"please keep me updated about oximeters "
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Self Titration
There is an interesting thread on www.apneaboard.com about self titration with scientific correlation if any one is interested. The thread is on the Main Forum and titled "Self Titration".
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Replies to This Discussion
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Permalink Reply by Somnonaut on
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Rock,
Thanks for the kudos but I do not think I made the field up or anything.
My query was why support THE OTHER site that the OP linked to that had the manuals readily available to afford anyone to adjust their Timin or any of the other settings, pressure just being one of them. Why support them, why allow the link to remain here even? Basically, leaving the link up, it supports that site.
FACE PALM
I do remember you asking people at Binary to come. I am only here to help the masses, not the deluded who think they can do OK with no medical guidance, all because some neirdowell at a DME (Yes it is the DME who is responsible for obtaining the compliance measures and forwarding them back to the doc) did bad.
Terrible "help" for others if that is the overriding source of one's enmity.
Rock said:LMAO! I have alot of respect for Somno. Out of all of the techs that I have not meant he is 1 of my favorites. The work he has done for sleep has been truly inspirational. Most of you who do get sleep because of your treatment have his pioneering of the industry to thank.
With that said I have some questions for you Mr Sleep Geek:
What would you consider objective data. My assumations from reading many of your opinions is that the only data you consider objective is that from a PSG. Am I correct? What about efficacy data from the machine. Doesn't the DME and doc use this same data to make small changes in a persons treatment?
I in no way support self titration. The only thing I have supported in changing is the requirement of a prescription for a mask. That is a little ridiculous. Somno something has to change. We are losing 50% of the people we help. yes many of these people we had no chance with. We have lost many more to lack of knowledge and education. Simply not enough hand holding. That fault lies with us as 70-80%(educated guess) of all sleep knowledge sits in a lab from 7pm to 7am closely guarded like a top secret document. Personally no matter the situation if I can't find help then I must help myself. I believe that this is the situation in which many of the members here have found themselves.
You asked earlier why I contribute to a site that supports these issues? Because I have seen the industry that both you and I work in fail many. I have personally seen the wrongs of profiteering involved in sleep. I do not have to agree with Mike, Jnk, and certainly not Rooster to know that this is a much needed site for many. This site picks up where many of our peers fail. I do not have to support self titration or the dregulation of sleep to support that.
Also things are not as good in England as you think. An oximeter test followed by straight PAP at non-objective 10cm, or Auto-PAP at 4-20 with follow up after 1 year is not good for anyone.
Welcome to sleep guide Claude. In case you have forgot I invited you over a year ago.
Rock
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"Diabetes is regulated by diet,blood sugar and insulin application. Sleep apnea is regulated by AHI, AI, Leakage and pressures."
This is TRULY going to be an uphill battle. You have no idea what you are talking about. AHI is a measure, not something that regulates OSA. OH THE HORROR.
Chris H said:Hello Somnonaut, Diabetes is regulated by diet,blood sugar and insulin application. Sleep apnea is regulated by AHI, AI, Leakage and pressures. You obviously understand this being a pro. I would never willi nilli or hocus pocus my treatment. The people at my DME that I initially dealt with failed at data down loading .They sent my Doctor a blank report! He did not even notice it was blank.I had asked for a duplicate and when I got it even I could see it had no data.It was at an A.W.A.K.E meeting that I found out that my machine was not properly calibrated to my Rx.That is when I took interest in my numbers.I now have a "sleep doctor" Being aware and awake are my goals.If my numbers stink I do not want to wate 6 months for a down load to be done.Real time reaction is not a bad thing. If I find it is not an equiptment failure than you can bet my Sleep Doctor is getting a call. So No I do not want to mess with my numbers I just want to be aware.Good Sleep,Chris
Somnonaut said:Sleep is not an organ. It is not the same as diabetes. You can all sit here and think you are thinking these "novel" thoughts, but the field has wrestled with this issue for decades. You are not coming up with anything new. As for the insurers, they will always win, because they are insurance companies. If we had non-litigation medicine, then maybe easier ways could be found such as in England, but they have Socialised medicine. And who here wants that right? Right?
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Permalink Reply by RockRpsgt on
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Did you just face palm me somno?! LOL
I am glad you are here. I was just giving you some crapola.
How about that efficacy question? Have you ever changed your settings? If so what "objective" data did you use? How is EPR/Flex technology a comfort setting if it completely changes the parameters of the treatment? Wouldn't adding this feature to your therapy be changing your prescription and determine a person "untreated" as you stated above. In truth it lowers your average pressure by up to 3cm in some cases(cflex+).
