![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 32. This is the beginning of the thread.
Posted by blueberry on September 15, 2006, at 18:00:19
It looks like ECT for me, starting in less than 2 weeks. Reasons cited by two second opinions were: poor medication responses; paradoxical medication responses; short transient responses; intolerable medication side effects; suicidal tendencies; and of course a severe prolonged depression. Medications are likely still in my future, but they feel ECT is necessary to arrest the current bout. The hope is that if it works meds can be discontinued completely and just do ECT once a month or so as followup.
It will be bilateral so I'm expecting some massive confusion and some memory loss. If that is the trade I have to make, it's ok with me. It's better than being suicidal, and it's better than the bucket full of incapacitating side effects I get from medications.
Anyway, I'm doing lots of internet research to see what's coming. Depending on whether you read something from an advocate or a critic you get totally different stories.
The cool thing is that the hospital has an ECT coordinator who can put me in touch with people who have done ECT so I can get real live accounts. I've talked to one already and she said it was a lifesaver, a marriage saver, and her recovery would not have happened without it.
Posted by adamCanada on September 15, 2006, at 18:26:17
In reply to Looks like ECT, posted by blueberry on September 15, 2006, at 18:00:19
yeah they put you in touch with ppl who done well on ect but they wont show you people like me. ECT RUINED my memory. 5 years later and I still feel like a ------- idiot. I cant remember what happened the day before and I forget things all the time. ECT was one of the biggest mistakes I ever did and I will always regret it. Try more meds or try meds that are in a catagory you never tried unless you feel it really is hopeless
Posted by Declan on September 15, 2006, at 18:30:55
In reply to Re: Looks like ECT, posted by adamCanada on September 15, 2006, at 18:26:17
There's an interestingly wide divergence of opinion on ECT.
Anyone know why?
Posted by blueberry on September 15, 2006, at 18:35:47
In reply to Re: Looks like ECT, posted by adamCanada on September 15, 2006, at 18:26:17
So sorry to hear your story. I am highly aware how mileage varies with all treatments.
You are alive. I am coming too close to not being that way.
There is a short list of meds I would like to try. The problem is that the last 6 or so I have tried actually made me worse, a lot worse, and fast. So yeah, there is a considerable amount of hopelessness. And a great deal of fear in popping a new pill when I'm already about to fall off the edge and every med I've tried in 2005 and 2006 has pushed me closer to that edge.
> yeah they put you in touch with ppl who done well on ect but they wont show you people like me. ECT RUINED my memory. 5 years later and I still feel like a ------- idiot. I cant remember what happened the day before and I forget things all the time. ECT was one of the biggest mistakes I ever did and I will always regret it. Try more meds or try meds that are in a catagory you never tried unless you feel it really is hopeless
Posted by SLS on September 15, 2006, at 18:40:26
In reply to Looks like ECT, posted by blueberry on September 15, 2006, at 18:00:19
> It looks like ECT for me, starting in less than 2 weeks.
I wish for you the best.
I went the bilateral route. I did feel kind of weird and easily confused for awhile, but I didn't suffer any memory impairment. I went the bilateral route. I wish for you the best.
Just joking.
The weird feeling lasted a few weeks after the end of treatmensts.
Ask them about drinking regular coffee before the treatments.
Good luck.
- Scott
Posted by willyee on September 15, 2006, at 18:51:32
In reply to Re: Looks like ECT » blueberry, posted by SLS on September 15, 2006, at 18:40:26
> > It looks like ECT for me, starting in less than 2 weeks.
>
> I wish for you the best.
>
> I went the bilateral route. I did feel kind of weird and easily confused for awhile, but I didn't suffer any memory impairment. I went the bilateral route. I wish for you the best.
>
> Just joking.
>
> The weird feeling lasted a few weeks after the end of treatmensts.
>
> Ask them about drinking regular coffee before the treatments.
>
> Good luck.
>
>
> - ScottScott you had ECT??
