Guilty ! I am a perma-lurker. A good one, honestly. I have read an unholy amount of forums, comment threads, Reddit posts, and research papers, and in all that time I have posted approximately nothing. I’m shy. I don’t love talking to strangers. The idea of putting my voice out there, on the actual internet, where actual people might read it and enven worse, comment (!), makes me want to close my laptop while screaming into the void.

So why am I doing it? Because writing this is, no exaggeration, one of the biggest challenges I’ve set myself. It would be easier to stay quiet. But then again, I wake up in the middle of the night, thinking of blog posts I’d like to write from the endless notes I’ve taken and ideas I’d like to share and how this and that paper could really improve people’s lives if only doctors knew about it. So I think this needs to come out.

Here is why I want to share:

I don’t want to disappear. This is the big one. If you spend any time in benzo recovery spaces, you notice a pattern: the people who heal tend to vanish. They get their lives back, and who could blame them, they run as far from this nightmare as they possibly can. I understand it completely. But it means the forums fill up with people who are suffering, and little is know of the people who made it through in the long term. I don’t want to be one more person who gets better and disappears.

I want to fight misinformation. There is so much confusion around post-acute withdrawal syndrome (PAWS) and benzodiazepine-induced neurological dysfunction (BIND) and flumazenil, and some of it does real harm. Especially around flumazenil, where fear and horror stories get passed around with zero context, and people who might genuinely be helped never even consider it because all they’ve heard is “I heard that’s dangerous.” Untangling that confusion is a big part of what I want to do here. Not by telling anyone what to do, but by laying out what I actually learned, clearly, with sources, so people can think for themselves instead of drowning in suffering and the advide that “time heals all” (which is partly true, but maybe we can move things along a little bit?)

I don’t want the work to go to waste. I have done SO much research. Two years of reading studies, chasing down papers, cross-referencing, and running cautious experiments on myself. It lives in scattered notes, Notion pages, scraps of paper, and my own head. I am putting together a ressource page with all the work that has been done in the litterature regarding flumazenil and benzodiazepine withdrawal. Maybe it’s foolish of me but I’d like this blog, or at least the flumazenil part of the blog, to becore a bit of a ressources center, not only for people with PAWS but also for medical professionals and researchers. May if they can see the evidence gathered somewhere, they could learn and help people out.

Suffering. It breaks my heart that people are suffering endlessly with PAWS and BIND when a solution that could quench that suffering exists. Not for everyone in every circumsntace, obviously. And it’s obviously not a silver bullet but I would be an amazing tool. PAWS and BIND have real life consequences, we should never forget that. In a 2022 survey of over 1,200 people on benzodiazepine use and discontinuation (Finlayson and colleagues, the largest of its kind), 82.9% reported work problems, 86.3% had problems with social interactions and friendships, and 88.8% had problems with fun, recreation, and hobbies. Suicidal thoughts or attempted suicide was reported by 54.4%, and 46.8% said benzodiazepines caused lost employment. Read those last two again. More than half thinking about suicide, and nearly half losing their jobs. This is what “just wait it out” actually costs people.

Maybe I want to vent a little. I’m frustrated. Frustrated with a system that prescribed me something and never warned me. With how little most doctors seem to know about PAWS, some of them not even believing it’s real. With a pharmaceutical world where whether a treatment gets studied depends on whether someone can profit from it, not on whether it helps people. I’m angry, and I think the anger is legitimate.

This is me finally saying something. This is me trying to put something back in.

So here I am. Shy, a little terrified, hitting publish anyway.