ECT is "like abortion" & Angela's 2nd treatment...

Yesterday morning at 11:55 a.m., I spoke to Angela briefly several hours after she had her second ECT treatment at the University Health Network – Toronto General site. She sounded sleepy, so tired, we agreed to connect later.

I called at about 9:30 p.m. and there was no answer. I sent her an email and at 6:51 a.m. this morning, she wrote:

"I spent most of the day and evening sleeping. Sorry I missed your call. All is well. I was tired yesterday. Had a tiny bit of confusion after the treatment but it cleared up quite quickly. I'm awake at the moment but will likely have a nap..."

At 8:30 a.m. Angela called to give me a more detailed report.

First, I asked her about her muscles and the aching she felt after her first ECT treatment on Monday. 

"It's all gone and this time, it wasn't a problem. I had a little headache, but I took two regular Tylenols and they took it away," she said.

"NO SIDE EFFECTS AT ALL" 

I asked her about her "tiny bit of confusion."

She said, "It was really mild. It was like, I knew what I wanted to say but I couldn't find the words. It was like, if I got up to go the kitchen to get something, when I got there I couldn't remember what I wanted. But then, I'd think about it and I'd remember. It lasted for about two hours, but it wasn't at all debilitating. It was very transient and extremely mild and it went away."

Her ECT treatment experience yesterday mirrored her Monday treatment, "except I was first and I had a different anesthesiologist. I liked the first one better," she said. "The first one explained everything he was doing and this one didn't talk to me. And yesterday, there were students there. Nursing students. But it's a teaching hospital. I don't mind."

I wanted to be sure about the side effects, so I said, "So this time, would you say that two hours after your second ECT treatment, you had no side-effects?"

Angela said, "That's right. No side effects at all."

Again, she said she came out of the anesthetic quickly and easily and was back home at about 9:30 a.m.

Since starting her ECT treatments on Monday, Angela also reported that she hasn't had any suicidal thoughts. 

"There's a difference," she said. "I'm still emotional about things, certain things still upset me, but they're not as upsetting. The 'upset' isn't as prominent. But it could be a placebo effect."

I asked her about her appetite.

"It's extremely poor, but that's been 'my normal' for several months. Me and appetite is a funny thing," she added. "I was anorexic when I was younger. Now, I tend to forget about eating. I think it's because of the medication. It has a lot of anorexic properties."

I suggested she might monitor that a bit and we signed off. She sounded positive and during our conversation she giggled more than I had remembered in recent months. Monday, she'll have her third ECT treatment and this weekend, she's going away with her man.

"ECT IS LIKE ABORTION – IT'S A RED-FLAG"

Meanwhile, your silence is deafening. There have been no comments here for close to a week. Only a couple on my Networked blog on Facebook, questioning my sanity in pursuing this coverage.

You're probably wondering why I'm spending so much time on ECT, a hot-button issue in the world of mental health that fires up emotions of anger, fear and irrationality. 

Dr. Bob and I have often discussed electroconvulsive therapy. He compares it to abortion because it's so hotly-debated and emotionally-driven. "It's a red flag. I don't think it will ever come to any resolution," he has often said.

We've talked about it because of my own relatively benign experience with it more than 40 years ago and more recently because of the rabid reaction I received the last time I posted about it. I was raked over the coals in several personal email messages from David W. Oaks of MindFreedom International which is leading a zealous campaign against "forced" or "involuntary" ECT treatments, apparently administered in the U.S. and other countries.

Over the weekend, I received this message on my Facebook account from a leading U.S. mental health advocate:

Darby Penney wrote, "Sandy, you say you 'know a lot' about ECT, but it doesn't sound like you advised your friend about the very real risks of permanent memory loss and brain damage from ECT. Or the fact that recent peer-reviewed research found that there's no basis to psychiatry's oft-repeated opinion that ECT is effective in preventing suicide. I'll bet her psychiatrists didn't tell her about these things either..."

