CPAPtalk.com

I would guess that the real stats for CPAP failure are even higher than the 50% quoted above.

BUT that's not why you came here--for permission to quit. Because you came to the land of people who SUCCEED at CPAP. Not just because we all strapped the mask to our faces and thought everything was easy and wonderful. We are the ones who struggled and fought for our own health, who got help from the others who came before us, and who stuck around to pay it forward.

So you came to the right people. We CAN help. We know where you are, where you've been, and where you're going because we all have been on the same path. You did a good thing finding us here, now let us help.

Tell us your equipment (Make and model of your machine) and your current mask. Tell us about your sleep test results. And give us a list--worst to not so bad, of the things that are keeping you from using your CPAP.

iCePAP wrote:I'm sitting at my desk, practicing with my machine and mask that I picked up for the first time today - yes, total newbie.

Dssquared wrote:Would nasal pillows work with this device?

Practicing with your cpap is actually a good idea, especially if you have trouble falling asleep with it on. Sit and watch TV or do something quiet to do while using your cpap. You are training your brain to accept the mask as normal and be more relaxed with the machine. Getting the right mask is also a hurdle that some people face. Keep trying masks until you find one that works. A pillow might work for you, all depends on if you breath primarily through your nose. It sometimes takes several masks before you find one that works for you.

I'm so sorry to hear how hard it has been for you to get this therapy to work for you. I have been on CPAP for about 3 years now, and at this point it is a total non-issue most of the time. It's a pain to travel with, and keeping all the parts clean can be a chore, but the actual sleeping is not a problem.

It wasn't that way in the beginning, though. I went through about 12 different masks before I found one that didn't keep me awake all night. My DME provider gave me the first 4 or 5, the rest I bought online (with return policies on most). I ended up with the Aloha nasal pillow mask, then switched to the Airfit P10 when it came out, and never looked back.

The first masks all did what you say: slipped, rubbed, leaked, caused breakdown of the skin on the bridge of my nose, left marks on my cheeks that lasted all day.... and no one seemed very concerned about how hard it was for me. Except me. So I started reading forums (like this one) and online reviews and just talking to different respiratory therapists at different offices... For a while I used a variety of different mask liners (thin cotton rings that fit between your skin and the mask edges). They helped with the leaking noise, and the red marks. A bit. The masks still slipped around a lot. Eventually, as I said, I found a mask that works for me.

Now, after 3 years, I've lost a bunch of weight, and my pressures have come down a lot, but I'm still using the mask all the time, every night.

So all I can hope for you is that you can start looking for a better solution, and for a mask that fits and makes it possible to breathe and sleep at the same time.

Good luck! Your life and health are worth the struggle!

A short answer to your question - I give up every single night... then I put the mask on. I still don't like it even though it's been four years and I don't feel any better, even with good data. However, for all the reasons mentioned in this thread, on goes the mask.

I'm still occasionally trying different/new masks because maybe that next one will be the one!

Much good luck to you!

Dssquared wrote:I hear all of the success stories about CPAP machines but I'm curious. What percentage of people have attempted to use these devices and have just plain given up?

Lots. I'd guess more than 50% give up. In my family I'm the poster child for use of CPAP. I have some relatives who also share their CPAP machines with the closets.

The sleep doctor and the CPAP people have proven worthless really. I work in a large cardiology group and they don't really know what to say other than 'try and use it more'.

From what I've seen, the doctors aren't really trained to focus on making the therapy easy or comfortable. I guess they assume "someone else" will take care of that part. For me that someone is this forum right here -- cpaptalk.com.

Some recommendations are:

- Find the easiest mask to take off and put on that will work for you without significant leaks. For many (including myself) this is the nasal pillow. Much less "stuff" on your head. Much less surface area to leak. The Airfit P10 is my current favorite. Even if you breath a little from your mouth, I found that you can train yourself to keep your mouth shut and breath through your nose. Some use a mouth strap to help with the training: https://www.cpap.com/productpage/breath ... strap.html If you don't need the chin strap, it'll be more comfortable, but you might find that you are mouth breathing enough that you want to try it -- at least for a while.

https://www.cpap.com/productpage/resmed ... dgear.html

Other things that make the treatment easier are to practice with the mask. Use it while watching TV. You can even use it with the machine. Get used to the breathing while wearing the mask watching TV. I found that technique helped me ease into therapy without feeling the pressure of thinking I had to fall asleep.

I was also annoyed by the noises the hose made as it dragged across my headboard. I found that a hose cover worked wonders. Here's the one I use: https://www.cpap.com/productpage/snuggl ... cover.html

Personally, I forced myself to use the mask. I found myself staring at the ceiling for a couple of weeks. But after that, it got easier and easier. Now, three years in, I can't imagine sleeping without my machine.

Good Luck!

