Opinions about self treating sleep apnea please.

Background:
I don't have insurance coverage for Sleep Apnea treatment. It's a long story but I chose poorly and have only major medical until 12-1-12.
3 weeks ago I bought what you all call a "brick" for on the cheap from craigslist. That got me started and I have also spent a LOT of time reading this forum and other good information on the internet.
Now I have bought a ResMed S9 Autoset and have a pretty good idea what all the acronyms mean and how to get the data out of it. I have a baseline sleep study report that shows AHI, RDI sleep stages etc.
I don't even know what DME stands for but from what I read here whatever a DME is it should not be trusted.
I do have a family practice doctor who is willing to review my data when I get it out of my S9. She is very bright and not too proud to consult when she doesn't know. She is willing to help me out because she knows I don't have insurance for this.
It also seems that everyone on this forum who has been at it awhile is tweaking their own treatment considerably while ignoring bad DME advice.
I have a good setup but I am about out of money. I don't have money for further studies to "set" my air numbers and my Fam Doc will help so I am not totally off the medical system grid.

The Question:
What do you all think of someone skipping the apparently untrustworthy DME and just tweaking my CPAP machine until I get good AHI numbers and stop falling asleep at stoplights? Aside from finding a mask that I can tolerate this CPAP thing seems pretty easy to get the hang of. Am I missing something? Do I really need a DME so that I can post here about all the dumb things they are telling me?

Your all smart, experienced and pretty nice to noobies making dumb mistakes. So I value your input. Thanks.

PS....I am sure there are some very competent DME's out there that could be a big help so I don't want to paint them all with the same brush. But obviously a lot of people here have had problems with some of the DMEs.

Go for it. You seem to have a good plan and know what you are doing.

49er

MrPresident wrote:Background:
I don't have insurance coverage for Sleep Apnea treatment. It's a long story but I chose poorly and have only major medical until 12-1-12.
3 weeks ago I bought what you all call a "brick" for on the cheap from craigslist. That got me started and I have also spent a LOT of time reading this forum and other good information on the internet.
Now I have bought a ResMed S9 Autoset and have a pretty good idea what all the acronyms mean and how to get the data out of it. I have a baseline sleep study report that shows AHI, RDI sleep stages etc.
I don't even know what DME stands for but from what I read here whatever a DME is it should not be trusted.
I do have a family practice doctor who is willing to review my data when I get it out of my S9. She is very bright and not too proud to consult when she doesn't know. She is willing to help me out because she knows I don't have insurance for this.
It also seems that everyone on this forum who has been at it awhile is tweaking their own treatment considerably while ignoring bad DME advice.
I have a good setup but I am about out of money. I don't have money for further studies to "set" my air numbers and my Fam Doc will help so I am not totally off the medical system grid.

The Question:
What do you all think of someone skipping the apparently untrustworthy DME and just tweaking my CPAP machine until I get good AHI numbers and stop falling asleep at stoplights? Aside from finding a mask that I can tolerate this CPAP thing seems pretty easy to get the hang of. Am I missing something? Do I really need a DME so that I can post here about all the dumb things they are telling me?

Your all smart, experienced and pretty nice to noobies making dumb mistakes. So I value your input. Thanks.

PS....I am sure there are some very competent DME's out there that could be a big help so I don't want to paint them all with the same brush. But obviously a lot of people here have had problems with some of the DMEs.

What do you want to know to treat yourself with the S9 Autoset?

If it's done right, it doesn't matter whether you, the DME, or the doctor manages it.

If it's done wrong, it doesn't matter whether you, the DME, or the doctor manages it.

It's not rocket science, but configuring and maintaining CPAP therapy isn't your typical "Joe Sixpack can't get it wrong" thing either. You do risk harm if you do it wrong.

I screwed mine up one time and got really sick before I figured out my CPAP wasn't working right.

Mr. President, I admire you doing the best you can to get CPAP going despite not having good health insurance.

I had an S9 autoset from Kaiser for my week-long titration study at home. If I recall correctly, the titration settings were wide open, min pressure=4, max pressure=20. After I turned the machine back in to Kaiser and the sleep doctor read my data card, he came up with a prescribed setting of min=6, max=10. The prescribed settings are based on where the machine needed to go during titration to control your apneas and hypopneas.

Even when you have a medically supervised titration study, you often end up needing to tweak your settings afterwards. Why? Because most people don't sleep "naturally" in a sleep lab, or even at home using a machine for the first week, often with a mask that may or may not fit well. A lot of people sleep poorly enough during titration that the machine doesn't have a chance to titrate for deep stage sleep, during which events often increase. And some people like me make adjustments because the max pressure causes a lot of painful air swallowing (aerophagia). In my case I slowly brought my max pressure down from the original setting of 10 to 8.2 which reduced aerophagia but still keeps my apneas under control effectively.

