Stop self adjusting your pressure.

I also had to rely on the VA for a sleep study and machine. Took 2 years for me too. If not for this forum, I would be in the dark and still suffering. I learned how to take charge of my therapy from the kind folks on this forum. The collective knowledge here is born of shared suffering and experience. The expertise gained thereby trumps most "professional" expertise. I have found most health care providers I speak to about by OSA to be woefully ignorant.

I am very thankful I found this forum. I would never have learned about mouth taping and so much more. (By the way, we had a power outage while I was asleep with mouth taped and I woke up within seconds and took off the tape).

Generalizations made about the advice and people on this forum are unwarranted and unfair.

Next think you know, he will be telling us not to use pur-sleep.

Well after trying to read all this stuff and barely keeping up with the page increases (So I'm a slow reader...), I'd say there are a few opinions here......A few buttons were pushed today....(Including mine, I just wanted to read all the posts before I "went off".).....

Bear -- If you want to take your ball and go home, so be it. I think that would be a real shame, because I think you have some valuable information to provide to this group -- you just need to work on your presentation. You've already proven to us (at least to me) you have a thick skin. If you didn't, you'd have been gone 8 pages ago.....

You think you've been raked over the coals here???? Talk to split_city...... You've had it fairly easy!!!!

As you may have figured out by now, we folks here are passionate about our treatment. We're frustrated over the lack of knowledge in the medical community with regard to our affliction. Read some of the posts done by people that were blown off by doctors -- "Depression", "Wacko", "Oh it's just one of those woman things".....or worse and for years. How many of us are a lot worse off health wise, due to what we see as incompetence in the medical community??
I am very fortunate in that I have a very good doctor (who, by the way, strongly approves of my positive control over my treatment - and that includes pressure changes. I provide her with my data, we discuss the options and come to an agreeable adjustment). I also have a fairly decent DME (Once they were trained ) -- but if you read this forum for any length of time you'll note, that's the exception, where it should be the rule!!!!
You've already expressed your disdain for the typical DME.

Because of those issues, over time, we have learned as much as possible about our affliction -- and all data does not come from this forum. Read some of the posts from Rested Gal, Snoredog, socknitster, SAG (StillAnotherGuest), or others that have links to very good studies. Check out the yellow light bulb at the top of these pages (Our collective wisdom)...
Data. Data. Data.

You have found that we listen!!!! If we didn't we'd have blown you off without a second thought. At least you had the guts to log in and identify yourself with your opinion, unlike some of the "hit and run" guests.....Those trolls that stir the pot, clean their oar and run away.....

With all your education and experience I would venture to guess there are people who post here that have forgotten more about OSA than you'll ever learn (I'm not one of them!!! Yet.....).

Get down off your self righteous pedestal, get real, and pass along your information. We're all ears when it's presented without judgment. Like Joe Friday used to say, "Just the facts, ma'am, Just the facts"......
We're intelligent adults (well...some of us anyway ). Just like any family, we're not always going to agree with you -- we certainly don't agree with each other all the time either, so toss your data into the ring and let us mull it over.....

Respect is not just given out. It's earned.....The way this started out, you've got a bit of a hill to climb, but it's far from insurmountable. Join the family. Give us your best shot -- learn from us as we hope to learn from you!!!

take care
cheers
goose

jskinner wrote: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?

That is another q? he has never answered.

If the output from Encore is so inaccurate - I would have to ask why is it used? Why would it be ok for the DME & doc but not for the the avg. user?

I can honestly say that I have never learned from anyone who always agrees with me. And now I can honestly say I have yet to learn anything from the bear1(m-dr).

He has posed many q?'s & has answered none, absolutely none. So where is the value added?

Please, this is not an attack, the above are facts that were posted and not made up by me. People - don't hate me for pointing out the obvious.

My opinion is this is someone with a BIG ego who for some unknown reason thinks he can control people he has never met, has no idea what their issues are but wants to (for no good reason) try to control their behavior via remote internet?

I think he figured out he made a mistake and is now trying to back peddle. It is not good business to get everyone all worked up while you are trying to sell them something (on the same forum no less). Would YOU buy a CPAP machine from someone like this? Let's hope s/he is better at CPAP than business. But more likely the used car sales mentality, once they get your money they forget who you are.

Your machine is worth what YOU are willing to pay for it, not a penny more. And to answer the mystical software question, (my crystal ball was returned with a crack in it) but I will give it another crack.

So the question was:
Keep in mind that PAP software is not intended for end-users and it's not because they think patients are a bunch of idiots who could not possibly understand how to read the data. Anyone want to venture a guess as to why? So the guessing game begins.

He denies it has to do with the feeling that the average user will misunderstand what the charts & graphs mean. How they could harm themselves is beyond me. Well blow me down. But users lack the formal training to understand what is presented. Certainly there is a learning curve that the doc or DME would have to work thru too. Back to a little knowledge is dangerous - esp. on this curve.

However, it appears that a great many users have figured how to read & interpret their personal results w/o having to wait months & pay someone else to do it.

