So Long, Psych Meds: Escaping the Medication Maze

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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 of 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. 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 our 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 dependent 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 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 a 12-year cycle of pills, prescriptions and pharmacies.

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 anticonvulsants and opioids, were introduced. The 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 observation 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 were the answer; or so I was told. And so began years of therapy and deep diving into 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. Antipsychotics, antihistamines, anti-onvulsants, antidepressants, anti-anxiety drugs; 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. With some I noticed little or no effect but one that almost blew my mind was Dalmane. I had been on it 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 I 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 antipsychotic 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. 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 forevermore 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.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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39 COMMENTS

  2. I hope it is not offensive or saddening:
    And so the cormorant rose from a lighter sea, and from above she could see the clouds oblivious below the water. She could fly and breathe below but could only see the storm from the clouds above, not before, even if she could feel the crushing salts. Solutions that cloud the soul imbibed in the path of her flight. Perspective illusions from a floating line that tenously separates special sensitivy from standing in her own merit. Flying under the push of her strong wings. May the winds be favorable to her path, so we may someday feel again at a distance the thin air of her strong currents…
    ///////
    ( o o )
    #——#
    | | | | |
    ———–
    -| | | | | –

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  3. The Great Escape (from psychiatry) – mine was in 2009. But I will say weaning off the psych drugs isn’t easy. Kudos, Nicola!

    I’ll just give you one word of warning, as one who dealt with two different drug withdrawal induced super sensitivity manias – which I’m pretty certain would be the technical name for your mania.

    My second one happened about two years after I had been weaned off the drugs for a second time. So the doctors are wrong when they tell us that withdrawal is a short run issue only. But if you were to have another manic episode at this point – likely taking a small dose of the prior med, briefly – will get you through. At least that’s largely what happened to me, and I’ve been psych drug free, and largely fine, since 2009.

    Thank you for sharing your story, Nicola.

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  4. This story and this site is amazing. Excuses are the most powerful slowdown of the human consciousness, enabling going through so much confusion of therapy and meds. The fasting or “feeling hungry” has made my mind the most clear, I just wish it wasn’t so exploited by ads. I thank you all so much for sharing and hope to tell my story when psych free, maybe sooner.

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  5. Nicola,
    I know the story all too well! Thankfully you’re now on your feet and getting somewhere. Its good to see you on Mad In America.

    I had made Recovery in 1984 as a result of carefully stopping strong Psychiatric drugs, after a few disastrous years on them.

    NOTE BENE – When I left Western Ireland in 1986 I wrote to doctors at the ‘Unit’ asking them to send ADR Warning to the UK concerning ‘medication’ that had caused a number of suicide attempts. The doctors assured me they would do this – but they sent over a negative account of me instead, deliberately withholding Adverse Drug Reaction Warning.

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    • Not giving medical advice.
      Medications used to decrease the frequency, i.e. how many in a year, of seizures in people who have a chronic, as in repeated, seizure disease. Even if that disease is not at all clear what it is, which is called idiopatic epilepsy.
      Anticonvulsants are also used, mainly in the form of intravenous or intramuscular injections when a first seizure does not stop upon hospital/medical care “arrival” of the sufferer. In this cases mainly benzos.
      When that doesn’t stop the seizure, some other anticonvulsants are used to stop the seizures, since more than 5min of continuous seizures can cause decease.
      How that kind of effect, “therapeutic effect” is at all related with “mental illness” is beyond me, and some other experts.
      What some have especulated is that it is just a sedative with intermediate potency between benzos and neuroleptics. The neuroleptics actually make people who take them more prone to seizures, not less. And the benzos make more prone to seizures when you have to stop taking them because of dependency, addiction, tolerance, or something else. “As time goes by”…
      And, as guesswork from the psy’s there was the theory of neuronal “instability” in BPD and Bipolar, all kind of “explosive” or “impuslvie” disorders which by ANALOGY with seizures, not epilepsy, came to be used, as I recall, in such mental “conditions”.
      So, I guess, I answered by own question: culture and tradition…
      And since benzos are susceptible to what I stated above and anticonvulsants were and are used chronically, i.e. years, with apparently not increasing the frequency of seizures in people with epilepsy, then I can guess that that’s what they are gonna use when sedation is a “desired effect”, in the long run: i.e. years. Since benzos wear off, neuroleptics may make things worse, etc. But that is a hunch, a guess. An analogy gone wild.
      But they do have side effects, some severe, like pancreatitis, heart disease, and if I don’t miss remember even some brain changes, that some at MIA have described as “damage”. I am not questioning that, just saying I haven’t read about any of that in a while, so I wouldn’t know.
      And in top of that, the physicians that used them for years were actually subspecialists: neurologists that then did at least 1 yr of training in epilepsy, among other things because those medications are actually risky, lots of side effects, lots of risk to control chronic seizures particularly in minors. And! they have to be used years and years. Which to my unenlightened opinion is far from the “training” that psychiatrists get when learning how to use anticonvulsants as psy meds. But that is my especulation, not a factual statement….
      And neurologists do know about the brain and the peripheral nervous system. As they do know about the heart, the endocrine, etc. They are, to my lame opinion, the typical “cuasiobsessive know it all” that goes into med school. Just doing a thorough “neuro” exam is vexing to ANY advanced med student. Let alone making sense of one.
      Way, way different to a psychiatrist, I have never seing a psychiatrist do a full neuroexam. Which if I am not missremembering, are among the lowest scoring medical graduates. But I might be missremembering, even confabulating like the current bots…

