Help Newbie Can't get used to CPAP

[komomai]

Aloha All, I'm new to the site and looking for some kind of guidance with this CPAP. Unfortunately I'm living here in Okinawa, Japan and seeing Japanese Doctors, so there is most likely some translation problems. They have let me rent a Sleep Apnea | Philips Respironics System One with the soft-gel mask. I do have a humidifier but no heated hose. The issue that I have is I've only been able to wear it for one night which was the first night, every since then every night I put the mask on and try to sleep but all I can do is about a hour before I shoot out bed, feeling like I can't breathe stopping the machine and removing the mask. This plays havoc as I'm now awake at 2 o'clock in the morning and have to get up at 4:30 to do my Pertoneal Dialysis for my End Stage Renal Failure and go to work. I am able to get back to sleep without the CPAP machine and mask but I know that's not good for me as I'm really tired during the day. Also because I'm using the Japanese rental they have told me not to touch any of the settings on the machine. I really want this CPAP to work as I've heard my friends who use it swear by it. Help as I'm Sleepless In Okinawa.

[Pugsy]

What is the model number of your machine? 3 digit number on the bottom of the blower unit. May be preceded by DS or REF. Also has an 8 digit number on the same sticker that likely starts with 2012.....
Do you know what the pressure settings are?
Do you use the ramp feature?

[komomai]

Aloha Pugsy, 3 digit number is REF 556P, the 8 digit number is 20120716. I also just downloaded Sleepy Head and this is what it says. Philips Respironics
System One 556P
RemStar Auto with A-Flex
Mode: APAP 4-15cmH2O

First Last Days AHI Machine Mode Pr. Rel. Min Pres. Max Pres.
9/25/2012 9/27/2012 3 4.81 PRS1 Auto A-Flex x2 4.00 15.00

I don't know what my pressure setting is, also don't know if I'm using the ramp feature.
The Japanese are pretty funny they do not want me to touch anything on the PRS1 except the on/off button in others words they don't want me adjusting anything. I really appreciate your responding and trying to help. Mahalo.

[Pugsy]

It appears that your minimum pressure is 4 cm and the maximum is 15.
I would need to see the pressure graph to see if ramp is being used.
I would suspect not with the minimum pressure being 4 cm. If ramp is used in the clinical menu it will be turned on and a time limit for ramp will be set. The default time is 45 minutes I think.
You don't have to change anything but you need to be able to go look to see what your settings are.
This link should get you into the clinical menu to see the settings.
http://www.apneaboard.com/pr-system-one ... structions

SleepyHead should work with the 556 model. If it was a 560 model SleepyHead won't work.
I have links for SleepyHead in my signature line. Go ahead and download and install it and see if you get the full reports.
If you don't send me a private message and I will get you some software that will work.
I don't know what the "6" in the 556 means.

If you are spending much time at the minimum pressure of 4 cm then that could very well explain the feelings of suffocation.
Many people find that there simply doesn't feel like enough air is moving at that setting.
So let's look at your reports and see if you are spending much time at 4 cm or if something else is going on to cause you discomfort after an hour or so on the machine.

I suspect that the minimum pressure is the bulk of the problem.
Number 1 while we technically won't suffocate at that pressure for many people it sure feels like it. Remedy is to increase the pressure to a more comfortable 5 or 6 cm.
Number 2...that minimum of 4 cm may be too low for the machine to be able to respond to any apnea events in a timely manner.
The machine doesn't go from 4 to 15 in a blink of an eye. Instead it takes its time and goes up in stages and tests things along the way and often apnea events can come and go while the machine is "testing" things. The minimum pressure setting is much more important than the maximum setting.
Remedy is to evaluate the pressure needs with the reports to see if untreated apneas are causing the suffocation feeling and likely increase the minimum pressure.

Regarding them not wanting you to change anything.....well...they aren't using the machine and they aren't having problems and they aren't missing sleep and they are doing you a disservice if there are possible changes available that would enable you to have a better chance of having success with the machine.

So...let's look at some reports and consider your needs and your options.
If you aren't comfortable with changing the pressure yourself then you need to make them do it (assuming that is what needs to be done and I would bet money on it).

