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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   t.D.C.S. Update Could remission be within my reach and your's too? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/160980-update-remission-reach.html)

ballerina 01-13-2012 07:36 PM

tDCS-still improving
 
The most remarkable thing about my treatment is that atrophy in my arm is entirely gone. Although I still have atrophy in my hand I am working on that.

My range of motion continues to improve. The debilitating full body joint pain that has been my constant companion is now gone. Totally and absolutely gone! The allodynia is improving.

My quality of life, to say the least, is so much better! I am so grateful that the ever present drama in my life is vanishing. (constant researching new treatments and procedures, researching drugs, dealing with severe drug reactions, preparing for Dr. appointments with list of new questions, procedures and new treatment to try, educating health care professionals about state of the art treatments, the endless frustration of fending off physicians suggestions of invasive and potentially devastating procedures not backed by research data, always having one more option to try but fearing the desperation that would ultimately set in when that last option failed, feeling so ill that I could not walk, etc., etc., etc., etc.)

There is no question that tDCS has halted the progression of CRPS and is probably reversing it.

I am now beginning to think that remission may not be a long shot!

I truly hope my posts are of help to others! You all deserve the kind of improvement in quality of life that I have found!

lovefamilypets 01-15-2012 02:38 PM

Hi Ballerina,
I love your name by the way:) I use to be a dancer before I got CRPS, now I can barely walk and miss dancing a lot, but alas that is beside the point.
You mentioned there were three places in the US that offer TDCS. I was just wondering if you knew the name of those institutions?

Thank you so much for all your posts! What you are doing is truly amazing and inspirational to all of us that suffer with CRPS. I hope you continue to get relief from it!

voner 01-15-2012 04:32 PM

Quote:

Originally Posted by ballerina (Post 840962)
The most remarkable thing about my treatment is that atrophy in my arm is entirely gone. Although I still have atrophy in my hand I am working on that.

My range of motion continues to improve. The debilitating full body joint pain that has been my constant companion is now gone. Totally and absolutely gone! The allodynia is improving.

ballerina:

It is wonderful to hear your symptoms are improving!!!!

I have a couple technical questions for you:

1. How did you go about figuring where to locate the anode pads? I referenced a paper by Valle, et al. that says they place it over C3 according to the 10--20 system for EEG electrode placement…..

2. Why did you decide on 3" x 3" pads?

3. on the doctor subject -- you(or other people) are happy with the partnership between you and the doctor -- is the specialty (neurologist?)of the doctor important or just hunt around?? I have given up on them all and am using a nurse practitioner at my primary doctor's office. At least she has time to talk and time for me to explain…

Thanks.

voner 01-15-2012 04:40 PM

tDCS reference book
 
By the way -- for anyone interested in researching tDCS, TMS, etc. -- it is a relatively recent book that can certainly get you started. I got copy to read through interlibrary loan… name of it is:

Pain. Brain Stimulation in the Treatment of Pain

Editors: Helena Knotkova, et. al. , publisher is NOVA … publication date is 2010 -- so it is pretty close to being up to date.

It is a easy source for good summary articles. Includes a chapter on tDCS for CRPS, another one on tDCS for fibromyalgia pain, another one on safety of tDCS…….. you can look it up on Amazon.

voner 01-15-2012 05:06 PM

here are the technical specifications for the Fisher Wallace device:

15.0
DEVICE
SPECIFICATIONS PARAMETER
NOMINAL
VALUE

Output
Amplitude
(milliamperes) 0‐4
mA

Rate 15/500/15.000
Hz
Pulse
Width 33
microseconds
Maximum
Charge
per
Pulse 0.13
microcoulombs
On
Time
per
Burst 50
milliseconds
Off
Time
per
Burst 16.7
milliseconds

so it is a AC current device that pulses??, not DC device.... tDCS is very low mA DC current...

any other comments?

ballerina 01-15-2012 09:19 PM

Quote:

Originally Posted by lovefamilypets (Post 841481)
Hi Ballerina,
I love your name by the way:) I use to be a dancer before I got CRPS, now I can barely walk and miss dancing a lot, but alas that is beside the point.
You mentioned there were three places in the US that offer TDCS. I was just wondering if you knew the name of those institutions?

Thank you so much for all your posts! What you are doing is truly amazing and inspirational to all of us that suffer with CRPS. I hope you continue to get relief from it!

1) The Institute for Noninvasive Brain Stimulation of New York, Beth Israel Hospital www.newpaintreatment.org/
I was impressed when I recently checked the website. Now they are actively seeking patients for tDCS treatment of pain. When I sought treatment there this time last year I had to work to get in.

During my treatment I requested to meet the lead researcher, Dr. Helena Knotkova. She kindly spent considerable time with me and was delighted to have a patients who was so knowledgeable in tDCS and its application. I also requested to be evaluated by Dr. Ricardo Crucianni. I received a thorough evaluation from him on my last day of treatment. Please see prior posts regarding my thoughts on tDCS at Beth Israel.

2) There is a brand new Brain Stimulation Clinic in Atlanta, that just opened this month. www.transcranialbrainstimulation.com/
This is offered through a private pain treatment clinic operated by Dr. James Fugedy, who I highly recommend. I had a consultation with Dr. Fugedy last fall prior to the opening of the Brain Stimulation Clinic. I did not undergo tDCS treatment in his office because I already knew I was a responder.

In my opinion Dr. Fugedy is the top person in the country in terms of knowledge and actual application of tDCS to patients with chronic pain. He is impassioned about his work and a real decent sort of guy, in addition to being very funny.

3) The Brenson-Allen Center for Noninvasive Brain Stimulation, Harvard Medical School. http://tmslab.org/
This facility has treatment, research and education components. I have not visited this facility but the researchers have been very helpful regarding my requests for information , clinical trials and research material.

Hope this is helpful!!!!!!

ballerina 01-15-2012 09:22 PM

Quote:

Originally Posted by voner (Post 841516)
By the way -- for anyone interested in researching tDCS, TMS, etc. -- it is a relatively recent book that can certainly get you started. I got copy to read through interlibrary loan… name of it is:

Pain. Brain Stimulation in the Treatment of Pain

Editors: Helena Knotkova, et. al. , publisher is NOVA … publication date is 2010 -- so it is pretty close to being up to date.