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    • Sorry, I forgot to rant something that I think is relevant:
      The other medications that as far as my forgetting memory remembers are as critical to use, and to me, certainly more riskier are the antiarrhythmics. They have similar ways of working, just they work, mainly, in the heart instead of the brain and peripheral nervous system, the muscles, etc. And they are far riskier because they can cause stopping of the heart.
      I am not saying they shouldn’t be used, either anticonvulsants or antiarrhythmics, or that ANYONE should stop using them, just saying they are difficult to use, and training and KNOWLEDGE before and during using them is a requirement to prescribing them, regardless of what any specialist think their license entitles them to…
      And to my lame opinion, cardiologists actually do have a reputation, among physicians, if not of anything else, of being very responsible physicians, even if at times, a little “rough”, like at least one Elvis song. And given the stakes of their treatments and medications on such central equipment of the human machine, it would be only fitting.

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    • Geez, I am sounding like Sterling Archer’s oncologist:
      And cardiologists that do use antiarrhytmics, for the most part if I am not missremembering anymore, are actually also subspecialists, that is cardologists that do at least 1 yr learning how to diagnose and treat arrhytmias. And there are several branches of that: those that do surgical room stuff, and those that do clinical stuff. But, don’t quote me on the last one, I am not entirely clear how many branches of subspecialism there are in arrhytmology, heart arrhytmology.
      Which again, is way unlike psychiatry.

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  9. You are not bipolar – you experienced dopamine supersensitivity syndrome from your abrupt withdrawal from seroquel. Similar to a commenter above, I had to go through two episodes in two years after Withdrawing from an antipsychotic before I was finally “in the clear”. Imaging how many people get caught in this cycle and choose resignation- thank you for your unbelievably strong and inspiring story.

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  10. Thank you for sharing your story. Every time an old… meaning 86yo… friend of mine talks about considering medication for his depression, I cringe inside… and your story is a fitting testimony for why I have never accepted my GP’s offer of a “mild anti-depressant” when I was struggling with suicidal thoughts due to unresolved childhood trauma, and having spent the better part of 20 years on and off in various therapeutic sessions… individual, couple, family and group sessions… and also receiving a “diagnosis” for depression, anxiety, adjustment disorder and finally bipolar type 2…

    My own take on pretty much ALL these “disorders” is that they are perfectly natural responses to the utterly INSANE societal standards of “normalcy” that we are programmed to live under in “modern” society.

    As for my “adjustment disorder” diagnosis…. I almost laughed out loud at the psychiatrist who gave me that diagnosis after a single 45 minute interview.

    Krishnamurti said it best:

    “It is no measure of health to be well adjusted to a profoundly sick society. ”

    And have you seen this quote from Pete Walker’s book CPTSD… From Surviving To Thriving….?

    “I once heard renowned traumatologist, John Briere, quip that if Cptsd were ever given its due, the DSM [The Diagnostic and Statistical Manual of Mental Disorders] used by all mental health professionals would shrink from its dictionary like size to the size of a thin pamphlet. In other words, the role of traumatized childhoods in most adult psychological disorders is enormous.”

