"please keep me updated about oximeters "
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Low Point~VERY discouraged and depressed!!
I suppose I have made some progress since starting CPAP in Mid March. I am fairly well adjusted to the Quattro FX full face mask. My machine is on Aflex set 9-12. Most nights I sleep well until some back pain wakes me. Well I had my over night O2 sat last night. Still 5% of the time I was at 80%. When I was on pressure of 8 O2 sat was below 90 10% of the time. The rest was all above 90. I feel sure my MD will put me on O2 at night now also with the CPAP. I am only 63, 5'6" and 133 pounds. So loosing weight is not really in the equation. At my first visit with the sleep Doc she said my airway was probably small as I am petite all over. Both my husband & I are retired and like to do some traveling. Well with O2 I see that ending. It is one thing to travel with the CPAP but I will not be carrying )2 tanks and taking out at each hotel/motel we are staying in. Am I wrong? If machine is already on Aflex then if pressure were increased it would not help any more? 90% of the time my pressure is 10.2 now. I feel very defeated with this horrible "disease". I have been compliant from day one and I still do not feel I am winning. Well, I am done whining and ranting. Just waiting until the doctor calls back. It won't be today and I am impatient and worried!
Views: 143
Replies to This Discussion
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Permalink Reply by Patty Tucker on
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Hi Ginny,
Sorry to hear you are so discouraged and depressed. I'm sure you were hoping to have a perfect overnight O2 test and it just didn't happen. You did mention, however that there was improvement with an increase in pressures. I agree with your logic that perhaps increasing the pressure range again may bring further benefit. Seems worth a try. Other things to consider are the amount of leak and whether the machine has been calibrated to work with your mask (not all machines have this fine control, but some do...) Also, was there any indication from your sleep test that you were more vulnerable in one sleeping position or another? Sometimes just avoiding back sleeping can be all that's needed to eliminate that last 5% of low oxygen time. If you indeed have a petite airway -- and maybe a less than petite tongue -- a dental appliance or surgery may be able to alter that enough to let the CPAP work beautifully ( Or even make it unnecessary??)
It's fine to whine and rant for a minute or two. Lets out the stress demons. But then get back to exploring options There are still plenty of those. Worse case... There are some incredibly small and portable oxygen generators now that can travel easily. I have a friend who is an international speaker and consultant and flies all over the world with her CPAP and O2. She doesn't let a luggage issue stop her from living her life!
Best Wishes for Peaceful Sleep,
Patty Tucker, PA-C
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Permalink Reply by Ginny Edmundson on
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I believe my sleep doctor mentioned my tongue was large for my mouth! SO maybe, there is some hope that more pressure would "fix" me? It's funny (not Ha!Ha!) I am a nurse and have taken care of people that were on O2 24/7. I just have this aversion to having a concentrator in my home. Not being rational, am I? Well. I am hoping the doctor has some other tricks up her sleeve before the O2. Why did the CPAP machine not go to a higher pressure~it is on AFLEX 9-12 and 90% of the time has been at 10.2?
Thanks for the encouragement. I just looked at some of the portable concentrators ~if insurance did not help they are 4-5 thousand it looks like. Yikes!
Patty Tucker said:Hi Ginny,
Sorry to hear you are so discouraged and depressed. I'm sure you were hoping to have a perfect overnight O2 test and it just didn't happen. You did mention, however that there was improvement with an increase in pressures. I agree with your logic that perhaps increasing the pressure range again may bring further benefit. Seems worth a try. Other things to consider are the amount of leak and whether the machine has been calibrated to work with your mask (not all machines have this fine control, but some do...) Also, was there any indication from your sleep test that you were more vulnerable in one sleeping position or another? Sometimes just avoiding back sleeping can be all that's needed to eliminate that last 5% of low oxygen time. If you indeed have a petite airway -- and maybe a less than petite tongue -- a dental appliance or surgery may be able to alter that enough to let the CPAP work beautifully ( Or even make it unnecessary??)
It's fine to whine and rant for a minute or two. Lets out the stress demons. But then get back to exploring options There are still plenty of those. Worse case... There are some incredibly small and portable oxygen generators now that can travel easily. I have a friend who is an international speaker and consultant and flies all over the world with her CPAP and O2. She doesn't let a luggage issue stop her from living her life!
Best Wishes for Peaceful Sleep,
Patty Tucker, PA-C
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Permalink Reply by Mary Z on
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Ginny, I am sorry to hear you're having such a bad time. Yes, traveling with an O2 concentrator is rather daunting, though what Patty Tucker had to say about her friend traveling all over with O2 and a CPAP is encouraging. If you need O2 hopefully it will be only while you sleep.
