Thank you again for your great responses.
Here is my current update - last night I did a second home sleep study, because I took medication during the first one that may or may not have impacted the results. So I didn't use the CPAP machine, but it was another horrible restless night of waking up throughout. I'm hoping that I can get my CPAP setup to work, because evidently I'm not sleeping so great without it either. I now have a Monday morning appointment with a sleep specialist, I plan on bringing my OSCAR data, the results of my first sleep study, and the machine itself, and I am hoping for the best but preparing to handle this on my own and with the help of individuals such as yourself. My next sleep doctor appointment, the original one that I made, is for late October. I am sincerely hoping that one of these doctors can help tweak settings on my machine, make some mask recommendations, and talk through some options and ideas to help me sleep in general, from a medical standpoint, that's all that I'm really looking for.
You say "intelligently" like I should have never switched over to straight CPAP? This is the challenge, I'm running into so many great people on this board and another one, everyone seems to know their stuff except me, and there are a lot of different opinions. I can assure you that the idea to switch from APAP to CPAP was not mine. As far as EPR goes, if I turned it back on, I think that my respiratory therapist had set it for 3, not 2. Is there a big difference between those two values? I will continue to keep ramp off, it makes no sense to me in terms of making me more comfortable or addressing actual events anyway.I would suggest turning the RAMP off since you (intelligently) plan on going back to APAP with a pressure range of 4-20cm. But I would turn EPR back on and set it to 2, so that the only that gets changed for a night or two is just that there won't be a "RAMP" artificially keeping the pressure at 4cm for an extended period of time.
You are the second person to ask me this line of questions, I can see how important the answers are. And I'm going to frustrate both you and I with my response.I had the full mask on last night, and one hour and change after falling asleep, I woke up and literally could not breathe, ripped the mask off, turned of the machine
This is an important question so answer it: When you say you literally could not breathe, do you mean you could not exhale comfortably and completely? Or do you mean you could not inhale comfortably and completely?
The answer to this question is super-significant: If you sometimes feel like the machine is smothering you because you cannot exhale comfortably and completely, then the best way of addressing that problem is through using EPR (and most likely setting EPR = 3).
But if you sometimes feel like the machine is smothering you because you cannot inhale comfortably and completely then the fix may be a combination of increasing the minimum pressure setting and turning EPR down or off. (Which suggestion makes the most sense depends a bit on exactly how it feels like the machine is messing with your inhalations.
Also worth telling us even though you had a horrible, disastrous night with the settings that you tried last night: When you were awake at the beginning of the night, did you feel uncomfortable exhaling or inhaling? If so, which gave you the bigger problem. You also said that at 8cm of pressure you were having trouble keeping your mouth shut. That would point to EPR being potentially useful for you.
I just don't know.
What seems to be bothering me is the flow of air through the mask in general, as I perceive it just sitting there with the increased pressure (when it was set to 8 in CPAP mode last night, and as it woke me up in APAP mode every other night). I've only felt one time that I had a hard time exhaling, and that might have been when I turned the machine off before I yanked the mask off of my face. All of these events are happening in the middle of the night, to someone who has not had sleep and can't get any sleep, they almost happen in a dream that I am waking up from. It is very hard to pay attention to the details of what is happening as it's happening. I don't feel a struggle to breath in with the mask on and air flowing. I don't feel a struggle to exhale against the air flow. It's just a generally uncomfortable feeling. Up until last night with CPAP and a pressure of 8, I could fall asleep comfortably, and then every hour or so like clockwork, I would wake up to a rush of air in and around the mask, but I didn't perceive a problem either inhaling or exhaling at that point. I don't mean to complicate this discussion or sound ridiculous, but the answer to your question is either "I don't know", "I haven't figured it out yet", or "none of the above". Sorry.
Keep this in mind: Most doctors and most respiratory therapists have never put a CPAP mask on their nose and turned the machine on and left it on for more than 15-20 minutes while wide awake
I already have experienced this. The one individual who was almost helpful was a manager at the equipment company, and the only reason why she was almost helpful is that she is an actual CPAP user as well as a manager. I would not doubt that most doctors and individuals involved in this industry have no real life experience with using a CPAP machine and mask. Again, not looking for them to solve world peace on my behalf. Take a look at my data, give me some starter settings, make some mask recommendations, help set expectations, offer up what if any options are available, and send me on my way.
