Emma Saunders, an actress and photographer, went to her father’s private GP in Chelsea with tinnitus in November 2020. ‘I’d woken up with a loud ringing in my ears — it was distressing because I’d not had anything like it before and didn’t know what was going on,’ she says.
‘I went privately because I expected the doctor to have contacts and to refer me to a specialist for tests.’
Instead, the GP prescribed a tranquilliser, lorazepam, telling Emma, then 34, it would calm her down and help her sleep.
‘The doctor obviously thought I was having a meltdown — he said he was going to give me something to take until the pandemic was over [the UK was then in a national lockdown] and life got back to normal,’ she says.
Emma believes the decision to take the medication changed the course of her life for the worse and she is still suffering now.
Emma Saunders was sectioned and admitted to three psychiatric hospitals after a GP prescribed her a tranquilliser for her tinnitus in November 2020
‘Over the next three years, I was sectioned and admitted to three psychiatric hospitals. I became psychotic and was in such unbearable physical and mental agony that I tried to kill myself several times.’
She adds: ‘Three-and-a-half years later I’m still unwell. I’ve got long-term nerve damage, have severe migraines and pain in my eyes and am often confined to my bed for weeks because I’m so unwell.’
Emma’s story began with a tranquilliser, but her worsening condition and long-term health problems are linked to the side-effects of the drug itself — but as is too often the case, these symptoms were seen as her condition worsening — rather than down to the drug itself, leading to more medication, triggering an agonising condition called akathisia.
This is a dangerous side-effect of some medications, mainly antipsychotics, but it can also occur with antidepressants and even some antibiotics.
Akathisia causes intense restlessness, an inability to keep still and a feeling of terror. It can drive patients to kill themselves.
Lorazepam is a benzodiazepine, a type of drug used to treat conditions such as anxiety, depression and insomnia.
‘The GP said it was completely safe and I could take it until the end of lockdown [which lasted, with periods of relaxation of the rules in between, for another six months],’ says Emma.
‘I thought nothing of it because he’s a doctor and I trusted him.’
In fact, under official guidelines, these drugs should be prescribed for no more than two to four weeks, and should not be used as first-line treatments for conditions such as anxiety — the guidelines also warn that being dependent on them is common between two to four weeks of taking them.
As David Healy, a former professor of psychiatry at the University of Wales who is an expert in the side-effects of psychiatric medication, explains: ‘These drugs can be useful for treating short-term anxiety, but in the longer term they can be lethal.
‘People can get hooked on them in just a week and withdrawal problems can be so severe that some people are unable to get off them, or do so with devastating consequences.’
I remember first coming across the problems these pills cause in the 1980s when I was a researcher working on the TV consumer programme That’s Life!
Emma believes the decision to take the medication changed the course of her life for the worse and she is still suffering now
Emma’s worsening condition and long-term health problems are linked to the side-effects of the tranquiliser drug itself
Benzodiazepine addiction was one of the campaigns championed by my then boss, Esther Rantzen. In the following decades, 117 UK GPs and 50 health authorities were sued by patients to recover damages for the harmful effects of dependence and withdrawal.
Yet despite such concerns and despite the official guidelines, nearly 1.5 million people in England alone take benzodiazepines.
Thousands more are on them for longer than as set out in official guidelines — 120,000 people were given continuous prescriptions for benzodiazepines between April 2015 and March 2018, according to the latest figures from the National Institute for Health and Care Excellence.
It’s not ‘simply’ that people are being put on — and then left on — these drugs inappropriately, there is a worrying lack of awareness among healthcare professionals about the side-effects. Emma began having problems with lorazepam after just a month of starting to take it.
‘It helped me to sleep at first, but then it began to have the opposite effect,’ she says.
‘I was waking up in the early hours in a state of terror. It got worse until it wasn’t just in the middle of the night, it was throughout the day, too.’
(A lesser concern was that it hadn’t helped her tinnitus either, more on that later.)
Professor Healy explains: ‘Lorazepam is a short-acting drug which means it may put you to sleep but, after a few hours, it will wash out of your system and you will wake up again.’
He says what Emma experienced sounds like ‘interdose’ withdrawal — ‘this happens when withdrawal symptoms emerge in between scheduled doses: the problem with benzodiazepines is that they can cause the things they treat, so when the drug wears off patients can get rebound anxiety or rebound insomnia’.
