I need some help getting started. SIBO/Sinus driven apneas, CPAP makes me feel like I'm suffocating.

Hi I'm Christopher! I'm new here...
So I've been working with my Osteopath, my functional medicine practitioner, nutritionist, GP/DO, and nutritionist because I have a very complex set of interconnected health conditions contributing to poor sleep and chronic pain/inflammation/anxiety. Basically I have deeply diseased sinuses that are chronically infected and inflamed because of SIBO and reactive issues with food I'm working hard to sort out. It's exacerbated by a lifetime of gut damage from undiagnosed and untreated celiac disease and multiple mystery food/carb/starch sensitivities. I am still working very hard to figure it all out. I am ASD, and very sensitive to weird sensations and smells, and BADLY triggered by the sinus symptoms and the feeling of suffocation in general. i also have a genetic disorder that impacts my body's ability to process b vitamins, deal with stress, heal injuries, clear infections, or detoxify, as well as a scoliosis and multiple related injuries causing chronic pain that impact sleep, and experience constant issues with the interplay between all of my conditions that make it very hard to sleep.

Lately I have been waking up gasping for air, and now that I have a partner, she confirms that I stop breathing at night. My sinuses slam shut with foods in a way that I can't figure out and I've had a sinus infection for the last twelve years. My ENT says I need endoscopic balloon sinuplasty but I can't get it until after I get the sibo and inflammation/infections under control, but that I need to treat the apneas now. I was looking into sleep apnea symptoms through all this, and considering I've had these sinus issues my whole life even after surgery in 2014, I am certain I have been experiencing these apneas for a long, long, LONG time. Maybe thirty years. So that's alarming, and you can bet I'm very eager for some relief.

My GP sent me to a sleep clinic for a study and I was really excited and tried very hard to sleep. but the bed was absolutely horrible and it exacerbated my injuries and pain so severely I left in tears and had to terminate the study. I called around but I couldn't find a sleep clinic that didn't have terrible beds. I'm very sensitive to different sleep surfaces and even with my 100lb medical mattress topper any inadequate sleeping surface is torturous and terrible. It was so awful. So I never actually saw a sleep doctor, my GP just sent me straight to Breathe Diagnostics. Really ratchet operation in a rough part of town. It was yucky. I couldn't find any other place to go for a study with adequate beds, so they ordered an at home test, which I could barely seep through and I'm pretty sure the device died in the middle of my second night. But from the results the DME supplier told me It turns out I'm not breathing at least six times an hour on the night of testing and I'm waking fully with nearly every apnea event. some nights it feels like way more, some it feels like none at all. I told the person at Kascade medical DME that basically my sinuses block up a lot and are at least always partially obstructed, so my mouth opens to breathe and my mouth dries out and I get apneas in the night, presumably because of the combination of throat irritation from my constant post nasal drip that no allergy treatment yet has helped and my dry sticky tongue falling back in my throat and suffocating me in the night.
Sonthey recommended a full face mask because it's likely that treatment thru my nose won't be effective at all.

So they sent me the autocpap resmed airsense10 autoset with the f20 mask four days ago and the company is bugging me about compliance already. I had a retreat this weekend where I didn't sleep at all anyway. But I've already been trying to learn about all the clinical settings. The issue is I feel like I'm suffocating in the mask and I can't fall asleep with the mask on. the company is sending me warnings about my noncompliance. it feels like even on the off chance I can tolerate the cpap at all, because I'm exhausted, I can almost get to the cusp of sleep and then my brain starts to freak and the pressure of exhaling against the incoming air feels totally smothering and suffocating. And it feels different every time I use it, like it's adjusting itself and never the same. Sometimes it's more comfortable, other times its literally blowing itself off my face or blowing my cheeks up like a balloon.

The auto ramp is turned on, I haven't tried it with the EPR setting turned on but I'm about to. I just played with the settings, which seemed to just be factory defaults and not set for me or my unique situation. I wish I had someone who could come to the house and help me. Their nearest office is 2 hours away thru brutal traffic and I can't drive that far.

Right now mode is on autoset, max pressure is 20, min is 4, mask set to full face (it arrived set to pillow which tells me that the unit wasn't even set up for my situation prior to shipping)
Response was set to standard but I want to see what soft would feel like.
I turned on autoramp, and set it to auto. Start pressure is default at four.
I turned on EPR, set it to full time, set the level to three, figuring maybe if I noticed a difference in my ability to tolerate I'd work backwards to tweak it from there.

