[BigBug]

Hey to All! I am new to this site but have loved reading all of the stories for some time. My wife is a long term (greater than 10years) sufferer of RSD. Began as facial though is now spreading. We have tried most modalities of treatment and none have workled - except short lived good results from Ketamine infusions.

My question to you all: Have you, or anyone you know of, experienced tDCS and had side effects of flashes of light followed by a painful shock?

We are attempting tDCS and I am wondering if the placement of the anodal electrode may be involving the occipital nerve instead of just the motor cortex. Any help would be greatly appreciated!

[loretta]

Hi Big Bug and Mrs. Big Bug,
So sorry you have RSD, that's a long time. Welcome to this forum. You will find so many caring fellow suffers of RSD. We all have lots of questions and get so many answers and different experiences. I've learned so much. Coping skills is a big part of living with this.
I'm not personally aware of tDCS. What is it? How does it help? Thank you and I hope someone is aware of it and can answer for us. Take care, Loretta

[mollymcn]

My question to you all: Have you, or anyone you know of, experienced tDCS and had side effects of flashes of light followed by a painful shock?

Yes, my friend who participated in this at Beth Israel experienced these side effects... actually, they occured immediately after the treatment, before she went back in for the poking part of the trial.

[mollymcn]

Question for you -- where did you get the ketamine infusions done? That is the next treatment on our list. My friend S had to drop out of the other trial because it was too painful and the pain relief only lasted a few hours each day

[debbiehub]

I had the treatment at Beth Israel Hospital. I did not experiene any side effects. Just tingling on the scalp that first creeped me out but then went away. I had no results from this treatment. Feel free to email me at spudsailor@aol.com if you would like more info

Debbie

[mollymcn]

I'm so sorry you didn't get any relief at all! Such a shame after you went through something so scary. RSD stinks.

[BigBug]

My wife had them done two places: the first was Beth Israel Deaconess in Boston by Dr. Zahid Bajwa. Great guy and staff - she was treated very well. There they only do the low dose version - about a max of 40mg/hr. My wife was allowed to do the in-patient version which is five days straight of infusions in the hospital. She had good results - took about two days to get pain relief - but it didn't last much past a couple of days post-hospital visit.

The second place we tried was at the RSD/CRPS Rsearch Institute and Treatment Center in Tampa run my Dr. Anthony Kirkpatrick. Dr. Kirkpatrick is the U.S. coordinator of the Monterey, Mexico Ketamine coma study. In his protocol, he conducts a series of three outpatient 4-hr infusions over a three day period. He does a much higher dose, raised upward each day as tolerated, to a max dosage of 135mg/hr. (The coma version has doses of 250-600 mg/hr to give a reference) In this procedure, the patient is maintained in a state of conscious sedation which the FDA requires in the U.S. My wife got much better results from this though again, after about two weeks this time, the pain started coming back and she was back to square one about a month later. Sounds great though, a month of pain relief, but Dr. Kirkpatrick does not accept insurance and each infusion is $2,500 with 80% required up front. Thus, it is extremely difficult to continue to pay for. Ultimately (which is also Dr. Kirkpatrick's goal) local providers will use this same protocol (which is available from him) and bill it through your insurance.

However, a new question thus arises: Has anyone who received Ketamine infusions then experienced MORE spread of the RSD/CRPS symptoms? Prior to th Ketamine, the RSD for my wife did not spread from the facial area, though following this treatment, it has spread far and wide (an she suffered from the original site symptoms for more than 10 years.)

To also follow-up on my own questions:

In speaking with some of the researchers it appears that the shocks may have to do with sharp changes in the current provided to the brain - either in ramping the current up or down too quickly or in poor contact and conductivity between the electrode and scalp. The second situation seems likely in our case - where the saline used to wet the gauze covered electrode may have dried out too much. We will be trying again with conducting gel as well as electrodes with sponge inserts - much like they are using at Beth Israel.

For those interested, I will post later the details of the procedure as well as the publications which can be found regarding its efficacy.

[BigBug]

FYI-

I just did another stim on my wife this morning (Thanksgiving Day) using the new items I had obtained after having the issues from before of painful shocks. I used a new type of electrode which actually had its own sponge inserts, along with a electrode conducting gel. While a little messier, no problems with the conductivity and no side effects! So, for what it is worth, I will be trying this same protocol for the next four day to see how it does. Again, I will update on how my wife reacts and also update on the procedure and techniques soon.

[BigBug]

To update you on day 2 of the new tDCS protocol I am using:

Went fine again - used the same new sponge electrodes I got with the conducting gel - no side effects and no problems My wife was tired afterwards - a side effect of the treatments I have read about. Did indicate that the pain has changed some in nature - some reduced swelling and a change in the nature of the pain similar to what she felt while doing the Ketamine infusions. We will see how the next few days go. Hopefully, smooth with some improvements in pain. Will keep you all posted and will start a new thread on the protocol and research in the area.

[FXneuro]

Originally Posted by BigBug

Hey to All! I am new to this site but have loved reading all of the stories for some time. My wife is a long term (greater than 10years) sufferer of RSD. Began as facial though is now spreading. We have tried most modalities of treatment and none have workled - except short lived good results from Ketamine infusions.

My question to you all: Have you, or anyone you know of, experienced tDCS and had side effects of flashes of light followed by a painful shock?

We are attempting tDCS and I am wondering if the placement of the anodal electrode may be involving the occipital nerve instead of just the motor cortex. Any help would be greatly appreciated!

Sorry about RSD and the scare of the shock. I have worked with tDCS and occasionally have patients experience both the light and the shock. Fortunately, you're dealing with very low current, but it can give a tiny voltage spike that doesn't seem tiny. Causes come from contact glitches, batteries that are nearing the voltage shut off levels (even if they are "new") and unfortunately the quirks of the particular machine.
Just reviewing, the cathode has been used to reduce pain or overactivity whereas the anode is used to enhance neuronal activity. Bilateral scalp placements can get confusing and to simplify things, you can place the other electrode over the trapezius on the opposite side unless the RSD doesn't allow you to.
Make sure your pads are fairly large and close to the same size. Extra salt helps conduction as does a little pressure on the electrodes.
Hang in there