Martin Harrow along with his colleagues T.H. Jobe and R. N. Faull has published another paper on the long-term outcome of people who experienced a psychotic episode. Funded by a grant from the Foundation for Excellence in Mental Health Care, this paper adds to our knowledge of an extremely important and valuable study.
In this blog, I am going to first review some material that may be familiar to many of you. I will then talk about this latest paper.
In the late 1980’s Harrow began the Chicago Follow-up Study. A group of 139 individuals were assessed during a hospitalization for psychosis. They were then assessed at 2, 4.5, 7.5, 10, 15 and 20 years. The sample included 70 individuals who met the diagnostic criteria for schizophrenia spectrum disorders and 69 individuals diagnosed with mood disorders. The sample was comprised of consecutively admitted patients to two Chicago hospitals who were considered in the early phase of their disorder; for 41% this was a first admission and for 25% it was the second admission.
Of those 70 diagnosed with schizophrenia spectrum disorder (and I will use the notation SZ as they do in the paper to refer to this group), they evaluated 59 at 20 years. The other 11 were evaluated at all time points up through 15 years.
This is considered a naturalistic study. No randomization occurred. The researchers did not offer treatment. They were interested in what happens after a person has a hospitalization at a relatively young age (mean age at initial hospitalization was 23).
In earlier papers, Harrow has discussed general outcome including ability to work and quality of relationships. He has found that many people go on to do fairly well. Robert Whitaker highlighted this study in his book, Anatomy of an Epidemic because of the fact that the individuals with an early schizophrenia diagnosis who did not remain on neuroleptic medication did much better than those who did stay on the drugs. In fact, they did better than those diagnosed with a mood disorder who stayed on the medication even though the prognosis for individuals diagnosed with a mood disorder is thought to be better than those diagnosed with schizophrenia. This was an important part of Whitaker’s general argument that there was accumulating evidence that long-term exposure to neuroleptic drugs worsens outcome.
Those who are critical of Whitaker’s interpretation have generally said that he confused correlation with causation. They point out that it is possible that the individuals who stopped the drugs had a condition that had a more favorable outcome and that the drugs were stopped BECAUSE they were doing better. They point out that we have always known there was a cohort of individuals who will recover from an initial psychotic episode and it would make sense that we would see some people over 20 years off medications and doing well. This study alone, they say, does not prove that the drugs worsen outcome.
While these critics misinterpret Whitaker, who clearly understands the distinction between causation and correlation, their points about alternative explanations of these findings are valid. Whitaker asserts, however, that while not conclusive these findings are nevertheless worrisome and he wrote about other studies that supported his hypothesis. We now have the Wunderink study, a randomized control trial comparing continuous drug treatment to intermittent symptom-focused treatment, and the results were similar; those who were on drugs intermittently and only when symptoms were present overall did much better than those who remained on the drugs continuously.
So what is new about this paper? Harrow, Jobe and Faull looked at the presence of psychotic symptoms (hallucinations, delusions, disorganized thought) over the 20 years and compared them in three groups: those on drugs at every follow up visit (group 1), those on drugs on some but not all visits (group 2), and those on no drugs at any of the visits starting at the 2 year point (group 3). Of the SZ individuals there were 25 in group 1, 24 in group 2 and 15 in group 3.
I want to think about this paper with both hypotheses in mind: hypothesis A is that the drugs do not impact outcome but that we are merely seeing the variance of outcome among people who once were psychotic and hypothesis B is that the drugs contribute to worse outcome.
Harrow found that at every point, those in group 1 had a much higher level of psychotic symptoms than those in group 3. For instance at 4.5 years, 76% of group 1 had some psychotic symptoms as compared to 27% of those in group 3 and at 20 years, the numbers were 56% as compared to 24%. In addition, when looking at how many individuals in each group had psychotic symptoms at a minimum of 4 of the 6 follow up visits, 76% of individuals in group 1 met this criteria as compared to 7% in group 3.
This still does not prove that the drugs caused this differential outcome. These results are not inconsistent with the hypothesis that those who were more symptomatic are the ones to be prescribed the drugs. However, it does raise a question as to how effective these drugs are. As Harrow writes, “These results suggest that, longitudinally, the antipsychotics are not effective in eliminating or reducing psychosis for the great majority of SZ.”
However, there is another finding that does challenge hypothesis A. This comes from Figure 2 in his paper on page 2. At 2 years, 74% of individuals in group 1 have psychotic symptoms as do 60% of those in group 3. These differences are not statistically significant. But the lines diverge at year 4.5 and continue to diverge over the next 15 years. At 4.5 years, 86% of group 1 have psychotic symptoms as compared to 21 % of group 3. By year 20, the difference is 68% vs. 8%.
Overall, there is a decline in both groups but the group on continuous treatment remains much more symptomatic.
There is a suggestion that even though the groups look similar with regard to the presence of psychotic symptoms at year 2, in fact group 1 was more symptomatic (figure 4, page 5). 52% of group 1 had moderate or severe functional impairment at year 2 as compared to 30% in group 3. But these lines also diverge. By year 20, 47% percent in Group 1 are still struggling as compared to 8% in group 3.
This study tells us that there was a group of individuals who at 2 years were symptomatic, 30% of them significantly impaired by their symptoms, who chose to remain off-drug. Overall, this group improved dramatically over the next 15 years.
So let’s go back to the two hypotheses. With hypothesis A, I would have predicted that the rate of psychosis in the group who was not on drug to be lower from early on. After all, the hypothesis is that they were destined to do well no matter what and the drugs were stopped because they were doing well. I would have expected them to diverge from the other group by two years. However, they did not diverge until 4.5 years.
This is how science works. There are theories with supporting hypothesis. Each single study addresses a narrowly defined question. Over time, accumulating studies support or refute these hypotheses and over time, there may be a consensus that the preponderance of the data support a theory. Even then, theories may be refuted. Science is messy.
The impact of this study is sometimes minimized because it is not a randomized controlled study (RCT). It has become axiomatic that RCTs are the gold standard in medicine. David Healy, in his book Pharmageddon, has addressed the misunderstanding involved in this notion. RCTs are helpful in answering a certain kind of question, specifically; what is the impact of altering one variable in a system. When done well, they are most helpful in discerning small differences among treatments. We do not need an RCT to find a large difference. We would not have waited for an RCT to use penicillin because its short-term impact on infection was so apparent. At the same time, RCT’s did not inform us about the problems with long-term use of antibiotics in our society. It took a different kind of approach – an epidemiologic one – to understand those kinds of problems.
