![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 21 of 21. This is the beginning of the thread.
Posted by Bipolarsux on February 17, 2003, at 4:46:01
Hello Fellow Sufferers.
Well, it's official: I'm to get ECT "sometime" in the not-so-distant future. I failed to respond to the last conceivable drug combo and have crashed from hypomanic to severely depressed, as is usual.
Although ECT itself scares me, I'm more worried about losing my job, either directly from physical absence or from poor performance when I return (memory probs?). My job is the only thing that brings a sense of stability and routine to my life, not to mention income.
But I can't avoid ECT anymore since I've been pain for many years from trial after trial of medication that have all been failures. I'm falling apart again on this, my last combo. If I continue like this I am bound to lose my job anyway I guess since I feel so ill.
My pdoc wants ECT ASAP with maintenance if it works. That would mean being away from work *at least* one day a month: the hospital dosen't do ECT on Saturday mornings (dang it).
Despite the pain, I've asked that treatment be delayed until I can think of a plan to receive ECT and keep my job.The best I can think of is to fake a 'physical' illness that requires routine attention (but actually receiving ECT instead of course). This is bound to be much more well received than, "Hi boss. Did you know I've got a severe mental illness and now have to take regular time off work to get ECT? Great, see you Monday."
Before anyone says,"your boss can't legally fire you" etc etc remember that we live in the real world and the law cannot tell people how to *feel* - these feelings would have to manifest themselves in some negative way.
Any suggestions on illnesses that might fit the bill, or any other ideas at all? Crunch time has finally come.
Bipolarsux(to the point of destroying me...)
Posted by JohnV on February 17, 2003, at 7:46:04
In reply to Must get ECT. How explain to boss?, posted by Bipolarsux on February 17, 2003, at 4:46:01
Hello again. :-) Could you possibly list what you have and haven't tried with meds, and anyones you did a "bit better" on?With the ETC, I know what you mean about employers and their lack of understanding. Could you just not say your doctor has ordered a bunch of tests at the hospital, and you won't be able to make it in for a day because of all of them? Your doctor can write you a note, but they don't have to indicate what it is for. IF by any chance your employer gets nosey and asks, could you not just say whatever you could possibly get "tests" for; like anything from gastrointestinal problems to heart concerns, and just leave it at that? Talk to your doctor about it. Good luck, and let us know how you make out. John (the "V" one:)
Posted by Greg A. on February 17, 2003, at 13:17:29
In reply to Must get ECT. How explain to boss?, posted by Bipolarsux on February 17, 2003, at 4:46:01
I had ECT last fall and was off work for six weeks. I had one previous hospitalization for depression and was open about that with my bosses and co-workers, so I did the same this time. To most I did not give details about the ECT but I am sure the word spread. Your worries about the way people regard ECT are probably well founded. I forgot that this is uncertain and scary territory for most people and while many are supportive there are always some that can’t quite handle it. I know I am regarded in a different light by my management; no longer quite so competent; possibly unreliable; even perhaps dangerous like you read about in the newspapers or see on T.V. Some of this is my own feeling that I am not adequate anymore. But some of it is real.
I used to pride myself on being open about having a mental illness. I felt that if I treated it like any other disease then others would too. I now wish I had been more secretive. Trusted fewer people. One thing the openness with my bosses has done (I think) is to make them ready to believe the worst about me.
Even if I carry on at the same level it is perceived as a prelude to a relapse. My boss told me he now has to worry about covering for me when this happens again. This was stated as if it were some deliberate act on my part like I had chosen to get cancer. Other people may react differently. I can only comment on my situation.
I should add that my ECT series did not help me. Perhaps if it had and I felt pretty good, this work situation would seem a minor annoyance.
Ultimately though, you must do whatever it takes to live. There is no use avoiding treatment that may save your life, to hold onto your status at work. In my case, like yours, all manner of meds and combinations had failed. I had to try ECT. Without treatment I don’t think I would survive. The story I would use with my boss in retrospect would be that I was undergoing a med change and the effects were being monitored at the hospital. Once things leveled off I would be back at work and need only periodic absences for tests to regulate levels. I think most people have far less difficulty accepting the idea of medication than they do with ECT.