And I am absolutely positive that RT & med schools do NOT require ANY Encore or CPAP training before graduation. In fact, I was told CPAP wasn't even mention in school. So let them learn on YOU?

What he failed to mention is how the DME's make money on the rental to use the card & auto. He will deny that is it too. I just hope he comes up with something believable. That is if decides to share "HIS" BIG secret.

********************************************
Opinions express by me on this board are not to be considered as medical advice and you should always consult your doctor about any medical conditions or symptoms you may be experiencing.
********************************************
Yet he continues to tell people what they should & should not do?

Well after reading his 1st post, I immediately stopped changing my pressure and have considered adding him to my life insurance policy because of this timely advice to save my life. oh and the genuine concern.

How many others are doing the same?

When I get a prescription (from my doc) for medicine, I have a choice where I get it filled. Is CPAP or should it be ANY different? When I take it home, I have instructions on the bottle. In my case I never even got that with CPAP. So if the instructions say to take 1 pill 3 times/day - who is there to stop me if I decided to take more or less or not at all? And should someone be there? Get the point? Why do YOU think CPAP is different? Should it be? Care to venture guess? Ain't this is fun!!!!

I have read this entire thread and I have to comment on a few things. Bear1-- I have to agree with you that when I first found thid forum I was shocked! I thought that all these people were nuts for changing their own pressures and taping their mouths closed. But take time and talk to them. You will see that most do not carelessly change their pressure without substatiating the change. Most do not tape their mouth for no reason. I have sent a lot of patients here and have found some ideas to help patients that cannot do the internet. What you have to understand that the people on this forum have gone out of their way to find answers. They are not the run of the mill patients. (Because I have a liscense to protect I still won't tell people to tape their mouth shut at night, but I agree that I can see why people do) I give positive input when I have it to give, and try not to take offense to all the DME bashing that goes on. Stick around. You will learn a better patient perspective on CPAP and struggles.
Everyone else- I have said this before and I will repeat it here again. None of you on this forum are like 90 % of the patients that I see or that I bet Bear1 sees. Most could care less about being proactive in their treatment. I have had more than one patient say, " Forget about all the buttons, All I want to know how to do is turn it on." I also Please forgive Bear1 for coming across that way. You have to look at perspective.

Thanks for sharing both sides of the coin KansasRT. I am one of those relentless DME bashers but I do realize that there are some of you out there that know what is going on and do the best you can to make things work for patients.

Anonymous wrote:I have read this entire thread and I have to comment on a few things. Bear1-- I have to agree with you that when I first found thid forum I was shocked! I thought that all these people were nuts for changing their own pressures and taping their mouths closed. But take time and talk to them. You will see that most do not carelessly change their pressure without substatiating the change. Most do not tape their mouth for no reason. I have sent a lot of patients here and have found some ideas to help patients that cannot do the internet. What you have to understand that the people on this forum have gone out of their way to find answers. They are not the run of the mill patients. (Because I have a liscense to protect I still won't tell people to tape their mouth shut at night, but I agree that I can see why people do) I give positive input when I have it to give, and try not to take offense to all the DME bashing that goes on. Stick around. You will learn a better patient perspective on CPAP and struggles.
Everyone else- I have said this before and I will repeat it here again. None of you on this forum are like 90 % of the patients that I see or that I bet Bear1 sees. Most could care less about being proactive in their treatment. I have had more than one patient say, " Forget about all the buttons, All I want to know how to do is turn it on." I also Please forgive Bear1 for coming across that way. You have to look at perspective.

KansasRT.

Actually, being "nuts" helps us to get through this therapy. (I know, I took you out of context)

You know I've said this before, but, "Thanks!".....to you and the other professionals for putting on your hard hats and flak jackets and hanging out on this forum, too.
The DME bashing started some time before I came to the forum, but I think the ones that get "bashed" are the ones that deserve it.

Maybe the other 90% are the "sane" ones......

Best wishes,

Den

"kansasRT said: also Please forgive Bear1 for coming across that way. You have to look at perspective."

kansasRT
i surely appreciate your comments about the folks on these boards; i've read previous posts where you've tried to remind us that we are not run of the mill patients, and i think it's great that you can acknowledge that fact; i also know that you have, indeed, provided thoughtful and helpful answers to questions posted here

and therein lies the problem with bear1's posts...i think most of us have gotten over the extreme feather ruffling we indulged in about the heavy handed way that bear1 approached his concerns for our welfare...but now it seems that bear1 has either declined to answer specific questions about topics in which he claimed expert status, or is just choosing not to respond because his hand was slapped...

i would still like to read some of his ideas/answers if he's willing to speculate

