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i got brain damage from electroconvulsive therapy.

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sue_cunliffe1
sue_cunliffe1

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.

16 likes, 269 replies

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  • sandy46484
    sandy46484 sue_cunliffe1

    Posted

    For those of us with privacy concerns, even though the FB group is designated private, it doesn't feel very safe. I wish there were other options for group support. I think if one can find a great neuropsychology counselor who validates the harm that was done in the guise of "First do no harm," that is great. Most ECT victims are older women. I am over 50 and it is not so easy to accept this after having decades of a high level career.
  • laura08496
    laura08496 sue_cunliffe1

    Posted

    today is the first day i am connecting on line with other brain damaged people because of ect treatments. i recieved my first round in 1999. i am feeling overwhelmed because i don't know what to expect or how to react. i came here just to check things out. i found it all by myself. i've been looking for many years. and no one takes me seriously. or maybe they just don't care. i have ptsd because of the treatments, and for being in a damaging day program for five and a half years. i have a lot of fear and anger inside of me. i'll never be able to work again. i dont have a support system. writing this is terrifying, because no one ever believed me. i was always told that i wasnt working hard enough in my recovery. they mistakenly felt i was just insecure or being lazy and not wanting to do much with my life. i have a fear of too many people on top of me doing the same thing.
    • sue_cunliffe1
      sue_cunliffe1 laura08496

      Posted

      Hi. My reply is being moderated because I put a link in it for you. You are not alone nor mad. In the mean time try this great page on facebook..

      I'm a member.Surviving electroshock-Global support group for ECT survivors.

      I'd you don't get my reply message me again.

    • sue_cunliffe1
      sue_cunliffe1 laura08496

      Posted

      Hi. My reply got removed. As you can see from this page your are not alone in all of your experiences. From the trauma of your ECT. From people refusing to acknowledge or diagnose your brain injury. To blame it on your medication or your mental illness or to say that you aren't trying hard enough.

      Yet everything you experiences is true and real and very frightening.

      What you need to do is to see a neuropsychologist who specialises in brain injury, who can diagnos you and support you. I am confident that my second lot of ECT was given to treat the brain damage caused by my first lot of ECT because she didn't understand the damage ECT can do.

      It is really hard..I am 11 post ECT and I can't work. However I got the help I needed and have managed to move on and build a life. But like all electric shock survivors none of us were told that this could happen. But it is still happening now. I started this page because I knew people out there like you needed to be able to link up with others for help. Do join facebook SURVIVING ELECTRIC SHOCK GLOBAL SUPPORT GROUP FOR ECT SURVIVORS. it is as. closed group where you will find understanding and support.

    • laura08496
      laura08496 sue_cunliffe1

      Posted

      dear sue, thank you, thank you for replying. i can barely believe that others have been feeling the same expieriences that i've felt all these years. it has sickened me, knowing now that doctors and everyone else wouldn't believe me. they all made me think i was wrong about  everything. and now i'm reading that i was right. my symptoms, my fears, all the verbal abuse....was/is real. everything i've expierianced, was true. i am not a hypocondriact. just a bad speller. reading a few of other's symptoms, has triggered a dreadful panic attack that has left me in bed for a day and a half now. this is all too much for me. i am in shock. and there is rage in me too. my chest hurts. i want to cry, but its not happening. its just stuck inside me. i have to backup a bit here. i need for things to slowly come inside me, a little at a time....i am not handling all this so well
    • sandy46484
      sandy46484 laura08496

      Posted

      I hope you don't mind me commenting. I think you're going through the "waking up" trauma that we all experience. It is terrifying and normal to feel this anger at being betrayed and lied to by those who took an oath. People do recover from this. If you can find a professional to acknowledge the harm and validate you this is so important. Post traumatic stress is huge for most of us so if you can find someone to help you with that. It's really hard to come to terms with being lied to by doctors but it can be done.
    • sue_cunliffe1
      sue_cunliffe1 laura08496

      Posted

      We have all been there. Hold on to this that now your are in a better place because you are not alone. You are believed. Your life can get better.....different but better because you can learn about your problems and lean how to manage your life. Join the facebook page that I recommended. If you have any one you can trust show them this page and the facebook page too do that they can understand that it is real. X
    • laura08496
      laura08496 sandy46484

      Posted

      dear sandy, i will never mind you commenting to me.  in fact, i thank you for taking the time out for sharing. and being kind
  • Aurebu
    Aurebu sue_cunliffe1

    Posted

    Hi Sue.

    My spouse is Bipolar. and got some real bummer treatment at the hospital in Östersund in Sweden. We moved there in 2013, and first thing we asked for was a psychiatric contact for her. Having a professional to talk to when she's down or has mania is the only thing that really works for her.

    After over a year of promises and lies from the local hospital, my spouse started to get a depression. As she is trained to from her home country, Finland she submitts to the ward to lock the outside world out, and get proper therapy for a week or two when teh depression goes away. She doesn't speak Swedish, and her English is very poor, so she should have someone there to translate for her. In fact the doctors are bound by Nordic law to provide one. They didn't, and without understanding what she was saying to them, they made their own ideas in their heads, and gave her ECT.

    I managed to stop the treatment after five sessions. By then the social office was brought in on the case, and the police, because they refused to listen to both her protests, and mine.

