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New mild apnea CPAP user - terriergal - 09-17-2018
I am new here - I'm 48, I was diagnosed with mild apnea after a sleep test in June. I'm exhausted most of the time. I just started with my CPAP in July and it's Ok to sleep with now, the nose pillows by ResMed are the best for me at the moment. I added a chin strap which I suppose helps a bit. I am glad that my adenoids aren't irritated every morning from snoring.
HOWEVER. I don't know even how to contact the physician that set up my machine, they keep giving me the runaround. My doctor tells me to contact the place where I got the machine, the machine place can only exchange masks for me and gives some tips and tells me to contact my doctor. Neither one seems able to answer how I contact the physician in another state that read the sleep test and prescribed/set up the CPAP. Neither one seems to have heard about my particular problem of long palate closing on exhalation but I have seen several posts on here indicating I'm not the only one. It's kinda pissing me off.
[I'm rapidly losing faith in my local clinic/hospital system, it's a smallish city, some things were missed on a cervical MRI a couple years ago that probably shouldn't have been also. I'm starting to think about driving to one about 20 miles away for my regular care where they get more specialists in from the larger cities, and just seem to be more on the ball in general.]
So anyway it helps somewhat to use the CPAP but I still can't sleep on my back, because my palate is long (says the ENT, and kinda blew it off as no big deal). I suffer from being unable to exhale through my nose during dental work as well as sleeping on my back so i feel like I'm suffocating when I go to the dentist (they try to help me with that but they have to keep stopping so i can get a few catch breaths). When I try to talk while reclined my nose is completely blocked off like I have a terrible head cold. If I answer the phone like that everyone asks If i have a cold.
While sleeping on my back I can exhale ONLY if I crank my head way over to the side and chin "up" head "back" while turned to the side. But not if facing straight forward or slightly angled to either side. I can also sleep face down (actually chin on the mattress with neck extended) but obviously can't do that very well with the mask on, and I also have to make sure my head is propped just exactly so that I'm not breathing into my neck pillow or the mattress.
My body wants to sleep on my back a lot of the time, because I have neck arthritis and shoulder pain issues that make it hard to sleep too long on my side or with my head cranked over to the side. I need to be able to adjust because of pain. But I can't adjust to all positions because of the palate issue.
I don't know how to look at my machine's pressures and also not sure how that would help, since it is my exhalation pressure that is closing the palate, the only thing that relieves it is opening my mouth to exhale, which wakes me up, if the suffocation sensation doesn't do it first.
What I don't get is why I get such high scores on MyAir when I'd been having mask leakage problems (because of this) and still have 3 events per hour and I'm still tired.
RE: New mild apnea CPAP user - Melman - 09-17-2018
Welcome to the forum. Your experience of not getting meaningful help from your doctor or CPAP supplier is not unusual. With more data we can help you get your machine adjusted. Go to this link for instructions forhow to enter the clinician's settings to make adjustments to your machine. https://www.apneaboard.com/resmed-airsense-10-aircurve-10-setup-info You will also see a link for downloading the clinician's manual. You should also download and install free Sleephead software and post data in ghe forum so we can advise you. The formatting of he data is important. Please see the links below. Your machine has a feature called EPR which reduces the pressure when you exhale.
RE: New mild apnea CPAP user - Sleeprider - 09-17-2018
Terriergal, welcome to the forum. If you have a PC or Mac download the #Sleepyhead software. Check your Autoset for her and check if there is a SD card behind the door on the upper left side. If you have it, then you can really help us to help you. If not, any SD card from 8 to 32 GB will work. Posting your data using the instructions for organizing your data and posting an attachment (see my signature links) will let us see your settings and quickly identify what you need.
RE: New mild apnea CPAP user - srlevine1 - 09-18-2018
Welcome to the forum. I am going to give you some "magic words" that usually work in focusing a physician's attention. They are "abandonment of care" and that is the last thing a physician want to hear, especially if you file a complaint with the state medical board. Another course of action is to speak with your insurance company and ask for their assistance. One call from an insurer sometimes works wonders as they are the ones paying most of the freight.
Might I suggest you download #SleepyHead software, install it and learn to use it. By posting your data, forum members can provide specific suggestions based on their experience. Many of our members can give you detailed instructions how to enter the "clinician mode" and change your own settings based upon the data you provide.
Look at the black bar at the top of the page and you can find a "CPAP Setup Manuals" menu item to assist you to download the correct manual to help you change your settings. Follow the instructions for the ResMed A10 (with pictures) link. But, you need a starting point so you may wish to load the software before making any changes to the settings.
