My own symptoms of adverse reactions to benzos. A Pandora’s box.

The former Public Health Minister Anne Milton, stated on BBC Radio 4 “Face the Facts” on 27 July 2011:

“I’ve met people who’ve been addicted to benzodiazepines for 20 or 30 years – wrecked their lives, wrecked their jobs, wrecked their families. It’s a silent addiction. We all know about illegal drugs, we all know about alcohol, we don’t know about this group… I think there has been some denial of the problem and I think that when you’re talking about drugs that are legally, albeit unwisely, prescribed causing a problem – you know it’s never really fitted anywhere, nobody wanted to grab hold of it – certainly not in denial now. We are going to get a grip of this and it needs to be dealt with on a number of different fronts, there’s no doubt about that… I’m taking this very seriously. It’s an issue that’s fallen through the cracks. We want to make sure that training and awareness is raised so that GPs know how to prescribe well and then we need to make sure that we’ve got the right services in place to give them the help and support they need to get off these drugs and get back and enjoy lives as they should be able to.”

More than two years later, on 23 October 2013, the then Prime Minister David Cameron stated in the House of Commons that those affected by the failures referred to by Anne Milton were suffering from “a terrible affliction”.

More than six years later, nothing has been done.

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It is normal for victims of the benzodiazepine medical disaster to suffer a complex myriad of symptoms, sometimes up to forty symptoms or more all occurring simultaneously.

I have compiled an abridged list of my own symptoms whilst on benzos and also whilst tapering off them, not to moan, but to attempt to convey to those who have not experienced this how disabling benzodiazepines can be.

What I find so staggering is that my symptoms were put down to stress of childhood trauma.

Our culture seems obsessed by putting physical complaints down to somanticisation and inherently trusting of tablets sold and over marketed by pharmaceutical companies for profit.

The collective experiences of the benzo victims calls into question the entire medical model. With so much money and vested interests at stake is it perhaps not surprising that this issue has not yet been resolved. Barry Haslam was not wrong when he referred to this disaster as a “Pandora’s box”.

Symptoms during ‘tolerance’. 2002- 2016

Total inability to live independently.

Total disinhibition.

Extreme fatigue.

Abilities and emotions of a four year old child.

High anxiety.

Constant chest and UTI infections

Memory problems.

Anger.

Euphoria.

Insomnia.

Night terrors.

Sleep paralysis.

Benzodiazepine induced PTSD

Constant suicidality

Symptoms during the taper June 2016 – Sept 2017

PTSD and depression abated once I started tapering. Despite the following:

Loss of vision/ sight.

Sinus problems.

Feelings tight strangulation in neck.

Pains in calves and knees.

Inability to stand or walk.

Inability to carry objects even such as a plate or cup.

Feeling of being “all at sea” with floor moving up and down and world spinning.

Painful weak wrists.

Front bottom teeth feeling sharp and intrusive with electric shock feelings.

Very sore neck.

Dizzy.

Unable to walk.

Paresthesia

Extreme and painful sensitivity to noise.

Extreme and painful sensitivity to movement.

Stomach problems.

Multiple chemical sensitivities to household products, paints and foods. (This symptom has been more difficult to cope with than I am able to convey)

Chronic cough.

Headaches.

Inability to lift head due to weakness (bed bound)

Electric shock feelings in limbs.

Cheese wire headaches.

Inability to plan, understand or manage independently in any way.

Inability to understand technology such as even writing e mails at times.

Inability to write by hand at times.

Massive weight gain (four stone)

Constant chest infections, ear infections etc

24/7 care needed.

Acute stage. Sept 2017 to the present day.

in extemis:

Cluster and cheesewire headaches.

Floor moving up and down.

Room spinning.

Loss of balance.

Extreme fatigue.

Teeth pain and electric shock pain in jaw. Teeth feeling oversized and sharp.

Sinus issues and chesty cough.

Dry cough.

Swollen tongue and throat making breathing difficult.

Metallic taste in mouth.

Pains in legs.

