DME says Not to look at SleepyHead!

[Ogeo]

I am only 3 weeks into PAP and stopped by my DME which has treated me great up to this point. I wanted them to take a look at my card, mainly at my leakage data. I have tried 4 different FFM, and asked their opinion about using pillows or nasal mask with my high pressure. (I didn't tell them that I already had a pillow mask coming my way). She basically said that I need to wait for 30 days and then need to be seen by my doctor or sleep doctor and I just have to have the words CPAP in the discussion with the doctor. It doesn't have to have any meaning, just tell the doctor that I'm using it. I was told by the RT to stop looking at my sleepyhead data. That it wasn't important to learn what it all meant. She said that I would just drive myself crazy and it wasn't necessary. I was also told (about the mask) that she didn't know what else she could do. REALLY?

I am what you might call a global learner. I want and need to know what to do and the why behind it all. Just following the steps isn't enough for me and if you want to drive me crazy, keep all the behind the scenes from me. Now don't get any ideas, guys! BTW, I didn't follow her advice.

I received my Nuance Pro Pillow Mask and have tried it for 2 nights. The first night was great even though I got up twice. The leaks didn't even register on the machine but did show up a little on sleepyhead. I slept lots better because there were NO loud farting sounds all night long and so did my hubby. The second night I got up tired at 5:30 and went into the living rm to sleep another hour in a chair. I still have to work on keeping my mouth closed. I woke up with my lips closed but still had my teeth apart and air was escaping through the lips even with the chin strap. It turned out the chin strap didn't stay in place but slipped off the back of my head. I am very impressed with the pillows and know that I can get them to work. They are so much more comfortable than a FFM. My AHI was 1.09 and 1.47 for those pillow nights. My leak rate 90% was about 2 compared to 37 with the FFM. It has made my hubby smile - no more noisy nights.

I am definitely a work in progress!

[Semily]

I want and need to know what to do and the why behind it all. Just following the steps isn't enough for me and if you want to drive me crazy, keep all the behind the scenes from me.

I am the same way and can totally sympathize! I need to understand the big picture of how everything fits together. The secrecy and lack of information sharing has been the most frustrating part of all this for me. It sounds like you're doing great!

[Krelvin]

I guess it depends on who you are talking to and what they expect that you might know or not and if that may have caused them grief in the past with a previous patient.

It seems strange that if you start a program for weight loss that you would not keep track of what you are doing for intake, exercise etc... or if you need to monitor your blood sugar you wouldn't know what your blood sugar levels are.

But not knowing what you are doing on something you are going to use for close to a 1/3 of your life after you start is supposed to be a secret?

My sleep dr was surprised I had full data on my existing machine and had reports printed out for my first visit. I was surprised to learn at my second visit that he was actually a cpap user himself for the past 6 months and had a much better idea what it was like to go through the process as a patient. He had no issues with me making sure I got a auto machine with full data and knew why.

The guy show set me up at the new DME didn't seem to be phased when he realized I already knew about what settings there were and should be available on the machine, but was a bit surprised to find that I had the clinicians manual for my previous machine and was expecting the one for the new machine in my email shortly.

I think things are changing though... Years ago, you had to ask for info like what your BP was, heart rate... and they would not bother to tells you, just write it in the chart. For me now days, they simply announce it so that I can record it in my phone without me asking for it.

[raftergirl]

I just had my 6 week follow-up with my Sleep Doc, and she was happy that I'm using sleep software to monitor my therapy. She wasn't familiar with SleepyHead specifically, but had no objection to me using something to monitor my progress. She said that many people don't learn about how their therapy works, and she thought it was cool that I've put in the time to learn about it. My DME folks have been pretty good, but there were things I've learned just by reading the manual that came with my machine that they didn't know. I might not check my data every day at some point, but I will follow it to make sure everything is working the way it should.

My check-up was great. My AHI is now 1, minimal leaks, and my overnight oxymeter test was good. More important, I feel so much better.

