I sat down to write this article with the experience of severe akathisia fresh in my mind. For the first time in over a year, I awoke to it coursing through my body: a familiar, paralyzing anxiety accompanied by feelings of terror. After having akathisia for over 25 years, it is arguably more familiar to me than states of peace, so one would think I would know what it was immediately. But I didn’t. My first thought was, “What is wrong with me?” Something had to be wrong somewhere for me to be feeling that unsettled, frightened, and frozen—another consistent feature of akathisia for me.
It took me the better part of the morning to realize what it was.
It lasted a few days, and I emerged relatively unscathed. Recalling the river metaphor from my last article, I leaned back and pointed my feet downstream. It was a sobering reminder that akathisia and other expressions of drug harm are or can still be part of my life, even if it no longer debilitates me, and even if I don’t have enduring bouts of it.
In my last piece, I wrote about various neuro-rehab therapies I engaged in with Dr. J, the functional brain injury specialist, and that there came a point when my husband and I knew we’d reached the end of what medical science could offer me. That sentiment was more about whether medical science had a pharmacological “fix,” not about whether I availed myself of different treatments, because I did, some with more success than others.
I also mentioned that we had help along the way, various medical providers without whom I likely wouldn’t be doing as well as I am. While I would prefer to steer clear of mentioning specific medications or supplements I’ve tried, I can’t avoid it if I am to recount with any accuracy the many steps—and wrong turns—I took.
Calming It Down
In 2017, I began seeing the new psychiatrist, Dr. B, and he followed the clinical practice guidelines (CPGs) for treating drug-induced movement disorders by prescribing a beta-blocker and then later, a centrally acting alpha agonist, or Alpha-1, also an antihypertensive. Both medications calm the central and autonomic nervous systems in different ways.
I started the Alpha-1 medication while I was in physical therapy, and so it’s unclear if it was the drug, PT, or the two combined, but shortly after starting that medication, my speech and gait improved. It relieved the akathisia for about a week, but then the terror and pain returned with a vengeance. This became a disheartening cycle. Each new treatment, whether a supplement or drug, would help for short periods, inexplicably make akathisia worse, or do nothing. If and when something helped, it never lasted.
But in 2017, my injury was still fresh, so I remained naïvely hopeful that there was a way to reverse the damage with a pill. I became bitter and cynical as people continually asked me if I’d tried ___ (medical marijuana, herbal tea, magnesium, going for a walk, etc.) because it helped them with their ___. It was beyond discouraging.
Now I know akathisia is a presentation of brain/nervous system trauma, but it’s not that simple. Remembering the van-crash analogy, akathisia is not the crash; it is one of many injuries sustained in the crash.
It took time for the drugs to do their worst, and it took time for me to accept that recovery would be an ongoing process (the “infinite game” my husband referred to in his last article), one that would inform the rest of my life.
While neither medication quelled akathisia at the time, I stayed on them because the premise behind them was sound. My nervous system was out of control; it needed to calm down.
Though the beta-blocker has a long-established history of safety, I wish I’d made a more informed choice about the Alpha-1 because eventually, I’ll need to withdraw from it. Desperation often leads to decisions that are regrettable in the long run. As with every pharmacological “solution,” there are always tradeoffs. Knowing the tradeoffs and risks before beginning any type of psychoactive substance, prescription or no, is critical.
Dr. B has a philosophy that differs from many of his colleagues in that he seems to know, to some degree, that he is treating symptoms, not an underlying disease. In fact, he was known for treating some mood disorders with opiates—a practice my former doctor (who knew Dr. B) rejected because of the inherent dangers of opiate use. I know this because in 2015, I had dental work done the day prior to my three-month med-check appointment and I showed up with a puzzling revelation.
By then, I had been suffering with debilitating akathisia for years. My then-doctor believed it was a perplexing case of “intractable bipolar depression,” and was constantly on the lookout for treatments. In his office I told him that I’d had dental work that left me with some residual nerve pain, so the dentist had prescribed a low-dose opioid. When my tooth began acting up, I took a tablet (5 mg. along with acetaminophen) and “the pain” (drug-induced akathisia) completely dissipated.
In my mind, this was interesting information, but my doctor’s reaction was swift and concise: “Promise me you will never take opioids for that (akathisia).”
I promised him and kept that promise until 2016, when I was coming off Latuda and he prescribed the same opioid. He knew it worked for me, and I was so suicidal he had no other option. I took slightly less than what was prescribed but he and my neuropsychologist at the time all but ordered me to take the full daily dose.
I was concerned about developing addiction and/or dependence and concerned about my functionality. I didn’t want to feel and be “drugged.” So, rather than two single large doses, I took smaller doses more frequently throughout the day so I could function.
