would seem that sleep disorders are not understood very well

What would really be helpful is a large scale open source polysomnogram project. Then we could obtain the night to night, week to week, month to month, season to season, year to year daily polysomnogram data on many people which really could provide a beginning of an understanding of how we actually sleep in our own beds in our own homes night to night.

As it is now, we simply do not know.

Maybe we should plug in celebrities and political figures for some insight as to why they do/say the things they do.

robysue wrote: space45 wrote:
I hear the ones that say the laws protect us and are there to keep us safe, well safe is somewhat relative. also there is feeling safe and then really being safe. most feel safest in gun free zones where no one has a gun and every one is equal. this would be fine if there was no such thing as guns and knifes and clubs and what ever other weapon that could be use to give one a advantage over another. now I on the other hand feel way more safe at guns shows or gun range. some will think me nuts, some have it in mind as a firm fact, more so now, but think about it. how many guns shows were attack by a crazy gun man? non. how many gun ranges were targets of mad gun men. non. how many gun free zones have been attack, allot, in fact most every crazy gun man finds himself a gun free zone to carry out his attack. being unarmed at a gun show is way more safer and I feel safer when I am at one, even with the wall to wall guns and guys carrying guns are everywhere. how long would a gun crazed wacko last at a guns show, not long at all, that is why the wackos never show up to one. some would say anyone going to a guns show is a gun crazed wacko.

The analogy you are trying to draw between guns and medical devices is flawed to the point of not being relevant.

all I was saying is all of the government and regulatory organizations that are there to make you safe, do not always deliver on what they are selling you on, their main goal is to make you feel safe while possibly honestly trying to make you safe if they are lead by someone that is really working towards that end, would seem that most of them are there doing thing to justify them being in existence while making boatloads of money and building the numbers/size of the organization so they grow in power and influence. one man organization is laughable at the very thought, but 1 million man organization is a steam roller, close to unstoppable, that is one reason big government is a bad thing, they can get to big for any citizens good. case in point on my analogy, how many drugs and medical devices made it through the big and very expensive regulatory system only to find it was killing and hurting large numbers of people? if you believe the TV, a large number of them with all the lawyer adds looking for victims of some drug. what about the bug pills that are being sold to relieve your depression or anxiety or stress and yet are being blamed for guys going buggy and doing real stupid thing and hurting others? they all went through the testing and approval system yet did not deliverer what they were selling. or did but at the cost of ones sanity. I should have used some other thing other then guns as when some hear guns their mind shut down and they are in a whole new head space. I hope this cleared up the original point that was missed.

robysue wrote:You can do whatever you want to your own body. Nobody questions that.

But you will get mighty few volunteers to use your homemade system either their primary or secondary PAP device simply because you will not be able to provide the necessary scientific evidence that your device works as advertised.

that was my point, it matters not who else does any of this it is my body and I am doing what I think is best for it while trying to understand the whole sleep apnea thing, and I am not advertising or claiming anything other then I did this and got this results. others can do what they will with the info.

robysue wrote:I can't help but think that you are wildly underestimating the sophisticated programming that does go into the high end devices.

Unlike a hair dryer, your CPAP/VPAP has to do all the following:

Track each and every inhalation and exhalation and adjust the pressure accordingly.
Accurately work with very low amounts of added pressure in a semi-closed pressurized system: 1cmH20 is a tiny amount of added pressure, and the machine must be able to accurately measure added pressure in the range of 0.1 cm H2O (for your Resmed S9 VPAP) to 0.5 cm H20 (for my PR System One BiPAP)
Analyze the wave flow data in real time. The Auto machines use about a 2-5 minute moving average window for calculating when the airflow decreases enough to flag (and respond) to a hypopnea. The real time wave flow analysis is also critically important in determining flow limitations, which are used as markers to increase the pressure in the Auto algorthims
Have a way to distinguish between CAs and OAs; both the Resmed FOT and the PR FF methods are proprietary and hence protected by patents. You'll need another way of doing that AND you will have to prove that your method is scientifically valid---that the number of apneas misclassified is low enough to not be too important.
Provide a way to add additional humidification for those who need it; preferably the tank should be easy to refill, easy to clean, and at least somewhat resistant to spilling when the machine is accidentally pulled (part way) off the table.
Be QUIET. The average hair dryer puts out about 60 decibels of noise; the S9 is rated at 24 decibels. Noise reduction is a big part of what PAP manufacturers have worked on through the years.
Gracefully compensate for a certain amount of unintentional leaking. Even the best of us have some leaks now and then; the current machines gracefully compensate for this by increasing the air through the system to maintain the desired pressure. Machines from different manufacturers have differing amounts of excess leakage that they can compensate for, but typically machines can handle anywhere from 24 L/min of excess leaks (Remed) to possibly as much as 50 L/min (PR if the data from my PR System One is anywhere close to accurate)
Weigh less than 3 pounds (1.25 Kilo) for the blower unit and less than 5 pounds (2 K) for both the blower and the humidifier
Be small enough to not take up too much room on the bedside table

on this point I disagree, one guy was talking about how back in the day he was sold and used a CPAP that was a blower with a screw adjustment for pressure, no electronics at all so he was adjusting a spring that would dump excess air to maintain a given pressure. can not wait to try that one out, pure simple elegance at its best. I have programmed lots of cool toys including some very high end medical devices (under contract for a company) and this does not seem to be that tough a nut to crack. time will tell who is right.

robysue wrote:Unfortunately reps of Resmed and PR don't seem to frequent this forum. Occasionally you do see a Devilbass rep (if I recall the company correctly).

