Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-15-2012, 08:48 PM #1
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Quote:
Originally Posted by VicF View Post
Ballerina,

Could you tell me what setting you use for the 'dosage' setting on the
phoresis uint? I imagine you set the current at 2mA?

Thanks and happy to hear you are doing better,
Vic
The dosage is 40...current is 2mA...treatment lasts 20 minutes.
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Old 03-16-2012, 07:06 AM #2
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Default tDCS-reversing the effects of the Spinal Cord Stimulator

Yesterday I went out the door with my cane for the first time. The first thing I did was to walk through the daffodils blooming by the driveway. Then I walked to the mailbox and back.

A mundane activity that most people take for granted. I have not had that much fun in years.

After having been maimed by a Boston Scientific Spinal Cord Stimulator tDCS has given me a new life. The wheelchair that the Spinal Cord Stimulator relegated me to is now in the shed. I hope the walker will also reside there soon.

It is not often that CRPS worsened by Spinal Cord stimulators responds to anything. I am in awe and feel so thankful for finding this treatment.

I am now in physical therapy only once a week, down from three times a week. The atrophy in my leg is just about gone. I am sleeping like a baby.

I am now on maintenance treatments of twice a week for twenty minutes each.

The best thing is that my energy level is back to the pre-CRPS, Pre spinal cord stimulator level. There is no doubt in my mind that tDCS has interrupted the progression of the disease.

If you are newly diagnosed please consider tDCS to knock out the CRPS. For all of those with CRPS who are considering Spinal Cord Stimulators please read my history first. I have been to hell and back. The only thing worse than CRPS is CRPS made worse by a failed Spinal Cord Stimulator.(And most of them do fail for CRPS patients, within several months to several years)

I try not to look back but some times I can't help but think about how my life would have been different if I had used tDCS early on, prior to the many treatment failures and medications that either did not work or made me worse.

Please consider tDCS. You have nothing to loose.
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Old 03-16-2012, 07:43 AM #3
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Congrats!! That is fantastic. I definitely know what you mean about how fun and exciting those "mundane" activities can be. After spending months and months in a wheelchair I remember being terribly excited when I was able to reach into one of the upper cabinets in the kitchen and get myself a plate that was not left on the counter for me. Such a little thing...but so huge to me at the time. Same goes for he first time I was able to get in the car and drive after almost a year of not being able to.

I am SO happy to hear how well you are doing. Keep it up and keep us posted.
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Old 03-01-2013, 06:34 PM #4
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Smile She was stumped?

Quote:
Originally Posted by ballerina View Post
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!
She should be paying you! The difference between TENs and direct current stim. is direct current. TENs is intermittent current. You could burn your skin with it and it is the continuous current for twenty minutes that stimulates the frontal lobe. My little machine ramps up then times your session. It turns off automatically after twenty minutes and aborts immediately if you are getting too much current (because of too much pressure on the electrode). I am still getting use to the device. TMS is $7,000; insurance does not pay for it, and you may have to repeat it. Only offered in a clinic. Plus, it is unpleasant (sounds like an MRI) and each session lasts an hour.
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Old 06-15-2013, 11:15 PM #5
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Default Unit from foc.us - any opinions?

I discovered this thread while looking for help with my chronic depression - I do not have RSD or CRPS.

However I am very interested in TDCS as a treatment for my depression.

I subscribed to the mailing list of a company called GoFlow who were working on a direct-to-consumer TDCS device, but in the last week or so received an email from them saying they were winding up - and referring interested parties to another company,*edit*

It's marketed as a video game performance enhancing device, but I am hoping that by using the optional extension kit, I can use it to direct current to the relevant parts of my brain.

It has received some criticism, but I'm still optimistic. Has anyone here come across it? I'd be interested to hear others' opinions, but in any case, if TDCS does help RSD then maybe this might be of interest to others to investigate ...

looks like it won't even START shipping until next month, so don't know when I'll get my unit. I intend to do some regular cognitive tests to make sure that at the least I am not harming any cognitive abilities I can readily test, although as I mentioned, I'm primarily interested in this device for its possible mood enhancing properties.

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Old 06-19-2013, 12:52 AM #6
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I have read that tdsc has been used to help drone pilots learn quicker so I would assume that it would help video gamers. Don't know about depression though.

On the depression topic though, my psych believes that Ketamine will be the next "big" treatment for depression.
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Old 04-17-2014, 09:54 PM #7
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Default Fresh in from Yahoo. Very similar to tcds

I haven't seen any postings lately about tcds so I don't know if this discussion is okay but I found this article on Yahoo today and it is very similar to tcds. Thought some of you who've tried it might be interested. http://news.yahoo.com/blogs/this-cou...8561.html?vp=1
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Old 01-05-2012, 01:26 AM #8
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Default 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. 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
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Old 01-05-2012, 05:15 PM #9
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Quote:
Originally Posted by margarsa View Post
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. 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.

Last edited by ballerina; 01-05-2012 at 07:27 PM.
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Old 01-05-2012, 05:52 PM #10
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Default 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!

Last edited by ballerina; 01-05-2012 at 10:27 PM.
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