I am most definitely a male, and I most definitely got the pat on the head, twice, from the original respiratory therapist, an older woman. I detest the pat on the head. Probably the most frustrating person of all that I have had to deal with. "If you'll just let me mansplain this to you, even though you are clearly a man, you won't have to ask any more of your silly questions".But I do feel that there is a real risk as a new patient to all of this, if I continue trying to play doctor myself using information exclusively on these boards. I see an absolute need to keep an open mind, listen to everyone on these boards, be my own champion, and do my own due diligence on all of this. Keep this in mind: All the CPAP is doing is blowing a bit of extra air down your windpipe. It's actually a pretty benign therapy, and it's not rocket science.
Given what you said about your respiratory therapist asking you what the "average pressure level" on your APAP was, I strongly suspect that you were prescribed the APAP running 4-20cm as a way of titrating you, rather than putting you in a lab and having a sleep tech (different from a respiratory therapist) manually titrate you by watching what was going on and adjusting the pressure in response to what was going on. It's become pretty common these days for sleep docs to just prescribe an APAP with a pressure range of 4-20 instead of sending recently diagnosed folks (back) to the sleep lab, and as uncomfortable as in-lab sleep tests are, it's not necessarily a bad way to titrate folks starting out on CPAP therapy. Unfortunately, as you have found out, most of the people in the process treat you like you're a mushroom---they keep you in the dark, and if you're female they give you the proverbial pat on the head and say you don't need to worry your little brain about what's happening.
You could make the argument to change the range to something like 7-20 or 8-20, and I would understand and be open to that. Ramp makes no sense to me, I don't think that I need it, so I am keeping that off. Same with EPR, for now. I understand the pressure/EPR trade off, but I honestly can't see messing around with that unless I've got good solid data and a professional involved.
Makes sense to me, seriously thinking about turning EPR back on, but do I go with your value of 2, or the RT's value of 3?Again, I think you're overthinking the EPR "trade off". Most sleep docs and RTs are going to say that if using EPR makes it easier for you to sleep, then use it. Yes, there's a small chance that EPR = 3 can cause some real CAs to happen. But for most people, that doesn't happen and for most people, using EPR does not significantly increase the AHI and it can significantly increase the patient's comfort, and hence maximize the chance that they will eventually become a happy PAPer.
In general, I can't see CPAP (vs. APAP) working for me, this notion of keeping the air pressure on a steady enough number to address any events proactively, because I don't see me falling or staying asleep with that constant flow of air at the necessary pressure (7-8?). And if I lower that number below 7-8 so I can comfortably fall and stay asleep, then the device probably won't handle any events, so it defeats the whole purpose right?
Again, next settings are looking like: Auto (APAP), pressure 4-20, ramp off, and EPR either 2 or 3. I'm just uncomfortable doing this on my own from a safety standpoint. It's not going to make me sleep any worse, and it could help me sleep better. I just want to be sure it's safe. That's where doctors come in right?There's lots of potential trade offs.
1) What's driving most of your pressure increases seems to be flow limitations rather than obstructive events. It's possible that at 6cm of pressure most of your obstructive apneas and hypopneas will be prevented, but the residual flow limitations will still be present. Whether that's an issue for how well you sleep is not something a sleep doc (or anybody else) can predict.
2) You may be able to get to sleep just fine with a constant pressure of 7cm with EPR = 3. We just don't know and neither do you.
3) You may be better off going back to using APAP with a range of 4-20 and you may learn to not arouse because of pressure increases. Only time will tell.
I slept better for a few nights with the original APAP settings, the nasal mask, and a CPAP pillow, and "better" meaning 5 hours with tons of interruptions, but I did sleep. So that's what I will continue trying to get to work for me, until I get to see an actual sleep doctor who might be able to make some more specific recommendations or changes to my treatment.
