Kenny's CPAP Thread

[tattooyu]

GumbyCT,

Ever since my sleep study, I have been going through all that information, and yes--it's a lot of information!

There are a few links in there I haven't seen yet. Thanks!

[boston]

Your already ahead of the game coming here to start.
If I were you, I'd start calling local DME's, find out who is in network for your insurance and tell them your getting a script for XYZ machine and ask if they have it on hand.
I'd also look at cpap.com and check out which masks you might want to try.
Hopefully that way you can go straight to one DME and get what you want, and cut out some of the BS some of us have dealt with.

GOOD LUCK !!!

[roster]

Regarding panic attacks, I will make a wild forecast that you might see some relief from panic attacks if you get a successful CPAP therapy. When you are having apneas a lot of bad s@#^ is happening to you. When you are choking and struggling to breathe, you get pumped with excess adrenalin. Adrenalin is, of course, the so-called fight-or-flight hormones. "Flight" as in "panic". So you might see some relief.

Good luck and keep us updated.

[nomoore]

Regarding panic attacks, I will make a wild forecast that you might see some relief from panic attacks if you get a successful CPAP therapy. When you are having apneas a lot of bad s@#^ is happening to you. When you are choking and struggling to breathe, you get pumped with excess adrenalin. Adrenalin is, of course, the so-called fight-or-flight hormones. "Flight" as in "panic". So you might see some relief.

Good luck and keep us updated.

+1

I have had anxiety issues all of my life. After cognitive therapy I often no longer had mental reason for the anxiety yet I still had physical symptoms of it. Since I've been on CPAP for a few months my anxiety levels have VASTLY improved.

[Pineapple]

I'll agree with Rooster that some things will change as you get your therapy working. My claustraphobia went away enough that I could use a full face mask - a godsend for a mouth breather.

Personally, I think all newbies do better at adjusting to therapy with some sort of pressure relief - Cflex, Aflex, EPR, did I miss any? To answer your question Cflex relieves on the exhale side and works with CPAP mode, Aflex relieves on both sides, but is only available in APAP mode (note an APAP can be run in CPAP mode) I used Cflex for the first month and don't think I would have done well without it then, but after I got used to therapy, I found I didn't need it. (BTW I also think newbies need the Ramp feature turned on aleast when they are starting - it starts your pressure at a lower level and lets the pressure build up over a time period. I also stopped using it once I got used to therapy)

[tattooyu]

Turns out my insurance is contracted with:

• Apria
• Metromed
• Lifecare Solutions

However, the person at my medical group was under the impression that I would have to wait and see which DME my doctor uses, if any. I thought I could choose my own DME?

APAP, CPAP, C-Flex, A-Flex, full mask, nasal mask, nasal pillows... aaaaaaaaaaaaaaaaaaaaaaaaah!

Thanks, Pineapple. It'll all sink in eventually.

[cflame1]

you should be able to... but that will be a discussion between you and your doc.

recommendation based on what I've read on here, don't start with Apria.

[tattooyu]

cflame, that's what I've read on here too. Looks like Lifecare might be okay.

[alnhwrd]

Kenny,

To clarify a couple of things for you,

A Data Capable machine means that it is capable of providing at a minimum your nightly

Pressure
Leak Rate
Apnea Index (number of apneas or total blockages of your airway/per hour)
Hypopnea Index (number of hypopneas or partial blockages of your airway/per hour)
Apnea/Hypopnea Index, which is the above two numbers added together.

Even better is if the machine has a card reader that will allow you to access this information via your home computer and print it out in a report.

The reason this information is important is that the sleep study you did was a single night snapshot of your medical condition, and it may be that you will sleep differently/better at home which could effect your therapy needs. Proper data will tell you if you are still having events and give you the tools to reduce them.

Be careful, some people might tell that a machine is "data capable" when it only counts usage and blower hours. If someone tells you the machine they want to sell you is data cpable, your next question should be, "What data does it record?". If they do not use the terms I listed above, do not accept the machine. Do not let them tell you that you don't need to worry about data. Be nice, be polite but be insistent. If it were me, I would push for an Auto. The reason being that all autos can be used as a staright CPAP, but a straight CPAP cannot function as an Auto. You might not need an Auto right now, in fact many sleep better with a straight CPAP, but it is nice to have the option.

Be wary of anyone who tells you they don't like to give the patients Autos and other extras becuase it just means there are more things to go wrong. You MUST get a heated humidifier and some form of exhalation relief, which means A-flex, Easybreathe, Cflex or EPR, depending on the brand. These are "comfort" features, but will help you be one of the fifty percent of the people who succeed at CPAP therapy. Your machine should also have a ramp feature too, another comfort feature that gradually increases pressure over time to allow you to fall asleep before the machine gets up to full pressure. In time you may no longer need these (I no longer use ramp or EPR) but they are, IMHO, essential for newbies.

