Thanks Ballerina for the link!
Btw I contacted one of the Doctors **

And wanted to share his response:

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Dear Steve,

60-70% of patients respond to tDCS. This has been my experience which is similiar to to that of the published studies. The problem with quoting this statistic is that studies utilizing tDCS for CRPS have small patient populations. In addition, studies using tDCS for chronic pain include patients with CRPS, but you really can't extrapolate the results for CRPS, because results may be skewed by the different conditions treated. The duration of relief provided by 5-10 treatments is about 3 months, when tDCS needs to be repeated.

Finally, non-responders to the protocol used for treatment may respond to a different protocol or to a longer period of treatment. Currently, there are 3 locations which can be stimulated to provide pain relief. These can inhibit pain, reduce sensitivity to pain and decrease the emotional component to pain.

I have used tDCS for patients having spinal cord stimulators. There is additional pain relief when tDCS is added.

Individual case reports of patients with severe pain treated with tDCS for longer periods document greater pain relief -up to 60% reduction. Most tDCS protocols still use 5-10 treatments.

I hope this information is helpful.
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[

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Iguanabill :

thanks for your posts. Pretty darn informative and educational.
I'd love to see you, ballerina & whoever else feels confident enough, discuss your best guesses as to what's going on in tDCS…

I'm actually reasonably well-educated on the theories of electromagnetic wave propagation, etc. but what's going on with the brain and tDCS still baffles me. I'm a practical person – so I don't need to know what's going on -- but I'm a curious person, so I'd like to hear some ideas from people who don't have to consider all the ins and outs of a research publication to express their ideas.

On another note -- I'm curious if anybody has any simple and inexpensive techniques for vagal nerve stimulation? One of my other symptoms is that my autonomic system is messed up – ramped towards the sympathetic side…

Thanks!

This quote sounds like Jim Fugedy. Am I right?

As regards the length of time pain relief is provided I offer my experiences. When I first had tDCS at Beth Israel one year ago my relief began to slowly wear off and was gone by about three months. When I began in November the positive effects came to an abrupt halt when I got a minor infection. I am currently treating twice a day for twenty minutes and will do so for at least another week. Since I don't want the slow wear off thing or the abrupt halt I will be treating once a day every three days for a week and then once a day every five days to see how far that takes me.

I will share how well this works for me.

In a nutshell, tDCS modulates spontaneous neuron activity by increasing or decreasing the thresholds that determine whether the neurons send a signal. The relatively local effects of tDCS can spread throughout the brain by networks of interconnecting neuron circuits.

There are some forms of vagal stimulation you could try: gagging, holding your breath while bearing down (Valsalva maneuver), immersing your face in ice-cold water (stimulating the diving reflex), and coughing. I'm not sure whether these would have a lasting effect. Sympathetic blocks (injecting lidocaine or bupivicaine) can help reduce sympathetic activity; though they are most effective regionally (placed near the sympathetic ganglion chain), some patients respond to i.v. (total body) infusions. My wife's sympathetic issues always improved with ECT. There are also more permanent but invasive approaches (implanting a stimulator).

Please see below for an overview of neuromodulation procedures.
http://www.ncbi.nlm.nih.gov/pmc/arti...3/?tool=pubmed

In the long term picture, tDCS is really in its infancy. Having posed this question to the top three tDCS folks in the country the bottom line is no one really understands exactly how and why tDCS or why it works for some and not for others.

Steve, I'd be curious to learn the 3 locations the physician was referring to. I'm assuming they are the motor cortex used in most studies to date, the motor cortex/secondary somatosensory cortex that ballerina benefits more from, and the prefontal cortex for the emotional components to pain (which does not appear to be as efficacious as motor cortex). But...maybe he knows of something else. Would love it if you could get this information to us.

As many of you probably recognize, the brain changes dramatically with chronic pain, and brain stimulation ultimately works because it helps to restore normal brain function.

There are some authorities who argue that one can improve their pain condition behaviorally by focusing effort on using the parts of their brain that have become compromised and avoiding the parts used to excess. Memory and executive decision-making, for example, suffer dramatically from chronic pain, whereas fear, anxiety, and catastrophizing become excessive. Brain imaging studies reveal the parts of the brain in chronic pain that are hyperactive and hypoactive. With many or most chronic pain conditions, and certainly all CRPS, the perception of pain ridiculously exceeds the pain signal generated at the painful area. In essence, the pain is mostly if not entirely manufactured by the brain (this is not to say it is made up; it's very real). Extinguishing the pain becomes virtually impossible, and medications and conventional treatments will fail most patients.

