Medical Gaslighting of Patients with Akathisia – a personal story

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I had been followed by a psychiatrist for many years for Tourette’s Syndrome.  My tics were severe and I was prescribed powerful antipsychotics to control them.  My tics decreased markedly ten years ago but the decades on Risperdal and other neuroleptics left me with a profound sleeping disorder.  Two years ago,  I was diagnosed by a psychiatrist, who followed my sleeping problem, with paranoid psychosis.  Whatever my symptoms, the treatment I would be given would be far worse than anything I could have imagined, however ‘paranoid’ I may or may not have been.  In this blog, I recount my experiences with akathisia, a severe and distressing known side effect of the drugs I was forced to take.

Akathisia is a movement disorder that resembles Parkinsonian tremors.  It can be so severe and distressing that the sufferer commits suicide to end the torments.  It would become a familiar feeling.

After my diagnosis as paranoid, I was hospitalized in a large psychiatric institution for a schizo-affective disorder, a diagnosis which I contested.  My attempts to report the side effects of Abilify  —  a neuroleptic that I was forcibly injected with  —  to the nurses’ desk were continually rebuffed.  I was refused Propanolol and Cogentin and given nothing to alleviate the akathsia induced by the injections.

I was repeatedly told that the akathisia-like symptoms that I was having were not caused by the Abilify but by an underlying pathology.  What I was experiencing, nurses told me,  was not a substance-induced disorder but entirely psychological.  This pretence would be maintained by doctors and rubber-stamped by the courts.

In a court, someone with a pre-existing neurological disorder or comorbid condition is damaged goods.  They are not owed the same protections as others and are not provided them. They are told that their warranty has run out and that the expiry date has passed.   However unseemly and indeed dangerous it is to make such claims about another human being, psychiatrists make this very case almost every day.

This is the lesson that I would learn.

My lawyer had asked the court for a hearing to follow up on the effects of the forcible injections I had been ordered to undergo.

The hearing began with the lawyer for the hospital asking a pharmacologist about the drugs I was injected with and if she had had a chance to meet with me when the treatment was introduced.

The pharmacist said that she had not seen me but that a colleague of hers had followed up on me shortly after my induction treatment with Abilify.  The court was told that I presented few side effects but did “complain of akathisia.”  I had, in fact, asked to meet the pharmacist to report this very side effect.

While the pharmacist testified on the screen before me, I paced about restlessly in the viewing room, unable to sit down and wracked by the akathisia I had tried without success to report since my first injection with Abilify two months earlier.  The hearing would continue like this for another two hours.

I was visibly fidgety.  I rocked in my chair.  I had tremors.  As I forced myself to follow the proceedings, the outward signs of my akathisia would wax and wane. But soon the restlessness would return and with it the irresistible compulsion to pace around the small viewing room.

I had already had first-hand experience of akathisia, having been forcibly injected repeatedly with Haldol by sadistic nurses during my first weeks as an inpatient.  The nurses’ records report that the Haldol induced extrapyramidal syndrome in me.  Symptoms of extrapyramidal effects include an inability to sit still, involuntary muscle contractions and tremors.

To relieve the symptoms of  EPS, I was given an antihistamine.  It was only after three days that this began to take effect.  In the weeks after my induction treatment with Abilify, the akathisia returned.  It was less acute than with the Haldol but still distressing.  I would go to the nurses’ desk, crouched over with involuntary muscle contractions in my legs, waves of anxiety coursing up and down my body.  The nurses’ refusal to note my side effects only impressed on me more the need to go to court if only to leave some record of what doctors had induced in me.

The questioning of the hospital’s witness continued.

“From what I could see in the file,” the pharmacist told the court, “Mr. Nolin had little side effects that were presented.”  There was moreover a “positive response,” according to her, that was documented early on after the first dose of Abilify and that seemed to be maintained as the weeks went on.  I could only shake my head in disbelief at what I was hearing.

The lawyer for the hospital asked the pharmacist to tell the court what akathisia was.

“Akathisia,” the pharmacist explained, “is part of the side effect we call extrapyramidal syndrome. These are movement disorders.  Akathisia is the internal feeling that it is impossible to stay still and usually the patients are walking nonstop, they are unable to relax, unable to sleep.  It’s very usually distressing and very evident when we see patients with akathisia. We see it right away but there are ways we can help with that.  But with what I could see and in the notes from my colleague she could not see akathisia either.   The patient stayed with us 30 minutes at a time but without any external manifestation of akathisia but he does mention it.”   As she spoke, I paced the small room.  When I sat, my legs shook restlessly.

Two months earlier, doctors had been given a court order for forcible injection. Foremost among the drugs they had got the court order to use in my treatment was Risperdal and Abilify.  I was already living with the prolonged effects of Risperdal.  Abilify was the “go to” drug now and the pretence that it had no side effects, I would learn, would be maintained no matter how farcical it became.

“What,” the hospital’s lawyer asked, “were the reduced symptoms that were observed by the treating team?”

