Misdiagnosed?? and need help.

[dooger54]

Looking for advice/help on handling my new CPAP "experience". I was diagnosed in November 2015 after a 3 night home sleep study by AccuSom. My insurance company required the home study. I went because my wife has been concerned about the quality of my sleep for years. I am a very active sleeper, I toss and turn constantly all night. Unlike the lucky people out there, I can't remember the last time I went to bed and woke up in the morning without waking during the night. That has happened maybe a handful of times in the last 30-40 years ( I am 61). So to keep the peace I consented to the sleep study.
Please understand I do not have what is considered the "normal" symptoms of sleep apnea. I rarely snore, am not overweight (6', 180 lbs), and am not tired during the day. I don’t fall asleep during the day and rarely take naps. So when I received the results of the three night home study I was shocked. I was diagnosed with severe sleep apnea. Here are the stats from the three nights:

Total recorded time: 21.15 hours for 3 nights
Highest AHI 3% - 36.2 Highest AHI 4% - 30.7
Total number of apneas: 429
Total number of hypopneas @ 3%: 230 @4%: 102
Oxygen desaturations <90%: 1.34%(night 1) .65%(night 2) 3.16%(night 3) of recorded time
Lowest O2 saturation for all three nights: 83%
Average heart rate: 67 b/m Lowest heart rate: 53 b/m

The next step was the titration sleep study at our local hospital.
Total recorded time was 400 minutes, with a total sleep time of 278 minutes (70% sleep efficiency)
I had 39 awakenings. Sleep stage summary:
Stage N1 : 25% Stage N2 : 56% Stage N3 : 0% Stage R 19% Total NREM: 81.1%
I had a total of 7 Obstr. Events, 5 Centrals, 4 Hypopneas for 16 total NREM events
I also had 20 limb movements and 487 periodic limb movements (index 105.1)

The recommendation from the titration was a CPAP set at 8. So I purchased a Resmed AirSense 10 Autoset from CPAP.com and started using it December 23. I have used it every night since then. I initially bought and used the Swift FX nasal pillow. I am not a mouthbreather but have had problems with my mouth opening and leaking air. I am now using a chin strap with a mouth guard to limit the leaks. I also bought and am trying the Airfit F10 FFM but have had significant leakage because of my goatee. It looks like the only way to remedy that will be to shave my goatee, which I can do.

I can post the CPAP Statistics from Sleepyhead. Last night was a prime example of my problems. My AHI was 11.62 and most of that was from CA’s. I had 66 CA’s, 5 obstructive and 15 hypopneas. Also 2 Cheyne Stokes events.

Obviously something is not working right. I am most concerned about the CA’s. The first three nights I had 80, 61 and 65 CA’s. Do I have the wrong machine? I sure hope not, since I paid for it out of my pocket ($5000 deductible on my insurance). Is the pressure wrong?

I did note that when I used the FFM my CA’s went way down. I had 0, 7, 2,1,7 the five nights I used the F10. Problem with that was my leak rate averaged about 45 each night.

I have no idea where to go from here. So far my doc has not been any help.

[dooger54]

I notice the attached report from Sleepyhead is almost unreadable. How can I fix that?

[IDontSnoreISwear]

Sounds like you already know.

If I were you I'd shave the goatee, use the FFM for a week and see what your numbers look like.

[Julie]

And I'm curious why you haven't tried Apap mode with two settings - it gives a better idea of how things are going and your machine apparently has auto mode available.

[Sleeprider]

Dooger, it would be more helpful if you would post the detailed graphs: Events, Flow Rate, Pressure, Leaks, and perhaps Flow Limitations. Follow this tutorial on how to post your charts: https://sleep.tnet.com/reference/tips/imgur

You may want to change the title for Cheyne Stokes Respirations (CSR) to Periodic Breathing (PB). This can be done under File/Preferences/Events tab in Sleepyhead.

From the summary data, your overall AHI average is not that bad, and the presence of CA may be an expected consequence of your restless sleep and excessive PLM. It is fairly normal to record CA when you are tossing, turning and moving in bed, and is not necessarily a health issue, but normal sleep/wake junk (SWJ). You can search on the forum and find many posts related to that topic.

Are you being treated in any way for restless leg or PLM? Are there any drugs or other health issues that might be affecting sleep or respiration?

[LSAT]

If you paid $5000 for that machine, you really got screwed.

[Pugsy]

I did note that when I used the FFM my CA’s went way down. I had 0, 7, 2,1,7 the five nights I used the F10. Problem with that was my leak rate averaged about 45 each night.

The problem with this AHI is the large leak numbers...depending on how much time was spent above 30 L/min it's possible that the leak prevented the machine from sensing and recording any apnea events and that lack of CAs could simply be the machine missing the events. That's the problem with data when the leak is excessive...we don't know if the numbers are low because not much happened or they happened but the machine just missed them.

