Akathisia: Historical Perspective for Healing

In 2018, I wrote an article for Mad in America called "The Agonizing Nightmare of Drug-Induced Akathisia." It details the immediate aftermath of my life after withdrawing from the atypical antipsychotic (AAP) Latuda in 2016. The article, accompanied by a short YouTube film I made on the horrors of the drug effect, akathisia, describes my interactions with the medical system—a community I’d always trusted with my life and health, until I developed severe drug-induced effects after years of being poly-drugged by psychiatry.

I had accepted my doctors’ misdiagnosis of bipolar disorder because they were medical professionals. I hadn't questioned their insistence that I had to be medicated for life because they (along with televised drug ads depicting cartoon neurotransmitters) told a story of "chemical imbalance," a story that has since been disavowed by medical science. Then when the medications began having life-threatening consequences for me, the medical establishment rejected my experience, refusing to see how their medications had negatively impacted my life. The anguish of akathisia is real, and at the time I wrote the article four years ago, I was devoid of hope.

Recently, my husband, Kent, wrote an article detailing our experience with the 2016 Latuda withdrawal. Soon after his piece was published, I wrote my first article since 2018, again for this site, called, "Waking from the Nightmare: Is Recovery from Akathisia Possible?" In that piece, I give an overview of what has happened since 2018, including my daily battle with acute akathisia, other tardive drug effects, and additional health challenges that, at the time, didn't seem related to the drug harm caused by psychiatric medications. Now, I know differently.

My last piece speaks of hope, but hope is often challenging to convey to people suffering from the physical and psychological trauma of drug harm, so I’d like to talk about tightropes and balance. Like me, you’ve probably never walked a tightrope, but you can still relate to the metaphor of walking on a narrow or unpredictable surface. This is akin to how I feel whenever I write about, or discuss, recovery from traumatic chemical brain injury (TCBI) caused by psychiatric medications. I feel as though I’m walking a tightrope because there are those whose injuries are fresh; others whose injuries are older but still carrying hard, painful scar tissue that impedes their lives, and still others who are bleeding out. And of course, there are those readers who are caring for the injured—whether they are support people, family members, physicians, or mental health professionals. And so, like any amateur tightrope walker, I work to strike the right balance between hope and practicality, a sometimes inelegant and dynamic process that requires constant adjustment, motion, and recalibration—much like the process of recovery itself.

Over the past 18 months, I have been actively recovering my health. However, my search for relief and recovery began the moment I was diagnosed with drug-induced akathisia in 2016. I took many wrong turns, had numerous setbacks, but I also began moving forward incrementally with each new revelation about how I had been injured. Since the beginning of last year, I have only experienced one day of debilitating akathisia. However, when I’ve tried to share how I believe I’ve gotten here with a few people who seemed desperate for guidance, my experience has been met with disbelief, dismissal, and/or sometimes anger, oddly reminiscent of how I was treated by the medical community when my narrative diverged from theirs.

And so, as I recount my personal experiences with prescribed (and other iatrogenic) harm, along with my experience of finding a promising road to recovery, my goal is to be as accurate and thorough as possible. Because we are each in different stages of recovery, the hope is that wherever you are in the process, you’ll find something of value, whether you’re currently on medications, withdrawing, a support person, a medical or mental health provider, or someone suffering with chronic or acute injuries. Like multiple switchbacks on a mountain trail, this process has been tedious and difficult for me, so I ask for patience as I share my story in ways that might seem nonlinear (though this, too, mirrors the road to recovery). How things unfolded for me is, I believe, just as important as where I am now, which is not fully recovered but recovering.

In my last article that asked the important question, "Is recovery from akathisia and other drug harm possible?" I’d said that my story wasn't "unique or particularly interesting," which is in some ways true. I’ve read too many horror stories to think mine is in any way exceptional.

Yet, as I began to formulate my upcoming articles to accurately reflect my process of recovery, I realized that to explain how I got here, I had to clarify where I’d been and how long I’d been there because "…working backward from the symptoms gives vital clues to which part of the brain, which system, has been injured."

