New here. Do you change your own pressures?

Bookbear · Post by **Bookbear** » Fri Nov 02, 2007 7:02 pm

No problem, Panhandler!

Country4ever · Post by **Country4ever** » Fri Nov 02, 2007 7:18 pm

Thanks Panhandler........then 1cm it is.

RosemaryB · Post by **RosemaryB** » Fri Nov 02, 2007 7:47 pm

My (dear) GP was the one who detected my OSA and had me tested, after a previous doctor had convinced me I couldn't have it. He didn't know a lot about the machines or the software, but he is in favor of his patients being involved in their treatment. When I asked him for a data-capable auto, and explained my reasons he was happy to write the script. I explained to him that I'd be bringing him some printouts to show him how the therapy was going he said that would be great.

Once I got the machine I adjusted pressures quite a bit (but gradually), with the help of the good people on this forum. My results were great. Since I was mistitrated at 5 (my optimal pressure is 9), this was important. I had a number of good looking graphs that clearly showed the success I was having. I took them to him and he was very interested. He had me show them to a resident he was training and so I sat with her for over 1/2 an hour explaining the graphs. She asked a lot of good questions.

I do think my GP is an exceptional one. Also, he's not a sleep doctor, so wouldn't have much ego-brusing in a patient learning more about the technology of sleep apnea than he knows. I don't think the sleep docs know much about the machine end, though. They rely on the DMEs for that part .

However, you could try something similar by keeping careful records or graphs of your daily progress. Then you could select the records that most clearly show what you are trying to show him. (IOW, don't take in the whole pile and expect him to make sense of it). If he gave you that good machine, maybe he will be glad that you are making good use of it.
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CPAPopedia Keywords Contained In This Post (Click For Definition): auto

mindy · Post by **mindy** » Sat Nov 03, 2007 6:08 am

I was in a similar situation with my APAP when I changed pressures. I debated how to handle it with my sleep doc and decided on the following:

1. I decided *not* to mention anyone else
2. I brought in a print out of the overall compliance and summary events, pressures, etc. (which I know they can get from the Smart card)
3. I brought in some EncorePro Analyzer graphs
4. I showed them to my sleep doc and she was wow'd by the EPA graphs. As we were going over them I mentioned that I had increased my pressure range a bit to see what would happen. She didn't respond negatively!
5. Then I asked her opinion about further changes.

It went much better than I expected. I don't know what she was thinking but she treated me with respect and I decided she is a "keeper". If she hadn't responded well, I would have changed docs.

I have multiple other medical conditions and have found that I just don't get along with some docs and do with others. (And they have some of the same issues with patients!). There's nothing wrong with deciding that the match between you and your doc is not a good one.

Good luck and try not to stress. You've got options!

Mindy

Robin_ · Post by **Robin_** » Sat Nov 03, 2007 8:11 am

Country4ever wrote: Question about Ramp......that's just how the pressure starts out low and increases over a set amount of time, so we don't feel so much pressure at the beginning, right? I think its called "settling" on my machine? Why would people not want that?

I think it's simply a matter of choice. Not everyone needs ramp time, especially if their normal setting isn't too high. I usually use it when I first go to bed, but if I get up in the middle of the night, I won't bother with it when I put the mask back on. By then, I'm already aclimated to the full prressure.

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CPAPopedia Keywords Contained In This Post (Click For Definition): Ramp

Country4ever · Post by **Country4ever** » Sat Nov 03, 2007 9:32 am

Once again, great suggestions from everyone! A million thanks.
I discovered that on my machine, I can go in increments of .2cm changes. So I've gone from 4 to 4.6, but the high pressure I went from 8 to 9.
Am I correct in thinking that if I want to prevent some of those hypopneas, it more important to go up on the bottom number...Since most of my upper numbers during the night are under 8.
If I go up to 9, it won't even be used, if I'm usually lower than that, right? Is this correct thinking?

Treesap · Post by **Treesap** » Sat Nov 03, 2007 10:37 am

If your machine is in apap mode, your pressure can be set to go higher. It only reaches that height if you need it. Mine is set from 6 to 15. My nightly average never goes above 11. However it could go up to 15 for a short period of time if I needed it to. I don't have the software, so I don't know what happens every moment or the night. I just see the average numbers each morning after I get up.

I do use the settling on my machine because it helps me to fall asleep better. I only set mine for 10 minutes since I can fall asleep in that amount of time. Originally my bottom number was set for 5. That was too little and made me feel like I was suffocating. 6 is good for me. Also the type of mask you use will make a difference in feeling like you are suffocating. When I tried a mask like the comfort gel, I always felt like I was trying too hard to suck air. If I used any type of nasal pillow mask (I use Optilife now), I didn't get that feeling.

