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Therapy is not working!!!
09-24-2015, 07:58 PM
Opalrose, my AHI has been about 7 to 9. As for increasing the pressure, I have adjusted it several times, always returning it to the original setting, after no success. I honestly did not think this was going to be that hard to do. You said the breathing with nasal pillows should be natural. What do you mean by that? I really am very close to giving up. This has been one of the most emotionally wrenching things I have experienced. My sleep is awful when I try to use the machine.
09-24-2015, 08:07 PM
What is Sleepyhead and how do you use it?
Here's the link:
This is the same as the link at the top of the page
09-24-2015, 08:38 PM
(09-24-2015, 07:58 PM)erossco Wrote: Opalrose, my AHI has been about 7 to 9. As for increasing the pressure, I have adjusted it several times, always returning it to the original setting, after no success. I honestly did not think this was going to be that hard to do. You said the breathing with nasal pillows should be natural. What do you mean by that? I really am very close to giving up. This has been one of the most emotionally wrenching things I have experienced. My sleep is awful when I try to use the machine.
Your profile says your pressure setting is 5-20. But you state that you have adjusted it many times. Without monitoring or using software, what gauge were you using to change your pressure. I ask, because the norm would be to set your minimum pressure at 2 below your 90% pressure, and your max setting should be set higher that the 90% number, or can be left at 20.
You should be able to get your AHI below 5 with the correct settings. If you can download the SLeepyhead Software, and then import the information from your SD card, then we can take a look at your graphs and see what is going on. I think the link for sleepyhead was given to you in a prior post.
In the meantime, I would raise that minimum setting to 6 and set EPR to 2. That should help you when you exhale.
Try the above before giving up on nasal pillow mask.
There are a lot of other masks available. You could try a nasal mask.
Do what you have to do to make it work for you.
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09-25-2015, 09:38 AM
With nasal pillows you often need to pull the mask away from the nose after air is flowing to allow the pillows to "fluff" up. I find if I forget it's much harder to breath as the cushion is collapsed and sometimes blocks the nostrils.
09-25-2015, 04:24 PM
(09-24-2015, 07:58 PM)erossco Wrote: Opalrose, my AHI has been about 7 to 9. As for increasing the pressure, I have adjusted it several times, always returning it to the original setting, after no success.Can you also tell us what the rest of data showing (further down the sleep report) ... hours, AHI, total AI, central AI, pressure, leak
You can set "period" to "1 day" to see last night data, default set on 1 month
Period options ... 1 day / 1 week / 1 month / 3 months / 6 months / 1 year
09-26-2015, 03:07 PM
erossco, when CPAP therapy doesn't get off to a great start you have to be willing to take a systematic and often very detailed approach to troubleshooting in order to make it work for you. So far we're getting only limited information from you about what's been happening.
Trying different pressure settings only makes sense if you're basing those changes on data provided by the machine and giving the changes adequate time before drawing any conclusions. We usually don't talk about changing pressures unless we have seen some SleepyHead reports that point to the need for different pressures.
If you are willing to get SleepyHead up and running there's a lot we can help you with. It may or may not have made sense to change your pressure(s) depending on what type of apnea events you've been having. For example, we don't increase the pressure if all or most of the events are central or "clear airway" because pressure doesn't treat those events.
I encourage you to start using SleepyHead now and posting reports here -- Even one screenshot can show us what pressure changes you've made and for how long, whether you're using exhale relief, what your leak numbers have been, and more. Mask fit/comfort is critical too -- at the same time, if therapy is ineffective and sleep is a mess, it may be harder to really evaluate the 'goodness-of-fit' of the mask.
09-29-2015, 08:45 PM
I do not know what medium and 95% pressure is. I went to pick up the machine February of this year. She fit me with the mask and said good luck. That was it. I do not know if the mask fits properly or not. That is partially why I went to the nasal pillows. Thought they would be easier to use since I am a nose breather. I did try practicing with them about an hour before I went to bed. That helped a little.
09-29-2015, 08:56 PM
After reading several posts on here, I realize most people who write in have access to their initial sleep study. I was never given that. I had a home sleep study done. The results were mailed to my doctor, who in turn referred me to Lincare. I have not seen any results whatsoever.
09-29-2015, 10:30 PM
(09-29-2015, 08:56 PM)erossco Wrote: After reading several posts on here, I realize most people who write in have access to their initial sleep study. I was never given that. I had a home sleep study done. The results were mailed to my doctor, who in turn referred me to Lincare. I have not seen any results whatsoever.
Ah, ok. Your sleep study report is part of your medical records. You can get a copy of the report from your doctor -- you're legally entitled to it, you just have to request it. When you do that also request a copy of your CPAP prescription -- that too is part of your medical record.
Meantime, I encourage you to download SleepyHead and start posting screenshots of your data. It will show us all the information we're asking questions about (leak, median and 95% pressure, etc.) and will likely also give us some ideas about whether and how to adjust the pressure settings.
Your experience is pretty typical and it's the reason forums like this exist. Most of us got minimal help from the medical professionals involved, and less-than-minimal help from the DME that supplies the equipment. But if you stick around and if you're willing to put in some time there's a good chance you can get this crazy therapy working for you.
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