Akathisia, the Millennial Plague: Death by Restlessness
Is someone you know or love dealing with depression, anxiety, bipolar disorder? Is that someone you? If so, the following information might be extremely important for you or someone you love.
Following this short “story,” you will find information on my upcoming poetry book, in her rest-less-ness. Feel free to skip to that. But I promise you, what follows impacts us all, even if you answered “no” to the above questions—and statistically, I doubt anyone answered “no.”
An American Dream: Happiness
Once upon a time, in a 1950-ish laboratory, a scientist discovered a medication that could help people who dealt with psychosis; specifically, those who suffered from schizophrenia.
The medication helped with the “positive” symptoms, such as: delusions, hallucinations, disorganized thoughts, and paranoia.
No more sedation. No more restraints. A medical miracle. And then…
…the patients—they began to move.
Move, shake, contort, muscles freezing, mouths contorting, tongues distending, words stuttered and slurred.
With the advent of film, the American public saw inside the institutions where lunatics paced and gesticulated and shook, the face of madness in black, white and then color film: a horrifying visual burned into the collective cultural attitude of what madness looks like.
But those movements of the insane on celluloid that horrified America were not the presence, nor presentation, of mental illness. The movements were caused by the drugs the mentally ill were forced to take.
***
Then, in a 1990-ish laboratory of a for-profit pharmaceutical company in the United States, scientists discovered another medication that could help people who suffered from psychosis, specifically schizophrenia.
Along with helping the “positive” symptoms, it also did something else: it stopped the shaking.
At least, that’s what they thought. That’s what they told us.
No more moving, shaking, muscles freezing, mouths, tongues, and words contorting and distending. A medical miracle. And then…
…the patients—they began to die.
Yes, the new medical miracle, second-generation “atypical-antipsychotics” (AAPs) stopped the movement—but they did not stop the neurological damage that causes movement. The drug simply masked the movements—until the drug was discontinued. Once off the medication, the movements appeared—the neurological conditions permanent, and termed “tardive,” meaning “late appearing.”
But the neurological movement disorders were not, and are not, fatal. No, the physical restlessness of tardive akathisia, the movement and muscular seizures of tardive dystonia, and tardive dyskinesia are not the culprits for the death toll.
The fatal side-effect was, and remains a secret in the industry, even today. A secret no one talks about: not the scientists, not the drug companies, and not even the doctors—if the doctors knew at all. The “restlessness” of akathisia doesn’t just affect the body.
No.
Informally, meaning those of us who know it intimately, the condition is called "inner akathisia,” the "subjective inner feeling of 'restlessness'" the medical literature passes it off as. And that "inner" restlessness is a whole different animal.
Rather than restless outer movement, inner akathisia causes feelings that the medical community terms: “subjective feelings of emotional pain.” Some people have both. Some one or two, and the movements are purposeful, repetitive, and can be controlled.
But the pain of it cannot. The agony cannot.
"Subjective feeling of unease."
A very clean, scrubbed definition. But the pain--it grows.
And it is a pain unlike anything you’ve ever felt before. Read more about akathisia on www.RxISK.org and their excellent article on akathisia HERE.
A quote from the article, from the RxISk.org website:
"Many psychiatrists who have tried antipsychotics have experienced this, and a number have said it was close to the worst experience of their lives."
It is this pain--the pain of inner akathisia--that is the fatal side effect, because the pain of inner akathisia is so unbearable, so agonizing, people would rather take their own lives, than live with it.
But no one talks about that part. Not for 60 years. Not for 30 years. Inner akathisia remains an elusive term, a bastard medical-malignancy no one is willing to acknowledge, even as their creation claims lives, daily, weekly...and no, there are no statistics. There are no numbers, calculating the lives inner akathisia has claimed.
There are only the dead, and they
cannot tell us,
because they didn’t know
the secret either.
All they knew was they couldn’t live with the pain caused by drug-induced akathisia for one more second.
And I know this because I have stood on that precarious, horrifying ledge. More times than I care to remember. No... I stand on that ledge.
More times than I care to admit.
