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Under Pressure


What a (new) year. I’m trying to focus on vaccines and stimulus checks, but when your boyfriend needs special papers for the National Guard just to get to work… it’s a lot, you know? Of course you know. Aside from Phoebe Bridgers smashing her guitar, the news has been relatively quiet for the past few days, and I’ve enjoyed it.

My personal news is always in motion. A year-long neuropathy saga recently arrived at an underwhelming conclusion. After early tests and a skin-punch biopsy both indicated sensory neuropathy, further examinations and bloodwork concluded… nothing. I don’t have neuropathy, which is good, but I don’t get to try IVIG therapy, which is unfortunate, and we don’t know why those first tests came back positive.

Migraine land is a bit ambiguous too, but mostly better. I had a few days in January and this month without headaches. A few is better than none! We discontinued Deplin, because it didn’t do much, but started getting odd bouts of jitters, so we restarted it. Once that’s straghtened out, we’ll give Pristiq a shot, to see if it helps my head. Just last week, I had my third Vyepti infusion (a CGRP blocker for migraines), and… it might be helping a little? Not sure yet!

300mg took about 30 minutes.

When my head is not hurting, I’m occasionally able to make use of these rad new headphones. I sold some gear and haggled a really sweet price on some ATH-R70xs, and boy do they deliver! All the little details sound 3D, like you could reach out and grab every guitar strum. I wish I could casually listen to more than a few songs without getting exhausted. For whatever reason, I can spend a good while longer actually making & mixing music before the mental fatigue hits, and these are great for that.

In terms of limitations more generally, Abilify has recently been helpful. When I started in late December, it was maybe a little too helpful–after improving, I immediately pushed hard against my limits for a few days, and on NYE, I got wrecked by the worst crash I’ve had in ages. A fitting end to a ridiculous year, I guess. It took weeks to fully recover, but I still feel positive about Abilify. It increases my buffer zone. I can do more. It’s nice!

My POTS situation, however, did not resolve the way I had hoped. I talked to my cardiologist about my tachycardia acting up again, and as expected, a small increase in atenolol brought my heart’s wild leaps under control. But even before we increased it, I was having frightening bouts of weakness in my arms, where my whole body just felt disconcertingly off. With a blood pressure cuff and a tracking app called Welltory, I eventually realized the cause was hypotension, which can be fairly dangerous. We got it under control, but only by reducing my atenolol doseage. So no more weakness, but even more heart racing.

After two years of zero symptoms, I now have to manage my POTS (Postural Tachycardia Syndrome) constantly. Blood pools in my legs whenever I sit in a chair or stand up. This forces my heart to work extra hard to move blood to my organs, so it beats much faster. Drinking more fluids increases the amount of blood in the body, easing the load on my heart. Salt helps retain fluids, and compression socks reduce the pooling in my legs. And for now, that’s everything–water, salt, & socks. I have to use all three, all the time, just to walk to the kitchen without pushing my heart rate to 110.

Compression socks, but make it fashion.

Honestly? It sucks. It’s hard to sit at my studio desk, and it’s hard to play instruments. I just want to stay horizontal, so I don’t have to deal with it, but I desperately need the small amount of physical activity I can handle. Without it, all my problems (including POTS) get worse. It’s going to take a while to get a grip on all of it.

In the meantime, I’m still making music with whatever is nearby. Mostly, I use my iPad, but lately I’ve been messing with Brendan’s old MPC1000, a digital sampling workstation from the aughts. I can do all the same things on my iPad, but with an MPC, I don’t have to look at a big, bright screen as often. It’s a little easier on my brain. Plus, it can be useful to work within the limitations of a device like an MPC. It’s more focused.

Beats for days.

Speaking of which, I should really get back to it! ‘Til next time–

Yours Faithfully,

PS If you’re still catching up on my health story, here’s yr Cliff Notes. If you want these updates in your inbox, head to my profile page, scroll past the subscription levels, & click Follow (it’s free!). And if you know anyone who might be interested, feel free to share!

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