Should I tell the Dr. I have played with the settings?

Hi, Folks, I have my yearly visit with the sleep doctor soon. I have been having horrendous problems with insomnia for the past couple of months but ( after a rough start) I am getting good therapy with the ASV now when I sleep. With the help of the people on this forum I adjusted the settings up a little. I really think the insomnia has nothing to do with the settings. I have RA which sometimes comes with sleep issues. And I do think it might have something to do with some sort of adrenal hormone imbalance. Of course, that's a different doctor...Anyway, I'm trying to decide if I should come clean with the sleep doctor about my changing the settings. I don't know how he will react. I'd like him to get the full picture. What do you think? Thanks for your thoughts.

Best,
Tuza

Your body, your C/Apap, your life... The doctor's not your father or the cops or a god and if he gets upset about you changing your own machine for your own benefit, change doctors. Who cares if he's upset otherwise - you're not married to him, and you're a grown-up (aren't you?).

tuzacat wrote:Hi, Folks, I have my yearly visit with the sleep doctor soon. I have been having horrendous problems with insomnia for the past couple of months but ( after a rough start) I am getting good therapy with the ASV now when I sleep. With the help of the people on this forum I adjusted the settings up a little. I really think the insomnia has nothing to do with the settings. I have RA which sometimes comes with sleep issues. And I do think it might have something to do with some sort of adrenal hormone imbalance. Of course, that's a different doctor...Anyway, I'm trying to decide if I should come clean with the sleep doctor about my changing the settings. I don't know how he will react. I'd like him to get the full picture. What do you think? Thanks for your thoughts.

Best,
Tuza

Depends........on what kind of relationship you have with him.
In my first therapy follow-up meeting with my sleep doctor (who prescribed a pressure of 18 cm.) I proceeded to tell him that I couldn't breathe at that pressure and reset my machine to 10 cm. (and showed him the Encore reports to prove how well I was doing on almost half the pressure) and he sort of "flipped out".......amazed that I could be doing that well at almost half the pressure he had prescribed but also wondering how I had or had known how to change the settings. I told him I just went into the Setup menu and changed them.
He and I had had a "tense" relationship since our first meeting........and from other patients of his I had known, I had been warned that his "bedside manner" left alot to be desired. However, it ended up being our LAST meeting and I didn't lose any sleep over it. I had the software to monitor my therapy and didn't feel like I needed anyone telling me what I already knew.
The bottom line is it's YOUR therapy and nobody will take as much interest in it as YOU.
An ASV machine and therapy can be a little more complicated than just straight "garden variety" OSA, but the more you become familiar with it and how to tweak it, the better your therapy will work.


Den

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It might be a good way to determine if your doctor values YOUR opinion,
---and whether or not to keep him.

Thanks for your comments!

Den and Chunky, guess I don't particularly want to lose this doctor. He's kind of laid back and is a cpapper himself so he has a clue about what it's like.There are very few doctors that I actually like and even fewer that I have any confidence in. I think what I'll do is print out some charts for him to look at so he can see for himself the improvement and see what happens. He's a neurologist so maybe there is still something in his area of expertise that might be causing the insomnia.

Julie, you SO made me laugh! I just spent the past couple of days diplomatically telling my new neighbor he needed to get a survey before he "accidentally" put his fence on my property. As of yesterday, new survey complete, fence stakes moved off my property, and he agreed to replace the part of my fence he demolished when he thought it belonged to him. Your talking to a retired Union Steward.

This site has been huge in making my therapy work!

Best,
Tuza

I think that I'd just go ahead and mention that you looked at your sleep data, and changed your settings a little to see if you could improve your therapy. And it did help. Since you're getting good results, as long as you look at your sleep data before (and after) making changes, he shouldn't have any objections.

Wow - good for you! So glad you're not a 'little woman'! It's hard to know who's on the other end of things here of course, and I just pictured a possible shrinking violet vs shop steward (of all things ). I don't think you'll have any problem with him anyhow from your description. But please let us know if you do... jerks come in all sizes.

Roger, I think I will dig out some old charts from before I changed the settings.

