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There and back again: multiple drugs, multiple tapers, multiple years to success


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November 8th 2022 marked seven years since my final taper. I view it as a sign of how complete my recovery is that my benzofree anniversary was not the most significant thing happening that day! Today is also not anything particularly special, just a quiet moment when I could reflect on how much has changed. If you were only on short term, or only tapered once, please dont let my story scare you. I want it to be supportive for people who need it. It is very long so I will break it into sections. TLDR: just keep swimming- if you stay off benzos and be kind to yourself there's nothing else you have to do.

 

I finished writing the following story somewhere around 4 years off benzos. It probably took another 1-2 years to really have all the waves end. And then, my daughter was diagnosed with type one diabetes. It has been incredibly challenging, and unlike benzo withdrawal it will never go away. However, I am grateful to have the strength I need to take care of her. Insomnia was my biggest challenge and now when I am up in the night treating a low blood sugar I know that I can do it. The vast majority of the time I go right back to sleep (read that part again!), and if worries keep me awake then no big deal- I know I can cope.

 

“Many prescribers don’t realize that benzodiazepines can be addictive and when taken daily can worsen anxiety, contribute to persistent insomnia, and cause death.”

Our Other Prescription Drug Problem. Anna Lembke MD, Jennifer Papac MD, and Keith Humphreys PhD. New England Journal of Medicine 2018; 378:693-695.

 

A nurse once told me “there are two things we have no lab diagnostics for: anxiety and pain. For these things we just have to listen to the patient.” I have a story to tell you and I hope that you will listen. I hope you will listen because I know you want to help. I want to tell this story because I have never been more proud of an accomplishment that so few can understand. At the same time, I know it is not an easy story to accept. I know this because before parts of it happened to me I didn’t believe it was possible. To be clear, this is not a case study. This is my story as I remember it. If you are still with me, let’s begin at the beginning.

 

Part 1: Stumbling

I was always a "fall asleep as my head hits the pillow" kind of person so you can imagine that when insomnia overtook me four months after the birth of my first child I had no coping mechanisms in place whatsoever. Going back to work left me wedged between my desire to exclusively breastfeed and my habit of exceeding expectations at work (and everywhere else). My mind couldn’t solve the problem and my body responded by staying awake to keep watch. Years later I discovered the link between anemia and insomnia. I had lost a lot of blood during the birth, exacerbated by a partially retained placenta that wasn’t identified until two months postpartum. Iron supplements would have been a useful first step, along with some guidance about realistic goal setting, but at the time I did what you are supposed to do and called my obstetrician. She wrote me a prescription for zoloft with instructions to “take 25 mg the first night and 50 mg from then on and you will be just fine in a week”. My recollection is that this prescription and advice were delivered over the phone. I say that is my recollection because I want to believe it isn’t true. I want to believe that my life didn’t slip sideways with a single phone call. Three days later things were unimaginably worse. Now the insomnia was joined by wanting to climb out of my skin and feeling like I was constantly screaming inside. I called my OB and asked her if SSRIs can increase anxiety and she said she had never heard of that. This was before we all relied on Dr. Google so I was convinced that something was very, very wrong with me.

 

My ability to prioritize my own needs hadn’t magically improved with this experience. I went to see the first psychiatrist I could find— someone that a friend had seen as a teenager. He suggested increasing the zoloft more slowly and when that didn’t help he told me to stop it altogether. I spent the whole next night vomiting into the toilet, interspersed with nursing sessions when my baby woke up. After much searching and confusion I found a psychiatrist specializing in postpartum mothers who started lexapro, with similar results. “Would you like something older, like a benzo?” she asked. Would I like? How could I possibly answer that question? I didn’t know that in 1979, the Senate Subcommittee on Health and Scientific Research held a hearing on benzodiazepine safety. I didn’t know that in that same year Barbara Gordon published her story of a high achieving life sideswiped by valium. I didn’t know that in 1988 the Committee on Safety of Medicines in the UK mandated that benzodiazepines be prescribed for no longer than 4 weeks. I didn’t know that the Ashton Manual was first published in 1999 to help people who were physically dependent after taking only as prescribed. What I wanted was my life back. I was prescribed 1 mg klonopin daily and 0.5 mg ativan as needed (which ended up being very rarely). Looking back now, this seems a shockingly large dose of medication to give someone with no history of psychiatric problems. In answer to my questions about possible dependency, the psychiatrist said “I am as good at getting people off these drugs as I am at getting them on.” I asked no more questions and was quickly relieved to be sleeping again and to have the noises and burning/crawling feelings disappear. Thus the slide down the rabbit hole began.

