New to the boards

Hi. I'm new here, so my issues may have already been addressed elsewhere. But I'd still love to hear from people on this. I didn't find my CPAP machine to be helpful at all for a couple of reasons:

For one thing every time I tried to exhale, I felt like I was fighting with the machine blowing air back in. It was difficult to relax and breath normally, and I would be up a good portion of the night.

Another problem was that I frequently woke up to find I had pulled the mask off in my sleep. I used the nasal pillow mask, which was the least uncomfortable of the bunch, but it didn't seem to help. I'm a side sleeper, so it also may have slid off.

What really struck me was that I did two sleep studies, first without the machine, then with it. The second study was the worst night I've ever had. I got maybe a couple of hours sleep, and I was exhausted by the time it was over. I told the doctor as much in the written evaluation, and again when they called for a follow-up appointment. Yet they insisted I was a good candidate for CPAP, and when I saw the doctor again, he couldn't find the results of the second study. There's no way I slept better the second night, and I have a feeling they didn't want the results to rule out the CPAP option.

My insurance paid for the machine and I still have it, but I'm reluctant to try and sleep again with that thing strapped to my head. I'm mostly venting here, but if anyone has suggestions on how to deal with the issues I mentioned above, I'm all ears.

Thanks!

Hi and welcome! You have come to the right place for help! Everyone here is willing to help. Some have a lot of experience - some are fairly new.
It would be a big help if you could fill in your profile (click on profile at the top of the page). Then we know what machine you have and what mask. Then we can be more help.
Anyway, getting used to using a cpap machine is NOT easy. It can sometimes take quite a while. You were commenting on how difficult you are finding it to exhale. If we knew your pressure, it would help and, also the kind of machine you have. Some of those available now have exhalation relief. There is C-Flex and A-Flex on some Respironics machines and EPR on some other machines. This feature really helps!!!
Getting the right mask and getting used to it is the MOST difficult part of adapting to using a cpap machine. It's - practice with a mask to see if you can get it fairly comfortable for you or maybe a different mask would be better. Many of us have several masks that we trade off for a change.
If you do not have a data capable machine with a smart card it would be good to get one if you can exchange the one you have (if it is not data capable). Often you can do that when you are starting out.
If you had a data capable machine you can get software and a reader to get daily data and there are lots of people on this forum that can help you interpret it.
Get back to us with you profile showing so we know what you are working with and I know there will be help here!
Hang in there!

Welcome to the group!

Yes, it takes awhile to get used to the equipment and the treatment. I had two nights in the lab as you did and found the same results in how I slept. For me it was due to their experimenting with all the settings for air flow and stuff. It's better now than it was, but I'm still adjusting.

As far as exhaling, my machine has a setting that backs off when I exhale. That makes a big difference. Don't feel like I'm fighting it. It'd be good to know what equipment you have and what the settings are so we can help. There are some really great people here ready to jump in and assist in your quest for a good night's sleep.

Hang in there. It gets better!

Hello & Welcome, JonnyT1971! Glad you found this forum--SO much useful info and SO many helpful people here!

Your initial experience are not uncommon, very similar to mine. After just a couple of nights on my first machine (ResMed Compact, I believe), I did a little research and KNEW I had to have the EPR feature that decreases the pressure automatically as we exhale. I managed to get my DME/Doc to exchange my machine for an S8 Elite within a week. I've been using that feature ever since. And, many (maybe most) of us removed the mask during sleep during when we started treatment. Hang in there, it does get better!

"You are getting sleepy . . ."

Hi JonnyT1971 from a previous post you may find this of interest regarding the ripping off the mask in the middle of the night.

SleepGuy wrote:For those who don't know me, I'm the person behind the pur-sleep products. I've had a lot of great help from people on the forum over the last year in helping to develop and improve the products.

Last month I ran a limited trial for people who were taking off their masks unconsciously in their sleep. Almost all of the people who participated reported either significant improvement or a resolution of their mask off issues (though I have yet to hear back from a few...).

I now have inventory for a new Basic Starter Pack (II) that includes three different aromatics than the last trial. I will provide up to 10 people experiencing "mask off" problems with a free Basic Starter Pack II (including domestic shipping). More information about the products can be found on the website.

The only thing I ask for in return is for feedback, good, bad, or otherwise, preferably on the forum but private feedback is fine.

If you would like to participate, please send me an email (no PMs please) to support@pursleep.com along with a note about why you feel like you quality as well as a mailing address. Personal information is used only for purposes of the trial. If you would like to try the original starter pack, please let me know as well. I reserve the right to decline trial applicants.

JonnyT1971,
Your experience sounds like mine. Sleep Docs and RT typically don't tell you about that not everyone takes to the cpap easily. It may take you a while to get used to it. I gave up on cpap from 2001 to just about 6 weeks ago, and my health suffered as a result. Listen to the folks on this forum, but by all means don't give up on your SA treatment.

JonnyT1971,

You're in good company with taking your mask off during the night. That will likely decrease as the mask becomes more familiar (which means the more you use it the quicker that can happen). It may even mean changing masks if the one you have isn't suitable for your face.

