Gripped by and Discarded by GlaxoSmithKline
Paroxetine, aka Seroxat in the UK and Paxil in the US, SSRIs, adverse reactions, rage attacks – words to which I wish I had been introduced without so much hurt attached.
Late in 2001, aged 21, one of our sons, Shane – one of a family of five placed in long-term foster care with us when he was just 20 months old – decided it was time to fly the nest. He was engaged to a young girl who was following the same Health & Social Care course and they had decided to move in together. They were on their final year at college and Shane had already been for an interview to Lancaster University where he hoped to follow his dream of becoming a Social Worker – “to give back for the care I’ve been given”.
Moving house can be stressful. Learning to live together with a partner is stressful. Trying to complete coursework on time and to a good standard can be very stressful. Put together, Shane had created a trio of stressful situations which led to a period of anxiety. He, it later became apparent, was eating very little, sleep was becoming problematic and he worried more and more about getting the coursework completed and handed in on time.
Reducing Healthcare Costs
Early in 2002, he visited his GP to explain how things did not seem to be going too well for him. The result, of course, was a prescription for an SSRI. We were unaware of this until a few weeks later. We knew that he was feeling stressed but had no idea that, by the time we were told about the medication, he was, in fact, on his third SSRI as he’d immediately overdosed on two previous brands. This third one was expected to suit him better than either of the previous two.
This third SSRI was Seroxat. Within a few days his life, and ours, were changed beyond recognition.
He remained at his home with his partner, so we were not aware of exactly how troubled he was becoming. During the following three weeks, we were asked to go down to their house to support Shane on numerous occasions. He was becoming increasingly agitated and concerned about his own state, often asking “what is wrong with me?”
We, of course, at that point, had no idea what was causing the deterioration in his condition. One night we took him down to the local hospital where he was assessed by a psychiatrist who told him that help would always be there for him if he needed it. The outbursts became a regular pattern and he seemed to be very angry at times. During the first weekend of June, after Shane and his partner had been out with friends, we had a phone call from his partner – Shane had gone home early feeling unwell and was now missing; his car was also missing.
We were totally unprepared for the news which woke us at around 3am. Shane had gone down to the local psychiatric unit to plead for help which was refused. He drove his car straight through the glass entrance into the foyer, got out of his car and lit a cigarette. This comment was made by a number of witnesses – meaning that his behaviour was extremely unusual. He had used alcohol whilst out that night, the only fact which seemed to interest the police despite the witnesses’ comments. His solicitor, who spoke with him during that night, said later that he knew immediately this was not an “alcohol case”.
As a result of this event, the courts demanded he should return back to our care, to keep everybody safe, rather than go back to his own address. It was then that we began to see how the Shane we knew was being replaced by a very angry, unstable young man. He disappeared from home on numerous occasions during the first few weeks to be found hiding in hedges or grass verges. Each time, on reflection, he would ask “what is happening to me?” We couldn’t provide an answer. We realised that this was a problem way beyond our control and set about trying to find someone who could explain and support. Everyone that we turned to were most helpful – all except the local community mental health services! No one mentioned the medication he was on and the fact that the problem may lie with that.
One evening, when all this hunting for support was in progress, Shane had a massive rage attack where he was hell bent on harming himself. He paced and shook and screamed for help, then would quieten down for a few minutes until the next wave came over him. Doctors suggested increasing his medication to quieten him down but nothing worked. An ambulance was called and he was taken in for assessment. A couple of hours later he was back home with extra medication in him which helped him relax enough to get a little sleep.
This pattern of seeking help, of a slight upsurge in his mood if help seemed to be on the horizon but a deep depressed state when he would just hold his head in his hands and utter “They’re not going to help me are they” when things seemed hopeless, continued for many days. He was assessed at the Priory, Altringham, and there it was suggested that the Seroxat should be replaced by Effexor but that change wasn’t carried out.
Now that we were seeing the full picture of his behaviours we became convinced the medication was to blame, in some way, for the changes in him. That fact – that medication was creating the problem – became apparent early in July. I now quote from a diary that I kept throughout those months.
‘9/7/02 – From about 7pm, Shane’s mood seemed to get lower and lower and by 9pm he was going out of control. It was exactly like an epileptic fit (but no frothing at the mouth) which came in waves every twenty minutes or so and each lasting maybe ten or fifteen minutes. It was extremely frightening and he was incredibly physically strong during those bouts. He kept asking us to get help but it was difficult to get to use the telephone whilst trying to keep everyone safe. It was as if his mind was split – he kept asking us to keep safe whilst saying the next wave was coming then totally lost control of his actions. We phoned the GP who suggested increasing the medication – that was quite impossible given the circumstances.
Eventually, we dialled for an ambulance and they were marvellous. By this time, Shane was upstairs and had a few outbursts there – trying to throw himself out of the bedroom window etc. The Police were called as it was feared that ‘powers of restraint’ would be needed. As it turned out, the local unit was willing to assess him so we were taken by ambulance, once again, to the unit.
The two young doctors who assessed Shane were marvellous with him. They were very thorough. For the first time, Shane had mentioned hearing voices that seemed to be controlling him. It became obvious that these had first appeared in March which was when he was first put on Seroxat. They asked, in detail, about that evening and then about the night of the car incident. They then asked about the voices which were commanding Shane to get rid of everyone who had let him down. When asked if he was obeying them, he said “I try not to but it’s getting harder”. When asked what happens if he doesn’t obey, he said, “They tell me I’m a failure”.
