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CPAP THERAPY?
#1
So I am new to this, but even with being new you would think that I would get some direction from someone before starting all of this. I was sent to get my CPAP set up and then sent home. The lady that I picked the machine up from gave me basic instructions and that was it. From the 1st night,4/19/18,  I have had no luck sleeping with mask on the entire night. I have been having the feeling as if I was being suffocated. The unit I have is the Fisher & Paykel Icon auto w/ heated hose and humidifier. The mask I was using was Fisher & Paykel - full mask. The 1st mask I received was a medium and entirely to big. Spoke to the Rep. and she said because the mask was to big that was the reason for the feeling I was having. So I got a small. No difference in the suffocation feeling. I them went online and did my research. I then realized the the full mask was causing me to have claustrophobia. I ordered a Dreamwear Mask and used it for the 1st time last night. It was much better that the ones i had in the beginning. I thought that this one was going to work. About 2 hours into my sleep the suffocation / claustrophobia returned and ripped the mask off my face. So my question is No. 1 why was i not told about the pressure on the machine. I do not even know what my pressure is set at. I am assuming because it is an Auto model. Who do I need to talk to about this problem? At this point I will never be able to use this thing!! Thanks for any thoughts on a solution.
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#2
It sounds like you'll be OK before long, believe it or not.  Your start seems to be fairly typical of how things go these days with the sleepydocs and the DMEs.  Don't worry; you will be able to continue the therapy if you put your mind to it, refuse to give up, and say "I think I can, I think I can."  Nothing that you've been through so far is at all unusual, and in fact persevering from now on should turn out to be fairly trivial.  Just remind yourself, when necessary, that it's nothing like having a spinal tap done. You'll be getting good advice from a bunch of people here, soon, I predict.

Having a good, lightweight, low-impact mask is very important for starting out, and the Dreamwear is that.  Is your Dreamwear the "nasal" variety with cushion, or the gel-pillows kind?  (The nasal cushion doesn't have the two gel protrusions or protuberances; the gel-pil kind has those.)  And did they give you the full mask package, the plastic zip-lock bag from Philips, including the different sizes of silicone nosepiece?  You'll probably need to try all the sizes (at home, not at the DME's office!) to figure out which one is best for you.  That can be non-intuitive; you might assume that you need one size but actually another one is much better, more comfortable or less leaky.  That happens all the time.  So if they didn't give you those, it's a very good idea to call the DME and say that you want 'em.

Please update your profile with the mask make and exact model name, thanks.

Did they give you a user's guide for the Icon+ Auto?  You'll need that to check the pressure settings and stuff.  If you don't have one, you can get a PDF of it by doing a Google search using these terms (I can't post a link to the file here because it's on a commercial site and is from a distributor or retailer):

intitle:"icon novo premo auto user instructions" filetype:pdf

This doesn't matter in your case, but just for completeness (in case anyone else mentions it) there's an older manual for the older Icon (not Plus) available on this board:

F&P Icon Use and Care Manual.pdf

For more advanced things, including possibly changing the pressures eventually if that becomes necessary, you can get a "clinician's manual" for the device by using the link "CPAP Setup Manuals" at the top of the page here and following the directions.
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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#3
Please read this post by C0mbe in a thread here titled "Dreamwear nasal CPAP mask users": http://www.apneaboard.com/forums/Thread-...#pid196219

First, for use if you have the cushion rather than the gel-pils, there is a link to a PDF of the nasal cushion sizing guide. If you don't have the full mask package, then you don't have that guide. When you print it, be careful not to let the software do any scaling (zooming); you need to print the page at its exact size in the PDF.

Second, that post includes a scan of another sizing card that comes with the Dreamwear, showing how the Medium frame that's provided in the mask package fits a medium head (OK), a small head (not OK), and a large head (not OK). If your head is not medium, then you'll need to get from your DME either a small Dreamwear frame or a large one, and move the nosepiece and headgear to that frame. Otherwise you'll be uncomfortable wearing the mask and you won't be able to get it to fit right! I went through that too, and I had to get a size-L frame, after which the fit was very good.

