Sudden stop of positive CPAP therapy effects

[Hoeksel]

Hi all,

New member from The Netherlands here. Been a lurker for a while, time to ask my first question in this great helpful board!
Edit: while writing my first post question became questions .

Details: 46 year old male, 94 kg's/187 cm (BMI ~26). Diagnosed with mild OSAS (AHI < 15) June 2021, after years of health issues and no clue why. Due to my severe issues I was granted a CPAP which I started a week later. I have been 100 % compliant from the start. Starting pressure was 5,4 without ramp/ERP on a ResMed 10 AutoSet with N20 mask (never got an explanation why this was chosen). Shortly after the start the pressure was reduced to 5 as my AHI numbers were great. Also important to note, due to my education and character I am a person that (in the context of OSAS) approaches this data-driven and where needed I take control. I am not afraid to change settings (against advice, in The Netherlands this should be done by support people). The issue I have with the support is they only seem to look at the AHI number, and for me, there seems to be much more to it. I wont show OSCAR data yet in this first thread from me, but I do use it and can show data if needed.

So after getting used to the mask, I slowly started noticing positive effects. My AHI has been ~0.5 (monthly average) from the start, and I have never seen a daily AHI > 3. So on paper I should be great, right? As stated the first 3-4 months I noticed positive effects that make me believe in the CPAP therapy.
- finally able to sleep 6-7 hours in 1 go (without being aware if I woke up or not)
- energy during the day improved
- jaw pain went away
- I started making saliva again

But after 4 months some of the pre-CPAP problems started again. I sleep in well most of the time, but I wake up often on ridiculous times (between 02:00-05:00) and often I am unable to sleep afterwards. Sometimes these times are reflected in a measured obstructive event and/or an SpO2 dip (Garmin Forerunner 745) but not always. I am broken due to lack of sleep and never feeling restored or energized. At the moment the support is also surprised, as my therapy did start of well. My Garmin sleep analysis shows clearly where it goes wrong: 1) my restlessness is poor and 2) my REM is off (sometimes too short, most of the time too long). Deep sleep and light sleep are good or excellent. Duration is all over the place, and I need afternoon recovery sleeps although they do not really recover me.

Question 1: does anybody recognize this relapse and what was it you did/learn? Did you recover from it and how?

Obviously I have thought about this a lot. The first thing we tried is lower the pressure further (4,6) without effect, start APAP mode (4,6-6,0) again no effect. These tips I got from my support people. After a few days I started noticing what was part of the issue. For some reason, all of a sudden, this low pressure felt claustrophobic, as if I did not get enough air. This is where I started to take control against the advice and started increasing the pressure. I am not sure yet if this helps yet, as I just started, but I slowly build up to my current CPAP 8,4 no ramp/EPR 2. But my "gut feeling" tells me my wake-up times are extending (more like 05:00, not 02:00 anymore) and my mood in general is better. I have the feeling I have to increase pressure even more, but for now I want to stay on these values for 1-2 weeks to be sure on the effects and go from there. Number-wise nothing changes significantly (AHI, SpO2). I do see a change in the flow profile (I think) but I have to dive in more. What I mean is that with higher pressure the measured flow profile shape is more and more going to a healthy shape (according literature), while with lower pressure there seems to be a disturbance. I do not have leak issues. I do not think I have flow limitation issues, but I do see a reduction with higher flows. For example, typical 95 % flow limitation numbers over my whole therapy period are 0.07 with a maximum of 0.44. The few days at higher pressure are 0.04 with a maximum of 0.16 so a50 % reduction but I have no idea what these numbers indicate.

Question 2: are these flow limitation numbers and the reduction significant? Does it hint to increasing the pressure being the right direction?

Reading on this forum and a Dutch OSAS forum, I started thinking my issue might actually be more like UARS (not fully accepted as a real thing in The Netherlands). Why? I am not the stereotype (weight, age), my AHI is great (pressure regime 4,6-10), my SpO2 averages 95-96 % and my lowest dip is 84 %. But especially because all my issues started about 6 months after starting running. I started in April 2017 because I felt crap (bad sleeping, lack of energy). Before that I never really did sports. First Afib started, then stomach issues, and my sleep got much worse.......It took me some time (late 2020) to discover stopping running slowly solved these issues (except for the sleep/energy issues). So my thinking here is: I might have UARS and because of that already had OSAS-like issues sleeping. With running (I am the all-in type) I tried taking in the oxygen for my runs but due to limitations I put much strain on my body creating all these issues from bad to worse. The thing is, nobody mentions intense exercise as a start of their OSAS/UARS journey (at least I was not able to find other people thinking this way).

