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[Equipment] DiabolikalDeux - Therapy Assistance
#81
RE: DiabolikalDeux - Therapy Assistance
You must turn off ramp. Your complete session is shorter than the ramp time allowed (30-minutes) and the device is not recording events or responding to events during ramp. Minimum pressure 7.0, Maximum pressure 10.0, EPR On, Full-Time, EPR setting 3, Ramp OFF. When posting charts, minimize the monthly calendar by clicking the triangle next to the date, and include Events, Flow Rate, Pressure or mask pressure, Flow limits and leaks.
Sleeprider
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#82
RE: DiabolikalDeux - Therapy Assistance
I tried those settings. Could not even make it a minute, because it felt like so much yet I was able to breathe, started coughing and choking, my throat and chest hurt and I was gasping for air after after taking off the mask. Will say that I like the ramp because it's the only way my legs don't immediately start spazzing out and I'm not ripping my mask off within a minute of turning the machine off.

Anyway, as an experiment this morning, I woke up, and used the CPAP with the settings I'd previously been using. It was helpful in waking me up, for some reason it did help wake me up somewhat, like 15 minutes of it, my eyes were less painful, and I tried staying calm but then my body started just needing to move, like my pelvis started thrusting into the air, and my fingers started tapping, my arms flexing, it was like a feeling going through my body that needed out. Eventually my legs started contorting and zigzagging so I turned it off. I don't know, maybe they're something with my nerves system that causes CPAP to affect it differently? I have not heard back yet from the lab where the sleep study will be done. (Also, the tidal volume got to about 2000 this morning, and I am worried it might be a bad thing.)


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#83
RE: DiabolikalDeux - Therapy Assistance
Update, last night I tried the settings wiht 7-10, no ramp, EPR 3 etc. once more. True to predictions, it was not pleasant and I only got to 4 minutes this time: it was very forceful, my eyes started feeling like they were bulging, some chest pain that persisted after I took the mask off, around 3 minutes I started hyperventilating while trying to stop it, my legs and back just kept moving and contorting and trying to constantly change position, I could not lie still overall and eventually had to get up to start punching the air. I don't know, I included screenshots below of what little data I could get.
But, after waking up, getting the SD card out for OSCAR and such, I impulsively felt the need to try again (hence why I didn't include data for that), and did. And it strangely super-weak, 7 pressure it said but lying down, I constantly had to gulp and deeply inhale to get anything like every 2 seconds because ti felt idk there was so little. that was about five indues before I was feeling chest pains.


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#84
RE: DiabolikalDeux - Therapy Assistance
Lats night, I tried 7 only, no ramp, and still got 4 minutes before that feeling through my whole body happened again, like it needed to radiate energy out into my muscles and eyes and such, with my back and arms being unable to stay still and wanting to move around, my fingers tapping, etc. It's not like a, warm, "I'm feeling energetic' feeling, it's more like my body's muscles suddenly being given commands to move all at once and I'm barely keeping them Didn't get an OSCAR screenshot, it's like, there would not be enough data anyway and I honestly feel like a freak. Like, I have not been able to find so far any other posts that describe similar. And if there's just something wrong with my body or nerves or what that all the recommendations aren't working on, that means I'll never be ablate use this therapy because it will either make me feel like I'm suffocating or make me hyper.
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#85
RE: DiabolikalDeux - Therapy Assistance
This must be very frustrating for you, having all these unusual somatic reactions to CPAP.

Have you yet tried setting the machine up outside your bedroom and using it for a few hours while you watch TV, read, or use your devices?
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#86
RE: DiabolikalDeux - Therapy Assistance
I have, and it still does it.
Anyway, I also managed to finally get the sleep study on Tuesday. Unfortunately, still the same responses when they set up their CPAP, like my eyes suddenly would not want to shut, etc. Even with a BiPAP, somehow the air flow had its own rhythm I could not keep in time with and still was wried back awake. Strange thing I noticed though, is that the wires and electrodes and everything they put on me, gave a similar reaction, I could feel everyone of them and had a similar inability to fall sleep. Like for 6 hours I was awake, somehow managed to get about 30 minutes. I was paranoid for the rest of the morning after I left. So I doubt any of the data is good since they needed me to close my eyes, but it was a pattern where my eyes would want to shut, then a few secodns alter want to burst open, etc.
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#87
RE: DiabolikalDeux - Therapy Assistance
I'm sorry to hear the sleep study was so difficult. I hope they got some useful data from it. When you hear back about it, let us know, would you?
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