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Electroconvulsive Treatment (ECT)

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 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
•    disorientation 
•    problems thinking e.g. “they fried my brain”
•    fatigue
•    “wooziness”, “groggy”, dizziness 
•    nausea 
•    drooling 
•    looking like you’d “had a stroke”
•    muscle stiffness
•    feeling shaky
•    inability to eat
•    intense sleepiness
•    hallucinations

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.

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.

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They kept assuring me that I would feel better but I wasn’t convinced. And I remember going through treatment being absolutely petrified and, I remember being put to bed after treatment and I remember having a really, really bad headache. 
What happened at [name of hospital] was that after your treatment you were wheeled back through a ward in front of everybody, after your treatment, but you would come in and you’d may be, be drooling, or you’d be I suppose you kind of looked as if somebody who had had a stroke or something and the knock on effect was that it really affected the other patients. So much so that one of the boys that I’d met there, he was actually a soldier who had been in the first Gulf, that he totally flipped out and thought that they’d harmed me somehow. 

The headaches were like something that I’ve experienced, sort of before or since. It’s completely indescribable. The headaches that I had afterwards. I do think that ECT is given that there should be a way of getting the patient back into bed without have to trail them through in front of everybody. Because everybody is in hospital because they’re ill and it becomes really frightening for them, and it may be that one of these patients that are witnessing somebody coming back are going to need that treatment which is going to make it even scarier 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.

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.

Age at interview: 50
Sex: Female
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[Husband’s name] was always terribly disorientated after he’d had his treatment to the extent that he didn’t even know that he’d received his treatment. He would be taken into another room where he was given something to eat and drink by the nurses after, after I’d taken him home he would have no recollection at all of having eaten or drunk something. He would always come home and have a sleep for at least two or three hours. And that’s where as I mentioned earlier his short term memory is completely shot to pieces because if you were to ask him what happened in his life during those ECT treatments he would have no recollection of those. But some of his memory would come back if I reminded him of what had happened.
 

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.

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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.

Age at interview: 51
Sex: Female
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Well yes, I was discharged. I went home and about a week afterwards I went for an outpatient maintenance ECT treatment at my local hospital. And that is the worst ECT I have ever had and I didn’t have any more, maintenance ECT I refused to have any more after that. Maintenance ones anyway. I think they totally fried my brain, because I can remember going there. The preparation and everything. It was a Friday. And the next thing I remember is Monday. I have absolutely no memory for the rest of Friday, Saturday, Sunday. 

And yet apparently I walked home. I had someone fixed up to give me a ride home. But they couldn’t get hold of them and I asked if I could walk home apparently and they let me walk home which I think was a big mistake [laughs]. Because I was not at all with it. And I walked home, and my daughter when she saw what I was like. I must have been disorientated or something and she called various people. My psychiatrist and GP and whatnot and they admitted me, you know, to recover from this one ECT and the next thing I remember is on Monday. I don’t remember anything for about three days really. So that put me off a bit [laughs].
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.

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.

Age at interview: 38
Sex: Female
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During the time that I was having it, a friend of mine would come down to the hospital and we’d go running together and I certainly on some days ran with her after having ECT [laughs] and I certainly went at the school, because I’m quite, what’s the word? Competitive. And they had the school sports then. They had the mums race and I did quite well a couple of years before, so I ran in the Mum’s race having had ECT and almost won but I kind of tried to lunge myself over the finishing line so that I could beat the person next to me and fell over unsurprisingly, as I’d had ECT earlier in the day [laughs]. So I didn’t win. But it was incredible what I could manage to do afterwards. Because I think I was so dissociated from what was going on that I just kind of did whatever I liked. 
Memory Loss
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.

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.

Age at interview: 56
Sex: Male
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But really to be very honest with you, apart from the effect on short term memory I think ECT is a treatment which is very, very effective and has very little in the way of side effects. I mean I did worry about whether there’s any long lasting effects of ECT like maybe brain damage or dementia or something like that, but my consultant psychiatrist has strongly reassured me that there is absolutely no evidence whatsoever that ECT makes you more likely to develop either Alzheimers disease or dementia, and in actual fact, she’s told me that’s there’s actual medical evidence, and published evidence, that untreated episodes of severe depression are much more associated with dementia than treatment with ECT. So if you don’t get adequately treated and you have long periods of recurrent depression which is severe, you’re much more likely to develop dementia.
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.

