Don't know what to do next, if anything.

I am very frustrated and don't know what to do next. I've been on cpap since November of '08. My original pressure setting was set to 10 cm. I have an Elite II so I can check my data each day and I also just recently got Rescan 3.10 and a card reader so I can check it even more in depth. My Ahi's have been between 10 and 20, my ai's have been .4 to as high as 3.5 per hour. I have gone up to a pressure of 12 for a little while and my numbers have seemed to get a little bit better. I still however feel tired all the time. I have gone to my doctor numerous times about this. She says that my pressure of 10 is perfectly adequate to treat my apnea. A couple weeks ago, she set up another sleep study for me. I went to my sleep study, and the results also showed a pressure of 10 was adequate and nothing should change as far as my treatment. However, on my machine, my numbers are better on a pressure of 12. But seeing that my sleep study showed a pressure of 10, I can't up my pressure "legally." So I guess, my question is: Can my machine data be that different as opposed to my sleep study data? I know the sleep study data is more accurate but my machine consistantly has better readings for me at higher pressures. If I get better treatment at a higher pressure, I'm going to have it at a higher pressure regardless of what my doctor says. Last night, I went back to a pressure of 10 like I was prescribed and my results were an AHI of 15.9, and an AI of 3.3. Does that sound like my apneas being treated? On a pressure of 12, my results have lately been AHI's around 8-12, and ai's around 1.5. Part of the problem with my doctor is that she knows I can set my own pressure and she doesn't like that. She has an instant attitude with me before she even sees me. I just don't know what to do. She did write me out a prescription for an APAP but she said that they can not sell me one because I had just bought one a Resmed Elite II a year and a half ago. She said that I could call my insurance and see if they would pay for one and then if they would, I could go off the internet to buy one. She didn't think that an APAP would give me any more of an advantage but she wrote one out for me anyway. Right now, I just don't know what to do. Should I just keep my pressure at 10 like I'm suppose to and get not so good numbers or up my pressure and get better numbers like I'm suppose to be getting? If I had an APAP, I wouldn't have to worry about it. The pressure would be right for me. With what I got now, if I up my pressure to 12 to get better numbers than I would be going against my doctor's judgement and I would have to answer to her everytime I see her. She is a very mean doctor.

This is not meant as a smarta$$ answer, but, could you switch doctors? Maybe ask here on the forum to see if anyone in your immediate area has a better suggestion fo a sleep specialist?

Whatever happens, good luck!

Cheers,

Dave

Good idea!! I am in the Twin Cities, Minnesota area.

Jason1975 wrote:I am very frustrated and don't know what to do next. I've been on cpap since November of '08. My original pressure setting was set to 10 cm. I have an Elite II so I can check my data each day and I also just recently got Rescan 3.10 and a card reader so I can check it even more in depth. My Ahi's have been between 10 and 20, my ai's have been .4 to as high as 3.5 per hour. I have gone up to a pressure of 12 for a little while and my numbers have seemed to get a little bit better. I still however feel tired all the time. I have gone to my doctor numerous times about this. She says that my pressure of 10 is perfectly adequate to treat my apnea. A couple weeks ago, she set up another sleep study for me. I went to my sleep study, and the results also showed a pressure of 10 was adequate and nothing should change as far as my treatment. However, on my machine, my numbers are better on a pressure of 12. But seeing that my sleep study showed a pressure of 10, I can't up my pressure "legally." So I guess, my question is: Can my machine data be that different as opposed to my sleep study data? I know the sleep study data is more accurate but my machine consistantly has better readings for me at higher pressures. If I get better treatment at a higher pressure, I'm going to have it at a higher pressure regardless of what my doctor says. Last night, I went back to a pressure of 10 like I was prescribed and my results were an AHI of 15.9, and an AI of 3.3. Does that sound like my apneas being treated? On a pressure of 12, my results have lately been AHI's around 8-12, and ai's around 1.5. Part of the problem with my doctor is that she knows I can set my own pressure and she doesn't like that. She has an instant attitude with me before she even sees me. I just don't know what to do. She did write me out a prescription for an APAP but she said that they can not sell me one because I had just bought one a Resmed Elite II a year and a half ago. She said that I could call my insurance and see if they would pay for one and then if they would, I could go off the internet to buy one. She didn't think that an APAP would give me any more of an advantage but she wrote one out for me anyway. Right now, I just don't know what to do. Should I just keep my pressure at 10 like I'm suppose to and get not so good numbers or up my pressure and get better numbers like I'm suppose to be getting? If I had an APAP, I wouldn't have to worry about it. The pressure would be right for me. With what I got now, if I up my pressure to 12 to get better numbers than I would be going against my doctor's judgement and I would have to answer to her everytime I see her. She is a very mean doctor.

You know what the definition of "insanity" is.......doing the same thing over and over again and expecting different results.

I hate to sound rude, but this sleep doctor isn't doing you any good. YOU need to take control of YOUR therapy.

One thing you didn't mention is whether you're using EPR. You should know by now (if you've read anything on this forum) that the EPR setting drops your pressure on exhale by that number of centimeters. So, if you're using a pressure of 10 and you have an EPR setting of "3", you're only getting an "effective" pressure of "7" on exhale.......and for some people, they experience apneas on the end of the exhale cycle.
And, if you're using EPR, THAT could be why they see your effective pressure of "10" and you do not.
Turn off EPR and Ramp (if you're using that) and see what happens. If that still doesn't do it, bump your pressure up to where you see your numbers REALLY drop. If you feel that you HAVE to have EPR, then you need to raise your pressure to compensate for that drop. So, if you use a pressure of 10 and an EPR setting of 3, then you need to raise your pressure to 13 to still keep that pressure of 10 on exhale.

Like I said......YOU need to take control of YOUR therapy. Keep reading, asking questions and learning. Otherwise, your "medical professionals" will keep sucking money out of you and your insurance.

Edit: Having an APAP would only give you WORSE numbers than you're seeing now. A ResMed S8 APAP won't pursue apneas above the pressure of 10 cm. without preceding events......due to their algorithm.


Den

I agree, it sounds like the first thing you need to do is find a NEW doctor. You're not getting good results from your therapy, and your doctor is not listening to you.

One thing is that you might ask the DME to calibrate and service your machine--perhaps it's not delivering the proper pressure.

If your insurance won't pay for an APAP now, check online DME's and the auction site and you may be able to pick one up for a reasonable cost--especially if you can then turn around and sell your present machine. That will allow you to do some auto-titration--you can set the upper limit of pressure higher and see what happens. But it would be best to do this under the supervision of a doctor who will work with you as a member of your health team, instead of a doctor who doesn't trust you to make informed decisions about your own health care.

Thanks so much you guys for the responses!!! Wulfman, thanks for the titration tips!! I forgot to mention that my Mom got the new Resmed S9 Auto and I had used it for a couple of nights. I had my min pressure set at 9 and max pressure set at 20. My 95th percentile said my pressure was 12.1 and max pressure was 13.2.

On my Elite II, I've had my EPR set to 3 both at pressures of 12 and 10. Perhaps tonight I should have no EPR with a pressure of 10 and see what happens.

Is there a reason you haven't tried a FF mask just in case you mouth breathe when sleeping, and lose all the Cpap air?

Julie wrote:Is there a reason you haven't tried a FF mask just in case you mouth breathe when sleeping, and lose all the Cpap air?

My leaks are pretty well under control with my Swift LT. I have tried ffm in the past and do not care for them. I figure, if I don't need them, why get them and be uncomfortable?