Posted by Pfinstegg on September 15, 2006, at 20:31:10
In reply to Looks like ECT, posted by blueberry on September 15, 2006, at 18:00:19
I can't remember- have you had a trial of rTMS?
Also, why bilateral from the start? I think unilateral usually is associated with less memory problems. Couldn't you start with that?Anyway, i do hope you find something that really helps, as I know your depression is very severe, and that you have tried everything you possibly could to improve it.
Posted by iforgotmypassword on September 15, 2006, at 20:49:39
In reply to Looks like ECT, posted by blueberry on September 15, 2006, at 18:00:19
documented as seeming to be just as efficacious as bitemporal.
and with minimal memory cognition ruining even compared to unilateral in one good study.
Posted by Phillipa on September 15, 2006, at 21:13:13
In reply to ASK FOR BIFRONTAL?, posted by iforgotmypassword on September 15, 2006, at 20:49:39
Good luck Blueberry I know you'll do your homework. Love Phillipa
Posted by linkadge on September 15, 2006, at 21:29:20
In reply to Re: Looks like ECT » adamCanada, posted by blueberry on September 15, 2006, at 18:35:47
>I have tried actually made me worse, a lot >worse, and fast
Don't tack permanant on to that list. I know this is a page of support, but I have to risk being banned by saying don't do it. For goodness sakes try an MAOI first. Why wouldn't you? There is a good shot it could help, and even if not the effects would not be permanant.
SSRI's are like water to MAOI's. Parante can work very quickly, as in the first dose you can see improvement.
How can you be worred about SJW causing glutamate neurotoxicity and not be worried about ECT doing the same thing 100x more. Especially when you've got people researching agents to try and protect against ECT induced neurotoxicity.
Just don't do it. My uncle was about to be electroshocked when he went for a second opinion.
The second doctor said that there is big controversy even between doctors about the safety and efficacy of the treatment.Some doctors are dead against it. It would be unethical for a doctor to refuse a MAOI trial and give ECT first. I would question any doctor who refusted an MAOI trial in favor of ECT.
I've said my bit.Linkadge
Posted by iforgotmypassword on September 15, 2006, at 21:48:17
In reply to Re: Looks like ECT, posted by linkadge on September 15, 2006, at 21:29:20
i sort of agree. if i was offered ECT i would take it. i don't know how i screwed it up, i was going to have it done during an admission a year ago.
i am a parnate non-responder.
an maoi may be worth trying... as they can be fast acting apparently as linkadge says, but some people need monstrous dosages, and well, maybe i was one of them, but that whole plan stagnated with my doctor, and we're back to apathy central over a life not worth living.
have you tried an effexor+remeron combination, they are supposed to be extremely powerful together.
i guess its all about if your life now and for the last years is even worth coming back to. i don't imagine you would lose years, or even multiple months. (my guess not fro experience.) but at least in my case, if i could function like a normal human being, i wouldn't care if the last 8 years were erased. not to belittle others' grievances though...
Posted by SLS on September 16, 2006, at 3:09:07
In reply to Re: Looks like ECT, posted by willyee on September 15, 2006, at 18:51:32
Hi Will.
> Scott you had ECT??
Yes. I had 6 unilateral left followed by 9 bilateral for a total of 15 treatments. 3 x week. 5 weeks. Wow. 5 weeks. It didn't seem that long at the time.
I actually experienced a transient improvement after the fifth treatment that lasted for a few hours. My brain is just so damned stubborn.
- Scott
Posted by linkadge on September 16, 2006, at 7:52:19
In reply to Re: Looks like ECT, posted by SLS on September 16, 2006, at 3:09:07
Have you given TCA's a fair trial? You can't have ECT if you havn't tried a TCA. They are completely different than SSRI's.
