Two weeks, and sleeping worse...

Hi all,

I'm very glad to have found this forum.

The first night I slept like a baby. I woke up at 5.30 and, after a quick consultation with Mr. Coffee, I practically jogged to work. I felt like I was 20 again.

The next night it was a little worse but still pretty good, and then something went wrong. I don't know if all of a sudden I butted up against reality or what, but it's got worse and worse. Now I'm actually getting less sleep than I was. It's currently 3.08 and I'm back to the place I was pre-CPAP.

The mask leaks like a sieve. I put it on so it's "right" and fall asleep immediately, only to wake up four ours later with it leaking. It doesn't seem to matter how I adjust it, it's throwing air into my eyes, onto my lips, onto my cheeks. I tried tightening it; no luck, and it's painful. I tried loosening it on the idea that maybe it needed to make an air seal, and it's just leaking. I haven't got a card reader so I don't know what my stats are.

I called my DME and they said it was too soon to switch masks, that it's still the adjustment period. Still, I want that first night to be every night. I don't want to wake up dry and bleeding from a sore under the bottom centre of my nose as I have done.

Unfortunately the DME took the packaging so I don't know what mask it is, but a little Googling and I'm pretty sure it's the ComfortGel Blue with headgear. The machine is a Resmed S9 Escape with the attached humidifier. I don't have any issues with the positive airflow (I fall asleep immediately) and I have a chinstrap that usually keeps my mouth shut, unless it slips (I have a big head).

Any suggestions? I am sold on the therapy in general and am chasing the Holy Grail of that first night, but I can't keep on waking up bloody. Thanks for any help you can provide.

I expect some adjustment an

Sorry for the sentence fragment. I expected adjustment but the fact that the first two nights were good is just weirding me out. Thanks for any help.

what you really need to do is to switch the machine and the mask.

your Escape doesn't provide any data in order to solve this problem. You'll need to get at least an Elite.

Do you clean the mask every day? Facial oils may be causing the mask to leak more. Be sure to clean the mask and your face before bed. For the sore try using AYR gel or chapstick BEFORE putting on the mask. You can get AYR gel at most pharmacies and supermarkets.

Brenda

When I was using a nasal mask, getting the mask fitting right was very hard, a definite "goldilocks" problem. Cleaning your mask and face every night is very helpful.

cflame1 wrote:what you really need to do is to switch the machine and the mask.

your Escape doesn't provide any data in order to solve this problem. You'll need to get at least an Elite.

Ditto to what clfame1 has said.
2 weeks with the mask is certainly long enough to know it will not work.

Time to do something about the dataless Escape is now before it passes the time limit that you can't get a data capable machine.
With the Escape all you can ever see if hours of use. Nothing else.
With an Elite you can see on screen data plus there is easily available software (don't mention the software to DME, they get their panties all in a wad when that gets mentioned) Just tell them that you want the on screen data that the Elite provides.
Use diabetic patient monitoring therapy with blood glucose testing at home as analogy if you wish.
With software you can see exactly how much leaks impact therapy along with a bunch of other stuff.

Pugsy wrote:

cflame1 wrote:what you really need to do is to switch the machine and the mask.

your Escape doesn't provide any data in order to solve this problem. You'll need to get at least an Elite.

Ditto to what clfame1 has said.
2 weeks with the mask is certainly long enough to know it will not work.

Double ditto!

Please be aware of this: You are half-way through the usual period where DMEs are (semi) willing to do exchanges of equipment. And it sounds like the DME is trying to string you out so long that they can (semi) legitimately tell you that it's too late for switching the equipment for you for free.

But BEFORE you contact that DME to complain about how they've set you up for failure, you need to read Janknitz's tips on how to dealing with DMEs You can find a ton of very useful information for dealing with that DME that's set you up to fail (and fail big time) by going to her blog Mask Arrayed and reading the entry What you need to know before you meet your DME.

Thanks for your help. The DME is telling me (after two weeks) that if they were to switch out the CPAP with a different model, they'd have to take a loss on the original Escape, since they can't give it to someone else. (I don't buy it, not for a second!)

Then they told me the insurance wouldn't pay for it. (This is not true. I have already called the insurance.)

They offered to get my card and download the data (except it doesn't look like the Escape records AHI and leak data). I asked if they'd do it every day so I can adjust my sleeping position, mask, etc.