Stick with it. Getting the right mast, settings, and acclimating yourself takes time. It is a journey and the key is to view it as a continuing process. Do not give up.
Best of luck. A better sleep tonight makes for a better tomorrow.
RE: New mild apnea CPAP user - OneSnorer - 09-18-2018
I can't help with C-PAP as I am new at it, but I would certainly drive the extra 20+ miles for good care
I was doing it the other way around, getting routine injections at a facility close to home, to avoid a extra 90 miles round trip, and gave that up as that facility was just running into all sorts of annoyances.
RE: New mild apnea CPAP user - Zandor435 - 09-19-2018
I am 1-2 years on my CPAP and don't have anything specific to offer, but I did want to comment and share that this board is a wealth of good information.
My first 6 months on my CPAP were actually worse than before i was treated. I have learned that I am sensitive to certain features of certain machines. after about 9 months or so i finally got on the right machine and have things tweaked. I have been very good for the past 6 months or so.
I share this just to encourage you to stick with it and educate yourself through this board and talking w/ doctors you trust. I also had to work to find the right doctor. I agree w/ the above poster that driving further is the way to go if you can get better care.
One last thing. I was surprised to find a lot of after market sleep stuff that has really helped me w/ my issues. There are things I wasn't even area of before people mentioned here. Posters here have been super helpful.
I hope your issues get better and that you are able to find some good care on here or w/ a physician. And welcome to the board
RE: New mild apnea CPAP user - terriergal - 11-08-2018
Thanks all- my machine is an auto set so I can’t make any adjustments. I know my husband is the software guru. So I’ll try to get him to answer here.
I saw an ENT yesterday and he would be willing to try the pillar procedure for me. And also turbinate reduction. Which would be covered (I know pillar is not). But can’t guarantee it would work. However he says my sleep test results seem to indicate I would be a good candidate. He seemed to think it’s normal for my palate to close and also seems to think I have tons of room in the back of my throat. Well yes, I said, when I’m awake I can make LOTS of room because I’m a singer. But all that tissue collapses when I relax.
However the ENT of course says I shouldn’t sleep on my back, but even on my side this happens. I have to be on my stomach for it to work, and In that case I might as well not wear it.
In fact I managed to sleep on my stomach almost all night last week, my chin balanced on my neck roll, and I woke actually feeling refreshed for a change. Next night I could not do it. It also hurts my chin tissue and lips and teeth from the pressure.
I got some minimal amount of I don’t know what kind of sleep from about midnight to 3am. Then nasal pillows kept leaking. I wrestled for an hour with Leaks and also every time I started to drift off I woke having to open my palate. After an hour of this I was wide awake and gave up trying to sleep at all.
It is a new mask with the hose coming off the top of my head and it doesn’t work as well as the air fit p10 even though that one annoys me with the low mount hose. Will be returning ASAP.
I also had to make my own chin strap which works quite a bit better than any commercial ones but still gives me a headache because it has to be so snug.
And my doc when I asked her where I should go for more sleep or apnea surgery questions basically told me to do my own research because she doesn’t know.
!!!
RE: New mild apnea CPAP user - Fats Drywaller - 11-08-2018
(11-08-2018, 07:44 AM)terriergal Wrote: my machine is an auto set so I can’t make any adjustments.
Sure you can! Hold down the Home button and the knob together for a few seconds to get into "Clinical mode" or "Clinician mode", whatever it's called. For more, use the "CPAP Setup Manuals" link at the top of this web page, and request the clinician's manual for the Resmed Airsense 10 Autoset for Her (follow the directions on that page; scroll down to the section about requesting manuals by e-mail).
(11-08-2018, 07:44 AM)terriergal Wrote: And my doc when I asked her where I should go for more sleep or apnea surgery questions basically told me to do my own research because she doesn’t know.
Apnea Board is the place. Now you know better than she does.
RE: New mild apnea CPAP user - terriergal - 11-08-2018
(11-08-2018, 07:44 AM)terriergal Wrote: Thanks all- my machine is an auto set so I can’t make any adjustments.
I should clarify - this is what my GP told me. I shouldn’t need to make any adjustments because it adjusts constantly itself.
:-/
RE: New mild apnea CPAP user - terriergal - 11-08-2018
Oh one more thing. As it is with everything on the settings created by the unknown sleep doctor, the machine forces air down my esophagus. I wake with a stomach and esophagus full of air.