This study was a naturalistic one and I would argue that this kind of study is an important contribution to this tremendously complex field. One can have a hypothesis with a naturalistic study and one can see to what extent the study support that hypothesis. I challenge my psychiatric colleagues and others to do a thought experiment. If you had been told of this study in 1990, what might you have expected based on the narrative of the time? How would you have drawn those graphs? If you would have drawn them differently from what the subsequent data revealed, what questions does that raise for you? This is what we need to be discussing right now. To dismiss this work because it is naturalistic is missing the point. This is rich data. It may never be collected again. It informs us and at the very least raises some serious questions about current paradigms of care.
But it does not stand alone. It is part of a body of data. It joins Andreasen’s long-term imaging data. It joins recent studies that question even the short term efficacy of these drugs. It joins Wunderink’s randomized trial. It joins other studies, some done as long at 30 years ago, which suggested the same thing – long term use of neuroleptics hinder recovery.
At the same time, this study raises conundrums – an aspect of the paradox that Whitaker addresses in his notable chapter in Anatomy, “A Paradox Revealed.” Among the 70 people in the SZ group, only 12 were free of psychotic symptoms at each assessment. Seven were in the group who were never on drug, so of the 15 who never took drugs eight individuals were not on antipsychotics and had periods of psychosis. Overall most of them appeared to have ended up psychosis free at 20 years. This suggests to me that at some point, while experiencing psychotic symptoms, these individuals chose to remain off drugs. We have a system of care, however, which strongly urges drug treatment at any sign of psychosis. It is almost axiomatic that if one requires hospital level of care, that drugs will be prescribed. People are labeled with anosognosia if they choose to try to recover without drugs and dire warnings of worse outcome are made by many psychiatrists. I am not sure there is a will to offer respite – and some people need a high level of security in order to be safe – to these individuals when there are drugs available that will diminish the intensity of the psychosis in the short run.
Right now, there is legislation moving through congress – the add-on to the Medicare bill that was passed by congress on Friday and which will go to the senate on Monday – that will take us in a different direction. It will make it more likely that people will be forced to remain on drugs long-term and even less likely or even impossible that alternatives to drug treatment will even be available.
I think there is room for a reasonable approach that might not satisfy everyone but might balance the various interests: respect for personal autonomy, safety, economy, improving long term outcome. I would try to hold off on using drugs for everyone for whom a safe and supportive environment can be found. For others, I might offer a neuroleptic but start low and increase slowly. This was the fundamental approach of the neuroleptic threshold study done over 20 years ago. Then when the person is stable, I would have an open discussion about slowly tapering. Even if a person declines this offer, I have learned that this is a discussion that can be ongoing for many years. I am learning through my own practice that people who may have had trouble coming off drugs earlier can still be successful with tapers even 10 or 15 years later. But this is an approach that does not place prevention of relapse as paramount, but in balance with other considerations including personal choice and the many consequences associated with long-term exposure to these drugs.
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Let us assume that the human being is naturally set for health and wholeness. I think that is a reasonable assumption–certainly animals are. Next let us assume that any tinkering with the brain and nervous system or the endocrine system is risky. No one knows what these drugs are doing–not really. [Well, they make pharmaceuticals rich.]
What we call psychotic is some kind of imbalance. But no one know for sure what that imbalance is caused by or exactly where it is. Now imagine a symphony orchestra. If suddenly the sound goes off the conductor through his hearing will talk to the piccolo player whose instrument is broken. Or perhaps he has an allergenic reaction. The problem is solved. Now here is a psychotic patient. The doctor prescribes an anti-psychotic whose action is a mystery. There is no analogy here. The conductor knows; the doctor is guessing and tinkering with a mystery. This sounds fairly loony to me.
The doctor is proceeding by analogy. A few of his medications relieve physical ailments. So why shouldn’t a medication remove a mental ailment? If you have a child that lies would you ever imagine that a medication would solve the problem? Some one for example who is unduly fearful would like to develop courage. With a drug? Someone who hallucinates should take a drug? What is going on here? Well, a drug company and a psychiatrist are making good money. But there is certainly a lack of reflection going on as well. The initial idea that a drug is what is needed needs to be examined. The very idea that distressing conditions are simply the machine damaged or out of adjustment is simply a convenient assumption but not a proven fact. Materialism serving the interests of not very imaginative people. If the human is not simply an organic machine, if the human has for example a soul, then the doctor and the drug are interfering with a problem the patient needs to solve. You are depressed; you have a problem to solve. You are anxious; you have a problem to solve. You are acting crazy; another problem to solve. And people through out history have solved them or at least worked on them as much as they could. Otherwise, we are robbing people of their projects. We are trying to steal something in their lives; and we call it helping! To me the whole idea of psychiatric medication is absurd and very dangerous and based on bad metaphysics. People are not machines. Depression has an historical cause. Work needs to be done by the person. The person has a journey to make. The psychiatrist is not a good guide. Mental illness is itself a metaphor from the physical body. Mental health care is likely to become a road to nowhere.
It is interesting that Hippocrates shared this same philosophy about the body and its natural tendency to recovery. That is where his famous recommendation “First do no harm” comes from.The idea is to be very careful when intervening to not do more harm that the condition we are treating. But as I try to say above, it is very hard to stand by. It is hard for families and in some cases it is hard as a society.
I know what you mean. This is part of the price we pay in America for rejecting the feminine. No more actresses or heroines. Just two types of guys. And negative emotions need to be treated the way a guy treats a noise in his auto. Get a new part or have the present one repaired. We think we are machines; and machines don’t self repair.
But the drugs represent a cure that is worse than the ailment. Still it is an awful temptation to dabble in brain chemistry and just see what this stuff might do. I suppose shocking the system may on occasion almost provide a cure. For a while.
The machine model of the human appeals to the intellect and satisfies scientific materialism. The problem is that it only works for part of the human makeup. It is a great over simplification. In fact it scares people who then feel they are a defective or broken machine who may not get repaired properly or at all. The idea that negative emotions may indeed be the consequence of how one has lived, the past family and environment, one’s diet, etc. has become rather foreign. Americans want to do whatever they wish and not experience consequences–no hang overs. Commit crimes and forget. And so on. Maybe the negative emotions have a message that needs to be heard; the drugs muffle the voices and the person goes on at a limp.
You see the end goal is this: Joe kills someone and is given a pill that changes him into a kind and gentle person. Bill who is a thief is given another kind of pill and no longer steals. If people are machines, why not? If people are not machines, then these mechanical approaches only work for things like a broken bone or a disease. They can not be used to overcome years of being mean and selfish. Or envious and proud. These are not mechanical matters. They are matters of education and training and may require a life time of work to overcome. But that idea, that model, does not put money in the pockets of the drug companies.
Most psychiatrists are quackes. If I who am not a doctor can figure out what is going on and read books, so can they. They have that responsibility but I do not. When they put someone on Seroquel or Ambien they are behaving like a criminal. At least criminal negligence.
It is their job to investigate and do research and not to find more new labels for mental illnesses.
