would seem that sleep disorders are not understood very well

[space45]

looks like we have a long way to go to really understand sleep disorders. as you can tell I have found this to have become somewhat of a crusade based on a life time of sleep problems, some I still am trying to understand.

it is beginning to be my belief that we as a community, as in sleep disorder community, can not just sit by and let the government or big biz solve the problems. we are to small and over looked segment, yes there are some companies servicing our needs, but they seem to be to busy building their regulatory protection for their little empires to really look at what we need. our retention rate suck, why? uncomfortable conditions, and not getting enough results, or feeling worse for a multitude of reasons. for me waking up in the morning has become painful, my wife say I am like a statue now when I sleep, I am thinking not moving so much has made me more sore and stiff when waking up. it is not hard to understand why so many try and so many quit before finding something that works. I looked in the free classified adds online and was shocked to see how many PAP used machines were for sale, and the number of very new machines was even more shocking, that is a large number of drop outs, not getting what they need from the treatments they were given, or the machines. that is a large number of very sleepy people driving and going about their biz thinking they are OK when they are not getting a good sleep. not so OK I would guess.
if they got a real, and I mean REAL good sleep, would they EVER give it up? I would say not on there life would they ever stop whatever is giving them a good nights sleep. so something is very wrong, I for one would like to know what.

the point is who would not want a great nights sleep? are we getting a great nights sleep? some are, some are not, then ask why? with the rate we loose people I would say we are getting a failing grade in the goal of getting a good nights sleep and solving all the problems with sleeping well. government and companies have had long enough to locate the problems and find solution and they are not really doing much at all it would seem. my auto machine does some funny things at times, not sure why but it would seem not to be the right response, I could be wrong, but if I had a good sleep lab I could play and tweak things to possibly tune them in better. I could work on the open source PAP unit to refine and improve the program algorithm for responding to the needs and getting better results. I would like to have this be very open for the user to tweak so he can tune it to his own needs, the options for tweaking seem very limited with the units we have now. and that is to be expected, back to profit base and maxing said profits, and so back to can a pure profit company serve the needs of people with medical needs in the best way, they aim for sweet spots, for the better returns, not the best treatments. if they had a open system so we could really get in a tweak, their customer service would have to be huge, then they would have to charge the big bucks they do just to pay for their customer service support. there would be a non stop influx of questions. so they do not, and limits what can be done and so limit the amount of problems their machine can help with. so we are back to where we are now, can a pure profit based company really do the best job for a diverse group of people that have a devise and interconnected set of needs? how can their cookie cutter way of thinking ever come close to solving this problem. it would seem we need to find a way to tune things in for each person, and over time we MAY find patterns and MAYBE be able to have a more refined auto system to auto tune to the person. not sure but it sure would be great to try, I know I am going to pursue this, I WILL have my OWN sleep lab and it will be as tricked out as much as it can be, it will be overloaded with things for gathering data as I have no idea at this time what data will play a key role. will post info for others to build their own and join in the search and fight to stop sleep disorders and discomfort in its tracks. sound mighty high handed, but I know I do not sleep anywhere as good as I should, even with the machine.

back ground, from when I was young I would get headaches and fevers and feel like crawling under a rock and dieing, I would fall asleep for about 12 hours or so and wake up like I could conquer the world single handed with just my little finger and no effort as all. man I would feel so great I would be exploding with excitement and drive, that would dwindle over a week or so till I felt normal again, then back down to wanting to die and going to sleep.....and so on and so on. I was hospitalized several times to try and find out what it was, well as boring as a hospital is to a kid, I would sleep enough to keep it at bay, until I got out and it would start up again. that is how I knew I had a sleep problem from childhood. BTW not once did someone think of sleep disorder or send me to a sleep clinic or anything of the sort. EVEN when I said it was SLEEP related. what a wonderful world we live in.

is any of this sounding out of line?

open for input

[Julie]

Btw, are you aware that there's a company in Australia that makes and sells custom masks from molds? They charge a LOT! It would be great if you come up with some better way to make things work!