[Pugsy]

Oh, I forgot.. With the SleepyHead install....if your computer is Vista or Windows 7....when you go to install the program instead of double click to start the install do a right click of the mouse over the setup files and choose "run as administrator" from the menu line. This saves a hassle when SleepyHead gets its first update.
If your computer is a Mac..there is a Mac version.
If your computer is a Mac and your machine is not compatible with SleepyHead then we have a problem because the alternative software doesn't have a Mac version.

[Xney]

I think you'll like 5cm or 6cm as your minimum a lot better. 4cm is like having a pillow over your face.

[komomai]

Aloha Pugsy and Xney,

I think I did finally figure out the menu and I think I adjusted it to start at 4.5. I did wear the mask longer and got some sleep, but we just experienced a big typhoon here and have been without power for 3 days, will see if the 4.5 does the trick and post my findings. Mahalo for all the help.

[Xney]

Yeah I wouldn't be afraid to go 5 or 6 if you don't have any type of respiratory or heart issues. It just depends on if you feel like you're getting enough air.

Also be aware that if you C-Flex or EPR (exhilation relief, aka pressure drop when you breathe out), at low pressures it may actually be a bad thing. You'll notice if it is because when you breathe out it's suddenly like breathing out against nothing. It's a comfort thing, so you can have it on or off as you like.

[lorraineg57]

Yeah I wouldn't be afraid to go 5 or 6 if you don't have any type of respiratory or heart issues. It just depends on if you feel like you're getting enough air.

Also be aware that if you C-Flex or EPR (exhilation relief, aka pressure drop when you breathe out), at low pressures it may actually be a bad thing. You'll notice if it is because when you breathe out it's suddenly like breathing out against nothing. It's a comfort thing, so you can have it on or off as you like.

Could you please explain this? I've been considering upping my beginning pressure from 4-5 or 6. Particularly the "if you don't have any type of respiratory or heart issues". Also, my S9 has the EPR feature but I have no idea if it's on or off. Or if it should be on or off? Are you saying having it on may be a bad thing?

[DavidCarolina]

Sorry youre battling so many things. Ive got another condition as well, needless to say its pretty stressful.

A couple ideas, for me anyway, the feeling of breathing really cool air makes it much less claustrophobic. I dont use a humidifier.

Having a fan or ac blow on you may help. A cold room.

Or possibly adding 02 to the cpap process?

[Xney]

Could you please explain this? I've been considering upping my beginning pressure from 4-5 or 6. Particularly the "if you don't have any type of respiratory or heart issues". Also, my S9 has the EPR feature but I have no idea if it's on or off. Or if it should be on or off? Are you saying having it on may be a bad thing?

This is just my opinion - not a doctor! Just a sleep apnea guy.

Some people have medical conditions like pulmonary problems or heart issues which make raising pressures without consulting their doctor a bad idea.

For most people, raising it a bit on their own if they can't discuss it with their doctor for days or weeks is probably fine. If it means the difference between using it or not using it, I'd certainly consider raising it, if you're not at risk as above. Getting used to the machine and pressure is the toughest part after finding the right mask. If your pressure is really low - like 4 or 5cm, then those pressures can feel very suffocating for some people. Rather than being nice because they're easy to breath with, they're actually a problem in that case. Then I think I'd raise the pressure if I can't discuss it. It's pretty safe but you never know..

You can check EPR yourself, even without access to the clinical settings. It's a comfort setting, something you can turn off to lower pressures when you breathe out. If you have a pressure of say 6, and the EPR is 2, it will make the pressure you breathe against you 6 - 2 = 4cm. Many people like the feature for good reason, but if you're pretty low already, it can create sort of this "dead space" feeling when you breathe out. In that case, you may want to turn it off.

EPR becomes more of a factor as you raise the pressure, because many people find it hard to breathe out against 10cm or 15cm - then the 2cm drop can be quite helpful. It just depends, for some people 6cm is VERY hard to breathe against. EPR is a "patient comfort" thing. More comfortable patient = higher and better use of CPAP.

