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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 10 to 34 of 50. Go back in thread:
Posted by PhoenixGirl on November 23, 2001, at 15:18:06
In reply to Re: Update- My experience with ECT, posted by SLS on November 20, 2001, at 17:16:07
SLS, it sounds like the ECT helped, why didn't you keep getting it done on a maintenance basis? That's when you get it done at first once a week for a month, then every 10 days for a month, then every 2 weeks for a month, and then once a month for who knows how long. I'm going to ask my doctor for this. In the past couple of days, I've had some dark times and less of the wellbeing I described, but this could be from PMS. I'll know in a few days when my period starts, I'll see if I feel better then. I still feel a lot better than before the ECT, it's just that the last few days have been yuck. There's no way I'll accept going back to my pre-ECT days, I'll either keep getting ECT or I'll try Transcranial Magnetic Stimulation. If those things fail, I may try some more meds, but I haven't had much luck with meds. Anyway, why didn't you do maintenance ECT? Oh, and as to right or left, I think it was the right side --- seems like that's where the jelly stuff was on my head when I woke up afterwards. I'm not sure though.
> Hi PhoenixGirl.
>
> I am so glad that things have worked out so well for you. I remember what it felt like to have my depression go away for a few months. I couldn't believe how easy everything was. Yes, I did feel lighter. It was fun to be alive.
>
> > So I must say that my experience has been good, and I would recommend ECT to anyone with treatment resistant depression. I think that the degree of side effects you get depends on how many treatments you get and if they're uni- or bi-lateral. All mine were unilateral, and I didn't get a lot of them. Share you're thoughts or questions, I'd like to hear them.
>
> Were your treatments on the left or right?
>
>
> - Scott
Posted by PhoenixGirl on November 23, 2001, at 15:23:55
In reply to Re: Update- My experience with ECT » PhoenixGirl, posted by Adam on November 21, 2001, at 12:28:33
Hi Adam. Yes sometimes I've felt kind of weird. It is hard to describe, and it's not a bad feeling, just a weird one. I guess maybe it's because I am so not used to feeling alright, it's like a new experience for me. To me, life equaled suffering, so to not suffer anymore....I just don't know what to make of living in wellness. I hope that I can keep getting maintenance ECT, or whatever treatment to sustain this effect, and eventually feeling good will seem natural and feeling bad will be the unusual feeling. Adam, let's play 20 questions! : When did you get ECT, how many did you get, bilateral or unilateral, are you still depressed, why haven't you done maintenance ECT?
> Hey, PhoenixGirl,
>
> I remember you mulling over the prospects of seeking ECT a while ago, and I'm glad you found a way to get treated. Your experiences resemble my own in many ways, most gratifyingly, the quick response and relief from depression. It's amazing, isn't it.
>
> I'm just wondering: Have you had, at times, a strange feeling, sort of like things were a bit unreal? I find it very difficult to describe this sensation, so I may not be doing a good job of being clear in my question. It seemed to be something, perhaps not unconnected to, but still somehow qualitatively different from, the amnesia. I just felt, well, weird sometimes. It wasn't really disturbing, and I didn't feel drugged or cloudy or anything like that. I've described it before as a sense that I was a "stranger in a strange land" even though I consciously recognized my surroundings as being ordinary and familiar. At a deeper level, things just didn't strike me that way. I would walk down on along the Esplanade by the river (I was in Boston) quite literally because being there seemed to evoke this perception more than other places, and I found it intriguing.
>
> Well, again, I'm not sure if I'm making sense here. I'm guessing if you've felt this way, you will know what I mean. I'm very interested to know if what I felt is a common phenomenon associated with (perhaps intense courses of) ECT, and, if so, how others would describe their experiences.
>
> > Hi everybody. A lot of you might remember me posting on here awhile ago about ECT for my treatment-resistant depression. Well, I went into the hospital about a month ago to begin the treatment. My experience with it is very good, and it works better than anything I've ever tried. First I got three treatments a week for two weeks, and then one more a week later, for a total of 7 treatments. That last one was about a week ago. Seven is a low number of treatments, but they helped a lot. In fact, I'm going to ask my doctor if I can do maintenance ECT (where you go once a month to maintain the effect of the initial intense round), and stop taking medication perhaps. The every-present grip of depression has loosened majorly for the first time since my illness started at age 12 (I'm 23 now). It's hard to describe. I just feel lighter, I like myself more, I'm more comfortable socially, I feel more hopeful, and sometimes I even feel pleasant. It used to take something really good happening to make me feel pleasant, but now I sometimes just feel pleasant going about my day. There is still emotional pain, but it's not as intense and all-consuming. When I feel despair, it's usually about something that's going on in my life, it isn't the usual way I feel anymore. There are a lot of issues in my life that would cause anyone to feel despair, such as poor family relations, bad job, few friends, and permanent vision damage due to my eyes being cut and burned (aka Lasik). But this is the first time in 11 years that I feel I could be making a turn-around. I fear that this effect will wear off, though, and I could be right back in the mess I was in. That's why I will insist on maintenance ECT.
