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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 11 to 35 of 35. Go back in thread:
Posted by Deniseuk190466 on March 21, 2007, at 12:21:34
In reply to Re: ECT, posted by lcat10 on March 19, 2007, at 15:41:06
Hi,
Well I think with the unilateral it can take longer to work (as you probably already know). One lady I wrote to said it took about 8 treatments before she really felt a difference so don't give up.
You are probably feeling bad as well as a consequence of coming off all meds, I know I do.
Keep us updated.Kind Regards...Denise
Posted by lcat10 on March 21, 2007, at 23:06:32
In reply to Re: ECT, posted by Deniseuk190466 on March 21, 2007, at 12:21:34
I don't intend to give up. I think I have backslided some as does Dr. Dinwiddie, the ECT doc. I know this does not mean ECT is not or will not work. I just spent two weeks plus two days on the psych unit at the University of Chicago, and I think I am still trying to get used to being out of the hospital. I have not returned to work. Dr. Dinwiddie says he does not think I should try to work while undergoing ECT. I have some memory problems for things occuring around the time of the ECT treatments. But, I am not forgetting everything. For the most part, I think I am doing okay in that regard.
Posted by linkadge on March 22, 2007, at 19:54:50
In reply to Re: ECT, posted by lcat10 on March 21, 2007, at 23:06:32
If its not working and you feel uneasy for goodness sakes stop doing it. The fewer treatments the less dammage.
Linkadge
Posted by lcat10 on March 22, 2007, at 22:12:26
In reply to Re: ECT, posted by linkadge on March 22, 2007, at 19:54:50
I can't say ECT is or is not working. I have had 6 treatments and tomorrow will be number 7. The only memory problems I have are for some events around the time of the treatments. I apparently talked to my therapist on the phone from the psych unit at the University of Chicago, and I don't remember this. On the other hand I remember last week seeing Dr. Bob when he came up to the psych unit (W-3) for whatever reason. I asked one of the nurses, after he left, if it was him, and she said yes. He was with a couple of other guys. So, re the ECT, I don't think it is doing anything bad to me. I anticipated more memory loss around the time of the treatments than I seem to have. I journal everyday, and going back, I see I have not forgotten much at all.
Posted by lcat10 on March 24, 2007, at 14:56:23
In reply to Re: ECT, posted by lcat10 on March 22, 2007, at 22:12:26
My ECT from the 23rd caused me a few more problems than the previous ones. My ECT doc could not tell me why because it was the other ECT doc who did the treatment. It seems maybe the seizure was slightly longer. All I know is that I felt a lot more confused afterwards. Now the ECT doc who I like, Dr. Dinwiddie, is gone this coming week. In part I am thinking of skipping Monday and just going on Friday to see how that goes. My therapist is also going to be gone until Thursday anyway, and I will see what he has to say.
Posted by stargazer on March 24, 2007, at 17:49:11
In reply to Re: ECT, posted by lcat10 on March 24, 2007, at 14:56:23
Hi Lcat, I'm watching your posts and hoping for your progress with ECT. Have your docs indicted what is the target # of treatments for you at a minimum? maximum? And what # are you at? Have they talked about maintenance treatments following these ones?
Are you having any physical symptoms following the treatments? I know you said you're not working right now, do you think it would have been possible to work during the treatments? If not, why not.
