Angela goes bilateral...

Wednesday, March 10 at 4:45 p.m. The phone rings.

"What do you think of the idea of me trying bilateral?" Angela asked.

Her psychiatrist in charge of her current course of Electroconvulsive Therapy had raised the issue in a telephone conversation earlier that day. 

WE DISCUSSED MAKING THE SWITCH

For about 15 minutes we discussed her concerns about making the switch, much in the way we had when she called and asked me, "What do you think of ECT?" back in early January. 

Angela explained that her doctor had made the suggestion because was she might progress more quickly with bilateral versus unilateral ECT. She has had 12 unilateral ECT treatments over the last six and a half weeks. 

"I'm definitely going for the extra four weeks," she said, referring to the option she was given when she first discussed her treatment course and the study on memory loss in which she's involved. "But I'm worried about changing things mid-stream." 

Ultimately, I suggested she speak to her outpatient psychiatrist, who knows more about her psychiatric history and about the differences between unilateral and bilateral ECT than I do. 

She agreed and signed off.

In the meantime, I started nosing around the Internet for a good, reliable distinction between the two variations on ECT administration, without much luck. Most sources were dated in the last century and not very reliable, as far as I could tell.

Within 10 minutes, Angela called again.

"I'm having my first bilateral ECT treatment tomorrow," she said. "I'm going to try it. I discussed it with my psychiatrist and she thinks is a good idea. If I find it's too hard on me, I can always go back to unilateral."

UNILATERAL VERSUS BILATERAL ECT

Wednesday, March 10, 5:41 p.m. 

I fired off a note to my mentor and friend, fellow blogger and sage, Tufts University clinical professor of psychiatry Ronald Pies, MD. 

"I have a question for you. Angela has decided on her doctors' recommendations to try bilateral ECT. She's not progressing fast enough, I guess. She's going to have her first bilateral treatment tomorrow. I want to post about it on Friday. Although, I see an impressive improvement. It's not enough. She's in week seven and has decided to go for 12 weeks. 

"If I could quote you and link to a good article that describes the pros and cons of bilateral versus unilateral ECT, something recent, in this century, that would be perfect. I've looked and I cannot find anything. Am I missing something? Is there something in the archives of Psychiatric Times that I cannot see? I'd rather quote you and link to an article on this ultra controversial subject, but I'm a little stumped." 

At 8:07, Ron's email arrived:

"Given that these are very technical matters, I thought the comments from the Royal College of Psychiatrists, 2008, would be more helpful than a journal paper," he wrote. "I think this really summarizes the situation, as I understand it, quite well. It comes down to a trade-off between very high efficacy, significant cognitive side effects [bilateral ECT] and high efficacy, mild-to-moderate cognitive side effects [unilateral, non-dominant ECT]. There really is no “right” or “wrong” decision."

NO "RIGHT" OR "WRONG" DECISION 

"In bilateral ECT, the electrical current is passed across the whole brain; in unilateral ECT, it is just passed across one side. Both of them cause a seizure in the whole of the brain. Although there is a lot of research being done, it's still not clear which type of ECT is 'best'. 

"Bilateral ECT seems to work more quickly and effectively and it's probably the most widely used in Britain; however bilateral ECT seems to cause more side effects. Unilateral ECT has fewer side effects, but may not be as effective; unilateral ECT is also more difficult to do properly. 

"Sometimes ECT clinics will start a course of treatment with bilateral ECT and switch to unilateral if the patient experiences side effects. Alternatively they may start with unilateral and switch to bilateral if recovery isn't happening. The choice of bilateral or unilateral ECT will depend on the needs and wishes of the patient, the opinion of their doctor and the skills of the ECT team." 

(The boldface is Ron's – not mine.)

Thursday, March 11 at 4:05 p.m.

When I get home from Seneca, I pick up a voicemail message Angela left on my home phone at 1:13 p.m. 

"Hi. It's me. Just checking in. Call me."

HER VOICE SOUNDED COMPLETELY DIFFERENT...  NEW

It doesn't sound like her. At all. I barely recognize her voice, but from the log on my telephone screen, I know it is.

Instantly, I call her back. 

"How are you?" I ask.

There's a liveliness in her voice I've never heard before. Ever. We met in 2006, on the phone. She called me when I was still working at The Toronto Sun. I knew nothing, then, of her psychiatric history or her depression.

"I feel good, but confused," she says.

I can't get over her tone. It's sharper. Stronger.

"Can you describe your confusion?" 

"It's a little bit of confusion, like I can't remember everything I'm supposed to remember," she says.

"What do you mean?"

