Why this board is Soooooo Different!!

[meister]

I am struggling just as much as Liam is. My sleep lab put "PIA" on my
chart and no one returns my calls. DME is same way. They don't want
me learning or trying anything. "Just DO IT! the way we tell you". I
agree that some compliant treatment is better than NO treatment.

The big deal about this board is all the support from the folks out there
who have been through what Liam and I are going through, and are
patient and loving enough to offer helpful suggestions, and words of
comfort.

Now Liam and I (after just 2 months), smile as the next generation of
new users finds their way to this Oasis; complaining about rainout,
and red marks all over their face, headaches, no sleep, etc.

I am going to keep at it for a couple of more months, hoping and
praying for a breakthrough combination which will work for me. The
Aussie heated hose arrived today, so yet another thing to try.

I got rid of the red marks and BLEEDING cuts from my face by putting
bandaides and moleskin all over my face, before putting on my
mask. However, the DME lady had a fit and said don't do that!!

She said the mistake I was making was putting the mask on (ResMed
Ultra FF) before the air flow was hooked up. The past couple of
nights I did no bandaides and had the air running (inflating the
mask interface) before putting it on. No more red marks. However,
as everyone finds out with this stuff, Change one thing and something
else changes!! Now my PAP box constantly complains of "High Leak
in last Session!!!" So I don't know if that is a problem to keep getting
that message each morning, or not. I did get the red marks to
disappear (or maybe it is the thick skin callouses which have formed?).

So forward we go, one night at a time, trying to find the "magic"
combination.

Another thing to try, which may have helped me ... the Doctor suggested
taking the medicines which I was taking at night ... take them in the
morning instead. That might make a difference for some folks, since
you meds cause insomnia.

Thanks for all the support!!

[MelMel]

The machines can sometimes be very sensitive to mask leaks. I think your dme was half right. It is always best to fit your cpap mask while it is on and at its full pressure. So if you use a ramp or have a settling time then make sure to fit the mask while on its highest pressure. If you have an auto then there is a mask fit function on the ResMed machines that will allow you to fit the mask at a pressure 10cmH2O.

I'm not positive about all machines, but the ResMed auto considers anything over .04 a high leak. I don't necessarily think that is always a good indicator...(but I'm not an expert) If that mask seems to be fitting, not causing sores and you don't seem to get excessive leaks into your eyes or around your nose then I say- If it's not broken don't fix it. Also find out if your dme has ever even worn a cpap for more than five minutes at a time.

Here we all have to take them home and sleep with them for a week at minimum.

MelMel

[WillSucceed]

My sleep lab put "PIA" on my
chart and no one returns my calls.

I'll bite... what does "PIA" mean?

[MelMel (not signed in)]

Pain in the .... well you know.

[derek]

Pain In A**
just kidding...

[meister]

Some think Liam is a Pain in the Neck, whereas one "Guest" has a
"lower" opinion of him. It is very interesting to learn little tidbits about
the medical community. Years ago, I had a Doctor's appointment and
forgot all about it (missed 1 appointment in 10 years). Well, they stuck
this little yellow sticker on my folder. I later found out, that they use
that for "No shows!", and treat your "calls to the Clinic for help" at a
very low priority. Now Doctors are routinely charging $50 when you don't
show up for an appointment.

[JudyAnn]

So you are saying that we should turn the air on before we put our masks on. I have been putting my mask (Activa) on and then turning on the machine.

I have never had problems with red marks or sores with my Activa but some nights are better than others as far as sleeping, fooling with the mask, hose, etc. Let's face it....sleeping with all this stuff on our face connected to a machine by a hose is not the best scenerio but we have no choice. I guess we just have to keep trying different masks, ways to do do it and I say Thank God we have this forum for all the support and helpful hints to endure this.

Wishing everyone had sleep utopia.........without machines, masks and hoses......I know I am dreaming.

Judy
(An old saying........If Wishes were Horses, Beggers Would Ride)

[Liam1965]

Odd that they'd say you should have the air on before you put on your mask, when the machines have an "auto-on" feature (at least some do) whereby you put on your mask and breathe a few times, it senses it and starts for you.

Oh, and if I ever have one of those doctors who charges for a missed appointment, and he or she is then more than 45 minutes late for an appointment, I'm damn sure going to charge them. Fortunately, none of my doctors do that, but I've gotten to appointments and been told the doctor was running late, and had to wait for over an hour past my appointment time. I consider that missing the appointment, and if an appointment is a contract and billable, then it should apply in both directions.

Liam, B.S. C.S. P.A.I.

[G00fy217]

Some think Liam is a Pain in the Neck, whereas one "Guest" has a
"lower" opinion of him. It is very interesting to learn little tidbits about
the medical community. Years ago, I had a Doctor's appointment and
forgot all about it (missed 1 appointment in 10 years). Well, they stuck
this little yellow sticker on my folder. I later found out, that they use
that for "No shows!", and treat your "calls to the Clinic for help" at a
very low priority. Now Doctors are routinely charging $50 when you don't
show up for an appointment.

Meister... isn't that the truth!! I have been seeing my Doc for 10 years too and all of a Sudden, I forget 1 lousy appointment and got charged a "No-Show" I yelled at my doc... he tells me to talk to his accountant, who tells me I need to talk to my doc (such a vicious circle). So, I told my doc not to bother making reservations at any hotel I work for..... He will be charged a "No-Show" everytime he doesn't show up!!! You know, if it were a client of my hotel and they forgot to cancel a reservation, I would not charged them unless they made a habit out of it!!

Ok..... This really has nothing to do with the topic at hand... Sorry!

[Guest]

What is "rainout", anyway?? Or dare I ask???

Buttefly

[snoozin']

Butterfly,
Rainout is when you are using a heated humidifier and start getting water in your hose. It's caused by the steamy air coming from the humidifier at a higher temperature than the surrounding room air, so it cools on the way to the mask. While it leaves the humidifier as "humid air" when it cools, it reaches the mask as "water" and you get a damp face.
People use a heated hose or a hose cover to help resolve this problem, or turn the heater on the humidifier down so that it is closer to room temperature.
Debbie

[MelMel]

You don't have to have the machine on to put your mask on. But you should fit the mask while the machine is on. In other words if you are adjusting/readjusting the mask, do it while it is running and preferrably at its full pressure.

MelMel

[Liam1965]

You don't have to have the machine on to put your mask on. But you should fit the mask while the machine is on. In other words if you are adjusting/readjusting the mask, do it while it is running and preferrably at its full pressure.

Ah. That makes more sense. And by the way, is more necessary for some masks than others.

For example, the Mirage Ultra, it's an absolute must, the little silicon gasket liner doesn't puff up properly until it's inflated. On the other hand, the swift doesn't (in my experience) change much at all.

Liam, who doesn't need to have his CPAP on to fit his mask: He's full of hot air!

[dankazoo]

Maybe that is why Liam always rises to the occasion!

[MelMel]

Hi Liam,

You are right. Something like the swift or the Breeze nasal pillows it probably wouldn't matter as much. But any nasal or full face mask I would say it will make a big difference. When the machine is off there is really no way to tell if there will be leaks or not. Same thing when it comes to ramps. When the pressure is at 4 there may be no leaks but 20 minutes later when it is at 12 or something then there may be tons of leaks.

Of course some super glue and a little duct tape works wonders....

MelMel