Letting Go of Lithium

“Maybe the journey isn’t so much about becoming anything. Maybe it’s about unbecoming everything that really isn’t you, so you can be who you were meant to be in the first place.” —Paulo Coelho

I never wanted to take psych drugs. I took them because I was desperate to get out of pain, but not the kind of pain most people associate with psych meds. I had headaches, brain fog, and fatigue. I developed asthma and chronic sinus infections. I visited doctor after doctor until I eventually met with a neurologist. Being a brain doctor, he focused on the headaches. Without a diagnosis, he suggested Paxil, considering I was 17 and that I felt sad sometimes. My sister took antidepressants and my family has a lot of mental health issues, so based on that, I was thrown into the same category.

I took the drug as prescribed and felt amazing. I had more confidence, more energy, and I felt like I was on top of the world within two weeks. I started talking fast, coming up with ideas and creative projects and I stopped sleeping. Everything felt good and connected, and I had theories about the world I never could have come up with otherwise. I felt like I had taken a magical pill to cure whatever might have been wrong with me… until I crashed, became paranoid and landed in the hospital.

The magical pill was later explained to me by a doctor to have a side effect of bipolar and that if you have a predisposition for it, then Paxil can trigger the onset of the illness. None of this sat well with me, but coming home from the hospital completely overly medicated and numb, I was in shock, disassociated, and unable to question the doctor’s theory.

On the drive back from the hospital I found out that we had evacuated our home due to black mold. Tragically, if we had found out about the mold a month prior, the treatment for my symptoms would have been drastically different.

The doctor in the hospital who diagnosed me had a great impact on my life for years to come. He explained that the divorce rate for individuals with bipolar was around 90%, that they couldn’t hold down jobs, and that they couldn’t have children depending on their medication. All of the dreams I had for my life, to be a mother, to get married, and to live a stable, healthy life, were shattered. His words fell upon me like a curse, and under his spell of limitations I surrendered my hopes and dreams. Without question, I believed him, and his words gravely influenced my choices and beliefs about myself going forward.

I never felt like I had a choice about the whole situation. I surrendered my power to modern medicine the day I took that first prescribed Paxil. The memories of the hospital are foggy, but I do remember being pinned down and injected with a drug one night after being unable to sleep and incredibly scared. I was yelled at by one of the behavioral techs and then threatened by them. They said if I didn’t go to sleep they would make me. And they did. My hospital experience was dehumanizing and violent. There was no compassion or empathy. I felt like I was being punished because I had done something wrong. The messages I received from medical authorities were that psychosis is bad, bipolar is genetic or can be triggered by medication, and that if I didn’t take medication, I would have to go through a similar experience again, which was terrifying.

The only medication I could tolerate after this was lithium. I was put on Depakote and Zyprexa, which caused major weight gain. I tried Lamictal which caused a rash. Eventually I just took lithium, which had the least amount of side effects. I could tolerate it, which was the goal. While everyone else my age was dating, going to parties and starting to think about college, I was busy talking to my psychiatrist, navigating symptoms, and trying to figure out how to live a bipolar life. One where I managed my moods, made sure I didn’t get too excited or too depressed, and my life began to feel very small.

I made up stories about what happened to me that year. I explained that I had taken a medication and experienced adverse effects, which was true, but I would never tell anyone about my diagnosis or the abuse I experienced inside of the hospital that year. I decided to agree with the medical model, that it was a genetic disease that could be treated with a medication, like diabetes. I knew I didn’t have a problem with mood swings, but surrounded by a family and doctors who all agreed I should take medication, I didn’t feel like I had much choice in the matter. I was only 17. I just wanted to live a normal life and move past this experience as quickly as possible.

I tried my best to live within the parameters of safety the doctors described. No partying. Bedtime routines. Working out. I was motivated by fear. I was afraid of the part of me that lived in the shadows of my psyche. It was dark and wild. It felt powerful and confident, but could not be controlled. Psychosis was something I didn’t want to know more about. It was easier to just believe it to be bad and squash it deep down inside of me. Life became about management, control and doing my best to fit in.

