Prodigal CPAP son returns ...

[spc2005]

Hello Everyone, I'm new to this forum after stumbling upon it via a Google search for CPAP masks. To make a very long story short, I was diagnosed with OSA maybe three years ago after an initial sleep study. I did not have a subsequent study to set the pressure (titration?) that I would need. I just went to a med supply place here locally that the sleep disorder center sent me to and they provided me with a CPAP unit and a mask ... I don't know what pressure they set the machine for because I had never worn a CPAP before ... I'm assuming they guessed at it? Anyway, I tried diligently to use the unit for several months and then gave up on it all together. I couldn't find a mask that fit me correctly and I had a lot of leakage. In addition, I had a ton of the bloating/gas problem that I've read many of you have experienced as well. All this was just too much for me and I banished the CPAP machine and the various masks I had tried to the closet. They have been there ever since.

I am just now getting back around to giving it all another shot. I have to do something because the apnea isn't getting any better on it's own ... I am scheduled for another sleep study this Sunday night to set my titration. After I have that, I intent to get a better CPAP unit and mask ... I don't know what or how yet. This all leaves me with several questions, however. Any assistance or advice that any of you with more experience or knowledge could provide me with would be very much appreciated!

Do I need to undergo another entire sleep study to determine my titration level IF:
1. I end up getting an APAP machine (I'm thinking this might help the bloating issue)?
2. Why didn't they titrate me the first time? These sleep studies are expensive and I feel like I shouldn't have to do this twice! Am I wrong?

Will I have to get a new prescription, after this second study, to get a APAP machine?

How likely is it that I can convince the doctor to give me such a prescription? Will the previous bloating complaint be enough to convince him?

If I end up ordering a unit and new mask from cpap.com, does insurance cover this ...even partially? How do I find out?

I'm sorry if these questions have been answered in other posts ... I've searched what info I could, but I didn't find much that addresses my particular slant on all of this.

Bottom line, I have been off of any type of therapy for almost two years now. I know I need to get back on it, but I can't go through what I went through before. I had such high hopes ... I thought it would be a great improvement ... It was, instead, a nightmare. I don't want to go through that kind of disappointment again.

I could say more, but this is already turning into a book!

Thank you ahead of time to anyone who can help/advise me!

- Shawn

[neversleeps]

Do I need to undergo another entire sleep study to determine my titration level IF:
1. I end up getting an APAP machine (I'm thinking this might help the bloating issue)?
2. Why didn't they titrate me the first time? These sleep studies are expensive and I feel like I shouldn't have to do this twice! Am I wrong?

IMHO, another PSG is not a bad idea, especially since it has been 3 years, and especially if you have insurance that will cover it. The test determines more than just OSA (e.g. PLM, oxygen desats). Do you still have a copy of your original PSG results?

I don't know why they never scheduled a titration study followup. No, you shouldn't have to do it twice and yes, it is unconscionable that they guessed a pressure for you. That being said, in the past 3 years your results may very well be different from the first study you had. If you have garden-variety OSA and no extenuating health issues, then IMHO an APAP would be fine to use to conduct self-titration experiments to find your optimum pressure range to treat your apnea. You would, of course, need to purchase the software to be able to make such a determination.

Will an auto help with aerophagia? Some say it helps tremendously, some don't, and some have found they just plain don't find it (aerophagia) to be an issue after a period of adaptation. (It might benefit you to use the search function located at the top of this page regarding this issue. For keyword, enter: aerophagia.)

It would help to know the pressure you were using 3 years ago. Is there any way you can call someone and find out what is was? Perhaps you had a relatively high pressure (which, by the way, is not at all related to the severity of your OSA) and you could benefit from pressure reduction on exhalation (such as the C-Flex feature on the Respironics REMstar Auto, or the EPR feature on the new ResMed Auto), or even a Bilevel machine that has a set reduced setting for exhalation. (Bilevel can now be purchased in an auto too! See cpap.com for the Respironics Auto BiPAP with BiFlex.)

Will I have to get a new prescription, after this second study, to get a APAP machine?

How likely is it that I can convince the doctor to give me such a prescription? Will the previous bloating complaint be enough to convince him?

