Changing your own pressure settings

Looking for some help from some experienced CPAPers.

I know my settings aren't getting me adequate results yet (even my doctor told me so). My average AHI is consistently ~15 with my pressure set from 6-10. I'm spending 50%+ of my sleeping time "pegged" at 10. So, it seems like I need more pressure. My sleep doctor stated that he won't increase my pressure while I have a sinus infection, and prescribed an antibiotic and referred me to my ENT.

My ENT stated that my sinus infection is chronic and won't go away without surgery (again), and told me not to fill me Rx for antibiotic, as it won't do any good.

I could go back to my sleep doc (for the 3rd time) at $75 a pop, or I could change my own pressure.

Those of you changing your own settings:

1) Do you tell your doctor your doing this or not?

2) If you're doing it without their knowledge, how (assuming they're downloading your data)? FYI, I've got a REMStar with SmartCard. I know I can pull the card out and play with settings, but them I'm going to have compliance holes in my data. I'm OK with not volunteering extra information to my doctor, but morally I refuse to lie (to anyone, for that matter).

3) Are most doctors OK with you changing your own settings if you call in advance to get their feedback or do they require you to make an appointment?

Any help would be appreciated.

Tridens (6 week newbie on APAP)

Triden,

Do you have the card reader and software to go with your machine? I did change my pressure settings without asking my doctor. I have the card reader and software and after studying the results for awhile, I decided I needed to increase my bottom pressure from 6 to 9 to get better treatment. I figured since I was upping the pressure, he would not have any problems with my doing so. I took a months data in on my next visit for him to see the results, which were better. When his assistant downloaded the info from the smart card, she noticed that the pressure had been changed and wanted to know who did it. I told her I did and was that a problem? She said I was not supposed to know how to change it, I ask why not, it's nothing but a glorified leaf blower and that diabetics were allowed to give themselves insulin shots at home but I wasn't allowed to change the air pressure blowing up my nose. To this she had no reply. My doctor on the other hand had no problem with me changing the pressure, was glad that I was taking an active role in my treatment and stated that it appeared I had everything under control. Come back in a year. I had no intention of lying to him nor did I try to hide anything.

Gilda

My sleep doctor stated that he won't increase my pressure while I have a sinus infection

I suppose there could be contraindications for using some pressure levels depending on the severity of the sinus infection and/or condition of the sinuses.

I upped mine but really have no intensions of going back to my Dr. No ins, my wife said that I was still breathing uneven and still snoring. I upped it by 1cm until she said that my breathing was even and snoring was minimal. I am at 12 now. My Dr did say that if I was on my back that I would need 15cm's. If you know it is not working, I see no reason not to change it. It's not like you have a broken arm and you are pulling the cast off. But the sinus inf is something to take into consideration. Is there a chance that more cm's will spread it? Is the Dr sure that the pressure it is at right now not going to spread it? Is he playing it safe and would it take 15-20 cm's to spread it? He may not even know, and is taking an educated guess(still a guess). After all, everyone reacts different to treatment and diseases, thats why they are practicing medicine. Ultimate result of sleep apnea, death. Ultimate result of sinus infection?Just a thought.

Toby

A sinus infection means you've got bacteria and pus in your sinuses.
An acute sinus infection can spread very far and deep and is not to be played around with.

Ultimate result of an acute sinus infection that spreads with or without the help of CPAP - very very bad.

This is from the Mayoclicnic.com diseases and conditions:about acute sinusitis

Serious complications from sinusitis are rare, but can be life-threatening. If the infection spreads beyond your sinuses, you may develop:

Meningitis. The infection may spread to the bones of your eyes or to the membranes that protect your brain (meninges), causing brain damage.
Vision problems. You may experience reduced vision or even blindness if the infection spreads to your eye socket.
Blood vessel complications. Infection that spreads to the veins around your sinuses can cause aneurysms and blood clots that interfere with the blood supply to your brain.

And here's info about chronic sinusitis
You don't trust a pulmonolgist who has seen you and diagnosed an acute sinus infection. You don't trust an ENT who has seen you and diagnosed a chronice infection.

If you don't trust your doctor/s get a second and third opinion from a qualified doctor you do trust.

You should not us on that issue, and the danger, if you make a mistake, is too big.

O.

Thanks, all.

Yes, I do have the Encore Pro software and reader. My data is a little hard for me to interpret right now (I'll probably start a separate thread for that).

I ended up calling my doc after I explained my sinus infection was chronic and wouldn't go away without surgery (which I'm scheduling). He agreed to up my pressure. When I told the nurse that I knew how to do it myself, but wanted his OK, he replied (through her) that "he understood I knew how to do it myself, but would prefer if the office or my DME changed it." I complied, but had to waste 1-1/2 hours to transport the machine for a change I could have done in 20 seconds or so at home.

I understand why they want to do it this way, but it sure seems ridiculous. Once I'm done with my periodic visits to the doc and get into a maintenance mode, I'll play with the settings on my own. Before then, though, I guess my CPAP will be taken for some car rides.

Thanks again for weighing in, everyone.

Tridens

Hi Tridens,
I'm glad your doc agreed to raise your pressure.
On the off chance that the doctor is simply playing it safe, and doesn't want to trust you word for it, that you know how to do it -
How about if on the "pressure raising" visit you make a big to do of watching, and even ask them to see if you're doing it properly?
He could be wanting more dollars, but he could also be just behaving responsibly - that fact that someone says the know how to do something doesn't necessarily mean they realy do...
Good luck
O.

