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.

Hi ballerina,
Thanks for the response. I had no idea TMS carries the risk of seizure. That is not something I need to add to my list of diagnoses. Yes, you are right, I would hate to shell out a bunch of money just to be a guinea pig (not that I haven't done it before, but I would like to avoid it again).
Thanks for all your help!

My wife had a LOT of TMS treatments, and I read up on everything in advance and spoke at length with pracitioners and a manufacturer rep. The risk of seizure is really quite small, at least for the primary targeted region for depressoin (left dorsalateral prefontal cortex).

I haven't followed the technology since late 2009, but they were developing a unit for deeper penetration, and the risk of seizure was much greater--which was hampering development. But...maybe the units are now available.

Again, I think the evidence for pain efficacy is stronger for tDCS than rTMS, and at a minute fraction of the cost.

Dear Bill -

Thank you for taking the time to write your most recent and considerably detailed post.

I have never had depression on the scale your wife has experienced. The closest I can come was my beloved and wonderful aunt by marriage, a classic late-Sixties earth-mother, who developed postpartum depression following the birth of her second child - frankly discussed her suicidal ideation with her husband - and was in extensive psychotherapy for a couple of years before rebounding to the point that she wanted another child. Tragically, the baby died in an accident a few weeks after her birth, one for which my aunt believed herself responsible, and unable to live with the contradictions, died a few days later. (Then too, there was my little sister's fiancé . . . ) So I appreciate the potential lethality of severe depression all too well. This has to have been an enormous burden on you, day-by-day over all the years.

I can address a few of the other points you make:
To be candid, it sounds as though your wife has experienced other (“comorbid”) psychiatric issues along with the depression, for which I assume she has received psychotherapy (your reference to a traumatic event in adolescence) and medical treatments as well: hopefully something beyond benzodiazepines, to which most people develop a tolerance over time.

Then too, i.v.’s pose a special problem for people with RSD/CRPS. In 2004, I was being worked up in Philadelphia for a ketamine coma treatment in Germany that never happened, due to my preexisting glaucoma and the role that ketamine plays in elevating intraocular pressures. (Years later I learned the a mannitol drip would have resolved this issue completely: I have no way of knowing if that information was known to the German physicians in the study at the time, but I understood that a Dx of glaucoma was a per se exclusion criteria of their study.) In any event, before anyone had brought my glaucoma to the attention of the physicians in Germany, the protocol first required that I have and fail a 5-day continuous lidocaine infusion. Dr. Schwartzman correctly predicted that it would have no effect on me, but we had to put on the dog and pony show. Except that the nurses were unable to insert the 20 gauge 3-lead lines into any of my veins. Dr. Schwartzman saw this and matter-of-factly noted that my vasoconstriction was so advanced, a “central line” would have to be (surgically) inserted into my chest. Trust me, PICC lines – which were just then becoming widely available - are a vast improvement.

Today, before I have any procedure done that requires the infusion of a significant amount of a liquid, e.g., a dye of some sort, in too short period of time to allow for the use of a 22 gauge i.v., I first schedule a visit to the hospital’s PICC clinic and return when I’m done to have it removed. As of a few years ago, of over 4,000 patients who had participated in a coronary CT angiogram study at Cedars-Sinai Medical Center in Los Angeles, I was the only one who couldn’t tolerate a 20 gauge i.v. The lines went into me with enough effort, but as soon as I raised my arms behind me (the preferred position for the scanner) two separate i.v.’s - one in either arm for the sake of redundancy - immediately kinked in 90 degree angles. The joys of RSD/CRPS . . .

Finally, your wife’s fear of the stigma of ECT among her family and friends reflects on a remarkable lack of sophistication in Southern California, specifically when it comes to the treatment of psychiatric conditions, and more broadly – beyond the Westside of LA, West Hollywood, etc. – there is a tremendous ethos of conformity, notwithstanding whatever “laid-back” view the rest of the world may have of us. I feel for both of you. Thank you for being so forthright in your reply. This is clearly not easy stuff.

I can only hope the tDCS becomes an easier sell.