BTW - some people on maintenance ECT are able to go to work following morning treatments, so I am told. After 14 of them, I can see this being possible. The memory problems could be a factor so I would wait and see how you react.I wish you the best of luck.
Greg
Posted by bozeman on February 18, 2003, at 22:12:34
In reply to Re: Must get ECT. How explain to boss?, posted by Greg A. on February 17, 2003, at 13:17:29
I like Greg's idea of creative medical jargon. I hate to say it, but I know of a situation where an acquaintance was going to get ECT and should have flat out lied to her boss instead of telling her what was up. She caught so much grief over it later that she ended up quitting from the stress. Not trying to scare you (I think you are already well aware of the delicacy of the situation or you wouldn't be asking for input.)
Can't ya just tell your boss ya gotta have tests run? Or dental work or something, that makes you come back periodically for several weeks? Could you get your dentist in on it so he could help cover for you if it became an issue?
I wish you luck and blessings in handling this. And I hope the ECT gives you the relief you seek.
bozeman (who keeps depression treatment from boss and has done so for years, so I practice protective harmless deception, as well)
(sidebar: I read somewhere that dentists have the highest suicide rate of any profession in the world. I figured it was from sticking their hands in people's stinky mouths all day -- but the article said that it was "mad-hatter madness" caused by mercury poisoning from compounding and handling amalgam. At any rate, dentists in general might be sympathetic to the plight, if the suicide thing is true.)
Posted by Bipolarsux on February 20, 2003, at 2:45:09
In reply to Re: ECT. How explain to boss? -- Bipolarsux, posted by bozeman on February 18, 2003, at 22:12:34
Many thanks for your input. It confirmed my dark-yet-probably-accurate suspicions about employer attitudes to mental illness and especially ECT.
My docs are pretty honest guys but I am hoping to get them to play along with my little game of deception when I need it.
(Hopefully it won't take too long to work something out as I'm feeling bad enough to actually *want* ECT *now*!)Thanks again.
Bipolarsux
Posted by Bipolarsux on February 20, 2003, at 2:53:26
In reply to Re: Must get ECT. How explain to boss? » Bipolarsux, posted by JohnV on February 17, 2003, at 7:46:04
Hi John,
> Hello again. :-) Could you possibly list what you have and haven't tried with meds, and anyones you did a "bit better" on?What haven't I tried? That is a hard one. I've tried a sh*t load of ADs, APs, benzos, anticonvulsants and 'alternative' stuff.
Some I did a "bit better" on but that was still crap - and it would never last, forcing the usual jump to the next drug.I'm tired of it. ECT seems like a sledgehammer but I think I now understand that I have an illness like concrete!
Let me ride the lightning, just stop the pain!
Bipolarsux
Posted by ShelliR on February 20, 2003, at 8:27:08
In reply to Re: Must get ECT. How explain to boss?, posted by Bipolarsux on February 20, 2003, at 2:53:26
I'm going to put my vote in with JohnV here. I would not tell your boss that you're getting ect.
This last year, I told people I had a pain disorder and they were trying a lot of different treatments to help. I wasn't specific, they probably thought I had fibromyalsea. I took so many days off from work and really didn't know when I'd be able to work. That was the hardest part for me. That I would feel okay for a couple of weeks, start working again, then fall too depressed again.
Saying pain wasn't really a lie and it gave me the
luxery (HA!) of falling apart again without needing to explain it. (Like how many times can you have your appendix taken out.) I don't have a boss but I had plenty of people I owed work to and it felt really bad not to be able to be truthful. But I knew if I told one client, it would be all over and people do act quite stupid about depression.By the way, the ect did not work for me, but it was worth trying. Definitely.
Shelli
Posted by Greg A. on February 20, 2003, at 12:31:44
In reply to Re: Must get ECT. How explain to boss? » Bipolarsux, posted by ShelliR on February 20, 2003, at 8:27:08
Hey Shelli,
Are you okay sharing some of your ECT experiences? It didn’t work for either of us and I am curious why you would say it was worth it? How many treatments did you have? No problems with memory loss? What are you doing now for your depression?
If you’d rather not say just politely tell me to mind my own business!Greg
Posted by ShelliR on February 22, 2003, at 11:36:56
In reply to Re: Must get ECT. How explain to boss?, posted by Greg A. on February 20, 2003, at 12:31:44
Hi Greg.