Tridens wrote:...When I told the nurse that I knew how to do it myself, but wanted his OK, he replied (through her) that "he understood I knew how to do it myself, but would prefer if the office or my DME changed it." I complied, but had to waste 1-1/2 hours to transport the machine for a change I could have done in 20 seconds or so at home....

I'm wondering what the repercussions would be if you had then said, "I understand you prefer the office or DME change it, but it is ridiculous to waste 1-1/2 hours to transport the machine for a change I can do in 20 seconds at home, so I prefer to do it myself."

This has always been a huge issue. I guess it depends on the doctor, but it seems unfathomable he/she would approve a pressure increase ONLY if you didn't do it yourself. It just bugs me! If you were a diabetic you'd be testing your own blood, determining your insulin need, and injecting your own insulin, but heaven forbid a cpap-er adjust his own pressure...

My second cousin, who is a diabetic and has a pump, had a 90 minute (or more... I forget) appointmet set up in order to recieve intsruction on setting up the pump and using it. She was not given the pump, nor the permission to use before the hospital had made sure she knew how to do it.

This was in Switzerland.

Some doctors do behave out of a sense of real resposibility.
O.

All,

Ultimately, you are responsible for your own health care, despite our litigious society and propensity to hold EVERYONE ELSE responsible and suing the bastards. So, you should listen to your doctor and then get a second opinion. Then you should decide with which one you agree or choose neither and take the matter into your own hands. Personally, I chose to the latter after deducing that my doctor, the sleep study company, and the DME collectively don't give a rat's @$$ about me and just want my insurance company's (who, incidently doesn't care about me either) money. Tonight will be my seventh night on therapy NO THANKS TO ANY OF THEM!

But I'm not bitter. This is America and they're in it for a buck, right? I've been analyzing my data via Silverlining and tinkering with my gear. So far I've spent a few nights on APAP 4-20, one on CPAP 8 (as prescribed), two on APAP 4-13, and then with (as prescribed) and without heated humidity.

I am certainly not arrogant enough to consider myself an expert but I'm not and idiot either. This board has been tremendous in educating me such that I think I can make an intelligent decision. Paying someone a lot of money to do something simple enough for my pet hamster is not, to me, a good decision.

So I will manage my own leaf blower thank you very much. But as you've heard many here say before, what works for me may not for you.



Chuck

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, DME, APAP

Hey, I didn't know that xPAP machines also came in red!!! I wonder if I can get one of those from my DME...


While that was a joke, now that I've typed it out, I'm wondering how tough it would be for me to use that photo to convince my Doc (the same one who shook his head and admitted his ignorance when I handed him the reports I printed from Encore Pro/MyEncore), I needed a RX for a red xPAP machine...

I'm pretty sure I am still joking (been one of those days)...

CharlesJ wrote:All,


So I will manage my own leaf blower thank you very much. But as you've heard many here say before, what works for me may not for you.



Chuck

LOL

DSM

Good idea on asking the doc to "observe my CPAP button technique." At this juncture in my treatment, I've decided not to "rock the boat." My doc is very happy to accomodate my requests (changing machines, masks, etc.), and I don't want to lose that flexibility.

Also a good point that some docs see this as a responsibility issue and not a $ issue...I do think mine believes he's acting responsibly vs. making a buck. He wrote the prescription and faxed it to my DME to make the change, so he made no money in the deal (and the DME didn't charge me for their 30 seconds of "labor time" either.

I'm sure at some point I'll be done with my titration adjustment visits (only in about week 8 of CPAP), and then I can tweak until my heart's content.

Thanks all,

Tridens

Spam

Good afternoon all. I have an Electrical and Computer Engineer Degree and have been on CPAP for 13 years. So, I'm not an idiot who doesn't understand how to use Silverlining Software or figure out how to change settings on any CPAP. Yes, CPAPs are nothing more than glorified blowers. And yes, this is America and everyone is trying to take your money. Saying that, bottom line is that this is your health we are taking about. Establishing a good relationship with a DR. is a must. I know that incompetent Doctors and Home Healthcare Providers exist out there, but that is no excuse to play with medical devices. Granted, many of you might think they are glorified blowers, but they still fall under FDA Regulations. These Regulations were established to protect us, not annoy us. If you aren’t happy with them, then I suggest you just plug a leaf blower to your mask and be satisfy with that. Understand people, if you are not a doctor or medical provider, changing settings on a medical device is illegal. The liability falls on them. If you take it upon yourself to be a doctor, then it falls on you. If this so call leaf blower harms you in anyway, then you are fault. Ultimately, you are damaging your health. I know that many of you hate driving 1 ½ hours away to make a setting change, but it’s your health. Is that not worth it? If you have to drive a 1 ½ away, then I take it there is no hospital around you too? Have you considered moving near a medical facility? Common sense tells me that these folks are farmers or ranchers, but unfortunately that is life. It’s your chose to live with CPAP which falls under all these FDA Regulations. Being Proactive and Stubborn are two different issues. You folks are giving CPAP users a bad name. It bothers me to know that there are many ignorant people out there that like to self diagnose themselves. The same people who try to fix electronic devices and get electrocuted. Lets stop complaining about the system and deal with it. I get frustrated too with the insurance folks and home healthcare providers too. But it’s not their fault that these laws exist. They exist to protect us, not take our money away. If you don’t like the laws, then talk to all the other people who have lost lives due to faulty medical devices in the early 1900s. Educate yourselves and stop giving our doctors and home healthcare providers a hard time.