Coming Off Psychiatric Medication

One person's experience

The post we made earlier this week with part 1 of the transcript from Episode 34 helped me realize that I should say more about my experience of stopping medication. Please know that everything in this post is based on my lived experience as a former patient. I’m not suggesting that anyone else should do what I’ve done.

As a high school student, I wanted to be put on medication for my perceived mental illness. In retrospect, I can tell you that my experience of overexcitabilities and unilevel dynamisms, such as ambivalence and ambitendencies, often led me down the wrong path.

The first diagnoses I received as an adolescent were depression and depersonalization disorder. I spent years dissociating as a teenager and as a young adult, and I was disconnected from my body. I felt like an observer who was watching my other self regularly go off the rails.

My emotional intensity is what led me to think I was mentally ill. When I felt things, I seemed to feel them so much deeper and more intensely than other people did. I experienced dramatic mood swings and explosive outbursts of anger. I had no capacity for emotional regulation.

Photo by Stephanie Klepacki on UnsplashPhoto by Stephanie Klepacki on Unsplash

I experienced frequent headaches and other somatic issues that led to doctors and CT scans, EEGs, and regular visits with a neurologist by sophomore year. He put me on Elavil (amitriptyline) for the headaches even though what I really wanted was Prozac, which was still new after coming on the market in January 1988, the year before.

I took Elavil throughout high school and stopped taking it when I was 18 years old. These are the thoughts I recorded that day:

“I can’t believe I’ve finally been taken off Elavil. What am I gonna be like? It’s been a long time since I started it.” (November 1, 1991)

I can’t capture all of the nuances of my medication story in this post, but I was put on Lopressor that fall for panic attacks. I experienced episodes of fainting that brought me to the emergency room multiple times and led to seeing a cardiologist because I didn’t realize it was anxiety and not a problem with my heart. I talked about it on the podcast in Episode 7 with Fiona Smith.

From November 1991 through February 1993, I took Lopressor—a beta blocker—but no psychiatric medication.

In February 1993, I was diagnosed with bipolar disorder after two sessions with the campus psychiatrist at Arizona State University. Here’s what I wrote:

“I started on lithium today. I have bipolar disorder. My DSM code is 296.70.¹ I've been in a good mood all day because I have high expectations. I want this drug to make me a normal, functioning member of society. There's nothing to be ashamed of. It's not my fault that I have this problem. I'm going to try and be positive.” (February 10, 1993)

Suffice it to say that my high expectations were unrealistic on multiple levels:

1. Even if lithium helped stabilize my moods, any enduring change and progress would be the result of deliberate inner work along with the medication. It would be many years before I realized it takes more than a pill to develop oneself.

2. There was no medication that could make me “normal.” This was a misguided goal on my part and something that I didn’t figure out until I was in my early 40s.

3. The way I saw my struggles as a problem to be solved by means outside of myself was hugely problematic. In fact, it was at least partly my fault that I was having the issues I struggled with during that time. I was not making any real effort to change and grow.

I only took lithium for about six weeks before stopping it without permission. I left ASU at the end of the semester and returned home to Connecticut. It was exactly one year later, in 1994, when I went back on medication. That was the point when I began to strongly identify with the diagnoses of bipolar disorder and panic disorder. At the time, my life was spiraling out of control. Unilevel disintegration can be considered a narrowing of consciousness, and at first, the psych meds opened things up for me. It was a relief to experience a break in my suffering.

In Episode 34, I said, “I had been taking medication for 23 or 24 years. I didn't even know who I was [without medication].” It was February 1994 when I started first on Prozac and Xanax and then continued taking Prozac and Klonopin for years. Lithium would soon be added, along with Haldol.

Here are the 30 different medications prescribed between 1989-2017, roughly in order from first to last (brand names only for convenience):

Elavil, Lithium, Prozac, Ativan, Xanax, Klonopin, Haldol, Trilafon, Depakote, Zoloft, Mellaril, Paxil, Serzone, Navane, Tegretol, Lamictal, Zyprexa, Seroquel, Thorazine, Buspar, Wellbutrin, Remeron, Effexor, Risperdal, Neurontin, Restoril, Ambien, Cylert, Abilify, Adderall XR.