Opioids in general have never made me feel anything but nauseated. In some people, they cause feelings of euphoria. I didn’t want either state; I was seeking relief from akathisia. All the other drug damage was just part of the horror show but akathisia was the main attraction because of how devastating it was.
Once again, like most things I “threw” at akathisia, the relief was short-lived, but the opiates provided small intervals of relief. When I started opiates, it was with the goal and understanding that they were a temporary solution. I knew I had to find a permanent one that didn’t involve more psychoactive medications.
At first, I tried Dr. B’s patience. In our early appointments I could be defensive and, at times, aggressive. In time, I accepted that he was just a human being doing his job. It took a while for trust to develop. As my husband pointed out in his previous article, trust goes both ways. Dr. B’s worldview was diametrically different from mine, and I learned to accept that, too. I had to decide what was more important: being right (and righteous) or getting the help I needed. I chose the latter.
By the time I’d transferred to Dr. B in 2017, he had backed off using opioids in his practice and he told me I needed to go to a pain clinic, which I did in 2018.
“What Took You So Long?”
I was upstairs in a spare bedroom shoving last-minute gifts, purchased online, into gift bags. I didn’t bother with tissue paper or tags. I could barely move or breathe.
It was December 24th, 2017, and I was crawling along the floor, holding my gut with one arm as sobs choked out of me, tears blinding my vision. I looked behind me, astonished that there was no trail of blood on the floor—as absurd as that sounds, for the amount of pain I was in, it seemed reasonable.
At the time, a friend who was down on his luck was staying with us. My pain was difficult for anyone to witness, but it was especially hard on him. He knew akathisia, too. He made some calls to a local pain clinic—one that had a waiting list of several months—pulled some strings, and somehow got me in within the week.
I was still in the proselytizing phase of my recovery, believing it was my mission to educate all medical providers about the harms of psychiatric drugs, so I told the nurse practitioner at the pain clinic, “Denise,” the truth about why I was there.
After hearing my story, Denise said, “Well, what took you so long to get in here?” In hindsight, I was epically lucky. Had I gotten anyone else, they might have dismissed me as drug-seeking or mentally ill.
My opioid prescription was doubled, but I inched my way up 2.5 mg. at a time. I’m highly sensitized to medications, so that small increase gave me a brief reprieve from the unrelenting pain. I never even got close to the maximum amount I was prescribed because I didn’t want to be nonfunctional or nauseated. Further, I worried about long-term use of opioids.
Opioids have been thoroughly demonized, especially in Utah, a state that ironically leads the country in psychiatric drug prescriptions. In my own family, I have seen lives both saved and lost due to opioids. So, I find it unhelpful to attach moral judgments to medications—they are amoral tools and like any tool, they can be misused.
If taking this type of medication taught me anything, it was that I knew I couldn’t get complacent, and I didn’t. If someone shatters their femur, they don’t take a pill and call it “good.” The work of healing begins the moment the injury occurs. We can either support the process or frustrate it; we are active participants either way.
Once again, seeking relief in a pill was a frying pan/fire situation. I was on a benzodiazepine and an opioid, medications that are dangerous when taken together. Dr. B ordered a sleep study. I was breathing steadily because my opioid dose was relatively low, but I was still spiraling physically and emotionally during the day.
It was about a year after I started at the pain clinic that I went in to see Dr. J, the functional TBI specialist I referred to in my last piece.
“You’ve GOT to be Kidding Me”
In the second week of neuro-rehab, Dr. J broke my heart.
He told me that my entire diet needed to change if I wanted to heal my brain injury. No dairy, grains, sugar or artificial sweeteners, processed foods, or stimulants, period. Inflammatory foods, he said, create an increased “load” (re: stress) on the brain. He also suggested that I take a food sensitivity test to see if there were any culinary red flags, foods I could eliminate temporarily to allow my gut, which was in total dysfunction, to heal. At this time, I had no idea that gut health (the enteric nervous system or ENS) and inflammation had anything to do with psychological health and brain function.
Looking back, Dr. J’s timing was probably strategic. He’d said all this just as we were checking out, almost as an afterthought, like it was no big deal.
“You’ve got to be kidding me!” I said, incredulous and angry.
Up until that point, I had mercilessly mocked the “gluten-free” and “dairy-free” movement as yet another pointless health craze. But to have this man, who knew more about brain function than anyone I’d ever met, tell me that I could no longer enjoy “normal” food was too much. I sobbed in the car on the way to the grocery store—and I wasn’t just crying over milk. Everything felt personally unfair.
By the time I got home, I felt a glimmer of renewed hope. Dr. J had assured me that his other TBI patients saw radical shifts in their symptoms when they cleaned up their diets to allow their brains to heal.
