3 Months on CPAP, still tired despite Dr saying my apnea is controlled

[Sleeprider]

In nearly every titration protocol, EPAP is used to hold the airway patent against obstruction, and to provide improved oxygenation by maintaining higher "positive end expiratory pressure" (PEEP). Pressure support increases ventilation, improving tidal volume, inspiration time and flow limitations, and lower plasma CO2 or PCO2 (partial pressure of CO2 https://www.ncbi.nlm.nih.gov/books/NBK482456/

The adverse side-effect of excessive pressure support can be onset of central apnea by inducing hypocapnia, and it can be disruptive to sleep if the pressure support is too stimulating. There is a limit to the amount of pressure support most individuals can tolerate and still maintain fully spontaneous respiration. Your Aircurve 10 S (S stands for "spontaneous") will not initiate a breath, so excessive pressure support would usually show up as respiratory instability and/or central apnea.

[highwaystar86]

Thanks.. and I must say that once I'm backing working regularly again I will be donating to this forum for all of the help and care I've been getting from you folks here.

This screenshot is from me laying while awake with a PS of 6 and to me it looks like that flow rate is great and what I'm aiming for. I also feel like it's a more natural breath for me as well, less of an anxious feeling. 

So, would it merely just a be a matter of me getting used to this setting while actually sleeping? 

   

[Sleeprider]

Your tidal volume is high and respiration rate below want we expect to see in a sleeper, but I expect things will settle out when you sleep. If this feels good and does not result in therapy onset centrals, it's fine. Minimize the calendar for your next screenshot so we can see more of the relevant data.

Donations to Apnea Board go 100% to the operation of the site to pay for our servers, software upgrades and to keep us available. No staff takes payment other than your thanks and the reward of seeing people get better and succeed with their therapy. Thanks for your thought on that.

[Geer1]

Seems to be a lot of correlation to low blood pressure, anxiety, POTS, cold bands and feet which I have all of the above. 

Correlation does not equal causation, just something to keep in mind. 

I believe there are two kinds of UARS. 

Type one are patients with obviously restricted airways that causes increased effort, CO2 buildup and RERAs. These patients respond to PAP or other treatments that improve breathing capability and symptoms resolve once breathing improves because breathing restriction is the underlying issue.

Type two are patients with what I think of as "UARS". These are patients that may have minor breathing issues but have other underlying issues that makes their nervous system over active. In these cases PAP and other treatments to fix the breathing are usually not successful in resolving all symptoms because it isn't the breathing that is causing all of the symptoms and the breathing may even be a symptom itself. 

The difficult part is trying to differentiate which type a patient is. When a patient has started PAP and especially bilevel without any noticeable improvement I start thinking it is the later. Even partial treatment should result in an improvement of symptoms if breathing is in fact the cause of symptoms. The other thing that I think helps differentiate the type of patient is being able to notice obvious flow limitations and reras in OSCAR data (which would support type 1). Examples like this.

   

I bring this up because a lot of patients get stuck thinking that UARS/breathing is their issue just because there are reports/studies correlating UARS with a multitude of other symptoms (similar to how anxiety correlates with most health conditions). Some of these patients spend years trying to fix their breathing and I call it going down the PAP rabbit hole. 

Your data did show some flow limitations and the bilevel will help you treat them but imo you need to keep in mind that having flow limitations is as non specific as the lesions found in your mri. Lots of people have flow limitations (and apnea) without issue. Imo do what you can to improve/treat your breathing and if symptom improvement stagnates use that as a sign that you have treated your breathing issue sufficiently and remaining symptoms are from other causes. 

As for your treatment one unfortunate thing is that you still have never had an automatic machine and I personally don't believe you have investigated pressure enough. EPAP holds your airway open and PS creates a pressure differential trying to force more air through airway. Keeping an airway open is far more effective than forcing air through it. Think of a kinked air or water hose, you can hold back 100+ PSI of pressure by kinking a hose. Unkinking the hose improves the flow much more effectively than increasing the pressure differential. Imo EPAP is more important than PS and you should confirm raising EPAP doesn't help before trying to fine tune PS. Right now your EPAP at 5 cm is only slightly above the machine minimum and rather than continuing to increase PS I think you should be focus on a PS of 4 or 4.5 and try raising EPAP to see if it has an effect. 

