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Dr. Bob is Robert Hsiung, MD,
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Posted by Ritch on August 8, 2002, at 23:49:10
In reply to Re:Results of ECT consult..more, posted by Chloe on August 8, 2002, at 17:55:40
>....... We also talked about the possiblity of T3 augmentation before or instead (if it worked) of ECT. But I told my pdoc that I just can't add on another med, or start switching stuff around. Med changes are so hard on me and I feel like I need to get off some meds, not add to the: lithobid, depakote, neurontin, celexa, doxepin, diazapam cocktail. Adding another med on top, when I don't even know what my low doses of all of these meds are doing now, I think is unwise. I think I need to get off the depakote and neurontin and perhaps celexa to see what my mood is really like before adding another med. But I am not sure I can safely go off these meds without ECT to carry me through...
> Can anyone relate to what I am saying????? I don't want to "waste" a potentially good med for me by trying it when I am already on too many meds with too many side effects.....I can relate to that! I have been trying to *reduce* the number of meds that I take with limited success. I am down to DepaKlon and EffexoButrin. :) There always seems to be at least three.. Has your pdoc ever mentioned anything about going off one at a time until you are down to just ONE, and then getting the ECT? Another thing: It seems that you have gotten rather unstable since you made the flip from amitrip. to trimip. (sorry!) and then to doxepin, do you think you were better off on the AMI? You seemed to be the most stable I have ever heard from you just before those last couple of changes. Also, I didn't realize that doxepin's half-life was that short (8 hrs?). I thought since it was another TCA, that it automatically meant *days*. I wonder if that could be the trouble? Do you think you could ever get down to something like lithium + thyroid? From personal experience with most of the antimanics, lithium has got the best antipsychotic activity without the EPS.
more thoughts,
Mitch
Posted by Chloe on August 9, 2002, at 19:04:12
In reply to Re:Results of ECT consult..moreChloe, posted by jaby on August 8, 2002, at 19:05:44
> If you haven't read it already, there is a great book called "Elctroshock". It talks about all aspects of ECT. Conceptually, I think ECT like it makes the most sense of all the available treatments. There are so many cascades of events that take place within the body. With meds, it seems like you might hit a few (and at the same time mess up a few). With Ect it sems like it kind of resets everything-neurotranmitters, ion channels, the endocrine system, etc. I think you had said you had an endocrine problem before. This might even help that.
>
> I hear you about not wanting to do another med. After 5 years of trying, it's just too much for me (even though I keep doing it). This is just my 2 cents, but I wouldn't even think about anything other than the ECT since you've gone this far with it. It sounds like you think it's the right things to do. Whatever you decide, trust yourself and your body's ability to get better.
>
> Since I am in a sense following in your footsteps, please keep me posted as to your progress.
>
> Take care.Thanks for the book tip. My mother is freaking out, so I am glad to a book to recommend. When you say endocrine, do you mean female hormones by any chance?
I have been taking the BCP to control pms etc, but I have started hemmorraging again. I am going to lose it! I am just getting over being very anemic from heavy menstrual bleeding, and here I go again. So I am going to have to stop the pill ASAP, but I am going to fall into a deep depression. It happens everytime. (No more pills or crazy med trials. I want off of them all. My body is so out of wack!) Do you think ECT could help my feminine cycle be more "friendly" and "normal"? (normal=regular, monthly periods that last less than 7 days!)
Thanks Chloe
>
Posted by Chloe on August 9, 2002, at 19:17:02
In reply to Re:Results of ECT consult..more » Chloe, posted by Ritch on August 8, 2002, at 23:49:10
> Has your pdoc ever mentioned anything about going off one at a time until you are down to just ONE, and then getting the ECT?
Mitch
I have to just stop the 125 depakote and taper the neurontin during the treatments. I think I will be on Li and a TCA when it's over oh, and probably valium. My pdoc is a real fan of it for me for some reason...>Another thing: It seems that you have gotten rather unstable since you made the flip from amitrip. to trimip. (sorry!) and then to doxepin, do you think you were better off on the AMI? You seemed to be the most stable I have ever heard from you just before those last couple of changes. Also, I didn't realize that doxepin's half-life was that short (8 hrs?). I thought since it was another TCA, that it automatically meant *days*. I wonder if that could be the trouble?
