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New to CPAP, wondering how well it's going
#61
RE: New to CPAP, wondering how well it's going
Well first, congratulations on firing your sleep doctor! His most recent behavior is truly unacceptable. I wonder whether he has special trouble working with patients who are women. At any rate, you are well rid of him.

I think your minimum should come up, partly to see whether you can reduce the number of OAs even further, and partly for the sake of having a steady level of EPR throughout the night. With EPR of 2, that would mean a minimum of 6. If you go up to EPR of 3, then a minimum of 7.

Have you asked at the new clinic whether it's true that you'd lose insurance coverage for your machine if you changed the settings yourself?

I hope a different pillow will help with the aerophagia, and I'm glad the neck pain is abating.
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#62
RE: New to CPAP, wondering how well it's going
Good morning.

I slept approximately 5.5 hours last night, woke up, and my first movement made a large cracking sound, haha. I think I laid there stiff as a board all night! This new pillow probably isn't for me and I have to find another one, but indeed not having my head sort of tilted back all night with the contour of my Tempurpedic neck pillow seems to have helped my aerophagia a bit, though I still have it. Ripped out a large one as soon as I got up. It also seems to have helped my lightheadedness a bit, which on second thought probably isn't all that surprising.

I completely forgot to ask if adjusting my settings myself would make me lose my insurance coverage! I'll call to see about that and possibly trying an EPR of 3 tonight to see if I can help my aerophagia a little more. Raising my minimum might have to wait until my next actual doctor appointment, which I'm fine with for the time being since my new settings do make me feel good, it's just the aerophagia.

It's so nice to be able to wake up and get up right away again!
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#63
RE: New to CPAP, wondering how well it's going
Hello. It's been three days since my last post.

I called up my doctor that day and didn't manage to ask if changing the settings myself would make me lose my insurance coverage... I'll write it down for next time, but long story short, I was told to give the settings a week and if I was still getting aerophagia, I could dial the EPR to 3.

Well, I don't know if they're lucky or if the pillow made that much of a difference, but I have been noticing a decrease in aerophagia by the day since switching pillows. I still haven't found the right one, even have a Coop Home Goods pillow on the way because I can't find a suitable equivalent in Japan and I dislike the other varieties I've tried, but the pillow experiment seems to be a success.

Unfortunately, I'm still getting headaches, some lightheadedness, and pain under my ear and along my jaw. I thought my teeth grinding had stopped since I started using the CPAP, but I'm beginning to think my teeth clenching hasn't. Could be entirely psychological, maybe my pressure isn't yet super optimal and so my body's still a bit stressed - who knows. But I went to the dentist today, got told that I should've visited months ago because there indeed is a lot of tightness and tension around my jaw, had some sort of electric treatment, and got teeth impressions taken for a night guard which I'll be picking up next week.

It'll take some time to see if the bruxism is indeed the issue, but a great reminder that even if sleep apnea is the main reason for my bruxism, it takes a while to see the CPAP's full effect...
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#64
RE: New to CPAP, wondering how well it's going
Glad to hear the pillow experiment worked, and you were smart to go to the dentist. Here's hoping your other symptoms will be abating soon.
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#65
RE: New to CPAP, wondering how well it's going
Hello! It's been another two weeks, so I'm making an update.

First, regarding my aerophagia. I am happy to report that it is mostly gone! When I wake up, I do not feel the need to burp endlessly anymore, and the chest and stomach pain has mostly subsided. This could be because I allowed myself more time to get used to everything, or it could be the pillow. I finally settled on the Coop Home Goods pillow, and after a few nights of getting used to it, I now sleep and stay on my back all night long. I still use the Dreamwear under-the-nose mask and my leaks are very low most of the time now. Even my flow limits are under 0.1 95% of the time.

