Stop self adjusting your pressure.

bear1mdr · Post by **bear1mdr** » Tue Nov 06, 2007 4:13 pm

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

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.

roster · Post by **roster** » Tue Nov 06, 2007 4:15 pm

bear1mdr wrote:......

Flying_Norseman, I have already received several private messages from other members on this board about you and a few others and you should know that your comments shall be completely ignored by me, you’re just to smart for me and I don't want to suffer your saber sharp wit.

Ah, the old "I have PMs that prove you are wrong" tactic. Not a good approach for someone who wants to be taken as serious and mature.

bear1mdr · Post by **bear1mdr** » Tue Nov 06, 2007 4:21 pm

I didn't say the messages proved he was wrong, they simply warned me that he is unstable and should be avoided at all cost.

WearyOne · Post by **WearyOne** » Tue Nov 06, 2007 4:23 pm

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, I have given examples of why this is in other post but they seem to have been selectively ignored by most.

Thanks for responding. You're right, a little bit of knowledge by itself can be dangerous, but--and this is not a moan or groan--everyone has to start with a little bit of knowledge and move on up. When I was first diagnosed with each of my different health issues, I didn't have a clue about any of them. Through research and educating myself, I now have much more than just a little bit of knowledge. At times, even educating my physician. (Fortunately, I have good physicians who welcome my input. If I didn't, I'd change physicians if at all possible.)

Just as an aside in how important it is to educate yourself on your own health, I picked up a prescription one time and the pills were a different color. Same shape, different color. If I hadn't educated myself, I would have taken something that could have very well killed me, or at the very least, made me ill. The pill wasn't anywhere close to what it was supposed to be, yet the prescription label on the bottle was correct.

Pam

roster · Post by **roster** » Tue Nov 06, 2007 4:35 pm

bear1mdr wrote:I didn't say the messages proved he was wrong, they simply warned me that he is unstable and should be avoided at all cost.

Oh sorry.

You are using the old "I have PMs that warn me that he is unstable and should be avoided at all costs" tactic.

My mistake!

jennmary · Post by **jennmary** » Tue Nov 06, 2007 4:56 pm

[quote="bear1mdr"]So the question still remaines, why is this kind of software not intended for the end-user?

This is fun, anyone else care to venture a guess?

sleepycarol · Post by **sleepycarol** » Tue Nov 06, 2007 4:57 pm

I think it is important for both sides to take a deep breathe and count to 10. There is so much positive information on this board and people are so willing to take the time to listen and give feedback when no one else will -- this is important at least to me!!

I think you should stick around bear1mdr with an open mind. Read the posts and take what you like and leave the rest. When you can make a difference without jumping the gun feel free to give good solid advice.

split_city · Post by **split_city** » Tue Nov 06, 2007 5:11 pm

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

Daffney_Gillfin · Post by **Daffney_Gillfin** » Tue Nov 06, 2007 5:11 pm

rooster wrote:
You are using the old "I have PMs that warn me that he is unstable and should be avoided at all costs" tactic.

Is that equivalent to "The Lurkers Support Me in Email"?
http://www.lspace.org/fandom/filks/genf ... email.html

Slinky · Post by **Slinky** » Tue Nov 06, 2007 5:14 pm

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.

jennmary · Post by **jennmary** » Tue Nov 06, 2007 5:18 pm

I have still not seen an answer to the mouth taping alternative question that was asked not once, not twice, but three times by the same poster. I guess that says something.

I also think it is really really stupid and juvenile to come out calling another member "unstable". I dont care how many supposed PMs you have gotten. In case you have missed some of my other posts....I am sure plenty of people here might say the same thing about me. But most people have enough tact not to come out and tell me that all the other kids are talking behind my back.

If you are really going to start your first day here by ignoring half the membership and closing your eyes to any question or answer that you dont agree with then maybe you SHOULD take your ball and go home.

split_city · Post by **split_city** » Tue Nov 06, 2007 5:20 pm

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.

Agreed. While I believe that he could have introduced himself in a better way, two wrongs don't make a right. He has done more than enough to rectify the situation. We live and learn....

socknitster · Post by **socknitster** » Tue Nov 06, 2007 5:28 pm

Typing is not the same as speaking. We don't "know" Bear's tone of voice and we can't see his facial expressions. We don't know for sure if he is being sarcastic or preachy. Perhaps he is nervous and freaked out instead.

I beleive that you genuinely believe what you are saying. I also believe that you have a good heart and that you help people. Your compliance statistics are NOTHING TO SNEEZE AT.

But one thing you are forgetting that is SO VERY IMPORTANT is that most of us DO NOT HAVE DME'S LIKE YOU. Most of us have either busy doctors who aren't current or expert in sleep medicine OR a sleep doctor who could care less about us and just want our money. Then there are all the DME stories, which you yourself already contributed to--you know what the industry is like.

Case in point: my sleep doctor saw me last week, for a follow up. I called ahead to ask if it was really necessary and they said it was. I was there for three minutes and he charged my insurance $80 and I never got to ask ONE QUESTION, even though I plainly had a list of them in my hand. He told me I need another sleep study and walked out. I'm doing fine. I feel great. My machine reports my ahi less than 1 most nights and my last PSG was only 5 MONTHS AGO!

What is a patient to do? Just sit on our hands and hope for the best? That isn't the American spirit. Since the days when people started using herbs for different ailments to see if they would help, we have been forced to do our best to take care of ourselves.

I think it is safe to say that if we felt worse after changing our pressure, we would go back to the prescription and/or keep looking for other answers.

There is a gentleman here who had the wrong pressure for 20 months. Trusted his sleep study was right and had a non-data compatible machine. What do you say to this person? If you aren't the DME in his town, what is he to do?

Give up? Not an option.

You still haven't given me a solution to the taping problem. I'm waiting for your Professional Education and Experience to show me the way.

You keep waving your finger and telling us we are wrong,

BUT WHAT IS THE SOLUTION?

I don't see any solutions coming from your fingers, only recriminations and sarcasm.

THIS FORUM IS ABOUT SOLUTIONS. Do you have any to offer?

Jen

bdp522 · Post by **bdp522** » Tue Nov 06, 2007 5:37 pm

I don't understand why we shouldn't use the software info to change pressures. That is what alot of the RTs and MDs use.
I was started at a pressure of 7 and with the help of some members here and the software moved mine to 9.5. My Md said he couldn't change it with out the RTs approval and the RT said he couldn't recommend any other pressure with out another sleep study. My insurance will pay for 1 every 2 years. So I should wait 2 years to get adequate treatment?
I also tape everynight. It's the only way I've found to stop the mouth leaks. Chinstraps allow lip flutter, and FF masks cause rashes due to allergies. Tape was a last resort but it does work well for me.
Bottom line...I feel great, my health is better than ever, my AHI is usually below 0.5, many nights I get 0.0, and my doctor said I'm his most successful xpap patient!

Brenda

socknitster · Post by **socknitster** » Tue Nov 06, 2007 5:43 pm

Dittos, Brenda.

My sleep doc is a crock, but my ENT who actually cares about me enough to follow my progress says he wishes all his cpap patients were like me.

If some doctors don't have a problem with it, why should Bear?

jen