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Stressed and overwhelmed N00b - Where to start?
#1
Stressed and overwhelmed N00b - Where to start?
So, Obstructive Sleep Apnea.  My whole life.  Runs in the family.  Diagnosed 20+ years ago.  CPAP 6 years ago.  Out of compliance for last 3 years because I feel like I'm suffocating in my nose mask.  

I have issues with sleep doctors for some reason.  The first one fired me because I refused a second night in the hospital sleep center.  After the first night told me I probably needed a CPAP but I would have to spend another very expensive, very exhausting evening at the sleep center before he would approve CPAP use.  I had very young children at the time and getting away for one night had taken almost an act of congress to achieve.  I passed.  He fired me and threatened to have my drivers license taken.  That just P*ssed me off.  I walked.  

Fast forward to 2015.  New doctor.  Technology has changed.  No more sleep center.  Awesome.  Do the home test.  Yup.. it's just as bad as I figured.  Bring on the CPAP machine.  Unfortunately right about this time I also lost my job.. and my health insurance.. I bumped my follow up appointment because I couldn't afford it.  Doctor fired me.  But at least I had a CPAP machine now.  

I used it religiously for 3 years... (and no I have no idea what the settings were and the doctor wasn't interested in telling me.  I just ran it as the DME provider had it set.)  

Then I got a bad sinus infection and I couldn't use my CPAP as I felt like I was being suffocated.  Even after it was over...  I still couldn't wear my nose mask.  I've been a mouth breather my whole life.  I was only able to wear the nose mask at all because I'd had some sort of sinus surgery due to malformed drains.  But it felt like I was back at the beginning there.  I kept trying it... and kept tearing off the mask in panic.  

So I decide to try another sleep doctor.  I go in.  Talk about my experiences.  Tell her that all I really want is someone to prescribe me a full face mask and teach me how to set up my CPAP since I don't know how it works.  "Sure sure" she says.  I specifically tell her that I am a mouth breather... several times and that I want a full face mask.    

She sends me off to the DME.  Cool... on my way back to compliance... looking forward to some real sleep... 

DME says "Doctor specifically requested that you use a nose mask"... WTF?  WHY?  

She puts me in a nose mask.  When I complain that I can't breathe she adjusts it from 5 to 10, collects my money and pushes me out the door.  

So now.. I've got a new nose mask that I can't wear. It's way worse than my old one.  It literally feels like it's closing off my sinuses the second I put it on.  (Like it's too small)  and my CPAP makes whistling noises at the new power level.  Before it was super quiet... now I sound like Darth Vader.  Needless to say my husband and I are in separate rooms again.  I can't just go back to the DME unless I can afford to pay out of pocket apparently my insurance won't allow new equipment yet.  So much for taking a romantic vacation this summer.    

Why is the nasal mask the preferred?  What is it about a nasal mask that is so much better that a doctor would forbid a face mask?  

At this point I have gone through all three of the sleep doctors in this area.  I can try another doc further away but it will take months to get an appointment.   And how do I keep from ending up in this same spot?  I am so frustrated.  

I've read some of the info here.  And I think the sleep software is great and all.. but I'm at the point now where I can't even turn the machine on without anxiety.  I have noise issues... so the Darth Vader thing really freaks me out.  And I have so much going on right now that learning what I need to in order to understand the software etc is a bit overwhelming.  

How do I get a doctor to actually hear the words coming out of my mouth?  And secondly... since my sinuses have been a problem should I go to an ENT first?  

What would you do?
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#2
RE: Stressed and overwhelmed N00b - Where to start?
The first thing you need to do is use your old mask. There is no reason a nose mask is a better therapy. They are much smaller and most people prefer them to full face masks. BUT you wear what works for you.

2nd download OSCAR software from the top of the site IT IS TOTALY FREE. You will also need a SD card to put in your machine. (You did not say which dreamstation you have) hopefully it is one that allows data to be downloaded!

No one can give you any suggestions without seeing your OSCAR data.

