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!

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...