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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by honeybee on May 31, 2006, at 18:39:45
So, it's come to this.
My depression is quite awful and, though I haven't really run the gamut of medicines (effexor for five pretty good years followed by several bad tries to go back on; cymbalta which was ok; sam-e, which I'm on only barely, which I can't say that I like so much; lexapro for a mere week that made me more depressed), I'm rather terrified to go back on them because of concerns that I have (rational or not) about my liver, about my heart, about the long-term effects on my brain.
But my pdoc and I are at a crossroads. Though I'm fairly functional (my pdoc has told me that, though I cry upwards of 6 times a day, can barely think, and have suicidal thoughts from time to time (don't worry, I have discussed this with people who care; we have a plan/contract!), etc., I don't have major depression), I feel like I need to get out of this depression--and fast.
Since I live in New York and since some people have had such positive responses to it (though I respect and have seen the negative ones), I'm considering participating in the TMS study at Columbia. Six weeks (three with TMS; three additional if you didn't receive if during the sham period) commitment, plus follow-up therapy with an antidepressant.
Now, I'm considering doing this, but something's stopping me. (My brother, a therapist says, why not wait until it's approved by the FDA?) (My husband says, what is the benefit of this, directed at *your brain* as opposed to a pill.) (My mother: maybe your brother is right.) Perhaps it's the voices of the people who care about me who don't want me to do it because they don't seem to know much about the treatment and want the experts to help me. My psychiatrist has, thus far, only recommended that I get in touch with the people at the study site and discuss it with them.
My gut tells me to go for it. I've done a semi-experimental surgery before (I got a pleat in my esophogus: no more GERD! Thanks Dr. Starpoli!), so I'm not scared that this is in it's embryonic stage so much as I am that this is my brain and I just don't know whether or not it's going to help. The initial results, that 50 percent of the patients improved (this from the company that makes the machines) make me skeptical (as does the Mind Centre website). At the same time, I'm so hopeful that this might be a localized treatment for depression that might work for me. So tired of the effects of the ADs on my body...
Anyone have any thoughts? Pros? Cons?
Thanks to everyone...
hb
Posted by cecilia on June 1, 2006, at 5:38:01
In reply to TMS dilemma, posted by honeybee on May 31, 2006, at 18:39:45
I had it done at the Mindcare Centre and it didn't help me. But I'm extremely treatment resistant. It apparently does help many people. The one thing to consider, if you're going to have it done in a study, is that most people need to have the treatments repeated, even if they work the effects wear off. So you need to consider whether you can afford to go for repeat treatments to the Mindcare Centre, or to one of the doctors in the U.S. who have figured out a way to give it privately even though it's not yet FDA approved. If you can afford that, I'd say go for it. At least you'll know from the study whether it works for you. Incidentally, the idea of a "sham" treatment in a study is a sham. If you find it as painful as I did, you'll know you're not getting the "sham"!!!!! But again, everyone is different, some people say it doesn't hurt at all. Cecilia
Posted by honeybee on June 1, 2006, at 9:49:04
In reply to Re: TMS dilemma, posted by cecilia on June 1, 2006, at 5:38:01
Hi, Cecilia,
From what I understand, they offer "compassionate TMS" as part of the protocol so that, if people respond to it and nothing else, they will be allowed to get treatment even after the study is done.
How long/what were your treatments? So, you noticed no change at all?
Thanks for responding.
HB
Posted by MidnightBlue on June 1, 2006, at 15:54:10
In reply to TMS dilemma, posted by honeybee on May 31, 2006, at 18:39:45
I tried to get into the study here in my city. I figured out there was basically a 25% chance the study would work. Half get the real deal and half don't, half are helped, half aren't. The pdoc that was leading the study thought I was very rational about the whole thing and a "good" candidate.
I found the whole process very helpful even though I didn't qualify for the study. He took a very thorough history and even suggested a med to try I had never been on. An MAOI. I didn't make the study because I flunked the EKG--I had early ventricular heart beats.
MidnightBlue
Posted by cecilia on June 2, 2006, at 21:13:57
In reply to Re: TMS dilemma » honeybee, posted by MidnightBlue on June 1, 2006, at 15:54:10
I had 20 treatments-2 a day for 2 weeks (except weekends) at the Mindcare Centre. It was expensive- U.S. $200 per treatment, so $4000 plus hotel costs. (in 2004). No benefit. I tried to get in the experimental trial in my city and was refused because there wasn't any time in the last 5 years I hadn't been depressed. (Actually I can't think of any time in the last 40 years I haven't been depressed.) It was definitely depressing to be too depressed for a depression trial..... Cecilia
Posted by honeybee on June 6, 2006, at 8:30:08
In reply to Re: TMS dilemma, posted by cecilia on June 2, 2006, at 21:13:57
Cecilia,
I'm so sorry to hear that! The hope, of course, is that this treatment will get approved within the next year, and that we'll all be able to get it, with health insurance.
I hear you on the discouragement, though. I was treated successfully for a while with Effexor, but for the last year it's just been straight relentless depression. Even happy moments are elusive, which is odd. I mean, I can identify, "less depressed" moments vs. "more depressed" moments, but it's a bummer not to be honestly able to say, "I had a good time this weekend, etc."
hb
Posted by honeybee on June 6, 2006, at 18:04:49
In reply to Re: TMS dilemma, posted by honeybee on June 6, 2006, at 8:30:08
Today, I met with the folks at Columbia. It was a several hour meeting that included a fairly thorough interview, a short test, and a partial physical examination. I would have had my blood drawn and an EKG to get things rolling, but it appears that my right bicep has a bite/rash that looks deceptively lyme-ish. So things have stalled a bit. Alas.
Oh, but I did make the cut. If I get the Lyme situation resolved, then I should be ready to be included in the study.
hb
Posted by honeybee on June 7, 2006, at 17:31:39
In reply to UPDATE, posted by honeybee on June 6, 2006, at 18:04:49
Looks like not!
My bite's probably not lyme (in fact, the PA's guess is that it's a spider bite), but I'll have to get the ELISA in four weeks.
DQ'd!
Oh, well, looks like it's off to the med-go-round...
This is the end of the thread.
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