Poor DME care; how should I approach the doctor?

Hi, I was diagnosed with obstructive sleep apnea Sept 2014. For CPAP< the Sleep Medicine doctor sent me right across the hall to Apnea Care, which at the time I didn't understand was a DME as it looked like part of the Sleep Medicine Center. The respiratory therapist there gave me a ResMed Escape CPAP machine. I wasn't told that I had any options as to other machines. To the respiratory therapist's credit, he did a great job of showing me how to use it and scheduling follow up visits.
Two months into therapy, I'd made progress but was still waking up 2-3 times per night covered in sweat. My doctor told me this is a common sleep apnea symptom, as the body goes into fight-or-flight panic when breathing stops.
The therapist's answer was to give me a one-month 'loaner' machine that would record data. This was my first indication that the Escape machine was limited. I had to wait a month to receive the machine, as the staff told me it was a 'very expensive' machine that they had to share with all their patients. Then a month of data collection, then waiting for an appointment for him to tell me that he'd increase my 'rate' to a 10. A month later, still no difference, another appointment for him to tell me 'I can't help you anymore, you'll have to go back to the doctor'. I tried to press him for what he thought that meant. He shrugged and said "i don't know I am not a doctor. I am only trained to calibrate this particular machine that the doctor prescribed. Maybe you need a different machine.'
I've started to devour this forum, and learned that there's definitely better machines out there that will record data. I don't understand, however, how more data might help me. Are there other things to adjust other than humidity and pressure? I really want to go back to the doctor with a plan as to what I should ask for. More tests? A script that gives me more choice in what machine I get? I have good insurance and even if I have to pay I am willing.
BTW I've had tons of tests and ruled out menopause, cardiac issues, and anxiety as the cause of the nightsweats. It's pretty clear that it's the sleep apnea.
Please...any advice, thoughts, anything? I really appreciate this board and all it has taught me already.

A data capable machine is helpful because you can access the information by downloading a software program to show you what's happening to you at night. Maybe at 3am, you quit breathing, but the machine wasn't able to afford enough pressure to compensate? Maybe your pressure needs to start higher. Or lower....basically, there's an SD card that holds the info that's useful to tell you what is happening to you at night, WHEN it happens, and how the machine tries to get you through.

Kinda sounds to me like you were in compliance enough that insurance paid the DME for the brick, now the DME isn't interested in helping you. There ARE data capable machines available for WAY less than a DME charges. Try the $300-400 range for an S9 Autoset, with a few hours on it? Don't let them screw you out of your health. If you have to, do what so many others have done...buy a machine with money out of pocket, skip the DME, get replacement parts through someone like CPAP.com, ask your questions on this or another forum, or better yet, check past threads, as the often hold the answers you're looking for. It can be hard to find, but sometimes you will hit paydirt.

Welcome to the forum. I would consider seeing the doctor again if you have not already.
Night sweats can relate to many other problems (even cancer). In the meantime, continue your research.
I use my leak rate to help determine if my pillows need to be replaced, or if I should not trust the reported AHI number.
Ahi only lists the untreated events, centrals are the events that cannot be treated by either of our machines.
That would be another machine, like TattooedLady's.
Apap, or autotitrating machines change pressure according to your needs through the night.
Wave data shows which and when events occur, often shedding light on other contributing factors.

Sometimes not feeling as good as we would expect can be related to less than optimal therapy (maybe something as simple as excessive leaks).....sometimes not feeling as good as we expect is related to something that the cpap machine can't fix because it's a problem unrelated to sleep apnea.
The problem with having a machine that doesn't offer efficacy data is we can't at least rule out sub optimal therapy as a cause for not feeling so great.
So they sort of never really get a chance to try to isolate the problem and at least try to fix it.
Like if it were just leaks affecting therapy or maybe sub optimal pressure....maybe it's related to something else like meds or other ailments or other sleep problems (there's a long list of sleep disorders besides sleep apnea).
Maybe it's something easy to fix and maybe it isn't but a person has to start somewhere in their search for finding out what is possibly the problem. Without data people keep getting told "give it time" and sometimes time is what is needed but no amount of time will fix a big leak problem or a sub optimal pressure problem and ignoring other possible issues like meds makes for a lot of reasons why cpap machines end up in the closet because "they aren't helping"..

