A little disturbed!

I am getting the feeling the more that I'm here that this is the rebel against the medical field board. I think we need to put some trust in the medical field. Many of you sound as though you just use a dr. to get a CPAP prescription & then you are off to buy your own equipment & do whatever you want with it! You are telling people here to get their machines & then "people" here will tell you (or even do it for you) how to adjust your machine, etc. Well, I'm all for being informed & taking charge of my health care, but many of you are far too militant. You have no idea what you are really doing! You just think you do! It's interesting that you will state something as a fact & then as I research it or ask questions, many times it is apparent you really DON'T know! I just think people should be aware that the people here are NOT experts & are giving their opinions. You have elevated some posters here to idol status & they are no more an expert than the guy living next door to me! At some point you need to trust your dr. & the people who DO have expertise in their field. Like I said, nothing wrong with being pro active in your health care, but this board is getting downright scary & I think it should be posted that the majority of these posts are OPINIONS, not proven fact!
Also, to those who SLAM people for asking questions that have been previously asked, you need to find something else to do. Someone asked a question about DME & some smart aleck decided to tell that person to do what everyone else is doing & to go buy their OWN qeusipment form on-line. Buying on-line is fine, BUT, not everyone has insurance & it's not always cheaper to do this. You also can't try on masks on-line. I paid $138.00 (insurance co-pay) for my CPAP machine which retailed for almost $2,000. Now, I know it was cheaper on-line to buy, but that would have been almost $800.00 out of my pocket (say here on CPAP.com) vrs. $138.00. You do the math. If you can buy cheaper on-line than with insurance, go for it, but I think the majority of people here buying on-line are doing it so they can have their CPAP prescription turned into an auto pap so they can play god with their sleep apnea. I sure hope you guys/gals are all right about your guesses as to what's the best treatment for you. I'm not ready to take that gamble. I'm doing great on my CPAP my DOCTOR prescribed & if I have any problems I'll go talk to him first. He is well versed in sleep apnea problems & is a cardo-pulminary dr, so I know there are knowledgeable people out there. Good luck! You are going to need it going on you own!
P.S. To the "guys" who obviously think it's funny to interject "sexual" inuendos & jokes on this board, five words, "Get a Life!" and "Grow up!"

Wow! With a couple of exceptions, you pretty much stated what I've been feeling over the past few days concerning what's been going on with this forum. As I said before, in the beginning I got great support and some really good advice. A few days ago, I got sarcasm and personal attacks. A few of the diehards such as Rested Gal and Titrator have continued to give advice with the caveat that they are not doctors. Others have not. I got a response from someone that clonazepam causes more sleep apneas and they included a link. Eagerly, I went to the link and no mention of increased sleep apneas was mentioned. I asked for clarification and got no response. Further research on my own indicated that this person was correct. Several days of further research.

I'll probably get blasted for this response but I can take it.....it's called turning off my computer!

Jeanne

Lets have a guest flame war!

At the end of the day it's simple: am I feeling good because I got restful sleep? Who cares more about how I'm feeling on any given day, me or my doctor?

There are good doctors. Experts who put patients first. But for every doctor like that, there's one taking DME or sleep lab kick backs, or trusting the huge DMEs who say that Auto's are dangerous, or worst and most common just have too many other areas of focus and are ignorant but listened to because they are doctors.

So, I've got a choice. I can read up on my treatment and experiement until I feel well. I suppose if that's being the "God" of my own treatment - then yes, bow down baby. Or I can bow down to a doctor who may or may not have my best interest at heart.

Why risk it? Tradition is not a good enough reason. I need MY sleep.

Whew!! Well, I guess "Guest" has told us...

In all fairness, Guest, you make some interesting points in that a forum such as this is not going to appeal to everyone and, it is unwise for any of us to accept the information given here and not seek out other info, especially from one's doctor.

I worked with my Dr. until such time as I felt that his treatment of me was not helping me. Then, armed with what I learned from this forum, I sought out another clinic and found a Dr. that is really helpful, informed, up-to-date, and interested. Based on info from all sources (Dr., this fourm, Rested Gal (who I think is the best) my own research, etc.,) I have been able to get this sleep apnea under control and am feeling much better.