"Worth it" was probably not the right phrase to use. I don't mean that it did me any good, just that the odds are really good with ECT, so it did feel for me like the logical next thing to try. And cross off my list. I think I got ten or twelve bilateral frontal treatments. I'm not sure whether it affected my long term memory; there are things definitely from those weeks that I'll never remember, but that's not a big deal to me. My short term memory was already bad before the treatment--mostly recall of names (people, movies, etc.). And I do feel foggier than before, but because I have a dissociative disorder, I tend to be really spacey, anyway.
How many treatments did you get? Bilateral?
I still haven't found anything to rid me of the depression, aside from methadone. And my doctor hates when I go up on the meth, but it is habituating, so that's going to be inevitable. I'm hoping I'll reach a plateau though. Without the methadone, I'd be dead now for sure. The pain (physical and psychological) was unrelenting and unbearable.
I'm still trying new things, mostly because I would love to get off methadone. Besides lexapro, I also did trials with straterra and abilify and my body had that horrible internal shaking. My doctor just gave me cogentin for the shaking and I've felt a lot better in the past few days. I may try again with the abilify, combining it with cogentin.
When I'm working, it's so hard to do drug trials. I haven't worked for the past ten days because I felt like I was crawling out of my skin and couldn't focus. So I'm reluctant to try the abilify again, but I'm running out of ideas. So far with this pdoc, I'm the one who sort of decides what the next step is. My doctor always knows what I'm talking about, but for some reason he's not the one who comes up with the ideas. Like even though I told him how horrible my body felt, he didn't suggest the cogentin. Thank goodness for this board; it's an amazing source of info.
When did you do ECT? What are you on now?
Shelli
>
> Greg
>
Posted by Greg A. on February 24, 2003, at 14:37:19
In reply to Re: ECT. » Greg A., posted by ShelliR on February 22, 2003, at 11:36:56
Shelli,
Thanks Shelli for all the info. I admire you for continuing to work through all this. I know what it’s like from that perspective because, mostly I have done the same. It’s so hard to awake with new drug side effects and go to work and try to act as if everything is normal. And you never know when something weird will strike. I try to tough it out but I am not sure in retrospect that it’s always a good thing.
I had ECT in Oct./Nov. this past year. 14 bilateral treatments – well the first was unilateral. I was of the same mind as you. ECT seemed to be a logical step. Meds were not working – I had an awful summer – and as you say the success rate is pretty good. I was so disappointed when I still felt lousy afterwards. In fact I was worse. No ADs during the treatments did not help. I just sort of plunged after. There were a few other contributing outside factors which I have posted about.
Many of the drugs you talk about I am not familiar with. I am currently on Lamictal (doc thinks I may be BPII) and Celexa. I don’t think either is doing much. I take Klonopin for anxiety and it helps a bit although after a long period I think the same dose just serves to stave off withdrawal. My doc also gave me chlorpromazine when I was really feeling suicidal and not sleeping. I have used it intermittently in low doses and it does seem to help.
What was (is) your physical pain like? Why methadone? What does it do for depression? I will look up some info on the other drugs you have talked about because I think I have gone through almost all the standard stuff and combinations so I need some new things for my list.Thanks Shelli,
Greg
Posted by ShelliR on February 25, 2003, at 13:53:48
In reply to Re: ECT. » ShelliR, posted by Greg A. on February 24, 2003, at 14:37:19
Hi Greg.
<What was (is) your physical pain like? >
It's very heavy pressure in my chest, sort of like someone's stomping on me. I can't totally separate it from depression since many people feel tightness in their chest when they are depressed.
<Why methadone? What does it do for depression?>I started using hydrocodone (vicodin) and found that it totally took all my pain away, both physical and psychological. Then a new pdoc (new for me) decided that since vicodin was working, he'd prescribe oxycontin since it lasts much longer. Unfortunately I kept having to go up on the oxy until I couldn't afford it. So that's why another doctor (a pain specialist) is prescribing methadone instead. But I wish so much that I had just stayed on the vicodin because it did the trick without me having to keep going up. Now I have to use so high a dose of any opiate to help, even buprenorphine.