Between 1994 and 2017, the only break I had from taking psychiatric medication came when I was pregnant in 2005-2006 and through the first six weeks of my son’s life.

Non-compliance

I don’t want to give you the impression that I was always a compliant patient who did what I was told without question. When it came to taking medication during the roughest years of my mental health history, I often took more or less than what was prescribed or stopped taking certain drugs when I didn’t like them.

My period of non-compliance coincided with the time when I was doing the worst—1996-1999—which included ages 23-26.

Here’s the first mention of non-compliance in the fall of 1996:

“I'm no longer taking Depakote or Zoloft. I refuse to admit this to Dr. B, though. Then he'll yank my Klonopin or do whatever psychiatrists do when their patients become non-compliant with medication. My mind feels so much clearer already.”

This became a pattern. I went off medication whenever I felt like doing so. Typically, I stopped taking mood stabilizers and antipsychotics, but as you can see above, I’d also stop antidepressants when I didn’t think they were working well. Or when I was protesting the status quo.

My world shrank considerably during that period of my 20s. It felt like I had little control over myself or my life, and one of the things I did have control over was my medication.

It’s important to acknowledge that in 1997, things changed for the better with my doctor. But our improved relationship made me more likely to be non-compliant because I enjoyed talking to him. Having questions about my medications gave me a good reason to call. I saw him every two weeks for months at a time when I wasn’t doing well. It was the relationship that was helping me, not the drugs.

I mentioned in Episode 34 that at one point, I took 17 pills per day. Here’s the excerpt where that number was mentioned in January 1997:

“The medication that I'm taking (I'm being compliant) is actually working. Finally—even though I have to take 17 pills per day. That seems a little crazy to me. That's an issue to deal with Dr. B about. Even though I've complained about it many times before and he never changes his mind. I just feel at 23 years old, I'm too young to need all this shit. It wouldn't be so annoying if he could give me bigger doses—it would cut down on the number of pills that I have to take. I don't know, maybe I'm just whining. As long as it works, who cares?”

Since this part of my life was mired in unilevel disintegration, we would repeat these arguments and issues.

I struggled with ambivalence and a lack of direction in my life. I had no sense of higher vs. lower behavior, and I saw coin-flipping as a way out of making my own choices.

“I flipped a coin to see if I should stop taking Tegretol—and four out of five times, it told me I should stop. It may seem like a silly way to make a decision, but it's as good a method as any. I'm still not sure what I want to do, but I'm closer than I was. I also flipped a coin to see if I should call Dr. B and tell him I don't want to take Tegretol. Four out of four said yes. So, if he calls, I'll tell him. He might not. I feel bad calling to say that I'm going to be non-compliant, but that's what I've been told to do.” (July 1997)

These excerpts represent well that deeply unilevel time in my life. I was the cause of my own suffering, but I couldn’t find a way out of it. It would be two and a half years before I made the decision to change and acted on it.

When I moved to California in October 1999, I vowed to stay away from hard drugs and stop getting in my own way. Part of the change was becoming a compliant patient and not discontinuing medication without talking with my provider.

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Challenging the Known

By the time I began the autoethnography in 2014, I’d been a compliant patient for nearly 15 years. As I mentioned to Emma in Episode 34, “[Discovering TPD] definitely permeated my consciousness in a way that immediately led to cracks in the foundation of my belief about myself as mentally ill.”

Throughout the first year of autoethnography, I considered my past through the lens of giftedness and assumed I had an undiagnosed mental illness until young adulthood. I studied carefully the therapeutic relationships I’d had when I was younger. I struggled with the disparity in treatment I’d experienced from clinicians. When I recognized how misunderstood I’d been by some of the therapists I’d seen, it made me want to somehow work for change and help other people avoid what I’d gone through, as seen here:

“I expected to find that I’d been misunderstood. But the ramifications of the lack of understanding caused great harm. This project needs to convey the urgency to rethink our societal perceptions of mental illness. It needs to be a call to others who also have the ability to share their experiences. The dehumanization I experienced after a lifetime of being treated as gifted and valued was devastating.

