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Newbie: Severe CSA, OSCAR help request.
#1
Question 
Newbie: Severe CSA, OSCAR help request.
Hi everyone

Apologies for the long post, but I want to ensure I'm giving you a full overview of where I am right now.

History/Background Info

I have lived with severe pain for 30 years now (think perforated appendix/peritonitis pain 24/7), and I've been on opioids on and off for pretty much the last 16 years or so. I've been on the same medication and the same dose for almost all of that time, without any serious side effects of note. I first started having symptoms I suspected were sleep apnea about 9 years ago. After waking up with a racing heart and breathless, I bought a pulse oximeter to record in my sleep in the hopes of seeing if this was the case. Instead, I discovered that I had pretty severe tachycardia (150-200 bpm at rest). After a couple of hospitalizations to exclude more serious things, they finally settled on a harmless first-degree heart block and IST and then POTS or some weird combination of both. However, because I was complaining about daytime sleepiness and exhaustion, brain fog etc, I was sent for a sleep study after about a year. 

The doctor had assumed I would have OSAS (high 20s BMI, small mouth, narrow airway etc) but the at-home sleep study showed that I didn't, I had CSA. I wasn't given a severity, or any kind of treatment, but told it was just one of those things and probably related to my medications.

Over the last almost-decade, things have deteriorated. My POTS is now so severe that I am bedbound and despite my asking repeatedly about the CSA, nobody seemed to know about or want to treat it. I was at the point where I would need 3 hrs to fully wake up, I was falling asleep uncontrollably during the day, and I was always waking up with a monster headache that took hours to dissipate too, as well as much more frequent migraines.

Sleep SpO2 Measurements

About 2 years ago, I updated to a new pulse oximeter, as my last one had kicked the bucket during a move. 

  • Between July and October 2019, I would spend about 1-4% of the night with sub 90% SpO₂, the average SpO₂ was around 92. with mostly smallish desats into the high 80s, and just a handful (5-10) as far as the low 80s and the high 70s. 
    (Click Here For Image)

  • Now, though, it's significantly worse, and I am spending between 25 and 50% of the night under 90% SpO₂, my average SpO₂ is in the high 80s, with hundreds of big desats into the low 80s, 70s and even 60s. 
    (Click Here For Image)


Recent Sleep Study Results

Completed February 2021, I was diagnosed with severe CSA (80+ CAI) and ESS of 22. The consultant said there were a handful of apparent "snores" and obstructive events, but not even enough to really qualify me for mixed sleep apnea. I'm pretty sure these are related to allergies as I have persistent rhinitis and I've always been a mouth breather, even when I'm awake, let alone asleep. I'm certainly not a snorer when I sleep though, unless I'm super congested with a really bad cold or sinus problems, and even then, I usually just end up breathing through my mouth instead and sniffing a lot in a vain attempt to clear my nose.  Unfortunately, I don't have a copy of my sleep study results, so I can't provide those. beyond what I've mentioned here. Neither humans nor snore monitoring apps have detected actual snores, though, even when they're reported in the data, so I'm not sure what they're actually detecting.

APAP Settings

Despite being primarily CSA, the doctor wanted to start me on APAP. 
  • Pressure range - 4-20 cmH₂O
  • EPR - 0 (1 with the ramp which I don't use) 
  • Humidity - 4 
  • Temperature 28°C 
During that time, my AHI has dropped some, but nor reliably.
  • 30 Day Average: AHI - 29.2, 23.7 CAI, 5.1 OAI and 0.4 HI.
  • If I sleep shallowly or nap, then I might get an AHI of 12-15 but that's only happened a couple of times overnight and it still leaves me exhausted because I don't sleep properly and wake frequently from non-apnea reasons.
  • Variability on other days is huge, with AHI from the low 20s to mid/high 40s, making it really hard to get consistent results. 
  • I also tend to spend a significant amount of time sometimes in periodic breathing which I understand is the more generic description of what ResMed labels Cheyne Stokes Respiration.
(Click for OSCAR Images: 12.3028.68 and 38.19 AHI)

I can't relate these variations to any specific thing I am doing. I've tried altering medication timings, changing the number and/or size of doses, my position, the number of pillows, the height of the head and the foot of the bed etc. but nothing seems to make a reliable difference. My consultant has said that he doesn't the pain meds is the main cause and my own experiments seem to confirm that. It's definitely an improvement from 80+ AHI but it's still not great. 


