I do seem to sleep better with straight CPAP over VPAP

Stevoreno_55 wrote:I guess I'm a member of the old school but the only setting that I have messed with on my machine is the humidifier's setting; either turned it up or down; I have never messed with the pressure settings on my machine because I never bothered to learn how because my RT told me not to do it. If my RT told me not to do it then it must have been true. Those of you who do mess with your machine's pressure settings; do you also own a manometer so you can check your machine's pressure from time to time to confirm that your machine's pressure is what it says it is?


Stevoreno_55
MS Gulf Coast
04/19/14

Were their lips moving when they said that? Whatcha gonna do if your RT isn't available?

Yes, I have a manometer. But, it's easy to make a homemade one or check the output with a ruler and a bucket of water.
The discussions of manometers have occurred many, many times on the forum. You should know that.......you started a thread about "Manometer" on April 9th.


Den

.

The great majority of us have been 'messing' with our pressure settings for years, and tracking progress with what are (these days) pretty sophisticated software... doctors to whom we've spoken about our doing that (and who are secure in their own selves vs very old school patronizing types who believe patients are idiots and must not be part of their own treatment) are usually exceedingly interested and complimentary about our taking personal responsibility.

You can stick your head in the sand (or the past) all you want, but it is a relief (far less anxiety provoking) to know what's going on with our own bodies, and to be able to deal with things as they arise rather than waiting for others to decide on small tweaks sometimes weeks after the fact (of whatever is going on). Diabetics have been making decisions about sugar and insulin dosage forever, and for us to adjust pressures up or down a notch or two - pressure that only blows room air into our throats - is no big deal.

I don't believe most of us have manometers - Den is a knowledgable person though, and good for him for using one.

Wulfman... wrote:

Stevoreno_55 wrote:I guess I'm a member of the old school but the only setting that I have messed with on my machine is the humidifier's setting; either turned it up or down; I have never messed with the pressure settings on my machine because I never bothered to learn how because my RT told me not to do it. If my RT told me not to do it then it must have been true. Those of you who do mess with your machine's pressure settings; do you also own a manometer so you can check your machine's pressure from time to time to confirm that your machine's pressure is what it says it is?


Stevoreno_55
MS Gulf Coast
04/19/14

Were their lips moving when they said that? Whatcha gonna do if your RT isn't available?

Yes, I have a manometer. But, it's easy to make a homemade one or check the output with a ruler and a bucket of water.
The discussions of manometers have occurred many, many times on the forum. You should know that.......you started a thread about "Manometer" on April 9th.


Den

.

Yes the RT's lips were moving and yes I did start a discussion on manometers; is there a problem?


Stevoreno_55
MS Gulf Coast
04/19/14

The sleep doctor that treated me prescribed a pressure of 5 - 17 and left it at that.

I picked up an oximeter and dialed it in to an optimum pressure of 9 - 13. I spend most of the night at 10.5. With a running apnea score of 0.4 and no desaturations I think I did a reasonable job of dialing things in. The doctor could care less and I am still in the range he thought would be best.

It is wonderful if you have a doctor that is willing to work with you, but many of us don't have that luxury and if we want optimum treatment we need to take things into our own hands. I did send a note to the doctor saying what I ended up dialing in and never heard back so I think I am OK.

My feeling is that if you can cook a meal and not die from it, you can probably dial in a xPAP machine and get optimal treatment from it.

not sure why some get so worried. I to have a recoding o2 meter and with that and my PAP data I can be very confident of what I am doing, anything is better then no machine, so all I can do is make things better, hard to mess that up. tune and tweak for the sweet spot that best fits you. who is better qualified then you to find it?

most docs are there to collect the money, there are some good ones but not to many left. one can see why, they are under such control and scrutiny they die inside. like slaves to the system, do as little as possible and make as few wave as possible and get to your retirement and be done with it. most start school wanting to make a difference and end up dead inside, at least that is what it would seem.

I could be wrong, maybe they started school for the big bucks they will make by doing as they are told.

thing is I strongly believe the whole setting up the machine is very over blown as to how hard it is and how complicated it is and how bad it can be getting it wrong. with some data and help from the forum one can be tuned in in record time.

very simple, and easy to do.

xyz wrote:> one of the guys that responded to one of my threads had mentioned straight CPAP being better and feeling better

It's difficult for me to imagine how that could possibly be true. Well, I can think of one, which I'll mention below (it was set up wrong).

