Newbie -- specifics help to get started quick

[HerbM]

There is a LOT of information out there, and here on this board, so I am trying to find a best practical path through it to get started.

After the sleep study, the Dr. office called with the diagnosis (haven't seen it yet) and to say that a machine was needed.

FYI: A month ago my dentist gave me a home pulse-ox recorder which showed about 18 events one night and 32 the other (note, from what I can tell this gives a lower number than the sleep study since it only measures apneas, while the lab study includes hypopneas in the count for diagnostic purposes. I believe this is moderate to moderately high but don't really know.)

As a techie and looking to obtain my first machine, I really don't like the idea of doing this without reasonably full information or just getting the "usual" when there are obviously so many choices out there to make this all work better for each person -- so I am trying to read everything but the quantify of information and the fact that much of it is out of date (on various other sites) requires a large effort.

Please guide me to the CURRENT best/fastest and most useful source for specific information to know how to help pick a machine -- and go to the DME appointment with the info to understand if they are giving me the right choices.

EDIT: The DME, at my request, did send the list of available machine choices:

• Resmed-S9 Autoset-www.resmed.com
• Remstar Auto-www.respironics.com
• Icon Auto-www.fphcare.com

(I will happily walk out and find another source if the DME isn't helpful -- it's my nature anyway -- but so far they have been pretty good and my goal is to also avoid delay even though my apnea has likely been present for many years and my symptoms do NOT include most of the discomfort that many of you experience. I don't get headaches, or drowsiness when there are things to do nor watching TV etc, and don't really feel sleep deprived but treatment is likely very important due to controlled high blood pressure and controlled Afib -- e.g., reduce the needs for meds and avoid stroke, and hopefully sleep better too.)

One thing the DME rep did fib about: The rep told me that I couldn't get any software of my own. (I guess they don't want people to be at all self-sufficient.)

Without this info, I suspect that I will be going to my appointment and having to "take what they give me" -- the insurance/finance person did indicate they have a half dozen or so machines available.

However they did tell me that they offer about a half dozen machines the therapist can help me choose.

As a lifelong mouth breather with chronic nasal obstruction it seemed to me that any mask that doesn't let me FULLY breath through my mouth is not likely to lead to success.

Even at the sleep study, I immediately chose the full face mask to include my mouth, but the mask seemed to only allow my mouth to open a bit and it never seemed to push enough air to get through my nose and/or mouth with my continued conscious assistance. (FYI: I went to the test after using my long term nasal spray AND wearing a BreathRight strip so my nose was usefully open but not really clear.)

Talking to the DME, they already agreed to order the Fisher & Paykel Oral CPAP Mask (Oracle HC452) that is likely essential to me as a mouth breather with nasal obstruction issues.

There are an awful lot of people posting (here and on other sites) who have been on CPAP for some time but admit they don't get to use their machines due to various problems. And apparently the statistics are that somewhere around only 50% actually comply with the treatment.

In some sense, I don't much care about the money (within reason) as this is something that ideally we would spend 5-10 hours per day USING and it SHOULD make a giant difference in our quality of sleep and quality of life.

(And if it doesn't do that then this whole CPAP thing would just be a big scam and a waste of time and energy. )

My attitude is that any reasonable cost for sleeping well is well spent since a good portion of our lives is dedicated to (trying to ) sleep.

Also, how the heck will they set my pressure since my sleep lab CPAP test never allowed me to get to sleep -- they never upped my pressure to stop the events.

I lay without tossing and turning some 3 hours comfortably but unable to turn over my breathing to automatic control. (I am good at doing insomnia so it was no big deal to relax otherwise.) After the first 2 hours, I called the tech and asked to up the pressure without having to go to sleep first. I think he may have bumped it from 4 to 6 but not really certain.

Unfortunately, with the split study my time ran out at 3 hours and he had to kick me out.

Please help me narrow down my research so that I can get it done in the next few days and go get a machine that stands a fair chance to work.

With my insurance, it's only $62 to start and $11 per month so it's no big deal to try I suppose, use the experience to learn more, and then switch, either with this DME or by ordering on the Internet.

(I am BIG on ordering on the Internet anyway; buying almost all shippable things there. Amazon, eBay, and Google are my friends and I never get ripped off.)

Thanks so much for any and all help or suggestions.

Sweet dreams and sleep tight.

[Badnvsleep]

Hello, this is a great place to find information. I started at the home page, top section has a lot of info. Try this link as well: http://tinyurl.com/2arffqx. The are a few others I just don't have them handy. Make sure that whatever machine you get has full data recording, not just compliance data. That is the only way you will truly understand what is going on with your treatment. I hope the link works, first time trying to post one here....