Just curious if you've tried nardil. That's the MAOI I'd been on for years, and it was very successful for me. Finally, it lost its effectiveness, but I'm grateful that it gave me a more or less normal life for almost twenty years.
I think the nardil probably stopped working because of serious changes in hormones, etc.Opiates are great; you just have to know that chances are that you will have to keep increasing your dose over time. That bothers my doctor more than me. I read an article on opiates and pain from a doctor at NIMH who said that increasing is almost inevitable, but it's still not difficult to get off when you're ready, as long as you do it slowly.
Shelli
Posted by Greg A. on February 25, 2003, at 14:27:35
In reply to Re: ECT. » Greg A., posted by ShelliR on February 25, 2003, at 13:53:48
Shelli,
Thanks once again for answering all my questions.
Twenty years of normality from Nardil! Sounds good to me. I have just asked my pdoc about trying Parnate or Nardil. She had mentioned it before but we never did try it. I will keep at her about it. The only thing close I’ve ever been on is Manerix and that did not work for me.
I am still curious about the ‘pain’ and I hope you don’t mind a few more questions. I have always associated the tightness in the chest with anxiety. With me it is almost constant and I would not describe it as painful in a physical sense. The anxiety at times can be totally debilitating for me. I can’t function at all or it just wears me out. I know that during the times when something seems to work and that anxiety is reduced I am not nearly as depressed. I enjoy people more and I feel capable of handling life’s little curve balls. I had a hyperthyroid condition almost 30 years ago that went undiagnosed for several years. During that time the tightness in my chest was at a point where a deep breath, if I could muster one, was painful. I could hardly even speak because of the tightness and shakiness. My current state is not as bad but the similarities are there. I know a few people who are being treated for depression that experience a great deal of physical pain as well. Back problems with no apparent cause. Fibromyalgia. I get very sore and achy when I am most anxious and depressed. The anxiety and depression always go hand in hand for me. Tell me a bit more about pain if you don’t mind. Can you not go back to the Vicodin now?
Greg
Posted by Bipolarsux on February 26, 2003, at 5:32:05
In reply to Re: ECT, pain and advice » ShelliR, posted by Greg A. on February 25, 2003, at 14:27:35
>I had a hyperthyroid condition almost 30 years ago that went undiagnosed for several years.
Hi Greg.
Did you know that ECT increases thyroid activity, at least temporarily? I wonder if this contributed to your 'feeling worse' after the treatments? Can you remember if if it was monitored during your treatment?
From what I can gather, if your thyroid was becoming overactive again then it was probably your anxiety that was exascerbated?
I've been reading college textbooks on ECT since I am destined to receive it and thought I'd educate myself as much as possible beforehand. Thyroid function was definitely on the list of temporary physiological effects, along with heart rate, eye, brain and (I think) blood pressure.If you don't mind, please tell me more about how ECT affected you - but if you do mind that's totally OK.
Bipolarsux.
Posted by Greg A. on February 26, 2003, at 12:24:47
In reply to Re: ECT, pain and advice » Greg A., posted by Bipolarsux on February 26, 2003, at 5:32:05
Thanks BPsux for the thoughts on thyroid and ECT. Like you, I did some reading before agreeing to ECT – but not too much because I was so desperate to do something that would get me out of my depression. It is highly unlikely that I experienced any thyroid over-activity. I am on thyroid replacement and have been for 20 years. After initial treatment of my hyperthyroidism (radioactive iodine) I went hypothyroid almost immediately and have very little natural thyroid activity. Hence the replacement therapy. I have my thyroid levels monitored regularly.
The symptoms of ‘feeling worse’ were definitely not akin to being hyperthyroid. I was off all ADs before and during the treatment period and I am sure that as soon as the initial enthusiasm of thinking I would be cured by ECT wore off I became extremely depressed. It was initially an agitated depression leading my doc to change my diagnosis to BPII.
How did ECT affect me? I certainly don’t mind talking about it but I don’t know where to begin. At the beginning, perhaps? I have been on ADs for most of the last 15 years with limited success. Good periods here and there. Mostly lousy but I had noticed that in recent years each depressed episode was longer and more severe. My doc had asked me about ECT a number of times and I had always said that I ‘wasn’t that bad yet.’ It became almost a standing joke of how to assess my condition. “Ready for ECT yet?” Last September I said YES. We discussed the possible affects of the treatments, how long I would be off work and so on.