> > As for the side effects of ECT, they aren't very bad. There's spotty memory loss in the hours around the treatment. In the two weeks of the acute phase of treatment and for a short time after that, I would forget that I told someone something and tell them again. Or I couldn't remember how to get to the mall or someplace. But that goes away. People I've spoken with who get maintenance ECT have said that there is very little to no memory problems during maintenance. You're getting treatments less frequently then.
> > So I must say that my experience has been good, and I would recommend ECT to anyone with treatment resistant depression. I think that the degree of side effects you get depends on how many treatments you get and if they're uni- or bi-lateral. All mine were unilateral, and I didn't get a lot of them. Share you're thoughts or questions, I'd like to hear them.
Posted by PhoenixGirl on November 23, 2001, at 15:25:58
In reply to Re: Update- My experience with ECT » PhoenixGirl, posted by shelliR on November 22, 2001, at 12:27:12
Thanks shelli, that gives me a nice warm feeling. I'm definitely going to keep posting updates and will look into pbabble tips.
Hi Phoenix Girl.
>
> I do remember some of your previous posts: you shared some sombering feelings after your move to Altanta.
>
> I admire you so much: you looked at your life at age 23 and realized that you didn't want to continue to live this way --from age 12 to 23 is a f**king long time :-( . You considered options, explored them in depth and then totally totally went for it. You took a chance which obviously paid off.
>
> I am so happy for you and so grateful that you shared your experiences with us. It is a incredibly generous act to come back to the board and share in the depth that you did. I think many people are going to be helped by this, realizing how ECT has changed, especially unilateral. In your experience, ECT had a small effect on your memory, compared to the tremendous effect on your happiness.
>
> If you have the time, energy and inclination, you might write up something for psychobabble tips. (I'm not sure of the protocol--whether you have to ask Dr. Bob first). If not,this post remains as a testimony for courage. Thanks.
>
> Shelli
>
>
> > So I must say that my experience has been good, and I would recommend ECT to anyone with treatment resistant depression. I think that the degree of side effects you get depends on how many treatments you get and if they're uni- or bi-lateral. All mine were unilateral, and I didn't get a lot of them. Share you're thoughts or questions, I'd like to hear them.
Posted by PhoenixGirl on November 23, 2001, at 15:27:50
In reply to brain damage from ECT, posted by adamie on November 22, 2001, at 15:23:52
I'm sorry that you have had such a negative experience adamie. Can you please tell us how many treatments you got, and if they were uni- or bilateral? And, I can't tell whether you meant to say you had them one and a half months ago, or fifteen months ago.
> hi. I got ECT more than 1.5 months ago. I didn't deal with any of that confusion stuff some people say could happen. Maybe the ECT helped my severe not usual depression a little but it was extremely far from me feeling like I can live my life again.
>
> Ever since the ECT my memory has been extremely damaged. I often feel like I have no past. I cant remember ANYTHING. Only small bits and pieces occasionally. It effects everything. I have been talking with my ex-fiance for 1 year or more and I cant remember anything at all. Only now since being off meds do I occasionally remember little things once again but then my mind goes blank and I cant remember anything once again.
>
> Also it is extremely hard for me to think and concentrate but part of that is caused by the depression but perhaps ECT made it worse. I dont remember. My mind is not as capable as it was before. The depression itself has caused my memory to be much worse but before the ECT it was much much much better. I could remember many things regarding me and my fiance.
>
> Maybe much of this ECT effect will go away in time. Regardless of my extremely horrible memory... I am willing to try ECT again simply because maybe it helped a little. But it certainly wasn't too noticable for me. Then I was put on celexa and my depression has turned from not too horrible to extremely severe. I have actually felt suicidal sometimes.
>
> And do the negative effects of ECT go away in some months or not?
Posted by PhoenixGirl on November 23, 2001, at 15:34:02
In reply to Re: Update- My experience with ECT » PhoenixGirl, posted by Rudiger on November 22, 2001, at 23:47:14
Well, I don't really know what the difference is between atypical and melancholic. Can you please explain? Throughout my depression, I've had incredibly bad fatigue and a sense of heaviness, but have not overeaten. Depression reduces my appetite. No meds have worked well for me, but they have kept me alive. Right now I'm taking desipramine, which works better than the others I've tried. I've tried imipramine, zoloft, serzone, effexor, clomipramine, wellbutrin, trazadone, celexa, remeron, and desipramine. I've tried some combinations of these and have tried adding lithium, thyroid, and stimulants. Right now I'm on desipramine, wellbutrin, and synthroid. Every med I've ever tried has had intolerable side effects, but the totally untreated depression is even worse than the side effects.
Thanks for sharing your experiences with us. Was your depression more "atypical" (sleeping and eating a lot, heaviness in your arms and legs, rejection sensitiviy, some mood variation) or was it more "melancholic"? What meds (if any) had you responded to for any length of time before the ECT? Thanks in advance for your response.
