Relative newbie, have a few questions :)

Hi everyone. Thanks in advance for any help! I'm sorry for the frustration in this post...the CPAP itself is ok, the DME I am quite frustrated with.

I guess I'll list my questions:
1) I switch insurances from one BCBS plan to another BCBS plan in a month, can I use this to make a clean break with my current DME and switch to another one? My current company has been incredibly...well...I've been going to them since I was 12 for my orthotics and I'm almost 26, but they can't manage to send me filters and it's been nearly 3 months. They can't seem to fit me right for a mask or are apparently interested in trying either, even though I told them I was willing to self-pay for a different style if that's what it took! (Engineer living with Mom and Dad a bit longer while this medical stuff is sorted enough I can get some budgeting to move out) They also don't have a way to fully lie down to check for mask fit, just a recliner chair. My jaw drops a decent bit back while I lie down, and I use a biteguard for teeth grinding... Also, their hours are worse than another local/regional DME...and to top it off, they gave me a mask that didn't fit and a s9 escape brick so I can't even effectively troubleshoot! I asked the Respiratory Therapist if I could get the Elite if my doctor wrote the script, he told me they don't carry it at all. And when I asked to speak with the manager about this to try to get things sorted I get kicked to VM on the phone and in person I got told they're not in on a few occasions. I want to switch as a result. I really don't like handing money hand-over-fist when they won't work with me...I'll still work with them for my orthotics, but the CPAP branch has some fail there. : /

I got my compliance done in terms of hours like a rock star, at least. Leaky mask and all...averaging 8.1 hours when I wasn't working, still averaging 7 hours right now that I am working again, and I managed to get the hours right where they wanted from the start...I am still getting fairly fragmented sleep though since I'm getting enough leaking with the FFM or wind up waking up so stuffed I can't breathe with the Swift sometimes. At least the headaches are much much better, I think that means it's at least on the right track, right?

2) Anyone a side sleeper and try the Mirage Liberty? They started me on a Quattro Air that I can stick a finger between my jaw and where the pillowy cushion ends at the bottom lip on the small, the remzzz's didn't really help as a result...I finally was like hey, between the fact that it REALLY doesn't fit and the fact that it was triggering my anxiety a lot, they did after a couple of in-person-campout visits let me take home a sample Swift FX that is great unless my sinuses clog and I start mouth breathing as a result. Which is often right now with all these colds and things running around at work : / It seems like at least on paper the Liberty is exactly what I want, but before I have another go-round with the DME I have now if I'm stuck with them...I'd like to try to figure this out. This actual sleep thing is pretty neat when I can get it!

3) I've now managed to pull on the hose enough in my sleep it's fallen off the bookshelf next to my bed and went upside down causing lots of rainout twice in the last 3 weeks. Are there longer slimline hoses? Or would attaching Velcro to the bottom be ok or something? It really doesn't seem like it's good for the machine to get water in it like that I'm open to other ideas too. I've been a sleep-flailer all my life, apparently now that I'm more used to the mask it's returning... And so have the headaches a bit, but not nearly as bad as the other night when I was apparently so overtired I fell asleep straight after work with all the lights on and no mask. ^^; I tried moving it from the top (it's a 2 bookshelf-high shelf) to the upper shelf but it seems to not have really made much difference in the tipping...

4) My stomach feels really really full in the mornings, and it feels tighter the longer I sleep. Sometimes if I sleep in I end up un-masking for a few to try to let the fullness subside a bit. Is this a mask not-fitting-right-related thing or a pressure thing? I see my sleep doc early February (soonest I could make work as a new employee with his schedule) and I can suck it up in the meantime, but I'm trying to make sure I get concerns that are really important for the doctor to know about.

5) Anyone's ears get stuck half popped? The last few days with all the storms coming through seem to be making this really really bad compared to my norm...have to swallow a few times once the mask is off to be able to hear normally. Not sure if this is normal (due to the pressure shifts, I get this real bad on airplanes too) or not.

Thanks again anyone who tries to help! I've been lurking here since the sleep study, and this place really helped quell a lot of anxiety of what to expect, I just wasn't expecting this much fuss and hassle (and cell minutes used!) on the DME's behalf... some direction on how to get this rolling again would be great.

