update for those coming behind me
 

I had a set back by overdoing it and I got slammed. Most of the more miserable symptoms returned and I was once again stuck in one room most of the day with a space heater. I was surprised because I did nothing weight bearing, and nothing at all strenuous. Long story short, I won't do that again.

Apparently tDCS behaves similarly to Ketamine in that if one bumps themselves or overdoes it the effects of the treatment can go south. Fortunately, unlike Ketamine, I didn't shell out $15,00 for the treatment and now do not have to worry about how to afford a booster treatment.

I got back on track with my twice a day tDCS treatments for twenty minutes each and I am making steady progress.

I am up to about two hours wearing clothing on my upper body. This is great because there was a time when I could wear nothing but a tube top pulled very low.

When my husband asked me what I would like for Christmas I replied, "back up electrodes for my tDCS device."

Hope my experience is of help to others!

Ballerina,
I don't mean to sound ignorant but what is tDCS?:confused:

Sorry to hear that you had a setback. It doesn't matter what treatment you are going through (be it physical therapy, ketamine, tDCS, etc) setbacks can happen if you push yourself too hard. And it's so hard not to when you've been down and out for so long. I know for me I have slowly and steadily been making progress with my physical therapy (the TENS unit being a big help for my ankle pain...allowing me to do a little bit of weight bearing)...but I keep telling myself that I have to take it easy and slow. It's frustrating because the more stuff I can do, the more I want to do....but I know if I do too much too soon then I will be down for several days and it will be a big setback.

Good luck...I hope you can get back to where you were before. I've been following this thread with a lot of interest and once I can get myself back to work (which it looks like will happen in January) then I can start saving money and maybe give this a try. The TENS unit helps with my ankle but not with the pain in my entire upper body. Wearing clothes hurts...ALOT...but it sounds like yours is even worse. It took me months to build up enough of a tolerance to wear normal tops again...which is good because with the cold weather I think I would be sunk without something to protect me from the cold...but they still hurt and it would be nice to have some relief from that.

I'll keep you in my prayers...really hope you have even more success the second go around.

You absolutely do not sound ignorant! tDCS is only offered in three locations in the U.S. (four if you count my kitchen, Ha! Ha!)

Transcranial Direct Current Stimulation treats many forms of neuropathic pain by passing a weak direct electrical current through the brain. Please see my earlier posts in this thread for a description.

For a more in depth review of neuromodulation treatments please see below.

http://www.ncbi.nlm.nih.gov/pmc/arti...3/?tool=pubmed

Hope this helps!

Thanks. It did...:)

your so awesome!
 

Dear Teri

you are a Trail Blazer girl, im rooting for you! Thank you so much for sharing all this with us. what you aree testing on yourself today, may become "main Stream" treatment for us all in the future. may you receive a painfree life for Christmas.
hugs and blessings
Lori

Ballerina,
Thanks so much for this post! I am so very excited, because for me not having health insurance, it may be just exactly what I have been needing AND I can purchase the device myself...I won't be able to get it it until we get our income tax money, BUT the unit is LESS than my montly medication, so that in itself makes me even more excited!!

Back on track again
 

Here is an update on my home tDCS treatments, with the sincere hope that others will eventually follow and experience the kind of relief that I have experienced.

I will be seeing my neurologist next week after having not seen him for three months. I am quite sure he will not recognize me. When I last saw him I walked with a shuffle, I was hunched over, my hand was a useless claw and my arm was curled up like an injured bird wing, I was falling with the slightest provocation, I could not name the trash can in his office and I was wearing only a tube top on my upper body that was pulled embarrassingly low due to excruciating allodynia. I could not remember what I had for breakfast. I had the most miserable digestive symptoms. (This is only a very partial list of my symptoms) This time last year I was held captive in one room of the house with a space heater, only coming out for meals since I could not wear clothing on my upper body.

I had refused to use words to wind me up emotionally, words like "horrible","tragic", "overwhelming", "catastrophic", "horrific", etc., words that truthfully described my life.

I was and still am thankful that my condition was no worse than it was because I knew that at any moment it could take a nose dive, particularly if I had invasive procedures.

tDCS treatments have given me a new life. It has done what three years of physical therapy and countless sickening medications and endless specialists could not do. The dystonia in my hand is gone, my posture has greatly improved, my executive function has improved, I am falling less, I am beginning to use my hand, although it is still stiff. I can now wear a soft top for a few hours, which gives me time out from my one room prison cell.