 

After a year of religiously going to therapy and taking my meds, I had started to understand that it wasn’t possible to be perfect and that it was ok to ask for help. Thus empowered, I decided I didn’t need the klonopin anymore and I was ready to stop. The psychiatrist instructed me to "taper" by 0.25 mg every week. Abracadabra. No more klonopin. No problem. A couple of weeks later sleep got worse and worse even though I couldn’t identify anything that I felt anxious about. The psychiatrist said obviously I wasn’t ready to stop taking klonopin and had to go back on 1 mg because I still had anxiety. About another year went by, in which I successfully tapered off the lexapro. At this point I was really ready to stop klonopin. How can something that was supposedly triggered by short term hormonal fluctuations take this long to "fix"? I was highly motivated to get off the klonopin before having another child. When attempts to lower the dose failed my psychiatrist suggested that we taper during the first trimester when “I would be sleepy anyway”. Around that time we started the "taper" plan again until at 0.5 mg I was a screaming, boiling, sobbing wreck. She responded that I needed more klonopin and should go to 2 mg this time. I left the office and never went back.

 

I found a therapist who specialized in EMDR and worked with her and a psychiatrist she recommended to do a slower taper, reducing by 0.125 mg klonopin every two weeks. It was agonizingly difficult. I white-knuckled it all the way down and was off once again. I was blessed to have my wonderful second baby with a second unmedicated natural birth. Many women who experience postpartum mood problems are able to have another child without problems but many are not. My medical team was on high alert for warning signs and I also did not want to lose the early months with my baby as I had the first time. The advice I got at the time was that ativan is a much safer medication and I can take it "every now and then" for sleep and not worry about getting stuck like I was on klonopin.  Maybe that is true for some people but not for me.

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Part 2: Falling

I began taking ativan p.r.n. shortly after my second child was born. In hindsight, it seems clear that I was experiencing withdrawal from the klonopin taper that I had finished only a month before. Is it possible to distinguish rebound anxiety from postpartum anxiety? After all this time I feel that there is a clear difference. In the same way that pitocin induced labors throw women into continuous unbearable contractions while normal labor comes with breaks and can be breathed through, the rebound anxiety was a non-stop howling that I couldn’t turn off. Natural anxiety ebbs and flows. It didn’t take long for me to ramp up from 0.5 to 2 mg of ativan and then even that wasnt working. Lexapro was added again, only this time it took much longer to provide relief.

 

I still had an unshakeable conviction that the medication was a short term solution. At one year postpartum, under my doctor’s supervision, I stopped the ativan and lexapro one after the other. This led to a spiral where I diligently exercised, took vitamins and did acupuncture while the world fell apart around my ears. I recognized the mess I was in, having been there before, but at that point I no longer had insurance that allowed me to see my previous team. I visited my general practitioner and asked her for klonopin. I thought I could taper like before and get myself out of this mess, never take another benzo and be done with it. I thought I could do it alone. Well, in case you are seeing a pattern- every time I tried to stop it got harder. In January 2013, I was diligently tapering away at 0.125 mg every 2 weeks and was doing fine until I hit 0.375 mg klonopin. That's when I realized I couldn’t do it alone, something was different this time. I returned to 1 mg klonopin and started researching.

 

Until this point I had listened to the doctors who told me to stay off the internet, but I was looking for an alternative option to lifelong medication. I found the Ashton Manual and signed on to an online support forum (www.benzobuddies.org). These new resources were a revelation. None of this was my fault! Weaning off of psychiatric medications, particularly benzodiazepines, was well known to be serious business! Even people who had taken benzos for physical conditions such as muscle tics experienced intense anxiety and insomnia (among other things) when withdrawing. More importantly, thousands of those people were now benzo free and healthy. Initially I persisted in the belief that if I could only do the taper the "right" way it would be pain free. I know now that isn’t true. I tried to cut 0.06 mg klonopin about every two weeks, experience the pain and yet persevere, but it was impossible. I couldn’t sleep and I couldn’t be present for my family.

 

After much reading and help from the online forum, I decided to follow the advice of the Ashton Manual and cross over to valium. My doctor said that is only for hard core addicts and my dose (0.625 mg klonopin) was too low to warrant that. I persevered and found a psychiatrist who would write a prescription for valium even though she didn’t believe the rationale that the vast majority of my symptoms were a result of the benzodiazepines themselves. Crossing over to valium brought me almost immediate relief. I went from 0.625 mg klonopin to 8 mg valium, in three stages. I was aiming for the lowest dose that would cover symptoms to avoid a longer taper and 8 mg seemed to work just fine, although it was less than the 12.5 mg the Ashton manual recommended. I could sleep and I could taper. It was still challenging to begin with, but it was the difference between “I am dying” and “I don’t feel well today”.