It is a easy source for good summary articles. Includes a chapter on tDCS for CRPS, another one on tDCS for fibromyalgia pain, another one on safety of tDCS…….. you can look it up on Amazon.


Helena Knotkova has been at this for a good while. This Book would be a great place to start-But keep going.

ballerina 01-15-2012 09:39 PM

Quote:

Originally Posted by voner (Post 841514)
ballerina:

It is wonderful to hear your symptoms are improving!!!!

I have a couple technical questions for you:

1. How did you go about figuring where to locate the anode pads? I referenced a paper by Valle, et al. that says they place it over C3 according to the 10--20 system for EEG electrode placement…..

2. Why did you decide on 3" x 3" pads?

3. on the doctor subject -- you(or other people) are happy with the partnership between you and the doctor -- is the specialty (neurologist?)of the doctor important or just hunt around?? I have given up on them all and am using a nurse practitioner at my primary doctor's office. At least she has time to talk and time for me to explain…

Thanks.

Hi Voner,

Question #1 I did the C3 protocol when I was treated at Beth Israel and had a positive response. The researchers were pretty exacting about precise location. That kind of precision was necessary because they were primarily a research institution. The electrodes are big enough that they cover many areas so getting it close is good enough. You can use diagrams for the 10-20 system, use the percentages to find the location. (You can find the 10-20 by doing a google search, try EEG Measurement and Setup, or EEG 10-20 International System) After you find it pm me if you have any questions.

I have tried three other protocols, (electrode placements) two had no effect and one worked better.

Question# 2 3" pads are the standard electrode at the three treatment centers in the U.S.

Question # 3 I had to kiss a lot of toads before I found my Prince PM and Neuro docs. In addition to consulting with top Drs. in tDCS, I find it very beneficial to have a partnership with both a PM and a Neuro. It also helps that they are on the same page, particularly regarding invasive procedures and CRPS.

Don't give up on Docs. Finding a good fit can be very hard. The hardest part with having CRPS is learning what defines a good fit.

Hope this helps!

lovefamilypets 01-16-2012 02:48 PM

Thanks!
 
Quote:

Originally Posted by ballerina (Post 841580)
1) The Institute for Noninvasive Brain Stimulation of New York, Beth Israel Hospital www.newpaintreatment.org/
I was impressed when I recently checked the website. Now they are actively seeking patients for tDCS treatment of pain. When I sought treatment there this time last year I had to work to get in.

During my treatment I requested to meet the lead researcher, Dr. Helena Knotkova. She kindly spent considerable time with me and was delighted to have a patients who was so knowledgeable in tDCS and its application. I also requested to be evaluated by Dr. Ricardo Crucianni. I received a thorough evaluation from him on my last day of treatment. Please see prior posts regarding my thoughts on tDCS at Beth Israel.

2) There is a brand new Brain Stimulation Clinic in Atlanta, that just opened this month. www.transcranialbrainstimulation.com/
This is offered through a private pain treatment clinic operated by Dr. James Fugedy, who I highly recommend. I had a consultation with Dr. Fugedy last fall prior to the opening of the Brain Stimulation Clinic. I did not undergo tDCS treatment in his office because I already knew I was a responder.

In my opinion Dr. Fugedy is the top person in the country in terms of knowledge and actual application of tDCS to patients with chronic pain. He is impassioned about his work and a real decent sort of guy, in addition to being very funny.

3) The Brenson-Allen Center for Noninvasive Brain Stimulation, Harvard Medical School. http://tmslab.org/
This facility has treatment, research and education components. I have not visited this facility but the researchers have been very helpful regarding my requests for information , clinical trials and research material.

Hope this is helpful!!!!!!

Thanks Ballerina for this list! I'm bummed that there is nothing even remotely close to CA, but that often seems to be the case. Since I can't travel, I'll have to look into doing it on my own. Thanks for all your help!

ballerina 01-16-2012 05:04 PM

Hi Lovefamilypets,

I am so sorry your CRPS has gone full body.

The beauty of tDCS is that it has been effective for advanced and treatment resistant CRPS.

I have a thought. Consider educating your pain management doc, (or whatever doc is treating you) and see if he/she is willing to be trained to offer the procedure. Another option might be to see if your doctor would be willing to try to arrange a long distance consultation with Dr. Fugedy in Atlanta.

Caution: You may be more successful going this route with doctor who is not a PM doc since "procedures" constitute the bulk of practice revenue. A neurologist may be your best bet.

If you are comfortable doing your own research. By research I mean going to original journal articles, not just the abstracts, to see what protocols are most effective for areas you want to target.

Do you know what caused your CRPS spread? How long have you had CRPS? Is it more severe in one area?

fmichael 01-17-2012 07:02 AM

Quote:

Originally Posted by ballerina (Post 840603)
Just a quick update of my treatment with tDCS. I recently had a very minor sinus infection that did not require antibiotics. To my surprise my CRPS symptoms returned with a vengeance. The return of a stiff claw hand was very scary. After having a brief pity party I surmised that my illness, however slight, ignited an inflammatory response that snapped the CRPS to attention, much like spreads of CRPS ignited by surgical procedures.

I am assuming that I was correct because soon after the illness resolved the CRPS flare subsided.

Hope this is helpful to someone!

Dear, dear friend -

I am thrilled to read this thread and see not only what progress you are making, but the degree to which you have brought your doctors with you! It's really amazing all the way along. (The fact that I have been AWOL from the forum for much of the last six weeks is something I have to acknowledge but would just as soon pass over for now. Mea culpa.)

And as far as a couple of points you make, I think you're right on the money and it's helpful to me!

As to electrical stimulation and CRPS, the role of implant Motor Cortex Stimulation (MCS) has already received some attention in the literature, including in the treatment of dystonia, although as you know MCS is a FAR MORE INVASIVE PROCEDURE than tDCS. Here I just have a couple of abstracts. Motor cortex electrical stimulation applied to patients with complex regional pain syndrome, Velasco F, Carrillo-Ruiz JD, Castro G, Argüelles C, Velasco AL, Kassian A, Guevara U, Pain 2009 Dec 15;147(1-3):91-8 (link imbedded in title); and Pain relief and functional recovery in patients with complex regional pain syndrome after motor cortex stimulation, Fonoff ET, Hamani C, Ciampi de Andrade D, Yeng LT, Marcolin MA, Jacobsen Teixeira M, Stereotact Funct Neurosurg. 2011; 89(3):167-72. Epub 2011 Apr 13.