How about psychiatric negligence syndrome? Prescription would be loss of license and required to do community service for ten years working in one of the mental hospitals they have helped create. Am I too harsh? I have not personally ever been on these drugs but know many that have and their suffering and feeling betrayed. Or are psychiatrists like bankers? Too important to jail? I suspect so. Compassion actually might compel a society to stop both bankers and psychiatrists from harming more persons–and they are not the only ones who need to be stopped. Meanwhile people need to practice not being coaxed or cajoled into being victims. Stand up straight and be a king or queen.
Great piece Sandra. I was hoping you were going to weigh in on this latest update of Harrow, et al. I agree that those who dismiss these findings do so ono the basis of calling it a “naturalistic” and not a controlled double blind study. I think those who are critiqueing this study would look for any excuse to dismiss the findings. But th evidence is mounting…Wunderkind, alterabntive approaches like Open SDialogue showing success. Insel acknowledging that long term use of antipsychotics is not effective and likely detrimental.
But here is what I’d like to really address. Many of us would hope that those who are going through an initial episode of psychosis/mania could be treated with a no/low drug regimen and then be tapered off as stabilization improves. But this really only addresses the “first-time” population. How would you address helping those who have been treated long term. From first hand experiecne, it seems like the longer you are on these drugs, the harder it is to “come off.” And of course, it takes time, lots of time and support.
Many of the people who have been medicated don’t have the structure, the socio-economic means, and the right therapeutic community/doctors to walk that road. I agree with you completely about the best approach for helping those who are first experiencing psychosis. I’m interested in your approach for those who have been in-system for many years.
Thanks for your comments.
I have been working with people for most of my career to try to insure that they are at the very least on the lowest dose possible. this is actually what the experts were recommending in the early 1990’s. I worked on a study – the neuroleptic threshold study – that demonstrated that people could be treated with much lower doses than what was typical at the time. But the message got lost (at least in the US. If you look at European studies, doses are much lower than they are in the US). I believe it was due to the marketing strategies that suggested the newer drugs were safer.
For the past 3 years, I have been tracking my experience with this. Here is a link to my most recent data on this. http://www.madinamerica.com/2013/11/tapering-neuroleptics-two-year-results/
It does not always go well but I have found that even when a person has been on these drugs for many years, that doses can be reduced.
We have invited Ron Coleman and Karen Taylor to come speak about the Hearing Voices approach. We have had a lot of interest in this.
Now, I have to admit, I know some people for whom dose reduction dose not go well. Some do not want to make a change in dose. I try to work with each individual to figure out what is best for him or her.
I think many “official” guidelines in US and Europe alike say things such as when a person has been symptom free for a year or longer, the dose of neuroleptics can be reduced or the neuroleptics can maybe stopped. Even this Harrow paper mentions it:
“Association (APA) guidelines (Lehman et al. 2004) indicate clinicians should consider discontinuing antipsychotics for SZ who are symptom free for a year or longer. However, many clinicians assume that antipsychotics are important for continued stability and keep SZ on antipsychotics indefinitely.”
I guess reductions in the dose or even discontinuation happens relatively rarely in practice, at least initiated by a doctor. “You’ve been doing so well for a year now after your psychosis, let’s try to taper the neuroleptic off!” No, the thinking is more often like “let’s not rock the boat”. There may be other related issues too, such as that if a person is heavily medicated, he’ll often never properly “recover” functionally, etc, to a level where it is considered that maybe now it’s time to reduce the dose. Often the reality seems to be that the patient eats some mix of drugs, if they start to get too serious effects or problems, then the doses are increased, maybe a new drug is added, maybe a neuroleptic is switched to another neuroleptic, and so on. Once the patient is “stabilised” on a certain set of medications and doesn’t whine too much, it probably often seems the safest and easiest thing to just keep taking the meds at those levels.
I would just add that the “let’s not rock the boat” sentiment is something I understand. Psychosis is hard for many people, it can disrupt their lives, it can be frightening, and I respect those people I know who do not want to risk a recurrence. I try to be honest with people about what I know and do not know but in the end, it is a personal decision about what risks one wants to take.
Yes, both patients and doctors, etc, can think “let’s not rock the boat” way. Many people diagnosed with schizophrenia, psychosis, bipolar and so on this way. Often when I’ve read what many patients write, they seem to prefer to take their drugs, and I’m not one to tell them not to take them.
I wanted to rock my personal boat and they tried to deny it with any means and stories they could invent, and even pathologised my opinions on my own treatment. “Has paranoia concerning meds”, etc. I’m not saying anyone shouldn’t eat neuroleptics, but I guess I just want to save my own ass and that of people with similar issues.
Harrow also says this about “adherence”. Many professionals think it’s very important to increase adherence and they try to do it with any means. Surely there are many patients who stop their drugs, return to hospital, etc. But “SZ” is not a single brain degrading reverse Parkinson’s disease like some seem to think. Some people do quite well without meds in longer term. With all this talk about increasing adherence, I wonder if all those people in the study who in the end didn’t take neuroleptics would do even better if their adherence was increased and they were made to use neuroleptics…
“Lack of adherence to prescribed medications re- duces the effectiveness of antipsychotics for patients. In research on medication adherence for psychiatric patients with psychosis, the mean rate of adherence was estimated at 58% (Cramer & Rosenheck, 1998; Osterberg & Blaschke, 2005). Lack of adherence con- tributes to the very poor outcome in some patients in treatment. However, the very large significant differ- ences, in the opposite direction from that expected, found in rates of psychosis and rehospitalization when comparing unmedicated SZ to those prescribed antipsychotics is so striking and the timing consistent with other reports about antipsychotic effects dimin- ishing or even reversing after the 2–3-year period (Harrow et al. 2005, 2012; Harrow & Jobe, 2007; Wunderink et al. 2013) that it suggests adherence is not the main factor contributing to poor outcome.
In addition, lack of adherence does not contribute to the relatively favorable outcomes of many SZ who were unmedicated for many years. Often, these unme- dicated SZ are not taken into account in estimates of outcome in schizophrenia. The field knows very little about this type of SZ. Cohen & Cohen (1984) have noted the bias that can arise from our more frequent clinical contact with chronic poor outcome patients.”
It doesn’t have to be all or nothing, its possible to reduce and see. My experience is that exposure to misuse of tranquillization weakens the system. I wasn’t able to ‘come off’ medication, but with the help of Psychotherapy I was able to reduce right down to non intrusive levels, and eventually to nothing.
Its also a fact that a person might not be psychotic but disturbed to begin with, and then developes psychosis due to medication withdrawal.
Sandra, Well put. I wish I could send a copy of this to all my former psychiatrists. I recall that back in 1981 when I entered the mental health system they made the statement to me that they didn’t treat what was wrong with me (an eating disorder), and knew nothing about it, so they’d go ahead and give me the cookie-cutter treatment, that is, give me the same drugs they gave to everyone else. Antipsychotics and lithium. “If the patient is getting side effects, it means the drug is working”…That sure made loads of sense back then!