> I am sure with time I would get used to the pressure changes

It has to be set up properly to work well. If apap worked less well for you than cpap, my guess is that the apap setting was wrong.

See the thread titled "Am I Missing Something." See zoocrewphoto's post ("your apap is set wide open").

Actually, I think it comes down to personal preference and what we are sensitive to. An apap can be adjusted properly and give excellent results. But if a person is sensitive to pressure changes, their sleep quality will go to hell. I can sleep through pressure changes. My machine gets up to 17 sometimes (usually only for a few minutes before going down). It goes up and down between 11 and 14 all the time. I really only notice if it if I am on my back and my mouth opens wider than normal and causes my cheeks to flap. I use a full face mask, so mouth open doesn't hurt my therapy. But I can't stand my cheeks flapping.

Now, I can sleep through the pressure changes, but even a slight leak drives me crazy. I get an almost zero leak line because I can't sleep with a leak. Even a slight hiss that I can't feel, or a slight feeling of air that I can't hear. I can't stand it. My mom can sleep through full blown major leaks. She even got the red frowny face on her machine for large leak. I've walked through the living room, and her mask is hissing away, and still an hour later. How did she sleep? Great. Nothing bothers her.

Some people really benefit from EPR or c-flex while others can't stand it.

We have to figure out what works for us, and it helps new people if we give them the options and help them try the possibilities. What works well for us may not work well for somebody else. But since we know that, we can offer suggestions. Just because something doesn't work well for somebody doesn't mean that the pressure range was wrong, just that that system wasn't ideal. If I had to go with straight cpap, it would probably be a 14 or 15 to prevent most of my events. But with apap, I can spend most of the night below 13 and let it spike as needed.

Stevoreno_55 wrote:I guess I'm a member of the old school but the only setting that I have messed with on my machine is the humidifier's setting; either turned it up or down; I have never messed with the pressure settings on my machine because I never bothered to learn how because my RT told me not to do it. If my RT told me not to do it then it must have been true. Those of you who do mess with your machine's pressure settings; do you also own a manometer so you can check your machine's pressure from time to time to confirm that your machine's pressure is what it says it is?


Stevoreno_55
MS Gulf Coast
04/19/14

Well yes for that matter but what differance does it make????????!!!?!?!?!?!

This is what matters:

1. AHI consistantly under 1.

2. Few signs of any unstable breathing.

3. Little snoring.

4. Feel better.

5. Perform better.

Stevoreno_55 wrote:

BlackSpinner wrote:
Would you make the same suggestion to a diabetic? Don't change your insulin level until your doc has seen all your data?

I most certainly would; I'm a type 2 Diabetic myself but I do not have to take shots; just 2 pills a day to control my blood sugar.



Stevoreno_55
MS Gulf Coast
04/19/14

So if you were injecting insulin? You wouldn't adjust your levels? Insulin can kill but even kids adjust their insulin levels based on what their readings say. When I took over from my mother who got dementia I adjust the levels based on the readings with the blessings of her doctor. The same way she did before he went too far down the dementia road and couldn't remember enough.

Also my sleep doctor treated me like an intelligent adult. He was quite happy to let me adjust the pressure of the AIR I was breathing as long as I kept my AHI under 5.

back using VPAP but have made it more like a CPAP

min EPAP 18
max IPAP 25
pressure support 1

it works well, very mild pressure changes and yet can track and increase as needed

will see what the number say over time

my o2 levels are much better with the higher pressure, am liking that allot

BlackSpinner wrote:

Stevoreno_55 wrote:

BlackSpinner wrote:
Would you make the same suggestion to a diabetic? Don't change your insulin level until your doc has seen all your data?

I most certainly would; I'm a type 2 Diabetic myself but I do not have to take shots; just 2 pills a day to control my blood sugar.



Stevoreno_55
MS Gulf Coast
04/19/14

So if you were injecting insulin? You wouldn't adjust your levels? Insulin can kill but even kids adjust their insulin levels based on what their readings say. When I took over from my mother who got dementia I adjust the levels based on the readings with the blessings of her doctor. The same way she did before he went too far down the dementia road and couldn't remember enough.

Also my sleep doctor treated me like an intelligent adult. He was quite happy to let me adjust the pressure of the AIR I was breathing as long as I kept my AHI under 5.