Last look on YouTube for your machine and how to setup The clinicians menu. You can, and should download the manual for your machine - again FREE at the top of the site. It will also show how to make pressure changes on your machine.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#3
RE: Stressed and overwhelmed N00b - Where to start?
One more thing, the nose mask may work for you. It may be the pressure setting that makes you feel you do not have enough oxygen. Again, OSCAR will help identify if that may be a problem.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#4
RE: Stressed and overwhelmed N00b - Where to start?
Hey, I wrote the wiki article on masks.
Some of us, raising my hand, need more pressure than the doc's say. I need 10 so avoid that suffocating feeling. Comfort is important.
On masks I do suggest trying masks starting with pillow masks, then nasal masks and finally the full face masks. Why, because smaller mAsks cause fewer problems with leaks, vision, claustrophobia. But in the end the best mask for you is the one that works for you. Look at supplier#1 website and at full face masks. Look at the most popular masks and start there. Masks are popular simply because they work for people. Download OSCAR and we can help you, likely much more than you think, but you have to give us the data, if we don't say why we suggest something, just ask. We will give you a straight Answer.
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#5
RE: Stressed and overwhelmed N00b - Where to start?
Forget about the doctor for now. As recommended download OSCAR and then post some data on here and we can help see if settings should be adjusted.

You don't need a prescription for mask (maybe if you want insurance to cover it? but idk how that works for your case), buy whatever you want to use and try it out.

Resmed F20 mask is a lot quieter than most nasal masks due to their quietair elbow and it is one of the most commonly used full face masks. If you were going to try a FFM it would be my recommendation and is my preferred mask. They are a lot cheaper if you buy off amazon etc, shop around and might be worth to buy out of pocket to try one out.

The reason most doctors start with nasal masks is because they are smaller, less intrusive and nasal breathing is more effective if you are capable of breathing through your nose effectively. FFMs are usually only turned to when a patient has issues with mouth leaks or breathing.

Seeing an ENT about sinus issues is definitely worth doing but that will likely be a process that takes time with trying nasal sprays and then perhaps recommending surgery depending on what the issue is.
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#6
RE: Stressed and overwhelmed N00b - Where to start?
"What would you do?"

Don't give up. The therapy can, and will, work. You may (probably) need to direct your own therapy. And you'll be able to do it...   ;-)
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#7
RE: Stressed and overwhelmed N00b - Where to start?
In dealing with doctors, one thing I have found to be helpful is to bring in a printed list of what my problems/needs are. The benefit of this is written words are memorable than spoken words. When people speak to a doctor they are often disorganized in what they say and the doctor misses out on what is key to them.

For example in your last experience, a printed sheet stating

Reason for visit: need prescription for a full face mask

Details: after a severe nasal congestion, am unable to breathe through nose and nasal mask rendering XPAP unusable

So it's blunt and to the point, but clear. The doctor clearly knows what outcome you expect. And from a legal perspective, the doctor would be obliged to follow or explain why they can't.

In this situation it is moot because you don't need a prescription for a mask. But if you are experiencing problems with doctors doing unexpected things, this might help you. If you have a list of medical concerns, it helps ensure you don't forget anything, let's the doctor determine what order they want to tackle the issues, as well as see any possible connections in complaints.
Sleep-well
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#8
RE: Stressed and overwhelmed N00b - Where to start?
Hi!

As the others have said - download OSCAR and we can try to help you. Don't give up just yet. I tried another mask the other day (aside from my FFM) and whoo boy, that was a bad day. We're all different, and what works for one may not work for another, but we can at least try and get you feeling better now.


See my comparison of Viatom/Wellue and CMS50F oximeters here.

Not a doctor, definitely not your doctor, all advice is given as-is and represents simply my own understanding as a fellow patient and OSCAR user.
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#9
RE: Stressed and overwhelmed N00b - Where to start?
(05-31-2021, 02:31 PM)Geer1 Wrote: You don't need a prescription for mask (maybe if you want insurance to cover it? but idk how that works for your case), buy whatever you want to use and try it out.

Correction, A complete Mask is a Type 2 Medical device and as such requires a prescription in the US.  That said there are ways around it.  Buying a disassembled mask as parts is one of them.  And there are vendors selling whole masks anyway, BUT they are still type 2 medical devices and as such require a prescription for purchase.  I disagree with this but that is the way it is.
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#10
RE: Stressed and overwhelmed N00b - Where to start?
I didn't realize that, I am amazed the US is stricter then Canada for that.

Glad I don't have to do that up here, I tried 6 masks before I found the one I liked best...
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