Pains in knees.

Extreme and painful sensitivity to noise.

Extreme and painful sensitivity to movement.

Stomach problems.

Electric shocks in limbs.

Multiple chemical sensitivities to household products and certain foods.

Excruciating muscle tightness that almost feels as though bones will dislocate. This occurs between the elbow and shoulder and between the knees and hip.

Crawling on skin.

Inability to walk.

When I first started benzodiazepines it was clear there were adverse reactions from the start. I’d gone to see my GP in Brussels whose office was in the same road as my apartment. I’d stated I was a bit anxious about my new job but I really did not want to take an SSRI due to an extreme adverse reaction to SSRIs, in particular venlafaxine from which I’d been cold turkeyed off at the start of my final year of university. The venlafaxine withdrawel syndrome had resulted in seizures and a long recovery stage which in hindsight was probably even still affecting me at the start of my career in Brussels. The GP stated that benzodiazepines were much “safer” and “better” and prescribed Xanax.

I probably got benefit from my very first tablet, possibly even then first two or three but I very rapidly started exhibiting adverse reactions. My fatigue was extreme and I even needed to take a nap in the office. My balance was off whack and I became clumsy. I remember walking through the carriage on the commute home from Strasbourg. I was literally so off balance I was falling onto the seats on either side of the carriage. Onlookers assumed I was drunk. I had not drunk a thing. I noticed my mood declining and changes in me were noticed by colleagues. I found organisational skills just seemed to stop, as a parliamentary assistant this was not good. One colleague even chatted to me about it in cafe in Strasbourg. Meanwhile my boss stated to me that I’d gone from the best employee to the worst in two weeks. A new intern had joined during that time so some people put it down to that. I remember that I returned to my GP and stated i was falling apart and now couldn’t even sleep. She prescribed zopliclone aswell. I was now taking two benzos. Within a few weeks I was struggling to look after myself. I then became suicidal and took two overdoses. One of those resulted in me requesting to be an inpatient which was a terrible experience. Sometime afterwards I decided to stop the Xanax and thought nothing of it. My health declined even further and I remember projectile vomiting in the office in Strasbourg. My boss asked me if I’d been drunk. I had not been drunk in any way shape or form. I called my then psychotherapist Dr Herschkobitz who found my long list of physical symptoms very hard to believe. I could not believe I was suffering so much and not receiving any help. It was like no one believed me. A colleague wondered if I’d contracted legionnaires disease because there had been an outbreak of that in Parliament. But I got tested and was clear from that. I desperately needed to sleep but I had no diagnosis or valid reason to go home. I went and slept anyway. I had to. I now see I was in withdrawal from the Xanax and zopliclone. The dosages were fluctuating all the time as I was commuting a lot and probably seeing three separate GPs. One concluded my physical symptoms were anxiety so the benzodiazepines were reinstated. By this stage it was clear to me holding down my job was going to be impossible. I spoke to my boss and we agreed I’d not renew my contract. I was relieved.

By the time I arrived back in the UK I was in a dreadful physical and mental state. It did not occur to me for one second that the benzodiazepines were to blame because I had stopped taking them. I knew nothing about withdrawal syndromes.

I was not recovering physically and I felt absolutely desperate. I went to see my GP in the UK. I did tell him about the Xanax and zopliclone but just as with my venlafaxine experience he did not recognise the withdrawal syndrome or adverse reactions. He was certain I was anxious. Given that anxiety is a withdrawal effect I’m sure I was. I’d lost my career and was living with my mother. I had no idea what was happening to me. I’m sure I had every reason to be anxious. He stated that Xanax and zopliclone were not something that were prescribed in the UK. He said diazepam was a much better benzodiazepine. Bearing in mind in had withdrawn from Xanax and zopliclone by this point I really needed now to say off all benzodiazepines. I could have done with knowing I was suffering from the syndrome. I remember the GP asking me how long I’d been off them. I could not recall. I was so all over the place I had not really kept a record. But I was off them long enough though for it to be something I could not recall.

