Moving Forward in the Science of Psychiatric Medication Discontinuation/Reduction

Laysha Ostrow, PhD
22
268

This week Live & Learn launched a research study on the experience of people labeled with mental disorders who have tried to stop taking psychiatric medications. This project — the Psychiatric Medication Discontinuation/Reduction (PMDR) Study — aims to understand the process of coming off psychiatric medications in order to better support those who choose to do so. The study seeks to answer the question: What helps people stop their psychiatric medications? What gets in the way of stopping?

All of the people working on this project have personal experience with psychiatric treatment and coming off psychiatric medications. In addition to myself (Laysha Ostrow, PhD), the team includes Vanessa Krasinski, MSN, RN, and Lauren Donahue, MSN, RN. The PMDR study received pilot funding from the Foundation for Excellence in Mental Health Care, and administrative support and technical support from Lauren Jessell of NYU’s Silver School of Social Work, and Bevin Croft and Human Services Research InstituteDina Tyler and Will Hall act in an advisory role.

The PMDR study is not about whether people should take psychiatric medications or not. Sometimes people who take psychiatric medications choose to stop, but may struggle to find the information or support they need. Providers who want to help often lack evidence to guide people. The study is about understanding the options for stopping psychiatric medications when people choose to stop, or when they must. My personal experience was that when I stopped taking psychiatric medications, I didn’t feel that I had any options because I didn’t know what my options were. Even though my psychiatrist was supportive of my plan, he knew next to nothing about stopping psychiatric medications. That is because there is no research on how to support people undergoing this process. That is why this research project is important. We need to take steps to create guidance on helpful options when people stop taking psychiatric medications — whatever their reason for stopping.

Our team created this survey based on what existing work in the field we could find that was relevant, as well our own experiences as people who had gone through the process of stopping psychiatric medications, and supported others in doing so. We hope this pilot study will foster more in-depth and robust research in the future. This survey is the first step in what we hope will be an expanding subject that builds evidence-based recommendations for supporting people coming off medications.

If you would like to participate in this study, you will first complete a screening questionnaire. If you are eligible, you will continue to the survey. It will take you about 20 to 30 minutes to complete the survey. Your answers will be anonymous. Your answers will be combined with others’ when we report results.

WHO CAN PARTICIPATE?

Adults ages 18+ in the United States who meet the following criteria:

● Labeled with a psychiatric diagnosis, such as schizophrenia, schizoaffective disorder, schizophreniform disorder, psychosis NOS, bipolar disorder I, bipolar disorder II, bipolar disorder NOS, major depressive disorder.

● In the last five years, took prescribed psychiatric medications for at least nine months before trying to come off them.

● Had a goal to completely stop taking one or two medications in the past five years.

We are particularly interested in hearing from people of color
and people who have experienced poverty. 

Your answers will be anonymous.

The survey will ask you about:

  • Your motivation for stopping medications.
  • Supports you used.
  • How you feel about stopping medication.

Your responses to this survey will help better support people coming off psychiatric medications.

PLEASE SHARE THIS ANNOUNCEMENT WIDELY! 

* * * * *

For questions about the survey, contact:

Laysha Ostrow, PhD
Project Director
[email protected]

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22 COMMENTS

  1. I love you want lived experience and agree we need research and data! I also agree very few resources! I shared on a Facebook public page I have Pharmacopsychiatric Industrial Complex Impact Stories.
    I am concerned because the survey rejected my input over and over. I did mgs like it says but will not accept. I know my past & current doses so, not sure the issue yet hope it can be fixed because many will give up!
    Wish I could post photo of error message will post on my Facebook page. I am just going to time out and I really wanted to get to the what worked and what challenged my recover with Psyc drugs!
    Thank you for this research.

  2. Hi Laysha,

    Can I take part?

    I’d like to take part, I’ve been seriously labelled up and I was on strong medication for years. I dropped down to very weak meds for years but I came off medication somewhat more than 5 years ago.

    I recovered as a result of stopping strong medications and I had lots of hospitalizations in the process.

    I suffered from dopamine supersensitivity syndrome – which was worse than any original problem. But I coped with this through psychotherapy and meditation.

