t.D.C.S. Update Could remission be within my reach and your's too?
 

My journey is very similar to other folks with CRPS. My options, however, may be more limited than many due to drug sensitivities. Ketamine is out of the question because I am allergic to it. I have grown weary of the tired advice that my pain needs to be better managed by drugs. I made the decision early on to heed the warning of research regarding Narcotics only increasing neuropathic pain long term.

Having had my share of frustration regarding what the medical profession has to offer me, most of what has helped me I have discovered from exhaustive research. I am fortunate that my treatment team has been open to trying whatever I bring to the table.

Since I decided early on that my thrust was going to be treating the cause of my pain as opposed to treating the symptoms I targeted anything that would address CRPS and brain plasticity.

Success with Graded Motor Imagery and Mirror Therapy, led me to Transcranial Magnetic Stimulation. I was turned down at three locations because I did not have clinical depression. When I discovered a t.D.C.S. Clinical Trial at Beth Israel in NYC I applied but was rejected. I appealed to the lead researcher and was treated as an outpatient last January.

While receiving the treatment I asked non-stopped questions of the lead researcher and physicians. I was struck with the simplicity of the treatment and commented that I believed that this treatment could be easily performed by patients in the comfort of their own homes, much like the operation of a TENS unit. That comment, like many of my comments to members of the medical profession, was not well received.

Since I had such a positive response to the treatment I decided I would attempt to convince my PM doctor to become trained and to offer the treatments. Although he initially agreed and I prepared an extensive stack of related research, prepared a detailed list of equipment needed with the most cost effective place to purchase the equipment as well as located resources for his training, after seven month of waiting it has not happened.

I wanted an additional series of treatments but could not afford the cost of putting myself up in NYC and shelling out $1,000 for the one week treatment. Fast forward to today. I took all that I learned, purchased the device and I am on my second week of treating myself. I am having a remarkable response.

Transcranial Direct Current Stimulation uses weak electrical current to affect brain plasticity by modulating the excitability of neurons. Think of it as recharging a car battery with jumper cables. The current is delivered by two saline soaked sponges applied to the scalp. The anode (+) stimulates the area under the electrode and the area under the cathode(-) is inhibited.

This procedure is quite safe and has minimal side effects, one cannot build up a tolerance to it, and it can be repeated indefinitely. It is effective for treatment-resistant chronic pain-everything from Fibromyalgia, Migraines, MS, to Tinnitus to depression and memory problems.

My first series of treatments last January ended my gastroparesis symptoms and they have not returned. All of the other gains I made in symptom reduction eventually wore off, similar to the way symptoms return with Ketamine infusions.

In only one week of treating myself for twenty minutes twice a day my tinnitus has vanished, my teeth clenching due to pain is reduced, my posture is improving, my right hand is no longer clenched. I am no longer sleeping with a bungee cord attached to my wrist and the bottom of my bed to keep my arm from curling up for eight hours at a time. I am able to wear a top for up to an hour and a half. (That's right-I can't wear anything on my upper body for any extended period of time- which means I am confined to one room of the house with a space heater, only half clothed) My range of motion is improving. Yesterday I unloaded the dishwasher for the first time in three years! Typically my body is covered in bruises because of falls. Although I have bruises on my abdomen and legs from a fall prior to beginning treatment about a week ago I have not fallen since I began treatment. By evening I am usually wiped and feeling irritable so I excuse myself and take an epson salts bath. For the past three evenings my husband has enjoyed my company so much that he insists I still take the bath but he comes in the room with me.

Two days ago was a most dreary raining and gray day. I looked out the kitchen door and noticed the poison ivy vine curling its way up the downspout. It had been a constant source of aggravation because I could not pull or dig it up. Suddenly is was a gorgeous orange and gold work of art. When I looked past it down the street I noticed the red and gold trees against the gray sky. The were absolutely beautiful. I had not noticed one single color of fall.

This is called not being able to see the trees for the pain.

My response has been truly remarkable and each day I see improvements. My plan is to continue treating until I see no additional improvements. I will then either wait until the treatment wears off or experiment with a booster treatment schedule.

The equipment consists of an Iontophoresis device used by physical therapists to deliver medication by way of direct current through the skin to the underlying tissues. The unit is powered by a 9 volt battery.

