What is all this talk of C Flex and Auto

Sleepless on LI · Post by **Sleepless on LI** » Mon May 30, 2005 2:32 pm

I am a total newbie to this and am getting my prescription tomorrow (I pray) for my machine. I don't even know what an AHI is or what my pressure or titration is going to be. What does C Flex and Auto refer to and are there things I need to know about choosing the right machine? So far, I was leaning towards the Oracle as the device of choice as far as the mask, but the machines are a mystery to me. And all the terms I am hearing are totally confusing. It's horrible that they hit you when you're at your lowest, exhausted and feeling like you can't even deal with the normal daily activities, let alone dealing with all this new and vital information you need to know before you make a decision that will effect one the most important aspects of your future, the productivity of your sleep and getting your health back. I would appreciate any information anyone is willing to provide. And thanks in advance.

LDuyer · Post by **LDuyer** » Mon May 30, 2005 4:18 pm

There is some great information about these in different topics, recent ones, even. Here are a couple:

http://cpaptalk.com/viewtopic.php?t=3000

http://cpaptalk.com/viewtopic.php?t=3016

You will also note that under your post there is a list of keywords. If you see these keywords, you can click on them and they will link you to more information. You can also use the search feature to find more posts about these topics.

Linda

ahujudybear · Post by **ahujudybear** » Mon May 30, 2005 4:21 pm

Sleepless?

I am new and learning here too. Ypou need to take the time to read through the various threads here and go to the CPAPopedia and to the lists of products referenced in the messages. It's a lot of reading (and I haven't done 1/4 of it so far!) but it is well worth it. People here like Christine and (I can't remember... is it "rested gal"???) are very thorough in their replies and include many references where you can get even more information.

They are the best!!!

But how is it that you are getting an Rx when you are so uninformed? You need to ask more questions of your doctors. How many sleep studies have you had so far? What kinds of machines have you tried using? What kind of masks? Before you settle on a final Rx, you need to find out what works best for you - and why.

Good luck in your searching!

- JB

ozij · Post by **ozij** » Mon May 30, 2005 9:37 pm

Click on all those unfamiliar terms colored blue. Browse the CPAPopedia (blue book above the thread list)Try http://www.talkaboutsleep.com which also has lots of info.
O.

rested gal · Post by **rested gal** » Mon May 30, 2005 9:50 pm

I know how confusing it can all seem at first. The message boards are lifesavers. Keep reading all the topics and it will eventually be more clear. The doctors and health care professionals rarely have the time to explain things much. The message board will make everything easier for you.

There's a "Search" button at the upper left of this page. Good way to read more about specific things you wonder about. Do keep asking questions. We were all new to this at the beginning!

Sleepless on LI · Post by **Sleepless on LI** » Tue May 31, 2005 5:19 am

But how is it that you are getting an Rx when you are so uninformed? You need to ask more questions of your doctors. How many sleep studies have you had so far? What kinds of machines have you tried using? What kind of masks? Before you settle on a final Rx, you need to find out what works best for you - and why.

How can I get an RX when I am so uninformed? Is that a real question? Am I misunderstanding what you're saying? I am not the polysonographer, nor the doctor. I do not go through medical school or specialized training, they do. I do not write the prescrption, I receive one, based on their specialized training. They tell me what is wrong and are supposed to be my lifelines. I am here trying as best I can, though the help of others like yourself, to learn as much as I can before I make that final decision today. I didn't come here to be insulted, especially with a line like that.

I have NOT had any machines yet, nor any masks, as I haven't received my prescription yet. I am supposed to receive it today. I have had two sleep studies done, the latter being the CPAP portion, and hated both masks they had on me. One cut the sides of my nose and the other cut off circulation to the bottom lip and caused my teeth to dig into the bottom of my lower lip. I have not spoken with my doctor yet who is going to write this prescription as she is awaiting the final report today from the chief polysonographer. So to insinuate I am the back end of a donkey is a bit insulting. I an totally new to this, exhausted and asking questions. Sorry to sound like such a bother!

MartiniLover · Post by **MartiniLover** » Tue May 31, 2005 6:07 am

Let me guess, you noticed that you were having mood swings when the Doctor decided to have a sleep study done because you had so much rage.

Sleepless on LI · Post by **Sleepless on LI** » Tue May 31, 2005 6:24 am

LOL!!! You are funny, I have to say. Thanks for the laugh.
No, not really. I am too tired to have mood swings. I was just a bit put off by the fact that this is the place where I thought it was okay to ask questions to get armed with firsthand knowlege to discuss with your doctor who, in my estimation, won't know too much about this as she is a PCP. I think the DME will have that knowlege, but it will be once I have a prescription in hand. I was a bit put off by that question, virtually insinuating I was a jack***, which I am anything but. I actually am quite educated and take a great interest in any medical condition I end up with and try to do my research. This person made me out to be a person going blindly into this, which is so not the case, and suggesting I am not going to know anything before I have a prescription which is why I'm here asking the questions. But you are quite humourous and I thank you for the laugh. Sweet dreams!

ahujudybear · Post by **ahujudybear** » Tue May 31, 2005 6:32 am

Lori?

