Lived Experience Forum

[getbetter]

Hello I will search articles on ect but I wanted to ask if anyone has any recent experience and effects over time, months years. it is becoming an option for me that my psychiatrist wants to use and it's getting to the point if I don't do it she will section me because my quality of life and risk is now so bad, I don't use the term rock bottom as I believe there is no bottom for these illness, memory effects worry me the most.

[Queenie]

Hi @getbetter I've had ECT a number of times and would recommend it (if I had to have it again I would because it was literally life saving on both occasions). Yes, there is some short term memory loss, but my memory came back and I can now recall everything including from the times I actually had ECT. It is painless and relatively safe (I say relatively because it is under a general anaesthetic and there are always risks associated with that). All I had left over from the day of treatment was a slight headache (treated with paracetamol) and tiredness from the anaesthesia. 

On the occasions I've had courses of ECT, both times I was written up for 10 treatments (given 3 times a week) so I was in hospital for a number of weeks. I began to see results after 3 or 4 treatments. 

[Fancy_Pants]

Hi @getbetter

It sounds like you are very resourceful and have thought a lot about this, has your psychiatrist given you any information about the potential benefits and side effects that can result from this form of therapy?

I know that some people have spoken about this before here and I am wondering if they or others have any ideas or suggestions @Chris I know that you were thinking about it at one point @Appleblossom? and @kenny66 talks about it here 

[getbetter]

hello @Fancy_Pants I have done much research on it and it is effective for a lot of people who like the psychiatrists say "i don't know what your worried about, in my research Australian psychiatrist are very bad at highlighting all the possible adverse effects, and they give it about 4 times more often than say scottland my phsyc says about a 5% chance of long term memory problems, but if your read patient lead surveys from ECTAS in the uk, the body that monitors ect use, (we dont have one) patients report 30% have long term memory problem, there are various factor of course, my sister also worked with a nurse who had ect and she had to stop work due to memory problems, something else I find gobsmaking is on the concent form it says "your doctor will describe to you verbally the possible negative effects, WTF, verbally are you kidding, there would no process that guarantees the same information to to all patients and that they can refer to after the procedure if they can't remember what he said verbally, so I am going try record it with my phone,

[supernova]

Hi @getbetter,

I'm not sure if you've wandered across them, but the both NICE Guidelines on the use of ECT and the NICE Guidelines for Depression in Adults (which come out of the UK) seem to be quite conservative in their recommendations of it's use, reserving it for situations of complex, treatment resistant depression, or situations where there is significant risk to life, and they do raise some alarming points about issues of consent and the potential for long-term side effects, as you point out, particuarly this paragraph in the ECT Guideline:

"In addition to testimony from user groups, a systematic review of evidence from non-randomised studies relating to patients' accounts and experiences of ECT was also considered. This provided important evidence on the experiences of individuals receiving ECT, particularly cognitive impairment and its impact, and the validity of neuropsychological instruments used in clinical trials. There was evidence that the measurement scales used in RCTs do not adequately capture the nature and extent of cognitive impairment, and qualitative studies have indicated that the impairment may be prolonged or permanent. Additionally, there was testimony that individuals are not provided with sufficient information on which to base a decision regarding consent. Also, some individuals are unaware of their rights to refuse treatment, or may feel unable to do so because of the perceived threat of detainment under the Mental Health Act."

Source: https://www.nice.org.uk/guidance/ta59/chapter/4-Evidence-and-interpretation

It's a very individual decision, but I agree that you should definitely be able to weigh the risks against the benefits in order to properly consent to the procedure, and you should be able to do so without feeling pressured or as though you don't have other options.

Hope that helps. 

supernova.

[getbetter]

Hello @supernova, yes the uk has very good guidelines on the use of ect and use it about 4 times less than we do, we seem to very trigger happy with it in AU and have very little research or data on which to make descisions, all the industry here will say is it works, it also makes the industry a lot of money, bearing witness to that is the declaration on the concent form asking if you have any financial interest in the procedure, if it helps people, well and good but lets get data collected on positives and negatives so we can make informed choices.

[Glorianna]

@getbetter Had it, was an involuntary patient. Am better because if it. Was in a psychosis 2 years back. No lasting effects. Slight memory loss immediately following the procedure but since recovered. Recovery is slow though and processing words/music/entertainment can be very difficult following release. I wasn't able to look at anything more than magazines for 3 months (to my utter frustration).

Go with what your health professionals decide for your case.

Had I been under circumstances to research ECT I feel like I would have your same fears but ultimately you should trust your care team.

Glorianna

[Chris]

 My experience has been negative.  August last year my psychiatrist put me in hospital for twelve treatments over four weeks. I was told that i probably wouldnt feel any benefit untill the eighth or nineth treatment. I would have short term memory loss but it would eventually return. The positive affect lasted barely two weeks and i was back to feeling very suicidal. He then wanted me back in hospital for another twelve rounds. Again it only lasted a few weeks. I continued to feel suicidal. I believe that it is not common for ect not to work. The memory loss i found hard to deal with .Somethings i had no recollection of.  I couldnt remember how to get to places i hadnt been to for a while.

I have a new psychiatrist (my other one moved interstate) she told me there is a less invasive treatment. It stimulates the brain. That im afraid is all i know about it. It might be worth investigating. For me i wont ever have ect again. Its been a big learning curve being so suicidal for months. Thankfully i am now on the mend.

[Appleblossom]

No @Fancy_Pants I have never thought of ECT for myself.Nobody has suggested it either. My issues are situational. Having my mind zapped wont change the stresses I deal with.

My story is so complicated its easy to get confused.

[Fancy_Pants]

My memory failed me, Sorry @Appleblossom, thank you for sharing