“If a patient taking an antidepressant complains of worsening depression and suicidal thoughts, a prescriber is likely to increase the patient’s dose to continue treating depression, which only exacerbates the akathisia.”
The article that follows was written by Avichai Scher (right) for Elemental, an online publication about health and well-being. Avichai, a former dancer and choreographer, is now a freelance journalist who has written for the New York Times and NBC News.
I have not removed or re-written any part of Avichai’s article. However, I have added some photos and hyperlinks, anglicised some of the spellings, italicised the dialogue and taken the liberty of referring to Joe Schiel and Stewart Dolin by their first names.
With his retirement approaching, Joe Schiel (left) was experiencing heightened levels of anxiety and stress. His doctor prescribed a generic version of Lexapro (Escitalopram), an antidepressant in a group of drugs called selective serotonin reuptake inhibitors (SSRI), to ease a difficult transition. Nearly a month later, he jumped off a hotel’s fourth-floor balcony.
Stewart Dolin (right) started taking Paroxetine, a generic version of the SSRI Paxil (Seroxat), following the stress of increased responsibilities at his job. Just six days later, he leaped in front of a moving train.
The deaths of Stewart and Joe, who were both in their fifties, stunned their families. Stewart had no history of mental illness. Joe had an episode of sharply increased anxiety many years earlier. How could they have died by suicide so quickly following a commonly prescribed treatment for a relatively minor mental-health issue?
For both men, the brief period between starting the medication and their death was extremely suspicious. “It wasn’t the Joe I knew,” says Janet Schiel, Joe’s widow. “Just all of a sudden, he was a different person.” Almost immediately after Joe began taking the medication, Janet noticed that her husband became paranoid and restless. He expressed extreme distrust of people he had been close to for years, convinced they were plotting to destroy him somehow. He also became extremely socially withdrawn.
“He would tell me, ‘I don’t know what to say to people, I can’t have a conversation.’ In over 30 years together, I never heard that,” she says.
Janet didn’t know this at the time (and it was never officially diagnosed by his doctor), but after Joe’s death she was told that his symptoms were a classic presentation of acute akathisia, a rare and little-known side effect of medication, most commonly antipsychotics and certain antidepressants, characterized by extreme inner restlessness. For some, the turmoil is so strong it quickly leads to death by suicide.
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 (left), a psychiatrist and author of The Antidepressant Era, who has faced some scepticism 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 (right) 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 “non-stop adrenalin 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 (left), 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.
People taking antidepressants face another challenge in dealing with akathisia — stigma. Some providers and families might assume, or at least wonder, if someone who needed an antidepressant was already inclined toward suicide.
Peter Kramer, a psychiatrist and the author of many influential books, including Listening to Prozac (right), says that akathisia is usually discussed in the context of antidepressants, and that is harmful. Even though drugs in the SSRI class of antidepressants like Lexapro and Paxil are more commonly associated with the condition, many other classes of drugs have been linked to it as well.
“I do see some residue of stigma when only psychiatric drugs have these warnings,” he says. “It’s more of a scandal in psychiatry than neurology, even though drugs for seizures and other conditions can cause akathisia.”
Dr Kramer (left) says that akathisia can be understood as “brain poisoning,” but says that term can apply to other drugs as well. “When you begin to treat patients’ high blood pressure, do you warn them that they may risk brain poisoning? If not, then perhaps the usage in regard to psychotherapeutic remedies is inflammatory and stigmatising.”
Dr Healy points out that the stigma of antidepressants can complicate akathisia treatment. If a patient taking an antidepressant complains of worsening depression and suicidal thoughts, a prescriber is likely to increase the patient’s dose to continue treating depression, which only exacerbates the akathisia.
Stewart Dolin had lunch with a client’s accountant an hour before he died. “He had a chicken salad with dressing on the side and an iced tea,” says his widow, Wendy Dolin (right). “They made an appointment to meet again, too.”
Stewart and Wendy had been together for 42 years. He had never struggled with depression and he left no note. Wendy was at a loss to understand his death.
She recalls his odd behaviour in the last few days before his death. “He was pacing, teary-eyed, always tapping his leg,” she says. “He said, ‘I don’t get it. I feel so anxious’.”
Neither Stewart nor Wendy contacted the prescribing doctor in the six days between starting Paroxetine and his death, mostly because the period was so brief and they didn’t know about the possible risk.
Dr Healy, who has made a career of raising awareness about the adverse effects of medication, says that drug companies have not been forthcoming about akathisia and other adverse side effects of antidepressants.
