Wednesday, October 23, 2019

Comments by N.I.

Showing 56 of 56 comments.

  • I’ve not been active on this site for a long while. Every once in a while I’d lurk about, and find myself mostly overwhelmed by the sheer volume of resources and commentary that has accumulated so remarkably on this site over the past several years. I wish I had the time and energy to engage them. When I first came here I was not looking as much for kindred spirits as for information about the risks of neuroleptics and the courage to try to walk away from them (I’ve so far managed to go down 85%). And then, mostly, to try negotiate some kind of relationship with psychiatry that I could live with (still working on that). But this piece, which was the first I saw upon returning to the site, and your prior piece, immediately resonated in new ways. Your account of your own (what I will refer, for simplicity’s sake as) psychosis in the prior piece was strikingly and amusingly familiar, and was the secret kindness and solidarity of which you speak in this piece. As much as my own partner and other loved ones offer in the way of insight and protection, you remind me that there is no better tonic than a kindred tale for those of us living in the shadows.

  • Thanks for this piece – it strongly resonated with me on a personal level. My own first psychosis came later than is customary , just past 30. I would say that my greatest relationship challenges at the time involved friends and peers from whose lives mine had diverged, more than any romantic crisis. But the seeds had been planted well beforehand , in ways that your research corroborates.

    Many mental health professionals will generally respond to points such as yours with the argument that trauma suffered during development only increases the likelihood that illness will be triggered, and amplifies symptoms. In other words, some in the population of those who are defective were lucky enough to have advantages in life that enabled them to prevent their defects from manifesting.

    One might think that believing in psychiatry, or In a diagnosis (rightly or wrongly) could help an individual with a history of trauma / alienation to ward away beliefs (theirs and others’) that they lack strength or resiliency in the face of adversity. But instead, whether the individual feels helped by psychiatry or medication or not, seeking help from either serves as a badge of shame, in just about any environment. There is nothing redeeming to anyone about becoming a psychiatric patient.

    As many have said here, and as other cultural practices and open dialogue have shown, and as your piece underscores, there is much that psychiatry can learn about how to listen to the substance of a person’s thoughts and beliefs, especially while in the throes of psychosis.

  • Thanks for posting this, Dr. Hickey. Horrible record, and business as usual, indeed. No argument there.

    But from the purely selfish standpoint of, what does it mean to someone diagnosed with bipolar I, this lawsuit seems to say very little about why the drug shouldn’t be used to treat that diagnosis. As you know better than I, the FDA has drawn a distinction between the use of this drug for bipolar I and II, and has effectively concluded that off-label marketing for bipolar I, while perhaps illegal at one time, was beneficial. In other words, some group of scientists at the FDA (undoubtedly industry influenced to some degree, but that is a different point) decided that there exists sufficient evidence that this drug helps to effectively regulate “bipolar I” moods (for those who have concluded such regulation is desirable), though not “bipolar 2” moods. Albeit, insofar as “bipolar 2” is a fake disease, as some have persuasively suggested, it makes sense that the FDA could not be convinced to add the indication.

    The side effects of “death” and “Stevens Johnson Syndrome,” while surely as severe as they get, seem incredibly rare and so it would be reasonable for some of us (without more) to conclude that the benefits outweigh the potential risks. I have not seen the same compelling evidence of long and short term harm of the sort you see with neuroleptics. Absent such evidence, and absent a belief that all of psychiatry is bunk, and absent a belief that the FDA is no more than a shill for the industry, and with so much at stake, it is hard for many of us to justify to ourselves and to our families that we should not take the risk of taking this drug, even if we’ve been convinced that neuroleptics are not worth the risk.

    What say you?

  • Margaret,

    I appreciate your comments. A few years into this journey now, I find myself having to reckon with the feeling that the professional accomplishments that I have fought so hard to reclaim and redouble on may operate as a kind of ceiling limiting how far I can go with tapering and minimization of psychiatric drugs. Perceived professional accomplishments may be healing and feel vindicating after a long fall, but over time these are diminishing returns insofar as the accompanying burdens of work create conditions that not only require greater use of psychiatric medication in one’s overall approach, but crowd out other life goals. For me, those goals include, yes foremost family, but, overall, the intertwined benefits of joy and health. I’ve found that neuroleptics (at least in higher doses), on balance, undercut both of these goals. And, to a degree unknowable, the evident benefits of the anti-seizure drugs I take, may also be offset by long term harms. Based upon the literature I suspect that, even for me, there may be effective substitutes to mood-stabilizer drugs under the right conditions and with the assistance of a willing MacGyver.

    The further distance of which you speak that I wish to travel (i.e. including further reductions in the medications) may well require a “needs-adapted approach” that addresses needs beyond emotional priming for stressful work conditions. It may be that the “proving them wrong” part of my pursuit of professional goals overestimates their overall value, to the detriment of joy and health. But more challenging of a dilemma (in light of the symbiotic relationship between my meds, my work, and my moods) is how to weigh the goal of eliminating psychiatric drugs with that of building family security, starting from a substantial financial deficit.

    A recurring theme that I have returned to in my posts on this blog has been that I reject the notion that “consensual reality” is a bad thing. As an update, I would say that, while I have no desire to believe things that are not true or see things that are not there, I also do not enthusiastically consent to our culture’s celebration of a relentless pursuit of power and wealth (and perceived respectability) through work, regardless of one’s emotional proclivities (via the combination of nature and nurture).

  • I’ve not posted nor followed this site for a long while, but wanted to check in. Sandra, the other bloggers, and the users of this site provide a fantastic public service, and I credit the blog for giving me the courage to taper down from a 300mg dose of Seroqual about 3 years ago to the level I am at now, i.e. hovering at 50mg – 75mg, but still with a 200mg dose of Lamictal. I’ll try not rehash my story too much, other than to say that in 2003 I had hit rock bottom, after plummeting from being a high-powered professional with an elite education to living in my parents’ basement, unemployed as well as both economically and volitionally bankrupt. Between 2003 and 2012 I had managed, on meds (including 400mg-300mg of Seroquel) to rise up to greater heights than previously, as well as get married and have 2 kids. But then, after finding a prominent psychiatrist who was willing to taper me off of Seroquel I began to experience all of the feelings of fury and and joy and conscientization that so many on this site have so eloquently expressed, albeit tempered by a kind of fear and skepticism and conservatism re medication not shared by many of you. I continued to rise, far greater even than previously, and grow back into myself. I was (and remain) alive and looking outward into the future again. But then I reached a stage where my thinking and feeling had become less reliable than it had been for many years (other than during a period when I unsuccessfully tried to switch to Geodon). I found myself again shifting into unmistakable high(er)s and low(er)s, but, with the help of this psychiatrist who served equally as a multidisciplinary talk therapist, this time was able to navigate them successfully without being hospitalized and while retaining the goal of eliminating antipsychotics entirely. I have glimpsed the unwanted (by me) places I could descend or ascend into but then have been able to put on the brakes, in a way that had never before been possible. I find myself mostly as I want to be but sometimes in this precarious place of non-linear emotional and cognitive teetering, but managbly. I attribute this newfound capability primarily to the wisdom I have obtained from experience (most of all) and the help of a highly skilled, independent, fiercely empirical, methodologically and theoretically MacGyver-like medical professional, very much like Sandra has revealed herself to be over the years on this blog. Ambivalently, self-defeatedly and grudgingly but ultimately volitionally I have increased the meds in very small measures for very short periods, in moments when it seemed that what I was doing would not be enough. I chose this route only because, empirically, meds had sometimes been correlated with avoidance of those unwanted places, in the short term and the stakes are astronomical. But my insistence upon continuing to taper, with the psychiatrist’s support and encouragement, made it bearable, and even empowering. Of late I have become uncertain of whether I will ever reduce the dose from the 75/50mg level I have been hovering at because, frankly, I have not enjoyed what has unmistakenly felt like increased instability since around 125mg or so. The fluctuations have not gone unnoticed at work, and I my position there has been adversely affect to a degree, but mostly perceptually rather than substantively. In short, tapering has not taken me as far back into myself as I had hoped, and sometimes it has has correlated with those unwanted place to a significant degree. I also continue to fear greatly the long term cumulative effects of the Seroquel , despite the relatively low dose, as well as the unknowable (given our level of scientific understanding) short and long term effects of anti-seizure /mood-stabilizer drugs. Honestly I don’t know what all of that says about the competing theories and approaches that Sandra and other professionals like her have had the courage to grapple with. All I have is my will to survive and flourish, whatever it takes. By far the best step I have taken toward that end has been to work with that rare professional who is willing and capable of assisting my navigation through all of that, while honoring my directive to limit, and where feasible eliminate, psychiatric medication.

  • I don’t know that we disagree much. You do concede at least in at least one sentence, however grudgingly, that science has not ruled out the possibility that individuals may benefit from the mechanism of action of a psychoactitve drug rather than placebo or misunderstood source deriving other than from the brain, i.e. where you say that maybe “sometimes certain drugs work only on a subgroup of all people and will never be picked up by a population-wide study.” I also agree wholeheartedly with the view that “[s]o if you would like to strictly ‘follow the science’ you should take a precautionary principle and not use these drugs at all unless in most dire circumstances.” For these reason I am committed to weaning entirely off of neuroleptics — however cautiously. And, I am not committed to viewing my unwanted moods and perceptions as “disease.” I don’t care what the label is, I care about being functional and happy. Nor do I find forced medication tolerable in probably all circumstances (and, yes, it happened to me).

    In light of all of this, two critical questions, for me, are: (1) who ultimately should be relied upon dispositively as an authority on the science and medical standard of care to be followed by an individual having these experiences, in the absence of that person’s own qualifications to engage in empirical research and caregiving on their own? ; and (2) what is a “dire circumstance” that sufficiently balances the scale in favor of taking psychoactive drugs?

    I certainly have the freedom to try to wean off of the mood-stabilizer I remain on as well, whether assisted by others or not. But what if the highly regarded psychiatrist who has so effectively helped me to wean off of neuroleptics (and does so routinely with patients) strongly recommends against it? What should be the basis of disagreement with my practitioner? Read more books like Breggins’ and Whitaker’s? Should I read scientific studies? Go to a lab myself? Read Marcia Angell and plaintiffs’ lawsuits concerning Big Pharma’s misdeeds? If a respected physician other than a psychiatrist advises against my taking a medication, I will always research the basis, but there is a limit to where I will go. Eventually, one has to trust someone, and the degree of that trust necessarily factors into the cost-benefit analysis.

    What’s your view on Lamictal and why should I trust you?