John

Let's look at this from a little different perspective...

CPAP isn't something you endure. It is something you embrace.

You need to change the way you look at it. As the sun goes down and sleepy time gets close, you should experience a quickening of the heart in anticipation of masking up and getting a wonderful nights rest.

As you lay there with your mask on and the machine running, don't get mad at it. Instead concentrate on how wonderful it is keeping your airway open so you can keep your oxygen at an optimal level. You can also put some headphones on and listen to some relaxing music, or some interesting lectures, or some books.

You already know that this isn't going to be something easy. So don't get your expectations set too high. Set reasonable expectations and pat yourself on the back as you reach these.

As you run into specific issues there is a wealth of knowledge on this forum so post your issues and we will do our best to guide you through them.

While this may sound a little silly, many times an attitude adjustment can pave the way for success.

I'm a newbie too, so I know my advice isn't worth much, but I'll add my two cents --

I'm using a full face mask, because the drool on my pillow every morning tells me I'm a mouth breather. I tried on a nasal pillow at the DME and decided that even with a chin strap that wouldn't be the route for me. But there are some things that I think make the mask easier for me to use (or not, I'm sure there are other in here who may refute some of these) -

I scuba dive, so I'm used to having tubes hanging out my mouth.
I work in HazMat. While it isn't a regular part of my job, I have worn the moon suit, I have worth both supplied air and ambient air respirators. I'm used to having stuff around my mouth.

What if you could introduce the elements of the PAP when you're not trying to sleep? Put on the mask (without hose) and watch your favorite half hour sitcom. Then put on the mask and watch your favorite hour long show. PUt on the mask and watch your favorite movie. Then introduce the hose. Basically, put on the mask and do something other than sitting there thinking about the mask.

Some thoughts. Good luck to you!

Ambien makes me too sleepy to give a crap about the mask and machine and I fall asleep very quickly after taking only 5mg. Might be something you'd want to consider as a way to get to sleep and to not fling the mask across the room.............

I was painfully sleep-deprived until cpap.
All I needed was a taste--and I wanted MORE!
So I worked my little green hiney off to get some.
Sometimes misery can be a gift.

I hope you by now have reconsidered and are trying to get used to CPAP. You mentioned you are afraid of stroke. Have you also thought about dementia. In addition to stroke and heart failure, dementia is also associated with the drop in oxygen levels caused by sleep apnea.

As a side note, LOTS of people give up. But this isn't a "I tried cpap, hated it and QUIT" forum. This forum is of people with differing levels of success, many who are lost in the cracks of the medical system, trying to work past any issues.

Dssquared wrote:I'm also a pretty severe insomniac, I get about 20-25 hrs of sleep in a week, so I tend to just sit there with this mask on looking at the ceiling until I give up and just get out of bed.

You didn't mention it, but I'm hoping that your sleep doctor is treating your insomnia as well? It actually sounds like the insomnia is interfering with the CPAP therapy. Being so sleep deprived on a long-term basis has got to make dealing with anything a million times harder! Give yourself credit for continuing to seek solutions!

If you are not happy with your doctor or local DME, I'd encourage you to "recruit" someone else to join your "sleep team." A knowledgeable, supportive team makes a huge difference. My first DME for CPAP was pretty good, but she moved out of the area. I tried other local DMEs and didn't like the customer service at any of them--especially their billing practices. Lucky for me, I found cpap.com and cpaptalk.com and have never looked back.

You CAN do this. Once you find a way to successfully treat your OSA and insomnia, life will be better!!

Dssquared,

Just wanted to say you are not alone in your frustration and desire to give up. I was diagnosed five months ago (closer to six now) and received my CPAP around three to four months ago. I tried it for about a week and then got frustrated and banished it to the floor beside my nightstand. I had had a great experience in the lab but when I was at home the mask would shift or I would end up snatching it off in my sleep. Hence it's banishment.

It wasn't until this Sunday that I was finally motivated to really try again. What motivated me was finding out that the woman I love was staying up and depriving herself of sleep to make sure that I continued breathing. If you're like me it's not always easy doing the right thing for yourself so do it for your loved ones.

As for me and "Snuffy" we're getting along better and are working on our third night of compliance and good sleep and my wonderful fiance is fast asleep.

I'm sorry, OP, but you are just going to need to grow up and face the music. Wearing the hose is not like facing a firing squad. You need to accept it as part of the daily routine and reap the benefits. The benefits can be great, and you can feel great if you learn to optimize your therapy. Take sedatives initially if you can not make it through the night. You will eventually adapt to the therapy if you are determined to make it work. If you don't make it work, one might feel sorry for your spouse who might have to change your diapers as if you were a baby after your stroke. That would be a shame, but maybe that would please your kind.

"your kind" ?

Every time I think I've heard it all here, along you come and prove me wrong.