This is what benzo withdrawal was really like.
How it all began
The first time I took an Ativan, I was sitting in my dad’s gray CR-V and a storm was coming. I had a immense fear of tornados at the time, and I would panic at the slightest sign of rain. I thought the tornado would kill my mom and I would never say goodbye. I was living profound separation anxiety and I was losing my pre-teenage hood mind. I had a prescription for 10 tabs of .5 mg of Ativan to get me through the panic attacks I had been experiencing as my parents got divorced. I was in the 8th grade. These fears about losing my mom were definitely abnormal, but I was also coming from a household that was volatile and chaotic caused by my dad’s toxic aggression at the time, and I felt like if I didn’t have my mom, I probably wouldn’t be taken care of properly or understood. Given what I know now about the nervous system, I was having a really normal reaction to my reality.
I remember distinctively not wanting to take the pill, but with a nudge from my dad, that said, you should take it, it will make you feel better, I did.
I remember the feeling the Ativan brought me for the very first time still to this day. It didn’t necessarily make me high at this point. It just made me myself again.
That’s why I got hooked on it - it allowed me to be who I wanted to be. The Emily without anxiety.
My parents loved the Emily without anxiety. She was so much more lovable and I got so much more connection with them, and also with everyone else in my life when I wasn’t panicking so hard I was throwing up my breakfast.
Connection and being loved was important to me, just like it’s important to anyone. And because I saw that the way my anxiety came out, made people lose patience with me, I just wanted to stop feeling the way I did.
Ativan did that for me. It made me the me people loved again.
And so it became the thing I relied on for safety for the next 10 years.
By the time I got off Ativan, I was taking up to 3-4 mg a day. A striking difference from my initial prescription of .5 when needed with only access to ten pills. My doctor at this point, had let me have access to an unlimited amount of benzo, and in fact, he had encouraged it and told me I should be taking it and coupling it with a cocktail of anti-depressants as well as anti-psychotics so I could sleep and then function again in the morning. He would say how proud he was of me to be taking care of my mental health so well.
Let me make this really clear so you know my opinion, and if you don’t agree that’s cool, this post is probably not for you and you should stop reading.
I do not believe in pharmaceuticals as a way to treat anxiety or depression.
I did for a really long time and I judge absolutely no one who takes them. I just know too much scientifically proven information now that shows this method of healing is not only unsustainable, but also extremely dangerous. Still, I think you should actually take what I say here with a grain of salt and do your own complete research about usage AND withdrawal, especially if you’re currently taking medication. For some people, it may actually be totally needed and I respect that. I just don’t believe in it for my own self. Please don’t make any decisions based on a single blog post on the internet because that’s cray. And, in the same breath, I also think you should lean in and consider my story when it comes to your own pharma usage (especially and most notably benzo), since I wish I had read a post like this, before I got another year deep.
I deeply wish more than anything that I had only had that initial prescription and my journey with Ativan hadn’t continued past that acute panic disorder diagnosis when my parents were splitting up.
But that isn’t what happened.
What happened is that I became an involuntary addict for a little over 10 years.
This is someone who becomes addicted to a substance they are consuming without knowing its impacts or consequences. My two family doctors over the course of this decade became my drug dealers and I, a fantastic customer. I was enmeshed with a drug that is harder to withdraw from than heroin physically speaking, and I had absolutely no clue that I was mostly constantly living in a state of inter dose withdrawal. I thought the anxiety I experienced was my own anxiety disorder, and not the product of my body being physically incapable to regulate my nervous system as long as I took these drugs.
It’s tough to say if I truly had anxiety disorder when I began being medicated. What I did have was profound nervous system dysregulation. I believe I was occilating between high arousal/ low dorsal shut down, because my parents were in a nasty and abusive divorce situation, and I was victim of developmental trauma from having been living in their home(s). I felt powerless, confused, scared, responsible for things I wasn’t really responsible for, and vulnerable to attack or something going terribly wrong yet again almost every second of every day, and that made me have panic attacks because my nervous system was dysregulated. Easy explanation right? But instead of getting proper nervous system care and attunement from available and capable care givers, I was medicated and sent to ineffective talk therapy that included no somatic release, and that I believe, is what sent me into the experience of heavy duty anxiety disorder.
