Psycho-Babble Medication Thread 1033566

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Any experiences with Deep Brain Stimulation (DBS)

Posted by Deahoidar on December 22, 2012, at 18:03:04

(I am sorry if this is off-topic. I didn't know which forum to post this in.)

I see more and more about deep brain stimulation (DBS) for treatment-resistant depression. Does anybody have any experience with it?

The study reports talk about "benefits" and "remission" but it would be good to hear from some folks who have first-hand experience.

Is it really a great thing? Can it bring back hope for a life? Or do the costs outweigh the benefits?

 

Re: Any experiences with Deep Brain Stimulation (DBS)

Posted by rjlockhart37 on December 23, 2012, at 19:49:19

In reply to Any experiences with Deep Brain Stimulation (DBS), posted by Deahoidar on December 22, 2012, at 18:03:04

the good thing i've read is if it causes side effects, its reverable...they just have to tune the chip diffrent, or totally remove it if its not doing any good. I don't know exactly how it works, maybe a idea is the electrical activity increase, in certain areas of the brain causing nuerotransmitter release....a mild form of shock therpy, yet MUCH less in the electric currents, and its contant, shock is only a few seconds of surging electrocity, and really in my opinion, people who have to get it done every couple years...there's risk of brain damage. Yea....DBS does look like it offers some mood improvements...but its not a drug, its pace maker in the brain. You have to find a doctor that will consider it and usally you will have to fail drug treatments, i don't know too many doctors that use this on depession without obligation situation.

hope that helps...im not at all educated in this area.

r

 

Re: Any experiences with Deep Brain Stimulation (DBS)

Posted by Deahoidar on December 26, 2012, at 12:50:00

In reply to Re: Any experiences with Deep Brain Stimulation (DBS), posted by rjlockhart37 on December 23, 2012, at 19:49:19

I recognize that DBS is pretty much a treatment of last resort. For people who have not found relief with countless medication trials and other treatments (e.g., counseling, ETC, TMS, etc.)

In my experience with Psycho-Babble, there seem to be quite a few of us. Myself included.

DBS is FDA-approved for Parkinson's disease but not yet for depression. Clinical trials are underway. Some depressed patients have been treated. I was wondering if there are any on this forum. Perhaps not. Yet.

Having been through over a dozen thorough trials of different p-meds, endless psychotherapy and scores of ECT treatments, I'd probably be a good candidate.

Anybody with additional information of the subject of deep brain stimulation is welcome to chime in. Thanks.

 

Re: Any experiences with Deep Brain Stimulation (DBS)

Posted by Meltingpot on December 30, 2012, at 16:01:19

In reply to Re: Any experiences with Deep Brain Stimulation (DBS), posted by Deahoidar on December 26, 2012, at 12:50:00

I know of two people here in the UK who were on a trial of DBS which stimulated both Area 25 and the Nucleous Accumbens (sorry if my spelling is a
bit out). I'm not sure which area they targeted in the first year, I think it may have been Area 25 but neither of them responded in the first year. However, in the second year (when I think the Nucleous Accumbens was simulated, both men responded really well. One man who had been unable to leave the house or work or do anything was suddenly back in the land of the living, reforming his old band, buying a new motorbike and seemed to really be living life again.

I have to say though, that the other man, who I got to know over the phone and who always took time to answer my questions about the treatment and to listen to me, sadly took his life this year so I'm not sure what happened. I know the treatment had been working for him because he told me. I'm not sure how or why he crashed.

If you go to the clinicaltrials.gov site you will find loads of studies with DBS on there.


Denise

Denise

 

Re: Any experiences with Deep Brain Stimulation (DBS)

Posted by TXcyborg on January 5, 2013, at 0:25:54

In reply to Any experiences with Deep Brain Stimulation (DBS), posted by Deahoidar on December 22, 2012, at 18:03:04

> Does anybody have any experience with it?

I've had it.

> Is it really a great thing?

Like most things, that's subjective. And who really knows what the primary factor is when your life actually turns around and gets better, especially when you are getting multiple modes of treatment, like meds, therapy, and DBS. But I know that two years out, I'm a lot better, most progress being made since my device got turned up to the highest setting.(single contact...what most people do because going to more than one contact causes very bizarre side effects, they tell me)

> Can it bring back hope for a life?

Yes.

> Or do the costs outweigh the benefits?

