ECT (OMG, but certainly not LOL)

ECT. aka, Electro Convulsive Therapy. My lifesaver. Maybe the only reason besides my kids that I’m still here today. Here, and relatively happy. I tried everything else. Dozens of meds – every possible combination – but if there was a nasty side-effect to a pill, I would experience it. Weight gain (why never weight loss?), rashes, hair falling out, insomnia (the worst is the insomnia), restlessness, uncontrollable crying, nausea and tremors. The side effects for the oral meds were awful, so I tried alternative treatments: hypnotherapy, acupuncture, acupressure, massage therapy. Sadly, insurance doesn’t cover those. Even more sadly, none of them helped. I’ll get into my life prior to starting ECT in other posts, but let’s just agree it wasn’t pretty. And I was losing my family. My children were scared of me. My husband was scared for me. And I was miserable. Miserable to be around, miserable in my existence. I had been offered the option of ECT by three psychiatrists and four therapists over the course of three years. I usually emphatically insisted “NO!” before the suggestion was even out of their mouths. It scared the shit out of me. Truthfully, it still does. But ECT is the reason I’m still here. ECT helped me get back on track. It saved my life. I wish I could say it saved my marriage, but that’s for another entry, as well. I could describe what it’s like to experience ECT, from start to finish. Is that something people want to hear about? Prior to my first treatment, I went online hoping to read someone’s description of the process, thinking it might settle my nerves a little. What I was able to find was scarier than I thought necessary to share with prospective patients. I was hoping for a less graphic description. Let me know if you’d like to hear about my experience. I’m happy to tone it down a bit. I’m not looking to frighten anyone, although to claim the procedure is not in many ways scary would be a lie. But if you’d like to know what to expect from someone who has now been voluntarily electrocuted nearly 40 times, drop me a line and I’ll share my experience with you.

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8 thoughts on “ECT (OMG, but certainly not LOL)

    • I posted a pretty long blurb about my ECT experience the other day – did you see it? I hope it’s helpful. If you have any other questions regarding ECT you’d like me to try to answer, send them my way. I’d love to help where I can.

  1. hello firstly you are brave thank you for sharing.. i have some questions about ECT if you dont mind me asking.. i have treatment resistant major depression.. ive been like this 2 and a half years constantly suicidal, i dont function as a human being and i dont sleep. been on a range of drugs and now considering ECT.. Their main concern is my age and memory.. how is your long term memory? and personal memories? from what i know it tends to be more short term memory issues.. im not so botherd really id do anything to be well.. x

    • I am so glad to hear that you have questions. When I had them, there was nobody around to ask for answers but my doctors. For starters, I have not had any long-term memory issues. Everything I’ve suffered from has been short-term and although it is incredibly frustrating, everything I read and everything I hear assures me my short-term memory will return to me in time. How much time? That is the questions. It’s been 20 months since I started ECT, and I did so only under incredible duress from my family. I felt forced into it because I’d tried everything else but ECT and thought it might be my last shot at happiness. I cannot speak for your brain – I don’t know if it will work for you or not, but for me it has been incredibly effective. Does it still scare me? Yes. Do I still notice short-term memory loss? Yes. But does it CONTINUE to work for me? YES YES YES!!!!!

      Yes, I have lost personal memories. I went to Hawaii with my family the spring before I started ECT, and I remember nothing about the trip. I forget that I’ve met people and when I (re)meet them again, it’s embarrassing. I forget how to get to my son’s ballfield over and over. But I look at a lot of pictures of my family and friends and vacations and try to remember from the photographs. I think it helps a little. I’m in my early 40s and when I go to ECT, I see patients of all age ranges (well, maybe not younger than about 16 or 18). And I see some of the same people over and over and over again, which means it’s working for them, too.

      There is a book called “Shocked” that talks about the history of ECT, interspersed with recollections from Kitty Dukakis regarding her experiences with ECT. The book is VERY graphic and truthful, but some people need to see it laid out for them like that before they take the leap. I simply leapt. And it worked.

      But I have to advise you to ask a lot of questions and read a lot so that you don’t feel like you’re entering something like this uninformed. I was desperate, and I was losing my family, so I took a chance. That chance worked for me, and I want to believe it would work for you, too. But you need to form your own decision. And I would be more than happy to help. You are welcome to email me with any questions you might have (crazyaboutbipolar@gmail.com). I will be more than willing to assist in any way that I can.

      I’ve written a couple of other posts about ECT (“Goddesses of Comfort and Care” and “Post ECT”). Maybe reading those would be helpful? Maybe emailing me would be helpful? Maybe checking with a few doctors to see if the all recommend it? I’m lucky enough to live in a town where ECT is offered, so I can do it on an out-patient basis and go home to sleep when it’s over. You’ve seen my explanations – it’s not a peaceful process to begin with. But the healing I feel following ECT is worth the headache and pain.

      Please feel free to contact me again if you have any questions. I’d love to know I’m not the only one.

      • wow thank you for your informative compassionate reply! im trying to talk to my friends but they just dont get how big a deal ECT is or when its your only hope because it impossible for you to take anymore meds.. they dont understand that what if it doesnt work etc…

        i will email you and maybe explain a bit more about my situation if thats ok, this is certainly not an easy decision and i cant imagine it being so for anyone how find themselves concidering it.

        im so very glad it has helped you and you are sharing, you will be helping many people i am sure!

