Failure to See Results Despite CPAP Compliance

[dan.howard.c]

Thanks for all the responses guys.

It must be clear to all of us that it won't be one thing, but several ganging up on you at once.

I do believe this to be the case. Even the two problems I identified above seem like enough to cause problems and make it hard to understand, let alone other factors. I eat healthy, I'm active, I'm a healthy weight, and I sleep by myself.

Is there something in particular that I should be looking for for the apnea duration you're talking about? And yes, I did 100% mistakenly say that I got under two for a long period of time. I think I tricked myself into thinking it was generally lower than it actually was. My doctor also told me the goal was to get to an AHI of 4, which is clearly not true based on what you guys are saying

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".

Yes, I realized when I got home that it was quite a bit higher than I thought. Especially the days where I was on CPAP for an extended period of time. Obviously something is wrong with the way my CPAP is treating me. Especially when you look at this day that I posted earlier: https://i.imgur.com/S2vkEFx.png

How would I go about solving the AHI? My sleep lab "titrated" me to 7 cmH2O, but they only went 5, 6, 7 and then stopped. Is my pressure too low or something?

I will try turning off EPR for the time being.

sleep/wake/junk or a post arousal central and if that's the case they can be set aside and not worried about.

This is part of the reason it's so hard to wrap my head around this all. It's hard to say whether or not the CPAP is working when there is so much variation in my compliance, my arousals, my AHI, etc. I really wish my doctor was more helpful and had more office hours, there are a lot of things I need to ask him. I'm seeing him in May (and also a new sleep doctor for a second opinion). I intend on barraging them with questions

[palerider]

Yes, I realized when I got home that it was quite a bit higher than I thought. Especially the days where I was on CPAP for an extended period of time. Obviously something is wrong with the way my CPAP is treating me. Especially when you look at this day that I posted earlier:

How would I go about solving the AHI? My sleep lab "titrated" me to 7 cmH2O, but they only went 5, 6, 7 and then stopped. Is my pressure too low or something?

I will try turning off EPR for the time being.

Raise pressure.... and turning off EPR effectively raises the pressure.

If turning off the EPR doesn't alleviate enough of the obstructives and hypopneas, then bump the pressure up a cm... see how things go for a few days, and repeat if needed.

[Mogy]

Hi Cory,
Of course these are only my opinions, but I try to answer some of your questions.
"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?"

1. I don't think that Obstructive Sleep Apnea is the major factor in your fatigue problems/or your sleep problems. Your OSA is mild, there are many people with much more serious OSA that manage to function okay.
My AHI is in the teens and I function okay without using my machine, although I fuction better with it.
I believe your fatigue and sleep problems are more closely related to Crohn's, spontaneous arousals, and drug interactions.
2. I am not sure about this one, but the sleep fragmentation may be exacerbated by CPAP. Until you get used to the mask and all that is included in PAP therapy, it may be contributing to the problem. Without my machine I stay unconscious throughout the night, when I use it I fully wake up several times.
One thing you could try is 'white noise'. Studies have shown that people who use it will have less fragmentation.

3.REM sleep is important. PAP therapy may not be helping. According to this study, it helps people with severe OSA regain deep sleep, but not REM sleep.
https://www.ncbi.nlm.nih.gov/m/pubmed/11704596/

4. The more you use it, the less likely you are to take it off. If you are persistent, it will become second nature to have it on for longer periods.

HTH.

[Julie]

For what it's worth, that article was written in 2001, and science has come a long way since then. Your 3 answers are all discouraging to using Cpap for a newbie (or even an oldie), yet in #4 you suddenly give advice re using it... I'd be confused myself.

How do you know that OSA is not the major factor in his problems - have you examined and tested him? And whether or not you 'function' ok without cpap has no bearing on whether or not he will or should. I realize what you said is your opinion but it's not a great idea to put out some of that without any 'back-up' to back it up except for one out of date article.

[ChicagoGranny]

According to this study, it helps people with severe OSA regain deep sleep, but not REM sleep.
https://www.ncbi.nlm.nih.gov/m/pubmed/11704596/

There are some serious issues with that study:

In this study we allowed 1 mo for patients to acclimatize to CPAP, and all patients had at least 25 h of use before assessment.

We know that 25 hours of CPAP use is rarely enough to allow a newbie to acclimatize to the process. And, there is no indication of any attempt to optimize the CPAP settings - the lab titration was used to set a straight CPAP pressure. We've seen many times that the lab titration is not optimal for straight CPAP settings.

Furthermore, the study did not report the treated AHI. Was it 1.0, 3.0, 5.0 or 10.0? We don't know. The study did report:

Table 2: Mean arousal index with CPAP = 21

That smells heavily of a CPAP process that has not been optimized. I wonder why they did not report the AHI for the CPAP group? Maybe it would have shown how poor the study was?

[ChicagoGranny]

that article was written in 2001, and science has come a long way since then.

This is not a valid criticism of the study. Instead, you would have to show that later studies contradict the study from 2001.

[Mogy]

My main point is that Mild OSA is not the same as Severe OSA.
His symptoms are severe, if he had Severe OSA you could make a case for the OSA being a major component of his issues.
Fatigue is closely related to Crohn's and is a side effect of the drug he is using. It is not closely related to Mild OSA.
Another study from 2014 concludes:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4163952/

Conclusion.
Individuals with mild OSA in this cohort do not have worse sleepiness, mood or quality of life in comparison to those without OSA.

[dan.howard.c]

Fatigue is closely related to Crohn's and is a side effect of the drug he is using. It is not closely related to Mild OSA.

The worrying part is that the last time I saw my specialist he told me my disease was in remission. You would think hearing that would be a relief, but considering how bad I've been feeling it was actually a bombshell.

I am quite worried that the biologic (EntyVio / Remicade) is what's causing this. It was around the same time that I started the treatment... But side effects of the drug do not really include fatigue. It does increase your chances of getting lukemia, but I feel like other symptoms would have been present. I don't know, it's so hard to judge this stuff when there's so many things going on.

Individuals with mild OSA in this cohort do not have worse sleepiness, mood or quality of life in comparison to those without OSA.

I am actually a little cautious that this sleep apnea is just a wild goose chase. If I do spend all my time trying to get CPAP to work and fail to identify that this is actually a completely different problem, then I'm basically screwed. I already feel like I've lost two years of my life to this debilitating fatigue. I have tried to talk to my general practitioner and my enterologist, but they've both basically told me off saying "there's nothing wrong".

This doesn't mean that I'm not going to keep at CPAP, more just that I really need to be critical of how I'm addressing this issue.

[Julie]

All I read in your last note was that you're pessimistic... but regardless of what happened in the past, or how unsure you are of the present, wouldn't it help to at least pretend your way to optimism re OSA/Cpap for now - what if it helps? Works? Makes you feel better? What do you have to lose - don't dredge up all kinds of things please, that was rhetorical. Give it a worthwhile try and be ready to be surprised... same price as discouraging yourself, but with maybe something good on the other side.

[dan.howard.c]

pessimistic

There is definitely pessimism, this has been a long ride. I am going to try my best with CPAP.

Best case scenario: get CPAP to work, it fixes this problem
Moderate case scenario: get CPAP to work, deduce that OSA is not the problem
Worst case scenario: still have problems getting CPAP to work