My husband, Kent, knew he couldn’t leave me alone. I was unsafe and suicidal. In my conscious mind, I knew I was unsafe because I was going through withdrawal from a neuroleptic (the ‘atypical antipsychotic’ Latuda), but that didn’t matter to me, that knowledge.
I had read somewhere that sometimes nicotine quelled the terror of akathisia, so I sat on the back porch smoking the mildest cigarette brand I could find because smoking was not a habit I enjoyed. I would finish half, then stub it out. The first few drags took the edge off. The edge came back within minutes. Light, inhale, stub, repeat.
My body shook and trembled as I sat in the patio chair next to the table with the makeshift ashtray. I rocked back and forth as my mind scoured the entire field of my experience for a reference point, something to which I could anchor my feelings of terror and panic.
Kent sat with me as sounds from our suburban neighborhood floated through my ears ironically, cruelly, as if to say, “This is what normal people do.” On some level, I knew I was outside of “normalcy” forever. My neuropsychologist had told me, based on seeing me weekly for over a year, that he didn’t think I had bipolar disorder, but I didn’t fully believe him, and I didn’t want to. I’d spent years tailoring my beliefs, behaviors, and self-concept to reflect the socially-sanctioned diagnosis. What was happening to me was not socially sanctioned.
I don’t recall if I said it aloud or if it was just a thought in my mind, but I remember this thought clearly and distinctly coming into my awareness: what if I do have bipolar disorder, and this is what bipolar disorder is without medications? The “this” I referred to was, of course, acute psychiatric drug withdrawal. I even knew it at the time, but in those moments, my mind was unable to hold to anything rational.
What happened next would be a reference point for me forever. I was sitting in the patio chair, and I had the sensation of falling from a great height, though the word “sensation” doesn’t do it justice. I began screaming, my body contorting and flailing as I grabbed the empty air around me. Clawing at the sky, I remember screaming for help, begging God to help me. God help me, God help me, over and over.
The ambient sounds of suburbia never even paused.
* * *
With the benefit of hindsight, it’s clear to me what was happening during this event. Without the giant, wet blanket of neuroleptics dampening my nervous system, wildfires that would have otherwise been innocuous were now burning out of control. However—and ironically—the severity and scope of the ensuing fires were a direct result of neuroleptics. Like a drought-ravaged landscape with nothing but dry kindling, once the drugs were removed, lightning storms that had been held at bay for years were suddenly touching ground, creating uncontrolled burns that would have never happened had I not been prescribed neuroleptics and other psychiatric drugs.
No one, not my doctor nor my therapist, prepared me for the many ways my system could express the damage it had suffered. When we aren’t prepared for the alarming physical and psychological devastation that accompanies drug withdrawal, it isn’t something we take in stride. It’s a frighteningly foreign process that feels anchored in the mind and soul rather than in the brain, body, and nervous system. Even when we’re told otherwise, though, it’s difficult to remain cognizant of it when in the throes of it.
Why did I feel, specifically, as though I were falling? Not one MD or therapist has been able to answer that question for me. Their responses were vague and ran along the lines of the wildfire analogy: the drugs weren’t there to calm things down, so things went haywire. But I’d like to posit a more plausible and specific reason.
Most of us don’t remember the feeling of falling while we’re perfectly safe and supported because when we experienced this paradoxical sensation, we were newborns, and our brains weren’t fully developed.
Soon after we’re born, we are tested for the Moro reflex or more commonly, the “startle reflex” (though they aren’t exactly the same since the latter stays with us throughout our lives). Newborns are tested for the Moro reflex to ensure they are developing healthy neurological responses to specific stimuli.
If you’ve never witnessed a Moro test, it looks something like this: a medical provider lays an infant on their back, lifts their arms gently, then allows their arms to suddenly drop—it’s the suddenness that provokes the reaction. The normal response in an infant is to flail out their arms and legs in surprise, and take in a sharp breath, followed by distressed crying.
What the provider did was give the child a sensation that they were falling as if from a great height. Neurologically, a functioning Moro reflex is an important part of developing numerous brain functions, including proprioception, which is our ability to sense where we are spatially. Most importantly, the Moro reflex reveals the first sympathetic fight-or-flight response. When infants respond appropriately to this stimulus, it means their brain stem, among other primitive structures, is developing normally.