Ami made me extremely irritable on a daily basis. I was ALWAYS short fused. I like Doxepin much better, the down fall is the short half life. I only get 5 hours sleep, the rest is just tossing around. I wish Dox had the half life of Ami. Dox has a nice antianxiety effect, too, but it wears off so quickly when I get used to the dosage increase.
>Do you think you could ever get down to something like lithium + thyroid?
One could only hope. But my body is so sensitive, I don't think I can get off these meds without some other intervention. The emotional pain is awful and at times I am not safe.>From personal experience with most of the antimanics, lithium has got the best antipsychotic activity without the EPS.
I totally agree.
Thanks
Chloe
Posted by Chloe on August 9, 2002, at 19:25:07
In reply to Re:Results of ECT consult..moreChloe, posted by jaby on August 8, 2002, at 19:05:44
My pdoc called and said that she doesn't want me to have ECT in a local hospital closer to me. That she knows and trusts the ECT doctor and the team in her big teaching hospital. And would not feel comfortable working with someone that she doesn't do it as frequently as Dr. Soandso. That ECT is a sort of "specialty." Is that true? Isn't one ECT doc as good as the next?
any info very appreciated
Chloe
Posted by IsoM on August 9, 2002, at 21:41:32
In reply to Are there ECT specialists???, posted by Chloe on August 9, 2002, at 19:25:07
Posted by Dave1 on August 10, 2002, at 15:29:36
In reply to Are there ECT specialists???, posted by Chloe on August 9, 2002, at 19:25:07
Hi Chloe,
Its Dave again. I don't want to upset you or scare you, but when you go to these ECT specialists, you should remember a few things. This is a business for them. They probably do 10 ECTs a day before 8am, and then see patients all day long after that. Thus, they probably won't spend a particularly large amount of time on your case. You have to be aware of the important ECT stuff yourself, and be sure you talk to the doctor about it. When I had treatments 5 years ago, I knew nothing about ECT, and thus several things were done improperly. I was taking way to much ativan to get adequate seizures, and after the treatments I was not given any maintenance to prevent relapse (and thus I relapsed).
Please remember that you can't have more than 3mg ativan a day (or equiv). Also, for maintenance all the current studies suggest using nortriptyline and lithium as well as maintenance ECTs. You could go to PUBMED and type in ECT for subject and just read over some abstracts. When you go to you ECT doctor again, it might be helpful to bring up some of the points I mentioned, some pubmed stuff that seems important, and some DR-BOB stuff that seems important. If the doctor thinks you are well versed on ECT information, he will likely pay more attention to your case while you are getting treatments.
Dave
Posted by jaby on August 10, 2002, at 16:05:03
In reply to Re:ECT and hormones?..Jaby, posted by Chloe on August 9, 2002, at 19:04:12
I would imagine that it would have some effect (and it sounds like anything would be better than what you're experiencing. I don't know how much you know about the endocrine systems, but it's so complex. The cascades that take place are so complicated and dependent upon one another to function properly. If one step is not working for some reason, then the rest of the line never gets a chance to express itself. These things that don't get expressed could either activate something or downregulate it. That's why I think the meds thing is a little far fetched. I think half the time the meds do one thing right, but at the other time, they'r doing something else wrong. Psychiatry is definitely in the dark ages and having experienced the latest and greatest for the last five years, it's awfully apparent. Barring any miracles, I will likely give the MAOI's a try (nervous about that, but I hear they're quite effective) and if that doesn't work I'll be signing up for ECT. Again, keep us posted of your progress and take care.
Posted by cybercafe on August 14, 2002, at 13:33:27
In reply to Re:ECT and hormones?..Chloe, posted by jaby on August 10, 2002, at 16:05:03
you know what? when i was depressed i used to be so afraid of ECT causing brain damage or something...
but now that i am feeling better i am started to think.... some epileptics must have hundreds of seizures in their lifetimes and they seem okay no??
Posted by jaby on August 14, 2002, at 15:04:54
In reply to Re:ECT , posted by cybercafe on August 14, 2002, at 13:33:27
Makes sense to me. I'm kind of in your same boat i think. I have been up and down so many times, so many meds. I have a decent combo right now, but don't have much faith it will last. It feels really unnatural too.
