Escaping the medication maze and beginning to feel again

There are as many different ways to approach this story as there are stories and tales within the story. This is more of a chronology and a first attempt to begin to put a narrative on a time that defied all logic and almost led me to my death on myriad occasions in myriad ways. It is by no means an exhaustive tale and the number of both contributing and resulting variables is vast. There are many tales yet to be told. They are currently tangled together in a long-confused brain but the hope is that with the writing and the telling begins the unravelling of the confusion.

The evening of June 27th 2023 marked the two year anniversary since I choked down my final offering from psychiatric medication. It was a small quarter of a tablet of lithium – maybe 100mg, maybe 50mg. How lucky I feel to not be able to remember exactly what strengths they come in.

Psychiatry shrank my world

There was a time when I could think of nothing else but pills and prescriptions, pain and panic. Psychiatry shrank my world. It eradicated vision and possibility. It was time consuming and energy consuming. It served as the ultimate distraction. I’ve come across the quote about drugging our poets and prophets but I’d go one step further to ask whether we are drugging our humanity, our very essence and ability to function in the world in any meaningful way.

I was introduced to psychiatric medications following a severe back injury in 2009. A prolapsed disc led to severe spasms and along with anti-inflammatory and pain medications in stepped benzodiazepines to ‘relax the muscles’. ‘Triple therapy’ I believe it was called and thus began my twelve and a half year dalliance with psychotropic substances; from valium to lithium with countless others sandwiched in-between.

I recall the melting feel of the first valium; the ease of the pain and the relaxed feeling that followed and the relief of my back muscles settling. I recall also trying to literally tear my own skin off, self-harm, hospitalisations, suicidal ideation, mood changes, behaviour changes and an angst, agitation and torment deeper than any words can ever do justice to.

Exactly seven weeks after I got injured and began taking medication, I began self-harming. I am not suggesting that benzodiazepines were the single cause, but it is only in the past two years, since stopping medications that I can look at the possibility that they may well have been a contributing factor. During those seven weeks I had gone from being a highly independent, 30 year- old woman in full-time state employment who was training to run a marathon, had a full and active social life with lots of friends and plenty of travel to someone who was suddenly dependant and awaiting surgery, unable to work, unable to socialise, in constant severe pain and almost completely housebound save for medical appointments that someone else had to drive me to. My life as I had known it had all but ended. My mood suffered hugely as a result. One night, seven weeks in, I began a curious cutting of my upper thighs and looked on in a detached wonderment as little blood bubbles rose to the surface. I was in, what felt like, a trance. The next morning, my leg hurt and I was filled with shame at what I had done and vowed to never tell anybody or to ever do it again. I had a date for surgery about a week later and I focused all my energy on that and how I would be feeling back to myself before long. That was late April 2009.

An increase in medication followed surgery to ‘manage the pain’. I do not recall now what medications they were, only that I was hazy and desperately hopeful that it had worked and I could get back to my life and to being me. Fast forward to mid-June and I find myself back in the GPs office. The back pain remained, although slightly less debilitating, but it had been joined by crippling emotional and mental pain and an overall sense of being hopeless and helpless. I had merely gone for a run four months previous and hurt my back. I was at a loss as to what was happening and I only knew that I wanted the pain to stop. I left the doctor’s office with a diagnosis of depression, a probable diagnosis of anxiety, a prescription and a high dose of shame and stigma. On that day I was prescribed Lexapro, an SSRI antidepressant for ‘my depressed mood’, Xanax for ‘my anxiety’ and stilnoct, a sleeping tablet for ‘my insomnia’. I remember the slow walk for hours before I plucked up the courage to go into a pharmacy to hand in the prescription. Little did I know that this was the start of the 12 year cycle of pills, prescriptions and pharmacies.

The tablets kept increasing

The self-harming incidents worsened and became more serious. What began as little scratches became open wounds requiring stitches. More back surgery followed that September and more medications to manage pain, including anti-convulsants and opioids, were introduced. Levels of suicidal ideation increased and I quickly spiralled into complete and utter despair. Come late November 2009 I found myself in a locked ward on 24 hour observations in a psychiatric hospital in Dublin. Little did I know I was about to take up residence there and would go on to have approximately thirty admissions to that hospital over a nine year period.