Here is another place to start: http://adventures-in-hosehead-land.blog ... -with.html...

Happy reading......

[Janknitz]

When they tell you there's no software for patients to use and that you can't touch the settings on the machine, just smile and nod. What they don't know won't hurt them.

[kaiasgram]

One thing the DME rep did fib about: The rep told me that I couldn't get any software of my own. (I guess they don't want people to be at all self-sufficient.)

Probably wasn't fibbing about it -- I'm guessing most sleep professionals and DME reps don't know about Sleepyhead. I told my sleep doc about it last year, head of his department -- he was surprised.

That's not to say that DMEs don't fib (fib being a generous descriptor in this case ).

We had a thread going some time ago about dumb, inaccurate and downright false things that DMEs have said. It was good.

[robysue]

As a techie and looking to obtain my first machine, I really don't like the idea of doing this without reasonably full information or just getting the "usual" when there are obviously so many choices out there to make this all work better for each person -- so I am trying to read everything but the quantify of information and the fact that much of it is out of date (on various other sites) requires a large effort.

Please guide me to the CURRENT best/fastest and most useful source for specific information to know how to help pick a machine -- and go to the DME appointment with the info to understand if they are giving me the right choices.

EDIT: The DME, at my request, did send the list of available machine choices:

• Resmed-S9 Autoset-www.resmed.com
• Remstar Auto-www.respironics.com
• Icon Auto-www.fphcare.com

I've recently written two posts that will be useful to you.

On this post Re: new auto cpap I wrote a nice summary of the important facts about the four most common brands of PAP machines on the US market. All three of the machines your DME is willing to provide are on this comparison chart.

And all three of the machines are top-notch APAPs that record full efficacy data and are full of comfort features. But as a self-described techie, you probably want to steer clear of the Icon because no-one knows how to obtain the software needed to download your data to your own computer and analyze it.

As for useful information that may help you choose between the Resmed S9 Autoset and the PR System One REMstar APAP, you may find this post quite useful: Re: new auto cpap In this post I provide a very detailed comparison of the S9 and the Series 60 System One. The comparison includes comfort features, data recorded, on-board data displays, software needed to download the full data, and the autoPAP algorithms each machine uses.

Best of luck

[kaiasgram]

When they tell you there's no software for patients to use and that you can't touch the settings on the machine, just smile and nod. What they don't know won't hurt them.

[robysue]

As a lifelong mouth breather with chronic nasal obstruction it seemed to me that any mask that doesn't let me FULLY breath through my mouth is not likely to lead to success.

There are a whole lot of full face masks (FFM) out there that cover both the mouth and the nose; they're designed to allow full mouth breathing. But note that FFM can be more challenging to adjust to: They're more prone to leaks and they are heavier on the face. But there is now a lot of variety in the FFM market ranging from all cloth masks to a monstrously large mask that literally covers the entire face, not just the nose and mouth. You may go through several masks before finding a FFM that works for you.

Even at the sleep study, I immediately chose the full face mask to include my mouth, but the mask seemed to only allow my mouth to open a bit and it never seemed to push enough air to get through my nose and/or mouth with my continued conscious assistance. (FYI: I went to the test after using my long term nasal spray AND wearing a BreathRight strip so my nose was usefully open but not really clear.)

You may want a FFM that tends to run on the large side when it comes to fitting things.

There are an awful lot of people posting (here and on other sites) who have been on CPAP for some time but admit they don't get to use their machines due to various problems. And apparently the statistics are that somewhere around only 50% actually comply with the treatment.

That is the commonly cited statistic. Given how little help many newbies get from their (not so friendly) DME, its a wonder that 50% of new PAPers do make it to full compliance.

In some sense, I don't much care about the money (within reason) as this is something that ideally we would spend 5-10 hours per day USING and it SHOULD make a giant difference in our quality of sleep and quality of life. (emphasis added)

(And if it doesn't do that then this whole CPAP thing would just be a big scam and a waste of time and energy. )

Reasonable expectations are important. Not everybody sees a giant (positive) difference in the quality of sleep. And not everybody sees a giant increase in the quality of life. There are just too many variables for CPAP to work miracles for everybody: If anything else other than untreated OSA is contributing to your bad sleep, then there's a limit to how much PAP will do since PAP fixes OSA and nothing else. If the quality of your life is adversely affected by medical conditions other than untreated OSA, then CPAP may not miraculously make everything better.

But CPAP should help---once you are sleeping soundly with the machine every night, all night long. And be forewarned, it takes some people a lot longer than others to get to where they are sleeping soundly with the machine every night, all night long. And most of those 50% of new PAPers who don't make it to full time compliance give up before they've learned how to sleep well with the machine.