>
>
> > Hi everybody. A lot of you might remember me posting on here awhile ago about ECT for my treatment-resistant depression. Well, I went into the hospital about a month ago to begin the treatment. My experience with it is very good, and it works better than anything I've ever tried. First I got three treatments a week for two weeks, and then one more a week later, for a total of 7 treatments. That last one was about a week ago. Seven is a low number of treatments, but they helped a lot. In fact, I'm going to ask my doctor if I can do maintenance ECT (where you go once a month to maintain the effect of the initial intense round), and stop taking medication perhaps. The every-present grip of depression has loosened majorly for the first time since my illness started at age 12 (I'm 23 now). It's hard to describe. I just feel lighter, I like myself more, I'm more comfortable socially, I feel more hopeful, and sometimes I even feel pleasant. It used to take something really good happening to make me feel pleasant, but now I sometimes just feel pleasant going about my day. There is still emotional pain, but it's not as intense and all-consuming. When I feel despair, it's usually about something that's going on in my life, it isn't the usual way I feel anymore. There are a lot of issues in my life that would cause anyone to feel despair, such as poor family relations, bad job, few friends, and permanent vision damage due to my eyes being cut and burned (aka Lasik). But this is the first time in 11 years that I feel I could be making a turn-around. I fear that this effect will wear off, though, and I could be right back in the mess I was in. That's why I will insist on maintenance ECT.
> > As for the side effects of ECT, they aren't very bad. There's spotty memory loss in the hours around the treatment. In the two weeks of the acute phase of treatment and for a short time after that, I would forget that I told someone something and tell them again. Or I couldn't remember how to get to the mall or someplace. But that goes away. People I've spoken with who get maintenance ECT have said that there is very little to no memory problems during maintenance. You're getting treatments less frequently then.
> > So I must say that my experience has been good, and I would recommend ECT to anyone with treatment resistant depression. I think that the degree of side effects you get depends on how many treatments you get and if they're uni- or bi-lateral. All mine were unilateral, and I didn't get a lot of them. Share you're thoughts or questions, I'd like to hear them.
Posted by adamie on November 23, 2001, at 16:30:37
In reply to please elaborate adamie, posted by PhoenixGirl on November 23, 2001, at 15:27:50
one and a half months ago. bilateral. or maybe bifrontal. it was 6 treatments
> I'm sorry that you have had such a negative experience adamie. Can you please tell us how many treatments you got, and if they were uni- or bilateral? And, I can't tell whether you meant to say you had them one and a half months ago, or fifteen months ago.
>
>
> > hi. I got ECT more than 1.5 months ago. I didn't deal with any of that confusion stuff some people say could happen. Maybe the ECT helped my severe not usual depression a little but it was extremely far from me feeling like I can live my life again.
> >
> > Ever since the ECT my memory has been extremely damaged. I often feel like I have no past. I cant remember ANYTHING. Only small bits and pieces occasionally. It effects everything. I have been talking with my ex-fiance for 1 year or more and I cant remember anything at all. Only now since being off meds do I occasionally remember little things once again but then my mind goes blank and I cant remember anything once again.
> >
> > Also it is extremely hard for me to think and concentrate but part of that is caused by the depression but perhaps ECT made it worse. I dont remember. My mind is not as capable as it was before. The depression itself has caused my memory to be much worse but before the ECT it was much much much better. I could remember many things regarding me and my fiance.
> >
> > Maybe much of this ECT effect will go away in time. Regardless of my extremely horrible memory... I am willing to try ECT again simply because maybe it helped a little. But it certainly wasn't too noticable for me. Then I was put on celexa and my depression has turned from not too horrible to extremely severe. I have actually felt suicidal sometimes.
> >
> > And do the negative effects of ECT go away in some months or not?
Posted by SLS on November 23, 2001, at 17:57:15
In reply to maintenance, and also a question for SLS, posted by PhoenixGirl on November 23, 2001, at 15:18:06
Dear PG,
Thanks for responding.
> SLS, it sounds like the ECT helped, why didn't you keep getting it done on a maintenance basis?
In 1991, I received a series of 15 ECT treatments using a schedule of 3 treatments per week. My first 10 or so were unilateral left. The rest were bilateral. I experienced a mild improvement after the fifth treatment that lasted for a few hours. After that, nothing.
> That's when you get it done at first once a week for a month, then every 10 days for a month, then every 2 weeks for a month, and then once a month for who knows how long. I'm going to ask my doctor for this.
The great majority of people who respond well to ECT will relapse within a few months if no other treatment is used for prophylaxis. This isn't really so different from someone discontinuing a drug once they begin to feel better. They will most likely relapse too. Therefore, maintenance treatments are pretty much a given for people who have had a history of recurrent depressive episodes. It's great that the unilateral treatments are doing the trick. Unless a high dosage (current) is used, memory and cognitive disturbances are significantly less using unilateral versus bilateral.
> There's no way I'll accept going back to my pre-ECT days,
I can relate.
> I'll either keep getting ECT or I'll try Transcranial Magnetic Stimulation.