Oh my! I don't have any answers but I just have to say that I could have written this! I'm anxious to see the answers you get on your questions. Thank you for posting!

SleepyStar wrote: 1) I switch insurances from one BCBS plan to another BCBS plan in a month, can I use this to make a clean break with my current DME and switch to another one?

Hi SleepyStar -- Yes, you can use any DME that your new BCBS plan contracts with. Call BCBS for a list of DMEs they're contracted with.

At least the headaches are much much better, I think that means it's at least on the right track, right?

Yes, especially since you have no data to look at. However, I wouldn't give up on your idea of getting the doc to write a new prescription for a data capable machine, since your sleep is still fragmented. One of the things you will read over and over again here on the forum is to NEVER believe what the DME is telling you about what they can and cannot or will or will not sell you. It's worth a try.

2) Anyone a side sleeper and try the Mirage Liberty?

Can't help with the mask question as I'm not familiar with the ones you mentioned. But lots of people here will come along with some ideas.

3) Are there longer slimline hoses? Or would attaching Velcro to the bottom be ok or something?

Our forum host cpap.com does sell longer hoses. Check out their website: https://www.cpap.com.
To avoid rainout -- besides not letting the machine fall on the floor -- it's best to have your machine sitting at a lower level than your head so that any condensation in the hose runs back down toward the machine rather than into your mask. Also consider the Climateline hose which is made by ResMed for your machine (also works with the Elite and all the S9 machines). The heated hose really helps with eliminating/minimizing rainout -- I think it only comes in the 6 ft length, but that brings us to the idea of a hose management system that "secures" the hose to the headboard or wall in a way that you can move around without pulling the machine over. I don't move an inch so haven't had this problem, but other folks have come up with some great ways to secure the hose and will be able to give you some ideas.

4) My stomach feels really really full in the mornings, and it feels tighter the longer I sleep. Sometimes if I sleep in I end up un-masking for a few to try to let the fullness subside a bit. Is this a mask not-fitting-right-related thing or a pressure thing?

Aerophagia. Swallowing air. A common problem for newbies and "relative" newbies. Some of us have figured out what sleeping position works best to avoid this, and also there's a way many of us, me included, have trained ourselves to sleep with the tongue pressed up on the roof of the mouth -- this keeps the air going down the airway and not into your GI tract. For some sleeping with the neck a bit extended helps cut down the aerophagia. Others find the opposite, tucking the chin down toward the chest a bit does the trick. It's a matter of experimentation.

And yes higher pressures can mean more aerophagia for some. Using the exhale pressure relief (EPR) feature on your machine can help, and in some cases a switch to a bilevel machine solves the problem when all else has failed (bilevel allows for even greater differential between the inhale and exhale pressures). You also asked about whether the mask is involved -- I'm not sure but I'd guess that if you're struggling with mask fit and leaking/mouth opening you might be more susceptible to swallowing air too.

5) Anyone's ears get stuck half popped?

Plane landings are excruciating for me too but fortunately my cpap hasn't caused problems with my ears -- just my eyes.

I hope this helps a little. You're actually doing really well with this crazy therapy for the weeny amount of help you've gotten from your DME! Keep asking questions because this is an incredibly helpful community.

*bump*
As I type this, at least 8 of those old polls and threads are helping to float this newbie's first post down and almost off the first page. Just want to make sure others see the OP's questions so giving it a bump.

EnumclawGramma wrote:Oh my! I don't have any answers but I just have to say that I could have written this! I'm anxious to see the answers you get on your questions. Thank you for posting!

Hope you have gotten some good answers so far! I have

@Kaiasgram: Thank you for answering what you could! It really helps a lot! Wall of text, incoming!

Ok, so I think it's time to call them up and see what's up...I'm still on the rental for the machine I have. I called my current DME and they were able to tell me that they could get me a 9 foot hose, but they also told me my escape was "fully data capable". To which I was like well, where's the frownyface from all the leaks whenever I try my Quattro Air that the manual says is in the elite and the autoset, but not my escape, never mind all the nice hard numbers that I really do better when I have? She got....really really quiet then for a moment and asked if I had any other questions. Wouldn't answer the question I had of "if my doctor writes me a script for the elite can they get it for me." Guessing that that's either a "we don't wanna" or "we just don't" based on that "the one you have is fully data capable!" line... . I asked if they had a location closer to work so I could try masks before that, she was able to tell me that at least. (have an hour's drive between work and home...) Hoping the RT's there can at least help with the mask fit.