  • Sorry I am late and perhaps too late to the discussion, but Andrew’s comments resonate with me. I have posted on this site before and my ambivalence (at best) about the perceived benefits of psychiatric medications are well documented. But what I find off-putting is the assumption that if one accepts that there may be some scientific basis supporting psychiatric drug use, then they are necessarily self-delusional or victims of deception. I am neither a doctor nor a scientist, but I have spoken with and read the work of some in both fields, and it seems clear reasonable minds can disagree on the validity of claims that, for some, the cost benefit analysi may weigh in favor of taking psychiatric drugs to some well-deliberated-upon degree and for a well-deliberated-upon term , over never taking them for any purpose or duration at all whatsoever. Many on this site, including unless I’m mistaken the author, take the latter view. I, myself, am not an absolutist. One can accept that the science remains as yet unconfirmed or even unknowable, without full-throatedly accepting a kind of “chemical imbalance” theory. Well-documented and scientifically rigorous observations that that medication — of some varieties in some doses and for some durations — eases distress for some are difficult to dismiss as merely the stuff of Big Pharma shareholder concerns, junk science, and a corrupt guild of psychiatrists.

    The paternalism and scientific presumptuousness that is inflicted upon those here whenever they so much as even suggest that the cost benefit analysis given what is currently known might weigh in favor for some is, as Andrew describes, off-putting. Very few who take such a position ever post, as a result. Are our views not valued? Is our role on this site merely to be benevolently deprogrammed? I”m not saying that the offense I describe is being done openly or even intentionally in this thread and manyothers, but it is beyond doubt that this is the subtext

    There is not the kind of scientific consensus in either direction on brain chemistry as there is, for example, on climate science. Maybe we’ll get there, in either direction, but we’re not there yet. I doubt we will, perhaps not for generations if ever. Whether some peoples’ extreme moods and/or perceptions may be derived from ideosyncracy and/or childhood trauma or something else, if medication in some measure, alongside other efforts, legitimately helps some people, then that conclusion need not be disparaged in the way that a psychiatrist might disparage the kinds of evidence we have pointed to on this site in the service of helping people.

  • I will be sure to go back and read more of this thread but I have read Sandy’s post and found myself, as I nearly always have upon reading Sandy’s posts, imagining what a positive impact she might have had on my life had I encountered her, or a medical professional like her, many years ago. The thoughtfulness, realism, compassion, skepticism, empiricism, humility, and gravitas, among many other good qualities, that she plainly brings to her work — much of which is devoted to help improve the lives and ease the suffering of people who are in distress and themselves asking for help — is far too rare in the world of psychiatry. And is absolutely necessary, for some of us.

    I began my own Adventures with Whitaker (and Breggin) about 1.5 years ago, around which time I began tapering off of the 300mg Seroquel dose I had been on for some 8 years. I have told my story in various forms on this site over the past two years, but as an update I remain 2/3 down from the level I was at, to 100mg (and will continue to reduce to zero, in time), but doubled my dosage of Lamictal from 200mg to 400mg daily. My reasons for agreeing to this this are complex but the result (empirically) has been that I am better psychologically than I have ever been in as an adult.

    Significantly, my mind has on occasion veered in directions that I have not wanted to go (in my own considered and informed judgment), both in regard to feelings bright and dark. Now I am it seems settling within what is beginning to feel like a kind of bandwidth, within which I have been able to function effectively and consistently. The consistently part means that I am at my best self within this range. Without the consistency, I would prefer to dwell in the bright places nearly at all times. Maybe it will be less linear, I don’t know. What I do know is that I have been able to keep my life together and have somehow ended a string of disastrous and soul crushing reversals.

    I view myself as someone who feels and thinks very intensely (whatever one wants to call such a person). But because of the responsibilities I have taken on in life and the power that others have over me over which I have no control, as well as social norms that I have chosen to embrace (in my considered and informed judgment), I am not an abolitionist. As in pretty much all matters, I strive to bring thoughtfulness, realism, compassion, skepticism, empiricism, humility, gravitas and, most importantly, lessons from my own personal experiences and those of other folks including many of you all, to the way I view the question of psychiatry. In recent years, that approach has served me quite well.

  • This is an eye opening blog post I came across that captures the mindset of some of the lawyers who represent Big Pharma. It celebrates a judicial opinion throwing out a plaintiff’s case alleging that Zyprexa caused him to suffer from TD. The author’s tone is dismissive, mocking and, just, ugly. Evidently Eli Lilly’s lawyers were successfully able to convince the court that the research on the relationship between neuroleptics and TD is basically junk science, and that drug labels say all that they need to say about TD.

    http://druganddevicelaw.blogspot.com/2014/03/eighth-circuit-zyprexa-decision-applies.html

  • In the interest of maintaining the integrity of the “case report” of sorts, I didn’t mean to suggest in my note to larmac that my episodes did not involve significant degrees of psychosis. They most certainly did. Immediately preceding each hospitalization, as I’ve related elsewhere on the site, I experienced extreme paranoid and false beliefs, under the influence of which every sensory perception became over time increasingly distorted so that they would inexorably become consistent with the beliefs. In the later stages there was some limited voice hearing, and vision seeing. It’s because I continued to operate under this belief system for many weeks, absent overtly evident accompanying euphoria or melancholy, that I received the schizo-affective/bipolar type diagnosis (which, for a variety of reasons, I have concluded in retrospect to have involved little more than box-checking that an amateur could have performed). Over the years my experiences were much more often in the nature of euphoria and melancholy, but only when I harbored false beliefs would I be (tranquilized and) hospitalized.

  • It’s true that the empowerment of deciding for myself has itself made a difference in my recovery. And I feel that I must add that, so has the integration of psychiatry with talk therapy, and so has the absence of feelings resembling depression made a difference (to guard against which I remain on a mood stabilizer).

    But there’s been another result of that empowerment which carries great independent personal significance and consequence: vindication. It is only because I demanded of myself and my psychiatrist a willingness to help me with a taper that it has been possible for me to regain some of the self that had been lost. I decided to reject, finally, the admonishment and dismissiveness of my well-meaning psychiatrist and well-meaning others of the concerns I had raised about side-effects. As it turned out, they were not imagined, or wholly subjective, or neurotic. Being stable and “successful” in some measure, even in large measure, did not have to be enough. I demand and deserve myself back and maybe I can recover some of what was through these efforts, for the long term.

  • larmac,

    I am so sorry to hear about the loss of your son. I can’t even fathom what you and your family must have gone through and my heart reaches out to you. I want to say to you that I fully acknowledge and agree with Ted’s observation that luck has played a very significant role in helping my story to, thus far, remain a positive one. It’s very largely because of my elite education, which not everyone has the benefit of, that I was given another chance to succeed in my career. Without it, my life — at least that aspect of my life — would have remained in a shambles in many respects, which accompanied by more negative social and other negative consequences. I also do not deserve the credit you give me for being “strong.” When I used the word “strong” in my account, I meant only that fighting emotional and cognitive blunting, once it has been alleviated, seems to have improved my ability to feel and think, because I am making an effort to do more without needing to. I was on a dose that was on the boundary of “therapeutic,” and then for the last year or more preceding the setback in 2010, I convinced my then psychiatrist to put me on a lower “maintenance dose.” This coupled by the fact that my (let’s call them, for ease of communication) “delusions and hallucinations” were much less significant than my “manic and depressive symptoms”. Which is quite different than the in many ways more challenging experiences of many on this site who have experienced so called “symptoms of schizophrenia.”

    Any of us who have, for whatever the reasons, ended up in psychiatric treatment or in the throes of a debilitating psychological condition must be stronger than most in some ways. This is so even once out of the throes, because of the devastation that these experiences can have one ones lives. And that includes people who are no longer here to fight the terrible and olympian battle any longer, for whatever the reasons. Including your son, who has earned my respect based upon your story.

  • Thanks so much for sharing these data and anecdotes. There is no getting around the fact that the lessons of my example may be interpreted in different ways, depending on one’s perspective and investment in it. Still, in significant ways, my example seems consistent with your results.

    My first episode, cannibis-induced, was in 2001, when I was hospitalized but discontinued treatment with neuroleptics soon after discharge. I had been diagnosed with bipolar I. My second in 2003, also cannibis-induced, also resulted in hospitalization, after which I was willing to remain on what was later described to me as a sub-therapeutic dose of a neuroleptic. My third episode, 2004, cannibis-induced, resulted in hospitalization, and upon discharge I agreed to remain on a very high dose of the neuroleptic. I was diagnosed with schizo-affective disorder at that time. The years between 2001 and 2004 were the very worst of all of my years professionally and socially. Following the third hospitalization, I stopped taking one illegal drug (which I had started taking regularly only in about 2000) and resolved to take another legal one, a neuroleptic, plus a mood-stabilizer. I’ve recounted in other posts my experiences since staying on the neuroleptic. In short, between 2004 and 2010, I accomplished more professionally and socially than ever before, which in my case was a substantial achievement. I re-acquired during that period and continue to work in what many would view as in a prominent professional position. However, in the years leading to 2010 I became increasingly disturbed by what felt like a cognitive and emotional deterioration that had earlier been more subtle but had grown to become unmistakable. Negative professional and social consequences had ensued. As previously described, an attempt to switch neuroleptics to reduce side effects in 2010 had failed miserably, causing debilitating anxiety and panic attacks and culminating in what felt like depression. I returned to my previous state upon resuming the original neuroleptic, but not before the emotional instability had dealt a terrible blow to my marriage. In 2012, I began a new position, in part to seek anonymity again, and I began to taper off of the neuroleptic in January of 2013. I gained the courage to do so in large part as the result of reading Whitaker, your posts, those of others on the site, and those of my fellow commenters. I had fired my psychiatrist and was re-diagnosed as bipolar-I in January, and told that the schizo-affective diagnosis was a terrible mistake. As previously reported, the positive effects of tapering have been, just, extraordinary. Positive cognitive effects, and positive emotional effects, consistent with what I’d read in Breggin and Whitaker. Among other subjectively perceived benefits, it is as if all of the extra work I had to do cognitively and emotionally to try to embody myself has developed musculature that make me stronger in those ways on lower doses. That is, stronger than would have been the case had I not been fighting, in vain, to break through the fog all of these years. I say this not at all to suggest that the drugs were good for me in this way, but to underscore the degree to which the side-effects truly were debilitating (apart from the metabolic side effects that big pharma must now admit after having paid billions for lying about it). I had come down 1/3 by September, and reduced to 1/2 in October. Immediately thereafter I entered into a period of incredible intensity at work, and, upon experiencing a familiar sense of agitation and exuberance, I very reluctantly agreed to return to the 1/3 down dosage a few weeks ago. I agreed to do so on the condition that my doctor would support resumption of the taper in a short term, and he advised that this was always his intention, and so I’m now counting down the days. I find it at once chilling, appalling and despairing that I can discern the deterioration in cognitive ability resulting from my return to 1/3 from 1/2. Meanwhile, after only one year on the job, I’ve been promoted to an even higher level of authority, after having functioned easily at my highest level in my professional career. This fact, one must acknowledge, is more objective in nature.