I am getting nasal pillows today and will see how those work. In the meantime I've offered to call the sleep specialist and get a data-capable machine prescribed, which caused the DME to say they'd ask the area manager. ("We'd have to take a HUGE loss." "Aren't these machines $750 retail?")

This forum is invaluable—thank you for taking the time to respond to all the newbie questions!

dasubergeek wrote: ("We'd have to take a HUGE loss." "Aren't these machines $750 retail?")

Prices at https://www.cpap.com:

S9 Escape 758$
S9 Elite 805$
S9 Autoset 853$

Depending on your insurance, most carriers only 'rent' the machine the first yr before they 'buy' for you. That is btw the DME and the carrier. On your side, if you can get your doc to re-write the script for an apap machine, I would strongly suggest you get either the ResMed S9 or the Respironics comparable model [check cpap.com for more details]. INSIST on this with both your doc and DME. If the DME doesn't cooperate, tell them to take a walk and find another DME.

It is imperative you get a unit that is both apap and full data capable [eg the above two]. Then let's tackle your mask problem next -- most folks go through a few masks before they find the 'right' one. I started off with the Comfortgel because that is what the sleep center used for my study and titration, plus they gave me a free one. I switched to an EasyLife 2 wks later, and then eventually to a nasal pillow a couple of weeks later. Everyone is different and it might take a few different models before you settle on the one that works best for you.

Get your apap unit issue resolved first though and let us know if we can be of more help.

They offered to get my card and download the data (except it doesn't look like the Escape records AHI and leak data). I asked if they'd do it every day so I can adjust my sleeping position, mask, etc.

Luckily, you are seeing right through them. The ONLY data available on the Escape is compliance data, so what exactly are they promising to download for you???? Bozos!

Have you checked with your insurer to find out if you must use an "in network" provider? If not, then may you use any DME? Is your machine rented?

If it's a rental and you can use another DME, start calling around to other DME's first. Find one who is willing to rent you a ResMed Elite or auto (most of us prefer the auto as it may be used in either CPAP OR Auto mode), losing out on the first 2 to 3 weeks of rental. I suggest you stick with ResMed because even if your insurer rented the compressor, they most likely PURCHASED the humidifier portion, so you don't want to have to buy that part out of pocket on a new machine. Only once you have a firm committment to provide you with an Elite or Auto, then you should call the current DME and tell them you are going to return the Escape unless they agree to swap it out with an Elite or Auto at NO EXTRA CHARGE. If they refuse, tell them you are on your way to their office to return the machine and you will instruct the insurance company that you will no longer be doing business with them. If you purchased the Escape, this is going to be more difficult, unfortunately.

Beware of this trick: They may agree to provide you with an auto, but actually give you an Escape Auto. The Escape Auto has average AHI data, but doesn't break it down by type and doesn't have leak info. Don't accept an Escape Auto either.

They may try to have you sign something stating you are refusing treatment. Do not sign any such thing, because you are not refusing treatment, you are refusing the inferior machine they provided you with.

I'm lucky in that my insurance covers DME at 100%, in-network or out. They rent 10 months to own.

I don't trust this DME (whose name rhymes with Kin-Bear) any further than I can throw them underwater. I don't like being lied to.

I'm with "Kin-bear" too, and I felt like I was buying a used car.

Great! Then find another provider and dump that stupid bear!

I hope you will follow-up with a letter to whomever referred you to that DME (the sleep center or physician) with a cc to the higher ups of "kin-Bear" (BTW, it's OK to say "Lincare" here ) about why you dumped them.

Maybe if enough of us complain in writing, they'll finally get the message.

Yeah, when pigs fly. Oh well.

Janknitz, thank you so much for your help... and your link to the How To Deal With Your DME.

After all that nonsense, the lady from the DME showed up with an Elite. I figure that will do for now (she said they had no Autosets... I'm not sure if I believe her, but at least this has data on it) and a Swift FX nasal pillows mask.

She was NOT happy to be here, and frankly I don't give a rat's whether she was or not.

Looking forward to trying this out... and I have a check-in appointment later this week with the sleep centre. I will absolutely let them know about the sleazy behaviour. I've had better times buying jade in back alleys in Kowloon than dealing with these people—at least in Hong Kong they give you tea before they try to rip you off.