Linkadge
Posted by linkadge on September 16, 2006, at 7:52:51
In reply to Re: Have you tried TCA's?, posted by linkadge on September 16, 2006, at 7:52:19
Posted by blueberry on September 16, 2006, at 8:51:05
In reply to What all meds have you tried ? (nm), posted by linkadge on September 16, 2006, at 7:52:51
paxil
zoloft
prozac
serzone
remeron
effexor
cymbalta
moclobemide
milnacipran
nortriptyline
desipramine
buspar
pindolol
modafinil
adrafinil
adderall
ritalin
seroquel
zyprexa
amisulpride
xanax
klonopin
lorazepam
depakote
lamictal
lithium
st johns wort
rhodiola rosea
ginkgo biloba
fish oil
5htp
dl-phenylalanine
l-phenylalanine
d-phenylalanine
tyrosineI'm tired of being a chemistry lab.
Even when something works, the relapse rate is 100%.
Most of the above things resulted in a worsening of depression. A small few of them resulted in improvements that were brief. All of them interfered with the ability to work and function. All of them came with intense side effects that were at least as crippling as the depression itself.
The best of all was prozac+st johns wort+zyprexa, but it pooped out in 2 months.
I am aware that the 70% to 80% of people who did well with ECT are not hanging out at pbabble, so this thread is a bit skewed to the negative side. We don't hear at all from the 80% who did well because they are out living life.
Hopefully ECT will work...and since my depression is extreme in the morning and not bad at all in the evening I have a hunch it is of a stress hormonal cyclical nature that responds well to ECT. Also, clinical studies show that people who had depressions as a result of ecstacy use (damaged serotonin synapses) that were unresponsive to ssri's and snri's got well with ECT. I never did ecstacy, but I have had short periods of cocaine, PCP, mescaline, amphetamine, long periods of marijuana, and not to mention all the psychiatric drugs mentioned above...who knows what long term damage or modifications they do to synapses and such. Of course, I am aware I could say the same about ECT.
There is still room for me to have second thoughts and back out. But really, how many more years of trials does one need before exploring something else that has a good possibility of helping.
Bottom line...we're talking suicidal depression here. I have had not one but two second opinions. All seem to agree this is not the time to keep messing around with meds.
Posted by SLS on September 16, 2006, at 9:15:28
In reply to Re: What all meds have you tried ?, posted by blueberry on September 16, 2006, at 8:51:05
You missed one.
I don't see placebo on your list.
- Scott
Posted by SLS on September 16, 2006, at 9:35:29
In reply to Re: What all meds have you tried ?, posted by blueberry on September 16, 2006, at 8:51:05
> Bottom line...we're talking suicidal depression here. I have had not one but two second opinions. All seem to agree this is not the time to keep messing around with meds.
There are a few things missing from your list, so if you do fail to respond to ECT, you are not totally screwed.
If you haven't already, it might be time to consider yourself either suffering from a condition outside the realm of psychiatric affective disorders or that you are manic-depressive according to the Kraeplin paradigm. It really doesn't matter whether you are bipolar or unipolar, you treat the condition as an affective disorder without bias and treat almost as if bipolar using combinations of standard antidepressants, mood stabilizers, and anything else you can get your hands on.
Have you combined Parnate + desipramine + amphetamine + lithium + T3?
Actually, that sounds pretty good.
Ah. The side effects. What are they? Side effects should be treated as aggressively as the depression in order for the whole thing to work.
I'm not saying that you and your doctors were ignorant. It is obvious from the drugs on your list that some exotic and aggressive treatments have been tried. I am just offering some real hope for you in the form of concrete alternative ways of thinking and actual untried treatments that are available to you should ECT not prove successful.
My guess is that something good is going to happen with the ECT. I can't wait to here some good news.
Will you be in a position to be able to go for monthly maintenance treatments?
- Scott
Posted by willyee on September 16, 2006, at 11:11:56
In reply to Re: Looks like ECT, posted by SLS on September 16, 2006, at 3:09:07
> Hi Will.
>
> > Scott you had ECT??
