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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 16 of 16. This is the beginning of the thread.
Posted by blueberry on November 8, 2006, at 22:36:52
ECT electroconvulsive therapy has been amazing for me. For 30 years I've had this awful pattern of getting varying benefit from drugs for a little while and it never is great and it never lasts. ECT has worked better than anything. People now say I am more alive, more active, more confident, more engaged, and more happy than they have ever known me to me. I truly feel all of those things.
The primary side effect amnesia is a cruel trade-off, but I will offer a way to minimize it. They did not warn me about it so it was absolutely terrifying when it happened. I had no recollection, for example, of going with a friend to pick up some firewood just a week earlier. I did not recognize the name of a person I had hired and trained a few weeks earlier. The memory loss involved huge events as well as some low level fogginess of other things. The good thing was that it only involved things right around the time of treatment, not everything, and not other times of my life. It can be controlled.
The loss of ability to have sex kicked in at about week 4 of treatment. The ability to have sex again returned 8 days after the last treatment, and sex actually was more powerful than ever.
The treatment they gave me was Monday, Wednesday, and Friday mornings for 4 weeks, then Monday and Friday mornings for 2 weeks, and then reassess after that. In my opinion, that is too much. Amnesia can be controlled, sexual problems can be avoided, and effectiveness retained, by modifying the schedule. My sexual difficulties were apparently rare.
Here's a better schedule...
Monday, Wednesday, Friday mornings for 1 week.
Monday and Friday mornings for 2 weeks.
Friday mornings for 4 weeks. Then reassess.
For me the reassessment has resulted in the doctor's opinion to stop treatments for a while and if needed go to once every 2 weeks, once a month, once a quarter, or whatever, but most patients stay well a long time and most never need any more.What is ECT like? For me, I would go into a nice hospital waiting room early in the morning and there were about 6 other people there. Then they take us to another room where each person gets a bed on wheels in their own draped cubicle. Then a nurse hooks up something to a vein in your arm. When it is your turn, they wheel your bed into another cubicle with gadgets and a nice doctor. Through your arm they give you anesthesia and quickly you are out. They give electrical stimulus to your head, and then wheel you back to your cubicle. You wake up pretty quickly, you feel fine, and you are ready to leave and go about your day.
When I stopped my ECT I was pissed off about it, due to the amnesia and sex. But it was about a week later it became clear to me it was because they had been too aggressive. The doctors are now seeing they were too aggressive and are going much more gently. They just misjudged my case.
ECT is amazing. Those waves of depression, those meds that work only somewhat, those meds that poop out, those suicidal thoughts, those uncomfortable feelings of being around crowds, those noninterested emotions in things...all are conquered by ECT. You can actually become more of a real alive person than you ever thought.
I wondered if maybe it works for some people and not others, kind of like drugs. They told me it works on everyone they try it on. The drawbacks...it costs about $225 each treatment and my insurance only paid half of that...and some spotty temporary amnesia around the time of treatment.
I was also on my regular 10mg prozac and 5mg zyprexa through it all and am still taking them. Over the years I have had some spotty responses to drugs, but never any that were thorough and fulfilling like ECT. Each day I ask myself "Are you manic?" But I'm not. It's just that the difference is indeed that dramatic. I just feel solidly normal for the first time in my life. And I talk a lot more than ever before (as you can see).
Now the scary part is wondering how long the normalcy lasts. The doctor tells me most people stay well forever after a series of ECT. A few require periodic treatments once in a while. If I need more, at least I know to keep them spaced far apart and not be so darned aggressive.
Posted by elanor roosevelt on November 8, 2006, at 23:39:00
In reply to ECT Followup...amazing! (all about it, long), posted by blueberry on November 8, 2006, at 22:36:52
I keep thinking about ECT then I think again -- that I will wait until they fine tune it a bit more. but why are you still on meds?
Posted by Phillipa on November 8, 2006, at 23:47:26
In reply to Re: ECT Followup...amazing! (all about it, long), posted by elanor roosevelt on November 8, 2006, at 23:39:00
Blueberry I'm so happy for you there are no words to describe it. For people I include myself who don't tolerate meds maybe this is the way to go. Wonder if they take medicaire? Love Phillipa
Posted by cecilia on November 9, 2006, at 2:06:38
In reply to ECT Followup...amazing! (all about it, long), posted by blueberry on November 8, 2006, at 22:36:52
I'm glad you had good results, Blueberry, but if your doctor is saying it works on "everyone they try it on" he is incompetent beyond belief. I haven't tried ECT but many Babblers have had unsuccessful results from it. Nothing, unfortunately, works on everyone, and the fact that ECT is often followed by relapse is extremely well documented. Cecilia
Posted by cecilia on November 9, 2006, at 2:18:11
In reply to ECT Followup...amazing! (all about it, long), posted by blueberry on November 8, 2006, at 22:36:52
Perhaps the $225 per treatment might be influencing this doctor's belief that it works on everyone he tries it on? Cecilia
Posted by pseudoname on November 9, 2006, at 8:36:31
In reply to Re: ECT Followup...amazing! (all about it, long), posted by cecilia on November 9, 2006, at 2:18:11
Thanks yet again, blueberry. My own med seems to be working again for me (now that I'm taking a proper dose again), but I'm still thinking of ECT. I've really appreciated your accounts, especially about getting the docs to space out your treatments more. That's the way I would want to try it, I'm sure.
