Hello, fellow apnea heads!
First of all, I wanted to thank those who took the time to answer my last post. Whenever I log into this website, I feel like I'm part of a team. I have yet to find a doctor that I feel is as vested in helping me, as are the good people that frequent this forum. Some of us have some off-the-wall opinions, theories and information, but the intentions are always good. And, I have learned that what works for some might not work for others... but it might.
Before I get to my recent Auto Bi-Pap epiphany, let me state that I am not any sort of doctor, technician or other type associated with medicine. I make jet engine parts that keep you safely in the air while you and/or your loved ones are zooming around the globe. I have to pay attention to EVERY part EVERY day. If one of my parts doesn't look right, I have to fix it before I box it, even if that fix is going to take more than 15 minutes and I have another part waiting to be inspected. Engine parts and people are not exactly analogous, but professionalism is professionalism. The FAA would shut me down in a heartbeat if I performed my duties well... occassionally; NO EXCUSES! I think many (not all or even most) modern doctors abdicate their responsibilities on a daily basis, and I have a major chip on my shoulder about it!
For example, I live in Texas. I flew to Stanford University to meet with a LEADING surgeon for an evaluation of my apnea and to secure his recommendation on any appropriate surgical procedures to improve my condition. After swaggering into the examination room an hour late with no explanation or apology, he said: "So, why are you here?" Well, I have sleep apnea and you're renowned as a leading surgeon. "How do you know you have sleep apnea?" Well, it says it on that sleep study you have attached to my chart, and in the pages of data that my sleep doctor forwarded to you.
I then had my throat scoped. He came back into the examination room a half-hour later and recommended maxillary-mandibular advancement (MMA). "You'll stay for three days to confirm that any bleeding has been controlled, and that you can swallow and defecate. Expect no solid food for 6-8 weeks. You might not ever be able to open your mouth fully again, and it my change how you look, but you'll probably look better. Sometimes, you might need a year or two of orthodontics to get your bite back. Plan on staying for at least three days. You should arrange some aftercare in Dallas, in case there are any complications. Okay? So, you decide what you want to do, and you can schedule at the front desk. If you have any further questions, feel free to contact my assistant. Nice meeting you, John." And he was gone. And my name is Alan.
That was today's rant, free of charge. But, believe it or not, the purpose of this post is to let you all know of an epiphany I had with my Auto Bi-Pap, and to implore those of you who are frustrated with your progress to secure a data-capable xPAP, software and a card reader. EncoreViewer will at least let you see what's going on at night, and help you to ask potentionally fruitful questions to your physician. The truly desperate, crafty, poor and insuranceless can learn to set their own equipment. Of course, this can be seriously dangerous, and physicians and DME's have some very good medical reasons to be against it... and some very self-serving reasons to be against it. In my case, I had an apathetic physician who prescribed to me an Auto Bi-Pap with a wide-open pressure range of 4cm - 20cm. You can't get much more loosey-goosey than that.
For weeks the machine was averaging IPAP/EPAP numbers of approximately 10.5/7.0, with a maximum of 12.5/9.0. I wasn't feeling any better and the doctor kept telling me to give it time. He changed the Pressure Support (PS) a number of times between 3 and 8. I started with a PS of 3. He moved it to 8 and I felt even worse. He said give it some time. He then went back to 3. All the while, my expensive Auto Bi-Pap machine was generating AHI numbers between 8 and 15 every night (<5 is optimal), which I didn't know because I didn't have the software to see it. Those numbers, although way better than my sleep study result of 56, were still leaving me feeling quite tired. Each visit to the doctor was at least $75.00 out-of-pocket, and there were many visits. He finally told me to just give it some time one too many times and I made it my mission to learn how to change the settings of my machine myself, and to secure the software to read the data. At least in my case, that was a very good move, because I was motivated to study the data way more thoroughly than my doctor. I didn't understand the data as well as him, but ants can carry virtual trees on their backs when they need to.