I'm personally acquainted with the guy who runs the new pain program at the Betty Ford Clinic in Palm Springs, CA, and he claims that with intensive therapy all of his pain patients can gain pain reductions of 90% or so during the 6-week program. It's very expensive (roughly $1,000/day, which insurance may not cover), focused heavily on addiction recovery (they will take you off all opioids and benzos and engage you with the 12-step recovery program), and takes advantage of group therapy, which he insists is very helpful. I've been trying to convince my wife to give this a try, but she is not ready for it yet. I personally am convinced that many pain patients will benefit from a program like this and regain their normal lives.

Did you happen to ask him what experience he has with treating CRPS patients who have failed spinal cord stimulators?

How do I say this gently? We used the ice water injection into the ear to test for brain activity ' as in brain death, about 30 years ago in ER, checking the pupils reactions, before we stopped CPR, we stopped if there was no reaction. I am not sure how this would relate to pain suppression...

Here is a smattering of publications (there are others) that answer your questions:

Miller SM, Ngo TT. 2007. Studies of caloric vestibular stimulation: implications for the cognitive neurosciences, the clinical neurosciences and neurophilosophy. Acta Neuropsychiatrica 2007: 19: 183–203

full review article available here: http://www.pcng.org.au/IMG/pdf/CVSreview2007.pdf

McGeoch PD, Williams LE, Lee RR, Ramachandran VS. 2007. Behavioural evidence for vestibular stimulation as a treatment for central post-stroke pain. J Neurol Neurosurg Psychiatry 2008;79:1298–1301.

abstract here: http://jnnp.bmj.com/content/79/11/1298.abstract

Williams LE, Ramachandran VS. 2006. Novel experimental approaches to reflex sympathetic dystrophy/complex regional pain syndrome type 1 (RSD/CRPS -1) and obsessive-compulsive disorder (OCD). ABSTRACT. Neuroscience Meeting Planner. Atlanta, GA: Society for Neuroscience, 2006.

excerpt from the abstract (only the abstract was published): "...we irrigated the ear of a patient with RSD with cold water to produce vestibular caloric stimulation accompanied by nystagmus. The procedure produced a striking reduction of pain from a 7 to 4 on a visual analog scale. No such reduction occurred in two placebo controls, lukewarm water in the ear or ice cube placed on the forehead. This patient reported no reduction in pain from previous treatments with a spinal cord stimulator, a pain pump, ganglion blocks, or a transcutaneous electrical nerve stimulation (TENS) unit. We postulate the caloric stimulation activates the vestibular cortex and other areas which then “mask” the sympathetic pain in the adjacent insular cortex."

Ramachandran VS, McGeoch PD, Williams L, Arcilla G. 2007. Rapid Relief of Thalamic Pain Syndrome Induced by Vestibular Caloric Stimulation. Neurocase (2007) 13, 185–188.

full article available here: http://cbc.ucsd.edu/pdf/rapid%20relief%20caloric.pdf

Yesterday evening I dug up some research on this form of brain stimulation and decided to try it since it is very low risk. (vertigo, nausea and headache-no big deal)

Unfortunately this did not work for me. It ignited a nasty pain flare in my jaw, an area of neuropathic pain that had been down to a dull roar. My balance worsened, as I suspected it might, to the point that I could not even sit up for dinner. Although I did not have nausea I developed a searing headache which I still have this morning. I am planting myself in a chair this morning because my balance is so impaired that I fear falling.

This was certainly worth a shot for me to try based on a quick lit review, and I hope it works for others. I would exercise caution, however, if you have balance issues or are prone to headaches.

Bummer! My wife tolerates it okay, but it hasn't helped her. I tolerate it okay myself (yes, I've given it to myself, though I have no pain issue). No one treatment is good for everyone, that's for sure.

