1.6% of the US population — more than 5 million people — currently takes antipsychotic medication such as Zyprexa, Geodon, Risperdal or Haldol, according to a 2017 review in the Journal of the American Medical Association; and antipsychotics are among the top grossing pharmaceuticals sold in the US today. Worldwide the pattern is similar, with antipsychotic drugs considered not only a necessary treatment for psychosis but now also used to treat bipolar mania, anxiety, depression, dementia, learning disability, and even insomnia.
If you are one of the people taking antipsychotics, or you used to take them, chances are you weren’t given a clear picture of what these drugs are all about before being prescribed, much less what your options were for getting off of them. More properly understood as tranquilizers — closer to what they were referred to when first introduced — antipsychotics can be useful to suppress some kinds of behavior, emotions, and perceptions. Clinicians, however, routinely fail in their responsibility to alert patients to a clear understanding of benefits versus risks, how to know when to start and when to stop taking the drugs, how to come off, the downsides of being on the drugs, and even how they can sometimes make things worse in the long run. I’ve consistently seen this huge gap in knowledge and patient education in my more than 15 years working as a mental health advocate, clinician and now researcher, speaking with patients, former patients, families and professionals in more than 30 countries and online. Antipsychotics are big business, professionals are often at a loss as to how to help people going through disturbing experiences, there is a huge fear to speak openly, the voices of patients and former patients are crowded out of the equation — there are many reasons for this lack of real education and real informed consent around antipsychotic medication prescription.
To address this gap in knowledge and help get a clearer picture of the role of antipsychotics in people’s lives, I teamed up with Maastricht University School for Mental Health and Neuroscience in The Netherlands on a world study on antipsychotic medication withdrawal. This June we launched an anonymous online survey about withdrawal. People over the age of 18, who have taken antipsychotic medications, and who have stopped taking them or tried to stop can complete the anonymous survey online at www.antipsychoticwithdrawalsurvey.com. Currently available in English, Spanish, Dutch, and Italian translations, the survey also has additional language translations underway and available soon.
I was drawn to do my doctorate at Maastricht University because of the research focus of European graduate schools, and through the work of Dr. Jim van Os, my study supervisor who is known internationally for his innovative work around psychosis and mental health care. Van Os is Chair of the Department of Psychiatry and Psychology at Maastricht University Medical Centre and a member of the Royal Netherlands Academy of Arts and Sciences, bringing considerable momentum to the project and giving it greater potential to impact the field. He has led prior research into the prevalence of psychosis in the general population, and questioning the viability of the diagnostic label of “schizophrenia” for a widely diverse range of human experience. Van Os is also well known in The Netherlands patient and survivor movement for his participation in psychiatric patient-led initiatives, and he contributed to the innovative Dutch website www.psychosenet.nl, a public resource for psychosis education that includes information about medication withdrawal and harm reduction.
In creating the Maastricht study, we collaborated with patients with experience of antipsychotics as contributors from the very beginning stages. The design of the current survey included a unique crowdsourcing component, where more than 75 English language and 18 German language participants shared their ideas and input of what questions the survey should ask. Additional key collaborators include John Read and Sandra Escher — two key researchers in understanding psychotic experiences — as well as patient-survivors Andrea Zwicknagl, Laura Cox, Miriam Larsen-Barr, Dina Tyler, and Monica Cassani, along with a team of translators. A previous study, funded by the Foundation for Excellence in Mental Health Care, formed a background of conversations around withdrawal, including with Nev Jones, Laysha Ostrow, and Vanessa Krasinski, and the idea of a study of patient experiences of antipsychotic medication withdrawal itself first emerged in discussions at patient support groups organized by the Freedom Center, in Western Massachusetts.