[Todzo]

Yes, sleep medicine is the sleepiest group - slow slow progress - seem almost unable to do the most basic research.

more later

looks like we have a long way to go to really understand sleep disorders. as you can tell I have found this to have become somewhat of a crusade based on a life time of sleep problems, some I still am trying to understand.

it is beginning to be my belief that we as a community, as in sleep disorder community, can not just sit by and let the government or big biz solve the problems. we are to small and over looked segment, yes there are some companies servicing our needs, but they seem to be to busy building their regulatory protection for their little empires to really look at what we need. our retention rate suck, why? uncomfortable conditions, and not getting enough results, or feeling worse for a multitude of reasons. for me waking up in the morning has become painful, my wife say I am like a statue now when I sleep, I am thinking not moving so much has made me more sore and stiff when waking up. it is not hard to understand why so many try and so many quit before finding something that works. I looked in the free classified adds online and was shocked to see how many PAP used machines were for sale, and the number of very new machines was even more shocking, that is a large number of drop outs, not getting what they need from the treatments they were given, or the machines. that is a large number of very sleepy people driving and going about their biz thinking they are OK when they are not getting a good sleep. not so OK I would guess.
if they got a real, and I mean REAL good sleep, would they EVER give it up? I would say not on there life would they ever stop whatever is giving them a good nights sleep. so something is very wrong, I for one would like to know what.

the point is who would not want a great nights sleep? are we getting a great nights sleep? some are, some are not, then ask why? with the rate we loose people I would say we are getting a failing grade in the goal of getting a good nights sleep and solving all the problems with sleeping well. government and companies have had long enough to locate the problems and find solution and they are not really doing much at all it would seem. my auto machine does some funny things at times, not sure why but it would seem not to be the right response, I could be wrong, but if I had a good sleep lab I could play and tweak things to possibly tune them in better. I could work on the open source PAP unit to refine and improve the program algorithm for responding to the needs and getting better results. I would like to have this be very open for the user to tweak so he can tune it to his own needs, the options for tweaking seem very limited with the units we have now. and that is to be expected, back to profit base and maxing said profits, and so back to can a pure profit company serve the needs of people with medical needs in the best way, they aim for sweet spots, for the better returns, not the best treatments. if they had a open system so we could really get in a tweak, their customer service would have to be huge, then they would have to charge the big bucks they do just to pay for their customer service support. there would be a non stop influx of questions. so they do not, and limits what can be done and so limit the amount of problems their machine can help with. so we are back to where we are now, can a pure profit based company really do the best job for a diverse group of people that have a devise and interconnected set of needs? how can their cookie cutter way of thinking ever come close to solving this problem. it would seem we need to find a way to tune things in for each person, and over time we MAY find patterns and MAYBE be able to have a more refined auto system to auto tune to the person. not sure but it sure would be great to try, I know I am going to pursue this, I WILL have my OWN sleep lab and it will be as tricked out as much as it can be, it will be overloaded with things for gathering data as I have no idea at this time what data will play a key role. will post info for others to build their own and join in the search and fight to stop sleep disorders and discomfort in its tracks. sound mighty high handed, but I know I do not sleep anywhere as good as I should, even with the machine.

back ground, from when I was young I would get headaches and fevers and feel like crawling under a rock and dieing, I would fall asleep for about 12 hours or so and wake up like I could conquer the world single handed with just my little finger and no effort as all. man I would feel so great I would be exploding with excitement and drive, that would dwindle over a week or so till I felt normal again, then back down to wanting to die and going to sleep.....and so on and so on. I was hospitalized several times to try and find out what it was, well as boring as a hospital is to a kid, I would sleep enough to keep it at bay, until I got out and it would start up again. that is how I knew I had a sleep problem from childhood. BTW not once did someone think of sleep disorder or send me to a sleep clinic or anything of the sort. EVEN when I said it was SLEEP related. what a wonderful world we live in.

is any of this sounding out of line?

open for input

[djhall]

I'm not going to spend a ton of time typing out a response, so I will just try to summarize very concisely. I think you have good intentions and generally good ideas, but I think you may be a bit too ambitious for what most people would need and use.