Question 3: can intense exercise worsen OSAS/UARS issues and if so, does that indicate something?

While picking up running Afib started ~ 6 months later, but I also developed a burping issue ~ 12 months after picking up running. And this burping is still present. It is not related to eating (not 100 % sure, as some specific foods seem to trigger more burping), and it does not come from the stomach but from the throat. Doctors I visited did not check/listen, they simply said "aerophagia" (could be of course). This burping is strongest when standing up after lying down (it does not happen when lying down), and certain positions (seated toilet visit, driving my car) and activity (walking, exercise). So every morning standing up starts with a burping session . This also makes me believe "something is wrong" with my breathing system. Last but not least, I recently visited an osteopath (is this the correct naming?) who verified my diaphragm was like a brick wall. She is now doing her thing to open it up (I have a check-up next week). Also here, I could not find references of people who have this in relation to running or OSAS/UARS.

Question 4: any recognition on this forum?

Well, enough for now. Thanks for those taking the time reading my story and looking forward to responses!

Regards,

Hoeksel

[Julie]

Oh, please post Oscar stats - would help us so much to help you. Just one thing though in case you weren't explained well - the low pressure setting is the one that 'does the job', while the max could/should be left high - e.g. 20 unless there's a good reason to lower it, but lowering an already very low min. setting won't help (4 being the default machine low in any case), so possible returning it to at least a slightly higher place (e.g. 6 or 7) might help... but better to see Oscar to be sure of what's happening.

[ChicagoGranny]

Last but not least, I recently visited an osteopath (is this the correct naming?) who verified my diaphragm was like a brick wall.

Are you speaking of surgical plication of the diaphragm? ---> https://www.bcm.edu/healthcare/specialt ... -diaphragm

BTW, at any pressure below 7.0 cm, I get that "suffocation" feeling.

[zonker]

Hi all,

welcome to the zoo!

I wont show OSCAR data yet in this first thread from me, but I do use it and can show data if needed.

please DO show your oscar data. not everyone has the exact same symptoms, so we need to see the breakdown of events and such. it will really help folk help you.

i'll let others handle the uars questions and such. i don't have the "learnins" to answer!

OH! i just realized that we have a software problem on the forum. attachments might not be available to you. if you could post your charts elsewhere and link them here in the thread, that would probably be best.

good luck!

[Miss Emerita]

Welcome! If I'm getting the right picture, you started feeling a bit better after introducing EPR -- is that right? If FLs were part of your problem, the EPR might be responsible for helping with them. And yes, FLs can, for some people, mess with normal sleep cycles. If you're not having a lot of central apneas, try raising your EPR to 3.

At pressures of 4 or 5, many people feel a bit starved for air, so setting your minimum to, say, 7. This will allow you to have your full EPR of 3. (The machine can't go lower than 4.) Normally we try to avoid giving advice about settings without seeing charts, but these are pretty minor changes, and if you're not having a lot of CAs, you can't in any way hurt yourself by making them.

Your period of intensive physical activity may have put a lot of stress and strain on your muscles, joints, tendons, and ligaments, which in turn could cause discomfort that makes it hard to find a good sleep position. Stopping to let your body heal makes some sense, but consider trying moderation, even though it goes against your nature.

The burping might be aerophagia, or it might be related to GERD (gastroesophageal reflux disease), especially if you notice it after eating certain foods. Here's some advice from the Mayo Clinic:

Lifestyle changes may help reduce the frequency of acid reflux. Try to:

Maintain a healthy weight. Excess pounds put pressure on your abdomen, pushing up your stomach and causing acid to reflux into your esophagus.
Stop smoking. Smoking decreases the lower esophageal sphincter's ability to function properly.
Elevate the head of your bed. If you regularly experience heartburn while trying to sleep, place wood or cement blocks under the feet of your bed so that the head end is raised by 6 to 9 inches. If you can't elevate your bed, you can insert a wedge between your mattress and box spring to elevate your body from the waist up. Raising your head with additional pillows isn't effective.
Don't lie down after a meal. Wait at least three hours after eating before lying down or going to bed.
Eat food slowly and chew thoroughly. Put down your fork after every bite and pick it up again once you have chewed and swallowed that bite.
Avoid foods and drinks that trigger reflux. Common triggers include fatty or fried foods, tomato sauce, alcohol, chocolate, mint, garlic, onion, and caffeine.
Avoid tight-fitting clothing. Clothes that fit tightly around your waist put pressure on your abdomen and the lower esophageal sphincter.