Additional supplies include sponge electrodes soaked in saline solution and wires (the kind used with a TENS unit)

I commented to my physical therapist last week that had she used the Iontparesis device on my brain, rather than on my shoulder when she first began treating my pain I would have probably gone into remission. She was less than pleased with my comment and stated that she would be recording in my chart that she did not condone my current use of the device. When I asked her if she had seen this kind of progress from any of her treatments in the last three years she admitted that she had not.

Oh well, onward and upward. I am either dragging the medical profession behind me or leaving them behind.

I would encourage any newly diagnosed CRPS folks to try this treatment for possible remission. There are many different protocols to try if pain relief does not happen on the first try.

I am an "old and cold" CRPS patient. Given the severity of my pain and other symptoms and the positive response I continue to have I would encourage others to consider this treatment.

Consider the costs and risks of a gold standard CRPS treatment, Ketamine infusions and the boosters that will be needed for life. A recent post detailed a total cost of $15,000 for a visit to Kirkpatrick for a round of Ketamine infusions.

I estimate my lifetime cost of treatment with tCDS to be at most $1,500.

Why has my pain management doctor not yet offered this treatment?????? I don't know. Food for thought-consider that pm docs generate most of their revenue from procedures, many of which are invasive, risky, or potentially dangerous to CRPS patients.

Hope this information is helpful!!!!!!

Dear Teri -

This is very exciting! And I am thrilled by your results.

I imagine the reticence of your doctors and physical therapist may have a lot to do with any potential risk in using a medical device for an off-label fashion, on the brain itself.

Quickly looking under PubMed, I was struck by the fact that a search of “Transcranial direct current stimulation CRPS” turned up no hits whatsoever, while a search of ” Transcranial direct current stimulation pain” was considerably more productive, with a total of 62 articles. And as to the reticence of the medical community to go off-label with tDCS, that may be “explained” – as these things go – by Arul-Anandam AP, Colleen Loo C, Perminder Sachdev P, Transcranial direct current stimulation - what is the evidence for its efficacy and safety? F1000 Med Rep. 2009; 1: 58, online text @ http://www.ncbi.nlm.nih.gov/pmc/arti...000000058.pdf:

Implications for clinical practice
The experimental findings described suggest that tDCS may emerge as a non-invasive therapeutic modality in the future, particularly for MDD, though there is a need for further replication in clinical trials, and clarification of the subgroup of patients most likely to benefit, before it can be recommended for clinical use. With a stronger evidence base, tDCS may present an attractive addition or alternative to available treatments for depression, particularly given its comparatively mild side-effect profile. For example, it may have a role in the treatment of patients unable to tolerate the side effects of antidepressant medications, and possibly in medication-refractory depression, if subsequent trials show efficacy in this subgroup. Moreover, tDCS has several advantages over other non-invasive forms of brain stimulation, such as transcranial magnetic stimulation: it is less expensive, less cumbersome and, therefore, more mobile, and may have longer lasting effects [31]. tDCS could thus be relatively easily implemented in a clinical setting. The evidence base is currently small, however, and more studies are needed before it can be recommended for general clinical application. In particular, a large multi-centric clinical trial is warranted to establish its efficacy and clinical utility. It is also too early to say whether optimal stimulation parameters have been discovered, and further work is necessary to establish this. [Emphasis added.]

Note
31. Fregni F, Freedman S, Pascual-Leone A: Recent advances in the treatment of chronic pain with non-invasive brain stimulation techniques. Lancet Neurol 2007, 6:188-91.

But at least the abstract to the paper by Fregni, Freedman and Pascual-Leone, who are among the top neuroscientists in the world, ends on what for many pain patients is the same frustrating note:

