New with questions

[harlleycow]

I posted this awhile back, and now I've added machine, headgear and humidifier. Thanks for any help -- I really need it.

Hi,
I'm new to the CPAP discussion group. I received my machine about 3 weeks ago and I think I'm doing well. I've been able to keep in on for at least 4 hours a night, and one night, the entire night. The last couple of nights it seems as though I'm not getting enough air so I end up taking the mask off.

I called the supply company asking if I can change the setting. I'm at 8. They said no, only with a doctor's order. I called the doctor's office and they said wait until my appointment (the 25th) and the doctor will look at it. I guess I don't understand why the user can't adjust the machine. Is there any harm that can be done if the setting is too high? I would think there's more harm in not wearing it.

Also, I was told by the supplier that I can only get replacements for masks, tubing, etc. with a doctor's order. That just doesn't seem righ either.

I've seen some talk in the discussion boards about a card reader. Should I get one? What will it do for me?

I need some advice on what I should and shouldn't be able to do and what I should ask for when I see the doctor.

Thanks for any help.

[Joffive]

Do you have the ramp feature turned on? If so, are you waking up for some reason other than not getting enough air and then turning it back on with the ramp working it's way up from a pressure of 4?
I'm sure somebody who knows more will jump in here, but that's one of the possibilities for not getting enough air...

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CPAPopedia Keywords Contained In This Post (Click For Definition): Ramp

[Wulfman]

I posted this awhile back, and now I've added machine, headgear and humidifier. Thanks for any help -- I really need it.

Hi,
I'm new to the CPAP discussion group. I received my machine about 3 weeks ago and I think I'm doing well. I've been able to keep in on for at least 4 hours a night, and one night, the entire night. The last couple of nights it seems as though I'm not getting enough air so I end up taking the mask off.

I called the supply company asking if I can change the setting. I'm at 8. They said no, only with a doctor's order. I called the doctor's office and they said wait until my appointment (the 25th) and the doctor will look at it. I guess I don't understand why the user can't adjust the machine. Is there any harm that can be done if the setting is too high? I would think there's more harm in not wearing it.

Also, I was told by the supplier that I can only get replacements for masks, tubing, etc. with a doctor's order. That just doesn't seem righ either.

I've seen some talk in the discussion boards about a card reader. Should I get one? What will it do for me?

I need some advice on what I should and shouldn't be able to do and what I should ask for when I see the doctor.

Thanks for any help.

I would feel starved for air at a setting of 8 cm., too.
Your equipment provider (DME) supposedly can't legally change your prescription setting without a doctor's order......but that doesn't mean YOU can't. There are NO laws that prevent you taking control of YOUR therapy.

Your profile shows you have the S8 Elite which is a data capable machine and most of the summary data is available from the LCD screen.

Below are some instructions for the S8 machines.
Downloadable files can be had from the bottom of the page at this link:

http://www.cpap-supply.com/Articles.asp?ID=130

You have to get the data from the LCD screen before Noon.

Good luck.

Den


While pressing the Down arrow button, press and hold down the right hand button. Hold both buttons down together for several seconds.

That brings up the "Welcome" clinical menu.

Use the up/down button to navigate to the settings menu.

Use the left button to "Change" settings. A "Change" will not be saved until you hit the left key again under the word "Apply".

It's safe to walk through the changes just to see what they would be. When looking at a "Change" setting, the up/down arrow buttons will scroll through the possible changes of that setting. As long as you don't press the left button under the word "Apply", no change will actually happen. If you want to back out of the "Change" without changing the setting, press the righthand button under the word "Exit."

Use the right button under the word "Exit" to go backwards from whatever menu section you're in. Hit "Exit" several times to exit your way backwards completely out of the clinical menu.

[harlleycow]

Thanks or replying. No, I have the ramp feature turned off. I also have the EPR turned to 1. When I do wake up to go to the washroom, I don't shut the machine off. I don't know if that's good or bad. The air coming out of the mask when I'm not wearing it seems very good, but as soon as I have it on, I don't feel a thing. I can talk with the mask on which the CPAP tech told me I would not be able to do. I have no leaks, the reading says excellent, so I'm at a loss. Maybe this is the way it's supposed to feel, but in my sleep study, I felt a lot more air blowing in my mouth.

After reading quite a lot of the messages in the forum, there's so much I don't know that it's frightening. I did sit with the CPAP tech in their office but I was just getting the machine so I didn't know what I should be asking about. I've called her a couple of times but all she tells me is that I can't adjust the machine myself, only on doctor's orders. Then she'll send me a "card" that somehow will adjust it. I just found out today in one of the messages what HI, AI AND AHI mean, but I don't know how I find that out. They turned me loose with a machine and expect me to find out how it works, when I don't really know what it should be doing.

I only met the sleep doctor once and wasn't impressed. When he came in to the exam room, he asked me why I was there. He hadn't even read my chart! I see him at the end of the month and I'm hoping for better results. I'm learning more here than from him or the CPAP tech!

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, AHI, Ramp

[Wulfman]

Yeah, it IS pretty frightening at first......till you actually take control of your own therapy and become "enlightened".

Do NOT let your machine run while you're taking a trip to the bathroom. Shut your machine off before taking your mask off......otherwise it'll screw up your leak data.

Welcome to the forum. Do lots of reading and you'll be just fine.

Den

[harlleycow]

Wulfman,

THANK YOU, THANK YOU, THANK YOU!