The doctors, having checked when he was first prescribed Seroxat and when the deterioration in his condition was first noticed, decided that he must be taken off Seroxat immediately. The 30mg dose was reduced to the lowest possible for a few days and Olanzapine was given to help cope with the voices. Due to a shortage of beds, Shane returned home with us.’
After a horrifying ten days or so, Seroxat was out of Shane’s system. We felt such a sense of relief that at last Shane seemed more in control of his actions – but far from well. Of his time on Seroxat he would say that he was convinced that he was changing into a completely different person and could do nothing about it. Once all traces of Seroxat had left his system he felt that he was far more normal although still suffering bouts of very low mood.
Our Precious Drug
That should have been the end of the story but it was far from finished. As a warning to others that keeping NHS staff safe was a priority for the court, the Judge handed down a prison sentence of over two years as the result of the car incident. What a pity that a warning to others about these mind-altering drugs was not given too! That time spent in prison did very little to help Shane mentally.
Whilst he was there, we made contact with David Healy who came and assessed him and offered the view that Seroxat had definitely caused the out-of-character behaviours that Shane had suffered. This news meant so much to Shane, although it has taken him years to fully believe the truth of Dr Healy’s words.
Once he returned home, having lost his relationship, his independence, his career prospects, still on the Olanzapine prescribed in July 2002, and still hearing voices, he tried to adjust to his new life. Despite all that had gone on Shane had completed his coursework and attained the required standard. How he managed it we do not know. That fact, that normality would return periodically, was one of the hardest parts of dealing with this – both for us and for him.
Unfortunately, his fears of those voices and their commands caused very many relapses and psychiatric unit visits. Each assessment would either change a medication or increase the dose. Nothing helped in any way to support him with his fears.
In 2013 he became very ill and was, eventually, admitted to the psychiatric unit for ten days for further assessments and medication changes. He was told that he’d had a manic episode so was put on two medications mainly used for bipolar disorder. We feel that it was either akathisia or drug toxicity and not a manic episode, as it was rather similar to the Seroxat incidents but without the rages.
The two new medications simply made matters much worse – causing weight gain, desperate fatigue and a range of problems like crumbling teeth. To this day, he remains on those two medications.
Hearing Hope
In 2015 he had a chance to start seeing David Healy routinely. David suggested trying a Hearing Voices group to see if that would help. His voices remain, there isn’t a day that they are absent, but the fear has gone and he fully understands them. That has made such a difference to his life.
He has also managed to reduce his medications dramatically and, once out of lockdown, hopes to continue on that journey.
He now lives semi-independently once again and has a dog to keep him company. He remains dependent on us as his energy levels have been seriously affected by all the medications. He is now on a further medication for high blood pressure and is awaiting a hospital appointment to do with his heart, as a higher dose of the blood pressure tablet fails to stabilise the erratic blood pressure readings.
He now believes David Healy’s words that he does not have and never had a mental illness and that all of his troubles were caused by Seroxat, following which his progress has been hampered by all the other prescriptions which have been given since those three months of sheer hell.
It is shocking that a medication, taken as prescribed by the doctor, can ruin a life in this way. Shane’s lack of energy – ‘exhaustion’ is not a strong enough word to describe it – means that he’s unable to work and financially relies on benefits. Even the smallest task carried out on a certain day means that he’s unable to do anything for the following day or two. Mentally he is far more alert now that he is on a fraction of the previous medication although there is still a way to go yet.
He still has a wish to “give back for all the help I’ve had” and to this end, with my support, he set up a peer support group for anyone withdrawing from antidepressants – rather like Hearing Voices. There should be meetings once a fortnight which Shane feels he could manage. Unfortunately, despite widely advertising in our local area and due to a lack of support from doctors, we have so far failed to attract enough attention to bring together a group but are still hoping that eventually more interest may be shown and now with Zoom maybe we can attract interest with international speakers.
Shane’s hope is that no one else suffers in the way that he did from simply going to a doctor for support in his hour of need.
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The image below speaks for itself.
For a history of the image above see In the Name of the BBC and In the Name of the BMJ
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Lord knows, enough has been written about this terrible, terrible drug that we seem unprepared for any more surprises –
Shane, my heart goes out to you.
How GlaxoSmithKline have got away with this, by just paying financial penalties for Paxil is truly unbelievable. 2002 was quite the year for Seroxat, you and me both –
It was always sustaining that several UK lawyers were on to this, but at the end of the day justice was not served. How it was not served will always be a mystery for me. To be blunt, if David had been on the stand as the Expert Witness, as planned, despite Mark Harvey being idiotic about this, there would have been a very good chance of some success. Being felled at the last wicket was almost unbearable when in the US, Baum Hedland were leading the way forward with a series of strikes.
There is enough evidence to sink a battleship with Shelley Jofre and Panorama spilling the beans, the story of two studies with 329 and ghosting, the heartbreaking testimonies from parents of deceased children, the endless litany of press reports from people like Evelyn Pringle, Sarah Boseley, various high profile psychiatrists Glenmullen, Breggin, Gøtzsche . David is the one who has years of experience with Paroxetine, in particular, and who has never stepped back from addressing one of the greatest scandals of our time.
The UK has failed to deliver.
It makes no sense. There you are, a young man with everything to live for who has organised his life the way he wants it and BOOM, the swallowing of a pill called Seroxat and your life is completely taken away from you. And not just taken, putting you through the most horrendous assault course that anyone is expected to survive. You got out the car and had a cigarette, that is the only bit of this that made me smile; I did something similar when my car was almost used as a weapon of self-destruction.
This won’t be the last time we hear about Seroxat, the Seroxat Story will run and run Forever and Ever and aren’t we lucky to have a place to put it and aren’t we lucky that Shane and Mary are able to tell it.