Abstract
BACKGROUND: Brain stimulation is a technique that can guide brain plasticity and thus be suitable to treat chronic pain-a disorder that is associated with substantial reorganisation of CNS activity. In fact, the idea of using invasive and non-invasive brain stimulation for pain relief is not new. Studies from the 1950s investigated the use of this therapeutic method for the treatment of chronic pain. However, recent advancements in the techniques of non-invasive brain stimulation have enhanced their modulatory effects and thus become a new, attractive alternative for chronic pain treatment. RECENT DEVELOPMENTS: Recent studies with non-invasive brain stimulation--eg, repetitive transcranial magnetic stimulation (rTMS) and transcranial direct current stimulation (tDCS)--using new parameters of stimulation have shown encouraging results. These studies explored alternative sites of stimulation, such as the secondary somatosensory cortex (rather than primary motor cortex) for the treatment of chronic visceral pain and new parameters of stimulation, such as repeated sessions of tDCS with 2 mA for the treatment of chronic central pain. WHERE NEXT?: The investigation of non-invasive brain stimulation for therapeutic effects is in its at initial stages; but the preliminary data make us optimistic. Several questions still need to be addressed before any firm conclusion about this therapy is made. Other parameters of stimulation need to be further explored such as theta-burst stimulation and the combination of tDCS and rTMS. The duration of the therapeutic effects is another important issue to be considered, especially because the current devices for brain stimulation do not allow patients to receive this therapy in their homes; therefore, maintenance therapy regimens, as well as the development of portable stimulators, need to be investigated. Further trials must determine the optimum parameters of stimulation. After that, confirmatory, larger studies are mandatory. [Emphasis added.]

PMID: 17239806 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17239806

Accord, Rosen AC, Ramkumar M, Nguyen T, Hoeft F, Noninvasive transcranial brain stimulation and pain, Curr Pain Headache Rep. 2009 Feb;13(1):12-7, online text at http://www.ncbi.nlm.nih.gov/pmc/arti...ihms110681.pdf; O'Connell NE, Wand BM, Marston L, Spencer S, Desouza LH, Non-invasive brain stimulation techniques for chronic pain. A report of a Cochrane systematic review and meta-analysis, Eur J Phys Rehabil Med. 2011 Jun;47(2):309-26 at 324, (noting need in future studies for participant blinding when tDCS doses exceed 1 mA) online text @ http://www.minervamedica.it/en/freed...3Y2011N02A0309

Essentially, this may be yet another case of coming down to having the money to do the requisite studies. And unless a pharmaceutical company or an equipment manufacturer is willing to shell out millions of dollars for a “large multi-centric clinical . . . to establish . . . efficacy and clinical utility,” which may not be likely with your estimate of lifetime per patient revenues of only $1,500 – compared for instance to what a manufacturer clears for the sale of an SCS unit – we can’t except the private sector to foot the bill. Nor, in this age of incessant fiscal restraints, are we likely to see much assistance from the NIH, where chronic pain has never been one of its priorities.

That said, I came across one more (very recent) free article that makes for an encouraging read. Check out out:

Ross LA, McCoy D, Coslett HB, Olson IR, Wolk DA, Improved proper name recall in aging after electrical stimulation of the anterior temporal lobes, Front Aging Neurosci. 2011;3:16, Epub 2011 Oct 12, online text @ http://www.ncbi.nlm.nih.gov/pmc/arti...i-03-00016.pdf

Abstract
Evidence from neuroimaging and neuropsychology suggests that portions of the anterior temporal lobes (ATLs) play a critical role in proper name retrieval. We previously found that anodal transcranial direct current stimulation (tDCS) to the ATLs improved retrieval of proper names in young adults (Ross et al., 2010). Here we extend that finding to older adults who tend to experience greater proper-naming deficits than young adults. The task was to look at pictures of famous faces or landmarks and verbally recall the associated proper name. Our results show a numerical improvement in face naming after left or right ATL stimulation, but a statistically significant effect only after left-lateralized stimulation. The magnitude of the enhancing effect was similar in older and younger adults but the lateralization of the effect differed depending on age. The implications of these findings for the use of tDCS as tool for rehabilitation of age-related loss of name recall are discussed. [Emphasis added.]

PMID: 22016735 [PubMed] PMCID: PMC3191456

http://www.ncbi.nlm.nih.gov/pubmed/22016735

You bring us all hope.

Mike

Dear Teri

I am i tears of JOY for you sugar! this is amazing for us all! I have my case worker at my insurance company seeing if it is covered for a rental.
I will email him your comments too so he can see your results and i will take a copy of it to my new drs office appt tomorrow with my new primary care doctor.
continued great success wishes to you!

Very exciting. Can you give details on where you purchased the unit and what you do for your treatment?