In the end, Dr. B helped me grow up, and he provided something very valuable. He helped me grow by allowing me to be vulnerable with him, and trust him. He told me things that I needed to hear. Not that he was perfect, but neither was I.” (September 2014)

Even though I was thinking about rethinking societal perceptions of mental illness, what I had in mind was different than what you might expect. I wanted to reduce stigma so that this population would feel less broken. I hadn’t fully realized the implications of positive disintegration as an alternative framework.

It was thanks to Dr. Linda Silverman that I reconsidered the bipolar diagnosis in August 2015. I’ve written about it before:

“Linda asked if I’d ever examined my journals and looked at the patterns of my moods without searching for pathology. She asked if I’d ever been able to look at my past without assuming I was mentally ill. I told her no—I had only searched for evidence to support my existing beliefs that I’d been sick.”

The only way to know whether or not I could live without a mood stabilizer was to stop taking one. I thought about it carefully and decided to discontinue Lamictal (lamotrigine). I let Jason know, and I talked with my friends Helen and Celi—I discussed this story with Celi in Episode 31: Gifted Connections.

I noticed no change at all from coming off Lamictal. I let my provider know that I wanted to stop taking it, and she gave me her blessing. She suggested I discontinue slowly, but I chose to stop immediately.

I carefully monitored my moods so I might be aware if a depressive or manic episode emerged. It didn’t come. That was nearly nine years ago. The following entry is an example of how I slowly became aware that I didn’t have to constantly be on the lookout for symptoms of bipolar disorder:

“I'm feeling pretty moody right now. But as I think about it, I'm blown away at the way I used to assume it was problematic or indicative of dysfunction. I have every reason to feel a little moody—there's stress from multiple directions. It's naturally going to be tougher to deal with stressors when my sinuses are bothering me, too. So, again, I'm finding that what I used to assume was "too" moody is just normal for me and not inherently unhealthy.” (November 12, 2015, age 42)

I’ll be honest and tell you that when I stopped taking Lamictal, I never imagined I’d stop taking Adderall and Klonopin two years later. I expected to take those medications for a long time. I had no intention of stopping everything. I didn’t think that my ADHD or anxiety could actually improve, let alone improve to the degree they have in recent years. I don’t experience anxiety anymore, and that happened without me being aware that it was even possible.

When I talk about medication as a very nuanced issue that’s different for everyone, I mean it because we all respond differently. While I never saw much of a difference in my life from taking mood stabilizers, I saw major benefits from Adderall.

Would I have been able to sit down over the course of six months and read all of the English works of Piechowski and Dabrowski in 2016-2017 without Adderall? Would I have been able to code the Multilevelness Project data, which was a painstaking process done over the course of a week in QDA Miner? I can tell you that the answer is no. The fact that I was taking Adderall XR—the extended-release version of the drug—supported my early work with the theory of positive disintegration.

I believe that taking Adderall helped me change my habits and learn how to regulate my emotions more effectively than I had ever been able to do before taking it. I’d also had a very difficult time with my energy levels and often felt by afternoon like I couldn’t make it through the day before Adderall.

Knowing that starting Adderall had been a life-changing and positive move in August 2013 may make the decision to stop it in August 2017 seem surprising.

Being able to shut the world out and focus completely on reading and writing was great for studying the theory. It did allow me to work at what, in retrospect, seems like a superhuman pace and level of intensity. But there were consequences.

First was the parenting consequence of focusing so intently on my work that I didn’t have time for my child. Last week, while having a conversation with my nearly 18-year-old son, I realized how well we’re connected right now. He’s no longer looking at me with the contempt of someone whose parent is a workaholic.

