Sunday, July 11, 2010

ECT I: Making the Decision

One thing I have really wanted to post about is my experiences, both positive and negative, with the electroconvulsive therapy treatments (ECT) I received in December and January. I want to write about my experiences with ECT, but I do not want what I write to negatively impact someone else's decision to consider ECT if they are in need of help.

If you are trying to make the decision to have, or not have ECT, please know that my story is just one of many. On top of that, despite some of my negative experiences, I would do it again, because something about the ECT helped me on some level. (I will try to explain that later in another post)

As a person who has had to make the decision, my advice about deciding on whether to have ECT or not, would be to approach a medical professional, a psychiatrist if possible, who you trust and ask them to help you wade through the information and make an informed choice.

For me, choosing to have ECT was one of the most difficult decisions I ever had to make. It is my brain, and even though I hate my depression and anxiety, it's the only brain I have...and if I was to feel better I wanted to know it would be intact after the treatments.

My choice was made even more difficult by how little information I could find that felt like a trustworthy and balanced perspective about the treatments, and potential gains or losses, and/or side effects.

At the hospital, all the information I was given felt like propaganda. The benefits were highlighted over and over again, but the potential side effects were glossed over, diminished, and when I asked about them, pretty much dismissed. Even after I had the treatments, I felt like my side effects were constantly dismissed.

(Note: My own pdoc expressed that I was having the side effect difficulties I was expressing to the other Drs) It was incredibly important that I knew he could see what was happening, because I already felt like I was losing my mind. I did not need the psychiatrists insinuating that I was imagining my ECT side effects. I found the dismissal of my experiences intensely frustrating.

Before I had ECT I met with the Psychiatrist who was to oversee/perform my treatments. We talked. I asked her about potential side effects, commenting that I had read several accounts of ECT and many people had stated they had longterm, and sometimes severe memory problems. The Dr looked at me and suggested that(paraphrase "...the information I read was biased...look at who is writing these articles".

Inside my head I thought...but I am one of those people; a person with a mental illness. I recognize that our psychiatric illnesses can sometimes interfere with our perception of reality, but I am pretty certain my opinions and experiences cannot all be tossed aside as though they were the rantings of a lunatic.

I do have some valid opinions of my experiences, and I do believe I am capable of writing a opinion piece that tells my truth about an experience. I also understand that my truth is not always generalizable to other people. Likewise other people's experiences are not always generalizable to me. The fact remains though, just because someone is ill, does not mean they have no important information to share.

To tell you the truth, a big part of me distrusts pharmaceutical companies, and research organizations, more than I distrust the accounts of people who have actually been through the experiences. There is so little really known about the human brain, so much money involved in drug and treatment research, and so many reasons for an organization to find a positive outcome, that I am not sure how unbiased any medication or treatment research is.

I am not saying I would blindly follow medical advice from someone writing on the internet, but I do read what others have to say, and I would take that information to a medical doctor I trusted and ask them to help me make an informed decision.

In the end, with regards to my ECT treatments I found as much out as I could about the procedure and then I asked my psychiatrist, Dr. X, to share his opinion and information about ECT. I trust him completely. With his help, I made the best decision I could, based on the information available at the time.

Honestly, even though I had, and continue to have, some difficulties due to my ECT treatments, I would have ECT again. I was going to kill myself when I went in for the treaments. I have never been that close to acting on my thoughts. I think the ECT lifted my mood enough for me to work my way out of that hell and into some state of purgatory. So yes, I would do it again.


Anonymous said...

First, I am SO glad to see you writing again, and I'm glad you are writing about something that not only means a lot to you but that is important to others as well.

I too have found it very frustrating when my docs have essentially dismissed everything I tell them about side effects, symptoms, my thoughts on treatment, etc. They seem to feel they are the experts and my job is just to listen to them and do as I am told. If I take the initiative to learn about meds, treatments, my disease, via the internet they brush that off as "just the internet", yet when I ask them to provide me with the information I get a dumbed down version. I remember once being handed a piece of paper listing the side effects for a certain med and when I asked what "neuroleptic malignant syndrome" was, they told me it wasn't important. (yeah...)

Anyways, we learn a lot from reading about the experiences of others. Thanks for posting yours.

Anonymous said...

Thanks for sharing...glad you feel it helped you.