    So, I enthusiastically support the practice of working with a psychiatrist on a slow taper but — if desired by the person in question, with full disclosure — a persistent one. I also support, from personal experience, a willingness on the part of the person to move backwards, in extraordinary circumstances like those I felt I was in. Circumstances in which so much was at stake, that a minor setback — to guard against a far more damaging one — was well worth it. But only on the condition that the psychiatrist doesn’t do what psychiatrists so often accuse us of doing: abruptly stop the taper (as opposed to the medication) based upon a premature conclusion that not to do so would end badly. Without this understanding, I would fire my psychiatrist.

    I am a sample size of one, but it must be and is is enough for me.

    Thanks again for your very important work.

  • I would find it comical were it not so tragic that psychiatry readily endorses the theory that illegal drugs such as cannabis and PCP induce the experiences referred to as psychosis, without fully understanding the science but happy to rely upon the what is obvious merely from observation. Yet when it comes to legal (and wildly profitable) neuroleptic drugs, the same or better evidence (both scientific and observable to a layperson) shows that addiction results in withdrawal-induced psychosis, then psychiatry makes every effort to establish a consensus that there exists insufficient evidence of the connection. Including efforts in the form of interpreting damning scientific evidence as support for the opposite proposition: i.e. that psychosis following discontinuation proves that the psychosis was biologically based. And what is more, psychiatry then wants to have it both ways: illegal drugs, which are bad, cause every bad thing that was ever suspected of them, including psychosis. But, no matter. Even if a psychosis was precipitated by an illegal drug, psychiatry deems that the person still has an illness. The illegal drug use, it is explained, was just a trigger of a pre-existing biological propensity to suffer from a mental illness. This is nothing new to this audience, but it is truly remarkable, as others here have observed, that there was absolutely no discussion whatsoever on the program of the possibility that the conduct might have been influenced by powerful, brain altering drugs. If Lanza had taken PCP, the drug would have been to blame and all over the news. Then, quietly and not on the news, had Lanza survived, it would be established that, PCP notwithstanding, the PCP triggered a pre-existing disorder. Though if were on the news, it would be because his defense attorneys would have raised it as an insanity defense. Which would, in this environment, play very well to a jury. In the end, the ATM that is the market for dangerous legal neuroleptic drugs keeps spitting out cash to line the pockets of Big Pharma, while enormous taxpayer funds are directed at the effort of trying to eliminate and ramp up the criminalization of other dangerous, but illegal other drugs.

  • I would find it comical were it not so tragic that psychiatry readily endorses the theory that illegal drugs such as cannabis and PCP induce the experiences referred to as psychosis, without fully understanding the science but happy to rely upon the what is obvious merely from observation. Yet when it comes to legal (and wildly profitable) neuroleptic drugs, the same or better evidence (both scientific and observable to a layperson) shows that addiction results in withdrawal-induced psychosis, then psychiatry makes every effort to establish a consensus that there exists insufficient evidence of the connection. Including efforts in the form of interpreting damning scientific evidence as support for the opposite proposition: i.e. that psychosis following discontinuation proves that the psychosis was biologically based. And what is more, psychiatry is then happy to have it both ways: illegal drugs, which are bad, cause every bad thing that was ever suspected of them, including psychosis. But, no matter. Even if a psychosis was precipitated by an illegal drug, psychiatry deems that the person still has an illness. The illegal drug use, it is explained, was just a trigger of a pre-existing biological propensity to suffer from a mental illness. This is nothing new to this audience, but it is truly remarkable, as others here have observed, that there was absolutely no discussion whatsoever on the program of the possibility that the conduct might have been influenced by powerful, brain altering drugs. If Lanza had taken PCP, the drug would have been to blame and all over the news. Then, quietly and not on the news, had Lanza survived, it would be established that, PCP notwithstanding, the PCP triggered a pre-existing disorder. Though if were on the news, it would be because his defense attorneys would have raised it as an insanity defense. Which would, in this environment, play very well to a jury.

  • Let me clarify something so that I am not misunderstood. When I describe a standard of care in psychiatry and psychology which does not engage the beliefs of a person they perceive to be delusional, I mean while that person is out and about in the world and not confined against their will in a mental institution. So my comparison of your concern for the subjective beliefs of individuals to the concerns of other practitioners of psychiatry and psychology was not intended to suggest that this non-engagement is motivated by care for a person’s subjective beliefs it is the opposite. What I believe is in parallel is your concern for the subjective views and preferences of people and those who practice psychiatry in a beneficial way: that is honoring a fully informed person’s preference to be prescribed a psychiatric drug. In both instances, you and the good kind of psychiatrist, may have concerns about and objections to the course the individual is choosing. But you honor them nonetheless, and in this way the consequences are owned at least in part by the individual themselves. I would say, however, the less fully informed the individual is (i.e. about the risks of antipsychotics or the possibility that beliefs may be false),the more it is that the consequences are owned by the person giving the care.

    The other practice in my view can sometimes be highly problematic, but I think there still is some grey. That is, don’t challenge a person’s beliefs even if you think they are delusional while they are out in the world and free from confinement, because they simply are too irrational and delusional to be reasoned with. Instead, trick them into confinement in an institution, whereupon a psychiatrist assigned to them will be quite blunt about their disbelief, and will administer more and more antipsychotics until the beliefs are gone and forgotten. What is grey is that, if one does challenge a delusional person’s beliefs — let’s just use the sample size of two consisting of myself and my family member — then the challenger immediately can become part of delusions, i.e. another clandestine enemy. In that way, they become one less person who can help. No good answers, most certainly including confinement and medication. I agree with many here that this “solution” is not intended to serve the individual who is drugged and confined, but largely the people who don’t want to be bothered with them. And that this solution might be the worst of all for that person.

  • Sometime-friend-in-arms,I thought about but elected not to compare your behavior to that of a psychiatrist because in important ways it would be unfair and certainly off-putting to you. But there are ways in which your behavior does resemble that of a psychiatrist, and those include both favorable and unfavorable comparisons. What you share with the best of psychiatry is an appreciation of the complexity of engaging and trying to help a person to negotiate the kinds of beliefs such as mind control that sometimes we both agree are delusional. And in a way which values their subjective preferences. But what I view as familiarly problematic from my own experience in psychiatry is that you make assertions about a phenomenon affecting a narrow population which carry the imprimatur of credentialed authority yet are — even aside form the real possibly that they are insufficiently borne out by the evidence — made in a context and to an audience who may reasonably conclude that the assertion applies to a broader population: including themselves. Potentially to their great detriment. You in a way endorse ideas which at most concern an infinitesimal number of people — however unwittingly — “off-label” to a broader population as an antipsychotic might be prescribed to a person suffering from a traumatic life event. You also, from the heart but nevertheless in a way which may potentially be harmful, value the subjective perceptions of an individual irrespective of their mind state to such an extent that you would allow them to continue on a course of self-destruction and ruin. This is the very standard of care that is often followed in psychiatry (at least by people under whose care I have been). Do not challenge the person’s questionable views, lest they include you in their conspiracy, let them maintain and act on their beliefs until someone can figure out a way to inject them with a tranquilizer. While you are defiantly against the latter, here with strong basis in my view, the result of your refusal to engage has its own negative consequences.

    To address specifically what you have written, you suggest, without nearly enough evidence to warrant such a statement in this setting, that the belief Alexis may have been subject to government mind control experiments is a credible one. You make this suggestion, increasing its force, alongside references to the Manchurian Candidate films and admonitions against suspicions that his behavior was instead paranoic. Someone viewing that comment may reasonably interpret your authoritative endorsement, by way of analogy, as corroboration for their own beliefs about mind control which are very highly likely to be false. You claim that you’ve qualified your remarks with statements that the phenomenon is very small, yet also state that “it is true that there may be up to half a million person who are subjected to mind control experiments.” That this number is dwarfed by the number of people in the population does nothing to diminish the risk that this statement will be interpreted as strong corroboration for a paranoid person that their very special and unique case is among the half-million.

    Let me take a different example. If you or anyone else wishes to disparage me as someone who does not take people with these kinds of beliefs seriously then I will remind you that I have myself had these beliefs. Had I, at that time, read your comments on a site like this I most certainly would have viewed them as corroboration of the beliefs I had at the time that, among other things I have since confirmed with certainly were patently false, the government was controlling my mind. And I have also been on the other side of this phenomenon, when the closest of family members harboring similar beliefs. And, yes, when I challenged this person, I became part of those beliefs. There is no article written by anyone anywhere that could offer anything of merit in support of the view that this person’s beliefs might have been true. Some of those beliefs were about me. Just as I had, when in a similar mindset, developed false beliefs about loved ones who had challenged me and, over time as I remained in the mind state, whether they challenged me or not. This is why the standard of care adopted in psychiatry of sometimes not challenging beliefs perceived to be delusional, as it appears is your practice, is a treacherous one. What to do about a person who is set on a course of self-destruction if you want to help them? Yes, I would be among your examples of people who would feel betrayed by your challenging of my beliefs. But in retrospect, I wish someone had challenged me sooner (and then figured out another way to set me on the right course than via treatment with antipsychotics).

    There are no easy answers to the question how to deal with someone in these mind states. I know you understand this and I know your motivations are giving and sound. But there is a context-specific cost benefit analysis which must be deployed when communicating with people in the throes. Whether the communication is direct or indirect. “Indirect” communication here meaning the endorsement by credentialed authorities of insufficiently established and marginally applicable ideas in ways which may reasonably be perceived (especially by those whose mind states are highly unreasonable) as corroborative of falsehoods about their own individual circumstances.

  • Seth, we must again agree to disagree. It strikes me as irresponsible for someone as obviously intelligent, learned and well-credentialed as you to broadcast to an audience likely to include a large number of people experiencing or familiar with [psychosis] the message that you broadcast. You say a lot of things but among them is the unmistakable message to a person experiencing psychosis that, if they believe the government is controlling their mind, they have good reason to believe their belief is true. The likelihood that such a thing is happening to the average reader — the vast majority of reads of this site — is far to low to risk setting them down the dangerous and destructive road that such beliefs can take them. Including even the fulfillment of the prophecy of persecution that can result, post 9/11, from an anti-terrorism-obsessed and trigger-happy police officer or other grunt who observes a person obsessed with espionage and government plots. You as an MIA author, experienced therapist and PhD, are different from other commentators. You are viewed as an authority in a way that is much more likely to have an impact on a given individual’s views on the truthfulness of their beliefs. Yet, notwithstanding what you may know about the experiences of some of the people you’ve worked with whom you believe were targeted, it is beyond all doubt that if such targeting is occurring that it is occurring on a small scale that is inapplicable to, at minimum, nearly all of the readers of this site. Readers who may believe the government is controlling their minds who read your observations about things you’ve read and interactions you’ve had with others may easily become convinced that their unique beliefs, unknown to you or me, are true. But because it’s overwhelmingly likely they’re not true, they are being harmed by you.