BTW, $225 per treatment sounds pretty darn cheap to me, if that includes anesthesia & everything. The last specialist I saw (a pulmonologist) charged $215 for an OFFICE VISIT!
Posted by Phillipa on November 9, 2006, at 17:57:52
In reply to $225 treatments, posted by pseudoname on November 9, 2006, at 8:36:31
And if you have no med insurance in the US your lmonth Rx probably is more. Love Phillipa
Posted by blueberry on November 9, 2006, at 21:16:35
In reply to $225 treatments, posted by pseudoname on November 9, 2006, at 8:36:31
Yeah I didn't think about it, but you're right, that actually is cheap when you put it in perspective. I hadn't thought of it that way. Where it gets expensive though is when there are multiple treatments per week. That's another reason I think putting more space between treatments is a good idea.
Posted by Phillipa on November 9, 2006, at 21:20:57
In reply to Re: $225 treatments » pseudoname, posted by blueberry on November 9, 2006, at 21:16:35
Blueberry but then it's not forever the weekly thing. More space inbetween if you should need more. And someday figure out how to babblemail me. Love Phillipa
Posted by blueberry on November 9, 2006, at 21:27:51
In reply to Re: ECT Followup...amazing! (all about it, long), posted by elanor roosevelt on November 8, 2006, at 23:39:00
> I keep thinking about ECT then I think again -- that I will wait until they fine tune it a bit more. but why are you still on meds?
I think the fine tuning can be done by your doctor along with your feedback.
The meds I'm on are pretty low...10mg prozac and 5mg zyprexa...actually just tonight I reduced the zyprexa to 2.5mg to see. I'm still on meds for several reasons...
Since I was already stable on them we didn't want to rock the boat or introduce any confusing variables.
I wanted some sort of a lifeline in the background once the ECT was stopped, hopefully to prevent or slow down a relapse.
I've been on meds for so many years, over a decade, and it just didn't seem wise to all of a sudden remove them. I will try to wean off of them but be in no hurry to do it.
I have no side effects from them.
Posted by deniseuk190466 on November 10, 2006, at 13:32:27
In reply to ECT Followup...amazing! (all about it, long), posted by blueberry on November 8, 2006, at 22:36:52
Blueberry,
I'm so pleased the ECT has helped you but I am interested in knowing why you never went up to 10mg of Zyprexa or did you?
Thanks...Denise
Posted by blueberry on November 10, 2006, at 19:53:44
In reply to Re: ECT Followup...amazing! (all about it, long), posted by deniseuk190466 on November 10, 2006, at 13:32:27
> Blueberry,
>
> I'm so pleased the ECT has helped you but I am interested in knowing why you never went up to 10mg of Zyprexa or did you?
>
> Thanks...DeniseHi Denise,
Yeah actually I was on 10mg for I don't know how long...a year...two years...something like that. It has been whittled down to 5mg in the last 6 months.
Posted by deniseuk190466 on November 11, 2006, at 12:13:07
In reply to Re: ECT Followup...amazing! (all about it, long) » deniseuk190466, posted by blueberry on November 10, 2006, at 19:53:44
Blueberry,
Sorry to ask so many questions but why did you whittle it down to 5mg.
Also, do you suffer from manic depression and how did you manage to get them to let you try ECT were you not eating or drinking?
I keep getting told I can't have ECT because I'm not indicated for it. I think because I'm managing to get out of bed and I'm still eating and drinking they don't take my depression that seriously.
Denise
Posted by pseudoname on November 16, 2006, at 17:20:09
In reply to ECT Followup...amazing! (all about it, long), posted by blueberry on November 8, 2006, at 22:36:52
> The drawbacks...it costs about $225 each treatment and my insurance only paid half of that...
Just to be clear, $225 might be the administering pdoc's own fee or some other subset of charges. The hospital billing department where I'm considering having ECT done told me that the hospital charges at least $5,000 and sometimes over $9,000 PER TREATMENT. The anesthesiologist and pdoc add their charges on top of that.
Posted by ed_uk on November 19, 2006, at 14:06:43
In reply to cost of ECT -- $$, posted by pseudoname on November 16, 2006, at 17:20:09
>The hospital billing department where I'm considering having ECT done told me that the hospital charges at least $5,000 and sometimes over $9,000 PER TREATMENT. The anesthesiologist and pdoc add their charges on top of that.
What????!!!!!!
Ed
Posted by pseudoname on November 19, 2006, at 16:19:52
In reply to Re: cost of ECT -- $$ » pseudoname, posted by ed_uk on November 19, 2006, at 14:06:43
...to Canada or the UK or almost any other western democracy a long time ago and become a citizen just for the health coverage.
> What????!!!!!!
;-0
This is the end of the thread.
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