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I am not sure I am allowed to discuss this anymore as Mary told me to shut up basically.
But anyway,
Face Palm was not for you Rock.
Cflex and EPR do not change the pressure within the airway EXCEPT for a very small time at the beginning of exhalation (approx 100msec,) then the pressure goes to the set pressure, BECAUSE...supposedly it is the pressure at the END of the expiration cylce that controls IF the airway will collapse.
SO.....these two technologies, though working slightly different in scale, do the same thing and that is, to drop the pressure quickly to give the user the perception of breathing out against a lower breath. It is that fraction of a second that makes the user THINK they are using less effort to breath. In reality it is inconsequential in terms of the true total expiratory work of breathing, if one was to measure it.
Ar you just pulling my chain here with this question? You wisenheimer... I oughta.
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Like that has ever stopped you.
Somnonaut said:I am not sure I am allowed to discuss this anymore as Mary told me to shut up basically.
But anyway,
Face Palm was not for you Rock.
Cflex and EPR do not change the pressure within the airway EXCEPT for a very small time at the beginning of exhalation (approx 100msec,) then the pressure goes to the set pressure, BECAUSE...supposedly it is the pressure at the END of the expiration cylce that controls IF the airway will collapse.
SO.....these two technologies, though working slightly different in scale, do the same thing and that is, to drop the pressure quickly to give the user the perception of breathing out against a lower breath. It is that fraction of a second that makes the user THINK they are using less effort to breath. In reality it is inconsequential in terms of the true total expiratory work of breathing, if one was to measure it.
Ar you just pulling my chain here with this question? You wisenheimer... I oughta.
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Permalink Reply by Chris H on
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Ok so I used the word regulated instead of measured ....We are looking at and responding to the numbers in both is what I was attempting to say........So dont get a kink in your hose.
Somnonaut said:
"Diabetes is regulated by diet,blood sugar and insulin application. Sleep apnea is regulated by AHI, AI, Leakage and pressures."
This is TRULY going to be an uphill battle. You have no idea what you are talking about. AHI is a measure, not something that regulates OSA. OH THE HORROR.
Chris H said:Hello Somnonaut, Diabetes is regulated by diet,blood sugar and insulin application. Sleep apnea is regulated by AHI, AI, Leakage and pressures. You obviously understand this being a pro. I would never willi nilli or hocus pocus my treatment. The people at my DME that I initially dealt with failed at data down loading .They sent my Doctor a blank report! He did not even notice it was blank.I had asked for a duplicate and when I got it even I could see it had no data.It was at an A.W.A.K.E meeting that I found out that my machine was not properly calibrated to my Rx.That is when I took interest in my numbers.I now have a "sleep doctor" Being aware and awake are my goals.If my numbers stink I do not want to wate 6 months for a down load to be done.Real time reaction is not a bad thing. If I find it is not an equiptment failure than you can bet my Sleep Doctor is getting a call. So No I do not want to mess with my numbers I just want to be aware.Good Sleep,Chris
Somnonaut said:Sleep is not an organ. It is not the same as diabetes. You can all sit here and think you are thinking these "novel" thoughts, but the field has wrestled with this issue for decades. You are not coming up with anything new. As for the insurers, they will always win, because they are insurance companies. If we had non-litigation medicine, then maybe easier ways could be found such as in England, but they have Socialised medicine. And who here wants that right? Right?
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And yet here in the UK the DVLA already does have the power, OSAS is a reportable medical condition, and compliance is a requirement for keeping your driving license.
Additionally, the "powers that be" are not the patients suffering from the disease. Who is serving whom here? Outcome is the only thing that matters when treating a chronic disease, yet doctors especially in the socialised medicine environment here, are under pressure to tick the "successfully treated" box as quickly and cheaply as possible. So if you go to the doctor with high blood pressure and pills bring it down there's no investigation as to any other underlying cause. If you go with OSA and CPAP at 15hPa brings it under control there'll be no follow up to see if anything lower could be more appropriate. Worse than that, if OSA is causing your morning hypertension they'll give you tablets for the blood pressure, it'll be low during the day and you'll feel more tired and they'll blame the resulting fatal car accident on driver fatigue...
I suspect in the US the situation is a little different, as the DME has an interest in providing expensive equipment but the insurer has an interest in not doing so.
Which is why in both cases I'm of the opinion that anyone who thinks they have OSA and has the "classic" symptoms and no contra-indications should be able to give a modern, full APAP a trial- there's minimal risk and maximal potential reward. If it stops the snoring and enables their bed partner to sleep through the night that's enough reward. If it increases productivity due to being more wakeful and alert that's a bonus. If it aids weight loss then that's not a bad thing either. If it prevents injury or fatality from accident or disease then that's perfect.
