On my way...

[Telle]

So I've had my diagnostic study, my titration study, and my consultation with my sleep doctor. Next up I get to deal with the DME.

My sleep doctor prefers to start you off with a CPAP, and then switch to an auto CPAP if that doesn't work out.. but he said he'd leave it up to me as to which I wanted. He also didn't really see the need for a fully data capable machine, but said I can work that out with the medical supplier. He did happen to mention that the prescription doesn't actually come from him.. he just makes a recommendation, and the doctor that initially referred me (in this case my psychiatrist) writes the actual prescription. So if the DME gives me the run-around and won't give me what I want, I guess I have to go through my psychiatrist to get a more specific prescription.

So reading on here, it seems that the general recommendation is to get an auto CPAP (APAP) with full data capability, right?

Here's some data from my sleep study:
no REM sleep
82.68 awakenings + arousals per hour
API of 70.7
6 obstructive apneas, 4 centrals, 4 mixed
276 hypopnea events

They got my API down to 3.0 during the titration study with a pressure of 16 (which is my recommended pressure).

[jasper]

Hi Telle, yes get the APAP with full data capability. You can always run it in CPAP mode if you decide to in the future. Regarding the Rx, I don't get that. The sleep doc should be able to write the prescription, and is probably better suited to do that than the referring doc. Good luck with starting your PAP journey. Let us know how it goes...

[Telle]

Thank you for your response jasper. I'm feeling very anxious about all this so it kind of helps to reach out and have someone respond.

So why exactly is an APAP preferred over a CPAP? And how would I know what to set the APAP for if all I have is the static pressure value for the CPAP?

[jabman]

It is my understanding that you want an APAP incase things change, then you won't need to get another machine. But I beleave most new APAP machines have a setting for them to be used in CPAP only mode at least mine does.

[Emilia]

Generally, the APAP range should be two below and two or three above the cpap titration number. So, if you have a static setting of 8, you set a range for 6 to 10 or 11.

[jasper]

Many, myself included prefer the APAP since it provides a lower pressure if it doesn't detect a need to suppress apneas or hypopneas. However if you set the low end pressure too far below your 90% pressure, it may take too long to reach a therapeutic level. That is one factor in determining where to set the lower limit. The other factor for me is that I just don't feel like I'm getting enough air if I set the low end too low. My 90% pressure is 14 cm, and I set my low end to 11 cm. Below that I feel as though I'm not getting enough air. My high end I set at 16 cm to cover the occasional spike. Believe it or not my prescription was written for 4 to 20 cm. Ask around the forum. I don't think many people have their limits set that wide. It would be like riding a tiger bareback (I think - since I've never tried it).

Back to the original question of APAP vs. CPAP. You need to see what works best for you. For some, the comfort of having a continuous flow (CPAP) allows them to sleep soundly, without waking every time the pressure rises. For me, I'm more comfortable maintaining a lower pressure most of the time, and having the ability to get the higher pressure only when needed. So, personal preference is a big factor. The other factor is AHI. You can try both CPAP and APAP and see what works better. Give it at least a week or two before making any changes, since there are so many other factors that come into play. If you change things night to night, you'll never get an answer.

Hope that helps a little. I'm sure others can add more based on their experiences.

[elena88]

They got my API down to 3.0 during the titration study with a pressure of 16 (which is my recommended pressure).

There is absolutely no reason not to ask for an apap, as you CAN run it in cpap mode if you want..

If you have a pressure of sixteen, which isnt exactly a low pressure, you mind find it very hard to deal with that pressure as a constant
all night long..

however, some people get used to it, and the constant pressure is preferred over a range of pressures..

My feeling is, why have it as HIGH as it has to go to prevent an obstructions ALL the time, when if you had an apap, it would just chase
after events when you needed it.. the rest of the time your body can relax and breath fairly normally..
Yes, if you set the pressure on apap a few numbers below your titration pressure, it will be able to catch your events easily..

There are also exhale relief functions on most all the new machines, so you can get a little break from breathing against the pressure..
HOw did you do in your titration? was it a struggle? Or was it easy? What machine did they use? What mask?
If it was a struggle, get an apap.. and DONT get a machine which is not fully data capapble, not just compliance info, but you want the therapy
information if you want to be a partner in your therapy..

I cant imagine that that sleep doc wants your psychiatrist to write the script for you... You no doubt will no more than he does about the different
machines, and what you want.. if he wants to work with you, and wants to give you what you want, then great..
JUST ASK FOR A THERAPY DATA CAPAPBLE EASILY DOWNLOADABLE AUTOPAP..
resmed s9 auto (I prefer this one, have had both)
or respironics system one auto A-flex

[Telle]

HOw did you do in your titration? was it a struggle? Or was it easy? What machine did they use? What mask?

I did fine during the titration. But they started it off at 4, and went up from there. I was asleep when they hit 16. I know I woke up at some point during the night for a little bit and I didn't have any problems then, but I'm not sure what the pressure setting was then.

