One of the side effects of the Covid epidemic has been a sharp rise in the use of antidepressants and anti-anxiety medication. A Market Watch study back in May of 2020, already showed anti-anxiety drug sales jumping 34.1 percent and a rise in antidepressants at 18.6 percent.
And I get it. To tell you the truth, I’m still feeling a little anxious myself. Maybe just a quarter of a Xanax? Cause this week I go to my local pharmacy to get the vaccine. And I know, why worry, right? Fauci says to get it. Biden says to get it. All my friends have gotten it and are beginning to look at me askance… am I paranoid, unpatriotic, a quack?
Maybe I’m just a little more hesitant about pharmaceuticals these days… even that little peach Xanax… ever since my son’s life was irrevocably changed by a medication-induced injury called “akathisia.”
When I first heard the word “akathisia,” it sounded like one of those Greek goddesses—the goddess Akathisia. Like Athena or Aphrodite, she’d be powerful, fierce, but maybe rather… moody? Well, I’ve come to know Akathisia intimately now. She is devastating, elusive, cruel beyond belief. And for two years I’ve been battling her for what I love most in the world. Because Akathisia can take an active, bright, successful, charming, compassionate, twenty-one-year-old, drag him down to the underworld, and make his life a living hell.
But let me step back and talk about akathisia from a calmer perspective. A societal perspective. Because this story is not just personal. It’s about America’s ongoing proclivity toward antidepressants, and it’s about Big Pharma. So, while I count down for my J&J or Moderna or Pfizer, let me tell you a little of our personal story and give you a sense of the larger story as well.
For my son, Marcello, akathisia appeared suddenly in the summer of 2019, after just a few weeks on antidepressants taken for garden-variety anxiety. Unusual? Not really. After all, 13.2 percent of Americans are on antidepressants. For women over a certain age, it’s one in four. Antidepressants are the third most prescribed class of drugs in America and an almost sixteen billion-dollar a year industry for the drug companies, who make over twenty-five thousand dollars per second on psychiatric meds.
If you have not taken one yourself, surely you have a friend or family member who has, and it’s likely they are doing well. But there is a percentage of people who are effectively poisoned by them. (In the simplest of terms, think of it like a peanut allergy.) The FDA claims it’s about five percent. Other sources, such as the Akathisia Alliance, an online research site, say it’s more like fifteen percent.
There are many “side effects” listed with antidepressants. Most people toss that little paper with the side effects, just as we ignore the warnings on TV commercials, maybe because if we looked too deeply, we’d never take the pill. But one of the side effects mentioned with antidepressants is “restlessness.” And that’s basically what the drug companies are willing to tell us about akathisia, that it’s an “inner and outer restlessness.”
Google it and you’ll also find “anxiety or agitation, feeling bad or depressed, distress and panic, a feeling of wanting to jump out of your skin, dark and unpleasant thoughts, strange and unusual impulses, often of an aggressive nature, homicidality, suicidality.”
What the drug companies’ warnings are not telling us is that akathisia is not really a side effect at all. It’s a whole new condition, a neurological as opposed to a psychiatric condition… caused by the drugs themselves. Akathisia is damage to the brain and to virtually every system in the body. Sometimes, the worst of it begins to subside when meds are discontinued. Often it does not.
Sufferers describe akathisia as “like having your blood replaced with battery acid” or “like being burned alive in a locked coffin.” They say it’s “like being violently tortured from the inside out.” Some psychiatrists will tell a patient their symptoms are “somatic.” But there are people with absolutely no history of psychiatric illness who get akathisia from a single shot of Reglan, an anti-nausea drug given in hospital settings.
Historically, akathisia has been intentionally induced as part of chemical warfare. In fact, Hitler himself played around with psych meds—and the quick withdrawal of those meds—as a means of torture. Do I sound like a conspiracy theorist? I’m not. I’m a mother who watched her son’s life change almost overnight, as he developed drug toxicity from antidepressants taken as prescribed.
At twenty-one, Marcello was a student at The New School in New York with an interest in climate science and psychology. Interestingly, he now sees akathisia as akin to climate change on the level of the human organism. He recognizes that our bodies were simply not designed to properly deal with the man-made drugs we’re putting into them.
While living in New York, he was spending a lot of time at the Hayden Planetarium as he’d always loved astronomy, and in New York, he really missed the stars. As a child in Oregon, he was always getting the neighbors to look up through his telescope in the driveway. He’d had gallery showings of his night sky photography as a teenager.
Now, a sophomore in college, he was asking the questions a lot of young men ask… Who am I, where do I fit in? So, he took his junior year off to think about those questions and travelled all over Europe. And when he returned from the trip of a lifetime, he went to see a psychiatrist because he was feeling kind of anxious about his next move. Of course, a lot of folks were feeling anxious. Trump was elected just as Marcello went off to college in 2016, and the collective diagnosis of “anxiety” in America soared at that time.
Still, in Marcello’s circle, his friends seemed to be thriving despite their anxiety… often with the help of antidepressants. His best friend become an overnight multimillionaire at twenty-one by coming up with a financial trading algorithm. He bought a Rolex and began buying a fleet of exotic cars. The American Dream? Big time. He was on Lexapro. Another friend was on Zoloft and thriving in the tech industry. Several friends were on Ritalin and doing great in school.
All his friends knew what they wanted to major in, what they wanted to be, who they wanted to be with. Marcello wasn’t so sure. He was diagnosed with “Generalized Anxiety Disorder,” the most popular diagnosis in this country, and he was curious to see if meds would help. After all, they seemed to be helping his friends.
When he got to our home in Los Angeles, he started seeing a highly respected psychiatrist, and took Cymbalta for just eight days. On the eighth day, he went camping near Big Sur with his other best friend. Karen is the antithesis of the male best friend with the financial algorithm and the cars. She’s a botanist, deeply connected to the natural world.
Marcello and Karen went for a day hike, and he missed a dose of Cymbalta. During their hike, the extreme “restlessness” and “inner terror” appeared for the first time. He recalls that it felt like being “acutely poisoned”, along with full body pain and vertigo. He thought he’d picked up some kind of insect bite on the trail.
They went to the nearest ER, where he was misdiagnosed with “heat exhaustion.” In hindsight, we know that he was experiencing a catastrophic reaction to the drug—a literal poisoning. Back then, we had no idea.
His psychiatrist switched him from Cymbalta to Prozac. He took it for two weeks. One night, after a slight dosage increase, he felt that same powerful inner restlessness—and a brand new kind of anxiety that was a thousand times greater than anything he’d experienced before. He couldn’t stay still.
We called his psychiatrist, who said, “Gee… this sounds like akathisia!” She pulled him off Prozac and prescribed Xanax, which, we now know, masks the symptoms of akathisia in the short term. He took Xanax for two and a half months, during which he embarked on a backpacking trip with friends near Mount Rainier in Washington. But he couldn’t do it. He wound up sleeping in his car instead of under the stars. He felt terrified, and physically, just really off. He came home to L.A.
Something was different and very wrong. He couldn’t go back to school in New York. He wanted off the Xanax, so his psychiatrist, whom I had great faith in, put him on a taper regimen for ten days. We now know this was extremely dangerous, that he could have died, and that he should have been weaned slowly over a course of at least a year.
But he did it in days, and the day after his last eighth of a pill, strange outward symptoms started to appear. Purposeless, repetitive movements as if he’d been set on fire. Weepiness. Pacing. Gruesome images and sounds in his mind and impulsive suicidal urges he’d never experienced before. Stroke like symptoms. The onset of tortuous nerve pain… and the beginning of a Kafkaesque journey towards a proper diagnosis.
Our first stop was a brilliant and compassionate physician and homeopath who gave Marcello a homeopathic remedy. It didn’t touch the symptoms, so we went back to the original psychiatrist. She looked at him like… well, like he was crazy.