Julie, I knew you were thinking the "shrinking violet" thing. I learned a long time ago in the school system if you don't ask for what you want you won't get it. One time I was in a school with three other art teachers and 2000 students. Our budget was 15 cents per student for the year. When I spoke to the principal about it he suggested we solicite local businesses for donations. I just looked at him and said, " You try telling a classroom teacher to go begging door to door after school." Guess whose program got a boost? Anyway, eventually, I became the Steward for my school and had to go to bat for my colleagues.

I was just trying to figure out what would give me the best outcome for this visit - to tell or not to tell - how to approach it if I did. I hate waste of time visits where you go in because the insurance company says it's time.

Yeah, I kind of agree with the others - It depends. I don't think I would lead with the information. Why not let him look at the reports and see if he notices? If he does, why not say something like, "Yes, I had to tweak the settings a little to get these good results"? If he doesn't notice, it might tell you something about how he, or his staff, feels about the reports.
If he doesn't notice, I think you should mention the fact that you have adjusted your therapy for better results. If you are going to work together, he needs to know your capabilities and understanding. From your description, I'm guessing he will be OK with your active involvement.
After discussing the report, I think your next question should be, "What are we going to do next to resolve this insomnia issue?" Or whatever your issue is.

Thanks for your input, Jay, I will go prepared and play it by ear.

I agree with Jay. If he looks at your SD card the changes can be seen on the card so he might mention it first.

Go ahead and burst his bubble by telling him that the knowledge needed to access set-up menus is now available to the many patients who frequent XPAP forums and share the info that Doctors and DME's wanted to be kept a secret.

Wulfman... wrote:

tuzacat wrote:Hi, Folks, I have my yearly visit with the sleep doctor soon. I have been having horrendous problems with insomnia for the past couple of months but ( after a rough start) I am getting good therapy with the ASV now when I sleep. With the help of the people on this forum I adjusted the settings up a little. I really think the insomnia has nothing to do with the settings. I have RA which sometimes comes with sleep issues. And I do think it might have something to do with some sort of adrenal hormone imbalance. Of course, that's a different doctor...Anyway, I'm trying to decide if I should come clean with the sleep doctor about my changing the settings. I don't know how he will react. I'd like him to get the full picture. What do you think? Thanks for your thoughts.

Best,
Tuza

Depends........on what kind of relationship you have with him.
In my first therapy follow-up meeting with my sleep doctor (who prescribed a pressure of 18 cm.) I proceeded to tell him that I couldn't breathe at that pressure and reset my machine to 10 cm. (and showed him the Encore reports to prove how well I was doing on almost half the pressure) and he sort of "flipped out".......amazed that I could be doing that well at almost half the pressure he had prescribed but also wondering how I had or had known how to change the settings. I told him I just went into the Setup menu and changed them.
He and I had had a "tense" relationship since our first meeting........and from other patients of his I had known, I had been warned that his "bedside manner" left alot to be desired. However, it ended up being our LAST meeting and I didn't lose any sleep over it. I had the software to monitor my therapy and didn't feel like I needed anyone telling me what I already knew.
The bottom line is it's YOUR therapy and nobody will take as much interest in it as YOU.
An ASV machine and therapy can be a little more complicated than just straight "garden variety" OSA, but the more you become familiar with it and how to tweak it, the better your therapy will work.


Den

.

Why was a pressure of 18 selected for you? In my clinical experience (I'm a respiratory therapist) the only patients I've treated who needed a pressure that high were folks who are morbidly obese.

OP, you might get a bad reaction (you might not) but I think you should be honest with your doctor. If you have data the shows your AHI is under control at a pressure of 10 cm it will bolster your case.

I knew I needed to have my settings changed while I was traveling and had started using the FitLife mask. I also didn't want to deal with any issues with my DME & insurance so I wanted to do it on their terms. I was able to get the DME to get my reports remotely (they had issued me a modem), send them to my doc, have my doc prescribe the increased pressure and have the DME remotely adjust the settings all in one day. (I'm paranoid about making changes that may impact my coverage.)

When I had my follow up and could explain to the doctor how I tracked my progress and how I could see where mask changes caused changes in what pressure I needed, identifying for her each change of mask and how that correlated with the changes in my AHI, she was thrilled. She was excited to see the correlations were so on target and happy to see that I had not only been compliant but had taken responsibility for trying to make this a success (I had failed once five years previously).

It'll be a good test of how committed your doctor is to your treatment.