CPAPtalk.com

bear1mdr wrote:WearyOne, No, I don't have any objections to the end-user having the software for informational purposes only. BUT in the words of someone who was much wiser than I "A little bit of knowledge is a dangerous thing". I can almost hear the moans and groans from some readers about this comment from here. Truth be told, this software was never intended to be used as the one and only tool for adjusting your pressure setting

Bear,

Personally, I do hope you'll stay and get to know us better and let us get to know you better. Most of us (including you) don't react well when we feel attacked. I felt your attack on Flying Norseman to be uncalled for - all the exchanges we've had have been very pleasant and informative. I do realize that you have been attacked by some.

As far as adjusting pressures, I don't think most change pressures based solely on the software. For example, I've typically made 1/2 or 1 pt change and then waited about 2 weeks to see the results. I also make a note every day about how I slept and how I'm feeling. I noticed since my last pressure change that my energy levels are most noticeably improved (and I'm still within the range my sleepdoc ok'd). Tonight I checked my AHI for the first time (along with leaks, pressures, etc) and found that my AHI had dropped noticeably.

The most important part to me is that I feel better - and it's substantial. Isn't that the goal for all of us?

Mindy

mindy wrote:Bear,

I felt your attack on Flying Norseman to be uncalled for - all the exchanges we've had have been very pleasant and informative. I do realize that you have been attacked by some.

Do you agree with what Flying_Norseman said?

Flying_Norseman wrote:I think you still need more work on forum etiquette because you still come off sounding like a dick.

I guess implying that I am unstable by proxy is no big deal right?

Slinky wrote:Frankly, I see NOTHING that Bear has said that warrants some of the STRONG and insulting responses he has received. So he ruffled some feathers when he first posted. There are a couple here who have responded so tastelessly that they are an embarrassment to the forum. There is no need for such vehemence nor has it in anyway been warranted.

Would you all quit focusing on what the snipers and smart asses are saying and actually try to accomplish some thoughful discussion here?

What is the point, Split, of bringing that up?

Focusing on the negative will not get you anywhere POSITIVE.

I would like to see some solutions and answers to questions instead of a bunch of pointless hot air?

Come on!

Jen

Great Post

BTW I just went down to my local DME for a chinstrap

The RT came out with two closed bags and said pick one

Thats it !

The one I picked was for an Adams circuit interface. I use a Nasal Aire II

The other was worse

I will stick to the poligrip I know of because of the wonderful people on this board who share their experience others

God bless them and this forum

Sleepdeprived






[quote="Slinky"]Awwe, come on, folks! Obviously Bear1mdr is a "victim" of his/her own training and environment w/other sleep professionals and RTs. He/she offered some advice he/she truly believes in. If we haven't already chased him/her away, this just may be his/her chance to get an education from the "real" world of a good share of the OSA CPAP therapy patients. Have a little compassion and maybe WE can help to further his/her education on what the real patient world of CPAP therapy is like. We might actually be able to help his/her patients thru his/her better understanding.

socknitster wrote:Would you all quit focusing on what the snipers and smart asses are saying and actually try to accomplish some thoughful discussion here?

What is the point, Split, of bringing that up?

Focusing on the negative will not get you anywhere POSITIVE.

I would like to see some solutions and answers to questions instead of a bunch of pointless hot air?

Come on!

Jen

I was simply pointing out that it hasn't been all one way traffic in terms of "but he said/she said..." Hopefully BOTH sides will realise this AND then move on.

Well, bear1mdr, welcome to the forum! I don't usually engage in this sort of thing, and originally figured you for a troll, but you have hung in there, and so I figured it was worth replying.

Like jskinner, I value input from professionals, even if their opinions differ from my own. I hope you stick around, and I hope you will read some posts here. There may be some xPAP-user-generated information here that was not available in your training. I once knew a person who mistook 20 years experience with the same year's experience 20 times over, but hopefully you are not like him.

Personally, I know for certain that there is a wealth of useful information on this forum. I haven't adjusted my pressure in months, because the people here graciously and expertly helped me find my correct pressures, and I am most grateful to them. My six month AHI is 0.6, down from a titration of 89. My oximeter and my subjective experience of feeling much better seem to verify the results from the software. My optimal pressures happen to be fairly consistent with my titration pressure, but I trust the gradual verification of my optimal pressure using the software over a single night's titration in the sleep lab. I'm glad to have had both.

As far as taping goes, I have been a full face mask guy for the past year, but because of weight loss (or whatever), I have recently had better luck with the Activa than the other dozen masks I have. I've been surprised that I no longer seem to mouth breathe. However, I think I'll verify that by taping tonight, because I am convinced from this forum that it's as safe as anything else in life. I never have vomited in my sleep, or heard of anyone who was not severely drugged or ill who did so, there is an anti-asphyxiation valve in all my masks, and I use a UPS.

So keep coming back, we may learn from you, and vice versa.

split_city wrote:

mindy wrote:Bear,

I felt your attack on Flying Norseman to be uncalled for - all the exchanges we've had have been very pleasant and informative. I do realize that you have been attacked by some.

Do you agree with what Flying_Norseman said?

Flying_Norseman wrote:I think you still need more work on forum etiquette because you still come off sounding like a dick.

Aw, c'mon Split,

As I recall you had a bit of a rough start here, too

Although I hadn't seen his message in this awfully long thread, I've not seen him do flames .... I can only speak to the interactions I've had with him and others on this forum.

The more people throw stones, the more they get stones lobbed back ... and it doesn't make *anyone* look good. It also takes away from the real purpose of this forum. To probably misquote the old saying "A pox on both of their houses"!

None of us likes to be the one who *doesn't* have the last word. So, this will most likely be my last post on this thread!

