i got brain damage from electroconvulsive therapy.

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In 2005 I was given 22 lots of electroconvulsive therapy. It left me with brain damage that means I will never work again. I was lucky because I got support from a neuropsychologist who allowed me to understand and come to terms with my problems. ECT can be used to great effect. However some people like myself end up severely and permanently affected. I want to use this place to link up with those like myself. So that we can support each other.  I don't say ect shouldn't be used. But people thinking of it should understand what can happen. The Information given about ECT side effects doesn't go into details, they talk about memory problems. Actually it affects far more than that. It causes cognitive impairment. 10 years on I need 12 hours of home help a week to help me care for my 3 kids. I tire very easily and some days I am able and feel intelligent. Other days if I have pushed myself and not been able to have a midday nap I struggle to do the most basic of tasks. Some days I'm not well enough to drive at all. Other days I will drive short distances. I was a doctor and well never work again. 

Please let me know if you have had similar problems. Or if your thinking about ECT please make sure that you understand what could happen to you. It could mean permanent I'll health on top of your existing problems.I am no longer depressed. It wasn't stopped by the ECT but by psychological input to support me out of my coercively abusive marriage.

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  • Posted

    One more thing... I don't judge labels at all but I received my ect because I was in a ton of pain from a fall and back neck injury and depressed over the loss of a loved one. I am not one to take or react to pain or any medication at all. I was then labeled "treatment resistant" .... thus leading to ect... My life forever changed then. 
    • Posted

      Thanks for posting. You sound like so many of us...but knowing that your are listened to and believed by others is really important. I did not link with anyone for years. It made me feel sane.
  • Posted

    We are seeing why it is so hard to be heard when our own comments are deleted while seeking support from other survivors. Vulnerable people need to be warned about what exactly they are consenting to because right now, there is no informed consent.
  • Posted

    Here in the US we are trying to keep the FDA from making the shock devices about as safe as an electric toothbrush. Some advocates are running into trouble getting our message heard through social media because of moderation issues. There is a big machine behind shock therapy.

    We will not be silenced.

  • Posted

    My 45 yr old daughter has been getting ECT for 2 yrs every other week! She now cannot hardly walk or talk. So scared.
    • Posted

      We are USA in Kansas. Our first neuro appt in June. She just started being difficult to understand. She kept being depressed and angry so kept giving them.
  • Posted

    What "type" of ECT were you "given" and what was the time frame you received it over?

    Do you have trouble feeling emotion, creating and recalling new memories, or learning new things? I cannot recall what I have done in the last 48 hours and that terrifies me.

    Has post traumatic stress or anxiety or depression been a problem after getting ECT?

    How long before you had ANY improvements? Did you actually forget how to read? How many years of your life were erased by this lunatic barbaric assault on your brain?

  • Posted

    hi sue

    ive had over 40 ect and suffer all the things you do the worse ones being the fatigue and the memory loss im due to see a neurolgy again tomorrow one out of my area im going to ask about a neuropsychogist im then going to start a legal action against my trust ive been fighting them for 35 years to listen to me i know my body better than them the minute your brain clogs my body stops as well il help your campaign any way i can

    • Posted

      Hi. I've hit a brick wall with my hospital. I'm taking a breath at the moment and thinking how to proceed.

      Where do you live?

    • Posted

      i live in west yorkshire today i was seen by south yorkshire i was told its best for me to see a neurophycologist and the main thing he said was i can not say 100 percent this was not caused by ect first time ever someone has said it hes ordered a mri scan so i now intend to proceed with legal action against west orkshire trust
    • Posted

      Any answers for questions above in previous post? I live in Canada and had 21 ECT from Oct. 2012 (10) and then July 2013 (11). Feeling very damaged, lost decades of memory. Can't make new memories. Don't think I can afford a lawyer. Does anything help with the injuries, loss of feelings, trauma?
  • Posted

    Hi Sue (and others),

    Thank you all for being here to talk about this.

    I received 36 sessions 2 1/2 years ago for treatment-resistant depression: first unilateral and then bilateral, when it wasn't having any benefit. I understand the memory loss part of this (I've lost about a year and a half prior to the treatments). However, I've had some lasting effects that I haven't heard anyone mention.

    Primarily, my libido is completely gone. It was always fairly high (both during times of depression and doing well). And when I do ejaculate, it happens almost immediately - which again, had never happened before the ECT.

    Apart from that, my sense or direction is gone, but I could see that falling under the umbrella of cognitive impairment. More generally, I've lost some of my sense of where objects are, it that makes any sense - I'm cumisier now, and have clipped a few stationary objects with my car (and can't parallel part, etc.)

    My main reason for writing is that I've never heard anyone talk about loss of libido (or functionality) as a side effect of ECT. I feel asexual now, and it's put a large a strain on my marriage. It's been 2 years now, and I'm starting to believe that it's never coming back. I just wanted to see if anyone has experiences that, or heard from anyone who has. PLEASE tell me I'm not the only one.