‘You have Post Traumatic Stress Disorder Type two (now more commonly known as Complex or cPTSD) from unresolved childhood trauma’. ‘Your prognosis is full recovery’. Talk and tablets was the answer; or so I was told. And so began years of therapy and deep diving and every modality imaginable. The tablets kept increasing. There were ‘mood stabilisers’ to stop the racing thoughts reaching 800mg of Seroquel daily at its peak. Dissociation worsened and self harm instances became more frequent and more intense. They were joined now by overdoses and numerous serious attempts to end my life. Anti-psychotics, anti-histamines, anti-convulsants, anti-depressants, anti-anxiety; the list went on and on and reached 13 items on a prescription at one stage. There were all manner of side effects and then a diagnosis of Borderline Personality Disorder came as I was engaged in self harm. I gained weight on the medication and stopped eating then in an attempt to control something and I was diagnosed with EDNOS (eating disorder not otherwise specified). On and on it went.

A glimmer appeared when I managed to make it back to work in 2016 and I recalled that I had had a life free of medication and despair prior to ‘the run’ of 2009. Thoughts of other ways continued to niggle away at me and in early 2017 I began the process of trying to reduce some of the medication. There were many to work on and I agreed with my GP to begin the process one substance at a time. For some I noticed little or no effect but one that almost blew my mind was dalmane. I had been on in for sleep, for years and years. Two dalmane 30mg nightly for about seven years. I had not known that it was a benzodiazepine and was completely unprepared for the withdrawals that accompanied it. I remember the extreme confusion and what the psychiatrist later told me was called ‘jamais vu’ which translates as never seen. It is déjà vu’s opposite and possibly even more unsettling. Everything familiar was brand new, to the point that I did not even know what my hands were or what to do with them on occasion. I persevered and got off it. The more I reduced the medications the better my mood seemed to become. I began to see things in almost Technicolor, I felt feelings for the first time in years, I felt connected to people again and perhaps most importantly, I had a sense of hope and a want to be alive. I sped up the process of withdrawal without telling anyone and decided to abruptly stop Seroquel. It was the one I disliked most and could not wait to be free of it. My mood elevated rapidly and went up and up and up. I had never been happier but bit by bit I was losing control. I was working in an environment that at the time was as out of control as I was, and that further added to the stress on my mind and body. I stopped sleeping. Day and night became inverted. My energy became intense and unpredictable. I was being hit with old trauma memories in constant quick succession and I felt I was running for my life. I trusted nothing and nobody. Complete mayhem ensued. (The tales from the months that followed could fill a series of books- they can wait for another day). In September 2017 I was diagnosed with Bipolar Type 1 and told that I was in a dysphoric manic state with psychotic elements. My prognosis was no longer full recovery. I was to be on lithium for life. The different anti-psychotic medications I was put on at that time are something I wish I could forget. I was like the walking dead and they led me into the deepest and darkest depression that I had ever experienced.

Finding a way out

I remained in that hospital until March 2018 and when I left I vowed I would never go back. To ensure this happened I stopped paying for health insurance and with that move I was no longer welcome there. I was linked with Community Mental Health and began the process of regular blood tests for lithium levels. The amount I took went up and down depending on the blood results and other medications, including the infamous Seroquel, remained. I continued to exist. There were low times and not so low times but the cycle of constant hospital admissions was broken. Fear kept me medicated until enough time passed that I was able to look that fear in the eye again and reengaged with therapy and practices that I knew helped. I had a choice to make. I could either, remain in a medicated existence forever more and settle for a life half experienced, or, I could dig deep and give it another go. I asked the psychiatrist to work alongside me and she agreed. With that began the slow and measured withdrawal. It was easier this time and calmer. Perhaps previous experience allowed me to know what I could possibly expect. I had a lot more personal support from many places this time around too. It was not without its challenges but I did it.

The past two years have challenged me in ways I did not expect. So much has changed and I imagine much more is yet to change. It has been a process of discovery and re-discovery, remembering and figuring out who I am, or who I was before substances and ‘stuckness’ dominated my life. I have had to question the stories I had been telling myself, I have had to be self-responsible and I’ve had to dig into the very core of myself to find what was there outside of the overplayed narrative of diagnoses and disability; invalidity and inevitability. I’ve had to tentatively feel around the edges of my memory and recall and begin to trust myself again and to drag myself from being a helpless victim of trauma and the system to standing tall and to begin again the process of reclaiming my autonomy over my own life and the path I take through it. I feel like I’ve emerged from thick sludgy mud. Bits remain stuck to me no doubt but with each step forward and with each release they wash away bringing me closer each day to my original true essence.

I look forward to further discoveries.