Thank you so much. I appreciate all you have suggested. Please don't think I'm looking for short cuts when you guys have done all the work. I want to do the work you've done and Voner, Catra and Ballerina and of course James. I just reached a wall when all I kept coming to were the abstracts and no I do not have access to any facility. I was asking if I could be pointed to the right place so that I could go deeper into learning about the protocols. I understand there are many different ones, but until I see one I won't even know what i'm looking at. I'm excited about making the trip to Atlanta and Doc Fugedy. I think I wanted my knowledge to be greater before the trip. I'll keep hunting, not ready to abandon ship yet. Thanks so much for all your input. Hope is well in your family by now. It would be nice if we all went to Fugedy together.

Hi again Hampster.

If you have not already been exposed to this interview you might try
goolging ( ORLIVE. Inc: Defining and treating chornic pain.)

It is an interview with Richard Cruciani who was one of the docs involved
in the Beth Isreal study on CRPS. The study itself was on CRPS of both
the upper limb and lower limb. The fellow patient in the interview is detective Tobin I think his name is, He developed CRPS as a result of
a knee surgery. Doc Crunicani was his PM doc. Detective Tobin was taking
35 different pills.. Detective Tobin is also featurned on Doc Fugedy's site
While limited in this interview with Richard Cruciani there are in the interviews
some pictures of the TDCS treatment being applied. ( Note how the doc
is meausring his head.) I read an udpate on Detective Tobin not long ago
he continues to have treatments since he lives in the area, only every few
months. He says the longest he has gone without pain is five months, but
then has to go in for a TDCS treatment.

Hang in there

:hug:Joydee

protocols
 

Find best protocol is hard becaouse all is wrong ,they to oversimplified the effect of tDCS.The currenttDCS rpotocols dindnt consider many importatant thigs.Yes they may work but noone know how,why.Same prtociol in another person with same problems may end up absolutly different.With standart tDCS pads you modulate almoust half of the brain.

Absolutly ideal be HD-tDCS guided by fMRI model , i triing to find ways ho to imrpove protocol without fMRI effect can me much more precize and stronger but stil far awy from fMRI based. Still be needed so try and error based aproachs.

*edit*

Hope this helps Hampster
 

Hey Hampster,

Great news about your upcoming appointment for tDCS consultation. Here is the post by Ballerina that I followed when doing my own research. Like I said, it is a time consuming process and is not for everyone. It is a good skill to acquire though because it can aide in investigating other treatments too.

I have found no evidence that tDCS is a cure but I wonder if remission is possible with continued use. I only continue to make progress. A friend of mine recently pointed out that I am not yet back to where I was when I had the spinal cord stimultor implanted, which made so much worse that I received SSDI on the first try. I am just so happy that I am now out of the wheelchair, off the walker and now on a cane all of the time. I absolutely know that I will get off the cane.

I was working when I had the SCS implanted. My goal now is to return to work. I hope for similar results for you and your friend!!!!!!!!!

Hi,

Yes, unfortunately not all folks with CRPS are responders to TDCS. Nevertheless keep in mind when it comes to these kinds of treatments
while reseachers have been studying them over the past ten years it is
only in recent years they are emerging through the pipeline. I recall a post
from Ballerina when after she went to Beth Isreal and was a responder
asked how many years it would be mainstream treatment and was told
five to ten years. Ballerina's response to that was that was not good
enough for her and she took matters into her own hands, much to the rest
of us good fortune.

The point I make is none us can wait and we all need to move this process
along through a grass roots level. It is more important than ever due to
the new imaging techniques we become our own advocates and advocate
for each other. Strides will be made but together we can make them happen much faster. I would have to search for a comment made in a post
by voner but I recall she said he heard some manufactor was working on
a new model for a unit. Perhaps Voner can elborate on that. What I got
out of her post was someone was working on a unit that had greater capacity
so perhaps we can also look forward to future units being ever more effective
than ones now existing. Its going to be tough for Pm docs to get with the
program simply because there is not a lot of money involved for the PM docs .
Not all PM docs are moved by money. I think doc Fugedy is moved more
by ciompassion so we need more docs like him but they exist out there.

Faith is the bridge to success, keep up research and faith.

:hug:Joydee

Hi Hampster,

If you find an abstract that looks especially promising write to the author and request a copy. Most will be happy that you are interested in their work. It is not hard to develop a resource at a university. Develop a list of articles you want, then develop a list of your friends who have kids enrolled in a University. I also enrolled to take a course on an audit basis at a large university and had plenty of access. If you have a doctor who also teaches at a university there is another resource.

I have found that persistence is the key to dealing with chronic pain. There is always a way to get information. You just have to find a way to knock the information barrier down.

A Little Overwhelmed
 

I have not posted in a while because I have been overwhelmed by requests for tDCS information. I initially gave my phone number out to some who needed more in depth discussion, and now many interested people have called me, unfortunately sometimes a dozen or more calls a day. I have had to turn my answering machine off so I can get some rest since I get calls as early as 7:00 am and as late as 10:00 pm.