I'm not sure what machine they used. Looking at my paperwork, it looks like it was a BiPAP, but it doesn't say which kind. I don't know the brand of the mask but it was one that goes around the nose. We were going to try the nasal pillows, but the tech was new and couldn't remember how to put that one on me.

One thing I'm curious about, is what kind of mask is best for a side sleeper? I like to lay way over on my side, almost on my stomach. During the titration study, I woke up at one point and could tell I was having leaks, and had trouble going back to sleep because no matter what position I got in, I could hear a leak. Eventually the tech came in, and she told me that if the leaks were bad enough to cause a problem it would show up on their screen and they'd come in.. so I shouldn't worry about it. This is one reason why I want a machine with full data capability.. I need to know when I'm having leaks I need to worry about and when they're so small they're not actually a problem.

[elena88]

well, we all know one night does not a trend make.. and we have seen many people fly thru a titration, only to have a terrible
struggle when they got thier cpap home..

If you WERE titrated on a bilevel, Im sure they would GIVE you a bilevel..

There are also bilevel autos, and I am looking into those.. going to do a week titration at home with one starting tomorrow..

If you get a resmed s nine, you can just fire that puppy up, and run it in auto or cpap to your hearts desire..
(with your docs blessing usually)

Also it has a mask fit function, you can try your mask on and press the button and it will go TO FULL PRESSURE for a few minutes
while you fiddle with your mask.. thats an excellent function!
Also you can read your DAILY therapy numbers, general leak, AHI and hours logged RIGHT on the screen when you get up.. OR you can pop the
little blue sd card out and stick in your computer, and download what went on breath by breath in three minutes to your computer!
AND you can post the graphs here if you have a question!

(the respironics system one auto A-flex only has weekly average AHI numbers on the screen) what the heck good is that? DUMB!
(however you can download the info but if you dont have time.. the screen is useless and very difficult to read, need a flashlight to read it)

Believe me, the more you find out, the more you will want to know what the devil is going on... and when you get it all tweeked to
perfection, ahhhhhh... relax, sit back, and know you made the right decision in wanting to be informed and proactive..

good luck!
elena

[Telle]

Looking at my paperwork some more.. the chart is labeled "BiLevel Pressure Distribution" and has a column labeled "BiPAP cm/H2O". However.. the pressures in that column are 4/4, 6/6, 8/8, etc... so I'm guessing that they technically use a BiPAP for testing but set the inhale and exhale pressures to the same amount (hence the sets of matching numbers). My doctor did mention though that since I have such a high pressure setting, I may end up having to use a BiPAP if I find I have trouble with the CPAP or APAP.

My biggest trouble with the sleep study was getting comfortable with all those wires attached to my head. The CPAP machine itself didn't bother me much. Hopefully that will continue at home

The Resmed S9 does sound sweet.. I'd love to be able to look at all the data right on the machine each morning like that.

Well, I just finally got up the nerve to call the DME. I have an appointment in their show room at noon on Friday. Here's hoping that all goes smoothly and I can get the machine I want without too much of a fuss.

[brazospearl]

Telle, read all you can here before your appointment with the DME. If they aren't willing to provide a fully data-capable autotitrating machine you need to take your business elsewhere. Also, even if they're cool with the apap, find out what the charges will be to your insurance, if they accept assignment (insurance speak for accept what Medicare pays, even if you don't have Medicare,) and exactly how much you'll be expected to pay. Many forum members have found that they pay less buying online than from a DME, so do the math before you take any equipment or sign anything. Some DME's give outstanding client care, others, not so much. Also, get written documentation of their mask policy. Some places are generous about letting you sample many mask, others aren't, and you need to be able to try LOTS of masks, because there's no way to know which mask is going to be most effective for you. Based on what you indicate in the results of your sleep study and the doctor's comments, I'm concerned that the people you're dealing with don't know exactly what would be best for you. I see a BIG red flag from a doctor who "doesn't see the need" for data. What's the plan for evaluating the effectiveness of your treatment if there isn't any data?

[Telle]

Well I have my appointment with the DME in two hours. I'm nervous as hell. I absolutely HATE conflict, and I know it's going to be a struggle to get what I want. But, I have my heart set on a Resmed S9 Autoset, and I plan to tell them that upfront and tell them to either give me that or I find a new DME. Sounds easy, right? Just gotta keep telling myself that....

[Telle]

Meeting with the DME went fairly well. They use Respironics machines at that office, but have the Resmed S9's at their other office and are willing to get one for me. It'll just take a week to ten days to get it.

The only problem is that they said that my insurance won't cover an APAP unless my prescription from the doctor says that's what I need. So now I'm trying to get ahold of my insurance and find out for sure, and then I'll probably have to try to get ahold of my doctor.

So it looks like worst case is I'll end up with a Resmed S9 Elite and have all the data access that I want and need. And I'm not 100% sold on the need for the APAP, so that wouldn't be that big of a loss to me. What I was really determined to have was the data access.