06-08-2024, 03:19 PM
(This post was last modified: 06-08-2024, 03:27 PM by jostlereptile.)
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.
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.