Spending time on here has made me realize how simplicity is the biggest missing ingredient. Most people have the same basic questions and issues. Do I have SA? How can I test myself at home? How do I download the data? What does my data mean? Are my settings optimal? Can I reduce my pressure? Can I stop using the machine? Etc. I don't know how many people would do custom built machines or masks, or have extra needs for sensing limb movements and such. However, addressing two basic issues in an extremely easy and simple ways might potentially help a LOT of people.

1) EASY & CHEAP (but as accurate as reasonably possible) way to do a home sleep test and see if someone has treatable issues. I've read the threads where people try to buy recording O2 meters and download the results and analyze them to determine if they desaturate at night.... they are far from putting on a sensor, going to sleep, and looking at a screen that tells you what issues you may have.

2) Getting actionable information from raw sleep data. Sleepyhead is fantastic. However, we get tons of questions about what all the data means and if the settings should be adjusted. I'd love to see something that analyzes it for recommendations... something simple like, "Your AHI has increased over the last month with additional Hypopnea and OA events. There is also a little snoring. Recommendation: Increase your pressure from 8.0 to 8.5 and let the software analyze the results for the next two weeks to see if your statistics improve as a result."

[space45]

some very good stuff,

I did say we need a open source home sleep apnea testing unit. that software idea is a great one as well, but would need disclaimers for the CYA thing we need to do now days. I hate how one has to be on the defensive all the time.

thanks for the input, your thinking in the same way I am, and yes I do want to do a sleep lab and I know very few will want to play that game with me, but I am doing it more for myself so it does not matter if I end up being the only one working on it, but do hope others will help and we can work to uncover some of the hidden working of this problem, not just some of the plain obvious facts.

one of the reasons I would like to do the sleep lab is to maybe incorporate the lab into a PAP machine that will record tons of data, and it is my hope that the client will then upload the data to a website at some sort of interval, or allow a wireless connection to auto upload it, no personal info or identifying data. just raw info so it can be looked at and evaluated to see if there is any patterns or anything that could help in improving treatment. it will also have the ability to have things added, so a 5 year old unit can have expansion units added to add more functionality and testing as the need arises

I did think the mask thing would be good, I have to make the high end 3D printer anyway so it was just one more use for it, will see, that project still may have wings, remember open source is world wide and there will be some place where masks could be build and sold on the cheap and the US guys can order it from, problem is in Canada, the US can reach up here and smack me same as if I lived in the US, as far as the law goes I may as well be down there as being up here offers little to no protection, some how a Canadian braking US laws is no different then someone in the US braking the same law, go figure.

will setup the 3d scanner and play with the idea anyway and see if I can at least make myself a good fitting mask.

will keep you guy posted on how things go

I'm not going to spend a ton of time typing out a response, so I will just try to summarize very concisely. I think you have good intentions and generally good ideas, but I think you may be a bit too ambitious for what most people would need and use.

Spending time on here has made me realize how simplicity is the biggest missing ingredient. Most people have the same basic questions and issues. Do I have SA? How can I test myself at home? How do I download the data? What does my data mean? Are my settings optimal? Can I reduce my pressure? Can I stop using the machine? Etc. I don't know how many people would do custom built machines or masks, or have extra needs for sensing limb movements and such. However, addressing two basic issues in an extremely easy and simple ways might potentially help a LOT of people.

1) EASY & CHEAP (but as accurate as reasonably possible) way to do a home sleep test and see if someone has treatable issues. I've read the threads where people try to buy recording O2 meters and download the results and analyze them to determine if they desaturate at night.... they are far from putting on a sensor, going to sleep, and looking at a screen that tells you what issues you may have.

2) Getting actionable information from raw sleep data. Sleepyhead is fantastic. However, we get tons of questions about what all the data means and if the settings should be adjusted. I'd love to see something that analyzes it for recommendations... something simple like, "Your AHI has increased over the last month with additional Hypopnea and OA events. There is also a little snoring. Recommendation: Increase your pressure from 8.0 to 8.5 and let the software analyze the results for the next two weeks to see if your statistics improve as a result."

