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+--- Thread: So frustrated (/Thread-So-frustrated--16228)
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So frustrated - always_tired - 01-08-2017
I have a ResMed S9 and years of data. I use a F&P medium nasal mask. I use a humidity and a heated hose. I've tried nasal pillows but I don't like them. I also have a backup Philips Respironics RemStar System One A-Flex Auto. I don't use it.
My frustration is that the pulsing of the air makes me feel like the machine is forcing me to breathe when I don't want to. Just when I start to fall asleep, I relax blissfully, I 'm no longer trying to breathe in tandem with the machine every 2 seconds. And I start to get into that wonderful state where your mind starts to wander ....and then I panic and come out of it because the pulsing is pushing air into me that I'm not wanting to breathe in and I want to exhale - but I need to inhale. Does that make any sense? This goes on for a while until I do finally fall asleep. But I don't feel well rested.
I was originally prescribed a pressure of 12. Feel like I'm suffocating. It makes my stomach hurt like a mofo after a few days of using 12. I can feel the air going down my esophagus. I can hear my stomach gurgling within minutes of putting my mask on. I'm all burpy and farty all the time.
I've tried lowering the pressure alone - not good results. I've tried lowering the pressure along with a mandibular advancement device I got from my dentist - acceptable results. I've tried the max EPR setting. I've tried no EPR. Where I'm most comfortable falling asleep is around a pressure of 6 w/ Max EPR w/ Mandibular Advancement Device. With that latter combo I never get any stomach pain and according to SleepyHead my AHI's are good. But I'm drag ass tired. At or 10 or 11 or 12 it's hard to fall asleep because I'm being forced to breathe artificially fast, but I do wake up better rested, but - and this is serious - my insides of my body HURT.
My life is lived honestly with daily negotiating a trade off between internal body pain or feeling awake. It sucks.
What do I do?
The only alternative I can think of is either to start getting surgeries or go on a starvation diet.
RE: So frustrated - Beej - 01-08-2017
It will be most helpful for those who want to give feedback to see more of what is happening during your sleep. If you have a PC, please download SleepyHead software and install it (as administrator if on Windows 10). They, you can put a recording chip from the CPAP into your PC and upload the data into SleepyHead, get some screen shots, and upload them to Imgur or Google Drive or other online photo sharing option for us to view.
It may be that a different machine won't function quite the same and be easier to tolerate.
RE: So frustrated - srlevine1 - 01-08-2017
(01-08-2017, 06:10 PM)always_tired Wrote: What do I do?
I think the first step would be to find a competent physician that specializes in sleep apnea and is willing to go beyond punching your compliance ticket and rendering generalized advice. It is often hard to find a physician who can make the time to really look at underlying data and make recommendations. Pretty much why I take my laptop with me and show the data that I believe requires analysis and answers.
Perhaps you need a more sophisticated machine (bi-pap or ASV) that allows for more precise control over airflow and timing.
Second, you say you have years of data, but has anyone really analyzed the data, drilling down to determine if there are any seemingly abnormal arousal conditions versus flow and pressure?
Has anyone recommended anti-anxiety medication or a CBT (Cognitive behavioral therapy) program to alter anticipatory responses to xPAP therapy?
As for being "drag-ass tired," have you had a recent comprehensive physical and looked at hormonal (thyroid, adrenals, etc.) and chemical balances, heart arrhythmias, higher than average red blood cell counts that may indicate the need for supplemental oxygen? Are you in physical pain? Do you take drugs that are known to interfere with sleep patterns and/or ramp up anxiety?
I am sure that some of the other forum members will be weighing in shortly with some other advice or possibly the answers necessary to provide a direction towards a solution.
I wish you the best of luck in sorting out your issues and pursuing a restful tomorrow.
RE: So frustrated - kwhenrykerr - 01-08-2017
Can you set the ramp to start at 6 and move up after you fall asleep ?
RE: So frustrated - DeepBreathing - 01-09-2017
Quote:My frustration is that the pulsing of the air makes me feel like the machine is forcing me to breathe when I don't want to.
Are you sure your machine is an Elite? Elites provide a steady, single pressure and do not pulse. What you're describing sounds more like a VPAP than an Elite. Unless there is something wrong with your machine.
It's not unknown (quite common) for people to have difficulty exhaling against pressure, especially during that transition-to-sleep period. The ramp feature will help by gradually increasing pressure over a period of time (5 minutes to 45 minutes) so that you should be fully asleep by the time it reaches maximum pressure. EPR should also help, though you seem to have mixed results with that.
RE: So frustrated - PoolQ - 01-09-2017
Pretty tired here, midnight, but there is a difference between having the apneas under control (AHI) and getting restful sleep. Something about CPAP is disturbing you enough that you are not getting restful sleep. Have you had your S9 for 5 or more years? If so you are do for a new one and I would suggest you get a Bi-Level aircurve 10 VPAP. With this you can set a specific exhale pressure instead of a fixed amount less than inhale. Additionally there are some more settings that I have found to be very helpful TI-min, TI-max, Trigger settings. These are all fine tuning of the interaction between you and the machine.
RE: So frustrated - 49er - 01-09-2017
As one who finds my VPAP machine alot more comfortable than using an APAP/CPAP machine, I completely endorse PoolQ's advice. Definitely see if getting a Bi-Level aircurve 10 VPAP is a possibility.
RE: So frustrated - always_tired - 01-09-2017
Here's the exported file from SleepyHead.
Correction - it won't allow me to include a link or attach a .csv.
RE: So frustrated - Sleeprider - 01-09-2017
You will need 4 posts to use a hyperlink. Meanwhile you might be able to attach a file or use an incomplete URL to let us know where to look for an image.
My signature shows how to organize and post #Sleepyhead screenshots.
RE: So frustrated - derekroy - 01-09-2017
I would suggest you get a resmed S9 with afull face mask such as a simplex . It is silent and will only deliver the air you need automatically on demand . I have had mine for almost a year now and it is absolutely brilliant . I never thought I would be able to use it at the beginning when I was first diagnosed , but I have not had a single night without it in the last year . It is absolutely silent and so am I now much to my wifes' pleasure . Hope this helps.
