Erik Schneider survived the unspeakable. Instead of a carefree childhood filled with love, security, and happy memories his was shattered by rape.

Born female and starting when he was 11, Schneider was repeatedly raped by his older brother and later by a stranger. But worse than that, Schneider says, was the terror of growing up in a Fundamentalist Christian household. He remembers being told repeatedly that he’d burn forever in the “Lake of Fire without the mercy of dying” if he wasn’t saved.

erik and cousin playing chess

Scheider as a girl playing chess with her cousin in 1972.

When the trauma caught up with him, he was 19 years old and questioning his gender. Schneider, who uses the pronons they/them now, says he felt male from an early age but kept dismissing those thoughts. Because of the way he was being raised, Schneider understood being a girl as punishment for some unknown misdeed, his brother’s assault as a kind of gender policing. He must be a girl, he reasoned, because only girls got raped.

A psychiatrist prescribed antidepressant medication because Schneider felt bleak and depressed. When he started to self-harm and became suicidal, he was sent to a psychiatric institution. But compared with the misery at home, his time in the psych ward felt like a vacation, he says. Fire and brimstone may have defined his troubled childhood, but it also fueled his escape.

Two months later when he was released from the hospital, he was off all medication. Eventually, he made his way to the West Coast where he went to college and continued questioning his gender. In 1997, he decided to transition. Maybe living as a male could help him leave the past behind?

But of course, the hormones didn’t solve all of his problems. Transitioning was difficult and Zyprexa was prescribed along with a variety of antidepressants. Healing from the trauma of childhood sexual abuse can be complex and slow.

In spite of his painful past, Schneider persevered and earned an advanced degree from UC Berkeley (in rhetoric) which led to a promising career in academia. Sadly, all of that came to a halt in 2010 as unresolved childhood trauma continued to plague him and he struggled with panic attacks. In 2012, he noticed the first signs of tardive dyskinesia—twitching in his face. By then, he had become a master at researching his symptoms and finding help. He wouldn’t let another setback keep him down.

Schneider may have been taught in childhood that he had to be saved but today it’s Schneider who is saving himself.

Here, in Schneider’s words, is his story.

Finding His Way Out Through Music

I’m a survivor of childhood sexual abuse and developed post-traumatic stress disorder (PTSD) as a result. In 1981, at the age of 19, I sought help for my mental health. A psychiatrist put me on medication—first tricyclics, which gave me a rapid heartbeat (a condition known as tachycardia), and antidepressants. Depression ran in my dad’s family. I felt suicidal. I didn’t want to speak to anyone. I didn’t want to go anywhere. I wanted to die. That was a very, very hard time.

Erik Schneider playing guitar in his band

Prior to transitioning, Erik (with short, blonde hair) plays the guitar with his girlfriend Lisa, in their band, Infamous Menagerie.

A year later, due to extreme suicidality and self-injuring, my psychiatrist recommended I go to a psychiatric institution. I was happy to be out of my family’s house, away from the trauma. I left after two months, no longer on medication, and did odd jobs for a year.

Music was my passion back then. I grew up in Marietta, Georgia, a suburb of Atlanta. The Punk Rock scene was huge at that time, and I started going to Atlanta to hear live music. That’s how I met Lisa, who became my girlfriend. I had come out as gay to myself while still in high school but never told my parents.

We met in 1983 and fell in love. She was 19. I was a few years older. We loved bands like Lady Bunny and The Now Explosion and went to drag shows, too. (RuPaul performed a lot in Atlanta, too.) We held hands in public places which felt a little risky. I brought her home occasionally which is how it became know that I was gay. Hanging out with Lisa showed me how people who weren’t Christian Fundamentalists lived and helped me feel more “normal”. We also started a band together, Infamous Menagerie, and remain friends to this day.

California Dreaming

From 1982 to 1997 I took no medication. I didn’t start taking meds again until I went to San Francisco for graduate school at UC Berkeley in the fall of 1996. The next summer I started transitioning and had a series of somewhat disastrous love affairs. My (bad) habit of falling in love with women who were involved with other people led me to therapy for counseling. In January 1998, the therapist suggested I meds.

I was skeptical to go back on medication but I was in such bad shape I thought that if I didn’t, I’d get worse. My doctor recommended Paxil, which I took for several months. My main problem was the intrusive thoughts about the people around me. The thoughts were distressing and caused suicidal ideation so I tried different medications.

Erik graduation from Berkeley

In 2007 Erik finished his graduate program with a degree from UC Berkeley

I’ve been on a selective serotonin reuptake inhibitor (SSRI) almost continuously since 1998 but sometime before July of 1999 the doctor put me on Zyprexa and diagnosed me with major depression with psychotic features.

I made the mistake of describing the intrusive thoughts as “voices,” but they were never auditory hallucinations. I tried to be clear that I wasn’t hallucinating—but the doctor never heard me. To this day I’m not sure where psychiatry draws the line between psychosis and obsessive thoughts. I wish I had never called them voices because maybe he wouldn’t have been so quick to put me on antipsychotics. I suppose I’ll never know.

For a short while, Zyprexa was marketed together with Prozac.  Zyprexa was brand new then and supposed to counter the anti-depressive qualities of Prozac but instead, it really zoned me out. It stopped all the thoughts and I was somewhat zombified for a few years. During that time it was difficult to do schoolwork but I was lucky the graduate program was supportive and waited for me. I was never warned that tardive dyskinesia was a possible side effect of  Zyprexa and my psychiatrist never screened me for movement disorders either.

