Antipsychotics Revisited

Back in July, I wrote a blog here and an article for Mad in America titled “The
Case Against Excessive Use of Antipsychotics
anti psychabout Robert Whitaker’s lecture at the NAMI Convention that my son Max Maddox and I attended.  In the blog I talked about how shocked and confused we and others in the audience were about Whitaker’s argument that antipsychotics could cause more harm than good and that they should be used selectively and perhaps not at all.   The response to that  blog was overwhelming, with people from all sides of the argument weighing in—not just about antipsychotics, but about alternative treatments, how we talk about the experiences of psychosis,  the use of the term “illness,” and the financial interest of drug companies  that are making billions from these drugs.   There were stories from people who said that their medication saved them and from those who said going off them returned them to the self they had once been. Many said that we each need to make our own choices based on what works for us and I certainly agree.  There is no cookie cutter approach.  But we need accurate information to make the right decisions.  That can be hard to come by in a climate that has become so politicized and polarized.

But there is what we might consider good news.   In terms of the issue of anti-psychotics, it seems important factions are reaching some consensus.   In August NIMH director Thomas Insel  wrote that “results from several studies have suggested that these medications (antipsychotics)  may be less effective for the outcomes that matter most to people with serious mental illness: a full return to well-being and a productive place in society.” Some called it a victory for mental health reformist.  I prefer to think of it as a victory for those of us in the trenches of illness who want to make informed choices.

antipsychoticsBut I can only imagine how those who have been on antipsychotics for years and their families feel about such findings which also indicate that antipsychotic medications cause brain damage and worsen prospects for recovery over the long-term, and how they feel when they learn that studies by NIMH and APA thirty-six years ago (1977) were indicating that antipsychotics weren’t the miracle medications some believed.

So what are those who develop schizophrenia and psychosis to do?  In 2009, NIMH began a research study called RAISE ( Recovery After Initial Schizophrenic Episode Initiative) which calls for intervening immediately upon first diagnosis, systematically incorporating options  such as medications, psychosocial treatments, and rehabilitation, and teaching patients and families how to manage the disease. According to Insel testing is being conducted in community health centers in 23 states.  http://www.nimh.nih.gov/about/director/2013/network-solutions.shtml.  Hopefully it won’t take thirty-six years to determine the effectiveness.

In addition, much is being written about Open Dialogue, begun in Finland by Jaako Seikkula.  It requires early intervention and family and community-based therapy that involves dialogue with patients and the people most affected by their mental health crises.  Seikula recommends intervention within days of psychotic onset.   Training for the program is  now  offered in the US by Mary Olsen of the University of Massachusetts  at The Institute for Dialogic Practice in Massachusetts. Recently, the Vermont Department of Mental Health awarded a $15,000 grant to Burlington Howard Center for a pilot project — the first of its kind in Vermont — that will train staff in Open Dialogue.  Medications aren’t ruled out but are not a focus for treatment.  Though success rates are promising, further investigation needs to take place.

But what are those who have been on antipsychotics for years and who are chronically and severely ill to do?  Certainly neither Open Dialogue nor RAISE are options. What does good treatment look like for them, and where are they to go to get it?  Do they remain on their antipsychotics and simply stay the course? Is it possible for them to taper off and will doing so restore them to well-being and a productive place in the community or shatter them completely?

Fortunately Max has never been on antipsychotics for an extended time.  After I wrote that first blog, many emailed to ask what he is doing about medication and how he’s doing.  To find out visit his blog: www.walksonthemargins.com


Comments

Antipsychotics Revisited — 10 Comments

  1. I cannot imagine what my brothers’ lives would be without medications, support and community resources. My younger brother, now 59, has been stable and working recovery which includes significant use of anti-psychotic medications for over 30 years, has in fact, exhibited signs of re-entry into psychosis upon forgetting meds in recent years as he has developed more physical problems necessitating added medications (for diabetes, high blood pressure, other blood irregularities). Suggesting he stop anti-psychotic medication??? Absurd and unrealistic. My older brother has continued to work his recovery with the necessary help of community resources, medical expertise, family support and a realistic self-image and wonderful self awareness that he is a valued member of society, family, friends, community. My brothers have, I believe, in great part done well because of the proper medication treatment, respect, community resources and family support. They are the lucky ones who have access to the many components necessary for a productive life after a psychotic event. They are the lucky ones who have had advocates work tirelessly on their behalf when needed. They are the loved people whose lives have necessitated open communication within their resource community and family. To suggest medications should be discontinued, for any reason, should be a very considered and measured assessment. There are simply not the resources available for the general population with mental illnesses to get the help they deserve. Family members are not educated and react in fear, rather than knowledge. This is a very complex issue which should never be approached alone or without support from many arenas.

    • Thanks for you excellent comments, Pam. Your so right that the resources aren’t available for so many to get the help they need. And it’s good to hear your brothers are doing so well. There’s so much talk about the use of antipsychotics right now but few are talking about the real choices that people who live with mental illness have to make (with the assistance of their doctors) or the implications.

      kathy

  2. I think anti-psychotics are important for some and at some points they have kept me out of trouble. However, I think staying on them long term is asking for unlimited amounts of side effects that can develop overtime and for me they have.

    I think many times doctors are quick to prescribe them and oftentimes even do it for the kickbacks they get. I was on way too much of an anti-psychotic by my primary care doctor who I thought I could trust. I should have done more investigation, especially into his history of receiving kickbacks for prescribing it. However, I didn’t. He had me on 800 mg of it when the norm is about 200.

