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Thoughts on adjusting own pressure?
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Galactus Online

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Machine: Phillips Respironics System One PRS1 DS760P Auto BiPAP
Mask Type: Nasal pillows
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: System One Heated Humidifier + Climate Line
CPAP Pressure: E/I 13/20 PS 4/7 BiFlex 3
CPAP Software: SleepyHead EncoreBasic

Other Comments: Sleep can be a good thing.

Sex: Male
Location: USA

Post: #11
RE: Thoughts on adjusting own pressure?
Ok, so I don't know you're story and how long you went undiagnosed. So I'll tell you my story, and see if you can gain anything. I was quite a few years in undiagnosed, to the point that I was falling asleep at dinner, as soon as a movie came on, as soon as I sat in a car, etc. I finally got to the sleep study that took me almost 6 months to get into an appointment. I slept that night for the first time in years. I felt unbelievable that day, I mean I felt like I was 10 years younger, it was unreal. I got my machine a week later. I have yet to in a year now ever duplicate the way I felt that very first day. It gave me an expectation I have yet to be able to meet again. Through help and patience from this board, the people here and myself my AHI is under 5 and usually under 1. It wasn't that hard and it cost me very little, in time and in money. -------- I say all this for 1 point, I have still not duplicated the way I felt that first night and have come to feel I never will. BUT I do feel better, I am not falling asleep everywhere, I am not peeing 3+ a night, my wife says I am not a loose canon (as much lol), and there are other things that tell me I am doing better. How about you?

Now you, from what you said you started at AHI of 25. You had one night under 5, and a forward average of 6.7. I see you say this as a bad thing, when in fact it's a good thing. You're 6 weeks in or so and have gotten from 25 to 6.7, you're well on your way. So is another sleep study within a few months really going to tell you anything magical? Honestly I can't know for certain. But from my 1 year experience I would say it is unlikely. If this is a pressure issue to get you below 5 you're here in the best place, and we can help you find it. Is it a sleeping issue? Back, side, sleeping position? If it is you're unlikely to get that from a sleep study either. Again you're here in the right place and we can help you.

You say you have time before the appointment, so you have nothing to lose. Get started tonight. First things first, your sleep position is? If on your back try on your side and see if your AHI goes down. Put a pillow behind your back a full body pillow, or whatever force yourself on your side and then look at the data and see if that helps you. You can also just raise the pressure pressure by 2 and see if that helps you as well. Simple easy change and watch the data. Watching every 7 days and checking making small changes and checking will get you there.

Plenty of people, help and support here, as long as you're committed to making it work believe me when I say the people here can help you do it.

If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
12-17-2014 08:25 PM
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OMyMyOHellYes Offline

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Machine: Respironics 560 Auto
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Post: #12
RE: Thoughts on adjusting own pressure?
I thkn a new script for an APAP would be mo betterer than another titration study.

But .... Back in my S8 Elite CPAP days (no auto, no reporting), I could tell when I wasn't sleeping well, and it was usually with a weight gain, and I would bump mine up like .5 cm and it would usually work. Turns out when I got my S9 Autoset, my 95% pressure is EXACTLY what I had self titrated myself to...

OMM
12-17-2014 08:42 PM
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sleepypaul Offline

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Post: #13
RE: Thoughts on adjusting own pressure?
Thanks for the replies so far. I'm really kicking myself for not finding this board sooner and doing more homework before seeing the doc.

Since we're sharing...My wife "diagnosed" me with sleep apnea at least 5 years ago and urged, urged, urged me to get a sleep study down. So I did. I was psyched because that room had the same exact mattress as the one we just bought at home. The tech wired me up, hooked me in, and shut off the lights. Then she came back in a few minutes later to tell me the connection wasn't good and moved me to another room. I was uncomfortable enough with all that crap stuck to me. It was supposed to be a split night study but I never reached REM sleep so they never got to the titration. Part of the problem was the oximeter they used on my finger. It didn't allow my finger to naturally curl and that just bothered me all night and I ended up focusing on it to the point of not falling asleep.

So the office tells me I'd have to repeat the study and my insurance already covered next to nothing. I was so frustrated and pissed by the whole thing that I swore it off. I knew mine was brought on my weight gain. Add two kids and several pounds later, my wife and I joined Weight Watchers and lost some pretty good weight. I could feel the difference. However, we stopped our membership because of the cost and waning interest and the weight came back and so did the apnea. I'd estimate that if I lost 20lbs, I'd probably be pretty good--ideally it would be 50lbs, but that was 15-20 years ago.

I had a dental appt in Sept/Oct and before I went in, I noticed there was a sleep study office next door. My wife had been bugging me again about doing a sleep study so I went in, they confirmed our new insurance covered 85% and I made the first appt.