Where would you go for TMS? Is anyone using it outside an investigational setting? Can you be guarranteed indefinite access to treatment?
There are several different methods of rTMS being studied. The rate of success with the early trials were disappointing. I haven't kept up with it, but I believe there are differences in the intensity of the magnetic field, the frequency of the pulse, and the placement of the magnetic coil. Please let us know what you find out along the way. One person who has a lot of experience with rTMS is Dr. Mark S. George, who I believe is still working at the Medical University of South Carolina (MUSC). He also works with VNS (Vagus Nerve Stimulation).
> If those things fail, I may try some more meds, but I haven't had much luck with meds. Anyway, why didn't you do maintenance ECT? Oh, and as to right or left, I think it was the right side --- seems like that's where the jelly stuff was on my head when I woke up afterwards. I'm not sure though.
I didn't go for maintenance treatments because there was nothing to maintain. After my 15th treatment, I felt no better than I had before the first.
At the time of my treatments, it was standard to place the electrodes on the left side. Now, I think most practicioners choose to apply them to the right side. By contrast, I think rTMS is currently being applied to the left side.
> In the past couple of days, I've had some dark times and less of the wellbeing I described, but this could be from PMS. I'll know in a few days when my period starts, I'll see if I feel better then. I still feel a lot better than before the ECT, it's just that the last few days have been yuck.
That sounds yucky.
> If those things fail, I may try some more meds, but I haven't had much luck with meds.
I really don't know what the current practices are regarding the use of medication in conjunction with ECT. For instance, can someone respond to a drug after receiving ECT that they had failed to respond to previously? Can medication replace maintenance treatments? Is someone's chances of responding to ECT greater if they are taking medication at the same time?
One way or another, it sounds like you found an effective treatment for yourself. That's worth a smile! I'm so happy for you.
Take care.
- Scott
Posted by Anna P. on November 23, 2001, at 18:56:27
In reply to Re: maintenance, and also a question for SLS » PhoenixGirl, posted by SLS on November 23, 2001, at 17:57:15
>Scott, why don't you consider the Vagus Nerve Stimulation, if cost is not a problem. It's done right now in Canada.
Anna P.
> In 1991, I received a series of 15 ECT treatments using a schedule of 3 treatments per week. My first 10 or so were unilateral left. The rest were bilateral. I experienced a mild improvement after the fifth treatment that lasted for a few hours. After that, nothing.
>
> > That's when you get it done at first once a week for a month, then every 10 days for a month, then every 2 weeks for a month, and then once a month for who knows how long. I'm going to ask my doctor for this.
>
> The great majority of people who respond well to ECT will relapse within a few months if no other treatment is used for prophylaxis. This isn't really so different from someone discontinuing a drug once they begin to feel better. They will most likely relapse too. Therefore, maintenance treatments are pretty much a given for people who have had a history of recurrent depressive episodes. It's great that the unilateral treatments are doing the trick. Unless a high dosage (current) is used, memory and cognitive disturbances are significantly less using unilateral versus bilateral.
>
> > There's no way I'll accept going back to my pre-ECT days,
>
> I can relate.
>
> > I'll either keep getting ECT or I'll try Transcranial Magnetic Stimulation.
>
> Where would you go for TMS? Is anyone using it outside an investigational setting? Can you be guarranteed indefinite access to treatment?
>
> There are several different methods of rTMS being studied. The rate of success with the early trials were disappointing. I haven't kept up with it, but I believe there are differences in the intensity of the magnetic field, the frequency of the pulse, and the placement of the magnetic coil. Please let us know what you find out along the way. One person who has a lot of experience with rTMS is Dr. Mark S. George, who I believe is still working at the Medical University of South Carolina (MUSC). He also works with VNS (Vagus Nerve Stimulation).
>
> > If those things fail, I may try some more meds, but I haven't had much luck with meds. Anyway, why didn't you do maintenance ECT? Oh, and as to right or left, I think it was the right side --- seems like that's where the jelly stuff was on my head when I woke up afterwards. I'm not sure though.
>
> I didn't go for maintenance treatments because there was nothing to maintain. After my 15th treatment, I felt no better than I had before the first.
>
> At the time of my treatments, it was standard to place the electrodes on the left side. Now, I think most practicioners choose to apply them to the right side. By contrast, I think rTMS is currently being applied to the left side.
>
> > In the past couple of days, I've had some dark times and less of the wellbeing I described, but this could be from PMS. I'll know in a few days when my period starts, I'll see if I feel better then. I still feel a lot better than before the ECT, it's just that the last few days have been yuck.
>
> That sounds yucky.
>
> > If those things fail, I may try some more meds, but I haven't had much luck with meds.
>
> I really don't know what the current practices are regarding the use of medication in conjunction with ECT. For instance, can someone respond to a drug after receiving ECT that they had failed to respond to previously? Can medication replace maintenance treatments? Is someone's chances of responding to ECT greater if they are taking medication at the same time?
