Failure to See Results Despite CPAP Compliance

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
dan.howard.c
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Failure to See Results Despite CPAP Compliance

Post by dan.howard.c » Thu Mar 22, 2018 6:46 am

This post is going to be kind of long, sorry in advance. I just want to make sure I describe my situation in enough detail that someone can help. I’m in such a desperate situation: I have been doing really badly lately, it’s affecting my life substantially, and my sleep doctors are clowns who can’t seem to help at all (plus it takes months just to see them for a followup). I would really appreciate it if you could read over my rant and provide some advice :) . I did by the way look over other posts but not many of them were pertinent.

Here are the questions I’m looking to have answered. I’ll go into more detail about these at the end of the post:
  1. Do you think that sleep apnea is actually the most major factor in my sleep problems?
  2. Do you have any advice on how to reduce sleep fragmentation?
  3. Is there any way of inducing more REM sleep? Is it a problem that I have so little?
  4. Assuming that I do need to continue using the CPAP machine, how do I make sure that it stays on throughout the night if I have the tendency to wake up constantly and take it off?
Background

I’ve been having really bad sleep problems for 2 years. I quit my full-time job around then partly because I was feeling so tired and found it hard to work. One time, shortly after quitting, I was driving on the freeway around noon when I thought “hmm, I feel slightly more tired today than usual. I’m going to have a nap when I get home”. I remember nothing after that point, and woke up after crashing full speed into a car stopped in front of me.

Nowadays I am working part-time with very flexible hours, but I am finding it very difficult to complete tasks since I’m sleeping so much, can hardly focus because I’m so physically exhausted, and I have been completely unable to wake up early enough in the morning for anything earlier than 11. I am deeply worried that, at this rate, I will never be ready to start a full-time 9-5 job. Beyond that, my social life has become practically non-existent because I’m so tired at night that I find it very hard to do anything (and beyond that, staying out any later than 11pm deeply impacts my sleep schedule), and my sex drive has become effectively zero. I’m 24 and in the prime of my life, but I feel like I’m 80. Also as an aside, due to the incident, my license was suspended, and I can't get it back until I prove I'm "better".

Generally I need to sleep a long number of hours to feel even close to rested. Nowadays, my body wants to sleep around 11-12 hours, but even after that long of a sleep I feel like I’ve barely slept at all. It’s been months, maybe years since the last time I felt well rested. I have tried sleeping more, I have tried sleeping less, I have tried regimenting my sleep, but nothing seems to help.

I have had my CPAP machine for 5 months now. I have had compliance issues every once in a while, but there was a good chunk of time that I was very compliant. My AHI (untreated) is 8.50, and when using CPAP I regularly get an AHI of under 5. Even after a fairly long period of compliance, I felt no difference physically. I have been tested for other sleep disorders, but they found nothing out of the ordinary. One recent test shows that I have “Severely decreased mean sleep latency indicating severe daytime sleepiness” despite the fact that I was on CPAP for months, which is pretty obvious given how I feel.

Results from Various Sleep Studies

I have had two MSLT’s performed: the first was taken in October 2016 without a CPAP machine used, the second was taken in January 2018 with a CPAP machine. Here is a quick tabulation of the results:
Tabulation of MSLT Results - Imgur

Comments:
  • I have “severe” daytime sleepiness based on MSLT: 0-5 minutes is considered “severe daytime sleepiness”.
  • My REM cycle %SPT is less than half that normal (normally it should be 20-25%).
  • CPAP Machines do help to lower my AHI, but actually fails to reduce the overall arousals. When I was not on the CPAP machine (Oct 2016), I had 25.1/hr arousals, including 7.0/hr apnea arousals. When I on the CPAP machine (Jan 2018), I had effectively 0/hr apnea arousals, but my spontaneous arousals were high enough that they still had roughly the same total arousal rate. I think someone mentioned that the normal arousal rate should be around 5/hr, in which case my ~25/hr is much higher.
  • It sounds like a large number of intervening wakefulness, but I can’t seem to find any information on what it should be.
Basically, it appears as though I am not getting enough REM sleep and that my sleep is considerably fragmented. We’ll see more evidence of that in a second when I should my sleepyhead graphs. It’s worth pointing out that I have been taking sleeping pills to help fall asleep at night, yet in the January 2018 test my sleep was still fragmented despite the pill’s effect.