When I first took Zoloft in 1996, I couldn't hold still. I began perspiring profusely as my mouth and eyes dried up. But it gave me an odd, buzzing energy, like I’d had too much caffeine, which was a welcome change from the exhaustion I felt from being a single mother, suffering traumatic brain injury (TBI)-induced depression, during a brutal divorce. I was constantly on edge, reactive, like a live wire. I worked out two, sometimes three times a day to release the agitation. I could barely eat or sleep. My heart pounded through my chest and one leg was always joggling.

After a few months of these awful sensations, I stopped the SSRI abruptly and plunged into the darkest place I’d ever been. With a violent ex-husband stalking me and two small children to protect, I was terrified of what was happening to me emotionally. I went into a sliding-scale mental health clinic, where I was given a "quiz" to determine if I had a serious mental illness (SMI). Unsurprisingly, I was diagnosed with the trendy "bipolar II disorder." I was prescribed a neuroleptic, a "mood stabilizer," and two other SSRIs, and told I’d need medication for life.

Soon after starting this cocktail, I became lethargic and could no longer work out—or work, for that matter. I lost my full-time job and flunked out of college. My cognitive function was so impaired, I couldn't follow verbal or written instructions. I began to gain weight as I parented my daughters from a mostly horizontal position, never feeling awake or rested, in a constant state of crippling anxiety. I’d been forced to share custody with my ex-husband. My daughters were living with him two weeks out of the month and were being emotionally and physically abused. I had no recourse because I had no resources or support. When I lost my job, I also lost health insurance and was forced to go cold turkey off all four medications at once. I almost didn't survive. The constant terror and panic I felt matched my life, so it felt reasonable, familiar. The suicidality did not.

I remarried in 1999 and soon after, I knew I had to get custody of my girls. Nothing I did could offset their mistreatment at the hands of their father. During the custody battle, my diagnosis was used against me, as was my lack of medication compliance. My attorney said if I wasn't medicated, I could lose custody to the violent man we were trying to escape. After a year-long legal ordeal, I was awarded custody. In 2002, I gave birth to my son.

By 2004, I was taking care of three children, both my aging parents, and striving to make it as a writer while trying to hold my troubled marriage together. To manage all this, I was also in therapy. That year, I had a seizure, likely due to the brain injury and poly-drugging years before.

Not knowing it was a seizure, I called my therapist, who directed me to a psychiatrist who was considered an "expert" on bipolar disorder, which meant, I found out much later, he was taking exorbitant amounts of money from pharmaceutical companies to medicate and "educate" patients. He put me on the atypical antipsychotic Abilify. When I called him to tell him I felt like "my bones were trying to escape my skin," because restlessness didn't even come close, he lowered the dose and added benzodiazepines, though the benzo dose kept climbing year after year as akathisia raged inside me. I told him the medications were too fatiguing—I couldn't exercise or function–so he added a couple of SSRIs and amphetamines to help with the fatigue and weight gain. I lost both of my parents in the same year my second marriage ended.

In 2008, I married my third and current husband, Kent. By 2009, I’d gained over 70 lbs. and couldn't lose it. Despite my lifelong commitment to physical exercise and healthy living, my primary care physician diagnosed me with high blood pressure, high triglycerides, and "prediabetes." Chronic akathisia had been my "normal" since Zoloft, but in 2011, I missed a dose of the SNRI, Pristiq, and found myself in the grips of pure terror that felt like the end of my sanity. I never fully recovered, and my daily akathisia became acute. That entire year was devoted to withdrawal from Pristiq as my physical and mental health continued to spiral.

By then, I’d been transferred to a caring and conservative doctor who was troubled by my multi-medication regime. We began weaning me from the SSRIs, with withdrawal symptoms barely registering because, again, that had been my "normal."