  • My quarrel is not with claims that such technology may exist, or with ideas about the capacity of the United States to act in diabolical ways. Let’s assume that some people who believe they are being persecuted by clandestine government forces who have used mind control technology are correct in their beliefs. There are millions of people around the globe who harbor such beliefs while exhibiting other signs of experiencing distinct, identifiable mind states that about which there is wide consensus on this site. Consensus that the mind states often call for a form of treatment, ideally perhaps Open Dialogue. How many of those millions should we believe are among those being persecuted? If any, it must be a tiny fraction. If this is so, then it is extremely dangerous to tell the 99+% of people in those mind states that their beliefs about persecution are true? Do you not see the consequences of being wrong about that? Should those people be encouraged to remain in their extreme states of stress rather than to attempt to resolve the personal crisis they are undergoing? Let’s also assume that none of these people should be medicated. Isn’t it against the self-interest of this individual and of this important cause not to support that individual’s need to undergo the cathartic self-adjustment that the beliefs evidence is urgently needed (as there also seems to be a wide consensus on this site is the process at play)? Isn’t even the suggestion on a site like this, where people in or familiar with these mind states congregate, that these beliefs are true, wrongminded? It would not be, only if it’s more likely than not — at minimum — that the individual’s beliefs are true. General beliefs (even knowledge) regarding the capabilities of government, or even knowledge of specific examples of such occurrences, do not even remotely justify this behavior. The inattention paid to the specific circumstances of real people — the vast vast majority of people harboring these beliefs — while enlisting their stories in support of a general idea or to corroborate an individual experiences, is truly irresponsible. This critique comes from a place of concern, and is grounded in personal experience.

  • I think it is highly irresponsible and dangerous to promote the idea that people who are in the throes of the kinds of experiences referred to in psychiatry as delusions and hallucinations are not experiencing paranoia or perceiving the world in an objectively inaccurate, way but have been subjected to mind control. To me the possibility that violence perpetrated by Lanza, Alexis and others is influenced by the side-effects of psychiatric drugs is a real one. But the idea that people who believe the government is controlling their minds are not experiencing paranoia or other sensory distortion is not credible, at least in the vast, vast majority of cases. Beliefs about the CIA or other clandestine government and other operatives engaging in mind control experiments is very common among people experiencing (lets call it) psychosis. I am someone who had those beliefs, and they were assuredly, and without any question, false. Even were it so that such technology exists — and I cannot discount that possibility lacking similarly uncontrovertable evidence to the contrary — it cannot possibly influence nearly all cases. To suggest to someone experiencing paranoia of this variation that their beliefs are true is simply harmful to that person and contrary to the harm reduction ethos of this cause, because the person will be less likely to seek the help they otherwise might want (whether via Open Dialogue or any other treatment approach). Activists seeking the elimination or even the reduction of psychiatric drugs diminish their effectiveness and credibility when making these claims.

  • And Seth, in case you do want to reply, I want to be clear that my question is not whether the perceived relief experienced after taking antipsychotics, anti-depressants or mood stabilizers evidences the existence of brain or psychological dysfunction. I also accept that we will likely disagree on whether the experiences referred to in psychiatry as depression and mania are forms of brain psychological dysfunction. The narrow question is that, do you understand that mood stabilizers and antidepressants do not as chemical agents provide *any* beneficial effect, or relief, other than a placebo effect misinterpreted as relief from symptoms caused by the drug. I think I understand your conclusion to be that that the only effects that anti-depressants have on the brain are the harmful side-effects, withdrawal-effects, and the induction of mania, and any depression-lifting benefit is purely a placebo? Is that correct and what about so called mood stabilizers? Is your position absolute that there can be no beneficial effect whatsoever other than placebo for any DSM/FDA approved psychiatric drug?

  • Seth,

    In my view we don’t have adequate responses to the requests for help of many who seek relief from experiences they view as destructive in their lives — experiences that psychiatry refers to as hallucinations, delusions and psychosis. Where you and I may agree is that it appears to me increasingly plausible (you require no more convincing) that the relief neuroleptics cause in the short and long term are unscientific in nature. Likewise, because of their quite possibly unscientfic mechanism of action, the effects of neuroleptics (and getting off of them) do not in themselves evidence that the person suffers from any brain dysfunction. This especially if people, for instance, suffer from psychosis when they get off of them yet never were psychotic to begin with (they used it as a sleep aid or to treat non-psychotic depression for example), or if people are psychotic in the first place due to use of hallucinogens such as cannibis and PCP. Additionally, I suspect that, with full information on what we know and don’t know, many would choose not to take neuroleptics at all, ever, on the view that the relief is outweighed by the addictive, metabolic, cognitive, emotional and other problems associated with those drugs. Those people might instead seek relief for their psychosis in other ways, or might try to wait it out (even given the costs and risks of doing so). We also agree I suspect that, at least for some people addicted to neuroleptics, it is unwise to abruptly discontinue taking the drugs due to the withdrawal effects, perhaps caused by supersensitivity psychosis, and it may be the case that these addicts cannot safely get off of the drugs at all (at least not entirely). If this is so, we might also agree, at least in some respects, that there’s a role for the best of the world’s psychiatrists to help people wean off of antipsychotics. You would disagree with my view, however, that it is ethical and wouldn’t amount to medical malpractice were a psychiatrist to prescribe a neuroleptic to a person not already on them. But to me, if that patient is fully informed of all known risks, alternative approaches to treatment, and some basic facts about the limits of medical knowledge in this area (and our hopes to find better treatments, medical and other), and if there is a solemn commitment to try to wean the person off once they’ve been stabilized, the psychiatrist can properly prescribe a neuroleptic to provide the short and long term relief desired.

    Where we might disagree more, and this is only a little off-topic, is in relation to other psychiatric drugs. Are you an absolutist on the issue of whether *any* drug currently on the market that are FDA approved for use to treat a DSM-diagnoses and regarding which there has long been a consensus among mainstream medical professionals regarding the safety and efficacy of those drugs for those uses? (No need to preach to the choir about the corruption and limited authoritativeness of the FDA) Let’s take two examples: Lithium and (self-servingly), Lamictal, for their purported use as “mood stabilizers.” Do you think psychiatry’s claims of their benefits and tolerable side-effects is a sham, and a sham to such an extent as to warrant an absolute bar on the use of these drugs on people, whatever their conditions and history? Are there *any* drugs that pass muster, e.g. anti-depressants? This is not a rhetorical question; I value your opinion.

  • Seth,

    Thank you for your informative post and links. My concerns about autonomy and choice are not epistemological either, but evidence-based. I have read Breggin and Whitaker and others — with great interest and eyes wide open. Their work is what brought me to this site and gave me the courage and sense of urgency to wean off of Seroquel. Nor have I discounted the significance of the placebo effect in psychiatric care, and I acknowledged in my previous post that the judgments of some are not fully informed or carried out with sufficient capacity. But I have observed first hand my own patently false and sensorily impaired (i.e. objectively inaccurate and subjectively tactless) beliefs and actions on them, well before I ever trusted or even saw a psychiatrist. These beliefs and actions are evidence to me that my brain was not functioning properly. This to me is uncontroversial and without question, and the conclusion is mine to not question. Others are free to and will disagree with me. As for treatment, this is much more thorny. As a person who has experienced what I observed in my own mind as dysfunction, I face a dilemma. I want to believe that the psychiatric medications I’m on are ineffective, or at the very least any benefits are far outweighed by detrimental effects, which would enable me to to believe that I can avoid that dysfunction, as well as dysfunction referred to in psychiatry as depression, without resort to harmful medications. But the risk of being wrong is simply too consequential for me to embrace, without scientific or medical training, scientific and medical conclusions beyond the scope of my knowledge and skill. Nor would I trust my own independent research, lacking the training to be able to arrive at reliable and fully informed conclusions. I’m left with having to face choices on whom to believe. This to me is not easy, and cannot, be based upon empirical assessment with sufficient reliability to warrant taking such high stake risks. Your distinction between addicts and non-addicts, the former of whom you’ve not said should under no circumstances be on neuroleptics (as I understood you), is an important one. As an addict seeking to free myself of Seroquel, and I accept “addict” as a fair characterization of my condition — , I live in a way as an inverse junkie. I want desperately to wean off of Seroquel because of the benefits of reducing, and trying to eliminate, side effects. But, for me, perhaps unlike the conditions of many others, my life is in a very good place, and so the lure of drug-freedom, in some ways like the lure of recreational drug use, is fraught with peril. And so I must take my own Hippocratic Oath and vow not to do myself harm by changing my brain in a way that could undo the gains I have made since last being unstable (i.e. when I tried to switch to another neuroleptic in 2010, and prior to that, before being on any neuroleptic). Whether my stability was in part due to a placebo effect — I don’t discount this possibility though it would only be a partial explanation — I am nevertheless stable. This is an unequivocal fact, because I do get to decide what stability and happiness mean to me, and I am extremely well educated, self-knowing and skeptically minded. Given this calculus, I am of the view that Sandy’s efforts — and those of others displaying similar courage and integrity as medical practitioners and researchers — to help people like me — people who are fully informed and want help — critically important. And I am not the only one in this position. I believe I can take this position and still agree with much of what is said by folks with different views than mind. I don’t see it as a binary choice, but a more nuanced one. We can be allies with each other and with psychiatrists like Sandy without a you’re with us or against us directive.

    So, in sum, as an addict, and survivor and past sufferer (subjectively) of brain dysfunction, I feel little choice — given my responsibilities to my family — but to and rely upon the best of psychiatry as a conservative with a “little c.” Knowing that any scientific knowledge (admittedly, even by many psychiatrists, little) is in its infancy, and knowing that had I not started on the drugs in the first place (which might not have occurred without prior use of cannibis), I might not need to engage in the caution I do now. But I must engage in it, and it would be irresponsible for me to assume that the effect of Seroquel on my stability (short or long term) is necessarily and entirely a fabrication of my mind or that of my psychiatrist.

  • I agree that you make important points here, mjk. As I have read you make in other posts. And I think the concern we have been discussing regarding the potenially detrimental cognitive effects of neuroleptics is underscored by the study just posted on this site today, evidencing that tapering off of certain neuroleptics increases cognitive functioning. See http://schizophreniabulletin.oxfordjournals.org/content/39/5/993.abstract . But my concerns are not limited to cognitive functioning, but extend into emotional and social functioning, which, of course, are both interdependent with each other and with cognitive functioning. The emotional blunting effects, which I can also describe with painfully acute specificity, as well as the decline in social functioning I have experienced (and can recount with similarly horrific detail) are as profound and debilitating as any cognitive effect. Why are these side-effects not acknowledged in the mainstream? The only meaningful discussion of side-effects I can discern in the mainstream are the — likewise very serious — detrimental metabolic effects, such as those described below by aria. Should I conclude that the only reason why those effects are acknowledged is because Big Pharma has been forced to acknowledge them following billions in legal settlements concerning those side effects? Does mainstream science truly believe that cognitive, emotional and social side effects are of limited or no significance? Do scientists and psychiatrists believe that those effects may be adequately explained by evidence that those on neuroleptics satisfy the cognitively/emotionally/socially deficient profile and therefore existing and further research is unimportant, or unimportant when considering the risks of relapse? Setting aside the question of whether people diagnosed within the schizophrenia spectrum can truly be said to be sufferers of “negative symptoms of schizophrenia,” isn’t it clear — as Sandy and others on this thread and elsewhere do and must acknowledge — that neuroleptics are being prescribed to legions of people without that diagnosis (which I acknowledge accept raises many questions — I mean no disrepect to those so labeled)? Does the conventional wisdom also dictate that non-metabolic side-effects of neuroleptics may be explained away by nature or minimalized as unimportant in the face of whatever intended effect — on- or off-label — the drug is supposed to have on a subject?