Unfortunately, the study doesn’t take a fair view of those in the “30 years later and drugged” group because most, I believe, are no longer living. Either that, or so incapacitated by mis-“treatment,” Tardive Dyskinesia, organ breakdown, brain damage, long-term abuse, and those that simply cannot be accounted for due to extreme poverty or homelessness. I doubt too many of these unfortunate folks could even be found to answer any sort of survey.
I’m sure a similar study would show that the MH system causes more social isolation and breakdown of family ties in the group that did have MH care than in the group that did not. After all, if it were really an “illness,” wouldn’t it bring a family together? But no, treatment often wrecks families.
I try to warn people simply to stay away from any sort of mental health care altogether, and not to ever set foot in any sort of mental health situation to begin with. As for me, I was deeply into this “illness” thing until one day, I walked out.
Nothing’s wrong at all. I’m off drugs and doing fine without the brainwashing. I have yet to become overly anxious or fall in love with a movie star or hear voices or even consider rating my moods on a chart.
One thing though: I’m plenty pissed off. I sure don’t want to manage it, nor do I want it reined in or straitjacketed. I want it wild, free, brilliant, sparkling. If I’m gonna be pissed off, I want it to travel far and wide across the land. It might clean out the cobwebs in a few ears someday. That’s why I write.
Thanks for your comments. This study was done prospectively. So they have not had the 30 years to follow people but I understand your point. I am glad you are feeling better and that you have found an outlet for your anger.
You would think, though, after 20 years many would be dead, no? Or severely medically compromised, or physically ill, or wrought with diabetes or chronic pain and various related complications, or terribly overweight. All that makes a person miserable, lowers quality of life, and of course your morale goes down, too.
Thanks for your interpretation of this study and your willingness to challenge the psychiatric establishment.
I have a question and also a suggestion of a title for your next blog.
My question is as follows: What do you think like minded psychiatrists, such as yourself, should do if main stream psychiatry continues to ignore this rising evidence that major tranquilizers (“anti-psychotics”) cause far more harm than good?
And given that there is an implied message in all this evaluation of said research that tells us that major tranquilizers actually sustain psychotic symptoms by changing brain structure with the addition of D2 dopamine receptors (and related super sensitivity syndrome) and create conditions for brain shrinkage, my title suggestion for your next blog is the following:
“Do Neuroleptics “Anti-psychotics” Sustain the Symptoms of Psychosis and Create Neurological Conditions for Their Very Existence”
Thank you for your comments. Unfortunately, I do not have an answer to these questions. I wish I understood more about the question you raise.
Why, also, is there obvious evidence that taking massive amounts of sedating drugs will cause permanent inability to sleep? Any junior high school kid can figure that one out. It does not take rocket science nor fancy degrees. I was put on three antipsychotics (neuroleptics) at the highest possible doses, most likely because I “tolerated” them. The consequence is inability for my body to sleep. I’m not anxious nor restless at night. I simply do not sleep without chemical additives to remind my body to fall into a sleep state, due to damages caused by these drugs I was told were good for me. That was such a lie. I know I am not alone. You can find this all over the forums but you can’t find studies. I believe these studies are being hidden from the public. They don’t want the public to know. But it’s right in front of our eyes. Obvious. Why can’t the medical establishment own up to its own mistakes?
From what little I know, I think the dopamine hypersensitivity thing is maybe even overstated in these conversations. This is almost “common wisdom” and I don’t have any data to back it up, but for instance in the case of neuroleptics used on high doses, they block the dopamine receptors. Cells may grow more dopamine receptors, more dopamine may be produced, dopamine receptors may go to a “high” state, etc, to compensate or maybe to find some kind of a homeostasis. In any case, if you block enough of those receptors, all those compensatory mechanisms won’t be enough to undo the effects of the drugs. Some compensations are made, but as long as you take the drug in a high dose, the tolerance won’t undo all of the effects. Certainly it’s not feasible to think that, if you’re taking the drug in a high constant level, the dopamine compensation will overcome the effects of the drug and eventually cause even more “dopaminergic activity” than there was to begin with. If you try to lower the dose of the drug, or quit it, then of course these compensatory effects may come to play.
Still, there may be many effects of these drugs which lead to all kinds of problems and diagnoses. For instance, I think at the current day many of the “cognitive and negative symptoms of schizophrenia” are quite hard to distinguish from the actual “disease called schizophrenia”.
“For instance, I think at the current day many of the “cognitive and negative symptoms of schizophrenia” [B]caused by drugs[/i] are quite hard to distinguish from the actual “disease called schizophrenia”.
I have tried to understand supersensitivity. I was even in communication whit Philip Seeman who has done the basic work on this. What I have concluded is that this is a real thing but we do not have a full enough understanding of it because we are not looking carefully enough. For instance, tardive dyskinesia is thought the be relted to this but not everyone gets it. Why?
I don’t know too much about Parkinson’s, or about anything actually, but to my mind there maybe these two kinds of thinking:
1. Lack of dopamine signalling between neurons somehow causes Parkinson’s and related stuff. In Parkinson’s, maybe some dopamine producing cells die, etc. With neuroleptics, they block the dopamine pathways and thus cause the same issues “downstream”. This kind of thinking is kind of obvious.
2. Because of the blocking of dopamine receptors, body tries to create even more dopamine, etc, and this overproduction kind of causes issues in some parts such as substantia nigra over time.
Heh, I also must repeat that I don’t understand this body, biology or neurostuff at all. I’m just kind of trying to understand some of it.
I suffer from mild dyskinesia, and suffered from super sensitivity “hypo manic psychosis” after I was weaned off the antipsychotics. The super sensitivity “psychosis” was the absolute best part of my living nightmare experience with the psychiatric community, however. It amounted to essentially an awakening to the story of my dreams (and according to my medical records, the psychiatric profession believes people’s dreams are “psychosis.” How absurd.)
Nonetheless, in my case, it’s proving helpful and hopeful to now have an understanding of the “me” in my dreams vs. the “me” in my waking hours. Because I can now explain the story behind my artwork. I’d been painting my dreams for decades, and never understood where my inspiration came from, until I awoke to my dreams. Now I can explain the story behind all my work collectively. It’s a story of painting iatrogenic “bipolar,” which is a heartbreaking story of iatrogenic harm done on an almost unfathomable scale to millions Americans. But it’s also a story of a woman who awoke to an understanding of a unity of souls, or oneness with all of humanity, and a story of an amazing God of love.
All “psychosis” is not bad, and my “super sensitivity psychosis” relates amazingly to concepts of enlightenment discussed in eastern religions, I’m learning. For me, it was just the “voices” caused by being on the neuroleptics, that were evil. Well, the doctors covering up malpractice and child abuse with iatrogenic bipolar were evil, too. Truly, majorly tranquilizing people with antipsychotics, thus preventing a person from understanding more about their subconscious, is nothing but detrimental to patients.
