Still feeling terrible (data analysis)

Ok, I have over a weeks worth of data downloaded now. Below is a few nights ago, most of the nights look the same as this. Based on what I've read here, things look good, but I can't figure out why I'm still so tired. Any help?

I still don't understand the leak "Median", "95th Percentile", "Maximum".

Let's deal with the "easy" question first:

Alshain wrote: I still don't understand the leak "Median", "95th Percentile", "Maximum".

First, it is important to note that Resmed machines and the ResScan software report unintentional leak rates. In other words, an approximation for the intentional leak rate for the mask you are using at the pressure you are using is subtracted off of the total leak data before reporting the leak rate.

Next, in order to understand how the Resmed S9 handles the leak data and how ResScan reports it, we need some numbers. I'll make some "fake" data up since you're numbers are so good as to make the basic mathematics a bit harder to understand.

So let's suppose that you slept with the S9 running for 7.5 hours and we're looking at the overnight data in ResScan or off the LCD for the numbers it shows. Now lets suppose that ResScan says that your Leak Rate data looks like this:

Median = 1.0 L/min
95% = 2.5 L/min [This is the Leak number shown on the S9's LCD]
Max = 15 L/min

Now let's look at what the rest of those numbers actually mean.

The median leak rate = 1.0 L/min means that for 50% of the time the S9 was on, your leak rate was LESS THAN or EQUAL TO 1.0 L/min. And so for 50% of the night, your leak rate was also GREATER THAN or EQUAL TO 1.0 L/min. So in the 7.5 hours you slept with the machine, for 3.25 hours (3 hours and 15 minutes) you had a leak rate of LESS THAN or EQUAL TO 1.0 L/min.

The 95% leak rate = 2.5 L/min means that for 95% of the time the S9 was on, your leak rate was LESS THAN or EQUAL TO 2.5 L/min. And so for 5% of the night, your leak rate was GREATER THAN or EQUAL TO 2.5 L/min. Now it's important to realize that 5% of one hour is equal to three minutes. Since you slept for 7.5 hours, that means your leak rate was GREATER THAN or EQUAL TO 2.5 L/min for a grand total of (3 minutes)*(7.5 hours)=22.5 minutes. That 22.5 minutes of "high leak rates" might be in one giant half hour leak or it could be in several smaller leaks---the only way to know is that to look at the detailed graphs in ResScan. [You find the detailed graphs under the "Detailed Graphs" tab. If you only download "summary data" the detailed graphs won't be there.]

The max leak rate=15L/min indicates that at some point when the S9 was sampling leak data, it detected a leak that was as large as 15L/min. It may have been a very short lived thing---when you broke the seal to scratch your nose for example. Or it could be that on one or two of the big leaks that you had, the leak pretty quickly went from in the neighborhood of 2.5 L/min to 15 L/min and stayed there. But you know for sure that you could not have leaked at a rate of 15L/min for more than about 22 minutes because of the 95% leak rate number and the time the machine was on.

Interpreting the leak rate data is also important:

First, on the Short Sleep Quality menu, if you see Mr. Red Frowny Face, that indicates your 75% leak rate is AT or ABOVE 24 L/min. And according to Resmed's litertature if you are leaking AT or ABOVE a rate of 24 L/min for 25% of the night, the ResMed engineers believe that your therapy and data can and probably are being compromised.

Many people take the 95% Leak Rate to be the key stat Leak data. But it is worth looking at the median leak rate as well, in my opinion. The reason I look at both is that the median leak rate tells me whether I was leaking off and on all night long or not, whereas the 95% leak rate only tells me if my worst leaks were bad ones or not. To illustrate what I mean, let's look at two examples:

Person A sleeps for 7.5 hours and is leaking off and on all night at a rate of 10.5 L/M and for about 25 minutes during the night, the leak rate actually is between 10.5 and 15 L/min. So A's leak numbers look like this:

median=10.5, 95%=15.0, and max=28.0

Now suppose Person B sleeps for 7.5 hours and has NO leaks at all for most of the night, but has ONE 25 minute leak where the leak rates are from 10.5 to 15 L/min during this leak. B's leak numbers look like this:

median=0.0, 95%=15.0, and max=28.0

Neither person's leak rates are large enough to trigger a visit from Mr. Red Frowny Face in the short Sleep Quality menu on the LCD. But Person A is likely to be having more significant problems with comfort due to leaking all night long.

