Waking From the Nightmare: Is Recovery From Akathisia Possible?

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Is recovery from akathisia possible? Seven years ago, my answer to this question would have been “no” because I still had a blind belief in the medical system despite being utterly betrayed by it. The medical professionals with whom I had been working had told me that once someone’s “conditions” (meaning the drug-induced movement disorders I’d developed) had deteriorated to the level mine had, the damage was permanent, and full recovery was unlikely.

That sentiment was reflected in the piece I wrote for Mad in America four years ago. I’d made the short film about akathisia, “How Bad Can Good Be?,” from a hopeless state of mind. My hopelessness seemed reasonable at the time because I was told it was hopeless. Everything I read, everywhere I searched, everyone with whom I spoke either reinforced that narrative or had no hope to offer because they claimed they’d never seen anyone who had been so damaged by medications. In fact, my neuropsychologist called me the “Lucy of Akathisia.” As if I didn’t feel isolated and freakish enough.

But what was there to feel hopeful about? I had been broken by a system I’d been taught to trust with my actual life, and in turn, that system blamed what it could on me, the patient, while shirking any responsibility for what had happened to me with the callous disregard of a sociopath.

The Medical Model

For those who haven’t read my first article, I’ll summarize briefly. I was medicated with an SSRI after a traumatic brain injury (TBI) in 1997, and after experiencing drug-induced akathisia, my diagnosis was “upgraded” to bipolar disorder II. It was then I was placed on the polydrug carousel that came to characterize and inform the remainder of my adult life, drugs that included atypical antipsychotics. I won’t go into too much detail because my story is not unique, nor particularly interesting, though it is several chapters longer than most. During the years following all this, I experienced increasing levels of suffering due to akathisia. While not the sole consequence of these drugs, akathisia was easily the worst and after my first bout with it, it never fully subsided. In a way, it became my baseline.

But nineteen years later, in 2016, I had reached the brink of what I could tolerate. With everything to live for, I wanted to die. And when I was told my suffering was caused by medications, not mental illness, the floor shifted, and walls began to cave in all around me. The diagnosis of bipolar disorder was removed and in its stead was a litany of drug-induced, tardive conditions that continued to reveal their damage as time passed. I was no longer someone with a sanctioned medical problem like bipolar disorder, I was suffering from iatrogenic harm. I had been used and discarded by a system whose reason for existence is to help people at their most vulnerable.

At this juncture, I had an understandable aversion to doctors, yet I was still totally beholden to, and dependent on, the medical system. New medications had replaced the psychiatric drugs—medications geared toward calming my shredded nervous system. The cocktail I was on was risky. The psychiatrist who had taken over my care after I’d withdrawn from Latuda, the final atypical, ordered a sleep study on me to make sure I was steadily and consistently breathing at night.

This was the only help and hope doctors can or could offer—more medications, designed to arrest and calm my overexcited, damaged nervous system: treating the failed treatment with other dangerous treatments. In other words, the medical model of care. But the medications they gave me to help me walk, speak, and sleep did nothing to quell the akathisia stubbornly grinding its way through my resolve. There were days I could barely breathe, barely move because I felt frozen in terror—but the compulsion to move overwhelmed me.

And then my body decided it could no longer move.

Cell-Crushing Fatigue

In 2019 we went to New York to see my editor. We’d gotten in late and the next day, we decided to go to Midtown. We walked the couple of blocks to the subway and once we reached the underground train, something was happening to me—I can’t explain it other than whatever filters my brain had in place seemed to dissolve. An uncontrollable urge to throw myself onto the tracks overtook me. At our stop, my husband had to help me up the stairs to the street, and after that, I have no clear memory other than sliding down onto the sidewalk, unable to speak, walk, or move. The barrage of sights and sounds that made New York my favorite city assaulted my senses—my head was screaming. I couldn’t process any of it. I shut down, crashed, and then felt myself float away, completely dissociated. We got back to the apartment, and I stayed there for two days in bed, fitful, sobbing, restless, terrified, and overwhelmed. My head was screaming with a kind of psychic noise I couldn’t quiet. I was unable to leave the apartment except to go visit my editor at her home. When we arrived at her place, I needed to lie down immediately. Something was very wrong. The akathisia still writhed inside me, gnawing away at me and throughout my limbs, but through some sadistic cruelty, I no longer had the energy to move and quash it.