"Well... it like my thoughts are dull," she says. "I guess I'd call it mild confusion, but it's more pronounced than before."

She said she slept most of the afternoon, following her first bilateral ECT treatment at 7:15 a.m. that morning.

"I just got up," she said. 

I couldn't believe the way she sounded. 

"Maybe I'm spunky. The bilateral treatment was great!" she said. "There were three medical students with the psychiatrist and so she explained everything she was doing very carefully to them, and to me. She told them that I had been having unilateral and that now I'm having bilateral. And so far, I think I can handle it, so I'm going to continue with it." 

Then she started chatting about how much money she had spent that day on new brakes and tires for her car.

"It needed to be done, so we finally got our act together and did it," she said.

TODAY, SHE'S COMING UP HERE AND WE'RE CELEBRATING!

This was the most proactive thing she had done in months. Two weeks ago, she couldn't get it together to get out of her apartment and go for a walk on a sunny day. 

"Oh, and you know what? I had a good time with my anaesthesiologist today," she said. "When he gave me my drugs, he said, 'Have a good sleep.' And you know what I said to him?"

"No, Angela. Tell me."

"I said, 'Night, night!'" 

She was laughing. Really laughing. 

So, today we're celebrating. Right after she sees her psychiatrist this morning at 10 a.m. she's driving up here and we're going out for lunch. 

And I can't wait to see her!

 

Comments

[susan]

Sandy,

I am so happy for Angela, I really really am. I just wonder why is it working for Angela and it failed so miserably for me and several other people I know.

It just goes to show you how wonderful your brain is, and how unique we all are.

I wish I could have had lunch with the two of you.

Love, Susan

P.S. Mine was bilateral.

[JR Jake]

In order to get to the root cause of any disease process, it is imperative to know the baseline or foundation by which the symptoms arise. To soon, too quickly, has become a mantra of many medical professionals. They slam patients with drugs and therapies well before there time.

Speaking of time, if profesionals would attain more patient history, to the extreme, including labs, familial and environmental surroundings. I watched as my younger brother became more attached to 'his personalities' predominate the more drugs introduced and the less counseling he received. What is the cost benefit to the patient, the insurance and society treating versus non appropriate treatment for the patient?

If we are ever going to address mental health issues we need to be exhaustive in the cause and less on the therapy so we can create a blueprint for the genomes of the various diseases. Just one man's opinion.

[Julie]

as i struggle through my own recovery, this gives me hope.

i'm sure you two had a lovely lunch.

great news all round :)

[Sandy Naiman]

Hello Susan,

I read your comment yesterday and you've been on my mind ever since.

Let me try to explain why. Please know that what I'm about to say is underscored with enormous empathy and compassion for you and what you've experienced. And you know that I know your story well.

First, it's always problematic to make comparisons between two essentially and extremely different people in totally different circumstances.

You and Angela are entirely different people who live dramatically different lives and have totally different psychiatric histories.

You were treated with ECT in the U.S. and Angela in Canada.

You had bilateral ECT from the outset. Angela has had unilateral ECT for her first 12 treatments and has now decided on her doctors’ recommendations to try bilateral and she’s only had one bilateral treatment.

I honestly believe that you are holding onto your experience, which, admittedly, wasn’t a good one. You know that there is enormous variation in ECT depending on a vast number of variables, not the least of which are the skills and techniques of the psychiatrists administering these treatments.

As well, there is an added consideration – the level of sophistication of all the hardware and technology used in administering ECT. Angela is at a state-of-the-art teaching hospital and she is part of a four-year multi-centre study.

I'm afraid you cannot ignore these contrasts between your ECT experience and hers.

You are an extraordinary person with a brilliant and beautiful mind. You write like a dream. Believe it, Susan. It’s true. I read every word you write. You have a lyrical heart and you are one of the most generous spirits I’ve ever known.

You believe you are not the person you once were because of your ECT experience. Trust me, none of us is. With or without ECT. I'm not. We're always changing, growing and constantly aging. We're affected by our experiences and when one is as exquisitely sensitive as are you, you change. Often for the better. Sometimes, not. That's the journey of life, I suppose.

I wish you would believe how extraordinary now you are.

Because you are!

With affection and admiration,
sln

[Sheila(Gardener)]

Hello, Sandy,

Very happy to learn that Angela's treatment is continuing to work for her - very brave to go for the bilateral. I have noticed that the opinions regarding ECT have been very emotional. On the one hand there is the fortunate success of Angela and on the other is the unfortunate experience of others. Not only do people lose hope that ECT is the answer to their ongoing agony that they suffer with their depression, but now they also have the constant reminder that it failed because the side effect of memory loss. Having recently begun having difficulty with my own memory function (age, my doctor tells me -oh,joy!) I still can't fully appreciate what these people are going through because it is their unique experience, not mine. I can understand, however, why they would be upset by it all and why there is continued apprehension about ECT.