(I value peer-reviewed research, but I also value scientific studies like the multi-site neuropsychological study that Angela is involved in. The principal investigator is psychologist and senior scientist Brian Levine of Toronto's Rotman Research Institute at Baycrest that is investigating memory loss at a cellular level will be completed in about one year. I'll keep you posted.)

As for the issue of "forced" ECT, it's a huge hornet's nest and I'm not going into it right now (but I will), except to say that MindFreedom International is essentially an anti-psychiatry, consumer-survivor and psychiatric-survivor-driven organization.

To clarify... you know that I am not anti-psychiatry. Nor do I identify with any political anti-psychiatry movement, or any movement. I'm not anti-anything. I am pro-Recovery. I am pro-open mindedness. I'm interested in learning as much as I can about everything related to mental health and wellness. I value individual experiences as well as academic research. I listen to everyone.

I detest labels of any kind. If you're going to label me anything, label me "human."

I am interested in history. I am interested in truths. I accept that there is no absolute truth, except that one. There are many truths. We all have our own truths. That said, in this series, I am simply following the experiences of a 36-year-old Toronto-born woman suffering with severe drug-resistant depression and suicidal ideation through a course of electroconvulsive therapy – which she decided to have one her own without any prompting or even suggestion from her psychiatrist.

Let's see what happens.

THE ANTI-PSYCHIATRY MOVEMENT ATTACKS

Historically, the anti-psychiatry movement has been attacking ECT for hundreds of years and it includes "writers, former patients (not all of whom have fully recovered), physicians, legislators and several prominent anti-psychiatry psychiatrists, most notably Thomas Szasz and R. D. Laing," according to Zigmond M. Lebensohn, MD., Chief-Emeritus, Department of Psychiatry, Sibley Memorial Hospital, Washington, in his article "The History of Electroconvulsive Therapy in the United States and Its Place in American Psychiatry: A Personal Memoir," from the May/June 1999 (Vol. 40, No. 3) issue of Comprehensive Psychiatry.

Tufts University clinical psychiatrist Ron Pies, MD (who kindly and generously takes the time to answer any question I ask him) adds this: "The general mistrust of institutional psychiatry in the U.S. (and elsewhere) is often fostered (ironically) by some in the mental health field, including several well-known psychiatrists who have written influential (if misguided) books. 

"Unfortunately, the association of institutional psychiatry with involuntary commitment raises fears about psychiatric treatments in general, including but not limited to ECT. (By the way, most people in the U.S. are not aware that it is a judge, not a psychiatrist or other physician, that "commits" a patient to long-term, involuntary hospitalization, which varies from state to state in the U.S.)."

Today, from what Angela is reporting, ECT bears no resemblance to the way it is often portrayed sensationally by Hollywood – cruelly, as a form of social control. These images have polluted our perceptions of this treatment used primarily in cases where patients have intractable depression and in some cases (like Angela's) may be dangerous to themselves because of their suicidal thoughts. 

In "earlier ECT procedures – 'bilateral' involving both sides of the brain – significant memory problems were more common," reports Pies. "With the newest ECT techniques most studies using neuropsychological testing have shown no significant residual memory problems six months after ECT. But, there are isolated cases in which substantial memory problems may be reported for unclear reasons. These are often the cases that get written up or circulated on the Internet anti-psychiatry websites." (See the Ray Sandford case.)

"Much less publicized are reports of the many thousands of highly successful cases of ECT use, without any substantial or pervasive memory impairment, using the most modern ECT techniques."

And doesn't this make sense, when you think about it?

After all, how many of us are running around trumpeting to the world our psychiatric histories and all the therapeutic tools of all kinds that have helped us to live meaningful, productive and successful lives.

If only more people did...

 

Comments

[Adinah]

I'm ambivalent on this issue... I know many, many people who were subjected to involuntary ECT in the 40s, 50s, 60s, 70s, who were very damaged by it, who hated it, and who are very much against it. But I know a few people today who tried it when nothing else worked, and absolutely love it. I don't think I would support banning it, but I DO want its safety and efficacy studied in a controlled trial - which has never been done.