But what’s happened of significance is that we now have a model that explains why electrical stimulation, including my old unrequited flame, RUL ECT – Right Unilateral Electroconvulsive Therapy Treatment for CRPS, Michaels F Jr., Pract Pain Manage. 2008 March; 68-75 – actually benefit people with CRPS. And so long as tDCS is powerful enough to attack the underlying mechanism – and your recovery is compelling testimony in that regard – we can not only see how, but why it works. 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, which apparently demonstrates – to anyone with the training to read it – that CRPS is just another in a line of “thalamocortical dysfunctions” due to the generation of low-threshold calcium spike bursts by thalamic cells. (See, Thalamocortical dysrhythmia: A neurological and neuropsychiatric syndrome characterized by magnetoencephalography, Llinás RR, Ribary U, Jeanmonod D, Kronberg E, Mitra PP, Proc Natl Acad Sci U S A. 1999 Dec 21;96(26):15222-7.) Now, finally, the authors have come out with an accessible (to mere mortals) free-text book chapter on the subject: Central Pain as a Thalamocortical Dysrhythmia: A Thalamic Efference Disconnection? Walton KD, Llinás RR, Chapter 13 in Translational Pain Research: From Mouse to Man, Kruger L, Light AR, editors, CRC Press (2010). And check out what they have to say about stimulation, albeit not with tDCS:
The use of deep brain stimulation (DBS) as a treatment in several disorders was recently reviewed (Kringelbach et al. 2007b). DBS has proven to be a successful treatment in some types of pain (Kumar et al. 1997; Nandi et al. 2003; Bittar et al. 2005a, 2005b; Rasche et al. 2006; Yamamoto et al. 2006; Kringelbach et al. 2007a) and other instances of TCD, particularly in Parkinson’s disease (Benabid et al. 2003). The effectiveness of this therapy is consistent with the mechanisms postulated above: High-frequency stimulation could raise the resting potential of RT or intralaminar neurons above the level of T-type Ca++ channel deinactivation, and thalamic cells switch from bursting to tonic firing. The effectiveness of motor cortex stimulation in treating some cases of neuropathic pain (Carroll et al. 2000; Katayama et al. 2001a, 2001b) may be understood as resulting from top-down thalamic depolarization. It should be noted that the qualified success of this approach speaks to the challenge of modifying the thalamocortical loop using a depolarizer effectively situated outside the system. Recent advances using transcranial magnetic stimulation may similarly derive their effectiveness from a temporary rise in thalamocortical resting potential.
Now, as to your relapse with a cold, that too is consistent with what is known about one particular lingering inflammatory aspect of CRPS. Specifically, although most of the neuro-inflammatory action of CRPS occurs in the acute stage, there’s one character that hangs around for the duration: calcitonin gene-related peptide (CGRP). To begin with, check out the follow abstract, which I have color-coded in the hope that a few brave souls may follow along: See, Systemic inflammatory mediators in post-traumatic complex regional pain syndrome (CRPS I) - longitudinal investigations and differences to control groups, Schinkel C, Scherens A, Köller M, Roellecke G, Muhr G, Maier C, Eur J Med Res. 2009 Mar 17; 14(3): 130-5.
Abstract
OBJECTIVES: The Complex Regional Pain Syndrome I (CRPS I) is a disease that might affect an extremity after trauma or operation. The pathogenesis remains yet unclear. It has clinical signs of severe local inflammation as a result of an exaggerated inflammatory response but neurogenic dysregulation also contributes to it. Some studies investigated the role inflammatory mediators and cytokines; however, few longitudinal studies exist and control groups except healthy controls were not investigated yet.

METHODS: To get further insights into the role of systemic inflammatory mediators in CRPS I, we investigated a variety of pro-, anti-, or neuro-inflammatory mediators such as C-Reactive Protein (CRP), White Blood Cell Count (WBC), Interleukins 4, 6, 8, 10, 11, 12 (p70), Interferon gamma, Tumor-Necrosis-Factor alpha (TNF-a) and its soluble Receptors I/II, soluble Selectins (E,L,P), Substance-P (SP), and Calcitonin Gene-Related Peptide (CGRP) at different time points in venous blood from patients with acute (AC) and chronic (CC) CRPS I, patients with forearm fractures (FR), with neuralgia (NE), and from healthy volunteers (C).

RESULTS: No significant changes for serum parameters investigated in CRPS compared to control groups were found except for CC/C (CGRP p = 0.007), FR/C (CGRP p = 0.048) and AC/CC (IL-12 p = 0.02; TNFRI/II p = 0.01; SP p = 0.049). High interindividual variations were observed. No intra- or interindividual correlation of parameters with clinical course (e.g. chronification) or outcome was detectable.

CONCLUSION: Although clinically appearing as inflammation in acute stages, local rather than systemic inflammatory responses seem to be relevant in CRPS. Variable results from different studies might be explained by unpredictable intermittent release of mediators from local inflammatory processes into the blood combined with high interindividual variabilities. A clinically relevant difference to various control groups was not notable in this pilot study. Determination of systemic inflammatory parameters is not yet helpful in diagnostic and follow-up of CRPS I. [Emphasis added for some statistically significant findings, although the authors were apparently hoping for more.]

PMID: 19380284 [PubMed - indexed for MEDLINE]
Now here’s what CGRP does:
Neurogenic inflammation is also mediated by the release of the CGRP from sensory neurons [9,25]. CGRP does not affect vascular permeability but does induce neurogenic vasodilatation via a direct (i.e., endothelium-independent) relaxation of vascular smooth muscle. CGRP containing sensory nerves directly innervate the smaller arteries, coming into close apposition of smooth muscle cells expressing the CGRP (CRLR) receptor.