I would agree with you that the joking on the forum sometimes gets in the way of serious answers for newcomers who might be scared off and, that we need to be sensitive to ALL users of the forum, not letting our personal prejudices spill out. I have commented to the forum more than once about comments that I found to be highly biggoted and I did not find much support. None-the-less, the degree to which I have been offended by the bigotry has not been greater than the benefit that I have received from information, guidance, suggestions and support.

I'd encourage you to continue with this forum, AND keep learning from many sources. There are alot of seriously-smart people who contribute to this forum. If you have not gotten a question answered, ask the question again. And, if possible, try to look past the things on this forum that annoy you and find the things that will help you.

Guest,

Sorry you seem offended by the "advice" we give. Nobody here has claimed to be an expert and some go out of their way to provide some sort of disclaimer every time they post. I myself rely on the disclaimer that is at the bottom of every page, if you would have taken the time to read it. "The information provided on this site is not intended nor recommended as a substitute for professional medical advice." Seems to me this says it all. Most of us are not medical professionals, some here are. If you are getting good advice from your medical professionals you are lucky. Many of us have gotten such poor medical help in regard to our treatment of OSA that we have come here to share our frustration and our experiences. None of us are "guessing" what treatment is best for us. We buy machines that keep track of our overnight data and use well known medical standards to judge the results. You may feel you are not well informed enough to make decisions for yourself. Please don't accuse any of us of endangering our own health by "Guessing" about our care.

I think what is "down right scary" is that someone like you comes here anonymously and makes blanket statements and ignores disclaimers and has the "balls" to claim we are to stupid to manage our own healthcare.

It's because of people like you that blindly allow the substandard treatment many of us have received to go on unquestioned,

Nenetx2004,

I'm not going to blast you. I'll just ask that you please read the disclaimer at the bottom of every page before you claim that any of us have misrepresented ourselves as medical professionals in providing the advice we have given.

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

First off, many folks here have stated that they are a) not doctors, b) don't play doctors on TV. Personally I have always tried to include a medical reference if relevent.

But. If you are telling me to blindly trust the medical community. Sorry bud. Not going there. I am very proactive in my health care and suggest that others are too. If my doctor prescribes something and I don't understand why, I ask. Some don't. Appears that you are part of those that don't. I *hope* you have a very good doc to put that much faith in his/her abilities.

As for buying online. Doing the math has ALWAYS been stated. Yes a few folks here are quick to say, "Dump your DME" But that is usually in response to a plea for help dealing with a BAD DME.

No one here is advocating bypassing the medical community. I have not seen any do it yourself guides to removing your gall bladder posted here, nor diagnosing your own SA. I have seen people suggest that if therapy isn't working, find a way to make it work. Unfortunately for some that means taking more control of ones health care than others. In your case you don't feel comfortable, so don't.

And if you find that a post has an incorrect info, point it out!

This forum has gone downhill. A number of "knowledgable" posters
could easily be convicted of practicing medicine without a license.
Since the joksters have joined, this forum has declined greatly in
value. Please cut out the chit-chat, and boil the repeated posts down
to a good FAQ like "Newbies read this first". It should contain answers
to the questions which get posted over and over again. In most states
you need a Doctor's prescription to change pressures on a CPAP.
Clinical manuals were not intended to be given out to the end user.
Sooner or later, someone is going to read this forum, and do some
experiment, and end up dead. How will you feel then? Please
consider breaking this forum up into two separate forums. One
could stick to the facts, and the other could be a "touchy-feely"
support style, hand-holding forum.

Wader,

I never said that anyone was claiming to be a medical expert. And yes, I have read the disclaimer. However, there are people that are so excited to find that there is a forum that supports people with sleep apnea that they may miss that disclaimer.

I am an informed patient. I did my research long before I was given a mask and a machine. However, the "tone" of some responses has gone a long way from being supportive and towards being downright insulting. And yes, I know that it's almost impossible to determine tone from a written statement (70% or more of all human communication is non-verbal). I agree that people need to not trust the medical community completely and should be as informed as possible.

I don't blame anyone for wanting to post anonymously. That's their right. I don't think it has anything to do with not having "balls".