***
But why should we be concerned about “psychotics?” The “mentally ill” who belong in a soft, padded room? What do they have to do with you or me?
We should be concerned because akathisia is not only caused by drugs given to severely mentally ill people residing in institutions. No, today, dozens of medications can cause akathisia. Most notably, antidepressants (SSRIs) and neuroleptic medication (SNRIs), and medications for anxiety, insomnia, nerve pain, nausea, and migraines.
And what is also stunning? AAPs are no longer dispensed to the “psychosis-suffering” schizophrenic. AAPs have been approved for use to treat bipolar, and even depression. Click HERE for a small sampling of what goes on in clinical trials w/r/t psychotropic medications.
What does that mean? It means that chances are, if you are reading this, you know someone who has something. You know someone who is ON something.
Or that "someone"...is you.
Although mental illness still suffers a modicum of stigma, we are becoming more and more aware and accepting in our society. This is a good thing. No longer ashamed, depression is discussed at your monthly dinner group. Bipolar disorder, bravely acknowledged by celebrities, and others who suffer with the difficulties of that mood disorder. Everyone has a Xanax. Everyone has a pill.
Mental illness, and the treatment of it, has become mainstream. Pop-culture.
But what they don’t tell you is this: akathisia is hiding in most of those plastic, child-proof-lidded bottles, the drug your doctor promised would lift the cloud of unhappiness from your life.
The antidepressant your brother takes can cause it. The pain medication your aunt takes for diabetic-nerve pain can cause it. The miracle “stop smoking” drug, and the new weight loss drug you see advertised on TV can cause it. Even medications for migraine headaches can cause it. The "booster" drug to make the ineffectual antidepressant you're taking causes it. Withdrawing from pain medications or anti-anxiety medications cause it.
While the movements don’t appear, because they are masked, the medications can’t mask inner akathisia—at least not forever. Only long enough for you to become physically dependent on the drug.
“Dependent” is not technically the same as addicted—dependent means your body—specifically your brain and its ability to function—incorporates the drug’s effects into its own, and suddenly stopping the drug can cause severe withdrawal effects that can even be fatal. Yet, even with tapering off the drug slowly, the withdrawals are horrific. Worse than alcohol, worse than heroin, and the withdrawals can last not weeks, not months--years. Even the rest of your life.
Once the drug can’t mask the pain anymore, once it grows—it is usually too late.
With other drugs, such as Chantix to stop smoking, or Lyrica for nerve pain, when inner akathisia hits the person taking it, and within a week, he or she becomes suicidal—the patient, doctors, family—they notice, and the drug is discontinued.
However, when a person with depression suddenly complains of worsening symptoms rather than improvement, their doctors routinely dismiss their complaint, up the dose of the medication, and do an add-on diagnosis of a co-morbid disorder that can naturally accompany depression, such as severe anxiety, a panic disorder, or they even change the diagnosis to bipolar disorder or other mental health disorders.
The diagnostics they order to determine this change? Unavailable. Nonexistent.
And this is the other secret they don’t tell you and it’s kind of a big one:
The pathophysiology of depression, bipolar, anxiety and even schizophrenia is UNKNOWN. It is not a “chemical imbalance” in the brain. It is not “too little/too much serotonin” or “too little/too much dopamine” or “too much cortisol” or “too frequent (or infrequent) misfires of the neurotransmitters.”
That is the secret, and the lie--the lie propagated by the mainstream vernacular of mental illness, and worse, the verbiage used by those who know of their own ignorance, but use the terms to justify prescribing these medications without disclosing the facts, and consequences, of their side-effects and possible long-term costs. That, and the medications' ineffectiveness in treating depression.
But how do *I* know that they don’t work? Who am I to say it’s a “lie?” No need to take my word for it. I know it because they know it. And they admit it:
“On February 26, 2008, PLoS Medicine published a meta-analysis that my colleagues and I had conducted on antidepressant medication. Most meta-analyses suffer from publication bias, which can happen when pharmaceutical companies withhold unsuccessful trials from publication. To circumvent this, we used the Freedom of Information act in the U.S. to obtain the data on all clinical trials submitted to the Food and Drug Administration (FDA) for the licensing of the four new-generation antidepressants.