Obviously, the closer to 0.0 your leak rate data is, the better your leak data is. Information from Resmed seems to indicate that leaks above 24 L/min (the RED LINE in ResScan's detailed graphs) are enough to cause problems with the algorithms the S9 uses in order to detect and respond to apneas, hypopneas, flow limitations, and snores. So in any case you really want your 95% leak rate under 24 L/min to insure that you're getting some kind of meaningful therapy. But comfort is as a much of an issue as therapy is in my opinion: Nasty leaks cause most people real discomfort and they frequently cause people to wake up multiple times during the night to fiddle with the mask even when the leak is well below 24 L/min. For me, I don't worry at all if my 95% unintentional leak rate is below 10 L/min unless I had to fiddle with my mask more than once in the night. And if I wake up multiple times needing to fiddle with my mask because of leaks, then the leak rate IS a problem regardless of how low the 95% leak rate is.

And finally to interpret the leak data for the day you provided: It is absolutely superb since both the median AND the 95% leak rate are showing up as 0.0: 95% of the time the machine was running it could not detect any unintentional leaking: In other words, the total leak rate was in the neighborhood of the intentional leak rate for your mask type as selected in the settings menu. The fact that your max leak is 22.8 L/min and close to the Red Line is probably NOT significant---unless a bad (but very short lived) leak woke you up and you couldn't get back to sleep. But more likely, that max leak rate just happened to be cause by the S9 sampling the leak rate when you were fiddling with the mask---maybe resealing it or maybe breaking the seal to scratch your nose for example.

As to why not feeling like you expected with obvious good numbers?
Well, it happens to a lot of us. Many possible factors such as... meds, pain, fragmented sleep, bed comfort, other health issues, etc.
Are you brand new to cpap or have you just upgraded to full data machine? Sometimes it takes a while and improvement is so very gradual we can't see it. Sometimes the other possible factors have to be dealt with.
There is often simply more to feeling good than good numbers.

Now for the HARD, but more important question:

Alshain wrote:Ok, I have over a weeks worth of data downloaded now. Below is a few nights ago, most of the nights look the same as this. Based on what I've read here, things look good, but I can't figure out why I'm still so tired. Any help?

If I recall correctly, you've been using CPAP in one form or another for about six months. So it's not just a case of "you're expecting a miracle and most of us don't get that."

So---where do you go from here and why aren't you feeling better?

In my own case, "not feeling better" has been very directly linked to "CPAP-induced insomnia" and "need to get migraines under control" with a dash of "nasal congestion from seasonal allergies". As I've learned to manage and deal with these other issues, I've slowly begun to start feeling more like my old self.

So the first thing you need to think critically about: Are there OTHER medical issues/problems going on that are capable of making you feel miserable during the day OR make the xPAP harder to use? Many medical conditions have daytime fatigue, lack of energy, and daytime sleepiness as symptoms, and until/unless any existing non-OSA conditions with these symptoms are dealt with, you may very well not be able to feel the full benefit of CPAP even though it is doing positive things for your body's organs and blood vessels. So at six months into CPAP with no sense of improvement, it's worth having a general physical exam and getting a whole host of other things checked out: Vitamin D levels and thyroid immediately come to mind. But arthritis, depression, diabetes, lyme disease, and a whole host of other nasty things often present with "daytime fatigue, pain, exhaustion, daytime sleepiness, and/or general sense of not feeling well". So you need to make sure there's nothing else that might be causing your on-going symptoms.

Next, the data shows you're used the machine for 8 hours on the selected night. But that does not mean you got 8 hours of uninterrupted sleep. So: Can you describe the subjective quality of the sleep you ARE getting?

I don't mean in terms of overall daytime functioning, but rather how do you feel righ after you wake up? Any better or worse than how you used to feel pre-CPAP? And how does it feel different?

And how many times are you waking up during the night?

And how much sleep do you think you're actually getting each night? (And I mean SLEEP, not simply time in bed.)

And do you feel like you're getting sound sleep? Early in my adjustment I was getting AHI and leak figures as good as yours, but on most mornings I could tell that my sleep still felt fragmented and "shallow"---while I felt like I was getting into REM, it most definitely did not feel like I was getting much Stage 3 NREM.

Because learning how to deal with CPAP means learning how to deal with a tremendous number of things that can create sensory overload. And some of us really do take a very long time to get to where our bodies can start ignoring the sensory stuff.

And sleep log might help you pick up some subtle signs of positive changes. Briefly all you need to do is make some notes about what time you go to bed, what time you get up, an estimate of how long it took you to fall asleep, an estimate of how many wakes you had (time of wakes is NOT that important), and an estimate of how much actual sleep you got. You might also want to track your sleep efficiency. Sleep efficiency is equal to (time asleep)/(time in bed). And if this is consistently below 85%, that might partially explain why you are still feeling pretty bad.

That's an odd flow pattern. When you're asleep the flow pattern should be something more of a sawtooth pattern. Triangular in profile, but you've got a plateau, then a roundish inspiration/expiration profile with a flattish top. That indicates to me that you're close to having some flow restriction as the result of insufficient pressure. I wonder what would happen if you bumped your pressure up to 7.

