MEDICATION wasn’t her thing — she hadn’t taken an antibiotic since 1987. But when Tipperary-based mother of two Catherine* experienced a “bad menopause” and didn’t sleep for months, her doctor asked in August 2007 if she’d try a bit of Valium.
“I took no more than 5mg at night for two or three months. It worked — I was getting sleep.”
She planned to get off it by Christmas but her mother-in-law died and Catherine stayed on the Valium.
In early 2008, she was diagnosed with under-active thyroid: “I’d had no thyroid problem up to now.”
She got strange vibrations in her feet and tingling in her toes.
As time went on, Catherine got other symptoms: “Terrible sensations in my head and all through my body, like a revved-up sensation, like adrenalin was flowing and had nowhere to go”.
By early 2012, she’d been to every alternative therapist she could think of.
“I still thought the Valium was great stuff.”
She recalls her husband, a farmer who has been her rock, saying she was getting nowhere. And then she read a newspaper article about “the drug that steals women’s lives” — benzodiazepines, of which Valium is one.
“They listed [what seemed like] hundreds of symptoms — I had 97 of them.”
Over seven weeks, Catherine gradually came off the drug.
“I did it off my own bat,” she says.
She realised later her tapering off should have taken much longer. She has been off it now for 49 months and since then has had seizures in bed at night.
She has been diagnosed with drug-induced dystonia, a movement disorder in which muscles contract uncontrollably.
“It means horrendous pain, all my body in spasm — the pain is cruel.”
Professor Malcolm Lader of the Institute of Psychiatry, King’s College, London, was interviewed for the 2016 documentary Benzodiazepine Medical Disaster.
He said withdrawing from benzodiazepines is more difficult than withdrawing from heroin.
Prof Lader has published more than 100 papers on benzodiazepines, drugs that are prescribed for anxiety, insomnia, some forms of epilepsy and occasionally to treat muscle spasm.
He estimates up to 30% of people can suffer severe withdrawal reactions.
In the documentary, made by former government press secretary and RTÉ presenter Shane Kenny, Prof Lader cites concerns he had dating back to the 1970s about overprescription in Britain and the effect of the drugs.
“[I felt] the extent of prescription couldn’t reflect definite psychiatric illness in the population. It was [also] clear to me there was dependency at therapeutic doses.”
Prof Lader said trying to get the medical profession to accept this “has been a 40-year task”.
Dr Mark Murphy, chair of communications for the Irish College of General Practitioners, says GPs must abide by evidence-based guidelines. “GPs do not and should not prescribe benzodiazepines for acute anxiety and depression.
The reason is the 30 years of evidence that they can create dependence and tolerance and [cause] more problems, while not addressing underlying causes of a mental health presentation.”
Dr Murphy says there are “exceptional circumstances” when GPs should prescribe benzodiazepines for a period of less than two weeks.
“As a general rule, prescribing a sedative for more than four weeks is certainly not recommended.”
Dr Murphy believes there’s “less prescribing of benzodiazepines on the ground” and cites a study published in the British Medical Journal showing prescribing of benzodiazepines for periods over four weeks halved in Ireland from 1997-12.
“It was one of the few medicines to not show a rise in that time.”
But he confirms a “legacy” issue with benzodiazepines.
“There are patients prescribed benzodiazepines today who started on them 20 or 30 years ago and who are still on them. Those people have a dependency on the drugs and it’s very difficult for us to de-prescribe.”
HSE data from the Primary Care Reimbursement Services show that in 2015, (the latest year for which figures are available) almost 900,000 prescriptions were written for just two benzodiazepine drugs: Valium and Xanax.
The total number of prescriptions in the same year was 41.4 million.
In the top 100 most commonly prescribed products, Valium came in at number 27, while Xanax was 30th.
Shane Kenny, who made his documentary after his own traumatic medical experience with Valium, doesn’t believe all doctors follow strict prescription guidelines for benzodiazepines.
“I don’t agree we can be confident that most doctors understand the dangers of benzodiazepines and that they should only prescribe them for two to four weeks.”
Kenny was prescribed Valium in 2008 for the inner ear condition Meniere's Disease, causing tinnitus. "I took Valium continuously for two weeks for insomnia caused by the tinnitus. Then I stopped.
“I took Valium continuously for two weeks for insomnia. Then I stopped.”
Soon after, he started getting strange sensations in his ears and much worse tinnitus.