We tried the motor cortex/secondary somatosensory cortext tDCS stimulation the night before last, and my wife had a bad headache (something she virtually never suffers) and severe pain yesterday. While there's no doubt what got your headache going, we're just not sure what provoked my wife's headache. We're doing each other a lot of good! (lol)

My wife is now at 20 treatments over 11 days, and hasn't seemed to get anywhere, but we only targeted the secondary somatosensory cortex the one time. We took a holiday from tDCS yesterday. I think we'll try it again tonight or in another few days.

Have a blessed weekend, ballerina. You deserve it.

I got headaches the first time I tried tDCS at Beth Israel but they vanished by the third day of treatment. The resident giving the treatment suggested that I take an extra strength excederine prior to my treatment for day 3 which I did. I had no more headaches after that.

Headache is reported in the literature as a side effect that subsides, but many studies also report headache for the placebo group-wierd huh?

I am praying for your wife to get relief from the next round of treatments. If the next round does not work there are more portocols to try. As soon as I am finished my current round of treatment I will decide on what to try when the treatment wears off, which I hope will be a good while with booster treatments. I am getting very greedy-I want remission and I think over time it is a real possibility!

Have a great weekend!

Ballerina, You are correct it was him

I'm in!
 

Ballerina -

I will not make elaborate excuses for being away so long, I was most if the way through a lengthy missive to you last week when my browser had the good sense to crash under the weight of over a hundred open tabs.

Long story short, I finally have the support of a doctor who will work with me doing tDCS. After my pain doc passed last week because he prefers to work with FDA approved therapies. (When I asked him who in industry could come up with the matching funds that appear to be necessary for an NIH grant in support of the requisite multi-center double-blind study, he suggested "EverReady?")

But today I had a long appointment with my psychiatrist, during which I not only brought up tDCS for what must have been about the fourth time and cataloged the declines in my organizational abilities, short-to-medium-term memory and word recall issues, but focused on something I had come across the night before. A line from a report that was done by a neuro-psychologist who tested me late year:

His performance on verbal fluency, a measure that also assesses left prefrontal function, was in the average range (58th percentile).

That got my attention because in high school, I was winning extemporaneous speech competitions all over the place. So it occurred to me that if I was at the 58th percentile, I had probably burned through a lot of "cognitive reserve" along the way.

At which point he pulled up my 2007 brain MRI study and saw that the neuro-radiologist had noted 1 - 2 cm of "probably non-consequential scarring" on my left parietal lobe - he couldn't access a 2010 study off-hand - but that was enough to convince him that something organic was almost certainly going on (see, Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J et al, J Int Neuropsychol Soc. 2010 May;16(3):566-73 http://www.rsds.org/pdfsall/Libon_Neuropsychol_2010.pdf) yet all of my other treatments were essentially palliative.

And despite the fact that his instinct is that tDCS doesn't covey a sufficiently power to alter "thalamic bursting" (see, Abnormal thalamocortical activity in patients with Complex Regional Pain Syndrome (CRPS) type I, Walton KD, Dubois M, Llinás RR, Pain 2010 Jul;150(1):41-51 http://www.rsds.org/pdfsall/Walton_Pain_2010.pdf) he acknowledges (1) the studies that have shown significant if transient improvement from a limited series of tDCS and (2) that not many SCS vendors would argue that treatment with their units must be done on anything less than a continuous, let alone, daily maintenance basis.

So on that basis he'll do it and write my prescriptions for all the stuff so it comes out as a non-reimbursed medical expense. That, and the man used to serve as an editor of J. ECT, so he's comfortable with electrode placement, etc.

Hey, I may be late to the party but I'm also the most recent arrival! (Ever see the 1973 film of Eugene Ionesco's Rhinoceros, starring Zero Mostel and Gene Wilder? On point and incredibly funny.)

Mike

Welcome to the party! I am thrilled beyond words! I know only too well the frustration of trying to bring doctors around. I am not surprised that your pain doc is not on the same page as you. Regarding his fear that tDCS is not FDA approved I am curious to know if you doc implants SCS in patients with CRPS since FDA approval was based on conditions like FBS, not CRPS. Boston Scientific management admitted to me that PM docs use SCS for CRPS "off label." tDCS as an off label use for FDA approved iontphoresis is no different, (except of course that it has virtually no side effects and can't put a pm doc's kids through harvard)

Regarding you shrinks comparison of tDCS to SCS he may be comparing apples and oranges. The stimulation in SCS only masks the pain. tDCS targets the root cause of CRPS, cortical reorganization.