From the experiences that those of us who have tried to call Resmed or PR for any of a variety of reasons have had, it seems quite clear, however, that neither Resmed nor PR regards us, the users of their equipment, as their customers. Rather they regard the DMEs that sell us the equipment as their customers. And that is a problem that we'd love to see changed. So if you have any creative ideas in how to get them to change their attitude about who their customers really are, let's hear them.

I have been trying to say how, you may not have been hearing them, the system that is set up with all the layers of laws and regulatory bureaucracy has cut you ( the end user) out of the loop, the one thing that matters most, the end user, is no longer important, why you may ask, simple, your not paying the bill, others are and the one paying the bills are being force to pay and we the end use are being forced to buy what they offer. we the people are no longer are in this loop, we are cut out and will be till things change, the only way to change that is give a option for other to get something better, the system will not allow that directly but will indirectly. so we have a choice, go with the flow or fight it.

robysue wrote:And for the user interface (the mask), you have to insure:

The intentional leak rate even at 4cmH20 is sufficient to minimize the chances of rebreathing CO2
The mask materials are durable enough to last, but soft enough for most people to tolerate on their face
Be easy enough to take on and off in the middle of the night

non of that is a problem

robysue wrote:If you think you can design a better headgear that would be compatible with multiple brands of masks, you probably COULD sell/distribute that (or its plans) without any legal problems---the headgear often can be bought without a prescription and it could carry a disclaimer that it is merely a comfort item and is not intended to actually treat OSA.

I would be extremely shocked if I could not making a more comfortable head strap system. my straps are all stretched out there is no stretch left. I have talked to guys that say they tie knots in the straps to get them back short enough for the Velcro to have something to stick to as the straps have stretched to be to long to have any place left for them to stick to. there has got to be a better way.

chunkyfrog wrote:Space45: You are different, but in a good way.
This forum has its share of geeks and obsessives--I think you will fit right in.

thanks for that kind comment

musculus wrote:sleep problem besides, your description sounds awefully like biopolar disorder/manic depression.

I am not real sure on the whole bipolar thing, yes I would get over the top exited and burn energy let there was no tomorrow, but I never really did the whole depression thing. my body sure would, but I did not feel depressed, more like having a cold, not fun and your not happy but (at least I am) not depressed. I have often wondered if I did have some form of it, but most defiantly not a full blown version that most think of.

robysue wrote:Your politics or behavior is not the problem.

It's just that what you're talking about is not as simple as you want it to be. The government regulations are there to protect people from being harmed by badly designed medical equipment. And to provide legal responsibility when someone is harmed by badly designed equipment that manages to get through the far from perfect regulatory system.

thanks for that. I can most defiantly see your point, there have been a ton of snake oil sales men for sure. I am just not as sold as you on the solution the government is selling us on. they are trying and have very good intentions, but some times things do not turn out as planned, and more so when the government is involved. the new medical web site in the US is only one small example. the roll out was not so good.

Todzo wrote:What would really be helpful is a large scale open source polysomnogram project. Then we could obtain the night to night, week to week, month to month, season to season, year to year daily polysomnogram data on many people which really could provide a beginning of an understanding of how we actually sleep in our own beds in our own homes night to night.

As it is now, we simply do not know.

I very much agree, as someone that has had a very large range of quality of sleep, a good sleep is priceless. problem is we have no idea how others sleep and what sleep really is. we know the base concept, lay down and close eyes and magic happens and we open eyes hours later and feel better most times. but some are tiered real soon afterwards and some make the energizer bunny look lazy all day every day just flat out go. so who is getting the better sleep? is sleep the only factor? of course not the only, but I do think it is a very big part. so why and how? how do some sleep great and other do not? being able to breath when sleeping is most definitely a plus and very important, but what else, shutting down mind, that is bordering on imposable for me, but I have been trying, and it would seem to be a good thing for a good nights sleep. so what else? I will be doing research on this for sure.

the base idea of a data base for sleep would be a very good idea in my view, one thing I do know is that, "we do not know all of what it is that we do not know" we are aware of not knowing some things, but there are other things we have no idea about till something or someone opens up that part of knowing and we then become aware we had no idea about something till just them. how much about sleep do we have no idea of?
that would be a cool thing to explore.