ROCHESTER, Minn. — Friday, September 20, was the first International Akathisia Awareness Day.
Akathisia, a side effect that can cause suicide, is largely unknown even among doctors. After ruling out dates claimed by other illnesses, the organizers chose a date in September to raise awareness about the condition in order to connect the cause of drug-induced suicide with Suicide Prevention Awareness Month.
“September is suicide prevention month and while akathisia-induced deaths are not prompted by depression, if we are unequivocally committed to saving lives, we must increase the public’s knowledge of akathisia,” said Wendy Dolin, Founder of the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, which organized the declaration.
Akathisia, a derivative of the Greek words for "inability to sit," is a rare but deadly adverse drug effect associated with over 100 common medications in numerous classes, including antidepressants, malaria drugs, antipsychotics, smoking cessation drugs, acne medications and anti-seizure drugs.
The side effect, noted in the medical literature for decades, is believed to stem from a depletion of dopamine combined with other unintended or "downstream" effects on neurotransmitter systems associated with mood and memory. It creates an internal restlessness and intense agitation, one that can materialize as a sudden compulsion to move the legs or pace.
People who experience akathisia report feelings of wanting to crawl out of their own skin, and sudden uncharacteristic thoughts of taking their own lives simply to escape the torment. Because akathisia sometimes accompanies pills taken for depression, itself a risk factor for suicide, it likely often goes undiagnosed. Akathisia is believed by many clinicians to be the syndrome responsible for the black box warning of the risk of suicidal thinking and acts on several classes of medications.
Dolin founded MISSD in 2010 after her husband, Stewart Dolin, took his life by leaping in front of an elevated train in Chicago. He had begun experiencing sudden and intense feelings of sleeplessness and agitation shortly after being prescribed a generic form of the medication Paxil for anxiety. Wendy Dolin sued the manufacturers, winning a verdict that was later overturned on appeal. In her trial, she introduced evidence showing that the earliest studies of the drugs artificially inflated the appearance of suicidality in persons on placebos, making the test drug appear safer by comparison.
"One of the things that came up in my trial was over 25 people over the age of 30 took their life in the Paxil drug trials," says Dolin, "and about 40 people became akathisic and they never reported it."
Dolin stresses that raising awareness of akathisia is not anti-medication.
"MISSD is not anti-drug or anti-doctors. What I think has happened is that the pharmaceutical companies have never been willing to talk about akathisia, because there's never a good result. They've mislabeled it many times. ... The drug companies haven't wanted to disclose akathisia, and I believe the doctors have kind of been in the dark in the same way consumers are."
Dolin says the signs are all there that the public and medical professionals are willing to learn more. In July, she was invited to speak about akathisia before the Royal College of Pharmacists.