Things that caught me by surprise or worried me:
That I would need a minimum of 8 and most likely 14 to 16 treatments. I was expecting 3 or 4 for some reason.
That the memory loss could be almost total for the treatment time and also affect some longer term aspects
That doc said I would be hospitalized for the entire treatment time. I had been admitted to the psych ward before and did not want to spend a month or more there.
General anesthetics worry me – I have had several ‘regular surgeries’ done with spinals to avoid them so the prospect of 16 sessions bothered me.But generally I was enthused about trying ECT. I managed to talk my doc into doing all but the first 2 treatments as an outpatient providing I reacted okay. The rest of the concerns - I just accepted as a necessary thing to get better.
Comments on treatments:
First session I asked doc what kind of ECT I was getting. They did unilateral just to see how I reacted. Second session I had to remind him to do bilateral. He just switched electrodes like he had hooked up a car battery wrong.
Bit of a headache – nothing much else. I had kept a journal with things I thought I might forget – like where my car was parked etc. No problems there.
Doing treatments as an outpatient was no problem. Just a ride to and from the hospital and join the line-up for treatment.
Felt pretty good the first couple of weeks – energized and enthused for first time in a long while. Worked on home renovation projects. I had between 2 and 3 treatments per week.
Third week I noticed memory gaps. I had no idea where I had purchased materials for home renos or what I had done inside wall for wiring etc. I was like someone else had done the work while I was away. I also noticed that despite my increased energy level and need for less sleep, I was feeling quite low emotionally. Needed almost no sleep for days on end. Would go to bed at 11:00 and be up by 2:00 reading at first except then I couldn’t focus to read. Watching TV. Surfing.Later associated a lot of this with hypomania.
Was able to accept the memory loss okay although it was frustrating. Pick up a book you had read the day before and go to the bookmark and have no idea what had happened previously. Someone would refer to a recent conversation and I had no idea what took place.
After lucky 13th treatment I told my doc ‘enough.’ I was feeling so low as well as very agitated. I was very suicidal. Most I have ever been. I could see no other way out and as a fellow sufferer put it to me, “you are not only depressed and suicidal, but you have the energy to make plans and carry them out!”
This of course is not typical of ECT where it is often used with suicidal patients because of its ability to provide quick and considerable relief. So please don’t take me as the typical case.
Things I had not counted on:
The stigma of ECT – I told everyone – I should have told only a few. You can tell people that you take Prozac and they go so what; doesn’t everyone? ECT is a different story.
The memory loss and confusion when I returned to work. I couldn’t remember events from the treatment period but simple things from before. My password on my computer. Who certain people were. I got a lot of long pauses when people drew a blank with simple questions posed to me. This has improved but there are still some gaps. Doc had said I would be off work for 5 or 6 weeks but did not mentioned I would be non functional at work for another 6 weeks after.
The whole thing was compounded by being in the worst depression of my life. If the ECT had greatly benefited me, my entire recollection would likely be different. I think what it did was induce a hypomanic state which subsequently turned into severe depression. After thinking about it. Hypomania was not a new thing. I have experienced it before and associated it with feeling better. In reality I knew it was not ‘normal.’Like Shelli, I don’t regret going through ECT. I always would be wondering if it would be the answer. There seems to be no lasting side effect that I cannot accept or deal with, other than the fact that too many people know.
Apologies for the long response, but you did ask!
Greg
Posted by ShelliR on February 26, 2003, at 13:44:49
In reply to Re: ECT, pain and advice » ShelliR, posted by Greg A. on February 25, 2003, at 14:27:35
Hi Greg,
I'm amazed that your doctor had you try ECT, without trying either nardil or parnate or both.
I don't know how to describe the pain. It involves tightness, but asked to describe it, I would call it pain (as opposed to discomfort, etc.)
I just had a couple of good weeks, then bam--the pain is there again. I'm having some conflict with my sister and brother, and my dad had a horrible reaction to chemotherapy. He has lung cancer and now he doesn't have the option of chem, so besides radiation, there's no good treatment now (he was supposed to do them together for the best possible results).
Anyway, I very sure that the condition of my father is greatly increasing my depression. He's still not completely breathing on his own. We're very close.