What I noticed was that the machine was dwelling at fairly low pressures for much of the night to keep me comfortable, and the algorithm seemed to be okay with this, even though the higher pressures were eliminating more of the OA's and hypopneas. For example, an 8-hour night is 480 minutes. When I looked at the IPAP data, the machine spent 300 minutes at a pressure of 9 and the hypopneas were at 6.3; however, the machine spent 100 minutes at a pressure 10 with hypopneas at 4.7; the machine then spent 80 minutes at a pressure of 11 with hypopneas all the way down to 2. The EPAP situation was much the same thing! This meant that for 63% of the night, the machine was allowing average hypopneas of 6.3/hour, but for 16% of the night the machine was only allowing average hypopneas of 2/hour -- a much better number. The point is that either the machine was broken, the algorithm is flawed, the algorithm was contraindicated for me, or my physician is completely ignorant of how an Auto Bi-Pap is supposed to work. If the doctor had scrutinized the data as I did, he would have learned that something in the chain wasn't working. Giving it more time was not going to help me, but it certainly helped the doctor's bottom line.
I finally decided to take the machine off of auto mode. I put it into simple bi-level mode with IPAP/EPAP of 13/10 and a 15 minute ramp time to allow me to fall asleep with slightly lower pressures. The result for the first night was ZERO hypopneas and 2.4 OA's for an AHI of 2.4, the best I have ever managed with my machine.
I spoke with a wonderful RT at the equipment manufacturer who showed what I felt like was a genuine interest in my situation. For medical and legal reasons, he couldn't comment directly on my health, but he urged me to take the machine to a DME to have its pressures checked. He then gave me his contact information and asked that the DME forward him a months worth of data from my machine. He said he would evaluate the data and advise the DME, and then the DME could interface with me. I then located an equally helpful DME, and everything is in the works.
Anyone who made it to the end of this post is probably ready for bed. Sleep long and prosper.
FFOGHORN
Auto BiPap: the good, the bad, the ugly
Auto BiPap: the good, the bad, the ugly
Sleep well and prosper,
FFOGHORN
FFOGHORN
Re: Auto BiPap: the good, the bad, the ugly
Right on, FfogHorn! I like your attitude and your philosophy! You are going to fit right in here, my man!
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- timbalionguy
- Posts: 888
- Joined: Mon Apr 27, 2009 8:31 pm
- Location: Reno, NV
Re: Auto BiPap: the good, the bad, the ugly
I'm not an MD, so take what I say with a grain of salt.
What you are experiencing with your bipap in auto mode is normal, considering the circumstances. The real problem is your machine is not set up properly.
The auto mode is designed to keep pressures lower when you are not experiencing hypopneias or apneias. The pressure is raised in response to these events until they stop happening.
For a given set of circumstances, there is a pressure at which the airway is kept open enough to avoid apneias. This pressure is (usually) fairly constant and is lower than the pressure needed to control hypopneias. Simple CPAP works initially by being set to a pressure a little above that which stops the apneias. It is usually set higher to also stop many of the hypopneias from happening as well. But for some people, the optimal apneia-stopping pressure level varies a lot, or many factors control how much pressure it takes to stop a hypopneia, and this pressure varies a lot. This is where the auto machines come in. They can adjust pressure upwards, but only when you need it (hopefully) when you are fast asleep.
As I am sure you have read here, a lot of people besides you were given machines that were initially set 'wide open'. Start pressure was so low that it would be like suffocating. Top pressures were never reached, or else they blew a mask set for lower pressures off your face. What is really happening is all those hypopneias at lower pressures is due to the machine having to increase pressure when a string of hypopneias began. The machine's algorithm proceeds slowly with pressure increases unless there is snoring.
