Problems getting diagnosed

[Guest 10560]

Hello all,

After years if snoring and my wife saying "you should get a sleep study" , I finally listened to her advice and went to a doctor. He said, yep you need a study. I went to the sleep center. They said yep, you need a study.

Long story, but 4 months later I took home a home testing unit. Seriously, I didn't sleep. I might have slept an hour or two, but it was pretty shallow sleep. Guess after so long I was so anxious..plus every conceiveable distration: lights going on, loud neighborhood sounds, even an earthquake (no joke).

I took the test machine back and told them I hadn't slept more than an hour. My wife had to drive me there because I'm normally not too awake, but with NO sleep... They came back, read the "preliminary results", and said no sleep apnea.

I have all the symptoms. My dad had it bad, so I know what it looks like. Frustrated I bought a machine on Craigslist (pretty much new with masks/filters/tubes still plastic sealed) and hoped I wouldn't get busted in some sting operation..

I'm one of the rare ones that it helped the first night. Over the following few nights adjusting pressure and trying a different mask it only got better. I feel like I have slept for the first time in decades. I actually wake up feeling refreshed. It is absolutely wonderful. I imagine this is familiar, but for, well as long as I can remember, I never woke up feeling like I had even slept.

My question? If I really didn't sleep for the test, or at least in short, shallow windows, how would they have enough/proper data? How do I "get back into the system"? The sleep center isn't being too cooperative. What happens when you can't sleep at a sleep study? Is there a point when you can "try again"? It was so hard to get insurance to pay the first time..

[Pugsy]

Any number of reasons why the home study was inconclusive due to not getting enough sleep.
Perhaps your OSA is like mine ....worse in REM sleep and if you didn't get any REM then not much to show up.
Perhaps you have UARS (Upper Airway Resistance Syndrome) which home studies really can't tell anything about at all. The thing about UARS ...treatment is still cpap.

At any rate if you are noticing a significant improvement using the cpap machine on your own then you have something that is responding to cpap.

Is there some special reason that you need insurance to be involved? UARS often is a huge fight to get insurance to pay for the equipment unless the doctor really comes to bat for you...if that is what is going on with you.

There are lots of forum members who have elected to go the self diagnose and self treat route with great success. Some don't have insurance and some have such high deductibles that they wouldn't ever get the deductible covered so that insurance would pay their share.
The most expensive part of the treatment is the machine and you already have that. For masks...there are ways to get masks that aren't horribly expensive and with common sense care they won't need to be replaced all that often.
For the little things like filters and hoses...I buy them online because they are cheaper online without insurance being involved than going with the DME and insurance and my copay.

Also there is one advantage to not having sleep apnea on your medical records...life insurance. Often when people have sleep apnea and they try to get life insurance it is denied or rated up with significant premium increase.

Which machine did you get from Craigslist? Hopefully it is a full data machine and you can use the available software to see how the therapy is going.

[Guest10560]

Thank you for the response. I had not heard of UARS, but that also sounds quite feasible.

I guess my thought "getting back into the system" is mostly due to the presciption nature of the CPAP device. If CPAPs are generally available outside the system and those available can be adjusted in the future when the machine I found dies, then I'm fine educating myself and going it on my own. My brother in law has a unit that he can't adjust himself and can't get anyone to change unless he has another sleep study. If my current machine breaks and whatever I CAN get on my own is something I can't adjust, then I could be stuck.

It also annoys me to pay so much for insurance and actually have something where I would need it and end up paying out of pocket. I guess that's pretty secondary really..

How long do these machines last anyway? The one I got has about 100 hours on it.

No on the extra machine info... the machine I got (REMstar a-flex auto..) is what I believe you would call a "brick".

[ajack]

you haven't said what pressures you are running, but you could set a fixed cpap 5cm, that could show some apnea to show your doctor

[Guest]

the machine I got (REMstar a-flex auto..)

Auto should have data you can use Sleepyhead to see that data.

My brother in law has a unit that he can't adjust himself

Find out the make & model and you can prob learn how and teach him.

[zoocrewphoto]

My brother in law has a unit that he can't adjust himself and can't get anyone to change unless he has another sleep study. If my current machine breaks and whatever I CAN get on my own is something I can't adjust, then I could be stuck.

Any machine can be adjusted by the user. The doctors and providers prefer that we don't know that. Each machine has a combination of buttons to push to get to the clinician screen where you can change the settings.