>
> Yes. I had 6 unilateral left followed by 9 bilateral for a total of 15 treatments. 3 x week. 5 weeks. Wow. 5 weeks. It didn't seem that long at the time.
>
> I actually experienced a transient improvement after the fifth treatment that lasted for a few hours. My brain is just so damned stubborn.
>
>
> - Scott
>WoW....honestly if i were on that route,id take comfort in knowing you had it.
Reason being although i understand we only fet a very small tiny slice of someone here,if you believe otherwise than youre on the net too much,HOEVER even so that slice does have a impact,and i consider you among one of the resources i use this board for knowledge wise,not that im downplaying your personality,as ive said before i try to come here for what it is and that is information,and again i consider you to be on the top list perhaps number one on information i trust.
So i would take that into consideration in any fears of ect.
I am obsessive however,and id feel regardless afterwards that i did some sort of mechanical damage to my brain forever,even if the ect was placebo,just a fake zap,but im glad you shared something like that.
Posted by SLS on September 16, 2006, at 12:18:02
In reply to Re: Looks like ECT » SLS, posted by willyee on September 16, 2006, at 11:11:56
> > > Scott you had ECT??
> > Yes. I had 6 unilateral left followed by 9 bilateral for a total of 15 treatments. 3 x week. 5 weeks. Wow. 5 weeks. It didn't seem that long at the time.
> >
> > I actually experienced a transient improvement after the fifth treatment that lasted for a few hours. My brain is just so damned stubborn.
> WoW....honestly if i were on that route,id take comfort in knowing you had it.
>
> Reason being although i understand we only fet a very small tiny slice of someone here,if you believe otherwise than youre on the net too much,
I do spend a great portion of the day on the Internet reading or posting on Psycho-Babble many days. Those are usually my good, or should I say, average and stable, days. Unfortunately, it is one of the few distractions there is for which I have both the interest and the capacity to function at. I simply cannot read magazines, newspapers, or books. My brain will only process one or two sentences at a time. Posts that are longer than two or three medium-length paragraphs are intimidating to me. I mostly just skim. I am surprised I don't make more mistakes proofreading my posts. There are plenty, though. TV is only background to keep me company. I'll pay attention to some CNN news and a few shows in particular. Sometimes, though, my depression gets so severe, that I cannot even do that. I just sit or lay on the couch staring into space or at the wall, content to be without thought. Music can sometimes capture my attention when I'm not feeling too bad. I was like this before ECT.> HOEVER even so that slice does have a impact,and i consider you among one of the resources i use this board for knowledge wise,not that im downplaying your personality,as ive said before i try to come here for what it is and that is information,and again i consider you to be on the top list perhaps number one on information i trust.
You made my day with that one, Will.
> So i would take that into consideration in any fears of ect.
I can only report what I have experienced and what I have witnessed. Another person I am close to has failed two courses of ECT, including bilateral treatment. She failed to respond, but is no worse for it. There have been people who have received a hundred treatments without a problem and others who have described having years worth of memory loss, retrograde amnesia, anterograde amnesia, and subsequent short-term memory impairments. I have heard of people needing to go back to school to re-learn courses that had been wiped from their memory. It is difficult to ingnore these reports. My guess is that severe adverse events like these are infrequent. I just wouldn't be able to characterize their frequency for you. I have met only one person who made the claim that ECT had wiped out their memory of academic material such that they had to go back to school. I have, unfortunately, been in instutional settings, both inpatient and outpatient, both research and private, and have come across people who have undergone ECT. I am not so afraid of it. I would consider bitemporal treatments if I were inclined to try it again.
> I am obsessive however,and id feel regardless afterwards that i did some sort of mechanical damage to my brain forever,even if the ect was placebo,just a fake zap,but im glad you shared something like that.
Yup. I can certainly understand that.
I am undecided as to whether or not I would recommend ECT to anyone.
I don't think I would try to dissuade anyone from ECT who were in a position similar to Blueberry's.
