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Rock,
It wasn't my call. I missed all the signs. I'm new to this stuff myself and am only a patient. I was only passing along something sent to me in a private message by someone else.
Connie,
You're breaking my heart here. I wonder if your sleep doc would help you try doing the straight CPAP thing again with a data-recording machine at a relatively low pressure and the new LT for Her mask. (In my opinion, it is the next best thing to not wearing a mask at all.) If tolerating the mask is more the issue than tolerating CPAP, my suggestion would be cognitive behavior therapy (CBT) if you aren't able to slowly acclimate yourself to using the mask on your own, a little at a time, until your body/mind craves it instead of fearing it. Some wear it sitting around watching television or reading while awake to get the brain used to the idea of the mask, for example.
If your sleep doc sees the need after that to treat you using a machine designed specifically for CompSAS (which seems likely), you can cross that bridge when it comes. But in my opinion as a fellow patient, you REALLY need to find a way to tolerate the mask, and I believe you can do it with enough effort, patience, education, focus, and help. You are worth it. And you may be amazed, just maybe, at how a lot of things can turn around (not all, but some) once you start getting better sleep and more O2 at night by means of PAP therapy--either with your body/brain adjusting to CPAP or with eventually getting set up on an SV machine adjusted to address your specific needs.
In my opinion, a regular OSA sufferer may get by for a long time without PAP therapy. But given your other conditions, I don't think you have the option of rejecting the mask. You, particularly, need some sleep and O2. Please, do me a favor, and don't give up on PAP therapy. Find a way to do whatever it takes to resolve to make friends with the mask. That mask may be the very thing that saves your life. If you start out with the LT mask and get used to that, it may then be a small step up to a good full-face mask with an SV machine. And I have a feeling that once your brain/body experiences what a night on an SV machine feels like, it will never make you feel like ripping a mask off again. Please do whatever it takes to find out by at least giving that the full shot one more time!
There are plenty of people to help you do that, in cooperation with your doctors, here and in other forums.
I'm begging you here!
jeff
Rock,
It wasn't my call. I missed all the signs. I'm new to this stuff myself and am only a patient. I was only passing along something sent to me in a private message by someone else.
Connie,
You're breaking my heart here. I wonder if your sleep doc would help you try doing the straight CPAP thing again with a data-recording machine at a relatively low pressure and the new LT for Her mask. (In my opinion, it is the next best thing to not wearing a mask at all.) If tolerating the mask is more the issue than tolerating CPAP, my suggestion would be cognitive behavior therapy (CBT) if you aren't able to slowly acclimate yourself to using the mask on your own, a little at a time, until your body/mind craves it instead of fearing it. Some wear it sitting around watching television or reading while awake to get the brain used to the idea of the mask, for example.
If your sleep doc sees the need after that to treat you using a machine designed specifically for CompSAS (which seems likely), you can cross that bridge when it comes. But in my opinion as a fellow patient, you REALLY need to find a way to tolerate the mask, and I believe you can do it with enough effort, patience, education, focus, and help. You are worth it. And you may be amazed, just maybe, at how a lot of things can turn around (not all, but some) once you start getting better sleep and more O2 at night by means of PAP therapy--either with your body/brain adjusting to CPAP or with eventually getting set up on an SV machine adjusted to address your specific needs.
In my opinion, a regular OSA sufferer may get by for a long time without PAP therapy. But given your other conditions, I don't think you have the option of rejecting the mask. You, particularly, need some sleep and O2. Please, do me a favor, and don't give up on PAP therapy. Find a way to do whatever it takes to resolve to make friends with the mask. That mask may be the very thing that saves your life. If you start out with the LT mask and get used to that, it may then be a small step up to a good full-face mask with an SV machine. And I have a feeling that once your brain/body experiences what a night on an SV machine feels like, it will never make you feel like ripping a mask off again. Please do whatever it takes to find out by at least giving that the full shot one more time!
There are plenty of people to help you do that, in cooperation with your doctors, here and in other forums.
I'm begging you here!
jeff
CB,
This is one of the masks that is "barely there":
http://cpap.com/productpage/resmed-swift-fx-nasal-pillow-cpap-mask-...
Cognitive Behavioral Therapy is the therapy that seems to help the most:
http://respiratory-care-sleep-medicine.advanceweb.com/Article/Cogni...
I hope that helps. I am glad you are still going at it.
Please ask more questions if you need to.
jeff
ps- Thanks to Judy for PMing me, so that I saw this latest post, so I was able to post this while on vacation in KY. :-)
Connie B said:I finally found a doctor in my own back yard who made a mouth device for my sleep apnea the difference in my sleep study was amazing. I am also getting better about sleeping on my back. The doc who designed and fitted my mouth devised and treats my TMJ feels that I should also eventually wear CPAP with my device. For the best results possible. However they still do not understand why when they increase the pressure of the CPAP my O2 stimulus to breathe decreases. I wanted to know if you would give me the full name of the mask you were suggesting and the type of behavior modification everyone is talking about. The sites you listed is this where I can find this information? Thanks.
j n k said:Rock,
It wasn't my call. I missed all the signs. I'm new to this stuff myself and am only a patient. I was only passing along something sent to me in a private message by someone else.
Connie,
You're breaking my heart here. I wonder if your sleep doc would help you try doing the straight CPAP thing again with a data-recording machine at a relatively low pressure and the new LT for Her mask. (In my opinion, it is the next best thing to not wearing a mask at all.) If tolerating the mask is more the issue than tolerating CPAP, my suggestion would be cognitive behavior therapy (CBT) if you aren't able to slowly acclimate yourself to using the mask on your own, a little at a time, until your body/mind craves it instead of fearing it. Some wear it sitting around watching television or reading while awake to get the brain used to the idea of the mask, for example.
If your sleep doc sees the need after that to treat you using a machine designed specifically for CompSAS (which seems likely), you can cross that bridge when it comes. But in my opinion as a fellow patient, you REALLY need to find a way to tolerate the mask, and I believe you can do it with enough effort, patience, education, focus, and help. You are worth it. And you may be amazed, just maybe, at how a lot of things can turn around (not all, but some) once you start getting better sleep and more O2 at night by means of PAP therapy--either with your body/brain adjusting to CPAP or with eventually getting set up on an SV machine adjusted to address your specific needs.
In my opinion, a regular OSA sufferer may get by for a long time without PAP therapy. But given your other conditions, I don't think you have the option of rejecting the mask. You, particularly, need some sleep and O2. Please, do me a favor, and don't give up on PAP therapy. Find a way to do whatever it takes to resolve to make friends with the mask. That mask may be the very thing that saves your life. If you start out with the LT mask and get used to that, it may then be a small step up to a good full-face mask with an SV machine. And I have a feeling that once your brain/body experiences what a night on an SV machine feels like, it will never make you feel like ripping a mask off again. Please do whatever it takes to find out by at least giving that the full shot one more time!
There are plenty of people to help you do that, in cooperation with your doctors, here and in other forums.
I'm begging you here!
jeff
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