Giving the patient the knowledge to regulate his treatment to be effective and comfortable by a little education and provision of the means to alter the settings on his auto-cpap and providing a way of judging the effectiveness of change can be a bad thing in no way, saving time and money for the medical profession and improving the outcome and compliance by the patient. Yes some people will not want or be able to do so, but that is the kind of judgement a doctor should be making, not "that's your treatment live with it".
Patients are in control of their own treatment all the time already - they decide when to take paracetamol for a headache and when to take co-codamol, when to use phenylephrine or menthol for a stuffy nose, and when to go the the doctor with flu or just stay at home. Now the machinery for OSA is clever enough to detect airway problems why not let the patient decide what provides the best treatment for them, after all at the moment how does the doctor know how effective the treatment is, other than by what the patient tells them?
Somnonaut said:The cases of killing 3 kids is only an example, but MVA from OSA happen every day. it is only a matter of time until the DMV gets its paws on us, and mandates compliance of a physician prescribed treatment. Along the lines of epileptics. But, if the eplieptic said, Hey I got it covered, I use half the pill strength, and I got no probs. I do not think the powers that be would agree.
Patients having clinical manuals is a recipe for disaster.
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And yet, it is a numbers game, in fact almost everything in medical science is - for example
If your AHI is under 4 you don't need cpap.
If your cpap hours per night is over 4 you're compliant
If your blood pressure is over 140/90 you're hypertensive
If your temperature is over 38C you have a fever
By the nature of medical science everything has to be measurable, hence classifications of people as obese or underweight who can be otherwise healthy, because they fit into a number range. Anyone diagnosed with OSA has been diagnosed by numbers, and is being treated by other numbers.
Add to that the numbers that the accoutants at the PCTs or the insurers add up and there's no doubt, it's a numbers game.
Zack said:My gosh, these posts display a huge huge lack of knowledge in sleep medicine. I am not trying to be insulting, but I just hope that people with these types or perceptions can come to learn that this is a part of science and medicine...not a 'numbers game". The feild is young, as an optimist I think that as evolving standards wash out bad practices people will learn that its not as simple as this and some other internet sites say it is, nor is it a insurance conspiracy of something.
Always amazes me.
ymmits said:Very true Chris. After all with CPAP we really are treating a problem by numbers, if CPAP is the solution then we simply find a pressure range that is low enough to be comfortable but high enough to be effective, looking at ODI and AHI, numbers that can be read from the machine or from a cheap oxymeter.
Other than that only the patient can decide if a mask is comfortable, the machine can tell you if it leaks while you're asleep and most modern Auto CPAP machines will let you know if you need some other kind of treatment.
Chris H said:4. Have a class in care, operation and data .Like diabetics do to learn their numbers.
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AHhh, the old "If" game
Which is why in both cases I'm of the opinion that anyone who thinks they have OSA and has the "classic" symptoms and no contra-indications should be able to give a modern, full APAP a trial- there's minimal risk and maximal potential reward. If it stops the snoring and enables their bed partner to sleep through the night that's enough reward. If it increases productivity due to being more wakeful and alert that's a bonus. If it aids weight loss then that's not a bad thing either. If it prevents injury or fatality from accident or disease then that's perfect.
And yet you hold out for "outcomes measures" how is that? The outcome should never be something that can be effected by a very small decrease in AHI. As the field has documented, a small OBJECTIVE change in AHI, can yield a large SUBJECTIVE feeling of relief. Meaning, if you take a patient with an AHI 60 down to 40, he will FEEL better and may think it is "good enough," but is objectively still pathological by a long shot.
In this disorder, you cannot go by perceptions alone. I think that is why the UK is experiencing a broken feedback loop in their medicine.
ymmits said:And yet here in the UK the DVLA already does have the power, OSAS is a reportable medical condition, and compliance is a requirement for keeping your driving license.
Additionally, the "powers that be" are not the patients suffering from the disease. Who is serving whom here? Outcome is the only thing that matters when treating a chronic disease, yet doctors especially in the socialised medicine environment here, are under pressure to tick the "successfully treated" box as quickly and cheaply as possible. So if you go to the doctor with high blood pressure and pills bring it down there's no investigation as to any other underlying cause. If you go with OSA and CPAP at 15hPa brings it under control there'll be no follow up to see if anything lower could be more appropriate. Worse than that, if OSA is causing your morning hypertension they'll give you tablets for the blood pressure, it'll be low during the day and you'll feel more tired and they'll blame the resulting fatal car accident on driver fatigue...