    I applaud your perseverance and strength for overcoming the “psych system”. All the best

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  11. Someone asked about anti-convulsants, and I think, yeah, funny thing the other drug, beside neuroleptics, so-called anti-psychotics, prescribed for people labelled bipolar, are the drugs used to quell epileptic seizures as if there was any relation between the two diseases, disorders, or whatchamacallems. There is a relation, and that relation is money, the money people make selling, if not exorbitant cures, bogus and unending treatments.

    A lot of people’s problems in the mh sytem are due primarily to the psych drugs they’ve been prescribed. I’m glad you’re managing to kick them.

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  12. Psych-drugs are not the best solution to problems in living. There are better ways of dealing with the twists, turns, bumps and bends the world sends your way. I commend you for having, if you have done so, quit the habit.

    I hope other people can also manage to do the same, and through such efforts, wend their way free of the “mental ill health system” maze.

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  13. Ms. Clare,
    I’m offering this as additional validation to your story..

    “A Unicorn: Changing a Medical Record” Parts 1-4, RxISK.org., 7/30/2018

    “Full Moral Status for Psychiatric Clients: How I Fought Back” Parts 1-2, MADINAMERICA.com, 2/1/2019

    These (very) broadly document my experience in psych-world (9/2004-1/2016+), focusing on a final iatrogenic catastrophe (2013 anaphylaxis) that I parlayed into doctor-guided withdrawal (2.5 years) and vacation of THEIR “lifetime” bipolar 1 diagnoses IN WRITING…in very broad strokes.

    It DOES NOT include the texted sexual coercion from my ‘exit’ doctor (I have preserved) who now is the VP/CMO of an enormous Arizona behavioral management state contractor…or 3 subsequent years of 19 seizures that began 4 months after my official exit (1/2016), mercifully ending in late 2019…with no help/support from conventional medicine.

    Re-entry into the world has been very difficult (and isolating) at times…. and rewarding in a new, powerful way.

    I’m outwardly doing well, very well. I struggle a little every day…but have re-claimed my life, rebuilding, researching, understanding ‘how that happened’…WHO is responsible…and what damages I am continuing to address-primarily a pre-frontal subcortical focal lesion and TRUST with doctors….necessary relationships as I age.

    I am beginning to manifest new physical issues: some possibly age-related…but with ties to the documented brain, heart and liver damages incurred on the psych drugs.

    **By necessity, I have recently shared my carefully documented drug history: listed w/the # of times they were prescribed AND re-introduced over the years, regardless of the ADR’s (also listed). It’s a single-spaced, concisely formatted, full page, titled ALLERGIES.
    THAT TITLE will get their attention…and caution.
    Ironically, they fear flipping anyone into…wait for it…anaphylaxis….the thing that ‘saved’ me…and apparently the cure for Bipolar 1 !!!

    The 2 paragraph, non-editorial ‘explanation’ of my diagnosis & vacation is included. I insisted. Without it, they assume you’re ‘mentally-ill’ and many decisions & communications will have that influence. As WE know, that’s NEVER to our benefit.

    For the first time, I have insisted the CHANGED DSM 5 coding is included in my medical record. NOT A SINGLE DOCTOR since 2016, has thought it significant to include. YIKES.

    If the PSYCH drugs and damages are on record, the REVERSAL OF THE DIAGNOSIS BETTER BE THERE.
    I hope to prevent any careless prescribing of ANY neuro/psych/sedation, etc…without my full awareness & approval/hard NO.
    I am 72…and fully aware that sedation is in-play for this age group.

    Characterizing (accurately) the ADR’s will hopefully send a big, flashing LIABILITY warning to any cavalier prescribing…especially if I’m distracted by other immediate medical challenges.

    Previous doctors (primaries) have shown little understanding of what I shared regarding that period in my life. I discovered too late (seizures), they still viewed me as ‘still’ mentally ill, suggesting I re-enter the psych system to ADDRESS the seizures.
    PNES is definitely in-play….BUT…. So is my history of MICROGRAPHY…only caused by a specific brain lesion-produced by ‘exposure’ to anti-psychotics….OR…Parkinsons.

    I don’t have Parkinsons.

