can anyone review my DATA for me please

[FROGFATT]

hey peoples i was wondering if any CPAP GURU would review my data for me if i send them the files direct to your email please help me , I CANT STAND SEEING ANOTHER SLEEP CLINIC AGAIN I AM OVER IT AND VERY STRESSED

[chunkyfrog]

You may use an image server like photobucket, to link jpg's (or is it pdf's?) directly to your post,
and we can all see them. Just mask any personal info in an image editor.

[Nick Danger]

I agree. Please post your graphs to the forum - that way we can all learn from them.

[FROGFATT]

happy for anyonne to post my data up for everyone to see i just cant get sleepy working on my pc

[robysue]

FROGFATT,

Check your PMs---I'm willing to look at your data tonight and post some stuff here for you.

As for problems with getting SleepyHead installed and up and running on your PC: Can you describe what problems you are having? If you are getting error messages, what do they say?

[robysue]

Frogfatt is having trouble getting SH installed and working. S/he sent me the data and asked me to look at it and post some comments. I'll post some relevant detailed data in a subsequent post. In this first response, I want to make some overall comments from the summary data on Frogfatt's machine.

Summarizing the overall data
Frogfatt, the summary data shows you starting CPAP on Feb. 13. From Feb. 13-March 9, there is only very basic summary data available at this point because you are using a Resmed and when you made the copy of the SD card's contents, all the detailed data from that week had already been over written. (The Resmed S9 keeps the detailed data (except for flow rate) for 30 days and the flow rate data for 7 days before overwriting it.)

From Feb. 13 to Feb. 28, your machine was in APAP mode with a pressue range from 6-20. The AHI data from this data ranges from 0.1 to 2.27, with most of the events being scored classified as OAs and Hs. Most days show at least 6-7 hours of usage, which is pretty good for a new PAPer. The summary data does not include any 95% leak rate data or 95% pressure level data that SleepyHead can make sense of. (It's possible that ResScan might report that data, but I don't have ResScan installex on the computer I'm using right now.)

On March 1 the settings were changed to APAP at 16-20; on March 2 the settings were APAP 14-20; and you continued to use APAP 14-20 through March 6. The AHI data still looks good on this week---except for March 5. But on March 5 you only used the machine for a grand total of 9 minutes with a AHI = 33. My guess is that you were awake the entire 9 minutes and that makes the AHI = 33 irrelevant in terms of how well your PAP therapy is going. The other nights at 14 (or 16) to 20, your AHI was in the 0-2.79 range.

On March 7 the settings were changed to CPAP at 17.4. Apparently fixed pressure at that level was too much since you changed the settings back to APAP 7-20 on March 8. You slept without the machine on March 9 and used APAP 7-20 on March 10. But on March 10, your AHI = 5.44. Apparently the "AHI > 5" spooked you enough to tweak the settings again: On March 11 your settings were APAP 15-20, but the AHI still remained above 5.0.

On March 12, you lowered the min pressure back to 10, and from March 12 to March 13. The AHI remained above 5.0 (but below 10.0). On March 14 you turned on EPR and chose to set EPR = 3. On March 15 you again lowered the min pressure to 7 and you kept EPR = 3. On March 15-16, you were using APAP 7-20, but the AHI both nights was above 10.0. You bumped the min pressure up to 9 on March 17, but the AHI = 8. You lowered the pressure back down to 7 on March 18. You kept EPR = 3 throughout this time frame.

You continued to use APAP 7-20 from March 18-March 25, but the AHI remained above 5.0 most nights, with the smallest AHI on these days being 3.46. EPR was still set to 3 until March 22, when you set EPR = 2.

On March 26 you bumped the min pressure all the way up to 14 and left it there from March 26 to March 29, but the AHI remained between 6.0 and 7.0. On March 29 you dropped EPR to 1. and on March 30 you bumped the min pressure up to 15, but simultaneously increased EPR to 2 and you left the settings at APAP 15-20 from March 30 to April 6. The AHI's range from 2.87 to 6.86, with several of them over or near the 5.0 line.

You bumped the min pressure up to 16 on April 7 (and left EPR = 2), where you've left it. The AHI for April 7 was 3.42 and the AHI was 5.22 on April 8. You only used the machine for 37 minutes on April 9, so the fact that you have a 0.0 AHI for April 9 is irrelevant.

My overall impressions about the summary data
My first impression is that you are doing a lot of dial wingin'. While I can understand your frustrations with the fact that the AHI seems to be tending in the wrong direction, changing the settings every few days is not giving your body enough time to settle in and get used to any one script.

