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Going From a Catastrophic Withdrawal to Launching a Nonprofit

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On July 1, 2018, two weeks after starting to withdraw from 14 years of Seroquel use for insomnia, a close friend asked me why I was moving my mouth, lips and tongue in a strange way. I had not noticed it, but I thought it may be related to the burning sensation in the roof of my mouth and my tongue. The burning had just started in the past few days. I saw my VA doctor in August 2018 and he did not notice my unusual movements. Because I was suffering so much anxiety from the withdrawal, I never considered that there could be a connection between my burning mouth and my tongue that continually rolled around in my mouth.

Fast forward to October 2018. I saw a new psychiatrist. After I sat down, he looked at me and asked, “How long have you been that way?” I was puzzled at what he could be referring to. He said, “You have tardive dyskinesia.” I had vaguely heard of it happening to patients, but not those took who took Seroquel – only those who took antipsychotics back in the 1950s. My psychiatrist had never mentioned it. I looked at him, in disbelief, and said, “Are you sure it’s not anxiety?” He replied that it wasn’t. I was given an AIMS (Abnormal Involuntary Movement Scale) test and was then prescribed amantadine. His nurse said that it will start to work quickly (within a few days) if it is going to work. I stayed on it for three weeks, at the highest dose, with no success.

I had previously seen in a 2008 book entitled “Supplement Your Prescription: What Your Doctor Doesn’t Know about Nutrition,” written by Hyla Cass, M.D. mentioning the use of high-dose manganese for prevention or reversal of tardive dyskinesia (TD). I also saw it on a University of Michigan holistic webpage as a possible treatment for TD (this webpage has been taken down). A naturopathic doctor then prescribed 32mg of high-dose chelated manganese. In six weeks, my TD was gone. I was over the moon. In seven weeks, I began having trouble walking, intermittently. Soon it became 24 hours a day and I began displaying severe upper body tremors. I stopped the manganese. I should have had someone take me to an emergency room, but I live alone and was not thinking clearly. A family member made me an appointment with one of the few neurologists near my home, but it was a wait of eight days to see him. The upper body tremors had stopped by then. I remember how very slowly I made my way, struggling with a cane in my right hand, across the waiting room. It felt like an eternity. When I got to the exam room, my mother following me, he confirmed my original diagnosis of orofacial tardive dyskinesia, and observed ataxia (an impaired coordination of the limbs, in my case the legs) which can present as a result of manganese poisoning. One of the cruel things about manganism (the medical term for manganese poisoning or toxicity) is that new symptoms can show up months after the exposure has stopped. This happened to me, also. A couple months after my last dose of manganese (December 31, 2018), I was still walking with a cane. I would find myself stuttering over a word here and there; soon it also became all day, every day. That lasted for three months. It was over eight months, total, before I could walk completely without a cane.

Soon, I had begun treatment with a new female psychiatrist. She was very compassionate. She prescribed Ingrezza® for my orofacial tardive dyskinesia. I began to search Facebook for others’ experiences on this VMAT-2 inhibitor, FDA approved for TD in 2017. I joined a couple Facebook groups devoted to TD in the beginning of July 2019. I was warmly welcomed into these groups by people who had TD or were caregivers for those with TD. I also saw stories from some mothers of children or teens with TD. I found many supportive new online acquaintances and was shocked by some of their stories of living with TD. Some of these people were truly suffering. I quickly discovered that there was no national organization to represent those with tardive dyskinesia. The National Organization for Rare Disorders (NORD) was the only organization I could find that had information regarding tardive dyskinesia at that time without bias. However, they didn’t go into depth about the disorder. I soon began researching on the National Library of Medicine’s PubMed database for articles about TD. A substantial number of the articles that I read estimated the number of people with some form of TD in the U.S. at 500,000 or greater (it is now approaching 600,000). To me, this was hardly a rare disorder. How could there not be an organization devoted to TD with so many afflicted? And this does not take into account those with TD in the rest of the world.

One weekend in August I told my good friend that I wanted to do something to make a difference in the world. A few days later, I woke up with a strong feeling that I was meant to start a nonprofit organization for TD. Was God calling me to start a nonprofit to serve those with TD? I had a strong feeling He was. That day I went online and researched how to start a nonprofit. The paperwork alone to obtain IRS approval seemed like a daunting task. I came across a law firm in Orlando, Florida, devoted to helping establish nonprofit organizations. A few days later, I emailed them to setup a consultation. How little I knew then about what starting a nonprofit entailed. In mid-August 2019 I had a phone consultation with a young female nonprofit attorney. She seemed like a perfect fit to work with and seemed wise beyond her years. Upon hearing my vision for a TD nonprofit, she was eager to assist me in this venture. I appreciated her excitement for me and my mission. At the end of the consultation, I retained her services. I shared in a couple of Facebook TD groups my heartfelt plan to start a TD nonprofit charity. My vision received a positive response from many of the groups’ members. I began thanking God for putting this on my heart and giving me a new purpose in life.

While awaiting nonprofit charity status by the IRS, my autistic brother began developing obvious symptoms of TD, most likely from risperidone. He is doing well now that he has been prescribed Ingrezza; it began working in a couple weeks for him. Ingrezza and Austedo® haven’t helped me after months of trying each at the highest dose, but I’m still a firm believer in their efficacy.
On October 30, 2020, the National Organization for Tardive Dyskinesia (NOTD) celebrated our first anniversary as a 501(c)(3) nonprofit charity. Though we are U.S.-based, we often hear from people around the world. For resources and tools to help those with TD, please visit our website,

TD is just a part of my journey; to read the rest of my story, please find my recently published book, “Catastrophic Withdrawal: An Insomniac’s Attempt to Withdraw from Seroquel and How It Dramatically Altered Her Life, at or

Photo credit: Moussa81/Getty Images

Originally published: July 1, 2021
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