“The results of our meta-analysis showed that people got better on medication, but they also got better on placebo, and the difference between the two was small. In fact, it was below the criterion for clinical significance established by the National Institute for Health and Clinical Excellence (NICE), which sets treatment guidelines for the National Health Service in the UK. Clinical significance was found only in a few relatively small studies conducted on patients with extremely severe levels of depression.”~Dr. Irving Kirsch
If you want to read about it further, check out the NCBI’s site—the National Library of Medicine and National Institutes of Health’s findings HERE.
Although they have linked a predisposition to certain mental illnesses to genetics, environmental factors, trauma and other influences, an MRI can only pick out the different colors of a depressed brain v. a content brain—they do not know why the colors are different.
Like walking into a doctor and telling him you broke something in your hand. Instead of ordering an x-ray, or even doing a physical exam, he asks you your family history, and then puts you in a whole-body cast, hoping the bones, wherever they are, get set properly.
That is literally the equivalent of the practice of Psychiatric Medicine as told to me by a psychiatrist, a new doctor, entering the field, horrified at what we—and they—DO NOT KNOW.
And the doctors who are supposed to know about side effects of the medications they so freely dispense do not know about inner akathisia, the “subjective emotional pain,” and so it is consigned or misdiagnosed as the patient’s condition deteriorating, or a new mental disorder altogether.
Am I anti-medication? Heavens, no. Am I anti-psychiatry? Not at all. I am PRO-information, and PRO-transparency with regards to the risks these medications pose, and the astonishing lack of knowledge by medical professionals about the symptoms of inner akathisia.
But the thing is...
...there is a lot of money in creating and manufacturing drugs. Specifically, psychiatric drugs. And there is no profit—specifically, there would be a huge financial LOSS--if inner akathisia were to be acknowledged officially. An even more horrifying conclusion? They have tried to find a treatment for inner akathisia, knowing they would be financially flush, because let's face it, people would pay $10,000 a pill to stop the pain of it, I guarantee you. Yes, the more horrifying thought is that they have been trying to find a treatment-- and there is none.
After 60+ years knowing what their scientists created in their laboratories, the pharmaceutical companies have never even tried to address their creation, their Medical Golem.
Simply put: there is no treatment…and there is no cure.
The only acknowledgement that akathisia exists from the drug manufacturers lies in prime-time TV commercials. Pay attention next time a drug ad comes on. Watch, listen.
“Lyrica may cause serious allergic reactions, or suicidal thoughts or actions. Talk to your doctor if…”
See the middle-ish bit? A drug that causes suicidal actions. ACTIONS. Once you act, there is no “talking to your doctor” or “lowering your dose.” When you act on suicide, you die.
So, after a few-ish years, post-1989, scientists in giant mega-corporations create drug after drug after drug, and these medications are being handed out like candy, not only by psychiatrists, but by family physicians, OBGYNs, even oncologists.
The pharmaceutical industry is a multi-billion-dollar enterprise. In 1987, America spent $2.8 billion dollars on psychiatric medications alone. Since then, mental illness diagnoses have risen exponentially in the past two decades. In 2001, Americas spent $18 billion dollars on psychiatric medications. We have more psychiatric medications available to us than ever before. Why are we getting MORE mentally ill? Ah, but with the advent of AAPs, in just 15 years, the numbers grew. By 2016, America spent $329.2 BILLION DOLLARS on psychiatric medications.
And the #1 cause of disability in America today...
is depression.
I'm afraid this is not the story's
And "happily ever after?"
A tragically quixotic prognosis.
***
Fun fact: I have never typed the word "akathisia" anywhere, and had it recognized as a valid word. It's been around for 60 years. Always underlined in red. An anomaly. A mistake. YOUR mistake, not theirs.
There is no single word to explain the experience of inner akathisia. Pain? A pale adjective, and not even close. Panic? Distress? Unholy, unbearable anxiety? Not quite. Feelings of inexplicable horror, terror, anguish? Getting warmer. Inner Hell? Dramatic, but very close. Ever been hurting so badly emotionally--you can't eat? You are actuallly nauseated? Yeah. That.
