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.
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.
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.
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.