Stop self adjusting your pressure.

In one of Rested Gal's earlier posts (in this thread), she used a fundamentally important word...."choice".

As the Internet grows more important by the day, people are becoming better informed.....and they are better able to make the necessary choices in their lives.

In the past, there was a big gap in the amount of knowledge (on a particular subject) between the "professionals" and the so-called "patients".
That gap is swiftly narrowing because of what we learn on this forum....and all the other content we have access to (thanks to the Internet).

As the Internet Revolution progresses, there's going to be many howls of protest from the so-called "professionals" as the need for their service declines.....and the "plink" of pellets in their food bowls diminish.

This forum is populated by a bunch of very sharp CPAP users......who are on the leading edge of the information revolution.

"Playing games" with this bunch is risky.

Gerald

Bear, your posts still sound like you find it more important to be right than to be effective. All the knowledge you have gained is of no use to anyone if you fail to share it appropriately.

It may be "fun" for you to treat the members of this board as if they were in third grade, but it shows an incredible lack of respect for their intelligence and ability.

The distinguishing characteristic of this board is the high level of knowledge freely given. Guessing games are not conducive to the maintenance of that level of information exchange.

Especially when the "information" that you are sharing is not that difficult to find elsewhere on this forum.

Susan

You can add me to the list of people who had a wrong pressure prescribed during a PSG. I was prescribed at 15 and a given a cheap CPAP machine. Dreadful. My doctor (when I finally saw him 6 weeks later) ordered a month on an auto-pap because he said it would give better info since it would be for more than 1 night in a lab and I would be in familiar, comfortable surroundings.

The auto showed my pressure needs to be considerably lower.

Fast forward a year or so to my second PSG. My auto Bi-Pap had demonstrated that my 90% was IPAP 12, and EPEP 8. The new titration matched exactly. When the pressure went up to 13, the tech could tell it was waking me up. The doctor recommended that I change the auto to straight Bi-PAP to be sure the adjusting pressures were not waking me. Actually in the weeks since I did that, I can't tell any difference in how I sleep. I may go back to auto since the pressures I had set frequently resulted in nights at 11 / 7.

Different, but not so drastically as other people here.

Big point is the auto found what I needed on its own, just like it should, as shown in the second titration.

By the way, the first time I had a PSG I took Ambien CR, but not the second time. I am convinced that made a difference.

Catnapper

WearyOne wrote: Still need to know what alternative there is to mouth-taping, as chin straps only keep the chin from falling down, not the lips from parting. (Maybe you answered this? This thread is generating so many posts, I may have missed it!)

bear,

Respectfully, I'm still waiting for an answer here. I'll give the benefit of the doubt that maybe it was missed because of all the posts on here, but I know you've been on the forum since I posted this question (you posted a response since then to a thread I started yesterday).

If you can't offer a helpful alternative, please don't fuss about people doing it. We're trying everything we can to have the best treatment, and so far, nothing has been suggested as an working alternative. (Again, I don't tape because it's not for me, but I understand why others do.)

Pam

Geeeeeez, maybe you guys should learn to lighten up a little bit and have some fun. Why can't an open exchange of ideas and knowledge be FUN? I started out on a serious note and got slammed for being too preachy. I started over on a more fun loving approach and now you want to slam me for that too. I would also like to point out that I did not call any of you "idiots" nor did I "treat the members of this board as if they were in third grade", if that's the way you read it then you read it wrong.

Everyone likes to be right but to say that it's "more important (for me) to be right than to be effective" is untrue. If you think I posted on this board to feel superior or to stroke my own ego then just ignore me.

So far, you and a few of your fellow members have insulted me, my wife, my company, my education, my level of understanding, my attitude, my motives, and my honesty. Have I responded with the same in return? No. I have tried to overlook your unwarranted attacks and remain up-beat and friendly.

I see patients everyday that are grumpy and rude because they are not getting the sleep they need so it’s easy for me to overlook their insults because I understand where they’re coming from. What I don’t understand is why some members of this board seem to be going out of their way to attack and insult someone who is only trying to help them. Do you think I have a hidden agenda here? Is it possible that you just automatically attack anyone whose opinion differs from your own?

Here’s an idea, everyone who wants me to shut up and go away just say so and if more people want me to do that than those who want me to continue to post on this board then that’s what I’ll do. I don’t want to waste your time or mine if you don’t think I have anything useful to add to your discussions.

bear1mdr, i think it's great if you stay. Learning and expanding one's boundaries is always a good thing.

A good debate is also interesting. I can see why, however, there has been a lot of backlash to your comments. I don't know what to suggest, except that I realize that you want to share your experience, but the poeple on this forum ALSO want to share THEIR experiences with you, without being told that what they're doing is bad or harmful. Well maybe what they're doing is really harmful, but then I would really like to see some evidence, or convincing arguments. (And if what we're doing is so bad then why do many of our doctor's approve?). Until then, it might be wise to listen first, and pick up the vibe, and find out why certain people are doing what they're doing, before offering your opinion. Maybe that's unfair to you, could be, i'm not taking sides here. But in any case, I do hope you stay and that we can learn from you as much as you can learn from us!

(I for one thought your 'guessing' posts were quite funny. It's all about context i guess! )

WearyOne wrote:

WearyOne wrote: Still need to know what alternative there is to mouth-taping, as chin straps only keep the chin from falling down, not the lips from parting. (Maybe you answered this? This thread is generating so many posts, I may have missed it!)

bear,

Respectfully, I'm still waiting for an answer here. I'll give the benefit of the doubt that maybe it was missed because of all the posts on here, but I know you've been on the forum since I posted this question (you posted a response since then to a thread I started yesterday).

