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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by uncouth on April 8, 2009, at 19:40:21
So I'm on my 12th ECT (6th bilateral). No improvement except for transient improvement the afternoon after the ECT. But by the next day, it's sh*tty again. Pretty major memory loss -- maybe part of that is good, keeps me from remembering my recent mistakes, loss of romance, jobs, etc. But who knows what it will do to me long term.
IN any event, i'm just about ready to get outta here. I don't know how much longer I can put up with this. My question is: has anyone had ECT, or known ECT patients who haven't seen ANY response by number 12, but who by, say, number 20 get remission?
Trying to figure out how much longer I should wait/push this treatment course.
Two final options for me: have some Temgesic and D-Cycloserine on order. Yes, we're getting experimental. And yes, I've already tried Agomelatine at 50mg...it's part of my cocktail (along with effexor, geodon, namenda, seroquel for sleep, adderall, lithium) but I happen to be out of it right now.
Love,
Alex
Posted by Sigismund on April 8, 2009, at 19:51:15
In reply to 12 ECTs. Not working. Ready to get outta here., posted by uncouth on April 8, 2009, at 19:40:21
Alex
I'm very sorry I can't help you.
Your experience seems similar to my mother's, except that after 9 months of terrible agitated depression (treatment with ECT and Effexor), she gradually got better, helped, when the cancer came, by the morphine as much as anything else.
It does occur to me that you are on so much stuff that it must be hard to know if everything you are taking is helpful.
All the best
Sig
Posted by Phillipa on April 8, 2009, at 21:28:03
In reply to Re: 12 ECTs. Not working. Ready to get outta here. » uncouth, posted by Sigismund on April 8, 2009, at 19:51:15
Could you be an opiod responder? Phillipa
Posted by Sigismund on April 8, 2009, at 23:18:00
In reply to Re: 12 ECTs. Not working. Ready to get outta here., posted by Phillipa on April 8, 2009, at 21:28:03
Yep, it comes to mind.
I had an old friend now dead, he wasn't depressed particularly, just f*ck*d and dying 3 ways at once, and this doctor threw away the shoebox of useless drugs he took (because doctors will always prescribe them but never narcotics), and did just that...prescribed him a narcotic.
But I'm not suggesting anything; just thinking aloud.
Posted by bleauberry on April 9, 2009, at 5:48:30
In reply to 12 ECTs. Not working. Ready to get outta here., posted by uncouth on April 8, 2009, at 19:40:21
Alex,
I am here to let you know you aren't alone. I've been there, done that, with everything you are experiencing.
I did have a momentary response that lasted about 2 days following the 12th treatment. Then I was in an ambulance talking suicide again.
Memory loss for me was severe. I even had to print maps to drive places I have been hundreds of times. I vaguely recognized buildings in my small town, almost as if they were from some faint dream I once had. I wasn't sure where my street was.
Today the most pronounced longterm effect is memory loss of names. I forget people's names all the time. Lots of customers at my place of business come up to me and say hi, with my name, and I sort-of recognize their faces, but I have no idea who they are or what their names are. But they sure know me. Other people know me by name and I swear I can't recall ever seeing them in my life and wonder who they are. I politely chat with them as if I know them because they obviously know me.
I am now a negative critic of ECT. With deep study on the topic, it has become obvious to me that the hype of its effectiveness is way overblown. Actually, none of the 6 of us patients who were getting ECT at the same time improved. None. Zero. Some recent metastudies I have looked at show that on average the relapse rate for those who do respond approaches 85%, and that most of those relapses happen within 4 weeks of the last treatment.
My insurance paid most of it, but the total bill was $22,000.
The best thing for me after ECT was something you wouldn't expect...I weaned off all meds and went clean. Yeah, I'm still in bad shape, still at pbabble, and still searching. But ya know what, I'm better than I was on all the meds.
I keep trying new ones. I was amazed how the med Milnacipran (soon to be released in USA as Savella, for fibromyalgia) began working in 3 days better than anything I ever tried. It was amazing. Unable to pee though, had to stop. But the point is...things CAN work after ECT has failed. I think the most important thing to do is wipe the slate clean, wean off all meds slowly, and start from scratch. Continuing with meds that are not helping is ridiculous, counterproductive, and in my opinion prevents meds that might work from being able to work.
Hang in there. You aren't alone.
Nardil. Parnate. Add a Zyprexa or Abilify. Zoloft+Nortriptyline. Clomipramine. Any or all with Ritalin. Milnacipran. There is stuff to work. If you think you've tried everything, you haven't.