There's not enough information here yet to make any conclusions about whether or not your centrals are a problem or not.
There is the fact that there is a small % of cpap users who don't have centrals during the diagnostic sleep study but will have centrals develop as a result of the cpap pressure and while it is commonly thought of as only with pressures over 10 cm, it really can happen with any cpap pressure.
We call it complex sleep apnea and you may or may not be part of that small % who develop it as a result of cpap pressure.
The number of centrals/Clear Airway events that you are showing does bear watching for sure.

Can you post the daily detailed SH graph for last night showing the AHI and statistics on the left side and on the right side these graphs...Events, Flow rate, Leak and Pressure?

Do you spend a lot of time awake with the mask and machine on?

If you are indeed one of those people who develop complex sleep apnea as a result of cpap therapy there is always the chance that it will go away with time and you don't really need a different machine.
Plus there is the chance that the centrals can be reduced by a little pressure setting tweaking.
But the first thing to do is try to figure out if the centrals are maybe awake breathing irregularities (in which case we ignore them) or if they are the real deal and warrant concern.

Your ResMed machine flags CSR breathing but that in itself may not mean anything bad but if you are having a lot of centrals associated with the CSR flagged breathing then we want to pay close attention to that CSR flagged time.

So we need to dig deeper before we start going down the "I may have the wrong machine" road.

[knothead]

If you paid $5000 for that machine, you really got screwed.

LSAT, I think he meant his deductible was to high and not met so he paid out of pocket...just my thoughts.

[Pugsy]

I notice the attached report from Sleepyhead is almost unreadable. How can I fix that?

Not a problem. While the large thumbnail is too small to read we can easily click on the link and go to imgur and then enlarge the picture so it is easily read.
Now if you hadn't done the thumbnail so that we could click on it and thus not able to enlarge the image then that would have been a problem.

[dooger54]

If you paid $5000 for that machine, you really got screwed.

I paid $868 through CPAP.com. I have a $5000 deductible on my insurance, so it was all out of my pocket. If I would have bought it through the local DME I would have paid $3000.

[dooger54]

Dooger, it would be more helpful if you would post the detailed graphs: Events, Flow Rate, Pressure, Leaks, and perhaps Flow Limitations. Follow this tutorial on how to post your charts: https://sleep.tnet.com/reference/tips/imgur

You may want to change the title for Cheyne Stokes Respirations (CSR) to Periodic Breathing (PB). This can be done under File/Preferences/Events tab in Sleepyhead.

From the summary data, your overall AHI average is not that bad, and the presence of CA may be an expected consequence of your restless sleep and excessive PLM. It is fairly normal to record CA when you are tossing, turning and moving in bed, and is not necessarily a health issue, but normal sleep/wake junk (SWJ). You can search on the forum and find many posts related to that topic.

Are you being treated in any way for restless leg or PLM? Are there any drugs or other health issues that might be affecting sleep or respiration?

No other health issues. No drugs except for cholesterol and allergies. Both are under control. I am not being treated for restless leg but that issue is still up in the air. The sleep study doctor noted to my personal physician the following -

"Would treat periodic limb movements if clinically indicated"

I will post latest days graph info from Sleepyhead later today.

So not sure if I need to pursue that issue.

[dooger54]

And I'm curious why you haven't tried Apap mode with two settings - it gives a better idea of how things are going and your machine apparently has auto mode available.

Please see a previous thread of mine and you will see why I did this.

viewtopic.php?f=1&t=109640&p=1046917#p1046917

[dooger54]

Here is my Sleepyhead data from last night. I was using the Swift FX nasal pillows. I am also going to include a night when I used the Airfit F10 mask. Lot of leaks.

I did not spend a lot of time awake last night, it was actually a better night than most. That being said, a good night for me is maybe 5 or so awakenings when I turn over. But I normally go back to sleep pretty much right away. There are other nights when I lay awake for 15-30 minutes and have a hard time getting back to sleep.

Thanks for all the help so far! I was really getting discouraged.

[Pugsy]

The night with the full face mask...leaks are so bad that the report is pretty much useless except to confirm that leaks were an issue.

The last night with the nasal pillows....were you awake at any time prior to turning the machine off at approx at what appears to be around 6 AM? That 15 minute time frame from 5:45 to turning the machine off is what I would like to see in more detail IF you are sure you were asleep.

Go to the events tab and click on the category "Clear Airway" and open it. Then scroll down the list of CAs until you come to the time frame from 5:45 on....pick a clear airway in the middle with events on either side...click on that event. The graphs on the right will change to show that CA event (and a few of the others on either side) and then get me another screen shot of that zoomed in event/graphs.

Adjust your graphs so that the snores and flow limitations are turned off thus making the leak, events, pressure and flow rate graphs larger. You don't need those graphs at this time.

For leaks...take your mouse cursor and put it on the vertical line right above the 0.0 mark for leaks...double click the mouse on that line and the leak graph will change from a fixed scale to a floating scale using only the maximum leak as the top of the scale. This will enable better large leak evaluation because when the fixed scale at 120 is used things are just too tiny.

[dooger54]

Pugsy-

Hopefully below is what you need. Let me know.

I can't be sure I was asleep that last 15 minutes. There is a good chance I was not. Seems like I should know, but it all blurs together!