Informed Consent for Benzodiazepines: A Personal Account

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Just over a year ago, I along with over a dozen people testified in person at The Massachusetts State House at a hearing for a bill regarding expanded informed consent for benzodiazepines and non-benzodiazepine hypnotics. Hundreds of others from around the world also submitted written testimony. It was neither killed nor passed but ‘went to study.’ As such, a revised version, H. 3594, was submitted to the Joint Committee on Mental Health, Substance Use and Recovery this April. It needs support from victims, people who have known victims, experts and also those who simply believe in its cause. To find out how you can help, stay tuned for a Call to Action piece next week. Below is my personal account of what happened to me as a result of taking a ‘benzo’ as prescribed. It is also what I plan to submit for testimony this session.

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Dear Chair and Members of the Committee on Mental Health and Substance Abuse: I have no doubt that passing this legislation will do nothing but prevent harm. I would like to relay my personal experience with a benzodiazepine.

I was prescribed a small dose of Klonopin as needed to help with sleep difficulties related to post traumatic stress. I took less than prescribed and not on a daily basis.

I began to have brief transient moments where I would feel either oddly disconnected from my environment or I would wake up and frighteningly feel like I was coming out of my skin. I did not know it at the time, but I was experiencing interdose benzodiazepine withdrawal and it would end up leading me down a path of polypharmacy. For four to five years I was prescribed five psychotropic drugs including the antipsychotic sedative Seroquel.

All my original “symptoms” worsened and new ones began to appear. I was becoming disabled. It was obvious that the drugs were not doing what they had promised, so I took what I considered to be a very big chance and decided to come off of them, because at that point I had nothing to lose.

Oddly, for the first month off I was out of it but I was not uncomfortable. Then “all hell broke loose.” I started having severe muscle spasms which were visible to others all over my body including my face. I became so shaky that I was unable to hold utensils. I began to experience a severe vertigo that felt like my brain was on a ship swaying around in a storm. I could not walk straight. I looked similar to those rare and severe recovering alcoholics who experience a ‘dry drunk walk,’ except that this did not start detoxing off severely abused alcohol — this began at a month off a prescription drug taken as prescribed, and lasted for the next two years. I also had visual hallucinations that distorted people’s faces, changed my body in the mirror and caused me to see things which I knew were not there.

I went to my prescriber, emergency rooms, my general practitioner and walk-in clinics. Nothing came up on tests and I heard many different explanations. My psychiatrist told me that the problem was that I did not have enough friends. One doctor frighteningly told me that I probably had a brain autoimmune disease, and another asked that “didn’t it seem more likely that the absence of drugs unmasked an underlying condition rather than the drugs causing the problems?” His hubris and groupthink-inspired point was dead wrong. Please don’t make the same mistake.

Seriously underestimating neuroplasticity, they all agreed that it would be impossible to be affected by these drugs this far off of them. A few Youtube videos from early survivors and a Wikipedia page, no less, were the first things to point me in the right direction.

For the first two and a half years off of Klonopin I experienced many effects of having a damaged central nervous system. “Rebound anxiety” does not do justice to what people with this syndrome experience — what we go through is beyond the bounds of what is natural, and I find it hard to believe that anyone who has not experienced it would understand. It was as if my adrenaline surpassed its crest and my fear response was constantly activated. The insomnia was truly some kind of sick torture; for months and months on end I only slept for one or two hours a night and it was not as if I could have taken something to alleviate it. Some mornings I would experience night terrors with grotesque figures but I would be fully awake. I experienced sensory overload where I was hypersensitive to light, noise and any kind of stimulus in the environment. I had to wear sunglasses at all times and often closed myself off in a dark closet for periods of time. For me, one of the worst symptoms was an ever-present terrible nausea that persisted twenty four hours a day for years.

Also of great concern was my cognitive state, especially because I was unsure of where this was going. Put it this way: at four months off I was attending a psychiatric hospitalization day program and it occurred to me that I was unable to do ‘the math’ involved in trying to calculate crossing the busy intersection near its building. Navigating public transit was very difficult for me for a long time because of my mental state. I would end up alone in unintended destinations around the city.

The central nervous system of course does not end with the physical and mental but extends to the emotional as well. I was labile at times, experiencing crying spells or hysterical laughter for no reason. Mostly, I was severely depressed. There were many days where every few minutes I would have to tell myself not to commit suicide, both from the uncomfortability of a CNS on fire but also from depressive haywire rumination. If not dangerously depressed, I was anhedonic. As one ‘benzo author’ noted about their experience, I too was for years physically incapable of smiling naturally or even on command; it was as if I had lost connection to those signals or nerves. I also suffered from persistent derealization and depersonalization.

