Pioneering New Zealand Antipsychotic Medication Study Focuses on Patient Experiences

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My friend and colleague Miriam Larsen-Barr from the University of Auckland in New Zealand recently completed doctoral work on antipsychotic medication. Her newly released research study, “Experiencing Antipsychotic Medication: From First Prescriptions to Attempted Discontinuation”, focuses on an in-depth survey of 144 people’s personal experiences taking drugs such as Seroquel, Olanzapine, Risperidone, Geodon, Haldol or Abilify — including 105 people who had tried to stop their medications at least once. This was followed up by a series of interviews with seven women who had successfully stopped their antipsychotics long-term.

Rich with personal voices and perspectives, the study is an invaluable contribution to the body of institutionally legitimized evidence justifying new approaches to medication prescribing. It is the largest study to date on the subjective experiences of antipsychotic withdrawal, and the first to explore how people who have successfully stopped antipsychotics are able to maintain their well-being. As Larsen-Barr writes, “The results support an argument for informed choice and improved supports for those who would prefer not to take antipsychotics continuously in the long-term.”

Here are some of the key findings:

Response to antipsychotic medication use is widely diverse. “Individual variation appears to rule the day, and what is one person’s life‐saving relief or useful tool is another’s personal burden, nightmare or hell.” Study participants who came off their medications reported that withdrawal effects were also wide ranging and diverse. Some had few problems at all, and others had huge difficulties, including one person who reported, “I have come down off illegal drugs before and the withdrawals were worse than that.”

While the majority of people still taking antipsychotics said the medications improved their quality of life, the majority of those not taking them said medications made their life worse. So did taking medications lead to a better quality of life? The study shows that for all participants, quality of life was far more determined by non-medication factors such as working, going to school, coping, and having social support than it was by whether or not someone was taking antipsychotics.

These findings, around response diversity and life quality, suggest that prescribers need to emphasize antipsychotics as an unpredictable approach rather than a clinical necessity, and focus on psycho-social solutions proven to promote recovery. This is consistent with approaches that achieve high recovery rates, such as Open Dialogue in Finland, where vocational and education supports are paramount.

The majority of study participants surveyed attempted to stop medications at least once, despite half of them not having any support whatsoever to do so. Many even reported keeping their decision to try to come off secret. These findings are consistent with reports from the survivor movement, and point to the clinical failure to overcome the taboo around discussing medication withdrawal.

The study also demonstrated that many people can stop taking antipsychotics and go on to experience positive recovery outcomes. One participant reported, “I manage my mental health well. I have occasionally visited [a] counselor since stopping medication, but mostly use my support network for help now. [
] I am now a thriving individual with a great job; lots of future prospects; and wonderful people around me.” Success with medication withdrawal appeared to be closely related to having support strategies and plans, further suggesting the need for greater clinician collaboration. While gradual reduction was generally more successful than abrupt withdrawal, success overall appeared to be not at essence a prescribing challenge or question of dosage or tapering rates. Instead, the study supports understanding successful withdrawal as a relational process, with positive outcomes resulting from social support connections that reduce fear surrounding the medication experience.

What made withdrawal difficult? Here’s some what study participants reported:

“People over analysing my every mood and suggesting that I was becoming unwell.”

“Family fear…they believed that I would fall over/ fail and burden them again.”

“Judgement about the fact that no one thought I was ready and tried to force me to take it instead of letting me make my own mistakes and learn from them.”

Participants maintained their well-being during and after antipsychotic withdrawal by understanding themselves and their needs, finding and using strategies that work for them, and connecting with supports. According to women interviewed in a follow-up:

It’s really important to be aware of your triggers and know what signs of un-wellness look like. And even now, if I’ve been really busy, feeling a bit stressed, have had not a good night’s sleep, I will actually reality-check. I will check in, like, I know the kinds of thinking that go with being unwell. And so I’ll run through like a tick-list, in my head. And go, well, how do I feel about this? And how do I feel about that? (Rebecca)

It’s like you can sink to the bottom and then kick start off the bottom. You know, people drown in shallow water just fighting it the whole time [
] It’s there to be used. [It’s] acceptance. It is a few simple words, you know. Like close your eyes, where in your body do you feel this emotion, is it okay for it to be there. It’s just so easy. Fighting something is so hard, accepting something is so much easier. (Carley)

I guess, when you’re taking away one of the things that’s holding you, making sure that those gaps are filled. Whether that’s with the supportive others around you, whether it’s the mindfulness, whether it’s the creative stuff, but making sure that you’re not falling through a gap that you’re knowingly creating for yourself. It’s not one piece of yourself in isolation, it’s supporting yourself in all of those aspects that help. I think for me it’s keeping a balance of all the strands really. (Sarah)

You can read Miriam Larsen-Barr’s study “Experiencing Antipsychotic Medication: From First Prescriptions to Attempted Discontinuation” here.

You can also find Will Hall’s Harm Reduction Guide to Coming Off Psychiatric Drugs here.

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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17 COMMENTS

  1. First of all it is not “medication”. Medication is for true disease, where we know there is nothing wrong with the brain. The Master or the Psychiatrist calls the drugs “medications” so the prisoner-patient must also call the drugs “medications”. If the patient does not agree with the master the prisoner-patient does not get their freedom.