Growing up, my family turned to doctors and science for explanations when it came to any sort of symptom me or my siblings experienced. They began turning to psychiatry when my older sister’s behavior was out of control. Starting at the age of five I can remember being fearful of her. She was three and a half years older than me and experienced fits of rage and mood swings. Typically she would lash out on me. I grew up feeling very unsafe inside of my home, so I spent most of my time in the woods or playing with friends. My sister was diagnosed with bipolar and borderline personality among other things, and based on her behavior, it made sense. She was unpredictable, and I never knew when I might be a victim of her abuse. My parents didn’t know what to do so they turned to psychiatry, and she started taking medications as young as 14.

I learned to go to psychiatry when you express odd behaviors, thoughts, or feelings outside of the normative range. I visited my psychiatrist regularly, and took pills as prescribed. I was a good patient.

I went to college, got a liberal arts degree and went to work. Within the next decade I would go on to become a leasing coordinator at an apartment complex and later a recruiter for a consulting firm. I became a yoga teacher while working in recruiting and aspired to move my career towards health and wellness. Within this time I would go off of lithium twice and experience two manic episodes as a result. I got off due to the recommendation of psychiatrists who thought you could just get off and be done with it. Clearly they didn’t know much about lithium, and neither did I. Each time I experienced a traumatic hospitalization including abuse, forced medication, and witnessing others in their psychological distress. I blocked it out of course, and pretended it never happened. After the second experience, I just decided I’d stay on lithium and I needed to come to terms with this whole bipolar diagnosis. Although I was beginning to experience some physical problems like food allergies, IBS and anxiety, I had to figure out how to be medicated and be okay with it. No more attempts at getting off.

I went back to work, rebuilding my life once again. I saved up to travel, and in 2015, I explored Colombia and Nicaragua, teaching yoga, exploring and meeting inspiring individuals. I brought my Seroquel and my lithium and took it religiously while teaching yoga. At this point I was taking 50 mg of Seroquel and 300 mg of lithium. After my second trip to Nicaragua, I met a woman who shared about her experience with bipolar and how she was able to deal with the trauma in her family line and take ownership of her experience, without medication. She shared stories of Will Hall and Laura Delano, and the book Anatomy of an Epidemic, by Robert Whitaker.

“Oh shit,” I thought to myself. The truth I had felt my whole life was being explained to me with facts to back it up.

A few months later my father came to me apologetically sharing the exact same information. It was then I knew that the story I had believed about my experience, my diagnosis, and the medication were a lie. My world was shattered.

This began a journey of eight years of deconstruction and healing. I was 32 when I started my first taper off of lithium. I was angry. I felt betrayed by my family, psychiatry, and the drug companies. I was angry at the mental health system, and the lies I believed as a result of buying into the bipolar diagnosis. I wanted to find out who I truly was.

Looking back, now medication free at the age of 40, I wish that I would have paused there. I wanted to find out who I truly was, without the medication. I now know that finding yourself has much more to do with healing the trauma than simply getting off medication. I shoved the traumatic experiences of being hospitalized into an identity wrapped in shame. I also had learned to relate to myself based around the doctor/patient model. When I experienced any sort of feeling or symptom, I thought I needed to reach for something outside of myself to fix it. I analyzed myself constantly, monitoring symptoms, whether physical or emotional. I didn’t know what was normal. I didn’t realize that finding myself meant experiencing my joys and passions, living those out and learning to relate to the world from a different mentality. I viewed the world as a victim rather than living from a place of agency and empowerment. My initial taper was fueled by victimhood and a place to put all the blame: psychiatry.

Interestingly enough, few psychiatrists have taken the time to learn the true effects of lithium. However, psychiatrist and author Joanna Moncrieff clearly explains on her website that lithium is a neurotoxin, and that it lows down one’s cognition. It made me numb. It affected my taste buds. Long-term use causes damage to your kidneys and thyroid. And getting off of lithium triggers mania and psychosis due to its effects on the nervous system. The brain is simply attempting to find balance. The fact that getting off of lithium can trigger mania in a person who has never even experienced it was mind blowing to me. It was bone chilling to read over this information and reflect on how this drug affected my life, and the dangers of what would happen to me if I continued to take it as prescribed.

