• Tom Robinson

Psychiatric medications part 1: informed consent and the importance of the patient-led approach

Updated: Jul 13

The role of medications in psychiatry is a contentious issue and one which I have often felt hesitant about discussing.


The reason for my caution is that I don’t want to scare the people who are currently taking these medications and encourage them to go ‘cold turkey’ because that can cause all sorts of unwanted (and terrifying) problems, as I know only too well myself!


However, I do think it is important that patients are informed of the risks involved in taking and/or discontinuing these psychotropic drugs, and that is why I am now sharing my own (often quite worrying) negative experiences of them.


I also think it is important that the psychiatrists take note of the problems their patients are experiencing so that they can develop a greater understanding of the side effects and withdrawal problems that these drugs are creating in us!


Maybe then they would understand mine and other’s reluctance and resistance to taking them!











Every brain is different


The biggest stumbling block in psychiatry is that everyone’s brain chemistry is different which means that no two people react in the same way to any given drug.


Within the psychiatric profession, opinions over the efficacy and safety of many of these medications is also divided, this means that treatment protocols between psychiatrists are often different - It’s an absolute minefield for the poor patient!


This problem puts the emphasis on the doctor/patient relationship and means that psychiatric treatment should almost always be patient-led.


Unfortunately, this hasn’t always been the case in my twenty-year psychiatric nightmare, because I have had to repeatedly trust my own instincts above the advice of numerous doctors throughout my horrific ordeal.


This has resulted in me either being labelled ‘non-compliant’ and a ‘difficult patient’ or (when in hospital) being bulldozed to the floor and injected with the rejected meds instead.


“The patient is the expert of themselves.”

Only the patient can know if a medication is benefitting them or not, and only they know what kind of side effects or problems they are experiencing while on it.


This is something that I implore all psychiatrists to be mindful of when prescribing these treatments and medications because we are the experts of ourselves, and if we say we can’t tolerate a side effect of a drug then there’s no point in increasing the dose! 🙈









‘We learn from you guys’


My current psychiatrist understands the importance of the patient-led approach, and the route to full remission from my illness has been a collaborative effort between both of us.


I have been honest about my experiences when taking each medication, and he has been accepting when I’ve decided that a drug or dose just isn’t for me.


I feel heard when I voice any worries that I may have regarding side effects or new symptoms, and he takes these concerns very seriously.


This is important because it nurtures the bond of trust that (should) exist between a doctor and his or her patient.


My amazing doctor also appreciates that it is the patient’s experiences that drive the way we develop our understanding of how to treat mental illnesses in the future.


It is therefore important to appreciate this patient-led approach in all areas of medicine, but especially so in the field of psychiatry.









Warning to others


Before I go any further, I want to warn any patients who are reading this, not to go ‘cold turkey’ and stop their medications immediately.


Some of the psychiatrists now agree that the risk of relapse is higher when you discontinue these medications than if you’d never started taking them in the first place, so please be incredibly cautious before deciding to stop.


They are also beginning to appreciate that these drugs can cause horrifying withdrawal problems when trying to discontinue them so please exercise extreme caution before making a decision to stop.


Discontinuation problems have been a problem for me since the very beginning of my illness because the drugs caused a myriad of unbearable side effects which meant that I was constantly having to withdraw from one before being able to try the next.


This only added to my problems, increasing the turbulence of the rollercoaster, exacerbating my symptoms further, and causing me no end of disappointment and unnecessary suffering!









Treatment with antidepressants


I put my first foot on the psychiatric roundabout nearly twenty years ago now, which means that both my illness and the development of new treatment protocols have evolved in tandem.


I have therefore had to withstand the full spectrum of treatments for this disorder before I eventually found the one that alleviated my symptoms without causing any horrifying side effects or withdrawal problems.


As is the case for many people with bipolar disorder, my illness first presented itself with an episode of depression, and I was therefore treated with antidepressants.


These medications either did nothing to alleviate my depression or induced a terrifying worsening of symptoms which included: insomnia, itchy rashes, sweats, brain zaps, panic, fear, anxiety, hallucinations, sleep paralysis and night terrors, and most worrying of all - suicidal thoughts.


This meant that I was now battling so much more than just the illness itself because I now had these horrifying side effects from the drugs to contend with too.


I now recognise that my bipolar illness was, in part, created by these medications because they catapulted me into a ‘mixed state’ where I was manic and depressed at the same time, when I was experiencing racing thoughts and insomnia, combined with raging thoughts of death, dying and suicide. How I survived that is anyone’s guess!


There is now even a recognised category in bipolar disorder for people who go manic or into a mixed state because of these drugs!


We are generating, feeding and creating epidemics of mental illness which is quite frankly, - a terrifying situation!










Treatment with psychedelics and antipsychotics


When it was finally agreed, much later in my illness, that antidepressants were not the answer for me, I was then given intravenous ketamine which backfired so spectacularly that it really is a miracle that I’m still here.


The psychedelic horse tranquillizer catapulted me from suicidal depths of despair, to manic, euphoric high in the space of just a few days, the result of which was a traumatic three-month hospitalisation and a forcible administration of antipsychotics.


Once again, these medications did nothing to prevent the onslaught of the (inevitable) crash into darkness when I was finally discharged from hospital, and I was left in another horrifying mixed state - unable to withdraw from ‘zombifying’ drugs that worsened my condition because of paralysing insomnia without them.


This is something that every person I’ve spoken to has a problem with, particularly with the antipsychotic ‘quetiapine’ which is far more potent than the doctors appreciate and is known on the street as ‘baby heroin’!


Most of these people have either gone through hell for weeks on end and risked relapse by going ‘cold turkey’ to get off these drugs, or like me, they are still trying to withdraw from them years after that first fateful injection or prescription.


Bizarrely, there is hardly any current research or literature available on how to withdraw safely from psychiatric medications and this is something that I will be discussing in my posts this week.


I will also be looking at some of the worrying long term effects of taking psychotropic medications that are now beginning to emerge in the medical literature - so be sure to check back in!


Thanks for reading,


Speak to you soon,

TR

www.dyingtostayalive.com




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