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Unable to breath feeling
#1
I am two weeks info my auto cpap machine with "pillow" nasal mask.  It starts at a 4 and ramps up, they recently made a change to a setting that when I exhaile it doesn't have as much output pressure.

I continue to feel that I can't breath on inhale and exhale (more so on this).  I wake up after 2-3 hours and take it off.  My chest hurts from trying to push the air out on the exhale.  They tell me to keep trying.

original AHI - 72
on machine - 7 to 23

Any suggestions?  I am thinking of throwing in the towel.
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#2
(06-01-2018, 12:24 PM)Rusty Scupper Wrote: I am two weeks info my auto cpap machine with "pillow" nasal mask.  It starts at a 4 and ramps up,

Ramps up to what? Please put all the details in your profile so we can see them in your sidebar, thanks. (Pressure, or pressure range, and exact machine model name in particular. Also mask model name.)

Also, when you say "ramp", is that really what you mean (that the ramp feature is switched on), or is ramp off but the low pressure is set to 4 and the machine wants to go higher?

One suggestion is to switch the ramp feature off. It doesn't really accomplish anything. You should simply get used to breathing through the mask at the prescribed pressure or range.

Another suggestion is that most likely the starting pressure of 4 is too low. With ramp off, does the machine still start at 4? You can check that not just empirically, but by looking at the settings on the screen. If you need a higher starting pressure, you will experience that can't-breathe feeling. It sounds like the doctor or tech or respiratory therapist who set up the machine for you didn't tailor the settings to your actual needs. Also, what pressure or range of pressures is specified in your prescription?

Edited to add: P.S.: Throwing in the towel would be a huge mistake. You're most of the way there. Why quit in the last hundred yards?
"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
(06-01-2018, 12:31 PM)Fats Drywaller Wrote:
(06-01-2018, 12:24 PM)Rusty Scupper Wrote: I am two weeks info my auto cpap machine with "pillow" nasal mask.  It starts at a 4 and ramps up,

Ramps up to what?  Please put all the details in your profile so we can see them in your sidebar, thanks.  (Pressure, or pressure range, and exact machine model name in particular.  Also mask model name.)

Also, when you say "ramp", is that really what you mean (that the ramp feature is switched on), or is ramp off but the low pressure is set to 4 and the machine wants to go higher?

One suggestion is to switch the ramp feature off.  It doesn't really accomplish anything.  You should simply get used to breathing through the mask at the prescribed pressure or range.

Another suggestion is that most likely the starting pressure of 4 is too low.  With ramp off, does the machine still start at 4?  You can check that not just empirically, but by looking at the settings on the screen.  If you need a higher starting pressure,  you will experience that can't-breathe feeling.  It sounds like the doctor or tech or respiratory therapist who set up the machine for you didn't tailor the settings to your actual needs.  Also, what pressure or range of pressures is specified in your prescription?

Edited to add:  P.S.:  Throwing in the towel would be a huge mistake.  You're most of the way there.  Why quit in the last hundred yards?
I reached out on this forum from work so I do not have the exact model in front of me.  I will add it when I can get to the machine.  Yes, the ramp feature is switched to on and starts at 4.  Dreammapper says that it goes to max pressure of 20 with a 90% pressure at 10.9.  I will see if I can change the ramp off, but some of the settings are locked (I can change humidification). 

As to your question on what my prescription is, no clue.  Did the home sleep study, got a call and they said that I was at 72 AHI and someone would be calling me right away.  Got a call two weeks later from the home health medical supplier and picked up the machine with a 30 min consult on how to use it.  Haven't seen a Dr. since he ordered the sleep study.

Why throw in the towel...cause it is like having a plastic bag over your head and the "professionals" say; "you have to keep on trying". 

Thanks for the suggestions.
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#4
(06-01-2018, 12:53 PM)Rusty Scupper Wrote: <snip>
As to your question on what my prescription is, no clue.  Did the home sleep study, got a call and they said that I was at 72 AHI and someone would be calling me right away.  Got a call two weeks later from the home health medical supplier and picked up the machine with a 30 min consult on how to use it.  Haven't seen a Dr. since he ordered the sleep study.

Why throw in the towel...cause it is like having a plastic bag over your head and the "professionals" say; "you have to keep on trying". 

Thanks for the suggestions.

Hi, Rusty Scupper, welcome to the forum (family)!

I'm sad to hear you have considered quitting, yet I can only imagine your suffering (far greater than mine was).  I've read some anecdotes of folks taking some time (months) to ever enjoy feelings of well-being from PAP therapy which makes my experience seem like a cake-walk. (Whatever that is Dont-know )  However, the success stories are awesome, and folks with some multiple, extreme afflictions have achieved that yearned-for feeling with the help of the many wise and generous folk here.

Please don't give up on your therapy — you have made a huge move already and as Fats Drywaller has suggested, if you provide more detail in your profile there are folk familiar with your machine who can provide helpful suggestions specific to that device.