If you put the minimum at 5cm and everything feels good, no need to touch it.

[komomai]

I copied this from the SleepyHead software. My question is did I adjust the pressure up to 4.5? My machine just has symbols on the menu and I see a lot of locked signs. Anybody know where I can get a pdf copy of the manual? Mine is printed in Japanese.
Channel Min Med 95% Max
PressurePressure (cmH20)
Avg: 8.00 4.50 8.00 11.00 12.70
Minute Vent.Minute Ventilation (L/min)
Avg: 7.45 0.00 7.00 12.12 46.75
Resp. RateRespiratory Rate (breaths/min)
Avg: 15.71 10.38 16.00 17.80 19.17
LeaksLeak Rate (L/min)
Avg: 13.74 0.00 13.00 25.75 26.00
Total LeaksTotal Leak Rate (L/min)
Avg: 31.02 16.00 30.00 41.75 42.00
SnoreSnore (unknown)
Avg: 1.12 0.00 0.00 9.25 10.00
Insp TimeInspiratory Time (seconds)
Avg: 1.61 0.40 1.52 2.12 3.60
Exp TimeExpiratory Time (seconds)
Avg: 2.24 0.20 2.12 2.92 4.46
Tidal VolumeTidal Volume (ml)
Avg: 490.17 13.33 440.00 900.00 3086.67

Machine Settings
Pr. ReliefPressure Relief A-Flex x2
HumidifierHumidifier Setting x3

[nanwilson]

Komomai
To get your machines instruction manual just go to apneaboard.com and download it. It is a free service for patients...... and it won't be in Japanease

[Pugsy]

My question is did I adjust the pressure up to 4.5?

Looks like you did.

Channel Min Med 95% Max

Avg: 8.00 4.50 8.00 11.00 12.70

Give me a minute and I will send you a link where you can download the manual direct.
The apneaboard.com doesn't have a direct download for your machine. You have to request it and then they send it to you.
They have some direct downloads available but not yours.

[lorraineg57]

Could you please explain this? I've been considering upping my beginning pressure from 4-5 or 6. Particularly the "if you don't have any type of respiratory or heart issues". Also, my S9 has the EPR feature but I have no idea if it's on or off. Or if it should be on or off? Are you saying having it on may be a bad thing?

This is just my opinion - not a doctor! Just a sleep apnea guy.

Some people have medical conditions like pulmonary problems or heart issues which make raising pressures without consulting their doctor a bad idea.

For most people, raising it a bit on their own if they can't discuss it with their doctor for days or weeks is probably fine. If it means the difference between using it or not using it, I'd certainly consider raising it, if you're not at risk as above. Getting used to the machine and pressure is the toughest part after finding the right mask. If your pressure is really low - like 4 or 5cm, then those pressures can feel very suffocating for some people. Rather than being nice because they're easy to breath with, they're actually a problem in that case. Then I think I'd raise the pressure if I can't discuss it. It's pretty safe but you never know..

You can check EPR yourself, even without access to the clinical settings. It's a comfort setting, something you can turn off to lower pressures when you breathe out. If you have a pressure of say 6, and the EPR is 2, it will make the pressure you breathe against you 6 - 2 = 4cm. Many people like the feature for good reason, but if you're pretty low already, it can create sort of this "dead space" feeling when you breathe out. In that case, you may want to turn it off.

EPR becomes more of a factor as you raise the pressure, because many people find it hard to breathe out against 10cm or 15cm - then the 2cm drop can be quite helpful. It just depends, for some people 6cm is VERY hard to breathe against. EPR is a "patient comfort" thing. More comfortable patient = higher and better use of CPAP.

If you put the minimum at 5cm and everything feels good, no need to touch it.

Okay, I checked my settings and this is what I have:

Mode: CPAP
Set Pressure: 9
Max Ramp: 45 min
Start Pressure: 4.0
EPR: Fulltime
EPR level: Off
EPR Inhale: Med

So I'm not exactly sure if the EPR is on (EPR: Fulltime) or off (EPR level: Off)? Thanks so much for taking the time to explain all this.