My sleep has not improved despite CPAP

tomcatsf wrote:I'm getting conflicting information on the pressure setting in this forum which is confusing me. One person says 4 is intolerably high another says I need to go much higher than that. They experimented with all of that in my second sleep test. The machine was set at the prescribed setting when it arrived. I would not and cannot tamper with it. I would imagine they would have changed my prescription after the second sleep test if a higher setting would have given me more benefit. Please read all my postings especially my reaction to the second sleep test above. Again they have not decided to change my pressure setting even after the second sleep test. I am reasonably intelligent but a lot of this information is just not being communicated to me by my sleep team.

4 is the minimum pressure any machine can give. For most people it is a nasty setting that makes them feel starved for air.

This is like diabetes. A lab setting is one thing, every day is something else. There is software available to show your every breathe. There is absolutely no reason not to take advantage of it and adjust your settings as needed - IT IS ONLY AIR. You can't even blow up a balloon with the pressure.
Most staff at these places make used car sales men look like honest Eds with phd's. There is no guarantee they didn't just leave it a the factory settings of 4-20. The only way to make this therapy work for many people is to take total control over it. IT IS YOUR LIFE.

tomcatsf wrote:I'm getting conflicting information on the pressure setting in this forum which is confusing me. One person says 4 is intolerably high another says I need to go much higher than that. They experimented with all of that in my second sleep test. The machine was set at the prescribed setting when it arrived. I would not and cannot tamper with it. I would imagine they would have changed my prescription after the second sleep test if a higher setting would have given me more benefit. Please read all my postings especially my reaction to the second sleep test above. Again they have not decided to change my pressure setting even after the second sleep test. I am reasonably intelligent but a lot of this information is just not being communicated to me by my sleep team.

tomcat, 4 is low. However people have worded things in their posts, a pressure of 4 is intolerably LOW for most people. When someone referred to the feeing of suffocating, they were saying that 4 feels like not enough air coming in to breathe comfortably. Sorry for the confusion.

You don't need to "tamper" with anything, but if you want to just see your current pressure settings please take a look at that video I linked to in my previous post. Just looking does not change anything. And this will help you get the information that your sleep team is not communicating to you. Then, if you want to communicate the information to us, we will help you understand what's happening with your sleep at your current settings.

Your machine choice that you should make in the equipment drop down menu for your model 560 machine.
PR System One 60 Series Auto CPAP
Your humidifier choice would then be
PR System One 60 Series Heated Tube Humidifier with heated Tube....you may or may not have the heated hose because it is and option but that is the only choice that you can make with the equipment menu choices.

Your machine won't go any lower than 4 cm...so that is most likely the starting pressure if you are in APAP mode.
Some people find that the pressures of 4 or 5 are too low (not too high) because there simply isn't much air to be perceived as moving.
If you are comfortable at that pressure then that's the important thing.

Your machine is a full data machine...you have free easy to obtain and use software. See the links in my signature for more explanation.

I can understand your not wanting to change anything..that's fine but maybe you should at least figure out if your therapy is at least optimal on paper and you need to get and use the software....or force your medical team to do it and explain it to you.
Most often they look at how many hours you use the machine and the standard response to every problem is "give it time".
Maybe it isn't pressure that is the problem..maybe it's leaks...or fragmented sleep or short hours of sleep.
There is more to bad sleep than just sleep apnea too.

There's a lot more to slapping the mask on the face and waking up feeling like a new person then people want to think.
If your medical team won't help...you can at least learn to understand what your machine is recording and whether you want to do something about it is up to you.

I always say start with the machine's data...gotta start from somewhere...make sure that the therapy is at least optimal on paper and go from there in the work needed to maybe figure out what is going on.

tomcatsf wrote:When I had the very uncomfortable last sleep test they pushed the pressure to 4 and I found it intolerable. I believe the machine adjusts automatically when I stop breathing and returns to normal when I start breathing again. Again a lot of this information isn't being communicated to me and I am new to this and don't know what questions to ask.

4 is the lowest setting which is also too low for most people as it feels suffocating. It is also unlikely to actually prevent any apnea events. Most people need more pressure to get actual treatment. Even if your machine is set to a range, if it keeps going down to 4 until you need it, then it will take too long to get up to what you need, so it won't do much good. Ideally, a machine is set with a minimum that is useful for most of the night and has a range that allows it to go up as needed without it taking too long to get there.

As an example, my machine is set for 11-17. MOst of the night, it stays in the 11-13 range. There may be 2-5 spikes up to 15 and some nights, a spike or two up to 16 something. It usually spends less than 10 minutes a night above 14. My untreated ahi (average events per hour) was 79. With my machine at these settings, it is rarely over 2 and usually under 1. If my machine were set 4- something, (assuming I could sleep with pressure that low), my machine would spend most of the night going up and down. My ahi would be much higher as it would be unable to prevent a lot of events. And the pressure ramping up over such a huge range would be disturbing to my sleep. By keeping a much tighter range, it is much more effective and less bothersome.

You really need to get a summary of your sleep study. It should be about 3 pages, showing your untreated and treated numbers, some graphs, etc.

Here is what mine looks like:

http://www.zoocrewphoto.com/apap.htm

It also includes a report from one my nights using the machine.

tomcat,

First, you are NOT the only person who has seen their sleep deteriorate after being put on CPAP. I've had a three year off and on battle with insomnia right from the start since being put on CPAP in September 2010.

Second, contrary to what most people say, more air pressure does NOT always resolve the discomfort and insomnia problems. More air makes me more miserable. More air does help some people, but bumping up the pressure is not a panacea. It may work for you. Or it may make you more miserable.

So let's try to tease some things out:

Are you currently trying to use your PAP or not?

You say that on the sleep test when they increased the pressure you found it "intolerable." Intolerable in what way? Did you feel as though too much air was being forced down your throat? Or did you feel you were suffocating because of a lack of air?

When you try to wear your mask at home with your machine turned on, how do you find it intolerable? Do you feel like you are being forced to breathe in too much air??? Or do you feel like you are suffocating because there's not enough air to breathe? They are very different sensations, but they are equally intolerable. (A side note: If you feel like you are being forced to breathe in too much air at your current pressure setting of 4cm, increasing the pressure will increase the discomfort rather than alleviate it.)

Do you have comfort-related issues that are separate from the "I can't tolerate the pressure" issue"? If so, what are they? Be as specific as possible and don't worry about how long the list of possible issues turns out to be.

What's your current sleep situation look like? Bedtime is??? Wake up time is?? Latency to sleep??? Estimated total sleep time during the night is???? I need to have some idea as to how bad the current situation is before I can make any meaningful suggestions on what self-help things to try or what kinds of things you might want to talk to the docs about.