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Adjusting your own CPAP machine
#41
(11-06-2015, 08:08 PM)usertc Wrote: She said I'll never get the migraines under control until I deal with the OSA.

I wish someone had told me that. I remember being in a doctors office 20 years ago complaining about chronic headaches and waking up in the middle of the night with my heart racing. It wasn't until just 4 years ago that a complaint of snoring and insomnia had a doctor send me for a sleep study. The CPAP machine finally took care of the headaches and got me off headache relief medications I no longer needed.

Quote:I've been averaging 3 or 4 hours per night on it,

That's never going to work. The best way to get adapted is to commit to using it all the time. There's a feedback loop between your brain and your blood oxygen level. When the oxygen level drops your brain wakes you up just enough to breathe. It's been trained to do this repeatedly, and often the CPAP machine alone is not enough to break that brain habit. Every time you sleep without the machine the brain goes "See, I told you it's not safe to let this guy fall asleep."

In addition to interfering with your sleep, it's damaging your cardiovascular system. Just a few short decades ago our parents, grandparents, and all their ancestors with sleep apnea had to live this way. We are so fortunate that don't have to do that.

I hope you can find the will power to get out of bed, take a break instead of de-masking, and go back to bed only when you're ready to mask up again. That's only way to re-train your brain. In just a few short weeks all your efforts will be rewarded. And the rewards will continue for the rest of your life.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#42
(11-07-2015, 12:34 PM)Sleepster Wrote: That's never going to work. The best way to get adapted is to commit to using it all the time. There's a feedback loop between your brain and your blood oxygen level. When the oxygen level drops your brain wakes you up just enough to breathe. It's been trained to do this repeatedly, and often the CPAP machine alone is not enough to break that brain habit. Every time you sleep without the machine the brain goes "See, I told you it's not safe to let this guy fall asleep."

In addition to interfering with your sleep, it's damaging your cardiovascular system. Just a few short decades ago our parents, grandparents, and all their ancestors with sleep apnea had to live this way. We are so fortunate that don't have to do that.

I hope you can find the will power to get out of bed, take a break instead of de-masking, and go back to bed only when you're ready to mask up again. That's only way to re-train your brain. In just a few short weeks all your efforts will be rewarded. And the rewards will continue for the rest of your life.

In my early days, I fell into that terrible trap too of waking up in the middle of the night and taking a CPAP break for the rest of the night. What a mistake. Like you said, the opposite is true. CPAP supplies lifesaving oxygen. Yes, it's a pain in the neck to use and get used to, but it simply extends the quality of life.

It took one year for me to settle in, and I'm still not where I want to be. A few hours without CPAP is deadly to me the following day. I'm a zombie -- functioning physically only.

I seem to have inherited sleep apnea from my grandfather, if that's possible. We share the same body style and similarly suddenly started going downhill fast at a certain age -- perplexing the doctors. It's not a CPAP machine, it's the breath of life from the heavens above! I still hate it, but I can't imagine where I'd be without it.

When sleeping, or even resting preparing for sleep, keep that CPAP on...
Sleep Apnea has given me a terrible memory. Please forgive me if I've repeated myself.
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#43
(11-07-2015, 12:34 PM)Sleepster Wrote:
(11-06-2015, 08:08 PM)usertc Wrote: She said I'll never get the migraines under control until I deal with the OSA.

I wish someone had told me that. I remember being in a doctors office 20 years ago complaining about chronic headaches and waking up in the middle of the night with my heart racing. It wasn't until just 4 years ago that a complaint of snoring and insomnia had a doctor send me for a sleep study. The CPAP machine finally took care of the headaches and got me off headache relief medications I no longer needed.

Quote:I've been averaging 3 or 4 hours per night on it,

That's never going to work. The best way to get adapted is to commit to using it all the time. There's a feedback loop between your brain and your blood oxygen level. When the oxygen level drops your brain wakes you up just enough to breathe. It's been trained to do this repeatedly, and often the CPAP machine alone is not enough to break that brain habit. Every time you sleep without the machine the brain goes "See, I told you it's not safe to let this guy fall asleep."

In addition to interfering with your sleep, it's damaging your cardiovascular system. Just a few short decades ago our parents, grandparents, and all their ancestors with sleep apnea had to live this way. We are so fortunate that don't have to do that.

I hope you can find the will power to get out of bed, take a break instead of de-masking, and go back to bed only when you're ready to mask up again. That's only way to re-train your brain. In just a few short weeks all your efforts will be rewarded. And the rewards will continue for the rest of your life.