In the spring of 2017, I set out on a mission. I was going to get off of lithium, prove to the world that I didn’t have bipolar, and stop the cycle of trauma that ran in my family. I set up my life the way I thought I should in order to be successful. My parents agreed to help support me during this time, and we all kind of assumed it could be a 6-12 month process. I moved in with my parents and got a part time job. I told a couple of friends about what I was doing, but they didn’t really understand. I never told anyone about having bipolar. I simply explained that I was taking some time for healing and withdrawing from a medication that was no longer helpful. Little did I know the gravity of the journey I was about to embark on.

I started working with an herbalist and going to ecstatic dance circles. I went from 300 to 150 mg in about six weeks without any issues. I went from 150 to 75 mg in another six weeks or so. I browsed resources about safe withdrawal protocols, but continued to do things my way. Despite the herbalist’s encouragement to go slowly through the process, I felt a sense of urgency. I wanted this drug out of my body. I wanted freedom. I was independent, able to travel the world alone without any issues, so I decided this would have to last for a short season of my life. Boy was I wrong!

Since I had trouble cutting the tablets down I just started taking less and less, alternating days that I took the drug. Within a few months, I was down to nothing. Soon, an entire cascade of new symptoms presented themselves. It began with vertigo and evolved into constant anxiety. At that point I could no longer work, believing this was a part of the process. Next, I experienced insomnia. Within a matter of weeks, I had trouble digesting food, which eventually evolved into leaky gut. Next, my hormones became completely out of whack, which led to becoming perimenopausal. I remember that everything inside of me seemed to speed up. I was always hungry. My heart was racing. However, there were no racing thoughts or mood swings.. I now know my body was experiencing extreme fight or flight. The fear was overwhelming. The stomach pain was excruciating and the insomnia, with only an hour or less of sleep each night was exhausting. I sought out help from a chiropractor and an acupuncturist to address the symptoms, failing to acknowledge that my body was craving lithium.

What was supposed to be a healing journey had turned into a nightmare within about five months. I continued to go to dance and practice yoga, focusing on reclaiming my body. I wanted to be able to feel more, so I thought I just needed to learn how to deal with what I was feeling. After reading stories about the chronic illnesses others experienced because of withdrawal, I started to believe that I would be one of those people. As my body fell apart, I continued to seek support from healers. The fear drove me to Christian healers who led me through prayers to break off generational curses. While I experienced some relief, I also became even more paranoid about protecting myself spiritually, fearful of people, places and things that might be inviting in evil spirits. I was a hot mess.

Things had gotten so out of hand I felt like I needed to consult with a doctor, but not a psychiatrist. Instead, I went to a family friend who was a functional medical doctor who was researching and using ketamine for a number of health issues. It was the doctor’s contribution that sent me into psychosis. I agreed to take ketamine with the idea that it would reset my nervous system. I agreed before doing any research, consulting with Will Hall, or talking with any other psychiatric survivors who would likely suggest getting back on a higher dose of lithium. The ketamine sent me into psychosis and I landed back in the hospital.

My body did not fully recover. I sought help through herbs, supplements, and an acupuncturist. I continued to have trouble with my digestion and hormones, but I had to find a way to go back to work. I could not stand living with my parents. After going through this trauma together, even though the intention was support, it began to feel more like control and a power struggle. None of us were equipped to deal with the trauma I was experiencing.

From 2018 to the end of 2019, I went from Austin to Colorado to Oregon to Costa Rica to Nicaragua to West Texas to Austin. I was hospitalized three more times, worked several jobs, and searched for a sense of safety. I tried going back to Oregon and Colorado to start my life over, but my nervous system was stuck in fight or flight, and I couldn’t stay put for long enough to make anything happen. I was literally shaking all the time, unable to focus or be present. In October of 2019 I was hospitalized in Austin after getting hit by a car as a pedestrian. By that time my nervous system had had enough. I had had enough of the gypsy life, and I found a somatic coach to help me process, heal and learn self-regulating skills.