The preliminary diagnosis was my worst nightmare. Myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, was considered an autoimmune disorder with a distinct feature: post-exertional malaise (PEM). This meant that something as simple as going to the store, to dinner, doing laundry, or walking up a flight of stairs could put someone with ME/CFS in bed for days, even weeks. Even an enjoyable social event was too much. I’d noticed my ability to work out had been dwindling during the aftermath of discontinuing Latuda, but after New York, it gelled for me. Working out, being active, had been a huge part of my life, and suddenly, even the smallest exertions created cell-crushing fatigue in me that was never mitigated by rest. My ability to write was compromised by a type of cognitive haze, i.e., “brain fog.” Add to that a constant raw throat, low-grade fever, pain—all over pain, swollen glands, headaches—like having the flu, all day, every day, and any physical, mental, or emotional exertion made it all worse. Ironically, sleep eluded me, another hallmark of ME/CFS. I could only writhe on the bed, body vibrating, and wait for rest that never came.

In short, I had tardive, chronic conditions caused by medications, including akathisia, that created the compulsion to move, and new conditions that disallowed movement. To make matters worse, I was on at least four different medications to treat/manage the tardive effects, and they, too, were never meant to be taken long-term. Everything I had cultivated throughout my life to help me survive was being stripped away. I couldn’t move, create, write, or think. I felt trapped, bitter, and in total despair. Hopeless.

This is (Not) Your Life

By 2020, I’d adopted the same attitude as my husband, Kent, regarding the medical system. It was imperfect, as were the people working within it. And yet, even as I knew this on a conscious level, it took a worsening of my conditions to realize that if I continued to allow the system that damaged and betrayed me to define my potential for healing, I would never heal.

My husband and I noted that my symptoms often overlapped, making it impossible to determine what was causal, and what was merely correlative. The tardive damage from medications, subjectively expressed in people, is so varied it often prompts prescribers to invalidate the harm as psychogenic, and yet we knew what was happening to me was physical.

The realizations came gradually. When someone sustains head trauma from an accident, no one doubts their symptoms. If the individual can suddenly smell popcorn when there is none? They know what part of the brain has been impacted. Loss of speech, they know. Vision disturbances, they know. Frontal lobes are almost always affected, but these symptoms are a bit trickier to nail down. If someone has a stroke, the brain can and often does appropriate other parts of itself to regain functionality—homeostasis, even. In other words, working backward from the symptoms gives vital clues to which part of the brain, which system, has been injured.

So, what about a common, seemingly innocuous side effect of medication, something that no one thinks too much about, like dry mouth? If we pay attention to which part of the brain is in charge of salivation, the answer is the autonomic nervous system. In fact, the autonomic nervous system is in charge of so many of our bodies’ processes, that to have even one part of it mucked up is to invite a system-wide crash, which is exactly what was happening to me.

At one point, I researched the effects of chemical warfare and medications used as agents of torture in Soviet Russia, and my worldview underwent a profound transformation.

I had a chemical brain injury from medications, not, as the doctors said, irreparable, irreversible damage. For the first time in a long while, I had hope. Because if recovery was in my hands and not theirs? I would heal.

TCBI (Traumatic Chemical Brain Injury)

We went in to see a TBI specialist who completely validated all we’d been through. He tested what parts of my brain had been injured—too many to recount here, but his first order of business was to create neuro-therapies suited to my specific symptoms and injuries. I had, by that time, experienced tardive, cervical dystonia for three years. My neck simply wouldn’t move. He described the neuro-mechanisms of trauma, and we began working on moving my neck. I learned the role of “clean” eating and diet in healing a brain injury and maintaining emotional well-being. I learned that a sustained trauma response can be self-perpetuating.

Other vital systems are under the purview of the autonomic nervous system, like the endocrine system and the enteric nervous system. I found a specialist who tested not only my hormone levels but my nutritional levels as well. Fun fact: when you are in a constant state of heightened nervous system arousal, which seems to characterize akathisia, your body cannot absorb the nutrients from food. The brain is our hungriest organ. I’ll let you infer the rest.

It was around this time my beliefs shifted again. I began to see my brain as part of a whole system. Once I did that, I fashioned my life to fit the paradigm of “healing from a brain injury” instead of “managing the results of permanent brain damage and other miscellaneous health catastrophes.” I changed my eating habits and paid attention to what my nervous system told me. However, the symptoms and consequences of ME/CFS were a constant wrench in my attempts to recover. Even the TBI specialist told me that there was no way to cure an autoimmune disease, there was only “management.”