In addition to investigating the variety of withdrawal methods used (such as slow tapering, abrupt withdrawal, or intermittent use of medications) as well as the reasons for discontinuation — such as adverse side effects, availability of alternate coping methods, or the desire to return to work or raise children — the Maastricht study explores the role of social factors influencing the experience of antipsychotic medication withdrawal. My own experience with psychiatric medication, and the patterns that I see among people I work with and meet who have taken antipsychotics, suggests a strong and even determinate role for the social context in shaping how antipsychotics “work” and how easy or difficult it is to withdraw from them. Beliefs about the nature of psychiatric diagnosis, attitudes towards prescribers, and the role of family and community are critical, as well as different social supports, coping mechanisms, and wellness tools. Understanding the impact of medication withdrawal on quality of life and reliance on mental health services is also a central aim of the study.
More than a thousand people, mostly from the US, have already completed the survey online, and we are just now expanding the survey recruitment internationally and into other languages. We’re just beginning to look at the data as it’s coming in, and it’s been especially encouraging to get such a strong positive response from people who completed the survey, who often say they found just taking it a meaningful experience in itself. One person wrote: “The survey was a very powerful process, and actually helped me to integrate even more. Glad I could do it, and that it helps research too,” and another added: “Brave effort on behalf of the researcher(s) and their motivation behind such an important survey… So different than other surveys. I felt ‘liberated’ and ‘validated.’ Very nicely done. I look forward to reading the results.”
My own time taking the antipsychotic drug Navane in the 1990s may very well have helped keep me from going back into the hospital. But did anyone ever sit down with me to help sort out the pros and cons of this powerful mind-altering drug? What it meant to be on it, what the risks were, what to look at and keep in mind as I made my decisions about being on it? Did anyone help me understand how to come off? I had nothing, really. All I had was that seemingly simple name “antipsychotic” and doctors telling me there was nothing else to do to treat my psychotic symptoms. So the equation was: I had psychosis, and this drug was an “antipsychotic.” So I did the math and took my pills. I didn’t know that there is a lot more to these medications than being some kind of indispensable “antidote” to madness.
When I finally came off Navane it was with no support and I just stopped taking the drugs, following a doctor’s instruction that I quit abruptly, with no taper or gradual reduction. I spiraled into a psychotic crisis; I was hearing aggressive voices and became so gripped with shame and terrified of the people around me that I reversed my sleep cycle so I could avoid seeing anyone in the halls or bathroom where I lived. I stayed in my room and only came out at midnight, and ate dry cereal and candy bars, drank soda and read science fiction books. I had terrifying visions of going back to the Golden Gate bridge to end my life. What if I had had someone to help me through that experience, who could tell me what to expect in withdrawing from my drugs, caution me to withdraw slowly and find support and ways to cope? That would have made all the difference in the world.
It’s experiences with antipsychotics like mine and experiences I hear about from people and families I work with, meet, and learn about that motivated me to develop the Maastricht World Study on Antipsychotic Withdrawal. I hope you can get involved and contribute to change.
The Maastricht World Study on Antipsychotic Withdrawal survey is currently open to participants 18 years and older who have taken antipsychotic medications and come off or tried to come off. A list of antipsychotics is available here. The survey is currently in English, Spanish, Dutch and Italian and can be found at www.antipsychoticwithdrawalsurvey.com. If you are interested in supporting the project we encourage you to share in your social media, email, and internet networks, including a Facebook group about the survey. Anyone who wants to stay updated on study developments and receive information about study findings can join the study email list here.
For more info, contact:
Will Hall Lead Researcher +14132102803 [email protected]
Jim van Os, Study Supervisor [email protected]
Beth Hazel, Research Assistant, [email protected]
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.
I suppose there is a need for such studies, but if the spin is that these are “sometimes useful” drugs rather than using their correct classification, i.e. neurotoxins, the ever present danger is that since “consumers” participated the conclusions will be viewed as having more credibility than they deserve.
I do know that after spending 6 weeks locked up on up to 1600 mg. Thorazine (not a typo) daily, I ditched my prescription and went back to pot-smoking almost immediately after being released, with no problems.
I do love reading your insightful wisdom Oldhead. But, pray-tell, how is your pot-smoking experience an understanding of HOW you subsequently experienced no problems?
