Side effects of having ECT
ECT can have side effects. Most people we spoke to had some side effects from the treatment. Side effects ranged from the pleasant "being woozy...
How effective did people find ECT?
There is no guarantee that ECT will work for all people or for all kinds of mental illness. The National Institute for Health and Care Excellence (NICE – an organisation that provides guidance on the best ways to treat ill health in the UK) says that:
‘It is recommended that electroconvulsive therapy (ECT) is used only to achieve rapid and short-term improvement of severe symptoms after an adequate trial of other treatment options has proven ineffective and/or when the condition is considered to be potentially life-threatening, in individuals with:
- Catatonia
- A prolonged or severe manic episode’ (guidance TA59 last updated 1 October 2009)
There are variations in both the dosage of electricity that can be given during ECT, and the way ECT can be given (to one side, or both sides of the head). In any course of ECT that is given the number of treatments received and the gaps between these treatments varied.
The people we spoke to had differing views about how effective ECT actually was. Some people responded extremely positively to ECT, e.g. their mood lifted, they got a ‘sort of a buzz’, they felt calmer or they had less invasive thoughts about self-harm. For some, it was the only thing that worked. For instance, David Z had had depression since he was a teenager but had managed it. When it got worse in his forties, he found that anti-depressant medication didn’t work and that ECT was the only thing that lifted his mood. Although Enid had felt depressed a lot during her life, she only had ECT after she retired when she found that she couldn’t do anything and was crying all the time. She now has maintenance ECT from time to time and finds it helps her a lot – she had a ‘big dip’ in her mood when she stopped it. Tania found ECT ‘absolutely incredible’, although she had regular relapses and overall recovery has been up and down. After taking advice she had a tailored course of maintenance ECT which helped her stop taking a medication that was disturbing her sleep and her appetite returned and physical strength improved.
Sunil’s wife knew that anti-depressants didn’t work well for her husband and begged for him to have ECT. He says it is the only treatment that helps him when he is severely depressed.
John Z was catatonic when he had ECT and it was the only answer. Although he went on a high after the treatments he found it very effective and nothing like the film One flew over the cuckoo’s nest.
Enid had ECT as an inpatient and now has maintenance ECT as an outpatient. Along with dialectical behavioural therapy ECT has helped her improve her mood enormously.
When people were involved in the care of others who had experienced severe mental health problems, the sense of relief in finding a treatment like ECT that worked could be immense. People talked to us about how the people they cared for had often been unwell for a long period of time before ECT was offered as a treatment. Some, like Catherine Z, thought ECT should have been offered much sooner and not as a last resort. Annie and Lorraine felt that ECT had given their elderly mother her life back and couldn’t speak highly enough about the effect that ECT had had on her quality of life.
However, other people felt that there was no improvement in their symptoms from ECT. Some of the people we spoke to found that ECT didn’t help them at all, or the immediate effect soon wore off, and they needed medication to manage their symptoms. For others, while ECT was effective on some occasions, it was not effective at other times. Tracy suffered from post-natal depression as well as depression at other times of her life. She does not think ECT had any effect on her except to wipe her memory.
Even when ECT did not lead to a positive change in mood or wellbeing, it could still sometimes have distressing side effects (see for more ‘Side effects of having ECT‘). Some people described ECT itself as a distressing treatment to have (for more see ‘Experience of having ECT‘) and said self-help and medication worked better for them. Where the ECT didn’t work, some carers felt desperate and like they had ‘let down’ their loved one. Carys said ECT had not helped her daughter and ‘it was almost like another way of hurting her’, ‘quite cruel’.
Tristan felt huge relief when ECT appeared to work dramatically for his wife. However, his wife had a relapse 6 to ten weeks after the treatment and he thought that antidepressant medication helped improve her well-being in the longer term.
Tracy felt that ECT didn’t help with her depression and she would recommend people pursue other avenues. She lost a lot of memories and doesn’t think enough research has been done on the after effects.
