I totally understand where you are coming from. It's been 18 months on CPAP and it's been pretty bad most of the time.
I have tried everything I can think of. Experimenting. Almost everything works for at least a couple nights. Then it stops helping.
I keep using the CPAP because even though it's a lousy experience on a nightly basis, I haven't come up with anything better.
I know I will get lanced, but I too, don't appreciate the sarcastic responses. I haven't been on the forum for awhile, but I know that I would have given up if it weren't for the help and support I've gotten from the people on this forum. I was ready to toss the machine almost a year ago, but I stuck with it because of the information I got here.
Off CPAP for Now...New Experiment
Re: Off CPAP for Now...New Experiment
I have used an oximeter several times both on and off CPAP while hospitalized for another issue. My levels remained in the 90s. During the original diagnostic sleep study 3 years ago my average oxygen saturation was 96.3% and with CPAP 97.6%. The lowest desaturation was 84.4% without CPAP and 84.9% with CPAP. I am sure my sinus bradycardia contributed to that latter event.
The point in all this is a challenge to any 'professional' out there to not shrug their shoulders when presented with a subject who has a thin face and for whom a FF mask has not worked. They frown on the use of tape as being 'unsafe' which I frankly disagree with. At any rate, the search for a different physician and sleep study analysis has been on for a couple months now. Since a lot of what is posted here is based on subjective assessment as well as any pre-sleep study evaluation with all the forms once has to fill out, this is just an attempt on my part to try things no 'professional' has ever suggested. Certainly the use of paper tape was learned from this bulletin board as well as reading the posts from many 'professionals' who frowned at the use of tape based on what they thought they knew as to what they really know. I respect all opinions and that was the main reason for posting this thread as well as to perhaps find someone from the SW part of Florida who could recommend a sleep 'doc' or facility who will be there to suggest solutions that respond to specific issues and not recommend a 'one size fits all' for those with sleep apnea.
The point in all this is a challenge to any 'professional' out there to not shrug their shoulders when presented with a subject who has a thin face and for whom a FF mask has not worked. They frown on the use of tape as being 'unsafe' which I frankly disagree with. At any rate, the search for a different physician and sleep study analysis has been on for a couple months now. Since a lot of what is posted here is based on subjective assessment as well as any pre-sleep study evaluation with all the forms once has to fill out, this is just an attempt on my part to try things no 'professional' has ever suggested. Certainly the use of paper tape was learned from this bulletin board as well as reading the posts from many 'professionals' who frowned at the use of tape based on what they thought they knew as to what they really know. I respect all opinions and that was the main reason for posting this thread as well as to perhaps find someone from the SW part of Florida who could recommend a sleep 'doc' or facility who will be there to suggest solutions that respond to specific issues and not recommend a 'one size fits all' for those with sleep apnea.
Re: Off CPAP for Now...New Experiment
I fully respect your situation and obviously I can relate. I am a cynic as my posts may indicate but I have seen several DMEs and respiratory therapists who have not helped and who subscribe to the 'one size' mentality. As a retired health professional myself I am well aware of the need for patients to comply with any treatment modality but this 'sleep' thing is a racket for some people and I am not one to mince words. Right now I can name several places in SW Florida where I have been told, "you are a unique case"...."I would not use tape for any reason"..."I guess there is no mask that will work for everyone." Well, I am not "everyone" any more than you are. I wish you the best and feel free to contact me directly.OCNorsk wrote:I totally understand where you are coming from. It's been 18 months on CPAP and it's been pretty bad most of the time.
I have tried everything I can think of. Experimenting. Almost everything works for at least a couple nights. Then it stops helping.
I keep using the CPAP because even though it's a lousy experience on a nightly basis, I haven't come up with anything better.
I know I will get lanced, but I too, don't appreciate the sarcastic responses. I haven't been on the forum for awhile, but I know that I would have given up if it weren't for the help and support I've gotten from the people on this forum. I was ready to toss the machine almost a year ago, but I stuck with it because of the information I got here.
Thanks for your post.