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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 15 to 39 of 39. Go back in thread:
Posted by Racer on June 2, 2008, at 21:00:55
In reply to Re: Thank you for your input » Racer, posted by Crotale on June 2, 2008, at 18:15:47
> \> It's funny -- I really do know people who swear it gave them their lives back. And I've known people who swear it ruined their lives.
>
>
> I wonder if some of the side effects people report might result from the anaesthesia rather than the ECT itself.
>
> CrotaleThat's a great point. I'm trying to remember -- but I think the biggest ECT booster had it done in 2005, and most others earlier...
Honestly, though, I've attributed some of the face to face accounts of "ruined" lives to the underlying disorder. Those I've known both before and after were people who always struck me as suffering from something beyond depression. I hate saying that, but I truly believed them to be unlikely to benefit, because none of them were willing to examine whether there was anything at all in their behavior which might contribute to their condition. That's not the Bootstrap argument, by the way. I absolutely believe that depression is biological. I also believe that, as a result of depression, many of us learn behaviors which don't do us any good -- and that the best outcome results from exploring whether there are behavioral treatments which might augment either ADs or ECT/TMS/etc. (And when I say "behavioral treatment," I don't mean CBT per se. I only mean treatments other than the medical. Therapy of various sorts, exercise, changing careers, whatever it might be...)
(Man, I hope that makes sense and doesn't leave anyone feeling offended. If you do feel offended, please understand that I'm extrapolating from my own experience -- I *know* that no drug alone will fix my problem, because there are psychological issues that have resulted from the trauma, anxiety, and depression. As well as finding an effective biological treatment, I know that I have to work on those issues.)
Thanks for the comment -- it does bring up a very interesting point. Be interesting to see a study, huh?
Posted by Zeba on June 2, 2008, at 22:55:00
In reply to ECT report » Racer, posted by Crotale on June 1, 2008, at 13:16:51
I will just say that I did not notice memory problems with my ECT either until after I stopped. I am not sure why that was, but I thought I had no problems other than some body aches after the first treatment and a feeling like I could not breathe after, I think, the third treatment. I had unilateral as well. How many treatments are you having? I was supposed to have 6 to 12 and quit after #7. A different ECT doc did the treatment and did a seizure three times as long as my ECT doc who said this could have been the cause of my problems. My ECT doc agreed I should stop at that point as I was really feeling messed up a couple of days after #7. I was getting the ECT twice per week per my request rather than the typical three times per week. My ECT doc actually agreed that would likely be best.
I would suggest that you check for disorientation and other right brain sorts of things after around one week after you stop the ECT. If you do maintenance ECT, you may not notice for some time. I know someone who was gung ho about ECT and was getting maintenance ECT and thought she had very little memory problems while getting ECT. Turns out that she does, and now she is devastated.
Posted by Zeba on June 2, 2008, at 23:07:57
In reply to Re: ECT report, posted by bleauberry on June 1, 2008, at 19:45:45
Exactly right about the research, and as I said in a previous post, one does not always recognize the problems whilst in the midst of getting ECT. I tried to get my ECT doc to do some follow-up research with patients who had had ECT, and he seemed interested at first and then said he really did not have time. I don't think he wanted to find out that lots of people have memory problems after ECT, and some of it persists indefinitely and sometimes never improves.
I am seeing a neurologist tomorrow and then doing neuropsych testing after. My new pdoc thinks I am having seizures from what I describe (he's anti ECT). He agrees that my memory seems to suck big time now, at least my short-term memory. My husband notices it too. The only good thing about that is that I don't remember movies I saw in the past five years or so, and so it is like seeing a movie for the first time. I watched Clear and Present Danger the other night. I know I saw it in the past, but it was like seeing it for the first time. This is the okay part, but forgetting what I learned in school is not so okay. Some of that has come back, but very slowly. And I still have trouble finding my way from point A to point B even if I did it a million times in the past.
