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Topic: ECT - My experience

26 posts, 0 answered
  1. Juliet
    Juliet avatar
    30 posts
    5 March 2014

    Hi guys,

    I just wanted to come back on the forum and let you know what my experience has been with getting ECT. I know that there were a few people considering the option after talks with their different doctors. Personally I have found ECT to be amazing. It has been nothing but positive for me and I am feeling GREAT!! It took until the ninth treatment to notice a change, and also a change to bilateral ECT, but now that I have, wow, I am very happy with the result. Basically I currently feel 100% better. I don't know if this is going to drop off and I have heard that it can, but I would have no hesitation in undergoing more treatments in the future if so. I am now up to my twelfth treatment. 

    There are some side effects that I need to mention. I have noticed some difficulty with my memory. I try to keep in mind that my memory was pretty bad just with the depression but I have noticed sometimes I am trying to find an answer to something that I am sure I would know and I just can't get to the answer. For example I was asked the question where I have travelled in my lifetime and I found it difficult to know for sure that I was giving the whole answer! I was thinking, "I know I've been to the UK and Bali and Singapore but is there anywhere else major I have been?" and even though I was Reasonably sure, I wasn't Entirely sure that there wasn't. I know this probably sounds pretty bad but it was one of the few times with problems with my memory and honestly I don't care at all... it is very much worth some memory and maybe some concentration problems to be feeling better than what I was. 

    Anyway I just wanted to come on and share my story. I know it is not a small decision to go ahead with ECT and I don't want to pretend it is. If anyone has any questions please feel free to ask.

    xxxxxx TJ

    7 people found this helpful
  2. JessF
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    JessF avatar
    1548 posts
    6 March 2014 in reply to Juliet
    Hello Juliet, I am so glad you have found something that works for you. I am interested to hear more, when you say it took untilt he ninth treatment till you noticed a change, did that put you off at all?  Did you get scared that it wasn't working but you were still having the memory side effects?  Did the doctors explain things well to you and help you through the process?  Sorry about all the questions but I have only ever read things second hand about this and am keen to hear how you kept yourself going through such a big process. it's very inspiring.
  3. Neil_1
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    Neil_1 avatar
    4232 posts
    6 March 2014 in reply to Juliet

    Hi Juliet

    :)  so, doing a smiley DOES take up character space!  :)

    I'm interested in this too.

    Along with what Jess said, but also, were you in hospital for the entire time?  Were they daily treatments?  Were you allowed out of the hospital at all?  Um, and I guess, this might be silly, but, did it hurt?

    Oh and how long did each treatment last for?

    Sorry for the amount of questions, but it was something late last year that my psychiatrist was toying with for me.

    Cheers

    Neil

     

     

  4. Neil_1
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    Neil_1 avatar
    4232 posts
    6 March 2014

    By the way Juliet ... well done and mega kudos to you for posting about your experiences with this.

     

  5. Beetle
    Beetle avatar
    236 posts
    6 March 2014 in reply to Neil_1

    HI

    Wow thanks for posting your experience. I watched it done once....

    Beetle

  6. Juliet
    Juliet avatar
    30 posts
    6 March 2014 in reply to JessF

    Hi JessF,

    I had a very nice psychiatrist who has also at times been one of the doctors in the room to administer the ECT. In the room there is a psychiatrist, the anaesthetist and a nurse. I wasn't put off by the fact that it wasn't working up to my ninth treatment I was more just starting to worry a little bit that it might not work for me. My doctor wasn't concerned though and I think it is pretty normal that it might take a while to start working. Pretty much as soon as he changed it from unilateral to bilateral it started to work. I didn't start to have any memory problems until the change to bilateral and even then hardly any and they weren't particularly disturbing to me. 

    Everything was well explained to me by my doctor and since I stayed the first nine treatments in the hospital it was a rather drawn out process so there was plenty of time if I had any questions and always a nurse around to help.

    On the day of the treatment a nurse would come in and wake me up at 5:30am and give me some panadeine forte to take for the headache that would probably come later. Then she would put some numbing cream and tape on the back of my hand ready for the anaesthetic. Usually I would be scheduled for ECT at 6:30 so she would come back and take me upstairs where I would wait in a room with a few chairs and tv until it was time to go in. Once in the room I would lie on my back on the bed while the anaesthetist put in the needle and then they would get me to turn on my side while they put the oxygen mask on and I would go under. The doctors and nurse were always really sweet to me and made me feel comfortable. The next thing I would wake up in the room next door with another nurse who would then take me in a wheelchair back to my room. Now that I am doing outpatient ECT they take me into another room to sit in a recliner and watch tv for a few hours until the anaesthetic has worn off a bit and someone comes to pick me up and take me home.