Notes
9. Brain, SD. Sensory neuropeptides in the skin. In: Geppeti, P.; Holzer, P., editors. Neurogenic Inflammation. Boca Raton: CRC Press; 1996. p. 229-244.
25. Peroutka SJ. Neurogenic inflammation and migraine: implications for the therapeutics. Molecular interventions. 2005 Oct;5(5):304–11. [PubMed]
Post-junctional facilitation of Substance P signaling in a tibia fracture rat model of complex regional pain syndrome type I, Wei T, Li WW, Guo TZ, Zhao R, Wang L, Clark DJ, Oaklander AL, Schmelz M, Kingery WS, Pain. 2009 Aug;144(3):278-86.

And here is a recent abstract on the general immunological aspects of CGRP, e.g., what may have brought it to the fore when you had your cold, Modulation of immune responses by the neuropeptide CGRP, Holzmann B, Amino Acids. 2011 Nov 24. [Epub ahead of print]
Department of Surgery, Klinikum rechts der Isar, Technische Universität München, Ismaninger Str. 22, 81675, München, Germany, holzmann@chir.med.tu-muenchen.de.

Abstract
The peripheral nervous system is connected with lymphoid organs through sensory nerves that mediate pain reflexes and may influence immune responses through the release of neuropeptides such as calcitonin gene-related peptide (CGRP). Local and systemic levels of CGRP increase rapidly during inflammatory responses. CGRP inhibits effector functions of various immune cells and dampens inflammation by distinct pathways involving the amplification of IL-10 production and/or the induction of the transcriptional repressor inducible cAMP early repressor (ICER). Thus, available evidence suggests that, in neuro-immunological interactions, CGRP mediates a potent peptidergic anti-inflammatory pathway.

PMID: 22113645 [PubMed - as supplied by publisher]
Now what, you might ask, do thalamocortical dysrhythmias and CGRP have to do with one another? There, I’m afraid I can only direct you to the tale of The Blind Men and an Elephant. In other words, and in so far as I know, those departments aren’t speaking with each other, yet. (A PubMed search of “thalamocortical CGRP” drew a blank.) To be continued . . . .

Mike


PS And thank you, I have ordered and look forward to reading Pain: Brain Stimulation in the Treatment of Pain (Disability Studies)
Helena Knotkova et al, editors, Nova Science Pub Inc. (2010).

iguanabill 01-17-2012 07:09 PM

Quote:

Originally Posted by ballerina (Post 841588)
Question #1 I did the C3 protocol when I was treated at Beth Israel and had a positive response. The researchers were pretty exacting about precise location. That kind of precision was necessary because they were primarily a research institution. The electrodes are big enough that they cover many areas so getting it close is good enough. You can use diagrams for the 10-20 system, use the percentages to find the location. (You can find the 10-20 by doing a google search, try EEG Measurement and Setup, or EEG 10-20 International System) After you find it pm me if you have any questions.

I have tried three other protocols, (electrode placements) two had no effect and one worked better.

Ballerina, I'm new here. I bought an electrophoresis unit several years and gave my wife some treatments (CRPS with pudendal/sciatic neuropathy), but didn't get anyhwere. I never felt like we pushed it enough; we gave up after 7 treatments in 9 days (interrupted over a weekend). I positioned the leads in the recommended fashion: cathode of right motor cortex (contralateral to her worst pain on left side), anode over left forehead (I'm rushed at the moment; hope I'm not stating anode/cathode backwards).

We decided to try again this week, as she has experienced a bad flare-up. I saw your posts last night, and you've inspired me to double our efforts, which we were actually contemplating (2x/day, two weeks). My question: which electrode placement do you think is working best for you? I certainly agree with your point that precise placement is not essential given the broad distribution of the charge.

bent98 01-22-2012 09:32 AM

I just wanted everyone to know Ballernia lost her password and is trying to get it back. She will respond soon.

iguanabill 01-23-2012 10:35 PM

Quote:

Originally Posted by bent98 (Post 843877)
I just wanted everyone to know Ballernia lost her password and is trying to get it back. She will respond soon.

Am I allowed to post my email address so that Ballerina can contact me offline?

Koala77 01-23-2012 11:44 PM

Quote:

Originally Posted by iguanabill (Post 844429)
Am I allowed to post my email address so that Ballerina can contact me offline?

It's never a good idea to post your private email address on any board because that opens you up to world-wide spamming. Instead, may I suggest that you persevere a little longer. Once you've been with us a little longer, and made a few more posts, you will be able to communicate with any other member here via PM (personal message).



Ballerina, if you're reading offline please know that if you contact Admin, they can reset your password..

ballerina 01-24-2012 07:29 AM

Quote:

Originally Posted by Koala77 (Post 844451)
It's never a good idea to post your private email address on any board because that opens you up to world-wide spamming. Instead, may I suggest that you persevere a little longer. Once you've been with us a little longer, and made a few more posts, you will be able to communicate with any other member here via PM (personal message).



Ballerina, if you're reading offline please know that if you contact Admin, they can reset your password..

Thanks Koala77, Chemar and bent helped me out!

ballerina 01-24-2012 07:38 AM

Quote:

Originally Posted by iguanabill (Post 842269)
Ballerina, I'm new here. I bought an electrophoresis unit several years and gave my wife some treatments (CRPS with pudendal/sciatic neuropathy), but didn't get anyhwere. I never felt like we pushed it enough; we gave up after 7 treatments in 9 days (interrupted over a weekend). I positioned the leads in the recommended fashion: cathode of right motor cortex (contralateral to her worst pain on left side), anode over left forehead (I'm rushed at the moment; hope I'm not stating anode/cathode backwards).

We decided to try again this week, as she has experienced a bad flare-up. I saw your posts last night, and you've inspired me to double our efforts, which we were actually contemplating (2x/day, two weeks). My question: which electrode placement do you think is working best for you? I certainly agree with your point that precise placement is not essential given the broad distribution of the charge.

