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[Treatment] Lost weight, no doc, can't get my settings right...
#1
Lost weight, no doc, can't get my settings right...
Greetings, and thanks in advance for your help. 

I've recently lost a LOT of weight, went from 108kg to 75kg, and I was diagnosed at the heavy weight in my mid twenties, I'm 38 now. It has been a long time since I've been at a healthy weight, and I've also quit drugs, alcohol, and smoking in the years since my diagnosis. The problem is I live abroad in the countryside in Japan, and there just isn't a sleep doctor around to help me manage this. I've picked up supplies and machines while visiting my home of Canada, but besides that, I'm on my own. 

Problems:

1. Lost weight, and suddenly had major issues with the pressure being too high. Unbelievable gas, waking up, can't keep my mouth shut, the works. So, I started to tinker. 
Rx was for 8-14cm, and I changed it to 4-14, which helped me fall asleep do to ramp, but other issues persisted. I dropped the pressure to 4-8.5 (my avg +1) and saw a large improvement.

2. Noticed for the first time (I never really paid attention before) that I have a central apnea and this is my current main concern, as it wasn't what I was diagnosed with. Probably it is treatment emergent. 

3. Continued to lose weight, and the pressure continues to feel too high. Air exiting my mouth, dry mouth, leaks, etc. 
Lowered the pressure yet again, now 4-7 and felt better, but waking up with a strange feeling sometimes. Like a dizzyness? Or something similar to lack of air, but *not* that. It is a weird sensation that I've never had and can't quite put into words. Actually, my gut tells me that it is the APAP getting in the way of my normal breathing. 

Help me please:

1. Can you help me understand my data and where my settings may need to be changed?
2. Over, and over, and over again, I am pointed in a direction that the machine is too strong for me, is there any way I can tell if I have made enough lifestyle changes that I no longer need it? A sleep study is simply unavailable to me for the mid-term. I'm also still losing weight, the last 8 kg should be off by the spring. 
3. Help me to understand this central apnea. Is this another sign that the pressure is just too high?

Today was my first time looking at the data in OSCAR, so if there's another screen I can share to help, please let me know. 

Again, thanks for taking the time, I've been fiddling for months and my sleep is suffering so much since I lost weight, I'd really like to get it back into a good place.


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#2
RE: Lost weight, no doc, can't get my settings right...
I'd like to add one thing, and that is that the screenshots are from last week where my levels were set at 4-8.6. Dry mouth, etc issues were present. The weird feeling that is hard to describe, happened when I lowered the pressure to 7, and is on different days. I thought the screenshot provided was a more stable situation, so that is why I linked that.
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#3
RE: Lost weight, no doc, can't get my settings right...
Welcome to the board.

You are doing fine with the settings you have BUT I think you would be able to sleep better if you use EPR.  We use EPR to treat flow limits.  Flow limits drive up the pressure of your cpap and with the addition to EPR you should sleep better without feeling any difference in the therapy.

To use it we need to do a couple of things.

Change the min to 7
Turn on the EPR to Full Time

Set EPR to 3

give it a try and post again tomorrow.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#4
RE: Lost weight, no doc, can't get my settings right...
Thanks for the reply. EPR is already on and set to 3 and full time. Is there something that made you think it wasn't set?
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#5
RE: Lost weight, no doc, can't get my settings right...
No - the problem was that the cpap can only go down to 4, it is the lowest it can go so your setting the EPR did not do anything.  The way it works is min - EPR is the exhale number.  So min 4 - 3EPR is still 4 - EPR does nothing.  I wanted to make sure you moved the min up to 7 So Min 7 - EPR 3 = 4 exhale.

So the correct settings for it to work is

Min 7
EPR full time
EPR 3

Just making sure you had it it correctly.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#6
RE: Lost weight, no doc, can't get my settings right...
Yep, I was going to say the same thing, try CPAP straight 7 with EPR 3, or maybe even CPAP 6 EPR 2 and see how it goes. However, your dizziness may be related to hypercapnia, which is excess CO2 from rebreathing. This would be a problem resulting in pressure too low to clear your exhaled air from the tubes before you breathe it back in. Try straight 7 with EPR 3 first, and see how we do.

If you have a wearable for sleep tracking and a recording oximeter, you can try doing your own in-home trial and see how things go, but it is very far from a confirmed all-clear. Best thing to do would be to start wearing it for some nights still using the machine, then drop the CPAP for a few nights and compare. However, as you know, a real sleep study is the best way to be sure you are good.
Look, I'm an engineer, not a doctor! Please don't take my opinion as a substitute for medical advice.
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#7
RE: Lost weight, no doc, can't get my settings right...
Got it. Thanks to you both for the info. I've made the adjustment to the settings, but I've caught a chest cold, so I'll post an update in a few days when I'm better and the data isn't skewed. 

Really appreciate the help!
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#8
RE: Lost weight, no doc, can't get my settings right...
Went down for a big nap this afternoon, was about 2.5 hours. The new settings were a flop, unfortunately. Falling asleep was tough, the ramp time would need to be adjusted but then within 30 minutes the pressure woke me up. Felt way too strong and was exiting my mouth as a result.

I put the min to 5 and the EPR to 1 and had a good nap after that though.

As I wrote above, I think my pressure is still quit high (on the inhale).

After I get over this cold, besides any other recommendations I'm thinking to just set the machine at 4cm in CPAP mode (the min possible setting essentially) and see how my AHI is. I wear an oura ring too which watches my sp02, which is always at 98 percent or better, so between those two it may give me an idea of if therapy is even needed at my current weight.
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#9
RE: Lost weight, no doc, can't get my settings right...
You do what is right for you but 4 is the absolute lowest and machine can go, it is used for small children.  7 would be for a normal adult and many people need much more or they feel air staved.  I cannot be under 9 or I am taking my mask off to get enough air.

You are saying the pressure seems to much.  The amount of pressure is in centimeters.  If you took a full glass of water and a straw.  mark Centimeters on the straw.  put your straw at 4 cm and breath just enough for bubbles.  That is 4 min.  Now mark it to 8 cm and blow just hard enough to make bubbles.  That is 7 Cm.  Not much pressure is it.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#10
RE: Lost weight, no doc, can't get my settings right...
Make sure the mask type setting is correct for your nasal pillows and not set to full face mask. You can also consider mouth tape.

I recently went for a week from a mile high to sea level. I used my CPAP at first but the second night it felt like it was making me over breathe. I stopped using it and my oxygen was still almost a straight line at 98. So if you are getting great oxygen with the Oura (though I don't know it's reliability) it's possible you don't need it. Just realize that the Oura doesn't take measurements often enough to detect oxygen variability / drops. I think your experiment with CPAP 4 (no EPR) for several nights followed by several nights with just the Oura is a worthwhile experiment and won't be harmful. But if you are still getting AHI > 1 then you still have apnea and it would be better to treat it.

You might benefit from myofunctional exercises that you can find online, to help your tongue stay up so that the pressure isn't coming into your mouth. In your case, finding one stable pressure might be easier than a range.
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