When the start pressure is too low, a lot of events can occur while the machine is raising pressure. So in your case, the start pressure should have been more like 11 to allow the machine to quickly quench hypopneias without too much pressure increase. Essentially, you did a correct thing by setting your machine to 13 straight IPAP. You might now go back and try a start pressure of 11 in auto mode and see if that is effective as well.
What you are experiencing with your bipap in auto mode is normal, considering the circumstances. The real problem is your machine is not set up properly.
The auto mode is designed to keep pressures lower when you are not experiencing hypopneias or apneias. The pressure is raised in response to these events until they stop happening.
For a given set of circumstances, there is a pressure at which the airway is kept open enough to avoid apneias. This pressure is (usually) fairly constant and is lower than the pressure needed to control hypopneias. Simple CPAP works initially by being set to a pressure a little above that which stops the apneias. It is usually set higher to also stop many of the hypopneias from happening as well. But for some people, the optimal apneia-stopping pressure level varies a lot, or many factors control how much pressure it takes to stop a hypopneia, and this pressure varies a lot. This is where the auto machines come in. They can adjust pressure upwards, but only when you need it (hopefully) when you are fast asleep.
As I am sure you have read here, a lot of people besides you were given machines that were initially set 'wide open'. Start pressure was so low that it would be like suffocating. Top pressures were never reached, or else they blew a mask set for lower pressures off your face. What is really happening is all those hypopneias at lower pressures is due to the machine having to increase pressure when a string of hypopneias began. The machine's algorithm proceeds slowly with pressure increases unless there is snoring.
When the start pressure is too low, a lot of events can occur while the machine is raising pressure. So in your case, the start pressure should have been more like 11 to allow the machine to quickly quench hypopneias without too much pressure increase. Essentially, you did a correct thing by setting your machine to 13 straight IPAP. You might now go back and try a start pressure of 11 in auto mode and see if that is effective as well.
Lions can and do snore....
Re: Auto BiPap: the good, the bad, the ugly
Alrighty then -
viewtopic/t42679/viewtopic.php?f=1&t=42 ... 58#p375258
viewtopic/t42679/viewtopic.php?f=1&t=42 ... 58#p375258
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BeganCPAP31Jan2007;AHI<0.5
I have no doubt, how I sleep affects every waking moment.
I am making progress-NOW I remember that I can't remember

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Be your own healthcare advocate!
I have no doubt, how I sleep affects every waking moment.
I am making progress-NOW I remember that I can't remember

If this isn’t rocket science why are there so many spaceshots?
Be your own healthcare advocate!
Re: Auto BiPap: the good, the bad, the ugly
Hey, timbalionguy! Perhaps you should be an MD!!! I think you're 100% dead-on.
I was just resetting my Smart Card as your post came in. I'm still hoping to get some benefit out of the auto feature.
I feel terrifically sad for people who don't have the strength or knowledge to push through this thing called sleep apnea. What in the world are the doctors of this country thinking? Please complete your Epworth Scale today -- that will be $100.00 please.
I was just resetting my Smart Card as your post came in. I'm still hoping to get some benefit out of the auto feature.
I feel terrifically sad for people who don't have the strength or knowledge to push through this thing called sleep apnea. What in the world are the doctors of this country thinking? Please complete your Epworth Scale today -- that will be $100.00 please.
Sleep well and prosper,
FFOGHORN
FFOGHORN
Re: Auto BiPap: the good, the bad, the ugly
$$$$$$$.........Ka-Ching!FFOGHORN wrote:Hey, timbalionguy! Perhaps you should be an MD!!! I think you're 100% dead-on.
I was just resetting my Smart Card as your post came in. I'm still hoping to get some benefit out of the auto feature.
I feel terrifically sad for people who don't have the strength or knowledge to push through this thing called sleep apnea. What in the world are the doctors of this country thinking? Please complete your Epworth Scale today -- that will be $100.00 please.
Den
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
Re: Auto BiPap: the good, the bad, the ugly
I'm glad that you're still hanging around... and I'm glad that you're still trying FFoghorn