  • Respectfully, it is for you, mjk. I can only speak for myself. And as myself I recognize that, notwithstanding the experiences and grievances we may all have in common, we cannot speak for each other. There are some whose voices are not heard that some of us may feel, with strong basis I believe, we should take it upon ourselves to amplify. There are surely others who lack the ability or information to make sound judgments on their own behalf, who may need the assistance of others. But there are also others whose decisions regarding their use of psychiatric drugs (including decisions to take them, in whatever circumstances) are fully informed: informed by science, by opinion (both mainstream and other opinion), by peers, and, most of all, by their own subjective personal experience. I don’t purport to speak for them, or, for that matter, for anyone else who chooses not to adopt my opinions. Nor could I, because I agree with many of you here that each person is entitled to his or her own decisions about what they do with their bodies, in the end. I would focus my energies as an advocate, if I were one, on making sure that all of those at risk are fully informed in all relevant respects.

  • I wanted to comment that, tapering off of Seroquel has illuminated for me, at least in a subjective way, what that “something” Sandy refers to looks like from the perspective of someone experiencing a psychosis (let’s please just call it that for purposes of this post), and then what it looks like for someone who, years later but still on Seroquel but no longer experiencing a psychosis. There has been much said about neuroleptics being little more than tranquilizers that induce people to no longer care about the concerns they have while in the throes of a psychosis. Subjectively, that seems right as a mechanism of action from my experience. While hospitalized, my experience was I suspect no different than many of the other folks on this site. Which is that, the more I communicated my distress and defended my reasons for it, the higher the psychiatrist increased the dosage. Eventually, yes, I was so sedated that I forgot what I was so concerned about and then, by the time sufficient wits had returned to me, I became newly more concerned with immediately practical things such as, most significantly, earning my clothes back and then getting out of the hospital so that I might mitigate damage to my personal relationships and employment situation. Notably, as I suspect is also the experience of many here (perhaps not the people you’ve worked with, Sandy), so long as the offending beliefs were no longer being emphasized by me, no effort was made by the psychiatrist to revisit what exactly the beliefs were about and where they came from. Instead, the (highly questionable in my view, if true) standard of care appears to be to avoid any discussion or further thought of the beliefs, so as to avoid a return to them and the purportedly accompanying high risk of succumbing to them as a result. Fast forward to 8 years later, and, while tapering off I notice something which, subjectively to me was chilling. I’d forgotten a dose and then took one mid-day, to keep up because I am being extremely deliberate and vigilant with the taper, which I very strongly recommend to anyone out there interested, because so far it has been successful even for someone with 4 prior episodes. But I took this mid-day dose only after having been used to the greater clarity I had acquired from having begun the taper. So as a result, what appeared to happen — without my having at all anticipated it — was that, while I was engaging in conversation I encountered greater difficulty than had been the case following the recent cognitive gains, in keeping track of my thoughts. It was as if a thought would flee from me just as I was articulating it. I wonder if this effect has been examined more closely, beyond fuzzy descriptions of tranqulization and reductions of symptoms. This concerns both the un-psychiatrically-diagnosed as well as, also seemingly relevant to Sandy’s post, the diagnosed who are no longer suffering from acute psychosis. As I described elsewhere on this site, Seroquel certainly seems to makes you no longer care about your immediate concerns, and may make you in fact forget any train of thought you happen to be communicating at a given moment. Especially if what you’re trying to communicate is something you care about — the more passionately you feel about something, the more important the point you’re trying to make, the very thing that you’re trying to convey: those thoughts and feelings are snuffed out and silenced by the effects of the drug. The drug stands between the self and the outside world. The intended and actual effect of neuroleptics reminds me of something Nietzche wrote:

    “Consider the cattle, grazing as they pass you by. They do not know what is meant by yesterday or today, they leap about, eat, rest, digest, leap about again, and so from morn till night and from day to day, fettered to the moment and its pleasure or displeasure, and thus neither melancholy nor bored. […] A human being may well ask an animal: ‘Why do you not speak to me of your happiness but only stand and gaze at me?’ The animal would like to answer, and say, ‘The reason is I always forget what I was going to say’ – but then he forgot this answer too, and stayed silent.”

    “Untimely Meditations,” by Friedrich Nietzsche

  • Lynn, so sorry to hear this. Insomnia is a living (and waking) nightmare. After years of complaining to my psychiatrist a couple of years ago about the cognitive and emotional side effects (apart from the metabolic ones) of Seroquel (I’d been on 6+ years) he finally agreed to make one change: switch me to Geodon (weaning down from 300mg would, in his view of course, be suicidal). Geodon, he advised, would be less “sedating,” and even had some “stimulative effects” in some people. The tailspin that Geodon set me off on emotionally almost destroyed my livelihood and my family — insomnia, depression, panic attacks, anxiety. I remember not being able to be still and having to walk briskly around the block in order not to feel as though I would explode. The anxiety triggered every neurosis that had ever crawled into the recesses of my brain (of which there were very many). I alienated and fled from friends, co-workers, my wife, family members. I was told that benzodiazepines would take off the edge and that, although it (Atavan) is a controlled substance that mainstream practitioners caution against taking long term, I was advised that some people do well on them indefinitely. Of course, I became an addict, and the panic attacks accelerated and deepened. I could barely function at work. The direction I was headed on Geodon was catastrophe, and so I went back on Seroquel (depression followed [call it what you will]) and, two years later, I decided that I could not longer tolerate the effects. I fired my psychiatrist and found a new one willing to wean me off. I am 1/3 down and imminently will be 1/2 down. So far, as I’ve reported on this site several times, the result has been remarkably positive. So far, I have only experienced a reduction in side effects. But I went down 50 mg only every couple of months. The feeling of being a “reverse junkie” is terribly difficult — the more I wean off and come alive again, the more I want more of it out of me, desperately. But I’ve been on Seroquel for some 9 years (with the exception of about about 3 months on Geodon), and so far weaning has been all positive. I am mindful, however, based on what many of you have reported and what I’ve read and heard elsewhere, that once I start getting close to the bottom — slowly or not — things may get worse. I wonder what steps I should take to place myself in an optimal position to make the transition and maximize healing. Lynn, if for whatever reason you and the people you are relying on decide that you need to go back on a neuroleptic, please know that a (very) slow taper might result in an entirely different experience for you. Best of luck and be well.

  • These are truly remarkable admissions from someone in his position. A cause for a celebration of sorts, to be sure, but for those of us still on these drugs it’s further cause for distress, fear and urgency. I’m aware of all of the research regarding brain shrinkage and other injury to the brain caused by neuroleptics. As I myself taper off of the one I’ve been on for over 8 years (next week I’ll be 1/2 down), what can I do to maximize my brain’s ability to heal and make best use of its natural neuroplasticity? What do we know about the degree to which injury to the brain may be reversed and what cannot be?

  • These findings suggest in a very specific way that neuroleptics can worsen long term outcomes insofar as it is true that neuroleptics cause “neuroleptic-induced deficit syndrome. This syndrome causes those on those drugs to develop what are referred to as the negative symptoms of schizophrenia. For those uninitiated, see http://en.wikipedia.org/wiki/Neuroleptic-Induced_Deficit_Syndrome and http://www.ncbi.nlm.nih.gov/pubmed/8866773 .

    I know that this syndrome is real, as I’ve experienced it firsthand, and the truth of it is confirmed each time I reduce my dosage of the neuroleptic I’m on as I slowly taper off of it. Yet, the only side effects that are viewed in the mainstream are the (very serious) metabolic ones. And it would be difficult for pharma to deny those effects, since they have paid well over a billion in civil and criminal penalties (for them, barely a drop in the bucket) for concealing and lying about those metabolic side effects. See http://www.nytimes.com/2010/10/03/business/03psych.html?pagewanted=all&_r=0

  • I just today experienced a very disturbing reminder of how debilitating neuroleptic drugs are to people who take them needlessly. I’ve been tapering off of mine, but forgot to take my current dose last night. So, like a good patient, I took some mid-day, but just a half-dose. Since then, my interactions with people all day have been disturbingly appalling. Having come down some with remarkable positive effect, I am now able more acutely to discern the negative effects of the drug. The drug is supposed to make you “no longer care” about your purported delusions. Well, it certainly makes you no longer care, and makes you in fact forget, any train of thought you happen to be communicating at a given moment. Especially if what you’re trying to communicate is something you care about — the more passionately you feel about something, the more important the point you’re trying to make, the very thing that you’re trying to convey: those thoughts and feelings are snuffed out and silenced by the tranquilizing effect of the drug. The drug stands between the self and the outside world. The intended and actual effect of neuroleptics reminds me of something Nietzche wrote:

    “Consider the cattle, grazing as they pass you by. They do not know what is meant by yesterday or today, they leap about, eat, rest, digest, leap about again, and so from morn till night and from day to day, fettered to the moment and its pleasure or displeasure, and thus neither melancholy nor bored. […] A human being may well ask an animal: ‘Why do you not speak to me of your happiness but only stand and gaze at me?’ The animal would like to answer, and say, ‘The reason is I always forget what I was going to say’ – but then he forgot this answer too, and stayed silent.”

    Untimely Meditations by Friedrich Nietzsche

  • Thanks anonymous. I always value your input and perspective, even if we sometimes part ways on some issues. Though in fewer ways, I suspect, than may seem on the surface.

    What I am labeling as success is an ability not only to carry out what I subjectively believe is a rewarding professional career, but also to be able support a wife and two kids as a primary earner, as well as moonlight as a musician extracurricularly. The principal ways that I believe I have not been successful over the past few years concern my cognitive, emotional and social function. I was, yes, effectively coerced by my psychiatrist, the antipsychotics I take, and the industry fueling their proliferation into believing that my baseline as measured by those three metrics were far inferior to what I had been accustomed to over the course of my life prior. To disbelieve that I had reached that this was an appropriate baseline at a time when I was made to live in fear that to get off of the antipsychotics would bring all that I had built to ruin, would have placed me on a plane of hell that would have been unbearable. Now, what made it easier for me to accept this was that I have been on lower doses of the drugs than many of my peers here, and as a result less debilitated in a way that still enabled me to be successful professional and socially. But nevertheless I have been slower, number and more socially avoidant than I had been in my earlier adulthood. And these effects have deteriorated over time, in ways that, while not bringing my life to ruin, has harmed my relationships with my spouse, my colleagues, my professional and musical peers, my family, and, worst of all, myself.

