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. 

POSSIBLE SIDE EFFECTS AND REHABILITATION FOR ECT CONSUMERS

Sarah Price

San Diego State University

ARP 684

Rehabilitation Foundations

December 15, 2010

Since 1937, psychiatrists have used electroconvulsive therapy (ECT) to treat patients with acute, treatment resistant schizophrenia, bipolar disorder, psychosis and depression. Modern electroconvulsive therapy treatment consists of putting consumers to sleep with general anesthesia, injecting a muscle relaxant, applying electrodes to the consumer’s forehead (Unilateral ECT treatments involve one electrode on one side of the forehead. Bilateral ECT involves an electrode placement on both sides of the forehead), and administering electricity to the sleeping consumer (by either brief-pulse stimulation or ultra-brief pulse stimulation) which induces a grand mal seizure. Each consumer has a different seizure threshold, consequently the amount of electricity and duration of time lapsed during ECT treatments can vary. A standard acute course of ECT involves 8-12 treatments depending on patient response. Initially, ECT is administered three times a week, twice a week, once a week and then once every other week depending on a consumer’s response. Some clinicians treat consumers with “reoccurrent illness that has been acutely responsive to ECT” with maintenance ECT (M-ECT) which is a longer course of ECT than the standard 8-12 treatments (Rami, Bernardo, Boget, Ferrer, Portella, Gil-Verona, & Salamero, 2004, p. 466).  

Electroconvulsive therapy is “one of the most controversial and poorly understood psychiatric treatments” (Smith, Volger, Zarrouf, Sheaves & Jesse, 2009, p. 554). While some clinicians and researchers feel ECT treatments effectively treat acute psychiatric illnesses, other clinicians feel otherwise. Some ECT clinicians and consumers feel ECT side effects are minimal compared to depths of their illness prior to treatment (Rayner, Kershaw, Hanna, & Chaplin, 2009, p. 384). However, some consumers argue ECT treatments result in cognitive deficits, retrograde amnesia, anterograde amnesia, autobiographical amnesia and executive functioning difficulties which significantly reduced their quality of life (Smith et al. 2009, p. 558;). Other consumers experience problems with all types of amnesia and cognitive functioning while only receiving short-term, if not minimal, psychiatric symptom relief (Rayner et al. 2009, p. 385). Still other consumers experience significant memory difficulties without psychiatric relief, and at times a worsening, of psychiatric symptoms (Smith et al, 2009, pp. 556-557). How does amnesia, cognitive deficits and executive functioning problems caused by ECT, effect a consumer’s life? Would consumers benefit from rehabilitative measures during and after electroconvulsive therapy to improve quality of life and successfully reintegrate into the community?

            Memory loss is a frequent side effect of ECT. In a review of 35 studies on ECT, 20 of the articles concluded that memory loss is a consequence of electroconvulsive therapy. Persistent anterograde (inability to remember things after ECT treatments), retrograde (inability to remember things prior to ECT treatments) and autobiographical amnesia effected between 29% and 55% of all ECT consumers (Rose, Wykes, Leese, Bindmen, & Fleischemann, 2003, p. 326). However, Rayner, Kershaw, Hanna and Chaplin (2009) discovered nearly half the consumers interviewed had memory problems. Out of 189 people surveyed, 28 consumers described experiencing a “small amount of memory loss”, 14 consumers experienced temporary memory loss, 36 consumers described short-term memory loss, 13 consumers spoke of “long-term” memory loss, and 13 consumers complained of “severe and persistent memory loss” (p. 383).

