CPAPtalk.com

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.

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.

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!

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.

[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.

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

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.

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.

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

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.

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).

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.

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.

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...)]

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!"