Healing From Psychiatric Drug Harm, Part 2: Rational Approaches to Recovery

20
1852

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 naĂŻvely 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.

***

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.

20 COMMENTS

  1. If the image you’ve included in your post is a self portrait, it’s a beautiful one, and thank you for sharing your healing journey, JA.

    I think the biggest point to be taken from your healing journey is that all healing journeys, thus all medical treatment, must be based upon individual treatment of patients … as opposed to what we currently have in the USA … as the Covid crisis has proven, which is that we currently have a medical community whose desire is to have a one size fits all, medical treatment for all people.

    When, in reality, a one size fits all medical treatment of all system, dictated from above, does NOT work. So I totally agree, the doctors need to take back control of their power, so they have some say, thus credibility, over their patient’s health, and of their own industry. And the medical community should admit that a public/governmental medical and mental health control system of anything is likely unwise.

    Let the doctors do their jobs, and we should keep the governments out of medical care, which psychiatry has not done, nor is about, quite to the opposite. Let’s hope and pray for all of us who’ve dealt with psychiatric malpractice, that we can help to save our society, from the fraud of the psychiatrists, and a medical industry that mistakenly – albeit for reasons of greed – adopted psychiatric fraud into their system.

    Report comment

    • Someone Else – thanks for your thoughts. I don’t know if my piece advocates or suggests that “doctors need to take back control of their power” because I don’t feel that way. The reason I was inappropriately medicated was that doctors have too much power and not enough oversight from regulatory bodies.

      The purpose of the article was to emphasize that doctors provide a service. When we, the patients, don’t know what we need, we can’t make proper health choices, and we end up abdicating our responsibility to medical providers who are submerged in a corrupt system rife with implicit bias and financial incentives to medicate. This is not unique to psychiatry. It permeates all sectors of the medical system in the US and beyond.

      When there is a profit motive, the motivation to generate as much profit as possible goes unchecked. This, unfortunately, is why we are all here on Mad in America and not out living our best lives.

      Finally, I didn’t choose the image, and it isn’t me (I wish!) but I agree, it’s beautiful and it captures how, I’m sure, many of us feel at times as we work toward recovery. Take care and thanks for reading. – JA

      Report comment

  2. The first time I visited a group on surviving antidepressants, I was shocked to see that the symptoms they referred to as “withdrawal symptoms” (including akathisia) were exactly the SAME as the symptoms caused by MTHFR C677T homozygous mutations.

    Perhaps it was the fact that I had been studying the subject for a long time and the members did a great job collecting information. Many of them had MTHFR tests done. All were positive for homozygous mutations (most had C677T homozygous (double mutation) and a few had a combination of C677T and A1298C). There were no negative or heterozygous (single mutation) results.

    The C677T mutation is considered a risk factor for the development of mental illnesses and more severe depression. It can cause low Folic Acid, Vitamin B12 and Vitamin D. High histamine, and homocysteine. You need Folic Acid and Vit B12 to recycle homocysteine into methionine and be able to make SAMe. SAMe donates methyl groups to aid in processes like the manufacture of neurotransmitters, histamine metabolism and much more.

    Many of the symptoms people talk about on posts can be caused by high homocysteine and others by high histamine.

    Antidepressants and antipsychotics affect the same nutrients. So you can be harmed by both taking them or stopping them since both can dysregulate methylation.

    “In addition, some medicines used for depression treatment can potentially interfere with folate and Hcy metabolism. However, whether the deficiency is primary or secondary to depression, low level of folate limits the response to antidepressants.”

    “Homocysteine and correlated 1-carbon metabolism pathway seem to give important clues to the multifactorial etiology of psychiatric disorders, since impaired gene methylation may be a critical pathological component in disorders such autism, schizophrenia, DEPRESSION, bipolar disorder, and AD. In fact, this association has also been observed in other psychiatric conditions such as post traumatic stress disorder, obsessive–compulsive disorder, panic disorder, and anxiety”

    “Accumulating evidence suggests altered 1-carbon metabolism in the pathophysiology of these psychiatric disorders, since folate and vitamin B12—which are essential cofactors of enzymes involved in Homcysteine methylation to methionine—are found to be deficient in these patients.”