I'm not trying to play doctor here; you should always talk over your problems with your own physician. But these are some harmless experiments you could try in order to see whether they can help.

[Hoeksel]

Last but not least, I recently visited an osteopath (is this the correct naming?) who verified my diaphragm was like a brick wall.

Are you speaking of surgical plication of the diaphragm? ---> https://www.bcm.edu/healthcare/specialt ... -diaphragm

BTW, at any pressure below 7.0 cm, I get that "suffocation" feeling.

I did not get an official diagnosis or anything, my osteopath just could not get under my ribs because everything was so stiff. The second session she was already able to do more. This week I will have a third session. But I will mention it when I see my lung doctor. Besides the sleep test, the lung doctor did not check anything yet (we started CPAP immediately) and maybe my current results indicate we need to check more like your example.

[Hoeksel]

Welcome! If I'm getting the right picture, you started feeling a bit better after introducing EPR -- is that right? If FLs were part of your problem, the EPR might be responsible for helping with them. And yes, FLs can, for some people, mess with normal sleep cycles. If you're not having a lot of central apneas, try raising your EPR to 3.

At pressures of 4 or 5, many people feel a bit starved for air, so setting your minimum to, say, 7. This will allow you to have your full EPR of 3. (The machine can't go lower than 4.) Normally we try to avoid giving advice about settings without seeing charts, but these are pretty minor changes, and if you're not having a lot of CAs, you can't in any way hurt yourself by making them.

Your period of intensive physical activity may have put a lot of stress and strain on your muscles, joints, tendons, and ligaments, which in turn could cause discomfort that makes it hard to find a good sleep position. Stopping to let your body heal makes some sense, but consider trying moderation, even though it goes against your nature.

The burping might be aerophagia, or it might be related to GERD (gastroesophageal reflux disease), especially if you notice it after eating certain foods. Here's some advice from the Mayo Clinic:

Lifestyle changes may help reduce the frequency of acid reflux. Try to:

Maintain a healthy weight. Excess pounds put pressure on your abdomen, pushing up your stomach and causing acid to reflux into your esophagus.
Stop smoking. Smoking decreases the lower esophageal sphincter's ability to function properly.
Elevate the head of your bed. If you regularly experience heartburn while trying to sleep, place wood or cement blocks under the feet of your bed so that the head end is raised by 6 to 9 inches. If you can't elevate your bed, you can insert a wedge between your mattress and box spring to elevate your body from the waist up. Raising your head with additional pillows isn't effective.
Don't lie down after a meal. Wait at least three hours after eating before lying down or going to bed.
Eat food slowly and chew thoroughly. Put down your fork after every bite and pick it up again once you have chewed and swallowed that bite.
Avoid foods and drinks that trigger reflux. Common triggers include fatty or fried foods, tomato sauce, alcohol, chocolate, mint, garlic, onion, and caffeine.
Avoid tight-fitting clothing. Clothes that fit tightly around your waist put pressure on your abdomen and the lower esophageal sphincter.


I'm not trying to play doctor here; you should always talk over your problems with your own physician. But these are some harmless experiments you could try in order to see whether they can help.

No, I did not feel better after using EPR. I started using EPR because I increased the pressure and it sounded logical to start with as I am not used yet to higher pressures. At the moment I even feel like getting no air at pressure 8.4, my nose seems the issue here. But good to get verification this gasping for air seems to be pretty common. Still, at some point in time I had no issues with low pressures like 5.0.

GERD: my burping is not perse related to food/eating, and in my doctor visits before the sleep apnea diagnosis I had an endoscopy and everything was fine.

I will make some screen shots that I can share, it is clear this is needed first .

[Hoeksel]

Here my first try to post OSCAR data. This is at CPAP mode 5.0 without ramp/EPR in the period where I was doing better after starting therapy July 20th. First the overview of a random picked day and a zoom-in on an event to show the flow shape mainly.

CPAP 5.0 15-09-2021 overview.jpg (722.84 KiB) Viewed 11107 times

CPAP 5.0 15-09-2021 detail.jpg (616.12 KiB) Viewed 11107 times

[Hoeksel]

Here the same CPAP 5.0 setting without EPR/ramp but where my therapy seemed not to work anymore. Two events happened. I went from normal air intake filters to hypoallergenic filters (official Resmed, should not impact anything), and on November 14th I woke up because the whole area where I live we had a power-outage. I woke up around 04:00 and was forced to sleep without CPAP. According my support people this should only impact me a day or a few days at the most. Still I have a strong feeling, and my partner as well, this is around when everything got worse. I even doubt the Resmed to actually supply the given pressure, as I feel gasping for air and I started to increase pressure to compensate.

