A study of people taking anti-psychotic drugs has found most try to get off them - often against their doctor's advice - and don't have the support to do so safely.
The research by Auckland University psychologist Miriam Larsen-Barr is the first in New Zealand to look at the experiences of people taking the powerful medications.
The former mental health care worker first became interested in the subject when she was sitting up late at night with people to make sure they took their medication.
They began to talk to her about the effects the drugs had on them, and the symptoms they continued to experience despite the medication.
Miriam Larsen-Barr Photo: Supplied
Over three years, Dr Larsen-Barr surveyed 144 people prescribed anti-psychotic medication for schizophrenia, bi-polar disorder and depression.
Some said the drugs were life-savers and useful tools, but others described them as hell, felt the medications weren't working or disliked the weight gain and the feeling of sedation.
"They commented on how difficult it could be to do the everyday things that one would need to do to have a meaningful happy life while being sedated like that."
And at one time or another most, even those who felt the drugs had been helpful, had tried to get off the medication.
While anti-psychotics had worked very well for some and they had found coming off them relatively easy, others reported the process had been painful and frightening, with unpleasant physical and emotional symptoms, and they'd had little choice but to go through it without medical help.
Dr Larsen-Barr said doctors were generally reluctant to help patients withdraw because they feared a relapse and because there was no best practice guide or specialist advice on how to mange it.
"One of the interview participants commented that she had searched New Zealand for specialised support, someone who knew specifically about stopping anti psychotics, and she couldn't find any. So I think that's a huge gap."
People who go it alone often become overwhelmed by withdrawal or rebound symptoms, lose their jobs, upset their families and end up in hospital often on a higher dose of medication than previously.
Some felt like failures, she said, but the support they really needed from the mental health system simply hadn't been there.
Other people in the study reported that with monitoring and back-up, including therapy, they'd been able to come off anti-psychotics either for long periods, or permanently.
Taimi Allan of advocacy group Changing Minds Photo: Supplied
Some 130,000 New Zealanders are taking anti-psychotics, according to Pharmac.
Taimi Allan was on psychiatric drugs from the age of 15, and came off them 12 years ago at the age of 30 with the help of a sympathetic GP, pharmacist and husband.
She had chosen to stop the medication because her relationships were suffering. "My husband was saying 'I'm living with a zombie now'," she said.
"[Anti-psychotic medication] numbs everything. It doesn't just numb the bad parts of your life ... it numbs feelings, tastes, colour, smell - all of those senses."
Ms Allan, chief executive of Auckland Mental Health advocacy organisation Changing Minds, said the study challenges the health system to listen to people in mental distress, and think harder.
She said like many others she was told to just go on taking the medication despite the well-known long-term risks of diabetes and heart problems.
"I used to get messages like 'this is something you'll have for the rest of your life' or 'this might be the best it gets'... And it's all based around risk and about not wanting to offer hope if no hope exists.
"But people don't get better from anything without that little spark of hope. "
Dr Larsen-Barr said since most will try to come off their prescribed drugs at some stage, support should be available to all, to save the cost and suffering of recurring mental health crises.
Mental Health Foundation chief executive Shaun Robinson said people in mental distress were often not well-informed about the effects and sometimes damaging side effects of anti-psychotics.
Too often people were put under the care of a GP and simply expected to go on taking medication which could shorten their lives - for the rest of their lives - with no other treatment options, or consideration for what they might want, he said.
" I think we now know a lot more about the wider, environmental, socail, lifestyle changes that need to be made to support somone's wellbeing.
"So just taking a myopic view of medications as the way to go - there's really not an excuse for that any more."