After this test, the infant is quickly swaddled and comforted, but on my porch that day, there was no way to comfort me. Had Kent or anyone else tried to “swaddle” or restrain me in any way, I would have reacted with total panic because I am not an infant. I’ve had a lifetime of brain development that has created a complex, living organism. It is also an interdependent system that can only experience what it’s experienced. So, I experienced the sensation of falling because that sensation is a neuroperception hardwired into all of us from birth. It’s reasonable to conclude, then, that whatever brain development I’d experienced after I was three or four months old had been impacted, possibly damaged, by neuroleptics.
This theory was validated almost three years later.
In 2019, I went in to see a functional traumatic brain injury specialist. After filling out a lengthy symptoms questionnaire, he conducted specific neural testing to see what parts of my brain had been damaged. To be clear, these tests were functional, they were not brain scans. While brain scans can sometimes show pathology, damage, or deficiencies, there are no handy labels that neatly ascribe identifiable abnormalities on a scan to specific, complex, universal behaviors, or, as Joanna Moncrieff states in her book, Bitterest Pills: The Troubling Story of Antipsychotic Drugs, “…it is rarely possible to find the origin of a complex subjective state in a single biochemical aberration.”
I recall the functional neural testing as being exhaustive and exhausting. The TBI specialist assessed my autonomic reflexes. The majority of them were either absent, slowed, or hyperactive. All of them were in dysfunction, which meant that the damage was widespread, but pronounced in my brain stem and basal ganglia.
I realized that just like the futility of putting Humpty Dumpty back together again, there was no way to rewind time to undo the damage. Adding another psychotropic, though standard operating procedure in psychiatry, would be like perching the fractured Mr. Dumpty on a different wall in the hopes that a second fall might put things right.
What I learned that day was critical to understanding the damage of TCBI (traumatic chemical brain injury): there were no medications, supplements, or cognitive behavioral therapies that could directly heal what had been injured. The only way for us to address the damage was through indirect means.
Remember, autonomic systems do not respond to our conscious will and they do not speak human. If someone had tried to reassure me that I wasn’t falling that day on the porch, it would have been futile—I wouldn’t have been able to hear or respond to that because my brain was being flooded by intense neuroperceptions.
So, was the sensation of falling a presentation of akathisia, or was the falling sensation a presentation of the damage my nervous system had suffered? The latter seems most reasonable because there are those who have akathisia who have never experienced a falling sensation. A more inclusive theory is that both akathisia and the falling sensation are presentations of similar brain and nervous system damage caused by ingested chemicals.
When it comes to akathisia, there is no thinking, talking, or reasoning your way out of it. What was most distressing, too, was that any pharmacological band-aid I had tried up to that point—even if it gave temporary relief for a short time—was eventually consumed by akathisia, which then seemed to return with even more determination. But that doesn’t mean that akathisia was inevitable or unstoppable, it meant that I clearly couldn’t address akathisia head-on. This became obvious because I’d already tried to address it directly and nothing worked or stuck.
A few days after the neuro-testing, the neuro-rehab began. The TBI specialist, we’ll call him Dr. J, began our visit by introducing me to movements that I had to do at home and at first, they seemed pointless. He asked me to lie supine on the floor, knees bent up slightly, and then, using my whole body, slowly rolling onto my stomach, allowing my body to “fall” naturally onto its side, then into a prone position. From my stomach, I was to roll slowly again, allowing gravity to roll my body to the face-up position once more.
Through the tangle of terror and chaos in my mind, I couldn’t imagine how this simple, purposeful movement could have any impact on akathisia—which was where my focus was, constantly, incessantly. I needed a way out of akathisia. Nothing else mattered and I might have said as much.
Dr. J patiently explained that I needed to teach my nervous system, via different types of neuromuscular reeducation, that it was safe to move again. The inherent wisdom in this made a deep impression.
This introduction to the underlying principles of neurorehabilitation began an over-two-year road of recovery with Dr. J. I could not directly communicate with my autonomic nervous system, but my muscles could act as intermediaries.
It only occurred to me much later that infants begin to roll at between three and four months old, often in conjunction with the gradual loss of the Moro reflex.
July 2016, Continued
In the back of my mind there was an awareness that the neighbors might hear my screams and call the police because I was screaming, as clichéd as it sounds, ‘bloody murder.’ I recall being mildly worried I’d be hospitalized, too, but those thoughts were fleeting because the more immediate concern was that I felt like I was falling while I sat in a chair, and I knew I wasn’t falling because I was sitting in a chair.