    The result was that she now suffers from both long term and short term memory loss, She also gets almost daily headaches. the last one lasting for three days. She never had a headache in her life before she got ECT.

    She's got some minor personality changes, problem consentrating, and chronical tiredness. She also lost the ability to speak English, and lost a lot of her native language, Finish. She's now managed to get back most of ehr English, but is still struggling to find words both in Finish and English.

    I've spent the last year reading up on ECT, and gone through just about all research papers that exist on the matter, and found that they are all either severely lacking of professionalism and that the few that have been conducted taking all factors in account are completely ignored.

    I've also met several of the patients that claim it helped them. It may have helped them get out of their depressions, but they all have typical signs of cognitive damage, and some memory issues as well. Many are not aware of their problems as they don't remember how they where before ECT, and others do remember, and have huge problems coping with their diminished capabilities. Not being able to work is the most stressing for many of them. The results are more frequent depressions, lack of will to live, and constant struggle to manage to cope from day to day.

    It is scary how doctors just keep their doors to their offices locked, and seem to be unaware of the damages they have created, while we who work with the victims from day to day see and know far to well that ECT doesn't help anyone in the long run.

    • sue_cunliffe1
      sue_cunliffe1 Aurebu

      Posted

      It's really good to have a carers point of view too. It's ready to forget that ECT doesn't just affect the patients.
  • TJ_4444
    TJ_4444 sue_cunliffe1

    Posted

    I had 12 ect treatments in 2010 and 2011.

    simply put...

    I have lost many years of  memories of my family growing up.

    I get lost all the time and in a constant state of panic that I will get lost. I stay home. 

    I believe that my entire personality, likes and dislikes have changed from what I have been told. 

    I used to own and run a business that I "gave away" during my "treatment". It was well established and making a decent living. 

    I get overstimulated by sound, light and noise.

    I have migraines, neck and back problems and more. 

    The depression is now about who I was and how productive I was... not anymore. It has ruined friendhsips and relationships because I cannot remember who or why I know a person. 

    I have insomnia. 

    I feel lost and scared much of the time. 

    Reading novels for me is a disaster and I used to read, again from what I have been told, all the time. 

    Shopping, cooking, banking, finances.... overwhelming. 

    writing this list overwhelming. 

     

    • laura08496
      laura08496 TJ_4444

      Posted

      TJ, i've had shock treatments 16 years ago. reading your list of what life is for you now, is making me sick and angry. i can barely write this reply because i am in shock and my hands are trembling. doctors and counselors have made me feel like i was making up all my sideeffects, all these years. i cant explain how devistated i am at this moment, realizing that i am not the only one who has been suffering. till this day, my doctor is still silent when i tell him about my life being unliveable. counselors and therapists have made me feel crazy. but now at this moment i have this dreadful feeling inside, that they have been lying  to me all this time. they have always made me feel like i was complaining for attention.... that all the things i complained about werent true. i cant see what i am writing because i cant see through these tears of mine. i dont know what to do this very moment. i feel like killing myself. but i am too chicken.  but my heart has just broken. i dont know what i am suppossed to do next. this is so overwhelming. what am i going to do next? i dont know what to do. i dont expect you to have answers, i am just out of my mind right now. thank you for listening to me if you've even got this far into my comment. i am so sick inside.
    • sue_cunliffe1
      sue_cunliffe1 TJ_4444

      Posted

      H. Sorry I didn't reply. What country are you from.

      I'm looking to get people from the UK working together.

      You sound just like I did in everyway.

    • sandy46484
      sandy46484 laura08496

      Posted

      Perhaps there is a network of professionals who will validate the harm that was done to you, which is the first step to healing. One of the hardest part in this coming to terms with being lied to by those who took an oath to "do no harm." Then being re-traumatized by the medical community by not believing you. For you can find a neuro psychologist who specializes in PTSD, that would be a great start.
    • Aurebu
      Aurebu sandy46484

      Posted

      Hi Sandy.

      The problem with ECT is that psychiatry is earning big bucks on it and will not achnowledge the damages it does.

      They have made dozens of research papers. all with very slim selections of patient groups, and very unprofessionally performed as they leave out dozens of factors, and they also all have very short span of reaserch period. Al these reports are made such that it looks like ECT is completely harmless, and that it helps the patients.

      A recent sham ECT research was conducted in Sweden that showed that ECT did not help the patients at all. They had however taken in count the narcosis, and since the narcosis was given both to those getting sham ECT shocks (no actual shock) and real ECT, they figured out that the narcosis was the factor that was actually helping the patients.

      The result, well you can guess. The publication said nothing about ECT at all, and was published as "Narcosis helps against depression". The fact that it was actually a Sham ECT study that showed no difference between sham ECT and the real thing was completely left out. They didn't want it to go public.

      All other Sham ECT studies (There are about a dozen of them), show only marginal differences at best between real ECT and sham ECT. And then only within the first two weeks after ECT has been given. This is the period when the patient is feeling the immediate damage from ECT the most. The headaches, dissorientation, complete loss of short term memory, and being completely docile.

      The few doctors that actually will admit that ECT give brain damage are the few that are opposing against using drugs, ECT or psycho operations. The Psychiatric community regard them as outcasts and freaks.

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