Raising awareness of protracted withdrawal -a mental health nurse’s story

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 During my mental health nursing studies there was a focus on the biological model for depression and the role of ‘antidepressants’ was derived from the chemical imbalance theory of depression. Later we learned that this theory is yet unproven and I for one am hugely sceptical. My own experience has further embedded my views that depression is very much to do with the environment and other social factors that surround us, as well as the ability to cope with life’s hardships and previous past trauma. None of this should be pathologized, instead I believe the focus should lie in compassionate understanding of what has happened, the use of psychological methods of support, adaptation of the environment and family support.

During my early years of working this is very much what I saw in every day psychiatric practice -a psychiatric diagnosis being made, followed by prescriptions for psychotropic medication.

My own story: Starting ‘antidepressants’

 It was 2010 when I was a relatively new mental health nurse working in my first senior post in the UK on a busy psychiatric ward that I experienced some work-related stress.

I have always experienced a degree of social shyness throughout my life and was slightly on the neurotic anxious side. The new working environment brought on an extra level of stress and through my nurse training, I understood drugs like SSRIs to be safe and effective. I went to my GP and asked for a prescription and started on Citalopram 10mg. I never questioned its long-term use, nor did I foresee any difficulties getting off this drug in the future. During the first few weeks of taking Citalopram, I noticed I felt considerably more anxious which led me to increase the dose to 20mg shortly after.

Over about two to three months I did see some improvement in my social anxiety and felt new levels of confidence and as a deputy ward matron. Over the months and years this soon changed into a numb type feeling in which I always felt emotionally distant from those around me and couldn’t quite connect with my full range of emotions. I became more fatigued and lost interest in many areas of my life I had once enjoyed such as socialising with friends and going out. After the first couple of years on this medication I started to notice how it affected my romantic relationships and greatly reduced my sex drive and interest in any form of intimacy with my partner at the time. I am lucky to have a very understanding partner with this.

This continued over the coming years. I did not recognise that it was the negative side effects from the drugs, and it was starting to impact on my quality of life. My motivation and energy levels were dramatically reduced, and I could describe it as though I was living in a ‘gold fishbowl’ never fully able to connect with my previous self. But at that time, I did not have this level of awareness. I was not depressed, but I was not living life to the full and I certainly struggled to feel any significant amount of joy or pleasure in my life. These factors became the main motivators to come off citalopram.

First attempt 

It was about 2014/2015 when I made my first attempt to come off citalopram. At the time the guidance was to reduce the dose and stop ‘antidepressants’ over a few weeks. Sadly, my attempt was met with increasing levels of anxiety – far worse than the symptoms I had initially experienced when first prescribed citalopram. It was about 3 weeks after my last dose that I decided to reinstate 20mg of citalopram. I remember waking up at night with panic type feelings soon after re-starting the drug again which reinforced my belief that I must have some kind of biological anxiety condition, so I increased my dose to 30mg. My symptoms resolved over the coming weeks, however yet again I found myself in a state of de-motivation and detached from the things I had once loved and enjoyed.

Over the years I became more fatigued and would often need a nap just to get through the day. I had even started to question whether I had another underlying health condition but at this point never questioned that the drugs could be responsible for how I was feeling.  I was now married, and it was starting to affect the relationship as I showed very little interest in any intimacy and any kind of romantic connection with my husband.

Protracted withdrawal

I continued to take my daily ‘antidepressant’ over the coming years, This time I did it over 4 months; I started my tapering in July 2023 and took my last dose in November 2023. Again, in hindsight this was much too quick, and over the coming months I experienced the most difficult and horrendous time in my life. Initially I had what I would call the ‘honeymoon phase’ – over a few weeks I felt good almost elated with a false sense of euphoria. I now see this as my brain having gone into some kind of shock which resulted in this over excitement and somehow trying to re-balance itself. This lasted for about 8 weeks and abruptly came to a stop in February 2024 when I was hit with the worst depression I had ever experienced, along with an almost constant state of panic and inner terror which I now recognise as being akathisia.