    • Fiachra, I, too, suffered from drug withdrawal induced super sensitivity manic “psychosis.” Thankfully, my drug withdrawal induced “psychosis” was an awakening to my subconscious / dreams. And a spiritual journey, rather than anything scary. To the contrary, it was quite amazing and cool, and I was quite productive, too – rehabbed the entire first floor of my house the first summer I was ‘manic,’ and planted a beautiful rock / stream garden the second and last summer I experienced “mania.”

      And I will say when a person is going through a manic phase, exercise, spending time in nature, having a creative outlet, and the freedom to get the extreme energy out, in healthy ways, is infinitely more therapeutic than being massively tranquilized and locked inside a hospital, unable to even see the light of day, or breathe fresh air.

      In other words, the current paradigm of care is 100% the opposite of beneficial, if recovery is, in fact, the goal. But, of course, we now know recovery is not the goal of many of the psychiatrists. Their goal is to convince people they have “lifelong, incurable, genetic mental illnesses,” then create “lifelong, incurable, iatrogenic mental illnesses” in their patients, with their drugs. This is also known as gas lighting a person, and “mental abuse,” rather than “mental health care,” however.

      • “In other words, the current paradigm of care is 100% the opposite of beneficial, if recovery is, in fact, the goal. But, of course, we now know recovery is not the goal of many of the psychiatrists. Their goal is to convince people they have “lifelong, incurable, genetic mental illnesses,” then create “lifelong, incurable, iatrogenic mental illnesses” in their patients, with their drugs. This is also known as gas lighting a person, and ‘mental abuse,’ rather than ‘mental health care,’ however.”

        Perfect, every word is the absolute truth. And I’d emphasize ‘current paradigm of care,’ so as to not personalize it.

        It is not about individual clinicians, it is about the embedded and horribly stigmatizing mindset fostered in education and training, on an institutional level, creating systemic abuse. We have example after example after example. I’d be curious what the psychiatric rebuttal would be to what you say, Someone Else, exactly as you state it. I know we have plenty of evidence to back us up. It’s all in the notes…

        • In fact, I always recommend to people that they request their notes, so they can see whether or not everyone is on the same page. When I finally got my notes from the last case manager I saw (who was also senior staff psychologist at this agency), I could see clearly that I’d been betrayed, and took steps to transition out of that mess. And one of those steps was to tell this guy exactly what I thought about his “practices,” to his face.

          • “I always recommend to people that they request their notes, so they can see whether or not everyone is on the same page.” This is the best advise you could give to anyone dealing with the psychiatric industry, Alex, I absolutely agree.

            Some decent nurses in my PCP’s office finally became so disgusted by my PCP, and her coerced medication of me, that they handed over my entire family’s medical records, and told me to find a new PCP.

            And I was amazed when I read all my psychiatrist’s delusions about me in his medical records. The loon literally ended up declaring my entire real life a “credible fictional story” in his medical records. He had the wrong place I grew up, he thought one of the universities I’d graduated from was non-existent. He thought a woman contemplating going back for her master’s degree was a “delusion of grandeur.” He wrote, “not believed by dr,” after he asked me what was new, and I’d told him I had started co-chairing a volunteer organization with 250+ volunteers. I learned from reading my psychiatrist’s medical records that he was the most disrespectful and delusional person I had ever met in my entire life. I was absolutely shocked!

            Of course, Alex, I too confronted my psychiatrist with all his delusions written into his records. Then I had to leave him, due to his belief that more psychiatric cover ups of malpractice rather than confession of his errors, would be in his best interest. Which made that psychiatrist one of the most unethical and disreputable people I’d ever met, too.

            Definitely, all people should request their doctors’ notes, so they can see whether or not everyone is on the same page.

          • Yes, I was stunned when I read my notes, and I saw the same judgments and ridiculously false conclusions drawn by an extremely narrow-minded and deeply *programmed* clinician. And it explained to me the sinking feeling I’d been having more and more as we went along, that I was being gaslighted. What a friggin’ waste of time that turned out to be, he was useless. Plus, his responses to me in the aftermath also proved to me that he was delusional, as you say about your Dr. I believe it’s more common than not, this is evident now.

            I hope people read this and get that it is not only perfectly within reason, but also a legal right, to request to see one’s clinical notes, and also legally, they should be easy to attain, a simple signature of release to self. A lot of truth is revealed in this process.