[space45]

how about you tell me one that is not?
they all charge out the wazoo for their products, and I can see why, most companies go by what the market can bare, and when it is governments and insurance companies being forced to buy the products. the market can bare big prices. so protecting the industry by circling the wagons and getting the docs and medical industry to validate the need and the regulatory guys to make sure the market stays lean of competitors by keeping the small innovative guys froze out. you now have a gun to the head of groups with very deep pockets so you can go deep, as in insane with your pricing. they are forced into paying it.

I have no problems with some company wanting to charge 1 million dollars for a lollipop, as one can live with out one just fine and there are tons of other that charge under a buck for the same thing, then one is not FORCED to buy the 1 million dollar lollipop. now fix the price in a industry that one is forced to have to deal with, use regulations to keep other out and you have a questionable bordering on illegal endeavor. add to that their targets are extremely deep pocked groups that are forced to have to buy at just about any price and I would say that would define a pure profit company, no morals, no self control, no doing what is right.

what would you call doing biz in that way? I bet you would say that is good biz practice and capitalism at its best, am I wrong? you would really need to look up the real definition of capitalism if that is the case.
when there is no real competition then there is no real capitalism. last I heard price fixing was something illegal, wonder why?? how can anyone justify the price they charge for a over glorified blower/fan, I design stuff like this and know exactly whats involved in making this type of thing. so do not try to blow smoke at me.

pure profit based company

WTH????

Can you give an example of such a thing that is currently involved in sleep medicine or equipment?

[billbolton]

is any of this sounding out of line?

Its sounding like a huge amount of strongly held belief and a miniscule amount of actual knowledge

[Goofproof]

is any of this sounding out of line?

Its sounding like a huge amount of strongly held belief and a miniscule amount of actual knowledge

True, in the U.S. and the world, if you made a $1 lollypop and a 1 millon dollar lollypop, the 1 million dollar lollypop would still have a market because the people would expect and get the INS and Government to pay for it anyway. It wouldn't matter if the more costly lollypop didn't meet the needs of the user, the cost would drive a demand without reason.

If we deal with making and paying for our own goods, supply and demand, set the prices. When other groups <ins and the government step into the mix> even that logic is thrown out. Jim

[robysue]

how can anyone justify the price they charge for a over glorified blower/fan, I design stuff like this and know exactly whats involved in making this type of thing. so do not try to blow smoke at me.

In order to sell CPAP machines as medical devices designed to treat a medical condition, the companies that make our machines must go through a very long and involved governmental regulation process that costs a tremendous amount of money. Without FDA approval, the devices cannot be sold as medical equipment and insurance companies would refuse to pay for them and doctors would be reluctant to prescribe them.

In other words, even if I accept at face value that you know exactly what is involved in making a CPAP machine, I don't think you have a realistic idea of what is legally required of the designer and maker of medical equipment in order for that equipment to be legally used as a medical device for treating an actual medical condition.

I understand your overall frustrations and I understand you think you've got a viable idea. But without FDA approval, any "open source" machine is not going to be perceived as a real medical device that is known to effectively do what it claims to do.

[space45]

I am open to enlightenment.

I know exactly what it takes to make a unit and what it's real value is, what is your actual knowledge about this subject?

is any of this sounding out of line?

Its sounding like a huge amount of strongly held belief and a miniscule amount of actual knowledge

[space45]

very true, if every one was paying for their own unit you can bet the price would be a fraction of what they charge now. all the red tape would have never been put in place. very few if any one would pay the extortion price and the price would have to come down to have any chance at all of selling them

is any of this sounding out of line?

Its sounding like a huge amount of strongly held belief and a miniscule amount of actual knowledge

True, in the U.S. and the world, if you made a $1 lollypop and a 1 millon dollar lollypop, the 1 million dollar lollypop would still have a market because the people would expect and get the INS and Government to pay for it anyway. It wouldn't matter if the more costly lollypop didn't meet the needs of the user, the cost would drive a demand without reason.