So if I were in your shoes I would open the settings up on my S9 Auto, and see what happens over the course of a week using your SleepyHead software. The experts here will likely tell you that for the most part your pressure will not go higher than it needs to in order to keep your airway open. So you might have it set at 20 for a while but it will not go that high unless it has to. After several days to a week you'll likely start to get an idea of what settings you need by reviewing your SleepyHead data, and/or with your very nice doctor and the good knowledgeable people on this forum helping you can probably arrive at a successful pressure setting.

I know others are solidly against treating yourself, but here you are doing the best you can without adequate health insurance. Kudos to your primary doctor for being willing to help as best she can. Does she have a colleague in neurology, pulmonology or sleep medicine that she could consult with after you have a week's worth of data, to recommend pressure settings for you? Even if they charge you for a brief consult, it might be fairly inexpensive? -- after all, you've already procured the machine and the S9 is a valid titration machine. With your data card from the machine, the doctor would have all s/he needs to recommend your pressures. If a consult isn't possible you can still do this and you'll have support here.

DME - Durable Medical Equipment

To get to all the goodies you need the 'open sesame' password:

http://www.apneaboard.com/adjust-cpap-p ... tup-manual

It's not the best laid out site but come back here and ask if you have questions. Good luck.

My husband and I have both used our Autosets to tweak our settings in order to get the best balance
of pressure range, event number and duration, and comfort.
Our plan was to be very conservative in making tiny changes, one at a time, and viewing several days'
results before embarking on any more adjustments. This seems to be a popular scheme.
Again, we are not medical professionals here--just fellow patients, sharing our experience and opinions.

MrPresident wrote:The Question:
What do you all think of someone skipping the apparently untrustworthy DME and just tweaking my CPAP machine until I get good AHI numbers and stop falling asleep at stoplights? Aside from finding a mask that I can tolerate this CPAP thing seems pretty easy to get the hang of. Am I missing something? Do I really need a DME so that I can post here about all the dumb things they are telling me?

Hi,

Have you had a sleep study? If not, then you really don't know what condition it is that you have, nor do you have much of clue what type of machine is needed or what type of treatment plan to follow. There are all kinds of disorders out there, some respond well to CPAP, others require some really tricky settings on the more advanced machines.

I cannot give you medical advice, but I can suggest what I might do if I woke up in your position. Try setting the machine wide open (pressure range of 4 to 20) and run for a few nights. Then download the data, and find the 90% or 95% pressure number (which ever number your machine will report). Then adjust the lower pressure number to be about 1 to 2 cm of pressure below that 90% or 95% number. Run for another week or so. Then look at the 90% or 95% number again, and tweak the lower pressure again as needed. Once you get the lower number, then you can consider reducing the upper pressure. You want that number to be at or just above the highest pressure that you normally see on a given night.

If this helps, then run with it until you can afford a sleep study. If it doesn't help, then you might have a more complex case that needs a sleep study and possibly a more advanced machine.

-john-

Hi,

Have you had a sleep study? If not, then you really don't know what condition it is that you have, nor do you have much of clue what type of machine is needed or what type of treatment plan to follow. There are all kinds of disorders out there, some respond well to CPAP, others require some really tricky settings on the more advanced machines.

I cannot give you medical advice, but I can suggest what I might do if I woke up in your position. Try setting the machine wide open (pressure range of 4 to 20) and run for a few nights. Then download the data, and find the 90% or 95% pressure number (which ever number your machine will report). Then adjust the lower pressure number to be about 1 to 2 cm of pressure below that 90% or 95% number. Run for another week or so. Then look at the 90% or 95% number again, and tweak the lower pressure again as needed. Once you get the lower number, then you can consider reducing the upper pressure. You want that number to be at or just above the highest pressure that you normally see on a given night.

If this helps, then run with it until you can afford a sleep study. If it doesn't help, then you might have a more complex case that needs a sleep study and possibly a more advanced machine.

-john-

John

Thanks so much for taking the time to offer your input. I have had a few people suggest running the S9 at 4 to 20 and review the results as a type of titration (spelling?) It is a great suggestion and apparently obvious to the veterans but I would not have thought of it on my own. Thanks.

