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How to copy scan disk - hire a consult?
#1
Is here a way to copy the disk that contains the sleep data? And is there anyone here for hire who is knowledgeable on Sleepyhead data that could look at ALL of my data, and how completely inconsistent it is? Just for an opinion or to narrow down what exactly I have to point out to doctors?

My doctors only look at averages for the month, and then say, "well an average of 8-9 ahi is the best some get" and they don't seem concerned with how completely confusing my stats are.

I've posted here many times about this over the past year, and have not been able to improve my numbers. I've been doing this a year and a half and really just want someone who knows what they are doing look at all my data and maybe figure out this puzzle.

I feel like I'm possessed when I sleep because nothing makes sense. Or perhaps I have a sleep issue that is unrelated to apnea that is just affecting my apnea, idk.
My latest bizarre report


Attached Files Thumbnail(s)
   
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#2
I'm a little confused. Are you asking how to copy a CD or DVD that has your sleep data on it or are you asking if you can copy the contents of the SD card to another medium? Also, it will help if you list your geographic location.

Edit:
Here are some links to aid in organizing you screen shots:

Organize your SleepyHead Charts:
https://sleep.tnet.com/resources/sleepyhead/shorganize

Screen Shot of your SleepyHead Screen:
https://sleep.tnet.com/resources/sleepyh...screenshot
______________________
Useful Links -or- When All Else Fails:
Posting SleepyHead Charts in 5 Easy Steps
Robysue's Beginner's Guide to Sleepyhead
Apnea Helpful Tips
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#3
I thought I could copy the SD card and mail it to someone who could look at it on their Sleepyhead and can zoom in on the areas that they may understand that I do not. I am a complete novice and maybe someone else could shed some light on my confusing and inconsistent reports.

I'm in eastern Pennsylvania
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#4
I think I would recommend you posting a few good screen shots first. A group effort is probably better. . . at least initially.
______________________
Useful Links -or- When All Else Fails:
Posting SleepyHead Charts in 5 Easy Steps
Robysue's Beginner's Guide to Sleepyhead
Apnea Helpful Tips
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#5
Yes, I have done that over the course of the last year and a half. I have had some detailed advice as to narrowing my pressure and raising my pressure, and wearing a soft collar, and sleep position, etc etc.

My problems continue and my numbers vary greatly with no rhyme or reason. I'vet been to a neurologist, a pulmonologist, and discussed it with my family doc. They all just shrug.

Another sleep study is only as good as that night's data, a complete roll of the dice with me. Could be a 2 AHI night or a 23 AHI night, could be full of obstructives, or full of centrals. Nothing is ever consistent. I need someone willing to look at the BIG picture of data, and not just a small snippet if you know what I mean.

I will be losing my insurance in a year, so I was hoping to have this sorted out while I have coverage. But I need someone to really really look at all my data because it varies so much, and maybe someone who is really good at how all the charts fit together could shed some light on what is going on.

A long shot I know, but I'm pretty frustrated, desperate, and the clock is ticking on my insurance.
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#6
(11-27-2016, 07:55 PM)Daisylouu Wrote: Yes, I have done that over the course of the last year and a half. I have had some detailed advice as to narrowing my pressure and raising my pressure, and wearing a soft collar, and sleep position, etc etc.

Yes, but to do it properly you need to follow the directions in the links in Post #2 of this thread. I really think that is your best option.

Quote:My problems continue and my numbers vary greatly with no rhyme or reason. I'vet been to a neurologist, a pulmonologist, and discussed it with my family doc. They all just shrug.

I suggest finding a better doctor who will listen to your concerns and not just shrug.

But to answer your question, yes you can copy your data and send it to someone who can then look at it. Do you know how to create a zip file?

Find someone you trust and send them a PM asking for help.



Sleepster
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#7
Are you using "Scan Disk" to refer to the SD card? "SD" means "Secure Digital," which is basically a deceptive term the manufacturers use. Just say "SD" card and everyone will know what you mean.

As to saving and sharing the data, look at the Useful Links part of my signature line at the bottom of this post and read the link about "how to save or share a copy of your SD card."

As for finding a competent doctor for sleep apnea, good luck. From what I've seen, maybe 5% of the sleep specialists are even marginally competent in terms of anything more than slapping a CPAP on someone, and maybe giving them an ASV machine if they have central apnea. The quality of care for sleep apnea is about like getting technical advice from your local Walmart electronics department.
Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#8
Daisylouu,

I understand your frustrations. Do you know how to make a zip file? If so, I might be able to at least look at some of your data over next weekend.

