Guest wrote:Den, with all due respect, please let us know what assessment you've made concerning MichelleFL's health. How much does she weigh? What's her lung capacity? Any admormal physical traits? What about whether central apneas or irregular breathing was presented in her past? Yes, I get it,,,it's HER healthcare. Why it is that she'd trust a forum full of strangers over her doctor is beyond me. She's obviously confused on many issues. Some doctors prefer to prescribe straight pressure just to see how it's tolerated (to confirm the PSG). But hey, according to you guys, it's just air. RestedGal--why don't you send her a provider's manual!
the dean (guest),
It is unfortunate that when diagosed with sleep apnea, even before you get your machine, you are not given enough vital information to know what to do and what not to do.
For example, If about 15% of people with sleep apnea are prone to develop central apneas from too high a pressure (which may not be that high for others),
should they not be told about this possibility before they start therapy? Please don't answer with "No one should be adjusting their own pressure." Most people can do this safely without any problems but apparently that 15% cannot. The problem isn't with people taking charge of their therapy with autos and software.
The problem is people aren't given this information before they start therapy.
The whole reason people even need to take charge of their therapy and, yes, adjust pressures until they are at the right pressure to eliminate obstructive apneas is because
we don't get the followup we need and are not given vital information in the beginning.
I trust some of the people on this forum more than I trust the doctor who was not in the least concerned at seeing clinical results of apneas getting worse, not better, over the first month and thereafter. He was not interested in even seeing more recent results with a more updated clinical software (the new sandman) that reveals centrals (cardiac oscillation) plus many cnt hypopneas. The apneas are still up and down and the obs hypopneas are few. He calls the clinical software "garbage." Needless to say, I will never see him again. I am finished with him and his clinic. He does not care about my health! I don't even want to believe that most clinics and doctors are not caring, but this guy just convinced me, that he doesn't really care. I do believe there are some doctors and dme staff that truly care, or maybe I still just want to believe that.
I shouldsaythat
one of the techs from the sleep clinic, did talk to me on the phone when I called him regarding getting my reports. When I told him I was titrating, he
did ask me if I had software that would detect centrals. I didn't at the time but have since gotten the sandman therapy software. He told me that if I am going to continue self titrating to leave pressure in same setting for at least a month so that your body can adjust to it. He also told me to send him monthly reports on how it is going. Too bad his boss wasn't as caring. It's his doctor boss (one of them) that says the software is garbage.
I want to make it clear that I began titrating after 3 months on cpap and noticing my apneas were so up and down and were much higher than when first titrated at the lab.
The dme sent the doctor a copy of the first month and he should have realized something was wrong since according to sleep records my apneas totalled only 8. So what is the point of waiting for a so called sleep doctor (if he even knows much about apneas) to help you when they (not all) don't really care.
When I first started titrating, on my own initiative, I didn't ask for help in how to do it. I just tried different pressures for a few days at a time. I screwed my self up worse.
I should have asked for help from someone from the forum before I began titrating, but I didn't. I trust someone who has experience firsthand having mixed apnea then I would anyone. That's why I feel safer on this forum than I do in the so called sleep doctor's office.
I think the techs who do the initial titration know who is prone to pressure induced centrals and the doctor reading the reports also knows. It should to be immediately made known to the client...before they start therapy. Why isn't it? Is it because the right machine would cost so much more than a cheap cpap and the dme and doc who gets a cut wouldn't make a profit? Sad when profit matters more than a person's health and safety. Maybe they don't tell you that you are prone to pressure induced centrals because they want us to get worse and warn everyone to not use software and autos. They will never stop people from wanting to be involved in their own therapy and they shouldn't punish people by ignoring their evidence of worsening AHI upon using cpap therapy, even at prescribed pressure for over 3 months.
I am upset with the doctor and the clinic for not letting me know about pressure induced centrals and even more so, that they could care less. Right now, my CA's are increasing and I am seriously thinking about stopping therapy all together so they don't get more worse. I don't know what to do and the doctor doesn't even care to know.
I will get another sleep study done in four or five months at a different sleep lab that has a different doctor. At that time, I will have plenty of information and will know what to ask and what type of machine I will need. I just think it is not right that someone has to wait so many months to be on the right machine to handle centrals or mixed apnea.
If it were not for the good folks of this forum, I would have given up a whole lot sooner. They are, apparently, the only ones who do care and understand.
One Tired Puppy
I know my grammar isn't perfect but hopefully, it is understandable.