Thank you both for all the ‘putting back’ for that which has been so cruelly taken while the top-tier of GSK are reaping their rewards…
Akathisia Awareness is Suicide Prevention
@Deedoherty2
https://www.davidalton.net/2021/03/04/in-the-first-11-months-of-last-year-nearly-360000-antidepressants-were-prescribed-to-youngsters-under-the-age-of-18-total-bill-for-prescribed-items-dispensed-over-five-year-period-more-than-9mnear/
The peer and former MP said: ‘This is the drugs problem we talk too little about.”
Indeed…
The ‘user movement’ began with people like Shane and yourself Mary as I am sureyou know,-,setting up to help others and to help change the system, sadly against all the odds . Wishing you all the best for your project when it becomes possible again And thank goodness for people like Shane. I am thinking right now of the many people I have admired including some I have lost, collectively as, The Shanes. Most of the real grass roots self controlled groups I was involved with have disbanded partly because there was a need for professional involvement when it came to specialist knowledge , but they were unwilling to be educated by mere ‘users’ rather than become the ‘know alls’. The original founder of hearing voices was a man called Alan – fierce and independant ,it was run almost in secret by word of mouth initially He has been written out of history by now very sadly. An exceptional psychiatrist, Suman Fernando psychiatrist turned up of his own accord to small meetings in a London basement. Extended groups used to meet up for social reasons and to share information such as who to avoid in the system ,lists were kept by Alan.: how to cut drugs and too often for support and demonstrate anger after suicide of friends. Too Often lives were taken to avoid forcible long incarcerations after describing voice hearing and injection with harmful drugs. This group was the first to share experience of how to deal with their individual voices by not being afraid of them and using strategies which are now well known – but not by all healthworkers who still think the ‘solution’ is to try to drug out what many people, not all of course, can find a valuable part of their lives.
What’s changed is mainly small groups have been subsumed into the proliferation of charities and government or health authority funded schemes. All of them semmingly needing offices, expensive meetings national and international, paid workers, cttees, ever more consultations ,research studies, expenses for unpaid workers/fundraisers, trustees and so on. A simple google search will show how many – it’s almost the current ‘caring’ industry.
This sort of jargon actually highlights how things have changed – ‘Lived experience of suicide’ ‘targets; ’10 actions’ ‘expressions of interest’ – But if this is a way of educating from a position of surviving a suicide attempt …. from ‘lived experience’ its as near as it can get to really knowing how it is for people who decide to kill themselves Even a suicide note cannot really describe the tipping pont. Or as it is described in officialese a ‘completed suicide’
National Suicide Prevention: Lived Experience Panels Expression of Interest
In August 2018 the Scottish Government published its new Suicide Prevention Action Plan: Every Life Matters. This sets out ten Actions to help reduce the country’s rate of deaths by suicide. It has a target to reduce the rate by 20% by 2022.
As one of the lead partners in supporting the Scottish Government to achieve its aims, SAMH (Scottish Association for Mental Health) are pleased to invite expressions of interest from people across Scotland to take part in the new National Suicide Prevention: Lived Experience Panel. We are working with our partners Support in Mind, Samaritans Scotland and Penumbra.
The new Lived Experience Panel will provide an important platform for people with lived experience of suicide to share their valuable insights and experiences by working alongside members of the National Suicide Prevention Leadership Group, to implement the ten Actions of Every Life Matters.
We want the Lived Experience Panel to help ensure that:
People at risk of suicide feel able to ask for help, and have access to skilled staff and well-coordinated support.
People affected by suicide are not alone.
Suicide is no longer stigmatised.
Those bereaved by suicide access better support.
Through learning and improvement, we minimise the risk of suicide by delivering better services and building stronger, more connected communities.
We want the Lived Experience Panel to include:
Those who have previously attempted suicide or who have experienced suicidal thoughts/ideas.
Those who have lost a loved one to suicide.
Family/loved ones who support someone who experiences suicidal thoughts/ideas.
People from key risk groups.
People from a variety of geographical areas and diverse and cultural backgrounds.
A core group of 10-12 lived experience representatives upon which the NSPLG can call upon to inform their work to deliver the Suicide Prevention Action Plan.
If you are interested in becoming a member of the National Suicide Prevention: Lived Experience Panel or would like more information about it. Please email Livedexperience@samh.org.uk
I’m having trouble staying awake and paying attention at the moment, I had the Pfizer vaccine about a week ago and it appears to have saddled me with an unearthly fatigue. I think the vaccine fatigue is fairly standard but it probably doesn’t help much if you are already a bit low in the vim and vigor department due to to ssri withdrawals.
If I didn’t drink coffee I think I would be asleep most of the time at the moment.
I wish someone like David Healy could help my son. I am convinced his condition has resulted from the antipsychotics he has been on for sixteen years now. But his clinicians insist he has schizophrenia. My son has a BSc in computer science, but now can’t even have a conversation.
My thoughts are with you. In our experience, your gut feelings are far more likely to be correct than the clinicians’ diagnosis. Shane has steadily improved with every reduction in his psychotropic drug intake. In fact, he has now completely withdrawn from one of them – that leaves roughly a third of the other antipsychotic to withdraw at some point in the future if possible. It will only be possible with full cooperation from the psychiatrist. David Healy provided for his reductions so far from that drug – Shane is hoping for the same support now that he’s back with his original team.
We know that the Shane of the future will never be the man that he should have been but, with the proper care and encouragement, his life has become worth living once again. That makes all our lives so much better.
