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+--- Thread: [Diagnosis] Opinionated Sleeper grows a hose (/Thread-Diagnosis-Opinionated-Sleeper-grows-a-hose)
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Opinionated Sleeper grows a hose - GregLawson - 01-25-2016
When I was about seven I kept my self up one night worrying that if I quit paying attention to my breathing, I might suffocate. Thinking back it seems this might not have been as crazy as it sounds, since it was about the time I learned to swim; where it is undeniable that if you don't pay attention to your breathing, you are in grave danger.
Fortunately my mother reassured me that it was my worrying that was keeping me awake; I should just give in, relax and my breathing would take care of itself. Like much of my mother's advice, it served me well for several decades. Now in my (early) retirement I have the freedom to question any of the apparent truths of my childhood.
The first inklings of a problem came when my wife told me that our son's orthodontist was offering "free" screening for sleep apnea. His diagnosis was maybe. Since I was working full time and raising two boys, I didn't have time for maybe. My wife began reporting that she heard me gasping in my sleep. But I was already frustrated by fruitless hunts for noises my wife heard in the night, so I did nothing. After I retired, another dentist screened me for apnea and referred me to a sleep testing business. But I felt the target of a sales campaign and resisted.
I ran into two more problems in deciding on where to have my sleep test done: pricing and ownership of computer test results. The lowest prices were on my insurance company web site, put those phone numbers were no longer in service. The next lowest prices were cash prices. The highest prices were the ones the insurance company had negotiated (Why am I paying for this upside down negotiation? Because my former employer is picking up most of the bill. I get angry when ever I think about our insane insurance / health care economic / system?). My kindly PCP recommended a sleep clinic if I wanted a lot of data.
I decided I would do the sleep test only if I could get full access to the computer record, but knew receptionist / scheduling people would not know what I was talking about. Finally on the sleep clinic web site I found the phone number of its Chief Sleep Technologist. I figured with that grand title, he couldn't feign ignorance about my request for data.
I bought a pulse oximeter from Costco online and it was reporting alarming AHIs of 15. I finally went and saw the sleep doctor and he referred me for a sleep test. He didn't seem alarmed by my oximeter data since it seldom fell below 90%.
The sleep test was a fairly miserable experience. The appointment was for four hours before I normally go to sleep. The sleep technologist said they would make a decision at 2 PM if I had enough sleep. At midnight I asked to take the Ambien the doctor provided since I wasn't sleeping. She said I actually had slept but not enough to do the CPAP nitration. Was I going to have to endure another sleep study to get a CPAP? Sleep professionals like to say they can tell when you're sleeping even when you deny it. It's not really a fair argument because of massive sleep amnesia, but Gayle Green, author of Insomniac, says the EEG is an imperfect measure of sleep; fMRI studies have shown brain activity at deeper layers than an EEG can sense, in insomniacs that claim they are awake, when the EEG says they are asleep.
Back at the sleep doc, he wants to prescribe a dental appliance, and sleeping on my side. I tell him I've been mostly sleeping on my side for many years since my wife started noticing the gasping for air. I told him I was psyched up to get a CPAP (not telling him the excitement was from reading apneaboard.com). I was shocked when he agreed and told his office to call in a prescription to vendor#1. I asked, didn't he have to prescribe a pressure, and he replied, "These days they are all set the same".
I also asked to have my prescription sent to my in-network DME supplier. But when the DME finally told me the rental and purchase costs after deductible for a ResMed 10 without a humidifier, I decided to purchase what I wanted directly from Supplier #1. Maybe I'll let them buy me a backup machine when my deductible is used up.
After three more phone calls I finally got all my sleep study data: 1.5 pages of narrative, 1 page of graphs, 3 pages of tables, and a DVD with two giant files: an AVI video of me sleeping (or not) and megabytes for binary data. I've started writing code to extract useful data, but nothing much to report yet. In addition, I got permission to record with my own oximeter during the sleep test.
I've been studying my APAP data in Sleepyhead, pulse oximetry data, Sleep for Android (maybe I have stopped snoring), and Garmin Connect.
There's lots more to say, but this post is getting long, so I'll post now so you'll have a chance to respond.
RE: Opinionated Sleeper grows a hose - Sleeprider - 01-25-2016
Greg, you've made a good case for patient empowerment. It's unlikely you will not fully benefit from your therapy since you're basically designing it and seem to have a very good understanding. It's rewarding to know that what we write here benefit users like yourself to get started and to avoid being exploited by the medical and insurance organizations that have made such a mess of sleep apnea diagnosis and treatment.
I'll look forward to more installments as to how you're doing.
RE: Opinionated Sleeper grows a hose - PaulaO2 - 01-26-2016
Before you buy out of pocket from Supplier #1, check out Supplier #2.
RE: Opinionated Sleeper grows a hose - Sleepster - 01-26-2016
Greg, since you live a large metropolitan area, craigslist is a good way to buy a machine. Just do your research and make sure you're getting an auto-adjusting CPAP. Nothing older than a ResMed S9 Autoset or Philips Respironics System One (PRS1) Model 550 or 560.
In fact, I would recommend a bi-level auto-adjusting machine. Nothing older than a ResMed S9 VPAP Auto or a PRS1 BiPAP Auto Model 750 or 760.
RE: Opinionated Sleeper grows a hose - DariaVader - 01-27-2016
I'm slightly green with envy over your acquisition of the *full* sleep study!!! Good job!
