Low daytime SPO2 and fatigue

Are you really using an antibacterial filter as it says in the image?

I use a filter, not sure if it's antibacterial or not. There is a little door on a side of the machine for filter.

trying to undersand your "sometimes red sometimes green" statement. Are you intentionally letting your mask leak to "let out the hot humid air"?

Yes, letting some leak to allow CPAP use, otherwise it's very difficult to breath, would not be able to sleep with mask. I know CPAP efficacy is compromised, but still sleep better and feel better than without CPAP. Tried nasal pillows last year, leaks much lower, but sleep disruptions worsened. Will try nasal pillows again

vps wrote: ↑

Sun Mar 19, 2023 9:39 am

I use a filter, not sure if it's antibacterial or not. There is a little door on a side of the machine for filter.

That little door is for the regular filters and it's NOT considered an antibacterial filter.
Antibacterial filters go between the humidifier outlet and long hose connection. If you have anti bacterial filter saying yes in your clinical settings and you don't use one that can affect the pressures. Need to change that setting to off.

Bacterial filters look like this
https://www.cpap.com/productpage/generi ... nes-5-pack
and if you aren't using one then you need to make sure the machine settings doesn't say that you are.
OSCAR might have it wrong but you need to go into the clinical settings menu and confirm or not.

vps wrote: ↑

Sun Mar 19, 2023 9:39 am

Are you really using an antibacterial filter as it says in the image?

I use a filter, not sure if it's antibacterial or not. There is a little door on a side of the machine for filter.

All of us use filters in our machines. But even the Hypoallergenic filters are not Antibacterial filers. I see Pugsy referred to that as I was writing.

trying to understand your "sometimes red sometimes green" statement. Are you intentionally letting your mask leak to "let out the hot humid air"?

Yes, letting some leak to allow CPAP use, otherwise it's very difficult to breath, would not be able to sleep with mask. I know CPAP efficacy is compromised, but still sleep better and feel better than without CPAP. Tried nasal pillows last year, leaks much lower, but sleep disruptions worsened. Will try nasal pillows again

Making your mask leak is not a good solution for helping you sleep with it.
When you say "otherwise it's very difficult to breath" which of the following do you mean:

1. I have trouble inhaling if the mask is not leaking
2. I have trouble exhaling if the mask is not leaking?

Who set up your minimal and maximal pressures and when was that done?

Many of us had "trouble breathing" when first tried sleeping with this foreign object on our face, blowing air in. In normal human breathing, exhalation is simply a relaxation of the muscles. When on CPAP, we have to learn to exhale intentionally against the incoming pressure. We do that when blowing balloons, but we're not used to doing it breath by breath and it feels unnatural.

A process of Systematic changes in a) pressure and comfort settings and b) in getting used to breathing with and against the pressure has helped many of us.
Suggestion to start with: Put yourself in a relaxed situation in a sitting position - reading, listening to music, watching TV -- something you like.
Disable the ramp on the machine.
Turn on the CPAP, put the mask on, make sure it's not leaking, and focus on what it is that's bothering you.
If your problem is exhaling against the pressure, lower the maximum pressure for now - put it on 7; make sure the mask doesn't leak, and just breathe - sitting, relaxing. don't try to sleep or anything. Just get used to breathing with the mask, against the pressure.
Our aim is for you to learn you can breathe without making your mask leak. That's all at this point.

vps wrote: ↑

Sun Mar 19, 2023 4:27 am

Robysue1 thanks for your help.

let us know if you want our ideas on what to do about the leaks.

Yes, your ideas will be greatly appreciated!

1) Are you a mouth breather?

Mainly nose breather, but when nose is blocked (often!) I'm mouth breather.

If you are a mouth breather and you are using the P10 nasal pillows mask (as shown in your signature), that probably explains the long periods of excess leaking. You may want to consider getting a full face mask and see if that's more comfortable for you.

Since you are using a full face mask, are you fitting the mask correctly?

Using fit test on machine to check. It's difficult for me to achieve 100 percent green face - it feels like exhaled air stays in my mask and I inhale warm and humid exhaled air. So usually fit is a compromise between green and red, with green majority.

When I ask if you are fitting the mask correctly, what I mean is this: Are you correctly adjusting the head gear on the mask? And are you fitting the mask when you are lying down in your favorite sleeping position.

But if you are a mouth breather, then need to address the mouth breathing as well.

3) Are you assembling the equipment correctly?

yes, no leaks in joints

4) Does the mask cushion have a tear in it somewhere?

No, cushion is 3 month old

If the cushion is 3 months old, it's worth swapping it out. While most of us get more than 3 months of wear from one cushion, some don't. Also, how often do you wash the cushion and how do you wash the cushion?

5) Does your hose have one or more pin-hole sized leaks or is there a tear near one of the couplings?

No can't see any faults

You may need to do more than just look. When I'm trying to determine if a hose has a leak, I often hook it onto my bathroom sink's faucet and turn the water on as high as possible. Then I partially block the other end of the hose. If there's a leak, I usually see a stream of water coming out of the hose.

