[CPAP] Please help me understand why therapy is not showing results

[Paradox97]

Dear all,
I am a 26 years old male who started CPAP therapy 1 year and 3 months ago.

At first, I tried a face mask that covered both my nose and mouth, however, during the night I would wake up due to air coming into my mouth.
Also, even when using an humidifier, I could not avoid waking up with sore throat and very bad dehydration.

After a couple of months, I switched to a nasal mask (N30) which seems to have slightly improved the situation. My pneumologist was saying that therapy was super effective on me, that my AHI score of 56 turned to 1.4 which is a great result and that I would see the benefits of using the mask sooner than later.

I did not ever feel that I woke up less tired, just more constant in "tiredness" (i.e., if I had swings of let's say, tiredness between 7 and 10, now it's always on 7), and I still wake up with headaches and dehydrated because it looks like I'm still trying to sleep with my mouth open.

I tried using chin straps, using mouth tape etc, but nothing helped in keeping my mouth close. I just found out about OSCAR and immediately dumped my data in there, and to my surprise did not find anything particularly wrong with it.

Lately I've also increased the min. pressure to 10 on my own, because I felt short of breath while trying to fall asleep.

Here you can find two screenshots, the first one is after I increased min. pressure to 10:
https://imgur.com/V54pJtp

Second one, with pneumologist-set min.pressure of 6:
https://imgur.com/ljb45X7

Another thing which might be worth noting, I have a deviated jaw which would require surgery (deviated to the left, not backwards or frontwards). I also never had a good night sleep even as a child, but I was told I'm just lazy.

I am at an unhealthy weight now, however, I was also at a perfectly healthy weight between 14 and 20 years old, but still had sleep related issues.


Please let me know if you need any more data, I will be happy to provide more in depth graphs and even share the whole data with you in private.

Best regards

[SleeplessInVirginia]

Just a thought to explore. There are many things that can cause symptoms of tiredness. Apnea is one. That is a condition that was diagnosed and could explain your symptoms, so the doctor stopped looking for other potential causes. But it may not be the only cause at play. If your sleep data now looks good but you still feel tired, there may be additional causes. A thorough physical, including blood tests, might identify another problem (thyroid, kidney, or heart performance, anemia, testosterone level, various chronic conditions or infections, etc. ... there's a long list of other potential causes). 

It could even respond to lifestyle or diet changes. For example, if you're overweight or sedentary, exercise and weight loss would likely help. A more healthy diet can give you more energy and alertness. 

If none of those things identify a potential cause, there are common problems with neurotransmitters (brain chemicals) that can manifest as tiredness.  Since the same neurotransmitters are involved in other conditions, like depression, doctors will often try medications used to treat depression to see if they help. 

See your general practitioner with the goal of identifying the cause of the tiredness given that the apnea is now under control.

[dean406]

SleeplessInVirginia provided advise I feel is very good.  i.e.- might not be /only/ apnea causing sleep issues.  All of us strive for a working solution and usually reach it with persistence.  The medical field certainly helps; but more often than not.... we need to become the investigator.  Sounds like your on that path!

Since you have a PAP and know how to use it.  I would assume it makes sense working to ensure your apnea is under control.  Moving to 10 was probably a good idea - but only review of the data will prove/disprove it.  

As to dryness, did you already tweak the CPAP humidifier temperature higher to see if it helped (I'm assuming you probably already did this)?

Personally, I became fond of the full-face mask.  It took time to get used to it; but now I prefer them.  Mask fitting, strap tightness; temperature setting of CPAP; CPAP make/model - all make a difference.  

What make/model unit do you have?

[PeaceLoveAndPizza]

You have possibly enough flow limitations and snores causing arousals (look at flow limit chart and the spikes in the flow rate chart), which are likely waking you up enough to disrupt your deeper stages of sleep. Tidal volume may be a bit low as well depending on your gender, height, weight, etc. More pressure should take care of the tidal volume.

My suggestion is to first get the flow limitations under control and see how it affects sleep quality. I would set your min to 10, max to 20, and EPR to 3. Once you have a few nights under your belt post the OSCAR data again to see its efficacy. As more data comes in you can start dialing in the pressures to an acceptable range.

Keeping track of how you feel the next day is the most important bit of data for those trying to help. You are currently treating the apnea’s, flow limitations are the next windmill to tilt at. 

Others more knowledgeable wil hopefully jump in and correct me if I’m going down a rabbit hole.

[wallybru]

The mouth tape really helped me.

[Paradox97]

Just a thought to explore. There are many things that can cause symptoms of tiredness. Apnea is one. That is a condition that was diagnosed and could explain your symptoms, so the doctor stopped looking for other potential causes. But it may not be the only cause at play. If your sleep data now looks good but you still feel tired, there may be additional causes. A thorough physical, including blood tests, might identify another problem (thyroid, kidney, or heart performance, anemia, testosterone level, various chronic conditions or infections, etc. ... there's a long list of other potential causes). 

It could even respond to lifestyle or diet changes. For example, if you're overweight or sedentary, exercise and weight loss would likely help. A more healthy diet can give you more energy and alertness. 