If I was on insulin which I'm not I wouldn't adjust my insulin levels without first discussing it with my doctor. If the doctor said I could do it; I'd probably do it but I hope I never have to take insulin. I've had relatives ask me for some of my prescription meds from time to time; even offer me money for the ones I take for pain; I don't share my prescription meds with anybody because one prescription can work fine on me but might not on somebody else. I don't know my relative's personal medical history nor would I want to give them something I'm taking which might cause them harm; I will not do that. Now if they asked me for 2 500MG Extra Strength Tylenols because they had a headache I'd give them 2 500MG Extra Strength Tylenols for their headache.


Stevoreno_55
MS Gulf Coast
04/22/14

space45 wrote:back using VPAP but have made it more like a CPAP

min EPAP 18
max IPAP 25
pressure support 1

it works well, very mild pressure changes and yet can track and increase as needed

Actually you've got your machine set up to behave like an S9 AutoSet running in APAP mode with min pressure = 19, max pressure = 25, and EPR = 1; the only real difference is that the S9 AutoSet is limited to a max pressure of 20 instead of 25.

And if it works for you, then great! We're all different and to a great extent we do have to figure out what works best for us.

And that does mean: Some people do best with straight CPAP and NO exhalation relief. Some do best with straight CPAP and some or lots of exhalation relief. Some do best with an APAP running in a well chosen Auto range. And some need bi-level with a PS larger than what can be provided by exhalation relief on a CPAP or APAP.

Stevoreno_55 wrote:

BlackSpinner wrote:

Stevoreno_55 wrote:

BlackSpinner wrote:
Would you make the same suggestion to a diabetic? Don't change your insulin level until your doc has seen all your data?

I most certainly would; I'm a type 2 Diabetic myself but I do not have to take shots; just 2 pills a day to control my blood sugar.



Stevoreno_55
MS Gulf Coast
04/19/14

So if you were injecting insulin? You wouldn't adjust your levels? Insulin can kill but even kids adjust their insulin levels based on what their readings say. When I took over from my mother who got dementia I adjust the levels based on the readings with the blessings of her doctor. The same way she did before he went too far down the dementia road and couldn't remember enough.

Also my sleep doctor treated me like an intelligent adult. He was quite happy to let me adjust the pressure of the AIR I was breathing as long as I kept my AHI under 5.

If I was on insulin which I'm not I wouldn't adjust my insulin levels without first discussing it with my doctor.

I think you are misunderstanding what BlackSpinner is getting at: Type I diabetics are routinely expected to adjust their insulin dose on a daily basis determined by their blood sugar levels and any changes in their eating patterns. (My BIL routinely calculates how much additional insulin he will need for large holiday feasts when we're in town for a visit.) Without properly adjusting the insulin dose for changing circumstances, an insulin dependent diabetic increases the risks of both getting too much insulin and having a severe blood sugar crash and getting too little insulin and having too high of a blood sugar spike. And, because her mother is no longer capable of doing the necessary adjustments to her insulin dosing, BlackSpinner has taken over that job.

BlackSpinner's other point is that our sleep patterns are also not fixed in stone. And many of us do find that certain tweaks, including tweaking the pressure settings, are useful to keep our PAP therapy optimized. And some sleep docs understand this and treat their OSA patients like competent adults and others do not.

In my case Sleep Doc #4 is fine with the idea of my experimenting with my sleep---both in terms of my PAP therapy and in terms of the dosing of the Ambien he wants me taking for lack of any other ideas on how to minimize the problems I have with getting to sleep at half-way plausible bedtime for my job and the numerous wakes that I often have when I go to bed too early. Last fall when things were really bad with my sleep, I asked him if it was ok to experiment with changing my BiPAP settings. He said, "Sure, as long as you do it sensibly. But you'll probably find that your current Auto BiPAP range is about as good as anything since that range was found experimentally back when you were first working on making PAP work." (I wanted to find out whether using a fixed BiPAP might cause fewer wakes; it didn't because of aerophagia that kicks in when I use IPAP = 8 and EPAP = 5 or 6, which is what seems to be needed to consistently keep my AHI below 4.) He's also confident with allowing me to make the decision about whether I need 2.5mg or 5mg of Ambien at night (or even 10 if I really wanted to go there, which I don't). He did have me take the Ambien every night for about a month or so regardless of whether I thought I needed it or not to get to sleep. But after a month of using Ambien to help stablize the bedtime, he then told me that I was the one who would need to figure out what I wanted to do long term with regards to the Ambien and that if I wanted to start experimenting with skipping on some nights, that would be ok. At this point, I still take it several times a week (in a bad week) or if I really need to get to bed before it's 1:00am (since it does seem to help minimize the problems I have with too many wakes when I go to bed too early). But I really am now taking it "as needed" rather than "every night". It is nice to be treated like I'm a competent adult who can understand my own health problems and be an active participant in my own therapy. That was NOT the case with sleep docs #1, 2, and 3.