The expression on Kent’s face was drawn and stricken as he tried to bundle me into his arms, a natural response to someone who is clawing at the air and begging God for help at the top of her lungs. We have a door that leads directly from our bedroom to the porch. He was finally able to cajole me back into the house. My limbs were dyskinetic, I was shaking, yet I moved as if walking through wet cement. In my body and mind, moving felt like a life threat—as if I was being dragged out in front of a firing squad or into the cage of a predator.
Once inside, I crawled onto the bed sobbing, terror-stricken, still begging incoherently for help. I could hear Kent’s footsteps as they struck the wood floors, moving from the kitchen to the bathroom. From the other room, I heard his voice speaking in a low, calm tone.
“Uh, yes, I need to leave a message for the doctor. Yes, my wife is… she’s withdrawing from a medication and she’s not doing well… she’s… she can’t… okay, thank you.”
My body curled into a tight ball as my mind played a horror show of things I can’t recount here. I can only say that they were personalized, waking nightmares, specifically tailored to my worst imaginable fears. When the internal movie reached its bloodiest, most horrific conclusion, I’d start screaming again.
It came in waves but there were no windows. I would stop screaming to try to get ahold of myself, try to think, or reason my way out. Memories of all the cognitive and behavioral skills I’d learned in therapy flashed through my mind—also ironically—as if to say, “Oh, oh no… we’re way past that,” and then I’d get kicked in the chest and gut with terror again. Scream, beg, wail, repeat.
Thankfully, I didn’t have the sensation of falling anymore, just the terror of it. I was dyskinetic and writhing in agony on the bed despite my limbs being glued to my torso.
* * *
The final element of the Moro test occurs immediately after the infant reacts to the sensation of falling. After their limbs flail outward, they immediately and reflexively pull their arms and legs into their torsos.
We all know what it means when someone talks about “being in a fetal position.” When an adult describes themselves or another person this way, sometimes it’s figurative, sometimes it isn’t. If an adult is literally in the fetal position, it indicates that they’ve regressed both emotionally and physically into this protective position because they are experiencing a neuroperception of a life threat. This primitive reaction is also hardwired into us.
Of course, loud noises and other sensory stimulation can also elicit a startle reflex. However, when these vital areas of our nervous system are damaged, our systems become hypersensitized and any resilience we have developed since infancy can be compromised to varying degrees.
I found this short video on a National Geographic site that demonstrates in real time how completely automatic these reflexes are. Even though the individual in the video knows her reflexes are being tested, and even though there’s an extrinsic incentive to suppress them, she has no control over them. Understanding how damage in these systems can impact someone’s ability to regulate their physical and emotional reactions is especially essential for those caring for people with this type of injury.
Dr. J is not an MD, and I think that’s relevant. Based on what I know of the rigors of medical training, it seems that, like with military service, providers-in-training have their humanity stripped from them somewhere along the line, a kind of emotional prophylaxis to keep them from developing compassion fatigue or getting too attached to patients. Some grow it back, many don’t. Further, I’ve experienced the “white wall” firsthand as I’ve seen providers hedge and contort to avoid speaking ill of a fellow prescriber, which can immediately create an adversarial quality in a clinical setting.
I went in to see Dr. J after seeing him on a local morning show talking about how to heal from TBI. At the time, I hadn’t quite married the two concepts of drug harm and TCBI, but after looking at his website, I made the initial appointment. His specialty was ‘functional neurology,’ and having come from a family of medical professionals, I was wary, and I told him so. Plus, the word “functional” immediately had me on edge.
“You know,” I said, “there are medical providers in my family who would tell me that chiropractors were only a step above veterinarians.”
He laughed and said, “Wow, I’m surprised I rate above a vet! That’s good news!”
Dr. J took time in his office to reassure me that my experiences were valid, and that the level of dysfunction in my biological systems alone told a story that in no way could be misconstrued as “mental” or “all in my head.” I remember breaking down and crying and for the first time, not being worried about how my response would be pathologized or what sort of “diagnosis” would be slapped on my chart. Dr. J understood how human beings worked.
In the following weeks, I was to practice the rolling-over technique at home and practice slowly, gently, lifting my head from the prone position for a few moments when I did it. After doing these movements daily, I was to begin practicing scooting, then crawling along the floor, then up the stairs. I was also to do an exercise called clamshells to strengthen my lower stabilizer muscles. Six minutes of clamshells a day for one hundred days.