Every. Day.
There are so many ways to describe inner akathisia, that after having suffered with it unknowingly for a decade, and then finding out I had it in the summer of 2016, I had already accumulated hundreds of poems in my writings about, what I then called, The Pain.
Misdiagnosed in the 1990s, everyone seemed to have bipolar, me included, although now it’s believed that a “psychiatric medicine epidemic” occurred, the over-diagnosing of bipolar disorder, rampant. Even depression was—and is—over-diagnosed.
People would go into their family doctors, psychiatrists, or any other doctor or specialist, complaining that they were “depressed.” Instead of directing them to a therapist, who could then properly assess their need for pharmaceutical intervention, doctors began giving out pills, sold by the attractive pharmaceutical reps who came by the offices and told them of their miracle-wonder drug: Happiness in a capsule or pill.
Ignore those worrisome little zings in your arms, wrists, hands. Don’t worry about the jittery legs. The shaky feeling? Yes, part of the drug. Not to worry. Just a harmless little side effect. We've got another little pill for that pesky anxiety you feel now, too. Pay no attention to the niggling worry behind your mind's curtain.
Here's what is true: our bodies tell us when something is in them that should not be in them. Always. We've been trained to not trust ourselves, and instead, told to trust a piece of paper in a frame on a wall, and an oath taken to "First, do no harm."
Incentives were put in place to make sure the drugs were available. And so, the doctors prescribed: pills for depression, for insomnia, for anxiety, mood swings. The fix-all-your-ills-pills. Pills that would have long-term consequences.
I was put on an AAP 13-years ago, because I indeed had a mood disorder, but not bipolar. The problems I’d had started after sustaining a traumatic brain injury back in the late 1990s. But they didn’t even bother considering that possibility. Bipolar was the pop-culture mental-illness sweetheart of the day.
Within two years, The Pain hit me in my gut—my solar plexus.
I worked with a good, kind man, a very adept and knowledgeable psychiatrist who was at a complete loss as to why nothing worked to stop The Pain. I mean nothing.
On my end? I did everything I could--healthy lifestyle habits, eradicated caffeine from my diet, regular exercise, always making sure I got a good night's sleep, and abstained from alcohol. Therapy, meditation, yoga, mindfulness, vitamins, and I even purchased a Fisher-Wallace Stimulator (C) (Google it), and used it religiously. I was not--and never have been--a "doctor-fix-me” person.
We changed my medication to another AAP that we hoped would help what they called my "treatment-resistant depression"—but it felt more like an agitated scream of terror, fear, pain, and despair shuddering deep inside me, physical pain, yet it was emotional, abdomen hot to the touch--6 years ago. The medication was being branded (and FDA approved) as an antidepressant + mood stabilizer for bipolar disorder. A medical miracle, we thought, at last. We weaned me off all antidepressants that a former physician had me on, because my doctor knew the little secret: antidepressants do not help depression.
They are a whole-body cast on a shattered bone they cannot find.
It took over 12-years of living with the unbearable emotional pain inside me, and a new therapist, to determine that I’d been suffering, all those years, over a decade of my life, with drug-induced inner akathisia.
Diagnosed with drug-induced akathisia in the summer of 2016, I discontinued the drug as soon as possible. I was so relieved! It had a name! And The Pain—it finally, at last, would stop torturing my daily life, freezing me in place with terror, panic, and an inertia that had been shrinking my world so that I was basically home-bound, unable to socialize, even do small things like go grocery shopping; it shrunk my world, controlled every facet of it, and cast a pall of darkness that I cannot convey adequately here. I began withdrawing from everyone and everything. And then, finally: hope. It has a name. Surely, with a name, there is a way to treat it, fix it, cure it.
When I wrote this page's content, eleven months had passed, and not only had The Pain NOT subsided…
The Pain persists, and has gotten worse. In February of 2017…I began to move.