A month earlier, on the phone, she’d said, “Gee… this sounds like akathisia!” But when Marcello went back to her, rocking back and forth, begging for help, she said it wasn’t possible to get akathisia from antidepressants. From antipsychotics, sure, but not from benign antidepressants. She thought whatever was wrong was “somatic” and suggested we get a second opinion. Meanwhile, she prescribed a succession of meds designed to help with the strange movements, all of which made Marcello worse. (We now know that adding medications only exacerbates akathisia.)
We saw a second psychiatrist, who agreed this was likely somatic and suggested another antidepressant, which Marcello declined, understandably wary now of meds. He also suggested that Marcello would benefit from a month at his outpatient clinic where he’d receive various therapies, along with yoga and mindfulness, for forty thousand dollars.
My husband and I were up for it. But, in addition to being in constant pain, Marcello’s sleep was becoming extremely erratic, and he absolutely couldn’t see driving across L.A. twice a day in rush hour traffic to spend eight hours at the clinic. He’d always loved cars, loved driving, but his sensitivity to light and sound were increasing to the point where just being in a car was becoming impossible.
A third psychiatrist observed Marcello’s movements and desperate state for five minutes, and immediately diagnosed akathisia. He regretfully informed us that the only “cure” was a high dosage of the potent antipsychotic Clozapine. He added that, though Marcello was not psychotic, he’d have to be hospitalized and closely monitored, as the drug could cause seizures, heart attack, lung clots, etc. But he assured us that the clinic where Marcello would be staying was so nice, he’d put his own daughter there.
The non-refundable fee would be a hundred thousand dollars. (One “side effect” of Clozapine he didn’t mention, but which we later found on the net, is “a feeling of restlessness with an inability to sit still”… aka akathisia.)
By this time, Marcello was researching akathisia himself and becoming more frightened of medications. So, we moved on to a famous “integrative” psychiatrist and came home with a dozen supplements, prescribed via muscle testing. Marcello was told to take them all at once, which turned out to be a disaster. Unfortunately, this psychiatrist, whom he liked a lot, was busy moving houses and couldn’t handle our many emails, so she suggested Marcello see a colleague who was “a genius at micro-dosing meds”—which, she assured us, would be safe.
The new psychiatrist was only seeing patients at a drug rehab where she was on staff. But since Marcello was experiencing “withdrawal” effects from the rapid Xanax taper, luckily, he was eligible for her rehab. We filled out the forms, packed him a bag, and headed across L.A. to the clinic, a run-down old Craftsman in a rough neighborhood.
It was staffed with alumni patients, recovering young drug addicts, and one of them gave us a tour. Marcello was kind of in shock and sat it out, but the young man’s story of rehab really moved me. If only my son were a drug addict, and not allergic to medications, there’d be so much help out there! But the micro dosing psychiatrist was… well, she was a bitch. Never looked up from her computer, never looked at my son.
The house reeked of cigarettes and Clorox, and, since Marcello was developing strong chemical sensitivities now due to mast cell activation—a side effect of the akathisia—we just didn’t have the heart to leave him there. So, we drove back home in rush hour traffic. Another two-hour assault on his injured central nervous system, which gave new meaning to the phrase, “Oh the traffic was hell.”
After the drug rehab, we went to a peaceful holistic medical clinic just a few freeway exits away. They were calm and reassuring and gave him intravenous vitamins. We went to a renowned Israeli trauma therapist who diagnosed “trauma.” We got to see the leading expert on “TMS” brain therapy who offered to zap his brain for a thousand dollars a go. Marcello saw a psychologist, via Facetime, who said he had “rage” and tried to get him to scream over Facetime. Another psychiatrist suggested CBT therapy. An Arab psychiatrist felt that joining his “community” would connect Marcello to his deeper self. And another psychiatrist suggested another med.
As he went from doctor to doctor, Marcello also got involved with a Facebook group called “Living with Akathisia” and a couple of other online groups like the “Benzodiazepine Information Coalition,” “Neurotoxicity and Toxic Encephalopathy,” and a group called “Cymbalta Hurts Worse.”
Frankly, “Living with Akathisia” scared the hell out of me. People were making videos of their akathisia experience that looked like horror films. After much input from these groups and a great deal more research on his own about akathisia, he decided unequivocally that meds were not the way to go. After all, meds had proven toxic to him, causing akathisia in the first place.
His friends and ours were also weighing in, some offering their own diagnoses. The mother of the best friend with the cars had spoken to a couple of psychologist friends who’d never heard of akathisia, so she thought it was a “fake disease.” Her son, who by now had ten cars and was traveling in a private jet, texted me that my son’s blood was on my hands if I didn’t commit him to a mental hospital.
One of the most promising doctors we encountered did indeed come through the friend of a friend of a friend. This doctor was an expert in a special kind of neurofeedback called Loreta. She practiced in a town an hour and a half from Los Angeles, but she assured us we were wasting money and hope if we were doing anything else, because Loreta was “the answer.” She made a connection with Marcello, she listened, and had deep compassion. I was hopeful.
Because by this time, the outer manifestation of Marcello’s torment was scaring us, and we were, indeed, considering hospitalization. My funny, wise, compassionate son was…gone. In his place was someone I couldn’t reach, someone in an agony I could not fathom, someone filled with terror and, sometimes, rage.
The Loreta treatment was based on qEEG scans of Marcello’s brain which showed “drastic abnormalities.” The doctor was convinced she could help but would only work with him if he also saw a “brilliant integrative psychiatrist” with whom she worked as a team. And since this doctor practiced in another town, my husband and Marcello moved to a town in between the two doctors for three days a week.
Then the Loreta doctor went on a trip to Costa Rica, broke her back in the shower, and could not treat Marcello anymore. Like I said… Kafkaesque.
We did continue to see the integrative psychiatrist who was an expert on the brain and had no doubt that Marcello had akathisia caused by medication. Marcello bonded with him because he was young and open and was willing to prescribe supplements, slowly, one at a time, as opposed to meds.
At one point, the psychiatrist agreed with some folks on the Living with Akathisia site that a certain strain of marijuana might possibly help. After a few hits, it made Marcello run out into the rain in what looked like a true psychotic break—but was actually the akathisia being severely aggravated by the marijuana. Marcello recently told me that it was the most horrific night thus far, as he’d been filled with powerful urges to kill both his father and himself, and that he’d spent the night outside in the rain in an orchard to be safe.
This might be a good place to add that, before medication, he’d never gotten into a physical fight, never had a suicidal urge, and had always had a warm, close, and playful relationship with his father, who slept in his room now to keep watch, and loved him more than life itself.
Marcello was becoming sicker and sicker, developing severe reactions to foods, to supplements, to chemicals in the environment. Mosquito bites now caused anaphylaxis and sent him to the ER. But every ER we went to, and we went to several, said it was “anxiety.” Each time, a kind doctor offered Ativan. Each time, we thanked them, declined, and left.
But one time was different. While my son and husband were waiting to check out of the ER, a psychiatric social worker who had examined Marcello, took them aside to another room. She said she could lose her job for telling them, but she also worked in a brain trauma center where she’d seen patients with akathisia who’d been put on a series of psych meds in hospitals… and, frankly, she’d seen their brains and bodies utterly destroyed. She quietly urged us to find another way.
Maybe the worst symptom of akathisia—for the parent, anyway—is “suicidal urges.” And, finally, after months of incessant torture, and medical gaslighting, our son made an impulsive attempt. It was not a “serious attempt” according to the integrative psychiatrist, but it was serious enough for him to take over and call an ambulance.
