Whats the best tip you learned from CPAP talk?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
User avatar
Resister
Posts: 265
Joined: Sat Jun 25, 2011 5:55 pm

Re: Whats the best tip you learned from CPAP talk?

Post by Resister » Wed Oct 26, 2011 10:34 pm

ameriken wrote:
Resister wrote:Narrowing the advice down to one specific tip is incredibly hard. What isn't hard is coming up with the biggest benefit I received by coming here:

Help in getting over my absolute fear/dread of starting Cpap. It was SO hard for me to transition, and the people here made me realize I was still OK, my situation would work out. Wearing a mask at night didn't make me "less than."

Thanks, all! I COULD NOT have come this far without the support.
drdrew wrote:DONT GIVE UP.
For anyone on CPAP, IMO these are perhaps the most important tips out there. The technical advice is worthless if someone gives up or flakes out or if they cannot accept that they have this issue. I've heard that as much as 50% of the people who start CPAP end up quitting it and that is so sad.

As long as someone perseveres and knows it's ok to have sleep apnea, there is almost always an answer to the techincal issues.
That's a TON of people--I could easily have been one of them.

The people I worry about are the ones who don't have a clue they have sleep apnea. There are a ton of those too.
~Mama is happy when she sleeps with Pap-py~

User avatar
Ineedanap
Posts: 88
Joined: Tue Sep 20, 2011 4:58 pm
Location: Midwest

Re: Whats the best tip you learned from CPAP talk?

Post by Ineedanap » Thu Oct 27, 2011 9:41 am

I thought of two more.
People (myself included) successfully put their masks and reservoirs in the dishwasher on the top rack, low heat.
Pull the hose off the mask when you get up instead of turning the machine off and taking the mask off.
I never would have made it without this forum.

BrandonB
Posts: 79
Joined: Tue Oct 18, 2011 3:41 pm

Re: Whats the best tip you learned from CPAP talk?

Post by BrandonB » Thu Oct 27, 2011 11:10 pm

Cuda wrote: 15) I'm not alone, it's a treatable illness and I should consider myself lucky and every time I meet someone with untreated OSA I realize just how lucky I am to have found this place.
16) You have not failed until you decide to give up.
Right on all your points, but especially these two!
Life before my CPAP was really no life at all!

NCHawk
Posts: 37
Joined: Sun Mar 06, 2011 9:22 am
Location: Central NC

Re: Whats the best tip you learned from CPAP talk?

Post by NCHawk » Sun Oct 30, 2011 6:43 am

I didn't know that it was possible to read the data from my S9 until I read about how to get the ResScan software. Unfortunately, I couldn't get it to work on my computer, but then I heard read about Sleepyhead, which works fine. I haven't had much time since I set it up to learn all its ins and outs, but at least I know the info is available.

Also, I learned how to adjust the ramping function, which my DME did not tell me about when I got my machine. Which was very helpful because somehow it had gotten changed to immediately go to my full pressure, which was very annoying and probably contributed to the problems I was having falling asleep.

StevenXXXX
Posts: 165
Joined: Tue Jan 04, 2011 4:22 pm

Re: Whats the best tip you learned from CPAP talk?

Post by StevenXXXX » Sun Oct 30, 2011 10:31 am

[quote="idamtnboyI haven't been able to find Lansinoh around here, not Walgreen's, not Walmart, not local pharmacy, not nowhere. Any suggestions where to look again, or some more?[/quote]

Go to their website at http://www.lansinoh.com/
On the bottom right of the 1st page you can enter your zip code & get a list of nearby brick & mortar AND online vendors who sell it.

_________________
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: ResMed ResScan Software Version 3.16 Do NOT use either Ramp or EPR

User avatar
Suetois
Posts: 72
Joined: Tue Dec 14, 2010 6:23 pm
Location: Northern Virginia

Re: Whats the best tip you learned from CPAP talk?