 

From spring to fall 2013 I diligently tapered off 8 mg valium in increments of 0.5 mg every week or two. It wasn’t that difficult. Who knew that could be a liability? When I got down to 2 mg it became very difficult very quickly. With almost no experience at coping with withdrawal symptoms since I had previously gone back up in dose when the symptoms came, I became very afraid. At this point I was still trying to get through with minimal impact on anyone around me. With two young children and a career being incapacitated was unacceptable. The psychiatrist prescribing the valium recommended remeron and it seemed like a perfect solution. It left me hungover, hungry and angry but at least I could sleep and continue getting off valium. I zipped off the last couple of mg under cover of remeron, but soon that wasn’t enough.

 

Insomnia came back with a vengeance. I stopped eating. Anxiety skyrocketed. In that muddled state I also rapidly went off the remeron because why take it if it couldn’t fix everything as advertised? Mid-December of 2013 I was six weeks off valium but barely able to stand, let alone function. I was using the end of year slow down to hide from work, but I couldn’t hide from the fact that I couldn’t care for my children. I was absolutely terrified and the only support I had was online. The worse I felt, the less I looked for support because I thought I was a failure.

 

Eventually I drove myself to the psychiatrist’s office and said “please help me.” Now help means many things. A physician who has seen me as a happy and healthy person and supervised a valium taper over the better part of a year could say “You are experiencing valium withdrawal. You need to get help at home and take time off work until you are better.” Instead she said “we tried stopping the medication, but some people just need to be on this for the rest of their lives. If you continue like this you will get in a car accident and kill your children because you are sleep deprived.” This experience, combined with the knowledge that the Ashton Manual says withdrawal symptoms even after a taper typically take 6-18 months to resolve left me feeling hopeless. That night at bedtime I took 2 mg valium but I needed 10 mg to get some sleep. The reinstatement never really fully worked- the next few months were the bleakest most horrible time of my life. I was prescribed lexapro (again), remeron (again), trazodone (only took 2-3 times because it didn’t help with sleep but made me feel like I was falling), gabapentin (ditto and couldn’t feel my hands)… even circled back to klonopin for a couple of weeks.

 

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Part 3: Crashing

The only good thing about this time was that I couldn’t pretend I was healthy anymore. I gave up trying to maintain my career and switched to contract work that I could do from home when I was able. My parents came to stay with us, I completely let my guard down and let anyone who wanted to help me, help me. I also fully rededicated myself to psychiatry for several months. I accepted that I had a worsening anxiety disorder and would only be able to feel well with medication. I experienced bouts of anxiety and sleeplessness that were dealt with by nudging the lexapro higher, then the valium. This process resulted in akathisia so severe I was unable to sit still long enough to eat anything, with my toes and fingers flexing constantly and involuntarily. Somehow despite the symptoms I held on to enough inner strength that when the psychiatrist recommended seroquel, I said no.

 

No. I am not broken. I know who I am. I came back to the online forum and found a doctor recommended there. Slowly, very slowly, I got back on track. I tapered the lexapro. That was awful, but once I recovered I had even more evidence that it was the medications that were making me sick. When I began the last valium taper I was at a dose of 14 mg. I was so ashamed and full of despair but once I had made the decision that I wanted to stay alive, there was no other way than to taper once more. I cut 0.5 mg every week to 2 weeks from 14 down to 5.5 mg (with some three week holds when needed). Then I switched to 0.25 mg cuts every two weeks.

 

Looking back at my notes from the year and a half of tapering valium the second time I remember the advice my mother gave me once I let her know what was happening. “Pretend you are a mountain climber trying to get down a gigantic icy rock wall. Sometimes you will descend smoothly and land safely. Sometimes you will just need to hold on and close your eyes while the wind howls around you and you shelter in place. But you can always look back and see how far you have come. The way down looks terrifying, but you will take it as you did the first part of the journey, one step at a time.”

 

There were awful months. There were good weeks. There were the weeks I had to take my daughter to summer camp and the cheerful music that they played on arrival made me shiver inside and grit my teeth until I could run back to the car and cry before driving slowly home gripping the steering wheel to spend the day huddled on the couch. There were the nights I had to decide over and over that it was better to lie awake and still next to my husband than to walk out of the house and onto the train tracks. The day I came home and met the landlady in the driveway after a week of no sleep and she made me chamomile tea and put me to bed and I actually slept for several hours. The sheer terror of going to the grocery store. Fits and starts. Leaps and crashes. Getting down off the mountain.

