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No, I have no idea what that means. My son used to say it all the time and it made me giggle. It's actually under one of my paintings, part of an art installation called "The Art of the Unconscious." But more on that later.

Every once in a while, I get an email that stops me in my tracks. It's not just because it's gracious or appreciative of the work we do to create awareness for Black Box Warnings and AKATHISIA, a (sometimes) drug-induced neurological condition and usually the impetus for the email.

It's because the ways in which many people see their experiences with AKATHISIA are so varied, so informative, I'm forced out of my comfort zone. It's an invitation to revisit things I believe to be true, then a call, really, to dive into what I'm basing my "truth" (with a small "t") on, exactly.

I received one such message yesterday, and the individual wished to remain anonymous, so I've changed and removed any identifying information so that we could explore, together, this question, this unknown, this horror that is AKATHSIA, and ask ourselves again—what is it exactly, and why does it happen? Why did it happen to me?

The message (again, altered to protect their identity) is in color. (If you're out there, I do hope you get a chance to read this...thank you again for making me think. ;)


Comment: Hello, J.A. I read your article about what you went through with akathisia. I am so sorry you deal with this at times still. I want to tell you that your article saved my life and my soul, too.

You're very kind to say so. I'm glad my words were there when you needed them.

I think I know what you had to deal with. I had akathisia some years ago and never knew what had happened to me until I read your article. But it may surprise you and those in the medical field that it wasn't drug-induced.

It wouldn't surprise me—not much does. The medical field, on the other hand, is a different beast altogether. I'm willing to bet that the first two years of med school concentrates on training medical professionals to not be surprised by anything, or more specifically, not appear to be surprised. 'Surprise' indicates "not knowing" and uncertainty. We wouldn't want that!

It was from severe anxiety and an adjustment disorder I had, along with mood issues, due to severe employment stress. I left my position and the akathisia resolved, but I had no idea it was akathisia until now.

In that same spirit, much of the time we believe we know the causality of things in our lives because "Yesterday, it was like this, and today it's different. Ergo..." Then, we believe we know why we suddenly lost our minds, ourselves, our ___, whatever it is. I do know someone who claims she's had akathisia since she was a child. I have no doubt she has. She didn't take any medications, either. I also don't doubt that.

However, we are not omniscient observers of our subjective experience. What we "know" is precious little. But here are a few things we can be fairly certain of.

As sufferers, or former sufferers, we know that akathisia is not an attitude or conscious choice. It's not a lack of cognitive-behavioral skills since you likely learned many of those skills through therapy.

We know that the brain changes in measurable ways, and in neuropsychological and neuro-physiological ways in instances of severe trauma. Depending on the age and the individual's ability to process the trauma, it can and often does, take root to become a type of emotional concussion. That's what PTSD is, if you think on it. It's not a choice, a lack of skills, or a sign of mental/emotional weakness. Your brain undergoes physiological changes.

I'm a mental health professional. I found your article after I took an online class on certain types of medications, and they described akathisia. I remembered the experience and had the same experiences you wrote about.

There's also epigenetics to consider. I see epigenetic manifestations of pathology and trauma like tiny Pandora's boxes inside us. One might have the genetic predisposition to develop an addiction to a specific type of drug, say opioids. Toss in trauma, education, support systems or the lack thereof on both, lack of coping skills, socio-economic and sociocultural factors, religion or belief systems and how they impact familial relations, communal ties, expectations—you do see where I'm going? There are too many variables to even consider.

So when the individual becomes addicted to opioids after dental surgery, oftentimes, the dental surgery and the individual's inability to cope are cited as causes rather than a precipitating factor and genetic predisposition. That said, akathisia may have presented during an acutely stressful personal life circumstance for you, but there are too many variables, including the as-yet unknown pathophysiology of akathisia, to say with any certainty, that your job stress was the cause; however, it seems like it could very well have been the precipitating factor.

I couldn't stop moving, pacing, I couldn't sit still, and I started having frightening, terrible thoughts about taking my own life. It was all I thought about for weeks on end. I sought therapy, and nobody knew what was wrong with me or what akathisia was.