I have a suggestion. To prevent yourself from paying for your shrink's training with your time and co-pays please consider giving Jim Fugedy a call (Transcranial Brain Stimulation Clinic Atlanta, Ga.) to see if you can arrange for a video consultation between the three of you. It could save you both time and frustration through experimentation and trial and error. Jim Fugedy has a particular interest in tDCS and attentional deficits.

Additionally, if I may tread for a moment where I have not been invited, a thorough review of all meds, perhaps with a good internist, may be in order to see which meds, if any may be contributing to some of your executive function issues in addition to your neuropathic pain. Sometimes PM docs and shrinks, for a variety of reasons, don't regularly perform this kind of evaluation.

Sending you hugs my friend!!!!!!!!!!

Please keep everyone posted!!!!!

I am doing the happy dance for you!!!!!!!

Hi. Thanks for the support! In the interest of time, I've responded to some of your specific comments in blue.

Mike

Two quick follow up points.

A couple of people have asked my why I'm waiting for a prescription before ordering the equipment. The answer is that it's no different that getting a wheelchair, anyone get buy one, but if you itemize your deductions (and they aren't annihilated by the Alternative Minimum Tax) you can probably claim an exemption for an reimbursement medical expense. (And in my case, it means waiting a whole week.)

And as far as Neuropsychological deficits associated with Complex Regional Pain Syndrome, Libon DJ, Schwartzman RJ, Eppig J et al, J Int Neuropsychol Soc. 2010 May;16(3):566-73 http://www.rsds.org/pdfsall/Libon_Neuropsychol_2010.pdf is concerned, the takeaway point from that article is that 2/3's of the people with RSD/CRPS will have something ranging between loss of executive function and "global cognitive impairment," e.g., "dysexecutive syndrome" and some memory impairment, INDEPENDENT OF MEDICATIONS.

So if the right electrical stimulation to the brain - be it tDCS, MCS or RUL ECT - can actually STOP the "abnormal thalamocortical activity" of RSD/CRPS AND ITS ASSOCIATED ILLS, then why not?

Mike

Mike,

Go for it!

You once wrote the very nice article on ECT. I read it with interest among a group of other papers when we made the decision a few years ago (2008, actually) to try it. Frankly, it's the only thing that kept my wife going the past 3+ years. It never kept her pain down indefinitely, but it reduced her sensitization from an 8/9 down to around a 5 for much of the day, and she coped much better. She hated it and fought it, but we went back to it time and time again (more than 6 rounds). Still might have to return to it.

Did you or anyone you know try it? If so, what was the experience like in terms of success?

Hang in there...

Bill -

I can't thank you enough. It's wonderful to hear that it made such a difference.

Your wife is - to my knowledge - only the third person who undertook ECT - in part at least - as a result of that article. And it sounds like she had the best outcome of the three. In another case that was well-documented on NT at the time, the person had some initial relief but freaked after the 3rd or 4th round a friend pointed out that she was demonstrating some gaps in her memory, even though her doctor had advised her in advance that this was to be expected, and they they would resolve within six weeks after completing treatment. As they apparently did, but she was done with it the moment she became aware of the issue, and never made it as far as the 5th round.

Sadly, the remaining situation I was aware of concerned a young woman whose father had contacted me through the RSDSA after reading my article. RUL ECT was not even available in her area, so she went through a full round of 12 sessions of the old-school Bi-Lateral ECT (BL) where electrodes are placed on both temples, including that of the dominant hemisphere: if you're right-handed the left-hemisphere is dominant and vice versa. (So RUL or "Right Unilateral" would be more properly referred to as "Non-Dominant Unilateral.") In any event, she emerged apparently no worse for wear, but without any improvement in her pain. :(

And as set forth in my piece, when I added up all of the case reports and small studies, going back to 1957, it looked like roughly 70% of the participants had some improvement - as did your wife - while the remaining 30% had none. And while no one seems to have a clue has to who is predisposed to have a successful result with ECT, it's interesting when Ballerina notes that tDCS presents with the same 70:30 odds.