Needless to say, any original post traumatic issues were not helped by these drugs — they were only hindered and then joined by this new horrific experience.

During my lengthy benzo withdrawal syndrome, my mother fell very ill for a year and passed away. That is crucial and precious time with her I will never get back. In our final time together I was largely a shell of myself, all because of a pharmaceutical drug. She left this world with a daughter whom it was unclear would ever be better or return. I was also unable to emote and grieve in normal health. These drugs do not “permit people to function normally in the world” — what they do is largely rob people of their humanity. I am no outlier. Contrary to the point that Dr. Salzman made last year that he could not be bothered to stay to listen to victim testimony, that “even caffeine causes withdrawal,” these are the real world consequences of benzodiazepines. For Stephanie, Brad, Bill and many others who both consciously and with less awareness chose not to endure the ill effects or the torment of protracted benzodiazepine withdrawal syndromes any longer, I would also like to point out that caffeine does not kill people. Make no mistake: this is an easily preventable tragedy on a mass scale.

It has been four years and five months since I have been off of Klonopin. I have only had about two years of relative health, with several residual effects. I am in my first year of social work graduate school. Additionally, I worked for a year as a mental health specialist in a ‘renowned’ Massachusetts drug and alcohol detox program. These are both things that would have been utterly inconceivable on my drug regimen or in the several subsequent several following discontinuation. I saw the gamut of detoxes from every substance you can imagine at the hospital I worked at and nothing compares to protracted benzo discontinuation syndrome.

If I had been told that somewhere between 15% and 30% of people experience these phenomena caused by a damaged central nervous due to benzodiazepines, I would never have taken them. If given the information that they are contraindicated for long term use, that they inevitably worsen original problems in a rebound fashion and create new ones, I do not believe most people would take them in the first place. Please do not falter where others have come so close: I ask you to pass this truly life-saving legislation.

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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21 COMMENTS

  1. Thank you for your candidness and willingness to expose yourself in this way. I, like you, have experienced the effects of a damaged central nervous system as a result of psychiatric poly-drugging. We need to start calling this what it is – intentional poisoning by (often) misinformed doctors and a profit-driven health system that pushes magic pills for every ailment. We need truly informed consent, not just about benzos, but also about the effects of SSRIs and neuroleptics. Sadly, this kind of permanent damage is not limited to psychiatric drugs. A reaction to Lipitor killed my dad. Others experience life-threatening reactions and long-term damage as a result of exposure to common antibiotics. There was a study that was just realeased in the past few days saying 31% of FDA approved drugs are eventually found to have serious safety issues after approval. We need to continue to speak up against a system that pushes profits before people and simplistic answers to complex societal issues.

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    • What is the figure? Something like 100,000 people a year die due to the “medicines” prescribed to them by their doctors. I had a doctor tell me that I was going to take the Lipitor that he was gong to prescribe to me, whether I wanted to or not! I sat there and looked at him in total surprise and then pointed to my feet and said, “I still have choice, just watch this”, and I got up and walked out of the examination room and never went back to him.

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      • Stephen, I believe the amazing Peter C. Gotzsche states in his magnificent book, ‘Deadly Medicines and Organised Crime: How big pharma has corrupted healthcare’ that actual number of deaths is 500,000 a year. Only, you’ll never hear corporate media report this.

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    • Thank you Kindredspirit. I’m sorry for both of your experiences.
      I will look for that study.
      I am horrified by The 21st Century “Cures” Act which was passed in December. Not only because it gives millions for forced outpatient psychiatric drugging (AOT) but because it lessons approval regulations even more. It was marketed and bought, as a streamline for scientific innovation. Sen. Elizabeth Warren (one of only 2 congresspeople who voted against it), called it legalized fraud for giant giveaways for drug companies. Her speech is really something: https://www.youtube.com/watch?v=A1s12VfvS2g
      According to Dr. Jerry Avron, 89% of drugs are already approved upon 1st pass.

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  2. Sonja

    Great blog – and such a powerful story told with such deep insight based on “lived experience” with these dangerous and grossly over prescribed drugs.