Marcello spent ten days in the psych ward at UCLA. I remember looking back at him through a series of locked glass doors at the end of every visiting hour, seeing him grow smaller and smaller as we walked away. This was not like leaving my child at pre-school or summer camp. Akathisia had him. The State had him, legally. And I couldn’t run back through the glass doors, pick him up in my arms, and whisk him away.
No two doctors could agree on a diagnosis. But they all wanted to give him meds. They didn’t agree on which meds, but they were prepared to get a court order to administer… something. Interestingly, the nurses, who have the most interaction with patients, recognized his akathisia and told him they see it all the time.
When someone goes to the ER in severe physical pain, they are their own credible witness, and everyone believes them. But you’re a whole lot less likely to be taken as a credible witness in a psych ward, especially if you have medication-induced akathisia, which can look like schizophrenia or psychosis.
Marcello recently told me that he was prepared to climb a barrier fence and jump off the hospital’s twelve-story roof in the event that drugs were forced on him, as it would’ve exacerbated the akathisia to a point that would’ve been “far worse than death.” And if he were to survive forced medication, he’d have to detox from the toxic drugs all over again, prolonging his recovery by years.
This was his thinking in the hospital, which I didn’t know about at the time. Cause he was barely speaking to me. Cause I thought he should give the docs a chance.
His main doc at UCLA said, “his irrational fear of meds was a sign of severe OCD.” And, to my eternal shame, I believed him over my son. Well, for a couple of days. After all, wouldn’t OCD be better than akathisia—for which there is no treatment or cure?
We had a family meeting with the doctors, in which Marcello was not treated like credible witness by the experts. I remember he wouldn’t look at me. This was particularly painful as we’d always been talkers. I’d always felt lucky to have a son who could go deep, who wasn’t afraid of feelings, who said what he thought and felt, to his friends, his teachers, and, especially, to his parents.
He’d always been funny, irreverent, and could make people laugh despite themselves. Teachers were a bit baffled, but admired him. I heard more than once, always with a sigh, “I think we learned more from him than he could possibly have learned from us.” And now we were here where no one believed him.
In retrospect, I think Marcello took that first pill to fit in. To tamp down the edges of a personality that felt more, saw more, questioned more, and spoke more truth. “More” than what was comfortable or convenient for others.
I remember his first psychiatrist calling me to run down the checklist for “bipolar” while he was sitting in there in her office. She just couldn’t make him “fit” into a DSM diagnosis. She was the mother of a son my son’s age, and I know she gave Marcello that first prescription because she wanted to ease his pain of trying to fit in.
When Marcello’s insured days were up, UCLA suggested he go to the one private treatment center which would accept him without meds… and if that didn’t work, he’d be sent back to UCLA where they’d get that court order to medicate.
He went to a private treatment center called Balance, near Malibu. I thought it was a lovely place. Good food, nice grounds, I was ready to check in for a nice rest myself. They “did not label him with a diagnosis,” they were interested in him “as a whole person.” With our insurance, we received a discounted offer for a thirty day stay at thirty thousand dollars.
All Marcello had to do was see their doctors and attend groups with other patients. But in the groups, he had to be still and attentive… which is impossible with akathisia. After five days of reactions to chemicals in the house, strict schedules he physically could not adhere to, and pressure to sit down and share like the other patients, (who were there for psychiatric disorders as opposed to neurological injuries), he ran.
Balance reported him “missing” to the police. He called to let us know he was “safe.” He’d fled to a hotel an hour away, and we raced over. We spoke to the people at Balance on the phone, and they advised us to let the police come to the hotel and take back him to UCLA. Marcello overheard enough to know the police were on the way, and he ran again. Shot right by me with the yellow backpack he got in Copenhagen on that trip of a lifetime.
I started screaming. The hotel maids tried to comfort me. My husband and I looked everywhere, but he was gone. Then the police came.
My husband and I had a decision to make. Help them find our son and cuff him and take him in a police car to UCLA to be force-medicated… or let our son determine his own fate. There had been a lot of moments over the past months that forced us to ask ourselves, “Who are you going to trust?” “Whose counsel can you rely on?” “Who do you believe, the doctor or your son?” This moment was the hardest.
Our son was now twenty-two. Nothing, nothing we had tried had worked to alleviate his suffering, certainly no med. We went home and prayed. By this time, we believed in nothing. But you pray anyway.
Oh, this is as good a time as any to mention we had received an eviction notice from our landlady because of all the noise in our house, and the ambulance and all, but I digress.
Marcello called from the airport and said he was about to board a plane to Oregon, where he’d spent much of his childhood. But that night he showed up at our house in L.A. As I mentioned, one of the main features of akathisia is extreme sensitivity to stimulation of any kind, so he could barely make it through airport security.
Still, the next morning, I went downstairs to his room and he was gone. We got a call from Oregon, where he hoped to find refuge until he could help us understand what he knew, and what he was learning from other long-term sufferers, about akathisia. There’d be no more running, no more threat of forced drugging. And, in hindsight, his father and I know this was the wisest decision he could have made.
At the time, however, Balance suggested we call a woman in the Midwest who could organize an “intervention” in Oregon and get him back to UCLA. We declined. Our son wasn’t crazy. His brain and central nervous system were not as well as they were before Cymbalta and Prozac and Xanax… But he wasn’t delusional, and he’d managed not to hurt anyone or himself, even when gaslighted by doctors and restrained, which was a miracle.
By now, he’d studied akathisia more deeply than the doctors who’d been treating him. And beyond all that… He was a human being. It seemed to me that to force anyone to take medication, (that the FDA classifies as dangerous), against their will, robs them of dominion over their own body and mind. What more basic right does a human being have? I couldn’t call the woman in the Midwest.
Since January 2020, Marcello has been in Oregon. He started seeing his old family doctor, who, ironically, has had two family members survive akathisia and thought he could help. When he first got to Oregon, Marcello was able to do more things for himself living in the center of a small town. The disabling akathisia was the same, but he felt safer, part of a familiar place.
Karen came to live with him. He started HBOT, (hyperbaric oxygen therapy), which didn’t help but didn’t hurt either. He could even meet a friend for a short walk near the Airbnb where he was staying. Then Covid hit.
Ironically, I was the original screenwriter of “Girl, Interrupted,” and as I write this, I realize it’s “Boy, Interrupted” for sure. A young man’s life is interrupted by some pills that promised to make life better. That’s what happened.
But the writer in me is always looking for some… meaning. If I can just wrest some goddamn meaning from what’s happening, I can deal. So when I look at what happened to Marcello, I think about what we are doing to ourselves as a culture—as we wrestle with the lure of the American Dream. The pills we need to keep chasing it. The greed on the part of the drug companies that fuels our discontent and encourages our striving.
And then, in contrast to the American Dream… there’s the pull of the natural world. It’s fascinating to me that Marcello’s two best friends happened to embody these two different pulls. And maybe it’s no accident that he started this chapter of his life in New York City, where you have to take a train to the planetarium, and has wound up in small town Oregon where you can just look up and see stars.
Akathisia is an incredibly complex neurological injury. But, according to experts in the field of neuroplasticity, such as psychiatrist Norman Doidge, author of The Brain That Changes Itself, the brain is really miraculous. If you remove the neurotoxicity—from the meds, from our processed food, from the chemicals in our environment—even a badly damaged brain can regenerate.
If you then give the brain what it needs—real food, pure water, clean air, low stress—it can heal. And aren’t these the things that all humans need? Not to mention the poor planet? Might this be some bit of meaning we can wrest from the pandemic?
Marcello and I are telling this story in the interest of furthering “informed consent.” Because if this could happen to him, it could happen to anyone. At this time, the only conventional “treatment” for akathisia is more medications which cause akathisia. Sufferers talk of being “polydrugged”—given one drug to offset the negative effects of another—and they liken it to using gasoline to put out a fire.
