Symptoms: Brain zaps, emotional blunting, sexual dysfunction, cognitive impairment, insomnia, depersonalization/derealization, suicidal ideation, neuropathy, severe anxiety/panic, anhedonia, GI disturbances
Medical History and Psychotropic Drug Prescribing
My name is Fiona French. I live in Scotland and I am in my early seventies. My history spans 50 years, but many of my experiences remain relevant. I have been active in the prescribed harm online community for over a decade.
In 1975, I was a student, feeling lonely and low. For over a year prior to that, I had been experiencing muscle spasms, mainly in my arms but also my legs. These spasms were accompanied by electrical zaps in my brain, which were very unpleasant and happened daily. I was referred to neurology, had an EEG, and was given the diagnosis “myoclonic epilepsy.” I was prescribed the benzodiazepine Nitrazepam (5mg). This drug is no longer widely prescribed.
I started to take Nitrazepam whilst away from home, working in a holiday camp for the summer. I knew there were some side effects, sedation being my particular concern. I assumed that if I experienced adverse effects, I would stop taking the drug. However, my reaction to the drug was paradoxical in nature, and I had no idea I was suffering from adverse drug effects. I became hyperactive, lost my appetite, and quickly started to lose weight whilst being completely unaware of just how unwell I was becoming. By the end of the summer, I was a physical, emotional, and psychological wreck. On returning to my studies, it was obvious to me that I could not continue. In a moment of desperation, I swallowed the bottle of pills, hoping that I would never wake up. I had never thought of suicide before this moment.
The local GP visited me at home and I was referred to psychiatry because of the suicide attempt. No thought was given to the effects of the benzodiazepines. In the 1970s they were commonly prescribed; there were no warnings about drug dependence or the dreadful withdrawal problems. Psychiatrists then simply assumed my difficulties were psychological and emotional. I attended a day hospital five days a week for a year, where the focus was on group talking therapy and occupational therapy. In my very unwell state, I duly complied, thinking I had some sort of psychological disorder unrelated to benzodiazepines. Over the next few years I had a variety of jobs, always ending in tears when I had to give them up. I felt I was a failure and really didn’t understand what was wrong with me.
As my condition was no better, I was transferred to another psychiatrist in 1979. It was under his “care” that I consumed multiple antidepressants—too many to recall—without informed consent. There were multiple drug switches and polydrugging as he desperately tried to find something that would “help.” I was offered lithium, which I refused. The whole process had worsened my health, and at one stage a different psychiatrist told me I might spend the rest of my life in a psychiatric institution. He wanted to detain me under the Mental Health Act and offered me ECT, which I refused. I was in an old asylum-type hospital at the time, where many patients had been there for decades. After my final and most serious suicide attempt, I was again transferred to another psychiatrist—this time one who offered psychotherapy. However, he continued to maintain the antidepressant prescribing in my case. I don’t think it ever occurred to him that the drugs were making me very unwell. He switched me to Effexor when I hit another bad patch in my life.
Prior to that, I had had a number of inpatient stays, mostly due to adverse reactions to antidepressants. The first was clomipramine, a tricyclic, which caused fits. At that point my benzodiazepine dosage was increased. I was referred back to neurology, where I saw a senior trainee neurologist who was the only doctor who actually suggested the benzodiazepines could be making me worse. This resulted in my attempting to taper off Nitrazepam. However, there was no safe tapering advice in the 1980s. The brain zaps started again and I assumed this was due to my original condition of “myoclonic epilepsy,” though of course it could have been withdrawal symptoms, unknown to me at the time.
Later in the 1980s, documentaries were broadcast on national TV regarding the awful risks of drug dependence and withdrawal symptoms. One of those was called “Ada vs Ativan” and is still available on YouTube. In 1988, new guidance was introduced in the UK recommending short-term prescribing for benzodiazepines. This was discussed with me by my GP, but unfortunately I was informed that my condition was exempt from these guidelines and it was advisable to stay on benzodiazepines. I therefore continued to take the drug daily, albeit unwittingly, whilst also continuing to take antidepressants for my “depressive disorder.”
In 1988, I decided to return to university. This time I was successful and found a career that suited me in research, mainly working in the NHS alongside the medical profession. However, everything I did was an enormous struggle. I was chronically fatigued, cognitively impaired, and of course my sexual function was also negatively impacted. I had reported sexual dysfunction to a psychiatrist in the 1980s and his response was to offer sexual counselling, with no mention of drug effects or discussion of tapering. It was simply assumed that I needed antidepressants and benzodiazepines. Eventually I had to take early retirement on health grounds.
Nitrazepam and Effexor: Tapering and Withdrawal Injury
After retirement in 2012, I changed GP practice to one nearer my home. I had been with the same practice for 40 years. I was invited for a medication review, and the GP suggested I think about coming off benzodiazepines. I was terrified at the thought of it. However, I decided to start a taper, using a copy of the Ashton Manual which had been in my house for years. I assumed that any attempt to taper would be unsuccessful and I would have to resume taking the drugs. I didn’t think I would actually stop taking them.
I tapered over three months in 2013, from 5mg, reducing by 25% each month. To my surprise, I did not find the taper particularly difficult, although I was aware of “slowing down” and my cognition appeared to be worse. I was not alarmed by this. I continued to function for six months after taper completion. The most obvious effect at that stage was constant sexual arousal—rather shocking after decades of little in the way of sexual feelings. I knew this was a rebound effect of drug withdrawal.
I was in no way prepared for what happened next. In September 2013, I hit acute withdrawal six months after my taper had ended. I was hit with an avalanche of disabling and cruel withdrawal effects and rendered mostly bedridden for several years. Unable to tolerate light, sound, or water from the shower on my skin, there was nerve pain throughout my body and I was only able to stand for five or ten minutes. I had intolerable head pressure and could not process written text, with similar problems processing speech. I attended my GP, who was baffled and thought “depression.” I was referred back to my psychiatrist, who was also baffled and diagnosed “chronic fatigue syndrome”—but not a benzodiazepine withdrawal injury. I was appalled. I did not consult again for three years. During this time, I decided—perhaps unwisely—to taper off Effexor, which I did over eight months. This tapering process did not appear to worsen my situation, as there were no new symptoms.
By 2017, I was in a desperate state and thought I was going to lose the use of my legs. I could not sit up for any length of time and had considerable difficulty walking. I sought a consultation with neurology, where I was diagnosed with “functional neurological disorder”—again unrelated to drug withdrawal. At this stage I employed help in the home and was taken out in a wheelchair. I gradually moved to using a rollator before eventually walking independently again. In 2018, I had a bleed behind my left eye and have now lost much of the central vision in that eye.
My quality of life is considerably diminished. I am chronically fatigued, still cognitively impaired, and reading remains a struggle. I find it difficult to focus on television. I have bladder and bowel problems which make it necessary to be within easy reach of a toilet. My sexual function is nonexistent.
Was Drug Withdrawal a Mistake?
From the point of view of my health state, the answer is yes. However, I am no longer bound to prescribers, scripts, and drugs after decades of hating that situation. More importantly, I finally know the full truth about my life. I did not have a depressive disorder—I was harmed by benzodiazepines, then antidepressants. I was not a failure. I was poisoned by prescribed drugs.