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 is actually really nice’ right through to the extremely unpleasant e.g. complete disorientation or deeply upsetting such as the loss of treasured memories. Some only lasted in the short-term, like headaches and tiredness, others were long-term e.g. memory being ‘foggy’. Memory loss is the side effect that caused the most concern to people.
Apart from the side effects of having ECT, there were also suspected side effects from having the general anaesthetic and sometimes it was difficult to tell the difference. For example Dafydd said it was hard to tell how much of his wife’s tiredness was due to the effects of the general anaesthetic and how much was due to the ECT.
However, a few of the people we interviewed experienced little if any side effects of having ECT, and some pointed out the side effects of taking medication could be worse. John Z, said that he experienced no bad effects from ECT at all, and it was like having a cataract operation.
Immediate side-effects after having ECT treatment
The people we spoke to reported the following side effects immediately after the ECT treatment, which lasted only a short while (hours or sometimes a few days):
- fear, anxiety and confusion
- feeling strange afterwards, e.g. light headed, dissociated, numbing, ‘mixing up the emotions’
- headaches (which could be severe and ‘indescribable’)
- jaw ache
- memory loss surrounding their treatment time
- problems thinking e.g. ‘they fried my brain’
- ‘wooziness’, ‘groggy’, dizziness
- looking like you’d ‘had a stroke’
- muscle stiffness
- feeling shaky
- inability to eat
- intense sleepiness
Headache and jaw ache sometimes only happened following the first ECT sessions, and people felt their bodies adjusted better to treatment as they went along. For others, this was something they always experienced after having ECT. Kathleen said the dosage of her ECT made an impact on the severity of the side effects. When she first had ECT, the headache and jaw ache was so bad she couldn’t eat, but when the dose was reduced for the following treatments, the effects were not so bad.
Some people we spoke to said looking like someone who had ‘had a stroke’ and drooling was a very upsetting side effect both for the person having the treatment and for those who saw them. Annie and Lorraine said that seeing their mother after her first treatment was scary.
Yvonne remembers having terrible headaches, and felt that other patients seeing her drooling as she was wheeled through the ward after ECT could be scary for them.
People often found they were very sleepy immediately after their treatment and wanted to go to bed. Carys said that her daughter would sleep for up to twelve to fourteen hours afterwards.
Most people remembered having the treatment, sometimes in great detail and some were able to resume their normal activities immediately afterwards. But others did not remember having the treatment at all, or remember other things going on at the time of the treatment. Some were very disoriented and couldn’t find their room afterwards, or were unable to remember how they got home. Helen, who had her treatment in 1970 said she struggled to remember her own name after the treatment, her mind was ‘just black, like you’re in a different universe’.
Alka’s husband was often disoriented after his ECT treatments. He would not remember having had the treatment or being given something to eat and drink afterwards.
When Kathleen had maintenance ECT as an outpatient she felt highly disoriented and had no recollection of leaving the hospital alone or of the two days following the treatment.
Suzanne felt that memory loss was a price she paid for getting well again. Like others, she judged that it was worth it in the end. She also said there were other periods of her life she couldn’t remember and didn’t find this particularly unusual or upsetting.
Jane managed to compete in a school sports day event in the afternoon after having had ECT in the morning. But she says she felt dissociated from reality.
Most of the people we spoke to did experience memory loss following ECT. This seemed to be the case whether or not the ECT had had any effect on their mental illness. Frequently, the memory loss was judged to be relatively minor, such as forgetting people’s names, or not being able to find their way back to their room, or around their local town, and forgetting their passwords and bank pin number, or how to spell. These did come back to them in time, or once they were reminded. David Z found that although his ability to recall sometimes is ‘a bit fuzzy’ he’s learnt to deal with it and if someone reminds him it comes back ‘and stays back’.
People did worry about the long-term effects of ECT on the brain, e.g. problems thinking, and said that their doctors were likely to deny that long term effects were possible.
Sunil mentioned his own psychiatrist had found research suggesting that severe depression that is not treated was more likely to cause dementia than having ECT.