I understand that. I've only had it a week and at the moment I'm struggling with rainout. I wake up with my tubing and mask full of water with drops running out of the mask down my cheeks. I have to take the mask off at that point or inhale water, and with the tubing so full of water, its not so easy to just roll over and go back to sleep. I feel pretty confident that I will be able to get used to it and sleep well once the rainout isn't waking me up.
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#44
Turn the humidifier down. Also, route your hose so the water has to go over a "hump" to get to you.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#45
(11-03-2015, 02:49 PM)jec335 Wrote:
(11-03-2015, 11:35 AM)bwexler Wrote: I for one would never advocate simply changing the settings blindly.
First step is to get software like Sleepyhead, Resscan, etc and monitor your therapy for at least a week. Then assuming you have an auto adjusting machine, make adjustments to the upper and lower limits based on your data. Comfort settings are more subjective. Having led a sheltered life I have never heard of your machine. It appears to be a straight CPAP, which I would never own. It also may not have software available to monitor the effectiveness of your therapy. Again, something I would never own.
So in your situation no one, not you or your doctor, has the ability to verify effective therapy or proper settings.
I am glad you are happy with your machine. Software is helpful and doctors and Respiratory Therapists use it every day to make decisions to successfully treat sleep disordered breathing. I am involved in these decisions every day as a RRT for over 30 years. I am also a registered in sleep.
I was just putting out a friendly reminder to those new to sleep apnea and sleep disordered breathing that there are other things to be considered and software and self monitoring is not always the best answer.



(11-03-2015, 12:06 PM)coffeegal33 Wrote:
Quote:I have to say something about this. Although I know it seems harmless enough, it is not harmless!



Its not illegal. My 4 year old machine just died. I bought a used machine and am setting the settings to what they should be for me. Sometimes we have to do that. I can't tell you how unhelpful our "local" supply co has been. I called 3 pm on Friday to say my machine died. The lady said she wasn't sure she could get my presc on a Friday before 5. She'll call me back on Monday. Well, its Tuesday and no call. Glad I got a new one and am using it. If she doesn't call by Wed, I'm making an official complaint. They are horrible. NorthEast Wisconsin.

There is surely a large host of things going on with local DME. If you get a good one you are lucky.

Thanks for this information. Mine died (for a minute) I was told I would need to have a new study before anyone will touch it. Well, I don't like to sleep without it. Found a used one I'm going to purchase as a backup.
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#46
(11-06-2015, 08:08 PM)usertc Wrote:
(11-06-2015, 04:24 PM)jec335 Wrote:
(11-06-2015, 10:50 AM)usertc Wrote: I'm new to an Autopap, which has auto ramping, pressure relief, and automatic climate control for humidity and tube temperature., as well as cellular and wireless service so my data is automatically uploaded to the MyAir site and my dr can look at it and adjust my settings remotely.

I was also told by the supplier how to change certain settings that I could tweak for comfort. I was also given a Resmed pamphlet with my manual with a list of problems and how to change the settings for comfort level.

So some of us that talk about changing settings have been given permission by our drs and instruction to do so. The one thing I do not change is the maximum pressure, but with the autopap, I'm staying well below the maximum anyway.

What do you think of pressure relief?? It drives me crazy.

I don't think I could get used to using a machine without it. I feel very claustrophobic when I try to exhale against the full pressure. I feel fairly comfortable with the pressure relief as long as my minimal pressure is turned up, otherwise I feel like a fish out of water.

I was first diagnosed in 2009 with AHI=39 and had an autopap without pressure relief. I tried for about 6 months to get used to it, but the longer I used it, the worse I felt. I finally gave up and have been noncompliant for 6 years. I've had chronic migraines through most of this and my neurologist finally talked me into trying it again. She said I'll never get the migraines under control until I deal with the OSA. My new sleep study was AHI= 50. I've only had it for a week, so we'll see how it goes. I've been averaging 3 or 4 hours per night on it, but it's been rainout waking me up, so I am fiddling with humidity and temperature settings with my drs permission.

I think flex or EPR sometimes makes it harder to breathe. I would say 95-99% of non-tolerant cpap users feel better when I turn the flex to 1 or off. I understand the concept is appealing and sometimes works well for people with COPD on lower pressures but I think what happens is it creates a more unnatural feeling exhale which translates to "I can't breathe". the drop in pressure on every exhaled breath feels unnatural, not smooth like normal breathing and if you are already focused on this aspect it stands out like a sore thumb and makes it (cpap) intolerable. This is especially or more noticeable on higher pressure settings.
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#47
(11-07-2015, 08:32 PM)usertc Wrote:
(11-07-2015, 12:34 PM)Sleepster Wrote:
(11-06-2015, 08:08 PM)usertc Wrote: She said I'll never get the migraines under control until I deal with the OSA.

