The End of the Taper, and Then it Got Worse

I took my last dose and I was READY to celebrate. Eight months of spreadsheets and pipettes and white-knuckling my way down a schedule, and it was finally done, I was off the stuff, and whatever came next had to be better than what I’d just been through.

I wasn’t completely naive about it, either. By that point I’d read enough to know that symptoms can hang around for another two to four weeks after the last dose, and honestly, two to four weeks sounded bad but not like the end of the world. I’d just done eight months. I could do a month of feeling rough standing on my head.

Then, after those two to four weeks, I got WORSE

I really, sincerely never imagined that things could get worse. Up and down, sure, I was expecting that, everybody talks about waves and windows, but I assumed the overall direction was forward, and how could it possibly be otherwise? The drug was out of my system. There was nothing left to withdraw from. That’s not how it works though, apparently, and finding that out in real time, in my own body, with no warning, was one of the worst parts of this entire experience.

And it wasn’t the old symptoms getting louder either. These were new ones, things I had never had in my life: allergies out of nowhere, photosensitivity, balance problems, a hard pulse I could feel through my whole body, waking up in the middle of the night in a panic and not being able to get back to sleep, nausea, and this buzzing in my brain that’s genuinely hard to describe to anyone who hasn’t experienced it.

It has a name

Eventually I found out that what I was experiencing has a name, post-acute withdrawal syndrome (PAWS), protracted withdrawal syndrome (PWS), and benzodiazepine-induced neurological dysfunction (BIND). They overlap heavily and they’re all pointing at roughly the same thing, which is the long tail of symptoms that can drag on for months or years after the last dose, long after the acute withdrawal is over.

The official line is that it lasts somewhere between six and eighteen months, which is a sentence that’s very easy to type and very hard to live inside of. And good luck getting much help with it, because a lot of doctors aren’t trained to recognize it, and some of them don’t believe it exists at all.

What I felt, and what I still believe, is that I had a neurological injury. Not “lingering anxiety,” not “your original condition coming back,” an actual injury to my nervous system caused by a drug and by the process of coming off it. Once I started thinking about it that way, a lot of things made more sense, including why “just give it time” felt like such an inadequate answer.

What that year actually looked like

Not heroic, I’ll tell you that much. I took sick leave. Some months I was so discouraged that I did absolutely nothing except exist and wait, and other months I was completely locked in, reading everything I could find. It went back and forth like that for a long time.

After about six months of not really getting better, I started experimenting with supplements, which is where the next part of this story begins, and where I finally started paying serious attention to a molecule I’d first seen mentioned months earlier and dismissed as impossible to get.