 

The long awaited moment of freedom finally arrived. November 8th, 2015 will always be a second birthday for me. I was absolutely certain I would be one of the people who say they felt much better off the medication than on. I had tapered carefully. I had completely abstained from alcohol and caffeine. I exercised. I meditated. I had a positive attitude. I couldn’t imagine, and if I had I know it wouldn’t have helped, that I was launching into yet another abyss. The first week off was lovely, the second week off I encountered withdrawal symptoms much like what I had experienced during tapering. After the first month, withdrawal struck in full force.

 

Sleep became a dreaded nightly task. I would go to bed relaxed and exhausted yet all that happened when I closed my eyes was an amplification of the electrified tingling sensation and an unavoidable awareness of a bright light on in my head that wouldn’t let me find peace. Even during the day the sensations of pain, crawling/burning skin and brain shivering would be overwhelming. Meditation became an extreme sport: I see you pain, I see you fear. I see you and I accept you and I choose not to define myself by you.

 

Sitting with the agony and not running away was about as easy as watching my arm catch fire while cooking and continuing to make dinner anyway. It was often both a physical and a mental exercise since I had no choice but to get out of bed after a night of electric sleep and get the kids ready for school despite the storms going on in my brain. All of this was exacerbated by the looping, crushing thoughts of “What if it isn’t withdrawal? What if I am doing this to myself?” The only defense against these thoughts was to know that there wasn’t anything different to do either way. Just one more day. And then another one after that.

 

The first four months of benzo freedom were like going through a car wash without a car. Whap! Slam! Come up for air and then the rolling scrubber comes down to flay the skin from your back. Nothing was predictable and nothing was safe. A moment of tranquility could be replaced in the next breath with torment. Pain and fear careened across my body and mind without visible cause and without warning. Ever so slowly, and certainly not linearly, that agony was replaced by a phase I think of as drudgery. Days on end of moving slowly through a quagmire of pain and exhaustion, but without the intense chemical anxiety that came before. Then at ten months an inexorable slide into darkness began. The skin on my arms and legs felt like it was burning, my bones shook so that I began to crave stillness almost more than sleep. I invested in a weighted blanket, but while it felt good it didn’t stop the vibrating sensation. My right ear shrieked at me constantly. A bad night switched from 3 to 4 hours of sleep to 3 non-consecutive hours, with horrific one or two hour nights scattered in at random. I got through it by telling myself that surely, surely, this was the last wave before it got better forever.

 

It wasn’t. The long awaited twelve month anniversary came and the agony continued, along with the deep sadness of the one year milestone weighing me down. It was around this time that I stopped asking for help and reassurance. I was sick of myself and my story, how could anyone else possibly want to spend time in this wasteland? The only thing I could find to hold on to was the knowledge that my children would be worse off if I wasn’t here. On one lonely walk through my neighborhood I wrestled with the constant question “what am I going to DO?” I picked up a bright red maple leaf from the ground and the answer came to me “live anyway”. It was certainly true that I felt worse when I wanted life to be different from what was, but I could forgive myself for that wanting.

 

At thirteen months off I was still experiencing all that came before, plus the exhaustion of surviving those previous months. To make matters worse the 3 to 5 am deluge of nausea and dizziness intensified, leaving me clinging to the bed trying to focus my thinking on “I am breathing”. I desperately wanted to know how much longer because I thought it would be bearable if I had a goal. When that thought came I had to remind myself of the words of a beautiful success story I read online: “there is no knowing, there is only being and doing”.

 

A nadir is only recognizable in hindsight. Thirteen months was one. Nineteen months was another. Nevertheless, I persisted.

 

If benzo withdrawal were a movie, the heroine would meet the beast in battle and fight valiantly until he dropped, broken, to her feet. The music would swell, the audience would relax, only to have a clawed hand shoot out to grab her ankle. They would lock arms once more, ending with the beast stumbling backwards over the cliff never to be seen or heard from again. This is not that story. This is Hercules fighting the Minotaur, only Hercules is Sisyphus. One day a finger in an eye socket, one day a heel to the solar plexus, one day a chance to rest.

