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[Diagnosis] Low Leak, High UAs, Flow Limit?
#21
RE: Low Leak, High UAs, Flow Limit?
idk about intended use but I've worn a collar for more than 2 years to reduce lip leaks. I'd rather not, but leaks are too high without. I won't wear ties or turtlenecks but I use the collar because I have little choice. unfortunately, having a short neck & weak chin, I have to wear it pretty tight. still, aside from the 10 second hassle of putting it on / removing it, I don't notice it while it's on. it can be hot in summer and it often makes my neck itch during the day, but it's part the price I pay for better sleep.

edit: this is not intended to contradict an earlier post. it just shows that our experiences can differ and we all have to keep trying things until we find what works for us.
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#22
RE: Low Leak, High UAs, Flow Limit?
Hi everyone

All I can say is that I really appreciate all of the inputs you've all given me.  Every piece helps me to put this jigsaw puzzle together to create a picture, I hope, of a consistently good night sleep with lots of deep NREM and dreaming.

Sadly so far, no matter what I do, I can't seem to get a full-face mask (FFM) to play nicely with me.  I have found the nasal pillows, both Resmed P10 and N30i, work well.  However, I am concerned that down the track, relying on these alone is going to cause me some grief should I develop a cold or something akin to one, that causes nasal congestion and consequently makes the pillow masks unusable?

Though my Sleep Specialist did talk to me about Nasal Flushing. He has become somewhat of a convert of this process, for in his experience it seems to help an enormous amount. I would be interested what experiences anyone on this forum has had with Nasal Flushing as a way of managing nasal congestion?

I have never had a titration study. I didn't even know they were a thing until recently. Consequently, I spoke with my clinician about these studies and found out they occur, but only in certain (exceptional?) circumstances. Without speaking with the sleep specialist, I am unable to find out what these circumstances are, but I get the impression they are an exception, and the wait in the public side of our hospital system could be quite awhile. The clinician also pointed out that as they were only a snapshot over one night, their efficacy can be somewhat limited.

I also asked the clinician the history behind having a clinician menu that was not accessible to the patient unless they took it upon themselves to go down the track of becoming a so-called, Dr Google. He gave an example, where there have been people with heart conditions that can get into a lot of trouble if their settings are not carefully managed. Happily, I can currently say, my heart trace and a Stress Echo study shows that it is in a very healthy state.

Nonetheless, I think it's time to seek out my sleep specialist again, though he is the head of a hospital department and is primarily a respiratory specialist, so with the current global goings on, he might be difficult to catch.

All of the experiences that you have all had with FFMs, Mask Leaks, Techniques to overcome mouth breathing, Cervical Collars, Self-Titrating Adjustments, Interpreting the OSCAR graphs etc, have been extremely helpful to me, and if there are any more comments or tips anyone can offer about any of these I would greatly appreciate them.

I'm guessing many in this forum have read a lot of material on sleep. I recently read the "Why We Sleep" book, and found it answered a lot of questions about why I really must get on top of sleeping. But if there are other books, research papers etc, that someone could recommend that might expand on that book, I would also really appreciate that. 

Kind Regards
Dream
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#23
RE: Low Leak, High UAs, Flow Limit?
2 comments. first, in 3 years using p10 nasal pillows, I've never had a night so congested the machine didn't break through the congestion to allow me to breathe. it's really nice. second, your clinician is using a scare tactic with little to no basis in fact.
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#24
RE: Low Leak, High UAs, Flow Limit?
Hi Sheepless

Its really encouraging to hear about your experience with congestion.

I don't know enough to comment further on the example the clinician gave. I did however, subsequent to his comment, come across some research papers that suggested there was some basis for what he said.  I would have to go searching again, as I don't think I kept a copy, but I think some of these papers were in the public domain of the USAs NCBI website.

Regards
Dream
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#25
RE: Low Leak, High UAs, Flow Limit?
yes, there's an old study on asv & people with heart disease but that's been called into question. apparently a new study is underway that's said to be disproving the first one. I'm no expert but in 3 years of papping, I've never heard/read about any dangers of adjusting our own settings. personally I've run the gamut of possible settings on 3 different resmed modalities without any bad things happening so far (knock on wood). clinicians are notorious for telling us why we shouldn't take responsibility for our own apnea therapy.
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#26
RE: Low Leak, High UAs, Flow Limit?
Hi Sheepless

I certainly feel like I need to persist with this Full Face mask (FFM).

It seems that there may potentially be a setting sweet spot that will do the trick, but I don't know how to get there at this point. Last night wasn't encouraging, particularly as it seems consistent (consistently bad) with other attempts at using the FFM, such as the one I attached at the beginning of this thread.

I would love to do away with Chin strap, but I guess I would also love to not have to use CPAP therapy in the first place  Coffee
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#27
RE: Low Leak, High UAs, Flow Limit?
(03-12-2020, 04:44 PM)sheepless Wrote:  in 3 years using p10 nasal pillows, I've never had a night so congested the machine didn't break through the congestion to allow me to breathe.  
Me too!!!
It's physics, pressure always wins.
When you are congested use the mask (P10 pillows), it may seem like it will not/cannot work, keep trying, You might swear there is no way this is working, keep trying, 5-10 minutes, sometimes longer.  Eventually, there will be a breakthrough and you will be good for the rest of the night.  Mouth breathing is necessary to get air but keep trying.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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#28
RE: Low Leak, High UAs, Flow Limit?
FWIW I'm on ASV with some heart conditions. AND I adjust my settings in that secret clinician menu. Never has it been an issue with the heart. I did have to pass the echo test to get the ASV, part of that wrong study referred to by sheepless.

Do not believe YOU can't adjust your machine. You cannot blow your lungs up with a CPAP, no matter how hard you try. The respiratory place that tells you they must set it and manage those settings are mainly just trying to justify keeping their job and money flowing from your pocket.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#29
RE: Low Leak, High UAs, Flow Limit?
Hi Bonjour

Thanks for the encouragement. It seems I just need to remain patient.

Hi Dave

The clinician was simply responding to my question when I asked if he had any idea of the history behind why there is such thing as a clinicians menu. His example was just his thoughts, and I suppose him surmising why it might be so. We have a good relationship, and I feel that I can speak openly with him, and get his honest opinion. Understandably though, he cannot give me titration advise, and that is something I certainly get. He also admits, quite freely, when he simply does not know the answer to one of my questions, or isn't at liberty to say.

As far as accessing the clinicians menu, I have no issue with accessing it, and making adjustments, with the caveat - only to a point. I certainly agree that the person that cares most about my health is me. The caveat is a self-imposed limitation and is probably little more than a personality thing. Plus, my experiences have shown me that there is normally, though definitely not always, a good reason underlying why things are, as they are. I just like to know what they are before I make my mind up, and without the emotion of these things skewing that process. That's just me. 

Regards
Dream
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#30
RE: Low Leak, High UAs, Flow Limit?
I have never had a full face mask since I started therapy in 2008, and never missed a night due to congestion. I've certainly had colds, flu and even Lyme Meningitis, and used the nasal pillows. I have sometimes resorted to Flonase to resolve allergy problems. I'm not saying you shouldn't have a FFM to fall back on, but I never have. I have had the same thoughts about covering the contingency. So far, so good.

You asked earlier about flow limitations. They are pretty common on ASV and especially if you rely on the pressure support to support non-spontaneous respiration. If they are present during spontaneous breathing, then higher minimum pressure support often helps. Glad to hear you changed to ASVauto.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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