Tell him, Lori!
Men always think that women can't keep their mouths shut.
It would be nice to think that the doctors and technicians have been through all those years of school and training and would be able to diagnose accurately and that lay persons using software and data at home would not be able to interpret OSA correctly. But it sounds like that just ain't so.
It is a shame that some folks have to suffer with hit and miss therapy.
Barb, I haven't tried a full face mask but it would seem that if you have to tighten it to the point that it hurts there must be something very wrong. Hang in there and keep trying!!
The definition of insanity...doing the same thing over...
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Sleepless on LI wrote:WAFlowers wrote:Can you imagine the cost of a full week of sleep lab studies? And who here is crazy enough to put up with that anyway?
However, a week at home with a well-fitted mask and an auto PAP then interpret the results ... now that sounds like a much more successful way to approach this!
Bill, that is the point. I agree that a week of in-home "testing" with software is the way a sleep study should be done. Perhaps instead of these ridiculous one-night stands at a sleep lab, they should think along those lines. It makes much more sense in my mind to gather data from your normal pattern of sleep, in your own surroundings and for more than one isolated night. I think if they could come up with the type of machine/software that they could give you for a week to diagnose you in that method, people would do a hell of a lot better than how they do it now.
I've been busy, and I was just taking a 5 minute break, but after reading this I feel an uncontrollable urge to put in my $0.02 (US).
Considering the technology available, and the fact that from what I can tell most of the differences between the CPAP and APAP are virtually only software and maybe slightly more sensitive sensors. I think it is completely unconscionable that all machines do not have event recording capabilities.
I completely understand the economic realities at play, and it sucks. What ever happened to a bit of altruism in this world.
Oh well.
cheers,
Tom
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Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
Tom,
I cannot, for the life of me, understand why software is not incorporated into every machine and why the economics of it all is what seems to outweigh the benefits to the patients, who were supposed to be the purpose behind the invention of these products to begin with. I know it would totally eliminate sleep studies if everyone could, once diagnosed, monitor and control their own conditions, but wouldn't that be a beautiful thing? I guess as long as people would lose economically by the patient actually having such abilities, there will never be an all-out advancement in this field, as I'm sure is the same with many others. Sad but true.
I once wrote that patients should be given only machines with software and then it should be mandatory for them to take a class in order to learn how to use it, interpret it and adjust it accordingly. Only then would we really have the need to go back for follow-ups IF we needed them and could really control our conditions so much better. Most of us have found a way around being treated like we're two-year-olds that can't handle that responsibility. But for the others? What can anyone say. In this country, it is still the almighty dollar that sets the standards, whether or not everyone's health or their control over it gets compromised in the balance.
I cannot, for the life of me, understand why software is not incorporated into every machine and why the economics of it all is what seems to outweigh the benefits to the patients, who were supposed to be the purpose behind the invention of these products to begin with. I know it would totally eliminate sleep studies if everyone could, once diagnosed, monitor and control their own conditions, but wouldn't that be a beautiful thing? I guess as long as people would lose economically by the patient actually having such abilities, there will never be an all-out advancement in this field, as I'm sure is the same with many others. Sad but true.
I once wrote that patients should be given only machines with software and then it should be mandatory for them to take a class in order to learn how to use it, interpret it and adjust it accordingly. Only then would we really have the need to go back for follow-ups IF we needed them and could really control our conditions so much better. Most of us have found a way around being treated like we're two-year-olds that can't handle that responsibility. But for the others? What can anyone say. In this country, it is still the almighty dollar that sets the standards, whether or not everyone's health or their control over it gets compromised in the balance.
L o R i
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Barb (Seattle)
- Posts: 663
- Joined: Wed Aug 03, 2005 6:41 pm
[quote="Anonymous"]Hi Barb,
Your machine is an Auto, isn't it? Just wondering if you ever use it in Auto mode or just straight pressure? If you do use auto sometimes, what are the numbers like then, and do you notice any better results with the masks? Seems like at least part of the night the pressure would be lower and masks less leaky allowing for some sleep.
8 years is a loooong time. Hope it smooths out really soon!
