Stop self adjusting your pressure.

[bear1mdr]

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.

[sharon1965]

sharon1965, you don't find "Preach your RT crap somewhere else." to be rude?

oops, musta missed that

Anywho, welcome to the forum and good luck. You seem to be an RT who actually cares.....and we definitely have some here like that and can use bunches more!!

Kajun

kajun is one of the nicest folks on these boards, and he has a good point, we do need input from people who care...i think maybe your original post just raised a few hackles due to the tone which was at best condescending...sometimes the concept of seeking first to understand then to be understood is a good way to approach this kind of thing, especially when you're 'new in town'

thanks for your input though

[Birdseed]

It's my opinion that the majority of folks who use this site, do so because they care enough about their health to try and find the best treatment for their sleep apnea. The folks here know the potential dangers to their health if they don't comply, and you already know compliance is around 50%. (Lousy statistic) The folks here tend to become their own patient-advocate and this is absolutely essential in this day and age of medical care. Fortunately, my doctor accepts that we are now partners in my treatment and he knows I adjust my machine. Do you follow your own results?

[Perchancetodream]

Out of eleven responses, some quite detailed, you pick one rude sentence and decide to leave a forum based on it?

Clearly your message is not as important as you thought it was if so little will cause you to give up on it. It is a shame since, as others have said, we do have caring involved RTs who participate on this forum and we always welcome more input.

Of course, there is a difference between welcoming the input and agreeing with it.

Susan

[mommaw]

I don't get into they fray often but gotta weigh in here.

bearimdr,

I am glad you are not my RT! With an attitude like yours, many apnea sufferers will be bullied into thinking they have no control over their treatment. That is a bunch of poppy-cock! I am a 60 yr old grandmother and I am very active in my treatment. I ADJUST MY PRESSURE based on my softwear. MY sleep doctor, who has many years of higher EDUCATION, is fully aware of the fact that I have the software and have tweaked my numbers to get optimal AHI results. He has stated to me that he wishes more of his patients were active in their treatment. I have spoken to the local AWAKE chapter here and have just recently received another invitation from my doctors office to speak again.

After my PSG, I was given a bipap set at 18/14 based on the results of a very short sleep cycle at the sleep center. After finding this board, reading, reading, reading and talking to all the very knowledgeable members on this forum (actual cpap users), I ask my doctor for a trial apap for one month. He agreed, we found the PSG to be wrong and I am now on that apap with a setting of 8-12 with a 90% of 9-9.5. I just recently decided to set the apap to straight cpap to see if there was any difference in my numbers, there are none. I told my doctor what I was going to do and he said great, let me know how it works out. He did not shudder at the thought but more importantly supported me.

So don't come on this forum PREACHING, it is NOT WELCOME and will not be tolerated.

We are not a bunch of dummies blindly following an RT with "six years of higher education in respiratory care" who comes on this forum and starts preaching, without even a "hello, how are you". You could have at least said hello and let us welcome you to the board as we do to all newcomers.


Gilda

[LavenderMist]

bear1mdr...
Sorry that you received one comment that you considered rude. We do appreciate input from knowlegable medical professionals. I personally like to see the numbers so I can know if something is not going right with my treatment. I don't go willy nilly adjusting my pressure. My last titrated pressure during a PSG was 10. I was still having problems. My PCP agreed to autopap since it had only been one year since my last PSG. It is set from 8-15. It goes anywhere from 9-14 at times based on my breathing at the time and doesn't disturb my sleep. As far as the mouth taping issue. I'm a little wigged out about that too, but I'm running out of options because I've been through two full face masks that don't work and the chin strap didn't work. It's starting to look like an option out of sheer desperation of wanting to get the treatment where it belongs..in my airway. Hope you don't run off and do stick around. Trust me, some if not all of us are reading and listening.