Posted by Chloe on September 9, 2002, at 18:46:44
In reply to Re:ECT cyber, posted by jaby on August 14, 2002, at 15:04:54
Hi Everyone,
I have had 8 unilateral ECT treatments and I don't really feel that much better. It's nice to be off the antiepileptic drugs, depakote, neurontin, etc, but I am finding I am still quite suicidal...Maybe even more, since I am discouraged that this is not helping dramatically. I still live by myself with no family near by, and few friends in the area. I can't drive or work because I am undergoing ECT. So I don't know, things just seem kinda dismal. I am trying to have a positive and constructive attitude. I just don't understand why I can't shake this mood disorder and get on with my life.The Edoc wants to switch from unilateral to bilateral. I told him I wanted to think about it...I am afraid that I won't be able to live alone if I have bilateral. And I had a woman from an agency stay with me (on my mother's insistance) the night after my first treatment. She stayed awake downstairs while I slept upstairs. And later the next day, I found that 3/4th of my bottle of valium was gone! I couldn't believe it. Of course I don't know for sure that she took it. But no one else was in the house...I was so stupid to leave my meds downstairs. I just couldn't imagine that someone would steal them. Live and learn.
I am so scared that I am not feeling alot better. It must be hard on the body to go to sleep and have a seizure like that. I have had so many infiltrated IV's, huge bruises, sore muscles and headaches from the treatments. I want this to help me so much. How many treatments is a fair trial? Is it reasonable to switch to bilateral now? I wonder if the memory impairment will be dramatically more?
Does anyone have any thoughts?
Thanks,
Chloe
Posted by Phil on September 9, 2002, at 19:32:58
In reply to Re:ECT update, posted by Chloe on September 9, 2002, at 18:46:44
I don't know if doctors should know whether to go with unilateral or bilateral or if it's an educated guess.
Is your doctor very experienced at ECT? And is his team experienced?
If you went with bilateral, would your doctor have an idea how many treatments to do or would he wait to see improvement?
I'm very disappointed for you and hope that whatever decision you make will work. I wonder why your doctor stopped at 8 instead of 12? I just don't know enough about ECT technically to have an educated guess.
If you see that lady again, tell her to go buy you a new script of Valium or you'll kick her butt. :^)Good luck,
Phil
Posted by Dave1 on September 9, 2002, at 21:35:33
In reply to Re:ECT update, posted by Chloe on September 9, 2002, at 18:46:44
Hi,
I think you should try bilateral or bifrontal, they are supposed to work better than unilateral.
You could also take a break and do them in a couple of months.
Dave
Posted by Ritch on September 9, 2002, at 23:04:43
In reply to Re:ECT update, posted by Chloe on September 9, 2002, at 18:46:44
Chloe,
I agree with Dave. Try the bifrontal or bilateral ECT when you get a break. I have also heard that it is considerably more effective. If you are already doing ECT, you may as well try the whole nine yards with it while you are into it.
God bless,
Mitch
Posted by shar on September 11, 2002, at 0:46:15
In reply to Re:ECT update » Chloe, posted by Ritch on September 9, 2002, at 23:04:43
Chloe,
I sure do wish you were having more noticeable success. Has nothing changed for the better, other than being able to be off meds? No noticeable improvement in anything else? I don't want to be Pollyanna (she and I don't get along at all), but I'm wondering.Do you think it might be too soon to be having positive changes? Like you said, it is pretty hard on your body, and along with recuperating from the ECT, your whole system is getting you better (processing the iv's, clearing up the bruises, and all that). Plus, getting an adrenaline rush toward the valium thief. I will help you give her hell, that it just plain cruel. There seems to be a lot of that in health "care" in my humble opinion (I'm thinking of people who go into health care and hurt others by theft or whatever, like in nursing homes, or home health, or whatever--all that was so I don't get blocked because I can't afford another PBC, and I didn't want anyone to think I was pointing a finger at anyone here in particular, because I'm not!). Ssshhheeeeeesshhh!