Throughout these years, I had short windows of functionality, fits and starts that eventually crashed into the loss of all my functionality. These small windows lasted just a few hours in the morning. I made the most of them by writing and creating, but they continued to shrink. Early in 2015, I suffered a recurrence of the Epstein-Barr virus followed by a serious infection that hospitalized me. That was the beginning of the end—the winding down of everything, including my career, which had only just started to gain traction. Soon, I stopped beginning projects I knew I couldn't finish. I stopped all public appearances. I was a shut-in, unable to run simple errands, sustain friendships or other relationships, or manage even the mildest physical, psychological, or emotional stressors.

In 2016, I was diagnosed with drug-induced akathisia, and withdrawn from the AAP, Latuda. My diagnosis of "bipolar" was replaced with "TBI." By then, I’d been completely hobbled by my deteriorating mental and physical health. During withdrawal I had migraines, fevers, dizziness, nausea, and uncontrollable movements in my face, body, and mouth—I struggled to speak and walk five months after the final dose and needed physical therapy to re-learn how to walk. I lost the ability to play the piano and type. I could feel my fingers and legs, but it was as if they’d stopped listening to me when I tried to move them.

My cognition had declined, and my emotional states were all over the map, except in the direction of "OK." I was still in talk therapy learning things that might have helped me had I not been in so much physiological and emotional anguish.

Tremors impacted my motor functioning and random parts of my body would spasm and seize up, like my larynx, diaphragm, and bladder, sometimes lasting for hours. My neck was painfully immobile for three years. Without cause or warning, my joints became tender, swollen, and red. My jaw muscles seized, then my mouth uncontrollably popped open. When my diaphragm seized up, I couldn't take a breath. My throat was so tight, I could barely swallow food that wasn't cut into toddler-sized bits. I choked on liquids. Throughout the day and night, my larger muscles seized up, hard as steel, like a prolonged Charley horse. I would awaken in the night screaming, back arching, legs spasming. Rubbing the seized muscles caused me to vomit. On the rare occasions I was unconscious, my husband could feel my muscles vibrating or moving like waves on the shore, under my skin.

Water burned, dried out my throat, and upset my stomach, causing it to bloat. In fact, everything I ate blew my stomach up (and out). I tried restricting my diet, but the more I restricted it, the more food sensitivities I developed, and I often developed hives all over my body for no apparent reason. Every day, I had upper and lower GI dysfunction, chronic constipation, acute akathisia, and cell-crushing fatigue along with pain throughout my body. By this time, I was insulin-resistant as well. Whenever I lay down, my heart went into atrial fibrillation, but when I stood up, I felt faint and exhausted as my blood pressure plummeted. I experienced drenching night sweats and other types of temperature dysregulation that added to my sleep troubles.

As I continued to taper from medications, I would awaken with a sensation like a hot poker being held to my legs, nipples, my back, stomach, and arms. A disembodied shriek set up shop in my left ear, leaving me off-balance and exhausted, so I was fitted for a hearing aid to try and amplify anything other than the constant screech coming from my mind.

When I tried to get back on the "workout horse," a day later, my fatigue was severe, my body movements uncontrolled, and my muscles felt "nauseated," as if they had the flu. I stopped trying to work out because I couldn't risk any more loss. Seizures became frequent. Making meals, shopping, or cleaning the house was too much. I removed myself from public life and could no longer tolerate social media of any kind.

My pain threshold increased and as doctors stuck needles in me, I marveled at how I couldn't feel it. To overwhelm the pain of akathisia, I got tattooed. I fell asleep as the needles bore into my flesh, but there were days the artist couldn't work because of my jumping, twitching muscles.

In the years following Latuda withdrawal, I could no longer be intimate with my husband. When I wasn't numb and unresponsive, I was so over-sensitized, I couldn't tolerate touch of any kind. My husband learned to walk on eggshells and had to shut himself off from me, often so he wouldn't get pulled down into the abyss.