[bdp522]

I had no choice but to figure it all out for myself...Thanks to everyone here...I have. My doctor TOLD me to figure it out for myself. My RT is through Apria...'nuff said. I have read and read and read the post on this forum. I have asked questions and gotten mostly wonderful answers. I have learned so much here! I change masks and pressures as needed. I DO tape my mouth shut every night. My doctor is aware of this and is fine with it.
I recently had my yearly physical. My doctor was so impressed with my general health and results on xpap that he has asked me to help him. Yep...he has OSA and will be starting on xpap soon!

Brenda

[Perchancetodream]

I had no choice but to figure it all out for myself...Thanks to everyone here...I have. My doctor TOLD me to figure it out for myself. My RT is through Apria...'nuff said. I have read and read and read the post on this forum. I have asked questions and gotten mostly wonderful answers. I have learned so much here! I change masks and pressures as needed. I DO tape my mouth shut every night. My doctor is aware of this and is fine with it.
I recently had my yearly physical. My doctor was so impressed with my general health and results on xpap that he has asked me to help him. Yep...he has OSA and will be starting on xpap soon!

Brenda

Hope you have given him the URL for this website! He sounds like the kind of medical professional we could all benefit from as well as help out...

Susan

[abysmillard]

It's pretty obvious that people who go ballistic at the thought of mouth taping have not tried it or seen it done. I don't tape, but I use Polggrip adhesive to keep my lips sealed at night. The Polygrip keeps my lips closed when I'm relaxed, but if I wake up and have to say something, get a drink of water, or when I get up in the morning I, well, I just open my mouth. Neither the Polygrip nor any of the types of tape I see mentioned (save duct tape) here are even close to a match for the jaw muscles!

I wonder if people are thinking that we wrap tape circumferentially around our entire heads to cover the mouth. I've considered that to keep the mask on, but not to keep my lips closed!

[echo]

bear1mdr, though i appreciate your comments stem from your desire to help people and keep them safe, in my case:

- my sleep doctor APPROVES of my use of tape to keep my mouth shut (and in fact prefers THAT than to prescribing me a full face mask)

- my sleep doctor APPROVES of and ENCOURAGES the fact that I am adjusting my pressure (within the range recommended by him), and is actually glad I am doing it. It seems that during the sleep study my numbers were "all over the place" so they weren't sure what pressure to prescribe me !! So they sort of half-randomly gave me a range to try, so now I am experimenting to see what numbers I get and how I feel within that range!

So please get all the facts before assuming that we're all just willy nilly adjusting our pressures.

And for the others that are doing this "without doctor's guidance," well that's a whole other topic on disinterested, uninformed, and misinformed doctors and medical professionals (and insurance companies!), for which there are also many posts. Many fall through the cracks, unfortunately, as many people do, not only for OSA but for many other medical conditions which are complex and not as well-researched and well-known, as opposed to for example diagnosing and treating diabetics (who by the way control their own insulin shots!).

[roster]

[quote="mommaw"]I don't get into they fray often but gotta weigh in here.

bearimdr,

I am glad you are not my RT! With an attitude like yours, many apnea sufferers will be bullied into thinking they have no control over their treatment. That is a bunch of poppy-cock! I am a 60 yr old grandmother and I am very active in my treatment. I ADJUST MY PRESSURE based on my softwear. MY sleep doctor, who has many years of higher EDUCATION, is fully aware of the fact that I have the software and have tweaked my numbers to get optimal AHI results. He has stated to me that he wishes more of his patients were active in their treatment. I have spoken to the local AWAKE chapter here and have just recently received another invitation from my doctors office to speak again.

After my PSG, I was given a bipap set at 18/14 based on the results of a very short sleep cycle at the sleep center. After finding this board, reading, reading, reading and talking to all the very knowledgeable members on this forum (actual cpap users), I ask my doctor for a trial apap for one month. He agreed, we found the PSG to be wrong and I am now on that apap with a setting of 8-12 with a 90% of 9-9.5. I just recently decided to set the apap to straight cpap to see if there was any difference in my numbers, there are none. I told my doctor what I was going to do and he said great, let me know how it works out. He did not shudder at the thought but more importantly supported me.