CPAP 5.0 25-11-2021 overview.jpg (716.3 KiB) Viewed 11105 times

CPAP 5.0 25-11-2021 detail.jpg (608.85 KiB) Viewed 11105 times

[Hoeksel]

Here I started playing with higher pressures as I did not get anywhere. APAP 7.6-10.0 EPR 3. Please note this was a 1-timer so I was not adjusted to these pressures, and I felt not to great this short session because of the higher pressure.

APAP 7.6-10.0 22-12-2021 overview.jpg (661.01 KiB) Viewed 11105 times

APAP 7.6-10.0 22-12-2021 details.jpg (605.88 KiB) Viewed 11105 times

[Hoeksel]

Last post before I try to get some sleep: CPAP 8.4 EPR 2 after a few days the same pressure. I felt comfortable, except today as I not my nose is blocked for proper intake of air (also without mask).

Thanks for taking the time to take a look, curious for your feedback. Good night all!

CPAP 8.4 EPR 2 25-12-2021 overview.jpg (658.72 KiB) Viewed 11105 times

CPAP 8.4 EPR 2 25-12-2021 details.jpg (586.24 KiB) Viewed 11105 times

[zonker]

Thanks for taking the time to take a look, curious for your feedback. Good night all!

congratulations on getting your charts posted! just one tiny thing-it will help the experts if you format your charts as forum member grumpy here suggests-


"The easy way to set the OSCAR (v1.2) graphs in the preferred order and format:

1. Go to View menu - Reset Graphs - Standard

2. In View menu, turn on Sidebar

3. Again in View Menu turn off Daily Calendar and Pie Chart

4. Set Graph Height in File Menu -> Preferences -> Appearance Tab
The default should be 180.

On my setup, when set to 80, I get really squished up graphs.

At 192, the 5 graphs (flags, flow rate, pressure, leak, flow limit) are nicely spaced out.

At 160 I also get snores as the bottom graph.

5. Reset Graph Heights in View menu. This step may not be always necessary."

good luck!

[Hoeksel]

Thanks for taking the time to take a look, curious for your feedback. Good night all!

congratulations on getting your charts posted! just one tiny thing-it will help the experts if you format your charts as forum member grumpy here suggests-


"The easy way to set the OSCAR (v1.2) graphs in the preferred order and format:

1. Go to View menu - Reset Graphs - Standard

2. In View menu, turn on Sidebar

3. Again in View Menu turn off Daily Calendar and Pie Chart

4. Set Graph Height in File Menu -> Preferences -> Appearance Tab
The default should be 180.

On my setup, when set to 80, I get really squished up graphs.

At 192, the 5 graphs (flags, flow rate, pressure, leak, flow limit) are nicely spaced out.

At 160 I also get snores as the bottom graph.

5. Reset Graph Heights in View menu. This step may not be always necessary."

good luck!

Oeps, I did try to follow the guidelines but missed these. I will follow these guidelines with my next upload. Thanks!

[Miss Emerita]

Hoeksel, go into your settings and turn on the setting for antibacterial filter. I don't know that this will make much difference, but it'd be good to take care of that.

I think it will be valuable for your to stick with a given setting for at least a week so you can really see how it works for you. Sleep is so variable from one night to the next; it can take a while to spot a trend.

I would strongly recommend that you use EPR of 3. It seems to help your flow limitations some, and the FLs might be contributing to your feeling that you aren't getting enough air. if you like a fixed pressure, there's nothing wrong with that. I'd suggest the 8.4 that you seem to find comfortable.

I hope you can get your nose unstopped soon. Some people keep a full-face mask as a backup to use when they have trouble breathing through their noses; just a thought, in case this is a regular problem for you.

[Holden4th]

One thing that I saw was that you seem to get better results in fixed (CPAP) mode as opposed to auto (APAP). While most of us are not like this there are some who do much better with a set pressure and there are all sorts of reasons for this happening. It's just a matter of finding the optimum pressure. The Airsense has a titration process but I don't know if it works in CPAP mode. Someone here will know.

Just note that in CPAP mode any EPR setting stays constant. If you have a look at the sidebar on your first OSCAR chart you'll see that Min, Med and Max pressure are the same at 5.0. On Dec 22 when you were in APAP mode the Min/Med/Max varied as the machine responded to your events. Your EPAP was also variable and at higher pressures the full 3.0 range of EPR was used. Your sleep was also broken on this date. Have a look at your charts to see if it was a specific event that woke you up.