Because I went so high on oxycontin, vicodin is just too weak to have any effect now. That's why I'm so sorry that I agreed to change meds with a doctor who turned out to be both ignorant *and* a
bastard.Re nardil: I had very few bad effects, but I could only go up to 30mg or I couldn't sleep at night--no matter what time I went to bed I'd sleep just three hours and then was wide awake. Thirty mgs was fine, just didn't work anymore.
Shelli
Posted by Bipolarsux on February 27, 2003, at 5:15:37
In reply to Re: ECT - long and possibly very boring - sorry » Bipolarsux, posted by Greg A. on February 26, 2003, at 12:24:47
Hi Greg.
I did not find your experience boring at all. However, it does make me worry that ECT will not work for me either.
We share some important histories: on medication for about the same length of time, pretty poor response in general, bipolar (though my manic symptoms sound worse, my depression less). I have read that one important predictor for response to ECT is response to medication - medication resistance correlates with ECT resistance. My pdoc is certainly adamant about my medication resistance (hence the push for ECT).
I am nervous about coming off my medication before undergoing ECT because, as poor as it is, the pain of completely uncontrolled illness is unbearable. Therefore if the ECT starts to prove ineffective I will be in the same terrible situation that you were. Also, I must withdraw from Klonopin (starting now) again and this is agonizing for me (I've done it before). Even reducing the dose by 0.25 mg every 2 weeks is a hard battle. Seems like you've got to go through a whole lot of hell before you get to heaven eh?
I've heard enough about the memory problems of bilateral ECT: I will not consent to them. If unilateral does not work then I guess crappy medications are my destiny and I'll have to develop some radical new plan to try and get some satisfaction from life.In the meantime, while I am withdrawing from medication I've got to find some good story for the boss so I can keep my job - my one source of stability (not to mention income).
If you have anything more at all to say about ECT or anything else, please do so.
BPsux
Posted by ShelliR on February 28, 2003, at 12:49:04
In reply to Re: ECT - long and possibly very boring - sorry » Greg A., posted by Bipolarsux on February 27, 2003, at 5:15:37
Hi BPsux,
Just wanted to let you know that supposedly *frontal* bilateral ect has the benefit of having the success of bilateral, without all the memory loss.
In the hospital where I got ect, all the doctors use frontal bilateral because they have a greater success than unilateral *and* it doesn't have all the side-effects of bilateral non-frontal (like memory loss). When I decided that I wanted to try ect, I would only consider unilateral, but none of the available doctors where I live would consider it. So I wasn't given any choice. The positive is that I'm not now sitting here wondering if I had gone for bilateral whether that would have been successful.
Someone on this board (can't remember who) started with unilateral, then switched over to bilateral. You might want to do a psychobabble search, if the search function is working.
btw, I also couldn't take valium during the ect because it might have supressed the seizure that is the basis for the ect.
I am very hazy about the three or four weeks when I was getting the ect (i.e., I went to see a movie but I have no recollection of it and I probably never will.) Other than that, I'm not sure whether in general my post ect memory is any worse than it was before. It's hard to tell especially because I'm now doing more drug trials (testing abilify presently) and I'm feeling a bit disoriented--I went up to 15mg just yesterday.
So anyway, good luck to you,
Shelli
Posted by Bipolarsux on March 2, 2003, at 1:20:27
In reply to Re: ECT - long and possibly very boring - sorry » Bipolarsux, posted by ShelliR on February 28, 2003, at 12:49:04
Hi Shelli,> Just wanted to let you know that supposedly *frontal* bilateral ect has the benefit of having the success of bilateral, without all the memory loss.
So I've heard. According to my pdoc it is more-or-less being "trialled" by the hospitals in my area but there has not been a firm verdict made on it yet. There dosen't seem to be many publications on bifrontal, but to me it dosen't matter as much as clinical experience anyway. I might consider bifrontal if unilateral dosen't work, but at this point I still can't see myself consenting to bitemporal.
I get the impression that unilateral is often not given a fair chance because it takes longer to work. I'm going to try and tough it out...> In the hospital where I got ect, all the doctors use frontal bilateral because they have a greater success than unilateral *and* it doesn't have all the side-effects of bilateral non-frontal (like memory loss).