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Part 4: Rising

“This story doesn’t have an ending because it isn’t over yet, but I believe it will have an end. One thing I know is true is that I don’t have an anxiety disorder. Although exhaustion, disappointment, frustration, agony and disbelief have visited on a regular basis, I have not experienced anxiety since the first four months off benzos. I experienced anxiety because of a difficult situation, exacerbated by anemia and then prolonged by side effects of psychiatric medication.”  I wrote those words at 20 months off benzodiazepines, then wrote nothing more for another six months. Even without anxiety, the other symptoms were enough. Always and always and over and over again with nothing to mark the passage of time, only a bitter determination to breathe in. To breathe out.

 

I continue to attempt to describe the symptoms, not because I think I can convey the horror of existing like this year after year, but because in the act of repetitive reading you might glimpse the soul sucking tedium of this experience. It often begins around 10 pm or 4 am or sometimes- oh no, please no- both. If I am awake at the time I notice a crushing pressure in my left temple. Then my skin begins to burn and uncanny prickles form across the surface of my brain. This is when I awake with a start if I was lucky enough to be asleep when it began. A barely perceptible tremor emanates from my chest and occasionally culminates in a full body convulsion. I can sense the space between my brain and my skull as it slowly fills with needles. My skin transitions from burning to peeling away. My joints begin to separate as though I am being stretched on a rack and I lie on my arms to stop the feeling that they are moving away from my torso. After about three hours the maelstrom subsides and I am left to either get some sleep or get up and face the day. Not every night. Not always three hours. Sometimes less, sometimes more. Predictability would be too easy. Learning to accept what comes, come what may, is one of the many essential skills that withdrawal teaches.

 

In the end, it all just faded away. There was no turning point, no single glorious morning that it was all better. Instead, I found myself wondering if maybe it wasn’t really getting better- maybe I was just getting better at dealing with it. The change was so gradual as to be almost imperceptible. Eventually, in time, there was no more doubt. I began making plans, and spending more time looking outward than inward. The small signs that things were truly different became more frequent, building on one another until there were too many to ignore.

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Part 5: Resting

For the first time in a decade I am not simply trying to get through from one moment to the next. Many things have changed while I was recovering. I have grey hairs. I am a mother of two children in elementary school. I am less driven, finding joy in my children, and being in nature, and creating art. The anger and resentment I felt during much of this struggle are gone, replaced by peace and an appreciation of everyday life that perhaps cannot exist without trial. These words capture some of it:

 

Those who will not slip beneath
    

    the still surface on the well of grief

turning downward through its black water
    

    to the place we cannot breathe

will never know the source from which we drink,
    

    the secret water, cold and clear,

nor find in the darkness glimmering
    

    the small round coins
         

        thrown by those who wished for something else.

  -- David Whyte
     

from Where Many Rivers Meet 
      

©2007 Many Rivers Press

 

I hope that my story can be a glimmering coin for someone who needs it. What I needed was not medication but honesty about motherhood. I needed support until I could balance on my own. This story is my way of reaching out to offer support to anyone who might follow. In the US doctors wrote approximately 37 benzodiazepine prescriptions per hundred people in 2012. Therefore it is quite possible that you are reading this because you or a loved one has tangled with benzodiazepines and you are worriedly trying to place yourself on my timeline. Please stop. The only certainty with benzodiazepine withdrawal is that everyone is different. While three or more years of recovery are frequently reported, many people feel back to normal in weeks or months. Life is waiting here for you. You just have to keep swimming through the darkness.

 

Physicians must understand that although some may benefit from short term use of these drugs the potential for side effects and dependence makes it not worth the risk for many. Until then, a gradual (5-10% of initial dose every 1-2 weeks) patient-directed taper with lots of reassurance is the best way out.

 

This story is dedicated to the people who answered the phone, sent me an email or text, held my hand on the couch, brought me food, took my children to school, drove me to appointments, listened to me, walked me around the block and gave me hugs. Some people even did all of those things. I will live the rest of my life in gratitude because of you.

 

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Things that definitely helped:

- Believing in my own intrinsic wellness. I didn’t have a chronic illness before these medications, I wont have one afterwards. Unfortunately in my case I had to try almost every medication before accepting that they were not a solution, but I got there eventually.

- Having real life people who knew what was going on and believed in my intrinsic wellness. One of these was eventually my prescribing physician which was a huge help. My parents, some friends… a few key people who I could always count on to remind me that it will get better.

- Recording voice memos to myself on my phone when I am feeling better to listen to during the waves. My own voice sounding like a sane and happy person was a powerful defense against the “it has always been like this and it will always be like this” thoughts.