Hello Peter – Sixteen years is a heck of along time and I guess your son must have had a number of clinicians who probably follow the previous one(s) which makes it difficult to get an independant opinion. I do know that some/most people accept the diagnosis but others like Jim Van Oss at Maastricht Uni reject it’s validity at all ,and there are the inbetweens, I guess if you have found the D H and Rxisk blogs you’ll have done a lot of research but wonder if you have you come across the work of Will Hall at Maastricht? It might provide some optimism. It’s a very lond document (on net) but here’s some extracts
MAASTRICHT WORLD SURVEY ON ANTIPSYCHOTIC DRUG WITHDRAWALSEPT. 11 2019 PROGRESS REPORTWILL HALL, MAASTRICHT UNIVERSITY SCHOOL FOR MENTAL HEALTH AND NEUROSCIENCE WILL.HALL@MAASTRICHTUNIVERSITY.NL
WORLD SURVEY ON ANTIPSYCHOTIC DRUG WITHDRAWALRESULTS: DID PROFESSIONALS GIVE YOU HOPE? (N=2253)
WORLD SURVEY ON ANTIPSYCHOTIC DRUG WITHDRAWALRESULTS: GLAD YOU TRIED WITHDRAWAL? (N=2242)2062180
Overwhelming numbers of people said YES
WORLD SURVEY ON ANTIPSYCHOTIC DRUG WITHDRAWALSURVEY NEXT STEPS▸Continuing to prepare and analyze data using STATA ▸Consolidate into publication ▸Questions? will.hall.maastrichtuniversity.nl +1 (413) 210-2803 ▸Thanks to everyone for your involvement and support!
I am not sure where any follow up since 2020 can be found yet but Will has been very approachable by e-mail before. He has also written
… Harm Reduction Guide to Coming Off Psychiatric Drugs This and other ‘ forums show that tapering can be tried with anti-psychotics resulting in successfully coming off them altogether or to using some medication at a certain level found acceptable by individuals – with the usual cautionary advice that every one is different. Tapering is more sophisticated nowadays so hopefully you are right about the meds and they can be tapered
Another study
sciencenordic.com
The 30 per cent of those who came off their medication did so of their own accord. There is nothing in the system that says you should try to stop your medication at a certain time when diagnosed with schizophrenia.
Some schizophrenia patients can cope without medication
New study challenges our understanding of schizophrenia as a chronic disease that requires lifelong treatment.
f
To this, can I just add (especially for you Peter) that it was Shane himself that decided to reduce his medications. He, and I, had repeatedly requested an experimental reduction which always fell on deaf ears. Each time that he was admitted to the psychiatric unit there was a huge puzzle that seemed to go on as to what exactly was going on with Shane’s “treatment” that was not lasting more than a couple of months. This always resulted in either a change of meds or an increased dose. NOTHING WORKED.
Would I have been brave enough to push as hard for reductions without David’s input? I don’t know. The fact that David confirmed my feeling, that Shane’s meds were NOT at the “low dose” which was the stock answer given here, certainly gave me the reassurance that I needed to fully support Shane to go ahead and give it a try. It was just our good luck that David was available fairly locally and willing to give Shane his attention at clinic – for which we, as a family, will be forever grateful.
Without David’s support, would Shane have taken it upon himself to trust that reducing was the way forward? I don’t know – but I do know that there was a change in Shane almost immediately as he felt LISTENED TO and BELIEVED for the first time in this long, exhausting journey.
Peter, you and your son seem to be in a similar predicament inasmuch as your feelings do not match the diagnosis of the “clinicians”. It obviously has to be your call – yours and your son’s decision to stay with the given route or to detour along a pattern of withdrawal.
If we can provide anything which could support you in making that decision, I would be willing for you to request my email address from David and contact me in that way.
We run an ‘antidepressant withdrawal group’, at present by zoom meetings, where we discuss progress made and tips for coping with withdrawal. WE CANNOT HELP ANYONE TO PAVE THEIR PATH TO WITHDRAWAL – that would have to be done by your son’s doctors. Should you wish to join our zoom meetings, we could allocate a space of time to attempt to answer any questions that you may have, if that could provide a ‘half way house’ to support you in making a decision. To join us, again you would email me in the first instance, then Shane would email you details of the meeting.
We wish you well as we know exactly how exhausting your journey is.
A Modern Tale of Perfidy and Comeuppance
(A “Fiction” inspired by an article in the September 17, 2015 issue of The Chronicle of Higher Education)
Twenty First Century Snake Oil Salesman
September 18, 2015
By Baum Hedlund Aristei & Goldman PC
https://www.baumhedlundlaw.com/blog/2015/september/twenty-first-century-snake-oil-salesman/
‘hornswoggled by Big Pharma’ …
This is what Makes the Samizdat Series :
https://samizdathealth.org/
How to be a Scaremonger – Reflections on BBC Panorama’s study of the Aurora mass murders
https://hitchensblog.mailonsunday.co.uk/2017/07/how-to-be-a-scaremonger-reflections-o-bbc-panoramas-study-of-the-aurora-mass-murders-.html
I thought the programme quite properly did not make any such definitive suggestion as has been alleged against it. It simply drew attention to the very strange history of the killer, producing a timeline of evidence about his behaviour following the prescription to him of an SSR antidepressant by a psychiatrist, and following the increasing of that prescription, and following his cessation of the drug afterwards.
Several psychiatrists (not the prescriber, who chose not to give an interview) were interviewed. They differed about the meaning of this.