It's funny; I kept waiting for you to expose some crazy, huge, major info or insight that was top secret or something. LoL

Alish Smith said...

Therapy treatments are very nice....
Electro-convulsive Therapy

Gellicle said...

Thanks for blogging. I have a dear friend who suffers from severe depression and I have witnessed his darkest days and nights and empathize with his struggles to continue to exist. My heart aches for him and I pray he will find some relief everytime his psychiatrist tries something new with him. I feel so helpless as we are many hours drive apart and my support has to be long distance. This week, after several particularly dark weeks his doctor has suggested one more med change then ECT as the next option. I have been reading and learning about ECT so that I may understand what he is facing and hope that I will be more educated if he chooses this option. You have helped me remember how very difficult his days are since he is so withdrawn and communicates so infrequently lately. Your blog is obviously important to many people and I hope you continue to post and share and heal and grow. I will be looking for you!

Rach said...

Aqua, have you seen this:

Anonymous said...

Thank you for sharing your experience with ECT. I too have been told by my psychiatrist that I should have it done, but I too have my doubts (like you said - it's the ONLY brain I have). I also have done quite a bit of research on it myself - and got the advice of a couple of therapists - both of whom told me NOT to do it - my wonderful therapist, in fact, said to me - the ONLY time I would say "yes - do it" is if you were truly suicidal and therefore it WOULD BE the best option for you" - so it looks like in your situation that it did the job it needed to do - and that's so good to hear! I'm not at that point (I have been in the past) - but I'm always interested in hearing what others have to say who have gone through this procedure - it's very helpful!

It looks like you haven't posted in a few months - I hope you do post again as I am curious as to how you are feeling - hopefully okay!

Take care,

Anonymous said...

Thank you for sharing your experience. It is difficult with all this information to really understand what the benefits are. I too am reluctant to try medication because it isn't really solving the problem. I know that there are things I need to work through, personal issues as well as social issues, and I feel that taking these medications is just covering up the problem.

The 320 Club said...

Hi. I find your posts very interesting. Right up front I want to say you are clearly not a "raving lunatic." I sincerely hope you do not beat yourself up like that.
I was hospitalized(MDE/addiction issues) from September 12 to Oct 13 of this year. According to my pre-Sept. 12 journal entries I was suicidal, depressed,absolutely depleted. I felt like I'd been in a car wreck, in shock etc. You should know I was living in my car, as well. How I even took myself to the hospital is a wonder but I am so grateful to them. My experience there was so positive, although it took me weeks to feel better. They really understood, were non-judgemental and loved me up. My pdoc introduced the idea of ECT. Like you, I was reticent. My sister had had shock therapy in 1970. Her experience may have been closer to Jack Nicholson's character in One Flew! Also, I am a guitarist and the one thing I didn't want to forget was how to play.... guitar is the one thing of absolute pleasure in my life. On the other hand, I was at wit's end and just willing to try anything to pry me out of this debilitating depression. I had 7 sessions spread out over a couple of weeks. Waking up after a session with a headache and no memory of having a session was a bit disconcerting. HOWEVER, the result has been nearly miraculous. The depression has lifted. I feel somewhat less anxious and still freshly back in 12 step meetings for my addiction. But overall, I feel I have the energy, strength and motivation to take life on again. I notice my concentration is better, especially when conversing with my children, friends and therapist. Like you, I am not promoting ECT. I am only saying how it worked for me and to express gratitude to the people who helped me. I hope to hear more from you. Can you bring us up to date on how you are doing?

DOT said...

I am catching up with your blog and note this post is now some months old. I do hope you are well.

I cannot compare my mental issues with yours. I go through bouts of lows, I doubt whether they would register as clinical, but they still prove an arm-wrestle.

It seems callous, but reading of others who fight on the same field, albeit at the sharp end, and retain their integrity really helps.

Post soon. x

Steph R said...

If it is alright I wanted to pass along a link to short article that gives a broad description of the EMT procedure. The author is relatively non bias in presentation and the language is easy to understand for others to at least get a idea of what the actual procedure consists of. You have not posted in quite some time. Hope you are doing alright.

Thank you @Rach for the link to the article

Major Depression said...

I hope you're doing well now aqua
Don't lose your spirit and may God Bless You :)