Only use distilled water in your humidifier, it will save you a load of hassle later. Go buy some now.

You already have the most important item for succeeding at CPAP, and you didn't even have to pay for it. You have exactly the right attitude, the desire to make it work, and the interest to do the research about the topic. Keep us posted as to how things go for you, and don't hesitate to jump into chat if you need a quick answer to something. Best of luck to you!

Alan

[roster]

........
APAP, CPAP, C-Flex, A-Flex, full mask, nasal mask, nasal pillows... aaaaaaaaaaaaaaaaaaaaaaaaah!

.........

Yep, that is the way it feels starting out. You will learn much quite quickly and especially if you ask. Just ask a yes-or-no question and we will give you a dozen answers and start arguing among ourselves.

As far as a mask, if you don't breathe through your mouth or leak CPAP air out through your mask, you should use a nasal mask or nasal pillows. They are smaller, lighter and lest confining than full face masks.

Ask the doctor about the mouth breathing or leaking results from your studies.

If you do mouthbreathe or mouthleak, then it is best to start out with a full face mask. We can recommend the most popular brands of either type of mask.

[tattooyu]

rooster,

I definitely noticed that I had the "puff of air" come out my mouth a few times during the study, but I did manage to keep my mouth closed most of the time. What a horribly unpleasant feeling that is when you open your mouth!

Hopefully, the DME will allow me to try on a few masks to see which I like.

[roster]

rooster,

I definitely noticed that I had the "puff of air" come out my mouth a few times during the study, but I did manage to keep my mouth closed most of the time. ........

It is not the "most of the time" that is the problem with one's mouth. You need that full face mask for the few times when the mouth is acting up. Keep a look out for the problem; it is not a foregone conclusion in my mind, but you sound like a candidate for a full face mask.

[rested gal]

What great info people are giving you in the thread you started, Kenny! And what a good job you're doing educating yourself to get ready for good-breathing-while-sleeping!!

I definitely noticed that I had the "puff of air" come out my mouth a few times during the study, but I did manage to keep my mouth closed most of the time. What a horribly unpleasant feeling that is when you open your mouth!

If you puffed air out your mouth a few times that you were aware of, Kenny, I'm sorry to say it's pretty likely you are going to do some mouth-breathing and/or air leaking out your mouth during the full relaxation of sleep. Maybe not, though. Maybe you'll be lucky and not do that.

There's going to be only one way to be sure, though. That "data capable" machine - which will record leak data as well as AHI data.

If you get a ResMed machine, the leak data will be displayed most clearly. Zero is the ideal leak rate with a ResMed machine and shows up clearly in the "nightly" data in the LCD.

If you get a Respironics machine, there is no option for "nightly" data...just a running weekly/monthly average, which is next to useless info imho. I want to see just what happened last night. Not a weekly or monthly average, which can be skewed by one unusually terribly leaky night in the midst of, say, a week of better leak control. A "terrible" leak night can happen, for example, if a person is having a lot of mask problems - taking the mask off frequently to adjust and readjust, or the mask coming loose or springing a bad leak on one side while the sleeper "sleeps" through it. Anyway, you get the picture. Much better to be able to see leak data (and AHI data, for that matter) for "just last night" when any problems you had are fresh on your mind.

There's a work-around with Respironics machines, to show "just last night's data." A bit cumbersome, but it works:

How to reset the M series machine "weekly"/"monthly" details back to zero, in order to view just last night's results the next day:

viewtopic.php?p=239127#239127

viewtopic/t29141/Resetting-the-data-on-Respironics.html

With a Respironics machine, the Encore Viewer software that you can buy for yourself would give you tons of useful data... the Daily Details graph it produces lets you see all kinds of details about "last night's treatment."

The Sandman Auto also has very detailed software you can buy.

You probably have already seen this, Kenny, but for the benefit of other newer readers:
My list of machines that record "full data" (AHI and leak data) and those that don't -- as of October 2008:
viewtopic.php?p=307168#p307168

Hopefully, the DME will allow me to try on a few masks to see which I like.

Better yet, hope that the DME will let you take a mask home to try AT HOME, all night, in your own sleeping environment. Masks can feel fine and seem to seal fine when the DME fits in on your face at their office, sitting up in a chair. They should let you lie down on a bed, couch, or cot, or on the floor, if need be. Yes, the floor, even! Take your pillow (in an old pillowcase you can throw away later) and leave your dignity at home...give the masks a thorough workout at the DME's office! Toss and turn in all your sleeping positions right there.