Measuring a memory deficit is difficult because “routine neuropsychological tests to assess memory do not address the types of memory loss reported by patients” (Rose et al, 2003, p. 326). For example, reports of autobiographical memory deficits are not systematically researched because a standardized way of measuring memory does not exist. In fact, each study used different definitions to measure memory deficits (p.326). One consumer interviewed about her experience with ECT replied, “it is hard to try and find employment again [after ECT] because most everything I learned when I got my graduate degree is gone” (Smith et al, 2009, p.557). Such memory loss, during and after ECT treatments not only renders a consumer unable to return to work at a previous job, but also unable to seek competitive employment because education and experience acquired prior to ECT treatments are lost. Consumers become unemployable because they have little or no employment experience and education to rely on when searching for employment post ECT. Along with employment difficulties, consumers also experience deficits in skills acquired by activities of daily living (i.e. skills involving cooking, geographical location, interpersonal skills and a general understanding of the consumers’ world).  An ECT consumer, named Mary, disclosed in a survey conducted by a third-party, that after 11 treatments she “couldn’t remember what to do . . . [she didn’t] remember how to take a shower . . . [she didn’t] know if [she] just forgot what to do . . . [She] couldn’t put complete thoughts together . . . [She] just wasn’t able to function at all” (Smith, et al, 2009. p. 557). Such deficits can impede consumers in executing basic skills acquired through childhood. Researchers felt studies suggested, “the negative effects on cognition are probably small, but at the same time these could influence the daily functioning significantly” (Tielkes, Comijs, Verwijk, Stek.  2008. p. 794). Tim, a family member of an ECT consumer stated, in a third party survey, that “she’s got a hole in her memory . . . her whole memory loss would be like somebody who suffered a major accident with brain trauma or severe head injury . . . there is nothing there” (Smith, et al, 2009, p. 557). In the same article, another ECT consumer stated, “I’ve lost about 15 years’ worth of memory” (p. 557).

Memory loss of this magnitude also creates problems in personal relationships. Personal relationships can be effected because bonding experiences with others are lost. One woman noted her memory loss was good because she could no longer remember her husband trying to kill her, but bad because she also could no longer remember her mother’s death or the births of her children (p. 557). This can be particularly difficult for consumers because life experiences often define people. “Retrograde amnesia is considered the most serious adverse cognitive effect of ECT. Loss of memories of some events occurring before ECT may be permanent” (p. 555). Researchers discovered each consumer and family member interviewed during their study felt memory loss resulting from ECT was larger than expected. “These losses were especially salient for patients who were not able to remember their children growing up, educational history, family members’ deaths, or special vacations and trips . . . Autobiographical memory deficit is clinically the bigger concern for [consumers] and . . . it was the most alarming effect of ECT” (Smith, et al. 2009, p. 558).

Originally, clinicians administering ECT believed consumers only perceived greater memory loss and cognitive deficits than others who had not undergone ECT, a fact reiterated by an article dealing with the long-term impact of ECT on bipolar consumers. “[Bipolar] patients who received ECT perceived more memory impairment than did [bipolar] patients who had never received ECT” (MacQueen, Parkin, Marriott, Bergin and Hasey 2007. p. 245). However, after completing their study, they concluded bipolar patients who had ECT, “this perceived impairment correlated with measured impairment”. (MacQueen et al, 2007, p. 246).

In researching differences between receiving an acute course of ECT treatment and a properly administered course of maintenance ECT (M-ECT) treatment, clinicians discovered consumers with M-ECT did not experience the same magnitude of memory and cognitive difficulties other consumers experienced when treated with a standard acute course of ECT. In 2004 researchers discovered M-ECT should be administered at least 36.8 days apart to “avoid frequency interference in the cognitive outcome” because the “cumulative effect” creates problems with “cognitive intolerability”, thereby explaining why properly spaced M-ECT treatments did not produce the same memory deficits and cognitive impact as an acute course of ECT (Rami et al, 2004, p. 466). The researchers decided “a greater interval between ECT sessions probably enables the neurobiological bases to recover . . . [creating an] absence of the cumulative effect produced when sessions are given within a short period” (p. 469). However, because ECT is not regulated, the “education of physicians in its prescription and administration is poor . . . Electroconvulsive therapy is not a required subject in US medical schools and, surprisingly, it is not a required skill in psychiatric residency training” (Fink, 2007, p. 332). Although this article argues many possible ECT consumers are overlooked because clinicians are unfamiliar with possible benefits and effectiveness of ECT treatment, it also stands to reason some clinicians administer ECT without sufficient knowledge of current research. For example, clinicians may call long-term ECT treatments “maintenance ECT”, even though the clinician is administering acute ECT on a weekly or bimonthly basis for months at a time, producing a strong cumulative effect and at times severe debilitation. “Cognitive performance was poorer with higher numbers of treatments or advancing age” (Sackeim et al, 2008, p. 6). A greater number of treatments at close intervals compound cognition difficulties and often create greater long-term retrograde amnesia under the guise a consumer is receiving M-ECT.