They are not being cured, and, because the condition is so terrifying to others, many sufferers lose their families and friends. This loss drives many to suicide. And again, these are mostly people with no history of attempted suicide before taking medication. They don’t want to die, they just want the anguish of akathisia to end. But what about people who do have mental illness and develop akathisia on top of that? What about people of color, or poor people, who don’t have access to information and support—what the hell kind of shot do they have?
Here’s what haunts me: Could hundreds of thousands of suicides have been prevented if people had had “informed consent” before starting meds?
What might informed consent entail? There is a major Australian study by Dr. Yolande Lucire and Christopher Crotty entitled “Antidepressant-induced akathisia related homicides associated with diminishing mutations in metabolizing genes of the CYP450 family.” (Whew.) Based on over a hundred and twenty subjects, the study shows links between both suicides and homicides in akathisia patients who have the CYP450 gene variation.
The authors state that “prescribing antidepressants without knowing about CYP450 genotypes is like giving blood transfusions without matching for ABO groups.” They conclude that it’s essential to look into a patient’s genetics before prescribing. So. What if our son had had the proper tests, and someone with the training to interpret them, before being handed his prescription?
The Australian study notes that drug companies actually reject people with the CYP450 variation from their trials. They know that for these people the drug will be toxic, and they don’t want these folks to “contaminate” (lower) the success rates in their studies. They do not, however, warn the public about the dangers associated with this gene variation when the drug is marketed. (Yes, this is actually allowed.)
According to the Australian study, psychiatric drugs are “prescribed by clinicians educated by drug company representatives and key opinion leaders who receive substantial benefits from the makers of these drugs.” So, in order for the patient to be fully informed, the psychiatrist has to be fully informed… And does a multi-billion-dollar drug industry really want that?
Ultimately, the best way to treat akathisia is to prevent it from ever happening. And we know the pharmaceutical industry does not want that.
On August 19, 2021, Marcello will be two years off of any medication, after having been on meds for a total of three and a half months. He can’t drive, can’t focus on a movie or TV, can’t listen to music or read a book, can’t tolerate the foods he used to whip up into incredible meals, can’t hike or climb mountains.
His sleep has been disrupted by a potentially permanent circadian rhythm disorder called “non-24,” which basically means it spins around the clock, an hour or two later every day, if he is able to sleep at all. Every hour he’s awake is devoted to surviving the moment-to-moment torment of akathisia.
Karen, the friend he grew up hiking and camping with, was with him for seven months. When she left for a job in San Diego, his dad and I moved to Oregon, as he can’t live alone. He needs to apply for disability, but, with the disaster wrought by Covid on millions, his chances are slim.
And if he were to contract Covid? It’s not likely his system could handle it. His doctor doesn’t think he could handle the vaccine either. Which is why, despite everything we don’t know about the long-term impact of the vaccines, and everything I’ve learned about Big Pharma, you bet I’m going for that shot… to keep him safe.
When Marcello describes akathisia, he says one of the most insidious effects is that it has completely hijacked his ability to feel anything good, anything human. Yes, he can see the stars in Oregon, only now they overwhelm and agitate him, a cruel reminder of something that used to evoke wonder. Same with people. He knows he loves us, loves Karen, he just can’t feel it.
So, no, I can’t talk about a “happy ending.” Not yet. We hold fast to the research that says that in time the brain does heal. If I can’t slay the goddess Akathisia, I’ll just have to outwait her.
Meanwhile… Marcello has managed to write and produce a PSA for The Akathisia Alliance which you can watch right here. He’s a whistle blower in the making, speaking about akathisia on social media and to anyone who’ll listen. He’s not just passionate about getting this information out there, it’s what he lives for.
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.
How ironic the woman who wrote “Girl, Interrupted” allowed her son to take a psych drug. “Artist, Interrupted” has been among the titles I’ve considered for my tale. ‘Been there, done that,’ was what came to my mind, as I was reading through your son’s symptoms.
But do have hope, and give your son hope, since time (and the neuroplasticity of our brains) does heal the psychiatrists’ harms. I’m living proof, I’ve been psych drug free for about twelve years now. And the only adverse effects of the psych drugs I have left are a wiggly ankle when I wake, and brain zaps. And in as much as the brain zaps can still be annoying, I’ve learned to control them, and I can brain zap headaches away with them in a NY second.
And, indeed, the psychiatrists do need to learn that – at least a percentage of the population – is allergic to their anticholinergic drugs. Thanks for sharing your son’s harrowing experience, Lisa.
Lisa, whenever a substance causes us harm we can make a homeopathic remedy out of it to undo the harm. Thank that’s crazy? It’s not. I’ve done it about 5 times so far. Go to ElaineLewis.com to read about it and watch Elaine’s tutorial so you can cure the akathisia. And, BTW, when my son was “incurably” mentally ill with so-called “bipolar with psychosis,” I used an approach called “orthomolecular medicine,” (which is easy to learn) and tapered him off of three daily antipsychotic drugs. He’s been well for years. Elaine knows really effective remedies for your son’s anxiety and depression. –Linda, author of The Secrets to Real Mental Health by Linda Van Zandt. I also have 3 videos on Youtube about it at “Linda Van Zandt’s Mental Health Recovery Channel.” (Linsant 99 at Gmail.com)
That was so hard to read as it parallels my own experience so closely.
I am so sorry for your son. I was treated with antidepressants which propelled me into a horrifying mixed state several times, was then subsequently treated with all sorts of other drugs to medicate my created side effects…
Long story but I also spent three months on a psychiatric ward after ketamine infusions backfired so spectacularly that they very nearly killed me, and the antipsychotic quetiapine has wreaked havoc with me and I am left with residual sleep problems and headaches weeks after a very very slow taper! Hideous indescribable nightmare that no one should have to go through!
I thought as a guy who’s ‘been there’ that you, or your son, or both, might like to read about my story and I will obviously support where I can…. I have found a way out of the misery (well very nearly anyway)… details are here http://www.dyingtostayalive.com
Please get in touch (contact form on the site) if you need help or support or if I can do anything else to help you!
Tom Robinson, Oxford, U.K
MIA, sorry to say, you let your readers down to let something like this being posted. https://pubchem.ncbi.nlm.nih.gov/compound/Duloxetine-hydrochloride (Cymbalta). Your readers, being victims of poison as medicine, still get being told that “they THINK they are being poisoned” while it is a allergic reaction to the medicine. These medicine are not medicine they ARE poison (see link) and the people that you have your site for get poisoned instead of thinking they are. As far a the parents and sufferers think that it’s about informedness and they would have made a differrent decision, the informedness so there so you don’t have any damages to claim if disasters strikes (which is always does, it’s poison). Clearup the tune, tell your people they are getting poison and not a medicine. Or maybe MIA doesn’t need to survive, as does the rest of your readers.
i think you misread the article.
Thank you Lisa for exposing the racket.
It harms not just the person, but the family.
I don’t think ANY of these drugs should be on the market.
They are harmful and need a complete removal.
I am really sorry this happened to your son, it happens to many.
The media pretends it knows nothing because psychiatry owns them.
Psychiatry owns our governments, there is no separation.
As far as his sleep, I would implore you to have someone take him
on a camping trip.
Where he is there at minimum for a solid week, hiking and doing physical things.
No computers or limited cell phone.
Hopefully he could do it for 2 weeks.
It can reset the rhythm. I read about a study a doctor did and the treatment
really works and costs little.
Of course we are dealing with the injury, but it’s still worth a try.