As for my headaches, lightheadedness, and pain, my dentist gave me a night guard which stopped headaches first thing in the morning, but I still had them throughout the day. After some more research, I discovered all three symptoms were actually due to TMD (temporomandibular disorder), which is apparently also fairly common with those who have apnea. I managed to see a specialist just a few days ago, of which there are only 300 in Japan, and they confirmed that I indeed had the disorder and it most likely stemmed from a mixture of terrible posture, poor oral posture (minor but constant clenching of the lower jaw), and the night bruxism brought about by the apnea. As mine is entirely muscular and there's nothing wrong with my bones or joints, on top of a temporary day splint to teach my body and brain what a relaxed jaw should be like, I am now practicing proper oral rest posture and nose breathing, which are two exercises those with apnea are recommended to practice anyway.

My next doctor appointment for the apnea is in a few more weeks, and I plan to ask if I can have a higher minimum, at least 5, because my pressure is almost never anywhere near 4 throughout the night.

I am still in pain and not entirely back to normal, but these are all small steps towards a future healthy me. Smile
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#66
RE: New to CPAP, wondering how well it's going
While I'm sorry you're still experiencing pain, this is over all a very positive update! I hope the pain will ease as you take the recommended steps to deal with your TMD. And yes, by all means request an increase in your minimum pressure! I can't recall: did you ever definitively establish what the consequences would be if you revised your settings yourself?
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#67
RE: New to CPAP, wondering how well it's going
Hello, no, I did not. I plan on bringing that up in my next appointment. But knowing Japan and how dumb its insurance can be, it most likely would be an issue unless my doctor was very casual with it.
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#68
RE: New to CPAP, wondering how well it's going
Hello, it's been over a month since I last posted and I thought I'd make another update.

I have continued to use the Coop Home Goods pillow and Dreamwear under-the-nose mask. While some nights (typically the nights I sleep late) result in a higher leak rate and AHI, for the most part, my AHI has been around 2.5 and my leak rate is low. My aerophagia has mostly disappeared, I've managed to reduce some of the stomach medication I've been taking, and it's a lot easier to stay awake and focused compared to January. Hurrah!

The downside is I still have headaches, pain and stiffness around my neck and shoulders, and lightheadedness. It turns out my TMJ disorder is secondary to something else going on with me. An MRI and x-ray showed some cervical kyphosis and rounded shoulders, and I was sent off to a physical therapist to see if fixing these two issues might help. I have now been in physical therapy for 6 weeks, with strength training added in just 3 weeks ago, and prognosis is currently set a year from now.

A few days ago, I had an appointment with my sleep apnea doctor and we're increasing my pressure from 4-7 to 4-10, as I spend a lot of time in my sleep hitting the maximum and I still seem to get extreme sleepy spells in the noon. When I told them about the above, they remarked that I might not be seeing much improvement because my sleep apnea treatment isn't optimized just quite yet. We'll see if switching to 4-10 makes any difference.
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#69
RE: New to CPAP, wondering how well it's going
It's good to hear things are going better for you in these ways. I'm curious: did you ask whether your minimum could be increased, and did you ask whether you can adjust your pressures yourself? I hope the physical therapy will start yielding good results soon, though it sounds as though you may need to be patient. At least you now know what the underlying problem is!
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#70
RE: New to CPAP, wondering how well it's going
Hi Dormeo, thanks for checking up as always.

I asked if my minimum pressure could be raised, and they said they wanted to do things one at a time and since the range isn't very big, they prefer just keeping it at 4 for the time being. Based on future results, I'll see if I can't convince them yet.

Which brings me to the second bit, it indeed seems I can't adjust the pressures myself without it voiding insurance. But again, I probably won't get a 100% factual answer unless I somehow manage to wrangle my insurance company into answering me, and they seem to really lack that kind of knowledge and I'm not sure where to start with that. (I sneakily did change up the EPR because when they programmed the 4-10 range in, they changed my EPR back down to 1 and I was just like, nope, we ain't having it, we did not discuss changing my EPR! So, we'll see if they say anything...!)
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