I don't think MindFreedom is anti-psychiatry, as you say it is. Many of the members use psychiatry.

[Sally Odekirk]

I'm interested! I've been following these articles closely, because my husband has been wondering about them. Please keep up the good work with this series. And here's hoping these treatments work well for Angela.

[Sandy Naiman]

Hi Sally,

Hey, do you know we have a good friend in common? Susan, who writes...

http://ifyouregoingthoughhellkeepgoing.blogspot.com/

We were talking about you, today on the phone. Your ears were probably ringing. :)

Anyway, thanks for your interest and your support in this series. It's not a popular subject and it's so reassuring to see comments again. I was beginning to feel a little isolated.

I am hoping your husband gets the help he needs. And I have my fingers crossed for Angela, too. She's just beginning, but she's in a good place and she's very open to this course of treatment and, if necessary, to maintenance treatments when she's finished, if she relapses or feels she needs them. We'll see how it goes.

All my best and speak soon!

sln

[Sandy Naiman]

Hi Adinah,

Thank you for writing. I understand your ambivalence about ECT. For years, I felt the same way. It's taken me a long time and a lot of therapy to come to terms with some of the treatments I've had, especially the Lithium that wasn't properly monitored by my psychiatrist for 16 years and eventually destroyed my only kidney.

I think a lot of this ambivalence is caused because we're all different and psychiatrists are human and make the best the decisions they can – at the time. I doubt they want to hurt us. It's just that times change and treatments change with the times. And timing is everything.

I'm sorry you know so many people who had "involuntary" ECT in the past. That's a really difficult subject and I'm trying to understand how it works. I will be posting about it in this series.

At the same time, I know that the safety of ECT is improving. What I don't know is if all people who administer it are keeping up with the latest methodologies and technology. I don't know how well the practice of ECT is monitored. The same can be said for other types of medical technologies, like mammography or even radiation.

Look at this story about it in this week's New York Times:

http://www.nytimes.com/2010/01/27/us/27radiation.html

When you think about it, in matters of health and well being, mental and physical, there are no guarantees because everybody is unique.

And more and more information is surfacing all the time.

I really appreciate your comment.

Take care.
sln

[Sidney]

Thank you for writing this series. I am curious about how modern medicine has been able to make a seemingly inhumane treatment more humane. We have an elderly neighbour (90 years old) who has had a number of ECT treatments in the past couple of years. She reports that it helps her.

As someone who has experienced severe depression and who does not respond well to medication, I am curious about other options should I ever again find myself seriously depressed.

[Carrie Lawson]

There are risks to all procedures and treatments and I know for a fact that University Health Network has an informed consent policy. Every time you take a new medication, eat a new food, walk across the street you could be taking your life in your hands. We make informed decisions all the time to better our lives. One of your 'experts' states that there is a "very real risks of permanent memory loss and brain damage from ECT". I would say tha the memory loss and brain damage from dying of suicide is a little more serious. We have to make choices and some of them are not great but they are better than the alternative. We do not have to inflict care on people, we can provide care, and give people who are capable of making safe decisions the opportunity to better their lives. And if the memory loss and brain damage from ECT is so bad how can these damaged people possibly express this? Who is speaking for them and what are they compairing it too? I have known people to have ECT and if I needed it I would do it. The memory loss experienced from depression and from the treatment of meds etc is an issue I am willing to deal with if I have a better quality of life.

[Melanie Gratton]

I know there have been times when my depression was so deep that I considered ECT. If it can help - great. I wish Angela well.

[Terry]

Thanks so much for your wonderful blog, it's one of the best on mental health on the internet. I've been following it over the past several months.

I think it's great that you have been following the experience of Angela with ECT. In 2005, after almost a 3 years of treatment resistant depression, I chose ECT as a treatment. I was no longer able to work and spent day in and day out with suicidal ideation.