>
> One way or another, it sounds like you found an effective treatment for yourself. That's worth a smile! I'm so happy for you.
>
> Take care.
>
>
> - Scott
Posted by Rudiger on November 24, 2001, at 1:01:55
In reply to Re: Update- My experience with ECT Rudiger , posted by PhoenixGirl on November 23, 2001, at 15:34:02
Thanks for answering my questions, PhoenixGirl.
Atypical depression is characterized by a combination of mood reactivity (i.e., the ability to experience at least a small lift in mood in response to favorable events), a strong craving for sugary foods, oversleeping, chronic exhaustion and a severe heaviness in the limbs/body, and a chronic oversensitivity to interpersonal rejection. Despite its name, people with atypical depression represent the largest subgroup of depressives. People with melancholic depression are usually not able to experience any lift in mood, have a great deal of difficulty getting any sleep, don't have any desire to eat and also experience chronic exhaustion.
How many hours of sleep did you average before having ECT and how many do you get now? Which subtype of depression do you think fits you better?
The reason this is important to me is that there seems to be a rumor that people with atypical depression (which is what I have) don't respond very well to ECT (although I've never found any hard data on this). On the other hand, people with atypical depression supposedly don't respond very well at all to tricylics. Since I've responded to both desipramine and nortriptyline, maybe I do have some chance of responding to ECT.
It always gives me a little hope when one of us manages to make it out of this abyss. I hope your recovery stays strong.
> Well, I don't really know what the difference is between atypical and melancholic. Can you please explain? Throughout my depression, I've had incredibly bad fatigue and a sense of heaviness, but have not overeaten. Depression reduces my appetite. No meds have worked well for me, but they have kept me alive. Right now I'm taking desipramine, which works better than the others I've tried. I've tried imipramine, zoloft, serzone, effexor, clomipramine, wellbutrin, trazadone, celexa, remeron, and desipramine. I've tried some combinations of these and have tried adding lithium, thyroid, and stimulants. Right now I'm on desipramine, wellbutrin, and synthroid. Every med I've ever tried has had intolerable side effects, but the totally untreated depression is even worse than the side effects.
>
Posted by SLS on November 24, 2001, at 8:37:40
In reply to R a question for SLS, posted by Anna P. on November 23, 2001, at 18:56:27
Hi Anna.
>Scott, why don't you consider the Vagus Nerve Stimulation, if cost is not a problem. It's done right now in Canada.
Really? Has VNS been approved for depression in Canada by any regulatory agency?
Unfortunately, cost is an issue. I think VNS costs between 15 and 20 thousand dollars. In the US, the FDA is responsible for approving medical devices as well as drugs. Currently, it has approved VNS for epilepsy, but not depression. Under this circumstance, most medical insurance policies won't pay for it to treat depression. I am dependent on Medicare, the national medical plan for the elderly and disabled. I guess I should check to make sure, but I don't think Medicare would cover me for VNS.I have been thinking more about it recently. I guess I have a problem with implanting a device in my chest and routing wires through my neck and connecting them to a nerve - just to see whether or not it works! But I know that if it were to work, I'd be prancing around merrily, picking wild flowers, and praising the virtues of Cyberonics' brain pace-makers.
What's been going on with you?
- Scott
Posted by Neal on November 25, 2001, at 23:58:48
In reply to Update- My experience with ECT, posted by PhoenixGirl on November 20, 2001, at 16:53:36
Here's a nuts-and-bolts question; what does ECT cost?
Posted by henryO on November 28, 2001, at 5:27:53
In reply to Re: Update- My experience with ECT (re:Adam's post, posted by PhoenixGirl on November 23, 2001, at 15:23:55
PhoenixGirl, Thank you so much for passing on your experiences with ECT it helps more than you know. Please continue to post as you do the maintenace phase. I am, and I suspect others are, watching and learning and taking heart from your experiences.
Posted by Anna P. on November 28, 2001, at 14:51:42
In reply to Re: R a question for SLS » Anna P., posted by SLS on November 24, 2001, at 8:37:40
> Hi Anna.
>
> >Scott, why don't you consider the Vagus Nerve Stimulation, if cost is not a problem. It's done right now in Canada.
>
> Really? Has VNS been approved for depression in Canada by any regulatory agency?
>
Yes, VNS has been approved as a treatment for depression in Canada.>
> Unfortunately, cost is an issue. I think VNS costs between 15 and 20 thousand dollars. >That's true, VNS is expensive, but did you know there wil be a study around the spring at MUSC at North Carolina. I spoke with the nurse over there.
What's been going on with you?
>
>
I'm in a big dispair. Currently I'm on Reboxetine and Stelazine, but they don't work for my anergy. I have no more medications to try, and those that I tried in the past don't work anymore. I developed a resistence to them.I was in Atlanta to get some TMS, but I had to come back because my meds stopped working and my depression got worse.
I had only four sessions, but now I'm very sceptical whethet TMS works at all.
How are you doing, Scott?Anna P.
