Have been on CPAP for OSA for two months and am trying to figure out why I’m still so tired, and my AHI isn’t down as far as I want yet.

There are several types of leak data on the printout and I don’t know what each means.
On the graph, all my leak rates (average leak, 90% leak, average max leak) seem to have remained about the same since I started use, which makes me think that I’m still having significant leaks, because I’m pretty sure I had frequent nose leaks while I was using smaller nasal pillows.  (I switched masks Sep 1 bc I wasn’t sleeping with Swift LT for Her; then switched nasal pillow sizes Sep 15 because I was getting nose leaks.)

My “average leak” since I started is listed as 35 lpm.
My Fisher and Paykel Opus 360 mask says it has controlled leak rate of 28 lpm
When at my pressure of 8 cm.  

I don’t know if my Remstar Pro takes into account the type of mask I’m using, but I would guess that my tech would have told me if he had programmed that into the machine.

So I think that means my real leak is 7 lpm?
I don’t know whether that’s enough to cause problems? but even just the past couple weeks, my

Obstructive apnea index is 2 or 3 each night,
And hypoapnea index is 3-6 each night,
with an average AHI of 8 recently. (down from 22 in the polysomnogram)

I’ve been trying to train my tongue to seal off my airway in case I open my mouth—so I’m trying to figure out if this data means I’m still having mouth leaks which may be the reason for the AHI, or if it’s something else like the pressure isn’t high enough.  I started trying to keep my tongue in the back of my mouth about a month ago—should I keep trying, maybe it’s just not working yet? Is there a trick to it?

The certified sleep doctor I saw yesterday was dismissive of the fact that I’m still almost as tired as I ever was.  He said 35 lpm is an “acceptable leak rate” but didn’t look up my particular mask; he said he didn’t believe that I was actually having the hypoapneas that the machine said I was, simply because “it’s a CPAP machine, it’s not as good as a polysomnogram.”  So he just concluded that “compliance is the most important thing, and yours is 100%, so your fatigue is clearly not a result of sleep apnea.” (I’m on disability for chronic fatigue syndrome- at 31 years old.)

The doctor who read my polysomongram and titration study told me when I started that if I wasn’t feeling better after 1-2 mos, there was a more sophisticated test to do- but I can’t remember the name of it, and the doctor I just saw said “that doesn’t make any sense- there is no more sophisticated test than a polysomnogram.” I will pursue the test, but if it’s a leak problem I’d like to take care of it now and not wait weeks for a test… but not sure if mouth taping/mouth guards are safe- or why a chin strap would be safer?


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Remstar Pro with C-Flex; Fisher and Paykel Opus 360; 8cm pressure for OSA

Most likely the "more sophisticated test" really isn't all that "more sophisticated" but does provide more information because it is properly done w/an in-lab sleep evaluation or in your case an in-lab CPAP titration the night before followed by a Multiple Sleep Latency Test the very next morning and day. This involves not quite as many leads and wires and a 20 minute nap period every 2 hours, typically 8 AM, 10 AM, Noon, 2 PM and 4 PM the results of which "could" indicate narcolepsy.

As long as your AHI is NOT consistently under 5.0 this sleep doctor nor any other can truthfully and honestly say that you do NOT need CPAP or a pressure or other setting adjustment.

These CPAPs can compensate fairly well for excessive Leaks above the allowed vent rate for your mask. 7 L/M is not all that excessive. A consistent Leak rate of 0.0 is almost impossible to attain.

An AI of 2 or 3 is fine for most people. But combined w/the HI might possibly be the cause of your continued tiredness. I say MIGHT POSSIBLY. There is also the "sleep debt" you've accumulated that needs to be worked off and some consideration can be given to your CFS Dx as well. But until your AHI is consistenly under 5.0 it is wrong to place the blame on any CFS Dx.

You are making progress from before starting CPAP - but - obviously it still isn't quite enough progress. Give it another month and then it may well be time to start digging deeper, obtaining copies of your full scored data summary reports w/condensed graphs and doctor's dictated results from your in-lab sleep evaluations and in-lab CPAP titrations and seeing another sleep doctor.

This is assuming that due to your CFS Dx you have been thoroughly tested and checked out physically and nutritionally to rule out other than a sleep problem and CFS. CFS is still a Dx of exclusion, isn't it? Its not something that I've kept up on the last 10 years or so.


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity mask, ResScan 3.7, S8 ResLink, Embla oximeter.

thanks CronhieToo for the reply.  you hear some doctors say that the full benefit from cpap is within two weeks, and then it's not hard to feel impatient!

yes, cfs is still pretty much a diagnosis of exclusion.  the ny times had an interesting article on a retrovirus that may be a causative factor- they're testing some anti-HIV drugs on animals this fall as a possible treatment for it, i think.


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Remstar Pro with C-Flex; Fisher and Paykel Opus 360; 8cm pressure for OSA

Did you ever read "Osler's Web"? Fascinating book. Interesting theory on the cause of CFS. Non-fiction but reads easy like fiction.


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Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity mask, ResScan 3.7, S8 ResLink, Embla oximeter.