After 8 bilateral ECT treatments, depression was completely gone! I got to see what life was like with-out depression for the first time in years.

A couple of months later, I had 6 more bilaterals with the same excellent result.

Shortly afterward, of all the many medications tried, one old medication not tried before worked and since then, depression has been well managed.

Since then, I am back at work and in 2007, I married my partner of seven years.

While depression is currently well managed with medication, if I ever found myself in the same space, I would not hesitate to look towards ECT again.

The risks are small, but the benefits huge. ECT helped me get back on the road of getting my life back.

[susan]

Dear Sandy,

While I am glad for Angela, had ECT for the same reason- constant suicidal ideation. And as you know, but your readers don't, it was a disaster. I had the same side effects as Linda Andre so elegantly put in her book- at least 20 points loss of IQ, huge memory loss which cost me a career, the suicidal ideation did not go away. not to mention the muscle pains, the head aches, and an infection from the PIC line they had to put in to make the IV easier. For several years after it was akin to a stroke victim- I couldn't read, write, hold a pen, make a list, hold a conversation- do more than one thing, multitasking was out of the question.

I wrote a piece on this several years ago- ironically the piece that started me writing and blogging- where I made a comment about Hemingway getting ECT- where he made a comment about ECT destroying his life and was responsible for his suicide- "a fine cure but it lost the patient"....

On this one well, I am 180 degrees opposite of you, but all I ask, when I talk about ECT, is to make an informed choice. Know the pros and cons. Do read Linda's book. There are a lot of positive stories, and a lot of negative ones, and I thank you for not flaming me and letting me speak about my negative experience .I just don't want anyone to have a bad experience like I did- and have their life ruined like I did and others have. Thanks Sandy.

[Carolyn Mann]

http://ecttoday.blogspot.com/

I am a Nurse Coordinator of an ECT program. I have the opportunity to see people get better with ECT every day. Sometimes the results are nothing short of miraculous and are definitely life saving in many cases.

Thank you for the accurate information about ECT. The bias and the stigma not only keep people from asking their health care professionals about ECT, but also hold professionals back from recommending ECT, even when they know it helps most of the time.

I am glad to answer questions about ECT accurately based on my knowelege and experience. Anyone who would like to contact me through my blog is welcome. http://ecttoday.blogspot.com/

I will be following! Thanks again!

[Gardener]

Hi, Sandi,

Like many, I too have been following this series about Angela's courage. I began reading about her first treatment with knots in my stomach, but by the end of your entry the knots were gone. We are all too familiar with the Hollywood version of what ECT treatment used to be. I'm glad to see that it has moved beyond the barbaric age that it began in.
There was an article in the Star a few years ago about another new treatment, however I haven't heard of anything since then. It, again, was experimental and it was the insertion of a pacemaker type of unit in the brain. At least that is what I had gathered from the article and it was working for the woman who tried it.
I am glad to hear that the ECT is working for Angela, that is very good news indeed.

[Ginger]

Peer-reviewed is a process of review in SCIENCE...I don't think you understood that and thought that peer was meant mental health peers. There is science that says this is bad.

Harold Sackeim king of ECT reversed his position and now says the risk of having significant impairment is much greater...

http://www.ect.org/harold-sackeim-reverses-position-in-upcoming-study/

http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=has1&DepAffil=Psychiatry

I had a friend who had ECT a few years ago...his brains were horribly scrambled during the process. I went out with him a few times and he could not remember what I said 2 minutes later...no joke...it was like radical amnesia...him asking the same questions over and over again for the whole entire time we were together. It was horrifying and I was very frightened for him

Now he thinks he has early Alzheimer's and refuses to consider it might be the ECT.

the strange thing is that even when I tell him what he was like during the treatment he doesn't remember and doesn't seem to really believe me...again...FRIGHTENING.

[Ginger]

oh, final statement on my friend...he simply feels it did NOTHING...no improvement for his depression in his opinion....

