Looking For Tips On How To Interact With The Doctor

[chunkyfrog]

It is not unusual for a doctor to not be educated on the intricacies of a cpap machine.
New models come out all the time, and the doctor has enough to do keeping up on medicine.
The "help" at the DME are frequently under educated as well.
They are often on the same level as sales clerks at electronics retailers, given only enough information to up sell and close deals.
If you can find any who go above and beyond, treat them like gold!

[old dude]

The good part is, he conceded to your concerns, even if he didn't admit it.

The negative is, he in fact deceived you, mostly in the interest of keeping you in a less capable machine. Why? What's in it for him?

That's what I'd like to know. He said that if we can't do it with this machine it just won't work. I'm one of those people who can't tolerate CPAP. He mentioned that my next best alternative was to see a specialist dentist for a possible mouth piece. I don't know how much this applies but he looked at my throat and said I have one of the narrowest he's seen. He asked if my ENT discussed anything he could do with that. I told him the ENT discussed surgery but felt that my chances of having a great deal of success would be slim.

Could you explain how you're "one of those people who can't tolerate CPAP"?

Outside of a person with some physical deformity or issue that prevents them from strapping on a mask, I'd guess that the majority of "those people" simply haven't yet been motivated to try hard enough. Listen, it's hard for most folks and it's a genuine PITA. But depending on your AHI and other parts of your sleep study it's likely the only really effective solution for you.

[webbie73]

I don't think it's fair to pick at me for what I said or didn't say. Nor is it fair to make assumptions as to what I care about. I came to this forum for help, not to be picked on. I stated what the doctor said. I am not an expert and don't know what the capabilities of this machine are. If it, in fact, can not be set that way he should know that. And if he let me walk away thinking that's what he did then he pulled a fast one on me and that pisses me off! Why would he do that? What would be the purpose?

Let's all step back a minute and try to remember what it was like when we were new to cpap.

First off I might have missed it but did you ask the doctor why your auto machine was set at a set pressure rather than a range? As a veteran cpap user I was using a set pressure and having terrible time exhaling. I switched over to the auto mode with a range pressure and am doing just fine. Good luck!

[Mike208]

The good part is, he conceded to your concerns, even if he didn't admit it.

The negative is, he in fact deceived you, mostly in the interest of keeping you in a less capable machine. Why? What's in it for him?

That's what I'd like to know. He said that if we can't do it with this machine it just won't work. I'm one of those people who can't tolerate CPAP. He mentioned that my next best alternative was to see a specialist dentist for a possible mouth piece. I don't know how much this applies but he looked at my throat and said I have one of the narrowest he's seen. He asked if my ENT discussed anything he could do with that. I told him the ENT discussed surgery but felt that my chances of having a great deal of success would be slim.

Could you explain how you're "one of those people who can't tolerate CPAP"?

Outside of a person with some physical deformity or issue that prevents them from strapping on a mask, I'd guess that the majority of "those people" simply haven't yet been motivated to try hard enough. Listen, it's hard for most folks and it's a genuine PITA. But depending on your AHI and other parts of your sleep study it's likely the only really effective solution for you.

So, in your mind, if you say you can't tolerate CPAP it's because you really don't want to? That's bullshit. I've done enough research that I know there is a certain percentage of people who really can not do CPAP for one reason or another. I have several things against me. Sinus/allergy issues, stomach issues, and a very narrow throat. I realize that I have OSD. But if the treatment doesn't allow me to get restful sleep what good is it? I sleep better without the mask! Yes, I have apnea but I sleep. Waking every hour because of one thing or another is not restful sleep. This is what happened to me during the sleep study and I could not function the next day. That's what scared me away from CPAP then! But I eventually decided to give it a try. And it's going just as I thought it would. I know me. I know my body. Nothing ever comes easily. I'm always the one who doesn't fit the norm whether it comes to drugs or anything else. No, I'm not beat before I try. I'm willing to try anything. But I know when it's not working.

[Mike208]

I don't think it's fair to pick at me for what I said or didn't say. Nor is it fair to make assumptions as to what I care about. I came to this forum for help, not to be picked on. I stated what the doctor said. I am not an expert and don't know what the capabilities of this machine are. If it, in fact, can not be set that way he should know that. And if he let me walk away thinking that's what he did then he pulled a fast one on me and that pisses me off! Why would he do that? What would be the purpose?

Let's all step back a minute and try to remember what it was like when we were new to cpap.

First off I might have missed it but did you ask the doctor why your auto machine was set at a set pressure rather than a range? As a veteran cpap user I was using a set pressure and having terrible time exhaling. I switched over to the auto mode with a range pressure and am doing just fine. Good luck!

No, I did not ask that. I didn't know you could do that. They seem to be insistent that I be at that 13 mark. They're thinking I can start out low and work up to it.

[old dude]

The good part is, he conceded to your concerns, even if he didn't admit it.

The negative is, he in fact deceived you, mostly in the interest of keeping you in a less capable machine. Why? What's in it for him?

That's what I'd like to know. He said that if we can't do it with this machine it just won't work. I'm one of those people who can't tolerate CPAP. He mentioned that my next best alternative was to see a specialist dentist for a possible mouth piece. I don't know how much this applies but he looked at my throat and said I have one of the narrowest he's seen. He asked if my ENT discussed anything he could do with that. I told him the ENT discussed surgery but felt that my chances of having a great deal of success would be slim.

Could you explain how you're "one of those people who can't tolerate CPAP"?