From a biological point of view, take a look in your mouth. If you see silver fillings, they gotta be replaced with white ones ASAP. That mercury is very likely a major player in your illness. The other thing to look at closely is Lyme disease. If you have ever had any exposure to a tick environment, whether you remember being bitten or not, take Doxycylcine for a few weeks (will help the inaccurate testing to be more accurate as it brings out the hiding organisms), get tested, and see a doctor who knows Lyme very well. Either one of the above two conditions will produce a depression that is extremely difficult to treat, because it isn't from a neurotransmitter fault, it is from poisoning of the nervous system.
My personal opinion is ECT will not work, and neither will any of the meds you now take. You gotta draw a plan and a strategy to wipe it all clean and start from scratch. I am not strong, so if I could do it, anyone can. My weaning period was long, about 3 months, very slow with very tiny drops in dose each step along the way. I did it very careful and that's why it took 3 months.
Just my opinion.
Posted by uncouth on April 9, 2009, at 15:43:46
In reply to Re: 12 ECTs. Not working. Ready to get outta here., posted by bleauberry on April 9, 2009, at 5:48:30
bleu: thanks for your response. your messages are always well thought out, useful, and empathic. So Ixel worked well for you? Can you describe how it felt, compared to other meds? WHy don't you think you could replicate it's effect with a combo of Effexor and Desipramine, for example? So sad that you couldn't tolerate it physically, but you've given me something new to investigate.
Looks like it will be out in the US soon! But until then I can purchase it online. Is it really more powerfull than Effexor/Cymbalta?
Love,
Alex
Posted by bleauberry on April 9, 2009, at 16:35:27
In reply to Re: 12 ECTs. Not working. Ready to get outta here., posted by uncouth on April 9, 2009, at 15:43:46
> bleu: thanks for your response. your messages are always well thought out, useful, and empathic. So Ixel worked well for you? Can you describe how it felt, compared to other meds? WHy don't you think you could replicate it's effect with a combo of Effexor and Desipramine, for example? So sad that you couldn't tolerate it physically, but you've given me something new to investigate.
>
> Looks like it will be out in the US soon! But until then I can purchase it online. Is it really more powerfull than Effexor/Cymbalta?
>
> Love,
> AlexAlex, I have not tried Effexor. The best I can tell from reading other's experiences is that it is more similar to an ssri than anything. It's other effects, such as on NE, are actually fairly miniscule. I think one of its unstudied functions that makes it different is the opioid connection, which would explain why it feels a little different than ssris but also has the nastiest side effects of them all.
Cymbalta I have tried. It was a downhill deep plunge the whole time on it.
Ixel is very different. I do not think its "differentness" can be explained by simply calling it a balanced serotonin/ne reuptake inhibitor. There is something different about it.
All I know is, the 2nd day on it I was already feeling noticeably better. More active, cooking, playing guitar, talking. Sleep was bad though, and appetite was bad. By day 3 anxiety was gone. Sleep got awesome. Then a few days of backtracking, like maybe I was getting worse than I started. Then gradually each day was a tiny bit better than the day before. By the end of two weeks, I was probably 40% better than I had started, and I was still on the minimum dose of 25mg. That says a lot for a drug to do that at such a low dose in such a short time for someone who failed ECT and lots of other meds. I wouldn't say Ixel is more powerful than effexor or cymbalta, but that for me it had something special that they completely didn't have at all. It is a different drug that I don't think has anything similar to it.
Would some ssri+desipramine do the same thing? Well, in theory, it seems like it could. In reality, I don't know. These drugs do so much more than we are aware of. The simple stuff we know about, such as serotonin or NE reuptake, or 5th antagonism, or whatever, is only the tip of the iceberg.
I think my message is that post-ECT there is still lots of hope. That was proven to me by a drug I thought for sure would make me worse just like all the others did. It didn't. It surprised the heck out of me.
SSRI+TCA combos. Ixel (Savella in USA). Nardil. Parnate. Zyprexa or Abilify or Risperdal trials with any of them. Ritalin augmentation. Sometimes a rounded package such as a stimulating Parnate with a relaxing Klonopin opens a whole new world. Bottom line, don't return to strategies you've already tried. Think outside the box. Look for new stuff, new combos, new mechanisms.
And as I said, if a med is working so poorly that one feels ECT is the only way out, well, that med has no place in that person's life. It is probably making things worse. When we are on certain meds for a while, we don't realize it is those meds themselves making us feel so bad, not so much the illness underneath it all.
Posted by Zyprexa on April 10, 2009, at 19:54:52
In reply to 12 ECTs. Not working. Ready to get outta here., posted by uncouth on April 8, 2009, at 19:40:21
I would kill the ECTs, unless there is something you realy don't want to remember. I've had 12+, no idea how many plus. It was a lot. Mainly I think the ECTs made my psychosis worse. And 12 years later there is still a lot that I don't remember about my past. Wish I had never had them. And just started on the zyprexa instead.
This is the end of the thread.
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