  2. I am currently doing ECT – 11 under my belt & planning to go for 12 then stop for now. I understand maintenence treatments are advised.

    I have experienced some pretty awful side effects but the most disturbing is this fleeting dream like, flashback type experience. It is very difficult to describe but it is not a good experience. I am curious to know if anyone else doing ECT has experienced anything like this? I’ve told my psychiatrist & anesthesiologist but they don’t have an explanation. My psych says it will stop once I stop txs. I sure hope so.

    I hope 12 txs is enough – the dr thinks so. I will defineately be glad to be done for awhile.

    Thanks for listening & any input will be appreciated.

    Em

    • Hi, Em –
      I have been “ECT-free” for 15 months now, after completing 48 treatments. I had those treatments over the course of about 22 months. The doctor recommended a schedule of three times a week for the first few weeks, then twice a week, then once a week, once a month, and so on until I tapered off to about once every three months. My body knew when it was time to stop. I never went in thinking, “this is my last time”. I didn’t really keep track. And as the treatments occurred farther and farther apart, I had the sense that I could quit any time, but my anxiety and anger would return and I knew I wasn’t quite ready to stop.

      And then, one day, I decided not to make another appointment. I knew that I had completed my “maintenance” on my own terms. And I felt pretty good about it. My “Beck scores” had been consistently good for months (that’s the depression index they scored me on at my hospital), and I actually felt good. All over good. And I haven’t been back since.

      The flashback experiences? Yeah, I had something similar to that. My memory loss was pronounced. Definitely the worse side effect of the whole process. But my “flashbacks” came when I would look at a picture that I didn’t remember taking, part of my memory loss, and then maybe a day or two later the memory of when that photo was taking would come flooding back. The same with conversations. A friend would say, “Remember when we talked about that lady at work?” And of course I couldn’t remember. But a day or two later I’d be driving and suddenly that memory would crash back into my head. It did take me over a year for memories to return that had been pushed to the back of my mind during ECT, but they are definitely coming back. Slowly, but I know they’re in there someplace. I also had a lot of “deja vu”, that feeling that I’d done what I was doing before. That was weird, but did eventually go away. The most disturbing feeling I ever experienced was just as I was “going under” with anesthesia. Just as they put the mask over my mouth, the doctor would always say, “You’re on your way…..” and within seconds I could kind of see behind my eyes, and with my eyes closed it was as if I was seeing what was happening inside my brain. I “saw” this black thick inky darkness fill in at my ears and start to meet in the middle of my head. I could still hear the doctors while this was happening, and I tried to talk during this time, but by the time the blackness joined in the middle of my brain inside my head, I could no longer hear or speak, and the next thing I remembered was waking up in recovery. I know, obviously, there was no ink in my brain. But that was the vision I got, the sensation that the medicine was flooding my head. That’s the weirdest part of my experience.

      If your doctor recommends 12 treatments, you should listen to him. But Em, if you still don’t feel good after the designated 12, please don’t be afraid to keep going. Only you will know when you are ready to stop, or take a break. I’ve heard that lots of people do a set number of treatments, and never have to return to ECT for the rest of their lives. I’ve also heard of people who go once or twice a year as part of a maintenance plan, and that’s enough for them. Personally, I needed 48 visits before I was ready to stop. I’d like to believe I’m done for good because I feel like I’m happy and thriving. But once again, my brain will probably let me know, loudly, if I need to return. And if it gets to that, I’ll definitely go back for more treatment because it worked so well for me.

      I sincerely hope you’re one of those people who can stop after 12 treatments and continue with your life happy and healthy. You probably know your triggers, and you probably have a keen sense of your own mental health, so pay attention to those and listen to your brain. You will know better than any doctor what works for you, and how often. Good luck, Em. I’m glad you messaged me.

      C

      • Thank you, C.

        Yes – I agree that my brain will let me know if I need to have more ECT txs. But honestly I am terrified ro have anymore.

        During my 1st tx I woke up before the powerful muscle relaxants had worn off. I heard the nurse commanding me to take a deep breath, to breathe & I could not. I couldn’t breathe, move, cry for help, open my eyes. I was absolutely terrified then they put me back to sleep. Thankfully.

        My subsequent txs went ok yet I was so frightened, truly terrified each time I went.

        My depression is gone. My desire to live is absolute. ECT mission accomplished!

        Unfortuneately I feel I’ve traded my life threatening depression for this haunting, fleeting, scary experience that I cannot identify. Consequently my anxiety is running pretty high. This does not equal my debilitating depression & desire to die. Thank goodness but it is scary & I don’t know what to do. I guess believe that it will eventual stop as my psychiatrist said it would.

        When I mentioned this to one of my nurses she made a passing comment about how they do see PTSD at times. I don’t know.

        I agree that the anesthesia was the worst part. All the way around.

        Maybe this is a memory that is yet to reveal itself – I just don’t know. I wish it didn’t feel so creepy, ominous, scary.

        Anyway – I am curious to know if others have ever experienced anything like this.

        Thanks for your response & sharing your thoughts & story.

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