It was Christmastime, 2021. I was, by that point, on daily oxygen and as I lay in bed jittering and writhing, my son came in to tell me he was in love. In a flash, I saw their children—children I wouldn’t be able to babysit. I saw my own granddaughter and the years of her life I’d missed, and it was in that crystalline moment I said to myself: I MUST GET WELL.

I would not miss another moment of my “one wild and precious life.”

Life, Worth Living

So, in a very real way, finding the road to recovery began with a conscious choice, but the steps leading up to that choice were myriad and haphazard. We tried things that were disappointments and we found things that edged me a little closer to functional. But throughout all of it, my husband never stopped searching for answers, and I never grew complacent. I had tried the hopelessness of, within, and through the medical model, and at times I had fallen into the despair of others who had been harmed by medications and who also believed they would never recover.

The thing is, I’ve never been very good at conforming to expectations of any kind. It was time to find my own way back.

In the next few weeks, I’ll be addressing more about how I got here, and why I believe recovery from psychiatric drug harm, including tardive, chronic akathisia, is possible. There will be no blueprints, instructions, or “E-Z” steps because they don’t exist. I wish they did. But what I have to offer, what any one of us can offer each other, is hope.

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53 COMMENTS

  1. Your article was phenomenon description of this disorder. My story is so much like yours , including the dates of being polypharmed with multiple meds, including SSRI, antipsychotics, benzos,…. for bipolar disorder in late 1990’s. Though I discontinued the meds {no insurance}, I was diagnosed with Tardive Dyskinesia. In fact I can not sleep due to non-stop movements. Thank you. I am not alone…

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    • Thank you for your kind words. I am so sorry you continue to struggle with the adverse effects of medications. It’s unfortunate that we are not alone, and our story is the story of too many lives, derailed. If you haven’t read my husband’s piece on MiA, I highly recommend it. He and I are both attempting to distill some of our experiences in forthcoming articles to provide insight that might, at the very least, help people see these injuries in new ways so they might find new paths to recovery. Thanks for reading and I wish you way more than luck. – JA

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      • Thank YOU for sharing your experience thus far and as you go forward. As I have been working, struggling primarily on my own and with the help of others with the most experience and insight into these issues (nope, sadly not my prescribers… the FB group Beating Benzos), the talk of iatrogenic damage from PRESCRIBED drugs comes up over and over and over. I’m trying to stay a step ahead of the prescribers so that, just in case they decide to do a rapid taper, I have a small “stash” set aside to slow down the taper. Right now though, I’m ahead of the game because I’ve been “lucky” enough to work with very disinterested prescribers. I WANT more involved practitioners, but there seem to be very few who understand the damage done and the necessity not only to do a slow taper, but to bring in supports like exercise and clean eating.
        My medication list is as long as my experiences, so I’ll wait til you finish, then hopefully learn from your journey to be able to write one of my own by utilizing your interventions and experiences. Ahhhh… tangential thought processes. One of my side effects of my mental illness… or is it the medications?

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  2. Yikes! Who knew this was a “thing”, right? Reading your post, I am humbled. How could someone be “bounced” around so much by the health system? It’s unnerving. My Mother, in the last few years of her life, was always concerned about “side-effects.” It drove me crazy I just wanted her to be well. Now, I see that perhaps I bestowed my prescribing physicians with too much power. I look forward to your next post, meanwhile, I’ll be here…checking up on what’s in the medicine cabinet!

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  3. I think it was around 20 years ago that I first heard about the use of manganese salts in treating tardive dyskinesias. Of course it was never promoted, being a bit tricky to use and offering no patentable windfall profits for our pals at Big Pharma.

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  4. Ms. Carter-Winward,
    The term described as TCBI is new to my research…& am grateful for this intel. Much of your story parallels my own, but for your wonderful companion. I envy the support in your struggle. I share your enthusiasm for PROPUBLICA & their “Dollars for Docs” registry, citing it since 2018 in my writing & comments. They exposed my diagnosing doctor as snorkeling up $65,000/annually from Pharma, beginning in 2013/1st year of ACA Sunshine reporting. It explained so much to me…and is a valued tool since.