CPAP Results – SleepyHead

I have been using my CPAP machine for nearing 5 months, but I have found no difference in my quality of sleep. I still feel exhausted every day, and at no point throughout these months have I noticed any significant differences. See below graphs from SleepyHead.
Sleepyhead Graphs - Imgur

I had a fairly decent compliance, mostly so during November through January, less so during February, and significantly less in March. The AHI is also regularly below 5, which is good. The biggest issue is, as I made clear earlier, that I have a ton of sleep fragmentation. Most (if not all) of my sleeps have been fragmented with the CPAP machine. I will put it on at bed-time, wake up an hour or so later, take it off, wake up a couple hours later, put it back on, wake up again and take it off, ad nauseam (see the session time graph). I don’t do any of this consciously, it happens entirely in a state of semi-consciousness.

Questions

So basically, my questions are:
  1. Do you think that sleep apnea is actually the most major factor in my sleep problems? My non-supine sleep apnea AHI is 5.5, whereas my supine is 11. The 5.5 isn’t even bad (maybe I could get away with no CPAP machine and sleeping on my side). It almost appears that, although the sleep apnea obviously exists, a larger issue seems to be the fact that I have such fragmented sleep and so little REM. Specifically I am wondering whether or not my lack of success with the machine could be largely due to fragmentation and low REM time, given the fact that the CPAP seems to be controlling my AHI without result
  2. Do you guys have any advice on how to reduce sleep fragmentation? The current sleeping pill I’m taking is clearly not doing it. What other strategies could I try?
  3. Is there any way of inducing more REM sleep? Is it a problem that I have so little?
  4. Assuming that I do need to continue using the CPAP machine, how do I make sure that it stays on throughout the night if I have the tendency to wake up constantly and take it off? Also, is it possible that the mask being on my face is causing the increase in spontaneous arousals in the Jan 2018 test? I do feel like I wake up more often when I'm using CPAP (which is obviously a problem)
Thanks so much for all the help!
Cory

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Re: Failure to See Results Despite CPAP Compliance

Post by LSAT » Thu Mar 22, 2018 7:58 am

The charts you show are of no value....use this...


Use data to optimize your xPAP treatment:
how to see your data https://sleep.tnet.com/resources/sleepyhead
how to present your data https://sleep.tnet.com/resources/sleepyhead/shorganize
how to post your data https://sleep.tnet.com/reference/tips/imgur

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Re: Failure to See Results Despite CPAP Compliance

Post by ChicagoGranny » Thu Mar 22, 2018 8:28 am

dan.howard.c wrote:
Thu Mar 22, 2018 6:46 am
When I on the CPAP machine (Jan 2018), I had effectively 0/hr apnea arousals, but my spontaneous arousals were high enough that they still had roughly the same total arousal rate.
How do you know that your were having spontaneous arousals?

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Re: Failure to See Results Despite CPAP Compliance

Post by palerider » Thu Mar 22, 2018 11:35 am

dan.howard.c wrote:
Thu Mar 22, 2018 6:46 am
  1. Do you think that sleep apnea is actually the most major factor in my sleep problems? My non-supine sleep apnea AHI is 5.5, whereas my supine is 11. The 5.5 isn’t even bad (maybe I could get away with no CPAP machine and sleeping on my side). It almost appears that, although the sleep apnea obviously exists, a larger issue seems to be the fact that I have such fragmented sleep and so little REM. Specifically I am wondering whether or not my lack of success with the machine could be largely due to fragmentation and low REM time, given the fact that the CPAP seems to be controlling my AHI without result
  2. Do you guys have any advice on how to reduce sleep fragmentation? The current sleeping pill I’m taking is clearly not doing it. What other strategies could I try?
  3. Is there any way of inducing more REM sleep? Is it a problem that I have so little?
  4. Assuming that I do need to continue using the CPAP machine, how do I make sure that it stays on throughout the night if I have the tendency to wake up constantly and take it off? Also, is it possible that the mask being on my face is causing the increase in spontaneous arousals in the Jan 2018 test? I do feel like I wake up more often when I'm using CPAP (which is obviously a problem)
Thanks so much for all the help!
Cory
1. Your sleep is crap, your AHI is too high, 5.5 is a *crap* AHI. it's like being poked with a pointy stick every 11 minutes all night long.
If you think you can be rested after that... well, think again. I don't consider any AHI over 2 to be good, if mine's much over 1.5, I feel it the next day. (Mine's usually under 0.5).