Will seems to have joined the ranks of a data mining collective, having gained a seat at the table, so to speak, through his valiant efforts to raise awareness of psychiatric opinion masquerading as knowledge.
Which reminds me of R. D. Laing’s warning about the sheer stupidity of assuming that subjectively orchestrated and subjectively volunteered data, is in any way, Objective!
But folks need to make a living in mental health, and they sing their merry song:
DATA DATA! SHOW US THE TRUTH! WE GOT A BAD CASE OF LOVING YOU!
Problems all blend together, who knows how much was neurotoxin-related and how much just the malaise of a toxic culture. I didn’t say I had “no problems,” I never thought about it too much. A friend told me she tried some Thorazine at the same dose as I was prescribed to see what it’s like and said she felt like she was going to die. You don’t see anyone peddling this shit on the corner. Anyway it’s not hard to tell the difference between Life and poison once you have the opportunity to experience both.
Thorazine < pot. I would rather see humans smoking pot over being drugged by the likes of Thorazine.
Have you read Robert’s books oldhead?
Neuroleptic is the original term, used because of the ‘affect,’ not a typo, on the nervous system.
Which why Laing called these synthetic drugs a chemical straight jacket.
Not trying to gaslight you or white ant you, just trying to find the line within, where criticism turns to critique.
The appropriate term is “neurotoxin,” as outlined by Peter Breggin. Anything else is a smokescreen.
Actually it looks like I did use the words “no problems.” As for the medicinal herbology, cannabis I’m sure helped my brain weather the storm and hook back into reality. I consciously decided that attempting to end or even seriously curtail using marijuana was not a priority. I ditched the Thorazine within a day or two.
Folks need to make a living outside of “mental health”, freed from a whole smorgasbord of bogus disease labels and the fraudulent treatment modalities that go along with them.
Statistics, statistics, and yet more statistics say….Protect and defend yourself from this damaging and fraudulent enterprise. Don’t become just another statistic.
Oldhead I will never take neuroleptics again. We need to call them that since sometimes they made me more “psychotic” with weird ideas and even hearing unreal things I never heard before taking them.
But let me play devil’s advocate. These drugs “work” by shutting down part of the brain like pain killers do. And your weed apparently did. If someone had painful thoughts they might be willing to override part of the brain to stop it.
They never worked that way for me–though 6 mg of stelazine took the edge off my anxiety so I found the courage to come out of my shell as a nervous college freshman. IF Dr. M had tapered me off the stuff after a month it might have turned out okay.
Unfortunately Dr. M. was clueless and knew less about the drugs he pushed than a pharma rep with only a high school education. He knew zilch about tapers. (In all justice few doctors do. Even the real kind.)
Yes, neurotoxins shut down your ability to experience troubling emotions, hence “voila,” no more pain, right?
This is the exact opposite of what cannabis (and psychedelics) do, so there is no comparison. Too bad they’ve only recently started acknowledging the medicinal capacities of marijuana, but better late than never.
I’m genuinely curious, oldhead. Why do you STILL use the racist, invented term “marijauna”? You DO know it’s racist history, don’t you?
Cannabis is far more accurate.
It’s funny watching a “Drug Warrior” try to explain the human endocannabinoid system!
But seriously, why still “marijauna”, and not CANNABIS?….
Explain please. How is “Mary Jane” racist? I actually use both terms, as well as others. But I am curious.
Isn’t Mary Jane sexist too?
Nobody’s answered this. “Marihuana” was the term used during “reefer madness” to turn the middle class against the jazz listening Negros and the scary immigrant Mexicans. (please these are not my terms, it is historical.)
Thank Harry Anslinger and Randolph Hearst for the spread of the term:
I can no longer find the PDF where I learned about this – it’s possible that it is Abel – “Marihuana the First 12,000 Years”
Coffee is a natural feel good drug. Much safer than any SSRI. And they take it away when they lock you up.
And how would it be sexist?
