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Request for help making sense of my CA numbers and guiding further treatment
#1
Request for help making sense of my CA numbers and guiding further treatment
Not sure how to format this, so I will lay it out narratively.

Been having serious sleeping issues for 5 years, starting with a bout of whiplash at the end of 2018. At first sleep was fitful, during a difficult and stressful romantic relationship, and I was sleeping sometimes 10-12 interrupted hours in a very noisy environment. Chalked it up to the situation, nothing physiological. Starting in 2020, I ceased to be able to sleep more than 6h per night. Like clockwork, I would wake up at almost exactly 6 hours, and be unable to return to sleep.

 In early 2022, I entered another very stressful relationship where my partner would begin arguments always before bed, making sleep difficult. Continued to attribute most of my problems to stress. After losing someone dear to me to cancer in the spring of that year, which sent my stress through the roof, I had my lingual frenulum cut in a frenzy, as I had a moderate case of ankyloglossia and was blindly seeking solutions. Instantly, my sleep became significantly worse. By the beginning of 2023, I began experiencing extreme acid reflux 24/7 that made sleeping difficult. There was a solid 6 month period where I could not sleep more than 2-4h because of it, during which I tried every solution, from an elevated pillow, to medication. At this point, I was starting to suspect there was a physiological problem, as other problems like inexplicable, crippling joint pain simultaneously arose.

Late summer 2023, in August, I was finally given a take-home sleep study for which I'd waited about 6 months, through the public system. They diagnosed me with mild OSA, and recommended a wide range of 6-15 cmH20. Coincidentally, the relative who had passed away had left behind a CPAP (it is not covered here and would have been beyond my means). With help from a family member I outfitted myself with a proper full mask (nose is constantly blocked due to allergies and deviated septum). I was not able to get my hands on the machine until fall of 2023.

Since last November, I've been using the CPAP to little effect. I have been diligently checking the seal on the mask, cleaning the machine, wearing earplugs and a sleep visor. Since the addition of severe acid reflux, my sleep is now somewhere between 4 and 6 very shallow-feeling hours per night. I usually wake up in a 4-6h window, and if I do manage to, after much deep breathing and meditation, fall back to sleep for another 2-3 hours, I never feel rested. I can't raise the pressure above 7, as my lower esophageal sphincter weakness allows my belly to fill with air, waking me up.

I recently tried my last resort, consulting this forum's wiki, in using a soft cervical collar to no avail. The first night, it brought my AHI down to 1.5, with no perceivable difference in tiredness or typical headache upon waking. Subsequently, my AHI returned to its prior norm and I have begun to a feel a mild neck ache during the day. I checked the tightness, to ensure it was sufficiently loose. I've considered that with my mouth having formed to accommodate my ankyloglossia, it's possible that my tongue is falling back into my throat. My sewn tennis ball-backed shirt to keep me on my side doesn't seem to ameliorate my sleep, if that is the case. I've done months of tongue and neck exercises; recommended physio for frenotomy post-op and whiplash both. I've also used both inspiratory and expiratory muscle training devices. No dice.

What I find puzzling is that for the duration of using this machine, it tells me that the OSA component of my AHI is between 0.1 and 1.5, never more. My total AHI average is 3.6 iirc, the majority of which is comprised by CA (usually 2+). Knowing that I've had three instances of whiplash, I specifically asked the pneumologist whether my results suggested Central Apnea, and she said "no". I don't know if that is a flaw of the take-home Resmed test machine; if it is less sensitive to Central Apnea. Throughout the entire treatment period, my AHI is consistently under the clinical line of 5, with a handful of nightly exceptions.

My GP has told me multiple times that it is probably anxiety, and that I am experiencing psychosomatic disturbance of sleep. I'm not sure if this is true, given that I've tried meditation, rigorous exercise, and various licit and illicit substances to curb the anxiety that the sleep deprivation causes, to moderate conscious success. He attributes my concerns about the CA to unhealthy perseverance. I myself don't know how I would differentiate treatment-emergent CA from prior CA. 

After all the effort I've made to tackle the potential psychological contribution, I can't help but think the bulk of my sleeping trouble is physiological. What can or should I do? I am willing to provide OSCAR data, with the caveat that some of the results may be slightly polluted by the waking periods in which I am desperately attempting to go back to sleep. I think that explains some of the terminal CA's and hypopneas on the chart. There are nights where I've recorded in my notes the exact waking time for one or another of my sleep disturbances. I can't keep going on like this. It's hard to keep a job. I feel completely depleted and flattened at all times. There is no reprieve and I am always strung out.
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#2
RE: Request for help making sense of my CA numbers and guiding further treatment
If your pulmonary doc says CAs are not your problem then they are not, assuming she was going by your sleep study.  In that case the CAs are treatment-emergent and will lessen as time passes.  This is extremely common and nothing to worry about.

As to therapy, your pressures are too low for an adult.  I suggest you raise your low-pressure setting to 7 and your upper-pressure limit to 12.  I also suggest that you turn ramp off if you are using it, and turn EPR on, set to 3.  Those changes should help with your treatment and comfort.  Best of luck! Smile

Try not to let your apnea get you down. It takes some time for everyone to adjust, but adjust you will if you stick with it and allow folks here to help you.
Machine:  ResMed AirCurve 10 Vauto
Mask:  Bleep DreamPort Sleep Solution
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#3
RE: Request for help making sense of my CA numbers and guiding further treatment
If this in fact the Elite, isn't that static CPAP but with EPR?