About the second study - it is to work out what is therapeutic as far as pressure and to determine if any other issues arise while on cpap. The first study was to determine if you have a need for cpap. The titration study wouldn't negate that initial diagnosis. There is criteria to be met during a titration to determine an effective pressure. Maybe the time you did sleep was enough for them to tell, but if I were you I'd let them know you were still waiting on them to find those last results and give you a copy. If you say to them surely they don't expect your insurance to pay for a test with no results, I bet they would be found. How did they determine your pressure without those results?

Again, sleeping poorly at the titration study is not unusual - I've had 3 and the first 2 were horrid. Last time I took my own mask and slept better. Even when this is all old hat, a mask change can make a difference.

A proverb from an oldtimer in more ways than one: To cross the goal line one must be headed in that direction.

Kathy

Jonny,

Welcome to CPAP, and especially to a great forum. This is a great place to find help, advice and encouragement. The most important thing is for you to fill out your profile including the equipment, meaning the type of CPAP machine and mask and humidifier you are using. Second, click on the big yellow light bulb on the top of the page and click on the links to the articles and threads found there and do some reading.

It is my humble opinion that everyone who goes on CPAP should have at least the first week they are on it off from work while they attempt to acclimate themselves to sleeping with this stuff strapped to your face blowing air into your lungs. If I had it to do over again, I would ceratinly do so, and I think I had a fairly easy time of it.

What you are struggling with is a big issue for lots of people who are starting out on CPAP, and causes lots of them to not continue with their therapy, so do not let this happen to you. As others have said, if you have a machine with EPR (Exhalation Pressure Relief), which is found on the better Resmed models like the Elite, or A-Flex which is a similar feature found in some Resprionics model CPAPs, these make it easier to breathe out, as they detect when you are starting to exhale and reduce the pressure to make it easier. If your machine does not have one of these features, you should consider taking it back to your DME or health care equipment provider and ask for one that does have it, as it seems that you are struggling with this. At least that is what I would do. Unfortunately, some DMEs hand out cheaper machines with less features to enhance their profits, while others are perhaps ignorant of its benefits. Do not hesitate to talk to your Doc and tell him that you are struggling, and if need be ask him to prescribe a machine with one of these features. Do not let the DME tell you that you do not need it. It is your therapy and you must be in charge of it. Be insistent.

Another feature of the better machines is that they are what is called Data Capable. What that means is that each day you can find out how well or efficiently you slept the night before by reviewing information that your machine has stored while you slept. At a minimum, your machine should tell you what your leak rate was, your pressure, and the average number of apneas and hypopneas (breathing stoppages and restrictions) you had per hour through the night. There is also software you can get that will enable you download this information to your home computer, which can be very helpful and instructive. I cannot stress how helpful access to this information can be to the success of your treatment. Not having it is like trying to drive your car to the store at night with no street lights using only your parking lights and only having one eye open. Its still possible to get there, but with access to this information your headlights are on, the sun is out and both eyes are open.

Masks are very specific to the individual, and someday someone is going to make a bucket of money when they develop the "perfect" CPAP mask that fits everyone, never leaks or comes off your face, and doesn't leave strap marks. I still remember looking at the nasal pillows the tech at my sleep study brought in and thinking, "you want me to put that in my nose?" I never was able to sleep with them, and had to switch to a nasal mask. Again, I would ask my DME to let me try some different types of masks. Different places have different exchange policies, but most will let you try one for at least a week. As you are reading through the threads, look at the different masks people are using and search the site for info on masks or interfaces that look interesting to you. Also look for different ways that people have "tweaked" their masks to make them work. Like I said, I don't use nasal pillows, but I have read lots of posts by people who do use them and add soft straps or panty hose at strategic locations to hold them in place through the night. You can also try swapping masks with others on the forum or buying them on Cpapauction for reduced prices. And our host, CPAP.com, has a great selection at reasonable prices, with return insurance you can purchase if you like.

The very, absolutely, most important thing is that you stay with it and do not let yourself get derailed from using your machine as much as you can every single night. Some people only start out with a few hours a night on CPAP and work their way up from there. Some are not able to get a better machine and must learn to adapt themselves to the pressure. Everyone has problems either in the beginning or along the way, so you are never alone in this area. Feel free to vent, rant, complain or just plain whine on the forum. For any problem that you have, someone here has almost certainly had it too and can offer help and support. There are some really smart and experianced and kind people here, so take advantage of it, and Good Luck!

Wow, I didn't expect so many responses so quickly! I appreciate all the suggestions and words of encouragement. I'll probably stick with the nasal pillow mask, since that was the most bearable of the bunch. I wasn't crazy about the full face mask, and the nasal only mask didn't fit well on my non-petite nose. I have to actually get a new plastic water filling thingy for my machine before I try again, and then I can fill out my profile with all my CPAP details. I don't know offhand, but I'm pretty sure my machine doesn't decrease pressure on the exhale. But that sounds like it would be tremendously helpful. Once I have my machine up and running again, I'll be in a better position to read the posts and see what will work. Thanks again for all the input!