Mike,
Would it be possible for you to document the steps you take for the tDSC. Frankly, I find the whole 'at home' procedure pretty intimidating. Ballerina has written some great posts but for me personally, it might be easier to follow you every step of the way.
I had talked to the docs at Beth Israeal a few yrs back but did not pursue the study. I am wondering if at this point the study would be better or going your DIY route.

Thanks
Liz

Thanks!
 

Hi ballerina,
Thanks for the response. I had no idea TMS carries the risk of seizure. That is not something I need to add to my list of diagnoses. Yes, you are right, I would hate to shell out a bunch of money just to be a guinea pig (not that I haven't done it before, but I would like to avoid it again).
Thanks for all your help!

Dear Mike,

I think it is great you are trying TDCS. Best of luck to you.

Joydee :)

The original Beth Israel study is closed although the lead researcher Dr. Helena Knotkova told me she was considering another exploring the effects of longer treatments.

The problem with studies is that you are bound by their protocols which may or may not work. If the particular protocol does not work the treatment may be abandoned prematurely when another protocol might yield better results.

I can understand the intimidation factor. I was nervous prior to my first treatment at Beth Israel but was immediately struck with the simplicity of the process. It is very similar to a TENS unit.

Don't let intimidation keep you from trying it.

The device is currently used by physical therapists to deliver medication to the tissues of muscles rather than to the surface of the skin. It can be purchased without a prescription. Check various websites for the cheapest price. The Iomed Phoresor, which is the device previously used by Beth Israel is no longer manufactured. The company was bought out by EMPI, and the last I checked the replacement was rather pricy.

I am so hoping that you your treatment is successful!!!!

Mike,

Since you are interested in restoring lost executive functioning might I suggest that after the first round of treatments you reverse the electrodes, that way getting both sides of the brain.

Although tDCS seems to be more effective with upper limb pain the positive effects on executive function seems to be independent of limb pain.

I hope and pray you get the relief you so deserve!!!!!!!!!!!!!!

Mike,

We're in California, not far from USC, and we had her ECT done in the state. She definitely suffers from depression associated with her pain, but she was also treated once for depression before she developed the horrendous pain. I don't think the prior treatment was an issue; she clearly was distressed and suicidal, and had failed quite a number of antidepressents (which were taken for pain more so than depression). The supervising ECT psychiatrist was very good to work with, and recognized he had essentially two choices: treat a live person or learn about a corpse later (sorry to be so blunt). Our insurance covered it without hesitation (I'm at a private health science university with a PPO).

She has had more than a half-dozen "rounds" of treatments, but some were just 3-4 treatments before she stopped them, whereas others were 8-9 treatments followed by 4-5 maintenance treatments with increasing intervals. It kind'a depended on what we talked her into. I think she would have fared better had she continued with regular maintenance, but she always insisted on no more...until 3-4 months later she'd be in such bad shape she was ready to give it a try once again, which meant starting over.

My wife had both unilateral and bilateral ECT. The initial treatment started with bilateral, I believe because she was so suicidal they wanted a faster response. Later, they were giving her unilateral...and then we began asking for bilateral to get a stronger response more rapidly, which I believe we saw.

The memory issues were there, more so for the first few rounds (she seemed to tolerate memory stuff better with later rounds), but they always resolved just fine, far as I'm concerned. My wife insists she has memory issues, and she certainly does have "gaps" within the last 5 years since falling into her chronic pain crisis. However, her current working memory and memory prior to the last 5 years seems fine. I often remind her she's got a number of potential memory-challenging factors, so it's hard to pinpoint the worst culprit; these include 1) chronic pain; 2) long-term benzodiazepine use; 3) ECT; and 4) boatloads upon boatloads of ketamine. All of these are associated with memory problems. She functions just fine today (with regard to memory, that is, and not much else), so the ECT has caused no physical harm (emotional harm is another issue...more in a moment). Frankly, I wish she would magically forget EVERYTHING from the last 5+ years. I found a couple of case reports where a chronic pain patient became amnesic and--bingo--the pain disappeared. I know you're well aware of how ECT is thought to work, but for the sake of others, I'll say that memory effects could be involved with the efficacy for pain (in addition to changes in blood flow and neurotransmitter production and distribution; collectively these can disrupt the established pain pathways while reorganizing the brain). I felt her most noticeable improvement came after 4-6 treatments when I would begin to see some memory issues. The more memory issues, it seemed, the better the pain reduction.

Having mentioned ketamine, let me add this. After the initial few rounds, I talked them into using ketamine for anesthesia, hoping it would facilitate efficacy, but it was a bit hard on my wife to wake up confused and feeling weirded out for a portion of the day. She was already extremely stressed by the procedure. At one point we stopped the ketamine and went back to other options (I forget which), and I'm not convinced the ketamine (usually 100 mg) made things any better.