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.

Age at interview: 49
Sex: Female
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And how, how were you sort of feeling for the rest of the day then?

A bit sort of zonked out. And it, like I said earlier, it definitely does affect your short-term memory. You know, I’d struggle to remember what had happened, you know, that day or the day before. So that’s a bit scary.

Was it just sort of events that you struggled to remember or was it sort of names for things?

No, not names for things. I could remember that sort of thing. But it, more events, things that had happened in the last few days. 

And what was the emotional effect of that?

Of, of having memory loss?

[mhm]

I don’t really remember, to be honest. I think I’ve felt more emotions about the long-term memory, memory problems that I’ve had, which I attribute to ECT, although doctors will tell you that’s not possible. Because, you know, big chunks of my life are now missing, some of which were probably important or worth remembering [laugh]. So I feel quite sad about that, you know, round when my son was born and, you know, there’s big bits of it I don’t remember, you know. He was young and I don’t remember some of his milestones. 

It’s quite an odd question to ask in a, a way. Sort of what, how do you know that you can’t remember as the whole…?

Well, because people tell me things, people will talk about things and I’ll say, “Well, I don’t remember that.” You know, not disputing that it happened but just not remembering that it, either not remembering it at all or, well, yes, not remembering it at all as...

And were these sort of whole months at a time or just small events?

It would be weeks, weeks that I wouldn’t remember or, you know, certain events that happened. And I, and people would say, “Oh, you remember so-and so?” and I would say, and I don’t think it’s just because I’m getting older, because this was happening when I was in my 30s, you know, 30s, late 30s and, you know, dementia hadn’t set in then [laugh]. But, yes, so that does bring some sadness, to be honest, and a bit of frustration because, you know, you don’t like to forget things.
 

When Beattie had ECT over thirty years ago, she lost 7 years of her memory, which included the birth of one of her children.

When Beattie had ECT over thirty years ago, she lost 7 years of her memory, which included the birth of one of her children.

Age at interview: 63
Sex: Female
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And when I, in 1970 they gave me ECT when I was depressed. I had psychotic symptoms. And it actually took away seven years of my memory which never came back. And I don’t remember my son being born, I don’t remember the 1960s and that was in 1970.

And I feel like an incomplete person because of it.

What impact has it had in your life, you were saying the memory loss?

Well it bothers me you know, because there’s no one alive now that I could ask about it really. My parents I can’t ask them they’ve gone. And it’s rotten to not remember the sixties and my son’s birth and everything else.
 

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.

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.

Age at interview: 49
Sex: Female
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But the one particular thing that’s hit me recently that my daughter has given me that picture of her Dedication and I can remember who her godparents were. I can remember the songs that were sung at the Dedication, but the picture, the building is completely alien to me, the posters on the wall, and I’m just so frustrated thinking “Why can’t I get that memory back?” And I blame that on the ECT. You know, my first daughter said before I became depressed, so it was a memory before the ECT, but I think well of course I don’t remember, I don’t know how much memory loss I’ve had because you can’t remember what you’ve lost [laughs].

And, you know, even now I go back to things and the memory is just gone, and personally I think ECT is awful. I think it’s barbaric. I don’t think they understand how it works. I know my GP, my current GP thinks it’s very good and it does work. But I just, to me personally it doesn’t, and go back to previous patient, you know, perhaps the time out is what actually does work. 
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.

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.

Age at interview: 52
Sex: Male
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I don’t know whether the ECT actually helped her or not. I mean they say it kick starts, re-kick starts the brain for them and it would take, it seemed to take too long and then to turn round and say it worked, I don’t think it did.

And I know you talked to me about the shock of finding that there was memory loss in the short term, what’s been the effect on memory, if any, in the longer term?

She still doesn’t know or can’t remember the things that she’s done with the kids. I mean whether that is because of that I don’t know, she couldn’t remember, it’s easier for her to remember things prior to her illness even now than it is since. I’ll always have things repeated numerous times and it gets, to be told oh I’ve, I’ve seen such and such a body today and I’ve seen such, and you know full well that you’ve heard this story seven times today but it happened six months ago, that I just sit there now and say yes, yes [inaudible speech] yeah, yeah anything for a quiet life. But still she tells me things as if it happened just, but I know full well it was months ago, in some cases years ago.

