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Dr. Bob is Robert Hsiung, MD,
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Posted by chiron on July 2, 2008, at 20:27:18
In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06
I am PRO ECT, but of course individuals vary. Like I've mentioned on previous posts, after only 5-6, I felt better than I ever had in my life. The higher mood didn't last, but I was out of my deep hole that I had gotten into after a bad med trial (adderall & abilify).
I made the decision after talking to a few people who also had very positive experiences from it. I believe the 80% scientific studies are correct.
I did have some memory loss, but it wasn't debilitating and it was worth it. Definitely no brain damage.
Posted by linkadge on July 2, 2008, at 21:51:24
In reply to Re: ECT...I am scared to death » john51, posted by chiron on July 2, 2008, at 20:27:18
>I did have some memory loss, but it wasn't >debilitating and it was worth it. Definitely no >brain damage.
Unfortunately, brain damage isn't always something that can be subjectively diganosed.
Linkadge
Posted by BGB on July 3, 2008, at 0:55:28
In reply to Re: ECT...I am scared to death, posted by BGB on June 28, 2008, at 18:11:40
I re-read my post and I realized how anti-rTMS and how pro-ECT it was. I didn't mean it like that; I just wanted to justify my reasoning for one over the other.
I don't want to discount anyone's experiences with ECT, good or bad. I haven't had it so I don't know from first-hand knowledge, just from what I've read and been told by my doc. I know that many people have had horrible experiences, and I feel terrible about that. I have an idea of what the memory loss is like; I experienced memory loss due to lithium, and it was very debilitating at the time. It still haunts me today, twelve years later. I tell my friends the same stories dozens and dozens of times. They're used to it now.
Honestly, I hate to say this, but I really don't care if ECT does cause brain damage [DISCLAIMER: I am not saying that ECT does or does not cause brain damage!!!] and even more memory loss. I would love nothing more than to put a big fat bullet in my brain right now, so a little shock damage doesn't scare me in the least--it's got to be better than the bullet. That's pretty f'd up, huh? But, it really is how I feel and that sucks.
I did convince my doc to try an MAOI before we try ECT, so in a few weeks, once I've stopped all of my AD's, I'll be on something totally new (don't know what yet). I'm keeping my fingers crossed that it can help me avoid the big E, but if it doesn't they're gonna have to juice me up!
As for rTMS, if I had a whole bunch of money, I might consider it, but I'm apprehensive of spending that much money on something with such a low success rate. I am glad that it's out there and that there are doctors like mine that are performing it as I know it has helped many people. But it's just not for me right now.
Something that is very interesting to me is MST, Magnetic Seizure Therapy, which is a hybrid of ECT and rTMS. It basically uses a big magnet to cause a seizure just like ECT does, but without the electricity. You still have to be anesthetized and everything, but supposedly there are fewer side effects than with ECT. I can't find anywhere that does it, though. If anyone does, let us all know!!!
Posted by blueboy on July 3, 2008, at 13:42:24
In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06
> I have been to countless pdocs over the years and have tried just about every possible pmed and many combinations. My pdoc is basically saying that the only thing left to try is ECT. I have agreed to do it but I am SCARED TO DEATH at the prospect of the memory loss, possible loss of cognitive abilities, and from what others have told me...terrible headaches between treatments.
>
> Has anyone out there got any thing to offer either pro or con involving ECT???
>I am a bit anti-ECT, although not completely. My biggest problem with it is actually not with the procedure so much, as the failure of the Powers That Be to develop any rational protocol based on comprehensive research. Really, considering how long the procedure has been around (I know "The Bell Jar" refers to events in the 50's or 60's), the lack of solid record-keeping and research is unconscionable. If ECT were a new drug anti-depression drug being marketed by a pharmaceutical company, the FDA would laugh at the application.
In fact, the only reason we have ANY long-term statistics for broad population samples is because several states passed laws requiring psychiatrists and facilities to report all ECT treatment, including reported side effects, for six months after treatment is administered. Texas is the only one I am sure of, but I think California may have a similar law.
In spite of numerous anecdotal accounts of "ECT ruined my life", and similar accounts from some psychiatrists, and despite the frequency, expense and physical trauma of the procedure, only the most primitive attempts to quantify (much less explain) memory loss and other commonly reported cognitive problems have been made. Plus, the little work that has been done is inadequate in duration (short term only), sample size, sophistication of testing, breadth of testing, frequency of testing, controls (the best study I saw used a control group but did not attempt to regress the statistics for natural improvement in "learning the test"), etc.