Someone once referred to neuroleptics, so-called anti-psychotic drugs, as psychotic drugs, and that’s been my experience, too. If the drugs muted emotions, on one hand, they also seemed to increase the behaviors taken for madness on the other, which is to say, I was happy to come off neuroleptics as they seemed to make me “sicker” rather than “healthier” than I had been previously, in the behavioral sense. Lucidity was not something I ever attained through taking a neuroleptic, however, by going off neuroleptics my thought grew more clear, and unquestionably (as opposed to deceptively) so.
Rachel777, you wrote, “These drugs “work” by shutting down part of the brain like pain killers do.” Are you of the opinion that your emotions are ‘parts’ of you too?
How does such a ‘mechanistic’ sense-of-self explain how the 100 million cell composition of the organ you name ‘brain’ understand ‘how’ your thoughts are energized?
Opinion though is not knowledge and word recognition is nothing more than word recognition, yet we all pretend that knowing words and numbers is a true self-knowing.
And what we are doing here in this cyber-cerebral echo chamber of like-minded souls, is simply the yarda yarda yarda of social inclusion and self-differentation.
If you say that, I’ii say this!
And round and round the circus goes as we wind on down the road, our shadows taller than our souls.
While over at the Temple of the Oracle, the existential advice is Know Thyself and Nothing in Excess.
But hey, the ancients never invented wifi, so what the hell would they know?
Removed for moderation.
Rachel. All Dr. M. knew about your alleged medication was what the pharma company rep told him. It’s after the fact, but you should know that the data from company reps is the medico’s knowledge source for the drugs the rep is selling. (Many years ago I knew a Sandoz rep, whose company car was always packed with samples.)
Love this Will. Shows signs and symptoms that we are getting there in our attempt to show that psychiatric diagnosis suffers from a history of Opinion masquerading as Knowledge.
Regards the psycho-social context of drug withdrawal and the experience of psychosis, when, as you described, ones behaviour is driven by powerful bio-energetic orienting energies like innate (inborn) shame.
Is it reasonable to say ones conscious sense of self becomes Shame? Like people taken over by the innate affect-emotion Rage, on our roads and freeways.
Like you l have stopped taking the drugs more times than I can remember, against medical advice and the opinion masquerading as knowledge, of family & friends.
Unlike you my episodes of affective psychosis were mostly on the up side of innate (inborn) affects, as Silvan Tomkins called the primary orienting responses we are all born with. Like the baby’s communication cry of innate distress.
My six weeks long episodes of innate joy and the euphoria labeled mania, filled my skull bound sense of self with an extraordinary sense of oneness & love.
But l accept that it’s possible that a majority of people suffering this ‘second-coming’ of the sentience (raw feeling of consciousness) we are born with, may only experience negative-affect, as an orienting response to a feeling of life-threat that is subconscious.
Tompkins observations of innate affect-emotions describes 9 inborn subconscious orienting responses, listing 6 as negative, 2 positive and one neutral. With the primary purpose of negative affect-emotions, to maintain life in the face of threat to the organism.
While in my need to develop a balance of thought, felt sense awareness of what happens inside me, during these experiences, that Eleanor Longden suggests should be framed psychologically, as a continuum of human experience.
Have been enabled by reading The Polyvagal Theory and developing a felt sense awareness of the subconscious switch to body-mind states of fear & joy that resides
deep within my brain and is constantly active within my tenth cranial nerve.
A state of self-awareness that has brought me an embodied sense of the prophet’s warning: they seeing see not and in no wise perceive.
And an embodied sense of why R. D. Laing nailed the paradox of human motivation and perception, with his intuitive remark: we are all in a post-hypnotic trance induced in early infancy.
Much respect for your efforts Will.
As long as psyche beyond apollonian ego hegemony will be discriminated and the inquisition will be dehumanizing and demonizing human psyche, people will be killed for represening sth which is seen as theological EVIL. Drugs are drugs, not a cure, and they are only to help the brain coping with the mythical reality, the psychological reality will stay intact. And psychiatrist ought to be someone who represent mythical reality not the sick interests of the psychopatic normalcy. Normalcy is normalcy, apollonian ego has got no clue what is psychosis, and psychosis is not normal, it is sth more than normalcy, it is something which is beyond normalcy. People in psychological minorities has got no defenders, only abusers and unfear judges with no empathy. Rationalism is not the trait of the psychological reality.