I was escorted to another room with several reclining chairs in it. One chair was elevated like a bar stool, and I was asked to sit there. Dr. J’s assistant readied a two-pronged device that looked like a dual meat thermometer. In reality, it was a tongue stimulator to re-sensitize my then-absent gag reflex. I remember thinking that my gag reflex did not feel like the most pressing matter in my life. In hindsight, though, it now makes sense.
The gag reflex is another automatic response that is hypersensitized through the early months of infancy. As an infant’s digestive tract is still developing, the gag reflex assures that an infant doesn’t aspirate their (liquid) stomach contents. At around four months of age, parents are encouraged to introduce very soft foods such as rice cereal thinned with breast milk or formula, and pureed fruits to help the child develop the skills of swallowing solid food.
In order to progress to this stage, however, an infant must be able to root, suck/suckle, and swallow. These reflexes are present within moments of birth. I remember staring into the faces of my newborns, watching every movement, marveling, laughing at the silly faces they made, as if they were trying to amuse me. But everything infants do has a purpose. I recall how, when they were hungry or distressed, they would suck at their own lips, and if I touched a cheek, they would respond by turning in that direction (rooting).
Infants also engage in another automatic reflex—their tongues involuntarily protrude from their mouths. All of these automatic reflexes except the gag reflex start to diminish within the first six months of life.
Tardive dyskinesia (TD) is a neurological movement disorder caused by neuroleptics that is characterized by uncontrollable, abnormal, and repetitive movements of the face and mouth, but in severe cases, it can also affect the torso and limbs as it did with me. One common characteristic of TD is the tongue reflexively and involuntarily protruding from the sufferer’s mouth.
When my jaw wasn’t seized or popping open, it would often go into chewing motions when I wasn’t eating. Apparently, this is called “rabbit syndrome.” Hilariously, this PubMed article and NIH article go to extraordinary lengths to delineate the differences between rabbit syndrome and TD, stating that while they don’t know the neuropathologies of either one (“we don’t know what causes it”) both are caused by neuroleptic use (“but we do”). But they’re different, remember—one is involuntary chewing movement, the other is involuntary mouth movement and tongue protrusion. See? Different.
Both TD and rabbit syndrome are reflexive and involuntary precisely in the way an infant’s tongue protrusions and rooting mechanisms are involuntary. Are the neurological mechanisms the same? I don’t know. The only difference from what I can see is that infants have to develop that control, whereas adults have already developed that control—unless of course their brains were damaged by neurotoxins.
This is one of the reasons I try to avoid specific diagnostic labels. They are simply socially agreed-upon constructs over which we, the public, have no control, especially in healthcare. Labels are double-edged swords; they can have value when determining a course of treatment for physical pathologies, but they can also be indestructible lenses through which we are seen forever by healthcare providers.
That said, spending any length of time on NIH’s site is an exercise in absurdity, although it is a fascinating example of the biases that exist in medicine. In their attempts to catalog and define nervous-system-injury-by-neuroleptic, their studies reveal feeble attempts to maintain bias as they create discrete conditions out of thin air, ones that have an undeniable common denominator: long-term use of neuroleptics.
One thing to mention here is that I went to see Dr. J specifically for my neck, which had been immobile since September of 2016. Three years, painfully seized in an uncontrolled contraction, specifically the sternocleidomastoid muscles (SCM) in the front of my neck, which are difficult to contract without moving the face and head, or absent dedicated effort. My SCM muscles were like steel.
An interesting correlation between neurological dysfunctions that are characterized by pronounced and hypersensitive startle responses in adults is muscle seizures, specifically in the neck region. Again, these are physiological responses that are automatic and out of conscious control. So, if we look at the purpose of automatic, protective reflexes in the context of psychotropic drug withdrawal, it seems reasonable to conclude that drugs that impact these areas will create dysfunction in these areas. Drugs designed to quench all fire, even fires that are helpful and necessary, destroy the natural rhythms of the forest. Sometimes the ensuing inferno alters it forever.
Part of my neural testing included testing for nystagmus, the involuntary and rapid movement of the eyes back and forth, or up and down, something commonly found in TBI. Dr. J recorded the test, and I actually got to see my eyes visibly wobbling on a large screen. I jokingly asked him if that was why I couldn’t watch Guy Ritchie movies, and he laughed, softly patting my back. “Oh no, you wouldn’t be able to watch a Guy Ritchie movie.”
