Rare Side Effect? Not Rare Anymore!

I’m doing this post the old-school way, where I don’t have a plan or outline or any research done for it. This will be a stream of consciousness post like I used to write when I had a blog in middle school. If that’s not your thing, no worries, check out one of my more in-depth posts.

Here’s the situation: I am a covid long hauler and it triggered POTS for me. POTS, or postural orthostatic tachycardia syndrome, is a condition where my body doesn’t regulate my blood circulation well which means my heart has to work hard to make that circulation happen. For a more eloquent description, check out this page.

One other thing you need to know about me: if there’s a rare side effect, I’m likely to get it. I don’t tolerate most medications because of rare side effects or very intense side effects. When first trying to treat my POTS, I was put on a few beta blockers in succession but all of them exacerbated my asthma. I was finally put on a drug we’ll call C, which did an amazing job regulating my heart rate.

But it did come with a side effect of flashes of light in my vision, and that turned into light sensitivity to the point where I couldn’t not wear my sunglasses outside and I needed protective glasses when in class because of the projectors and fluorescent lights.

I was switch to a drug we’ll call D that’s a calcium blocker. The first hurtle was that it increased how much of my daily inhaler was absorbed into my blood, giving me the steroid shakes and raising my heart rate. I stopped doing my inhaler until I could talk to my provider and was better though my heart was still unregulated. Today, I tried the half dose of my inhaler in hopes that it would fix the absorption problem. Which it didn’t; I spent all day lying down just to keep my heart below 110. It’s the first time I’ve gotten high heart-rate alerts on my Apple Watch and they consistently happened if I was sitting up.

So now I’m coming off of it, because this is not sustainable, and I need to figure out next steps now. I have a feeling I’ll be back on C and just working around the light issues.

This has all been incredibly frustrating. I forgot how much the C helped; my heart rate has risen 20-30 BPM over all since I stopped taking it. I find myself with air hunger (gasping for air) more and needing to sit because the exertion of my heart is exhausting and the lack of blood flow makes me dizzy. I seriously forgot how bad this is when I’m unmedicated.

That’s where I’m at. My asthma’s exacerbated, my heart rate’s uncontrolled, and I’ve been dealing with a steroid storm all day (which def didn’t help the heart rate thing).

All of this to say: med changes are hard and they’re shitty and I’m sending spoons to anyone else in this situation.