My ECT doc has done some pretty scary things with ECT like give daily bilateral ECT at 100% charge to someone who was highly aggressive. The person got 70 ECT treatments. So the guy is no longer aggressive. I wonder what he is like.
My ECT doc wanted to do bilateral 100% with me too but knew I would never agree and had concerns about how damaged I would be. He said I had cognitive reserve to handle any damage before I got the ECT. What he meant was that I had a very high IQ and could afford to give up 10 or 15 or 20 IQ points and still be able to do my job. He told me this after I quit the ECT. I thought I would throw up at the prospect of what he really wanted to do.
Posted by Zeba on June 2, 2008, at 23:19:22
In reply to Wow! Excellent point » Crotale, posted by Racer on June 2, 2008, at 21:00:55
I did a lot of research before getting ECT and even knew from Sackheim's study in 2007 that he found on 6 month follow up that people continued to show deficits after ECT. He had not thought this was so in the past. He found this even though some of his test measures were not the best.
Most ECT docs do ECT with people who are depressed and do not have underlying issues such as a personality disorder. They might have anxiety or something like that.
or myself, I changed my pdoc who pushed ECT from day one. I tried all sorts of antidepressants, but we never really stayed with any one of them for very long as he had his mind set on ECT which I finally did even though I was going to work every day and was not suicidal. He was doing therapy with me as well but would get angry when I would say I was feeling worse. Then, he would talk about ECT and pushed and pushed the issue.
Since quitting ECT, I now take Parnate, 40 mg. per day, and I am also seeing a therapist/analyst three times per week. To some extent I have PTSD from the ECT and from how my last doctor treated me. So, this stirred about other stuff too. I am actually doing much better now, given the therapy and not the ECT which still causes me some memory and disorientation problems over a year later. I don't know what ther experience is of others, but I have not been aware of people having long standing personality issues in addition to the depression, the people who have gotten ECT. Unfortunately, it is sometimes given to people with depression and trauma history and/or eating disorders, and it typically results in a re-traumatization. There is some research to back this up if you are interested.
Posted by linkadge on June 3, 2008, at 7:32:37
In reply to Re: Wow! Excellent point » Racer, posted by Zeba on June 2, 2008, at 23:19:22
There is a severe lack of long term data on people who have ECT. There have been a few studies more recently that are not too promising. The one study by Sakiem found that something like %70 of the responders relasped within one year.
The cognative side effects are real, there is no purpose of trying to play them down. The real issue in the varience of responce, IMHO, is simply the nature of ECT.
There are animal models of ECT induced brain damage. Infact some researchers were looking into pharmacological agents which might help reduce excitotoxicity during ECT. There are two problems with that. 1) Such drugs seem to reduce the effectiveness of ECT 2) You have to actually admit that ECT can cause brain damamge before you endorse agents to prevent it.
The conscenssus seems to be some sort of excitotoxic mechanism. It is evident in animal models of ECT. Even if you don't complain about memory loss, there are cumulative cellular effects of ECT.
Why some people don't complain of cognative impariment?
Possibilities include:
1) denial
2) lost memory but unaware of it
3) asked about memory loss too early
4) individual variences in antioxidant or cellular resiliance
5) Location and sevarity of excitationLinkadge
Posted by Zeba on June 3, 2008, at 23:15:59
In reply to Re: Wow! Excellent point, posted by linkadge on June 3, 2008, at 7:32:37
I completely agree with you. Very good points. I did not realize the memory problems until after I stopped, for example. I must have at least 100 studies, most of which are from outside the U.S. I also have some studies my ECT doc did with ECT and unusual cases. My husband did not want me to do the ECT and said to me why don't you just let someone take a sledge hammer and hit you over the head. It was a very difficult time, and I spend two weeks in the hospital for the first 5 treatments and was not aware of the memory problems. I can remember even saying that I had no memory problems. I journaled daily, but somehow do not remember washing my clothes in the washing machine on the unit, and it ripped up my underwear. So obviously I was just not aware of the memory problems.