Now, a question for you, but first the set up: After I finished the article, my pain doc at USC recruited a psychiatrist who did their ECT work, and he was hot to trot on running it for pain, even going so far - if my wife's self-insured employer would pay for it - of using ketamine as the general anesthetic, even though that would mean I would have to do it on an in-patient basis, where not only was it hypothesized that the ketamine anesthesia would have a synergistic effect with the ECT, but a study cited in the article had shown that when ketamine was used as the anesthesia, there was absolutely no loss of short-term memory following "anesthesia clearance," which took roughly 72 hours. Unfortunately, as this moved up the chain of command at USC, all concern learned that in the aftermath of the 1975 release of One Flew Over the Cuckoo's Nest, Californians did what they do best, they passed an over-broad initiative the next year banning ECT in all forms (RUL had yet to appear on the scene) except in the case of certain specified psychiatric condition, including severe depression, and then only after three psychiatrists independently signed off as to the lack of an alternative, except for bona fide research work done under the supervision of a hospital's Institutional Review Board (IRB). And with that, my chance of having it done disappeared, where, even if my wife's employer approved it, my doctor told my that without funding for a proper study, it wasn't worth a year of his life to go through everything that would be required in order to obtain IRB approval from USC, for something which at best could result in a one-off case note. The publication of which would make it no more likely - as a practical matter - for another CRPS patient to be approved for ECT treatment.

So my question is, did your wife have her ECT done out-of-state or was she "lucky enough" to have presented with depression secondary to her CRPS on account of which the work could be done?

Then too, you say she hated it. I'm curious as to what made the procedure so miserable and whether she had BL or RUL?

That said, your feedback has already been appreciated more than you could know. Thanks again.

Mike

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

Iguanabill,

I have just begun a protocol of reversing hemispheres.

For clarity for all here are details.

I began with anodal stimulation of the motor cortex and secondary somatosensory cortices (M1 and S2, the red over the auditory canal left side of head.) The cathode (black) is placed on the forehead above the right eye.

I just began the new protocol of reversing hemispheres. (Anode above the right ear and cathode above the left eye.)

I did this for two reasons. My CRPS journey began in my left limb and over a very short period of time began in my right arm, while at the same time vanishing from my left limb. I have retained a small area of sensitivity on my left shoulder which is only about the size of a nickel and occasionally a bit larger than a quarter. Given the fact that the entire brain is effected by CRPS, regardless of the side of the body effected by pain in addition to the concern that the small area of sensitivity could broaden its grip I am hoping this protocol will yield additional improvements for my and could prevent an encore appearance of CRPS in the left limb.

When I first received tDCS at Beth Israel it was suggested that I could return for additional treatments, which would include maintaining the same electrode placement but switching the electrodes. I have not tried that particular protocol.

I too recall that temple to temple stimulation can improve executive function but I have not yet tried that particular protocol.

I have a sneaking suspicion that Mike may beat me to that protocol.

We resumed tDCS several days ago (the motor cortex/secondary somatosensory cortex stimulation that ballerina kindly described), but things were so bad today that we dropped the evening treatment. Not sure whether we'll resume. I'm becoming convinced that she's not going to respond to this modality.

Ballerina--how is your treatment coming along?

I am so sorry your wife has not improved but I wouldn't abandon the treatment yet. Please consider a consultation with Dr. Jim Fugedy in Atlanta.

Iguanabill,

Sorry for my short reply earlier today but I had to leave to drive my daughter to the airport. (something I would have been unable to do prior to tDCS.)

May I ask what occurred that made things go south. I ask only because on several occasions I felt real miserable after treatment, but when I kept at it I reasoned that my symptoms were probably the result of a bad day, and not the tDCS. The reason I initially pushed on with treatments was because I found no reference in the literature that tDCS increases pain.

To answer your question about my treatment I continue to make slow but steady progress. Although the drive to the airport is not long, in the past the vibrations and bumps would have ignited a flare. Although I was very ready to get out of the vehicle upon arrival at the airport and upon arrival home, was very tired and my pain level was increased, I bounced back after a rest. I was able to wear a thin shirt for the duration of the trip which is pretty remarkable given the fact that this time last year I was spending most of the day in one room with a space heater.

I am happy to report that the dystonia is still absent from my hand and my hand is no longer turning purple, (although it is still cold and weak) I still have absolutely no full body joint pain.

