Help! Couldn't use CPAP while congested. Couldn't breathe!

Elsh wrote: Thank you. Now I'm just a little nervous if it's completely safe to change pressure, or how I would explain to either my doctor or the sleep specialist WHY I changed pressure. I don't think they'd be very happy with me for going against doctor's orders..

A change from 4 to 5 is miniscule change and quite safe. Give it a try without trying to sleep.

Regarding doctor's orders.....Up to you.
I was prescribed 8 cm straight cpap. I ended up with apap 10 to 20 because 8 wasn't enough. I did it on my own. I worked with doctors for over 30 years and long ago lost the god attributes they like to be treated as.

Pugsy wrote:Regarding doctor's orders.....Up to you.
I was prescribed 8 cm straight cpap. I ended up with apap 10 to 20 because 8 wasn't enough. I did it on my own. I worked with doctors for over 30 years and long ago lost the god attributes they like to be treated as.

You still see a doctor, I assume? If so, what has your doctor's reaction been to you changing your own pressure... or do you just not tell them? I think I would have to tell mine since my data will be read.

Elsh wrote:

Pugsy wrote:If you go to bed congested to the point there is no air movement and you are suffocating, you either have to treat the congestion or use a full face mask so that you can breathe through your mouth.

Since I refuse to go down the full face mask road I choose to treat the nasal congestion. Oral decongestants, Flonase and/or Afrin in moderation.

I don't want to go with a full face mask, either. My doctor has now prescribed Flonase. I'm just not sure I'll have a choice down the road, because my allergies do get so bad at times.

WHY?
MOST people (from what I've read on this board) who use this therapy and use a nasal mask.......ALSO have a full face mask for their times of congestion.

I can't find where there's been a discussion of what your humidifier setting is.......
I would recommend turning the humidifier setting in the OPPOSITE direction of what you've been using. If you're using alot of humidity, turn it down or off. (even if you've been using some middle setting) Too much humidity can make nasal congestion worse.

Make sure you're doing nasal cleansing before bedtime and that you can breathe sufficiently before you mask up.


Den

Elsh wrote:

Pugsy wrote:Regarding doctor's orders.....Up to you.
I was prescribed 8 cm straight cpap. I ended up with apap 10 to 20 because 8 wasn't enough. I did it on my own. I worked with doctors for over 30 years and long ago lost the god attributes they like to be treated as.

You still see a doctor, I assume? If so, what has your doctor's reaction been to you changing your own pressure... or do you just not tell them? I think I would have to tell mine since my data will be read.

What "data"? Your profile shows you have an "Escape" model. There is NO data that it reports.......only hours used.

This is YOUR therapy......not your doctor's. You're the one who sleeps with the machine at night.


Den

Elsh wrote: You still see a doctor, I assume? If so, what has your doctor's reaction been to you changing your own pressure... or do you just not tell them? I think I would have to tell mine since my data will be read.

Remember I worked with doctors and I know full well that some are control freaks and when I have encountered them and they were unwilling to listen to my input on my own condition or even hinted at treating me like I was stupid..they didn't get to have me as a repeat patient.

I saw my "sleep doctor" all of 15 seconds when he came in during history discussion I was having with his PA.
He looked in my throat and nose. That was it. April 2009. Sleep study ordered.

Saw his PA in August 2009. Brought along my reports to verify the reasoning behind the changes I made. She was cool with it. Said I did exactly what she would have suggested. Said it certainly appeared I had a good handle on things, come back in a year or so.. which I have not done. There is no need at this point.

I do have a PCP but by his own admission I understand OSA better than he does.

From my experience doctors are quite good at the diagnosis part but sorely lacking in practical experience with the basic problems associated with the use of the mask and machine unless they happen to have OSA themselves.
They think that a titrated pressure success in the lab means a perfect solution out in the real world but sadly it doesn't. I am worse in REM sleep. 53 AHI in REM.... in Non REM barely diagnostic at 11 AHI I think it was.
I had a whole night for the titration study. Disaster. Slept 156 minutes and of those minutes maybe 10 in REM..
Duh.. doesn't take a lot to figure out that there was very little time spent titrating me when I was at my worst.
Not a huge surprise they didn't get it right.