I'm an engineer. I want the delicious tasty numbers and metrics. Sleepyhead looks like a blast to play with actually.

I did get news on my filters though...they went from Tennessee (where the big warehouse is apparently) to California (?!!?) to Ohio, where they're currently stuck due to the snow. Only one state away now at least, I suppose. I guess my filters wanted some sun!

My doctor I saw in November right before I started my new job, he said I was doing pretty well too, but that switching DMEs would be a really big hassle and too soon to see if it was worth it... But at the same time he also gave me the clinician access menu code and a small range of pressures I can tweak with depending on which mask I'm using for the night (I keep trying the Air on weekends even though it's not really doing much good...I keep hoping I'll hit on something to make it fit even so. ) I think I'm going to try to see if at this point it's now at a point where I can get the data capabilities for myself, or see if he'd be willing to email me the logs he gets every so often or something. He's a good guy. We'll see what he has to say this time.

Thank you for telling me the name of the stomach thing The DME turned the EPR on 3 from the beginning, and I ramp for the full 45 minutes, that at least gets me to where I can fall asleep initially before my ear pressure goes too nutty. (I tend to catch up on here while I ramp. Seems appropriate. ) I will let my sleep doc know though, sounds like it's an important point to troubleshoot. It isn't as bad when I sleep on my side but still is there. Hm, as I think about my neck's extended out more on my back with my pillow stack, and my upper body's more ball-like on my side. I'll try to keep an eye on this. Thanks for that! I have a list going with questions now for my sleep guy My tongue does stay at the top of my mouth reflexively as I lie down though, my dentist pointed that out to me, he also said I had a big tongue. The sleep doc said I had really narrow sinuses. Guess that's how I have apnea without snoring, perhaps?

I actually did get myself a climateline and the bella ear loops and that nice smelling kit thing from our hosts, along with the hose snuggies. the ear loops are great when I'm using the regular hose with the snuggie, but the climateline seems to be too heavy for them, so I'm back to the other headgear until this wicked cold snap breaks and I can go back to the hose snuggie setup Only time I've gotten rainout since I got the snuggie or the climate line setup (I rotate them a bit, I like the feel of the fleece better on the outside but the climate line's just perfect when it's negative temps outside) is when the whole setup went upside down. It's what woke me up actually, not so much the crashing sounds (I knock stuff off the shelf above that I use as my nightstand all the time, that has stopped registering really), but the raining in my nose. Feels a lot like those times where you laugh so hard you start spraying pop out your nose...except it's going the wrong way.

I'm debating making a cage with a few door hinges, a milk or ikea crate (with nice big holes in either case, mostly holes but I plan on cutting it to size enough that there's not enough room to tip) and a latch and drill a few holes into the bookshelf and make a latching cage to keep the machine in. Plenty of airflow and room for the tube to escape but then it can't get knocked over. If the longer hose doesn't solve it I think that's my next step...the shelf it's on now is only about a foot off the ground.

...Holy wall of text. I know I get rambly but....wow. Ok. Sorry. Lot of ground there.

My doctor I saw in November right before I started my new job, he said I was doing pretty well too, but that switching DMEs would be a really big hassle and too soon to see if it was worth it...

I see no reason why switching DMEs should be a really big hassle. You just have the prescription sent to the new DME and order your stuff... By any chance is the doctor affiliated with or part of the DME you're currently using?

... see if he'd be willing to email me the logs he gets every so often or something.

There are no logs -- the only logs he can get are the logged hours of use -- the Escape doesn't hold any data other than hours of use. The doc can't get any more info than you can from your machine. He's probably given you the info on how to tweak your pressure settings because neither of you can get any real data (like your AHI) about how effective your treatment is. It's a sub-par way to treat this serious condition. All you can go on is how you feel. If you feel grrrrrrrrreat!!! it may not be a big problem, but otherwise it's hard to be flying blind with no data about how you're breathing at night and whether leaks are reasonably under control.

Really it's not too soon to step up your therapy.

