Struggling with CPAP treatment

[arronandrews]

I was excited after my second sleep study because I noticed after using the cpap at the lab that I was breathing better, felt more rested and had more energy. Then I got my auto adjusting cpap at home and it doesn't make me feel any better than not using it. I have talked with my sleep specialist and so far we have turned off the settling timer, adusted my starting level closer to my range of 9-14, I was using a nasal mask so he switched me to nasal pillows which burned my nose just like they did in the lab (money wasted ). I am just fed up because he showed me the data from my machine and it was "working normally" and shows the therapy is "helping" my OSA, but I am now at a point I wake up with it off of my face and sometimes disassembeled I think because It isn't benefiting me so I get rid of it in my sleep.
Has anyone else had similar issues and found a solution? The next step is to do anyother sleep study, but I am worried it will be okay and he will just tell me to keep using my machine which doesn't help me. I am back to almost falling asleep at work, so I am back at square one, just now I have a CPAP machine that doesn't do any good.

[BlackSpinner]

Give us a little help. What is the machine you are using? Which mask exactly?

Lots of people have had your issues and there are lots of different solutions.

There is software available where you can see the data - look at the first thread called "Pugsy's pointers" for more details.

[arronandrews]

I am using a ResMed S8 AutoSet Vantage™ EPR™ Auto CPAP Machine. Started with a Fisher & Paykel nasal mask. Now I am trying a GoLife For Men Nasal Pillow CPAP Mask with Headgear Version 2 by Philips Respironics.

[Krelvin]

When was your last sleep study? An S8 its fairly old.

[PoolQ]

I will have been on CPAP two weeks tomorrow and I have tweaked almost every setting, some did nothing (for me) and others did a lot. From my very limited experience what you will need to tweak will depend on how sensitive you are to what you change.

There is inhale and exhale pressure, on my machine I increased the EPR from default 2 to 3 and then I stopped feeling like my nose was always plugged up.
I played with the humidity and for me that did not seem to make much of a difference
I have a heated hose and the auto setting was way too warm for me, it's set at 68 degrees now and seems good.
I turned off the delay for it to come up to full pressure
I have not adjusted the low and high pressure settings, yet.

I am still not "happy" with my CPAP, but I no longer wake up and rip the mask off with a feeling of not being able to breath.
Look at you plots in sleephead, get to know what is going on and when changes happen, I am still figuring this part out. I don't know what I don't know about the plots.
I have not talked to my Doc since before the sleep study. Next appointment is in two more weeks.

I think CPAP works and is worth the effort, I don't think a Doc can look at the charts and tell me what to do that is sure to work. I think most of the issues (so far) have been things that I need to get used to and figure out
But then again, remember " I don't know what I don't know" about this either

Hang in there. This place has lots of people that know what I don't.

[pettyfan45]

I am using a ResMed S8 AutoSet Vantage™ EPR™ Auto CPAP Machine. Started with a Fisher & Paykel nasal mask. Now I am trying a GoLife For Men Nasal Pillow CPAP Mask with Headgear Version 2 by Philips Respironics.

Your sigature says you have been on APAP since 2014. Did you get that machine on insurance from a DME or did you buy that out of pocket from Craigslist or something like that?

[arronandrews]

I had to pay out of pocket for my machine. I found the CPAP assistant program from the Sleep Apnea Association. Would the machine be that old that it isn't as effective?

[pettyfan45]

Probably, that machine is about 10 years old resmed no longer makes parts for it, I suggest you should look into a newer machine like a S9 (if you can) and have the S8 as a backup (a crapy backup machine is better than no backup ). Do you even have insurance, because that would help you out a lot.

[jab1972]

A few things:

1. The S8 is an older machine, but if it still works then I would focus on improving your use/treatment efficacy rather than getting a new machine right away.

2. When you say you are taking the mask off because it isn't working, what are you feeling in that moment? Are you out of breath, or congested, or feeling panicked? There can be a lot of reasons we feel the need to take off our masks that don't have anything to do with whether the treatment is working.

3. Perhaps most importantly, what do your numbers say? The S8 is a data compatible machine that allows you to check on how your apnea numbers are responding without doing another sleep study. They are the best source of information on how well your apnea is being treated, and may provide a clue about what is happening to you at night.

[arronandrews]

I don't even know that I take off my mask off until I wake up and it is no longer on my face.

According to the data they pulled, when the machine was operating it put me in normal ranges. Only suggest from that appointment was to switch masks, but that didn't change anything.

I tried so hard to explain how greatly different the therapy at the center was verious at home. His only response was that I just have to use it. I go to bed with my mask on every night. I wake up and the mask is off and the machine is off so I put the mask back on and turn the cpap on. I have even woken up to me complete taking apart everything like I was going to clean it. I have no memory or similar dream to that nor have an answer to how that happen

[HoseCrusher]

OK, here is a plan...

Go to the store and pick up a pair of nylons.

When you get ready for bed, pull a nylon over your head. Make believe you are going to hold up a bank and don't want anyone to recognize you.

Next you need a pair of socks. After you turn your machine on, put the socks on your hands.

As you are drifting off to sleep, visualize that you are a prisoner and are being tortured by sleep depravation. They don't want to kill you, just tortur you. In your best interests they let you use your machine at night.

Still with me...?

OK, a little extreme so let's see if it can be toned down a little. The idea is to make it difficult to take your mask off.

Find some sticky tape. After you put your mask on, tape the headgear to your skin. This way when you go to pull it off, the tape will pull at your skin and cause you to wake up and wonder what the ____ is going on. I still like the idea of wearing socks on your hands. This makes it more difficult to grab the mask.

"They" whoever they are, aren't struggling with sleep disordered breathing and it sounds like they are not offering much help. Let's focus on "You" and figure out ways to take charge of your therapy.

Once you have things figured out, you can share what worked for you with the "They" if you are so inclined, or not... It's "Us" now. "They" don't seem to be of much help.

[palerider]

OK, here is a plan...

Go to the store and pick up a pair of nylons.

When you get ready for bed, pull a nylon over your head. Make believe you are going to hold up a bank and don't want anyone to recognize you.

Next you need a pair of socks. After you turn your machine on, put the socks on your hands.

As you are drifting off to sleep, visualize that you are a prisoner and are being tortured by sleep depravation. They don't want to kill you, just torture you. In your best interests they let you use your machine at night.

Find some sticky tape. After you put your mask on, tape the headgear to your skin. This way when you go to pull it off, the tape will pull at your skin and cause you to wake up and wonder what the ____ is going on. I still like the idea of wearing socks on your hands. This makes it more difficult to grab the mask.

Keep your shoulder to the wheel, your ear to the ground, your eye on the ball, and your nose to the grindstone. Now, try working in that position.

but, seriously... good ideas. don't think I've heard of the bank robber technique before... I like it.

[Sonya]

I found the tape really helped to keep the mask on my face in the beginning. I was in the hospital for a procedure and they sent me home with this roll of medical tape that breaks off into 1.5" strips. I would just pull off two and put them where the straps cross my cheeks.

When I would try to take off the mask in my sleep, the tape was enough to wake me up and remind me to keep it on. Sometimes I was tempted to just rip it all off and get some damned sleep, but eventually I broke through and was able to keep it on all night.

Hang in there! It does become easier.