Here is a thread you should read about this very subject:

Diagnosed, Prescribed, Confused

If you don't end up getting an auto machine, a straight cpap machine THAT HAS ACCOMPANYING SOFTWARE (GIVING MORE THAN JUST COMPLIANCE DATA) is perfectly adequate IMHO.

If I end up ordering a unit and new mask from cpap.com, does insurance cover this ...even partially? How do I find out?

Many people have ordered through cpap.com and it has been covered by their insurance. Contact:

billmyinsurance.com

They are a subsidiary of cpap.com and will work with you and your insurance company to find out what is covered.

cpap.com has excellent prices that are MUCH, MUCH lower than going through your local DME. Also, they deliver so fast, your head will spin! I have only good things to say about them based on my own personal experience.

What masks have you tried? Have you tried the ResMed Activa, the Puritan Bennett Breeze, or the ResMed Swift? (These are my personal favorites, but what I find works great, you may find does not.) The correct mask for your particular facial structure is critical. You can have the best machine and software money can buy, but if your mask is leaky and uncomfortable it's all for naught.

Hang in there! The very fact that you're giving this another go is a testament to your desire to improve your health, both currently and in the future. There are so many knowledgable people on this forum who have experienced the exact same frustrations you have... and all are here to offer their help in any way they can!

[tomjax]

You walked in and they sold you a cpap???

this is about the strangest thing I have ever heard in 7+ years of PAP forums.

I cannot imagine ANY DME company doing this unless it is the one Homer SImpson works at.
This is NOT the way to start a PAP life.
Maybe if it was an APAP with a rather wide range, it would be ok.
But then again, I would imagine a setting of about 12 would cover the majority of people.
This is confusing. Please let us know more.

Is there a full moon out?

[spc2005]

Hi Tomjax,

Yes, like I said I had the initial sleep study and they did not try me on the Cpap that night. The first time a ever laid eyes on one was when I went to the DME place and took one home with me. I don't know what titration setting they programmed in ... the machine is an Invacare Polaris. I can only assume they guessed at the setting, since no titration tests were done on me at all. Wierd ... ? Yeah, I thought so too, but this is what happened.

I don't recall talking to Homer ... I agree, though, that this is no way to start off with CPAP therapy!

[limpy]

The polaris is a junker made by a company, invacare, that makes a ton of wheelchairs and tried to "break in" to the CPAP business, but fell on its bum.

You got some good advice in previous posts. The very cut and dry version of what you should do, in my NOT NOT NOT A DOCTOR opinion, is this:

Find your old Rx, buy the best equipment with it, monitor your results with software, use cpaptalk to explain your numbers and help you track results/tweak equipment.

Here's the longer version

1. Find the old Rx. They do not expire and CPAP Rx's are accepted for APAPS.

2. Get yourself the best equipment, try billmyinsurance.com first. If they can not help you, they'll refer you to cpap.com, which is a good place to be. Here's my limpy-list of stuff people tend to favor, and stuff that is best for newbies to start with:

Get yourself an activa mask (it has the highest newbie success rate)

https://www.cpap.com/productpage/resmed ... allow.html

Get yourself either the 420E if you travel a lot or the Auto with C-Flex if you don't. A BiPAP Auto was suggested previously, but you have to have a BiPAP Rx for that, which means another sleep study. Why do the second sleep study when an APAP with software will do it for you? You have an Rx, cut out the middle man!!

420E w/ humidifier and software

https://www.cpap.com/productpage/1541

Auto w/ C-Flex w/ humidifier

https://www.cpap.com/productpage/respir ... ifier.html

Software and card reader if you get the Auto w/ C-flex

https://www.cpap.com/productpage/respir ... eader.html

Free download MyEncore add on if you get the Auto w/ C-flex software

myencore.php

3. Install that software and card reader, THEN install MyEncore, then use the card reader to get your nightly results, then paste the results into cpaptalk and ask for opinions. Also, tell us about any equipment troubles you are having

Sorry for the long post, hang in there!