My entire teenagehood was made up of family drama and quite literally trauma. I was dealing with things such as violence, narcissism, parentification, abandonment, rejection, reconstructed family systems, etc. And unfortunately, when I was 18, I was in a relationship that turned abusive also, and my partner drank too much one night and raped me. It was terrible. The conditions I lived were livable because I had access to shelter, food and clothing at all times, but it doesn’t mean I was safe and that I was being set up for life in the right way. I hung out with the wrong crowd who didn’t appreciate me as a human being, and I associated myself to dangerous situations because it was thrilling and I was depressed. I share this to give you the context of what I was living throughout the first 5 years of my benzo usage. I was a prime candidate to be hooked on this stuff. Plus, I had that whole thing going on - if I’m anxious, people hate me and don’t know how to handle me, therefore I’ll be alone and with no connection ever. And I don’t want to be hated, nor alone and with no connection ever. So, Ativan helped me make sure that would never happen.
Why I withdrew
Sometime in the spring of 2017, a couple years into my twenties, a friend of mine committed suicide suddenly. It scared the living shit out of me and it shocked me to my core, so one of the things I did in an attempt to take care of myself was going to the doctor’s to ask for help to get my medication dosage just right as I was really affected by her death mentally speaking.
Sometime during all my medication adjustments, my prescription for brand name Ativan got switched out for generic Ativan (lorazepam) without my noticing. The thing is that I’m super allergic to dairy, and there was dairy in the generic I was given. Not knowing the reason at the time, I began to feel really really sick constantly ‘cause I was reacting to the dairy on a constant but low key level. This created more anxiety for me, which made me intake more generic Ativan.
On May 21st 2017, I cold turkeyed off Ativan after I landed in the E.R, because I hadn’t slept in 3 days. Like, at all.
It’s important to note that during this entire spring season, with the adjustment of my med dosage, I was having major problems with them - meaning they were making me suicidal and I was having more and more chronic issues that were plaguing me.
I remember sharing with my partner at the time that I thought my meds were making me want to kill myself. I had never felt this cloud over me before. I had no reason to kill myself - other than having a hx of trauma which I was fully addressing constantly in my growth work and in my professional studies since I had graduated high school. In the present day, back in 2017, overall, I was a well respected mental health advocate, I was an author, I had just made six-figures in my thriving business and I knew people genuinely loved me. I was in effective ongoing therapy. I did S.E and trained in it. Hell, I was a LIFE COACH for god sake. Why the hell did I want to stop existing so badly? I was freaking the fuck out. I truly didn’t feel like myself, but because I veneered medication as a cure, I didn’t think to question that I may be experiencing what so many of us experience when we’ve been drugged up with pharmaceuticals. Side effects that are then blamed as mental illness. It seemed like no one talked about this stuff a couple years back, even in the cutting edge world of nervous system science in S.E courses. Everyone was scared of being a liability or touching on something out of their scope of practice, so no one would mention how fucked up benzos were to the system - even if they knew it. When I told my own S.E practitioner at the time, he didn’t even tell me that this could be what was causing my block to feeling better. No matter where I went, I was being told that I felt so messed up because I was raped, or because my family was in distress all these years. And it just never felt like the WHOLE story to me. Sure, it felt like large parts of it, and I could work with those parts. But something was still off.
Here’s the thing though: I had been trained and taught over and over again that taking medication for your anxiety disorder was a sign of profound self-care. So, I get it. I would of hated to read this back then. I would of felt that the writer (me in this case) was completely in the wrong, didn’t actually experience mental illness, and that she was shaming people for taking meds to take care of themselves. I didn’t know any better because no one, and I legit mean no one, warned me that what I was putting in my body could be physically impossible to withdraw from. Not only did they not tell me, I never saw any real ass science backing anything up. And I never thought to ask or look myself, because I trusted my doctors, I trusted my therapist and my practitioners, and I trusted my parents.
I hadn’t heard of pub med yet…
I would take an Ativan before going to go do a speech on how to take care of yourself when you had anxiety in front of 500 high school kids. On the outside, I had the life everyone wanted. I made gold out of the cards life handed me, and I was living my dreams. I was being paid 300-500 dollars an hour to talk about MY thoughts. Yet, I lived my life mostly high and I didn’t think there was ANYTHING wrong with that. And whenever I did bring up concerns, the people around me, all on my ‘trusted’ medical team, would assure me I was doing everything right. They’d tell me I’d relapse in my anxiety disorder if I stopped my dosages. Yet, I was anxious CONSTANTLY. Well any time I wasn’t on Ativan. But duh… I was living in constant inter dose thinking that was just me… the girl with anxiety disorder.
