Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
User avatar
Pugsy
Posts: 61895
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by Pugsy » Tue Sep 06, 2022 8:26 am

So...someone mentioned having a little common FAQ sheet...never mind that we probably have it covered in the Wiki faqs that people don't read.

So here it is...a place for you guys/gals to post the common responses you all end up typing over and over again.

Have at it.

I will make it a sticky so it is sort of near the top of the main forum topic section.
I would put it up in the announcements section but past experience tells me people won't either see it or bother to read it when it is up there.
It won't be locked though.

Please keep posts clean, respectful and on topic....otherwise I will remove them. I won't let it become a pissing contest thread.
Thank you.
Mask: Bleep no headgear mask.. https://bleepsleep.com/
Machine: AirCurve 10 VAuto

I may have to RISE but I refuse to SHINE.

User avatar
Jlfinkels
Posts: 274
Joined: Sun Jun 20, 2021 3:51 pm
Location: Atlanta,GA

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by Jlfinkels » Tue Sep 06, 2022 4:02 pm

I’ll kick off with a few posts…

First and foremost as I’ve learned from Pugsy and others, it is not about the numbers on your machine, it is about quality sleep. You want to achieve as low an AHI or leaks as possible, but focus on overall sleep quality. An AHI of 2 and leaks of 20L/min may seem bad, but if you sleep like well then does it really matter? Some of us may have a regular AHI of < 0.4 and leaks of 0L/min, but still have poor sleep quality.

It is easy to get caught in the numbers game, but that is just one piece of an increasingly complex problem of poor sleep quality.
Calculate the odds of succeeding versus the odds of doing something incredibly stupid, then go ahead anyway.

User avatar
Jlfinkels
Posts: 274
Joined: Sun Jun 20, 2021 3:51 pm
Location: Atlanta,GA

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by Jlfinkels » Tue Sep 06, 2022 4:03 pm

On the topic of full face mask comfort…

One frequent question is about full face masks and how to get them comfortably set on ones face. A point well made (thanks Janknitz!) is that a full face mask with silicone seals does not need to be winched down onto ones face to keep it from leaking. The purpose of the silicon is to inflate with the pressurized air and seal against your face. You do not need to winch it down like a medieval torture device. I use the following method:

Assuming you have a properly sized mask on (which is a critical element not to be overlooked), try this…

1. Put the mask on loosely and get into your normal sleeping position
2. Run “mask fit” or your usual pressure
3. Slowly and gently tighten the straps until the leaks stop
4. Done
5. Have yourself a drink, you earned it

If it leaks after that then the mask is the wrong size, straps are stretched out, the silicon is failing, your face or mask is oily and needs a wipe with a gentle cleaning wipe, or positionally you have done something different. Sometimes you have to wash, rinse, repeat, a few times to really get it right.

Plenty of videos on YouTube from LankyLefty and others explaining this, but sometimes we need to be repeatedly reminded of the bloody obvious. And remember as Pugsy so famously says, a bit of leaks is not bad if it does not negatively affect your sleep.
Calculate the odds of succeeding versus the odds of doing something incredibly stupid, then go ahead anyway.

User avatar
Pugsy
Posts: 61895
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by Pugsy » Tue Sep 06, 2022 5:23 pm

Oh...before I forget it.....this thread is READ ONLY unless you are posting a hint about something..

NEWBIES....Please, please start a thread of your own if you need help or have a question.
PLEASE DON'T go posting your question in this thread.....START YOUR OWN THREAD.
'If this thread goes off answering everyone's questions or trying to help it will get massive and for sure no one will read it.

This will be enforced...so fair warning.
Mask: Bleep no headgear mask.. https://bleepsleep.com/
Machine: AirCurve 10 VAuto

I may have to RISE but I refuse to SHINE.

User avatar
chunkyfrog
Posts: 32663
Joined: Mon Jul 12, 2010 5:10 pm
Location: in a nice, moist, Nebraska bog

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by chunkyfrog » Tue Sep 06, 2022 8:57 pm

On the topic of mask leaks, do not expect a mask liner to stop all leaks.
The best feature of a liner is that it wicks sweat away from your face;
thus silencing the dreaded "face farts," that prevent restful sleep.
Some leaks will happen, no matter how hard you try.
The idea is good sleep-not perfect numbers.

_________________
Machine: AirSense™ 10 AutoSet™ For Her CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: second identical machine --sticking with a good thing.

