hello, and is this the usual fare?

tansey · Post by **tansey** » Fri Jul 25, 2008 10:27 am

Hi, I'm new to the forum but not to the OSA. I've been on cpap for 5 years with a setting of 7 cm h2o. About 3 months ago I began to totally stop breathing with the cpap on, so I bumped it up to 9, fine for a few weeks then I quit breathing again so I bumped it up to 10.5 and it is working well now, for 3 weeks. During this time I've felt pretty bad- or should I say pretty nothing, my brain just fells tired and empty and zero motivation, I feel it is lack of oxygen or too much co2. Is this to be expected after a while on the same setting. Is there a danger in setting the wind too strong?
I hope I am not irritating with the newbie questions. I am kind of on my own with all this as I have no insurance and I can only see the Dr. once a year.
Also I am an avid cruising sailor and I have everything set up 12v solar powered and it works very well, I would be happy to share any info on setting up cpap off grid on a shoestring budget.
All the best, Tansey

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CPAPopedia Keywords Contained In This Post (Click For Definition): newbie, CPAP

Wulfman · Post by **Wulfman** » Fri Jul 25, 2008 10:36 am

Welcome to the forum.

It would be a good idea if you could add your equipment to your profile so we can tell what you're using.

If you're wearing a nasal mask, you want to be sure you're not mouth-leaking your therapy air. That's one of the biggest problems we see with those who use them. Many people use tape or Polident adhesive denture strips to seal their lips. Most chin straps aren't effective, but some who use the Topaz say that it's the best one.

Theoretically, a pressure of 10.5 is not necessarily that high and shouldn't be a problem, but if you're still mouth-leaking that would explain your symptoms.

Den

JeffH · Post by **JeffH** » Fri Jul 25, 2008 10:44 am

You just told my story.

Found out I was mouth leaking and therefore getting no therapy. I'd bet you $20 you are too. I now seal my mouth with Polident strips and wear a headband around my mouth and I don't mouth leak or suffer from puffed out cheeks (a by product of mouth sealing)

Good luck

JeffH

ozij · Post by **ozij** » Fri Jul 25, 2008 10:45 am

Is this to be expected after a while on the same setting

.
Our bodies change, and for some of us, pressure needs change as well. But I wouldn't say this is the usual fare. If you mean you've been feeling pretty bad during these three week - or for the last three months, then I suggest you go a doctor, despite the lack of insurance. I'm all for finding out the proper pressure by yourself - but self diagnosis may be dangerous. You should rule out the development or emergence of any other kind of health problem. When you say you stop breathing - is that how you feel, or is that what someone else observed? Lung problems and heart problems may make you feel breathless when you lie down.

Is there a danger in setting the wind too strong?

People may stop breathing because their airway collapses - but they may also stop breathing in response to pressure that is too high.

I hope I am not irritating with the newbie questions.

Welcome to the forum, tansey. You're not irritating at all. None of us were born using CPAP, most of us were new when we came here - ask as much as you need to understand your therapy - that's what this forum is about.

Good luck
O.

tansey · Post by **tansey** » Fri Jul 25, 2008 12:39 pm

Thanks for the reply Wulfman. I am wearing the nasal mask, Sleepnet gel, but I don't think I am mouth leaking. I am very aware of that. Sometimes I open my mouth to feel the air rushing from my throat and to be sure the cpap is still functioning.
I don't need the humidifiers any more but I did the first 2 winters. I will list my equipment in my profile.
I am using a Breas PV 10 cpap, Swedish made. It is the only one I am able to adjust myself. I have 2 Remstars but I see no way to adjust them.
Tansey

Wulfman · Post by **Wulfman** » Fri Jul 25, 2008 12:51 pm

tansey wrote:Thanks for the reply Wulfman. I am wearing the nasal mask, Sleepnet gel, but I don't think I am mouth leaking. I am very aware of that. Sometimes I open my mouth to feel the air rushing from my throat and to be sure the cpap is still functioning.
I don't need the humidifiers any more but I did the first 2 winters. I will list my equipment in my profile.
I am using a Breas PV 10 cpap, Swedish made. It is the only one I am able to adjust myself. I have 2 Remstars but I see no way to adjust them.
Tansey

Oh.....you might be surprised. Might depend on how OLD they are, but I have quite a few service manuals (in .pdf format) stashed away.

Which ones are they?

Den

Babette · Post by **Babette** » Fri Jul 25, 2008 12:55 pm

Shoot take it easy on the old guy. He's sleep deprived.

Here's a pile, buddy:

cpaptalk-faq.php?FCID=48#48

Scroll through these links - you'll probably find what you're looking for:

viewtopic/t32562/Need-setup-directions- ... -tank.html

viewtopic/t32637/Remstar-Setup-Instructions.html

viewtopic/t21227/In-desperate-need-of-h ... -read.html

Good luck!!!
Babs

tansey · Post by **tansey** » Fri Jul 25, 2008 1:39 pm

Thank you all for the warm welcome and excellant advice. Ozij. I actually totally stop breathing, I awake totally out of air and have to force myself to make the conscious decision to start breathing again, it is almost like staying at the bottom of a swiming pool too long and barely being able to make it to the top before your lungs burst, It's a little scary, I use to sleep sitting up with my head on a table until I got the cpap, I was afraid I might not wake up. I wonder if I could have some nuro problems as well.
Thanks for those URLs Babbett, I will visit them this evening.Wulfman, the 2 Rems I have are an older, my first one, Remstar LX, the other is a Remstar/Pro with smart card. I bought it at a thrift shop for $1. Hot humidifier, all the bells and whistles and 5 new masks and it was set on 7. The only thing missing was the power cord which I easily made up, the manuel, and it had only 220 hours on it. A real find. I want to set it to 10.5
I'm so glad I came here, i only know one other like us and after sveral years he had the surgery, and it was succeessful.
Tansey

