CPAPtalk.com

jonquiljo wrote:

Goofproof wrote:You live longer and better if you use it correctly, if you chose not to, you don't. The choice unlike taxes paying taxes is yours. jim

Do you mean that we have to pay taxes? I thought we only had to if we wanted to!

Only if you don't live under radar, those who work in the open have to pay taxes. drug dealers and low lifes are exempt from taxes. AND illegals..... Jim

Try to work really hard on mind over matter, reminding yourself that it is helping you. When I started out, my thinking went like this as I was falling asleep: "I HATE this thing. It's keeping me healthy. This air drives me nuts. It's stopping me from snoring,etc., etc."). Keep trying, and at least try to go ten more minutes than you made the night before. Eventually exhaustion will take over and you can fall asleep (that's what finally did it for me).

The only full face mask I've found that is comfortable for my face is the Legend. None of the major suppliers carry it. It's very light weight and very inexpensive. It runs small - I use a medium in other masks but a large Legend is almost too small. Do a web search and you can find a source to look at/purchase it.

By now you have a lot of posts about what NOT using your cpap can do to your well being over time....so I won't repeat all that. But what doesn't get said enough to newbies, I think, is that wearing the mask eventually becomes second nature...at least to some of us. It is SO bizarre at first...almost as weird as the sleep study and all the wires and sleeping in a strange place was! But...at least for some....after several months of masking up...it is a non-event. At times I have to reach up to my face to make sure the mask is still there! So...after the learning curve....it should get way better for you.....IF you hang in there! You are creating a new habit....

Ditto to what Sleep T said.

Please don't give up. I saw your question about your pulse ox results. With Oxygen levels that go down as low as you reported, it is critical that you stick with it some how or another. I know the pressures are high, I know you have special issues. Do the best you can for any amount of time that you can.

HoseCrusher wrote:Terri, I am usually thinking a little "outside the box," so just keep that in mind.

When I look at your situation, I think that the pressures you ended up with will give you excellent therapy, but since you can't stand them you don't use your machine. Perhaps lower pressures (that give you some help but are not optimal) may be more tolerable and help you get into the habit of using the machine. When you get into the habit of using your machine every night, you can then "inch" up on your pressure with the goal of eventually ending up at the optimum pressures you need.

I don't know enough about "sub optimal" therapy to know if this will work, but I am lead to believe that every obstructive event you have does not require maximum pressure to resolve. I guess the main question would be that if you got rid of all your little obstructions, but not the big obstructions, would your quality of sleep improve...

I'm quoting HoseCrusher's post to make sure it's not missed and would like to hear some more opinions. I'm not a Dr or a cpapper(my husband is), but raising pressure in increments sounds like something that might eventually work out and might be of benefit short term. Any thoughts?

DoriC wrote:
I'm quoting HoseCrusher's post to make sure it's not missed and would like to hear some more opinions. I'm not a Dr or a cpapper(my husband is), but raising pressure in increments sounds like something that might eventually work out and might be of benefit short term. Any thoughts?

Dori, given OP's multiple problems and significant desats, I would think that any therapy would be better than no therapy. Complex Sleep Apnea is a special beast too. I would think that starting at a lower pressure and working up would be better than nothing and might give her a better chance of becoming accustomed to all this. She has to start somewhere. Gotta get a decent mask. Less on her face. I would think one of the nasal pillow masks like the Swift FX would be a good start. It doesn't have all the straps and such that the others do. Then if she mouth breathes, then deal with it later.
Just my opinion, for what it may or may not be worth.

the only thing that I have to add here... is you could also talk to your dentist about getting a bite guard if you don't have one. I wear both my bite guard and my mask nightly.

Hello from Australia
I am very happy that I found this forum!
I have been trying to adapt to my cpap machine for years. I recently was overseas and did not have it and I seemed to sleep much better so I was on the verge of continuing without it........until I read the comments here. That soon changed my mind about that idea!
I particularly was interested in the idea of altering the pressure to see if that helps. So Im off to a sleep physician to have anoher go.
Thanks again to all.

Welcome to the group.

Feel free to ask questions and tell us what you struggle with. I am fairly new here too, only 7 months. But I have found that just about anything you can encounter, somebody here has been there, done that, and has some suggestions that will help.

