ECT on Angela's mind and mine...

At 10:14 a.m. Saturday, Angela sent me the following email:

"I decided not to go away with Rob (her boyfriend) this weekend because I'm uncertain as to whether or not I can keep it together. Today, I am tearful, the feeling of sadness is overwhelming and often leads to suicidal thoughts.

"Maybe the ECT doesn't have the clout as yet to keep unwanted thoughts suppressed, and I sure as hell don't have the capacity to keep them at bay.

"I want it to be Monday so I can have another treatment. I want to know if the ECT is going to stick with me and work for me. My patience wears thin, my eyes tearful, and my heart has broken into millions of tiny pieces. 

"I hate this!"

I called her as soon as I read her message. She sounded more buoyant than I had expected. Her sinking mood admittedly was caused by other problems in her life that have nothing whatsoever to do with her psychiatric condition and the trauma that's the root cause of her depression and suicidal ideation.

"Life's complicated," she said, referring to these problems that seem to her to be insurmountable right now with all that's happening to her – all the unknowns and anxieties about her new electroconvulsive therapy protocol. 

She's concerned about her mother who isn't well and will be visiting her this weekend. Angela is terribly anxious about how her mother will react to her having ECT. She hasn't yet told her about it.

"And there's lots more," she added. "It's complicated."

She wanted to spend the weekend alone and I couldn't persuade her to meet me for lunch or to come and have dinner with Marty and me on Saturday night. She didn't seem open to company at all, insisting that she wanted to stay home, by herself, with her three cats – to watch the hockey game.

So, I signed off, reassuring her that I was here and at her beck and call if she wants to talk.

Meanwhile, to say I have ECT on my mind is an understatement.

Constantly, I was monitoring the comments to my Friday post. By Saturday night, there were 12, excluding my responses. (This morning, there are 18 in all.)

But one in particular that came in Saturday disturbed me and not because of its angry tone. I didn't know what to make of it, despite my attempts at researching it. 

I'm no scientist and ECT is a highly scientific, complex procedure with remarkable inconsistencies depending on widely specific variables. 

I was so confused that on Saturday at 6:23 p.m., reluctantly, I wrote to my friend, psychiatrist Ron Pies of Tufts University, who is as committed to public education as I am. We are communicating often these days as I dig deeper into the contentious realm of ECT.

He has introduced me online to psychiatrist Max Fink, a leading U.S. authority on ECT, who generously agreed to answer my questions if I email them to him. On the thorny question of "involuntary" ECT, Ron also consulted leading forensic psychiatry expert Professor Daniel W. Shurman, the M.D. Anderson Foundation Endowed Professor of Health Law, Dedman School of Law at Southern Methodist University. In the weeks to come, I will be sharing this and other information I'm uncovering as Angela continues with her eight-week course of twice weekly ECT treatments. Depending on her response, this course could be extended to 12-weeks.

Time will tell.

In my Saturday night email to Ron, I admitted: "I don't know how to respond to this comment," referring to a writer named Ginger who sited a 2007 study by Columbia University psychologist Harold Sackeim. "I've found Harold Sackeim's paper, but I'm not sure he's using the most up-to-date ECT methodology nor am I sure why he's reversed his opinion.

"Everybody has a story," I wrote. "A different story. I think that there must be variation in quality of equipment and methodology in different hospitals. Differences between outcomes in bilateral versus unilateral. I can't become an expert in ECT. I'm reading as fast as I can, I'm not really adept at interpreting scientific research papers. Perhaps I've opened a Pandora's box with this series and now I'm in real trouble."

Ron responded at 12:10 a.m. on Sunday morning. 

"Believe me, I sympathize. I waded through not only the 2007 paper by Dr. Sackeim's group, but also their 2008 follow-up study, which is of considerable importance, and which (I believe) clearly runs counter to the overblown claims by Linda Andre," of the The Committee for Truth in Psychiatry. 

"Even with my training, I had trouble teasing out the clinical significance of many of these findings, as contrasted with the statistical significance. There is a big difference. The bottom line: it's like in real estate, but instead of "Location, location, location," the slogan is "Technique, technique, technique!" 

"So much depends on using the newest and most "cognition-sparing" techniques. When you do so the results appear to be very good, without substantial cognitive loss in most individuals, and with substantial improvement in mood."

Ron signed off promising to find "a more definitive response" within a few days after getting "some consultation of my own."

Meanwhile, I found this TED.com talk by Sherwin Nuland on Electroshock Therapy. Nuland is an American surgeon, now retired, and prolific, award-winning author. He gave this stunning this talk in 2001 and it was first released in 2007. It's well worth 22 minutes of your time.

On Sunday morning, Angela and I spoke on the phone three or four times.

