Disagreement with doctor...

I have been using the SlimLine tubing since I got my machine about a month and a half ago. I was always feeling that it wasn't delivering enough air while I was inhaling. I also breath through my nose which seems to limit it even more, and I get the feeling that I'm having resistance to breathing through the night. For example, I feel chest soreness while breathing in (especially if I hold my breath and breathe in against held breath) and also somewhat of a compulsion to take very deep breathes all day, as if my breathing reflex is over-stimulated. So, I switched over to a full-size tube and it seemed to be an improvement.

Also, looking at my graphs, my pressure mostly bounces around between 10-12 throughout the night except a few spikes (possibly REM sleep?).

So, I thought it would be a good idea to raise the minimum to 12 to help a little more and keep me from running up against the lower pressure all night so the machine has to keep raising it. After all, it's not psychic, it can only respond to a restriction after it happens.

Today I had an appointment with the pulmonologist and requested this, but instead she lowered the pressure to 8. I guess the standard response to any discomfort is to lower the pressure?

What do you guys think? I haven't tried the lower pressure yet, but I'm willing to see how it goes for a few days. But I'm considering setting the hose type wrong (setting to slimline even though I have a 22mm hose) since that won't show up as a change in the prescription.

I don't know the answer but I would rather prevent an event by upping thr pressure rather than have an episode and then have the machine up the pressue.

But I have only been doing this for two months, so IDK....

BTW, that sore feeling in my chest just went away a few days ago... I know exactly what you are talking about...

Based on the information you listed, I think I would set pressures at 9 minimum and 15 maximum if your machine is set on Auto. If it is set on CPAP I would go with fixed pressure of 12. You should learn to change your own pressures.

LSAT wrote:Based on the information you listed, I think I would set pressures at 9 minimum and 15 maximum is your machine is set on Auto. If it is set on CPAP I would go with fixed pressure of 12. You should learn to change your own pressures.

It was set on automatic 10-16, now 8-16. I can change it but it will show up when the doctor looks at the data.

First the prescription is no more than a SWAG, a place to start.
I saw a new sleep doc about 6 months ago. He recommended 2 changes. Try the machine with no humidifier, that lasted about an hour.
Raise the minimum pressure. That lasted about 2 days. I lowered the maximum pressure and things have generally been better. Not sure I will be returning as long as this forum is here. I get much better results from advice here than the doctors I have seen.
Now the DMES advice, that's invaluable. Anything they say to me isn't worth the paper it's written on.

Try the doctors recommendations and document your results, then do what you want and document your results. Fine tune using Sleepyhead and then make the difficult decision weather to return to the doctor again.

Unless the doctor uses XPAP himself, most don't know as much as we do after 6-12 months experience with help from this forum.

Who cares if he sees that your changes work better than his.

bwexler wrote:Who cares if he sees that your changes work better than his.

I'm not concerned about that, I'm concerned that she'll be upset with me for changing the prescription without her permission.

FlyingMoose wrote:

bwexler wrote:Who cares if he sees that your changes work better than his.

I'm not concerned about that, I'm concerned that she'll be upset with me for changing the prescription without her permission.

It is air. Unlike a diabetic who can control their very dangerous insulin levels based on their readings, you are not allowed to adjust your AIR?

BlackSpinner wrote:

FlyingMoose wrote:

bwexler wrote:Who cares if he sees that your changes work better than his.

I'm not concerned about that, I'm concerned that she'll be upset with me for changing the prescription without her permission.

It is air. Unlike a diabetic who can control their very dangerous insulin levels based on their readings, you are not allowed to adjust your AIR?

I dunno, they seem to think we're a bunch of yokels that have never so much as used a cell phone before...

Change your pressure. By yourself. We've all been doing it for years. And if the doctor's upset, get another one because he's acting like it's 100 yrs ago. Good doctors today encourage patients to be up on their situations, conditions, treatment, etc. and if they're not, they need to be fired. Why don't you get upset that he's acting like a jerk?

FlyingMoose wrote:I have been using the SlimLine tubing since I got my machine about a month and a half ago. ... So, I switched over to a full-size tube and it seemed to be an improvement. ...
But I'm considering setting the hose type wrong (setting to slimline even though I have a 22mm hose) since that won't show up as a change in the prescription.

mis-setting your hose type is not a good idea. you may as well just set your pressures to random numbers.

if you don't want to have slimline tubing, that's your choices, but unless you're using a bilevel at high pressure, slimline vs regular just doesn't matter.

I dunno, they seem to think we're a bunch of yokels that have never so much as used a cell phone before

My sleep doctor is not happy I have changed my pressure on my own. It is like I have cracked their secret language which is very threatening.

Do what you need to do to optimize your health and bleep the doctor.

49er

palerider wrote:if you don't want to have slimline tubing, that's your choices, but unless you're using a bilevel at high pressure, slimline vs regular just doesn't matter.

You may think that but I can certainly tell the difference. The slimline feels like I'm breathing through a straw. (This is with the correct setting for both hoses).

After letting the dr take care of my settings for a year. I don't care what they say I'll do what I need to do

Lowering the pressure is a reasonable experiment short term to try if you're having chest soreness. Watch the results and handle it if your numbers worsen that much, and if your soreness goes away. In theory, the machine will adjust upwards if needed.

The slimline hose shouldn't matter much, if any, as long as your machine is set to match. There's a "Tube" setting in the clinician's menu for hose size. Do you have the clinician's manual and know how to get into the clinical menu? I doubt setting the tubing size wrong makes that much difference anyway, but it's easy enough to get it right.

If you have a heated hose, the setting is automatic.

archangle wrote:The slimline hose shouldn't matter much, if any, as long as your machine is set to match. There's a "Tube" setting in the clinician's menu for hose size. Do you have the clinician's manual and know how to get into the clinical menu? I doubt setting the tubing size wrong makes that much difference anyway, but it's easy enough to get it right.

If you have a heated hose, the setting is automatic.

Actually it's in the user menu, you don't even have to go into the clinician's menu (although I do have the manual).

Even if it can calculate and correct the pressure for a given flow rate, with the higher pressures the impeller must spin faster and change speeds more quickly, so there is more lag associated with its momentum. With the slimline, it feels like it's not keeping up when I inhale.