Seizures, Memory Loss and Feelings

Do you feel anything during the process of ECT?

     When I went in for an ECT treatment I had to go in fasting. They would walk me into the ECT room and have me climb onto what looked to me like an EMT transporting cart. I was given general anesthesia and a muscle relaxant. Often time that was hard because I was completely fasting and the anesthesiologist had a very difficult time finding my veins. Sometimes he would have to prick me four and five times to find a vein, often times settling on my foot. I have bad veins anyway, so this wasn't much of a surprise. When he would start the shot of the anesthesia it felt like it was fire entering into my veins. It burned SO MUCH! Now I wonder why I never got used to it because I had it so much. After the shot it was like my body had become filled with lead. It became very, VERY heavy. Next thing I knew I woke up with a very bad headache in the recovery room and they were trying to cram me full with juice and doughnuts. I think the doughnuts were their way of trying to make it up to me. :) I would felt like I had been hit by a train. They'd make me lay in bed for about 45 minutes or so and then either wheel me out in a wheel chair or walk me out with a nurse. I never felt the electricity during the actual procedure, but I've had multiple dreams where everyone in that ECT room are standing over me laughing and I felt what it must have felt like to have electricity pulsing through my body.

How much do you permanently forget after ECT?

     That is a good question. I can only say that I've forgotten probably 99.9999% of the past 20 years or so. All of the emotional attachment to anything that I experienced during that time is completely gone. Anything I know about what I experienced during that time are only what I have gathered from my own journals, photo albums and stories people have told me. I can't remember people's faces, personalities or any of that. Which is strange because I am really a people person and to have forgotten what I love most about life is really strange. It's almost like I've mentally experienced a time warp because nothing registers and because there isn't even a shadow there of what I did experience it's like it never happened. I've forgotten probably 95.99999% of most everything before that. I quit against medical advice in July 1, 2009. So, although is has been more than a year, I cannot say it's been permanent. However, when I had ECT in 2002-2004, my journal records that I still had not begun remembering my previous college experience, relationships or training of any type by the time I began ECT in the fall of 2007.

     For a LONG time I could not picture people's faces or places in my mind's eye. It was like I did not even have a "mind's eye." It has only been since last august that I have been able to see a picture in my mind's eye. And even still I cannot picture someone's face unless I have recently seen them in a picture or in person. Even then it is almost like they are suspended, because I can only see that particular photo of them.

This is difficult because I really have to trust people that they are telling me the truth when they tell me about things I've done or that have happened in the world because I've actually believed what people told me only to find out later that they were just teasing me about something. It's an odd, vulnerable position to be in.

You have to remember the magnitude of ECT treatments I've had. I've had more than 100. I had them in acute treatments meaning the were all either weekly or biweekly.
     Kitty Dukakis also had ECT. It effected her differently. I heard one interview where she said it was the best thing that ever happened to her and that the only thing she'd forgotten at that point in time was a trip to Europe. Which is awesome, for her. I'm kinda mad at her for saying that because it discounts the major memory loss experienced by others. And sets other people and their loved ones up for minimal memory loss.
     My doctor told me that the reason I could not remember my own home phone number eight months after moving into a new home was because I use speed dial. I just stared at him in shock and wondered if I should start using speed dial, especially when trying to give people my new number. Just push a button on my phone, hand it to them, and tell them to call me.

I can see it now:

     Friend: I need your new number.
     Me: Oh, okay, let me see if I can remember how to use speed dial. My doctor told me it would be easy.
(Fidling with buttons on phone) Oh, forget it. (handing them the phone) You figure it out!
or

     Potential employer: Where do you want me to contact you?
     Me: I'm at the grocery store now, please call me at home.
     Potential employer: Great, I notice you didn't include that number in your resume. What is it?
     Me: Actually, I'm not sure. But if you wait for just a minute, I'll find it on my speed dial, call it, and let you know.

or (my favorite):

     Me: CRAP! I'm locked out because my roommate left while I went out to dump the trash! Maybe I'll go next door to use with their phone. Oh . . . who would I call? Can't call home, don't know the number, even though I've lived their for eight whole months! Oh, that's right, Duh, my roomie's not even home anyway. Duh! Can't call my roommate! I spent all my time trying to memorize the one number I REALLY needed, my own, not hers! I guess I'll just sit here on the curb until my roommate comes home after her 12 hour shift! Maybe I could call her at work . . . where does she work again??

     It is common to have more significant memory loss when a consumer has had more than 8-12 treatments. For example, a friend of mine (ECT A) has a graduate degree but cannot work in what they were trained to do because after having ECT they had no memory of their educational process, nor of the YEARS of being a nurse because of the ECT treatments they had.
     I know another ECT survivor (ECT B) who seriously considered divorce and basically abandoned the young children because ECT B has absolutely no memory of even dating the spouse, let alone being pregnant twice and giving birth to the two children.

     Think about it. If you woke up one day in the bed of a stranger and was told that the kid crying in the next room was yours and you needed to go change the diaper, I think anyone in their right mind would freak and leave the situation. But from a "normal" perspective, ECT B's family, friends and other loved ones can't understand her rational. However, let's think about this a little harder . . . all emotions that we, as humans have, are generated by experiences we'd had. Thus, if you can't remember the experiences, you can't attach them to the emotion, resulting in feeling detached from everyone because you can't remember anything in common with them.
     Luckily I've kept a journal and can read about things that have happened to me, but it is like reading books that contain names of people I recognize and yet having no emotional connection to those pages and names.

     I read something in my journal that might illustrate this better. I went to my parents' house to watch a movie. I was so excited because my dad let me pick out the movie. I picked out one called, "Return to Me" and I loved it. When we finished the movie I went upstairs to the kitchen with him and my mom asked what we'd seen. When her told her, she rolled her eyes and said something about seeing it for the fourth week in a row! My dad said that I'd commented through the entire movie that I couldn't believe I'd never seen the movie before because it had to be the best movie ever made! And there you have it. Memory loss.

Is it like having a Seizure?

     Again, that's a good question, but one I can't really answer because I am not sure if I have ever had a seizure either. My friend has grand Mal seizures and she says that when she wakes up she's very sore, has forgotten everything that happened immediately before the seizure/during the seizure, has a hard time orienting herself and is exhausted.

     I don't think I woke up too sore from ECT, probably because of the muscle relaxant. Other than that, I can only tell you what I wrote in my journals. Which, is basically nothing when it comes to the actual process and after effects of having ECT.