[Sandy Naiman]

Hello...

I am touched by the "traffic" this series on my friend Angela and her ECT treatment is generating ~ the kudos and the cautionary notes from those of you who are skeptical, frightened or, like my friend Susan, live with perennial neurological consequences as a result of ECT.

I wish I could understand why this happens when it appears from the research I have done thus far, that the majority of people who have had ECT appear to be helped by it. Immeasurably.

My heart goes out to those of you who have suffered, as Susan has, because of ECT. Not that this will alleviate your anger, but I feel I can empathize. I suffered through dialysis and now live with the constant care demanded by transplant because of my iatrogenic endstage kidney failure ~ after 16 years, lithium destroyed my only kidney as it was not monitored properly by my psychiatrist at the time. I can't compare your pain and mine. Everything is relative.

Still, I know that millions of people with mood disorders are helped immeasurably by Lithium Carbonate. As with ECT, in many cases, their lives are turned around miraculously by taking this drug. They are informed of its risks. Any prescription drug has its risks and side effects.

With informed consent, prospective ECT patients surely are told of the risks involved, too.

As Carrie Lawson rightly wrote in her comment, there are risks in almost everything we do in life. With ECT, you make the decision. That's informed consent. (I don't yet understand "involuntary" or "forced" ECT, but I'm working on educating myself.)

I do know that many years ago, I chose to let my anger at my then-psychiatrist and his negligence, go. He wasn't purposely negligent. He made a mistake. My anger was hurting me as much or more than my kidney disease.

And, I would never suggest that people not take Lithium because it was so toxic for me. We're all different.

All I do suggest is that we keep ourselves informed, which why I am currently reading the Shorter-Healey book on ECT and I'm awaiting the arrival the Linda Andre book. Both tell different, opposing stories about ECT. And curiously, Shorter and Healey acknowledge Linda Andre in their book.

Angela's journey with ECT has just begun. It seems promising. Time will tell.

Again, thank you all for sharing your stories and your concerns, for your honesty and your candour.

We're all coming from the same place, I think.

We all want therapies for mental health issues to help everyone. The challenge is that each of us has a different illness. Our illnesses may have the same name, but because we are all special, unique and different – biologically, emotionally, psychologically, genetically, culturally, racially, ethnically, geographically, in so many ways - there simply is no such thing as a one-treatment/therapy-fits-all.

Everyone has a story. What I'm trying to do is to represent here, in this community, balance. And you hold that balance in your hands by contributing so generously to this ongoing dialogue.

Thank you, all. I am so grateful.

Speak soon!

[Josh]

I can see the involuntary people being very angry about it and what not. Being the 40s,50s,60s,70s things were different then.

Today though things are being better thought out and researched. I think that if one has no other options then trying something cannot hurt a person if there willing to sacrifice themselves for a better good and to assist themselves. Sure there will be trade offs for such a treatment, but some people understand that already when nothing else is working for them and they just want to be well.

I'm glad that the first treatment went well for her though and that progress is being shown already. Hopefully it continues to go well.

[Erykah]

there is a reason for the anti movement. there are better ways to heal than pharmacueticals and ECT. the patient says she felt confused and tired. this was after 2 treatments. how will she feel after 10? people need love, support and sometimes proper meds. ECT is not like abortion. it is shocking the brain. it's wrong. my god it is so wrong. i have yet to meet a psychiatrist who actually cared, showed real emotion, didnt label and medicate. i find it disgusting that OHIP covers psychiatrist but not therapists. if people got the therapy i would bet more than half would never have to use a pyshciatrist. if the emotional traumas were healed, many personality disorders would never emerge.

[Sandra Findlay]

My elderly mother has been helped by ECT. She has struggled with drug resistant, suicidal depressive episodes for the last 20 or so years of her life. ECT has brought my mother back to me in a way that no drug therapy has ever been able. Yes, she has had some minor memory loss. When reminded, some of those memories come back to her. When suffering during a depressive episode her real personality is very much altered. The ECT has been able to bring her normal personality back to her so that she is able to enjoy life.