28-Day Follow Up

My ESS was 19 or 20, as although I'm still very tired, I'm able to stay awake a little more and I'm definitely waking up with less difficulty and mind fog most days (though eating almost always results in a nap afterwards, whether I want to or not). I'd tried most of what he was planning to suggest, so we decided to try switching to a fixed pressure at my 95th percentile value plus the ramp for comfort. He didn't expect it to work any more than I did, but we agreed that at least if we try these things, the doctors can't argue that we haven't done it as a delay tactic, and it might help bolster my request for ASV (which he agreed is probably where this is going). Everything in the settings remained the same as before, except that the pressure was fixed at 15 cmH₂O, and the ramp was set to auto, starting at 4 cmH₂O and EPR at 1 only during the ramp.

The auto sleep detection isn't great, the pressure maxed out after a quarter-hour or so, while I was very much still awake. The higher pressures tend to make my ears pop and stuff up, but it doesn't hurt like it did when I started PAP, at least. My chest muscles are aching a little today, like when you've had a cough and your muscles are sore from overuse. I imagine that will ease up if I spend longer at higher pressures.

That said, I don't think it's worsened things, not improved them. Last night, my AHI was 54.41, with my CAI at 47.42 and OAI at 6.11. The "unknown" apneas were just shifts in my mask, so irrelevant, and the HAI is still relatively insignificant. This was fairly consistent between the overnight and my nap, too, but I'm going to run it again at this pressure tonight to be sure. I know that increased pressure can trigger more central events.  

(Click for OSCAR Images: Overview and Periodic Breathing)

Things From OSCAR

I'm fairly sure I can mostly ignore the obstructive part, because now that my card reader has finally arrived, and I can read the full data, it's confirmed what I thought - which is that the "obstructive apneas" almost all seem to occur in the period when I'm awake at the start of the session, or when I have just woken up and shifted position or moved my mask for a moment to scratch or take a drink (as demonstrated by the big leaks). I know that sometimes things are recorded while you're awake that can be recognised as "sleep" events.

I also feel like the "great" nights I had were pretty much just a side effect of not sleeping deeply, either because I was struggling to get the mask fitting comfortably, or because I was being woken up where it was rubbing on my nose (seems to be resolved for now with Duoderm and a Boomerang Gel Pad) or when I was just waking up a lot from otherwise bad nights unrelated to the apnea and APAP. I often see the same with naps, because I am only sleeping shallowly and waiting for my alarm to go off, I don't end up in a deep sleep and I suspect that is why I often have a drop in my AHI after taking a nap.                 

I'm honestly not sure what is going on with the periodic breathing. I'm going to assume that it's not real CSR as that wasn't something my sleep doctor or my cardio have mentioned (and I don't have heart failure, that I know of - and as I had a 24-hour halter measuring my BP, ECG, Pulse, SpO2 from my cardio prior to the sleep study, I'm hoping that still holds true, even though that was done at the very start of 2020). 

Beyond that, I'm not sure if there's anything else that could be suggested by those of you that understand the data far better than I do. I've included some standard views from last night on the fixed and previous nights on the APAP, plus a zoomed-in view on the periodic breathing from last night. If there are any other things I should include, please let me know. I guess it might be worth stopping by on some BiPAP settings, just to be sure, but I know that's also not usually that helpful either.

Thank you so much in advance for any guidance you can provide and again, apologies for the wall of text.
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#2
RE: Newbie: Severe CSA, OSCAR help request.
You have a rather insane number of Central Apnea. I've forgotten what the direction to get there in the UK, but you need to work with the doc to get CA treated if that's an option. Some have had to buy their machine online.

For CA treatment you need a ResMed AirCurve 10 ASV or ResMed CS PaceWave. This will treat Central Apnea, the others attempt to avoid it, and as you see and feel it's not working well.

Complain to the doctor strongly this is not working period. You're done with improper failed treatment, start treating CA properly.
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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#3
RE: Newbie: Severe CSA, OSCAR help request.
Thanks, Dave.