The escape is NOT fully data capable, so either she doesn't know what she is talking about, or she is lying on purpose.

I would print off a sample report, take it in, and say THIS is what I want from my machine.

http://www.zoocrewphoto.com/misc/apap1.jpg

http://www.zoocrewphoto.com/misc/apap2.jpg

I had no problem switching DME's when they refused to switch the brick for a data capable machine. I just when to the BCBS website and looked up the list. Found one right around the corner from where I work.

Hey guys. I slept last night with...more ear pain than usual (woke me up several times, finally had to take the mask off for a few for the pain to stop and then re-ramp which I've noticed happens with sudden weather shifts a couple times before), but my stomach felt better than the last few days. Wish I could figure out what the difference was though. Like, my stomach didn't feel inflated and hard like a basketball this morning when I woke up. Full, but not quite so might-pop-if-you-poked-me-with-a-pin full. I'll take what I can get for now, I guess.

Well I don't know if my doc in particular is affiliated with them, but my DME is the preferred one for the CPAP stuff for my current BCBS medical plan, and I know for sure they're the best in the area for orthotics and prosthetics. It changes to another BCBS plan entirely next month though. Which is why I went with them in the first place...I knew their orthotics branch was awesome and I thought so would the CPAP. I'm just...quite upset about how drastically different things have been, actually. But I don't want to be too harsh because the guy who makes my orthotics is just *that* amazing, and I don't want that to be screwed up, y'know? At the same time though, every single person on the phone has claimed that the escape's fully data capable, so I think it's a party line. Which is not cool. I directly asked "what about data like AHI, actual sleep time, things like that" and they said it's being recorded. They also had a tattletale thing they had me clip to it to send data back to them, so I'm wondering if that sent back more than compliance or not. I'd love to know.

I've never gotten a copy of my script directly or seen any sleep study graphs. I asked the DME to show me they said no. Sadface, I am a numbers person and that really helps things make more sense to me. The doctor before gave me the important things verbally (21 AHI, for example, I don't snore, but my pulse Ox was in the low 80's while sleeping, and I had 0 REM sleep), but wanted to look at my machine more and we spent more time poking at the machine and also my face trying to make the most of my squeezed-in day-20-of-cpap appointment. He told me if I liked the pillows he'd be happy to adjust my mask script from FF requiring to RT's choice though! I don't want to be a pain in the butt patient, but at the same time, maybe this is the engineering self that is me, but it's a lot easier to tune this all with some quantifiable data.

Should I go talk to the DME i'd like to switch to first and see what they can do for me? I've worked with them in the past for things that current DME doesn't stock....I dunno, I think before I go to the current one "either you guys make this right or I bail" I want to make sure this is right. I don't want to be without a machine entirely for even a day if I can help it...the three times I've managed to fall asleep without masking up (one nap post-machine tip for an hour, one was an ER visit and the drugs zonked me out, better now though! and the other Friday night I managed to fall asleep at 1am (videogames on a Friday lol), woke up and masked up at 6:30am,and had to be up for the dentist at 10:30. bad me) I've felt so terrible on waking. And was a royal pain in the you-know-what until I got a nap with the mask in. It is definitely helping but I'm still not 100% where I want to be with this....the ear pressure and stomach thing are still pretty disruptive along with the pulling the whole setup over. I woke up this morning and my machine was partially on the shelf partially off the shelf. I think I got lucky it didn't fall : /

That said, when I go up north to visit family and my parents are driving, I have my cpap on with the car charger I got from our hosts and I snooze the whole 3 hour car ride outside of the hills. I really do try to get this thing on target.

But yeah, the new DME has Saturday morning times with their RT and I intend on getting up early (on my sleeping in day!) and get this sorted. The 21st is when I'm eligible for a new mask so I want to get this as ready to go as possible before that!

I also am going to be spending Saturday figuring out the paperwork for the switch for benefits. I'm still not sure if the next casting of orthotics will be covered or not, birth control coverage, all that good stuff. First time going through all this stuff, it's really confusing. The bills were bad enough to understand when itemized My work just sent me the packet today, it's...big. and confusing. Did I mention it's really confusing?

And thanks again for putting your thoughts in everyone

I suggest you search this forum for forum member Jankovitz before you speak with the DME on Saturday. You'll see several links in her signature which might be of interest to you.