- Tangible little things that kept me grounded. A bracelet my daughter made, a t-shirt my sister gave me, a spot on the couch where I could curl up and see the framed pictures on the wall. Mementos that told me “It has been this bad before and it got better. Even though it is another worst day, it will end.”

 

Things that might have helped:

- Acupuncture. I had a great practitioner who knew that I was withdrawing from benzodiazepines and could encourage me along the way. Plus I always got a great nap with the needles in.

- Exercise. Enough to get sweaty, three or four times a week (this was only during the taper, afterwards once a week was an accomplishment). Sometimes even when I didn’t think I could do it I would start by seeing if I could put on my shoes, then could I leave the house and getting there one baby step at a time.

- EFT. There are some videos online specifically for EFT and benzo withdrawal. At the very least it was something to do with my mind and body for a few minutes.

 

Things that didn’t help:

- Tryptophan, melatonin, GABA, theanine, seriphos, fish oil, magnesium and any other vitamin that wasn’t clinically indicated. I did take vitamin D and iron which my bloodwork said I needed.

- Lexapro, trazodone, remeron, gabapentin. The lexapro and remeron each caused months of withdrawal in their own right, I only took a few doses of the others so didn’t have a chance to get hooked on them.

- Eliminating gluten or dairy. I experimented with these several times hoping for some relief, but it just made life more stressful and had no impact on my symptoms.

 

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JKS :smitten:  I remember you so well and am so incredibly happy that you finally feel confident enough in your recovery to claim success!

 

Your story is especially important for others to read because you had NO HISTORY OF PSYCHOLOGICAL TROUBLES when you were first prescribed benzos. You had postpartum insomnia that, as you say, could’ve been treated in other ways had you actually been able to meet with your doctor face-to-face instead of over the phone.

 

Your story is both powerful and a wealth of information. But the line that haunts me most is “I want to believe that my life didn’t slip sideways with a single phone call.”…

But we both know, the truth is—it probably did.

 

As a fellow benzo survivor with similar symptoms, here are some of your words that I will cherish as Perfectly-Expressed:

 

Sleep became a dreaded nightly task.”

 

“Sitting with the agony and not running away was about as easy as watching my arm catch fire while cooking and continuing to make dinner anyway.”

 

If benzo withdrawal were a movie, the heroine would meet the beast in battle and fight valiantly until he dropped, broken, to her feet. The music would swell, the audience would relax, only to have a clawed hand shoot out to grab her ankle. They would lock arms once more, ending with the beast stumbling backwards over the cliff never to be seen or heard from again. This is not that story. This is Hercules fighting the Minotaur, only Hercules is Sisyphus. One day a finger in an eye socket, one day a heel to the solar plexus, one day a chance to rest.”

 

“One thing I know is true is that I don’t have an anxiety disorder.”

 

The anger and resentment I felt during much of this struggle are gone, replaced by peace and an appreciation of everyday life that perhaps cannot exist without trial.”

 

“I hope that my story can be a glimmering coin for someone who needs it.”

 

JKS—Yes, your story is not only a glimmering coin, it is the whole damn pot of gold. Thank you for sharing your hard-earned wisdom with us. :smitten:

 

 

 

 

 

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JustKeepSwimming,

 

I'm wiping tears from my eyes after reading every word of this.  It's so beautifully written, so detailed, so honest and so, so relatable.  I  am amazed at your willingness to come back after all this time to share your truth with all of us. It's much needed.  I believe it should be an editorial for a news outlet. it's very educational and written in a way that non benzo harmed people could digest.  Thank you from the bottom of my heart of your generosity of spirit in sharing this. I wish you nothing but happiness and good health.

 

Gratefully,

Helen

 

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"Those who will not slip beneath
   

    the still surface on the well of grief

turning downward through its black water
   

    to the place we cannot breathe

will never know the source from which we drink,
   

    the secret water, cold and clear,

nor find in the darkness glimmering
   

    the small round coins
         

        thrown by those who wished for something else.

  -- David Whyte
     

from Where Many Rivers Meet 
     

©2007 Many Rivers Press"

 

Thank you for the glimmering coin. Your words bring tears of strong emotional release to my eyes, and crying is a rarity for me these days. I’m not sure if it’s relief or sorrow or a combination of both. Maybe it’s just the understanding. The knowing. The not feeling alone and unheard.

 

I am so happy for you and your family and wish you nothing but the continued ability to savor the smallest joys in life that are so much more important than anything else - perhaps the only one positive side effect from these drugs that throw us into the depths of hell. I aspire to one day have a success story to share and a glimmering coin to pay forward, and back.