2, 3, 4, You're USING the cpap, but your treatment isn't EFFECTIVE. It's exactly like wearing the wrong glasses, no matter how rigorous you are about wearing them, you still can't see clearly.

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Re: Failure to See Results Despite CPAP Compliance

Post by dan.howard.c » Thu Mar 22, 2018 11:44 am

ChicagoGranny wrote:
Thu Mar 22, 2018 8:28 am
How do you know that your were having spontaneous arousals?
The sleep reports themselves stated the number of arousals per hour, and break them down in to "spontaneous", "apnea", and "limb movement". If you look at the table I included in the first half, you can see the values from each test in the "arousals" row. The Jan 2018 test (on CPAP throughout the test) there was a combined arousal/hour of 24.9, with 23.7, 0.1, and 1.03 of S, A, and LM respectively. The older one, (not on CPAP) was a total of 25.1, with 15.3, 7.0, and 2.8 of S, A, and LM respectively. Why the spontaneous arousals are so high, especially in the newer test with CPAP, is beyond me.
LSAT wrote:
Thu Mar 22, 2018 7:58 am
The charts you show are of no value....use this...
The graph I linked can be magnified in IMGUR to a legible size by clicking on the picture. I'm not really sure specifically what you find of no value: the size of the graphs, or the data represented? I thought these were the best visualizations because they, especially the session time graph, shows clearly the issue I'm having.

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Re: Failure to See Results Despite CPAP Compliance

Post by Pugsy » Thu Mar 22, 2018 11:53 am

The overview graphs aren't particularly helpful in terms of seeing what goes on in detail throughout the night which is where most of us like to start with trying to figure out why someone has a problem.
About all we can tell is you have crappy sleep that is fragmented a lot....no idea why. We really need to see a typical night in detail.
See this thread
viewtopic/t158560/How-to-post-images-for-review.html
Then if we want something else we will ask.

Do you take any medications of any kind? If so, what is it and the dosage and time of dose? This includes whatever sleep aid you are taking and any OTC meds.

Any other physical and/or mental health issues going on that might even remotely affect sleep?

Spontaneous arousals....arousals from an unknown cause...extremely difficult to work on reducing because we don't know what is causing them.
But if you have enough of them even with a nice low AHI (which yours isn't) you will still feel like crap because your sleep is crap.
People without OSA who have a lot of spontaneous arousals will feel like crap.
The cpap machine...it can only fix problems related to sleep apnea. If something other than sleep disordered breathing is causing those arousals the best cpap therapy in the world isn't going to help.

But at this point your cpap therapy isn't optimal yet...if you optimize it will it make you feel/sleep better? Dunno...but worth trying.
What do you have to lose?

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Re: Failure to See Results Despite CPAP Compliance

Post by dan.howard.c » Thu Mar 22, 2018 12:46 pm

palerider wrote:
Thu Mar 22, 2018 11:35 am

1. Your sleep is crap, your AHI is too high, 5.5 is a *crap* AHI.

2, 3, 4, You're USING the cpap, but your treatment isn't EFFECTIVE. [/i]
Right, so to continue on your glasses metaphor, the issue here is that my doctor has given me a prescription, I have tried my best to adhere to the prescription, and it's not working. Whether or not it's because my doctor gave me the wrong prescription (namely, whether or not my pressure is set right), or I have a more serious sleeping problem, or if I'm just doing something completely wrong is what I'm trying to figure out.

My AHI when I'm on my CPAP machine is normally fairly low. I've had periods of time where my AHI is less than 2 every night. But nontheless, I feel awful because I am (presumably) constantly waking up in the middle of the night, and taking my mask off as well subconsciously.

Pugsy wrote:
Thu Mar 22, 2018 11:53 am
The overview graphs aren't particularly helpful in terms of seeing what goes on in detail throughout the night which is where most of us like to start with trying to figure out why someone has a problem.

Do you take any medications of any kind? If so, what is it and the dosage and time of dose? This includes whatever sleep aid you are taking and any OTC meds.

Any other physical and/or mental health issues going on that might even remotely affect sleep?

People without OSA who have a lot of spontaneous arousals will feel like crap.
The cpap machine...it can only fix problems related to sleep apnea. If something other than sleep disordered breathing is causing those arousals the best cpap therapy in the world isn't going to help.

