I live in Scotland and am a campaigner for Government action on prescribed drug dependence, withdrawal and resulting iatrogenic harms. I am in bed most of the time. I tell my story in the hope that it might help others understand what may be happening to them and to help them avoid the many mistakes I have made and the awful price I have paid for trusting the medical profession.
I was born in 1954. I was an extremely sensitive child and a great worrier. I had some years of childhood illnesses and in my teenage years I started to get depressed. Problems at home, high achiever at school and worries about body image all combined to make me deeply unhappy. My mum suffered from depression and this affected me greatly. By age 20 I had started having myoclonic jerks (possibly caused by stress) and for these I was prescribed the benzodiazepine, Nitrazepam. There were no patient information leaflets in those days so I knew nothing about the drug. As soon as I started taking the drug I became extremely hyperactive, almost stopped eating and within two months had lost a quarter of my body weight. I was pleased, I had never had much energy and I hated being too fat. My mother was horrified. I then tried to take my own life, swallowing the bottle of tablets, thinking I would never waken up again. It was a desperate action and i had no thought whatsoever as to the effect on my family, I just wanted to die. I had no idea what was wrong with me. My life was in tatters and I was referred to psychiatry.
In those days, medication was not the first option and I went to group therapy and individual therapy but nothing helped. I continued to be extremely suicidal. I do not remember there being any waiting lists and hospital beds seemed readily available. The hospitals were large, and the wards the same, I was so depressed I didn’t care. At one point I was told I would spend the rest of my life in hospital as happened in those days. At no point did any doctor realise that I had had an adverse reaction to Nitrazepam and I certainly had no idea. After a few years I was put on antidepressants, at first the old tricyclics. Anafranil caused epileptic fits but Doxepin I could tolerate. However, my mental health continued to deteriorate and there were many more suicide attempts and many more hospital admissions. I was barely functional. I married a fellow patent who was functioning better than me. However, the stress of his illness on me was too much to bear and after 10 years we divorced.
I gradually learned all about the immense risks associated with benzodiazepines but I still had absolutely no idea how much the drug was affecting me. In my 30s and 40s things gradually got somewhat better. I continued on the drugs, Nitrazepam and various antidepressants, moving to SSRIs. Again there were many I could not tolerate but eventually settled on Effexor from 2000 onwards. Every day of my life was a huge struggle, my physical and cognitive functioning were impaired but I did not know it was the Nitrazepam. It was now firmly ingrained in my mind that I suffered from depression and that this depression was intractable. I believed it was the result of genetics and biochemistry or maybe it was just me. Psychiatry did not disagree. My grandfather had taken his own life, my mother had been depressed for many years. Despite the daily struggles, I went back to University and had a fairly good research career in the NHS for about 20 years. I gradually grew in confidence and was promoted several times. However, I felt alone and lonely every single day, having absolutely no idea that this was indeed a side effect of the Nitrazepam. I thought it was depression, I attributed everything to depression, it had become ingrained in my mind.
After retiring from work in 2012, I changed GP practice and was advised to stop taking Nitrazepam. I was given no tapering advice. I therefore tapered on my own over three months in 2013. I had only been on 5 mg and that seemed reasonable to me. Functioning became even more difficult but again I failed to link this to drug withdrawal. Six months passed following the end of my taper before I became acutely unwell and bedridden. I cannot begin to describe the torture that I then endured for several years. My brain had stopped communicating properly with my body, and most of my body was numb. My legs and arms were worst affected and movement was difficult. I felt as though I was dying and had no idea the feeling was emanating from my brain. For three months I saw no-one and I could not seek medical help. I could not stand light or sound, could not use the telephone, could barely stand for more than a few minutes. Only managed to get to the toilet and get something to eat which was a huge struggle. Depersonalisation and derealisation were terrible. Memory was shot to pieces, had little awareness of the passage of time. I slept a great deal.
Early in 2014, I started visiting doctors. GPs did not know what was wrong. Psychiatrist who knew me well said it was nothing to do with the drugs and to “think of it as chronic fatigue syndrome”. I knew he was lying. I did not see a doctor again for three years. I was too ill to visit the surgery and in any case they seemed to have no idea or they did not want to know. I remained bedridden for the most part. It was 18 months before I could sit up without pillows propping up my head, My body was wracked with nerve pain. It was two years before I walked outside on my own. Early in 2017, I tried to force myself to walk. The pressure on my brain was such that I experienced two massive jolts, one at the front of my brain and another at the back. The pressure caused my left eye to bleed and my eyesight is now damaged. I now needed a walking frame and wheelchair when outside the house. In 2014, I decided to taper off 225 mg Effexor over 10 months, as I now realised that most of my symptoms of depression were side effects of Nitrazepam. I did this without medical advice. I do not know if this has prolonged my withdrawal symptoms from Nitrazepam. No new symptoms emerged as a result of tapering Effexor but I was very ill and would not have noticed minor changes.
In 2017, I consulted a neurologist privately who said my horrendous ordeal was nothing to do with the drugs. He was lying. Later in the year, I saw an NHS neurologist and he admitted that all my symptoms were due to the shock of coming off Nitrazepam but his letter stated that I had been suffering from chronic fatigue syndrome and now had neurological functional disorder. I was adamant I wanted an accurate diagnosis linking my symptoms to the drug. I requested an out of region referral to Prof David Healy in Wales. Instead I was referred to the local Substance Misuse Service. There, I received a full and frank acknowledgement that my symptoms were indeed entirely consistent with protracted benzodiazepine withdrawal syndrome, though I much prefer the term benzodiazepine related brain injury, for that is what it is. I have fought long and hard for this and it should never have been necessary. I have known since April 2014 what was wrong with me and so have my doctors. My only sources of support have been benzobuddies.org and Beating Benzos Facebook group plus my ever supportive friends and family. I would not wish my ordeal on anyone. I hope that others may learn from the way my life has been blighted from the age of 20, because I was trusting of medical advice.
My website outlines my story in more detail and I blog regularly on the ongoing campaign on prescribed drug dependence. https://nevertrustadoctor.wordpress.com