Though I’d become inured to pain, I conversely became hypersensitive to any stimuli. The blinds were always drawn because sunlight hurt my entire body. A loud noise could reduce me to sobs. If one of my cats jumped on me, the pain I felt was excruciating and I took it personally—in fact, I took everything personally. I couldn't tolerate the smell of chemicals, cleaners, or perfumes. Bedtime was a nightmare—indistinguishable from my daytime horror, with visual and other sensory disturbances that led me to believe I’d truly lost my mind. I often lay awake, sobbing through the night, praying for death.

We’d sought help from the medical community at first but quickly learned that all they had to offer were more damaging pills, mental illness diagnoses, ignorance, and contempt. My despondency was only matched by an all-consuming fury. I lost my ability to connect with other people except through pain and rage. My creativity had no outlet because art created from despair and pain is nothing more than chaos: a violent, unintelligible scream into the dark.

There were days when my life seemed unreal. I couldn't access any feelings for the people I loved. I was unable to recognize myself within my own body, mind, and world.

My marriage was brittle with conflict. Knowing my conditions were tearing Kent apart, I felt both helpless and bitter; everything seemed threatened and threatening. During this time, my son began to self-medicate. We almost lost him to overdose twice, and I knew the fault was mine.

I lost all but one or two friends. My extended family grew distant, then silent. Our local community wrote me off and moved on, not fully knowing what was wrong. With no simple concept for them to grasp like "cancer," they knew enough to know they didn't want any more information because it shook the foundations of their own sense of safety. This is what happens to everyone who suffers from unsanctioned illness—the isolation closes in.

I couldn't stand being out in public or with other people; I couldn't stand being alone. Simply put, I felt emotionally skinless; the mildest warm breath from the world felt unbearable.

I had been battling suicidality since 1997, but by 2019, with only one child left at home, it was winning. I could almost delude myself into believing my family would be OK without me because I knew Kent would be there. Along with a relentless anxious terror, I felt ashamed, desperate, and hopeless—feelings that often accompany the suicidality of akathisia. I began giving away precious heirlooms to my children and granddaughter. When my son wasn't home, I screamed into the bowels of my empty house, begging for help that never came.

I was emotionally absent and incapable of interacting with my struggling grown children, who couldn't understand why I was spiraling because I couldn't bring myself to admit to them how badly I was flailing. I attributed all of it—the mental, physical, cognitive, and emotional decline—to my own personal failings as a human being.

At age 50, I was shutting down. A lifetime of trying to take care of my body and mind had been undone in just a few short years because it was clear from every angle that I was falling apart. The pandemic was almost a relief, making my small, suffocating life seem more "normal" because other people were stuck at home, isolated and fearful, too.

If you’ve taken psychiatric medications for any length of time, some, part, or all of the above might resonate. Out of curiosity, I decided to look up all the medications I’d taken through the years, often all at once: SSRIs, SNRIs, AAPs (neuroleptics), anticonvulsants, amphetamines, and benzodiazepines. I was stunned. It would take less time to list the drugs (in each class) I had not taken.

That was my life for nearly a quarter of a century. Today, I’m still tapering from medications, but I am better, which is how I know recovery is possible. But that didn't "just happen." Recovering from this kind of damage for this length of time has never been a passive process for me. And while recovery began with a mindset, understanding the systems that were impacted by medications was an essential piece of the puzzle. Also noteworthy is that I didn't get here alone; I’ve needed help along the way.

Note that I only mentioned four medications by name, and I didn't list any specific diagnoses except akathisia. That was deliberate. It's too easy to surrender to a label—we often underestimate their power. In some cases, an official diagnosis heralds the end of curiosity for both doctor and patient, which can undermine efforts to recover from drug harm.

The pathophysiology of akathisia and other psychotropic drug harm is unknown. Going forward, I won't be focusing on specific medications or diagnoses, but on the seemingly disparate symptoms that ravaged my entire system, dysfunctions that originated from psychiatric medications.

In my next article, I’ll be addressing how I came to understand the brain and nervous system from a recovery perspective. Understanding the mechanics behind the symptoms was my next step toward healing.

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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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