At the centre of the suit was the “black box” warning label, a standard warning label about medication side effects, which only mentioned risk of suicide for patients under age 25, the minimum label required by FDA guidelines for such a drug. It did not mention akathisia. GSK maintains that the company shared its data with the FDA, who found no evidence of increased risk for people over 25.
The jury in the initial trial found GSK was liable for Stewart’s death because its labelling didn’t indicate the increased risk for suicidal behaviour in patients over 25 and awarded Stewart’s family $3 million. But the appeals court overturned the ruling — not because of a dispute over what killed Stewart, but over who was responsible. The upper court found that GSK can’t be sued for the effects of a generic copy of its drug.
“GSK approached the FDA four times about adding Paxil-specific data in the label,” said Evan Berland, a spokesman for GSK. “The FDA declined to update the individual product label in favour of class labelling. We respect the FDA’s expertise and authority; ultimately, the FDA has final say over the label.”
In May of this year, the Supreme Court declined to hear the appeal, effectively ending the case. The FDA has not changed their labeling guidelines.
More than 15 million Americans take antidepressants, a number that has tripled since 2000, and the drugs are generally considered an effective way to treat depression and prevent suicide.
Still, Dr Healy says that warning labels on those drugs that carry incomplete or inaccurate information about risks and side effects are a big problem. He also says that doctors are used to relying on labels and official warnings. When lesser-seen effects like akathisia occur, they don’t believe that the symptoms people are reporting could be from their medication.
Dr Kramer, however, says he doesn’t believe most doctors would ignore patients just because their symptoms aren’t in the official literature of a medication and that official warnings aren’t all doctors look at. “There are publications of case reports of suicides thought to be attributed to akathisia. The information is out there,” Dr Kramer says. “I don’t think doctors would not listen to a patient on this.”
Yet the prescribing doctors for Stewart and Joe were not aware of akathisia and did not warn their patients about the possible effect, according to family members. Joe and Stewart’s prescribers were primary-care doctors, not psychiatrists.
For a month, Janet had witnessed Joe turn into a shell of himself and says she felt powerless to stop him. She hadn’t contacted the doctor to report the symptoms. “I didn’t know enough to even call the doctor,” she says.
Shortly before the trip, she asked Joe to stop taking the medication. Joe told her he stopped taking the pills, but she can’t be sure he did.
At the dinner, Joe struggled to carry on conversations and told his wife his colleagues “didn’t want him here.” When they left the event, she remembers him saying “It’s all over.”
After the dinner, Joe got in bed, hid under the covers, and said goodnight. Fifteen minutes later, he popped up, put on his shorts, and started pacing the room.
“I’m going to jump,” he said.
Janet tried to stop him as she screamed for help, but he was too strong and she couldn’t restrain him. For a moment, he sat quietly on the bed and looked at her. She noticed his eyes were white, no pupils. Then he charged to the hotel-room balcony. Janet tried to grab his ankle to stop him, but she missed and he jumped right in front of her.
“I couldn’t stop him. It was like his mind just snapped,” Janet says. “My Joe would never have done this.”
Even though her lawsuit did not yield a settlement, Wendy Dolin considers it a success because the suit helped bring attention to akathisia.
She started MISSD, (the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin), a nonprofit to raise awareness about the condition. She has presented her story at psychiatric conferences and formed a community for akathisia survivors and those who have lost loved ones.
“What has been amazing to me is how many people have said to me, ‘I’ve felt this way and I didn’t have a name for it’,” she says. “It started with just my friends and family, but in the last four years it’s turned into an international meeting place for people impacted by akathisia.”
Finding MISSD is how Janet Schiel learned more about akathisia and how she saw she wasn’t alone. She wound up attending Wendy’s trial to show her support, and has now started her own awareness campaign, Butterflies for Joe.
Acute akathisia is a pernicious problem. It’s deadly but rare, and it strikes quickly as result of medications like SSRIs that are increasingly common. Janet and Wendy recognize that these medications are vital for many. They don’t want to discourage people from taking medication they need, but they don’t want other families to experience the shock and grief of what happened to them.
“We are a safe-patient movement,” Wendy says. “People have a right to know what the risks are.”
MISSD has commissioned Akathisia 101.
“The free, online one-hour continuing education course is open to all who want to better understand, identify and respond to akathisia. Akathisia 101 is approved by the National Association of Social Workers for 1 continuing education contact hour. Healthcare and crisis teams, patients, therapists, caregivers, doctors, first-responders, drug safety advocates and educators — everyone can benefit from akathisia awareness.”