I’ll be honest: none of it made sense in my body and I felt guilty all the time for taking the pills. But I was also taught that I shouldn’t trust my body. It was confused. It had anxiety disorder. All I knew is that I didn’t feel right and it felt like it was not me who was causing it, but I just didn’t have words or education on it yet. So I did what I could to keep steering my ship - which is what we all do. The worst part about all of this, was that I was INSIDE the mental health world and space, and actually educated on so many things, but no one talked about adverse effects of medication, so there was no mainstream way to get to this.
Before I landed in the E.R, I remember googling, “what Robin William had in his body when he died.” Sure enough, they found rumeron (which I was on) and seroquel (which I had been on prior). I don’t know why I decided to google this, I just felt like I was a happy bubbly person who loved to have fun who wanted to die and it made no sense.
When the doctor at the hospital, his name was Gabriel, told me that I should probably stop taking Ativan long-term as much as I was, and that I had to work a plan out with my family doctor to titrate because what I was describing was severe inter dose withdrawal - the reaction your body has when a dose of benzo leaves your body - I immediately googled, “Inter dose withdrawal Benzo” and EVERYTHING that had been wrong with how I felt that I couldn’t figure out suddenly made all the sense in the world.
This is essentially what benzo does for you in simple speak (please don’t come at me with hate here, I am over simplifying, which is better than anything I’ve ever seen, because barely anyone even knows what benzos do): When you take a benzo, it creates more gaba in your brain so that your nervous system can be calmed. But when it is done affecting your neurotransmitters, your body can’t make the gaba on its own anymore, which means that it can’t calm itself down naturally. Overtime, with the usage of benzo, your body can’t make any gaba at all. Which means you are incapable of physically calming yourself down with the proper chemicals naturally. This makes you dependent on the drug to escape anxiety. It is not a placebo.
I made the executive decision that I was going to cold turkey off of benzo that very day. The doctor suggested it lightly, which he shouldn’t have, because it was dangerous. But I’m glad he did anyway. And to make sure he wasn’t liable, he told me to take it up with my family doctor. He cut my prescription to the generic Ativan that was giving me a constant allergic reaction, upped my sleeping pill prescription and gave me more rumeron/ seroquel combo hoping it would help me sleep in place of the benzo. He gave me a few benzos to use up until I saw my family doctor if I needed too. I’m really thankful to that doctor because he changed my life by giving me the info no other health practitioner had ever given me, which prompted me to do research and decide right away what should have been my call so long ago.
I wish I had a more lengthly profound process for choosing to quit benzo, so I could help you in your quest because mine was so complex and delicate, but this is truly how it happened. Rash and sudden with no looking back. It was one of the only decisions in my entire life that I’ve been 100 % sure about (I’m an emotional authority in human design so this is rare) and that nothing and no one was going to stop me from completing this - and more so, surviving this.
I knew more than anything that these were the things that were making me sick. I had spent years getting a diagnosis after diagnosis of chronic illness and this whole time, THIS WAS THE PROBLEM FOR ME. I just knew it deep down in my bones. I can’t really describe it - I just knew. It may be the only thing I ever did know for sure.
So, this is what benzo withdrawal was like.
To sum up benzo withdrawal is specifically difficult. But the way that I can try is by saying that it felt like the whole world was fake, and that I wasn’t sure if was dreaming or not. I felt so surreal and everything felt so surreal that I didn’t know what I could trust as real or not. I was depersonalized/ dissociated in such an intense way that I was constantly scared that I would fall into an intense psychosis and never be back to normal ever again.
The first week was rough. I barely remember it. I spent most of the first 3 months in bed in general, or laying down, or pacing back in forth in the death grips of panic when the adrenaline would get too heavy to keep idle. I would also take baths and would use stress away by young living which now makes me feel fucked up.
Around day 5 or day 6, I nearly took a pill again.
I remember my mom and boyfriend brought me to a center where people were dealing with PTSD/ drug addiction problems and telling them, “I’m straight up not mentally ill, these pills have been fucking me up for years and then everyone’s been telling me I’m mentally ill WHEN I’M NOT. Please read benzobuddies.org and see what I’m talking about LADY.” Yeah, in retrospect, I can understand that sounded pretty unstable, but it was also the truth. For me anyway.