Liz

The first thing you need to do is determine the most effective protocol for you pain (The placement of the electrodes). The protocols can be easily found. I started by doing a Pub Med search of Transcranial Deep Current Stimulation/upper limb CRPS. Some of the studies were readily available and others I obtained. You may purchase articles of interest or find someone who is either a staff member or student at a large university that has a medical school. The protocols are contained in the methodology section of the articles. You may also do a search of just protocols.

The equipment used for my original treatment at Beth Israel in NYC was an Ionto Phoresis unit by Iomed. By the time I decided to treat myself this particular unit had been discontinued. The unit I use now is advertised as the replacement unit for the Iomed model. The device is a Trivarion Activa Dose Phoresor. The wires needed are standard TENS unit wires. The electrodes are square sponge electrodes, which must be soaked in Saline solution. They are held in place with ace bandages.

I have used two different protocols. Both were helpful, but the current one has been more helpful. When I first underwent treatment is was a series of five day treatments each lasting twenty minutes. I currently treat twice a day for twenty minutes. When I am seeing no additional benefit I will stop treatment.

Please keep in mind that this is not a cure. Benefits eventually wear off but then the treatment is repeated.

Hope this info is helpful!

http://www.tmscenterofnewyork.com/

What about transcranial magnetic stimulation Can that help for neuorpic pain? I see the website above markets it as treating depression and alot of insurance companies accept it.

Yes, it can relieve neuropathic pain. My health insurance would only cover it for clinical depression. I could find no one who would treat me even out of pocket because I do not have clinical depression. Additionally transcranial magnetic stimulation has more side effects.

My physical therapist is finally warming up to my tDCS home treatments. She recently commented that she guessed "it would be OK for me to use the device because I "have a doctorate, after all, it's not like you are a bricklayer." In total astonishment I asked her if she felt comfortable providing a bricklayer with a TENS unit to use at home. She replied, "Of course I would." When I asked her to define for me how the technology of tDCS is substantially different from that of a TENS unit she was stumped. Finally she stated that TENS units are not experimental and tDCS is. I then suggested that perhaps she should let Blue Cross/Blue shield know that because even though TENS units have been around for 40 years, I was required to purchase my TENS unit out of pocket because it was considered to be experimental. I reminded her of her skepticism when I suggested that graded motor imagery and mirror therapy might help me. Now she uses both of these treatment modalities with other patients.

Maybe she should be paying me.

Please do not be intimidated by this treatment. It is not rocket science. I am still seeing improvements each day. Probably the best thing about my treatment is the decrease in the numerous sensations that can make us nuts, i.e. dizziness, tingling, freezing cold one minute and sweating the next, joint aches and pains, headaches, weird vision issues, a general overwhelming feeling of overall feelings of being unwell, extreme reaction to minor aches and pains like bumps, paper cuts, burning, stiffness, reactions to loud noises and vibrations, and sensitivity to touch and temperature changes. This treatment will not cure me but it is making it easier to manage the degree to which I suffer.

I hope my journey can help others.

Wishing everyone a Happy Thanksgiving!

Hello Ballerina...

I'm so happy and proud of you...for your spirit and will to dig and never give up...RSD has a way of dropping us to or knees without much energy left to fight... It is so nice to having refreshing news... I support you and I appreciate all that you have to share!!!

Have a really wonderful Thanksgiving to you and all of our friends here!!!

Hugs, Kathy

http://www.fisherwallace.com/?gclid=...FUdn5Qod6GersQ

Has anyone seen this device?

Seems to be similar device sold with a RX.



Here is link to instruction manual. I didnt see anything about nerve pain.

http://www.fisherwallace.com/uploads...tionManual.pdf

This is not tDCS. It is CES (Cranial Electortherapy Stimulation.) This device was grandfathered in at the time that the FDA began regulating stimulators and medical devices. It would likely not be approved today, at least not without substantial solid clinical trials.

Personally, I would avoid it. However if there is a money back guarantee, maybe you have nothing to loose.

still making progress
 

I am beginning to wonder if the tDCS treatments have halted the progression of the CRPS. The treatments have certainly calmed down my sympathetic nervous system. The atrophy is improving, as is my range of motion. I can now open the refrigerator without quickly kicking it closed in pain, followed by a fall due to balance problems. I have not fallen since I began treatment. My reaction to noises and vibrations is improving. I am wearing clothing on my upper body for up to three hours at a time, which means I am not held prisoner in one room of the house with a space heater 24/7.

