Replies to This Discussion

Permalink Reply by Mike on March 30, 2009 at 6:22pm

what this often degenerates into on other forums that shall remain nameless is a pissing contest pitting patients against the pros. i want very much to avoid that dynamic here. i think so far we're doing pretty darn well...

Rock Hinkle said:

Thanks for the artical JNK. Got any other good info for an up and coming tech?

I do agree that it is probably where the industry is going. If you have the Doc's permission that is one thing. Then it becomes a part of your prescription. Along with the right and knowledge to do this comes a certain responsibility. a responsibility to yourself if your are the one raising/ or changing the prescription. Your right everyone on this site is probably smarter than the auto algirithm. That however does not give anyone the right to do it before they know what the side effects could be. Most of the people are here because of the bad experience they had with their sleep professionals. Just because a Dr. says he can trust a patient to raise the pressure does not mean that they are armed with the whys and hows. I think you should have to take an apne/titration test first to demonstrate that you understand the complexity of apnea/hypopnea syndrome and the titration there of. At the very least to know not to raise for CSA. Then let them go and do what ever they want. At least by doing this we would know without a doubt that the Dr. gave, and the pt got, an education on sleep related breathing disorders and the use of a xPaP machine( excluding Judy whom has proven that she is far more educated than me on the subject.)
j n k said:

Personally, I advocate getting diagnostic sleep studies done. It is my opinion that it is good to screen patients for other conditions when the patient can afford to get that done. I also advocate getting a professional initial titration. PLMs and centrals can be unmasked during that process, and they may turn out to be serious enough to address in some cases. But once a patient is diagnosed plain vanilla OSA and a sleep doc thinks that patient can be trusted with an autotitrating machine, that is a green light to self-titrate, in my opinion. After all, I ain't no genius, but I'm smarter than the average auto algorithm that docs are trusting patients with in machines set wide open at 4 to 20 cms. Now THAT is dumb. On the other hand, self-titrating plain vanilla OSA is the best way for any patient to optimize treatment for the best health possible.

Only one man's opinion.

It may be worth noting, though, that many sleep docs advocate allowing the patient to adjust pressures. It's the way the industry is headed, I believe.

Here's an interesting article on simplified protocols too:

http://www.sleepreviewmag.com/sleep_report/2009-03-18_03.asp

• ▶ Reply

Permalink Reply by RockRpsgt on March 30, 2009 at 6:30pm

Carol, As a sleep professional I am sorry that this happened to. I feel a little bit more responsible for the care that I give my pts. I try to educate them during the NPSG, and give homework assignments(sleepguide.com) prior to the CPap study. I know that it is sometimes hard, but it is our responsibility to demand the best from our medical professionals. It is after all our treatment that pays their bills. If a Dr. is to busy to see you, he is too busy to treat you! If you are not happy with your treatment speak up. It is very unprofessional in my opinion that you did not get an education on your treatment. I can't say that I completley advocate self titration, but I do understand

sleepycarol said:

I too realize this is a touchy subject with many professionals in the sleep field. Yet, for many of us that are thrown to the wolves -- with no support, no follow-ups, no anything -- we do the next best thing.

I make informed choices in my life. I do not take things lightly and ask anyone that knows me and they will tell you it takes me forever to make decisions that I have to live with. Picking out my car (when we purchased it new) was a very difficult decision for me to make. When we have purchased new furniture. I go look at all the new up to date styles. A week or so later I am back in the store to relook. Give me another week or so and I have narrowed the choices down. Back to the stores I go. I think you get the idea by now. I have a college education with over 190 college credits under my belt. So I am not exactly a simpleton that goes off on tangents.

When I asked my primary care physician for a sleep study -- she scheduled it. I thought for sure I would meet with the sleep doctor at some point. Nope, never did. We are a small community with only one sleep doctor for approximately 75 mile radius. It takes over a month or more for appointments. My primary doctor scheduled it. I went to the lab as instructed, given the sleep study, and no one told me anything, no appointment with the sleep doctor was given, zip -- nada -- nothing. Okay next step, is my primary care doctor calls and says that the sleep doctor has faxed her a request that I come back for a titration. No one had even explained that the results were positive and I would have to go back. I set up the return visit for the titration. When I went for it the nurse that was doing the study was surprised that I knew absolutely nothing about my results. Told her I had not spoken to the doctors. She explained how busy he was and it was difficult to get an appointment, etc. etc.

When the sleep doctor faxed the stuff to my primary care doctor she called and told me to pick up the paper work and go get my cpap. No explanations, no anything. Took the paper work to the DME that set it up and was headed out the door.