Please give it an honest shot and if it does not help the first time, perhaps
try again another time.
i read your article with interest. You have packed so much into this article. I am sorry for what happened to your son. And unfortunately, he is not the only person who has to deal with this terror and it is terror. I know from personal experience. I am now in what I call the adaptation phase, as each day I am trying to learn how to deal with my life after these drugs. I think someone wrote that they are poison. I think I concur. Sadly, we are convinced to take these drugs, because we are told they will make our lives better. However, they begin with one or two and then start piling them on to deal with the effects these drugs cause. This is why there are those who are beginning to think if there is mental illness, it is drug-induced. Some of the same things your son has experienced, I have also. I do not read books like I used to years ago. My sleep rhythms can be very strange at times. We know these drugs do cause brain damage. The question is how is the brain damaged and what are the effects? A lot of this is hidden from us. Here are a few things I do. I avoid shopping, except online with delivery by post office, delivery person, or friend or family member. Shopping drives me to distraction. Honestly, it took a pandemic for me to realize how much horror it caused me. I don’t read like I used to. I selectively read and sometimes it’s even from a book made for children. Here is one thing that has helped me a lot. I don’t know if it will help your son. It may or may not. It is drawing. Drawing with just a No2 Pencil and sometimes “coloring” my drawings in with colored pencils helps immensely. I would suggest that if that is something he wants to do, that he start with “how to draw” books that are written for children to learn how to draw. For me, drawing allows to me to order and organize my tattered and sometimes cluttered brain. It also helps with what I call “telegraph brain.” That happens for me in that my brain will think an idea or sentence then stop (like the old telegraphs used to do) It will do this repeatedly and I need to stop it before it gets out of hand. Drawing is one way that Helps me to get control of it. I wish you, your son and your family the very best. Thank you.
Dear Lisa, Thank you for sharing your story and Marcello’s. It’s one of the most heartbreaking reads about using psych meds that I’ve come across. You detail the journey so perfectly–that as parents and patients, we have to trust people who seem uninformed themselves, and certainly, when they don’t believe patients, they disempower people.
I totally agree with you that no one would be drugged against their will, and when people are “noncompliant” with meds, they must have a very good reason–probably self-preservation. No one should have to go through what you have as a family, and I am so sorry for Marcello’s pain. I wish that you’d send this essay to every doc and therapist who “treated” your son so they could face the awful harms they’ve inflicted.
These drugs should be deemed a health emergency to be taken off the market yesterday.
There are no “side effects” they are ALL effects.
Actual doctors should NOT be involved in worsening people.
This letter should be distributed to every general practitioner, no point in sending it to shrinks.
It’s rather funny how they NEVER deny “mental “symptoms” in healthcare, BUT WILL deny actual harm symptoms from the drugs. Doctors are quite willing to tell you that your headache is not there, but never will they say your anxiety is not there.
Medical care was much better, much more scientific before the advancement and infiltration of psychiatry into the field of an area where they had no business being.
But if you can’t cut it as an actual doctor, better become a shrink. Easy money, no science.
“But if you can’t cut it as an actual doctor, better become a shrink. Easy money, no science.”
I actually think it’s time to stop demonizing individual psychiatrists. My former therapist once asked me if I thought my psychiatrist had at least meant well even though the polydeugging for years did so much harm. And the answer is, of course she meant well. I think most psychiatrists do go into the business with decent intentions. But this is beside the point. A red herring and a distraction from dealing with the harm being doled out on a systemic basis.
The real issue here isn’t that psychiatrists are bad people doing harm intentionally. The issue is that good people are unwilling to see the evidence of harm being done. It isn’t about individual patients and individual doctors. It’s about a statistical picture that doesn’t add up. If the drugs are therapeutic treatments, why do so many continue to get sicker and less functional the longer they are on them? That’s the pressing question, not whether or not individual doctors and treatment providers are basically good people. (To be clear, there are plenty who aren’t but that’s also a distraction!)
i would like to gently disagree.
yes, it’s a systemic issue. and yes, i doubt that many people go into psychiatry and psychology with the intention to do harm. but if the information is out there, available to all, stories of the harm done, articles, websites proliferating left right and centre, and if you and i can work this out, but if it continues to happen, as documented above, all these ‘professionals’ who, regardless of their intent, did harm, exacerbated harm.
and if there’s no accountability or responsibility taken by anyone – what will stop the next child or adolescent or adult walking out of their doctor’s office with a diagnosis and a prescription that, for some, will totally ruin their life? i keep wondering why on earth should this abomination be allowed to continue and what will stop it.
“The road to hell…” as they say. Good intentions in a damaging system usually leads to either the person quitting or being coopted into doing things they know are wrong. The system needs to change. Changing the personnel without changing the model just leads to more of the same.
the story of your family and son’s experience is really heart-breaking but I believe it is adding to the momentum to change current practices, maybe more so outside the USA initially, then hopefully inside it. MIA is an excellent source of information and as a health practitioner myself I am trying to change the culture of my work place to avoid the terrible use of these medications for conditions of mental and emotional distress for which there is very little unbiased evidence of any benefits and slowly increasing knowledge of severe harms. Through the work of the health professionals and people with lived experience who have set up and contribute to the MIA site the message must slowly but surely be getting out. Also the WHO is now proposing the limitation of forced treatment as mentioned in recent article by Robert Whitiker. “Guidance on Community Mental Health Services: Promoting Person-Centred and Rights-Based Approaches.”
Please also keep praying for your son – these experiences can, as you are doing, find meaning in being turned into advocacy to change the very harmful current medication practices of the psychiatric profession and hopefully preventing harm to others in the future.
Thank you Lisa, and thanks to Marcello, for both of you having the determination to increase knowledge and awareness of the tragedy of AKATHISIA, and its vulnerability to be misdiagnosed as ‘serious mental illnesses’ such as psychotic depression; leading to further exposure to AKATHISIA inducing prescription drugs.
I found your narrative painful to read having lost a beautiful and charismatic young adult ‘child’ to serially misdiagnosed AKATHISIA, and multiple long term adverse drug reactions. Despite great courage, resilience and much recovery (supported by an expert who confirmed that there was never any ‘mental illness’), we still miss and grieve for the joy of the wonderful person that was there before the cascade of drugging.
AKATHISIA has been increasingly reported as a serious adverse drug reaction which has been known for over thirty years.
It has been repeatedly published that, in drug trials, AKATHISIA has been coded as ‘Hyperkinesis’, ‘Emotional Lability’, ‘Nervousness’, ‘anxiety’, ‘agitation’ et al — Thus diluting the signal of a serious adverse drug reaction.
I am re-reading “Prescription for Sorrow” by Patrick D. Hahn. Samizdat Health. It adds to my understanding of the AKATHISIA tragedy, as do all of the books from Samizdat Health.
I am glad the author addressed the CYP450 variant connection. While I was tapering psych meds, I tried CBD oil and had a worsening of symptoms that I now realize was akathesia. I learned that CBD blocks CYP450 genes that process Effexor and Mirtazapine, the other med I ended up on after protracted Effexor withdrawal. I experienced akathesia when I first came off Effexor too quickly. During that protracted withdrawal, a p-doc put me on Viibryd and it threw me into akathesia big time! The low entry level dose didn’t do much but then she upped me to the next dosage and that did it – I immediately came off of it. But that wasn’t the end of the toruture, because I was still in withdrawal from Effexor. I was taking 5-htp and Sam-E as substitutes for Effexor and that was causing a low level of serotonin syndrome that kept the akathesia going. It took a very progressive DO p-doc to help me tease apart what was going on, but ultimately he put me on mirtazapine because I couldn’t sleep or eat, and after 6 weeks of that I ended up back on low dose Effexor. Then I began a five year slow taper to get off both meds with the help of SurivingAntidepressants.org. I feel fortunate that I didn’t enter the medi-go-round nightmare as so many do, because I’m sure it would have destroyed me. I can fully relate to “not wanting to die but not wanting to live THIS WAY,” and it could have been so much worse! I’m two years out from meds, now, and I can’t say that life is all rosy, with anhedonia having been a major feature of recovery, it is slowly getting better. However, I am cognitively hampered and don’t have the confidence to get a job because I forget things so easily. Yesterday I saw someone out of context that I had met before on a few different occasions, and when she said “Hi Betsy” I said “Have I met you before?” I honestly didn’t recognize her and had forgotten our previous encounters! This is one of the most distressing signs of brain damage for me. I wish I had never popped that first Prozac 26 years ago that got the ball rolling, with the promise of making me “Happy!”