Esther
Your machine is an Auto, isn't it? Just wondering if you ever use it in Auto mode or just straight pressure? If you do use auto sometimes, what are the numbers like then, and do you notice any better results with the masks? Seems like at least part of the night the pressure would be lower and masks less leaky allowing for some sleep.
8 years is a loooong time. Hope it smooths out really soon!
Esther
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Barb (Seattle)
- Posts: 663
- Joined: Wed Aug 03, 2005 6:41 pm
[quote="Sleepless on LI"]Barb,
My reaction to what you wrote is, you need to use 8, not 12. If the reason they do a titration study is to find out what pressure is needed to help or eliminate your events, and 8 was the number they said was necessary for you, putting you on 12 makes no sense to me. And I agree that a nasal pillow interface can help with congestion. When I had my awful cold a few weeks ago, it actually did help me breathe. So this doctor, in my opinion, needs to stick to your titrated pressure of 8 and give you the nasal pillow interface to try. Why bother having a study if you don't follow what it says and throw the data out the window? And what harm could it do if you tried the nasal pillows? If you don't like it, you're no worse off than having masks you cannot use or that don't help you, like the state you're in now.
I think WillSucceed says it best. I'm paraphrasing, but he says that if your study is done correctly when they titrate you, straight CPAP at that number is how you will achieve your best results. With that in mind, I would stick to straight CPAP at 8 cms. and get yourself a np interface. If they won't get it for you through insurance, buy it yourself. There is nothing stopping you from doing that. They are not THAT expensive and if it helps you finally, it will be worth every little penny you spent on it.
Eight years of no help tells me either that this doctor is not doing right by you and doesn't know how to address your issues or your sleep study/titration part may need to be repeated to see what is going on. It always amazes me how they can take one night out of your life, put you in conditions that you've never slept in before, with all different stressors, etc., and then titrate you based on that isolated set of conditions. Everyone on this site knows that if you change your settings, you can't only give it one night. You have to see at least a week's worth of data to know if it's working because things change nightly. So to do one night of a titration study in a strange place that you're not used to sleeping in which causes emotional stress, etc., it doesn't make sense to me. I think they should do these studies in your home, where conditions are as normal as they can be, honestly simulating your nightly sleeping pattern. Totally doesn't make any type of logical sense to me.
My reaction to what you wrote is, you need to use 8, not 12. If the reason they do a titration study is to find out what pressure is needed to help or eliminate your events, and 8 was the number they said was necessary for you, putting you on 12 makes no sense to me. And I agree that a nasal pillow interface can help with congestion. When I had my awful cold a few weeks ago, it actually did help me breathe. So this doctor, in my opinion, needs to stick to your titrated pressure of 8 and give you the nasal pillow interface to try. Why bother having a study if you don't follow what it says and throw the data out the window? And what harm could it do if you tried the nasal pillows? If you don't like it, you're no worse off than having masks you cannot use or that don't help you, like the state you're in now.
I think WillSucceed says it best. I'm paraphrasing, but he says that if your study is done correctly when they titrate you, straight CPAP at that number is how you will achieve your best results. With that in mind, I would stick to straight CPAP at 8 cms. and get yourself a np interface. If they won't get it for you through insurance, buy it yourself. There is nothing stopping you from doing that. They are not THAT expensive and if it helps you finally, it will be worth every little penny you spent on it.
Eight years of no help tells me either that this doctor is not doing right by you and doesn't know how to address your issues or your sleep study/titration part may need to be repeated to see what is going on. It always amazes me how they can take one night out of your life, put you in conditions that you've never slept in before, with all different stressors, etc., and then titrate you based on that isolated set of conditions. Everyone on this site knows that if you change your settings, you can't only give it one night. You have to see at least a week's worth of data to know if it's working because things change nightly. So to do one night of a titration study in a strange place that you're not used to sleeping in which causes emotional stress, etc., it doesn't make sense to me. I think they should do these studies in your home, where conditions are as normal as they can be, honestly simulating your nightly sleeping pattern. Totally doesn't make any type of logical sense to me.