MHPs, (mental health professionals) at this stage in the game, are our best hopes for change and awareness. The pharmaceutical industry has nothing to gain by courting non-prescribers. However, what I've been seeing more and more, something that's beyond disturbing, is MHPs teaming-up with prescribers in "Groups," a.k.a. centralized clinical practices. Like what you'd find in an inpatient facility, but for outpatient treatment. It's disheartening and, in this writer's opinion, corrupt. The few old-school therapists I have seen told me, point-blank, that medicating the general population has been the biggest hindrance to their practices and patients' wellbeing.

Keep in mind, I was not taking antipsychotics or antidepressants. This just happened with my job stress. I lost myself completely. I didn't know who I was anymore. Nobody understood my experience at all. Everything I found important was suddenly unimportant because I was in so much distress, all the time. I didn't care about anything, and everything felt like it was slipping away. I avoided negative things, anything that could trip me up and allow the terrifying thoughts to take over. I was always in fear/survival mode.

Yes, akathisia has some specific "earmark symptoms" that I hear about from all over the globe. I do understand. So, here's something else we're rather certain of--at least for the time being. We know that antipsychotics and antidepressants are not the only offenders re: akathisia, and sadly, they've begun to normalize side effects like tardive dyskinesia via drug ads. TD is brain damage. Period.

If you were "always in fear/survival mode," then, based on what we know of that region of the brain and its function, something went wrong in the limbic system, possibly the brain stem, and perhaps even the vagus nerve. Which part? How? We have no idea, we couldn't know.

But working backwards, we know the limbic system is responsible for the 4-Fs of survival: fight, flight, freeze, faint (people always forget the 4th ;)

Freezing to survive is very different from 'playing dead,' aka 'fainting,' isn't it? Can you imagine playing dead as a predator sniffs around you, trying to sense a pulse? No way. How could you EVEN?

Thanatosis, death-feigning, is the antithesis to human survival. While impalas or opossums habitually "play dead," they don't do it because they have other options. They can't control it. It's a tonic immobility that, even if they wanted to move, even if the option to run presented itself, they couldn't. Not wouldn't, couldn't. Whatever akathisia IS, I know what it does.

Or, I have a pretty good idea based on the human brain and its myriad of functions. I believe it impacts (and hijacks) some, (most, all?) of our many survival systems and creates maladaptive mechanisms we're incapable of controlling nor understanding yet.

Human beings fight or flee. However, I hear, time and again, people with akathisia deal with all 4: anger (fight), movement (fleeing AND fighting, both), suicidal thoughts and actions (the ultimate, final 'flee,') freezing (you absolutely know what I mean here--the terror gripping you and the inability to even leave the house, let alone your room), and "faint"--enter psychogenic seizures, perhaps? Real, absolutely real, but they can't see it in an EEG, can they?

So, all 4 survival instincts become engaged, not at the same time, but sometimes in stages--how? Don't know. Why? Some ideas, but nothing certain. Now, add to all that, a prefrontal cortex...

I felt so incredibly isolated. Totally alone. Just like you wrote, you can't talk therapy your way out of it or "jazzercize" it away. "Coping skills" are useless against it, but I still went into therapy, but the therapist had no idea or interest in what I was experiencing. I don't think he understood it. He began shaming me about my horrible thoughts, as if he believed I could control them if I tried hard enough. I believe the only thing that will stop akathisia is to stop whatever's causing it, whether it's the medication (for someone else) or the terrible job stress, like for me. I'd like to remain anonymous because I'm still carrying so much SHAME for everything I went through when I had akathisia, though I read that it's often misdiagnosed as "agitated depression." I know in my own heart I'm not a bad person, nor am I evil because of what I went through, how I lost my sense of self and considered taking my own life. I didn't value anyone or thing other than survival and even though I tried, therapy didn't help. The thing is, if I didn't have akathisia, then I had something that had the same symptoms based on everything I've read about it.

That isolation, that feeling of 'crazy,' self-blame and shame is where the prefrontal cortex does its worst, isn't it?

Human beings are so ill-equipped to accept their lack of control in the majority of their inner lives and outer world that we will go to elaborate lengths to make sense of the senseless.

Enter self-blame and shame. Because if it's your fault, you can most certainly make things right again. Yes? On a subconscious level, however, your brain's job is really quite rudimentary. Keep you safe, keep you alive. That's it. Oh, and change as little as possible while doing those two things (aka maintain 'homeostasis.')