An increase in your AFLEX pressure will not increase your O2, it only helps if you are having apneas.
10.2 must be all that's needed to control your apnea. That's one good thing.
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If it is needed it is only for when sleeping. I still can't see being able to live like I am used to. I might as well go back to work full time. No use in being retired and can't even spend time away from the house overnight. I know there are many in worse condition then this but right now to me this is the pits. I am thinking a trach would be better than this.
Mary Z said:
Ginny, I am sorry to hear you're having such a bad time. Yes, traveling with an O2 concentrator is rather daunting, though what Patty Tucker had to say about her friend traveling all over with O2 and a CPAP is encouraging. If you need O2 hopefully it will be only while you sleep.
An increase in your AFLEX pressure will not increase your O2, it only helps if you are having apneas.
10.2 must be all that's needed to control your apnea. That's one good thing.
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Hi Ginny, Dr Steven Park has insight on UARS you may want to look at his posts here and at his own sight.You did not give up on your patients ....dont give up on your self .Their are many ways of dealing with our maladies ,Their is a solution for you somewhere out here .Good Sleep,Chris
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I hope you are correct, Chris. Still have not heard back from Sleep doctor about the test results. So I think to also ask her exactly what diagnosis she had given me. I need to read up on UARS. Thanks Chris.
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IF you do have a small airway and other doctors confirm it, they can enlarge the throat by pulling the tongue forward and literally tying it to your hyoid bone. I had it done and only suggest it for we who get desperate after all else fails. Autotritration should go as high as needed. I average 14 but set my max to 20. Have they tried a bi-pap to help you exhale better? If you have only seen the same doctors and had just one or two studies at the same place, it's time to go get other opinions and a study at a different location. I have the best equipment, bed and seen at least 6 doctors had UPPP, deviated septum and the hyoid advance with no improvement ever. I take drugs to go to sleep & drugs to stay awake, diet, exercise no caffeine and the normal sleep best practices. No matter how many doctors "practice" on us, not all of us get relief from the same treatments which "cure" most OSA patients. If you hang around and learn from these other folk and study on your own, it will not take too long before you know as much as the doctors. Many just switched fields to sleep and are not pulmonary specialists or brain specialists so one doc is a carpenter who only thinks to cure you with a hammer and nails, another is a plumber wanting to rotor rooter your pipes and another is a drug pusher. I've yet to meet a sleep doc with a holistic background in most sleep related disciplines. You must take the best from all the disciplines and bring up the ones your doc appears to be weak in to them politely. Even if they are NOT weak, at least you will have more confidence in them knowing they have considered that previously and then explain why it is not applicable. Or your BS detector may go off and tell you to find a new doc. I haven't had any significant REM sleep for at least 15 years but don't have central apnea either. So I feel qualified to offer this off the wall opinion.My best wishes for you to get relief. I hope you are treating the O2 and apnea as separate unrelated issues since your CPAP has stopped most apnea events but the O2 issue remains. Make sure the O2 sensor is good and calibrated if they/you only have one. Put it on different fingers incase poor circulation in the finger they always use is under reporting. I don't know squat about how they work but as a computer guy, I would verify the sensor works fine on others and have the check your O2 several ways to confirm your results. It is indeed no fun for anybody who is affected enough to join this group for help. Garry
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"adjusted to the Quattro FX full face mask"
I also tried the Quattro FX full face and could never get it to work. It has lots of air noises.
And my cheeks would expand with breathing in. And leaks occur easily. I must be doing
something wrong. Best of luck with your procedures.
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I find if I look in the mirror when putting the mask on. Then I lay down, adjust straps if seems needed, turn machine on, then gently "re-sit" the mask and usually does fine. I think when I turn on the pillow some leaks are caused. Happened twice last night. Then I have to get up and do it all over again. This was how the RT showed me to put it on. (he did not mention using a mirror)
Wade Hampton said:
"adjusted to the Quattro FX full face mask"
I also tried the Quattro FX full face and could never get it to work. It has lots of air noises.
And my cheeks would expand with breathing in. And leaks occur easily. I must be doing
something wrong. Best of luck with your procedures.
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http://www.sleepnation.tv/ has videos on how to fit the FX mask.
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Permalink Reply by D. W. Conn on
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I had some great results using a CPAP pillow. It has a areas carved out so that when I turn to my side the mask isnt pushed off my face.
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I have tried the contour pillow and the DoubleEdge. The contour is too hard and the double edge also. I am going to try and restuff the double edge with new down from a pillow I just bought. If the contour were a little less hard I would like it~!
D. W. Conn said:
I had some great results using a CPAP pillow. It has a areas carved out so that when I turn to my side the mask isnt pushed off my face.
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