    The more I read of your experience & process addressing the myriad (shared) damages AND semantic limitations/roadblocks to effectively heal them, I became more excited, as it revealed many shared ‘light-bulb’ moments ..& the change or creation of tactics to support my own brain-healing strategy. As an aside; Akathisia & dry mouth (still) are also on my long list. Dry mouth has been chronic-the good news is I constantly hydrate like a MF-er…always good.

    It’s been 3 years since my seizures have stopped-beginning immediately following a multi-year, doctor-guided withdrawal & vacation of the drugs & THEIR bipolar/SMI diagnosis…. AND complete overhaul of my diet & habits/relationship w/MY brain.

    Although I had specific, observable motor damage symptoms signaling a VERY specific subcortical focal brain lesion (per Mayo/J.Hopkins-causes, Parkinsons OR antipsychotics-I don’t have Parkinsons), it wasn’t conventional cause/effect…as doctors tried to characterize (& minimize/dismiss it)….it was the comprehensive WHOLE of the poisoning. The overlapping, blurred lines, continual seepage of 11 years of toxicity (like poisoning groundwater) was clearly linear to me, haphazard & ’emo’ to medical professionals concerned about criticizing other docs & liability, with a dose of gender-bias (“hysterical”).

    They acknowledged the medically documented injuries & labs, unwilling to assign cause or blame… Ironically, if I had been a “street drug” user, it would have been ALL that they would point to as cause……& that included the prestgious Barrows Neurological Institute, Phoenix, Az. I hope by now, they have expanded their acknowledgement of iatragenic brain damages…& can say it out loud to a frightened, suffering client.

    My current, precise “E-Z Read” 1-page synopsis/chart showing timeline/drug dosages/repeats/ADR’s over 11 years (w/COLOR highlights!) has just now started to make a dent with primary caregivers….without ‘noticeable’ loss of my credibility. I monitor THAT constantly…if perceived, time to try with someone else.

    I have worked on my ‘presentations’ for years now; hard editing, clinical delivery, soft tone. Using precise medical terms….”meeting them where THEY are”.. an ironic, tired psych-industry trope.
    Ridiculous but necessary.

    I now characterize the seizures as PNES (psychogenic, non-epileptic), as views towards that descriptive have become less-stigmatized, & seen as a ‘legitimate’ adaptive response to trauma, physical and/or psychological.
    Baby steps with doctors. Sigh.

    As I age, what I formerly skipped sharing out of exhausted futility, has become essential, as to avoid ever being prescribed ANY psychotropic in the future. Cavalier prescribing of psychotropics for seniors is abundant & a disturbing, deadly practice.
    I must establish this set of facts NOW, for the record…”ALLERGIC TO ALL PSYCHOTROPICS”. Their fear of liability will protect me…somewhat.

    It is uplifting as time passes, to find validating data, particularly from a ‘fellow traveler’ determined to KNOW WTF happened…and listen & respond to what the brain is instructing us to do to ameliorate & restore.

    Thanks so much.
    P.S.-
    In 2018-19 I wrote for Healy’s RxISK website “The Unicorn: Changing a Diagnosis” & MIA “Full Moral Status”.
    As I was dealing with the seizures 2016-2019, I refrained from reporting them until I had a better understanding…& could calmly assess.
    It took a minute.

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    • I’m so sorry this is your story. This is something we can offer to one another–we are not alone, and the importance of this is becoming clearer and clearer to me with time. Thank you for reading and sharing. Knowing I’m not alone gives me hope, too. – JA

      *Update* I enjoyed your piece on RxISK. Thank you for sharing it. We do present a threat to the medical model. That’s not a bad thing. Take care.

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  5. I must agree, hope is vital. I never bought into the hope destroying “life long, incurable, genetic mental illness” lie, that my former psychologist and psychiatrists were gas lighting my husband to believe.

    I knew my grandmother was never “psychotic,” and she was quickly weaned off of Stelazine, due to an adverse reaction to it. Which my so called “mental health professionals,” who’d never met my grandmother, fraudulently misdiagnosed her as “psychotic.” Which, of course, was illegal and immoral, even according to the “mental health professionals” own self proclaimed “ethics.”

    Nonetheless, I came across this interesting article, which may help to further explain the American “mental health professionals'” ten years ago debunked, but continued DSM deluded behavior.

    https://www.sgtreport.com/2023/04/the-american-dunning-kruger-epidemic-or-why-ignorant-people-are-so-sure-theyre-right-2/

    https://psychrights.org/2013/130429NIMHTransformingDiagnosis.htm

    I mean there is zero doubt, that “power tends to corrupt, and absolute power corrupts absolutely.” And the undeserved right to force drug innocent people has totally corrupted the “mental health” industries.