All I remember was how afraid of everything I was for the first few weeks - I had no clue if I would survive or not. I want you to take that in reader, I legit didn’t know I was going to survive this. Many times, I thought I was going to die. Either from a natural cause like dehydration, a seizure, or I often thought my heart was going to stop randomly. I feared that or I feared dying from suicide eventually if my symptoms didn’t ease up and I went completely broke and couldn’t feed me or my partner. All I wanted for months was to make it to the end of 2017, but every day, and every night, I wasn’t sure I would.
I would have to get through the day literally going 10 minutes at a time. Sometimes, I had to do minute by minute. There is nothing worst than being in so much pain, you don’t know if you’ll survive the next 10 minutes. Many people won’t get the true feeling of that.
I lost about 30-40 pounds. I’m about 5”9 and by the time I was 3 or 4 months into withdrawal and I weighed myself, I was about 102 pounds. Now I’m back to 135-140 - my normal and healthy weight. I was as a white as a ghost, my skin greenish and my eyes overcast with a glassy look to them. I visibly looked sick. You could see my frail figure and my collar bone popping out. My nausea was so intense that any smell or sound or wrong lighting would trigger me into a dry heaving fit.
My mom, who I was renting an apartment with at the time in Montreal, only lasted about 2 weeks of seeing me in withdrawal, until she had a breakdown herself and gave me an ultimatum: either you take the pills again or I stop helping you. I get that she had her own health issues going on, and her own history of trauma she hadn’t addressed at that point, and now I understand why she reacted they way that she did, but at the time, I was in disbelief that she was opting out at the time that I needed her the most in my entire life.
As hard as it was, I chose the second option in her ultimatum. She left our shared apartment in the middle of the night and the journey became my own and my ex-boyfriends alone. I took a sleeping pill to try and sleep for a hot sec. It was the last pharmaceutical I would ever take.
Everything was fucked up. And I legit mean everything. I have no pictures or documentation from this time because seeing visual cues of it is something I decided I didn’t want. But here’s what it was really like per my memory:
I had a seizure the first night after the hospital. I did not seize again, so I assumed (which may have been very dangerous, but it turned out okay) I’d be clear after 72 hours if I didn’t experience it again. I found a benzo aware doctor in San Fran and scored an emergency call with her to discuss. She told me that if I was 72 hours clear of my last dose and I didn’t have a catastrophic seizure at that point, I would most likely be okay. I should expect tremors though for a long time. She told me that if I could physically manage not taking another dose, that I was in the clear in terms of truly dangerous effects (the seizures) given I was past the 72 hours mark, so I should try to finish my cold turkey, if possible.
She was right, the tremors stayed for months but I did not seize again. Leg tremors were especially crazy. My legs would jolt without warning and in all sorts of funny ways. Full body shakes. The whole bit. It was like I was outside in the middle of winter with no jacket on permanently. Except it was spring and summer.
I couldn’t use my muscles properly. Especially in the beginning, I would try to stand up and would collapse often. I couldn’t hold a cup up without spilling it everywhere. One time, about two or three months into withdrawal, as I was gaining strength back, I went for a walk by myself (which was a dumb idea looking back), and I fell on the side of the road and couldn’t get up for a while. I just sat there and picked on the grass and tiny flowers until I could feel my legs solid again. Then I slowly half-walked and half-crawled back home. Like literally, sometimes on crawling on the ground. Like an animal.
I would faint a little bit constantly. Like, straight up lose consciousness as things went black and all I saw was black throbbing stars. I had eye floaters remain a long time afterward.
I would puke, have the shits and literally dry heave for hours a day. My digestion was completely wrecked.
My skin broke out in acne like it had never before, and I began a journey with a body wide yeast/ vitiligo rash.
My vision was so distorted that the trees would move, and the pavement would cave into itself when I stood and looked at it. My optic nerves were so inflamed.
I had the symptoms of fibromyalgia and migraines living with me almost constantly. I had tachycardia at all seconds of every day. When I would fall asleep, I would get woken up shortly after by my racing heart. The only thing that gave me temporary relief for 20 minutes was a detox acupuncture treatment I was being administered every few days.
Some days, all I could do to pass the time and stand to be in my body was pace back and forth in the living room. I couldn’t stay still without getting constant bursts of adrenaline. I had agitation that was beyond what I could of ever imagined possible to feel.
I lived in a panic attack. I don’t know a better way to explain it. That’s just what it was. Think of the worst panic attack of your life, then think about how it could of been worst in any way possible, and that’s how I felt ALL THE TIME. Like it was ungodly.