I was dutiful in the initial protocols (no grains, sugar, dairy, processed foods) while I waited for the results of the food sensitivity test. When the results arrived, I was floored. My body reacted to the majority of foods in each food group, including spices. Even the healthy foods in my diet were in the yellow (moderate sensitivity) to red (high sensitivity) zones. What was available to me in the green zone were foods I never ate, didn’t like, or both.
I eliminated the problematic foods. After a few months, I took another food sensitivity test. Incredibly, there were even more foods in the yellow and red zones.
I was facing the same problem with food as with everything else I tried—my nervous system, including my ENS, was still over-reactive. While I felt better physically because I stopped eating sugar and processed foods, I still had akathisia and other manifestations of neurological damage, with new dysfunctions that seemed to develop each week.
Still, I stayed on the food protocols because the underlying premise (“clean” eating) made sense. Dr. J had me try various supplements, but they either did nothing, had a short placebo-run, or made things worse. It was during this time I began to notice how fatigued I was all the time. The term “wired and tired” fits to a T.
I’d cleaned up my diet and I was in talk therapy and neuro-rehab, but I still had akathisia along with uncontrolled movements and dystonic seizures. I refused to increase my opioid dose because long-term it didn’t make sense.
And then, Kent stumbled upon something we hadn’t learned from any of my providers.
“Everyone Has Bipolar”
As I was writing one morning, Kent sat on the couch in my office, reading. Suddenly, he said, “Holy @$%*!”
“What?” I asked, startled.
“The drugs totally screw up the endocrine system. Thyroid, metabolism…”
We began looking at the role hormones play in… well, everything, and he was right. It became clear I needed to find a specialist, but I had no idea where to begin and had little trust in MDs. I mentioned it to a nurse practitioner I was seeing, and she recommended “Terry,” an FNP-BC who specialized in endocrinology. “Terry is fantastic,” she said, adding, “but she only does what she does.” I took that to mean Terry worked within a very limited scope, which, as a specialist, seemed reasonable and comforting.
This was in 2020 amid lockdown, so my consultation with Terry was over the phone. I detailed my physical symptoms and told her I was recovering from brain trauma via psychiatric drugs and a TBI. Though I didn’t tell Terry my life story, I mentioned that I’d been misdiagnosed with bipolar disorder back in the late 90s. She quipped, “Everyone has bipolar.”
By way of explanation, she said mood swings are a normal part of the human experience and she felt that was becoming a lost concept in medicine. Terry had also had some experience with TBI because her daughter had sustained one. That’s what led her to endocrinology.
As a provider, Terry believes in doing her own research rather than blindly following clinical practice guidelines because, she said, CPGs were “created by men who don’t care about how older women feel.” Whether that’s accurate or not, she explained why she thought the current medical model regarding hormone levels and hormone replacement therapy, HRT, was misguided. Terry treats her patients based on their individual biophysical makeup, health history, and most importantly, how they feel, not on arbitrary parameters decided by the AMA. Based on our consultations over the past couple of years, I get the sense that Terry feels a bit outside the medical system, too.
Terry works with numbers. Blood tests show her numbers, which then tell her someone’s life story, and I was no different. After she looked at my blood draw, she could name all my symptoms down to things I’d accepted as physical quirks, part of my “normal.” She didn’t just test thyroid function and other endocrine issues; she also did an entire nutritional panel. As I wrote in April, “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.”
My blood tests showed that lack of absorption. How could my brain and nervous system heal when my body was incapable of absorbing necessary vitamins and nutrients? It couldn’t. Here’s another fun fact: The “fear center” of our brain (the amygdala) can survive off stress, carbs, and exhaustion for a long time. And like a muscle, the more we feed/”work” it, the more dominant it becomes. The “slow brain,” capable of reason, intentionality, and emotional regulation, resides in relatively new parts of the human brain and demands diverse, nutrient-dense foods.
Looking at my thyroid test results going all the way back to the early 00s, she exclaimed, “Your thyroid has been plummeting for years! Why haven’t any of your doctors treated it?”
Additionally, my progesterone was low. Since I was perimenopausal, that made some sense, but she verbally waved that away.
“It doesn’t matter who you are or where you are in life, you can have low progesterone, and if you do, you will have the worst anxiety of your life. Are you sleeping?”
Of course I wasn’t sleeping.
Terry instructed me to increase my daily water and protein intake and then she “prescribed” targeted supplements to address my nutritional deficiencies,thyroid medication, and progesterone—four times the amount suggested by the AMA.
“Anything less than that,” Terry said, “is a tease.”
After starting the supplements, thyroid, and progesterone, I slept like I hadn’t slept in decades. The daily akathisia became more of a background rumble with fewer screams and roars. Having a calmer system allowed me steadier ground so I could do more toward recovery, including withdrawing from akathisia-inducing medications, and reducing my opioid use. I was still dealing with cell-crushing fatigue but if I could get akathisia under control, I reasoned, I could live with anything else.