Hi iguanabill,

I assume the device you are using is an iontophoresis unit? I have not come across any references in the literature of tDCS causing a CRPS flare. If not done correctly it can cause a burning sensation, which could certainly ignite a flare. Please send me a pm in more detail.

iguanabill 01-25-2012 12:53 AM

Quote:

Originally Posted by ballerina (Post 844520)
Hi iguanabill,

I assume the device you are using is an iontophoresis unit? I have not come across any references in the literature of tDCS causing a CRPS flare. If not done correctly it can cause a burning sensation, which could certainly ignite a flare. Please send me a pm in more detail.

Ballerina,

Yes, the device is a Phoresor II Auto unit. Sorry for the confusion, the flare up had nothing to do with tDCS; we're trying the tDCS again because of the flare. I have not figured out yet how to send a PM with this discussion board (I'm not finding a link), so I can't contact you that way.

At this point, we've only tried cathode stimulation of the right motor cortex, trying to address the area of worst pain in her left coccyx/perineal region. We've now done 17 treatments over the last 9 days with no obvious benefit thus far. Just wondering whether you have another arrangement for electrodes that you have found to work...and how YOU are doing with the self-treatment. I hope you're still making progress.

Koala77 01-25-2012 01:46 AM

Quote:

Originally Posted by iguanabill (Post 844863)
I have not figured out yet how to send a PM with this discussion board (I'm not finding a link), so I can't contact you that way.

If you click onto any member's name, you will see several options. The second one down says: Send a private message to *** Click that one to open up the private message option.

Another way is to go to your own home page. Click User CP (first on the left). Under private messages you will see an option to send new messages.

I hope that helps.

ballerina 01-25-2012 07:42 AM

Quote:

Originally Posted by iguanabill (Post 844863)
Ballerina,

Yes, the device is a Phoresor II Auto unit. Sorry for the confusion, the flare up had nothing to do with tDCS; we're trying the tDCS again because of the flare. I have not figured out yet how to send a PM with this discussion board (I'm not finding a link), so I can't contact you that way.

At this point, we've only tried cathode stimulation of the right motor cortex, trying to address the area of worst pain in her left coccyx/perineal region. We've now done 17 treatments over the last 9 days with no obvious benefit thus far. Just wondering whether you have another arrangement for electrodes that you have found to work...and how YOU are doing with the self-treatment. I hope you're still making progress.

Hi iguanabill,

Please provide more detail, i.e. the miliamp setting, the length of each treatment, the size of the electrodes, what you are using to attach the electrodes (very important since you don't want anything that conducts current)

iguanabill 01-26-2012 12:50 AM

Quote:

Originally Posted by ballerina (Post 844921)
Hi iguanabill,

Please provide more detail, i.e. the miliamp setting, the length of each treatment, the size of the electrodes, what you are using to attach the electrodes (very important since you don't want anything that conducts current)

Okay, Ballerina, here are the full details:

We are delivering the standard 2.0 mAMP for 20 minutes, resulting in a total dose of 40 mAMP minutes. She tolerates this okay.

We are using anodal stimulation (I incorrectly wrote cathodal stimulation in prior post), with the red (positive) lead over the right motor cortex (contralateral to the area of her worst pain, on the left side of her coccyx/perineal region), and black (negative) lead at the left supra-orbital position. Everything I've read suggests anodal stimulation of the motor cortex to be most efficacious for chronic pain.

We are using the following system components to deliver the current:

1) Iomed Phoresor II Auto iontophoresis device

2) 3" x 3" Amrex rubber pad w/ sponge insert (actually 2" x 2" contact surface with skin; 25.8 cm2)

3) pin to banana pin adaptors (to insert into the rubber pad)

4) (3) snap to pin converters (to connect between the electrophoresor's wires and the pin to banana pin adaptor)

I bought these >2 years ago, and tried to list the websites I purchased them from (still valid)**edit**

Again, my question is simple: are you finding a lead position that works better than that which we are using? If so, what is it, if I may ask? I hope you have continued to experience improvement.

iguanabill 01-26-2012 12:53 AM

Quote:

Originally Posted by Koala77 (Post 844883)
If you click onto any member's name, you will see several options. The second one down says: Send a private message to *** Click that one to open up the private message option.

Another way is to go to your own home page. Click User CP (first on the left). Under private messages you will see an option to send new messages.

I had already clicked on these items while trying to find a way to send a PM, but the options simply do not appear. I assume it's because I'm still too new and am not permitted to PM. Maybe this will change after a few more posts.

I did appreciate the advice, though. Thank you!

sberube 01-26-2012 09:06 AM

I read this thread with a lot of excitement. My wife has RSD in her left arm and I am considering purchasing this device ourself to perhaps work as a group here to post results and positioning. Has anyone else than ballerina tried this treatment themselves with success? I'd love to hear more input

sberube 01-26-2012 09:14 AM

Ballerina;
Would you consider posting a youtube video on how you use the unit and where you apply the pads? This is such an inexpensive option to try I think the more info we can learn and share it could help a lot of people out. Thanks so much

voner 01-26-2012 11:34 AM

Quote:

Originally Posted by iguanabill (Post 845200)
Okay, Ballerina, here are the full details:

We are using anodal stimulation (I incorrectly wrote cathodal stimulation in prior post), with the red (positive) lead over the right motor cortex (contralateral to the area of her worst pain, on the left side of her coccyx/perineal region), and black (negative) lead at the left supra-orbital position. Everything I've read suggests anodal stimulation of the motor cortex to be most efficacious for chronic pain.

.

iguanabill:

thanks for your post. Your questions are helping sort through the details of tdcs.

I would guess that you need to give ballerina a more specific description of of the location on the head you are placing your anodes/cathode...

from reading the research papers, I think the accepted paradigm to use is the EEG 10-20 system... most the researchers have put the For example, many researchers put the anode over the “C3” area (which correlates to the hand position for the Penfield brain map (I cannot post Web addresses yet -- I don't have enough postings)..

I'm curious about the same things you are. I am about ready to start some trials.

Thanks a lot for posting your information about the electrodes etc!! The part about the adapters to the banana plugs, etc. threw me for a loop for a while.. .. I kept on trying to figure out if I needed to order what other parts etc. etc.