    Report comment

    • Silvia – thanks for your comment. Withdrawal symptoms from psychotropic drugs can also mimic certain types of head trauma and acquired brain injuries as well. It’s important not to confuse correlation with causation.

      While I think it’s imperative to be aware of our physiological makeup to the best of our abilities to make informed healthcare choices, it’s also important to remember that our biology and genetics are not final, deciding factors for what might emerge individually.

      I’m not sure what sources you quote here but again, the piece is about healing from drug harm, not postulating on other biological models of mental illness. Knowing “why” isn’t, for me, as helpful as knowing how I must proceed to (re)gain as much functionality as possible for myself and my family. That’s what this series attempts to do: help others find ‘how’ not ‘why.’

      Finally, part of healing for me has been to extract myself from the biological model of mental illness because it’s akin to describing a freshly baked pie as “salt.” While salt may or may not be an ingredient, focusing on that single ingredient detracts from the true nature and complexity of the pie.

      The way we approach, conceive of, and understand mental health today has been polluted by money, power, and medical hubris. The whole system needs redress. There are too many factors that contribute to our health or ill health. By focusing on genetics or biological factors, we permit a false target to dominate the conversation, which then conveniently allows us to ignore the sociopolitical and cultural inequalities and injustices that arguably play a much larger role in mental health than a genetic mutation. Take care and thanks for reading. – JA

      Report comment

  3. Well written!
    Diet, sleep, and exercise were part of my recovery, also. It was all trial and error – to arrive at the best – for me.
    Because you expressed your pleasure in sleep – I’ll add my own magic sleeping solution. It was probiotics. I was working on getting my gut to function – and wala – sleep. I have no idea why.
    I enjoyed your piece.
    Best of luck to all.

    Report comment

    • Thanks, Amy. I’m glad you’re doing much better and thank you for your kind words.

      Just a thought – it may have been the probiotics, or it may have been the right time for the probiotics based on where your system was due to all your other hard work. It’s simply impossible to know if, had you tried probiotics earlier on in your recovery, they might not have made such a large difference. I only suggest this possibility because sometimes WHEN we try something is as important as what we try. That’s why I feel it’s so important to focus on the big picture and on things that make sense in the long term (such as a healthy diet, adequate sleep, etc.). “Trial and error” – absolutely.

      It sounds like you learned what worked for you, and what didn’t, and you kept marching forward–arguably the single most important healing strategy there is. Best of luck to you as well! Thanks for reading and take good care. – JA

      Report comment

  4. It’s so good to read what you have to say as I’m nearly 8 years off all psych drugs and having a terrible time with my gut and what I’ve come to think of as “inner akathisia”, that uncomfortable and painful set of zapping pain pangs and neuro-emotions that arise from my gut and take over.

    What’s heartbreaking is I can barely afford housing and food, so rely on Medicare for health practitioners, none of whom have even a clue of what is going on, even when I tell them. I have terrible reactions to things they say nobody reacts to. “I’ve never seen anything like this” said the eye surgeon after I had a horrible reaction to eye drops from which I have not recovered. I can’t afford the kind of testing you’ve had, much less a practitioner who can work with the results. I’m suffering in a way that limits my life activity and the only thing I know for sure is that one of the tests the GI doc gave me said I’m not absorbing fats and am likely not getting the nutrients I need. I feel as if I’m slowly dying…well, honestly, all of us are, but I hope you know what I mean. I’m now on a very limited diet, similar to what you mention here even as I live on a full working farm and have abundant organic food available, much of it is restricted due to the nature of the diet the GI doc medicare will pay for recommended.

    What do we do when the resources simply aren’t there? For now, I’m doing what seems best, but there’s no way of knowing. I wish there was a way to get those tests and that kind of support you are able to get. I’m honestly envious and while your article is informative, it actually reinforces the sense of despair I have over not being able to get help.

    Report comment

    • Hi, Ellen,

      I wrote a long comment in reply to yours which I can’t find now. I’ll just say, I have Medicare also, my money goes to food and housing. I can relate. I’ve never met a Dr or health care provider who accepts Medicare who is open to a conversation about psych drug harm.

      Report comment

      • KateL—hi, thanks for reading, and sorry your comment was eaten!