During the Adderall years, when he would come into my office to talk to me, I was likely to tell him to wait or stop distracting me while I was trying to write. There’s much more to say about the hard lessons I learned once I stopped taking medication and woke up to the reality of my life as a parent.

The other consequence was the way I was overwhelming Michael with my writing and thoughts in 2016-2017. During the first two years of getting to know him, I wrote more than 300,000 words in emails. How can I even describe how I never stopped thinking about the theory during that time and struggled to disconnect during holidays and vacations? The best example is Christmas 2016 when I spent several hours in my office working on Piechowski (1975) in QDA Miner instead of with my family.

The focus on work meant I wasn’t taking care of myself well. On the first two driving trips to Wisconsin to visit Michael in 2017, I made many mistakes in misjudging how long I’d gone without eating, sleeping, and tending to my basic needs. The decision to stop taking Adderall was a choice to tune into myself and my environment more than my work.

Distracted by everything

It was thanks to Michael that I stopped taking Adderall, although that certainly wasn’t his intention. He had no idea that his words would lead me to abruptly stop taking medication, but that’s what happened.

It happened about a week after SENG 2017, which had been an exciting and overstimulating experience. I presented my work for the first time in the gifted community and could barely calm down enough to deliver the session. Upon returning home, I shared my thoughts and impressions with him via email.

I began to realize that I had no tools for managing my intense emotions and anxiety. I’d relied completely on medication without developing my own personal practices. This awareness was deeply uncomfortable, and I started writing to Michael about it by mid-August 2017:

“This is how stress is for me. It is like my mind is trying to go in many different directions. Normally, my multiple trains of thought are harmonious, I can see that now. When I was young it was not so easy to discern. The more distress I feel, the worse it is. It becomes harder and harder to bring my thoughts under control.” (August 11, 2017)

By describing these experiences to him, I hoped he would have some suggestions for what I could do to help myself. It was easy for me to see the progress I’d made in recent years even though I was still suffering:

“Back in the day, this kind of mental stress would have been overwhelming. And I would have been even more difficult to deal with. Make no mistake, though. My brain is so far off track that it kind of hurts.” (August 12, 2017)

The next day, on August 13, I sent this message to Michael indicating that my level of mental distress felt too high and I needed help:

“What I have been going through this past year has been incredible. Things that used to become problematic and derail my entire life still happen to me. This past week is an excellent example. I have wondered, in recent months, what to do. I asked you at one point, but I don't think you understood what I meant.

The urgency I feel can't be pinned down to any one thing. The number one, most critical, urgent thing is that I need your help controlling my mind. Surely, you must be able to see that. Look at how I self-regulate at this point—I read your messages. It helps me calm down. Sometimes, I listen to the Polish recordings. You are the key to my ability to calm down, but only in this crude way that I've managed.

Can you please, somehow, figure out a way to find time to help me so that I can do what I need to do? It's like torture for me.

Yesterday, I read the first fifty pages of Martha Morelock's dissertation.² Because, like your work and Linda's, I am drawn to her stuff. And I found some answers already. In multiple ways. One is this description, which is me, all my life:

“Lovecky reports that they may give the impression of being bewildered, muddled, and illogical in their thinking. Their minds may string associations with such rapidity that when asked a question, the rendered response—rather than being the one most logically immediate to the query may be one several levels of association away from the initial question. When confronted with a question, they may find it difficult to pin themselves down to a particular answer since they are so keenly aware of the multiple possibilities for response. They may at times have difficulty translating their thoughts into simple terms, thus appearing to have the information "trapped" in their minds with no way to get it out. They may solve a problem in their heads, but then have no idea of how to translate the solution or the process they went through in reaching it to the person who posed the problem.” (pp. 1-2)

I need your help. I'm sorry. I know you're 83, and I totally get it. That's why I'm trying to figure out how to help you help me. I need to learn how to cope with the above problem. How? Who can help me?”