- Scott
Posted by flip-floppy on September 16, 2006, at 12:38:13
In reply to Re: What all meds have you tried ?, posted by blueberry on September 16, 2006, at 8:51:05
I noticed one drug missing from your list: tianeptine. I know about some sources that offers this drug (one source lists it for as low as $16 per 30 tablets.) [xxx] Most people seem to report few if any side-effects from tianeptine. It's also a very effective anxiolytic, I hear.
Anyway, I think it's sad that you are forced to work, when you have suicidal depression. Maybe this contributes to the depression.
Posted by iforgotmypassword on September 16, 2006, at 13:05:51
In reply to Re: Looks like ECT » willyee, posted by SLS on September 16, 2006, at 12:18:02
like nardil, or maybe parnate... NOW ONE THING TO CONSIDER! MAOIs are notorious for POOP-OUT. not like ECT isn't, but if you have an inital stellar response to an MAOI, would it be easy to get back where you are and me approved for ECT asap? would they even notice your depression, my experience has been many doctor's don't even recognize depression effectively when it becomes chronic, and is predominantly centered around certain symptomology like anhedonia, and this may be how you will be after MAOI poopout.
the unique type of serotenergic effect from MAOIs may effectively blast your visible (and not inner) dysphoric symptoms and on a relatively permanent basis. but if your inability to enjoy life in any meaningful way comes back, what use is this? what if they don't realize that you are in hell again? you cannot afford to burn this bridge (in my mind.)
people can talk about all of these grand and elaborate pharmacological intervention, but ask yourself how long did it take them to find them and how much of their life was lost? was the huge search worth it when considering time and life lost?
yeah... buprenorphine, T3-T4, buspar, elaborate combinations that mean nothing to most doctors, yaddi yadda. would it be useful to try these with doctors when it takes so much effort for them to let you try them, and even when they do its another teeth pulling excercise to get them to bring it up to meaningful doses? and even if they are somewhat willing to titrate up the doses, consider the time involved in getting the effective doses and often higher than typical effective doses you will need to try... and then be set up for another failure. do you have the current brainpower and mental state to devote to this? your ability to articulate given everything amazes me, i am nearly jealous, but it takes a lot of involved pharmaceutical consideration on YOUR PART, and the time... what if it takes years?!
i can tell you i have tried so much of this, it has involved more devotion than any doctor has been willing to give me, and it hasnt done sh** for me. i am stilll always miserable and living no life. my life is terrible, and i cannot believe p-docs are okay having me live like this. i wonder what i need to that i am not telling them, or if it is my drama-filled past they have on the chart. if i had ECT offered i would take it. what have i gained from twisting my brain on this crap? nothing.
consider also that IF YOU RESPOND TO ECT, the DOOR WILL LIKELY NOT BE SHUT IF YOU POOPOUT. doctors seem to be generally very understanding that if ECT has worked for you, they will let you do it again. they sound like they are willing to go the mile with you. if you need maintenace treatments, it sounds like they would probably be receptive to the idea. I WOULD STILL RECOMMEND INITIALLY TRYING MODERATE OR HIGH DOSE BIFRONTAL (NOT LOW TO MODERATE DOSE BITEMPORAL, I.E. TYPICAL UNILATERAL) OR HIGH DOSE RIGHT UNILATERAL.
from everything i read ECT is getting better. with the advances in bifrontal just over the last few years! the studies of drugs that help fight congnitive effects, like ketamine, and now donepezil (from just this month! http://www.ectjournal.com/pt/re/ject/abstract.00124509-200609000-00002.htm;jsessionid=FM6XwBFndGhJPhY84MDCLJ6pwtg9NpxxvFvrFhQL2Gq9D6nvngf4!1209472165!-949856144!8091!-1?index=1&database=ppvovft&results=1&count=10&searchid=1&nav=search )
and even if some freak accident happens, and your memory is blasted for the last 3 years... was how you have lived for the last 3 years include anything you really really would mourn the rememberance of? cognitive effects generally diminish, and you may be able to ask for cognition enhancers if it is an ultrapervasive problem. and if it does help, and the memory thing is too much, consider that when you go again post-possible-poopout, all of the new research to help get rid of cognitive effects they may know about and you may be easily able to ask to have used.
oh, do have painkillers ready for headaches, if you do this.