Emma asked her GP if she should continue taking the drug ‘and he said it was safe to carry on with it’, she recalls.
With Covid travel restrictions relaxed, Emma had gone to stay with her father in Spain.
‘I was in the glorious sunshine but I felt anxious all the time,’ she says. ‘I couldn’t eat, concentrate or do anything.’
Eight weeks after starting on lorazepam Emma saw a doctor in Spain who diagnosed what she now knows was interdose withdrawal as anxiety, and prescribed citalopram as well. This is a type of SSRI (selective serotonin reuptake inhibitor), a class of antidepressants that is widely prescribed.
Emma’s condition became worse, she recalls: ‘Within hours of taking it, I started having a feeling of constant terror, I was rocking back and forth in my bed and I was unable to sit still.’
Her inability to keep still is characteristic of akathisia.
Professor Healy explains: ‘This is an agonising disorder which is typically caused by antipsychotics, but can also be caused by antidepressants, benzodiazepines and some other medications, such as antiemetics [used to prevent nausea]; pregabalin [for epilepsy, anxiety and nerve pain]; antimalarials and even some antibiotics.
‘It tends to happen when people first go on the drug, come off or change dose. I’ve seen people who are pacing and screaming and banging their heads against walls because they are so distressed by it,’ says Professor Healy.
While the exact cause and the proportion of people taking medication who are affected by akathisia are not known, in a study Professor Healy ran in 2000, where 20 healthy people were given the SSRI sertraline, one in ten developed akathisia, reported the journal Primary Care Psychiatry.
Nicole Lamberson is the medical director of Benzodiazepine Information Coalition — a U.S. based support group of patients and medical professionals. She says they are contacted by sufferers from all over the world, including many in the UK.
It’s crazy how these medicines can alter your state from being a very happy person to all of a sudden thinking about suicide all the time, Emma says
‘We hear regularly that someone has taken their own life because the agony of akathisia and drug withdrawal was too much to bear,’ she says. With the permission of their families, Nicole has posted a video on YouTube of Christine Narloch, from Wisconsin, and Stephanie Eisensmith, from Florida, who both suffered akathisia after being taken off their prescription benzodiazepines too quickly. Both ended their lives because the agony was too much.
The videos are deeply distressing, showing the women unable to stop moving and crying.
They both asked for these videos to be made public to raise awareness.
Christine wrote to her family before she took her own life in 2017, aged 48: ‘I’ve suffered horrifically from the lorazepam prescribed by a doctor. Please know I tried to survive. Mikey [her husband] has a video to show you a tiny bit of what I went through.’
The videos have a particular poignancy for me as I, too, wanted to end my life due to akathisia. My ordeal began in 2012 when I went to a doctor with insomnia caused by a divorce. I wanted sleeping pills, but was prescribed antidepressant escitalopram, an SSRI.
I am one of the estimated 2 to 5 per cent of people who suffer a severe adverse reaction to antidepressants: I became acutely psychotic and was admitted to a private hospital, where doctors didn’t realise it was the antidepressant that had caused my psychosis.
They sectioned me, prescribing more antidepressants and anti-psychotics and, over the course of a year, I became nearly catatonic.
Almost as soon as I started on the original medication I developed acute akathisia — even now, 12 years later, I find it hard to relive the agony.
At times, the inability to sit still was so unbearable that I would wander the streets for hours.
Sometimes it was so agonising that I thought of jumping under a train. I also lived in a state of terror as if I was about to be attacked. My ordeal ended with my admission to a different hospital where I went cold turkey.
Since then I have been completely well and drug-free.
But throughout that year, not one medical professional recognised that my condition had been caused by drug-induced akathisia.
Instead, they thought my desire to kill myself and inability to stop moving was simply a mental health problem.
Having gone online and found support groups of people who were suffering from benzodiazepine and antidepressant withdrawal, Emma wondered if her medication might also be to blame for her symptoms — so a month after being put on citalopram, she started to reduce the dose. While her akathisia improved, she still wasn’t back to her usual self, suffering insomnia and ‘unnatural anxiety — I could barely leave my room’, she says.
Two months after coming off citalopram, Emma decided to stop taking the lorazepam, too, which she’d been on for five-and-a-half months. But this made her condition, including the akathisia, much worse.