I have had a sleep study, but it was not a full blown in the lab sleep study. I did an at home sleep study with a thing that went around my forehead with contacts on my forehead. It was cheaper and had some insurance coverage. I have not heard much mention of that type of study on this forum. I have the report from that study which has AHI, sleep level duration etc. I will do a formal study in December when I can change my insurance or in June depending on pre-existing requirements. At any rate as soon as I can. While I agree with your statement "you have much of clue what type of machine is needed or what type of treatment plan to follow" because of not having a formal sleep study, the study I did have showed 0 Centrals (which seems like a good sign) plus in the short time I have been floundering around on my own I have experienced pretty dramatic positive results. So I am at least doing some good.

Thanks again for your advice.

I should first just say that I am overwhelmed by the response from this forum to my question as well as the overall quality of all of the postings on this forum.

Thank you thank you thank you.

In addition the respect shown and the lack of ego, arguments and general one-up-manship that usually turns me off of joining forums is something that you all should be commended for.

Thanks you all for your help. You have no idea how helpful it has bee, God bless you all.

Sir NoddinOff wrote:To get to all the goodies you need the 'open sesame' password:

http://www.apneaboard.com/adjust-cpap-p ... tup-manual

It's not the best laid out site but come back here and ask if you have questions. Good luck.

Thanks Sir NoddinOff. I will check that out when I get my new S9. I was supposed to get it in the mail on Thursday. I ran my tracking number today and it said it would be delivered priority mail TODAY. Such anticipation all day! Alas when I checked the mail when I got home, instead of finding a key to the big USPS prize box I had a note saying it was at the leasing office of my apartment complex. Race to the office.....the last leasing agent was in her car....the alarm was already set....she was 15 minutes late picking up her daughter....Ahhhggggg!!!!

So it goes. Tomorrow.....

archangle wrote:If it's done right, it doesn't matter whether you, the DME, or the doctor manages it.

If it's done wrong, it doesn't matter whether you, the DME, or the doctor manages it.

It's not rocket science, but configuring and maintaining CPAP therapy isn't your typical "Joe Sixpack can't get it wrong" thing either. You do risk harm if you do it wrong.

I screwed mine up one time and got really sick before I figured out my CPAP wasn't working right.

Well said, and thanks for the response.

Question: When you "screwed mine up...", how did you screw it up and in what way did you get really sick? That might help me from screwing up too.

I agree with you that it is not "Joe Sixpack can't get it wrong". That is why I am taking baby steps and asking a lot of questions.

Thanks for your help.

kaiasgram wrote:Mr. President, I admire you doing the best you can to get CPAP going despite not having good health insurance......

Thanks. I appreciate that.

kaiasgram wrote:....Kudos to your primary doctor for being willing to help as best she can. Does she have a colleague in neurology, pulmonology or sleep medicine that she could consult with after you have a week's worth of data, to recommend pressure settings for you? Even if they charge you for a brief consult, it might be fairly inexpensive? -- after all, you've already procured the machine and the S9 is a valid titration machine. With your data card from the machine, the doctor would have all s/he needs to recommend your pressures. If a consult isn't possible you can still do this and you'll have support here.

Yes, she has a lot of resources and she has asked for the data from my first week of consistent sleep with the CPAP going. In fac that is how I learned that my S8 Escape "brick" does not report AHI because e that is what she asked for. Then I ordered the S9 Autoset.

I am willing to pay for a consult as you suggest, but I want to be informed as possible before I do that.

Thanks a thousand times for you input and help.

PS...My family physician is awesome. She takes as much time as she needs to explain to me whatever needs explaining. And get this....she will write notes for me to take with all of her recommendations....whatever that is. I have never had a doctor do that. Thanks Dr. Lembitz.

MrPresident wrote:The Question:
What do you all think of someone skipping the apparently untrustworthy DME and just tweaking my CPAP machine until I get good AHI numbers and stop falling asleep at stoplights? Aside from finding a mask that I can tolerate this CPAP thing seems pretty easy to get the hang of. Am I missing something? Do I really need a DME so that I can post here about all the dumb things they are telling me?

Although I don't have DME insurance, I do have enough money that I could have easily bought a machine from a DME if I had felt using one would have been a significant benefit. I decided not to do so, based partly on poor responses to e-mail attempts to get quotes on the APAP I intended to buy. Only one DME responded within a few days with a dollar quote, and that quote was totally out of range. For several hundred dollars I could take a few minutes to read the instructions and set up the equipment myself.

I did start out with the advantage of a sleep doctor's prescription giving an APAP range which has worked well for me so far.

So far, I am glad I bought my APAP over the Internet, rather than from a DME. I think a DME might be helpful if the user has difficulty setting up equipment, following written directions, and analyzing results.