RE: Opinionated Sleeper grows a hose - GregLawson - 01-29-2016
(01-27-2016, 05:30 PM)DariaVader Wrote: I'm slightly green with envy over your acquisition of the *full* sleep study!!! Good job!I believe patients should own at least a reading copy of all their medical data. I seem to recall that (in California only?) patients are entitled by law to a copy of their medical records so that they can change doctors or get second opinions. HIPA might have made it national. Also if you ask the right person (usually a technician) at the right time (usually right after the procedure), I've gotten MRI images and X-ray images on CD or DVD for no cost. Technicians are often glad someone paid them some attention, rather than all the glory going to the doctors. Also modern medical equipment is often part computer and transferring data is part of the technicians daily job. I don't worry when the technician says they can't give me the software to read the data, since data is often in standard formats and open source software may be available to read it. Or if sufficiently motivated, I can write software.
I asked the sleep study technician to take a picture of me, which she did, but I wanted more, so I took pictures of all the wires and equipment in the room as clues for reverse engineering my data.
I haven't found any open source software yet for the binary sensor file, but if the programmer was as lazy as me, its probably standard binary formats with each record holding one value from each sensor. The product of the record size and the number of records in time is probably the file size. The number of records factor is likely much larger than the record size factor. My file size is 442848000 whose prime factorization is 2^8 * 3 * 3^3 *7 * 659. If I had the sizes of many sleep study files, the record size would likely be a factor of the Greatest Common Divisor of all the file sizes. The record size is also likely a small multiple of the number of wires or channels (20 to 30?) attached to me.
Not knowing the exact record size I could generate all likely candidate factors and calculate the correlations between all columns. Sorting factorizations by the calculated average correlation coefficients (r^2) would be the order I would examine the data. I would try to duplicate graphs and cross tabulations in my printed sleep report to confirm correct decoding.
I'd recommend every reader who has a sleep study ask for as much sleep study data as you can get. It won't be easy, I had to ask the doctor, the chief technologist three times and hospital medical records two or three times before success. I think it's worth it, as I've already been referring back to the printed report for multiple readings and checking new theories as I learn more about sleep.
Based on progress and / or interest I'll probably create a repository on github.com for R scripts for sleep study and SleepyHead export data.
RE: Opinionated Sleeper grows a hose - DariaVader - 01-30-2016
HIPAA is a national thing. *when* you get to talk to techs - yes you can get good stuff. I have thousands of pics of slices of my husbands brain from his MRI for that reason... but my sleep study was a home test and getting more than summaries of anything from non-techs can be like pulling hens teeth
I have *some* of my data, but for instance it mentions "numerous RERA" but doesnt quantify that number anywhere. In addition, I was not sleeping for the majority of the time i was wearing the equipment so its amazing that they caught apnea at all. It does show graphs of my night and says what position i was in and when any events occurred. Somehow they even said it was worse during REM but since there was no EEG and the thing they called REM was the tiny bit of sleep i did get... seems mostly bogus in any case.
RE: Opinionated Sleeper grows a hose - cpdaniel - 01-30-2016
(01-29-2016, 09:20 PM)GregLawson Wrote: I asked the sleep study technician to take a picture of me, which she did, but I wanted more, so I took pictures of all the wires and equipment in the room as clues for reverse engineering my data.
I haven't found any open source software yet for the binary sensor file, but if the programmer was as lazy as me, its probably standard binary formats with each record holding one value from each sensor. The product of the record size and the number of records in time is probably the file size. The number of records factor is likely much larger than the record size factor. My file size is 442848000 whose prime factorization is 2^8 * 3 * 3^3 *7 * 659. If I had the sizes of many sleep study files, the record size would likely be a factor of the Greatest Common Divisor of all the file sizes. The record size is also likely a small multiple of the number of wires or channels (20 to 30?) attached to me.
Not knowing the exact record size I could generate all likely candidate factors and calculate the correlations between all columns. Sorting factorizations by the calculated average correlation coefficients (r^2) would be the order I would examine the data. I would try to duplicate graphs and cross tabulations in my printed sleep report to confirm correct decoding.
MY first hunch would be that all of the data is EDF format, as this is the standard most commonly used for PSG, ECG and EEG data. There are free EDF readers available on the internet, and the spec is open and freely available as well - just search for edf format with your favorite search engine and you'll find it. Many PAP machines also produce their data in EDF format - PR and Resmed do for sure.
RE: Opinionated Sleeper grows a hose - GregLawson - 02-07-2016
(01-30-2016, 02:54 PM)cpdaniel Wrote: MY first hunch would be that all of the data is EDF format, as this is the standard most commonly used for PSG, ECG and EEG data. There are free EDF readers available on the internet, and the spec is open and freely available as well - just search for edf format with your favorite search engine and you'll find it.
I found edfplus.info which listed many free downloads; unfortunately the ones I tried expected files with certain extensions (*.edf, *.xdf) I didn't have. So I renamed the closest extension .psxdf to .xdf and maXimus worked.
RE: Opinionated Sleeper grows a hose - cpdaniel - 02-07-2016
(02-07-2016, 08:39 PM)GregLawson Wrote: I found edfplus.info which listed many free downloads; unfortunately the ones I tried expected files with certain extensions (*.edf, *.xdf) I didn't have. So I renamed the closest extension .psxdf to .xdf and maXimus worked.
I've got one called EDFBrowser that I've used to read Resmed files - not nearly as useful as Sleepyhead, but it was interesting to look at the really raw data. I've thought about writing some analysis software of my own - but Sleepyhead does a good enough job I expect I'll find other things on which to spend my time.
-cd