        I’m not suggesting people find providers who are “open to a conversation about psych drug harm,” in fact, just the opposite. If you’ve been harmed by psych meds, you are a walking, talking, breathing threat to every medical provider you encounter. If you walk in, guns blazing with “the truth about psych meds,” doors will close before they open. It takes time to cultivate these relationships.

        Much like reading a writer, it’s easy to assume all kinds of things about a medical provider, and they will pick up on it. Human beings don’t just communicate using words. You are part of a dynamic and that dynamic is informed by a million nonverbal cues. Do you ask them how their week is going? Have you expressed care, compassion, and empathy towards them? Or do you feel that’s their job, owed to you? These are all rhetorical questions, and I’m not suggesting you don’t do these things, but coming out of the gate with “drug harm” often sets us up for a complicated and confrontational relationship with providers. I know this because I did it, over and over again. The hope is that with my experiences, I can help people avoid the mistakes I made in this arena. In between the lines of these experiences are the many clinicians I alienated because I pushed the conversation of drug harm on them too soon, too hard, or too much.

        Finally, I was on state Medicaid for large portions of my adult life. I remember how the presence of my then-socioeconomic situation felt like a third entity in every clinical interaction. But it’s important to remember that when you walk into that room, you’re carrying every mean, cruel, and apathetic experience from the medical community with you, (along with the fears that accompany socioeconomic fragility), while your provider is carrying every petulant, apathetic, and demanding patient he or she has ever encountered, along with all of their fears. You are not in that room alone together! Your pasts, prejudices, and biases are all there.

        Being aware of the current or potential dynamics that are created is the first step in changing those dynamics, which can then begin to incrementally improve clinical interactions. Wishing you way more than luck – JA

        Report comment

        • This is why I stopped seeking medical care of any kind. I definitely don’t think it’s my job to ask them how their week is going. I believe that even if I tried that it would only arouse suspicions. “Is this borderline trying to gaslight me? Is she drug seeking?”

          The fact of the matter is that many health care workers have been vicious toward me. They mocked me and refused treatment for a badly fractured ankle because I had emitted to the EMT s that I was dealing with a bed bug infestation. The reality is that many of them are liars and now the media is pushing that they are burned out, that they have “moral injury.”. I don’t care. I don’t pretend to care. If I never have to be under their power and can just die alone in my bed that’s my preference.

          I’m so used to being shamed and blamed and accused of one thing and another, it just doesn’t matter anymore. My life is already destroyed.

          Report comment

        • Wow, you preach about how good your way of “recovery” is and then you are insulting and condescending to another survivor. Not a good look, and I won’t be reading any more from you. Most of us here have been victim-blamed, as you are doing to KateL, until we are barely alive and WE DO NOT NEED ANY MORE.

          Report comment

          • Thank you.

            This is what I’ve been dealing with:

            https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9567085/

            “Results suggested BPD patients are viewed by mental health professionals as ineffective, incomprehensible, dangerous, unworthy, immoral, undesirable to be with, and dissimilar to the mental health professionals. Moreover, disgust propensity and the pathogen component of disgust sensitivity were associated with stronger negative attitudes towards BPD patients.”

            Clearly I’m not safe anywhere near a healthcare facility even if I ask them how their week is going.

            Report comment

          • KateL & Faster Pussykat – I’m not sure how I was insulting or condescending, and I’ve never suggested that “my way” of recovery is superior to anyone else’s. I’m sharing what has been the most helpful for me.

            I get the anger and know how it feels to be blamed for the harm I continue to deal with from the medical system. Every time I walk into a clinical situation, my guard is up, but if I am not aware of how my behavior affects the provider, I feel like I have less, not more, control over the clinical interactions and outcomes.

            The point isn’t whether a provider deserves your compassion or empathy and, as I’ve often said in the past, it isn’t about giving anyone a “pass” for bad behavior. It’s about obtaining the best possible care for yourself. If you have found better ways to get optimal care, then of course you should trust your own judgement and experiences. Good luck – JA

            Report comment

    • Ellen,
      As a writer, I’m always surprised at how my writing impacts different people in different ways. Writing isn’t a solitary act, it’s a collaboration. When you read anyone’s words, you are filtering everything through your field of experience. For example, why does one person come away hopeful while another is despairing? That isn’t simply socioeconomics – but we can’t discount the massive impact socioeconomics has on our health and well-being. Had all this happened 16 years ago instead of now, for example, the road to recovery for me would have been infinitely more difficult, because when you’re worried about basic necessities, why wouldn’t you feel extreme distress?