Mindy

mindy wrote:

split_city wrote:

mindy wrote:Bear,

I felt your attack on Flying Norseman to be uncalled for - all the exchanges we've had have been very pleasant and informative. I do realize that you have been attacked by some.

Do you agree with what Flying_Norseman said?

Flying_Norseman wrote:I think you still need more work on forum etiquette because you still come off sounding like a dick.

Aw, c'mon Split,

As I recall you had a bit of a rough start here, too

I have tried to erase that from my mind

mindy wrote: Although I hadn't seen his message in this awfully long thread, I've not seen him do flames .... I can only speak to the interactions I've had with him and others on this forum.

The more people throw stones, the more they get stones lobbed back ... and it doesn't make *anyone* look good. It also takes away from the real purpose of this forum. To probably misquote the old saying "A pox on both of their houses"!

None of us likes to be the one who *doesn't* have the last word. So, this will most likely be my last post on this thread!

Mindy

Agreed.

Oh well, sometimes it's good to have a bit of a flame war every now and then...as long as it doesn't turn into a wildfire!

I agree Jen that we should all be more positive. However, I haven't seen any positive responses from Bear to earnest questions from some very nice people. I think he came here to stir up trouble and succeeded in doing so. What I don't understand is why so many people are taking his claim of being an expert at face value. So far all I have seen is him making assertions without backing them up and that he has sold some CPAP machines on Ebay.

Contrast that with the majority of very nice and supportive people here who don't claim to be experts, but have provided some very useful information. Most of them don't lash out when others here disagree with them and threaten to leave. Those are the kind of folks that I value and hope to learn more from in the coming months.

FN,

Thanks. I resemble those remarks.

That is why I said, can't we just talk about the issues he brought up, rather than trying to keep track of who called who what on second base?

I don't care who called him a bleeepity bleep bleep. I want him to answer my very thoughtful questions!

But since he can't really solve my problems:

1. No medicos to monitor my progress forcing me to do so MYSELF(my ent is great, but he isn't a sleep specialist and LIKES me taking a roll in my own care.)

2. No alternative to TAPING except chucking my machine (which I'm not going to do).

He focuses on who called who a Whoozit. Because that is a damn lot easier.

Jen

All,


Just got done reading through this quite interesting thread, and have to say, even though things started out rocky, this thread has generally became good one. Have to say Bear1mdr, yes, the lab tests will alway be more comprehensive (they got the better, mucho more expensive equipment, after all), but the end user has to be able to monitor, and using the edumucation we get from the more experienced, we may or may not adjust out equipment. It's like a diabetic taking their their blood sugar reading regularly, but not being able to read what the levels are. That data can only be read by a doctor, or other trained person who most likely is too busy to go over the data fully, or in some cases through professional egotism or lack of proper training on their part, may miss something.

As a trained meteorologist (who by the way has learned a whole lot more since I got out of college), who still undergoes regular training on a wide range of forecasting types, one thing that has been proven over the years is that a concensus forecast will consistently be a better forecast; the more opinions the better. I know what it is like have a LOT of data available, and have learned to glean through that data, to come up with the best solution. Sometimes, some opinions deviate significantly from the average, and sometimes they are right, but overall, the balanced concensus will give the better results. I have come here for that concensus, and have picked up a lot of refreshingly creative ideas to solve a bunch of problems that crop up. They may not be pretty, but they work. If some of those solutions required a calculated and informed adjustment of the data, so be it. All that is asked is that we be given the right/responsibility/ability to do such.

Steve

Bear

I am one of the guilty OMG who have tinkered around with my pressure just a little bit, went back to my titrated pressure when i figured out i felt better at that pressure. There is so much mystery and secrecy involved with the sleep professionals which i don't quite understand. I was told like many others here just put it on, turn it on and make sure you use it at least four hours per night. A few cleaning instructions later sent on my way and told come back in six months, my RT didn't even measure my Ultra Mirage FF he just held it up to my face (large size) and said this one should be o.k. whats up with that. If it had not been for stumbling across this site while doing some research on my newly aquired OSA diagnosis, (right after my sleep study) i would still be in the dark. This is why so many fail with cpap treatment, no support from sleep Docs and RT's. If everyone was told the truth from the start and told about software from the start and given the opportunity to purchase the software with their machine. Whats wrong with being pro-active in ones treatment and even though the software may not be as accurate etc. as the sleep labs i for one need to know and be able to monitor the results. It is the fault of the sleep professionals that people have to resort to tinkering with there pressures etc. why don't they take the mystery out of it and try being honest, and stop ripping folks off for cheap machines and give us what we need to succeed in this treatment to start with.

Dale

bear1mdr wrote:jskinner, there's nothing wrong with changing your own pressure as long as the change is based on reliable data and an informed understanding.

Agreed.

bear1mdr wrote:The only problem I see is that most of the members of this board are adjusting their pressure based on information from a software program that was never meant to be used that way.

So what exactly is the software supposed to be used for then? It seems as if you don't trust the data from CPAP machines? Am I miss understanding? Does that also mean that you don't trust using Auto CPAPs? APAPs of course change the pressure automatically based on the same events shown in the software.

Again I agree a sleep study is better but for ongoing monitoring I still don't understand why you don't think CPAP data is useful or even reliable?

I feel like I am missing what you are saying, what exactly is it about the data coming out of the CPAP don't you like or trust?

split_city wrote:Wow, and I thought my introduction to these boards was TOUGH!

Dude what do you expect? It's like a stranger going into a small town bar and shouting out "OK you fools are drinking this stuff all wrong ... if you want a real beer belly you gotta drink like this!"

But hey, I hope both of you stick around cuz everyone learns from the forum threads be they controversial or plain boring.