It's pretty cool to hear positive clinical feedback like that.
> When I decided that I wanted to try ect, I would only consider unilateral, but none of the available doctors where I live would consider it.
So I wasn't given any choice.At least I do have that option.
> The positive is that I'm not now sitting here wondering if I had gone for bilateral whether that would have been successful.
Yes, I understand what you mean. It is like the never-ending search for "the" medication that will "cure" you: there's always one you haven't tried and you wonder if it holds the key.
> btw, I also couldn't take valium during the ect because it might have supressed the seizure that is the basis for the ect.
Did you have to completely withdraw, like me, or were you just asked to stop cold turkey, for example, 24 or 48 hrs before a treatment?
>Other than that, I'm not sure whether in general my post ect memory is any worse than it was before. It's hard to tell especially because I'm now doing more drug trials (testing abilify presently) and I'm feeling a bit disoriented--I went up to 15mg just yesterday.
Although I am pretty damn scared of memory loss, I think of how medication affects my memory also, and ECT becomes less frightening. For example, about 90% of the ADs I've tried affected my memory quite badly; benzos are the worst and also affect my verbal recall and fluency.
> So anyway, good luck to you,
Thanks, and thank you very much for your post.
BPsux
Posted by Ilene on March 2, 2003, at 11:51:17
In reply to Re: ECT - long and possibly very boring - sorry » ShelliR, posted by Bipolarsux on March 2, 2003, at 1:20:27
I wonder how well experiences of people here reflect the effectiveness of ect, because those for whom it *does* work are unlikely to be posting here. I mean, if you feel well, why hang out with sick people, when you can get on with your life? How well does ect actually work?
As my depression got worse and worse, and I started reading everything I could, ect inevitably came up. It's clearly controversial, but some psychiatrists assert it's the best treatment for depression. (I think for BP disorder and some other conditions, but I play for both teams. I'm not clearly unipolar or bipolar.)
But I wondered, if it's such a wonderful cure, why do people complain about it? Not just people who have a philosophical objection, or those who think "One Flew Over the Cuckoo's Nest" is realistic, but people who experienced it?
I hate the idea of having my brain rearranged by a literally convulsive jolt of electricity. And there is that incredible stigma attached to ect. So I freely confess I am predisposed against it. Even so, I want to investigate anything and everything that could help me. No sense in dismissing it out of hand.
The web is full of sites about how awful ect is, how it destroys your brain, and so on. I ignored those and went to medline and more respectable sites instead. What follows is the impression I got. Please don't take it as gospel, this isn't a scientific treatise, and I may have missed some things or misinterpreted them.
I wish I could find something that explains ect like the official package inserts required for prescription drugs!
The consensus is that ect is more effective and safer than other therapies for depression. However...most of us know that drugs and psychotherapy aren't always effective. Effectiveness is relative. "Better than placebo" is sometimes (often?) merely "better than nothing".
Many people are what is called treatment resistant. (The name implies that the *person* resists treatment, but it means we don't get better despite trying a bunch of drugs. Different sources use different numbers for the specific number of drugs.} Ect is less effective for treatment-resistent patients.
Another thing I found: it seems that many if not most people relapse. Doctors have been trying to prevent relapse with more ect, more drugs, more ect plus more drugs...I found only a few articles about what happens to people after a year or more, so it's hard to evaluate relapse rates.
Most doctors who like ect minimize the side effects. They say that memory and cognitive problems wear off, or people forget only what happened around the time of treatment. I think they assume if they can't measure these deficits "objectively", they don't exist. I haven't found anything that seriously questions the validity of the tests.
So--if you need more ect treatments to keep you from backsliding, wouldn't each one cause more and more fuzziness and forgetfulness?
The value of ect is that it *can* be fast and effective, which is gratifying to everyone concerned. A lot of people would gladly trade some memory for feeling human.
Personally, if my pdoc ever presents ect as a serious option, I want to ask her a lot of questions. Assuming I can think of the questions. (Posting messages is one of the few things I can do anymore. I don't know why, when I can't concentrate on day-to-day activities.)
Please, please, please, pretty please with sugar on top, don't rule out ect because of what I wrote here. I have a terrible time making decisions. I always want to gather as much information as I can. That's just me. Don't base your decision (it is *your* decision) on someone else's reservations.