The most amazing thin is the stiff claw position of my hand is totally gone. The debilitation full body joint pain that made the aggressive home PT program that I developed a torture to implement has gone from a level 7 to a level two. My program consists of twenty minutes on and twenty minutes off of some form of exercise all day long with a break for a nap in the morning and the afternoon. I believe this program has kept me from becoming berdridden. I used to watch the clock and by the end of each twenty minute segment I was totally drained. Now I am fatigued but in much less pain at the end.

I have not hit the level 9 pain that was at least monthly if not a weekly event. I have not had one flare since beginning treatment.

My daughter took me shopping for a Christmas present for my husband. This time last year when I went shopping for his gift I landed in the emergency room.

I can only imagine how tDCS could improve CRPS for those whose symptoms are not as sever as mine.

I am here to help anyone who is interested.

I for to ask you, how many treatments have you done with your home unit?

You also mentioned to me its great for depression and mood. Do you see you mood imporving more and more as you continue with the treatments?

You also said you are now able to wear clothing for 3 hours, what happends after 3 hours you get burning pain?

Thanks again for your willingness to help others. God Bless.

I have treated myself for a little over two weeks, twice a day for twenty minutes each.

After three hours of wearing clothing I gradually start to experience searing pain if I leave the clothing on. However, I originally could not wear anything for even a minute. I would have to pin my hair up and slap gel on the stray hair or it felt like a hot knife on my shoulder neck and back.

There is a lot of research on tDCS and intractable depression. Remarkably, I do not have clinical depression, since the beginning of my journey with CRPS I have felt optimistic and hopeful that I would find treatments to help me or put me into remission. Since treating myself with tDCS I have been more chirpy and the irritability that sets in by evening has been reduced. With regard to your question about my mood improving more and more, just about everything is improving more and more.

Many of the clinical trials use a five day treatment schedule once a day, some setting at 1 milliamp. Since I received 2 milliamps at Beth Israel, that is the setting I continue to use. Recently, there has been research interest in expanding the number of days and treating twice a day instead of once. Since I am having a good response I will be continuing my current treatment schedule until I see no additional benefits.

I am just beginning to allow myself to feel that the days of lying on the floor in pain, begging for God to take me are over.

I have had no improvement, however, in the pain in my pec and neck areas. My hunch is that I have to find the correct protocol to address it. I am currently in the process of researching protocols to try.

I have learned through trial and error the do's and don'ts when treating with tDCS. If anyone is interested I can post them.

Hope this helps!

Please post them.

t.C.D.S. Do's and Don'ts
 

1) Before activating the device be sure the wires are securely connected to the electrodes. Occasionally they can come loose while being wrapped in ace bandages.

2) Remove all hair spray, gel and conditioner before treatment and wipe the scalp/skin with an alcohol prep pad.

3) Do not apply electrodes to areas that have cuts, rashes etc.

4) During treatment you may be seated or recline, but do not walk around. It is best to rest during treatment.

5) Sponge electrodes should be wet enough to slightly drip. If not wet enough they can cause skin burns.

6) You can make your own saline solution. It is cheaper than buying it. Mix 1/4 teaspoon salt with 8 ozs. of salt water.

7) Electrodes must be wrapped snugly but not too tight or they can cause a flash of light across the retina or skin burns.

8) Set the milliamp dial after the electrodes are in place and then plug in the the electrodes and activate the device. Plugging the electrodes in too soon can cause a white flash across the retina (not dangerous, just annoying.)

9) Don't use phones of any kind during treatment-you will get a shock (not dangerous, just startling) Ditto for computers microwaves, etc.

10) Slight skin irritation may occur. Application of an aloe lotion helps.

11) Wait at least 8 hours between treatments.

12) After the first few days of my most recent round of tDCS I experienced headaches. (Research suggests that the sham group also reported headaches)

13) Treating later than 7:30 pm disturbs my sleep. Treating earlier enhances my sleep.

Hope this helps!

I saw my PM doc today and he was amazed with my progress. He indicated that he would not have expected this kind of result from Ketamine infusions. He has decided to offer tDCS to his other CRPS patients in addition to those with Fibromyalgia and migraines-conditions that are treatment resistant like CRPS, and are frequently accompanied by clinical depression.

