Akathisia is often understood as a motor problem that causes tremors and restless legs brought on by new medication, a dosage change, or withdrawal from medication. It often strikes at lightning speed, leaving little time for people and families to try and figure out what the symptoms mean.

“I’ve seen cases where someone starts the medication, and 24 to 48 hours later, they die a violent death,” says David Healy, a psychiatrist and author of The Antidepressant Era, who has faced some skepticism throughout his career.

No one knows exactly what happens in the brain during akathisia, but it’s generally understood that the condition affects the brain’s dopamine receptors and its system for regulating sensation in the body. Research also suggests that damage to the blood-brain barrier and damage to the growth and development of the nervous tissue in the brain are among other potential factors.

Akathisia is often understood as a motor problem that causes tremors and restless legs... It often strikes at lightning speed, leaving little time for patients and families to try and figure out the meaning of the symptoms.

For most people, it can be treated either by stopping the medication that brought it on or adding another medication, such as a benzodiazepine or beta-blocker. Without treatment — and even sometimes with it — the symptoms can become chronic (generally defined as lasting more than six months).

In 2014, Josh Jensen developed akathisia after taking medication for anxiety and depression. Five years later, at 30, he still lives with the symptoms of constant restlessness. In a YouTube video where he is constantly moving and stuttering, he describes akathisia as “nonstop adrenaline coursing through my entire body… It’s painful, it hurts… to feel like you have to move otherwise you’re gonna go insane.”

He has tried various treatments but has not found anything that alleviates the symptoms.

Akathisia is very rare, and suicidal ideation and death by suicide from akathisia are even rarer. There has not been a definitive study on the prevalence of akathisia, and experts say that rates vary widely — somewhere between 5% and 20%, depending on the trial (and most of the research has involved patients with schizophrenia).

There’s also no data or expert consensus on the exact rate of deaths from akathisia complications. Experts say that the lack of scientific data means that prescribers often don’t warn patients about the risk, if they are even aware themselves, leaving families like the Schiels blindsided.

Raman Marwaha, a psychiatrist at Case Western Reserve University, has studied chronic and acute akathisia. He said that he trains all his residents to be aware of the side effect, but still believes there’s not nearly enough awareness in the medical community.

“When patients talk about this, doctors think it’s just anxiety or ADHD,” he says.