The “subjective feelings of emotional pain”—unbearable, even still, even as I write this. Because not only is inner akathisia a side effect, it is also a withdrawal symptom, as well as a sometimes "tardive," and chronic condition.
The only way to relieve the inner pain many days, is to move. Walk. Walk. Walk, faster, faster, pace, pace, pace, faster, faster…as if I could outrun my own torment. I began to allow the shaking and bodily movements to overtake me. My arms, hands, wrists, moving, at times I can’t control the movement of certain things and places on my body. I joggle my legs as I sit here and write. Walking, moving, shaking--allowing myself to move, it took The Pain down, just a notch or two, from "11."
The longest time walking, nonstop, from one end of my house to another: 5 hours, 45 minutes. Nonstop walking, sobbing, begging whomever would hear me, to please stop The Pain. I can take anything--anything else--just please, stop The Pain. Please. Please help me.
Finally, exhausted, I crawled up the stairs to get to the bedroom. Once there, I still couldn't rest. My body moved. My body moves. Even when I don’t move of my own volition, the muscles under my skin vibrate like hummingbird wings.
Oh yes, I’ve been to doctors.
One told me with a shrug, even after examining my gait disturbance, which even I hadn't fully noticed, that my cervical dystonia was simply "stiff neck muscles." I replied, "For 5 months straight?" She shrugged again.
Another neurologist told me I was suffering from "conversion disorder." That's a fancy way of saying I'm subconsciously faking it.
One way to rule-out the above, now called Functional Neurological Disorder, to appease those who don't appreciate being dismissed, is to examine the patient's sternocleidomastoid muscles, the muscles at the front of the neck.
Yes, because looking like a lunatic from a 1950’s film in an insane asylum was my new brand of “SEXY." Dumbshit.
You cannot, of your own volition, "flex" them without moving your head or face. But this neurologist didn't touch me. He didn't lay one finger on me. He didn't do one of the most fundamental ways to rule-out Conversion D/O. Why? Because two other neurologists did feel them. He simply read their notes, all concurring I was either mentally unsound or indeed suffering from Conversion D/O. Yet, these neurologists who pronounced the latter, after spending less than an hour and some change between them with me, also confirmed I was suffering from drug-induced movement disorders. Take a minute to wrap your head around that. I'm still trying to. Probably part of my "mental health issues."
Two years later, my sternocleidomastoid muscles are still, even now, steel rods. I can barely turn my head most days. Interesting how easily it came to them to dismiss the inner-presentation of akathisia, when in all the medical literature, the presentation of acute, tardive akathisia has been described by medical professionals as "...the dysphoria [of inner akathisia] has been associated with violent outbursts, suicide, and other strong affects such as fright, terror, anger, or rage."
One neurologist, a movement disorder specialist—a specialist within the specialty of neurology, who actually knew about akathisia—even the inner component of it, said she knew how debilitating akathisia was, but she only had medications that would possibly make me more suicidal. Didn't she get it?
I HAD NO ROOM FOR MORE.
And their consensus?
Yes, you have drug-induced neurological movement disorders, including akathisia. We can stop the moving, but the "pain"? That's a mental issue. Emotional. See a therapist. We can't do anything for you.
No medication, no way to undo the damage, stop the moving, shaking, contorting, muscles seized in a painful stasis for months--I don't remember the last time I could turn my head, steel rods have replaced my neck muscles--mouth contorting, words stuttered and slurred, my walk, once a lurch and limp is better, thanks to a new doctor who actually understands the effects of these medications. Yet, there's no way to help me except experimenting with more drugs that have other horrifying side effects. More distressing, there's no way to heal me. My new doctor finally did something that I hadn't realized would matter. On my permanent medical records, the truth, at last:
-Complications due to a TBI: ACTIVE.
-Drug-induced tardive neurological movement disorders: ACTIVE.
-Bipolar I disorder: RESOLVED.
But most significantly? They have no way, no medication, NOTHING, to stop The Pain.
Unbearable feelings, created in a for-profit corporation’s laboratory, a medical monster. Hundreds of people, suffering directly because of their creations. And all that pain and suffering…ALL…
…for money.
