Post-ECT (or, “A Post about ECT”)

Among the things I hate to admit is the fact that I truly believe ECT is helping me.  How can something so uncomfortable and dreaded have such a positive result?

I had ECT yesterday.  I make myself physically ill with the anticipation leading up to it, and I know I have to totally clear my calendar for that day because I will be useless when I get home.  For starters, I can’t eat anything for 12 hours prior to the appointment because otherwise I tend to throw up and it’s not pretty.  Upon arriving for my session, I take a cognitive response test to make sure I’m “with it” enough to go through with the therapy.  I take a shot of oral meds to help increase the level of my seizures, and then another to keep my stomach acids from roiling.  Then I take a pill that falls in the same category as Dramamine to keep me from tossing up the rest of the meds.

After I’m plugged into the IV, I’m rolled on a stretcher into the “electricity room” (my name, not theirs…..) and get hooked up to be zapped.  I am put under general anesthesia every time (47 times now, but who’s counting!).  But none of that is the part that I consider uncomfortable.  It’s how I feel when I wake up.

I’ve not seen myself in a mirror following ECT, but I have a fairly good idea of how I look.  Frazzled, drugged, unable to comprehend.  But I know how I feel, and it’s not pretty.  I feel dizzy and nauseous, and I typically have a terrible headache.  The 7-mile ride home in the car is almost too long, because I feel so nauseous and cannot hold up my head.  Yesterday I actually fell out of the car when I opened the door.  I need assistance getting in and out of the vehicle, and the only reason I brave the stairs to get to my bed is because I don’t want my children to see me post-ECT.  It’s scary and ugly and sad.  So I receive help getting up that staircase and collapse in my bed unconscious for at least another 4-5 hours.  If I don’t sleep through the night, I might get up to find something to eat.  But I typically don’t have much of an appetite and it’s tough to move around once I’m up.  I eat simply because I need the nutrition and hydration; otherwise, I’d stay in bed.

Halfway through the night following ECT, I often wake up feeling like I’ve been hit by a truck, because every muscle in my body aches.  I’ve been told that’s because of the seizures.  And when I wake the following morning, sometimes my head feels a little thick.

But surprisingly, that’s it.  Most often, I wake up and feel great.  I feel positive and alert.  And when I consider what I’d gone through the previous day, I’m always surprised at how great I really do feel.  The nausea and extreme fatigue are gone, the anxiety and darkness leading up to knowing I needed to return to ECT is gone.  I feel really good.  It’s amazing how many things in life start off badly, only to be good for you somewhere farther down the line.  I find myself doing this a lot lately:  trying something hard and distasteful, hoping for a good result.  And ECT is a good example of this.  I hate it.  I truly hate the anticipation and anxiety leading up to it, and all of the nasty discomfort and pain that follows for about a day.  And then I’m good for 5-6 weeks before I am the one to decide it’s time to go back.  The good feeling is addicting.  And I’m willing to go through the bad to get to that feeling.  I’m willing to do that in all aspects of my life.

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17 thoughts on “Post-ECT (or, “A Post about ECT”)

  1. I’m happy to hear things are going fairly well for you. They’ve come a long way with ECT.

    I had a round of ECT a few years back and while it didn’t work so well for me, I don’t regret going through it.

    I pray you continue to maintain relative stability. 🙂

    • I continue to enjoy receiving your comments because you are always so honest and straight-forward. I especially appreciate your prayers – I hope you realize how encouraging it is to read a comment in which someone wishes warm thoughts for me. Much appreciated.

    • Hello, Willow – my intent with this post was not to scare any of you away, but to share (what I can recall, anyway) an intimate account of how I feel going through this treatment. I know of nobody, personally, who has gone through ECT and therefore had no personal information with which to help me make a decision. I hope you found the information helpful. Good luck to you.

  2. Carrie Fisher, of Star Wars fame, is very open about having bipolar disorder. She has gone through ECT therapy and has written her experiences. Might be something to google. For me, it’s always comforting when I find someone going through the same experiences as me.

    • Thank you, Bradley. I actually mentioned Carrie in a previous post (“May the Force be With You”) because I was so impressed by her willingness to come forward and discuss things that typically make Hollywood uncomfortable. However, I have yet to read her newest book. Thank you for reminding me. I agree about the comfort – I find a great deal of it here on this site from people willing to open up to me. Thanks very much for your comment.

  3. I’m glad you have found something that works for you and I admire your strength and ability to see past the initial trauma of each procedure in order to focus on the benefits. I too am comforted and inspired to find others who are fighting the same fight and are coming out on top!

    • Thanks for your lovely comment. I appreciate that you took the time to share your thoughts, and am always glad to know there are other people out there looking for comfort and inspiration, not just me.