[Sandy Naiman]

The following comment was sent to my email address because the writer was having technical problems posting it. Here is what Ellen writes:

"This is a very interesting conversation. A friend and I both had inpatient ECT last year and we both suffered greatly from memory loss. Neither of us has had a lasting benefit - I had almost no benefit at all and discontinued the treatment early due to the side effects.

The question of 'informed consent' here, is, I think, key. When ECT was recommended for me (for chronic suicidality and self-harm), I was shown an elderly video about it which was supposed to help me weigh the pros and cons. It mentioned the possibility that ECT 'might' make it difficult to lay down new memories from the time a patient starts ECT to up to 6 weeks after ending treatment. Both my doctor and the video stated unequivocally that my memories prior to treatment would be unaffected, but in fact I had extensive loss of those memories. This was not evident when I started treatment, but became more and more problematic as it continued. I have since heard other senior psychiatrists at the same hospital state frankly that ECT is in fact known to damage pre-existing memories. It also took much longer than was suggested for me to be able to consistently lay down new memories - months following treatment, in fact.

While weighing the decision whether to agree to the treatment, my psychiatrist told me that I would be discharged as 'treatment-resistant' if I did not agree to ECT. This, plus the fact that the risks of ECT were seriously understated, says to me that I was not really given an opportunity to provide informed consent.

Other psychiatrists I have spoken to have differed on the question of whether, if your mood drops following treatment, it means the treatment 'didn't work,' or the patient 'relapsed.' If your mood stays positive as long as you have one or two treatments a week, but drops as soon as you stop, is that considered an effective treatment, or not? Don't forget to take into consideration the muscle aches, confusion, and memory loss which balance out the positive effects of mood gain. (It's recommended that patients not leave home alone on a treatment day, and for good reason.) As ECT is done under general anaesthetic, you are also exposed to the risks associated with that.

Having said all this, I don't regret that I tried ECT, though that may sound strange. If I'd turned it down, I would always have wondered if it would have worked. I did not have hope in living. I still don't, but that's one thing ECT did not actually make worse."

[Doyen]

Back in 1992 I did 11 treatments of bi-lateral ECT. While it didn't lift my depression, it did 'lift' some of the load of 'suicidal thoughts' that I had been wrestling with. So while not a complete success, it wasn't a failure either.

I can understand that some people question the worth and/or risk of ECT. However, the fact remains that a person who goes in for ECT has nothing left to lose. To suggest that a severe depression could be 'fixed' by therapy is an insult. It's like telling a person with a broken leg to take a couple Tylenols. Sure therapy may have its place as an additional treatment, but it should never be considered an alternative. If a person is considering ECT then ideally they should have explored everything - therapy included. (As did I, both personal and group therapy, which didn't help me in the least.)

What's amazing is that there is still so much ignorance surrounding ECT. Perhaps people don't understand how serious depression really is. Perhaps they don't understand how mind-numbingly draining it can be. Perhaps they think depressed people need to 'snap out of it' and 'think positive'.

I wish it was that simple.

I really do.

In any case, like most who have had ECT, I had the short-term memory loss, but nothing long term, and nothing debilitating. My IQ remained constant. I guess it really depends on what you consider a problem. After the treatments I wouldn't know who I was, where I was, or what I was doing there. It lasted for hours, but it would always fade. However, that's a small price to pay to save your life.

I had done every possible drug, and combination, including 'off-label'. (I was taking 26 Ritalin SR a *day* as part of a study - you'd think I'd be bouncing off the walls, when in fact I would take 5 tablets a couple hours before bed and I slept just fine. The normal daily dosage for adults is 3.) Once you have done it all, there really isn't much left to lose.

In the end most people who look into ECT treatments are looking at a choice. ECT or suicide.

Many people choose the former, some choose the latter.