What does that "look" like? You wrote "I feel like the only thing that stops it is to stop the thing causing it." Naturally. So, when people find out that the drug manufacturers know their drugs cause akathisia, the impulse is to stop the drug immediately. But you can't do that with most psychiatric medications.

However, psychiatric medications are only a few of the offending drugs that are known to cause akathisia. There are antibiotics, sleeping medications, OTC meds, SNRIs, benzodiazepines, anti-nausea and migraine medications, some street drugs, pain killers and the withdrawal from most, any, all the above.

So, we stop watching violent TV shows because the violence inside us is always there, threatening to devour us. We can't tolerate any emotional upheaval. We feel skinless and lose all emotional resiliency. We decide we have too much on our plates. ("I never finish anything I start..."), decide our jobs caused it ("Why can't I manage my stress better? I'm so weak, I know better than this..."), our financial stress caused it, ("I can't ever keep on top of anything, I'm so irresponsible. My grandmother was right, I'll never be out of debt, I'll never...") lack of love is to blame (Oh, this one would be a novel for how many ways society promises--and punishes--our romantic successes and failures), and lack of this or that; too much this or that.

And then, as we attempt to pare the many "reasons why" away, akathisia snakes its way around our softest, most bruised places and whispers evil lies to us that, based on our bodies' emotional states—repeat, our BODIES' EMOTIONAL STATES that are ALSO PHYSICAL—suddenly things make perfect sense. "So, it's my fault, then. I have love, so what's wrong with me? Look at all the many good things in my life, and I can't even be grateful for that because I'm selfish, I'm not good at my job, I'm unlovable, I'm broken, I'm doing this to myself..." on and on the evil chatter goes, finding other voices besides yours. The mean comments from girls in school. Your mother. Your former lover, you name it, your brain will find it.

Because in its maladaptive state, your brain's job isn't to think happy, positive thoughts about you. Its job is to make sense of the world around you and make sure, absolutely SURE, it's in accord with the world inside you. Your brain was doing its job. And how lovely the outside world agrees with us via ignorant MHPs and medical professionals. Yes, the isolation was, is, terrible.

They discovered akathisia in 1901 and they didn't have antipsychotics or antidepressants then. Just because mental health professionals are not aware of akathisia doesn't mean it isn't real.

Well, I don't doubt the phrase was coined in 1901, from Greek a-, meaning "not", and καθίζειν kathízein, meaning "to sit," in other words "inability to sit." If we look at the larger worldview and picture, though I think about how, at the turn of the century, it was commonplace for people to use opioids as a 'chemical intervention' for everything from emotional distress to physical ailments.

After all, opioids are described in a myriad of ways throughout ancient to modern history, but 'ineffectual' hasn't been one of them. And so, understand, akathisia is a withdrawal effect of opioids, among other medications and chemical substances.

Another unknown, unexplored possibility is interference with normal brain development as a child, such as a conk on the head at just the right angle and developmental stage/time. Also a possible factor, severe emotional trauma that, depending on the age, children were unable to process (or even remember, maybe).

So, back then, if and when akathisia did present, it's very likely they called it something else altogether. Or "…tragically, after a life-long battle with hysteria and other nervous disorders, she took her own life at aged..."

A French reformer, back in the 18th century, was considered a revolutionary in his day for his ideas on how to treat the "insane." He developed an ideology called Moral Therapy, or "treatment" of the mentally ill, which concluded that those who were insane needed care, attention, human connection, and highly-individualized approaches to help them achieve the end goal, interestingly, "becoming themselves again."

His reasons were personal. According to Wikipedia:

"A friend had developed a ‘nervous melancholy’ that had ‘degenerated into mania’ and resulted in suicide."

That sounds very much like akathisia, doesn't it? Doesn't mention the moving, pacing, though.

Interesting because in all the research I've done, personally, there are no mentions of clinicians/mental health professionals taking patient histories until the 18th century, and even less is mentioned about head trauma.

While they discovered late-stage syphilis as an "acquired" form of mental illness during this time in history, it didn't occur to anyone that a good bang on the noggin could do any damage. Especially since post-mortem findings didn't reveal any gross abnormalities in the brains of the afflicted. That was then.

We haven't come any closer. MRIs don't show certain types of brain injuries. PET scans and CTs are useless in detecting many TBIs, specifically if they happened a long time ago.

Paraphrasing my MD—a psychiatrist and neurologist who deals in movement disorders caused by medications: Most people walking around today with mental illness diagnoses are likely undiagnosed head injuries. The problem? No one knows enough about them to even bother.