    All of that notwithstanding, as I’ve railed elsewhere on this site (quite unpopularly I suspect), I am also a victim of the coercion imposed by the culture, norms and wielders of power over my life around me that the life commitments I have made bind me to. So I cannot afford to believe in strange things (most of all, in my own inadequacy, as depression (or the feelings that are called that) compels me to do) notwithstanding that there is no proof of an underlying biological defect. If a mood stabilizer prevents me from feeling those feelings and from believing even stranger things on the other end of the spectrum, then it may be something that I need in the long term. In my experience, psychotherapy has not been sufficient. Nor, I suspect, would winning the lottery.

  • Jeff,

    You and I have a similar profile in many respects — successful professional placed on anti-depressant followed by increasingly erratic mood cycles, bipolar diagnosis and mood stabilizers, in turn followed, for me, by successive psychoses and hospitalizations accompanied by antipsychotic prescriptions and a schizo-affective diagnosis. Also, a history of similar mood swings in the family. I later became stable, and resumed my professional successes, but all while on a mood stabilizer and antipsychotic. That was where I was for over eight years (all the while becoming more successful) until a few months ago I finally defied and fired my psychiatrist, replacing him with someone who would help me get off of the antipsychotics. I’m 1/3 down and soon to be 1/2 down, and I’ve already as a result reaped some soberingly remarkable positive cognitive, emotional and social benefits. I also was re-diagnosed with a bipolar diagnosis and no longer labeled schizoaffective. My current psychiatrist is confident I’ll be able to ditch the antipsychotic entirely, but strongly cautions against getting off of the mood stabilizer (Lamictal). What I’m struggling with now is whether to heed his warning or to try to get off of that as well. I do feel that since it’s an anticonvulsant approved and used by epileptics for nearly two decades, I’m less concerned about side-effects and brain injury, certainly less worried than I am about antipsychotics. Maybe I shouldn’t be less worried. I’ve not decided what to do and can’t seem to get advice anywhere in between the views that: (1) under no circumstances should anyone with a bipolar diagnosis not be on a mood stabilizer; and (2) under no circumstances should anyone, whether diagnosed as bipolar or not, use a mood stabilizer purportedly to treat a psychological state. In any case, it was validating to hear your story, which resonates so strongly with me. Thanks for having the courage to share it openly.

  • http://www.ncbi.nlm.nih.gov/pubmed/23643756

    Has the above study and studies like it been discussed on this site yet? What about in the medical schools? This corroborates other studies finding a “neuroleptic induced defecit disorder,” as well as my subjective experience on, and coming off of the drugs. I am still only 1/3 down (though still with remarkable positive changes) but shortly will reduce to 1/2. So far the only side-effects of neuroleptics that have been reported in the mainstream as significant are the metabolic ones, and “sedation.” And sedation is characterized as little more than sleepiness, when, as we know, this effect is far more pernicious. Where is the reporting in mainstream media of studies like this? We know what the problem is, but how do we get the attention of the public and medical academia?

    “For 30 out of 49 items a clear response pattern emerged, which was similar for patients with psychotic disorders and patients with other diagnoses. Factor analysis of these items revealed three main effects of antipsychotic medication related to doubt and self-doubt, cognitive and emotional numbing, and social withdrawal. Antipsychotic treatment appears to be connected to a number of negative subjective effects on cognition and emotion. Further studies are warranted to assess how these effects impact on the patients’ subjective well-being and quality of life, as well as their association with antipsychotic efficacy on one hand, and adherence rates on the other. Induction of doubt and dampening of emotion may be one reason why antipsychotics work and at the same time offer an explanation why they are experienced as rather unpleasant and are eventually discontinued by many patients.”

  • Anonymous,

    What’s enraging to me about this piece is not the author’s self-assessment. It’s that the author describes yet another very direct, unambiguous manifestation of coercive power over the lives of those of us who are perceived as psychiatric patients, whatever form our self-assessments may take. Apart from those in psychiatry who harm us, there too are guardians of great halls of power who are authorized by the state to disqualify any of us who have been labeled with a psychiatric diagnosis from eligibility for a professional credential that might actually be deployed to empower ourselves and others in our secret society. Any of us here, or others who might find themselves here one day, are denied by these credential-ers the right to even try to fight a fight to expunge what is rotten in psychiatry through the courts. We are excluded as defective before we can even open our mouths in a place where we might at least attempt — against terrible odds, to be sure — but in one of the few places where we are in a position to even *try* to place some legal limitations on the power of the state and other bad actors to stigmatize and cause harm to us. The only alternative would be for these would-be lawyers to lie to the lawyer police, thereby both risking a harsher and more consequential exclusion should one become “outed,” and, worse, requiring them to conceal the very thing — living the life and telling the story of a survivor — that best equips them to fight that fight with the training they might receive. Indeed, they must refrain from even choosing that fight, else they be outed and cast out from those halls for having made that forbidden choice. I wouldn’t be surprised at all if the medical boards erect similar boundaries excluding the very people whose training might be put to the best use towards efforts to change psychiatry and develop different, unharmful ways to help people. As for the price of admission to politics, one must only recall the short-lived 1972 vice-presidential candidacy of Thomas Eagleton, who was disqualified for the black mark on his record of having been treated in a hospital for depression. And this is one of the few areas of bigotry regarding which little if anything has changed since 1972; it may have even gotten worse in some ways. When Bill Maher (self-styled speaker of truth to power) pronounces, after the laudable gains of gays and gay rights activists, that pot-smokers are the last ostracized group in American culture, I want to, as I’ve heard you say once or twice before, vomit in the nearest toilet.

  • And I want (because I know my comments are controversial here) to add that treatment limited to, for instance, open dialogue and psychotherapy are options that might not be practical for someone impeded these same financial and life constraints I describe, at least in the short term. A person experiencing a psychological state while employed and supporting self and, perhaps, family, does not have the luxury of traveling to an open dialogue center or engage in talk therapy over a lengthy period if s/he wants to avoid disability discrimination from their (for most people, less than ideal, but nevertheless unavoidable, especially in a bad economy) employer. And as many of us know all too well, employers can engage in such discrimination with abandon, since those of us still in need of employment won’t commit career suicide by filing an action in open court which discloses a mental health diagnosis (which, to whatever extent improper, carries great meaning an force within consensual reality). It’s also unclear whether longer term remedies are the best option for a person and their co-parents confronted with the challenge of addressing the needs of children in the middle of a (consensual reality) crisis. So, lets make sure we are thinking about the other real , overarching problems of coercion facing the vast majority of us without power, apart from coercion imposed more narrowly by psychiatry.

  • I want to add that my conclusions about the safety and efficacy of short and long term use of neuroleptics are informed not only by my personal experience as a survivor/patient, but also based upon that scientific evidence that I am satisfied is uncorrupted by greed, insufficiently rigorous, politically motivated or otherwise unreliable. But I recognize that, on the science, I am a layperson because I am not adequately trained to engage in rigorous scientific inquiry. So I must rely in large part upon the conclusions drawn by others, as my own first hand experience, while invaluable and unavailable to most scientists and medical practitioners, does not provide me with all of the answers. I am equally unable, without training, to reliably assess the data whether by Pfizer or by Peter Breggin. Whom we trust should not depend only on what our values and subjective experiences are, but should also take into account experts in scientific inquiry whose reasonable and uncorrupted opinions might conflict with those of others we want to trust.

  • The issue of coercion is a very serious one; no issue is more serious in my view. If there exists insufficient scientific support for the safety and/or efficacy of a drug for a particular use — e.g. indefinite prescription of antipsychotics for “maintenance” therapy, or, worse, scientific proof that the use is unsafe and ineffective, then, yes, it is outrageous for that drug to be forced upon patients for that use. And, yes, there are also very real forms of coercion that fall short of physical force. As for the safety and efficacy of short term use of antipsychotics, I’m ambivalent given my sense that the positive conclusions I’ve drawn about my own personal experience must be weighed against some of the admittedly compelling evidence that has been presented on this site and elsewhere that is to the contrary. I’m weighing the evidence.

    But I think what’s missing in this discussion is appreciation of what I believe is the fact that there are also legitimate reasons for a person to receive informed advice by a healthcare provider in favor of short term antipsychotic treatment or even long term antipsychotic treatment. This even if it’s true (and it’s debatable) that all the drug is doing is tranquilizing the patient, and this even if the patient doesn’t believe that the psychological experiences they’re having (short term) and the risk of them recurring (long term) are problematic.

    The easy case is where a person — and this is not uncommon — paranoically believes that they are being persecuted by the government or other clandestine forces and operates in the world in accordance with those beliefs. After 9-11, at least, that person is at risk of being forcibly detained or worse by authorities seeking out criminal and/or terrorist activity. There is clear risk of harm to the person that cannot be questioned, in my view.

    A tougher case is when a person acting out their unconventional beliefs about their psychological experiences is truly not physically or otherwise harming themselves or others in a concrete way. Here a different form of coercion is at work that arguably favors treatment with antipsychotics, in the short and perhaps even the long term. Here, yes, there does in fact exist a “consensual reality” that, even if not willingly embraced (and I do not believe that the vast majority of us who do embrace it should be judged), is itself coerced. That very real coercion, if an individual views it as such, may not be undone, regardless of whether a person ingests a drug or not. What this means is that somebody who doesn’t have a problem with hearing voices about innocuous things might not have the insight to know that these things might prevent them from being able to get a job and afford to support a family in the “consensual reality” to which we are all subject. Or, at least, the vast majority of us who depend upon people in this reality with power over our lives to provide us with the resources needed to live. James Brown didn’t need to worry about the conflict between his beliefs and “consensual reality” because being unconventional was part, indeed the very hallmark, of his job prescription. Wealthy or financially secure (retired or not) people also don’t need to worry about it because they don’t need others in the mainstream to opt in in order to be able to support themselves and their families. If that person hearing voices finds those voices so compelling that they don’t care that people with power over their lives will serve as an obstacle towards their being able to earn a living (arguably there are other needs that are more diffciultly met — successful social interaction with family and others, for instance — but lets stay with an uncontroversial one), then it is reasonable for that person to be advised by a healthcare professional that it may be important for something to be done to return them to the mainstream “consensus”. Likewise, in order to function in the mainstream — something that is necessary for most of us in able to subsist even if one doesn’t otherwise care about obtaining financial security for self and family — one must be free of the stress that our flawed society imposes upon us. The incompatibility of these psychological experiences with consensual reality — a reality that exists even to the extent it can be questioned — creates stress that makes it even more difficult than it already is to achieve subsistence or more. These are among the many things that any healthcare provider, including a psychiatrist, must weigh in advising a patient of their treatment options. One option is an unfortunate one given the scientifically evident problems with the drug (and any other objections), but it can help stop the psychological experiences, at least (and, indeed, perhaps only) in the short term.

    Now if folks here believe that people hearing voices and perceiving things unconventionally (referred to in psychiatry, rightly or wrongly, as delusions) do have the insight to effectively weigh the benefits and risks of acting out the experiences given their life circumstances, and that the advice of a psychiatrist or other professional is extraneous or paternalistic, then that is another empirical question on which there may be further disagreement here.