Psychiatry covers up problems, and postpones dealing with real life problems, but it does not cure or help one heal whatsoever. One can’t heal when living in denial, and that’s what psychiatry is all about, covering up real life problems. And neuroleptics are not “antipsychotics,” they CAUSE psychosis.
But there’s always that silver lining, right? And artists work on turning the ugly into something beautiful. But turning the reality that over a million American children have been turned into bipolar / schizophrenics, completely with drugs, is going to be very difficult to make into something pretty. Please ask your psychiatrist friends to stop torturing children, who’ve had ADRs from antidepressants or ADHD drugs misdiagnosed as bipolar, with neuroleptics. Forcing anyone to take antipsychotics, based upon fictitious disorders, is evil.
Super sensitivity: If Open Dialogue can produce 80% recovery rates, then 80% of ‘Relapse’ is Super sensitivity or Rebound Syndrome. Psychosis can mean anything, but a lot of people diagnosed with it are in touch enough to respond to the Talking Treatments. Its the DSM hijack system that justifies the medicating.
One more comment to clarify what I was trying to articulate here about this dopamine supersensitivity. One sometimes hears it as a possible explanation for increased psychosis with neuroleptic treatment. I can easily see how neuroleptics might cause dopamine supersensitivity, which in turn might explain things such as why the effectiveness of neuroleptics is reduced over time in some patients, or why some patients get psychotic symptoms when they lower their dosages. However, it’s less clear to me why this mechanism would cause more psychosis for people why use neuroleptics at a constant or increasing dose. I just don’t see why this would be the case.
I browsed some of those Seeman papers and also this Chouinard paper:
“We have propposed [sic] that similar changes occur in the mesolimbic pathway in response to the chronic DA blockage by these drugs and that psychotic symptoms following withdrawal or decrease of neuroleptics could be the clinical expression of a mesolimbic DA postsynaptic receptor supersensitivity.”
Is there any proposed mechanism or proof that neuroleptic dopamine supersensitivity causes more psychotic symptoms in patients who use a maintenance dose of neuroleptics? I can see that this kind of supersensitivity could, for instance, mean that some patients keep taking higher and higher amounts of neuroleptics and then they may stop working very well.
I just mean that if one’s arguing that maintenance treatment with neuroleptics causes more psychosis in the end, is neuroleptic caused dopamine supersensitivity a valid argument given what we know?
Also, for instance, Seeman et al
“Breakthrough” Dopamine Supersensitivity during Ongoing Antipsychotic Treatment Leads to Treatment Failure over Time
It also talks about neuroleptic treatment maybe sometimes losing its effectiveness through supersensitivity, but not about treatment causing more psychosis through this mechanisms, as if the net dopamine activity would somehow rise above what it was before neuroleptics. I’m asking only because often in MiA I hear this argument that neuroleptic induced supersensitivity maybe means there are more psychosis in neuroleptic treated patients in long term, this claim is almost in the Harrow paper too, and that recent post from Whitaker. Does it? Why?
“Although in the present study with rats haloperidol and olanzapine lost efficacy over time, not all treated patients develop therapeutic tolerance. However, a notable proportion of initially stabilized patients relapse during treatment and this cannot always be explained by nonadherence to treatment. For example, even when medication is guaranteed by depot injection, the average relapse rate at 1–2 years is still 18–55% (Carpenter et al., 1999; Schooler, 2003; De Graeve et al., 2005). Although relapse during continued treatment can be attributed to a number of reasons, our results suggest that an antipsychotic-induced increase in dopamine sensitivity might predispose certain individuals to psychotic relapse. This provides a discrete hypothesis that can be tested in patients.
Together, the present findings allow us to propose the following: (1) initially, antipsychotics block D2 receptors, and increase dopamine and dopamine turnover in a system where levels of D2 receptors and D2High receptors are normal. At this stage the balance of agonist (i.e., endogenous dopamine-related) drive and receptor blockade allows the antipsychotic to exert a net anti-dopaminergic effect. (2) With continued treatment, there is a decrease in turnover on the presynaptic side, D2 blockade by antipsychotics is maintained, but both D2 receptor numbers and D2High sites are elevated. At this later stage, endogenous dopamine drive is potentiated and can more readily oppose the anti-dopaminergic effects of the antipsychotic. This might explain why antipsychotics so often fail. The challenge now is to identify the neural processes by which dopamine supersensitivity and antipsychotic treatment tolerance develop. At the same time, the biological (i.e., increases in D2 receptors and D2High sites) and behavioral (loss of efficacy in behavioral models) markers identified here provide targets that can be used to identify strategies to overcome or prevent antipsychotic treatment failure.”
You make a distinction between two notions: “the effectiveness of neuroleptics is reduced over time in some patients” which you consider supersensitivity explaining vs. ” more psychosis for people why[who] use neuroleptics at a constant or increasing dose”.
I think others see that as the same thing. In his post, Whitaker equates the presence of psychotic symptoms over 20 years in the group who remained on neuroleptics as indication that supersensitivity occurs.
Psychiatrists, on the other hand, have tended to attribute declines over time to the natural course of the condition. they tend to assume that without the drugs, the condition would be even worse. This is embedded in our concept of schizophrenia or dementia praecox which Krapelin described as condition with a deteriorating course. This is bolstered by the fact that when you stop the drugs, especially abruptly, symptoms often do get worse. This is especially true of people who come to see psychiatrists.All of those people who go off them them and do OK, do not come to see us so our view gets distorted.
I just do not think this has been fully studied in humans. Most of Seeman’s work is in animals. He demonstrates that haloperidol causes an upregulation of DA receptors that is similar but not on the same magnitude as stimulants. Oddly, however, haloperidol partially reverses the effects of stimulants.
I am not sure I am addressing your question but some interpret the high rate of psychosis over time in Harrow’s study to be consistent with the theory of supersensitivity. I am less sure that we know the mechanism. I do know people who have no psychotic symptoms over many years while remaining on drug. I also know people who remain on drug fro many years who have no evidence of TD, in contrast to what Fiachra has written.
I do not think ALL psychosis is due to drug. I do think we have no good evidence that keeping everyone on these drugs indefinitely is good for them. I also do not think we are prepared to help people through psychosis without giving them drugs.
Sandra, you wrote:
“You make a distinction between two notions: “the effectiveness of neuroleptics is reduced over time in some patients” which you consider supersensitivity explaining vs. ” more psychosis for people why[who] use neuroleptics at a constant or increasing dose”.
I think others see that as the same thing. In his post, Whitaker equates the presence of psychotic symptoms over 20 years in the group who remained on neuroleptics as indication that supersensitivity occurs.”