Try to find a DME who will let you return mask after mask after mask during the first month. The mask will be the real key to "doing" CPAP treatment. Even more important than what machine you receive, imho. Getting a mask you can actually sleep in, without wanting to tear the thing off and throw it against the wall, is the most important item.

After you get a mask, if it suits you "almost" but not quite, check out the Lab Rat Awards link, to see modifications many have made to their masks to tweak them to perfection (or as close to that as we can get! )
LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

You might even see a modification to a mask other than yours, that can be applied to your mask in some way.

Good luck! You're going in there well armed! What a shock to the DME. Most of them aren't used to hearing sheep/cattle talk. Actually, there are some good'uns out there who appreciate a pro-active, well informed customer. Hope you draw one like that!

[roster]

Kenny,

About machines, here is what I thought was a pretty good post. All of the thread can be found at viewtopic.php?f=1&t=38234&st=0&sk=t&sd=a&start=30 .

........ I'd be surprised if the Respironics machine wins

I'd be cussed surprised if the Respironics machine wins. It is full of horrible design defects. If DeVilbiss did not do better they should close down shop.

Some complaints about my Respironics A-Flex (add yours to the list):

-Irritatingly loud
-Infernal blue lights illuminate my ceiling
-Diabolical humidifier tank hard to fill
-Diabolical humidifier tank prone to leak
-Diabolical humidifier tank made out of material that will stink badly if you accidentally let it run dry
-Very cumbersome integration of humidifer with CPAP machine
-That confounded black block of a power transformer
-Output hose connects to the danged back of the machine!

It blows air and has decent software; otherwise I have nothing good to say about it.

Hey - Rooster - The grass is always greener from the other side of the fence. Loud? You don't know loud till you try the Sandman Auto. The Intellipap auto is VERY quiet.

Quiet:
Intellipap Auto - Best
S8II Auto ties M-series Auto or slightly quieter
Sandman Auto - LOUD especially on INHALE

Lights:
Sandman and S8II - No lights after a minute or so
Intellipap - Glowing green/yellow lights - never go out
M-series - Worst - Bright blue lights

Humidifier tank:
S8II - Easiest to fill and never a bad odor and BIG and works great H4I
Intellipap - Not too hard to fill but harder to separate and no odors
M-series - Not that easy to fill especially new style and plastic has an odor and really stinks if run dry - mine have never leaked
Sandman - Real PITA to remove and fill - must be separated to fill right - PITA to reinstall on machine tight - No odors - Best water and rainout management - works great

Cumbersome humidifier integration:
Easiest to remove and install is S8II (Entire humidifier)
Next is Intellipap because no screws
Next is M-series - Requires tools
Sandman can't be removed

As far as integration of humidifier with unit that makes least amount of change in size,weight of the unit Sandman wins easy
Power:
Intellipap - Single cord and nice and long at 8 feet if I remember right
S8II - Single cord but could be longer
Sandman - Single cord- plugs into machine on side which is kinda stupid and needs to be longer
M-series - Sux by comparison - no doubt

Hose:
S8II - Winner, comes out the front - all the rest out the back

Software:
Easiest to understand and see cause and effect in order to make changes and most info- Encore
Second is Sandman - Cause and effect not as obvious as Encore - pretty good info
Third is Intellipap - Can't see cause and effect very well,reads AI poor and a lot of HI - runs slow as heck on Vista Home
S8II maybe ties Intellipap - Runs faster but hard to see cause and effect

Keep in mind this is at pressures of 12 and up,usually 15.

Exhale ease or options:
Sandman is the easiest to breathe out against,almost like motor stops then speeds up very fast on inhale and is loud
M-series - Many options but none as easy as Sandman
S8II - EPR i nothing fancy and easy breathe is overrated but OK
Intellipap - No options and hardest to breathe out against

YMMV

Despite what I said about the Respironics A-Flex machine, I sleep peacefully with it every night and can recommend it. The ideal machine hasn't been built yet.

[SharkBait]

Personally, I think all newbies do better at adjusting to therapy with some sort of pressure relief - Cflex, Aflex, EPR, did I miss any? To answer your question Cflex relieves on the exhale side and works with CPAP mode, Aflex relieves on both sides, but is only available in APAP mode (note an APAP can be run in CPAP mode) I used Cflex for the first month and don't think I would have done well without it then, but after I got used to therapy, I found I didn't need it. (BTW I also think newbies need the Ramp feature turned on aleast when they are starting - it starts your pressure at a lower level and lets the pressure build up over a time period. I also stopped using it once I got used to therapy)

After 3 nights I've turned ramp off. My pressure is 10 and I was ramping starting at 8 and it just kind of bugs me. I'm not real good at breathing thru my nose and I find <10 to be a bit stifling.

Of course, other's mileage will vary. And I do like the A-Flex/C-Flex modes...