RobySue, good information. Thank you very much. So regarding the 24L/min limit. Since my leaks are so low, would it be reasonable to loosen the mask and make it more comfortable and actually allow it to leak some and still be below the 24L/min? Right now, I don't like this mask cause I have to cinch it down pretty tight to stop it from leaking, but if the leaks actually can happen to a degree without impacting the performance too much then maybe that isn't necessary. If I can simply allow the minor leaks, the remaining problem is, as you mentioned, that the actual leak itself irritates me. I can't stand the feel that it's blowing on my eyes. Sometimes I think I feel a leak when there isn't one. I thinkit's caused by air movement between the two layers of the cushion (the "balloon" effect of this mask), I feel it inside the mask, and I think it's leaking but if I put my finger up there I can't feel it leaking out. So I end up tightening it anyway. Drives me crazy.

Pugsy, I've been using a machine for 7 months now at these same settings, I'm just new to the S9.

I still think I have Fibromyalgia. None of the doctors will say that though because I don't meet the 'perfect criteria' for that diagnosis. All the symptoms are there and all other tests have failed to show any other causes (except the PSG), but I'm a 31 year old male, which would make me a 'rare' fibro case. So they slap me with a "it's got to be the sleep apnea" and stop paying attention after that. Either that or they say it's a somotoform disorder and refer me to a psychiatrist.

For the improvement being gradual, no, not in this case. There has been no improvement, there has been further deterioration. When I started CPAP at the beginning of this year, I didn't feel as bad as I do now, which is why I went into denial, (and really I'm still there), as to whether or not I actually have apnea. The deterioration was not small either. When I started CPAP I had minor discomfort. Now I'm counting myself lucky I haven't been fired from my job yet or gotten into a car accident. I feel like since starting CPAP I've gone from being irritated by a problem to being completely disabled by it. Now, I'm not saying the CPAP is doing that, it's probably just coincidental that it started getting worse when I started CPAP. I want to give this every possible chance to succeed, but it just isn't happening. I have a feeling I'm going to have to collapse somewhere or end up in that car accident before a doctor will take me seriously.

Slartybartfast wrote:That's an odd flow pattern. When you're asleep the flow pattern should be something more of a sawtooth pattern. Triangular in profile, but you've got a plateau, then a roundish inspiration/expiration profile with a flattish top. That indicates to me that you're close to having some flow restriction as the result of insufficient pressure. I wonder what would happen if you bumped your pressure up to 7.

Sawtooth? Or perhaps you meant Sine.

I had the sine wave pattern that night (the top one in the image that Pugsy put here: viewtopic/t66490/Example-Graphs.html ). It was immediately following the leak that cause the 22 maximum in the image ~3am. After 20 min or so it went back to what you see there. When I get home I can post images if need be.

Is your sleep fragmented? Do the leaks wake you up? You mention Fibromyalgia like symptoms..pain, discomfort, tossing and turning in bed? Wake up often or when turning in bed?
Been down the "pain disrupting sleep" road myself. I can tell you for certain it will strongly mess with how you might feel the next day.

Since you have been using machine for several months and no better and maybe worse, I would suggest taking a good hard look at other possible contributing factors. Try to isolate and work on improving what might need improvement. Getting used to the machine is easy part. The detective work is hard part.

Pugsy wrote:Is your sleep fragmented? Do the leaks wake you up? You mention Fibromyalgia like symptoms..pain, discomfort, tossing and turning in bed? Wake up often or when turning in bed?
Been down the "pain disrupting sleep" road myself. I can tell you for certain it will strongly mess with how you might feel the next day.

I don't think so. Occasionally I'll wake up, but only maybe once a night. Usually around 3am and then I go back to sleep. The pain goes away with sleep, but comes back by 10-11am the next morning. The fatigue never goes away. Chronic migraines are the same. They fade in and out and I usually go to bed when they stop and they come back the next day, but late in the afternoon. Sometimes they are "ice pick" style.

Pugsy wrote:Since you have been using machine for several months and no better and maybe worse, I would suggest taking a good hard look at other possible contributing factors. Try to isolate and work on improving what might need improvement. Getting used to the machine is easy part. The detective work is hard part.

Yeah that's what I've been doing lately. Been concentrating in three areas outside of medical practice...

1. Ergonomics. I work primarily behind a computer all day and I realized some rather atrocious practices. (My monitor was almost 6 ft from my face, worse still I found out 2 months ago I have a mild astigmatism).
2. Exercise/Weight Loss. I was doing better at this before this year when things started getting worse, but when the pain ramps up it's hard to convince yourself to continue. Lost 30lb last year between August and October (who loses weight during November/December ), gained 15 this year thus far. For a while I thought I it was shin splints, but my arms have the same pain.
2. Stress. I've been trying to get away when I can. Gonna be on vacation tomorrow, going to get a massage. Might help with the pain, but at the very least maybe help me relax a bit. Still planning my camping trip in Galveston, but with the drought, it's too hot right now... even for the beach.

