help me address these comments

Calist, the problem that I have with many of your posts is the spewing of your personal opinion as fact. It reminds me of my teenage daughter, who I dearly love, but is as pig headed as any human being can be. She thinks that if she believes something, it becomes truth and fact and tells anyone who will listen about HER truth. The problem with that is that like you, sometimes what she believes isn't necessarily reality and truth all across the board.

I remember a few years ago, the brother of a friend of hers worked at a major fast food restaurant (major chain that I won't name). Apparently, he relayed how they didn't clean the grill very often at the location where he worked. His sister relayed this to my daughter that interpreted it to mean that NONE of the locations of this restaurant EVER cleaned their grills. Because she believed it to be truth, she spouted this "truth" to anyone that would listen and got totally offended when it was pointed out to her that she was WRONG.

And for what it's worth, I live in the "real world" just like you claim to. You may or may not be a professional in the sleep field. I do not know, but I do know that I have seen you spew supposed facts that are not accurate. Perhaps in your world, those are the facts and thus YOUR reality, but that doesn't mean that every other place on the planet functions in the same manner.

If not for this forum, I can assure you that I would still be using a bipap machine that wasn't handling my situation adequately and I'd probably be dead and not here to tell you how you come across to the people here. I'll take their non professional opinions and help over yours any day. So if that's what you aimed for, congratulations. You achieved it.

Madalot wrote:Calist, the problem that I have with many of your posts is the spewing of your personal opinion as fact. It reminds me of my teenage daughter, who I dearly love, but is as pig headed as any human being can be. She thinks that if she believes something, it becomes truth and fact and tells anyone who will listen about HER truth. The problem with that is that like you, sometimes what she believes isn't necessarily reality and truth all across the board.

Granted and I can clearly see why you would have reservations. Allow me to point something out just for a moment. Scroll down to the very bottom of the page. Do you see at the very bottom where it says....

"The information provided on this site is not intended nor recommended
as a substitute for professional medical advice."

Do you see where it says that? I am a medical professional pointing it out to you. I am an RPSGT with ten years in sleep science alone and I am pointing out where the website itself tells you that it is not intended to be a substitute for me.

I remember a few years ago, the brother of a friend of hers worked at a major fast food restaurant (major chain that I won't name). Apparently, he relayed how they didn't clean the grill very often at the location where he worked. His sister relayed this to my daughter that interpreted it to mean that NONE of the locations of this restaurant EVER cleaned their grills. Because she believed it to be truth, she spouted this "truth" to anyone that would listen and got totally offended when it was pointed out to her that she was WRONG.

And that is precisely why I have been pointing out incorrect statements all across the forum. This is a forum wide game of telephone.

And for what it's worth, I live in the "real world" just like you claim to.

and I'm sure that whatever you do in the real world, you do it very well.

You may or may not be a professional in the sleep field. I do not know,

There is only one way to find out....

but I do know that I have seen you spew supposed facts that are not accurate.

Not accurate because you have read all those books I mentioned earlier? Not accurate because you have conducted your own clinical trials? My facts are accurate. I use them every day and I confirm them every day. I run PSGs and PSGs are the actual foundation of clinical research. In fact the only other person on this site that does what I do, came, agreed with me, told me I was crazy for trying to relate this to patients and then left when some one called her names.

Perhaps in your world, those are the facts and thus YOUR reality, but that doesn't mean that every other place on the planet functions in the same manner.

Science is the same everywhere, the only part of it that can change is your perception of it.

If not for this forum, I can assure you that I would still be using a bipap machine that wasn't handling my situation adequately and I'd probably be dead and not here to tell you how you come across to the people here. I'll take their non professional opinions and help over yours any day. So if that's what you aimed for, congratulations. You achieved it.

This forum did not create bipap machines, apap machines, masks or medicine. I can understand that you feel this forum has helped you more than medicine but need I remind you that if not for medicine you would never have known there was anything wrong with you to begin with.

calist writes:

After that, you should have very few questions.

It's only a fool who has no questions. The wise one knows that the more knowledge he/she has, the more questions there are.

Calist wrote:This forum did not create bipap machines, apap machines, masks or medicine. I can understand that you feel this forum has helped you more than medicine but need I remind you that if not for medicine you would never have known there was anything wrong with you to begin with.

Classic example that you know nothing of what you speak. Look down at the bottom of my post and see where equipment would normally be -- I am on a VENTILATOR and I am on a ventilator because I have a neuromuscular disease that was making it difficult for me to breathe when I laid down at night. So the above comment is totally, 100% wrong and inaccurate. Unless, of course, you want to tell me that in your vast experience in sleep medicine, a person gasping for air BEFORE they fall asleep and having to sleep almost sitting up in order to breathe, is normal.