Posted by linkadge on June 4, 2008, at 9:05:06
In reply to Re: Wow! Excellent point » linkadge, posted by Zeba on June 3, 2008, at 23:15:59
There was a big controversy about how data was collected about memory loss. Supposedly the majority of the (old) data was collected by asking the patient themselves about memory loss while the still in the hospital.
This is dumb because
a) it is very difficult for the patient to determine memory loss so soon after the ECT. The parts of their brain that are even capable of such a reflective task are probably not even functioning.
b) The sudden improvement in mood may mask such a task too. The rapid improvement in mood may leave the patient with an inacurate confidence of memory.
c) The ECT may improve and worsen memory. ECT may temprorarily lift the depression which will likely improve memory in itself, yet damamge the brain at the same time. In this way there is an initial precetion of no memory loss (or memory improvement) yet it is actually worsened. I.e. when the next depression rolls around the patient is worse off (back in depression with a worse brain structure).
d) There are things the patient may never realize are gone. If you wipe out a memory and its associated connections then certain memories are gone for good. Sometimes family members are more likely to notice the patient's poor memory. My mother would never admit that years of psychiatric drugs have worsened her memory but it is clear to the rest of the family.
e) Sometimes the brain is overconfident. Many brain experiments have shown that the brain is very quick to excuse its mistakes. Split brain operations are a good example of this. The left brain has a very hard time admitting that there is anything wrong aftr traumatic brain injury (perhaps a coping mechanism). The left brain is good at piecing together and excusing inconsistencies in behavior and thought. For instance, a patient may have a massive stroke that affects the right portion of the brain (so much so that behavioral manifestations are obvious) yet claim there is absolutely nothing wrong and that he is fine.
So now they do unilateral on the right hemisphere. Is this really causeing less brain damage or just less brain damage that the left brain (and ultimately the portion of the brain that answers the questions) will *admit* to?
Sure you may still be able to speak and may never admit there is anything wrong, but you may loose certain preceptions and abilities for which you will never fully recover.
Linkadge
Posted by Zeba on June 4, 2008, at 22:29:26
In reply to Re: Wow! Excellent point, posted by linkadge on June 4, 2008, at 9:05:06
Linkage
That is exactly what happened to me with the Right Unilateral. My orientation is messed up royally. I used to be able to find my way around and was great with directions. Now I just suck at it and easily get lost. I have a GPS now but also carry a detailed county map of my county and the surrounding counties. I also can't sing worth crap anymore--another right brain task. I am a "big picture" person so to speak, and that is right brain as well. That is messed up too. But so are some more or less left brain things. After all the seizure is over the whole brain. I was always good in math too and was in advanced placement math, etc. and a statistics whiz and why I could analyze the research with a critical eye. Now my math sucks too--another right brain activity. Most things are mixed brain, however, and this is why I believe my working memory is damaged as well. I am seeing a neurologist tomorrow as the thinking is I now have a seizure disorder as well, and then I will go for the neuropsych testing too. That should be more telling than the neurology exam and any medical tests.
Posted by chiron on June 5, 2008, at 1:13:31
In reply to Same Depression Program As Above ECT Works 80%, posted by Phillipa on May 31, 2008, at 11:55:14
I've heard the 80% many times. I tend to believe it, and of course it is reflecting a short term response (which the medical community readily admits). It is usually only used for extreme cases that need a quick response.
It was a miracle for me. Pulled me out of a deep hole a couple of times, and quickly. Somehow the seizures "rebooted/balanced" my brain out. I wish I could always feel that good (maintenance wasn't too effective for me based on the pros/cons).
I've only heard of positive personal stories. A nurse that takes a 2hr drive once a month for maintenance, a woman that had a bad reaction to a med & it saved her from suicide, and a few people I witnessed in the hospital that turned around.