Please do not base decisions on settings on how you feel or what your data looks like when you are awake. Awake breathing is not representative of sleep breathing and at most just gives you an idea of how settings affect the machine operation. Setting changes need to be based upon data from previous nights and how previous changes affected said data. 

As Sleeprider mentioned your tidal volume in that example is very high using PS of 6 (980 versus 520 during sleep on Feb 6th when you used PS of 5 and had central apnea affects indicating ventilation was high). Your RR was low because your body was finding it extremely easy to breath and it didn't feel need to breath more regularly. It is likely you will be over ventilated when you sleep with these settings but feel free to to try them as a learning exercise if desired.

One thing to keep in mind is that the occurrence of central apnea is telling you that your body doesn't think it needs as much air as you are giving it and it works in the opposite way UARS does (high CO2 from UARS causes arousal, low CO2 from over ventilation causes central apnea). If you are seeing central apnea then UARS should in theory not be an issue and causing symptoms.

[highwaystar86]

Yes, I am a big fan of correlation does not equal causation! And as you know I am seeing specialists for other causes of the fatigue. But one thing that I do know for sure is that when I  have a night that I take the mask off and not put it back on MAN I FEEL IT. The next day my symptoms are amplified greatly. That could just be from the apnea itself of course though. 

But I do know from my pulmonary functions test last May that I have borderline gas trapping, and that’s while awake. My breathing while awake has changed quite a bit since my surgeries in 2020. 

So with the type 2 are you meaning that something like generalized anxiety disorder could be the cause in that case?

[highwaystar86]

Imo EPAP is more important than PS and you should confirm raising EPAP doesn't help before trying to fine tune PS. Right now your EPAP at 5 cm is only slightly above the machine minimum and rather than continuing to increase PS I think you should be focus on a PS of 4 or 4.5 and try raising EPAP to see if it has an effect. 

When I was using the CPAP I had a higher EPAP setting though and it wasn’t fixing the flow limitations so I’m a little confused by this.

[Geer1]

Type 2 is likely far more complicated than being caused by GAD. Imo it is more likely that GAD and UARS could be caused by the same underlying issue although I could see GAD exagerating UARS when anxiety is acting up.

The reality is that if our nervous system is excited it affects physical body functions, neurotransmitters and hormones. There are real physical and chemical changes and these changes are the same if what our body is perceiving as a threat is a tiger or day to day stress.

GAD is something I struggle with and I have spent years trying to figure out what is the underlying cause of my sleep and health issues are. So far all I know is that everything is correlated and in order to feel the best I can I have to treat all my symptoms/issues to the bedt of my ability. If one thing acts up it often affects others.

If I let anxiety run rampant sleep is worse. If I sleep worse for an unknown reason anxiety is worse. The worst was years ago before I learned how to improve/control both and I was stuck in a vicous cycle of of anxiety worsening sleep and the poor sleep causing more/worse anxiety. I have found improvement but still not solved issues, unfortunately my sleep studies now indicate spontaneous arousals as being a potential culprit and no one knows how to further diagnose or treat.

[highwaystar86]

Here is the data from my best night of sleep so far with the BiPAP. 
If I take out the first 42 min session where I hadn't fallen asleep yet the AHI drops to 1.55 and realistically in the 6 hours straight session it was below 1 so that is looking more positive. I think a lot of my throat clearing while awake gets picked up as CA's 

I'm curious if anything else sticks out other than the flow rate still not being a smooth curve yet.

   

[Dormeo]

Throat-clearing isn't likely to register as a CA, but we breathe much less regularly when we're awake than when we're asleep, so the CA flags probably just reflect that.

You are at the point where the BIG question is how you feel. There's no point in fretting about the inspiratory curves if you are sleeping well and feel rested during the day. So -- how are you feeling?

[highwaystar86]

Throat-clearing isn't likely to register as a CA, but we breathe much less regularly when we're awake than when we're asleep, so the CA flags probably just reflect that.

You are at the point where the BIG question is how you feel.  There's no point in fretting about the inspiratory curves if you are sleeping well and feel rested during the day.  So -- how are you feeling?

Ah okay. I've heard the term "sleep wake junk" before and I guess those flags fall under that category.

I've been having some better days but nowhere near where I should be in terms of how I feel yet. Wouldn't the curves represent some respiratory distress still though?