And you HAVE made comments about equipment, medical professionals, RTs, DMEs and the like that are WRONG.

However, just like trying to reason with my daughter, I am only banging my head against the wall because just like my teenage daughter, you do not want to hear anything other than how great you are and how lucky I am to have you telling me what's what in the world.

Edited to add: Calist, I don't want to be rude to you. You very well may be a professional in the sleep field and may very well have relayed some accurate information. I haven't bothered to research much of it. All I know is that you HAVE, in fact, made comments as statements of fact that from my EXPERIENCE are not accurate. And that would be okay if you phrased them in a way that said you believed it to be true, but you don't. You make the comments as if to say anyone that believes differently is stupid and needs to know better. And that's a problem, especially if there are people ANYWHERE that can dispute the facts as you portray them.

robysue wrote:calist writes:

After that, you should have very few questions.

It's only a fool who has no questions. The wise one knows that the more knowledge he/she has, the more questions there are.

And that is precisely why I recommended those books. Reading one page of the first book would teach anyone on this forum more about sleep then they could have ever gotten here.

So you've been trained to do a great PSG, at least it seems you've done your reading, but what does that have to do with tips on how to prevent leaks, how to adjust a mask, what bed pillows are best, how to train yourself to sleep on your sides, what to do about aeorphagia, sore noses, noisy machines, how to keep your mask on all night, what to do about snores, unsupportive spouses and all the "is this normal" questions. I could go on and on. I"ve learned all that and more importantly, how to make careful pressure adjustments and watch for trends on my daily data. I can't imagine you being on the front lines consulting with any patients and having them become successful cpappers as most of us here are. Even the "specialists" I fired who didn't have a clue about cpap therapy were always courteous and professional and never "spoke down" to me. Have you read some of the joyous newbie posts thanking everyone here for helping them finally achieve a good night's sleep after being jerked around and suffering for months in the medical community? Our own Primary Dr tells his patients about this forum now that he sees so much improvement in my husband's health because of the knowledge I gained here and I will keep on learning. I am so grateful to those who keep paying it forward.

Madalot wrote:

Calist wrote:This forum did not create bipap machines, apap machines, masks or medicine. I can understand that you feel this forum has helped you more than medicine but need I remind you that if not for medicine you would never have known there was anything wrong with you to begin with.

Classic example that you know nothing of what you speak. Look down at the bottom of my post and see where equipment would normally be -- I am on a VENTILATOR and I am on a ventilator because I have a neuromuscular disease that was making it difficult for me to breathe when I laid down at night. So the above comment is totally, 100% wrong and inaccurate. Unless, of course, you want to tell me that in your vast experience in sleep medicine, a person gasping for air BEFORE they fall asleep and having to sleep almost sitting up in order to breathe, is normal.

I will tell you that ventilators don't use AVAPS so that leads me to believe that you are not on a ventilator. You are however using pressure support assist(ST), so some one rigged up a bipap as a ventilator and pretty much told you it was a ventilator. I'm sorry to inform you however that a ventilator is completely different. As for my vast experience in sleep medicine, I would need more of a patient history. Which neuromuscular disease do you have?

And you HAVE made comments about equipment, medical professionals, RTs, DMEs and the like that are WRONG.

Little message at the bottom of the page says I'm right.

However, just like trying to reason with my daughter, I am only banging my head against the wall because just like my teenage daughter, you do not want to hear anything other than how great you are and how lucky I am to have you telling me what's what in the world.

Actually tell me where you live. Give me a city name and I'll call over there, find a decent accredited lab and get the sleep doc to give you a full review free of charge. I would do it just to make sure you aren't being screwed with by your DME and god knows what crazy ideas this forum has put into your head. Give me your city name, I'll find some one out there. You give him a call and go in and see them on your own time. 100% free although I have to warn you.... it is medicine.

Calist wrote:

Madalot wrote:

Calist wrote:This forum did not create bipap machines, apap machines, masks or medicine. I can understand that you feel this forum has helped you more than medicine but need I remind you that if not for medicine you would never have known there was anything wrong with you to begin with.

Classic example that you know nothing of what you speak. Look down at the bottom of my post and see where equipment would normally be -- I am on a VENTILATOR and I am on a ventilator because I have a neuromuscular disease that was making it difficult for me to breathe when I laid down at night. So the above comment is totally, 100% wrong and inaccurate. Unless, of course, you want to tell me that in your vast experience in sleep medicine, a person gasping for air BEFORE they fall asleep and having to sleep almost sitting up in order to breathe, is normal.