    But the article does also point out a supposed “illness” that too many of the so called, unjustly given too much power, “mental health professionals” may suffer from. You people defamed me and my grandmother with your ‘invalid’ disorders, so I’ll point out a supposed disease you people may suffer from.

    But how is any of this “medical” defamation of character productive for society? It isn’t, so all this scientifically “invalid” DSM defamation of character should end. And the US should return to a constitutionally designed society that respects the rule of law – which the US was intended to be – but that an unjustly given, too powerful, and scientific fraud based, psychiatry and psychology do not respect.

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  6. I had Akathisia realy bad when I had a mini stroke. I can’t imagine living with it daily. No one really talks about this symptom and my doctors hadn’t even heard of it. My best wishes to you living a fufilled life!

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    • Thank you for the good wishes. Yes, I know someone who says she’s had akathisia her whole life, sans medications, which further illustrates that akathisia must be a presentation, or expression, of brain dysfunction. Certainly, an acquired brain injury has a host of these potential symptoms. I’m very glad you didn’t have to suffer with akathisia for long. Thanks for reading. – JA

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  7. I, too, have been harmed by Big Pharma psychotropic drugs.

    I cringed when a psychologist I was seeing asked if my bipolar sister -in- law was medicated!!

    Really, being medicated is the solution?

    Like it’s an all or nothing deal. What a lie that being medicated is the answer ??

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    • Uncontrolled sense of restlessness and discomfort in remaining in one place, induced by many different psychiatric drugs. The name literally means “Can’t stay still.” It is mostly a subjective internal experience that most folks would not notice unless they asked about it. It is reportedly very uncomfortable! I’d love it if someone who’s had this experience can add some to this description, as it seems very clinical to me and I don’t think conveys how awful it is to have to put up with.

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      • Hey Steve,
        I had akathisia for 18 months, four of which were incredibly severe. At that stage it is accompanied by an awful sense of dread and doom. I remember getting through each breath was torture, minutes seemed like hours. It is completely alien to normal experience, the mindset of suffering is just off the charts, indescribable.

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        • My understanding is that it’s far worse than most who haven’t experienced can imagine. I went through a VERY brief period after taking too much caffiene and being up all night. I couldn’t stand up, sit down, lay down, close my eyes, walk around – it didn’t matter what I did, it felt wrong. I’m sure this is a tiny fraction of what it would be like to have full-on akathesia, all day, every day, especially if your doctors didn’t warn you of it, or deny or minimize the effects on you. It sounds perfectly horrible!

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      • Mr. McCrea,
        ‘My’ aka manifested after
        my ‘lead’ (antipsychotic) prescriptions were dropped into & yanked out of my brain 13 times in 9 months …in addition to a carousel of ‘base’ benzos, “mood stabilizers”, & anticonvulsants.

        Geodon (ziprasidone) finally plunged me into aka…not knowing what was happening to me. My state-approved part-time job had me walking, pacing, circling the cash register island hundreds of times a day. I picked at my scalp until it bled. I couldn’t sit thru a 1/2 hour t.v. show, pacing, walking. I reported it at appointments FOR MONTHS. The response was up or down dosages of zip!!!

        I had stopped eating (a first), losing all the previous weight the drugs had added…and then some. Alot. My flat affect belied my intellectual concern about stopping eating. **This article’s author shed some light on the autonomic effects that caused my total indifference to food.
        Drugs caused me to shrug & very quietly worry. I didn’t know what to do…and I was always drugged…..with stripped credibility.

        Weird thing…I could drive safely…in short bursts. But was paralyzed by going on the interstate…my former life had revolved around road-travel. Who was I?

        Finally, my brother, an R.N., came by, took a look, & packed me up to the E.R….finally getting admitted on a medical floor, NOT PSYCH. THAT was significant.

        I was on the verge of comprehensive cardiac arrest…..arythmmia, bradycardia, malnutrition/anorexia being diagnosed that day. They were comforted by the resident psychiatrist ‘explaining’ how bipolars had a 25% premature mortality rate. Well ok then….we’ll just wait until it’s over….