Posted by PhoenixGirl on November 28, 2001, at 15:49:58
In reply to Re: R a question for SLS, posted by Anna P. on November 28, 2001, at 14:51:42
I'll try to answer the questions that people asked in one post, if I can remember them all. About what kind of depression I have -- the description of atypical sounds more like me. But it depends on what med I'm on. When I've tried to go off meds, I can't sleep, don't want to eat, and can't feel good about anything. When I'm on most meds, I crave sweets, I'm tired all the time but have trouble falling asleep at night anyway, and can feel kind of good in response to positive events. So who knows what type of depressive I am. I respond better to tricyclics than other types of ADs, and apparently I respond better to drugs that strongly affect norepinephrine rather than seratonin. I haven't tinkered with my dopamine very much, but I had a temporary positive response to stimulants, which disappeared after a few months. I've responded to ECT more than anything else.
Okay, as to how much ECT costs -- it varies greatly depending on your insurance. If you had no insurance, the Emory hospital would bill you for about $1100 per treatment (not including inpatient hospital stay if you need that). The variation comes when insurance gets involved. My insurance is good - they negotiate the $1100 down and I pay 10% of the negotiated cost. My insurance negotiates it down quite a bit, but I'm not sure exactly how much each treatment costs me. Insurance plans vary greatly, though, so you'd have to check with your insurance company.
About Vagal Nerve Stimulation...About a year ago I almost took part in a study at Emory University. I don't know if the study is still going on, but they told me that every participant would get the implant and medical care for free. Half would have it turned on, half would not (for purposes of study). After the study, everyone would have it turned on. It scared me, though, because the vagus nerve could be damaged during the operation, resulting in permanently hoarse voice, stomach problems, among other things.
Well I can't remember the other questions. I'll post this and go back to check if I missed any.
Posted by Adam on November 28, 2001, at 23:06:49
In reply to Re: Update- My experience with ECT (re:Adam's post, posted by PhoenixGirl on November 23, 2001, at 15:23:55
Hey, PG,
I'm sorry I missed your reply until now...to answer your < 20 questions:
I got bilateral ECT, a total of 8 treatments over about two weeks. I received my treatments around the beginning of 1999, near the end of January, I think. I was out of the hospital by the end of Feb. I did ECT as an inpatient. To make a long story short, I was actively considering doing myself in, and decided it was time to head for the psych ward at Mass. General, which I fortunately did.
Am I depressed? I don't know! I guess it depends on how you define my condition (being someone who was severely depressed in the past). I seem to be doing quite well presently, and I'm not taking any meds or getting any other kind of treatment. It will take a bit to exlain how I have arrived at this point (to answer your final question), so I apologize if I'm being long-winded:
To be honest, I was pretty ignorant about ECT until I got it. Of course, I had no idea that Psychobabble existed at that time! Anyway, I was in such bad shape by the time I was hospitalized I was pretty much in the mood to let them do whatever they wanted, because I was at the end of my rope, and figured I had nothing to lose. When I responded to the treatments, it was the doctors who were following me who steered me towards other drugs. I think, at that time, I actually wasn't aware of maintainance ECT, and no one really discussed it with me. After getting ECT, I relapsed about a month later. I tried a few drugs, either alone or in combination, but they didn't help. Then I got into a transdermal selegiline study, and responded extremely well to that. So I just continued on selegiline, evetually switching to high-dose oral selegiline once the study was over. That continued for a while until I started having some odd and distressing physical symtoms that seem to be connected somehow with the selegiline. I got off the selegiline so I could get some tests, improved almost immediately, and just never went back on it. My mood has remained good despite the change, and that's where I'm at now.
> Hi Adam. Yes sometimes I've felt kind of weird. It is hard to describe, and it's not a bad feeling, just a weird one. I guess maybe it's because I am so not used to feeling alright, it's like a new experience for me. To me, life equaled suffering, so to not suffer anymore....I just don't know what to make of living in wellness. I hope that I can keep getting maintenance ECT, or whatever treatment to sustain this effect, and eventually feeling good will seem natural and feeling bad will be the unusual feeling. Adam, let's play 20 questions! : When did you get ECT, how many did you get, bilateral or unilateral, are you still depressed, why haven't you done maintenance ECT?
>
Posted by ALANW on November 29, 2001, at 18:34:36
In reply to Re: PHOENIXGIRL! » PhoenixGirl, posted by Adam on November 28, 2001, at 23:06:49
> Hey, PG,
>
> I'm sorry I missed your reply until now...to answer your < 20 questions:
>
> I got bilateral ECT, a total of 8 treatments over about two weeks. I received my treatments around the beginning of 1999, near the end of January, I think. I was out of the hospital by the end of Feb. I did ECT as an inpatient. To make a long story short, I was actively considering doing myself in, and decided it was time to head for the psych ward at Mass. General, which I fortunately did.
