By Kathleen A. Shea, MA, MPH
At first, it was a love story. It was the winter of 2004. After more than three years of getting a minuscule amount of broken sleep every night and trying every insomnia remedy possible – from herbal and nutritional supplements to Ayurvedic medicine to prescription drugs known to be sedating, such as the antidepressant Remeron (mirtazapine) – a VA psychiatrist decided to prescribe me, off-label, the atypical antipsychotic Seroquel (quetiapine). A specialist in psychopharmacology, he quickly titrated me up to 400 mg and informed me that this was the highest effective dose for insomnia. The results were miraculous. Sleep became easy; I slept a solid eight hours every night and I thought that would be the simple, joyful end of my quest for sleep.
As with most love stories, the magic did not last. The Seroquel became less effective and by 2006, I was also seeking the help of a civilian sleep-disorders specialist. He added more drugs to my nightly Seroquel, prescribing Xyrem off-label, which is a highly-controlled chemical cousin of the date-rape drug GHB. Then my sleep disorders specialist added 20 mg of Ambien to the mix. I dutifully followed my doctors’ orders. But after eight months with no appetite and a substantial weight loss off my already slim frame, both doctors decided it would be in my best interest to discontinue Xyrem.
By 2009, I had a new VA psychiatrist and was taking a new sleep cocktail consisting of 600 mg of Seroquel, 20 mg of Zyprexa (olanzapine), and 30 mg Restoril (temazepam). Though I had remembered what my previous psychiatrist had told me about not taking above 400 mg for insomnia, I thought maybe this new doctor knew something that the other one didn’t, and I just wanted to feel rested. Soon after, he prescribed 800 mg of Seroquel in addition to the other drugs.
Fast forward eight years to the summer of 2017. My VA doctor, who had clearly overmedicated me, finally realized that fact. He had me reduce my dose of Seroquel from 800 mg to 400 mg over four months’ time. Luckily, I didn’t experience any difficulties or worsening of my broken sleep patterns. Recognizing that I was still overmedicated, this doctor then wanted me to withdraw from Zyprexa over two months. I managed to do it in four. I had no problems whatsoever and didn’t notice any worsening of my non-restorative sleep.
By this time, however, I’d acquired a myriad of side-effects I’d learned were brought on by Seroquel, including hypothyroidism, supraventricular tachycardia (SVT), and low blood pressure, all of which needed to be controlled by other medications. In June 2018, I mentioned to my psychiatrist that my optical nerve had a suspicious appearance suggesting glaucoma. Since glaucoma is another potential side effect of Seroquel use, this was the last straw for him. He said, “You have no psychiatric illness. You just can’t sleep.” He wanted me to cease my 14-year experience with Seroquel within two weeks’ time.
Apparently, he had never looked at my history. Years ago, I had battled Major Depressive Disorder (MDD) and Generalized Anxiety Disorder (GAD). Though I did not follow his advice, a cascade of events happened to fundamentally change my life forever.
What my doctor told me would be a quick, two-week affair turned into a 14-month nightmare that I chronicled in my recently published book, Catastrophic Withdrawal: An Insomniac’s Attempt to Withdraw from Seroquel and How It Dramatically Altered Her Life.
During my harrowing journey, I ended up spending three months in a psychiatric drug withdrawal clinic with a holistic slant. They claimed they could help me completely withdraw from Seroquel. The clinic was extremely expensive. But with no other options in sight, I decided to attempt their eight-week program. I ended up extending my stay to 11 weeks, and yet, I left the clinic so much worse than when I got there. And I was nowhere near withdrawn from the drug, still taking a 200 mg dose. I was considered one of the most difficult cases of attempted withdrawal from any psychotropic drug they had ever seen.
At the beginning of my stay, the medical director, a psychiatrist, was concerned and seemed compassionate. But by my second month there, he and the entire staff did not believe I was on Seroquel just for insomnia. They thought I must certainly have severe mental illness. What else could explain the litany of bizarre effects I experienced during my attempted withdrawal, from partial paralysis to time distortion to days lost to amnesia? I couldn’t do the simplest things to pass the time. I was so cognitively impaired that I did not know how to take a shower, I had no understanding of television, and couldn’t comprehend pamphlets or books.