However some people, especially those who had ECT over ten years ago, did find they had lost memories of important events such as a daughter’s dedication, a surprise birthday party, a holiday, or the birth of a child. Not being able to remember events in their lives could be frustrating and distressing. Although a few suspected they might have lost unpleasant memories ‘I want to forget’ and asked themselves if that might have been part of their recovery.
Cathy has found long-term memory loss frustrating and sad. Big chunks of her life are missing, and she can’t remember the time when her son was born.
When Beattie had ECT over thirty years ago, she lost 7 years of her memory, which included the birth of one of her children.
Tracy struggled to remember some of her daughter’s Dedication and feels frustrated. ECT didn’t work for her and she thinks it is barbaric and it was taking time out that actually helped her.
For many, the memory loss was short lived, around the time of – or before – the treatments. Tania says that although she had not suffered long term memory loss, she does have ‘gaps’ in her memory from the months when she was receiving weekly or fortnightly ECT treatments (although this didn’t happen when she had less frequent maintenance ECT). Otherwise she says ECT has not affected her ability to think and write. Like others, she was concerned her thinking would be affected, but feels ‘sharper than [she’s] ever been’. Catherine Z said she is able to think ‘just as quickly and clearly’ as before the ECT.
For others the effects have been more permanent. Sue experienced long term ‘fogginess’, which she was told would go away, but it never cleared. She still has ongoing short-term memory problems, which are getting worse, though she does wonder if this could be related to her chronic fatigue and pains. Albert had ECT in the 1960s and wasn’t aware of the side effects of memory loss until recently. He said he suffered badly with memory loss and he had difficulties using his mind and that affected his life. He thought it was ‘[him] that was the problem’ but now believes it was a side effect of the ECT and has met others who have suffered long term memory loss after having ECT. Sunil says for him memory loss is the most distressing effect of ECT. On a daily basis his wife tells him about something that has happened in the recent past which he has no memory of. His wife keeps a diary so he can look back at what has happened in the last few weeks. Dafydd’s wife watches repeats of television programmes but has no recollection of having seen them before.
David Y doesn’t think ECT helped his wife. Now, twenty years on, she will talk about something that happened months or years ago, which she thinks has just happened.
As mentioned above, where the ECT had worked, some felt the memory loss was minor in relation to the benefits they got, or that the memory loss served a helpful purpose. Jane felt that although she doesn’t remember much of her own childhood or her son’s childhood, this was because her brain was used to shutting off painful memories ‘as a protective thing’ and not as a result of having the ECT. Others wondered whether the memory loss might have actually been a part of what got them better, because they had forgotten the bad things that happened to them. Helen said, ‘It’s so beautiful now because I can forget’. She has found innovative ways to get around the inconvenience of memory loss, like reading so that she remembers how to spell words or writing down the date every morning. Nevertheless, many people who experienced memory loss just found it difficult and upsetting.
Other consequences of having ECT
While some were neutral about the ECT experience, or even found it pleasant (one man looked forward to his ECT), feelings like a lack of control or having been abused during their treatment were profoundly difficult for others. Sue, who had been sexually abused in her childhood, felt that having ECT left her traumatised, and having the anaesthetic felt like she was being held down. She said abuse by members of hospital staff, and the feelings of powerlessness she experienced had long-term consequences for her and her husband. Tracy felt ECT did nothing for her except remove her memory and she called it barbaric.
While some felt included in their loved ones treatment, as a carer, Carys struggled with her own lack of control over the ECT treatments given to her daughter, and felt side lined and unimportant. Her daughter repeatedly ran away from the hospital and was incredibly unhappy and she still struggles with the feeling that she let her daughter down.
Some people who had bipolar disorder described experiencing a ‘high’ after the ECT. John Z, who was catatonic when he had the treatment, went high and ‘off the scale’ after his ECT treatment (see for more ‘How effective did people find ECT‘). Sometimes this was short lived and left them feeling worse than before.