Good news for a newbie hanging in limbo!!!

I am in the frustrating, unreal place between the first PSG (10/2) and the Titration study(scheduled for 10/21). My wife suggested that I see if there is a cancelation list at the sleep center. I did and they put me on it.

I just got a call and there is an opening for tomorrow night(10/16)!!!!!! YES!!!!!!

I've been doing a ton of reading about different masks, and some are good for low pressure, and some are better for higher pressures.

My sleep center seems to be pushing the Respironics gear, so it looks like, from what I have read here, I should push for the PRO model. I am so eager to get started.

I JUST WANT TO BE ALERT AND HAVE ENERGY AGAIN!!!!

Thanks for listening!!!

Hi congahands,

Let us know how it goes. After you get your titration and before you go to the dme, check with others here regarding the exact make and model type that is software capable. Don't accept anything with a +plus in it's name.

Best to you,

Anne

Good luck with the study tomorrow night!

One thing to remember about masks is that they don't all direct the exhalation in the same direction. It can make a difference not with just the person wearing the mask, but one's partner. My wife really disliked my first mask because it blew right on her when I slept on my side facing her.

I like my Mirage Ultra, but there are others out there. Maybe the folks at the sleep clinic can give you an overview of what's available and let you pick out something that would work for you. I'm thinking that titration results will be more valid if you're wearing the same mask during the study as you will be at home. (And they'll likely give you the mask you wear during the study.)

And good luck with finding the right CPAP machine, too. I'm going through that right now, too, trying to decide on my first BiPAP.

Take care,

nath

Update after my titration night.

A LOT more happened last night than I expected. The first PSG I basically got hooked up to all the wires, woke up three times to use the bathroom, and went home.

As I sat down on the bed to get started, I casually mentioned that I had pretty high hopes that CPAP would help me a lot. She said, "Well, with numbers like yours, it certainly should." I told her that I had no idea what my numbers were, except that I wasn't bad enough for a split study, but bad enough that I didn't need the MSLT. I then told her that the sleep doctors nurse wouldn't give me any information about the actual results. Her jaw hit the floor. She was P.O.'d because they tell all their patients that the doctors office will be calling to give them their results. My doctors office just called to schedule the second test. Without specifically telling me, she let me know that my AHI was "probably" in the low end of "severe". That caught me off guard.

She went off to get a mask for me to practice with before going to bed.

First off, they gave me the mask that felt best the first night (Respironics Comfort Select) to "practice". I fell asleep with it on. I told her that I was concerned about the holders for the ball joints breaking, and she suggested that I try the Mirage Micro Nasal mask. It felt a lot better and I liked the clips over the ball joints. So, around 9:30 p.m. , off to sleep I went with the Mirage Micro at a nice comfortable 5 on the pressure. I woke up around 11:15 p.m. and I don't know what it was but the pressure sure wasn't a 5 any more. She told me I was having a little problem keeping my mouth closed and she may try a chin strap on me. Well yeah, I thought, I have to clench my jaw to keep my mouth closed.

So sometime later she woke me up enough to put the chin strap on. Ick!!!! Didn't like that much and apparently it did nothing to help me keep my lips together. So I woke up around 2:30 a.m. for the bathroom again. She told me she was going to go to a FFM. I said, "Cool! That sounds better that a chin strap." So she brought in a Mirage Quattro. That worked a lot better. I woke up at 5:45 to an aching back. I knew that sleeping on my back gave the highest pressure readings, so I "tried" to stay on my back as much as possible especially during the 3:00 a.m. REM cycle. At that point, she asked if I was done sleeping. I asked if she had enough data, and she said she did, so I got up.

At one point she left my "prescription" on the bed while she went out to check on her other patient. So, of course, I read it.

So it looks like I'll get the Remstar Pro with C-flex with a rate of 16/15, and heated humidity,a Mirage Quattro mask, the software, and the card reader.

Oh by the way, I feel much better after one night than I have in months, or maybe years.

CH

Ooops, thought I was signed in.

Sorry about that.

CH

congahands wrote:At one point she left my "prescription" on the bed while she went out to check on her other patient. So, of course, I read it.

So it looks like I'll get the Remstar Pro with C-flex with a rate of 16/15, and heated humidity,a Mirage Quattro mask, the software, and the card reader.

Good for you, spotting that!

You've definitely been doing your homework and you know what you want. The Pro machine will give full data, but you'll need to buy the software (Encore Viewer) and card reader yourself if you want to use software to download the Smart Card yourself.

If you can talk your doctor into prescribing the Respironics BiPAP Auto for you instead of just a cpap machine you'll really be ahead of the game. That machine can be set to operate just like a plain cpap (by setting it for bilevel mode with the IPAP/EPAP pressures the same) if the doctor insists that you use just "cpap" treatment.

Or, if you can talk either the doctor or the DME into the Respironics REMstar Auto with A-Flex M series machine, that one gives most people even more comfortable exhalation than just C-Flex. That machine can be set to operate exactly like the Pro CPAP, by not turning on "auto." The A-flex feature can't be used in "cpap" mode however, but the A-flex machine also has C-Flex in it, and C-Flex can be turned on.

In other words, those are two machines that might be more useful to you in the long run, especially with pressure of 15 or 16 prescribed, as is likely. That's a pretty good blast of air, and it can be nice to have a machine that gives even more relief when exhaling than C-Flex will.

But if the Pro is what you end up getting, you'll have a very good machine that will give AHI and leak info via the LCD window on the machine, and can give detailed nightly data via software.

As Anne (One Tired Puppy) said -- just don't accept any machine with "Plus" in its name...if you want to monitor your own treatment.