It also annoys me to pay so much for insurance and actually have something where I would need it and end up paying out of pocket. I guess that's pretty secondary really..

Totally agree. My first machine was covered by insurance, mostly. I was still in deductible phase for the sleep study which was one of the higher priced studies. But it was a good one with immediate improvement, so I got a good start. This is the first year in the last that I have met my deductible, so I have been buying supplies out of pocket online. I'm not gonna pay full DME price when I know I can't get past the deductible.

My backup machine is the same as my main machine (now 5 years old). I found it on craigslist for $200, and it is a Resmed S9 autoset with full data. My mom uses the same machine. So, if either one of us has a problem with our machine, we can use my backup machine.

If I were you, I would look on craigslist for a machine with full data. You should be able to find one in the $200-300 range. The newest machines are the Resmed Airsense 10 and Respironics Dreamstation. Most models have full data, but a few do not. They may be a bit more since they are newer. The Resmed S9 is discontinued, but still a great machine. The Autoset is a full data machine with auto ranges. The Elite is a straight pressure machine with full data. Respironics has several machines with full data, but I am not exactly sure of the model number you need to be above to get full data. I believe it is above 260. Machines in the 450/460 and 550/560 range are all good.

You can always look at an ad and ask us here if the machine sounds like a good one. Meet i a public place like Starbucks with outlets so that you can make sure the machine runs. Ask in advance (and test when you meet) if the machine has been used around smokers (if that is a problem for you). The first used machine I bought smelled like smoke, and I had to resell it with full disclosure and get a different one.

How long do these machines last anyway? The one I got has about 100 hours on it.

No on the extra machine info... the machine I got (REMstar a-flex auto..) is what I believe you would call a "brick".

[robysue]

My brother in law has a unit that he can't adjust himself and can't get anyone to change unless he has another sleep study. If my current machine breaks and whatever I CAN get on my own is something I can't adjust, then I could be stuck.

The durable medical equipment providers (DMEs) who provide the equipment when you have a proper script like to tell people that they cannot change their settings. Some go so far as to make it sound as though it is illegal to change your own settings. Some sleep docs and some DMEs are really anal about the idea that a mere patient should know diddly-squat about the machine they sleep with every night. Others are more open minded, at least with patients who can demonstrate they've taken the time to educate themselves. My current sleep doc and I talk about my settings and if we jointly decide that it's worth experimenting, I go home and adjust the machine myself rather than going back to the DME. I give the sleep doctor updates on how the experiment went and whether I've decided to keep the new settings, go back to the previous ones, or go onto a new experiment. Saves a lot of time for me and a bit of $$ for my insurance company.

And the clinical manuals for all common CPAP machines are available through the web. Once we know the make and model of the machine you've bought, we'll even be able to tell you exactly how to get the manual for your machine. While you're at it, you could also let us know about your brother-in-law's machine and we'll help you find it as well. Once you have the clinical manual, you'll be able to get into the clinical menu and make the changes you might need to make.

How long do these machines last anyway? The one I got has about 100 hours on it.

Most insurance companies will not authorize replacing a CPAP until it is at least 5 years old. And they're designed to be used for 7-9 (or more) hours each night. So companies design these things to last at least 20,000 hours or more. So 100 hours is nothing. It's essentially brand new.

No on the extra machine info... the machine I got (REMstar a-flex auto..) is what I believe you would call a "brick".

In general the auto PAPs are not bricks. But the question is how old is the model you bought---if it was manufactured in the last 6 or 7 years, then it is likely to be a PR System One (Series 50 or Series 60) or possibly a DreamStation, and all of these are NOT bricks. The older M-Series APAP machines are not bricks, but they do have a proprietary data card that requires a special card reader and the Resprionics Encore software to read the data.

Can you do the following: Take the humidifier tank out of the machine, turn the machine over, and look for a tag with a model number on the blower unit. Then tell us exactly what model CPAP you have.

[Pugsy]

Changing pressures (and finding out how to do it) is easy.
Go here (your BIL can do it too)
http://www.apneaboard.com/adjust-cpap-p ... tup-manual
and request the clinical manual for your machine (once you figure out exactly which model it is)...the Remstar part of the model name doesn't help us much because Respironics has used "Remstar" on all their machines since time began until the last model release and they changed to "DreamStation".
Now the AFlex part does tell us something because all Respironics with AFlex are apap capable machines and are full data.
So you don't have a brick.