    Hope that explains a bit. Please let me know any more questions..

    Juliet

    4 people found this helpful
  7. Juliet
    Juliet avatar
    30 posts
    6 March 2014

    Hey guys, 

    I wrote a post but I'm not sure if it is being moderated or whether it has been lost in the ether so just waiting on a response from BB :)

    TJ

  8. Neil_1
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    Neil_1 avatar
    4232 posts
    7 March 2014

    Hi Juliet

    Thank you so much for that response back. 

    So it’s more or less like a little mini operation – they put you under and you don’t really know what’s happening and you wake up and it’s all over. Apart from the memory loss are there any other side effects or things that you notice afterwards?  I’m sorry for asking but as you’ve been so wonderful in being able to share your experience, I just thought I’d ask some other things. 

    What is the difference now by being administered as an outpatient?  In that you no longer need to be hospitalised and you can be at home … is that because you’ve already had a number of treatments and there is no need to monitor you afterwards?

    One last thing, my psych mentioned to me last year that if we were to go ahead and have this procedure, I apparently would have had to go off all my meds that I’m taking and be ‘med free’ for this to be done.  Is that the same as what happened with you?

    Again Juliet, thank you so much for sharing your experience with this.

    Neil

  9. Juliet
    Juliet avatar
    30 posts
    8 March 2014 in reply to Neil_1
    Hi Neil, 

    Apologies its taken so long for my reply. I didn't want to post it until I knew my first one had gone through. 
      
    I stayed at a hospital in Perth called Perth Clinic. Although it was a little 'different' staying in a psychiatric hospital overall it was really a nice place to stay. My own nice room and the food was great! You could do whatever you want there if you want to stay in your room all day thats fine and then they have art classes and relaxation classes and different things you can do as well. 

    My doctor decided when would be a good time to start doing outpatient, probably when I seemed I could handle it (around treatment 9). I'm not really sure if you are allowed out of the hospital at all just because I never really thought about doing it. They would do the ECT every Monday, Wednesday and Friday morning. The treatment definitely didn't hurt, it was really just going in and being put under and then waking up in the next room - like a mini operation as you say. I'm not really sure how long it takes.. but from what I've read about 5-10 minutes? 

    I did go off my meds on entering the hospital. My doctor has since started me back up on some (since the 9th treatment) to ensure that my mood is maintained and isn't able to drop off. 

    Apart from the memory loss there is the usual tiredness that you experience from an anaesthetic so you pretty much need to write that day off and not do anything. I can't think of any other side effects at the moment but I'll let you know if I do. 

    The only real difference in being an outpatient is that I don't need to spend the rest of the time at the hospital. Other than that it is all pretty much the same. I have to remember to fast after 12am for the anaesthetic, wake up and take some panadeine forte at about 5:30am and arrive at the clinic at 6:30am. Being outpatient, after your treatment (at around 6:30) you then hang out in a recliner and watch tv until someone is allowed to pick you up at 10:30am. During that time I usually have breakfast, have my blood pressure taken and have a chat with my psychiatrist. 

    Since changing to bilateral and noticing some memory problems my doctor has been spreading the treatments out a bit more (for that reason). Last week I went in on the Monday and Friday and next week and from now on it will be Thursdays only. This is also because I am feeling totally better now so it is just maintenance treatment from now on. -Not sure how long for yet.

    I feel I need to mention also that even since I wrote my message to JessF I have noticed a bit more memory problems. Sometimes when I'm trying to think back on things I can't remember exactly what took place. For example I didn't remember that my dad had come with me to check out a new shop the other day and when he said he did I said "Did you come there too?", but then when I have time to think about what it is I can always remember after a while. It is as though the ECT blanks your mind a bit but the information is all still there. I know this probably sounds quite scary but I have been finding that forgetting a couple of things here and there doesn't really matter that much! To me, anything is worth feeling this good!!

    I know I probably shouldn't be selling the treatment but I can't help it. I've felt bad for so long I never thought I would feel this way again. Its amazing how happy a regular brain really is. And I'm sure I'm doubly happy just because of where I have come from. 