Post by Suetois » Sun Oct 30, 2011 12:54 pm

Tape the headgear to your face to discourage yourself from taking the mask off in the middle of the night.

User avatar
robysue
Posts: 7520
Joined: Sat Sep 18, 2010 2:30 pm
Location: Buffalo, NY
Contact:

Re: Whats the best tip you learned from CPAP talk?

Post by robysue » Sun Oct 30, 2011 3:32 pm

Way back on page 1, I responded with two important tips concerning books that proved to be invaluable to me in understanding my own difficult time adjusting to CPAP and what I might do about it.

I forgot another absolutely critical idea that was suggested in different forms by NotMuffy and SleepingUgly back in April on my Robysue's Summary Graphs thread. As NotMuffy put it so powerfully:
NotMuffy wrote:OK, I have a question (or two):

What exactly do you hope to accomplish?
  • Live longer
  • Sleep better
  • Feel better
Do you think AHI 0.0 will accomplish that goal(s)?
With NotMuffy's profound questions and SleepingUgly's important suggestion to start thinking of outcome variables in terms of measurable factors that were important in the sense of how well/functional I felt during the daytime, I was finally able to start focusing on tracking improvements that were important to ME rather than simply focusing only on things like AHI and leak and how badly CPAP had disrupted my sleep and how lousy I felt in spite of good CPAP numbers.

It's not been completely smooth sailing since that time. But the time and effort I put into answering NotMuffy's questions and in figuring out what outcome variables were significant to me and how to quickly measure them proved to be extraordinarily useful. My answers to NotMuffy's questions and SleepingUgly's siggestions proved to be an important part of my mentally coming to accept CPAP as a given in my life, which has, in turn lead to me being able to let go of much unproductive anger towards the machine and the discomforts it caused (and still causes on occasion) in my life.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5

User avatar
idamtnboy
Posts: 2186
Joined: Mon Nov 01, 2010 2:12 pm
Location: Idaho

Re: Whats the best tip you learned from CPAP talk?

Post by idamtnboy » Sun Oct 30, 2011 4:00 pm

StevenXXXX wrote:[quote="idamtnboyI haven't been able to find Lansinoh around here, not Walgreen's, not Walmart, not local pharmacy, not nowhere. Any suggestions where to look again, or some more?
Go to their website at http://www.lansinoh.com/
On the bottom right of the 1st page you can enter your zip code & get a list of nearby brick & mortar AND online vendors who sell it.
I finally found it at Wally World, after the tip above about looking where the baby bottles are! I'd always looked in the pharmacy section. Male logic I guess, the stuff is used for health care so it will be in the health care section, right? Wrong!! It was on a hook bright as a '57 Chevy front bumper right by the baby bottles.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Hose management - rubber band tied to casement window crank handle! Hey, it works! S/W is 3.13, not 3.7

User avatar
WearyOne
Posts: 1797
Joined: Sat Mar 03, 2007 3:30 pm
Location: USA

Re: Whats the best tip you learned from CPAP talk?

Post by WearyOne » Sun Oct 30, 2011 6:21 pm

Before I actually bought anything:

- Make sure you get a data-capable machine
- Get a copy of your prescription
- Get a copy of the sleep study reports

After starting therapy:

- Cut the chin thingy off the Hybrid
- Instructions on how to change the pressure

_________________
Machine: DreamStation 2 Auto CPAP Advanced with Humidifier
Additional Comments: Oscar Software | APAP: 9-10
Innomed Hybrid Mask

User avatar
soul_power
Posts: 22
Joined: Sat Jul 16, 2011 5:32 pm
Location: Texas

Re: Whats the best tip you learned from CPAP talk?

Post by soul_power » Sun Oct 30, 2011 8:29 pm

The most helpful thing for me was reading stories from people that self diagnosed without the help of a sleep study. It was nice knowing I wasn't the only one doing it and provided me with all the necessary steps to take to ensure adequate therapy.