For most new PAPers, it can take anywhere from a couple of weeks to a couple of months to sort out how to sleep well with the mask on their nose. And it can take an additional couple of weeks to a couple of months before the new PAPer actually starts to feel better during the daytime in terms of energy levels and getting rid of the daytime sleepies. And for some unlucky newbies (Iike I was) it can take a lot longer to get to where you are feeling better. And during the adjustment period it's possible to feel a whole lot worse than you did before starting PAP. It all depends on just how hard it is for your particular body to get used to falling asleep with a machine blowing air down your windpipe. Because until you can fall asleep with the mask on, and keep it on all night long, there's a real limit to how much good the CPAP can do for you.

Also, how the heck will they set my pressure since my sleep lab CPAP test never allowed me to get to sleep -- they never upped my pressure to stop the events.

The DME is offering you your choice of three top of the line APAPs. The doc will probably write a script to set the machine wide open: Min pressure = 4cm, max pressure = 20cm. And the doc will probably want the efficacy data from the machine after you've been using it for a week or two. The efficacy data will show how high the machine had to go in order to treat your OSA. And at that point, the doc may want to write you a script for a fixed pressure machine set at your 90% or 95% pressure level from the week or two of data on the machine.

And that's where you need to be careful with the DME: You need to be sure that they're selling you and your insurance the APAP (through a rent to own agreement) rather than lending you the APAP with the intention of switching the loaner APAP out for a new fixed pressure CPAP that's also a brick that records no efficacy data.

I lay without tossing and turning some 3 hours comfortably but unable to turn over my breathing to automatic control. (I am good at doing insomnia so it was no big deal to relax otherwise.) After the first 2 hours, I called the tech and asked to up the pressure without having to go to sleep first. I think he may have bumped it from 4 to 6 but not really certain.

This does not bode well if the APAP is set wide open. You may want to ask the doc if the APAP script could have the min pressure set to 6cm rather than 4cm.

And since you are "good at doing insomnia", you may find that once the machine moves into your bedroom, it may bring along a baby insomnia monster with it. That's what happened to me. There are a whole bunch of things you can do to try to keep the insomnia monster under control. But at the beginning, it's important to try to keep that insomnia monster from growing out of control to the point where you feel as though you can't get to sleep or stay asleep with the mask on your nose.

Unfortunately, with the split study my time ran out at 3 hours and he had to kick me out.

Please help me narrow down my research so that I can get it done in the next few days and go get a machine that stands a fair chance to work.

With my insurance, it's only $62 to start and $11 per month so it's no big deal to try I suppose, use the experience to learn more, and then switch, either with this DME or by ordering on the Internet.

As I said in the last post: The three machines the DME is offering you are the best APAPs out there on the market. You're not going to do better in terms of finding high quality, up-to-date equipment. The key, however, is to make sure that the DME is selling you the APAP as your permanent machine rather than lending it to you for the autotitration with the intention of replacing it with a cheaper machine once the autotitration is over.

[mgaggie]

And all three of the machines are top-notch APAPs that record full efficacy data and are full of comfort features. But as a self-described techie, you probably want to steer clear of the Icon because no-one knows how to obtain the software needed to download your data to your own computer and analyze it.

I have used Sleepyhead software to read both Icon Auto and my Icon Novo with no problems.

I like the Icon because it has a built in humidifier and is quite compact compared to other machines, no separate chambers or bits to lose. To me it looks like a large clock radio (without the radio of course).

As for masks, if money isn't an issue try a range of masks. I had the unfortunate luck of being told at my first titration that I didn't mouth breath so forked out $170 for a nasal pillow, to only be told I was mouth breathing at my second titration. Being on a limited income and FFM's being $300+ here, I was very lucky to receive an almost brand new FFM from an abandoned research study and am able to tolerate it.

[HerbM]

When they tell you there's no software for patients to use and that you can't touch the settings on the machine, just smile and nod. What they don't know won't hurt them.

I LOVE this Spy Meets Spy cartoon. Thanks so much. Now I just need to find my trench coat and get a snap brim fedora.

[HerbM]

Thanks to everyone who replied -- I skimmed the fast (need to get to bed) and will try to reply more fully soon when I have followed the suggestions, but some quick thoughts:

DME fibbing MIGHT have been ignorance, but then besides sleepyhead many models have software (even if crappy).

The F & P icon indeed doesn't seem to have software -- SleepyHead site says he is adding it "real soon now" and the manufacturer's "SmartStick Studio Software for F&P ICON CPAP Machines" is marked as "DISCONTINUED". Drat! Crud!

[I was starting to like the ICON idea of a built in heater/humidifier with heated hose for no extra charge.]

I don't actually have much if any of the DISCOMFORT systems so I am not expecting THAT big a change in my sleep -- just that I would be a lot healthier in the long run (BP, AFIB, stroke avoidance, heart in general, etc.).