I suggested the treatment to a coworker of my husband who has CRPS and is also treated by my PM doc. She went to Beth Israel for a week long series of tDCS prior to trying Ketamine infusions. Since she had the same kind of response to tDCS that I did she has decided not to have Ketamine infusions. She is now off narcotics, which she has taken for 6 years.

My PM doc has blocked out an hour of his schedule next week to observe my treatment.

To say that I am overjoyed at my improvement is an understatement! I am thrilled that other folks in my neck of the woods will have a chance at what I have experienced.

For those who cannot afford Ketamine or who are concerned about the side effects, tDCS is quite safe, affordable and can produce results as good as or better than Ketamine.

Best to all!!!!

It think its great you are able to help others. This may be something I will try and if it works I will be bugging you more.

Godbless

Greg

Dear Ballerina...

Can you post the link where you purchased the unit, please.. Also do the leads come with the unit?? Or.. Call me..thanks



Thanks, Kathy

The unit I use is the Activa Dose II. I just came across a site that offers it for only $225.00 Item # w64153. The company is 3B Scientific www.a3bs.com, 888-326-6335.

They also have the lead wires for only $6.95, Item # w53111.

Sponge electrodes can be purchased from Amrex, www.amrexusa.com, 800-221-9069, Item # 2-A103.

I suggest you do a search to see if you can get the device even cheaper. Just google "Iontophoresis device." The prices seem to be dropping. Also some sites require a script. Even the ones that request a script- if you order online you can many times by by pass it.

Hope this helps!

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.

Guidance needed to locate products you mentioned
 

I found the Activa Dose II and the wires at 3b scientific, but the sponge electrodes I cannot find. amrexusa does not list the product or using the item code #2-A103. :confused: So can you tell me where the last place you ordered it from, ect it would be appreciated. getting the md order will be the easy thing. After already paying thousands of dollars for meds, IV's , hyperbaric chamber, ect....we are willing to try anything. The no disposable ones are the ones I think you are using. Thanks, M:)

I found the electrodes today on Banner Therapy Products Part # 55-100 size 3 inches. Mine are reusable. I rinse the sponges and let them air dry.

Great appointment with my neurologist today!
 

I had not seen my neurologist in three months. He was amazed that my posture is almost normal, my balance has greatly improved, the CRPS sores that had been occurring with regularity have vanished, the allodynia has been substantially reduced, my sensitivity to noises and vibrations has improved, I have not had pain reaching above the level of 6 out of 10 when level 9 was not uncommon, my episodes of profuse sweating and racing heart rate have improved as well as GI issues, I can hold a pen, button my sweater, (which I can now wear for a few hours at a time) wear a ring on my hand, and most amazing, the claw hand is gone!!!!!!

My neurologist stated that he wished he could take credit for my improvement and stated that he had never seen this kind of improvement in a CRPS patient. He suggested that he would not have seen this kind of improvement with Ketamine infusions. He asked me about my equipment and treatment protocols because he would like to purchase a unit to treat migraines.

Just didn't have it in me to use my appointment to educate him on tDCS since I had other issues to discuss. I am so done with using my appointment times and co-pays to educate treatment members on the various treatment and meds that have helped me. I referred him to one of the tDCS treatment centers that offers training to physicians.

There truly is not much out there that can fix dystonia. tDCS addresses the root cause of neuropathic pain. It has interrupted the progression of the disease for me and greatly improved the quality of my life. This past summer I was feeling pretty desperate, not knowing how much more I could take. Given my remarkable response to tDCS, I believe that remission may be possible for me over time.

I truly hope others who feel similarly desperate will consider this treatment, particularly if the sense of desperation is causing consideration of risky and invasive procedures such as Spinal Cord Stimulators.

I hope this information offers hope to all!

Ballerina:

Great for you.

I love your attitude & I love this quote of yours:

Me too!! I spend half my time at a doctors appointment educating the doctor -- and then, of course, they charge for an extra long appointment time!!

I have been doing my research -- I have a physical therapist who is quite interested in these techniques (he is a big proponent of mirror therapy, etc) -- but I would like to use him for what he can do for me that I cannot do myself. So I am out there trying to research and figure out which device to buy, what electrodes, etc.

I have looked at the numerous of the recent publications on tDCS and high density tDCS devices that are under development. I noticed that at Spaulding rehabilitation Hospital (Beth Israel?) They are testing a high density tCDS device on mechanical allodynia and hyperalgesia -- which is which are some of my most debilitating symptoms. I would love to get some information on that experiment. information on the exact placement of electrodes for allodynia and hyperalgesia would be very useful.