Yes. Even after reading those papers by Seeman, Chouinard, etc, I don’t see them talking about maintenance treatment causing more psychosis than there was to begin with. I understand that neuroleptic induced dopamine supersensitivity means roughly that neuroleptics block dopamine receptors, which causes body to adjust so that it postsynaptic neurons grow more dopamine receptors, or maybe some dopamine receptors go to a “high” affinity state, etc. That is, neuroleptics initially reduce dopamine related signalling, but later body makes compensations which may potentially undo at least some of the dopamine blocking effects of the neuroleptic. Because of the adjustment, the net dopamine signalling while on chronic neuroleptic treatment may become closer to the baseline. I don’t see why dopamine activity would shoot [i]over[/i] baseline as long as the same level of neuroleptic is maintained. If you lower the dose of neuroleptic after these adaptations, then I can see how these adaptations can cause symptoms.
In that post from Whitaker, in c) he says that someone suggested neuroleptics made schizophrenic patients “more vulnerable to future relapse than would be the case in the natural course of the illness.” In d), he gives Chouinard supersensitivity as a possible biological explanation for this. I don’t really see those Chouinard or Seeman papers are a direct explanation of c). I agree that presence of psychotic symptoms over 20 years may be related to supersensitivity, as can withdrawal psychosis, etc.
That’s basically my point. I’m not claiming neuroleptics do not cause more psychosis in long term through some mechanism. I just don’t directly see why neuroleptic induced dopamine supersensitivity would cause more psychosis in long term as long as the level of medication is maintained or increased, and I didn’t see those references claim it either. It’s possible supersensitivity is related to more psychotic symptoms in this way too, but I don’t see enough evidence to state it this way. In short, I see from the reasoning in those studies how a constant dose of a neuroleptic may cause supersensitivity, which may increase the net dopamine signalling closer to the baseline, and therefore psychotic symptoms may reoccur despite neuroleptic treatment. It doesn’t seem to directly explain why a constant dose of a neuroleptic would cause more psychotic symptoms than there was at the baseline.
I’ll add that one way I see this neuroleptic induced dopamine supersensitivity stuff could cause more psychotic symptoms or hospitalisations in patients eating a “maintenance dose of neuroleptic” is that some of them forgot to take their neuroleptic, or secretly didn’t take it. This explanation I can easily understand, the neuroleptic primed brains would cause “supersensitive psychosis”.
Maybe one reason why I insist on this point is related to a quote someone mentioned, I think it was Maria Bradshaw.
“The most perfidious way of harming a cause consists of defending it deliberately with faulty arguments.”
— Friedrich Nietzsche
Dear Dr Sandra
Most people on ‘anti psychotics’ for any length of time do develop tardive dyskinesia. Tardive Dyskinesia is irreversible movement disorder or neuro muscular damage (not just peculiar movement).
Most people exposed to ‘anti psychotics’ in any volume for any length of time suffer long term neurological damage. You can tell this from shaking hands with a person.
I think a person would be very lucky not to suffer from permanent neuro muscular damage at some level if on the usual ‘maintenance’ doses of neuroleptic medication for any length of time. The quoted figure from the Royal College of Psychiatrists (I believe) is that 80% of all consumers eventually develop TD.
From my experience Psychiatric Disability is generally neuroleptic induced. NICE (in the UK) recommends using the lowest dose possible in combination with psychotherapy.
Thank you for sharing this information with us. You wrote in your article:
Right now, there is legislation moving through congress – the add-on to the Medicare bill that was passed by congress on Friday and which will go to the senate on Monday – that will take us in a different direction. It will make it more likely that people will be forced to remain on drugs long-term and even less likely or even impossible that alternatives to drug treatment will even be available.
Do you agree with this proposed legislation given your post and Robert Whitaker’s new post above yours? I have the impression that people in most if not all states can be treated by force already though I read the proposed additions as well. You’ve indicated that you have felt forced to do this with certain people, but also, that Vermont has strong patient rights as well. Do you feel this law if passed with negate those patient rights and give you more necessary power or do you think it is unnecessary?
What I found upsetting in another post at MIA and elsewhere is that Obama and others in his cabinet met with those like Fuller Torrey and others advocating life long forced drugging for the supposed “seriously mentally ill,” which includes schizophrenia and so the latest fad of bipolar disorder. They have promoted the lie that most of the “severely mentally ill” are violent and dangerous to push their dishonest, fascist agenda. They’ve even advised families to turn over furniture to get their so called loved ones committed against their will sure to make them permanent enemies for the most part. This was in reaction to the Adam Lanza murders and other recent public shootings like that of James Holmes. Sadly, it appears that this scapegoating of the so called “mentally ill” has been used to side track from the major issue of gun control by a cowardly, ineffective government catering to the power and money of the NRA. Worse, both Lanza and Holmes received psychiatric treatments at various times as have most school/public shooters that seems to have made them much worse given their dispositions. One teacher noted that Lanza’s violent writings in later elementary school indicated he may have antisocial tendencies while Holmes’ narcissism was also noted when he failed an exam!
Given all the corruption in biopsychiatry exposed and lamented by Dr. Nardo and countless others including you, you have said you question if you think it is a good idea to give such huge power to the APA/profession and your average psychiatrist who sees patients briefly to give them a quick diagnosis from the DSM manual now declared invalid and a prescription for psychiatric drugs, which have dubious safety and efficacy not to mention any specific cures for the label given. Obviously, the more serious DSM labels like bipolar used to require life long treatment are far more lucrative, so they are doled out far more frequently resulting in an epidemic of over diagnosis of bipolar admitted by many concerned experts like Dr. Nardo. Dr. David Healy, Dr. Allen Frances, Dr. Joanna Moncrieff and many others not to mention its lack of validity in the first place. Isn’t this in itself a conflict of interest?
Based on your blogs and comments, I believe that you and Dr. Nardo among others truly agonize over the best interests of those you encounter in terms of your questioning over diagnosis of bipolar, depression and other labels and what kind of help will be most beneficial even with the worst problems/crises such as psychosis for each individual with full informed consent while being careful to give the lowest and safest dose possible when you feel it is essential for one’s safety and other reasons.
Sadly, I don’t think the majority of biopsychiatrists are as conscientious as you and Dr. Nardo. You yourself have questioned if psychiatry should have such power given all the conflicts of interest and down right fraud that have been uncovered and reported by Dr. Nardo and so many others on this blog and elsewhere.