Dr. J had an easy, calm manner and great sense of humor. He worked with TBI patients all day, every day, and had been doing so for decades. So, he knew enough about TBI to help me manage my expectations. He said that he was there to help support my brain’s recovery process, and with hard work, I would recover what was recoverable, which is all anyone can offer—but I knew much of it would be up to me.
At this appointment, Dr. J had me sit in a chair that supported my chest and had me focus on a single focal point and he manually moved my neck as I followed his instructions on where to focus my eyes. After three years, my neck released, and my head could turn.
When the eyes are moving back and forth uncontrollably, the body will seize up to protect itself from further injury. We also engage in self-protective behaviors subconsciously because that’s how our brains work. If something hurts us, we store that information, so we don’t do it again. But this can backfire. Giving in to dysfunction can often result in perpetuating the dysfunction.
I had to “teach” my neck that it no longer needed to be ready for trauma by continuing the eye and other rehab exercises at home—even though I was plagued, daily, by akathisia. Doing these small activities helped me feel less impotent and made me an active participant in my recovery.
July 2016, Continued
I heard Kent’s voice echo in the other room. “Hi, thanks for calling me back. Yeah, she’s not doing well. Okay, I think I have some. I’ll try that. Tomorrow at 2:30? Yeah, we can do that. Okay, we’ll see you then. Thanks.”
I heard cupboards opening and closing. I recall Kent cursing quietly. Then he was talking to himself and then he was next to me, speaking in a low, firm tone that was meant to convey reassurance, but nothing he said registered. I just remember how his hands shook as he filled, refilled, then refilled again the small plastic cup with an OTC cold and flu remedy, which the doctor had suggested.
I don’t remember how many cups I had, but I remember the detachment that came over me as my body lay twitching, twisted in the bed sheets. Though I’d stopped screaming, the terror remained, but the sedative effects of the drug blanketed and blunted the sensations, which temporarily stopped the panic from continuing to self-perpetuate. The safest place to look was a fixed point in space, on the wall. My face was wet as hot tears continued to flood my cheeks.
From a faraway place, I remember Kent replacing the cap on the bottle. He touched my forehead, and then broke down, shoulders shaking.
* * *
When in the throes of akathisia, I felt as though I was being ravaged by an invisible force that’s sole purpose was to torture me. I wasn’t capable of communicating with myself and my own experience and so it follows that I was unable to communicate effectively with my husband and family as well.
I can’t stress how important it is for us to realize that we are not the only ones suffering. There is not a more helpless feeling than watching someone you love going through this kind of pain and distress—I have been on both ends, being the sufferer and watching my daughter as she suffered. I can’t overstate how much compassion is needed for the sufferer as well as those who care for us.
In hindsight, it seems easy to say. But I didn’t have anyone who explained to me what a nervous system injury entailed, including the physical, psychological, and interpersonal consequences. Had I been given that information earlier, the road would have been less fraught, less prone to stumbles and flat-on-my-face falls.
Before I could walk, I had to crawl, and before that, I had to scoot and roll. This isn’t just a convenient analogy, it’s literal. Finding a brain specialist who was not trained to only medicate, but instead was trained to therapeutically treat brain injury was vital to my progress.
The story of me on the porch is one of many horror stories of my withdrawal and drug harm. What I’m attempting to do is interpret what happened based on my limited knowledge of neurological development, injury, and rehabilitation. As theoretical as it is, it gives me a logical framework that provides context. It’s certainly more logical than “conversion disorder.”
Trying to talk me out of the sensations would have been as futile as trying to explain to an infant that their startle response is irrational. However, had I known that this and other sensations were possible, I believe I would have been better prepared. What’s even more salient is that had I been prepared, I might not have had such an extreme experience to begin with.
Our minds are like raging rivers while we’re suffering with akathisia. It’s incredibly easy to get swept away or stuck in eddies. This is also true whether you have experienced drug harm or not. I spent a lot of time on the Snake River when I was younger, and the mantra was that if you fall in, you must lie back, and point your feet downstream, using what little control you have to avoid smacking into branches or rocks. You are of course free to fight the river. It all boils down to how and where you want to emerge.
In future articles, I’ll be addressing additional strategies I learned and continue to learn as I go through the process of psychiatric drug withdrawal. Stay tuned.
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.
Mad in America has made some changes to the commenting process. You no longer need to login or create an account on our site to comment. The only information needed is your name, email and comment text. Comments made with an account prior to this change will remain visible on the site.