“I got touch sensitivity. I couldn’t bear to walk on carpet or wear wool socks.”
Over the next six to eight weeks, when symptoms were bad, Kenny took 2mg of Valium and it seemed to help. At the time, he was director of public affairs at DCU.
“I was finding it very difficult to conduct meetings — I could only bear to have one person speaking to me at a time. I couldn’t bear the sound of a kettle boiling or an alarm ringing.”
Assuming it was all to do with Meniere’s disease, he began taking a continuous low dose of Valium, “about one-third of what’s considered a therapeutic dose”. He got shooting pains in his legs and realised this couldn’t be Meniere’s.
On the internet, he discovered, to his “absolute horror”, the Ashton Manual: Benzodiazepines — how they work and how to withdraw. “The advice was to taper off or you could get a seizure and it could kill you.”
Kenny hasn’t taken Valium for seven years. He’s in chronic pain every day. “I have really serious neuropathic pain in my legs and very disturbed digestion.” Because nobody can predict who will suffer serious long-term withdrawal effects from benzodiazepines, Kenny believes doctors prescribing these drugs are “to some extent playing Russian roulette with people’s lives”.
Dr Terry Lynch, a GP, psychotherapist, and author of Beyond Prozac, cites one duty of the medical profession: To flag issues that impinge on health. Doctors regularly talk about our problem with alcohol, for example. With benzodiazepine-linked dependency known for 20-30 years, Dr Lynch asks: “Why didn’t the medical profession immediately start calling for benzodiazepine withdrawal centres to be created? Why weren’t such centres made adequately available to care for people trying to get off these drugs?”
He is adamant we need organised systematic centres to help people get off these drugs.
He has met people struggling to get off them. “If someone’s on benzodiazepines a few months, the effectiveness diminishes significantly. The body develops tolerance. Many people end up taking a drug that’s not helping them.” Others feel it isn’t right to be taking a tablet for anxiety month after month. “They think there should be another way.”
Some get side-effects similar to the symptoms that initially put them on benzodiazepines. “People taking them for anxiety can feel they’re getting more anxious.”
Dublin mother Mary* was put on Dalmane — a benzodiazepine similar to Valium — while in hospital for post-natal depression 35 years ago. “I’m still on it. Last February, I was in hospital in St
John of God’s. They tried to take me off it.” Within two days her body went into shock. “I couldn’t even hold a cup of tea. I was hysterical. I couldn’t stop crying. I told the doctor ‘you have to put me back on it’. He did, straight away, there was no question. I’m OK now but I’ll never try again to come off it.”
Dr Lynch feels that benzodiazepine withdrawal education hasn’t been prioritised among doctors. “GPs haven’t familiarised themselves with the processes of withdrawal, how to do it, and what the patient might meet or need on the way. Many doctors aren’t aware of the Ashton Protocol [which details a method of reducing gradually].”
Professor Heather Ashton, a UK doctor and clinical pharmacologist, published the Ashton Manual online in 2002. Interviewed for Kenny’s documentary, she said she wrote it because patients were saying they weren’t getting help from their GPs or psychiatrists. “Patients snapped it up. Doctors don’t read it.”
Dr Lynch believes doctors are in denial. “It’s a problem the medical profession contributed to and it’s embarrassing to them. So they’ve been somewhat in denial about the problem and the solutions.”
But Dr Mike Scully, consultant psychiatrist and chair of the Faculty of Addictions Psychiatry in the College of Psychiatrists of Ireland, says government funding for mental health is low here by international standards. The proportion of the healthcare budget that goes towards mental health in Ireland is 6%. In Britain, it’s 12%, in Canada and New Zealand it’s 11%.
“We’re more limited [in what we can do]. Interventions routinely available elsewhere — counselling, clinical psychology, psychotherapy — aren’t routinely available here, so the only available intervention might be the pharmacological one, even though that mightn’t be the [ideal] first choice.”
As Dr Scully sees it: “You’re going to better direct patients to what’s potentially best for them on a national budget of 12% for mental health than on a budget of just 6%.”
Dr Colin O’Gara, a psychiatrist and head of addiction studies at St John of God’s Hospital, is certainly used to seeing the dependency-effects of benzodiazepines. He says these drugs have an important role in sedation and treatment of anxiety in acutely distressed patients. “Other drugs don’t have the same ability to sedate. An alternative would be anti-psychotic medication, which can have significant side- effects.”