Their differences were fully and fairly shown. Interestingly, one psychiatrist engaged by the prosecution (but not called to give evidence) did not dismiss the idea that the drug Holmes had been taking could have affected his behaviour in ways that might have made it easier for him to kill. The doctors disagreed about whether such drugs could continue to have an effect on the user weeks after he had ceased to take them. I tend to think that the view that these effects can continue was more strongly supported by the interviewees, than the counter view that the effects disappear.
One of those interviewed was Professor David Healy, and you would be well advised to read this astonishing account of what has happened to him because of his sceptical stance on the subject of SSRIs
“The best of it is when the snake oil salesman crowed: “Well, they didn’t pin it on me!”
What a great legacy…
It can still be difficult to get prescribers to read the literature but it can be useful to have it as back up Some of those who encourage withdrawal can’t or wont take on people outside their catchment areas but there are services in different parts of the UK who are supportive. John Read works in E London
Attempting to discontinue antipsychotic medication: withdrawal methods, relapse and success
Article
Larsen-Barr, Miriam, Seymour, Fred, Read, J. and Gibson, Kerry 2018. Attempting to discontinue antipsychotic medication: withdrawal methods, relapse and success. Psychiatry Research. 270, pp. 365-374. https://doi.org/10.1016/j.psychres.2018.10.001
And
Open EPUB
Service-user efforts to maintain their wellbeing during and after successful withdrawal from antipsychotic medication
Miriam Larsen-Barr, Fred SeymourFirst Published January 31, 2021 Research Article
https://doi.org/10.1177/2045125321989133
Article information Open epub for Service-user efforts to maintain their wellbeing during and after successful withdrawal from antipsychotic medication
And
enEnglish
Mad in America SCIENCE, PSYCHIATRY AND SOCIAL JUSTICE
Gradual Tapering is Most Successful for Withdrawal from Antipsychotics
Mixed-Methods study explores the experiences of antipsychotic discontinuation among service users
Bernalyn RuizBy Bernalyn RuizOctober 19, 201832
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A mixed-methods published in the journal Psychiatry Research surveyed individuals who had attempted, at least once, to discontinue taking antipsychotic medications. Fifty-five percent of participants reported successfully stopping, and 50% reported no current use. In the findings, a gradual approach to withdrawal was positively associated with successful discontinuation and was negatively associated with relapse, suggesting that gradual withdrawal (more than one month) is a more effective method of discontinuation.
The authors write that, “When considered in conjunction with the longitudinal research and studies exploring psychiatric medication withdrawal in general . . . discontinuation is a legitimate choice that requires and justifies appropriate support.”
Persons prescribed antipsychotics often make adjustments to their medications independent of their prescriber or attempt to discontinue the medication on their own. As the authors point out, 60-80% of individuals with schizophrenia spectrum diagnoses report discontinuation.
Additionally, in other studies, as much as 55% of patients who were on APs stopped taking their medication without consulting their prescriber, and 41% withdrew abruptly. Of those patients that discontinued the drug, 78% experienced withdrawal effects, and 21% completely stopped taking APs. Studies of AP use have found that those who discontinued AP treatment had better long-term functional outcomes and lower rates of relapse than those with continuous use. While discontinuation can result in better long-term outcomes, the process of discontinuation can come with numerous withdrawal effects including, somatic, emotional, and cognitive effects as well as psychotic or manic relapse.
The authors of this study sought to elucidate the association between gradual withdrawal methods, withdrawal effects, and successful outcomes across different diagnoses. The authors also aimed to explore how people manage discontinuation. To do this, a mixed-methods (qualitative and quantitative) study was conducted via an online survey of adults (n=105) who were taking or had taken antipsychotics for at least three months and had at least one attempt to stop taking antipsychotics.
Among other demographic data, participants were asked to identify the primary symptoms they were experiencing when they began taking antipsychotics, medication history, treatment history, and the number of attempts to discontinue and age at those attempts. Participants were asked: “What was the outcome of your most recent attempt to stop taking antipsychotics?” and “are you still taking oral antipsychotic medication?” Participants were also asked about their method of discontinuation and (slow reduction over time or abruptly stopping) and the withdrawal effects they experienced.
Thirty-five percent of the participants had received a bipolar diagnosis, 18% schizophrenia, 28% other (unipolar depression, anxiety, obsessive-compulsive disorder, post-traumatic stress disorder, personality disorder). Only 48% of participants reported speaking with a doctor about their most recent attempt to discontinue, 55% successfully stopped taking APs, and 50% reported no current use.
Participants who identified as successfully stopping described experiences of improved psychosocial well-being, as captured in the quotes below:
“I experience no psychosis and only occasional anxiety […] I am (reasonably) physically healthy, extremely mentally healthy, working and enjoying life”
“I manage my mental health well. I have occasionally visited [a] counselor since stopping the medication, but mostly use my support network for help now.”
Continued difficulties after successfully stopping were also reported such as ongoing mental health problems and unresolved adverse effects of antipsychotic medication. For those the participants who resumed the drug, they described hospitalization or a compulsory treatment order (CTO) or described returning to prevent hospitalization and mandatory treatment.
Others described changes to dosage, medication, or clinician, e.g. “changed psychiatrist, correct diagnosis and prescribed different drugs.” Additionally, some participants who resumed taking antipsychotic medication described accepting having to take antipsychotics, saying, “I have to stay on it for life I can’t cope without it.” Lastly, a subset of participants described having adverse events that affected their mental health, including losing a job, a relationship ending, or a growing sense of failure.
Half of the participants reported gradual withdrawal, while the other half reduced their medication abruptly (one month or less). Those who gradually withdrew did not report relapse, described successfully stopping, and were not currently using antipsychotics.
