Acclimation Problems, but I don't trust my doc

Sorry for the text wall, but I feel like there are some things being missed by doctors so I'm hoping for some help on here. EDIT: Tried to remove some length.

Background: Pretty sure I've had apnea since high school. I've had sleep anxiety and insomnia, have fallen asleep in school, behind the wheel, even in a job interview. I've gone to doctors with symptoms all that time (memory issues, exhaustion, GERDs, dysthymia, immuno issues), as they've increasingly worsened, but no one suggested a sleep study. I have a narrow Roman nose and tiny sinus passages as well as a deviated septum, which two ENTs have noted but said did not require surgery. I have trouble breathing through my nose regularly.

I started loudly snoring in the last five years, progressed to apneas waking me up, convulsing in my sleep, and lucid dreams/hallucinations without falling asleep. Issues worsened until their peak three months ago; my GERDs became internal bleeding and asphixisiating, I developed shortness of breath and apneas while awake; some days I just stop breathing if I don't concentrate on it. My coordination is off and I fall on the stairs sometimes. I've gained 40 lbs over four years (with 10 of those in the last three months) and my mindset... I was afraid I was dying since I wasn't breathing or sleeping and talked to my job about a sabbatical to find a medical solution. Top this with the worst sinus infection of my life and coughing to the point of vomiting and bruising a rib.

Diagnosis: ENT sent me to the sleep clinic that could get me in most quickly... They require a consultation, followed by a sleep study two weeks later... then a consultation three weeks later to get your results, then the tritration two weeks after that, followed by a consultation... they refuse to give results over the phone or to your ENT, so you're stuck waiting weeks. They kept telling me they'd send my results to "her," which is apparently their preferred DME, until I finally demanded my prescription because I am paying out of pocket.

The clinic is dirty- truly, my socks kept dragging dried mud clods from the floor into my bed and there is visible hair and dirt mopped six inches up the baseboards all around the room. I camp, so trust me when I say it's gross.

The doctor talks over me when I ask questions and refuses to acknowledge my CSA, even when over half my events are CA, with another quarter mixed. He only will discuss OSA with me and also won't discuss my facial shape and difficulty breathing. Just CPAP and continual "you don't even have that problem after you do CPAP." He seems to do little more than just hold these five minute consulations, he didn't provide me a sleep aid for my study (I demanded one for the titration), and complained to me about his sleep when I tried to explain how tired I am. He had no concern for my worsening condition the past three months.

The sleep clinician for the studies is worse. I showed up and wasn't on their books for the scheduled day. When I told him that I was scheduled, needed the study that day because my health was eroding, he laughed in my face and told me my apnea was only "an 11" and I wasn't going to die. I responded that I was aware I wasn't going to die at that moment, but that my health was impeded to the point I couldn't function and my husband was insistent I go to the hospital if they couldn't get me in (I'd fallen on the stairs while getting dressed for the study).

Clinician rolled his eyes, called his office manager and said, "some lady is in here saying she is dying and *eye roll* is going to go to the hospital if we don't get her in." They chatted about my willingness to pay out of pocket, then he told me there was luckily an opening that night and he'd let me have if it I would pay out of pocket if insurance failed.

I agreed, took my Ambien, and now I have a pressure setting of 8-14 according to this clinician. I bought my cpap online to avoid these people further and to cut out the wait. They wanted me to come in to order a machine, bring it to them for setting, then come back for another sleep study with it in a month, then ANOTHER consultation.

Current Issues: FINALLY the actual questions.

I have three major issues here in my first couple weeks:

1. I've tried three masks, a nasal during titration and two pillows, and they all are stifling. The air coming in is wet, somehow hot AND cold, and stale. I try not to breathe that sweet, fresh air through my mouth, but the pressure keeps popping my mouth open. I've tried turning off the humidity completely and it's still too humid. I have a slimline hose and we keep our house at 65.

2. The machine is making my bad cough worse. The pressure inflates my lungs for me and is hard to fight against. My chest is so muscle-sore and that bruised rips really hurts. When the cpap inflates my lungs, that sharp rib pain makes me cough all night long. I am not having events though, but I'm not really sleeping either.