Posted by iforgotmypassword on September 16, 2006, at 13:10:31
In reply to Tianeptine » blueberry, posted by flip-floppy on September 16, 2006, at 12:38:13
sorry flippy-floppy, you may get in trouble for even writing what may just seem to suggest that you are helping distribute non-fda-approved rx meds. be careful. i know you are trying to help, so i am just warning you, just in case. people get suspended relatively easily for this even in cases where it wasn't even clear if something "illegal" was even suggested.
Posted by linkadge on September 16, 2006, at 13:30:34
In reply to Re: What all meds have you tried ?, posted by blueberry on September 16, 2006, at 8:51:05
>I am aware that the 70% to 80% of people who did >well with ECT are not hanging out at pbabble, so >this thread is a bit skewed to the negative side.
Who says that 70%-%80 of people improve with ECT.
>We don't hear at all from the 80% who did well >because they are out living life.
When they say that %70-%80 of people respond, it is probably by their critera, and within their deemed timeframe. There is no evidence that anywhere near %70-80 of people get any form of long term benifit from ECT.
>Also, clinical studies show that
>people who had depressions as a result of >ecstacy use (damaged serotonin synapses) that >were unresponsive to ssri's and snri's got well >with ECT.What does "got well" mean. That means that they feel better for a little while. But when (not if) they relapse, they will have ecstacy dammage plus ECT damamge. ECT does not repair your brain.
>I never did ecstacy, but I have had short >periods of cocaine, PCP, mescaline, amphetamine, >long periods of marijuana, and not to mention >all the psychiatric drugs mentioned above...who >knows what long term damage or modifications >they do to synapses and such. Of course, I am >aware I could say the same about ECT.I say quit all the psychiartic drugs, and go back to smoking pot. But seriously, try an MAOI. Parnate is a powerful pill. It has a track record of treating certain depression unresponsive to anything. Or try nardil. It is very broad spectrum, affecting all the monoamines and GABA. Demand an MAOI trial.
>There is still room for me to have second >thoughts and back out. But really, how many more >years of trials does one need before exploring >something else that has a good possibility of >helping.You will be back in the same place after you lapse, so whats the deal. Actually you could be in a worse position. I
>Bottom line...we're talking suicidal depression >here. I have had not one but two second
>opinions. All seem to agree this is not the time >to keep messing around with medsDo what you think you have to do. But if you havn't tried an MAOI, I don't think its time for ECT. There are litterally thousands of people who have not responded to anything but MAOI's.
Linkadge
Posted by linkadge on September 16, 2006, at 13:37:17
In reply to Re: Tianeptine ...warning! » flip-floppy, posted by iforgotmypassword on September 16, 2006, at 13:10:31
Sometimes it can be very difficult to quantify the kind of damamge that ECT may cause. The brain is a very powerful organ. Sometimes transient improvement from depression can mask long term cognive detrement. To say that somebody doesn't report cognitive problem doesn't mean they didn't suffer it. It could simply mean that it wasn't detected or that it did not affect a part of their brain that they regularly use.
Linkadge
Posted by Phillipa on September 16, 2006, at 20:32:10
In reply to Re: Tianeptine ...warning!, posted by linkadge on September 16, 2006, at 13:37:17
Blueberry since I've never been able to babblemail you. Are you male or female not that it matters. But are you a breadwinner? If not maybe stay home for awhile? Also wasn't it you who only took a few pellets of cymbalta. Reason I ask is maybe you've never taken an adequate dose of any med. I know you're med sensitive like me. Love Phillipa ps I really care about you
Go forward in thread:
Psycho-Babble Medication | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.