7. Patient voices – examples of withdrawal experiences from real life

The stories that follow have been offered by volunteers with the intention of helping therapists understand some possible experiences some people may have when taking or withdrawing from psychiatric drugs. These experiences are not presented as being representative, they are rather offered as examples that may illuminate some of the complexities involved. The people here are described as ‘patients’ as their stories are primarily about the impact of the drugs they were prescribed. Suggestions for further reading are provided at the end of the section.

Sarah’s story

I took an SSRI antidepressant for 17 years. The reasons I ended up staying on the drug for that long are threefold:

a. I was lied to and told I had a chemical imbalance in my brain, so, until I investigated and challenged this ‘diagnosis’, I believed I needed the drug.
b. Whenever I tried to stop taking it and went into withdrawal, I was told that the drug was not addictive so my symptoms were an indication of the extent of my illness.
c. The only place to get advice on tapering was from the internet. This was sporadic and inaccurate and so my tapering efforts constantly failed.

The withdrawal symptoms I experienced were, in the early days: nausea, vertigo, IBS, weight loss, muscle tension, brain zaps, palpitations and insomnia. Each time I tried to come off the drug by tapering more and more slowly, those withdrawal effects got stronger as key bodily systems were affected by the absence of the drug.

As time went on my nervous system became more and more hyper vigilant as I felt unsafe, finding danger everywhere. I developed a number of phobic reactions to external and internal stimuli – e.g. a hot flush would be followed by a wave of fear. Each attempt at withdrawing sent me into a state of shock, in effect, to the point where I developed a movement disorder and symptoms of trauma. When I finally completely stopped the drug, it took four years for the majority of the symptoms to subside.

Peter’s story

I had a decade of mixing and matching anti-psychotic, antidepressant and mood stabilising medications from my late teens to late twenties. During my early twenties the consultant psychiatrist I saw regularly had prescribed Largactil [editor’s note: an antipsychotic], he then withdrew it in favour of another medication when I said it wasn’t effective.

Firstly, I would say that the advice around withdrawing was sparse and effects that I might encounter never discussed. What ensued was a couple of weeks that I can only describe as ‘scary’ that saw me become extremely paranoid, have visual hallucinations and physical sensations.

My paranoia was based around the fact I was relaying information back to my consultant and on one occasion to an on-call duty psychiatrist that my wife had called because she was so worried. The information I relayed was dismissed as me ‘lying’ ‘exaggerating’ and ‘making it up’.

I was explaining that in my peripheral vision I could see a dark figure and it seemed to be following me everywhere I was going, during this time I was experiencing repeated and extreme panic attacks. I was also getting repeated sensations in my brain, from temple to temple that I can only describe as electric shocks, these were extremely frightening, and I was convinced I was going to die.

My trust in the doctor and his profession was shaken at a time that I was very unwell, this eventually led to me taking a non-medication approach to my mental health, something that has proved successful as I look back on a decade of wellness but something my consultant did not support.

Molly’s story

I was under the care of a psychiatrist in the community mental health team. I was taking a combination of Mirtazapine [editor’s note: an antidepressant] and Trazodone [editor’s note: an antidepressant which is also a sedative] with Zopiclone [editor’s note: a ‘Z’-drug, similar to a benzodiazepine, induces sleep] when I became tired of the side effects while the psychiatrist was on holiday and chose to stop taking the first two.

Within a couple of days, I had started to become increasingly ‘up’ and became hypomanic nudging into mania with symptoms of psychosis two days later. I became convinced my psychiatrist and the mental health team were conspiring to have me sectioned and managed to persuade my psychiatrist to discharge me although I was exhibiting pressured speech.

My therapist, who was separate from the mental health team but was funded by the CCG, was someone I confided in and who tried to get support from my psychiatrist by calling him directly. When we discussed it afterwards, he said he found the lack of support difficult to handle as he watched me spiraling out of control.

In the end I ran away to Paris and ‘snapped out’ of the episode after putting my safety at risk several times. The therapist had to manage the repercussions in terms of the impact on my mental health but also rebuilding my trust in medication, which I was cautious about taking with a fear of withdrawal if I ever had to stop.

Angela’s story

In 2015 I was advised by my GP to try 10mg of Nortriptyline [editor’s note: a tricyclic antidepressant] to see if it helped reduce the frequency of my migraines. It didn’t help so after three months I wanted to wean off and asked my GP for it in liquid form so that I could do it gradually.

My GP refused saying the liquid was only licensed for elderly patients and suggested I cut the 10mg tablet in half for a week, then into quarters for a week, then a quarter every other day for a week and stop. I did this regime however when I stopped my nervous system went into chaos.