One big question for you to consider: What was different in Febuary when you were first starting out? You were using an APAP range of 7-20 with reasonable AHI's---providing you were sleeping. But for some reason you made a really large change in the minimum pressure setting on March 1: You went from 7-20 to 16-20. That's a huge jump in minimum pressure. Why did you make such a large jump?

It's not at all clear why you started dial wingin' on March 1. Discomfort? Or something else?

It's also not clear why your AHI started to increase around March 10. But there's a clear increase in AHI that starts on March 10.

On the 21 nights between Feb. 13 and March 8 where you actually used the machine for at least 5 hours, your AHI ranged from 0.0 to 2.27, and on all but Feb. 13, the AHI was below 1.5, and on most of the nights the AHI was below 1.0.

On the 27 days since March 10 where you've actually used the machine for at least 5 hours, your AHI ranges from 2.57 to 12.47. On 20 of these 27 days, the AHI > 5. So something has clearly changed since March 10. The question is what has changed? Is it just a lot of ineffective dial wingin'? Or are you sleeping more on your back? Or are you getting more REM? Or are you simply spending more time in bed with the mask on and NOT sleeping?

And my guess is that this rise in the AHI data along with continued discomfort had led you to continue the dial wingin'. But the dial wingin' is not working very well.

So at this point, my advice on what to do at this point is: Quit the dial wingin' for at least a week or two. It's not clear what setting you should use for the next couple of weeks, but you do need to give your body the time to really acclimate to PAP. And then after 2 weeks of data at ONE set of settings, you need to dial wing in a much more controlled way: Change ONE parameter (either min pressure or EPR, but not both) at a time and give your body at least a week before making more changes. It's important to remember that even those of us with optimized therapy can have a bad night now and then. So if you see a few days with an AHI a bit higher than desired, you need to remember that you don't need to change the setting immediately. Rather than reacting immediately to every "bad night", try your best to only make one change to the settings each week.

You also need to work on using the machine every night, all night long. In the data on your card, there are 7 days where you used the machine for less than 2 hours. There are several more days that show very large gaps in the data where you took the mask off.

Now I'll go out on a limb: You started dial wingin' because of discomfort rather than worrying that your AHI data not good. The discomfort may have been night time discomfort when using the machine. (Can't breathe, can't fall asleep, dries my nose out, mask is not comfortable, exhaust flow bothers me, etc.) Or the discomfort may have been daytime discomfort---i.e. not feeling any better on CPAP than before or feeling worse (possibly MUCH worse) since you started CPAP. In either case, you were hoping that if you could only find the magic settings, everything would quickly fall into place.

Unfortunately, for some of us, it takes quite a while to start feeling comfortable sleeping with the equipment. And it takes some of us a very long time (as in months, not weeks or days) before we start feeling better. And the healing doesn't start until after you learn to sleep with the machine.

Now, for the big question: If you're going to quit dial wingin' for a week or two, what are the settings that you should use?

That's not really clear from the data you've emailed me. On paper you had good numbers in the wide open range of 7-20, but it's clear the machine wants to hang out up around the 17-20 range due to flow limitations and snores as much (or more) than the events themselves. So I'd ask you: Of all the different settings that you've tried, which one(s) were MOST comfortable in terms of trying to get to sleep?

More information about what I'm seeing in your detailed data and some sample detailed data in a later post.

[robysue]

Frogfatt,

It's getting to be time for me to turn off the computer and other blue light devices so that I can more properly relax before bedtime. I'll post more tomorrow NIGHT about what I see in the last few days of your detailed data.

[FROGFATT]

far out u can really write a nice detailed report that u so much for reviewing it u have no idea how much i appreciate people like u ROBYSUE , i have been feeling like shit most days since beginning cpap late last year , ok i really need to quit the playing with the settings and you are right i have been trying to find that magic number , most nights i try to get to bed early as i can but during the night i feel i sleep very lightly , goto bed round 10 and i usually fall asleep real quickly if i stop playing around with my IPAD gotta stop taking it to bed

problems i have been having lately is i don't feel rested that's why i play around with the settings so much , sometimes during the night i get the worst back pain and i turn off my machine and my mask and this takes the pain away , i have never suffered from back pain in my life and i have a really good bed , and i only started getting the back pain since i started the cpap back pain subsides after 10 mins with out cpap and i can go back to sleep yet i suffer for it in the morning when i wake feel so drowsy headaches shoulder pain u name it fall asleep at work . i toss and turn all night but from what my partner states i sleep mostly on my back sleeping on my side cuases a lot of discomfort for me

