My story. A letter to BBC Panorama.

Dear BBC Panorama,

Since your 2001 programme “The Tranquilliser Trap” nothing has changed.

GPs still hand out prescriptions under the very dangerous false belief that benzodiazepines are either safe for long term use or that physical dependency only “affects those with addictive personalities”.

The GPs who are aware of the NICE guidelines seem to only grasp that benzodiazepines are “addictive” and they could get sued for overprescribing them. What they do not get taught is how to recognise symptoms of ‘tolerance’ side effects which leads to a plethora of highly disabling symptoms that go misdiagnosed as something else and can only be rectified by slowly tapering off the medication using Professor Heather Ashton’s detailed ‘AshtonManual’, but even then many suffer long term or even permanent brain and central nervous system damage.

I am a member of many campaign groups on Facebook which is where those most desperate turn. I have set up campaign groups of my own including “Prescribed Harm uk”.

Members talk time and time again of even having withdrawn from benzodiazepines by themselves with zero support, when they then suffer long term disability as a result, doctors deny long-term harm is possible. Patients and their symptoms are labelled as mental illness, silenced, notes go missing, patients are stonewalled and left abandoned with no recognition or formal diagnosis of benzodiazepine withdrawal syndrome in their notes. This often leads to further harm and inappropriate re-drugging, labelling or neglect of the patient.

Patients are desperate, often unable to even leave the house, suffering crippling neurological symptoms and Central Nervous System pain rendering any quality of life impossible. It is Facebook forums who help those people, manned by fellow sufferers also with no support.

I was prescribed benzodiazepines  (Xanax and Zopliclone) in Brussels Belgium 2002 for career stress a few weeks after I’d started my job at the European Parliament. I had previously had adverse reactions to SSRIs that were (quite inappropriately) prescribed for severe childhood trauma.  Therefore I was told benzodiazepines would be safer for me. (I should add here that the childhood trauma was caused by a close family members own adverse reaction to benzodiazepines). Within two weeks of taking the medication I became extremely physically and mentally unwell and all my symptoms were all wrongly dismissed as symptoms of depression and PTSD.  I had previously held down jobs at the European Parliament’s London press office and the United Nations in New York.

However, rather than help me in my career I not only lost my ability to work or function but also nearly my life. After withdrawing from both Xanax and Zopliclone I returned to the UK in a horrendous physical state.  I had no idea I was suffering from post-withdrawal syndrome. My GP dismissed my physical symptoms as “anxiety” and placed me on Diazepam, yet another benzodiazpine. In 2013 my dosage of benzodiazepines was increased ultimately to 100 mg of combined diazepam and temazepam a day combined with painkillers, and propranolol. I was misdiagnosed with not only psychological symptoms but even a terminal illness by an A&E doctor. I suffered cardiac arrests, a mini stroke and circa 150 A&E admissions and six ICU admission for life threatening overdose. My GP issued a “Do not resuscitate” form. Not once did any medical professional recognise that I was suffering Benzodiazepine tolerance withdrawal.  I was told all my symptoms, even the physical ones, were PTSD. I wasted years of my life and money on futile psychological therapies for PTSD hoping that would help. Doctors thought problems could be stopped if I just “put my mind to it”.  They saw this as a matter of will power and not of a physical dependence stronger than heroin that they themselves, albeit unknowingly, had caused.

I was a Cambridge graduate diagnosed as only having the functioning of a four year old child. I could not function at all or look after myself. I was also highly disinhibited and by now losing my memory. My home situation had become highly complex due to a close family member also suffering from a long term benzodiazpine prescription.  We had no idea that benzodiazepines caused depression, rages and volatility. Not only did I never imagine that medicine prescribed by my doctor could do such severe and complex harm – even when at the prescribed low doses but I also had no idea that the phenomena I was experiencing had occurred to many others and were well documented as far back as the 1970’s.

I was deregistered from my GP surgery two weeks after an ICU admission for a benzodiazpine induced suicide attempt. By this stage, rather than diagnose that I was in tolerance withdrawal and that was the cause, one GP was adamant I had a dependent personality trait (aka “clingey”). My attempts to end my life were branded “misuse”. There was simply no understanding whatsoever of the mechanism of the drug and my inability to simply ‘stop’ the “behaviours” of ‘overdosing’. I never took these tablets for a kick or a thrill. Nor did I ever purchase from the internet.  When I refused Pregabalin I was labelled “incompliant”. As we now know Pregabalin is also dependency forming. At the time my correct decision to avoid further dependency forming medication was branded irrational.