Prior to cpap therapy did you experience nocturia? Wake up having to empty your bladder during the night?

When looking at your reports do you see groups of events or are they separated randomly over the night?

Do you ever have neck pain?

Do you have copies of your sleep studies? Do you know how low your oxygen levels went?

When was your last complete physical? Do you take any other meds even OTC? If so what?

Pugsy wrote:Prior to cpap therapy did you experience nocturia? Wake up having to empty your bladder during the night?

Yes, but usually early morning, an hour before I would have gotten up for work anyway. Not all night long.

Pugsy wrote:When looking at your reports do you see groups of events or are they separated randomly over the night?

I'll get back to you on that when I get home from work.

Pugsy wrote:Do you ever have neck pain?

Yes, more like stiffness or tightness.

Pugsy wrote:Do you have copies of your sleep studies? Do you know how low your oxygen levels went?

No, I can get them but it will cost a lot. Apparently the cost of paper went up to $10 a sheet recently.

Pugsy wrote:When was your last complete physical? Do you take any other meds even OTC? If so what?

Physical... I've lost track. I've seen so many doctors, so frequently. Lots of blood tests (everything auto-immune), leg x-rays, full cerebral and spinal Magnetic Resonance Imaging, Electromyograph. Full cardiac workup (Chest x-rays, Electrocardiograph, blood levels)... twice (I admittedly panicked when the heart palpitations started). I've probably forgotten something else.

Medication... Over the years? Everything you can get from pharmacy. Right now? Nothing but vitamins.

Oh yeah, I forgot the cost of study copies. Do you have a primary doctor who might have received at least the summary?

I was tossing out questions to see if something stood out. Like with the sleep study what were the AHI numbers, related to position, and what was O2 worse level. Summary might include these numbers and is one or 2 pages and often the referring doctor will have a copy.

The groupings question was asked because sometimes a person had what I call clusters of events and the clusters can impact how we feel even though the overall AHI is quite acceptable. Back when I was first starting therapy I had these clusters (I am much worse OSA wise in REM sleep) and felt crappy with AHI of 3. It wasn't till I got the clusters broken up did I see any (even small) improvement.

Also even chronic low level pain or discomfort has the potential to disturb sleep and anything that disturbs sleep can sure mess with how we feel the next day. I actually saw minimal improvement for nearly 18 months because of pain.
Great numbers. The nocturia ceased immediately but that was the only huge marked change that I saw. Other stuff was very gradual. In my case I knew the pain was disrupting my sleep and thus affecting how I felt the next day.
It may not be your issue but I mention it because it was part of my detective work. I also had daily headaches, some quite severe. They improved but did not disappear with the good numbers. I have bad neck so it is reasonable to assume that some of my headaches are related to my neck. Often when it hurts more than usual I will have a headache.

So I was just trying to think outside the box a little to see if anything else could be messing with how you feel.

Pugsy wrote:So I was just trying to think outside the box a little to see if anything else could be messing with how you feel.

Well, I do appreciate all of your efforts, I will take another look at the data after work today. My headaches haven't been too bad ever really, just annoying. I classify them as migraines only because the symptomatic location of the pain (usually the right side of the head above the ear). But the level of pain has never been really bad, no ocular or auditory problems when they occur either.

Just throwing this out.... you mentioned lots of bloodwork, but did they do a full thyroid panel or a full Vitamin D panel? The D should be the 25hydroxy test....especially for D3. You might also have the magnesium checked as we are mostly deficient in that and it is totally connected to aches and pains.

Emilia wrote:Just throwing this out.... you mentioned lots of bloodwork, but did they do a full thyroid panel or a full Vitamin D panel? The D should be the 25hydroxy test....especially for D3. You might also have the magnesium checked as we are mostly deficient in that and it is totally connected to aches and pains.

Yes, actually one of the first things they did. It came back positive for Hashimoto's. But eventually I got suspicious and quit taking the pills and month later asked them to run it again, came back negative. Had it run several times since and it's always negative.

Vitamin D, yes. Again, came back very deficient. Put on 10000U pills. Next test looked fine, still take Citrical.

Not sure about magnesium.

Currently I take a Multi vitamin, B12 "dots" (the ones that dissolve on your tongue), Citrical, and Fish Oil. I would think the multivitamin would have magnesium in it, unless it's special like B12 where it doesn't absorb 'normally'.

EDIT: I have a REALLY high fiber diet. I eat Kashi every morning, 100% whole wheat turkey sandwiches for lunch (except weekends), a Granny Smith or two a day, nuts, vegies with dinner. I've been doing this since I started getting serious about weight loss back in October. I'm not elderly. I'm Caucasian (supposedly deficiency is more common in African American). I'd be surprised if my magnesium was low.