Continued luck with your recovery...Stargazer
Posted by lcat10 on March 24, 2007, at 23:01:56
In reply to Re: ECT/Lcat, posted by stargazer on March 24, 2007, at 17:49:11
I think I could have worked on the days I was not getting treatment, but due to the nature of my work, it could have been dicey. I was in the hospital from March 1st until March 17th. So, of course I was not working. I have not worked the past week either on recommendation of my ECT doc. I have had ECT on March 2, 5, 9, 12, 16, 19, and 23rd. I am scheduled to go back on Monday, March 26th and then on the 30th, and then April 2nd. I do not intend to go on the 26th as I am physically ill with the flu--diarhehea and vomiting and fever. I will try to go on Wednesday and only Wednesday next week. So, as you can see I have had seven ECT treatments. I have not had problems from any of them until this last one (done by the other ECT doc). After this last one I experienced confusion and some disorientation that cleared by today. Still, I did not like the feeling. My regular ECT doc is going to be on vacacation this coming week--another reason to hold off maybe. He thinks the confusion could be due to a longer seizure or to some medication I took the night before (Seroquel). I asked him how many more I would need and reminded him he never answered this question before. His response was: "And I'm not gonna. I also hope you won't need more than 12, but since my crystal ball is in the shop, I can't predict and therefore...won't. As they say: Better to be silent an d be thought a fool than to open one's mouth and confirm it. I would suggest that a more reasonable stance at this time is: No more than 12 if side effects are terrible and response poor--or if response is satisfactory. If in between, play it by ear and make the decision then." So I have had seven and will go for number 8 next week. I should be doing 8 and 9, but as I am ill, I think it will be only number 8 next week.
Could I have worked, I think yes on the days I was not getting treatment. My ECT doc thinks it best that I not work during the time of the ECT's. So, I am not working. My husband does not want me working either during this time.
I have had some minor memory problems around the time of the treatments. And, I have had the aforementioned confusion primarily related to my orientation in space so to speak. I am thinking this may be due to the ECT being Right Unilateral. As far as med's are concerned, I am on no antidepressant medication. This is how they prefer it. I took the Seroquel once, and that is it. Do I think it is helping? The answer to this is that if it is, it is helping only marginally. Some of the people in the hospital thought I looked better. I can't say I feel that much better--i.i., less depressed, but then I am also feeling physically ill. Dr. D, my ECT doc, told me he had one person he did 20 treatments with but added this is rare. He anticipates no more than 12 it seems.
Posted by Deniseuk190466 on March 29, 2007, at 6:14:15
In reply to Re: ECT/Lcat, posted by lcat10 on March 24, 2007, at 23:01:56
Hi,
I was just wondering how the treatments are going??
Denise
Posted by lcat10 on March 30, 2007, at 17:22:10
In reply to To Lcat 10, posted by Deniseuk190466 on March 29, 2007, at 6:14:15
I have terminated ECT treatment. I was hospitalized at University of Chicago for the first five done twice per week and starting on March 2nd. The last two treatments I did as an outpatient and experienced significant and persisting cognitive problems with orientation and perception aside from the amnesia which I expected and was prepared for. Not being able to find my way from point A to Point B even if I have been there a millions times is not okay. Also, having problems with judging distances--slammed into a wall in the parking garage where I work when I went over there on a Saturday. Also can't judge how far down to step off a curbe, etc. Familiar places look strange to me, and I have momentary episodes of feeling like I am back in Topeka or my home town of Moline. It is as if I am whisked back for a moment. Very disconcerting. I am now having problems with concentration and attention that I did not have before. Also problems with insomnia that I did not have before. The memory stuff is disconcerting--to read my journaling and have absolutely no memory of what I wrote about. For example, while in the hospital I went to see the ENT doctor, Dr. Naclerio for a follow-up visit and also went to see Dr. Tasali for follow-up visit for my sleep apnea. I have absolutely no memory of going to see them. These appointments were after my second ECT.
I also felt traumatized by the ECT's in the sense that I had to tell them they had to let me sit up afterwards as laying flat, I could not breathe and apparently got so agitated and delirious after the ECT treatment they had to sedate me. While in the hospital I developed pink eye and also a vaginal infection. I would wet my pants during ECT. I also had to be intubated several times and had to be suctioned out at least one time. My pulmonary problems and the fact that I have had cervical spine surgery added complications in addition to my sleep apnea.
