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Permalink Reply by Mary Callahan on December 10, 2010 at 4:05pm

Rock Hinkle: I have adjusted the pressure myself (as someone suggested) and finding it a little easier to breathe. It was set from 4-15. The 4 was to ramp to 5 after 45 minutes. I shut off the ramp and raised the pressure to 5.6 and lowered the higher pressure from 15 down to 11.6. The last 3 nights I was much better able to tolerate the machine. However, I am still not sleeping deeply, as each day I am more exhausted than before. Today I had to ride from LI to Upstate NY for a doctor's appt, and I thought for sure I would have an accident. I kept talking to myself to keep me awake. I made it back okay, but I am not liking this at all. Well one week down, and 3 more to go. Maybe in time this will improve.

 

My numbers are coming down so I am sure I did the right thing. Having a lot less apneas, but it seems they are all central apneas. Strange! The pressure is between 7.5 & 8. 

 

Thanks again for all your help. Wouldn't have made it this far without the comments and suggestions from all the support forum community!

Rock Hinkle said:

This is the problem with the auto-titration process. Thirty days to refine the pressure range, then another 30 to find optimal pressure. Sixty days is just to long when the goal of a titration is immmediate improvement in sleep efficiency. This process will put even more PAP units in the closet.

 

Mary I am glad that you are being pro-active.

Mary Callahan said:

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Permalink Reply by RockRpsgt on December 10, 2010 at 7:00pm

Mary, This question will probably raise some debate. Did you communicate with your PCP before changing your pressures? I ask this because there needs to be a bond of trust between you and your sleep team. Now this works both ways. we have to trust that our docs are going to do the right thing as well. I also question anyone suggesting that you change your pressures without knowing the source of the centrals. The people on this site do not know your medical history.

 

 Some will say that I am saying this to promote fear. Others will say that I am trying to protect my job. The truth of the matter is that I want you to get the best treatment possible. Good luck.  

Mary Callahan said:

Rock Hinkle: I have adjusted the pressure myself (as someone suggested) and finding it a little easier to breathe. It was set from 4-15. The 4 was to ramp to 5 after 45 minutes. I shut off the ramp and raised the pressure to 5.6 and lowered the higher pressure from 15 down to 11.6. The last 3 nights I was much better able to tolerate the machine. However, I am still not sleeping deeply, as each day I am more exhausted than before. Today I had to ride from LI to Upstate NY for a doctor's appt, and I thought for sure I would have an accident. I kept talking to myself to keep me awake. I made it back okay, but I am not liking this at all. Well one week down, and 3 more to go. Maybe in time this will improve.

 

My numbers are coming down so I am sure I did the right thing. Having a lot less apneas, but it seems they are all central apneas. Strange! The pressure is between 7.5 & 8. 

 

Thanks again for all your help. Wouldn't have made it this far without the comments and suggestions from all the support forum community!

Rock Hinkle said:

This is the problem with the auto-titration process. Thirty days to refine the pressure range, then another 30 to find optimal pressure. Sixty days is just to long when the goal of a titration is immmediate improvement in sleep efficiency. This process will put even more PAP units in the closet.

 

Mary I am glad that you are being pro-active.

Mary Callahan said:

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Permalink Reply by Mary Callahan on December 10, 2010 at 9:19pm

Rock Hinkle, no I did not discuss it first with my sleep doc (PCP is out of the picture at this point). When I was having all that trouble breathing I called his office, and he did not call back, although an assistant did. But he offered no advice, and just said I had to get used to it. Everything I asked, he just said you have to get used to it.

I did not change the pressure because of the centrals, I changed it because I could not breathe. If I had not changed it (and I don't think I changed it that much), I would have returned the machine to the DME, who was also useless in helping me when I spoke with him (his pat answer was the same as the sleep doc-you need to get used to it.

I think I did the right thing for me. And so I continue to use the machine. Do you think on Monday I should call the sleep doctor and see what he says about the centrals and the pressure change? After all, we aren't supposed to know how to garner the information on the machine, as they take the manuals out of it before giving it to us. And I am supposed to wait a month before he gets the info from the DME. Thanks and let me know what you think.

Rock Hinkle said:

Mary, This question will probably raise some debate. Did you communicate with your PCP before changing your pressures? I ask this because there needs to be a bond of trust between you and your sleep team. Now this works both ways. we have to trust that our docs are going to do the right thing as well. I also question anyone suggesting that you change your pressures without knowing the source of the centrals. The people on this site do not know your medical history.

 

 Some will say that I am saying this to promote fear. Others will say that I am trying to protect my job. The truth of the matter is that I want you to get the best treatment possible. Good luck.  

Mary Callahan said:

Rock Hinkle: I have adjusted the pressure myself (as someone suggested) and finding it a little easier to breathe. It was set from 4-15. The 4 was to ramp to 5 after 45 minutes. I shut off the ramp and raised the pressure to 5.6 and lowered the higher pressure from 15 down to 11.6. The last 3 nights I was much better able to tolerate the machine. However, I am still not sleeping deeply, as each day I am more exhausted than before. Today I had to ride from LI to Upstate NY for a doctor's appt, and I thought for sure I would have an accident. I kept talking to myself to keep me awake. I made it back okay, but I am not liking this at all. Well one week down, and 3 more to go. Maybe in time this will improve.

 

My numbers are coming down so I am sure I did the right thing. Having a lot less apneas, but it seems they are all central apneas. Strange! The pressure is between 7.5 & 8. 

 

 

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Permalink Reply by RockRpsgt on December 11, 2010 at 2:09am

Right or wrong is not for me to say. I do not support auto-titration for this very reason. This type of therapy is a tough road to walk. I am glad that you found sleepguide. I am also very happy that you have been able to make improvements on your therapy despite your teams lack of interest. I would attempt to contact both your physician and DME again. If you get the same response I would fire them both. There are just too many people in the medical industry that would enjoy a refreshing patient like yourself.

 

My statement was not questioning you on whether or not you changed your pressures due to the centrals. I was questioning the advice given to you without knowing the source of the centrals. More than likely your centrals are being caused by the auto mode titrating to high. What if it were something more serious? I personally would not want some anonymous name on the internet giving me advice. Just saying be careful and research every decision to the fullest.  

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