Back to you, I know nothing about ECT, and I am following your posts closely, because I'm thinking after I run thru the rest of the meds I haven't tried yet, that may be next if I can afford it. And, what D and R said makes sense. If you're gonna do the deed, why not go all the way, do it the way it's supposed to be best; no half measures. But then, what do I know? Really, you are the one who lives with the aftereffects.
I really care that you are feeling crappy and I wish I could take that away. I hope you will find something that makes your day better, and I sure hope you keep posting. Especially if you feel suicidal, I hope you'll post because I deal with a lot of SI, and I can relate to it very well.
Best,
Shar> Chloe,
>
> I agree with Dave. Try the bifrontal or bilateral ECT when you get a break. I have also heard that it is considerably more effective. If you are already doing ECT, you may as well try the whole nine yards with it while you are into it.
>
> God bless,
>
> Mitch
Posted by Chloe on September 11, 2002, at 8:30:09
In reply to Re:ECT update...Chloe, posted by shar on September 11, 2002, at 0:46:15
Thank you everyone who posted and supported me. I am feeling a little better. I think I had that horrible depressive crash because I was having PMS. I have gotten off so many drugs, neurontin, depakote, Yasmin, that my body must be in shock. I was on the birth control pill to regulate my cycles and PMS. I didn't think it was doing too much. But now I am reconsidering. For two days before I got my period I was filled with SI. Not fun.
I am waiting for the cab to take me to my treatment(can't drive). I have no idea what I will have today, unilateral or bilateral. I just know that I want to end these treatments soon. I think the anesthesia or the trauma of it all, is making my hair fall out in clumps. I just can't get a break!
And I have my anxious mother calling me from 800 miles away, pleading with me that I don't have bilateral. What does she know about the subject anyway??? My pdoc thinks bilateral is more effective and definitely worth the risk. I am inclined to agree...
Talk to you on the other side!
ChloeChloe,
> I sure do wish you were having more noticeable success. Has nothing changed for the better, other than being able to be off meds? No noticeable improvement in anything else? I don't want to be Pollyanna (she and I don't get along at all), but I'm wondering.
>
> Do you think it might be too soon to be having positive changes? Like you said, it is pretty hard on your body, and along with recuperating from the ECT, your whole system is getting you better (processing the iv's, clearing up the bruises, and all that). Plus, getting an adrenaline rush toward the valium thief. I will help you give her hell, that it just plain cruel. There seems to be a lot of that in health "care" in my humble opinion (I'm thinking of people who go into health care and hurt others by theft or whatever, like in nursing homes, or home health, or whatever--all that was so I don't get blocked because I can't afford another PBC, and I didn't want anyone to think I was pointing a finger at anyone here in particular, because I'm not!). Ssshhheeeeeesshhh!
>
> Back to you, I know nothing about ECT, and I am following your posts closely, because I'm thinking after I run thru the rest of the meds I haven't tried yet, that may be next if I can afford it. And, what D and R said makes sense. If you're gonna do the deed, why not go all the way, do it the way it's supposed to be best; no half measures. But then, what do I know? Really, you are the one who lives with the aftereffects.
>
> I really care that you are feeling crappy and I wish I could take that away. I hope you will find something that makes your day better, and I sure hope you keep posting. Especially if you feel suicidal, I hope you'll post because I deal with a lot of SI, and I can relate to it very well.
>
> Best,
> Shar
>
>
>
> > Chloe,
> >
> > I agree with Dave. Try the bifrontal or bilateral ECT when you get a break. I have also heard that it is considerably more effective. If you are already doing ECT, you may as well try the whole nine yards with it while you are into it.
> >
> > God bless,
> >
> > Mitch
>
>
Posted by ShelliR on September 11, 2002, at 16:47:16
In reply to Re:ECT update, posted by Chloe on September 9, 2002, at 18:46:44
Hi Chloe,
I was told that frontal bi lateral is not much different in side effects than unilateral. It's the only choice I had for ect at the hospital that does the most treatments near where I live. (I was told that non frontal lateral is harder on the mind and memory.)
ECT, unfortunately, was not at all successful for me, but I stayed in the hospital for ten treatments. It made things a lot easier I think--everything was taken care of for me. And the bifrontal wasn't too bad; I forget a lot from those few weeks, but don't seem to have forgotten other than from that time period. And I beat a lot of patients at scrabble, so my mind wasn't totally disfunctional.