I would be interested to hear your view on this while I won’t deny that I would hope you are against such a draconian law when one considers that abused, bullied, mobbed and traumatized children and adults (the majority women) are routinely misdiagnosed with bipolar, ADHD, depression and other very damaging stigmas used to justify harmful psychiatric drugs often as a life sentence this horrible law would make permanent. I also would hope and plead that you would use your knowledge and excellent reputation as a psychiatrist to protest this law to any government officials voting on this law that you can contact. Just when you and Robert Whitaker along with Dr. Thomas Insel point out that all evidence points to great harm when neuroleptics are forced on all people for life and many people do not require this, but rather, have much better outcomes with low doses and tapering off, they will be doomed for life to suffer all the lethal effects of these drugs including early death by 25 years on average. Again, the real horror is those stigmatized and drugged when they never had “severe mental illness” in the first place as Dr. Allen Frances points out in his book, Saving Normal.
I can see where you would find the great amount of anger here very upsetting and off putting, but I don’t think it is directed at you at all, but rather, those psychiatrists who blindly treat their patients in assembly line fashion while doling out life destroying stigmas and toxic drugs without much if any thought to enhance their own status and finances at the huge expense of others’ very lives. Such a psychiatrist only doing assembly line 15 minute med checks after giving a quick DSM label to preserve his income was featured in the New York Times and cited by Dr. Nardo. It was pretty obnoxious to say the least given he didn’t know his patients’ names or anything else about them while refusing to talk to them anyway other than about drugs alone. I don’t see you or Dr. Nardo falling into this category at all whatsoever and I have a high respect for you both though I may not agree with you on everything.
At the same time, you say you deal mostly with psychosis, which can be very challenging for even family and others, so since I have not walked in your shoes or those of your patients, I am in no position to judge you though I can’t say that is true of other far less dedicated psychiatrists than you. It is obvious to me and others that you take your work and patients very seriously and you do your utmost best to keep as up to date as possible, to be willing to change as new research warrants no matter how much it may challenge sacred cows and show compassion and empathy for those you try very hard to help.
Again, we appreciate your being here and struggling with these very difficult, challenging issues with us and in spite of us!
Thank you for your consideration.
I am not put off by the anger here and in general people have been pretty respectful even when we have disagreements. As you say, it is hard to walk in another person’s shoes and I understand that many people are angry not only about the treatment they have received but also at the less than truthful answers they have been given by doctors.
I am not an expert in the legislation but from what I have read, I do not support it. At the same time, I try very hard to not be hypocritical in my positions and to not say something in one setting that I would not say in another. Vermont does have strong protections in place but they do have outpatient orders for treatment. They are not terribly effective in many ways but they have them; I am part of that system. I have committed people to hospitals when I did not have a safe alternative. In Oryx Cohen’s blog there is a comment from a mother who described the challenges she has faced when her child was psychotic. Voluntary interventions were not helpful and as a family member she was left in an extremely challenging and difficult situation. I have witnessed these kinds of situations and I would never criticize a parent who is struggling and worried about her child. VT will have a Soteria program in the next year. I have been a supporter of this program. However, I have known people who just refuse everything. They are in distress and their families are frightened and in despair. I strongly support voluntary peer respite. This bill would gut many peer programs and that would be a bad thing for us all. But, at least in my state, peer respite has limits on who they feel they can safely help. I still do not know how to help some people who refuse all of these options but are not safe.
In VT, the outpatient orders do not have much of an impact on forcing people to take drugs they do not want to take because the state does not really want to hospitalize anyone. Sometimes people are put on these orders as a kind of window dressing – it gives the illusion that something is being done.
This is not a very coherent answer and I admit I am deeply ambivalent about this.
Thanks for your very thoughtful response demonstrating the type of great concern you have when considering the difficult issues posed by the recent power grab by the biopsychiatry/Big Pharma/government cartel for social control and other victim blaming, scapegoating agendas in lieu of gun control and other real violence prevention.
Based on your response, it appears you support the Soteria / Open Dialog type alternatives, but when people are too “far gone” into extreme psychosis and/or severe emotional distress, options are much more limited to emergency ones of forced commitment and drugs during the emergency per your post. Your ambivalence came through because it was hard for me to really know where you stand in that I’m not sure whether the new law would help you help the people in greatest danger based on your approach of using the least amount of drugs including none ultimately given that you indicate that such outpatient orders are pretty much window dressing without much impact on forcing people to take drugs since they don’t want to hospitalize anyone. If that is now the case, do you think the new law will change what you describe here?
In my opinion, the latest attempts by fascist people like Fuller Torrey, Sally Satel, Tim Murphy and others to scapegoat people suffering from increasingly gross inequality, poverty, trauma, injustice, racism, sexism and other social/environmental stressors denied by the DSM/Big Pharma paradigm completely are just another vilification of the real victims while using such tragedies as the recent public shootings by those like Lanza seemingly a budding sociopath with a mother with questionable sanity herself, to rob the majority of people of their democratic, civil and human rights just as Bush did with his bogus WMD ploy to invade Iraq and rob U.S. citizens of their rights to privacy and others. The recent exploits of the NSA’s huge spying and rights violations exposed by Snowden is also an example of this that affects us all as psychopaths increasingly hijack and control the globe as evident in the book and DVD, The Corporation with Dr. Robert Hare, world authority on psychopathy, agreeing they could qualify as psychopathic. It appears that the fate of the so called mentally ill now is similar to that of the so called mentally ill Germany including gay people, gypsies, lower IQ’s, less able bodied for work and many others gassed to death by the Nazi doctors before the Holocaust; they were just the initial canaries in the coal mine with the worst human rights violations ever that are occurring now as well in the guise of public safety, a poor/unjust economy, etc.
Anyway, do you see this new law offering grants for more ACT programs and other use of force by the mental health system as giving you power you need to help the people experiencing the worst situations while they refuse all options while not safe? Or do you think the problems you cite would still hold true despite this new law? Tim Murphy’s complete proposed law is more scary in that it appears people will not even have the right to kangaroo courts to challenge what can often be bogus bipolar and other stigmas to aid and abet abusers, narcissists and others in power including parents, spouses, bosses, medical general/mental health experts and many other perpetrators.
The problem is that I don’t think those like you, Dr. Nardo, Dr. Breggin and many others would abuse this new law any more than they have abused the existing rights violating laws for the “mentally ill.” My real concern is that given all the exposed corruption in biopsychiatry and its KOL’s colluding with Big Pharma/Business including even its Chief, Dr. Thomas Insel, and most biopsychiatrists advocating the DSM forced stigma and drugging agenda to maintain the status quo, I don’t think all medical/mental experts should be given should huge powers over people’s lives. Now, “Murphy’s Law” is even apparently including regular doctors and others with such huge powers over people for “mental health.” What scares me is that if this continues to be allowed and expanded, pretty soon you and I will be ordered to have our statin drugs, flu shots and/or chemotherapy forced on us against our will with forced hospitalizations or ACT visits from so called professionals. Some of this is already happening with people being fired for refusing dangerous, useless flu shots at work and/or doctors firing patients for refusing useless, dangerous statins, etc. You and I have discussed these dilemmas that can affect both general medicine and psychiatry and it does seem that the worst of biopsychiatry has had a very bad influence on the worst in general medicine in my opinion.
