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Just a thought . . .
With me being unusually lazy today, I didn't read all the previous posts before posting this. Since I see you are using a P10, the micro diffuser can trap excessive humidity and clog. When it does this, the user may experience rebreathing high levels of CO2. This can cause headaches. Another member found that poking a few holes, using a very small needle, eliminated this rebreathing condition.
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Thanks for the reply. I didn't even have a humidifier attached to my CPAP until today, so I don't think rebreathing is the issue! That said, at some point I might do the same if regular brushing with a toothbrush doesn't unclog the micro diffuser...
Your doctor sounds ... odd. You most definitely should continue using your machine all night. I can't imagine why he'd suggest otherwise. And I also don't understand his attitude toward EPR.
U.S. insurance companies do not void coverage if patients change their own settings, though sleep clinics sometimes tell patients they do. I don't know what coverage you have in Japan, but I'd suggest you check directly with the company itself to see whether what the doctor has said is true.
I'm glad the headache is abating and hope it goes away soon.
Yes, I do agree he sounds odd. I do want to switch, but so early into treatment, it's a bit difficult...
In Japan, everyone has national health insurance. Only some people have private insurance. I'll try looking around to see who to contact.
In any case. It's the next morning and I feel a bit crummy. To be fair, I slept far later than I normally do, and there was a huge leak in the middle of the night. But I think I might call up my doctor and ask if I can't switch to the APAP setting going from 6.2 to 6.6 instead, because my AHI increased, flow rate looks worse than before, and more importantly, I feel worse and this time it's not a headache. Just a sense of jitteriness. My aerophagia is a bit better, but I sure am not!
IMHO set pressure to 7, the min to take full advantage of the "comfort" feature called EPR
Set EPR=3 to maximize your "comfort".
I'll bet those changes will. "accidentally" improve your flow limits along the way as they are high enough to be quite disruptive.
Since you are in CPAP mode by definition your machine cannot possibly provide a differential pressure between inhale and exhale of 3cmw that would behave as a BiLevel with 3cmw of PS which is designed to treat those flow limits you have.
Your machine is without question functionally a BiLevel with a 3cmw differential capacity otherwise known as pressure support.
Gideon - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter
Gideon, the problem is that Riayain's doctor for some reason is opposed to EPR and to a higher pressure, and in Japan she may lose insurance coverage if she changes her settings herself. She will be checking on whether that's really true, but it might be.
Riayain, I do hope you can find a more open-minded doctor. It can be hard to press doctors on the advice they give us, but with the one you have now, you might say you would like a limited experiment with a minimum of 7 and EPR of 3 since you're doing so well in adapting. If the doctor will say OK to that, and if you feel better on those settings, then your experience with them will be an excellent argument for sticking with them when the limited experiment is over.
02-08-2023, 08:57 PM (This post was last modified: 02-08-2023, 08:58 PM by Riayain.)
RE: New to CPAP, wondering how well it's going
Hm, well, I'm in a bit of a pickle. I called up insurance and they told me they couldn't answer me and I should speak with my doctor. Called up what I believe is the equivalent of a DME and they told me patients don't change the settings, they discuss with the doctor and the doctor changes it. And my doctor is the one who says I can't adjust the settings on my machine without voiding insurance.
For now, I'll call and ask if I can't change to the APAP setting with 6.2-6.6 and see how I do with aerophagia. (This is one of the suggestions the doctor made in response to my aerophagia yesterday.) I'll also keep trying to stretch out my P10 since I still have a bit of a headache and sometimes feel that it might still be a bit too tight. See how I go and if there's no improvement, go back and ask for a minimum 7 and EPR of 2 or 3. I'd like to just push ahead with a limited trial, but at the moment I don't think my doctor will listen to me...
I called my doctor and he said that my AHI is still in normal range and my aerophagia has gotten better, so he doesn't suggest changing the pressure right now and wants me to give it a bit more time. Says that with my AHI, the CPAP shouldn't be giving me a headache and to look into the mask issue a bit more instead. Fine, sure.
Issue now is that the clinic apparently only stocks AirFit N20s and P10s, and for everything else, I have to contact my DME provider directly. I've already contacted them and explained the issue, and am waiting for a call back. I also went ahead and ordered the Bleep "mask" online, the older version, to see if it really is a head gear issue. If nothing goes wrong with the shipping and customs, I should get it by the 16th!
In any case, my doctor's attitude right now shows that I most likely won't be able to get my CPAP settings adjusted until I am 100% sure that the head gear is not the issue, so I'm in for a bit of a wait. Maybe a bit less of one if my SPO2 tracker shows worrying results on the 6.2 pressure. It's frustrating, but even if my treatment isn't optimized how I'd like it to be, as long as it's not severely undertreated and I continue to see improvement, it's something I can put up with for the time being. I'll also start saving up for my own CPAP, because not being able to reverse changes to a previous prescribed pressure without going to the clinic, even after a phone call with the doctor, is ridiculous.
Sorry you are dealing with all these frustrations.
Unfortunately, it's all too common with sleep issues. The medical profession seems to be overwhelmingly unhelpful when it comes to improving sleep quality. They look at low AHI and consider the problem solved. AHI is just the tip of the iceberg, as you're learning first hand.
Work on the headgear comfort and try to evaluate honestly how you feel each day. It seems your current settings aren't ideal but likely better than no treatment at all so just control what you can for now.
Frustrating for sure.
*Brazen Reluctant cpap user just trying to offer support to others going through the same torture. Because, it's the only current solution and breathing is kinda important.
02-09-2023, 04:19 AM (This post was last modified: 02-09-2023, 04:20 AM by Riayain.)
RE: New to CPAP, wondering how well it's going
It is somewhat frustrating, but at the same time, I am still very grateful to even be able to get treatment and see some improvement right away. As well as get a titration study and have the prescribed pressure be even anywhere close to what might be my optimal number. I've read the horror stories.
Once I'm a lot more stable, I do plan to transfer to a doctor that allows online appointments, so these frustrations and this current doctor aren't forever. In time, I'll figure out the mask situation and maybe my aerophagia will improve (dialing it down to 6.2 has helped significantly, I don't get the chest pain anymore), allowing me to dial my pressure back up a bit more. I'm also on a diet (overseen by a registered dietician) to see if losing weight might help with the OSA since I am clinically obese, though just barely. We'll see.
Again, thank you all so much for the support and advice. I really appreciate it, even if I'm unable to implement a lot of the setting changes for reasons somewhat out of my control.
