I can’t remember a time when I haven’t been exhausted. No matter how many hours I sleep, I always wake up tired. I toss and turn all night. I’m miserable if I don’t get at least eight hours of sleep. I put a lot of pressure on sleeping in on the weekends because that’s my time to catch up on rest, and it makes me incredibly anxious when I can’t do that. I’m up using the bathroom three to five times a night. For a long time, I accepted that as my norm, even though it’s completely unsustainable. I told myself that’s just how my body works, and there’s nothing I can do to change it. Chronic fatigue is a byproduct of chronic illness, and I think it’s something I’ll always experience. Having a disease that has no cure, my body is constantly fighting itself, and my nervous system is stuck in fight-or-flight.
Once I got my Oura ring in May, I realized there might be something else going on. It kept telling me my breathing regularity during sleep wasn’t good, and it also showed that I was getting very little deep sleep and not enough REM sleep, so my body was never really able to recover from the day before. I also frequently get alerts saying that my heart rate is too high at night for my body to go into recovery mode, despite having my heart rate suppressed by several medications. That comment was extremely eye-opening to me. I offhandedly mentioned it to my cardiology team, and they very matter-of-factly said I probably have sleep apnea because it’s very common in patients with atrial fibrillation like me. Of course, I had heard of sleep apnea, but it’s not something I ever considered because I’ve never been a snorer (at least, I didn’t used to be). They referred me to a sleep doctor, and I started to get very excited about the possibility of finally feeling rested. Around the same time, one of my close friends was diagnosed with pretty severe sleep apnea. We got to talking, and I realized I had many of the same symptoms.
Before I even saw the sleep doctor, I did an at-home sleep test. I was given a kit with equipment to strap around my body that monitored things like my breathing and heart rate to determine whether I was having apneas during the night. The equipment wasn’t as uncomfortable as I expected, but it definitely wasn’t an ideal way to sleep. A few days after I returned it, I got my results. They provide this actually pretty cool report that not only tells you how many apneas you had during the night, but also how long you slept on your back, side, or stomach, your heart rate and its spikes, and how many times you snored. The results diagnosed me with mild obstructive sleep apnea.
After my diagnosis, I met with a sleep doctor. What is nice about sleep apnea is that there’s a problem, but there’s also a clear and widely used treatment path. Or so I thought. Even though I only have mild sleep apnea, I have severe exhaustion, so CPAP therapy is the route my doctor wanted to take. This appointment was at the beginning of September, and I was so excited thinking I could have a CPAP machine within a few days and finally start getting some sleep. That excitement didn’t last long. My doctor changed her tune pretty quickly when she realized I have atrial fibrillation.
Because of my atrial fibrillation, she said I had to spend the night in a sleep lab at the hospital so someone could manually titrate the CPAP and make sure any heart episodes wouldn’t interfere. Okay, that’s fine, I thought. Then she told me it would be months before I could get an appointment. That news made me really upset because I went into the appointment assuming I’d have a CPAP machine within the week.
After months of waiting, it was finally time for my night in the sleep lab during the first week of January. I was counting down the days until I got a call the day before New Year’s Eve, telling me my insurance had denied the visit and wanted me to do an at-home automatic CPAP titration instead. Apparently, no one had explained to them why that wasn’t possible for me, and my doctor was out for the holiday, so she couldn’t write an appeal in time. I had to give up my appointment. Why this only went through insurance four days before my appointment, during a holiday week, I’ll never know. I had already been waiting five months, and I was crushed. I was then told it would be another four months before I could get a new appointment.
It turned out I was able to get an appointment in February, and my doctor sent in an excellent appeal letter, which gave me some hope. But once again, the appeal was denied, and now I have to move forward with at-home automatic CPAP titration, not knowing if it will actually work with my body. Don’t get me wrong, I’m very glad I don’t have to spend a night in the hospital connected to a million wires, probably not getting much sleep. But this could have happened back in September.
In the months I’ve spent waiting for this in-lab CPAP titration, my symptoms have gotten so much worse. I experience terrible night sweats that even having the window open when it’s below zero outside can’t help. I start and end my day with splitting headaches, and sometimes I even wake up in the night with them. I’m more exhausted than ever. It’s affected my mental state, too. Sleep is always at the top of my mind. I’ve missed out on social gatherings. I feel extreme anxiety when I know I’m not getting enough sleep. I’m at the point of desperation for good sleep. When your body is constantly fighting itself, you need sleep to recover. I’m not getting that. I’m already miserable being in pain all day; I don’t need exhaustion on top of it.
Because of the strong connection between atrial fibrillation and sleep apnea, I can’t help but wonder what came first. It feels like a chicken-and-egg situation I’ll probably never have an answer to. Despite the long road it took to get here, I’m grateful to have access to the resources needed to treat this condition and, hopefully, improve my arrhythmias in the process.