I will tell you that ventilators don't use AVAPS so that leads me to believe that you are not on a ventilator. You are however using pressure support assist(ST), so some one rigged up a bipap as a ventilator and pretty much told you it was a ventilator. I'm sorry to inform you however that a ventilator is completely different. As for my vast experience in sleep medicine, I would need more of a patient history. Which neuromuscular disease do you have?

And you HAVE made comments about equipment, medical professionals, RTs, DMEs and the like that are WRONG.

Little message at the bottom of the page says I'm right.

However, just like trying to reason with my daughter, I am only banging my head against the wall because just like my teenage daughter, you do not want to hear anything other than how great you are and how lucky I am to have you telling me what's what in the world.

Actually tell me where you live. Give me a city name and I'll call over there, find a decent accredited lab and get the sleep doc to give you a full review free of charge. I would do it just to make sure you aren't being screwed with by your DME and god knows what crazy ideas this forum has put into your head. Give me your city name, I'll find some one out there. You give him a call and go in and see them on your own time. 100% free although I have to warn you.... it is medicine.

OMG -- Calist, now I have to say, 100% and without a doubt -- you are full of shit. Plain and simple. Go do research. I am on a ventilator that runs in AVAPS and you are DEAD WRONG on that.

It is a Respironics Trilogy 100 (go look it up you smart ass know it all) -- and look up the clinician's documentation. AVAPS is one of the settings and I am on it.

God -- what a pain in the ass you are. I hope everyone runs like hell from you at this point. You are just a piece of work.

But -- now I know for certain that you are phoney all the way around. 100% phoney. Damn -- you almost had me believing that you work in the sleep field.

Ventilators don't run in AVAPS -- OMG. My ventilator is sticking its tongue out at you too.

My apologies to the good people of this forum for my previous post, the anger and the way I expressed it. After everything I have been through in the last year, I find Calist's comments to me insulting and offensive. But I realize the comments were intended to do just that and I fell for it, hook, line and sinker.

To my friends here that have given so much of themselves to help me get where I am in my therapy and treatment, I thank you and apologize again for my outburst at Calist's comments.

DoriC wrote:So you've been trained to do a great PSG, at least it seems you've done your reading, but what does that have to do with tips on how to prevent leaks, how to adjust a mask, what bed pillows are best, how to train yourself to sleep on your sides, what to do about aeorphagia, sore noses, noisy machines, how to keep your mask on all night, what to do about snores, unsupportive spouses and all the "is this normal" questions. I could go on and on.

Nothing actually, I have nothing to say about that. What I have a problem with is people advocating alterations of CPAP machines, self diagnosing, self treating, encouraging others to defy medical advice in favor of 'peer recommendations'. I have a problem with a DME store website that creates a forum for the purposes of generating traffic to their business and paying people to pose as forum users and telling patients that they don't have to listen to their physicians. Telling them that they have a right to make decisions for themselves and that they know more than their sleep doc. That kind of practice is inherently dangerous.

I"ve learned all that and more importantly, how to make careful pressure adjustments and watch for trends on my daily data.

Your daily data. It is statements like that which keep me up at night. Your daily data. What is your daily data based on? Cessations of airflow? 02 desaturations? Which stage of sleep did you have those desaturations? Can leak cause a desaturation? What if the device was removed completely during a desaturation?

Let me educate you for one moment.

An obstructive apnea is a complete cessation of airflow in the presence of respiratory effort resulting in an arousal.

A central Apnea is a complete cessation of airflow in the presence of a complete cessation of respiratory effort.

A hypopnea is a 50% reduction (or greater) of airflow in the presence of respiratory effort followed by a 4% desaturation of sa02 (or greater)

All of which need to be 10seconds long (or greater). Can your machine judge all of that? Does your machine even know when you are asleep? How is your machine calculating your AHI exactly? You adjust CPAP pressures based on this data, surely you know where it is getting it's data from right? Or did some one tell you that this was the way to do it? I came here by following a link on youtube that told people all about how doctors didn't know what they were talking about and how people should just buy an APAP from CPAP.COM and make up their own pressure. They went on to explain that it was easy to do by using APAP data.

"The information provided on this site is not intended nor recommended
as a substitute for professional medical advice."

Here is some medical advice for you....

Quit listening to these people.

I can't imagine you being on the front lines consulting with any patients and having them become successful cpappers as most of us here are.

Then why don't you come out to Colorado and see it for yourself? I can even introduce you to some of my patients.

Even the "specialists" I fired who didn't have a clue about cpap therapy were always courteous and professional and never "spoke down" to me.