Psychiatrists are predators and the biological psyche is a ideological nonsense and the NAZI invention.
People ougt to accept the depression, death and the psychosis AS A way OF perception, paraller to the simple apollonian ego vision, which is the most unpsychological. Language used by psychiatrists is a demonization of the psyche without pro psychological meaning. The are not the defenders. To be normal is nothing. And psychosis is sth tremendous for ego, apollonians destroy psyche.
There is no equality between normal people and psychological ones. Psychosis means – you need to pay, and normalcy costs nothing.
That is why I do believe that normal people ougt to pay for what they are doing to psyche. They are arrogants.
James Hillman Re -visioning psychology.
I always love reading your articles.
“…When I finally came off Navane it was with no support and I just stopped taking the drugs, following a doctor’s instruction that I quit abruptly, with no taper or gradual reduction. I spiraled into a psychotic crisis..”
It was the exact same with me (as regards drug withdrawal).
I suffered from extrapyramidal disability while I consumed the drugs (above) (and was considered ‘non recovered’ due to my disability). When I complained I was given the option (by my Psychiatrist, above) of drug discontinuation in October of 1983.
In December 1983 I was admitted to hospital at Galway Ireland, and the ‘medication’ was re introduced and raised.
I had a suicide attempt in early 1984 (Acute Akathisia), and I was hospitalised again. After leaving hospital I tried to withdraw again, but it was too much for me, so I asked for an alternative medication with less side effects, and I was offered Depixol as an alternative.
A few days later I was injected with Depixol and after 24 hrs I started going mad (with Acute Akathisia). I gained entry into hospital, with difficulty, and I remained in hospital for less than 48 hrs discharging myself when the Acute Akithisia had passed. This admission in April 1984 was my last hospitalization.
I asked for Oral ‘medication’ after this, and I carefully tapered from there. With luck I gained an insight into Neuroleptic Withdrawal “High Anxiety” – which I definitely suffered from; and I learned how to cope with the “High Anxiety”.
As soon as I came off the disabling ‘medication’ I was able to get back into productive employment, and was then considered recovered. The strange thing was that originally in 1980 I was happy to refuse medication, but in 1984 I couldn’t survive without it.
By 1990 I had cut medication to 25mg per day of thioradazine – suitable for hiccoughs. This was changed to 25 mg per day Seroquel (suitable for nothing) in 2005, which eventually disappeared of its own accord.
In 1985/1986 during an interview, my Psychiatrist complimented my recovery and asked me how it had come about. I told him that I had recovered as a result of stopping the disabling ‘medication’ that he had me on, and that these drugs had also caused my Suicidal reactions.
At the next appointment my Psychiatrist told me that he was going away for a years Sabbatical to Canada.
I successfully stopped taking antipsychotics 20 years ago. 800mg twice a day Amisulpride for nearly 3 years. Prior to that 11 months of a torturing depot injection at a much too high dose (intentionally I believe). And prior to that a year or so of Thioridazine (which I abused, regularly taking twice the recommended daily dose in one day, then fibbing that I’d lost them when my script ran out).
I did it alone. Secretly. I was in very impoverished circumstances. I was heavily reliant on tobacco (for reasons those in the know, know) and decided to do the antipsychotics first, then address the nicotine afterwards. So often it was a choice between having a little bit of food, electricity and gas heating, or, maintaining a supply of tobacco. So’s I would mostly choose the tobacco. I had no money for clothes. Public transport. I had no phone. No TV. No washing machine. I was very isolated and would regularly go days, sometimes weeks, without human contact. The most regular contact I had was with the pharmacist to pick up the pills. I’d then come home, dissolve them in water, and pour them down the sink.
What kept me going was walking. I’d walk and walk and walk for miles through the countryside, off the beaten track. Other times I’d spend most of my waking days lying down.
It took about 3 months to start to feel something approaching normal.