If you can't offer a helpful alternative, please don't fuss about people doing it. We're trying everything we can to have the best treatment, and so far, nothing has been suggested as an working alternative. (Again, I don't tape because it's not for me, but I understand why others do.)

Pam

bear1mdr wrote: <snip> Here’s an idea, everyone who wants me to shut up and go away just say so and if more people want me to do that than those who want me to continue to post on this board then that’s what I’ll do. I don’t want to waste your time or mine if you don’t think I have anything useful to add to your discussions.

Bear, you still haven't offered any useful information regarding my question, and I haven't been rude or insulted you.

If you don't have a working alternative, it would be helpful for you to say so, and then we could move on and check this item off the list of discussion. I really feel like you're avoiding my honest question. If there was a working alternative to taping, I know I'd try it because I don't tape (my choice, but I don't knock it for others) and chin straps don't help keep the lips tightly together. It would give me a lot of other options for masks.

As far as whether you continue to post on this board, that is your truly your decision.

Thanks---

Pam

Just curious--and maybe this would be a better question for the other thread--do you have a problem with end-users having the software for information purposes only? If so, why? And, if in your opinion that is bad, why is there now Encore Viewer?

I'm one of those that rarely changes my pressure, but when I have, I did so with my doctors knowledge and approval. Do you think that is wrong? And I did so within the range from the titration study.

bear, I posed some questions to you on my thread, in response to your post there. (viewtopic/t25744/Cant-Quit-Obsessing-Ab ... ence.html.)

I decided to post them here too--see above--to make sure you see them. It's probably better to have them in this thread anyway.

Thanks---

Pam

I would need to know exactly what kind of problems you (or anyone in particular) are or have been having and what you have already tried to fix the problem(s). As I'm sure you already know there isn't one fix to solve every problem for everyone. We all have different problems and unfortunately not every problem has a solution.

As for continuing to post or not, I understand I CAN continue but I don't WANT to continue if the majority of the members of this board don't want to read what I post or don't find my post useful.

bear1mdr,

Can you guess why your are having so many problems here and why you are reduced to basically saying you are going to take your ball and go home?

bear1mdr wrote:everyone who wants me to shut up and go away just say so and if more people want me to do that than those who want me to continue to post on this board then that’s what I’ll do. I don’t want to waste your time or mine if you don’t think I have anything useful to add to your discussions.

I for one think that you should stay (I know its been a bumpy ride). I think both sides need to take a deep breath and listen and learn.

I would like to find out your answer to the question I asked: what exactly is dangerous about changing one own pressure? I'm not trying to be rude just trying to understand. A number of peer reviewed papers have been written on the subject saying that it works quite well even without using software, just purely on how one feels. Most of here do with based on data which is even better.

I also agree that a polysomnygram is better than CPAP data. However I think there is value in the CPAP data and its _tons_ better than nothing. For example I didn't make it into deep sleep during my titration and only got set to 6cm. I suffered for 2 months still having some events and having leaks that I didn't realize. Finally after unscussessfully getting help from my Dr and DME I got a data capable machine and could immediately see that I was still having events and that I had a leak problem.

I even ended up writing some software that could make the process of monitoring ones progress a bit easier. I found the data coming from the machine correlated well to how I felt (Total time in apean for example) I can't understand how no data is better than some data?

For the record I really wish there was a simple way to record sleep stages at home every night. I hope someday we can.

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.

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.

bear1mdr wrote:I don't think you'll see many more RTs posting on this site with replies like "Preach your RT crap somewhere else." But good luck to you all and try to be more open to others opinions especially when it comes from someone with a lot of personal experience.

"Experience" does not automatically equal expertise. My 21 years in the medical field has taught me nothing if it has not taught me how much I don't know and the importance of always making sure that what I do know is still true. Lots of medical professionals never learn that lesson. They're usually the one's leaning on the dates on their resume for credibility in defending their often ill-informed opinions.

bear1mdr wrote: I would need to know exactly what kind of problems you (or anyone in particular) are or have been having and what you have already tried to fix the problem(s). As I'm sure you already know there isn't one fix to solve every problem for everyone. We all have different problems and unfortunately not every problem has a solution.

As for continuing to post or not, I understand I CAN continue but I don't WANT to continue if the majority of the members of this board don't want to read what I post or don't find my post useful.

Thanks, bear.

My exact, specific problem is that I open my mouth when wearing a nasal mask, and a chin strap doesn't work because my lips still slip open and air comes out. My understanding from your answer is that you don't have an alternative that will stop the mouth breathing and allow me to wear a nasal mask. Is that the correct understanding?

I realize not all problems have solutions, much less good ones, but if there is no good alternative here, taping seems to be the only answer for those whose choice is either to use tape or don't use xpap. Many people are severely claustrophobic and/or get bad sores on their noses from full-face masks, or they can't get them to seal well enough to provide effective therapy. (Won't a person wake up in the event the machine stops because their brain isn't getting enough oxygen. just like if you were having an event?)

Sometimes the solutions people have to use aren't great, but they're the only answers at the current time.

Thanks again.

Pam

I highly doubt that you have received any pms about me, but if that rationalization is what you need to make yourself feel better, then go for it. Ignore away.

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.