  • Sandy offered (as I understood it) that the reflections of all of us who have experienced the mind states that psychiatric drugs and the psychiatrists who prescribe them are intended to address, and the reflections of all of us who have actually taken these drugs, ought to be respected. This should not be controversial. We all have a lot at stake and a lot invested in decisions we’ve made, will make and have allowed others to make for us, and in opinions we’ve formed, will form and will allow others to form for us. What should unite people with first hand experience on this site in my view — whether we call ourselve patients and/or survivors and/or anything else. is not a common prescription to cure (or euthanize) psychiatry. but a common objective to reduce harm and increase healing for ourselves and for others who might learn from our wisdom and experience. The venom I have observed here that is brutally applied by some to anyone who even so much as a hints toward endorsement of the view that a drug has helped someome — even themselves! — is just disproportionate and wrong. I and others here who may believe that drugs have helped them and might in the future help them in some measure know too what it has meant to look back at the rubble that had been our lives and our minds in agony and anger, to want answers and heads to roll. But we all have a right to our own questions, to speak for ourselves, to not be judged or disparaged or infantilized, and to take and leave what we will from the answers that are offered. No one has a monopoly on knowledge or on pain or relevance or integrity in this tragic and complicated business. I believe that , for me, the grave risk of not taking certain drugs must be weighed against their grave costs, for a variety of reasons that I’ve determined are sound to me. And so I value highly Sandy”s appropriately dispassionate assessment of those risks.

  • This is fascinating and disturbing to me. I’m someone who believes I (occasionally) suffer from something that I don’t have a problem calling, at least, a deviation from a state of functioning that I desire to correct, when the state is operative. The “depressions” and “manic episodes” and “psychoses” — and I agree that there should be, but what *would be* better names; they are a thing that need to be referred to using language) I have experienced were at once real, and broken from reality (as I had experienced reality throughout my lifetime). But that’s, of course, a wholly separate question than, does science know how to treat the condition. I am increasingly, highly, skeptical of that, and in particular about the long term use of anti-psychotics. To the extent I agree the ideas of folks on this site regarding the importance of gaining a “consciousness” it is more along the lines of , full recovery requires one ultimately to believe that science is in its infancy, purports to know far more than is known in the area of psychiatry, and is corrupted by pernicious influences that exacerbate psychiatry’s lack of usefulness and proclivity to cause harm. Psychiatrists in some respects, it seems, are not real doctors. I’ve already been taken aback over the years by my observation that I feel like I can do as good (i.e. bad) a job as the psychiatrists I’ve been treated by in making prescription decisions. It’s like rolling the dice and trying again if you don’t get the numbers you want. There is some level of expertise in terms of what kinds of drugs (weighted dice) are supposed to treat what kinds of mood states. I also accept that, *for me* some of these drugs will occasionally have some short term benefits, as measured by reverting the “broken from reality” to the reality I’d previously known. But I feel like I know how to weigh the dice pretty cold, as a layperson. This is a kind of consciousness that doesn’t require disbelief that something biologically wrong is going on. Don’t get me wrong — names and stigma are extremely, extremely problematic. A 60 minutes piece not long ago featured Iraq/Afgan war veterans who had suffered brain trauma in combat. I was disgusted by the fact that it seemed as much or even more important for the soldiers suffering the brain injury to be able to see a cat-scan that showed that the brain was damaged by an external force, and was not organically compromised. The soldiers rejoiced in relief at being able to confidently say that the mood states they were in, depression, anxiety, etc., were not mental illnesses and, therefore “not their fault” and “not an exhibition of weakness.” This study shows that their concerns were rational, as they would be treated differently by others were they diagnosed with an illness or disorder. If am fully cognizant of, and have experienced first hand, the stigma that is associated with being labeled “mentally ill,” depressive, bipolar, and schizo-affective.” Is anyone here comfortable at all with describing these mood states as a deviation, objectively, from a reality that a person requires to occupy in order to function effectively in the (*this*) world? Absent infinite wealth and and zero stress?

  • Matt,

    Thank you for this. I previously had found a excellent psychiatrist, who is also a psychoanalyst, and who has helped me to taper off of a neuroleptic that I’ve been on for some 9 years. As I’ve reported elsewhere on this site, even after only 1/3 down, the cognitive, emotional and social benefits — restored benefits — have been truly remarkable. This is, of course, at once wonderful and disturbing. I write here seeking counsel in regard to one of the challenges recovery has brought to me, more because I’ve found that comments to bloggers’ pieces elicit more responses than questions and comments within the forums section of the page, than because my comments relate specifically to your post. I also know you’re the web developer, so maybe you can think about whether this is a broader problem shared by other users of this wonderful site. The challenge I want to seek counsel about is, how does one who is in recovery navigate changes in their interactions with loved ones. My wife and I married after I was already on neuroleptics, and so she has always experienced me as the relatively more docile, distracted, slower, socially-avoidant, pessimistic, unmotivated, uninspired and low-energy person that I became (increasingly and cumulatively) on the drugs. Now, neither of us finds that version of me unlovable at all, and I’ve been very successful in all life aspects while on neuroleptics and believe they were once helpful to me, but both of us find that version to be markedly different than where I currently am. Neither of us realized the profound effects the drugs were having on me for many years, and we both accepted that the version of me on the drugs was my baseline. Now, while it is wonderful that my mind, heart, spirit and interactive fluency have returned to me, it is jarring for both of us. I am more assertive with her, I stand up for myself more, I embrace anger in a way I never did previously, I don’t avoid conflict as I did previously, I challenge her more intellectually, I pursue ambitions I neglected before. These are all positive things (and there are other affects that have not presented problems for us), but we have settled into a way of interacting that no longer is acceptable to me and it has had the effect of breaking down our communication. I also think my wife feels in some ways that I’m not the mane she fell in love with, and is struggling to find me and us in this new reality. Surely others have struggled with this challenge. We’re working with my psychiatrist but, in some ways, the most reliable experts are those of us who have successfully tapered off of personality-altering drugs and have faced the inevitable challenges on the other side.

  • The economics of the broader pharma industry carry grave consequences to patients and standards of care in many different contexts, apart from those involving psychiatric drugs (the promoters of which, to be sure, are among the chief offenders). Pharma companies invest billions into marketing and promotional efforts (including paying scores of millions to physicians and researchers to support their products) calculated to get doctors to prescribe drugs for uses not approved by the FDA, without sufficient (or, often, any) clinical support for those uses (which is illegal). This is particularly true when drugs only benefit small patient populations, such as treatments for rare cancers and other rare diseases, but the moral hazard extends even to drugs that have record on-label sales. The cholesterol drugs previously mentioned are a good example of this — just because lower cholesterol is better for people at risk for heart disease, it’s not necessarily better for anyone regardless of such risk, yet everywhere you look and from everyone you ask there is that message. When companies are caught engaging in these illegal promotional schemes, even if the companies have to pay criminal fines, no corporate executive is ever charged, and the fines paid by the companies, even if they seem large, are dwarfed by the profits they reap from the off-label sales. And since Medicare and Medicaid keep paying for the companies’ products, the fines are just the cost of doing business. This is an industry-wide problem, requiring an industry-wide solution. Psychiatrists are only one of many kinds of physicians who are paid by drug companies to sell their products for questionable uses, and — setting aside the validity of a given psychiatric diagnosis in general — many of the survivors who contribute to this site are victims of decisions by doctors to prescribe psychiatric drugs to treat emotional states for which the FDA has not approved drug therapy at all, or for which the FDA has not approved for the survivor’s particular psychiatric diagnosis (whether assigned rightly or wrongly). It’s not illegal for a doctor to prescribe a drug for an unapproved purpose, but the fake evidence in support of such uses (relied upon both by doctors and patients) appears everywhere, for psychiatric drugs to be sure, but for many other drugs as well.

  • Dr. Steingard, my question “what resources can I draw upon (other than primary sources, because I’m not a doctor or scientist) in order to determine whom to rely upon for [guidance regarding phrama drug use]” I pose to you. You are a medical professional, expertly trained in psychiatry and well versed in the relevant science. However valuable to me the insights of the sufferers and survivors who make this site such a valuable resource, with all due respect as I suspect some may take offense, I cannot rely upon this group, as such, for the rigorous medical and scientific knowledge that any understanding of the causes and non-causes said suffering and survival requires. Nor for the counsel and treatment provided by a physician to a patient. I speak only for myself, but I am not alone. I had an econ professor once during a time of great economic turmoil and disaffection among many towards economists who distorted flawed economic principles that had been canonized as “classical economic theory,” to aid and abet those who would exploit their work for monetary and political gain. The prof, despairing at the legions of self-styled liberal students who shunned careers as economists pleaded, know thine enemy, and defeat them with the very tools that have been used in the service of greed and corruption. Why leave these tools in the hands of those who’ve misused them, he asked. If psychiatry has lost its way — and I do not contest that it has, its the matter of degree that I might dispute with others here, but even if it has to that degree, indeed especially if it has to that degree — then, I don’t believe medical professionals and scientists should walk away from the study of application of neuroscience to address the emotional suffering of patients. Nor or the actual application, and even before everything is mapped out (which will take an eternity). What I think many in psychiatry may have walked away from — setting aside those (the many) who are corrupt and/or not free thinkers — most of all is the Hippocratic Oath. But when a surgeon amputates the a shrapnel victim on the battlefield the decision to cause that harm is based in part on the fact that technology fails us, as we do not have the tools to save the victim’s life without carrying out the amputation. But the life is saved, and orthopedic surgeons, scientists and engineers work to try to do better for future patients. All science is in its infancy, to a degree, all science is fallible, and we all realize how little we know the more we learn, probably in every context that matters. The suffering that some call symptoms and others call something else is real. No one disputes this, as I understand it. Ultimately the consequences that might result from good people rejecting and declining to pursue the study of psychiatry and neuroscience’s application to emotion in favor of the study of “real [better mapped out]” disease (and those who suffer from it) fall on those who suffer the most from these very serious manifestations of emotional distress, whatever their cause may be. This is true whether the cause of suffering is drug use (be it herion, xanax, or depakote) or something relatively more organic (be it human biology, modern living, or something else).