I continued to keep it quiet for over a year. And then people started lauding me as a drug success story. My conscience got the better of me and I fessed up. I felt a peculiar guilt, like I’d let people down. But I soon got over that.
Wow! You did well.
The first time I was forced-incarcerated to the State Loony Bin was because of WAY too many drugs, including LSD, alcohol, and “antipsychotics”, -(Thorazine, Stellazine, Haldol, Mellaril, Navane, Cogentin, etc.). I actually improved greatly when I learned the trick of not taking the drugs the staff was giving me, but still making them *think* that I was taking the drugs. So, when I was released, they thought I had “improved” *because* of the drugs, and not in spite of them, as was the case. So, without being aware of the implications of what I had done, I gave a false view of the drugs’ efficacy to the system.
The second time I was forced-incarcerated, it was in the forensic unit of the State prison. That was because I had abruptly stopped taking “Triavil”, ( a combination of Trilafon & Elavil), and experienced a very near-fatal toxic withdrawal reaction.
The 3rd time, I was only in the local hospital’s “mental health unit” for a couple of weeks. I had been given Trazodone by the local “community mental health center”, and they failed to do a blood level check. So I went toxic on the drug, when it built up in my system. I only found out later that a “history of alcoholism” is one of the risk factors requiring more careful drug monitoring.
So the greed, ignorance, and incompetence of the “Mental-Illness-Industrial-Complex” has almost killed me, and I’m only one of the majority of persons who has experienced the “more harm than good” nature of both so-called “anti-psychotics”, and “Mental Health, America, Inc.”
Anybody who finds themselves in the unfortunate situation of being given “anti-psychotics” should not stop taking them abruptly, but should taper down.
Best not to “treat” with the pseudoscience lies of the drug racket and means of social control known as “psychiatry” in the first place! If I knew then what I know now, I would never have taken those poison pills in the first place. So-called “anti-psychotics” usually end up causing the very “psychosis”: they’re supposed to treat. Psychiatry itself, is organized “mental illness”!
Will Hall I want to thank you. That documentary you, Daniel Mackler, and others put out called A Meeting of the Minds gave me the courage to come off my drugs. I had hated how they made me think and feel for decades but feared morphing into Ms. Hyde without them.
I saw all of you allegedly “mentally ill” folks smiling without the glazed, emotionless faces I saw in day treatment and my own mirror every day.
(And for those who feel you need your meds, sorry. Not bashing you. But it is a side effect I have seen and experienced. They lied–or were ignorant–when they called my flat affect a “symptom” instead of a side effect.)
I also want to thank you, Will, for those coaching sessions where you gave me helpful advice on dealing with all the painful emotions as my numbness wore off after 25 years.
I second that emotion! Didn’t know about this, glad it helped you.
After reading these accounts, I wonder if niacin shows any benefit in antipsychotic withdrawal. I’d stopped taking it after being hospitalized for temper outbursts (actually caffeine caused), when I thought staff might be outraged if they caught me. I started B3 again secretly upon returning from a Christmas pass and was taking it when I gave up the stelazine cold turkey a few weeks after being discharged, experiencing no problems. But then I’d only been on the antipsychotic a couple of months before I quit, so I’m not sure, even though I know it’s possible to withdraw from alcohol in a short time (2 days plus or minus) using mega niacin (not niacinamide), having overseen a couple of such withdrawals.
Hey bcharris – I reckon Niacin helps with the “psychotic” symptoms, puts a bit of a damper on them. I can’t say that it “gives clarity” because that’s about insight, and is easy to produce with chemicals. But it probably levels out the spikiness of those symptoms, making them easier to deal with. I doubt it does much for the akathisia, dystonia, dyskinesia, insomnia, etc. But it might address some of the wackiness that coming off the drugs can cause. I’d be adding in magnesium for smooth firing, and fish oil to bathe the neurons, as well.
But – as yet – I have failed to get any of my friends off the neuroleptics. They “need their drugs,” and are terrified of the symptoms that arise (even though the symptoms arise ON the drugs, too).