I wish I could say that from that point on, my life got better. In some ways it did. I had more awareness. I knew I could no longer rely on medications or doctors, but I continued to struggle with listening to myself and my body. Working with a somatic coach was extremely helpful, because it was empowering. She taught me tools and helped me work through a lot of my trauma. I felt safe with her because she focused on healing the nervous system and helping her clients step into their true identities. She inspired me to work harder and reclaim my power. I worked with a doctor during 2020 and in the spring of 2021 to deal with my autoimmune symptoms that showed up as brain inflammation, but this was the last time. I did the supplements, hyperbaric chamber, red light therapy, and neurofeedback, and eventually I just quit. I no longer wanted to be a patient. I felt like I had healed enough and it was time to move on with my life.

To summarize the next couple of years of my life, I struggled with self-regulation, and altered states. I became drawn to people, jobs, and places that triggered me. From working for chaotic and intense startup companies to dating intense and volatile personalities, I found ways to play out my victim identity. After an intense experience of withdrawal from Klonopin, what surfaced was deep resentment and anger towards my family.

My somatic coach guided me to ACA, which stands for Adult Children of Alcoholics and Dysfunctional families. I had tried other 12-step groups in the past, but I never felt like I truly belonged with alcoholics or their codependent partners. The behaviors of my altered states of psychosis and my automatic reactions when I was triggered were the same behaviors of adults who experienced abuse and neglect as children. The acting out, the running, the fear and the lack of an internal sense of safety were issues I shared with everyone in the group.

Through all of these experiences, I have learned that if I want to experience the privilege of feeling and expressing an entire range of emotions while living independent from the mental health or medical systems, I must take ownership. Taking responsibility for me requires intentional and conscious awareness around my patterns and behaviors that become automatic in the face of stressful situations. Even though I want to put a time limit on how long I’ll be working on my healing, I now know that this shit takes time and a willingness to try different approaches. But as a wise chiropractor recently taught me, less is more when it comes to the nervous system. Gentle and slow are the best ways to heal.

I am still learning to trust myself. I’m learning how to interpret the signals my body shares with me, sensations and feelings. Slower, and gentler movement practices like restorative yoga and non-linear movement have helped me with this. While I struggle with getting stuck in trauma responses, I’m learning how to move through them. I have experienced the benefits of breathwork to help me navigate my freeze response. As Brené Brown says, “Trust is built in small moments.” With practice, I can continue to rebuild trust in my brain and my body’s ability to heal, protect and guide me.

This year I have focused on doing things that feel like me, to get back in touch with my true self. I completed some neurofeedback this spring, continued with somatic coaching, and worked with a therapist to do Accelerated Resolution Therapy, which is similar to EMDR. I completed an introduction to somatic coaching course and I taught yoga in Wyoming for the summer. I knew I needed time away from the city and everything familiar to gain some clarity. This experience reminded me of my values and the necessary ingredients for my happiness, which includes but is not limited to dancing, live music, dog parks, and ethnic food.

I have since relocated to Colorado where I plan to put down roots, which is a personal challenge, to stay put and invest in community. I continue to participate in ACA, where I’m learning how to build a support network and reach out to others rather than fiercely relying on myself. I achieved my goal of living medication free, and I keep lithium and trazodone available as needed. I also use herbs for sleep and nervous system support. I try to limit the act of reaching for something when I feel anxiety, fear or sadness, focusing on movement, journaling, or connecting with a friend instead.

I now know that the psychosis I was so afraid of at the age of 18 was really my inner child trying to tell me something. I was afraid of her. I’m working on reparenting myself and befriending the scared little girl who never felt safe in her own home growing up. And I’m learning to recognize the behaviors when my inner child does not feel heard, needs to express and needs to feel safe. Removing the shame, allowing myself to be seen and learning to have fun again are all a part of healing my inner child and ultimately moving from being the victim to living as the hero of my story.

The healing journey is less about being free from medication and psychiatry and more about connecting with myself now. I am grateful for the freedom to feel. I understand that underneath the feelings there are needs and messages that I can choose to listen to or choose to ignore. I have learned to do something that makes me happy when I start to feel stuck in sadness. It is a privilege to feel the pain and move through it. I am free to cry and grieve without fear of depression. I get to experience joy and pleasure without fear of mania. When I am experiencing the deepest pain, I remind myself that this is what I worked for: the freedom to feel.

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