    I had heard bits and pieces of your story in our prior conversations but had no concept of the depth of the living hell you experienced. You are one brave and resilient woman who is engaged in a very important battle against Big Pharma and Biological Psychiatry.

    Keep us posted on the the progress of this legislative effort; for I want to help in any way I can.

    Comradely, Richard

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  3. “May be habit forming”

    I always thought addiction was falling in love with the high and saying screw everything else in life.

    Then I became addicted to benzos and found out the driving force is to keep taking more is all about avoiding the withdrawal reactions from hell and nothing to do with the buzz or little high. They rarely tell people about withdrawal reactions when prescribing psychiatric drugs.

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  5. An excellent piece, so graphic I have a good idea of what to do if I’m forced to play medic for one of these withdrawals, which I’d feel obliged to do in order to keep someone from coming unglued on the street- I’d never want to conduct one voluntarily any more than I’d do an alcohol withdrawal, which I have done for the above purpose, only it was collapsing on the street in those instances.

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  6. “what we go through is beyond the bounds of what is natural, and I find it hard to believe that anyone who has not experienced it would understand.” I believed the same thing in a protracted withdrawal from transdermal methylphenidate. No species could continue to exist if it could feel the way the chemical’s damage made feel. It was ungodly, unearthly, not even possible in a human being. With enough damage from drugs we are no longer genuine homo sapiens. I wanted to be dead almost always, but did not want to kill myself. So much emphasis on suicide prevention, not much on preventing post psych drug wishng-to-die syndrome. The early morning awakenings in a state of horror that seemed to be validated by the facts of my and every life. There wasn’t a future, just a black chasm to step into for more of the same, or worse. I believe what people say about benzo withdrawal; I get the feeling it is even worse than dopamine drug withdrawal.

    Ms Styblo’s and fellow activists’ messages must be heard, loud and clear. You never know how many people you might spare the same experience. Right now there are people who are doomed to trust their doctors and start on a mlld safe benzo. It’s like boarding a kiddie ride and ending up on the tallest fastest most rickety roller coaster ever built. Not what you bargained for. Ms Styblo’s writing might help a lot of those potential sufferers head in another direction when offered drugs by a pusher.

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    • Thank you BetterLife. I have never heard of ADHD drug patches, they sound like a veritable nightmare.

      Upon looking it up I found the ubiquitous “Methylphenidate’s precise *therapeutic action in ADHD is not known*”. You know what: what is happening is those grey areas is a mass disaster. Why are people so comfortable with imprecision involving the brain? I saw similar writing in my Klonopin leaflet. I believe it even said its mechanism of action “dissociates synapses”. Sounds really healthy, especially for PTSD.

      Well put roller coaster analogy.

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  7. As someone coming off benzos and going through utter hell which has left me bedbound for two years with a myriad of symptoms from severe light sensitivity -eyes and face to total postural collapse with collection of ear pain to nerve pain from head to toe including my teeth…and another 20 things added on…

    I have been dismissed by everyone in the medical field to the point they have ganged up on me to say that I have an imaginery health belief. I have had to pay for several tests to show spinal damage to jaw damage to neck damage to teeth damage ….yet they see my chronic fatigue and fibro symptoms as hypochondria…the doc has even dismissed im in withdrawal and thinks i should up the dose ….for what purpose i ask when tolerance will be a factor within weeks…NO answer…its just his belief …Belief based on what i might ask? That what I am and others experience when we lower the dose like increased muscle spasms and seizures is something i imagine…I despair but fight on , but for others they will doubt oneself with this level of incredulity from people who they would like some validation of what they are going through…..its beyond disgusting…

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  8. First I’d like to thank you for your article exposing the truth. I almost don’t want to comment here, because I become completely outraged at how we suffer at the hands of our psychiatrists. I was mis-diagnosed, presumably deliberately, 40 years ago, and heavily drugged for 35 of them and given a dozen ECT’s after I became so iatrogenically ill from the drugs the doctors ran out of ideas. So although I survived (just barely) multiple cold turkey psychiatric withdrawals that my Mental Healthcare workers said was ‘just fine’ to do, I suffered withdrawal induced psychosis I never knew existed. It was equivalent to taking 10 hits of LSD without taking any. Pure HELL, and if I would have had a gun in my house at the time, I prayed for one every second of every minute of every hour of every day for months, I would have used it. However, following my Effexor, Lithium, Trazodone & Klonopin ( all cold turkey after 35 yrs) I did not come out unscathed. It’s taken me 4 years to heal the cognitive damage done. And I can easily work with what’s left. I also researched Psychiatry & drugs for 3 years solid to find out why I had suffered so much for decades, only to find out it was from the ‘medicine’/drugs my Psychiatrist’s prescribed. So God Bless you for writing and educating others.