I truly feel for Marcello and believe in neuroplasticity – it just seems to take a long time to recover.
betsycam, Yes I agree. If I had not taken those first psychiatric drugs so many years ago. I have even forgotten my “gateway” drug because there have been too many. Thank God I do not take those evil toxic poisons any more. I wish you well, Thank you.
Lisa, what a compelling story. Thank you for sharing your and your son’s harrowing journey. I am glad to hear that he is healing and I hope his PSA is widely disseminated. I’m not one to be star struck or fawn over Hollywood types but this narrative is a nice change of pace from the constant “mental illness”, anti-stigma, NAMI-promoting narratives that seems to come at a slow drip from that quarter at about the steady and maddening pace of Chinese water torture. I hold hope that your bravery in sharing a counter narrative to prevailing beliefs will encourage others in your circles to show the same.
As someone who also has the mutation to the CYP450 (A34) phenotype that causes slow metabolism of most of the psychiatric and many of the other popular drugs on the market, I sympathize with the frustration that doctors make little effort to ascertain their patients’ genetic status before prescribing. And it should be noted that many drugs that were previously available by prescription but are now over the counter can be similarly dangerous if one is unaware of their genetic status and presence of certain genes or mutations.
The other big one that I’m aware of that effects certain drugs is the APOe genes that effect Alzheimer’s risk. Those of us with one or more APOe3 or 4 genes are at greater risk of hemorrhagic stroke when taking blood thinners and these drugs should only be given when their necessity is absolutely certain. I’ve been given these drugs on suspicion of heart attack (warfarin, specifically) when I’m at high risk of stroke as a result of their use. But ER doctors dole them out to anyone and everyone without knowing the harm they may do to any given patient. Given my father’s history of several hemorrhagic strokes, I’d rather not risk going to the ER for chest pain that might be benign because each time, due to abnormal heart rhythm, I’ve ended up on the telemetry or cardiac units being unnecessarily pumped full of warfarin when I’m not having a heart attack. But again, well meaning doctors can do great harm when practicing medicine as usual and so knowing your own genetic status can become a life or death kind of thing. I’ve largely decided it’s safer to stay away from conventionally trained physicians as a result. At some point, you have to risk looking like a crank in order to protect yourself from the people who are supposed to be healers. I applaud you for taking that risk, here.
One last thing, if you believe your son needs disability, do NOT wait to apply just because you think he will be unlikely to get it. Social security has a cutoff of age 23. Those aged 22 and under on the date they first apply are considered to be minors and their monthly payments are based on their parents income. I applied about six months after I turned 23, and despite evidence of my disability going back to childhood, my payment was calculated on my adult work credits and hence I lived in abject poverty on SSI for the next decade until my now husband and I began dating despite my father having been a high earning career federal employee. So I implore you to file early, and then appeal any denials. One severely disabled person I knew took 8 years to get approved and then got a several hundred thousand windfall when they were finally approved on their half dozenth appeal. But unless you’re certain of your son’s ability to eventually support himself and your own ability to support him until that time, it is wise to apply before the age cutoff to ensure he receives benefits based on your and your husband’s work credits.
P.S. for those interested in a more thorough explanation of how these specific genes can influence metabolism of common drugs, this article gets into a lot more detail, especially regarding how some drugs can be both inhibitors and inducers of metabolic enzymes and create individual as well as drug-drug interactions. https://www.aafp.org/afp/2007/0801/p391.html
It’s also important to be aware that many popular herbal remedies (like turmeric/curcumin) are powerful cyp450 enzyme group inhibitors/inducers.
There are some things we need to be cautious about when it comes to these genetic testing and metabolism theories regarding psychiatric drugs. You may have addressed this in other comments, but I will make a few points here for discussion.
We have to be VERY CAREFUL that Big Pharma and psychiatry do not use this science about genetics and metabolism as a way to actually EXPAND their prescribing of psychiatric drugs. Example being: they do the testing (and makes tons of money on testing) and then prescribe like crazy to all those not testing positive.
There may be some people who are genetically more sensitive to psychiatric drugs and will have the more extreme “akathisia” side effects etc. BUT that does NOT mean that on some sort of continuum of effects, millions of others will have various lesser levels of “akathisia,” AND a host of other negative effects from psychiatric drugging.
We have to make sure we expose the totality of harm done by these drugs when discussing or promoting these genetic tests for metabolism issues with psychiatric drugs.
I agree, testing for those with “extra sensitivity” could easily be used as an excuse for not facing the fact that the drugs themselves are systematically destructive and don’t actually “treat” anything, any more than drinking “treats” anxiety by interfering with a person’s inhibitions. (Someone recently shared with me a study on using laughing gas to “treat” depression! The idea of it made me laugh out loud!)
That being said, I do think it’s good for the common person to know that such genetic vulnerabilities do exist and to insist that doctors check for these before prescribing them random drugs. Apparently, the genetics affect a lot more than just psych drugs, and people who have this particular vulnerability deserve to know about it.
“Someone recently shared with me a study on using laughing gas to “treat” depression! The idea of it made me laugh out loud!”
Now, that’s a gas!
First, let’s separate out fact from fiction.
“There are some things we need to be cautious about when it comes to these genetic testing and metabolism theories regarding psychiatric drugs.”
“We have to make sure we expose the totality of harm done by these drugs when discussing or promoting these genetic tests for metabolism issues with psychiatric drugs.”
To be clear, I’m not speaking only about psychiatric drugs. I specifically stated pharmaceutical, over the counter, as well as herbal substances – many of which can have significant medicinal effects to be cautious and aware of. And these aren’t metabolism theories. 90% of the most widely prescribed pharmaceuticals are metabolized by six liver enzymes in the cyp450 pathway (https://www.biorxiv.org/content/10.1101/640540v1). Roughly 8% of Caucasians and slightly higher numbers of Black and Hispanic people have one or more mutations to these SNPs that make taking many of the available drugs (RX, OTC, & herbal) a potentially dangerous proposition. So to reiterate, this is not limited to psychiatric drugs. This is real known science on how the human body metabolizes chemical substances.
The private companies pushing expensive limited genetic tests aimed at psychiatric drug users in a crude attempt to mimic “personalized medicine” are total scams in my opinion. I didn’t and would never suggest such a thing. (I’d also never suggest someone start taking a psychiatric drug in case that isn’t clear from five years of my comments here.)
The direct to consumer DNA tests like Ancestry and 23andMe both provide raw data files so that the user can view their genetic data at the SNP level (with help from one of the many apps that decodes such data and interfaces with SNPwiki) to provide information about each SNP individually. It costs less than $200 for the test app and the user has almost their whole genome rather than just a couple of SNPs.
“There may be some people who are genetically more sensitive to psychiatric drugs and will have the more extreme “akathisia” side effects etc.”
It doesn’t quite work that way. You can have multiple poor metabolizer mutations or you can have a mix of poor and rapid metabolizer mutations or you could have multiple rapid metabolizer mutations. This is the part where it gets tricky and there can be dramatic drug-drug interactions because the drugs themselves can further inhibit or induce the production of these enzymes.
“BUT that does NOT mean that on some sort of continuum of effects, millions of others will have various lesser levels of “akathisia,” AND a host of other negative effects from psychiatric drugging.”
Of course it doesn’t and I’ve never suggested it does.
