A timeline of events

I’ll go into various parts of this in more detail in other sections, but here is a general timeline of events from the start of my acute covid until now:

• December 22, 2022: I first test positive for covid (a Christmas gift from my parents!).¹ The dominant variant at the closest wastewater testing site to where I was infected was overwhelmingly the original XBB, so that is probably what I had (but this is unconfirmed). At this point, I’m coughing and have a wicked headache, chills, and a fever.

• December 23: I completely lose taste and smell. I’m shivering uncontrollably most of the day under a pile of blankets.

• December 24-30: I gradually stabilize into primarily coughing, fever, fatigue, and brain fog. The shivering, headache, and chills disappear. I’m taking dextromethorphan² for the cough during this time so that I can sleep at all. I also develop some mild bed sores because I’m lying nearly motionless for days on end.

• ~December 30: I partially regain smell and taste, which gradually improves going forward.

• ~January 3, 2023: I stop testing positive. I’m still feeling pretty terrible, but fatigue and brain fog are now the dominant problems rather than coughing and fever.

• ~January 9: I return to work part-time. (I normally work from home on the computer, and I’m extremely lucky to have an employer who’s supportive of me taking the time I need to get better.)

• February: by this time I’m mostly feeling better, just a little more fatigued than normal.

• March-April: I’m mostly back to my normal pre-covid activity level.

• May: I start to feel pretty seriously worse in terms of both fatigue and brain fog. I begin getting extremely dizzy when I go from a horizontal or mostly horizontal position to standing up.

• Mid-May: I go for the first time to the doctor, who is skeptical that there is anything wrong with me but still orders a standard panel of blood, urine, and feces tests, and a head CT scan (I have history of head and neck, though thankfully not brain, tumors).

• June: I’m noticing that I’m making some pretty serious mistakes at work due to memory and general cognitive problems.

• July: I’m further deteriorating and strongly considering asking for a medical leave from work. I lose the ability to read long-form text because I can’t remember what I read even a few seconds earlier. The results from all the tests are back except the CT scan (which I’m still waiting to have), but I decide to go back to the doctor without the CT scan becuase things are getting so much worse. I’m not getting out of bed much.

• Mid-July: I go back to the doctor; all my tests are normal. This is a different, much more helpful doctor, and he runs through a bunch of options for trying to treat the symptoms with me while we figure out what’s going on in more detail. He sends me home with a prescription for low-dose (5mg twice daily) dextroamphetamine for the cognitive problems, and fluticasone and salbutamol inhalers. (While it’s not a huge problem for me, my breathing is less free than normal, and there are huge wildfires going on in Canada at the time, so the doctor wondered whether that could be related to my further decline.) He also orders a sleep study (I have a family history of sleep apnea), more blood tests, and concurs that I should get that CT scan. Says I should drink salty electrolyte beverages to help with the dizziness (which does help somewhat).

• End of July: I start taking the dextroamphetamine, and it’s an immediate, night-and-day improvement in my cognitive symptoms. It also masks my physical fatigue somewhat. I’m able to continue working. It does, however, make me feel somewhat on-edge and jittery and disrupt my sleep, so I can’t take it after ~3pm if I want to sleep, and I don’t want to take it on the weekends. This means that I’m maybe cognitively functioning at 75% for about 10 hours on weekdays while on the medication and a zombie the rest of the time. (I still, for instance, cannot read long-form text while the medication is not active.)

  But I still can’t overstate how huge an improvement this was in my quality of life. While I spent most of this functional time on work, I did have some extra in which I was able to start reading the literature on long covid, which was key for me taking a bit more control of what was going on.

• Early August: I continue my 75% functional for 10 hours / zombie alternating pattern. I have the sleep test, which comes back with a minor finding of sleep apnea (literally the lowest score that you can have and still have it be a finding). I’m skeptical this is what is causing my problems, but the doctor recommends I have an in-clinic sleep test (and even minor sleep apnea could be making things worse), so why not? There’s a wait longer than a year, so I put myself on the list.

  I still haven’t heard anything about the CT scan wait list, so I decide to have it in a private clinic since it’s not exorbitantly expensive.³

• End of August: my prescription was only for one month, and my tests are done, so it’s back to the doctor. It’s the first, less helpful one again.⁴ He doesn’t remember me, doesn’t want to look at the tests he himself ordered, and thinks I’m just anxious. Refuses to renew my prescription. I have to demand three times and get a bit snippy for him to even open and tell me what the CT scan report says (since I don’t yet have a copy). It, like the other tests (excepting the sleep study) is negative.