"I can't wait until Monday," she said anxiously and often. "I can't wait for my next treatment. I want it to kick in. It seems to take so long. I don't want to wait. I want to be cured now. "

She's also anxious because her current psychiatrist who is administering her ECT treatments is only going to continue for this week and next week, she'll have another doctor, a doctor she hasn't yet met. "I wish there was more consistency," she said.

I reminded her that the University Health Network is a teaching hospital and this is a standard practice in teaching hospitals. That wasn't what she wanted to hear.  

Her despondency continued later Sunday evening. It was mild. She would giggle from time to time and joke with me, even though the word she tended to use to describe how she felt was "glum." When I asked her about her suicidal thoughts, she said she kept thinking, "What's the point of all this?" 

I sent her the link to Nuland's talk and another 12-minute talk he gave in 2003 that was posted last month, On Hope. She said she'd have a look.

Yesterday morning, her third ECT treatment went without a hitch. When I called her at 9:45 a.m., she didn't answer the phone. At 10:43 a.m., she sent me the following note:

"Just checking in post ECT... Have a little confusion but nothing serious. I don't feel well today... suicidal thoughts and just glum. Wish this treatment will hurry up and work!!!

"Hope you're having a good day!"

We spoke a few hours later and her confusion was gone. She couldn't understand why she wasn't having three treatments a week, the way ECT is typically administered in the U.S. and in the U.K. She said she'd prefer that.

This morning, still "glum," she said a few hours ago. "I remember absolutely everything now and the suicidal thoughts are gone completely. No side effects. But why does this take so long to kick in." 

Later today she'll be seeing her psychiatrist. I sense from what she says and even more, from some of her silences, that she doesn't realize just how much she needs this therapeutic support right now.

I suspect they'll have lots to discuss.

Comments

[Jennifer]

I have just started reading your posts about Angela. I hope that the treatment works for her. I suffer from depression but no where near the same extent. With medication (celexa) and cognitive therapy I have been able to manage my illness. I do not think people should judge what course of treatment is chosen. It is a very personal choice. What works for one may not work for another.

[dragonfly]

Dear Sandy
I think this discussion is great.keep the lines of communication open!
Thanks again for the blog!

[Josh]

I hope that things work out for her though and that this treatment helps her out. I know she is wishing she was cured quick, but as I realized myself things do take time.

I am battling my own anxiety these past weeks with my job as a IT for a catholic school board and the demands and things that occur. At times it's hard to focus lately, but reading stuff like this gives me a lift to know that there are people out there dealing with things like anxiety and ECT and what not and there being strong too.

I'm glad I got a handful of patience though when it was being given out by god, as I cannot see my councillor till next Tuesday, January 9th. I have been experencing many side effects of stress. Disorientation, loss of feeling in the body and chest pain.

It's great that you keep in touch with her though and I enjoy reading the multiple posts about this ECT situation. It definatly lets you know how other people are dealing with situations of mental issues and gives you an empowered feeling at times, when you feel all is lost and your not sure what to do or who to turn to.

I would love to discuss via instant messenger or even in person about mental health seminars and what not for people and the scheduling times that they have for some of them. As I've noticed just this week that there are some stress,anxiety,depressions sessions in my area but it seems that there during my working hours and start at 3pm and go till 5pm, but I don't get off till 4pm. So it doesn't help someone like myself much.

[Sandy Naiman]

Hi,

Good to hear from you. No matter how you feel about this thorniest of mental health treatments.

Oh, dear. I'm feeling overwhelmed.

I am immersing myself in ECT and beginning to see it as a treatment like any other, like radiation or chemotherapy for cancer. Nothing pleasant about burning your body or poisoning it, when you think about it.

(Dialysis is no fun, trust me. But it kept me alive for two years, though I vomited three times a day because it is no replacement for a healthy kidney. That's another story.)

There are literally thousands of cancers. No two are identical. No two bodies are identical. So it is with a mental health issue, with depression or mania – and ECT. Thousands of mental health issues. Different in each of us.

ECT is a useful treatment for some of us, but not all of us. It would have died long ago if it were simply a bust. But it's not only back, it's being used more and more. Not because it's not working, but because it is working. Some people are helped by this treatment. Others are not. That's true of all illnesses. Physical and mental.

With ECT, some people experience memory loss to varying degrees. For some it’s temporary. For some, it’s more permanent. Some enjoy a greatly improved quality of life after ECT, despite the memory loss. The sacrifice of memory is worth the rich lives they can live. For others, their memory loss destroys their quality of life. They cannot get past that. Or maybe they didn't have such a terrific quality of life to begin with... I don't know. I'm just brainstorming here. Letting my mind go.

Ultimately, the treatment cannot be guaranteed. What treatments can? There are always risks. Life is a risk.

Much of the fear around ECT stems from the way it’s portrayed in old and out of date sources, Hollywood films that leave an indelible and incorrect imprint in our collective consciousness. Things are so different now.