So don't come on this forum PREACHING, it is NOT WELCOME and will not be tolerated.

We are not a bunch of dummies blindly following an RT with "six years of higher education in respiratory care" who comes on this forum and starts preaching, without even a "hello, how are you". You could have at least said hello and let us welcome you to the board as we do to all newcomers.


Gilda

[kriminal]

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.

That was just one post, stop being a drama queen, your tone is too self-righteous and high on your horse.
Also your background means squat if you don't provide explanations for your recommendations. We are not supposed to take advice on good faith, and you are not even a sleep doctor

Your intentions may be good, but results are what matter

[WearyOne]

<snip>You asked for a reason not to tape your mouth closed so here is one reason that should make sense to most of you.

If you are using a nasal mask with your mouth taped closed and the device malfunctions or the power goes out what will happen? Well, other than the obvious events here's one you may not have though of... you continue to sleep as though your machine is still functioning properly and instead of your exhaled CO2 being flushed from your mask as it should be you re-breath your own exhalation for the entire night.

Bear1mdr, if you're still here, during a power outage, wouldn't most people wake up because they would be getting so much less air, just like before cpap when you'd have an event, your body would wake you up. (Plus, you'd get a little air through the vent holes until you woke up, which I imagine wouldn't take long.) Maybe I'm wrong here.

I don't tape because I've tried it and I can't go to sleep that way. I panic after a while because I can't open my mouth. I know, weird. I also can't wear nasal masks because I don't keep my mouth shut!

As far as setting our own pressure, I will fiddle with mine if I see, through the software, that my numbers aren't looking good. Period. No one has shown me enough evidence to make me think to the contrary. I will say, however, that I only fiddle with my pressure (straight cpap) up to the top number from the titration, because that's what I feel comfortable doing. So many people go by how they feel---I can't do that because I have other health issues (thyroid, for example) that can cause me to feel bad the same way as cpap pressure needing a change could make me feel. I go by the software numbers. Now, there may be some people who can pay $1,000 to $2,000 for a new sleep study every time they think they may need a change in pressure, but I'm not one of them, especially when the way I feel could be caused by something completely unrelated to cpap pressure.

Besides, my sleep doc knows that I fiddle with it, within that range, and he has no problems with it.

There are a few things that set the folks here off a bit, and you picked two of them: "Don't set your own pressure," and "Don't tape your mouth." And, unfortunately, you seemed to jump in with both barrels blazing.

It's my health and I'm the one who has to live with what I decide to do or not to do in that regard. Not the doc, not anyone here, etc. Sure, I want and need direction from medical professionals because, duh, they've been educated in the field I'm seeing them for. But, most of them haven't lived with my condition, so I also want input and advice from others who are experiencing what I'm going through, plus my own research. I don't know what I would have done without the fine folks here, and the wonderful people over on the Thyroid Disease Chat Center.

Pam

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): Titration, CPAP, Power

[Snoredog]

Congratulations! Bear1mdr you have won an award!

[sleepycarol]

If you went to college and majored in education you learned about the bell shape curve.

If you don't know what the bell shape curve is I will enlighten you.

You have those that are in the elite group and make an A -- there isn't many that fall into this category -- then you have an upswing and those that will make a B -- there is a greater number in this category than in the A group -- but still an awesome group -- next you have the ones that make up the C group - this should be the largest group there is with most of us falling somewhere in this midrange -- then you start the slump with the D group and should have some in this group that lag behind the others -- then you have "the feared" group that fails and gets an F.

In any group of people in a class you should see (if the class is representing a whole) a bell shaped curve.

Don't forget someone HAS to be last in their class -- not everyone can be at the top of their class.

It seems that many of us somehow find the bottom of the barrel when it comes to doctors, RT's, DME's. etc.