The first sleep study wasn't easy but it was enough to give the medium sleep apnea diagnosis. A couple of weeks later was the titration and the miraculous sleep I had that night. Like Galactus, I want to replicate that.

Yes, my AHI is way down, but maybe I'm a perfectionist and maybe I'm too much into the instant gratification. I know that even averaging 6.7, I can still feel tired when I awake. I know when I'm below 5, I'm going to have a pretty good day. Maybe it's false hope but with more energy, I'm hoping it will be motivation to get more active.

I am a back sleeper. I know I do occasionally sleep on my side but I can't fall asleep in that position. At least on my back, my mask doesn't blow onto my wife. However, I favor my left side when I do side sleep and then the mask vents directly at my wife. She got used to the noise when I moved the CPAP closer to the floor, but she was bothered by the breeze so now I sleep in the guest room. Honestly we both sleep better now.

To close, last night I bumped up the pressure to 10.2. I didn't see an improvement but I'm going to keep it there for a few days. I'm worried that asking for a new scrip for a new machine will bring more expense since I'm now the owner of my machine and not renting anymore. I don't understand why AutoSet type CPAPs aren't the standard of care. I guess there'd be no repeat business. You'd think the insurance company would specify them as the minimum.

I've got some more questions. I hope you'll continue to entertain them. Trust me, I would rather search for them, but don't know the right key words. There has to be a point of diminishing return regarding the pressure, right? At what point do you know it's set too high? Do you feel like you're drowning? Is the correlation between AHI and pressure as simple as "still have AHI above X? then increase pressure by Y" Would you ever decrease the pressure to achieve a better AHI?

Thanks,
Paul
12-17-2014 10:32 PM
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Ghost1958 Offline

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Machine: PRS1 Series Sixty Auto Aflex
Mask Type: Nasal mask
Mask Make & Model: F&P Eson
Humidifier: PRS1 with Heated Hose
CPAP Pressure: 10.5 min 16 max
CPAP Software: SleepyHead EncoreBasic

Other Comments: Moderate to Severe SA Obstructive. Rapid O2 desat off the machine.

Sex: Male
Location: KY

Post: #14
RE: Thoughts on adjusting own pressure?
The point of diminishing return concerning Obstructive Apnea is the point that events are cleared but leaks are to hard to control and sleep is disturbed by the pressure being used.

If you dont need much pressure to clear things up thats not usually a problem. If you need higher like 15 to 20 it can be and even less for alot of folks. Which is where autopap comes in because your not sleeping under that higher pressure all the time only when you need it.

Im not sure you would ever decrease pressure to get a lower AHI but if you cant sleep with the pressure needed it defeats the purpose of getting restful sleep.
12-17-2014 11:01 PM
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Galactus Online

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Posts: 1,388
Joined: Jan 2014

Machine: Phillips Respironics System One PRS1 DS760P Auto BiPAP
Mask Type: Nasal pillows
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: System One Heated Humidifier + Climate Line
CPAP Pressure: E/I 13/20 PS 4/7 BiFlex 3
CPAP Software: SleepyHead EncoreBasic

Other Comments: Sleep can be a good thing.

Sex: Male
Location: USA

Post: #15
RE: Thoughts on adjusting own pressure?
I'm happy to entertain any questions you have.

The machine works by using an air splint to keep your airway from collapsing. Think of a straw, then pinch it, now blow air into it till it stays open despite the pinching. Depending on your level of pinching = your pressure level to keep it open. For me that it 16-20.

You need to use the data from the machine to determine what pressure you need. You download the data from the card and look at it in sleepyhead. You check your events then raise the pressure by increments until the events go down to the level you want.

For me I was titrated at 18 and given a brick, no data no efficacy results no nada. When I complained they planned to just lower me to 15 with no data check. Because of the people here I bought a data capable Bipap and I started doing the job myself. Now I am at 13 EPAP 16-20 IPAP. I check my data weekly to make sure I am maintaining and that's that.

Now you need to do your best to make yourself sleep on your side for a few nights and see how it changes your AHI. You also need to keep a close eye on the data and post some screen shots for us so we can help you better.

I do not claim to be an expert but seriously speaking at 6-7 you should be exhibiting far less symptoms than at 25 and you should be feeling better. I know we'll be happy to help you any way we can.

If everyone thinks alike, then someone isn't thinking.
Everyone knows something, together we could know everything.
12-18-2014 12:13 AM
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DariaVader Offline
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Post: #16
RE: Thoughts on adjusting own pressure?
(12-17-2014 10:32 PM)sleepypaul Wrote:  I am a back sleeper. I know I do occasionally sleep on my side but I can't fall asleep in that position. At least on my back, my mask doesn't blow onto my wife. However, I favor my left side when I do side sleep and then the mask vents directly at my wife.