It may seem like an impossible goal, yet those of us who have traveled the path you're on recognize how very close you are.
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#5
(06-01-2018, 01:13 PM)ShaunBlake Wrote: Please don't give up on your therapy — you have made a huge move already and as Fats Drywaller has suggested, if you provide more detail in your profile there are folk familiar with your machine who can provide helpful suggestions specific to that device.

Thanks ShawnBlake.  I might not get the details of the machine on here until monday.  I will stick with it some more.  Thanks for the support.
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#6
Rusty, hang around here for a while before (or even after) giving up. you will find much more detailed info and help here than most sleep clinics and dme providers offer. it takes some of us longer than others to adapt and to optimize the effectiveness of treatment with the machine. frankly, it's a royal pain, but necessary because apnea and sleep deprivation are really debilitating and harmful. there is a simple solution for most cases of feeling starved for air and that's to raise the minimum pressure, incrementally until problem solved. breathing may be made easier by capping the max pressure, if you're adequately treated with lower pressure. depending on machine types, other adjustments may be made as well. in the beginning stages of dealing with doctors and dme's and insurance you might not be able to take personal control yet so make sure you take your issues to these providers asap and lean on them until they help resolve your problems. by your description they are not working on your behalf. you do need to keep trying and you do need their help. do you have a 30 day compliance appointment coming up in a couple weeks? they probably want you to have a month under your belt before entertaining complaints but if you are to the point of giving up, don't wait to approach them. meanwhile, you can get a jump on things by responding as best you can to the suggestions already given regarding what additional info is needed for members to try and assist you. I, and I expect everyone else here, wish you luck and encourage you to persevere.
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#7
I don't know whether the ramp feature on the Dreamstation is in the user-level settings or whether you'd need to go into the "clinician mode".  There's a link at the top of the Apnea Board pages called "CPAP Setup Manuals", and you can use that to request a clinician's manual via e-mail (PDF) for your particular make & model of machine.  There's also a paragraph on that page explaining how to get into the secret (har har) settings, so to get started you don't need to wait for the e-mail transactions.  Also, if you weren't even given a user's manual for your machine to begin with, you should snarf a PDF of it from the Philips web site, for instance from: Dreamstation CPAP/APAP manual (PDF)

Of course it's frowned on (mainly by doctors) to change pressures on the machine without a good reason and/or without a doctor's approval, but sometimes ya gotta do whatcha gotta do.  In any case, the ramp thing is trivial; it has nothing to do with the therapeutic pressures or range thereof.  It's just a mickey-mouse feature that is better switched off.  Beyond that, the question is what is the appropriate pressure range for you, and it might not be 4 to 20.  It sounds like you should probably download Sleepyhead and start using it to graph the sleep data from the machine's SD card and figure out what's what.

The EPR feature, which Philips calls Flex, reduces the pressure by 1 to 3 cmH2O on exhalation. If you are having difficulty breathing out against the air flow, then probably you should try increasing that by 1 and see if you can live with the results. If not, then maybe increase it again. You said that Flex is on, but you didn't say what the setting is (and that should be added to your profile along with the pressure), so if it's at 1 and that's not good enough, try 2.

Another possibility, although I don't know how likely this is, is that the nasal-pillows nosepiece you're using is too small to let enough air through.  The complete retail package of any nasal-pillows or nasal-cushion mask includes at least two sizes, sometimes as many as four, of that silicone part, and it's important for the patient at home (not at the DME's office!) to try all of them and find out empirically which one is best.  So if you didn't get the full retail package of the mask, it would be a good idea to call the DME and request to be sent all of the leftover parts that you weren't given in the first place. Also, if the mask is a Dreamwear, be aware that there are three frame sizes and the retail package includes only the Medium; if you actually need a Small or a Large, then the mask will be uncomfortable no matter what. That's another detail that the DME should have taken care of. (This is why we need to see all of the actual product names in your sidebar.)

There are three things about fitting the pillows/cushion nosepiece.  First, it needs to be comfortable, which depends on a lot of things including the size of your nostrils.  Second, it needs to let enough air through (when the machine is pumping out at a reasonably high pressure) so that you're not getting any suffocating feeling.  Third, it needs to seal well against leaks.  The air leaks are evident when they happen; they're also reported by the machine as an average number of liters per minute.  Usually what works is to start with the largest nosepiece size provided and work down from there, trying each one in turn and looking for a good compromise among those three criteria.

OK, so that's just a start, and I hope that other folks will chime in with their own takes on your saga, because I'm probably overlooking some obvious things.
"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
Welcome
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#9
Wow, lots of replies already. Your Philips Auto CPAP will produce very detailed data that can be read by the free SleepyHead software. This software can provide us with more details than even your doctor is aware of, so we can help you get comfortable and effective treatment. Give us a bit of a chance, and we'll take a mile.

I suspect the "plastic bag over your head" feeling is a combination of the mask you are using, and non-optimized pressure settings. We can fix that. Download and install SleepyHead, read the links in my signature on Organizing and Posting charts, and let's fix this.
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#10
Thank you everyone.  You have provided more help/suggestions than the provider.  I won't be back on here until Monday.  I will have updated info.  Thanks!!!
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