    Regarding “antipsychotic withdrawal by understanding themselves”
    My number one piece of advice is to keep a logbook of ones feelings + thoughts and daily events. Re-read from time to time. Hand written so you know it is “you” who wrote it.

    Second is to get a digital camera. Use today’s technology to help establish reality from fiction. A photo rarely can lie.
    Third is eat healthy and get exercise during the day.
    Fourth is remember people will judge you by you appearance . If you look crazy , they will think you are crazy and treat you as if you are crazy. So look/smell clean and wear clean clothing.

    • That was exceptional, and I agree with what you say 1000%! Thank you very much.

      I was put on SEROQUEL and I felt like someone had imprisoned my brain. From 5/15/2016 until 12/6/2016. My psychiatrist, after I told her the stuff was EVIL regarding what it was doing to me and my life, as all I wanted to do was sleep and escape more and more, plus I was suffering from PTSD after being in two state hospitals (NH)….the first one 5/15 – 5/25, and transported “in handcuffs for no reason in a police car”! to the next hospital because the first one told my family I had had a psychotic break, which I did not and they never discussed any of my experience with me….. (I had carefully weaned myself down and off Lexapro (20 mgs./day since 2004) which took me 7 months….well…I thought I was free and clear and felt great…..I also decreased my Armour Thyroid and added Kelp and Himalayan Fine Pink Salt to my diet for the iodine….BIG MISTAKE and stupid…..after 4 weeks of being free and clear of Lexapro and decreasing my thyroid med from 60 mgs/day to about 40 for a few wks I am not clear about time-wise….I began to nose dive and ended up suicidally depressed and getting worse and worse until I wanted to suicide….the police 911 was called for an ambulance….big mistake…..and instead of being placed into a private hospital like I have been in years past when something would go awry, I was placed in the hands of state psychiatric hospital laws and workers. The last hospital forced me to stay a total of 37 days. I’ve never had to stay more than 7-10 days no matter how severe, and I was helped and almost good as new after that short period with compassion and well trained psychiatric assistance and peer support from fellow patients and in group sessions. The state hospitial was so unbelievable in their indifference to the patient, their ability to get your peers to rally AGAINST you, and their preference to the Pharmaceutical Companies’ research needs/goals/agendas and their own, that I was asked questions like I was an animal under a microscope being analyzed for their betterment, all the while being under the influence of Seroquel which was given to me by an RN in pill form, and then stealthily added to my food and drink! How the heck does one measure that cumulative amount? Seroquel’s taste when put into food is so strong and distasteful, I knew something was terribly wrong. The next thing to tell me something was wrong was when my throat began to not be able to swallow. When I attempted to ask about ANY detail regarding medication, which I have always read the drug insert sheets and been encouraged to ask questions of a PRIVATE HOSPITAL’s psychiatrist and RN’s and staff, at the state hospitals, I was told in no uncertain terms that I would be written up as NON-COMPLIANT if I did not take the medications I was given immediately when they were given, no questions, no feedback. I thought they were trying to kill me. I advise anyone needing hospital care to make sure you research where the private hospitals are for your state, and find out who owns them. Pls. be aware that if it is state run, they may lie to you and/or your family and tell you and them that they have no affiliation with the state or another state hospital. This is what the first state hospital I was sent to from an ER told my family. Then they shipped me off to another state hospital that they are responsible to staff for the psychiatric facility. It is getting very dangerous out there people. Know your action plan and where you prefer to go, and tell your loved ones so if you have a depressive episode, or physical problem where you are not able to communicate clearly, it won’t interfere with obtaining the best care you can locate and prepare to receive. This state hospital will not give me a bill regarding the 37 days they forced me to stay, because I am on Medicare which they are not accepted by for billing any services they rendered to me (if you can call them that….it was a complete travesty) and I was told they are working toward putting a lean on my home and searching for anything I have that they can attach and convert into monies. They hauled me into a mental health court when I was totally out of it on Seroquel, and tried to get me to sign a blank judgement form with a real judge at the helm, two NH state attnys (one assigned to me and absolutely unhelpful), and a variety of other state people who I had no idea who they were or who they represented. A nightmare. I’m having to secure an attorney to straighten this mess out. The last state hospital wants me taken off Medicare and put on Medicaid so they can bill them, and also control my life and monies and haul me back there within the year of the ridiculous judgement that was given which was handed down specifically to control me as a future and perpetual source of money through being pulled back into their clutches at their whim. I should have never been brought into a mental health court, as I did not harm or attempt to harm myself or anyone else. I had a plan, but I did not implement it! All those days, wasted and instead yielding me terrible side effects and paranoia and PTSD, which I recently left behind on 12/26/2016 after being released on 6/30/2016. Praying to God helped me immensely, along with watching joycemeyer.org ministry via wifi which saved my mind and life. God bless everybody out there.

  2. Thanks Will.

    I think the key takeaway from this study is this:

    “quality of life was far more determined by non-medication factors such as working, going to school, coping, and having social support than it was by whether or not someone was taking antipsychotics.”