Some masks don't vent directly like that. I use nasal pillows - started with the Swift FX for her, and the venting from it woke me, caused really really puffy eyes, and in general bothered the crap out of me. After reading here, I switched to the P10 airfit for her and it vents gently and diffused. It's a lot better for me. I don't know which FFMs are better for venting, but I would bet there are some. I will need to find out. When I can get a new mask in 4 mo, going to want to get one in case i need it for upper resp infection - although I have already weathered one fine with the pillows.
12-18-2014 01:38 AM
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GeoffD Offline

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Posts: 194
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Machine: ResMed Airsense 10 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed AirFit P10
Humidifier: Integral + ClimateLine
CPAP Pressure: 14-17
CPAP Software: ResScan

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Sex: Male
Location: New England

Post: #17
RE: Thoughts on adjusting own pressure?
(12-16-2014 05:48 PM)zonk Wrote:  Ask the doctor to write you a script for "S9 AutoSet" and include "dispense as written"

The AutoSet take all the guess work out of the equation and make life that much easier

That's what I'd suggest.

The sleep center somehow came up with an Rx for a constant pressure of 17 cm-H2O. My DME gave me a ResMed S9 AutoSet. From advice here, I grabbed the ResMed ResScan software, started collecting data, and put the machine in AutoSet mode gradually backing off the lower bound pressure. I did this with the full knowledge of the nurse practitioner at the sleep center. I could probably continue backing off the pressure but I found a configuration that works for me. I stopped looking at the data on the SD card because the AHI number for the night displayed by the machine is enough information to know the settings are still working.

My opinion:
If you don't have an AutoSet machine with an SD card to look at the data in detail, it's really hard to determine what works and what doesn't work. Get your Rx changed. If they don't cooperate and you can afford it, go to Supplier #2 and buy your own AutoSet machine. I have an S9 AutoSet, humidifier, and ClimateLine hose on a UPS truck right now for $699. You can get a used one from them and re-use your humidifier and hose for a lot less. You can also find them on CraigsList for cheap if you're willing to risk not having any warranty.
12-18-2014 10:04 AM
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PsychoMike Offline

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Post: #18
RE: Thoughts on adjusting own pressure?
Yes, you can adjust the settings yourself....we have a link you can use to get the appropriate manual for your machine. I would suggest that if you are going to adjust your own pressure (you need a data recording CPAP so you can see what the changes do for your therapy by using a program like Sleephead) you give it at least a week between changes to see what it does for you. A couple days isn't long enough to keep a bad night sleep from skewing the data.

Cheers and good sleeping Wink
12-18-2014 01:03 PM
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Ghost1958 Offline

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Posts: 957
Joined: Aug 2014

Machine: PRS1 Series Sixty Auto Aflex
Mask Type: Nasal mask
Mask Make & Model: F&P Eson
Humidifier: PRS1 with Heated Hose
CPAP Pressure: 10.5 min 16 max
CPAP Software: SleepyHead EncoreBasic

Other Comments: Moderate to Severe SA Obstructive. Rapid O2 desat off the machine.

Sex: Male
Location: KY

Post: #19
RE: Thoughts on adjusting own pressure?
I have not been able to get that first morning after cpap WOW feeling.....well after the first morning. I wake up alert and rested no daytime sleepiness after the first months sleep debt payback for about a week but not that supercharged feeling of the first morning.

And I run AHI of less than 1 now with the Eson nasal mask. BTW it wont blow air on anything with the diffuser system it has. And its silent so your wife could sleep in the same room again LOL.

But I digress. Yep you will need to be able to run software and set your own pressures based on that. But as to that initial WOW feeling I have my own guess on that.

Depending on how bad you were and how long you suffered thru it with SA, the first good nights sleep with plenty of O2 to the brain etc makes such a drastic difference its like being tossed in cold water when you wake up.

After that though you feel fine, rested, alert, etc that being normal instead of a dead person walking becomes normal to you.
In other words WOW becomes the new norm for you. Just my guess.
12-18-2014 02:38 PM
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Galactus Online

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Posts: 1,388
Joined: Jan 2014

Machine: Phillips Respironics System One PRS1 DS760P Auto BiPAP
Mask Type: Nasal pillows
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: System One Heated Humidifier + Climate Line
CPAP Pressure: E/I 13/20 PS 4/7 BiFlex 3
CPAP Software: SleepyHead EncoreBasic

Other Comments: Sleep can be a good thing.

Sex: Male
Location: USA

Post: #20
RE: Thoughts on adjusting own pressure?
SleepyPaul has an S9 Elite, am I correct that this is a data capable CPAP? I believed it was but I see a few insisting he needs a data capable APAP, and some others indicating he needs a data capable machine. Am I mistaken that this unit is data capable? Just checking.

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Everyone knows something, together we could know everything.
12-18-2014 06:32 PM
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