(?Sorry i struck a nerve there. Not intended at all. ) )

Maybe it's your doctor who is doing things backwards? Or maybe she didn't explain her procedure well enough to you?

My pulmonologist wrote a Rx for me to try various machines and masks, with a suggested setting of 10/4 or 5. I told the Respiratory Therapist who came to explain and set up the machines, that I was told by other BiPAP user friends of mine (on another list) that I should have an EPAP setting no higher than 3, best around 2, so she set the machine at 10/2. I also have to have a pulse oximetry test done, but not until I have been using one of these machines (I'm on my third different BiPAP machine) for about a month, she said. In the mean time my Ear, Nose and Throat Dr. is doing sleep studies to determine what BiPAP levels are best for me, what my "normal" sleep is like, and the one coming up Monday will be to sample blood gasses periodically while I sleep (looking for CO2 build-up.)

Now, all this is being done BEFORE they write/decide on what my final Rx will be for. I am a very involved and proactive person in these decisions, as I think are most of us who come to these forums for answers - including yourself.

So I'm wondering whether your doctor intends to do all of this with you before writing a final Rx? You may just be at the beginning of your adventure.

- JB

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap

Sleepless on LI · Post by **Sleepless on LI** » Tue May 31, 2005 7:15 am

Thanks for the reply. I just felt that you thought I wasn't doing anything before I got this prescription, which isn't the case. I am trying my best to learn whatever I can before I make the plunge. However, after reading what you are going through, I can't help but think that my situation is not being handled correctly. I was the one who suggested going for a sleep study after my snoring, lack of sleep and borderline high BP at a young age and out of nowhere surfaced. I hadn't slept through the night in literally years, my husband was leaving the room at night because of my snoring and I was now, in my early forties, on BP meds., which I fought until my doctor threatened I wouldn't see my son graduate college, so I gave in. But finally I suggested to her I go for a study and she agreed. She's usually a great diagnostician, but I fear a lot of doctors are not very well educated in this field yet, and perhaps she is one of them.
Anyway, she sent me to the place they deal with, who came back with the diagnosis of OSA/hyopnea and PLMD and gave me a second CPAP study. Today is the day they are supposed to be sending the final report to my doctor who they said will write the script for the machine. Perhaps at that point they will steer me to the DME who will give me the advice I need. I feel very lost and was looking for the answers to help me on this site. When you asked how I could get a prescription being so uninformed when, in fact, I was here looking to become more informed, I guess I got a bit defensive. I apologize. Thanks for the reply. Hopefully when all is said and done, they will do enough for me that I will get my sleep back and my BP and life will return to normal.

ahujudybear · Post by **ahujudybear** » Tue May 31, 2005 7:40 am

Had to edit this.... something fell out of the message!!!

Interesting difference in doctors.....

I found a GP (didn't have one) because my co-worker said I really needed to do something about the high blood ressure. He all but IGNORED the high BP, per se, but sent me to a pulmonologist! He said that the poor quality of sleep could be causing the high BP. I had to go back into his office when I remembered the high BP Rx I had come for. He reluctantly gave me one. Since using the BiPAP (about a month or so) my BP has dropped from 160/90 - with RX - to 130/82 (i see Dr's almost every week right now, so it gets checked a lot - at church too. We have screening each Sunday.)

- JB

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CPAPopedia Keywords Contained In This Post (Click For Definition): bipap

rested gal · Post by **rested gal** » Tue May 31, 2005 8:50 am

Sleepless on LI, I think some people are lucky to have a doctor and a DME (home health care equipment provider) who are savvy about "sleep medicine" and are very cooperative about suggestions from patients.

Many people have the misfortune to be in the hands of doctors who got into "sleep" because it's an easy, lucrative side business for them. Doctors who take little interest in staying abreast of the latest advances in equipment. Doctors who flip through a stack of sleep study reports, glancing only at the bottom line to see what pressure the sleep tech recommends from the study, and whether the sleep tech used straight cpap or bi-level. Bingo.

The doctor puts his/her expensive magic signature on an Rx for whatever the sleep tech came up with. Probably a good thing, actually, since I've got a hunch that most sleep techs know more about what's "right" for the patients than the sleep-side-business doctors do, anyway.

I know that sounds cynical. I'm sure there are doctors who do take a real interest in all this. But a good many are simply too busy churning patients in and out. Even the most well-meaning, better doctors often don't have time to really explain much -- if they understand it themselves, especially when it comes to different kinds of machines.

You can click this link for a long topic about doctors and autopaps. Will arm you a bit if your doctor happens to be anti-autopap:

Feb 19, 2005 subject: "Sleep Doctor" doesn't like autopaps

Thus, the message boards. Where people can often find better information than they'll get from some doctors and most DME's. The doctor usually leaves all the decisions about the nuts and bolts of treatment (machine and mask) up to the DME. The DME usually selects for you the stuff they can make the most profit on. Not surprising. They are in business, trying to make money. They are not the ones wearing a mask all night, every night, or having a machine blowing air straight at them.