But that isn’t how the body works; nothing exists in a vacuum. When you tweak one thing in your system, it impacts everything else to varying degrees and ways, both positively and negatively (a concept that seems to elude the psychiatric profession as a whole).
Progress, Not Perfection
I am not promoting any of these specific treatments. Each external treatment and therapy were targeted toward the ways my system had expressed injury. “Calming the system,” for example, makes sense for every brain injury; how that’s accomplished will be individually different, but it’s a fundamental step that applies to everyone.
It’s also worth mentioning that none of the treatments I tried were based on a single individual’s subjective experience shared on an online platform.
Finding good providers took research and time, and to develop a good rapport with them, my approach had to evolve. For example, by the time I found the pain clinic, I’d lost the “doctor-fix-me” mentality because I’d accepted the truth about what could and could not be done medically. This made a huge difference in all my clinical interactions.
Medical clinics are professional settings; the exam room is your provider’s office. They go home to their lives as the same fallible human beings they are (with the same blind spots, weaknesses, and biases) in the professional setting. It’s difficult to feel empathy in that setting for most of us but remember that many providers are unaware of the inherent flaws in the system. It’s difficult to trust again after being mistreated. Just remember that providers want to help, so there is a shared goal. Empathy isn’t about giving them a “pass”; it’s about improving your interactions with them so you both get what you need. Finding someone who is open is rare, but when you do find them, don’t abuse their openness—you might shut them down.
Timing was also an important element in my search for help. Had I seen Terry while withdrawing from Latuda, the treatments she offered wouldn’t have been as effective.
As I’ve maintained throughout this series, mindsets matter. If someone’s femur is shattered in an accident, focusing on the unfairness of the injury, or directing energies toward finding a fix-all pill while hobbling around on the injured leg (thus causing further harm) hinders recovery, especially if the goal is to walk again without pain. A more logical approach would be to stop the bleeding, then assess the damage to form a treatment plan. Since there are no diagnostics for drug harm, the (brain) injury model is ideal because traumatic chemical brain injury (TCBI) from psychotropic drugs presents neurologically, behaviorally, and physically, like all TBIs.
Many of the treatments I started didn’t lead to immediate relief, but they made sense, and laid foundational groundwork for the next steps. That said, a holistic approach with informed steps led to better outcomes—but there was also a lot of trial and error.
The treatments my providers offered helped bring me to a healthier baseline, but diagnostics came first, and they had to make sense. Had my thyroid and progesterone not been low, Terry would not have treated them. I took supplements based on blood-test results, and used medications that calmed my system—note that the goal was to calm, not to eradicate symptoms.
Having a knowledgeable healthcare team is important, but the work of recovery is ultimately mine—I’d learned my lesson. I had to be an active participant in my own recovery, which required lifestyle changes as well.
Sleep is crucial to recovery. Without quality, uninterrupted sleep throughout the night, recovery is impossible because sleep deprivation causes physiological stress. So, I had to work at adopting healthy sleep habits. Medications or supplements won’t help with sleep or any other injury if they are being undermined by unhealthy behaviors.
Exotic or extreme diets might create a short-run placebo effect, but ultimately, healing a brain injury demands a diverse and nutrient-rich diet. I didn’t rely solely on supplements to remedy my nutritional deficiencies, though. I avoided the Western diet, because inflammatory foods cause physiological stress. I began eating regularly, because skipping meals also causes physiological stress.
When we have physiological stress, that translates into nervous system stress. Recalling the Polyvagal chart, when we experience physiological stress, that translates into psychological and emotional stress, all of which become self-perpetuating.
I didn’t know it then, but I was in the beginning stages of starving my amygdala of its stress, sugar, and exhaustion diet.
To be clear, and from experience, I don’t believe someone must be drug-free to start improving their quality of life and health—just remember the tradeoffs. I still have at least three other drugs I am tapering from, but changing my approach was essential. I learned to not trade what I want now for what I want most.
This was not the life I’d planned for myself, and I wasted valuable time caught in a negative cycle of blame, anger, and helplessness. No, it “shouldn’t” have happened, but it did. Any type of research I do now comes from a healing mindset—open to learning how to recreate a healthy homeostasis—a significant shift from the wounded, angry, and bitter mentality I’d allowed to choke my life for too long.
I’ve come to accept that I may never be the same after having been harmed by prescription drugs—but who isn’t impacted in some way by unwelcome change? This is where the importance of choice comes in. How do I want to live with what happened? I can’t change the past, but I can choose how to move forward, focusing on progress, not perfection.
Recovering from akathisia and other drug harm is a marathon in uncertain, often hostile, terrain. There will be setbacks, wrong turns, dead ends, and moments of defeat. What’s important to remember is every setback and wrong turn still counts as steps forward when engaged in recovering from traumatic chemical brain injury.
More to come. 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.
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