        They put me in a private room, fully clothed (a week!), and tried to balance heavy sedation with not contributing to outright heart failure…which is listed on the side-effect warning. 8 MORE DRUGS.
        (I have the hospital records, but I can’t look at them anymore)

        As my brother was an R.N., they skirted the connection. He was happy to follow their lead as I was a ‘burden’…but still had a$$ets he wanted to ‘manage’…following HIS 2 bankruptcies. He wanted Power of Attorney and legal guardianship.

        When I checked out-frail, wobbly, stunned….(and ‘medical orders’ to drink Ensure & whole milk for nutrition (!!!)), I was immediately state-certified as SMI, a separate thing in Arizona, which opened the gate for federal dollars to flow to the state behavioral health mgmt contractor.
        The effects of aka took months to leave me.

        I was now fully, gov’t sanctioned “disabled”. Years later, as I recovered from the anaphylaxis, Neuroleptic Malignant Syndrome #2, & subcortical focal brain lesion (all documented) caused by SMI-level “treatment”, I called the director of that state clinic, asking for that damning paperwork. She was surprisingly cooperative…calling back in 5 weeks…she said….. “Well, you see, ummm, cough, pause…We don’t do things like this anymore”….and long, awkward silence.

        WELL, that wasn’t true then or now, but it’s the closest I’ve ever gotten to an acknowledgement of mistakes made.

        And so what.

        As you may know, I self-rescued successfully after 12 years (2004-2016]…a doctor-guided withdrawal (2.5 years) and vacation of bipolar 1 diagnosis & de-certification of SMI…in writing.

        I didn’t have much Hope left, but after meeting Despair, I had nothing to lose.

        And anaphylaxis was their kryptonite.
        (Unspoken) blackmail can be a beautiful, elegant thing.

        “You live for the fight when that’s all that you’ve got”.
        Mr. Bon Jovi nailed it.

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          • Mr. McCrea,
            I don’t believe that anyone in the state/ medicaid system, from social workers to the management ‘teams’ believed they were helping me…or gave any thought to that notion. They had found their ‘career’/cash flow that required little education, little oversight, and dealt with a population that had no credibility (to outside observers) in the event of complaints. Their 100% turnover rate (at my Arizona ‘community’ clinic, annually reported by ACI services) addressed their irritation dealing with clients for such low wages.

            Terrible ‘mistakes’ were easily managed ‘in-house’ (more sedation,/”write us a complaint-we’ll look into it”) when dealing with clients lacking resources & true advocates….not Pharma-funded NAMI, MHA, or state sponsored ‘advocate’ services, who were positioned to gently guide you back into the fold, stating ‘you had been heard’, a patronizing, gaslighting non-response to real-world danger & difficulties.

            If you followed up, you were characterized in clinical notes (I have mine) as inappropriate (my fave & proudly), hostile, depressed, agitated, in crisis, decompensating….or as Dr.Leonard Sax described it, “….any deviation from a continual smiley face…” in his 2013 WSJ article….all leading to mo’ drugs, mo’ sedation-quiet compliance being only secondary to cost & liability containment.

            It’s the economics, not the ‘helping’. After 11 years entombed in the industry, private to state-sponsored, coast to coast, I met 2 people who were kind & well-meaning; notable but without power to help anybody at all.

            More to the point….
            Various levels of casual cruelty were abundant. The controversial Zimbardo Stanford Prison Experiment offers an interesting & sadly consistent frame of reference to the local clinical temperament that I experienced & observed….a dehumanizing environment for all.

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          • Sadly, I can validate all of your observations in the people I’ve seen have to go through the system. Professionals who are prepared to be vulnerable and really care are rare and are themselves often attacked for doing so. I apparently had “bad boundaries,” according to those who wanted me to toe the line and stop giving my time and energy to actually trying to help people get OUT of the system and manage their own affairs. Eventually, I had to give it up because it was clear that the intention of “the system” was VERY different than my intention!

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          • To all in this thread, I’m so sorry for your suffering, and thanks to those who were able to describe akathisia in their own words and terms. It is a subjective experience, but there are some hallmark symptoms that clinicians ought to know by now. It’s shameful, really, that the onus rests on us to know more than most providers. Be well, and thanks for reading. – JA

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      • It’s important to remember that ‘akathisia is the worst description except all others.’