Dr O’Gara says benzodiazepine use should be kept to less than four weeks but adds that the “realities and practicalities” of mental disorder can make this difficult. “These disorders don’t always resolve from acute states within four weeks.”
He says discussions about benzodiazepines sometimes “discard the fact” that working at the moderate to severe end of mental disorder can be “very challenging”.
Greg White practised as a psychotherapist for 20 years. He went on Valium in the 1970s following a car accident. “My instinct was to get off them. I realised I was in shock — I was quite psychologically aware. I stopped taking them. I got through it myself. I have a history of talking my problems out.”
At first glance, he says it seems reasonable for GPs to give acutely distressed people — who need to get on with life’s responsibilities — something to forestall their anxiety. “But the more we repress stuff, the more damage it does to us long-term. That understanding has yet to penetrate [society].”
The dominant Irish prescription drug culture for the treatment of mental health was heavily criticised in a groundbreaking document, Vision for Change, published in 2006. The report, by an expert group on mental health policy, recommended a broad range of therapies, including psychotherapy, to address complex needs of those with mental illness. “An overall thrust of Vision for Change was to look at the whole paradigm of mental health and ask, is this the best we can do?” says Dr Lynch, who was on the expert group.
Upon publication, he says there was enthusiasm for it. “Within one to four years, that was replaced by disappointment. The HSE was slow to get up to speed on the whole thing.”
Stephen McMahon of the Irish Patients’ Association meets patients dependent on benzodiazepines “who had one problem and who now have another”.
“I think anyone prescribed benzodiazepines should sign a consent form where they’re told all the risks and side-effects.”
In Benzodiazepine Medical Disaster, Kenny says those who voluntarily take illegal drugs get a lot of help. “But victims of doctor-induced illness from prescribed drugs often get little informed State help.”
* Names have been changed
Syndrome needs to be validated
Cathy Halpin, 44, is married to Lorcan – their daughter, Lily, is six. In 2013, Cathy hurt her back and – experiencing burning sensations in her legs – was put on Zopiclone (sleeping tablet) and an anti-depressant.
“I was very stressed about my legs, really upset and anxious. After two weeks, I still didn’t feel right, so my GP put me on Xanax until the anti-depressant kicked in.”
The burning sensation continued. A pain management consultant gave Cathy a three-to-four week Xanax prescription plus an anti-depressant for nerve pain.
“I started taking Xanax everyday. I had a lot of it and it was working. I didn’t see any reason not to. The consultant had given me enough to take two a day, so I was able to spread it out. I’d say I was on Xanax three to four months on and off.
“Just before Christmas 2013, I didn’t feel well at all. The muscles in my legs were contracting involuntarily. It was really weird.
"At Caredoc, they said my heart rate was too fast, my blood pressure too low. I was admitted. I thought I’d die that day. I couldn’t walk properly my legs were contracting so much.”
Next morning, the Tipperary woman’s heart rate and blood pressure were normal. Discharged with a diagnosis of drug-induced arrhythmia she went home with another prescription.
“I’d got such a fright, I said I’m not taking any tablet anymore. I knew in my gut it had to be the medication. I was told I’d been on low doses for a short period of time so if I wanted to stay off them I could, so I did.
“I was fine for two weeks. I had two glasses of wine one night – my body started shaking, my heart rate was up. A few days later, I got a really bad tremor inside my body under my arm. It got progressively worse and spread to my whole body. I started getting really bad palpitations. I constantly felt I was going to get a seizure.
“I thought it was withdrawal [from medication], that it wouldn’t last long. It got worse. Lying in bed, my body jerked uncontrollably, I’d get stabbing pains anywhere and flashing lights when I closed my eyes. My belly swelled like I was six months pregnant. I was getting two to three hours sleep a night – my body constantly woken by jerks and jolts.
“The shakes within my body have continued for three and a half years, like a car engine on inside all the time. My GP was so supportive but she didn’t know what was going on.
"I can’t put hand on heart and say which drug did it – from my research any of the drugs I was on can do this. I’m off everything 43 months. I’m worse now than I was.
“I have excruciating right shoulder pain. I can only move my arm from my elbow. My husband dresses me. He washes me. I can’t hug Lily properly – it hurts too much. It has to be a sideways hug. Lily’s what keeps me going.
“Until the day a doctor validates it and gives the diagnosis ‘benzodiazepine withdrawal syndrome’, people won’t take it seriously. Validation is what we need.”