If I get a big boost in sleep then that will be great too.

My comment about being "good at insomnia" wasn't clear -- this was supposed to say that I am very good at dealing with and overcoming insomnia so even if the monster appears that will likely be manageable as long as I can learn get a proper mask to allow me to breath comfortably and give up conscious control.

If I have to lay there for hours to do that the so be it. No biggee, been there, done that, probably have a t-shirt somewhere.

FFM: I could wear and considered the idea of an FFM as I was a commercial diver (hard hat helmet, surface supplied mostly) and being in their doesn't bother me, but the issue with the large oral nasal that I tried is that it really didn't let me fully open my mouth or allow for any mobility or choice in HOW FAR to open it.

The DME said that this was "rent to own" $62 to start and $11 x 10 months to own, which means the real cost is about $900. Since I am paying 20%. I hope that means the heater/humidifier is including in the two popular machines. (ResMed and Respironics) as it is in the F&P.


I actually woke up the other night thinking about this and decided that if there wasn't a 'scuba like oral mask' then someone should invent one. Looks like the one by Fisher & Paykel is pretty much what I designed in my dreams.

It's my intention to ask for that (3 months until it can be switched for free since it is special order they tell me) F & P Oracle HC452 unless...

Someone of you or some new information convinces me that is a bad idea. (Open to opinions if you know something you think useful.)

Nighty-night; sleep well.
--
HerbM

[mgaggie]

The F & P icon indeed doesn't seem to have software -- SleepyHead site says he is adding it "real soon now" and the manufacturer's "SmartStick Studio Software for F&P ICON CPAP Machines" is marked as "DISCONTINUED". Drat! Crud!

Repeat: I have used sleepyhead with my icon with no problems

[Janknitz]

The DME said that this was "rent to own" $62 to start and $11 x 10 months to own, which means the real cost is about $900. Since I am paying 20%. I hope that means the heater/humidifier is including in the two popular machines. (ResMed and Respironics) as it is in the F&P.

You should clarify this with the DME. In most cases the humidifier and tank are separate PURCHASES, not part of the monthly rental cost, as are "consumables" (hose, filters, mask). If you have a standard hose, your first one MAY be included in the set up.

[cmills56]

I wish that I would have been able to find something like this when I first started using a CPAP 3 years ago. It was a nightmare for me at first. I didn't know anything related to apnea. Then there was learning how to deal with the insurance side of things to boot. I didn't know as much about the internet back then, or I may have found this forum or some place as great as this. Thanks for taking the time to create a thread. I am sure there are countless newbies who will benefit hugely from the wisdom, help, and insight.

[HerbM]

The F & P icon indeed doesn't seem to have software -- SleepyHead site says he is adding it "real soon now" and the manufacturer's "SmartStick Studio Software for F&P ICON CPAP Machines" is marked as "DISCONTINUED". Drat! Crud!

Repeat: I have used sleepyhead with my icon with no problems

Sorry MGaggie, I missed that on a quick first read.

Here's my update on getting started: Appointment next Thursday so they have time to order the Oral Mask. (I am pretty sure as a former diver and mouth breather this is going to be best for me.)

The rep told me that all 3 machines have Humidifiers and Heated tubes so it looks like they are not scrimping -- every time I hinted that it was possible to buy anything extra they (both reps) assured me that everything was included at the already given price.

I am tentatively picking: Resmed-S9 Autoset

Trying to figure out if it has the ClimateLine tubing (which seems to be the only heated version and which sounds much better for controlling rain out). It's about $40 if I have to buy it.

Are there any "revisions", "versions" or "submodels" of the S9 Autoset that I need to watch out for? (Sometimes you get last year's version of the same "model".)

One of my hobbies is firearms, and everyone who owns pistols seriously seems to have a "drawer full of holsters" that they bought and didn't like or ever use much -- it's a much bigger problem that TV and Movies would have you believe.

But I am the guy who has PRECISELY the holsters that I use and some are even quite unique or unusual designs -- I did a good job of picking and got very lucky as well.

Let' s hope I do as good and get as lucky this time around.

You folks have been a great help, both specifically here in this thread and elsewhere all over the forum. I went from being almost overwhelmed by information overload and uncertainties just YESTERDAY to be fairly confident of success and making the appointment this morning.

I am sure you folks will be a very important help to me going forward. Frankly I suspect you may be my MOST IMPORTANT resource, more so than the DME or even the Doctor.

THANKS and PLEASANT DREAMS TO ALL!

[Islandwoman]

This is all great information including the links(new to me). I would like to see it "Above the Line" in Announcements so all of it doesn't disappear in the post time warp.