I think that the seven ECT treatments may have helped my depression some but not a lot. I am now being prescribed Desipramine, and hopefully this will work better since the ECT. I am feeling very scared about the persisting disorientation and hope it resolves because other wise it will be difficult for me to do my job. Visuo-spatial disorientation is not funny when it is more intense and persists. Neither are having perceptual distortions that persist. This has made me more emotional and tearful at the drop of a pin. I cannot say it was a good experience. The primary ECT doctor I had was fine, Dr. Dinwiddie, but the other ECT doc did the last treatment that left me with the current and persisting cognitive problems.
lcat10
Posted by deniseuk190466 on March 31, 2007, at 6:42:10
In reply to Re: re ECT, posted by lcat10 on March 30, 2007, at 17:22:10
Hi,
I'm glad to hear the ECT treatments have helped you a little and sorry to hear about the problems you are experiencing. In what way do you think it helped? I hope the problems resolve.
Let us know how you get on with the desipramine, have you taken it before?
Denise
Posted by lcat10 on March 31, 2007, at 20:33:13
In reply to Re: re ECT, posted by deniseuk190466 on March 31, 2007, at 6:42:10
I guess I am a little less depressed and might have been helped more if I had continued with the ECT. I know the ECT doctor who did all but the last treatment with me is expecting me on Monday. He was of a mind that I would need 10-12 treatments, and so next Monday would have been number 10. But he was on vacation this week, and I wasn't about to let the other doctor zap me. I think that for me the worst part of it all was the anesthesia issues and complications. I think I should have had a consult with my pulmonary doctor, Dr. Hall, before starting and with the neurosurgeon who did my cervical spine surgery, Dr. Brown. Their input would have been important.
As far as the disorientation is concerned, it is diminishing. The anterograde amnesia is not yet diminishing. And, I have retrograde amnesia, the extent of which I am not yet sure. How do you know what you don't remember?
No I have never taken desipramine before. I am starting out at 50 mg. for three days and then up to 100 mg. and then blood work. I was on Nortriptylene before, however, and had a severe allergic reation to it--high fever and skin rash with peeling of the skin on my palms. The two medications are similar, and the pharmacist was not so sure about giving it to me given that I am listed as allergic to nortriptylene. We shall see how things go.
> Hi,
>
> I'm glad to hear the ECT treatments have helped you a little and sorry to hear about the problems you are experiencing. In what way do you think it helped? I hope the problems resolve.
>
> Let us know how you get on with the desipramine, have you taken it before?
>
>
> Denise
Posted by lcat10 on April 13, 2007, at 20:33:16
In reply to Re: re ECT, posted by lcat10 on March 30, 2007, at 17:22:10
This is a follow-up. I can say I am about at 90% in terms of not feeling depressed. Yes it would have been nice to be at 100%. My ECT doc agrees with me, though, that it was time to stop as I was beginning to develop some significant cognitive deficits. The disorientation has almost entirely resolved. The anterograde amnesia is improving. The retrograde amnesia is more extensive than I would have thought would happen. It includes not only much of what occured around the time of the ECT, but for whatever reason I seem to have no memory of 1998-2003, And yet, I can remember being in the recovery room and talking to the ECT doc and the anesthesiology people and nurses, etc. Very strange. I met with my ECT doc yesterday to talk about things, and he was interested in what has happened. I have also deveoloped a noxious olfactory hallucination. He had not heard of this and was surprised when I told him I knew of around 4 or 5 people who also had this happen to them after ECT. We are going to meet again in a month to see where things are.
My only concern is that there are some people on the ECT board who want me to believe my ECT doc lies to me, and want me to think I have been duped into thinking I am doing better with depression. They are giving me a worse headache than I ever got from the ECT.
lcat10
Posted by Deniseuk190466 on April 16, 2007, at 7:52:02
In reply to Re: re ECT, posted by lcat10 on April 13, 2007, at 20:33:16
Hi,
I'm really glad that you are 90% improved, it gives me hope that if the worst comes to the worst it might help someone like me (if it was ever offered to me). It seems like you are better now than you were initially after the ECT treatments had finished. Would you say you'd had a delayed reaction or do you think it's the new AD you are taking?
