01-10-2024, 10:36 AM
Long time CPAP user, first time here. Any insight is appreciated!
Greetings all. Please forgive a bit of backstory. I would like to think folks who have been at this a while will be able to relate, although I wish none of this needed to be true. I will try to keep it to the most relevant bits. My journey with CPAP started back in 2015, although simply getting diagnosed with sleep apnea at the time was an absolute chore. I do not remember what the take home study reflected, but not enough for the doctor at the time to declare anything. My employer at the time had partnered with Fusion Health and was sponsoring a free CPAP and regular supplies for all employees, as long as I could get a diagnosis. I pushed hard to get an in-clinic study approved, and pushed even harder to get a diagnosis when they told me that I was just borderline. They sent me a Resmed AirSense 10 (or was it 9? No bother.), and I settled in to it as best I could with my stressful job and everything else going on.
In 2018, I moved to a new city and found a new sleep specialist (pulmonology). Not once did I feel as if I were improving with CPAP. I just knew I could not sleep without it. This doctor would tell me my numbers were good, but I would tell him I am not feeling any better. This led to me pushing for another in-clinic sleep study, because with all the electrodes and sensors and data, there /should/ be some signal in all that noise. The AHI number came back good/under control. That doctor told me as much, and told me that I was feeling better. I laid into him with my voice and stopped shy of accusing him of gaslighting. I regret not going that far. Small regret in the grand scheme. That was the last time I saw that doctor. While I laid into him, I demanded him give me some recommendations for area dentists who do oral appliances, or really anyone who does any proven alternative therapies.
In my desperation, I found a nearby dentist who set me up with a ProSomnus appliance, although that was not covered under insurance and was not an easy pill to swallow. That was fairly decent, but my quality of sleep was never above that of CPAP. The main difference was the oral appliance was much easier to tolerate at the time than CPAP. Then COVID swept through, and I went back to that dentist almost never because not one person was wearing a mask. Until about 1-2 years ago, the appliance was okay, until it started to break down, which was not entirely unexpected.
Since I did not have any intention of going back to that dentist, I asked my GP for a new recommendation, which led me to my current ENT. He's... alright, but the kind of doctor where you really need to have a plan when you meet or else he's just rushing off to the next appointment. His PA is a bit better in that regard. At least she seems to actively listen. It is through her that I have my current CPAP. It is a 3B Luna, so not OSCAR-compatible. For the time being, I am just glad that it is reasonably tolerable, but this is not sustainable. I still do wake quite a bit, but usually just a gradual wake and an urge to roll over. Since I cannot use OSCAR, I got an Emay brand pulse oximeter so I can maybe generate some actionable data to present to the PA. She's leaned on AHI numbers a bit, but seems somewhat open to exploring when I tell her that CPAP is only just helping, and cannot be the whole picture. She also suggested to lose weight, which I strongly countered that I have mostly maintained the same weight for years, and even just a few years ago I was maxing out two double-stacks on cable pulls at the gym... while all of this was going on. Not that I necessarily recommend that, but I was fired up.
So, this is where I ask for help and advice. I do not know quite how to read the data from the pulse oximeter, but the app can produce a really nice summary, as well as dump the data to .csv. One thing I've noticed in the summary is that my SpO2 < 94% for each night usually runs between 10-15%. This seems... maybe not good. It has only been quite recently that I learned of UARS, and thought of OSA as part of the 'spectrum' of sleep disordered breathing. Big thanks here to TheLankyLefty27, VikVeerENTSurgeon, and CPAP friend, all on YouTube.
Any help, advice, etc. is greatly appreciated. Please ask any questions. In time, I would like to also help others on here, as well. Thank you!
In 2018, I moved to a new city and found a new sleep specialist (pulmonology). Not once did I feel as if I were improving with CPAP. I just knew I could not sleep without it. This doctor would tell me my numbers were good, but I would tell him I am not feeling any better. This led to me pushing for another in-clinic sleep study, because with all the electrodes and sensors and data, there /should/ be some signal in all that noise. The AHI number came back good/under control. That doctor told me as much, and told me that I was feeling better. I laid into him with my voice and stopped shy of accusing him of gaslighting. I regret not going that far. Small regret in the grand scheme. That was the last time I saw that doctor. While I laid into him, I demanded him give me some recommendations for area dentists who do oral appliances, or really anyone who does any proven alternative therapies.
In my desperation, I found a nearby dentist who set me up with a ProSomnus appliance, although that was not covered under insurance and was not an easy pill to swallow. That was fairly decent, but my quality of sleep was never above that of CPAP. The main difference was the oral appliance was much easier to tolerate at the time than CPAP. Then COVID swept through, and I went back to that dentist almost never because not one person was wearing a mask. Until about 1-2 years ago, the appliance was okay, until it started to break down, which was not entirely unexpected.
Since I did not have any intention of going back to that dentist, I asked my GP for a new recommendation, which led me to my current ENT. He's... alright, but the kind of doctor where you really need to have a plan when you meet or else he's just rushing off to the next appointment. His PA is a bit better in that regard. At least she seems to actively listen. It is through her that I have my current CPAP. It is a 3B Luna, so not OSCAR-compatible. For the time being, I am just glad that it is reasonably tolerable, but this is not sustainable. I still do wake quite a bit, but usually just a gradual wake and an urge to roll over. Since I cannot use OSCAR, I got an Emay brand pulse oximeter so I can maybe generate some actionable data to present to the PA. She's leaned on AHI numbers a bit, but seems somewhat open to exploring when I tell her that CPAP is only just helping, and cannot be the whole picture. She also suggested to lose weight, which I strongly countered that I have mostly maintained the same weight for years, and even just a few years ago I was maxing out two double-stacks on cable pulls at the gym... while all of this was going on. Not that I necessarily recommend that, but I was fired up.
So, this is where I ask for help and advice. I do not know quite how to read the data from the pulse oximeter, but the app can produce a really nice summary, as well as dump the data to .csv. One thing I've noticed in the summary is that my SpO2 < 94% for each night usually runs between 10-15%. This seems... maybe not good. It has only been quite recently that I learned of UARS, and thought of OSA as part of the 'spectrum' of sleep disordered breathing. Big thanks here to TheLankyLefty27, VikVeerENTSurgeon, and CPAP friend, all on YouTube.
Any help, advice, etc. is greatly appreciated. Please ask any questions. In time, I would like to also help others on here, as well. Thank you!