The use of the term "concussion" to describe a head injury is akin to using "cancer" to describe…"cancer."

"What kind of cancer do you have? Where? What stage?"

"What are you talking about? I have cancer."

How absurd, and yet, why should brain injuries be any different? A common misconception is that you must lose consciousness to have sustained a serious brain injury. Not true.

Symptoms post-injury should lead medical professionals toward appropriate treatments, but they don't. TBI injuries are too-often mistaken for mental illnesses and treated with chemicals that cause more damage, which is what happened to me.

A brain injury isn't always an impact injury. It can be from a violent neck jerk, chemical (aka medications, gases--isn't that what mustard gas does?) as well as viral (hello, COVID-19), or an acquired brain injury such as having a stroke.

I just want to say thank you for educating people. There is very little information in the literature about akathisia other than the role antipsychotics play in it. But I believe people can get it through other means, so please remember those of us who had it from something other than medications.

Thank you for taking the time to write such a clear and moving message to me. Whenever I write of akathisia, I'm careful to only include my experience with it and the medications we know caused it, not out of a sense of "Yesterday, it was like this, and today it's different. Ergo..." because in the drug maker's own literature, in the boxed warnings, they list every, single side effect and adverse reaction to their medications.

They've known about akathisia from the beginning, and through clinical trials, but as of yet, there is nothing forcing them to disclose what occurs in clinical trials. It's only when enough people complain to the FDA about side effects and adverse reactions that a boxed warning is issued. I wonder who complains on behalf of people in inpatient facilities? The staff? Doctors? Families?

Doesn't matter because they've gone to the trouble of incorporating these adverse reactions and side effects into the DSMs to reimagine them as symptoms of the diseases. The DSM-IV changed with the DSM-IV-TR and the criterion for bipolar disorder now includes every symptom of akathisia.

I'd encourage you to read Saving Normal by Dr. Allen Frances. He's the former chair of the DSM-IV. While he still believes in his former calling, he makes it clear from his time and work that money, pharmaceutical-corporate agendas have taken the lead in mental health treatment, rather than MHPs.

That said, I only write of the condition, akathisia, as it impacts human beings, not the causes because, goodness, I think we've established I know nothing about that. ;)

Again, thank you for being courageous and generous in writing about akathisia. I found a good therapist who's willing to listen to what happened to me and learn about the condition.

That's a good start! Congratulations!

So again, thank you from the bottom of my heart. I just can't believe I found your article!

Again, thank you for your kind words. I hope I've shed a little more light on the "senseless, unknowable" thing that is akathisia. In all of it, what I have to offer is compassion for yourself and hope for change in the way we view—and treat—mental health.

The bottom line? When our brains stop doing their jobs, we don't survive. When it gets injured in any capacity--specifically in ways we're unaware of, still--we aren't able to function properly in society, and personally. And so I believe more attention to our food, our physical bodies, our minds, our communities, our expansion of the word "normal," our attention to what it means to be human--these are all vital to saving the many who write to me, still in torment, still being dismissed.

We must divest people of the notion that a pill will stop their emotional discomfort. And in your case, open up the possibility that you don't know why you had akathisia, but you did.

I'd like to urge you to learn how our brains function and their capacity to heal and recover. I'd like to stress, gently here, that we don't have much control over anything, but we can control how we choose to see things.

For example, if you believe that stress from your job really did cause akathisia, I can't imagine you'll ever feel safe in the workforce. So, tell me—what will your brain, your magnificent, endlessly creative brain do to protect you?

Looking back on your experience with akathisia, perhaps it's time to rethink your narrative. That you really don't know why it happened, but you believe it did. You don't know, really, what caused it, but you can learn about the limbic system, vagal nerve function, and how the gut-brain impacts so much of our bodily functions, it's almost breathtaking.

This is my softness to you, my hope. That if you learn about those things, you'll find a modicum of comfort and relief that something like job instability—a fairly consistent stressor in today's world—won't ever do that to you again.

Finally, I 'believe you found my article' because that magnificent brain of yours never wants to go through the experience of akathisia ever again.

That's what I believe—today anyway.

I'm always open to new information.

(P.S. don't bother Googling "beep beep lettuce." You won't find anything, and isn't that just... remarkable.)


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