I figured that was probably going to be the case. The sleep clinic nurse is expecting me to call back after the weekend anyway unless there was some miracle so I'll chase them down.
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#4
RE: Newbie: Severe CSA, OSCAR help request.
FWIW noting differences in UK versus US, what I did to get to owning an ASV was to complain loud and long, every time I saw the pulmonary sleep doc, I did my symptom and complaint recitation. Write them down if you need to, but keep telling them till it makes a difference. Hope it helps and keep us updated. If we can be of help ask more questions. Sincere best wishes for an answer for you soon.
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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#5
RE: Newbie: Severe CSA, OSCAR help request.
Thank you for the advice. I've (unfortunately) had a lot of experience at having to fight for correct diagnosis and treatment pretty much my whole life (imagine being told for 14 years that you're faking/exaggerating/overreacting when you have a severe case of a disease that affects 1/10 women). My stepdad has severe COPD and it took five ICU/HDU emergency admissions in respiratory failure to get them to agree to give him BiPAP at home. He's been SO much better since. It's ridiculous how often doctors fight this stuff even when it's blindingly obvious where treatment should go. 

Fingers crossed, though. The nurse did voice his frustration that he couldn't do more to advocate for me because it was blatantly obvious to him that this isn't working and I needed ASV. But there's only so much they can do, themselves. I'll speak to them after the weekend, and hassle my doc for an emergency follow-up.

Last night was pretty miserable. I couldn't stay asleep because of insane congestion - as in so bad I had to mouth breathe as though I had a full sinus infection, and I haven't had to do on the PAP since the first few days of therapy. In addition, breathing out against the pressure was definitely tiring, even when my nose mostly cleared for the last 90 mins on one side. I feel like I would need to increase the EPR and use it full time if I stayed at a fixed higher pressure. But my AHI being in the 40s after 5 hours, despite my frequent wakings (which normally drops my AHI) so I'm pretty much sure I'll just swap back to APAP with my original settings. I have no idea what triggered the congestion because I was okay before I started and I'm pretty much okay aside from my "normal" slight sniffle now that I'm awake.
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#6
RE: Newbie: Severe CSA, OSCAR help request.
You are clearly headed to ASV therapy, and I'm pretty sure the Resmed Aircurve 10 CS Pacewave is what NHS will provide. If they offer Philips try to get the Resmed, if varies by location. CPAP or bilevel is not going to manage the very high central events your charts show. Central apnea is consistently inconsistent, so the fact it varies is the expected condition, and regardless of the pressure you set, the results will continue to vary widely. You do need to get in for an ASV Titration Test. That should open the door quickly for the machine you need. Just continue to insist on getting it. If you lose patience, you would not be the first UK patient to simply buy a Resmed Aircurve 10 ASV from Supplier #2 and pay the $1599 USD out of pocket.
Sleeprider
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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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#7
RE: Newbie: Severe CSA, OSCAR help request.
Yeah, I can't imagine I would be, though it fundamentally grates at me to have to do that. I already had to pay out of pocket because the medical profession doesn't like to diagnose autistic women, and that took me a LONG time to raise that money. But clearly, this isn't working. Thanks for the link though, I definitely won't be letting this go on any longer. It's been a decade and it's just getting progressively worse, and I'm done with feeling like garbage.

Thanks for clarifying that variability is a normal part of CSA, that explains why everything is everywhere. I mean, I guess 25-30 centrals is still better than 80+ but it really still doesn't feel that great and I can't imagine is doing me a lot of good to be so hypoxic for so long. even with the APAP. It's definitely good to be reading the posts on here and talking to someone who is confirming my thoughts on this.
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#8
RE: Newbie: Severe CSA, OSCAR help request.
Ratchick, I hope you get an ASV machine soon. You might be interested in this article:

https://jcsm.aasm.org/doi/full/10.5664/jcsm.3788

Central sleep apnea is fairly prevalent among people who use opioid medications, as you do. The article details a study showing the effectiveness of ASV for people in this predicament. Your doctor should know this, but perhaps the article will provide a little extra ammunition.
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#9
RE: Newbie: Severe CSA, OSCAR help request.
Hi I just thought I'd say good luck, your consultant will likely need to make a funding request for a pacewave CS machine but I see no reason for it being refused. or you can get your own machine but they are not cheap. The Dr needs to prove clinical need but that s all.
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