    This whole situation makes them noticeably uncomfortable.
    In 18 months, I have changed primaries 3 times….having the best communication I can find is crucial to my future SAFETY.

    As an aging female, I am at particular risk of medical bias…with a ‘psychiatric diagnoses history’ (when they see the ALLERGY list) it gets confused & complicated very quickly in 8 minute appointments.

    A doctor’s hurried ‘impression’ can (and clearly does) ruin lives. I know it far better than they do…& NEVER apologize for the extra time to explain ‘what it’s about’.
    And I do, carefully, insistently…& (most importantly) CONSISTENTLY.

    My presentation has been honed, edited, and practiced to elicit the response and lasting effect I require. SAFETY & ACKNOWLEDGEMENT OF MY CREDIBILITY.

    It’s a big job, patrolling my records and their notes (on Patient Portals) with every new doctor, tweaking, red-lining, insisting on corrections to MY MEDICAL RECORD.
    MINE.
    I know it has the power to kill me or save me.

    All aging people have to be a little extra-vigilant.

    The life I have re-claimed and re-built is fuller, richer, & more intentional than I had before I was diagnosed. My power has been tested and was effective saving & nursing me back to life.
    I am grateful for my resiliance and will.

    And I know who I am.

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  15. I went to a psychiatrist when I was 37. She worked in a laboratory at a teaching hospital and did not have a clinical practice. I saw her because I worked at the hospital and she was available. When I told her I was under duress from an abusive husband she said I was bipolar and prescribed Trilafon which I had filled that day. The next morning one side of my face twisted into a gargoyle-like paralysis. I was referred to a regular psychiatrist who had the bedside manner of a baboon and off we went on the maniacal medication Wheel of Torture. I ended up being hospitalized 20 times for schizophrenia, bipolar disorder, major depression, anxiety, borderline per sonality disorder, and whatever other label they could come up with. After 19 ECT sessions I was so damaged I could never work again. At 39 I ended up back living with my parents for over a decade till I could get on disability income and barely exist. After 3 suicide attempts and 27 psyche med trials (15+ yrs on horrible antipsychotics that turned me into a zombie) I managed to wrest myself away from all but 2 of the meds. And now at 65 I am a broken old woman. Why didn’t the original lab psychiatrist tell me to get a divorce and get away from the abuse instead of giving me stupefying pills. I think the medications wrecked me as much as the bad marriage, probably more. Then ECT was icing on the sh*t cake. I rejoice now if I have depression and anxiety because I am actually feeling honest emotions. I never had “flat affect” UNTIL I took antipsychotics.

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  16. Ms. Clare had to defund herself (i.e. cancel her health insurance) in order to defund the quacks who wanted to lock her up. In all, she spent at least 8 years in psychiatry before she found a clinician who was willing to help her quit the psychiatric drugs. Outcomes like hers are the norm for people who begin psychiatric “treatment”. Despite what you hear from mainstream media, you are FAR more likely to receive abusive “care” from psychiatry than you are to receive quality care.

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  17. Hi Nicola,
    I happened upon your story here after you liked a comment I made in response to a MIA tribute to Sinead O’Connor.
    I am really glad that link sign posted me to read your story here. It’s a story that is all too relatable to everyone on this thread, and as we all.know, thousands of others who have fallen into the Hell that is Psychiatry/over prescribing of psychotropic medication/the mental “health” system…any or all of those, we take our pick.
    Your story was painful to read – a reminder of just how easy it is to initially be pulled into this system, and how scarily rapid the symptoms, then the medications and diagnoses, escalate. The irony here is that the madness is in how everything spirals out of control because of the system itself and those who drive that system, and yet it is us who are labelled as mentally ill – mad. That you were in that system for 12 years and endured 30 stays on “the ward” is heart breaking, as are the equally and lengthier periods that other commenters on here have talked about. I am happy for you that you stopped paying your Health Insurance and that you were finally able to get off the poison with the help of a decent psychiatrist. That you survived and have begun to live fully again and want to live is wonderful – despite their efforts, you hung on to your precious soul and it sounds like that soul has guided you to do great things.
    I am especially interested in your engagement with Shamanism and would love to read and hear more. I hope you continue to move forward and thrive. From a fellow resident of Ireland, Claire (ClaraBow).

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