i still suffer from daytime sleepiness i can fall asleep anywhere even at the traffic lights while waiting for the lights to go green this has happened to me 3 times in the past year i even fell asleep at the birth of my first child LOLwhile my partner was screaming in labour ,

in my home town in Darwin Australia we have only 2 sleep specialist/doctors and 2 DME's as u YANKS call them no offence but we aussies call u Americans yanks . the DME here are useless i been to see them plenty of times and they explain nothing and charge $100 to do a download and $20 service fee to make any adjustments to the machine if they see fit , they would always tell my treatment was optimal charge me $100 and see u next month so i quit going to see them as they just ripping me off in my mind even when i would explain to them my problems they would not listen , and the two so called sleep doctors we have here aint much better than the DME's , the doctors come from a foreign land India/pakastain cant speak English properly and there attitudes stink they are very un-Australian they charge $300 each visit and the last couple sleep studies i have had have costed me $1400 each even the home sleep study costed me $250

i was basically forced to buy a machine that's costed me $2500 the DME's here only talk when u start waving money infront of them , i am reaching a point where i want to kill myself to get a decent sleep they say plent of time to sleep when u r dead and i wish i could end my life so i can basically stop this pain that i am feeling the only thing that's stops is my two young children i live for them and i have told my partner that many times that's how bad i wanna sleep/die . i don't no what else to say anymore ,


last night i set my machine to min 17 and max 20 for pressure will that help me ?
i don't get problems with mask discomfort get dry mouth every night but that was normal even with out the machine and before cpap begain
i am over spending money on this stuff but realise i need to stick with it i am so desperate i really am desperate , just look me typing away right now , i can spell for shit i cant even use punctuation properly cause i feel like a zombie i feel FUCKED i feel depressed . how the fuck i manage to keep my job in the Australian government amazes me ............ PS sorry about the language i am just so done feeling like i do and i am sure people on this forum understand , but people that don't have severe OSA have no bloody idea what its like

[robysue]

ok i really need to quit the playing with the settings and you are right i have been trying to find that magic number

The thing about chasing a magic number is that it can take some our bodies several days or even a week or more to fully adjust to even a relatively small change in settings. And once therapy is optimized, there are still going to be some "bad" nights, relatively speaking. By changing the settings all the time, you're not giving yourself a chance to fully acclimate to any setting to see if it will work long term for you.

, most nights i try to get to bed early as i can but during the night i feel i sleep very lightly , goto bed round 10 and i usually fall asleep real quickly if i stop playing around with my IPAD gotta stop taking it to bed

Quit taking the IPad to bed with you. Seriously. Playing with the IPad in bed is hurting other aspects of your sleep. The blue light from the IPad (and other electronic devices) can mess with the melotonin cycle and doing anything in bed except sleep and sex can make it harder to both get to sleep and stay asleep.

When you go to bed around 10 are you usually sleepy? Or just exhausted? There is a difference. If you're too exhausted to stay up, but you're not yet sleepy, that can create problems with both getting to sleep and staying asleep. If you bring the IPad to bed because you're not yet sleepy, but you are too tired to do anything, then play with the IPad in a different room while relaxing on your favorite couch or in your favorite chair. Go to bed when you are sleepy and go to bed without the IPad (or your smart phone).

problems i have been having lately is i don't feel rested that's why i play around with the settings so much , sometimes during the night i get the worst back pain and i turn off my machine and my mask and this takes the pain away , i have never suffered from back pain in my life and i have a really good bed , and i only started getting the back pain since i started the cpap back pain subsides after 10 mins with out cpap

I can think of three things that might be associated with what you are calling back pain.

1) Some people quit moving around in their sleep once they start on PAP. And if you've always been an active sleeper who changes positions a lot, the sudden change to not moving (at all) can lead to stiffness and pain. Particularly if you fall asleep in a position that is uncomfortable in the long run. This problem is usually self-limiting. Once you're sleeping well with the machine, the body starts to move the necessary amount during the night so that you don't wake up stiff.

2) Some people are afraid to move much with the mask on for fear of starting a leak. And so they'll tense up and stay in one position while dozing in and out of a light sleep because they really want to move around, but they're afraid to. And then when you actually do fall asleep, it's in an awkward position that is designed to prevent leaks rather than encourage good sleep. "Not moving because you're afraid of leaks" is a behavior pattern that has to be unlearned. It turns out that if you have a mask that is the correct size and is well fitted and works for you, the seal won't be broken by moving around in bed. And it's also ok to not worry about every single leak. Even a large leak every now and then is not a huge problem.

