
I'm also confident in my recommendation of the two ResMed AirSense 10 AutoSet machines. The same device you chose, right? 
Bill
RE: Just Diagnosed - Anyone else also have CFS?
Back to the topic:
Also have your pharmacist or doc go over your medications with you to see if they interfere with sleep and contribute to central apnea. Knowing this ahead of time will help with understanding the data you may see. You may have to move meds around (like in morning vs at night) and watch the trends.
I don't have CFS but I do have a bunch of other alphabet soup. I have to be careful of certain medications as they increase my central events.
Consider starting a sleep journal when you get your machine. Write down type of day (fun, stressful, meh) and how you feel. In the morning, note how you slept, how you feel, and whatever else happened. You can use the journal to keep notes of when you made changes to the pressure and what they were. You'd only have to do it for a month or two maybe? Maybe just a month.
We look for trends in terms of data and results, not just for a single night. Changes are made slowly in order to fully see if the increase of certain events (or decrease) was due to X or Y.
PaulaO
Take a deep breath and count to zen.
RE: Just Diagnosed - Anyone else also have CFS?
Journaling is an excellent idea. Thank you Paula!
RE: Just Diagnosed - Anyone else also have CFS?
(05-05-2018, 11:17 PM)Spy Ca Wrote: I'm also confident in my recommendation of the two ResMed AirSense 10 AutoSet machines.
Bill, I finally got an appt next week to get my stuff. My doctor ordered ResMed AirSense auto. They want me to upload the data to ResMed's AirView - I asked about Sleepyhead but the DME nurse had only just heard about it the other day. But she said I could use both.
They'll let me pick my own mask. I'm pretty sure I don't sleep with my mouth open so I'll probably start with a nasal one.
Thx for your input.
RE: Just Diagnosed - Anyone else also have CFS?
(05-09-2018, 11:10 PM)Suzi Wrote: (05-05-2018, 11:17 PM)Spy Ca Wrote: I'm also confident in my recommendation of the two ResMed AirSense 10 AutoSet machines.
Bill, I finally got an appt next week to get my stuff. My doctor ordered ResMed AirSense auto. They want me to upload the data to ResMed's AirView - I asked about Sleepyhead but the DME nurse had only just heard about it the other day. But she said I could use both.
They'll let me pick my own mask. I'm pretty sure I don't sleep with my mouth open so I'll probably start with a nasal one.
Thx for your input.
Suzi make sure when you pick up your machine it has an sd card in it as if the Dr will be using the AirView they do not need one in the machine. If the DME will not give you one just buy the cheapest full size SD card you can find anything up to 32gb will work, go by price not size
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