[bwexler]

I would have to say to the DME, I don't need to look at you.

[archangle]

The medical mafia is a lot like the regular mafia. They don't like it when someone starts intruding on their territory, or if their customers start finding alternate sources.

That said, some people do obsess over their CPAP data. Don't worry about minor changes and don't tinker with things too quickly.

[Ogeo]

The medical mafia is a lot like the regular mafia. They don't like it when someone starts intruding on their territory, or if their customers start finding alternate sources.

LOL.

That said, some people do obsess over their CPAP data. Don't worry about minor changes and don't tinker with things too quickly.

The only thing I monitor right now is the AHI, and my leaks. The leaks were the most important thing to me since they were keeping me up all night and I had better sleep without the therapy. Don't worry. I'm sticking with it and know the advantages. The only thing I'm actually tinkering with right now is the humidity for the machine and the hose. I'm not going to change anything else until I know what I'm doing and after my compliance has been met for my insurance. I figure at that time, everyone will forget about me. I got this figured out. It is up to me to find the exact comfort level that I can with a mask, humidity, pillow, etc. This means experimenting with different things until I find what I like.

[Thewino]

Ogeo,

That is just down-right crazy advice. I am of the opinion that all should learn about their health issues. Especially when a program is easy to use, free to use, and all sorts of people on this forum will help you with the program if you need it.

I find that an awful strange comment from your DME and would both raise red flags and make me suspicious. Maybe it's just me, but I do believe your DME wants you to be totally reliant on them only.

I wish you well,
TheWino

[chunkyfrog]

You have already seen the man behind the curtain; the genie is out of the bottle.
Pandora's box only holds grief for the idiot trying to keep it locked.
I'm so proud of you!
Old country wisdom says a child needs to stretch in order to grow.

[AlabamaAl]

Someone telling me not to look at my data is like a used car salesman telling me not to look under the hood of my car.... ain't gonna happen!

[Denial Dave]

In some small respect the DME is correct. ( flame wars can start now)



But whether your using Sleepyhead, Rescan, Encore, etc.. it can be very tempting to get yourself wrapped up in looking at every nuance of the data every day.

Before looking at your data, give consideration to how you are feeling and how well you think you are sleeping.

A bad night of data doesn't always mean something is going wrong. Our sleep quality every night can vary a lot depending on food intake, weather, stress, etc...

I typically download my data twice a week into Sleepyhead....I glance at AHI, leaks & Flow limitations to see if there is anything unusual going on.

[Paralel]

I would say checking the data each day once you start your device is a good idea, so you know how things are looking, what, if any changes need to be made, if you make any changes, what impact do they have, etc... However, once one has a stable group of settings, with a good AHI, and isn't changing their equipment, other than spot checking to make sure everything looks good, or checking what is going on if the way you feel after waking has suddenly changed, there really is no point in continuing to check it every single day.

[chunkyfrog]

The only ones for whom this would be a problem are obsessives,
Trying to get an obsessive to chill, is not only ineffective, but cruel,
because as odd as their behavior may seem to others, it can still be comforting to those so afflicted.
The RT is ignorant, and probably lazy.

[Jeff241]

It doesn't have to have any meaning, just tell the doctor that I'm using it. I was told by the RT to stop looking at my sleepyhead data. That it wasn't important to learn what it all meant. She said that I would just drive myself crazy and it wasn't necessary. I was also told (about the mask) that she didn't know what else she could do. REALLY?

I find that odd but not surprising. I would hope a RT would want a patient to know how their therapy is working and to know what is going on. I can see them not wanting you to fiddle with setting, but if something it not working at least you can know by looking at the data. Now some OCD types will go to extreme and worry about every change but for most people having knowledge about their condition would be good.

Of course I'm preaching to the choir here, most members on CPAPTalk believe in checking their own data.

[englandsf]

You should look for a new DME but experience tells me finding a good one is like finding a unicorn...

Good luck SE