CHANGE MY OWN PRESSURE?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
TyroneShoes
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CHANGE MY OWN PRESSURE?

Post by TyroneShoes » Sat Oct 25, 2014 5:38 pm

I had a sleep study two days ago. The Dr. called me today and said he would have the DME change me to a pressure of 8. I have been 5-20 for the first 7 weeks after a home study, but the new study seems to indicate an AHI of 0.7 at 8 cm, so he would like me to try that.

He might have even said 0.07, but the math could not work out for a number that low in 6 hours.

Looking over my SH data, there are a few days in the 7 weeks that the pressure peaked at 12, once at 13, once at 16. There were a couple of 20's, but those highest pressure readings were associated with newbie mask issues, etc. It does seem to correlate that there are more events associated with pressures of 5-7, and this may explain high CA readings at lower pressure as well. But I am not an expert, so in reality I have no actual idea what I am talking about. AHI for me lately has been about 2-3, with the original home study (no CPAP) reading 55.7. I keep EPR at 3.

What do the local experts think about me changing the pressure myself to 8? The Dr. does not recommend that I change it myself, but that is probably the party line for any Dr. who pays malpractice insurance premiums.

I am also wondering if I should just tighten the range to about 8-12 or so instead for now.

I am also wondering how this will affect my negative symptoms of the APAP, where my throat feels a little sore and I seem to have sinus headaches (never had them before CPAP) the next day (but never at first in the morning), especially if pressure rises above 14 or so the previous night.

You are all welcome to give your opinions on what you would do. I also welcome all anecdotal information you may have on this particular subject.

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Wulfman...
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Re: CHANGE MY OWN PRESSURE?

Post by Wulfman... » Sat Oct 25, 2014 5:47 pm

The vast majority of us change our own pressures and other settings (or know how to do it).
It's YOUR machine and YOUR therapy. YOU are the one sleeping with it at night.
It's only air.
I'd say go for it. A little more minimum pressure can head off events so they don't occur and limiting the maximum pressure can keep the machine from "running away" if too many flow limitations or snores are encountered.


Den

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TyroneShoes
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Re: CHANGE MY OWN PRESSURE?

Post by TyroneShoes » Sun Oct 26, 2014 11:00 am

Did someone remove a post? Yesterday there were two replies; today only one. Very curious.

So I changed pressure to 8-16. Last night, AHI of 2.9, which is about what its been for the last 10 days or so, on 5-20. It did feel like the minimum pressure was doing its job a little better (5 is really nothing).

I am beginning to think that a titration study is not really an empirically-sound experiment. If you change pressure hour to hour that does not account for other changes that might affect things, such as mask fit, sleep position, and even what sleep state you might be in, or the fact that you are in a very uncomfortable way-too-soft bed in an unfamiliar windowless room. So about the best it can really do is take a wild-ass guess based on limited soft data, correlated to how many events it sees, which isn't much more accurate than a crap shoot.

If I am right about that, this speaks to the value of changing pressure slightly every 2-3 weeks and finding a lower AHI that way, which would be based on a lot more data. Not practical in a clinical setting, but for those who are informed enough to do it at home, I think this may be something to consider if the numbers are not exactly where you think they should be.

This may also signal that the sleep Drs may be giving too much weight to the findings of a sleep study. If it is not pretty accurate, I don't see how I go all the way from 5-20 to straight 8 based on how many random breathing events it saw in that hour or so that I was at 8 during the study. It seems like going half way, 8-16, makes more sense right at first. But I would be easily disabused of this notion should someone explain to me why it might be wrong.

And don't get me wrong; 2.9 is not a bad number. And it is only one number. I will have to get a lot more nights in before I can evaluate what this pressure is doing for me, I guess.

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MyJanine
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Re: CHANGE MY OWN PRESSURE?

Post by MyJanine » Sun Oct 26, 2014 11:06 am

Best decision ever made. Pay attention to the information on this forum, and take control. Without this... we would have been waiting at least a month any slight incremental changes to occur. Easier than programming your VCR that flashes 12:00 all day & night (you DO remember those?). The process is likely similar to this... but wait for Pugsy/Wulfman/etc and other admins to jump in:
Changing the Pressure of a Respironics System One PAP Machine
https://www.youtube.com/watch?v=2miZa08XHdE

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Wulfman...
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Re: CHANGE MY OWN PRESSURE?

Post by Wulfman... » Sun Oct 26, 2014 11:21 am

TyroneShoes wrote:Did someone remove a post? Yesterday there were two replies; today only one. Very curious.

So I changed pressure to 8-16. Last night, AHI of 2.9, which is about what its been for the last 10 days or so, on 5-20. It did feel like the minimum pressure was doing its job a little better (5 is really nothing).