And in a blink of an eye my life was ruined. He wrote out a prescription for diazepam.

Tolerance years.

The years that flowed were bleak. I put on a huge amount of weight and became seriously obese. I existed in bed 24/7. I had given up on going back to the GPs. Every time I went in with a physical complaint they said that physical complaint either wasn’t possible or was a result of anxiety. I now see that all those physical issues were sign of tolerance withdawal from benzodiazepines. I just kept deteriorating. A family member was now also on benzodiazepines. A truly hellish situation developed. We were both extremely depressed, physically ill and desperate.

I wondered if I had ME. I slipped up and dislocated my shoulder irony of ironies whilst running for the phone to speak to my GP. After this I was placed on opioid painkillers which are not supposed to be taken in conjunction with benzodiazepines. I became so so so depressed and suicidal. It was a bleak bleak time caused by the interaction of bnzodiazpines with opioid painkillers.

A helpline in London suggested I see a psychiatrist called bob Johnson.

I was relieved to see him. He was very very understanding about childhood trauma which is more than mainstream services ever had been but he was so keen to prove his own theories on childhood trauma that my real issue (the Benzodiazepine tolerance withdrawal) was overlooked. Bob Johnson diagnosed me as only having the abilities of a four year old child. Which by this stage was true. The benzodiazepines had renedered me totally trusting, open, disinhibited, vulnerable because of all the undiagnosed physical problems and living with someone in the same state. I was like a child. I was already in the torturous benzo state so many others describe by that point. Horrifically for me Bob Johnson believed all the physical stuff to be somanticisation. He also encouraged my then GP who I’ll call Dr Pharma that I should not receive practical support for independent living lest I became “dependent”. He was not referring to dependency to Benzodiazepine medications. He meant unhealthy reliance on others. It hurts so much looking back. I’d run my own flat in Brussels, I’d lived in NYC and managed all throughout Cambridge. I had experienced difficulty of course during the venlafaxine withdrawal in my final year when I found looking after myself impossible. I’d felt childlike then but only fleetingly. Since benzos I felt like that all the time. Bob Johnson had written a book called unsafe at any dose. Yet he stated benzos weee the least worst of the medications I could have been on. He did not at any point recognise signs of tolerance withdrawal. He was absolutely obsessed in proving his own theories on childhood trauma and I frankly became his guinea pig.

So with Dr Pharma even though my time with Bob Johnson had ended we were working from Bob Johnsons awful assumptions. I tried to carry forward the positive sides of what he’d done with the childhood trauma stuff but the negatives were that he had almost had me branded as someone who should not receive practical help as I was over reliant on others. I was really ill. I needed help but his opinion tainted my further treatment. There had been some highly unorthodox behaviour by Bob Johnson that I will not go into here.

Then subsequent specialists also seemed to follow on from Bob Johnson. Zulueta and gene cos. By this time I was in hospital almost continually with overdoses. Having read the research about gaba I can see why it was impossible to just stop doing that. I can see why the home situation deteriorated as it did. But I wonder if any of the gps I trusted will ever even read the research. The idea that they might never take the time to do so is very hard for me to cope with. I have been misunderstood on a profound level because of these tablets and so was a family member.

Dr Pharma stated he would not help me if I didn’t show signs of getting better. I really could not have tried any harder. I may have looked perfectly normal but I was severely ill from tolerance withdrawal. The overdosing was not ever going to stop with will power alone. I needed to be referred to Hathor Ashton’s clinic. I needed to taper using the Ashton manual. But we didn’t know that it existed or that it was necessary.

I was brilliant at looking competent. Looking back I have no idea ho I managed to carry on. I was being tortured mind and body by the benzos even back then.. I seemed so normal sometimes but I was cognitively and physically really severely struggling.

In this state I was deregistered. And the subsequent GP raised my dose to one hundred mg per day. I can barely remember past that. A good life was still perfectly possible until that day of deregistration. That day destroyed everything I ever dreamt of or worked for.

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