Mike

I have recently joined the forum and hope to help others through my successes and failures with treatment for CRPS. I was diagnosed with CRPS in 2006 after run of the mill knee surgery, which began my CRPS trouble. After trying the usual treatments (blocks) and the more unusual treatments (HBOT) and the typical array of meds, my condition only worsened. My pain management doctor suggested a Boston Scientific Spinal Cord Stimulator. I was nervous but desperate for pain relief. I spent hours on the internet reading first hand descriptions of success stories. My trial was successful and although recovery from the actual implantation was grueling I was excited to get my life back. I had a good experience with the Boston Scientific rep, starting with my request to do my own programming, which hastened tweaking my stimulation. (I now know that self-programming has no relation to positive outcomes for SCS and CRPS patients. A patient receiving a spinal cord stimulator behind CRPS and self-programming is like a passenger being permitted to steer the Titanic behind the encounter with the iceberg.)

I was so sold on my experience that I became an outspoken advocate for SCS for other CRPS patients. Unfortunately, after about 20 months the stimulator just stopped working. A revision surgery caused a spread to my other leg and another revision resulted in a spread to my wrist shortly thereafter. When the doctor suggested implantation of another stimulator to address the wrist pain and try to get me out of the wheelchair that the failed SCS left me in I decided I’d had enough and it was time to do some real research.

I had the good fortune of being evaluated by a knowledgeable neurologist who I wish I had found prior to the SCS implantation. He explained what my own research had already uncovered.

Spinal Cord Stimulators (even the competitors of Boston Scientific like St. Jude) have long-term success with types of pain like Failed Back Syndrome. Relief for CRPS is at best limited to months or a few years. SCS for CRPS eventually increases and aggravates vasoconstriction and inflammation and further disrupts brain plasticity (the culprits of CRPS.) The eventual result of my spinal cord stimulator was rashes, sores, swelling and my alodynia was much worse than prior to implantation. Additionally, each revision surgery began a new area of CRPS pain as well as initiated the spread to my other leg and wrist. The neurologist explained this action to me in this way: The stimulator stimulated the pain fibers in my spinal canal, which spread the CRPS to other areas, like a freeway efficiently facilitates transporting vehicles to distant locations.

I told the neurologist that my pain management doctor said the spread had nothing to do with the SCS and that “CRPS spreads” and to prove his point he suggested I “ask the rep or call the company.” My neurologist found this laughable and stated, “Conversations like this demonstrate ignorance, greed or both.” Regarding the rep, I couldn’t have asked him questions if I wanted to because as soon as he found out I refused additional business for him he ignored me-yes totally acted like I was a stranger in the waiting room. When I approached him and asked to speak with him he claimed he was “busy” and would call me. Never happened.

My biggest regret is not that I failed to do my own research prior to implantation, or that I did not listen to my gut with the revisions, or even that I ignored the many warnings of other CRPS patients who had similar failures, or that I didn’t notice that the “success stories” were from people who had their stimulators for relatively short periods of time-months to a few years. My biggest regret is that I assertively encouraged other similarly desperate and naïve people with CRPS to have spinal cord stimulators implanted. Three of these people that I know of have had failures after initial good results, which, like me left them in much worse condition.

Since I can’t undo the damage I have caused others the only thing I can do is to share my experience and encourage others with CRPS to “just say no” to spinal cord stimulators, no matter how desperate you are for pain relief.

I was working when I was implanted. Now I am working my way out of a wheel chair and fighting spread, dystonia, skin infections, rashes, and alodynia that is far worse than prior to implantation.

My condition is now rapidly improving through the use of tDCS, which I learned about from this forum. How I wish I had tried this treatment prior to being debilitated by the spinal cord stimulator.

If you are considering a SCS the last place you should go to ask about risks is your pain management doctor (who stands to loose upwards of $40,000 if you decline, even more with revision surgeries), the company rep and testimonials of patients less than three years out from implantation.

I wonder where I would be today if the fork in the path had led me to tDCS rather than to a spinal cord stimulator?

It is better if I don’t really think about that too much but I hope others who still have a chance to protect themselves will.

