Living With the Excruciating agitation of Akathisia

On November 4, 5 and 6, 2022, an online event was held as part of World Tapering Day. The international event drew attention to the (sometimes serious) problems people encounter while using and tapering psycho-pharmaceuticals such as antidepressants, sleep and sedatives, antipsychotics, anti-epileptics and opioid analgesics. The program included 12 webinars taught by leading researchers, physicians, experiencers, patient advocates and psychiatrists (some of whom have experience with tapering medication themselves). One could learn about safe withdrawal, withdrawal and improving counseling for people who want to stop or reduce their medication. On the youtube channel of World Tapering Day, the webinars can be watched in English or with English subtitles.

Mad in America also contributed to World Tapering Day along with IIPDW by screening the film “Antidepressant Withdrawal Syndrome and its Management” followed by a panel discussion. There was also a contribution from James Moore who interviewed Danish psychologist Anders Sørensen for MIA radio about the insights he has gained from reviewing brain imaging studies and how he uses them to guide his own patients. In addition, there was a contribution from Monique Timmermans, founder of Mad in the Netherlands, about akathisia and how to deal with it. Parts 1 and 2 of this webinar recently came online with English subtitles.

Akathisia is a highly stressful neurological disorder characterized by excruciating restlessness and pain. In addition to the physical uncontrollable urge to move, there is an inner overwhelming sense of terror. The symptoms can be so agonizing that the suffering becomes literally unbearable. Akathisia is mainly caused by prescription drugs. It usually occurs when starting, stopping or changing the dose of a medication, but it can occur at any time during treatment and even months after it has been stopped. Monique herself developed akathisia after tapering off an antipsychotic too quickly. She feels it is important to draw more attention to this condition because too often it is not recognized or acknowledged by doctors while support is one of the most important helping factors in dealing with akathisia.

Part 1:

This interview by Carol Vlugt (WTD) with Monique covers the following topics:

  • What akathisia is
  • What symptoms of akathisia are
  • How it feels for Monique to have akathisia and what impact it has had on her life
  • How akathisia was a motivation for the webazine Mad in the Netherlands

Although akathisia is a heavy subject, Monique manages to put a light tone in her story. This video can also help loved ones and prescribers get more sense of this terrible condition.

Part 2:

To live with akathisia, Monique had to make many lifestyle adjustments. She had to learn to live quietly, lovingly and gently, avoid stress and learn to listen to what the body was telling her. Thanks to the beautiful nature in Brabant, the Netherlands, she got to know herself better than she ever had before. This video shows how Monique learned to deal with akathisia in practice and serves as inspiration and hope for those who are suffering. Time helps. Keep courage!

Other sources:
Akathisia Alliance for Education and Research
Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin (MISSD).

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.