I have seen your posts on the ECT site and the people on there do generally as a rule seem very anti-ect but then they've had very bad experiences of it. It is unfair though for them to question your own good experiences of it and of them to ask you to doubt yourself.
Denise
Posted by Phillipa on April 16, 2007, at 19:26:54
In reply to Re: re ECT, posted by Deniseuk190466 on April 16, 2007, at 7:52:02
Denise it's very mean I agree. Love Phillipa. I'd like to think if all else failed at my age it would be an option. Love Phillipa
Posted by Denise190466 on April 17, 2007, at 12:39:38
In reply to Re: re ECT, posted by lcat10 on April 13, 2007, at 20:33:16
Hi again,
What I don't get is why I'm not even given the option of trying ECT. My pscyhiatrist keeps telling me it doesn't work for my kind of depression which is dysthymic with double depression and anxiety on top. I've been on this drug merry go round (and I'm happy to keep trying medications) but I would really like the option of trying every tool available. She also said that it would probably work for about four weeks and then I'd be back in the doldroms again. But this isnt the case for many.
How is my case different from yours would you say. Maybe I'm just deluding myself that ECT would be a quick fix but all I'm hoping for is that it would maybe, somehow help these medications that I am taking to work better.
Denise
Posted by Denise190466 on April 17, 2007, at 12:40:40
In reply to Re: re ECT » Deniseuk190466, posted by Phillipa on April 16, 2007, at 19:26:54
Hi Phillipa,
Have you ever asked your Doctor about whether or not you could try ECT?
Denise
Posted by Phillipa on April 17, 2007, at 20:21:21
In reply to To Phillipa, posted by Denise190466 on April 17, 2007, at 12:40:40
Denise said my anxiety would not go away?????Love Phillipa
Posted by Deniseuk190466 on April 23, 2007, at 6:01:52
In reply to Re: To Phillipa » Denise190466, posted by Phillipa on April 17, 2007, at 20:21:21
Hi Phillipa,
I would have thought that if the anxiety is associated with depression and the ECT lifts the depression then it would also help the anxiety.
But I don't really know anything anymore. I wish I did. I wish the experts did.
Denise
Posted by Deniseuk190466 on April 23, 2007, at 6:03:38
In reply to To Lcat, posted by Denise190466 on April 17, 2007, at 12:39:38
Hi Lcat,
Are you still about. Are you still feeling 90% better?
Denise
Posted by lcat10 on April 24, 2007, at 22:54:34
In reply to Re: To Lcat, posted by Deniseuk190466 on April 23, 2007, at 6:03:38
I am now four weeks post ECT, and I am on an antidepressant. I am not doing very well at all. I have begun to feel very depressed again, and I am suffering all the syptoms one might see with someone who has a closed head injury--not ony retrograde amnesia which I can live with but anterograde amnesia. I cannot take in anything new, process it, and store it in long term memory. I have virtually not ability to concentrate and attend. I cannot read something and retain it in memory. My working memory is shot. I am having a difficult time doing my job. I cannot say I would ever do ECT again. I was not so aware of the deficits until I got past the more acute stage of cognitive impairment. I do not think I could recommend ECT for anyone. Blueberry was right; I should have listened to him. I now seem to also have a seizure disorder that may be a consequence of the ECT. Neurological tests are still being done. Had an MRI with enhancement the other day and am doing a48 hour videotaped EEG plus blood work. Five years ago MRI and EEG's were normal.
Posted by deniseuk190466 on April 26, 2007, at 13:00:29
In reply to Re: To Lcat » Deniseuk190466, posted by lcat10 on April 24, 2007, at 22:54:34
Karen,
I'm really sorry to see that you are not doing so well. Hope the problems with your memory will go away and I hope your depression lifts.