I suspect in the US the situation is a little different, as the DME has an interest in providing expensive equipment but the insurer has an interest in not doing so.
Which is why in both cases I'm of the opinion that anyone who thinks they have OSA and has the "classic" symptoms and no contra-indications should be able to give a modern, full APAP a trial- there's minimal risk and maximal potential reward. If it stops the snoring and enables their bed partner to sleep through the night that's enough reward. If it increases productivity due to being more wakeful and alert that's a bonus. If it aids weight loss then that's not a bad thing either. If it prevents injury or fatality from accident or disease then that's perfect.
Giving the patient the knowledge to regulate his treatment to be effective and comfortable by a little education and provision of the means to alter the settings on his auto-cpap and providing a way of judging the effectiveness of change can be a bad thing in no way, saving time and money for the medical profession and improving the outcome and compliance by the patient. Yes some people will not want or be able to do so, but that is the kind of judgement a doctor should be making, not "that's your treatment live with it".
Patients are in control of their own treatment all the time already - they decide when to take paracetamol for a headache and when to take co-codamol, when to use phenylephrine or menthol for a stuffy nose, and when to go the the doctor with flu or just stay at home. Now the machinery for OSA is clever enough to detect airway problems why not let the patient decide what provides the best treatment for them, after all at the moment how does the doctor know how effective the treatment is, other than by what the patient tells them?
Somnonaut said:The cases of killing 3 kids is only an example, but MVA from OSA happen every day. it is only a matter of time until the DMV gets its paws on us, and mandates compliance of a physician prescribed treatment. Along the lines of epileptics. But, if the eplieptic said, Hey I got it covered, I use half the pill strength, and I got no probs. I do not think the powers that be would agree.
Patients having clinical manuals is a recipe for disaster.
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Permalink Reply by Mary Z on
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Somnonaut, what do you suggest to a person like me who had been through ten sleep studies and Doctor visits every two to three months and still have an AHI sometimes as high as 30 and AI usually in high single digits. I sent my doc a data card and he elected to do a pulse ox where I did not desaturate below 95%, but declined to change my prescription. I take Nuvigil for daytime sleepiness?
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WHen on PAP desaturations are rare, so to not find desaturations is not a finding that one would use to change settings (ie, lower pressure). The most likely scenario the doc was using was to investigate lung issues and were you desating even WITH the PAP on. Now a finding of chronic basal low saturation could be cause to alter therapy.
As for the 10 studies, it seems like you are being followed very closely, and yet you complain that you are not being helped.
Who Rx the Nuvigil? the same sleep doc or another, and does this sleep doc know you are on Nuvigil? Is you major complaint EDS, or other?
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Permalink Reply by liz4cps on
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Which translated means: All those studies didn't help her very much. On the face of it, it's ridiculous that self titration works better than titration with a tech watching you. Yet there are problems. First, there are people like me and Mary Z who seem to get really bad titrations. Second, there are those of us who have seasonal changes, so even if the titration works well in January, it might not work so well in May. Worse, just because a certain pressure worked well last night, it doesn't mean that it will work tonight. Autopap partially fills this gap but problems remain.
Trust me, I was much less tired after adjusting my CPAP pressure. My first titration set my pressure way too low and it wasn't until I started increasing it (very slowly) that I started sleeping at all well. I hate this. I feel like I have to play a stupid guessing game in order to sleep well, but if I didn't! I would not be so out of it. At the time I was sorting this out (10 years ago?), my doctor knew what I was doing and why I needed to.
The last time I went for a titration, the tech told me there was no one pressure that would work for me. I'm on autopap now, but I still need to adjust it as it's not smart enough somehow; 0.5 cm H2O change in the min can help a lot.
I really wish I had the energy to write the software for one of these machines; I have the education to. (Actually, some software I wrote years ago actually was used in one of the machines but it was a general purpose tool.)
Considering how wrong it is to keep the pressure constant in the first place, you're lucky this works on as many patients as it does. Making laws to stop patients like me from trying to compensate for this problem is ridiculous. This is not rocket science, but doctors do not know enough physics to spot this kind of thing on their own, obviously.
I've been meaning to write up the issues about constant pressure for a long time; there is a little on my personal blog. For now, I will just say that I have a brother with a masters in physics, and I asked him about this, because I knew enough physics to think that this was wrong but wasn't sure I had the details right. After I explaining how CPAP works and the problem I had spotted, and I asked him if I was right. He not only agreed with me, but thought that I had to be wrong about CPAP. He kept asking me if I was sure that the pressure was kept constant. He couldn't believe it really was. As I said, it's not rocket science. Ever wonder what causes flow limitation?
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