Over the last several weeks I withdrew myself from all meds!!!!!!!!! (once again something that my docs and PT cautioned me not to do.) It was no cake walk and very scary but now I am slowly adding meds back a little at a time and when the process is through I know I will be taking less medication.

For those coming behind me tDCS is not a cure but a remarkable weapon against CRPS. If I over do it I am taken down. Since I know what takes me out I avoid it. Additionally, like Ketamine infusions, the treatment wears off and booster treatments are needed. Like Ketamine, it works for some and not others. Unlike Ketamine the procedure has no documented side effects, and is very affordable if done at home.

I am developing my own booster treatment schedule since I have found nothing in the literature regarding booster treatments.

The best thing about treating myself with tDCS is the reduction of fear about my future, fear about desperation leading me to invasive procedures that have a high risk of making me worse, fear of doctors pushing treatments that benefit their bank accounts more than my body, fear of not being able to afford treatment, fear of endless pain becoming an all consuming sink hole, fear of yet another visit to another doctor ending in disappointment, fear of becoming so mentally and emotionally depleted that depression would be as much of a problem as the CRPS, and fear of having little control over my own treatment.

Although I have a great treatment team it is still a team lacking in permanent solutions, like all other treatment teams, both good and bad.

From the day I was diagnosed I have felt as though I am either dragging physicians behind me, or fending off invasive and or barbaric procedures suggested by some of the top CRPS docs in the country. It has been a lonely, exhaustive, intellectually isolating and spirit depleting journey. Thankfully I believe the worst of my journey is over.

I am listing my suggestions for anyone wanting to try this treatment.

There are currently three places in the country doing tDCS. The major drawback of this limited treatment option is cost, both travel and accommodation and the cost of the treatment itself. A second drawback, which to me is a big one, is the limited treatment protocols.

My treatment at Beth Israel, for instance, consisted of one twenty minute treatment per day for five days. I do not believe that this protocol is enough to establish a positive response. Although I did have a positive response it was not until the end of the week. I was told that I could shell out more money and continue or return in a few months. (typically, insurance does not cover this treatment)

Additionally, the electrode protocol used for my treatment at Beth Israel is not as effective as the one I am using now. Although I have nothing to base this opinion on but a hunch, I suspect that since Beth Israel is conducting research on tDCS they are stuck in the "this is our research protocol" rut. I think there is a bit of navel gazing going on. Since my initial treatment I have discovered other treatment protocols that work beter. Picking the brains of folks at all three tDCS treatment facilities was very helpful to me and spurred the kind of critical thinking that led me to my current treatment protocol. My current treatment schedule is twice daily for two to three weeks.

If considering visiting a treatment center do your homework first. Research tDCS treatment protocols for your area of pain. Inquire ahead of time regarding the electrode placement used.

Better yet, see for yourself if you are a positive responder by purchasing the unit yourself and treating yourself twice a day for at least two weeks. It is a whole lot cheaper that a week long stay at the Holiday Inn and at least $1,000.00 for treatment. For less than $275.00 you can be set up at home. No monthly co-pays or worry about insurance coverage.

If you can use a tens unit you can operate tDCS technology.

PLEASE, PLEASE CONSIDER THIS TREATMENT PRIOR TO UNDERGOING RISKY AND INVASIVE PROCEDURES THAT HAVE POTENTIAL SERIOUS SIDE EFFECTS.

One final word. I believe that very soon some doctors will be offering this treatment in their practices. My own pain management physician has decided to offer it. I firmly believe that this treatment will be very slow to catch on with many pain management docs whose bread an butter comes from insurance reimbursed procedures. My doc does "procedures" three days a week. My hunch is that the cost of tDCS will be excessive since there is no money to be made from insurance reimbursement and the practice has to keep those dollars coming in. Additionally, what will happen to practice revenues if patients like me who are positive responders abandon the invasive and lucrative procedures forever in favor of tDCS. (I m sure my PM doc is asking himself that question.)

Skip this whole morass and purchase your own unit!

I pray for all of my fellow Complex Regional Pain Syndrome friends to have the kind of Happy New Year that I look forward to!

I'm so happy to hear how well you are doing after your setback! That is fantastic!

Hi need some help with locating sponge electrodes, last info not correct
 

Hi i need some help locating sponge electrodes, amrexusa dose not have the part #2-A103.
Found the activa dose ii amd wires through 3bscientific...thanks, new member margarsa.