But at this point your cpap therapy isn't optimal yet...if you optimize it will it make you feel/sleep better? Dunno...but worth trying.
What do you have to lose?
I'll post some sample day graphs when I get home, I'll try to include a few "good" days and a few "bad" days.
  • I have Crohn's disease, which certainly doesn't help me feel alert. For that I'm taking Entyvio, a medication similar to Remicade. I have tried to see if the medication or disease has much effect with sleep apnea, but there's not much useful information I could find (which generally means there's probably not a well-established link)
  • I have anxiety issues. I'm currently taking 45mg of Auro-Mirtazapine. These pills make you drowsy, and my doctors have actually mentioned that it should "help" with the sleep
  • I have (undiagnosed) insomnia. I sometimes find it very hard to fall asleep at night. I am taking Zopiclone most nights for that. When I don't take it I often fail to fall asleep entirely. Last night for example, I didn't take it, and I slept maybe a grand total of 3 hours
  • Since I have had such bad daytime alertness, my sleep doctor actually prescribed me Modafinil. I don't take it every day, and I only started taking it recently. It helps with focusing on work, but it sometimes makes it hard to sleep at night and I'm also quite worried that using a drug like Modafinil is treating the symptom of sleep deprivation and not the cause. As I mentioned, I don't have much faith in this sleep doctor
The worst part of this all is that my sleep doctor has never actually talked to me about arousals and the possibility of non-OSA, which is surprising given how bad my arousals are and how noticeable they are on my sleep report...

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Re: Failure to See Results Despite CPAP Compliance

Post by USMCVet » Thu Mar 22, 2018 1:03 pm

Not having your pressures set right will cause more arousals which gives you fragmented sleep. Also you need to be 100% complaint 100% of the time if you really want to have a shot at getting better.

Once you get up the right info like others have said you will get better specific advice.

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Re: Failure to See Results Despite CPAP Compliance

Post by Julie » Thu Mar 22, 2018 1:37 pm

I have not Googled your meds but can only imagine they're having some effect on your sleep problems... you take one for insomnia, another for anxiety, both of which have to be affecting your sleeping habits, and until you get that sorted out, whether by stopping them both for some time (under MD's orders and tapering if necessary) apart from anything else, you won't have 'normal' sleep to work with when trying to address... ? obstructive apnea, some other version of apnea or a bunch of potential sleep and/or neurology related, disorders you may never have heard of. You must try to sort out things, one at a time, before you have a stable place to work from.

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Re: Failure to See Results Despite CPAP Compliance

Post by dan.howard.c » Thu Mar 22, 2018 1:39 pm

Okay so I've attached some screenshots of a few daily graphs. See below. I'm going to refer to them in order 1, 2, 3, 4.

Images 1 and 2 are of days where I had long continuous sleep with the CPAP machine but my AHI was very high.
Images 3 and 4 are of days where I had very interrupted sleep with the CPAP machine but my AHI was low.

Interestingly, when I tried to find days that were long and continuous, my AHI was very high. When I tried to find days that were interrupted, it was generally low. When I tried finding days where I was non-compliant (very short days), my AHI was also fairly low.

So there are 2 problems that are sticking out:
a) My CPAP machine is clearly not doing its job even when it's on; and
b) As mentioned earlier, my sleep is very interrupted and I keep waking up and taking my mask off most nights. Even if my CPAP machine was doing its job, it still wouldn't solve the problem considering this issue.

Thoughts?

I don't think it's to do with leak rate. There are a few places where leaks do exceed the acceptable level, but even on the days where the leak rate was completely normal it seems like the issue persists. There are a few points that appear as if the leak rate might have caused me to wake up and take the mask off, like in image #3. I am currently using a face mask but want to switch to nose pillows cause it has been more leaky as of late.

1)
Image
2)
Image
3)
Image
4)
Image
Last edited by dan.howard.c on Thu Mar 22, 2018 1:47 pm, edited 1 time in total.

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Re: Failure to See Results Despite CPAP Compliance

Post by dan.howard.c » Thu Mar 22, 2018 1:44 pm

Julie wrote:
Thu Mar 22, 2018 1:37 pm
I have not Googled your meds but can only imagine they're having some effect on your sleep problems...
That would be great in theory, but realistically I don't have that option. I cannot come off the insomnia medication, as non-compliance results in me failing to fall asleep (which is obviously not going to help my sleep problems). I mentioned that yesterday I didn't take the medication and I didn't sleep all night.