    • Posted

      I haven't heard of that.

      However I found that memory loss was also apparent in the way I felt about peopleI I couldn't remember the feeling of love. I still find it hard to feel love when I get really tired even now. I feel totally lacking in emotions.... Just hollow....

      But those emotions and feelings have returned.

      I was punch drunk by the end of it. I couldn't walk through doors without walking into frames.

      ECT damages many parts of the brain... That is reflected in the more diverse symptoms that you describe.

      Psychiatrists can't control the damage it does. They don't even know what it is actually doing.

      12 years on things are easier.... But I will never work again.

      But i have rebuilt my life and found happiness.

      I hope that helps.

    • Posted

      I had ect in 1962, maybe a dozen times. Prior to that, I seemed to be normal, but then suddenly started to mentally malfunction. Delusions, wild anxieties. My parents took me to a psychiatrist but I reacted violently to him and he told my parents to have me put in a state hospital. I was 16. I didn't resist it, not knowing what that might mean. As I remember it they started me on ect almost immediately and I realized quickly that I didn't like it or the hospital and needed to figure a way out. So I cooperated fully and was released after 3 months. After release I became bipolar but never sought treatment. Or medication. I just white knuckled through my life and now I am 70. The manic part of my condition kind of went away in my thirties, but I still have depression tendencies. I retired 5 years ago and enjoy not having to be social unless I want to be. I'm married but that may not last much longer. I recently read about ect and it sounded right. I've struggled with memory issues since ect and feel like I lost of lot of IQ points from it as well. I did well in school before but struggled after. I never saw a therapist after the ects nor have been on an anti-depressent.

    • Posted

      dear donjames,

      you've got twenty or thirty years left in this life. see a therapist and doctor for treatment. it could work for your depression tendencies. even if you've got ten or fifteen years left, they can be spent feeling better than now. your story is horrible. i'm so sorry you went through all that at such a young age. but you've managed to get married and work a job. even if that's coming to an end, you've accomplished a lot more than me. after my ect treatments, i lost some i.q. points also. i tryed going back to work, but after a year i had to leave. i can't work anymore.

      please consider even a consultation with a mental health worker. i imagine you've suffered enough all these years. there could be some left to enjoy. thanks for sharing your story, i don't feel so alone about those i.q. points. my family thinks i'm just stupid. we're not stupid. good luck with whatever you do!

      truly, laura

       

    • Posted

      What kind of therapy have you gotten and how do you feel it has helped you? Thanks for your good thoughts. Don
    • Posted

      when i was close to middle age, i got ect treatments for depression. during it, i was hospitalized for a few months, released...then relapsed, and then went back and got more. and then i went to a 'day treatment program' for about five and a half years. it was like being hospitalized, only i didn't stay overnight. since i have amnesia, i don't remember everything. and i should be glad, because those were the worst years of my life. i wasn't even that depressed before the treatments...a doctor talked me into them, and i trusted him. big mistake not researching it first.  after that program, i saw a phsychiatrist once a month for meds, and a therapist twice a week. its been ten years i've been doing that. the first six were horrible because they couldn't find the right medication for me. so my psychotherapy didn't work at all. i was miserable and thought of suicide frequently. i'd become so much sicker than before the treatments, and was angry because the doctors kept telling me and my family that i was not brain damaged, just depressed. very frustrating. i'd say ,within the last four years i'm on meds that are helping. suicide thoughts are down. but there is still a lot of anger. i feel like what could have been the best years of my life were destroyed. before the treatments i was well enough to work, and was planning on marrying. that all changed, i came back a different girl. and family and friends are still waiting for me to 'get well' again. like i was those years ago.

      so since i can't work and make money, i am relying on family and my boyfriend. he's the one i was supposed to marry. our relationship is different now. everything is different now, but i can't go back and change things, so i really do what i can to have some joy and fullfillment in my life today. i have a cat i adore, and since i'm creative, i like to draw. i can't read books like i used too, but i do like watching some television shows. i need to stop smoking and drinking and taking poor care of myself. have to start exercising. but i don't mind being alive so much these days. i have a great therapist who helps me navigate my issues and problems. and i pray too. i just try to make the most of what i've got now. life is precious, i know others who are suffering far more than me. i like to laugh a lot, i guess that's why i stick around. and miracles do happen. i just try my best to keep the depression under 'control'. if that's what it's even called. but i truly wouldn't be here if i weren't on medication and in therapy. i don't know how you got through life without it. give it a try. i don't think it will make your life worse. most importantly, don't ever be too hard on yourself. enjoy your retirement, i'm certain you worked hard for it.  make an appointment with your family doctor. they should have some good suggestions for you. you can look into group therapy and make some new friends. like i mentioned earlier, you still have enough time to have a better life. just consider it, okay? again, best wishes.....laura

    • Posted

      I got seen by a neuropsychologist who specialised in brain injury he helped me understand my injury.

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