I was at the point I was willing to risk death to get better. I think you have to be firmly at that point to risk brain surgery. And I did have complications - a raging infection that required four nights in the hospital and six weeks of taking one of the strongest oral antibiotics on the market - narrowly avoiding an extended relationship with a PICC, although they only decided to go with oral antibiotics AFTER putting one in - and as you might expect, significant pain. But I was off prescription pain meds and the muscle relaxant within 10 days (earlier, maybe, because I was really allergic to one of them, I discovered). I have a couple great scars mostly covered by hair on my head and a 3"x1" horizontal scar on my chest (right side - you get to pick) that I believe is so gnarly because of the infection. And I get to be patted down every time I fly. Oh, and everything study-related for me (medication, surgery, treatment for infection, etc) was free. Of course, if you'd asked me your last question maybe five days after my surgery, when I was puking my guts out because I was so stopped up from the painkillers that food could no longer go anywhere but up and every heave made me feel like my staples and sutures were going to burst and my head would explode, I might have had a different answer. I recall saying it was the second worst night of my life and I had broken myself. But that's ancient history now.
--

Happy to answer additional questions.

 

Re: Any experiences with Deep Brain Stimulation (DBS) » TXcyborg

Posted by Deahoidar on January 11, 2013, at 21:37:38

In reply to Re: Any experiences with Deep Brain Stimulation (DBS), posted by TXcyborg on January 5, 2013, at 0:25:54

Thanks for your input and relating your experience. You said it -- willing to risk death to get better. I'm there and not for the first time.
I am trying to be optimistic and am moving fwd with participating in the study. I am very sorry to hear of your infection troubles. I imagine that could cause a number of people to drop out of the study.
This is a larger double-blind study with a couple hundred patients. I'm hoping it delivers some benefits and helps advance understanding of this terrible disease.
Thank you for sharing. Hang in there. I sincerely hope the benefits last.

 

Re: Any experiences with Deep Brain Stimulation (DBS) » TXcyborg

Posted by SLS on January 13, 2013, at 6:58:22

In reply to Re: Any experiences with Deep Brain Stimulation (DBS), posted by TXcyborg on January 5, 2013, at 0:25:54

Where in the brain did they place the electrodes?

Thanks.


- Scott

 

Re: Any experiences with Deep Brain Stimulation (DBS)

Posted by TXcyborg on January 14, 2013, at 13:51:49

In reply to Re: Any experiences with Deep Brain Stimulation (DBS) » TXcyborg, posted by SLS on January 13, 2013, at 6:58:22

The electrodes are in Brodmann Area 25.

 

Re: Any experiences with Deep Brain Stimulation (DBS) » TXcyborg

Posted by SLS on January 14, 2013, at 16:06:10

In reply to Re: Any experiences with Deep Brain Stimulation (DBS), posted by TXcyborg on January 14, 2013, at 13:51:49

> The electrodes are in Brodmann Area 25.

Okay. Thanks.


- Scott

 

Re: Any experiences with Deep Brain Stimulation (DBS) » Deahoidar

Posted by TXcyborg on January 14, 2013, at 17:39:57

In reply to Re: Any experiences with Deep Brain Stimulation (DBS) » TXcyborg, posted by Deahoidar on January 11, 2013, at 21:37:38

Thanks for the well-wishes! Like I said before, I just can't say that I *know* what has made the difference for me, but having taken almost every antidepressant and off-label medication out there and having received good therapy before the DBS, my current good state almost has to be significantly helped by the stimulation (I think the only thing I hadn't tried was ECT). Unfortunately, not everyone has the same results (that was me trying to ensure I'm not making DBS seem like a magic cure-all for everyone).

Good luck with your study participation. I got into this by trying to get in a different study, failing to meet the criteria, and being presented with the DBS alternative. And I'm really glad it turned out the way it did. Even if it hadn't worked out well for me, I was glad to be helping to be a small part of advancing the science in the mental health field.

I think that most people try to stick it out in the study as long as possible, even in the face of infection - I mean, once you have had the dang things implanted in your head and chest, why not give it the best shot to work? The worst for me is the double-blind nature of the trial; you (and the doctors) just don't know if you're receiving stimulation in the first phase.

Like I said before, I'm happy to answer further questions, and I wish you all the best. If I have any updates, I'll try to remember to post them here.


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