    When I started investigating due to some serious side effects, I started seeing a psychiatrist even though I could not afford one. Now I am happy to say that I am off that medicine and hope to never go back on it.

    I read horror stories by the way of people who could not get off of it. I would just suggest that before you take any anti-psychotic you really need to know what you are getting into. Make sure it is absolutely necessary. I am not saying people don’t need them, but I personally don’t think they should be given long term.

  3. Although I know many people with schizophrenia who have tried, in all the suggested ways, to stop anti-psychotic meds, they’ve become ill again within a year. It’s important to remember what else Thomas Insel said in the same blog:.
    ” For some people, remaining on medication long-term might impede a full return to wellness. For others, discontinuing medication can be disastrous”

  4. The Whittaker lecture Kathy and I attended left me stewing in emotion and today I am still working out my thoughts on this very sensitive issue. As I read “Anatomy of an Epidemic,” I wondered how forty years of research suggesting the dangers of anti-psychotics had been kept from me, after having been prescribed Zyprexa, Risperdal, Seroquel, Geodon, Abilify, (the list goes on) by more than a dozen doctors. The fact that I had never been warned of the real dangers of these medications only points to a narcissism on the part of my prescribers, who seemed unable to either do the proper research, interpret it, or share it. I would like to hear from some of the psychiatrists out there. I’m interested in what defense they would wage of their practices, and whether they can come to terms with the damage they may have done the most fragile members of society.

    I trust my current psychiatrist, and I know that she respects me, yet her suggestion has always been that I use a strong dose of antipsychotics for the rest of my life. It has only been by instinct, a kind of repulsion at the sight, taste, advertising, and elusive mystery of these drugs that I have kept off them long term. I am happy to say I curl up only with my Lithium at night, but feel like I dodged a bullet.
    “DUCK!” exclaimed my unconscious. I just happen to be esoteric enough to listen. My revulsion against antipsychotics has been discounted, often framed as an “addiction to mania,” irresponsibility, a refusal to accept “the facts,” opinions shared by my doctors and my family. The true pillars of psychiatry have been shrouded in scientific positivism and the immunity of “the expert,” while families have resorted to this authority in an admirable though desperate attempt to re-individuate their loved ones.

    There are doctors that are yet determined to do their job, to help us and our loved ones, but are pressured by the pantheon to assent to the agreed upon tenets of their profession. Money is in their back pockets and mysterious chemicals fill their front pockets. They must really be caught in the middle of a pair of trousers too big for them. What strategies of deceit can only be lurking, and who will own up to the responsibility? Likely it will be only the afflicted themselves. Of course there are many of us who have been taken far down this fairy road, for many the breadcrumbs have been eaten up and there seems to be no turning back even as the air freezes under the breath of a shamed profession. I applaud those renegades out there, I know there are doctors that have changed their approach at great professional cost. But the status quo has only thus far been given new faces in the fractured mirror of the lobotomy.

    It is up to the consumer to prove he or she can take their health into their own hands; these are the only individuals that ever seem to recover. Sometimes this means taking responsibility with the help of a doctor you can trust. Though from her perspective I may have put myself in further peril, my doctor was very understanding in my desire to chuck the drugs I couldn’t swallow. The change from anti-psychotics ought to be measured and done with great care. Like any good chocolate laxative, these drugs exasperate the symptoms they allege to control and it has been their “proof of effectiveness” that stopping their administration has caused severe relapse (a characteristic shared with psychotropics from anti-anxiety to anti-depressants). For those that have been on atypicals and the like for many years, specialists are required to determine the course of action. Who are these specialists? Nobody seems to know, there is no colorful advertisement with a picture of a happy guy, no clipboards, no pens, no pushers.

    But the time is nigh for change, as Whittaker, Seikula, Olsen, and their like move for alternatives based on sound science. In the meantime, we can only go on what we have: medicine and the wit to resist its false proxies, above all the determination to live our lives as they were meant to be lived, with health and vitality.

    for more information on Jaako Seikula and Open Dialogue, see my post:
    http://www.walksonthemargins.com/the-dogbone/

  5. Max, you wrote “As I read “Anatomy of an Epidemic,” I wondered how forty years of research suggesting the dangers of anti-psychotics had been kept from me, after having been prescribed Zyprexa, Risperdal, Seroquel, Geodon, Abilify, (the list goes on) by more than a dozen doctors.”

    Well, you can look no further than NAMI,the organization started by mothers who were understandably critical of psychiatrists for telling them that they were the reason for their children’s mental illness. They loved the pharmaceutical story just as much as pharma loved the opportunity that had been dropped in its collective lap. The pharmaceutical no guilt story is that mothers and fathers didn’t do this to you, it’s just bad brain chemistry and WE have the drugs that will manage that. Like every seemingly worthy initiative, from Mothers Against Drunk Driving, to three strikes and you’re out laws, these things quickly produced a social pendulum with predictable ugly consequences. NAMI, unfortunately, became the place where people were told they could get authoritative information about mental illness. Pharma lavished money on its lap dog and used its influence to discredit any dissenters.

    • Hi Joan,

      I believe parents simply want what will help their kids return to happiness and fulfillment. And I think NAMI is rethinking medication and opening up the dialogue. That’s how Whitaker ended up at the conference and probably why the new president is an impressive women with schizophrenia who takes little to no meds.

      Kathy

      • Kathy,
        You are absolutely right that NAMI is rethinking its approach, and lots of people are watching to see if it will follow through. For so many people who were helpless against its unholy alliance with pharma, this Organization has a lot to answer for. The best outcome would be that NAMI is no longer the only game in town.
        Thanks for opening up this topic.
        Joan

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