The year 2004 was coming to an end, and U.S. Navy veteran Kathleen Shea was desperate for a good night’s rest. Preferably, a year’s worth and then some. After three years of trying a myriad of medications for insomnia without good results, a psychiatrist prescribed quetiapine (Seroquel®).

This antipsychotic medicine is typically a treatment for schizophrenia, a psychotic disorder that makes it difficult to distinguish between reality and fantasy. Quetiapine can have a sedating effect, which is why some healthcare providers prescribe it as an off-label treatment for insomnia.

“The results were miraculous,” Kathleen wrote in a May 2021 article in Mad in America. “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.” Kathleen had no idea that her miracle drug would soon bring on a nightmare.

The unexpected side effects of antipsychotics

Within two years, sleep was once again elusive. A sleep disorder specialist added two other drugs to the mix, but Kathleen had to quit taking them after losing too much weight.

In 2009, a different psychiatrist upped the quetiapine dosage from 400 milligrams (mg) to 600 mg. This increase in dosage concerned Kathleen. The first psychiatrist she saw specialized in psychopharmacology. He told Kathleen that 400 mg was the highest effective dose for insomnia. “… I thought maybe this new doctor knew something that the other one didn’t, and I just wanted to feel rested,” Kathleen shared with Mad in America. The psychiatrist also prescribed two new drugs, and then very quickly doubled the quetiapine dosage from the original 400 mg prescription to 800 mg.

For eight years, Kathleen took the high dose of quetiapine along with another antipsychotic drug, olanzapine (Zyprexa®), and a sedative, temazepam (Restoril®). In Mad in America, Kathleen wrote that the psychiatrist, “who had clearly overmedicated me,” began to change the prescriptions in 2017. Over a period of four months, she gradually decreased the quetiapine dosage down to 400 mg and slowly cut back on the olanzapine until she was completely off of the drug.

Although the change in medicines didn’t seem to affect her sleep, Kathleen began experiencing a host of other side effects like low blood pressure, an underactive thyroid (hypothyroidism), and supraventricular tachycardia (a dangerously fast heart rate). When an eye exam indicated she might have glaucoma (fluid build-up in the front of the eye that can cause blindness), her doctor decided it was time to stop taking the antipsychotic altogether. By that point, Kathleen had been taking quetiapine for 14 years. Her doctor wanted her completely off of the medicine within two weeks.

From sweet dreams to a nightmare

Kathleen disagreed with her doctor’s recommendation. “Apparently, he had never looked at my history,” she wrote in Mad in America. In the past, Kathleen had been diagnosed with two different types of mental disorders: major depression and generalized anxiety disorder. 

Stopping the medicine proved challenging. In October 2018, Kathleen checked herself into a psychiatric drug withdrawal clinic. On just her second day there, a doctor noticed Kathleen making facial twitches and diagnosed her with tardive dyskinesia.

A side effect of certain antipsychotic medicines, tardive dyskinesia causes involuntary facial and body movements. Someone with tardive dyskinesia is unaware they’re making these gestures. “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,” Kathleen wrote in Mad in America. She now knew that tongue thrusting, lip-smacking, rapid blinking, and grimacing are all signs of tardive dyskinesia.

Her doctor prescribed amantadine, a drug that treats movement disorders like Parkinson’s disease and tardive dyskinesia. When the symptoms persisted, another specialist prescribed high-dose chelated manganese, a supplement for bones and joints that had shown some promise in treating tardive dyskinesia. “After six weeks, my involuntary movements were completely gone. I was overjoyed!” Kathleen wrote in Mad in America.

But on Christmas Day in 2018, Kathleen found herself struggling to walk. Her care team suggested exercises to strengthen her leg muscles, and at the start of 2019, they discharged her from the clinic. On her flight back to Florida, Kathleen’s upper body began to shake uncontrollably. She couldn’t walk, and her thinking was all muddled.

In time, Kathleen learned that she had manganese toxicity or poisoning. “… 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,” she shared in Mad in America.

The tardive dyskinesia symptoms swiftly returned after Kathleen stopped taking the manganese. It would take three months for her thought processes and speech to return to normal. It would be eight months before she could get around without the help of a cane. As Kathleen shared with Mad in America, “It was life-changing to live with these disabilities.” 

Founding the National Organization for Tardive Dyskinesia

While facing these struggles, Kathleen was surprised to find so few resources available to people with tardive dyskinesia. “I couldn’t believe there was no organization [dedicated to TD] because I had read that 500,000 people have some form of tardive dyskinesia in the United States alone,” she shared in an interview published in Health Monitor’s Guide to Living with Tardive Dyskinesia.

In August 2019, Kathleen told a friend that she wanted 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,” she stated in an article for The Mighty.

While in the throes of getting the organization started, Kathleen’s brother began showing signs of tardive dyskinesia after years of taking risperidone (Risperdal®), an antipsychotic that treats irritability due to autism. His symptoms are now under control thanks to a drug called valbenazine (Ingrezza®) that decreases the frequency and severity of involuntary muscle movements.

While valbenazine didn’t help Kathleen’s symptoms, she’s determined that others with tardive dyskinesia know about their treatment options — and know that they’re not alone. She published a book about her experience, “Catastrophic Withdrawal: An Insomniac’s Attempt to Withdraw from Seroquel and How It Dramatically Altered Her Life.”

And in October 2019, she launched the National Organization for Tardive Dyskinesia (NOTD). “NOTD raises awareness of TD with the general public and medical practitioners and provides tools and education for those with TD,” Kathleen said in Mad in America. “One of our long-term goals is that everyone with TD will be aware that we exist as a resource for them.”

Sources

• Shapouri B. We’re thriving even with TD. Health Monitor’s Guide to Living with Tardive Dyskinesia. Winter 2020.

• About us. National Organization for Tardive Dyskinesia.

• Shea K. Mad in America. May 7, 2021.

• Shea K. Going from catastrophic withdraw to launching a nonprofit. The Mighty. July 1, 2021.

Disclaimer

This content is for general informational purposes only and does not necessarily reflect the views and opinions of any organization or individual. The content should not be used as a substitute for professional medical advice, diagnosis, or treatment. Please consult your healthcare provider about any questions you may have regarding a medical condition.