    Anyway, please let me know if you have any more questions :)

    4 people found this helpful
  10. Juliet
    Juliet avatar
    30 posts
    8 March 2014 in reply to Beetle

    Wow Beetle that must have been an experience.. Probably put you off having it altogether haha!

  11. Neil_1
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    Neil_1 avatar
    4232 posts
    9 March 2014 in reply to Juliet

    Hi Juliet

    Can I just say that I am so grateful and appreciative of you taking the time to relate your own experiences with this.  I've got funny comments to make and serious ones so I don't know quite where to start.  Ok, comedic first:    if this was to happen to me (which I'm thinking more about now) I would be ok with memory side of things because I have kept a daily diary for the past almost 20 years, so I'll be fine with the memory factor.  It's worked out really well, cause my memory is crap anyway, so I don't think I'd notice a great deal of difference.

    Serious:  Juliet, to hear of how you are now and the weight that seems to be lifted from your shoulders and to now be in the mind-set that you are is absolutely wonderful news.  I so enjoyed reading how things are changing for you now and I really hope that you can stay around here for a while as well to respond to others.  It's a brilliant news story and let's face it, we don't hear enough of them.

    Kind regards

    Neil

     

  12. Juliet
    Juliet avatar
    30 posts
    9 March 2014

    Hi guys,

    Just wanted to share some links that I found helpful when I was thinking about ECT. The second one is pretty much exactly the same as what I experienced in Perth also.


    https://www.youtube.com/watch?v=oEZrAGdZ1i8

     

    https://www.youtube.com/watch?v=5Ct90t_iF6Q

    1 person found this helpful
  13. Jo3
    blueVoices member
    • A member of beyondblue's blueVoices community
    Jo3 avatar
    2269 posts
    9 March 2014 in reply to Juliet

    Hi Juliet

    Thanks for sharing this interesting procedure.  I did watch the second youtube and it was interesting.

    But can I ask - and excuse me for being so naive but was is ECT used for?

    Sorry if it's a silly question, I'm just interested.

    Jo

  14. Juliet
    Juliet avatar
    30 posts
    10 March 2014 in reply to Neil_1

    Hi Neil, 

    I know you said it as a (part) joke but I do think your diary would be really helpful! Sounds good haha 

    and thank you for your other comments :) It would be great for me too if I am able to help anyone by answering questions. 

    By the way did you get a chance to look at the links at all? ;)

    Juliet

     


  15. Juliet
    Juliet avatar
    30 posts
    10 March 2014 in reply to Jo3

    Hi Jo,

    No it's not a silly question at all! It's not necessarily known about that's for sure :) Pretty much it's a treatment which can be used for people with depression or other mental illness who haven't responded to medication or any therapies. A psychiatrist is able to stick some small pads onto your forehead and while you are asleep (under anaesthetic), emit an electrical current through the brain which causes the body to have a short seizure. (The body doesn't actually move because you will have been given a muscle relaxant so just the toes will twitch a bit). Somehow this seizure seems to cause changes in a persons brain chemistry and is able to improve their depression. Usually it takes a few treatments to see a change (somewhere from 6-12, in my case 9).

    I hope this helps to explain it a bit. Let me know any more questions.

    Juliet

  16. Jo3
    blueVoices member
    • A member of beyondblue's blueVoices community
    Jo3 avatar
    2269 posts
    10 March 2014 in reply to Juliet

    Hi Juliet

    Thanks for explaining what ECT is used for.

    Wishing you all the best

    Jo

  17. Janel
    Janel avatar
    1 posts
    29 February 2016 in reply to Juliet

    Hi Juliet

     I also want to get ect done at Perth clinic, however I find alot of psychiatrics are cold hearted and just throw meds when I know it requires my brain to be reprogrammed. Which psychiatric did you see for your referral I'm so over getting a referral and being knocked back time and time again. Thanks :)

  18. Nola
    Nola avatar
    1 posts
    30 October 2017 in reply to Juliet

    Hello I just read your review

    Found it positive My mum is undergoing this treatment and it will be her 2nd one

    I found her very much back to her old self but it takes time and more treatment I was a bit scared to think shock waves to the brain arghhh but if it takes a person to be well again then yes

    I don't want her to relapse so scared but I guess keeping up with the medication and regular check ups she'll be fine she's 70 only young love her dearly

  19. H2Ohog
    blueVoices member
    • A member of beyondblue's blueVoices community
    H2Ohog avatar
    9 posts
    1 May 2018 in reply to Neil_1

    Hi all! I'm reading and responding to this as I rest after my 6th ECT treatment this morning. This is my first experience in a mental health facility and with ECT so I'm happy to answer any questions. I have, so far, found the treatment way less scary than anticipated. Results are favourable but I have been advised that the full benefits are still to come. My memory wasn't great to begin with, but I haven't noticed it becoming worse either. The treatments are quick, painless and if anaesthetic doesn't trouble you, then the treatment is a breeze. Feel free to fire questions at me & I'll try to answer. I found it hard to get solid information prior to beginning my treatment plan so I'm happy to help.

