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Forums / Depression / ECT experiences?

Topic: ECT experiences?

11 posts, 0 answered
  1. jsm1974
    jsm1974 avatar
    58 posts
    27 August 2021

    I posted this question in another section as well, but I wanted to see if anyone has had any experience with ECT.

    I've been struggling with depression and anxiety most of my life and have not responded (at all, really) to medications. I've pretty much exhausted my possibilities there and ECT is meant to be quite effective. The risk of memory loss is in my case more like an opportunity, given recent events in my life, so I'm not too worried about that. As long as I don't still think I have my job and try to show up at work or something like that, I'm fine with the risk.

  2. Gabs_
    Community Champion
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    Gabs_ avatar
    94 posts
    27 August 2021 in reply to jsm1974

    Hi jsm1974,

    I haven't experienced ECT (as my psychiatrist did not recommend it for me), but I wondered if you could try TMS before ECT? Transcranial magnetic stimulation (TMS) is a non-invasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression.

    It's less invasive than ECT and has less of an impact on you after the sessions. I know a few people who have had ECT and found that it was quite a traumatic experience. However, when I was in hospital earlier this year (private psychiatric), there were a large number of people doing TMS, getting results and not having to deal with the ECT after-effects. ECT you have to go under anaesthetic and can be quite out of it after the sessions.

    Just something to look into.

    Good luck on your journey and let us know how you go.

    G x

  3. jsm1974
    jsm1974 avatar
    58 posts
    27 August 2021 in reply to Gabs_

    Thanks for replying. The only downside to TMS is that as far as I know it still isn't covered under medicare and I don't have private insurance.

    When you say "quite a traumatic experience", what do you mean? I think it would have to be seriously traumatic to outweigh feeling like you want to die all the time. After nearly 40 years of tolerating major depression and anxiety and having it ruin nearly every relationship (romantic and otherwise) that I've ever had, including my current marriage, I need to do something as meds are not doing anything at all (apart from one medication which gave me stomach issues).

  4. Gabs_
    Community Champion
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    Gabs_ avatar
    94 posts
    31 August 2021 in reply to jsm1974

    That's a bugger re TMS.

    I guess everyone's experience of ECT different and you'd need to get your own medical advice on the pros and cons, but one friend that had ECT was really unwell after each session and would have days after sessions where she would just walk around like a zombie. It was like she was just a body. And then she'd be back into having a session (2-3 sessions a week). When she finished her course of ECT, she said she felt like she suffered cognitive impairment and couldn't remember the last month (she said she just felt like she'd had a lobotomy).

    But that was her experience, and she felt that afterwards, it hadn't made much of a difference. I'm sure there are people who have had positive experiences, I just don't know any personally.

    I suppose at the end of the day, you are completely right. You need to weigh up the pros and cons, and if the outcome from ECT is better than what you are currently feeling, then it could be the right thing for you. It's about making an informed choice. Have you spoken to a psychiatrist about it and it's suitability for you?

  5. Nevergoodenough
    Nevergoodenough avatar
    29 posts
    16 September 2021 in reply to Gabs_

    Hi gabs,

    I had five sessions of ECT a few years ago and it didn’t work out well for me at all. Like yourself I’ve had pretty much lifetime severe chronic MDD, GAD, AVPD and ASD to top things off nicely. Been prescribeda lage range of drugs and spent 6 months as an inpatient over the past 5 years. My psychiatrist was running out of ideas /treatments that she could use and I’ve always said no to ECT but I was desperate. 

    Unfortunately there were a number of serious problems and I had to cut the treatment program from 12 sessions to 5. I had an adverse reaction to a drug in the first session and in spite of assurances in the patient information sheets that you will have no memory of the actual procedure, I remembered everything. And it was the most horrific experience of my life. On the fifth session the shock dosage was not appropriate and the muscle contraction was too strong. I really feel that I’m just one of these people that one off bad things happen to.

    The biggest problem was memory loss. I used to have a phenomenal memory, especially long-term but now there is a period of about 18 months that I have no recollection of it all and no recall. Initially I was told that can take time for this to wear off but it’s been four years now and nothing has come back. It’s like a big black hole from which nothing can escape. I wish I’d never had it.

    My psychiatrist will bring it up now and then because I have no other treatment options but I’ve told her I never have ECT again under any circumstances.

    Sorry for the rant 

    Mike

    1 person found this helpful
  6. Sophie_M
    Community Moderator
    • Works for beyondblue moderating these forums
    Sophie_M avatar
    5948 posts
    16 September 2021 in reply to Nevergoodenough
    Hi Nevergoodenough,

    Thank you for getting it tough with the forums and for sharing your story with us today. It sounds like an incredibly tough journey you have been on to find effective treatment, we are so sorry that you have had these negative experiences. 