Climate control I set to manual now but was on auto, blowing hot dry air into my nose when I first got it. My nose and throat dry out BAD in LA, and warm air makes me feel like I'm suffocating so I set it to 72 degrees and maxed out the humidity at eight.

So what do you guys think? I'm gonna try it this way but basically I'm really not tolerating this machine at all and I don't really have anyone to talk to about it or help me trouble shoot. If I can't comply with the therapy because it gives me panic attacks and feels like it's smothering me and I can't exhale freely, then it's just as bad as my apnea, which by the medical metric I guess is mild but piled on everything else I've got going on is very disruptive to my life.

I'm tired. I feel like I haven't slept in forever. And I really need a hug.

I just wanted to start this thread after reading some posts here and looking at the newbie guide.

I saw the link abour suffocation anxiety
https://www.mindpub.com/PanicAttacksinC ... pter4.html
but the website is formatted weird, I can't view it on my phone because the right quarter of the paragraph text is cut off by a big orange blob. So...yeah not helpful.

MaluFizzgig wrote: ↑

Sun Feb 23, 2020 7:45 pm

Hi I'm Christopher! I'm new here...

hello christopher and welcome to the zoo!

people with more to say will come by shortly. but i just want to mention that your minimum pressure is set too low. this is part of what makes you feel like you are suffocating. you aren't but your brain is telling you that you are. what you need to do is set that minimum to 7.

now there is going to be a lot more that you are going to have to do. you, yourself, not your doctor. you will want to take charge of your own therapy and make changes, such as i suggested above. in order to do that, you've got some reading to do.

see in my sig the link to the "newbie" thread. lots of good info there to get you going.

one of the things you'll need is the free software program called oscar. see the link for that in my sig as well. once you get oscar fired up, you'll be generating some charts of your sleep. you can post those, here, right here in this thread, so that others can look them over and give advice tailored to what they see in that data.

you can do this. you are going to make it. we can help you, but we need data to work with.

good luck!

Minimum 4 would suffocate a lab rat. Raise it to minimum 8 immediately.

And fwiw, even with the CPAP off, breathing through the mask is too restrictive for me. The holes in the holes to exhale through are like breathing through a coffee straw. I've got big strong lung capacity and even slow meditation breath I feel my breathing is very restricted even without the machine on.

It's hard for everyone to breathe only through the vent holes without the machine being on. I can do it but it's not much fun and it's an awful lot of work.

EPR doesn't even kick in with the 4 cm starting pressure you are using. The machine can't go below 4 cm anyway and for EPR to work it has to have somewhere to drop.

Set the minimum to 7 cm...EPR to 3....and see how it feels. Just try it while awake and under no pressure to sleep to see how it feels.
Don't know how to change that minimum...explained in the manual here
https://www.respshop.com/manuals/ResMed ... %20her.pdf

Thank you so much for the input. Even with min pressure set to seven and EPR to 3 I feel like I can't exhale completely or freely enough and start to get panicky. Now the mask feels like it's trying to push itself off of my face or blow my cheeks up like a balloon. This feels super weird!

Is there a better or more free exhaling mask/hose I might consider? Not sure how the data from that software will be of use when right now I can't tolerate wearing it for more than ten to twenty minutes with the machine on or off to fall asleep. I haven't slept with it on yet. At the cusp of sleep the sensation of suffocating from not being able to exhale freely or naturally is overwhelming and I have to take it off. I'm feeling really sensitive after so many nights of not sleeping. If I just lie here exhausted eventually will I just collapse and sleep through it and gradually get used to it? I'm sure a lot of new people probably don't realize that this is a big sensory adjustment. Seems especially true with ASD.

I'm not sure why other people have their apneas but I've not seen many younger people who are under weight dealing with this as a result of underlying sinus disease and gut stuff.

You'd be surprised at how many there are - a lot of obstruction in apnea comes from anatomical problems, small jaw narrowing airways, low palate, etc etc. The 'overweight old men' thing is old too and no longer bought into by most, but however bad your sinuses are, they are not the problem per se (however bad yours are) but the narrow airway to your throat is 'the' meaningful obstruction in apnea. And 'gut' stuff is not related, except that many do have acid reflux, though it tends to clear up on Cpap. Macro or probiotic issues may be coincidental, but that's all.

Getting used to the mask/pressure might be easier if you are not trying to sleep.
Run it while watching TV or reading.
You can satisfy your compliance this way, while getting comfortable with therapy.
It may be easier while you are distracted by tv or a book.
Many people do it this way.
No one will tell if you cannot sleep at first.
It will come, if you keep at it.
Hugs.