So, anybody else reading this and also using the Square Amrex type rubber edged sponge electrodes---pay attention to the adapter part that iguanabill has stated. I ended up going down to a local electronic supply store and buying some banana plugs cutting the leads off the wires, and soldering banana plugs through the wire ends. I then tested the device on my multimeter to ensure the device was working correctly in putting out a steady 2ma.........but if I could have found some adapters -- I probably would've used the adapters that iguanabill used...

iguanabill 01-26-2012 02:01 PM

Quote:

Originally Posted by voner (Post 845283)
Thanks a lot for posting your information about the electrodes etc!!...if I could have found some adapters -- I probably would've used the adapters that iguanabill used...

The adaptors are very inexpensive. I just got a PM from Ballerina, so it looks like I can communicate that way. PM me and I'll give you the exact links for purchasing them (if I am allowed to do so)...but in the meanwhile you can probably find them yourself online at the following companies:

(1) 3" x 3" Amrex rubber pad w/ sponge insert (actually 2" x 2" contact surface with skin; 25.8 cm2) - Austinmedical
(2) pin to banana pin adaptors (to insert into the rubber pad) - Austinmedical
(3) snap to pin converters (to connect between the electrophoresor's wires and the pin to banana pin adaptor) - Balegoonline

These accessories worked for the particular stimulator I purchased. They attached to the (button?) snaps on the end of the leads that came with my stimulator. Ballerina listed sources for her purchases; I don't recall how similar they were to mine.

iguanabill 01-26-2012 02:04 PM

Quote:

Originally Posted by iguanabill (Post 845201)
I had already clicked on these items while trying to find a way to send a PM, but the options simply do not appear. I assume it's because I'm still too new and am not permitted to PM. Maybe this will change after a few more posts.

Bingo...now that I've posted >5 posts, the option to PM now appears!

iguanabill 01-26-2012 02:29 PM

Quote:

Originally Posted by voner (Post 845283)
iguanabill: I would guess that you need to give ballerina a more specific description of of the location on the head you are placing your anodes/cathode...many researchers put the anode over the “C3” area (which correlates to the hand position for the Penfield brain map (I cannot post Web addresses yet -- I don't have enough postings)...

voner: for the motor cortex position, we use the "C3" position on the top of the head between the ears, but as my wife's worst pain is below the waist and near the midline of her body, I keep the electrode close to the midline of her skull rather than more lateral, closer to the ear. If you check out a homunculus image online, you'll see where the different parts of the body correspond to the motor cortex (I've taught Anatomy and Physiology for many years, so I knew the homunculus would be informative). But bear in mind that the precise position isn't real important given the wide distribution of the electrical charge.

Many people use special elastic bands to secure the electrodes, but we use self-adhering ace wrap, which you can readily find at a drug store. We first secure the cathode (black) lead in the supra-orbital position on her left forehead with about a 20" strip of ace wrap. We then secure the anode (red) lead to the motor cortex using a similar stip of ace wrap. The ace wrap works perfectly fine.

iguanabill 01-26-2012 02:48 PM

I'll throw out one more suggestion. tDCS does not penetrate deep in the brain. There is a remarkably simple, non-invasive, cost-free method to stimulate deeper brain structures: it's called (caloric) vestibular stimulation.

You simply lie down in bed with a towell beneath your head, and then put ice cold water (using an eyedropper) into the ear contralateral to (on the opposite side of) your worst pain for 30-60 seconds. The cold stimulation will provoke nystigmus (eyes rapidely darting back and forth) and vertigo; you will probably want to keep your eyes closed, and you definitely do not want to be on your feet during this procedure! Functional imaging shows that the procedure activates a number of deeper brain structures, including the insula which are involved with pain processing.

You can search for the handful of papers exploring this form of stimulation at PubMed. Ramachandran's group claims remarkable and lasting pain relief from a single treatment in several CRPS patients. Most of the papers consist of case reports (an exception being central post-stroke pain). The lack of a definitive study for CRPS invites some doubt, but the procedure is definitely worth a try. Unfortunately, it appears to work much better for upper-body pain, so it hasn't benefitted my wife's condition.

My suggestion is to consider this treatment in combination with tDCS. I see no reason why you can't do the ice-water treatment once a day over an extended period of time.

lovefamilypets 01-26-2012 05:28 PM

Is TDCS the same things as TMS?
 
Hi Ballerina and others who have posted about this topic!

Unfortunately, I have no scientific background so reading about T.D.C.S has been a bit confusing for me.

However, I did find a doctor in Sacramento who is doing Transcranial Magnetic Stimulation for patients with depression. He seemed willing to look into TMS for chronic pain; it seemed like he inferred there might need to be a change in where the machine was placed on the head.

Anyways to my point, is T.M.S. similar to T.D.C.S.? Is it worth giving T.M.S. a try? Or is T.D.C.S. the only way to go?

I would greatly appreciate any info or advice in this matter. Thank you all for your posts about this topic. I hope this is something that helps more of us.

ballerina 01-26-2012 08:32 PM

Quote:

Originally Posted by iguanabill (Post 845200)
Okay, Ballerina, here are the full details:

We are delivering the standard 2.0 mAMP for 20 minutes, resulting in a total dose of 40 mAMP minutes. She tolerates this okay.

We are using anodal stimulation (I incorrectly wrote cathodal stimulation in prior post), with the red (positive) lead over the right motor cortex (contralateral to the area of her worst pain, on the left side of her coccyx/perineal region), and black (negative) lead at the left supra-orbital position. Everything I've read suggests anodal stimulation of the motor cortex to be most efficacious for chronic pain.

We are using the following system components to deliver the current:

1) Iomed Phoresor II Auto iontophoresis device

2) 3" x 3" Amrex rubber pad w/ sponge insert (actually 2" x 2" contact surface with skin; 25.8 cm2)

3) pin to banana pin adaptors (to insert into the rubber pad)

4) (3) snap to pin converters (to connect between the electrophoresor's wires and the pin to banana pin adaptor)

I bought these >2 years ago, and tried to list the websites I purchased them from (still valid)**edit**

Again, my question is simple: are you finding a lead position that works better than that which we are using? If so, what is it, if I may ask? I hope you have continued to experience improvement.

Hi Iguanabill,

It sounds like you are doing everything correctly. It sounds as if your wife is not going to respond to this protocol. I had a moderately good response to anodal stimulation of the motor cortex (c3) but many people don't and assume that they are not responders to tDCS.