I am also intrigued by vagal nerve stimulation. In the spirit of do what you can for yourself, I did run across a paper in a yoga journal where some dudes measured brain activity in a fMRI while people chanted “Ommmm”. Kind of makes sense – your vibrating your vagal nerve mechanically – like a Vegas nerve stimulator that is implanted, etc.

here is the reference (since I do not have enough posts on this forum -I cannot post Web references -- and apparently I cannot personal message people either):

title: Neurohemodynamic correlates of ‘OM’ chanting: A pilot functional magnetic resonance imaging study



I found this wonderful forum while researching tDCS…. you folks sure know a lot!!

voner

Hi Vioner,

Welcome!

Hope these suggestion help you on your journey.

1) To cut down on the frustration of physician education on your own dime and time try the following. When I needed a referral for my first tDCS treatment at Beth Israel I prepared a binder of pertinent tDCS
research material for both my neuro and pm docs. One binder was geared toward neurology and the other toward PM, with notes attached to please review prior to my next appointment. Prior to my appointments I called the office to inquire if the materials had been reviewed and if not I would need to reschedule my appointment. One doc had not so I rescheduled and no they could not charge me a less than 24 hour fee because I was prepared for the appt. and he wasn't. (Happily this doesn't happen any more)

Both docs reviewed the materials and although their levels of knowledge were at a basic level I got what I wanted-referrals.

2) Regarding the research you mentioned at Spaulding-I am assuming that the research is not readily available. I suggest contacting the lead researcher to express your interest in the research and request either a copy of the research or a summary of findings which they may release prior to publication.

Additionally, you may use any friends or associates connected with higher education or a medical school to get published research articles for you.

3) It may be useful to consult with a doc familiar with tDCS and its application for your particular diagnosis. I would in general be wary of PM docs unless they list tDCS on their websites. Most pm docs butter their bread with costly procedures. The more costly the procedure (thus the more lucrative) the less likely they will be to consider offering a low cost, extremely effective and non invasive treatment with no side effects. Please do not underestimate the big business of costly, risky and invasive procedures many with short lasting, damaging or no results, and the threat that tDCS poses to the ever growing medical procedures/pain management industry.

Best to you!!!!

ballerina:

Thanks for the information.

i'll keep digging.

I am a little surprised it should have so much luck with getting medical doctors to take a look at research you have prepared.

I do this -- but I have only had one medical Dr. should take a look at research before the appointment.......... I guess maybe I should try being a little more assertive.

Partnership with Doc is essential
 

Voner,

The first part of the equation is to select docs who are interested in developing partnership with patients. If you don't have that kind of relationship with your doc, or feel that you cannot, for whatever reason develop that kind of relationship, you will probably not be successful in getting him/her to review research.

This is a very slippery slope when it comes to treating a disease such as CRPS. It could also mean that you have a hammer and nail kind of doc. He/she is the hammer and you are the nail. He/she has a particular vent on your treatment, whether it be motivated by money (i.e. expensive procedures like spinal coed stimulators that come with a long, revenue producing feeding chain i.e. sales reps), or a lack of interest in learning anything new or state of the art, or an uneasiness with partnership relationships in relation to his/her patients.

Hope this helps!

This is so true. Until I started working with my current doctor I had never experienced this sort of doctor/patient relationship where it really felt like a partnership. I was lucky that I also had this sort of relationship with my physical therapist. To have those 2 key people on board and interested in learning about RSD and trying different treatments has made such a difference in my life. It has also helped me really feel like I have some control now over this RSD monster and am not just at its mercy and at the mercy of the doctors. Having that partnership with my treating doctor is truly priceless.

tDCS progress
 

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!

Thanks for the update. As you've said before...the tDCS doesn't seem like it offers a "cure" for CRPS but has the potential for helping to control some of the most debilitating symptoms. I am so inspired by your journey and the success you have had. Occassional setbacks just serve as a reminder of why we fight so hard to beat this thing. I pray that through the use of tDCS as a treatment that people with CRPS find a tool that helps lead them to remission or at the very least to a quality of life they haven't been able to have before. Please keep us updated and good luck!