SleepyStar wrote:I directly asked "what about data like AHI, actual sleep time, things like that" and they said it's being recorded. They also had a tattletale thing they had me clip to it to send data back to them, so I'm wondering if that sent back more than compliance or not. I'd love to know.

SleepyStar, NO NO NO, your AHI is NOT being recorded on the Escape! Only the number of hours the machine has been used. All that little tattletale thing is transmitting is compliance (number of hours used) info.

If you visit this page on the ResMed website you can directly compare the Escape and the Elite specifications. This is in the clinicians section of the website. There is no data that your doctor can get that you cannot get too.

http://www.resmed.com/us/products/s9_se ... inicians#s

Do you know how to look at the clinician menu on an S9 machine? This video tutorial shows you how -- what you'll see when you are in the clinician menu is exactly what is being transmitted to your doctor, nothing more. http://www.cpaplibrary.com/machines.html

So with the Escape, when you see your sleep doctor and he (or she) says you're doing well, all that really means is "I see you've been using your machine a lot!"

@Kaiasgram: I have looked at my clinician menu. When I first got it home the first thing i did was take a look. There ain't crap. But having the DME show me this directly is the point of asking them this as I don't think they know I have gotten Dr. ok to look around.

@ems: ooo. Thank you I couldn't remember who had that guide in their signature, but I remember seeing it while lurking a couple weeks ago.




I think it is really frustrating how they talk about accountability and how patients should be taking charge of their care by insurance and my doctors, but DMEs can pull this kind of crap of handing out bricks which makes that way harder . I bet contributes to noncompliance in the long run because I bet a lot of people give up due to the mask issues or not getting support from the DME properly...

Now here is a question...if due to the air swallowing my doc wants to try an autoset or the bipap after the appointment, how does that work with the rent-to-own thing?

Hi - First thing... if you do the wall-cage thing, make sure it's no higher (and pref. lower) than you in bed so humidifier water won't run into the hose, but back down to the machine. Second - aerophagia is a problem for many people (the stomach/air thing) and sometimes can be solved by lowering pressure just by a notch if it doesn't impact your therapy, or else possibly by raising the head of your bed just a few (4-5) inches on blocks of some kind, and that also helps with GERD if you happen to have it. Do a forum search for aerophagia tho' and see what others have said.

SleepyStar wrote:...having the DME show me this directly is the point of asking them this as I don't think they know I have gotten Dr. ok to look around.

Try not to be so intimidated by this DME -- if you have the doctor's blessing to access the clinician menu you have nothing to fear or be sheepish about. Alternative idea would be to print out that comparison chart on the ResMed website and show the DME rep exactly what the differences are and why you want full efficacy data.

I bet a lot of people give up due to the mask issues or not getting support from the DME properly...

Yep, and without even basic data like AHI there's not much support that can be offered since no one including the doctor can see if your machine is effectively controlling your apnea.

Take a look at the blogpost in my signature "Help, I'm Stuck with a Brick". You may be SOL, since you've been renting it for some months. No new DME is going to be willing to give you a new and data capable machine having lost out on several months rental income. But if you can't get a DME to switch it out, you may consider buying just the blower unit from Secondwind.com or our hosts--you can use your current humidifier and hose. What you want is the AUTOSET, NO Escape in the name.

As far as data, ResMed makes two Escape pieces of junk. One is straight CPAP and one is the Escape Auto. Escape Auto has SOME data, but not leak info and not a breakdown of AHI. When a DME says a brick has data, they are referring to COMPLIANCE data We all need to get into the habit of insisting on FULL EFFICACY data. It's important to be familiar with the machines so that the DME can't screw with you again. They will any chance you get.

You don't need the doctor's permission to use another DME, any more than a doctor can dictate which pharmacy you use to fill a prescription.

For the aerophagia, try to learn to sleep with your tongue firmly on the roof of your mouth, on that ridge behind your front teeth. That seals off the mouth from the nose, and keeps the air going into your lungs instead of your stomach. Test to see if this will work for you by putting your tongue there, plugging your nose, and seeing if you can breathe in. If you can't get any air in, you have a good seal, and that should stop the aerophagia.