Wulfman · Post by **Wulfman** » Fri Jul 25, 2008 1:48 pm

tansey wrote:Thank you all for the warm welcome and excellant advice. Ozij. I actually totally stop breathing, I awake totally out of air and have to force myself to make the conscious decision to start breathing again, it is almost like staying at the bottom of a swiming pool too long and barely being able to make it to the top before your lungs burst, It's a little scary, I use to sleep sitting up with my head on a table until I got the cpap, I was afraid I might not wake up. I wonder if I could have some nuro problems as well.
Thanks for those URLs Babbett, I will visit them this evening.Wulfman, the 2 Rems I have are an older, my first one, Remstar LX, the other is a Remstar/Pro with smart card. I bought it at a thrift shop for $1. Hot humidifier, all the bells and whistles and 5 new masks and it was set on 7. The only thing missing was the power cord which I easily made up, the manuel, and it had only 220 hours on it. A real find. I want to set it to 10.5
I'm so glad I came here, i only know one other like us and after sveral years he had the surgery, and it was succeessful.
Tansey

For the REMstar Pro, the following instructions for the Pro 2 will work. If you'll PM me with your e-mail address, I can send you the manual (2 MB) for the LX.

Den

REMstar Pro 2 Setup

When in the Setup Menu, the humidifier ^ and ramp v buttons operate as up and down keys to change the settings, the left/right user buttons < > allow you to go to the previous/next question or setting, and the pressure start/stop button is used to exit the Setup Menu. Holding the humidifier or ramp buttons down will cause the values to change more quickly.

To enter the Therapy Setup Menu, hold the two top user buttons < > down while plugging in the power cord.
Continue holding the buttons down until the REMstar Pro 2 with C-Flex beeps twice. (about 5 seconds)

Note: The word "setup" will appear on all of the screens indicating that you are in the Therapy Setup Menu.
If you press the Pressure start/stop button, you will exit the Setup Menu.

a. Compliance hours: (recommend leaving alone)
Select next setting with >

b. Therapy mode: (CPAP or CFLE) select with ^ or v
Select next setting with >

c. CPAP pressure setting: Select with ^ or v
Select next setting with >

d. C-Flex mode (if you chose CFLE mode): Select setting 1, 2 or 3 with ^
Select next setting with >

e: Ramp time setting: Select with ^ or v
(ramp time will be turned off with a setting of 0)
Select next setting with >

f. Ramp pressure setting: Select with ^ or v
Select next setting with >

g. Patient disconnect setting: 1 = on 0 = off Select with ^ or v
Select next setting with >

h. Buttons lights setting: 1 = on 0 = off Select with ^ or v
(Last setting. Use On/Off button to exit Setup)

Slinky · Post by **Slinky** » Fri Jul 25, 2008 1:57 pm

Ozij gave some good advice.

The stoppage of breathing COULD be centrally induced apneas due to too high a pressure setting now.

crossfit · Post by **crossfit** » Fri Jul 25, 2008 2:11 pm

Tansy, welcome! Can you start another thread and explain your solar set up? I am very interested and think others will be too.

tansey · Post by **tansey** » Fri Jul 25, 2008 2:28 pm

Slinky wrote:Ozij gave some good advice.

The stoppage of breathing COULD be centrally induced apneas due to too high a pressure setting now.

I don't think that's the case because I stopped breathing at 7, 9 worked for a couple of weeks then stopped and now at 10.5 everything seems OK. Fingers crossed, I feel like a fox trying to figure out my own hen house
Do any of you wake up as I described, having stopped for long enough to be suffocating and gasping for a first breath again?

Banned · Post by **Banned** » Fri Jul 25, 2008 5:51 pm

tansey wrote: I actually totally stop breathing, I awake totally out of air and have to force myself to make the conscious decision to start breathing again, it is almost like staying at the bottom of a swiming pool too long and barely being able to make it to the top before your lungs burst, It's a little scary, I use to sleep sitting up with my head on a table until I got the cpap, I was afraid I might not wake up. I wonder if I could have some nuro problems as well.

There is nothing a CPAP machine will do at this point. You have failed CPAP therapy. Your Dr. was an idiot to not put you on a bilevel in the beginning. At this point it is likely you would find some relief with BiPAP, and eventually that will fail also.

Banned

tansey · Post by **tansey** » Fri Jul 25, 2008 6:17 pm

I disagree with you Banned. I was "at this point" in 2002 and had 5 restful years before I had to increase pressure just recently. The increase seems to be working, and I mainly care about now.

Banned · Post by **Banned** » Fri Jul 25, 2008 6:28 pm

If you're happy, I'm happy!

Banned

Mask

Additional Comments: Equipment isn't correct, S9 ASV w/H5i