    Respectfully,

    Sandra Villarreal

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  9. I’m sorry you’ve been through so much adversity. There’s nothing worse than having your health be damaged, and there are many possibilities for it too. I think I developed a lifetime of substance dependency, and I do believe I still have an underlying health condition that continually makes me feel the need for something to “feel better”
    Is it possible your symptoms and damage to your nervous system are from a wider array of psych meds in addition to the benzo and an undiscovered underlying health condition? Everything we ingest in our bodies, through our airways and skin has potential to cause damage, including our food & water supply. It’s a struggle, but keep doing the best you can, I applaud you for testifying to increase legislation to restrict benzo-adminstration. Let’s keep the fight going and may our Almighty Creator reveal and heal your medical condition.

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    • Thanks. I’m pretty much completely physically healed at this point. There’s no doubt the other drugs compounded my situation and were totally detrimental to my physical, mental and psychic well being. But out of them, I believe the benzo was the most grievous culprit. Polypharmacy has an unpredictable, synergistic effect. (That is not to suggest that single drugs can’t also be very detrimental on their own).

      I use to believe there was something fundamentally deficient in me which prevented me from reaching a certain level of well being/contentedness also. Turns out it was all the drugs and being ‘a sane person in an insane world’ as they say (which doesn’t acknowledge trauma [or oppression])!

      Good luck to you.

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  10. Last year tried to taper off 1 mg of xanax 3 times a day, could not get lower than 1.25 mg in divided doses and ended up in the hospital and put on klonopin .5 mg 3 times a day ( the generic clonazepiene ) , Remeron , ( generic mirtazepiene ), and gabapentin . Off all meds but can’t stabilize at .25 mg of clonazepiene twice a day to taper further. My question is how to handle another drop which will increase burning nerve pain in spine ? I can not tolerate a return to gabapentin to treat due to side effects of that drug. My DR. does not believe a slow taper could cause this symptom or any other I have such as, severe chills , internal vibrations , lack of appetite, nausea etc. Does anyone have insight on how to survive the burning spine ? I do not have any other health issues and Neurologist agrees the issue is prescribed long term use of benzos.
    Please help as want my life back from prescribed drug no longer needed

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  11. Sonja, I am from Massachusetts myself. I no longer live there but I believe not only are you getting some of the worlds best liberating state agenda organized issues to be represented, but you are on a curve line that is very very commendable and I would be there right at your side if I were educated enough and not a “mega-prescribed” user.

    Just like this site recognizes, from the limitations psychiatrists actually have, to explore enough statistics, to gather evidence towards helping us more than just prescribe for us based on categorical statistics in variables for certain damned labels. Im like, holy shmoly, how did you do it? I could feel your tortured spirit, your pure hell. I felt every second of it.

    I experienced some symptoms that are now strange to me after being on several trail and error medicating, actually it will be 17 years now I have medicated. I went off em twice and it was exactly as you said, I clung to my life, literally. The times I went through this brought me back to meds as I felt no other alternative but to die unless I went back on them.

    Sonja, there is nothing more that I would like than to be off the meds. They have increased over time including adding serequel for sleep, and having horrible symptoms if I do not take my zanax, 1 mg 3 times a day, including 300mg of venflaxazine. Getting off gives me the electric shocks, brain zaps, flu symptoms in my body and other heightened senses of fear, depersonalization and so shaky I was ashamed which actually would traumatize me and continue in complete hell.

    Pchys tell me, I will be on them for the rest of your life. I believe in change and healing. But, I cannot afford to go through four years of hell withdrawing as I am single mother to a teen boy and work only part time. This really scares me too, I dont want to go through what you did, again it totally scares the (&%!*#) out of me. How did you manage paying bills, working or caring for children. You must be young. I totally thank you for who are and what you are trying to accomplish. I feel invisible and getting older at this time is just how life is. I know I used to be very very bright, not anymore, Im Not in hell, but not quite living either.

    How did you cope through those 4 years of {as Im so sorry for you} pure torturous hell? You have a persevering and wonderful spirit. Can you perhaps offer to share a website for organizing treatments in getting off meds? Thank You Sonja for sharing !!

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