So there I was, back on my 2 mg of clonazepam, reinstated by an emergency room, feeling exactly as terrible as before but now with a shiny new piece of information: the medication I had been taking exactly as prescribed for years was capable of doing THAT to me if I stopped it. And that’s when I finally started reading properly.

What I learned in about twenty minutes of googling

You should NOT stop a benzo abruptly. Seriously. It’s not a “listen to your body” situation, it can be genuinely dangerous, and it took me one evening of reading to find that out, which raises the obvious question of why nobody had mentioned it to me in the years I’d been on the stuff.

That’s also when I found the Ashton Manual, which is basically the reference text on benzodiazepine withdrawal, written by a doctor who ran a withdrawal clinic for decades, and it’s free, and it’s been sitting on the internet this whole time. Reading it was the first moment in this entire mess where I thought: okay, somebody actually understands this. I also read that a lot of doctors aren’t familiar with benzo withdrawal, or treat it lightly, or recommend a taper so fast it’s almost guaranteed to go badly, which was information I was about to confirm in person.

The weird look

At my next appointment after the ER visit, I mentioned the Ashton Manual, and my doctor just looked at me weird. He said a taper over a few weeks should be fine. A few weeks. Where I live it’s not easy to see a specialist (it can take months, sometimes years), so there wasn’t a second opinion waiting around the corner, and I didn’t want to spend my remaining energy fighting somebody who’d already made up his mind.

So that settled it. I was going to have to take this into my own hands, which honestly suits me fine, because after everything that happened I’ve become a bit of a DIYer and I genuinely love experimenting.

The plan (oh, I had a plan)

Following the Ashton Manual, I asked to be switched to diazepam, which has a much longer half life and lets you come down in small smooth steps instead of crashing between doses. That part my doctor agreed to, so at least we got there.

Then I skipped the conventional wisdom of cutting the pill in half every week, because the more I read, the more a hyperbolic taper made sense to me: the reductions get proportionally smaller as the dose gets lower, because the lower you go, the more each milligram is actually doing. Big steps at the top, tiny ones at the bottom.

And yes, yes, I did plot it all in Excel and plan the dosages in advance, because I’m that kind of person. I’m not a rigid person in life, but I was so excited to finally have a plan and to follow it. I started out planning six months, then with the diazepam switch it stretched to about eight, and my schedule ended up looking like this:

Armed with a can-do attitude, a willingness to get better, a scale and a pipette, I started my journey.

How did I feel during the taper? Horrible.

Although, and this is the funny part, not at first. The first reductions weren’t nearly as bad as I’d expected. I noticed some increased anxiety, lighter sleep, a bit more sensitivity, but I could still function, and I remember thinking, maybe this won’t be as difficult as everyone says.

Then things changed. I started feeling less drugged and less sick, which was wonderful, but other symptoms moved in to take their place, notably the zaps. I’d get overstimulated by noise, bright lights, busy environments, or just too much activity in a day. My emotions were amplified, so I could be anxious one day and completely exhausted the next, with not much say in the matter.

I kept to the schedule anyway. I took some time off work here and there, my social life and my family life definitely suffered, but I could see the light at the end of the tunnel, and that kept me going.

Looking back with kindness

Here’s the honest part: six months (then eight) was probably too fast, and my enthusiasm got the best of me. I should have listened to my body more and stretched it out longer. But what are you gonna do when you have all that Excel spreadsheet already done? Not follow it? Not on my watch.

I’m joking, a bit, but it really was hell, and I was a bit overconfident and I paid the price. It’s easy now to say I should have done this or that, but at the time I felt so sick, so poisoned, that all I wanted was OFF. You have to look back at yourself with kindness, even when you were a little stupid.

Somewhere in there I also started therapy, CBT for the anxiety, and got really serious about my sleep and entraining my circadian rhythm, which turned out to matter more than I expected (that’s its own post).

And I had come across the term post-acute withdrawal syndrome (PAWS) by then, but it wasn’t really on my radar. I figured the taper would be hard, and then it would be over, maybe a rough couple of weeks at the end and then I’d be free.

That is not what happened. That’s the next post.