 

Thank you so much for coming back to share your story with us.

 

 

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Aft35 you were like a big sister to me in the benzo experience and a role model for shining a light back for people following in your footsteps. I’m so happy to reconnect with you on the other side, and appreciate your kindness so much!

 

Helen and Tinkered, I’m honored that my writing moved you. You are not alone and healing is happening for you.

 

I must also add my gratitude to the moderators who are still keeping benzobuddies going. I served as a moderator for a brief time and I saw that it is hard work to maintain such a supportive and beneficial environment for people who are struggling and often have nowhere else to turn. Your gifts are appreciated!

 

With love,

JKS

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The founder and moderators are superheroes that have saved a lot of lives, I’m sure. I am also grateful for their presence and benzo buddies as a whole. Thank you for volunteering as well, JustKeepSwimming. I don’t think I have what it takes to do it and that speaks volumes. I’ll take on just about any challenge. Or used to anyway.
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Thank you so much for this thoughtful, evocative piece. I’m a writer, but I’ve found benzo withdrawal unrepresentable, maybe because it flies in the face of most assumptions about human experience. Yes, we can suffer without even the comfort of our bodies seeking homeostasis. But somehow you put words to the nuances.

 

I’m 2.5 years into this process and, though I’ve improved significantly, I do wonder what healed will feel like. You’ve given me a glimpse of the perspective I may have once I finally look back with the certainty that this chapter has closed. Thank you.

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JKS,

I'm absolutely speechless with tears streaming down my face. This captures the thoughts and feelings of this miserable experience so exquisitely. It comes from a hard fought and hard won fight. I can relate to so much of what you say, I just don't think I could have described it so well, but one day I hope to make an attempt. I had a similar experience except it was in the phase of my life transitioning to menopause. A hormonal shift that I didn't understand. I now know that what I needed was understanding. I needed to understand what was happening to me and I needed the people around me to understand too. But when the doctors insist that you have an "anxiety disorder" and you feel so exhausted and so drugged that you can't even think straight, what are you to do? And only the people that have lived this experience could even come anywhere close to understanding. This same story and so many others has repeated itself, over and over and over again. But you now have a perspective  that very few people in this world will ever have. I'm so happy for you! Thank you for writing this and for sharing it! 

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Charlie and dash thank you for sharing your experience with me. I encourage you to try to write a bit as you go. It doesn’t matter if it isn’t what you want it to be, one day what you are experiencing will feel like a blurry half forgotten memory so your notes now are important. I know it’s a cliche but for a long time I kept a gratitude journal. One line for each day. Sometimes it was just “I am grateful to be off for eight months and twelve days” or “I am grateful to have a house”. I also found it helpful to describe what I was feeling because I could look at it and say that doesn’t seem like something I am imagining, or doing to myself.

 

I do love how the forum looks exactly the same as it did ten years ago. It would be great if one day it was no longer needed, but for now it continues to be a safe haven!

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This has been the first success story in a very long time that really got me. What a beautiful story of suffering and healing. The tears came with the poem of David Whyte. How beautiful. May you live your best life ever and thank you from all my heart for sharing your story. I am 3.5 years off the last of many ct and it's still a nightmare. I really needed your words tonight.
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This is the most profound heartwarming story I have read in this forum. There were time my eyes lit up when I connected with your story. My heart too. I can’t thank you enough for the time you took to write this. All of it. The motherhood parts the support you received and the things that did and did not help.

 

Your work will stand the rest of time to other survivors of this unspeakable experience. I sepeicLly like the part about being anxiety free. If we could help those with the anxiety that come and goes in spurts they would see it is nothing compared to benzo anxiety.

 

I look forward to hearing your updates and wish you all the best.

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JKS, this is one of the most astounding things I have ever read in my life.  To a very limited extent it is for me—as you know, from our “Klonopin Klub” days—a “been-there-done-that” kind of thing, but I could never have put it into words the way you’ve done.  I read part of your story aloud to my husband, who sometimes tells me I am a writer, but I saw the expression on his face, and said, “She outwrote me, didn’t she?”  He nodded.  You really did, and you can be sure I’m glad—especially if your account can bring home to others at least some part of the truth behind this experience in all its horrifying permutations (but also potential for victories—let me not omit that part).  I simply could never articulate it as you’ve done—and, believe me, I’ve tried.