        One of the biggest obstacles is describing what the experience is like and what makes it ‘painful’ when at times it can be almost pleasant and more like hypomania. Mine rarely flared up until I suddenly began loosing the weight I gained from zyprexa. Loosing 75 pounds and being back to my college weight is great, but loosing the ability to control my body movements just isn’t worth it.

        The biggest obstacle I’ve found is finding a medical professional as fascinated by my medical condition as I am.

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  8. Wow. Thank you for your article about your journey with polypharmacy and akathesia, and most importantly, healing.

    I was “diagnosed” with bipolar II in 1987 by “world class” psychiatrists, although I have never experienced mania and virtually no hypomania, whatever that is. I was on MAOI’s, then SSRI’s, for 35 years, plus mood stabilizers, benzodiazepines, and atypical antipsychotics for much or all of that time. I have a Masters degree in social work, and was very close to finishing my second Masters, in contemplative psychotherapy, when I began to struggle with anxiety and depression, and most likely inter-dose withdrawal in 2017. After two voluntary hospitalizations and dozens of ECT treatments in 2018 and 2019, I wasn’t healing. When COVID hit and George Floyd was murdered, I decided I needed to try getting off psychiatric medications to discover who I really am. I too-quickly tapered, without any psychiatric care, all of my meds over about six months.

    It’s been 28 months since I’ve been medication-free. I’m now dealing with what I have self-diagnosed to be BIND ( Benzodiazepine Induced Neurological Dysfunction), (inner) akathesia, and possibly damage from bilateral ECT prescribed by a psychiatrist in a public psych hospital in Colorado who was subsequently fired and unceremoniously walked out of the hospital for some undisclosed wrongdoing or impropriety. I haven’t slept more than 2-3 hours at a stretch in three and a half years, since the ECT. I have excruciating nerve pain, burning nervous system and burning skin and back pain, foggy brain, disequilibrium, and intense, persistent sensations of being plugged into an electrical socket. Sometimes, usually when I try to sleep, it feels as if I have a nuclear reactor inside me.

    The medical system has been nearly useless in helping me figure out why I’m experiencing my hellish symptoms, including neurologists, orthopedists, psychiatric nurse practitioners, psychiatrists, and pain specialists. (To complicate matters, my own father is a retired psychiatrist). I have had numerous periods of suicidal ideation during the past two years or so, as the BIND and akathesia progressed. I’ve been working with a fabulous acupuncturist, somatic therapist, massage therapist, and trauma therapist for the past 18 months. They have been a life-line for me as I work towards healing my body and mind. I now have a supportive nurse practitioner as my PCP, who has no experience treating BIND or akathesia, but says she has an open mind regarding my condition and says that she believes me when I tell her I am suffering from an iatrogenic injury, something few doctors (including those I encountered during 12 ER visits that I made due to undiagnosed excruciating pain), have had any interest in discussing. The degree of (perhaps mostly ignorant) gaslighting I’ve encountered from the medical system during this last three years has been mind boggling.

    I have a long way to go towards healing and living a life without extreme pain and discomfort, but I believe the hard part is mostly over. Although the akathesia is actually getting worse for now, I am beginning to understand the causes (psychiatric medications, iatrogenic injury). Like the author, I am determined to heal. And when I heal, I am determined to somehow help others, as the author is doing, to understand the harm being perpetrated on perhaps millions of people being prescribed medications that may seem to help somewhat in the short term, but that cause devastating hard over the longer term.

    Thank you for your article. I look forward to reading your next pieces. I’d be open to corresponding with you directly about our mutual journeys.

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    • Our stories sound similar, and that is always a heartbreaking thing. I’m so sorry you’re experiencing these consequences of medical harm. I truly hope my follow-up pieces provide you with a new understanding and new ways to recover. My husband, Kent, wrote an article a couple of weeks ago and has one coming out soon. I’d encourage you to read him as well. His support and knowledge of brain injuries have been crucial to my own recovery. Many thanks, be well. – JA

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  9. ” With everything to live for, I wanted to die.” Really eloquent, direct and illustrative of what many of us feel, and imparts the important message that this is real and inflicted on us, not a result of our own psychological weakness or infirmity.

    So well written and descriptive of what many of us are really going through.

    This is very interesting to me for a few reasons… first, I am writing a piece right now, that I hope MiA accepts, on my own recovery from inner aka and the other “mysterious” symptoms of my own TBI from TMS, and what I suspect is previous use of psychiatric drugs.