[spc2005]

Thank you to everyone who has posted a response to me so far ... the informationis extremely valuable to me and I appreciate it so much. I am going to make some calls today, get my hands on my original RX and then see if I can order a new unit. Based on everything I've read to this point, I think I'll go with the Respironics APAP. Here are two lingering questions, however:

1. If I go ahead and purchase this APAP machine, is there any good reason why I should still consider going through the second sleep study this Sunday night? How important is it for the techs to tell me what my titration "number" is?

2. Should I check with my DME to see if they have this unit available, or should I just bypass them altogether and buy it from cpap.com?

I can afford the machine, this isn't the issue ... but I don't want to get ripped off either. I'm just thinking in terms of how I might get it the quickest. I need it BAD!

Again, thank you neversleeps, tomjax, and limpy for all your help and your willingness to write such detailed responses!

[Colorado Jan]

I would think that you should still have your sleep study done. After all, a sleep study gives more information than just your titration, such as oxygen saturation and periodic limb movements, etc. And often you can look at different masks, etc., while you are there.

And I would go ahead and check with your DME, just for fun, to see what brands of machines they carry. For example, my DME doesn't carry respironics. They only carry DeVilbiss and Puritan Bennett.

Then, if your DME also doesn't carry Respironics, you can decide how important that is to you and whether to go with them or direct purchase.

You also might want to just call your insurance company, to see if you can buy your equipment from CPAP.com and then be reimbursed. I think some people on this forum have done that and been reimbursed 80 percent.

Just my thoughts on the subject. Good luck, you are on your way to feeling better!

Jan in Colo.

[spc2005]

Hi,

I have been busy checking with various entities today. I submitted my info on billmyinsurance.com and got a call back this afternoon. They told me that if I already have a CPAP through a DME, which I do, my insurance won't cover anything on another one for 5 years. I was really disappointed by this. Looks like I'll have to pay cash for the entire thing if I want to get a new one, or I'm stuck with this Invacare machine. I'm really kind of bummed about this.

I also talked to a tech at the sleep study office today ... he recommended I go ahead with the second sleep study this Sunday and tried to argue against an "APAP" type of machine ... said they're not good because the titration level is not consistently at the level that's optimal. I'm not convinced he's right about that, and I still want the Respironics unit for sure ... I do think, however, that I will go ahead with the sleep study to finally get titration levels, etc ...

Thanks again to everyone for their help and concern. By the way, I also dug through the masks I already have and it turns out I have a ResMed Ultra Mirage mask among them ... so, I think I'll probably start out with this one when I do get a new machine. I'm hoping that the problems I used to have were more related to the Invacare CPAP machine than to the mask ... ...

Slowly, I'm getting there. The big challenge is staying positive about all of this. It's a hassle, but if it works ... and I can finally feel better ... it's worth it.

[neversleeps]

1. If I go ahead and purchase this APAP machine, is there any good reason why I should still consider going through the second sleep study this Sunday night? How important is it for the techs to tell me what my titration "number" is?

I agree with Jan. If this PSG is covered by insurance, I would definitely go through with another study. It would be good to know what else you have going on (if anything) besides OSA.

As far as the actual titration.... Yes, using an auto and conducting your own self-titration studies would work just fine. However, since you're going to be there anyway for the sleep study, you might as well stick around for the titration part of the night. Jan's right, it will give you an opportunity to try out as many masks as they'll let you. Also, it will give you a good starting point for the range you'll initially try with your new auto. (I'd suggest you don't start out with the machine wide open at 4-20cms, but narrow the range, perhaps starting out 1 or 2cms lower than your official titrated pressure and capping it at 2 or 3cms above, just to get things rolling and see where you find you spend most of your night with the least resultant apnea events.)

2. Should I check with my DME to see if they have this unit available, or should I just bypass them altogether and buy it from cpap.com?

I'd personally bypass the DME altogether. They are an unnecessary and expensive middleman. With cpap.com you won't have to wait to get whatever machine you want. On many occasions they have sent out my order the same day I placed it online.

[neversleeps]

I also talked to a tech at the sleep study office today.... he tried to argue against an "APAP" type of machine ... said they're not good because the titration level is not consistently at the level that's optimal. I'm not convinced he's right about that...

He's not right about that. Period.