I had a few memory probs - but completely worth it. Sometimes just took some Advil & went to work the same day.
And I'm still as freakin smart as I was :) Continuing to move up in my Information Systems career.
Posted by blueboy on June 5, 2008, at 8:30:43
In reply to Same Depression Program As Above ECT Works 80%, posted by Phillipa on May 31, 2008, at 11:55:14
The research I saw said something just under 50%, I think.
Posted by linkadge on June 5, 2008, at 9:41:02
In reply to Re: Wow! Excellent point » linkadge, posted by Zeba on June 4, 2008, at 22:29:26
ECT may actually precipitate a long term seizure disorders unfortunately.
Linkadge
Posted by linkadge on June 5, 2008, at 9:58:13
In reply to Re: Same Depression Program As Above ECT Works 80%, posted by chiron on June 5, 2008, at 1:13:31
>I've heard the 80% many times. I tend to believe >it, and of course it is reflecting a short term >response (which the medical community readily >admits).
I personally don't believe it. The 80% statistic is kind of a myth that just gets carried on by word of mouth. If you look deeper into actual studies this rate is not consistent. Some studies do not include patients who have failed more than a few antidepressant trials (those who are known to fair more poorly with ECT). The sucess rate is also based on flawed measures. You could give somebody cocaine and it would look like a great antidepressant if you measure mood at the right time. Some people lapse very quickly (ie within days of leaving the hospital), yet they are still classified as responders. Relief from depression needs more than a quick brain damaging boost.
>It was a miracle for me. Pulled me out of a deep >hole a couple of times, and quickly. Somehow the >seizures "rebooted/balanced" my brain out.I'm not here to discount your sucess, but just because it works one time doesn't mean it will work (as cleanly) the next.
>I've only heard of positive personal stories.
I wish I could say the same. You're saying you havn't read the above posts?
>And I'm still as freakin smart as I was :) >Continuing to move up in my Information Systems >career.
I wish you the best of sucess, but you may not be as lucky the next time around.
There was an old page called remidyfind.com which had scores of unbiased online patient reviews of ECT. The majority of patients said their experience was not favorable and they would not do it again. I think the page may have changed to revolution health, but I don't know if they have the same ratings available.
Linkadge
Posted by linkadge on June 5, 2008, at 10:21:43
In reply to Re: Same Depression Program As Above ECT Works 80%, posted by blueboy on June 5, 2008, at 8:30:43
A good portion of the ECT studies were performed by Sackeim who practically owns the company that makes these ECT machienes. He denied this associated on a few occasions.
Many of the statistics on memory loss were not based on sound scientific procedures. There are some newer studies examing this relationship which don't look too appealing.
According to:
http://www.healthyplace.com/Communities/Depression/ect/effects.asp
Harold Sackeim admits the famous 1 in 200 (1 in 200 persons receiving ECT gets memory loss) is not based in science. Despite the fact that this number was pulled out of a hat, it is the most commonly quoted "statistic" about memory loss.
It is even quoted in many ECT consent forms.
Here is a good article about ECT and memory loss. It is based on some of the few studies available which directly assess learning and memory abilities and the effects of unilateral/bilateral ECT.
http://www.healthyplace.com/Communities/Depression/ect/effects/squire/squire.asp
Linkadge
Posted by Zeba on June 5, 2008, at 21:19:00
In reply to Re: Wow! Excellent point, posted by linkadge on June 5, 2008, at 9:41:02
linkadge
yes you are right about long term seizure. I saw a neurologist today, and she thinks I have a seizure disorder. We are going to start out with an MRI and work from there. She also wants me to get neuropsych testing, and it may be two months before I can get in to this person. So, that is where things stand right now. Neither of us think the MRI is going to show anything. She agrees with me that any damage may be very deep and not likely to show up even on an MRI.
Posted by Zeba on June 5, 2008, at 21:21:53
In reply to Re: Same Depression Program As Above ECT Works 80%, posted by chiron on June 5, 2008, at 1:13:31
Did you know that in the research that some of the top names with ECT say the good feeling after ECT is actually due to brain damage?