Of course I'm very disappointed at the results, although I think it was a reasonable treatment to try. So I do understand how you must be feeling.
Shelli
Posted by Chloe on September 13, 2002, at 22:24:58
In reply to Re:ECT update » Chloe, posted by ShelliR on September 11, 2002, at 16:47:16
Hi Everyone,
I am happy to report that switching to bilateral ECT has proven to be very effective. (Shellli, I inquired about bifrontal and it's not available at my hospital.) My mood is much improved. I laugh, smile, and am starting to get involved in some things. This is very exciting and fun! I just can't believed I missed the whole summer feeling depressed.
The only downside is that my hair is falling out in handfuls. I don't know if it's from the anesthesias/medications or if my hair is just stressed and is shedding. I've always had long think hair, so this is somewhat difficult. But not a huge deal.
The memory impairment is not too bad. I have to ask more questions about my activities of daily living since changing to bilateral. But right now I think it's kinda funny! And it's such a relief to have a break from the emotional pain and darkness.
I feel very grateful that my pdoc suggested ECT and helped me get connected in a nice outpatient unit. It's really amazing to arrive at 10am, go to sleep, and walk out about 12 noon feeling fine :). I have had 10 treatments, 2 bilateral. I don't know how many more I will have in total. But so far so good!
Yours,
Chloe
Posted by Ritch on September 14, 2002, at 9:50:31
In reply to Re:ECT update, posted by Chloe on September 13, 2002, at 22:24:58
> Hi Everyone,
> I am happy to report that switching to bilateral ECT has proven to be very effective. (Shellli, I inquired about bifrontal and it's not available at my hospital.) My mood is much improved. I laugh, smile, and am starting to get involved in some things. This is very exciting and fun! I just can't believed I missed the whole summer feeling depressed.
> The only downside is that my hair is falling out in handfuls. I don't know if it's from the anesthesias/medications or if my hair is just stressed and is shedding. I've always had long think hair, so this is somewhat difficult. But not a huge deal.
> The memory impairment is not too bad. I have to ask more questions about my activities of daily living since changing to bilateral. But right now I think it's kinda funny! And it's such a relief to have a break from the emotional pain and darkness.
> I feel very grateful that my pdoc suggested ECT and helped me get connected in a nice outpatient unit. It's really amazing to arrive at 10am, go to sleep, and walk out about 12 noon feeling fine :). I have had 10 treatments, 2 bilateral. I don't know how many more I will have in total. But so far so good!
> Yours,
> Chloe
>Wow!, I am glad you are feeling a lot better. I can really see it in your writing. Kind of like a big dark storm has passed and the sun *popped* out. Keep us updated, I didn't realize there were so many individual sessions. Now I know what my grandmother must have went through.. whew!
take care,
Mitch
Posted by Denise528 on September 16, 2002, at 8:06:28
In reply to Re:ECT update, posted by Chloe on September 13, 2002, at 22:24:58
Chloe,
I am so pleased for you. Your notes seem more coherent now too.
Keep us updated with your progress.
Denise
Posted by wsj on September 16, 2002, at 23:25:33
In reply to Re:ECT update » Chloe, posted by Ritch on September 14, 2002, at 9:50:31
chloe,
i'm considering ect for same reason you listed - side effects i can't live with. can you give me some insight on the process and outcome.
Posted by Chloe on September 17, 2002, at 20:28:01
In reply to Re:ECT update, posted by wsj on September 16, 2002, at 23:25:33
> chloe,
>
> i'm considering ect for same reason you listed - side effects i can't live with. can you give me some insight on the process and outcome.Well,
My pdoc and I came to the conclusion that medications really had their limitations with me. And for me to have some relief, I was going to have to explore other options. I was referred to an ECT specialist at my pdoc's hospital. We had an extensive interview where he asked about my history, medication experiences, activities of daily living, support systems, etc (all while getting up periodically from our meeting to shock someone, then he would come back and pick up where he left off!...Not the most professional style, but he seems to be a good ECT doc never the less), all in an attempt to see if I would benefit from ECT.