Gradual withdrawal over one month was positively associated with successful discontinuation and no current use. There was also a significant positive association between following a gradual withdrawal method and consulting a doctor. However, 47% of those who asked a doctor withdrew abruptly, while 52% withdrew gradually. Unsurprisingly, relapse was negatively associated with discontinuation and no current use.
Withdrawal Effects
Two-thirds reported unwanted withdrawal effects, 18% reported no withdrawal effects, and 13% reported positive effects. Some of the adverse emotional withdrawal effects included: anxiety and fear, low mood, sadness and depression, irritability and agitation, suicidality, and mood swings. On the physical side, withdrawal effects included: nausea, diarrhea, vomiting, headaches, unpleasant bodily sensations, appetite, and rapid weight loss, insomnia or disturbed sleep, shaking, sweating, and one person reported seizures.
Relapse
Twenty-seven percent of the sample reported relapse of psychosis or mania during withdrawal. Thirteen percent of those who discontinued gradually reported relapse while 34% of those who stopped abruptly reported relapse.
The authors conclude that “it is possible to successfully discontinue antipsychotic medication, relapse during withdrawal presents a major obstacle to successfully stopping an antipsychotic medication, and people who withdraw gradually across more than one month may be more likely to stop and to avoid relapse during withdrawal.”
Larsen-Barr, M., Seymour, F., Read, J., & Gibson, K. (2018). Attempting to discontinue antipsychotic medication: withdrawal methods, relapse, and success. Psychiatry research. (Link)
If it possible to get off some antipsychotics but there are some drugs like olanzapine, clozapine and quetiapine that it can be completely impossible to get off.
I’ve seen several remarkable people who had nothing wrong with them to begin with but who ended up on these drugs and had to give up in their efforts to get off.
DH
Most importantly, what changes are being made to STOP the medical culture from prescribing mind altering medicines, to people like poor Shane?
If they are creating more harm than good for many people, why does the medical culture still continue to prescribe these medicines, when other alternatives are not exhausted?
If it assists some people from committing suicide surely, the opposite side of these medicines inducing severe mental health issues for many people, must be taken into consideration, also.
The current culture is part of the problem.
We have some doctors who believe they have the ‘magic potion’ for all medical ailments.
If the healing profession, don’t take the time to understand why people are feeling down and out, those who are quick to prescribe may be doing more harm than good.
Once a false label is placed on a person, every other professional (including society), goes along with that dark label that ruins that person’s life for good! ~ It is like a bad tattoo that never goes away!
A lot of medical professionals, have ruined a lot of people’s lives and once the damage is done it is so hard to undo.
A lot of people who have had to survive an unjust system, are still answering to those who believe it is quite acceptable to bully and harass people who have spoken up about pertinent issues.
I am concerned that many clinicians still have a long way to go, in terms of understanding and appreciating the harms these medicines induce to many people.
There needs to be more EDUCATION and AWARENESS about akathisia or drug toxicity, that SSRI’s induce.
People need support not condemnation especially, when they have been to HELL and back from the harms these medicines can induce.
Will there ever be a day, when we can sit down civilly and discuss these concerns in a diplomatic way?
How many souls have to go through what poor Shane has gone through before any changes evolve?
Do you believe that people should go to prison if they were prescribed these medicines and did something that was out of character? It is no different than someone who is drinking alcohol or ingesting recreational drugs.
Is the legal system accommodating people who have committed atrocities whilst taking these medications?
The buck does not end with BIG PHARMA. It goes ABOVE and BEYOND the confines of society.
No one wants to open a can of worms as it may upset the apple cart!
Don’t shoot the messenger for revealing uncomfortable truths.
~ Julian Assange
Michael P. Hengartner, PhD
@HengartnerMP
“Contrary to prominent claims, we find no reliable evidence that antidepressants protect against suicide. Instead, it appears that antidepressant use may even increase suicide risk”.
New generation includes SSRI, SNRI and all atypical drugs (eg bupropion, mirtazapine). SSRI studies presumably biased because most conducted by authors with fCOI. Evidence of publication bias in studies with fCOI, hence many SSRI studies presumably selectively reported
This extensive study, including a comprehensive supplement with many additional analyses, was an international and multiprofessional collaboration. The study team comprised psychiatrists, psychologists, as well as experts in suicide prevention and public mental health.
https://jech.bmj.com/content/early/2021/03/07/jech-2020-214611.full
Yonder: COVID non-compliance, antidepressant withdrawal, probiotics, and GPs in China
Sian F. Gordon, GP and GP appraiser, Graeme Medical Centre, Falkirk
It is disappointing that, in an issue of BJGP devoted to mental health, the only mention of the increasingly recognised problem of antidepressant dependence is in reference to an article published elsewhere.
I have been in practice long enough to recall the Defeat Depression campaign of the 1990s. I recently came across some of the material distributed to GPs in support of this campaign,1 which was supported by both the RCPsych and RCGP, as well as the pharmaceutical industry. We were told that the then-new SSRIs were safe, effective and non-addictive, they corrected a chemical imbalance in the brain, and that GPs were massively under-recognising and undertreating depression. The professional consensus emerged that it was good practice to prescribe to anyone who had “biological symptoms of depression” for two weeks or more. The studies backing these assertions covered a standard 8 – 12 weeks.
Now we are faced with huge prescription numbers, driven at least in part by long term prescribing, for which there is a very flimsy evidence-base. Many people have developed discontinuation symptoms when stopping these drugs, been told by their doctors that these represent a relapse of their original condition and can now count the years over which they have been dependent on prescribed drugs.