Jeanne (my real name)

Guest and Nenetx2004,

Without bothering to comment one way or the other about the opinions stated in your posts. Why do you read the forum if you have such obvious objections to its content? Why are you wasting your time? Has god appointed you to save us from ourselves? Maybe you're bored and this is just flame bait?


jjb

nenetx2004 wrote:Wader, I never said that anyone was claiming to be a medical expert.

Jeanne, the quote below seems to say otherwise.

nenetx2004 wrote:A few of the diehards such as Rested Gal and Titrator have continued to give advice with the caveat that they are not doctors. Others have not.

In case you were under the impression that I am a doctor, I am not, but I do use an APAP everytime I go to sleep. I think this gives me enough expertice to be allowed to post my comments.

nenetx2004 wrote:yes, I have read the disclaimer. However, there are people that are so excited to find that there is a forum that supports people with sleep apnea that they may miss that disclaimer.

How many times do you want me to repeat the disclaimer so that some person too "excited" to find it might not miss it and confuse my advice as that of a doctors.

The tone of comments can work both ways. Those of us who post regularily on this forum put a LOT of thought and effort into our posts and get frustrated when people choose to swoop in anonimously and post blanket critisizm of what is being said.

The "balls" comment was just my little non-verbal jab at the "Guests" offense at the occasional humor posted on the forum.

Please take your own advice and work on the "tone" of your own posts because I for one, have been offended by them.

jjb wrote:Guest and Nenetx2004, Why are you wasting your time? Has god appointed you to save us from ourselves? Maybe you're bored and this is just flame bait?

Thanks, jjb!

Boy, I took the bait, hook, line and sinker!

Nice to know we have you to inject some sanity here.

Wow, everyone is so cranky. It sure looks like alot of people forgot to use their CPAP last night.

day for night,

My "self tweaked" APAP is working for me fabulously, That's why I have the energy to defend myself and those of us on the forum working hard to help others find their way.

I am somewhat new to all of this and very new to this forum. When I had my first apnea diagnosis, it was a few years ago using one of those aduio breath recorders that ENTs use. His "solution" was to to the laser surgery on the uvula which did have a profound effect on the snoring, which was the symptom that got me in there. Fast forward a few years and I am suffering from acute fatigue. My GP was trying numerous things and after looking over the history ordered the sleep study that uncovered the now "severe" apnea. It turns out that it is pretty widely known that the uvula laser surgery just masks a symptom rather than fixing the problem.

So now when they start talking about the treatment being CPAP, I figure I should get educated about it. I found out pretty quickly (not just here; in fact this was before I found this site) that APAP generally makes a lot more sense for most patients. I discussed this with my doctor and he agreed. He wrote up an order for auto PAP titration. The DME provided me with a machine set wide open and then generated a report that showed what pressures had been used. The DME told me I would probably be getting a fixed pressure machine at the end of the trial because an APAP required a letter of medical necessity from the doctor and that the insurance people were harder to deal with to get one. No one has ever told me that there was a good medical reason for using a fixed pressure machine. So I got my doctor to order APAP with a range to match what the study showed. He also asked that I get reports after a few weeks to make sure things were working well.

My DME called me after receiving the permanent machine perscription. They say I can just hang on the machine I have for now. I ask about the pressures and what I am perscribed. They say that they are fine (not true - I was prescribed 6-14 and it was set to 4-20). I asked about the card (they still have that from producing earlier report). They tell me that I can just get it when I need to report. It turns out that isn't true either. It records no data without the card, so if I don't get it back ASAP I will not be recording the data the doctor wants to see. Without the additional information I have gathered, I would not know that I was being mislead. Yes, I learned how to set my machine using the "secret" menu here and I used that information to set it to the pressures prescribed by my doctor.

My doctor has other patients on CPAP and while he agrees that APAP makes more sense, he isn't a proactive patient advocate. If they don't want to rock the boat with the DME and insurance company, he lets them get the outdated technology. I don't think he is a bad doctor; he just has a lot of patients and CPAP does work.

The only reason I am using my DME is because of insurance - I haven't paid them nickel one. Without forums like this, I would be at their mercy as far as information about the machines goes. And their track record on accuracy is not very good.