 

I frankly don’t see much of a qualitative difference between coming through an ordeal like yours and surviving a near-lethal storm while scaling Everest.  Your account invokes the mountaineering metaphor, which I sometimes use as well—recognizing, of course, the essential difference: that climbing a mountain is generally a volitional act, undertaken in anticipation of, at the very least, the glorious vistas that will repay the effort and pain involved in a challenging climb.

 

The summer after my father died, in 2021, my husband and I—having both reached our early sixties—climbed Mt. Washington on what would have been my dad’s hundredth birthday.  Washington was perhaps his favorite place on earth, and, once you’re up there gazing at the splendor laid out below and all around you, it’s easy to see why.  But my own run-in with clonazepam in 2012, mercifully brief though it was, forever changed my perception of just about everything, such that I can never do anything like that again without being vividly aware of how utterly impossible it would be if a benzodiazepine still had its savage hooks in me.  All the way back down from the summit, my knees were screaming in agony—but so what?  That was nothing to lying in bed, during my hell-summer of 2012, shaking uncontrollably, convulsed with terror, my joints in so much clonazepam-induced pain that the mere touch of the bedclothes was too much for them.

 

Throughout that period of benzo-horror, my father called me up every single night to see how I was.  It must have been terrible for him to feel that he was powerless to do anything beyond this to help me.  I don’t know whether I ever succeeded in conveying to him how much those phone calls meant, that they were a kind of support beyond price, the absolute best thing those who loved me could do: just to say, “Here I am, and I’m not going anywhere.”  He, my husband, my sister, they were my tangible lifeline.  Most of my friends didn’t get it; some actually thought I had gone certifiably crazy, were unable to fathom how a medically prescribed drug could have so transformed me.  Some backed away, and I could see their fear, their confusion; I could actually forgive it, since since even I sometimes thought I had truly lost my mind.  But my father, my husband, my sister—they didn’t back away.  Nor did my intangible lifeline, the one that was Benzobuddies. 

 

Like you, JKS, I was admonished by a prescribing physician to “Pay no attention to the Internet.”  Really?  Seriously, Dr. Disinformation?  The doctors never once had any part in this whole episode that wasn’t at best useless, and at worst destructive.  In retrospect it feels almost like a conspiracy, although I know it’s more complicated than that.  But Benzobuddies was for me part of a multi-pronged rescue operation, for which I was, and remain, inexpressibly grateful. 

 

Anyhow, JKS, you rock.  And may you rock on and on.  By the way, I know your daughter has a challenge to contend with, but I believe her having you as an model for resilience and perseverance will surely help her to confront it successfully. 

 

Congratulations!  And warm wishes to you and yours for 2023 and beyond -

 

Rek

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Drew28 and rekroywen! So good to see you here  :)

It’s like a reunion of the Klonopin Klub. I’m grateful for your support then and now.

Kanoba and Helen soon you too will be old alumni like us, just coming back to pay it forward.

:smitten:

JKS

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  • 5 weeks later...
JKS, it was incredibly kind and generous of you to come back and write your story as thoroughly as you did. This was a great gift you gave to all of us struggling for hope. For some of us, healing is taking a long, long time… I am so happy that you have recovered, and are able to have a sweet life, your suffering sounded unbearable. Wishing you only the best and thank you again so much.
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  • 2 weeks later...

Oh my goodness, I have tears, TEARS, streaming down my face.

What a gifted and talented writer you are. You captured something that is indescribable and did it with eloquence which is incredible to me

 

As someone that is 4 years off and doesn't come on here much anymore, I REALLY needed this. I liken all of my setbacks to what it may be like for others who have been polydrugged. If you can make it, maybe I can too. Thank you so very much.

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Incredible…. I’m so sorry for all that you endured. Wishing you wonderful years ahead filled with the greatest joy and great health. You persevered thru hell and will be able to handle anything thrown your way in the future. Cheers to you and thank you for reminding us we do get better!! Even after so many meds! Hugs and enjoy your post- med life!!!!!💜
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  • 3 weeks later...

Willhealsoon you will! I remember how much writing a success story felt like the goal. You are writing your success story every day, each day that you keep going. I hope something brought you joy today!

 

Gutsy and warrior it takes a ridiculous amount of time. I gave up on getting better for a long time, tried to just accept how it was. The good thing is you don’t have to do anything to get better, except stay off benzos and stay here. Even if you have a couch day, you are still healing. I used to say to myself “this is another worst day”. There are so many, but they fade away.

 

Boges I used to get so mad at the “everything happens for a reason” people, but I do think knowing that I made it through this helps me to believe in my strength now that I’m a full time pancreas for my daughter! The waves of life come and go. 💙

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