It would certainly be worthwhile to have an RT or DME giving suggestions, but I don't think Bear has really given us any yet.
I do not sleep at the sleep center, they guessed at a pressure for me. The RT looked at it & gave me a range on my Auto Bipap, not the suggested one from the lab. The sleep center said 8/4 and come back.
Should I travel 2 1/2 hours, and drive back with very little sleep & then have the sleep Dr write on the report "needs to lose weight" when I'm 5'5" & weigh 110. Then they add "evaluate thyroid." Duh, my history tells them I'm on thyroid meds & it is checked every three months.
I have a spontaneous arousal almost 1 per minute, they did not give me any suggestions about that. On my own I gave up caffiene and stopped my allergy meds with a decongestant.
I mouth breathe, haven't found a full face to work & just started taping. Poligrip strips disappear, must eat them. Give me a suggestion. The tape & the masks don't do a thing for my sexy lingerie, so give suggestions, impart your knowledge.
I hate the tape. Since my boy friend discovered I stop breathing while asleep that makes him responsible for me for my entire life, (Chinese theory, save someone's life etc) so he'll have to rip off the tape if I get in trouble!

Gumby.....

I agree with your post.....and my compliments to you for "telling it like it is".

After reading all the posts in this thread, I think I may have come up with the answer to the puzzle. I believe it can be found in a very informative book I read a year or so back. The name of it is "The Sociopath Next Door" by Dr. Martha Stout. It's in paperback.....and is available at Amazon.

This book taught me a lot.......and gave me a very effective bunch of tools that help me spot sociopaths....so that I can stay out of their way. The book is a fairly quick read....and it's well worth the few bucks it costs. Highly recommended.

For those who want a quick understanding of sociopathic behavior, there's a brief (but very helpful) article available. Following is the link:

http://wiki.answers.com/Q/How_do_you_kn ... _sociopath

For the most part, this forum is made up of some of the nicest, most sincere people one could ask for. There are always a few strange ducks in any pond........but this group is the best.

I've been on the hose for a little more than a year....and this forum has made a huge difference in my quality of life. I wish to thank all who have helped me.

And...."yes".....I've changed the pressures on my machine...without asking permission. I plan to continue doing so..... when I think it's necessary.

Gerald

.

WOW, never saw so many wrassel a bear at the same time before. Best show since BoaterDave got kicked cf several other groups I frequent.
This is still the best group ever....

Bear - - Thanks muchly for your thoughtful post and follow-up. I believe that you are sincere and that you help lots of apneic patients, just like us.

This thread is a "must read" for anyone considering modifying their own prescribed therapeutic PAPian pressures, as both sides of the debate are represented with conviction.

That said, after 2 (generally good) years of Respironics C-FLEX, I just ordered an A-FLEX APAP with all of the data collection accessories, so I can ascertain my therapy success level, and to make prudent adjustments.

What I can't seem to find is a generally agreed upon protocol for determining PAP pressure errors and for making adjustments. (I suspect that just such a protocol exists within this site many times over, I can't seem to find it among the thousands of posts.) I'll be making a separate thread posing about this shortly.

Good show all, and a salute to Bear1 for the courage to withstand the stormy (but passionate and informative) replies.

Regards all - -

Tom

grybeard77 wrote:WOW, never saw so many wrassel a bear at the same time before

yep, sure a lot of bear wrestlers. Good one grybeard77, lol.

OK, if we're all giving our two cents.. (or is that two centimeters?)
First, welcome aboard bear. Should you stay or go? Whatever you'd prefer.
You've certainly landed with a splash, and a bit of a wake. (a-wake.. Haw Haw!!) I shouldn't be getting this much sleep.
If you're still interested in damage control, you might want to change the thread title (if possible ??) It does have a knack for raising the hair on a few necks.
Speaking only for myself, I have so far and will continue to manage my own care. Doing this so far has radically improved my health, and I will make no apologies for doing so. It's my health on the line, and I am responsible for taking care of me. My doctor is just not as devoted to caring for me as I am.
I come here to learn, and sometimes to teach. You are welcomed to participate in both.

I think it's nap time.

LyleHaze

Amen to all of that - whew!

I just wonder about a few things:

How can definitive test results be gotten from a study where I HAD to lie on my back, thus exacerbating my OSA?

Why did the RT send me home with an APAP for 6 weeks to determine what my pressure should be if APAPs and their software are so unreliable and unuseful when in fact the PSG was unable to give a reliable result?

How am I supposed to control mouth breathing, when a ff mask does not work for me, a chin strap was a disaster, and I've been only partially successful in training myself to nose breathe? Ok, I know, I know, that's been asked and (not) answered...

When I finally got a prescription from my sleep doc for an APAP machine, why in the world would the prescription have been written for 4-20 cm, when my fixed CPAP pressure for a year had been 14? Note, I immediately reset it to 10-18.

Why shouldn't my DME have even know what Aflex was when I asked for it? Give 'em credit, at least they sat down on the spot and Googled it.

And lastly, why is the only follow-up I have gotten from my DME in 15 months been a recording telling me to call an 800 number... which by the way, is another recording I can grunt "yes" or "no" to (If I hadn't already hung up?)

Just wondering... I don't guess there are answers to all of these points..

But, THANK GOD for this forum. I'm home!!