3) It takes some effort to exhale against continuous positive air pressure. This requires additional work from muscles in the chest and back. And until the muscles get used to doing it, there can be muscle pain. (It's the CPAP equivalent of tired/achy legs when you first start a running program.) Usually this is self-limiting. In other words, once the body fully acclimates to PAP, the muscle soreness goes a way.

Here's what I'd suggest doing when you wake up with the back pain: Go ahead and take the mask off for a few minutes. Move around a bit in bed. Get up and stretch by going to the bathroom if you have to. But after you've relaxed a bit and the pain has gone a way, put the mask back on and see if you can get back to sleep in a timely fashion. Try falling asleep in a different position than the one you woke up in.

and i can go back to sleep [without the mask] yet i suffer for it in the morning when i wake feel so drowsy headaches shoulder pain u name it fall asleep at work .

For folks with severe OSA, sleeping even one or two hours without the mask during the night can "undo" the good of sleeping with the mask for the rest of the night. The apneas can start up at your diagnosed level just as soon as you're sleeping without the mask.

How symptomatic were you before you started CPAP? In other words, what lead to you getting a sleep test in the first place?

i toss and turn all night but from what my partner states i sleep mostly on my back sleeping on my side cuases a lot of discomfort for me

If you don't like sleeping on your side, then don't do it. Yes, some people's OSA is much worse on their back than on their side. But if the prescribed pressure is sufficient for preventing (most) of the apneas during supine REM sleep, there's nothing wrong with sleeping on your back as long as you use your machine.

i still suffer from daytime sleepiness i can fall asleep anywhere even at the traffic lights while waiting for the lights to go green this has happened to me 3 times in the past year i even fell asleep at the birth of my first child LOLwhile my partner was screaming in labour

Pardon my smile, but the thought of my hubby managing to sleep through the birth of our first child while I was screaming bloody murder is humorous. The fact that you did it is real evidence of just how sleepy you remain in the daytime.

First a story to let you know that you are not totally alone in this: Before I was diagnosed with OSA I did NOT have a problem with excessive daytime sleepiness, but I did have a lot of issues with tiredness and daytime pain issues. I went for a sleep test only because hubby reported that he was seeing me stop breathing multiple times a week. Once I started PAP, I developed severe, excessive daytime sleepiness, including the fear and sensation of falling asleep at traffic lights. And momentarily falling asleep in meetings. And worrying about falling asleep in a class that I was teaching---i.e. I felt as though I was taking micronaps at the board while lecturing. At work people were asking me what was wrong since I looked like death warmed over. And as sleepy as I was during the daytime, just as soon as I put the mask on at night, I could not seem to get to sleep in a timely fashion and I could not seem to stay asleep during the night. On the rare occasions where I did fall asleep soundly with the mask on, I was dead to the world and very difficult to get up the next morning. And this went on for several months. Eventually the sleep doctor changed me from APAP to BiPAP (which helped some) and the PA I was working with continually suggested that I use Ambien, which I resisted. Eventually the insomnia aspect of my misery became large enough where I was willing to do some serious CBT-Insomnia along with some (minor) use of Ambien. And that allowed me to finally get over the major hump of teaching my body how to fall asleep quickly with the dang alien on my face and how to get back to sleep in the middle of the night when I woke up.

I'll be honest: I still don't sleep as well as I'd like after 4 1/2 years of PAP. But I also know that I've got more than one thing wrong with my basic (untreated) sleep. In addition to the OSA, which is well managed by the BiPAP, I've got real problems with delayed sleep phase and real problems with plain old sleep efficiency---i.e. I have a lot of "spontaneous arousals" that are NOT triggered by apnea/hypopnea events. And those spontaneous arousals have shown up on every one of my five sleep tests, along with far more "wake after sleep" than should be present. So after 4 1/2 years of PAPing, I know that I'd feel even worse if I wasn't using my machine, but I also know that I have to treat/manage the other problems as well as I can.

The point of telling you this is to get you to understand that PAP fixes the OSA, but it only fixes the OSA. If your sleep is bad for other reasons in addition to the OSA, the PAP will only fix the OSA-part of the bad sleep. You still need to fix the other causes of the bad sleep before you'll start to feel better.

And you have to be sleeping well with the machine before the healing of the OSA-related damage can start. And it can take time---as in weeks and months---of sleeping well with the machine before you start to feel better.

in my home town in Darwin Australia we have only 2 sleep specialist/doctors and 2 DME's as u YANKS call them no offence but we aussies call u Americans yanks . the DME here are useless i been to see them plenty of times and they explain nothing and charge $100 to do a download and $20 service fee to make any adjustments to the machine if they see fit , they would always tell my treatment was optimal charge me $100 and see u next month so i quit going to see them as they just ripping me off in my mind even when i would explain to them my problems they would not listen ,

DMEs are the same worldwide. But to add insult to injury, the Austrailian DMEs are much more expensive: In other words, plenty of Yanks have shitty service from their DMEs, but our out of pocket expenses are usually significantly less than yours.

