So I gave Claude all of my writing in the hopes of getting a visual representation of what the hell happened to me. I know that sometimes I’m not super exact with the duration of events, but some stuff happened comittantly, some I don’t quite remember. I hope you can get a glace of my story here and please forgive me if I stray from the timeline at times.
Anxious kid, terrible sleeper
I was always a bit of an anxious kid and never slept super well. No trauma, did fine in school, it just was never ideal.
♥ life
Late twenties, back to school for a certificate while working full time, and then a close friend died. It was a bit too much. Someone told me I should talk to a doctor.
The lowest dose they make
I was innocent and I trusted the system. Nobody said a word about dependence, or short term use, or not stopping abruptly. Nobody suggested I see a mental health professional either. And honestly? At first it was marvelous. I slept. I felt like myself again, so why would I ever fret.
equivalent to about 10 mg diazepam
♥ life
Finished the certificate, kept working. Life felt like mine again, which is exactly why nothing seemed wrong.
Two quiet years
Same dose for about two years, and nothing seemed wrong. This is the boring part of the story, and honestly, that’s kind of the point.
The dose stops working
The sleep effect faded first, then the dose got raised four times in about a year and a half. That’s when the side effects really moved in, so slowly I didn’t even notice at first. All my tests came back normal and my prescriber was not concerned (lots of people take way more for years, he said).
equivalent to about 40 mg diazepam
what it felt like
♥ life
I was working remote by then and mostly left alone, so nobody really noticed my performance. I was there, going through the motions and existing, but it felt wrong.
“You can stop if you want to”
So I stopped, because he said I could and I hadn’t done my reading yet. The first couple of days were fine, and then everything hit at once. I genuinely thought I was dying.
then reinstated at 2 mg
what it felt like
♥ life
The ER figured it might be withdrawal and sent me home, right back on my old dose. I missed work. I got medically gaslit a bunch along the way.
The taper, plotted in Excel
That’s when I finally started reading for real. I found the Ashton Manual, asked to be switched to diazepam, and planned a slow, symptom guided taper, armed with a spreadsheet, a scale and a pipette (yes, I planned every single dose in advance, I’m that kind of person). It was hell anyway, but I kept to the schedule.
40
20
0
wk 0
wk 12
wk 24
wk 34
mg diazepam equivalent per day
reductions shrink from 5 mg to 0.5 mg as the dose falls
what it felt like
♥ life
I started CBT and got really serious about sleep. I took some time off work here and there, and my social and family life suffered, but I could see the light at the end of the tunnel.
Ready to celebrate
Last dose! I knew symptoms might linger another two to four weeks, and I was ready for it. I sincerely assumed things could only get better from here.
Then I got WORSE
Nobody warned me this was even possible. I was completely off the drug and deteriorating, with symptoms I’d never had in my life. But I was not about to accept years of suffering as a treatment plan. I tried supplements (some useless, some maybe a little help) and read everything ever published on flumazenil.
new symptoms, none of which I had before
♥ life
This is where I almost lost everything. Sick leave, the job hanging by a thread (saved mostly by being remote), family strained, social life mostly gone. Some months I was too discouraged to do anything, others I researched obsessively.
Flumazenil. It helped enormously. It was not a cure.
After two years of reading I finally went for the one option with actual research behind it. A low dose cream every six to eight hours, with weeks of planning and contingencies first (I read an astronaut book to prepare for this, no joke). I titrated up slowly, held for a week, then titrated back down. One morning I woke up feeling better than I had in years.
what changed
♥ life
A very regimented little life for three weeks: same bedtime every night, alarms for every dose, a printed schedule and a nice pen.
Not 100%, and that’s okay
The fog is gone, the zaps are mostly gone, and I sleep. Some things still come in waves, and that’s okay. There was no miracle cure, only tools: flumazenil was the biggest one, and a strict sleep schedule and therapy carried a lot of the rest.
♥ life
Work stable. Family okay. Social life returning. My body feels like mine again. And now, this blog.