Any idea what your OSCAR charts look like? Post a few recent ones standard format. Others may ask for follow-up zoomed in ones.

Also any specifics on the detailed results of your sleep study? Did Central Apnea appear and the medicals are just stating "don't worry about it". Were there CA actually present on the study session minus CPAP?

If there are CA on that sleep study, there's a clue on if they're treatment emergent Central Apnea or not.
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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#4
RE: Request for help making sense of my CA numbers and guiding further treatment
Please post some OSCAR charts. Links for downloading, installing, and formatting the charts are in my signature. Once we have data we can offer advice based on what is happening.

Note that your Elite is a fixed pressure machine with EPR (as Dave noted). It is very limited in what it can do. Whether we can tweak it sufficiently to help is unknown until we see the OSCAR data.
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#5
RE: Request for help making sense of my CA numbers and guiding further treatment
It is static, as far as I understand. 

Due to the way the system is organized here, they would not give me access to detailed results, in spite of my asking. I don't quite understand how the test worked, because I am an obligate mouth-breather during sleep, and there was only a nose tube for the test. It was the take home model for Resmed, not sure on which model exactly. There was a harness that I wore, a blood oxygen monitor for my finger. When I asked the pulmonologist, she didn't say whether I had had any CA events during my test, only that treatment emergent CA is common and that I should not worry. However, at this point we're at the 9 month mark with no change.

I've attached some OSCAR charts. I couldn't get the "snore" graph to fit in them, but in each of these nights (which I filtered for ones that appeared typical in metrics), there were only 1-3 shallow snoring events marked. For what it's worth, previous partners have told me that I never snore that much.


Attached Files Thumbnail(s)
           
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#6
RE: Request for help making sense of my CA numbers and guiding further treatment
When they mention CA, they may tell you not to worry, but there is enough for them to see it. Most are CA blind.

Remind me, this was a test without CPAP or with? If you say without CPAP, is impossible for treatment emergent CA to be present. There's no treatment ongoing in that case. It's just an apnea presence test.

Edit, was this treatment emergent CA during that August test? Your post narrative reads as if there's no CPAP, until the one you're using at home.
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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#7
RE: Request for help making sense of my CA numbers and guiding further treatment
There was no CPAP during the test. It was a little box I wore on my chest via harness, with a fingertip blood oxygen monitor and a pair of nasal tubes which I was to return to the hospital the next day. I was surprised they gave a diagnosis at all, since I cannot breathe through my nose when laying down. Not sure how they were detecting my breathing. 

There was no formal determination of treatment emergent CA. It was merely what the pulmonologist suggested when I made a tele-appointment to talk to her. This was after I had seen no results for 3-4 months and had noticed the machine was saying I was only having CA events with some hypopneas. She told me not to worry and that there were no more tests they could do. When I followed up with the GP at 8 months, he told me I am probably paranoid and reiterated that there were no more possible tests.
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#8
RE: Request for help making sense of my CA numbers and guiding further treatment
Don't you love the patronizing medicals? I've faced the accusation that CA were my fault because I thought about them, and my oxygen level was low because I used a pulse oximeter to check it. Which apparently is very dangerous, I'm not medically licensed to use said oximeter in checking oxygen levels, therefore I wasn't using it correctly. No, I'm not joking about what I was told by Dr. Quacks.

OK well here it is, if you weren't using CPAP there's no way for treatment emergent Central Apnea on the test. If they try to say they are present during CPAP therapy usage, it's possible but not guaranteed.

I think we're going to have to try to avoid CA with settings. Beware though this may make other items increase. Then it becomes mitigation of both Central and Obstructive sides.

The Elite... So no pressure range to worry much about. Any Ramp time if applicable should be off.

EPR, is this already off or 0?

Those 2 items are most of the available avoidance plan really. You're already on static pressure otherwise.
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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#9
RE: Request for help making sense of my CA numbers and guiding further treatment
I'm sorry you've had an equally difficult experience with the professionals. It's unfortunate that they aren't as compassionate as good care requires. 

I'd turned EPR off for reasons I'd forgotten, though I know I got the idea here. I'll remove the ramping. 

What do you think of the OSCAR charts? I wake 2-3 times a night, have incredible difficulty getting back to sleep. I am prone to bouts of sexsomnia, which I find deeply troubling, both morally and because it is a parasomnia, indicating disturbance. Upon waking, I always have a terrible headache and am fatigued throughout the day. I've ruled out migraines, dehydration. This cannot be anything but apnea, it seems to me. My CA and hypopneas only amount to between 2 and 4 per hour, on average. The worst (rare) nights, it'll go as high 6. This is subclinical to "mild". How can my symptoms be so severe?
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#10
RE: Request for help making sense of my CA numbers and guiding further treatment
So I went back and looked through the spinal MRI I received last year after having a burning feeling on my lower back. They found an "outline of osteophytosis between C3 and C4" as well as "discreet bulging which causes an imprint on the thecal sac, with minimal uncoarthrosis impression" in the same position (C3 & C4). In all cases they say "no stenosis". Could these features contribute to central apnea? 

Turning off EDR and ramping has made little difference. My numbers have climbed to between 4 and 6 AHI per night. Headaches upon waking that persist throughout the day.
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