I felt extremely anxious, depressed, angry and irrational and couldn’t eat or sleep. I went back to my GP and asked whether this was a reaction to stopping the medicine, but he said not on the low dose you were on! He suggested that I was having a relapse into an anxious state as I have had a history of anxiety due to PTSD although never to this extent before!

He gave me 14 days prescription of 3.75mg Zopiclone sleeping tablet without warning about how addictive they were if used for more than a few nights at a time! After two weeks I hadn’t improved and was given another 14 days prescription of Zopiclone. By week four I had reached tolerance and needed to double the dose to sleep. The following day I had a bad reaction to the drug and my body became numb all over and I was having continuous, uncontrollable body jerking and finally I collapsed, and the paramedics were called.

It was only then that I googled Zopiclone and read the many articles warning about the high risk
of dependency and the department of health’s warning to all GPs that Zopiclone and other Benzos should not be taken for more than two weeks! To cut a long story short, I received no help or sympathy from my GP and had to plan my own escape from the hell I found myself in. The only help I could find was the Bristol drug project helpline and the one in Camden. I used the Ashton manual and tried reducing 10% of Zopiclone but the withdrawal symptoms were so bad that I couldn’t get out of bed. The helplines and the Ashton manual recommended swapping to Valium, which has a longer half-life, compared with Zopiclone’s very short half-life and would be easier to wean off. I made the swap and started weaning off at 10% every two weeks but still had horrendous withdrawal symptoms, I became housebound and couldn’t work or drive for five months due to shaking most of the time. It was the worst time of my life and has taken me a couple of years to get my life back on track.

Majid’s story

I have been a service user and carer for over 15 years. Initially my diagnoses was depression and anxiety and I was treated with venlafaxine [editor’s note: an SNRI antidepressant].

Over the years my illness was then changed to personality disorder with severe depression. Over 10 years I have never seen the same consultant twice, therefore, no one knew how I was doing. The side effects made me deteriorate with little sleep. I would be mentally exhausted and sleep on benches in the park or on settees when visiting family. I was soon banned going to houses due to me not looking after myself and sleeping everywhere.

The medications made me put on weight and I was outgrowing my clothes. I can remember that I found walking up three steps a struggle and would be out of breath. I would often feel dizzy and faint, (and thought this was normal). Yet I was told by the team to carry on taking the medicines.

I took venlafaxine for 10 years and tried to come off them twice but was advised to stay on them by a locum psychiatrist and a support worker. The medicine in the long-run made me more alert and I would often be awake till 5am in the morning, which ruined my relationship with my family.

When I eventually saw a psychologist, she told me that I needed ‘tweaking up’ and would attend my psychiatric appointment. The problem was identified that I would say I am fine (because we were told in group therapy to be positive and I had no insight into my illness – 10 years made it a normality).

My psychologist argued my case, but the psychiatrist was saying that I was not taking my medication! (Not true and this was the first time he saw me but looked at history notes) that is why I was behaving manic. After another appointment with the psychiatrist and psychologist he changed my tablets to mirtazapine. I had no tapering of the other drug just a straight swap and had to endure sweating sleeplessness, panic attacks, anxiety attacks, paranoia and I could not trust anyone in my family.

I was later told the side effects of venlafaxine had made me manic. I am now on a different medication but still have issues with people and have flashbacks of how I was. I am more relaxed with this medication but would like to come off them so I can concentrate and do more things, because the medications make me tired and forgetful. Since I am calm, the family is calm and not alert.

Medicines are dangerous if not checked upon and can make you do stupid things which you have no control over. Venlafaxine was making me suicidal. Thank Allah I am off them and in more control of my life. Due to this I have lost my benefits and had housing eviction letters because I was not filling in the forms on time (poor concentration/sleep).

I am now diagnosed with general anxiety and depression. Not personality disorder or Bipolar which they were thinking of labelling me. It’s amazing what medicines can do to you.

Suggestions for further reading

i. International survey into withdrawal from psychiatric drugs¹

In Sep 2017 the All-Party Parliamentary Group for Prescribed Drug Dependence, in conjunction with researchers at the University of Roehampton, undertook one of the largest direct-to-consumer international surveys of its kind into withdrawal from psychiatric drugs (antidepressants, antipsychotics and benzodiazepines). There were approximately 1,700 respondents, 319 of whom were taking antidepressants living in the UK. This report summarises both the quantitative and qualitative data on those in the UK taking antidepressants (319) who reported their withdrawal experience.

ii. Petition submissions – Scotland & Wales

One hundred and fifty-eight personal accounts of people impacted by prescribed drug dependence and withdrawal (specifically for antidepressants and benzodiazepines) were submitted in response to two petitions lodged with parliamentary Petitions Committees in Scotland² and Wales³ in 2017. These submissions have also been analysed and summarised in a report.⁴