The RCPsych has moved its position, as evidenced by its recent publication “Stopping antidepressants”,2 endorsed by the RCGP. This is welcome after years of denial from both colleges that there was a significant problem with SSRI withdrawal. The recent past president of the RCPsych recently told Telegraph Magazine “that prescription figure is high. However, most antidepressants are started by GPs”.3
This is important now. Not only are there large numbers of people who need help in coming off their medications, but we risk adding to their number if the stress and exhaustion of COVID-19 and its aftermath are also subjected to the seemingly irresistible pressure to medicalise human distress. General practice, and the RCGP in particular needs to resist the urge to defensiveness, learn the lessons of experience4 and show leadership in addressing this problem.
References
1. Pitt B. Down with gloom! Or how to defeat depression. 1993. Publisher: Gaskell
2. Royal College of Psychiatrists. Stopping antidepressants. Available at: www.rcpsych.ac.uk/mental-health/treatments-and-wellbeing/stopping-antidepressants.
3. Levy M. The rise of ‘McMeds’: Are antidepressants becoming a fast fix? 2021. The Telegraph. Available at: www.telegraph.co.uk/health-fitness/mind/rise-mcmeds-antidepressants-becoming-fast-fix.
4. The Independent Medicines and Medical Devices Safety Review. First do no harm. 2020. Available at: www.immdsreview.org.uk/Report.html.
https://holeousia.com/2018/09/01/crappy-branded-stuff/
The Seroxat Lamp – Click …
https://bjgp.org/content/71/703/76/tab-e-letters#yonder-covid-non-compliance-antidepressant-withdrawal-probiotics-and-gps-in-china
recovery&renewal Retweeted
Mark Horowitz
@markhoro
Such an important letter in the BJGP. How do we redress the issue of massive over-prescribing of antidepressants and help those who need help to come off them to get off? And how do we offer other solutions to people and GPs to avoid doing this again in the future?
British Association for Counselling & Psychotherapy
Enabling conversations with clients taking or withdrawing from prescribed psychiatric drugs
Guidance for psychological therapists
December 2019
This guidance was facilitated by the All-Party Parliamentary Group for Prescribed Drug Dependence (APPG for PDD) in the last parliament by bringing together the main professional bodies representing psychological therapists in the UK, with key academics and professionals.
This guidance was funded and steered by BACP, British Psychological Society (BPS) and United Kingdom Council for Psychotherapy (UKCP), in conjunction with the APPG for Prescribed Drug Dependence Secretariat (all members of the Council for Evidence-based Psychiatry (CEP)), and the National Survivor User Network (NSUN).
Aims
The aims of the guidance are to:
support therapists in deepening their knowledge and reflection on working with clients prescribed psychiatric drugs such as antidepressants and antipsychotics
summarise the main effects, adverse consequences and possible withdrawal reactions for each main class of psychiatric drug
invite therapists to familiarise themselves with core issues relating to the role of psychiatric drug use (and withdrawal) and the implications this has for clients in therapy
be relevant to therapists from a wide variety of theoretical models
provide information for therapists on key questions and concerns relevant to their therapeutic work with clients who are either taking or withdrawing from prescribed drugs in order to enable them to decide whether, and to what extent they will use it in their work
potentially reduce the impact of issues associated with taking or withdrawing from psychiatric drugs on clients
Key issues and implications
Drugs have been the mainstay of psychiatric treatments since the 1950s. It is assumed that the major types of drug used in psychiatry work to reverse, or partially reverse, underlying disease progress in a ‘disease-centred’ model. This guidance finds little evidence to support this model of drug action.
Where psychiatric drugs produce helpful effects, they are best thought of as a temporary tool or coping mechanism that can be a precursor to psychological change
The guidance aims to demystify legal and ethical concerns that therapists may have. For example, it establishes the difference between giving medical information and giving medical advice and is clear about the ethical considerations involved. This is a deliberate attempt to broaden therapists’ perceptions of what lies within their competence by providing relevant evidence and information.
Download this publication at
http://www.prescribeddrug.info
FAQs
Q1 What’s the purpose of the guidance?
Public Health England’s report published in September described a steep rise in prescriptions (which have broadly doubled in the last 20 years) which means that most psychological therapists now work with clients who have either taken or are taking or withdrawing from psychiatric drugs. However there has been a lack of summarised evidence, information and training about the impact of these drugs on clients and on therapy itself, and this constitutes a growing problem whatever the modality or therapeutic setting. The guidance aims to provide evidence based information that will empower and support conversations often already taking place between psychological therapists and their clients within the frame of therapy. Therapists will need to decide for themselves whether, and to what extent, they wish to use this information.
The recent survey of 1,200 practising therapists revealed that the majority felt ill-equipped to manage such issues in the therapeutic setting, with 93.1% reporting they would find it ‘useful’ or ‘very useful’ to have guidance to help them work more confidently with people either taking or withdrawing from psychiatric drugs. By supporting the creation of this guidance, the endorsing bodies are taking responsibility for offering support to their members on the front line.
An example of the kind of information provided is that current evidence shows that 50% of all patients withdrawing from antidepressants will experience withdrawal effects, with 25% describing these as ‘severe’. If such experiences aren’t recognised as being possible withdrawal effects, drugs can be mistakenly reinstated on the assumption that an original problem has returned. It is believed this may be contributing to the increased time people are now taking such drugs. If a therapist is aware of the possibility of withdrawal effects, not just when someone stops taking them but even if they miss a dose, they may have the opportunity of flagging this to a client who can then discuss it with their prescriber.