>
> Am I depressed? I don't know! I guess it depends on how you define my condition (being someone who was severely depressed in the past). I seem to be doing quite well presently, and I'm not taking any meds or getting any other kind of treatment. It will take a bit to exlain how I have arrived at this point (to answer your final question), so I apologize if I'm being long-winded:
>
> To be honest, I was pretty ignorant about ECT until I got it. Of course, I had no idea that Psychobabble existed at that time! Anyway, I was in such bad shape by the time I was hospitalized I was pretty much in the mood to let them do whatever they wanted, because I was at the end of my rope, and figured I had nothing to lose. When I responded to the treatments, it was the doctors who were following me who steered me towards other drugs. I think, at that time, I actually wasn't aware of maintainance ECT, and no one really discussed it with me. After getting ECT, I relapsed about a month later. I tried a few drugs, either alone or in combination, but they didn't help. Then I got into a transdermal selegiline study, and responded extremely well to that. So I just continued on selegiline, evetually switching to high-dose oral selegiline once the study was over. That continued for a while until I started having some odd and distressing physical symtoms that seem to be connected somehow with the selegiline. I got off the selegiline so I could get some tests, improved almost immediately, and just never went back on it. My mood has remained good despite the change, and that's where I'm at now.
>
> > Hi Adam. Yes sometimes I've felt kind of weird. It is hard to describe, and it's not a bad feeling, just a weird one. I guess maybe it's because I am so not used to feeling alright, it's like a new experience for me. To me, life equaled suffering, so to not suffer anymore....I just don't know what to make of living in wellness. I hope that I can keep getting maintenance ECT, or whatever treatment to sustain this effect, and eventually feeling good will seem natural and feeling bad will be the unusual feeling. Adam, let's play 20 questions! : When did you get ECT, how many did you get, bilateral or unilateral, are you still depressed, why haven't you done maintenance ECT?
> >
I HAVE BEEN TRYING TO POST FOR TWO WEEKS ON ECT AND TOPAMAX. DOESN'T SEEM TO BE POSTING FOR SOME REASON. HAS ANYONE HAD ECT AND TAKEN TOPAMAX? ALANW
Posted by SLS on November 29, 2001, at 19:00:52
In reply to Re: R a question for SLS, posted by Anna P. on November 28, 2001, at 14:51:42
Hi again, Anna.
> > Has VNS been approved for depression in Canada by any regulatory agency?> Yes, VNS has been approved as a treatment for depression in Canada.
That's great! The more options available, the better. That's why I'm all in favor of having crappy antidepressants continue to float around. Some people do respond amazingly well to trazodone, moclobemide, and reboxetine.
> That's true, VNS is expensive, but did you know there wil be a study around the spring at MUSC at North Carolina. I spoke with the nurse over there.
Thanks for the heads-up! I would guess that it's one of Dr. George's studies. (MUSC is in South Carolina). He has helped pilot studies of both rTMS and VNS. It would be nice to get his opinion as to which one he thinks is better. Even though I have friends down in Charlston, I doubt it would be feasable for me to live down there. I should start buying lottery tickets.
> I'm in a big dispair. Currently I'm on Reboxetine and Stelazine, but they don't work for my anergy. I have no more medications to try, and those that I tried in the past don't work anymore. I developed a resistence to them.
Which drugs worked? Which ones have definitely helped - even if only partially?
What is your current diagnosis?
Is Stelazine being used as an antidepressant? Some people have become manic while taking it, so I don't doubt that some doctors might choose it for unusual cases.
I guess you've already tried things like Dexedrine, Adderal, Ritalin, and Provigil. What about Mirapex? What about sulpiride or amisulpride? What about Parnate or Nardil. In the past, some doctors have used for their difficult cases combinations of high-dosage Parnate (120+ mg.) with a tricyclic along with either a stimulant or DA agonist. I did. I gleaned one of my better improvements with this combination. Parnate definitely does things at high dosages that it doesn't do at low dosages. MAOIs do more than just block the monoamine oxidase enzyme. I came across one abstract describing a study designed to compare low and high dosages of Parnate so as to investigate why the high-dosage treatment is sometimes found to be effective in TRD. It indicated that 5-HT2 receptor antagonism became evident at the higher dosages that was not apparant at the lower dosages. The study used rodents, but the dosage per body weight ratios were designed to reflect those used in human applications.
> I was in Atlanta to get some TMS, but I had to come back because my meds stopped working and my depression got worse.
Do you live near Atlanta? If not, what kind of arrangements did you use for lodging?
> I had only four sessions, but now I'm very sceptical whethet TMS works at all.
They're starting to play around with much stronger magnetic fluxes.
> How are you doing, Scott?