Country4ever · Post by **Country4ever** » Sat Nov 03, 2007 12:04 pm

Hi Treesap, (haha....I like your name)...
So for you, when your lower pressure was at 5, you felt like you had to suck too hard to get air? I mentioned to someone that my lower number was at 4, and she said many people feel that they are suffocating on that. I wonder if that's the feeling she was talking about.......having to suck too hard to get air.
I just know that on 4, the air felt sort of empty to me....like it was too easy to breath......I'm just trying to figure out if that was my sensation of suffocating??
I was thinking that since I could check my stats every morning, that was as good as having the software, but it sounds like with the software, we can see alot more?? .....probably like when we tend to have apnea, and how much and how long? Also, I could probably see if I did ever use the upper pressure.
I turned off the settling last night, but was just too aware of the pressure, so I put it back to 15 minutes. Its weird.....some nights when I put the mask on it feels like ALOT of pressure, and other nights it doesn't. It must just be my varied perception of things.
Thanks for your help treesap!

jennmary · Post by **jennmary** » Sat Nov 03, 2007 1:18 pm

After nearly 6 months I still use ramp. I only set it for 5 min....but that gives me enough time that my ears dont pop or anything. lol

Honestly......I dont think many drs even look at the smart card data. I am sure I will hear how wrong I am from some others, but none of my drs or my dme has ever taken a look at my card. When my DME had to call me after 30 days to talk compliance they simply asked if I was using it and how I was feeling. My drs all asked the same 2 questions. Most of what they are likely going to do at the appointment has nothing to do with the data from the machine. More about how you are feeling, any issues you are having....that kind of stuff.

I change my pressure if my AHI gets too high when I am sick, then change it back when I am breathing easier. If my dr found out and really wanted to talk about it, I would just tell him the truth. I dont worry about "getting in trouble". He is my paid EMPLOYEE. I am paying for a service.

I also feel like I am suffocating with any pressure under about a 7.

Country4ever · Post by **Country4ever** » Sat Nov 03, 2007 9:28 pm

Thanks Jennmary.

Moby · Post by **Moby** » Sun Nov 04, 2007 2:53 am

It's my understanding (I think from Snoredog?) that "settling" in auto mode on the Resmed is important. The machine remembers and then works from its memory of your breathing rhythm.

Therefore if it works off your waking rhythm (ie the first 10 mins or whatever the settling period is) it is not so effective as when it starts by memorising your sleeping breathing rhythm.

Hope that's right.

Di

Guest · Post by **Guest** » Sun Nov 04, 2007 5:45 am

I used ramp for about the first three months. I found I get to sleep easier without it. I now look forward to that blast of cool air going up my nostrils. I have also change my own pressure. My doctor took it all in stride when I told him but my RT freaked out and gave me the "its illegal" speech (its not). Congratulations on taking charge!

Birdseed · Post by **Birdseed** » Sun Nov 04, 2007 6:32 am

You have just done yourself a big favor....you found CPAPTalk.com! Just to reiterate what others have already told you. YOU need to take control of your own therapy and partner with your doctor to make it work. Be a team and work together. I assure you, if I had not found this forum and read everything I could to understand what was going on with my sleep therapy --- I would still be on a straight CPAP setting of 6, without feeling any better. Funny how the 1st titration was unsuccessful and the retitration resulted in being place on a BiLevel of 13/8 --- which I have since adjusted to 12/9 with some better results based on my Encore Pro software data. Still tinkering, but must do it slowly.

Without this forum and the helpful advice that knowledgable folks on it provide, I would have ended up in that 50% group of non-compliant......

Welcome to the forum and good luck!

Birdseed

Country4ever · Post by **Country4ever** » Sun Nov 04, 2007 8:00 am

Thanks everyone!

My respiratory therapist did the same thing the first time I told her I accessed by nightly data. She had the look on her face like I just confessed to murder. hahaha Plus, when I told her I was getting some info off the internet, she acted like I had just joined a horrible cult.
Why are some people so afraid of others having knowledge?? I realize that there are some people out there that probably don't understand things enough and mess up their treatment, but when a person acts fairly intelligent, and wants to learn what will help her feel the best, what's the problem with sharing information??
I think some people feel that their "power" is diminished, if they share knowledge with people. I really dislike that attitude.

ozij · Post by **ozij** » Sun Nov 04, 2007 8:31 am

Country4ever wrote: She should have given me credit for having half a brain. Perhaps she just works with mostly people who don't??? I just don't know....but I didn't like it.

I think it's your RT who has about half a brain, not the majority of her patients. (Thought of that the first time you mentioned her...). No place in that half brain for seeing other people, gaining new knowledge, etc. She probably never had the experience of acquiring knowledge as a result of looking for it on her own. Which is why she can't imagine how a person can gain valid knowledge by sifting on their own through information that hasn't been predigested for them by a teacher or a trainer.

when I told her I was getting some info off the internet, she acted like I had just joined a horrible cult.

People like us used to be burned as witches.

O.

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