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Newbie: Severe CSA, OSCAR help request.
#11
RE: Newbie: Severe CSA, OSCAR help request.
Oh dear just seen this graph not good. For your information I spent 6 months working with my Trust following 1 home study and 2 in hospital sleep studies my consultant recommended an ASV machine but I had to move through various machines including a Resmed LUMIS ST which was like being kicked in the face with a wall of air on my prescribed settings. The ASV solved all my problems I actually self purchased so a funding request to the NHS trust was not required the consultant just provided the pescription.
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#12
RE: Newbie: Severe CSA, OSCAR help request.
(05-03-2021, 07:41 AM)Sleeprider Wrote: Ratchick, I noticed in your other thread regarding incomplete pressure data that you are suffering from very high central apnea.  I realize the UK medical system is sometimes difficult, but you clearly need an adaptive servo ventilator (ASV). Please contact your consultant or physician and get a test or something on the schedule to evaluate or trial ASV. This is not good for your health or well-being.  If your medical team is not responsive, I think trying to source ASV privately may be a very good idea.  Jaswilliams is also from the UK and has addressed his needs this way.  Send him a PM.  Meanwhile, I think my recommendation is to do two things, reduce the pressure to 12.0, and consider the possibility that yor obstrucrtive apnea may be positional. There is so much central here, that it is hard to sort out what might be chin-tucking, but I'll link a couple wiki articles for your consideration.  If you are using a tall or firm pillow, try a smaller flatter pillow, or experiment with a soft cervical collar. 
Positional apnea: http://www.apneaboard.com/wiki/index.php...onal_Apnea 
Soft Cervical Collar: http://www.apneaboard.com/wiki/index.php...cal_Collar

Thanks for your reply - believe me, I am REALLY trying to get onto the ASV. My sleep clinic staff have been hassling the Consultant and he's MEANT to be contacting me by phone, though when that'll be is anyone's guess because it literally took months of them saying they would call (because Covid, so no in-hospital appointments) and me sitting around all day waiting, only for the consultant to have cancelled the "clinic" and nobody bothers to get in touch until 2 or 3 weeks later to remake it. This happened half a dozen times, it was infuriating. I mean yes - I get that things are busy, but it's infuriating enough that I was diagnosed with CSA nearly a decade ago and nothing was done then.

Thanks for the advice re: chin tucking. I actually just shared that info and explanation with my best buddy who is also on CPAP for severe OSA, and they could only sleep in certain positions with the pillow shoved under their chin - so they're now trying out the soft collar to see if that is more comfortable, especially as they have joint issues and fibromyalgia and spinal degeneration, so finding a good position to sleep is almost impossible.

I definitely have tried to exclude chin tucking/positional apnoea - I don't THINK that's what's going on and I was very aware of chin tucking because of having to angle the head of the bed up a little as I also have POTS (a form of dysautonomia) that currently has me bedbound and unable to sit upright completely for any length of time. I've already swapped to just one pillow (and often it's under my shoulders as well as just my head) so I don't think that's too high, but I will consider giving the soft collar a try too.

I can definitely try reducing the pressure to 12 - upping it to 15 does seem to have quashed the obstructives to almost none (though honestly, I'm not entirely sure why I would suddenly get one random OA in the middle of a string of CAs when I'm literally listening to the recording and tracking the waveforms, and there's no snore, no sounds of me gagging/choking/trying to breathe, no movement, no rustling, nothing... but I guess maybe I'm just not so great at reading the waveforms. I can definitely post some closeups if that would help, just let me know what graphs you need (I'm guessing flow, mask pressure and FL?). But as I said, a lot of the supposed "obstructive" events seem to happen when I know for sure I'm awake. Last night (while testing my FlashAir/FlashPAP setup which is SO much easier) I supposedly had 4 OAs, 1 CA and a bunch of flow restrictions in half an hour when I was not even close to sleepy.

I did wonder if perhaps turning on the EPR might help with the flow restrictions - I saw some other threads mentioning that could help, and I feel like perhaps if I turned EPR on full time at 3, I might at least see a difference during the periods where I'm having less central events. Do you think that might be worth a try while I wait for the collar?

Thanks again for coming back to this and checking in. I'm so tired of it, and being disabled (and bed bound) makes it all the more difficult to get the money together to purchase an ASV box myself. But if that's what I have to do, then that's what I'll do. I'm so tired of feeling like garbage.
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#13
RE: Newbie: Severe CSA, OSCAR help request.
(05-03-2021, 10:10 AM)jaswilliams Wrote: Oh dear just seen this graph not good. For your information I spent 6 months working with my Trust following 1 home study and 2 in hospital sleep studies my consultant recommended an ASV machine but I had to move through various machines including a Resmed LUMIS ST which was like being kicked in the face with a wall of air on my prescribed settings. The ASV solved all my problems I actually self purchased so a funding request to the NHS trust was not required the consultant just provided the pescription.


Thanks for letting me know your process.

Yeah, sadly my local hospital has been... incompetent. Though I imagine a lot of that is related to the stupid pandemic and no doubt all of the doctors are being called in to treat people with the virus. But my consultant has a habit of just not doing his "clinic" phone calls and yeah, God knows when that's going to happen. I think I'm just going to chase it up with the hospital if I don't hear today (Wednesday is USUALLY his clinic day). Because I'm spending an insane amount of the night with significantly lowered O2 (like 50-75% of the recording time) and a great night is where my sats don't drop out of the eighties (or at least high seventies). Or when I can't sleep properly for other reasons (like my chronic pain or whatnot) and wake up every 30-60 minutes all night or even more often, so I don't sleep long enough to get into the serious apnea runs. 

I really need to find a good way to visually record myself sleeping. Most of the webcam stuff I find tends to cut off after a few hours. Audio helps but obviously, a camera would demonstrate if I was shifting more subtly or tucking my chin without realising it.

Thanks again, and hopefully my doctor will get his butt into gear soon.
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