I have been so inspired by everyone with whom I have spoken. Last week I met a most inspiring person. Although I did not recognize her since she posts on another section of NT I felt like she was my sister after I hung up.

She has a Spinal Cord Stimulator but wants to come off narcotics, and she wants better relief. I was immediately taken back to my days of narcotics and my constant fear that they could be withdrawn, and I might have to start the search for a new doctor to prescribe them. My new CRPS sister lives in a state that makes it especially hard to risk rocking any boats with doctors for fear of being dumped and not being able to find another doctor, thus being without narcotics which provide her needed relief to function. (Clarification-we are not talking addiction here, just day to day function. We are also not talking a newbie but a seasoned CRPS veteran, and a very sharp cookie.)

What is so remarkable about her journey is that she is taking it upon herself to try tDCS and had already identified three different paths to tDCS treatment before she even called me. Remarkable! I have dumped so many doctors due to ignorance, greed or just due to impeding my progress, that I have lost count. I can not imagine being locked into one doctor and being fearful of being dumped if a new procedure, not offered by that doctor is undertaken. This is nothing short of intellectual, medical and emotional imprisonment.

The worst part of this is that she is a real leader in the CRPS community, and even expressed fear of sharing her upcoming tDCS trial openly with other CRPS patients. She acknowledged greed as a major deterrent of tDCS being readily available from pain management doctors.

Three cheers for you!!!!!!!!! How remarkable that you did not let your doctor's ignorance stand in the way of advocating for yourself.

You can't be out now but I am praying that tDCS ends your need for narcotics as it has for so many others and that you can one day be out of the closet and share your journey with others who may be struggling with the same issues.

I think about you often and now you are on my list of most admired people. Thanks for blazing the trail for others behind you!!!!!

Dear Ballerina
i am SO happy that you have found this new treatment and that it is working for you! It lifts my spirits to see others making progress.
please stay in touch
Your friend always
Lori

I'm so glad to hear that so many people are trying to learn more about tDCS...but sorry that it is taking up so much of your time. You really have inspired a lot of people and I hope that they all get the relief from tDCS that you have.

An update for myself...I have finally been getting some decent sleep. I stopped taking the amitriptyline a while back and at first my sleep was still pretty broken but was better than it was before I started taking the amitriptyline last year. Now I am getting 5-6 hours a night of sleep instead of 3-4 and those are USUALLY consecutive. Sometimes I still wake up in the middle of the night but I can usually fall back asleep without too much time staring at the ceilling.

I haven't noticed much of an improvement in the pain since my last post...but I have been adventurous and been wearing short sleeved shirts around the house. The weather got cooler here again so I haven't had the chance to try going outside without a jacket and gloves but I am hoping that once the temps get back into the 70s-80s that I will be able to go out without those things. I still have to wear a scarf almost all the time though because the sensitivity in my neck hasn't yet gone down. But that's one of the first places the RSD spread to last year after my block where as my hands and arms were the last...so I am still hoping that with time I will see improvement there as well.

Not really related to my tDCS treatment but a win for me on the RSD front anyway...I have finally succeeded in cutting pop out of my diet. It was my one big vice and obstacle in committing fully to the 4 F's diet that I have been on for a while now. Vitamin water, juice, and regular water...that's pretty much all I drink now and I'm okay with that. The vitamin water was the change that helped me overcome the pop and my caffeine addiction.

So things are actually going pretty well for me at the moment. Now if I could just get the whole work situation figured out and settled I would be batting 1000%.

Hope everyone else is doing well.

Wow Catra!!!!!

Better sleep and falling asleep when you wake up. So exciting!!!! Sleep was the first thing that improved for me. Short sleeve shirts?????? I am so happy for you!!!!

Everyone I have spoken with who responds to tDCS, without exception, has had improvement in the last areas of spread first. The toughest areas seem to be surgical sites. Interesting.

Has anyone seen any improvement in original surgical pain site or spreads to surgical sites like with Spinal Cord Stimulators?

Last night I woke up at 12:30 and never went back to sleep. Dead on my feet now but will use tooth picks to hold my eyelids open so I sleep tonight.

Since I got CRPS I am very sensitive to chocolate. Just before bed last night I had two huge brownies made with coffee added. Big, big mistake. The amazing thing is that I am not cranky. Since tDCS the crankies are a thing of the past.

I am so darn chirpy that I can't wait to get up each day, knowing that I won't face the incapacitating morning pain that made it so difficult to do my home PT program without tears.

I am still making gradual improvements. I am doing two forty minute sessions twice a day. I still don't have the booster thing nailed down yet. Anyone find any research regarding length of time between booster treatments?

Here's to short sleeve shirts for Catra!!

Better days are ahead for all of us!!