      If you’re worried about basic survival, feelings of fear and despair seem like perfectly appropriate neuro-emotional responses. Financial instability and struggle cast a pall of worry across everything. That said, I know people with endless financial resources who are in the throes of continued suffering due to drug harm and others who are literally living hand-to-mouth who have healed. Socioeconomic resources (or the lack) play a role, but not the only role, in recovery.

      It sounds like you’re doing much of what I’m already doing, though there is more to come in the series. It’s important to note here that it cost me more money to have my brain damaged by drugs than it does to try and heal that damage. There were no costly, unusual out-of-pocket tests done; they were done based on symptoms, covered by my fairly unremarkable insurance plan. Metabolic and nutritional panels are typically part of getting a yearly physical from a GP as long as they are deemed medically necessary by Medicare (though I’m not an expert on state-by-state coverage). That’s something you’d have to asses with your provider and again, this boils down to the relationship you’ve cultivated.

      The continued hypersensitivity you have with foods and other drug treatments can be seen as important information for you—your brain has more healing to do.

      Do you remember where you were 8 years ago? Have things improved at all? Even the slightest improvement is reason to have hope. What we’re shooting for here is progress, not perfection. Expectations can be a huge source of depression, despair, and discouragement if they are unrealistic and rigid. We can only heal what can be healed and expectations that are more fluid allow for more self-compassion and less stress on the system.

      What we’re really talking about here is grief and grieving. The loss of things that will never be whole and the continued loss—along with the daily reminders of what was, what could have been, what will never be. However, this isn’t just the experience of those of us harmed by drugs; this is the human experience. So, what are your expectations about recovery? Do those need to be adjusted to a more realistic place?

      Finally, I think of how much organic food costs and how many people can’t afford healthy food (this is such a travesty, I could write a whole piece on this alone). So you’ve got one of the most vital pieces of this in place—access to healthy food.

      Again, there was no single treatment that made me “whole.” In fact, you sound like you’re more physically functional than I am. But I continue to work on that while maintaining realistic expectations of what “recovery” looks like. If I were to contrast where I am now with where I was 30 years ago, I’d be in despair. So, I compare where I was 3 years ago to now, and it works. It costs nothing to change the view inside my mind. Take good care and thanks for reading – JA

      Report comment

  5. Dear J.A.,
    I was waiting for part two and it did not disappoint! Such a positive and realistic piece. When our decisions are guided by logic and purpose things turn out so much better in the long run. So hard to do at times with Akithisia, when our emotional brains are screaming fix me NOW! Once we’ve been so severely injured it’s so hard to trust again and I find the impulsivity associated with Akithisia makes it difficult to stick to anything for long enough to reap some palpable benefit. What helped you to maintain such a logical, grounded approach? You have obviously cultivated it and mastered it because you were able to sit down and write such a beautiful piece during a flash of it! Kudos

    Report comment

    • Debbie,
      Thank you for the kind and generous words. When my emotional brain is screaming, I have to focus on calming my system. The thoughts, emotions, feelings—these are all accompanied by a nervous system response. As I’ve written in earlier articles, coming at these responses directly won’t work. You need to come at them indirectly, something I’ll be addressing in the next article. It’s about calming the system. So, if my emotional brain is screaming, for example, I don’t get on social media. I don’t reach for a candy bar or a caffeinated drink, because all these increase psychological and physiological stress. I make choices that will decrease nervous system activation in ways that are under my control. I can’t always choose the trigger, but I can choose to not make it worse.

      Finally, I wrote this piece after the bout of akathisia, not during it. 😉 Maintaining a grounded, logical approach has been what’s worked—it’s that simple. If it didn’t work, I’d be trying another way. I’m fairly averse to the experience of akathisia by now, so that is a fantastic motivator to stay on track. Best of luck to you and thanks for reading – JA

      Report comment

      • Thanks for clarifying that last point! Calm the system will be my new healing moto, and I will try to slow my actions down some and give myself time to choose more wisely instead of running at the speed of Akithisia. Looking forward to your next piece.

        Report comment

LEAVE A REPLY