            Can you imagine if, all of a sudden, clients began to request their notes in droves, to check out what their psychiatrist or therapist had been writing down about them? And they HAVE to furnish them, it’s a basic right. I think that would show a lot of client power that would shake them up quite a bit. The system is really afraid of clients with a sense of personal empowerment, I know this with certainty. Blows their whole cover.

          • Although, it’s good to pick up medical records from all types of doctors, not just the psychiatrists. It wasn’t until after I picked up records from the “bad fix” on my ankle that I completely understood why my PCP was paranoid, thus put me on mind altering drugs while claiming they were “safe meds” – her husband had been the “attending physician” at the “bad fix” surgery.

            And I had a client, who knew nothing of my dealings with unethical doctors, who spent over an hour telling me about her story of incompetent doctors who tried to railroad her into the psychiatric system because they were unable to properly diagnose a type of food poisoning. She had to go down to Mexico to be properly diagnosed – the ordeal really shook her up.

            The mainstream medical community absolutely does utilize the psychiatric system to cover up their incompetence and mistakes. And an ethical pastor confessed to me that I had dealt with what he called, “the dirty little secret of the two original educated professions.” Which means the doctors have been doing this for decades, thus in fact, all the doctors should know how harmful the psych drugs really are. All this so called “news” about the harms of the psych drugs should not be “news” to any competent doctor.

            The entire psychiatric system is one giant medical scam, an iatrogenic illness creation system, but it is tremendously profitable. Yet this means we really are dealing with medical betrayal of society on a massive scale, especially given the enormous number of children who are being force medicated, based upon made up and scientifically invalid DSM disorders. It’s truly heartbreaking.

  3. I was given Zyprexa about 10 years ago before they got busted for all the off label promotion and I got so sick from the withdrawals, nausea and vomiting weeks of it, anxiety attacks, insomnia that kept me awake till I felt like I was in hell. And hell is not all fire and stuff its fear, fear amplified to levels most people cant even imagine and your mind effing up. I complain of insomnia and anxiety and am given a “non addictive” pill that creates withdrawals so bad it almost killed me and lands me in the hospital twice. The people selling that stuff soulless cockroaches evidenced by them not warning anyone about these reactions.

    Zyprexa or “olanzapine” should be banned like Thalidomide. It is evil. The most insidious part of olanzapine’s evil is that outside observers will look at the person on it and say they look better… Maybe a person suffering anhedoinia does look “better” to outside observers than they did before for what ever reason but that robbery of everything is not “better” than much of anything.

    How is it a drug can be tested in ‘six week trials’ and go through all that FDA safety stuff but no one even bothers to pay any attention to what happens when people try and quit the stuff. Its really kind of important but gets no attention at all from the regulators.

    • The FDA is a failed regulatory program like so many others of the US government. They are bought and paid for and nothing that they approve or complain about is worth paying attention to. After all, they just approved a candy look alike speed pill for those toddlers who can’t take pills yet. In a few years they will be putting warning labels on the prescription bottles and after it has lost it’s profit potential, they might issue a blurb about some clinical research information that came out 20 years after the fact.

  4. “What helps people stop their psychiatric medications?” “What gets in the way of stopping?”

    These are the perfect questions of course. However, I was also curious about the 5-year mark. Seems that long term post-tapering would be indicative of what is possible, without the fear of relapsing.

    I’ve been off psych drugs for 14 years, after having taken them for 20 years. During the last year, I had been prescribed, and proceeded to take, 9 different drugs off all sorts. I was desperate, had student loans to pay, and did not realize that I was being poisoned. I ended up firing that psychiatrist (after letting her know very directly that she out and out disabled me), and tapered on my own.

    The mh folks predicted that I would fail in my endeavor, that it would be impossible, and I didn’t know anyone at all who had come off psych drugs, so I was on my own. 14 years later, I’m healthy, grounded, and living a good life, the way I had intended.

    This is what helped:

    Support from real and authentic healers. I sought teachers and practitioners who worked with energy, Chakras, grounding, and heart healing. I found a brilliant 5th generation herbalist who knew how to help me detox, regenerate what had been damaged from the psych drugs, strengthen my nervous system, and bring all of my organs back into balance. She was extremely nurturing and supportive, like I’d never experienced in the mental health world.

    I did many things recommended to move and balance energy, such as acupuncture and Chi Gong. I found Chinese Medicine to be invaluable when detoxing from psych drugs.

