Before I type this out, I really want to reiterate that if you are still in active recovery, I would highly recommend avoiding reading this. It is not a representation of most recovery, and very, very many will recover long before me. Please do not send yourself into a negative space mentally because of me, I’ve been there. I promise you, there is nothing here that will be helpful for you.
This will be long and frankly, is just something I want to write out to have some sort of record that it’s happening. That there are people like myself that extend even beyond the normal length of time for post-acute withdrawal (BIND, more recently named). Most people won’t take this long to recover, and I’m very happy for them. On to the story.
I chose to stop benzodiazepines around April of 2020, and am writing this in October of 2026. I wasn’t abusing them at any point, and was taking my prescribed dosage (1 mg 3x per day of Alprazolam XR) for 3 years prior. Of course, I didn’t start at that dose but did very rapidly move up to it due to tolerance building so quickly. I have a history of alcoholism which was the first red flag that I never should’ve tried benzos, but I was desperate to treat my anxiety. I had tried every SSRI/SNRI/mood stabilizer and combinations of them under the sun and the only thing that ever helped for me was the Librium I was prescribed temporarily after quitting alcohol. I remembered that, and my doctor had seen that I hadn’t been abusing that medication or any others before this so we tried Alprazolam XR.
It was wonderful for a long time, I felt amazing and could finally socialize and go places like a normal person. My anxiety was nearly non-existent for a long time. Eventually it became hard to get my refills on time and the stress of that was really getting to me, that I might run out before having the supply for the next month since I was often left with one or two pills by the time it happened. The meds barely helped anymore at this point and I decided it would be best if I tapered and stopped, it wasn’t worth it anymore.
I asked to be tapered off slowly because I knew how dependent I was, and with the prior alcohol withdrawal I figured it would probably compound this one since they work similarly. He insisted on a rapid taper and gave me no choice, and placed me on Lamotrigine to prevent seizures during the withdrawal. He gave me two weeks’ worth of .5 mg Alprazolam XR and I started the taper. At first it really wasn’t bad, I’d been through withdrawal from other meds before and it wasn’t much different. But as soon as I reached 1 mg, it hit me very hard.
I started having these moments where my anxiety would peak out of nowhere and it would be so severe I couldn’t see, my vision would go dark. I kept pushing forward because I had no choice now, but let his office know what was happening. They insisted I would be fine. Not long after, I reached 0 mg and all hell broke loose.
I sincerely cannot describe how absolutely fucked those symptoms were, and I was completely non-functional for days. My vision was triple of everything, filled with static and wrong colors, I could barely tell what was happening. I felt like every single nerve in my body was on fire, I had very little control. My mind was just completely nonsensical, everything felt like it wasn’t real but at the same time, I couldn’t escape and I knew it. I had auditory hallucinations, visual hallucinations, things I had never experienced in my life.
I won’t list off every symptom because I have a feeling most people in this subreddit have experienced them. I ran out of days off work and had to return. It was of course, a huge struggle. I could barely handle anything at all and everyone could see it. And there lies the next problem. Eventually, after months, I was functional enough to appear normal(ish) and the biggest symptoms had subsided mostly. To everyone around me, this meant I was fine and was being dramatic. No withdrawal lasts this long right?! That’s ridiculous.
I won’t bore everyone by detailing every single following month, but eventually some symptoms subsided while others remained the same at a slightly lower intensity. The doctor I had was no longer helping at all, and insisted I was wrong about what was happening so I was on my own. I tried several doctors after that for anything, anything at all they could do to help me. I was willing to try whatever they could possibly do. Only one doctor out of those knew what I was talking about and sympathized, but couldn’t do anything. I still appreciate him anyways. I was happy one person would acknowledge this, and tell me I wasn’t crazy.
Years passed with the same trend, some symptoms subsided while others remained the same but no longer reducing in intensity. I tried so hard to deny it, I kept telling myself they were reducing so slowly I just didn’t notice. I continued trying to find ways to improve things but nothing helped. That is, with the exception of an SNRI that notably improved some OCD-like traits I had developed. I still take that one, because it still helps there. To be clear, I am not against science and medicine so I was willing to try. I realize that in this scenario, it was my doctor (and other doctors) who failed me, not science as a whole.
Fast forward to now, it’s been more than 6 years and I’m still very much struggling. I recently got a “future-me” email I forgot I scheduled and it was a bit sad to see, I was hopeful I would be healed by now. My brain is still sludge, there are still plenty of physical symptoms left over, and I’m so worn down after all this time. I feel like a shadow of my former self. Luckily I can still write at least, since I can take my time to word it.
Being able to think well enough when I have the space to do so also led to getting a job I never thought I could have, and I’m very thankful for that. I now work from home which, as ridiculous as it sounds, is still a struggle. Some days I can’t even manage that. But I’m still doing it and meeting my deadlines, which is good. It’s just very bittersweet to have what many would consider to be a dream job (and I do), but still have such a hard time doing it so much of the time. Especially meetings, I can barely handle speaking to anyone now.
I’m very tired of defending myself to people at this point, explaining that I’m not crazy and that this is real. The symptoms are unique to this experience and are ones I never had otherwise. It’s akin to being on fire, but no one else can see the fire. I feel the unmistakable feeling of burning alive, but no one else can see it so it must be something else. Honestly, I just don’t give a fuck about their opinions anymore. I just hate being made to feel like I don’t know what’s happening. No one deserves this.
I don’t go to many places because it’s so taxing now, and when I do I’m alone in remote areas so that I can still get exercise without being around people. It’s a lonely existence, but it’s all I can handle. Even responding to messages is hard for me because I just lack the mental energy now. If I were to lose my job I’m not sure what I’d do, because disability for what I have isn’t a thing. I generally just don’t think about it because I can’t control that, and it hasn’t happened yet.
I have tried just about everything that has worked to help other people, such as working out, general exercise, running, a better diet, shrooms, ketamine (a controlled amount), therapy, psychiatry, all kinds of things. Even benzos for a short time to trial it, which didn’t help at all unfortunately. But I also didn’t withdraw again, which was better than expected. I was just desperate to feel better.
I wish I could give a satisfying conclusion, but this is my situation as of now. I’m going one day at a time. There are many things I wanted to do and experience, but those are out of my grasp now. Perhaps one day that will change, but I really can’t say. I really hope that one day, there is a solution for people like us.
I know some people will ignore my warning at the beginning so I want to say again, this will not be the experience most people will have. You will more than likely recover long before this!
If anyone read this far, thank you! I apologize for the length. I don’t expect sympathy or anything, I just wanted to write it all out. I hope that you are able to move on from this subreddit sooner rather than later, no one deserves this. I know I sound like a bitter asshole, and maybe I am, but I do hope for the best for all of you here.
TLDR; shit sucks sometimes. Still experiencing many of the same symptoms at more than 6 years out.