After the interview, he gave me his impressions and passed his opinions on to my pdoc. As you have gathered, he thought I was a good candidate, since I have had good response to medications, I just can't tolerate the side effects over time. I am so glad I went for ECT. It has helped me get some desire to live back...And the memory impairment, which I find very mild, is almost a blessing at times. Because I don't remember specifically, the knitpicky thing that is causing me so much pain. I can let go of things and move on to something else.
There are also two types of ECT. You can have the electrode placed unilaterally, where it only affects one side of the brain. Hence, usually causing less memory impairment. Though I have just switched to bilateral placement after about 9 treatments. And I don't think the memory impairment is worse. I was afraid to try bilateral, thinking I would forget where my toes were. But by keeping a journal, and making reminders for myself, I feel quite comfortable. Oh, and lastly, if you have a course of ECT, you are not supposed to be by yourself. But my pdoc and the edoc both know that I live by myself, and they have given my permission to be alone at night to sleep. Though I can't drive or work which is standard practice during a course of ECT.
I hope this helps...
Chloe
Posted by Ritch on September 17, 2002, at 23:37:32
In reply to Re:ECT update » wsj, posted by Chloe on September 17, 2002, at 20:28:01
> > chloe,
> >
> > i'm considering ect for same reason you listed - side effects i can't live with. can you give me some insight on the process and outcome.
>
> Well,
> My pdoc and I came to the conclusion that medications really had their limitations with me. And for me to have some relief, I was going to have to explore other options. I was referred to an ECT specialist at my pdoc's hospital. We had an extensive interview where he asked about my history, medication experiences, activities of daily living, support systems, etc (all while getting up periodically from our meeting to shock someone, then he would come back and pick up where he left off!...Not the most professional style, but he seems to be a good ECT doc never the less), all in an attempt to see if I would benefit from ECT.
> After the interview, he gave me his impressions and passed his opinions on to my pdoc. As you have gathered, he thought I was a good candidate, since I have had good response to medications, I just can't tolerate the side effects over time. I am so glad I went for ECT. It has helped me get some desire to live back...And the memory impairment, which I find very mild, is almost a blessing at times. Because I don't remember specifically, the knitpicky thing that is causing me so much pain. I can let go of things and move on to something else.
> There are also two types of ECT. You can have the electrode placed unilaterally, where it only affects one side of the brain. Hence, usually causing less memory impairment. Though I have just switched to bilateral placement after about 9 treatments. And I don't think the memory impairment is worse. I was afraid to try bilateral, thinking I would forget where my toes were. But by keeping a journal, and making reminders for myself, I feel quite comfortable. Oh, and lastly, if you have a course of ECT, you are not supposed to be by yourself. But my pdoc and the edoc both know that I live by myself, and they have given my permission to be alone at night to sleep. Though I can't drive or work which is standard practice during a course of ECT.
> I hope this helps...
> ChloeChloe,
This is the most "stable-sounding" post I think that I have ever read from you! I don't "see" any cognitive problems in your writing at all... Hey, if I ever need to get ECT, I am not going to be afraid of it.
thanks,
Mitch
Posted by colin wallace on September 18, 2002, at 5:07:35
In reply to Re:ECT update » Chloe, posted by Ritch on September 17, 2002, at 23:37:32
Chloe,
So glad to see you're making some real progress-I think it took a lot of guts to go through with that treatment program; your posts will be encouraging to others who may be hesitant in exploring ECT as a treatment option- help remove any stigma that may (wrongly) crop up in people's minds when they consider it.
Hope you get fully well, very soon.Col.
Posted by johnj on September 18, 2002, at 13:35:45
In reply to Re:ECT updateChloe, posted by colin wallace on September 18, 2002, at 5:07:35
Hey Colin,
How is it going? I see you have been finally released from the dungeon. Has working out been going well? Any meds again? Hope things are going well.
Johnj
Posted by jaby on September 18, 2002, at 14:10:39
In reply to Re:ECT update » wsj, posted by Chloe on September 17, 2002, at 20:28:01
Chloe,
You sound amazing. You could always hear a lot of nervousness/tension/despair in your old posts. Now, you sound so stable and level headed. 180 degrees from your posts after your first couple of treatments too. Keep up the good work and of course keep us aprised of your progress.
So happy for you!
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