    Not only does our body go through core readjustments, but also the issues which were suppressed by the psych drugs do surface, so those must be addressed, somehow. I like to recommend psychic healing, which many say one good energy healing is like years of therapy. That was my experience, as well, when I was healing. Really cuts through our inner muck in order to get the clarity we seek, and provides hardy quantum healing.

    And, most importantly, I had to really and truly forgive the past, own my life, and learn to make better choices for myself, based on my own inner guidance and not based on the judgments and expectations of others and society as a whole. That is, I had to see through all of the bullshit lies and programming from our media, etc., and wake up to who we really are and acknowledge the need for radical change. I embraced my own transformation in this process, with trust. Trust is a vital factor in healing.

    This was the time I really and truly learned that my life was my own and I was free to find the perspective that worked for me, and that allowed me to take control of my life experience as well as my destiny, by working with nature and the universe as support and guidance. I became fully independent of what others believed, in order to find my own spiritual nature, beliefs, and values which made me feel aligned with my true self. These were the most powerful and healing lessons.

    I also learned to be grateful for my experience, regardless of anything, as this is how life was teaching me what I most wanted to learn. That was a hard one, but well worth the effort to practice this. Very rewarding, in many ways, and spiritually and emotionally uplifting.

    What gets in the way of stopping, I believe, is a lot of fear. Being around naysayers doesn’t help, either. Some people get serious jealous of those that are growing and evolving, and that can lead to sabotage. It can be quite insidious, just a heads up here. This is when we can really learn good lessons about what is good for us vs. what is not at all helpful, and in fact, an drain to our energy.

    It can be tricky, because as the real issues surface to be addressed and healed, it can be a pretty bumpy ride. A healer put it to me this way, “The waters are going to get rough, but you are not going to drown.” That was pretty much right on target. Change is not easy, and detoxing from damaging drugs make it all the more challenging.

    Best thing is to have safe, respectful support from someone you trust, and who you know has good resilience. Getting away from toxic people, who will only want you to go back on the drugs, and make you feel bad from healing, is also an excellent way to self-care. Strong, self-loving boundaries are essential.

    • A left out one thing–I also had to work hard to re-build my inner ecology (gut flora), which is feeds our natural auto-immune/self-healing mechanisms. The psych drugs pretty much destroyed this, which is why I feel there are so many physical illnesses related to taking psych drugs: it’s because the drugs undermine our immune system.

      Healthy inner ecology also leads to a relaxed heart and clear mind, it is all directly related.

  5. I don’t meet the criteria for the study but I look forward to seeing the outcome. 🙂

    I am in the UK and withdrew relatively easily from venlafaxine, after 18 months of use. I had a good GP and made an informed-as-possible choice before ever starting the medication, and I think that having done some research before I started taking the meds in the first place helped me to feel more settled and in control of the discontinuation process.

    I think I took advice from one of Joanna Moncrieff’s blogs about crowd-sourcing information about what to expect when discontinuing any given drug. Reading about others’ experience was a mixed blessing. In the event, my own discontinuation experience was nowhere near as difficult as many of the horror stories I had read, and I think it might have been even easier without the anxious expectation that Something Really Bad was about to happen to me, in the way others had described. On the other hand, I really did benefit from the experience of others when it came to deciding on the method of discontinuation. Standard medical advice seems to be written by people who know not their half-life from their elbow! Taking it very slowly, and splitting low dose pills as far as possible worked best for me, and I learned how to do this from following the stories of other patients who had gone before me.

  6. Dr. Ostrow:

    I didn’t understand your reason for including this comment in your post about the research:

    “We are particularly interested in hearing from people of color and people who have experienced poverty. ”

    I didn’t think you wanted to particularly encourage or discourage anyone who met the diagnostic criteria and medication stoppage you mentioned.

    • It does seem many of us asked about the 5 year cut off for taking this survey, so perhaps you could answer that question publicly, for the many who asked about it here?

      Also curious if you’ve fixed the problem which prevents people from completing the survey, since your survey won’t accept the drug quantities inputted by the survey taker?

  7. I was watching a presentation by Robert Whitaker presenting hes findings in Denmark (youtube: poet dox) and a person in the audience asked about the increase of the dopamine at the acute state of the schitsofrenia. I was wondering does anyone know about studies if this sudden increase has been linked to 1) mechanism of brain trying to heal itself or 2) some harmful counter-productive action ?