Tdcs=100% medication free for me
 

Update,

I have been officially medication free for three weeks. I had initially intended on adding back meds once I came off everything but decided to see if I could hack it med free.

I originally took 26 pills a day. Then I got down to 13 pills a day. With all of those meds gone I don't even have to take colace, which I just assumed I would live on along with the other meds, for the rest of my life. That was all pre-tDCS.

I am seriously considering adding back Low Dose Naltrexone after I do additional research.

My body feels so much better off drugs.

So now I am wondering if I will eventually be tDCS free.

Yes, I admit it, I am becoming very greedy!!!!!!!

Yes, I am also wondering if remission is possible!!!!!!!

I did not have one doctor who believed I would ever be off meds given the severity of my condition, so who knows what the future holds.

All I know is I am keeping out of ER's due to flares, which is huge because, although I was initially diagnosed by an ER doctor, I generally detest the way I am treated when I go due to a severe pain flare.

Now I am watching the calendar to see how many flares I get. I put a red x on those days and keep the x going for how ever many days the flare lasts.

NO X Marks for the month of April so far! Of course I am very careful about triggers but this time last year I had severe flares no matter what I did or did not due.

WHAT I WOULD LIKE TO SEE IF FOR THOSE NEWLY DIAGNOSED TO TRY tDCS TO STOP CRPS IN ITS TRACKS. IF I GET THIS KIND OF RESULTS FROM "OLD AND COLD" CRPS, WHAT WOULD A PERSON WITH A FRESH CASE EXPERIENCE???????????

If you are in the desperation mode, wether due to initial diagnosis or advanced CRPS. please consider tDCS prior to treatments that carry risk and side effects, with little hope of lasting relief.

There is no question in either my mind or the team of doctors treating me that at a minimum the progression of the CRPS has been arrested.

I wish what I have for everyone else!!!!!!!!!

Hi,

This is wonderful news. I am so happy for you. This is the goal I hope
for my daughter when she is able to try TDCS. I hope my question is not
to personal and I will understand if you do not feel comfortable to resond
but when you say you are off all meds does this mean the pain has been
reduced to a point where you do not feel the need for meds or does this
mean the pain is gone completely.

Of particular note I spoke with Doc Fugedy on Friday. I am also waiting
on family members to return from out of state. when they do I hope to
present a solution to the obtacles we are working through before TDCS
can be tried and will update on the site our progress.

:hug:Joydee

Not at all too personal Joydee.

I am indeed on no meds period. I still have pain and alodynia. What I don't have is the many additional components of CRPS that I had prior to tDCS: Tinnitus, on fire burning, spasms, extreme sensitivity to light, sound, vibration, inability to wear any clothing on my upper body for any length of time, severe gastro intestional problems, shooting pain, stabbing pain, dystonia, atrophy, tremors and I could go on and on.

Woud I sleep better with meds? Yes. The problem is that the only med that helps me sleep also causes tooth decay, which I cannot risk since a root canal ignited a spread to my jaw.

The most amazing thing is that I was able to reverse a serious spread with aggressive swelling, color change, burning, spasms and nail changes. Of all the doctors I have seen I have been told that nothing stops a spread, if indeed it is a spread and not just a flare. Two Doctor's diagnosed me with a spread and with a short period of time it was totally gone and has not returned. My leg feels totally normal.

Would I have less pain if I took meds? Yes. Narcotics really got the pain but they also had miserable side effects, not to mention the scientific fact that narcotics only increase neuropathic pain long term.

There are three things I have focused on since very soon after diagnosis. 1) Long term solutions as well as long term side effects. 2) treatments that do not just cover up or mask the pain. I have really not focused treating pain, rather I have focused on treatments that deal with brain reorganization-the root cause of the pain. 3) Since I got CRPS from trauma, and surgery spread it, I refused anything invasive.

This approach led me to tDCS. I continue to make progress, which absolutely amazes me.

Do I believe I will be cured? No

Do I believe I will see remission? I used to say "I hope for remission" or "I pray for remission." Now I believe remission is very possibly within my reach.

I used to fear the constant cycle of becoming worse. Now I no longer fear becoming worse. I do not believe that the CRPS is progressing, nor do I believe it has been frozen in time, like sleeping beauty, waiting to be awakened. (Although I know it could if I injured myself or had surgery) I believe it is retreating.

