[Pressure] Danger Involved - Changing your own CPAP pressures

[thefotochef]

Hi new to the board but I'm glad I found it. I have been on CPAP/BiPAP since 1990. firdt tried it in 1985 for a year and hated it and went through UPPP operation it worked great for 4 years. When my apnea returned it was twice as bad as it was at first going from 8cc to 15cc of pressure. My most recent test raised me to 22cc but there seems to be a reluctance to go above 20cc pressure which is fine and seems to work well for me. I have a REMstar M series BiPAP machine, set at 22i 18e but it got wet and now is not working properly. I went onto freecycle to see if anyone out there had a machine available and found one but the pressure was only at 15cc Thru this site I was able to find a manual that shows me how to increase the pressure to make my sleep more comfortable and not keep my new wife awake(married 19months ago today).

[zonk]

How long since you had a sleep study
welcome to the forum

[Shastzi]

Nice flame war guys!
From where I come from, Chip and ClockPuncher are what we call "Trolls"
They come in to a new invironment where folks are trying to help each other
and try to bash others there because they are too insecure about their
own significance to feel good about themselves any other way.

I'd say their talents are better served selling used cars because that
industry can always use more BS!

Take the hint: you could work on your chairside manners.
To me, Chip, ClockPuncher are just frauds attempting to scare everyone
into handing over their wallets.

I find I must stand with the other patients who are diabetic and must
get the insulin right or bad things happen.
I am not diabetic (yet that I know of) but we are talking about getting
the oxygen dialed in right (in the form of air pressure) or other bad
things happen.

This attitude of keeping the patient ignorant and therefore helplessly dependent on
the AIR GODS in their ivory towers is nothing but blatent hubris and greed.
(Don't have $16,000 for all the required Holy Sleep Studies? Sorry kid.
Thou hast been dealt Tough Noogies.)

Oooh! Mustn't touch the pressure or you might induce..*gasp* CENTRAL APNEA!!
Has anyone really died from doing this yet?
I am open for information. I want to see the coroner's report:
"The poor slob died from Central Apnea brought on by..*wince* increasing his CPAP Pressure by
1cm of H2O!!"
If you are having centrals you most likely have other neurological issues that need checking into.
(why is the brain not hitting the "breathe STUPID!!" switch on time?)

Well now, I may have been born at night, but not last night.
We have folks out there with Auto/Servo machines that run their pressures all up and down the
spectrum all night as administered by a robot with half the brains of a lady bug.
(yes it is true. I am not making it up. I program devices like that, so I know how smart they are.)
At this point let us look at this from a ligation standpoint: Knowing that *SOME* people will
change their pressure, I can bet with enough confidence the machine is incapable of doing any real direct harm to anyone.
You might make yourself real uncomfortable though.
I refer you to the quote from the insurance co. manager:
"The only thing you COULD do is pull it down on your head while you're asleep"
I wont test that scenario though.

I run a plain CPAP. No brains it just blows air. It needs my brain to set it properly and change that pressure
when I notice other variables change.
When it breaks down I'll go in again to the Doc and get a fresh prescript. No big deal.

So I leave you with this:
What happened to "First Do No Harm"?
If I had waited 4 months for an appointment for a sleep study I'd likely either be dead or vegitative by now.
Through inaction I decided my risk was higher, so I got my old machine out of mothballs and armed myself with knowledge and
did something about it.

I am not "down" on doctors. They are something society needs.
But will not suffer fools gladly either.

To all of you out there: Peace, Love, Carrots and may your nap times always be apnea free!

[Ugly]

I am a Respiratory Therapist who works in the home care field. Prior to working here I worked in a sleep disorder lab. When I stumbled across this site I was shocked.

Of course reading what you will on the internet does not mean you can understand the situation others are going through. If everything is going well for a person then there's no need to change things. You know, if it ain't broke, don't fix it.

The law of common sense would tell you not to manipulate the pressures when you are completely unaware of the consequences.