If none of those things identify a potential cause, there are common problems with neurotransmitters (brain chemicals) that can manifest as tiredness.  Since the same neurotransmitters are involved in other conditions, like depression, doctors will often try medications used to treat depression to see if they help. 

See your general practitioner with the goal of identifying the cause of the tiredness given that the apnea is now under control.

Thanks for your input and sharing your message, I think you have a good point and in fact took some steps into this direction already. I took some blood tests, had ultrasounds for kidney related issues, took urine samples etc and couldn't find anything.
The issue I have with GPs and doctors in general is that they are hard stuck on me being obese. Yes, I know it has incidence, but I have had these issues for my  whole life, even as a perfectly healthy weight teenager and young adult, but I'm always kind of treated bad due to this.
What doctors refuse to acknowledge is that it's pretty damn hard being tired all day, working full time, tracking your calories at every meal etc. I just don't have enough focus for all of that. So I have to fight even to get blood samples taken and not be dismissed for being "fat and lazy".

SleeplessInVirginia provided advise I feel is very good.  i.e.- might not be /only/ apnea causing sleep issues.  All of us strive for a working solution and usually reach it with persistence.  The medical field certainly helps; but more often than not.... we need to become the investigator.  Sounds like your on that path!

Since you have a PAP and know how to use it.  I would assume it makes sense working to ensure your apnea is under control.  Moving to 10 was probably a good idea - but only review of the data will prove/disprove it.  

As to dryness, did you already tweak the CPAP humidifier temperature higher to see if it helped (I'm assuming you probably already did this)?

Personally, I became fond of the full-face mask.  It took time to get used to it; but now I prefer them.  Mask fitting, strap tightness; temperature setting of CPAP; CPAP make/model - all make a difference.  

What make/model unit do you have?

I tried a few different temperatures, 26°C, 21°C, 16°C, with heated and non heated tube, and I also have a tube "wrapper" (can't remember how it's called) made out of a sweater like material which keeps it warmer, but nothing really helps.
Face masks are a no-go, even though they are comfortable to me, I tend to have my mouth open even when not breathing through it, that causes air to leak and mouth to become even more dry and sore. It also causes long term teeth decay issues which I would really like to avoid.

Model: ResMed AirSense 10 with AutoSet pressure

You have possibly enough flow limitations and snores causing arousals (look at flow limit chart and the spikes in the flow rate chart), which are likely waking you up enough to disrupt your deeper stages of sleep. Tidal volume may be a bit low as well depending on your gender, height, weight, etc. More pressure should take care of the tidal volume.

My suggestion is to first get the flow limitations under control and see how it affects sleep quality. I would set your min to 10, max to 20, and EPR to 3. Once you have a few nights under your belt post the OSCAR data again to see its efficacy. As more data comes in you can start dialing in the pressures to an acceptable range.

Keeping track of how you feel the next day is the most important bit of data for those trying to help. You are currently treating the apnea’s, flow limitations are the next windmill to tilt at. 

Others more knowledgeable wil hopefully jump in and correct me if I’m going down a rabbit hole.

Attached is a more detailed screenshot on the charts at 9:30 AM (second screenshot, 23 september), with the highest spike of flow limit (flow spike)
There is a more detailed screenshot on one of the first ones, same night, on one of the first spikes around 5 am attached as well (flow spike 2)


I am now setting min pressure to 10, max to 20, and EPR to 3. As an info, EPR was disabled.
I have tried it a couple of minutes and it makes such a huge difference in how easy it is for me to breathe while I'm awake, curious to see how tonight will go.

Thank you all for your help so far, if anybody has any other suggestion, please let me know!

[Sleeprider]

Paradox, add EPR Full Time at 3 to your settings. It's going to make a huge difference. Many members come here complaining of continuing fatigue in spite of good AHI. The use of EPR(exhale pressure relief) turns your machine into a bilevel. It gives you pressure support during inhale which can help overcome flow limits which are a source of respiratory effort related arousal. Trust me, it works.

[Gideon]

Agree with Sleeprider, set EPR=3,Fulltime.

I made some notes on your chart, The Arousals would need to be confirmed with a closer zoom (3-minute view), but I'd bet I'm right on a majority of them,

   

[Paradox97]

Paradox, add EPR Full Time at 3 to your settings. It's going to make a huge difference.  Many members come here complaining of continuing fatigue in spite of good AHI. The use of EPR(exhale pressure relief) turns your machine into a bilevel. It gives you pressure support during inhale which can help overcome flow limits which are a source of respiratory effort related arousal.  Trust me, it works.

Agree with Sleeprider, set EPR=3,Fulltime.

I made some notes on your chart, The Arousals would need to be confirmed with a closer zoom (3-minute view), but I'd bet I'm right on a majority of them,

I followed your reccommendation as well as PLAP's and set EPR to 3 full time.

About the arousals, you can find attached three examples if it may help identify them better with the 3 minute view.

[Sleeprider]

This last chart does not show EPR on Full-Time at 3. There is no EPR in use here.