I don't understand it because I thought that Unilateral ECT caused much less memory problems than bilateral ECT.
Were you not aware of these problems whilst having the ECT? Do you think maybe the drug you are now taking is causing any of these problems.
Posted by lcat10 on April 28, 2007, at 12:12:47
In reply to Re: To Lcat, posted by deniseuk190466 on April 26, 2007, at 13:00:29
I journaled daily during ECT, and on one of the days I wrote about the disorientation and confusion, but it did not seem to bother me other than being anxious about the anesthesia part. Also, when you are in the hospital, you don't have as complex an environment to deal with. So, I only started to be more acutely aware of the problems with the last two I did as an outpatient. I had RUL, yes, but at 5 times the seizure threshold level. I was told during the ECT (per my journals) that the cognitive side effects were cumulative. It varies from person to person. You just don't know. Some things are getting better for me, but some are not. It feels like my brain is Swiss cheese, has holes in it. Doctor wanted to do bilateral at 100% charge which is 504 coloumbs if I had not had so much of a problem. I hope I would have had the sense to say no, but who knows.
The desipramine is a separate problem. I have urinary retention, blurred vision, very dry mouth, headache and what me partial complex seizures. I don't want to take this med, and I am concerned my pdoc will not want to work with me anymore if I say this. Only when I have done what he wanted me to do, has he been okay. This is not the kind of relationship I want with a psychiatrist, and so I am looking at seeing someone else who I meet with next Friday.
Posted by Deniseuk190466 on April 30, 2007, at 6:54:19
In reply to Re: To Lcat » deniseuk190466, posted by lcat10 on April 28, 2007, at 12:12:47
Hi Karen,
I must admit that my reasons for wanting ECT to work for you were selfish. I thought if it worked for you then maybe it would work for me but then once you become hard to treat it then becomes a crap shoot as to what will work for who.
Were you consulted about how high you wanted to go with the ECT.Are you working now and would you say that you are now as depressed as before you had the ECT.
I know what you mean about psychiatrists who are only ok with you as long as you do as they tell you to. I have had that problem really. I was seeing a psychiatrist on the NHS and because I was sort of asking him to prescribe certain things I became sort of know as somebody who wanted to control things too much. I'm now seeing another psychiatrist (who he referred me to) on the NHS and I'm sort of having to behave myself (as to going along with what she says) because I'm worried that if I don't then she will refuse to treat me. She has already implied this.
It makes me feel like a sort of naughty schoolgirl.The problem is now with psychiatry is that they really don't know what they are doing when it comes to Treatment Resistant Depression, well I don't feel as though they do. This is not any fault of theirs it's just that there is no scientific art to it because they don't truly know what causes depression/anxiety and so they are really shooting in the dark.
Are you still taking the Seroquel and is the disipramine making things worse for you depression wise or is it the physical side effects that you can't handle? Do you have any ideas as to what medication you want to try?
Anyway, I hope your memory starts to improve soon and most of all the depression. If you find something that works be sure to let everyone know.
Denise
Posted by lcat10 on May 1, 2007, at 11:46:05
In reply to Re: To Lcat, posted by Deniseuk190466 on April 30, 2007, at 6:54:19
Posted by lcat10 on May 1, 2007, at 20:53:59
In reply to Re: To Lcat, posted by Deniseuk190466 on April 30, 2007, at 6:54:19
Sorry; I don't know what happened, but the message did not get included. Denise; I have had to go off of the desipramine as I am having an allergic reaction. Have not taken it since Sunday evening. I only took seroquel once during the time I was doing ECT. I no longer take it. So, for now I am on no psychotropic medications. I have had success in the past with Parnate, and so maybe it would be worthwhile trying that again or Emsam again or maybe something I have never tried such as Nardil.
I have gone back to work with some minimal problems. I am not as depressed as prior to ECT, but part of this is due to memory deficits. I cannot remember lots of things two days later. Only my journaling helps me remember.
This is the end of the thread.
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