The anxiety medication I've come on and off it enough over the years to make me not too worried about what it's doing to my sleep. I haven't really noticed much difference between being on or off it in terms of sleep, just anxiety.

The modafinil is definitely the most problematic, especially considering I have noticed that it sometimes causes more insomnia. I've been trying to not use it. But nontheless, I only started taking it recently, so the problems that I'm talking about were persistent even before I tried taking this med for the first time.

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Re: Failure to See Results Despite CPAP Compliance

Post by mesenteria » Thu Mar 22, 2018 1:59 pm

As you can see, Dan, you have a lot of well-intentioned and highly informed people here willing to help you. It must be clear to all of us that it won't be one thing, but several ganging up on you at once. We can help with PAP therapy, but it may not be enough. How is your cardio fitness? How is your weight? What is your routine or diurnal schedule like? Are you in a relationship, and is it stable? Do you share a bed with anyone? Pets? In the same room? Money problems? House falling down around you? I don't expect you to provide such private information, but obviously these matters impinge upon your overall mental, emotional, and physical states. The apnea and insomnia might be only mildly remediable without some way of dealing with other matters over which you may/may not have any practicable control.

You said earlier:
"
...My AHI when I'm on my CPAP machine is normally fairly low. I've had periods of time where my AHI is less than 2 every night..."

I'm sure you haven't fooled yourself into taking this to be 2 times per measurement interval...as in, per night. It's that many times, ON AVERAGE, for each hour of assessment. Given that each of us responds differently to stressors and changes of all kinds, it might be that your settings are simply wrong, or even that the type of therapy your machine can deliver is simply wrong....for you. I would not be happy knowing that my AHI is above "01" on a regular basis, but maybe 2 is as good as you're likely to get regardless of what we do to help and what you agree to trial for a period. And it may still be too much for you; twice an hour on average you are entering hypopnea or a type of apnea, and I haven't looked at the length of time each episode is on average. A whole minute, or only 12 seconds. If the latter, I think we'll have to look elsewhere to find your sleep problems.

Edit (added)- You show central apneas in numbers, and all of the ones indicated in the last diagramme are of that type. You may need an ASV, but I'll let the experts coach you from this point on and I'll keep reading to learn more. I do wish you full and grateful success.

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Re: Failure to See Results Despite CPAP Compliance

Post by palerider » Thu Mar 22, 2018 2:33 pm

dan.howard.c wrote:
Thu Mar 22, 2018 12:46 pm
palerider wrote:
Thu Mar 22, 2018 11:35 am

1. Your sleep is crap, your AHI is too high, 5.5 is a *crap* AHI.

2, 3, 4, You're USING the cpap, but your treatment isn't EFFECTIVE. [/i]
Right, so to continue on your glasses metaphor, the issue here is that my doctor has given me a prescription, I have tried my best to adhere to the prescription, and it's not working. Whether or not it's because my doctor gave me the wrong prescription (namely, whether or not my pressure is set right), or I have a more serious sleeping problem, or if I'm just doing something completely wrong is what I'm trying to figure out.
Unfortunately, it's a lot harder to immediately tell that a cpap prescription is bad, whereas it's pretty much immediately obvious that a glasses prescription is bad.
dan.howard.c wrote:
Thu Mar 22, 2018 12:46 pm
My AHI when I'm on my CPAP machine is normally fairly low. I've had periods of time where my AHI is less than 2 every night. But nontheless, I feel awful because I am (presumably) constantly waking up in the middle of the night, and taking my mask off as well subconsciously.
The overview you posted doesn't indicate regularly low enough AHI. I've seen many reports from people of feeling like crap when they've got an AHI around 4-5, even though that's medically "good enough".

The first thing we can try to do is help you to get to a truly "good enough" ahi... and then, once your treatment is optimized, see if you're feeling better, or there's other things beyond the apnea that need to be addressed elsewhere.

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Re: Failure to See Results Despite CPAP Compliance

Post by Pugsy » Thu Mar 22, 2018 2:33 pm

Short on time at the moment but will compose my thoughts in more depth later.
Just wanted to say....don't start worrying about the centrals and a different machine being needed at this time.
With the fragmented sleep it's very possible that those flagged centrals/CAs are sleep/wake/junk or a post arousal central and if that's the case they can be set aside and not worried about.
More later....I got some chores to do first.

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Re: Failure to See Results Despite CPAP Compliance

Post by palerider » Thu Mar 22, 2018 2:36 pm

First thing I'd try is turning off EPR.

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