Sounds like you have the most important piece of the treatment puzzle in place already... a mask that suits you! That's usually the biggest problem most people have in using "cpap."

Good luck, and good sleep soon!!

IF.....they had you sleeping on your back and that's not your normal sleeping position, you may very well be able to get by with less pressure than the 15/16 that's on your Rx. (which would mean that you may not need an expensive Bi-PAP)

I was prescribed a pressure of 18 cm., but only need 10 - 12 cm. to more-than-adequately get good therapy. I've read many stories from people who end up with very different pressure needs (both ways) than what was determined from a one-night sleep study/titration.

EDIT: Another thought......in order for you to get a Bi-Level/Bi-PAP machine, you would (more than likely) have to have another titration on a bi-level machine to determine the proper pressures (IPAP and EPAP) for a different prescription.

Good luck.

Den

I never sleep on my back but I did so at the sleep study and they recommended 12cm. Since I got my auto I spend most of the night at 8cm and I haven't once gone over 10cm.

Kinda the same story here -- I'm all over: both sides, and back, and I've been having some upper back pain, which is one reason I've been moving around so much.

I was titrated at 14, as I recall, and my APAP hasn't gone over an average of 12 yet (I'm assuming I am looking at the average pressure during the usage hours, so I could very well be going higher and not know it).

I have some more news. First, thanks for the responses.

Two things that I didn't explain very well, I think. 1) I sleep in all positions, including my stomach some, although I didn't last night. From what my wife has said, I am on my back %45, left side %20, right side %30, and stomach about %5. The sleep tech said she got good readings on both sides and my back. So hopefully the numbers are okay.

2) The second thing is that I don't think I said the pressures right. 15/16 isn't a range. Does 16 with a c-flex of 1 make more sense? I interpretted that as an inhale pressure (IPAP?) of 16 and an exhale pressure (EPAP?) of 15. The tech said she tried me at 16 in and 16 out 3 seperate times, and I just couldn't handle it. I don't know if that was honest, or if that's how they get me onto a slightly better machine or not. She said something similar about humidity. I was okay on cool humidity last night but I may need heated humidity during the winter so she said I needed it now.

I just got off the phone with the DME representative. My appointment with the RT is Monday at 2:00 p.m. (BUMMER!!!!!!) I also found out what you said restedgal, about my having to buy the reader and the software, is true. The DME rep (not the RT) tried to discourage me from getting the smart card reader. She seemed to think that my reading the data off of the card with the reader erases it from the card so it can't be read by the insurance company or anyone else. It's hard for me to imagine that is true.

The other thing the DME rep said was that compliance is considered 4 hours a nights for %70 of the nights. Is that true??? That seems really low to me.

Anyway, I have 3 more nights of crappy sleep to put up with. Then the real work can begin.

Thanks for all of your help!!!!

CH

congahands wrote: The DME rep (not the RT) tried to discourage me from getting the smart card reader. She seemed to think that my reading the data off of the card with the reader erases it from the card so it can't be read by the insurance company or anyone else. It's hard for me to imagine that is true.

You *can* set it so that the software will remove the data from the card, but it doesn't automatically do it. And you don't *have* to do it.

Clueless DMEs.

congahands wrote:The DME rep (not the RT) tried to discourage me from getting the smart card reader. She seemed to think that my reading the data off of the card with the reader erases it from the card so it can't be read by the insurance company or anyone else. It's hard for me to imagine that is true.

The DME is correct about the card being automatically erased each time it's downloaded if....

1. If Encore Pro software is being used (that's the software a DME would be using)
and
2. If a setting in Encore Pro has not been changed to not erase it.

Here's a thread about how to set Encore Pro to not erase the data:
viewtopic.php?p=286679#p286679

If Encore Viewer software is being used (software the DME probably never heard of and wouldn't be using in a DME office) the card is NOT erased. Encore Viewer software was created by Respironics FOR cpap users. Encore Viewer software will not erase the card no matter how many times you download it.

congahands wrote:The other thing the DME rep said was that compliance is considered 4 hours a nights for %70 of the nights. Is that true??? That seems really low to me.

Yes, that's true as far as insurance requirements for "compliance" go. You're right...that's too low to be "good treatment", but hey, it's a good thing the "compliance" bar is set that low. A lot of machines would be taken away from people who are struggling in the beginning months to get used to using the machine and mask.

The "compliance" requirement doesn't mean that all a person needs to do is use the machine for 4 hours and then take the mask off the rest of the night, and skip even using the machine at all for a couple of days during the week. It just means that's the minimum amount of time a person has to use the machine for insurance to continue paying for it. Insurance companies don't want to pay monthly rental for a machine that's just sitting in a closet.

People who really want to get good treatment will use their machine for every sleeping moment, including naps. People should use the machine EVERY time, all the time, when they sleep...not just "enough" to meet a minimum requirement. I'd hope a DME would explain that rather than simply throw out a statement about "4 hours a night" as being enough to be "compliant." I can see how many people (not you, conga) could misunderstand that to mean that four hours a night was enough to "treat" OSA.

Hey rested gal, I wonder if my DME would be interested in hiring me to adjust their Encore Pro software. On an IT consulting basis of course. $200/hour 4 hour minimum. Or maybe they could just give an a Respironics Auto for barter....... Hmm.........

LOL!!!!!!

congahands wrote:Hey rested gal, I wonder if my DME would be interested in hiring me to adjust their Encore Pro software. On an IT consulting basis of course. $200/hour 4 hour minimum. Or maybe they could just give an a Respironics Auto for barter....... Hmm.........

LOL!!!!!!

I remember them trying to make me sleep on my back. I explained that I don't and can't fall asleep on my back. The video showed differently