I have had a better response to anodal stimulation of the motor cortex and secondary somatosensory cortices (M1 and S2.)

To place the electrodes for this protocol place the anode (red) over the auditory canal, just above the ear (contralateral to painful limb.) Be sure the top of the ear does not become caught under the electrode. Ditto for hair. Place the cathode (black) above the opposite eye.

Additionally, the literature suggests five days on and two days off, but I believe the primary reason is that researchers don't work on weekends. I go straight through with treatment twice a day, twenty minutes each until I plateau in terms of relief. I am still working out a booster protocol that works well for me. I will post when I have tweaked it.

I am also experimenting with additional protocols. Will report on successes and failures for the benefit of all.

Hope your wife gets some relief!!!!!!!!!!!!!

ballerina 01-26-2012 08:34 PM

Quote:

Originally Posted by sberube (Post 845260)
Ballerina;
Would you consider posting a youtube video on how you use the unit and where you apply the pads? This is such an inexpensive option to try I think the more info we can learn and share it could help a lot of people out. Thanks so much


Hi sberube,

What a good idea!!! Happily, since I am camera shy, there is already a good one out there. Please see the following:
http://www.neuromodulationlab.org/in...=13&Itemid=70#

Hope this helps!!!!!

ballerina 01-26-2012 08:41 PM

Quote:

Originally Posted by voner (Post 845283)
iguanabill:

thanks for your post. Your questions are helping sort through the details of tdcs.

I would guess that you need to give ballerina a more specific description of of the location on the head you are placing your anodes/cathode...

from reading the research papers, I think the accepted paradigm to use is the EEG 10-20 system... most the researchers have put the For example, many researchers put the anode over the “C3” area (which correlates to the hand position for the Penfield brain map (I cannot post Web addresses yet -- I don't have enough postings)..

I'm curious about the same things you are. I am about ready to start some trials.

Thanks a lot for posting your information about the electrodes etc!! The part about the adapters to the banana plugs, etc. threw me for a loop for a while.. .. I kept on trying to figure out if I needed to order what other parts etc. etc.

So, anybody else reading this and also using the Square Amrex type rubber edged sponge electrodes---pay attention to the adapter part that iguanabill has stated. I ended up going down to a local electronic supply store and buying some banana plugs cutting the leads off the wires, and soldering banana plugs through the wire ends. I then tested the device on my multimeter to ensure the device was working correctly in putting out a steady 2ma.........but if I could have found some adapters -- I probably would've used the adapters that iguanabill used...


Thanks Iguanabill and Voner,

I had forgotten that the adaptors were separate from the electrodes. Please forgive me all!

Wow Voner!!! Very cool!

I am so glad that I finally have some company. We won't be alone for long since tDCS has so many applications from treatment resistant depression to enhancing memory. I predict that college student will very soon be routinely taking these devises to college!

ballerina 01-26-2012 08:51 PM

Quote:

Originally Posted by lovefamilypets (Post 845396)
Hi Ballerina and others who have posted about this topic!

Unfortunately, I have no scientific background so reading about T.D.C.S has been a bit confusing for me.

However, I did find a doctor in Sacramento who is doing Transcranial Magnetic Stimulation for patients with depression. He seemed willing to look into TMS for chronic pain; it seemed like he inferred there might need to be a change in where the machine was placed on the head.

Anyways to my point, is T.M.S. similar to T.D.C.S.? Is it worth giving T.M.S. a try? Or is T.D.C.S. the only way to go?

I would greatly appreciate any info or advice in this matter. Thank you all for your posts about this topic. I hope this is something that helps more of us.


Hi lovefamilypets,

Food for thought:

TMS has a long history of success with treatment depression. tDCS, however, is more effective for chronic pain, is portable, cheap and carries no risk of seizure as does TMS. It sounds like your doc is not familiar with the application of TMS for chronic pain. If so you will, in effect, be paying for his training. I believe TMS for depression is not routinely covered by many insurances. Definitely not covered for the treatment of chronic pain.

You would save yourself lots of money by trying tDCS yourself.

Just my humble opinion.

ballerina 01-26-2012 09:12 PM

My Progress
 
Just a quick update on my progress with tDCS.

Today I walked outside for about a mile! I don't remember how many years it has been since I did that! It was a challenge and I had to rest and use my service dog for balance but I did it!!!! This time last year I could not even leave a small heated room let alone go outside. Even if I had been able to go outside my joint pain was so severe that I would be lucky to make it to the driveway.

I am still working to get off all meds (with the exception of LowDose Naltrexone and adderall.) I want to get off of Trazadone at bedtime since I am concerned about continued tooth decay. ( I am down to 25mg.) Quite an accomplishment!!! (I still take a laundry list of supplements which I will continue to take)

I have oxycodone for breakthrough nasty flares but have only used one pill in the last two months.

I am thrilled to report that my claw hand has not returned! I still have weakness but I am working very hard on strength and flexibility. (Still don't trust holding a glass or knife in that hand)

I am strictly adhering to anti infalm diet. (Now that the holidays are over it is much easier)

Although I did not have clinical depression I do feel more chirpy than I have in years.

Although I am very grateful for my improvement I admit to being a bit greedy. Thus I will be experimenting with longer periods of treatment as well as additional protocols.

Hope this helps someone else!!!!!!!

catra121 01-26-2012 09:27 PM

So very happy that things are going so well for you. I know what you mean about being greedy. Now that I can do a little I want to do EVERYTHING and have to remember that I still have limits so that I don't have setbacks. It's very frustrating when you can't do something you want to do but those are the times I remind myself how far I have come in the past few months.