If we deal with making and paying for our own goods, supply and demand, set the prices. When other groups <ins and the government step into the mix> even that logic is thrown out. Jim

[space45]

love just how well you have made my point for me, wow look at all the red tape and hoops and regulations and certifications and classifications and fees and and and, wow that is a very large and insurmountable pile of red tape, and big companies love it, they can not get enough of it, the bigger the company and the bigger the bucks involved the more they need the red tape to survive, they even lobby for it, they could never compete on a level playing field with a small and aggressive and driven competitor, nor could they survive with out the warm and glorious warmth of all the red tape they wrap themselves in. how else can they get guys to stand up and state like this poor sole that someone like I does not understand all the hardships of the companies involved in this type and kind of industry have to endure and their need to have high prices as they have high expenses and fees and whatever to pay just to play the game. some see that as hardship for the company, some see that as protection from competitors and a big excuse to have to charge huge prices to very deep pocketed groups. can anyone else see this connection?

you have made my point better then I ever could have. ever think why we need all the levels of red tape that exists? what possible good can that extremely large pile of over bearing top heavy completely useless regulatory monstrosity ever hope to archive for the end user? answer, nothing really, unless of course the government or some other deep pocketed group is paying for most, if not all the bill for the end user. well then they get it for free, or through the wonderful idea of co pays and deductible they get the honor of paying what it is really worth and thinking they are getting one heck of a deal as they did not pay full price. how absolutely wonderful, if your some large corporation that makes and sells the units. can some smaller guy get into this wonderful and fun game and share in the insane profits. sure if they can afford the admittance fee, but then they would not be some lean mean driven machine now would they, they would be some over bloated monstrosity of a company that could not be bother swimming in that pond, they have their own pond to swim in, how do you think they became the big over bloated monstrosity in the first place. proof positive large corps need red tape to exist.

end of economic lecture, class dismissed

how can anyone justify the price they charge for a over glorified blower/fan, I design stuff like this and know exactly whats involved in making this type of thing. so do not try to blow smoke at me.

In order to sell CPAP machines as medical devices designed to treat a medical condition, the companies that make our machines must go through a very long and involved governmental regulation process that costs a tremendous amount of money. Without FDA approval, the devices cannot be sold as medical equipment and insurance companies would refuse to pay for them and doctors would be reluctant to prescribe them.

In other words, even if I accept at face value that you know exactly what is involved in making a CPAP machine, I don't think you have a realistic idea of what is legally required of the designer and maker of medical equipment in order for that equipment to be legally used as a medical device for treating an actual medical condition.

I understand your overall frustrations and I understand you think you've got a viable idea. But without FDA approval, any "open source" machine is not going to be perceived as a real medical device that is known to effectively do what it claims to do.

[space45]

guess my reply was to long, here is the next installment

BTW, I have NO intention of playing in this game, even if it was fair and not rigged, there is no way I would want anything to do with this industry as far as producing and selling machines or any other things for that matter to do with this industry. I am not sad or mad or any other thing that I can not be selling my PAP machine. for starter, it is not my machine, even if I did every thing to do with making it happen it is still not mine. open source is just that, it belongs to all of us, every one, even the ones that have no clue it even exists. the other point THEY ARE NOT FOR SALE. I could never envision myself as a PAP maker, that is not me, not where I want to be. so you ask why do all this complaining about something you do not care about? thing is I care, just because I am not wanting to make large amounts of money from it and be neck deep in it, does not mean I do not care. this whole thing is a rip off, no matter what the reasons, your over paying for something, that by definition is a ripoff, the fact you need it to survive and live well makes it criminal. no matter what the reason. if there was a even close to reasonably priced unit and they worked hard to make it better and was doing active research and involved in the forums find out what we need and how best to make it right, find out new things to look onto and problems to solve. I would not have said a word about any of this, no open source BS or nothing. I would use my now wonderful inexpensive and comfortable machine to get a better treatment and would have been on my way. but, from the very first time I head what they were charging for a over price blow drier I was fuming, now I bought a blower, think I was mad then, what about now I have paid the over the top price, and I got one heck of a deal, you see how that works, only reason I paid the price was my waking up not able to breath for awhile, thought I was dead, really, cashing in right there and then, wife was watching me die, if that did not happen I would not be here now.

