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