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.
 

Jenny says that while she was having ECT she was in a daze. She was less driven to harm herself, but there were things she couldn’t do like baking, as her mind was foggy and it affected her sense of self.

Jenny says that while she was having ECT she was in a daze. She was less driven to harm herself, but there were things she couldn’t do like baking, as her mind was foggy and it affected her sense of self.

Age at interview: 56
Sex: Female
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I think it was a, it had some sort of buffering effect. I stumbled through those few months in a complete daze. And I was safer in a daze, I was less driven to do harm to myself, less driven to do impulsive things. But it, it meant probably that the challenge of self-belief and self-esteem was more difficult, because you couldn’t even, you couldn’t even make a cake, let alone do anything else, because everything was just in a bit of a sort of foggy mist really. So I don’t think I felt like a real person. And I would have said that although I felt less anguished, I didn’t shift very much from believing myself to be fairly, fairly convincingly a waste of space because I did nothing useful and I couldn’t function very well at all. But, but I, I think it would be difficult to know really quite how much of a part ECT played in that. I wouldn’t want to look as if I was blaming it for something that may have been a corollary of lots of losses at the time. So, but I think the thing it, it definitely did was made me less clear thinking and less coordinated. So I was less likely to throw myself off a motorway bridge or that sort of thing, because I just wouldn’t have been well enough organised to do those things, I don’t think. 
 

Julian had a kind of high after the ECT treatment but then went downhill after two weeks and was ‘more suicidal’ than he’d been before, although lithium helped him recover.

Julian had a kind of high after the ECT treatment but then went downhill after two weeks and was ‘more suicidal’ than he’d been before, although lithium helped him recover.

Age at interview: 47
Sex: Male
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All I remember is that I was kind of well. I mean he described it as being kind of high. Whatever, it had quite a beneficial effect that was very short-lived. And, so it was like being given a tantalising look into what it would be like to be better. And in a way that was very difficult to feel, it was very difficult to cope with, that when I then went downhill again, having reached the treatment of last resort, well, that was it, I was finished. And I probably became more suicidal than I’d been before. In fact I guess I’m quite lucky to be here really, yeah, I guess it was quite close to just finishing it.
 

Sunil finds now that he gets hypomania, though he is not sure if that is as a result of the ECT or the anti-depressants he is taking. His wife finds this very difficult and it has stopped him going back to work.

Sunil finds now that he gets hypomania, though he is not sure if that is as a result of the ECT or the anti-depressants he is taking. His wife finds this very difficult and it has stopped him going back to work.

Age at interview: 56
Sex: Male
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But I did find out, from my consultant and my wife that during this latest episode of illness which is now into its eighth month, just over seven months, I had a total of 39 ECT treatments which is a fantastically huge amount of ECT and my last ECT treatment was given on New Year’s Eve, and I’ve been reasonably well since the beginning of this year. But in actual fact whether it’s due to the fact that I’ve had ECT or whether it’s due to the fact that I’m on two different anti-depressants in addition to the ECT I have actually been a little bit on the high side. In other words slightly hypomanic. And never severely, but it has actually caused a lot of problem, because my wife can cope with me, no matter how severely depressed I am, and even if I’m suicidal she can cope with me. But the one thing she finds very, very challenging and difficult to cope with, is when I’m hypomanic. Because that’s when you tend to be more argumentative, and all the rest of it.

Anyway even if I’m only very slightly hypomanic, she finds that really difficult. And in fact the clinical psychologist I’ve been seeing, we’ve got a scale for people with bipolar illness where you actually monitor your mood on a daily basis and you grade it on a scale of plus five to minus five, with a middle zero being when you are completely normal mood, neither high nor low. Minus 5 is when you are in the depths of depression and plus 5 is when you are not just hypomanic, you are actually manic. Plus 5 is a very severe illness which requires hospitalisation. And I think in my estimation, even the highest that I’ve actually been in the last month has been only plus one no more than that, although my wife thinks I’ve probably been a little bit more than plus one, perhaps something like plus one and a half.

And that is the main reason why I’m not actually back at work yet. Because had I been given the choice, I would have actually gone back to work at least a fortnight ago. But I have actually now finally got a fit to return to work note from both my general practitioner and my psychiatrist. So hopefully the people at work will not really stop me from going back.


Last reviewed January 2018.

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