You success has really inspired me and I will definitely be discussing tDCS with my doctor at my next appointment on Feb 10th. I think she will be very excited by this treatment and I know that I am personally very willing to do what it takes to make my quality of life the best it can possibly be.

ballerina 01-26-2012 10:00 PM

Quote:

Originally Posted by sberube (Post 845260)
Ballerina;
Would you consider posting a youtube video on how you use the unit and where you apply the pads? This is such an inexpensive option to try I think the more info we can learn and share it could help a lot of people out. Thanks so much

Hi sberube,

What a good idea! Happily for me since I am camera shy, it has already been done. Please see below
http://www.neuromodulationlab.org/in...=13&Itemid=70#

iguanabill 01-26-2012 10:43 PM

Quote:

Originally Posted by lovefamilypets (Post 845396)
Anyways to my point, is T.M.S. similar to T.D.C.S.? Is it worth giving T.M.S. a try? Or is T.D.C.S. the only way to go?

I have to agree with ballerina's remarks above; when one reads the literature, tDCS seems to have a stronger evidenciary basis for efficacy than rTMS. We blew over $25,000 on two separate facilities giving my wife rTMS. She didn't respond well. Part of the problem for her, however, was that she had to sit on her bum during the treatment (there is no getting around this), which is her most painful area. The treatment seemed unable to overcome the insult of additional pain provoked by sitting.

The first treatment targeted her left prefontal cortex area, where they ordinarily treat depression. The second, with Dr. Sheldon Jordan in Santa Monica, CA, whom we greatly admire and dearly appreciate, targeted both the depression area and her right (contralateral to her worst pain) secondary somatosensory cortex. He reasoned that most alternative brain regions lack "memory;" that is, deep brain stimulation, for example, only works when stimulation is continuous, but fails as soon as the signal is turned off. He believed that the secondary somatosensory cortex had sufficient memory to "remember" the change in activity well beyond the end of the treatment. I thought the idea was brilliant. My wife's brain was indifferent, however. After both series of treatments, we had to return to the one treatment that seemed to help her condition the most: electroconvulsive therapy (ECT). She really hated ECT, but it's very effective brain stimulation and, because our insurance covered it, we were able to use her retirement funds for other (largely futile) options.

Quote:

Originally Posted by ballerina (Post 845441)
I have had a better response to anodal stimulation of the motor cortex and secondary somatosensory cortices (M1 and S2.). To place the electrodes for this protocol place the anode (red) over the auditory canal, just above the ear (contralateral to painful limb.) Be sure the top of the ear does not become caught under the electrode. Ditto for hair. Place the cathode (black) over the opposite eye.

I like this idea, ballerina, as it reminds me of Dr. Jordan's approach. The secondary somatosensory cortex is deeper, but I imagine your electrode position just above the ear allows the current to penetrate it. Very interesting. Will definitely try this. However, unless one shaves, it's inevitable that hair will be under the electrode, so I'm confused by your comment. And for other readers, what ballerina surely meant was that the cathode (black) electrode is placed above (not over) the opposite eye. One thing to be careful about, I've read, is to keep the electrode well above the eye.

iguanabill 01-26-2012 10:53 PM

While we're dealing with brain stimulation, I know there are a LOT of pain patients who benefit remarkably from Calmare's electrostimulation device (with Scrambler technology). For this, multiple electrodes are placed surrounding, but not on top of, the most painful area. The stimulation supposedly travels to the brain, sending a "this is not painful after all" signal that changes the brain. It's also quite inexpensive, and you should know after the first treatment (though not in all cases) whether you are going to respond.

You can learn more at www.calmarett.com (I can now post links!). We had 9 treatments at the St. George, Utah, facility ($150 each) before Thanksgiving break. Again, my wife was a non-responder <sigh>. But, a lady from San Diego with severe total body CRPS, including a clenched hand like ballerina's, goes up regularly for treatments, as she can get her pain to a ZERO for several weeks following the treatments. We met several other patients who respond incredibly well. The treatment really does work.

ballerina 01-27-2012 03:47 AM

Quote:

Originally Posted by iguanabill (Post 845481)
I have to agree with ballerina's remarks above; when one reads the literature, tDCS seems to have a stronger evidenciary basis for efficacy than rTMS. We blew over $25,000 on two separate facilities giving my wife rTMS. She didn't respond well. Part of the problem for her, however, was that she had to sit on her bum during the treatment (there is no getting around this), which is her most painful area. The treatment seemed unable to overcome the insult of additional pain provoked by sitting.

The first treatment targeted her left prefontal cortex area, where they ordinarily treat depression. The second, with Dr. Sheldon Jordan in Santa Monica, CA, whom we greatly admire and dearly appreciate, targeted both the depression area and her right (contralateral to her worst pain) secondary somatosensory cortex. He reasoned that most alternative brain regions lack "memory;" that is, deep brain stimulation, for example, only works when stimulation is continuous, but fails as soon as the signal is turned off. He believed that the secondary somatosensory cortex had sufficient memory to "remember" the change in activity well beyond the end of the treatment. I thought the idea was brilliant. My wife's brain was indifferent, however. After both series of treatments, we had to return to the one treatment that seemed to help her condition the most: electroconvulsive therapy (ECT). She really hated ECT, but it's very effective brain stimulation and, because our insurance covered it, we were able to use her retirement funds for other (largely futile) options.



I like this idea, ballerina, as it reminds me of Dr. Jordan's approach. The secondary somatosensory cortex is deeper, but I imagine your electrode position just above the ear allows the current to penetrate it. Very interesting. Will definitely try this. However, unless one shaves, it's inevitable that hair will be under the electrode, so I'm confused by your comment. And for other readers, what ballerina surely meant was that the cathode (black) electrode is placed above (not over) the opposite eye. One thing to be careful about, I've read, is to keep the electrode well above the eye.


Wow Iguanabill,

I am so very sorry for the numerous treatment failures your wife and you have endured. I so hope that you both find success with tDCS. At least you can try different protocols in the comfort of your home without breaking the bank.

I apologize for the confusion regarding hair impeding the electrode. When using this particular electrode placement close, direct contact with the scalp can easily be impeded if the top of the ear becomes lodged under the edge of the electrode when being wrapped with ace bandages. For some reason, my hair easily becomes lodged under the electrode or above my ear just under the edge of the electrode. Since I do my treatments without assistance, and have limited range of motion in my right arm, this might be more of a problem for me than for others.

Thanks for the clarification regarding cathode placement-so corrected in my prior post-above the eye.

I am keeping your wife in my prayers that tDCS gives her the kind of relief I have found!!!!!!!!!!


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