I do not know what the outcome of Angela's ECT course of treatment will be. That is not why I chose to follow her. I know she is getting good care by well-trained doctors in a state of the art facility.

ECT doesn't correct the problems in your life. It can, however, when it's successful, allow you to deal with those problems in a healthier way, with a clearer mind and a fresher perspective.

Ultimately, I guess you have to weigh the value of your quality of with the value of the memories you lose, if they get lost forever. What if you can go back to work and enjoy our relationships and laugh and love in the now? I'm just asking...

I suspect I have lost some of my memory from my bilateral ECT in the mid-1960s and early-1970s. I can't remember. It doesn't matter to me because I was so terribly ill during those years, the ECT snapped me out of my mania, brought me back to earth.

There weren't any alternatives for me.

The point is, my memory now, is fine … as far as I know. As is my mind, I think. And I have a glorious quality of life – not without its stresses and problems, though. What would life be without them? What a bland and boring picture that is. Give me a good problem to conquer. It's satisfying when I do.

We're all different and the jury is still out on ECT. I think it will be permanently “out”… but "Forced ECT"? Or "Involuntary ECT"?

That's another matter. What's interesting is that ECT is an option for people who have run out of options. I wonder what would happen to all those people who were given "Involuntary ECT" if they had not been given it?

You most often hear from those who claim their lives are destroyed. I wonder if their lives would be any better without it? Where would they be?

Questions. Lots of questions.

I’m still working on it and I’m so grateful for your candour and honesty, your comments, reflections, perspectives, doubts, questions, stories, sharing, community.

Thank you and, as always, speak soon.

As this story unfolds…

[Ron Pies MD]

Another fine post, Sandy--your balance and fairness in presenting this much misunderstood topic is very impressive. One tiny correction:
the professor's name is Daniel W. Shuman, not Shurman.

Keep up the great public education!

[Sandy Naiman]

Thanks for this correction, Ron.

As you can well imagine, this is a subject so complex, so contentious, so vast, I'm feeling a little overwhelmed. It's exhausting. There's so much to learn. And it's not easy. New discoveries all the time. When I feel this way, I make typographical errors. No one would be able to catch this one, except me. And now, thankfully, you.

When I quote Professor Shuman, as I plan to do when I broach the subject of "Involuntary ECT", I will be extremely careful to spell his name correctly.

One last thank you. At the moment, I feel swamped with so much to learn and so many questions.

I couldn't keep going without your encouragement, your support, your guidance – your invaluable contribution to this series. You've opened countless doors for me to the leading experts in this field and your cogent commentary helps to bring clarity to the confusion swirling around ECT.

I am so grateful to you.

sln

[Carolyn]

I think to even wonder if involuntary ECT might have been worth it, is sacrelegious to the mental health movement, so to speak. It is not okay, ever, to have treatments given involuntarily. If you can't make a decision yourself because your incapacitated mentally, at least it should be the families decision. Any and all medical procedures done without consent are equivalent to rape, forced and without consent. Maybe those who didn't want it, would have later died or committed suicide, but that would have been their choice. As angry as your are about your lithium, imagine the betrayal you would have felt if you never wanted it all along anyways. How would you feel if a doctor said to you, yes you suffered, you lost a kidney but maybe it was worth it?

We don't know whether or not receiving treatment they wanted was good or bad in the long run. But, I know either way, it was wrong. But involuntarily receiving medical treatments is either something you agree with or disagree with. I find it hard to believe you would even wonder whether it was okay. Mentally ill people have a right to make choices for their own body, don't you think so?

[Graeme]

A word to the wise: don't 'keep up with it' for too long or you might find yourself completely forgetting who you are!

I would highly recommend Wendy Funk's book What Difference Does It Make? (The Journey Of A Soul Survivor)
http://tinyurl.com/yj7yre4

[Sandy Naiman]

Hi Graeme,

I have a great deal of respect for The Icarus Project and your philosophy.

http://theicarusproject.net/about-us

I've looked into Wendy Funk and her book, as well. I think that people who, like Wendy, have difficult experiences with ECT or anything, for that matter, often write about it. It's cathartic and their stories are often compelling. That doesn't mean, however, that those stories are true for everyone.

We all have our own truths. There is no absolute truth. (Except, perhaps, that one.)

Far fewer people write and are able to have published the flip-sides of those horror stories. In the newspaper business, there's a sad truism.

"Good news is snooze news."

Also, people who have success with ECT often must continue maintenance ECT and have one treatment per week or so to maintain their mood stability and stave off depression. This is not a rule and everyone is different.

Thank you for sending me on my little trip into Wendy's life, her book and her anti-psychiatric passions. I don't share them. My experiences with psychiatrists, though not all beneficial and some deleterious, cannot convince me that because one or two practitioners made mistakes or erred in judgement, the entire specialty is evil.

That doesn't make sense to me and I do not live my life that way.

Take care and I thank you for your comment.

sln