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Benzo Bulletin is a Benzodiazepine Information Coalition series highlighting some of the latest benzodiazepine-related information.

From Luke Montagu for the Daily Mail. Montagu experienced his own protracted withdrawal syndrome from benzodiazepines and antidepressants:

It’s an issue that matters to me personally, as I spent more than three years unable to function after withdrawing from sleeping pills and antidepressants.

When I was 19, I was admitted to hospital for a sinus operation and suffered from post-operative headaches and other side-effects, likely caused by the anaesthetic.

However, this was incorrectly diagnosed, and I was prescribed a series of antidepressants and sleeping pills. I remained on these for years with very little monitoring, until I eventually went cold turkey in 2009 on the advice of my doctor at the time.

I experienced devastating withdrawal symptoms and was unable to work or leave the house for years.

The suffering was indescribable: symptoms included severe memory and cognitive problems, sensory distortions, extreme anxiety, insomnia, tinnitus and nerve pain.

Somehow I dragged myself through each day until things improved, though the nerve pain and tinnitus continued more than ten years later. I sued my doctor as he should never have withdrawn the drugs so quickly — you must always taper off these medicines very slowly.

During this time, I discovered online forums and Facebook groups where thousands of others were suffering in a similar way, invisible to the health system and without any NHS-funded services to help.

The only life-saving support they received was from others in these online communities.

But for some people the suffering is so severe it leads to suicide.

Yet this was supposed to change after Public Health England (PHE) published a review in 2019 showing that around 25 per cent of adults had been prescribed one or more of these drugs in the previous year, with huge numbers taking them for years, often contrary to the prescribing guidelines.

New guidelines will not include the slow, hyperbolic tapering methods for safer cessation due to lack of available research, even though patients report the most success with it:

Below randomised controlled trials are other acceptable forms of evidence. As NICE says on its website: ‘This can include qualitative and quantitative evidence, from the literature or submitted by stakeholders. It can also include observational data and testimonies from experts.’

In other words, it can include reports from patient groups and experts themselves.

It was clear from the beginning that there were very few randomised controlled trials that would be relevant. Drug companies have little incentive to study safe ways to take patients off their drugs — they profit when more people consume them.

Yet the NICE researchers wasted months trawling through the evidence, hauling up long-forgotten randomised controlled trials from the murky depths of largely industry-sponsored research. More than 1,500 pages of evidence review were written up, most of which widely missed the mark.

That’s because none of these studies covered slow, hyperbolic tapering, the most important intervention for safe withdrawal. It has been developed over many years based on the experience of thousands of people and is backed by articles published in journals.

And yet — perhaps because this method has not been subject to a randomised controlled trial — the draft of the new NICE guidelines fails to include any details, such as how to taper, how frequently to reduce and by how much.

These are supposed to be guidelines on safe withdrawal, and yet they fail to cover the most basic principles. It’s like publishing a recipe for roast chicken without giving either the oven temperature or the cooking time.

Read Why I resigned over the failure to help prescription pill victims HERE

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