And there has been absolutely no attempt to create validated protocols for testing/observation before or during a course of ECT therapy and adjusting the therapy against quantified guidelines. The protocol consists, pretty much, of people and their doctors deciding "this isn't helping" or "I'm getting more memory loss or cognitive problems than I can handle" and discontinuing therapy.
Medical science gets an "F" for ECT. They don't seem to have even a *clue* how or why it works, or for what patients. The APA's suggested informed consent form states a "20%" chance of short term memory loss; the best I can tell, however, they have no sound scientific basis for this number. They have no idea whether or not, or to what degree or in what kinds of people, long-term memory loss or cognitive disfunction may or may not occur. There is no scientifically-based protocol for maintenance treatments or adjunct drug therapy.
All this, despite the fact that the procedure has been performed on tens of thousands of patients annually for over 50 years -- Newsweek estimated 30,000 to 50,000 patients per year in 1990 -- at least some of whom claim to have had profound and permanent mental impairment.
(Even worse, most states will allow ECT to be given forcibly to non-criminal patient's, in extreme cases!)
Okay, rant over :) I would actually get ECT if I were desperate enough, especially if I were getting close to suicide. It does appear to be successful in perhaps half the cases, and extremely successful in some cases, in significantly reducing depression for a temporary period. I'd guess something like six months. And, in all fairness, a lot of people do seem to have minimal side effects. (All patients have some side effects, since all patients undergo repeated general anesthesia and severe physical convulsions. General anesthesia by itself, even without medical error, has inherent side effects such as grogginess, significant side effects (e.g. bad sore throat) perhaps 10% of the time, severe side effects (e.g. stroke) in perhaps 1 out of 10,000 cases, and causes death in perhaps 1 out of 250,000 cases. Most ECT patients report headaches and body soreness.)
In my own case, I was seriously considering getting a course of ECT, after decades of unsuccessful and often painful drug therapies for depression. Luckily I spent money at a national clinic to get a special diagnosis; I was rediagnosed from "major depressive episode" in the DSM's lexicon, to "Bipolar II", which apparently explains how badly I reacted to some of the drugs I tried. So I got a reprieve and can now try heaven-knows-how-many different new drugs, sigh.
Actually, the Lamictal I'm now taking appears to be doing some good with almost no side effects. Feel free to pray for me if you do that, or wish me well if you don't.
Bottom line: I'm scared of ECT, too. For myself, I've pretty much decided I won't do ECT unless I find myself actually forming plans to commit suicide.
Posted by johnj on July 3, 2008, at 23:00:58
In reply to Re: ECT...I am scared to death, posted by blueboy on July 3, 2008, at 13:42:24
I appreciate your thoughtful posts. I hope the bipolar dx is correct. That is great if lamcital is working for you that could tell you something right there. Have you ever tried lithium?
I have had many dx and all the drugs have hurt me so I am trying med free. We will see it if works. I will pray for you and please send some up for me too.
johnj
Posted by Zeba on July 3, 2008, at 23:12:56
In reply to Re: ECT...I am scared to death » john51, posted by chiron on July 2, 2008, at 20:27:18
chiron
I would be interested in the 80% positive experinece from ECT that you cite. In all my research before I decided to do ECT, I never saw anything about an 80% positive experience. For me it was devastating. I have some severed impairments now from just 7 RuL treatments from over a year ago. I am getting neuropsych testing done in two weeks, and then we shall see. You should know also that my husband (before he retired) was a neuropsychologist who was very opposed to me getting ECT. He said I might as well have someone hit me over the head with a sledgehammer. I was desperate, however, to get over feeling so profoundly depressed. I was not suicidal and was going to work every day, but my pdoc at that time kept pushing the ECT until I finally gave in. I am sorry now that I did it. I also broke a tooth from the ECT and now have to have a bridge as that tooth had a root canal and then got infected and had to be pulled.
I now have a new pdoc and am now on parnate which works well for me. I still have dips into depression, but I don't stay there.
Zeba
Posted by linkadge on July 4, 2008, at 7:55:39
In reply to Re: ECT...I am scared to death, posted by blueboy on July 3, 2008, at 13:42:24
>"Bipolar II", which apparently explains how >badly I reacted to some of the drugs I tried.
Its not necessarily that patients with bipolar II don't respond well to antidepressants. Its more, IMHO, that patients who don't respond well to antidepressants are called bipolar II.
Its good that you got something that works though (bottom line).
Linkadge
Posted by linkadge on July 4, 2008, at 7:57:43
In reply to Re: ECT...I am scared to death » chiron, posted by Zeba on July 3, 2008, at 23:12:56
70-80% is often quoted, but show me the meta analysis that came to this conclusion :)
If this statistic is not based on a meta analysis, but rather a few select studies here/there, then it is meaningless.