Edited to add: The Dreamwear frame and headgear are the same whether you're using the cushion or the gel-pils, and regardless of which size of nosepiece you take. Therefore, you can easily switch back and forth between cushion and gel-pils to find out which one you prefer, not just switch sizes within each of the two types. If your DME won't provide the parts, you can buy them on Amazon (no prescription required) for around $20 each, which is expensive for what the thing is (just a chunk of made-in-China silicone) but not so bad when you consider that it's your nightly comfort that's at stake.
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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#4
Thanks for your response. It was very nice to hear such inspiring words. You made me smile. I called my doctor and he referred me to a new therapist. I am using the Dreamweaver full mask. I think I need to try the nasal pillows instead. I will update my profile. Thanks for pointing that out to me.
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#5
(05-24-2018, 09:33 AM)SMITHCK Wrote: So I am new to this, but even with being new you would think that I would get some direction from someone before starting all of this. I was sent to get my CPAP set up and then sent home. The lady that I picked the machine up from gave me basic instructions and that was it. From the 1st night,4/19/18,  I have had no luck sleeping with mask on the entire night. I have been having the feeling as if I was being suffocated. The unit I have is the Fisher & Paykel Icon auto w/ heated hose and humidifier. The mask I was using was Fisher & Paykel - full mask. The 1st mask I received was a medium and entirely to big. Spoke to the Rep. and she said because the mask was to big that was the reason for the feeling I was having. So I got a small. No difference in the suffocation feeling. I them went online and did my research. I then realized the the full mask was causing me to have claustrophobia. I ordered a Dreamwear Mask and used it for the 1st time last night. It was much better that the ones i had in the beginning. I thought that this one was going to work. About 2 hours into my sleep the suffocation / claustrophobia returned and ripped the mask off my face. So my question is No. 1 why was i not told about the pressure on the machine. I do not even know what my pressure is set at. I am assuming because it is an Auto model. Who do I need to talk to about this problem? At this point I will never be able to use this thing!! Thanks for any thoughts on a solution.
You say the first mask was entirely too big.  She agreed and.....wait....what?????  And when you both concur to try the smaller version you still think the mask is the problem when the discomfort and anxiety don't improve???????  Something is amiss here.

Your provider almost seems to be more of an impediment than an aid.  Even so, as you are beginning to realize, YOU are your own #1 Advocate in your health matters, and it is incumbent upon you to learn what matters in all forms of therapy or treatment to which you might expose yourself.  If she offers you nothing in the way of information it may be learned behavior.  As me great grandma used to quip at us in the kitchen, "Thems that ask don't get, thems that don't ask don't want."  Well, maybe in her kitchen, but not in my health care.  This person has learned that those who don't care to ask aren't interested enough to warrant her time and attempts to educate them.  She will undoubtedly respond to those who demonstrate that they want to understand the parameters of their treatment.  If not, she gets fired.  Period.

You state, "I am assuming this is an Auto model."  Why this assumption?  How should you find out....YOU!!   

"Who do I need to talk to about this problem?"  How about with your service provider?   Or how about with the physician who [correctly?] diagnosed you with a condition that needs some form of treatment....as yet unknown?

Welcome to the board.  Smile
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#6
(05-24-2018, 10:33 AM)SMITHCK Wrote: I am using the Dreamweaver full mask. I think I need to try the nasal pillows instead. I will update my profile. Thanks for pointing that out to me.

Oh, the Dreamwear full-face! I was forgetting about that one. Sorry, never mind my earlier mask stuff, except for the frame size, which is probably just as important with the FF.

Sure, try the nasal and/or the gel-pil kind if you need to; they're both pretty good. But I don't know of any reason offhand why the FF variety shouldn't be OK.

The only problem with the nasal-cushion kind is that some side-sleepers (including me) have had problems with leaks and needed to switch the nosepiece to gel-pils, which fixes that.
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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#7
(05-24-2018, 10:40 AM)mesenteria Wrote: You state, "I am assuming this is an Auto model."  Why this assumption?  How should you find out....YOU!!   

It was actually "I do not even know what my pressure is set at. I am assuming because it is an Auto model."

Two big questions for Ms. Smith are: Do you have a copy (printed and/or PDF) of your CPAP/APAP prescription from your sleepydoc, as you should have? If so, what pressure or range of pressures does it specify? Please also put those numbers in your profile, thanks.

If you don't have that paper or PDF, you should get it ASAP. You're entitled to it, and you're also entitled to a copy of the full medical record from your sleep study (one or two nights, however yours went), according to the Health Insurance Portability and Accountability Act. You could need those in future when dealing with other docs, other insurance providers, other DMEs. You'll also need a copy of the Rx page when you eventually order a mask or a machine online. (Think you won't need to? Sorry, but you're wrong. You might not need another machine, but you will want another mask of a different type sooner or later.)
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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#8
Aaah...my baaaaddd.  Misread that entirely, and thanks for the correction.
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#9
Thanks for the info. Thanks
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#10
(05-24-2018, 11:04 AM)SMITHCK Wrote: Thanks for the info.

You're welcome, and I'm sure other folks will be chiming in with further welcomes and moral support and practical advice and requests for your Sleepyhead charts. Smile

I know almost nothing about the Icon+, but from glancing at the PDF of the manual I see that it has an idling display that is switchable between time of day and pressure, so changing that to "pressure" would be a first step. Then you'll know what kind of air you're being fed, and you can compare that with your Rx and go from there.
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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