4 years of CPAP usage with AHI <1 and not improving

[Wellhellothere]

Hi guys!

Having the feeling that I've tried my fair share of treatments and I figured I'd register here and ask for some much needed help

I'm a 40 year old male 192cm at 84kg (healthy BMI) and unfortunately haven't noticed much improvement from using my CPAP machine since 2017. Despite a very low AHI I still experience these symptoms:

• Faintness standing up
  Pain in legs/shoulder
  Tremor
  Loss of power
  Cold fingers
  Fatigue
  Startled from loud noises
  Tension/no deep breathing
  Stuffy nose during day, difficulty breathing
  Dry mouth
  Nausea/headache

The sleepstudy I had at the beginning of the year did not show any reason for me feeling winded and spent, as I was told by the doc. Recently had surgery by the ENT doc to have my concha reduced, with no significant improvement of symptoms. The most recent bloodwork I had done does seem to show a slight deviation in my blood pH levels with 7,45.
I seriously have the impression that these symptoms are related to the way I breathe and am hoping you could provide some feedback on the attached data.

Do you see anything that explains these above-mentioned symptoms? Should I have the pressure of my machine increased, so I can make use of the EPR function?

Many thanks for your time
Cheers!

[Pugsy]

Do you take any medications of any kind (even OTC)? If so, what?

How is your sleep quality? Do you wake often during the night and if so, any idea why?

I see you are on fixed cpap pressure....have you ever tried auto adjusting mode?

I see you are in Holland and they do thing a bit differently where you live....are you okay changing things yourself?
I have heard from patients in Holland that their health care providers really get their panties in a wad when patients change anything on their cpap machines.

I see nothing on this detailed report that might account for any of your listed symptoms above. It is obviously a very clean and boring report.

If you want to change the pressure just to see if maybe you sleep better and feel better with something that allows you to make use of more EPR....it won't hurt anything to try it.

[PJ1S]

I am far from knowledgeable in any of this - just sharing a data point. My saga and symptoms sound similar to yours (you can peruse my mild apnea; terrible sleep quality thread posted recently). Minimal events but a fair amount of flow limitations. On the kindly advice of several members here I upped my pressures a bit a few days ago, set min and max to the same (which I see you already have) and turned EPR to 3. My flow limitations immediately dropped a bit and I've been waking up much more refreshed and the headache/malaise/fatigue/startle reflex/etc. has gone. Just throwing that out there. Praying that you can find relief.

[Julie]

Have you had your blood pressure checked lately? Sounds like it might be low to begin with, and Cpap makes it lower, so you feel faint when standing and/or the tremor... ask your doctor about it, also maybe for a referral to an orthopedic or neuro. doctor for back problems (? sciatica). Not sure what you mean by loss of power...?

[weiss27md]

I would get a full blood panel including a full thyroid panel.

[Wellhellothere]

Thank you for the feedback guys! Don't know if this is a handy way of interacting and replying to your input, but here you go:

Do you take any medications of any kind (even OTC)? If so, what?

I occassionally take some supplements in the hope of improvement. Mostly Omega 3, Magnesium and vitamins B12 and D. Apart from that no meds. I do practice intermittent fasting, which has helped massively with weight loss.

How is your sleep quality? Do you wake often during the night and if so, any idea why?

My sleep is rather stable and a decent 8 hours of uninterrupted sleep. Do wake up for a sanitary break, but that's about it. When I wake up in the morning I'm hardly refreshed and usually lay in bed for 30-60 minutes to 'actually' wake up and let me adjust/recover from me sleep

I see you are on fixed cpap pressure....have you ever tried auto adjusting mode?

I see you are in Holland and they do thing a bit differently where you live....are you okay changing things yourself?

I could gradually increase the settings and see if it does anything but indeed, in the Netherlands it is very discouraged to change settings oneself. I will suggest the apnea nurse to increase the pressure. Does the EPR kick in from a pressure of 7?

I upped my pressures a bit a few days ago, set min and max to the same (which I see you already have) and turned EPR to 3. My flow limitations immediately dropped a bit and I've been waking up much more refreshed and the headache/malaise/fatigue/startle reflex/etc. has gone

That gives so much hope and good to read that these seemingly elusive symptoms can actually be tackled. Any idea what can cause flow limitations? Would you care to share what the old and new settings were? I have the strong impression what my nose is too congested from using the machine.

Not sure what you mean by loss of power...?

To give you an idea: I recently painted a little wall and struggled to apply power/pressure to the roller as my muscles were just spent and sore. Felt like I had already painted the entire house and not just this little wall. Will have a look into my blood pressure!

[Pugsy]

EPR is of course exhale pressure relief and a per cm drop of the pressure during exhale. So a setting of 3 EPR means a drop during exhale of 3 cm (setting of 2 would be 2 cm drop) but remember the machine can't ever go below 4 cm so even if you set EPR to 3 with your current cpap fixed setting of 5.4 the most drop you can get is 1.4 because the machine won't go below 4.
To get the full effect of 3 EPR a person has to be using the 7 cm pressure.
Now do you need the full effect? Don't know...it's a comfort thing. Whatever feels good to you in terms of your own comfort and ease of breathing with the machine.

I usually tell people to set the machine to at least the 7 cm pressure and then play with all the settings including off and see which simply feels more natural to them and use that setting. The thinking being that if we are more comfortable with our breathing we are likely to fall asleep easier and maybe sleep better.

7 cm is probably more than you technically need in terms of apnea prevention but it hurts nothing to use a little more than is maybe technically needed if it helps you sleep better and feel better during the day.
The only problem with using more pressure...remote chance of it causing air in the gut issues or even more remote central apnea triggering. If it does then we re-evaluate things.

Your flow limitation graph is a bit active. Far from horrible though....but it wouldn't be impossible for those low level air flow reductions to be a factor in sleep quality and how you feel. Increasing the pressure to 7 and making use of EPR set to 3 will likely help with the flow limitations as long as those FLs aren't nose related.
To give you a reference point for FL graph comparison...here's mine. Pretty boring for sure but I have never had much FL anyway.
I have seen much worse than yours but there is a chance that reducing your FLs might make you feel and sleep better. I can't guarantee it but I feel it is worth at least trying. Sometimes the least little change in something ends up making marked changes in how we feel.

[Wellhellothere]

Thanks for the feedback Pugsy!

I'm having a closer look at my flow limitations and am a bit confused to wether these constitute RERA's. My hypothesis is that my current symptoms are mostly linked to the way that i breathe with the CPAP on, and not necessarily having obstructive apnea's. I dive into UARS on this forum has helped me to get up to speed in what UARS is and how flow limitations play into it, but I'm not confident enough in my understanding of what the flow rate and limitations mean and use this information towards my apnea technician.

I've added a screenshot of this nights sleep and the flow rate doesn't seem quite right to me. Looks as if my in-breaths are quite laboured, which might have caused me to jank off my mask while sleeping. Do you see anything deviating from 'the norm' and could possibly bring my up to speed on how to spot/calculate RERA's?

Many thanks!

[Pugsy]

Your breaths look like some of them are flow limited breaths see the chart below. Note the shape at the apex of the breath.
Your machine isn't flagging RERAs but that doesn't mean much. It's not an easy flag to make since the machine doesn't know sleep status and I take RERA flags or lack of with a grain or salt. They aren't really easy to spot based on the flow rate graph...the changes are much to subtle.