[webbie73]

I don't think it's fair to pick at me for what I said or didn't say. Nor is it fair to make assumptions as to what I care about. I came to this forum for help, not to be picked on. I stated what the doctor said. I am not an expert and don't know what the capabilities of this machine are. If it, in fact, can not be set that way he should know that. And if he let me walk away thinking that's what he did then he pulled a fast one on me and that pisses me off! Why would he do that? What would be the purpose?

Let's all step back a minute and try to remember what it was like when we were new to cpap.

First off I might have missed it but did you ask the doctor why your auto machine was set at a set pressure rather than a range? As a veteran cpap user I was using a set pressure and having terrible time exhaling. I switched over to the auto mode with a range pressure and am doing just fine. Good luck!

No, I did not ask that. I didn't know you could do that. They seem to be insistent that I be at that 13 mark. They're thinking I can start out low and work up to it.

In that case talk to him about a range. You can set the auto mode up yourself and see how you do. I am surprised some of the gurus here have not suggested this and helped you set the machine and suggest pressure ranges. I can only tell you what my set pressure is and what my range is set at. 10 as a set pressure and a a range of 10-14. I like how the pressure adjust to my particular needs every night. FYI it does vary.

[Mike208]

You know, like assholes, everyone has an opinion. That's what you get on a forum. I have had some nice people offer some good advice and encouragement. They try to understand. I have had a couple of people attempt to pick at what I say, criticize, and be smart. I come on here as a newbie, unsure of what's going on, asking for help. But they want to pick, act like I should know what I'm talking about. There's no need for that. Unless you are actually in a persons shoes you don't really know what they're experiencing. You're quick to assume and lecture. I don't need that. I don't think I want to be a member of this forum anymore. I wish you all the best.

[49er]

You know, like assholes, everyone has an opinion. That's what you get on a forum. I have had some nice people offer some good advice and encouragement. They try to understand. I have had a couple of people attempt to pick at what I say, criticize, and be smart. I come on here as a newbie, unsure of what's going on, asking for help. But they want to pick, act like I should know what I'm talking about. There's no need for that. Unless you are actually in a persons shoes you don't really know what they're experiencing. You're quick to assume and lecture. I don't need that. I don't think I want to be a member of this forum anymore. I wish you all the best.

Mike,

I totally understand your frustration. You still might stick around and PM folks whom you feel have offered you good advice.

Also, Pugsy, the star player of this forum, hopefully will eventually return and be able to help you out.

Meanwhile, I might consider pushing your doctor hard for a bipap because many times, that can alleviate the issues with Gerd, although not always. If he won't cooperate, it is time for another doctor.

And Webbie made a good suggestion about setting an auto range as previous posters have. First of all, does someone have a link for Mike to download the software he can use to monitor his therapy? Sleepyhead doesn't yet work, right? Does rescan? Sorry, I am not totally sure about this and don't want to give incorrect information.

Since the doctor recommended 9 as a straight pressure, perhaps setting it from something like 8-11 might be worth a shot in light of your gerd problems? What do other folks think since I am definitely not a guru on this?

Hang in there.

49er

[Greg Riddle]

Pap therapy for me is a struggle. Like you I cannot tolerate straight cpap. On straight cpap any pressure over 15 and I get severe aerophagia. Waking several times a night in pain. I just recently was switched to bilevel and now can get the pressure I need to treat the apnea without the pain. There are many struggles to deal with. I also have severe allergies nasal congestion. Dealing with mask leaks, discomfort, finding a good mask. If your having that much trouble with aerophagia you should talk to dr about bilevel machine.

I to miss sleeping without a pap machine but I got a short time where i was treated and know how good it is to get good rest. You never know how bad it is until you get the therapy to start working. Keep at it.

[palerider]

First of all, does someone have a link for Mike to download the software he can use to monitor his therapy? Sleepyhead doesn't yet work, right?

sleepyhead works on the as10 as of version 0.9.8-1 (current)

[OkyDoky]

And Webbie made a good suggestion about setting an auto range as previous posters have. First of all, does someone have a link for Mike to download the software he can use to monitor his therapy? Sleepyhead doesn't yet work, right? Does rescan? Sorry, I am not totally sure about this and don't want to give incorrect information.

Since the doctor recommended 9 as a straight pressure, perhaps setting it from something like 8-11 might be worth a shot in light of your gerd problems? What do other folks think since I am definitely not a guru on this?

Hang in there.

49er

He has Sleepyhead up and running from his first post. viewtopic.php?f=1&t=102922&st=0&sk=t&sd=a&start=60 So he should be able to monitor if he decides to try auto. The only screenshot was a summary for Dec 19 - Jan 2.

[49er]

Thanks PR and Webbie.

49er

[Julie]

Look - why do you take such offense at strangers and let your buttons be pushed like that? Your health is what this is about and just because you don't like someone, or can't take the heat of one note on an internet forum, is not a reason to cheat yourself out of good treatment. So it'll take a few wks, big deal - at least your family will still have you around for a while and you'll get to finish whatever in your life you had plans for when you got sleepy å lot.

[chunkyfrog]

Hey, kids, have you forgotten what a struggle this was for so many of us?
Most people have some struggle with cpap, a period of getting in the "groove".
For some, that groove is quite shallow, and the struggle continues in some form for an extended time.
I am one of the "lucky" ones. My apnea had reached the point where it was preventing me from
getting any but a taste of sleep. I was so desperate to actually sleep that the only thing I had to "tolerate"
was the DME's poor selection of a mask that was a painfully lousy fit.
The air pressure was never an issue, being the only thing that stood between me and total misery.
Without the overt symptoms I had, it will be harder to be/stay committed--but it is no less important to preserve your health.
I wish you the strength to stay the course (goodness, that sounded corny!).