So today I finally had a phone appointment with the sleep doctor, following up on the sleep study I had done about 6 weeks ago.
The results are… inconclusive. And frustrating.
According to all of the tests and metrics that the sleep clinic is able to do, I sleep perfectly fine on the CPAP machine, and every indication – including with an EEG – is that I only have obstructive apnea, not central.
But from experience and what I’ve been told by the few people I’ve slept with, I know that there are no signs of obstruction, and I simply stop breathing in my sleep.
And apparently on CPAP I am measured as falling asleep in a reasonable amount of time, but I am positive that on nights where I’m using the CPAP I don’t fall asleep for at least an hour, and I wake up frequenly throughout the night. And that is how I felt when I was in the sleep clinic, too.
When I use the CPAP I am absolutely exhausted all day. Without CPAP I am merely fatigued.
I would love to actually be rested.
The sleep doctor has no idea what’s wrong. I argued with her for a bit about my experiences vs. what the equipment had measured.
She also had me do a drug screening to make sure I was telling the truth about my various usages. I have been completely, totally honest about everything – about how I occasionally use cannabis in the afternoons and sometimes in the evening to take the edge off the pain, about how I don’t use opioids (and have only used them once since starting on the nortriptyline, and it was a terrible experience that I don’t care to repeat) – but the drug test came back negative for cannabis but positive for opium. And not even oxycodone, but for morphine and heroin. I’m pretty sure I’d know if I were using those!
And of course at the very mention of cannabis she immediately went into lecture mode about how it is known to disrupt sleep. Which, sure, it’s true, but except on very rare occasion I only use CBD, and not even that much, and not to the point that it makes me sleepy, and usually 6 PM at the latest. And my sleep is the same whether I’ve used it or not, and I often go weeks between uses.
My dad has gone through similar things with his sleep doctor, and I know he has a similar problem to me (except he also snores in addition to simply stopping breathing), and like me he finds that CPAP only makes things worse for him.
I wonder if there’s some other form of apnea which isn’t yet known, where breathing stops but it doesn’t register the same on an EEG as typical central apnea.
Meanwhile, the clinic apologized for not noting I’d stopped using the CPAP before they converted my machine to a purchase. Since I’m not using it anymore they suggested I sell it on Craigslist or donate it to charity or something. It’s a pretty nice machine, for those who would benefit from it. From my EOBs it looks like it cost a total of $812, of which I have to pay $147. Could be worse, I guess. And lucky me, my sleep study was completely covered by Kaiser, which is good because it was well over $3000. I am glad I opted for the best possible insurance at my job.
The sleep doctor suggested I talk to the rheumatologist again, because maybe there’s more going on with my fibromyalgia to heck up my sleep here. She doesn’t think this fatigue issue is anything that she can treat at this point.
I just feel so helpless and lost and this is so intensely frustrating. I’m tired and I’m in pain and I feel sick all the time and I just want to fucking be better. I’m far from the worst I’ve been but it’s so hard to hope for anything to improve right now and I want to be able to get on with my life.
I need help, but I don’t know where to turn now. I guess it’s time to make another appointment with the rheumatologist. Maybe he’ll have some more ideas.