Now maybe your not feeling so great is related to something that the cpap machine can't fix....but until you can at least see the data that is available you can't rule out something as simple and easy to fix as leaks or sub optimal pressure.
Example....when I first started therapy I wasn't seeing much, if any improvement, because my pressure was sub optimal and once I got the pressures better optimized I started seeing some improvement in a couple of areas but still had some wake up issues.
In my case I also had some arthritis pain issues that caused the wake ups and thus messed with how I feel during the day.
Once I got my therapy optimized I was then able to realize that not all my sleep issues were fixable by the cpap machine and I could address those issues separately. If I hadn't been able to see my data I would likely have blame everything on the fact that the cpap wasn't "helping" and the machine would have ended up in the closet.
All I needed was a little change in the pressure though. The pressure advised by the sleep titration study just wasn't quite what I needed because I need more pressure in REM sleep and I simply didn't get enough REM sleep during the titration study to identify that particular need.

Don't expect much support from your doctor (though I hope I am wrong) because if he is in cahoots with the equipment supplier..he makes more money when non data machines are dispensed and makes more money when he gets to order a new sleep study and interpret it...and pooh poohs off data available on the machines for whatever reason.

Great feedback so far. I'll just add, you should get your prescription in writing for your records. That will enable you to buy a machine and supplies from a provider of your choice, probably at much lower costs.

If you have very good insurance, it still might be worth contacting them and getting a full list of in-network DME providers. The one you're going to now is not a good choice for continuing.

I think it's important that you be an advocate for your care and ask both the doctor and the DME whether it might be possible to exchange your machine for another. It seems unfathomable to me that a doctor would prescribe a machine that does not collect data since then the doctor cannot determine whether the pressure settings are correct, whether you are still having apneic events, whether you are having leaks, etc. The data is the only thing your doctor has to evaluate your care.

Found this http://www.mayoclinic.org/symptoms/nigh ... m-20050768 if you notice Sleep Disorders is on the list.

zmbee wrote:It seems unfathomable to me that a doctor would prescribe a machine that does not collect data since then the doctor cannot determine whether the pressure settings are correct, whether you are still having apneic events, whether you are having leaks, etc.

*ROFL* really? it happens all the time. and then there's the reports of many many people here who have data collecting machines, and they take the data in, and their "doctors" (quacks) don't even want to look at the data.

We are afflicted with a disorder, compounded by the fact that treating it is more work than
many "professionals" are willing to expend. Lazy doctor = bad doctor.
@squid: Great mayo link!

You can easily and inexpensively replace the blower unit of your machine with the same series blower unit. That way you don't have to replace the humidifier, too. If you have insurance coverage despite the fact that they just bought you one, you can play the DME game again (and waste a lot of time and energy talking a DME into giving you what you want), from CPAP.com or other online retailer, or you can buy used from Secondwind.com or Craigslist.

An efficacy data capable machine can really help you figure out what's going on.

Janknits- replacing the blower unit- interesting! I I'll look into that.

The sad fact is that the insurance company has one payment code for "cpap machine". Whether you get the dumbest, cheapest "brick" (as we call it) or a top of the line data-capable auto-adjusting machine, the DME gets the same payment from insurance. So the best thing for their profit is to give you the cheapest model machine that they can get away with. The manufacturers make it easier for them by producing lines of machines, all with very similar names and appearances.

When I met with my new sleep doctor, I let him know that I was very involved with my treatment and had used the manufacturer's software to examine my data. After my sleep study, he wrote a prescription that specifically called for the latest AirSense 10 autoset model. I'm still waiting to hear from the DME after they work it out with the insurance. In the meantime, I picked up a machine that I found for $100 on craigslist, but that option requires a lot of research and asking questions to make sure you get something worth the asking price. Most of the machines on craigslist are older models and the asking prices are based on the ridiculous insurance/list price. You need to verify the model numbers and find out how many total hours of use it has on it. It's a lot of work, but can be worth it if you have to pay out of your own pocket.

hopeforsleep wrote:still waking up 2-3 times per night covered in sweat.

My guess is the same as yours - you are still having some clusters of lengthy apneas - not good!

If you had a data-capable machine and used SleepyHead, you would be able to see whether or not this is the case.

It's sad that doctors prescribe so many "data-incapable" machines.

Just got off the phone with my DME, Apnea Care, wanting to know what my options are for getting a better machine. They told me that 1. Even though the script isn't written for a particular machine, I would need a new script to specify 'autotitratoon machine' in order to get a better model, and then I would have to pay $160 extra because those machines are more expensive and 3. She would have to speak to her supervisor because I had been renting the machine since September and I would be getting a brand new one (which I thought was the point of renting).
Does this make sense or am I being snowed? I have a doctors appointment on Friday.

I called my insurance company and they couldn't give me a straight answer, said I would have to wait until I got a new script and they would review my case.

Depending on your deductible or copay, you may be ahead buying out of pocket.
If you suggest this to the DME, (with them NOT providing the machine), they may be a little more helpful.
Putting them on the spot or lose your account could bring results.