I am beginning to think that a titration study is not really an empirically-sound experiment. If you change pressure hour to hour that does not account for other changes that might affect things, such as mask fit, sleep position, and even what sleep state you might be in, or the fact that you are in a very uncomfortable way-too-soft bed in an unfamiliar windowless room. So about the best it can really do is take a wild-ass guess based on limited soft data, correlated to how many events it sees, which isn't much more accurate than a crap shoot.

If I am right about that, this speaks to the value of changing pressure slightly every 2-3 weeks and finding a lower AHI that way, which would be based on a lot more data. Not practical in a clinical setting, but for those who are informed enough to do it at home, I think this may be something to consider if the numbers are not exactly where you think they should be.

This may also signal that the sleep Drs may be giving too much weight to the findings of a sleep study. If it is not pretty accurate, I don't see how I go all the way from 5-20 to straight 8 based on how many random breathing events it saw in that hour or so that I was at 8 during the study. It seems like going half way, 8-16, makes more sense right at first. But I would be easily disabused of this notion should someone explain to me why it might be wrong.

And don't get me wrong; 2.9 is not a bad number. And it is only one number. I will have to get a lot more nights in before I can evaluate what this pressure is doing for me, I guess.
If I remember correctly, it might have been "Julie" and she was basically agreeing with my post and saying that we all do it and/or know how.

But, your perception of the sleep studies is pretty "spot on". It's a one-night shot when we're TRYING to sleep in a strange bed, in strange surroundings and maybe different temperatures than what we're used to.......with wires stuck all over our bodies and on and on.......

I honestly hope I NEVER have to go through another "clinical" sleep study again! Even though I'd know what to expect now.

Using an APAP in a range of pressures MAY compensate for lots of things for lots of people. However, some people (like me) don't sleep very well with changing pressures. But, those are options that individuals need to find for themselves.


Den

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Julie
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Re: CHANGE MY OWN PRESSURE?

Post by Julie » Sun Oct 26, 2014 11:31 am

It was me... determined not to do to someone else what I had claimed was being done to me (amazing how easy it is not to see yourself!).

Tyrone, I don't remember one way or the other if you've had leak issues, but have you ever tried a FF mask or have your stats told you it was unneeded?

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Wulfman...
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Re: CHANGE MY OWN PRESSURE?

Post by Wulfman... » Sun Oct 26, 2014 11:41 am

Julie wrote::D It was me... determined not to do to someone else what I had claimed was being done to me (amazing how easy it is not to see yourself!).
No problems with ME. I don't mind having my ideas validated.


Den

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squid13
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Re: CHANGE MY OWN PRESSURE?

Post by squid13 » Sun Oct 26, 2014 11:55 am

Here is a good film to watch for the S9, just click on the S9. http://www.cpaplibrary.com/machines.html

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TyroneShoes
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Re: CHANGE MY OWN PRESSURE?

Post by TyroneShoes » Sun Oct 26, 2014 3:07 pm

Julie wrote::D It was me... determined not to do to someone else what I had claimed was being done to me (amazing how easy it is not to see yourself!).

Tyrone, I don't remember one way or the other if you've had leak issues, but have you ever tried a FF mask or have your stats told you it was unneeded?
Actually, I had my most consistent leak issue last night; over the mendoza line for over half an hour. But I am not really having mask issues, at least I don't think I am.

I got to try the AirFit P10 also, the other night. I agree with comments on the super-improved CO2 overflow valve, and the removal of a one-direction elbow. I also liked the reduced weight. I found the headgear clever, but it did not seem to work for me; never could get it loose enough (some on the forum think I have a big head anyway).

But Julie, for what it is worth, I always find your posts helpful. No one should be moaning about you posting "the same thing", because even if the wording was identical and you posted blindly at the exact same time, like Den says, that is validation. Don't let that get to you, because you have a way of wording the same things sometimes, that gives an importantly different perspective, and it usually goes down a little easier when coming from you, because you have a nurturing personality that we all love. You are a valued member here, and you have a right to post, and have earned a right to be considered a valued poster. Keep on posting; the majority of us welcome it from you. Don't bogart those posts, my friend...pass them over to us.

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Re: CHANGE MY OWN PRESSURE?

Post by Julie » Sun Oct 26, 2014 3:19 pm

Wow, thank you so much! It is good to hear that something I say (on occasion ) is heard. It's too easy to see everyone else's stuff as better informed, more meaningful, etc., so thank you. I do hope you find the answer tho' to your problems and maybe even get back with an Aha moment soon.

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Re: CHANGE MY OWN PRESSURE?

Post by grayghost4 » Sun Oct 26, 2014 3:55 pm

I am beginning to think that a titration study is not really an empirically-sound experiment.

amen to that

I have had three studies in the last two months at three different labs at three different hospitals.
And none of them agree with eather of the other two.
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Re: CHANGE MY OWN PRESSURE?

