CPAPtalk.com

jdm2857 wrote:Pugsy, do you have a covert degree?

Yep, same one as most of you all here.....from the school of hard knocks....life in general.
That and I am an avid reader when it comes to stuff that I am interested in and believe me....a lot of the stuff I read...I had to read over and over again for little bits and pieces of it to stick and some of it still hasn't stuck solid...like how ASV stuff works....or how come I feel better on bilevel than I did on APAP and stuff like that. My questioning mind wants answers but sometimes I just can't find the answers I am looking for but sometimes while searching I find other answers to questions I didn't even know I had. So I keep reading and thinking and what iffing...like OP here and what if those centrals were arousal centrals and not the scarey centrals. I got lucky on that one...this is the second one that I know of for sure where when we increased the pressure the centrals went away. It also teaches me that a person can have them and not remember many awakenings where we could normally discount them.
There's always something new to learn if a person has an open mind and just looks.

Freedom of the press; "The Anarchist's Cookbook" is legal in most civilized countries.
We are after all, anarchists of a sort, but I believe that what we write here, (with good intentions toward
fellow suffers of a deadly condition), is far less subversive and destructive than much published material available.
(Are we not publishing our comments by hitting "submit"?) I believe the first amendment applies here.
--But I'm not an attorney, and I slept in my car, because the hotel was too expensive.

NotLazyJustTired wrote:

Dan6 wrote:<snip> if he has a problem with me making changes that are within his guidelines then it will be time to replace him. I would understand if they had an issue with me making changes outside of the 4-20 guidelines.

<snip>

You raise an interesting point. Why would the doctor object to me, for example, raising my minimum pressure if it already is in the pressure range prescribed, and I hit and pass that pressure level frequently as demonstrated in the data?

Because he's a member of the medical mafia and they don't like you cutting in on their percentages. Capice?

Unfortunately, I'm NOT joking. Hey may be so thoroughly indoctrinated into the medical tribe that he doesn't even realize it.

However, he's also probably familiar with patients doing things like reducing the level of their blood pressure medicine or not taking the full course of antibiotics and causing themselves problems. Or turning their own CPAP pressure down to get comfortable and making their therapy useless.

Let me put it this way. The next time the sleep doc and I meet we are going to have a serious discussion about self therapy. If he shows the slightest hint of resistance, he is fired. I don't want a doctor who is more interested in grubbing money that he is my well being. I can go to a flea market and get that kind of treatment.

When I last saw my sleep doctor in December, my bi-pap settings were 21 IPAP & 15 EPAP.

I was complaining about aerophagia & my nightly AHI was in the 3-4 range.

Since then, I have "self medicated" myself after consulting with several experts here.

My current settings are IPAP 19.2 & EPAP 14.4 ... Aerophagia is completely gone and nightly AHI is alwasy less than 1.0.. I feel great!!

I have 3 months before I see my doctor again to come up with decent way to discuss my efforts... but the major reduction in AHI will make it much easier.



Dave

NotLazyJustTired wrote:Let me put it this way. The next time the sleep doc and I meet we are going to have a serious discussion about self therapy. If he shows the slightest hint of resistance, he is fired. I don't want a doctor who is more interested in grubbing money that he is my well being. I can go to a flea market and get that kind of treatment.

I love my doc, I was very fortunate. Showed up at my 30 day check post therapy appointment, told him the changes I made to pressures, he looked at my data, called me a Rock Star, and said, "See ya in a year." When I told him about this site, he asked for the address so he could check it out himself. He likely is passing it on to his other patients, too.

avi123 wrote:Your question of asking us about how to set your machine pressures by yourself is according to the FDA akin to asking posters to share their Rx with you. So if I use Paxil, Xanax, and Ambien which were prescribed to me by a licensed physician, it should be OK for you to ask me to send you some.

Another issue: your treatment data looks quite bad to me. If you are following medical advice given by laymen (and laywomen) posters and let's say that you die. Wouldn't your spouse or a relative come and sue posters on this board who gave you medical advice? All Doctors carry insurance for such purposes. But not posters in a chatroom even though they are liable to be sued.

"Medical advice is the provision of a formal professional opinion regarding what a specific individual should or should not do to restore or preserve health. Typically, medical advice involves giving a diagnosis and/or prescribing a treatment for medical condition. Medical advice is given in the context of a doctor–patient relationship. A licensed health care professional can be held legally liable for the advice he or she gives to a patient; giving bad advice may be considered medical malpractice under specified circumstances. Medical advice can be distinguished from medical information, which is the relation of facts. Discussing facts and information is considered a fundamental free speech right and is not considered medical advice. Medical advice can also be distinguished from personal advice, even if the advice concerns medical care."

When you quote something, it is helpful to mention what it is you are quoting. Because of your first sentence, I thought you were quoting some FDA publication. However, when I searched for it, I found those words in Wikipedia, a helpful source but hardly authoritative. Perhaps they appear elsewhere as well. In any event, I would be genuinely interested in knowing the source of the information that the FDA regards asking about how to set machine pressures as being the same as asking to share prescription medications.

ughwhatname wrote: I love my doc, I was very fortunate. Showed up at my 30 day check post therapy appointment, told him the changes I made to pressures, he looked at my data, called me a Rock Star, and said, "See ya in a year." When I told him about this site, he asked for the address so he could check it out himself. He likely is passing it on to his other patients, too.