You also write:

vps wrote: ↑

Sun Mar 19, 2023 9:39 am

trying to undersand your "sometimes red sometimes green" statement. Are you intentionally letting your mask leak to "let out the hot humid air"?

Yes, letting some leak to allow CPAP use, otherwise it's very difficult to breath, would not be able to sleep with mask. I know CPAP efficacy is compromised, but still sleep better and feel better than without CPAP. Tried nasal pillows last year, leaks much lower, but sleep disruptions worsened. Will try nasal pillows again

As ozij said, we need to know exactly what you mean when you say it is difficult to breathe when the mask is not leaking.

Are you having trouble exhaling fully and comfortably if the mask is not leaking?

Or are you having trouble inhaling fully and comfortably if the mask is not leaking?

As for the "hot, humid air" you are trying to let escape from the mask: Since you aren't using a heated hose or the humidifier, that warm, moisture is from your own exhalations. The P10's mesh vents can aggravate the problem, particularly if they seem to get 'stopped up' with moisture. You might do better with a mask that does not have a built-in diffuser to its exhaust vents. Also, run the hose outside your bed covers.

As a last resort, you could also pack the humidifier tank with ice cubes while leaving the humidifier OFF.

Pugsy and Ozij thanks for spotting this - my filter is not antibacterial, but setting has antibacterial filter Yes for some reason. Corrected settings

which of the following do you mean:
I have trouble inhaling if the mask is not leaking
I have trouble exhaling if the mask is not leaking?

Inhaling is manageable, exhaling is difficult

Who set up your minimal and maximal pressures and when was that done?

Respiratory consultant in April 2022. However, his approach is freestyle, he lets me try different settings and decide what works for me

if your problem is exhaling against the pressure, lower the maximum pressure for now - put it on 7; make sure the mask doesn't leak, and just breathe - sitting, relaxing. don't try to sleep or anything.

Thanks, will try this.
My another concern though is about low daytime SPO2 which doesn't seem to be related to apnea.

you are a mouth breather and you are using the P10 nasal pillows mask (as shown in your signature)

Robysue1 thanks for spotting error in my signature. I've tried nasal pillows, didn't like those. Now using FFM

how often do you wash the cushion and how do you wash the cushion?

Every day with Palmolive hand wash. Agree, it's time to get new cushion

When I'm trying to determine if a hose has a leak, I often hook it onto my bathroom sink's faucet and turn the water on as high as possible. Then I partially block the other end of the hose. If there's a leak, I usually see a stream of water coming out of the hose.

Good idea, tried it, no leaks

Are you having trouble exhaling fully and comfortably if the mask is not leaking?
Or are you having trouble inhaling fully and comfortably if the mask is not leaking?

Exhaling against pressure is difficult, feels like my eyes may pop out

You might do better with a mask that does not have a built-in diffuser to its exhaust vents. Also, run the hose outside your bed covers.
As a last resort, you could also pack the humidifier tank with ice cubes while leaving the humidifier OFF.

mask that does not have a built-in diffuser to its exhaust vents would be great but it is hard to find!
Ice cubes - already doing that, especially in summer

vps wrote: ↑

Sun Mar 19, 2023 12:55 pm

Inhaling is manageable, exhaling is difficult

Who set up your minimal and maximal pressures and when was that done?

Respiratory consultant in April 2022. However, his approach is freestyle, he lets me try different settings and decide what works for me

if your problem is exhaling against the pressure, lower the maximum pressure for now - put it on 7; make sure the mask doesn't leak, and just breathe - sitting, relaxing. don't try to sleep or anything.

Thanks, will try this.

Let us know how it feels.

My another concern though is about low daytime SPO2 which doesn't seem to be related to apnea.

That is concerning - I second the advice given to you by Miss. Emerita and Robysue: Go to a physician who will take that seriously.
You don't say how you know about your low oxygen saturation duirng the day -- but if that was based on a professionall SPO2 tracker, you absolutely need to find a doctor who will take that seriously.
Find a doctor who will prescribe a 24 Holter test for your heart, and give you any further tests necessary. I know people who have had a 24 hour BP tracking, people who have had heart echo tests, etc.

Back to CPAP and sleep apnea:
Your aim is to teach your brain that although exhaling against pressure isn't natural, it's not the same as choking because your airway is obstructed, and is no reason to panic. Your brain has been used to waking you up whenever it senses any breathing difficulty caused by obstructions, and has not learned to distinguish between real danger, when your airway collapses, and the effort needed to breath against pressure. It's not a big effort (unless you have pulmonary disease) - but it's unnatural, which given the experience with "choking when you sleep" has your brain ringing alarm bells.

