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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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#14
RE: Newbie: Severe CSA, OSCAR help request.
So, I thought that I'd post an update, for what it's worth.

TLDR: Nothing much has changed in practice but cogs are turning slowly.

After weeks of sometimes daily nagging, of sending them emails with carefully worded "requests" for someone to give me either oxygen or ASV titration, and being messed around with, I finally got a phone call from a woman who is one of the specialists working in the respiratory ward designed for cases of respiratory failure, COPD etc. Because of the consistent low sats and high CAs, she wants to admit me for a few days to do some central blood gas measurements, an echo etc to make sure I'm not technically in respiratory failure from the unmanaged CSA, and that I don't have any underlying heart failure either (which is standard pre-ASV). Then she's going to try different methods (APAP with O2 supplementation, BiPAP or ASV) depending on what they find and what works. Honestly, I'm pretty much done with CPAP/APAP at this point, and I genuinely don't want home O2 unless I absolutely have to - certainly not as an alternative to effective management and control of my central apnea.

I am genuinely terrified - the last place I want to be right now is in a hospital, but there's no way around it - and I guess at least being on a specialist ward for titrating ventilation for highly vulnerable cardiorespiratory patients where they take extra care to avoid COVID rather than having to get ambulance transport to and from the hospital three or four times and then go into less controlled areas of the hospital multiple times is probably a good thing... right?

So yeah. I'm waiting for that. And I've been waiting since 13th July. No clue how long the wait will be. And in the meantime, I'm still plodding along.

I'm not sure why but in the last couple of weeks I've been getting a crazy level of "Obstructive" apneas that I'm genuinely convinced are FOT deciding there's some potential obstruction, even though the event itself is central in nature. I've watched myself over and over through these events, night after night. There's no build-up, no increased levels of flow limitation leading to an obstructive event, no snoring, no startling awake. Just regular breathing - pause - regular breathing - pause... and on the video itself, there's no sign that I'm even trying to breathe between these. And obviously, because the Airsense only uses FOT and not a chest/stomach belt to measure respiratory effort, it can't tell for sure if those events are central or not... So to test it out, I went from fixed CPAP to APAP 15-20, and sure enough - my AHI didn't change significantly, but suddenly almost all of the "obstructive" events were labelled as central events instead. In the end, it doesn't matter if my airway is completely closed, if I don't even try to breathe, then it's a central event.

I've tried all tricks to exclude positional OAs - the cervical collar is great for helping to stop my mouth from falling open and causing leaks, and I don't need a chin strap if I wear it, which is nice if I'm having to use pillows to let the bridge of my nose rest up. Pillows, different heights, stopping my head from rolling, etc. But whatever triggered it, I don't think it's genuine obstructive events in the majority.

Beyond that, I just have to wait. But at least the cogs are slowly creaking forwards.
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#15
RE: Newbie: Severe CSA, OSCAR help request.
Oh, and because I'm a muppet, I forgot to add this part. I have the setting on for OSCAR to flag events that haven't triggered a full-on Apnea/hypopnea. I have the default settings (8 seconds, and a flow restriction of 50% (tagged FRL) or 20% (tagged FRS). I am routinely finding that I have at least as many of these "not quite" events, and the FRL can be particularly long, too - and it's clear to see that those "not-quite-events" line up with SpO2 drops too. So on most days I can at least double the AHI if I were to count these.

Oddly enough, the only time I really have anything on Flow Limitation, though, is usually the periods of sleep where I have the best sats - because my resp rate is usually way up overall. I suspect these are matching up to periods of particularly vivid dreaming but without an EEG I can't know for sure. All I know is it's weird but probably doesn't help my exhaustion!
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#16
RE: Newbie: Severe CSA, OSCAR help request.
SOP it seems. Hurry up and wait. Have fun in hospital hotel. Still sounds like most docs are so smart yet stupid at the same time. Seems worldwide.
Dave

OSCAR
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Soft Cervical Collar Wiki
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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#17
RE: Newbie: Severe CSA, OSCAR help request.
Although these expensive trials are SOP, it can't hurt to just ask for home trial of ASV at default settings. This crap ain't rocket science, and the Resmed ASV is usually stellar right out of the box. It works or it doesn't. Ask if this is possible after cardiac function screening as an outpatient. I don't know if you have copays on all this, but it is an extraordinarily expensive approach to problem solving.
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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#18
RE: Newbie: Severe CSA, OSCAR help request.
Take it from me, the ASV is easy to setup. The hard part is getting it and dealing with the quacks.

ResMed Titration with a little tweak here and there as necessary, that's about it.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
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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#19
RE: Newbie: Severe CSA, OSCAR help request.
Thanks, everyone.

The good thing about the NHS is no copays (at least for equipment like this). I'll chase them up, and see if they can speed things along. Honestly, a home trial would be so much easier, but it is what it is, I suppose.
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#20
RE: Newbie: Severe CSA, OSCAR help request.
Hi all. An update with some actual news!

So, last week, I got a call from the hospital, asking if a nurse could visit that day to come and do a blood gas on me. I said sure, anything to speed things along a bit, and so we did the thing. The results weren't great, which I suppose I shouldn't be surprised about considering how uncontrolled the CSA is but it still unsettled me a lot. My pH was within the normal range (barely), but my pCO2 was way over what it should be, and my bicarb levels were also high, plus my pO2 was the equivalent of about 88% SaO2. What this basically means is that I'm in fully controlled respiratory acidosis (almost certainly type 2 respiratory failure) secondary to the CSA. That felt like a kick in the gut to find out, honestly, but it made me feel even more vulnerable knowing how quickly that could be thrown off by one night even without CPAP or even the slightest cold.

Anyway, I was warned that the wait was still probably going to be a long time because of Reasons™. Imagine my surprise when the phone rang again yesterday and the hospital asked if I could come in on Thursday because they had a cancellation. So, they sent out a nurse again yesterday afternoon to tickle my brain and check my gag reflex for a Covid test, and left me with a pulse ox to record myself overnight.

You guys, they use VIATOM CheckMeO2s. I was so happy to see that. The nurse said they swapped to those not only because the rings are nice but because they don't loan them out with a charging cable so people don't steal them as much, the older ones had regular batteries, and people would just walk off with £500 equipment... I genuinely hate some people. Anyway. pulse ox stopped recording after 10 hours (surprise surprise) so I'm going to make sure to restart it again tonight because I sleep way too long. I'm also bringing my laptop anyway, which has all my CPAP and pulse ox data on it too.

So yeah. Barring any unforeseen problems, or somehow popping a positive covid test, I'll be off to hospital on Thursday for an estimated 3 days, but it will depend on a lot of things, and hopefully, I'll be coming home with an ASV. Keep your fingers crossed for me!

P.S. I did ask about a home trial, but they won't provide an ASV without testing all the other stuff first AND doing the echo to ensure I'm not in heart failure (even though AFAIK that research is a little bit more about covering their asses than anything else). I am REALLY hoping they'll give me the Resmed, but I guess we'll have to see.
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