  • Heretic and others,

    Thanks for your responses, which I don’t find offensive. In a number of ways I find them thought-provoking and well-reasoned. Still, I believe am able to embrace, all at once, my conclusion that what I have experienced is something that is not desired by me (whatever the causes), my experience that medication, while not a panacea, has assisted me (among other measures) in my efforts to rebuild and succeed in my life, and the fact that, to whatever extent may be the case, science is insufficiently advanced to prove that these experiences are caused by some physiological deviation from healthy biological functioning, even insofar as distress derived from those experiences may be aided with professional or other intervention (using whichever tools may be appropriate, including but not limited to medication). If I had the freedom, given the commitments I have willingly (and in ways unalterably) made in my life to family and career, to choose to live in a stress-free environment, in which I could, for instance, practice meditation, participate in innovative, several month therapeutic retreats, and pursue leisure activities, my level of acceptable risk associated with taking pharma drugs would decrease. I choose to consume processed and non-organic foods (though am more selective with my children), despite awareness of its scientifically *proven* detrimental physiological effects, and despite specious claims by the food industry to the contrary, using a cost-benefit analysis. I must engage in a cost-benefit analysis and arrive at an acceptable level of risk in all of my life decisions, balancing all knowns and unknowns with the aid of reliable resources. I most certainly do include folks referred to here as “survivors” as reliable sources, because I have experienced and experience every day the reality that no medical professional, family member, friend or other person can know what it means to suffer from the ill- (or beneficial or benign) effects of powerful psychotropic drugs unless they have suffered themselves. Equally important are the experiences of individuals who have suffered from experiences similar to those I’ve described — whether referred to as symptoms, manifestations of societal defects or any thing else — and have made decisions of all variations on how to reckon with them in all varieties of life circumstances (most significanlty, my own).

  • Anon, I salute your passion. But I’m neither a scientist, nor a physician, nor an historian. I know only that I’m a person who found himself chronically suffering from mood fluctuations that had the collective effect of making me unable to function effectively in the world, including an inability to hold a job, notwithstanding a stellar education and support from his community. Most significant of these were wildly outlandish, and patently false, delusions and spiralingly suicidal depressions, neither of which were even remotely rational or in proportion to my actual circumstances at the time. These experiences ceased, and my ability to function in the world accelerated in all the important ways, when I agreed, not without a terrible sense of defeat, to take and did in fact, with discipline, take pharma drugs. I must rely upon people who are trained in psychiatry and/or are otherwise reliably knowledgeable of the evidence supporting and contesting the safety and efficacy of the drugs that I choose and choose not to take. My purpose using pharma drugs is to maintain the positive trajectory that my life has taken, and to prevent at all costs another reversal that I and my family cannot afford. What I need to understand better than I have understood to date, is, what resources can I draw upon (other than primary sources, because I’m not a doctor or scientist) in order to determine whom to rely upon for this information?

  • Before I’m misunderstood on the Hitchens Razor point, the point is not that there does not exist compelling evidence contrary to the claims made by paychiatry and pharma. You yourself have highlighted much of it here, particularly in regard to neuroleptics, as have others on that and other subjects. My point instead is that I think psychiatry and pharma often demand more evidence contrary to theirs than is warranted, because the validity of their own evidence is often overstated.

  • Thank you. I should clarify that I have every intention of trying to come off of the neuroleptic, entirely, and the open mind I have is to staying on some minimum necessary dose. My strong bias, after having read what I have read about potential long term effects and after witnessing the profoundly detrimental cognitive, emotional and social effects that they have had on me specifically, is to get off of them entirely. But I accept that I might not be able to, and, for me, the reasons for it would be less important than the fact of it. I’ll add as well that I have no intention of coming off of the mood stabilizer I’m on, an anti-convulsant, which I take with Omega-3, the safety and efficacy evidentiary record for which I find far less controversial. I have been aware from your writings and your research of your caution in regard to neuroleptic tapering, and I appreciate your supporting mine here. Something someone else said on this string also resonates with me, i.e. that the classification of so called mood disorders via DSM-V or otherwise is far less troubling than are efforts to promote the use of psychotropic medications to address them. I’m also mindful of what, in honor of the late Christopher Hitchens, is referred to as the “Hitchins Razor” principle: “What can be asserted without evidence can be dismissed without evidence.” Whitaker has elegantly chronicled occurrences thoughout history upon which psychiatry and pharma have made baseless claims regarding the safety and/or efficacy of psychotropic drugs. The trick here, though, is to sort through, with rigor and integrity, what claims by psychiatry pharma can be said to amount to evidence, even if imperfectly, and what cannot. I don’t believe that activists can get very far with a wholesale dismissal of the entire body of science, including diagnoses and scientific bases of all drug use for mood disorders. Finally, I’ll add, consistent with what many have promoted on this site, I’ve found that, for me, a multi-disciplinary therapeutic approach taken *by the same provider* has been far more beneficial than working with two or providers, i.e. a psychiatrist and a psychoanalyst. Even better than having providers work closely together is a provider who can consider and address each of the interdependent sources and causes of moods, at once. When I work with a provider I’d like them to have the tools and knowledge to understand the differences and relationships among perceived mood symptoms, efficacy or non-efficacy of medications, side-effects, neuroses, ordinary reactions to circumstances. The should also be willing to address the *content* of delusions and hallucinations for therapeutic purposes rather than to dismiss them outright as irrelevant because irrational. Also consistent with innovations supported here, the provider should also have access to and should actively involve family members in therapy.

  • Dr. Steingard, I’m someone who is more ambivalent about some of the ideas that have been expressed on this site than some. I believe that I suffer from a serious mental illness, and while I do not discount the possibility that improper use of anti-depressants and cannibis may have precipitated my first significant symptoms rather than it having been a fully organic process, I still can very confidently say that treatment with psychiatric drugs, including neuroleptics, helped to turn my life around. I have remained high-functioning and achieved many goals while on neuroleptics, for many years, after a series of episodes that resulted in my losing everything, at great cost. I rebuilt my life and accomplished more than I had previously, all while on neuroleptics. But after nearly a decade, I still found myself missing and longing for a self that had been lost, and which I had dismissed as a hypomanic fantasy. Nine years in, and I still could not shake the feeling that something fundamental was not right with me. So, tired of being told in no uncertain terms for years by the psychiatrist who had finally stabilized me that I needed to be on a therapeutic dose of neuroleptics for life, causing me to perpetually live in fear for the loss of my livelihood and my family, I had to try something different. I sought the aid of a very difficult to find psychiatrist with a track record of helping appropriate patients to successfully taper off of neuroleptic drugs, by at least some measure, or do the work necessary to confirm for the patient that it could not be done without unacceptable risk. The result has been transformative. I gained the courage to make this change in no small part by reading things you have written over the past year, as well as the writings of others on this site and elsewhere (e.g. Whitaker and Breggin). I am only 1/3 down from the dose I had been on for several years, and I recognize myself again, in a way that I’ve not for over a decade. I don’t know whether I’ll go down further; I have an open mind but I am committed to remaining vigilant. But even this small reduction in dose has had a soberingly profound effect on my cognitive and emotional functioning. There is little doubt in my mind that the neuroleptic I have been on has been causing me to experience negative symptoms of schizophrenia (I was misdiagnosed as within the schizophrenia spectrum, i.e. schizo-affective/bipolar type). I share the pain and outrage that so many on this site have expressed so eloquently, even if I disagree with conclusions that have been reached by some. My experience is a sample size of one, and cannot serve as a rationale for any other person’s medical decisions. But folks out there should know that you don’t have to disbelieve in neuroscience or dismiss the entirety of the mental health industry in order to recognize that psychiatry and the pharmaceutical industry have a lot more to answer for than most of their spokespeople will ever admit, or even acknowledge. This is for real. But those of us who have fallen victim can’t be the only ones to speak out — we neither have power, nor can afford to lose our anonymity. But thank you Dr. Steingard, for risking your livelihood and reputation and speaking out. It’s shameful that greed and inertia can operate to thwart important clinical work which is based upon scientific evidence and is directed at helping patients live better lives.

  • If you or Dr. Steingard have handy and can post something listing and/or summarizing the data on mortality in psychosis patients I would appreciate it. I’ve read Whitaker’s Anatomy of an Epidemic — is its discussion on mortality comprehensive?

  • I became aware of this page only around a month ago, and decided to remain a follower and then a participant in large part as the result of reading your authoritative, scrupulously careful yet open-minded and — given the conventional wisdom — often bold contributions to the space. It has truly been heartening to find that practitioners of your caliber and influence are looking carefully at these issues.

    Evidently (the widely read) David Brooks has taken notice of Whitaker and others’ concerns about the state of psychiatry. In addition to the Sydney award piece, as editor of this year’s edition of Houghton Mifflin’s best selling “The Best American Essays” series, Brooks included among 25 selections Marcia Angell’s review of Whitaker and others in her New York Review of Books essay “The Crazy State of Psychiatry.” See https://www.kirkusreviews.com/book-reviews/david-brooks/best-american-essays-2012/ and http://www.nybooks.com/articles/archives/2011/jun/23/epidemic-mental-illness-why/?page=1

    I am hopeful that others similarly in the mainstream will take notice, and force a wider national dialogue.

  • I see — there may have been any number of reasons why your patients with mood symptoms were more likely to taper. I would be curious of why, recognizing that it would be difficult to identify any patterns given the sample size. Reasons might include: (1) greater skepticism/lower insight on the part of such patients regarding the need for medication and accompanying lower level of discipline/cooperation; and (2) greater subjective experience of behavioral side effects. In regard to (1) there are no bright lines, but some bipolar and schizo-affective patients’ experiences with mood symptoms may be more prominent than any psychoses they may have experienced historically. This may cause them to doubt (at their peril) any need for medications, as mood symptoms may seem to them less concrete as deviations from psychological stability in comparison to delusions and hallucinations, which can be be more persuasive to many patients as signals of the need for medical intervention. Mood symptoms in the mania range are also generally more enjoyable to patients than psychoses, which might also manifest itself as less interest in medically quelling mood symptoms than psychoses. With regard to (2) many of the studies and much of the discussion I have come across that address cognitive and emotional side effects — and there is far more literature and discussion of metabolic and extrapyramidial side effects by the industry and in the medical community — includes the caveat/observation that the degree to which such side effects are the result of medications is questionable, as they may just reflect the underlying symptoms of schizophrenia. Hence my hypothesis that such side effects are more likely to be subjectively experienced by patients with more prominent mood symptoms than psychoses, insofar as mood patients’ symptoms do not mirror neuroleptic behavioral side-effects. Separately, I am curious whether, all other things being equal in terms of insight, cooperation, etc., such patients are less in need of maintenance (by virtue of their more prominent mood symptoms) and as such more likely to successfully taper. There is some discussion out there about “neuroleptic induced deficit syndrome” that does not seem to conflate patients’ underlying symptoms from the side-effects, but for the most part cognitive and emotional side effects of antypsychotics are downplayed in the mainstream literature. Hope you can shed more light on all of this.

  • I am interested in learning more about your observation that patients in your study who were diagnosed with schizo-affective or bipolar disorder complained more about neuroleptic side effects than patients diagnosed with schizophrenia. How may that be explained? What it suggests to me is that, because the underlying symptoms of the affective disorders generally do not include the kind of cognitive and emotional blunting that is characteristic of schizophrenia, schizoaffective and bipolar patients are more likely to experience such blunting as problematic when it is experienced as a neuroleptic side-effect. I would also be interested to know how bipolar and schizoaffective patients among those included in your study fared in comparison to your schizophrenic patients in their efforts to taper off of their maintenance neuroleptics.