User avatar
RationalEntropy
Posts: 59
Joined: Sun Oct 30, 2011 7:49 pm

Re: Whats the best tip you learned from CPAP talk?

Post by RationalEntropy » Sun Oct 30, 2011 10:36 pm

In my lurking I've seen many great tips (or examples):

1) Some people serve as great case studies.
2) Some people serve as examples of what to do.
3) Some people serve as examples of what not to do.
4) Ask your doctor questions. This is best practiced when a lot of research has been poured into the issue at hand. This makes it harder to run out of questions. Critical though is VERY important.
5) Remember that you are not alone.
6) It is not illegal to change your settings.
7) An example of (3): haphazardly reconfiguring your machine is a terrible idea.
A methodical method for reconfiguring your machine based on machine data and taking note of trends is critical.

Whether the forum members know it or not their posts have helped me (as a lurker).

User avatar
Perrybucsdad
Posts: 834
Joined: Mon Sep 12, 2011 7:09 am
Location: Northeast Ohio

Re: Whats the best tip you learned from CPAP talk?

Post by Perrybucsdad » Mon Oct 31, 2011 7:09 am

This is an awesome collection of tips! Hats off to the OP.

A number of the best tips have a;ready been stated and repeated a number of times, so I won't repeat, but the one that was a challenge to me was make only ONE change to the settings at a time and let that ride at least a week before you change anything again.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: ResScan v5.9; Sleepyhead v1.0.0-beta

User avatar
DoriC
Posts: 5214
Joined: Sat Sep 13, 2008 9:28 pm
Location: NJ

Re: Whats the best tip you learned from CPAP talk?

Post by DoriC » Mon Oct 31, 2011 9:41 am

Not to look for a" perfect" AHI and a "perfect" leak line! That's a hard one for me even though my husband's sleep is so much better, he's feeling good, and he is reaping the rewards with a better quality of life now. I don't think he would have been able to endure the hyperbaric oxygen therapy he's undergoing now if he wasn't in such good condition with cpap treatment.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Additional Comments: 14/8.4,PS=4, UMFF, 02@2L,
"Do or Do Not-There Is No Try"-"Yoda"
"We are what we repeatedly do,so excellence
is not an act but a habit"-"Aristotle"
DEAR HUBBY BEGAN CPAP 9/2/08

User avatar
LinkC
Posts: 3154
Joined: Wed Oct 29, 2008 1:06 pm
Location: Amelia Island, FL

Re: Whats the best tip you learned from CPAP talk?

Post by LinkC » Mon Oct 31, 2011 1:51 pm

idamtnboy wrote: According to Walmart.com the store I usually shop at has it in stock @ $9.97.
Be sure you are looking in the "baby department"...NOT the pharmacy. Maybe you should ask for "nipple grease". That's what *I* do...and I know exactly where it is, but it's still fun to ask. (inside joke...)]

_________________
MachineMaskHumidifier
Additional Comments: 11-14 cmH2O
The OSA patient died quietly in his sleep.
Unlike his passengers who died screaming as the car went over the cliff...

User avatar
idamtnboy
Posts: 2186
Joined: Mon Nov 01, 2010 2:12 pm
Location: Idaho

Re: Whats the best tip you learned from CPAP talk?

Post by idamtnboy » Mon Oct 31, 2011 6:21 pm

LinkC wrote:
idamtnboy wrote: According to Walmart.com the store I usually shop at has it in stock @ $9.97.
Be sure you are looking in the "baby department"...NOT the pharmacy. Maybe you should ask for "nipple grease". That's what *I* do...and I know exactly where it is, but it's still fun to ask. (inside joke...)]
That's where I found it. Asked the lady clerk in the pharmacy dept where the baby care items were at. She asked what specifically I was looking for, so I told her, "HPA lanolin, nipple grease." The look on her face clearly said, "I really don't want to know!"

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Hose management - rubber band tied to casement window crank handle! Hey, it works! S/W is 3.13, not 3.7