Posted by Zeba on June 5, 2008, at 21:27:05
In reply to Re: Same Depression Program As Above ECT Works 80%, posted by linkadge on June 5, 2008, at 10:21:43
Did you see Sackheim's January 2007 study where he actually did follow-up research with testing (not best measures, but...), and he found that 6 months post ECT that folks actually do continue to have memory problems and other issues after ECT. Apparently he did not expect to find this, but he did!!! Especially if you are older, female, and more or less average intelligence or lower, than you are more susceptible to developing serious memory problems and especially is Bilateral ECT is done. Unilateral also shows problems but somewhat less than bilateral. Remember the seizure is over the whole brain.
Posted by linkadge on June 6, 2008, at 11:28:59
In reply to Re: Same Depression Program As Above ECT Works 80% » linkadge, posted by Zeba on June 5, 2008, at 21:27:05
>Did you see Sackheim's January 2007 study where >he actually did follow-up research with testing
>(not best measures, but...), and he found that 6 >months post ECT that folks actually do continue >to have memory problems and other issues after >ECT. Apparently he did not expect to find this, >but he did!!! Especially if you are older, >female, and more or less average intelligence or >lower, than you are more susceptible to >developing serious memory problems and >especially is Bilateral ECT is done. Unilateral >also shows problems but somewhat less than >bilateral. Remember the seizure is over the >whole brain.Yes I did read this and it is disturbing. You can probably take his results and times them by 5 to get the true results. Thats the problems is that there is such a sparsity of quality research on the memory loss. I don't think that there has really been the incentive. Those who have the money and the authority to initialte that kind of research probably don't want to know the results.
People with higher IQ probably don't sustain any less brain damamge, its more likely that they have more connections to rely on when some are damaged.
Linkadge
Posted by Zeba on June 6, 2008, at 19:46:50
In reply to Re: Same Depression Program As Above ECT Works 80%, posted by linkadge on June 6, 2008, at 11:28:59
**People with higher IQ probably don't sustain any less brain damamge, its more likely that they have more connections to rely on when some are damaged**
So true; I had been tested in the past and found to have very superior intelligence. My ECt doc even said I probably lost 10 to 20 points in IQ, but since I had cognitive reserve, I should be okay. I cry every time I think about this. I care that my IQ has dropped that much after only 7 unilateral ECT treatments. It sucks big time.
Posted by Zyprexa on June 7, 2008, at 20:17:21
In reply to Re: ECT report, posted by bleauberry on June 1, 2008, at 19:45:45
10 years later and still don't know everything that happened. Am starting to get back some memories. Some of them a reminders from people who knew me and then it comes back. There is still a lot I don't remember. Don't suggest this aproach to any one.
When I got out of one of the last ECT's I had. I woke up and didn't remember anything. I could not concive what I was looking at in the room, it was like I had just been born. And that is what I thought at the time untill I looked at my legs and saw how big they were. Then I thought that I was in an alien world, what was going on. So I went back to sleep. I don't remember any thing after that for a while. But later on when the hospital stay was over. My memory was so impaired that I could not think and people were talking to me and I didn't understand how to answer....................
Posted by Phillipa on June 7, 2008, at 20:48:15
In reply to Re: ECT report - I had the same problem, posted by Zyprexa on June 7, 2008, at 20:17:21
What hospital did you have it at? Can google or e-mail if don't want to publicly disclose. Phillipa
Posted by Zeba on June 8, 2008, at 17:14:36
In reply to Re: ECT report - I had the same problem » Zyprexa, posted by Phillipa on June 7, 2008, at 20:48:15
Oh crap; I have known I have cognitive deficits I did not have before ECT. Now it is official. I have been diagnosed with memory deficits with further tests to determine how much and what can be done in terms of rehabilitation.