Getting Off Zyprexa: When Tapering Goes Wrong

In 2012 I read the book Mad In America. It really scared me so I insisted on being taken off Zyprexa. I hadn’t been dealing with intrusive thoughts for a while and although I’d been experiencing some minor twitching while still taking Zyprexa, I didn’t really notice the signs of TD until after it was out of my system.

The ticks and twitches were happening in my face and I developed a vision condition called nystagmus which causes the eyes to make repetitive, uncontrolled movements and results in poor vision and depth perception issues. Since all the reading I had done linked TD to the tongue and facial grimacing I didn’t think TD was impacting me.

Unfortunately, I was not properly weaned from Zyprexa. Since I was on a “low” dose (2.5 mg daily), my psychiatrist recommended a one-month taper which I extended by an extra month but that was still way too fast. It’s sad to say that many doctors are unaware of the greater safety of gradual dosage reduction and often don’t know what to do if things go wrong. Length of time on medication is a major factor. The thinking around protracted discontinuation syndrome (essentially persistent withdrawal symptoms for months after a substance has been discontinued) basically states that the longer you’re on the medication, the slower the taper should be.1 Knowledge about tapering from antipsychotics is evolving but some experts recommend a 10% decrease in the dose over a period of several months.2

On August 10, 2012, I took my last dose of Zyprexa. The first four days, I barely slept, which is not like me. I felt wonderful. But on day four, I started worrying that maybe I might be “getting” bipolar—as it also runs in my family. I remember being worried I had done something supremely stupid and that was the day I crashed.

Headed out of a store near my home in San Francisco, I noticed I was sweating profusely and felt like vomiting. I wasn’t sure I’d make it home. I was really weak and felt like my body wasn’t going to get me there. I made it home—but barely—and didn’t leave again for several days. After that, I could barely eat or move. I was having hot and cold flashes and always felt incredibly nauseous. That was the main reason I couldn’t eat—but I didn’t throw up. I had a terrible headache. The tardive dyskinesia symptoms themselves got a lot worse—full-body twitches that resembled knocking.

I saw the doctor the next month and filled him in on all my symptoms. And all I really remember him saying was “Are you hearing voices?” I told him, “No” for the millionth time and he said, “Great. See me in December.”  He clearly hadn’t heard me. He was just focused on knowing if the psychotic symptoms were back. He wasn’t concerned about the weight loss which had been significant but I figured I’d talk to my primary doctor if the problem persisted.

That was the day my trust in the psychiatrist—and psychiatry in general—eroded.

When I saw him again in December I had lost nearly 30 pounds. I still didn’t have an appetite and got frequent headaches. I didn’t know then that GI-stuff is often associated with TD as well. It had been close to five months of hot flashes, cold flashes, extreme fatigue, and sleeping a lot. I felt physically wrecked but he said he didn’t think it had to do with coming off Zyprexa. Instead, he told me about another patient who recently came off antipsychotics. His GI symptoms turned out to be a spinal tumor. What??? Before I left he cut my dose of Prozac (I still take that today) to help with the intestinal cramping. I ended up doing a CT scan. No tumor.

From 2012 to 2013, I barely left my house—and in that year, my neighborhood really changed. It went from Latin gangs to start-up tech companies. When I was finally better enough to go out, it was incredibly disorienting. I developed painful muscle spasms in my shoulder, neck, bridge of my nose, and around my eyes. I also developed a strong sensitivity to light which makes driving nearly impossible.

In 2014, I started researching my symptoms on the website of the Tardive Dystonia Foundation. When I read the description of facio-maxillary dystonia (face and jaw spasm, clenching teeth and shoulders), I knew that’s what I had. I told my general practitioner and he sent me to a neurologist.

The neurologist recommended Botox injections to help with the TD and taking high doses of vitamin B6. 3,4 Vitamin B6 has been shown in some studies to lessen spasms. Today I take 195 mg but have been told you can go as high as 1500 mg.

I’ve long considered the impact of starting hormone therapy while taking medication for depression but very little is known about their relationship to the development of movement disorders. My gut feeling is that the testosterone did not contribute to my TD. I know a lot of people who have transitioned and been on and off psych meds without this effect.

Managing TD with Self-Care and Support Groups

I have a lot of grief and anger around TD. While I can live my life more easily now than 5 years ago, I mourn what I was once able to do. I used to go backpacking several times a year, but I can’t do that anymore. As a scholar, I can’t read as much as I used to either. Audiobooks are great but not many academic texts are available in this format.

I feel like a lot of my life has been taken from me, like I became a senior citizen about 30 years early. Going for a long walk pretty much guarantees I won’t go anywhere for the next two or three days, it taxes my body so much.

It frustrating there are so few avenues for redress. Suing a pharmaceutical company is next to impossible and drawing attention to TD is an uphill battle since the majority of people suffering from it are mental health patients. So many of us have been hurt and I have a lot of skepticism around how science functions in a capitalist system. The motivation to make money undermines open scientific trade practices. Science should not be kept hidden.

Thankfully I’ve found social support, good advice, and other help through many online groups. The Positive Resource Center, a legal resource for trans people, helped me get disability back when I was still teaching and the best tapering advice I could find came from an online forum Surviving Antidepressants.

Having intimate relationships continues to be difficult but that’s mostly due to trauma in my past. Today, I’m okay being a dedicated gender-queer single person. I enjoy meditation and being in nature so I try to get out of the city as much as possible. Writing and music still interest me and I’m learning more about computer programming now.

If we could find a way to organize around TD we might be able to get the problems associated with drug-induced movement disorders addressed. My hope for the future is for people in mental distress to get better treatments.

For the time being, getting the word out through personal stories about the dangers of medication seems like an important step toward a clearer and broader understanding of TD and maybe even meaningful change.

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Last Updated: May 20, 2021