I for one have been made aware of potential consequences. The website has disclaimers everywhere. And some of us really aren't as dumb as we look.

The pressures are set by the Physician to the optimum level to alleviate the apneic events.

I would strongly suggest any person who feels they do not get enough relief from their CPAP unit to consult their physician or homecare provider.

Some of us are in tough positions. For me, after finding my CPAP of 14 years was no longer effective, I reached out. My doctor arranged a sleep study, but I couldn't see him directly. I had symptoms during the sleep study that apparently went by totally ignored. That is so frustrating. When there are obvious problems and the "experts" still ignore you, then it's time to take matters into your own hands.
Alas, I increased the pressure to what was revealed as standard by a borrowed unit, it just wasn't the same. An APAP that set itself as needed was one thing. My personal machine with a "static" setting that could only be changed manually offered disappointing results.
Both at a modified setting and at the prescribed. I am back at the prescribed setting. It is leaving me SO TIRED that I'm in bed from about 11 PM until 3 PM the following afternoon. Yes I wake up, often in late morning but I'm so exhausted I go back to sleep. This from using a setting prescribed by my doctor. Sorry, the doctors are only human and it seems mine is proving himself fallible. My respiratory therapist has heard my troubles. She has seen the data spewed from the APAP and was impressed that my record keeping was pretty accurate. It proved to her that the prescribed setting was inadequate. Finally! Someone listened to me. She faxed the information to the doctor but I have no idea when he'll get back to me. I'm really on my own in all of this. I can NOT just turn to my doctor. Some of us have to take matters into our own hands.
Some suggest altering the pressure in smaller increments. I will do that. Eventually. But most of all: I am responsible for my actions.
Apnea Board has been an immense help, but in the end, the liability is all mine. Here they offer a service and if you don't like what they have to offer, I guess all that's left is -- don't read it.
-Sean

[Ugly]

LOL boy I must be tired. Took me a moment to figure, what's wrong with this picture?

[Ugly]

And not all DMEs will change pressure for free. Some member not that long ago said his DME charged him $25 to test it on a manometer.

Aw, man! I forgot about that part. I wasn't charged the $30 but I was made aware of the fee which was charged to the provincial government (as I'm in the provincial disability system).
Here it is. Invoice #T1801483, it's quite real, folks. Sept 5, 2012. And that wasn't to change the pressure - it was to test it, as Paula indicated. At the time I had only my old Healthdyne and I had no way of checking the pressure myself. There was a hidden compartment (as indicated in the user manual) where the pressure could be adjusted with a screwdriver, but I had no way of knowing what I'd be setting it to. Glad it's gone. But I do expect more of the same if my doctor ever gets back with a new pressure setting. I'm sure my RT will look at it as another $40 for a two minute visit so she'll be quite miffed if I just say that I'll do it myself.

[PaulaO2]

Do it yourself. You can even make your own manometer if you feel so inclined.

[SuperSleeper]

Just thought I'd stir up the pot a bit by bumping this thread for our newer members who may have not read it.

[Sleepster]

Yes, by all means. Let's keep that pot stirred!

[Dawei]

I will second the thought that Sleepster made about it being good to keep this pot stirred, Super. Quite a discussion indeed.
I've found that taking an active role in my own care isn't really difficult. Following the rules, I've consulted with my sleep specialist doc right along. His being not only a nice guy but one who listens makes it easy to do this. I've seen that my feedback to him has been responsible for him making more than a couple pressure changes as well as a change from a CPAP to an APAP machine. It has given me the feeling that he and I are both in this together.
My views of and attitudes towards docs in general may be a little different, since my spouse is one. Right along she has encouraged me to take an active role in my own medical care and speaks sadly of others who don't do so. For me, any question I raise that is answered with anything like "Don't question me; I'm the doctor and you're not" attitude is my signal that it's time to change docs or RTs or.... I've found that a good doc, PA, nurse, etc. does not display an attitude of superiority toward their patients. Instead, they acknowledge the shared responsibility needed to treat.