What I have learned about CRPS is that it is looking for reasons to spread and looking for reasons to retreat.

The problem is that most treatments do not focus on retarding CRPS but covering up pain while the CRPS marches along.

I hope this answers your question Joydee.

I so hope that your daughter has the kind of response to tDCS that I have had!!!!!!

Can't wait for tDCS
 

Deb and I are seeing Fugady this w/e and we are so excited to be among all the people hoping for some kind of improvement in our struggles with crps. I believe Deb and I have some big expectations for this treatment. We've already gone the Dr. Rhodes STS route in Texas so we know what it's like to place high hopes on any treatment only to be disappointed. We hope to bring back to our support group exciting news and to all of you. Ballarina I hope your friend finds some improvement in the trial she's joining. It's great to know others are doing all they can to bring add'l info to this disease. Hopefully she'll share her experience with us all. Catra, I don't think I've read where your rsd is. I have upper body with major skin sensitivity. So I was happy to read you are able to wear short sleeves. Is this due to tDCS? Joydee, sure hope you'll get to Doc Fugedy soon, we'll bring you all we can rom our trip. Talk soon. Have a great day.

My initial site of RSD was my left ankle but after a lumbar sympathetic block in January 2011, RSD spread to my entire upper body between my waist and my neck including both arms and hands. Since treating with tDCS, I have experienced a significant reduction in the sensitivity in my hands first and now my arms as well. My hands and my arms were the last areas that the RSD spread to so I can only hope that it is a sign that I will eventually have reduced sensitivity everywhere. The pain is still there and I still get the occassional flare (usually triggered by cold or air movements) but it is a lot less than before. I had to wear gloves and always long sleeves to protect my hands and arms (I wear a scarf around my neck to protect that as well because it is VERY sensitive to air movements of any kind and cool temps)...but now if the weather is a decent temperature and it's not too windy I can get away with no gloves. Same goes for around the house now...I almost never wear gloves anymore in the house except to get stuff out of the fridge/freezer or if I am answering the door or something.

Anyway...I am very very happy for you and Debbie and I will be praying for your success. Nothing would make me happier than to hear that you are both responders to the treatment and that you find relief in this.

I saw my doctor yesterday and she was very happy with the success of the tDCS treatments so far. Both she and her nurse were very impressed with how well I am doing, how good I look, etc compared to how I was when I first saw them a year ago. It has been a long journey but I'm getting there. What is great about my doctor is that she is very openminded and I know that with my success with tDCS that she will now consider recommending it to other patients with chronic pain. Like me, she is optimistic that with time I will continue to see a reduction in RSD related symptoms and pain. It will take time and I am sure there will be some bumps in the road...especially once I return to work (which it appears MIGHT be happening soon)...but I have never been as optimistic about the chances of remission than I am right now with the successes of tDCS. But even if things never get any better than they are right now in this moment, I will still be very grateful to tDCS and ballerina for introducing it to me and for giving me hope that things CAN get better.

Catra,

I am so happy for you! This is such wonderful news. Isn't it great when the doctor and office staff get wowed by our progress?

I too am hoping for an eventual return to work. My progress is still unbelievable to me. Although I am not yet to the baseline of where I was prior to the implantation of the Boston Scientific Spinal Cord Stimulator I am close. This is truly remarkable because given the incapacitating spreads caused by the stimulator, I am now wheelchair and walker free. Now I am working on getting off of the cane.

tDCS has given me a chance for not only recovery from the common failure and side effects associated with CRPS and Spinal Cord Stimulators, but I believe it is my only chance for remission.

If we can have this kind of response to tDCS I can only imagine what effects the newly diagnosed would have

Please share the detail of your plans to return to work when you can!

Hi Hampster and Deb,

I have received many inquiries regarding selecting a tDCS doctor. Several inquiries have specifically asked about my knowledge of Dr. Harry Schneider. Sorry it has taken me so long to respond to your requests. I was not ignoring your pm’s. Please forgive me-I have been a bit on overload with tDCS questions.

For what it’s worth, this is how I determine if I will schedule an appointment with a tDCS doctor, (or any doctor for that matter)

I begin with a review of the material offered by the doctor on his or her website.

Regarding Dr. Harry Schneider I immediately saw many red flags prompted by information listed or omitted from his website.