The UN has judged the U.S. as cruel, inhuman and degrading to the poor and homeless:
The U.N. has expressed contempt for the U.S. criminalizing homelessness and other signs of poverty. Sadly, the medicalization of such poverty is also obvious given that the victims in this article are described as “mentally ill.” This is why I detest that and other mental stigmas since I think a few weeks out on the streets homeless, broke and ostracized probably BECAUSE of so called mental health degradation/ostracism rituals and toxic drugs, many biopsychiatrists would fare just as badly with severe emotional distress and trauma symptoms and far worse most likely given their far superior economic prospects and lives for the most part.
Anyway, thanks for your very honest response and empathy/understanding about why some of us are so mad, the double connotation of mad right in this web site while feeling crazy and angry at the same time given all the lies, gas lighting, real harm, huge losses and despicable fraud that have been inflicted on so many people here and elsewhere in the name of mental health.
I came from an era where/when doctors were totally trusted and greatly respected just like the priests in the Catholic Church, so it’s been pretty shocking and difficult to face the truth and learn that “all that glitters isn’t gold.” So, I can assure you I was never the type to attack the usual authorities, but rather, was taught to respect and even fear their “god-like status” by parents and others. So, the worst part of the huge excesses of certain professions or “priesthoods” and corporations like Big Pharma is described by Bob Whitaker when he shows how such authorities had gained a lot of trust based on successes like antibiotics by doctors and drug companies that was later totally betrayed and destroyed with all the excesses of biopsychiatry and Big Pharma with general medicine following suit. As noted before, it is true that all of medicine has gotten corrupt in many ways, but due to psychiatry’s ability to destroy people with invalid stigmas that isolate and ostracize them to force toxic drugs and civil/human/democratic rights violations in the guise of mental health in collusion with others in power for social control as described by Dr. Joanna Moncrieff and many others.
Anyway, I find this very scary for current and future generations of our children in particular as so called democracies become more and more fascist and dishonest about their real agenda. What do you think? Do you have a feel for how younger medical students and/or recently graduated psychiatrists and others view such issues?
I’m feeling pretty incoherent myself now since this is such a difficult issue with such huge implications and risks for our children and their children having any real human, civil or democratic rights. I sure don’t envy them for what appears to be in store for them.
Finally, I appreciate your understanding that many people here have suffered much betrayal, lying and harm by those who aren’t here to answer for it. The problem is that like when security systems are being put in place, they don’t count on the most honest, diligent person for their design, but often engage real hackers to try to break their codes to ensure safety for all. Thus, any new powers for all psychiatrists and others in our increasingly narcissistic culture (Christopher Lasch) should be based on what the worst abuse of such powers could generate rather than the rare cases when the best practices might be used by the most ethical people.
Anyway, I’ve rambled enough here. Do you have any new thoughts now that this latest assault on human rights has been voted in with very little openness and no real discussion?
Sandra I want to ask what you think of this rise in use of these dangerous drugs as adjunct to antidepressants or for other uses such as sleep aids, or simply because they cannot figure out what else to put you on so they decide the “trial and error” approach.
If you are looking at people like me who have been on these drugs for decades, remember that trial and error has always been their approach. So I can recall the day when I was in the hospital and the doc came in. I had told him over and over I had an eating disorder but he never understood what an eating disorder was or that it was anything more than a “rich college student’s disease.” It was 1981 and no one had heard of this rare, exotic disease. I saw him looking through the PDR at each pretty-colored page filled with photos of pills. I saw him shake his head. He was clueless, and began prescribing at random, first Mellaril, then when my pulse ran too high he put me on Serax, then I got taken of that and put on Thorazine. I paced around from akathesia, so they decided I was behaving like a schizophrenic. I was stuck with that because they couldn’t think of anything else. Other than side effects, antipsychotics did nothing for me because I wasn’t psychotic, and it did nothing for my eating disorder. I was stuck on antipsychotic medication for three decades!
I don’t think I am the only one who was given these drugs because they couldn’t think of anything else. My records adapted themselves, I suppose, to accommodate whichever way they wanted to think about me without taking anything I had to say into account. The game of telephone is a cruel one.
I think we need to be judicious about how use of these drugs no matter what the condition is.
Amen. Great post there and response!
Sandy, Have you read Dr. Grace Jackson’s books Rethinking Psychiatric Drugs and Drug- Induced Dementia: A Perfect Crime? She is very highly regarded and these books have gotten great reviews.
Also, one of a zillion sites pointing out the connection between psych drugs and mass shooters:
Another great, enlightening book on biopsychiatry, drug companies and its dangerous psych drugs with several alternatives to achieve emotional well being:
Often the “official” rules state things such as neuroleptics could be withdrawn maybe after a year or two of the acute use, or that they should be used in the smallest possible dose in order to prevent detrimental effects, etc. Psychiatrists and other specialists often claim that this is what is done, but it simply does not seem to be the case in practice. In that Wunderink study they had a group where the amount of neuroleptics was intentionally kept to minimum. Sandra has made her own experiments, with her great intuition, insight, intelligence, etc. There we have people who had “intention” to do this. If the actual clinical practice usually seems to overshoot even the current “official” rules, how could we teach the current system to give these drugs more judiciously? It seems that there has been a constant “official propaganda” among doctors and public over many years that benzos should not be used except in some cases, and it may have worked. Perhaps I don’t see that kind of a “propaganda” happening inside of psychiatry among neuroleptics at least as long as the current neuroleptics are profitable. In short, I don’t see why the mass of the current care would strive to give people the minimum amount of neuroleptics, or how how to make it do so.
Just to elucidate my point, what kind of a culture would we need in common psychiatric care so that it would, for instance, actively or intentionally try to “optimally” minimise the use neuroleptics and other drugs (amount of patients, duration, amount of drug, etc)?
I just saw this since it was re-posted. I think a shift that needs to be made is to put the risk of recurrence of psychosis more on par with some of the serious long term risks. For many reasons this is hard for clinicians, and I think for some families as well as those who have experienced psychosis. I discuss this a bit at the end of my most recent post. Psychosis is often quite dramatic. It is not subtle, it happens right in front of you. And if a person has to be in a hospital, the cost is high. We are always under pressure to minimize cost and those pressures are put more on short term outcomes. The long term side effects are in many ways more subtle.When things happen over many years, it is harder to feel comfortable with correlations. So if a person is not working or develops heart disease, one can attribute it to other factors. Without the long term studies, it is harder to attribute it to the effect of drugs (especially when we have been trained that psychosis itself often leads to long term disability and impaired function).
Thanks for the reply, Sandra. “Since it was re-posted” .. I suppose there was some glitch or issue with the forum software if you saw this message re-posted just after I had sent some messages to your new post.