As you become more educated about this whole process you will become more comfortable making decisions or adjustments based on well thought out ideas.
Your doctors refusal to make a slight pressure increase when you are complaining of suffocation speaks volumes about his lack of practical experience and the simple fact that he is unwilling to listen to you.
I would be telling him to kiss my butt goodbye.. but that is me. I don't bow down to them..I have seen first hand that most are buttheads... the really good doctors will listen to what a person has to say.

OK off soapbox..one handed novels hurt.

Elsh wrote:

Pugsy wrote:Regarding doctor's orders.....Up to you.
I was prescribed 8 cm straight cpap. I ended up with apap 10 to 20 because 8 wasn't enough. I did it on my own. I worked with doctors for over 30 years and long ago lost the god attributes they like to be treated as.

You still see a doctor, I assume? If so, what has your doctor's reaction been to you changing your own pressure... or do you just not tell them? I think I would have to tell mine since my data will be read.

I don't see a doctor - I was told to look at my data and manage it myself if I wanted to - by my pulmonologist. This is YOUR therapy, not theirs. Until recently my 80 year old mother tested her own blood and gave herself insulin shots based on the readings and You are afraid of AIR? If you had diabetes would you run to the doctor 3 times a day to decide on how much insulin to shoot up? Insulin or the lack can kill you, 4 -20 cm of pressure in cpap might give you a stomach ache. Get of the pot and do what needs to be done.

Wulfman... wrote: What "data"? Your profile shows you have an "Escape" model. There is NO data that it reports.......only hours used.

This is YOUR therapy......not your doctor's. You're the one who sleeps with the machine at night.


Den

I am switching to the Elite shortly.

One other comment.

4 cm pressure could very well be sufficient to maintain an open airway. You have no way to verify that part of the therapy until you get the Escape swapped out for at least the S9 Elite which I understand you are working on.

4 cm of pressure could also be adequate for some people to breathe quite comfortably. If it is not comfortable (and most people here will say they need more air movement to be comfortable) then you must decide for yourself how you wish to handle it.

I used my APAP to screen my sister and her husband for OSA. I tried using 4 cm and it took my sister all of 30 seconds to tell me she was suffocating. Same thing with her husband. Once I changed it to 5 cm they were comfortable.

Elsh wrote:Thank you. Now I'm just a little nervous if it's completely safe to change pressure, or how I would explain to either my doctor or the sleep specialist WHY I changed pressure. I don't think they'd be very happy with me for going against doctor's orders..

So let them be unhappy. You're not very happy not being able to breathe at night. Fix your therapy. If they have a problem with it, they'll get over it. If they don't get over it, get better doctors.

As Pugsy said, this is YOUR therapy. This your BREATH we're talking about here. It's perfectly reasonable for you to take charge of that.

I seriously doubt any knowledgeable doctor would worry about an adult using 7 cm of water.

As for safety, the maximum pressure on most machines, 20 cm, won't do any harm to your lungs unless you have emphysema or something. It is possible to cause central apneas if you turn your pressure up too high, but that's very unlikely to happen in the single digits, and you would start breathing again long before you were in danger. I'm told it's actually much rarer than most people think even at higher pressures, but if you did cause pressure induced centrals, all you'd do is ruin your sleep. You'd feel lousy the next day, realize you goofed and turn the pressure back down.

Here's a study where a group of CPAP newbies were sent home to titrate themselves. They were given a starting point based a mathematical formula, and encouraged to adjust their pressures as needed. This was back when the machines were much more basic, so they wouldn't have had APAP to do the work for them or even flow data to look at. It was a small study, but the DIY group did just as a well as the group titrated in a sleep lab. More importantly, do you think the researchers would have even attempted that study if it were dangerous to change your own pressure?
http://www.ncbi.nlm.nih.gov/pubmed/12598214

I would definitely try to get a machine that logs flow and pressure data, though. In the S9 family, that's Elite or Autoset (not Escape anything). If you can get the Autoset, you may find that APAP is helpful with your congestion. It will automatically give you more pressure when you're congested, and less when you're not.