User avatar
Pugsy
Posts: 61895
Joined: Thu May 14, 2009 9:31 am
Location: Missouri, USA

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by Pugsy » Wed Sep 07, 2022 2:53 am

http://www.cpaptalk.com/viewtopic/t9403 ... -road.html

I have this topic/thread with some hints already composed.
Various topics and a work in progress.
Starts off with how to deal with condensation/rain out in the mask or hose...heated or non heated options.
Mask: Bleep no headgear mask.. https://bleepsleep.com/
Machine: AirCurve 10 VAuto

I may have to RISE but I refuse to SHINE.

User avatar
jimbud
Posts: 1425
Joined: Sat Dec 01, 2018 8:19 pm

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by jimbud » Wed Sep 07, 2022 1:48 pm

This this not my idea. This is the excellent chunkyfrog's. :D

Fot Resmed P10 users (mostly):

Use a WaterPik (or similar device) to finish cleaning the mesh vent.

This really, really works! :D

Thank you chunkyfrog. :wink:

JPB

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: Sleep on a Buckwheat Hull Pillow.

User avatar
jimbud
Posts: 1425
Joined: Sat Dec 01, 2018 8:19 pm

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by jimbud » Thu Sep 08, 2022 8:46 am

Ok, another one. :D This one is from the indomitable palerider.

If you are having trouble with a stiff air hose (packaging kinks/curves) causing hose management problems:

Put the hose in the clothes dryer for a one or two minutes at normal heat.
Be sure to stop and check pliability. Too much time in the dryer...not good. :(
I then lay it out on flat surface (bed?) to cool.

I have tried it and it works. :wink:

Thank you, palerider.

JPB

Seems obvious, but I don't do this to a CPAP heat the the air you breath in hose. Newbies. :?

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: Sleep on a Buckwheat Hull Pillow.

User avatar
lazarus
Posts: 214
Joined: Sat Mar 12, 2022 3:21 pm

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by lazarus » Sun Sep 11, 2022 6:20 pm

1. Don't be afraid to ask for help. Many of us here have had to ask for help ourselves at some point. We got it and are paying it forward. The fact that so many patient-help sites exist for PAP/sleep issues proves that a lot of this stuff isn't self-evident to an awful lot of people.

2. Research. Read. Think. Learn to use Google search like a pro researcher. It REALLY pays off for sleep issues because the principles of using PAP effectively in sleep medicine is a fairly new sub-specialty in medicine, relatively speaking.

3. Learn whom to pay particular attention to in forums. The number of posts may not tell you much. Don't be quick to foe someone or block posts from the people who may come across to you as jerks. Often they are just trying to be online characters or trying to be funny. And often just beneath the jerkiness is some very valuable information that may save your life.

4. Along those same lines with forum participation, don't let grumpiness of some posters scare you off. It's the Internet. No one in a forum can damage your actual reputation in real life or hurt you physically. So try to laugh things off without overreacting and certainly without returning insults. That gains your online personality more respect in the long run because people instinctively know how much strength it takes to show restraint and to be respectful to others despite being disrespected yourself. Turn the other post.

5. Try to make your problem-solving fun but methodical at the same time. Try one thing at a time, and give it time to see if it helps. Then don't be discouraged if that one thing doesn't help. Try something else, and pat yourself on the back for keeping at it. There will be an even bigger sense of satisfaction once you stumble on something that helps.

Endnote: From my point of view, veterans should be cheerfully willing to keep answering the same questions over and over. If a veteran wants to make his or her own personal boilerplate answersheet for copying and pasting answers, great. But personalizing the answer to the specific knowledge level and personality type of each poster is likely the better approach, in my opinion. Each newbie poster is a unique human being, after all. And the purpose of any medical patient-helping-patient forum is to help newbies--not to be especially convenient for, or entertaining to, the veterans.

Just sayin'.
"As long as we are fortunate enough to be breathing, we will breathe in, breathe through, breathe deep, breathe out. And I'm a doctor now, so I know how breathing works."--Taylor Swift after her honorary “Doctor of Fine Arts” degree from NYU.

User avatar
Jlfinkels
Posts: 274
Joined: Sun Jun 20, 2021 3:51 pm
Location: Atlanta,GA

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by Jlfinkels » Thu Sep 15, 2022 7:29 am

Some more thoughts following up on the excellent advice of Lazarus…

When things are not going well, consider the following.