You go into this believing that the health care professionals have your best interests at heart and will be giving you the best, most comfortable things for your treatment. Not necessarily. Just because the DME says, "This is our most popular." Or, "This is what the doctor wants you to have." Or, "This is the best fit for you."....it ain't necessarily so.

I'm not a doctor. I'm not in the health care field at all. I know nothing about what turned up in your sleep study or any other medical conditions you might have. I remember well how confusing it was to read about so many different machines and masks - and their easy to confuse similar names. It can be daunting at first, but you obviously are a person who wants to be pro-active about your treatment. The problem for everyone is, will the doctor or DME really steer us right?

That said, here's exactly what I'd recommend to get at the start... renting the machine for awhile, if possible, to be sure it suits you before buying...you might end up wanting to try a different brand or different type of machine.

Respironics REMstar Auto with C-Flex and heated humidifier. I'd have the range of pressure for the machine set at 7 cmH20 for the low pressure and 2 cmH2O above your single prescribed pressure for the high. I'd want C-Flex set at "3" for the most pressure drop relief each time I exhaled.

ResMed Swift nasal pillows mask, making sure they give you ALL THREE SIZES of pillows that are supposed to come with it...not just the one size they say "fits" you. (That's not my personal favorite mask - I like the Breeze/nasal pillows, Aura/nasal pillows, and Activa (nasal mask, covers the nose) better, but the Swift works very well for many people straight out of the box.)

This next thing will sound like "too much" to buy at the beginning, especially before you're sure that that particular machine will suit you, but I'd get this anyway:

The software (Encore Pro) and the card reader. You don't have to have a prescription at all to buy the software/card reader from an online store like cpap.com. It's expensive - almost $200. You can then get data from the "smart card" which comes with the Respironics autopap...see your own overnight results on your own computer each morning. Much like getting a look at a mini sleep study of your own, at home, every night.

Being able to see your own data any time you wish can be helpful in treatment decisions, whether you take up the reins yourself as many of us do, or as information you'll have for consultations with your doctor.

If the Respironics Auto with C-Flex turned out to not suit you (suits most people fine), and you wanted to try a different machine, you could always sell the software/card reader to someone else, just by posting that it was for sale.

Of course you could use the machine without even having the software/card reader for it. To me, that's like flying blind, though. I want to see, the very next morning, what happened while a machine was treating me during my sleep.

Or, you could have the DME download the data from the smart card. I would not want to rely on (or wait for) the DME or the doctor to look at the data. If they even bothered to do that. I would want to see my own data myself, right when I wanted to see it - the very next morning....not wait for days or weeks to hear what they thought about it (again, if they even understood it.) Any questions I might have about the data, I'd ask them right here on the message board. In my opinion, there are people on this message board who understand how autopaps work and what the data means far better than most DMEs and most doctors.

So. There are some practical first-things-to-try recommendations from one person. The battle to convince the doctor and DME to let you have those (or any) specific things right from the get-go, and the battle to get insurance to pay for them is another matter. Insurance isn't going to pay for software. DMEs don't sell it. Software/card reader would be your own expense, bought online, if you choose to get that, too.
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My disclaimer: I'm not a doctor, nor have I ever worked in the health care field. Those are just my personal opinions. A mask or machine I love/hate could be completely the opposite for others. Finding suitable equipment can be an expensive trial and error experience.

unclebob · Post by **unclebob** » Tue May 31, 2005 9:45 am

Hi rested gal,

Your post was wonderful!!

It should be mandatory reading, including the link, for all new xPAPers.

Viewers on this forum are indeed lucky to have your thoughtful and informative contributions. Any way we could get this printed up and sent to MD's, DME's and apniacs?

Thank you rested gal!

Bob F

tomjax · Post by **tomjax** » Tue May 31, 2005 3:19 pm

Your level of being uninformed is probably about that of more than 95 pct here when we were at the place you are.

There is lots to learn and it cannot be done in a day or two or even a month or two.
It is a continuing process and you continue to learn.
Compare it to that percentage of knowledge you now have to that level you had when you finished school. I guess 80 pct of what I know is what I have learned after college. Maybe more.

Take your time and start reading past forums and look for other places for info.

Patience is the key

Sleepless on LI · Post by **Sleepless on LI** » Tue May 31, 2005 4:17 pm

Thank you for your encouragement. I am constantly reading whatever I can on this site to get as much info as I can. Today I found out I have a setting of 10 for my machine, which, from what I hear, is not that bad. I have also been told to get heated humidification, which my doctor agreed to put on the prescription. Now the mask...ah, the mask. Decisions, decisions, decisions!!! If only I were dreaming and I'd wake up from all of this...imagine wanting to wake up from a dream???

What is all this talk of C Flex and Auto