Dear Ballerina
Thank you so much for your encouraging post. It might save my life.I have extremely bad tinnitus, very loud, high frequency, painful, 24/7, lucky to sleep three hours a night for the last year, not even sleeping tablets work anymore, so I'm off meds which were just poisoning me. I'm a complete wreck, feel I can hardly breathe, life seems unsurvivable, yet I have a lovely wife and six beautiful children who need me. For years I've had manageable tinnitus but a sound shock sent it screaming. After seeing your post which mentioned tinnitus, I noticed that there's been a ton of success with tDCS as a treatment,even potential cure, by somehow entraining / stabilizing over-active neurons.

I don't have much money and desperately need your help to find a machine with sponge electrodes. The only one on the market I could see at first was the Fisher-Wallace device which is supposed to be very good for increasing serotonin (precursor for GABA, an inhibitory neurotransmitter which might dampen down over-activity in the brain and reduce tinnitus). Then I saw your comment on it being a CES (cranial electrical stimulation) device, an Alternating-Current (AC) device. This was a disappointment as I was about to buy, eventhough I don't understand the relevance. Someone on another forum sums it up as follows:

CES and tDCS are similar, but different. CES uses an AC signal, tDCS
> uses a DC signal. This means that the two electrodes have polarity with
> tDCS but not with CES.
>
> With tDCS, (Transcranial direct current stimulation) the neurons in the area below the anode becomes more
> excitable, and the area under the cathode becomes more inhibited. This
> is great if you want to see what happens if region X of your brain is
> shut off, or if region Y works overtime.
>
> With CES, (cranial electrical stimulation) the polarity of the two electrodes switches around 0.5 to 30
> times a second. This results in neural activity occurring in bursts in
> sync to the oscillating current, with activity alternating between the
> two areas under the electrodes.


Anyway, still don't get it, I'm not very science-savvy, so I looked around for other tDCS devices. The only ones I came across (with sponge electrodes) were the SOTERIX DC STIMULATOR and the NEURO CONN DC STIMULATOR, but I don't think either are available to public. I might be wrong but I can hardly concentrate so you or another forum member might be able to clarify.
I then realised you named your device as TRIVARION ACTIVA DOSE. Could you explain what bits I need to get together and maybe best place to buy. The unit I saw online didn't seem to have the sponge electrodes but I'm probably not focused. Also, I don't understand why choose an Iontophoresis Machines (used for administering chemicals through the skin, they say) is it that they have dual uses, if so that's great. I also saw the HidrexGS400 which is suitable for home use. The other concern is power output (tDCS works very safely and effectively with low milliamps to the head) and adjustable frequency settings(HZ).

Can you help me get my ideas together somehow. Your post has given me a little bit of hope, thank you.

I followed all of ballerina's recommendations on where to get the different parts for tDCS treatment. I got the activa dose unit that she linked to...it was $225 I think. I also had to purchase TENS lead wires with pin connectors (the activa dose machine only comes with snap connection wires and those won't work for tDCS)...I bought these from amazon.com for $4.96 including shipping (actual price was only $0.01 plus $4.95 shipping). Then I bought the sponge electrodes seperately from the site she recommended along with addition sponge inserts. The only other thing I had to buy that she did not list (but someone else did) were two "pin to banana" connection adapters. These were just a couple of dollars. All together I paid only about $300. I did need a script from the doctor for the tdcs unit but all the other stuff I was able to order without any special script or anything from the doctor.

As to why the Iontophoresis unit...it is just what is used for tDCS treatments. I'm sure someone else can jump in with the technical details on WHY it works but I haven't heard of any other sort of unit being used for tDCS. I was a little confused by this at first myself because I thought it would just be called a tDCS unit or something...but it's probably not a common enough use of the device for there to be a change in the name or anything.

So kind of you to come back quickly Catra

I'll search her posts for the links. It's all so new to me and a bit overwhelming but I have to try something,the tinnitus is relentlessly punishing. If anyone can fill us in on the techie side, how these device specs compare with units used in mainstream tDCS clinical trials, it would be wonderful to know. Thanks again.


"Bifrontal transcranial direct current stimulation (tDCS), with the anodal electrode overlying the right and the cathodal electrode overlying the left dorsolateral prefrontal cortex, has been shown to suppress tinnitus significantly in 30% of patients"
Brai2n, TRI and Department of NeurosurgeryBelgium

I've got my shopping list now for parts, thanks. Just want to double-check , have you or anybody used this on your head? should be safe at such low current. Thanks to Ballerina for the guidelines, really helpful.