Katie was prescribed medication taken by millions of Americans… then a terrifying condition left her moving uncontrollably. Now, experts warn little-known side effect that caused ‘inner terror’

When Katie Brennan found herself struggling to sleep, she assumed it would pass.

It was difficult, of course, but as the 48-year-old mother-of-six put it: ‘I thought I could manage.’

She had recently left the school where she had taught English for 20 years for a new job – and found the wrench of leaving behind two decades of familiar faces harder than she had expected.

Katie, from north-central Minnesota, says: ‘The children there were like my own. I missed them.’

Then, during a routine allergy appointment in October 2014, the subject came up almost by chance.

Katie happened to mention that she was stressed and struggling to sleep and was given a mental health questionnaire to fill in.

She says: ‘I must have flunked it.’

With little further prompting, Katie left the appointment with prescriptions for three medications: zolpidem, better known as Ambien, to help her sleep, the antidepressant fluoxetine, or Prozac, and the anti-anxiety drug lorazepam, or Ativan.

She had no reason to think taking them would be anything other than routine. But first, the Ambien seemed to make her sleep worse. Then she began taking Prozac.

Within days, something was terribly wrong.

Katie recalls being consumed by an ‘overwhelming’ feeling of panic and agitation. Then came an almost uncontrollable need to move.

‘It felt like my nervous system was on fire,’ she says. ‘I was in utter panic. I couldn’t stop moving and it felt like my heart was beating out of my chest.

‘There’s this hill near our house and I got on a bike and rode it up and down and up and down.’

Soon she was pacing for hours at a time. When she tried to sit down, she rocked back and forth.

Her family called her medical provider, who prescribed another drug which Katie believes was the antidepressant sertraline, or Zoloft.

Far from easing her symptoms, she says it was ‘like pouring gasoline on a fire’.

When the family called again, the doctor convinced her to take the Ativan. Katie says it helped calm her down, but she didn’t ‘go back to normal’.

She says: ‘My problems sleeping continued and I still struggled to sit down or stay still for long. I tried to keep working, but found myself constantly pacing around.

‘If I stopped moving, I just had this pain. It felt like I was trying to crawl out of my skin.’

In December 2014, her concerned family took her to the ER, where she was admitted for observation. But after two days, she was sent home without a diagnosis.

Unable to control her movements, Katie was let go from her teaching job in March 2015. After that, her life began to unravel.

Eventually, she was subject to a civil commitment – the forced hospitalization of someone deemed to be mentally ill – which lasted for about a year.

It was in the second half of 2016, when her therapist referred her to a new doctor, that things finally began to look up.

‘This doctor actually listened to me,’ she says. ‘He noted all my symptoms and the fact I had never had any problems before.’

And, finally, Katie was given an explanation for what was happening to her: akathisia, a disorder characterized by intense restlessness and an overwhelming urge to move.

Katie is now sharing her story because she believes patients need to be more aware of the condition – and particularly the warning signs that can appear after starting or changing a medication.

She stresses that she is not telling people to stop taking antidepressants or other psychiatric drugs.

Instead, she wants patients who suddenly develop the same extraordinary restlessness she experienced to recognize that it could be a side effect – and seek medical advice before their symptoms are mistaken for something else.

‘If you catch it right away, you can minimize suffering – and that’s the key,’ she says. By speaking out, she hopes ‘to raise awareness, spare more needless suffering and save lives.’

Akathisia is a well-recognized, yet little-known side effect of a range of psychiatric medications, including some antidepressants.

Among them are the commonly prescribed SSRIs fluoxetine and sertraline – both of which Katie had been prescribed – as well as paroxetine, better known as Paxil.

As bizarre as it sounds, sufferers describe an overwhelming need to pace, fidget or rock back and forth. They may repeatedly cross and uncross their legs while sitting or constantly shift their weight from one foot to the other while standing.

But the condition can go far beyond physical restlessness. Patients describe intense inner torment, terror, anxiety and agitation that can become almost unbearable when they try to stop moving.

Symptoms can begin soon after starting a new medication or increasing the dose, but in some cases emerge months later or after a drug is stopped. While some cases are short-lived, others can persist for months or even longer.

And because the symptoms can closely resemble a psychiatric crisis, akathisia can be mistaken for anxiety, mania or psychosis – potentially leading doctors to increase doses or prescribe additional medication.

‘Clinicians often add multiple medications and even trial electroconvulsive therapy in desperation to help these suffering patients, but this can make the situation worse,’ says Dr Mark Horowitz, a psychiatrist at the University of Adelaide and vocal critic of the over-use of psychiatric medication.

There are no reliable figures for how many Americans suffer from akathisia.

But one study estimated 24 percent of medicated patients with schizophrenia experienced the condition, while another found it affected 39 percent of those taking the antipsychotic clozapine.

Other drugs to be linked to the condition include some anti-nausea medications, such as metoclopramide, which is commonly prescribed for nausea, vomiting and certain digestive problems.

For the overwhelming majority of people who take these drugs, akathisia does not occur. But for those who do develop it, the consequences can be devastating – leaving sufferers unable to work, sleep or carry out ordinary daily activities.

Exactly why some develop akathisia while millions of others take the same medications without problems is not fully understood.

The condition is thought to involve disruption to dopamine, a brain chemical that plays a key role in controlling movement.

Treating akathisia can also be complicated. If doctors suspect a medication is responsible, they may reduce the dose or switch the patient to another drug.

But patients are warned not to suddenly stop taking certain medications without advice, because withdrawal can trigger severe symptoms – including, in some cases, akathisia.

‘If someone abruptly stops taking the drugs, they can experience even worse symptoms,’ says Dr Josef Witt-Doerring, a psychiatrist in Utah.

‘People can be stuck in this state of akathisia for several years until they gradually recover.’

For Katie, however, recovery was not straightforward.

After initially improving as her medications were reduced, she says symptoms returned when she was temporarily transferred to the care of a new doctor, who prescribed clozapine, a powerful antipsychotic used to treat schizophrenia.

Katie claims she began hallucinating and, in March 2017, jumped from a 60ft bridge near her home.

Remarkably, she escaped with only bruising but was subsequently committed to psychiatric care for almost a year.

After her release, she returned to the previous doctor who had diagnosed akathisia and resumed reducing her medication.

In 2019, she suffered a further episode, which triggered manic behaviour, and was ordered into her third civil commitment, which lasted for six months.

Once discharged, she again began gradually reducing her medications once again, before finally stopping Ativan in the spring of 2021.

Now 59, Katie says the symptoms have gone – but she remains acutely aware of what the ordeal cost her.

She is sharing her story in the hope that other patients – and their doctors – will recognize the warning signs of akathisia before it devastates their lives as she says it did hers. 

‘My story is an all-too-common reality for those suffering from akathisia and their families,’ she says. ‘I want all those suffering to know they can heal, and they should never give up hope.’

For Katie, that awareness came painfully late.

‘This thing, it took 10 years of my life and a whole decade with my children,’ she says.

‘They are so important to me, they were why I needed to get better. It’s bittersweet that I’ve recovered, because now I really realize how much time I’ve lost.’