This information has implications for oncology patients, cardiac patients, chronic pain patients, those with various infections, etc. The fact that a portion of us are more likely to have severe reactions to pharmaceuticals and other chemical substances doesn’t change that other people can be and often/usually are harmed to some extent by these drugs.
It isn’t a contest. Nobody is gunning for the title of most harmed psych survivor here.
Although there may be valid science behind this, right now for anyone, particular if one has had a history of exposure and experience, at the hands of psychiatrists, etc. is beyond dangerous to get one of those genetic tests. Ancestry and 23andMe have been called out to selling or giving our their data on those who subscribe to those tests to “who knows who.” One’s genetic markers need not be out in techno space for the highest questionable bidder. That is my main complaint. I, honestly, don’t know enough about the genetics to comment. After all, I can’t actually be intelligent enough as I believe in God and Jesus. Huh? Thank you.
Removed for moderation.
Rebel, you say:
“Ancestry and 23andMe have been called out to selling or giving our their data on those who subscribe to those tests to “who knows who.””
I’m not as familiar with ancestry as I am with 23andMe. There are strict opt-in procedures on 23andMe for the release of aggregate (de-identified) level data and participation in research. There is the option to not participate at all. And there is, of course, a possibility of a data breach. I made a calculated choice to obtain my genetic information because I felt the benefits of having that information outweighed the risk. So far, that has continued to be the case.
There is a 2008 federal law on the books prohibiting the use of genetic data from effecting health insurance as well as employment. There are a handful of states who have further protections enshrined in their laws pertaining to discrimination in other areas like housing and education based on genetic data. Ultimately this is civil rights matter and Congress needs to strengthen the protections for those whose genetic data is already in “techno space” as you put it. The genie is out of the bottle. And it’s not even a matter of personal choice in some cases. Many states and localities take a genetic sample of all accused suspects – many of whom are of course innocent of the accusations against them. Federal courts have upheld this practice. Genetic tests have been in used for decades to establish paternity. This is not something that is going away because some people don’t participate. So again, the answer is to demand that Congress strengthen the laws already on the books pertaining to the legal uses of genetic material.
One of the concerns people have about the misuse of genetic material is how it’s being used by law enforcement. I’m of mixed minds about that. I certainly don’t object to the fact that a couple of serial killers and other career criminals have been identified via these sites due to their relatives’ use of genetic sequencing.
A larger concern I have is the patenting of individuals’ genetic data, most notably in cancer patients. This was an issue well before the direct to consumer genomic sequencing test became a thing.
Are there risks of dystopian abuse of our genetic material? Absolutely. But I used the same process with this as I have with all the other decisions I’ve made and that is to first become as informed as possible so I could make a well-reasoned and rational decision based on information and not fear. Becoming informed is actually the antidote to fear. This is what informed consent looks like.
They are seriously trying to patent an INDIVIDUAL’S genetic data??? Do they really think they can OWN someone else’s genes??? This is bizarre, even for our bizarrely capitalistic society!
Steve, patenting human genes was a big controversy for a while but it appears the supreme court did strike it down. I did not realize that was no longer the practice and I’m glad to see it was ended.
Me, too! It’s a ridiculous idea! I personally think patenting GMO plants is a ridiculous idea. They did not “invent” a plant! They just messed with it. Otherwise, breeding a new strain of cow would be patentable. Capitalism sucks!
Richard Lewis, I actually think I sort of agree with you on this one. Additionally, any genetic testing in one office, say a psychiatrist’s office, could find its way, especially in this super techno time into other doctor’s office or it might even affect your ability to get a job, get credit, buy a car, house, go to school, etc. One more point, how can we advocate for genetic testing in a psychiatrist’s office, if we believe that psychiatry is not medically/scientifically based. All genetic testing will do is give legitimacy to psychiatry, which really needs to be abolished. The best thing to do is not to schedule an appointment with a psychiatrist or a therapist and if one does occur, when drugs are mentioned, just leave. Psychotherapy isn’t too helpful, either as psychotherapy is just another drug masquerading as words and talk, etc. Thank you.
“One more point, how can we advocate for genetic testing in a psychiatrist’s office, if we believe that psychiatry is not medically/scientifically based.”
Did someone here suggest genetic testing in a psychiatrist’s office? I certainly didn’t.
Hi Rebel, I am so curious about this: “Psychotherapy isn’t too helpful, either as psychotherapy is just another drug masquerading as words and talk, etc.”
I thought good psychotherapy is about being with and building bridges between a person’s stuck parts, and where they want to be, usually, living a meaningful life, in freedom from past traumas and anxieties … in somatic therapy, the words are not even necessary … I’m not saying you’re wrong, but am seeking to understand your lived experience …
sad terrible and horribly familiar.. Thank you Lisa for writing this and hoping your boy steadily improves. My only advice to all in this situation and there are too many ” do not seek healing at the feet of those who broke you ”
Everything else is about patience and trial and error and trying as best you can to repair the damage to the person and the rest of your broken,devastated family.
I have heard virtually every lie you document here and worse, seen the rapid tapers, let’s try this drug, clozapine hailed as the magic drug,the mother blame, the absolute denial of akathisia as the delusion of ” anti psychiatry people” falsehoods written in notes by drug dealers earning a million dollars a year..
You ask for a form for CYP450 testing in Australia they will laugh at you ..
Thank you again
Thank You Lisa,
This story is really frightening but it will save lives.
I’m very sorry for what happened to your son Marcello and your family (in my case after some years things got better and then better again).
World wide theres probably an epidemic of Akathisia Deaths and Damage out there and this is what Big Pharma and its supporters are frightened of.
Page 1 NEAR FATAL MODECATE EXPERIENCE
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Identified by Dr Allen Frances and Others in 1983
Discontinued Circa 2015
I second everything that Ann said. Reading this is heartbreaking. I worked in an akathisia clinic for 10 years, and I saw and heard everything you describe, and more. I am particularly grateful for your story, as it is so down to earth and relateable, and I am going to share it with my (now adult) daughter who reproaches me for not getting her put on psych meds when she was a teen. How could I, with what I was seeing in the clinic every day? Plus I am a very poor metaboliser, so she likely is too. But it’s very hard to impart the horror of akathisia, and your narrative does a much better job than I ever did with my daughter, who just thought I was exxagerating.
I wish your whole family well in the recovery endeavour _/\_
Could you please email the details of this Akathisia clinic to Akathisia Alliance at [email protected]
We receive many emails from people wanting to know if such a clinic exists, at the moment we aren’t aware of any.
Unfortunately, it is no longer operating.
Ok thanks, are you still in contact with anyone who used to work there? I’m interested in what services used to be offered there and what sort of expertise is still out there.
What treatment modalities were provided if someone turned up suffering with akathisia?
Lisa, it’s too painful to leave a long comment because I’ve been there before. I only want to tell you YES, CLING TO HOPE, IT CAN AND DOES HEAL. I hate everything about your story except your son and the way you love him. Today I lifted weights and drove to the grocery store, no problem, no fear, didn’t even think twice to be grateful the nightmare is years behind me. You reminded me to be grateful. Given time and a lot more hell and suffering, you and your son will be where me and my mother are now. Forgetting the past day by day, often by force. Kafkaesque, Yes. I believe women heal faster than men from this but YOUTH may be your son’s saving grace in the end – yes, dig your claws into hope and let the world call you a tiger mom nutcase… whatever they want to. It does heal. Maybe do what I did and yell it at yourself in the mirror so many times that the words don’t mean anything anymore – hope is not lost. I hate all of these empty-headed “MD”s the way I suspect you do, too. I wish you the best possible in wrestling each day to the ground or letting them wash over you both. Time, time, time. No comfort there. But cling anyway. Sending my love, a big embrace to you and you son from me.