It is too soon to tell with reasonable certainty, but the small area of sensitivity on my left shoulder has improved today. Time will tell if the new tDCS protocol is responsible but my hunch is that it is.

I am hoping the change in protocol will address the pain and extreme sensitivity in my neck and right pec area. (my plan is to use the current protocol for at least two weeks.)

I am not missing the side effects of the drugs I no longer take. My cat can now get into my lap. He has learned to slowly and gently walk onto my lap rather than jump.

My service dog no longer attempts to lick my left hand and arm. Prior to she was constantly trying to lick my limb. I have no swelling of my right limb.

Each day I wake up filled with gratitude that I have improved so much. I admit, however, to becoming greedy-I want remission. That is what I am working for now.

I hoped with all my heart that your wife would find relief with tDCS. Maybe you could resume after she has taken a break. I wonder what would happen If you resumed treatment during a flare. Perhaps keeping a log her symptoms each day might be helpful. Just a thought.

Gentle hugs for your wife from me!!!!

P.S. I recently hugged my service dog for the first time! She was as amazed an I was. She rewarded me with profuse tail wagging and doggy groans!

Newly diagnosed with CRPS and tDCS treatments?
 

Since I am a responder to tDCS (which in itself is amazing since nothing else worked) I often wonder how the course of my illness would have been effected had I begun tDCS treatments immediately upon diagnosis. So far the clinical trials take patients with a duration of at least 18 months or patients who have more advanced symptoms or who have had CRPS for years.

If anyone is out there whose diagnosis is within three months of initial trauma please consider tDCS as a part of your aggressive treatment plan. tDCS addresses cortical reorganization which is the root cause of the illness.

Had I known what I know now I would have engaged in aggressive physical therapy, taken no narcotics, used my TENS unit, taken Trazadone for sleep and treated with tDCS.

Hope this helps someone!

ballerina, we've resumed tDCS, but just once a day for most of the past 4 days. Despite using excedrin, she's still getting headaches with the motor cortex/secondary somatosensory cortex position, though they are a little less severe. We might pick up the pace soon, hoping to see some benefit.

A week ago, my wife had a trial injection of bupivicaine (actually, four injections at each of the S1-S4 nerve roots) to see whether neurolysis would be beneficial. Unfortunately, she had limited benefit (pain went from 9 to 6 during the 4-hour window of relief), and the injections actually made her pain worse in terms of both extent and intensity. Neurolysis is now off the table.

I think we're headed toward ECT again, if she will follow through with it. Things are very rough right now.

Thank you for sharing your update. Wonderful news!!!

Bill -

Sorry. Just saw this and the subsequent posts. Sorry to hear it's been so rough.

Mike

Discussed this with my doctor today and she's on board for trying out tDCS...yay! She wrote a script for the equipment so hopefully I will be starting treatment soon. I'm very excited...sure I will be asking loads of questions as I get started with it.

WOW CATRA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I an thrilled for you. I am so hopeful that you find the relief that you deserve. If I can help I am here, also feel free to PM me.

Is your doctor familiar with tDCS or did you have to bring her around? Did you get cleared to return to work?

I brought it to her but she surprised me by having some basic knowledge of the concept. Similar to her knowledge of RSD when I first saw her. She definitely has tried to learn about a lot of different things and when she is approached with a new thing she dives in and tries to learn more. She has been such a godsend. At any rate...I printed off the stuff on the Atlanta clinic website that you posted a while back (including the section on tDCS as treatment for CRPS/RSD...which was new since the last time I visited). She seemed very excited by it all and I found that very comforting. She is not afraid of new ideas and techniques...she's one of those really special people who completely and totally has the best interest of the patient in mind. She hates restrictions from insurance companies that limit number of different treatments and physical therapy sessions and stuff like that...she is of the opinion that things take as long as they take and so long as the patient is getting the treatment they need then THAT is what should matter. I love this woman and feel so blessed to have found her. She also takes as much time with you as you need in an appointment to go over everything you want to. The only downside to that is that you are often left waiting a long time in the room alone before she comes in...but if that's the sort of time I want her spending with ME then I certainly can't be annoyed that she spends it with ALL her patients. She's really a special woman and the most compassionate doctor I have ever met.

And yes...I was cleared back to work...just gotta wait and see now if they will let me come back...