3. Crazy aerophagia, painful enough to wake me and keep me awake. My stomach is so bloated, it's hard like I'm pregnant and I can't get my jeans waist around it. It doesn't go away until late in the day if at all. I feel bloated and sick after a small meal. I've tried sleeping with my neck/head completely straight to keep the air out of my stomach, but I'm here again in the middle of the night so uncomfortable I can't sleep. I've been taking probiotics to move things along faster, but this gas plus the rib has my torso in knots, I guess.

Any suggestions? I don't feel like I can return to this sleep doctor, the ENT isn't helping, and I feel tired and lost. I've been trying to CPAP every night until the pain is too much to take, just to get enough sleep to function. I'm worried this is making things worse! Thank you for sticking through my novel!

Welcome to the forum.

Read the Sticky for Newbies at the top of the Announcements section on the main forum page.

The aerophagia issues....let's start here...some maybe things you can do while we get this mess of your therapy sorted out.
wiki/index.php/Aerophagia

Get SleepyHead software and post a couple of recent typical nights detailed reports.
See this thread for format and how. We DON'T need or want all the graphs that you can see on SH.
viewtopic/t158560/How-to-post-images-for-review.html

Where are you located?
I think I got it that you are female....how old are you?
Did you ever get a copy of your sleep studies...at least the dictated results report?

I know you think that the machine is inflating your lungs....it's not...it can't. It's not strong enough with the air flow despite how it feels.
It can't even inflate a balloon at maximum pressure. What you are probably experiencing is just chest wall muscle soreness from exhaling against the pressure. It's fairly common and transient but there are some things which can be done to maybe help get over it.
It's like any new exercise routine....you work muscles that haven't been worked much before in a new manner and they get sore...with time they get used to the extra work and the soreness fades.

Let's start sorting through all your issues...and the first thing we need to see is that detailed report from SleepyHead.
It will show us your settings in terms of pressure and what the machine is doing.
Then we can decide on which issue to tackle first.

I'll add that I would forget about the clinic and any help from them or the Doctor. At least for a while. You might be surprised when you learn how many here have been sent for sleep studies and all that go with it by a Doctor....then that Doctor doesn't seem to know much at all about the equipment or how to use it.

Pay attention to the link Pugsy provided in her post. Study up on how to load and use Sleepyhead and to post results here. Study the aerophagia link.

I know nothing compared to many here. But I already know a couple things that you will be told to try by Pugsy. Get the information together and I think you will be pleasantly surprised at the confidence you will gain learning how to help yourself with the help of others here!

Thank you for the responses! We recently moved and I'm trying to find my laptop cord, so I will revisit this as soon as I can post my data.

Hi, sounds like you might be using the humidifier - not mandatory 'treatment' but an option - and possibly at a high setting, when you might not need it relative to local humidity... if so, turn it down (or off) for a couple of nights and see how you feel, then reinstate only if you feel the lack of it. If you're e.g. in Wash. state or NJ, you likely wouldn't need it as much or often as someone in Arizona, but everyone's diff. so experiment. It can cause congestion, coldy symptoms, etc. if too high (and make sure the machine's located at least a couple of inches below your head so water runs back to it instead of you).

welcome aboard!

speaking to the aerophagia, there is a setting on your machine that may help you out.

in the clinical menu, there is a "soft" setting. this is under the response menu where you have a choice between that and "standard". as soon as i chose "soft", my aerophagia disappeared!

you might try it and see if it works for you.

good luck!

To the OP:

The location in your profile is listed as USA. That's a rather large place, so you might want to be a little bit more specific.

Unless you live in remote area, there should be plenty of sleep clinics near you. Also, you can deal with a mail order DME if you don't have a good local one; especially if you're paying out of pocket.

Also, since you beleive that you have CSA, you should make sure that the sleep doctor who is treating you is a neurologist. AN ENT or pulmonologist lung doctor is great for treating OSA, but if CSA (or narcolepsy) is present you should be seeing a neurologist.