1. CPAP is a process such that even those with years of use will have bad nights, weeks, months
2. A bad night or few bad nights, does not mean more bad nights
3. Don’t get too frustrated, I know it is easy to do but we tend to overanalyze things that are temporal
4. Only change one thing at a time
5. Continue to ask questions here and there are many who can help

Hang in there. You are now in a maze of twisty little passages all alike. Things will work, then not. Things that did not work, may now work. Give yourself time.
Calculate the odds of succeeding versus the odds of doing something incredibly stupid, then go ahead anyway.

User avatar
chunkyfrog
Posts: 32663
Joined: Mon Jul 12, 2010 5:10 pm
Location: in a nice, moist, Nebraska bog

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by chunkyfrog » Sun Sep 18, 2022 10:58 am

At first, it may be helpful to use the cpap while watching TV, as distractions
will reduce anxiety, and eventually normalize the sensations during therapy.
Yes, use while awake will be included in usage, which can help boost compliance stats,
but those requirements are minimal--ideally, you should never sleep without cpap.
The sooner this becomes a habit--the better.

_________________
Machine: AirSense™ 10 AutoSet™ For Her CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: second identical machine --sticking with a good thing.

User avatar
RogerSC
Posts: 1842
Joined: Sat Jul 21, 2012 1:11 pm

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by RogerSC » Tue Sep 20, 2022 3:53 pm

One thing that helped me a lot to get started (and to get enough data on my second sleep study) is using Ambien for my first week on CPAP. When I started on CPAP, I had a couple of essentially CPAP-less nights because I took off my mask so I could sleep. Got a prescription from my sleep doctor for Ambien, used it for a week. Slept fine for that week, got used to wearing and sleeping with the whole kit. Stopped using the Ambien after a week, and I was off and running for the next 10 years.

Also used it for my second sleep study, since I only got about 3 hours sleep for my first study, barely enough data for a prescription. For the second sleep study, with Ambien, got plenty of sleep and lots of data. And much less stressful and more peaceful.

I realize that this isn't for everyone, but if your sleep doctor thinks that it'll help you, give it a try. Especially if you're a light sleeper, like me.

Frequentflyermom
Posts: 16
Joined: Sat Mar 15, 2014 2:49 pm

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by Frequentflyermom » Fri Sep 23, 2022 12:02 pm

For easy face mask cleaning:

I just spritz my mask in the morning with Clean Smart (hypochlorus acid) that I learned about on this forum. Every few weeks I wash the whole thing out. Much easier!

User avatar
chunkyfrog
Posts: 32663
Joined: Mon Jul 12, 2010 5:10 pm
Location: in a nice, moist, Nebraska bog

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by chunkyfrog » Sat Sep 24, 2022 9:37 pm

Unscented baby wipes work beautifully for freshening your mask.
And they are very affordable!

_________________
Machine: AirSense™ 10 AutoSet™ For Her CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear
Additional Comments: second identical machine --sticking with a good thing.

User avatar
robysue1
Posts: 116
Joined: Sun Sep 18, 2022 3:39 pm
Location: Buffalo, NY

Re: Sticky....Attn Newbies...Hints from forum veterans to help you with therapy hurdles

Post by robysue1 » Thu Sep 29, 2022 11:13 am

How to accurately describe your problems.

A lot of new PAPers come here and describe the problems they are encountering in vague language along the lines of "I can't breathe with the mask on" or "the mask is uncomfortable" or "I can't get to sleep with the mask on." But many different problems with different solutions can be described using the same vague language such as "I can't breathe" or "the mask is uncomfortable" or "I can't get to sleep with the mask on."

In order for us to help you, you need to really listen to your body and figure out exactly what kinds of things make it difficult to get to sleep with the mask on your nose and air blowing down your throat. And then you need to accurately describe those problems as best you can.