    2 people found this helpful
  20. gnomadicmind
    blueVoices member
    • A member of beyondblue's blueVoices community
    gnomadicmind avatar
    22 posts
    27 May 2018

    Hello Juliet

    Thanks for sharing your amazing story. Also thanks to everyone else who has been brave enough to share.

    Ive been on meds for over 20 years. I lost my husband last year due to a long horrendous illness. I think that the grief has been dealt with but I’m at the point now where I can see that I have to get my depression sorted to continue living.

    Meds haven’t helped, I feel such a deep despair when I think of the future. I think ECT is now my only opinion as meds haven’t helped.

    I have had TMS about ten years ago. 20 sessions then maintenance but that didn’t seem to work.

    How do people cope when they go off their meds at the same time as having ECT. Surely going off the meds would make one feel pretty crappy and cloud whether the ECT is working?

    I’d be most grateful for anyone’s advice. :)

  21. Rob64
    Rob64 avatar
    1 posts
    24 June 2018 in reply to H2Ohog

    Hi Neil I’m lying in bed in hospital deciding whether to go from unilateral to bilateral tomorrow. Just read all the posts. I’ve felt a diff up to my last one on Friday where now I’m feeling a bit flat. Friday night after my 8th treatment I had a vivid nightmare which caused an anxiety attack I can still feel the effects of. Memory wise I’m. Its not too bad but a bit worried about going bilateral. Just read all Juliet’s comments from 2014 and her 9th treatment was where she noticed a diff. Also was a bit sick from the anesthetic on the 8th which was a first. I feel like I’ve plateaued in my progress. Any comments would be helpful.

  22. Quirkybeachbum
    Quirkybeachbum avatar
    2 posts
    29 August 2018 in reply to Juliet

    Hi Juliet,

    Thanks for your post, it’s great to hear a positive story as I am seriously considering ECT over rTMS following many years of treatment resistance...

    The literature I’ve read so far indicates, 70% success rates with ECT, rTMS seems the jury is still out on that one.

    It seems, that a lot of people report memory issues with ECT.. On balance I’m not sure my memory would be any worse off, I certainly lack a lot of confidence in my memory.

    Anyway, I’m rambling.

    It is good of you to post a positive story.

    Cheers

    quirky..

  23. Quirkybeachbum
    Quirkybeachbum avatar
    2 posts
    29 August 2018 in reply to H2Ohog

    Hi H20hog,

    just wondering how you are shaping up now, from your treatment in May..

    Im seriously considering ECT and my Psychiatrist is laying the groundwork..

    I truly hope you are well, and that it has been a positive treatment for you.

    cheers Quirky,

    ps. Are there any driving restrictions after ECT?

    1 person found this helpful
  24. NovaG
    NovaG avatar
    1 posts
    5 December 2018 in reply to H2Ohog

    Hi,

    Thank you for your share, it's very nice of you to post your personal experience so more people can get help.

    I'm very curious about the brain function afterwards, as my doctor mentioned it to me. You have mentioned memory loss, but what about the knowledge you knew? Were they impaired? Maybe you could remember the sequence of English kings and queens before, or recite some sonnets in a heartbeat, you know what I mean. Or skills you had, maybe work-related, like coding, or teaching, or something uses brainpower?

    Thank you in advance!

  25. jellydog
    jellydog avatar
    4 posts
    19 October 2019 in reply to Juliet
    my hubby is having his 17th bilatreal ect . they are aiming for 30. Has anyone had 30 etc bilateral for severe depression? would love to hear from you
  26. Lilith16
    Lilith16 avatar
    11 posts
    28 March 2021 in reply to Juliet

    It’s been 7 years since your initial treatments. What would you say now?

    I’ve tried every avenue, including TMS, I keep thinking about ECT but I’m terrified. I’m 47 now with a 5 and a 2 year old. I want to give them the best version of myself and not always ‘be sick’.

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