TmjTerri wrote:Thank you all so much for responding to my question. I guess I really have no choice but to try and get used to it. Part of the problem is that I had to have a total joint replacement on both sides of my jaw (my tmj area) in 2002 and I have to take strong pain meds for the rest of my life. It hurts my face so bad when I wear my mask. The pain meds do not help with the pain relating to my mask. The other part is that my pressures are so high and I hate the feeling of all that air being forced into my nose/mouth. I hate, hate, hate it. I am so brand new to this and I don't understand all the lingo yet. I need to read up on this and get my but back to using my machine. Thanks for all of the advice. I really appreciate it. I guess it is one baby step at a time. Terri

Hi you could try this 100% cloth mask from circadance they say it is very very soft no pressure points anywhere see link below for more info

p.s. They make 2 masks one is the Elan cloth nasal mask and the other is the sleepweaver nasal cloth mask in this video link below

https://www.youtube.com/watch?feature=p ... m4P8zW6yg0

cheers Peter

TmjTerri wrote:Thank you all so much for responding to my question. I guess I really have no choice but to try and get used to it. Part of the problem is that I had to have a total joint replacement on both sides of my jaw (my tmj area) in 2002 and I have to take strong pain meds for the rest of my life. It hurts my face so bad when I wear my mask. The pain meds do not help with the pain relating to my mask. The other part is that my pressures are so high and I hate the feeling of all that air being forced into my nose/mouth. I hate, hate, hate it. I am so brand new to this and I don't understand all the lingo yet. I need to read up on this and get my but back to using my machine. Thanks for all of the advice. I really appreciate it. I guess it is one baby step at a time. Terri

Best to find out if your machine has a modem. I got a new machine with a modem. I've been taking my elderly mother to the E.R. many times over the last few months wondering whether she'd survive every time. My machine scores were close to the requirements but not exactly, but it's still called it "NON-COMPLIANCE" when the numbers are just short of the required parameters.

I'm going to see if my old S8 machine still works (and I have to get a new water chamber because he metal piece at the bottom fell off). I may have to shelve the whole problem until my mother's health resolves. People can only take so much pressure before they break. I started heavy tranquilizers (antidepressants have too many side effects so I can't take them). I'm wondering if the meds are effecting my compliance but I do know tranquilzers are bad for APNEA because it loosens the throat muscles and makes APNEA worse --- and so does extreme stress. Giving up is another option and at this point, I'm starting to lose my drive to fight the system.

Thanks!

What you wrote is very true. This is why a 70% compliance rate on a new machine is
extreme. They yank the machine out of your home if you don't meet compliance rates.
So, insurers wind up paying for the serious health problems listed in the link you have.

In the long run, not only is it detrimental to patient's lives, but also the U.S. budget
deficit.

Easy to see how things aren't going in the right direction here....

robysue wrote:From Webmed.com, the following effects of untreated sleep apnea are listed:

What Are the Effects of Sleep Apnea?

If left untreated, sleep apnea can result in a growing number of health problems including:

* High blood pressure
* Stroke
* Heart failure, irregular heart beats, and heart attacks
* Diabetes
* Depression
* Worsening of ADHD

In addition, untreated sleep apnea may be responsible for poor performance in everyday activities, such as at work and school, motor vehicle crashes, as well as academic underachievement in children and adolescents.

And these are really only some of the consequences. Untreated sleep apnea may also lead to weight gain or may make it more difficult to lose excess weight (http://www.webmd.com/sleep-disorders/gu ... ing?page=2). And like obesity, untreated sleep apnea may make it much more difficult to treat or manage other existing health conditions---even if they are not directly related to the apnea itself.

TmjTerri, you owe it to yourself to NOT give up. Like many other things in life, OSA is not fair and it sucks. And learning to sleep with a hose on your head requires both hard work and perseverance. It helps to have a quality health care team in place---but most of us don't. So we have to learn to be proactive about our bodies and our health. It's a long (and intimidating) journey for many of us. But remember---the longest journey begins with a single step: And in learning to use CPAP, that first step is deciding you will put the necessary work into making CPAP work for you.

Have you ever tried a cloth mask?
Either that or nasal pillows.
Just use it! Or suffer the consequences.

Hi,, I been using my cpap for several month,, I had a hard time with different sized of mask I loose my breathing but to answer your question u must get used to it,, and I would suggest using the nasal cannula it so much better, it light and u really can't tell u got it on,,,

jmuffin wrote:Hi,, I been using my cpap for several month,, I had a hard time with different sized of mask I loose my breathing but to answer your question u must get used to it,, and I would suggest using the nasal cannula it so much better, it light and u really can't tell u got it on,,,

a nasal cannula is a different thing. the closest thing in the cpap world is the nasal prong, but they're not at all popular.