I've printed out everything and will try to change the settings tomorrow and also get readings. If you think 8 would make you starved for air, I wonder why they set it at that for me.

During my sleep study, they said I stopped breathing 37 times an hour and my sleep was disruppted another 17 times an hour by my snoring. I'm anxious to get a good night's sleep.

I guess I've really screwed up the readings by leaving the machine run when not on. It would have been nice if the tech had told me that. I'm learning slowly but surely!

Thank you too, Joffive!

[Wulfman]

Wulfman,

THANK YOU, THANK YOU, THANK YOU!

I've printed out everything and will try to change the settings tomorrow and also get readings. If you think 8 would make you starved for air, I wonder why they set it at that for me.

During my sleep study, they said I stopped breathing 37 times an hour and my sleep was disruppted another 17 times an hour by my snoring. I'm anxious to get a good night's sleep.

I guess I've really screwed up the readings by leaving the machine run when not on. It would have been nice if the tech had told me that. I'm learning slowly but surely!

Thank you too, Joffive!

Well, IF you were properly titrated......or for someone who IS......the pressure is determined by the amount that will keep your airway open.

In my situation, I was titrated at 16 and my doctor added two more......writing my prescription for 18 cm. With a machine that gave me the data to monitor my therapy (REMstar Pro 2) and the software, I reset my machine at 10 to see how that would work (18 was WAY too much for me to be comfortable). It actually worked pretty good and it was not until a year later that I finally bumped my pressure up to 11 and then 12.....where I've been ever since. (The extra pressure helped kill my snoring)

Den

[alnhwrd]

I have the Elite, and it has a "Smart Start/Stop" feature. This turns the machine on when I breath into it, and off about five seconds after I disconnect from it. That way you don't have to fumble around in the dark for the on/off switch at night. If you are changing settings, you might turn this feature on. Also, I would write down all of your orignal settings before changing any of them. That way you can change back anything you don't like.

[Wulfman]

I have the Elite, and it has a "Smart Start/Stop" feature. This turns the machine on when I breath into it, and off about five seconds after I disconnect from it. That way you don't have to fumble around in the dark for the on/off switch at night. If you are changing settings, you might turn this feature on. Also, I would write down all of your orignal settings before changing any of them. That way you can change back anything you don't like.

That's still five seconds of indicating a LARGE LEAK. Also, if you are a shallow breather, it might shut down on you during the night. Also, if your mask gets skewed and you have a large leak during the night, it may very well shut your machine down (when you need it to keep blowing air).

If using a full face mask like the Ultra Mirage or Quattro, the Smart Start is automatically disabled by the mask selection.
The "Auto Off" feature should be turned OFF.

Den

[Country4ever]

Hi,
I'm fairly new at this too (6 months), and I can only say my experience.
First, I know that alot of people on this forum make their own changes and are fairly aggressive about their treatment and being involved in it. But I have to say that when you're new at this, I don't feel you should be changing your settings. I don't know if your sleep doc is the only one in town, but right now, he's the only one you have, and I don't think you should tick him off.....just yet. If you really knew what you were doing (and that will take a little time), THEN you could get ticked off at him and make your own changes.
I'm in no way saying you shouldn't be charge of your treatment. But you're very new at this, you don't want to be screwing yourself over by being overly confrontational and changing your own settings without even talking to the doc about the problems you're having.
Is there any way you could get in to see him sooner? Could you call his office and say there's no way you can wait until the end of the month to resolve this problem?
I started out on APAP settings of 4 and 8, and I had no problems at 4, feeling like a couldn't get air. I think we're all VERY different in how different settings affect us, and we can't make assumptions based on others' settings.
Something seems to not be right for you, and you'll figure it out, but I feel you should try to be a compliant patient.......until you become more familiar with the machine and the experience.
I hope you experts don't get ticked off at what I'm saying. I just don't want Harlleycow to get alienated from his/her doc so early in the game and be in an even worse spot.

[cflame1]

Country,
Even if there are more than 1 doc in the area that you can go to... if you don't take charge of your own care... the doc's not even going to care. That's how people fail in this treatment.

A lot of us never even met the sleep doc that read the study (that's what my initial study was like). With me, for the longest time the only help that I got for treatment was from here.

If a person decides, and has the right equipment (and data) to make an educated decision, to change their own pressures, then let them. It doesn't matter if they'll tick off their sleep doc or not, or if they've only been at it a short time.

[harlleycow]

Thanks for all the input. I don't want to tick the doc off either but I know some of my other docs like the fact that you become an informed patient. I tried to talk to the doc but the front office just won't put me through. In fact, they told me to wait until I see him for a change in the pressure. I told them I didn't feel as though I was getting air and wasn't using it because of that. That didn't seem to make a difference.

My feeling is that the doc/staff and the CPAP tech should have covered quite a lot of the facts that I'm reading in this forum. They could certainly give out some type of info sheet that describes what the first time user might encounter and then what to do about it. If I hadn't found this website, I'd really be at a loss of what to do.

I don't see what pumping my pressure up a point or two would hurt. If it's too high, I could then put it back and go from there. I don't believe you always need a middleman (CPAP tech) when I'm perfectly able to do the same. It just costs me and my insurance company money. I'll find a nice way to tell that to the doc and also about his staff when I finally get to see him and see what he says. Maybe I'll have to find another sleep doc.

I am certainly learning a lot from this website!