Post by Pugsy » Sun Oct 26, 2014 4:07 pm

I had an in lab sleep titration study...full night because during the diagnostic study I didn't meet criteria until too late to have adequate time for finding the right pressure and they still couldn't get it right.
I didn't sleep well at all and only got 6 minutes of REM sleep where my OSA is worse and needs more pressure so I came out of the titration study with a RX that works great in non REM sleep but is totally inadequate for REM sleep.
Sometimes they get it right and sometimes they don't. Plus some sleep techs are idiots..I had one for the titration study. I am surprised he could find his butt with both hands.

Change your own pressure only if you are totally comfortable doing it. It's easy but just because a whole bunch of us are comfortable doing it doesn't mean you should do it if you are okay doing it.

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Re: CHANGE MY OWN PRESSURE?

Post by Janknitz » Sun Oct 26, 2014 4:22 pm

I am beginning to think that a titration study is not really an empirically-sound experiment. If you change pressure hour to hour that does not account for other changes that might affect things, such as mask fit, sleep position, and even what sleep state you might be in, or the fact that you are in a very uncomfortable way-too-soft bed in an unfamiliar windowless room. So about the best it can really do is take a wild-ass guess based on limited soft data, correlated to how many events it sees, which isn't much more accurate than a crap shoot.

If I am right about that, this speaks to the value of changing pressure slightly every 2-3 weeks and finding a lower AHI that way, which would be based on a lot more data. Not practical in a clinical setting, but for those who are informed enough to do it at home, I think this may be something to consider if the numbers are not exactly where you think they should be.

This may also signal that the sleep Drs may be giving too much weight to the findings of a sleep study. If it is not pretty accurate, I don't see how I go all the way from 5-20 to straight 8 based on how many random breathing events it saw in that hour or so that I was at 8 during the study. It seems like going half way, 8-16, makes more sense right at first. But I would be easily disabused of this notion should someone explain to me why it might be wrong.

You are a quick study. This is exactly spot on, IMHO.

I think it makes perfect sense to do titrations at home, in your own bed and sleeping situation, with a lot of support for issues like mask fit. Kaiser does it this way--they lend out a machine for a week for in-home titration. I'm not saying it's EASY--it was damn hard, but it also helps them evaluate who is really going to use the machine and who isn't. It was particularly hard because there was no humidifier (too difficult to clean a humidifier for multi-patient use, apparently). While this was clearly cost effective for Kaiser (my local Kaiser screens a few hundred people and puts 50 to 100 on CPAP EACH WEEK), it also makes huge sense.

It's also WHY the members of this board are so adamant that people MUST have efficacy data capable machines. We don't even know what percentage of in-lab titrations manage to be accurate, and what's a person supposed to do if it wasn't??? I remember a member here who had a data capable machine but didn't know it. When she finally learned to access her data after THREE YEARS she found out her treated AHI was in the 20's! Clearly not effective for her, and whenever she complained to her doctor that she wasn't feeling any better on CPAP she was patted on the head and told to "just keep using the machine".

Even if a CPAP user doesn't care to monitor his or her own data or tweak it, having efficacy data is useful for the CLINICIAN to determine if changes are helpful or harmful. I can't believe the ignorance in the industry that promotes brick machines without efficacy data.
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Re: CHANGE MY OWN PRESSURE?

Post by palerider » Sun Oct 26, 2014 4:34 pm

grayghost4 wrote:I am beginning to think that a titration study is not really an empirically-sound experiment.

amen to that

I have had three studies in the last two months at three different labs at three different hospitals.
And none of them agree with eather of the other two.
too many people (including most of the medical community, i seems) fail to miss the point that a sleep study is nothing more than a vague starting point on a journey of change.

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Re: CHANGE MY OWN PRESSURE?

Post by pratzert » Mon Oct 27, 2014 7:30 pm

palerider wrote:
grayghost4 wrote:I am beginning to think that a titration study is not really an empirically-sound experiment.

amen to that

I have had three studies in the last two months at three different labs at three different hospitals.
And none of them agree with eather of the other two.
too many people (including most of the medical community, i seems) fail to miss the point that a sleep study is nothing more than a vague starting point on a journey of change.
I agree that an overnight titration study is primarily a tool for a starting point. Everyone has to start somewhere, and these studies are the first step in establishing the baseline. Tweak it from there

But an overnight study does more than just come up with a therapy pressure.

They video you and watch for "restless leg syndrome", and may help in identifying what type of apnea events a person experiences (central or other) and monitor your brainwave activity.

I feel strongly that insurance companies should strongly push APAP machines and ones that record many types of information. An APAP over a CPAP can help patients dial-in their therapy sweet spot and avoid having the patient having to run back to the Doctor at the slightest change in sleep patterns.

It's the evil DME's that try so hard to push the cheaper, and less capable machines on patients.

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