I wrote more to him over the next day, and reading these emails now shows me how much I was still suffering from having a mind that felt out of control. It feels nice to recognize how long it’s been since I have felt that way.

Michael finally responded with this email that will forever be remembered by me as the moment when I realized I needed to stop taking medication.

“How do you think I can help you? You are taking medication and I know nothing about this kind of thing.

As for slowing down your mind, all I do with the kids at Yunasa are psychosynthesis exercises, which help them relax and experience a moment of peace.

The way I see it, you want to charge full blast into action to correct the errors of the past regarding TPD, bring it to more people, and help all gifted 2e kids and their parents. Unfortunately, at this point, you don’t have a base of operations. The question is, what do you need to do to acquire such a base? Of the multiple possibilities you consider, you have to choose the one you will follow.

The Way of the Peaceful Warrior is a true story. A young gymnast meets an old man at the gas station. He finds out that the old man knows some moves that defy gravity. Among many insights and lessons in the book (there is also a good movie), the principal one for all who want to improve the world is this: you have to have the right leverage at the right time. To achieve this, you need to work steadily and patiently.” (August 14, 2017)

At first, I reacted badly to this message because my mind was too overwhelmed to think about what he was saying. I took “You are taking medication” badly because it reminded me of times in the past when people had implied I needed it because I was crazy.

Still, I did purchase the Kindle version of The Way of the Peaceful Warrior so I could begin reading it immediately. I replied and asked him if he might consider recording the exercises they did with the kids at camp so I could use them to calm myself down.

And I decided to stop taking Adderall and Klonopin. When I woke up the next morning, I didn’t take my medication. Here’s what I wrote in my journal that day:

“It has been a week filled with revelations. They are flying at me.

Today, I stopped taking Adderall. No more medication. How can I hope to differentiate OE from mental illness if I am taking medication?

I'm excited to rediscover myself. It has been many years since I was not burdened by diagnoses and pills. Being free of it is wonderful. I've got to examine how I live… I really lost my shit this last month. How many times in my life will I find that I've got to dramatically alter how I live?

Michael is such a good example for me. I think that's a huge deal—to have models in order to figure things out. There are too few of them, it seems. The lack of discipline throughout my life is something that I have to address now.” (August 15, 2017)

Next, we had a phone conversation that first day without Adderall. I choked up a little when I told him I had felt so pressured internally and that I needed to figure out how to live more effectively. I told him that I was distracted by everything around me and didn’t know how I’d get anything done without medication.

Michael asked me if what I was experiencing that week had been seen in the past as mania, which made me feel defensive. Later, I followed up via email and said:

“I feel bad that I was defensive with you today when you asked if what I experienced was like what were once called manic episodes. It felt very different to me now, but you're right that it was seen that way. I know now that it was always within my control. I just didn't know what to do.

Normally, my thoughts are in these layers that flow smoothly together. They can be very different, but they somehow feel right. The problem is when something jars them apart. It's like going off of a track. It requires effort to pull things back together.

I have only recently figured this out. I started understanding it better after I first went to Madison in March. This time, the biggest problem was that I couldn't sleep—not just because of my own thinking but because I was stressed because of SENG. It was a lot of bad timing.

I finished reading the book The Way of the Peaceful Warrior. It was exactly the right way to help me. I will just say thank you.”

Being able to have honest, real conversations with Michael via email and phone helped me make discoveries about myself and my own inner resources.

I complained in my journal and in emails about my inability to focus and stay on task for the next couple of weeks. I started letting myself take the time to daydream when it happened. He helped me refocus on my work as a graduate student, which had been completely stalled while I studied the theory. I wrote to Michael with an update a few days later:

“First of all, I finished all of my dissertation tasks, and I am doing fine without Adderall. I'm so glad that I decided to stop taking it. I feel so much calmer, in my heart. Not like I have jet fuel racing through it all day.” (August 18, 2017)

It’s worth noting that I never said anything to my medication provider about coming off Adderall as I did. I’d been seeing her for less than a year after switching from the nurse practitioner I’d seen for several years before.

