What is akathisia?
Akathisia is an extremely distressing neuropsychiatric syndrome characterized by severe agitation, inability to remain still, and an overwhelming sense of terror. It is primarily a medication side effect. People with this condition can quickly become suicidal and even homicidal. Akathisia is far more common than has been reported in the past and remains dangerously under-diagnosed and under-reported today.
“There are two sides to akathisia. One is an outer, visible restlessness that you can observe, but the other, much more important one, is an extraordinary state of terror inside a person.” Joseph Glenmullen, MD
Please see the “About Akathisia” section for additional general information. There are also sub tabs specifically for Patients, Family and Friends, and Researchers. If you are a clinician, please see our “For Clinicians” section. It contains true stories that illustrate the importance of diagnosing akathisia correctly as well as information to help you do so.
Who are we?
The “Akathisia Alliance for Education and Research” is a nonprofit organization formed by people who have experienced it. Our group includes biochemists, psychologists, nurses, attorneys, business owners, and others who have survived akathisia, suicidality, and devastating personal losses due, in part, to a lack of awareness by medical professionals. We have come together from all walks of life to battle these things we all have in common, so we can help prevent them from happening to others.
How can we help?
- Our group includes medical professionals who have experienced akathisia and its accompanying suicidality. As such, they are uniquely positioned to act as a liaison between patients, clinicians, and researchers.
- We have a database of patients who have or have had akathisia and are willing to participate in research studies that do not include drug trials.
- Many of our members have spent years battling suicidality while poring over medical journals and brainstorming in support groups. Because clinicians and researchers who have never experienced akathisia are at a significant disadvantage, we will be reporting the results of our informal research in a Journal of Akathisia. We hope this journal will provide an environment for collaboration between neurology and psychiatry and a foundation for future research.
Coming soon - Journal of Akathisia
The Akathisia Alliance will be publishing a Journal of Akathisia with the goal of facilitating research to determine its pathophysiology, uncover a genetic predisposition, and identify potential treatments. It will contain case reports, reviews of literature, and informal data obtained through patient questionnaires and diagnostic studies.
For patients - "Patient Care Information" cards
If you have or have had akathisia, please visit our “For Patients” section to get a “Patient Care Information” card. With the cooperation of your health care provider, it may help prevent you from being misdiagnosed, involuntarily hospitalized, and/or force drugged with medications that can make akathisia worse, or cause it to recur.