Right now, I'm not doing too well. But I'm not feeling as horrendous as I was a few weeks ago. I was a few weeks ago. I'm currently taking Lamictal 300mg., Effexor 300mg., and nortriptyline 75mg. My doctor just raised the dosage of nortriptyline after my blood level was shown to be too low. I will stay with this regimen for a minimum of 2 weeks, and probably 4 weeks if my blood levels reach the therapeutic range. I will keep my fingers crossed, but I'm not expecting much. One good thing that has come of this is that I am becoming more patient with drug trials. It is known that neuronal receptors take about 2 weeks to adapt to a change in the brain's environment (receptor-turnover). Therefore, to terminate a trial of a dosage adjustment before 2 weeks (3 is better) might allow one to pass right by their road to success. In my way of thinking, someone who has failed to respond to many drug trials doesn't have the luxury to not fully explore any given treatment. This means time. I seem to have "tickled" the brain a little with all three of the drugs I'm taking, so I am comfortable with the decision to continue with the trial for another month. My doctor wants to add Remeron next. If it doesn't work out, I'll probably head in the direction of using Nardil with Lamictal along with either nortriptyline or imipramine, and possibly add Zyprexa or Geodon.
Sorry if the post was too long.
I hope tomorrow offers you a smile. :-)
- Scott
Posted by Defective on June 23, 2011, at 4:00:22
In reply to Update- My experience with ECT, posted by PhoenixGirl on November 20, 2001, at 16:53:36
Hi, please let me know what your doctor says about maintenance ECT. I've tried every medication imaginable since I was 9 years old and I'm now 29. I'm depressed, but don't have any other co-existing mental health conditions. Are you bipolar or just depressed? Do you struggle with any other forms of mental illness? I'm very desperate and currently considering ECT, so any information you have to share would be very helpful. I can't imagine the cognitive impairment of depression being less damaging than the effects of a life of maintenance treatments on ECT, but I'm sure it's possible. Also, if you have any other questions, please let me know anytime.
Posted by Defective on June 23, 2011, at 4:11:35
In reply to Update- My experience with ECT, posted by PhoenixGirl on November 20, 2001, at 16:53:36
Hi, please let me know what your doctor says about maintenance ECT. I've tried every medication imaginable since I was 9 years old and I'm now 29. I'm depressed, but don't have any other co-existing mental health conditions. Are you bipolar or just depressed? Do you struggle with any other forms of mental illness? I'm very desperate and currently considering ECT, so any information you have to share would be very helpful. I can't imagine the cognitive impairment of depression being less damaging than the effects of a life of maintenance treatments on ECT, but I'm sure it's possible. Also, if you have any other questions, please let me know anytime.
Posted by PhoenixGirl on June 23, 2011, at 16:07:33
In reply to Re: Update- My experience with ECT, posted by Defective on June 23, 2011, at 4:00:22
Hi there. My post actually was from about 10 years ago. I had (and still have) major depression, not bipolar, although my mother is bipolar.
Anyway, I found that ECT helped me temporarily. I had a major mood swing, so my doctor stopped the maintenance ECT. The thing about ECT, and all psychiatric therapies, is that different people can have different experiences with it all. Your mileage may vary.> Hi, please let me know what your doctor says about maintenance ECT. I've tried every medication imaginable since I was 9 years old and I'm now 29. I'm depressed, but don't have any other co-existing mental health conditions. Are you bipolar or just depressed? Do you struggle with any other forms of mental illness? I'm very desperate and currently considering ECT, so any information you have to share would be very helpful. I can't imagine the cognitive impairment of depression being less damaging than the effects of a life of maintenance treatments on ECT, but I'm sure it's possible. Also, if you have any other questions, please let me know anytime.
Posted by Lamdage on June 23, 2011, at 16:41:29
In reply to Re: Update- My experience with ECT, posted by PhoenixGirl on June 23, 2011, at 16:07:33
Moodswing = positive or negative? How you doing now?
You said you took all these meds, but no irreversible maoi. If this still is the case: you sound like a nardil candidate to me!
Posted by Defective on June 23, 2011, at 19:21:32
In reply to Re: Update- My experience with ECT, posted by PhoenixGirl on June 23, 2011, at 16:07:33
Whoops, I thought the date was an "11" not a "1." Thank you so much for responding. Let's hope it doesn't come to ECT before I find a solution.
Posted by PhoenixGirl on June 23, 2011, at 21:17:38
In reply to Re: Update- My experience with ECT, posted by Defective on June 23, 2011, at 19:21:32
It's been 10 years since I got ECT, 20 since the depression started, and I'm still f-ed up. Not as f-ed up as I was, but still. This depression thing is a beast. I'm proud of myself for surviving it and turning out pretty good, lol.
But yes, I have tried Nardil. And the mood swings were negative, I'm afraid. I haven't been suicidal in several years now.
Posted by mogger on June 25, 2011, at 21:55:40
In reply to Re: Update- My experience with ECT, posted by Defective on June 23, 2011, at 4:00:22
That is absolutely fantastic news PhoenixGirl. Definitely go for the maintenance ECT as I knew a woman who did the maintenance ECT and still maintained all the benefits. All the best to you.
Joseph
Posted by Lamdage on June 26, 2011, at 8:00:34
In reply to Re: Update- My experience with ECT, posted by PhoenixGirl on June 23, 2011, at 21:17:38
Its good to hear you improved!
A question: did you get possible underlying physiological causes checked? Hormones, heavy metals, large blood work, candida etc etc?
What kind of therapy did you do?
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