However, now that you've found us, hopefully you can get some help from cpaptalk and start figuring out how to get your therapy on track.

and the two so called sleep doctors we have here aint much better than the DME's , the doctors come from a foreign land India/pakastain cant speak English properly and there attitudes stink they are very un-Australian they charge $300 each visit and the last couple sleep studies i have had have costed me $1400 each even the home sleep study costed me $250

Do you have copies of the sleep study reports? If you don't you should try to obtain them. It would be very useful for you (and us) to know if your diagnostic sleep study (or studies) showed whether you have signficantly more OSA on your back or in REM. That can help in figuring out what to do with residual clusters of events, which you are still having right now.

i was basically forced to buy a machine that's costed me $2500 the DME's here only talk when u start waving money infront of them , i am reaching a point where i want to kill myself to get a decent sleep they say plent of time to sleep when u r dead and i wish i could end my life so i can basically stop this pain that i am feeling the only thing that's stops is my two young children i live for them and i have told my partner that many times that's how bad i wanna sleep/die . i don't no what else to say anymore ,

Please don't be insulted by what I say here: I take this kind of language very seriously having lost a cousin to suicide many years ago.

If you are really at the point where you are thinking of "killing [yourself] to get a decent sleep" and you've talked to your partner many times that you're feeling so "bad you wanna sleep/die", you need to take care of your mental health as well as your physical health. If counseling is out of the question, please still consider bringing how you feel up with your primary care doctor---particularly if you trust him/her.

It is also worth talking with your primary care doctor about whether using Ambien or some other prescription sleep medicine in addition to your PAP may help you both get to sleep more quickly and sleep more soundly during the night.

last night i set my machine to min 17 and max 20 for pressure will that help me ?
i don't get problems with mask discomfort get dry mouth every night but that was normal even with out the machine and before cpap begain

If you can get to sleep at 17-20 without too many problems, then yes, that's a reasonable APAP range to try for the time being: Your machine clearly wants to keep you at close to max pressure for much of the night because of flow limitations, snoring, and some clusters of events. (I'll post on that tonight MY time.) But try to stick with this range for at least a full week before fiddling with the settings again. (And yes, I know that's hard when you're feeling miserable.)

As for the dry mouth: Are you a mouth breather? And what mask are you using?

i am over spending money on this stuff but realise i need to stick with it i am so desperate i really am desperate , just look me typing away right now , i can spell for shit i cant even use punctuation properly cause i feel like a zombie i feel FUCKED i feel depressed . how the fuck i manage to keep my job in the Australian government amazes me ............

I can understand how you feel. I could easily have written this passage myself back in October 2010 through March 2011.

It helps to NOT be so hard on yourself. It's not your fault that you have OSA and it's not your fault that you are having a much tougher time than most people do in figuring out how to make this crazy therapy work for you. Keep in mind that you've done three major POSITIVE things:

• You have NOT given up (yet). Even though you want to. Even though you're miserable. You still find the strength to keep on trying to make it work.
• You are beginning to take charge of your own therapy. You're (properly) fed up with the DMEs and the unhelpful sleep docs. But instead of chucking the machine in the closet and just giving up, you've decided to try to learn enough about your condition and the settings on your machine to properly manage your OSA yourself.
• You've found cpaptalk.com. Since your DMEs and sleep docs are of no use to you, it's important to have a source of support while you continue in this journey. And a place where you can ask questions. And a place where you can vent at times. As long as you're willing to continue trying to make this crazy therapy work, we'll be here for you and we'll try to make useful suggestions.

[yaconsult]

robysue - WOW, just wow! What a magnificent job you are doing here!

frogfatt, you've just got to hang in there. It CAN get better! You've already gotten wonderful advice. Many people find that it takes a while to get used to the therapy and to adjust to any changes made in pressure and other settings. With the help you get here, you should be able to narrow down the best settings that work for you. Just don't expect that there is a magic setting that will result in perfect therapy. It is very much a process. Your body needs to adjust to being on the machine. And then you will be able to slowly tweak the machine to optimize your therapy.

Keep posting and letting us know how you are doing. Many here have had the same issues you have and it can really help to find out how they got over the humps. We can also help you figure out how to get sleepyhead installed and working for you and show you how to upload the graphs from it so people on the forum can see them.

Hang in there!