Recent research concludes ECT machines which produce brief-pulse stimulation have a larger negative impact on ECT consumers than ultra-brief stimulation ECT machines. Brief-pulse ECT treatments “produce a greater cognitive impairment in the postictal period, and these effects were more marked than those of electrode placement” (p. 6). In using brief-pulse stimulation instead of ultra-brief, consumers had “significantly greater impairment in all measures of retrograde amnesia, anterograde memory for affective faces and sentences, omission and commission errors on the cancellation tasks, verbal fluency for categories and naming based on visual confrontation” (p. 6).  Such problems need to be addressed through rehabilitation for those who have electroconvulsive therapy treatments to insure clinicians are doing everything to decrease negative side-effects of ECT.

There is a dichotomy between clinician perspectives. Some clinicians tell ECT consumers and family members that any memory deficits caused by ECT usually dissipates within “a few days or weeks although some patients continue to experience memory problems for several months” (Rose et al, 2003, p.1). Such perspectives are expressed in the Royal College of Psychiatrists’ (RCP) ECT fact sheet, “As far as [the RCP] knows, electroconvulsive therapy does not have long term effects on your memory or intelligence” (as quoted by Rose, Wykes, Leese, Bindman and Fleishmann. 2003. p. 1). Using this reasoning, some clinicians tell consumers not to worry about memory loss because if they have any, it will dissipate within weeks after their full course of ECT treatments. However, the following article demonstrates the opposite perspective of ECT consumers and their families. In it, a consumer described how she had been told by her doctor that ECT memory loss was:

“an old wives’ tale kind of thing . . . it hasn’t been confirmed in the literature . . . it’s not really something to worry about . . . [my doctor] didn’t feel there was any documentation to cause me concern so I decided to have it . . . In reality, there is memory loss and I hate that I have lost it . . . I don’t know if [doctors] are just hiding things or they think that we are just too stupid to know . . . or need to know” (Smith et al, 2009, p. 557).

Unfortunately, this consumer’s experience is one of many documented accounts of consumers and family members who feel they were not correctly informed of the extent of ECT’s side effects. Some people even discuss additional problems with motor skills and personality changes not experienced prior to ECT treatment. These changes which can destroy both the spirit of the consumer and, at times, a consumer’s family (Smith et al, 2009, p. 556).

In 2003, ground-breaking research explained the differences in opinion about ECT. Rose, et al, discovered many articles portraying minimal memory loss and cognitive deficits were conducted by clinicians within weeks after ECT treatment and reflected positive results. However, research conducted by third party or consumer led organizations took place well after ECT treatments and had more negative results. These negative results usually discussed the severity and types of cognitive and memory deficits. Additionally, most clinician led research had “low complexity for responses”, while most third party and consumer led research allowed for more intricate responses. (p. 2). Intricate responses gave consumers the opportunity to evaluate ECT side effects months after completion, allowing a fuller understanding of how ECT effected their life. Consumers tend to realize the extent of their memory loss when placed in a situation requiring a specific skills set. Often, because ECT consumers are unable to return to employment immediately after ECT treatments, they later discover how much ECT effected them upon re-entry to employment and reintegration into their community.

This discrepancy in perspective also raises the question of how comfortable a consumer feels when being interviewed by their doctor and whether or not consumers feel they can be more (or less) honest with people who are not directly in charge or associated with their psychiatric treatment (p. 2).

Some clinicians feel benefits from ECT outweigh the risk of potential problems and side effects of ECT. When explaining to consumers and their families whether or not ECT is a viable and favorable option, clinicians often lean on positive research conducted in clinical settings by clinicians rather than sharing the negative perspective published in third party or consumer led research. The effect can be devastating for some families and consumers who feel that ECT will resolve all problems with the psychiatric illness, instead receiving limited symptom relief and creating ensuing memory and cognition problems.

In my research of more than 20 articles in nursing, geriatric, psychiatric, neurologic, neuropsychiatric and medical journals, I discovered clinicians currently have no rehabilitation procedures or programs in place to assist consumers experiencing cognitive deficits or the different types of amnesia associated with ECT. Nor are there any rehabilitative measures in place to assist consumers or their families with any additional side effects. I found it interesting because patients with traumatic brain injuries are often immediately enrolled in rehabilitation. Side effects of electroconvulsive therapy need to be addressed in rehabilitation programs because should these side effects surface, consumers and their families do not feel abandoned by the clinicians they blindly trusted to administer ECT.