How quickly did it work and what was the effect?
Many of the people we spoke to had 8-12 treatments of ECT before they experienced any effect. Recovery was a very individual process (see ‘Managing mental illness and recovery‘ for more). But some people who had had ECT when they were suicidal or catatonic described a sudden or striking change after their treatment. Tania said, ‘It was as if I’d switched back on and I’d come back to life again, and the screen had kind of gone’. Steve described his wife as having a ‘positive response’ within days of having ECT – showing signs of a ‘strong recovery’ within weeks. Catherine Z had 4 treatments over a short period and within a week was well enough for ‘home-leave’ and was discharged with weekly outpatient appointments after that. She describes ECT as the best thing that could have happened to her and she has not had a recurrence of her mental health problems in twenty three years.
But people said the treatment could have unexpected results and lead to other mental health problems. For John Z, who was later diagnosed as bipolar, after 8 treatments of ECT, he went from being catatonic to being high and “off the scale”. Sunil who had had dozens of ECT treatments says he now gets hypomania and can be quite argumentative, though he is not sure if that is from the ECT or the two anti-depressants he is taking.
Suzanne and her husband felt that ECT saved Suzannes life as before she had the ECT she had stopped eating and drinking. After having ECT, she got better quite quickly and was able to return to work.
Tania had been very ill and in and out of hospital and it took a while to come to terms with her depression. She describes the effect of the ECT as quite incredible: She just woke up and the whole thing had lifted.
For many others the effect was much more gradual, and it was only some time after the treatment that they, or those who cared for them, thought that ECT had had an effect. It was sometimes difficult for people to identify at what point any change had happened. People we spoke to talked about subtle changes such as becoming aware what year and day it was, becoming more active, or taking an interest in what was happening around them. Some remember feeling better only after they left hospital, for example, when they noticed they relaxed during a holiday with their family.
Jane suffered anxiety and paranoia before having ECT and had 19 sessions of ECT. She remembers going on holiday after the treatments and planning the next day and realising ‘there was a point in living’, but it was only much later she made the connection that having the ECT had made her better. After her first treatment, Kathleen reported a bad headache and jaw ache and so they lowered the dose and she believes they switched the ECT from both to only one side of the scalp, which she thought needed a longer course to work. She had twenty four treatments and, although she says it ‘saved my life’, her overall recovery was gradual.
The effect of ECT for Matt’s wife after the initial 7 treatments was hard to measure, but he noticed a definite change. It was not a change in her mood but in her energy level, returning to her talkative active self.
For Kathleen ECT had a more gradual effect. She found that she began to not have so many suicidal thoughts and that they were less intrusive.
If it worked once did it always work?
Many people we spoke to reported a return of their illness after having had effective ECT. While the effect of the ECT was only short-term, it had got them through a real crisis. However, not everyone who had an initial good response to ECT responded the same way after every treatment. When Kathleen had ECT after an attempted suicide she improved dramatically with few side effects. But when she went back for ‘maintenance’ ECT she had a bad experience. She was disoriented and didn’t remember walking home alone, or anything that happened during the three days following the treatment. She had to be admitted to hospital to recover (for more see ‘Side effects of having ECT‘).
Steves wife first had ECT in the 1970s and has had several courses of ECT treatments over the years. Steve thinks that although ECT does work, she now seems to need more treatments before she responds.
For some, interruptions in treatment (for example due to a change of consultant) made ECT less effective. Jane had had her treatment stopped and restarted when her consultant changed, and this affected how well the ECT had worked.
Matt felt that because his wife had had her ECT stopped and restarted it wasn’t as effective as it could have been. He found it very frustrating that a change in consultant had led to inconsistent treatment.
Other people’s reaction to mental health and ECT
People we spoke to had often experienced quite severe mental distress and found that other people didn't have a lot of knowledge about mental ill...