When I told my doctor I knew how to change my setting by going on the internet, he said "Great, Come back if your AHI goes over 5 and you can't deal with it "

Pugsy, here is the same chart in Encore Basic

Here is the chart from last night. I remember waking up twice, but still AHI came down a little to 8.7

Health-related resources on the Internet can be a powerful tool if used wisely. . . .The most reliable and accurate Web sites, blogs and list-serves can lead users to information about prevention, diagnosis, treatment and experts, sometimes helping them to improve their quality of life dramatically. . . . Internet resources can help patients become more active advocates for their own interests.-- http://www.forbes.com/2008/12/23/medica ... ealth.html

I am not a lawyer, so I am not an expert on what any particular enforcement agency might consider legal or illegal. But my understanding is that a patient has an established right not only to accept or to refuse a treatment but also to make adherence choices involving the extent or the dosing of a treatment once it is accepted.

In other words, I believe that if I have the right to accept or refuse PAP treatment, I also have the right to dictate at which pressure(s) I am willing to accept that treatment.

That gives me the right to change pressures even when an RT does not have the right to give me the consent or to give me legal advice not to do what it is perfectly within my rights to do.

Any RT who tells a patient that the patient doesn't have the right to change pressures is giving legal advice to the patient that may adversely affect that patient's life. That is why I consider it a very serious legal issue when an RT gives a patient the impression that patients can't change pressures.

It would be nice if all RTs were legally required to remind patients that patients have the right to consent to or to refuse a particular pressure or set of pressures. I consider it a service to fellow patients when we remind them of their legal right to consent to, to refuse, or to modify medical treatments, and I don't think we are trying to be doctors or lawyers when we do that. I believe we are covered by the words at the bottom of every page here at cpaptalk.com:

at the bottom of every page wrote:The information provided on this site is not intended nor recommended as a substitute for professional medical advice.

Patients helping patients is one of the nicer things about the Internet.

In my opinion.

JNK,

I have been struggling with the words to say what you just said so eloquently. I concur. Nicely done.

SleepingUgly wrote:Also, when you hear the police banging on your door, flush your Clinician's Manual!

Now, can you imagine one person,
walking into their DME, sitt'n down, and resetting their cpap....
and walk'n out....
....they'd just think he was really sick.

Two people, can you imagine two people,
walking into their DME, sitt'n down, and resetting their cpap's....in sync....
and walk'n out....
...they'd just think they were crazy.

Now, three people.....three people...
walking into their DME, sitt'n down, and resetting their cpap's....
and walk'n out....
....they'd think it was an organization.......

....50...can you imagine 50 people a day...yea, I said 50 people a day,
walk'n into their DME, sitt'n down, and resetting their cpap's....
......with feel'n.....
and walk'n out....
...they'd think it was a movement.....

and my friends, that's what it is......

Sisters & Brothers of the Yahoo Hoserhood

jnk wrote:

Health-related resources on the Internet can be a powerful tool if used wisely. . . .The most reliable and accurate Web sites, blogs and list-serves can lead users to information about prevention, diagnosis, treatment and experts, sometimes helping them to improve their quality of life dramatically. . . . Internet resources can help patients become more active advocates for their own interests.-- http://www.forbes.com/2008/12/23/medica ... ealth.html

I am not a lawyer, so I am not an expert on what any particular enforcement agency might consider legal or illegal. But my understanding is that a patient has an established right not only to accept or to refuse a treatment but also to make adherence choices involving the extent or the dosing of a treatment once it is accepted.

In other words, I believe that if I have the right to accept or refuse PAP treatment, I also have the right to dictate at which pressure(s) I am willing to accept that treatment.

That gives me the right to change pressures even when an RT does not have the right to give me the consent or to give me legal advice not to do what it is perfectly within my rights to do.

Any RT who tells a patient that the patient doesn't have the right to change pressures is giving legal advice to the patient that may adversely affect that patient's life. That is why I consider it a very serious legal issue when an RT gives a patient the impression that patients can't change pressures.

It would be nice if all RTs were legally required to remind patients that patients have the right to consent to or to refuse a particular pressure or set of pressures. I consider it a service to fellow patients when we remind them of their legal right to consent to, to refuse, or to modify medical treatments, and I don't think we are trying to be doctors or lawyers when we do that. I believe we are covered by the words at the bottom of every page here at cpaptalk.com:

at the bottom of every page wrote:The information provided on this site is not intended nor recommended as a substitute for professional medical advice.

Patients helping patients is one of the nicer things about the Internet.

In my opinion.

There is an interesting, and related point implied in the above: is it even possible to give legally valid informed consent to CPAP treatment without adequate patient information about apnea, its treatment, the effects of treatment, and how to monitor treatment?

sleepapnea123 wrote:Here is the chart from last night. I remember waking up twice, but still AHI came down a little to 8.7

Looking better...AHI numbers would be better if we had the CA index out of that AHI. It would be under 5.0 then.
If you look at the grouping of CAs...one at the first sleep onset and the second cluster after the break in therapy and another sleep onset....so most likely some awake/semi awake CAs both times. So mentally remove the Clear airway index when you are looking at your AHI for now.

Looks like you are still pegging the max for short times because of the obstructive events.
Now is the time were I would go more slowly with the increases if it was me. .5 cm to both EPAP and Max IPAP and other stuff the same. Also now is the time if I did a 0.5 increase now I would probably give it a few days before trying another so that I could start looking for trends and patterns. There's going to be some normal variations from night to night even without changing a thing. Even now after nearly 4 years I still might have a 0.5 AHI one night and the next night 3.9 AHI...and not change a thing...but overall long term my AHI is just a little over 1.2...so long term I have more lower AHI nights than higher.
And a couple of times the aliens pay a visit and I get an AHI over 6.0 I just laugh an shrug my shoulders because it's random fluke.

It's looking a whole lot better than your first reports ...