"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 RockRpsgt on
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CPAPs are getting smarter. However they will not tell you when you need another treatment or if there is a secondary sleep disorder.
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Permalink Reply by Somnonaut on
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WHY would you possibly want to contribute to a board that facilitates that? He or she is waiting for the lawyer to call from the person who adjusted their pressure based on the posting and has now crashed their car into a school bus killing 3 kids, because "they felt they knew better than the doctor who was treating them." The liability is off the chart people. If you want something that can act in a dynamic way, ask your physician if you are a candidate for an auto-adjusting unit. They too have their own downside also. Do not raise or lower your pressure willy-nilly, it of course effects your therapy and CPAP therapy effects your mental functioning.
Sleep therapies are some of the only therapies in medicine that can have an effect on others besides the patient.
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Permalink Reply by Mary Z on
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The people on this forum don't act, for the most part, in a "willy-nilly" fashion. Physicians are sadly lacking in their treatment and follow up. We are left to fend for ourselves. Ans as always there is the caveat that we are not doctors, if you don't know what you're doing leave your machine alone.
I take exception to your statement theat "sleep therapies are some of the only therapies in medicine that can have an effect on others besides the patient." Do you assume all physicians are johnny on the spot and always right in their titrations. Diabetes also carries with it the risk of adverse effects as does epilepsy and dementia, to name but a few.
By the way, what are you doing on this forum which is meant to empower and help the patient with problems, rather mask fit or titration problems?
Did you read the whole thread?
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Mary Z,
Are you defending the other site? Or are you lashing out at what you perceive to be an insinuation of people here acting "willy-nilly". Yes, people changing their pressures with no objective data would be willy-nilly, no matter how you slice it. As for the doc, let them take the risk associated with your care, not foist the risk upon your own shoulders by willy-nilly changing the pressures to no objective data. Yes, as a 25+ year veteran in sleep and a 10+ year user of CPAP, I have a pretty good idea as to what is happening out there. I am just trying to raise people's awareness as to other risks, legal or otherwise, associated with a therapy.
I have been invited to join the forum by its creator, that is why I am on this forum. Why are you here?
Now, in terms of reading the "whole thread" do you mean on the other site? This thread consisted of one post long when I initiated my reply. Rock posted something in between me writing.
You sound as if you have had a bad sleep doctor experience. Have you?
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I tried to edit the above reply.
I apologize for not recognizing the first page of the thread, the system puts you right to the end, and I assumed it was a fresh thread.
Regardless, I stand by my point.
You are all conflating manufacturer with DME. They both should react to market forces. The manfucturers have been reacting for decades to market forces. As of the last 10 years, the force has been on compliance, and true compliance (time spent at set pressure). This takes some higher level monitoring of the electronic and pneumatic goings on within the box. The software then has to convey that data. The DME is the one who is responsible to get the data and convey it to the doc. Make sure you align your anger with the appropriate party.
Manufacturers are only allowed to provide system that are FDA approved. I doubt highly the FDA would allow a unit that afforded the patient the ability to adjust the dosage, fore, that is what one is doing when they will-nilly change their settings. That is why some settings are considered non-clinically relevant (such as ramp time, or ramp pressure, CFLEX [Respironics] or EPR [Resmed]) these are considered by the FDA to be for comfort only. To adjust the pressure, you are changing the prescription and that is and should not be in your control. Just as you are not allowed to change the amount of medicine in the capsule. Technically, I would predict anyone changing a capsule's strength, even if only used on themselves, could face other legal challenges.
The clinican's manual is just that for clinicians. Mike, this forum should never openly promote using the clinical manual to willy-nilly change pressures. You can only imagine the storm of legal entaglements to follow. When there is no objective data to support one's selection of pressure, they are then acting as physician, and as I pointed up thread, if that is insufficient and you end up causing harm to others, you are in for a sever downside to your little adventure.
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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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I guess we'll have to agree to disaree. Yes I have had bad experiences with two sleep doctors who after three years have not gotten me titrated properly. In three years I have been through ten sleep studies. The last time the doctor said we have it! No apneas at 4/8. I went home and my numbers had not budged. I know how to read the numbers off my machine and I have the software which is how I know with visits every two- four months they were unable to get my AHI under the 20's and AI barely under 10. Yes, I've given up on them and believe I can do better myself by being systematic about changing pressures based on numbers. Any one with untreated sleep apnea or hypersomnia should have enough sense not to get on the road. How many episodes of someone changing their own numbers and killing three kids can you cite. Also, I defend my right to have a clinical manual.
I think you're a little heavy handed in your response to me. Who's angry? Not me. I don't think the majority of people on this board would agree with you and do uphold their right to , with time and experience , make small adjustments (and this is what we are talking about, small adjustments) in their/our pressure.
Were you titrated easiy? Do you have an attentive doctor who knows how to do his/her job?
A doc who responds to you in a timely fashion when you have problems? A lot of us don't have those kind of docs.
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"Any one with untreated sleep apnea or hypersomnia should have enough sense not to get on the road."
This is where your argument falls apart.
IF you adjust your pressure, technically you are "untreated". Or so sleepy that you did not have the sense not to get on the road. So without objective data supporting your new pressure you should not be allowed on the road.
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 Tom Cannon on
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What planet did Mr. Willy Nilly come from; apparently the have DME's who report the data to the doctor. Har har harty har har, that's a good one. You're down in the trenches now so you'll need to adjust your ivory tower attitudes to reality.
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Somnonaut, enough already. Don't you think you've made your point by now? I disagree with you and have nothing further to say to you on the subject.
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Permalink Reply by Chris H on
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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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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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