After the deregistration with no warning, whilst my brain was impaired, by the very surgery who had caused that impairment, the subsequent GP surgery increased my dose to a combined 100 mg of benzodiazepines a day.  The increase in dose erased any functioning, personality or health I had left.

Doctors are not educated about the mental or physical symptoms of benzodiazpine tolerance withdrawal and damage.   It is shocking that many victims know more than the medical professionals. Sadly, some GPs are so spellbound by pharmaceutical marketing techniques and so overly trusting of government mechanisms to protect the public from such harms, that they do not support their patients through the aftermath. Many cause active harm.

I discovered the online forums 18 months ago after I had withdrawn from Temazepam without any idea how to safely taper. This led to experience in an NHS hospital which had been so institutionally abusive, but that I will not recount here, that it was worse than anything I have ever lived though in my entire life. Up to this point I had had absolutely no idea that my body was dependent on the medication, let alone that it was the cause of my disability. I researched the internet on the advice of an unusually well informed GP who lived in the same village as me and who knew benzodiazepines to be damaging. Only then did I finally discover the Facebook groups and internet resources. It was then I realised what had been happening to me.

It has taken over a year of being totally bedbound to withdraw from the remaining diazepam with no NHS help whatsoever. I have needed 24/7 care. At times I could not talk, write an email, walk or lift my head. I have had sensitivities to smell, light and sound. I have experienced seizure like symptoms, paresthesia, teeth zaps and temporary loss of my sight and memory. I have gained four stone in weight and lost my home due to it being unsuitable for mobility. I have now been off the benzos for a month and am still suffering acutely and am unable to walk unaided. This is especially hard because I used to be a dancer.

My physical symptoms may be difficult to endure but just as Professor Ashton describes in the Benzodiazpine Medical Disaster many psychological symptoms have disappeared. It is now absolutely clear I have suffered needlessly for all these years.    A doctor once said regarding my diagnosis of having the capabilities of a four year old child that one day we would “look back and laugh”. I now know the cause and that it has caused horror within my family not comedy.

The help many are often offered when they approach their GPs is a local addiction centres for people using illicit drugs which is not only inappropriate but dangerous since benzodiazepines withdrawal requires a thorough understanding of physical dependence (which is quite different to addiction).  As outlined by Professor Ashton and Professor Lader slow tapering is essential. Abrupt cessation can be fatal.  Shane Kenny has made a documentary called the “Benzodiazpine Medical Disaster” and there is an excellent documentary viewable on YouTube from the USA called “As Prescribed”. People are uploading their own videos to you tube in desperation.

Despite (limited) efforts from the British Medical Association to highlight this suffering there is an unwillingness on behalf of the establishment to really hear the voices of those harmed. The level of suffering is beyond description. I have started a petition for an Independent Inquiry to the Health Select Committee.

There are people walking around who are long term users of prescribed benzodiazepines who have no idea that they are experiencing symptoms that are in fact tolerance withdrawal from the very tablets they are taking to make them better. Most confuse withdrawal symptoms with the drug helping them. They think that because they do not ‘crave’ the tablets that they are not dependent. Unfortunately doctors also make this mistake.

The people who most need to be heard are genuinely often too cognitively compromised to write an email to Panorama and there is no advocacy whatsoever for us.   The scientific research has been around for over forty years, BBC Panorama, ITV and the national press have all covered it and yet the medical establishment has not taken it on board.

To cope with a disability caused by a medical system we trusted is bad enough but to have to battle fruitlessly to have our situation represented at all – let alone accurately represented, is beyond what humans should have to endure.  We have often lost everything.  Careers, relationships even our homes. This in addition to suffering severe neurological and often physical pain.  All this for a tablet that has been shown to have no clinical efficacy whatsoever after two weeks of use.

We are a forgotten group, victims of a medical disaster comparable to Thalidomide.

We urgently need another Panorama to accurately show the sheer pain of the lives destroyed by the benzodiazpine medical disaster and describe the brain damage inflicted upon us and then denied.

Yours sincerely

Benzoblogger101

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