    It has been over a month now, but I have not had a recurrence of inner aka after a prolonged water fast, and i was diagnosed with CFS as well and that has been in remission as well, along with several other things.

    It seems to me that there are many mechanisms at play here physiologically. I thought that the fast may fix those things, and surprisingly it was a massive help – I was skeptical. The remaining component that seemed to emerge after the fast seemed to be psychological, certain things seemed to crop back up and persist based on my thinking patterns, that had resolved during the fast. It led me to look into limbic retraining and neuroplasticity even more thoroughly and it seems to be the remaining piece of the puzzle, which sounds very similar to some of the things you are beginning to write about here – our thought processes can actually keep us in a chronic inflamed state that will disallow healing, which we often mistake and the medical model mistakes as an inability to heal.

    I find it rather humorous, although I suspected it would come down to – the solutions we have been seeking are incompatible with standard medical care and in fact in its own arrogance they disqualify healing from these things altogether because it does not match their MO. Science has no arrogance but doctors and administrators of medicine have certainly added it to what they practice, which then gets disseminated to virtually every person in the modern world, at our detriment.

    Thank you for writing this, I am really looking forward to seeing what you have next.

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    • It sounds like you’re on the right track to recovery. I’m so sorry you’ve struggled as well. Agreed, it’s much more than physiological, but like most medical paradigms, the human body has been divvied up into parts and parcels, which ironically leads to more harm. You can’t treat a single part of a system without consideration for the whole system. I’m not sure why I even have to say it out loud. Thanks for reading and I wish you way more than luck. – JA

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  10. Our stories are so similar— All of our stories.
    Yet…When I tell people I meet in the real world—especially mental health professionals and doctors of all kinds—I am told I am a fluke. No one has ever heard of such things. I am either written off as just crazy, “off her meds” or pitied and told they just don’t k ow how to help. OR the non western medical people claim they can help if I can come up with lots and lots of money. Well like most of us psych survivors, the traditional mental heath system has made sure I don’t have any money nor get any money. So where does that leave me and those like me?
    We are all in this fight together—poor and not so poor. But once again, out of all of us psych survivors if any of the psych survivors are more likely to be healed it will be the ones with at least some financial resources.
    I look forward to your future articles with cautious hope for those of us in what has been coined, “forced poverty”. With fervent wishes that ALL of us heal!!

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    • Wait–you’re a “Lucy” too? How can there be more than one? I think it’s safe to say we are not the exception, we’re the rule. Others have just been extremely lucky. And agreed, socioeconomics plays a horrible, unfair, and sinister role in all this. It’s time to overhaul the system and then some. Thanks for reading and sharing. – JA

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  11. Though, mercifully, I escaped (chronic but not acute, akathisia and dyskinesia, but not “anhedonia” and dementia, both of which I believe are still improving, 14 years on, thanks to the love and support of my wife), as far as I know, I found this all absolutely captivating and riveting reading, from the very beginning, thank you.

    My personal interpretation is that Prof. Howard Schubiner, in every one of his many YouTube videos I have seen, offers a scientific explanation for you loving faith healers of all religions and of none (that other JC, and BG most definitely included) work and have always worked to produce what until now have often seemed to many like pure miracles.

    And I think J.A. has offered us much the same in her story.

    It seems to me at least that, along with her own incredible courage, resilience and determination, and very much inspiring that, too, the loving support and encouragement of a most extraordinary husband, son and grand-daughter (or grand-daughter-to-be?) gave J. A. that which she needed to make that most ginormous leap of faith – of faith in herself and in her innate ability to find whatever it might take and to heal herself from the “incurable,” for the sakes of others.

    I believe Bruno Groening, https://www.youtube.com/watch?v=ZNlXuclHhVc , has been quoted as saying that everything can be healed although not everything can be explained…but I believe that, in no small measure thanks to testimonies as gloriously shared as J. A’s, above, this may all be rapidly changing now.

    There are so many ways of saying it.

    What would you attempt to do….if you KNEW you couldn’t fail?

    Think you can, think you can’t: either way, you’re right.

    All things are possible to those who believe.

    God loves a tryer.

    Etc. etc. etc.

    But there may be infinitely more ways in which each of us can heal, and help others to?

    I hope and I pray that Julie Christine (above) and others may also be similarly inspired, and also heal, and fast, now.

    Heartfelt thanks for an unforgettable essay, and so much more, to J.A., to her family and and to MIA.

    Tom.

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