Feedback please, if anyone bothers to read this far.
--I.
Posted by Bipolarsux on March 3, 2003, at 5:18:40
In reply to ECT --another really long and possibly boring post » Bipolarsux, posted by Ilene on March 2, 2003, at 11:51:17
Hi Ilene
> I wonder how well experiences of people here reflect the effectiveness of ect, because those for whom it *does* work are unlikely to be posting here. I mean, if you feel well, why hang out with sick people, when you can get on with your life?
Yes. We are all here because we are not feeling well. Probably then we are not a "representative sample," since some people at least must get better!
> I hate the idea of having my brain rearranged by a literally convulsive jolt of electricity. And there is that incredible stigma attached to ect. So I freely confess I am predisposed against it. Even so, I want to investigate anything and everything that could help me. No sense in dismissing it out of hand.
Amen to that. I feel exactly the same. Sometimes though you must steel yourself and trust in the judgement of others (in this case my pdoc). Napolean Bonaparte said of his battle tactics, "On to the fight, then we'll see." It is sort of like that with ECT I guess.
Another one I like is Shakespeare's line about "it takes a storm to bring on clear skies" (or something like that). Time for my neurons to have a storm.
> The consensus is that ect is more effective and safer than other therapies for depression. However...most of us know that drugs and psychotherapy aren't always effective. Effectiveness is relative. "Better than placebo" is sometimes (often?) merely "better than nothing".Very true.
> Many people are what is called treatment resistant. (The name implies that the *person* resists treatment, but it means we don't get better despite trying a bunch of drugs. Different sources use different numbers for the specific number of drugs.} Ect is less effective for treatment-resistent patients.
I have read that too, and it worries me. After all, once you've tried ECT, where do you go from there?? It is nearly always a last resort.
> Another thing I found: it seems that many if not most people relapse. Doctors have been trying to prevent relapse with more ect, more drugs, more ect plus more drugs...I found only a few articles about what happens to people after a year or more, so it's hard to evaluate relapse rates.
I would definitely relapse: I relapse immediately upon stopping medication. Unless ECT is somehow curative (which I have not seen any evidence for)my pdoc and I have already decided that maintenance ECT would be necessary (presuming it works in the first place).
> Most doctors who like ect minimize the side effects. They say that memory and cognitive problems wear off, or people forget only what happened around the time of treatment. I think they assume if they can't measure these deficits "objectively", they don't exist. I haven't found anything that seriously questions the validity of the tests.
I have given up trying to "predict" how it will affect me - I'm going to give it a try and see.
> So--if you need more ect treatments to keep you from backsliding, wouldn't each one cause more and more fuzziness and forgetfulness?
Like medication, I imagine you would reach a dose-dependent steady state - if you had to get lots of regular ECTs I imagine your "steady state" would be pretty hazy, but maybe less so if you don't need them as often.
> A lot of people would gladly trade some memory for feeling human.
Since considering ECT and its effects on memory, "Blade Runner" has suddenly become my favorite movie as it deals with memories and their central role to "feeling human"!
> Personally, if my pdoc ever presents ect as a serious option, I want to ask her a lot of questions. Assuming I can think of the questions. (Posting messages is one of the few things I can do anymore. I don't know why, when I can't concentrate on day-to-day activities.)For me:
Medication = poor memory and concentration.
Poorly treated/untreated illness = poor memory and concentration.
ECT = ???
I have the daily problem with cognition as well and I know the pain it must be causing you. (Nevertheless, you write very fluently and coherently - not a bad sign!)> Please, please, please, pretty please with sugar on top, don't rule out ect because of what I wrote here.
Don't worry. Your views almost match mine perfectly and I thank you very much indeed for your post.
But my mind is already made up: I'm going to trust my doctor on this one and go through with it. In the meantime I've just(!) got to withdraw from Klonopin and figure out a way to keep my job.Thanks again Ilene.
BPsux
Posted by Rachel2 on March 24, 2003, at 14:13:38
In reply to Re: ECT - long and possibly very boring - sorry » Greg A., posted by Bipolarsux on February 27, 2003, at 5:15:37
Your doctor can put you on disablity, and leagally you do not have to give an explaination.
This is the end of the thread.
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