Linkadge
Posted by blueboy on July 4, 2008, at 9:01:47
In reply to Re: ECT...I am scared to death » chiron, posted by Zeba on July 3, 2008, at 23:12:56
> chiron
>
> I would be interested in the 80% positive experinece from ECT that you cite. In all my research before I decided to do ECT, I never saw anything about an 80% positive experience.Neither have I. The studies I have seen tend to show figures around 45-50% for number of patients showing improvement. BTW, most of them -- well, all the ones I have seen -- have serious methodological flaws.
Posted by Crotale on July 4, 2008, at 9:53:54
In reply to ECT...I am scared to death, posted by john51 on June 28, 2008, at 6:12:06
Well, I've been having ECT for the last few weeks and although I have gotten some headaches, and I've been sort of confused upon waking, those are the only side effects I've had and they're not so bad. However, memory problems are pretty common with ECT (although from what I gather from the reading I've been doing in medical journals & textbooks, the cognitive side effects generally aren't permanent).
I bet there are some folks here on Psychobabble who can suggest some meds you haven't tried yet. The challenge, more often, is finding a pdoc who's willing to prescribe them!
Why don't you try listing the medications and combos of meds you've tried? Another thing that might be helpful is giving us an idea what sort of symptoms you're trying to treat. Like for example, do you have bipolar disorder? Atypical depression? Panic/anxiety attacks? ADD? That sort of thing. Remember this is a support group and we're not going to make fun of you or anything...we're here to help.
-Crotale
> I have been to countless pdocs over the years and have tried just about every possible pmed and many combinations. My pdoc is basically saying that the only thing left to try is ECT. I have agreed to do it but I am SCARED TO DEATH at the prospect of the memory loss, possible loss of cognitive abilities, and from what others have told me...terrible headaches between treatments.
>
> Has anyone out there got any thing to offer either pro or con involving ECT???
>
> PLEASE HELP!! I AM DESPERATE!
Posted by Zeba on July 4, 2008, at 15:41:38
In reply to Re: ECT...I am scared to death, posted by linkadge on July 4, 2008, at 7:57:43
Agreed. In all my research, and I have published research myself, I have not seen anything to warrant a 70 or 80 percent postive response. I tried to get my ECT doc to consider doing some follow up research, and he was interested sort of and then said no he didn't have time. I said I could do it, and he knows I could, and he thought about it some more and then said no, that even though he considered me a colleage, I was also his patient. So that ended things.
Posted by Crotale on July 4, 2008, at 21:10:55
In reply to Re: ECT...I am scared to death » linkadge, posted by Zeba on July 4, 2008, at 15:41:38
I think the 70-80% response rate is in regular depressed patients. My doc said he thinks it's closer to around 50% in med-refractory depression. Which is still pretty good if you think about it. (I don't know what the rate would be in psychotic depression, schizophrenia/catatonia, mania, etc.)
-Crotale
Posted by BGB on July 5, 2008, at 0:48:17
In reply to Re: ECT response rate, posted by Crotale on July 4, 2008, at 21:10:55
I have heard the 80% figure thrown around, although I can't find any really substantial research now that I have looked for it.
Once my p-doc repeated the 80% figure I just figured it was true....he is a huge hot-shot that's won Doctor of the Year awards, and other accolades for his rTMS clinic. Everyone I encounter (my old p-doc, my psychologist, my neurologist, my GP) has heard of him and seems to think that he is god's gift to mental health, although with each visit I am growing less and less sure of that. I'm certainly not improving, that is for sure, and I have been with him for over six months now. Of course, I know that in psychiatry time that's really only a few minutes. The meds take so damn long to offer any sort of relief, if they do at all.
Posted by linkadge on July 5, 2008, at 9:09:02
In reply to Re: ECT...I am scared to death » linkadge, posted by Zeba on July 4, 2008, at 15:41:38
Thats exactly it. Some of them probably "don't want to know".
I think the 70-80% thing just kind of floats around as a justificiation of sorts for the continued usage of such a risky treatment.
Medical texts and literature aren't alwasy accurate. For instance, for the longest time, SSRI's only caused sexual dysfunction 10% of the time (as quoted on product inserts). In reality, probably more like 3/4 of SSRI users experience some form of sexual dysfunction.
Linkadge
Posted by linkadge on July 5, 2008, at 9:10:19
In reply to Re: ECT response rate, posted by Crotale on July 4, 2008, at 21:10:55
>I think the 70-80% response rate is in regular >depressed patients
How many ECT studies are there on "regular" non-med refractory, depressed patients?