This was an extremely powerful story of the horrible odyssey your family has endured related to some of the worst forms of psychiatric abuse. I wish you and your son all the best in future efforts at recovery and also restitution from those responsible for these crimes.
This story needs to be publicly told and exposed well beyond the scope of Mad in America. I would hope you and/or other contacts you have in the creative world, could write and produce a movie on this entire subject matter. The world is in desperate need of another movie with the creative power of “One Flew Over the Cuckoo’s Nest.”
I would hope you would view (and spread on social media) this brand new 11 minute video called “Prescripticide.” https://www.youtube.com/watch?v=uIUSCGIfFD8&t=378s
This powerful video highlights the powerful connection between psychiatric drugs and the rise in suicides and the violence connected to mass shootings. This is information that has been systematically hidden from the public.
Your story, together with the “Prescripticide” video, would make for a very interesting conversation with documentary film producer Michael Moore.
Totally agree Richard that this story needs to get out there as many places as possible. It does not hurt to make a thousand copies and send them off.
2C922C1932D64, Thank you for your interest. You do have a very unusual online name. If mine were all numbers, I’d forget who I am. My saying that about that psychotherapy is a drug is based on several things from my experience in the psych world. First, when they were so actively drugging me, it was like the psychotherapy was just redundant words. Over and over, we just went over the same things. I, personally, think, they were trying to help the drugs along to make me feel stupid, evil, helpless, sick, in need of what they were doing to me. I, also, say it is drug, because, you get to a point that you feel you must have that psychotherapy session. It is the only thing that will make you feel better, sort of like that next pill you take or next drink you must. Psychotherapy becomes an addiction just as much as the drugs do. When you can’t get to psychotherapy or when your psychotherapist cancels, you literally go through a withdrawal— you are sad, irritable and even feel sick. It is not the same as the actual psychiatric drugs, but, in concert with the drugs, they do a number on you. In fact, I think psychotherapy may cause some brain damage and injury, too. I am not sure how much or where in the brain. And, with the drugs, it can be devastating. The sad part is that many people think that psychotherapy is better than the drugs; but, it is intrusive to the body and brain in different ways and just as dangerous. When you put psychotherapy and drugs together as is usually done, especially in the United States, well, the danger, injury and damage can be tragic. I also think CBT, DBT, etc. can also do similar or worse damage especially when augmented by the drugs. Thank you.
Hi Rebel, my online name is actually my genotype (very poor metaboliser), however I have never taken psych drugs, as thankfully, when I was having my trauma/depression/anxiety/breakdown it was the early 80s, and they weren’t drugging teens.
I really appreciate your answer. Maybe I should have said this when I asked the question, but I have done a Masters in Psychotherapy. However I have never started practicing because many folks report that it is dangerous, and I am gathering information (entirely for my personal understanding and contemplation – stories and reflections never to be shared) on how it causes harm in an effort to decide where to go from here. I have no need to be a psychotherapist, and do not want to go into practice until I am convinced that I can do it in a harm-free way. I am most interested in how people heal, and so far the answers vary widely. I have heard some pretty dreadful stories of what passes for therapy as administered by either a psychologist or a psychotherapist.
Once again, thank you for your reply.
Interesting. You will probably get a lot on information on this site of how people who have been through psychotherapy feel about it. The opinions about how it affected them is as varied as those who were involved in it. I wish you well in all your learning endeavors. Perhaps, you might write a book or an article of your findings. What is good about what you’re doing is that it is actual “lived experience” or “true autobiographical data” as opposed to questionable statistical date. Good luck and Thank you.
Thanks Rebel _/\_
Yes, I have read a lot of stories on this site over the years, and have spoken to many people who have had their lives destroyed by psychiatry and ignorant medical treatment.
I hope we are moving towards a new paradigm of ‘being with’ each other as the basis of healing. One of the things that floors me is is that there is an idea in the general publc that ‘mental health experts’ know how to ‘treat mental illness’ … urggggh … as though mental ilnesses are biological illnesses instead of symptoms, often present due to underlying trauma…
Thank you Lisa for sharing your family’s story. I could relate to so much of it, even though many things about our situations are different: my young adult child took an SSRI for 6 years but was quickly tapered off and developed PSSD (Post-SSRI Sexual Dysfunction). But so much of what you describe is so similar too. My child has Brain fog, sleep disturbances, lack of energy, no motivation, anhedonia, inability to focus on reading or writing (they used to write stories for hours), self-absorbed, self-harm, hopelessness… Especially “one of the most insidious effects is that it has completely hijacked his ability to feel anything good, anything human”. My child is now 25 but is in a constant dark place because they cannot see any hope for a normal future, a job, a family, friends. They say “if nothing changes, I won’t want to keep living for very long”. They live at home, and cannot imagine an independent life. These drugs are so horrible, at least for some, so your comments about informed consent are spot on. I did not know about CYP450 genotypes, and will now learn more. The PSA that your son made for the website is so, so, well done. My child has also only found a reason to keep going by becoming a whistleblower and has started a website PSSDCanada.ca in hopes that others can be spared. I agree with the comment by Richard D Lewis that it would be so great if you could use your connections to publicize the danger of antidepressants far and wide. Thank you sharing your story.
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Kindred Spirit: Information is helpful, but, it doesn’t replace the real antidote to fear, which is love. And for better or worse, that is where all true answers lie, even about getting a genetic test, or even what you should eat for dinner. I know it sounds simplistic, but sometimes we humans try to make life way too complicated. There was this ad with this theme song that I heard as a kid. It went : “Life’s simple pleasures are the best!” I would replace the word, “pleasures” with “decisions.” I guess that’s why I believe “love” is the answer to fear and not information. With Love, Thank you.
This is a tragic, gruelling story. That it is happening to thousands more, many living in poverty is a scandal. It deserves a mass direct action campaign
When the occupations of psychiatrists offices start wake me up.
Within your story, there are several ‘watershed’ moments. This is strikingly familiar. As if we are reading the same script. But, we have never met. I have not read your book. How can it be that a similar young man, of a similar age, came down with the same syndrome. And suffers the same consequences? Verbatim. When parents are down in this hellhole with sons, daughters, they rarely reach out. Thank you for doing so. I’d like to know if you also heard the justification for mental illness ‘happening’ to your son. “Well, one out of four people HAVE mental illness.” Or, “Yes, he’s right in the age bracket for (fill in the blank, Bipolar, Schizophrenia, Anxiety, Depression) to likely occur.” And, the classic, “What is the family history of this?” I ask, how many parents grew up (in the 60s, 70s, 80s) knew of so many young people who needed to go into a mental hospital? And, now know several who grew up on the same street who had to be sent away for mental health breakdowns, psychotic episodes, etc.? These cases, by the way, were not ‘drug’ related, as Loomer, somewhat ironically states, if only it was just ‘recreational drugs’, then her son would be helped (not exactly an easy fix either, especially dual-diagnosis). Something is really wrong with this picture. Especially when these were the kids “most likely to succeed”. The ones who did not have childhood emotional issues, ADD, or were taking xanax at age 10 (although that is a very difficult road also). Let’s help one another to peel these layers back, even if the truth of it is a bit raw. Wow, yes, I understand this story. I have a son who, for fear of acting ‘abnormally’, will take any or all meds given to him by a doc. So there you go. For fear of the police coming to put him in the psych unit. Neighbors staring out windows. Endless insomnia. He will comply with treatment. Even if it means weight gain, akasthasia, adrenal stress, high BP, etc. It just does not make sense at all to me. There are too many young people, right in the prime of life, ready to spread their wings and fly–having those wings just clipped?! Marcello is brave, and talented. It may be nice to have a zoom group of people striving for stability to encourage each other. One new alternative my son is doing is neurofeedback. Everything does have this price tag associated with the ‘cure.’ Wishing all the best.