“What was observed,” the pharmacist told the court, was that “Mr. Nolin had expressed that he was feeling better with the Abilify.  The conversations that seemed to be bothersome to him were reduced. He mentioned also being a little more open and more sociable and I think that was also documented by the treating team… I believe it was also documented that the exchanges between the treating team and himself were a little bit easier and less tense.”

Evidently, the pharmacist had not been in the ward when the drugs were dispensed in the evening and I learned my fate for that night.  I was livid.  My sleeping disorder is profound.  The drugs doctors prescribed me failed to help me sleep.  The nights were endless.  I would lie awake tossing and turning with long bouts of akathisia. Days passed in a drug-induced stupor.   Never did I mention feeling better because of the Abilify.  The tension between me and the staff became untenable.  After a few days of high drama, the staff finally started drugging me to sleep with Ativan.

It was during this second hearing that I would come to appreciate the larger, legal framework my reports were received in.

After the injections began, the pharmacist had dropped the pretence that I should voluntarily take Risperdal or Abilify.  After all, it was a done deed.  She no longer had to offer her ‘personal opinion’ on my pharmacotherapy. It was this that was responsible for the reduced tension between her and me and not any change induced by forced injections.

The hearing became a discussion of diagnostic labels.  What was or wasn’t akathisia.  All I knew was that what I felt was little different than the akathisia I woke up with after I was injected with Haldol.  The refusal to acknowledge my reports of side effects was not new.  I had had bad experiences in the past with doctors who refused to listen to patients’ reports of side effects.  But now I had the ear of a court. I would yell into the bucket.

The cross-examination began.  The pharmacologist was asked if there were degrees of akathisia.

“As to my experience,” she explained, “it’s a type of side effect that can happen with antipsychotics. As to my experience of treating patients with akathisia, it’s usually constant.  It’s not something someone can hide.  I’ve never seen mild akathisia. It`s not something someone can tolerate for long periods.”

The pharmacologist was then asked if the tension I felt in my limbs and torso and the fact that I was unable to sit down and had to pace about the small viewing room were symptomatic of akathisia.

“If I can give you a professional opinion of a pharmacist,” Mr. Nolin’s “response,” the chemist told the court, “is appropriate for a high stress situation and a high stress environment. Somebody with anxiety can also have so from what I’m seeing I don’t see akathisia.”

The side effects of the Abilify continued during the hearing.  Yes, I could sit still.  Even for minutes at a time.  But then the tremors returned.  This would all be attributed to my underlying functional neurological disorder.  The question of whether the Abilify caused my movement disorder was greeted with surprise.

Akathisia was indeed a side effect of some neuroleptics but Abilify, it was stressed, had no such side effects.  The hospital’s witness, however, had been in court with me before I was injected with Abilify. I had sat calmly throughout all previous proceedings, including my hearing on forcible injection where she had also testified.

The lawyer for the hospital then began her questioning of Dr. P, my treating physician.  Could he, she asked, tell the court his observations?

Dr. P spoke for the team and recounted the progress he claimed that they had made:  (All translations from the original French are by the author) “We’ve come a long way from a patient that was paranoid and distrustful and with which a therapeutic alliance was very difficult if not impossible.  And we have observed gradually with the treatment, as his witness noted, that Mr. Nolin is more docile, conciliatory and more convivial in the ward, in parenthesis, he is more sociable with the other patients.  This allows him to play with the other patients.  And in regards to our relationship, I see him a few times a week.  Our relationship has changed. He allows himself to talk more about himself.  He has divulged more information about himself.  He opens up easier.”

I profoundly distrusted Dr. P.   Abilify would not change that. What my witness had, in fact, testified was that he had visited me during the days following my injection and that I was different insofar as I could not sit still and paced around the small evaluation room where visits took place.  Vocal tics from my Tourette’s Syndrome, tics that I had not had for several years, had also now returned.  My witness had never heard my tics before and told the court that they were intense and alarming.

Dr. P also lied egregiously about what took place during our evaluations.  I would learn this by contesting my confinement and reading the evaluations he submitted to the courts.  It was Dr. P’s demeanour and not mine that had changed after the injections had begun.  The yelling and histrionics that were his usual approach were replaced by a chummy familiarity.  Staff had also changed their treatment of me.  If I had become more amenable that was the reason and not any involuntary injections.

As I paced the small room, I tried to follow Dr. P’s testimony as it ran its otherwise predictable course.  I had a pre-existing condition, the court was told, and that was responsible for my pathetic state.   My behaviour was clinically disordered but this, the court was asked to believe, was totally unrelated to my having been injected with powerful neuroleptics only days earlier.

The hospital’s lawyer asked Dr. P to expound.

“The day after the injection [Mr. Nolin] had difficulty reading,” the court was told.  “He was confused and had difficulty concentrating but these symptoms have diminished.  These symptoms were, further, according to Dr. P,  both “manageable and tolerable.”