Yeah, I've used sleeping medication in the past, when my sleep was far better than it is now. I definitely got comfortable and used to itI'll give you this heads up: When a new CPAP tells a sleep doc that they are having "tons of interruptions" to their sleep while using the APAP/CPAP, the typical sleep doc is going ask whether you would like to have a script for short term use of a sleeping pill to get you over the hump.
There's not a right/wrong answer to that suggestion. Some people are happy to try prescription sleeping pills and it can often make a difference in reducing the number of nighttime wakes. Other people would really rather not take a prescription sleeping pill for a lot of different reasons, including a fear that they'll get hooked on them long term and not be able to sleep without them. You'll have to figure out whether you're willing to try prescription sleeping pills if a sleep doc suggests them as a way to make your sleep with the machine more continuous.
I would probably have pushed for that with my GP a while ago except that I know that it's not a good thing for me as far as habit forming, plus I find in general just about anything that you take to help you sleep makes you feel like **** the next day. My mother was in medicine and super smart about this stuff, she always said that drugged sleep isn't really restful sleep, you're not getting the full value of sleep when you take something to get there. And for me, I have no problem falling asleep, I just have problems staying asleep. I often use chamomile as a tea or supplement, I used melatonin in the past but no longer, beyond that I've use medicines on and off label to get to sleep and stay asleep, and again, I find that it makes you pay for it the next day. At this point I'd like to try and do this as naturally as possible, and get back to some real solid sleep, but I am not putting an "x" on the sleeping medications door just yet. I don't think that I have had a solid night's sleep in months at this point. Everything is now affected, others rely on me, it's no joke, I need some sleep. So at some point if I can't get it through CPAP or some other means, I'm going to ask for the meds, they won't have to offer it. I would not doubt that there are more leaks with the added pressure. I sometimes sense movement of the mask around my face when I woke up during one of these events, either the discomfort had me unknowingly pushing the mask around or whatever. The issue with that is that if I go too tight on the mask, I've been feeling that discomfort. I can keep switching up mouthpieces on my various masks but it looks like I'm on that borderline medium size, for the two masks I own. Small is too small and large will leak like a sieve. I can use the straps on both masks to tighten up but then I will feel that on top of the air flow and noise discomfort. I'm hoping that the new full face mask arriving Monday (supposedly) will give me another option. The nasal mask is by far the most comfortable, but I think some component of this is my mouth opening during sleep. Chin straps don't work for me, I'm not taping my mouth either. Maybe the right fitting full face mask and appropriate settings will work. The respiratory therapist did test for leaks on my nasal mask setup with the medium mouthpiece and did not see any. I wish that I knew what she did to test so that I could repeat that process. At this point, I put the masks on, I move them around for minimum noise and external air flow, on the full face mask I will pull the mask off slightly to create a leak, then put it back on and see if goes away. Then I will adjust all of the relevant head gear straps, making them snug but not tight. And that's that.The only thing that stands out in this data is that your leaks look a bit worse.
Given the disaster, I would suggest that you go back to APAP 4-20. I would leave the RAMP off, but I would turn EPR = 2 even though you won't feel any exhalation relief until the pressure starts to increase to 5 cm, and you won't get the full benefit until the pressure reaches 6cm.
I would also think about the leaks. Even though there are some big ones, they're not lasting long enough for Mr. Red Frowny Face to show up or for MyAir to say your leaks are bad. But given that you report numerous sleep interruptions, we have to consider that those leaks may be what is waking you up or keeping you awake after you wake up. You might want to review the fitting instructions for your mask and you might want to make sure that you fit the mask while lying down in your preferred sleep position.
I mean at some point, this is either going to work for me and become part of my life or it goes back to the company and I live with sleep apnea and without a CPAP device. It's been several weeks. I was feeling like I was getting closer to a restful night a week and change ago, last few nights have been the worst. We've got some important stuff going on tomorrow, so I'm probably going to skip CPAP again tonight. Assuming that I resume CPAP tomorrow night, I will go back to the settings that I was at last week, with or without your EPR adjustment, using the nasal mask and CPAP pillow, and hope for the best until I see doctor #1 on Monday morning. I feel very lucky to have gotten that appointment, I called just in time for a cancellation, his next was several weeks out. These guys are very popular witch doctors evidently.
Thank you and have a very nice weekend robysue1.