• Beginning of September: I’m running out of medication, so I decide to pinch my nose and try a doctor in a private clinic.⁵ The new doctor is at least willing to listen and empathize with the fact that I’m suffering, though I don’t think he agrees with me or thinks I have long covid.⁶

  He’s willing to extend my prescription temporarily while I get more tests. This time, it’s an ambulatory blood pressure monitoring test to look into the dizziness when standing, a neuropsychological exam (the kind you get for ADHD evaluation) to better undestand what specific things are going wrong cognitively, and a brain MRI to look for things that would not have showed up on the CT scan.

  He also recommends I start wearing compression socks to help with the dizziness when standing, and once I find some good ones, this is another huge quality of life improvement. While it doesn’t really help my initial spike of dizziness immediately after standing, once recovered from that initial spike it does substantially increase the amount of time I can stay on my feet before getting dizzy again and having to sit down. This enables me to do things like spend a little time cooking for myself or have a slow walk to the corner store to get some food.

• Mid October: after several cancellations and reschedules, I have the ambulatory blood pressure monitoring test. It, combined with my notes on what I was doing at the time, clearly shows that my heart rate jumps between sitting/lying down and no-activity standing (an average of ~41bpm difference), that I do not have low blood pressure spikes immediately on standing that lead to the dizziness (unless they are on a timescale shorter than this particular test can measure), and that my blood pressure is a little on the high side across the board. (My blood pressure has been borderline high before, so this may not be new.)

• End of October: I have the neuropsychological exam. The results here are interesting even though I don’t have a “normal” baseline from before to compare to. I consistently score fairly high on most metrics, except a large dip in auditory and verbal memory (i.e. remembering what someone says, or words that I’ve read) but not visual (pictoral) memory, and a small dip in maintaining focus for longer periods of time. This is pretty consistent with my experience / self-evaluation of what’s wrong (though the visual vs. auditory/verbal memory thing is a surprise and not something I had picked up on).

• Early November: The neuropsychologist, after analyzing the exam, agrees that this is probably complications from covid, given the timing and presentation, so now I have a piece of paper in hand I can take to my doctor from another medical professional that says I’m not making it up. Huge relief to not have to fight at this level any more.

• Mid November: I go back to the doctor (the third, private clinic one) with the results of the neuropsychological exam, the ambulatory blood pressure test, and a pile of literature. I ask about the extended-release guanfacine / N-acetylcysteine combination treatment⁷ instead of the dextroamphetamine, as an alternative that would be active 24/7 without disrupting my sleep. He agrees to the guanfacine, and we start 1mg/day, trialling it for a month.

• End of November: The guanfacine is helpful (if perhaps not quite as effective as the dextroamphetamine). I’m able to function at ~60% cognitively all the time instead of just a narrow window, so I can read books a little bit and do other (sedentary) things in my free time. It’s great.

  The guanfacine also lowers my blood pressure and heart rate significantly. Surprisingly that doesn’t make me more dizzy when standing up.

  The one downside is that it makes me extremely sleepy during the day, but that mostly subsides after the first week, and completely after the second.

• Mid December: we decide to increase the guanfacine to 2mg/day in hopes that it’ll bring me up to parity with the dextroamphetamine. It’s a significant improvement (though the first two weeks of drowsiness happen again), and I can read for longer periods, am more effective at work, etc.

  Interestingly, the higher dose here also seems to help the dizziness when I stand up a little. While it still happens and is majorly problematic for a lot of activities, I stop having my vision go dark briefly when it’s particularly bad, which is nice.

• January 2024: I’m pretty stable at this point, not improving but not getting worse, and the guanfacine makes it possible to function at a minimal level.

  I decide to try the N-acetylcysteine combination treatment from the case study on my own (it’s available as a supplement, and it seems fairly innocuous as medications go⁸; the doctor was hesitant to prescribe it because he’d never used it before and didn’t know much about it).

  It’s not immeidately obvious if the N-acetylcysteine is doing anything. I perhaps have a slight improvement in fatigue levels over the course of the month, but it’s subtle.

• Mid-February: I decide to stop the N-acetylcysteine and see if I subsequently feel worse. (This brings us to the present, so it’s too early to tell what the result here is.)