ECT misrepresented AGAIN!

[Luna-]

I am just so angry I could burst into tears. I was sitting on the couch sewing when Days of Our Lives came on the TV. I don't follow it so I don't know the background - what I saw was a psychiatrist using ECT on a man to scare him into submission and control his mind (because the man knew something he was going to tell the police). The man was awake and convulsing and had the mouth guard they used to use in his mouth. Next to him was the evil pdoc (who was the Big Bad Guy's emissary) telling the man he would always be under their control, while he was having fits. He even had burn marks from the electrodes.

Cuckoo's Nest all over again! I get so angry and upset when this stereotype is reinforced in the media!! This is the image most people have of ECT!!! I'm afraid of having ECT, but with my bipolar depressions as severe as they can get, I may run out of medication options and have to have it one day. I'm almost more afraid of the opposition and shock (sorry, bad word choice) I will get from the people around me: family and friends.

My mom already doesn't like me taking meds (she won't even take a headache pill). She keeps asking me if the meds don't have side-effects (DUH! Yes of course they do Ma, but my bipolar has worse side-effects, one of which is a great likelihood of suicide - don't you remember when I tried??!!!) and wants to know their names so she can google them. I've refused to tell her the names and I don't say anything about my SEs.

If I am going to have ECT, I don't actually want my family or friends to know about it at all, I'll want to do it in secret, because this is the only image they have seen of ECT and I am going to have to defend the decision which I will be terrified to make! Doubt I'll get much support, they'll see it as the end of the line for me.

Days of our Lives is a silly soap opera but TONS of people watch it. It's just another strike against us - stigmatised for the illness, stigmatised for the treatment of the illness!!!

I'm such a meek, non-violent person but right now I could deck all those people! Hey 08hduc, wanna join me? Grrrrrrrrrrrrrrrrrr!

[Guest ASchwartz]

Hi Luna,

I agree with your assessment of how the media characterize mental illness, patients and psychiatrists. However, there is nothing much that can be done about it except to boycott those types of programs. You could write to the network or to the program directors and you may or may not get a response. Perhaps others in our community have some advice?

I am wondering why ECT is seen as an option for you? Is your depression that deep that it does not respond to medication and psychotherapy? That does happen, of course, but do you believe that you are at that point now?

When I worked in the psych hospitals I had a couple of very depressed patients who underwent ECT. It is nothing like what they portrayed on that stupid soap opera. It is not physically painful, the dose of ECT is kept low and they administer relaxants so that the convulsion is not severe. Its entirely different from what it was 50 years ago. And, it has been found to help many people who have the type of depression that does not quit. So, I know it can be beneficial.

How do you feel about the possibility and have other options been explored?

Allan

[SweetSue]

Hey Luna,

Ive had ECT in the past, coz well I was not responding to therapy or medication. I was scared outta my brain, and cried like a baby before hand. But you know it wasnt nearly as scarey as I imagined it to be. Thanks to The Wizard of Oz (the original one) my imagination was on over load and I guess it freaked me a tad - poor Dorothy (but then Im not exactly all that brave)

Allan is right, soaps dont portray the realities of ECT, and the stigma attached to it can drive a person nuts. Its just ignorance. Best to ignore it, coz lets face it, theres not a lot anyone can do to change it - unless they have a magic wand.

I guess all Im trying to say is well ECT has helped me in the past, and Im kinda grateful that I had the course of treatments. I hope that you can stabalise without having the procedures done, but if it comes to it, try not to be scared, sometimes it truely is a godsend.

Take care

Sue

[Luna-]

Hi Allan, thanks for weighing in on this issue.

(long response, sorry)

I agree with your assessment of how the media characterize mental illness, patients and psychiatrists. However, there is nothing much that can be done about it except to boycott those types of programs. You could write to the network or to the program directors and you may or may not get a response. Perhaps others in our community have some advice?

I don't think anything can be done about it either and writing to networks will likely be a futile exercise (unless we can gather a sizable number of writers). However I think we can address the misinformation by speaking up about it when we hear incorrect portrayals and explain that it is nothing like what the media portrays and that it can be very effective when meds have not helped.

When I worked in the psych hospitals I had a couple of very depressed patients who underwent ECT. It is nothing like what they portrayed on that stupid soap opera. It is not physically painful, the dose of ECT is kept low and they administer relaxants so that the convulsion is not severe. It’s entirely different from what it was 50 years ago. And, it has been found to help many people who have the type of depression that does not quit. So, I know it can be beneficial.(

I know it's nothing like it used to be, but most people don't know that and many still see it as a punishment/control thing and not as treatment - that's what angers me! :mad: The stigma around the Rx is actually worse than the illness; people see it as being for 'hopeless cases' at the end of the line, which it isn’t. I’ve even heard people say it causes brain damage and you’re never the same again! Grrr again. :mad:

The few people I know personally have not benefitted significantly, but I know of many who have (and thanks, SweetSue). Bad experiences must be weighed against good ones. Some people have horror stories about meds too, not just about ECT.

About my personal situation and my take on ECT:

I am wondering why ECT is seen as an option for you? Is your depression that deep that it does not respond to medication and psychotherapy? That does happen, of course, but do you believe that you are at that point now?