They deal with people like you all the time. They put on a smile and say "Thank you for your time" because they are used to it. I yell and talk-down because I care.

Have you read some of the joyous newbie posts thanking everyone here for helping them finally achieve a good night's sleep after being jerked around and suffering for months in the medical community?

I have but this is not the answer. I speak to these guys all the time when they get dragged back into my lab years down the line "I tried this and it didn't work. I tried that and it didn't work." I'm not going to say that some of them won't have a pleasant time but from what I've seen... some of them don't have OSA, some of them have such a lite case of it that I'm sure they will really enjoy the self-treatment they have done and some of them will use your forum as an excuse to 'go it alone' until a case of chronic pneumonia rips up their lungs and hurls them into an ICU some where. Then they will be retitrated, re-evaluated and they will have to start all over again after being seriously wounded by their pride and the misgivings placed on this forum. As a sleep professional, I can not stress just how much damage a site like this can cause. I keep remarking about the little note at the bottom of the page but please understand that if CPAP.com is ever sued, that is the first thing they are going to mention.

Our own Primary Dr tells his patients about this forum now that he sees so much improvement in my husband's health because of the knowledge I gained here and I will keep on learning. I am so grateful to those who keep paying it forward.

What is this doctor's name?

Based on the last few posts by Calist, I strongly suggest that everyone stop replying to his/her posts in any fashion. I am now 100% convinced that Calist's motives are malicious. Requesting personal information including location, name of doctors, etc., is the icing on the cake for me.

And when someone starts trying to discredit Dori -- oh, that's asking for it from a lot of people, including me.

Madalot wrote:

Calist wrote:

Madalot wrote:

Calist wrote:This forum did not create bipap machines, apap machines, masks or medicine. I can understand that you feel this forum has helped you more than medicine but need I remind you that if not for medicine you would never have known there was anything wrong with you to begin with.

Classic example that you know nothing of what you speak. Look down at the bottom of my post and see where equipment would normally be -- I am on a VENTILATOR and I am on a ventilator because I have a neuromuscular disease that was making it difficult for me to breathe when I laid down at night. So the above comment is totally, 100% wrong and inaccurate. Unless, of course, you want to tell me that in your vast experience in sleep medicine, a person gasping for air BEFORE they fall asleep and having to sleep almost sitting up in order to breathe, is normal.

I will tell you that ventilators don't use AVAPS so that leads me to believe that you are not on a ventilator. You are however using pressure support assist(ST), so some one rigged up a bipap as a ventilator and pretty much told you it was a ventilator. I'm sorry to inform you however that a ventilator is completely different. As for my vast experience in sleep medicine, I would need more of a patient history. Which neuromuscular disease do you have?

And you HAVE made comments about equipment, medical professionals, RTs, DMEs and the like that are WRONG.

Little message at the bottom of the page says I'm right.

However, just like trying to reason with my daughter, I am only banging my head against the wall because just like my teenage daughter, you do not want to hear anything other than how great you are and how lucky I am to have you telling me what's what in the world.

Actually tell me where you live. Give me a city name and I'll call over there, find a decent accredited lab and get the sleep doc to give you a full review free of charge. I would do it just to make sure you aren't being screwed with by your DME and god knows what crazy ideas this forum has put into your head. Give me your city name, I'll find some one out there. You give him a call and go in and see them on your own time. 100% free although I have to warn you.... it is medicine.

OMG -- Calist, now I have to say, 100% and without a doubt -- you are full of shit. Plain and simple. Go do research. I am on a ventilator that runs in AVAPS and you are DEAD WRONG on that.

It is a Respironics Trilogy 100 (go look it up you smart ass know it all) -- and look up the clinician's documentation. AVAPS is one of the settings and I am on it.

God -- what a pain in the ass you are. I hope everyone runs like hell from you at this point. You are just a piece of work.

But -- now I know for certain that you are phoney all the way around. 100% phoney. Damn -- you almost had me believing that you work in the sleep field.

Ventilators don't run in AVAPS -- OMG. My ventilator is sticking its tongue out at you too.

Trilogy100 is a highly versatile, lightweight (11lb) life-support ventilator that has been developed to meet the needs of a wide range of patients in the home and alternative care settings. The Trilogy100 portable ventilator features Respironics’ proven BiPAP technology with leak compensation, volume and pressure control ventilation, and the ability to ventilate with either a mask or a tracheal tube.

Can you give me a link to the place where it talks about the trilogy100 using avaps?

Madalot wrote:Based on the last few posts by Calist, I strongly suggest that everyone stop replying to his/her posts in any fashion. I am now 100% convinced that Calist's motives are malicious. Requesting personal information including location, name of doctors, etc., is the icing on the cake for me.