Oh, yes, I used to be cynical about the "evils" of corporate greed, appropriately "outraged." That is, until I became a victim of it. When it hits home, it's no longer an abstract--it's your life. And statistically, it WILL be, or touch, yours. It isn't "their" problem anymore. It's ours.
***
“Robin Williams had “therapeutic” levels of the tetra-cyclic antidepressant mirtazapine in his blood at the time of his suicide, according to the coroner’s report on his death, posted in its entirety by TMZ. In fact, the medication bottle was missing 8 pills. Williams had been prescribed the drug just 7 days prior to his death.
"Williams also possessed a partially-used prescription for the antipsychotic quetiapine, although this drug was not detected in his blood at the time of death. Williams was also being treated for Parkinson’s motor dysfunction, but it is not clarified if the condition was genetic or instead induced by use of antipsychotic drugs.”~ Rob Wipond, Mad in America.
How many other brilliant minds have we lost to this secret that’s been kept from us for 6 decades? I've suspected it. My favorite author, David Foster Wallace. I know akathisia took his life. Read HERE.
**UPDATE 10/14/2018**
I wrote this content in April 2017. Since then, I have come to find out that more than 15 people I know PERSONALLY, (a few, close family members), are experiencing akathisia currently. When they try to slowly cut back from their medications, the symptoms (as they are wont to do) get worse. "Proof" that the drug works? That's what the
doctors usually tell them. But no.
It's proof that you are now physically dependent upon the drug you were given by your most trusted source, your doctor, and continuing it, or beginning another drug is not proof it works, it's proof that continuing to take it temporarily stops the WITHDRAWAL effects of the drug you're attempting to discontinue. Akathisia is more prevalent than I even imagined. If the drug works, why is it that the person's anxiety/depression is worse when they try and come off the drug than when they got ON it in the first place? Medications for depression/anxiety were not, and are not, meant to be taken FOR LIFE.**
Finally--to those responsible for this particular brand of horror, hell on earth, the Golem that affects me, and all those who suffer still, whether personally, or from watching a loved one live with akathisia; for those who mourn the loss of a beloved person in their lives who could no longer abide the agony--a person who took their own life because of the creations you made in your laboratories, and with them, your unethical, insidious silence--
I make a solemn promise to you here, today: we are nowhere NEAR done fighting. Also, you should know--
I AM COMING FOR YOU.
~JACW 4/12/17
Sites Worthy of Note on Akathisia
Valuable information on what it is, what causes it, and resources to help you communicate with your doctor.
MAD IN AMERICA: Science, Psychiatry and Social Justice.
After Robert Whitaker's groundbreaking book, Mad in America, warned the American consumer of the danger and inefficacy of psychotropic medications, he stared a on-profit organization that has tons of valuable information.
RxISK :
Dr. David Healy's excellent site, RxISK is a free, independent drug safety website to help you weigh the benefits of any medication against its potential dangers. Peer-reviewed research, and other information that is invaluable to education yourself about when you go to the doctor.
The Inner Compass/ The Withdrawal Project:
A site and organization filled with helpful ways to safely taper and w/d of psychiatric medications, preferably with the oversight of a knowledgeable, supportive healthcare professional.
Katinka Blackford, documentary film maker, author, in London. She's written an excellent book on her personal struggle with akathisia. Need a reality check? Take a look at her page, chilling, and thought-provoking. Or...anger provoking: HERE.
Info blog dedicated to akathisia awareness
**DISCLAIMER**
I am writing of my subjective experience. In no way is this to be taken as medical advice or a reason to abruptly stopping medications. This could lead to serious medical conditions, complications, even death. Please, learn all you can, and see your doctor before stopping any medications, even if you feel you have akathisia.
However, if your doctor doesn't know anything about akathisia, or claims it isn't what you're experiencing, I encourage you to trust yourself, and trust what you've researched, read, and experienced. Follow your instincts: find a new doctor who knows his or her ass from his/her elbow, and report them to whomever you can so they are called to reckon for their gross medical arrogance and misinformation. They took an oath; hold them to it.