If you find you can keep the mask sealed and breath out against the pressure (keeping your EPR at 3) try raising the pressure in small increments. You'll have to play it by ear: focus on feeling you can exhale and on keeping the mask sealed. See how you feel if you change EPR from 3 to 2. Your sleep apnea will only be treated when the mask is properly sealed, the pressure correct, and you can sleep with it.
Once you feel comfortable with a sealed mask, try it in bed.
Some people need supplemental oxygen - 24 hours a day, some only when they use the CPAP. You need a trustworthy doctor who will consider those options as well.

Sometimes, if we can at all afford it, we have to pay for good specialists, even if our health insurance (national or not) will not pay for it. Health is a precondition for enjoying all other things that money can buy. Insurance can refuse to pay, but it can't keep you from paying yourself - if you have the financial ability to do so.

Find a doctor who will prescribe a 24 Holter test for your heart, and give you any further tests necessary. I know people who have had a 24 hour BP tracking, people who have had heart echo tests, etc.

I had all above tests plus cardiac MRI and angiogram. Low daytime SPO2 seems to be caused by something other than my heart. Having respiratory appointment soon, will raise this.

Some people need supplemental oxygen - 24 hours a day, some only when they use the CPAP

I've asked my GP about this - was rejected because potential side effects (no details given). What are downsides of this treatment?

if we can at all afford it, we have to pay for good specialists, even if our health insurance (national or not) will not pay for it. Health is a precondition for enjoying all other things that money can buy. Insurance can refuse to pay, but it can't keep you from paying yourself - if you have the financial ability to do so.

My insurance not bad, covers all consultants in Ireland. My question is how to find good specialist. There are reviews for hotels and restaurants, but not for doctors. My friends have different health issues so no chance to share information

Let us know how it feels.

Tightened my mask, put ice cubes in humidifier - inhaling and exhaling manageable, main discomfort is warm and humid feeling of exhaled air which it seems I'm inhaling again. Leaks reduced - see imgur below.
https://i.imgur.com/WblyAHM.png

The leaks are much much better!
Were you at all asleep between 04:45 and 06:00?

quote=vps post_id=1436555 time=1679428130 user_id=81859]

Some people need supplemental oxygen - 24 hours a day, some only when they use the CPAP

I've asked my GP about this - was rejected because potential side effects (no details given). What are downsides of this treatment?
[/quote]
Ask the respiratory specialist about O2 supplementation, night or day or both, and of its possible side effects.

How do you know your SPO2 is low during the day? Was that a result in one of those tests, and the GP decided to ignore it?[

Were you at all asleep between 04:45 and 06:00?

Not really, after 4am usually it's drowsing, not real sleep

How do you know your SPO2 is low during the day?

GP measures SPO2 from time to time, but doesn't act on it. Also I own Contec finger oxymeter so do it myself.
Any views if ASV machine would be beneficial for me? Never tried it

vps wrote: ↑

Wed Mar 22, 2023 5:12 am

Were you at all asleep between 04:45 and 06:00?

Not really, after 4am usually it's drowsing, not real sleep

Good. That means all those events in that "sleep wake" period have justly earned the moniker "Sleep Wake Junk", and we can discount them.

How do you know your SPO2 is low during the day?

GP measures SPO2 from time to time, but doesn't act on it.

Any views if ASV machine would be beneficial for me? Never tried it

Not responding because I don't know.
You may want to do some reading about Obesity related hypoventilation and here Obesity hypoventilation syndrome: a current review before you meet the respiration specialist.

Obesity hypoventilation syndrome is a respiratory consequence of morbid obesity that is characterized by alveolar hypoventilation during sleep and wakefulness.

In order to optimize the oxygen cost of breathing obese individuals adapt by breathing small tidal volumes and at higher respiratory rates or “rapid shallow breathing” which is energy inefficient

We see that in your flow graph.

Hello

Quick update on my appointment with respiratory consultant in April and some questions:

- supplemental oxygen prescribed for use with CPAP machine, contacted supplier to arrange this
- sleep study and arterial gases tests planned for late June
- new type of machine (Bilevel or ASV) might be necessary to replace CPAP, depending on results of oxygen therapy
- blood test planned in May to investigate root causes of breath shortness, chest tightness, fatigue, suppressed hematocrit/haemoglobin and low daytime SPO2
- chest and lungs CT scan was done in April - no issues found
Any views on this plan?

Another question - going to buy new mask to replace my FFM Airfit F20. As I mentioned in earlier posts F20 causes some discomfort - warm and humid feeling of exhaled air which it seems I'm inhaling again. Tried nasal pillows, didn't like those, would probably prefer FFM again, but open to suggestions.

Robysue1 in April wrote "You might do better with a mask that does not have a built-in diffuser to its exhaust vents". Which mask has no diffuser, just holes as exhaust vents?

Thanks a lot!

I'm afraid I don't have anything to offer about masks, but I did want to say how glad I am you're getting some good medical attention. Did the respiratory consultant say anything about daytime O2 supplementation?

I hope you and your doctors will bear in mind the possibility that several independent conditions are responsible for your symptoms. But most of all I hope the new rounds of testing will reveal what's going on.