Linkadge
Posted by linkadge on July 5, 2008, at 9:14:51
In reply to Re: ECT response rate, posted by BGB on July 5, 2008, at 0:48:17
Well, think of it this way. The statistic that is commonly used for the incidence of memory loss with ECT is apparently just a random number. Sakiem himself said that the number often quoted for the incidence of memory loss is *not* based on research.
I will look for the article....
So, if the numbers often publicised for the incidence of memory loss are flawed, why is it so inconcievable that those statistics used for the effectiveness are flawed?
Linkadge
Posted by IAMtheWalrus on July 5, 2008, at 13:57:29
In reply to Re: ECT response rate, posted by linkadge on July 5, 2008, at 9:14:51
> Well, think of it this way. The statistic that is commonly used for the incidence of memory loss with ECT is apparently just a random number. Sakiem himself said that the number often quoted for the incidence of memory loss is *not* based on research.
>
> I will look for the article....
>
> So, if the numbers often publicised for the incidence of memory loss are flawed, why is it so inconcievable that those statistics used for the effectiveness are flawed?
>
> LinkadgeSo are you saying suicide is better than some memory loss?
-W
Posted by BGB on July 5, 2008, at 15:59:37
In reply to Re: ECT response rate, posted by linkadge on July 5, 2008, at 9:14:51
> Well, think of it this way. The statistic that is commonly used for the incidence of memory loss with ECT is apparently just a random number. Sakiem himself said that the number often quoted for the incidence of memory loss is *not* based on research.
>
> I will look for the article....
>
> So, if the numbers often publicised for the incidence of memory loss are flawed, why is it so inconcievable that those statistics used for the effectiveness are flawed?
>
> LinkadgeI don't think that it is at all inconceivable that the statistics are flawed. I just wanted to re-iterate that I was told this figure by someone who is very highly respected in the mental health field. I realize that this has nothing to do with research and that he can be just as incorrect as any other human being.
I have also read the article where Harold Sakceim admitted that he just made the 20% figure up (it's available somewhere on the ect.org website, but I wasn't able to locate it quickly). I also realize that he is very well respected in his field, as my doctor is, so my doctor could be just as full of shi* as Sackeim is. As Sackeim is connected with Mecta, my doctor is probably paid very well for each ECT treatment, so I realize that he may also have a financial motivation to inflate the statistic.
I apologize for repeating what I realize now is probably an incorrect statistic. Believe it or not, I honestly was not trying to act in a malicious way when I did. However, I can tell you that I am glad ECT is still there for me as a last resort. I know people who have done very well with it, as well as people who have had horrible experiences.
Posted by Zeba on July 5, 2008, at 16:46:42
In reply to Re: ECT response rate, posted by linkadge on July 5, 2008, at 9:14:51
Lindage,
I remember reading that he said that the numbers for memory loss were just sort of made up. Actually, I think there is a tape of him saying that on U-tube.
Zeba
Posted by Zeba on July 5, 2008, at 16:50:19
In reply to Re: ECT response rate » linkadge, posted by IAMtheWalrus on July 5, 2008, at 13:57:29
I think it depends on the person. Some people might rather be dead than have severe memory loss. Others might rather have memory impairment. One person I know who had over 100 ECT treatments had to have rehabilitation just to learn how to brush his teeth, use a fork and spoon, etc. And, he will never be 100%. That in and of itself would make me feel more depressed and suicidal, not less so.
Zeba
Posted by Zeba on July 5, 2008, at 16:54:27
In reply to Re: ECT response rate, posted by BGB on July 5, 2008, at 15:59:37
Yes; my pdoc was/is well respected in the field and has published a lot and done other things that make him an expert. I don't want to go into detail as I am not interested in promoting him or revealing too much here. I trusted him with my life which was a huge mistake. In the end he got pissed off at me because I was so upset with the memory problems from the ECT. He was my therapist too for two years. I knew I had to find someone else at that point, and I did.
Posted by linkadge on July 5, 2008, at 17:10:12
In reply to Re: ECT response rate » linkadge, posted by IAMtheWalrus on July 5, 2008, at 13:57:29
>So are you saying suicide is better than some memory loss?
Well for starters, people probably need to rethink the notion that ECT is their "last option". Nextly, show me studies that proves that ECT does infact actually reduce the rate of suicide.
For some patients (Hemmingway is a prime example) the failure of ECT coupled with the the prospect of permanant brain damage is infact what prompts suicide.
Nevertheless, if ECT works for you and you are comfortable with the risk then go for it.
I would just be more satisifed if somebody stepped up to the plate to initiate sound research that enables patients to make a more realistic and accuate appraisal of the benifits and risks. That research is long due.