I wish someone had told me that. I remember being in a doctors office 20 years ago complaining about chronic headaches and waking up in the middle of the night with my heart racing. It wasn't until just 4 years ago that a complaint of snoring and insomnia had a doctor send me for a sleep study. The CPAP machine finally took care of the headaches and got me off headache relief medications I no longer needed.

Quote:I've been averaging 3 or 4 hours per night on it,

That's never going to work. The best way to get adapted is to commit to using it all the time. There's a feedback loop between your brain and your blood oxygen level. When the oxygen level drops your brain wakes you up just enough to breathe. It's been trained to do this repeatedly, and often the CPAP machine alone is not enough to break that brain habit. Every time you sleep without the machine the brain goes "See, I told you it's not safe to let this guy fall asleep."

In addition to interfering with your sleep, it's damaging your cardiovascular system. Just a few short decades ago our parents, grandparents, and all their ancestors with sleep apnea had to live this way. We are so fortunate that don't have to do that.

I hope you can find the will power to get out of bed, take a break instead of de-masking, and go back to bed only when you're ready to mask up again. That's only way to re-train your brain. In just a few short weeks all your efforts will be rewarded. And the rewards will continue for the rest of your life.

I understand that. I've only had it a week and at the moment I'm struggling with rainout. I wake up with my tubing and mask full of water with drops running out of the mask down my cheeks. I have to take the mask off at that point or inhale water, and with the tubing so full of water, its not so easy to just roll over and go back to sleep. I feel pretty confident that I will be able to get used to it and sleep well once the rainout isn't waking me up.

yes, turn the humidifier down. another consideration is the difference between humidifier temp and room temp, the greater the difference or temp gradient the more rain out. You can use a tube cover, heated tubing or change room temp to help. Also not a good idea to place cpap unit on shelf or table that is quite a bit higher than your head! Smile
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#48
(11-08-2015, 11:31 AM)jec335 Wrote:
(11-06-2015, 08:08 PM)usertc Wrote: I don't think I could get used to using a machine without it. I feel very claustrophobic when I try to exhale against the full pressure. I feel fairly comfortable with the pressure relief as long as my minimal pressure is turned up, otherwise I feel like a fish out of water.

I was first diagnosed in 2009 with AHI=39 and had an autopap without pressure relief. I tried for about 6 months to get used to it, but the longer I used it, the worse I felt. I finally gave up and have been noncompliant for 6 years. I've had chronic migraines through most of this and my neurologist finally talked me into trying it again. She said I'll never get the migraines under control until I deal with the OSA. My new sleep study was AHI= 50. I've only had it for a week, so we'll see how it goes. I've been averaging 3 or 4 hours per night on it, but it's been rainout waking me up, so I am fiddling with humidity and temperature settings with my drs permission.

I think flex or EPR sometimes makes it harder to breathe. I would say 95-99% of non-tolerant cpap users feel better when I turn the flex to 1 or off. I understand the concept is appealing and sometimes works well for people with COPD on lower pressures but I think what happens is it creates a more unnatural feeling exhale which translates to "I can't breathe". the drop in pressure on every exhaled breath feels unnatural, not smooth like normal breathing and if you are already focused on this aspect it stands out like a sore thumb and makes it (cpap) intolerable. This is especially or more noticeable on higher pressure settings.

jec335,

Your comments make it appear to me that you need to use a newer generation PAP for a while. I have owned a Resmed S8 auto bilevel and am currently using a Resmed S9 auto bilevel. My prescription is bilevel at 16 EPAP and 20 IPAP. With the S8 I had to do some minor adjusting of cycle and Ti min and max to get the machine to stay synced with my breathing. The Ti min and Ti max that I got it with were what I consider rather idiotic. Any way, once I made the adjustments the machine stayed synced up all of the time and the transitions were smooth.

I got an S9 auto bilevel and did not have to adjust the Ti or cycle. I turned on Easy Breathe and my EPAP and IPAP transitions were smooth as silk. It is very difficult to feel when the transitions occur. Except for the mask and hose, it is like breathing without a machine. I sometimes need to put my hand in front of the mask vent to find out if the machine is running.

As you can see, I have higher pressure than most and I have changed to auto bilevel due to the onset of aerophagia. I have not found the problems that you describe with using exhalation pressure relief on your older machine. In fact, I have found it quite comfortable. I will say one thing with regard to Resmed. I think they started improving the transition comfort on the bilevel machines first where it was probably needed the most and then once they got it working well there they moved it out to the rest of the machines except for maybe the ones with a backup rate.

This changes nothing for the pressure relief on your machine but I think that newer machines have been improved with regard to the implementation of their exhalation pressure relief.

Best Regards,

PaytonA
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