I didn't know that about insulin so I stand corrected.



Stevoreno_55
MS Gulf Coast
04/23/14

Stevoreno_55 wrote:

Wulfman... wrote:

Stevoreno_55 wrote:I guess I'm a member of the old school but the only setting that I have messed with on my machine is the humidifier's setting; either turned it up or down; I have never messed with the pressure settings on my machine because I never bothered to learn how because my RT told me not to do it. If my RT told me not to do it then it must have been true. Those of you who do mess with your machine's pressure settings; do you also own a manometer so you can check your machine's pressure from time to time to confirm that your machine's pressure is what it says it is?


Stevoreno_55
MS Gulf Coast
04/19/14

Were their lips moving when they said that? Whatcha gonna do if your RT isn't available?

Yes, I have a manometer. But, it's easy to make a homemade one or check the output with a ruler and a bucket of water.
The discussions of manometers have occurred many, many times on the forum. You should know that.......you started a thread about "Manometer" on April 9th.


Den

.

Yes the RT's lips were moving and yes I did start a discussion on manometers; is there a problem?


Stevoreno_55
MS Gulf Coast
04/19/14

fwiw the pressure reading is on the display so there is no need for a manometer to simply adjust the pressure
as you are using the previous pressure on the display as a reference.

a manometer is only needed when you doubt the display reading is correct
so you can either have your dme check this reading or invest in a manometer or use the bucket o water method mentioned in stevos manometer thread

the point is that a manometer is not needed to simply adjust your pressure setting

Guest wrote:

Stevoreno_55 wrote:

Wulfman... wrote:

Stevoreno_55 wrote:I guess I'm a member of the old school but the only setting that I have messed with on my machine is the humidifier's setting; either turned it up or down; I have never messed with the pressure settings on my machine because I never bothered to learn how because my RT told me not to do it. If my RT told me not to do it then it must have been true. Those of you who do mess with your machine's pressure settings; do you also own a manometer so you can check your machine's pressure from time to time to confirm that your machine's pressure is what it says it is?


Stevoreno_55
MS Gulf Coast
04/19/14

Were their lips moving when they said that? Whatcha gonna do if your RT isn't available?

Yes, I have a manometer. But, it's easy to make a homemade one or check the output with a ruler and a bucket of water.
The discussions of manometers have occurred many, many times on the forum. You should know that.......you started a thread about "Manometer" on April 9th.


Den

.

Yes the RT's lips were moving and yes I did start a discussion on manometers; is there a problem?


Stevoreno_55
MS Gulf Coast
04/19/14

fwiw the pressure reading is on the display so there is no need for a manometer to simply adjust the pressure
as you are using the previous pressure on the display as a reference.

a manometer is only needed when you doubt the display reading is correct
so you can either have your dme check this reading or invest in a manometer or use the bucket o water method mentioned in stevos manometer thread

the point is that a manometer is not needed to simply adjust your pressure setting

A manometer which I did consider purchasing from CPAP.com was to have so I could verify what my machine's pressure actually was. It was originally set to 18cm when I received it from Apria in early 2008; 3 weeks ago when the RT brought hers out to the house she checked my machine and got a reading of 13.5cm. My machine has since been shipped by the DME to Philips Respironics in Pennsylvania since I couldn't do it to have my machine's humidifier and pressure checked out. The machine has been at Philips Respironics one week today. I'll give the DME a call next week to see if they've heard anything back from Philips Respironics but in the meantime the DME is letting me use one of their machines; a one year old ResMed S9 Elite CPAP with HH; it's a very nice machine; the only thing I don't like about it is that it's just too quiet.



Stevoreno_55
MS Gulf Coast
04/23/14