I will never doubt it again. ECT causes brain damage, and to what extent, one must get testing done in order to know. Why would neurologists try to help people with epilepsy so they don't have seizures if it is not a problem to have a seizure. To deliberately induce grand mal seizures is going to cause deficits.
I thought I would be glad to have confirmed what I already knew, but it just makes me feel like I want to cry.
Posted by linkadge on June 9, 2008, at 17:11:24
In reply to Re: ECT and confirmed cognitive deficits, posted by Zeba on June 8, 2008, at 17:14:36
Another thing to consider is that many of the same forms of cognitive deficits are present in individuals who have epilepsy.
Poorly controlled epilepsy is associated with hippocapal volume loss as well as a host of cognitive problems.
Doctors harp on about how wonderful is the fact that ECT raises BDNF. They consider it to be part of the theraputic effect.
Not all researchers agree. BDNF is both a trophic and protective brain chemical. It is released in high quantities during times that the brain is under a precived stress.
For instance, BDNF increases after traumatic brain injury. It is an attempt for the brain to protect itself from what is occuring. Its the same with ECT. The brain precieves that it is being insulted and releases BDNF to protect itself.
GFAP is another protein that is increased by ECT and is generally a sign of neuronal insult.
Linkadge
Posted by Zeba on June 9, 2008, at 20:37:40
In reply to Re: ECT and confirmed cognitive deficits, posted by linkadge on June 9, 2008, at 17:11:24
Could you explain what is BDNF and GFAP. What do the letters stand for, and just what do these proteins do normally that they would increase secretion during ECT? Thanks.
Posted by deniseuk190466 on June 15, 2008, at 7:35:51
In reply to ECT report » Racer, posted by Crotale on June 1, 2008, at 13:16:51
Hi Crotale,
Everytime I ask my Psychiatrists about ECT they just sort of shake their heads and say that it's not indicated for my depression. This is because I'm not bedridden, am still able to work etc and I also have a lot of anxiety, tension and agitation.
Were you completely cotomose before having ECT, I mean were you unable to eat or sleep?
Also how did you react to Nardil and to Cymbalta?
Thanks....Denise
Thanks....Denise
Posted by Crotale on June 17, 2008, at 20:11:54
In reply to To Crotale, posted by deniseuk190466 on June 15, 2008, at 7:35:51
Hi Denise. Sorry it took me a while to get back to you. I haven't been online much in the last couple weeks.
> Everytime I ask my Psychiatrists about ECT they just sort of shake their heads and say that it's not indicated for my depression. This is because I'm not bedridden, am still able to work etc and I also have a lot of anxiety, tension and agitation.
Well, I'm not bedridden. Do you perhaps have what's sometimes called "atypical" depression? (symptoms include eating and sleeping a lot, anxiety, and hypersensitivity) ECT isn't supposed to work very well for that. I also gather it's not really indicated for bipolar disorder.
> Were you completely cotomose before having ECT, I mean were you unable to eat or sleep?
No, although I've certainly been eating and sleeping better lately. From what I gather, outpatient ECT is done pretty commonly here. It's going quite well for me, BTW; it seems to be helping, and I haven't had any problems with memory (well, except obviously that I can't remember any of the times when I was under general anaesthesia!). I've just gotten to the point where we're starting to spread the treatments out a bit further (I was having 2 a week, now I'm going down to 1 a week -- I had, I believe, my 12th treatment on Monday).
> Also how did you react to Nardil and to Cymbalta?
Nardil seemed to work at first but then it pooped out and I got a lot more depressed. It was pretty bad. I had some kind of bad reaction to Cymbalta, I don't know exactly what caused it, but I had a high fever and my blood pressure was all over the place and stuff like that, and I was kind of delirious. We all respond to these treatments differently...each of our brains is unique. I know people who had great results with one of these two medications. Anyway, so I don't tell people those are bad medications just because I had bad experiences. You know?
This is the end of the thread.
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