Current state of my health

So lately I’ve been experiencing difficulty breathing. Do you know that feeling that comes after you hold your breath for a long time after exhalation (so when your lungs are empty)? That need to just get as much air in your lungs as quickly as possible? Mix that with the feeling of heart palpatations and that’s what I’ve been going through. It started on the twenty-fourth of May. I was taking percocet at the time and I had increased my dose to two 5mg pills twice a day, and one every 4 hours (with a daily max of 7 pills). So I thought maybe these issues could be caused by the percocet, a phenomenon called respiratory depression (sometimesĀ  brought on by opiods taken in high doses).

That would be an alright paradigm if these ‘episodes’ weren’t so paroxysmal. Since my intake of opiods has both remained stable and actually increased, if respiratory depression was happening, it would be constant. And since we’ve titrated very slowly, and were on such a low dosage, I think the opioid-induced-resiratory-depression model can be thrown out the window.

The symptoms were brought on initially only at night, while lying flat on my back preparing to sleep. So I thought, well, maybe this is mitral valve prolapse (a condition relatively common to my connective tissue disease). Although I have not completely ruled that out, I don’t think its the primary problem here. So then I moved to COPD — because I do have issues with my left lung (crackling and constant cough after having bronchitis). Again, although I can’t rule that out (and have yet to see a respirologist or pulmonologist), I don’t think its the primary cause.

I have atlanto-axial instability, and so recently I’ve been trying to connect the two as a possible explanation for things — albeit a much more insidious one. So what I’ve come up with is a working paradigm that includes both my AAI and… central sleep apnea. Central sleep apnea is usually caused by arthritic and/or mechanical changes to the cervical spine, which in turn causes compression of the spinal cord.

I think this is the best explanation.

So right now I’m waiting for an appointment with a sleep clinic to have a sleep study done. On the one hand, I’m anxious to receive some answers; and slightly happy that I can kill two birds with one stone when I get my cervical fusion. And on the other I’m nervous — I really don’t want to hear that I stop breathing while I sleep…

So, originally these breathing episodes started when I was about to fall asleep, lying on my back, at night. Now, they occur throughout the day. When I’m sitting at my desk, I’ll have to take deep breaths. When I’m driving, the same deal. I mean, its easy to see how disconcerting that can be just during the waking hours, sleep brings a whole new level of anxiousness. I literally hate sleeping; I’ve never really liked it — I’d much rather stay up 24h a day… that is, if such a thing was physiologically feasable. Now, I dread going to bed. I’m in like this catatonic stupor all day from exhaustion and lack of sleep. My sleep cycle kicks my circadian rhythm in the teeth.

I guess I wanted to publish this as a little farewell note in case things do take a turn for the worse. I hope dearly they don’t, both because I don’t want to die, and because I want people to remember me as a better person. I’ve gotten really sick these past 6 months, and my family recently went through a divorce (not that these events excuse my behavior, they just provide context), so I haven’t been the best person I can be — I’ve actually been kind of a dick.
Although this sucks, and I wouldn’t wish anyone else to go through this, I’m kind of glad I am — that is, I’m glad if I live through it… (anti-jinx!!). Because its really opened my eyes to a whole new way of looking at things (more on this later!).







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