Psychological therapists are also potentially well placed to support a client who decides, with their prescriber, to withdraw from their drugs.
This guidance relates to prescribed psychiatric drugs including antidepressants, antipsychotics, stimulants, tranquilisers, and anxiolytics.
It does not tackle prescribed painkiller/opioid use or any illicit or recreational drug use and any associated problems. Naturally, such hard and fast distinctions may belie clinical complexity, given some clients may present with multiple prescribed and non-prescribed dependencies.
While this guidance advocates the importance of informed client choice based on full information about potential benefits and risks, it does not advocate psychological therapists telling their clients to take, not take, stay on or withdraw from psychiatric drugs. These matters should be left to the prescriber and client to decide. This guidance is not making the case that psychological therapy should always be used alone without drugs or that drugs should never be used – there are times when they are helpful.
Q5 What’s the relationship of the organisations involved in the creation of this guidance?
In the last parliament the All-Party Parliamentary Group (APPG) for Prescribed Drug Dependence facilitated the creation of this guidance by bringing together key professional bodies representing psychological therapists in the UK with key practitioners and academics.
The British Association for Counselling and Psychotherapy (BACP), British Psychological Society (BPS) and United Kingdom Council for Psychotherapy (UKCP) have collectively funded and steered the creation of the guidance in conjunction with members of the APPG for Prescribed Drug Dependence Secretariat (all members of the Council for Evidence-based Psychiatry (CEP)), and the National Survivor User Network (NSUN). The above professional bodies, including in addition the National Counselling Society (NCS), endorse the guidance and will promote it to their members and relevant training organisations.
The guidance has been developed in conjunction with and reviewed by experts by experience (clients, carers, therapists and campaigners).
The APPG is distributing the guidance and hosting a website for this purpose, seeking to make it as widely available as possible both in the UK and, where appropriate, internationally.
Q6 Why are only BACP, UKCP, BPS and NCS involved?
The APPG for PDD’s aim was to reach as many psychological therapists as possible and so approached the four largest non-modality specific organisations that between them have 80,000+ members.
The guidance initially covers working with individual adults. The parameters of a project must be drawn somewhere, and ours reflect pragmatic constraints rather than any implied grading of the relative importance of the topics omitted.
Q9 Why is this guidance just for psychological therapists? Will there be any for other professional groups?
It is clear from PHE’s report that more services are needed to support people effected by prescribed drug dependence, and it is hoped that other professional groups will consider what additional guidance they might develop for their members. After the election the APPG for PDD secretariat would be pleased to talk to any such group interested in developing their own guidance.
Annon quoted:
An example of the kind of information provided is that current evidence shows that 50% of all patients withdrawing from antidepressants will experience withdrawal effects, with 25% describing these as ‘severe’. If such experiences aren’t recognised as being possible withdrawal effects, drugs can be mistakenly reinstated on the assumption that an original problem has returned. It is believed this may be contributing to the increased time people are now taking such drugs. If a therapist is aware of the possibility of withdrawal effects, not just when someone stops taking them but even if they miss a dose, they may have the opportunity of flagging this to a client who can then discuss it with their prescriber.
.
I am left speechless……………………………..!
Left in the hands of the prescriber?
What if the prescriber does not understand or appreciate the implications of how these medicines impact each person? Every patients medical history varies.
My concern is if patients are left in a lurch and serious complications take place without any support or care?
Every clinical situation presents challenges and using a guideline that ‘fits all’ could = disastrous outcomes. There are no hard fast rules for every person.
It becomes problematic, indeed!
Endorsing guidelines that have no evidence of being beneficial for each and every individual patients = recipe for disaster.
It’s so hard for me to read these comments, let alone the articles. My heart goes out to Shane, and he seems to be on a path to recovery. Thank God! As one diagnosed, fraudulently, I may add, as mentally ill and drugged for 35 years w/ECT’s to treat the drug induced crippling depressions, followed by a cold-turkey Klonopin withdrawal that my mental healthcare workers said was ‘just fine’ to do, they then denied my severe withdrawal symptoms leaving me to die at home, alone. Less than a year later another round of cold-turkey Effexor, Trazodone, Lithium withdrawals (this time, my choice although very unwise to do. But I was extremely desperate & uneducated about withdrawals from my mental healthcare facility that I was actively enrolled in.) Where as my K-pin withdrawal induced SEVERE suicidal ideations, the E/T/L withdrawal induces SEVERE homicidal ideations. It’s a miracle I didn’t murder my targeted people, instead I admitted myself to yet another god-for-saken Psychiatric Hospital where I prayed I would get the help I needed but only FORCED more psychiatric drugs. From being poly-drugged for decades I’ve lost everything in my life: my job, my sanity, my house, even my children, and then it went after my soul. Happily, completely drug free for 6 years now, although I do have permanent cognitive impairment and continued sleep disturbances, but work with them, instead of against. I have my entire life now, I own my thoughts, feelings and behaviors, not Psychiatry. Once all the drugs removed nor do I find any ‘mental illness’ they claimed I had so long ago. So at the age of 60 I finally have a life. And it’s a good one. And I hope & pray that everyone else out there, once they’re able to find loving people (unlike what I got at my mental healthcare facility or family members) that actually do love & support them can find a safe & humane way to withdrawal from their medications, if they so wish to do so. I just want to share a book I’ve recently read that’s very informative. Smoke and Mirrors: How You Are Being Fooled About Mental Illness – An Insider’s Warning to Consumers – July 20, 2020 by Chuck Ruby (Author) 5.0 out of 5 stars – and I see I’m not the only person to give this book a ‘5 star’ rating on Amazon.