The first was his assertion that iontophoresis “delivers a very weak current to the brain.” That is incorrect. The design of iontophoresis is transdermal drug delivery. In order for an iontophoresis unit to be used for tDCS it must be modified. tDCS does not involve the use of Iontphoresis. ( delivery of medication to the brain or muscles.)

The next red flag was that Dr. Harry Schneider is not board certified in pain management. In fact, from his website we really don’t know what his credentials are , although some are buried under the “Autism” section.

It gets even more interesting. Dr. Schneider claims to have “advanced degrees in language and linguistics.” What are those degrees and from what institutions?

What do degrees in linguistics have to do with pain management and more specifically with the treatment of pain with tDCS?

Dr. Schneider refers to himself as a “medical specialist.” In what?

Dr. Schneider’s website has listed for some time that he is “about to publish” research on language and the brain. Why hasn’t he published it?

Probably the most disturbing thing is the Doctorate in ”Speech Language Pathology” that Dr. Schneider claims to have. He notes that he hasn’t had time to complete the dissertation and will “when he is able.” A quick on line check of the requirements of the Doctor of Speech-Language Pathology at Southeastern Nova University includes, among other requirements, “successful completion of an applied dissertation.” Dr. Schneider is claiming to have an advanced degree that he has not earned.

Dr. Schneider makes a fleeting reference to tDCS at the end of the Autism section of his website, claiming results based on his own “research.” In addition to the results of his proposed treatment for autism sounding too good to be true for me, as well as some of his treatments being readily available in self help literature on Autism, I wonder what the costs of these treatment are?

Most notably Dr. Schneider does not publish his “research” regarding the success of tDCS and Autism on his website. What type of research, what is his methodology, how many subjects, over what period of time? What exclusion criteria are used, to recruit subjects, such as subjects IQ? What conclusions does Dr. Schneider draw from his data.?

The final red flag is Dr. Schneider’s description of himself as a “neuroscientist.” Seems like a stretch to me.

Dr, Schneider’s section regarding headaches makes no mention of tDCS, which is curious because one would expect a neuroscientist to have basic knowledge of the application of tDCS to headaches. The stroke Rehabilitation section mentions that stroke patients “have already experienced noticeable improvement” regarding lost speech and language due to “new methods and “new therapies” but Dr. Schneider declines to name those treatments and therapies.

The above is only my assessment of one section of Dr. Schneider’s website. I decided it was not worth my time to review the validity of his published material, which, based on one abstract was less than impressive to me.

Lastly, the following quote from the website left me wondering what Dr. Schneider’s shtick is. “Dr. Schneider feels that if a patient has a condition that is brain related, such as Parkinson’s or Multiple Sclerosis, then chances are he is involved in its management…”

Based on my opinion of the content of Dr. Schneider’s website I did not continue my usual process of researching patient reviews (which do not necessarily sway me one way or another) and a background check of possible sanctions, (which also may not sway me one way or the other.) The very last step in the process for me is to call the doctor.

More doctors fail my process than pass it.

Based on the material supplied by Dr, Schneider I would not consult with him regarding the application of tDCS to anything.

I cannot stress enough the effects of pain-induced desperation on our ability to make the best choices for treatments and physicians.

Getting ahead of the desperation and submitting all doctor’s and treatments to the utmost of critical review is really the only tool we CRPS patients have to protect ourselves from physicians and treatments that can make us worse, can waste our money or can scam us.

The same obsessive use of critical thinking and ruthless research can led us to better choices. In my journey with CRPS I have found that the enemy is not ignorant and or greedy doctors, or questionable, useless or risk laden treatments, or even pain itself.

The enemy is desperation.

I am so excited that you both will be trying tDCS. I wish you every success!!!!

Wow...just...wow. Thanks so much for sharing your detailed assessment and your process for evaluating which doctors to treat with. I know I learned quite a bit from that and only wish I had learned it prior to treating with my last PM doc whose name I got off a referral list from my previous PM doc who was retiring. Hindsight though...it's always 20/20.

Debbie and Hampster...I am thinking of you guys and hope you meeting with Fugedy this weekend goes well! Best of luck to you both!

Hi Catra,

I can't tell you how happy your report makes me along with hearing all this
good news others are going to see the good Doc Fugedy. We still have some
details to work out but think we will soon be re-setting the appointment with
Doc Fugedy for the consult etc.

:hug:Joydee