No one ever followed up with me to see why I stopped filling my prescriptions. I decided to come off Klonopin over a period of three months and discontinued it completely after presenting at NAGC in November.

There’s so much that I could say about the experience of coming off medication that summer. It was intense and difficult, but also a wonderful experience of waking up to everything around me after being on automatic pilot. In nature, I felt so aware and alive, and I could finally pay attention to the beauty around me after years of being asleep to it all. I hadn’t realized how much Adderall had turned me off to eating, and it was amazing to enjoy food again.

It took more than a year before I stopped constantly questioning whether I should go back on Adderall. Was I being productive enough? Would I ever learn how to pay attention on my own? Could I marshal my own resources?

Three weeks after stopping Adderall, I drove to Wisconsin to visit Michael. I talked with him about the changes I was seeing in myself. It still felt like my mind was overflowing with ideas, and I struggled with emotional regulation. I described this period of time in Overcoming the Self-Stigma of Mental Illness, Part 3.

He recorded the first three psychosynthesis exercises for me on the September 2017 trip to Madison. First, he recorded The Butterfly and The Wave. The next day, he recorded Your Special Place.³ Right away, listening to these exercises helped me.

A few days after I got home from the trip, I wrote, “Personally, I am astonished by the power of the recordings. Things feel much different for me, already.”

I continued listening and developed a daily psychosynthesis practice. This began a routine of asking him to record 2-3 more exercises each time I visited.

Whenever things felt difficult, the first thing I wondered about was whether I needed to return to medication. Again and again in my journals, from 2017 through 2019, I wondered if I’d made the right decision.

“Maybe I do have ADHD, and maybe I should take medication. But perhaps OE fits a little better for me, and maybe I don’t want to be reliant on pills.

I can tell that this is a critical, transformative time in my life. Which is a stressful thing to be so aware of.” (February 13, 2019)

It wasn’t easy to have such an acute awareness of my mental processes, but it’s also something that helped me make changes despite being uncomfortable at times. After stopping medication, I dedicated myself to writing every day in my journal, but it took months to make it a daily practice. I can tell you now that I’ve written in my journal every day since January 2, 2018.

This is a long post, and if there’s interest, I could follow up with more thoughts later. I used edible marijuana to make the transition easier on me, although I’m not sure how much it actually helped. Using edibles could sometimes activate my mind and imagination in ways that caused emotional dysregulation.

I wish, in retrospect, that I had been much gentler with myself during 2017-2018 while readjusting to my body without psych meds. I’ve shared this excerpt in another post, but it’s worth repeating here. It’s from nearly two years after stopping Adderall:

“It’s strange to reflect on the way I took medication for more than 20 years and believed that I had an incurable mental illness that could only be managed with pills. It’s only been 4 years since I began questioning, and stopped treating bipolar disorder. The time since 2017 has been spent remembering—or relearning—who I am without pills. I haven’t been very patient with myself.” (July 9, 2019)

I’m currently living in a completely different experience of reality. It’s been at least four years since I wondered if I should still be taking medication. Over the years, I’ve developed personal mindfulness practices that have changed how my mind works. It was an enormous amount of work to make these changes.

We don’t talk enough about how and when to stop taking psychiatric medication. I’ve had a wide range of experiences with prescribers, and the message I received for decades was that I would always need medication. I’m happy to report that it wasn’t true.

I’m glad I took risks with myself, but it’s important to emphasize that it was indeed risky, considering my history. I’m grateful to have had support through the process, and I couldn’t have done it alone. Please be very careful and be sure the conditions are in place to set yourself up for success if you’re considering a similar path.

1. It was from DSM-IIIR, and the code meant “bipolar disorder, not otherwise specified.”

2. Morelock, M. J. (1995). The profoundly gifted child in family context. [Unpublished doctoral dissertation]. Tufts University.

3. These recordings were made in 2021 and are better for sharing than the originals.