You just said that your doctor recommends cpaptalk to patients. Sorry if this is a bit too real for you but I would like to know why he is recommending a webforum that he has never seen. I am ASSUMING he has never seen this webforum because no boarded physician would ever knowingly recommend that patients get together and make up treatments for themselves. If he is, then I would definitely like to speak to him in fact I know a lot of people that would enjoy speaking to him.

Madalot wrote:
OMG -- Calist, now I have to say, 100% and without a doubt -- you are full of shit. Plain and simple. Go do research. I am on a ventilator that runs in AVAPS and you are DEAD WRONG on that.

It is a Respironics Trilogy 100 (go look it up you smart ass know it all) -- and look up the clinician's documentation. AVAPS is one of the settings and I am on it.

Still looking for AVAPs on this thing. Find it yet?

Calist wrote:

Madalot wrote:

Calist wrote:

Madalot wrote:

Calist wrote:This forum did not create bipap machines, apap machines, masks or medicine. I can understand that you feel this forum has helped you more than medicine but need I remind you that if not for medicine you would never have known there was anything wrong with you to begin with.

Classic example that you know nothing of what you speak. Look down at the bottom of my post and see where equipment would normally be -- I am on a VENTILATOR and I am on a ventilator because I have a neuromuscular disease that was making it difficult for me to breathe when I laid down at night. So the above comment is totally, 100% wrong and inaccurate. Unless, of course, you want to tell me that in your vast experience in sleep medicine, a person gasping for air BEFORE they fall asleep and having to sleep almost sitting up in order to breathe, is normal.

I will tell you that ventilators don't use AVAPS so that leads me to believe that you are not on a ventilator. You are however using pressure support assist(ST), so some one rigged up a bipap as a ventilator and pretty much told you it was a ventilator. I'm sorry to inform you however that a ventilator is completely different. As for my vast experience in sleep medicine, I would need more of a patient history. Which neuromuscular disease do you have?

And you HAVE made comments about equipment, medical professionals, RTs, DMEs and the like that are WRONG.

Little message at the bottom of the page says I'm right.

However, just like trying to reason with my daughter, I am only banging my head against the wall because just like my teenage daughter, you do not want to hear anything other than how great you are and how lucky I am to have you telling me what's what in the world.

Actually tell me where you live. Give me a city name and I'll call over there, find a decent accredited lab and get the sleep doc to give you a full review free of charge. I would do it just to make sure you aren't being screwed with by your DME and god knows what crazy ideas this forum has put into your head. Give me your city name, I'll find some one out there. You give him a call and go in and see them on your own time. 100% free although I have to warn you.... it is medicine.

OMG -- Calist, now I have to say, 100% and without a doubt -- you are full of shit. Plain and simple. Go do research. I am on a ventilator that runs in AVAPS and you are DEAD WRONG on that.

It is a Respironics Trilogy 100 (go look it up you smart ass know it all) -- and look up the clinician's documentation. AVAPS is one of the settings and I am on it.

God -- what a pain in the ass you are. I hope everyone runs like hell from you at this point. You are just a piece of work.

But -- now I know for certain that you are phoney all the way around. 100% phoney. Damn -- you almost had me believing that you work in the sleep field.

Ventilators don't run in AVAPS -- OMG. My ventilator is sticking its tongue out at you too.

Trilogy100 is a highly versatile, lightweight (11lb) life-support ventilator that has been developed to meet the needs of a wide range of patients in the home and alternative care settings. The Trilogy100 portable ventilator features Respironics’ proven BiPAP technology with leak compensation, volume and pressure control ventilation, and the ability to ventilate with either a mask or a tracheal tube.

Can you give me a link to the place where it talks about the trilogy100 using avaps?

Why? You said I can't be on a ventilator and made it clear that you know more than I do about MY equipment and my treatment. Your pompous attitude has pissed me off. I have been through so much in the last year and to have some arrogant asshole try to tell me that I know nothing of what's going on is insulting.

A lot of people on this forum have been through this with me every step of the way. I deal with top notch doctors at MAJOR university hospitals (yes, PLURAL) and believe me, they know way more than you do. And not one person on this forum, UNTIL YOU, had the audacity to tell me that they know more about my condition and treatment than my doctors and I do. And to have you say that no ventilator does AVAPS when I know, without any doubt whatsoever, that mine does, just proves that you know not of what you speak.

Damn -- it takes a lot to irritate me this much and you have succeeded beyond anything I ever could have imagined.

And if you really are a sleep professional, you could have found the link yourself.