some think it needs to be certified and what ever, it would be if your doing a insurance claim, and I know it will never be recognized by any doc, but that is not the goal or point of any of these open source projects I have mentioned. they are solely for education and for anyone to make one if they so choose, they can even use it AT THEIR OWN RISK, if they so choose. no profit on the unit its self, no selling of a unit, no claiming a unit, no doc prescribing one of the units. so why do it, my hope is it becomes the end all and be all of PAPS, every one in the know will want to make one for themselves, why you ask, because they are that good, how can that be you ask? I and others can change mode rework redo redesign, have 100 designs all at the same time and all with out one second of applying, waiting, explaining and feeing to have the OK by someone to say we can do what we do, we just do it, try it, what works move to the next gen, what does not work does not move on, the big corps protection will be their undoing. well sort of, they will not hurt from it. just their units will be what we call bricks now days. old slow and no one really wants them, but they are free...lol. that maybe a far off pipe dream that never happens, but it could if it take off.

I do not want or need the open source units recognizes by any authority, they are for personal use only, made by the user for the user. no permission or certificates or any red tape BS that makes the others cost a ton. not needed or wanted. one other thing, IT is not being sold, parts are being bought, or sold depending on the point of reference you use, supplies are as well, all can be bought from others, not just me. my thing is robotics and CNC and automation, that is MY thing, nothing wrong with the PAP thing. if I do anything, it will only be certain parts for the long haul, things close to what I make anyway, and for the short haul to get thing rolling I MAY do some master mold work and custom masks, more so for myself and to work out the bugs, and maybe for some locals. will post info in some appropriate place and you guys can do something with it or not, no matter to me. would hope someone uses my work to help the PAP community, looks like it will have to be a third world place or some place where they are not so nuts over regulations, you guys can then buy from them if you want. if someone wants to do this I will help them set up to do custom masks and master molds. after awhile I would hope the ones I help and train will take over helping and training others, I got things to do places to be.

[zoocrewphoto]

guess my reply was to long, here is the next installment


I do not want or need the open source units recognizes by any authority, they are for personal use only, made by the user for the user. no permission or certificates or any red tape BS that makes the others cost a ton. not needed or wanted. one other thing, IT is not being sold, parts are being bought, or sold depending on the point of reference you use, supplies are as well, all can be bought from others, not just me. my thing is robotics and CNC and automation, that is MY thing, nothing wrong with the PAP thing. if I do anything, it will only be certain parts for the long haul, things close to what I make anyway, and for the short haul to get thing rolling I MAY do some master mold work and custom masks, more so for myself and to work out the bugs, and maybe for some locals. will post info in some appropriate place and you guys can do something with it or not, no matter to me. would hope someone uses my work to help the PAP community, looks like it will have to be a third world place or some place where they are not so nuts over regulations, you guys can then buy from them if you want. if someone wants to do this I will help them set up to do custom masks and master molds. after awhile I would hope the ones I help and train will take over helping and training others, I got things to do places to be.

So, will the machine make any claims of treating sleep apnea? Will it provide data? Who is going to design this machine copying a current company's machine or software? Is each individual person supposed to create their own software, or will they be buying it?

It seems to me that the person still has to buy a kit, buy the software, do all the work, and if they get hurt, somebody is going to want their money back or more.

And masks - somebody has to design a bunch of masks before molds can be made and sold. How is this different from me buying a mask from a company, other than I have to do the work myself? I would still need to buy a mold to make the frame, more molds to make the removable parts, another mold to make a delicate cushion, and then I have to make headgear too. And what if that mask style doesn't work me? How many masks are you planning to make for this idea, and who will be designing them?

There is a lot more to making cpap machines and masks than simple manufacturing. Your ideas sound like wishful thinking, but it really requires the resources of a company or rich person to do all the work to make it happen. And prices for custom items are going to cost more than bulk made similar items.

[Sheriff Buford]

Newbies... gotta love em'....

Sheriff