AND I want to leave my treatment up to THEM? Don't think so!! I will take my chances and monitor my own therapy with the software and if pressure changes are needed I will make them. My primary care doctor is fully aware of me changing my pressure and I have her blessings. Says she doesn't know much about sleep apnea or machines and I know more than she does.

Don't mean to sound critical of those in the field of sleep medicine. If you are here helping you are in the minority. Many just shove their patients out the door with little or no information. That is why forums like this are invaluable so that users can get the support needed to make informed choices.

If I had a sleep doctor that took the time to help his patients and a DME that was helpful and knowledgeable I wouldn't have to take my therapy in my own hands. I would allow them to do their job.

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Permalink Reply by RockRpsgt on March 30, 2009 at 6:34pm

not with carol. hers are probably bigger than mine mike!

Mike said:

what this often degenerates into on other forums that shall remain nameless is a pissing contest pitting patients against the pros. i want very much to avoid that dynamic here. i think so far we're doing pretty darn well...

Rock Hinkle said:

Thanks for the artical JNK. Got any other good info for an up and coming tech?

I do agree that it is probably where the industry is going. If you have the Doc's permission that is one thing. Then it becomes a part of your prescription. Along with the right and knowledge to do this comes a certain responsibility. a responsibility to yourself if your are the one raising/ or changing the prescription. Your right everyone on this site is probably smarter than the auto algirithm. That however does not give anyone the right to do it before they know what the side effects could be. Most of the people are here because of the bad experience they had with their sleep professionals. Just because a Dr. says he can trust a patient to raise the pressure does not mean that they are armed with the whys and hows. I think you should have to take an apne/titration test first to demonstrate that you understand the complexity of apnea/hypopnea syndrome and the titration there of. At the very least to know not to raise for CSA. Then let them go and do what ever they want. At least by doing this we would know without a doubt that the Dr. gave, and the pt got, an education on sleep related breathing disorders and the use of a xPaP machine( excluding Judy whom has proven that she is far more educated than me on the subject.)
j n k said:

Personally, I advocate getting diagnostic sleep studies done. It is my opinion that it is good to screen patients for other conditions when the patient can afford to get that done. I also advocate getting a professional initial titration. PLMs and centrals can be unmasked during that process, and they may turn out to be serious enough to address in some cases. But once a patient is diagnosed plain vanilla OSA and a sleep doc thinks that patient can be trusted with an autotitrating machine, that is a green light to self-titrate, in my opinion. After all, I ain't no genius, but I'm smarter than the average auto algorithm that docs are trusting patients with in machines set wide open at 4 to 20 cms. Now THAT is dumb. On the other hand, self-titrating plain vanilla OSA is the best way for any patient to optimize treatment for the best health possible.

Only one man's opinion.

It may be worth noting, though, that many sleep docs advocate allowing the patient to adjust pressures. It's the way the industry is headed, I believe.

Here's an interesting article on simplified protocols too:

http://www.sleepreviewmag.com/sleep_report/2009-03-18_03.asp

• ▶ Reply

Permalink Reply by Judy on March 30, 2009 at 7:17pm

My theory is: ONE CHANGE at a time, whether mask or pressure, and stay at that ONE CHANGE for ONE SOLID WEEK. Analyze the data before deciding on the next change, if any. And don't be making drastic changes. Your in-lab titration most likely wasn't all that far off regardless how badly you slept. The Resmeds allow for pressure changes in 0.2 cm increments. If you find yoor current pressure close, but "not quite ideal", then is REALLY the time to do your tweaking in 0.2 cm increments. If your pressure seems way off, still I wouldn't make more than a 1 cm change. Just keep in mind: ONE CHANGE at a time FOR ONE WEEK of data.

We Americans tend to a "bigger is better", "more is better" theory about life. We tend to do things to excess. There is a LOT to be said for "moderation" in most all things.

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Permalink Reply by Mike on March 30, 2009 at 8:47pm

i have total respect for Rock, and don't know how or if I misled him in any way. That said, I'm over it, and willing to engage in a virtual man-hug. that's about as mushy as i get though.

j n k said:

I have always had good experiences with doctors and sleep professionals. The only bad experience I had was with my former DME. The DME's RT just wasn't very bright. That's all. Other than that, a fine person, I'm sure. The tech who did my diagnostic and titration went above and beyond the call of duty in every way. My sleep doctor was amazingly good, in my opinion. I have total respect for the industry. I may be in the minority on that on the other board I participate on.

Here is where I get confused in self-titrating discussions though. How can a patient who decides to raise his pressure one cm be considered a danger to himself and to humanity by an industry, when, at the same time, it is an industry-approved practice to hand that same patient an autotitrating machine that will start at 4 cm and slowly raise the pressure up to 20 cm on the patient because of snores? It can't be both ways. Maybe I'm missing something. But it seems to me that if autotitrating is an industry-approved practice, all arguments against self-titrating have become antiquated, to say the least.