Finally, there were several things that provoked her animosity toward ECT; these included: 1) the personal debasement she felt, in part from her perception others thought she was crazy (not true); 2) the loss of control she felt, especially when the mask (anesthesia) was placed over her face, which brought on memories of a terrible teenage event; 3) the i.v. needle pricks, of which she has had hundreds, making her veins difficult to work with, so we sometimes had a PICC line placed to reduce this (I got real good at changing them myself); and 4) fear that family and friends would learn of the treatments. At this point, she becomes hysterical if I even mention ECT. These are all unfortunate, because the treatment was decidedly more patient-friendly than a number of other procedures she underwent.

I'd better add one more thing. I think she's alive today only because ECT kept her going, and I think it's a good way to set back the sensitization, buying us time to explore other options.

Sorry to write so much. I can only hope that someone reading this (and not just Mike) might be helped in some way.

Ballerina...what do you mean by reversing the electrodes? Reversing with respect to hemisphere (anodal stimulation of both motor cortices), or changing to cathodal stimulation (the black lead over the motor cortex and red lead on the forehead)?

My recollection is that anodal stimulation decreases pain, whereas cathodal stimulation increases it, at least over the motor cortex. I'm also recalling that temple-to-temple stimulation can help executive function; I believe the instruction manual for the Fisher-Wallace stimulator illustrates this electrode position.

My wife had a LOT of TMS treatments, and I read up on everything in advance and spoke at length with pracitioners and a manufacturer rep. The risk of seizure is really quite small, at least for the primary targeted region for depressoin (left dorsalateral prefontal cortex).

I haven't followed the technology since late 2009, but they were developing a unit for deeper penetration, and the risk of seizure was much greater--which was hampering development. But...maybe the units are now available.

Again, I think the evidence for pain efficacy is stronger for tDCS than rTMS, and at a minute fraction of the cost.

Dear Bill -

Thank you for taking the time to write your most recent and considerably detailed post.

I have never had depression on the scale your wife has experienced. The closest I can come was my beloved and wonderful aunt by marriage, a classic late-Sixties earth-mother, who developed postpartum depression following the birth of her second child - frankly discussed her suicidal ideation with her husband - and was in extensive psychotherapy for a couple of years before rebounding to the point that she wanted another child. Tragically, the baby died in an accident a few weeks after her birth, one for which my aunt believed herself responsible, and unable to live with the contradictions, died a few days later. (Then too, there was my little sister's fiancé . . . ) So I appreciate the potential lethality of severe depression all too well. This has to have been an enormous burden on you, day-by-day over all the years.

I can address a few of the other points you make:
To be candid, it sounds as though your wife has experienced other (“comorbid”) psychiatric issues along with the depression, for which I assume she has received psychotherapy (your reference to a traumatic event in adolescence) and medical treatments as well: hopefully something beyond benzodiazepines, to which most people develop a tolerance over time.

Then too, i.v.’s pose a special problem for people with RSD/CRPS. In 2004, I was being worked up in Philadelphia for a ketamine coma treatment in Germany that never happened, due to my preexisting glaucoma and the role that ketamine plays in elevating intraocular pressures. (Years later I learned the a mannitol drip would have resolved this issue completely: I have no way of knowing if that information was known to the German physicians in the study at the time, but I understood that a Dx of glaucoma was a per se exclusion criteria of their study.) In any event, before anyone had brought my glaucoma to the attention of the physicians in Germany, the protocol first required that I have and fail a 5-day continuous lidocaine infusion. Dr. Schwartzman correctly predicted that it would have no effect on me, but we had to put on the dog and pony show. Except that the nurses were unable to insert the 20 gauge 3-lead lines into any of my veins. Dr. Schwartzman saw this and matter-of-factly noted that my vasoconstriction was so advanced, a “central line” would have to be (surgically) inserted into my chest. Trust me, PICC lines – which were just then becoming widely available - are a vast improvement.

Today, before I have any procedure done that requires the infusion of a significant amount of a liquid, e.g., a dye of some sort, in too short period of time to allow for the use of a 22 gauge i.v., I first schedule a visit to the hospital’s PICC clinic and return when I’m done to have it removed. As of a few years ago, of over 4,000 patients who had participated in a coronary CT angiogram study at Cedars-Sinai Medical Center in Los Angeles, I was the only one who couldn’t tolerate a 20 gauge i.v. The lines went into me with enough effort, but as soon as I raised my arms behind me (the preferred position for the scanner) two separate i.v.’s - one in either arm for the sake of redundancy - immediately kinked in 90 degree angles. The joys of RSD/CRPS . . .

Finally, your wife’s fear of the stigma of ECT among her family and friends reflects on a remarkable lack of sophistication in Southern California, specifically when it comes to the treatment of psychiatric conditions, and more broadly – beyond the Westside of LA, West Hollywood, etc. – there is a tremendous ethos of conformity, notwithstanding whatever “laid-back” view the rest of the world may have of us. I feel for both of you. Thank you for being so forthright in your reply. This is clearly not easy stuff.

I can only hope the tDCS becomes an easier sell.

Mike