Perhaps there are no rehabilitation measures in place because clinicians regard ECT as therapy, an end to a desired goal of psychiatric symptom relief. Because significant retrograde amnesia, anterograde amnesia and cognitive problems are not manifest in every single ECT consumer, perhaps it is overlooked when in reality at least one third of ECT consumers reported persistent memory loss and amnesia (Rose et al, 2003, p. 1). The International Encyclopedia of Rehabilitation teaches rehabilitation clinicians that people with amnesia require early intervention, including:

compensatory techniques, such as computers, beepers, written notes, diaries or through intensive training programs involving the active participation of the individual, as well as his/her family and friend circle . . . organizational strategies, visual imagery and verbal labeling. In addition, other techniques are also used in rehabilitation, such as implicit tasks, speech, and mnemotechnic methods . . . So far, it has been proven that education techniques of compensatory strategies for memory disorders are effective in individuals with minor traumatic brain injuries. In moderately or severely injured individuals, the most effective interventions are those appealing to external aids, such as reminders in order to facilitate particular knowledge or skill acquisition. The purpose of these external aids is to enhance the individual's functional level rather than the memory function per se.   

The same skills taught in rehabilitation programs for amnesia and TBI consumers regarding memory problems, cognitive deficits and relationship issues constitute an urgent necessity for the creation and implementation of rehabilitation programs specifically designed for ECT consumers in an effort to assist them reintegrate successfully back into daily life (i.e. employment, schooling and even personal and family relationships). Doing so will improve quality of life for all ECT consumers. Not doing so continue to leave ECT consumers and their families to overcome pervasive side effects alone, leading to further frustration and alienation.

References

de Guise, E. (2010). Amnesia. International Encyclopedia of Rehabilitation. Referenced from http://cirrie.buffalo.edu/encyclopedia/article.php?id=22&language=en

Fink, M. (2007). Electroconvulsive therapy: evidence and challenges. The Journal of the American Medical Association, 298(3), 330-332.

MacQueen, G., Parkin, C., Marriott, M., Bégin, & Hasey, G. (2007). The long-term impact of treatment with electroconvulsive therapy on discrete memory systems in patients with bipolar disorder. Journal of Psychiatry Neuroscience, 32(4),241-249.

Rami, L., Bernardo, M., Boget, T., Ferrer, J., Portella, M. J., Gil-Verona, J. A., & Salamero, M. (2004). Cognitive status of psychiatric patients under maintenance electroconvulsive therapy: A one-year longitudinal study. Journal of Neuropsychiatry and Clinical Neuroscience, 16(4), 465-471.

Rayner, L., Kershaw, K., Hanna, D., & Chaplin, R. (2009). The patient perspective of the concent process and side effects of electroconvulsive therapy. Journal of Mental Health, 18(5), 379-388.

Rose, D., Wykes, T., Leese, M., Bindman, J., & Fleischmann, P. (21 June 2003). Patient’s perspectives on electronic convulsive therapy: systematic review. British Medical Journal, 326. Retrieved from http://www.bmj.com/content/326/7403.toc

Sackeim et al, (1 April 2008). Effects of pulse width and electrode placement on the efficacy and cognitive effects of electroconvulsive therapy. Brain Stimul, 1(2), 71-83

Smith, M., Vogler, J., Zarrouf, F., Sheaves, C., & Jesse, J. (2009). Electroconvulsive therapy: The struggles in the decision-making process and the aftermath of treatment. Issues in Mental Health Nursing, 30(9), 554-559. Retrieved from http://web.ebscohost.com.libproxy.sdsu.edu/ehost/pdfviewer/pdfviewer?vid=2&hid=15&sid=73f96558-eede-407e-8e93-422674956130%40sessionmgr13

Tielkes, C. E. M., Comijs, H. C., Verwijk, E., Stek, M. L. (2008) The effects of ECT on cognitive functioning in the elderly: a review. International Journal of Geriatric Psychiatry. 23.  789-795.