    We also want to say that we think you are good enough. Sharing this story must have been difficult and you never know who will read this and feel less alone in their own experience. Thank you for your courage, honesty and strength. 

    We are here for you if you need us and you can call anytime on 1300 22 4636 to speak to one of our wonderful team. We are here for you, 24/7, you don't have to go through this alone. 

    Thankyou again for your post today, we hope that you conitnue to be an important member of the community. If you feel comfortable, you are more than welcome to keep us updated here on how you are feeling

    Kind regards, 

    Sophie M
  7. Sleepy21
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    Sleepy21 avatar
    4161 posts
    16 September 2021 in reply to Nevergoodenough

    hi nevergoodenough

    i'm really sorry for ur experience

    is your memory beyond that 18 months still good? i hav hope for u that your skills and intelligence (it comes through in ur post) will hold u in good stead for recovery.

    I have heard about ppl who have had a traumatic exprinc with ECT.

    Some thnk it is safe. I read a great article by someone who tried it - if you look up Big Feels Club, Newsletter, ECT it may show up there.

    I understand not wanting to try ECT again. I feel the same about SSRIs, and yet, they keep getting pushed by incompetent medical professionals. I wish I had complete say over my treatment. Ppl say that we, as patients, steer our treatmnent, but even subtly convincing or misleading patients to prefer or want a certain course of treatment (or trying to persuade them when they say no!) - in my opinion, isn't full "informed consent"

    Now my rant is over. Sending care to all.

  8. Nevergoodenough
    Nevergoodenough avatar
    29 posts
    16 September 2021 in reply to Sleepy21

    Hi Sleepy,thanks for your reply. My long term memory for ages ago ( from late childhood, high school uni, working etc) is still ok but since I became really unwell about 7 years ago and had to permanently retire from work, there is so much I can't recall at all.....no doubt from the truck loads of meds I have taken. I think its pretty upsetting for my wife when I look at a picture and I ask her where/when it was because in my mind I've never seen it and she tells me it was less than a year ago. Pretty sad, like everything about this sorry and what looks like permanent episode in my life.

  9. Nevergoodenough
    Nevergoodenough avatar
    29 posts
    16 September 2021 in reply to Sophie_M
    Thanks Sophie for your supportive words. Unfortunately my handle is 100% accurate....everything is never good enough for me because of my faulty brain and hideous thinking patterns, and I'm never good enough for anything because of multiple mental illnesses that have wrecked my life. Over the past few months I'm becoming pretty certain that my life will be like this forever, there will be no recovery with prolonged good or even tolerable periods. It's going to be like it has always been, feeling terrible from severe depression and hyperaroused from constant anxiety for much of the time and then despising myself even more.
  10. jsm1974
    jsm1974 avatar
    58 posts
    3 October 2021
    Nevergoodenough, have you looked into alternatives to ECT such as DBS or TMS? TMS will be covered by medicare as of 1 November and doesn't have the side effects of ECT. I'm submitting an application to the Black Dog Institute to see what my options are, so that might be something for you to do as well.
    2 people found this helpful
  11. Dansher
    Dansher avatar
    1 posts
    16 October 2021 in reply to jsm1974

    Hi jsm1974, I read your post and thought I'd sign up to the forum and reply.

     

    I've had some experience with ECT over the last year, not sure how many sessions, maybe 40 or so?

     

    I've had depression since I was a kid, without ever really knowing why. Recently found it it's probably due to undiagnosed autism and social anxiety, but that's another long discussion haha.

     

    Anyway, I started ECT about this time last year, and I think it did help, it's hard to tell at times as I'm still nowhere near where I'd like to be and I tend to focus on the negatives and catastrophize (spelling?) everything. But when I try and think about things with a level head, I think have come a long way in the last year. My psychiatrist and mother think it has made a big improvement.

     

    That said, I'm not doing it anymore. I think I got to the point where it did as much as it was going to do for me, and now it's the psychological issues I need to deal with in order to get where I want to be.

     

    I did have some side effects, the anesthetic does leave you a bit out of it and some people seem to feel that more than others also you do normally have a headache after. (An ice pack helps alot) From my experience and from talking to my psychiatrist and other patients, the memory issues tend to depend on the placement of the electrodes, the more effective placements tend to also have more of an impact on memory. I found my short term memory became fairly poor and when I was having the more aggressive treatment, I had trouble remembering words, its hard to explain, but you would know that you knew the word for what you were trying to say, but you just couldnt make the connection to actually use it. Like I said, not easy to explain, but it was only temporary.

     

    My memory from back when I was having it 3 times a week is still pretty foggy, but other than that I didnt have any lasting negative effects. Plus I also take medication which can have an impact on memory and cognitive function, so some of that could be a result of that.

    Hope that helps in some way :)

    Dan.

    2 people found this helpful

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