My sleep took a turn for the worse and I ended up with periods of insomnia as well as gut issues which presented like IBS. I also lost a considerable amount of weight and ended up taking several months off work. I became non-functional, relying on my parents and husband to help look after my daughter and to keep things going. The devastation on my family is what pains me the most and I will be forever grateful for the support they gave me during this time. But I was able to advocate for myself as by now I had a wealth of knowledge around withdrawal and this time I recognised that my symptoms were a result of coming off citalopram too quickly and I had de-sensitised my nervous system.

I do wonder without my clinical knowledge and insight, and the advocacy from my family if I could easily have been misdiagnosed with ‘bipolar’ or another ‘mental illness’ which could have resulted in the prescription of more psychiatric drugs.

This time with my growing knowledge and my increased clinical experience I recognised that what I was experiencing was not in fact an underlying disorder, instead it was a severe protracted withdrawal, from a drug my body had become physically dependent on over the years. This realisation brought on a great degree of shock and almost disbelief as I faced up to what I had subjected myself to over the years. I had no idea when I first started to take citalopram that it would be so difficult to stop and that I would experience withdrawal when trying to come off it. I felt a sense of grief and sadness that my former self had become lost along the way during the time I took this drug.

Reinstatement and stabilising

I tried to fight the symptoms in the hope that I would soon heal, however I had a young daughter, and I needed to function. I made the decision to reinstate an SSRI, Fluoxetine and over the coming weeks managed to stabilise and slowly started to function again. I am now back at work as a mental health nurse and fully able to look after my daughter. I am functioning well again, but I have been left with a degree of trauma from what I and my family went through during my withdrawal. I do however hope that my experiences give others validation that they are not alone, and that ‘antidepressant’ withdrawal is very real. My aim is not to spread fear, but instead to provide some hope and optimism.  Now there is more awareness and understanding about ‘antidepressant’ withdrawal, such hardships can be avoided with proper guidance, tapering and education.

My new perspective

I may have been able to ride out the withdrawal I was experiencing however I had to function so made the decision to re-start an SSRI. I am now back in work and enjoying my job and want to raise awareness of psychotropic drug withdrawal, the importance of informed consent for prescribed medication and the role of safe tapering in de-prescribing. I hope to be another clinical voice out there able to validate what others may be going through now I have more of a critical perspective on psychiatry.  I hope stories like mine will reduce misdiagnosis and over prescription of unnecessary psychotropic drugs.  I am not anti-medication, and I feel there is a role for ‘anti-depressants’, however they need to be used and prescribed with a lot more caution; the patient needs to consent after being fully informed about possible side effects and how to safely taper these drugs.

Loss of self and old identify

My antidepressant withdrawal experience has really opened my eyes to a critical way of thinking around psychiatry and medicine as a whole and I only see this as a good thing. I am extremely balanced in my thinking and feel it is very important people speak out about their own personal withdrawal experience.

At times I feel a sense of confusion and almost fear to come off drugs which I have taken for over a decade. I recognise the changes in myself and the false sense of confidence and outgoingness the medication has given me over the years. I have lived under this different identify for so long that I have now almost forgotten who I was before I took an antidepressant as I have spent a lot of my adult life on SSRIs. I have been distanced from my full range of emotions for so long now that I fear I will not be able to cope with their full range. This is why I plan to embed meditation and other forms of holistic methods to support my mental well-being.

The future

In the next couple of years, I aim to make another attempt to stop my antidepressant and feel optimistic with the knowledge I have gained from my self-education, my research as well as my own lived experience.  I feel confident that I will avoid severe protracted withdrawal by tapering much slower this time using the new Maudsley de-prescribing guidelines, allowing my brain and body time to adapt to each dose reduction. I would urge anyone thinking of coming of their antidepressant to refer to this guidance. I understand there is no rush and I never want to go back to the place I was in and most importantly put my family through this, ever.

Hope and determination

I respect anyone’s own personal decision with their prescribed drugs, or whether to take antidepressants but will always advocate for safe tapering. I want to live fully again in the moment, and I want to feel again both the good and the bad. I want to feel alive again and experience all my life has to offer.

Mad in the UK hosts blogs by a diverse group of writers. The opinions expressed are the writers’ own.