I feel bad, Mike and Rock Hinkle, if you two had some sort of misunderstanding, because from the posts I've read here, you both seem like reasonable, helpful, open-minded people who have each other's, and the public's, best interests at heart. I hope a back slap and man hug are in order, dudes.

jeff

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Permalink Reply by sleepycarol on March 30, 2009 at 10:02pm

I will be perfectly honest on my changes. I was having some issues of still not feeling up to par after a year on the machine. I had my reports and my AHI was still higher than I liked and thought that might be causing some problems. I asked a forum member on cpaptalk (restedgal -- the guru of cpap, along with judy) there if she had suggestions. On her suggestion I raised my minimum pressure 1 cm and upped the top number to 15. I was titrated at a pressure of 8 to 12. I have found there are nights when I do go up to 13 or 14. So far have not reached 15 and hope I don't. I discussed this with my primary care doctor and she said that she didn't have a problem.

I do think it is unadvisable to have the majority of patients changing their pressure -- if they are not proactive, do it behind a doctor's back, do not have the software to monitor changes, and don't have a clue as to what they are doing.

But for those that are more knowledgeable, have the software to monitor our therapy, do have some input with either a sleep doctor or their primary care doctor -- then I say make subtle changes and see if it helps. No way would I advocate someone changing their pressure by several cm at a time. That is foolhardy and dangerous as you pointed out Rock.

I hope that we are still friends Rock and I know I for one value your input here on the forum!! We just need more of you!!!

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Permalink Reply by RockRpsgt on March 31, 2009 at 12:01pm

We are definately still friends.

sleepycarol said:

I will be perfectly honest on my changes. I was having some issues of still not feeling up to par after a year on the machine. I had my reports and my AHI was still higher than I liked and thought that might be causing some problems. I asked a forum member on cpaptalk (restedgal -- the guru of cpap, along with judy) there if she had suggestions. On her suggestion I raised my minimum pressure 1 cm and upped the top number to 15. I was titrated at a pressure of 8 to 12. I have found there are nights when I do go up to 13 or 14. So far have not reached 15 and hope I don't. I discussed this with my primary care doctor and she said that she didn't have a problem.

I do think it is unadvisable to have the majority of patients changing their pressure -- if they are not proactive, do it behind a doctor's back, do not have the software to monitor changes, and don't have a clue as to what they are doing.

But for those that are more knowledgeable, have the software to monitor our therapy, do have some input with either a sleep doctor or their primary care doctor -- then I say make subtle changes and see if it helps. No way would I advocate someone changing their pressure by several cm at a time. That is foolhardy and dangerous as you pointed out Rock.

I hope that we are still friends Rock and I know I for one value your input here on the forum!! We just need more of you!!!

• ▶ Reply

Permalink Reply by RockRpsgt on March 31, 2009 at 12:09pm

personally I do not like the auto-titrating machines for the same reasons that I sometimes have problems with self titrating. It is not so much the act that I am worried about, But the act and being by ones self. If you are going to do it, use the buddy system, husband,spouse, or a friend. Just in case. Especially if you are going to go up 4-6cmwp in a day or 2. Predicting how a change in atmospheric pressure is going to effect the body is near impossible because each case is different.

Mike and I are fine, thanks for your concern though. He is my internet bromance.
Mike said:

i have total respect for Rock, and don't know how or if I misled him in any way. That said, I'm over it, and willing to engage in a virtual man-hug. that's about as mushy as i get though.

j n k said:

I have always had good experiences with doctors and sleep professionals. The only bad experience I had was with my former DME. The DME's RT just wasn't very bright. That's all. Other than that, a fine person, I'm sure. The tech who did my diagnostic and titration went above and beyond the call of duty in every way. My sleep doctor was amazingly good, in my opinion. I have total respect for the industry. I may be in the minority on that on the other board I participate on.

Here is where I get confused in self-titrating discussions though. How can a patient who decides to raise his pressure one cm be considered a danger to himself and to humanity by an industry, when, at the same time, it is an industry-approved practice to hand that same patient an autotitrating machine that will start at 4 cm and slowly raise the pressure up to 20 cm on the patient because of snores? It can't be both ways. Maybe I'm missing something. But it seems to me that if autotitrating is an industry-approved practice, all arguments against self-titrating have become antiquated, to say the least.

I feel bad, Mike and Rock Hinkle, if you two had some sort of misunderstanding, because from the posts I've read here, you both seem like reasonable, helpful, open-minded people who have each other's, and the public's, best interests at heart. I hope a back slap and man hug are in order, dudes.

jeff

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