    It is as I have argued before on this site: tranquilizers for pseudo-illnesses are not such a big deal. If there weren’t so much money to be made from drugging people up, we wouldn’t even be talking about the pills for non-illnesses so much.

  3. When I told friends that I was tapering my psych drugs, by far the most common response was, “we’ll be here for you when you come to your senses and go back on the meds”. Based on my experience successfully withdrawing, I now recommend to others that they test the waters first before telling people their plans. Ask questions like “what would you think if I were to attempt to go off meds?” If they respond positively, consider adding them to the list of people “in the know”. Anyone who gives an equivocal or negative response to that question should not be told until well after the successful withdrawal is complete. It’s very sad that we need to consider that not everyone will be supportive, but it is a fact.

    • When I went off psych-drugs, it wasn’t something I talked about for the very reason you mention, but that was common sense at the time. As you say, before anybody talks in detail about the subject, testing the waters is a very good idea. Friends can be the most problematic, depending on how close people are. You just can’t expect them to always be supportive when they might be thinking that psych-drugs are more beneficial, for you in particular, than harmful. It’s not a crime, of course, but some people would like to treat it like a crime, in which case, trash the evidence, and seal your lips. The less people know about you taking the matter into your own hands, the better. Except, perhaps, in places like chat-rooms and forums expressly for folks that are tapering off, or have quit, psych-drugs.

    • Don’t tell anyone you are withdrawing. The average person believes 100% in the magical medication. The believe in it for their own fear of madness.
      If asked about it, to ease normal peoples fears, just say ” It is between me and my doctor what medicines I take”.

      • markps2
        “just say ” It is between me and my doctor what medicines I take”.”

        Sage advice indeed, and the only way I have found to circumvent people’s overwhelming insistence that I’d be better than well if I’d just persist in finding the right combination of “medication”.

        That I persisted in seeking that combination and ended up very actively suicidal, psychotic and totally unable to function because of those “medications” is totally irrelevant to them (and the doctors).

        I no longer have any engagement with psychiatry and haven’t taken “medication” for 7 years, but for a few years, if anyone asked or commented etc, I also say, “That’s between me and my doctor”.

        Since I have moved to another city and formed new friendship groups no-one asks, and it’s nice not to be judged and pressured.

  4. Hi, Very Interesting Article,

    I suppose discontinuation is a very individual thing. The “drugs” disabled me – but I had to taper off them very carefully with suitable psychotherapeutic help.

    Personally speaking I couldn’t see myself cutting strong tranquillisers successfully without having some means of dealing with the “mental problems” that the presence of these drugs (in my body) had caused.

  6. It’s good “patient experience” is starting to be taken into consideration, since common sense would dictate that a person with personal experience of a drug’s actual effects would, of course, know more than short run profit only motivated, psycho pharmacological fraudulent, “evidence based” medical research.

    Thanks for all you do, Will. Where there’s a Will there’s a way, which is a philosophy which rather points out the obvious importance behind the finding that “quality of life was far more determined by non-medication factors such as working, going to school, coping, and having social support than it was by whether or not someone was taking antipsychotics.”

  7. My 2 cents: I very much tryed to hide what i was doing to my psychiatrist.
    I was lowering by 10% my psychiatric drug (was only taking 1), and my doctor refused to lower it further, for months (despite i never had a relapse, and was doing well).
    So… i hide it, from all health professionals (except my long term closest friends).
    But it was so easy to reduce… that i taked too much to my terapist (not my psychiatrist).
    Never passed my mind she would TELL EVERYTHING.

    She did. And my psychiatrist is mad. Seh considers i lied, and no longer trusts me.
    You have been warned.

    And yes… in my humble opinion… i am doing better than the people that can be compared to me (same medication history, same doctor, same environment). Despite that… since i no longer take ANY psychiatric drugs (for over a year), i am considered a risck. My whole positive experience is fully desmissed… until 5 years have been passed. Silly?

    Dont trust, dont tell. Is safer, and psychiatrits dont know to teach to whithdrawal, anyway…

    Happy 2017.

  11. will, thank you for presenting this relevant reasearch and its findings. however, as i am currently undertaking some search into studies on this topic i need to oppose your statement that this “is the largest study to date on the subjective experiences of antipsychotic withdrawal, and the first to explore how people who have successfully stopped antipsychotics are able to maintain their well-being.” back in 2004 a UK based survivor team coordinated by jim read conducted a research into the ways people cope with coming off psychiatric drugs. that study comprised 204 short and 46 in depth interviews with service users and the excellent report “Coping with Coming Off” was published by Mind in 2005. larsen‐barr also refers to this source. jim read extended the findings of that study into a comprehensive book publication “Psychiatric drugs: key issues and service user perspectives” that was published in 2009. from the perspective of my own and other survivor researchers’ struggles it greatly upsets me to see how our pioneering work gets erased as soon as our topics finally find their way onto the dominant research agenda. it is certainly positive that the way we experience drugs becomes the topic of research in 21st century but lets pay some more attention and appreciate our own history while applauding this new development. if we don’t do that i don’t know who else will. hope u don’t mind me telling you this.

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