I’ve had undiagnosed severe complex sleep apnea my entire life. Nobody took my complaints about sleep or fatigue seriously because I had an existing brain injury and that can just be part of the package. I didn’t get diagnosed until about a year ago when I developed a host of bizarre, completely debilitating symptoms. My sleep apnea has been well controlled for six months now.
There are no words to describe how much pain I was in before I got my CPAP machine. My chest used to feel like an elephant was standing on it, breathing was hard if I exerted myself too much, and my head always throbbed. There was this weird feeling of emotional agony that would overwhelm me from time to time, like existing itself was somehow painful.
The absolute worst thing was how stupid it made me and how difficult thinking clearly was. The brain fog decisively lifted completely a little over two weeks ago. I literally felt like a man waking up from a coma. I feel so confused and ashamed of my life. I remember trying really, really hard all these years to do right by myself and my family, but now that I can think clearly, most of the things I did before now make no sense. It’s like I spent my entire life blackout drunk or unbelievably high. There were definitely periods where I was more myself, but it subjectively feels like I woke up a couple of weeks ago in the body of a dumb, strung out twin brother I never knew I had.
I went to the doctor so many times looking for answers, to the point that I think one of them thought I was a hypochondriac because my blood work was fine and I didn’t have Lyme’s disease. After testing me for literally everything else when my symptoms became bizarre, my neurologist casually mentions that sleep apnea can cause a range of unusual effects, and that lots of people with my existing brain condition have it. WHAT?! I tried to advocate for myself, I went to different doctors, and I tried to live a good and productive life. What else was there to do? That I should have probably been screened for sleep apnea years before now just enrages me. I feel cheated, robbed of my life.
I’m in my early 30s and have nothing to show for it, COVID is raging and is a real threat to my health, and the economic and political situations in the US look bleak. I don’t expect anyone else to understand–I don’t think there are many people that post here who were on the extreme spectrum of side effects–but I just felt the need to post this. It’s hard because so few people have these effects. It’s hard enough to get regular people to take sleep apnea seriously, let alone the bizarre things I was experiencing. It feels like I got a diagnosis too late.