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  5. I had 82 ECT treatments and because of the memory issues related not sure how effective it was, I guess it was doing two different time periods. I assume it must have been helpful if I had so many treatments and went through it twice. I have learned through my illness that whatever works usually involves some discomfort: side effects from medication, aches and memory loss from ECT, the draining feeling after therapy appointments, constant blood tests for some medications. It’s just a matter if the positives from the treatment are worth the discomfort. I wish you the best in your continued treatment.

    • 82! I am in awe of you. And clearly, they worked for you because here you are, of sound mind, replying to a blog. I’m so happy to hear from you – thank you for taking the time to post a reply. It is encouraging for me to hear from you, and I completely agree with your assessment that “whatever works involves some discomfort”. I don’t think any of us get anywhere in life without a little pain, and you are right: are the positives from the treatment worth the discomfort. In my case, yes. I’m still here on this earth and that is the biggest positive of all. Thank you for your thoughtful comment.

      • I think a lot of time ECT gets a bad rap because of how it was shown in the past in media; also here in blog land with the few people I have read that had experience with ECT said it was terrible, ineffective, and sometimes they ended up worse than when they began. I think people are more likely to document the bad experiences to warn others. I wish I had written during the time I had ECT so there was some documentation. I do remember running into people who knew me and I had no idea who they were and just tried to fake conversation hoping they would mention something that would cause me to place them somewhere, a common class or something. I think you will appreciate in the future that you have written about your experience.

  6. I had ECT today (round 14). I feel like I’ve been hit by a truck but the world does look slightly brighter. Like you I’m anxious and apprehensive in the lead up to the procedure but it’s proven to be the only thing that gives me my life back. I’d rather have one zap every so often them feel crap every day from drugs that don’t work.

    Thanks for your honesty. It’s not often you come across an open and frank account of such a controversial treatment. This is a loathsome disorder that impacts every aspect of my life. Reading about your experienes makes me feel less alone.

    • Hi, Robyn –

      Im really happy to hear from you. I have now had over 50 ECT treatments, and although I have suffered some memory loss, I know it is slowly coming back and I know that I made the right choice in deciding to begin this new part of my life. And that’s exactly what ECT is: a part of my life. And it’s something that I truly believe has saved my life.

      I also feel like I’ve been hit by a truck for about 24-30 hours following each procedure, but each time I do it, the blackness has faded a bit and I feel like I can actually live my life. I’m proud of you for trying this, and for sticking with it. In no time at all, you’ll be in the “maintenance” phase of the treatment and you will only have to go every few weeks. There is so much stigma attached with ECT and I’m glad to hear from someone else who doesn’t think of it as Dark Ages torture. It’s a real and valuable part of treating disorders like bipolar, and it allows us to be temporarily free of the pain associated with our disease. I know it’s not a cure. But I know it helps. And I’m glad to hear that you know it, too. Please keep me updated on your progress. I do not know a single person who has ever undergone ECT and it’s nice to hear someone else’s opinions and experiences.

      Thanks again, Robyn. Have a great weekend.

  7. Hi Cecily,

    ECT Round 15 today. Another day feeling like I’ve been hit by a truck but things are looking brighter.

    I’ve just discovered my favorite author, Jim Wight, the fellow who wrote the All Creatures Great and Small books as James Herriot underwent a decade of ECT to treat depression in the 1960s. That couldn’t have been pleasant with the rudimentary anti-nausea, anti-convulsive and pain relief treatments available at the time. How lucky are we to live in an age where most of the worst side-effects can be masked to make ECT less traumatic. It worked though and he came through to enjoy the rest of his life. I find it inspiring from this side of the illness.

    I just read your “Much a do about nothing” blog. Amazing. I relate so well to the out of control response. I’m also gluten-free & find the swelling & chemical breakdown in my brain after eating gluten triggers wild, unpredictable mood episodes. Ibuprofen seems to help. My kids suffer so much from my explosive behavior. My father was the same & it terrified us when we were young. I hate the thought that I’m inflicting it on my precious boys. All strength to you for your honesty. It’s much appreciated & clearly related to by many other sufferers.

    I’m also ashamed to admit I relate to your other blog on narcissism & selfishness. I check both those boxes and I’m watching the behavior develop in my 10 year old. My husband & 8 year old are completely devoid of these traits so I’m convinced it’s part of being bipolar. I try to keep it in check in the interests not damaging too many relationships but can only do my best given the poor self-awareness that’s central to this disorder.

    Thanks again for your honesty. I hope everything is going well for you and you had a great weekend. 🙂 Robyn

    • I have read that book! The doctor who administers my ECT actually knows Kitty Dukakis, and he recommended her book to me. What I find most inspiring about it is that she apparently only does maintenance ECT a few times a year. Definitely something to look forward to – I would love to get down to only needing it every few months.

      Happy to hear from you again. Glad to hear you can “relate” to me because even though I’m sad to hear that someone else is going through what I am, it means I’m not alone.

      Keep me posted on your progress!

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