I have been on cpap for a little over 8 years. I have never used my insurance for a machine purchase but I have used it for masks...get a new one every 6 months. I just shop smart and what I have paid for out of pocket as always been equal to or less than my copay if I had used my insurance. I also just buy a new model because I want to and don't have to justify it. I get good deals and then when I spot something I want that is new I sell my old used machine to someone for so cheap it makes a good back up machine for them. Everyone wins.
Craigslist or we have some forum members who dabble in machines and have a source for good used or even brand new machines.
My most recent purchase was a high end specialty machine with only 2,000 hours on it and it's the latest ResMed machine (had been wanting to try the new model) and I got it for $100. New it would cost upwards of $3K or more.

Unless you run into some complicating factors there's no urgent need to have a doctor involved. Plain jane vanilla OSA or UARS is easily managed by the patient with just education and understanding of what they are doing and what they see on the reports.
If something unusual pops up (like a large number or central apneas which your machine can't treat) then a person can go the official medical route if they wish.

As to how long do these machines last? It's a crap shoot when it comes to electronics but the failure rate is quite low and most will easily make 15K or 20 K hours.
I know of a place that can do both Respironics and ResMed machine repair and even warranty work if the machine is still in warranty (usually 2 years).

Unless you happened to get a really old machine you will likely be able to use SleepyHead software.
https://sleep.tnet.com/equipment
If you get it let me know as there is a leak setting that needs to be adjusted for Respironics equipment...the default install is for ResMed and it can make SH tell you that you are having bad leaks when you aren't.

Once we know the model number we will know for sure exactly which model you have.

[Guest 10560]

Excellent responses all. Many thanks.

My model is a REMstar 250P Rev 00 w/ humidifier. It looks like the previous owner got it in 2010, although it obviously wasn't used much. I downloaded Sleepyhead and got "compliance logs only".

I guess much of my concern with "getting into the system" was the sense that CPAPs are unavailable without a prescription and unadjustable even if you did go "underground" and find one. It sounds like there are options on both. And yes, there are hints of legality from the sleep center if you touch the settings and a sense that "this is something best left to the professionals". Maybe my needs are simple, but a fews days of reading and experimentation and I was sleeping through the night.

I will find out my brother in law's unit. He's an electrical engineer for the Feds, so no dummy, but couldn't find a way to adjust his newer machine. He will be THRILLED if he can adjust it on his own.

This is all quite thrilling. Sounds silly, but it is actually exciting to go to sleep now since I wake up refreshed. I was starting to wonder as the months dragged on trying to get the "prescription", especially after "failing" the sleep test, if I would ever reach this point.

[robysue]

Excellent responses all. Many thanks.

My model is a REMstar 250P Rev 00 w/ humidifier. It looks like the previous owner got it in 2010, although it obviously wasn't used much. I downloaded Sleepyhead and got "compliance logs only".

Yep. You got a brick that doesn't record the data you need to make self-treating much, much easier. In the System One line of machines, you need a model number of 450/460 or (preferably) 550/560 in order to have the efficacy data you need.

You can self-treat with a brick based just on how you feel, particularly if you don't run into any significant adjustment problems, but it's not as easy as having the efficacy data is.

I guess much of my concern with "getting into the system" was the sense that CPAPs are unavailable without a prescription and unadjustable even if you did go "underground" and find one. It sounds like there are options on both.

As we've told you before---with the appropriate clinical manual, you can learn to adjust any CPAP/APAP machine.

And yes, there are hints of legality from the sleep center if you touch the settings and a sense that "this is something best left to the professionals". Maybe my needs are simple, but a fews days of reading and experimentation and I was sleeping through the night.

The American medical system treats sleep apnea patients like they are idiots. If I recall correctly, CPAPs are available over the counter in Australia.

Still, it's worth pointing out that you do need to have some idea as to what the various settings do (in terms of therapy and comfort) before making changes. But that's not difficult to learn.

I will find out my brother in law's unit. He's an electrical engineer for the Feds, so no dummy, but couldn't find a way to adjust his newer machine. He will be THRILLED if he can adjust it on his own.

No DME will ever show a patient how to access the clinical setup menu on the machine. And they'll all give you stern warnings about how the settings should (can) only be adjusted by a professional. It's part of their customer-unfriendly business model.

This is all quite thrilling. Sounds silly, but it is actually exciting to go to sleep now since I wake up refreshed. I was starting to wonder as the months dragged on trying to get the "prescription", especially after "failing" the sleep test, if I would ever reach this point.

Sounds like you are off to a good start.