But I'd also like to ask a few questions as well to better understand what you want help with.

You write:
(11-27-2016, 06:25 PM)Daisylouu Wrote: Just for an opinion or to narrow down what exactly I have to point out to doctors?
I know that we're all ga-ga over numbers here, but in order to gain something out of pointing numbers out to the docs, there has to be a point behind it.

So ...

What did your diagnostic sleep study numbers look like? What was the diagnostic AHI? Were you surprised to be diagnosed with OSA? And what symptoms lead to the diagnostic sleep study?

Next, what goes on at night that you do know something about: How long do you think it takes you to get to sleep each night? How often do you wake up during the night? How restless do you feel your sleep is? In other words do you think you are doing a lot of tossing and turning during the night?

And this as well: How comfortable are you with your mask and machine? I'm not asking about the data; I am asking about physical comfort. Is your mask very comfortable, somewhat comfortable, or not particularly comfortable? Are you dealing with issues like rainout? Dry mouth? Aerophagia?

I assume that you are not feeling as good as you think you should be feeling. So then there are those questions as well: How bad did you feel before you started PAPing? Has there been any subjective improvement at all in how you feel during the daytime? Do you have some decent days and a lot of not so decent days? Or do you feel just as awful as you felt before starting CPAP?

You also write:
Quote:I've posted here many times about this over the past year, and have not been able to improve my numbers. I've been doing this a year and a half and really just want someone who knows what they are doing look at all my data and maybe figure out this puzzle.
I'd like to tease apart two related issues:

1) The night of data that you posted has an AHI = 9.81, which is typically considered "too high". And so yes, it would be nice to bring that AHI down below 5.0. But without knowing more about the tweaks you've done over the past year, there's not much anybody can say about how to bring the AHI down more.

2) Bringing the AHI down below 5.0 may or may not make you feel substantially better. It really depends on whether there are other things going on that the CPAP data by itself does not answer. Particularly in light of this comment:

Quote:I feel like I'm possessed when I sleep because nothing makes sense. Or perhaps I have a sleep issue that is unrelated to apnea that is just affecting my apnea, idk.
Do you feel like you're possessed when asleep because of the data you see in SleepyHead? Or do you feel like you're possessed when asleep because you feel awful when you wake up regardless of what the SleepyHead data says or does not say?

You also write:
Quote:Yes, I have done that over the course of the last year and a half. I have had some detailed advice as to narrowing my pressure and raising my pressure, and wearing a soft collar, and sleep position, etc etc.

My problems continue and my numbers vary greatly with no rhyme or reason. I'vet been to a neurologist, a pulmonologist, and discussed it with my family doc. They all just shrug.
Is the problem your varying numbers or is the problem that you still feel lousy?

In other words, if you had no data at all, would you be complaining to the docs that you still feel just as lousy as you did before starting xPAP? Or has there been some minor improvement in how you feel?

Quote:Another sleep study is only as good as that night's data, a complete roll of the dice with me. Could be a 2 AHI night or a 23 AHI night, could be full of obstructives, or full of centrals. Nothing is ever consistent. I need someone willing to look at the BIG picture of data, and not just a small snippet if you know what I mean.
How many actual sleep studies have you had done? And what did the sleep studies say about your untreated sleep apnea?

How many titration studies have you had done? And what did those sleep studies say about your treated apnea (on those nights) AND your sleep continuity/fragmentation as well.

Quote:I will be losing my insurance in a year, so I was hoping to have this sorted out while I have coverage. But I need someone to really really look at all my data because it varies so much, and maybe someone who is really good at how all the charts fit together could shed some light on what is going on.
For most people, the numbers in SH are going to vary some from night to night. But for most people with a correctly set xPAP, the AHI numbers should mostly stay (well) below 5.0, and yours do not.

Things that can cause the AHI numbers to vary more widely than normal include other health conditions and certain prescription medications. Also a tendency to have upper respiratory problems (anything from colds and flu to more serious problems like asthma or COPD) might also wind up affecting the AHI numbers. In my own data I can often tell I'm coming down with a head cold several days before I get the symptoms because there's often a pretty noticeable increase in my AHI from roughly 1.5-3.0 up to the 4.0-5.0 range.

And then there's this to think about: How often do you tweak the settings? Every few days? Every few weeks? Or every few months?

In order to sort out what's really going on, you may need to keep a sleep journal as well as look at the SH data.