Dr. P then spoke about my vocal and motor tics, which I had not had for several years but that had returned full-blown after he “modified” my medication.  “The Tourette’s Syndrome,” he said, “dates back a long time.  Is there a cure? No but it can be controlled with neuroleptics. Mr. Nolin had these bizarro symptoms before the injection.   He had them for three or four days but they stopped on their own.”

My vocal tics punctuated the hearing. They could be heard in the hallway outside.  Security came.  The hearing was interrupted.  It was explained that I could not control nor suppress my vocal tics.  The proceedings continued.

“We see again today,” Dr. P told the court,  “the reappearance of bizarro tics.  They cannot be attributed to the Abilify but started with an underlying sickness and with, as we see elsewhere in psychiatry, the anxiety and fragility that come with sleeping poorly and financial difficulties, the reappearance of an underlying condition.”

Dr. P’s characterisation of my vocal tics left no doubts as to the strength of his antipathy for me. He continued.

“As we see, Mr. Nolin is able to concentrate and question.  He gets up and he walks around but this is absolutely not akathisia,” Dr. P repeated.  “Akathisia is a need to constantly pace and move around, an inability to remain calm.  With Abilify after two weeks we see a small improvement but it’s not the real change we are seeking.  But at six weeks we can begin to see real improvements not just with the difficulties in concentration but in the affect and emotions.”

Dr. P’s characterization of my mental state after my injection was a lie, the kind of lie pharmaceutical companies pay doctors to tell.  During the weeks that followed my forced injection, I had been unable to read.  A nurse compared my condition to a stroke patient who must relearn to walk.

In 1995, I was put on what was then a new drug, Risperdal.  Combined with an antidepressant, it was meant to help control my tics.  The neurologist who had prescribed the drug regimen thought it an innovative treatment and published an article to that effect.  He also refused to believe patients’ reports about the side effects of his treatment.  This was my first experience with akathisia. I also suffered severe depression and at least one patient on this new drug regimen committed suicide.  Another article was published.  I was among the 15% in the doctor’s sample who had suffered these effects.  Tragically, people had to die before he reported their side effects.

The judge asked me if I had noticed any improvement in how I felt. I shook my head.  “No,” I said.  She disagreed.  I had improved markedly in her estimate but then she had ordered my injection, the effects of which she was now querying the object of her judicial discretion.

At my hearing for forcible injection, Dr. P testified that 25% percent of patients on neuroleptics experience side effects, including akathisia.  Now I found myself, as I paced the viewing room, among the lucky three quarters who didn’t, according to him, experience any important side effects. Evidently, it had been agreed that no side effects  —  no matter how evident otherwise  —  would be attributed to the Abilify.  Abilify would be characterized as an innocuous and sanguine medication.

My hearing was recorded on video.  Given this, it is very easy to prove that I was suffering from akathisia.  One has only to view the video for a few minutes.  At my hearing on forcible injection and earlier hearings, one where I represented myself, I had shown no such symptoms.  Yet my pre-existing condition was no less present then than at the hearing after my forcible injection.  To claim otherwise is to be disingenuous in the extreme.

My side effects were so important that they delayed my discharge for several weeks. Early on, I was told that if I was “voluntarily” injected I would be discharged in the following days.  The reality was that the side effects were so important that two months passed between my first forced injection and my discharge.  If the outer, visible restlessness caused by my akathisia was not always present when the tremors returned they were debilitating.  The sad truth is that people with few outward signs are continually misdiagnosed.  This can have tragic consequences.

Those with preexisting comorbid conditions are told it is ergo propter hoc an offence against logic to claim that their symptoms are side effects and not the product of some underlying pathology.  By such casuistry, cause and effect are turned on their head by a judiciary that renders those with preexisting conditions second-class citizens.

Personal accounts are evidently anecdotal, which is why I went to court:  to leave a record that could be corroborated by the experiences of others.

The pretence that there is no connection between pharmacological treatment and its otherwise immediate consequences is untenable and only maintained by a court system that puts itself into disrepute.  Those who have pre-existing and comorbid conditions deserve the same basic human protections given to others.  The sick are among the most vulnerable members of society.  Those with preexisting conditions are particularly vulnerable.  They cannot continue to be treated as an underclass by an alienist medical system and judiciary and must be given the validation they deserve.

I was able to change psychiatrists.  By publishing this article I am tempting fate.  I am still under a court order but hope against hope to have the forcible injections discontinued when the order elapses.

 

 

‘Depression and dysphoria in adults and adolescent patients with Tourette’s disorder treated with Risperidone.’; H.E. Margolese, L. Annabelle, Y. Dion; Journal of Clinical Psychiatry; 2002, vol. 63.

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Phil Nolin was treated for Tourette's Syndrome with neuroleptics, anticonvulsants and antidepressants. He now lives with the long-term effects of these drugs. He is the author of The Skull Behind the Face: Canada/Cambodia relations 1980 to 1986 and the short novel, The Observation Room, which can be found on his blog seenoevil1.wordpress.com. He lives in Montreal and plays guitar in Opioid Crisis.