Linkadge
Posted by linkadge on July 5, 2008, at 17:26:19
In reply to Re: ECT response rate » BGB, posted by Zeba on July 5, 2008, at 16:54:27
Yes, if the procedure works then perhaps the memory loss is justified.
Some things in mind however.
a) the treatment may not work but still cause significant memory impairment. Then you're just as depressed (or more - and less functional). Damage to the brain struture may also make one more treatment resistant. You could win a battle but loose the war.
b) the treatment may only *initially* work yet memory impairment is pervasive and long lasting.
c) It may work well the first time, yet not work well the next. Change the electrode placement by a millimetre and the electricity might travel a different neural pathway. The procedure can be very unpredictable. So its not *necessarily* like "well it worked for me in the past, so I can rely on it in the future".
Linkadge
Posted by IAMtheWalrus on July 5, 2008, at 18:16:57
In reply to Re: ECT response rate, posted by linkadge on July 5, 2008, at 17:10:12
> >So are you saying suicide is better than some memory loss?
>
> Well for starters, people probably need to rethink the notion that ECT is their "last option". Nextly, show me studies that proves that ECT does infact actually reduce the rate of suicide.
>
> For some patients (Hemmingway is a prime example) the failure of ECT coupled with the the prospect of permanant brain damage is infact what prompts suicide.
>
> Nevertheless, if ECT works for you and you are comfortable with the risk then go for it.
>
> I would just be more satisifed if somebody stepped up to the plate to initiate sound research that enables patients to make a more realistic and accuate appraisal of the benifits and risks. That research is long due.
>
>
> Linkadge
>
>
> Good answer..I agree with what you said here.-W
>
>
Posted by BGB on July 5, 2008, at 18:31:12
In reply to Re: ECT response rate, posted by linkadge on July 5, 2008, at 17:10:12
> For some patients (Hemmingway is a prime example) the failure of ECT coupled with the the prospect of permanant brain damage is infact what prompts suicide.
I would have to respectably disagree with you, as far as using Hemingway as an example. Far too little is known about his physical condition at his time of death to make assumptions about his diagnosis of depression, OCD, or bipolar disorder. It has been documented that Hemingway's ECT may have failed because his depression was a result of hematomachrosis, a genetic disease which results in increased iron levels in the blood, which can cause severe and debilitating depression. Bloodletting is the only treatment for hematomachrosis, even to this day. ECT has never been advocated as a treatment for hematomachrosis. Hemingway was most likely treated for his symptom, depression, rather than his true illness as it was unknown to his physicians at the time. While no autopsy was done at his time of death due to his family's request, the disease is genetic and runs rampant in his family. It is extremely likely (although not confirmed) that he had the disease, which would explain why his ECT treatments failed. Hemingway's father, who also committed suicide, had the disease, and it is known to be passed down paternally.Heart disease is also known to cause depressive symptoms, and it is documented that Hemingway had high blood pressure, extremely high cholesterol levels, and severe aortal inflammation.
Hemingway also survived not one but TWO plane crashes, causing trauma to his head and crushing his vertebrae, among other very serious injuries. His head injuries were so severe that he lost his vision and hearing on his left side for a period of time. Hemingway's injuries were so extensive that many American newspapers jumped the gun and actually published his obituary. Such severe trauma to the brain could not only explain his depression, it could also explain his memory loss during ECT. Patients with severe head trauma are known to experience greater memory loss with ECT than typical patients.
Additionally, it is known that Hemingway was a very heavy drinker his entire life, and became a raging alcoholic in his final years. Not only can alcoholism cause depression, but heavy drinking is contraindicated with ECT treatment. This could have played a HUGE role in his memory loss.
Furthermore, it is well accepted by physicians that memory loss often reverses itself in the days and weeks after ECT in many patients. Hemingway killed himself only a few days after his last ECT treatment. There is a possibility that his memory would have come back to him in time, at least partially.
Hemingway is used constantly as a reference by ECT critics, but we know far, far too little about him and his condition to judge ECT by his opinion. There are far too many extenuating circumstances to proclaim that ECT caused Hemingway's death, especially when you consider that his father, two of his siblings, and his granddaughter all took their own life.
While I acknowledge that Hemingway himself blamed his ECT on his suicide, he was far too sick at the time to be able to make clear and well-thought-out statements. I'm sure that he did feel as though ECT killed him, but that simply does not make it fact, especially when you consider the plethora of severe illnesses and injuries he had shortly before the time of his death.
Oh, and an interesting bit of Hemingway trivia for anyone who is interested--Hemingway purchased the shotgun that he used to kill himself at Abercrombie and Fitch!
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