It sounds silly, but some pre-menopausal women find that the AHI sort of tracks with their cycles, although how it tracks can vary and why the hormone cycle would affect the AHI is not something that makes much sense to me.

Other sleep issues, particularly insomnia, can affect the machine-scored data. Lots of time spent lying awake in bed tossing and turning can create an artificially high AHI if the person's wake breathing is sufficiently ragged looking---the machine can't tell you're not asleep and so it scores events that would not be scored on a PSG simply because you are awake when they happen.

Questions about SleepyHead?
See my Guide to SleepyHead
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#9
I think it would have been beneficial to continue this discussion in your last thread. http://www.apneaboard.com/forums/Thread-...r-thoughts I gave you my thoughts, based on the opinion you have exhausted the possible therapy options with your current machine. I think it's time to consider moving to bilevel. I hope this history is useful to robysue and she is able to tease apart the issues better than I was able to. We really want you to get the help you need, but you abandoned that thread in mid-October, and have not given any feedback to those comments.

I don't think we have moved beyond this part of our conversation:

(10-13-2016, 12:45 PM)Daisylouu Wrote:
(10-12-2016, 09:23 AM)Sleeprider Wrote: Daisylouu, I have followed your progress and problems for quite a while. You have considerable obstructive apnea that appears to be sleep stage or sleep-position related. I think we have discussed using side-sleeping and soft cervical collars in the past. Since those strategies are not working and your pressure regularly wants to go above 16, you may be at a point where you simply do not tolerate CPAP pressure at a level that resolves your problem. It might be time to talk to the doctor about moving to bilevel, preferably auto-bilevel. It's also possible the Resmed auto CPAP with EPR might work better for you than the Philips with it's limited Flex pressure relief. You have given this a good effort over a year and still do not have therapeutically acceptable results, so if you're insured, the change is likely covered with a doctor's recommendation.

Have you pursued this with a medical professional?


Yes, I have been in contact both via email and in person with the nurse practitioner, and she keeps saying that my overall average is around 8-9 and I should expect some bad nights, blah blah.

I feel horrible. I can't express that enough to her. She tells me I only weigh 120 lbs. and am not the typical cpap patient. SO WHAT? She keeps praising me for being compliant. But it's progressively getting worse.

I tried the cervical collar. I tried recliner, I've tried the neck pillow in various positions. The strange thing is how it can vary from 2 - 22 when in the exact same position. I'm baffled. And depressed.

I'm going to send another email, I need to come up with the proper wording.

(10-13-2016, 02:12 PM)Sleeprider Wrote: One of the "words", is that you are uncomfortable and unable to sleep with the pressure this high. In auto-mode, your pressure goes to the maximum of 16 frequently or every night. You can elaborate on the side effects of that, but focus on the fact it is difficult to exhale. The way you feel counts, and the nurse practitioner may need to be taken out of the loop by complaining directly to your doctor. You are trying to build an argument that bilevel therapy may be a better solution since it appears your pressure may need to go even higher to resolve the OSA to clinically acceptable levels, which you exceed even on an averaged basis, and greatly exceed many nights.

You should indicate an interest in trying alternative PAP therapies, specifically auto bilevel (Aircurve 10 Auto / Dreamstation BiPAP auto). You may express concern that you are not currently adequately treated and request oximetry monitoring to verify you are properly ventilated at night, or to see if the apparent high apena levels are resulting in potentially harmful SpO2 desaturations. You know how you feel, and they need to take diagnostic and appropriate treatment steps to resolve your extreme fatigue and other symptoms. Simply assuring you that you're fine is not going to cut it. If you can't get satisfaction, get a different doctor. Tell them you feel you need a different, more proactive approach and request a referral (to put them on notice). Fire them.

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#10
Daisylouu you have attracted the attention of the "big guns" of the forum (not me Smile.
I suggest that you are correct in not giving up. I am less concerned about your numbers as I am about your quality of treatment/sleep. I stopped looking at my numbers months ago, they were fine and I was still not sleeping well AT ALL. Very frustrating.

I got help from some of the above people and changed to a BiLevel and not just for the BiLevel feature as these machines have many more settings that I personally found greatly helped my sleeping.

The other thing I found out (by talking with my Doctor, once he actually listened to what I had to say) is that I had COPD on top of Sleep Apnea, oh what fun. COPD does not show up on any CPAP graphs, separate test.

Keep at it and do not give up until there is nothing left to try. You still have some things to give a try. hang in there
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