<snip>

… How do you feel about the possibility and have other options been explored?

Yes, some of my depressions have been that deep. Part of this is that the BP went unnoticed for so long (around 27 years) and was dx’ed as unipolar. During that time I was on numerous anti-depressants. As I'm sure you know, ADs given alone without added mood stabilisers can worsen BP - and in my case it definitely has. But no, I’m not at that point and how do I feel about the possibility? – Afraid! I'm not afraid of the procedure itself -I know it’s safe and painless- but of the memory loss the people I know have experienced.

ECT is still far away for me, there are many meds I have not yet tried, and new ones coming, so ECT is quite far down the list. However during last year's severe depression so many meds failed that my pdoc suggested ECT. I said that I was nowhere near ready for that - but during the worst times I was thinking that ANYTHING would be better than how I felt. Then ECT went from the ‘never’ category to the ‘future’ one.

Personally I think he jumped too quickly to the ECT option, giving up too early on the meds when there were still more options. I also felt that he was all about treating the depression and not about treating me. When I turned down the ECT, he sort of sighed and said, "well, OK". But I am a partner in my treatment and I want to have a say. I lost a lot of trust in him at that point. I stay with him only because a psychotherapist shares his practice, with whom I get on VERY well, who helps me enormously and has taught me many self-management techniques (including the TEA forms) and shown me just how much influence I can have on my BP with what I do and how I think. (He assesses me and liaises with the pdoc if he thinks I need a med re-evaluation, which the pdoc then does, based on his assessment. I really trust my therapist and his judgement, and the less I have to see the pdoc, the better.)

I’ve had both manic and depressive episodes since my therapist began to teach me, but not as severe. Whereas they previously seemed to descend on me randomly, I now see the early signs (mood chart), know my triggers better, know far more about what to do. Meds are a necessary evil for me, and they help, but what can you really do with them, other than swallow them? Psychotherapy tells me what I can do.

Psychotherapy + Meds are like 1+1=3 for me and earlier therapy has been life-altering. I credit it for where I am today, (which is further along from where I used to be). Before the BP Dx I was told that meds wouldn't help me, only therapy would, but once I found meds that worked, not permanently but at least for a few years, I improved considerably and in fact therapy became far more effective and my gains firmer. I grew, I dealt with childhood issues (growing up in an alcoholic home) to the point that I now feel it is water under the bridge and I’m more interested in today.

ECT, just like with meds, is a ‘potential risk versus potential benefit’ thing, isn’t it? If a future depressive episode becomes that intractable and my back is against the wall, the benefit will probably outweigh the risk. Plus, most of the memory loss seems to be about events during the treatment period – and when I’m that depressed, those horrible memories probably won’t be any great loss to me! So ECT remains an option.

What do others feel/think?

[tracey.f]

Hey Luna, how are you today?

This is something i have had as treatment, so if you don't mind i would like to comment.

I had 16 ect treatments before i said enough, this was because they weren't helping me and my husband said that he didn't want me to go through anymore!

My previous Pdoc had tried some treatments that didn't work and he suggested that he felt this my best option, i will say my family were set against this. I told them it's like charlie and the golden ticket, if that was my ticket out of my hell then i didn't care what the price was.I still think it was worth trying even though it didn't help, it could have and that was why i tried. I was desperate at that point.

As i said it didn't help me, i have problems with my memory at times now but i was told that this could happen.

I have also seen this treatment work wonders for people too, like medication we all take to treatments differently i guess. I have seen both sides, it isn't something i would do again.

My current pdoc asked me if i had gained anything from having ect, i said yes i had gained"Insight".

I think if you have options still open to you i would use them first, this is something you can look at further down the line if you feel you want/ need to. Options are the name of the game!

Good luck.

[Luna-]

Thanks, tracey.f

Yeah, ECT is still far down my list of options. Further down on my list than my pdoc's list! There are still many meds I haven't tried. Hopefully by the time I get through all those, there'll be new ones.

But I'm with you on the "if this is my ticket out of hell" - if all else has failed and life is an unbearable nightmare - then hey, show me where to sign!

During my last bad depression, when the pdoc suggested ECT, I gave it some serious thought and there were many days when I thought - 'ANYTHING ELSE but living like this, never mind if I lose memories, never mind the risks, I can't stay alive any longer'. If it gets that bad again for any length of time - then I'll sign and lie down. People who are shocked that we could consent to such a 'barbaric" treatment have not experienced that severe, lasting depression that eats away your soul.

[Guest ASchwartz]

Hi,

Oh yes, ECT is a very viable and useful form of treatment when other things just don't work. And, its successful. In addition, there are experimental treatments where a device like that used for heart patients, is placed inside the brain to give a slight electric charge when the chemical balance is going toward depression. You could ask your MD about that, too, although I don't yet know if its ready for use by the average psychiatrist and neurosurgeon.

Allan

[Luna-]

Yes, Deep Brain Stimulation or alternately Vagus Nerve Stimulation done with an implanted pace-maker for the brain.

In other words, your own personal, miniature, built-in ECT machine.