Common comfort complaints that can lead to problems with getting to sleep include:
  • "I can't breath problems"
    • Feeling like there's too much air coming in through the mask making it hard to exhale fully. So you feel like you "can't breathe."
    • Feeling like there's not enough air coming in through the mask making it hard to inhale fully. So you feel like you "can't breath."
    • Feeling like the machine is trying to force you to breath by making you inhale (or exhale) before you are ready to.
    • The air coming in through the mask is too hot, too cold, too dry or too damp for you to easily breathe.
  • Mask problems
    • The mask is uncomfortable because you think you have to tighten the headgear to the point where it hurts.
    • The mask irritates your skin.
    • The headgear gets trapped in your hair.
  • Leak problems
    • Your mask leaks. And the leaks wake you up. But you can't seem to fix them.
    • Your mask leaks and you're aware of air blowing into your eyes.
    • Your mask leaks and you're aware of air blowing out around the edges on the mask or onto your lips or chin.
    • Your machine data indicates you have leaks and even if the leaks don't wake you up, you have dry eyes or a dry mouth when you wake up.
    • Your machine data indicates you are leaking, but you can't feel any leaks, you don't wake up, and you don't know if the problem is the mask coming unsealed or if you are mouth breathing while using a nasal mask.
    • You are wondering if the leak data you are looking at is acceptable or not. All masks have built-in intentional leaks. Some machines report total leak, including the intentional leaks; some machines only report unintentional leaks.
  • Humidifier related problems
    • Your nose and/or mouth are too dried out when you wake up. (If your mouth is too dry, that could be a leak problem instead of a humidifier problem.)
    • You have a wet nose because there's water in your mask.
    • You hear a gurgling sound with each and every breath because there's water in the hose.
    • The air coming through the hose is too hot, too cold, too dry, or too warm for you to be comfortable.
    • Your humidifier seems to not go through any water at night.
    • Your humidifier seems to go dry before you wake up.
  • Aerophagia problems
    • I wake up with a stomach full of air. (Tell us how bad it hurts and how often it happens.)
    • CPAP seems to make my acid reflux worse.
    • I wake up needing to fart--a lot.
    • I wake up needing to belch--a lot.
    • I feel like air is being forced into my stomach as well as my throat.
  • Miscellaneous comfort problems that can lead to not being able to get to sleep easily
    • Your nose itches. And you can't scratch it. So it itches even more.
    • The exhaust vents blow air on your arms, your chest, bounce off your bedcovers and into your eyes, etc.
    • The back of your throat tickles like it's never tickled before when you are going to sleep.
    • You can hear the sound of your own breathing and it sounds like Darth Vader. And that keeps you from getting to sleep.
    • You just don't see how to make CPAP and your favorite sleeping position play nice with each other. (Yes, you can stomach sleep with a CPAP mask on your face.)
    • You get trapped in the hose every time you try to change position.
    • You lie there as still as possible because you're worried moving will trigger leaks or you'll get trapped in the hose or you'll pull the machine off the night table when all you really want to do is move around in bed.
If I didn't manage to list your biggest pet peeves about trying to sleep with a CPAP machine, then try to articulate as best you can what specific things make it hard for you to get to sleep when you are trying to use your CPAP machine. Because as crazy as you think they sound, someone here will have experienced something similar. And you'll find all kinds of suggestions on what to try.


Efficacy questions/problems

We also get a lot of new posters who have questions about the efficacy of their CPAP therapy. Most of the time these questions come from people who have been PAPing for a while, but who are not feeling any better than they did before they started CPAP, and in some cases, people feel worse than they did before starting CPAP. Again, it's important to describe the full problem if you want us to help you. If you are not feeling better, but you think you should be, it helps us help you if you include the following information:
  • Your original sleep disordered breathing diagnosis: How bad was/is your untreated apnea? What were your daytime symptoms prior to starting therapy.
  • How long you've been PAPing in terms of days, weeks, months, or years.
  • How long you use your CPAP/APAP each night.
  • If you sometimes or frequently sleep without the PAP, that's critically important information
  • Any data you can provide about your treated OSA: What's your machine reported AHI? How has it changed over time? Downloading OSCAR or joining SleepHQ will allow you to post detailed daily data that will help us help you a lot more than just the summary data off the machine or from a site like MyAir will.
  • Information about your other medical conditions or medicines if they can affect the quality of your sleep: PAP fixes nothing except sleep disordered breathing (aka OSA and related conditions), and it only fixes sleep disordered breathing if you are sleeping well with the mask on your face.
  • Information about what you've already tried (if anything) to increase the efficacy of your PAP therapy and improve your sleep. Also give us an idea of why things failed if they didn't work.

_________________
Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: DreamStation Heated Humidifier
Additional Comments: Also use a P10 mask
First joined as robysue on September 18, 2010. Forgot my password and the email account I used to sign up was on a machine that has long since died and gone to computer heaven.

Correct number of my posts is 7250 as robysue + whatever I have as robysue1