I was sleeping about 10 minutes a day at first for the first month. Then it increased to half hour, hour, hour and a half, 2 hours. Etc. I didn’t sleep more than a cat nap’s length until about month 3 and a half going into 4. That only can make a person go crazy.
My sensory sensitivity was so bad that I couldn’t have anyone even breathe near me without being startled. Everything would wake me up. Sometimes, my boyfriend would drive me in the car so I could get 10-15 minutes of sleep like a small child.
I was forgetting everything. I couldn’t even remember which mail box was mine.
I obviously couldn’t do all basic tasks, such as cook or clean or grocery shop and I was fully physically dependent on my ex.
I was also mean and moody and I would get aggressive if I was prompted in the wrong way. I once broke several vases and plant pots and threw shit all over the apartment while calling my partner names because I was so pissed he wasn’t doing what I wanted him to do. When I settled down, and I saw the broken pots and the dirt all over the floor, I had felt like I was possessed. Who had done this? I knew it was me, but it felt like I had no control over what I was doing - that I had to do it to be satisfied or feel relief. It was terrifying.
The depersonalization and dissociation of the experience may have been the thing I was least efficient at coping with. I believed I was in TVs shows and I couldn’t tell the difference between my inner world and my outer world. It’s like the worst drug trip you could ever be on.
Other mental symptoms included suicidal depression and extreme paranoia (and I legit mean extreme).
My mom during this time gave away our 1 yr old puppy because she felt both she and I were unfit to care for him. She was right. But still, I don’t know if I’ll ever feel pain that intense in losing something ever again. I genuinely had a plan to end my life because my pain was so insane. And yet, I didn’t really want to die. I just wanted the pain to stop.
My body felt like it was one of those plastic medical model bodies. To observe and study, but it wasn’t real. I would be naked constantly, but my sex drive went away completely. I would be helped into the bath and out of the bath so I wouldn’t fall or collapse.
I didn’t feel like a woman anymore. Nor did I feel like a human being, or even myself.
Yet, I persevered. I knew everything I was experiencing was common and normal given benzo withdrawal now that I had the proper information. But I had no idea when it would stop. That’s the worst part of withdrawal - you don’t know when the finish line is. Everyone has a different experience. For me, things got better around month 5, which ended up being in November of 2017. I got back to work full time at this point, could eat again, moved into a new house and started to sleep through the night. Month 5 to a year was still a lot of healing, but I was functional again.
Here were the other implications:
I had to take about 4 and a half months off of work. Given my business model at the time, I lost about 45 k of income.
I had to financially support both myself and my partner at the time. He had no income or savings as he was taking care of us, so I had to pay for two grown adults to survive while I wasn’t working with absolutely no disability help. My dad did chip in a couple hundred bucks a month to help us with groceries, but I was responsible for absolutely everything else. From where I’m standing now, that was a completely crazy amount of pressure to put on me and he could of helped me more. I wish he had.
During my acute withdrawal phase (the first 5 months), I spent about 50,000 on expenses alone.
Sure, I could of titrated slowly over the course of 2 or 3 years, but I didn’t want to do that. I felt like these pills had already stolen 10 + years of my life. I wasn’t going to let them steal the rest of my twenties. Plus, I didn’t want their nasty ass chemicals inside of me every day anymore. Not a day longer was my motto.
I wish I had the perfect 5 steps to withdrawing off of benzo, and I wish I could tell you what I did to make it happen for myself. All it comes down to I think is that I’m one brave mother fucker, and when I have a goal, I get there - no matter what.
So, I am really glad that I made this decision for myself.
Benzo withdrawal was traumatic, yes. I am lucky I survived it. I did it in a risky way. It’s likely that no doctor will recommend it. I don’t even suggest it from human being to other human being because it was literally the worst thing I’ve ever lived. Pretty sure one of the worst bodily things anyone could ever live. But I am free now. It was the single best decision of my life to continue on and not give in to every impulse that made me reach and beg for a pill.
I feel for the first time in my life, so safe being who I am and being in the world. I get to know myself, truly, sober, every day. A luxury I lost as soon as I turned 13.
On this bell let’s talk day, I urge you to get educated about the pills you put in your body - especially again, if it’s benzo. There are regulations that state that benzo should not be taken for more than 2 weeks at a time, yet it’s being prescribed off label like crazy and then we get addicted without meaning to. No one deserves to live what I lived. And certainly, not in the name of self-care.
There are other ways to get help when you have been experiencing anxiety, especially after trauma. I wish I had known about them earlier.