As you mention we are always changing and that Susan's changes are not necessarily because of her ECT experience - I will have to agree that we are continually changing. I too, am not the same person I was and I have not had ECT and not on medication. Is it because of my experience with depression - for the most part I would think that yes, I have changed because of my recurrent experiences with depression. A person can't successfully come out of a depressive episode without gaining some incredible insight and insight has a way of changing things. I look at a lot of things in life differently than others. I am more accepting of other people's quirks but have yet to accept my own. But that has more to do with where I am at this moment. When my brain is healthy I have much better control over the thoughts it thinks and I am content with who I am. However, when I feel my brain is not well then all sorts of things happen I become exhausted and my defences go down and the "iceberg" thoughts get the better of me and I am not the person I want to be. I become, in my mind, the person I thought I'd left behind - which is what I want to do - leave her behind. And then I struggle and it is trying on me just to get through a day.

I will agree that all of our experiences with our mental health are as unique as we are. What works for some, may not work for others and there may be no logical answer as to "why", but then again there is no logical answer to "why" we become ill in the first place. All we can do is just keep holding on. One more minute, hour, day, week, month. One foot in front of the other is how we make it through. Even if some days are by miracle that we get through them at all.

Guess I'm feeling slightly better today. Just thought I'd babble a bit today.

Thanks, Sandy for your sharing moments.

Thanks for your email reply a while back.

[Sandy Naiman]

Dear Sheila and Jake and Julie,

Please forgive me for taking so long to respond. My life is a little hectic right now and sometimes I cannot be as diligent in keeping up to date with my correspondence with you as I wish.

Your support of Angela and her journey is heartening and believe me, she reads everything here and is very grateful for all your comments and concerns, even your criticisms and questions. She finds the dialogue we have enormously interesting and in many cases, instructive and enlightening.

She loves the "community" to which she now belongs.

Sheila, in particular, I want to mention that another of our followers, more invisibly, but none the less attentive to this conversation, was very moved by what you shared so generously and courageously with us.

Here are her artfully penned and insightful thoughts and feelings in response to yours:

"I wanted to talk a little about Sheila Gardener. I was deeply moved by her comment.

"I viscerally identified with her pain. Especially, how getting through certain days requires a virtual miracle. What courage she has, I wanted to reach out to her, like a blood brother or sister.

"I noticed how difficult it was for her to even articulate her depression.

"Depression at it's deepest depths remains elusive and is very difficult to comprehend. I think that is why so many people will suffer in silence.

"The best description to date which I have read has been in " Darkness Visible", by William Styron. Perhaps, it took a great, poetic mind to do it. He thought the word " depression ", was a puny, inadeqaute word to describe the malaise."

Thank you for sharing with us. You make this place a "community" in the truest sense. Here we all share a vision. Of thriving and living life to its fullest, with meaning and in recovery.

With gratitude for your words and your insights,
sln

[Sheila]

Thanks, Sandy,

I feel a little less alone now. The isolation that I feel when I am in a depressed mood can be crippling. So many times in my sadness I have felt so terribly alone and I have searched for the answer to my question - am I "normal" even in a depressed stated I wanted to know if what I was feeling was normal - do others have these same thoughts & feelings? In the dispair of my darkest moments I have felt like such a freak - always thinking I had to be the only person like this. I do know this is not true - but when I am in the middle of it, I certainly feel like I am and it only compounds my problems.

Today I explained to someone how my brain changes me when I'm depressed. You know that the "real" you is in there somewhere trying to regain some control over this brain-gone-wild and you want to scream out to people that "this isn't me" but you know that no one will hear your screams or understand how it couldn't be you.

The sun has been glorious lately, which is a true blessing and has improved my mood. My spiral into the depths has stopped. I still don't have any motivation to do much of what I need to do, but it's a start.

Thanks again, Sandy, for providing a safe forum. Without your kind encouragement I would not have found the courage to come out from my behind the scene e-mails to you - it has taken a long time to feel comfortable enough to use my first name - even in all it's anonymity.

I would also like to add that I think every person who survives depression (or any mental illness) should be given the "Courage to Come Back" award. And yes, "depression" does not even begin to describe the agonizing pain of it's sufferers.

One step, two steps, three steps, four.