One good thing (if you can call it that) did happen at that clinic. The day after I got there, in October 2018, I was diagnosed with orofacial tardive dyskinesia (TD). I thought back to July 1, at a family birthday celebration, when a very close friend asked me why my mouth, especially my lips and tongue, were moving involuntarily in a strange way that I wasn’t aware of. These movements occurred two weeks after I began my descent from 400 mg of Seroquel, though I didn’t make the connection at the time. I had no idea how important TD would become to what I see now as my purpose in life.
Initially, the clinic psychiatrist prescribed amantadine to treat my TD, stating that if it worked, it would work quickly, with a low side-effect profile. But after three weeks on it, my TD persisted, so the naturopathic doctor prescribed high-dose chelated manganese, an alternative treatment based on some small studies conducted decades ago. After six weeks, my involuntary movements were completely gone. I was overjoyed! But a week later, on Christmas Day 2018, something even more frightening took their place. I began to have intermittent difficulties with walking. I had only a week left at the clinic. At the time, no one at the clinic realized that manganese taken at a high dose for TD could accumulate in the movement center of the brain, causing Parkinson’s-like tremors and disturbances with gait and other neurological effects. The medical team just told me I needed leg-strengthening exercises.
On New Year’s Eve, I walked out of the clinic on my own two feet, normally. I was dependent on a reliable friend who knew it would be impossible for me to try to navigate the long trip home from Arizona back home to Florida when I was still having difficulty following a simple conversation and had only slept about four hours total in three weeks due to my still-present insomnia. At this point, I wouldn’t have understood how to traverse an airport by myself. There was no way I would have been able to manage my luggage or get through security or make it to the right gate. My friend had made all the arrangements – from booking our flight to renting and driving a car.
My friend had planned every part of our itinerary but had no way of knowing that at the first rest stop after leaving the clinic I would be completely unable to walk without assistance. Thankfully, he was a strong, 6’3” man who could manage the situation rather than my 80-year-old mother, who had initially planned to make the trip with me.
After we made it to the plane, we settled into the roomy first row of seats of the coach section. Thankfully, he thought of this little detail because we are both taller than the average traveler. But now the extra space was crucial because I had intermittent upper-body tremors. After I got settled in for the flight, though my cognition was severely impaired, I picked up and looked at a test of my neurotransmitters that the clinic had conducted. A section heading, “Low Dopamine,” jumped out at me. My eyes were drawn to the last sentence of the paragraph below, which stated, “Manganese excess may … produce Parkinson’s-like symptoms.” That morning, before leaving the clinic, I took my last dose of manganese. Several days after stopping it, my involuntary orofacial movements fully returned.
It took three months after returning home from the clinic for my cognition to return. It happened suddenly over a week. My ability to speak without stuttering lasted about three months as well. However, I walked with a cane for eight months. And the TD continued. It was life-changing to live with these disabilities.
One weekend in early 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 the first national nonprofit organization for TD. Was God calling me to do this? I somehow knew that 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, devoted to helping establish nonprofit organizations. In mid-August 2019, I had a phone consultation with a young nonprofit attorney. She seemed like a perfect fit to work with. Upon hearing my vision for a TD nonprofit charity, she was eager to assist me in this venture and I retained her services. I also shared my heartfelt plan to start a TD nonprofit charity on a couple of Facebook TD groups. My vision received a positive response from many of the groups’ members. I began thanking God for placing this idea on my heart and giving me a new purpose in life.
While I was awaiting my nonprofit charity status from the IRS, my brother, who is autistic, began developing obvious symptoms of TD as well, most likely from the risperidone he had been taking for many years. He is doing well now that he has been prescribed one of the VMAT-2 inhibitors for TD, Ingrezza, which began working within a couple of weeks. Ingrezza, and the other FDA-approved medication for TD, Austedo, haven’t helped me, though – even after months of trying each at the highest dose. But I’m still a firm believer in their efficacy for some people.
Finally, on October 30, 2019, the National Organization for Tardive Dyskinesia (NOTD) was born. We celebrated our first anniversary as a 501(c)(3) nonprofit last fall. NOTD raises awareness of TD with the general public and medical practitioners and provides tools and education for those with TD. One of our long-term goals is that everyone with TD will be aware that we exist as a resource for them. Though we are U.S.-based, we hear from people around the world. Please visit our website, www.TDHelp.org, and our Facebook page: www.facebook.com/TDHelp.
This article First appeared in Made In America
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