‘I started getting electric- shock feelings, and I didn’t sleep at all,’ she recalls. ‘My eyesight was blurry and my hearing was muffled. I had this strange feeling that I had left my body.’
These are classic signs of antidepressant and benzodiazepine withdrawal, say experts.
Concerned, Emma’s father took her to a hospital.
She recalls: ‘I was strapped into a chair and taken up to this awful psychiatric unit — it was like a prison rather than a place where a doctor would send you to get better. I realised it was the medication that was making me ill and the last thing I wanted was any more drugs. But they made me take sertraline [another SSRI] and threatened to inject me with the antipsychotic olanzapine if I didn’t agree.
‘My tinnitus was screaming in my ears — it felt like my whole body was a melting pot of hell.’
After three days, Emma persuaded doctors to discharge her. But, still suffering, ‘I Googled how to kill myself — the awful thing is I didn’t want to die, I just wanted the suffering to stop’, she says.
In the summer of 2021, her mother flew over to take her home to the UK. Back in London, her condition worsened.
‘At this point I’m down to 5st —usually I’m 8st — I’m 5ft 4in,’ she says. ‘I’m pacing 24/7 in a circle and I still can’t sleep. My friend has taken a video of this; I’m in full psychosis. I thought I was dead, that I was in hell and that my mum was the Devil.’
Over the next four months, Emma was sectioned twice and put on more antidepressants and antipsychotics. Her physical and mental health declined as the akathisia and other withdrawal symptoms escalated and resulted in more attempts to take her life.
Her nightmare ended in November 2021, a year after it began, when a nurse gave her lorazepam, the same drug that had begun her ordeal — this time, to help with her agitation and constant pacing.
‘Suddenly, I felt OK,’ says Emma. ‘It was like a miracle. I was able to have a normal conversation.’
She saw a private psychiatrist who told her that she was suffering protracted withdrawal from the lorazepam, and he recommended she reinstate it and taper off it slowly, along with the other antidepressant and antipsychotic drugs she’d been prescribed.
Emma has been doing this for two-and-a-half years and has been told it will take several more to get off them completely.
‘The withdrawal symptoms are sometimes so bad that it feels as if I’m having seizures or a stroke — and sometimes the akathisia comes back,’ she says. She also still suffers from tinnitus — a specialist has diagnosed a problem with her Eustachian tube, probably caused by Covid, which she had during the first lockdown.
While I’m disturbed by Emma’s story, I’m not at all surprised.
After my own experience, I set up a campaigning website and I am frequently contacted by people like Emma, who have no history of mental illness but who also become suicidal from drugs such as antidepressants, antipsychotics and benzodiazepines.
Last week, I was contacted by a head teacher who developed akathisia and became suicidal immediately after taking citalopram for stress.
After a year, which included several attempts to end his life, he was lucky to meet a psychiatrist who correctly diagnosed that his condition had been caused by the drug and helped taper him off it.
Now recovered, he told me that he was so desperate he rang the Samaritans 15 times.
He believes he could have been saved a year of hell if it had raised the possibility that some medications can cause people to want to kill themselves and that he may be suffering akathisia. Emma, too, had contacted the Samaritans.
Prompted by their stories, I spoke to a number of experts about what could be done to address this problem — their suggestion was for medical professionals and helpline staff alike to ask people: ‘Have you become suicidal since going on, changing dose or coming off a drug that lists suicidal thoughts as a potential side-effect?’
When I contacted the Samaritans a spokesperson said: ‘Our listening volunteers are not medically trained clinicians and do not offer advice on prescription medication.
‘Discussions about treatment options, including any possible side-effects, must be had with a GP or other qualified healthcare professional.’
In Professor Healy’s view, while suicide prevention services cannot be expected to offer medical advice, ‘they could raise the possibility with callers that their problems may be caused by medication and that if there’s a risk, they should go back to their doctor or seek medical advice’.
This, he says, could save people taking their own lives ‘and prevent thousands from the agony caused by an adverse drug reaction’.
That’s why I am organising a petition to call for suicide prevention services to ask patients this key question.
Emma adds: ‘It’s crazy how these medicines can alter your state from being a very happy person to all of a sudden thinking about suicide all the time.
‘I didn’t actually want to die — I was just experiencing the side-effects of these drugs.’
Katinka Blackford Newman’s website can be found at antidepressantrisks.org
